Feeling Much Better

Max is feeling much better. Yesterday, he seemed to be on the mend a bit because he was less clingy and more whiney and demanding. However, the fever was still around. However, it went down a bit after giving him a bath last night, and when we went in to check on him around our bedtime, he felt cool to the touch. He woke a couple of times over night, but woke up without a fever and it stayed away all day, even in the afternoon. He was more prone to crying and tantrums than normal, but other than that, he seemed like normal Max. What a relief.

His doctor was very pleased to hear that his fever was gone. He doesn't see the need for any follow up unless something changes. As long as he continues to feel well, we won't need to do anything until his regular appointment next Friday.

Thanks to all the people who helped us get through this.

Quick Update

Max is still running a fever but had a decent day. Tylenol or ibuprofin lowers it, but as soon as it wears off, the fever is back. He was in pretty good humor today, though.

It doesn't look like we will have to head back to the hospital this week unless something unexpected happens like he takes a turn for the worse or the cultures grow something. Hopefully he will start feeling better tomorrow.

A Scary Weekend

Lauren was sick last weekend. She ran a fever of close to 103 for three days straight (though it went down with Tyelonol) and still had a fever on the fourth day. All last week, we worried that Max would get sick, but he didn't. Saturday morning, as I was getting ready to head to Boston for my Girl's Weekend, I said that I was relieved that he had avoided it. Famous last words. Max came down with a fever around dinner time on Saturday night. Josh realized things were off and checked his temp and it was 101.5, so he called me and then called the pedi hem/onc on call, who was one of the doctors that we know well. She arranged for a room in the peds ward and Josh dropped Lauren off and a friend (our savior)'s house and headed in. They took blood to check for viruses and infection, gave him some Tylenol and planned to keep him at least 24 hours.

He woke up feeling good on Sunday morning, so they decided to release him early, but as they were doing the paperwork, he woke from a nap saying he needed to throw up, which he did, and I realized his fever was back. They watched him to make sure he wasn't getting dehydrated and finally sent us home around 9PM. His fever was back and high (102.6) by then, but they gave more Tylenol and you could see that he was feeling better before he fell asleep on the car ride home. He is sleeping now. We have to check in with ped hem/onc tomorrow. I suspect that despite the vomitting he has the same thing that Lauren had. Knowing that makes me worry a bit less, but I do hope he recovers quickly.

His platelets were down to 92 on Friday night. Everything else was really wacky (WBC 7.1, high ANC, low HCT) but they think those are because of whatever he is fighting.

I will update this tomorrow.

When Does the Worry End?

I am tired of worrying. Maybe I shouldn't be worrying. Max seems to be doing very well. But, his platelet count seems to be dropping. I talked to his doctor on Tuesday and he seemed very optimistic. He said that as far as he is concerned, Max's numbers are stable. Blood counts fluxuate significantly, and he told me I shouldn't worry. He was thrilled with his ANC, which has been way up. He started making plans for the end of the treatment. I felt better. Then, he had another blood test on Thursday and his counts were down again. They are not down a lot, and they are great compared to where he was from July to January, but none the less, they were down. It worries me. I am tired of being worried. Every night when Max gets ready for bed, I look him over and evaluate every bruise on his body. He is an active three year old who loves to jump and run and has what are probably the normal three year old bumps and bruises, but I end up looking at every single one of them. Do I know where this came from? Is it darker than it should be? Every sneeze, I worry. Lauren gets sick, and I worry. It is exhausting.

For the first time I really see Max getting tired of all of this, too. Thursday morning, when I was putting the numbing cream on him in preparation for the nurse's visit, he told me he didnt' want any more blood tests. He was great as usual when she was there, but at the end of the day, when I asked him if he had had a good day, he said it was a good day, but not for him, because he had had a blood test. He again told me he didn't want anymore blood tests. I didn't know what to tell him. Even in the best of cases, he is looking at several more months of tests at least once a month. He will still need to be checked multiple times a year after that. Eventually, he will go to once a year. But I don't know when that will be. He has been so strong. I wish I could tell him it will be over soon, but it won't.

Max really is doing great. He is happy and active most of the time. He loves to play in the snow and is disapointed to see it melting. He enjoys playing in the mud, too, though, and will be happy when we can start going to the zoo and the park regularly again. I have been trying to do more activities with him during the day to stimulate him. We do a lot of art, and have been baking regularly. This week, we planted some seeds for our garden. He wants to grow pumpkins and carrots and melons and corn. He really wants to grow "my very own corn." I have never planted corn so this should be an adventure. He is starting to work to learn his letters, too. It is fun to watch. He is a smart boy, and I am trying to give him opportunities to explore and learn. I don't think I am doing as well as his preschool teachers and Miss Ellen did, but I am getting there. We have fun.

I didn't get all the numbers on Thursday. The nurse called me when I was in the car and I couldn't write things down. These are from memory, and I forgot to ask for the white count.

HCT: 30
HGB: 10.9
PLT: 95
ANC: 1700

Fun in the Snow

I just wanted to post this picture. Max looks great and has plenty of energy. He was thrilled that his soccer ball reappeared after being buried in the snow for the last few weeks.

A Very Late Post

I need to stop making appointments on Fridays. The clinic is crazy busy on Fridays and I always get home exhausted and then I don't post. Sorry for the delay, everyone.

Max's CBC numbers were good again last week, though his platelets were down a bit, which made me nervous. His doctor has been out of the hospital for the last month, so we didn't get to talk to him. I suspect there is no significance in the drop, but it was the first time the numbers had gone down and it has worried me some. His neutrophil count, on the other hand, was over 2000, which was the highest it has been. He continues to do well and was great at the hospital as usual. One advantage of going on Fridays is the art therapist is there. He really enjoyed drawing, painting, and playing with modelling clay. It really was a very easy appointment.

The good news was that last week, we had an early taste of Spring and were able to do a lot of things outdoors, including visit the playground and the zoo. The zoo trip was especially nice for all of us. Unfortunately, Lauren caught something during one of our outtings (probably the playground) and has been sick since Thursday, but it was so nice for all of us to get out, see other people, and have a change of environment. We have all been pretty stir crazy being stuck inside during the brutally cold weather.

I have not had a chance to talk to his doctor yet, but I suspect we will go back in three weeks and that his nurse will come late next week. I will give them a call on Monday and confirm that.

I have misplaced the counts printout but this is what I remember.

WBC: 4.4
PLT: 209
ANC: 2014

His HGB and HCT were in good shape. In fact, his HGB was in the normal range.

We have just about a month left on the medication. I am hoping that when he finishes with the cyclosporene, his mood will level off a bit, though I realize he is 3 and therefore prone by nature to meltdowns. I hope they will be less severe, though.