Monday, August 31, 2009

Absent

So today I feel like a big failure. Ally woke up all on her own at 6:40, went to the bathroom, and then promptly burst into tears that she didn't want to go to school. And that is just an awful way to start the day. She said her belly hurt and I could tell that she really didn't feel well. I kept watching her eyes and she was falling back asleep, tired etc. The doctors told me when the kids ANC gets low like hers is (20) that they pretty much just feel cruddy all over. Jerad and I both pushed and pushed...she missed the bus....Jerad was going to drive her....then no. And she fell back asleep. She woke up around 8:30 and had a small temp (99.3)...well the doctors don't consider her to have a temp until 101, but it was something. I gave in and let her stay home. Within the hour she had perked up and was playing with Evan and Carly. They all went outside for a little bit and that is when I realized that she really should have been in school and I tried to push her again, but failed.

I feel so bad about this whole thing. It is killing me. I want her to go, of course, but it is also very hard to put a crying 2nd grader on the bus. A crying 2nd grader that has leukemia. If I could just get her there, I know the kind staff at Valley will be taking good care of her. And if not, I only live 10 minutes away. I guess I just need to be more forceful. There are going to be plenty of days that she will miss because she has to and I would rather avoid days like this. I know she doesn't feel 100%, but she was well enough to sit at her desk and do some work.

I don't know how to handle this whole situation. I know one thing is certain...the stress level of handling this every day is going to send me over the edge. Before bed she was crying a bit about going tomorrow already. So now I ALREADY have the bad feeling in my stomach and I will be the one that doesn't sleep tonight. And I will get to deal with this all again approximately 5 minutes after I have woken up tomorrow. (along with Jerad, of course) I hate the feeling of dread. And I will have to rearrange my day 100 times to be accommodating. And that is one of the hardest things behind this whole disease. I can never plan for anything. I always have to have a plan, and also a back-up plan, and simple things like will my family have milk for their cereal....well it may or may not happen. Right now I am back to feeling so mad about this whole situation that I just want to throw everything around me right out this window.

I will gratefully accept any ideas on how to get through this situation. I feel as if I have made a major mistake and set a terrible precedent today. I can't take it back. Maybe someone in the army can enlighten me.

Luckily, I did get to cool off my anger a little today. Only to be engulfed in a completely different sort of emotion. We had the Marcy Cup golf tournament today. Lots of women playing golf together to honor my Mom and also raise money for charity. It was the most beautiful perfect weather and I know my Mom arranged it for us. My Dad spoke to the group about how much golf meant to my mother and there was nothing she would rather see us do than golf in her name. I noticed that my golf shoes weren't fitting me right, so I grabbed my Mom's shoes. I walked the course today and tried my best (which wasn't too bad after I had only played once in two years). I thought about my mom approximately every three minutes. Actually, I could almost hear her talking to me the whole time. And there I was wearing her shoes....walking the course that she had played hundreds and hundreds of times. I felt very close to her today. She also channeled some good shots to us and the clutch team of me, Melissa (my sis), Julie Hess and Kim Grant finished only one over par. I was proud of that score! But mostly I was proud just to be with all the wonderful women that she counted as her friends. And to hear stories about how much they all loved her too. Mary Nutter...every time I see this friend of my moms I could just burst into tears. She planned this event...along with my Aunt Connie, Cindy, and the nice people at the Grandview Foundation. Mary has kept me under her wing...all through my Mom's illness and now all through Ally's. I am so grateful to have her to lean on.

One more quick note....I have to say Happy Birthday to our friend Larry Booher today. He is such a loyal friend and member of Ally's Army. Larry is one person we can always count on to do anything to help our family. So much that we always joke he is our "knight in shining armor" because he always seems to rescue us from difficult situations. He is also taking on a huge responsibility of helping us to raise money for Ally's walk on October 1. He has helped me more than anyone with this.

Now, I am saying a prayer that Ally wakes up and feels good. I hope the morning is easy for all of us. I need to find some strength to deal with all of this. I found this while searching.......

Be strong and courageous, and do the work. Don't be afraid or discouraged by the size of the task, for the LORD God, my God, is with you. He will not fail you or forsake you.. 1 Chronicles 28:20 NLT

Sunday, August 30, 2009

Unhealthy Weekend

The Barnett family has had a busy weekend of doctors appointments and lab tests. It all started on Friday. I put my boy on the bus for his first day of Kindergarten, sans Mommy. About an hour and half later, I was getting a call from the school nurse. I talk to her all the time, so I just thought it was Ally again. Oh no. She said that actually she had Evan in the clinic and he had just vomited in a trash can in the middle of the school office while on a school tour. Greeeaaaaaat. I rushed over to pick him up. He was pale white and could hardly walk down the sidewalk to our car. He was just doubled over with stomach pain. Crying and in pain. Evan is a pretty tough guy too, definitely not one to cry very easily. So I knew it was hurting him. Within an hour or two, he was just fine again. Eating, playing, and fine. This was actually about the fourth time this has happened in about six months. One time throwing up, pain, and then better. We decided we better get it checked out. Evan went to the doctor on Saturday....one urine sample, one stool sample, one blood test, two x-rays, and one uncomfortable rectal exam (poor guy) just to find out that everything looks fine. The only thought is that maybe he has a twisted bowel that causes the pain/vomiting and then it untwists itself. So next time it happens he has to get an x-ray very quickly to see. Some people may have thought it was nerves, but the other three times it happened were not "nervous situations" and anyone that knows Evan probably knows he is not the nervous sort.
Friday afternoon after school, Ally had her "quick" shot of Vincristin at a late appointment at the clinic. Which ended up being not so quick because she also needed platelets. Sometimes she needs the red blood, other times the platelets. So, we ended up closing the place down at 7pm. It just NEVER EVER EVER can be easy. She made it through though, like the trooper that she is.
Today, Carly woke up with a fever. She had also woken up through the night which is unusual. She was saying point blank that her ear hurt. Since we suspected an ear infection, we took her to the urgent care right up the road here and avoided the 3 hour wait at Dayton Children's. They diagnosed her quickly (and we were right, ear infection) and even had the medicine right there to start right away.
As of right now, I am feeling like we got nothing accomplished this weekend. The health issues seemed to take a lot of time. We were able to go to the charitable Lemonade Stand that I mentioned on here previously.
Thanks to the St Luke's Mom and Tots group for doing this fundraiser on Ally's behalf. It was a lot of planning and work and we are so grateful. They sold $60 worth of Ally's Army bracelets and also made another $250 to put towards the L&L Society for Ally's walk.

We also had HUGE success with the blood drive for the Light the Night Walk this weekend. Ally's Army had 15 people go to the blood bank to give blood. We definitely had the largest attendance of any team. I am so grateful to the people who took their valuable time to do this. Not only do we get about $400 for the Walk, but we replenished the blood supply for all those bags of blood that my daughter has used. I gave blood myself (first time) and it really does warm my heart knowing that someday MY BLOOD will be helping someone in need. I will definitely be doing this again. I must give special thanks to all these kind people.

Laramie Lundy
Jerad Barnett
Laurie Pezzott
Larry Booher Jr
Paulette (our home care nurse)
Catherine LeVesseur
Heather Shively
Suzanne Duplain
Lindsay McKay
Jennifer Zollars
Pam Booher
Larry Booher, Sr
Melissa Spencer
Jessica Neal
and ME!

Here I am with my sister and sister-in law right after we each became a pint lighter!
Please continue to keep our Ally girl in your thoughts. We have another week of school in front of us, and then we are looking at starting a new phase of treatment for her on Friday. This next phase is very intense and involves frequent inpatient hospital stays. It is going to be a tough time for all of us and I may be asking for more help as a result. Whatever it takes, whatever we need to do, we will just keep moving forward and knocking this disease out of her. For good.

Please also say a little extra prayer for my sister and I as we play golf tomorrow in a tournament to honor our mother called "The Marcy Cup" We have about 50 wonderful women who are playing in this outing to raise money for charity. We are establishing an oncology fellowship in Mom's name so that our local health center for the indigent will be able to provide cancer care to those who cannot afford it. All of my mom's friends will be there and I know it is going to be an emotional day. How many more emotional days can one girl take?

