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.

Haircut!

Max has been asking to get his haircut for days now. I have cut the bangs a couple of times, but it is so thick and I have been afraid to really mess it up. Plus, he tends to wiggle when I do it. Yesterday, I was going totally stir crazy. I am tired of being stuck at home. I miss going places. I miss the aquarium, the museum, playgroup, Miss Ellen's class. I finally decided to take him to the hair cut place. We went after lunch, when I hoped it would be quiet (it was) and Max was great. He sat fairly still for her, and even let her use the clippers, though when she went to clean up his neck and under his ears, he announced he was all done, and got out of the chair. I am just happy to see his face again. I had forgotten what shape it was. Then, we got some sushi (an avocado roll) and headed home. It was a nice outing for everyone. Well, maybe not for Lauren. I think she was pretty bored. :)

A couple of pictures

I promised that I would post some pictures of Max. He looks really good, despite the great need for a hair cut (I finally trimmed the bangs, but I am no professional) and a shave. He isn't a huge fan of getting his picture taken right now, though.

He was given a couple of bears when he was in the hospital. One was a handmade bear made from a Didymos baby wrap. The other was a Build a Bear dressed as Buzz Lightyear. He dressed Didy Bear up as Buzz. The outfit almost fits.

I wanted to go play in the snow, Max wanted to go swim in the kiddie pool. This is the resulting outfit. We obviously didn't go swimming. I don't think we got playing in the pool either.

Winter Fun!

We finally have snow and Max's platelet count is plenty high enough for him to participate in winter activities! We have been taking advantage of this to the best of our ability. Max loves sledding on the snowbank at the top of our driveway by the garage (way away from the road). He also has enjoyed snowshoeing around the yard. After days of being too cold to do much, it finally warmed up and we tried to go skating, but the ice pond had melted. We are going to try again this weekend. Max can't wait to get out on the skates that a neighbor lent him. (They also lent him the snowshoes and some skis.)

I can not begin to express the joy I feel watching him play like a normal 3 year old. I have almost stopped worrying about every tiny fall. I am not sure if I will ever be able to return to the completely relaxed mother that I was, but I am a lot better. We went to the park the day that it was too warm to ski, and I was able to talk with another parent while Max ran round the park, playing on the slides and swings. I didn't let him climb some of the scarier things, partially because it was snowy and his clothing was bulky and harder to manuver in, but other than that, I just let him have fun. I can still feel the panic in the back of my mind, but it is much less prevalent.

CBC 02/22/2007

I want to write these down really quickly while I can, though Max would really rather play blocks. :)

WBC: 4.8
HCT: 32
HGB: 11.3
PLT: 124
ANC: 1920

Yay!

A Late Update

Max went to MGH for a routine checkup a little over a week ago. The appointment went very well, but we took Lauren in that day as well to see her GI doctor (who said she will probably always be thin but as long as she continues to grow we don't have to go back - yay!) and balancing the two children all day was exhausting and I basically crashed when i got home. Then, I left for a much needed two day vacation to visit my brother, without the kids. So, I got behind on my posting. I have some great pictures to post, but things have been busy, so I am just going to post the CBC results and a few comments.

WBC: 4.9
HCT: 30.9
HGB: 11.4
PLT: 114
ANC: 1080

Dr. Ebb is really pleased. He was happy to see the white count continuing to rise and didn't seem concerned that his ANC and HCT were down a bit. He said that his platelet count is high enough for him to go sledding or skating (with a helmet, of course). Now that it is finally cold enough for their to be ice on the pond and it snowed, we will be taking advantage of that. Max has been sledding on the little pile of snow outside of our house, and a neighbor gave us skates that fit him. If the weather cooperates, I might try him out on the skates tomorrow. He really wants to give it a try.

Sharing Experiences

I met the mother of a boy who was diagnosed with aplastic anemia. One of the doctor's at MGH gave me her email and I finally managed to email her a couple of weeks ago. They live a couple of towns over. Her son was diagnosed in the summer of 2003 and has done very well. He is off at college now and is the picture of health. It is great to hear things like that. She is running the Boston Marathon as part of a team raising money for Mass General CancerCare for Children. She is training hard. If anyone is interested in supporting her, here is the link to her webpage: https://www.firstgiving.com/gaylec

It was really nice to talk to someone who has gone through much of the same things that we went through. I can't explain why, but it helps to talk to others who have gone through the same emotional experiences.

Max goes in to MGH on Wednesday for the monthly antibiotics, CBC and checkup. This is our first scheduled appointment since all this started. It is so nice to be at this point.

Settling In

It seems so strange to me that I rarely have anything to post these days. Sometimes, I have thoughts that I consider writing down, but the kids keep me hopping and often it just doesn't happen. Life is starting to feel normal again.

We visited Papa and Grandma Lyd last weekend. We last visited them over Thanksgiving, when Max's numbers had been at their lowest. When we stopped at a rest area, we didn't let Max go in, but instead had him use the potty we brought with us. We worried constantly. This trip was so different. Max was able to go into the rest area (it was almost empty) which was a good thing because it was sub zero outsite. He had a great time looking at the maps and things in the visitor area. We opted not to go out to lunch, but we ran around in the snow and I didn't worry about him falling. He had more energy, though I can see that he needs to get out more. He and I are both out of shape. But, these days he gets out of breath rather than runs out of energy. It was a lovely visit.

We are starting to have friends over again. It has been so nice for both me and the kids. Max's social skills need a bit of polishing, but it is hard to tell how much of that is related to not seeing people and how much is just him being three. He is definitely enjoying seenig people, though. So is Lauren. For that matter, so am I. It is nice to talk to other adults who are not in the medical profession again. The one who really needs more socialization is Cisco, who behaves terribly when company comes to visit. I have been crating him, but am starting to work with him when people come over.

The only things that Max still can't do is go to the grocery store, mall, etc, and return to school. He keeps asking about school, and for some reason has started asking if the doctor said it was okay for him to go to the grocery store. I am not sure why this has come up all of a sudden. Perhaps he over heard something? I don't really miss grocery shopping without a 3 year old, though I do miss the ability to do whenever I need to.

It snowed today for the first time this winter. (Well, we have had a dusting here and there.) The kids are outside playing. I am going to go join them. If the snow stays, maybe we can go sledding. I didn't think we would be able to do that this winter, but he can. We are happy.

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.

No Need for Transfusions, Again. CBC: 12/28/06

Max's counts keep going up. His platelets were at 47 yesterday, which is a huge increase. We are thrilled. We had suspected they had gone up because he doesn't seem to be bruising much, but didn't expect such a large jump. His hematocrit was up slightly, too, so he didn't need to go in for red cells. It is still low, but Max still has some color in his cheeks and an fair amount of energy, so it isn't too bad. His ANC was down a bit, but still over 500. We are so happy.

WBC: 3.1
HCT: 25
HGB: 8.9
PLT: 47
ANC: 589

Merry Christmas Everyone!

In some ways, I can't believe we have made it this far. We had a nice and normal Christmas. Max got up earlier than we would have liked, but managed to wait fairly patiently for everyone to arrive before opening presents. He really enjoyed dragging Uncle Greg everywhere to play. He wore all of us out (well, his sister helped). It was a really nice day.