Ready for Anything

Max wakes up most mornings pretty ready to play. This means that so often, as I am sitting here trying hard to drink my coffee and wake up and face the day, he is ready to play something like chainsawing bicyclist ready for a swim.

Sibling Love

This one is for "the teacher at Farrington." :)

One of the bright spot out of all of this is how close Lauren and Max have become. They really enjoy each others' company. Often, they start there day with hugs. Max likes to read to her and tell her about things. A couple of days ago, while Lauren was napping, Max wanted to wake her because he missed her. She adores him, too. They do fight and there are times when Max definitely wants her to go elsewhere (we are working on teaching him to go into his room and close the door rather than flatten her), but more often than not, they get along.

Whether dancing, painting, helping Lauren enjoy a boat ride at the amusement park, or teaching her how to drive a remote control car, they really enjoy each others' company.

He's Come So Far

A year ago, we had hoped to attend the Common Ground Fair in Maine. Instead, Max received his first blood transfusion. I was determined to attend this year, so we drove up on Friday morning. It was a long drive but worth every minute. The kids had a great time. Max especially enjoyed it. We spent most of the day in the kids' areas. The adults didn't get to do much of what we had planned to do, but sometimes you just need to let the kids do their thing. Here are some picture of a healthy looking boy

Treasure!

So often, I find myself sad that Max has not had a chance to do so many of the things that his friends are doing, like preschool and music class and swim class and dance and soccer.... the list could go on and on. I read the local community center activities lists and think about how much I wish he could go to things. Part of it is selfish, I will admit. I wouldn't mind the breaks that some of the activities offer. But also, I sometimes really feel like he is missing out on things. Like maybe if he doesn't take a class now, he will be behind later. And then we have things like yesterday, when he and Josh found an old hatbox in the attic. Josh brought it down and cleaned it and the hats up (yes Mom, we cleaned them really well before letting anyone play with them) and let the kids play with the hats that were inside. THere were two. One reminded Josh of Indiana Jones. The other was rounder with a flower. Max took one and gave the other to Lauren and they played games involving their hats. It was so much fun to watch. They are so inventive and imaginative. I love watching them learn, too. I worry that I am not doing a good enough job teaching them, but they continue to amaze me, especially Max. So maybe it isn't all bad that we are spending all this time together. This is a great age and so much fun.

Much Better Numbers - CBC - 09/06/2007

Max had a visit from the home healthcare nurse today. She did a blood draw. Believe it or not, Max was thrilled. He missed her. He was actually asking to get a blood test yesterday. Strange boy. :)

His numbers were much improved. His doctor was very happy to see them, and even cancelled next week's blood draw. He said we don't need to check again until the end of the month. He definitely wants to wait on school until his system is stronger, though. That is fine with me, as seeing his numbers plunge like that really shook me up. I went to his preschool orientation last night (is starts next week) and it was kind of sad knowing that his start date is still up in the air, and he really wants to go now that all of his friends have started school, but it is for the best. Hopefully he will have no trouble adjusting when he does get there.

We talked about removing the port again. The goal is next month assuming his numbers hold. I know that this is the third month that we have heard this, but seeing as the original plan was to remove it a year after it was put in, and that was in mid October, I think they mean it at this point.

Here are the numbers:

WBC: 4.2
HGB: 11.9
HCT: 34.4
ANC: 1344

CBC - 08/29/2007

This can be so draining at times. We knew that there was a chance that Max's counts would be down because he had been sick. Plus, he has had a lot of petikia, so I knew his platelets have been fluxuating. But, it is still hard seeing the numbers, and his white count was much lower than I expected, though his doctor didn't seem surprised at all, and was actually happy to see how good he looked. His red cells keep doign well, though. They are still in the normal range. He really does look great, with lovely red cheeks and lips. Because his white count was so low (and his ANC), they are going to retest next Thursday. Hopefully there will be a recovery by then. If not, they will think about doing a bone marrow biopsy, but hopefully it will not come to that.

I have always expected Max to wait until Oct to start school, but his doctor had been talking about letting him start in September. However, because of the drop, he wants to wait and see, so it will not be until October at the earliest.

The good news is that his doctor could see no reason to curtail his activities (except for preschool), so despite the ANC, we can still do things.

I have included a goofy picture of Max from the 4H Fair because this is kind of a downer post and so I thought a lighthearted picture was in order. He wanted to have his face painted like a green goldfish with a black eye. Don't ask us. :)

WBC: 2.8

HCT: 34.1

HGB: 12.2

PLT: 86

ANC: 510

Amazing Boy

For a child with a suppressed immune system, something must be working in there, because Max had a great day. I kept expecting for the fever to come back, for him to slow down, something, but he just played and ran around most of the day, which was really amazing seeing as it was almost 100 degrees out (hotter with the humidity factored in). He had some weepy moments, but other than that, seemed like himself. What a nice surprise that was.