Friday, August 28, 2009

Blood Donations

A quick update about the blood drive today and tomorrow. When you sign in, please tell them it is for the Light the Night Walk and then there is a form for you to fill out. Our team name is Ally's Army. You can just indicate that and we will get the credit. More important than the credit, we will replenish some of the blood supply that Ally has used.

The blood bank has only been open about an hour and they have already had four of our Army members there. Thank you Laramie, Laurie, Larry, and Jerad for starting us off.

I am going tomorrow morning as is my sweet sister in law Jessica who is driving all the way from Columbus to do it. That is a loyal Aunt I tell ya. Aunt Melissa is also joining me. I am scared to death, but after all the things that I have watched Ally do, this is very small....

Thanks again for all the help!

Thursday, August 27, 2009

Leary

Leary. That is just how I feel all the time. I never know how I should feel about something... I think good and then things go downhill...I think bad and then things are ok. For example, I was very leary of sending Ally to school today. I don't know why, but she just got blood and I just wasn't sure. I asked Jerad, my trusty sidekick, and he said without a doubt we must send her. His reasoning was that there was nothing outwardly wrong, and we have to set a precedent. She didn't ask to stay home or anything like that. So if we let her stay home just for no reason, than we won't have anything to stand on. I think I was just feeling tired so I thought she must be too.

So I sent her and sat here with knots in my stomach yet again. I waited until about 8:30 and called her school nurse, who has been doing an amazing job at keeping me updated. I wanted to tell her about Ally's port remaining accessed until Friday, just in case. She said she thought all was fine. A little later Mrs Hamilton sent me a quick note that Ally was having her best day yet. And then several friends told me the same thing. She had a GREAT day. She came home all happy and full of energy and told me she made a new friend named Rachel. And then she said "Mom, everybody knows my name at school. Everybody" I said, what do you mean, all the teachers? And she said "yes...all the teachers, but all the kids too." I told her well it is just because you are so special....and everybody is rooting for you. Ally's army now has a whole bunch of kids from Valley in it. I see all of the bracelets! Evan and I decided to make her a brownie cake to celebrate the fact that she made it a whole day, without calling or breaking down. She is such a trooper.

Speaking of Evan, today was his last day off. He only had school on Tuesday due to the way they stagger start the kindergarteners. So while Ally and Carly were at school, we had some time together. With three kids, one sick and the other one only two years old, he doesn't get all that much attention. So we went shopping and picked out some new shoes for school. Then I decided to take him Putt-Putting, which is pretty much his favorite thing to do.
We had fun....oh yea, and then we made the cake. Anyone that knows me well...I am not a baker. I love to cook but I don't like to make desserts and I really don't even much like eating them. Weird I know, but I would rather just have popcorn or something. So this really was a huge thing for me.
Ally had such a good day that she wanted to do her homework right as soon as she walked in the door. I was trying to talk her into a break or a snack, but oh no. She even had enough energy to play....here she is with Carly and the play-dough. Man they are cute together. They absolutely never fight and they both just love each other so much. (I can't say the same thing about either of them with Evan)
I just saw all three kids shoes laying on the kitchen floor (UGH) ...And I just noticed that the shoes I bought for Evan are surprisingly similar to the ones I got for the girls. I didn't even plan it but all three have similar shoes. They are even from three different stores and Dad picked out and bought the ones for Ally. And I am very proud to say we got them all for the average price of less than $30 each. (my mom would be so proud of my bargain hunting skills)
Sorry for the tangent. So after the great day, she gets ready for bed and now she has a rash! Man, it is just always something. Now I am leary again. What is it? Maybe it is just a bug bite...no other mom would think anything of it, but with her...I just never know. Should I start researching rashes? I just went in and inspected her with a flashlight and I believe it is gone. My nerves are so frayed and I am only three days into school. I truly have to live by the motto of taking each day as it comes.

Speaking of that, tomorrow, Friday, our typical treatment day but Ally's appointment is not until 3:30. She is already accessed (we just kept it in from the blood yesterday and saved her a poke) and she just needs a push of Vincristin. That shouldn't take long. So the plan is just to take her down to the clinic after school. Starting in September, we have some seriously long rounds of chemo coming up. I will write more when I know the plans, but we are looking at 4 different inpatient hospital stays of 3-4 days each between now and mid-October. That is quite depressing to look forward to. So I will just look to tomorrow.

Last, but not least, some very generous people from St Lukes are hosting a lemonade stand/garage sale on Saturday in honor of Ally and another ALL patient we know named Lincoln. It is from 9-1. All of the proceeds will go towards Ally's walk and the L&L society. It is right off Dayton Xenia Rd in Cape Cod Colony right by the high school in Beavercreek. I would love to send some people their way. Stop by for a drink after your sporting event. And tell them you know Ally. We will be stopping by and also giving blood that day in Ally's name.


Tonights prayer is that nothing changes in the middle of the night and we just have a normal day tomorrow.




Wednesday, August 26, 2009

Surprise hospital visit

It has been a little bit of a crappy day. Ally did get up and go to school. We noticed this morning that our typically pale girl was looking REALLY pale. She ended up calling me by 750 am (school starts at 745) and was weepy and her belly hurt again. Again, her school helpers thought she was homesick. I tried to calm her down, but didn't really do it. The nurse called me back about 15 minutes later and said she went back to class ok. Mrs Hamilton sent me an update that she did pretty good this morning at school and recess.

Because of the paleness and also our general intuition, we decided to call the clinic and just have her blood drawn today. On Friday, her hemoglobin was at 8. Usually when it is at 8 they give her blood. Actually, I think they always have. Well they didn't on Friday, but said to wait until this Friday. We pretty much knew she needed blood and better to make her feel better sooner than later. I stopped by school, pulled her out of recess and put her emla cream on. Jerad picked her up from school about noon and headed to the clinic. Her hemoglobin was 6.1!!!!! Last weekend, they told us anything below 7 was cause for worry. Geez. So she needed not one unit, but two units of blood. The doctor assured me this was typical. She just seems to be getting blood a lot lately.

We noticed they were infusing the blood into her at a very fast rate. Usually it takes 3 or 4 hours to do one bag, and they did two bags in a little over two hours. Not sure why, and looking back we probably should have asked. Jackie came over to stay with E and C and I went down to relieve Jerad as he had a work meeting. Soon after he left, she started getting real shaky and crying a lot. Asking for her Daddy (of course) Maybe I should say yelling for her Daddy. Which also made me feel quite worthless at that point. (why does she always want the parent that is not there?) Pretty soon she was vomiting uncontrollably and I got worried. I got my anti nausea drug out of my purse to give her and in my rush spilled all ten of the pills all over the germy floor. Things were just not going well for us. So then we had to wait 20 minutes for them to "tube" up a Zofran pill from the pharmacy, the whole time she is crying about wanting to go home. We are kinda wondering now if the blood was infused too fast or what the deal was. She hasn't had chemo in five days. I got her home about 7pm and she seemed to perk right up. She seems better now.

We also found out her ANC is 130 (very low) which means she is susceptible to infection. I asked the dr...are you sure, sure you want me sending her to school. He keeps saying YES. Absolutely yes. I think his exact words were that after this is all over, her life must go on. So it is best to keep her going. He says most chance for serious infection comes from within her...and unless chicken pox is going around the school she would be able to fight anything there off. I told him about one of my leukemia friends that I met from New Jersey...her doctors don't recommend school during the intense phase. He said it is a difference in opinion..some docs are ultra conservative and some are not. He said, unless you put her in a bubble and only feed her sterilized food, she is going to be subject to the germs anyway. The germs will still enter into her environment on us, food, etc. And we all know that I can't do the bubble and boil all her food. So I guess when I start worrying can you all just remind me of this????

Please remember that the blood drive where you can earn credit for Ally's Army is this weekend. I have talked to several people that are doing it! I need to go sign up myself! Again, the details are:

Friday August 28th & Saturday the 29th at Community Blood Center (349 South Main Street downtown Dayton)
Each registered team member who donates during those two days will receive a $25.00 credit to your team!
Reservations STRONGLY recommended either call 800-388-give (4483) to make an appointment or log onto www.donortime.com Space is limited.
You can also register to win a Honda Civic as part of CBC’s promotion “Do Your Civic Duty”
Hours are 7am-4pm Friday and 7am-12pm Saturday

Please continue to pray that Ally has normal days and stays free of all germs!

