It is amazing how different Tyson is! If you tried to interact with him in the last year 1/2 you were most likely ignored. Now that he feels a lot better he is talkative and happy and wants to be involved in everything. There is a considerable difference in his appetite and demeanor now that he is off the voriconazole (antifungal), he will even talk to other adults and is constantly out playing with somebody.
I had lots of help painting the new boys room for Ryan and Tyson
Our local town has a parade and festival every August...yep, I let him get candy off the road.
Building a truck at the Home Depot booth at the festival
Daddy's home from his two week Annual Training so we went to a Army family picnic to celebrate...the kids found a cool tree that was low enough to climb on...tanks are fun to climb on too
I think he has even gained a little weight since he's been off the antifungal, he eats whole peanut butter sandwiches! He's been a real fussy eater since he was diagnosed, mostly wanting bland food and never eating a whole bunch in one sitting (except when he's on steroids of course) just little nibbles here and there. And look!!! His 3T pants are finally too short!! Yahooo!
I gathered them all up and sold them (along with a ton of other stuff) in our benefit yard sale for kids with cancer. It was A LOT of work! Sorting through all of the stuff and getting it organized took the entire day Thursday and then some, but we had a great turnout on Friday and even a few more customers on Saturday. It was a great success and we will do another one in September so if you were planning to donate something and didn't get a chance to bring it over you can still bring it to me. THANK YOU to everyone who helped, donated, and bought stuff!! Our next door neighbor even did her own yardsale and donated what she made to us. We donated some of our proceeds to our cancer buddy Boo, and the rest of what we made will go to our CureSearch Walk. We are so excited to be a part of helping move research forward and we thank you so much for being a part of it too!!
Spaceship ride...this picture gets to be first because his CT scan showed that his lungs are almost all the way clear which means he is done with voriconazole!! Yay! There are a few reasons to celebrate...the first one of course is that the medicine worked and cleared his lung fungus. (Mostly, she said there was one little spot left but they aren't worried about it too much I guess) Granted it took longer than we thought it would but we are grateful it worked.
The side effects of the antifungal weren't horrendous but they were annoying enough that we are glad to be rid of it. The sensitivity to the sun being #1, bye bye red skin and random blisters. Picking up a $900 bottle of antifungal every 6 days that has to be pre-ordered because no pharmacy in town carries it was kind of a pain...(but makes us extra extra thankful for good insurance, a good pharmacy who bent over backward trying to find him some when their supplier was out, and a $12 copay). His dosage worried me a little too, it seemed to be really high, 240mg (6ml) twice a day and the bottle came with a 5ml dose syringe, but that is the dose he needed to get the job done.
I won't have to greet him each morning with his dose and hear "I'm hungry" (it was supposed to be given on an empty stomach twice a day, no food an hour before or after... have you ever noticed that telling someone they can't have food makes them want it even more?..the ironic thing about that is after he had his dose he wasn't really hungry anymore for a while, I think it made him feel kind of sick, and made him throw up occasionally)
That was probably way more details about voriconazole than anybody wanted to read, but I'm quickly learning how forgetful I am so I like to write everything down,..someday we will read this again and remember all of the reasons we didn't like Vfend. (and the one reason we did like it)
I am hoping that his appetite will increase a little as well, his weight is 15.9kg (35lbs), same as last month I think so he didn't gain any weight and he is 96cm tall. Just putting that in there while I'm remembering. He was 92cm tall at diagnosis...and weighed 16.9kg (37lbs).
Throwing his coins in at the entrance
Stepping on his bug he made in the waiting room, he was bouncing off the walls today! We missed daddy's video game distraction techniques a lot!
He did get to play a little bit of gamecube, but not much cause he only needed an infusion of vincristine, which takes less than 15 minutes.
Holding his IV spot so it will stop bleeding while the nurse gets the bandaid
The giant 'fish tank' I mentioned, you can see the fish from inside the elevators...this is the view from the other side.
In his own little lair on the way home, all set with his drinks, video, blanky in the window to block the sun and snacks on the side. He talked and talked all the way home, asking if he will have a beard when he is old and how old he will be when he is a dad, if Jesus is strong enough to lift a car, if he could buy some skittles for his cousin, what makes cars old, wondering how people fall in love and then giggling and saying 'kissing them?' under his breath when I said you find someone who you want to be with all the time and want to hug them and kiss them, 'tricking' me that he wanted to only watch a black screen and then secretly turning pink panther back on, commenting that his cousin could get sick like him cause he's 4 too, and wondering if he could have both pokie prizes even though he only got one pokie, (I told him yes of course since he held really still for the IV ninjas, they were impressed).
He also asked the other day if our new (to us) car can go even faster than the 'bazuki' (our 1992 suzuki swift that is falling apart at the seams, it is old, loud, and stickshift which must make it sound fast to a kid) he is shocked that anything could be as cool and fast as the bazuki.
It was a good visit all around!
No steroids again : ) He will probably start back up on steroids at his October appointment, we hate those things, but we are glad he can go back on them eventually because they should increase his chances of not relapsing. (he has been off of them because fungal infections love steroids) His chemo pill dosage stays the same which means we only have to do 1/2 6mp (another that should be taken on an empty stomach and with no milk) every other night, his one MTX pill on Thursdays and dapsone and colace every night. So Easy!! He is also cleared (as long as his counts stay where they are) to go camping and to start tumbling back up this fall. He will get a new port placed in his chest in October the same time he gets his back poke so that will be in the OR instead of sedation. I'm glad we have a couple of months before that happens cause he will be sore while the insertion sites heal and even though it is so routine, it scares me a little now that we've had problems with one.
