Monday, May 31, 2010

Memorial Day

Happy Memorial Day 2010! We enjoyed some beautiful weather and spent time with good friends up at our lakehouse for the weekend. Last year, Ally was diagnosed just a few days after Memorial Day...we opened up our lakehouse and made it back up in time to close it down. This summer we have much higher hopes that we can spend a little more time up there.

It was quite surreal to be leaving Dayton as a family on Friday night and also getting to do something fun. We figured that Ally had not spent the night outside her own bed (or the hospital bed) since September. We weren't sure how long it would all last. She ended up coming down with a pretty nasty cough...and most of Friday night was spent awake (for all of us!). She started getting a fever and at 4:30am it actually reached 100.5. At 101 we have to take her to the ER. We were seriously getting ready to pack up and head home in the middle of the night, but then it started going back down. Needless to say, we ended up staying at the lake. She felt a little yucky on Saturday, but then Sunday and Monday did great. We are thankful that she fought this fever off on her own. She is not allowed to immerse her head in lake water, per instructions from our nurse, so that is a little bit of a bummer. She waded a bit and also went for several jet ski rides/boat rides/paddle boat rides. The weather was about the nicest it has ever been and some of her friends came up on Saturday and made it even more fun.






Oh yea, she finally lost all her hair again too. RATS. I thought she was actually going to sneak by without losing it the last time, even though her doctor kept telling me it would come out. He was right (as always). It started coming out in huge clumps and we had to take the razor to it again. Hopefully this is the last time EVER that anyone in this family has to do it.

On Sunday, we were very touched when we read the article in the paper by Tom Archdeacon. He just did a fabulous job capturing our family. My Dad and I talked to him on Wednesday for about an hour and a half. He came down to Children's on Thursday and spoke to us again and also interviewed Ally (a tough task). I overheard her talking to him about fishing with her Pa. And then came to read that she said she could fish better than him. Here is the link to the article:


I also wanted to include a video of my Dad's remarks to the crowd of 600 at the party last Saturday night. Tom talks about the emotion of it all in his article too, but this way those out of towners or those who missed the party can see it for themselves:

video
And finally, we just spent the last couple hours of our Memorial Day doing what Ally likes: fishing up at Fox Hill. I was laughing as Dad was baiting her hook and remembering her saying to Tom that she can fish better than him. I told her she got a little bit of her Pa's "bombast"...she says what is that??? Jerad says "that means you're confident". And I said "that means when you do things, you do them well, or at least you act like you do" And about an hour later she had caught four big BASS fish. That's my girl.

Tomorrow is chemo day. The last chemo infusion of this "intense" phase. Next week, count dependent, she should enter into the phase I have been waiting for "long term maintenance." Thanks for following our story and for all the nice emails/calls/etc about the newspaper article!

Sunday, May 30, 2010

Check the Dayton Daily News!

We are at our lakehouse for the weekend and the computer is down!! A quick post from my phone...there is a wonderful article in the Sunday paper (front page of sports and also inside) about Dad, Ally, and our event we held last weekend. Tom Archdeacon wrote the article and I have always admired his work. Thank you Tom for spending time with us last week and capturing our story.

Thursday, May 27, 2010

The year in numbers

One year ago. May 27, 2009. Ally was diagnosed with ALL leukemia.
One year later. May 27, 2010. I will try to reflect on a bit of our year.
I am an accountant, so some of the numbers stick in my head. So this post will be about the numbers and dates I remember.

White Blood Cells at diagnosis 92,000
White Blood Cells after chemotherapy 0-3000
1 surgery
52 weeks of chemotherapy treatments...sometimes getting chemo 4 times a week.
4 inpatient methotrexate weekends
8 radiation treatments
About 20 spinal taps
4 Bone Marrow Aspirations
MRD at .45% 6 months of intense treatment goes to 12 months.
20 blood transfusions
6 platelet transfusions
40-50 nights slept in the hospital
335 days without hair
$147,000 of medical bills in 2009, probably the same in 2010
7 days without speaking to us because of mouth sores (twice)
5 days with no food at all due to pancreatitis
20 days of being fed through her IV.
20 pounds lost. 20 pounds gained. 20 pounds lost again. 20 gained.
100 hats, 3 different sizes of clothes in one year (see above)
One wig. Never worn.
Countless days absent from school.

In the hospital on her brothers birthday, my birthday, and our wedding anniversary.
In the hospital for her Pa's fall party, released one day prior to Halloween.
In the hospital for the fall gala in honor of my Mom.
In the hospital on Christmas Eve, Christmas Day, and St Patricks Day.
In hospital for Butler WSU game (a holiday for some of us)
In a wheelchair at her Valentine Party.
In the hospital on the anniversary of her Grandmother's death...the day we were to spread the ashes.

1000 Ally's Army Orange Bracelets
400 Ally's Army T-Shirts
1200 people reading Ally's blog
3 Awesome Hematology/Oncology Doctors saving her life
Countless nurses doing the same: We love you all.
400 people walking behind Ally for Light the Night Walk
$40,000 raised for LLS for the walk
600 kids chanting Ally's Army at a school pep rally
12 WSU players wearing Ally's Army orange to their game
12 WSU women players signing a basketball and presenting to Ally
2 Poker Tournaments in Ally's name
1 Junction City Dance in Ally's name
50 dinners delivered to our door by true friends
15 days taken off work by Grandma and Grandpa to watch Evan and Carly
7 days taken off work by Aunt Jess to do the same
3 surrogate mothers for Evan and Carly (Melissa, Nicki, and Suzanne)
6 visits to the hospital by Pastor Gil
1 generous and loving Pa who opened up his home to 600 people for her fundraiser party
600! people attending Ally's Army Battles Cancer event
$150,000 raised for the Leukemia and Lymphoma Society in one night.

3 grandparents with broken hearts
2 siblings who were shuffled around all year long.
2 tired parents.
2 proud parents.
2 grateful parents.
1 horrific year.
1 amazing year.