Tuesday, August 25, 2009

The day is done

The day is done and the three kiddlings are all snug in their beds. This is also where their Mom would like to be as I am just exhausted. After all the trial and tribulation of last night with the vomiting and crying and all...I just could not sleep. Imagine that. The stress had my stomach all in knots and even Jerad was stressing out. We talked about what we would do if she wouldn't get on that bus...and basically about how much this SUCKS yet again!! I proceeded to pray and pray and worry and pray for most of the night. When the alarm finally went off at 6:30 am, we took a collective breath and went in together to wake her up. It wasn't easy and it never used to be either. It is early! But she got up, walked downstairs and we never heard a word about not going. Whew. She only ate about 10 cheerios, not ten bites mind you, but 10 actual cheerios and a swig of OJ. We carefully picked out a new outfit and also chose from her selection of about 60 hats. We walked out the door, took a picture, and off we went to the busstop.
We have a huge amount of kids at our busstop. 12 here and 14 come off in the afternoon! Gotta love that we have so many kids on our little court though.
Madison was sort of "in charge" of taking care of Ally. Sitting with her on the bus and also walking her to her classroom. Thank goodness for her. Her little brother was also a little upset so she had double duty today. I watched her face. She looked at Ally, turned to look at Caulin, grabbed both of their hands and took them to the bus. I could see her processing in her mind that they both needed help. And help was there. Ally got on the bus and Jerad and I breathed a collective sigh of relief. I actually turned and walked back down the street choking back tears as I quietly celebrated this victory with my neighbors. About 9am, after dropping Carly at school (story coming up next) I got a call from Ally. She was already crying. She said her belly hurt "really bad" Ally was calling me herself and I honestly didn't know what to do. I pulled my car over and just started talking to her. I asked her to run through her day so far. What had she done...did she eat...was everyone nice...then I reminded her how strong she is. I asked her if this was as hard as going to the hospital every week. Of course she said No. I told her...you go get all these things done to you every week, and school is NO BIG DEAL right? I assured her that I would be at school to visit her because I had to go to school with Evan for his first day. She reluctantly said ok and actually never asked for me to come get her. This whole ordeal shot my stress level up again. My friend Suzanne who was at school checked on her, the teacher sent me an email...she was doing ok now. When I got there she was out at recess holding her friend Madden's hand. Kids were all around her. She was also fine when I saw her in her classroom. I popped in and said hi. I could kinda tell that she didn't want me there. I said "you want me to leave don't you?" and she shook her head yes. She only had about an hour left at school and I knew she would make it. When she got home I kept asking her if she was tired, and she kept saying no. She said everything went fine and she said "Mom, lots of people want to talk to me and be my friend" I was so happy. I told her she was just like a famous rock star at school...everyone knows Ally. Seriously all of her friends just want to be around her more now. And all of the kids in her class were wearing their Ally's Army braclets. Wow. Maybe something good will come of this....
Busy doing her work and ignoring me

CARLY GIRL
Carly also did really well at school. She was all decked out in an apple dress from her godmother, Mrs. Winger, and carried her Hello Kitty lunchbox. She was so cute. We got all kinds of pictures and her big brother held her hand as they walked in. (all on his own)
When I was putting her stuff into her cubby she started to cry. Oh man, she hadn't cried at all the other times. Her nice teacher, Ms. Sarah, picked her up and she waved to Evan and I out the window. I walked out to my mailbox there and grabbed some paperwork. By the time I came back into the lobby her teacher said she was done crying. Maybe 60 seconds. Whew. Again. Upon picking her up I heard that she did wonderfully. Never another tear and she loved the baby dolls, the dora game on the computer, and playing with legos. She ate most of her lunch. She ran and gave me a huge hug when I walked into the room.

EVAN
Last, but not least, my baby boy started Kindergarten today. I made a huge deal out of it. We had some one-on-one time before his bus came at 11. We worked on riding his new bike and I taught him how to play jacks (my mom would be proud of that). He ate his lunch at 10:30 (yep) and we went out to catch the bus around 11. Turns out he was the only Kindergartner on his particular bus today. The staggered start and a few kids who they missed played into that scenario. I followed the bus as we were to meet him at school to do a couple of projects together. He did really great tracing, cutting, writing, coloring...all fun things. His teacher seems fantastic and was very nice to mention to the parents about Ally and all the sicknesses we have to watch for. I left him there with strict instruction on how to get to his bus and awaited him to come home at 2:30. I was scared for him riding the bus this way, because all the kids are on it on the way home. Of course, as soon as he gets off I hear about him getting bullied on the bus. He was in the first seat, but a couple boys were pushing him into the window. He told them to stop but they wouldn't. Madison (savior again) saw it and asked if he could move back and sit with Ally. So he rode about halfway with his sister. He said he didn't cry, but "almost did". Here I was worried about Ally getting bullied and it was Evan. Don't worry, his Dad had a big discussion about this with him tonight and hopefully he gets to sit with his friends when he goes again on Friday.
All excited. No tears.
Can you see him peeking out?? BYE Evan.
He really was working hard today...
So.... a few glitches for each of them but also a few nice people who helped them all out along the way. Prayers were pretty much answered. And now I can go to bed and worry about doing it all over again tomorrow.

Monday, August 24, 2009

School Tomorrow

And so it begins...school tomorrow for all 3 (yes three) of my children.

Carly: She is going to a two day a week program at the Goddard School on Tuesdays and Thursdays. She will go from 9-1, which means she eats lunch there (and I just packed it) This is not really for her to go to preschool as much as it is to compensate for the babysitter that I just lost so that I can do my minimal accounting job. I had used Priscilla every Tuesday since Ally was 1. We loved her, but she lives 30 minutes away. She wasn't going to drive all the way here for just one child, and I don't blame her. So I found something else and I think she will like it. Carly should be good to go. She is not too shy and pretty mature for her age and also the third child. She went for an hour the other day and fit right in. No tears.

Evan: He hops onto the Kindergarten bus tomorrow around 11. So he will be running Carly to school with me and then having some time with Mom before school. His school is only 2 and a half hours. He will come home with all the big kids at 2:30. He seemed a bit nervous tonight, mostly about finding things (his room, the bus, etc) We read the typical "night before Kindergarten" book to him tonight. I am sure they will help him and he will be fine. He is a bit quiet at school (so they tell me...and NO he is not like this at home). Jerad and I actually go with him tomorrow from 11:30-12:30 or something like that.

Ally: Ally is going into second grade. She has been blessed with another wonderful teacher I can already tell. Her name is Mrs. Hamilton. The funny thing is that my second grade teacher was also named Mrs. Hamilton. She has been following our story this summer and seems to have thought of a lot of activities to make this transition easier. She has made a lot of accommodations for Ally including bumping their art class from Friday (when Ally will be at the hospital getting treatment) to Wednesday when Ally can go. She knows this girl has the artistic side to her. She has a lot of ideas and I can already sense that she cares. She has two young kids herself. So she knows.

Ally was all set to start school. Last night I asked her if she wanted to start or not really. She gleefully said that she wanted to start school. Tonight, she went to bed and then she woke up an hour later crying. She threw up a lot. She probably throws up two or three nights a week. Of course, tonight was the night. Never ever during the day, but a lot at night for some reason. So then she started crying that she doesn't want to go to school. So now I have the same pit in my stomach that I had last spring when all of this began and she didn't want to go to school (and I didn't know that she had leukemia). It is just an awful feeling. Well this whole thing is awful, but I hate not knowing and having that stress every single morning when I first wake up. We used to do this whole song and dance and everything just to get her to the busstop. Really...school starting is nerve-racking enough even for the most normal kid, so for her it is ten-fold. It is nerve racking for the normal parent, but for me it is horrible.

Everyone at Valley will take care of her. I know. Her teacher, the nurse, the disability teacher, the principal, anyone will help her. I just have to get her there and hope she can handle it. She has been doing so good, but right now I also have a feeling that she needs blood again. We can see it on her pale face and she is bruising like a banana.

