It has been a great weekend to say the least...
JOHNNY STARTED MAINTENANCE! OH YEAH BABY! We went to the clinic on Friday, and I thought for sure he would make counts, and this time I was right. His ANC was well over 900, and everything else was well within the normal range. I was literally dancing at the clinic. Even Johnny was happy about starting maintenance. Okay, he wasn't happy about he spinal tap, but he knew that after this one, it would only have to be every 90 days -- FOUR TIMES A YEAR -- WOO--HOO! Whoever thought I would "woo-hoo" spinal taps, but I AM! Right before he did the LP, I could see a tear in his eye, he was scared. As he closed his eyes, I saw it run down his little face. I felt so bad for him. But it is over in about 5 minutes, and we were home by 2pm. He also gets a dose of Vincristine every four weeks when we have our doctors visits. Actually we have to go twice a month, once just for blood work (to make sure nothing comes back), and once for an office visit.
Johnny's big thing now is eating his weight in Wendy's chicken nuggets. I'm not kidding either. The kid can eat in one (long) sitting, five packs of nuggets. That is 25 nuggets! No sauce, just ketchup. He had been doing it all week, and on Saturday he wanted to show Mike how he could, but this time he only could eat 15.
Anyway, Back to Friday. We get home (my parents house), and all he wants to do is skate. I thought he looked good, so I let him. He skated until the sun went down. He kept falling, but always had a smile on his face. He asked me why he was falling so much, and I told him " um..., could be all the CHEMO you had today!". He said "Naahh...I just need more practice. I'm not going to stop until I can nail this one trick..." I asked him what keeps him going and he told me "SUGAR!". I asked him why he skates so much, he shrugged and told me "I have to, I just have to".
On Saturday, Johnny and I had to go do his Reconciliation retreat (he makes his First Communion in May). He did it no problem. Usually, the day after LP's, he sleeps until 1pm. Not this time. He ate his 15 nuggets and skated until it was dark again. The kid is such an inspiration. AND, he is his old Johnny-self again. I thought that a few weeks after each treatment, "he was himself", but man was I wrong. He is the non-stop kid I knew a LONG time ago. As his PoPo would say, "full of piss and vinegar'. But that is a good thing -- trust me. I missed his humor, his restlessness, his constant hugs, and his non-stop movement.
Johnny is doing well. Everyone is asking about his boards. I'm not sure when they will be out, but as soon as I hear something, I will let you know.
WE ARE BACK IN OUR HOUSE! OH YEAH BABY! It's almost back to normal, they just need to repaper the kitchen, and then it will be finished! We stayed at my parents this weekend, and when we stopped by on Saturday afternoon, it was done -- the construction workers were gone and everything. So I immediately started cleaning. I just finished not too long ago. It feels so good to be together again. I actually counted how many days we were out of the house, and it was 55! DANG! It was a long time! The only thing is, I brought home a bunch of Christmas gifts that I had for some friends and relatives, but can't remember what the heck I did with them. It was a bunch too. I probably packed them up with the decorations or something... I guess I will find them next year!
And last but not least -- Mike got his truck repaired (needed a new engine or something...), it was broke MONTHS ago, but we just now had it repaired. Now we can get our lives back to "normal" -- whatever that means! Aaahhh....
Johnny's Wish trip to O'ahu is only about 4 weeks away! We actaully leave on Sophie's birthday (Feb 19), and we will be gone a whole week! OH YEAH!
I will update more later -- Love to all!
Wednesday, January 18, 2006
Johnny had is official clinic visit to start his maintenance phase of treatment. His ANC has to be at 750, he was at 650. Which I think is pretty good compared to last week of 200. I was excited. We had Dr. Mahoney today (his actual doctor), when he came in, and the way he was talking to me, I thought for sure he was just going to write over the 6 to make it a 7. But he didn't. He said that it should be at 750 in a day or so. Monday at the latest. Of course, I pushed for Friday. I guess the reason I push for earlier dates is because, every day that passes, could mean potential infection.
