Carter woke up yesterday with a fever. He wouldn't even get out of bed, he just cried and yelled for me until I came and got him. He was feeling miserable. I called the hospital to tell them we were coming in and they said to pack an overnight bag just in case since last week his ANC was only 600. If it was below 500 now, he would be admitted. I gave him some oxicodone for his headache and by the time we got to the hospital he was feeling much better. His fever was gone, of course. We got his counts and his ANC was 9200! It could be because he just finished 5 days of steroids or it could be because his body is trying to fight off something or it could be a combination of the two. So when the doctor checked him out, everything was fine and normal except his heart rate was too high. That could be another sign of infection. He put him on IV fluids for almost two hours as well as gave him an antibiotic. His heart rate came down a little but still not normal. They told me the dose of antibiotics would start wearing off at about 10:00 this morning so just watch him closely for another fever or any other signs of illness. So far today he's been totally fine. I hope he's over the worst of it. I'm worried because his little brother has been pretty sick for about 5 days, fever on and off. I hope Carter won't go through the same thing.
Carter's clinic visit yesterday went great! White blood cell count is 1400 and ANC is 600. That's a little lower than they want it to be. We'll keep the doses the same for another month and then see what is looks like then. Hemoglobin is 10.5 and platelets 274,000. which are both really good. He did awesome the whole time. He was actually really excited to go to the hospital this time to play in the play room with his brother. He didn't have a sedation and the chemo he got only takes about 10 minutes to infuse. It was a good day. Our prescriptions were even ready and waiting for us when we got to the pharmacy so we missed rush hour traffic coming home! What a difference a year has made!
We were invited by the Make-A-Wish Foundation to attend a Dollar Tree meeting yesterday. Every year, Dollar Tree raises enough money through several fundraisers to sponsor a wish. They had us go and talk about what our family has been through and about our wish trip. It was a really cool experience! I was overwhelmed with gratitude for the generosity and kindness of these people. We were sent on that trip only because of countless donations from people we've never met. It was awesome to meet some people who worked so hard to make wishes come true for kids like Carter. So there is now a plaque with Carter's name and picture hanging up in the Dollar Tree regional distribution center. They had two big Spiderman cakes and two huge gift bags full of gifts for Carter. It was really great and I'm so glad we had that opportunity.
Carter's gifts
Everyone LOVED Carter. Of course. While we were up there talking he was running in circles around us and holding our hands and swinging like a monkey. He really put on a good show for them :)
Carter got another fever last week. Remember the days when a child with a fever just meant give em some tylenol and put them to bed early? 2 more years (and a few months) and that will be our life again, but for now a fever means to the hospital we go. He has a slight ear infection and is now on some antibiotics. We picked up the prescription here in town instead of at the hospital and the pharmacist was so nice and concerned. We've picked up a few of his chemo meds there before so they were on his record. He was sure to tell me that amoxicillin can raise the levels of one of his other meds in his blood. He called Carter's oncologist just to make sure that he was aware of that (of course he was but I was still impressed that he went to such lengths to care for my son).
Hopefully we don't need to make any more trips down there until his next scheduled appointment.
Wow. I still can't decide if this year has gone by really fast or really slow. Depends on what I'm thinking about, really. When I think about all that Carter's been through it seems reeeaaaaalllllyyyyyyy lllloooooonnnnngggggg. But when I think that my baby is already almost 13 months old I think this year has flown by. But tonight, I'm thinking about that stupid day one year ago when that dumb doctor (yeah, I'm hating the messenger) told us that our perfect little boy had leukemia. I remember so clearly certain moments of that night but much of it is a blur. I'm just glad we've put a full year between us and that lame-o night. I've been thinking about the roller coaster it's been ever since and thought about taking you all on a photo journey of this year. BUT, I don't want to. It's still painful to look at pictures from last January. And February. And March... I think you see where I'm going with this. So instead, here's some pictures from this past month. Carter is doing so well. It was very fitting that he included in his prayer tonight "I hope that I will never get a dragon again". I hope so, too, buddy. I hope so, too.
