Annual Update 2105 - All Good

He doesn't really fit under here anymore.

I know, it's been a year and I haven't blogged.  Once again, things are good so there hasn't really been anything to say.

We did our traditional thing this year, headed into Boston for a visit to the Aquarium and the North End before heading over to see Dr. Ebb.  The weather was perfect and we had a wonderful time. This is the last time we will be able to buy his entrance ticket as a child and the last time he will ride the T for free.  I guess 12 is adulthood when it comes to ticket purchases.  I took another picture at the seal.  Wow is he getting big.  He passed on pizza and chose a sit down meal at Mama Anna's instead.  He still took off his shoes and ran through the fountains, though.  It was a nice day.

I was a mess this morning.  I can't believe that after all this time, I still get so worried about this appointments.  I guess that will never change.  Once again, our visit left me knowing how incredibly lucky we were and we are.  So many others aren't as lucky.

So big.  And so much hair.  (but in the right places)

The counts:
WBC - 4.0
Hematocrit - 37.3
Platelets - 159
ANC - 1740
Retic count - 0.7

Everything is exactly where it should be.

I told Dr. Ebb and staff how nice it was to see them all and that I hoped not to see them again until next year.  They all agreed.

Annual Update

Yup, it's been a whole year again.  Another year of pretty much nothing interesting happening, which is how we like it.  Max is growing like a weed and will be 11 soon.  In 19 days, it will be the 8th anniversary of hearing those dreaded words "drive immediately to Mass General Pediatric Oncology."  Sometimes it seems like it was all just a bad dream, sometimes it feels like it just happened.  It's amazing how driving into the parking lot still makes me feel so ill.  Luckily, Max isn't bothered by it.  He was genuinely looking forward to the day, and to seeing Dr. Ebb and MGHC pedi hem/onc department.  And we had such a great day, too.  We did our annual trip to the aquarium, his choice, then ate a restaurant in the North End, followed by pastries from Maria's, enjoyed on the Rose Kennedy Greenway.  Max played in the fountains for a bit, and then we headed over.  It was hard to pull him away from the fountains.  I love watching him play so freely.

His appointment went really well.  Everyone was amazed at how tall he was and his long hair was a pretty popular topic of conversation.  Perhaps because in a world where so many have no hair, it really stood out?  He got a visit from Kelyn Rowe for the New England Revolution and Kaitlin Sandeno, an Olympic swimmer.  He didn't know who they were but definitely seemed to appreciate it none the less.
Dr. Ebb was sure that his counts were going to be good and they were.  He told me about a patient of his who came in 35 in the Boston Marathon this year who was diagnosed with Aplastic Anemia in '98.  It turned out that it was the same person whose mother met with me and comforted me with stories of how well the ATG/Cyclosporene treatment had worked for her son.  It was great to hear that he continues to do so well.  I know that he's doing well and probably will always do well, but sometimes that 33% recurrence rate thing gets stuck in my head and it's hard to shake it.  They have a patient undergoing the same treatment now.  I told Dr. Ebb that if his parents ever want to talk, to put us in touch.  Hearing about a success made me feel so much better.  It's so easy to find bad news on the internet and the disease is so rare that there aren't a lot of others to talk to.  I still remember how scared I was and hearing that this other boy had done well make it just a little easier.

The numbers:

WBC - 6.1
Hematocrit - 37.6
Platelets - 176
ANC - 3300.

Everything else was in the normal range as well.  Life is good.

It's That Time Again

It's been a long time since I have posted here.  I skipped posting last year, mostly because I missed Dr. Ebb's call with the counts and I love to have my numbers.

Today, Max and I had a great day.  We went into Boston early and visited the Aquarium.  I let him choose something special and for three years in a row, that's been his choice.  It wasn't too busy and we had a wonderful time.  Then, we walked to the North End, grabbing a hot dog on the way, got pastry and gelato, and took the T to MGH.

It was nice to see the team at MGH.  It's especially nice to see how relaxed Max is there, even if he didn't really talk to people (as he tends to do with new people or people he doesn't see often).  It took a while for Dr. Ebb to get him to open up, but when Dr. Ebb asked about Minecraft, Max was happy to tell him everything about it.  Dr. Ebb said he looked and sounded great and barring any surprises in the blood tests, we could go another year.  We did talk about the leg pain Max often gets at night, and he ran chemistry labs to see if anything was abnormal with his magnesium, calcium, or potassium.

We headed back to the train as soon as the blood draw was done, but Dr. Ebb called when we were almost home.  His counts were great.  His white count was 5.1, with an ANC of over 2K.  His platelets were 171 and his Hematocrit was 37.5, the highest it has ever been since we started testing.  His retic count (baby red cells) was on the low end of normal, but still in the normal range and based on the hematocrit, his body is obviously making red cells so Dr. Ebb was unconcerned.  The chemistry labs were all normal, too, though his potassium level was on the low end of normal so he suggested eating more bananas but that was about it.  Nice and boring results, just like we like.

We will see them again July 1st of next year.

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.