This past week has involved a lot of R&R for Adam, but also he has had to redo some of the diagnostic tests that were done the first week of his hospital stay at another hospital. Unfortunately, the tumor sample, and the imaging scans were not adequate, so he had a repeat MIBG scan (full body, to determine location of neuroblastoma cells), and his primary tumor biopsy is scheduled for tomorrow, Monday, at 9:30 AM. The biopsy can be performed by a surgeon, involving either laproscopic (camera) surgery, or if the liver was being biopsied, the surgeon could perform it by eyesight. Our doctor’s preference (and ours) was to use interventional radiology to perform the biopsy instead. This involves using imaging guidance to insert a hollow needle into the primary tumor, and then using this “tunnel” to go in and grab samples of the tumor. This is the less invasive option, with lower bleeding risk, however, there is a small possibility that the tissue could be necrotic (dead) and not provide an adequate sample. This possibility was weighed against the invasiveness of a surgical biopsy, and we’ve decided to go the interventional radiology route. We have already consulted with the doctor who will be performing the procedure, so assuming Adam is healthy, it should all be done by noon time tomorrow.
Regarding Adam’s health, he appears to be improving daily. He seems to be pain free, his appetite is coming back, his immunity is coming back up, and he’s noticeably more active and talkative. The one area that still needs improvement is his platelet count, which is still low, meaning his body is not producing them on its own. In itself, this is not a factor that would require us to stay in the hospital, so the doctors are optimistic that we may be able to go home on Tuesday.
We are somewhat excited to be able to go home after nearly a month of hospital living, however, there are a lot of factors related to Adam’s care that are currently taken care of by the nurses and care providers, which will become our responsibility when we leave. Medication in particular is a big one. His NG tube has been very helpful in administering medication directly to his stomach without him having to open his mouth or taste it. The plan is to remove the NG tube prior to discharge, which means we will have to give all his medications by mouth. He is not the most cooperative kid when it comes to oral medications, so we shall see how successful we are. On the positive side, he won’t have an NG tube stuck down his throat and plastered to his face!
Even tho we may be discharged, we will most likely be back at CHLA within a few days, as his next round of chemo is due this Thursday, we don’t yet know if we’ll stay with that plan or delay a bit to give Adam (and us) a chance to recover more.
Prayer Requests:
- That the biopsy would be without incident, and the sample would be viable
- Adam’s health would continue to improve
- The discharge and re admission would be smooth
- Mom and Dad would know how to take care of Adam at home
- Not mentioned in post- health insurance is a necessary hassle to deal with. And will have many ongoing issues to sort through
Here’s our boy back to tummy sleeping
Play time with Grandma and Grandpa
Adam and your family are in my thoughts and prayers. Please let me know if there anything I can do to help.
Your lil boy has been in my heart ever since I read his update two weeks ago. I will keep your prayer request in my heart and will have my 3 boys keep him in prayer – their prayers may have a more direct connection to God. So happy to read of his improvement and you guys will be fine. Trust that he understand you even though he’s so young and talk him through everything you will be doing and make it fun. Will keep you both in prayer because I probably can’t imagine how hard this really must be.
I wanted to pass on the contents of a note sent to us from Susan, the wife of our Rector.
“You and your family have been constantly in my heart, thoughts and prayers since you informed me about Adam. There is no way for me to know the depth of your family’s pain, but a part of me shares it with you. I am praying for Adam and all of you.”
And so are we.
For meds that don’t taste good, consider talking to the pharmacy to see if they can add flavor. The other option is to buy strawberry syrup (the kind you use for ice cream sundaes) and mix just a little with the med. Always shoot meds from the side of the mouth vs straight from the front while holding the head firmly. The result is less gagging and hopefully more swallowing!
Joyce and I join you in these prayer requests.