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Welcome - This web site updates Maya's progress. Please write us a note in our guestbook. Thank you!
On Sep 13, chest x-ray's showed large amounts of fluid in her chest cavity and the doctor decided to perform a lung tap: insert a tube into the chest cavity to release fluid. Nearly 400 ml was removed and Maya's breathing and heart rate improved dramatically. We were relieved and Maya got some good rest...for 4 hours. She then became uncomfortable and her breathing became more labored. The doctor decided it was time to take over the breathing for her via a tube and ventilator. Right before she was sedated and the tube was inserted, Maya asked for Jaden. We were quite happy to hear her alert response and Sam asked her who Jaden was. When she didn't respond Sam asked if Jaden was her sister. Maya spoke right up and said, "No. He is my brother. He is naughty some times and you and mommy put him in time out." We were relieved to know our Maya was still alert and mentally active.
Maya's heart rate was averaging 180 beats per minute since being admitted. After the lung tap the heart rate went down to 140 but went back up. After the ventilator her heart rate went down to 150. Meanwhile specialist after specialist visited and assessed Maya and ran off to check their literature and consult with other experts. We were quite impressed with the responsiveness, extremely high level of competence, professionalism, sacrifice and ability to explain in detail their thoughts. The team narrowed on several suspects, every single doctor contributed to connecting the dots and astonishingly made the diagnosis in a matter of hours. The Oncologist confirmed the diagnosis through analysis of a bone marrow biopsy. We are very lucky the diagnosis was made so quickly.
Unfortunately the diagnosis is a rare form of a blood disease, called hemophagocytic lymphohistiocytosis, or HLH for short. This disease involves the histiocyte cells eating up normal blood cells which are then stored in the liver and spleen. This results in an enlarged liver & spleen which then compromises breathing by pushing on the lungs. The disease is so rare that there is not even a body of data on which a prognosis (survival odds) can be based. The treatment is a form of chemotherapy and was started the same day of the diagnosis (Sep 14). Maya's heart rate went lower to 140 as she became more comfortable and on the 2nd day got all the way down to 105. It is currently in the low 90's.
We have a long, bumpy, uncertain road ahead of us. Maya has already responded well to the treatment but it is very early. Maya is still on the ventilator and has about a thousand tubes stuck in her. We are now preparing to move her off the ventilator but need her to "wake up" from the sedation and paralytics that she has been under in order to proceed.
We are DEEPLY grateful to all of our friends and family who have made incredible sacrifices and steady support through this initial phase. We very much look forward to updating you on Maya's progress through this web site. Our thumbs are about to fall off from all the texting! Thank you again and God bless.
Apr 1, 2013 12:57am
What a Year and 3 months!
Wow, we really let this update go out too long. Lots to tell you about. Here we go!
In June, we had an amazing trip to Florida thanks to the wonderful Make-a-Wish foundation and our fantastic sponsor, Cincinnati-based company, The Hillman Group. Excitement built for about eight months before the trip, heightened by the Make-a-Wish volunteers making periodic visits to our house to discuss the trip. They must have thrown two or three pre-trip parties! No question, Maya and Jaden were very much looking forward to this magical trip.
The Make-a-Wish team provided a wonderful trip. We were picked up in a stretch limo, flown to Orlando, greeted by a family from the Hillman Group and another Make-a-Wish volunteer. The Hillman Group demonstrated over and over their sincere commitment to the Make-a-Wish program, our family and the love which makes it all possible.
The resort, Give Kids the World, was a fantastic place. The resort had a fantasy land theme with characters and elaborate building designs. There was an ice cream shop that opened at 7:30 in the morning and closed at 9:00 at night! There was a very nice pool with crazy water features. We were so impressed by the Give Kids the World organization, people running the place and the hundreds of volunteers that make it all possible.
We visited most of Disney World: Magic Kingdom, Animal Kingdom and Epcott. We scheduled a princess event of course: lunch with the princesses. Sam’s younger brother, Mike, and his family were able to schedule a trip to Disney World at the same time. It was great fun to share with Mike, Shelly, Will and Elizabeth; the kids love each other and had fun exploring together. Shelly made bright yellow t-shirts for all of us, that read “Team Chamberlin” on them. They made it very easy to keep track of our little travelers. Make-a-Wish not only provided passes to Disney but also provided “go to the front of the line” buttons which made us feel like royalty!
Make-a-Wish provided tickets to Sea World and Universal parks as well. We had a very entertaining day at Sea World. The animals were unbelievable and they loved to splash the crowd. They had a massive three-story play area/jungle gym, with nets for floors, in which the kids really enjoyed playing. Feeding the dolphins was great too!
