Quick Update

I haven't had a lot of time, but I thought I'd add a quick update. Matthew's fever stayed gone, so thankfully, we haven't had to go back up to the hospital. Also, his Port needle held up for the rest of the week, thank heavens! He's been so traumatized by the Port accesses these last few weeks that when the nurse finally took it out at the end of the week, his chin was quivering because he was so scared. Poor kid!

It still wasn't a super fantastic week, though. There was a mistake with Matthew's chemo, and that's very near the top of my list of worst fears! You just can't make mistakes with chemo!

It's complicated to explain, but I'll try and be clear. There were two weeks when Matthew got Ara-C (a new chemo) - this was the second half of Delayed Intensification. The Ara-C was administered by IV on Tuesday, Wednesday, Thursday, and Friday each week. Tuesday was his clinic appointment both weeks, so they administered the Ara-C there. So, the home health nurse had to come out Wednesday, Thursday and Friday for both weeks to administer the doses at home. Plus, she had to come out on Monday both weeks to place Matthew's Port needle and get a CBC (Complete Blood Count - to find out his numbers).

So - there were massive Port needle issues, which I have already blogged about. Basically, the needles kept bending. We figured out midway through week 2 that it was because the needles the pharmacy had sent us were not for a power port, which is what Matthew has. Apparently, it makes a difference. Once we got the right needles, the Port problems stopped. Part of the problem with the bent needles is that our home health nurse isn't comfortable with accessing a Port. Her first time was during this two weeks, with Matthew. She was very sweet, and when it finally worked, I think she was more relieved than I was. It was still really hard, though. On all of us.

Anyway, each week, the pharmacy sent new meds. There would have been 6 syringes that were pre-dosed with medicine each week, except that some of it ended up being administered at the hospital, because of the port problems. So, during week 1, we were given 3 Zofran (anti-nausea), and 3 Ara-C. The Ara-C was administered 2 out of those three times at the hospital instead, and we gave him oral Zofran instead. So, at the end of week 1, we had 2 leftover doses of Zofran.

The Zofran label says to give it with Ara-C, so at first, we thought there was left over Ara-C. I called the pharmacy, and talked with the pharmacist. We figured it out, and I told him that the next week, he should just send 1 Zofran, along with the 3 Ara-C.

The next week, I got 4 syringes, and didn't look at what they were. (never - ever again!)

On Thursday, the nurse pointed out that there was no more Zofran, and there was an extra Ara-C.

Now, I can't decide if the pharmacy sent 1 Zofran and 3 Ara-C like we talked about - and if so, then the nurse administered 2 Zofran and no Ara-C on Wednesday - OR - if the pharmacy sent 4 Ara-C and no Zofran.

After she left, I dug everything out of my sharps container (which I think may be illegal...) and I only found two empty syringes of each. There should have been 3 because of the one visit during week one. The only thing I can think of is that the nurse that administered that (a different nurse than our regular one - she was teaching our nurse about accessing a Port) may have taken it with her. She had a big nurses bag, and maybe used her own sharps container.

Anyway, what it boils down to is that we don't know. We had to decide if it was more dangerous to potentially miss a dose (which could change his good prognosis - maybe only marginally, but to me, ANY change is unacceptable) or to get an extra dose (which could be dangerous because this is a serious chemo, and could cause damage to his body if administered in too high of amounts.)

So, after lots of time on the phone with the pharmacy and the on call oncologist, they finally decided that because his dose is smaller than what they administer with some other types of cancer, it would be okay to give the last dose, knowing it was potentially an extra dose.

They gave it on New Year's Eve.

That was the last dose of chemo that will make Matthew lose his hair. Delayed Intensification is essentially over now. He has a chemo pill until Wednesday, and then it's recovery for a few weeks, during which he will probably need blood transfusions. But no more harsh drugs for a few weeks.

I think it was an oddly appropriate way to end 2011. Good riddance to the worst year ever. I'm glad to be starting the new year with the worst treatment phases behind us. It gives me new hope.

Happy New Year, everyone! We're looking forward to it with hopeful hearts.