CBC 05/17/2007

Max had his first CBC since going off the meds. His numbers were down a bit. I honestly don't know what we are supposed to expect at this point. Nothing was horrible, but the ANC is a bit lower than I would like to see. The white count bounces around so much, though, that it is hard to know where it was yesterday or tomorrow. I haven't spoken to the hospital yet, but I am assuming they will stick with just having him come in two weeks from tomorrow.

He looks great. :) We have been having a lot of fun. His ANC is about 500 so I am assuming we can continue to do stuff outside.

WBC: 2.9
HCT: 28.9
HGB: 10.2
PLT: 126
ANC: 812

Looking Good

Max has been enjoying the good weather, doing a lot of running and jumping, though we don't have to be outside for him to find an excuse to jump as high as he can.

I also couldn't resist this picture of him peeking out of the slide. The kids love this structure. I am so glad we have it.

Great News Today - CBC 5/4/07

The last two weeks have been really scary for us. We thought we saw some petikia on Max's neck last Sunday. Then, we thought we saw more on Tuesday. We were pretty sure that his platelets had crashed. We did not get him tested early, because he had to go in on Friday for Pentamadine, and we wanted to avoid an extra needle stick if possible, so we have basically just been worrying and waiting. Today was the day. I took him in early, they tested him by nine, and then I waited some more. Max had a blast playing with one of the Child Life assistants and the Music Therapist. Finally, Dr Ebb came in to examine him and gave me the numbers. His platelets were actually up! Way up! 142. His red count was up, too, and his reticulocyte count was at 2.1, so his body is making more red cells to make up for the deficiency. His neutrophil count was down some but still over 1000. We are thrilled. Dr. Ebb told us to take him off the medication starting today. He gets another test done at home in two weeks and will go back for Pentamadine in a month. We are so relieved.

WBC: 3.5
HCT: 28.9
HGB: 10.6
PLT: 142
ANC: 1010
Retic: 2.1

Spring is Finally Here

Seeing as I wrote complaining about all the rain, I thought I would write again and say that Spring has finally arrived. After all that cold weather, it suddenly got warm and sunny. Really warm. We have been taking full advantage of it. Max helped Daddy and Grampa Richard clean the yard, he and Lauren helped me with the garden, we played with the hose, and went to the playground yesterday. It feels so good to be able to get out of the house.

Late CBC numbers

Sorry. I totally forgot to post Thursday's results. They were okay. His platelets were up a bit, everything else was down a bit, I think (I need to go back and look). The doctor said keep him on the drugs until the end of the month and see how he is doing. If things look okay, they will take him off the cyclosporene. We are very hopeful.

WBC: 3.6
HCT: 27
HGB: 9.5
PLT: 86
ANC: 1584

It feels like it has been raining for a month, but I guess it has only been for a couple of weeks. I am pretty bored with it, though, but Max has been taking it in stride. He doesn't seem bothered by the weather and is perfectly happy playing soccer outside even if it is 35 and raining with high winds. I wish I were as hardy. We have been trying to keep busy inside, too. Today, we made lemonade and played with homemade playdough. I made several colors yesterday, though today it is all one large, redish-orange mass. It still makes a great road for the construction crew to work on, though. Last week, Miss Ellen came by with spin art, which Max loved. He made several masterpieces, which will find their ways to different grandparents refridgerators soon.

Max seems to be doing very well. We are keeping our fingers crossed that tomorrow's test results will be good.

Today's Visit

We headed to MGH today for another dose of antibiotics and a CBC. Josh came for his first full visit (well, he left before we did as he didn't realize it tends to be a three hour stay) and we got to talk to the doctor for quite a while. Max's counts were better than they were when he was hospitalized almost two weeks ago, with the exception of the platelets. His platelets were down to 81. Dr. Ebb spent a lot of time telling us that there was much more good news than bad, though. He was pretty sure I was going to be upset over the platelet count. Actually, so was the nurse, who apparently told him he got to be the one to tell us the results. Anyway, the good news:
1. His HCT and HGB, which had dropped significantly between the Thursday regular CBC a couple of weeks ago and the test at the hospital two days later were both up. They are not as high as they have been, but his body made enough red cells to improve those numbers.

2. His white count and ANC, both of which spiked when he was sick, were back aroud where they had been before he got sick. His immune system seems to be working the way it should be working.

3. The doctor spent a lot of time explaining this to me, but I still do not really understand it, so please forgive the fuzziness. Under PLT comments on the hematology report was the comment Large Forms. Apparently, this is an indication that his body is working hard to produce more platelets. It is kind of like looking at the number of baby red cells or white cells, but I guess platelets are different. Anyway, the doctor thinks that chances are good that Max's platelet count actually dropped lower than 81 and is recovering.

They checked his reticulocyte count (baby red cells) in hopes of seeing a nice high number showing that his body was pumping out lots of new red cells, but it was actually 1.4 percent which is "normal." If it had been <>2 percent. However, as long as his red count stays steady he will be okay, even if it is a low number. And we have seen that his body is capable of producing more as it did over the last two weeks.

So where does this leave us? He offered to do another CBC in a week for my sake, but I couldn't see sticking him if we didnt' need to, just because I am worrying. His counts should be safe enough even if he is still dropping, so there is no need to test any earlier than two weeks from now. As of April 16th, he will have been taking cyclosporene for 6 months, and unless his platelets continue to drop, he will stop taking it after that. He will still need the antibiotic for another 6 months, so we will go back to the hospital in a month for another dose of pentamadine. He will probably continue to get blood tests every couple of weeks for a few more months, depending on how things go. I am sure there will be a bone marrow test, but we didn't talk about when. As long as he seems okay, they are going to remove the port sooner rather than later (originally, they planned to keep it in until Oct, but it has been bothering him, so they would like to take it out as soon as they can. He is growing like a weed, so hopefully he is just outgrowing it, but no sense in taking chances). After the port comes out, he will get the monthly antibiotic orally. He will still be considered immunosupressed until October. After that, hopefully life can return to a somewhat normal state.

So, I guess we just keep waiting and trying not to worry. He seems good, and the nightmares have gone away. He isnt' even grinding his teeth as much as he was last week, so hopefully the stress he was exibiting was just due to the illness and that hospital stay. He is definitely getting tired of this, though. I haven't figured out how to tell him there is still a very long road ahead.

CBC 04/06/2007
WBC: 4.2
HCT: 27.9
HGB: 10.3
PLT: 81
ANC: 1640

Feeling Good Again

Max is finally feeling good again. He wasn't himself for several days after the fever broke, waking up many times during the night. We are not sure if he was having nightmares, but he was waking very upset, and also crying out in his sleep. We were pretty worried that maybe the trip to the hospital had taken its toll. However, He finally slept well again on Friday, and seems back to himself today.

We head to MGH on Friday for his last appointment before the end of the six month treatment.

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.