January 2000
Jan 1st...
counts are wbc 1.43, hgb 101, platlets 76, neutropolys .03 but the monocytes that build neutropolys are .39 which is good.
Basically we played all day with Michael..not much else to do when you are in isolation. Eat and play. I was blessed that my friend was there as it prevented me from burning out. Our families had planned to do New Years together anyway we just didn't plan to do it 2 hours apart !!
Jan 2nd...
counts are wbc 1.90, hgb 106, platlets 112, neutropolys .05 and monocytes .40. The counts are slowly rising but the ear is still sore but looking better.
Jan 3rd...
counts are wbc 2.50, hgb 106, platlets 133, neutopolys .06 and monocytes .60
Michael's counts are slowly rising but he is still very neutropenic. He is being kept in isolation to prevent him from catching any illnesses. He has basically nothing to fight bacterial infections. But the monocytes are high which is great.
Michael had his MRI today and usually they are under conscious sedation but he chose to stay awake so he could continue to eat :) we are slowly gaining weight too. Nothing was seen on the CT scan or the EEG except for a tiny spot that was either a blood spot or a calcium deposit. But the MRI would confirm that. Michael thought that the MRI was so cool because he thought it was a space ship and that he was an astronaut going to the moon. He stayed perfectly still for 35 mins. the techs were amazed. As soon as he was out he wanted to go back for another one.
The doctors tell us that Michael's seizure was a partial complex seizure and that in the MRI they saw that he had the beginning of Leukoencephalopathy which is due to the toxic effects of the Methotrexate he is getting. Mostly the IV mtx that he had in the spring. He now gets mtx in his needle and his lumbar punctures. Since it is only mild they will not change his treatment at this time and there is no way that they can tell if it will go away or get worse. In 6mths or so they will probably repeat the MRI to see what it is like then. This is what is causing learning disabilities in the children. So far Michael seems perfectly normal and if he happens to have a learning disability because of this we don't care as long as he beats this cancer.!!
Jan 4...
counts are wbc 2.19, hgb 104, platlets 145, neutropolys .11 and monocytes of .37 He is still eating and very hungry and weights 18.9 kg
Jan 5...
counts are wbc 2.97, hgb 106, platlets 180, neutropolys .23 and monocytes of .78
Michael is feeling great and wants to go home. His fever broke on the 3rd and he is still gaining weight. He is now 19.3kg. The doctor says that the seizure can have a chemical effect in his brain that is causing him to be hungry and want to eat. We did think that 4 bowls of cheerios before bed was strange... but we are going with the flow as he needs to gain a bit of weight and get his appetite stimulated anyway.
Michael was discharged at lunch time today as he is well enough to go home. We are to still keep him in isolation at home and chemo is held another week until we go back to the clinic on Tuesday January 11th. He is on another antibiotic for 5 more days and will remain on Dilantin for the rest of his treatment. Dilantin is an anti seizure medication. The good thing about all of this is that Michael remembers absolutely nothing about his seizures, he was actually quite angry that we kept telling him he was in a helicopter. He said maybe you were but I wasn't!!
So that is how we spent the turn of the new century .... but we are all okay and basically as you would say Healthy... we will redo New Years with out good friends as Michael's counts improve. We expect to go to clinic on Jan. 11th to find that his counts are okay for chemo and all is basically back to normal. We will continue to go the Cheo weekly until we are back into our comfort zone as per say!!!!!
ONE MONTH TODAY IS OUR WISH TRIP TO
DISNEY WORLD
LET' S HOPE FOR GOOD COUNTS!!
Jan 11th...
We went down to Ottawa for our weekly appointment assuming that Michael was neutropenic so we remained in an isolation room until his blood counts were in. Thankfully they were all good and now I think we can relax somewhat.
They were : wbc 5.58, hgb 117, neutro-polys 1.68, platlets 268 and monocytes are .56
~~~ below I have listed basically what the cells we watch do!!
wbc = white blood cells.....normal is between 5.0 and 14.5 ( infection fighters)
hgb = hemoglobin .....normal is between 115 and 135 ( gives energy level basically)
Neutro-polys(or neutrophils) = normal is between 1.5 and 7.0 (infection fighters)
platelets = normal is between 150 and 450 these are to keep you from bleeding internally.
