Valentine Party Day

Wow it doesn't take long to go downhill. Two days into this cycle Ally had had two days worth of chemo. In this phase, they do it back-to-back like that. During the night at the beginning of the third day she could no longer sleep. She was having horrible joint pain primarily in her legs, hips, and jaw. She could not get comfortable. Her back was also sore from the spinal tap. Once again, there wasn't too much we could do except try to console her and give some pain medication. It was a long night. By that morning, we realized she really couldn't walk without being in a great deal of pain and tears. Jerad was carrying her 70 pounds around but that is hard.

I was sad because we had three Valentine parties that day for all the kids. I didn't want Ally to miss it. She had spent f.o.r.e.v.e.r making her box/Valentines. For me, Valentines was the best "school holiday" because I loved the mail exchange and sweet treats. I knew she couldn't walk into the school. I was asking her what she wanted me to tell them....have the teacher pass out her Valentines....or wait til she was better and she could pass them out then....and then in a very matter of fact voice she said "I want to go" I was really shocked she wanted to go, but I remembered that I thought the school had a wheelchair. A few phone calls to the school office and they had very nicely set everything up for me with a special back door entrance.

The school nurse told me that she went down to Ally's class and told them she was coming, but in a wheelchair. She said the whole class broke out into an applause and it was quite touching to see. Once we got there, she lasted about a half an hour and then she was done. Done to the point that she cried most of the way home because it hurt. But I was so proud of her for going and trying to make the best of it.

We got my Mom's old wheelchair for her and she used it to get around the house most of the day. I also upped her medicine to some Vicodin and that really seemed to help. By the end of the day, she was feeling well enough that she asked to go to the WSU game and it was pretty simple to wheel her in and wheel her out. Her ANC was high so we decided to try it. Her little friends were sweet and came and sat with her at the game. She made it the whole time!

I do think (hope) that this pain will be only temporary. The vincristin does this to kids joints and we have seen it happen to her before, although never to this point. I think it should go away within a couple of days. And her next scheduled date is not until Friday...a week from now.

Day 1, done...day 2 coming up.

After a very long day at the hospital, Ally got home about 6pm. Everything went pretty well....she was a bit tearful during the spinal and yelling that it hurt. But then about two minutes later she asked if they had given her the shot in her back yet. She just doesn't remember. That is some good medicine that makes her forget the whole thing. Wish I could take some sometimes. She pretty much took a nap right after the procedure, which really helped her to stay down and avoid the spinal headache. Dr French actually inverted her (feet higher than her head) to let the chemo go straight to her brain and also to prevent the spinal headaches. I was only there for about half the day and then set off in the snowstorm to collect my other two children. We got six inches of snow while Ally was doing all her stuff. Thanks to my sister for coming thru in a pinch for us and watching Evan.

While we were there, and before her spinal, Ally passed out some Valentines to some of her friends. We went over to the inpatient unit and caught up with a few friends. While we were there, we found out about a little boy Ethan who had ALL four years ago and it has relapsed. I actually think I met him recently at an event. There was also another little girl there...same thing-- ALL relapsed. This bothers me so much I can't even incorporate the words to describe it. It is our biggest fear...if it relapses you have to do all kinds of stuff including a bone marrow transplant and chances of survival go down. So I have had a pit in my stomach all day about all of this. And another one of her friends, Davey, is having a bone marrow to see what is going on with him...which has me worried. What happened to all the good statistics on ALL that we heard about?...it doesn't seem like it is holding true for our hospital family. I guess we just have to keep praying and praying and try not worry. It is ultimately in God's hands and her path is already chosen.

She goes back in tomorrow at 10am for the double shots in the legs. I do not know why they can't do it all in the same day....but there is some research/reason behind it so I do not ask. Whatever they say, we do.

A funny story...Jerad took Ally to a communion meeting at church a couple weeks ago (she gets her first communion in May). Everyone had to go around the room and say someone/something they are thankful for. Most of the kids said the pat answers: Mom, Dad, Grandma, God, etc. But our girl was different. She said she was thankful for her doctors. And yes, that is what I am thankful for too. Our doctors are amazingly smart men who are also very caring and empathetic and also have a love for kids....always joking around with the kids about this or that. I seriously feel like I owe my life to these men...how can you ever express your gratitude to someone like them?

Day 1 of Interim Maintenance.

