Ampho-terrible
Good Afternoon,
Molly has had a pretty terrible week. All in all, the Doctor teams working on her have not been able to identify the exact cause of her fevers. The radiology team has determined that they think it is due to a fungal infection in her lungs, so based on that information she started the Amphotericin (Ampho-terrible) IV medication. This stuff is bad. She had a really bad reaction on the first dose on December 1st. She promptly tells me about 10 minutes after they started the infusion - MOM! I can't breathe! Call the nurse. She also had really bad rigors, nausea, fever, and vomiting. Well needless to say, it has been a roll coaster of figuring out exactly how she can best tolerate this med and hopefully we are getting closer.
Thankfully, nurse Pam is back today and she is helping get this sorted out for Molly. She will have certain pre-meds differently tonight to help. Basically what is happening is that even with the Tylenol and Benadryl and Anti-nausea meds as pre-meds, she is still getting fevers and nausea afterward... which ends up being about 1-2am at night. UGH. Please pray for Molly to tolerate this medication better. She is also on Oxygen while sleeping due to her lung capacity issues.
There have been two positives this past week, which is that she is off of the IV cefapime and she now has a neutrophil count (albeit small - 100)!! This is her first count recovery post first round chemo (day 35).
Based on previous posts, the chemo was supposed to start yesterday... but her treatments are on hold until this infection gets under control. Aaron and I have been asking some great questions (per Dr. Koschmann :) and hopefully they will take our treatment plan questions to their large team meeting happening this afternoon so we can get some clarity on the next steps. Molly will have to be on this (or another) anti-fungal med for about 6 weeks or so.
Oh, there is one great thing - which is that she definitely has 2 perfect 10/10 donors on board, ready to donate when the docs say go!! THIS IS AMAZING and I know you two are out there and some day you may read this - a heartfelt thank you to both of you and we can't wait to say thank you in person some day!! The docs like to have 2 donors in case one of them falls through or there is a medical issue, but only one will have their cells sent to Molly.
I cannot tell you how much the meals, cards, gifts and money have helped us!!! Please know that if you haven't received a thank you note from us, it is not because we are not thankful.... 💕 You all are making it so we can continue to support Molly in all ways possible and we send our love and heartfelt thank you!
Here is her one-eyed picture from this week - I think this was the only time she really smiled in the past 9 days.
Our dear granddaughter, If we could take your pain and make you better, we would. We think of you all the time. We love you to infinity!
ReplyDeleteThat amphotericin is nasty stuff. It's like Molly is getting a tour through the entire ick side of the medicine chest! I hope they can dial the pre-meds in and get something on board that works for that delayed nausea. It sounds like you have a great, responsive nurse in Pam. We are all thinking of the whole family and sending hope into the ether for rapid healing.
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