Max's Health - Update

Max slept for almost 12 hours last night and woke up feeling much better. I am pretty sure he still has a low fever, but I didn't bother to check it. He has been running around and has eaten everything he can get his hands on (which really isn't unusual for our kids who tend to eat for about the first three hours of the day every day, but having skipped dinner last night, he woke up very hungry). I would guess that his fever will probably go up by the end of the day again, but maybe we will get lucky.

Max is Sick. :(

Wednesday night, I came down with a cold with fever. It is a low grade fever, but I have been worried about Max getting it. This morning, he seemed off, having a complete meltdown because his banana broke, among other things. We had a nice day anyway, going to the 4H fair for several hours (me on Tylenol) but after Max took a short nap, he woke up very clingy and didn't eat his dinner. I checked and sure enough, he was running a temperature of 100.0F. If it goes up much higher (101.5) we will have to call the doctor and it will probably mean a hospital stay. I am really hoping he will wake up feeling better. He was really looking forward to going to the fair again tomorrow.

Simple Joys

Sometimes, I need to learn from Max. He and Lauren take such joy from little things. He can be very demanding at times, but more often than not, it doesn't take much to make him happy. Last week, we had storms off and on through out the week. Max just wanted to run and play in the rain. I remember a day when I was in college, walking home from a festival in a terrible thunderstorm. We were running around, getting soaking wet, and just enjoying it. These days, when Max wanted to do the same type of thing, I wouldn't let him because I didn't think it was safe. But, I did let him stand on the porch and dance as the rain poured down on him. I, on the other hand, sat on the bench and stayed dry. And smiled the whole time.

Snorkling, anyone?

Max has been preparing for his Make a Wish trip to the Carribean. He can't wait to go play in the big pool again, and has been loving every moment that we have spent at the beach this summer. Josh got him a new mask (Cisco ate the old one) and snorkel and he has been practicing in the little pool in the backyard. The first day he had it, he wanted to get in the bathtub and try it. He is too funny sometimes.

A Wonderful Week

We just returned from a week at "The Lake." It was so nice. We spent so much time there last year, as there were so few places we could go and things we could do. It was nice to be there this year just because we wanted to be there. The kids had a great time. Max loves it up there. We fished and swam and boated and played on the rocks. He got to go flying with Grampa Rich. It is so nice to watch him play on the rocks and not worry about him falling. Of course, at this time last year, I hadn't really learned to fear the falling yet. But, it is so nice to watch him play and not worry too much. His color is great, too. I love seeing the red cheeks and lips. He has had a cough for a couple of weeks, which has worried us, but it seems to be getting better. He has no fever or other signs of illness, so we are just watching it.

I can't believe how tall he has gotten. He is muscular, too. He can run and run again. What a difference from a few month ago when he got winded fairly easily. I had never seen a child out of shape before. I just always imagined that they would run and run and never really get tired. He can do that again. We pretty much have to drag him away from activities. We had to drag him shivering out of the lake a couple of times. He is just like his Uncle Greg. :)

Speaking of Uncle Greg, we got to see him on this trip. The visit was short, but Max loved it. He adores Uncle Greg. I wish we lived closer to him.

I will post a few pictures soon.

No planned blood draws until the end of the month, unless I get worried about something. I need to learn to trust his health and not rely on CBCs to know how he is doing.

More Happy Days (A Visit to Papa's)

We went up to visit Papa and Grandma Lyd. Max woke at 5:30 the morning we were to leave, got dressed and got in the car. He was obviously excited to visit. He had a great time. The last time we visited them was in November, and Max's ANC was so low that we were really not able to do anything (though we had started to see signs that he was getting better). We went to Shaw's lobster shack, where Max got to pretend to be a clam (and I couldn't resist throwing in a picture of Grandma Lobster), walked along tidal pools, and went to the beach. It was such a great trip. In November, Max ended up in tears because he wanted to look out of one of those giant binocular things and I wouldn't let him because I was afraid he would pick up germs. This time, he got to run around on the beach with other kids and I didn't worry. What a difference.

Happy Days

I promised some pictures. Here they are.

We gave Max his presents from us on his actual birthday. He got a guitar that Josh found at a garage sale. It is a pretty nice one, for a child's guitar. It came with a great case that had another child's name on it, but a friend of ours made a patch for it, so now it says Max. He has been playing it a lot. We took it to Papa's and he tuned it for him.

