It's been two years since the night we found out that Evy had a brain tumor- a day that starkly divided our lives into a "before" and "after". We coincidentally had a routine MRI today which again showed no evidence of disease.
When we were presented with Evy's diagnosis of AT/RT, all of the survival rates were based on children two years out from diagnosis. Two years seemed like a lifetime. We were pretty sure, based on the evidence in front of us, that we would be pretty lucky if we got some more months with our baby girl.
We got lucky: an amazing neurosurgeon, a top-notch oncologist, a new protocol that had just started producing some survivors, a lucky break when we found out that Evy did not have chromosomal issues affecting her ability to fight tumors, and a cancer that has not returned.
Two years might as well be ten. I know, for me, I barely remember life before this fight. For now I consider myself in some ways to be a lucky mother. I get to be a mommy to the two sweetest little girls I have ever met. I know how fragile life is. Our family is rock solid.
I hope to continue on this lucky streak and have one of the first blogs in which a teenaged AT/RT survivor is shown in all her glory. I hope for Evy that she continues to heal from her wounds as beautifully as she currently is. I hope that Stella and Evy get to grow up together forever, seeing that they are best, best friends. Hope is the best elixir for fear. I have plenty of fear, but a boatload of hope.
Thank you for supporting us in our journey. xoxo Jill
Thursday, November 3, 2011
Tuesday, August 16, 2011
8.16.11
We had another uneventful/wonderful MRI this morning. No Evidence of Disease still for our baby girl. Phew!
We have had a really nice summer. Spent time at the beach with family, spent a lot of time gardening in our front-yard-turned-veggie-patch. Evy's taste for food is beyond my expectation for a kid who had a feeding tube for a year. She basically eats everything I used to put in her feeding tube but in its non-liquified state. A three-year-old cancer survivor who regularly requests kale salad topped with quinoa? Makes my heart pitter-patter.
She is still doing horse therapy once a week, and Stella has been getting her own lessons for the last couple of months, too. Makes all of us so happy. I have also been volunteering at the ranch once a week so the horses and their amazing owners, Rachel and Boris, have really captured our hearts and made us love where we live even more. Horse therapy has been incredible for Evy. Before she started she could not sit on the potty because her core muscles on her stroke-affected side were so weak. Now she is potty trained and super-comfy on her potty. Very good.
We made a quick trip a couple of weeks ago to Boston to have a follow-up to radiation. Had a neuro-psych and met with our Boston team. It was like a very happy family reunion. Everyone is very happy with Evy's lack of disease and progress.
That's it for now. Hopefully this blog will just be me coming on every three mos. with a little update and more news of NED. Take care, Jill
We have had a really nice summer. Spent time at the beach with family, spent a lot of time gardening in our front-yard-turned-veggie-patch. Evy's taste for food is beyond my expectation for a kid who had a feeding tube for a year. She basically eats everything I used to put in her feeding tube but in its non-liquified state. A three-year-old cancer survivor who regularly requests kale salad topped with quinoa? Makes my heart pitter-patter.
She is still doing horse therapy once a week, and Stella has been getting her own lessons for the last couple of months, too. Makes all of us so happy. I have also been volunteering at the ranch once a week so the horses and their amazing owners, Rachel and Boris, have really captured our hearts and made us love where we live even more. Horse therapy has been incredible for Evy. Before she started she could not sit on the potty because her core muscles on her stroke-affected side were so weak. Now she is potty trained and super-comfy on her potty. Very good.
We made a quick trip a couple of weeks ago to Boston to have a follow-up to radiation. Had a neuro-psych and met with our Boston team. It was like a very happy family reunion. Everyone is very happy with Evy's lack of disease and progress.
That's it for now. Hopefully this blog will just be me coming on every three mos. with a little update and more news of NED. Take care, Jill
Wednesday, July 6, 2011
Happy 3.5 birthday, Evy and Stella!
Two happy, healthy girls celebrate a summer half birthday! Woohoo!
Tuesday, May 10, 2011
Thursday, April 14, 2011
Horse Therapy
We are extremely excited in the Carroll household to get Stella and Evy into horseback riding. Horse therapy is great for kids with hemiplegia for building strength, trunk control, helping with gait patterns, more excuse to get "righty" to do things, and self-esteem/confidence. Besides that, there is an indescribable feeling of calm and peace that envelops us at the ranch. There is a ranch near our home which specializes in horse therapy for special needs kids. The instructor, Rachel, is a dynamo. We went on Sunday to check out the ranch and to get to know Rachel. Yesterday was Evy's first appointment for therapy. She had been on a horse only once before, when we went on an hour-long ride at Deep Creek Lake last fall.
Rachel is a firecracker (kind of like Evy!) She was blown over by how comfortable Evy was on the horse and how enthusiastically she follows instructions. Evy got on the horse with Rachel and rode around... then Rachel had Evy ride by herself on the horse, and then the next time I look Evy is standing on the horse while it is walking with just Rachel and her assistant holding her legs.
They were also amazed how a child with hemiplegia consistently reaches and tries with her affected arm and hand. Thank you, Alabama.
Next week Evy will be upgraded to a faster horse! Go, Evy, go!
