This week has been a little rough for Carter. Ever since his shots on Monday, he hasn't walked much. I've been carrying him to the bathroom, to the table, to bed, etc. There was some of this:
But mostly a lot of this:
And this:
He's been exhausted, falling asleep a couple times a day. I'm having flashbacks of Induction. It makes sense though, since it's pretty much the same medicines as he got that first month. And he's gained a few pounds this week also from the steroids. One other lovely side-effect of the steroids is that he sleeps terribly. He wakes up at least 5 times every night and still wakes up for the day super early. It's really no wonder he's so tired. He's off of the steroids for now until next Thursday so hopefully we'll all get some sleep around here!
Anyways, to the clinic visit. It went really well. The port access was the best one yet by far. I mean I wanted to cry it was so good. I brought little brother along again this time and I think it helped Carter be extra brave. When we got in the room I started reading a book to the boys. The nurse came in a got all set up and I put Carter on my lap. I started to unbutton his shirt and he said, "No, I want her to do it!" So the nurse did it and I just kept reading. He started chewing his gum (the stuff they use to clean the site is really strong and it's right by his face so he always has to have mint or gum or something to help) and he plugged his nose and we just kept reading and talking about the book. Before I knew it, she had put the needle in and Carter gave a little, "ow" under his breath and that was it! I didn't want to make a big deal of it so I just kept reading. Once she was done getting blood and put the tape and stickers over the needle, she got up to leave and then I said to Carter, "Is she already done?!?!" And he looked so proud of himself. Then he wanted to call Daddy to tell him how brave he was. It was awesome. Then we hung out in the playroom while he got his medicine. The de-access wasn't quite as smooth, but still not bad. By that point he was really tired and a little grumpy so I don't blame him. Overall, it was a really good visit. His numbers are still really good, better than last week even. White blood cell count of 8,800 with ANC of 7,900!! Hemoglobin 13.1 and platelets 345,000. The doctor said his marrow is probably still on the upward swing from the recovery period we had before this round. They will start going down in a week or two. But the rest of the day yesterday and so far today he's been doing great. Running around, playing, and even doing stuff for himself that he stopped doing months and months ago: Getting himself dressed, throwing his trash away, and getting himself a drink or snack. And the boy doesn't stop talking! I don't know if it's just coming with age or if all this craziness has something to do with it but he is becoming very talkative and outgoing. It's so fun to see. So this week has the potential to be really good, cross your fingers for us :)
I was feeling REALLY brave today, taking all 3 kids to the clinic!
We went into the clinic for two shots of PEG-Aspariginase in Carter's legs today. Before we left this morning, I was helping Carter get dressed and he told me that he needed to wear a button-up shirt instead of the t-shirt I had picked out for him. Then he told me to put the cream on his chest (to numb it before his port access). This was one of the very few visits when he would not get accessed and of course this is the time when he's super cooperative. I am still very curious to know how it would have gone had he gotten accessed today. Not curious enough to have them do it, though :) Anyhow, his little brother was getting very sad about the idea of being left anywhere today, and knowing it would be a pretty quick visit with most of our time spent in the play room, I just loaded all of them up and took them all with me. This was the first time I've taken all 3 by myself. It went pretty well. Carter was in a fantastic mood all morning until he got the shots. Totally ruined his day. We have to wait there for an hour afterwards in case he has a reaction to the shots. He still hasn't stood up or walked since getting them 5 hours ago because his legs hurt too much. Anyways, that was our day so far. Back to the clinic on Thursday for more chemo.
