A Long Year

I just realized that I first noticed signs of Max's illness a year ago last night. We were returning from our amazing trip to Columbus Isle, the Bahamas, and I noticed funny bruises on Max's neck. I brushed it off at the time, but it was the first indication we noticed that something was wrong. Less than three weeks later, he was in the hospital.


He looks so good in the pictures from the trip. But, even just a few days after we got back, we have pictures of Max from when we picked up Cisco and you can see the awful bruises on his legs.


















And just to end on a happy note, a fun picture of Max with Uncle Greg.

It is no wonder that Max's Wish is go to back to "The big swimming pool with the steps and the stairs and the beach where we made sandcastles with Uncle Greg.

Max's Fur

We go into MGH tomorrow for another CBC and checkup, but I wanted to share this. Because of the cyclosporene Max took for 6 months, he is very hairy. He has hair on his arms, legs, back, neck, etc. He even had a little mustache. Since going off the meds, we have seen a definite decrease in the hair. It is such a nice sign for us, to see him starting to look "normal." However, I am not sure how Max feels about this. He likes his "fur" as he calls it. Especially the hair on his arms. He does not realize this is different from other boys his age (got to love being 3) and, to be honest, I don't think it would bother him if he did realize it. Now that we are out with other children, some of the kids have commented on it, either to their parents or to Max. One little boy even asked Max why he had hair on his arms. Max's reply: "Because boys have hair on their arms." The other boy (5 years old) looked at his hairless arm with great concern, wondering why he didn't have hair. It was everything I could do not to laugh.

I am very grateful that Max is going through this at such a young age, as he is young enough to just accept everything he has gone through. He has never been angry or frustrated or scared. He has faced everything with a positive attitude, though he isn't very excited about the blood draws these days. But, he still seems to face it all as an adventure. He still loves to play doctor and told me that he wants to be a "blood test doctor" when he grows up. I tried teaching him the word hematologist, but he told me it was too hard. :)

It will be interesting to see how much he remembers of all of this later in life. He has an incredible memory. It will be also interesting to see what he thinks of it all.

CBC 06/19/2007

Max has a cold, and I expected his numbers to be strange, but I am pretty pleased with them.

WBC: 3.7
HGB: 11.7
HCT: 34.1
PLT: 104
ANC: 1628

Great Results! CBC 06/01/2007

I will try to write more later, but the kids want to play. However, if I don't do it now, it could be days....

We just returned from MGH where Max got his pentamadine and a blood test. The results were as good or better than I could have ever expected. Everything was up. His white count was way up. The doctor was thrilled. He said if the results are this good next month they will arrange to have the port removed.

WBC: 4.8
HCT: 29.7
HGB: 11.2
PLT: 141
ANC: 2060

46% of his white cells were neutrophils!

We couldn't be happier.

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.

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.

The Doctor is Very Happy - CBC: 12/21/06

Max had another CBC this morning and the results continue to be promising. Dr. Ebb was very happy. His platelets were up over 30,000, his ANC is still up over 500, and while his hematocrit was down, it is still high enough to avoid having to be transfused any time soon. He is scheduled for another blood test next Thursday. It seems so strange but he is back to getting weekly blood tests. May it stay that way.

WBC: 3.2
HCT: 24
HGB: 8.7
PLT: 31
ANC: 800

How Strange to Have Nothing to Report

It has been just under a week since Max's last blood test. This seems so strange to me. I am used to having a good idea of where his platelets are, and I honestly have no clue right now. He looks good. There is some bruising and a bit of petikia (I really need to learn to spell that one of these days), but nothing too bad. He has color in his cheeks, so his red count can't have dropped horribly over the last handful of days. It has been three months since he has gone this long between tests and it just feels strange.

Max is really looking forward to Santa's arrival and finally getting to open the presents that have been taunting him from the tree. We are going to see his cousins Anna and Sophie for the first time in months and he is thrilled. We are trying hard to keep things as normal as possible. This whole thing has kept me out of the mall for the most part this season, and I have decided that is not necessarily a bad thing.

The nurse comes tomorrow. Hopefully the news will be good. We are all hoping that our Christmas wishes of a Max on the road to recovery will be granted.

I wish I could take a picture of him right now. He is sound asleep on my lap. He may be getting bigger but he is still my little peanut.

Everything was up!

Okay, the white count was down, but the ANC was way up and that is what really matters.

WBC 3.5
HCT: 27
HGB: 9.2
PLT: 25
ANC: 1050

I am speechless.

CBC:12/13/06

I forgot to post this:

WBC: 3.8
HCT: 25.6
HGB: 9.7
PLT: 24
ANC: 260

No Need for Transfusion!

We drove to Boston today and they did the CBC and much to everyone's surprise, Max's platelet count was UP! It was at 24. They did not transfuse, and would have sent us right home except that he needed to get an IV of a drug to prevent a certain type of pneumonia that the immunosuppressive drugs put him at risk for. This is the best news we have gotten in ages. He has not had his platelet count go up since they started tracking it in July. They are going to recheck him on Friday.

His hematocrit continues to drop, so he will likely need more red cells next week, and his ANC was down under 300 again, but they expect to see that bounce around a lot.

Elton John Lives!

I just had to share this. So many wonderful people have done things for us. I have been overwhelmed by it. We have had friends make enough meals for us so that I should be able to feed the family every post hospital visit this year, lots of offers to take care of our little, exhausting but fun daughter, Max has gotten toys and arts and craft supplies to help keep us busy. Friends drove down from Maine to Boston to donate platelets to ensure that there will be some for him when we go in tomorrow. People have come to the house to play with Max and help me keep my sanity. It has been amazing.

Today, we received a package from someone I have never met that contained a kid's electronic keyboard. Max was thrilled. He is, at this moment, playing "good night music" for Josh. I have a feeling he will make me carry it to the hospital tomorrow. He looks so happy playing it that I had to post a picture.