I also asked about what it will be like on maintenance and of course, a relapse. Dr. Mahoney told me to stop having "stinky thoughts" about anything ever coming back. He has a good feeling about Johnny, and doesn't see any future problems. BUT, if it does happen, it usually happens with in the first 12-18 months after consolidation (which he just finished). He also told me that with each year that passes, the likelihood gets less and less that anything will show up. The survival rate for ALL like Johnny's is 80%, if he has a relapse, the numbers drop to 50%. But all of the "markers" the doctor's look for when kids are first diagnosed to help them with their treatment, look good. Like, his white blood cells on the first day (5/26) were less than 20,000, and there were some other cells they looked at that told them "this kid is going to be okay". Also, there is a test called Minimal Residual Disease (MRD), and his test came back negative. This test takes cells from his marrow, to check if there are teeny tiny leukemia cells left. Things they wouldn't pick up at the clinic. It took over 6 weeks for the results to come back, but luckily, Johnny was "clean".
I also asked about the two other "weird acronym" tests he had done (and I thought the airline industry was acronym crazy)... I think I mentioned them before the TPMT and MTHFR test, both were done last summer. They were to determine how he metabolizes his oral meds. Two really important meds he has to take for the next three years. For the TPMT test (which tells if he is sensitive to 6MP), was negative. --- uh, okay, that's good. The MTHFR test came back positive, this determines if he is sensitive to methotrexate. -- um, it's not really good or bad. Actually, Dr. Mahoney said that doctors still aren't sure what to do with either result for any kid. The methotrexate causes mouth sores (mucusitis), REALLY bad in Johnny. It also kept his counts way to low this summer. BUT, Dr. Mahoney also said, Johnny was in a really bad place when he was having problems. His marrow just couldn't recover, and it was just getting beat up week after week. Now, his marrow is much stronger and will better tolerate both drugs -- we hope.
Although Johnny couldn't get treatment, it was a good visit. He gained 4 pounds! Must be all of the cheetos...
On Tuesday, Mike and I gave a testimonial for the Gulf Coast Regional Blood Center and CenterPoint Energy. It was pretty fun. We just told our story, and talked about the importance of being a Commit For Life donor. I cried as I told the story -- I'm such a wimp. Mike did great, picking up where I left off. I didn't break out in hives or anything either -- there must have been 75+ attendees, PLUS the President/CEO, Bill Teague of the Blood Center, AND Pres/CEO of CenterPoint Energy, David McClananhan. ...no pressure... uh, yeah...
Since we were half way to Houston, we decided to go check out the house. It wasn't too bad. They are going to start work on the rebuild tomorrow! It was nice being a family again, we went out to dinner and had a very nice evening. The boys were so happy to see each other. I know that Johnny is feeling SO much better -- he talked the ENTIRE way home. Yes, an hour and a half. Just going from one topic to another, with such enthusiasm, it was great. I haven't seen THAT Johnny in MONTHS.
He RARELY talks about his treatment or thoughts about everything, but he did last night. He talked about each vein that was poked and which ones are "juicy", as he calls it. He talked about it at great length, I didn't have a chance to get a word in edgewise. He would ask me a question, and wouldn't give me time to answer it. The strangest moment/thought was when we were going over the causeway. He said, "wouldn't be weird if instead of driving on a road, it was a 3-D map, and we could watch all of the cars, trucks and vans drive around? Each would be a different shape and have a C,T, or V on it to tell what kind of vehicle it is. There wouldn't be a bridge, just a big oval with the letter B on it". It took me a minute to figure out the C for car and T for truck was, but I had to ask what's with the big oval with the letter B? "BOAT! And a bunch of circles with P's". I gave him a look like "what?!?!", and he said "FOR THE PEOPLE!". I had my Johnny back. I was so glad to see him again, smiling, being creative, laughing.
I thought to myself, even though it doesn't look like him -- no hair, eye lashes, or brows, he's back. I had forgotten what he was really like. The ride home wasn't long enough, I wanted to listen to him for another hour and a half. Then I felt greedy too, I wanted MY Johnny back with hair, eyelashes and brows. Soon, he will have his long, floppy hair he loves so much. Some of Johnny's "peeps" were over and I was showing them some photos of something, when one of them saw a shot of Johnny with hair. His reaction was, "awe, dude! NO WAY!" It was strange to think that some people didn't know him when he had hair.
