7/20/2014 - Thanksto all who attended our big bash yesterday for Lauren's Sweet 16 and Christopher's Graduation! What an amazing outpouring of love and support for both of them. We feel so blessed to have so many wonderful friends and family. Hope you enjoyed the party and please share your pics with us. Much love from our family to yours. <3 <3 <3
Special Thanks to everyone who also bought a copy of "Turning Terrible into Terrific". It hit #1 on Amazon yesterday, so now Dennis is a number 1 best selling author
7/15/2014 - Only 4 days to Lauren's Sweet 16 and Chris' Grad party and we are in final preparation mode! We are also continuing our search for alternate treatment options for Lauren. The medical route does not seem to have any additional options at this time. We heard back from a foundation that does "genetic cancer marker" testing to see if there are any alternate drugs that is a match to treat her specific tumor cells and there were none. I also heard back from a doctor in Texas that was performing a Clinical trial on Glioblastoma's but he said they have no protocol for this extent of disease Good news though is we found someone close to home that offers a holistic treatment option that we are pursuing. She is going in for an evaluation today and we will move forward from there. Keep your thoughts and prayers going for Lauren to be H.P.H. (Healthy, Positive and Happy)
BTW - Remember to register on www.tttlaunch.com to receive reminders to order your copy of the book that was inspired by Lauren. Books need to be purchased on Saturday, July 19th between noon and 2pm. Goal is to make the book an Amazon #1 Best seller and raise money for the Make-A-Wish Foundation!
7/9/2014 - It's only 10 days until Lauren's and Chris' gala event! She is very excited and had her hair done last night. You can check out her fabulous cut and color on youtube with today's Live for Today tip: http://www.youtube.com/watch?v=hKYhQChjQu0.
July 19th is also the day of her dad's big book launch. If you haven't done it already, you should register at www.tttlaunch.com to get email reminders to purchase your copy of Turning Terrible into Terrific on Amazon.com starting at noon. By doing so, you will receive some special bonuses his friends are donating. All proceeds go to the Make-A-Wish foundation. The goal is to have about 500 people purchase the book within a couple of hours so it can be an Amazon #1 best seller. Thanks as always for you continued support.
We look forward to seeing everyone on July 19th in person or will know your well wishes will be with us in spirit!
6/21/2014 - Happy 1st day of Summer! Summer is Lauren's favorite season and it is finally here. She started her 1st cycle of chemo this past week and so far no side effects. Keep your love and prayers coming her way! We have 3 other important things to share:
1. Lauren's Sweet 16 and Chris' Graduation Party is being held at our house on July 19th at 4pm and evites were sent out. If we missed you and you would like to come, please contact Lisa at firstname.lastname@example.org just so we can keep track for food. All freinds and family are welcome. Please join us and help us celebrate their special day. Be sure to bring your bathing suit for the heated swimming pool and dunk tank! Lauren of course will be the beautiful princess in a hot pink dress and tiara.
2. Lauren's dad, Dennis, is re-launching a book he wrote that was inspired by Lauren called "Turning Terrible into Terrific". He is donating all money raised connected with the re-launch to our good friends at Make-A-Wish. Please help him make his book a #1 best seller by purchasing his book on Saturday, July 19 (day of her party) through www.amazon.com. To receive email reminders and get other free stuff from Dennis, you can register at www.tttlaunch.com. (That wll also help him know how close he is to his goal.) Thanks for your support!
3. If you are not aware, Lauren has been recording "Live for Today" tips and posting them on youtube. She calls herself "LC". They are being posted on her dad's youtube channel. You can look up Dennis Cummins and/or search for LC - Live for Today tip. My favorite one yet is the tip to remember to TRY NEW THINGS. You can also see them on her mom's facebook page is you are friends.
6/12/2014 - Positive news...we met with Lauren’s doctors yesterday at NYUH and they have some additional options for Lauren that we are going to move forward on. First, is the option to treat the tumor with an oral chemo that it will hopefully respond to. Our surgeon said if she responds well to the chemo, he would consider performing another surgery down the road to remove more tumor and again buy her more time. They also told us we can opt to send tumor tissue to a medical foundation for additional research to identify the tumor cells and then other durgs could be recommended, which could be tried 1 at a time to target a particular mutated cell, which of course we opted for.
We consider all of this news positive and allows us to have more encouragement that while her future is not certain, there are options to try and yet to be researched. Please continue to keep her in your prayers and send loving thoughts her way.
Below is a pic of before and after surgery. The right side is the before and the left is after. You can see on the right the dark circle is the cyst (fluid filled part) and the white mass below is the solid mass. The surgery allowed for the cyst portion to drain and a portion of the solid mass was removed for a total of about 60% reduction.
Here are other images comparing Dec 2013 (right) to March 2014 (middle) when tumor was stable and then image in May 2014 (left) showing significant increase (again white in center of brain is solid mass and egg shaped dark space is the cyst).
And here is our angel 4 days after surgery:
6/6/2014 - We got the update from Lauren doctor this week and the findings are that the large tumor is actively growing and their recommendation is to monitor only as any further treatment would only be detrimental to her health and not buy her any quality. Her doctor is meeting with the top specialist in the country on NF and brain tumors and we are hoping and praying for other options. Lauren is my miracle baby and if there is any way for her to pull through we will find it. I am also working with a wonderful network of friends who are healers and sending her their love and light. Today, Lauren is feeling good and not aware of her prognosis. We ask our friends and family to stand strong with us, pray for her and love her as we all always have!! She has started a new video series called Lauren's "Live For Today" tips. You can find them on youtube and my facebook.
5/30/2014 - Lauren was up more yesterday and did some walking as well. She startied to eat and drink more and was taken off her IV and able to be released this moring. We got home just before 1pm and she is sooooo glad to be home. We are still waiting for the result of the biopsy and hope to hear back by early next week. Tumor board meets on Wednesday and will discuss game plan from here.
5/28/2014 - Lauren is doing really well following her surgery. She is alert when she is up and has been eating and drinking in small amounts. She is sleeping most of the day but did have a PT session and was able to sit up for 5 or 10 minutes. Doc says if she continues to do this well she can be released as early as Friday. We will need to wait for results of biopsy to see what exactly we are dealing and will help determine what other follow-up is needed from here. Lauren was her amazing self telling everyone she is "HPH" which of course is Healthy, Positive and Happy!
5/27/2014 - Lauren had her surgery today which took about 5 hours and was successful! The doc feels he removed all of the fluid in the cyst and got a sizeable amount of the tumor, up to 50%. We will know for sure after a post-op MRI. She impressed the doctors by how well she roused later in the evening.
5/26/2014 - Lauren was experiencing some problems with balance last week and then started taking longer than usual naps into the weekend. We took her to ER at NYU yesterday and after taking an MRI it was discovered there was significant tumor progression. This was mostly due to a cyst but the solid mass of the tumor has also increased in size. This is the same tumor that was treated over 4 years ago and has been dormant until recent. In any event, she requires immediate surgery to alleviate the pressure in the brain and we will need to discuss follow-up steps with the team of specialists. Surgery is to take place tomorrow around mid-day. I will provide an update when she is out of surgery. Lauren has been through so much and has never been stronger! We have the very best surgeon and oncology team and have every confidence she will pull through this and get back to routine very soon. Doc expects to be able to release her in a weeks time. Until then, keep Lauren and our family in your thoughts and prayers. xxooxx
3/29/2014 - Long time, no update! Lots to share so here it goes. Lauren turned 16 this week on March 25 and it's been a busy week! She had dinner with friends and family at Bahama Breeze. The next night we took her to see Cinderella at the Broadway Theatre in Manhattan. Big shout out to "Garden of Dreams" for making that happen! We also got to stay at the Ronald McDonald House that night because Lauren had her last "hosptial" visit the next day. She has been part of a trial for a new oral chemo med and this was her last day of the 12 month treatment. We had fantastic news! Both the large tumor that she was hospitalized for over 4 years ago and the smaller one that started to raise concern have both reduced in size since last April. The big one is approximately 50% less in volume and the small one about 30% less in volume!! Our doc says there is a another new drug coming to market that is more precise with less side effects should there be any future concerns. Lauren received many well wishes, flowers and gifts this week -- so thank you to all! I promise I will continue to update this website but we are also going to start using facebook to post more pics and comments. We our throwing Lauren a Sweet 16 over the summer on July 19 and all are welcome! Her brother is also graduating high school and going away to college in August, so it will be a double celebration! Hope to see many of you there! We will set up an invite and RSVP online so we can be sure to accomodate everyone who wants to come.
8/6/2013 - Lauren is finishing up summer school and can't wait to be off for an entire month. This weekend she had the entire Mt. Sinai Varisty Cheerleading team over to help her make bracelets and chat. She had so much fun! They presented her with a team shirt and hair ribbons and made Lauren an honorary member of their team. They plan on visiting at least 1x a month and inviting her to their practices. Mt. Sinai Rocks! Thanks girls for "chillin like a villan"!! Below is a pic of the team with Lauren:
5/25/2013 - Happy Memorial Day Weekend to all! It's been quite some time since I have updated Lauren's blog and many have been long awaiting. So here it goes. Lauren is finishing up her first year at her new school. While she loves her new school, teachers, therapists and has made many new friends she misses all those from Miller Place. She still keeps in touch with many of her friends and enjoys the time she spends with them.
Since January, Lauren has experienced some setbacks and has recently begun a new trial medication. We know she will get through this next challenge and appreciate everyone's continued prayers and well wishes.
Lauren's brother Chris got his drivers license in March and has also begun his search for a college since he will be a senior next year. He has decided he would like to enter the medical field and do research in neurology. I'm sure he has been inspired by his sister's plight and know he will make amazing contributions.
Lauren's dad continues to make her laugh and is still enjoying his work as a motivational speaker while promoting his recently published book "Turning Terrible into Terrific". For more info, you can visit his website at www.denniscummins.com.
Lauren's mom (that's me) is responsible for updating this blog and I will try to be more timely with my next update. Until then, continue to count your blessings as we do here!
9/8/2012 - Lauren finished her first week at her new school, Boces at Samoset and really enjoyed it! She was excited to see some of the friends she made in summer school and also to meet her new teacher. She decided to get a short haircut for back to school and below is a pic of her and her brother Chris.
8/14/2012 - Lauren has been enjoying her summer. She went to a new summer school at Boces and will be continuing Boces in the fall at Samoset which is a school exclusively for children with special needs. She is thrilled to have a couple of weeks off before starting her new school in the fall. Lauren has dropped more than 10 lbs this summer too. She is on 2 new medications trying to align her hormones and thryoid levels -- and this is probably helping her balance her weight. I'm also happy to say it has been 1 year this month since she has had any surgeries -- so glad to announce that milestone! Her dad's new book comes out in the fall that was inspired by Lauren and it's called "Turning Terrible into Terrific". You can visit his website at denniscummins.com if you would like more information. One last shout out to Trish Daly who just opened a new store in Long Beach called "The Blue Bungalow". Trish if you remember coordinated Lauren's fundraiser and is a very dear friend. If you are ever in Long Beach you should check out her store that has beautiful "Beachy' gift items. There is talk of her carrying Lauren's special "Love, Energy, and Power" bracelets as well as some of her artwork featured as notecards and bookmarks. Lots of luck and love to Trish and owners of The Blue Bungalow!! <3 <3 <3
6/10/2012 - Lauren hit another milestone this past Friday, June 8. She atteded her "moving up" ceremony and received her diploma. In Miller Place, graduating 8th grade is a big deal because they "move up" to the high school and have a semi-formal dance. Lauren looked so beautiful in her dress with her hair and make-up done. She has been blessed to be able to go back to school this year and finish up middle school with all her friends. It's the first full year of school she has attended in many years. Over the years there have been many people who have touched Lauren's life and there has been a special group of girls that have been especially good friends to her. Lulu Judson, Morgan Rosman, Kelsie Hanaran, Kiersten, Rachel and Sammi Miller, Melanie Fales, Lily Molden, Jackie Whimple, Arianna, Jessica and Danielle Powers, Barbara O'Conner, Amanda Post, Laurel, Caroline, Olivia and Victoira Anderson, Mylissa Scully, Lauryn Magill, Marley Painter, Kristen Ellis, Leah Giakis, Alyssa McGuiness, Lauren Meola -- all these girls have been very special friends to Lauren. Friendship is something very special and all these girls truly know what it means to be a friend. Lauren will be attending a new school next year and will miss seeing her friends every day, but looks forward to making new friends and embarking on a new venture. Thanks to Lauren's friends and everyone in Miller Place for their amazing support!
5/6/2012 - Today marks 2 years since Lauren is home from the hospital!! What a journey it has been. Lauren wants everyone to know that she is healthy and happy. She is getting stronger every day and is still horse back riding and playing the piano and still giving away her bracelets filled with Love, Energy and Power. One day she hopes to go back to dance. Next month she graduates 8th grade and has her semi-formal dance. She is going to a new school next year and excited about that too. Medically she is doing well and has been downgraded to get MRI's every 6 months instead of every 3. Happy 2 years home girl -- We Love You!!
4/9/2012 - Much has happened since the last update a couple months ago. Lauren had a follow-up MRI in Feb and all is well. Doc said Lauren can now go 6 months between MRIs instead of 3. We are still working out her meds and considering a new med to help with her focus and fatigue. School has been a little overwhelming for her this year and we are considering all options for placement next year. Lauren turned 14 on March 25 and had a SPA party where she and 16 of her friends got to have facials, mani/pedis and massages. She got to march in an Easter parade yesterday and join in Easter Egg Hunts and had a great time! She has lots of activities planned while she is off on spring break this week and is so happy she gets to sleep in for 10 days! Her dad just finished writing a book that was inspired by Lauren called "Turning Terrible into Terrific". It will be out in a few months and you can visit denniscummins.com for more info on that. Lauren can't wait until the next time she can go back out on stage with her dad! Be well!
1/26/2012 - Hey all, here's a quick update on Lauren. She is hanging in there with her transition back to school, though she is still very unhappy with how early she must wake up each day -- 6:30am! We also got results early this month indicating her thyroid counts are low and she has started Synthroid. The medication is supposed to help increase her energy level and metabolism. The med should help her start to lose weight. We have signed her up for a pool membership and she has begun swimming on the weekend which she really is enjoying. She goes back for another routine MRI next month and more bloodwork to check all her counts. So look for another update next month!
1/1/2012 - Happy Happy New Year Everyone! Lauren spent a quiet evening at home with her family watching the Rockin New's Year Eve with Dick Clark and Ryan Seacrest. Her dad made a fantastic meal for the family -- including the best homemade mac and cheese! She beat her mom, dad and brother in Go Fish and bubblegum. She spent the early hours of the new year calling friends and family wishing them all a Happy New Year! She wrote out her intentions and goals for 2012 and hopes for continued good things in the new year. Wishing you all the best of everything the new year can bring!!
11/28/2011 - Today Lauren mailed over 100 holiday cards to the service men and women stationed overseas. The Red Cross came to my office during a meeting that was focused on leadership and innovation a couple of weeks ago and we did a charity / team building event that included making care packages for disaster victims and making holiday cards. It ocurred to me that we could turn all of the pictures Lauren has made into really nice cards for the soldiers who will be away from home for holidays. She wrote a poem for them and I included some info about Lauren with the intent to inspire them. I can't think of a better way this Thanksgiving to show appreciation for all that we have then to thank the men and women who show their bravery and courage each and every day! So if you know any of these men and women please let them know Lauren sends them her LOVE, ENERGY and POWER! If you want to send holiday cards, just go to www.redcross.org for more inf.
11/21/2011 - This past weekend, Lauren got to see her dad speaking in NJ doing what he loves to do -- inspring others to believe in themselves and be all they can be. Her brother Chris went along as well as 2 of Laruen's aides, Amanda and Brittney. Chris and Lauren both got on stage to help give away workshops and Lauren could not have been happier.
11/1/2011 - Lauren has a new baby cousin! Her Aunt Cathy and Uncle Bryan welcomed beautiful Brayden Daniel today at 8:37am. Lauren and I went to the hosptial to visit and Lauren was so thrilled that she got to hold Brayden. She didn't want to let go of him and was in awe of how small he was and how soft his skin and hair was. She can't wait to see and hold him again. Cathy is my youngest sister and it's her birthday Friday, 11/4, Happy Birthday Cathy and congratulations on your new bundle of joy!
10/31/2011 - Halloween is Lauren's favorite holiday! It's not the dressing up, though that is always fun, but it's the candy and the opportunity to meet many teenagers because she goes to Safe Halloween over at the hgih school. At Miller Place HS, kids get together and form group themes and can decorate a classroom in the theme as well. This year there were girls dressed up as beauty paegent contestants, wizard of oz, harry potter, witches and winnie the pooh so name a few. Lauren was a psychic this year complete with a crystal ball and ability to predict the future. She saw hugs in many of the candy-giver's futures! You don't have to be a pyschic to know that Lauren continues to make progress and enjoying being a kid again.
9/24/2011 - Lauren started school on September 7 with the rest of her 8th grade friends and was so happy to finally be back in school! She is thrilled to see all her old friends as well as make new ones. She is the hit of 1 of the lunch tables where 14 girls sit there to hang out with her. After being in school about 3 weeks now, her biggest complaint is that she has to wake up at 6:30am. Her brother Chris has to wake up at 5:30am for the HS so she has it easy. Yesterday was picture day and you can see a pic of her below.
8/11/2011 - The summer school session is over this week and Lauren is very excited to be done with that Not only does she get more time to spend with her friends but she also needs to get ready to go back to school! Yes, Lauren is going back to school as an 8th grader!! She'll be going for half days as she still needs to rest in the afternoon -- but is thrilled to be headed back to school with her friends and take the bus. She has made so much progress since she has come home from the hospital and we are so proud of her. It's hard to believe it's almost 2 years since her hospitalization. She is still using her wheelchair to get around but can now take steps on her own with a spotter. The hope is that she will build up enough strength to one day be able to walk with a cane. We continue to count our blessings!
