1st Year off Treatment
August 20th.....
Blood counts wbc 4.27, hgb 139, neutro-polys 1.92, monocytes .48, platelets 215
He now weights 24.5 kg and is 125.5 cm tall. Michael has so much energy now and also an awesome appetite. Things are going very well.
We are also starting to wean him off of his dilantin as we feel the reason he was on it was only because of the side affect of the methotrexate he was on. If Michael is sick now we need to go to our family doctor unless we feel he needs to see an oncologist. We continue to go monthly for checkups at Cheo.
September 25.....
Blood counts wbc 4.59, hgb 139, neutro-polys 2.26, monocytes .44, platelets 225
Michael continues to do well. He is still weaning off the dilantin. We had a MRI as most kids do off treatment and are awaiting the results. We don't expect to see anything new. All is going great.
October 23.....
Blood counts wbc 2.74, hgb 137, neutro-ploys 1.35, monocytes .39, platelets 142
Michael came down with a fever on Saturday night and it stayed up just over 39 degrees all of Sat. and Sun. We went to the emergency to have him checked as he has just a couple of weeks ago gotten over an ear infection. Seems his ear is infected again and his throat is sore. We were worried about the fever as it wasn't coming down so we went to our family Dr. on Monday. He felt is was all viral and we didn't do blood work as he was being seen on Tuesday anyway down at Cheo. Cheo agreed.... viral origin and he should be feeling better by Friday or we repeat blood work. He is doing great (Friday) and has just a bit of a cough now. He was put on Biaxin for 10 days.
We also has a meeting with the surgeon to arrange a date to have Michael's port a cath removed. It would have been in 2 weeks if he didn't have a cold but the date for Deportation will be DECEMBER 3rd.... yeah!!!!!! We are all so excited.
Michael also now weights 25.8 kg and is 127.5cm tall. He has gained almost 11 lbs since he came off treatment. He is really enjoying being normal again.
Next month we have a lumbar puncture .... just part of the protocol to check... he has 2 more of them then he doesn't require another LP unless Cheo feels he requires it. This is awesome. I was surprised at Michael's response to this ..... he was sad.... said he liked them and wasn't glad that he wasn't going to have them anymore... this was a shock.. but then again that is the only part of treatment he didn't mind.
By DEC 1st we will be totally weaned off of the dilantin and so far we have had no signs of seizures. Come January he stops his pantamidine (antibiotic by mouth monthly) and he will be on no medications.
It is so nice to be off treatment. A bit worrisome but a very nice feeling.
December 18th......
Today's visit went well. Michael's counts are very good. His wbc is 6.53, hgb is 140, neutrophils are 3.08, platelets are 300 and his ALT is 9. He weights 26.7 kg and is 127.5cm.
Michael is progressing well and has basically been well except for a mild cold. He also had his port-a -cath implant removed on December 3rd which was a really big day for all of us. He was so excited going into surgery and of course he asked to keep his port-a-cath. After all, it was in his body for almost 3 years. So he says that it is his. He came through the surgery fine and stayed off of school for 1 week to give his body time to heal. If you know Michael you will know that he doesn't know the definition of relax and take it easy. So we home schooled him for a week and then he returned to school with no problems.
Being off dilantin has been good....no problems there either. The only thing is that we keep thinking we have to give it to him at 7pm.... it is like forgetting something and then we realize that he doesn't take it any more.
We are scheduled for an off treatment EEG on January 23rd which is just routine since he had seizures they need to follow him closely.
We do notice problems in school and with impulsitivity which is a side effect of the methotrexate that he had. He is being tutored on weekends to help him with his school work as he is still behind for his grade level.
But we do have a very happy , healthy boy and that is all that counts.
Since our appointment is in the morning we would have to wait to go to clinic for our off treatment visit until the afternoon which is just too long. So we are doing January's check up at our local doctors office and returning to Cheo in February.
January 15, 2002.....
This month we decided to do our monthly check up here at home. We are due to be down at Cheo for an EEG on the 23rd of this month in the morning but would have to wait around till afternoon for our off tx check up so we went ahead with it here.
Michael's blood counts are very good. His wbc is 6.8, hgb 136, platelets 199, neutrophils 4.15 and his monocytes are .48 plus his alt is 20. It is so nice to see all these counts higher than when he was on treatment. He always did carry good counts but this will give him that little extra to fight all those colds that are going around school.
