Huge Milestone - CBC 07/28/2010

Today was Max's 6 month appointment. We went into MGH at 10 AM, saw Dr. Ebb, got his blood drawn and then Dr. Ebb said that even without looking at his counts, he seemed to be doing great and unless we got some surprises when the CBC results came in, we didn't have to come back for a full year. I have to say that I really thought this day would never come. It is such a huge milestone. I remember about 2.5 years ago, when he was still going biweekly asking Dr. Ebb if we were going to be going several times a year for the rest of his life and him saying that he had teens who had to be dragged in once a year and that he was optimistic that it would be like that for us. That seemed like such a far away dream though. And now here we are. I can barely believe it, and the thought brings tears of happiness to me. It also brought Max to tears for a different reason, which made me chuckle. He was genuinely sad to hear that he wouldn't be going back to the hem/onc clinic for another year. He said he really likes Dr. Ebb and will miss him and asked if we could go for a visit sometime. I suspect I can work something out.

After the appointment, we took the T to the Haymarket stop and walked up to Hanover street for a couple of slices of pizza. We had James with us and both boys really enjoyed their pizza. We then directed a tourist family away from Mike's Pastry and towards Maria's and Modern Pastry (lol) and headed to Maria's, picked up pastries and gelato, and then walked over to the Rose Kennedy Greenway to eat and play in the fountain. Then, Max talked me into taking them to the aquarium, which I love but is really expensive. We really enjoyed it and even got to see the seal show, which I don't think I have seen since I was a child. A quick T ride back and we retrieved the car from the lot and headed home in rush hour traffic. Both boys fell asleep about 5 minutes into the ride. I, wish I could have, too, as I was beat, but in a good way. Wearing a 22 pound child for over 4 hours makes for a very good workout.

I missed Dr. Ebbs call (I think he called when we were down in the Jellyfish area and I didn't have service) but his counts were great (I called back and one of the nurses gave them to me). They took longer than normal because he ran a bunch of liver etc function tests as well as a retic count, which he hadn't run in at least a year. Everything came back normal. Here are the results.

WBC: 6.5
PLT: 203
HCT: 39.5
HGB: 13.1 (I think. I was writing in crayon on a dry cleaner tab while in stop and go traffic merging onto rt. 93 and it is a bit hard to read that one.
ANC: 3580

I still feel like it is a dream.

Oh, I forgot something. Dr. Ebb told me that they have a new patient at MGH who was about to start treatment for SAA. I told him that if his parents wanted to talk to me, I would be happy to talk to them. I remember how terrified I was, and how much better it made me feel to talk to a mother whose son was doing really well after treatment. It is such a rare disease that it is hard to find anyone who has had to go through this and so often, the news if you Google is just not good. He said that there was a language barrier but that he would tell them anyway. Either way, I hope the boy does as well as Max has done.

May the Force Be With You

Max turned 7 today. Where has the time gone. He is growing so fast. His birthday is always a time when I reflect about how lucky we are to have him. Two days from now will be the 4th anniversary of finding out that he was sick. In so many ways at this point, it seems like a long ago bad dream. He has been doing so amazingly well. Two more weeks and we go for his 6 month appointment. I am trying not to think about it so that I go into the stressed out and unpleasant to be around mode. Easier said than done.
Max wanted a Star Wars birthday party. He actually wanted a costume party, but I was worried that it would be too hot for people in costume so we made it costume optional and no one, including Max, wore costumes. It was hot, around 90, though cooler than yesterday. Max wanted a Slave 1 (Janga and Boba Fetts' ship) cake and pinata, but to me, Boba Fett is the guy who tried to kill my hero in hotness Han Solo, plus there was nothing on the internet showing me how to make a Slave 1 cake, so I went for R2D2 instead as Max still really likes R2D2. (He painted a paper mache pinata and called that Slave 1, so he was happy). I got some crazy idea that I would make a 3D R2D2. I had first planned to surprise Max but decided to include him on it, and am very glad that I did. First of all, it would have been really difficult to hide it from him, and secondly, he helped decorate it and really had a good time doing it. Even I had a good time. Somtimes, it is hard for me to let go of my idea of doing things "right" and just let the kids things the way they want to do them. We used fondant, which I had never used before, and the kids really enjoyed using it. So did I, for that matter. I still think it is tastless but I get why people use it. It was really fun to work with. Max LOVED the way the cake turned out and I was pretty pleased, too. It was far from perfect, but that is okay. And it was yummy. :) Just ask James, who we found sneaking cake and frosting while we were decorating at another table.

