Friday, December 24, 2010

Christmas Eve

This morning at 6am Ally woke not feeling very well. It was pretty early and her stomach was bothering her. Tears. Later in the morning, after going up to my Dad's for pancakes (which she did not eat) her head started hurting. More tears. This was all followed by me. Panicking. Calling to find out the hours of the blood lab because I do think her counts are going too low. My head started hurting in misery. Visions of Christmas of 2009 were swimming in my head. Why, oh why, could I not just have a worry-free holiday? After taking her temperature multiple times, we gave her some ibuprofen. And it worked. She started perking up midday. And started eating. And showing signs of all her excitement about Christmas. I have never seen her so excited about it really. Maybe two years worth of excitement have brewed up within her.

So Jerad and I started to breathe a little easier. We had a most awesome time up at my Dad's house tonight with all of our family surrounding us. Evan winning the game of pass the pickle and Jerad getting his cool gift of a remote control helicopter. And Evan saying so cutely: Wow, everyone really loves Ally's hair. We got to go to church. All 5 of us together. Me, barely able to eek out a Merry Christmas to our pastor without a lump in my throat and choking back tears for what God has given to us this year. The greatest gift of all which is the restoration of health to our daughter. The gratitude is overfloweth on this day.

Yesterday, some of us cancer Moms took down Christmas dinner to the hospital. We fed the whole Hem/Onc wing and had enough left over to feed the ICU families. I walked down the long corridor, with my offering of food, saying silent prayers as I passed each room and peeked inside to see a little one in a hospital bed at Christmas. I remember it all well. I remember the decorations. I remember being in the room last year and watching other people come. The same little boy that we celebrated Christmas with last year...he was still in there. I remember driving a Christmas tree down to the hospital at 11 pm on Christmas Eve...barely able to see the road through my tears. While my friend Suzanne came and set out my gifts and put things together and even did my dishes. It is a Christmas I will never forget.

But this year, my little ones are upstairs snug in their beds. And Dad is putting together some toys. And cookies are on my mantel. And all is good for now. And Santa has some work to do, so I should really get off my computer. I just wanted to remember this feeling right now. But it is really almost unexplainable, so I will leave it at that.

Merry Christmas to all. And to all a good night......

Monday, December 20, 2010

Believe xmas

My Christmas Card for this year. I am posting it online again for all those that I may have neglected. The picture???? eh, so so, I definitely have better....but the message is so very clear. I had to use this picture as the Wish was the highlight of our year. Hope everyone is enjoying the week before Christmas!

Elegant Cross Religious Christmas Card
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Saturday, December 18, 2010

Spinal is Done (for three more months)

I have some excellent news that is worthy of all Christmas wishes combined. Ally's spinal fluid was free and clear of any leukemic cells. Praise to God yet again.

She had a super long day at the hospital 8:30am until 7:30 pm because someone forgot to put the orders in right. Wow that is frustrating enough in itself! She did fairly good with the spinal. She went almost to sleep she was sort of sleeping with her eyes open until he poked her with the big needle and she screamed. Wow I hate that part. She went back into her sleep trance while he drained out three test tubes of fluid (one for hematology lab, one for chemistry, and one extra in case he was suspicious and had to do a flow cytometery on it). Then he put in a double dose of chemo (she gets more now that she is nine...and this is the first spinal since she turned 9!). She didn't yell again until he pulled the big needle back out. It all seems pretty quick, like 15 minutes, and you would think I would be used to it by now, but it is still tough on us. I think the main reason for that is just the fear (FEAR) of recurrence. She doesn't get the heavy hitter chemo like she used to and they only check her fluid every three months. It can just weigh heavily on our hearts leading up to it even though we try to turn it all over to God. So that gives me that much more reason to celebrate when Dr B told us the good news.

Her liver numbers were a bit elevated which was concerning, but Dr B thinks it is just from all the medication she takes. (the daily chemo) Her ANC had dropped all the way down to 990....it was 1350 just a few days before so that scares me that it is falling too quick. But he kept her meds the same. I just do no want that perfect storm to be set up like we had last Christmas when she was in the hospital with a low ANC.

Today was supposed to be our family Christmas with Jerad's family. Today was also supposed to be Carly's dance recital. They were dancing to Rudolph! However, my baby girl came down with a fever about an hour before we had to leave. And that is really just how my luck works! So last year I stayed home from Christmas with Ally....and this year I stay home with Carly. And I am just sad she is missing her dance, but also happy that Ally is getting to go to Christmas and we were blessed with the good results.

I can handle a fever when it is with the child that doesn't require a mandatory trip to the ER. We will just cuddle a little more and watch some Frosty. But I do hope it does not spread to my older girl. I would like to remain far far away from that ER, especially at Christmas. So say a little prayer for Miss Ally if you would!

