Tuesday, September 27, 2011

Together again

Again I am delayed in writing. We had had a bit of a whirlwind month. The same day that Ally took her last chemo, I found out they had moved my Grandpa Jerry into hospice. This seems to follow my typical luck with things. He didn't last very long, which is probably a good thing, and passed away on September 22. I just got back from a trip back to Pennsylvania for his services.

Grandpa was a great man. One of those people that pretty much got along with everybody. He was an Irish Catholic and was always cracking a joke and was the "life of the party." In many ways, even by calling him Jerry, he reminds me of Jerad. He served in World War II and fought in the Battle of the Bulge. I am so proud of him for that and he earned not one, but two purple hearts. At his gravesite he was given full military honors including a six gun salute and the bugle playing Taps. I was doing alright until that song was played. That's a sad one.
I got through my third Eulogy in three years. 2009 I did it for my Mom. 2010 for my Grandma. 2011 for my Grandpa. I certainly hope I am done doing this task for a while.

Since this was my Mom's Dad, it brings back the pain all over again for me. Now, the whole side of that family is gone for me (except my Aunt who I remain close to.) Some of Mom's ashes even went with Grandpa, which was his wish. I can't help but smile a little bit thinking about him going through the gates into Heaven and seeing all his old friends...his golfing buddies, his hunting buddies....he was the last one standing at age 94! And of course seeing my Grandma again after losing her 10 months ago. And Mom. Oh how I wish I could go...just for a day and come right back.

So I found out I even have some blog readers in Pittsburgh...funny how people who have never met me can recognize me just from the blog and my pictures. Thank you all. And yes, I am going to keep doing this. There are many milestones in life to document and no reason to stop now.

Ally has turned the corner with her belly pain. Last Tuesday, when she went to the hospital for her antibiotic (no chemo!) they ran all sorts of tests again...xrays..etc. Nothing could be found. The doctor explained that he thought it was "functional stomach pain" Which he told us was a very real pain, not in her head, but caused by stress and transition. He said it happens all the time and there is not much you can do for it except try to keep her as busy as possible! He said a lot of the kids (and parents actually) go through post-traumatic stress disorder when the chemo is over. God help us with that. But just in the last few days she has stopped complaining of belly pain as the medication is leaving her system. Thank you God for that too.

I finished my Dayton Children's blog and they posted it up on their site. It was even featured on their home page which made me proud. You can finish reading what I originally posted here. I added a bit on her end of chemo party at the hospital and included what may be some of my favorite pictures EVER...her getting sprayed by blizzard spray with Dr B in the path too.

Check it out here:

Monday, September 19, 2011

843 days

Note: I am really not neglecting my blog or my Army. I have been asked by Dayton Children's to be a "guest blogger" for September Childhood Cancer Awareness Month. So for now, I have been spending my time working on the "other blog". I do have to say that we had an incredible weekend. I have many pictures that I want to share with you about our incredible day. Truly one of the best days of my life. Tomorrow we are headed back to the hospital for Ally to receive her monthly antibiotic infusion through her port (and hopefully to get some answers or a plan to deal with her chronic stomach pain) I believe the nurses will sign her "No more chemo" song and I wanted to include that at the end of this story. So here is a brief (or not so brief) version of our entire story in rough draft form. Feel free to send me comments on what I should change!