CBC:12/11/06, Some Good Signs?

I hate to even say it. I am afraid to get my hopes up and then get crushed again. But, his CBC results were better than expected yet again. 10 days after his last transfusion and he still had 20,000 platelets. This was definitely better than expected. The biggest surprise today, though, was his ANC. It was 700. After a couple of weeks at <100, I was happy with last Thursday's 360. 700 was a number I couldn't have even hoped for. Hopefully it will stay up, though I am sure we will still be seeing it bounce around. But, for the first time since July, his body is actually making neutrophils. We are going either tomorrow or Wednesday, depending on when I can get someone to watch Lauren.

WBC: 3.4
HCT: 28
HGB: 9.8
Platelets: 20
ANC: 700

We had a nice weekend. Grandma "Mom" and Grampa Rich came down for a couple of days, we had a photographer come to the house to take family pictures, and Max got to help chop down and then decorate a Christmas tree. He is pretty excited about Christmas and has been walking around clutching his stocking talking about when the "Real Santa" will come and put presents in his "Sock." Now if we can just get a little snow.

No Transfusion This Week! (CBC:12/06/06)

Max's platelets were high enough that the doctor didn't feel the need for him to come in for transfusion tomorrow. He is scheduled for a nurses visit on Monday. The other good news is that his white count was up slightly, and more importantly, his ANC was up to 360. I never thought I would be so happy about an ANC of 360.

WBC:3.6
HCT: 32
HGB: 11.4
Platelets: 42
ANC: 360

Worn Out, In a Good Way.

It seems so strange to have nothing to report, but we haven't even had the visiting nurse here since last week. Max has been doing well. He is going stir crazy, though. He hasn't played with other kids in ages. Today I was able to have a 12 YO neighbor visit this afternoon. She played fort with him (there is nothing he likes more than to build forts out of the couch cushions in the playroom). After she left, he was down there by himself. I was making dinner. I got worried that he was being awfully quiet, so I went down to check on him, and this is what I found. :) Sound a sleep and so peaceful.

Nurse comes tomorrow. We are hoping for a fairly high platelet count so he can get through the weekend without a transfusion. Oh, and an ANC over, say, 100 would be nice, too. I am trying not to ask for too much.

Okay, my brother insists that I let everyone know that Uncle Greg taught him fort.

I never thought I would be excited about 19,000 platelets

Max's platelet count was 19 today. This was much higher than expected. He was only down 10 from Wed and 27 from Monday. His platelets are dropping at a much slower rate than they expected. This is very good news. They did transfuse today seeing as it was Friday. However, next week the visiting nurse is coming on Thursday for a CBC and Dr. Ebb thinks there is a possibility he may not need a transfusion at all next week. We will be keeping our fingers crossed.

The cancer center has art therapy on Friday mornings. Max had a blast. There were a lot of things going on there today and he enjoyed all of them. It was also the shortest visit we have had, which was nice. We were on our way home before 1, and that was with me losing the parking ticket. Max was tired and grumpy when we left, though. He insisted that I wear him on my front (no easy feat) and snuggled in and fell asleep as I went down to the parking lot. I am glad he was comfortable at least. :)

WBC: 2.8
HCT: 32.3
HGB: 12.1
PLT: 19
ANC: 56

Transfusion Update and CBC: 11/29/2006

Max went in to MGH today because he needed red cells and they expected him to need platelets. His platelet count was actually 29, and there is a shortage of platelets right now because people tend not to donate blood during the holidays, so we are going to go back on Friday for the platelets. The transfusion went well, if long. Max enjoyed playing with one of the volunteers, though, so I got a bit of a break. He got hives halfway through, but Benadryl cleared them up.

Dr. Ebb said that they are going to start looking for signs that things are starting to improve. They hope to start seeing less need for platelets in a few weeks. They checked to see how many baby red cells existed in his sample today, and the number was a little higher than last time, but still pretty low (1.3). They are going to be checking that regularly now, though.

The best news today was that his neutrophil count was up significantly. It was still only 319, but that is a lot better than <100.

WBC: 2.9
HCT: 20.3
HGB: 7.7
Platelets: 29
ANC: 319

CBC - 11/28/2006

WBC: 3.1
Hematocrit: 21
Hemoglobin: 7
Platelets: 46
ANC: 64

His red count (Hematocrit and Hemoglobin) are quite low. He is getting a transfusion on Wednesday. By then, his platelets should be low enough to justify more platelets, too. We can tell he is ready for red cells. He still seems to have plenty of energy, but then will all of a sudden stop, sit down, and tell us he needs to take "a little rest." Then, he is up and running again, but the little rests are happening a lot and he doesn't usually do that. His ANC is still scary low. I really wish it would go up some.

How to become a bone marrow donor

This is a video that Max's uncle Greg put together to help get the word out about bone marrow donations. These crazy people show us all how easy it is to order and submit a donor registration kit.

Please, Mom?

We were able to go to Maine for Thanksgiving. Because Max didn't need a transfusion until Wednesday, they were pretty confident he wouldn't need anything Thursday or Friday, so we were cleared to go, despite the really low ANC. We have also been giving the go ahead to take him to places outside, so the day after, we went to Pemaquid Light. It was a gorgeous, if a bit chilly day. The surf was high, because of an offshore storm, and the waves were impressive. We had a lovely visit. Unfortunately, Max really wanted to look through the 25cent telescope thing, and mean mom would not let him. It was really hard on all of us to say no about that. No matter how hard we try to act like life is normal, we have the reminders that it is not. Hopefully next year he can do it. At least the lighthouse was closed, so we didn't have to tell him no to that.

