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!
We finally got to come home yesterday afternoon. Friday night his level was at .52 and Saturday morning it was .25 (it has to be below .1 to go home). Since it was still kinda high, they didn't even check it again until Sunday morning at 6am. They must have missed the first courier because we didn't get the results back until after 1pm. But it was good news: .08! So we packed up and headed home. Carter's doing really well, aside from the 5 times he threw up yesterday and once today already. The Zofran they gave him in the hospital yesterday didn't seem to help much so I gave him some at home last night and it seemed to help a lot. Hopefully it will help today too. I'm not sure why it took him a day longer to clear the Methotrexate this time. Nor do I know why it is making him a lot sicker this time. But the doctors are not the least bit worried about it. We're excited to get another week and a half at home and then just one more scheduled admission! Then I think we'll have a 3 week break before starting "Delayed Intensification", which will probably be as bad as it sounds. Two months for that round and then Maintenance! We're getting there, slowly but surely, we're getting there.
Wednesday morning we came to the clinic and were then checked into the inpatient unit for the 3rd dose of High Dose Methotrexate. Carter had a 10:00 sedation scheduled for a lumbar puncture and chemo in his spinal fluid. BUT, since he ate two tiny grape nuts (yes, that gross cereal. Two teensy little nuggets) they couldn't do the sedation. The next available time wasn't until 4:00 that afternoon. We had 10 minutes before his 6 hour cut-off so he scarfed down a bowl of cereal and the fasting began. It wasn't nearly as bad as I feared it would be. He stayed busy all day, playing with play-do, playing in the rice box, riding the tricycle, etc. He only asked for something to eat a few times. They stared him on IV fluids right away so by the time 4:00 came around, he'd already met his urine parameters to begin the HDM. We went in for the sedation, which went perfectly (he always takes more medicine than an average child of his size since he fights going to sleep) and I ordered food for him so it would be there when he woke up. He immediately started eating his noodles with butter (his new favorite meal) and the fork just wasn't fast enough so he was shoving it in by the handful. The nurse walked by and nearly passed out from laughing. In between noodle bits, he would take a couple licks of his sucker or a bite of broccoli. He ate almost the whole plate full of food. It was impressive. He then received Vincristine and then the HDM started. 6:00 last night is when that was done infusing and his level was at 82. This morning at 6:00 it had dropped to 1.91. They started the "rescue medicine" at noon and drew more blood. It's now down to 1.05 which is higher at this point than the previous two times we've been here. The nurse just increased the fluids so hopefully that will help to flush it out of his system. We're still thinking and hoping that we'll be out of here sometime tomorrow.
He has been out of his room most of the time. It's been so fun to see him have so much energy this whole month. He's such a little sweetheart.
A lady with her harp came in and played a few songs for Carter. She gave him this little harp to play along with her. He thought it was pretty neat. Also, a different lady came around with her cat. He's an older cat so he is really good and just sits there and lets you pet him. Carter LOVED it. When we heard that the cat was coming, we went back to our room to wait for him and Carter decided that he needed to put on his doggie pants because he though the cat would really like them. Ah, the mind of a 3 year-old :)
I had to include this picture. My boys LOVE when Uncle Jerry comes to visit!
We're more than half-way through this round! Only one more scheduled admission left.
Carter is back home! He did really great with the medicine again. It all went really smooth, just like last time. And now we have another nice long break. As bad as that 8 day stay in the hospital was last month, it sure makes us appreciate these quick expected stays. We know how much worse it could be and we're just happy it's going so well. He feels fine the whole time and has more energy than we can keep up with. He is truly amazing.
