Friday, May 30, 2008

No chemo today...

Michael and I made our usual Friday trip to Syracuse but Michael was unable to receive chemo. Dr. Kennedy said that your platelet (red blood cell) count has to be at least 75 to receive chemo and Michael's was only 21. The good news is that the platelets he does have are large and healthy. So Michael just received his monthly IV antibiotic and the premeds that they had given him before the lab work had come back and that was it for today.

I was surprised that Michael's counts were so low since he was just coming off his 2 week break in treatments. And as it turns out, Dr. Kennedy was surprised also. She has a concern that Michael has developed a condition where the body produces antibodies that attack the healthy red blood cells. I guess only time will tell if that is the case or if he is just fighting an infection or such. I didn't ask a lot of questions since I won't worry about that specific condition unless Michael is diagnosed with it and then we will tackle it. I have enough "here and now" things to keep track of in my head without worrying about the "what ifs".

The staff of 5c couldn't believe that Michael was in the ER not once but twice this week. Michael told Dr. Kennedy that Daddy was thinking about putting him in a plastic bubble to protect him and Dr. Kennedy said that might not be a bad idea. She did tell me that we have to be watchful for any signs of internal bleeding (passing blood, severe stomach pains or headaches). Michael has quite a few dark bruises all over his body right now but that isn't anything new as he has been bruising very easily since he started chemo.

But the last couple of days he has also developed areas that look like rope burns and a whole bunch of pinpoint red dots. Dr. Kennedy said that these areas are capillaries under the skin bursting and are a side effect of the low blood count. He also had a slightly bloody nose the other day and today he had a hang nail that bled way more than a hang nail should bleed. Last night he fell asleep on the couch while we were getting dinner round 5 pm and slept until 7 am this morning. So I think it will be quiet activities (and NO running) until we can get those platelet counts back up. Please keep Michael in your thoughts and prayers, JoAnne

Wednesday, May 28, 2008

Do Hospitals Give "Buy 3 Get 1 Free Discounts"?...

Michael reopened the cut on his knee this morning so he and Daddy made another trip to the local Emergency Room. The doctor didn't stitch it up or put more Dermabond on the wound since it had already started to heal. He did put a bandage on it though and then wrapped it in both gauze and an ace bandage. Now Michael has no choice but to keep his leg straight all the time. But, hopefully that will keep the cut from opening again and give it a chance to heal. Uncle Jeff told Michael tonight that he looks like a pirate with a peg leg! Let's hope that is the end of our excitement for a while. After all, 4 ER visits in 4 months - can a visit from Child Protective Services be far behind? Please keep Michael in your thoughts and prayers, JoAnne

Monday, May 26, 2008

A feeling of deja-vu....

Michael had a pretty good week - well, mostly. He felt good with the exception of a 24-hour flu bug that swept through the house. Michael had it Thursday afternoon through Friday. I came down with it Friday around lunch time and Jeff came home from work with it Saturday afternoon. It started with a fever accompanied by a terrible headache and progressed into feeling like you were run over by a train. I am happy to say, we are all better now. In fact, Michael commented on Saturday how good he has been feeling.

It's funny - Michael keeps asking when he goes back to chemo. It has become such a "normal" routine for us, I think he feels disoriented on the weeks we don't go to Syracuse. But, don't despair, we had a trip to the hospital this week anyway.

Our neighbors (who, as I have mentioned, are our very good friends) were out of town for the weekend and we were watching their cats for them. Michael LOVES cats of any sort so he likes when we take care of their cats. Last night, I was in the garage refinishing our new bed when Jeff and Michael came walking back up the road from checking on Michael's furry friends. I heard Michael crying and I thought he was upset to leave the cats but unfortunately I was very wrong.

