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

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...


And Michael's version of Tim McGraw's "Last Dollar":

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.

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

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.

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

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