Update for earlier post

The nurse called us back this afternoon. She talked with the doctor and they do not feel that Max needs to go in first thing on Monday. His red count has been dropping slowly over the last close to a month period, and they think it will be okay to just do a nurse's visit on Monday. Then, we will probably go in on Wednesday for platelets and red cells. If he looks pale or seems tired, that may change, but as long as he seems okay over the weekend, that is the plan for now.

More Platelets and CBC

We went in to MGH again today for a platelet transfusion. Max's platelet count was actually a little higher than I expected. It was at 13. He did well with the transfusion though he was tired when we were done and fell asleep as soon as he got in the car.

His counts were not exactly where I would have liked them to be. His red cells are down enough that they will probably transfuse on Monday. His ANC is scary scary low. His white count is down, too. I guess he does have some new cells, though.

The good news is that we were given the go ahead to go to Maine tomorrow to have Thanksgiving with Papa and Grandma Lyd.

WBC: 2.7
Hematocrit: 23.8
Platelets: 13
ANC: 54

Yes, that is 54, not 540, 54. :(

CBC - 11/21/2006 - Well Partial At Least

It was a crazy day, and there was a lot going on when the doctor's office called with the CBC results. I wrote them down, and now I can't find them. So, this is what I can remember. His platelet count was 24,000. He is going in for a transfusion on Wednesday, though his gums were bleeding a bit today, so we may reconsider that tomorrow morning. His hematocrit was in the 26 range I think, and his ANC was 230. The doctor's office seemed surprisingly pleased with that ANC number. Maybe I am overobsessing about the ANC.

No More Steriods!

Today was the last day of the steriods. We have been tapering them off gradually, and the puffiness in Max's face has really gone down. He is starting to look like our little boy again. The bruise from a fall he took the day we came home from the hospital is finally fading as well.

For some reason, Max says this thing for childproofing a toilet is something for doing blood tests and he declared it part of his blood test kid. I am not sure what it reminds him of. I am going to have to pay more attention at the next visit. Perhaps the tray where they set things up? Maybe it will become obvious the next time he plays blood test.

CBC - 11/16/2006

WBC: 9.6
HCT: 28
Hemoglobin: 9.7
Platelets: 97
ANC: 198

We are very happy about the platelet number. He must have gotten quite a boost from Monday's transfusion. We do not have to go to the clinic on Monday. Instead, the nurse is coming to do another blood draw. Given the results the last two Mondays, he shouldn't need to go in that day. Hopefully he won't need to be transfused until Tuesday or Wednesday. We are hoping to go to Damariscotta, ME to see my father and step-mother for Thanksgiving, but have not been given the green light on that yet.

I am not excited about the ANC numbers. His white count is actually pretty good, but his body is just not making neutrophils. He had 1 in the last sample. :( However, the doctors seems a lot less concerned about the ANC than I am.

Today was the last day of the steriods. The puffiness on his face has gone down already. He looks a lot better. Maybe we will manage to get Christmas pictures afterall.

CBC 11/13/2006

Max went to MGH this morning for another platelet transfusion. It went very well today. No hives! Yay! May that keep up. It was another long day for us, though. The clinic was busy, and we got there a little later than we had hoped, and it ended up being a full day between dropping Lauren off at a friend's house (where she had a blast and napped like a champ.), driving in, waiting for the CBC results, waiting for the platelets, waiting for the transfusion, waiting to see if he got hives, and driving home. Max and I played Don't Break the Ice (or, as he calls it "Break the Ice" because he likes breaking it) and blocks for quite a while. A volunteer also played with him for a bit, so I got a break and actually got lunch today. Max was pooped and practically fell asleep on my back as I carried him to the car.

I talked to the doctor today and he said that he is very pleased with how well Max is doing. His cyclosporene level is still low, so they upped the dose again, but he is going longer than expected between transfusions. His red count has been dropping slowly, but he is still a ways from needing more red cells. His CBC showed new, young red cells, too, so at least his body is making some. His ANC was lower than I like to see (360), but the doctor said that was actually better than he expected at this point. We are still only a couple of weeks into this, though. It seems like he started treatment months ago, but it was only three weeks. This is going to be the longest three months of my life.

Max is still doing very well emotionally. He is also getting very good at play-acting taking blood. Who knows. Maybe he will be a doctor some day. Given the hours that his doctors work, I am not sure if that would be a good thing, or a bad thing. :)

WBC: 6.0
Hematocrit: 28.7
Hemoglobin: 10.5
Platelets: 15
ANC: 360

CBC 11/09/2006

WBC: 7.4
Hematocrit: 31
Hemoglobin: 11
Platelets: 65
ANC: 440

We are heading in for more platelets on Monday.

Max did really well when the nurse accessed his port today. He said he was going to cry, but only pretend cried, and sat perfectly still. This is better than I did when I got my flu shot today.

The Bookmobile came today. They have added us to their rounds. What a wonderful service. The weather was gorgeous so Max rode his bike, too. We had a good day.

CBC 11/6/06 and update

Max went to MGH for a clinic visit today. They have been having trouble getting a cyclosporene level that they are comfortable with. It keeps coming back low. So, Dr. Ebb wanted to do it at the clinic and did a CBC while he was there (of course). They were assuming his platelets would be in the teens or lower, but they were happily surprised to find out that they were at 21. However, he decided to transfuse anyway as Max would probably have needed a transfusion by tomorrow or Wed at the latest and seeing as we were there, we did it. I am not sure how I felt about that, but I have to say that the idea of driving back down tomorrow did not appeal.

Max did well with the transfusion, but got a few hives afterwards again. They gave him Benadryl again, and they went away, but this is worrying me.

He is getting used to being accessed through his portacath. He still isn't excited about it, but is getting much better at sitting still for it. As he got used to getting accessed through his arm and also taking his medicine (which he is wonderful about now), I think it will not take much longer before he is used to the portocath.

