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!
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!
