Tuesday, September 30, 2008

What an aggravating day...

I have been really sore all day (but I know I will be fine in a couple of days). But, I am happy to say that Michael doesn't seem to be suffering any side effects from our accident. He had another great day at school and I think he had a good time telling anyone that would listen about his little adventure last night.

Our body shop guy looked at our car and said there is a LOT of damage. It will be up to the insurance adjuster whether they fix it or total it and he is supposed to call us tomorrow. We are really hoping they agree to fix it.

We called the other guy's insurance company (or at least who he said was his insurance company) and, after about an hour, they decided they had never heard of him or his car. So, we found out who the DMV thought was his insurance company (some company we never heard of in California) and their number was disconnected. By now we figured he probably doesn't have insurance of any kind. So our next step was to call the home phone number he gave the police to see if we can get some answers. Only problem was it wasn't his number (or address for that matter) but that of his mother who hasn't seen him for months.

After Jeff explained why we were looking for her son, she was very sympathetic and offered to help any way she could. She called her other son who tracked down his brother's insurance agent and got the policy name and number for us. We are grateful for their help - they could have just washed their hands of the whole situation but they didn't. And now the claim has been filed, we have a rental car and hopefully our car will be fixed soon. I will keep you posted, JoAnne.

Monday, September 29, 2008

If it wasn't for bad luck...

We had a wonderful weekend and I was going to share all of the details with you but something happened tonight and our fun will have to wait.

Michael and I met Brian for dinner tonight and after we left him, we went to the drugstore to pick up some prescriptions. As we were leaving, we stopped at the red light by the pharmacy. When it turned green, we went straight through the intersection. There was a car across from me waiting to turn left. Unfortunately, he didn't yield the right of way to me and I T-boned the passenger side of his car when he turned in front of me.

The good news is Michael and I are both fine. I was worried about Michael's port (with the seat belt) but it appears to be fine. My neck and shoulder are sore from my seat belt, but I will be fine.

The people in the other car are fine also. At first, they were saying they were hurt but the police said they were fine and were just trying to get sympathy since:

1. The driver was driving with a restricted license from a previous DWI...
2. He was at fault for failing to yield the right of way and ...
3. They had had a "few" drinks before getting in their car and driving.

Michael was shaken up a bit and asked the policeman, "What the hell is Daddy going to say?" But then he got distracted when he found out the ambulance driver that showed up was the same one that transported him to Rochester in the middle of the night over a year ago (she remembered our little buddy).

And although all of the people are fine, the same can't be said for our car...

Our poor car!!

This is mine and Jeff's all-time favorite car and now it might be totaled. The firemen pulled the front end back out enough and checked the brakes and steering so that I could drive it home. We have to go to the police station in the morning to get a copy of the police report. Then we will call the insurance company and our body shop to find out the extent of the damage. I will keep you posted.

And, tomorrow I will tell you all about a trip to the cider mill, a waterfall and Michael's first fishing trip. And maybe you better keep us ALL in your thoughts and prayers, JoAnne.

Friday, September 26, 2008

The tools of chemo...

I want to show you some of the things that have become such a natural part of our lives since starting chemo. Some you may recognize - some you may not.

This is a toothette. It is a small sponge on a lollipop stick. Remember how I said that Michael's mouth has gotten sore and it is difficult for him to brush his teeth with a tooth brush? Well, I spoke to our nurse case manager from our insurance company and she suggested I try these toothettes. So I was on a mission to find some. It didn't take long.

Michael's godfather, Uncle Jeff, has a brother, John, that owns a medical supply company locally. I asked Jeff to ask John if he knew where I could find these toothettes. He did better than that - he had a box in his warehouse and gave them to us (and refused to let us pay for them). But, before he gave them to Michael, John and one of his managers tried them out to make sure they would be comfortable for Michael.

Jeff is also a salesman for the trucking company I work for. Some of his "accounts" are medical supply companies we haul freight for so he asked one of his contacts about the toothettes and they forwarded a huge bag to Michael.

