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.
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.
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