7/16/2011 - Lauren took dance lessons starting at 3 years old right up until the year of surgery when she was 11. There were assistant dance teachers, other young girls who danced, who helped in other classes. There was 1 girl, Jess Saverese, who Lauren formed a speical connect ionn with. As Lauren loss more of her vision, the dancing got more difficult, but the owners, Miss Margie and Miss Summer, allowed Lauren to continue to dance and participate in the dance recital and Lauren so enjoyed it. The last 2 years were the most difficult for Lauren and Jess offered her time to teach Lauren private lessons so she could continue. Anyway, Jess is in college now and wrote a short essay on Lauren and I thought you would all enjoy reading it.
Essay by Jess Savarese about Lauren In life, examples of courage and kindness reveal themselves when we least expect it. I first met Laren Cummins as one of my dance students at Marchand’s School of Dance when she was just three years old. Marchand’s is a dance studio where I was taught that I am a dancer “living through the joy and magic of dance” and the studio fulfills that promise in each and every class and recital we give. Lauren was a student in my Saturday morning class. At three years old, she had the widest smile and joy in her heart that reminds dance teachers of why we love our jobs.
As a dance teacher, I am constantly encouraging children to do their best work in dance class. The moment they master their combination or perfect their technique, I reward them with praise and reinforce how excellent they’re doing. As a dancer myself, I know the feeling of frustration and the excitement that drives you to learn your steps and work to achieve the very best that you can be. At that time, I never thought that one student in particular could help me learn much more about life then dance and routines.
From an early age, Lauren started to develop problems in her left eye. Through countless tests, procedures and doctors’ visits, her parents learned that she had a cancerous tumor growing on her brain, impacting her ability to see, most specifically in her left eye. By the time she was four, Lauren had a porto-cath for chemotherapy connected to her in an effort to reduce the tumor now growing. Over the years, Lauren continued to fight the tumor and by the time she reached the age of seven her sight diminished to the equivalent of what we would see looking through a drinking straw. Amazingly, Lauren viewed these challenges as a mere speed bump or minor obstacle in her getting back to being well. As her dance teacher, I made the decision to get involved in her fight to succeed and overcome this tremendous life-threatening illness. Although exhausted from her medical treatments and medications, Lauren and I worked tirelessly after normal dance classes to help her learn her dance in less-than-conventional ways. Little did I know, that Lauren had already began teaching me to pay attention to finer details and how to overcome obstacles in my own life with what she and her family were living and enduring. Lauren’s eyesight diminished to the point that she was legally blind when I was in my freshman year of high school. Due to her heavy medication, Lauren could no longer participate in dance class. Private lessons for her with me were arranged. Lauren and I decided to focus on technique instead of learning complete dances. Each week, I put together a plan that would keep Lauren involved and stimulated, while trying to focus on making her happy and bringing her joy. The weekends before our classes I devised stretches and movements that she could do while attached to her porto-cath, which wouldn’t interfere with the braces on her legs, and words for myself to explain each movement. In March of my junior year, a huge fundraiser was held at a large nightclub to create awareness for Lauren and her family and her condition. Upon my arrival at the event, I was greeted by not only her parents, but by an overwhelming amount of aunts, uncles, cousins, and grandparents. After embracing me, each and every family member told me how much of a difference I had made in Lauren’s life and their depth of gratitude and love towards me poured out. Never did I think that at sixteen years old I would mean so much to a little girl and have such an impact on her and her family. After the event and back at the studio, while I taught Lauren to turn and plie, Lauren was teaching me how to give a compliment. I always wore rings and jewelry for her to touch, perfume for her strong sense of smell and kept her in close physical contact by my side. Over our years together, Lauren has taught me: -The power of a smile
-The warmth of a hug -The effect of kind words -The gratitude of a child- for helping her become just like the others. Lauren, although my student, has in many ways has been my teacher of some of life’s most valuable lessons. Determination is the key to overcoming all obstacles, no matter how big or how small. When you’re tired or ready to give up, there is another way that you can succeed.
7/7/2011 - Today Lauren went for a routine scheduled MRI. Results this time around was no significant change. The tumor itself looked like it may be smaller but the cyst matter looked slightly bigger and/or more of them. Again, nothing significant either way so it's back to a wait and watch game and continue to count our blessings. Lauren continues to make slow and steady progress amongst her periodic setbacks. The plan is for her to attend school in the fall for a half day. Her district just created a small self-contained room for children with slower learning and that is a perfect place for her to get back into the school environment and rejoin her friends in the 8th grade. It will be a tell tale year for her. Until then, she continues to enjoy the summer weather while she endures summer school.
6/12/2011 - It's Sunday night and Lauren is back on her way to ER to have her shunts checked. She has been having trouble walking since Wednesday and said her knee bothereing her. Her PT looked at it and said she was not injured and to just watch her. She also threw up Wednesday night but otherwise seemed fine. Her dad was away and returned home today. Yesterday and today she has been a little more fatigured than usual taking longer and earlier naps so we decided to finally take her to the ER tonight. Her symptoms have been stretched out and slower coming than usual so it will be interesting to see what is going on. It is only 3 weeks since her last revision and the last place Lauren wants to be is back in the hospital.
5/24/2011 - Lauren had a very exciting weekend! She finally got to attend one of her Dad's events and was able to get up on stage with him. Here's a link to a short video of her on stage: http://www.youtube.com/watch?v=8oE9vs8wlJE. The event was held in NJ and was a Millionaire Mind Intensive (MMI). You can find out more about these events at www.peakpotenial.com. She met many of the people her dad works with as well as some of the attendees. Everyone was thrilled to meet her and she was equally thrilled to meet them. She got to give away many of bracelets as well as promote them. For anyone who didn't get a chance to get one at the event, see info on the home page. She hopes to be able to attend events in the future because she had a blast!
5/17/2011 - Lauren had her surgery first thing this morning and the doctor confirmed that the reason for the revision had to do with the mediport removal last night. Apparantly, that surgery somehow dislodged the catheter preventing it from draining properly. All is well now and she will be home in a couple of days.
5/16/2011 - Just a quick update to let everyone know Lauren went for an emergency MRI late this afternoon as we suspected a shunt malfunction. She was admitted tonight to NYUH and will have surgery first thing in the morning. She should be home by Wednesday or Thursday. She is so amazing that she actually participated in school this morning and insisted she was feeling fine even though we saw the subtle symptoms. She really didn't want to go to the hospital and said she is sick of going for MRIs, but we talked and agreed better safe than sorry. I"ll post another update when she is home.
5/13/2011 - Happy Friday the 13th! Today was 1 of Lauren's aides last day today and Lauren took Kaitlyn out to Olive Garden to celebrate which is one of Lauren's favorite places to eat. Lauren also finished taking the 7th grade ELA and Math state tests, so she is very glad that is over. The plan is she will be going back to Miller Place next year to join her friends in 8th grade while continuing her cognitive recovery. She has lots to look forward to and is very excited, especially the 8th grade dance. She is also hoping to attend camp this summer and looking forward to seeing old friends there too!
4/25/2011 - Lauren had a great spring break! She had her mediport out on Tuesday as planned and all went well. She also got to hang out with a couple of her friends, went to the mall and out to eat a lot. A good friend of ours came by with her baby girl, Sienna, and Lauren got to hold her and feed her. Easter Sunday was a lot of fun and great to spend the day we all the people who REALLY CARE ABOUT FAMILY!
4/16/2011 - Lauren is having her mediport taken out on Tuesday at Stonybrook. A mediport is a device that was surgically placed in her chest several years ago so she could receive chemo-therpy and requires maintenace every 6 weeks. She doesn't need it anymore so her doctor's have recommended removing it. It's a fairly simple outpatient procedure and she is very excited to finally be rid of it. We are also coming up on the 1 year anniversary of her coming home from the hospital, that date is May 6th. It's amazing to look back at where she was then and how far she has come. One year ago she didn't have the strength to turn herself in bed. Now she has a full day of teacher's and therapists where she continues to make progress! Other good news is we are talking about her going back to school next year to Miller Place where she can be with all of friends in 8th grade!
4/12/2011 - Lauren wrote a poem for me and I'd like to share it with everyone.
I love you Mom! You are the best mom ever. You make me smile. You take care of me and snuggle with me. Your smile is so beautiful. Hearing your voice makes me smile. I can't wait to kiss and hug you!
3/26/2011 - Aloha!The Hawaiian birthday party was a huge hit. Everyone loved Pina Colada hour (especially the adults). From there, the girls were told their names in Hawaiian and later got their names in Braille. Then they learned how to do the "hula" and Alyssa won the prize for best Hawaii outfit. They played a round of pass the "beach ball" and got to add bling to a pair of sandals. In Lauren's own words, she had a blast! Her daddy made a video montage and posted on youtube, here's the link. http://www.youtube.com/user/spinedoc1992?email=share_video_user
3/25/2011 - Lauren turned 13 today and is sooooo happy she is now a teenager! She is looking forward to her Hawaiian Luau tonight. All her teachers and therapists helped prepare for the party by making Hawaii decoratons, flowers to make Lei's, a red velvet cake, a Hawaiian Pricess crown cake and a cupcake volcano -- that's a lot of cake! We will take plenty of pictures and video.
3/20/2011 - So today is the Equinox and no one could be more excited then Lauren to have the days start to be longer than the nights. She always says she would love to live where it is only Spring and Summer. Last Friday, we took Lauren to have a MRI because of symptoms she was displaying and she ended up having emergency surgery on Saturday. There started to be 1 concern after another and she needed tests that ended up keeping her there for 5 days. She was released Tuesday morning and I'm happy to say she has been recovering nicely and gettng her strength back again. She is also very excited because her birthday is Friday and she is going to finally be a teenager! She is having a Luau with a circle of good friends and can't wait. So, if you have a moment please sign Lauren's guestbook to wish her a Happy 13th Birthday and we wish everyone a Happy Spring! Pics below are rigth before surgery and 1 week later.
3/2/2011 - Lauren is continuing to work hard in all her therapies. In addition to her home schooling and therapies she goes out once a week for PT where she receives electric stimulation on the muscles in her leg and arm and also swims. The stim is to help her re-activate the muscles in those areas and she is getting good response. She is always such a trooper. Below is a pic of her in the pool using the noodle to hold her weight up while doing a bicycle kick. Way to go girlfriend! Lauren will also be celebrating a very special birthday this month. On March 25th she is going to turn the big 13 -- Yes, finally she will be a long-awaited teenager and will be having her first sleep over.
2/10/2011 - If you been reading Lauren's guestbook, you already know that we went to the hospital yesterday for a scheduled MRI and received some fantastic news -- the mass is now at least 75% gone and the brain matter that was compressed is now expanding back into the space that was taken up by the tumor. The inflammation in the brain has also decreased. We're told by the radiologist that you can't measure results from radiaton in weeks and months but more months and years and that we could expect to see further reduction in the mass and swelling. There's every reason to believe she will have continued cognitive and physical improvements as well. Our oncologist continues to tell us she is a miracle and gives hope to other families that the radiation could be used on other children with brain tumors and get similar results. Lauren spread her love, energy and power throughout the day. We started out in the MRI waiting area, where Lauren gave out her bracelets and business cards and got to share her "Apron and Bell" idea with many women who were waiting for their loved ones who were getting MRIs. It's amazing how the sparkle of 1 little girl can brighten an entire room and take away worries, even if just for a little while. After the MRI, we met with many of Lauren's doctor's, phsycolgoists, social workers, radiology team and folks over at the Hassenfeld Cancer center. Everyone was so excited to hear the news and see her so happy and taking steps. There are so many people who contibuted to where Lauren is at and us as a family and "thank you" is hardly enough to express the gratitude and joy in our hearts! We know you all celebrate this milestone of success with us and we thank you and our angels above for all your love, energy and power that you have shared through your prayers and other acts of kindness and generousity! Take a look at the miracle yourself in the pic below, image on left is from Oct 2010 and image on the right is from yesterday.
1/26/2011 - It took Lauren over a week to get over her cold but she is now feeling much better and back to her happy self. She continues to do well in all areas of school and home life and her short and long term memories seem to be increasing as well. Sometimes she wakes up in the middle of the night to tell me things she remembers from years ago! Inside the home we have finally started bathroom rennoations to make things more accessible for Lauren. Outside, we have been getting more than our fair share of snow and have already received over 36" of snow with 2 more storms hitting us today. Today would have been my Dad's 71st birthday. So Happy Birthday Dad! I know he is watching over Lauren from above. He has been gone 8 years now and Lauren still has memories of him too. Below is a pic of her looking pretty in her new skirt:
1/10/2011 - Yesterday Lauren exhibited flu-like symptoms that progressed through the day. These same symptoms can indicate a possible shunt malfunction so by late afternoon we were on our way to NYUH ER. Luckily it turned out to not be the shunts and likely some sort of vrius -- so after a 6 hour roundtrip to Manhattan we are all back home. Today Lauren was feeling much better. I have to tell you, though, that dealing with a potential crisis doesn't get any easier no matter how many times you go through it. The emotional stress of even thinking there is a problem that might require surgery never goes away. It also brings you right back to having gratitude for a "normal" day and appreciate every aspect of not dealing with a crisis, which is all too familiar. I'm happy to say all is well and count our blessings!
1/7/2011 - Happy New Year to everyone! Well 2010 was a long, challenging and memorable year and we are all looking forward to new beginnings in 2011. Every year we have a tradition on New Year's Eve or New Year's Day to write down goals and intentions for the coming year. We set our intentions to clear anything from the previous year that no longer serves us and let them go. This makes room for all our new goals and intentions to manifest. Christopher decided we should all write down 5 goals, so each of us did and here are Lauren's goals to achieve by the end of the year:
1. Eat more healthy and be fit. (This was actually a goal for all of us) 2. Be able to go to the bathroom all by myself and get back to wearing underwear 3. Walk on my own -- no more wheelchair 4. Go back to school so I can be with my friends 5. Make more bracelets so I can spread more Love, Energy and Power!
We hope you set some time aside to reflect back on 2010, count your blessing and let go those things that no longer serve you. Then you too can set some new goals for the coming year and like Lauren achieve it because you believe it!
12/5/2010 - Happy December! The time seems to just fly by after Thanksgiving through to Christmas. Lauren has something on her calendar every weekend. Today she went to a holidy party sponsored by a wonderful orgainzation called Angela's House. It was really amazing -- the placed was decorated like a winter wonderland and there was so much entertainment including mickey and miney Mouse, sponge Bob, a broadway singer, kids put on scenes from the nutcracker and of course Santa Claus. It was touching to see so many volunteers, both young and old bringing joy to all the children.
Christmas is a very special time of the year to let our loved ones know how much we care for them. I was watching Joel Olsteen today, as I usually do Sunday mornings, and today he spoke about how we need to act in faith instead in fear over any circumstance in life that may challenge us. He also said that we all need to remember that we are all Kings and Queens in the eyes of God and need to hold our heads high and know that each and every one of us has a unique strength and gift. It reminded me of how tickled people get when Lauren "gives them a new name". For men, it's King commander master handsome cool dude and for women it's: Nice, young, beautiful, loving, Princess or Queen. Two of the men she said that to at the airport on the way back from Florida, asked me if I could tell them again so they could write it down and 1 of them commented on her guest book on how that was the nicest thing anyone ever called him. A waitress we met while eating at the airport was almost in tears when Lauren gave her the "new name" and a bracelet and told Lauren she really needed to hear that! She reminds people of the good inside themselves and the gift and strengths they each have. People look at Lauren and some see the worst and tell us how sorry they are and others see her for the true joyous and happy spirit she is and are amazed and inspired by her -- just like us.
11/24/2010 - Happy Thanksgiving to everyone! We are thankful to be spending Thanksgiving week with Lauren's grandparents who live in Naples, Florida during the colder months of New York. The weather in Naples this week has been absolutely perfect - mid 80's. Lauren's days have been made up of swimming and lounging by the pool! As we reflect back on this past year, we realize we have so much to be thankful for. Lauren put it best when I asked her what she wanted to share on the blog today and she says: "Thank you everyone for being there for me and my family -- and for being my friend". May you all enjoy this Thanksgiving and the many blessings in your life!
11/14/2010 - We took another video today of Lauren walking in front of our house and posted on youtube, here's the link: http://www.youtube.com/watch?v=TV2dMNq1hN8. She walks with her PT 3x a week about 10-15 minutes at at least a few minutes each day with us. She is very tired after walking and in her wheelchair the rest of the time. As you hear her say in the video with a spark in her eye: "I'm doing it!" -- and that she is "thrilled" to be walking and so glad to be happy and healthy. Not so long ago she couldn't even turn herself in bed and now just look at her! You Go Girl!
11/10/2010 - One year ago today Lauren went to NYUH to have a 6-hour surgery to debulk the mass in her brain and what we thought would be a 3 week stay. One year ago today, we didn't know that Lauren would suffer massive complications and go on to have 15 more surgeries as well as have to endure 28 days of radiation therapy and be at the hospital for 6 months. One year ago today, we didn't realize that we would have to deal with the possibility of losing her multiple times. And 1 year ago today, we didn't know the outpouring of love and suppport we would receive from family and friends to help us get through this most difficult time!
One year later, we are so happy to say that the mass that once was is at least 50% gone and will continue to decrease in size. One year later, we are so proud of Lauren for the progress she has made and the amazing attitude she continues to hold. One year later, we are so grateful for each and every day and have come to understand what a gift that truly is. One year later, we continue to know that we always have a choice as to how we look at our life and can focus on the postive aspects or look at the negative.
As we reflect back on this past year, we know that LOVE, HOPE and FAITH is what has got us through along with our belief that everything happens for a reason and anything is possible if you BELIEVE! In her doctor's own words, Lauren is miracle! And in the words of Joel Osteen "If God be FOR us, who dare be against us"! We could not think of a better way to celebrate this 1 year anniversary than to be back at Mulcahcy's supporting a family in a similar situation. See post below for more details.
We are going to start posting video clips of Lauren's progress on youtube and posted the first one today. Click on the link to view this video of Lauren walking up the stairs in our house: http://youtu.be/9jdHBJa-XtY, Mind you it was the 3rd time she went up and down that day. Below is a pic of her today happily playing doctor instead of patient!