Ally made her counts today. She had to hit ANC of 750 and she was 760....so just by a teensy tiny bit. So tomorrow is the official start of her "Interim Maintenance" phase and it begins with a dreaded spinal tap. I am so nervous about this after our bad experience last time. But there is nothing I can do to help matters other than be there at the bedside to support my daughter through it. Tomorrow is a bittersweet date for us in a way. If Ally would have been diagnosed with standard risk ALL, she would have been starting the once a month maintenance phase tomorrow. We would have been done with the extremely hard stuff. But our daughter was classified as high risk and also had that MRD number come back higher than they wanted. In turn, we are facing four more months of very intense chemotherapy and eight days in a row of radiation on her head. This is something I never wanted to do, but I am trying to come to terms with it. I am believing she has to do it to prevent the cancer from coming back.

We are also due a big snowstorm tomorrow. I love the snow, but get scared when it comes on days like tomorrow. Unfortunately, there are areas of the world that do not get "snow days" and the hospital is one of them. We are grateful to all the medical staff that brave the elements no matter what...sometimes they even sleep there and then start working again. The importance of the medical care comes first to them, and that is a good thing.

Tomorrow Ally gets a spinal tap. A push of vincristine. A new chemo push of methotrexate. An hour long infusion of her monthly antibiotic. And an hour long infusion of her IVIG immunity booster. It is going to be a very long day. I just hope she continues smiling as she has been doing lately. Smiling is good.

Thanks for praying for our girl.

Perfect Winter Day

Hello blogger friends and sorry for my lack of posting. I have no excuse except that I took a little break and all is going really well for us. I just tried to entrench myself back into normal life and, as I have mentioned on here countless times, it is so awesome to have normal times with Ally.

Ally is on a delay with her chemo. She was supposed to go in last week to start a new round, but her counts were only 390 and they have to hit 750 to start. I am almost certain she will go in Tuesday, so we have one day of our break left. She gets her counts done in the morning and we shall see. It starts with another spinal and I am soo soo nervous about that since the last one resulted in a week long headache and lots of pain.

Ally has been doing very well. A glimpse of our old girl was definitely back. She got to go to school Thursday and Friday. She got to play with her friends over the weekend and go out to a restaurant. Jerad took the day Saturday and spent it with his friends...they went to UD Xavier and then hopped in the car...drove a few hours to Indianapolis and watched WSU play Butler. This was Jerad's "ideal day" and it was so nice to not have to worry about an impending fever. I also have to give some special thanks to one of our faithful prayer warriors/blog readers who I have never even had the pleasure to meet: Tara Pakosta. Thank you for sending Ally the great card kit. That is right up her alley. Thanks for thinking of us.

But today...TODAY...was one of the nicest days that I have had in a long long long time. It is hard to explain why, and it will sound silly, but somedays are just perfect. I always say "I want this day to be in my heaven" and they are rare when they come about. It started with a lazy and normal morning around our house. We all went to church as a family today. This is really really rare for us. We don't let Ally go because her counts usually aren't high enough. The kids all went to "children's church" so Jerad and I got to have sort of a date at church. And the sermon was on loving God, and trusting God, and having hope which was all good. Pastor Gil is just so inspriring. He can just motivate me to keep on going all on his own.

We then went sledding and snowmobiling up at Fox Hill. We were blessed with about six inches of snow and it is all stuck to the trees in the most beautiful way. This is what I want in my heaven actually....the beauty of the snow. We really don't get too many big snows around here. So the chances were slim that it would hit when our daughter was on a delay and could actually enjoy it!! We are blessed. The hills at "Fox Hill" are extreme and fun and long. And the snowmobile is quite fun to ride around on to see the beauty. Ally even did it (very carefully). It actually felt warm today. We had no wind and the sun peeked out today during the time we were sledding and only that time. I always attribute weather and other things like that to my mom. She was up there today watching down on all her grandkids enjoying her land. And the sun was shining on their faces.

Jer and I then got to do our weekly bootcamp class. Which we love (to hate). And follow that up with a little Superbowl party (just us!) where we decided to be bad and eat our dinner on the floor in front of the TV and a nice warm fire in the fireplace. (Ally's idea). Jerad tried to make it extra fun for the kids by inventing some sort of Superbowl gambling that they could participate in with his poker chips. Leave it to Jerad to teach our kids about gambling...but they loved seeing who could guess the coin toss, first penalty, first run, first score, etc etc. It kept them interested and made it fun.

So again, I overflow with gratefulness. My family was apart all last weekend...and then all day Saturday too...so I was so happy just to have my little family together for the perfect winter day. We appreciate this so much especially knowing some of Ally's friends are having harder days, primarily Lincoln and her friend Amanda who spent over 10 days in the hospital in terrible pain. Our thoughts are always with them, even on the good days when we try to just forget this horrible disease called cancer and all that is has changed in our life.

Here are some pictures of our day. The snow is a natural light reflector and always allows for the truest and most wonderful pictures. I have to post them all to remember my lovely day.