As they got closer, Jeff said "I think we have to make a trip to the emergency room. Michael cut his leg open". Jeff likes to tease me about a lot of things, including our trip to the hospital 3 weeks ago for Michael's cut thumb so I thought he was pulling my leg. He wasn't. It seems Michael was running back home and fell. (He has been running a lot this last week since he has felt so good and is so full of natural little boy energy.) When he got up, Jeff said he noticed a "little blood" on our buddy's knee. Then he picked Michael up and noticed a really deep cut about an inch long right on the bend of the knee.

We brought Michael in the house, cleaned up the wound and got the bleeding under control. Then we headed once again to the emergency room. Michael was distraught and was convinced he would never be able to walk again. When we assured him that Mommy and Daddy had cut their knees as children and that we walk just fine, he calmed down.

The physician's assistant that we saw said that he couldn't have done it on a worse part of the knee. He was concerned he wouldn't be able to get it to close and stay closed but he did. He had Michael bend his knee, he held the cut closed very tight and glued it like crazy. And I am happy to say, so far it has held. Michael has had a quiet day but is walking just fine and doesn't seem to have a lot of pain. Jeff and I decided we need to get some of that special superglue (called Dermabond) and keep it handy. And some tranquilizers for Mom and Dad wouldn't be too bad either.

(At least this wound isn't quite as ugly as the thumb was.)

It is back to chemo again this Friday. And according to my schedule, Michael is due for his antibiotic infusion also. I will post again next weekend and let everyone know how he does unless something comes up in the meantime. And the way our luck has been lately, you never know. Please keep Michael in your thoughts and prayers, JoAnne

Sunday, May 18, 2008

Michael has a new friend...

Today was our adventure at the Build A Bear Workshop. It was held at their store in the Carousel Mall in Syracuse and was sponsored by an organization that hosts fun events for children undergoing intense medical treatments. The organization was founded by a woman who lost her daughter to childhood illness a couple of years ago. Her daughter loved Build A Bear in her final days so her mother, Gayle, shares that joy with other children. There were around 16 children there today and each child was allowed to pick out an animal and stuff him. Michael chose a Bunny whom he named Midnight.

And while the girl from the store filled Midnight with stuffing, Michael pushed the buttons to add "Hugs & Kisses", "Love", "Kindness", & "Friendship".

Next, Michael pushed a button on a machine that caused a flurry of little red hearts, one of which he caught one to place inside Midnight. They also gave each child a "special" purple heart to place inside their animals that represented the little girl that was lost. A poem was read while they placed these special hearts in their animals about her smiling down from Heaven on them. It was very touching.

Then each new animal friend was sewn up by the store personnel and given an "air bath" by their new young owners. Each child was then allowed to pick out a new outfit and dress their new friend. It should come as no surprise that Michael dressed Midnight in a construction outfit consisting of a red t-shirt, blue jean overalls, a hard hat and work boots. And he completed the look with a tool belt full of toy tools.

On our way out of the mall, Michael and I took a spin on the antique carousel that the mall is named after. It was a wonderful way to spend a rainy Sunday morning. And, when I learned the story behind the generosity of this day, it made it all that more special for me.

Please keep Michael in your thoughts and prayers, JoAnne

Friday, May 16, 2008

Today was a short visit to the hospital...

Michael didn't' have to have chemo today (this was the first week of his 2 week break) - he just had to have his blood counts checked and he was checked over by Dr. Kennedy. The nurses drew Michael's blood with a finger stick so he didn't have to have his port accessed. Everything looked good. The counts that were low last week are coming back up. Michael has had a runny nose, a barky cough and has been really cranky most of the week. Dr. Kennedy said that he just has a cold and it will run it's course. She didn't see any sign of infection or allergies. Hopefully he will be better in a couple of days.

After we left the hospital, we took advantage of the fact that Michael wasn't sick or tired from chemo and stopped at a few of our favorite stores that we don't have locally (okay - my favorite stores). Then we went to Olive Garden for an early dinner because Michael wanted bread sticks, pa-scetti (better known as spaghetti) and TWO meatballs. And when the waitress asked if anyone wanted dessert, Michael piped right up and said he'd have "plain, white ice cream, please." And then he ate 2 scoops of that also. It certainly wasn't our "normal" Friday!