11/8/2010 - It was an interesting weekend for us -- we had a couple of different people reach out to us to share their stories with us and how much Lauren or our family has inspired them. We have to say that we are inspired right back! One person shared a quote with us how a lesson learned is that "We need to enjoy the scenery, even when we are on a detour". I love that because it points out that we don't always get to choose what happens to us, but we certainly can choose how we react to it. Another person's story hit close to home. There is a family that has a little 2 1/2 year old girl named Sophia, who was diagnosed over the summer with a brain tumor and she had to have immediate surgery. Lauren was 2 1/2 years old when she was first diagnosed and we know how in a few split seconds your whole life changes. Sophia went on to have complications from the surgery (all too familiar) and ended up being in the hospital for about a month. It just came to our attention that friends and family will be holding a fundraiser at Mulchahy's which is where Lauren's event was held. It will be this Wednesday, November 10 -- and Nov 10 also marks 1 year since Lauren entered the hosptial to have her surgery. Her family doesn't know this yet, but we plan on being there and may even bring Lauren with us. We couldn't think of a better way to celebrate this 1 year anniversary than to be there for another family going through a similar situation. If you would like more detail on this family and amaing little girl, you can visit her website at: http://www.sophiamarymaglione.com. We hope to see you at their event! Many Blessings!
10/31/2010 - Halloween is 1 of Lauren's favorite holidays! This Halloween was double the fun because she got to go to "Safe Halloween" over at the high school on Friday and then she got to go trick or treating again on Sunday. Her brother also got into the holiday spirit and has a tradition of going out with the same group of boys for trick or treating and then 1 of the mom's has them all back to house for a little party. This year Lauren was a Lollipop Girl and gave out rainbow lollipops to everyone. Here's a picture of Lauren and her friend Morgan.
10/24/2010 - Lauren continues to do well! There is still the ocassional fainting and drinking of thickened liquids -- however, she is making continued progress in all areas of therapy and academics. We now have nurses or aides in place 7 days a week and that is such a blessing too. Last weekend was my birthday I could not have asked for a more special gift than all the progress she has made and her continued recovery. Christopher made his confirmation this week and we celebrated with family and friends over the weekend. Glad to have nothing but good news to share again!
10/11/10 - So, we have some pretty fabulous news! Lauren had a MRI today and though the day started out taking 3 hours and multiple pokes and prods for an IV, followed by hours in the doctors office...it ended up with the awsome news that the mass and swelling in her brain have significantly reduced, upwards to 50%!! We have seen much improvement over the last several weeks but it is always fantastic to have validation with MRI reults. This is the greatest reduction Lauren has ever experienced and our doc feels it will continue. (Radiation continues to have effect for years). You can see in the pics below for yourself. The images on the left are from her last MRI in July and the images on the right are from today. The 1st pic below shows the swelling there was in the brain, which is all the hazy matter you see surrounding the center. The image on the right of it shows hardly any swelling. The 2nd pic below shows huge reduction in the size of the mass! You can see it is a fraction of what is was. Thank you all for you continued love, prayers and support! Special thanks to the Frances Pope foundation for their continued love and financial support as we make necessary modifications to our home to make things easier for Lauren while she continues to recover!
10/9/10 - Lauren continues to have another good week. Though there are still fainiting spells they are brief and less frequent. We go for her next MRI on Monday and are hoping for good news since she has been doing so well. Will post an update.
10/2/10 - Lauren had another good week! The pyschologist met with Lauren's team of teacher/therapists and gathered input from them as well as shared information. It was agreed that the team should meet once or twice a month so they can share strategies and work on a integrated cognitive recovery plan as well. Yesterday was Lauren's cousins birthday. Her name is Kelcie and she just turned 12 and is now the same age as Lauren. Kelcie wrote a beautiful story about Lauren and how happy she is when she is with Lauren. She is so glad to have her in her life. Happy Birthday Kelcie! Below is a pic of Lauren from this morning with her dog Jasper and 1 of the family!
9/26/2010 - I have to say it's been a pretty darn good week for Miss Lauren. Her PT is impressed with the amount of walking she did this week without taking a break. Her OT was impressed with how high she could lift her right arm. There has been little fainting this week and Lauren surprised us all when she asked to play the piano and played "Hot Cross Buns"! She used to take lessons and this was 1 of the very first, simple songs she learned. We're having a pyscholgist evaluate Lauren and so far he had good news that Lauren appears to have all the content in her brain in tact and he will be doing some more tests to see whether the blocks are motor related or retrieval. Once he does that, he will come up with a cognitive rehabilitation plan and share with us and all her teachers and therapists. It was our 18th Anniversary this weekend and it was Lauren's idea that we go out for massages and dinner -- and so we did! I think this is the first time we have been out together in over a year!
BTW - Lauren's custom wheelchair was finally approved and now she just needs to get remeasured and get it built -- we're told this should take anohter month, but at least we are on our way. I have to thank Sonia Codling at CA for helping to escalate with the insurance company to put a move on things!
9/16/2010 - Well it's been another interesting week. Lauren had several days where she was fainting out of the blue. Her blood pressure also dropped pretty low. The docs suggested we increase her fluids and salt and watch her. After a few days of doing that, the fainting alleviated. Other good news is that we bought a used mini-van to make travelling with Lauren and a wheelchair a little easier. It's hard for the boys to look/feel cool in a mini-van but that's the way it goes. We are starting the process of modifying our home to make it more wheelchair accessible/friendly. Insurance will assist with this but it takes forever. We are still waitng, 5 months now, for our insurance to approve a much needed custom wheelchair that will aid Lauren in her mobility and recovery. Hopefully that will be resolved soon.
9/10/2010- Today Lauren had a visit from her 1st grade teacher, Marianne Fitzgerald, who is also a fitness rock star. She held bootcamps over the summer to benefit Lauren. She had people from all over the community come and participate, sweating together, inspired by Lauren. They said her strength gives them strength. Today they presented her with an honorory bootcamp shirt and funds they raised. Below is a pic of Marianne, Nancy and Denise who came over to present her with these items.
9/8/2010 - Lauren had a great Labor Day Weekend and even made it out to an engagement party. Her dads cousin Alice is getting married and Lauren gave the new happy couple an "Apron and a Bell". For those of you who don't know the story behind that, Lauren has been telling girls for years that their boyfriends need to wear an Apron and give them a bell, so they can ring it any time they; need something....then their boyfriend needs to coming running and say: "Yes, my nice, young, beautiful, sweet, princess, what may I get you?
Lauren has also started school, at home of course, and has a great special ed teacher along with a wonderful team of therapists that help her with OT, PT, Vision and Speech. She is really increasing her strength and showing continued progress.
Congratulations again to Alice and Ken on their engagement! Alice...don't forget to ring that bell whenever you need anything! Below is a pic of Lauren and Chris (who has his man voice now BTW) at the party - she really was happy to be there!
9/1/2010 - Lauren continues to do well! Over the weekend we got a call from Marci from Echo Surgical Supply, letting us know that while she was out doing community work, she heard so much about Lauren and wanted to donate a brand new transport chair to her. That was so nice and will come in so handy! The kindness and support we get from our community continues to touch our heart and overwhelms us! Below is Marci, Ryan and Lauren at Echo Surgical Supply in Miller Place. Thanks Again!
8/27/2010 - Lauren continues to have great days! As she likes to say, she is FANTASTIC!! She is sleeping less and less during the day, some days less an hour which is a sign of her increasing her endurance. She is standing up in her EasyStander at least 2 hours a day which can only be helping her get stronger.
On another note, her dad met Taylor Hicks (American Idol winner) and gave him 1 of Lauren's bracelets. Maybe he and some members from the soul patrol will be signing Lauren's guestbook, so we will stay on the look out. Below is a pic of Dennis with Taylor holding Lauren's bracelet!
8/17/2010 - I have terrific news to report. Lauren has been having amazing days! To follow-up from the last blog, she came home from the hospital on Friday, July 30. She did give us a brief scare the following week but all turned out to be well. Since then, she has been having better and better days. We are no longer considering any other surgeries at this time. She has been standing in her E-Z stander 2-3x a day and has figured out a way to dance in it. You go girl! Below is a pic of Lauren in her EasyStander with her BFF Lana.
7/29/2010 - Lauren is improving and eating and drinking a little more each day. She was taken off IV fluids yesterday. She is still not back to herself yet and we all want to monitor her 1 more night here to ensure she can keep up the eating and drinking off of the IV fluids. If all goes well, she will be released tomorrow. The surgery is on hold for now to allow her more time to recover from her shunt surgery and to see what her recovery is over the next week or so. Her oncologist feels strongly it is a good idea, but the neuro-surgeon wants to wait the extra time. In any event, her release is perfect timing as her brother returns home from camp on Saturday. It will be good to be home again!
7/26/2010 - Lauren had another much better day today. She had a little breakfast and lunch and was up more of the day. When she was up, she was conversational and had OT and PT sessions. Her neuro-surgerion came by this evening to speak with us and there was discussion of another procedure to drain/remove the center of the mass as it is likely this is all results of post-radiation swelling. For now, we need to wait to see how she does consistently over the next few days to see what the pattern is and speak direct with her oncologist. I worked out of the Manhattan office today so I could be close by and couldn't resist a pink pair of knockoff DG sunglasses. Pic to follow, as soon as I can upload -- too cute!.
7/25/2010 - Lauren got more fluids through the night and is beginning to re-hydrate. She is still very tired today and drank very little this morning with only a bite or 2. We can only wait and watch to see how she does over the next 24 hours before discussing other options with her doctors. Lauren's speech teacher, Kim, made her a CD of her favorite country songs and was able to get to her right before she left for the hospital. Lauren loves 1 song in particular that hits a soft spot with me as well. Here are the lyrics to "Bring it on home" by Little Big Town". You can also play it on YouTube.
You've got someone here Wants to make it all right Someone that loves you more Than life right here You've got willing arms that will hold you tight A hand to lead you on through the night right here I know you heart can get All tangled up inside But don't you keep it to yourself
Chorus: When you're long day is over And you can barely drag your feet The weight of the world Is on your shoulders I know what you need... Bring it on home to me
You know I know you like the back of my hand You know I'm going to do all that I can right here Gonna lie with you until you fall asleep When the morning comes, I'm still gonna be right here Yes I am So take your worries and just drop them at the door Baby, leave it all behind
Baby, let me be your safe harbor Don't let the water come And carry you away
Oh, bring it on home to me Yeah, bring it on home to me Home to me Oh, Bring it on, bring it on home to me, to me
You've got someone here wants To make it all right Someone that loves you more Than life right here
Here's a pic of Lauren from this morning ~ We love you girlfriend and everyone is here waiting for you to "Bring it on Home"!
7/24/2010 - Lauren was up for a couple of hours today from 1-3pm and drank about 4 oz. of apple juice and had little bits to eat (some jello, graham cracker and a few M&M's). They were only able to access her at 1am this morning so she hasn't even been on fluids 24 hours yet. Her color is good and she was able to speak in complete sentences when she was up and tell us what she wanted. We hope she be strong enough to come home in a couple of days and we will speak to the docs again on Monday.
7/23/2010 - Hey all - it's been a tough couple of weeks here. Results from Lauren's MRI on 7/14 was that the mass has not decreased in size even though it appears to be mostly necrosis. There are some other new concerns as well like some new bright spots showing up which could either be more necrosis (dead tumor) or possibly new growth and her right ventricle looked larger. Only thing to do is to wait another 3 months to see what happens. Our radiologist did tell us that 40-60% of the time the mass does shrink by now, but the other 40-60% of the time he takes a little longer and radiation continues to have effect up to a year. Then over the weekend she became very sluggish and was not really eating and drinking much. So we took her to NYUH on Monday and it took all day at ER to get the MRI and other tests to confirm she did have a shunt problem. She had a shunt revision on Tuesday morning and we were told we could take her home after 8 hours. She was still very sluggish so we waited until the next day to take her home. She continued to sleep a lot that night and the next day and still was not eating or drinking much. We spoke to her doctor and he said we could bring her back to ER but since it was night they could only do a CT scan. The other suggestion was to see how she was in the morning. The next morning she did not look much better so we took her back to ER again today. They took a quick MRI and found that the ventricles were fine. They believe it is just taking her longer to recover because of all the surgeries she has been through. She is very de-hydrated from not eating and drinking so we will keep her there until she gets her strength back and is eating and drinking again. Chris is heading to keep next week, so we can focus on taking care of our girl while he is off having some well deserved fun!
7/14/2010 - Here the pic from Lauren's MRI today. The most recent version in on the left and as you can see the images are roughly the same size.
7/11/2010 - Tonight I went to Sunday Service at a place called Pathyways to Health (http://www.pathwaystohealth.com) in Mt. Sinai. The topic interestingly enough was about miracles. They talked about what miracles are and what different people consider miracles. In any event, the bottom line was that each and every one of us is a miracle and that there are little and big miracles in our lives each day -- we just need to be open and present enough to receive them and be grateful for them. When we do that, we open ourselves to receive more of the same. Each day Lauren is showing us her little miracles...she now wants to watch the shows she used to love like Hanna Montana and iCarly, she is starting to sing along to her favorite songs of Hillary Duff and Miley Cyrus, she is up a little longer each day and is more alert and more conversational. After all she has been through, these are truly our miracles and we are so grateful for them and thought we would share them with all of you!
7/7/2010 - I forgot to mention that yesterday marked 2 months since Lauren has been home! We had another milestone today -- Lauren was able to walk up and down totaling 18 steps. with the assistance of her PT! Up till now she has only been able to walk up 4 or 5 steps at the most. Now that's the kinda progress we like to see. Way to go Lauren!! She will be heading out to Friendly's to celebrate. Pic to follow.
7/6/2010 - Hope everyone had a Happy 4th of July! Lauren had a great weekend and some great days as well this past week. Her days are still mixed but we are grateful for the good ones! She went swimming today in the pool with her daddy and some friends. Below is a pic of her lounging with her friend Alicia.
6/26/2010 - Today was the day of Lauren's pool party and it was a lot of fun for her to see her classmates. Her teacher, Mrs. Hay, came too and brought her gang. Lauren managed to stay up for about an hour. Her friends got to enjoy the pool and snacks! We just want to let all her classmates and friends know it's ok to come by any time over the summer as someone is always home with her. She loves to have visits, even short ones are good as she is still tired most of the day. So call or stop by anytime! :)
6/24/2010 - Lauren had her last doctor's office visit today relating to the immune therapy. (Yay). She continues to increase her endurance little by little. Tomorrow we are having a stair lift installed so she can safely ride up the staircase. And Saturday she is having a pool party with all of her friends and teachers from her 6th grade class. All in all it's been a pretty good week. I also had my first opportunity to give back to the community by volunteering for Extreme Makeover Home Edition. They are building a new home for the Lutz family in E. Setauket which is about 20 minutes from my house. I have been to the project site twice and going back again tomorrow and then on Sunday for the reveal and to say "Move that bus". Lauren loves the show and is hoping she might be able to attend as well. We will see if we can make that happen.
6/16/2010 - We have started a search for a "stair lift" for Lauren and could use some help. Lauren's bedroom and our full baths our located on the 2nd floor and right now it's takes 2 strong people to get her up and down the stairs in her wheelchair so she can sleep at night and bathe upstairs. To get this through insurance would take about 5 months so we are looking to see if we can find 1 that would suit our home either used or donated. She really needs this now, so if you know of anyone that has a stair lift and willing to sell or donate, please have them contact us. We do have 2 staircases that both make a L-turn, so we are going to need either 2 separate lifts that spans 7-9 steps each (most are customizable) or 1 that can make a turn that covers 15-18 steps with a landing in the middle. Thanks for your help. Our home phone is 631-928-2174.
FYI - just got a pic sent from Cathy and Bryan of a shot taken with Lauren in Jamaica:
6/14/2010 - I just found out today that Lauren's favorite show, Extreme Makeover Home Edition, has selected another Long Island family to have their home rennovated. The rennovation will begin next week from Tuesday through Sunday, 6/22-27. The location will be announced after the "door knock" on Monday, 6/21. There will be a pep rally tonight at Duck's Stadium from 6:30-8:30 sponsored by the Alure Home Improvement which is the primary contractor. You can find out more about volunteering at the Alure Home Improvement website or Extreme Makeover. When I told Lauren this was going on and that I was going to volunteer, she immediatley said "I want to help to". Hope to see many of you there!
6/8/2010 - This past Sunday marked 1 month since Lauren has been home from the hospital. She is about the same since my last update and went to the doctor's on Thursday and all was well. I do have 1 big surprise to share with all of you. As you know from my last update, my sister Cathy was married on Saturday to her fiancee Bryan in Jamaica. Chris and I left last Sunday and I had a couple of days alone with him before the rest of my family started to arrive. Chris then got to hang out with his cousins and had the run of the resort. On Thursday morning, I was tracked down and told I had a special delivery in the lobby. I couldn't believe my eyes to see Lauren and Dennis waiting for me. He didn't plan this but on Thursday night he took Lauren to her favorite restaurant, Friendly's. She was so sad and said she missed her mom and not being at the wedding. When they got home, Dennis checked flights and saw he could grab a 6am flight on Friday as well as get on the same flight home as me and Chris. Long story, short - he decided to go and it was an incredible surprise for me and my family. The hotel upgraded our room to a 1st floor ocean front room and we had constant visitors. Members of my family came to hang out with her so Dennis and I could be together at the rehersal dinner and wedding....and of course Lauren got to wear her beautiful Junior bridesmaid dress and participate in the ceremony and part of the reception. I'm sure this memory will stay with her forever and contribute to her healing. To view pictures of the wedding, you can cut and paste the following link and go to Shutterfly: http://share.shutterfly.com/share/received/welcome.sfly?fid=bc3e53ba3ad7778c&sid=ORcuHDhuzZuOg
5/29/2010 - Lauren has been home 3 weeks now and this past week she had good and bad days. We know that is probably how it is going to be for a while. This was also the last week of our home cooked delivered meals. We wrote a special thank you and had Marian Larson, the wonderful woman who organized all those great dinners, send it out. She informed us there was over 80 people involved in that effort. We are so appreciative and can't wait until we can invite everyone over to our house to have a cookout when Lauren is feeling much better. Anyway, the last couple of days have been good ones and Lauren was outside today soaking up some sun and the cool breeze. She kept saying "...this is sooooo nice". Tomorrow I'm leaving for Jamaica with my son Chris. My youngest sister, Cathy, is getting married to Bryan -- who Lauren absolutely adores. Lauren was to be a junior bridesmaid and is very sad she is not going but does seem to understand it would not be fun for her right now. Cathy came over today with my other sister, Annalise, who is the maid of honor and she brought Lauren her dress and bridal gift and we talked about how there will be a ceremony when they get back and Lauren will be able to wear her dress and participate in that ceremony. It is a little bittersweet going without her and my husband but my manager, Alison, said something very true to me. She said this is probably the most time I'll be able to get to spend with my 14 year old son -- while he still wants to be spend time with me. It is a really happy occassion and I am looking forward to the celebration as well as getting some long awaited rest and relaxation.
