There's been a change of opinion...

When Michael woke up this morning, the line that was a bright red last night had turned more of a brownish red (kind of like a healing bruise). We began to suspect that it wasn't an infection of his port but an injury (actually Jeff thought it was a bruise last night). Michael had said last night that he fell and hit his port but we didn't think he hit it hard enough to cause the bloody line. Also, if someone hugs him a little too tight, he cries that it hurts his port. We didn't think he could injure it without some distress. The line also showed up within minutes of him saying he fell and we thought that a "bruise" would take longer to appear.

I talked to Dr. Swan this morning and she didn't think that was possible that it was anything but an infection and wanted to see it for herself. Michael and I went to her office this afternoon and she agrees it looks like a bruise. She said she wouldn't have believed it if she hadn't seen it herself! She also checked with the lab at the hospital while we were with her and there are no bacteria growing in his blood culture - which is a good sign.

We are anxious to go to Syracuse tomorrow to have the doctors and nurses there tell us what they think. And Dr. Swan wants us to keep giving Michael the antibiotic until Dr. Kennedy examines him tomorrow and gives us her opinion. They will also access the port to draw blood and that will reassure us that he didn't dislodge the catheter. Dr. Swan also wants us to talk to them about giving Michael iron supplements through his port since his bloodwork shows that he is anemic.



Michael is enjoying himself with his big brother tonight (as you can see in the picture above). Brian came over to "borrow" our garage so that he could install a remote car starter for a friend of his. I don't know if Michael is being a help or a hindrance but he is certainly enjoying himself.

I will post again tomorrow night after we get home from Syracuse and let everyone know what Dr. Kennedy says. Keep Michael in your thoughts and prayers, JoAnne

Remember when I said...

Remember when I said that one of the reasons we chose the internal port instead of the external one was because there was less of a chance of infection? Well, we found out tonight that less of a chance of infection doesn't mean no chance of infection. When Jeff took Michael's shirt off him tonight to put his pajamas on, he noticed a red "line" that followed the path of his port's catheter under the skin that wasn't there when I got him dressed this morning.

I immediately called the oncologist on call in Rochester and she confirmed what Jeff & I suspected - that it was a sign of an infection in his port. She told us to take him right to the emergency room to have blood cultures done and to get an antibiotic infusion. So off we went. (BTW- The first thing Michael wanted to know was where the play room was in this hospital.)

My next call was to Dr. Swan. She called the hospital for me to see if there was anybody there that had experience accessing the type of port Michael has - which there wasn't. That told us that if it became necessary to access the port for any reason, we would have to go at least to Syracuse. Then she told me what types of tests the ER doctor should do, which he did.

The blood tests showed that although Michael's counts were down slightly and he is a little anemic, they were good enough that he should be able to fight off this infection. And after examining him and conferring with the oncologist in Rochester, the ER doctor said that the infection isn't severe. For one thing, it's not a systemic infection or he would have a fever, which he doesn't. He was a little puzzled though because he thought the infection should be near the access site and it is up at the other end of the catheter. He said actually he has never seen anything like it (go figure!).

The doctor thinks with oral antibiotics and close monitoring, Michael should be fine. We sure hope so. We don't want him to have to have the port removed and an external one started. The ER nurse (who happens to be a good friend of ours) drew a line around the redness as it was tonight and said to watch and make sure it doesn't spread beyond that mark. If the infection seems to get larger, that could be a sign of cellulitis, which would not be good.

One thing that was very nice tonight was that the ER nurses were concerned about keeping Michael away from the other patients that could be contagious with all sorts of nasty germs. They immediately isolated him and put him in a private room off the beaten path. They even gave Michael a mask to wear. He brought it home with him so now when he plays "doctor" and gives us our treatments, he can look the part, too.

For now, it is another medicine and close monitoring. They will know more about the type of infection it is in a couple of days when the blood cultures come back. I will call all of the "team" tomorrow, Dr. Korones (Rochester), Dr. Kennedy (Syracuse) and Dr. Swan (Watertown) to update them and see if there is anything they would like to add to this latest development. And I am sure Dr. Swan will want to see him which Michael will love! We don't know yet if this will affect his ability to receive chemo this week. I guess the oncologists will have to make that call.

I am just glad that he should be able to go to school tomorrow (actually it is tomorrow already) so he won't miss the Valentine's Day party. He still hopes every day that they will have a sledding party again so that he can go. I will post when we know anything new. Say an extra prayer for Michael tonight, JoAnne.

This week is just like last week (so far)...