While we were at the hospital, Britney invited us to a breakfast party at one of the Syracuse malls Sunday morning. She said it is just for kids and their families in Unit 5C and one other unit at the hospital and that the staff will also be there. There will be a breakfast and then each of the kids will get a chance to build and dress a "Build A Bear". Michael is excited so we will head down early Sunday morning. I will try to get some pictures to share with everyone Sunday night. In the meantime - please keep Michael in your thoughts and prayers, JoAnne

Wednesday, May 14, 2008

More Make-A-Wish pictures...

I had asked one of Michael's "wish girls", Cheryl, if she knew if there were any pictures of the ribbon cutting ceremony at the Make-A-Wish Walk for Wishes. She contacted the local office and someone forwarded these pictures to me. (Thank you Cheryl and Crystal!)

I think Michael's hat may be just a wee bit big! And, do you see the blue hammer in his hand? (picture right) When Michael was a toddler he carried a toy hammer with him everywhere he went. Some kids have security blankets - Michael had security hammers. He doesn't do it very often anymore. And, the funny thing is I am so used to it that I didn't even notice he had it with him at the walk until I looked at these pictures.

You can see the ribbon that said "Make-A-Wish" that had just been cut to signal the start of the walk (picture left). That is Michael to the right of the gentleman that cut the ribbon.

Michael hasn't had the best week and we aren't sure why. He has a cold but it doesn't seem that bad. He is just very sad but when I ask him if he is sick or in pain, he just say "no Mama, I'm fine". He seems to cry and get frustrated very easily the last few days. We have spent a lot of time cuddling and rocking.

Michael doesn't have chemo this week or next so maybe the 2 week break will help his spirits. We still have to go to Syracuse on Friday to see Dr. Kennedy and have lab work done. But, at least it should be a short trip. And since Michael won't be sick or tired from chemo, we may try to do something fun. Please keep Michael in your thoughts and prayers, JoAnne

Tuesday, May 13, 2008

Happy belated Mother's Day...

I didn't get a chance to post on Sunday and we have been wrapped up in the media storm surrounding us the last couple of days. I received several wonderful gifts from Jeff and the kids this Mother's Day. I got roses, homemade soap and a beautiful necklace. Jeff and Michael also planted a row of trees in our front yard. I posted some pictures and the details to those on my other blog which you can go to by clicking here.

On this blog, I wanted to tell you about the Mother's Day present Michael made me in school. All of the kids in Michael's class dictated their favorite recipe to the teacher. And then they were all compiled into a "Our Mother's Day Cook Book". And being preschool, there were such sophisticated dishes as Hot Dogs, Macaroni and Cheese and Fish Sticks. I knew before I even found Michael's recipe what it would be - Scrambled Eggs. And since Michael makes the best scrambled eggs, I thought I would share his recipe with all of you (and what's a good cookbook without a few pictures?):

Michael's Scrambled Eggs

1. Go buy eggs.
2. Come home and crack the eggs.

3. Put milk into them and stir them.

4. Put them into a pan.

5. Cook for a little while.

6. Scrape them off the pan.

7. Put them on a plate.

8. Put catsup on them.

9. Eat them.

Don't they sound scrumptious? So the next time you are eating scrambled eggs, think of Michael and how much better they would taste if he had made them for you. JoAnne

Michael is a Local Media Sensation...

