Thursday, July 7, 2005

Roller Coaster

Another bit of a down day for me. I think I am just exhausted, not in a physical sense but in an emotional sense. It’s not that I didn’t know how hard it was going to be doing this on my own, I knew what I was in for. I have no other place I’d rather be than with Dylan. I’m just finding it hard on me this week. On the 26th of this month, it will be a whole year since Dylan was diagnosed. Last night Dylan woke several times vomiting and having more blood noses, I discovered more blood in the bucket when I woke this morning so there must have been times that I didn’t hear Dylan and he didn’t bother to wake me, what a brave boy. At clinic he brought up fairly large blood clots, it was horrible. I guess since Monday, I have seen far too much blood and it has upset me. The doctors are not too concerned with this tough and the vomiting blood is due to it running down from his sinuses. At clinic today, we arrived at 8:30am, by 11:00am Dylan was in the bed area preparing for a blood and platelet transfusion, Dylan’s also neutropenic with an ANC of 0.1 I had a bit of an emotional break down once Dylan fell asleep from his pre medication for the transfusions. I rang Rebecca and she came to my rescue within 15 minutes. After a good cry today, I am feeling much better. We arrived back at the Ronald McDonald House by 3:30pm. Dylan and I curled up on the bed and watched “National Treasure” and now Dylan seems much better while he plays his play station games. So far he has not vomited anymore. Tomorrow we need to go back to clinic for a few blood tests, then TPN labs and tests again on Monday. Tuesday Dylan will have a CT scan, followed by pre MIBG injection for an MIBG scan on Wednesday. After the MIBG scan, Dylan will have an anesthetic for a bone marrow biopsy. It will be a busy week at clinic, hopefully we will get at least Thursday off, but I am sure Friday he will need to check in again. I just have to keep my fingers crossed that he doesn’t end up in hospital in the mean time being neutropenic. The doctors have increased his GCSF injection to 0.67ml daily in the hope his neutrophils will rise soon.Thank you to everyone for signing the guest book with such words of support and love. I have to snap out of this “feeling sorry for myself” state, and I plan to wake up tomorrow with the same strength and courage that Dylan inspires me with everyday.