AIM Day 15 & 16

ETUU - yup I put two U's in there as it was an unexpected unexpected... details to follow.

Monday was a pretty quiet day, we stayed close to home again and worked on destroying the house. One of the things about being home all the time is that the kids can make a disaster in every room in a hurry and Shelley and I should be able to keep up but either we are slowing down or they are getting faster at it! Carter had a hockey game after supper, and after the hockey game, cousins Johnathan and Ella came over for a half hour or so to provide a new face for the boys. The kids played pretty well together.

This morning (Tuesday) I was playing Mouse Trap with Nathan and Justin when nurse Cathy from the Cancer Center phoned at about 10:30am. She said that they were double checking the protocol and asked if we could come in as soon as possible to get Nathan's blood counts checked. I was kind of surprised but said OK. Shelley and I were discussing whether to take Justin or try to make arrangements so I phoned Cathy back and she said that we would just be an hour so go ahead and bring him. We got to the Cancer Center after 11am and only had to wait a few minutes before Nathan was able to go in. He had his port accessed and blood drawn while Justin watched even though Shelley still can't watch. Then he was checked over by Dr Ali, which went very well today as Nathan showed his little brother just how good Nathan could be to get checked over. And then we were off to the playroom to wait for blood results.

While in the playroom there were five other kids in there, ranging in age from about 3 to 14, from a Mom who was undergoing treatment. The play room is supposed to just be for pediatric oncology patients but sometimes other kids are in there. The three boys were at the back playing the games on the Playstation and Nathan wanted to watch but there was no room for him. After an hour or so, their mother was done and they all left the playroom as we were eating dinner. Nathan went to play the Playstation shortly after they left and there were no games left! The other kids that had just left had taken all of the game CDs from the game cases - stealing from the Cancer Center. Now that burnt me a little bit and made Nathan sad that he couldn't play games while we were waiting.

A little after that, Nathan's results finally came back, it took almost two hours. Dr Ali wanted to see all of us again so back into the room we went. He had to step out as we got there so Cathy talked to us for a bit and told us that they made an "oops", that they screwed up. Now isn't that something you like to hear. When Nathan's counts were low last Thursday he should not have gotten the Vincristine. And when they told us that since his counts were low that he did not need the Methotrexate and there would be no make up shots, they were wrong. Evidently the protocol says that if the counts are not high enough to wait four days and take blood work again. Nathan's counts came back in the acceptable range for treatment so they decided to give him the Methotrexate today and now he will wait 10 days from today before he gets the Methotrexate and Vincristine together. He also has to wait before he starts on the Asparaginase again so essentially this has put his treatment plan back four days. We asked if they could just go ahead and keep the Asparaginase and Vincristine on track, however they told us that the Vincristine and Methotrexate had to be given together and then the Erwina L-Asparaginase had to follow those two. OK... so I asked the next logical question which was, is there going to be any trouble with his treatment since he did not get the Methotrexate and Vincristine together this time. The answer was "We're not sure but we don't believe so". Again, not overly reassuring - truthful, but not reassuring. We were finally able to leave the Cancer Center shortly after 2:30pm; from one hour to three hours, not quite the same. At least Justin was pretty good most of the time we were there.

We kind of expected that this treatment protocol wouldn't go flawlessly as none of the others had, but this really was an unexpected development again. This changes all of the dates that we had, and makes for some interesting times around Easter that I'll get into later. Please continue to pray for all of us.