Monday, March 28, 2011

Longboat Key Spring Break

Ally's Army has made it to Longboat Key Florida for Spring Break. Last year, my Dad bought a condo here on the beach. Last Spring Break my sister and her family went down to visit. I remember being so jealous and wishing I could go too, but as such, with Ally's condition, we could not. This year, we could! Ally is doing great and enjoying a much needed break from the cold weather. It has been about 85 degrees here (although today it rained, but we still had fun!)

We are getting spoiled by the beautiful beach and the pool and spending time together as family. I will let my pictures tell the story...I have been having fun using my camera again. Something that I have really not been doing for about the past year or so. I just wasn't feeling it....but now I am. So happy to share:

Looking for sand dollars and other shell treasures. This beach is known for great shells.

Carly is fascinated by the waves and water. She is so stinkin cute.

Showing her shell to Pa.

If you look closely you will see the sand all over her face.

Evan lost his front teeth within minutes of landing in Florida. The tooth fairy does come to Florida, we found out.

The kids love the hot tub and pool, which backs right up to the can see here.

Me playing with my camera. Trying to get the cool sun spots. Carmen will be proud of me. She is my camera teacher.....

The kiddlings with Barbara. They love hanging out with her and doing "shell projects" amongst other things.

Our neighbors and good friends the Grants are staying just down the road, so we have been enjoying time with them too. BONUS!

I will post more pictures later. I vowed to get these out here because I am making a "blurb" book of my blog someday. Someday might be in a few years, but I am going to do it!

Hope everyone is enjoying their week off of school.

Monday, March 21, 2011

Man and Woman of the Year Kick Off

A quick report on Ally. She finished up her swimming season about a month ago. And I don't think I realized quite how good it was for her. All of the chemo that she gets...well it settles in her joints and it is painful. Her ankles get very tensed up and she can't do simple things that she wants to do like play basketball with her brother or ride her bike. Lately, she has been struggling with the joint pain again. And the neuropathy in her feet. I felt so bad for her when she told me that she "wanted" to ride her bike, but it just hurt too bad. Every night Jerad will wrap both her ankles with ace bandages. I am not really sure what it does, but maybe provide some mental boost for her. It is just a bit shocking to me, because we haven't seen this joint pain since early last fall...right about the time she had started swimming. I think the swimming just kept everything flowing for her. Dr French even talked to us about the steroids never really leaving her system. He said you have to exercise to get the steroids out of the fat stores of her body. And now that she is not exercising as much, I definitely see the steroids are harder on her. They are building up. Well I just wanted to note that out here...for all those battling the disease, I like to share my little bits of knowledge.

Secondly, I am pleased to say that LLS has chosen Ally to be their "honored hero" for the Man/Woman of the Year campaign that kicks off this week. All of those candidates will be raising money with her in mind and her story/face will be used in the media pieces you will see in regards to the campaign. So tomorrow, I have to go speak to the candidates and tell our story....some of them don't even know what having leukemia is like. It is our job to try to tell them...inspire them. Which meant I had to try to collapse our whole last 22 months into a short speech for the kick-off event tomorrow night. It was a bit hard, because as most will know, I could (and have) written a book on the subject. Anyway, since I typed it all out for my own purposes..I thought I would share it here. No new information, but even as I wrote it I think I have almost forgotten how bad it was and how far we have come. And it caused me to yet again count my blessings and thank Ally's Army. Here it is...written as though it will be spoken and not with perfect grammar, etc. Hopefully I can deliver it with strength and not sorrow.

