Saturday, March 29, 2008

And with that, the induction phase is over...

Yesterday Michael and Jeff went to Syracuse for Michael to receive treatment # 10 which marks the end of the intense induction phase. I stayed behind as I had a lot of work to do at the office. Jeff said Michael's counts were good. But, he also said Dr. Kennedy commented during his physical that all of Michael's reflexes are gone. She did a new neurological test on the muscles in his legs and said that they still look good though.

Michael is feeling very well today. He has had no nausea and even ate a big breakfast. Jeff said that Michael ate almost nonstop on their trip to and from the hospital yesterday. In fact, he was afraid that he was going to run out of snacks in the bag! They also arrived at the hospital early so that they could eat lunch in the cafeteria before heading up to the oncology unit. Jeff is working days today but I have a feeling when I talk to him he is going to tell me that they "dripped" Michael's meds yesterday. I can see the difference in him. He is not sick like he was the last two weeks when they changed their routine and "pushed" his meds.

Michael and I have a surprise project we are going to work on today. I will post details and pictures when we are done. We may also go over to the YMCA later to practice swimming since he is feeling so well. There was an announcement in the local paper that the ice cream shop down the road opened yesterday so we can stop on the way home for the first ice cream cone of the season. (Although that seems pretty silly since it snowed on and off all day yesterday and the ground is all covered in that yucky white stuff again.)

Michael has the next two weeks off from chemo but I will post periodically to let everyone know how he is doing. Please keep Michael in your thoughts and prayers, JoAnne

Thursday, March 27, 2008

Michael saw a sure sign of spring today...

Michael and I went grocery shopping tonight. On the way home, Michael noticed that the local ice cream shop that had been covered with plywood for the winter was uncovered. He knows that that means they are getting ready to open and he can't wait for the first ice cream cone of the season!

Michael has definitely felt better the last two days. He has eaten pretty well and has a lot more energy. He also fell asleep fairly easily last night and slept the whole night through. Tomorrow is the last treatment of the induction phase of chemo and then he will have two weeks off. Let's hope this treatment goes easy on his poor little body and that he builds up some strength during his break. Please keep Michael in your thoughts and prayers, JoAnne

Tuesday, March 25, 2008

I finally talked to the doctor from Boston...

Shortly after Michael and I got home tonight, the phone rang. It was a doctor from Dana Farber in Boston. Last week, I tried calling the women I had been dealing with and found out that they no longer worked there (I guess that is why they weren't returning my calls). So, I made contact with a new person and decided I was going to make a pest of myself until I finally got some answers and it worked.

Dr. Betsy Harrington called tonight and said that they did review Michael's case when we sent it to them. She stated the team of doctors in Boston concur with the notes from Michael's team in Rochester. She said that their pathologist diagnosed the tumor as a "ganglioglioma with entrapped neurons which makes it an astrocytoma". That is not what I understood the definition of an astrocytoma to be. I thought there was a difference in the cell structure and shapes of both types of tumors. But, the "entrapped neurons" part of the diagnosis is the same terminology used by the pathologist in Rochester. I am going to request a written copy of the pathology report from Boston tomorrow and do a little more research.

Dr. Harrington also said that if we had gone to Boston, they would have recommended the chemotherapy regimen we have chosen to do, Carboplatin and Vincristine. She added that their neurosurgeon thinks that there might be an option of surgery after chemo to attempt to remove the remaining tumor. Michael's neurosurgeon, Dr. Pilcher, had said the same thing after Michael's craniotomy. So all in all, it was reassuring that Boston agrees with the treatment path we have chosen.

Michael is scheduled to have his next MRI April 10th in Rochester. Dr. Harrington offered to have Boston's team review this next MRI if we would like. Jeff and I decided we will send it to them and see what they say.

Michael is still having a terrible week. Yesterday was Jeff's day off and he and Michael spent the day together. Michael was sick most of the day. He was sick again this morning so I continued giving him his Zofran (usually he only needs it all day Saturday but has been taking it since Friday this week). About an hour later he felt well enough to eat some breakfast and then go to daycare so that I could go to work. Today is the first day he has eaten anything and according to our scales this morning, he has lost two and a half pounds. He is still having trouble sleeping, too. I have to say, this has been the worst week Michael has had since starting chemo.