1 STRONG HEROIC INSPIRING 8 YEAR OLD GIRL

We love our Ally more than any words can ever say. More than I can ever write about, speak about, probably even think about.

Today, we marked the day with an event at the hospital. The Mills Family foundation (my Dad) gave the funds to completely renovate the Hemoc Lounge/Kitchen on the fourth floor. Today, Ally and our family cut the ribbon and walked into the room for the first time. It is beautiful and kid friendly and parent friendly. People will actually be able to cook meals for the their kids and make a cup of coffee for themselves. And sit in a comfortable chair and play a game or watch TV or just have a moment of peace. We wanted to do this for the kids who spent weeks, months at a time in the hospital. When we decided to do this (early December) we were doing it for Ashley and Davey...and a few others. Ashley and Davey are no longer with us, but the room will live on to help those that come down the cancer road.

I have so many pictures and videos of our event today too. I will save it for another day, because my post is too too long already. Again, I am promising to get them out here. Today, I felt it best to focus on what Ally has been through and honor her for her strength. It is quite ironic that last year, I was throwing up into a trash can in that very same room upon hearing the leukemia diagnosis. This year I was enjoying the room with my kids, my husband, my Dad, my sister, my nephew...and quite a few of our hospital family who I have grown to love so much.

I am praying for a much better year to come.

Wednesday, May 26, 2010

So, I am going to try to post something without getting too upset. This day is a bit hard for Jerad and I. One year ago, on a Wednesday, just like today, I walked down to the busstop to meet Ally. She dropped her backpack at the corner, and took all the strength she could muster just to walk the four houses home. She went straight to the couch and laid down. I opened her backpack and found her lunchbox. Her lunch was still inside it, never touched. I got a pit in my stomach and called the doctor, but never ever thinking it would be leukemia. The day was exactly like today....it was sunny and hot and just like summer. Last year, some of the neighbor kids had gone to our community pool to try to cool off. I called my friend Nicki, who was at the pool, and asked her to come help me out and stay with the kids while I took Ally to the doctor...who sent us to the hospital. After the blood test, and me running down the hall to get Jerad, we heard from our family doctor the news. We both felt kicked in the stomach, confused, and frantic. Well, you can read the whole story here. http://all4ally.blogspot.com/2009/06/diagnosis.html I really don't need to relive it again.

But again, today was somewhat eerie for me. Because the weather and the day seemed so alike. But today is different. Today, Ally came home from school. She walked home all on her own and I was upstairs putting her sister down for a nap. When I walked back down the stairs, she was standing in the kitchen with her bathing suit on with a big grin on her face. She really didn't even say hi to me but instead told me she was going to the pool with Madison. And she did! Although Ally sat on the side of the pool for a lot of last summer, today she was right in the middle of the pool playing with all the kids!! And when her Dad came home from work, she asked him if he would take her back to the pool. So what a difference a year can make.

Tomorrow actually marks the one year anniversary of Ally's diagnosis. May 27 will forever be a horrible day for me. (Sorry to my friend Shelley whose baby boy was born on this exact day last year...Happy Birthday Joshua) But on this May 27th, we are marking the anniversary in a good way. I will post tomorrow about that.

For now, I am going to continue with little bits of information from the fundraiser Saturday night. While I wait for some photos of the event to come in, I will post a video instead. This is for the out-of-towners and/or people not there that night...but these are my remarks that I spoke to the crowd. Thanking the army, talking a little about my hero Ally, and describing my Dad's giant heart to the crowd. On another blog day, I will post my Dad's remarks too...I can't overtax the system here with too much.

video

Monday, May 24, 2010

Erin Cobb

Still playing catch up with a bunch of stuff. Thanks to all who have sent me pictures of the big party. I will try to compile something soon. Thanks for all the lovely comments, facebook posts, emails, etc, that I received today. You guys are awesome.

Tomorrow we are headed back to the hospital for chemo. I am guessing she may need blood and/or platelets too. She has chemo on this Tuesday and then next Tuesday. Then on the third following Tuesday she would start her "maintenance phase" with a spinal tap. It is unbelievable to me. A long time coming, don't get me wrong, but somedays I just never thought we would get there. We are also going to an event for the Hemoc kids tomorrow night. They are setting up Build a Bear in the basement of the hospital for them. All three of our kids get to do it. She had to miss it in the fall because she was too sick.

I want to close tonight with a link to my friend Erin Cobb's blog. She is the one that took all the pictures the other night (and raised $2000 for LLS). She took some pictures of us last year, just a week before Ally was diagnosed. You can even see how sick Ally looked in the pictures. And now this year. A full year later. She looks better. It is interesting to read what she has to say about Ally...and my Dad...She (and her followers) has provided me with much moral support over the past year. I am grateful for her. And check out the awesome pictures that she took....

Click the link:
http://erincobb.com/Blog/?p=2020

Sunday, May 23, 2010

Amazing Success

Ally's Army Battles Cancer.
Yes we did.
Just short of 600 people, under the tent, on a beautiful and sunny May evening.
People were kind. People were generous.
People were crying. People were laughing.
People were hugging, talking, dancing, eating, drinking, and having fun.
It was an amazing show of support for my Dad's Man of the Year campaign.
It was an amazing show of support for my daughter Ally and our family.
Ally was strong and healthy and serving lemonade to the guests.
I spoke. My Dad spoke. We shared our stories, although shaky.
We played a video of a Day in the Life of Ally.
We had a live auction. It started with a pottery bowl handmade by Ally.
It sold for $14,000. $14,000! And I wept.
The kind woman who bought it, Ms Terry Huber, donated it back to our cause.
And the bowl was sold again for $10,000.
I tried to explain to Ally that you could buy a brand new car for $24,000.
She didn't really get it. But someday she will.
We continued on with about 15 more live auction items.
And capped it off with about 70 silent auction items.
We sold raffle tickets to win a car or $25,000 cash.
We sold t-shirts and pins and bracelets with Ally's name.
People were generous beyond belief.