Today was day one of "Delayed Intensification" and was also Carter's birthday. It started off with a sedation for Intrathecal Methotrexate (injected into his spinal fluid) which meant no birthday breakfast. When we first got there, the lady at the front desk (who has been kinda rude to us on a previous visit) gave me some attitude about being late. I guess they had my appointment as being at 8:00 but my appointment paper and reminder call both told me 8:30. Then the triage nurse came to get us and more attitude was thrown my way for being "almost an hour late!" Carter was already really sad that we had to be in the hospital and that was pretty much the last place I wanted to be also, so by the time all this happened and we finally got to our room I was feeling very frazzled and upset. The sweet nurse came in to do Carter's access and draw blood for the CBC. She could tell I was on the verge of tears and asked me what was wrong. I started crying and told her about the appointment mix-up and everything. She was very nice about it all. Anyways, then she needed to do the access and Carter was not having it. He climbed under the chair in the corner to hide - that's a new one. I had to move the chair to get him and hold him down for the access. Now I have a few scratches on my arm, it was a rough morning. During this craziness, my least favorite Doctor came in to do his exam. The nurse told him she'd come get him when she was finished and he acted very put out - we were running late, after all! I was not excited that we were on his schedule. Once he was access and the blood was drawn and he was calmed down, our doctor came in. Carter's official doctor. I could've jumped for joy at the sight of him. He talked with me for a little while and helped us both feel better. Then we got some zofran and were off to the playroom. He got to play for a few minutes before they came to get us for the sedation. I had to carry him to the room because he tried to run away. He cried until he finally fell asleep. While he was sleeping I took a little walk outside to regroup (sorry, this is turning into a mommy-venting post) and when I got back, Carter's chemo pal was there. We talked while we waited for Carter to wake up. He got both of his chemo meds while he was still sleeping and started to wake up right as the nurse was going to de-access his port. I told her to just hurry and do it quick before he was all the way awake. She got the tape off and needle out so fast! I picked him up and started talking about birthday cake and showed him his friend was there to see him. He looked down and his chest and asked, "is my tubey out already?!" From there on out, he was a happy little 4 year-old. The nurses came and sang "Happy Birthday" to him and he had birthday cake for breakfast. He played with his chemo pal for a little while and even got a few new toys from him for his birthday.
Chocolate cake on his face and a new airplane toy
Then we had to go down and pick up some meds from the pharmacy. We stopped by the fish tank and read a few books while we waited for it to be ready.
He wanted Carl's Jr's chicken stars and a milkshake for lunch so we picked some up on the way home. He put the straws in like this and told me it was so we could both drink at the same time :)
We played outside, went to the store, visited the fish hatchery, had waffles for dinner, and watched the rest of the 4th Shrek movie. The day ended well despite it's rough start.
Here's a list of the medicines he'll be getting this round. He's had some before. The ones he hasn't had are very similar to ones he has.
Vincristine - he's had this one every round so far
Peg-Asparaginase - leg shots, had first two rounds
Cyclophosphamide - all day clinic visit, has had before
Cytarabine - I inject into his port at home for 3 days, has had before
Intrathecal Methotrexate - into spinal fluid, has had last two rounds
Dexamethasone - steroid, similar to Prednisone, some say it has stronger side effects
Doxorubicin - very similar to daunorubicin which he's had before
Thioguanine - I forgot to ask him about this since he won't get it til next month but I think it's similar to the Mercaptapurine that he's had before
He got Vincristine, Intrathecal Methotrexate, Doxorubicin, and Dexamethasone today. He'll be on the steroids for a week then a week off then a week on again. He'll get the leg shots on Monday, the Vincristine and Doxo again on Thursday. A week after that he'll get them again and that will be the last of the Doxo. Yay, that one sucks. Next month is more craziness and I'm too tired to tell you about it now, you'll have to wait :) Lots of drugs, lots of clinic visits, and like we tell Carter, it will all make his "dragon" smaller and smaller and smaller until he can finally squoosh it. I think we'll have a giant party for that...
His blood counts, if you're curious, are looking awesome. White blood cell 3700, ANC 1500, hemoglobin 12.8, and platelets 396,000. I kept forgetting to post them for all of last round but they were always pretty similar to his - didn't fluctuate much. They will start to go down again soon with all this medicine they're pumping into his veins.
Our Carter is 4!! Well, not officially yet, but we pretended it was his birthday on Saturday. He will be going back to the hospital on his actual birthday :( We could've postponed the clinic visit a week but we really just want to get this round over with! So we had a little birthday party for him and invited some little friends his age. He had a blast. Grandma even showed up for the occasion.
I let him put the "Happy Birthday" candles on his cake all by himself. I think he did an excellent job.
This was the one thing he really REALLY wanted for his birthday. A Spongebob fishing pole. He played with it all day long.