We went to our doctors for Michael's exam. Everything is perfect. Even lymph nodes that were always present in his neck during treatment were all gone. He now weights 60 lbs and is 51 inches tall. This is nice because he was never higher in weight than height during treatments.
When we went for his blood work he had his arm accessed instead of his normal finger poke. I told him that there are no more finger pokes as we need to prepare for his upcoming lumbar puncture in March where he needs to have an IV inserted seeing he no longer has a port a cath. It went extremely well although he was afraid and a single tear rolled down his face...... he was so brave... I awarded him with a stuffed monkey that hangs around your neck for bravery.
The things that Michael continues to have to go through and conquer continue to amaze me. He can act very young at times but then there are those times where he is old beyond his years.
February 12 -
Our appointment today went very well. Other than being a very long day as we unknowingly were the last appointment and they were behind schedule... we never got our of Cheo until 5pm which Mikey wasn't impresses with because I had promised him a trip to the museum if he didn't give me a hard time..museum closed at 5pm... imagine how upset he was when he found that out. We were there since 1pm... not a fun afternoon. Plus the playroom and nintendo's were in quarantine because of a bad virus that was going around there so it was very boring for him waiting that long.
You can bet our next appointments will be the first on the list.
His blood counts were very good... wbc 5.09, hgb 132, neutro-polys 1.90, monocytes .30, platelets 193 and ALT 16. He is 128.5cm tall and now weights 27.8kg.
Today we had to have another arm draw done as he required too much blood to be taken for the finger. He was basically acceptant of it until he sat in the chair. He refused to give his arm over and then began shoving me away but I told him no museum if he didn't co-operate... good think he didn't know then that we would never make it. But he did give his arm and then he kept talking to the nurse, you could tell he was nervous as he kept forgetting what he was saying. I made him make eye contact with me as every time he looked at the needle coming to him his eyes got wider. I put my finger on his little nose and pressed so that he had to pay attention to what I was doing instead... well it worked .. needle was in and he was fine. Now next month we have a big test, he is having an IV inserted since he doesn't have his port a cath anymore and he is having a routine LP. This should be happening on March 21.
March 26th ~~
Today Michael had his second last lp. As usual it was late getting started. We never went in until 2:45pm and Michael was the second one. There was supposed to be a big snow storm hitting Ottawa and we were afraid that we would be caught in it but it wasn't as bad as they said and we were fine going home. Although traffic was very slow and it took us 4 hours to get home.. all went well.
His blood work was all good at wbc 5.85, hgb 148, neuro-polys 2.49, monocytes .40, platelets 189, and alt was 15. We left right away so we don't know what his lp results were but no news is good news and they would have called us if there had been a problem and no phone call so we assume the cns fluid was clear and colourless! And his weight and height are basically the same as last time.
Today was also the first time Michael had a procedure without a port-a-cath. Fran our favourite poke nurse and Robert our child life worker helped him out. He went off without mom and did it all by himself. So I am confident he has over come that fear now.
It was a long day but another procedure done and over with. Michael has his last lp in July.
His health has been remarkable. Colds that seem to be bad... go away as quickly as they came although he seems to be left with the sniffles quite often. Who knows maybe there are allergies lurking within him.. after all his sisters have allergies....
Oh yes, good news, not about Mikey though. His sister Ashley has outgrown her Anaphylaxis to milk proteins. That means she can eat anything she wants to. This has been fantastic for our family.. it is amazing how much food actually restricts what you can do.
Our next appt. is on May 21st at Cheo as we are doing every other month there and going to our family doctor in between. Our next appt. is April 19th bringing us to 9mths off treatment and doing great!!!!
July 25th.....
Well today was Michael's last lumbar puncture that he has to have according to protocol. They would only do a lp now if they see a reason to.
His counts were: wbc 7.48, hgb 132, Neutro-polys 4.14, monocytes .59, and platlets 245...and his cns fluid was perfect.
It is a good feeling to know the lp's are over. Now our next appointment we start to go every 2 months........
Here is a recent picture of Michael......
This photo was taken while Michael was at Camp Trillium in Picton, Ontario. This is his special friend Sharon. They were playing this game where they were supposed to feed eachother pudding without watching..... guess Mikey was cheating...... haha
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