Our daughter Ally was diagnosed with ALL leukemia, high risk, in May of 2009. She was 7 years old. A lot of people ask how we knew that Ally was sick. To be honest, our lives were a bit of a blur at that time. Just two months prior, I had lost my mother to metastatic bladder cancer at the age of 60. We were reeling from that loss when Ally decided that she didn’t want to go to school anymore. Likewise, she would run off of the soccer field crying. We dismissed it as grief for the loss of her Grandma and kept pushing her on. We went on a family vacation to try to “heal” from 15 months of battling cancer with my Mom. Ally sat in a chair by the side of the pool while her brother and sister played. We knew something was wrong and had even made an appointment to see the doctor. We were patiently waiting for our drs appointment time to come up. And I was honestly thinking that she had mono.
One day Ally could no longer get home from the bus stop, I called the dr and demanded to be seen that day. We were sent to Dayton Children’s for bloodwork and told to stay and wait for the results. Within an hour, we knew our first born daughter had leukemia Her hemoglobin was at 4 (usually 12) A bone marrow test the next day would confirm what kind. The day is a blur….much of the next year would be a blur. I remember my husband using his phone to google survivability rates of childhood leukemia.
Our nightmare was confirmed the next day when Dr Broxson did a bone marrow aspiration on Ally. She had Acute Lymphocytic Leukemia. We knew enough at that point to know that this is the “good leukemia” It had a higher cure rates than others. However over the course of the first month, we found out that Ally’s leukemia was high risk. A further test showed she would have to do a year of intense chemotherapy (instead of the typical 6 months). She would also have to undergo cranial radiation. 8 doses of radiation right to her brain. Leukemia likes to hide in the spinal fluid and around the brain and we had to do what we could to prevent a reoccurrence.
The chemotherapy was awful. It hit her hard. After being in the hospital for a week….having several blood transfusions and chemo…she was sent home. It was so scary to bring her home. She literally laid on the floor or the couch not moving. Her jaw hurt so bad (a side effect) she would not eat or even drink. After a few days of this, we heard her go down in the bathroom one morning. She had passed out from dehydration. My husband scooped her up, threw her in the car, and was at Dayton Children’s in 14 minutes.
Her chemotherapy continued for one whole year. Every week. Sometimes more. We lived at the hospital…spending something like 60 nights there. Including birthdays, anniversaries, and even Christmas. Most of her time spent there, was due to the side effects of the intense drugs they were giving her to save her life. She got fevers. She got mouth sores so bad she would go on a morphine pump for a week at a time. She couldn’t even talk to us because it hurt so bad. She got pancreatitis. She was in a wheelchair at times because her joints hurt so bad she couldn’t walk. We dealt with vomiting, constipation, and lack of sleep for most of the year. We were forced to be inside our house, not allowed to go to restaurants, shops, parties, etc due to her immune-compromised position. We relied on friends and family to help us with our other two kids… our son Evan, now 6 and our baby girl Carly, who is now 3.
Ally is actually still undergoing chemotherapy. She takes a little bit at home every day and still goes to the hospital one day a month. She is still tested all of the time. Her treatment should be over in fall of 2011 after 28 months of treatment. She will be followed for years after that…to determine the effects of all of the treatment on her body.
The fact of the matter is that we made it through. Within a week of her diagnosis, we had formed an Army. Ally’s Army. This Army carried us through our darkest days…running our errands, making food, taking care of our kids. We heard about the LLS Light the Night Walk. We wanted to have all of our Army walk behind Ally on a fall night that year. To show her our support. That night, we had and incredible showing of 400 people that walked behind her. And we amazingly raised $40,000 for LLS. What got us through the tough situation was trying to make something good come from something so bad. It was healing.
Similarly, my Dad wanted to do something in Ally’s honor. He was not a scientist nor a doctor, so he knew he could not do anything in that regard. But one thing he knew was that he was good at raising money. He signed up for the Man of the Year competition and surpassed everyone’s expectations. With a team of Ally’s Army to back him, he raised more money than anyone in the history of the program. He raised over $430,000 with the help of over 500 donors and sponsors. He became the National Man of the Year, from little old Beavercreek Ohio. His face, along with that of Ally, is now on the front of the LLS media and the National webpage.
So this year, when Lisa asked if Ally would like to be the Honored Hero for this LLS campaign I was honored. I was touched. I jumped at the chance to help again. Because Ally is such an inspiration to so many. Her strength and her positive attitude in tough times….well she is one tough little girl. And if she has already inspired so many, I hope that she can also inspire you. To help raise the funds to further the research to try to put an end to this disease. For all the survivors and for all of those currently battling the disease and for those who have yet to be diagnosed. The time to do something is now. And for all of those people out there…. I thank you in advance for all you will do.

Sunday, March 20, 2011

She likes her hair...

I will write more tomorrow! But quickly wanted to share a piece of Ally's schoolwork. Read the second line. She is so happy to have hair again.

- Posted using BlogPress from my iPhone

Sunday, March 13, 2011

Spinal is clear!

Ally did great! The spinal fluid was clear! Praise to God and thank you so much for your continued prayers for my sweet Ally.

Dr French actually did her spinal today. He was very slow and meticulous and gave her a little extra medicine this time as she is getting bigger. I think it ended up being the best spinal that she has ever had. We didn't have any vomiting or increased heart rate issues upon completion and she only cried a very little when he put the needle in. We were so grateful.

One crazy thing is that the hospital was so sick that they wouldn't even let her up to the normal area where she gets her spinals. I guess it was filled with RSV and flu patients. The whole hospital was full of it, so they decided to keep her down in surgery on the 2nd floor. They did her spinal and everything in a pre-op waiting room for patients. It was a little strange, but we made due and I was especially thankful that they chose to protect her from those germs. We still had our regular nurses...we had Alyssa...and she is an ALL survivor who was treated at Children's. She is now a RN. I love that. The compassion just shines right through her.

We decided to take a little video of Ally about 10 minutes after her procedure. I thought she would think it is funny to see herself all drugged up. I decided to share with you not super exciting, but this is what she is like after her spinals.

