Still in the hospital

Yep, we're still here. I got here this morning and they had just told Dennison that we'd be able to go home just after noon. Well, less than 1/2 hour later, the doctor came and told me that his blood culture had just grown something, which means infection. Bummer. The blood culture they took in the emergency room Tuesday night still hasn't grown anything, it was the culture they took yesterday in the hospital that has grown bacteria. Interesting. So they took more blood to do another culture and put him on a different antibiotic. As long as this culture is clean after 48 hours and he doesn't get a fever and nothing else comes up, he can go home Saturday afternoon/evening. But we're not getting our hopes up. He's doing well right now. No fever, not much pain, and he just wants to play letter games on the computer and eat Popsicles. And the beginning of his next round of chemo has been put off until Monday. So he should have the weekend to rest. That will be nice. That is, if we ever get out of this hospital!

Port Placement

Carter got his port put in today. This is something that we've been looking forward to and dreading at the same time. Now he won't have to have dressing changes on his arm every week. But in order to access the port, the nurse has to use a needle. I'm not sure which Carter would prefer.... but it doesn't really matter, now does it. So we had a check-in time of 8:00 this morning for the surgery. They didn't take him back to the operating room until about 10:45. I was amazed, once again, at how well he did on an empty stomach and having to wait for that long! While waiting, he played with his daddy:

We were all pretty tired....

Warning! This is the saddest picture ever! This was right after surgery. His nose is a little bloody from having a breathing tube during the procedure. He HATED all the stuff on his chest. Poor little boy, goes to "take a little nap" and wakes up with a very painful chest and a whole mess of stuff taped to it. Most of the time, there won't be anything on the outside of the skin like this. Shortly after he woke up, they came and took a chest x-ray to make sure it was in the right place and then they took the PICC line out of his arm. Yea, it's gone! Carter was happy about that. I think. It could've just been the morphine.
Before he went to bed tonight. He was not a happy camper. His chest hurt and he was exhausted. He asked to go to bed at about 6:30.
Unfortunately, he woke up a few hours later with a fever. He and Dennison are at the emergency room right now. It's looking like they'll probably have to spend at least tonight in the hospital. They will be doing a blood culture to check for infection and will have him on antibiotics in the meantime. It's killing me to not be there with him right now. Both of our other kids were already asleep for the night and since the baby needs to be wherever I am, it's just so much easier for Dennison to just take him alone. So, since I can't sleep now, I blog.

Tune in next time to see how the emergency room visit goes....
Sorry to leave you hanging.

Round One goes to..... CARTER!!

That's right, we are done with the first round of chemotherapy!!! Last night was the last dose of the yucky medicine (for now)!!!! I made this sticker chart for Carter a few weeks ago. Every time he took his medicine, he got to choose a sticker and put it on. Last night was the last sticker so he got his "special surprise".....

an awesome craigslist find

Sorry about the messy garage :/ It was cold and dark outside. Plus the battery for this bad boy wasn't charged up so they could only sit in it anyways. We are all so happy to be done with this round! We had our clinic visit yesterday as well. Carter was scheduled for another LP and bone marrow aspirate at 1:00 which means he couldn't eat anything after 7am. I was really worried because this boy eats more than I do these days, thanks to the steroids. Every ten minutes, he's telling us something else he wants to eat. But he did really well all day without food. He just keeps impressing me more and more each day. By the time we got to the clinic, he was reaching his limit. It's a good thing we were scheduled with his favorite doctor. I don't know exactly what it is about this particular doctor but Carter really likes him and always does exactly what he asks him to do. It's really cute actually. After the nurse took some blood, she came back in a few minutes later and announced that she had good news. Carter's blood counts are all looking really good. His white blood cell count is 4500 with an ANC of 2000!!! That's well into the "normal" range! It won't last long because he'll be starting on new chemo meds next week, but for now, it's awesome! Hemoglobin is 7.5 and platelets are in the normal range as well at 192,000. We are happy. His ANC needs to be at least 750 to start the next round and it looks like that won't be a problem at all. After the CBC, they took us to the procedure room for the two procedures they needed to do. They let me hold him until he falls asleep:
Then once he falls asleep (it only takes about 10 seconds, if that), they help me lay him down and then I'm shown the door. I go wait in the toy room until they come get me.

I took this picture while I was waiting for him to wake up afterwards. He's got great eyelashes. Once he woke up, we gave him all the food and drink he wanted and then headed home. I think he ate constantly until he went to bed. All day today he keeps reminding us that he does NOT have to take his yucky medicine. I guess he doesn't want us to forget :) So next week we should find out the results of all the tests and everything and have a better idea of what will happen from here on out. This first month is a lot of gathering information to determine what his exact treatment will be. So here we go! One month down, a lot more to go! Little victories :)

A special request

First of all, Carter's doing awesome. I will post more details soon, but for now, I have an urgent request. Tomorrow there will be a special drive to find possible matches for a friend who has leukemia and will eventually need a bone marrow transplant. So far, no match has been found. We don't know him personally but we know a lot of people that do. For obvious reasons, this is hitting close to home for us. All they need to do, is swab the inside of your cheek. 10 minutes of your time that could save a life! So please, if you have a few minutes tomorrow, I know it's short notice, but stop by.