We raised $150,000 for the Leukemia/Lymphoma Society.
We raised $150,000 for the Leukemia/Lymphoma Society.
We raised $150,000 for the Leukemia/Lymphoma Society!!!!!

Two amazing bands played music the rest of the night.
The Rebel Set (my brother in law) and Mavis Pearly.
They really rocked the crowd and everyone there was dancing.
We danced and celebrated and forgot about all the trials of the past year.
At least for one amazing night.

Most importantly, we made a difference!
Ally's Army is battling cancer.
And winning.

Thanks to all of you who attended our fundraiser party last night. It was a night that I will never forget. Thanks to all of you who have helped to plan and made donations and allowed this money to be raised. Thanks to my generous father who opened his home and made the magic happen again.

I wasn't able to take pictures. Too busy. I am hoping some of the Army will send them to me, so that I can share this awesome event with all the out-of-towners. I do have some video to share too. I will try to get something out here soon. For now, I am basically exhausted. Gonna give myself a break tonight. But you will see something soon. I promise.

I love you all for everything you have done for my daughter and my family.

Friday, May 21, 2010

Ally's fundraiser Eve

I am running on pure adrenaline now. I woke up this morning feeling like I hadn't slept at all. I was crabby and every little thing kept going wrong. I am past exhaustion from the past two weeks of daily radiation, daily chemo, and party planning. Whew. It is amazing how much of a mess can build up in my house!

However, I am feeling much better as Ally finished her last radiation ever today!! Hooray. She chose to go to IHOP for a celebration. We had never been there. She ordered the happy face pancake, which was quite appropriate for the day. Oh by the way, Ally says she wants to work there when she grows up. hee hee She also got to bring her butterfly mask home with her and has already shown it to a few of her friends.

She also got her last, I believe, dose of ARA-C. Chemo didn't go so well today...our nice home nurse Pam couldn't get a blood return from the port...which means you can't get chemo...she went out to the car in order to get a new and bigger needle to insert in Ally's port. Ally started crying and sobbing (very sad to witness for poor Aunt Jess who is pregnant and emotional). Well the crying must have gotten the blood moving enough that all the sudden her port worked. Thank the Lord. That would have been a bad day if we would have had to repoke her without EMLA creme on. We dodged a bullet.

Maybe I should mention we had one more big event this week. We got our family pictures taken last night! The one and only Erin Cobb was in town from Alabama. She had taken our pictures last May...just a few days before Ally was diagnosed. She has been a loyal blog follower and friend and raised a lot of money for LLS in the fall. She generously decided to hold eight mini-sessions and donate the entire payment to my Dad's Man of the Year campaign. That amounted to $2000 she posted today for our cause. Thank you so much Erin. Not too many people would be willing to donate their time and talent to that degree. You are one of a kind and we are so grateful. I will share some pictures soon.

So the party is coming. Rain or shine. I don't think the rain should make a difference as most everything is inside a tent. Everyone keeps asking me about the definition of casual. It does mean jeans, nice shorts, etc. Pretty much anything except maybe tube tops or bare midriffs...isn't that what they always used to say in school? Use your own judgement.

I am most grateful to my father who has opened up his home and spent countless stressful hours being "in charge" of this party...while I was taking care of Ally and mostly in the background. Having almost 600 people over to your house is no small task. It is huge. And stressful. And today when I saw all the things people had donated for our cause I could do nothing else except cry. Thanks to everyone who helped us get ready. And to my sister in law Jess for cleaning my house today. And especially to my sister and Gavin, Jessica, Larry and Suzanne, and Nicki who sat in my kitchen for about 3 hours tonight assembling all the programs, bid tickets, and seat assignments. Not a fun Friday night, but all for a good cause. Our girl....ALLY.

Wednesday, May 19, 2010

Thanks for prayers

Ally has two more treatments down for this week. She had two more radiation treatments as well as two more ARA-C chemo infusions. She got to see Dr B on Tuesday when we were in clinic. She has been having a lot of pain and trouble with her right foot. She limps all the time and says it aches and hurts even when she is sitting still. He decided to do an x-ray and I guess it showed that some of her bone is deteriorating. They had a fancy word for it, but I was rushing into radiation when I got the call about this and didn't write it down. The culprit for this problem is her steriods. I guess they can cause bone loss. So if it is not better by next Tuesday (which I really doubt it will be) then they are going to do a bone scan on her. For now, she has us wrap it up and I try to limit her walking.

We found out her ANC is 700, not too bad, but definitely on its way downward. After the four doses of chemo this week it should drop very low. In fact, I told him my worries about the weekend...like what if she would get a fever?!? And he told me that she would probably end up having to be inpatient. So we just have to all pray really hard that doesn't happen. Because we have so many people coming to the event. I seriously think we could go up towards 600 people.

Every night before she gives her Mommy her kiss goodnight I make her recite three times: "I will not get a fever. I will not get a fever. I will not get a fever." She thinks I am crazy. Well she knows I am crazy anyway. I am calling it the power of positive thinking.

So so so many people are supporting us by coming on Saturday night. I get all choked up just thinking about it. Wait until you see how many fine people have contributed things for us to auction off and raise money for our cause. We have all kinds of services that people are donating (an orthodontic package!)...tickets to huge sporting events...dinners/food...vacation homes...sports stuff...jewelry...purses...Ally even handmade a huge pottery bowl over the weekend that we will be auctioning off. It is really cool too.

I get extremely emotional even thinking about how I can thank all of these people. I am not sure I can even do it. When something so bad can happen to us, but then we can take it and turn it around and do something so good. That's what life is all about. Jerad's dad has this poster about priorities hanging in his kitchen. I always remember it. It says something about how at the end it doesn't matter how big the bank account is, or how many hours you worked, or how many clients you had, but rather how you made a difference in the life of a child. He is right. And in fact that is his priority. (and by the way, Happy Birthday John/Dad/Grandpa)

My heart is especially heavy tonight as we learned one of the "hospital family" has had her cancer return. For the fifth time. You read that right...FIVE. She has Wilms Tumor (a fancy word for kidney cancer) and it is devastating news. She is just about Ally's age. Likewise, I mourn for those suffering and those we have lost. Our friends who lost their daughter to leukemia in the fall (Ashley) are coming to our event. How brave of them and how grateful I will be to have them there. We will remember all the children (and adults) suffering as Ally's Army Battles Cancer.