Please say a prayer that all goes as planned for her during this transitional time. I do think if she gets off to a good start it can make all the difference in the world for the upcoming year. If she just gets on that bus in the morning with no tears. Just a simple request.....

Sunday, August 23, 2009

I.AM.BACK.

The Barnett 3 with Grandma Josie and Grandpa Jerry

















I.AM.BACK.
I haven't blogged in a full four days now. I think it is like exercise, once you stop it is hard to start back up. Not to mention that I may lose my job anyway because of the amazing posts made by my husband. He is a tough act to follow and took such good care of Ally while we were gone. I want my turn with Ally. I told Jerad that he better head out to Junction City here soon and leave me here with her. It is weird how our family dynamic has changed over the summer. Jerad seems to take care of Ally (when he is here, of course) and Evan and Carly are more mine.

So back to my last few days spent in Erie Pennsylvania with my family on my Mom's side....We had a nice trip. Memories that I will forever hold in my heart. After our drive there, 5 hours of which I drove most of them, we arrived at my grandparent's house. This is the house where my mom grew up. Quite honestly, it is the only link I have to my childhood. Every other house we have lived in, or my other Grandma, Aunt, etc...they are all gone. This is the only place I have where I can say, yea I remember sitting right under this apple tree.

I remember going down the cellar stairs. When I walked in to their house, there is a distinct smell, a good smell, that can bring me right back to being five years old again. The door still creaks the same exact way. Everything is exactly the same, down to the same little chicken gravy boat sitting on the shelf in the kitchen. I love it. I NEED to feel my childhood again..I can almost hear my Mom's voice while walking through there. Of course all of these memories brought a wave of emotion over me that I cannot begin to explain.

This is my special tree there. Probably 100 years old. Every year my grandfather sends me a leaf from this tree in my birthday card. He always tells me it was the last leaf to fall...on my birthday.



















The welcoming front porch....

My grandparents are 89 and 92. My grandmother was too frail to make it down for my Mom's funeral services. I had not seen her since Mom had died. I hadn't even much talked to her since she is hard of hearing and difficult to have a phone conversation with. Well she is about half my size now too, and she just held me and held me. We cried. We sat on their back patio and had a heart to heart about everything that has happened in the last five months. Crying big huge tears over the woman that we both have lost, my mother and so painful for her...her child. And the unfairness of it all...now I am also feeling the pain of having a child going through cancer. She couldn't understand how the world could be so unfair, she kept asking, what did we do to deserve this? Of course, I don't have an answer for her and I often wonder the same thing. My dear sweet grandmother. She doesn't deserve the suffering. She is one of my favorite people in the whole world. I felt so lucky to have this time with her.




















She told me that she looks at this bird globe in her garden every day that my Mom gave her. And she just thinks of her. I bought my Mom the same bird globe once. And I am going to get it out of my Mom's garden soon!
























We loved spending time with my Aunt Gail, Mom's sister, and Uncle Bill. Uncle Doug (mom's brother) and Aunt Barb. My Aunt Gail has stepped in and helped me throughout this ordeal with Ally. She is pretty much the closest thing that I have to my mother now. I am lucky to have her. She lives in Brooklyn, New York and/or Pennsylvania some of the time. We took the kids to the Erie Zoo together, just like old times when I was a little girl. No one loves the zoo more than her. But I am next in line. We had a great day.



The kids also enjoyed staying two nights in a hotel, with Carly sleeping in a "big girl bed" with brother "Nonni" as she calls him. We would fall asleep all three of us together watching Animal Planet every night. One child in one arm, one in the other. It was definitely hard to travel by myself with two little ones, but I would do it all again. Here they are enjoying the ghost stories that Pa told them each night.
It was good that my Dad got to get back to his hometown. Talk to Grandpa Jerry a lot and remember old times. Today would have been my parents 40th (40!!!) wedding anniversary. So a bit sad today for my whole family.

Well if you are still with me then you have made it through my onslaught of the Erie trip photos. I did spare you the slideshow. I have many more stories and things to remember, but I will leave it from here. Most of you just want to check in on our girl Ally. She is doing well, going to a birthday party for the Sidwells and a back to school ice cream party at the Hess's today. Yep, back to school. It's gonna be okay. More on that later. For now, I will go to sleep to wake tomorrow to the last day of the summer of 2009. A summer that I would rather not remember. I am glad it is over. Good riddance. We start with a clean slate on 8/25.....

Saturday, August 22, 2009

One more quick post from me before Janel gets back. Ally's treatment went well yesterday, but of course longer than planned. We started off by putting her EMLA cream on. This is the numbing agent that helps with her "pokes". I had to take her picture with it because it really is a miracle worker - you can see it on her port in the picture.
We had to put it on both thighs as well for the 2 shots I mentioned in the previous blog that I was worried about. But, she did great with both shots in the legs (although she did scream "I want my Mommy" right before they did them!), even saying afterwards that it did not hurt nearly as much as the first time. Just as we were about to leave around 11:45 a.m., they said her platelets were low and she needed to be infused. Platelets can be infused in about 30 minutes vs. 3 hours or so for red blood cells, but Murphy's law would naturally dictate that they did not have any of Ally's type of platelets in the entire hospital so we had to wait quite awhile for them to courier some from the blood bank. So while we had some time to kill, I thought we'd take some pictures of a few of the many people working to save our daughter's life. First is our hero, Dr. Emmett Broxson (aka Dr. Broccoli, but Ally hasn't worked up the nerve to call him that yet):

He has been at Children's since 1986 and seems to know everything there is to know about leukemia and pediatric cancer in general. I got acquainted with him prior to this when I joined the Board at the Hospital last October, never knowing I would someday need him to help save Ally. He was impressive before he started treating Ally and even more so now that I know him better. Two other physicians, Dr. French and Dr. Dole, are also fantastic, and we are lucky to have such great physicians right here in Dayton.

Next is our nurse for the day, Nurse Amy:

All of the nurses including Amy are amazingly good with Ally and the rest of the children in the Hemoc area. Their compassion and understanding makes an awful disease much easier on Ally. You can tell, as I hear often on the Board, that turnover is very low in the Hospital and that most of the nurses are seasoned veterans with children. Ally even got to pick out some nail polish from the toy box because Amy said she did such a good job with her shots. So at 3:15 we finally got the platelets and were headed out of the Hospital around 4:00. So much for our quick 2 hour visit to the Clinic, but it never goes that way. What was a little more disappointing was that Ally's ANC count was 243 which meant no movie with Daddy, something she was very excited to do. Instead, we stopped at the video store on the way home, and with Ally's laid back attitude that was just fine as well. She was supposed to have her first sleepover of the summer, something she normally would have done several times by now, at her friend Madisons. We went over there for our "fantastic friday" as we call it, where we have pizza (and a few adult beverages) and rotate hanging out at one of a handful of different neighbors houses. Ally and I got ready by putting on our Fun Hats that a neighbor of ours is kind enough to occasionally drop off for Ally.

While the adults went to battle over our new favorite game, Sequence, the older kids set up a full service nail salon in the Booher's garage including massages by Joshua and warm foot baths and pedicures by Ally, Madison, Kate and Abby (Brownell). I apparently tipped well early in the evening so I received a free massage and pedicure! I was forced by the nail team to close my eyes the entire time, which resulted in the following artwork on my toes (Ally, Madison and Abby are grinning ear to ear because I requested ONE solid color and received what you see below instead!):

Caulin Booher also took part in the action. I thought this picture of him chillin' with some lemonade while Kate painted his toes was hilarious!

All was going well until about 10:00 when Ally came crying over to me and said her belly hurt and she wanted to go home. Alas, her first sleepover was not meant to be. I think she was really just tired after a long day at the Hospital, as she recovered quickly once we got home and slept pretty good through the night. Maybe next time for Ally, but as always she just rolls with the flow...

Thursday, August 20, 2009

The guest poster strikes again. While Janel is in Erie with family, it's Dad's turn to reflect on the day...

