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, receiving 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!

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.

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.” 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.' 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 from 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 hand sanitizer. 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 weird 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

Saturday, April 23rd-Tuesday 26th, 2011

PICS: On saturday the nurse brought me some cars to play with, I had frosted flakes, got to see my siblings, they brought me some balloons and toys, played with the blinds, had surgery, and was bouncing off the walls from my oxycodone

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Mom's facebook notes, page 4: Saturday was a good day. I was excited that Tyson was going in for surgery cause my mom and sister brought the kids up and I got a chance to be with them while he was in surgery. I wasn't really nervous for his surgery because two of my daughters have had surgery recently so I knew what to expect and I felt peaceful. The anesthesiologist was really good, and they gave him a sedative before they took him back so he wasn't scared or anything. The procedure lasted about an hour so I got to chat with my kiddies for a while before I went back to sit with him while he woke up. When he woke up he wasn't sad at all, he just saw me and hugged me and I got in the bed with him and we rode back up to his room. He was starving of course cause he couldn't eat that morning so he had a bowl of honey nut cheerios and some oxycodone for the pain and finally got the IV taken out of his hand. He was happy about that and happy that his siblings brought him some balloons and toys. He had a little collection of balloons by the time we left the hospital, they were one of the things that comforted him when he was tired or not feeling well, he would hold onto all of the strings of the balloons. My mom sat with him for a while so i could go out in the hall and hang out with the kids. Ryan kept saying he had an earache and I wasn't sure what to do about that. We were trying to decide if my sister was going to take him down to the ER and sit there with him forever, or try to find an urgent care center or what. We didn't really have any good options, and I had no way of getting him anywhere since i had to stay there with Tyson. There was a gathering of people out in the hall celebrating-I learned later-a bone marrow transplant. The mom of the recipient noticed that Ryan was crying and told my sister Kim who was out in the hall with them at the time that her pediatrician was there with her and wondered if we wanted him to look at his ear. Kim came and got me and the doctor went out to his car, got an otoscope, looked in his ear, said it was about to burst and walked down to the pharmacy to order some pain meds and amoxicillin. He gave me a piece of paper with his pager number on it in case I needed him. What a miracle!! I knew immediately that this was an answer to my prayers and that Heavenly Father was going to watch over me and my kids while we went through this new experience. The oncologist who did his surgery came to talk to me while my mom and kids were still there so I fed the baby while she told me about the spinal and the marrow aspiration, told me that they didn't find any leukemia cells in his spinal fluid (yay!), told me how happy she was to see the top surgeon of the hospital putting in Tyson's port, and explained to me all the details of the study in case I wanted Tyson to be a part of it. She was awesome and answered all of my questions. I think her name was Dr. Afyfy. Tyson was super happy while he was on the oxycodone. When it started to wear off, he wasn't super happy anymore. They started his chemo on Saturday after I signed all of the papers for the study. They also started the dexamethasone sp? which is a steroid that enhances the effectiveness of the chemo, increases his appetite, and makes him super moody. This day I started to recognize all of the ways we are blessed and all of the ways Heavenly Father prepared us to be able to deal with this. I was able to take it all in and know that it was something we could do and make it through. I was still praying a lot, and whenever I wasn't tending to Tyson, I was reading all of the nice messages and comments people were sending me on facebook. That means a lot to me, and gave me something uplifting to do. It is definitely hard to keep a three year old entertained in a hospital room, especially when suddenly he was feeling great because he was on oxycodone. Saturday afternoon he finally had a nap about the time my sister Melissa and her husband brought me some dinner and chatted for a while. That was super nice to have a break and chat with some peoples who have been through this before. :) Sunday morning Tyson was super grouchy when the nurse was checking his vitals and stuff...until she brought him an Easter basket from the hospital.:) Sunday his mood was super happy and super mad back and forth all day long. Brady and the kids came and he got to come out in the hall with his mask on and say high to everyone. Brady stayed with us the rest of the day and Tyson had another long afternoon nap so we were able to talk to each other, the nurse, and the oncologist and sort of get Brady up to speed with everything. He was super mad when he woke up though, and started yelling at me whenever I breathed on him. :) My sisters Kim and Sarah came to visit with their husbands and bring us dinner and he was a little monster the whole time they were there...until the very end when i force fed him some oxycodone. Suddenly the old Ty Ty came out right when they were leaving and they got a glimpse of his happy side. :)

