Pioneer Day Parade

This post has nothing to do with cancer and we LOVE it! (Okay well maybe a little on the 'c' word, there's really no getting away from it is there?) Ty is feeling great! He didn't eat much the day of his treatment and for a couple of days after but now he is feeling great, eating normal, has lots of energy, and is in a great mood! We know the whole phase won't be so great since each dose (every ten days) is higher. ...so we are taking advantage of the good times.

We walked with our fellow military families in the Pioneer Day Parade. It was so much fun to get out of the house and be around people!! Tyson even got out of the wagon a couple of times and walked/ran with us. The support from the crowd was overwhelming with most of them standing and clapping and yelling 'thank you' as we walked by, I was not expecting that and it felt really good to know people still support our troops and their families. Proud to be an American!! and love this wonderful community full of GOOD people!

Phase3 Day1, Relay for Life, Cherry Hill

This weekend was my mom's family reunion...my ANC on Thursday was 330, way too low to go to a family reunion at the lake and camping at Cherry Hill with lots of little cousins. We were bummed. While the big kids were gone to the reunion with Grandma and Grandpa, Gramma Kitty Kat and Erin brought me my own camping trip, complete with tent to play in, fishing in the tub, dodge ball vests, and a mini fire for roasting marshmallows.

I went to Relay for Life so I could get a cool survivor tshirt. Michelle met us there and gave me my IV antibiotics. She held up my IV for me while I ran around Century HS looking at everything. I had a great time playing with her son. Gramma kitty kat was there and Erin, Eden, Jaxon and even my uncle policeman Jordan came to see me there. I won a giant pink blanket at the survivor raffle that Merin immediately claimed. The Relay for Life program was in the hot sun and lasted way too long. I took my mask off cause it was soooo hot. I fell asleep and we went home before I got to do the Survivor Lap. Oh well, mom still got a great shot of me walking on the track.

Then on Monday we were all shocked to find out my ANC was 1800!! That means we finally started round three of chemo on Tuesday July 19th. (Interim Maintenance I) I was in a good mood... I haven't had pokies for a long time so I am not as apprehensive about medical places. (and mom promised no pokies this time, yep I asked) There I am at clinic getting my blood pressure checked. I wieghed 15.1 kg, just a tad under my diagnosis day weight. I got two types of chemo today and some zofran for my tummy. My nurse was cool, he even got me a dressing that wasn't tegaderm so it came off better.

Right now (July 20) the chemo doesn't affect me too much, I'm not quite as energetic and happy as I have been and I don't want to eat, all I want is chocolate milk (ovaltine) but at least I'm still having something. We will go in every ten days for this phase (8wks long) and each time depending on my numbers they will up my doses of chemo.

As soon as I found out my numbers were up I started talking nonstop about the dragon slides at Cherry Hill. Mom thought it would be a good idea to take us after my treatment since we don't know when my numbers will be that good again. :) I had a BLAST!! Mom took me down the dragon slides lots and lots of times cause that is my favorite. We also went in the lazy river, the big pool, and the kiddie pool with a yellow slide that I love. (I took my toy 'submarine' down the yellow slide with me) We were lucky cause it wasn't crowded at all, sometimes I was the only one in the kiddie pool. I wore a hat and had lots and lots of sunscreen on cause my chemo makes me extra sensitive to the sun. My Grandma drove with us and watched the kids while I was at PCMC, and watched Merin while we partied at Cherry Hill. It's a good thing she planned to come with us cause when we were about to leave mom's car wouldn't start and so we took hers while Grandpa fixed ours. What would life be like without Grandmas and Grandpas???

Home Sweet Home

I just burned both feet all the way off when I ran across the hot lava.  Luckily for me Tyson used his super x-ray power to put them back on. He also has super xray feet so his don't get burned on the lava.  We got to come home from the hospital on Thursday (July 7) and are loving every minute of it!  Ty is still on ceftazadime IV antibiotic three times a day so we get to see Michelle a lot (his home health nurse), and she brings him a giant Reeses peanut butter cup quite often which he totally loves!!  She has noticed that a lot of her little cancer patients love them..must be something about the chemo or the protein in them or something that makes the kids crave them.

So other than a sticky dressing change which has to be done once a week when his port is accessed (whoever invented Tegaderm is related to the devil), Ty is doing really well and is starting to recover from Consolidation (phase 2).  The 6MP (mercaptopurine) which he took by mouth every day in that phase really did a number on his blood counts after a couple of weeks, and took a couple of weeks to wear off.  He's had two blood transfusions and one platelet transfusion during this phase and his ANC (germ fighting power) has dipped to zero and stayed there a few days a couple of times.  I'm sure the infection in his knee hasn't helped with that, the oncologist said that is probably why his ANC is still too low to start the next phase. 

So here we wait!  Happy that he gets a break from the nasty 'medicines' they call chemo.  One of the hardest parts of the whole cancer thing is that you have to treat your kid with poison. 