We now have enough toothettes to last Michael a long, long time. So, we took some of them to chemo today and gave them to Britney (the child life specialist) to hand out to any other children that may be experiencing pain while brushing with a tooth brush. It is my understanding that this is even more common in children receiving drugs for Leukemia. And, I told her that if she runs out to let me know - I am sure we could spare some more.

BTW - this is an example of what I spoke about some time back when I said that whenever we need something, there always seems to be some kind and generous person or people to help us out with what we need.

Now I am sure you will recognize this next item but I bet you can't figure out what it has to do with chemotherapy treatments.

Give up?

You know how Michael has a port-a-cath implanted under his skin in which he receives his chemo medicines? Well, before we leave home, we place a dab of "magic cream" over his port that numbs the skin and makes him more comfortable while they access his port with a needle. And that would make an awful mess if we didn't do something so...

... we cover the cream with Glad Press 'n Seal. This idea came from one of Michael's nurses. We had been using an adhesive patch that was really sticky and uncomfortable for Michael. So she suggested Glad Press 'n Seal. It sticks to Michael's skin but comes off easily when the time comes.

When we get into the treatment room at the hospital, Michael unbuttons his shirt and removes the Press 'n Seal. (He always wears a button up shirt on chemo days as it is easier with all of the IV tubing.)

Next, we get the access site "squeaky clean". Hey - who is that masked woman?

Now it is time for the needle. Michael is not afraid of needles at all (good thing) and always watches.

The next step is to make sure the port is working correctly. This is done by "finding red worm" (blood in the tubing). The nurses use a syringe to flush the port with saline and then to get a "blood return".

Once they are sure the needle placement is perfect, the needle gets a couple of "pillows" to make it comfortable.

Then the needle is covered with a bandage to keep it in place and blood is drawn to be tested to see if we are a go for chemo or not. Everything was great today and chemo went very smoothly.

We get Michael settled into the infusion room because as soon as he starts getting his pre-meds for nausea ...

... this is what happens!

Oh - and that masked woman is none other than Michael's best buddy, Jen.

Please keep Michael in your thoughts and prayers, JoAnne.

Thursday, September 25, 2008

Come with us to Erie, Pennsylvania...

As planned, we left on the morning of Friday, September 12th to make the journey from our home to Erie, Pa. It took about 5 hours and Michael slept a good portion of the way. It was raining so hard that you couldn't see very well so Jeff & I took turns driving. We went straight to the theater and arrived about a half hour before the show.

The show was at the Warner Theater which was recently refurbished and the interior was absolutely breathtaking.

They opened the doors around 3:30pm and we made our way to the manager's office as we we told to do. Jeff & I got laughing because the ushers in the theater could all work for the Secret Service as they were very zealous in keeping people away from the auditorium before the show. Jeff said he was sure one of them was getting ready to tackle me as I followed the manager to go see Darby.

And here she is:

Michael was very reserved and shy around Darby. I think he was in awe of finally meeting her.

He was a lot more comfortable with Pooh....

... and Tigger.

I think that is because they weren't "strangers" to him. He had not only met them, but spent quite a bit of time with them at Disneyland. I think if he had more time with Darby (we were only with her for about 5 minutes), Michael would have opened up but it doesn't matter because he is content and happy with the time he had with her.

After our meet and greet, we made our way to our seats and watched the show. We were in the third row, just slightly left of center stage, which was great. Michael clapped, waved, sang and danced.

After the show, we went a couple of doors down from the theater and had an awesome dinner at an authentic Italian deli before heading to our hotel. Of course, the first thing Michael did after we checked in was head down to the pool.

There was a traditional pool -

... and a kiddie pool that had an umbrella shaped sprinkler that Michael played under.

I'm sorry the pictures of our meeting with Darby aren't that great but the manager took the pictures of Michael with Darby with my camera and all of the pictures after that are blurry. He must have hit the dial and changed the settings by mistake and it didn't get fixed until I turned the camera off and on again.