 Monday was more of the same. Brady took the other kids and they toured some things in Salt Lake and went to the Olive Garden and then came to see us again. I got to chat in the hall with the kids for a while again which was nice. Tuesday he was given his one time dose of a certain chemo drug called PEG-somethingorother and they watched him to make sure he didn't have any bad reactions to that. After that we just wrapped up all the discharge stuff, got his meds from the pharmacy, had his ear checked by the resident (yep, ear infection) got some more meds from the pharmacy for that and we were finally on our way home!!! YAY! We were so excited to get home and just be a family for a while and let Tyson chill in the comfort of his own home. We came home to a super clean and sanitized house, and dinner in the fridge, thanks to my visiting teachers, who along with neighbors and friends, and my sister and bro and their spouses, cleaned and cleaned. That was AWESOME to walk into a clean house, cause I certainly hadn't left it that way. ;) In the next couple of days I held Tyson a lot, and in the mean time installed 7 hand sanitizer dispensers throughout the house (3M avagard is awesome) and we all started our new routine of being super clean and careful. They told us that hand washing is his best defense, that we can't protect him from everything, especially because a lot of the infections he might get will come from bacteria in his own body, but that we should be as clean and cautious as we can. They told us to expect to be in the hospital for at least two days if he gets a fever. :( They showed us how to read the numbers on his blood test and that if his ANC count is below five then we need to be extra cautious. It was at zero when we left the hospital and was still at zero at his first appointment last Friday so we are still at a situation where we don't take him places and don't allow child visitors. Other than that life is back to as normal as possible and we'll take one day at a time. We have really appreciated all of your thoughts, fasting and prayers, cards, dinners, treats, and well wishes.
Feel free to ask questions if you have em and know that we still love y'all, we just can't see people as much right now. :) Each day we realize a new way in which we are blessed and were prepared for this and we are ready to tackle it and be happy all at the same time. We feel peace and are thankful for the Source of that peace. Brady leaves Saturday (May 7th) and we are so thankful he was able to come home and be with us for a while and figure all of this out. He will be home the middle of September. (Yay!) We are super thankful for his job and the benefits that come with it. Life is good! :)

Monday and Tuesday, April 25th & 26th

On Monday and Tuesday I played with my daddy, he brought me a flag and I practiced wearing my mask which I was not fond of at first. I got to go home Tuesday Afternoon!

Friday April 22nd, 2011

PICS: On Friday I learned to push my IV pole around and played alot with my mom's cell phone...yup that's my belly button, one of the many pics I took that day. I loved the fishy tiles above the tv.

