Tuesday, December 30, 2008

A little bit of Christmas...

As I mentioned in my last post, we got a couple of feet of snow the weekend before Christmas but Michael didn't mind ...

... and after he spent some time outside shoveling snow with Dad ...

... Michael and I made some special Christmas ornaments. I know it is hard to see in this picture but we took some felt snowflakes and added some spray adhesive and iridescent glitter ...

... then we added some pretty heart charms and a sparkly ribbon ...

... and we were done ...

... and they were beautiful. We took several dozen with us to chemo on Tuesday as a small "Thank You" to Dr. Kennedy, the nurses and staff of 5C.

On Christmas Eve, we had a nice dinner. Brian, Jenny and Ralph came to spend the night so they would be with us at Christmas's first light. My Dad and Jeff's Mom also joined us for dinner.

Then there were some family Christmas traditions...

... such as the reading of "The Night Before Christmas" ...

... and a snack of cookies and milk for Santa and carrots for his reindeer before heading to bed.

Michael woke up at 4 am on Christmas morning and asked Daddy in a very loud "whisper" if it was time to get up yet. Daddy told him it was still very early and that we should wait a little while.

So, Michael settled back to sleep until 7 am before we finally got up and headed to the tree to see what Santa had brought.

Michael started with his stocking ...

... before moving on to his pile of presents. This was the year of Transformers and dinosaurs in our house. Michael also received some police and pirate Playmobil toys, a couple of Nerf guns, a remote control helicopter, some books and a Leap Frog tag reading system. And from Aunt Denise and cousin James in Alaska, he received a pile of presents including a pair of John Deere cowboy boots and a box of Alaska socks.

And of course there were a couple of boxes of clothes that included a new bathrobe.

There was organized chaos as everyone opened their presents and having all of my kids home on Christmas morning was the best present I could receive.

We were joined on Christmas day by my Dad (and his dog, Girl) and Jeff's Dad. During our Christmas meal, we used the Giving Tree we received from the Norfolk family as a centerpiece. And their brother, Patrick, was never far from my thoughts this Christmas season.

I'm sorry to say that Michael has been sick on and off since last evening. He hates taking his Zofran (for nausea) and has to be cajoled, bribed and browbeaten in order to take it. He always feels better after he does but he doesn't like the taste. I took it to our local pharmacy tonight and they flavored it watermelon (at Michael's request) so I am hoping that will make it easier for him to take.

We are planning to go to Upper Canada Village tomorrow afternoon (our previous plans got snowed out) but riding in the car seems to exacerbate Michael's nausea so we will see how he is doing tomorrow. Please keep Michael in your thoughts and prayers, JoAnne.

Monday, December 29, 2008

Another week done...

Michael and I had a good trip to Syracuse today. The weather was clear and chemo went without a hitch. Michael's platelet counts are still very low (34,000) but at least they haven't dropped any lower. Michael is bruising very easily. He bumped his leg on the corner of the coffee table last week and we actually watched the bruise form - it was that quick. Dr. Kennedy commented that the steroid, Predisone, that Michael receives with his chemo will help his body make new platelets and it makes me wonder how low his counts would be if he wasn't receiving the steroid.

Michael is pretty tired these days. We got home around 6:30 pm tonight and he was already asleep and we put him right to bed. He also fell asleep on the couch on Christmas afternoon around 4:30 pm and slept until 9 am the next morning. Hopefully all this sleep will do him some good.

Michael had a great Christmas (he wasn't sick at all) and I will tell you all about it in the next couple of days. We had gotten a couple of feet of snow the weekend before Christmas and heavy rain on Christmas Eve and on Christmas morning we woke up to a flooded basement. It seems that the drainage ditch in front of our house couldn't keep up with runoff and backed up into the special drainage system we had installed under our house when it was built.

The town is going to come and fix the ditch and we are going to move the outlet to our drainage system to a different spot so we don't have that problem again. We had a lot of junk down there that we wanted to get rid of so that we can put in a family room and I can tell you nothing motivates you to get rid of stuff like 2,000 square feet of wet, smelly junk. So, now we have a dumpster in our driveway and an almost empty basement. That is how we've spent the last few days so I will catch up with you and share our Christmas in the next day or so.

Please keep Michael in your thoughts and prayers, JoAnne.

Tuesday, December 23, 2008

A quick update...

