Tuesday, October 31, 2006

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.

Monday, October 30, 2006

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.

Friday, October 27, 2006

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.

Thursday, October 26, 2006

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.

Tuesday, October 24, 2006

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.

Monday, October 23, 2006

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.

Sunday, October 22, 2006

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.

Saturday, October 21, 2006

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!

Friday, October 20, 2006

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

Thursday, October 19, 2006

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.

Tuesday, October 17, 2006

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).

Monday, October 16, 2006

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.

Wednesday, October 11, 2006

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.

Friday, October 06, 2006

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.

Wednesday, October 04, 2006

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