Page 3 of mommy's facebook notes: The next few days after that are kind of a blur. Tyson got to ride in a wagon up to his 'new room' and my mom and Brenna and Merin joined my dad and I on the way up. I know I told this in the last note: As soon as we got to the room Tyson's new nurse took him to the kid kitchen and he picked out some frosted flakes and a banana much to his delight cause he had been asking me for frosted flakes.
Thursday night an oncologist came in and talked to me for a few minutes while I fed Merin. I have no idea what she said to me. I think she told me that we would know more about what kind of leukemia it was in the morning. I think she described the difference in treatments between AML and ALL a little bit and that she thought he probably had ALL. I think she is also the one who told me that if it was AML we would be staying there for longer, that the treatment was only a few months long, but that the outlook was worse than ALL and the treatment for that is 3 years long, but the cure rate is 85-90 percent. That night in the middle of the night Brady called because he had just read my email. I told him it was leukemia and that the red cross should be contacting him soon so that hopefully he could come home for a while. It was really hard to tell him like that. Friday morning (April 22nd, 2011) Ty had some more frosted flakes :) and we took him downstairs so they could do an ulstrasound of his heart. While we were down there the complimentary food cart came that is for the parents so I missed it...I hadn't really thought about eating even though yesterday I had a couple of Ty's graham crackers for dinner and that was it. Tyson's nurse knew we were gone and got me some stuff from the cart. That is just one example of the many ways those nurses are so awesome. In the ICS one nurse and one tech has two patients, they receive top quality care, not just medically but emotionally as well. He got some playdoh for being good during the ultrasound and the tech played it with him for a while, she made him a mouse and a snake to eat it. :) The oncologist Dr Wright came in that day and confirmed that it was ALL and told me a little bit about what they would be doing for treatment for the first month. She said she knew that was a lot to take in so she left for a while and came back later in the day to describe in further detail what kinds of medicines he would be on for the first phase of treatment called induction. (five weeks long). They gave him another blood transfusion to get his body ready for his surgery in the morning, and showed me the options we had for his semi-permanent IV that they would put in during his surgery. I chose the power port because when it isn't in use it is under the skin, no tube hanging out to have to keep dry, clean, and maintain with saline and heparin. He would also get his spinal tap and bone marrow sample taken while he was under for the port installation. The spinal tap is to test the spinal fluid to see if the leukemia was in there, and to give a dose of chemo right to the spine because the spine and brain have a leathery protection that blocks normal chemotherapy. Leukemia tends to hide in the brain and cause the leukemia to come back after they thought they had it licked. So now they put chemo right into the spine to get past that leathery protection and make sure to get any leukemia hiding in there. His other treatments for the first five weeks include a chemo called vincristine administered once a week in the IV, a steroid that enhances the effectiveness of the chemo taken twice daily in pill form, a medicine to raise his ph level, a medicine that prevents pneumonia, a laxative as needed cuz some of those meds cause constipation, oxycodone as needed for bone pain that is normal with leukemia and for after the surgeries, zofran for upset tummy, and amoxicillin cause he had an ear infection when we left the hospital. So that's what the oncologist described to me that day. The social worker came a couple of times that day too to check on me and learn a little bit about our family. She was nice and knew what to expect because she always works in the ICS which is mostly cancer patients. This day I was sad, sad that I had to give my little buddy medicine that would make him sick, sad that I couldn't be with my other kids and answer their questions and give them hugs, sad that Brady was somewhere overseas and didn't have much information or anyone to lean on, sad that I had to suddenly wean Merin and that she was too young to understand what was going on. I spent most of the day praying and pleading with the Lord to be with my kids and Brady to give them and me the peace that we needed and the strength to make it through this. Brooke and my nephew Kalvin came that day with my dad when he brought Merin up to get fed. Tyson got to go out in the hall to see them for a few minutes with a mask on and they brought him a CARS poster to color and had a little fun together. Tyson mostly ignored most of the people who came in his room while we were there, he let them check his vitals and stuff, but wouldn't interact with them. He watched tv most of the time. When he finally fell asleep at 7 I went down to the cafeteria to get some food. I wasn't really hungry but knew that the donut and half a bagel I ate earlier in the day wasn't enough and that I couldn't afford to get sick. It was hard to be around a bunch of people in the cafeteria. It was very strange to see people living their normal lives, I felt like being out of the ICS was like visiting a foreign planet. I was so overwhelmed with the news of the past two days that I choked down my hamburger and salad with tears streaming down my face and was glad to get back up to the safety of the ICS ward. I think Brady called that night again to let me know he got to come home for a few days. Tyson slept pretty well that night, he had to get up every few hours to pee cause of the IV, but other than that we actually got some sleep. :) I fell asleep that night praying that the surgery would go well, and thanking the Lord for the angels who were taking care of my kiddies.