843 days. 843 days ago we heard the words no parent should ever have to hear: your daughter has leukemia. We learned only about 2000 kids in the whole country are diagnosed with this every year. The odds could be likened to winning the lottery. However we had just won the “reverse lottery” or so we called it. Our seven year old daughter Ally had just been diagnosed with ALL leukemia – high risk. Our lives became encompassed with medical protocols, research studies, chemotherapy drugs and binders listing side effects. Our doctors, nurses, and fellow patients became our family and Dayton Children’s became our home away from home. We spent countless days and nights, I believe somewhere around sixty days of the first year, in our home away from home. We came to know everyone there that surrounded us including aides, parking attendants, cooks and custodians.
Ally’s first year was incredibly hard. She suffered from all of the various side effects of her chemotherapy regimen. She got fevers. She got mouth sores so bad she would go on a morphine pump for a week at a time. She couldn’t even talk to us because it hurt so badly. She got pancreatitis. She was in a wheelchair at times because her joints hurt so bad she couldn’t walk. We dealt with vomiting, constipation, and lack of sleep for most of the year. We were forced to be inside our house, not allowed to go to restaurants, shops, parties, etc. due to her immune-compromised position. We relied on friends and family to help us with our other two kids… our son Evan, now 7 and our baby girl Carly, who is now 4.
The fact of the matter is that we made it through. Within a week of her diagnosis, we had formed an Army. Ally’s Army. This Army carried us through our darkest days…running our errands, making food, and taking care of our kids. About 4 months after her diagnosis, we had 400 member s of her army walking behind her at the Leukemia and Lymphoma Light the Night Walk. We had monumental success raising money in her name. Most importantly, we had the Army there with us…saying prayers for our girl every time we hit a bump in the road. I faithfully kept a blog for my daughter and for the Army. In those 843 days, I posted over 400 blog entries. I posted pretty much daily the entire first year. I wanted to raise awareness as to what childhood cancer was all about. I wanted people to know the good but also the bad. I wanted to lay it all out there in hopes that someday it would help another family going through a similar ordeal. There are so many emotions that a mother feels when her child is battling a life-threatening disease. We were in the trenches everyday fighting for our girl and encouraging our girl to fight through it all.
September 17, 2011 was the 843rd day. It was the last day that Ally, now almost 10, would have chemotherapy in her body. My little first grader at diagnosis, was now walking tall as a fourth grader at Valley Elementary in Beavercreek. She now has a year’s worth of curly red hair covering her head that I had rubbed so many times while she laid in her hospital bed. Coincidentally, it was the same day as the first ever Curesearch Walk for Childhood Cancer here in Dayton. All of her friends with cancer, all of their nurses, and all of our Army would come together on this day to walk to try to put an end to this disease for all. It couldn’t have been a more beautiful September day. It was perfectly sunny, not too hot and not too cold. As I walked up to the registration table, I couldn’t help but feel a giant lump in my throat. The lump held all my fears, my frustrations, my sadness, but also my joy and my pride that we had made it through. I looked out over the crowd and saw the kids that had been in the rooms next door to us while we stayed in the hospital. I saw the sea of orange Ally’s Army shirts. I could barely speak to anyone. My tears were coming off and on. I watched my daughter do the walk (2.4 miles) which is still quite a bit for her. And she is now one of the “healthy” ones. She had her scooter to help. But I couldn’t help but notice other kids stopping to vomit, sitting on the side, or even missing the walk altogether because of being in the ER with a fever. I will never forget. The walk was an incredible success and more importantly raised awareness that cancer does indeed affect children. September is Childhood Cancer Awareness Month.

But that day, the best was yet to come. My husband and I had planned a surprise party for Ally. We invited literally almost everyone we know to come celebrate the day that Ally would take her last chemo. She had absolutely no idea! We had the party in our backyard. One of the most amazing sights I have seen throughout my days fighting this was when Ally walked up to the yard. There were about 100 people from her Army lining the walkway and forming a tunnel with their hands in the air. The tunnel ran all the way into the backyard. She ran through it, wearing her medal from the walk, while everyone cheered for her. These people had been her cheerleaders all along. Cheering from behind their computers while reading her story…praying on her darkest days, but now exclaiming the joy that the treatment would be over. It gives me chills just to think about it. She played for the next 10 hours in the backyard on the giant inflatable toys we had rented for her . There were bunches of her friends there…laughing, singing, sliding, jumping, eating, and enjoying the perfectly sunny September day that we had been waiting for for so long. She took her last chemo dose right in the middle of the party.
843 days. The last day was truly one of the best days of my life. This chapter is closed. And a new chapter begins.

Thursday, September 15, 2011

Thanks to all who signed up for the walk! Our team has gotten bigger about every five minutes today. I wanted to post a map. The walk will be at Eastwood Park 1385 Harshman Road http://www.kintera.org/atf/cf/%7b353AD59A-D2B8-4761-B26D-F2735F50C5F9%7d/DAYTON%20CURESEARCH%20WALK%20-%20SITE%20MAP.PDF

• Registration and check-in will begin at 8:30 AM. I think most of you are registered online so probably not necessary to be there that early.
• The Opening Ceremony will begin at 9:30 AM.
• The CureSearch Walk follows the Opening Ceremony.
• The Closing Ceremony will follow the CureSearch Walk. Be sure to join us while they announce the fundraising total for the Dayton CureSearch Walk and the top 5 fundraising teams.