5/21/2010 - Lauren has been home for 2 weeks now and we are all getting settled back in. It is wonderful to have her own. She does have a hospital type bed in the family room that she sleeps in most of the day. Dennis and I carry her up and down the stairs each morning and night so she can sleep at night upstairs. We are considering a stair lift for her but wanted to wait to see how long it might be before she could climb steps. She has started all of her related therapies, OT, PT, Speech and Braille. We feel very blessed that the school has provided these services and that the PT we found has a lot of experience with rehabilitation. Her fainting episodes have significantly reduced and though she did have a few days of throwing up immediately after eating, that seems to have subsided as well. Lauren's Uncle Frankie and Pop Pop came out and together with her dad built a ramp for her in the garage so 1 person could easily get her in and out of the house in her wheelchair into the car if they had to. Next week she goes back to the oncologist for a follow-up visit and another immune therapy treatment.
5/12/10 - Lauren had her first visit back to the city today for blood work. Lucky for her she did not have to step foot in the hospital, just to the doctor's office 2 blocks away. Today we also had a meeting at school to set up her related services at home - which will begin tomorrow! Big shout out to the Miller Place School District for being right on top of things for Lauren! Her teacher and classmates all miss her and she misses them too. We hope to have all her classmates come visit by the end of the school year.
5/10/10 - Today marks 6 months since Lauren entered the hospital to have her 1st surgery back on November 10. Her first 5 days at home have been mostly rest. She has had a visit from her friends Morgan and Erika and other than that has been chatting with her other friends and family on the phone.
5/8/10 - Lauren is sooooo happy to be home and we are sooooo happy to have her here! The first night back she slept in bed with mom but last night she insisted on sleeping in her bed and had a great night! We have received all the equipment Lauren will need to continue her care and therapies at home. She has a electric bed set up in the family room and goes up to her room at night to sleep. Her home therapies will begin end of next week. She will continue to go to the hospital once a week to have blood work and receive her immune therapy shots for the next 6-8 weeks.
Today we also had a visit from Valerie and Chris from the MIller Place Homemakers club. They along with other members of the club made Lauren a beautiful heart quilt using all different textures of fabric. They also made 2 heart pillows, 1 for Lauren and 1 for Chris. Lauren presented them back with bracelets for everyone in the club.
5/6/10 - Hooray :) :) :) Today is finally the day Lauren is coming home!! She was screaming to me on the phone early this morning she was so happy! Dennis also sent me a pic that he has hanging on the wall in her room. I was expecting to see Lauren waving or something - instead I saw the pic below -- and it made me laugh...
Lauren told me she wrote me a poem and I thought it was for Mother's Day that maybe she did in the art room. But Dennis said she just woke up in the middle of her night last night in the hospital and asked if she could write a poem for me....and here it is:
Roses are Red Vilolets are Blue I'll always be There For You!
Well, right back at you Lauren -- I will always be there for you too! I have all the things Lauren asked for waiting for her at home today which include Cheese Doodles and Kraft macaroni and cheese. There's also a dozen "Hot Princess" roses to welcome her home! Can't wait to have you back girlfriend! <3 <3 <3 MOM
5/4/10 - Today Lauren woke up with a smile on her face for the first time in a really long time. When asked why, she said it's because she knows she's going home. So, yes she is still on track to come home this Thursday. It doesn't almost feel real yet and probably won't until she is here. It has been 6 long strenous months for us all. She is really still so tired that we decided to not have any fanfare for her coming home - just her family and her dog and the wonderful feeling she will get from being back in her home! She also started her immune-therapy today so we will be back to the hospital once every 2 weeks for then next 2 months. We look forward to having our little girl back home where she belongs! I'll probably move to updating the blog about 1x a week or if there are any signifcant events. Thanks to you all for your love and support!
5/3/10 - Lauren came home yesterday which was especially nice because it was my sister's bridal shower and she got to see Cathy and her fiance Bryan -- who she loves. She did sleep most of the day but was good in that she had none of the fainting spells. She is due to start her immune-therapy on Tuesday and her release date is still targeted for Thursday. We have a meeting with her school next week and she will resume her home based services following that meeting. Anyway, that's the plan!
4/30/10 - So far we are getting all good results from all the tests Lauren has taken. She had a full brain and spinal scan yesterday which was about 2 hours and she layed still through the whole thing. She is amazing! Most kids would need a sedative at least for that. When Dennis thought she was sleeping he gently spoke to her and she said "I'm up". That child knows how to preservere! Anyway, the docs believe they understand the correlation of the symptoms she has been displaying and are attributing it to her high blood pressure med. They feel they just need to continue to lower the dosage until it eliminates the fainting spells but enough to keep her blood pressure down. They feel pretty confident they can get this in check and will still allow her to come home on Sunday and looking to release her Thursday! Stay tuned for the final update on her coming home!
4/28/10 - Lauren is going through a battery of tests in order to obtain medical clearance and we still have a few more tests to go, a full brain and spine MRI and then the results of it all. Dennis was funny yesterday when he said we will be going home in diagnostic glory! On a good note, Lauren's congestion has finally broken. She is getting excited that we are days away from coming home again. We are nearing the 6 month mark -- so I really hope that is 1 milestone we don't see. On the homefront, our community continues to overwhelm us with their generosity and support. It's hard to put into words how it feels to have some much love and support. Christopher actually wrote several poems this past week that are really deep. They are all below. One he wrote about his sister and called it "The Warrior".
The Warrior “Fear Not”, the warrior cried. “We will not fear” her friends obliged. On they marched into the night, the finish line just out of sight. An army of heart, soul and mind, this army is one of kind. The battle roared And the fires blazed. As flags soared And enemies grazed.
To champions of none And champions of all: You cannot break this army, They will not fall.
For they have skill that little know. They’ve conquered fear and all of fears foes.
The Rope I see my goals, my dreams, my hopes. I’ll make them happen; I’ll climb the rope.
It won’t be easy; I’ll tell you that. I’m not alone and that’s a fact.
All may try but few succeed the ropes too high and out of reach.
I will fly With great speed To reach the top Is what I need
When it’s over And my skill is true I’ll throw my hand down And reach out to you.
What do you see? Look North What do you see? It could be a house It could be a tree
Look up What do you spy? It could be a cloud It could be the sky
Look at yourself What do you find? All that matters Is your heart Next to mine
When Two plus Two is Four When 2 plus 2 is 4 I’ll raise my fist To the idea of war
When 2 plus 2 is 4 I’ll shake my hand At those who refuse To aid the poor
When 2 plus 2 is 4 I’ll open my heart To you and many more
4/26/10 - We were able to take Lauren home yesterday and she had a great day aside from the fact that she had several episodes of her knees buckling followed by her losing consciousness for a split second upon transitions from sitting to standing. It also happened twice when she was coughing which was pretty scary. The docs still think it may be related to the high blood pressure medicine even though they have reduced dosage by half on Thursday. They have stopped that medication as of today and will be totally out of her system by Thursday. They are running some other tests to ensure all else is well as she still is very congested from a cold.
Lauren is also still really tired and is being attributed to culumulative post radiation exhaustion and called "sombulant syndrome". We had a family meeting today with all her therapists and everyone is in agreement that once we isolate what is causing the fainiting episodes -- here it finally is -- that she should COME HOME so she can get solid rest and receive home thearpy. Then when she is able to fully participate in therapy again, she can go back for outpatient, or if deemed beneficial, a few more weeks of inpatient.
She also is ready to start the next phase of treatment which is immune therapy. That just consists of getting 2 shots every 2 weeks for 6 weeks. With any luck, she can be dischaged as early as the end of the week or more than likely beginning of next week. So, Lauren is still presenting much in the way of medical complexities, but we are finally beginning our phase of planning her discharge and life back in Miller Place!
4/23/10 - Lauren continues to participate in her therapy at Rusk despite how tired she is. Her schedule has been set up so she can sleep between therapies. She is still congested with her cold and seems to be taking her longer to get over it than it took me or Dennis - probably due to her weakened state. The docs don't have any concrete answers why she seems to go weak and collapse. It's happened maybe 4 ot 5 times and her heartrate drops significantly. It mostly happens when she goes from sitting to standing or vice versa. She will continue to be monitored. We still plan to take her home this Sunday. She hasn't been home since Easter. We continue to pray that she will come home for good very soon.
4/21/10 - Lauren moved back to Rusk last night and had her first day of therapy today. She slept a lot in between therapies but is participating. There is relatively new problem which is over the last several days Lauren's body just gives out and she collapses. They put her on high blood pressure medicine and we're not sure if that has anything to do with what is going on now. The doctors are all aware and we will continue to observe what and why this is going on.
4/19/10 - Lauren did get doctor approval to move back to Rusk but is pending insurance processing. There is still the concern if she will be awake enough during the day to participate in therapy so we will need to wait to see how that goes.
4/17/10 - Lauren has been up a little more the past couple of days and is still eating and drinking well enough to not need any fluids via IV. She still has her cold and is congested with a cough so it's even more important for her to not lay in bed all day. There will be a conversation on Monday to see if she is up to moving back to Rusk.
Lauren's brother Chris returned last night from his 3-day trip with the entire 8th grade to Washington, D.C. He is also sleeping most of the day today -- but had a great time!
4/15/10 - Lauren is still in the hospital and sleeping most of the day and night. Her dad and I were both sick this past weekend and into the week and 1 of us gave her whatever we had and now she is congested. Pretty good that none of us have been sick prior to this. In any event, the docs are saying they will give her another week before taking another MRI to check on how the tumor is doing unless things improve or get worse on its own. No baceteria has grown out of the cultures so no infection and shunts are draining fine. Only course of action to take is to put her back on steroids to reduce the swelling of the tumor or extract the fluid via a surgical procedure which exposes her to risk of infection. So, that's why we sit tight for now.
4/14/10 - Lauren had an eco-cardigram this morning to rule out a blood clot and everything looked fine. Her vitals also remain stable, therefore, she has been cleared to go back to Rusk. Even though she is sleeping most of the day she can at least participate in what she can and get bedside treatment if necessary. The docs have told us that this is a known thing to happen after radiation where there is extreme fatigue and swelling of the tumor, sometimes called "tumor burn" as the radiation continues to have residual effect on killing the tumor cells before they divide.
BTW - Lauren also had a visit yesterday from her favorite neuro-surgery reisdent, Dr. Steve -- also known by her as Dr. McDreamy. He just returned from his honeymoon with wife Rebecca in Hawaii. Lauren bestowed another 1 of her bracelets to the newly married doc and he displays it below next to his girl...
4/13/10 - Prelimary results show that Lauren does not have an infection. The cultures will sit to see if anything develops, but initally things look good there. Lauren's oncologist was here today and showed me the MRI. The tumor volume has enlarged but it is mostly fluid and/or some kind of tumor debris. They want to wait a few days to see if it will collapse on its own or if a surgical procedure is necessary.
As you can see from the pic below, the image on the left is prior to radiation and the 1 on the right is from Monday. The white matter in the center is tumor mass and the dark area within the circle in the systic/fluid debris. It still looks encapsulated within the tumor and the hope is that this will collapse/release on its own.
4/12/10 - Lauren was moved back to the hosptial side of the house at NYUH for monitoring and to await a MRI with contrast on Monday. We are still waiting for a timeslot as of this morning. Lauren is in good spirits but same symptoms as the weekend which is very tired, can't really keep her eyes open for too long even when up and some head and chest pain upon transisitions. It could be a slow shunt clog or an infection of some kind is also possible. I'll post another update after we get the MRI results.
We had to wait until 3:30 for the MRI. The MRI revealed that the ventricles are fine but did show there is some swelling of the tumor (overall increase in size) that is likely due from the radiation treatments. It also looks systic in nature which means filled with liquid or necrosis (dead tumor). This is not necessarily a bad thing as radiation can have this effect for months and even up to a year. They can do a surgical procedure to try and drain some of this fluid as well. Before doing that, they are checking for infection in the CSF (cerebral spinal fluid) and in her blood. They did a shunt tap tonight to remove some fluid and took blood from her vein as well as from her medioport to continue to rule out where the problem may residing. Some results will be in tonight and the rest by tomorrow. Based on those results, action will be taken and good news is regardless of whatever this is, it can all be treated.
4/10/10 - As many of you know who have been following this blog, today marks 5 months since Lauren entered NYUH. The good news is she is continuing to get stronger and started taking steps on her own while being guarded. Unfortunately, the last 2 days Lauren has grown in fatigue and other all too familiar symptoms that indicate a problem with the shunt. She did have an MRI scan and it showed things look ok, so she is going to be monitiored and at this point and not come home tomorrow.
4/8/10 - Correction that today is Bryan's birthday! Happy Birthday to Bryan with nothing but love from Lauren!! For those of you who don't know who Byran is, that is Lauren's future Uncle -- who she looovvveeesss. He is marrying her Aunt Cathy this year and Lauren is in the Bridal party.
4/6/10 - Today is a very special day so Lauren got all dressed up. She is wearing a skirt, earrings, bracelet and necklace -- so she could look beautiful for Bryan's Birthday. Happy Birthday Bryan from Lauren! And she is having a FANTABULICIOUS day!
4/5/2010 - Lauren had another great day at Rusk and got measured for her wheelchair. She participated in all her therapies and she was very independent today. She also was able to stay up until 2:30pm which is fantastic!
4/4/2010 - Since Lauren had such a great week she was able to come home for Easter. It was a day filled with many blessings! She was so happy to be home and to see her dog Jasper! My entire family came over (including Bryan - my future brother-in-law who Lauren simply adores) and brought "everything" over so we didn't have to do anything but host. The day was beautiful and Lauren got to enjoy lounging on the deck. When the kids went hunting for Easter Eggs, Bryan took her around on the deck to help her fill her basket. After a lovely dinner, we had a visit from some new friends in the community who presented our family with wonderful gifts. It was truly a blessed day and Dennis and I continue to be touched and overwhelmed by love, support and generosity of our family and friends!
4/3/2010 - Lauren had a great day and we decided to take her over to the circus at Madison Square Garden. It was our first family event since she was admitted to the hospital. She was done by intermission and her favorite part of I would have to say was "Cracker Jacks".
4/2/2010 - Lauren has been having great days back at Rusk! All her therapists feel she is stronger. She is making good progress and walking with a regular "walker". She finished the last of her anti-biotics yesterday and now no longer needs an IV pole. She is so happy she no longer needs to drag that pole around with her or has any tubes hanging out of her body!
I received a letter today from a teacher, Lori McLean, both Lauren and Chris had back when they were in CA's Daycare and have to share 2 things she wrote. First she remembers when Lauren celebrated her 1st birthday and her dad came in with flowers. Most parents bring in cupcakes or balloons and she remembers Dennis saying he brought Lauren flowers "because he wanted to be the first man in her life to give her flowers". The other memory she shared was of Chris in kindergarten. Around St. Patrick's Day she shared a story of an Irish Wishing Stone and told the children they could each hold the stone and make a wish -- but it couldn't be for anything material, only for things like love, heath and happiness. It's a hard concept to explain to 5 years old's and she has never forgotten that when Chris got the stone he wished for his sister's eyes to be better. She has gone on to tell that story for 11 more years and think's of Christopher's wish each time she tells that story. Thanks for sharing the memories Lori!
3/31/2010 - Lauren moved back to Rusk today -- Hooray! Now a new countdown begins...days until she finally comes home. We are planning on taking her home for Easter on Sunday as well!
3/30/2010 - Rusk has been postponed another day. Lauren did fine today but the doc down at Rusk wants to wait 1 more day. He didn't like the way the ventricles looked in the MRI scan even though the neuro-surgeon felt they were basically the same size.
3/29/2010 - Lauren was supposed to move to Rusk today but she threw up yesterday and again today right after lunch. She also experienced some chest pain in the early morning and a chest X-ray showed all is fine. Neuro-surgery just ordered a scan and we'll see where we go from here. Her blood pressure has also been a little high. Despite all of that, she looks and is doing great.
We got an update from neruo-surgery that the scan shows the shunt and ventricles are fine. The vomiting can just be a residual side-effect of the swelling from the radiation. This actually makes sense because she started throwing up during the last few days of her RT treatments. This should subside in the coming dahys and weeks. The gameplan is that she moves to back to Rusk tomorrow.
BTW - I am continuing to update the Fundraiser-Thx tab and call out the names of folks who help make the event a success. Just waiting on photos to come in. If you have any photos of the event to share, please send to email@example.com. Thanks!
3/27/2010 - Lauren was very sleepy today and seemed a little out of it this morning so an MRI was taken. It showed that the ventricles look fine so she will continue to be monitored and watched. She woke up for some playtime in the playroom and dinner.
Please also visit the "Fundraiser-Thx" tab for a recap of the event and photos.
3/26/2020 - So far so good today! Lauren's vitals are all good and she is in much better shape today than she was 24 hours after the surgery on Tuesday. The gameplan is to keep her in the hospital and move back to Rusk on Monday. So no coming home again this weekend (boo hoo) but should come home for Easter! She had a nice birthday get together last night -- Chris and I were there, her Aunt Marion with cousins Kelcie and Julianne -- and a surprise showing of Aunt Cathy and her favorite soon-to-be Uncle Bryan. She slept through most of the gathering but managed to open her eyes when "Bryan" was announced and then again for yellow cake with chocloate frosting (her fav). There was another party for her today by hospital staff and friends and we will be sure to celebrate when she comes home next Sunday -- does it ever end??
3/25/2010 - Well it's Lauren's 12th Birthday today and instead of moving down to Rusk she is being scheduled for another surgery. Her shunt line that was moved to the stomach is not draining. So the doctors are consulting about what to do and right now the plan looks like it will be to move the shunt line to the area around the heart. They may have to remove her central line to remove risk of infection - so oncology is being consulted as well. Not the day that we exactly planned for our little girl...