Because of bad weather, we didn't go to chemo yesterday but rescheduled for today. Everything went well with chemo but we were told that Michael has a condition (not related to chemo) called Immunoligic Thrombocytopenic Purpura (or ITP for short).

ITP is where your immune system attacks your healthy platelets thereby making your counts low. The danger in this is that it can cause uncontrolled bleeding. Normal platelet counts are between 150,000 and 450,000. Michael's were 31,000 today. So now we have to watch for signs of bleeding (bloody noses, bleeding gums, excessive bruising, etc.) and be careful that he doesn't hit his head. Dr. Kennedy said that she isn't too concerned as long as his counts stay above 20,000. ITP goes away by itself in six months or less in 80% -90% of the cases with no treatment. Let's hope that is the case with Michael.

Christmas has started for Michael. The company I work for bought Michael a large Transformer which we stopped on our way to chemo for him to receive. He was thrilled! But that wasn't the end. He received a LARGE bag of toys at the hospital. There was a couple of tractors, a book, a 2008 Hess truck, a set of Matchbox cars, a stuffed shark and a Teddy bear.

I have been under the weather the last couple of days (either food poisoning or a stomach bug) so I am behind in my Christmas preparations. I will end for now and give you more details in a day or so, complete with lots of pictures. I hope everyone has a Merry Christmas, JoAnne.

Wednesday, December 17, 2008

We've met some Christmas angels...

We received a phone call last night from a gentleman who we had never met who had heard about Michael's story and had something he wanted to share with Michael. His name is Fred and he and his wife, Marlene, came to our home tonight to meet our family. Fred comes from a family of 11 children and he had one brother, Patrick, who lost a 36 year fight with a brain tumor in February 2007. To honor his memory, Patrick's family decorates a tabletop Christmas tree with gift cards and money which they then give to someone whose story has touched their hearts. This year they chose our Michael to be the recipient of the "Patrick's 2nd Annual Giving Tree."

Along with the tree, they included a card with Patrick's story in it. With their permission I would like to share his story with you in their words:


"Patrick Norfolk was our brother, uncle and friend from Watertown, NY. He was stricken at the young age of 11, and again at the age of 20, with a cancerous brain tumor and lived until the age of 47 struggling with the ill effects from the disease. Due to complications following the removal of his first brain tumor, Pat was in a coma for seven weeks followed by several months of speech, physical and occupational therapy. That Christmas, Pat received a tree from the community filled with cards and dollar bills. Throughout the years, Pat never complained and always saw the good in people. His favorite times were those spent with family and his favorite Holiday was Christmas.

Patrick left us on February 17, 2007 but he still remains close to our hearts. We want to keep his memory alive through the Christmas Holidays and what better way to do so but to return the same kindness that was bestowed on him in 1971. Please accept this "Giving Tree" in memory of our brother and friend, Patrick Norfolk, and know that it is given with the same love and compassion he exhibited throughout his entire life."

I think this is a wonderful way to honor their brother's memory and we are honored they have shared Patrick's story with us. Fred (pictured above with Marlene and Michael) told Michael that he has a tractor and he invited Michael to stop by his home in the spring for a ride. So, Michael drew Fred a small picture of a tractor while he was here. He has also drawn a couple of pictures since they left for the "next time" Michael sees them. I think they have touched our little boy's heart (and ours).

Like kids all over the world, Michael is getting really excited about Christmas. Friday is the Christmas party in Michael's class and Sunday we are making our annual trip to Upper Canada Village for their Alight at Night Festival. Monday it is back to chemo but it has been nice having this break right before Christmas. Please keep Michael in your thoughts and prayers, JoAnne

Wednesday, December 10, 2008

Catching up - Part III ...

I think we left off with my last post just before Thanksgiving. We had a nice dinner at our house with Brian, my Dad and Jeff's Mom. We had all the traditional fixings and Michael helped Daddy carve the turkey...

The next morning, Jeff, Michael and I had to be in Syracuse by 8 am for Michael's treatment. It was the last week in the fifth round of treatment. Michael's counts were still good and chemo went smoothly (although he was sick through the weekend again). Then, Jenny and Ralph met us at the hospital and when we were done, we went to a local restaurant and had a nice lunch together. Michael was still a little tired from treatment when we got to the restaurant but by the time lunch came, he had perked up and wolfed down a big plate of pasta.

