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 :)