Just a quick post to give you the link to The Watertown Daily Times where Michael's story appears on the Front Page (click on the word "link" above to view the article). I have to say, the article, written by Rachel Hanley, was VERY well written. Also, there are some wonderful pictures by Times photographer Niko Kallianiotis. Please check it out.
(Photo taken by Niko Kallianiotis and courtesy of the Watertown Daily Times)

Also, we have a local website, Newzjunky, that compiles news stories found on the web and they posted a headline and link to the WWNY-TV story (this link is no longer working). I will post more later. JoAnne

Monday, May 12, 2008

"Little Boy Gets Chance to Play With Big Toys"

That was the title of the story Jeff Nelson from our local news station, WWNY-TV 7, did about Michael today. But I'm getting ahead of myself - let me go back to the beginning:
If you remember back in February, my boss's son-in-law, Bob, sent Michael a box of New Holland construction merchandise he gathered while photographing a trade show in LasVegas. Bob is a freelance commercial photographer who does a lot of work with Ford and New Holland. Michael enjoyed that box of goodies so well that Bob contacted the people at New Holland and they gathered an even bigger box of stuff for Michael. This box included several more toy tractors, a football, a soccer ball, shirts, jackets, hats, thermal coffee mugs, key chains... and the list goes on and on. It was like Christmas in April! And our family thought those 2 generous acts of kindness were more than we could ask for - but we were wrong!

(Daddy and Michael tossing his new New Holland football around.)

Little did we know, Bob was working hard to find a local New Holland dealer that would allow Michael to see the big equipment up close. And he found that in Joe at Tracey Road Equipment. Tracey Road Equipment is a dealership of big construction equipment (really BIG construction equipment) that has a location here in Watertown. In fact, they are located just off Interstate 81 and we pass it every week on our way to chemo. Michael looks every time we drive by and notices if there is any new equipment or if anything has been sold.

Joe and the other guys at Tracey ran with Bob's request to allow a little boy a chance to test out the big machines. They arranged to have a lunch of a couple of Michael's favorite foods, cheese pizza and hot dogs. They had a pile of gifts for Michael - some model toys, a couple of hats, a calendar, a can coolie and a "real" hard hat that one of the guys had airbrushed Michael's name on. And of course, the chance to "drive" a bulldozer, an excavator, a roller and an articulating dump truck.

And watching the fun today besides Jeff & myself were Jenny, Brian, my Dad, Jeff's Mom, Michael's Uncle Jeff and reporters from both our local TV news and newspaper. WWNY-TV7 aired the story tonight and has a video, a written brief summary and a couple of pictures from their story on their website which you can see here. Michael really enjoyed seeing himself on TV! The story will be in the newspaper tomorrow and I will post a link when it is up.

Michael is not feeling well tonight so I am going to end this post here and go cuddle him. I will post the Watertown Daily Times link and more pictures tomorrow. Please keep Michael in your thoughts and prayers, JoAnne

Friday, May 9, 2008

A Star is Born (well maybe)...

Today's chemo went better than last week (as far as side effects). I talked to Dr. Kennedy about Michael's reaction last week and she was concerned. She told Michael's nurse, Sharle, to give him the Carboplatin a little slower. That means chemo took a little longer, but that seemed to help. Michael did start coughing and his ears got a little red, but it was nothing compared to last week. Dr. Kennedy said that if he develops a more severe or frequent reaction, she will have us give Michael a steroid for a couple of days ahead of time. She said that seems to help kids.

As I said last week, Britney and the nurses got Michael some birthday presents. When we arrived today they gathered and sang "Happy Birthday" to Michael and then he opened his gifts. They got him "The Incredibles" DVD, a set of Lego's that makes construction vehicles and a puzzle. He really enjoyed them and we made a Lego bulldozer before Michael fell asleep.

Dr. Kennedy also told us that University Hospital is starting an advertising campaign for their new Children's Hospital that they are building. They asked all the units to "nominate" kids to appear in the campaign. She told them if they wanted a cute kid, that "they don't come any cuter than Michael V." So she asked if we would consent to Michael having his picture taken by a professional photographer to appear in some of their ads. We said "yes" of course! She said that she didn't know who they would wind up picking but she will tell them that we gave our permission for them to contact us. I'll let you know if anything comes of it.

