Sunday, October 31, 2010
10.31.10
Click here to see an article published about the upcoming fundraiser in our local paper. When I showed Evy the picture of our family in the paper, she focused on it for one hot second before pointing out the horsey down below. What a sweetie. (:
Saturday, October 30, 2010
10.30.10
Evy got a fever Thursday afternoon. Brian took her up to the hospital and they got her on the routine antibiotics right away. Her cultures did not show any infection (yay!) so we just had to wait for her counts to come up to at least 250. Luckily they shot up overnight to 1000, so we just got home. Stella and I were staying at RMH for the duration of her stay. We are pleased that it was a short stint. The girls missed the Clinic Halloween party but luckily they forgot that it was going to happen on Friday. That is the beauty of this age. They did dress up in their costumes on Friday and charmed the nurses as usual. Unfortunately, I forgot Brian's camera so we didn't get any pictures of that.
We did get some very disheartening/scary news while we were there. Before each round of chemo that uses a certain chemo drug that can harm the heart we have to have an EKG to check her heart to make sure it's safe to do it again. We had it scheduled for this coming week but Brian smartly had it ordered so we could get it all done while in-patient. Each EKG has come back normal until this one. Evy's heart muscle has been permanently damaged by chemo. This will start a new line of treatment for her and perhaps a lifetime of heart medication. We will have to consult a pediatric cardiologist and luckily we know a great one (her daughter had medullablastoma and was also a patient of our oncologist). We knew that chemo can have awful side effects, but it is a tough pill to swallow. As Brian said earlier, at least she is A-L-I-V-E (spelled out so the girls wouldn't know what we were saying.)
So now our counts are back up and we have a week to enjoy before our final round of chemo.She will have just one clinic visit for hemoglobin on Tuesday. On Sunday night we will get to enjoy the fundraiser put on by our fabulous friend Andie. Her good deed has inspired other good deeds and our heart has been warmed by the outpouring of support. You know who you are, Monkees! Thank you.
We did get some very disheartening/scary news while we were there. Before each round of chemo that uses a certain chemo drug that can harm the heart we have to have an EKG to check her heart to make sure it's safe to do it again. We had it scheduled for this coming week but Brian smartly had it ordered so we could get it all done while in-patient. Each EKG has come back normal until this one. Evy's heart muscle has been permanently damaged by chemo. This will start a new line of treatment for her and perhaps a lifetime of heart medication. We will have to consult a pediatric cardiologist and luckily we know a great one (her daughter had medullablastoma and was also a patient of our oncologist). We knew that chemo can have awful side effects, but it is a tough pill to swallow. As Brian said earlier, at least she is A-L-I-V-E (spelled out so the girls wouldn't know what we were saying.)
So now our counts are back up and we have a week to enjoy before our final round of chemo.She will have just one clinic visit for hemoglobin on Tuesday. On Sunday night we will get to enjoy the fundraiser put on by our fabulous friend Andie. Her good deed has inspired other good deeds and our heart has been warmed by the outpouring of support. You know who you are, Monkees! Thank you.
Thursday, October 28, 2010
Wednesday, October 27, 2010
10.27.10
Hello all! We are doing well. Evy hasn't been nauseous in a couple of days, so that is wonderful. In addition to tube feedings, we have been working to get Evy to eat more food by mouth. She is so sweet. We told her that Dr. Horn wants her to eat more so that she can get her tubie out forever. So she does her best and when she actually gets food in her stomach she yells, "tummy!" and slaps me five. Every time. So cute! She takes very small bites and doesn't remember how to swallow larger amounts of food. She spits a lot of things out and claims that they are hot. I have to remind myself that her mouth tastes awful from chemo, so a lot of food might not taste good. She still loves smoothies, so today she and Stella shared three. Tomorrow her Speech therapist is coming and I will get some pointers about how to get her to use her molars more and swallow.
Dr. Horn is hoping that her tubie can come out about two weeks after treatment ends. Wouldn't that just be lovely? We are all so excited.