CBC Results:
WBC: 8.4
HCT: 32.4
HGB: 11.7
PLT: 21
ANC: 170

Dr. Ebb was happy to see the platelets, white count, and hematocrit numbers. However, the ANC level was an unhappy surprise. After last weeks rise, 170 was very disapointing to me.

The plan for the week is to have another nurse's visit on Thurs and then either transfuse platelets on Friday or Monday depending on the results.

Happy Boy

I wanted to post a picture of Max so that everyone could see how good he is doing. He is definitely struggling a bit emotionally, but he is enjoying life and was thrilled when he got to go out exploring today. He put on his sunglasses so his "eyes won't be bright" and packed his backpack and was ready to go.

We are heading to MGH tomorrow morning. I will update in the evening.

Run run run and enjoy the weather!

I have figured out that the best thing for Max and for me right now is to get him running around. He has so much energy and it has to be burned off. Today is the last day of the full dose of steriods. Hopefully, he will be a little bit less amped up next week. Today, we played "there are dinosaurs in the house.... run!" which involved a lot of shrieking and running around. It was actually a lot of fun. Apparently we were very loud, though, because there were police investigating something next door (long and not too pleasant story) and one came over to make sure we were okay. He took one look at us, though, and said "Oh, I have kids, sorry to bother you" without even saying why he was there first. Later on, Max and I played soccer in the backyard. These bursts of energy really seem to help him mellow out later, though the energy is always back with a vengence. He is happy, though, and that is a very good thing.

CBC - 11/02/03

I fell asleep last night when putting Max to bed and forgot to update the blog. :)

His nurses visit went fairly well, though he hasn't really gotten used to getting accessed through the portacath and wanted her to take blood from his arm. But, I think he will get used to it fairly soon. It is much faster and easier than the old way to draw blood. His counts were pretty good. No need to transfuse right now, though they want us to come to the clinic on Monday to check him out, and expect to transfuse platelets then.

Platelets: 81
Hematocrit: 35
Hemoglobin: 12.0
WBC: 10.1
ANC: 700

Things are pretty good. Max is definitely moody and hyper from the steriods, which is difficult for us. Imagine all that lovely three year old behavior; tantrums, sudden mood swings, crying over the tiniest things, etc., multiplied about 10 times. Then, imagine a child who literally can not stop moving. He has kind of been beating on us physically because he is bouncing off the walls. That actually makes things sound a lot worse than they are, though. He is generally happy. We have been playing outside a lot to burn off that extra energy, and he is doing better than expected. His body is going through platelets slower than they thought it would (they expected transfusions every 3-5 days and he has needed them more like every 7-8), his red count has been holding fairly steadily, and his white count is actually up, thanks primarily to the steriods. So, we are pretty happy with things.

Playing outside has been very important. He hasn't been napping much, but if we run around outside, he is more likely to nap. There also are less sharp corners outside, so I am a bit more relaxed. We went to the Cranberry bogs on Wed and met another family and picked cranberries and he had a ton of fun. Yesterday, we just ran around in the backyard. Thank goodness it only rained in the morning. I will take them to the park today, I think. The change of scene is good for me, too.

An Uneventful Clinic Visit

I took Max to the clinic for a platelet transfusion today. His platelets were at 9 and he actually showed signs of bleeding for the first time since this all started, so it was good that they transfused him. It was an easy visit. Max watched some Dora the Explorer and I knitted. They were doing trick or treating with the kids who could go out to see other kids (not Max) but Max got a ton of Halloween stuff. He did break out in hives again after the transfusion, though. They gave him some Benadryl and watched him for 15 minutes, then we headed home to a delicious meal made by Josh's sister, Joanne.

His Hematocrit was 35 today. Down a bit, but still good. I wonder if it was down because of the bleeding. His white count was 3.5. The most exciting thing was his Absolute Neutrophil Count. It was over 1000. Even the doctor was happily suprised by that.

The nurse will do another blood draw on Thursday.

CBC Explanation

There have been a lot of questions about the CBC results, so here is a brief explanation of the numbers to the best of my ability.

CBC (Complete Blood Count) test measures the number of red cells, white cells, hemoglobin, and platelets. It also measures the fraction of blood composed of red blood cells (hematocrit). They usually also test for the number of each type of white cell. With Max, they have been particularly interested in the number of neutrophils.

Normal values vary some, but here is my understanding of normal:

White Blood Cells: 4,500 - 10,000 (they usually report it in thousands, so we are usually told that Max's WBC is, for example, 3.5. This means 3,500)
Hematocrit: 40.7-50.3%
Hemoglobin: 13.8-17.2
Platelets: 150,000 - 450,000 (These are also usually reported in thousands. So, Max's platelet count was 9000 today, and we were told it was 9.)
Absolute Neutrophil Count: 1,500 to 8,000. The ANC is derived by multiplying the White Blood Count (WBC) times the percentage of neutrophils in the WBC count.

Max's platelet count has been under 30,000 (without transfusions) since July. Under 30,000 usually means you will have trouble clotting and that is why we saw a lot of bruising on him. Under 10,000 means you can get spontaneous bleeding. They will most likely transfuse Max any time he gets under 10. They also will likely transfuse if his hematocrit is under 20. I haven't figured out much about hemoglobin levels.

Because white cells only live for about a day, transfusions don't help. That also is the reason why Max's white count fluxuates so largely. His absolute neutrophil count (ANC) has been a larger issue than his white count as a whole. The neutrophils fight bacterial infections and if you have an ANC of under 500, you are at high risk for infection. The lower that number goes, the more at risk you are. Normal is > 1,500, 500-1,500 is considered "safe" and <500 is considered low. Max's ANC was pretty steadily 400 for a very long time, then started dropping. However, since they started him on steriods, it has been up.