Given how he has felt all week, I gave Michael the choice tonight of going to soccer practice or not and he chose to go. So we went but it wasn't a very good night. Michael had very little energy. He either went up and down the field very slowly or just kind of stood off to the side. After about a half hour (practice is 45 minutes) I asked Michael if he wanted to leave and he said yes, that he didn't feel good. So we left. Hopefully next week will be a better week. I decided tonight that I am not going to sign Michael up for the soccer league I had thought about. There will be other sessions and I don't want Michael to get too run down. Besides, swimming lessons are his favorite and I would like to keep advancing up the levels in those.

An interesting side note about Michael's anti-nausea medicine - a 90 day prescription costs $1,540. If we had to buy that at the local pharmacy, it would cost us 25% or $385. Lucky for us, our medical insurance got a new mail order drug company this year and it will only cost us $35. Before all this, I never appreciated how important good health insurance really is!

I would like to close this post by sharing a picture of Michael giving our bunny, Midnight, a physical. I am happy to report that "Dr. Michael" has declared Midnight fit as a fiddle. Please keep Michael in your thoughts and prayers, JoAnne.

Sunday, March 23, 2008

Happy Easter...

I hope everyone had a nice Easter. All my family that lives nearby came to our house today. It is the first time we have all been together in ages. Michael was so excited about having a "party" but unfortunately this was one of his worst days since starting chemo. He started throwing up before he was even out of bed. We gave him some anti-nausea medicine and his stomach settled down a bit.

He was finally able to get up and see what the Easter Bunny brought him. Michael got a dump truck shaped Easter basket full of candy (of which he hasn't eaten one piece), an egg shaped doodle board, a stuffed lamb and a stuffed bunny. Then he searched for hidden eggs (in the house since the ground is still covered with snow). In those, he found a couple of little Lego sets, some Bob the Builder toys, some marshmallow candies and a couple of dollars. And from Mommy and Daddy he got two new Thomas the Train engines. Michael also went to visit Jeff's Mom yesterday and got an Easter basket and some presents from her.

After checking out his Easter treats, Michael was sick again. We sat in his room together and both took a little nap (or at least I did). We've had some pretty restless and sleepless nights for the last week and a half. Hopefully after next week's treatment, things will get better. They say this first 10 weeks is the hardest.

My Dad came out around 11am to visit with Jenny for a while before dinner. Then just before 1pm my sister, brother-in-law and their family came. And finally Brian and one of his roommates, Matt, arrived. (Here is my Dad with the youngest member of our family, his great-grandson, Aiden). While we were eating dinner, Michael started not feeling well again. He didn't touch anything on his plate and then asked to lay down. We took his temperature and he had a low grade fever like the last couple of Sundays. So I took him to his room and put in a movie for him. He laid down on his bed and quickly fell asleep. He slept for a couple of hours and woke up while everyone was leaving. Before the other kids left (my niece's kids) we hid some candy filled eggs I had bought and had an Easter egg hunt.

After everyone was gone, Michael was really out of sorts. We tried again to get him to eat with no success. He laid down on the couch and almost immediately was sick to his stomach. So, we gave him some more Zofran. Then, he and I sat in his rocking chair and watched the "Little Mermaid". After about an hour, the anti-nausea medicine started working and he had a couple of popsicles. And finally, he asked for a bagel with cream cheese "clumped up on it". He ate half the bagel and most of a banana. And that's about all he's eaten for the day. And yesterday wasn't much better. He is getting very thin. I don't think he has lost much weight but he has gotten taller so he is definitely thinner. Jeff and I agreed tonight that his hair is getting a little thinner.

Michael said tonight that he had a nice Easter but I wish it could have been better for him. He did enjoy his time with his big sister as always (here they are enjoying a book together). And he got to talk to both his Aunt Denise and Aunt Debbie (Jeff's sisters) on the phone tonight. I will let you know how he feels in the next couple of days. Keep Michael in his thoughts and prayers, JoAnne

Friday, March 21, 2008

There's just one week left in the induction phase of chemo...

We are back from Syracuse where Michael received treatment # 9. It was just Michael and I today. Daddy had to work. And judging by the number of Canadian cars traveling south with us, he must have been very busy.

Everything went well. Michael's ANC counts were over 3,000 today so Dr. Kennedy was pleased. (Those are the numbers that were 500 just a couple of weeks ago.) She also commented that over half Michael's white blood cells were neutrophils so she was doubly happy. Michael was very good when they removed the needle from his port. I talked to Dr. Kennedy about the temper tantrum last week and the insomnia. She said she never heard of those side effects with the new antibiotic Michael is getting but that every drug can affect everyone differently, so it is possible. She said we will see what happens when he gets it next month.