Monday, May 17, 2010

Butterfly Mask

Well, I just yelled out to Jerad to give me the number. At 11:13pm on Monday night, we currently have 502 guests signed up for the Ally's Army Battles Cancer fundraiser. It is amazing. This whole journey has been quite amazing, but some parts are just unbelievable. I will never ever never ever forget the Light the Night Walk. I am sure I can also add this party to our unforgettable list. It is going to be fun...hey this is 2.5 times the number of people that we had at our wedding. We are lucky and blessed to have so many people that are willing to make a difference in this battle. Baby steps all add up to big huge steps. Hopefully for a cure so that no one else has to deal with this dreaded disease called cancer. 502, 502, 502, 502...I hope I can hug them all.

I do finally have a picture of Ally with her radiation mask all decorated. I have had several requests to see it, so here you go:
Is she seriously smiling in this thing? Wow she is. I guess that I have trained her well on posing for pictures. Only about nine years of her Mom constantly flashing a camera in her face.
This is Ally's actual radiation machine. That top circular thing actually comes down to the side of her head to radiate out the beams. And that is her sweet technician Crystal who actually painted the mask for Ally. NOTE: Bobo has now been exposed to radiation. (see him at her side?) We have to leave the room, but Bobo gets to stay!
Four Days down and four to go. Also going to Dayton Children's in the morning to start another four day round of chemo. Pray that she stays well for our event!

Sunday, May 16, 2010

Good Weekend

Ally has done amazingly well all weekend. We are very grateful. She finished her last round of antibiotics (because of fever) on Saturday night. She got de-accessed and was finally able to take a shower. She had her needle in for five days.

She was able to do lots of regular things this weekend. She loved our neighborhood garage sale...of course she set up a stand selling her crafts and punch and popcorn. Some of her friends set up a root beer stand in their driveway and wore their Ally's Army t-shirts. They raised about $40 for the leukemia society just doing that. I always love when kids recognize and work towards something charitable.

Ally also did a little fishing, played outside, and got to have a sleepover with a friend. Again, very normal things, but to us those moments are cherished. They really are and I can't even begin to try to explain it.

Today we did a walk, similar to the Light the Night Walk, but for a high school friend of mine whose son has Cystic Fibrosis. I really wanted to go because I know how important it is to show support, plus I got to see some of my old friends. Ally also really wanted to go and had lots of questions about the boy, the disease, etc. She has great empathy and knows what it is like to some degree. We were going to push her in our bike trailer, because she is not a strong walker right now, but promptly got a flat tire. Yikes. Luckily our friend Craig loaned a wagon and also pulled her along. Thanks Craig.

Tomorrow is radiation again. Then Tuesday thru Friday we have radiation and chemo every day. And then.....drumroll please.....the party. I keep telling my family, after this week I will be found on the couch every day, all day, recovering. Having a huge party the same week as all of this is just crazy stuff. Thankfully there are lots of people helping out.

Speaking of the party...I am off to try to do a seating arrangement for the tables. We just have too many people coming to try to wing it, so we are assigning a table for at least the auction/dinner part of the night. So. I think I have a master list of everybody coming. BUT..if you have not signed up...and I know there are quite a few people who told me they are coming, but are not on the list yet....please sign up! There are also still seats on the bus coming from Junction City and Columbus, and you can email Jess if you want a spot. (jessneal@att.net) I am going to make one more last ditch effort to get the final list.

Here is the link to sign up!
http://soh.dayton.llsevent.org/allysarmybattlescancer

Friday, May 14, 2010

Day 2 and 3

Ally has made it through doses two and three of her radiation. Both times we were in an out of the facility in about 20 minutes, so that is much better than the first day (it is still about a 2.5 hr drive roundtrip). She decided to make things interesting yesterday by (ALREADY) coming down with a fever. I had no idea she even had one. The home health nurse arrived about 4pm to give her the ARA-C chemo, took her temp, and it was right on the fringe of 101. Within 10 minutes we were in the car and on the way to the hospital. I was directed to go to the ER, but since I knew the clinic was still open I called and begged and they took me there. Thank you to sweet Heather our clinic nurse. I was just very uncomfortable with going to the ER since they are not familiar with radiation/chemo drugs, etc. I was really scared that the radiation was causing the fever, because she only had two days worth of chemo in her body. But I think Dr B was convinced it was the ARA-C drug, which has a listed and common side effect of a fever. They drew blood cultures on her, gave her some IV antibiotics, and made sure her ANC was high enough to be released. It was at 2300, so plenty high. So now, in addition to radiation and chemo she is also getting the IV antibiotics for three days. I am happy to do it to protect her and just keep the show on the road. I was quite scared they would delay the radiation, but they didn't! Ally is still experiencing headaches. We think it is from the radiation.

We had planned to go to the District Art Show before we knew Ally had the fever. Ally had a piece of art that was selected for the show. We were thinking we wouldn't make it there, but then nurse Heather was so fast that we ended up having time overall. Here is a picture of Ally with her piece of art that was selected: A character bear.
And yes, it broke my heart when I saw that her bear was getting its temp taken and also getting shots in the leg. This is what she knows, and it is apparent through her artwork.

Thanks to all who have signed up for the fundraiser party for Ally next Saturday. We are now at about 300 people, but I know there will be more. The event is almost here! I am praying praying praying that Ally does okay this week and has no more fevers! I would love for her to see everybody and she has a few special things she is doing.

