We have had another busy week, but thankfully no inpatient stays for this week.
Tuesday, March 4th Update:
Emily had clinic this afternoon, and first time in a long time she didn't need any blood product transfusions. Everything is still low but not low enough to require anything. She is still neutropenic but hopefully by Friday when she has clinic again, she will be no longer be neutropenic. When she got there today her blood pressure was really high today. They gave her Hydralazine and checked her blood pressure every 15 minutes for hour and half and talked to nephrologist who requested that we up her dosage if enalapril. She has been getting headaches a lot which could be from how high blood pressures. Next week they want us to meet with the nephrologist but they think she has chronic kidney disease from long term chemo that we will probably have to deal with long term or it could be short term. Insurance doesn't cover the blood pressure machine for home so they told us signs that we need to look for. Other than that Emily seemed to be feeling so much better today and she is eating well.
Friday, March 7th Update:
Emily had clinic today and it was an all day visit today. Emily is still having high blood pressure! Thank you to some wonderful people who sent Emily a blood pressure machine to be able to see what her blood pressure is. They know who they are and we thank you so much! All of her counts are starting to come back up slowly except her platelets took a big drop from Tuesday. We did learn that she was positive for ParvoVirus PCR (but that was taken over a week and a half ago now) which helped in her counts dropping to zero along with the chemo. We have no idea how she would get this but Dr Gowda says it's in the air and because she is immunosuppressed she could easily get it! So along with the chemo, her counts dropped a lot. He said they would normally give IVIG for that, which we did and antibiotics, which we did. I was worried wondering how do we know she is not still fighting it and he said that her counts are coming up, so we know she is past it. He said if her sister were to have it, they don't normally treat it, you have to let it pass. Today her ANC was 1100 so we are finally out of the danger Neutrapenic zone and only In the precautions of being careful. With that we are going to start her back on her two chemos. Dr Gowda did not want her to go on the thalidomide and Celebrex since it is supposed to drop your counts a lot and we didn't want to go back on full dose of the two she was on, so we are back to etoposide and cyclophosphamide! However instead of taking both of them everyday she will take 1 of them every other day. We are currently working with Dr Sholler to get Emily in soon for scans, bone marrow to get her on compassionate use of DFMO. We really need to get Emily's bone marrow and platelets back up so that she can do other trials and platelets not be an issue. Julie, Dr Sholler's nurse, said she is working on it, so hopefully in a couple of weeks we will be on our way. As long as Emily has no progression she will be able to go on the DFMO for a while! We are looking Into a trial that is Dr Lucas' trial so we are waiting to hear back! This trial we are hopeful we could do is in Boston at Dana Farber, but again have to wait to hear back.
Today she did need to get platelets since they dropped so much. He again gave her 4 units since the one from this past Sunday lasted until today. She continues to get Tylenol, Benadryl, Pepcid and solumedrol which have been helping in not having any reactions like she had before along with the platelets going slower. Thank goodness!
Like I said before her blood pressure still remains an issue. Dr Bunchman who works with Dr Lo came to see us and he explained that he thinks this is a side effect that Emily will deal with for the rest of her life from chemo, radiation, MIBG radiation and more
Chemo. He called it Microangiopathy disease which is small blood vessels from treatment. So he changed her medicine to lisinopril and upped the dosage a bit to help with her blood pressure. So starting tomorrow (since she had received her morning dose this morning) she will start the pill which should should last for 24 hours where the liquid was much faster acting and not staying in her system as long. Tonight she will just get her other dose and no longer take the enalapril!
We are hopefully her counts will continue to go up and she doesn't have to deal with the chemo side effects from doing them every other day. We are also hopeful to get her to Michigan soon so that we can get her on the DFMO and see her hair growing back and not seeing the nasty side effects she had!
Please continue to keep Emily in your thoughts and love. And remember to hug and kiss your kids every night and tell them you love them!
#neuroblastomasucks #emilyupdate #emilysjourney #emilyhubbeldotcom
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