I believe they will give me vouchers for all of you that raised more than $100 to get your t-shirt! As of right now, Ally's Army is narrowly in 1st Place. We have raised $5500! We are only in first place by about $50 so I don't expect we will stay there.

Any of those still inclined to contribute, you can do so here.

And thank you to all of those who are coming to the party! I still think she has absolutely no idea! Jerad and I are staying up until all hours getting things ready and trying to keep our minds clear. It will be a very emotional time for us, so I apologize in advance for my tears!

Sunday, September 11, 2011

Shhhhhhhhh. It's a surprise.....

The countdown is on....we are now within a week. For about the last six days she has been really suffering with belly pain for whoknowswhy reason. I keep telling her...just stay strong. Just a few more days. And her ankles are really bothering her too...so much she burst into tears when we even discussed going on a family bike ride. No more chemo is soooo close now.

Jerad and I have (last minute) decided that we would like to SURPRISE Ally with a party at our house after the walk on Saturday. This is such a big deal for her and we and would like to celebrate with everyone. We will give her the last dose of chemo at the party and who knows what else! We can all sit back and relish in the day that we have been waiting for for such a long time.

The plan is this. Evan has a soccer game directly after the walk. Jerad is the coach of that game. He will just have the girls go with him (which they always do anyway so it won't be weird). When they arrive at our house after the game (about 1:30) we want as many people here as possible to SURPRISE her.

If you can make it to the walk but not the party, that's fine.

If you can make it to the party but not the walk, that's fine too!

Please, please, please, no gifts.

We will run it "open house" style. We will be here all afternoon so feel free to just drop in whenever.

I can ask nothing more of Ally's Army than the opportunity to thank you.

And if you are coming in from out of town for the walk, feel free to just come over right after the walk. I can just put you to work blowing up balloons or some such thing! ;)

And remember. It is a SURPRISE! Please don't mention to your kids if they are going to be around Ally! And don't breathe a word to our survivor girl!

Tuesday, September 6, 2011

Last Steroid

Not the greatest picture, but I took this one of Ally right as she was taking her last steroid. The last time she will swallow these three little pills called prednisone. (well at least for this part of her life!)

Of all the drugs she has taken, this one takes the cake for the drug I hate the most. All the horrible side effects...over and over and over again. It steals her ability to sleep (and have sleep-overs!). It steals my silly little girl and makes her go into a bit of haze for a week out of every month. It makes her crave weird foods and makes my kitchen open for business non-stop 24 hours a day. It makes her head hurt. It makes her belly hurt. It makes her cheeks look like a chipmunk.


Jerad was walking the pill container over and getting ready to throw it in the trash can. I said "WAIT!!! I want to run over it with my car" Really. I do. The love-hate relationship that I have with a silly material item like a drug. It saved my daughter. I will never forget Dr B telling me that he could put half his kids into remission just with the steroid. It did save her. Thus you can see the love hate.....

And we now have 12 more days of waking her up at night to give her the chemo. After that....she will get to sleep. The whole night. Without disturbance. 12 more days.

All of these things seems little. But they all add up. I just finished telling her teacher and some of the administrators at her school: I am hoping for a very normal school year. I just want her to be a typical 4th grader. But I know....I know normal will never exist exactly like it used to. But I would like to give it a shot!

That also means there are 12 days left before the first annual Curesearch Walk for Childhood Cancer. We will spend the last day of chemo walking for her and all of the other little ones battling a disease that is bigger than all of them. Thanks to all who have signed up. Here are the details:

Registration at 8:30 (hopefully all of you will preregister at link below!)

Walk and opening ceremony at 9:30

Eastwood Park

1385 Harshman Road

Dayton OH 45431

And I am now begging...begging...if you haven't signed up yet, and plan to walk, please do so here. It is not too late! (A lot of people told me they were walking, but are not showing up on our list)

Thank you all, as always, for getting us this far and getting us through this last little bit.

Ally's Army will continue to do good things.

My mind can't quite get around it all yet. I am still pretending it is very far off in the distance.

It is:

Huge. Amazing. Monumental. Scary.