Also, remember a couple of days ago I said that someone was going to a lot of trouble to make Michael's dreams come true? Well, I don't want to give away the surprise just yet but the "event" is happening Monday at noon. And, it is going to be on the local TV news and in the local newspaper. My Dad joked tonight that we are going to have to get Michael an agent!

My little buddy is laying quietly on the couch beside me. He just finished 5 freeze pops and half a bagel with cream cheese and now it is time for bed. He was terribly cranky and out of sorts today. He & I are going to go into his room now and watch his new movie while he falls asleep. Please keep Michael in your thoughts and prayers, JoAnne

Wednesday, May 7, 2008

Happy Birthday Dear Michael, Happy Birthday to You...

Michael had a wonderful 5th birthday. He & I made cupcakes to take to school for snack.

Then we sprayed them with green coloring (Michael's favorite) and he decorated them with sprinkles.

Here is the final product. Don't they look delicious?

Then after school, Michael & Daddy went to swimming lessons while I was still at work.

Then it was home for Michael's favorite pizza (just cheese, please) and cake. Two pieces of pizza to be exact. It was a great appetite day.

Then a few more presents with pizza sauce still on his face!

And now he is sleeping peacefully, one year older and just as precious.

(The picture above was actually taken a couple of weeks ago - before his haircut.)

Please keep Michael in your thoughts and prayers, JoAnne

Sunday, May 4, 2008

It's party time...

(Michael and his cousin, Kira)

Today we had a small party for Michael to celebrate his 5th birthday (which is officially Wednesday). Most of our family was able to make it. Jenny & Ralph were still home for the weekend and Jeff's Dad made it from Rochester. Unfortunately Brian had to work but was able to visit Michael this morning, before going to work. We also had a few of our closest friends join us.

We had planned on a cookout but unfortunately the weather didn't cooperate. It was cold and rainy all day so we cooked the meat outside but ate inside. And to top it all off, we enjoyed a Tigger and Pooh cake with a side of ice cream.

Michael enjoyed all of his presents (and of course there were many!) He received a stuffed Darby and Buster, a tractor, Disney CD's, a John Deere tractor, some clothes and a bunch of outdoor toys like a toy helicopter, squirt gun, a rocket launcher and a catching game. He also got a handheld V-smile unit and several games from Brian. (V-smile are educational video games.) That will be nice for helping to pass the time at chemo. Actually, I have seen a few of the kids in the unit playing with those.

Michael had a good day. I think he really enjoyed his party. He had a lot of energy and I think he felt pretty well. He didn't have much of an appetite, but that is standard for Sunday. I will post later this week after Michael has his little adventure. Please keep Michael in your thoughts and prayers, JoAnne

Saturday, May 3, 2008

Our first annual Walk for Wishes was a success...

Here is "Team Michael"

From left to right: Aunt Patti (my sister), Uncle Bubby (my brother-in-law), Kait (my great-niece), Jenny (my daughter), Ralph (my future son-in-law), Michael of course, Brian (my son) and me.

We made the trip to Syracuse early this morning to participate in the 3rd Annual Walk for Wishes. Michael wasn't feeling well when he got up but really wanted to go to the walk, so off we went. We were a little confused as to exactly which park the walk was in but finally found it. There were lots of teams there to raise money for this great cause.

They called for all the "Wish Kids" to come forward so Michael went to the front of the pack with the other kids. Then he stood right next to the mayor while he cut the ribbon that signalled the start of the walk. (We didn't get a picture but I am going to search the local news sites to see if I can find one and then I will link to it.)

It was a beautiful day. The trail where we walked followed Onondaga Lake, which is very picturesque. The weather was perfect - not too hot, not too cold. It had rained before we got there but the sun was shining brightly by the start of the event. Michael had fun splashing in all the leftover puddles.