Thursday, December 16, 2010

Special Wish

Ally and Selena made the cover of the Special Wish Newsletter. I hope you can read it...you might have to double click it to make it better.

For those of you that ask me about my Dad (lots of people) he had his procedure done and he is really doing much better. It was like instant relief for him after they shocked his heart. He actually felt so good he went to Florida for a week, but will now be returning to all of our snow. We had two snow days this week (much to Ally's dismay today because now she is missing all the fun holiday stuff at school)

Please say extra prayers as she has her spinal tap on Friday morning at the hospital, followed by a days worth of chemo and other infusions. We used to do spinal taps almost once a week for a period of time. Now we are every three months. I know one thing...they never get any easier and they are never fun to watch your child going through them. It is stressful, but we can handle it all as long as the results are good. I will try to update on here as soon as we have her spinal fluid results.

Sunday, December 12, 2010

Funny Stuff

So we tried to get a family Christmas picture. All posey posey, which typically is not my style. I even got my manual out for my camera...and learned how to do the self timer. Got the tripod out. We were all prettied up from going to breakfast with Santa (more on that later). and we aren't all prettied up very often. Maybe just once a year actually. But the humor of trying to get the picture with 3 year old Carly really got to me. Frustrating while it was happening, but funny now.

SHOT #1 Oops, Jerad was too late getting in there.
SHOT #2 OH, Carly found an ornament......look
SHOT #3 And, she has now dropped the ornament
SHOT #4 DOH! she dropped it.
SHOT #5 She decides to close her eyes....lovely smile though
SHOT #6 Where in the heck did Carly go?!?
SHOT #7 This will have to be our winner because everyone was DONE.
I just had to share that because Carly is a funny girl. Although most of the time I am closer to crying than laughing with HER!
Also, we had Ally's bloodwork done on Thursday and her ANC has finally dropped down to exactly where they want it. 1350 is her number. PERFECT. 75mg of 6 MP 5x week, 50mg 6 MP 2x week, and 28 mg of methotrexate on Tuesdays. Just for my reference.
We are having fun enjoying the entire month of Christmas this year. We made our Sugar Cookies on Friday, saw Santa on Saturday and also checked out some Christmas lights. Today Ally and I took an awesome Christmas cupcake decorating class at our local cake shop. It was really fun, even though I didn't much have time for it, but we learned a lot and had a blast. I might even have to post pictures of our creations.
Her spinal is this Friday. She will be admitted at 8:30 am. Please pray for her spinal fluid to be clear. This is our only wish for Christmas!

Tuesday, December 7, 2010

Thanks WSU!

I have been neglectful about posting something for a while. It has been on my list for a while, but I was kind of waiting to see how things turned out.

Much to my surprise, I opened my mail a few days ago, and there was a check for Ally's Army for $3230.00. The amazing amazing people at Wright State decided to have a fundraising soccer game with Ally being the honoree and benefactor of the event. The wonderful part of this event is that the whole thing was done out of the generosity of their hearts. Noone had to do it for us, but they did. I hope that they trusted Ally's Army would do something worthwhile with the funds they have raised. The Men's soccer coach, Bryan Davis, was the leader of this event with NINE sororities and fraternities who also unanimously voted to make Ally's Army their charity of choice for the Fall quarter. They all did various things to raise money. THE ZTA girls were especially nice to our daughter Ally and came out to paint her nails right before we left for CA. They also made her a Build A Bear, brought us dinner the night of the game, and one AWESOME ZTA, Renai Bowers, spent an entire day making orange Ally's Army ice cream sandwiches for the event. She had never even met Ally. Who does that?? Well, Renai did (and now we love her and she also babysat for us Sat night, thanks Renai). And our friend Dr Bamberger, his son plays soccer for WSU, had an entire wine tasting lunch to support our cause at Jay's Restaurant. Thanks Brent.

We also had a quite a few of our friends and family attend the soccer game. It is so nice for Ally to see that support and we were quite grateful to all who attended.

At this time of the year, when sometimes things are stressful, I must remember that the spirit of the season lives in all of us. I have seen it evidenced over and over and over again by complete strangers.

So now we will pay it forward to two worthy organizations. I am going to split the money and donate it to two organizations near to my heart: A Kid Again (providing events for kids here locally) and A Special Wish, who funded Ally's wish to go to California. I will keep working for these organizations, both somewhat small and both who need our help to continue to better the lives of these sick kids.




Two prayer requests for today. My Dad is going into the hospital tomorrow to hopefully get his heart "shocked" back into rhythm. He has to go under general anethesia for this. He has been miserable for SEVEN weeks while waiting for his blood to get to the right thickness so they could safely do this. Praying praying that it works.

