Details on Chemotherapy Round #4

Intensification Chemotherapy, Round 4 of 5.

This round of chemotherapy has an average stay of 35 days.  Chemotherapy will last 6 days so she will spend most of her time waiting for her blood counts to recover from the chemo.  Erin will receive ARA-C 2 times a day for days 1-4.  She will be given Mitoxantrone (I hear it's bright blue) 1 time a day on days 3-6.  We are started her first dose around 8:00 pm last tonight.  The Mitoxantrone is a chemo drug we haven't taken yet, but it is similar to the Daunorubicin that she had before.  In a few posts ago I mentioned that we were part of a clinical study on a new drug, Gemtuzumab, but that she won't be getting the new drug, she is just part of the study.  I know it was right that we weren't supposed to give her Gemtuzumab, but at the same time I wonder what kind of side effects it would have on her if she did have it.  They give Gemtuzumab on day #7.

I talked to Dr. Barnett about the long term treatment that Erin will have with her AML.  It may seem strange that I haven't asked many questions about her future treatments.  I have not asked because there is so much to take in for each of her 5 treatments that we just couldn't add more details (or emotions) to what we have been slowly learning and processing.

When Erin is done with her chemo (anticipated to be before the 1st of December) they will take out her Central line.  YES!  That was the best news.  With her central line in place she cannot take a bath (which also means, no swimming).  It is such a pain to take care of her line.  I constantly worry about it getting broken.  It is also so invasive and people can see her tubes sticking out and I guess I'm a bit self conscious about that.  Being bald is something for people to stare at too.  I guess it's just that I really don't like having so many things on her outside that make her stand apart from a normal two year old. 

When her treatments are done, then she will come back to the Hematology Clinic at Primary Children's once a month to do blood tests.  The second year after treatments she will have Clinics every other month.  The third year after she will go back every 3 months, and so on until 5 years.  After 5 years she will only come back once a year until she is about 18 years old.  If she stays in remission for 5 years after her treatments then it is very unlikely that she will ever relapse.  The next 5 years will be a little nerve racking for me, but I'm thankful that I have the Spirit to comfort me when things get tough. 

If she does relapse, then she will have 2 rounds of chemotherapy and a bone marrow transplant in her future.  The bone marrow transplant can come in 3 different forms from a perfectly matched donor- (1) actual bone marrow from a donor, (2) stem cells from a blood draw from a donor, or (3) stem cells from chord blood.  It was all very interesting to understand how it all works and I am so thankful that Dr. Barnett took up so much of his long day to talk with me. 

Erin's about to receive her ARA-C this morning.  She is eating her breakfast and watching TV.  I woke up this morning to Erin sitting on her bed furiously waving at me.  She is such a sweetie.  It is a wonderful experience to take care of her while she is here.