Tomorrow is chemo again already. It will just be Michael and I as Daddy is working a 16 hour shift. We picked up one of Michael's all-time favorite movies tonight, "Spookley the Square Pumpkin", to take to treatment tomorrow and share with the staff. Michael has been bugging me (with a capital "B") to put up the Halloween decorations for the last couple of weeks and we already ordered his "special" costume so I think he is just a little excited about Halloween this year!

Michael had another great day at school today. Mrs. Greenwood sent home a note today that said "Michael has done a super job since Wednesday." There was also a sampling of the work he did this week and not only were they done, they were done very well. I guess he finally figured out that he might as well do his work with the other kids because if not, he will just have to do it at home. Michael went to the after school program that is right at the school today and when I picked him up, he took me to his classroom to show me some of the other things he had done this week. There was such excitement and pride in his voice I just wanted do a little dance. (But I thought the custodian may think I had lost my mind so I controlled myself.)

I will post again tomorrow night so please keep Michael in your thoughts and prayers, JoAnne.

Wednesday, September 24, 2008

Two in a row...

Michael had another great day at school today and his mood is still upbeat and positive. He said he completed all his work today and his teacher didn't send home a note saying anything different so I am hoping that is the case.

I have to admit that getting everything off my chest with last night's post, felt really good. I told you before that this blog started out as an efficient way to keep family and friends posted on Michael's progress but has become very therapeutic for me. And as an added bonus, I keeping an accurate record for our family of both the good and the bad parts of our present journey and all of emotions that go along with it.

I know I promised to post about Darby next, but I still haven't uploaded the pictures from my camera so I am going to have to make everyone wait at least one more day. Until next time, please keep Michael in your thoughts and prayers, JoAnne.

What's been going on...

I am sorry I haven't posted in a while - life has been a little overwhelming. Okay - I lied. It's been a LOT overwhelming.

Michael has had a hard time adjusting to school. I attended open house last Wednesday night and Michael's teacher said she had some concerns and wanted to meet with us to discuss some things. I wasn't very surprised. I could tell that Michael wasn't enjoying kindergarten and he had been acting out at home. One of the problems is he doesn't like going to school all day. He keeps asking why he can't go half a day like he did last year. Another thing is, they color a lot in kindergarten and, as I've mentioned before, Michael HATES coloring.

But, the most troubling problem is that our bright and outgoing little boy has become so introverted. And, as his mother, it is breaking my heart. Although none of the children treat Michael any different, Michael KNOWS he is different from all the other children. We try very hard to downplay Michael's illness and remind him of the ways he is just like any other 5 year old but he is very smart and perceptive. He knows he is the only one that misses school every Friday to get chemo. And, he knows no other children in his school have a port. He's also expressed to me anxiety that he is going to throw up in class and be embarrassed in front of all the other kids. So, although I know how to calm some of his fears, some are just beyond my capability to fix and I am having a hard time dealing with it.

Jeff and I made an appointment to meet with Michael's teacher before school last Thursday morning and we discussed a lot of things. She told us Michael is not doing his "work". Not because he isn't able to but just because he refuses. She asked us for suggestions on how to do deal with this, given Michael's circumstances, and we told her to treat him like she would any other student that refused to cooperate. Although Michael has experienced terrible things in his young life, that doesn't excuse not listening to his teacher. We also asked if Michael was interacting with the other kids and she said "no", he tends to sit off by himself. That was disheartening to hear for both Jeff and I.

Thursday afternoon, the after school program called and I had to leave work early because Michael was nauseous and complaining of a stomach ache. So, we came home and that night Michael and I had a long talk. He got out a lot of emotions and feelings and we had a good cry together. Friday morning, his attitude was much better and I sent him to school for an hour before chemo. His teacher sent home a note commenting on the improvement in his attitude.