I hope this helps a bit.

CBC - 10/30/06

I don't have the ANC number yet, but here is what I do have:
Platelets: 12
Hematocrit: 37
White Cells: 8.5

His platelet count is low enough that they are going to transfuse as planned tomorrow afternoon, but not so low that he needed to go in tonight.

Hanging at Home

Sorry for the delay in posting. I think I have been running on adrenaline and seem to have crashed a bit over the last couple of days. Usually I post after the kids are in bed, but I have just been going to bed instead.

The last couple of days have been going fairly well. Max has been moody, though today has been much, much better. He is also not sleeping very well, waking up a couple of time each night calling for us. We have spent a lot of time sleeping with him. His first morning home, he fell and hit his cheek, so he has a huge bruise, and he has his sister's cold, but he seems to be doing pretty well, and we have done a lot of running around today. He even got to visit his Granparents Mazgelis yesterday.

We met the visiting nurse on Saturday and she came by today to do a blood draw. Max likes her and the visits went very well. It is a huge weight off my shoulders that she is coming here rather than us having to go to the hospital for all blood draws. I am waiting anxiously for the results as it will determine whether or not we go to MGH tomorrow for platelets. He looks pretty good, though. Not too bruisey.

Max broke out in hives again yesterday after having a piece of bread that had eggs in it (I didn't know), so it really does look like the egg allergy is back in force.

I will update when I get the CBC results.

He's Home!

They sent Max home today. They didn't even transfuse platelets, because they were still at 41. He got a huge bump from the transfusion yesterday and his hematocrit was 37, so he should be good for red cells for a while. His ANC was up to 680, too, which is nice. They were thrilled by how well Max did. So, we packed up and headed home with a huge bag of medicines and a chart of what to give when. Max got his cyclosporene (twice a day for the next six months) this evening and took it very well. He pretended to give some to the Buzz Lightyear Build-a-bear that he got at the hospital from a wonderful woman. He got to take a stethascope home, too, and has been "listening" to everyone's hearts, and feet, and ears, and.....

A home health care nurse comes on Monday morning to check his CBC and also his cyclosporene level, which was a little lower than they want. I guess there is a perfect level that they are shooting for, and we will fiddle with the amount he gets every day until we reach that level. They expect to need to transfuse platelets soon, and Max has an appointment at the clinic on Tuesday afternoon for that. However, that could change. Ideally, he should be able to get most or all blood products going forward in the clinic, which will be much nicer than having to do it in the emergency room or the pediatric ward.

We are very pleased with the care that Max has gotten up to this point. I can not say enough good things about Mass General's pediatric ward. He didn't really want to go home at first, because he was having so much fun there, and the staff is excellent. We feel very lucky to have such a good hospital so close to us.

Now we are back to watching for fever and bleeding and will have to go to the hospital for either one. Other than that, we give Max his medications, check his blood levels regularly, and wait to see if this is working.

Looking Good, Fingers Crossed

Max had an uneventful day today. He got a decent bounce from the platelet transfusion and his platelets were up to 51. He was in pretty good humor, though a bit bouncy and small things upset him today. However, he had a nice day. His grandparents visited, as did his great aunt and uncle. There was a halloween event at the hospital, too, and he really enjoyed that. So, it was a fun day for him. He is starting to sound ready to come home, though. And, if things go well, he will get his wish. As long as he does not spike a fever, he will be coming home tomorrow. We are trying not to get our hopes up too much, but are really hoping he will be good tomorrow. In preparation, they transfused red cells even though his count was still over the level that they usually transfuse at (about 20). The figure he would have needed to be transfused before the end of the weekend and they wanted him to have a good weekend. He may get another platelet transfusion tomorrow as well. The ATG eats up the platelets. They also gave him a dose of an drug that prevents a nasty pneumonia that is common in patients with suppressed immune systems. They were arranging for a home health care nurse to come to the house on Monday to take a blood sample to run a CBC. Because of the portocath, he needs a nurse trained in accessing one to take blood samples going forward. Hopefully the insurance company will approve it.

That is about it for tonight.

Art and ATG

Sorry for the late post. Blogger was down last night.

Max got his final dose of ATG yesterday. After sending it up so late on Tuesday, the pharmacy sent it up very early so it was done at a much better hour. Max once again tolerated it very well. His platelet count was down to 6 yesterday morning, so they transfused first thing. This wasn't a surprise to us. Because they didn't run a repeat CBC until after the ATG was done, I didn't find out what his platelet count was after the transfusion. Hopefully he got a good bump. His hematocrit was 23 and his ANC was up to 680, which is probably due to the steriods, but we will take that number. :)

The art therapist worked with Max yesterday and he loved her. He got to do a whole bunch of messy things. The therapist said it was nice to see a child who enjoyed art. Apparently a lot of the kids that she sees are not interested in it. She actually came back in the afternoon and played with him as well. Boston Parents newspaper (or something like that) is doing a story on the program and they took pictures of him decorating masks.

They will watch him for a couple of days now and see how he does. If he spikes a fever, then his stay will be extended. If not, he gets to come home.

Hyper but Happy

I completely report that we made it through 4 out of the 5 days of the ATG, because the pharmacy got it up really late so it didn't get started until 4:30 and it takes 6 hours and I am going to bed as soon as I finish writing this, but he was doing well halfway through. He is feeling good, though the steriods have really amped him up. They doubled the dose of steriods to counteract the ATG. The good news is that so far, he still is having a good time. He was just wearing us out. :)

Grandma and Grampa Richard visited today and Grampa did some painting with him while I got out for a bit. He loved it. He also got music therapy, made a halloween card with one of the child life specialists, and did a lot of painting with me. It was a very messy day. When they started his IV of Benadryl, he conked out for a much needed nap, which is good because I was a bit worried that he would bounce off the walls and pull his IV out again.