Baby Carter
We had so much fun celebrating Carter's birthday. Here's to many, many, MANY more birthdays for our awesome little guy.
We went to the fish hatchery over the weekend and he loved feeding the fish
He looks good, he feels good, life is so good right now.
Last Friday was the last day of the oral meds for Round 3. We're on our two week break between rounds and it's heavenly. This also marks the end of our scheduled admissions! Hallelujah! Next round starts a week from Thursday. The way our doctor described it was "the first 3 months smooshed into 2 months". Sounds fun, right? His counts will be pretty low for the majority of the two months and the chance of fever with neutropenia (ANC below 500) is high, which would mean at least a few days in the hospital. It's going to be crazy and intense and we're already excited for it to be over. Hopefully he will feel ok throughout. He's such an amazing kid and I know he will continue to surprise and inspire the rest of us.
So he's not home yet, but will be very soon. Right after the medicine was done infusing his level was at 51. 6 hours later it was down to 1.09 and this is when the rescue medicine is started. The next level draw was down to .43 and this morning it was .07 which means HOME!! There were a few hiccups along the way this time. Very small things, but I'll share anyways since I know you're all at the edge of your seats. Yesterday, one of the Child Life Specialists came to talk with Carter about his port getting accessed. The event of this happening every time we go to the hospital hasn't gotten much better. There's been a few times when it wasn't as bad but then it's always followed by the next time being horrific. This time was one of those horrific ones. So she thought she might be able to help him by giving him the opportunity to access a port on a doll all by himself. I thought it was a good idea and probably couldn't make things much worse but had potential to improve the situation a lot. She brought her puppet doll in and Carter started getting nervous. She took out all the little supplies and was showing him and talking about it all. She asked him if he wanted to put the needle in and he didn't want to. So she went ahead and cleaned and got it all ready, all the while having a little conversation with her puppet. Carter got up and slowly backed away from her and ended up on the opposite side of the room where he sat down on the bench and curled into a ball. I went over and held him on my lap and tried talking to him. He finally told me that he was scared for the doll but mostly he just didn't like that the doll was "talking". It made him very nervous. So she got out a couple littler dolls that are just plain white cotton and gave him and Jude markers to color on faces and clothes. Then she put a little "tubey" into the little dolls chest and Carter had fun pretending to give it medicine and draw blood. So the whole thing ended ok, despite the bad start. He now has his own little doctor bag and doll to take care of.
Last night, the nurse couldn't draw blood from his port. It has been very slow in the past. She was finally able to get enough to check his Methotrexate level but not any more to do their routine checks. She put some TPA in again but it didn't seem to help. This morning, it just started working again. Weird. I don't know, I'm just glad it's working now so they could check his level and it's good enough to come home!
We also didn't have a car at the beginning of this admission. Thanks to some amazing friends, we were still able to get there on time. Our car is back up and running and hopefully won't give us anymore issues anytime soon. Perfect timing, huh?!
I often see signs on patients doors that inspire and uplift. I really liked this one. My favorite signs are the ones that say "LAST CHEMO!!!" I get so excited for those little fighters and want to run in their rooms and give them a big hug.
Carter has been doing awesome. He has had so much energy and is just full of life. The nurses and doctors are all very impressed with his energy level. We are so proud of him and never cease to be amazed by him.
And I have to say THANK YOU again for all the help. The cleaning, the meals, the borrowed car, the good friends with listening ears, and everything else. We are so grateful to have such wonderful friends and family. Thank you, thank you!!
Carter is officially done with his last dose of High Dose Methotrexate! He finished it at 5:30 today and now we just have to wait for him to clear it from his system and we'll be back home! Everything is going well so far. Yesterday they did an ecocardiogram to check out his heart. One of the medicines that he'll get next round can cause heart damage so they want to make sure everything looks good and healthy first. And his little brother got to spend the day at the hospital with us today. They had a blast together. Carter's numbers are looking really good right now. So good that (barring any unforeseen issues) we won't have to go back to the hospital for almost 3 weeks! Wow, I don't know what we'll do with all that time. His next visit will be the beginning of "Delayed Intensification". It will be 2 months long and very intense. I, for one, am not looking forward to it. Anyways, I'll let you know when we're all back home together!