CBC - 07/26/2007

The hospital visit went very well today. Afternoon visits mean rush hour traffic on the way home, though, so I am posting this late.

Dr. Ebb was very happy with the way Max looks. He is still growing like a weed and is now over 103.5 cm tall. His counts were down a bit from last month, though, so he pushed the decision to remove the port off another month.

I hadn't written about this because I didn't want to worry people, but last week, after he came out of his birthday with a bruise on the cheek (from a very hard collision with his cousin), and some broken blood vessels in his eye (from me poking him in the eye with a fingernail :( ), I got worried and had the nurse do a blood draw. The platelets were down to 93, but that was high enough so that I wasn't worried about them. However, his white count had dropped to 3.5 and his ANC was only 544. So, as compared to last week, his counts were actually up. I was pretty relieved to see that.

Here they are.

WBC: 4.2
HCT: 33.6
HGB: 12.5
PLT: 97
ANC: 1220

I asked the doctor and he said it is normal for numbers to fluxuate. So I am not too worried. I don't mind a dip as long as it goes back up, though I have to say the 544 worried me. His ANC hasn't been below 700 since December. I am really glad that is is back up over 1000.

We go back in a month. Hopefully they will decide to remove the port then. At this rate, it will come out in October as originally planned. It isn't a big deal, but symbolically it will be.

An Anniversary

I was going to post about this last week, but I think it might have come out to be more negative than it actually should have been, so I waited.

Friday was the one year anniversary of the day when we first found out Max was sick, even though it was two more months before he was finally diagnosed. What a long year it has been. We have learned that we have strength that we didn't think imaginable. Max has been so amazing through all of this. He has stayed such a happy and positive child. We are so lucky that Lauren is as young as she is, too, because she has been so accepting of it all. She has been passed around from person to person, sometimes dropped off at people's homes when she barely knew them. We have made some great friends. We have had many sleepless nights, and I am still not sure when the fear and worry go away. I still can not bathe Max without looking at every single bruise on him, and constantly look for petechia. But, it is getting better. We went to the park on Tuesday and Max climbed and ran and I found that I wasn't spending the entire time worrying about him falling.

A person close to me told me that she doesn't read Max's blog because she thinks blogs are "self serving." I am amazed at how much that upset me. I suppose she is right, though. This blog has really helped me get through this. I thank all of you who have left supporting comments either on the blog or directly to me. You all have helped us get through the last year.

Max has a CBC scheduled this afternoon. I will post when I get home. I also have some new pictures to post, but the computer is being difficult and I can't seem to get to them right now. I will try to post those in the next couple of days. :)

Birthday Party

Our last really happy memory last year, before all the worry began, was Max's third birthday party. It was a small family party, and everyone had a nice time. Four days later, he was in the hospital. Well, it has been a year. Today, we celebrated Max's 4th birthday, though he won't be four until Wednesday. We had family over, and a couple of friends. It was casual, but everyone had a lot of fun. All Max asked for was a Spiderman birthday candle, which I ended up ordering on the internet for a ridiculous amount of money (well, the candle wasn't bad, but the shipping was), but it was worth it. He was thrilled. It was hot, so the kids played in the kiddie pool and sprinkler, while the adults sat in the shade. I can't think of a nicer way to spend a party. Max got a basketball hoop which he is thrilled about, a Buzz Lightyear backpack for taking to the beach (must go to the beach sometime). He got some great games, too. I don't think he could have been happier.




Here are some picts. Unfortunately, for some reason, we didn't

manage to get any great pictures of Max, but hopefully you will see how much fun he had.

CBC - 07/02/2007

Max's results were good again today. His red count is at a normal level, his white count was way up, and his ANC was very good. His platelets were up a small amount from two weeks ago. His reticulocyte count hadn't come in by the time we were ready to go, but given the rise in his red count, we are sure it was good.

Max's doctor felt that his numbers have been steady enough to eliminate the middle of the month blood draw, so we are down to once a month visits. If his numbers are good next month, they will make plans to remove the port. He will get oral antibiotics after that, instead of IV antibiotics. This will make our visits much faster and eliminate Max's biggest complaint, the removal of the awful tape stuff that they put over the needle when he is accessed.

The music therapist was there today. Max loved his time with her. I got a massage. All in all, it was a good visit. :)

Here are the numbers.

WBC: 5.8
HCT: 34.6
HGB: 13.0
PLT: 109
ANC: 2150

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.