Here is the link to sign up!
http://soh.dayton.llsevent.org/allysarmybattlescancer

Wednesday, May 12, 2010

One Down

Chemo was infused at about 930 am. Then we got ready to go to UC for the first radiation treatment. After checking in and seeing the doctors (briefly) we had to wait two hours to go back to the radiation machine. UGH. They said every other day it might be 10 or 15 minutes but a machine was down today and they had to cram everyone on one. UGH. So that wasn't the greatest start. It is very sad to sit in the waiting room at one of these things. You see all kinds of people...all afflicted with cancer. Some getting their necks, their breasts, head, uh...it just makes me sick. Ally was the only child in the room. I also believe she was the only one without hair.

When she went back, they showed us her mask. They had painted it all up to look like a butterfly with the eye holes popped out for her. I need to take a picture. They said she gets to keep it at the end. They bolted her down right away and it was tight! I mean really tight like she can't even move her head 1 millimeter. Not a centimeter...they were raising her up and down and getting her lined up to the MILLIMETER. All three doctors were studying her positioning and getting it just right..up a millimeter, down a millimeter. As soon as she was bolted down...it hit me really hard. I couldn't help but start crying, but she didn't see me. It was just the most awful feeling to see my baby girl up on that big table with the mask on. Knowing those rays were going right to her little and still developing brain. It was like a nightmare but it was real. We had to leave the room for about twenty minutes while they did all the first day positioning, etc...which was good because I didn't want her to see me anyway. We watched her on some big TV/Computer monitors. We got to go back one time during the positioning to check on her. She requested that the radio be on. As soon as we walked in to check on her, the song "How to save a life" by the Fray was playing on the radio. And then it all hit me again....yea, we are saving her life. More tears and I quickly exited the cement room with some technicians bringing me kleenex. It is just so hard to see. I really tried to stay strong, but I can only take so much. At least she didn't see me.

Ally though...she did great. Awesome. Way better than I would ever do. She kept giving the thumbs up signs. Finally they started the actual radiation. I think it took about 2 minutes. The machine was spinning high above her, then over to the side of her face...back up, back down. It looked like a Kings Island Ride the way it was whipping around. Lights were shining and she told me later it looked like fireworks. When it was done we moved back to the room and they unbolted her. She had waffle print all over her face and nose because the mask was so tight.

Seriously. Give her the bravery award. She is my hero. She is other people's hero. She is so laid back and good. Tonight she was complaining of a headache. And it hurt right under her ear lobes. And her cheek, back by her ears, was really hot. She said it felt like she got sunburned. This is only day one, and I wasn't thinking we would see this, so I feel a little sick and worried right now. We go back down tomorrow at lunchtime. Then chemo at 3pm. Please keep our girl in your prayers right now.

Tuesday, May 11, 2010

Radiation Eve

We made it through another spinal tap. I think I should make a countdown because I think she has maybe six or seven more left over the course of the next 17 months. We had a very very long day. Left for hospital at 8am, home at 7pm. Luckily, Grandma came down and stayed with my other babies. The crazy thing is that we are back at it tomorrow morning. She has chemo at 9am and then we hop in the car and head to Cincy for her radiation at 1:30. Right now it is all feeling very overwhelming. I am sure it will feel better when we have a few of them under our belt. I don't know how we handle this stuff sometimes, but really we are given no choice. We are just trying to focus on Ally right now and regular life is just going to have to wait. We are grateful for those who have stepped up to help us during this difficult time.

Ally managed the spinal pretty well today. No tears! But then she did end up gagging/throwing up some right after. She is already complaining of belly pain tonight. It comes on so quick. Believe it or not she has gained 20 pounds in the last six weeks. She fluctuates so much! I really need to go get her some pants that actually fit her, but no time now!

Please send some prayers that the radiation does exactly as it is supposed to do...that the target is hit very clearly and that any stray cancer cells are destroyed immediately. Please pray for no long term damage and that we never have to face anything like this again...EVER.

Monday, May 10, 2010

She made it!

Ally made her counts!!!! She had to be 750 and she was 1350. Her hemoglobin was also very strong at 12.7. I know this may sound very strange but I was holding back tears of joy when I found out that she could start this cycle. Who is happy that her daughter can start a very intense chemotherapy AND radiation regimen?? I know it sounds crazy. I have just felt it hanging over our heads for a while now and want to get the show on the road! This also means that her last radiation day is May 21st...the day before the party.

Tomorrow morning she enters the Almost Home Unit at 8:30am. She will get a spinal tap with intrethecal (in her spine) chemotherapy. She will get Cytoxan chemo...this can be very damaging on her kidneys so they must follow it with four straight hours of fluids. She is due her monthly IV antiobiotic (one hour) and her monthly IVIG for immunity (two hours) We will probably be there until the sun goes down. She also starts four straight days of ARA-C chemo.

I wanted to post a little more information about the bus coming to Dayton for the May 22nd fundraiser party.
1. Please let Jessica Barnett Neal know if you are planning to ride the bus by sending her an email at jessneal@att.net
2. General pickup time will be 3:00 in Junction and 4:30 ish in Columbus.
3. Considering having an east Columbus / Canal pickup for the Lancaster/Canal/Pickerington folks and west Columbus pickup for the rest – we’ll see depending on the responses
4. Cost is $15 per person.
5. We have room for 56 people. Although I think about half is already reserved.

And also, don't forget to sign up for the actual party at:

http://soh.dayton.llsevent.org/pledge/index.cfm?mid=ALLYSARMYBATTLESCANCER

Thanks to all who have already signed up. We have a great response!

Sunday, May 9, 2010

Mother's Day

Mother's Day is here and gone. I did enjoy the day as best as I knew how to do, being that I didn't really have a Mom to dedicate some time to. Instead, I did a few things that I knew my mother would want me to do. I planted some flowers. I refilled the bird feeder. I went to lunch with my Dad and my Gramma. I got ice cream with my kids.