3/24/2010 - Lauren was still in discomfort today so they set up a morphine drip for her. She slept most of the day and is being watched for her high blood pressure and respiratory rate. This could be normal because she had to have a new tube tunneled to her stomach and it can be quite uncomfortable the first 24 hours. We hope her birthday day tomorrow is much better for her! Her dad made put up letters in her window that you can see from the street below, if you happen to be on the FDR and on 34th street you can't miss it, just look up and you will see:
Having trouble uploading photo but it says in huge letters: LAUREN ROCKS!
3/23/2010 - Lauren went into surgery 7:30am this morning and was back resting comfotably in her step-down unit by noon. The surgery went well and the surgeon decided to just put 1 valve in, which means only 1 tube into the abdomen area. Now there is only 1 place to look should there ever be any problems. The gameplan is a couple of days for recovery and then back to rusk, hopefully by Thursday. It is my belief that worst is truly over and we are now moving into phase 2.
3/22/2010 - Lauren just completed her last radiation treatment...HOORAY! Her 2 RT techs, Jen and Jessica got her a talking Build-A-Bear and named her HEARTS because of all the LOVE they have for Lauren and stuffed the bear's little pocket book with Swedish fish. When you press the hand it says: I Love You, I Love You. Anyway below is a picture of Lauren on this very happy day with Jen and Jess wearing the 2 masks that were made for her. I asked if we could burn them and they said we could boil them and it would go back to it's orinigal shape -- I think we just might do that. As for her surgery, it has been postponed until tomorrow morning.
Recap from the Fundraiser event is below on 3/21 -- thanks all again!
3/21/2010 - Today was the day of Lauren's Fundraiser and what a turn out! Before I talk about that, I'll give a brief update on Lauren. She received another radiation treatment this morning and has her LAST treatment is tomorrow. Her cultures have all come back negative so tomorrow is the 5th day and they are considering doing her surgery tomorrow afternoon instead of Tuesday. That means she could be back to rehab at RUSK by Wed or Thursday!
As for the event, we were overwhelmed with the turnout and it was a very emotional day for us -- over 300 people came today! We were able to SKYPE Lauren at the end and she was so thrilled to be a part of it. The crowd sang Happy Birthday to Lauren and she was smiling ear to ear. We can't thank everyone enough for everything they have done to make this possible and such a success...friends, family, volunteers, teachers, friends of friends...it was just incredible! And special thanks to Uncle Mike for hanging out with Lauren so Dennis and I could both spend some time at the event!
We tried to say hello to as many people as we could and apologize if we didn't get time to say hi personally. Dennis, Chris and I all got to say something on stage. Chris thanked everyone for supporting him through this, I spoke of how Lauren came up with the idea to make bracelets many years ago and to put LOVE, ENERGY and POWER into every bead. That LOVE, ENERGY and POWER has come back to us 100 fold!
Dennis made a very emotional speech and I put his words below in case you missed it. I also want to thank Lauren's cousins, Julianne and Kelsie, for making the bracelets that were given out at today's event and Jessica for making the photo montage of Lauren that played today. We gave out over 300 bracelets today and of course you can always get more throught the website. Here is what Dennis had to say today:
Charles Swindol wrote: "The longer I live the more I realize the impact of attitude in life. Attiude is more important than facts. It is more important than the past, than money, than education, circumstnaces, successes, failures or what other people may think, say or do. It is more important than appearance, giftedness or skill. It will make or break a home, company or church. The remarkable thing is that we have a CHOICE every day regarding the attitude we embrace for the day. We cannot change the past or the fact that people will react a certain way. We cannot change the inevitable. The only thing we can do is play on the one string that we have, and that is our attitude. I am convinced that life is 10% what happens to us and 90% what we do with what happens to us."
Whenever I think about the importance of attitude, I think of Lauren. She is a social butterfly with the unique ability to make friends instantly and permanently. People seemed to be attracted to her wherever she is. She thrives on cheering people up when they are sad or not feeling well. She is like a happiness vending machine. But the most striking thing about Lauren is the color of her eyes and they seemed programmed to only see the goodness in every person and every situation. Just about everyone who meets her says she has the most incredible blue eyes they have ever seen. And I have to agree with them.
But there is 1 thing about them that a lot of people don't notice right away and it's this: She is blind. At the age of 2, Lauren was diagnosed with a brain tumor that has caused her to lose most of her vision. Over the last 9 years, Lauren's world has gone from blurry to black. Over the last 9 years, she has been sickened by 3 separate courses of chemotherapy. Over the last 9 years, she has been poked and proded by more doctors... Over the last 9 years, she has been stabbed by more needles than any child should. Over the last 9 years, she has had over 15 major surgeries. Over the last 9 years, she has lost most of the use of the right side of her body.
And, over the last 9 years, she has never once chosen the attitude of self-pity or despair Never once, has she ever complained or became bitter about the way things are or how they should have been. Lisa and I share this belief system. But there is another attitude we would like to share with you today and that's GRATITUDE! There is a saying that "In Prosperity your friends know you, and in adversity you know your friends!"
Lisa and I along with Christopher and Lauren want to let you all know how UNBELIEVABLY lucky we feel to have such incredible friends and family! Your love, prayers and support have been beyond anything we could have imagined! From the bottom of our hearts, we thank you!
3/20/2010 - Lauren was able to get radiation again first thing this morning and threw up again after dinner. Luckily there are only 2 treatments left. She is very excited about the fundraiser tomorrow! She had several of her guests come visit today that flew in from the east and the west. Selena is a 8 year old girl who flew in with her family from Vancouver Canada to come to the event. Her Mammie and PopPop flew in from Naples. We are looking forward to seeing all our friends and family there!
3/19/2010 - Radiation Therapy finally has 1 machine back up today and Lauren was able to get a treatement. RT is going to be open both days over the weekend, so her LAST treatment day will be Monday! Hooray!! She did throw up after dinner :( boo, so not sure if that is from radiation or not. We're hoping her surgery can be scheduled for first thing Tuesday and to get back to Rusk by Thursday -- BIRTHDAY DAY!
3/18/2010 - Well the good news today is that Lauren's culture for infection came back negative and the interim surgery has now been cancelled- YAY! She was, however, confirmed for C-diff again, which means more/longer anti-biotics. They have upped her to received anti-biotics 3x a day vs. 2. Radiation equipment is still down and there is hope it will be up by tomorrow. They will be open on Saturday, so the plan is for her to have radiation tomorrow, Saturday, Monday and Tuesday. Then she will be finished with RT and her surgery will be scheduled for late Tuesday or early Wednesday! Her Birthday is Thursday, so hopefully she will be back in the home stretch by then, just needing to finish up with acute rehab!
3/17/2010 - Today is the 3rd day the radiation equipment was still not ready and while this is not ideal, Lauren's radiation continues to be put on hold. Our surgeon has decided to wait for results from today's culture before doing an interim surgery and results are still pending. Our girl continues to have amazing spirits and her dad was able to get her in a wheelchair and take her to the playroom, so at least she got out of the hospital room. As Lauren would say: Love, Power and Energy! :)
3/16/2010 - Today's highlights are radiation was cancelled again today due to flooding. It's expected to be ready by tomorrow. We also got the results that her test for bacteria came back positive from yesterday. Our surgeon said if results from today are positive again tomorrow, he will want to do an interim surgery to replace all the shunt hardware then wait for 5 negative cultures and replace the shunt hardware again. So we are praying for nothing but negative results. On the good side of the house, her chest tube was removed today and was pretty painless. She remains in high spirits and continues to make and give away her infamous braceletes. We received a pretty nice complement today from a nurse in ICU - she said staff and other parents there can't believe Lauren's attitude through this whole stay and feel it's a reflection of us -- and the one thing they notice and feel makes a huge difference is that we just treat and love Lauren like she is a normal child -- it's never ocurred to us to treat her any other way!
3/15/2010 - Lauren had a good night's sleep last night and in good spirits today. Radiation was cancelled due to the cellar, where radiation oncology is located, getting flooded due to all the rain we had over the weekend in NY. They should be back in operation tomorrow and she will still be able to finish out her radiation this week. The chest tube should come out tomorrow which will make getting radiation a whole lot easier. The doc confirmed that Lauren does have an infection based on a 2nd culture coming back positive. This means she will need to have all the shunt hardware repalced (valves and tubes) along with moving the tubes back to the abdomen. Suppoosedly, this bacteria can go dormant and can hide anywhere along the lines and valves. Our doc feels this bacteria could have been present and responsible for all the shunt complications after the initial surgery back in November. She will continue to stay on anti-biotics for a week post-surgery to ensure the bacteria has been cleared. So to recap, the chest tube should come out tomorrow, radiation complete by Friday and surgery on Monday or Tuesday with a few more days in the hospital to recover. She should get back to rusk by end of next week and hopefully does not have a lot of regression from a rehab perspective. She is so incredible for enduring all of this with the positive attitude and spirit that she has. She continues to give out her bracelets and business cards and is so looking forward to finally, finally, finally coming home!
Below is a pic of her today with another 1 of her favorite men, John D'Arcy and his mom Margaret (Dennis' Aunt). She was thrilled they brought her a vanilla shake and boston creme donut - 2 of her favorite things!
3/14/2010 - Lauren finally came around and woke up fully at 4:30pm yesterday. She was alert and talking and it was good to finally have her in that state. One culture did come back postive for infection so she needs to start a round of anti-biotics and she also got a course of steriods (hydro-cortizone) to help give her immune system a boost. For whatever reason, she was up all night long -- in good spirits, just wanted to eat, make things or do anything but sleep. She also stayed up most of the day and crashed around 6pm tonight. The chest tube looks like it has drained the remaining fluid from her chest and we just need to wait a few more days for the lung to heal before it can be taken out. As for the shunt tubes -- they cannot go back in the lung. Our surgeon has decided to move the tubes back to the abdomen area once we have 5 days of negative cultures. The abdomen is really the best place for these tubes -- the only other place is the heart (atrium) area and that presents more problems if there are complications. That timeframe brings us to the end of next week and the surgery at the earliest will be Monday and then she will need a few days to recover from that surgery. So the early will we get back to Rusk is 1 1/2 weeks IF there are no more positive cultures. This elongates her stay here. There is no reason why she can't finish up her radiation next week, but unfortunately will not be making it home next weekend and won't make it to the Benefit. We do plan on SKYPEing her in though! I'm guessing she'll need 2-4 weeks more at RUSK for her rehabilitation which puts her off coming home until end of April. So, with all that said, good news is she is doing good and only 4 more days left rediation! Dennis and I will work it out so that we can both be at the Benefit and thank everyone again for their kindness, generosity and prayers!
3/13/10 - Lauren' s surgery went well last night. She was in OR for over 3 hours. They took almsot half a liter of fluid out of her chest and left a tube in to drain any remaining fluid. So now she has the shunt tubes and this drain external on her chest. The doc said the fluid does look "infectious" and she will more than likely need to be on another round anti-biotics. She is in some discomfort from the incisions and getting small doses of morphine for the pain. She is hungry and eating small amounts of food though she is very groggy. Please hold her in a loving space so she can heal quickly.
3/12/2010 - Lauren was moved back to ICU today. They took a chest X-ray yesterday after continued discomfort and had her on the pediatric floor for montioring. The X-ray showed there is more fluid build-up and is now significant. So the plan is to remove the excess fluid from her lungs, which will require a surgerical procedure and to externalize her tubes while they check the fluid for infection. Since she was lethargic all day today, a CT scan was taken and showed that the left ventricle is not working, so she also needs to have left shunt revision. It will be a few days before they know if there is any infection. Either way, the tubes need to be relocated to a new spot. She had her radiation therapy this morning so she only has 4 treatments remaining. Chris and I are headed into the city so we will all be together this weekend. If there is an infection she will need to have all the tubes and valves replaced, if there is no infection, the tubes just need to be relocated either back to the stomach or to the area by the heart. The surgery will likley be Monday.
3/10/10 - Today marks 4 months since Lauren has been at NYUH and/or Rusk. Her therapists and doctors are happy with her slow and steady progress. She is still being watched for her shallow/rapid breathing and unexplained chest pain. Her daddy took her outside for lunch today and she got to enjoy a NYC dirty dog and the beautiful weather. We hope she can make it home this Sunday and will be well for her big event next weekend! Countdown: 6 more days of Radiation Therapy.
3/9/10 - Lauren is still having low chest pain on her right side when transitioning up and down and turning in bed. She participated in all her morning therapies and even walked about 50' with the walker today. She is such a trooper! We had our weekly meeting with her radiologist today and he remains impressed with the fact the only side effect is fatigue and is very happy that she has light perception. He says the RT may be giving the fibers in her optic nerve a chance to regenerate - wouldn't that be wonderful! Lauren cried she was so happy to hear this news! Only 7 more radiation treatments..
3/8/10 - Lauren made it outside a couple of times yesterday but in the evening she had some bad bouts of chest pain again. We ended up doing additional tests to start ruling out critical problems including a blood clot in her lungs. All tests have come back negative but her white blood count is a little elevated. Her neuro surgeon came by this morning and said it's possible the shunt tubes are causing irritation and inflamation. The only thing to do is to give her motrin and watch her over the next couple of day and hope is subsides. If it doesn't other things will have to be pursued - just don't know what that is right now. It was also mentioned that the fluid in her lungs may be more than CSF it could be tumor debris which could be contributing or responsible for the irritation. In any case we didn't get back to the room until 2am. She slept in until 10 this morning and is still in pain when transitioning or breathing heavy.
Evening Update: Lauren had a pretty good day despite her occassional chest pain. The pain seemed a little less excrutiating today. She had 2 surprisee visitors, Trish and Dan Daly who brought her boston creme donuts, which is her favorite treat. She participated in most of her therapies today and had her radiation. We went for a walk by the river in the afternoon since it was such a beautiful day! Lauren loved the feel of sunshine on her face. She made some calls to her favorite friends and when we got back to the room around 5 she had dinner and went to sleep. She woke up briefly and had chocalate chip cookies and milk. Her surgeon came back tonight to see how she was doing and said he will continue to monitor her and hopefs this will pass. No matter how bad she felt today she told everyone she felt Fantastic! 8 treatments left of RT!
3/7/10 - Lauren has been doing good the last several days but last night she was having some abdominal and chest pain causing a lot of discomfort. The docs took chest and stomach X-rays today and we are waiting on hearing the results. Needless to say, she is not making it home today. Countdown: Only 9 days left of radiation!
3/3/10 - Lauren had another good day today...Working/Sleeping 2 weeks 2 days left to radiation and same countdown to the weekend of the Big Fundraiser Event! If you know you are attending, it would really help if you purchased your tickets in advance! You can contact Trish Daly for tickets or more info at firstname.lastname@example.org.
Lauren would like to shout out to her Aunt Colleen who was a fellow resident at NYUH yesterday for a minor outpatient procedure. Hope you feel better soon and liked the card and candy she sent you! Uncle Mike don't forget to give Aunt Coll a bell so she can ring it when she needs something and you need to come running saying: Yes, my beautiful Queen! (Oh, and wear an apron too please)
3/2/10 - Today was the weekly meeting with the radiologist. He said what's happening with Lauren is impressive -- only side effects she is experiencing is extreme fatigue (which is normal) and we validated again today that she has light perception. He said there is no need to take a MRI now. It would only be taken mid-way through if there were serious side effects and concerns things might be worse. A MRI at this point would not change how his manages her treatment plan so the next MRI will be planned for the week she completes radiation. There will be a family meeting with all the docs and therapist in another week or 2 to discuss her progress and timing of her release. We've been told it's possible for her to be released at the completion of RT if her progress remains steady or they might want to keep her 1 more week to ensure there is no dip. Countdown now is 2 weeks 3 days!
BTW - Lauren's Fundraiser event is now less than 3 weeks away! If you are planning on attending, it would be greatly appreciated if you could purchase your tickets prior to the event so we have a count to give Mulcachy's for food. Contact Trish Daly to see who you can purchase tickets from locally. Click on Fundraiser tab for details.
3/1/10 - Lauren is pushing herself to work hard. She cried today during PT because of fatigue - yet is still willing to push on. When she has any breaks in the day, it's back to the room for rest. Rest isn't an easy thing either with only a curtain that separates from you and your neighbors. It is a full house these days with 5 girls in 1 room - each recovering from different things and each at a different level. The thing they all share in common is the desire to go home as soon as possible. The parents all feel the same way, exhausted by the need to take care of their child in the hospital, children at home and outside jobs. It's the love you have for your child that keeps you going and the prayer that 1 day soon this will all be over!
2/28/10 - Lauren made it home again today and though she slept a lot it was nice to have her here! She had a visit from some friends and is really starting to come along. We pray these next 3 weeks will go quickly for her with accelerated progress!
2/27/10 - One of Lauren's therapists told Dennis today she has never seen a patient work as hard as Lauren. She wakes up in the morning and throughout the day says she is Extremely Excellent -- no matter how tired she may really be! We have loved this girl from the moment she came into the world -- but where she gets her inner strength comes from someplace deeper than us. I look at her and still don't see the child that once was -- but know she is an amazingly special person and that she is here to do wonderful things. Thank you all for continuing to love and support her along with us!
2/25/10 - Last couple of days have been good ones for the girl. She is tired but continues to push through her therapeutic sessions. Today they used some kind of stimulation glove on her right hand and she was able to start to move her fingers. No matter how tired she is, if they ask her to do 5 more -- she says how about 10. That's my girl -- who never, never gives up. Tomorrow she is half-way through her radiation! Can't wait to have her home again on Sunday!
2/23/10 - Today we had an incredible discovery. After radiation we met with the doctor for our once a week checkup. So far she has had no side effects other than fatigue. Then the they asked if Lauren had any change in her vision and I remembered yesterday when we ate breakfast in the dining room she said what a bright and sunny day it was. I thought she may have just felt the warm sun on her face. So, during the checkup I turned the light on and off and asked her whether she saw light or dark -- and she was correct for the entire sequence!! This is such good news and I'm hoping the beginning of many more good things to come. She did have a good night's sleep last night and was tired when she woke up so we made it pajama day today. Below is a pic of her with her PT from this morning's stretching. (Countdown: 3 weeks 3 days)
2/22/10 - This Monday was much better than last Monday. She had a good night's sleep and woke up around 7:45am and was ready to participate today. She is still tired throughout the day but that is just the radiation taking its toll. She is initiating more conversations and more reflective of who she is. Everyone here loves her and can't believe that she never complains and always ask how others are -- no matter what she is going through. That's our Lauren. She also asked me if we could go out to lunch and thought it would be . She enjoyed being outside so much and kept saying what a beautiful day it was. Now, back to the countdown....3 weeks & 4 days!