Michael had a great day Saturday but was sick to his stomach both yesterday morning and this morning (just like last week). Unfortunately, Dr. Kennedy said that that will probably be the pattern every week. The only difference this week was a low grade fever all day yesterday that broke mid-morning today. He also ate very little yesterday and just wanted to cuddle on the couch all day. But I'm not complaining about that part at all ! I talked to the oncology unit in Syracuse and they said not to worry unless his temperature went above 101- which thankfully it didn't.

The picture to the right is Michael and his stuffed kitty, Charlie, in a new chair that we ordered for his room that arrived today. Now we have a comfy place to sit each night and read our books together. We can also sit and cuddle quietly with Michael when he isn't feeling the best. As always, please keep Michael in your thoughts & prayers, JoAnne

Day 28 of Michael's treatment plan...

As scheduled, we went to Syracuse for Michael's fourth treatment yesterday. First, we saw Dr. Kennedy, who Jeff and I really like. She's very caring and actively involved with us in Michael's care. She definitely stays on top of things. (She reminds me of Michael's pediatrician, Dr. Swan, who we love so much.) I have to say, she gave us a little scare though.

She asked us if Dr. Korones had mentioned an infection that chemo children are very vulnerable to (which he hadn't). She went on to tell us it is a terrible infection that is very difficult to treat since the child's immune system is already compromised from the chemo. She said that the bacteria usually settle in the lungs and cause severe pneumonia and that the children usually wind up in ICU on a ventilator. For a minute we thought she saw some sign of the infection in Michael !! But what she was telling us is that children on chemo should be on antibiotics for the entire time. And she noticed Dr. Korones had made notes about it in Michael's records but hadn't given us a prescription. Whew !! So, now Michael has to take an antibiotic twice a day, 2 days a week.

Michael had the same great nurses as last week and they remembered his socks. Michael's Aunt Denise and cousin James live in Alaska and sent him a couple of boxes of goodies from there. Included were a whole bunch of socks that say "Alaska" and are bright colors with pictures of things such as moose and bears. Michael loves wearing them and has enough to wear a different pair every day. The nurses told him that they can't wait until next week to see the next pair.

Michael was out of sorts yesterday. He was disappointed that he had to miss a sledding party at school to go for his treatment. He was also really apprehensive and cried when they were accessing his port for some reason but once they were done, he was a little better. Dr. Kennedy looked at his blood and thought his counts looked awfully low so we had to wait for the official results from the lab to see if he could receive his chemo. Everything came back okay and they we able to start the treatment.

Michael wanted to go to the waiting room and play with the toys instead of just sitting in his little cubicle (I can't say that I blame him) so that is what we did. He had a lot of fun with a big bucket of Legos. But, after he received his Benadryl (which makes him sleepy) we coaxed him back to his room and we took the Legos with us.

We put in a new Disney movie Michael received called 'Snow Buddies'. It was just released this week and a good friend of ours, Kathy, bought it for Michael to watch during his treatment. Kathy is one of the most caring and considerate people you could ever hope to meet and we are fortunate to have her in our life. She volunteers at her local library and has story hour for the kids once a month. She always brings Michael whatever craft she has for the kids and he loves doing them.

When the Benadryl started working, Michael got very tired but fought going to sleep so he got a little difficult to deal with and a little whiny. Also, the unit officially closes at 4:30 pm so the Child Life Specialists came and took the Legos back and he didn't like that. It was after 5 pm when we left the hospital and Michael said he was hungry so we stopped and had some dinner. Then he feel asleep in the car and we were able to just put him to bed when we got home.

So far Michael is feeling good. (Jeff & I thought he got awfully pale during his treatment this week.) He is eating scrambled eggs for breakfast and his appetite seems better than last week. For the next 2 weeks, Michael only has to receive the Vincristine. That is the drug that is pushed not dripped so it will only take a couple of minutes. It also doesn't cause the nausea so he won't have to have the 4 anti-nausea drugs. It is the drug that is dependent on good blood counts though so hopefully they won't go down any more this week. I will keep everyone posted. Keep Michael in your thoughts and prayers, JoAnne.

It's report card time...

Michael brought home his second report card yesterday and his Dad & I are very proud of him. He made improvements in many categories and maintained the ones that he had already done well in. In addition, his teacher wrote the following wonderful comment:

"Michael seems enthusiastic about learning and he's widened his circle of friends. He's very caring and protective of those closest to him. It warms the heart to watch that."

We're glad that there doesn't seem to be any of the learning or social problems we were so worried about just a few months ago! In fact, Michael & I have started working in some learn to read books that Jenny picked up for us. Life for us may not be what many 4 year olds and their families have, but then Michael has experienced extraordinary things for his young age.

