To go or not to go
Lou and I left the hospital today feeling very good. My sister came into the city to spend the morning with us and Ty was actually sent off with a clean bill of health so quickly that we were able to enjoy a nice breakfast at one of our favorite places.
All of the neurological issues that had us so concerned didn't seem to scare Ty's doctors much. In fact, his primary doctor raised a number of points about Ty's symptoms that show they are probably not even tumor related. For example, Ty's weakness and lack of hand-eye coordination is bi-lateral (meaning, the weakness presents itself equally on both sides of his body). The Cerebellum lesions are both on one side of the brain, and if the symptoms were related they would be present on only one side of his body. After several neurological tests, we were also told that Ty isn't showing any signs of brain stem compression. We knew that because we are sure that the radiation did the job and wiped out that cancer - but still it is SO refreshing to hear some confirmation from his doctors. Ty's increasingly slurred speech and shakiness can be attributed to the Temodar. We were told that this chemo really kicked his *ss, making him very weak and extremely fatigued as a result. I was so concerned that Ty's symptoms appeared as if he were drunk (which is indicative of Cerabellum issues) - but those same symptoms can be because he is totally groggy and just wiped out overall. The team agreed that that is what's going on with him. What a tremendous relief!
I didn't know what to expect over the course of this 28-day cycle because Ty has never been on this medication, but I was told today that we can expect Ty to remain at his worst for another few days. That the worst effects are usually seen within the week following the last dose - which was Monday. So, we hope to see some gradual improvement mid-week next week. Ty's bloodwork came back good, so he is not neutropenic and we don't have to keep him in a bubble. He also gained another 2/10ths of a pound (2 weeks in a row!). As you can probably imagine, I was smiling from ear to ear this morning and very happy to see his doctors for a change :)
Of course, in true Ty fashion, that feeling of relief just wasn't meant to last. Ty was restless during the entire car ride home. I just couldn't wait to lay down in bed with him and snuggle him to sleep when we got home. As soon as he laid down, though, he started wheezing. Bad. His upper respiratory congestion is getting worse and worse and Lou and I are totally on edge. We called Sloan for a prescription, but his doctor wanted to see Ty if his breathing is that bad. The medication I was requesting was something that was given to him to dry him up during our last hospital stay and it worked so well, but I was told that they only use it inpatient and an outpatient prescription just isn't an option. Argh! Lou and I created a make-shift suction with a giant syringe and a tube... we put a humidifier in his room... we gave him an antihistamine, and now we are just waiting. Listening to him struggle with every breath, and looking at each other with the question, "should we go?" The last thing we want to subject him to is another long car ride and an ER visit, but I'm just not sure where this is going to go. If he stays the same, I think we can stay home and just keep trying the homeopathic remedies like a steamy shower, but if this gets much worse we are going to have to go back to the hospital. I just feel gyped. We had a few hours of feeling good, and now we are filled with panic and concern again. I have a feeling I will be sleeping in a hospital bed tonight but I hope not. We'll keep you posted.
All of the neurological issues that had us so concerned didn't seem to scare Ty's doctors much. In fact, his primary doctor raised a number of points about Ty's symptoms that show they are probably not even tumor related. For example, Ty's weakness and lack of hand-eye coordination is bi-lateral (meaning, the weakness presents itself equally on both sides of his body). The Cerebellum lesions are both on one side of the brain, and if the symptoms were related they would be present on only one side of his body. After several neurological tests, we were also told that Ty isn't showing any signs of brain stem compression. We knew that because we are sure that the radiation did the job and wiped out that cancer - but still it is SO refreshing to hear some confirmation from his doctors. Ty's increasingly slurred speech and shakiness can be attributed to the Temodar. We were told that this chemo really kicked his *ss, making him very weak and extremely fatigued as a result. I was so concerned that Ty's symptoms appeared as if he were drunk (which is indicative of Cerabellum issues) - but those same symptoms can be because he is totally groggy and just wiped out overall. The team agreed that that is what's going on with him. What a tremendous relief!
I didn't know what to expect over the course of this 28-day cycle because Ty has never been on this medication, but I was told today that we can expect Ty to remain at his worst for another few days. That the worst effects are usually seen within the week following the last dose - which was Monday. So, we hope to see some gradual improvement mid-week next week. Ty's bloodwork came back good, so he is not neutropenic and we don't have to keep him in a bubble. He also gained another 2/10ths of a pound (2 weeks in a row!). As you can probably imagine, I was smiling from ear to ear this morning and very happy to see his doctors for a change :)
Of course, in true Ty fashion, that feeling of relief just wasn't meant to last. Ty was restless during the entire car ride home. I just couldn't wait to lay down in bed with him and snuggle him to sleep when we got home. As soon as he laid down, though, he started wheezing. Bad. His upper respiratory congestion is getting worse and worse and Lou and I are totally on edge. We called Sloan for a prescription, but his doctor wanted to see Ty if his breathing is that bad. The medication I was requesting was something that was given to him to dry him up during our last hospital stay and it worked so well, but I was told that they only use it inpatient and an outpatient prescription just isn't an option. Argh! Lou and I created a make-shift suction with a giant syringe and a tube... we put a humidifier in his room... we gave him an antihistamine, and now we are just waiting. Listening to him struggle with every breath, and looking at each other with the question, "should we go?" The last thing we want to subject him to is another long car ride and an ER visit, but I'm just not sure where this is going to go. If he stays the same, I think we can stay home and just keep trying the homeopathic remedies like a steamy shower, but if this gets much worse we are going to have to go back to the hospital. I just feel gyped. We had a few hours of feeling good, and now we are filled with panic and concern again. I have a feeling I will be sleeping in a hospital bed tonight but I hope not. We'll keep you posted.
This may sound really stupid - but put VICKS on the bottom of his feet and then put socks on him. I read it once - somewhere and I use this trick everytime one of us is sick with a chest cold and it usually works - you can also rub some on his chest too - they used to have the vicks "cake" - (like a urinal cake) that you put in the shower to create vicks steam. Hope this helps - I am praying for you always!
ReplyDeleteUps & downs, highs and lows with Ty's fight against cancer.....when will your roller coaster life plateau and all of you be able to enjoy the little things in life like long dusty tee-ball games, days at the beach on a hot day and chocolate ice cream cones that drip all over!?! Hoping, praying and wishing for the best news for Ty as he comes out of this last wave of chemo. Hug your sons tight, love them with all your might & share each and every night telling them how much you love them! Your boys are truly blessed & lucky to have such loving, strong, focused parents willing to do anything to make them comfortable, happy and safe! Sending love from a friend you've never met in MN! Take care!
ReplyDelete