2/21/10 - Lauren had a good day yesterday so she was able to come home today. We kept the day pretty low key for her so she would not be wiped out again like she was last week. She made a bunch of calls in the morning, had a friend come over in the afternoon for a short visit and in the evening we had some family over for dinner to help celebrate her dad's birthday. We are starting to think about the month ahead and what we will need to take care of Lauren when she comes home. It's now 4 weeks away!
2/18-19/10 - Now that Lauren's daddy is with her, she seems to be settling down emotionally. Over the last 2 days, she is still tired but participating in her therapies and making progress. Her red cell blood count has gone up a little and there is no more talk of transfusion necessary at this time. In any event, Dennis and I both donated blood to the hospital blood bank. Turns out all of us are A+, so it is good for 30 days should she need it. She did test positive for C-Diff again so we will see how she feels tomorrow before making a decision on whether or not to bring her home on Sunday.
2/17/10 - Today was a tough day for Lauren. She did participate in her morning therapies but in the afternoon she was very fatigued and emotional. She cried every time she got on the phone with me or Dennis -- so much so that Dennis decided to head in this evening instead of going in on Thursday when he usually does. Lauren was so happy when he got there. Radiation is so tough on her -- what a trooper she is. We all cried a lot this day...it's been along hard rough for us all.
2/16/10 - Lauren is having a much better day today than yesterday. She is still tired but not as exhausted as she was yesterday and is participating in her therapies. We found out that Lauren and I both have A+ blood type, so I will be donating blood directly for her should they decide to do a transfusion if her red blood count continues to decrease. I saw her neuro surgeon this morning and he said these things are not normal, but not unexpected either. He feels she is fatigued from the radiation and could be low on hemogloblin because of all the blood tests that have been done throughout her stay. The trip home may also have taken a toll. We'll see how she does during the week and decide if that's too much for her. Back to the countdown, 4 weeks 4 days....
2/15/10 - Today Lauren was very fatigued. It was a light therapeutic day and no radiation because of Presiden'ts day, but she was too tired to participate and slept through most of it. She was also experiencing discomfort when transitioning from laying down to sitting up so she went through another series of tests to try and determine what the cause of the fatigue and the discomfort was. Her red blood count is low and has been declining throughout her hosptial visit which is definitely a contributing factor to the fatigue -- but why is it low is the question. She had a CT scan, chest x-ray and EKG and evertything looked fine. She still has fluid in her plural (lung) area and we noticed she breathes easier when laying on an incline. Her steroid dose was lowered today and a read of her blood pressure was within normal range. Once again, this little girl has a lot going on without a lot of explanation. We are still at Rusk for tonight and will see how the night and morning goes. I took a shot of the chest x-ray which is pretty interesting. You can see her mediport on the right (which is the left side of her chest)and you will notice the opposite side is a little more foggy or blurry indicating the effussion (fluid build up). You can also see the 2 catheters that are draining to 1 side of her lungs. The top shot is of her lying on her side and the 1 below is of her lying on her back.
2/14/10 - Hooray! Lauren finally came home for the 1st time today. She and her daddy pulled in around 8:45am and it is the best Valentine's Day ever! She couldn't wait to say hi to Jasper and call everyone she knows to let them know she is home for the day. Her big goal is to go to Friendly's for dinner before we go back to the hospital. She already has had 2 of her teachers come by, Mrs. Hay and Miss Nancy and daughter Kate. More friends and family will drop by later and pictures to follow.
2/13/10 - Lauren had a pretty good night sleep last night and when you ask her how she is these days, she says she is Extremely Excellent! Today was no different. Dennis says the swelling in her legs is down and her brace is fitting better. We will see how she does today to determine whether or not she can make the trip home for the day tomorrow.
2/12/10 - The 1st week of radiation is now behind Lauren. She was very tired in the morning which may be a result of the radiation she had this week. There was still concern about the all the symptoms she is displaying so a few tests were done in the afternoon that included another Chest X-ray, EKG and quick MRI. All test results indicated everything was OK. Lauren was put back on IV fluid to make up for all she has lost.
2/11/10 - Day 4 done! Dennis met with the radiologist today after her treatment and he said things are going well and Lauren will have her next MRI 1st week in March. We are still watching her other symptoms but our hope is that she will push through them.
My sister called me last night to let us know what a small world it is. Her friends daughter, Katy, is thinking of going into the nursing field, but started having her doubts. She has a cousin who is in the field, so her mom told her to call her. As it turns out, the cousin is an MRI tech at NYUH and told her that nursing is so rewarding especially when you deal with children -- and she went on to tell her about 1 special little girl who recently gave her advice for her boyfriend (that he should wear an apron and give her a bell so whenever she rings it, he comes running and says "yes, my beautiful princess".) Katy knew right away that it was Lauren and told her cousin -- I think I know that girl. So, Lauren continues to inspire people in more ways than we could ever imagine!
2/10/10 - Today marks 3 months of Lauren at the hosptial and her 3rd radiation day is also complete. They got her in early today because of the snow and short staff. Docs are still looking into her myriad of symptoms. She has enlarged ventricles, some additional fluid built up outside her lungs (remember this is where the CSF is draining to), swelling in her legs and feet, high blood pressure (140/100 range) and loose BMs. All this and she continues to participate in her scheduled rehab activites and is feeling pretty good.
On the fundrasier note, if you are planning on contributing a prize for the chinese auction, please have all donations to a drop-off point or directly to Trish Daly by Feb 28th. This way baskets can be assembled and other administrative stuff can be done.
Evening Update: All cultures have come back negative for bacteria. She also had a chest X-ray and full blood work and everything looks fine. She is still on hydro-cortisone which may be contributing to the high-blood pressure. Still not sure about the rest.
2/9/10 - Day 2 of radiation went fine. Lauren is such an amazing trooper and didn't even take 1 break today though she had some X-rays taken before the actual radiation. I had the opportunity to see the MRI scans from last week compared to the previous scans taken just prior to the last resection on 12/31. I took pictures on my blackberry and the pics below represent different slices in the brain, first one starting at the top of her head and the other 2 move lower down. The current scan is on the right. You can see the tumor is significantly smaller at the top and than slowly increases in size as we move down towards the base. The tumor has a white rim which is the solid mass portion and the black inside of that is some kind of liquid debris. The radiation will be targeted at this remaining tumor. Also, notice the big black areas outside of the tumor on the pics on the right. These are her ventricles which are significantly larger than previous. She is not showing any symptoms of shunt problems but will be monitored closely. Over the last few days, she is having swelling of her feet and legs and docs are not quite sure why yet. More tests are being done. She is certianly keeping us and her doctors on our toes. Updates, of course, to follow.
2/8/10 - Lauren had some high blood pressure and GI problems through the night. After breakfast she said she felt naucious. I felt like a little deja vu and got ready for the day to go either way. She wanted to lay down and after a half hour she woke up feeling much better -- whatever she had passed. She went on to participate in the rest of her scheduled therapies, had lunch and then was called down for radition at 2pm. She was very comfortable getting ready and the new mask was soooo much better. I played a guided meditation CD a friend made for her (thank you Judy) and though the procedure was longer today because of X-rays that needed to be taken, she did fine. We had to stop maybe 2 or 3 times to give her a break and take the mask off because she said it was a little warm -- but was never once upset like she was the week before. It helped that we promised her a treat afterwards for being so brave. The snack of choice today was a huge chocolate chip cookie. So, I officially begin the countdown now for her coming home. Six weeks of radiation brings us to March 19th. I pray there is nothing but recovery for her from this point forward and we bring her home the week before her 12th birthday and just in time for the fundraiser! Day 1 is done!!
2/7/10 - Lauren is having great days again and working hard back at Rusk. She and her daddy are going for a walk outside this morning. There will be a changing of the guards this afternoon so her dad can make it to Uncle Jeff's "men only" superbowl party.
Evening Update: Lauren had a lot of visitors for Super Bowl Sunday. Both her Grandma's came, Aunt Colleen, Molly and Bridget. Little Michael was sound asleep in the car so Pop Pop waited with him. Below is a pic of the gang from today.
2/6/10 - Lauren was fitted for a brand new mask yesterday and the radiology team is busy resimulating and replanning the beams for RT with the MRI that was taken this week. Dennis said she did great with the mask fitting procedure. There will be sedatives waiting as a backup for her (and for me I hope). Radiation is now rescheduled for Monday -- which gives us a new finish date of Friday, March 19th. That would make her fundraiser a real homecoming for her. She is not alllowed to come home this weekend because she is on a new course of anti-biotics that are being given every 8 hours. This round is for the bacteria that was found on the shunt valve that came out 2 weeks ago. Lauren's spirits remain high and she is back in the bracelet making business and asked me to bring her in more beads. I know there are some folks waiting for bracelets so it will be a slow go but they will start coming in.
Chris is hanging in there with us and I am so proud of him. He is contributing around the house and is making sure he is staying on top of his school work. I know this has not been easy for him and he realizes the tremendous impact on the family. Thank God for his wonderful friends, our family and all the support he is getting from his teachers and especially his principal, Mr. Matt Clark. It makes a huge difference to have that kind of support and for all of the above we are truly grateful.
2/5/10 - The tumor board has met this morning and recommending to continue with radiation. She will likely be resized for the mask today and begin on Monday.
2/4/2010 - Sorry about not keeping the blog up-to-date this week. I forgot to bring my laptop to the hosptial on Sunday and the last couple of days have been crazy as you'll see from the recap below: Monday - Lauren went for her 1st radiation treatment but I had to stop it during setup. Her mask was too tight because her face was swollen from the steroids she is on from last weeks surgery. She was uncomfortable and became upset. She was scheduled to have the mask adjusted the next morning and try again in the afternoon. Youll see from the pic below how snug the mask needs to fit and what the procedure looks like. Tuesday - Lauren got sick first thing in the morning that was later confirmed as another case of C-Diff. She was throwing up and had fever and didn't eat or drink all day, just slept. This, of course, put radiation on hold again. She went on a new course of anti-biotics and by evening her fever broke and the other symptoms cleared up too. I spoke to her surgeon later that evening and brought up that it has been 5 weeks since her last resection and the tumor so far has been stable. He agreed it would be a good idea to take a MRI with contrast and see exactly where things are possibly revisit the treatment plan with the tumor board to see if radiation is still the right treatment for her at this point in time. (Radiation was only chosen because the tumor grew 3x bigger within 6 weeks after the 1st resection -- orginally she was going to follow surgery with immuno-therapy). Wednesday - Lauren woke up feeling much better. She only had 1 symptom left and was eating and drinking again. The mask readjustment is on hold because she may possibly have a secondary brain infection. When the shunt was revised they cultured the valve. She also had her MRI in the evening and it showed that the tumor is stable. Thursday - All cultures for brain infection came back negative. There was new concern that the left ventricle is still a little enlarged. After speaking with the surgeon, he felt it was fine. Lauren was in good spirits throughout the day and was moved back over to Rusk this evening. The tumor board meets in the morning and we will see which way they recommend proceeding.
1/31/10 - Yesterday Lauren was having head pain so they took a cat scan mid-day and her ventricles looked fine. Today she feels much better and is talking quite a bit. She should be moving back to Rusk tomorrow and still scheduled to start radiation tomorrow as well. Her brother and I will be on our way to visit her shortly. The month of February opens a new chapter to this story beginning her radiation treatments.
People sometimes ask how do we cope -- and the truth is you do whatever needs to be done and somehow you find the strength to do it. For me, my faith and belief that everything happens as it should is what gets me by. Some days I need to take 1 breath at a time...but the important thing is to breathe. I watch Joel Osteen a lot and today his message was about "sensing the good things God has in store for us". He quoted the bible where it said "We should walk by Faith and not by sight. Things may not look good at the moment, but we must know and believe in our heart that God has already aligned the right people and the right places for good things to ocurr. Now, I'm not the most religious person in the world, but I am spirtual and I know God is watching over us and that wherever this road takes us -- it is for the highest and greatest good of everyone. Our faith is strong that God has brought and continues to bring us all the love, support and healing this family needs to continue to thrive!
1/29/10 - I spoke to the girl ealry this morning and she's back and feeling good! Still in a little discomfort from the surgery but her eyes are wide open and she is speaking much better. The docs want to monitor her for a few days to ensure she is stable before moving her back to Rusk and radiation has been rescheduled for Monday.
Lauren got to call her Uncle David to wish him luck and tell her she loves him. He has a big day today and he is also going to quick smoking for her. We love ya Dave!
1/28/10 - Lauren had a pretty uncomfortable night and was still very uncomfortable in this morning. She should have bounced back from surgery by now. It was decided to take anohter fast MRI at 1pm and it showed there was still a problem with the left ventricle. So a surgery was planned for 5pm. (She ate at 11am so they had to wait 6 hours to opearate). The surgery was a 2 hour procedure this time because they decided to replace the shunt valve with a different version. The 1 she had released fluid every hour; the new one releases fluid based on pressure. It's really a surgeon's choice but the one she had is more prone to clogging so therefore it was decided to replace it. They also shortened the catheter (tube) that goes to the ventricle from the valve so it is not so close to the tumor. The tumor moves around and gives off debris and that debris can clog up the catheter. When they removed the tube, they did see much debris. So, we again pray and hope this resolves the problem and she has now been rescheduled for radiation to start on Monday. Below is a pic of Lauren in the recovery room.
A word of thanks -- I got home from work tonight exhausted with worry to find a feast for a king at our doorstop along with 2 huge boxes of "snow made by Mrs. Hay's class" for Lauren. Chris also pointed out that friends in the neighborhood have posted Lauren's fundraiser event on Facebook and Trish has told me requests for tickets and donations have already started to come in. Thanks to everyone for the thoughtfulness and generosity, it overwhelms us. Words can never express how much it means to us!
1/27/10 - Lauren had an early morning MRI and it has been confirmed she has a problem with the left ventricle shunt. She went straight to OR (operating room) after the MRI and should be back in ICU to recover by 10am. She sounds good this morning and amazingly is in good spirits. We met with the radiation oncologist last night and he said it is good she has the problem taken care of with the shunt now so we know everything is working fine before moving ahead with RT (radiation therapy). He said she could still begin today, but depending how she does with recovery, we may wait until tomorrow. I'll post another update later in the day to let you know how the day goes.
Evening update: The surgery this morning went well and Lauren is resting comfortably. She will stay on the 9th floor for another day or so and hopefully will get authorized to go back to rehab on Friday. Radiation has been confirmed to start tomorrow at 3pm to allow her time to recover.
1/26/2010 - Lauren had a significant change in her fatigue level from yesterday morning to the afternoon. She was also extremely exhausted this morning and very groggy which alarmed me. After discussing with her docs, a fast MRI was ordered and it showed a slightly enlarged left ventricle. From there she had a shunt series and shunt-o-gram which are both tests to try and isolate where the problem is with the shunt. It showed that the shunt lines are working fine so she will be monitored throughout the night (probably will move back to Pediatrics) and have another fast MRI in the morning. If the ventricle is enlarged in the morning, it will mean another surgery to revise the shunt. Lauren is also coming off of her steroids so endocronology is being called to determine if that is playing a role. She remains alert and responsive. Bottom line for now is no radiation today. We are meeting with the radiologist this afternoon to see how all this plays into her treatment. On another note, today would have been my dad's 70th birthday. He is gone 7 years now and I know he is watching over Lauren. Happy Birthday Dad!
1/25/2010 - We heard from Infectious Disease tonight and they want Lauren to stay on IV anti-biotics until Feb 4 (3 week duration). They don't think this should prevent or delay her from starting radiation therapy tomorrow but we are waiting for confirmation on that. Lauren got to speak to her teacher Mrs. Hay and all her classmates this afternoon. She was on speaker phone and every member of the class got to say hi. She was glad to hear from them and they laughed a lot on the phone and let her know how much they miss her. Back at rehab, Lauren continues to work hard as you can see from the pics below. She is having a brace made to help prevent her right leg from hyper-extending and this will help protect her leg while she rebuilds her strength.
1/24/2010 - Lauren was able to go outside briefly yesterday and loved how the sun felt on her face! She is doing really well and got to see her dog Jasper today during the swtich off between mom and dad. I should have taken a picture but we didn't. She had lots of other visitors today too including her Pop Pop, Lynn and her daugthers and her brother Chris. We are hoping next Sunday she will make it home!
1/23/2010 - Today marks Lauren's 75th day in the hospital. Even in the hosptial she is such a media magnet. Newsday is doing an article on her which will appear in Sunday's paper in the Kids Notebook section. They interviewed her from the hospital 1 day last week on her art project.
1/22/2010 - Well Lauren won't be coming home for a visit on Sunday. (boo hoo) The infectious disease people came by and they want her to stay on anti-biotics at least through Monday. Apparently, she was never taken off even after they cleared her to start radiation therapy (RT). RT is set to begin on Tuesday afternoon. So, next week we begin the next chapter of this journey. Lauren's spirits remain high.
Chris is doing pretty good too. He is in a jazz band festival tomorrow and has been volutneering to work at a soup kitchen with his friend Austin on Thursday's since I'm at work that day and Dennis is at the hospital. I have to say a special thanks to 3 mom's who have been helping watch Chirs whenever needed, AnnMaire Hassell, Liz Carson and Kristy Korade. They are the mom's of 3 of Chris' best friends and have been terrific.
While I am on the note of thanks I have to take another moment to thank the friends in the community who keep providing us with delicious dinners. I also have to thank our families for their love and support. Dennis' parents have given up their winter refuge in Naples to be here for whatever we need and his mom is now spending 2 nights a week at the hospital now that things have settled down with life threatening emergencies to give me and Dennis time at home with Chris and to tend to other matters. My mom, sisters and brothers have all been helping out assisting us with anything they can -- and it is so very much appreciated.
