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.