The sun was shining brightly today and we saw plenty of wildlife on the way to the hospital (thankfully all safely on the side of the road). Our favorite sighting was three baby deer. They were even smaller than the one that was hanging out in our backyard a couple of weeks ago (pictured right). One of the baby deer was curled up sleeping and the other two were eating. Michael thought they were out enjoying the springtime weather, too.

Michael was a little chatterbox talking all the way to Syracuse. One of the things he asked me is if I had a "bad thing" in my head when I was born too. I told him no, that I didn't. He said he was glad because he wouldn't want me to have to have a port and get medicines. But he never asked "why me". He was only concerned that I was okay. (And I didn't cry!)

Michael got an Easter basket at the hospital today (pictured left). There was a beautiful, soft and cuddly stuffed elephant, some toys and a bunch of candy in it. The bucket was even Michael's favorite color, green.

We also had a nice surprise this week. My co-workers and friends had a 50/50 raffle for Michael to help with some of our medical bills. My sister also sold some of the tickets at her work. Between ticket sales and donations, they raised quite a bit of money for us. And the gentleman that won the drawing donated his winnings back to Michael also. (Thank you Jim.) We had the drawing at lunch time yesterday and I was able to hold back the tears for a couple of hours.

Tammy and Cheryl from Make-A-Wish came last night (or Michael's "wish girls" as he calls them). They are still trying to find where Michael can see Darby so there aren't any final plans yet.

Jenny and Ralph just got home for the weekend. Jenny brought Michael some new pets. There is a little house with caterpillars that will turn into butterflies (they look like worms to me). Her science class was growing them for a class project and she thought Michael needed some.

This is Jenny's first chemo day home and she is getting to see first hand what the "Benadryl grumps" are. To me this is just a typical Friday. I find that as the weeks go by, I continue my transformation into a mother of a seriously ill child and find it is harder to recognize the person I was before last summer. Things that were completely foreign to me a couple of months ago are "normal" now. Since I can't change what is happening, I guess this is a good thing. I will post again in a couple of days. Happy Easter to everyone, JoAnne

Thursday, March 20, 2008

I can't sleep, so here I am...

Sleep is eluding me worse tonight than most nights so I thought I would use this time to update you on how Michael's week has been going. Chance (pictured left in a photo taken by Michael) couldn't sleep either so I think she is glad for the company. She is now laying very contently on my feet.

It's funny- this blog started as an efficient means to keep distant family and friends updated on Michael's progress. Then, when we found out Michael had to start chemo, I decided to continue it as it could serve as a sort of diary for Michael when he is grown and this ordeal is long behind us. But, now it has evolved into a therapeutic outlet for me. I have found that I look forward to writing about the little boy that is so special to me and I hope there are at least a couple of people that enjoy reading about him.

Michael's week, so far, has been a little different. For the first few days, he had a terrible time sleeping. Usually, he falls asleep during chemo, sleeps all the way home, has a lite dinner and then is out until the next morning. Not this week. Last Friday, he only slept for the last half hour or so of chemo, was awake the whole ride home and couldn't fall asleep until almost 11 pm. I don't think Michael has ever been awake later than 9 pm his entire life - and even that is rare. He just couldn't fall asleep and kept wandering out of his room. He wanted to sleep but just couldn't. He finally took a pillow and a blanket and laid on the living room floor around 10:30 pm and drifted off to sleep. Then Jeff carried him into bed - where he didn't stay very long.

Around midnight, he came into our room and climbed into bed. There, he tossed and turned, cried and complained all night long. Jeff finally went out and laid on the couch to see if giving him more room would help. It didn't. I thought for sure Michael would be exhausted and would take a long nap Saturday but no such luck. And, the next four days and nights were basically the same routine. Last night he actually fell asleep early while I was reading him his bedtime story. The good news is he has had absolutely no nausea this week. Jeff and I were discussing why there was such a difference this week. There were two things that we came up with that were different about chemo last Friday and we don't know if they could be the reasons.

First, they gave Michael the new maintenance antibiotic in his IV. The whole time he was getting this new drug, they were taking his blood pressure and pulse (which they don't usually do). It didn't occur to us to ask why they had to do that or if there were any side effects until after we were home. The good news is that there is always another Friday right around the corner where we can ask the questions we think of after we leave the hospital. We wonder if maybe the drug has hyped him up somehow. That could also help explain the combative behavior that was so out of character at chemo last week.