I also was very lucky to receive breakfast in bed by three lovely children. I got exactly what I ordered from Jerad at midnight last night: Multigrain cheerios, a half a grapefruit, and my coffee with peppermint mocha creamer. Perfect.
I must have earned some extra Mommy points this year. Either that or my husband feels really sorry for me. I usually get flowers for Mother's Day. This year....I got an ipad. Seriously?! Seriously. And so now when I spend all this time in waiting rooms, exam rooms, radiation drives, etc...I will have a little toy to keep me (and Ally) busy. He told Ally the gift was for her too because she is such a Mother Hen. She is constantly helping out around here. And God knows she deserves it for all she has been through. Wow, Jerad, I take back anything I may have muttered under my breath about you not being the best gift buyer when I got the "rocking planting chair" yesterday. Hee hee.


Although my mother is gone, I have two wonderful grandmothers. I am so fortunate for this. I got the rare opportunity to have them both with me at the same time earlier this week. (and my sister too). I also have a wonderful mother-in-law who takes extra good care of me ...and a few other "surrogate" moms who are always here for me too.

I have a few friends who are in this boat with me and have lost their Mom too early. Lisa, Lara, Becky, Sheri, Corrina, Kimmie....and probably others that I am forgetting....but I thought about them all day too.

The other day, when I was flying above the clouds, I kept looking out and wondering what she is doing in heaven. I have many ideas. The clouds are so beautiful on so many days. I never used to notice that, but now I do. All these things that have happened to me in the last couple of years make me so much more reflective. Sometimes little things are really really huge to me. And sometimes huge things are not. I am no longer complacent. I (hope) I don't worry about little things. I hope I see the big picture. And somedays I think...it's all good, because someday I will be in heaven and all my questions will be answered. And I will see my Mom again. So I gots to go........I have an ipad to set up!! Tomorrow morning is blood counts. I desperately want her to make it so we can get this show on the road.....get going and get it done. Please send a little prayer up for THAT.

PS...if you are a Monday reader, I also posted on Saturday with all the details and pictures of her radiation mask! (Sunday is a slow day in bloggerville.)

Saturday, May 8, 2010

The mask is made...pictures to follow

We made it down to Cincinnati. It was quite a haul all the way down there. I had never been on the campus of UC before. Ever. We are not going to the Children's Hospital. We are going to University hospital...they treat both the Dayton and Cinci Children's patients at this facility. With a ginormous super expensive radiation machine that is surrounded by 8 feet of concrete on all sides or something like that. There are just a few of these machines, so everybody shares them...adults and kids.
We ended up taking Carly with us and we also ended up being late by the time we found the place, parking garage, registration, etc...I was feeling really bad about it. I despise lateness. But the person who greeted us couldn't have been any nicer. She was waiting for us. And now we have our own parking pass to an outdoor lot and a bar code to scan to get us in and everything should work very smoothly from here on out. (I love little details like that)
Ally met another doctor: Dr Ruth Lavigne. This woman was very kind and very enduring. She hopped right up onto the CT scanner table with Ally and put her right at ease. She was talking to her (not just us) and getting quite a few smiles out of Ally. Thank god when we are very nervous that God chooses to put people like these into our lives. It makes a difference.

The technician and the doctor proceeded to make Ally's mask that will be used for her radiation treatments. They basically started with a warm and wet piece of thick mesh. Ally laid down and they laid it over her face and bolted it right down to the table immediately. It seemed very suffocating to me. I know I would have been uncomfortable with it. But Ally did great. She had to lay perfectly still...not even allowed to talk, and she did! They kept asking her if she was ok to give them a thumbs up. And she kept doing it. Once they got it on her, they fussed around pulling the nose out and the eyes out a little. They put some sensors in different places. They try to avoid letting any radiation hit her eyes. Then we all had to leave the room and they put her back into the tunnel and did a CT scan. This was after about 10 minutes into her having that mask on. After that was done, we were allowed back by her and we just had to talk to her for another five minutes or so while the mask was setting up/drying. God gave her this laid back personality for a reason, because she did great. They finally let her out of the mask and took us on a tour of the facility and her actual radiation room.
Of course, while all this was going on, I said "would you mind if I took a picture? I have a few people who would like to see what this mask looks like?" I really meant a few hundred people! They told me everyone takes pictures, so that made me feel better.

The mask is hard plastic and looks like this:

Here she is when she was bolted down. The lasers are the green lines and help them to line her up perfectly.
When she got done, she had a waffle imprint on her forehead. Not sure if you can see it here. She thought it was funny.
Little sister watched from the sidelines. That is the CT machine in the background, but this is not her radiation machine.
I honestly don't think I would have handled it nearly as well as she did. It all seemed very suffocating to me...like someone put a warm wet hand towel over your face but you still had to breathe. Yuck. Somehow, through this whole process, Ally just knows that she has to do it. She does not ever say no to a health care worker (but sometimes to her Mom and Dad). Once again, and I know I say it all the time, I am proud of her.
We are starting this process on Wednesday. Well, let me back up, she gets her counts done on Monday. She must be 750 to start the next phase. If she is, she gets a spinal tap and a whole days worth of chemo on Tuesday. Then Wednesday it is radiation in Cincinnati...and also chemo (ARA-C) brought to our house by home health care. And pretty much every day thereafter until May 21.

Tomorrow is Mother's Day. I will reflect upon that later, but I am not a huge fan of the day anymore. Unfortunately for me it is a double edged sword. I am a mother who is fighting to keep her daughter with her. And I am also daughter who has lost her mother. My wish is that noone should have to deal with either of those circumstances, especially at the same time.

Thursday, May 6, 2010

Stress

I am feeling burdened under so much stress this week. It is piling up on me and my back is hurting. Really hurting. And I am getting a cold too. Miraculously, I haven't gotten sick this WHOLE time, so not now please, not now. It is because I have had so much to do that I haven't been going to bed until the wee hours and then getting up early too. I am mad at myself. I am not good about saying NO to anybody, especially my kids. And Mother's Day coming up...well that is just seriously adding to the stress and also my emotional breaking point.