Love this picture of Daddy and his kids....with beauty in the background

She hates sledding, but let me take her picture before she went in and drank hot chocolate with her Pa. (love her ski hat made by my Great Aunt June for Ally when she was little)

Love those snowy trees!

Don't worry, he went slow (when she was on)
Daddy also tried a little snowboarding

This is Jerad hauling me up the hill, after I had walked it about 7 times and was too tired.

Here are also a couple videos. Not riveting, but you can truly see the beauty and the length of the "medium" hill. We skipped the "big" hill today as we didn't want to press our luck!

Ally Snowmobiling




Daddy and Evan sledding.

Special Wish

When Ally was first diagnosed with ALL....well I honestly can hardly remember the first week and everything that occurred. From time to time I will ask my friend Nicki about it (like who had the kids again?!?....or how did I tell you, etc) or I will ask Jerad or my sister. This must be nature's way of blocking out the most awful memory of my life. Which is good. And upon diagnosis, the hemoc team sends people into your hospital room almost hourly to "teach" us everything we need to know about leukemia and support groups and organizations that will help us pay our hospital bills and etc etc. And yet for some reason, I distinctly remember the social worker pulling me across the hall into the lounge on the hemoc floor. She handed me a stack of forms and told me to fill them out so that Allison could get a special wish. I seriously almost started hyperventilating at that moment and I could barely sputter out words to her. " What...what do you mean special wish? She doesn't need a special wish. Isn't that for kids that are dying? My daughter is gonna be fine....no no no" I was seriously almost offended at the prospect. She proceeds to tell me that any child who is facing a "life-threatening" illness is entitled to a special wish. Again I think I uttered something like really, is she qualifying for this??? AHHHHHHHH. And for the 10th time that week I felt like I got punched in the stomach. Again.

I took the forms and filed them away. For months and months....I didn't even look at them. I am not sure why it upset me so....I had seen all those special wish commercials and human interest stories and I just didn't want that to be me and my family. After time, the reality set in and we heard stories about all her hospital friends and their "special wish" AND I started realizing that Ally did deserve a special wish. Someone told me that she deserved to have a wish to look forward to and to help her get through the treatment. A light at the end of the tunnel. And that is very true...but again, I was stubborn and I didn't want to take funds from a charitable organization when in reality I didn't need the funds. I didn't want to be a receiver of charity...when in reality we are givers. We would gladly pay to take her on a trip when this is all said and done.

Well, I have finally come to terms with the whole thing...a full eight months later I finally turned in the forms. I wrote them a long letter explaining all of this. They are an awesome organization, and I want them to be involved in facilitating and planning her trip. They can do so much more than I could ever do. Ally has chosen a very unique wish...most of the kids just want to go to Disney World. I don't have full details of what her wish entails, but I will share them when we do. Most of it revolves around going to Hollywood California and seeing a taping of her favorite show: The Wizards of Waverly Place. The people at the foundation called me yesterday and told me that her wish went in front of their Board and was approved!!! So now they just have to contact the correct people in Hollywood and try to create some magic for Ally. And this is something that I could never do for her. Again, I am so so so so grateful to all of these people who make it their job to make these wishes come true for so many kids.

So stay tuned....I am anxious to find out when and how this will all occur. But Ally is more than excited about the whole thing. She so deserves the full glory of all her wishes coming true. And this will be the light at the end of the tunnel for her. We will look forward to it on all those days that are not so fun....and I believe one is coming again next Tuesday. And Wednesday. Until then, we will continue to live in and cherish the moment we are in!

Please Pray

I landed back into the cold (but sunny!) Ohio about 3pm on Monday. It was good to be back AND I had a wonderful trip. It was nice spending time with my family...my original family of my Dad and my sister. Although the weather was not great (the sun did shine down for about 2 hours on Sunday and I pretty much froze while trying to sit out in it) we just had a really nice time. Shopping, organizing, planning, thinking...trying to make Dad's new place a home for us all to relax in. Oh how I wish I could take my family there, but not yet...we will have to proceed through the remainder of Ally's intense treatment before we can attempt to do that. If prayers are answered, we will all be down there in due time putting our little toes in the ocean. I pray for the day that my girl can wade out into that ocean and find a sand dollar on her own. The ocean is a wonderful place to sit and pray, by the way. Lots of prayers were spilled into the ocean water by me on behalf of our girl Ally and our friend's boy Cory. (who is doing remarkably better by the way).

