Tuesday, November 29, 2005
I first would like to thank everyone who sent Joey a birthday card, gift, or called him on his birthday. It REALLY made him feel good. He actually had a great birthday. It seemed like it went on forever to me... He had a "friends" birthday, where Mike took Joey and Johnny with three of Joey's friends to play laser tag. Last week Joey received a birthday card everyday. That made him feel very special. THANK YOU EVERYONE!
We had a great Thanksgiving too. My Aunt Marti (from Michigan), bought us a complete dinner for 10 from Kroger. It was great! My dad picked it up for us about 12 noon, and we were eating my 12:30! We had many invitations to eat with both families, but we didn't want to commit to anything, not knowing how Johnny would be feeling.
Johnny had treatment on Monday of last week, and then a dose of PEG on Wednesday. Monday-Tuesday went really well. Much better than anticipated. He never got sick, and was surprisingly hard to keep down. He wanted to go shopping for a new skateboard and basically do ANYTHING to get out of the house.
Then Wednesday. Johnny had to go last Wednesday to get two shots of Asparaginase (PEG). He had this chemo once before, when he was first diagnosed in May/June. I remember when he got the shots back then. What TCH tries to do is lessen the whole pain/shot experience for the kids. The nurses try and "poke" the kids as little as possible, so when they give the PEG, it takes two nurses to administer the shots at the same time. One shot is given in the thigh muscle in each leg. The reason it is given in a muscle, is because it is so toxic that if given through the port, it could burn the artery. This was the first time I have seen Johnny cry. The nurses counted to "3", and gave the shots at the same time, and then Johnny's eyes got REALLY big, and I could tell that if he could have, he would instinctively pulled away. But we had him pinned. It's not given quickly like a flu shot either. Sure it's over pretty quick, but it probably took about 15-30 seconds. And from what I could tell, each second burned as the PEG entered his muscle.
When Johnny cried, it only lasted the length of the shot, maybe even less. He barely had to wipe his eyes when it was all over. Meanwhile, there was a teenager next to us that was screaming bloody murder over a finger stick. Yes, a finger stick. I wish I was joking. From what I could gather, her port was blocked (like what happened to Johnny), and so they were just going to get blood from her finger instead. She freaked out. Poor thing. Can't say I blame her. As much stuff as these kids go through, I would probably have a melt down myself.
Johnny's legs hurt him for a few days. At the clinic, I put a little package of saltines (2 per package) down on his leg, and he screamed. I mean a real scream, and then said to me "what are you doing?!?!?" I had no idea... He had a hard time walking to the car, but refused to let me carry him or get in a wheel chair.
Then next day was Thanksgiving. It was weird watching the parade without the smell of roasting turkey filling the air. But I have to say, it really was nice not to worry about making everything. I was able to sit with the kids and watch the parade with them. And of course look at the ads for the next day's sales! Johnny still seemed anxious to get out. He was bummed to find out that all of the stores are closed on Holidays. I told him that later in the day we would drop by my mom's house and see everyone. All the kids were excited about that.
We finally got ourselves together and headed to my mom and dad's about 4:30. Johnny played with the train under the tree and then came and laid down on my lap. I asked him if he was ready to go home and he said "yes". Mike took him home and left me and the kids at my parents. Johnny only lasted about 30 minutes...
I woke up Friday morning about 4:00am. I tried to go back to sleep, but all I kept seeing was "while supplies last", going through my mind. I got up and was at Toys R Us at 5:00am. The line was already around the building. I couldn't believe it. I asked person in front of me what time they opened and she told me "6:00"... I stood in line and chatted with everyone for the rest of the time outside, once we were in, it was every man for himself! Luckily, I was able to get all of the kids shopping done and I was home before anyone woke up. Mike didn't even know that I left. I told him we had a conversation before I left, but he had no recollection of it.
Friday and Saturday we all very slowly got the Christmas Tree and a few decorations up. Johnny would have his spurts of energy lasting about 5-10 minutes, and then rest for a few hours. He was asleep about 9:30 each night and sleeping about 12-13 hours at a time. I was glad to see him getting his much needed rest.
Sunday morning Mike was going to take Joey to spend the day with Marci, while he, Liz, and Gordon went surfing. Mike and I got up about 7am, and as we got dressed and down stairs to get ready for the day, Johnny bounded around the corner. Talking up a storm, with boundless energy. Just following us around the house, talking a mile a minute about crazy things, nothing related to the other. Mike asked him why he was up so early and he said "I was up before you, I was waiting for someone to get up. My tummy was talking to me all night long..." Mike said "the steroids have definitely kicked in". Pretty much from that point on, Johnny has been eating non-stop. Sunday night we had tickets to see the play "A Christmas Carol". I took Grace with us, Mike stayed home with Johnny and Sophie. We had AWESOME seats -- 4th row, center. Thank you Jennifer and Allen!
We went to the clinic on Monday (Nov. 28), and as we were driving Johnny asked if he was going to get anymore shots in his legs. I told him no, that the ones he got last week were the last ones like that. I'm not sure if he believed me, because he still had a worried look on his face. Yesterday was another dose of Doxorubicin, and Vincristine. The side effects of this round were more prominent than last week. When we came home he was wiped out. We had Mike's mom, my mom, and Marci over for Joey's birthday dinner. Johnny wanted to be upstairs in bed. I asked him if he needed a Zofran and he said no. I asked if he needed a bucket in case he got sick and he reluctantly said "...okay". I made him take a Zofran. I'm glad I did, because it didn't take to long after that he wanted to come down and join everyone. I carried him because his legs were hurting him from the Vincristine. That's the stuff that makes him walk like Frankenstein. Today, he still has leg pain, and in his jaw as well. It hurts him to sit on anything hard like chairs and floors. Because the drugs have an accumulative effect, next week could get worse. Luckily, it only lasts a few days, and then he is back to himself.
Tonight when he was sitting on Mike's lap looking at surfboards on the Internet, he said he wished that life was like a DVD player, then he could fast forward past this stuff. Me too...
We met one of his friends from camp on Monday too. Cadence had his port taken out in August, and was on maintenance. He found out in October that he had a relapse in his left testicle. It was taken out, and now he is getting ready for a bone marrow transplant. If he makes it to transplant (he has a 20% chance), and it is successful, he has to be in isolation for SIX MONTHS (at this point his chances jump up to 50%)! Before you get too worried, Cadence has T-Cell ALL. It is a difficult one, he actually had to get radiation in his protocol. Another little boy, Chaise, who is only 5, is due for transplant in four days. I have been reading what he is going through, and I just wanted everyone to keep these kids in their thoughts and prayers too. They have to go through so much!