The other morning when Evy had just woken up and I was changing her diaper she stretched both arms above her head. It was the first time her right hand had gone over her head in a year. She and I both realized what she had done and did a little happy dance over it. She can't do it standing up yet since her scapula isn't supported that way. Her OT thinks that this is fabulous, fabulous, fabulous.
Her counts are just about bottoming out so we are doing the "please, no fevers" finger cross. We do have a Halloween party/Blood transfusion scheduled for Friday at the Clinic. Nothing like a bunch of kids in a room around Evy when she has no immune system to make my blood pressure rise. But seeing the girls in their costumes will balance that out a bit. Can't wait.
That's about it. Is that seriously week 50 I see peeking at me from around the corner? This is unreal.
If you haven't heard about the fundraiser for us on November 7, check out the sidebar. We are really looking forward to it! Our friend is raising money for our trip to Alabama in March for Constraint Induced Therapy. We could basically buy a mini-van with the money it costs for three weeks of OT. And we may have to go more than once over the next several years. But who can put a price on being able to use your hand? Nothing but the best for this baby girl. (-;
Dr. Horn is hoping that her tubie can come out about two weeks after treatment ends. Wouldn't that just be lovely? We are all so excited.
The other morning when Evy had just woken up and I was changing her diaper she stretched both arms above her head. It was the first time her right hand had gone over her head in a year. She and I both realized what she had done and did a little happy dance over it. She can't do it standing up yet since her scapula isn't supported that way. Her OT thinks that this is fabulous, fabulous, fabulous.
Her counts are just about bottoming out so we are doing the "please, no fevers" finger cross. We do have a Halloween party/Blood transfusion scheduled for Friday at the Clinic. Nothing like a bunch of kids in a room around Evy when she has no immune system to make my blood pressure rise. But seeing the girls in their costumes will balance that out a bit. Can't wait.
That's about it. Is that seriously week 50 I see peeking at me from around the corner? This is unreal.
If you haven't heard about the fundraiser for us on November 7, check out the sidebar. We are really looking forward to it! Our friend is raising money for our trip to Alabama in March for Constraint Induced Therapy. We could basically buy a mini-van with the money it costs for three weeks of OT. And we may have to go more than once over the next several years. But who can put a price on being able to use your hand? Nothing but the best for this baby girl. (-;
Saturday, October 23, 2010
10.23.10
Evy finished the chemo portion of round number 16 yesterday. Once we recover from this one we only have one more round to go. Really hard to believe! I just can't wait for the suffering to end. And I hope it will be her last chemo EVER. Yesterday she could not keep any food down but today she has done okay. Tomorrow we are going to see Disney on Ice with Growing Hope and the girls are very excited. Stella keeps insisting that mommy will be ice skating, too.
Yesterday marked one year since she had her stroke while going down the steps. We are not the same people we were one year and two days ago. As soon as autumn began I started having flashbacks to everything that happened last year. I have finally been able to listen to the kid's cd that we were listening to that month in the car before everything happened. Now we are listening to it all of the time and when I hear the song that I played on repeat to keep my eyes on the road for the hour + trip back to the hospital when Brian called to say she had a tumor I don't even cry. Halloween will be strange because that was the day when we realized the doctors were wrong.. no fracture, definitely a stroke. I am so relieved and thankful that she is here with us one year later. AT/RT is a beast and we have been extremely lucky. We are so thankful for the health of both of our girls!
Than you for sticking with us and reading our story. It is nice to know that there are people out there who care about us!
Yesterday marked one year since she had her stroke while going down the steps. We are not the same people we were one year and two days ago. As soon as autumn began I started having flashbacks to everything that happened last year. I have finally been able to listen to the kid's cd that we were listening to that month in the car before everything happened. Now we are listening to it all of the time and when I hear the song that I played on repeat to keep my eyes on the road for the hour + trip back to the hospital when Brian called to say she had a tumor I don't even cry. Halloween will be strange because that was the day when we realized the doctors were wrong.. no fracture, definitely a stroke. I am so relieved and thankful that she is here with us one year later. AT/RT is a beast and we have been extremely lucky. We are so thankful for the health of both of our girls!
Than you for sticking with us and reading our story. It is nice to know that there are people out there who care about us!