Evy will be going weekly. Rachel squeezed her into her schedule. I asked if Stella could have her own lessons, too, because I don't want her to feel sad. She loves horses just as much as Evy. Rachel will try to fit Stella in soon. In the meantime, Stella will get on at the end of therapy for a few minutes. We also take carrots and apples to feed the other horses while Evy is in therapy and afterwards, too. Stella fell in love with Tiger Lily, a beautiful brown mare.
There has to be a Make a Wish for siblings. Just an idea!
Pictures soon.
Rachel is a firecracker (kind of like Evy!) She was blown over by how comfortable Evy was on the horse and how enthusiastically she follows instructions. Evy got on the horse with Rachel and rode around... then Rachel had Evy ride by herself on the horse, and then the next time I look Evy is standing on the horse while it is walking with just Rachel and her assistant holding her legs.
They were also amazed how a child with hemiplegia consistently reaches and tries with her affected arm and hand. Thank you, Alabama.
Next week Evy will be upgraded to a faster horse! Go, Evy, go!
Evy will be going weekly. Rachel squeezed her into her schedule. I asked if Stella could have her own lessons, too, because I don't want her to feel sad. She loves horses just as much as Evy. Rachel will try to fit Stella in soon. In the meantime, Stella will get on at the end of therapy for a few minutes. We also take carrots and apples to feed the other horses while Evy is in therapy and afterwards, too. Stella fell in love with Tiger Lily, a beautiful brown mare.
There has to be a Make a Wish for siblings. Just an idea!
Pictures soon.
Monday, March 28, 2011
3.28.11: Back from Alabama!
We arrived home late last night from three weeks in Birmingham, Alabama, where Evy underwent Constraint Induced Movement Therapy (CIMT). Evy's left arm was put in a cast in order to make her use her right arm. Each day, Evy would have three hours of therapy, focusing on a lot of picking objects up, grasping, pinching, and strength building. We would then have homework each night to keep building on what we worked on in therapy. She did really well, and never complained about having her good arm casted, even though this meant that she needed help with everything from eating to just standing up from the floor. Mostly, we are all just worn out, and have missed home, our beds, home-cooked meals, etc.
Evy made good progress in the program, but her recovery will definitely be a long-term effort, which is typical with stroke recovery. It is difficult to know how quickly she will progress, as there are often spontaneous improvements, when the brain basically makes a connection to the arm and "remembers" how to use part of it. This has happened before with Evy, when she began to be able to move her upper arm. Evy has not yet regained her grasp, although she did show signs of starting to open and close her hand, it's just not yet something she can do completely voluntarily. We also worked a lot on range of motion and weight bearing. She needs to gain strength in her shoulder, triceps, and wrist, as those muscles have weakened considerably during their time of non-use. That said, she made amazing progress towards recovery. She uses her arm and hand in ways that she never did before. Within two days of treatment she had made more progress than the last year and a half since she had the stroke. We brought her cast home, as well as some specialized braces, so we will be spending lots of time incorporating exercises into every day life. We have orders for a pretty hard-core home program. They trained us to do it all with Evy ourselves so we don't lose the progress we've made and so we can keep sending signals to her brain that her right arm and hand are there and capable of movement. We will be in the cast two days a week at home and reminding Evy to use righty as often as it is possible/appropriate. It's going to be pretty intense.
We enjoyed our time in B-ham, and managed to do lots of tourist stuff, including the zoo, the Civil Rights park and the 16th Street Baptist Church, the botanical gardens, the Vulcan monument, the old Sloss steel furnaces, and the historical district. We also enjoyed the weather, which was in the 70's and sunny most of the time. A bit of a shock to be back in 40-degree weather. We made some great friends at Ronald McDonald House who we already miss as well as getting to see some old buds in their own stomping ground of Birmingham! A successful trip.
Evy made good progress in the program, but her recovery will definitely be a long-term effort, which is typical with stroke recovery. It is difficult to know how quickly she will progress, as there are often spontaneous improvements, when the brain basically makes a connection to the arm and "remembers" how to use part of it. This has happened before with Evy, when she began to be able to move her upper arm. Evy has not yet regained her grasp, although she did show signs of starting to open and close her hand, it's just not yet something she can do completely voluntarily. We also worked a lot on range of motion and weight bearing. She needs to gain strength in her shoulder, triceps, and wrist, as those muscles have weakened considerably during their time of non-use. That said, she made amazing progress towards recovery. She uses her arm and hand in ways that she never did before. Within two days of treatment she had made more progress than the last year and a half since she had the stroke. We brought her cast home, as well as some specialized braces, so we will be spending lots of time incorporating exercises into every day life. We have orders for a pretty hard-core home program. They trained us to do it all with Evy ourselves so we don't lose the progress we've made and so we can keep sending signals to her brain that her right arm and hand are there and capable of movement. We will be in the cast two days a week at home and reminding Evy to use righty as often as it is possible/appropriate. It's going to be pretty intense.
We enjoyed our time in B-ham, and managed to do lots of tourist stuff, including the zoo, the Civil Rights park and the 16th Street Baptist Church, the botanical gardens, the Vulcan monument, the old Sloss steel furnaces, and the historical district. We also enjoyed the weather, which was in the 70's and sunny most of the time. A bit of a shock to be back in 40-degree weather. We made some great friends at Ronald McDonald House who we already miss as well as getting to see some old buds in their own stomping ground of Birmingham! A successful trip.
Tuesday, February 22, 2011
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