Close to Normal?

The visiting nurse came today. Max's regular nurse was out sick, but her backup was very nice, and Max wowed her. Because he has been so great with all the tests, I just assume that all kids are this good, but, as she was getting her stuff together, Max was asking questions, including if he could cry (he always asks this and never really does). She said of course, and then said to me that most kids are already crying by that point. I don't think she really believed me when I said that his crying was mostly for show until she had finished. It probably hurt more than normal, too, because she was early and I put the numbing cream on late.

His counts were amazing. His ANC was in the normal level and everything else, except for the white blood count, are getting closer and closer to normal. The white count will stay low as long as he is taking the cyclosporene. His platelet count was over 100! This is really feeling real now. We have been getting together with people more and more, trying to resume as much of a normal life as possible. He still can't go back to school until next fall, but we stopped in to visit his preschool after they had let out for the day to sign him up for next year. He was thrilled to see his teachers again. They couldn't believe how much he had grown. It is nice to be planning for the future again.

WBC: 3.9
HCT: 32
HGB: 11
PLT: 109
ANC: 1521

A Good Phone Call and Contemplating a Scar

Max's doctor called this evening. They have been tracking his reticulocyte count since the beginning. This is the percentage of young red blood cells in the same. His reticulocyte count has been around 1% since they started tracking it in July. In a normal situation, a person should have a reticulocyte count of around 1%, but, if you are anemic, the bone marrow should be making extra baby red cells to make up for it, so that count should be higher. If someone is anemic and they have a reticulocyte count of around 1%, then it is an indication that there is a problem with their bone marrow. Back in November, Dr. Ebb said he was hoping to see a number in the 4-5 range. (It was still between 1 and 2 back then.) Well, they got the results from the sample they took on Friday and it was 4.5%!

Max noticed the scar on his chest today for the first time. I guess he has had a bandaid in that spot since the surgery to put the portocath in back in September. He tends to get rather attached (no pun intended) to his bandaids and won't let us take them off, so I am usually talking him into letting me remove the one from the last test in order to put the numbing cream on for the next test. In other words, there is always something in that area. Well, today the bandaid fell off. I hadn't noticed, but Max saw the red scar and asked me "What kind of bandaid is that?" I told him it wasn't a bandaid, but that it was a scar, and tried to explain that when they put the thing in his chest for his blood tests (it leaves a raised spot on his chest, so you can feel it), they left a scar. Then, I showed him a couple of scars on my body (he wanted to see the one on my chest but I don't have one, so he had to settle for the couple on my head and arms) and then we looked at the one on Daddy's face from when he was bitten by a dog when he was a child. He told Josh all about how it was from when the doctors put the blood test thing inside of him. He never fails to amaze me.

A Good Visit

Max had an appointment at the clinic today. They drew blood and gave him his antibiotic. His counts were great. They are still pretty far off "normal" but way out of the danger zone. Dr. Ebb said that his platelets were practically high enough to play hockey (with a helmet, of course). It sounds like winter activities like sledding and skiing are not out of the question after all (of course, it is going to be back into the 50s this weekend but that is a different conversation). They are moving him to blood tests every two weeks now. They are not 100% positive that the insurance will continue to cover the home nurse, but I think we are okay for a few more visits, as we just got a letter saying they approved 4 visits. If he only needs tests every two weeks and goes into the clinic every other test, that should get us through until April. I can't believe I am even thinking this way. It is amazing. We actually made an appointment when we left, for a checkup and more pentamidine. We haven't made a normal appointment since this started back in July. It is like walking into another world.

We sat in the waiting room for quite a while today, as it was really busy and bed space was at a premium. Normally, they would have had him wait in the room between weight checks and getting started. He had a great time playing with the toys in the waiting room, and there were other children in there for him to play with. He spent a lot of time playing "Treasure Boat" (it was a pirate boat) and kitchen with a 5 year old boy and trains with a 2.5 year old boy. It was nice seeing him playing with other kids again. The 2.5 year old seemed pretty intrigued with him. His mother told me that he had been pulled out of daycare when he got sick and misses playing with older kids. It is hard to see all these children who are so sick, whose lives have been so interrupted. There was a 7 month old baby with bladder cancer there today. He was diagnosed two days before Christmas. I can only imagine how devastating that must have been. We received such an amazing Christmas gift. They had the opposite happen. The 2.5 year old boy has a brain tumor. He and his parents are from Foster City, CA. MGH apparently is the best place to go for pediatric brain tumors. I recognized that look in his mother's eyes. Fear, exhaustion, disbelief that your child is going through this. And all around us, children who are so sick were playing and laughing.

WBC: 4.6
HCT: 28.8
HGB: 10.5
PLT: 75
ANC: 1196

Happy Days

Max has really been enjoying the outdoors. It was ridiculously warm on Saturday (almost 70) and we played soccer and just ran around the yard like lunatics. We had a ton of fun. Max seems to have more energy, though his endurance is not what it used to be. I am going to make an effort to run around with him more and more to get him (and me for that matter) back into shape.

Today we went to the MGH pedi hem/onc holiday party. It was the first time that Max has been in a big group of people since June and he was pretty shellshocked at first. But, he has always been cautious in large groups, so some of that is just his personality. He did eventually warm to it, though. He didn't really partake in any of the activities, preferring to watch from a distance, but he enjoyed the food and, while initially afraid of Frosty the Snowman, was happy to meet him once he discovered he was handing out presents. We had a nice time. It was interesting to meet other families who have been or are going through similar things to us. It was also fun to see the doctors and nurses outside of the hospital environment. 

Up and Up!

His numbers just keep getting better and better.

WBC: 3.5
HGB: 9.5
HCT:27
PLT: 56
ANC:1435

They are actually talking about skipping a week and only testing every two weeks. He does need to go in for a port flush and pentamidine around the 13th, though.

Other than throwing up all over me yesterday and having a runny nose, he seems to be doing great. We are so thrilled.