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!

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.)

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.

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?

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.

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.

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.