The other thing that was different was that they "pushed" one of the anti-nausea drugs that they usually "drip". I am not sure why they did that other than I think each nurse may have a little different routine and Michael had a new nurse last week. We were wondering if since the "bad" drugs are harder on the body when they are given quickly, if maybe the "good" drugs are "stronger" when given quickly also. (Disclaimer-keep in mind that these are the thoughts of 2 overwhelmed, laymen parents trying to make sense of something that doesn't make sense to us.) Oh well - I will ask this week.

Other than what I stated above, it has been a pretty good week. We went to soccer Tuesday night and Michael did great. He and the little girl from his class, Charlize, have become buddies. The kids are learning to control the ball a little more and to follow the commands of the coaches. Michael has done well with both skills. He really enjoys soccer and there is a "league" that starts up after these classes are done. I am debating whether to let him play or not. The class he is in now is just drills. They don't actually play a game. If he played in the league, they actually play soccer and there would be a lot more chances of colliding with another player and I worry that he could damage his port. Dr. Korones said there were no restrictions on Michael and in fact, one of his patients plays hockey. I have been trying real hard not to let this disease rob Michael of a normal childhood so this is a real dilemma for me.

Then last night was swimming lessons. Michael really has taken to the water and is doing well. Brian joined us but I am not sure if it was to watch Michael or to see Michael's teacher. When I first met Michael's swim instructor, I thought of Brian immediately. So the next time I talked to him, I jokingly told him he should come to swimming lessons with us and meet her. I thought he might like her. Turns out he already knew her and I was right about her being his type (a mother is always right). Whatever his reason for coming, we enjoyed his company. Brian turned 23 Tuesday night. So, we had dinner after swimming lessons and then I gave him some "home cooked" leftovers that were in the fridge and his gift. He played with Michael for a while and went back to his place. The picture to the right is Brian and Michael playing a memory game on the Thomas the Train website last week. Both Brian and Michael have gotten haircuts since that picture. Brian was trying to grow his hair long but changed his mind. I told him that was a good thing since his sister would have made him get it cut for the wedding anyway.

One good thing about soccer and swimming lessons is that Michael always seems to eat better after we get home. I don't know if it is because of the increased activity or if he just feels better by Tuesday night. Either way, it is a comfort to see him eat at least one good meal after a few days of eating almost nothing.

Tammy and Cheryl from Make-A-Wish are coming back to the house tonight to talk to Michael some more about his wish. He has been telling everyone that will listen for the last week that he is going to Disney World to meet Darby so I think that is what we will be doing. In fact, last night he asked me if he had to go to school and if I had to go to work the day after tomorrow (Friday). I told him "no", that we could spend the day together. Then he asked if we could go to Disney World that day! I tried to explain to him that this is a big trip and will take a lot of planning. He tried to explain to me (very patiently, I might add) that he was ready to go and we didn't need to do any planning. He doesn't understand why we can't just get on the plane and go. Oh boy - it's going to be a long wait.

Well, it is almost time to get ready for work. I think it is going to be a long day that is going to involve lots of caffeine. I will post again Friday night. Please keep Michael in your thoughts and prayers, JoAnne

Sunday, March 16, 2008

It's a typical Sunday...

Michael really hasn't eaten much since Friday night. We ask him what he wants to eat... make him all his favorites... he gets excited and comes to the table but then just has no appetite. He says everything tastes funny. He doesn't seem to have any nausea this weekend though, so that's good. Yesterday, he had a bowl of cereal around 5pm and some ice cream and half a brownie around 7pm. And that was just about it for the day. I think we are entering the "Anything That Has Calories That We Can Get Past His Lips Is A Balanced Diet" phase of chemo. Today isn't look much better.

Michael also has a stuffy and runny nose and he said he just doesn't feel good. Jeff took his temperature a little while ago and he has a fever of 99.8 degrees again. Maybe the fever is just going to be our regular weekend after chemo routine. Michael and I were coloring a little while ago and he kept shaking his hand. I asked him what was wrong and he said he had "that sand feeling" in the tips of a couple of his fingers and was trying to wake them up. And we can thank the Vincristine for that little side effect.

Yesterday, Michael had plenty of energy (in spite of not eating). We painted our den (a.k.a. Brian's old bedroom) and he was a big help. Usually with those type of projects, Michael helps for about 20 minutes and then gets bored and abandons us in favor of playing with his toys. Yesterday, he took one short break and then helped us the rest of the time. So, if you come to spend the night in our den and you see some "brush marks" on the wall, we hope you will understand that it is the product of a wonderful family afternoon.

