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Zac's Adventure, Part 2 This is a slideshow from August, 2010 to December, 2010...slideshow from when he was healthy is at the bottom of page....pics from slideshow from last round with leukemia (2005-2008) can be seen by clicking "view all images" at bottom of this slide show, then click through the rest of this show's pics and they will start.
Journal
April, 2011 Sorry it’s been so long since I updated. I’ve been writing but not getting around to posting. We have made it through the major part of chemo and we are all still here and sane. We’ve had a few bumps in the road, but mostly Zac has been the champ and inspiration he usually is and has carried the rest of us through it. I’ll include the stuff I have written and the most recent stuff at the end…..
Jan, 2011. A new year. As we went to Renown and I talked to a new nurse, telling her we had been coming to the specialty clinic since 2005, I realized that is half of Zac’s life. No wonder he asks to go if it is more than a week between visits – it’s part of his life!
The last 7 weeks have been mostly up. He had a couple of rounds of chemo where he received 3 different chemotherapy medications in one day. His counts dropped after the second one and I think he got a cold too, so his ANC was 200 and he needed blood. He looked like a little walking corpse, so pale with pink sunken eyes and no energy. We were really worried about him but he is doing better now. They dropped half of his last dose of chemo on his last scheduled treatment because of his counts and we start the next phase 2/22/11. We will probably have some delays due to counts but if not we should be done with this 60 day phase around April 20 and then go into maintenance. They have warned us that he will probably be in hospital again but we are hoping he is as strong as the last time and will avoid it.
He has dropped about 28 pounds since this all started. He was a chubba bubba then and really needed to lose weight, but not that much. Every time he has methotrexate (mtx) he is nauseated and food tastes different for about a week. He asks for food but then won’t eat it . After that wears off he is starving and eats like he’s on steroids again. The last week he has been wanting Chili’s three or more times a day and he is eating TWO kid’s meals each time – that’s 18 pieces of chicken and about half the fries each time. That also will equal about $900 a month if he does it for the entire month ($10 a pop x 3 times a day x 30) – but it may be worth it. They have been talking about making him get a feeding tube since he is losing weight. My point, if we get to that point, will be to look at his weight loss and gain and see that he loses after mtx and gains it back each time – not sure why he would need a tube for that. I think there is a chance he may leave a feeding tube in, but I think there is an equal or greater chance that it will get infected and cause huge issues. He will never be able to go without taking a bath or being in water for weeks and he will never leave it alone. He can’t leave a scab on his body and it’s a miracle he hasn’t had infections up to this point. So we will get a small fortune in Chili's, or whatever it takes, to keep him from needing a tube. I just wish I had bought stock in Chili’s (haha). We have been going there on and off for his cravings since 2005 and I equate it to walking into the bar in the Cheers TV show – everyone knows my name………
April, 2011: Zac changed to Round Table pizza for a while. Leave it to my kid to pick the most expensive kind of pizza. And just when I had orderd two larges, as he was eating one large pizza a day, he switched to McDonalds…….so I threw away a pizza and a half. Someday he will learn how to budget….geez
We went to Oakland Children’s Hospital on 3/22. I decided the kid had been cooped up long enough and arranged it so we had 1 hour to hit the Oakland Zoo before we checked in. We drove through a snowstorm starting at 5:00 a.m. and it worked out perfectly. That was one happy boy in his wheelchair. I’ll add pics. We got to the hospital, they lost his paperwork, we had an LP with a great anesthesiologist that just kept him on “milk medicine” for an hour and stayed with him so he stayed asleep and I was thrilled someone finally got what we needed there. He woke up and freaked out as he needed to keep his port accessed and wasn’t used to that. I took two good kicks to the jaw and a pretty serious bite to the arm, but we kept him accessed…..until we got up to the room and I was talking to the doc – this is when he realized we had our guard down and yanked out his access needle. Yes, Zac was smarter than us all once again. They put us in a room with a sweet 2 year old whose family did not speak English who had a bad cough and runny nose. I mentioned it but they had already decided to move us due to Zac’s behaviors. Once we got in a private room where Zac had what he needed and my stress level dropped, it was smooth sailing. We were discharged at 5:00 and after being up all night I wasn’t going to drive home in a snowstorm in the dark on no sleep so we stayed in “our” hotel in Vacaville. This ended up being a two night stay as we started back to Reno the next day only to have the road close. Zac was not disappointed as this meant an extended vacation and a trip to the Sacramento Zoo as we were waiting for the road to open again the next day. After a 7.5 hour drive in which he was perfect and had more patience than I did, we landed home. His counts dropped but he didn’t have to be admitted. They gave him one blood transfusion and, after a second one, we had a hiccup.
