We had another appointment today. We have some news. Everything is not in the clear yet, but NMDP gave us proposed dates for the transplant. As of now, Timothy will be admitted on January 29th. He will then undergo intense chemotherapy treatment. And on February 8th, he will receive his new marrow.
His pre-transplant work-up started today. He had a chest x-ray and EKG done today. This Friday will be GFR (this measures kidney function) and it will be an all day event with IV line and all. Next Monday will be the dreaded NPO day :(. He will be sedated for Echocardiogram (a sonogram of the heart). It is scheduled for 2:20 pm and nothing to eat after 7 am… So here’s my plan: wake Timothy up at 6:30 am and feed him a LARGE breakfast, otherwise, I don’t think he will survive. Another appointment on Wed. and PICC placement on Friday of next week. And that’s it. Sunday following he will be admitted.
I feel overwhelmed once again. I was getting used to just hanging out in Houston without much worry :). I pray every night that Timothy’s BMT will go smoothly without ANY complications. But I do get scared and doubts flood my mind and heart once again. God’s in control, right? Right. I must believe. I have too. I will keep updating. Thank you for your prayers and support.
Wow! This is good (yes scary, but good) news! Things are moving forward toward his cure once again! Just take it one step at a time. It's all we can do. The whole process is too overwhelming. Sending my love and prayers.ReplyDelete
I just stumbled upon your blog today as I was looking for links with Dr Holland whome my husband was referred to. I am very touched by your dedication to your son's care... I too know the struggles that you face daily. My husband was diagnosed with CGD only 5 years ago when he was 27 years old... He is 32 years old now. We come from Trinidad which is a small island in the caribbean so hence we did not have the experts at home to diagnose him as a child... But since he was 18months old he has been in and out of the hospital with pneumonia's, swollen lymph nodes and skin abscesses.ReplyDelete
In 2010 he got an MRSA which almost took his life... Since then he has not been able to breathe without the use of an oxygen machine... He is doing a lot better now and we are actually in the US getting him evaluated for a lung transplant and we return to Trinidad on Sunday..
I am glad that you are so educated about this illness... you can prevent what happened to my husband from happening to your son... You have to do what you have to do, the bone marrow transplant is risky but for a young child the pros outweigh the cons so do it!!
I dont know you personally but I will pray that the powerful Hand of God touches your son in a mighty way, in the way he has touched my husband and speared his life for 32 years with this deadly illness... God is powerful and he is a miracle working God... We just have to trust that he works out the best for your wonderful son...
Keep my husband and myself on pray as well. Were we come from we dont have insurance so we have to get $400 000 in cash to pay for his procedure... So we have to go back home and try to fund raise.. Hence we need as much pray as possible... But we firmly believe that all things are possible with God..
I will remember to pray for him from Jan 29th and beyond... Keep us posted!! Blessing on your life and that of your family!
Please read my comment below :)
Thank you for your comment and your prayers. We are very grateful and are in need of much prayer. I, too, will be praying for you and your husband. I sincerely hope that you can raise the needed money to get his lung transplant. NIH is a great place for CGD patients and from my email contact with Dr. Holland, he has been wonderful. Please keep me posted with your husband's progress as well. I will continue to update as we proceed with the transplant. It is a very scary thing and I have and had my doubts, but you are right, I think it's the right thing to do... I am so glad to meet you online :)))
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