Thursday, June 14, 2012
June 13th- Game Plan
We are living out our very worst nightmare where all of our efforts are all for nothing. Instead, our sweet baby had to endure 10 days of chemotherapy followed by 27 days of horrible tasting medicines, unspeakable pain, mouth sores, hemerroids, and terrible homesickness for what? I am still in SHOCK and just really don't understand how this happens? We have researched BMTs for 4 years now and according to the doctors here they have only had 1 bmt failure in 3 years and they tweaked the chemo formula and have not had failure since then??? And on national average, the chances of failure is around 5%? It seems like nothing has worked in our favor for the past several years and now we will always have this dark cloud hanging over our heads until who knows when? I just have a lot of bitterness and grief and worry - the 'normal' life that we were looking forward to is not to be. It breaks my heart to have to tell Connor that this did not work - how does a 7 year old who has summoned all the courage and bravery that he has to take his meds, to follow doctors orders process that it didn't work? I just don't know how he will handle this news and I don't even know when to or how to break it to him. I just feel terrible that we exposed him to more risk of secondary cancers, that his own immune system may now be more compromised than before, and who knows what it did to his mental, emotional and spiritual state? We are not even back to square one, it feels as if we have taken a major step backwards and our options are more limited. The tears just flow randomly and I can honestly say that I have never been this down in my entire life. AND how do we make a decision to have another BMT? and if so where? it is just too much... Well, we met with the doctors this evening and they had no explanation as to why his did not engraft, they just said that it happens sometimes. SO we asked if he could get a boost from the donor but they said that this is not an option, the chances of it helping is very low and there are risks b/c he will need more chemo. There is nothing left for us to do but wait for his own cells to grow back and build up enough of an immune system for him to be able to go home. Our only consolation is that his immune system seems to be coming back whereas in some cases the body's immune system does not come back and they are left with no choice but to get another bone marrow transplant. They are stopping all the immunosuppressant drugs (to prevent GVHD) and our one hope for a miracle is that there may still be a very small percentage of donor cells in his bone marrow and that they may be able to grow a little bit, they told us not to expect this to happen. They are also stopping the GCSF so we will see how much his counts go down and they will go down. We are not sure when we will be able to get home - we are just stuck here waiting and knowing that this has failed, it really is so hard to be patient and to endure all of this. Connor is in good spirits and he is off of all pain meds. He is in a very good mood and coming back to his old self and taking the meds has become a little easier for him as well. I know that so many of you have been anxious all day so I wanted to share the same info that we received today. A friend told me that in times like these, we can turn away from God due to all the troubles or we can choose God. In the past week, I have really really tried hard to choose God. I know that there is a divine plan that we are not aware of and I also know how fortunate we are despite all of this but at this moment I am just really angry, bitter, sad and confused and it really is so difficult to choose God. Please continue all efforts to register more asians to the bone marrow registry. Besides a miracle in the next month or so, Connor will most likely need another bone marrow transplant if we can find a perfect match sooner rather than later. The median age of survival for his disease is 25 years old, the clock is ticking and because of this bmt failure, it is more critical than ever to find a perfect match. Good night.