Today was our HUGE appointment for Matt. He was due for sedated MRI's, along with audiology and chemotherapy. We had to be to the hospital at 7 a.m., so we decided to go down last night and get a hotel.
This morning, we started by registering in same day surgery. Man, it was a zoo in there! We got there slightly before 7:00 and every seat was full. We got him all checked in for the general anesthesia and then headed up to audiology at 8:00. His audiological testing came back showing some hearing loss. We have expected this, but I still hated to learn about it! The loss is slight, at this point, and is also in the high pitch (i.e. seldom used, and never in regular conversation) frequencies. Matt's hearing was still in the low-normal range, but I worry about it falling further! His left ear also now requires more volume for him to hear well.
After audiology we went up to Oncology so Matt could have his clinic visit and have his labs drawn (new labs must be drawn within 24 hours of receiving chemo). They told us that they wanted to admit him to the PICU after chemo., to stabilize him and make sure he stayed stable for 24 hours. He got so sick after the last round of chemo., and dehydration is a HUGE concern for Matt because of his DI. I didn't like the idea of the ICU because, well, it's the ICU!!! However, that is the only place in the hospital that they can give the DDAVP through a continuous drip. So, we figured that was the plan. We then went back to same day surgery so Matt could change into a hospital gown in anticipation of his MRI's. He and Warren played video games, and we just waited. There was a little boy in there with markers on his head - I thought, 'those look too familiar!' After I saw one of the Neurosurgeons go talk to them, and heard the word 'tumor', I just felt so bad for this family! I spoke to them for a moment and told them good luck and that I would be thinking about them. He was just such a sweet little boy, and it breaks my heart when I see another child embarking on a similar journey to ours!
When we went down to MRI, they got Matt in right away. We met the anesthesiologist, and Matt was hooked up to fluids through his Broviac. The doctor was telling us what to expect and said that when he put the anesthesia through Matt's line he would be out in 5 seconds. I thought it was a figure of speech, until he started putting the
Propofal through! Honestly, it scared the crap out of me that there are drugs that can knock you out that fast! It was literally 3 seconds , Matt's eyes rolled back in his head, and he became completely limp.
The MRI's lasted several hours, and after Matt woke up from the anesthesia we went back up to Oncology. They had us go back to a separate room in 'infusion' (never a good sign.....) so the doctor could talk to us in private..... When the doctor came in he reported the good news first. The tumors that have spread and seeded (so the back of his head, brainstem and down his spine), have reduced. They are thinner, and the chemotherapy is clearly having an effect. However, the main, large tumor in his hypothalamus/optic chasm has grown.... Of course, the growth is small, but there is growth. The tumor also showed up 'brighter' on the MRI's, which shows active cells. Because of this bad news, they decided to change Matt's chemo. protocol. This wasn't completely unexpected, as this new drug was the one that the doctors at John's Hopkins wanted him to have. They felt that Carboplatin was a reasonable place to begin treatment, but if the results were not as positive as we had hoped, that this new drug,
Temodar, should be used. Particularly, if Matt's tumor is in fact a Oligodendroglioma, Temodar is the best choice. They also increased Matt's MRI's to every 2 months instead of every 3. Hopefully this new drug will shrink his main tumor! Another benefit to the Temodar is that it is given in pill form, and is given at home for 5 days in a row, every 28 days. This is more convenient for me, both with a new baby coming, and also the hectic holiday season. We still have clinic appointments once a month, and I'm sure we will still be in often for this or that, but the long chemo appointments will be over for awhile - at least until December or January when he has his next set of MRI's and we re-evaluate.
One sort of funny thing. As we were talking to the oncologist about this new drug he said, "we will need to contact your insurance to make sure they will cover this drug, it is very expensive..." I called BC/BS and they said they did. Shortly after my call, the nurse came in to give us the prescription and said, "now, do we know your insurance will pay for this drug?" On the way home from the hospital we stopped at our pharmacy to get the prescription filled (we really didn't even expect them to have it, so were surprised when they did!) The pharmacist looked at the prescription and said, "does your insurance know this is coming through?" At this point, Warren and I were just looking at each other thinking, "how expensive can one drug be???" As the pharmacist handed us the bottle and told us our co-pay was $50. He then said, "and your insurance covered the rest of the $2,613!!! HOLY-MOLY!!! For ONE MONTH, this drug costs almost $2,700! That is for 5 pills (well, we actually received 15 pills because they only had the 100 mg. pills and Matt will need to take 3 per day for 5 days each month. I know I've mentioned it before, but thank goodness for health insurance!!!
So, there is my very long update on our very long day! The good news is that Matt seems great! His memory is coming back, he has been feeling wonderful, and he bounced back from his long day quickly. I will keep him home from school for this first dose of chemo (so this whole week), but we are hopeful that he will do well on this new drug. We are also praying that it is effective on the main tumor. That sucker needs to SHRINK!!!
Love,
-Alli