I arrived home to quite a miracle I must say. There were several welcome home signs/card/ gifts...my husband was making dinner (the only thing he knows how to make: Chili, but still!), my house was totally picked up and they told me they had a surprise for me. Ally led me to the garage where they opened up the door to my car. It was CLEAN. (cue: angels signing) They spent three hours vacuuming, cleaning and scrubbing...my disaster of a car. It was truly a terrible mess and a definite sign that this Mom really does fly by the seat of her pants all the time. So that was just AWESOME. (I think I owe some thanks to Kopil too) Not only did my husband stay with the kids for me, but he did lots of little projects around the house for me and even laundry too! I know! I know! It doesn't get much better than that.

I also owe my sincerest thanks to three people who watched my kids while my husband went to work on Friday and Monday: Suzanne Duplain (thank you also for the dinner you left for Jerad/kids), Lisa Wygant, and Jackie Yount. I could never have gone to Florida without a little help from my friends and someday I hope to repay the favor!

I did come home to the reality that Ally's ANC number was not good enough for her to start the new phase of treatment this week. This is normal and expected, but I always hate delays. She was 390 and had to be 750. So she has the week off, and she is feeling really good. However, I did receive word (thank you Tracy) that the school is pretty darn sick this week...so I am holding Ally home a few days. She has enough to deal with and I know she will catch anything that flys by. We still do tutoring and then she pretty much job shadows me all day, which can get really tiring for me, but what can I do. I do think the girl could pretty much raise a family at age 8...she can cook, clean, do laundry, follow recipes, put away groceries, lay her sister down for a nap, you name it and I have taught her. I guess this is the school of life and I am her teacher.

I have mentioned on here several times my hospital family. And my hospital family is very dear to my heart. Another of our family, Hollie, was mentioning that we are kind of like a military family...we all have to stick together and rely on each other and fight the battles together...whether they are good or bad, we are just together. We have similar heavy hearts and tired faces and prayerful hands. We follow each other's stories every single day, thru the blogs, even if we don't see each other...we are there in spirit. So today my heart is very heavy...as the youngest member of our family, Lincoln, is possibly facing the last moments of his short life. He has seen more trials in his one year of life than most will ever see. He is a sweet baby boy...who we first heard about when the St Luke's moms held a lemonade stand last summer for Ally and Lincoln. We have spent many a day in the hospital right by him with Ally trying to make him giggle from his hospital crib. Today I am praying for a miracle for our baby Lincoln. He deserves a miracle and then some. Please pray.

What Time is It?

Not sure where the day went, but I did want to post some pictures from the WSU game on Saturday. Ally was quite the rockstar thanks to the presence of orange on the floor. Everyone was wondering what "Ally's Army" was, who was Ally, why were the players wearing it? Too bad the local media didn't pick up on it because I have to say it was a pretty amazing thing that the team did for Ally. I was expecting to see them run out onto the floor in their Ally's Army shirts and then that would be it, but they wore them the entire game. And most of you know how bright orange the shirts are, so YOU COULDN'T MISS THEM! They even somehow got long sleeve shirts because that's what their typical warm-up shirt is.

Coming out of the locker room.

As they run out onto the floor for warmupsLayup line is a sea of orangeWSU player introductionsOn the bench still showing their support for Ally's Army
Our gang with "the Wolf" in our impromptu Ally's Army section (thanks BG!). Note that Carly is nowhere to be found as she is DEATHLY afraid of the Wolf. He was nice enough to come up for a picture moments after I had assured Carly that there was no way possible the Wolf could get to our section. I'm not sure she has forgiven me yet.
Ally had the entire team sign her shirt after the game. Here she is with one of her (or is it her Mom's?) favorite players, Vaughn Duggins.
Couldn't quite get the color right on this one, but here's our rockstar with her boys
Our good friend Brad who we can't thank enough for a great day for Ally. For every missed Christmas or party or other everyday event that the poor girl seems to miss out on, there are days like Saturday where people go out of their way to make her feel more than special. I'm so thankful she felt good enough to experience and enjoy the day.
Three of my favorite members of the Army. I have to give Evan and Carly both credit that they never seem jealous of all of the attention their sister gets.
There is also another picture I'll have to have Janel add at another date of Ally out on the floor with a lady who does various basketball tricks including spinning multiple basketballs. She had Ally hold a pen in each hand and spun a ball on each pen while Ally held them up. Very cool and very heavy according to Ally!

Our day actually started with an earlier game, Evan's first official basketball game this season. He played hounding defense but alas neither scored nor got a rebound. Don't worry, we came home and practiced outside in the 20 degree weather so I'm sure he'll get a double double next game. Ally was extremely excited to run the scoreboard and, as you can see in the picture below, always has Tim Horton's on hand just like her mother.

Evan's in the foreground in blue clearly doing all he can for the rebound.
Ally (with a little help from Joshua) running the scoreboard
We had a great weekend even without Mom but we are definitely ready to have her back!