Hope for Jocelyns BoneMarrowTranspl
My name is Kristen McGee. I have a precious baby girl, Jocelyn, who will be undergoing a Bone Marrow Transplant in June. My husbnad and I are usually not ones to ask for help, however, there comes a time when help is a necessity. Heres our story...
Almost four years ago on June 29, 2011 at 10:36pm, I gave birth to my second beauitful baby girl, Jocelyn. I had a few complications during pregnancy, causing the doctors to induce labor by 3 weeks. Nevertheless, she came in this world wide eyed, beautful, and healthy, or so we thought. At 2 months old, Jocelyn was sent to the emergency due to a high fever and what looked like a spider bite on her right fore arm. We were linked up with a surgeon, Dr. Corr, who then did and I&D surgery on her arm. SHe was hospitalized for a week on iv meds. Tests came back that she contracted staph, serratia, and cellulitis in her arm. Once she was discharged from the hospital, she was placed on oral antibiotics for 10 days. On the 12th day, 2 days after finishing the antibiotics, the place on her arm had returned, and had grown twice as large than what it was. (About the size of a quarter). We then repeated every step we took the first go round; the surgery, the iv meds and then the oral meds. A few weeks after being discharged and finishing the oral meds, yet again the infections came back, only this time even larger than before (the size of a half dollar), and had moved to another place as well.
By this time, my husband and I are both frustrated, angry, and dont know what to think. By the grace of God, we were introduced to an infectious disease doctor, Dr Bhat at our church. Due to our piling expenses, Dr Bhat came to our house one sunday afternoon and spent 2 hours going over what he thought could be the issue, calling a colleague for help as well. We came down to one answer: CGD. Dr Bhat ordered some rare tissue and blood stains to be taken during her next and what ended up being her final surgery. When we received the results, they were breath taking. She had Chronic Granulamatous Disease. The test read that 89% of her nutriphill cells lay dormant, and will never work. The remaining 11% showed minimum-zero activity against fighting off infection. CGD makes her extremely suseptible to infections, causing her to live a life with quite a few retrictions.
After learning of her disease, we were then referred to her immunologist, Dr Kobrynski. The first 2 years of her life, she suffered through staph, serratia, salmonella, cellulitis, coxsackie virus, pneumonia, and numerous other infections. She currently takes Bactrim, an antibacterial medication, Sporanox, an antifungal medication, and Actimmune, and injection to help boost what little immune system she does have on a daily basis.
Despite all odds brought against her, Jocelyn has pulled through flawlessly. She is now up for the biggest challenge of her life. The ONLY cure for CGD is a Bone Marrow Transplant. It has its own risks involved, and it is extremely rare to find an 8 of 8 match. GOD, showing us His undying love, blessed us with a daughter, Julliann, 11 months before having Jocelyn. To our surprise, we were told, after multiple blood work taken, Julliann and Jocelyn are a 100% match, having all 8 proteins match! Julliann will heal her sister, but it does not come without a price.
The time line for this next chapter is utterly intimidating. Jocelyn will endure 6-10 days of chemotherapy at Egleston. On Day 0, (transplant day after chemo), Julliann will be brought to the hospital where her sister has been. SHe will be placed under anesthesia, and donate her Bone Marrow. It will then be sent to the labs for manipulation, and into Jocelyns rooms by the afternoon. She will be in the hospital for 8-10 weeks, in the event that she does not develop graft vr host disease. From there, she will be placed in a ronald mcdonal house. The first 1-2 months, her and i will see her BMT physician, Dr Stenger, 3x a week. If she is improving and Julliann cells are coming through, she will then be dropped down to 2x a week visits for roughly 1-2 months. Eventually she will make it down to once a week for 1-2 months. This entire process will last anywhere from 6-12 months. During this time, I will be staying with my daughter, Jocelyn, at the hospital and Ronald McDonld House. My husband Mike, and oldest daughter Julliann, will be nearly 4 hours away, back at home. My husband will be making numerous trips throughout the month, bringing foods, water, etc, due to the need to keep Jocelyn indoors. Travel, medical, originals bill... they will all continue coming. We are not ones to ask for help, but this will be the most stressful, mentally, physically, and emotionally, situation my family has ever endured. We appreciate whatever help you can give including your PRAYERS!!!! We are God-fearing Christians, and know He has His hands on our sweet baby.
Thank you so much for taking the time to read our story. We appreciate everyone and everything. Again, you cannot pray enough! God Bless you all!
Sincerely with Love,
The McGee Family
