We went for more labwork and his counts have dropped to very low levels again. We stopped administering G-csf on Sunday and in 5 days time his numbers have dropped dramatically. He needed another blood transfusion today and will most likely need platelets on Tues. The doctors have decided to continue G-csf again until our next appointment and then based on those numbers will need to determine if we will need a bone marrow biopsy to see what is truly going on in there. They all seem a bit concerned that his body is not able to sustain production of his immune system but at the same time keep encouraging us that his counts are not at 0, close to it, and that there is some production- but who knows if it is due to all the blood and platelets that he gets on a weekly basis now? It is difficult to stay optimistic especially since Connor is only the 2nd patient undergoing RIC at Children's whose bmt failed so they just don't have a lot of data for us to review. Can you believe he is only the 2nd child??? SO FRUSTRATING!!! Pleaes don't get me wrong, we accept what has happened, what choice do we have afterall, and we generally have very good days BUT I do have these moments where I just look to the universe and say UGHHHHH!!!
What is really scary is the decision that we have to make about a second transplant. I ran into a mother of a 12 year old son who is suffering from acute GVHD on his skin. I have read about that being a possibility but until you talk to someone you don't really understand what GVHD of the skin means...she described it as the entire skin suffered from burns and her son is in excruciating pain and so much of his skin peels off his body that she has to clean the floor of his room at least 3 times a day. He underwent full myloblative bmt- the preconditioning treatment that Connor will have to endure if or when he has to do this again. How do we make this choice and when? We are still seeking guidance on all of this and trying to review all of our bmt research again but for now we still need to find another donor! Please encourage everyone to register- most of them will never be called to donate and a lucky few may have the opportunity to save a life!
Connor is still doing well, we are keeping occupied by re-decorating his room and making it everything Star Wars! And he finally got a big boy desk and takes so much pride in keeping it organized and lining things up. I actually got him to let go of a few of his toys from when he was 2 or 3 so I am thrilled! We are slowly getting into some sort of schedule but some days he is just really tired.
Thank you all for your prayers for our family and for Andrew's family. God has heard your prayers and our friend Nancy is out of intensive care, she still has a long road ahead of her but she is off of most of her machines and we are so grateful!
Have a great weekend!
6 comments:
Oh steph, that skin thing is horrible and terrifying. I don't even know what to say. I'm sure you see doing this, but what about going to Cincinnati? At least it's been too hot to even want to play with anyone....we're in Milwaukee all day for pre op but we'll be around all weekend. Not that that means anything. Thank goodness for Nanny's improvement!
Love,
Teri
We'll pray for wisdom and guidance for the doctors and give praise for the good news about Nanny. You and Steve continue to be an unbelievable inspiration to all of us who look up to you as you lovingly parent and protect Connor. Step by step and day by day, may your family feel surrounded by the love of family and friends. Love, Karie
Sending you prayers of guidance and that God will light the path for next steps for you both and for Connor. He is such a brave kid! We think of you guys everyday and pray for another donor, Connor's immune system, and your overall journey.
How do you deal with it when your child is only the 2nd failure, it doesn't make sense and it doesn't seem fair. I'm amazed by your family's strength and faith, I don't think I could be that unfailingly strong. You have so many people praying for you and wishing blessings on you and Connor has his mother's loving heart which will always be there to sustain him. Nancy's remarkable progress is a blessing and thank you for asking for prayers for her when Connor needs them all. Take care of yourself, too. Linda
Gosh...I am frustrated for you all, I can't imagine what you are feeling. I just pray and hope those numbers go up--soar!
Love the StarWars room and the big boy desk. :)
Sorry to hear about Andrew. Addison still talks about her Papa but Aidan never mentions him. They comprehend death so differently. Love the Star Wars theme! I'm sure that's keeping you busy both physically and mentally. Heard it is scorching there. Stay cool.
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