Tyson's Brave Battalion

Tyson's Brave Battalion
Things don't go wrong and break your heart so you can become bitter and give up. They happen to break you down and build you up so you can be all that you were intended to be.” ~Samuel Johnson

Friday, May 27, 2011

Pneumonia, ER, End of Induction

PICS: During the last couple of weeks of induction and even a couple of weeks after I stopped taking dex I really showed my steroid chubs. Mom mentioned on facebook how I was nursing my ER pokie spots (from having pneumonia) with phineas and ferb bandaids (using one box in a few hours) and people started bringing more to me. I got 18 boxes total!! My hair started shedding all over the place at the end of induction so my mommy gave me an army haircut like my daddy and I got dressed up to show him. A little girl who knows me won that giant zebra and wanted me to have it. Being on dex is like being pregnant, moody, cry for no reason, get up to go potty in the night all the time, hungry all the time, bloated and chubby.

(Written by mommy in facebook notes on May 27th, 2011)We finished phase one of Ty's treatment on Friday the 20th of May. During phase one they hit them heavy with the steroids and the chemo in the hopes that at the end of Induction (phase one) the leukemia will be totally gone which is called remission. They did a bone marrow aspiration to see if that is the case with Tyson and we will know the results of that test when we go in on Tuesday. The new phase is called consolidation and lasts four weeks with weekly treatments every Tuesday at PCMC. The rest of these phases will last a little over three years total, and are done because leukemia is notorious for hiding out
and coming back when people thought they had it licked. By the end of
those three+ years he should be cured of leukemia which is a miracle because most cancers don't have a cure. So here is what we do for a typical treatment day: On Friday we left at 6:00am, my dad drove me and Ty to SLC. When we got there we checked in at admissions for the rapid treatment unit (where they put him under for the spinal tap and bone marrow test) and went upstairs to the oncology clinic. The child life specialist who is there to make children feel comfortable and happy came in and asked if we wanted anything, toys, movie, etc. This time Ty was really tired (and hungry and grouchy) cause he had been up since 2:30am asking for food so we said no for that day. The last time we were there she brought him some little wooden shapes and paints and he had a ball painting away while we were there. The nurse came in and accessed his port (we put a numbing cream on his port an hour beforehand so he doesn't even know that they "poke" it to access it) and drew blood for the CBC (blood test). We waited for the results while Dr. Wright, his oncologist came and talked to us about the next phase and checked him out. Then we went down to the RTU and waited for a while, chatted with the nurse and the RTU child life specialist for a while, (when the nurse asked him if he could put a light on his finger tyson held up his middle finger..the nurse laughed and said, well at least we know how he feels about it he he), talked to the anesthesiologist and then I took him back to the operating section, the anesthesiologist puts some stuff in his IV, he falls asleep, I lay him down on the bed and leave and they do their thing. While we wait a lady checks on us a couple of times and gets me a lemon slushy mmmmm and then they come and get us (me and my dad) as soon as he starts waking up. We wait a while for him to totally wake up and then we sign some papers and leave. Pretty simple. They take such good care of us there that you really feel neglected, ignored, and mistreated if you have to go to a 'normal' hospital like we did a couple of days ago when Tyson was fevering. Any time they have a fever you are supposed to call the oncology clinic, they tell you to go to the ER so you can figure out what the fever is from. Since they are immune compromised sometimes a fever is the only sign they have something, and their bodies can't fight whatever it is. Tyson's ANC is up (Absolute Neutrophil count, the number that tells you if his body can fight infection) but he had been coughing for about a week and it was getting worse, and now fevering so off to PMC emergency we went. While we were there they accessed his port so they could put an antibiotic in his IV because the chest Xray said he had pneumonia. Well right after they started the fluid he started crying and his neck started to bubble up where the line went...I ran and got the nurse and he was like 'whoa I have never seen that happen before'. He stopped the IV and went and talked to the doc. The doc hadn't heard of it before either so they gave him a shot in his leg :( of the rest of the anitibiotic (a very thick painful gooey shot I think it was called Rocephin) that he didn't get in his port and sent us home.