We are going to spend a quiet day at home today. Which is a good idea since it is snowing like crazy again today. My Dad just called and is on his way to see us - something he has done almost every Sunday since we lost my Mom 4 years ago. Please keep Michael in your thoughts and prayers, JoAnne

Friday, March 14, 2008

Spring is in the air...

Today was a beautiful day here in the north country. The sun was shining brightly all day. The drive to Syracuse was nice for a change. Even Michael commented on how good the sunshine felt streaming in the car windows. Here is a picture of Michael in his car seat, ready to make our weekly jaunt to Syracuse. You'll notice from that big smile on his face, he has no apprehension whatsoever.

Our appointment was in the morning this week and things seemed to progress more smoothly than our typical afternoon appointments. Michael told the nurse that was taking his vitals that his port has been hurting "a little" for the last couple of days. She told him she understood because sometimes her port "just hurt" and proceeded to show him her port. It was nice since she is the first person that Michael has talked to that also has a port. She checked his site really well and said everything looked fine, which was a relief.


Next, one of the nurses accessed Michael's port and drew some blood for his lab tests. Everything came back great. All of his counts were back up where they should be. I had a feeling they would be up this week since the last couple of days have been wonderful for Michael. His energy level and appetite were both great. Dr. Kennedy had called on Monday and told us to stop giving Michael the maintenance antibiotic, Bactrim, so we did. She feels that the Bactrim could have been suppressing his bone marrow and keeping his counts down. She said from now on, Michael will receive an antibiotic intravenously once a month. The only downside to that is that it will add an hour to his treatment on the weeks he gets the antibiotic.





There was a pizza party for lunch in the oncology unit. We also had cake in celebration of today being the last treatment for a 3 year old little girl (after 60 weeks). Then Michael settled in and watched a couple of movies.

Michael receives Benadryl through his IV for nausea and it makes him sleepy and grouchy. The nurses call it the "Benadryl grumps". One of the nurses said Michael gets them about as bad as any kid she has seen (not a good thing). In fact, today he had fallen asleep and woke up when his treatment was done. It took 4 of us to hold him down so they could remove the needle. I hope that doesn't happen again!

Michael ate almost nonstop while he was getting his treatment today (while he was awake) and then he asked us to stop and get some chicken nuggets and fries on the way home. I will post again in a couple of days to let everyone know how Michael is doing. Please keep him in your thoughts and prayers, JoAnne

Monday, March 10, 2008

You'll never guess what Michael wants for his wish...

The ladies from Make-A-Wish, Tammy and Cheryl, came to the house tonight. They brought Michael a toy dump truck and a tool set. Then they spent a couple of hours talking to and playing with Michael. They were great. They brought a notebook entitled "Michael's Wish Book". Cheryl had Michael draw pictures to answer a series of questions.

The first question was "If I could be anything, I would be..." Michael's answer was a construction worker and a firefighter. No surprises there!

The second question was "If I could have anything, I would like to have..." To this question, Michael answered a bulldozer, a snowplow, a front-end loader and magnetic letters. I'm not sure how the magnetic letters fit in.

The third question was "If I could go anywhere, I would go..." Michael's answer was he would like to go to Stowe, VT. Stowe is where we go on vacation every summer and he really enjoys it. We stay at a resort and do absolutely nothing but swim, play, go for walks, site-see, etc. I think this was a hard question because at 4 years old, Michael doesn't know a lot about geography and all the wonderful things there are to see in the world.

And, the last question was "If I could meet anyone, I would like to meet..." Michael would like to meet Darby from "My Friends Tigger and Pooh". That wasn't a big surprise either. Michael says Darby is his girlfriend and he talks about her all the time. (She is the little redhead in the picture to the right.)

Then Cheryl gave Michael a star sticker and told him if he could have a secret wish - a big wish for anything in the world - which one of the things he drew in his book, would he like to be, have, go or meet the most and he put the sticker next to meeting Darby. Since Darby is a Disney character, Tammy and Cheryl told us about the special program they have at Disney World for Make-A-Wish kids. Cheryl explained to Michael that Disney World was a special place where all the cartoon characters lived and he got pretty excited. He came over to me and asked if he could tell me a secret and I said sure. He whispered "I'm going to meet Darby."