It certainly was a long one. Ally woke up a couple times between 2:30 a.m. and 3:30 a.m. and finally said she wanted to go downstairs and sleep in a recliner because her shoulders and head hurt. This was a new one, she's never complained of this before, so she started downstairs and I went to her room to get her blanket and pillow. The next thing I hear she is vomiting at the bottom of the stairs. I raced down to find her pretty much done at that point and clear liquid all over the kitchen floor. She said she felt better and I layed her down on the couch and proceeded to clean up and sleep in the recliner next to her. Unfortunately, that was followed by another round at 4:30, 6:00, 7:30 and 9:00. Pretty much like clockwork every 90 minutes. It was never much more than liquid and after sleeping from 10:00 to 11:30 or so, she was fine the rest of the day. Just another one of those side effects and/or mild illnesses that Ally faces that the rest of us are fortunate not to have to deal with.

So with Janel, Evan and Carly hitting the road at 9:30, and Ally too sick to go with the Boohers and Wingers for the planned "Kids Fun Day", I had to quickly do a 9:00 a.m. conference call from home and bag 3 other meetings I was supposed to attend today. This has become routine, but I am lucky to have a great team at Synergy that is willing and more than capable to cover for me at a moments notice. It's easy to take for granted how flexible my schedule is, but I am thankful for it everyday and I don't know how we would get through this without it. Full time for me is now 4 days a week (and a few late nights for those that know me) with Ally's treatments every Friday, and it seems everything I schedule is subject to change with a phone call from Janel about Ally. So a special thanks to Team Synergy for all the help and peace of mind you provide Janel and I.

The good news out of all of this is that it did give me even more time with Ally. After her nap, she was ready to get her "game" on. She is like me in that she loves games and competition. So we played electronic Deal or No Deal, a favorite of Ally's, and yes I picked the million dollar briefcase but the CPA in me struck a deal at $223K! We also played checkers and then I decided to teach Ally how to play chess. Something I would never do on a typical day, especially with brother and sister around, so it was special time for the both of us. I even made her a little Chess cheat sheet. For puking all night and morning, she was really into the different pieces, the unique moves for each piece, and the overall strategy. For me it's another of many moments that I sit back and think how old she's getting. While uploading some pictures for later in the blog, I noticed the last picture we took (on our little pocket camera, not Janel's big daddy Canon) BL - Before Leukemia as Janel says - and couldn't help but think that Ally has aged years in maturity since this picture. Ally in her braids, the 3 of them playing Ring-A-Round-The-Roses while we waited for our taxi at Atlantis in the Bahamas. Four days later, the next picture is of Ally in her hospital bed.

She looks much healthier in the picture, of course she is 79 pounds with a little chub versus her current 67 pounds and frail frame. But it is more than that. She was a little more innocent then, a little more carefree. I believe that's why she seems much older now, along with not having hair. I really struggle to picture her with hair, almost having to resort to pictures. I know Ally is still Ally, and I know and can't wait for her beautiful RED hair to come back, but I'm sad that her innocence never will.

Back to the day...after all the games and a bath for Ally, we had to take our beagle to the vet because of some heart issues he's having. They wanted to do X-rays so I asked Ally if she wanted to go to Krogers, Tim Hortons, the library...WHOA! When I said Library she really lit up. She hasn't been all summer because of her counts, but they were still good last week so I figured we could go (and just scrub hands like crazy, which we did). We were there for 30 minutes, and she said as we left that she only wished we could have stayed for a LONG time, like a half an hour! The next event was the Dayton Dragons game. Ally was very excited because I took Evan a month ago to a game and she saw all the pictures and heard about the fun, and because I told her we were in the front row, right behind home plate. Special thanks to John Lee at Siebenthalers who read the blog about Evan and offered me his tickets for tonight. We had a blast! For some reason most of the seats around us were open, and it was like Ally and I had our own little bubble to enjoy each other, the game and some great weather. And of course pizza, peanuts, Graeters ice cream, and a beer for dad. After 8 innings, I finally convinced Ally we had to leave because I promised her Mom I would get her in bed at a reasonable hour, but she REALLY wanted to stay until the end.

Suffice it to say that day 1 with Ally started a little rough, but ended great. Maybe the puking was God's way of telling me to take 2 days off with Ally instead of 1, who knows?! But make no mistake I miss Spank and Moosh (aka Evan and Carly) and my lovely wife too, and from what it sounds they are having a great time in Erie. In talking with Janel, today was a little tough because of so, so many memories, but she's happy she was able to make the trip. She'll of course tell you all about it in a few days, but I hope she enjoys a little break from blogging!

Here are a couple of pics from the Dragons game.



Say a prayer for Ally tomorrow - she has to get 2 shots, 1 in each leg, of something called peg-asparaginese, that go deep into the muscle and are the most painful shots or procedure she's had throughout all of this (no sedation). But like a trooper, she knows that's the agenda for tomorrow, and she still went to bed smiling. We should all be so strong...

Wednesday, August 19, 2009

Signs

Today we went to Ally and Evan's school. It made me quite happy, not because we found out the teachers and picked up the school supplies, but mostly because everyone was so kind to Ally in the hallways. She got many hugs from friends and teachers and the principal even gave her two custom-made Valley hats. The only two hats like them, she tells me. To make me even happier, she ran around school with Madison ...talking, laughing, and even showed her brother the "big kid" playground. When I told her it was time to leave she fought me. She wanted to stay. I had talks with the school nurse, her principal, the counselor, the secretary, Evan's teacher, and even the PE teacher. I am talking to her actual teacher over the weekend. They sold 50 Ally's Army orange bracelets at the sale, and I ordered 50 more..mostly to give her class.



Tomorrow I am leaving Ally until Saturday to go visit my family in Pennsylvania. I have 2 grandparents, 2 aunts and 2 uncles there to see. My mom and dad were born and raised in Erie. I was also born there and lived there as a child. We have always gone back, every year. My grandparents live in the same house as they did when Mom was a little girl. It is going to be sad for me, I know. Emotional for all of us. I know that I am going to be searching for signs from my Mom. My Dad said to me last night how excited he was to go with me. And then he said "Mom is up there just beaming that we are doing this." Because all of the family we will see will be on my Mom's side. She would be so proud that we are going. I arranged it all..did it all myself this time...it was always her job. Now it is mine.



I have been saving this story for a long time. This is the story of my fire rainbow. I wrote this excerpt on Mother's Day..and posted it to another blog I was doing at that time. BL Before leukemia. But it was such a miracle to me, and everyday I look at these pictures...they are the wallpaper on my computer actually. These pictures give me so much hope. There is such a greater power over me. So here are my pictures and my story copied in:
30 seconds before the rainbow, the cloud looked like this
In an instant, right after I took the last picture, it looked like this

The most amazing thing happened to me today, on Mother's Day. I can hardly even describe it, but I will try. After going to church with my whole family, and brunch, we went back to my parents house. I was standing in their backyard and the kids and Jerad were messing around on the hammock. I was just doing my normal...searching the skies, looking for my mom. Feeling so sad about this Mother's Day on which I don't have a mother to celebrate anymore. I had my camera on my shoulder and I decided to take a picture of the beautiful bright blue sky with the big fluffy white clouds in it. I looked down at my camera shot and then I looked back up at the sky. There was the most beautiful, colorful, RAINBOW where the cloud had just been. It wasn't shaped like a rainbow, but shaped like a cloud!! It had the brightest, most awe-inspiring colors in it. Red, orange, blues, purple...I saw them all. I was in such shock because there was no rain, it was the most beautiful sunny day. I yelled for Jerad and the kids to look at it. Ally ran into the house and brought my Dad out to look, too. It was only up there for about sixty seconds. Not long, but amazingly enough, I also had my camera right there and got pictures of it. I have never in my life been so amazed by something. On the way home from Columbus yesterday I had told Jerad that all I wanted for Mother's Day was just to see a sign from my mom. He told me that he had been praying all day that I would get my sign. I sure did get my sign. Loud and clear. I know from my friend Lisa that the rainbow is a sign of God's promise. I feel so much peace in my heart that I was given this gift today. The day was horribly hard, lots of crying, lots of feeling bad, but the rainbow was such a gift to me. In my whole 36 years, I have never seen a rainbow, unless there was also some rain. This is like some email that people forward around, but it actually happened. TO ME! What are the chances? What are the chances that I would have my camera right there when it happened? She was watching over me. She was telling me that she is okay and she is happy now. I love my mom so much. In life and in death. She is with me always. PS...these images are straight out of my camera and not enhanced in anyway. I also think the cloud looks like a birdie. You can really see the Red, orange, yellow, green blue, purple in the third picture.
Hoping Jerad will post for me while gone.....

