Friday, January 21, 2011

two more clinic visits

Carter and Grandma playing "memory" in the play room. That pole next to him has the 2 chemotherapy drugs that he gets every week. It only takes about 1/2 hour to do both of them.

We went to the clinic on Tuesday and Thursday of this week. Tuesday's visit was with yet another new doctor. I really liked him though and Carter did too. Although, he did call Vienna a "he" and Carter a "she". Dennison told him that he was 0 for 2 and we all had a good laugh. In his defense, Vienna was wearing blue and Carter's hair is pretty long and beautiful. Anyways, it was a pretty short visit. They just checked his blood counts and changed the dressing on his arm. His white blood cell count was 500 with an ANC of 0. Hemoglobin was 7.5 and platelets were 74,000. Low numbers, not low enough where he needed another transfusion though. Then we were stuck in traffic for about 45 minutes on the way home. Carter told us, "I'm having a hard time sitting here." He sounds so grown-up sometimes.

Thursday's visit went really well. I met with Carter's actual doctor, who I've only met once before while Carter was still inpatient. I really like him. We've suspected that Carter is in a higher risk category, although no one has come out a said that to us. Dennison mentioned to one doctor while we were still inpatient that he's seen online that the success rate of childhood leukemia was about 85%. The doctor then told him that in Carter's case, it was probably more like 75%. He didn't give an explanation and we didn't really think to ask why at the time. Anyways, I asked the doctor about that yesterday and we talked about it for a while. Children between the ages of 1 and 10 are the easiest to treat. Children younger than 1 or older than 10 are put into a higher risk category just because of their age. Kids with a white blood cell count at the time of diagnosis higher than 50,000 are also put into a higher risk category. Carter's was 130,000. Very high. They used to think that the higher the number, the longer the child had had the disease. They've discovered that that's not the case. It just means it's a more aggressive leukemia. Therefore, the treatment has to be more aggressive. So he gave me a new "roadmap" of what the next round is going to look like. It will be about two months long and should begin around the first weekend in Feb. There's a new medicine that he'll be getting that requires he have a high ANC before receiving it. If it's not high enough, we just have to wait for it to come up. So that could lengthen this round. The doctor also gave me an overview of what the whole treatment will look like, start to finish. It's really more like 3 1/2 years instead of 3 years like we thought. Our 3 year timer begins after this next round. For girls, it's only two years. It's kinda cool to see it all laid out like this. I thought it might be overwhelming but it's not that bad. Maybe because I don't know what everything means. Ignorance is bliss, right? :) His numbers looked a lot better than just two days prior. White blood cells count was 1500 with an ANC of 400. Hemoglobin was 7.6 and platelets were 94, quite a bit higher. So it looks like his bone marrow is getting cleaned out of the leukemia cells and there's starting to be room to produce normal healthy cells again. Yea! The doctor told me that since he's doing so well right now, I only have to bring him into clinic once next week! But then I remembered that he needs to have his arm dressing changed, so we'll have to go for a quick visit on Tuesday for that. Either next week or the week after, they'll be taking out his PICC line and putting a port in his chest instead. He'll have the port for the rest of his treatment, all three plus years of it. I'm really excited to get that thing out of his arm and be done with the once a week dressing changes that he HATES! But I'm nervous about the port since each time they "access" it (every time they draw blood or give medicine, etc.), they have to stick a needle in through his skin. Carter STILL asks me every time we go to the hospital if they're going to poke him. They've only poked him twice ever and it was a while ago. He's terrified of those pokes! Now it's going to happen fairly often. Not looking forward to that. What am I looking forward to, you ask? Being done with the "yucky medicine"!! Only another week!
Overall, Carter is doing really well. The majority of the time, he's his normal happy self. Sadly, I'd kinda forgotten about his happy side since he'd been so sick and grumpy for a while. He's such a fun kid! He's so brave and I'm so impressed with his strength every day. He's just awesome. And he LOVES his baby sister! He really likes when she grabs his finger:
He's a great big brother.
He wanted to go for a bike ride the week we got home from the hospital. We didn't get far because it was pretty cold. Now he likes to ride in the trailer behind Dennison's bike.

He's been helping us cook.

Did I mention that he is being spoiled rotten!? Cause he is. And we love it. Thanks to everyone for the many cards, letters, and gifts that have been sent his/our way. We can't thank you enough! We are just amazed at your generosity and love and support. Getting through this alone would be difficult, to say the least, so we are so thankful to have so many great friends and family.


  1. Wow, it sounds like he's doing really well! I'm glad we live close to such a great childrens hospital so he can get the best care possible. I know someone who has a mom with leukemia. She has been in remission for like 20 years or something. Hopefully Carter can follow that same pattern! I can't wait to bring Baxter over on Sunday!

  2. We want you to know that your family is in our thoughts and prayers. If there's some baby sitting or anything else you need I hope you'll call us, we'd love to help.

  3. Guess I should have read your blog before sending my email..sorry! Glad to hear good news. He is darling. Keep it up :)

  4. Thanks so much for the updates Robin. Carter is such a brave little boy and we are so glad to read good news about almost being done with the yucky medicine and there being room for healthy cells to grow. We continue to think and pray for your family often!

  5. It's so nice to see the pictures and hear about his progress even if it is tiny steps. He's a champ and we're all rooting for you.

  6. keep the updates coming. I am so proud of you for being so brave and keeping all of us updated on what is going on. My prayers are definitely with you and Carter and the rest of your family. I love you Bin!!!

  7. I'll bet everyone's thrilled to be almost done with the yucky med! Thanks for giving everyone so much info here. It's nice to know what's going on and how he's doing. I hope you're doing ok too!!