Friday, May 30, 2008
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
Monday, May 26, 2008
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.
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
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
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
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.
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
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.
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
Monday, May 12, 2008
(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
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
Then we sprayed them with green coloring (Michael's favorite) and he decorated them with sprinkles.
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
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
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.
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.