December
Dec 7th...
Michael had another finger poke for his blood work and they are going really well for us. He does this all on his own now. But this time he was playing games with the nurse and wouldn't give her his finger... so out came the 1, 2,3 approach and after 3 would be an arm poke... at 2 we did a finger poke :)
counts are: wbc 3.72, hgb 126, platlets 176, & neutropolys 1.94
He also had another session of relaxation therapy which went great. When it came time for his chemo he willingly walked on his own into the treatment room and jumped up on the table and laid down waiting for his music to be put on and got ready for his needle. Jessie came in again and held his hand... he was also showing off to her so she could see how brave he is now. And he closed his eyes and sang Barney songs and it was over without even hurting him . He did keep still but you could still hear the fear in his voice as he sang. The nurses were amazed and very glad. He has come such a long way and I am so proud of him. He is one strong little boy!
After chemo he insisted on going to the oncology floor and visiting all his nurses and he had hugs for all, DR's included. He feels so secure there and I really think now he knows that they are the ones that helped him to get well instead of nasty people like he thought when he was first diagnosed.
Cheo is very pleased with how Michael is progressing... he has grown another cm and has lost a little weight. I put the weight loss off to all the energy he is using running all over the place... And his hair is slowly starting to grow back ... I had better take my father and son picture soon while they still have no hair!!!
Dec 14th... wbc 5.2, hgb 127, platlets 203, neutrophils 3.2
Today's appointment went well again. He kicked up a little fuss but nothing we couldn't get around. Like last week he didn't feel the needle so that is in itself great. He keeps growing taller but not gaining any weight, if anything he is losing weight but not enough to be concerned about. He is just feeling great and a very very active 5 year old. The only time he is still is when he is asleep!
Dec 21st... wbc 3.11, hgb 115, platlets 219, neutrophils 1.57
Michael was more upset by the fact that he couldn't eat rather than the idea of a lumbar puncture. He knows that he is asleep and doesn't feel anything. He never seems to have a problem after he wakes up. This time he woke up after 25 min. and hollered "yippee, I'm awake... where's my chocolate!!" So we had to hunt down some chocolate for him as the gift shop was closed... not a difficult thing to do with Xmas fast approaching.
He spent his time waiting by watching TV, school with Barb, playing with Jessie and annoying his sisters(his favourite thing to do!). He was a little upset when his port was accessed but we relaxed together and it was over before he knew his IV was even hooked up. What a difference this relaxation therapy has made for all of us. Just before we left we found out all the Ottawa Senators were going to be at Cheo on the 22nd to see the kids so we picked up a Senators hockey shirt for Mike to get signed before leaving Ottawa.
Dec. 22nd...
Well a trip to Cheo today and not for chemo... the kids had a blast getting autographs and visiting with the Ottawa Senators... and Michael was interviewed and on the news which we taped of course... what a ham!! Nice to be able to go to the hospital for something other than medication.
Dec 23rd...
Well today I had to pick Michael up from school, he said he didn't feel well. When he got home at lunch his temp was 37.5 which is not too bad. Within 1 1/2 hours his temp. had gone up to 38.8 which prompted a call to Cheo. We were told to take him to our dr. and get an antibiotic if he found anything. Well Michael has 2 ear infections :( poor little guy, so he is being a couch potato and watching cartoons. Hopefully this medication will clear up the problem and we can be well for Xmas. His counts are pretty good so at least he has something to fight this with. I will post later with how he is feeling... other than being crabby and hot he is okay.
By evening things changed and his temp kept going up past 39 so Cheo told us to go to the hospital and have a cbc done.
the counts were - wbc 2.4, hgb 118, platlets 245, neutropolys .71 and they also told me that there were blasts in his blood of .04!!!!!
I called Cheo and they said that it was probably an error made by the tech. That didn't really make me feel much better because he had a fever all night and then there was those blasts..... I was to watch him all night and give him Tylenol & if he still had a fever we were to come to Cheo tomorrow...
Dec. 24th...
We phoned Cheo this morning and they told us to have another cbc done at our regular hospital and to see what they say.. counts were wbc 2.1, hgb 122, neutropolys 1.1 & platlets 192 and NO BLASTS!!
Apparently the tech at the other hospital read the counts wrong and interpreted other cells as blast cells. Our local hospital checked with 3 different people and they all said no blasts... stress overload.. his fever also broke this am and he is running wild again.
What a big scare we had and right before Xmas.. we were really afraid that the cancer was back. I don't ever want to go through that again.......
WELL MERRY CHRISTMAS AND HAPPY NEW YEAR TO ALL!!!
THE GREENS
Dec. 27th...