Click here for video:

Again, we could not be more thrilled with the results of her test. Her bloodwork also looked great with no change in her daily chemotherapy medications. We are currently pushing through another steroid week. The power of prayer is awesome.

Tuesday, March 8, 2011

In like a Lion.....

I forgot I wanted to say one more thing about Ally's curls. Many of the kids, (and adults too for that matter) have changes in their hair due to the chemotherapy. We always joke that Ally got the most expensive perm ever. But I really wanted her to have curls. I remember Christmas Day 2010, when we were in the hospital. Rough day. This beautiful little girl named Julia came to visit the patients that were there. She was a cancer survivor (kidney cancer). She was seriously the cutest little girl ever and her hair just hung in ringlets all around her face. I remember telling her Mom, Emily, that if I could just have that curly hair one day with Ally I would be so pleased. I think my prayers were answered on that one. And now Ally gets more comments on her hair than ever.
Things are settling back into normal around here. Well normal as far as sickness goes. I believe everyone went to school and met all their obligations last week. I don't think that had happened in our family since before Christmas. It was a good feeling. Believe it or not, Ally is still nursing a sore throat and cough though. Seems like you shouldn't really have a sore throat for two straight weeks so I think we will be talking to Dr Broxson about this on Friday. Maybe they can do a quick strep test.

Every time we go in for an appointment, we go through a huge checklist of questions from the nurse before we can get started. They ask everything...was there a rash, stomach ache, bumps, bruises, coughs, colds, bodily functions, etc etc. They always ask if there was a fever, and I always could that be? Wouldn't I have been in the hospital if so? But, for the first time, we will say yes to this question because she had a fever (well less than 101) but they didn't know about it.

Ally's spinal is just a few days away (Friday). As you can imagine, we spend a lot of time praying and hoping for the best results ever. It is nervewracking. Crazy mom that I am I take this "cancer healing stone" that her Aunt got for her and rub her with it before bed. Praying, singing, always wishing for her to be healed of the cancer.

This time of year is really rough on me. I lost my mom two years ago on March 15. I can play back the days leading up to her death like a record and that is just what I do. I have to purposefully make myself stop thinking about it. Especially when I try to sleep. It is just so hard to see the suffering of a loved one...and for me, my Mother, it is just still so traumatic for me. My huge problem, is that I never really had time to grieve and deal with my loss...because I was thrown into the world of leukemia and quickly shifted gears into doing everything in my power into saving my child.

But now, I must deal with it. For the past few weeks, I have been going through her clothes. It shouldn't result in so much agony for me, but it does. It is horrible and hard and I just never seem to get it done. I have loaded up my car several times. I find there are so many things that I just can't let go of. I don't know why. I guess it is all part of the process...and I am doing it now...and I am proud of myself for doing it. After two years. I guess I have been kinda busy though.....
Today, it was such a nice day. I love the Springtime coming (except now for those aforementioned feelings I deal with). So after a couple hours of more clothes sorting, we took a break and enjoyed all the natural beauty that Fox Hill has to offer. We fed Ma's ducks. And sometimes I think my Mom is walking right there with us. And today she was. I just know it.

Thanks for thinking of my family as we get through another Spinal Tap Friday.

Wednesday, March 2, 2011

Ally's Curls

Many days I get asked the same question: "Was Ally's hair always curly like that?" Sometimes, it takes me back, because if you knew Ally before leukemia, you knew she looked like this.....

But the fact of the matter is, many of you, arguably the majority of you, didn't know Ally before her diagnosis. With the diagnosis, we formed Ally's Army, and now there are so many new people in our lives. Sometimes, people who even did know her ask me. And I can't blame them either because she really hasn't had hair since her first grade year. This is what it looked like about a month before diagnosis...she was hunting Easter Eggs at my Dad's house. You will see it is pretty darn well straight. It had a slight wave to it that required me to blow dry it. Wow. I just realized I haven't had to blow dry her hair in almost two years. I guess just a small bonus for me, because I hated doing that.
Here is a picture that I took of her curls last night out on our deck. The sun was shining right on her, so not sure that color is even accurate, because most people tell me that she has also lost her red hair and it is now more sandy brown. Oh...and I made her wash it right before this. You should see her when she wakes up in the morning. All I can compare it to is Albert Einstein. It is C-R-A-Z-Y. I don't even really know how to handle it much and if you know Ally she doesn't really care what it looks like.

But no matter what, we will take it. Because for so long, it was like this. And she is just so much healthier looking now. Even with her chipmunk steroid cheeks.

Just another example of how far we have come.
Please be in prayer for our girl Ally. She has another spinal tap next Friday...March 11. With every spinal tap she gets she is one more closer to being done with her treatment. But with every spinal we also allow the fear to creep back in and haunt us. We never want to go back.
Dear Cancer....we have had enough of you already. Please stay clear of our family and all who surround us. Thank you.
Thanks for your prayer.