Monday morning I put my little buddy on the bus and headed to work. About an hour later, I received a call from the school nurse saying Michael was sick, so once again I left work and went to pick him up. He spent the whole afternoon in his bed (no TV or music) doing some of the work that he had refused to do in school. And when he was finally allowed out of bed, he wasn't allowed to go outside and play. I told him if he was too sick to go to school, he was too sick to go outside and play. By dinner time, he was asking me when he could go back to school.

I am happy to report that today was an outstanding day for Michael. Jeff said he was like the old Michael when he got off the bus this afternoon. And, he got not one, but two stickers for doing his work. And for the first time, he mentioned a new friend by name and told us some things about him. I told him we will contact the new friend's parents and see if he can come over to play. Michael has also been invited to a birthday party this weekend and is looking forward to going. Let's hope we are over our little hump and things get easier from here on out.

Aside from all of the issues at school, there are a few other things that have been bothering me. One is Michael's overall condition. He has been complaining of terrible pains in his stomach and back. They seem to come and go and, of course, he wasn't experiencing them when we saw Dr. Kennedy last Friday. He has other pains, too - yesterday it was his arms that hurt and today it was his legs. When I asked him why he didn't play with the other kids on the playground at school, he said he couldn't keep up with them so I think his stamina isn't 100% either. I know all of this is to be expected, but it is so hard to know when to push him and when to let things slide.

Another concern is that Michael's mouth is getting so sensitive and his taste buds so wacky, that we are having a hard time finding things to feed him. He definitely likes "bland" foods now. So, I made him macaroni and cheese and biscuits Saturday night (you can't get any blander than that) and he said the macaroni hurt his mouth. So, he had biscuits and milk for dinner. I'm afraid we are going to run out of ideas to feed him all together.

Michael did have chemo last Friday and it went well but he was very sick all weekend. So sick, that he only put up a little fuss (instead of the usual huge fuss) to take his anti-nausea medicine. And he needed it right through Sunday instead of just Saturday. He's also had a terrible time sleeping since Friday. This happened once before for a couple of days after treatment and no one knows why.

On top of all this, I am very stressed at work. I got behind the week Michael was in the hospital and I have had a difficult time getting caught up (this is a busy time of year in our industry). My bosses are very understanding but I need to get things in order for my own peace of mind. But that just seems impossible to do when there seems to always be something going on with Michael. I know I will get over this hump too, but in the meantime, I'm overwhelmed.

On a happier note, we did travel to Pennsylvania a week ago Friday and Michael was finally able to meet Darby. I will share the details of that trip and some pictures next time. Until then, please keep Michael in your thoughts and prayers, JoAnne.

Sunday, September 7, 2008

I don't like spiders and snakes...

...but the occasional frog is okay. Michael found this little guy yesterday. It's a tree frog. I've never seen one like it. He is so tiny and a bright green.

He was pretty content to just sit on Michael's finger, too. Then Michael set him down on the table on our deck and was going to give him a "ride" in one of his toy tractors. Apparently his mother (the frog's mother that is) told him to never accept a rides from strangers because he took off in a flash.

I'm relieved to say that Michael's appetite has been much better the last couple of days. He played outside quite a bit this weekend and even helped us paint the dining room. This afternoon we made some sugar cookies but then he became very quiet. He and I sat for a couple of hours, cuddled up on the couch, watching movies. It's not like Michael to sit still through one whole movie. He complained of a stomach ache (which he does frequently these days) and his eyes looked very tired. So, I tucked him into bed early and he is now sleeping peacefully. Let's hope he is just a little tired from a busy weekend and that I am just becoming a little paranoid.

Please keep Michael in your thoughts and prayers, JoAnne.

Thursday, September 4, 2008

No trip to Syracuse this week...

Dr. Kennedy called today to check on Michael. I told her he still has a little cough but has been fever free. She said that since he seems to be doing fine, there is no reason to make the long trip to Syracuse in the morning. She didn't want him to miss any school his first week back.