There is someone who has been working probably full-time on organizing a fundraiser to assist us during this difficult time and deserve a huge thanks. It's my good friend (and family) Trish Daly. Trish is amazing thoughtful and generous person. And so many other friends and family and even people I don't know are stepping up to help her with this effort. It's going to be a really great event and I know Lauren is going to be thrilled.
I can't end this without thanking the healers in Lauren's life both medical and spirtual. The team of doctors and nurses at NYUH are the absolute best and Dr. Allen and Dr. Wisoff are 2 truly dedicated men who have Lauren's back and have never given up on her. Judy and Bill Bezman and other friends from Pathways To Heath, Lynn Hansen from Full Circle Healing and my very best friend Martiza Febo are all wondeful gifted healers and have been instrumental in our walk along this journey.
I don't know where we would be without the wonderful friends and family we have. Thank you all. You are all truly amazing people!
1/21/2010 - Lauren had a good night sleep last night and a great day with her therapists. We heard from the radiologist and he said he needs to revisit the RT planning with the physicists and will begin treatment early next week. He will let us know for sure tomorrow. I am really hoping she will be able to come home on Sunday now that she is back at Rusk. She is saying how much she wants to come home too!
1/20/2010 - Lauren had her MRI around 9am this morning. Results were that the tumor is stable compared to the 1/1/10 scan - which is great news. Tonight we also heard from her oncologist and he said that th tumor board met this morning and agreed if the tumor was stable or increased, they would recommend proceeding with radiation. Infectious disease has also cleared her to stop the anti-biotics. So now, we are waiting to hear from radiation oncology as to when they can begin. The good news is the tumor has not grown and the radiation oncologist is confident there will be little to no negative impact on Lauren. He estimated risk at 2.5%. It was my hope we could have escaped the need for radiation -- but I believe in this team of doctors and theefore believe this is the very right step for her. Now is the time for her to focus on her recovery and hopefully we can have her home in 6 weeks time!
1/19/2010 - Lauren was moved back over to Rusk today at 2pm and everyone was thrilled to see her. She is also scheduled for an MRI tomorrow morning for post-surgery follow-up.
1/18/2010 - This will be an interesting week for Lauren. We are supposed to move to Rusk tomorrow and the tumor board will be discussing how long she needs to stay on the anti-biotics before we can proceed with the next step. Another MRI will be taken at the end of the anti-biotic course so we can check the state of the tumor. If the tumor has grown at all, there will be no question about proceeding with 6 weeks of radiation therapy. If the tumor has remained stable, or better case if it has shrunk, there may be good enough reason to rethink radiation and perhaps go back to the orginal gameplan of immno-therapy or another alternative if available. In any event I asked the doc to tell us the size of the tumor pre and post tumor resections. Prior to the 1st surgery on November 10, the tumor was 140cc and about 50% was removed bringing it down to approx. 70cc. Prior to the 2nd tumor resection, the tumor was approx. 160cc and post-surgery on 12/31 the solid mass was down to 44cc. Just for perspective 30cc is equivilent to 1 oz. So with the 2nd tumor resection, the surgeon was able to get out approx 75% of the mass. We are blessed with the most wonderful doctors here at NYUH! Lauren continues to do well on a daily basis and for the last few days has been taking unassisted steps while holding on to a hand rail and can walk about 15 feet before tiring. She is one resilient and amazing little girl!
1/16/2010 - Lauren is off the decardon today and is now on 10 mg of hydrocortizone. She is still up through the night a lot saying she is hungry, which is a side effect of the decadron. We are hoping that subsides now. We are also still waiting on approval for her to move back to Rusk so she can continue with rehabilitation. Below is a pic of her from yesterday working with her PTs. Regarding the fundraiser, Trish Daly is the organizer of this event and is currently looking for contributions for gift baskets. If you have anything that can be donated, ie. goods, services, tickets, etc., please see the fundraiser page to contact Trish. Thanks to everyone who is already involved!
1/14/2010 - Lauren finally started the anti-biotic to treat her infection today. We haven't heard how long she needs to be on it before they can resume with radiation planning. Lauren remains in great spirits though and is doing well. On the home front, family and friends are planning on Benefit/Fundraiser that will take place on Sunday, March 21st, so save the date for a really fun event. Details on how you can help will be posted under the topic of "Fundraiser". My wish is that Lauren will be home by then and can join us.
1/13/2010 - I haven't written an update in a few days because we have just been waiting for the final pathology report. The final results came in this morning indicating Lauren does have an infection in her brain. We are now waiting for the docs to decide what type of anti-biotics that want to use and for how long. They have estimated it will take at least 3-4 weeks to treat with IV anti-biotics. So, the bottom line is she cannot have radiation during this period of time and we will have to see where we are after the infection has been cleared.
1/10/2010 - Lauren had another great day. She is down to 1mg of decadron 2x a day and everything is still showing negative for bacteria. Hopefully, we will have final results tomorrow and will get a start date for radiation and when she can return to Rusk. Lauren had a visit from her friend Morgan from school. Below is a pic from today:
1/9/2010 - Lauren is doing great agian today and is doing exercises with her daddy. She is standing up on her own for about 10 seconds and doing leg lefts with both legs! So far all the cultures are coming back negative for infection and we should have final reports on Monday. They are doing a very slow taper off of the decadron and should be off that by next week too. Once she is cleared of any infections, she will start radiation. And, hopefully by the end of next week she will move back to Rusk for full-time rehabilitation. She is really making remarkable progress and we are thankful for every day!
We would also like to take this opportunity to thank everyone who has reached out to our family with their thoughts, prayers, healings, gifts, meals, cards, signing her guestbook and other acts of kindness. It is with the support of all you that we are getting through this difficult time and is also giving Lauren the inner strength she needs to rise above all of it. Thank you from the bottom of hearts! <3 <3 <3
1/8/2010 - Lauren has started 1 of the anti-biotics that she needs this afternoon and we are waiting for the final results of the pathology report to determine if she needs another. That may take until next week to here final results. Despite whatever infections she may have, she is thriving. She is hungry all the time and smiling all the time. She is making continued progress. Below is a picture of her walking with the help of her physical therapists earlier today:
1/6/2010 - Lauren was up early this morning and had another great day. Her PT's helped her walked out of her room and half way down the hall. It exhausted her but she did it! We had a very interesting update from her oncologist today. The pathology report came back from the tumor resection. Good news is that the tumor is still being classified as a JPA (Junior Polycytic Astrocytoma) or slow growing tumor but bad news is it is showing a large number of white blood cells -- indicating infection. The infection could be what ended up killing off a lot of the tumor creating necrosis (dead or dying tumor) and inflamation (making it grow the way it did). But it's not the way you want to attack a tumor and causes additional risk to Lauren if left untreated. The tumor board met this morning and discussed these results and decided we should off on radiation therapy for now. They are treating her with anti-biotics and want to ensure there is no infection before beginning radiation. We are taking things 1 step at a time and the docs will re-visit the treatment plan and next steps after infection has been ruled out. This certainly could explain why the tumor had such aggressive growth in a short period of time. They doctors remain amazed at how well Lauren is doing despite all of these events. With her art teacher, Lauren made the project below that depicts what the letters in her name mean...
1/5/2010 - Lauren is having another great day. There is more of a personality and humor coming back each passing day. Today we are going for some simulation for the radiation therapy and she also needs to have a mask made. This should be interesting.
Evening update: The mask procedure was very interesting. The plastic looks like what they wrap over a box of fruit -- like a diamond mesh. They lay her on a bed with a plastic head rest. Then they lay a soft foam under her head that forms to her head and place the plastic mesh over her face. She can breathe fine through it and the plastic is soft when they place on her and then hardens. The plastic mesh goes down the side of her face and then screws into the table/bed she lays on. This will keep her head still while she has radiation. I did some hypno-therapy (guided relaxation) with her to keep her relaxed and calm and I only had to step out of the room for a few minutes while they did a CT scan. She is still scheduled to start radiation on Monday. She had a nice evening too. Kim D'Arcy came and brought her a vanilla shake -- which she loved. The doc from rehab also stopped by late and said she looks wonderful and he will be starting the procedure to get her back to Rusk. Everyone continues to be amazed by her progress and we look forward to this continuing!
1/4/2010 - Lauren conitnues to have really good days. She is eating and talking all the time now. Today she stayed up until 3pm befor taking a nap! She has been working with a PT again and sat up today for an hour and took a ride in the wheelchair. We met with the radiologist today and it looks like she will start next Monday as much planning needs to be done. She will actually only get radiation for 10 minutes a day Mon-Fri for about 6 weeks. There are really good statistics that there will be minimal side effects both short and long-term. Her tumor is a little over 2 inches around (it was 3 inches prior to surgery) and the hope is it will shrink it down further.
Evening Update: Lauren has had such an amazing turn around after this last surgery. The neuro surgeon stopped in tonight to show me the scans and informed me he was able to remove 100cc of tumor which is about 3 1/2 oz. There is still a chunk of tumor that is towards the left of the midline and that is what the radiation will target. The doc who is administering her radiation was the head radioligist at Sloan Kettering and now sits on the tumor board with Dr. Allen. He has great experience and we are lucky to have him as a part of the exceptional team focusing on Lauren's treatment and recovery plan. We are filled with gratitude for all the healers assisting her.
1/2/2010 - Lauren had a really good day today. She ate and spoke to her daddy and had visits from her Uncle Frank, Aunt Loretta and her cousins Eamon and Sean. We meet with the radio-thearpist on Monday. Below is a picture of Lauren after she ate lunch today. She looks terrific!
1/1/2010 - Happy New Year! It was for us as we rang in the new year with our little girl, eyes wide open and eating jello and cookies. She looked better last night than she has the whole time she has been in the hospital, including after her first surgery. She was up hours after her sugery, talking and smiling. She stayed up through mid-night and we could not have asked for a better New's Year Eve. Chris was so happy to see his sister up and talking and smiling. It was a wonderful night for everyone. She didn't sleep much through the rest of the night and ate a big breakfast in the morning. She slept a lot through today. She did have a MRI and the surgeon said everything looks really good. The gameplan is that we will move forward with radiation therapy planning and start her as soon as possible. She needs to begin treatment right away so she doesn't loose any ground she has gained from this major decompression. There are some risks but there is just as much to gain. She is also still a candidate for immunotherpay after the 6 weeks of radiation. So at this point she will be in the hospital at least another 6-8 weeks. She can receive radiation at the same time she is in rehab and will get back to rehab as soon as she is strong enough. Lastly, on this first day of the New Year of 2010, I'd like to share with you the lyrics to a song I have always loved by Martina McBride that reminds me of Lauren every time I hear it. I hope you have the chance to listen to this beautiful song and think of Lauren too. Happy & Healthy New Year!
In my daughter's eyes, I am a hero. I am strong and wise, And I know no fear. But the truth is plain to see: She was sent to rescue me, I see who I wanna be, in my daughter's eyes.
In my daughter's eyes, everyone is equal, Darkness turns to light, And the world is at peace. This miracle God gave to me, Gives me strength when I am weak. I find reason to believe, in my daughter's eyes.
An'd when she wraps her hand around my finger, Oh, it puts a smile in my heart. Everything becomes a little clearer. I realise what life is all about. It's hangin' on when your heart has had enough; It's givin' more when you feel like givin' up. I've seen the light: it's in my daughter's eyes.
In my daughter's eyes, I can see the future. A reflection of who I am, And what will be. An'd though she'll grow an', some day, leave: Maybe raise a family, When I'm gone, I hope you'll see, How happy she made me, For I'll be there, in my daughter's eyes.
12/31/2009 - Lauren's surgery was finished around noon today and the surgeon said it went well! He got out about 70% of the solid mass -- but realize the tumor had grown more than double from its original size. The cyst they thought was fluid or debris looked like necrosis (dying or dead tumor) to the surgeon. They will send off what they got out to be anlayzed and we will know for sure next week. Neurology is advising not to delay treatment of the tumor. We will be meeting with the oncology team again once they have the results of the testing to determine what is the best next steps. It's 5:30pm and Lauren's eyes are wide open and she is responding well for the last few hours. The family is all here at the hosptial along with her Mammie and Pop Pop. Her Grandma and other Aunt's and Uncle's will be coming tomorrow to help ring in the New Year!
12/30/2009 - Lauren ate and drank today! She had breakfast and lunch and was a little more alert throughout the day. Her Aunt Cathy and Uncle Bryan to be came in to visit and she was smiles galore! Her surgery is scheduled for 7:30am.
12/29/2009 - Last night around 9:30pm Lauren became alert and we played a hand game called bubble gum and sang some Xmas songs -- she sang along to some of the words which is great! I crawled into bed with her and we called her dad with the exciting news and she called him a stinkbug which made her smile. It's funny how the little things suddenly become immense. Today she ate a jello and a chocolate chip cookie. She smiled at some jokes but other than that is still pretty wiped out. Tomorrow her dad and brother arrive and we will all be together through New Years. We ask all of you for your continued thoughts and prayers for a successful surgery without any secondary complications this time around.
12/28/2009 - We met with the oncology and neurology team today and all parties agreed the best option is to do another surgery and remove as much of the tumor and syst matter as possible. Her surgery is scheduled for New Year's Eve, first case. They will do another analysis of the tumor tissue to see if her low-grade tumor has somehow transformed to high-grade to determine appropriate follow-up care which may include radiation therapy. Lauren continues to rest comfortably and after seeing the MRI scan it is understandable why she is so lethargic and not eating or drinking. She is communicating with us and smiling occassionally especially when her dad tells her a joke. Keep the prayers going -- she is staying strong and we all believe in her full recovery.
12/27/2009 - Lauren is a little more respondent today. Still not eating or drinking. MRI scheduled around noon.
12/26/2009 - Moved back to the pediatric ward at 7pm. Lauren not rousing in afternoon after nap. Had CT scan and chest X-ray....shunts look fine but tumor is presenting slightly larger. Docs increased decadron dose again.
12/25/2009 - Merry Christmas! Christopher and I went to surprise Dennis and Lauren on the night before Xmas eve so we could spend most of the day together. We were able to get a room at the Inn (the Ronald McDonald House) and so it was off to the city we went. We received a special gift Xmas Eve too -- Lauren was moved back to Rusk, the rehab center. All the doctors, and we, BELIEVE she is strong enough now to start her recovery. We know it will be a long process but she is making little strides each day. So we count each and every one of our blessings on this day and hope you take the time to do the same. I was able to send out Xmas cards and a note this year, but I did not have everyone's address and some came back returned. So, I'd like to share with you here the message and picture from our trip to Hawaii in April of this year that I sent out. Thank you again to everyone who has reached out and touched our family in so many ways!
As you all know, this holiday season is not filled with the normal hustle and bustle of the season. Instead of shopping for presents, we are taking shifts at the hospital with Lauren, meeting with doctors and therapists throughout the day. Chris is also being shuffled between family and friends.
The thing that has kept us most grounded is our LOVE, HOPE, and FAITH.
Lauren is a gift, as both of our and all children are, and has already taught us so much throughout her life. She has always been filled with unconditional love and joy. She believes every girl is a princess and every guy is a King Commander Master Cool Dude! She spreads her love every day through the bracelets she makes and through her artwork (there is a picture of it on her website: http://www.laurensvision.com under BLOG). The art project is called “Reflections of Me” and it truly is a reflection of Lauren. It is also now on display at the Stonybrook Museum until 12/27.
Love has always been key for us. In the Christian Bible there is a passage – 1st Corinthians 13:13 "But now abide faith, hope, love, these three; but the greatest of these is love."
I remember explaining to Chris when Lauren was just starting to lose her vision many years ago, that the one thing that will never change is how much we love each other – and that love is what will get us through. As I explained this to him, I confirmed it in myself.
Hope is positive energy that pulls us through the tough times (especially when the doctors can’t explain what is going on and how things will be). I love the story of Pandora’s Box which is about a curious child opening up the box and letting out woes onto the world. The one thing that was left in the box that called to her and offered comfort was HOPE. Hope gives us strength, courage, and healing. It gives us stamina to face what we many times think we cannot face. Sometimes HOPE is all we have and it can be such a comfort. Our hope is high that Lauren will make a full recovery!
Faith - I cannot tell you where we would be without our FAITH. Lauren has led us each on a spiritual path, one that we would not necessarily have followed without this interesting journey. My faith has led me to a broader understanding of energy and continued consciousness and one that allows us to honor the choices of the soul, whatever that may be. (I didn’t say we had to like it – just honor it).
In any event, we want to thank you for keeping us in your thoughts and prayers as well as all the other acts of kindness you have showed us. It is so deeply appreciated and we are filled with gratitude for the blessing of such wonderful family and friends. May you count your many blessings this holiday season and remember to keep FAITH, HOPE and LOVE in your life and allow it to serve you as it has and continues to serve us. We wish you a Merry Christmas and the Happiest New Year! May it bring us all everything we could hope for and more. Namaste!
Much Love, Dennis, Lisa, Christopher & Lauren
12/22/2009 - It looks like Lauren will be spending Christmas at the hospital. It would be exhausting for her to come home and she needs all her strength to get ready for the intensity of rehab. She will probably stay on the hosptial side of the house for another couple of days to be evaluated and process paperwork -- then back to Rusk for recovery. Santa is making plenty of stops at the hosptial. We'd like to thank Santa and all his many helpers who have been sending gifts to both Lauren and Chris. Our family greatly appreciates it! Below is a pic of Lauren with Santa from today:
12/21/2009 - Today marks 1 week since Lauren's last surgery and she continues to do well. She will be finished with her decadron taper (today she is down to 1 mg 2x a day) on Thursday and soon after can start her immunotherapy. She was up most of the morning and then slept for the afternoon. The docs are still talking about whether a trip home makes sense or not, but it seems like it might not be in the cards. Dennis is still with Lauren since we weren't sure if and when she would come home for the holidays. As of now, our backup plan is that I'll be with Chris through Xmas morning and then he and I will go into the city to have some family time and Dennis will come home with Chris. We have been using Skype to see and talk to each other and it is the next best thing to being there. We will Skype Christmas morning too so 1 way or the other we will be together.
Today Lauren stood up while supported for about a minute and even made it to the child life center to make her cousin Jessica a card for her birthday which is tomorrow. Jessie and her family a planning a trip in to see Lauren and the tree at Rockerfella center tomorrow afternoon. Below you can see Lauren and her dad in the activity room.