So these counts mean a go ahead for chemo...he had his methotrexate needle and starts back on his daily 6mp pills and also the dilantin for seizures.
Cheo also did a blood test to check the level that the dilantin is at in his system. It was too low so they have to raise his doseage of dilantin and then check it again in approx. a weeks time. They also ran liver function tests and they were all normal. He had a physical and his ears have totally cleared up and they see no problems with him at this time.
On Dec 29th he weighted 18.3 kg and now he weights 19.7kg...amazing what being off chemo for 2 weeks does to your appetite!!! He also grew .1 of a cm. Now all we have to do is keep him eating now that he is on full chemo again.
So Cheo seems pretty confident that we will be on schedual for our wish trip to Disney world which is to start on Feb 5th to the 12th. We leave here on the 4th and stay overnight in Ottawa as our flight leaves at 9am...other than that we really don't know much else about it......... :) I guess it would be a good idea to start packing some clothes soon eh?
We have made the decision to home school Michael until after our trip to Disney world even though he has acceptable counts to go back to school... we want to avoid as much sickness as possible right now. He has been very willingly doing 1 1/2 to 2 hours of school work every day plus some computer work to keep himself busy. When he is in Ottawa he also gets 1/2 hour of one on one school with his teacher there. Some days his little buddy Jessica has school with him too.
Jan 18th...
wbc 4.05, hgb 124, platlets 208, neutro-polys 1.60 and monocytes .37
We had quite a busy day today at Cheo. We left the house at 6:45am thinking that we would get to Ottawa early but we got stuck for almost 45min. in rush hour traffic. Next time we will just sleep longer! We never arrived home until 7:30pm because we were fortunate enough to be able to enjoy the supper time rush hour...oh joy!
Well our morning started off pretty bad with Mike's blood test. He was not a willing participant and I don't blame him. He is so afraid of needles that he just can't relax for the arm poke. The finger poke is a different thing. Although most say that it hurts more...to Michael it doesn't seem to but with the needle hurts before the needle is even near him. He now weights 19.4kg and is 114.6 cm.... seems to have gotten taller again...that is if he was standing properly....we will see next week.
Then he had his relaxation session with Julie... he learned about highlights...those are things that happen to you that make you smile or happy. He said I was his highlight and Daddy.... so sweet... He is learning a lot with Julie but those 2 weeks with no chemo has really set us back a lot with his relaxation.
His visit with the dr. went well.... ears are still clear and he is very energetic and healthy.
Next the IM (leg poke).. Mike took off down the hallway... took a bit to catch him but he finally willingly went into the room for his needle. He was not helpful at all after that and screamed so much that they had to close the door.. I had to get a friend to hold his feet as he wouldn't stay still for us. There was no way to relax him this time so we had to go ahead with tense muscles and it hurt. But as soon as it was over he was fine as usual. I sure hope that we can get back to where we were in our relaxation.
We had dental at 12.... just a check up... 3 cavities and 2 bottom molars coming in. The dentist wants to wait 4 to 6 months to fill the cavities as they are small and she wants to put a clear coating on his molars to protect them as they are his adult teeth. Also his front teeth are loose and if they haven't fallen out then they will pull them out. He will be put to sleep while they do all this work, especially since it involves needles...
Then we went for lunch...which he didn't eat as per normal...anything from the hospital is not edible in his eyes...don't blame him...!!
Next we had an appointment with occupational therapy. They assessed him on his motor skills and we won't hear from that until the 31st of January when he has another session. They would like to see him for at least 8 more sessions and they will also send work home with him to do.
Basically the day went well but he was so hyper...this is how he responds to his nervousness... we talked about that and he said he would try to listen more next time.... :) yeah right!!
We are home schooling at the moment as we don't want to risk him picking up the flu before we leave for our trip to Disney World on Feb 4th. He is working on his schoolwork for at least 1 to 2 hours every day and we are accomplishing a lot. He is so eager to learn and wants to learn how to print and read. I am taking him into school Mondays and Thursdays for speech and language therapy. After our return from Disney we will reevaluate how much illness is going around his classroom before sending him back to school. It is nice to see him so healthy and energetic....
