Monday, November 14, 2005
MAYBE NEXT WEEK
Maybe next week Johnny can start his treatment.
We got to the clinic this morning and it kind of started off on the wrong foot. When Johnny's port was getting accessed, the nurses couldn't get a blood return. It took over 7 saline flushes (more than 30 minutes to do a 3 minute job) so I asked if they could take out the needle and try again. The nurses HATE resticking kids. I don't blame them. The kids hate getting stuck over and over again too. Luckily, we had two of our favorite nurses, Beth and Erica. Since they are both great at what they do, I was a little concerned when they couldn't get his port to work. Johnny's PA, Cara, came in when she heard that we were having problems. She suggested that we start over, get a finger stick to get blood work going, and try the port again later. If it didn't work the second time, there was a medicine that could be pushed through the port that would dissolve whatever could be blocking it.
Johnny was not happy. He never cries, and never says a word, but this morning he came close. For some reason, all kids hate getting their port accessed. If given the chance, they would much rather have an IV in their hand or arm, or get a finger stick. I asked why, and from what Johnny tells me, it's the pressure on the port he feels when they access him that bothers him the most. Most kids don't like the taste of the saline flush either (it's weird they can taste it). Johnny says he doesn't taste the saline, but I think he does because I can see him swallowing and swallowing and he flexes his feet when the nurses give it to him.
This morning he was extra anxious too. It was a big day for him, spinal tap (LP), vincristine, dexamethasone, and doxorubicin (the stuff that is really hard on his heart). Last week on the way home I asked Johnny if he wanted me to tell him what the next part of his protocol looked like and what was going to happen to him. He just looked out the car window and shook his head "no". He knew that today was a big day, but he really, really hates getting LP's. can't say I blame him.
All of the "problems" with his port didn't make matters any better for him. Beth took out the old needle and started to get a new one ready. Johnny looked at me with both fear and concern in his eyes, and softly said, "Can we put more numbing cream on first?". Beth is really great, she understood, and did exactly what Johnny wanted. When Johnny realized that he would still have to get his port accessed even after the finger stick and blood work he was completely bummed. He didn't want to listen to the iPod, or watch his favorite dvd, Ultimate X (I know it sounds like a porn movie, but it's really just highlights from the X-Games).
The results came back and Beth said "It looks good! His hemoglobin is 12.8, and platelets are 275, but we are still waiting on his ANC. His white count is 3.2, so I'm sure his ANC is fine.". I was so excited. I just wanted this day to be over with for the little guy. Then Cara came in and told us his ANC is 300, down from 580 last week. I was crushed, I think Johnny was too. Even though he doesn't like days like today, he just wants it to be over. I hope his counts can get back up to 750 by next week. I thought FOR SURE he would be well over the 750 mark by now...
The upside is that Cara knew she could get us in for another treatment -- the inhaled antibiotic, Pentamadine. That way we wouldn't have to come back on Wednesday. Mike took Johnny for his treatment, and I stayed and talked to Cara about what to do next. I ALWAYS ask "why?", I don't know why I do it, maybe it's just a natural reaction for me. Cara explained that what happens with Johnny "is that his marrow is so beat up right now from the cancer and chemo, that ANY little virus can knock him down (or just his ANC). Things that normal, healthy people wouldn't even know they have, is devastating to kids with leukemia. It takes their marrow so much longer to recover". I told Cara that we have been letting Johnny skate A LOT, and asked if I should make him rest instead. She said "definitely not. Let him be a kid for as long as he can. As long as his platelets are up, let him do anything he wants. Because after he starts the next phase, he won't feel like doing much at all".
Cara also told me, once Johnny finally starts his treatment, regardless of counts, for the following two weeks he will still get treatment. The next chemos will bring his counts down anyway, but at least they can transfuse platelets and RBC's. Then he will have a scheduled week off to hopefully have his counts recover (I'm planning for at least 3 weeks), once his ANC is back up to 750, he will have the final two weeks of consolidation. I tried to figure out when all of this would be over, and it looks like maybe by mid January. That would be cool.
That's the update.
I also wanted to remind everyone that Joey's birthday is 11/28. He has been really depressed lately because of all of the attention Johnny has been getting. Mike is going to take Joey and some friends to Laser Quest on Saturday for an early celebration. Mike's mom took Joey last night to her house and spent the whole day with him today to try and make him feel special. I thought that was really sweet. It seemed to have perked him up too. He just needs attention, so if you don't mind calling him or sending a card on his birthday, I think that would really cheer him up. I'm not asking for ANYTHING but that for him, he has everything he wants, just a phone call would be cool for him.
Don't forget to donate blood. This time of year is so important, more people are on the roads traveling to "Grandma's house"... You can donate in Johnny's name, or just do it and know that it will go to someone who needs it. You are truly saving a life with every donation -- actually it saves THREE! Think of Johnny if that helps. There is no amount of chemo or any other drug on earth that can help him when his platelets and RBC's are down, just your donation.