12/20/2009 - So far so good this morning. Her docs stopped in and agree she looks really good and think she is getting ready to move out of the pediatric ward. She will continue to be monitoed over the next day or 2 to see if she is strong enough to make a trip home or move to Rusk. Santa and all his helpers keep visiting the hosptial and below is a picture from today. You can see for yourself how much better she looks!
Chris and I are snowed in today and playing monopoly (he kicked my butt last night) and catching up on T.V. Chris just completed writing his 3rd fiction story about a boy named James Thompson. It's an action adventure series and he hopes to 1 day have them published. He also is in the process of writing a song on the piano. We are all looking forward to possibly spending Christmas at home with Lauren!
12/19/2009 - Lauren had another incrementally better day. She is up for "pockets" of time from 1 to 1 1/2 hours and then sleeps for 2 or 3. She is eating and drinking and more conversational when she is up. We and the docs are still up in the air about whether or not she can come home for the holidays. We see how see does over the next few days. If she continues to get stronger and can take a few steps, we will then consider having her come home -- otherwise it's NYUH for Christmas!
Special Thanks to the "Blue Team" teachers at North Country Road School for the beautiful "Believe" bracelet in Braille and a shout out to all of Lauren's classmates for the gifts and cards. You guys are all awesome and Lauren is going to be thrilled to see you all again!! Can't stop without saying thanks again to the Girl Scouts of Miller Place and their families for the non-stop dinners that keep coming our way.
12/18/2009 - Lauren had another good day today. She ate and drank but is drinking better with a thickner added to her drinks. She is still very groggy and tired but having more wakeful periods. There is talk of her coming home early next week, if she continues to make strides, until she regains full alertness and more strenggth. The reason for the discussion is because the rehab doctor wants her to be able to fully participate in acute therapy and at this point he thinks a visit home over the holidays might do her a world of good. We were having to wake her up for theapy and she would sleep in between -- so she really does need more rest from all the surgeries. In any event, we will not bring her home unless we are confident she is through the woods medically and we can arrange everything she needs for us to take care of her at home.
Reflections on Chris: When I got home tonight, some things came to my attention that made me realize Chris is being effected by all this more than I thought. I guess I really haven't noticed because he is such a great kid and I have been so focused on Lauren with all the surgeries and recovery. He has written before about how even though he understands all his sister is going through, it is still hard to understand and handle all the attention that she gets. He knows that people don't really realize or mean to ignore him but he can't help but feel - well less important. Lately, he has asked me if there is any mail for him each day as he see's his sister getting cards, presents, calls and visits on a regular basis. Many continue to ask what they can do for the family...so at this time I would ask if anyone feels compelled to write to Christopher and send him a note or card letting him know he is being thought of -- I think that would go a long way with him. Our home address is 23 Lower Rocky Point Rd., Miller Place, NY 11764. Thanks again for all your love and support!
12/17/2009 - I have some good early morning news today. Lauren woke up around 7am and was alert and talking! She said she was hungry and had about 4 spoonfuls of chocolate pudding....Hooray! How wonderful the small things are. She is back to resting but this is really good. Her neuro-surgeon came in and said every time the ventricle enlarges it pushes and moves things in the brain and seems to take her that much more to recover. She has begun her decadron (anti-inflammatory) taper and will getting 4mg every 8 hours. Remember, once she is off the decadron she can start her immunotherapy. Her daddy is on his way this morning and bringing our good friend Maritza! Don't forget to mail your STARs to Lauren to let your light shine on her while she works hard in rehab....and thanks again for all the love and support! Late Night Update: Dennis had me SKYPE him when I got home to show me Lauren was woofing down a slice of pizza for dinner and drinking juice from a straw. She also had a little lunch earlier too. This is such progress after night eating since Sunday afternoon. We can only hope that things will get better and better now!
12/16/2009 - Lauren has opened her eyes today and is accepting a few spoonfuls of jello at a time. I'll be feeding that to her throughout today. Her OT came in this morning and helped Lauren sit up briefly. She looks so much better today! If she starts to eat, we can probably move back to Rusk. I'll post another update later today. Evening update: Lauren was up until about 1pm and then was in and out of sleep. She only ate about 1 cup of jello and 2 oz of jello. She had a lot of visits today. Her Mammie and Aunt Collen were the first to come in the morning. Then her Pop Pop stopped by and her Grandma Linda came in and spent the evening. There was a surprise visit from Dennis' Aunt Margaret. All brought lots of love and prayers. Lauren and I both received massages today from a Swedish woman named Gunilla who is sponsored by a program called "Making Headway". It was soooo wonderful! Her neuro-surgeon and rehab docs both stopped in and are happy she is making progress. They both agree she needs a couple more days to come around.
12/15/2009 - Lauren needed some pain medication throughout the night and was given 1 mg of morphine at midnight and 6am. She has been mostly resting this morning with no eating or drinking but did open her eyes a few times and communicating a little. Her neuro-surgeons stopped in and said she looks good and to give her some more time. She has shown us that she is a slow recoverer and has been through a lot. I will try to feed her a little something at lunch and if she doesn't start eating by tomorrow they want to give her a gastric tube. Hopefully that won't be necessary.
12/14/2009 - Today has been the scariest day thus far. Neuro-surgery came in this morning around 6:45am and said they were not inclined to do another shunt revision because the ventricle was only slightly enlarged. Over the next couple of hours, Lauren proceeded to become flush, had a slight fever and her heartrate began to rise and exceeded 200. Her right side contracted and at times the left did too. They believe she was having seizures. They gave her a full surgery dose of decradron, Tylonel followed by Adavan to assist her. A CT scan was ordered and a shunt series to recheck what was happening. We went for the CT scan first and as we were waiting for the shunt series they called to say the right ventricle had enlarged 3x the size from yesterday. The shunt series was no longer necessary and she needed to get to surgery as soon as possible. Another shunt tap was performed to remove more fluid while the OR was being scheduled. It is now 12:30 and we just got word to prepare her for the OR. Her color and vitals are all good now and she is resting comfortably. Evening Update: Lauren was in surgery by 1 and finished by 2pm. All went well and they moved her shunt tubes to release in the lung area. Her surgeon feels her stomach wall may have built up a sensitivity to the tubes and treating them as foreign object and causing the blockages in her tubes. She has been sleeping all afternoon and evening and in a little discomfort. She was given a little morphine to take the edge off after surgery. Since she is not very responsive yet, the surgeons ordered another CT scan and she also had a chest X-ray. Everything looked good and now we will wait and see what tomorrow brings. We hope and pray this will do it for her and allow her to work on getting her strength back. Dennis is returning home to be with Chris after a long and scary day.
12/13/2009 - So far all the tests from yesterday are coming back negative, which is good. Lauren did have a MRI today and it showed her right ventricle is slightly enlarged again which indicates a block. They are going to do a shunt tap tonight to remove some of the fluid and she will be scheduled for surgery in the morning to revise it. She has been on a subtle decline the last few days eating less, not really drinking and speaking very little. We hope this is the final mountain to climb so Lauren can work on getting her strength back.
There was an annual family Cummins Christmas party yesterday and we received the STARS and gifts sent from family and friends. Thank you all -- they are certainly brightening her room! Hope to see you all there next year! Below is Lauren under all her stars. And below that is a picture of her and brother Chris.
12/12/2009 - Lauren has been participating in all of her therapetic activities these last 2 days but is still in a semi-conscious state. Her eyes are closed most of the time though she responds to what is asked of her. Today they took some blood samples to do some cultures, took a chest X-ray to ensure no pneumonia was brewing and will run some other tests to rule out any other reasons for fatigue. There was talk of another MRI but nothing has been scheduled yet. We are not going to bring her home tomorrow because she is still too weak. We are hoping that by next week she is strong enough to make a visit home. She has been receiving many wonderful cards and her dad has made her a "CARDEN" wall which is a Garden made out of the cards she has received.
12/10/2009 - Well today marks 1 month of being at NYUH. I didn't have time to update yesterday because we were back at Rusk and many differnt therapists and doctors were in and out all day re-evaluating her. She had her 3rd lethargic day and it was decided to re-scan her to see if there was an underlying problem contributing to her sleepiness. An MRI was ordered around 3pm and we got breif results last night saying the fluid looked reduced. This morning we got a confirmation email from her oncologist saying he re-viewed her scan with the neuro-surgeon and they both agree that the ventricles and cyst have reduced in size along with the swelling. They have told us that she will have good and bad days and it may come is "waves". Dennis is now with Lauren and he said she woke at 7:30am and is participating in all of her scheduled activities. They will do a slow taper of her anti-inflammatory medication and will start the immunotherapy protocol when she is off.
12/8/2009 - Lauren is more tired today than yesterday. She is eating and drinking very little again but is alert and talking during her wakeful periods. Her doc stopped by and said he isn't worried and said that she will continue to have up and down days with her strength after all she has been through. It's 2:30pm and we are also still waiting on authorization to move to Rusk. I will send another update tonight to let you know where she is at. Update - we finally moved to Rusk at 6pm - tomorrow she starts her therapy!
Christopher has a concert tonight at school that I will unfortunately be missing. He is in good spirits though and told me not to worry about it. He is such a good kid! He has a great idea which is to put together a book about Lauren called "Point of View". He loves to write and thought it would be nice if family and friends could write something about how Lauren has effected their life. I just added a new TOPIC to her website called "POINT OF VIEW". There you can tell us how Lauren' has touched you and let us know if it is ok to include it in her manuscript to be....and let us know your POINT OF VIEW.
12/7/2009 - Lauren had a restful night and is having a much better day today. She is eating a little at every meal and is much more talkative and alert today than yesterday. The doc's say she may just have overexerted herself and it caught up with her yesterday. They are telling us now she may have a couple of really good days, followed by a day to re-coperate. It's just going to be a slow go because of all the surgeries. She got out of bed and sat in a chair today for about 20 minutes with the assistance of her PT. They feel she is ready to go back to Rusk and we can move as soon as the paperwork/insurance is processed -- so it will be either later today or tomorrow. Many are asking what they can do or get for Lauren. She has a cloud wallpaper that I hung in room at Rusk and you can send her a STAR with a message on it, so we can hang it her room. Scroll down to find the address to RUSK. I have also included a picture of her room so you can see what I'm talking about.
12/6/2009 - Well it looks like Lauren may have C-Diff again. This is a baceteria that she is susceptible to because she is on a high-dose of steroids which kills off good bacteria in her intestinal track and causes you to basically to poop a lot. Luckily, it can be treated with anti-biotics but takes a good 7-10 days and it is wiping her out again. She has been very lethargic today. Her neuro-surgeon stopped in and said he is not worried because her vitals are all good. So, it just means more time in the hosptial before she can go back to Rusk. Dennis and I swtiched places at the hospital this afternoon and Chris came with me to see his sister. Dennis and Chris are going to stop at the tree at Rockerfella Center and see the windows on there way home.
12/5/2009 - Lauren continues to show signs of improvement! She ate a nice big breakfast and things are now moving in and out of her body -- if you know what I mean :) Her neuro-surgeon came in to see her this morning and he believes the tumor is not growing at an accelerated rate, just continuing at the rate it was. It just has more space now to move about and it is easier to see its progression. What we believed all along is that the partial resection will relieve some of the pressure in her brain as well as by her time to have other treatments. Time will continue to tell and we are thankful she is in the best possible place she can be. As soon as she comes off the steroids, which is sometime next week, she will start the immuno-therapy. The immuno-therapy is a series of injections, like a vaccination, that will be given over a period of time. The intent is for her body to build up white blood cells that will target the tumor. This is a brand new treatment called a "study" that she will be participating in -- and we are excited and hopeful.
12/4/2009 - Lauren has been more alert and talkative over the last 2 days and has started eating again. She is still sleeping a lot and is up for the longest period of time in the morning. So far the testing is showing that there is no infection but she will stay on a course of anti-biotics until all tests come back negative. The bottom line as to what has happened is that Lauren's tumor for some reason has expanded in size and creating more pressure in the brain, especially her brain stem, which explains why she is so tired. It is actually bigger than it was prior to surgery. The doc's are trying to figure out what has caused this. There are big gaps of space inside the tumor, so this is not a solid mass, but it is either filled with infection or some kind of debris or fluid. The aspiration showed what looked like "old blood" with brown and yellow coloring to it. Lauren has a tumor that is classified as a JPA and is considered a slow-growing tumor and could not possibly triple in size in such a short time unless there was some sort of spontenous change of the tumor cells. The team is, therefore, looking at the pathology of the current tumor cells and comparing them to a biopsy that was taken 2 years ago to compare growth rate. All of this is being done to determine what has caused this and how to treat her. Please continue to keep her in your thoughts and prayers.
12/2/2009 - Lauren had an MRI thi morning as well as some blood taken for cultures to determine if she has an infection. Lauren rested comfortably most of the day but was not her usual self. She was very flushed and did not eat or drink again though her vital signs were good. After all day deliberation by her doctor team, it was decided to do an aspiration (remove some of the fluid) from the suspect area. There are 2 other possbilities as well. The sample will be cultured and we will have more information tomorrow and even more information in the next several days.
12/1/2009 - Lauren had her 6th surgery this morning at 7:30am to re-internalize her shunt tubes. She was a trooper as usual. She had some pain due to the surgery later in the evening and again at night and was given some medicine that allowed her to rest comfortably through the night. The doctors brought a new concern to the table after viewing her CT scan that would require further investigation from both the oncology and neurology teams.
11/30/2009 - Lauren is back in NYUH resting comfortably after having another surgery last night. She was having head pain over the weekend and it was determined through a CT scan that her right shunt was being blocked in the abdomen area. Her shunts have been externalized and when she is back to herself they will do another surgery to internalize them again. Right now she is receiving anti-biotics for C-Diff, a intestinal bacteria caused by the steriods she is on, and a UTI that was confirmed today. She is pretty wiped out and only drinking a little -- but certainly on the road to mends.
Previous Summary: Lauren was having problems balance problems and other increasing difficulties so it was decided she should have a tumor debulking to reduce the size of her tumor. The surgery was performed on November 10, 2009 and took about 6 hours. The doc was very happy that he was able to remove approximately 50% of a solid mass that was well defined. He told us this equated to about 2 1/2 oz. to put it into perspective. This accounts for about 30% of the overall mass. Due to secondary problems with her shunts becoming blocked from debris she has so far required 4 additional surgeries. She also needs several weeks of rehabiliation which she started to receive at the Rusk Instititue. It is in the same complex as NYUH and she will return there as soon as her surgeries are complete.
Lauren has a cloud wallpaper in her room that has been decorated with a rainbow and STARs with notes on them from those who have visited. If you would like to send her a STAR for her board to shine your light on her, you can send them to: Lauren Cummins c/o Rusk Institute for Rehabilitative Medicine 400 East 34th St. / 5 South Rm 512E New York, NY 10016
Picturesof her progress are being posted under the PHOTO ALBUM. Thanks to everyone for all their thoughts and prayers!
Sidenote: Below is an art project that Lauren made during school this year and is currently on display at the Stonybrook Musuem through Christmas. There is also an article about her and the artwork in this week's North Shore Sun. You can view a glimpse of the article online at: http://www2.timesreview.com/SUN/education/. The artwork is entitled "Reflections of Me" and it is so Lauren!
11/27/2009 - Sentiments from Lauren's Dad on Thanksgiving Eve....read below
Have you heard the expression “the grass is always greener on the other side”
Too often, no matter what a person may, or may not have, they often look to what someone else has with a sense of wishfulness, regret or envy?
Don’t get me wrong, I think it is critical to have goals and to strive for growth and development. As we say at the Millionaire Mind Intensive: “You are either growing or You are dying”.
Its OK to want more but the I believe the key to happiness is to “Love and be grateful for what you have now.”
Be grateful for the things you have. Be grateful for where you live. Be grateful for the people in your life. Be grateful for yourself, for who you are right now.
Easier said than done sometimes is'nt’t it?
If you are not sure, try living for a week in a noisy uncomfortable hospital with limited amounts of poor quality sleep and worse food, sitting at the bed side of your only daughter who has just undergone here 6th brain surgery and is lying in a semicomatose state with a breathing tube attached to a ventilator, 5 separate IV lines delivering medications, and a catheter to catch her urine.
Try doing that and still be grateful for all you have.
If you can, then you have begun to learn to live in the moment and to be thankful for what you have right now.
That is lesson that I have come to understand thanks to Lauren.
My wife Lisa and I had been in the hospital with Lauren for almost the entire week. Lisa had gone uptown to the Ronald MacDonald house to get a solid nights sleep. It was the 6th morning at the hospital. I had just spent another long restless night with Lauren. (Hospitals, in case you didn’t know, are not exactly the best places to get rest and be comfortable.)
I had gone down the hall to the family shower area and had forgotten my shave gear. On my way back to the room I noticed one of the floor nurses stopping the man with the meal cart and asking him to wait to the side so that they could bring a patient down the hall. I had never seen them do that before and I thought it was a little unusual since the halls were definitely wide enough for them to pass.
I collected my razor and shave cream and was just about head back to the shower when a serious looking nurse stopped me at the door and politely asked me to wait inside while they brought a patient down the hall. There was something strained about her demeanor.
I thought it was an odd request. My mind began to invent reasons for it. Perhaps it was a psychotic patient and they feared for our safety, Perhaps they were bleeding and they were worried about infection.
In the end, I “theorized” that the child must be female and that because of a cultural or a religious belief she could not be in the same area as a man. In any event, I obediently stayed inside and waited by the door.
As the child was wheeled past our door I realized that I had guessed wrong. I immediately understood why they wanted the halls cleared.
Judging by the size, I guessed that the child was about the same age as Lauren.
It was hard to tell for sure because he or she was completely covered with a white sheet.
The child had passed away earlier that morning.
In that moment I said a prayer for the soul of that child and for their family...And... I thanked God for the 6 surgeries, the ventilator tube, the 5 IV lines, the catheter, the sleepless nights, the crappy food, and my daughter.
I wanted to share this story with you because I wanted you know that I am also greatful for the amazing family and friends that I have in my life.
Thank you all for for your love, support, encouragement, well wishes, and prayers. You have made a very difficult time for my family and myself a lot easier to bear.