The drive will be:

this Saturday, January 29 from 11 to 4

at the church building located at 10509 SE 5th St. Vancouver, WA 98664

donors need to be between the ages of 18 and 60

If you can't make it, that's understandable, but as you ask what you can do to help, one of the most practical answers we can give is that cancer patients world wide are always in need of blood and other donations. Carter wouldn't be having the success that he is currently having if it weren't for previous blood donors, as he's already had 4 transfusions this month. I've never been so grateful for all those blood drives that seem to always be happening!

Thank you all!

quick update

There was a moment when I thought we'd only be going to the hospital/clinic once this week. That dream was short-lived and our visits are now up to 3. We've got two down and one to go on Friday. Yesterday Carter just needed a dressing change on his arm. He was really brave! He still cried but not nearly as bad as usual. I was right by him telling him what they were doing and when they finished each step. That seemed to help a lot. He would ask, "are they done with the stickers now? Are they all done cleaning?" He's a control freak so it was nice for him to know exactly what was happening. Then today we went in for a pre-op appointment for the port placement next week. It was long and a lot of waiting for the amount of new information I received. Oh well. Carter did great because they didn't have to "poke him or take off his stickers and tape". So he was just happy as a clam.

To lighten the mood a little on this blog, here's a peak at a few fun things lately. We pretty much have to stay home and limit visitors to avoid exposure to germs and stuff. Last weekend, with Carter's counts looking pretty good, we finally felt good about taking him to the store as long as he stayed in the cart. He was really happy to be out of the house but not at the hospital. We found these cute pajamas for the boys on sale. I just can't get over how cute they are! The pajamas and the boys :)

You'll notice that Carter's face is a lot chubbier than usual. And his belly. That's the medicine's fault. And it probably won't last long. And Jude is scowling because we took a toy out of his hand for the picture. Next time we'll just let him hold the toy.

My awesome friend Kristi brought her dog over to play with the boys. Carter mostly liked watching him but Jude could not contain his excitement. Literally. We had to remind him countless times to calm down and be soft. It was pretty awesome. Carter's asked several times since then if we can go to Kristi's house and play with her dog :) It was a perfect break from the monotony of staying home and trying to entertain these kids.

My other awesome friend Becky (I have more than two awesome friends, these are just the two featured in today's post) made this hat for Carter. Isn't it so cute! His hair is starting to fall out. a little. We'll see how long it takes before he's Mr. Clean bald. But don't worry, we're stocking up on hats. He looks grumpy because he didn't want me to take his picture. I say if he doesn't want his picture taken, he should just stop looking so cute!

Until next time...

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.

clinic visit 1/14

I took my mom with me to the clinic this last time. I knew that Carter would need to be sedated for a couple procedures and I wanted to have someone with me to hold the baby and just for moral support. Did I mention that my mom is amazing and has been here trying to keep us sane for a few weeks now? And will continue that mission for another couple weeks? Thank goodness for moms! Anyhow, Carter's blood counts are all up since last time because of the blood transfusion. White blood cell count is 2300 with ANC of 100, hemoglobin is 8.9 and platelets are 50,000. Lookin good. After the CBC (complete blood count) we waited with a super grumpy boy for the sedation team to be ready. He couldn't eat all morning and was very hungry and mean. They finally came to take us to the procedure room and one of the nursed tried to steal my baby. Not really, but she did hold her for a minute. I couldn't get to the hospital in time for the last sedation a few weeks ago so this was my first time. I was really nervous about it, I thought it would really freak me out. They told me I could hold him until he fell asleep so I got up on the bed with him on my lap while he cried, "I don't want to take a nap!" over and over again. As they were about to put the sleep-making stuff (I don't know what it's called) into his IV, the doctor decided it was a good idea to tell me that this medicine is the same stuff Michael Jackson took when he died. Perrrrrfect, just what I want to hear at this moment. He's not my favorite doctor. Luckily, I don't think we'll be scheduled with him again anytime soon. Anyways, it surprisingly didn't freak me out at all to hear that but the nurse did apologized for him later. So they injected the stuff and not 5 seconds later, Carter was out like a light. They helped me lay him down and then my mom and I went to wait in the play room. It took a little longer than normal because it's a teaching hospital and there was a resident in with them learning about the procedures. They did another LP (lumbar puncture) and a bone marrow aspirate. Once we were allowed back in the room, I had all of Carter's favorite snacks ready and had ordered his favorite lunch, chicken and french fries. It took a little while before he woke up but they were able to give all of his chemo through his IV while he was still sleeping. So once he was awake and ready, we could leave. BUT (there's always a but) the doctor wanted us to go down a get an x-ray of his knee since it has been bothering him so much. Carter was really nervous about it but it went really quickly and the x-rays were all totally normal. We just have to wait out the joint pain. Yesterday and today it's been a lot better though. He still limps a lot but is in a much better mood and doesn't tell me every 2 seconds that it hurts. In fact, I think I only heard it once all day today! Things are lookin up! I've noticed just how much my mood is tied to his. If he's happy, I'm happy. But if he's in pain, or sad, or just tired, I'm a total mess. I'm sure you can relate - as a parent, I think this is always the case. It just seems to be intensified by a billion.

This is weird. It's weird that our lives have changed so dramatically and so quickly and that everyone else's hasn't. Normal, everyday things are still happening all around us. It just seems so odd that the world kept on going when our world seemed to stop. And then start again and go really really really fast. Family takes on a whole new meaning. And I'm so grateful for mine. SO so grateful for my husband and two sweet boys and adorable little girl. Even if life is crazy chaos right now, we're going through it together and we have each other. And a few truckloads of friends and family who are just begging to help us :)