We went to Universal for a day and rode on a couple of Cat in the Hat themed rides and took pictures with Sponge Bob and friends. The two highlights at Universal were a show with Barney and a Curious George water park. The Barney show was great – they had a Give The Kids the World connection: at the end of the show, they had us stay back for some time with Barney and one other Make-a-Wish family. It was really cool, as the kids really love that character. We stumbled upon the Curious George Water park with no swimming suits, but what do you know? There is a swimming suit vendor right there to help us out. It was quite a place with big water guns and massive buckets of water high up in the air that would slowly fill up and when the bell rang, dump about a hundred gallons of water on the kids below. It was a lot of fun and Maya and Jaden had a blast!
We made a drive down to Sarasota Springs to visit another HLH family, The Marshes, who have been a big support to us and do a lot for bone marrow and blood donation and HLH awareness. Marla Grant, another big supporter who is also dedicated to bone marrow and blood donation awareness in memory of her daughter, joined us for dinner and catching up. Maya heard a lot about Hannah Marsh during her treatment as she was and continues to be such an inspiration to us and many others. Jaden and Bridget had a lot of fun together as well.
The kids did great on the trip and were showered with gifts at Give Kids the World. When we returned we were taken home in another stretch limo. As we pulled into the neighborhood it was a nice sunny afternoon so everyone was outside playing. We got the superstar treatment as the limo pulled into the driveway and the kids swarmed around to see who was inside!
Before the trip to Disney World, Maya had been off IVIG for a couple of months and was doing well. (IVIG is a blood product packed with extra antibodies that help kids with diminished immune systems. It takes over 1000 blood donors to make one unit of IVIG, so please donate!) Since things were going well Maya’s re-immunization effort was allowed to begin. The marrow transplant wiped out her previous immunizations so she had to start from scratch. She did well with the first three rounds of vaccination shots. This is quite a step towards normalcy that we are very happy Maya has achieved!
With the need for IV medications going away, the risk of having a central line in her body was outweighing the benefits, so it was decided the central line (port) and the G-tube could be removed. We scheduled the procedure for soon after the trip to Disney World. Maya was a little scared but excited about the new activities she would be able to do, namely riding her bike without training wheels!
This was a big moment, as the central line was a big symbol of Maya’s long journey, from near death to recovery. The central line was the device that made it possible to deliver the multitudes of noxious chemicals that halted HLH from killing Maya, wiped out her defective marrow, and wiped out the first donated marrow after the first transplant didn’t work out. The central line allowed the donors’ life-saving marrow and hundreds of medications to be delivered while Maya recovered in and out of the hospital. For most of the central line’s existence, it stuck outside of Maya’s body and had to be covered with a big, very sticky dressing in the middle of her chest, to keep bacteria from infecting her fragile body. That dressing had to be changed weekly, by pulling it off her chest and re-applying a new one (PAINFUL). Now, that darn port was getting pulled out….hopefully forever. It signaled that Maya was done with this horrible episode of her very young life. And for Mina and Sam it meant their baby girl is going to make it.
Maya had been asking us for a while to remove the training wheels from her bike, and we told her we would after the port was removed. It didn’t take long after the surgery for her to remind us it was time for the training wheels to come off. Sam held on to the back of Maya’s bike and they made several tries at it. Maya took a break then the next day was practicing again, showing us yet again her persistence and patience with herself. Within 2 days she was riding back and forth, down the block…and smiling from ear to ear.
Jaden caught the fever too, but only after he learned he would be getting his friend and neighbor Jeremy’s old bike. Jaden showed he had been paying attention by taking off on his first try! Both kids on their bikes…it sure is fun to watch.
Mina went back to finish her fellowship in nephrology at the University of Cincinnati in July of 2012. The hospital stands right across from the Cincinnati Children’s. In fact she can the see the bone marrow transplant floor from where she works. Hours are super long, sometimes 15 hours a day, but she is very excited to finally go back and finish what she had started 3 years ago.
Sam is working from home mostly and makes trips occasionally in the region to visit project sites and prospective customers. He has taken over the morning duties with the kids and gets to have lunch with Jaden nearly every day. Sam is in line to run another marathon this year if all goes to plan.
A few weeks ago Maya had a follow up immune function study to check the progress of her recovery, and we are happy to report that everything is looking good!! She has proceeded to the next immunization and after the next one she will be caught up to her peers! We are so blessed and happy about how far Maya has come and we would not have done it without all your support. We have not done a good job keeping you up to date and we regret that. Please know we have felt your good thoughts and prayers and have been having a great time. We could not be happier and more thankful for all the prayers, well wishes, gifts, donations and kind gestures from so many people, not to mention the life-giving donations of Maya’s marrow and blood donors. Thank you and God Bless!
Ps. I just noticed we can have 100 photos in the gallery so please check out the new pictures I uploaded, of the amazing progress Maya has made!
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