 Other than the hospital stays, this phase has been pretty mild and we are enjoying the break from chemo that his low ANC has caused.  Now we are ready for it to go way way up in the next few days so we can go to at least part of the family reunion this weekend at Cherry Hill. His next CBC is Thursday and will determine whether or not it will be safe for him to go.  If not Merin and I will stay home with him.  My mom and dad are going to take the big kids down with them in our camper but every time I mention it to Ryan he starts to cry.  It is really hard for him to be away from me overnight so the past couple of hospital stays have really taken their toll on him.  He really wants to go...just really wants me to be there too.  It is interesting how much this affects the whole family, not just the cancer patient. They are a vital part of his treatment and recovery.

July 6, 2011 still at hospital

Still here! They did a culture of his knee goo and whatever they grew is too unusual for this lab to know what it is so they are sending it to SLC. So we should know in a couple of days what dastardly organism has caused so much trouble. His ANC is still zero, and when i say zero I mean it...his neutrophils don't even show up on the CBC. They put him on zosyn when we got here and that wasn't doing anything so they switched to ceftazidime. They started out putting neosporin on his knee ?? duh that's not going to help I was thinking and when I told his home health nurse she said 'when they do stuff like that tell them-that's not going to do anything and ask for something else' I'm learning to be more outspoken about stuff, but it's wierd cause you start out something like this assuming that the medical profession is always on top of things and I am learning quickly that they aren't. Hopefully some time today his knee will show improvement. If it does they might let us go home tomorrow even if his neutrophils (germ fighting white blood cells) haven't risen and we'll just continue his meds at home with his home health nurse. Emily(5) will be so excited cause she's been writing notes to the nurse's daughter who has curly hair like her and her daughter wrote her a note back. The home health nurse came up yesterday and delivered a bag of goodies from another cancer patient she sees. That was a really nice surprise and nice to be in touch with another cancer mom from the area. Her boy is 4 and has ewings sarcoma.

Ty had a good day yesterday, he was happy and playing and his Grandma Kitty Kat brought him some toys and played with him for a while. His brother Ryan(8) came up and spent a while with us too, he has a really hard time when mama isn't home. Merin(18mos) came to see us a couple of times and we briefly saw Brooke(10) and Brenna(13) when they came to pick up Ryan. Grandpa came up last night and played with Ty while I went home for a few. I got to put in Ty's laundry and play Apples to Apples jr with the kids and duck duck goose. We had a great time, when Merin figured out what we were doing she would go around the circle saying 'guck guck guck' until someone talked her into saying goose and then chase her around the circle, it was really cute. You would be amazed at how fun duck duck goose can be, it's not just for preschoolers! :)

I guess while I was gone he was bouncing off the walls, jumping on the bed when the nurse was trying to do his vitals and stuff. I'm not sure if being familiar with the nurses is necessarily a good thing now cause this morning he hid from her under his blanket and kept turning and laughing when she tried to put the stethescope on him.

Neutropenic again!! July 3rd,4th... 2011

Here we sit on the 4th of July at the hospital. Tyson fevered yesterday and had a ton of bruises and petechiae (little red dots) from having super low platelets and was sporting an infection in the other knee! We left the hospital last Sunday afternoon and Michelle our awesome home health nurse was coming three times a day to give him IV antibiotics through his port, which we just kept accessed all week. Ty felt great and played and was happy and has started to interact with Michelle (he used to ignore all medical personnel) and wants to administer his meds himself, put the stethascope in position himself, and take his own temp. His nurse said little kids like this have so little control over what is happening that when they want to do everything themselves it gives them a feeling of having control over something. I'm glad he understands what's going on and is ok with it. They did a CBC a couple of times during the week and we were surprised to find out it was 300 on Friday. (it had been below 100 for a few days) His platelets were only 19, but they called PCMC and they said since he looks like he is recovering, take him off the antibiotic and put a mask on and go to the movie :) We did just that and went to Cars 2. We took clorox wipes and hand sanitizer with us. Saturday we had a barbeque at Grandma and Grandpa's house and watched the uncles light some fireworks, and I got some candy bags ready so the kids wouldn't pick up candy at the parade (too much germs with a low ANC). I'm glad we did all of that-Ty has been perfectly ok today to just eat his candy instead of going to the parade, and we got to enjoy some fireworks before we ended up in here. This stay in the hospital has been great, Ty has been in a good mood, I have a better attitude, and I brought some activities for Ty to do so he has had fun. I am guessing that whatever he was fighting last time we were here didn't completely leave so being off the antibiotics for a day made it come back. Michelle told me to text her if I had any problems at all up here, which I haven't, but she works here and knows a lot of people so she's watching my back :) Did I mention that we love her? Tyson hated getting accessed until she taught him that it was a magic sticker and showed it to him after she deaccessed him (you can't see the needle after it's out) and had him touch it and stuff and now he is ok with it. She is also really nice to the other kids who gather around whenever she is there cause she is so fun and friendly. Sooo I miss the other kids, but I know they are having fun with grandmas and grandpa and I have had a chance to create this blog. I am so thankful for modern medicine and for the research and knowledge they have gained over the last few years on ALL. When I was a kid a lot more peole died of Leukemia than do now. Thanks to all for the prayers and well wishes! We are doing great! and are sooo blessed and thankful. Ty's ANC is still zero and they want to see his marrow show some signs of building back up before we can go so we don't know how long we will be here. Ty still has a fever but feels much better after getting platelets and blood in the night.

Happy 4th of July!! PROUD TO BE AN AMERICAN and proud of my hubby who sacrifices so much for us.