I got to fly to Pennsylvania yesterday for the DAY and see my grandparents (Mom's parents). It was quite a treat to see them. They are both over 90 (Grandpa 93) Grandpa picked me up at the airport and drove me home...to the home they have lived in for 60 years. And yes he is 93. He is amazing with a capital A. It was heartwarming to see them both. I can look right into my Grandpa's eyes and feel like I am looking at my Mom. It is good, but it makes me cry. And so does my Grandma, bless her heart, I love her so much and hate to see her hurting over losing her daughter. It still hurts. Some people think it feels better after a year goes by. My personal opinion is that it feels worse.

Adding to the stress....we are going down to Cincinnati Friday morning to have Ally's radiation mask made. We did find out that we have to go all the way "downtown" which is actually somewhere at the University of Cincinnati. The study protocol says she has to use a particular machine...and it is there. So there is where we must go. The good news is this machine actually works faster...so less time for Ally to be bolted down in her mask. The bad news is it is a further drive, more walking for Ally, etc. We will deal with it. I don't even have a single appointment set up yet...I am going to do that tomorrow, I guess. It is hard to imagine that I am going to have to line up help here every single day for Evan and Carly. Well, tomorrow, I am taking Carly with me. And my sweet neighbor Brooke bailed me out by watching Evan in the morning. (thank you)

It is pretty frustrating because they sent us to Westchester for our consult, etc, but it was never an option to go there. The younger kids can't go there, the older kids can't go there (at least the leukemia kids)...the kind woman who called me today could sense the frustration in my voice when everything got re-arranged at the eleventh hour. She was nice (and I wasn't being rude or anything) but she kindly suggested I have a glass of wine tonight. HAH!

I will report more after our appointment.

One more small thing. Hey, this might even be a way for some of you to help me with my stress:

So far we only have about 100 people signed up for/paid for the Ally's Army Battles Cancer party on May 22nd. However tons of people have told me they are going, but just aren't showing up on my list yet. If you plan to go, please try to sign up in the next couple of days! We are trying to get numbers to all our food/tent/bar, etc people by May 15th. It is coming quickly....we are making it an awesome event and we have some seriously good auction items up for grabs. And it is for a great cause! Here is the link:

http://soh.dayton.llsevent.org/allysarmybattlescancer

Also, we have secured a bus (56 passenger) to bring people from Junction City and/or Columbus and take you home that same night. I will put the details out here soon. Jessica Barnett has offered to coordinate this. Thank you sister!

Praying for Ally and for every other soul (adult or child) that we know that is battling cancer. When will there be a cure?

Tuesday, May 4, 2010

Radiation Details

This post is going to be primarily medical in nature. I want to try to remember all of the information that was presented to us today when we met with Ally's new radiation oncologist: Dr Brenneman. We are feeling a whole new level of stress today. Much of it is the fear of the unknown. The doctor had some comforting words. The doctor also had some disturbing words. Once again we must have faith that we are doing the right thing for our daughter, so we accept the latest challenge and keep moving. But it is definitely not without stress.

First of all, the appointment did not start out very well. This was due to some minor problems like they didn't have us on their appointment books and they also didn't have a chart for Ally. This sent me into a bit of a panic, after we drove almost an hour to get there, but they were very nice and got it resolved and eventually found the stuff in their office. Then we sat in the waiting room for about 20 minutes. And listened to a little boy crying and screaming. For the whole 20 minutes. Not exactly the best first impression that we wanted to give to Ally. Jerad kept eyeing over at me with the "what should we do look" but there was nothing to do except grin and bear it. Ally, in her infinite laid-backness and somewhat steroid trance did not notice much.

After a long medical history and exam, etc, we were told about the radiation. She will get 8 days worth (in a row) to her brain. It will be at 1200 units (whatever they are) which is a very low dose all things considered. She will lie flat on a table inside a machine that looks like a CT scan (well, I think it is actually that too). Like a big open tunnel. Her head will be bolted down by this mask like contraption that she is able to breathe through and also see through. But she won't be able to move her head at all. Every single time she will start with a CT scan, followed by about 5 minutes of radiation. The whole appointment should be about 30 minutes, 10 minutes of which she is "bolted down". We cannot be in the room with her, obviously, but they will have a camera on her and we can watch her on a TV. She can bring her own music which may drown out some of the CT noise. She was assured that she would not feel a thing and this may be the only treatment that she has had yet where there is absolutely no pain. This is all good.

The immediate side effects are: nausea, headache, hair loss, and fatigue. They think these will all be very minimal...nothing like what chemotherapy patients feel. But...she will also be getting chemotherapy almost every day during this time also.

The long term side effects...this is where most of the stress comes in for us. There are three things that could happen
  1. Learning disabilities/Focus issues. These could start to come about years down the road, when she is in high school etc. BUT the dr thinks the chance of this is very small for Ally. Because she is getting the radiation in a low dose and also because she is older and her brain cells are mostly developed. I think he may have even said a 1% chance of this. Very small. This was truly my number one worry. Because who wants to go through the rest of their life without the ability to focus. That would be horrible if you ask me. But I don't think it will happen to her.
  2. The radiation can affect her pituitary gland, which is responsible for her growth hormones. The radiation could cause her to stop growing and be shorter. BUT he also said they would watch her on the growth chart, and if she flat lines out, they could just put her on a growth hormone to make her grow again. This doesn't concern me too much.
  3. Her chances of developing a secondary cancer are higher later in life. Like 20 to 30 years down the road. Some studies show she would be 20% more likely, but then he also quoted her at being more like 10% chance. And the cancer would be a brain tumor. Most likely a benign tumor that could be removed via surgery, but sometimes the tumor placement is inoperable. We were shocked to hear this. I know a 1 in 10 chance is not very high, but when it is your own child it becomes much more horrific. But he assured us the risk was worth the reward, because leukemic cells like to hide out in the brain. And we have to make sure they are blasted out of there. She will be getting a total of 9 CT scans. I was told 1 CT scan is equal to 3000 xrays. So in a matter of 10 days, it is like she is getting 27000 xrays.....plus the targeted radiation! I will try to block this fact out of my head from here on out.
Our only problem now is that they are debating which machine they are allowed to use to be in accordance with her protocol. As of right now, she is supposed to use the one that is downtown by University Hospital. But the machine at Westchester is actually newer. They are trying to get it approved by the COG so that we can save an additional 40 minutes driving each day. And allow her to use the newer machine...which is actually one of very few of them in the whole country. They did tell us either machine would do the exact same thing medically though.

