So we're back in the hospital for the second time getting the High Dose Methotrexate. Everything is going well so far. Yesterday morning in the clinic, the nurse was trying to draw blood from his port (best port access yet!) and it was going really slow, as usual. She decided to put some TPA in there, which is an enzyme that will break up any clots or protein build-up or whatever else. Once she puts it in, it has to sit for an hour. I was kinda bummed about the time delay since the sooner we start the medicine, the sooner we finish and can go home. But the TPA really worked well! I hope it lasts so that all future blood draws won't take 10-20 minutes instead of the typical 10 seconds. Anyhow, we got to the clinic at 10:00am and didn't start the medicine until 6:00pm, so as I'm writing this, he will be done with the Methotrexate in 15 minutes. In other good news, the lockdown has been lifted so Jude can come see us in the room! And in still more good news, Carter's weight is up a few pounds from last week and his counts are looking really good. White blood cells 3,000 with ANC of 1900! Hemoglobin 8.5 and platelets 270,000. They shouldn't go down much, if at all, for the next month and a half. So aside from being in the hospital every two weeks, this round is shaping up to be pretty good.
There's been a breakthrough at our house! Carter learned how to swallow his pills! I used to crush them and mix it with chocolate syrup, applesauce, raspberry syrup, etc. Medicine time every night is not nearly as painful as it used to be. We're all very happy about this new skill :) What makes it even better is that Carter will be on the "yucky medicine" (steroids) again in a few months and now he can just swallow it quick. I know they have gel caps, I'm just hoping they have them in a small enough dose for him.
Here's a video of him taking his medicine last night. He always has to do a practice before he does it for real :) Just about the cutest thing ever.
What a fantastic day and week! It's been exactly one week since Carter came home from the hospital last time and we don't have to go back for another 4 days! It has been so great just being home and enjoying time together. It feels so.... normal. Normal, being a relative term of course. The little man has been doing awesome. He's been genuinely happy. It's amazing to see.
I know this is supposed to just be a blog about Carter and his fight against Leukemia, but I can't let the emotions of this Easter day go by without sharing. After all, facing a life-threatening illness in my child and my faith go hand in hand. Today, I am overwhelmed with gratitude. Gratitude in knowing that the end of this life is not really the end. Gratitude for my Savior and all he went through to make it possible to be with my family forever. I can't imagine my family going through this without this knowledge. Thank you all for your love and prayers and kindness and generosity. We can't thank you enough! Happy Easter!
(If eating with salad tongs is what it takes to get him to eat, then so be it! He calls it his "handy tool")
Carter got to come home this morning!!! He did so awesome in the hospital the whole time. Yesterday, before they started the "rescue medicine", his toxicity level was at 88, which they say is perfect. In order to be discharged from the hospital it has to be below .1. After the first dose of "rescue medicine", it was down to .2! After the second dose it was .11 - so close! That was yesterday afternoon. Then the test this morning is was down to .05!!! So it was less than 72 hours from the time they started the medicine to the time he got to leave. I was expecting him to be on the faster side, because he's so awesome, but wow. Lets hope the next 3 times go just as quickly. And we don't have to go back to the hospital for 11 days!
Thursday Carter started his 3rd round of Chemo: "Interim Maintenance". This is exciting for a couple reasons. First of all, our 3-year timer begins now. So mark you calendars, folks! April 14, 2014 Carter will be DONE!!! Secondly, he only has one more round after this (which will be pretty intense, but we won't think about that yet) before we get to "Maintenance" which lasts for what remains of the 3 years. At that point, the chemo isn't too crazy so he'll feel good., his hair will grow back and he'll start school and everything. He's doing it! We're getting closer to Maintenance!! So, back to this round. So far, it's going really well. It's not as scary as I thought it would be. It's a bummer that he has to be in the hospital every two weeks but it's not too bad. It started Thursday morning with a sedation and lumbar puncture with Intrathecal Methotrexate injected into his spinal fluid. 6 hours after that, the High Dose Methotrexate begins and is infused over a 24 hour period. That first night he wasn't feeling great but still not too bad. Check out that gigantic bag of poison, I mean chemo hanging from his IV pole. Usually his bags of chemo are really small and even that seems like a lot to me. This is just ridiculous. I can't believe that whole bag just went into my son's veins.
Since he's not sick like last week, he's not in isolation. He can leave his room whenever he wants and now that the chemo is done he can even leave the unit so he can see his brother! They were both very excited to see each other out in the hall yesterday.
And he got to go to the play room and do arts and crafts. One of the volunteers there made him this dinosaur out of clay. He loved it and started to "cook" food for him and then feed it to him with a fork :)
His chemo pal came to play with him yesterday afternoon. And Grandma also came to be with him and even spent the night in the hospital with him. I think he had a pretty good day yesterday. The nurse is guessing that we'll get to leave Monday morning.
