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

CBC 9/28/06

White Cells: 3.0
ANC: 400
Platelets: 10,000
Hemocrit: 26.8 (post transfusion of red blood cells)

The History

On June 20th, I noticed some strange bruising on the front of Max's neck. It looked like broken blood vessels. At first we just thought he wasn't getting clean enough, so we made sure to scrub his neck well that night, and it went away. A week or two later, he took a ride in a friend's stroller. The next day, he had similar bruising on the back of his knees. There was a lot more bruising this time, and I was really concerned, but they cleared up really easily again. However, we started noticing that every time he scratched, he bruised. When I took him in for his 3rd birthday appointment, I pointed this out to his doctor and she ordered a CBC (Complete Blood Count). We headed out to Davis Farmlands to play with goats and other animals, run through the water park, etc. I got a call from the pediatrician. His platelet count was very low, which is why he was bruising. His white count was way down, too. We needed to drop everything and go to Mass General Hospital Pediatric Oncology. I have never been so scared in my life.

At MGH, they did a bunch of tests and a bone marrow biopsy over the next two days. They prepped us for a diagnosis of leukemia. We cried a lot. Then, amazingly enough, they came in and said he didn't have leukemia. We could go home. His white count was very low, especially his Absolute Neutrophil Count (ANC) and he was at high risk for bacterial infection, and we were safer at home. We were in a happy daze when we left. We had to keep him away from other children and anyone who was sick, make sure he didn't do anything to cause bleeding, and wait until his bone marrow recovered.

Since then, we have done weekly or biweekly blood tests. Max has done amazingly well with them. His ANC count has pretty much stayed at 400 (anything under 500 is considered dangerous), with one bright moment at 720, before dropping to 300 and then back to 400. His platelet had stayed up over 20,000 for most of the time until 3 weeks ago, when they plunged suddenly. They are at 10,000 now, and he is at high risk for spontaneous bleeding. They did another bone marrow biopsy in early September. THe first one showed 20% cellularity, and the second one, 50%, and we thought he was recovering. However, the recent test results are so poor that they are pretty sure his bone marrow is failing and they just got a good snapshot the last time. He is scheduled for a repeat biopsy on Oct 5th. They are expecting to see aplastic anemia. They have typed Josh, me, and Lauren to see if any of us match his bone marrow. If we do, they will do a transplant. If not, they will probably check to see if they can find another match, but we are not sure about this yet. THere may be a time constraint. There is a series of drugs that sometimes kickstarts the bone marrow as well and is supposed to do very well in children. So, we wait and we hope and we try to keep him healthy.

New Blog

Everytime we have news about Max's condition, I end up making a lot of phone calls, sending emails, IMing, etc, and telling people the same information over and over. We miss people. It is sometimes painful to have to repeat. It is definitely emotionally draining. So, I am starting a blog where I can post updates.