We are due to go back Friday for them to make Ally's mask. She has a spinal tap on Tuesday followed by some long chemo...a whole day. So we are going to try to start the series of radiations next Wednesday...go everyday and finish on May 21.

Ally laid on her exam table listening to everything. She is not scared. She is fine with it and told the doctors such. As long as she can lay still in the mask, we will be good to go. Kids under 6 are put to sleep to ensure they remain still. I think Ally will do it on her own.

The crazy part of this whole thing...she has radiation on 8 days. On seven of those days she will also be getting a chemo infusion (ARA-C) from a home health nurse. We are going to be living and breathing treatments and doctors, etc. Thanks to all who have offered to help us through this time!

So that's the story. The long story. The big push at the end of our first marathon here.

Monday, May 3, 2010

First Communion

Well it seems you all enjoyed the video that I posted prior from Ally's school. I still can't get over how moving that was. I still cry when thinking of it. Cried again today when I heard how great Lisa and Will did. And in the rain too.

I have been so nervous about Ally getting a fever. She is right on the brink of when she normally gets one. Thankfully, she has been alright and made it to her First Communion. This whole event brought a new series of emotions to the table. Seeing her in that white dress...it is almost like she is a little bride. I can't help but pray that I WILL get to see her be a bride. The day was somewhat marred by her being on steroids. Those hateful little pills cause her to go into a sort of catatonic state. She doesn't talk a whole lot, she doesn't smile much, and it is almost as if she is looking through you when you talk to her. And they also caused her to gain 10 pounds from the time I bought the dress about a month ago. (but it still fit, albeit snugly) For most of those girls, (and boys) it was probably an exuberant day followed by a fun celebration or party. For Ally, it was more going through the motions. I did get a few smiles out of her...and I think she enjoyed opening her presents while being swarmed by all her cousins/friends. Regardless of her mood, we were very grateful to have all of our family and friends with us to mark the occasion. She is getting to be such a big girl.
Ally with her godparents Melissa (my sis) and Brad (Jerad's bro)
With Jerad's parents
And her Pa
At the church, the veil just wouldn't work or look right, so we found this hat. Not ideal, but what can you do?

This is the rush by the kids to watch her open presents...

Jerad and I both notice how adultlike she is. She really has lost a lot of the childhood things...and rather prefers to do things that I do. On Saturday, before her communion, she was bored. So......she made lunch for Evan and Carly, emptied the dishwasher, made her bed and Evan's and Carlys, etc. You get the idea. She has spent so much time with me over the past year that all she knows to do are the things that I do as a Mom. She is my shadow. Always. So I am really looking foward to the day when we can adequately make the break and she can reenter into childhood society once again. (although it is quite nice to have her helping all the time) She is really such a good girl. I am proud of her and all that she has become.
Ally is having a horrific time sleeping. The steriods do that too. She just can't sleep...even with a few doses of melatonin. Thankfully she took her last two pills tonight and it should start to wear off in a few days. Tomorrow we are heading to Cincinnati to meet with her Radiation Oncologist: Dr Breneman. Another Dr. B to add to our hero list. I have no idea what all this is going to involve, well except a lot of driving and time, but I will report back when I know more. From the onset, this was the one thing that I really didn't want to do. Almost backed out of, actually. But that would have meant pulling her out of the whole study. It is with fear that I allow her to do it. I always have fear, but with this it just seems a little more severe. But we will do what we need to do. Whatever we have to do to rid Ally of cancer cells. Forever. Please God, let it be forever.

Saturday, May 1, 2010

Ally's Army Pep Rally

I have mentioned on here before that 2 friends are running the Team in Training Flying Pig Marathon in Cincinnati on behalf of Ally. One is her principal, and a friend of mine, Lisa Walk. The other is her PE teacher-Will Hamilton, who also so happens to be married to her current 2nd grade teacher! The Hamiltons spend a lot of time between them with our girl Ally. Lisa and Will have had to train in the worst of conditions all winter long and have raised over $5000 between them for the Leukemia and Lymphoma society with Ally as their honored hero.

Tomorrow is the big day....they are running! And it is supposed to be near monsoon conditions with heavy heavy rains. I am sure all their training will have paid off.

In preparation for their run, they held a pep rally at school to give Will/Lisa a good send off and give them an energy boost. Lisa got on the announcements and gave a wonderful talk about why they are doing this...that Valley is a family and family take care of their own...and (to paraphase) that it is hard work and sometimes when they don't feel like running anymore they just think of Ally and all the things that she has had to do that she didn't want to do either!

Then, about 600 kids lined the hallways of Valley Elementary and Lisa/Will ran up and down getting high fives from the kids. The whole time, the kids were chanting "Ally's Army...Ally's Army..." It was deafeningly loud and amazing to watch. It was one of the most moving experiences I have ever had in my whole life. I could barely focus through my tears, and it brings me to tears every time I even talk about it. All 600 kids...the Valley family...chanting one single chant. My girl's name. It was such an amazing show of support...for Will, for Lisa, for me....and for ALLY!

And what did Ally do? She blended right into the wall and sat quietly. Just taking it all in. She was in her "steroid trance" which was too bad because I think she would have been showing some ecstatic emotions if she felt normal. Luckily, I have the whole thing on video and can show her again.

I still can't believe what I saw that day. I saw it all through my clouded tears. Saw my friend sitting right next to me crying. Teachers crying. I even saw one of Ally's best friends all choked up in tears. It was amazing. They are amazing. Thank you Will and Lisa and Good Luck with your race. Thank you for running for her, but thank you most of all for being right there with us everyday...leaders of Ally's Army.

Watch the video..you will see. The cheers just keep getting louder and louder as it goes on.


video