Today is day 16 of Mathew’s second chemo cycle on Cyclophosphamide and Topotecan. His blood counts dropped again and he needed another transfusion of platelets. This time around he went to a day IV clinic at a local hospital, on a Saturday, then returned home to await the results. We were called about 1-1/2 hours later and told to proceed to the emergency room at the Regional Hospital.

I called the ER first to make sure everything was in place for Mathew’s arrival and to be sure we didn’t spend hours in the waiting room since his blood counts were critically low (the immune counts). Once assured that all was set, away we went.

We arrived at the ER around 3 pm and left at 8:30 pm. The major holdup was accessing Mathew’s file for the blood products transfusion permission sheet and then ordering the platelets. Mathew was put in one of the isolation rooms which had its own bathroom. The staff was excellent.

Mathew was very cranky about spending all that time at two different hospitals but held on well until he got home.

The last couple of weeks have been very hard on us all. Mathew is suffering bone pain from the neupogen injections again, he seems to be getting headaches around this time of the cycle again (think it is chemo-, or neupogen-, related) and then his right leg & hip area are still bothering him. On top of that he is increasingly agitated, crying and worrying obsessively.

It took a little while to get to the heart of the matter and that process is still underway. I’m not yet ready to speak about it but one of his major worries is this new and ongoing pain in his right back. To ease his fears I explained the situation to Dr. Burnell’s staff and requested a CT scan. She is scheduling one in the next three weeks; I do believe this isn’t far off from when a scan would have been ordered anyway.

Mathew is scheduled for chemo to start again on Monday but it will depend on his platelet count again. Yesterday’s bloodwork showed it is now at 29 which is above the transfusion level (yippee) but it still has to climb to 100 or above before he can start the next round. I don’t anticipate that to happen by next Monday.

That means it will be delayed at least a week which puts us squarely into the Christmas/New Year’s timeframe. The chemo won’t happen the week of Christmas because the chemo room is not open on Christmas Day. We could proceed on New Year’s week and staff will be brought in to open the small chemo day room up on the 5th floor. Mathew has an appointment with Dr. Burnell on Friday and we will discuss whether to hold off until the week of January 4th ~ which is my preference.

When our days run into a 24 hour, unpredictable schedule it is more difficult for me to write here. Mathew wants my undivided attention presently as he is feeling crappy from the treatment. I have some breaks of time but usually I am either trying to nap, running an errand or just blankly staring at the tv while I decompress and recharge my internal batteries.

Aside from a day of light snow we continue to enjoy dry roads and decent weather. I am so grateful for the weather so far this year as it is so much easier getting to appointments, etc, without the added burden of bad weather, snow and icy road conditions.

I hope this finds all of you well and swinging into the Christmas season. Mathew isn’t a fan of Christmas; all the noise, fuss, glitz and sparkle and unusual activity sends him over the edge. Now that he is old enough to explain better what is actually going on in his head it is much easier to streamline and accept our version of Christmas. He and I have finished his xmas shopping and only a few people remain.

John dragged out our outdoor xmas decorations from the garage and we put up a rather Charlie Brown type of display this year. I wanted a bit out there for Kristen who is coming home for the holidays otherwise I might not have bothered. We are tired and extra activity is difficult to manage or entertain right now. Anyway, I took a couple of pictures that I will put on here when I can.

Happy and safe travels during this mad shopping season!

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