The next day I went in to Dr. Jensen who is the pediatrician that Dr. Burton referred us to when he got leukemia. He did another CBC and another chest xray, showed me the pneumonia in his lung. His ANC was still up (which is good) and I told him about the port bubbling up thingy. He was concerned and said we needed to take him up to radiology and have them put some dye in it so they could see if there was a break in the line of the port cause if there was he was going to have to get it redone :(. At this point we were both hoping that the nurse at the ER just accessed it wrong and the fluid was actually just tracking up the outside of the line. Since he couldn't use the port for the antibiotic Ty got two more pokies in his legs and then after lunch (spaghetti of course, that's what he has all day every day right now) off we went to the hospital to put some dye in his line. That part was actually pretty cool cause they let me watch it and so I got to see where his line goes inside him and stuff. The people in radiology were so good and took good care of us so they redeemed PMC a little for me...though I will avoid the ER if at all possible from here on out. Dr. Jensen told me that I could go to the clinic any time and they would work me in so that I wouldn't have to go back to the ER...he was so great and helped us so much. The line was fine, which means it was the ER nurse and that was annoying...and good news all at the same time. That was a bad couple of days for Ty and for me. It was one of those 'reality' days where I was sad for my little buddy and all the things he has to go through. He spent the next couple of days nursing his poky spots with Phineas and Ferb bandaids, putting them on with a bit of neosporin, peeling them off 15 minutes later and putting new ones on.  He went through several boxes of bandaids that week, and he received over 20 boxes of them from friends and neighbors when they found out how much he loved them. (the phineas and ferb ones specifically) Thank You!!
We went to the tumbling show that night that Emily, Brooke, and Ryan are in and Ty came with me (with his mask on) to watch since he used to be in Emily's class I thought he would like it. It was a little long...but it was fun to watch and also really sad to watch another example of how Ty can't be a normal kid anymore.
Almost every day he starts out a question to me with 'when I get better a little can I...' and I always say 'yes!' and he always replies with a 'yay'! I'm glad he is so little cause he won't remember most of this so I'm just trying to make it as positive and happy as possible with as little trauma as possible. It is hard to see him round and chunky with tiny wobbly legs, with a mask on, and really short thinning hair. I didn't think that the way he looked would affect me like it has but it's a constant reminder that he is different now, and three years seems like a really long time for a little guy to fight an illness. So that night I talked to Brady on skype, had a good cry and that helped me get everything out and put everything back into perspective. The next day my dad gave Tyson a blessing and we went back to the doctor just to make sure he was getting better. We were both super excited that he didn't have to get any pokies that day...yay!! So even though he has cancer he is still alive, recieving top notch treatment and responding well to it so far. Now that he has been off the dex for a few days we are starting to see longer and longer happy moods in between the extremely long crying fits. He even ate a piece of candy for the first time since he started on the dex which means the real ty is surfacing cause he LOVES candy so much he refused to eat any real food on halloween last year. :) If there is candy in sight he wants it....but on the dex he didn't want candy at all. He spends a good portion of his days recently squeezing little dots of neosporin on his pokie spots and putting phineas and ferb bandaids on them...then peeling them all off an hour later and starting over. He has interesting ways of dealing with the trauma of what he is going through, but I'm glad he is finding ways to cope with it. He was singing along with the other kids yesterday :) and has even shown interest in playing outside a little as long as I stay close and interacting with his brother and sisters a little more so things are looking good and we hope this next four week phase (starts Tuesday May 31st and goes to PCMC weekly) will be a break for him as far as feeling like himself a little bit with no dex (steroid). We are still really thankful for all of the prayers, kind thoughts and well wishes, dinners, and really thankful to my mom and dad for sitting with him or watching Merin while I go take care of other things here and there. They are so patient and good..Merin cried the other day when my mom left and I was holding her! :) I'm glad she feels safe and happy with them it makes me feel like I can handle everything I need to do and still give her the security and love that she (and Tyson and the other kids) need. Life is good! Heavenly Father knows me and knows what I can handle. He is watching over our little family. :) Two days left of school!! I love having all of the kids home! yay!

Thursday, May 26, 2011

Sunday April 24th, 2011 Easter

PICS: On Easter Sunday the hospital gave me a basket and my daddy got to come home from Iraq and see me!! I got to go out in the hall and play with my brother and sisters (they aren't allowed in the ICS during respiratory illness season). I also got bored and played with mommy's phone some more and visited the ICS play area a few times.

