Wednesday, December 18, 2013

What now? (Week # 40)

I am extremely disappointed to share that Brayden had an unexpected reaction halfway through his Carboplatin infusion yesterday. It began with him vomiting, and as I cleaned him up he began becoming very restless. As a nurse, I began quickly assessing him, and I noted that his ENTIRE body was bright red, and that his heart was beating too fast for me to count. I took Brayden to the door of our clinic room and called for our nurse. She stopped the infusion immediately and the interventions began to stabilize Brayden. In some ways it was as if I was in an alternate universe while I was sitting there holding Brayden as he shook. The room quickly filled with clinic staff (including our attending physician) and at that moment I truly understood how my patients must feel when they are rapid responded. I was overwhelmed and pretty scared as I watched his little heart beat nearly 200 beats per minute and his oxygen saturations drop into the 80's on the monitor. He was quickly placed on oxygen and given more IV Benadryl. His poor body was scorching hot and he was very restless. When his oxygen levels didn't come up with the supplementary oxygen he was then given a dose of IV steroids. His lips were swollen and he was making a snoring sound with each breath, although they said his lungs sounded okay. Sometime during this interaction I saw a nurse bring the epi pen and I prayed desperately for the steroids to work. As it turned out the steroids did finally work, and Brayden was monitored in clinic for a while. Ultimately it was decided he would need to be admitted because it was unclear how he would do after the steroids wore off.
We had a rough night during our stay. Brayden vomited twice before the nurse would get him IV drugs, but we finally settled down around three and went to sleep. They woke him at four for vitals, but he went back to sleep pretty quickly and we slept until 7. He ate a good breakfast, got his monthly IV antibiotic and we were home in time for lunch.
Dr G came by to see us this morning while we were still inpatient. Brayden was supposed to receive 12 doses of Carboplatin, and yesterdays dose was #8. Typically the reaction occurs in the first three doses so it is unclear why it took him so long to have this reaction. If he were to received this drug again, the reaction would likely be worse, possibly full blown anaphylaxis. With that being said, Brayden will no longer be able to receive the #1 treatment regimen for his kind of tumor. It has been determined that there is no need for Brayden to have labs drawn next week since he only received 1/2 of the dose. His labs will be checked on New Years Eve, and he will not have to go back (with the exception of a hearing test) until his scheduled MRI on the 13th. At that point we will have some serious decisions to make...... 
If the tumor is stable at that time then we will do nothing. No more chemo, no more labs, and Brayden will have home health to come to our house and flush his port monthly. Brayden would only need to be seen in the oncology clinic every three months following each MRI. While that does sound nice, that thought makes me INCREDIBLY uneasy.
If the tumor is shows progression we will have some tough decisions to make. Dr G told me about a couple of our options, one of those being weekly Vinblastine chemo in the clinic. As I read about it I don't love it, but it sounds better than the second option. The second option would be oral chemo. This chemo would be administered at home by myself and my family. Dr G mentioned that kids hate the way it tastes, and it's in liquid form so it must be mixed with something with a very strong taste. I don't know if I can administer chemo to Brayden, and to be completely honest, I don't really want to. There is also the issue about safe handling of chemo at home. It is recommended that anyone that is pregnant or are breastfeeding should avoid direct contact with, or the handling of, these drugs. What if I get pregnant (crazy thought I know), but I am not getting any younger. The thought of having drugs in our house that require gloves and all kinds of special rules makes me uneasy. Yes, it would be convenient, but I am not sure if I can do that to Brayden.
At this point I am grateful that he is okay and that we are home. I am hopeful that we can have an uneventful holiday and make some quality memories with Brayden. I keep pushing the thoughts aside about next Christmas, but given all of these new developments I am having a tough time. I guess what I am saying is I am not sure how much more I can take and keep it together.


  1. Prayers going up on you and your family's behalf. Hang on to Jesus tight!!

  2. You don't know me, but I am friends with your sister, Jennifer. She was there for us when our son was killed at Goodfellow. My reason for writing is not about me, but to let you know that I've known about Brayden's health concerns since March and I pray for him and your family. You are a very strong are a mother. You can and will be strong and keep it together. Why? You are mom..Brayden's mom. You will be strong for him. Praying right now. I know that sounds empty when you are hurting so much and you see your little man so sick, but just know that people you don't even know and will probably never meet have had their hearts moved and lives changed by Brayden's story and the story of your strength. Hang in there mama.