Soooo... It looks like we could be going to Disney World. Jeff & I are both shocked. We never, in a million years, thought he'd choose Disney World. We thought for sure he'd be riding construction equipment somewhere! There is only one hitch - Darby is a relatively new Disney character (just since last fall) so they don't know how much there would be of her character at Disney World. Tammy and Cheryl are going to look into it. They also want us to talk to Michael some more over the next couple of days to make sure that is really what he wants. I'll keep everyone posted. JoAnne

P.S. Michael felt better today. He still didn't eat much but he went to school and didn't have any problems.

Sunday, March 9, 2008

The ladies from Make-A-Wish had to reschedule...

The 2 wish granters from Make-A-Wish are from Central New York and they are getting the stormy weather and power outages we got yesterday. So, they rescheduled until tomorrow night.

Michael is still not feeling well. He usually only has to have his Zofran (for nausea) for 24 hours after a treatment. But, he can also get it "as needed" and he was pretty sick this morning so I am giving it to him again today. Keep him your thoughts and prayers, JoAnne

Saturday, March 8, 2008

Have I mentioned I am tired of winter?...

The terrible weather we struggled with yesterday, continued today. We have had a freezing rain/sleet/snow mixture all day. And around 3:00pm this afternoon, we lost power. Jeff is on the midnight to 8:00am shift this week so he only got a couple of hours sleep yesterday (he insisted on going to chemo with us). He also worked 4 hours overtime today, getting home around 12:30pm. He and Michael shoveled the driveway, then we had a nice lunch and then he went to bed. So when the power went out, I didn't want to wake him to start our generator. I was hoping it would be a short power outage. I was wrong.

Around 5:00pm it started getting dark and cold, so I reluctantly woke Jeff up. He had a problem getting the generator hooked up to the house and our friend and neighbor, Jeff, had to come over to help. They just got it figured out around 7:00pm, when the regular power came back on. Hopefully he won't be too tired as he is working a 12 hour shift again tonight (well, actually 11 hours with the time change). When you are being billed by 4 different hospitals, a couple of labs, half a dozen doctors and your kitchen could pass for a small pharmacy, the overtime comes in handy.

Michael didn't have the best day today. He woke up at 4:30am sick to his stomach. Thank God we had gotten all the buckets back out yesterday and strategically placed them in all the rooms of the house. We had put them away since he wasn't nauseous the last 3 weeks when he didn't get the carboplatin. He also had a low grade fever again today (99.8 degrees, again) and he didn't eat hardly anything. I know the saying goes "man cannot live on bread alone" but let's hope little boys can live on rice krispies, bananas and bagels with cream cheese. His eyes just looked so tired today and he didn't have much energy.

I am really glad he had a break from the nausea and fatigue the last couple of weeks. Hopefully that will give him the strength he needs to get through the next 3 weeks (then he has a 2 week break). Yesterday while Michael was getting his treatment, he was sitting in the recliner with Daddy and they were both sound asleep. I was just watching the medicine drip into his IV and thinking "that is pure poison going into his little body". I know he has to have the chemo to help his body fight the tumor in his brain but as his mother, I have a hard time not feeling guilty for letting them do it. Especially when he is showing no symptoms from the tumor and the chemo makes him so sick.

I want to thank Jenny for sneaking on here today and posting the videos she took last time she was home. I had taken some with our video camera but none of us can get them to load onto my computer. So, Jenny took some with her digital camera when she was home last weekend. The first video is the "Hot Chocolate Song" that Michael is now famous for in Unit 5C at University Hospital. The second video is a current country song he hears on the radio but just doesn't have the words quite right. It is hilarious. If you can't understand what he is singing, post a comment and I will post his words. Otherwise I will let you listen for yourself. I don't want to spoil the "punchline". You're all lucky there are only 2 videos. This morning, on the phone, Michael serenaded my sister for about 10 minutes before I finally took pity on her and took the phone back.

I will post again tomorrow night. (Unless we lose power again as it is still storming.) Please keep Michael in your thoughts and prayers, JoAnne

Michael's Singing Debut

The Hot Chocolate song he learned at school...
video

And Michael's version of Tim McGraw's "Last Dollar":
video
The lyrics really go "One, two, three, Like a bird I sing, cause you've given me the most beautiful set of wings." I like Michael's version better.

Friday, March 7, 2008

We have another week under our belt...

We made out weekly trip to Syracuse today. Michael's counts were still a little low but rising. Dr. Kennedy said in the next 2 days his neutrophils should be back up where they should be and it should take that long for the carboplatin to suppress his bone marrow again so she gave Michael his treatment today. He did well.