Wednesday, May 11, 2011

Come What May and Love It ... Induction

PICS: I spent most of my first month of treatment (induction)on the couch, Grandpa brought over a baby goose for me to hold, I loved spending time with daddy while he was here, and by the middle of May my steroid chubs were really starting to show (in the swing with Merin)

(This was written in mom's facebook notes May 11th 2011)
One of my favorite quotes?..."Come what may, and Love it." ~ Elder Joseph B. Wirthlin, an LDS apostle
I'm not sure why I am writing this, it is extremely personal, and I should be sleeping. The house is completely quiet and I already took my contacts out so I am squinting at the screen, but thoughts keep swirling around in my head and I feel like I should write them down so they stop swirling. Every night I climb into bed with my heart leaping in my throat, that excited feeling you get when you think about Christmas morning or something...I get it every night. I have just talked to Brady on skype, and have peeked at each of my kids, put blankets on the ones who have already kicked theirs off and I feel happiness and sometimes I feel guilty that we have so much when there seems to be sadness and heartache all around us. People tell me all the time that i am amazing. I'm not sure what to say when people say that. I don't think there is anything amazing about me. I'm just a regular person with pet peeves, fears, weaknesses, quirks, zits, and bad habits (and yes I still bite my nails, they are super sanitized nails now since they get hand sanitized about 100 times a day, but I still bite em). I'm pretty shy and get tongue tied in social situations, but other than that I don't think I am much different from anybody else. When I was in college I took an institute class from my dad and he taught a concept that has directed my life ever since. He said, "Pain comes, misery is optional". I guess when people say that I am amazing it is in reference to how I react to certain situations. I do have a gift of quiet calmness and it takes a lot to get me upset. That isn't something I created, it is a gift, a personality trait given to me by my Creator, so I take no credit for it. I have learned some lessons that have added to my calmness the most of which is that Heavenly Father is in charge and so if you are willing to accept that then you realize that there isn't a whole lot worth getting upset about. If you follow Him you have peace.
Sometimes I have to learn that lesson over again. :)About a year ago I about drove myself crazy thinking about my husbands upcoming deployment and fearing that this time he wasn't going to come back alive. In everything that went through my head, two contigencies would come up, the one where Brady was alive, and the one where he wasn't. Many of my thoughts were consumed with what life would be like, what people would say to me, what I would say to them. I prayed (begged, pleaded) every night that Brady would come back alive...even though deep down I knew I couldn't really pray for that. You see, I knew that I was never going to really have peace of mind until I prayed for peace with whatever the Lord had in store for me. But I didn't want to admit to Heavenly Father that I would be ok if Brady didn't come back. So I kept pleading, and the thoughts kept haunting me. That was a hard one for me to ummm how do you put it, give up?When I finally got on my knees and said 'please give me the peace and the strength to deal with whatever happens' I received the peace I needed. I still don't know if Brady is coming back alive...sure hope he is :) but I know that whatever Heavenly Father has in store for us I can handle it because of the peace He gives me. Learning that lesson, and feeling that peace is the main thing that prepared me for Tyson's diagnosis of leukemia. Doesn't mean I didn't cry, doesn't mean I wasn't sad for my little buddy. It means I knew that no matter what happens it is in the Lord's hands, and it's ok. That's not the only way I was prepared for this, just the main one. I know the Lord is involved in the details of our lives...if we invite Him to be involved.
There are many little things I have thought of that helped me handle those first few days without totally freaking out. My bff from childhood and I have reconnected through facebook and even though she doesn't live close, we have uncanny similiarities in the way we raise our kids and our kids have a great time with each other when we do get together...She now has seven kids and spent several days at primary children's with one of her kids, they were released from the hospital a few days before Tyson was admitted. As we prayed and fasted and thought about her I thought about her other kids and wondered how I would handle being at the hospital 24/7 with one kid with the other kids somewhere else. I thought a lot about that and thought of my parents, family, and neighbors and knew they would be taken care of if something like that happened..I had no idea of course that it was indeed about to happen. When Brady left last fall, I moved all of the kids' beds downstairs so they would all be near me at night. Four of them sleep in the 'family room' and two of them sleep in another little room. I'm glad we already had that arrangement because now I can help Tyson in the night (he wakes up several times a night to tell me what he wants for breakfast, that's because of the steroids he's on right now, yes he gained almost three pounds in one week) and I can also get up with Merin when she needs me, help Emily with her nightmares (she has them more often when Brady is gone), and help Ryan back into bed when he sleepwalks :) (I'll thank you to not mention that to him as he would be pretty embarrassed and is not one who likes to attract that kind of attention to himself.) In fact I'm not really sure how I would feel about you talking to me or my kids about any of this, I think I would rather pretend you hadn't read it. :) Why do you share it then, you ask? I have felt like I should ever since I started posting stuff on here, I don't know, maybe if you read this and then hold your kids a little more, pray a little more, or treat your spouse(if you are lucky enough to have one) with a little more kindness then maybe it will do some good in the world. My theory on that is, if you treat your spouse like a super hero, then he will do his darndest to be your super hero. If you put him down and treat him like he is an idiot, he won't try to be your super hero for very long. my that was random wasn't it? I was also prepared to handle the medical things they were doing to Tyson because in February Brenna had surgery on her arm..I can't tell you how stressed out and nervous I was for that. And in March Emily had her tonsils taken out...again, less nervous and stressed out because now i knew a little bit about what to expect but still nervous. And so those recent experiences made it so that I could send my little buddy off to surgery and feel ok about that. I was comforted by the thoughts from the recent LDS conference that there are angels in the hospital helping the kiddies. I also potty trained Tyson in February...and we got rid of his pacifiers for good in April. Simple little things, but pacifiers would have been little germ petrie dishes, and potty trained, well lets just say I'm glad I'm not putting on purple gloves and changing chemo contaminated diapers all day. I am so grateful Brady was able to come home and we could get things settled and worked out before he left again. His job is difficult and it is not easy to say goodbye to him and miss him for so long, but the benefits we receive from this sacrifice make it possible for us to not have to worry about how to pay for Tyson's medical care and travel which is huge when you are treating a child with cancer. I don't think we are particularly special or that our trials are any huger than anybody else. They might be a little more public than some, but everybody has stuff to deal with. I can't express my thoughts as well as Elder Wirthlin did in his talk:
'the dial on the wheel of sorrow eventually points to each of us. At one time or another, everyone must experience sorrow. No one is exempt.'
'Learning to endure times of disappointment, suffering, and sorrow is part of our on-the-job training. These experiences, while often difficult to bear at the time, are precisely the kinds of experiences that stretch our understanding, build our character, and increase our compassion for others.
“God so loved the world, that he gave his only begotten Son.”2 The Lord Jesus Christ is our partner, helper, and advocate. He wants us to be happy. He wants us to be successful. If we do our part, He will step in.
He who descended below all things will come to our aid. He will comfort and uphold us. He will strengthen us in our weakness and fortify us in our distress. He will make weak things become strong.3' You can read his whole talk on LDS.org if you are interested. It's called 'Come What May, and Love It'.
I am lifted by all of the kind thoughts, prayers, and well wishes of all of you and appreciate your understanding of his immune suppressed state.
So what now? We take one day at a time. I only leave the house if I need to, and that's ok cause this is a temporary thing, and cause I like being home better than anywhere else anyway. Tyson, and the other kids too are feeling a little insecure and need me and each other, so I am spending as much time as I can giving loves and paying attention. Tyson likes to be held a lot, so in between those times I get other stuff done. I like folding laundry and mowing the lawn, those things give me some 'me' time to spend with just my thoughts which I like. The house is cleaner, and so are my hands and everyone else's hands who come to our house. They are big on hand-washing at PCMC, every time you go in a room or out of a room you use handsanitizer. I am a little more patient than I usually would be with Tyson's mood swings and frequent long and loud crying cause I know a lot of that comes from the steriods. My mom and dad watch the kids while we go to Utah or other places cause they know how to keep Merin happy and secure feeling, and we have similar parenting styles and temperament. The kids can't have friends over (in the house) right now, but that is also temporary and will get better when his neutrophil counts rise. The kids(except for Ty) still do all of their normal activities, scouts, piano, school, church, and tumbling. Me? I am doing really good. I miss Brady. I know it sounds wierd but I am extremely thankful that Tyson has the type of cancer that he has, the treatment is long, but not as rigorous as some others, and the outlook is good. I am extremely independent and enjoy doing projects by myself but I also understand my limits and if I can't get something done I don't worry about it. I'm not the type to overdo things-I like things simple and so I keep it that way. I'm not saying everyone should be like that..just explaining why I am doing fine. So life goes on, and it is good, and we are very blessed. I know the initial reaction to something like this is to 'do' something and we appreciate the offers and will keep you all in mind...so far we have the help we need and are doing really really well. Thanks for your prayers. Amy