Monday, October 18, 2010
10.18.10
We're back and back into reality!
Last week we got to get away for a vacation we planned well in advance. It served as a benchmark to get us through these later stages of chemo and gave us something to look forward to as we soldiered along. There is a wonderful charity called Believe in Tomorrow Children's Foundation which has several houses for families like ours to get away to and enjoy during and after treatment to spend time together as a family and unwind. We spent last week at their home in McHenry, MD on Wisp Mountain. Before we left we told the girls all about the "mountain house" we were hoping to go to. As long as Evy didn't get any fevers we would be able to go. I canceled all unnecessary engagements (PT/OT/Speech/babysitters) and kept the girls in my protective bubble. We made it! How funny to pack, cook, and plan for a trip that you're not sure you're even going to take until the last minute.
I will have Brian upload some pics of our adventures soon. We were there at the perfect time of year to view the beautiful fall leaves. Our house sat atop the mountain overlooking Deep Creek Lake- a stunning view. The stress that has accumulated in us just melted away (of course, it's back, but hey, we had a week off for a change!) We took the girls to ride horses for the first time, saw a beautiful waterfall, took paddle boat rides, and delighted Evy with going to as many stores as she wanted. The weather was unseasonably warm for most of our trip. In a word- perfection.
Evy is doing so well. She is practicing going up and down the stairs using the child-sized railings we installed for her. She's doing a great job. She is truly her mother's daughter- obsessed with her "bookies" and wants to read books all of the time. She is smart as a whip. A whip! We just love our little angel.
Now Evy is off with Daddy beginning her sixteenth round of chemo. Heaven help us. We can make it. Only six more weeks.
Last week we got to get away for a vacation we planned well in advance. It served as a benchmark to get us through these later stages of chemo and gave us something to look forward to as we soldiered along. There is a wonderful charity called Believe in Tomorrow Children's Foundation which has several houses for families like ours to get away to and enjoy during and after treatment to spend time together as a family and unwind. We spent last week at their home in McHenry, MD on Wisp Mountain. Before we left we told the girls all about the "mountain house" we were hoping to go to. As long as Evy didn't get any fevers we would be able to go. I canceled all unnecessary engagements (PT/OT/Speech/babysitters) and kept the girls in my protective bubble. We made it! How funny to pack, cook, and plan for a trip that you're not sure you're even going to take until the last minute.
I will have Brian upload some pics of our adventures soon. We were there at the perfect time of year to view the beautiful fall leaves. Our house sat atop the mountain overlooking Deep Creek Lake- a stunning view. The stress that has accumulated in us just melted away (of course, it's back, but hey, we had a week off for a change!) We took the girls to ride horses for the first time, saw a beautiful waterfall, took paddle boat rides, and delighted Evy with going to as many stores as she wanted. The weather was unseasonably warm for most of our trip. In a word- perfection.
Evy is doing so well. She is practicing going up and down the stairs using the child-sized railings we installed for her. She's doing a great job. She is truly her mother's daughter- obsessed with her "bookies" and wants to read books all of the time. She is smart as a whip. A whip! We just love our little angel.
Now Evy is off with Daddy beginning her sixteenth round of chemo. Heaven help us. We can make it. Only six more weeks.
Tuesday, October 12, 2010
10.12.10
The blog will be quiet this week since we are celebrating high counts in a different way than usual... back this weekend with a full report. In the meantime, picture Evy, Stella, Mama and Dada enjoying plenty of sunshine and laughter. (-:
Friday, October 8, 2010
10.8.10
Evy's counts are still low but they are on their way up. Her nausea has subsided. Life is good!
Friday, October 1, 2010
10.1.10
Happy October, our last full month of treatment..
News article from this weekend's Growing Hope walk: http://www.connectionnewspapers.com/article.asp?article=344640&paper=73&cat=104
Also, a short video a friend of ours took of Evy dancing at the event:
News article from this weekend's Growing Hope walk: http://www.connectionnewspapers.com/article.asp?article=344640&paper=73&cat=104
Also, a short video a friend of ours took of Evy dancing at the event:
Subscribe to:
Posts (Atom)