Anyway, now I am rambling, I better get to bed. I will write more later!
Monday, January 09, 2006
This is in the Gulf Coast Regional Blood Center Calendar
This is the card that will be shipped along with Johnny's board
This is a picture of Johnny on the Deluxe Website (DLXSF.com)
Gosh, I did realize how long it had been since my last post. Mike and Johnny came home the Monday after New Year's Day, and Johnny slept for about 3 days. He wasn't himself for quite a few days, but he slowly came back to life. The doctors still aren't sure what he had, but most likely just a cold. I actually found out two days before Johnny went into the hospital that one of Sophie's friends here was at the house while she had a 102.5 fever! ...uh, yeah.... thanks. Thanks for the 5 days in the hospital. Some people just don't get it.
I had called this weekend to explain to the mom why Sophie couldn't play with her daughter, that it wasn't about her daughter, it was about GERMS in general, and even one child's runny nose will cause Johnny a trip to the hospital. She wouldn't listen, she kept interrupting me saying "yeah, yeah, I know. This is just such and inconvenience to my kids..." I tried to explain to her, that Johnny doesn't go to school, we couldn't be with our families for Christmas, and I had to take Sophie out of her Mothers-day-Out program, because little kids automatically spread germs -- it just happens, it's pretty much unavoidable. All I got was, "yeah, yeah, I know. It's just so hard on my kids, it's hard for them to understand... you know Johnny's in front of my house right now, I guess I just have to keep my kids in our house, while he is outside playing..." I was so mad I was shaking. I wanted to say, "Hey, it's your rude, snot-nosed-kid that doesn't wash her hands that got Johnny sick -- keep her away." But I didn't. I just told her that I would do my best to keep Johnny in the driveway, and that in a few months, hopefully we won't have to worry as much about germs as we do now. No matter what I would have said, she wouldn't have understood. Anyone who lets their child out in 50 degree weather, in shorts, short sleeved shirts and no shoes -- oh yeah -- and a 102.5 fever, will never get it. But I'm not bitter...
---- whew ----
Last Friday's clinic visit was good. Johnny just had a finger stick to get his counts, and had a follow-up visit after being released on Monday. Our questions were: When can Johnny get his port taken out, and can we wait on his big (quarterly) treatment in February until after we get back from Oahu? Dr. Mahoney said that as soon as Johnny's counts are up enough (his platelets have to be 100,000 on their own (no transfusions), and his ANC has to be 1,000), he can have surgery to remove his port! Last week his platelets were 60, and his ANC was 110. So it could be awhile! But who knows, it could be in two weeks.
I also asked if we would still have the germ/hospital visits to worry about during maintenance. Once Johnny's body recovers from this last round of intensive chemo, and he is well into maintenance, he should be fine. Although, ANYTIME during maintenance he has a fever of +101, he still has to come to the hospital. His body won't be full of hard core chemo in a few more weeks, then his immune system will be better equipped to fight infection. About the treatment before his trip next month, it's a wait-and-see type of thing.
Our next visit is on Wednesday of this week, just to check his counts. As long as he is doing well, and his counts are up, then on Thursday, Jan 18, he can officially start maintenance! WOO-HOO! On Thursday he will get an LP (spinal tap), a shot of Vincristine, and then some oral stuff at home. He will only have to get LP's every 90 days after that!!!
Some really special stuff has been happening to Johnny lately though. Mike told you about his skateboard -- so awesome. Johnny is on the Deluxe webpage, (front page) right now. Go to DLXSF.com and you will see their newest "pro" announced. Pretty cool. And the Gulf Coast Regional Blood Center (GCRBC)is still running his commercial too (now we are talking, before there was a voice-over, Mike finally saw it tonight). The picture at the top is of us in the GCRBC calendar, we're May. And in a few months, Johnny's wish comes true to go to Oahu! Of course, I would trade ALL of this and much, much, more to have never have had Johnny go through ANY of this. But hey, this stuff makes some days more bearable for the little guy.