His platelet and red cell counts were up today. That was unexpected and a happy surprise. So, no transfusion today.

3 Down, 2 To Go

Max made it through his third dose of ATG. The hives yesterday had everyone pretty squirrely. I spent the day talking to doctor after doctor about when we saw them, what he had to eat, if anything was different, etc. This included a conversation with a dietician (checking to make sure absolutely no eggs sneak in) and two allergists. The second allergist recommended that if he broke out in hives again during the ATG, they were going to stop giving him equine ATG and move to rabbit ATG. I am not sure if this would mean starting over or not, but I do know that Max's doctor told me rabbit ATG is less effective, so I would really like to see him finish with the equine. I understand his point, though. They do not want to risk a serious allergic reaction. We watched him very carefully today, and he did not seem to react to today's dose of ATG. He had a few hives before they started, but they actually dimished during the 5 hour IV. I was very relieved. They upped his dose of steriods today to further reduce the chance of side effects. This will probably make him even more moody. However, so far his mood is still very good.

He had a lot of fun playing with other people today. The Child Life Specialists came in with finger paints, stickers, sponges, and other projects. Max painted with a student Child Life Specialist for quite a while, which gave me a chance to have lunch. We also got a visit from a scoial worker whom he is very fond of, and not just because she gave him a book. He gave her a hug and kiss before she left and she said it made her day. Max is still charming the pants off everyone. I wish I had his energy and enthusiasm. We also played with a great playdough kit that was sent to him. He made a flamingo and an elephant and then we made a house for them. He still loves his play.

The highlight of Max's day was a visit from Lori the music therapist. She was on another floor but came to see him and brought the piano back. She will come by tomorrow as Tuesday is her regular day. He just loves her.

His platelet count was pretty low today (13) and they will probably have to transfuse again tomorrow. However, he got a full week out of the last transfusion and that was better than expected, so we are happy. His ANC was up significantly from yesterday. Who knows what it will be tomorrow, but is was nice to see a higher number.

Here's to thinking happy Max and no hives in the future.

Day 2

We got through day two of the chemo. Max has already gotten much better about taking his oral meds. All it took was a little patience and a couple of M-n-Ms. He got up in what Josh described as the best mood ever, which surprised everyone. It was nice. He got a sponge bath today, which he thought was a ton of fun. He got to play with stickers and watch movies. Uncle Paul visited. He had a fun day.

This was day two of five days of the ATG and he is having some problems with it. He is breaking out in hives from it. We noticed them this morning during his sponge bath. They gave him benadryl and then went away, but returned halfway through his second dose this afternoon. They stopped and gave him more benadryl and then finished the dose. He broke out again by the end of the dose, but at least they were able to get it all in him. Only three more to go. Hopefully they will be able to continue as planned. They are going to be watching him very closely, though.

His platelets were 21 today. They will probably have to transfuse again in a couple of days. His hematocrit, however, remained unchanged. His ANC was the lowest that it has been. Hopefully that will be higher tomorrow. It really doesn't change anything, but it just makes me nervous. Hopefully the steriods will bump it up soon.

A friend dropped off a large bowl of chicken soup today so I came home to soup and it was a wonderful surprise.

Finally Got Started

Today was a good day. They did yet another xray to look at Max's central line and the surgeon felt that it was good enough to work with. They have been drawing off of it for two days now, but wanted to wait to start the chemo until they were sure they were not going to open him up again. Once the chemo starts working, the risks of infection will be that much higher. Josh spent the night with him again and Uncle Greg and I spent much of the day there. Max was in good humor, and enjoyed cruising around his room in the "go cart" as he called the stroller like thing that they pushed him to radiology in. I think he was pretty happy to get out of his room, too. They started the chemo this afternoon, first giving him his first dose of cyclosporene orally in a some chocolate milk, then later on giving him the steroids and ATG via IV. The ATG was a 5 hour drip and I left before it was over, but his body seemed to be tolerating it well when I left. He also has started taking an anti-fungal, benadryl, and tylenol. Max does not much like taking the oral drugs and it has taken a lot of negotiating, begging, pleading, and even some bribery to get them in him (and they have been giving the benadryl via IV for now) but today was a bit better than yesterday. We were told that the steriods have moodiness as a side effect. This means we should expect sudden bouts of crying for no good reason, mood swings, and burst of anger. So, basically he is going to act three, except more so.

Max's portocath is working well. It has taken him a bit of getting used to, though. But, it is nice that they do not have to stick him with a needle for everything now. We just learned the hard way that he can't run around when on the IV. He was playing and bent the needle, so it had to be removed and a new one put in. This involved a lot of panic on Greg and my side and a lot of screaming on Max's side because he just didn't want to sit still for it and there wasn't time to explain to him what needed to happen (they had to get it back in before it clotted), but hopefully he will adjust well. He likes to sit up and hold my hand when they put needles in him, and he needs to lie down for this. We will work through this, though.

He has an awesome view of Boston Harbor, and can see the airplanes taking off and landing at Logan. Hopefully he won't have to stay too long, but it is nice that his room offers him so much to see. The staff at MGH has been great. Today's nurse, Elise, who will be back tomorrow, was especially wonderful, taking time to really explain everything that was going on.

I guess that is it for now.

"It's a go" to begin treatment

Max had a few more x-rays this morning to look at the positioning of his portacath's catheter. This time we took him down to a digital x-ray machine that he could stand up in front of. He had a great time pretending to drive the taxi-cab pediatric transport vehicle, or the "race car" as he called it. I made sure we took the long way through intersections and had to make lots of u-turns. Whee! Later on, Dorothy and her brother Greg came by to relieve me for the day. I did hang around long enough to hear that the surgeon had reviewed the chest pictures and heart monitor data. He decided it wasn't perfect and still hung slightly low, but that going ahead and using it as is was a smaller risk than going in a second time and trying to adjust it. This was great news for all of us, especially Max, who was now finally allowed to have his breakfast!