For the rest of the party, we did a Jedi Training Obstacle course, but mostly they just ran around the yard. Max had a blast and it seemed like everyone else enjoyed it, too. I don't do this whole super planned out party thing well at all but I tried. It was a really nice day. Sorry for picture overload.

I Just Had To Share

I posted this on the family blog: http://joshmaz.blogspot.com/2010/07/sibling-rivalry.html but really wanted to share it on here, too, as it shows what an amazing heart Max has.

And for those who are wondering, he was supposed to have his 6 month checkup this week but we moved it out two weeks because I work every day this week and he is going to "camp" next week. I am anticipating good news. Hopefully I will not be surprised by anything.

The Club

Two days ago, it happened again. Another family that I have some connection with (albeit not closely. I am familiar with the mother because she posts on Thebabywearer) found out that their child might have cancer. A mutual friend of ours asked me if I had any suggestions for what to do for the child and the family. I sent a list to her, mostly suggesting craft things for the child - something that will be fun to do when stuck in a room that he can't leave for days on end and gift cards for food and parking at the hospital. It is amazing how much you can end up spending just on parking (my friend Sally suggested gas cards, too, which was a great suggestion. We spent a ton on gas, but I guess because we were going to the same gas stations that we always went to, it wasn't so obvious as the 16 dollars a day we were spending on parking.). But as I was writing it up, I was amazed at how once again, I could feel the panic in my heart like it was my child. I could hear Dr. Sanders on the phone telling me the bad news as if it was yesterday. My breathing changed, my heart tightened. How I feel for the parents. They will never be the same, even if they are as lucky as we were and everything goes well and three years later they have a healthy child who barely remembers the experience. Before Max got sick, I would hear stories of sick children and they would make me sad but it didn't go past that. I couldn't relate to it. I hoped that the child would get better, but I didn't understand what it all meant for the family. It changes everything. Sally and I were chatting today about the worry. When does it go away? Does it go away? It has been three years of remission for both of us now, and yet we both dread the checkups. We talked about the fog that you are in after the diagnoses and through treatment. She described it as being in the twilight zone. I feel like I sleepwalked through a large part of a year. It was at least another year before I started feeling normal again. I still feel like I lost a part of me during it all and I don't think I will ever get that part back.

The bright part I suppose is that our perspective is different. The things that seemed big before often don't feel big anymore. Even Josh's job loss didn't seem as big a deal as it probably should have seemed. Maybe we worry the same amount as other people, but just worry in bigger chunks?

Thinking about it makes me tired.

I hope that little boy does well. I hope they find that it isn't cancer, and if it is cancer, I hope that he responds as well to treatment as Max did. I know how lucky we were. I count that blessing every day. I hope they are as lucky. May the fog lift for them quickly. Their son has the most amazing smile. May they see it often and may it bring them light. I know seeing Max smile and laugh made it easier for us.

Mostly, I wish nice families and children in general never had to face life threatening illnesses.

Where the Wild Things Are

Yesterday was a rainy day with nothing planned. Max decided to make hats. I am not sure what prompted this, but he started off making (with my help) a "knight's hat" and then moved on to a crown. After it was finished, he ran around the house with a stick that looked like a sword in his belt loop, wearing his hat. I look at him and realized how much he looked like Max from Where the Wild Things Are so I had Josh take some pictures. After the pictures, we went to the grocery store. The kids wore their hats (Lauren had a purple and white hat that she called a "square pirate hat" which was neither square nor resembled anything I have ever seen a pirate wear but she was happy). We got a lot of looks and several comments. The comments were all positive, especially from the many children at the grocery store that morning). I am not so sure that the looks were all positive, but the kids were happy and that is all that matters. What good is it being 6 if you can't wear a homemade paper crown to the grocery store.

