Sunday, November 30, 2008

Catching up - Part I ...

It has been a while since I posted, so I have a little catching up to do. Michael and I went to chemo a week ago Friday. The ride to Syracuse was an easy one. When we first started out, we passed a tractor trailer with Canadian license plates. I told Michael that I bet he had just talked to Daddy (Jeff works for US Customs and was at work that morning.) So for the rest of the trip we had to check out the trucks to see which ones had just seen Daddy and there were actually quite a few of them. Michael also sang his entire repertoire of 3 Christmas carols all the way down (note to self: teach Michael some new Christmas carols).

It was pretty quiet when we got to treatment so we spent some time coloring with Britney (the child life specialist). I was thinking about how when we first started treatment, we didn't know any of the people that work in Unit 5C. We must have had the look of a deer caught in headlights our first time in the unit. I recognize that look some of the parents that are there now. I can easily tell the ones that are new or just there for a one time visit.

Michael's treatment went well. But the ride home was a nightmare. It was snowing when we left Syracuse and for the first 30 miles or so, we traveled 15-30 mph in whiteouts. Fortunately, it cleared up for a little while before turning to ice closer to home. Our normal one hour drive took almost two hours. But we made it home safely. (We saw a couple of bad accidents along the way.) It's going to be a LONG winter!

Michael didn't have any allergic reactions to the Carboplatin but I have to say he is experiencing the side effects of chemo a lot worse and for a lot longer this time around. He is sick right through the weekends now.

And he sleeps a lot. Jeff was working midnights this past week so he would take a nap after dinner before going to work. He would lay down around 6 pm and Michael would lay down with him and sleep straight through until morning.

Michael woke up vomitting Saturday morning but felt better as the day wore on so we thought we were out of the woods - but we weren't. On Sunday morning, we headed back to Syracuse to go to the semi-annual Build-A-Party for the kids of 5C. Michael was fine when we got up and left the house but got sick before we got to the mall. The storm seemed to pass and we made our way to the party.

Michael picked out a scruffy dog, who he named Ruff...

... who he stuffed with Hugs & Kisses, Love, Kindness, Friendship and a special little heart ...

... then he gave him "airbath"...

... and his new best friend was finished.

This is Michael with Ruff and Britney (5C child life specialist).

Then we visited the food court to fill up Michael's empty belly and to take a spin on the carousel before heading home. The ride home was tense with Michael throwing up all the way but we eventually made it home. He spent the rest of the day doing quiet things and was feeling better by Monday morning.

Over the next couple of days, I will share with you Michael's first report card of Kindergarten, our Thanksgiving and this week's chemo. Please keep Michael in your thoughts and prayers, JoAnne.

Saturday, November 15, 2008

Right on schedule...

Michael woke up around 4:oo am this morning and started throwing up (just like any Saturday when Michael is going to be sick from chemo). Around 5:00 am Michael and I got up so that Jeff could get a little more sleep and he and I watched Kung Fu Panda in Michael's room. He alternated between laughing hysterically and vomiting for the next couple of hours.

After breakfast we took Michael to spend the day with Jeff's Mom while Jeff and I went on a long overdue date. We started our Christmas shopping and then had a wonderful lunch. Fran (a.k.a. Grandma) said that Michael wasn't sick at her house at all. And now, Michael is sleeping peacefully cuddled up between Mommy and Daddy on the couch. I hope that means that the upset tummy is over for this week. Please keep Michael in your thoughts and prayers, JoAnne.

Friday, November 14, 2008

Today went well...

Michael and Daddy were on their own today for chemo. Jeff said it went smoothly. Michael was asleep by the time they got home and we put him straight to bed. Hopefully he won't be as ill this week as he was last week. Please keep Michael in your thoughts and prayers, JoAnne.

Tuesday, November 11, 2008

Today is a better day...

Michael woke up hungry and with a smile on his face so I think he is over his latest hurdle. Please keep him in your thoughts and prayers, JoAnne.

Monday, November 10, 2008

Michael's still down and out...