For some reason, either the Vincristine leaked out of his port or it was operator error, andthe vincristine went into his chest instead of into his port. This is like battery acid eating the skin from the inside out. He yelled after he got chemo and was yelling when he got home, but they thought, as would I, that it was from the PEG chemo shots he had received in his legs. A chemo burn doesn’t show up until the next day and he did not have the language to tell us it was his port that was burning. The next day he needed a blood transfusion and they saw the burn and ensuing blister. Not good. They are still not sure, and won’t be sure until it heals in at least a month, if his port is corrupted. If it is, however, they would do surgery to remove it and then not replace it, as his chemo from here on out will be once a month and they can use his hands/feet for the veins they need. The blister was three inches long and an inch high and by Saturday had grown to be huge. It popped in his sleep, thank God and he is not touching it. I’m very proud of him for that. He told his tutor that he had a “volcano in his poke that was going to explode” and he wasn’t far off. Then it turned out that on the Friday after his Tuesday blood transfusion, his red blood cell count was too high. So either the lab messed up his initial counts or they gave him too much blood, either way we were rushing down there to get another STAT CBC to find out what was up. His RBC was still 16, very high, but they decided to let us go home, with the promise we would push fluids (they were talking about bleeding some of it off and since we can’t use his port, it would have been through an IV in his hand, so glad we didn’t have to go there.)
So now we are waiting for his counts to come up so he can go into the maintenance phase and for his burn to heal without complications (prayers and good thoughts our way will be needed). We start maintenance next Monday, counts dependent, and that entails a lumbar puncture with chemo for 2 out of every 3 months, steroids for 5 days a month, one oral chemo pill daily and one oral chemo pill weekly for the first year, then the same except for one lumbar puncture every 3 months for two years after that. He will be done when he is 15. We just need to pray in the meantime that he gets no infections and does not get any cancer again. We go into the post treatment for 5 years after that, so he will be monitored until he is 20. Hopefully we can go more than almost 2 years after he turns 15 without another diagnosis this time.
Without the B12 and folic acid, and with him being more than slightly spoiled through all of this, his behavior had gone downhill. We had a long clinic tonight addressing this. He has been hitting, kicking and biting his tutor as well as sometimes us and occasionally a nurse – and having a hard time getting through his programs. He yells a lot and throws things. He stims and bites his hands, which are now bruised and scarred. All of this is hard to get through for anyone. He is fine as long as no one tells him no or puts any expectations on him. We had similar issues last time he had ALL, at about the same time, and had to put him on his Risperdal. We are trying to avoid this but may have no choice until we can get him back on the right supplements. And who knows, it could be so many other things, but we will just keep plugging away at it and hope he doesn’t seriously hurt someone. He has the strength of Hercules, even in his Ethiopian, no muscles, skinny state.
Zac’s adventures:
He loves his fish tank, but, as expected, it is now nicknamed the death tank. We are just not very good at aquariums. For a while we left it without fish and just enjoyed the sound of water going through the filter. He bought these beautiful bug eyed black goldfish, repeatedly, and after many funerals has settled on plain orange goldfish. He calls himself a “scientist” when we test the water. The goldfish are going on their second month. He loves playing scientist and testing the water. We are getting there….
He was in the bathtub and asked me “why did the lion go to the dentist?” I said ‘why”. He thought for a minute and obviously inherited his mom’s trait of not being able to remember the punch line, so he said something that made sense: “to brush his teeth”. I laughed so hard. He had never told a joke before so that was quite a milestone.
He is dying to go somewhere. We were going on a trip to Denver to see the dinosaur museum when he was diagnosed last summer and so he asked me if we could go. I asked him what month he wanted to go in and he said “April”. Not only did he answer the month appropriately he remembered he is done with chemo in April. One smart dude, he is………
I am geographically challenged. My boy is not. He can read a map. We wen t to the Oakland Zoo before Oakland Children’s and I gave him the zoo map. We haven’t been there since 2006. He sat in his souped up wheelchair like a Prince and instructed me on where to go. He would get out of his wheelchair, look in the habitat until he found the animal, get back in his chair ahd direct me to the next exhibit. He had such a great time and it was invigorating for both of us to get to go on a mini vacation.
He fell asleep in my lap in the hospital, like a Great Dane that thinks it is a lap dog. So sweet. I didn’t even care when he woke up and I had a serious lack of circulation in my legs and my arm had fallen asleep. I won’t be able to do this for much longer, he is almost as long as I am.
He is really needing sensory stimulation. He boils and peels eggs, shells peanuts and pops bubble wrap. He bakes a cake every other day or so. This is very calming for him but very fattening for me……
So overall we have come through it with more complications than last time but still in tact. We are slated to start school May 2nd depending on counts and his health. Hopefully he can go back for a few weeks. He is going on another vacation with his Dad and Terri this weekend – he is so ready and I think it will be good for him.
Zo is off to a yearbook conference in Anaheim this week for 3 days. He has been named the CoManaging Editor of the Reno High Yearbook – a great honor and we are very proud of him. He has a great GPA and tries so hard. We are very proud of him.
As for me, I just take each day. I work on not sweating the small stuff, am working on Zen and peace and enjoy every minute with the boys I can. We never know what is going to happen next, so we make sure we stop to smell the roses……
Videos of Zac are on www.youtube.com. Search for any of the following (most recent first, but haven’t posted any in over a year:
Zac skateboard park Feb2;; Zac skate park Feb1 ; Zac waterslides; Zac low dive; Zac high dive; Zac's Halloween 2008; Zac waterfall ride; Zac viking ship; Zac diving dinosaurs; Zac deer safari; Zac treehouse bike
Read Journal History
Hospital Information: Patient Room: 5318 Oakland Children's Hospital
747 52nd Street
Oakland, CA 94609
Links: http://www.featofthecarsonvalley.org
http://www.cancerkids.org other kid's stories
http://www.autism-society.org http://www.autism.com
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