Poor Ally, Poor Carly

The days are getting longer and harder for us. After going to the clinic this morning, with the expectation that Ally would be taken off the fluids and de-accessed, we were told this could not be the case. The methotrexate level in her blood sample was still too high (1.4, needs to be below .1) and she needed more of the rescue drug (leucovorin) and another 24 hours of fluids. So this particular round, although identical to the two treatments before it, is not following the same path. I am not sure if that is because it builds up over time or the body gets used to it, or what. But this time it is longer and also harsher on her. It is crucial to get the methotrexate out of her body as it can damage her internal organs. Ally felt terrible all day today. Barely lifting her head up, not speaking at all, she did absolutely nothing all day. I canceled her home schooling and also canceled a board meeting I was supposed to go to tonight. Which is a good thing because this evening our other daughter came down with a 102 temperature. She now must have the virus that has been going around, and hoping it is not the flu. I desperately tried to keep the two girls apart, but they were both needing me at the same time and Jerad was at a work function until 9:30pm. Let me just say it is impossible to tell a two year old to go sit in the other room when she is sick. So if I had to do anything for Ally (which is a lot when she is carrying around 20lbs worth of fluids everywhere) then Carly was also right there. I will not be surprised if Ally ends up back in the hospital. She is not tolerating the chemo well and then there is also the strong possibility that she is getting sick.

She is taking so many medications now. I took a picture of how many I gave her right before bed. And she gets the meds two or three times a day now...I even set my alarm to give her one at 3am last night.

So that little dish contains her leucovorin (rescue drug for methotrexate), antibiotic for her toe infection (another crappy story), megase (appetite stimulant to make her eat), 6-MP (an oral chemo), and prevacid tablet (for her stomach). About an hour later she threw up and I am guessing that most of these medications did not get digested. But I don't know and I can't begin to try to re-dose...which reminds me that I should have also probably given her an anti-nausea pill. AAAAAAAAAAAAAAAAGGGGGGGGGGGGGGHHHHHHHHHHHH.

So I had help lined up for tomorrow, because I have to take Ally back to the hospital yet again. Sixth day in a row. But now I can't pawn my other sick child off on a friend or family member because I don't want to get their kids sick and I also don't think that would be very nice to do to Carly. So, again, that means that Jerad will have to miss another couple hours of work, if we are lucky. And it just goes to show why so many of these parents don't work at all probably because they have lost their jobs as they try to save their children. We continue to thank the people at Synergy who step up to the plate and help Jerad through this difficult time. And poor Jerad continues to see many late nights in front of his laptop.

Thank you to all the people who are trying to step in and get us groceries and food and offer to help with the kids, etc. It is a tough time for sure and we are grateful to those who step forward to help.

Sorry for yet another depressing post, but it is what it is. We are trying not to panic through this one. I am hoping that both of my girls perk up and feel better tomorrow. My throat is hurting as I type this so maybe a little hope for me too.