The big words of the day racing through my mind are Cidofovir and adeno...One is a treatment for the other...but the treatment is not a "clean" one. It is potentially damaging to the kidneys...and it already has in Elijah. But, it is the only current treatment available. And so we move forward, three times a week, administering a medication that has the potential of helping and hurting.
The medication isn't an easy one to administer. It only takes one hour to give the expensive medication intravenously, but the regime to help protect the kidneys is a process that takes 9 hours to complete. Premeds, flushes, and more flushes..then two doses of another medication to again help protect the kidneys.
Elijah does not have a temp and he has remained well hydrated. If either of those things change, we will be back in the hospital immediately. Most kids would already have been admitted given the intense regimen of treatment right now. I feel like I can handle it from here. We have made it clear that if at anytime, the doctor feels he can be better treated inpatient, that we would not hesitate to bring him in, of course. But, we have medical equipment most families don't have...an oximeter, a feed tube to keep feedings going, and medical training that not all families come into transplant with.
We have stepped up our time in the clinic..his kidney function, electrolytes, and blood counts need to be monitored much more frequently now. He gets infusions to boost his immune system weekly as well as transfusions when needed.
Elijah still looks good...you would not immediately see that he is not doing well. But, we who know him well, can see it. He doesn't slow down his activity level, but we know he is breathing harder and faster. He doesn't tell us that he is uncomfortable, but we see it even though others may miss it. His joints hurt..which happens often for him when his blood counts fluctuate. He is a sick little guy..but just has it has been before transplant, besides the bald head and blue mask, no one would no it from the outside.
My hearts breaks for another family on the BMT unit. Their son, Tyler, is fighting for his life and his body is not handling the stress of all of the treatment that he has endured. He is only 2 years old and has only been off of chemo for 4 months of his life. His body is weak and his kidneys, liver, heart and lungs have all been damaged. Please pray for him and his family. I have not met this family but I have been praying for them since they arrived on the unit when Elijah was still an inpatient. They have three young children...I can not even imagine what stresses they have been under through this time. You can read about his journey on his caring bridge site here. They could use your financial help as well...if you would like to give, their email address is listed on their caringbridge site and you can donate through paypal.
We have been separated as a family for 4 months now. It has been stressful to say the least...But, It has been an indescribable blessing to be able to spend such precious time with Elijah...the more time I spend with him, the more I see God working in him and through him. God is here...and we feel His touch in ways that I could have never imagined before going through such an immense struggle,
There is no possible outcome of this transplant experience that we fear. There is no victory or challenge that we are not convinced has come from God. Elijah could be healed with no signs of long term damage to his body. He could end up on dialysis. He could die. That is the reality of living with a life threatening illness. But, as we pray for healing and protection from the damaging effects of the treatment, we also pray that we will rejoice in knowing that God is in control of every detail of Elijah's life...and we will walk each step of the journey knowing without a doubt that God will never leave us or forsake us...he has shown us his faithfulness and mercy and he will not stop pouring out his love upon each one of us. Again I can say..it is well with my soul.