Tuesday, August 18, 2009

Together we can do so much

Ally had another good day. More swimming, playing with her cousins, water balloons outside, and she even attempted (not successfully though) to try out her brother's new scooter. I am probably boring our blog readers with normalcy. I so much prefer it this way though. We still get some complaints of belly pain, leg pain, etc, but wow have we come a long long way. I am so grateful.

I remember, back at the beginning, I would be walking around, through the grocery store let's say, and having all kinds of almost resentful thoughts as I looked at the people around me. I would look at somebody and think I bet they don't have to worry about going to the hospital tomorrow...they don't have to worry that they will be up all night with their child...they don't have to worry about their child missing a bunch of school...and yes..the big one...they don't have to worry about their child dying. Why did I have to have all this stress when everyone around me just had normal stress? I would look out the window at all the neighbor kids who were running around or on their scooters or sliding down the Bonzai slide, and I would get so so sad. But now, I am pretty much done feeling sorry for myself. I am done wishing and hoping I was in someone else's shoes. I have accepted our fate and we are dealing with it. I still worry about what the future holds...I was actually doing some research last night that said these kids aren't considered cancer free until 10 years after her last medications. She will be out of high school by then!

This is not to say I am not anxious right now. For every parent's worry about the start of school, you can multiply that by 10 for me. I really would like to talk to Ally's teacher, the school nurses, the PE teacher (that's gonna be hard for her), her principal...I even really want to talk to the school secretary that hears on the absence line all the illnesses going around. Not to mention that my middle child is starting Kindergarten...that in itself is stressful. So much to think about, and here I am heading out of town to see my aging grandparents. It will all get done, it always does. Two weeks ago, I would have been skeptical that she would go...but I am really feeling that she is going to be able to go almost every day for now. (not Fridays of course) The lack of air conditioning is one of my biggest worries...I think the heat will wipe her out. It did even when she was well.

These are all good worries to have though. It could be so much worse. We have met many sick kids along our path so far. Ally's little friend Maggie, who is also an ALL patient but is only 2, is having horrible side effects and diarrhea. These parents are worried that she will have to go back on IV nutrition in which case they are forced to deny her all food. Which must be terribly difficult. Another six year old friend we have met, Jackie, who has kidney cancer, was back in the in-patient unit on Sunday with a fever. And the nurses told me there were two other "really sick hemoc patients" on the floor. Please say a little prayer for these friends of ours.

Which brings me to my final thought...a huge grateful feeling in my heart for all of you who have signed up to walk with us on Oct 1 (I think including kids we now are up to 125) and for all of you who have asked friends and family to donate in honor of our Ally. We have raised $5500 so far!! Check out our Light the Night Site if you get a chance. I check it all day long!

http://pages.lightthenight.org/soh/Dayton09/AllysArmy

It is amazing. And I know we still have more ideas on the plate...tons of people with tons of good ideas all contributing to our cause. We are making a difference, not just for my small family, but overall. I saw this quote today in a book that my friend Nicki made for me when my Mom first left for her surgery at the Cleveland Clinic....it so applies to our army:

"alone we can do so little, together we can do so much" -Helen Keller.

Monday, August 17, 2009

Monday, Monday

It has been a rather quiet day around here today. We did manage to get out to Target and buy both of the kids school supplies. That was Ally's first trip to Target since mid May! It was a treat. While we were there, we had three people come up to us and tell us they knew who we were, even though we didn't know who they were. I guess it is pretty easy to tell by looking at Ally, plus she had a big bandage on her port that was partially exposed. We don't live in that small of a town (40,000 people actually) but it is amazing how everybody is a friend of a friend and so many know Ally's story.

The nurse came out and gave the fourth of four chemo treatments and then took the catheter out of her port. This meant one thing to Ally: she could go swimming! She had been wanting to all weekend, but couldn't because she was accessed. We waved goodbye to the nurse and started to eat lunch when CRASH the lightning and thunder started. We still managed to go up for a little bit later on, and swam amongst the rain drops. The good thing was...no one was at the pool! This makes Ally much more comfortable about getting in. This is really only the second time all summer that she actually put her googles on and went underwater. Thankfully Mrs Booher and Mrs Winger stayed up there with her (and Evan) and let them go ahead and swim while I took Miss Carly home for her nap. This is great because our swimming days are numbered. One more week until school starts. And Evan, Carly, and I are travelling to Erie Pennsylvania on Thursday to see my grandparents and aunts/uncles. My sister, her oldest boy, and my Dad are also going with us. I am a bit worried about doing it without Jerad (2 nights in a hotel + a five hour car ride), but my whole idea of what is hard and what is not has changed. Leukemia can do that to you. The things that used to be so stressful, so hard, so much planning, etc....not so much anymore. Hopefully I will get to update you while I am there, but it may be a good time for another guest post by Jerad.

So just keep thinking positive thoughts about our Ally. And pray that she starts school and fits right in just like any other second grader. We do have a stressful time coming up with the start of school, but God has led us out of those darkest hours and I think we might actually be ready.

August 16th Double Birthdays

Today was my son's birthday. Happy Birthday Evan. He turned five years old and for some reason I can remember him being born more so than the other two. Probably because he was supposed to be a scheduled C-Section, but then he decided to come in the middle of the night two weeks early. And thus he was the only child I had that was not surgically removed. He kept us on our toes that night, and every day since. His greatest trait (I think) is his perceptiveness and his warm heart. He always knows what is going on and picks up on people's emotions very easily. Maybe that will make him grow into a sensitive man, I don't know, but I hope so. He is also the class clown, just like his Daddy. His happiest moments are when he makes someone laugh. I also believe he will always be a leader, just like his Pa. For now, he prefers to be a Mama's boy and he really does hold a special little place in my heart. Ally is a Daddy's girl, so I will leave Evan as mine. All mine.

Today was my Dad's birthday. Happy Birthday Dad. Funny how that works. My Dad has not celebrated his birthday in 20 years. He stopped on his 40th, and today he turned 60. He had a string of bad luck things happen on his birthday. So he decided not to acknowledge it. Five years ago I was hoping he would change his mind when his first grandson was unexpectedly born on his birthday. I thought it was maybe God's way of nudging him. But he held out, still no birthdays. But just this year he decided to celebrate. I think he is turning over a new leaf, starting fresh, as he should. My Dad and I have been through so much together in the past two years. We grew much closer. We are partners in life...we help each other. We helped my Mom, day in and day out, together. He also sat right by my side as the doctors told us our daughter has Leukemia. He helps me in immeasurable ways and I listen proudly whenever he speaks in public at one of his many philanthropic functions. He leads a lot of people and helps a lot of people. But his kids and his grandkids are first in line. So today I gave him 20 years worth of Happy Birthday wishes. I had been waiting a long time.

To complicate all matters, Ally had a blood transfusion today. Of course, it ended up taking FOREVER and put a bit of a damper on the celebrating. 7 hours in the hospital, but we got done in time to go have dinner at the pool with the two birthday boys. Ally gave her Pa some special treatment tonight. Have you ever seen a big 6 ft 4 inch man getting a pedicure? Well, you saw it here first. Pa has some really great toenails courtesy of one Ally Barnett. She has to find something to keep her busy when everyone else is swimming and her port is accessed and she can't get in!


And last but not least, just short of 1am here, I have completed another 2 minute slideshow of the birthday weekend for our out of town family (and anyone else who would like a glimpse)

video

Thanks for following us on our journey.

Sunday, August 16, 2009

Update

Just a quick update, I will post pictures from Evan's party later. I know there are some family members out there that will appreciate the pictures.