Along with the Methotrexate, he's also getting two other drugs, both of which he's had before. Vincristine and Mercaptopurine. The "rescue medicine" should start sometime today. So far so good :)
We got this this cute movie in the mail from the American Childhood Cancer Organization called "Paul and the Dragon". It took me almost a month before I let Carter watch it. I'm not sure why. Now, I wish I'd shown it to him a lot sooner. It's about a little boy, Paul, who finds out he has cancer. The doctor, in an effort to explain the situation to this young boy, tells him that the cancer inside of him is like a dragon. So Paul imagines himself inside his own body and fights his "dragon" with the help of his special medicine and chemotherapy. It's so cute and well done. The first time we watched it, we didn't tell Carter anything about it beforehand. All the things that Paul was going through (being in the hospital a lot, getting shots, being sick, getting special medicine), Carter would say, "that's just like me!" He was so excited to see someone else going through similar things. Ever since then, he carries his sword around and pretends to fight dragons. And when we were in the hospital last week he kept telling us that he was fighting his dragon and when his dragon was dead, then we could go home. What a smart little boy! "Paul and the Dragon" is the new favorite movie around this house.
Our stay at the hospital is finally over. Whew, that was a long one, the longest yet. 8 nights and almost 9 days. It wouldn't have been so bad if we hadn't heard every day, "Maybe you can leave tomorrow." Tomorrow would come, and we were still there. It was very frustrating. It was so hard to see how being in the hospital, stuck in that small room, not getting out of bed the entire time, being woken up several times a night was better for him than being at home. But I'm no Oncologist, so there he stayed. They wanted his ANC to be at or close to 500 before they would discharge him. Today is was 494! The entire stay, his chest was hurting him where his port is. It was really sad to watch him slump over all they time from pain. It took us a while to talk him into letting the nurse de-access him today so we could go home. He cried for a while after wards but now he's just happy as can be and not complaining of any pain. And he's walking! He hasn't walked for 8 days now!! I'm glad he remembers how :) All I can say is, it's so amazingly nice to be home with my whole family again! And having Grandma here is a sweet bonus.
Once again, we were possibly going to get discharged from the hospital today and Carter got another fever. Poor little guy's been sleeping all day. He even fell asleep while his Chemo Pal was here to play with him. I sure hope he gets feeling better soon. Needless to say his next round will not start today as planned. It's scheduled to start on Monday, but who knows.
Other than the fever, today has been a pretty good day at the hospital. A volunteer came in with her guitar and sang to Carter. It put him right to sleep. Also, I got a free massage. Oh, and I had a really yummy pizza with pineapple, chicken, and strawberries on it. Yum! Anyways, enough about me, this is "Carter's Story". I'm so glad he's getting some good rest finally. Hospitals are not the best sleeping environment. Hopefully he'll sleep off the fever and we'll get to go home in a few days. His numbers are still coming up slowly. His ANC is up to 150 now! Wahoo! (That was sarcasm - that's still really low.) Wish us luck!
Everything was falling into place for us to leave the hospital today. No fever since Friday, negative blood cultures, counts were coming up (very slowly), and then it all fell apart. Carter woke up and asked me to hold him this morning. The second I picked him up I knew he had a fever again. NOOOOO! That means another couple days in this hospital room. Which, by the way, seems to be shrinking... I should look into that. But at least I can leave the hospital and trade with Dennison. Poor Carter is going crazy in there. Luckily, the Child Life Specialist (her job is pretty much to make the kids happy) brought him some new toys today. I thought he would be devastated when he found out that we couldn't leave today (I certainly was) but he was ok with it. He's a trooper. I asked the doctor what he thought caused the fever to come back today after being gone for 5 days and he said it's probably just a virus but he can't let us go home in case it's more than that. So they did blood cultures and gave him Yylenol. The fever went away pretty quickly after that and hasn't been back. There's a very small chance we can go home tomorrow but mostly likely it won't be until at least Friday.
BUT, looking on the bright side of things: Carter has been very interested in learning how to read so we've been practicing on the white board in his room. It's been really fun.
My mom is back! Hallelujah.
I just have to keep reminding myself that it could be a lot worse. And then I pray that it won't be :)
Carter is doing much better but is still in the hospital. The doctors think there's an infection in or around the incision from the port placement. The scar is bright red instead of pink and he's been having a lot of pain there. He's been feeling ok today and hasn't needed any pain meds since 4am. He hasn't had a fever since that first day after he got some antibiotics. That's a good sign, they say. His blood cultures are still clean and it's been about 48 hours. That's also good. At this point, we're just waiting for his numbers to come up. Friday his white blood cell count was 300, yesterday it went down to 200 and today it's back up to 300. Hopefully it will make a big jump up tomorrow and we can go home. He got more blood this morning, just red cells though. His platelets have gone up on their own from about 75,000 to 105,000. So everything is looking alright except for his white cell counts. These are the signs that are on our door. None of the patients are allowed out of their room since the unit is still on lockdown. And because Carter had a fever, anyone who comes in has to wear gowns and gloves and masks. Not that this is all that new for us but it's still kinda weird.
