Great day today
I'm sitting here in Ty's corner on the couch. I feel like if he walked in here right now I would get yelled at :) It's as if I am in violation. I can't help but think it, but with all the heartbreak I've experienced in the past couple of weeks, I can't stop my mind from having fleeting thoughts about what it would be like if this wasn't Ty's corner anymore. I think I would want to get rid of this couch. We would have to burn it. I would never feel comfortable in this spot, just like I don't feel 100% comfortable sitting here right now. But, it does help me feel so close to him to snuggle my butt into the same cozy spot where he rests his all day long :)
We had a great day today. Especially tonight. Lou was home and we played together as a family for over an hour. At one point I was running around chasing Gavin like crazy as we both screamed and threw ourselves on the floor over and over again. Ty was loving it, and after a while he wanted to get in on the action. He asked to sit on the floor so he could pretend to push me down. I agreed and couldn't believe how well he sat straight up on the hard floor. He would hold his hand out to my shoulder or head and push me as I pretended to get thrown across the room. The laughs, screeches and bubbling giggles that were erupting from this room were just heavenly. I don't ever want to forget tonight. It was so normal and so fun for all of us. We even let Gavin stay up extra late so we could enjoy it as long as possible. Thank you, God.
Ty will not be starting his chemo tomorrow. Instead he is on the schedule for Thursday. The Cisplatin that will be adminstered can be very harmful to the kidneys, so I had to drop off a 24-hour urine sample for analysis in order for him to be granted clearance. Unfortunately, the results were "borderline". Meaning, Ty's doctor was debating on whether or not he should lower the dosage to be safe in order to avoid any potential kidney damage. Instead of taking a chance at lowering the dose when it may not be necessary (or administering too strong of a dose that could hurt him, for that matter) we agreed that it would be best to delay treatment one more day so that Ty can go through a more detailed kidney function test. Tomorrow we will go to Sloan Kettering so that his blood can be injected with a dye and monitored as the dye travels through his system and is excreted. That will give a more accurate picture of how his kidneys are absorbing the drug and will help his doctors determine the strongest, yet safest, dose. It takes about 3 or 4 hours, plus Ty will have another baseline hearing test (another potential side effect of this particular drug is hearing loss) so it will be a long day for us. He is at the worst age for all of this. Trying to get him to be patient and sit still for all of this testing is difficult, but he really is a good sport about it. Back to the hospital Thursday for his 6-hour infusion, and again on Friday for more bloodwork and fluids. I hope the little fighter tolerates it well. He is feeling so good, I think he will do great.
Build a Bear
When Ty first got sick, he recieved a gift certificate to Build a Bear. It was so nice of our friends, but Ty got so sick and was on such a crazy roller coaster that we never had the chance to visit the store since. Well, when we were on our way back from the hosptial on Friday I promised Ty a toy. We stopped at a mall in Westchester on the way home and there was a Build a Bear there. In true Ty fashion, he picked the most unique and stand-out bear in the bunch. A bright-colored, tie-dyed bear with peace signs all over it. He helped to stuff the bear and he picked out a heart for his bear. He didn't think the bear should have any clothes or anything else, he loved the bear just the way he made him. Ty named the bear Rainbow and he has been sleeping with him ever since :) This is the only stuffed animal he ever, ever slept with. So precious!
Now I am going to try and steal Rainbows spot. Goodnight and sweet dreams. With all of our love, XOXO.
We had a great day today. Especially tonight. Lou was home and we played together as a family for over an hour. At one point I was running around chasing Gavin like crazy as we both screamed and threw ourselves on the floor over and over again. Ty was loving it, and after a while he wanted to get in on the action. He asked to sit on the floor so he could pretend to push me down. I agreed and couldn't believe how well he sat straight up on the hard floor. He would hold his hand out to my shoulder or head and push me as I pretended to get thrown across the room. The laughs, screeches and bubbling giggles that were erupting from this room were just heavenly. I don't ever want to forget tonight. It was so normal and so fun for all of us. We even let Gavin stay up extra late so we could enjoy it as long as possible. Thank you, God.
Ty will not be starting his chemo tomorrow. Instead he is on the schedule for Thursday. The Cisplatin that will be adminstered can be very harmful to the kidneys, so I had to drop off a 24-hour urine sample for analysis in order for him to be granted clearance. Unfortunately, the results were "borderline". Meaning, Ty's doctor was debating on whether or not he should lower the dosage to be safe in order to avoid any potential kidney damage. Instead of taking a chance at lowering the dose when it may not be necessary (or administering too strong of a dose that could hurt him, for that matter) we agreed that it would be best to delay treatment one more day so that Ty can go through a more detailed kidney function test. Tomorrow we will go to Sloan Kettering so that his blood can be injected with a dye and monitored as the dye travels through his system and is excreted. That will give a more accurate picture of how his kidneys are absorbing the drug and will help his doctors determine the strongest, yet safest, dose. It takes about 3 or 4 hours, plus Ty will have another baseline hearing test (another potential side effect of this particular drug is hearing loss) so it will be a long day for us. He is at the worst age for all of this. Trying to get him to be patient and sit still for all of this testing is difficult, but he really is a good sport about it. Back to the hospital Thursday for his 6-hour infusion, and again on Friday for more bloodwork and fluids. I hope the little fighter tolerates it well. He is feeling so good, I think he will do great.
Build a Bear
When Ty first got sick, he recieved a gift certificate to Build a Bear. It was so nice of our friends, but Ty got so sick and was on such a crazy roller coaster that we never had the chance to visit the store since. Well, when we were on our way back from the hosptial on Friday I promised Ty a toy. We stopped at a mall in Westchester on the way home and there was a Build a Bear there. In true Ty fashion, he picked the most unique and stand-out bear in the bunch. A bright-colored, tie-dyed bear with peace signs all over it. He helped to stuff the bear and he picked out a heart for his bear. He didn't think the bear should have any clothes or anything else, he loved the bear just the way he made him. Ty named the bear Rainbow and he has been sleeping with him ever since :) This is the only stuffed animal he ever, ever slept with. So precious!
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| Ty snuggling with Rainbow |
xoxoxoxoxoxoxoxox for you Ty
ReplyDeleteas always soooooo happy to hear how great your doing lil Ty. We continue to pray for you ALWAYS.....praying for a miracle - to be cancer FREE!! Please God, hear our prayers
ReplyDeleteWhat a great photo....praying for Ty's Miracle!!!!
ReplyDeleteHang in there girl!
ReplyDeleteRemember it is important to keep the strength, faith, love and high spirits for this coming round. After the storm comes the rainbows just when the sun begins to shine!
I can see them!
happy to hear how great ty is doing and i am saying lots of prayers that round #2 kicks cancers butt!
ReplyDelete