Wait and see on the portacath

They took another x-ray of the portacath this morning. (Somewhere around 6am this morning they woke us up for this. Do kids ever cooperate first thing in the morning?) They had hoped to get one of him laying down over the x-ray plate instead of sitting up in front of it. Alas, after some failed negotiations, they got another image with him sitting up in front of it. Well, after reviewing the two x-rays the surgeon decided that it wasn't so much that the catheter had slipped down, but rather that his heart, diaphragm, lungs, etc, were raised up because of his sitting position. (The concern is that the catheter could enter his heart and cause arrhythmia.) They want to let things settle for a day, let his chest expand a few times through deep breathing, and monitor his heart for any aggravation. If everything looks good today then we will forgo the "adjustment" surgery and begin the ATG treatment tomorrow.

Hospital Info

Some people have been asking for this:

Maxwell Mazgelis
Mass General Hospital
55 Fruit Street
Boston, MA 02114

He is on the 17th floor of the Ellison building.
Room Number -617-724-5762

Getting started, sort of...

It was a long day. Max was scheduled for surgery at 3:30PM but they were backed up, so he didn't get in until 5. They put in a portacath which they will use to give the chemo drugs, blood products, and do labs. The surgery was relatively minor, but took about 1.5 hours. It took Max a while to come out of the anesthesia, and he was happy to see us, well really Josh. All he wanted was Daddy. Apparently he clung to a confused but very tall med student with glasses. Daddy substitute. :) We got settled in his room around 8:30. However, we got some bad news around 9. The line they put in slipped and so he will have to go back into surgery tomorrow to move the line. They do not have to completely repeat the procedure, but this does mean more anesthesia. It also means a delay in starting treatment. They will hopefully start tomorrow afternoon. They want to start him on a 5 day course of ATG as soon as possible.

We got a better feel for what we are facing today. 5 days of ATG and steroids. Then, they will start him on the cyclosporene. If he does really well, he will be home in a week, but there is a high chance of infection as well as just basically getting sick from the drugs, so he will probable be in longer. After he comes home, he will be on the drugs for another 6 months. He will need transfusions pretty regularly and will be at high risk for infection. Hopefully they will start seeing an improvement in two to three months. After they stop the drugs, it will take about another 6 months for his body to recover. So we are in for a long haul. However, the pedi hem/onc said that Max will be able to play with his friends. No preschool for him for at least a year, though.

I am very tired and just rambling now. Josh is with him but needs to go to work tomorrow. My parents are here. We appreciate all the help, gifts, cards, and well wishes he has received. Thank you all.

We Have a Plan

We are home from the hospital until Thursday. The transfusions gave Max a great bump and his platelets are up to 120,000 and his hematocrit is up to 26. Even his white count and ANC was up a bit. He was, as usual, a trooper and charmed the staff. Wait until you see the video of Max playing the electric keyboard that the music therapist left him, wearing his Elton John sunglasses (thanks Uncle Paul and Uncle Roland) and rocking away. His nurse thought this was so funny that she brought the entire nursing staff in to see him. He only cried when it was time to go home. He didn't want to leave because he was having too much fun. I hope he keeps this possitive attitude over the next several months.

We got the Fanconia's Anemia test results back and it was negative. So, it's officially idiopathic aplastic anemia. As we mentioned before, because none of us matched, they are going to do immunosuppressive drug therapy. They are going to be delivering the first set of drugs via IV, and are going to start by surgically planting a catheter in his chest (a portocath). Because they couldn't get us a surgical spot tomorrow, they sent us home and we go in on Thursday to get that installed. Then, after surgery, they will send him up to Mass General Hospital for Children. He will be in a private room because he can not be exposed to other kids. They will give him ATG and prednisone for 5-7 days, and then, depending on how he tolerates it, he will come home. They will keep him on the steriods for a while and he will start on cyclosporene. The ATG may make him quite sick, or he may not have any trouble at all. It often causes something called "serum sickness" which has flulike symptoms. Because it seems that his body has pretty much stopped making platelets and red cells, they expect to need to transfuse very often, probably every week or two for red cells and every 3-5 days for platelets. They will do this through the portocath, too. They should be able to use it for labs as well, so this will really cut down on the number of needle sticks Max will need going forward. If the therapy works, they expect to see an improvement in 8-12 weeks.

We have family members coming to stay with us for the next week or so. If he needs to stay longer, we will figure it out. This is going to be a long haul, and we appreciate all the help everyone has offerred. The hospital has great facilities for Max, including music and art therapy.

I am scared, but at least we have a plan now. It is a lot better than all this waiting. We just have to get through this and keep him healthy until it works.

Tired of Waiting

We are hoping to hear about the Fanconia's test today. If it is negative, then they are planning on keeping Max in the hospital and starting the treatment right away. We are all hoping this will be what happens. At this point, his body needs some help. He was upbeat despite the IV when I went home last night (Josh stayed with him), though he wanted nothing to do with the oral medications. Go figure. He is a funny boy. JOsh's sister is staying with Lauren today so I can be at the hospital without chasing her all over the place. I will update again this evening (or someone will).

A word on emotions

It's hard to verbalize the feelings I've been experiencing as we go through this ordeal. Scared. Saddened. Confused. Frustrated. Angry. Sympathetic. Exhausted. I keep hoping that everything is going to turn around and it will all be over. I have zero indicators telling me that may happen. It's good to know that there are treatment options and we are ever hopeful that we will get through this with the smallest impact possible. Twenty years ago there were no treatment options, but today is a very different world then it was back then. It's good to know that we are finally at the treatment stage and we're hoping that everything goes smoothly.

