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.

First neutropenic stay June 22-26th, 2011

PICS: My favorite thing about the hospital? Flushing the toilet. I also gave the kids bed rides, talked to my daddy on skype, and tried to play hide n seek, which mommy thought was especially funny since I was hooked up to my IV. The day before I went to the hospital I was at Camp Hobe, that's me swinging with Merin there.

(written by mom June 23rd...We had to go to the hospital Wednesday the 22nd because Tyson was fevering and had a bad infection in his knee. It was the day after we got home from Camp Hobe in Utah which is a camp for kids with cancer and their siblings-the kids had a great time!!! We are so thankful there are so many people willing to volunteer and put that thing together, it was AWESOME and a great way for cancer kids and their siblings to forget about cancer for a while and have something fun to look forward to. When we got to the hospital wednesday his ANC was 600, but quickly dropped to zero (under 100) and stayed there for a few days...they put him on vancoymycin(which requires 2 pokies) and zosyn to get rid of the infection and put mupirocin on his knee...they tried to do a culture of the knee infection but I guess they didn't get any good results...we got to go home Sunday even though it was still zero and continue our antibiotic IV (zosyn) at home with the home health nurse who we love!! So here is what I wrote while we were in the hospital, warning I had a really bad attitude about being there.) ::

facebook status: "Here come the pokies, really wishing I had driven to Primary Childrens :("

Then someone asked if they were having troubles with his port again and I replied: "no troubles with the port this time thank goodness! They just do things differently here and they are still a little lost in the new hospital I guess cause his dinner tray never showed up last night even though I ordered it to come at 6:00. He had cookies and milk for dinner, and ate the rest of the cookie and warm milk this morning cause it took over an hour for his frosted flakes to come up...the doctor who saw him took him off his scheduled chemo pill, I had them call this morning to see if that was right and it wasn't...They lost his lunch and had to make a new one. They have to draw blood twice out of his arm today which I suspect they wouldn't do at PCMC...AND I'm still fuming that the lab threw out his blood Friday just because the nurse didn't label it right~even though her name and cell number were on a sticky note on the bag~they didn't call her and tell her to come label it right, they just threw it out cause that's POLICY!! So he had to get his port accessed twice friday just to get a blood count...just adding that to the list of reasons I hate this place...and LOVE Primary Children's"

update...we are still here at PMC. I know I have mentioned how much I hate it here, and that isn't just the fact that I don't think these guys follow a standard of excellence... just kind of a standard of doing their jobs and going home (I still have a bad taste in my mouth from our experience in the ER, can you tell?) ...it also has a lot to do with the fact that I hate that Tyson has to go through this, that he has to get pokies even though he has a port in to prevent pokies, that my other kids now not only have to be without their dad, but go to bed without their mommy some nights too and that breaks my heart. So I guess I've spent this hospital stay feeling sorry for us and just wishing we could go home instead of trying to make the best of things. I'm slowly working my way out of that mood. Things are looking pretty good I think...his temp tonight in his armpit was 99.1 so I'm crossing my fingers that they aren't counting that as fever. The doc swabbed the pus on his knee and ever since he did that it has improved a ton! I guess he relieved some pressure when he cut it open or something, he said it looks like there might have been a tiny sliver in there. His nurses have been good so I don't completely hate this place...but still mostly hate it. I'm learning that when I come here I just have to be outspoken about things..like when the nurse was flushing his line and was about to leave and I said, 'so you don't need to do heparin?' and she said, 'Yes, I do thank you for reminding me!' Yesterday I should have questioned the doc more about his medicine and required him to check up on it with his oncologist at primary children's right then. And I have learned that you have to badger the food people or your food never shows up...so if for some unfortunate reason I do end up here again I just know I have to watch and question and speak up and it's ok, not ideal but we'll work with it. :) He had a good nurse today(other than the heparin thing), she worked with him on his level and got him to interact with her a little (he usually completely ignores all medical personnell)...he was in a pretty good mood, except when he was getting pokies. Missing my other kiddies :'( thanks for the kind thoughts and prayers.