Before bed last night, Michael brought out his play medical kit. He told me it was time for my "treatment". He scrubbed my tummy where my "port" was until it was "squeaky clean". Then he used his play syringe to draw some of my blood. After he checked my blood, he proclaimed that it looked good enough for me to receive my treatment. He looked at my "chart" to see what the doctor had ordered and then he gave me my medicine with his syringe. He told me it wouldn't hurt and I could take a nap while I received my medicine if I wanted. After I had gotten all my meds, he removed the needle and put a band-aid over my boo-boo.

So, although Michael knows about things that children shouldn't have to know about. And although he has a vocabulary that would rival a first year medical student, he is still just a little boy at heart. And he amazes us more and more each day. As always, please keep Michael in your thoughts and prayers, JoAnne

And now the rest of the story...

I mentioned in my last post we were at a very nice hotel but I didn't give many details. It was a beautiful, brand new hotel and there were only a handful of guests and we think we know why. The hotel was in the middle of nowhere. It was in a small town on Wenchell Road. In this town there is also a Wenchell Drive (which we found first) and Wenchell Lane (which we found second). So after 40 frustrating minutes of driving around, we finally came upon it in the middle of some farmland. There was NOTHING around it (though we did see plans for a theme park being built next door.) But, it was a very nice hotel and it had a pool so we were happy.

Almost immediately after I posted Friday night, things took an unexpected turn. Michael had fallen asleep and Jeff & I were settled in watching TV and having a glass of wine when *poof* - the power went out. We looked out our window to see if it was just the hotel or if everyone around us was without power. There weren't any buildings across the street so we couldn't tell. So I went down to the end of the hall but there was nothing outside those windows either. The other end of the hall was the same way. Now it hits us just how isolated we are.

I met some other guests in the hall and they said it was just our hotel and that the young girl at the front desk didn't know what to do so she had called the manager, who was on her way to the hotel. So we watched out the windows for the next hour waiting for the manager to arrive when we see a car slide off the snow covered road leading to the hotel. We figure this HAS to be the manager. The poor woman gets out of her car and makes the trek down the road, up the driveway and across the parking lot in the cold and blowing snow.

At this point, Jeff turns to me and says "I think I saw a horror movie once that went like this." We both got laughing and made a pact not to open the door to anybody in a hockey mask carrying a chain saw. Then we nervously double checked the lock on the door and waited for the power to come back on. After about 2 hours it did come back on and we enjoyed the rest of our stay. Michael went swimming the next morning after breakfast and then we headed home. We will go to MOST on one of our next trips.

Michael gets anti-nausea medicine for 24 hours after his treatments so he was fine on Saturday. Unfortunately, Sunday wasn't as good of a day. He woke up nauseated and vomiting so we gave him his medicine all day Sunday. Then the same thing happened yesterday and he wasn't up to going to school. He hasn't had much of an appetite all week either.

I'm relieved to say that today is a better day though. He ate breakfast and is now at Robin's house. I will talk to the nurses this Friday and see what they think. The only thing I noticed last Friday was that Syracuse doesn't give as many fluids between the medicines to flush Michael's system. I will ask if that could make a difference. Or perhaps it will just be like this with some good weeks and some bad. I guess time will tell. Keep Michael in your thoughts and prayers, JoAnne

We're snug as a bug...

Michael had his first treatment in Syracuse today. It went well. And so far - no side effects. We are settled in at a very nice Syracuse hotel tonight (and we are warm and very comfy). There was a bad winter storm both at home and here today so we decided to make our trip a mini-vacation and wait out the storm since we drove through it all to get here today - heavy snow, sleet, freezing rain and finally plain rain.

Michael has been swimming already and we just came back from a nice dinner. The hotel has a breakfast buffet in the morning (and Michael loves breakfast buffets). Then, weather permitting, we are going to go to the Museum of Science and Technology (MOST) tomorrow before we head home. They have a new exhibit on caves that we would like to see.

As far as Michael's treatment today, there are some things we really like about Syracuse and some things we prefer in Rochester.

The treatment area in Rochester is a nicer setup. It is a large toy and craft room. Here they have cubicles with a recliner and a TV with VCR & DVD player. Michael was upset there weren't a lot of toys to play with like Rochester but watched a movie and then took a nap. There are toys out in the public waiting room but it would be hard (but not impossible) to play out there and receive his treatment.

We liked the staff's routine here though. The nurses sit right in the room and give the next medicine as soon as one is done. In Rochester the nurses don't stay in the play room and just come and check once in a while to see if he is ready for the next drug. Since Michael gets a total of 6 different medicines, the quicker they get the next one hung, the quicker we can leave.

Keep your fingers crossed that Michael has another great week. I will keep everybody posted. JoAnne