Carter just keeps telling me he wants to go home. He's even cried about it a few times. And even though Jude has been to the hospital a few times these last couple days, he has to stay out in the hall outside the unit. They both miss each other so much, which is funny because they pretty much fight all the time. They just want to see each other and it makes them both so sad that they can't. I really hope we can go home tomorrow!
We went back to the hospital on Thursday for another blood transfusion. Carter was really sad that we had to go to the hospital and Jude was really sad that he couldn't come with us. So we all went to the hospital together. Jude isn't allowed in the clinic since it's still on "lock-down", so Dennison and I took turns between him and Carter. It worked out pretty well and Carter was very happy that his Daddy was there. We were there a long time, so by the end we were the only ones left in the clinic. The nurses let Jude come in as long as he wore a mask. At first he really didn't want to but I told him he couldn't go see Carter unless he wore a mask. That was all it took. After the transfusion was complete, we have to wait half an hour to make sure he doesn't have a reaction. During that time, they took his temp and it was 100.3. Bummer. I thought we were going to have to be admitted. But then half an hour later they took it again and the fever was gone! Yea! So we went home. Well, Carter did not sleep well that night and in the morning (yesterday) he was burning up again.
Yesterday was a terrible day.
I told Carter that we would have to go back to the hospital since he had a fever and he completely lost it. I mean really really mad. He was crying and crying and so I told him that if we didn't go to the hospital then he would just keep getting sicker and sicker. His response was, "I want to just keep getting sicker and sicker!" This eventually led him to say that he just wants to go to heaven. He would rather die than go to the hospital?!?! Granted, I don't think he fully understands what it means to die, but it was still heart-breaking to hear. He cried himself to sleep on the way there and then kept crying when he woke up. The port access was the worst one yet. Which was especially sad because the day before was the best one yet. Our usual nurse was at lunch when we got there so we had one that we've never met before. Carter and our usual nurse have a deal that he can tell her if he needs a break and she'll stop for a few seconds for him. He told this new nurse that he needed a break and she laughed and said, "I haven't even done anything yet" and just kept pulling the tape off his chest. I've never heard him scream and yell like that before. It was awful. To make matters worse, the one doctor that I don't like was the one to come check him out. He's just not very good with kids (why is he in pediatrics??) and Carter really doesn't like him either. He started crying the second that doctor walked in the room. After the access, his port site was really hurting him. Being accessed two days in a row will make it pretty sore. The doctor gave him some morphine and that made everything better. He got really goofy after that and we had some good laughs. Right about the time it started wearing off is when we finally got a room in the inpatient unit (they had been all full until about 5:00, so we had just been hanging out in the clinic). When we first got there, all the nurses and doctors started coming in to introduce themselves, take his vitals, and check him out. He threw up shortly after getting settled and then got the chills and was shaking really bad. It was horrible to watch. They gave him more tylenol and morphine and he fell asleep. A little while later another doctor came in to check him out and woke him up when he was pushing on his stomach. He cried for a minute then fell back asleep. About 10 minutes later he was talking in his sleep saying, "don't touch me, owie that hurts, stop touching me!" I've worried about the emotional trauma caused by all this but after hearing that, it's all I can think about. My poor little boy :( By this time, I'd been crying pretty much all day and felt like I was at the end of my rope. So I traded places with Dennison. I had the car so I asked the nurses if they could just keep an eye on him for about an hour while I drove home and Dennison drove back. Then I asked Carter if that would be ok and he was fine with it since Daddy would be coming. So I was going over with him how to call the nurse if he needed something and he grabbed the button and said, "Oh, I have to tell the nurse something." I asked him what he needed to tell her and he said, "That I am going to get one big new fish." Haha. I stopped him from pushing the button and reminded him that he's only supposed to call if he needs something or needs help. Who knows what he told them while I was gone. When Dennison got there he was fine but said, "You were taking a long time to get here!" He's such a big boy :)
This is pretty much the face he made all day: And those three little guys above him are "bloodbug-eating monsters" courtesy of Grandma. Carter was very excited when he got them in the mail and wants to take them everywhere so they can "eat all those yucky bloodbugs!"
So he will be in the hospital until 1. His fever is gone for 24 hours 2. His white blood cell and ANC counts come up (what point they need to reach depends on the doctor) 3. His blood cultures from yesterday are clean after 48 hours and 4. he's looking good and feeling good.
Bleh, I'm glad that day is over. Here's to hoping today is much better!