After lunch, the five of us visited the Museum of Science and Technology. Michael had fun checking out the exhibits and then we went to see a showing of "Polar Express" at the IMAX theater in the museum. After the movie, Jenny and Ralph headed south to Ralph's parents in Binghamton and we headed north to home. Just like the previous Friday, the weather on the way home was terrible. (And like the week before - thankfully we made it home safely.)

Michael's class has been learning about admirable human qualities like respect and responsibility. And with each trait, the teacher recognizes students that exhibit those traits. This last week, they learned about bravery and Michael was chosen as a representative for courage. He was given a school bracelet and he was absolutely thrilled! He was so happy when I picked him up that night and I was so proud of him.

Last Saturday morning, we made another "fun" trip to Syracuse. The Pediatric Hematology / Oncology Unit had a Christmas party for the kids and it was incredible. There were crafts for the kids to do...

Michael made an ornament, a polar bear picture frame and a snowman decoration. They also had face painting and a DJ who got the kids singing and dancing. The kids wrote letters to Santa - Michael wrote that he wanted "transformers, a clam digger, trucks and dinosaurs." (We think a clam digger is a type of toy crane but we're not sure.) Then we had a delicious lunch of all the favorite foods of kids - fruit, chicken fingers, french fries and pasta. And for dessert, there were dozens of homemade Christmas cookies.

We also got to see Britney and some of our favorite nurses. Of course, the highlight of the afternoon was the arrival of Santa. There was also a professional photographer who took family portraits as well as pictures of the kids sitting with Santa...

It was a wonderful party and watching these children facing such a difficult time in their lives having fun was very heartwarming.

Tonight, we went to the Christmas concert for the kindergartners at Michael's school...

That's Michael in the middle of the front row with the black pants, light top and Santa hat.

The kids sang "Rudolph, the Red-Nosed Reindeer", "Frosty the Snowman", "All I Want for Christmas is My Two Front Teeth", "Must be Santa" and "Jingle Bells" with all of the enthusiasm of 5 year olds in their first concert.

The next couple of weeks will fly by quickly as we get ready for Christmas. Michael has a break from chemo until Monday, December 22nd. Let's hope he recovers by Christmas day. I may not post much between now and then unless something comes up. If you don't hear from me it means Michael is feeling well and we are enjoying the Holiday season (and the break from chemo).

Please keep Michael in your thoughts and prayers, JoAnne.

P.S. I was contacted by Golisano Children's Hospital in Rochester a couple of weeks ago and they asked me to write Michael's story. I did and submitted it to them. They want to use my little buddy's story in some of their fundraising drives. Tomorrow morning at 8 am, I have to call a radio station in Rochester to be interviewed on air as they kick off their radio-thon. Wish me luck!

Monday, December 1, 2008

Catching up - Part II ...

Last Monday, Jeff and I attended parent/teacher conferences at Michael's school. We are happy to report that Michael is doing well. He is right on track academically and his teacher said he is doing well socially. And, we couldn't be happier after the rocky start we had to kindergarten.

Here is my little bug's report card:

In the first column, the "plus signs" mean that Michal's skills and behavior are satisfactory and those areas are:

"Listens without interrupting, Works without distracting others, Works carefully and neatly, Plays safely, Is responsible for belongings, Shares, Raises hand to speak, Uses appropriate voice level, Keeps hands and feet to self and Holds scissors correctly".

The "up arrow" means that Michael is showing improvement in those skills and behavior and those areas are:

"Accepts teacher authority, Listens attentively, Follows directions, Works independently, Completes works on time, Participates in activities, Interacts well with others Colors neatly, Cuts accurately, and Traces patterns accurately".

And, there weren't any areas that needed improvements or there would have been "check marks" next to those areas. Yeah!

In the second column, Michael could have an "M" for Mastery (instantly recalls without prompting), "P" for Progressing or "N" for Needs Improvement. As you can see, Michael had all M's. He really is enjoying learning how to read. When we ride in the car or watch TV, he is always spelling out words that he sees and he tries to sound it out. If he can't, he always asks us what the word is. We also have some easy site reader books and Michael can read them all to me and he is just thrilled. And we are so proud of him!

The teacher's comment made Jeff and I chuckle (even though we know it is not funny). "Michael is adjusting to Kindergarten expectations. He exhibits attitude from time to time & wants things his way." Yeah, we knew that and are trying to change it but so far - we're not having much luck. And, considering all that he has been through in his young life, I'm not sure we ever will.

Please keep Michael in your thoughts and prayers, JoAnne.