He has grown and learned so much through all of this. He amazes me with his maturity and wisdom and ability to communicate his emotions. He is even more stubborn now, but also very sweet. He still talks about different things that he's had to do and still has to do and it's sad and kinda cool how he describes it all. I like hearing his perspective. He's gonna do big things with his life.
We are glad to (almost) be rid of 2011. Bring on 2012!
The week before his scheduled clinic visit, Carter had to make an unexpected trip to the hospital because of a fever. He had a very minor ear infection. They took blood to do a blood culture and gave him a dose of antibiotics and sent us on our way. He's been totally fine ever since. He did laugh really hard at the nurse when she called him "baby" and told her, "do you know why I'm laughing? Because you called me baby, I'm not a baby!" He laughed and laughed.
Then last Thursday was his monthly visit. He did really well and all looks great. His ANC is down to 700 and his white count is down in the low teens ( I don't have access to his print-out right now), but all the other numbers are looking great. This drop is ANC is most likely due to the higher dose of one of his oral meds. They want it between 750 and 1500 so we'll so how it looks next month. While we were there, we got to go choose a gift for each of our kids out of this huge bin of toys. A family that had a child go through treatment there years ago donated 3 or 4 huge bins full of toys for the patients and their families. I am so amazed and uplifted by the generosity of people I don't even know who have done awesome things for my family.
He loved painting while we waited for the sedation team to arrive.
Carter had his monthly clinic visit today. Everything went great! He's doing so well. His blood counts are awesome: White blood cell count 3100, ANC 2400, Hemoglobin 9.9 and platelets 408,000. They like to keep his ANC between 750 and 1500 and since it's been consistently higher than that, they doctor increased the dosage on one of his medications. Whenever they increase or decrease the medicine during maintenance they do it very slowly in the hopes that there won't be a dramatic drop in counts. Other than that, everything is going fantastic.
He had a sedation today for another lumbar puncture with chemo in his spinal fluid. I have talked with the nurses a few times throughout this last month about doing a "conscious sedation" instead. Carter really hates the sedation medicine and he's been throwing up every time he wakes up from it lately. The conscious sedation is where they give him some other drug that doesn't knock him out but still dulls the pain. It sounds to me like the medicine that dentists use but I don't know how similar it is. They usually don't do it with kids so young but I know Carter would be still and cooperative. They couldn't get it arranged for this time but we talked about trying it out in Feb (our Dr. will be gone for our Dec appt and there's no sedation in Jan). But his sedation went so well today that I don't know if I'll even bother trying it. Also, I told Carter today what they do when he "takes his nap". I've never told him that they stick a needle in his back because I thought it would freak him out but his only response was, "And I don't even feel it? Because I'm asleep?" with a grin on his cute little face. So then I asked him if he wanted to try doing it without being asleep and he looked at me like I was crazy. I think we'll stick with the sedations for now. (After he woke up today his first words were, "I didn't even feel my back poke!") I am pretty sure I know the trick, it's all about an afternoon appointment. They try to schedule sedations as early as possible so the kids don't have to be fasting all day long. They just skip breakfast and come on in. For Carter, he does much better if he can have breakfast and drink juice the rest of the day. The downside is traffic coming home after an afternoon appointment is no bueno. But it's a sacrifice I will make for a happy boy. And was he ever happy today. He loves all the attention he gets from everyone at the hospital. The nurses are always so nice. He did something (don't remember what) and I jokingly asked him if he thought the nurse would get mad and he told me, "No, nurses NEVER get mad. They are always SO nice!" And his chemo pal came and did battle with him today:
This is Carter's favorite thing to do with him. They line up the dinosaurs and then Carter beats them all with his giant ant. Today they added ninjas and a transformer to the battle mix. They had a blast. And everyone was so excited to see how long and thick his hair is. Everyone commented on how great it looks and how handsome he is. Like I didn't already know. And in case you're wondering, there was no trouble at all today with his port! YAY!!!! A few nurses came in to tell me how excited they were that it's working now. It was a good visit and I'm glad it's over.