Michael had kind of a rough weekend. His poor stomach has gone back and forth between being queasy and hurting. He has been able to eat and has kept enough down that I am not worried about dehydration but keeps throwing up enough to ruin his day. I just feel bad that he doesn't feel well. He woke up this morning and was still vomiting so he stayed home from school. They are off tomorrow for Veteran's Day so hopefully he will be fully recovered by Wednesday. Please keep Michael in your thoughts and prayers, JoAnne.

Saturday, November 8, 2008

Michael's counts were good...

We went to chemo yesterday and Michael's counts were great. His platelets went from 54 the previous week to 147 this week. And his ANC rose from 800 to 1500 so we were a go for chemo. Unfortunately, it didn't go very smoothly.

Michael was almost asleep and was resting quietly while watching a movie so Jeff and I ran down to the cafeteria for a late lunch. We were only gone for a few minutes but when we came back up to the unit, there was a doctor and nurse hovering over Michael. They were taking his blood pressure and asking him how he was feeling "now". It seems Michael had an allergic reaction to the Carbo (this happened once before).

He started complaining that his throat was "itchy" and then he started coughing. Since they already give him antihistamines as part of his treatment every week, they gave him some steroids to stop his reaction. Starting next week, we have to give him another antihistamine at home starting on Thursday to see if that will help. Let's hope so. We can do without the extra excitement.

Although, we did have a pleasant surprise, too. A company named Chromalox dropped off 98 fully stuffed and dressed Build-A-Bears for the hospital to give to the kids. Michael got a bear dressed in pirate pajamas. Each bear came in a box with a tag on it indicating if it was for a boy or girl and what age group it was appropriate for. What a great gesture.

Michael started throwing up around 4 am and is just starting to feel a little better now. Of course, since he hasn't had chemo in over a month, we're not real surprised that Michael is not feeling well. Let's hope his little stomach settles down and he feels well enough to get up and play. If not, we will just have a quiet day. Please keep Michael in your thoughts and prayers, JoAnne.

P.S. Apparently I miscalculated how much longer we have until the end of chemo. Dr. Kennedy said yesterday that we are about half way through and have six months left. Oh well. We'll just take it one week at a time.

Wednesday, November 5, 2008

It's a "scaredy" bat !!!

Halloween 2008
(Thanks for the photo Uncle Jeff)

Tuesday, November 4, 2008

A little overdue update...

Things have been busy but pretty uneventful since my last post. Michael had his scheduled two week break from chemo since our trip to Rochester. Our most recent trip to Syracuse was on Thursday last week so that Michael wouldn't miss the Halloween parties at school on Friday.

He and I made Halloween cupcakes to take to the hospital staff and Michael took his costume to show everyone. They gave Michael a gift bag with a pillow shaped like a spider (which he loves), some candy and a little thermos. They told us the pillows were made and the bags were assembled by a local Girl Scout troop.

When Dr. Kennedy looked at the slide of Michael's blood, she could tell that his platelets were still low but slightly higher than 2 weeks ago. She decided that if that was confirmed by the lab, she would give Michael chemo anyway. And although the lab did agree with Dr. Kennedy on the platelets, they showed that Michael was also Neutropenic (his ANC was only 800) so she decided to give Michael another week off. She thinks Michael is STILL fighting some sort of viral infection (he has had a runny nose since August). Hopefully his counts will be up this Friday and we can get back on track.

About the only excitement that we have had is this....

The beginning of last week, Mother Nature dumped about 16 inches of snow on us.

But since Michael loves playing in the snow, he couldn't have been happier!

Fortunately, it warmed up considerably and all the snow melted before we went Trick or Treating on Friday night. Michael dressed up as a bat and had a ton of fun. (I guess that is the silver lining to not receiving chemo - he felt great for all of the Halloween festivities.) I will post a picture of Michael in his costume tomorrow. He fell in a huge mud puddle as he was getting in the car to come home so I had to wash his costume and haven't gotten a good picture of him. I usually take a picture before we leave the house but we picked him up from an after school Halloween party, grabbed a burger and went straight to Trick or Treating.

But I do have a picture of our tuckered out little boy as we were arriving home...

Until tomorrow, please keep Michael in your thoughts and prayers, JoAnne