We also talked about Michael's mouth sensitivity. She doesn't think that problem is from the chemo but possibly a mouth virus that doesn't cause noticeable sores. She said that is quite common in the summer. Perhaps that is what was ailing him last week. We'll just have to watch him. He actually ate even better tonight than he did last night.

Michael had another great day at school. He told me his favorite part of the day is gym because they "get to run around and have fun."

Next Friday is our trip to Erie, PA to meet Darby from My Friends Tigger and Pooh. Our local Make-A-Wish chapter made arrangements for Michael to meet Darby about a half hour before the show. They also reserved a hotel room for us, paid for the tickets for the show and set us gas cards for our trip. After all they have already done for us, this is wonderful. I can't wait to share all of the details with you.

Please keep Michael in your thoughts and prayers, JoAnne.

Wednesday, September 3, 2008

Michael is officially a kindergartner...

Yesterday we went to Michael's school for orientation and he wasn't too thrilled. Even though there were a bunch of his friends from last year in his class, he was uncomfortable. So, when he woke up this morning, he said that he didn't feel good and didn't want to go to the first day of school.

Once he got up and started getting ready, his excitement started increasing. By the time the bus came at 8:50am, he was ready to go. While we waited for the bus, Michael picked some flowers for his bus driver, Debbie. When he got on the bus, he expected to have to sit in the first row since that is where he had to sit when he went to Pre-K last year.

Debbie told him he was a "big kid" now and could sit anywhere he wanted. He went back a couple of rows and took the first empty seat. Then when his friend from across the street, Jarrod, got on the bus, the 2 buddies rode to school together.

When he got home this afternoon, around 4:05pm, Daddy was home waiting for him and Michael called me at work to tell me about his day. When I asked him how his day went, he told me "better than I expected". He said he had a LOT of fun and that he can't wait until tomorrow to go back. He is a character!

Michael has still had a cough since we came home from the hospital but hasn't had any fever (whew!) He's been a little cranky and hasn't been eating and drinking as much as I would like. But, he did do better tonight. The Vincristine has made Michael's mouth sore and sensitive and difficult to eat or drink. I am going to talk to Dr. Kennedy about anything we can do to make him more comfortable this week.

We have to go to Syracuse Friday to have his counts checked and a check up but no chemo. (This is week 1 of his 2 week break.) His appointment is in the morning, so hopefully he can be to school by early afternoon. Friday is art day and they could do some painting...speaking of which....

I forgot to tell you that while Michael was in the hospital last week, there was a professional artist that visits the children's wards once a month and she helps the pediatric patients paint. She happened to be there Wednesday night and the nurses took Michael and his roommate downstairs to join in the fun. Here is one of Michael's masterpieces:

Isn't is awesome? He started with the green and yellow item near the bottom - it is a tractor with a caution light on top. Then he added the black road and the beautiful tree. The blue dots are the rain coming out of the black cloud (and that is why the tractor had to have a light on it). He was telling us this story the whole time he was creating.

The artist was pretty taken with him. She said Michael has quite a vivid imagination. And she was impressed with his painting ability. When I told her that he loves to paint - but hates to color, she wasn't surprised. She said coloring with crayons isn't "tactile" enough for him. Paints allow him to be creative at a quicker pace that allows his artwork to keep up with his imagination. Once she said it, it made sense to me and I was glad to have that little bit of insight into my special little boy.

He also made another painting, which he did with his fingers instead of a brush, and he painted a little ceramic dog, both of which he did for Jen (his special nurse from 5C). Jen came to visit Michael every morning when she got to work and again every afternoon before she went home. She also brought Michael a stuffed alligator that is green and yellow (his 2 favorite colors) that Michael has added to his bedtime menagerie.

I will post Friday night and let everyone know how Michael's doctors appointment goes. Please keep Michael in your thoughts and prayers, JoAnne.

P.S. I have one more picture that I have to share with everyone- it is Jenny pinning Michael's boutonniere on him before he walked her down the aisle at her wedding. Everytime I see it, it brings tears to my eyes.