UPDATE FRIDAY, JUNE 24th. YAY!
The charge nurse came in today and I was able to tell her all of the reasons I am unhappy with this place. She wrote down what I said, and I feel much better getting that off my chest. I am hopeful, one of the things she said to me was that they are aware that they do things differently than Primary Children's and if there is something they can do to improve, or something I like about PCMC that I would like them to do then I should let her know. Of course the main difference I have seen is that Primary Childrens is so thorough and so interested in making it as positive an experience for the child as possible (with as few pokies as possible) that I'm not sure PMC has the means to measure up...but it's nice that they would like to try. :)

Saturday night, June 25th: I sang "happy family" over and over again to Merin tonight over the phone and it broke my heart to hear her crying for her mama on the other end. I was so happy earlier today when I got to see each of my kids as they visited, some with Grandma Porter, and some with Grandma Jerri. It was so good to hug them and talk to them and watch them play with Tyson and ride his bed as he played with the controls (except when Emily got her leg temporarily smashed by the lowering bed). Brenna stayed and hung out for the day and it was fun to hear
about her Camp Hobe experiences. There are two days left of this phase of treatment, called Consolidation and it is such a mild phase of treatment that it was kind of like having a break from cancer. As the steroids of Induction slowly wore off and the effects of the vincristine too since he only had to have it once at the beginning of this phase, we got to see our real Tyson back. His ANC (immunity fighting) numbers were way up and he was interested in playing with cousins again and gradually gaining strength back in his legs, he hardly ever has to crawl (use his hands to get up them) up the stairs and can run and jump on the tramp and play outside and has LOVED swinging on the swings. He has even started to interact with nurses a tiny bit which is huge since he has pretty much ignored EVERYONE except me since day one of his diagnosis. His way of coping with the stress of it all I guess was to shut it all out, something I have recently read about on other cancer kid blogs so isn't unique to him. He still has his moments of crying for a long time over a little thing, and still hugs me tight when we have to walk into a doctors office or hospital, but he has been much happier, healthier, and stronger. I've been reading blogs all evening with tears streaming down my face trying to cope with the sudden shove back into 'cancer' that this recent hospital stay has been. It is comforting to know that other families are going through the same things and some much worse and that they are making it through the pain with positive attitudes. One mom said she was proud to walk around with her bald little cancer fighter and know that the child is one strong and special spirit to have to face this kind of trial. I hope that one day I can have that perspective as right now I mostly feel bad that he has to go through this and wish it wasn't real. I guess that's why the pokies bother me so much because it makes it evident that this is real and that there isn't anything I can do to take away the pain he has to go through. When we got home from Camp Hobe Tuesday night and the kids were happy to just play and be home I realized how much he LOVES to be home and was glad he has a safe happy place to be and to look forward to. We will be SO happy to be home whenever that time actually comes. And in 80ish days we will all be able to be home, I talked to Brady tonight on skype for a couple of hours about how that might be for him to come home in the middle of the worst phase of treatment that A.L.L. kids have, Delayed Intensification. It is strange to plan for what will be such a happy time for our family to be all together again while at the same time dealing with something so hard and stressful. We have no idea right now what to expect and that in itself is hard. When I was talking to the charge nurse and she found out my hubby was in Iraq, her jaw hit the floor and she said how are you doing this? And I shrugged my shoulders and said you just do, what choice do I have? I almost burst into tears right then and there but I held it back and saved it for later. I felt so alone here like I didn't have a voice or any say in what was going on and hated Portneuf Medical Center more and more by the hour. At Primary Children's you are in a ward of the hospital that primarily treats cancer patients so when I am there I feel more safe and like Tyson gets better care because the people who are treating him ALWAYS treat cancer patients and have the expertise and understanding that we need. Talking to the charge nurse and having someone up here actually understand what we were going through was a great comfort and helped me feel better about being here. Tyson had a great time today playing with the toys his aunt Lissa brought and playing with his brother and sisters. He's been having bad dreams on and off ever since he
fell asleep at like 6pm so I hope he sleeps ok the rest of the night. And I had better go shower and get to bed myself so I can handle another FUN day at PMC. His ANC was at zero today so no hopes of it improving soon. :( We'll see what tomorrow brings. Life is still good, really hard, but good...and I need to go read some scriptures and feel better. Good Night....Yikes! as I proof read this I realized it might trigger some 'I need to do something' feelings, it would in me if I was reading it. Rest Assured that you can't take this from us, that it is a part of life and I am sharing it with you not to make you feel sorry for us or feel bad, just letting you see a little bit of the inside view of fighting cancer. Reading other's blogs and things about it has helped me, so maybe someday this will help someone else, who knows. And I really needed a place to write all of this down..so here it is. :) Good Night for real.