We arrived at the hospital around 12:30pm and grabbed some lunch in the cafeteria before heading to the oncology unit. After we checked in, Britney (the child life specialist) showed Michael a table full of stuffed rabbits, chicks and lambs in various sizes and colors. She invited Michael to pick one out for his own. His picked a soft, floppy white rabbit with a blue ribbon that he has named "Rabby".

The nurses were running a little behind so Dr. Kennedy came out to get Michael for his physical. Everything looked fine. Dr. Kennedy said the fever Michael had last Sunday and Monday may have been from a virus and could have contributed to his low blood counts. Then the nurse came and took Michael's vitals and accessed his port. As Dr. Kennedy was leaving the exam room, she told Michael he needed to pick out a tooth brush. Michael was nervous that he was going to have to brush his teeth right then (and that is really a battle right now with his sore mouth). But, instead Britney showed him a huge Easter basket somebody had brought in full of candy and dental stuff. Michael picked out a Transformers tooth brush and Winnie the Pooh toothpaste to bring home.

As we were walking down the hall from the exam room to the treatment room, we passed the microscope room, where Dr. Kennedy was looking at slides of Michael's blood. She invited him in to have a look, too. Michael was thoroughly fascinated. Dr. Kennedy looked through her microscope, which contained the slide, and Michael could look through the eyepieces of a second microscope that was attached. Dr. Kennedy then used lighted arrows to point out different things and explain them to Michael. She showed him his neutrophils, leukocytes and monocytes (or white cells) and his platelets (or red cells). I wish I had had my camera as it was an incredible sight to see Michael sitting next to Dr. Kennedy, looking through a microscope so intently!

We then settled into the treatment room but we had to wait awhile for the "official" blood counts to come up from the lab (since his counts were still on the low side of things). While we were waiting, Michael watched the "Stuart Little II" movie that Aunt Florie had sent him that he didn't watch last week (since he didn't receive his treatment). Britney came in and told Michael that she has a cousin that owns a construction company. She said she told her cousin that she knew a little boy that loves construction equipment so he gave her a T-shirt for Michael with a trachoe on it.

Then Dr. Kennedy gave the okay for chemo to begin and around 2:30pm, they began his meds. They gave him his Benadryl first and Michael promptly fell asleep. And except for taking his medicine and eating a bowl of cereal around 7:30pm, he is still sound asleep. Hopefully he will sleep through the night.

It was after 5:00pm when we left the hospital and we drove through a terrible storm from the hospital parking lot right to our driveway. I will be so glad when spring finally gets here! If there is nothing new to post tomorrow, I will post Sunday night and let everyone know how the Make-A-Wish interview goes. Please keep Michael in your thoughts and prayers, JoAnne

Thursday, March 6, 2008

Meet the man steering Michael's ship...


The internet is an amazing tool. Tonight I was searching for articles on pediatric brain tumors and children fighting this disease. I came across the website of a mother of a 2 year old fighting kidney cancer. Her son has the same oncologist as Michael, Dr. Korones (pictured right). She had linked to an article Dr. Korones had written in 2003 about his views on the doctor-patient relationship. I will admit, it took me a while to read the whole article through my tears. After I finished reading and dried my eyes, I decided I wanted to share it with all of Michael's readers.

Dr. Korones is one of the most caring and compassionate doctors I have ever had the good fortune to meet. And considering the challenges and responsibilities he faces every day, he is an unwaveringly positive and optimistic man. Click here to read in this amazing man's own words what his patients mean to him. It will give you an insight into this talented doctor better than my words ever could.

Wednesday, March 5, 2008

It's been a pretty good week...

Michael has had a pretty good week. The fever he had Sunday afternoon broke early in the evening. Monday, Jeff & I went to work like normal. Michael went to daycare in the morning and then it was off to school after lunch. Shortly after Michael got off the bus, I received a phone call from the school nurse saying he was having a bad day. I was concerned because she said he had a fever of 99.9 degrees. He was crying and asking for me so I went and picked him up. (BTW- the school nurse thinks Michael is a "pip" and one of the smartest 4 year olds she has ever seen.) We came home, had a quiet afternoon and his temperature went back to normal. And, thankfully it has stayed that way for the last couple of days.

Michael's appetite has been better the last couple of days than it has been in a couple of weeks. What a relief! I am sure his appetite will decrease again after his treatment on Friday but at least he had a couple of days of hearty meals. He still complains that some things taste funny but it is my understanding that is not unexpected. He is also having a terrible time brushing his teeth. He says he can't open his mouth but I think it is more that his teeth and gums hurt when he brushes them.