Our Friday at home has now been replaced by a Sunday at the hospital. It never quite works out. Ally's blood draw from Friday proved that her hemoglobin was too low (7.7) and so the home health nurse paged the doctor. He didn't want to wait until Monday when the clinic reopens, as that number is the lowest I have seen. He said we were okay as far as symptoms go until it drops below 7 (but it is pretty close). So Ally will be spending her Sunday on the fourth floor of Children's getting a blood tranfusion. The chemo regimen that she is on now is causing the low blood counts. Her ANC continues to be good (840) which means that she is allowed to continue going to public places this week. I guess we will be able to get those school supplies.

Normally I would not mind this too much, but I am sad because today is Evan's birthday and I wanted us to be able to do something fun together as a family. Instead I am planning on taking E and C to church with me, as it is also my Dad's birthday today and I think he wanted us all at church together. Then the three of us will travel down to the hospital to visit Ally for a bit. We have to keep marching forward in our battle against this leukemia....it does not know or care whether there is a birthday or not. Evan had a great birthday party last night though...and you will see it in the pictures. As he was going to bed last night Evan said that it was the best day of his life. And I think he was right.

Friday, August 14, 2009

Friday at Home

Today the nurses came to us!! Turns out they were a bit late, but that's okay when you are waiting in the confines of your own house. The appointment ended up being a bit more traumatic than I wanted it to be. When the nurse stuck the needle into Ally's skin, she ended up not being in the actual port. So then she had to sort of dig around to find it....no luck. It hurt poor Ally and she was crying the whole time. So then she had to start all over, new kit, everything newly sterlized, and she poked her again. This time it went, but Miss A was not very happy. The chemo was administered successfully and she continues to have a fair amount of energy. She spent part of her afternoon playing with her friend Emma from school, which she loved. She spent the second half of her afternoon playing school with her brother and sister. We are getting ready for the big day --August 25th. She also went out with her Grandma and Grandpa tonight. They were taking Evan to the toy store to pick out a present for his 5th birthday.

I know quite a few of you have asked me about donating blood in Ally's name. Some of you even just donate blood anyway to be a good citizen. Well the Light the Night organization has teamed up with the Community Blood Bank and they are running a promotion. The blood bank will donate money on our behalf to the LLS. Here are the rules:

Blood Drive Incentive
  • Friday August 28th & Saturday the 29th at Community Blood Center (349 South Main Street downtown Dayton)
  • Each registered team member who donates during those two days will receive a $25.00 credit to Ally's Army! You have to mention that you are on her team to get the credit.
  • Reservations STRONGLY recommended either call 800-388-give (4483) to make an appointment or log onto www.donortime.com Space is limited.
  • You can also register to win a Honda Civic as part of CBC’s promotion “Do Your Civic Duty”
  • Hours are 7am-4pm Friday and 7am-12pm Saturday

Our fundraising has topped $3000 in less than week. Thanks to everyone out there who is making it happen. Ally's Army is making a difference.

Thursday, August 13, 2009

Livestrong

First of all, wow we had a lot of comments yesterday. Thanks for the encouraging words. I do know that the people looking at us are empathetic, caring, sympathizing, etc. I know there is no harm done. I do. I would just rather not be the center of attention so much. I think Jerad said something like he doesn't want people to look at us with pity...not so much for our sake, but mainly because he doesn't want our daughter to be sick. And there are just always these constant reminders that she is.

I just went in to kiss Ally goodnight and caught her reading. This makes me so happy. For the longest time I would try to get her to read. And I always gave up. Holding the book up was too much for her there for a while, much less processing the words. I love all of these normal things that I always took for granted in my past life.
Then I looked up over her and next to her bed and I saw this:

We have this little wire running across her wall and we change the cards out for the seasons/holidays, etc. We actually only change it a few times a year. But today it says LIVESTRONG. It's just not something you see in a seven year old's bedroom. I asked her how it got there and she said Daddy did it.

Tomorrow the nurse comes at 10am. They do have to access her port so we will put the Emla (numbing) cream on at 9am. I am hoping it goes smoothly with little tears. This will be the start of four days of chemo...Friday, Sat, Sun, and Monday. Her brother is having his birthday party at the pool this weekend, so hoping she will find some other things to do to keep her occupied since she can't get wet.

Please say a prayer that tomorrow's chemo will kill any remaining leukemia cells. Only about 3 weeks until it is tested.
LIVESTRONG Ally girl. LIVESTRONG.

Wednesday, August 12, 2009

Staring

Okay, so I don't want to make anyone sad or anything, but I know that I do. So sorry. Just apologizing up front because I am feeling sad today. Life is not a bowl of cherries...sometimes its the pits (I just got a card that said that...hah!) We are continuing our climb up the mountain of normalcy. Ally is doing so good. SO GOOD. Even better than she was last week. She is being goofy and doing silly dances and all the things I remember about my old Ally. My old Ally and wow I can hardly even remember it, but at times she comes back out. Everyone around her is noticing it. And if you think about, and think about that first month where she couldn't lift her head off the table, she was battling two things. First, she was still battling the leukemia cells in her body, and secondly she was also battling the effects of the chemotherapy. A double dose of HELL (no better word for it). So now, in my opinion, the leukemia cells are gone and she is really just fighting the side effects. And that has to help matters some.

Today, in our efforts to climb the normalcy mountain, I piled all three kids in the car and we did something very simple. We went to lunch. We went to Marion's Pizza, where I knew I could get a significant amount of calories into my little girl's body. I even let them get a COKE! (a rare treat) We played in the game room and Ally even won a stuffed animal from the claw machine for her little sister. In her former days, Ally was the QUEEN of the claw machine. She is the master. Then we got back into the car and drove all the way to Centerville to a toy store that has these things the kids are collecting: we call them squishies. I think they are actually called zoo mania or something like that. They are only 25 or 50 cents, but the kids all collect them and trade them, etc. Ally even spent some of her money from the hair fairy on a new art kit. A continuation of normalcy hit when the kids played outside for two hours with our neighbors the Holsteins and the Finns. Usually it is too hot, too cold, too windy, etc for Ally. But today...not a word. She just wanted to hang out with her friends. Just like old times. You can get the picture on how good she is doing.

Tea Party in the Tent
My heart is so happy when she is like this. I actually heard her humming yesterday...just walking around the house happily humming a little tune. Little things like that can make me weep tears of joy. She has absolutely no idea that this disease is life-threatening. She has no idea that it is one of the rarest things that can happen to a child. The innocence of kids is probably a great thing to deal with something like cancer. In simple terms, she just thinks this is the way life is. Well, sort of. She doesn't feel sorry for herself. She is not self-conscious of being thin or bald. She doesn't worry about things she will miss. Maybe this is also because she has the ultimate laid back personality, always has. She can handle this. Of course, she doesn't want to be poked by a needle or to be throwing up in the middle of the night, but for the most part she takes it all in stride.
Sometimes, though, no matter how good things seem to be...I still get hit with that punch-me-in -the-stomach feeling of sadness. Last night I was showing Jerad the blog entry made by Erin Cobb and there is Ally's beautiful picture. And every time I pull up our Light the Night page, well there is her picture again. My beautiful smiling girl who knew nothing about any of this. It just makes us so sad to look at old pictures of her. It is really a tough pill to swallow. It upsets everybody, I know. My Dad told me the same thing tonight. On a daily basis I really don't even notice the baldness..the skinniness actually bothers me more. Except when I look back....

And this brings me to my final thought for today. Over the last ten days, we have emerged from our bubble. The zoo, the toy store, Build-A-Bear, the ice cream store....and everywhere we go I see people staring at us. She always wears a hat, but they still see it. They can't help it, I know. It's like a car accident...you have to look. A sick child..people wonder. To us, it is so normal, even to her friends/our neighbors they don't even see it anymore. But in public, we can draw stares like you wouldn't believe. Sometimes I even think...oh wait, do we know them, are they looking at us because they know us?? And then I realize that is not the case. The other day at the zoo I looked over and Ally had taken her hat off. She was hot and needed a breather. I glanced around and everyone around us was looking. I quickly told her to put the hat back on. She said "Why?" And for a minute I couldn't answer her. What was I supposed to say...well, honey, because society would prefer if you have hair. I muttered something about making people uncomfortable and then she put it back on. So this is another thing I have weighing on my mind lately for when school starts. I hope those Valley kids just take a good look, because I know they have to, and then they realize that its just Ally. And hair doesn't really matter.