Jan25th...
wbc 3.44, hgb 129, platlets 134, neutro-polys .69, monocytes .52
Well today was quite the experience for all. We arrived at Cheo by 10am as Michael informed me that he didn't want to leave early. He didn't like getting stuck in traffic on the way down and I don't blame him. As we were about 30 mins. from home I realized that the heat was not working properly in the van... we either had no heat or full heat..there was no in-between. So needless to say we were getting the hot and cold effects of what it is like here compared to Florida !! :)
Mike's blood counts are a little low this week but they say that it is because he has gone back on chemo. They should be on their way back up by next week. We hope so as we want good counts for Disney..... Also he had his dilantin level done and he is still too low, so they are increasing that medicine again. He will now be on 1 1/2 in the am and 2 at night.. they will repeat the level in 2 weeks when we come back from our vacation.
Mike's relaxation therapist worked with him as soon as we arrived and that all seemed to go very well. He was happy and relaxed when he came back. But then came the dreaded blood work. Michael was not willing to have any blood taken from him. He wouldn't sit still and he wouldn't let me help him. He kicked so hard I swear my shins are dented...but that is okay because if he can go through this I can take a little beating.... :) Well we tried to relax him but it was not working... other people came and it still didn't work. Finally I had to physically restrain him as the first attempt at drawing blood failed and they had to try the other arm. I felt so bad for Michael as I couldn't do anything to calm him down. He screamed so much that his head hurt afterwards. He didn't want to go to school with his teacher and only wanted to be with me. I finally convinced him that school would be a good idea while I went and got him a chocolate milk.
He didn't want anything for lunch but he did drink his milk. When he gets this upset he doesn't eat at all. But I wasn't too worried as he now weights 20 kg... and I thought that he had lost weight..surprise surprise.. I guess I am just getting more muscles from lifting him. This is good that he is gaining still. He weights more than when he was diagnosed with leukemia now.
We were very worried that the leg needle (Inter muscular Methotrexate Needle) would be as bad as his reaction to his blood draw. But we were very surprised. We had Michael watch an older boy, Jamie, who was getting his leg needle too and he showed Michael how he relaxes. You know, they did the boy thing as Mike always looks up to older boys. They get along really well and this made a difference. After Jamie was finished it was Michael's turn. Well I could tell he was scared but he was trying to be really brave. He let me tickle his face with my finger and I talked to him about his favourite show on TV and also about our up and coming trip to Disney... His poor little heart was just pounding but he was very still...no one had to hold down his legs this time and he was so courageous and brave... he didn't move and he just laid there and listened to me talk to him. I am so proud of him.... he trusted in me to overcome his fear... he truly is my little hero!!
Jan 31st...
wbc 2.97, hgb 124, platlets 104, neutro-polys .70, monocytes.33
Well today of all days we had to wake up to snow. It took us 3 hours to get to Cheo this am. Because of this Michael had to miss his appointment with occupational therapy. Hopefully there will be room for him this Friday when we go for our next appt.
Michael went for his relaxation therapy as soon as he arrived but it didn't seem to help his fears about getting his blood work done. He was only having a finger poke but he put up such a terrible fight. When we were almost finished the nurse dropped the container with his blood so we had to do another finger poke. It took so long to get the blood from him that it clotted and we had to draw the blood from his arm. Needless to say he was very aggressive and we had to force him to stay still. He was very upset and angry and I don't blame him but our goal here is to get him to accept the fact that this has to be done no matter how scared he is. And I know that he is very capable coming to that realization. So next week we are going to try telling him that if he does the same thing that I have to leave. Having mummy there is very important to him so maybe if the possibility of me leaving is there he will be able to somewhat control his fear. Once we show him it is possible to have his blood work done without a fuss then it should get easier for him.
His Dilantin level was 40 this time which is the beginning of normal but they will repeat that before we leave for Disney world. His platelets are a little low and this could be because his bone marrow is tired or because of the dilantin.
His leg needle went much better. There is not as much trauma attached to his leg needle as the blood work....
Other than the fact that he is terrified of needles, chemo seems to be an accepted fact with him. He understands everything we do and why we are doing it. He is one smart little boy.
On the way home we went to Costco and stocked up on film for our trip and then made a quick trip over to Michael's Craft Store ( which Michael thinks he owns !!). He proceeded to chat with all the workers asking them if they liked working in his store... what a funny kid...;) Today we were actually home by supper time. His most favourite part about chemo days is eating at McDonalds....!!
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