Hopefully, once we come back from our trip to Oahu, I can take Johnny out to see Mike's dad in Orange County. Mike should have enough tickets by then, and I will be able to take Sophie and Joey with me too. We will have to see! Johnny really wants to go to California. It's been over a year since his last visit, and that's the longest he has ever gone in his life!
The mold remediation is almost done on the house. The environmental guy came out today to test everything, and if the tests come back good, then the rebuild will start this week! Mike said that it doesn't look too bad either. A lot of what we thought might have to be taken out due to mold, is still there (which means it wasn't contaminated). I think I told you this, but it wasn't the black TOXIC mold that everyone is so afraid of. It is just mold that happened to be black. We are still going to play it safe and stay at the beach house until all of the work is done. Update more later!
Sunday, January 01, 2006
not feeling too well...
one of the MANY transfusions Johnny has received
Mike came up to the hospital last night so we could "celebrate" 2006, and switch out for a day or so.
Johnny woke up on Thursday morning with a fever of 103.1, and a cough. I knew we would be in for a few days, so I packed our bags and headed to the clinic. His fever was as high as 103.6, his red blood cells were low as well as all of his other counts. Normal for a boy his age is 11.0-15.0, Johnny's red blood cells were 5.0. His platelets were 40, normal range is
150-250, and his ANC was 10 - normal is at least 1,500.
Laying in the clinic triage room with lousy counts and a fever so high his checks were flushed, the doctor asked him how he was doing and he said fine. She laughed. Luckily she knows how stoic he can be, and knew that he probably felt like crap, but was too weak to say so. We were able to get a room by 2pm, Mike met us up there and had our last family get together for 2005. Mike took Joey and Sophie back down to Galveston, and I stayed with Johnny until tonight.
The doctors started Johnny on three different types of antibiotics that are given every 6-8 hours. He also received 3 transfusions. They checked for everything, pneumonia, RSV, the flu, and a bunch of other bacterial infections that could kill him, but luckily didn't find anything. Since there are a bunch of viruses, they check for the ones that are potentially deadly to kids with cancer, but found nothing. It's probably just the run-of-the-mill cold.
I think he is starting to feel better, he actually got dressed yesterday, and we went for a walk outside.
He did have problems with his port from the get go. In the clinic the nurses couldn't draw blood from his port, but could get fluids in. They fooled with it for a minute or so, but had more pressing things to start on him. They told the hospital staff about it, and thought they could work on it for awhile. Turns out it is a blood clot. It's a natural reaction to a foreign object in the body, and so at the end of his port there was a blood clot. We did a bunch of xrays to make sure the port didn't float off, or move -- luckily it was perfectly positioned, just covered up. I guess the way it happens is that the clots form at the end of the port, and when fluids are pushed through, the clot opens up, then when you try to get blood out, the suction in the other direction causes the clot to cover the end and essentially seal it off. It's happened before, but we were always able to get a blood return.
The only way to get rid of the clot is to push a medicine that is given to stroke/heart attack victims called Altiplace (I am totally misspelling this) or TPA. It sits in the port for a few hours, and then the nurse tries to get a blood return from the port. If it works, great, if it doesn't -- then the port has to be removed. But we couldn't do the TPA until Johnny's fever was under control, because if the TPA worked and there was an infection in the blood clot, it would cause the bacteria to break up and go all over and make him worse. We didn't want THAT, so we waited for him to break his fever. We did that and then was able to get this port working! It is only a temporary fix though. It will clot again...
We asked our Dr. This morning how soon Johnny could get his port out, and she said as soon as his counts were good! AWESOME! THAT made Johnny smile. Hopefully he will have the surgery and recover before our trip to Hawaii! Even better news! We thought that Mike and Johnny would be home tonight, but they want him to stay one more night for another transfusion in the morning, and to check and see if they can figure out why he is burning through so much blood.
His ANC was up to 110. I know it's still WAY below normal, but it jumped from 10 the day before. So that is good for Johnny! I will update more tomorrow! Happy New Year!