Diagnosis page 2 April 21st 2011

(Written by mommy again) This is page 2 of my facebook notes, a continuation of the diagnosis day, written Sunday night the 24th: Okay (Whew..Tyson's asleep) where were we...I just want to mention how strange this is for me that so many people are suddenly following our life on a daily basis. I think I am naturally a reserved, quiet, private person. I don't like to express or show my feelings in public. So I am writing this primarily to have one place people can go if you have questions so that I can let yall know what is going on without having to repeat the stories and updates a million times. I understand...I would be curious and concerned if someone I knew was going through this so here ya go. I just hope that you will respect our privacy at home as we adjust to this 'new life' and respect that we can't have lots of visitors (because Ty is immunocompromized) so even though your first reaction is to 'do ' something for us, for the most part the main thing you can 'do' is say lots of prayers. Don't get me wrong, I understand I can't do everything by myself, just know that if there is something you can do, i will ask. :) Please make sure you don't visit or bring anything from a home where you have or have been exposed to an illness. Please don't invite my kids over if someone at your house is ill. We know we can't avoid every situation where we will be exposed to things, but we have been instructed to be very cautious.

Anyhooooo on with the story. Picking up on the morning of Thursday, April 21st. I left Dr. Burtons office in tears and as I was driving to the hospital for the second lab Dr. Burton called my cell and told me to go directly to the 6th floor of the hospital (pediatrics) after the lab was completed, that he had called Dr. Jensen (whom I actually have met before through mutual friends) and he would meet me up there with the lab results and would contact Primary Children's for me etc. I called my mom on the way into the hospital, she was already watching the littles for me, and my dad arrived shortly thereafter. :) We sat in that room for a while waiting for results etc. I called brady's mom, called the red cross so they could get started on notifying Brady, called my visiting teacher to let her know I wouldn't be home that afternoon for her visit, and made some arrangements for the kiddies in case they wanted to stay and go to school Friday. My dad and I worked out how we were going to get down there with the little buddy, and how the rest of the kids would go later with my mom to my sister's house in Kaysville. My brother in law who successfully fought (exoskeletal ewings sarcoma) a rare form of cancer 15 years ago came up to the hospital and hung out with us, which was extremely helpful because he knew what kind of questions to ask the doc, and he got me some lunch :). The doc tried to get us directly admitted to Primary Children's based on the labs, he said he didn't see any blasts but that that didn't mean they weren't there. He said it could be a bone marrow infection, or leukemia and let us know a little bit about what to expect when we got to Utah. Tyson and I went home and he watched tv while I wandered around the house in a fog gathering things that I thought we might need, I also got the ds's out of their confiscation hiding place (I did have to pray to find them since I couldn't remember where I had hidden them :), and plugged them in to charge so the kids could use them later on their trip. I finished up an email that I had started to write the night before to Brady letting him know what we knew so far. (Their internet had been down since Tuesday night so he had no idea yet which I thought was probably fine since he would just be going crazy anyway waiting for info) We went to my mom's and I fed Merin and we hit the road. I held Tyson and we both tried to sleep. In the ER at PCMC lots of doctors came to see him, feel his tummy, ask about his symptoms, take more labs :( and that was when we got the official diagnosis from the pediatrician there. She was great, and filled out Brady's red cross alert paper in a way that requested his presence for us so we are thankful for her. They finally got us admitted and into Ty's new room at about 11:30. The nurse immediately took him with her to show him the special snack kitchen and got him some frosted flakes and a banana. He was happy as a clam until he realized that we were sleeping there, it took him a while to go to sleep, and once he was asleep he cried in his sleep for a while off and on. They gave him a blood transfusion some time that night, and he slept a lot better after that. I am betting that he slept better cuz his heartbeat was back to normal instead of working overtime to pump the limited supply of blood he had before. so there you have it...I'll write more later if I feel like it. thanks for all of the kind thoughts, faith, and prayers. Amy

Diagnosis, April 21st, 2011

PICS: Hangin out in the ER with my Grandpa and mommy, the nurse gave me a new lobster for being so good, I got lots of stickers today (lots of pokies) and put them all over the Red Cross sheet that they faxed to get daddy home for a couple of weeks, got a chest xray and then was settled into my 'new' bed in the ICS with my new fishy blanky from the ER

By Mommy:

This is copied from my notes on my fb page. I don't really want to make my facebook page public, so I am creating a blog so others can read about Tyson's experiences, and so that I can have a record of it all in one place, this entry was written on facebook Sunday night, the 24th while we were in the ICS at Primary Children's Medical Center: This is to answer the question of how I knew something was wrong and how I found out. Keep in mind that I didn't put this puzzle together until he was diagnosed. After the diagnosis I started to think about the last couple of months and things made sense and fit into the symptoms of A.L.L. Leukemia that I hadn't even thought much of when they were presenting themselves. Several weeks ago, like February Tyson started to gradually be more tired during the day. He started tumbling in January and at first LOVED it and was so cute and did everything he was supposed to do and had a lot of fun. Then he gradually started to lose interest, laying around and being naughty when he was supposed to be doing cartwheels and rolls and stuff. I just figured he was following the lead of a couple of other kids who are like that in that class. At the same time he started falling asleep during Sacrament meeting (church) and started to be more clingy and not as active...again didn't think much of it. Those symptoms could be attributed to a lot of things...like being three for instance. Probably three or four weeks ago he told me his legs hurt and sometimes would make me carry him down the stairs and stuff. That only lasted a few days and I again attributed it to his being three. I remember telling Brady about it on skype one night and when he asked if I was going to take him to the doctor I laughed and said what is the doctor going to say? What they say every time right? that they are fine and here's your bill. :) A couple of weeks ago he started to go pale and was tired and grumpy a lot. He crawled up on my lap and snuggled a lot. He didn't eat much and I figured he had something and would get over it soon. He didn't have a fever so I wasn't even thinking about taking him to the doc...It was a long winter filled with lots of bugs goin around and we had our fair share of them. He continued to get paler though, and more tired... last Sunday we went to my parents house for dinner and people kept commenting on his paleness, he was so pale by then that his skin looked almost yellow. My sister started looking up 'yellow skin' on the internet and crazy stuff like hepatitis was the only thing popping up. I was a little concerned by then and Merin had a doctor appointment on Wednesday so I figured I would have the doc look at him. Tuesday night Emily got the stomache flu and so I had to cancel Merin's appointment. By Wednesday night Tyson was so pale that there wasn't any pink left anywhere, not in his cheeks, not on his earlobes, he looked wierd...and he had hit his knee on a metal vacuum a week and half earlier and it was not getting better so I thought well ok, I'll just run him over to urgent care and have them xray the knee and see if the skin is something I should be concerned about. The PA there was awesome, very attentive, asked lots of questions, xrayed his knee (it was fine) and took some blood to send to the lab. He didn't seem super concerned, just said there were a few things it could be so it would be a good idea to test. They pulled the blood, sent it to the lab at the hospital. When the labs came in that night like at 930 or 10 the ER doc called and asked if Tyson was ok, he seemed concerned and said the initial results of the lab show that Tyson was VERY anemic and that I should have him see our family doc in the morning. He said that means either something is destroying red blood cells, or that something was preventing them from being made and we needed to find out why. I hung up the phone and googled it and sure enough pale skin was right there in symptoms of anemia. The ER doc called back about an hour later and said the final results of the lab showed that his red blood cell count was very low, that his platelets were low, basically everything was extremely low exept a certain type of white blood cells called lymphocytes. He also said he didn't want to alarm me, but that I needed to not only get into my doc in the morning but that I should repeat the lab and probably needed to go to Primary Children's to have his marrow tested. I was alarmed, I had heard enough about blood cells in the past to know that this wasn't good...googled low RBC count high lymphocyte, sure enough Leukemia popped up. In the morning, Dr Burton who we love, on the verge of tears as he read over the labs confirmed what I worried about all night. He literally said, 'this is very bad, it looks a lot like leukemia, you need to go to Primary childrens today and have his marrow tested. He also said its time to call on whatever help you can get, get blessings, etc. I appreciated his frankness and honesty, there is nothing worse than not knowing,,,and by then I knew, even though there was no official diagnosis yet. He told me to go repeat the labs (yes Tyson more pokys sorry :( ) to make sure there wasn't an error. Aaaaand this is to be continued cuz it's 1:00 in the morning and Tyson finally went to sleep an hour ago so I better get some sleep before his meds wear off and the angry bear emerges. nite :)