Maya Chamberlin's Journal
Written 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!
2 years out
Written May 13, 2012 10:11pm
HAPPY MOTHER’S DAY!
Today is indeed a very blessed and special mother’s day for us. Exactly two years ago Maya received her second bone marrow transplant, this one from Rose-Anne. Thank God she was a suitable match and a willing donor. We are so blessed that both of Maya’s marrow donors helped save her life through their gracious bone marrow donations, and for the hard-working and caring people at Cincinnati Childrens Hospital who meticulously managed Maya’s transplant journey. Many unknown blood donors are to thank as well, since Maya received numerous infusions of blood, platelets and Immunoglobulin, a blood product culled from many hundreds of blood donations.
In our church today, we jumped when they asked for anyone seeking prayers for birthdays and anniversaries. Maya’s special anniversary is May 11th, the date of the second transplant that miraculously began producing healthy blood cells and started Maya on her recovery. Throughout the service we saw special affirmations of our joy, and the last song of the service summed it up: “God has done marvelous things.” You can say that again!
We thank all of Maya’s donors with all of our hearts, and rejoice in their hugely generous gifts. Life is precious. Life is quite precious and we hope you do not take anything for granted. We pray for all our friends and the children and families currently battling Histio and BMT, or grieving their losses. We will never forget the beautiful children who earned their angel wings and their strong families. Thank you all for your unyielding support.
Many of you are wondering about how Mina performed in the marathon. Mina is so disappointed to report that she was not able to run the marathon, thanks to the worst headache of her life that took over much of our vacation.
We arrived in Los Angeles Tuesday afternoon, just in time to say good-bye to Mina’s aunt before she joined her grandparents in heaven. She struggled with one complication after another post open heart surgery. We are taking comfort in the fact that she is not in pain anymore. The next day Mina’s headache set in and it escalated to a 10+ on the scale of 1-10 by the morning. The headache was accompanied with multiple episodes of vomiting. A really bad headache combined with vomiting needs prompt medical attention so off to ER we went. Mina knew that a CT scan of brain and a lumbar puncture were imminent. She received some heavy duty narcotics and nausea medications that improved the headache a bit, but still persisted.
Once the results of the lumbar puncture came back normal we were discharged home, with no vomiting but with a persistent throbbing headache. A few hours later it came back, this time much worse than before. Mina couldn’t hold her head upright let alone run a marathon. The positional nature of the headache led to the diagnosis of spinal headache, caused by spinal fluid leakage, a complication of lumbar puncture. The treatment involved an epidural blood patch, basically injecting blood in the epidural space and blocking the leak.Thankfully, the patch stopped the leak and the headache improved. We were able to board the plane (with a ton of meds) and made it back to Cincinnati. Mina is now seeing a headache specialist who has started her on some new medications. We are so relieved that the cause of the severe headache was nothing major.
Mina is making a promise to her supporters that as soon as she is fully recovered, she will be mapping out a 26.2 miles course and running it in honor of the many patients waiting for their life saving transplant.
Thank you again for all your prayers and support!
Written Apr 28, 2012 1:59pm
On May 6th, around the time of Maya’s second BMT anniversary (May 11th) I will be running the Orange County Marathon in California in honor of those patients that are waiting for a bone marrow transplant but sadly are still waiting for their life-saving match. The National Marrow Donor Registry (NMDP) estimates there are currently 10,000 patients waiting for transplant, but only half will find a match. This is a problem that has a very simple solution. All we need is more people to join the registry. The process of joining the registry is simple too. All that is needed are cells from the inside of one’s mouth for HLA typing, that’s it…it’s done. This person is ready to save a life.
While the process for the person joining the registry is simple, funding for HLA typing remains a challenge. Each sample collected costs NMDP $100 to process. My goal is to raise enough funds to process 100 samples. As you know Maya is alive today because of the 2 donors that made the decision to join the registry few years ago. It is because of their selfless gift that today Maya gets to be a daughter, granddaughter, sister, friend, cousin, first grader! There are so many more kids that are waiting for their chance to do just that, but they need our help. I am humbly requesting you to please support my mission by donating whatever amount you are able at http://tinyurl.com/OC-Marrow-thon/. Just copy and paste the link to your web browser and click on “Make a Gift”. Any amount you donate will bring me one step closer towards achieving my goal of adding potential donors to the registry.
I started my training in January during the cold winter months; the temperature often dropped down to the 20’s. It is amazing how much one can accomplish when the inspiration is the many faces that are fighting a fierce battle to stay alive, a battle that Maya fought for almost 3 years. She was only able to persevere because of her donors, without them she had no chance. I am not aspiring to qualify for the Boston marathon or set any personal records. All I am hoping to do is finish the 26.2 miles and I am asking you to help me reach my goal to add 100 new members to the registry.
Maya is loving school! She has adjusted really well to the school routine. We give thanks to her donors every day for giving Maya a chance to enjoy school, something she had longed for, for the past 3 years. There are other children waiting to do just that. Please take a moment to donate to a cause that is so very dear to our hearts.
We again ask for your continued prayers for healing of our Maya. I am also asking prayers for my aunt (mom’s sister) who had an open heart surgery and is faced with many complications, and for our fellow BMT friends: Zach, Jaelynn, Mitchell and all the kids who are bravely fighting to beat histio/cancer. Thank you for your support! Happy Spring!