I spoke to the nurse case manager from our insurance company yesterday and she said that when she worked in a pediatric oncology unit they had "toothettes" for the children. They were sponges on a stick and were gentler on their little mouths. She is checking with some medical suppliers to see if she can get some for us. I just don't want Michael to get any cavities and have to have dental work on top of everything else.

Tuesday night Michael started playing soccer. It is a 6 week program at our local YMCA for 3 and 4 year olds. He played in this program 2 years ago also. The first night started out slowly. Michael didn't join in with the other kids and was just kind of moping around. We were just getting ready to pull him off the field and take him home when a little girl took him by the hand and got him to join in. We found out later that she was a little girl from his Pre-K class. She kept her eye on Michael for the rest of the class and made sure he was never too far from her. It was so cute to watch. Michael perked right up and started playing with all his little heart.

After soccer, we made a stop at our local Home Depot. Jeff and Michael went off to have a key made and I was looking at some moldings. Next thing I know, I hear "would Jeff & JoAnne please report to aisle 28 near the mill work" over the loud speaker. I went a couple of aisles over and saw Michael standing with a handful of Home Depot employees, looking absolutely pitiful. He wandered away from Daddy to find me but I wasn't where they had left me. I don't think he will try that again!

Michael had his second swimming lesson tonight and he really is a natural. He just loves swimming! The instructors had the kids swimming all over the pool and Michael did so without hesitation. They had "floaties" on their backs and "noodles" under their arms but he was kicking and paddling up a storm.

It is back to the full chemo treatment on Friday. Let's hope his neutrophil counts are back up to acceptable ranges. I will post and let everyone know how it goes. Also, we received a call from Michael's "wish granters" tonight and they are coming to meet and interview Michael Sunday afternoon. I am anxious to see what his wish will be. We haven't talked to him about it too much because we don't want to put any ideas in his head. We want the wish to be exactly what he wants. Please keep Michael in your thoughts and prayers, JoAnne

Sunday, March 2, 2008

We're watching Michael closely today...

Michael has a low grade fever today (99.8 degrees). I just spoke to the doctor on call for Dr. Kennedy. He said to keep an eye on him and if his fever goes to 100.5 degrees or higher, to bring him to Syracuse and they would check his ANC counts. If they are still above 500, we could come home and continue to watch him here. If they are below 500, Michael would be admitted. So... let's hope his fever doesn't go any higher.

Michael woke up from a nap a little while ago and had a couple of Popsicles. He doesn't act like there is anything wrong and he isn't showing any symptoms of coming down with anything. He's now playing quietly with his Bob the Builder toys on the living room floor while "Bunnytown" is on the TV. "Bunnytown" is one of his favorite shows. They do a lot of singing and dancing which Michael loves.

Jenny was home this weekend but headed back to New Jersey this morning after we went out to breakfast with Pop Pop (a.k.a. my Dad). Michael and Jenny enjoyed their time together as always. They made a 3-D Easter egg decoration yesterday and played a bunch of games. And this morning, Michael painted a big picture for Jenny to hang in her new classroom. She is a special education teacher in a middle school.

Jenny and her finance, Ralph, are getting married on August 9, 2008 at The Sherwood Inn in Skaneateles (which is down by the Finger Lakes). It is going to be a beautiful wedding. Michael and I are planning a candy buffet for the reception. We are having a lot of fun with it and have been buying jars in all different sizes and shapes. We plan on decorating them with all sorts of ribbons and Michael and I have searched the internet for all types of blue, ivory and brown candy (the wedding colors). Michael doesn't care too much as long as there are plenty of peanut butter cups! And, I have to admit it is nice having something fun to think about to take our mind off of things sometimes.

Yesterday we went through my hope chest to find things I had saved from my first wedding. Jenny took my wedding dress and removed all the lace. She is going to dye it to match her dress (which is champagne colored) and give it to Ralph's grandmother (who is a seamstress) to make a veil for her. And I removed all the pearls from my dress to add to a wedding sampler I am embroidering for her.

Michael had fun looking at some of the old stuff in the hope chest. There were a lot of things that Jenny and Brian had made as kids and some of their favorite toys. And, we found a Fisher Price wind up radio that was mine when I was a little girl and Michael thinks that is the neatest thing. It is 40+ years old and still works. (Probably better than I do some days!)

I will keep everyone posted if there is anything new with Michael. Please keep him in your thoughts and prayers, JoAnne