Tuesday, August 11, 2009

Fundraising Friends

59 people! I am so excited. More and more people are signing up everyday. I know there are more out there too. Some might even be my family members that have not yet signed up. (ahem, ahem) But really I am so excited. I see Ally's teachers, her principal, some people from her doctors office, her aunts and uncles, former co-workers, current co-workers, old high school friends, college friends, parents of friends, neighbors, family...and I don't believe it, but even some people that I do not know! Wow. And thank you so much for everything you are doing. I am hearing many different ideas for fundraisers...even down to kids doing some of them. If you work for a larger company (like my friend Shannon that works for the Gap), you may find that they will even match whatever funds you raise/contribute. And that is just awesome too.

I have to say that I was extremely touched today by one of the Army who posted a fundraiser to her blog page. She is a very popular photographer from Alabama who gets many many hits on her webpage. I sat at my computer with tears streaming down my face as I was reading what she is doing for us. Investing her own time and using her own field of expertise and charging people for her advice. Keep in mind that I have met Erin Cobb one time. She is a wonderful person (obviously) with a huge heart. Check out what she is doing here:

http://erincobb.com/ThePigBear/

Another friend of mine, Amanda "Queen Bee", lives all the way in Arizona. Believe it or not, I met her strictly via the blog. She owns her own personalized jewelry business and she made my All 4 Ally necklace that I posted on the blog earlier. She has offered to donate $10 to our Light the Night walk for every item she makes as long as you mention Ally's name. She has great items out there (scroll down her blog to see them all). Good gifts for Moms, Grandmas, Best Friends, Teachers, etc. Here is her site, and I am going to try to put a button on the blog too (testing my technical expertise)

http://www.queenbeedesignsbyamanda.blogspot.com/

Ally is continuing to do well. She played lots of games today and watched very little TV which makes me happy. We went to get ice cream tonight and I even caught her swinging on the playground with her friend Joshua. My next goal is to get her on her bike or something similar. Baby steps......

Sorry for the shorter post. I just arrived home from the grocery store at 10:45 PM, had to put groceries away, then had to also load the dinner dishes into the dishwasher, step over the 100 toys laying around my house, change the laundry, and well....have time for blogging!! There is too few hours in the day but too many people are checking in on us to let the army down. Thank you!

Monday, August 10, 2009

Light the Night is rolling....

In a little under 24 hours we now have 40 people that have signed up to do the Light the Night Walk on October 1 . What an awesome start. I know there are more walkers out there that have not yet signed up, so our number will grow. By signing up you actually help me logistically so that they can plan for our number of balloons needed, etc. For large groups, they like to pre-register everyone and make it easier on the night of the walk. I already warned them that I thought we could have a hundred people show up for our little girl.

Again, here is the spot to sign up: http://pages.lightthenight.org/soh/Dayton09/AllysArmy

Also, it is pretty easy to do the online fundraising too. I saw a few people did it today...they just emailed it out to family, etc. There is also a little Light the Night button that you can put on your facebook page or your blog or your company's website that links in to our donation webpage. Thank you so much to our friends the Whitmers. They made a donation of $500 and then evenly allocated that out to each person that was signed up to walk at that time. So a bunch of you will see $13.15 on your personal fundraising page which was donated by the Whitmers but spread amongst all the walkers. A good start for everyone! Thank you so much for that generous donation. The Whitmers are friends of my parents (and me) and also lost their teenage son to cancer just a little over a year ago. I watched them through their suffering and never understood how they had such strength to go through it. Now I understand...although just a little.

Ally had her last dose of the ARA-C this morning at home. (via a home health nurse) She had four doses in four days. As far as side effects, she seems to be a little more lethargic, but not terrible. She pulled her bandage off herself (she always does) and then the nurse removed the catheter from her port. This usually results in about 20 minutes of crying, but today she pulled it off and had very little tears. Last month when she got ARA-C she ended up with a cough. I don't know if it is coincidence or not, but she has started with a cough again! So hopefully that doesn't last for us. The schedule for this week is a little unique...we actually don't have go to the hospital on Friday. YAAAAAAAAY. She does have to get re-accessed and start another four day course of ARA-C but they are doing it all via Children's Home Health. So we can stay home this week. Everyone is happier about that.

And by the way, Ally is eating a little better than before now too. Not great, but at least a little something at every mealtime. The poor little girl needs a whole new wardrobe as all her clothes are too big for her now. She is down 12 pounds.

Thanks for the continued support and prayers. We need them.

Sunday, August 9, 2009

Light the Night Webpage

Ally and family had a pretty good weekend. Overall, she still seems to be feeling good. We have come so far in the process. At the clinic on Friday, one of the nurses told us that she should have some new families come talk to us. So that they can see that it DOES get better. We really struggled for about the first 6 weeks, but it is starting to become our new normal. It did get better, like they said it would. I completely struggle with thoughts of it getting worse again. I pray and pray that it won't. They are testing her MRD again around September 1st. I have never been more scared of anything in my whole life. One of the doctors told us if it comes back high, we are looking at a bone marrow transplant. And those are very risky and I don't want to do it. So, my coping mechanism is just to block that thought out. I try not to worry about it until I have to. I have learned that tactic over the last year and a half. I was a major worrier before, and now I am not. If I still behaved like I used to, I would not be capable of running this family. I would probably be locked up somewhere. So I just can't do it, I won't. That's not to say that I am not scared or I don't think about it and I am most definitely saying 101 prayers a day about it. I just can't let it bring me down.

We did a few "normal" family things this weeked. Ally's ANC was pretty high (880) which means she can be more exposed to the public, etc. She had been wanting to go to Build a Bear to use a gift card that she got from Jerad's cousin Jill (thank you so much) so we did that. She absolutely loves that place and it brought huge smiles to her face (and Evan) and it always warms my heart a little bit. I don't want her to grow up. I want her to love her stuffed animals and all the little clothes for them. We also drove about 30 minutes to Centerville to go to our friends the Sidwells new home. It is really weird, but I haven't been to Centerville since mid May. This is a place I would normally go to once a week. I just haven't left the confines of more than a 10-15 minute drive except for the zoo. I am finally feeling comfortable enough to be a little farther from home. It is just so weird how my life has changed. I remember feeling dread if my child were sick for a week. A week used to be so long! Then I remember thinking that Ally had mono, and I was worried she would be stuck in the house for a month. A month! What I would give now to have a sick child for only a month. Now I have two more years staring me down. And that is only if things go as planned. It is a bit exhausting to think about.

I have to say a special thank you to my new friends at Grace Crossing. They arranged to bring us meals everyday last week. Everyday I got the pleasure of meeting a new person and having a meal made for our family. We are really getting back into the groove a little bit, I feel like I could make dinner for sure, but people are wanting to help us so I let them. And getting to the grocery still seems very hard. So thank you. Thank you. A hundred times, thank you.

Finally: NEWS FLASH. I think I have finally got our webpage set up for the Light the Night Walk. The link is below. This is the spot where you will sign up if you are planning on walking with us on the night of October 1. Click on the yellow button that says "Join our Team Now" That way I will know who all is walking with us. This is also how you can submit your fundraising dollars and make sure they are credited to Ally's Army. You can see that we have actually already raised some money, and I have more here to send in. If you do something to try to raise money (and I have talked to lots of people who are doing there own things for her...parties, sales, working for her, etc) you can just submit your donations out here. It will all be reflected on the page and we can see how close we are to our goal as a team. I think if you raise $100 you earn a t-shirt, if you raise $250 by the end of August you get a gas card, etc.

You can also just donate to our team. A flat donation by hitting the red button. You can email it out to friends/family and get donations credited to your name that way too.

http://pages.lightthenight.org/soh/Dayton09/AllysArmy

Even if you have no donations at all, I want as many people as possible to walk on October 1. I don't care! I just want people there to support our little girl. She has no idea the masses of people that are praying for her. I can tell her...but when she sees it with her own eyes...that will make a difference.

Thanks for all those who are walking. Thanks to everyone who faithfully reads about our journey. Thanks to all those who are praying. We are blessed to have an army behind us.