We'll last night after I posted on the blog, I thought I was going to get a quick 5 hours of sleep before waking to take C down for his biopsy. Just after midnight, the nurse came and said that Cs hemoglobin was 7.4 and he has to have blood in order to have the biopsy. So the lab began prepping blood to give him. Some of you may remember that C has been very reactive since his BMT and that in addition to pre-medicating him, they wash the blood 3 times to get out all of the extra junk that may cause the red rashes all over his body. Well, at about 4am, the lab called and said that the bag of blood broke on the 3rd wash and that they had to start over. The entire process takes over 3 hours. Thus began a tense conversation between our doctors, the OR doctors and the anesthesiologist. As a mother, I appreciate ALL the watch dogs. From each person's perspective there was a reason to either wait or move forward with the procedure. In the end, the blood came mid morning and C had almost received the entire dose when OR came to get him. He was being worked into the schedule so we had to take what they could give us. All of this madness equalled very little sleep for mommy. Charlie, however, has been sleeping great. He was less nauseous today, but has been red and itchy due to his transfusion. We are hoping the blood gives him more energy and that he wakes up a new man tomorrow.

A fist bump is Charlie's way of saying "hello" or "I love you." He often just says my name and reaches out with his fist. It's super cute. So---fist bumps to all of you for taking this journey with us. 

A fist bump is Charlie's way of saying "hello" or "I love you." He often just says my name and reaches out with his fist. It's super cute. So---fist bumps to all of you for taking this journey with us. 

At about 7pm, I went down to the parent lounge to eat my dinner. We are not aloud to eat in Cs room. The nurse came to tell me that the attending doctor was in Cs room and wanted to talk to me. I knew this was odd bc we never see the doctor outside of morning rounds and his shift ends at 7pm. Immediately, I knew that he was coming with biopsy results. I came in and we shot the breeze for a while. I could tell he was nervous. Finally, he said that the initial report came back showing that there were NO cells in Cs bone marrow. They will still test the bone piece itself over the weekend but at this point, they are fairly certain the graft has failed. The good news is, I received another unannounced visitor earlier in the day. 

Kristina is a search coordinator. She works with matched donors to get them scheduled for blood tests and ultimately a bone marrow donation. She came with the news that our 31-year-old male was contacted on Wednesday and that yesterday he went in for a counseling appointment where it was explained to him Cs needs for a second transplant. After that appoint, the donor signed a consent and committed to donate on September 25th. He will undergo a physical on Monday and a few other tests to confirm that he is fit to donate. Kristina doesn't anticipate any concerns and we'll know by the end of the week if everything is a "go." Once we hear this, Charlie will start taking a less intense chemo called Fludarabine. He will get it for 5 days and then late on September 25th, once the cells arrive from our generous donor, C will get a second transplant.

Although this is not the path we would have preferred to take, we have no regrets. We actually decided on the front end of all this that we won't play the "what if we would have" game. The truth is, while this was a surprise and disappointment to us, God isn't surprised at all. He knew Charlie long before we did. He knew about all this and He loves my son more than I ever could. (Which is hard to imagine, but true.) He's not surprised and He's not scared. He is Alpha and Omega. He knows how this will end. My hope is that it ends with the complete healing of Charlie's body.

But you know what? I've been thinking a lot about what it looks like for my son's life to be saved. And at the end of the day, we are only saving his earthly body. Charlie is going to grow up to be a boy who will then someday be a man. And along the way, I will still be praying for God to save him. Charlie needs salvation from his sin. While he is only two-years-old, the bible is very clear that we are all sinners. You see, I can't save Charlie from his sin. I can't sign a consent form or give him a "Jesus transplant." That is all up to Charlie himself and it will be my prayer for him everyday that he chooses salvation in Jesus. 

Todays Prayer Request:

  • pray that God would protect C was viruses and bacteria as he awaits his next transplant. We don't need any complications!!
  • pray that God would use Cs story to change peoples lives. If you are reading this and you are wondering what this "salvation" stuff is I'm talking about. I'd love to share that with you personally. Click here to hear more about Jesus. 

 

 

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