Well we had an eventful holiday so far. Mike still has a fever on again and off again but he overall feels really good. His throat is a little sore now but not too bad. Whatever this virus is, it just seems to want to hang on. I talked to our oncologist and she said that she will be looking very closely at his blood smear on Wednesday and at this point as long as the smear is good they have no reason to do a bone marrow aspiration but if his counts don't come back up on their own in 3 weeks then they will. So we are just waiting to see what happens now. When your cell counts are low it is very hard to fight off illnesses at the same speed of a healthy person. I will update if anything else is new when it comes up.
Well is this where I tell you what we did on our Xmas vacation?
It all started when Michael got a double ear infection on December 23rd. We went to our family dr. who noted 2 red ears and gave us some amoxocillin. By 9pm his temp. was over 39 Celsius so our oncologist at Cheo wanted us to have some blood work done to make sure that he wasn't neutropenic. Well we went to one of our smaller hospitals to have it done as we thought that they wouldn't be as busy. Well that was true but the tech. made a mistake reading the smear and they told us that there were blasts in his blood. Big scare #1!!!!
On the morning of the 24th we were told to go to our regular hospital to have our blood test repeated as our oncologist was sure it was read wrong. Well she was in fact correct. There were NO BLASTS in his blood.
We were on the antibiotic all weekend but the temps kept coming back. So seeing we were going to be in Ottawa on the 28th anyway for a show at the Corel Center we decided to have another blood test done. One of the oncologists read it and saw once again no blasts but his counts were all lower. But we left as they found his ears were fine and his fever had broken the night before. When you are neutropenic you can also run a low grade fever.
On the 29th we had our clinic appointment his counts were: wbc 2.08, hgb 126, platlets 94 and neutropolys .33 ~You need neutropolys of .50 to get chemo so we went home with a good checkup but chemo was held for 1 week. He weights 18.3 kg now.
On Dec 30th I took the girls to our family dr. to have their colds checked out to make sure that there was no strep going on and had Michael checked too...just in case. He was fine and his ears looked clear.
We had no sooner gotten back from our Dr. and Michael was trying to eat something as he wanted to go out and play in the snow when he went funny... I tried to talk to him but he was ignoring me... so I thought at the time. Well I came over to look at him and notice right away that he was going into a seizure similar to the one that he had back in Feb of 1999. I phoned some good friends of ours to come here for the girls and then I called the ambulance. I phoned Ray home from work as he had only just returned to work 2 hours earlier from his Xmas holidays. The seizure had ended upon arrival to the hospital and he seemed agitated but otherwise fine. No recollection of what had gone on. He was wanting to go home. Cheo asked us to go home and come in on Friday the 31 for a CT Scan and a lumbar puncture to rule out relapse and meningitis. They didn't expect to see the meningitis as he was otherwise fine but they still have to do the test. There was just too much flu to stay in our hospital with him being neutropenic.
We arrived home around noon and Michael had fallen asleep in the van... upon awakening when we got home he went into another seizure that seemed worse and we had to go back by ambulance. Both times I called Cheo first so they were aware of what was going on.
This seizure lasted more than an hour even with anti seizure medication. They then gave him some valium also and gravol. Pembroke called a helicopter to take us to Cheo... not the way I wanted to have my first helicopter ride!!
Finally around supper time we had our CT Scan and an EEG. We also did blood work and cultures from everywhere.
Blood work was ~ wbc 1.8, hgb 116, platlets 83, neutropolys .50
Around 7pm he went for a lumbar puncture but he had to be awake for this one for the meningitis test. Fortunately he had fallen asleep but the Dr. also gave him a mild sedative, the same one that made him see bugs and hallucinate in Feb, but it was less of it. He never woke up through the whole procedure which was good.
The smear came back negative for meningitis and also NEGATIVE FOR RELAPSE... now we can relax a bit as there are no active cancer cells. We still need to find out why he had these seizures. The fact that the second one was so long was serious but the fact that he was breathing though out was good.
We have a MRI scheduled for Tuesday of next year. Michael was up until 5:30 am high as a kite from his sedative and was a real source of laughter... we finally put a movie on for him and went to bed to find the TV on at 6 am and him asleep. He was eating pizza that night at 3 am.... at least the sedative made him crave food !!!
Dec 31 counts have dropped ~ wbc 1.34, hgb 94, platlets 62, neutroploys .03. At this point he is complaining that his ear is sore... very red ear... the infection is back and that is the cause for the blood counts dropping. All cultures came back negative and the electrolytes are all balanced. He is eating like a little piggy now and gaining weight.
They have him on 2 antibiotics by IV... they are gentimycin and peppercillin. These are 2 very good meds.
Well Michael never stayed awake for new years he fell asleep by 10pm.... :o( But a good friend of mine stayed the whole time with me as Ray had to go home with the girls. He brought new years in with the girls and the rest of my friends family. They taped Time Square and we will do New years again once Michael is home and our family is once again together.
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