CBC 10/16/06 - More Transfusions

Max's platelet count has fallen to 7000 and his hematocrit is at 19, so we are heading back to the hospital for transfusions of both. His ANC is down to 200. It is pretty obvious that his body isn't making many cells at this point. They have a room for him overnight. I just want that test to get back so they can start the treatment.

CBC 10/10/06

White Cells: 2.7
ANC: 300
Leucoytes: 75%
Hemoglobin: 7.3
Hematocrit: 20.8
Platelets: 20,000

Because his red count is dropping as quickly as it is, we go back for another CBC on Monday morning and they expect to need to do another transfusion early next week.

Biopsy Results and the Last Two Days

They performed a bilateral (on both sides) biopsy on Max yesterday. We got the results today and both showed about 15-20% cellularity, which is basically what they saw two months ago. This means he does have aplastic anemia. They ran two other tests, one for PNH which was negative and one for Fanconia's Anemia. The Fanconia's test takes quite a while to run and it will be a week or two before they get the results. If it comes back negative, they will start treatment for aplastic anemia immediately. As none of us were perfect matching, they are not going to try a bone marrow transplant at this time. Instead, they will be doing immunosuppressive therapy. This will start with a 1-3 week hospitalization where Max will be given ATG and a steriod. Then, he will take cyclosporine for 6 months. Hopefully, this will destroy any cells that may be destroying his bone marrow, and get the bone marrow working again. During this period, we will have to do our best to keep him from developing life threatening infections or bleeding.

We have had a long couple of days. Yesterday was really awful. Traffic into Boston was horrible and it took us close to 2 1/2 hours to get to MGH. Because we were so late, they moved Max's appointment back from 10:30 to 12:30. Max fought the anethesia so she had to give him a large dose, which took him forever to shake off. We left around 5 with Max conscious, but still pretty woozy. In fact, he threw up as we were walking out the door. He slept the whole drive home. When we arrived home, he was hungry, so we put him in his booster chair and went to get him food. He fell asleep and hit his head on the kitchen table. As his platelet count was only 12,000, he is at a high risk for a brain bleed, so we had to go back to the hospital, where they did a CT and gave him a platelet transfusion. The ER was crazy, and it was after 5AM before Max got admitted to the pediactric ward. Josh stayed with him. I went home around 4AM. Our friend Rosa has been visiting and stayed with Lauren. She has been a Godsend these couple of days.

Because the ER was so busy, two residents put in Max's IV. The nurses there do a fabulous job with IVs, but, probably because they don't do many, the resident had trouble. He missed the first try (he was on Max's right arm because his left had been stuck twice earlier that day), then managed to get it in the second try, but was not comfortable with the way it was flushing. However, after much fiddling, flushing, drawing, etc, they decided it seemed to be working okay, and started the platelets. I wanted to stay around until they finished the transfusion, but by then it was almost 4, and I really needed to go home. Max and Josh fell asleep.

When the checked the IV this morning, they discovered much of the platelets had not gone into the vein, so Max's arm was quite swollen and sore. Much of the swelling has gone down, but he is still pretty uncomfortable. His body did absorb a lot of them, though, and should absorb the rest eventually. His platelet count is up to 51,000. They gave him a shot of vitamin K and sent us home around 3. He did so well these last two days. He is really amazing. He had 4 IV's put in (the put a new one in when they discovered the problems this morning), plus the miss, and one shot, as well as the CT, which definitely scared him. He is stiff and sore. But, he has remained pretty upbeat. Hopefully a good night's sleep will help a ton. We could all use that.

On a good note, his Absolute Neutrophil Count is over 500 (barely) so we can actually do some more normal activities for the next few days. I hope to do some things while we can. Our next blood test is Wednesday.

Third biopsy tomorrow

We head in to MGH again tomorrow (Thursday, 10/05) for Max's third bone marrow biopsy. The first test gave us a baseline, and the second test showed an increase in cellular activity. (Activity was up from 20% to 50% between those two tests.) Subsequent CBC's show his number declining though, contrary to what was expected based on the second biopsy. So back we go for another sample and another set of numbers. The sample they take tomorrow needs to soak for 24hrs before processing, so we won't have the results until Friday at the earliest. There is a lot of waiting involved in this process, and nothing happens quickly enough.

How is Max?

We get this question a lot. Max is actually doing really well. Although he's sick inside he still acts just like a normal three-year-old. He loves to play pretend and run around and watch movies the same as he always has. He's also been very accepting of all the testing he's had to go through lately. Occasionally his toys need to have blood tests too and they always feel better after "visiting the hospital."

Max is bruising easily now and is prone to easy and prolonged bleeding. We need to keep an eye out for him so he doesn't hurt himself. (Low platelet count means that his blood does not have the natural clotting abilities most of us possess.) The possibility of internal bleeding does exist, which could potentially go unnoticed for dangerous amounts of time.

He also occasionally needs to "take a little rest" if he gets winded, but he is right back at it a minute later. I originally thought these "rests" were part of the playing since the breaks are so short-lived. (Low red blood cell count means he isn't moving as much oxygen as he could be.) I suspect he does feel a little blah as a result of the low red count, perhaps a bit like having the flu all the time.

I think one of the more obvious affects on Max has been at the social level. We've had to pull him out of preschool, he can't go to playgroup, and his friends can't come to visit. (Low white blood cell count means he has a compromised immune system. He would not be able to fight off any infections if he got exposed.) He really misses his friends and the fun things he used to do in class and in playgroup. We do our best to keep him entertained but our options are limited. He can't come shopping with us either, so just getting chores done can be complicated sometimes.

So how is Max? He's a brave little man and he's doing just great!

-Josh