Also, starting to get anxiety about Ally's upcoming spinal tap. It is next Friday (17th). She has a few stray bruises and one weird rash all on her belly. Any little thing like that can heighten my alert and prayers. I just pray for spinal fluid free of all leukemic cells and that we can enjoy this holiday in the peace of our own home.

Sunday, December 5, 2010

Another Angel for us.

Sooooo. Heaven has another angel up there. Grandma Josie passed away on Tuesday morning. After being "asleep" and without any food/water/IV for ten days...she put up a very valiant fight. I can only imagine how strong her heart was. She surprised everybody by holding on so long. We just wished for her peace.

Her Obituary:
http://www.legacy.com/obituaries/erietimesnews/obituary.aspx?n=mary-joan-feisler-dailey-josie&pid=146871978&fhid=8452

Jerad, my sister and I traveled to Pennsylvania for the services. It was quite a sad time for me. Although I have to say the services were absolutely beautiful, just as she would have wanted. My Grandpa was so proud for that. He would just well up with pride and/or sadness and say "Janel, this is just what she wanted. To a tee." He told me that repeatedly. We honored her life with our memories and I enjoyed spending so much time with my Grandpa. I got to hear many more stories about my family that I didn't already know.

Although 91 is a good life -her birthday was the same day as her visitation at the funeral home :(..it doesn't take away the loss. And for me, well, I have this picture sitting on my piano. A photo taken not too long ago. A four generation photo of Ally, Me, Mom and Grandma. And now two of the generations are gone. And I am, GULP, the oldest generation. I am not very fond of that fact.

The good part in all of this is that she is walking with Jesus now. She got to see her daughter again. And I am quite certain that Mom was up their making her birthday cake. I even caught Evan telling his best buddy that Ma had a big birthday present waiting for Grandma Josie. Man, that boy has learned his lessons the hard way. But Heaven to him is a good place. And he is right. It is. So she lives on in happiness and we are only left here to mourn another loss.

The Reverend asked if I would like to speak at my Grandma's service. I did, along with my Uncle Doug. Wow it was hard to speak through tears, but I did it for her. She would have wanted it that way. The best thing I can say about my Grandma is that she always made me feel special. I could do no wrong in her eyes. Not too many people loved me like she did. So I wrote down my thoughts the night before and spoke this at her funeral service:

I have had the privilege of having my grandmother for 38 years. Not too many people can say that. And what a grandmother she was. If you could picture in your mind a perfect "grandmotherly type" it would be my Grandma Josie.

SWEET
LITTLE
HAPPY
LOVING

Any picture that I ever drew for her would bring tears to her eyes. Any gift was the best gift that she ever received. Any meal that was made for her would keep her full for a week.

She had the most pleasant disposition of anyone I've ever known. She always had a smile or a kind word for anyone.
Along with my Grandpa, she taught me how to have a long and happy marriage. I never heard a harsh word come out of her mouth. They were married for 65 years, living in the same house on California Drive for nearly that entire time.
I moved away from Erie when I was 5 years old--much to my grandmother's dismay. So for years we wrote letters back and forth to each other. Upon my graduation, she gave me a book with every letter that I had ever sent to her. She had saved every one and now I have a treasure documenting my life.
Her life was filled with raising three children: Gail, Marcy, and Doug. She was blessed with four granddaughters. And eventually, much to her delight she got to meet 5 great-grandchildren: 3 boys and 2 girls. Visiting with them was a highlight of her days. Thankfully we were all together for one last visit in August just before she fell ill. Her backyard was one of my favorite places on this Earth. I have many memories there and a lot of them involve Grandma and her birds. She always kept clean water in the bird bath and the feeders were filled so her "friends" could come to her house. She was also very diligent about putting a half of an orange hanging out there so the Baltimore Oriole would come. She loved the Orioles.
Her life was not without hard times. She suffered so while watching her son and daughter in law both battle cancer. And god bless her for having to face the unthinkable: She lost her own daughter Marcy (my mom) just about a year and a half ago. And shortly after that her 7 year old great-granddaughter was diagnosed with leukemia.
And all that Grandma could say was why them? "why not me?" In her infinitely unselfish ways she wanted to take their place. Grandma Josie will always have a very special place in my heart. She knew how much I loved her. She knew how much we all loved her.
2 days short of 91 years. She lived a wonderful life and she should be proud. And in her own words, the last words spoken by her to my Aunt, she said
"It was all good."

Many of our family did not make the trip in for the services. I promised that I would take pictures. Jerad did the best he could. And I have them all here to see. I am guessing most of you won't want to look at them though because they are sad. But some of the McHenrys/Feislers were not there and some of our family too. So here you go:


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