Afterwards, the organizers had drinks and snacks for everyone. There were also some people there doing face painting for those that were interested. Michael got an octopus, Kait got a heart with wings and Jenny got a flower. All in all, it was a great way to spend a Saturday morning.

I want to thank everyone again for helping us to raise over $1,500 for Make-A-Wish. One of the first things the volunteers from Make-A-Wish told us was that they expected nothing in return for Michael's wish. But, we were really happy to give something back to this wonderful organization. And, to help them continue to grant wishes to children in our area. Please keep Michael in your thoughts and prayers, JoAnne

P.S. I know I haven't mentioned Michael's wish in a while but it is still in the planning and approval stages and I don't want to spoil the surprise until we are sure of the details. (Let's just say - they did find Darby.) Also, someone (not associated with Make-A-Wish) went to a lot of trouble to make Michael's dreams come true. I will post the details and pictures of that later in the week.

Friday, May 2, 2008

I have a riddle for you...

How do you make the doctor and all the nurses in a pediatric oncology unit come running?

Give up? - You start coughing and wheezing while receiving your chemo medicines.

And we found that out the hard way today. Michael was sound asleep and about half way through his Carboplatin when he started coughing and couldn't catch his breath. I rushed to the nurses station and told his nurse, Aileen, and she came running with several other nurses right behind her. They immediately stopped the Carbo and hooked up a large bag of saline to flush Michael's system. Then one of the nurses went to page the doctor that Michael saw today (Dr. Kennedy wasn't available and I can barely pronounce the other doctor's name so I know I can't spell it).

One nurse listened to Michael's lungs and said that he had some minor wheezing. Michael's ears were also the brightest red I have ever seen. The doctor came in and said that he was okay to receive the rest of his medicine so they started the Carbo again. A while later Michael's cheeks and nose turned bright red and started itching but his breathing was back to normal. And they measured his oxygen saturation level and it was 98% so I guess he was okay.

Other than that little bit of excitement, it was a pretty routine day. It was just Michael and I today since Daddy had to work. Michael got to look through the microscope again to see his blood (so did I). This time I had my camera with me so I can share it with you.

You may also notice Michael's latest haircut. It seems where his hair had thinned and is growing back in is a lot lighter than it usually is. In fact, from a distance, it almost looks like his head is shaved. I wonder if that is how it will be from now on. (There are a number of blonds in Jeff's immediate family.)

Britney (the child life specialist) came into the treatment room to say hello to Michael and then went out to get all the nurses. They had gotten him some birthday presents and had planned to sing "Happy Birthday" and surprise him but by the time they came back to the room, Michael was out. (He fades fast after getting his Benadryl.) They told me to bring the presents home for him but I want Britney and the nurses to give them to Michael and for them to see him open them. So we left the presents there and they are going to give them to him before the Benadryl next week.

First thing tomorrow morning we will be heading to Syracuse to participate in the Make-A-Wish Walk-A-Thon. "Michael's Team" is meeting here at 7 am and then will head down together. There will be Michael, Brian, Aunt Patti, Uncle Bubby, Kaitlyn and myself going from here. Dad was going to join us but has a cold and is not feeling well and Jeff is working a 12 hour shift. And then Jenny and Ralph are coming from New Jersey and will meet us there in the morning. (They are going as far as Ralph's parents in Binghamton tonight.)

I want to thank everyone that has supported us with donations. I'm happy to report that we exceeded our goal of $1,000. There is still time to help us support this wonderful organization - the link to our webpage is to the right. I will post some pictures tomorrow night. Please keep Michael in your thoughts and prayers, JoAnne

P.S. I added a picture of Michael's injured finger to the post before this one. I tried to do it the other night but couldn't get it to load. (I'm pretty sure it was me and not the computer.) I will warn you, it is not for the faint of heart. The picture is graphic and ugly. So please don't scroll down if that sort of thing bothers you.