Long Overdue

I have been a baaaaaadddddd blogger. I haven't posted in ages. I am not really sure why. Sometimes, it is just tiring to think about. Max's illness at times feels like a lifetime ago. I have long periods where it just feels like a bad dream that is starting to fade from memory. It is nice not to think about it all the time. Plus, as much as anything, not much has been going on. Max is doing great, for the most part. He loves school so much that he was not happy to have a long weekend over MLK weekend. He seems to be thriving there, though we still get the same old could do a bit better at focussing comments. He is the best reader in his class and is reading like crazy around the house, which I think is so cool. We went to dinner a few weeks ago when visiting my father and I was going to do what I typically do, which is look over the children's menu, decide what if anything was on there that I was willing to feed my children (sometimes I will have them order off the regular menu and split or get appetizer size things or split meals with them) and as I started to read the menu, Max said "I want a hot dog and chips." I stared at him for a second, and then said "oh yes, you can read the menu, can't you." So much for that trick. :) Prefirst has been very good for him, I think. I don't think he is overly challenged by the curriculum, but he doesn't seem bored, which is what I feared. He flies through his homework most nights, often finishing the entire week's packet in a short sitting the first evening. I have compared this to the workload that our neighbor's first grader (who went to K with him) and it is much lighter, which is nice for both of us. However, sometimes he rolls his eyes about it and mutters that it is just like kindergarten. They did a great job at his school last year. He learned to ski this winter and just finished 6 weeks of lessons. He did struggle a bit with it, and his instructor said it was because he lacked lower body strength. I was pretty surprised by this, to be honest, and am going to try to do more activities that involve building up the strength in his legs. I suspect there will be a lot of bike riding once the weather warms and the days lengthen, especially seeing as James will be old enough to ride in the trailer this summer so we can go out as a family (I haven't been on a bike ride since I got pregnant with Max and am really looking forward to it). His swimming has greatly improved and he can swim independantly now and will even go under water willingly, though only with goggles on. He is going to take one last swim lesson series this spring and then I think we will be done with swimming with him. He likes to play around in the water, but doesn't love it like his sister, so we will see if there is another activity he would rather participate in. We got where we wanted to get, which is he can swim well enough to save himself if he falls in. He is also doing Tae Kwan Do at the school where I work. The instructor offerred free lessons to teachers' children and I jumped on it. He really enjoys it and even got to break a board. I will see if I can get Josh to post some pictures of that as it was pretty cool, though unfortunately I missed it as I was teaching. This may sound like he has a ton going on, but we try hard not to overschedule the children. We took the winter off from swimming so that he could ski. I think two activities is plenty. Last week, one of my students was saying that she and another student had the same number of after school activities, 6. These were second graders. I just can't imagine. That sounds like so much for a child. I know that doesn't make me a normal American mother in this day and age, though. Hopefully he will not regret that we didn't have him in more stuff later in life.

As far as Max's health goes, he has been mostly healthy, but seems to be struggling with ear issues this winter as he did last winter. It is actually affecting his hearing and he saw an audiologist on Wednesday. She tested his hearing and he had hearing loss in both ears (he had failed in one ear at the pediatrician's office) but said he had some fluid in his ears and that another test showed his hearing was fine past the fluid point so she was not concerned. I hope the ear infections stop. I have no experience with them at all as I have never had any problem with mine and none of the children had them until Max started having trouble last winter. We will play it by ear (no pun intended).

I guess that is about it. I will try to add pictures later. He has grown so much. He doesn't at all resemble a little boy anymore, though sometimes he still just wants to be snuggled with and held. He seems to big compared to Lauren and James that it is easy to forget that he is just a boy sometimes. I miss him so much when he is gone all day, though. And I am grateful that he still likes to sit in a chair with me or snuggle at bedtime. I know that will pass far too soon and I try hard to treasure it.

Oh, and the long ago promised CBC stats from January:

WBC: 4.9
HCT: 35.9
HGB: 12.8
PLT: 196
ANC: 255

Some Things Don't Change

Wow, 6 months between appointments went really quickly. Max's check up is tomorrow. Where has the time gone. I have been really bad at posting. I suppose part of it is that everything has mostly seemed normal. Max is doing well. He has been healthy and settled into school and his illness so often feels so very far away. Sometimes I can't shake it, though. Today is one of those days. I have been on edge since Sunday, snapping at everyone, feeling tense, pacing, not being able to settle. I couldn't figure out why. You would think that with the kids back at school, things would be less stressful. Well, it struck me this morning. The appointment. Tomorrow. The closer it gets, the more wound I feel. Josh doesn't get like this. I am jealous of his ability to be so sure that everything will be just fine all the time. I keep hoping that I will be able to get like that again someday.

I will post tomorrow when I get home. I am sure it will be fine. There is nothing to indicate that it won't. He has another ear infection, I suspect, but other than that, he is healthy, his color and energy are good, no bruising etc.

I found myself snuggling with him last night at bedtime, remembering just how lucky we are that he is in our lives. Then I snuggled with Lauren and finally James. I am so thankful for all of them.

Happy New Year everyone.