Peyton had an eye appointment and then chemo after that. His vision remained stable from last month's check-up so we are happy!! He hasn't lost any more vision and we remain hopeful this new treatment will continue to prevent that. Treatment went well and Peyton breezed right through it. We love the "easy weeks!"
Peyton is considered legally blind so accommodations will need to continue to be made at school. He will start kindergarten next year and will be a dual reader. He will be learning Braille but will learn to read regular text too. He will have work translated to Braille, and then regular print materials enlarged enough for him to use his vision to complete the assignments. It will be extra work for him and the teachers, but he'll be given lots of opportunities to be successful. We just hope he continues to love school as much as he does right now! The teachers at Trinity Lutheran have been so wonderful and play a large part in his love for school. I can't say enough wonderful things about the whole school and its staff members. They love kids there and it really shows. I can't believe I'll be sending him off to Kindergarten. Time flies too quickly....
Tuesday, March 27, 2012
Sunday, March 11, 2012
March 9th 2012 - Treatment #50
We got up to leave for Denver on Friday morning and Peyton was really sick. He'd been complaining all week of not feeling great but it was never too bad. It just seemed like he was coming down with a cold. (He'd finished a 10-day round of antibiotics a week earlier). Friday he was sneezing, coughing and just felt crummy. By the time we got to Denver, and they checked him over, we discovered he had an ear infection. After getting all hooked up for his chemotherapy treatment his fever spiked at 101. That meant doctors had to draw blood to make sure he didn't have any other infections near his mediport. It's a safety precaution that has to be done anytime his fever reaches 101 degrees. He slept through most of the three hour treatment, and then doctors gave him a shot of antibiotics and sent us home with more to give him for a week. Because his blood counts all looked good we didn't have to spend the night in the hospital so we were thankful for that! Doctors just told us to stay in Denver until midday Saturday to make sure the fever broke before heading home. He didn't feel good all Friday night, but by Saturday he was feeling a little better; no fever at least. His overall energy level has been low, but he slept most of the way home from Denver on Saturday and slept well once home.
We kept Landon with us all day during treatment and he did really good! The hospital has a wonderful place that kids/siblings can go and play and there are people who watch them for you. It's a giant play area with lots of toys and fun things to do. Landon spent a couple of hours down there and really had fun! He was such a great boy even though he missed his nap.
Still waiting on some of the other test results from March 2nd, but the MRI results came back and nothing has changed. All tumors still look the same - no changes in size. That's good and bad. Treatment hasn't been working, but at least the tumors are not continuing to grow larger. Bittersweet really.....
Peyton's vision will continue to be our driving factor. If his vision continues to get worse then we know we have to change things and do what's best to save that. We'll have another eye exam on the 23rd of this month.
Next week is Denver's St. Patrick's Day Parade. We will once again proudly join the Children's Tumor Foundation Group and walk with them, bringing awareness to NF in our bright green NF shirts! It's so much fun! Peyton's really excited. Afterwards we all meet up at the Spaghetti Factory for lunch. It's so wonderful to talk to other families that are going through their own battles with NF. Their stories are so inspiring and we realize that we aren't alone in this. It also connects Peyton with other kids who are facing challenges that most kids will NEVER have to go through. It's a wonderful connection to have and we look forward to it each year.
We kept Landon with us all day during treatment and he did really good! The hospital has a wonderful place that kids/siblings can go and play and there are people who watch them for you. It's a giant play area with lots of toys and fun things to do. Landon spent a couple of hours down there and really had fun! He was such a great boy even though he missed his nap.
Still waiting on some of the other test results from March 2nd, but the MRI results came back and nothing has changed. All tumors still look the same - no changes in size. That's good and bad. Treatment hasn't been working, but at least the tumors are not continuing to grow larger. Bittersweet really.....
Peyton's vision will continue to be our driving factor. If his vision continues to get worse then we know we have to change things and do what's best to save that. We'll have another eye exam on the 23rd of this month.
Next week is Denver's St. Patrick's Day Parade. We will once again proudly join the Children's Tumor Foundation Group and walk with them, bringing awareness to NF in our bright green NF shirts! It's so much fun! Peyton's really excited. Afterwards we all meet up at the Spaghetti Factory for lunch. It's so wonderful to talk to other families that are going through their own battles with NF. Their stories are so inspiring and we realize that we aren't alone in this. It also connects Peyton with other kids who are facing challenges that most kids will NEVER have to go through. It's a wonderful connection to have and we look forward to it each year.
Sunday, March 4, 2012
March 2nd, 2012
We spent a total of 10 1/2 hours at the hospital on Friday. Thankfully our little Landon spent all day with Leroy and Darlene. They all had fun together. It's so great for Landon to have his special time and attention too. Peyton had eye tests ordered by his eye docotor and an MRI. We literally didn't walk out of the hospital until almost 6:30pm. Peyton was supposed to start his new chemotherapy today but there just wasn't enough time to squeeze that in too. We will have to go back next week for that. We did, however, have time to meet with the oncologist and discuss this new plan. Peyton will be on another combination chemo treatment. One type is used to treat high grade tumors so it's a bit more aggressive and will hopefully work better than the others we've tried before. The side effects aren't too bad. Of course there are some but I think we'll manage. Just figuring out the right amount of medicine will be the key to him staying comfortable. He should be able to continue on as before; going to school and just getting to be a regular kiddo! Unfortunately the new treatment is scheduled for another year. That really makes us sad because we were hoping to possibly finish up before summer kicked in, but that's not the case. I've learned, during the last year and a half, that nothing is predictible with this disease. One never knows how the tumors are going to react to treatment. Even the oncologist has said there are no guarantees that any of this will work, but we all agree we have to try. His vision remains our biggest concern right now, but again the doctor told us she can't guarantee that he won't go blind. We remain hopeful and know doctors are all doing everything they can to prevent that, but I'm not going to lie, it's on my mind all the time and I worry - A LOT. I worry about my sweet Peyton, but have to balance that with keeping his life normal and not causing him to worry and stress. He's a wonderful kiddo that handles this all with such ease and a great attitude. As I've said before, each week he charms his way into people's hearts. He's touched so many people with his loving, mature and brave spirit. We will continue on.....we will go to all lengths, as a family, to support him and get the best care possible. We have such a great circle of friends and family around us lifting us up in prayers and spirit. We will handle this like Peyton does, with a smile!
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