Counts today looked great! WBC 3.2, RBC 4.36, HGB 12.8, HCT 38.5, PLTS 247, ANC 1300. White blood count and ANC are just a little below the 'normal' range which is good, they are supposed to be suppressed a little. I'm sure if they go much higher than that we will be looking at increased chemo pill doses. But for now we are good!
It occurred to me as I watched Ty sliding down this giant slip-n-slide that getting strep in his picc line in May was a blessing in disguise. (He had to have it pulled out because of the strep) His summer would have been full of dressing changes, line care, baths with a saran wrapped arm, and water free activities. His activities would have been much more restricted if he still had a picc line in his arm, and the alternative (IV) has actually been better for him. Getting a pokie (normal IV) once or twice a month is much better than weekly dressing changes. He even looks forward to it a little bit now, he picked out his own pokie prize at the store the other day and is anxiously awaiting his trip to horsey doctor (PCMC) so he can finally have it. : ) We are hoping that he will get a port (central line that is under the skin unless accessed) put back in maybe in September if his lung fungus is cleared up at this next appointment. I've heard, but haven't confirmed with a doc, that they like the central line in because chemo burns the veins if it is administered repeatedly through them. So even though he mostly only needs an IV once a month now, a port will still be his best option so his veins don't get too damaged or whatever it does to them...I don't really know the correct terminology. And of course if he does end up in the hospital again, having a port in will certainly be better than IV's. We sure missed his port when he was hospitalized in April/May. But yahoo for an infected picc line!
I'm starting to sound like a parrot when I say he is mostly like a 'normal' kid now. It is hard for me to wrap my brain around it, and it is hard to explain how different it is to not be in survival mode anymore. Instead of keeping the laundry done in case Ty fevers and we end up in the hospital, I'm just doing the laundry cause it needs to be done. Instead of keeping two bags full of clothes, toiletries, and hospital activities in the car at all times, I have one bag in there that I keep getting stuff out of cause it has been so long since he has been hospitalized. Instead of constantly cleaning, sanitizing, washing hands, worrying about low blood counts, and possible fever, the house gets pretty messy, Ty gets dirty, plays with neighbor kids and cousins, and I forget to wash his hands sometimes before he eats! Yikes! Technically he does not have the immune system of a normal person, it is still suppressed a little bit, but when you are so careful for so long because he is in the danger zone, when he gets out of the danger zone and stays there for over 2 months it is easy to relax a little. It sort of feels like you are holding your breath...the longer we go with steady counts the less we are holding our breath. I still feel his head for fever out of habit in the morning and at night, and I still look him over for bruises and pale skin when he says 'momma I want you' which is his way of saying he doesn't feel 100%. Thoughts of what if's still creep in there sometimes, what if his counts tank again, what if he relapses, what if he ends up needing a bone marrow transplant, but I think about that stuff way less now and am slowly but surely getting myself in a better place as far as getting out of survival cancer rules your life mode and figuring out a new normal where medical stuff and being sanitary is a part of life, but doesn't rule it anymore.
There have been so many little blessings and blessings in disguise over the past year and a half. I wish my brain could remember them all so I could list a few more. I was reading back in April and May and thought perhaps that infection on his lip was a blessing in disguise because it may have been the thing that caused the fever that got us to the hospital in time to get a positive yeast culture back and get his infected port out before it caused more serious problems than it did. That had the potential to be a lot more serious than it was so I'm grateful for the way it all turned out, and very grateful for all of the medical people who cared for him in Pocatello and Utah. The doctors, nurses, cleaning staff, lab technicians, pharmacy people, ambulance guys, really, there were so many people who did everything right for him that made it possible to get that port out and get him recovered. It makes me nervous to have another port put in. Ugh, surgery, even though it is a simple procedure it still makes me nervous to send my little guy off with the anesthesiologist. Being away from Primary Children's for a month at a time sort of makes it harder to go back there, last time we were there I stood at those elevators in front of the giant 'fish tank' and all of those feelings of being there came back to me and I dreaded going up those elevators and hated being there. Not that it is a bad place, cause it isn't, it is an AWESOME hospital with awesome people who work there, but nobody wants to find out their own child needs to be treated there. So for a moment I wanted to run out and never return and pretend we had never been there. Ha! that sounds so dramatic, but it is how I felt at the time. Hopefully when we go Tuesday it will be uneventful. We are hoping and praying that his lung fungus has finally cleared up and that everything else is normal. He still has a cough, not sure what that is about. We have been so so blessed through all of this that sometimes I feel guilty and wonder how we got so lucky!!
I need to read back through all of my posts and remember the lessons I've learned and the blessings we have received so I don't start taking things for granted now that things have calmed down a little with Ty. I hope I don't seem ungrateful to all of the people who have helped us in so many ways big and small. I know I've missed writing thank you notes to many of you and I feel so indebted to so many people that the only way I know how to pay you all back is to pay it forward somehow. That is probably one of the reasons I am so passionate about finding ways to help other kids and families going through similar battles, I hope in some way our family can do for them what many of you have done for and are doing for us.
Whew! this was going to be a really short post about Ty's ability to play in the water and it looks like I went on and on forever. I'll update Tuesday after we get home from his clinic appointment. Bye for now, and thank you.