Dayton's News Source :: Top Stories - Fmr. WHIO Reporter Sallie Taylor Needs Your Help

Dayton's News Source :: Top Stories - Fmr. WHIO Reporter Sallie Taylor Needs Your Help

Here is the link to the story with Ally (and me). My thoughts on the story are this:

1. They did an incredible job with the story. Even digging through my blog and finding pictures to put out there that really painted the picture of what we went through. Ally's fave nurse Rachelle, with her radiation tech Crystal (in her MASK!), and all those days of being skinny and bald. It brought it all back for me.

2. The Moms for Miracles group really cares and there was Sallie getting all choked up (Kathy and I did too, but they didn't show that)

3. I was so worried about Ally speaking...she is so quiet...but they got some great bits from her. She has had to grow up way too fast as a result of all of this has had to put herself out there a lot in the public eye. I am so proud of her. She does it well. And she looked cute with the close up on her freckles...

4. I have watched it numerous times, each time it makes me cry more. I STILL cannot believe that this happened to our daughter. It is almost like looking into a snowglobe into my world from the outside in disbelief. I can't really explain it.

5. And speaking of disbelief, I have been praying so much for all of the tornado victims down in AL and GA. My friend Erin Cobb lives in Birmingham and I would like to hear she is ok??? It just goes to show, yet again, that your world can change in an instant. We have spent two years fighting for Ally's life and in two minutes lives ended with those tornados. Sad.

Thank you Kathy, Sallie, and everyone who helped make that story. We are one step closer to more people understanding the impact that blood cancers (all cancers) can have on families like mine.

Watch the news!

Thanks for all the positive comments about Ally's counts. Believe it or not, after all of this time, we still love the support that we get from the blog. We still need our army and we still appreciate the prayers. Ally ended up having a great Easter weekend. I know personally I was finally able to sleep at night! Ally feels pretty good (always the belly pain) and has taken a liking to riding her bike and/or scooter around the block as many times a day as she can. It makes me so happy. Dr B has decided that he does want to check her counts again this Friday. We are back to going weekly. Miss Mona....she is the sweet tech that draws Ally's blood every week...well we have seen a lot of her lately. You know you have been doing this a long time when Mona is pretty much like part of our family. We love her. She is always hugging all three of the kids like they are her own.

I am posting some pictures from a few Easter events and the Relay for Life....

This is Renai....she has become a friend of Ally's since the soccer event last fall and organized the Relay for Life team: ZTAs for Ally's Army.



Here is Ally...with some of the other surivivors getting ready to walk the survivor lap. They all wore purple but of course Ally stuck with ORANGE.
Here is Ally with some of the ZTAs. Oh, and it poured and poured that night...poor girls had to camp out in it and keep on walking.

They gave Ally a survivor medal and all kinds of other embellishments. Then she walked around the quad with everyone yelling and cheering, using noisemakers, etc. It was pretty touching.

Here they are with EB.

I have a lot of nieces, but this is the "babiest" I got to hang with her on Easter quite a bit. Love her.

Ally with her Grandma.

Finding eggs at Pa's. Ally's great grandma was hiding a lot of them. Note the large bunnies that my Dad had going right in his family room. Typical.
The Mills cousins....

They were dyeing eggs at our family's Good Friday Fish Fry...

And finally, don't forget that Wednesday (today) is the day for watching Ally on the news. I haven't seen the story. I am a little nervous about it...so hard to sound intelligent when put right on the spot without a minute to think of your answer! We did our best though. Always working towards raising awareness on blood cancer. I think there are so many people out there that have no idea what all it involves or that kids are suffering from it everyday.

Fox 45 at 10 pm. ABC 22 at 11 pm. It will also air the next morning ....with a live segment from the studio with Sallie.

Happy Easter Weekend

I just got the call and still have tears of joy running down my cheeks. Her ANC went down to 2520. Still a bit high, but way better than last week (almost 6000) and trending down, not up. Her white blood count went from 6.0 to 3.4. This is also good. Nurse said her numbers looked better and he may just have to tweak her at-home chemo a little. They want the ANC about 1000-1500.

Praising God today. Of all days Good Friday. Reminds me a bit of a couple years ago. We thought my Mom was dying on Good Friday. We made all the preparations, etc and sat with her all weekend in the ICU. On Easter Sunday she made a miraculous (by all accounts) recovery and there was little to no explanation. We got to enjoy being with her for one more year.

Thank you so much for all of your prayers. My girl is out working on some Easter eggs right now and preparing food for our family's Good Friday Fish Fry. I cannot even explain the worry we have been through this week....the amount of time we spent in prayer...and now the tremendous feeling of it being lifted off of us in time for the holiday.

Happy Easter.

ANC HIGHER (ugh)

Just a bit of an update. We are still kind of in a waiting game situation. Ally ended up going to the clinic at school Friday with a very bad headache. The weeklong headache continued. I drove over to school and gave her some vicodin. She went right back to class without so much as a kiss for her Mom. That is just how she is. Amazing. However, I didn't want to go into the weekend knowing she was still in pain and worrying about the cause of the headache, so I called her Dr. His thinking was that the steroid was not causing the headache...but rather that she might be having an allergic reaction to the IVIG infusion she had gotten the week prior. He wanted me to stop giving the vicodin (said it is bad for her constipation, etc) and to give her benadryl instead. I did this Friday night. Saturday her headache was still there, but lessened and Sunday it was gone. Could be coincidence. I will never know. On the flip side, he said I could go get her counts done again. So we went on Friday. I was wanting the counts to go down and ease my mind. They did the opposite. Her ANC is up close to 6000 now. This in turn worried me more so that whole plan just flopped. It could be high for several reasons (illness, more chemo needed, steroids can even make it jump). So the waiting game continues and we go in again this Friday for more counts. If they don't go down by Friday I will not be happy. I feel a small bit better because she is acting fine again and playing etc, but I still just hate that 6000 number. I have found that cancer moms are VERY picky about what they want that number to be. Not too high, not too low. I have some pictures and a story to post soon....gotta get them all downloaded...but Ally walked in a Relay for Life event over at WSU on Friday night. It was quite amazing to watch her carry the banner saying Relay for Life and walk the survivor lap with a group of other people who appeared to be 5 times her age or more. All of the fraternities and sororities were cheering her on. Thank you ZTAs for all you do for Ally's Army. I promise to get the pictures out here soon. Many days I still get taken aback when I see/hear/read about my child (MY CHILD!!) being the face for cancer research, blood cancer hero, etc...when I see her face on these things...or watch her walking the survior lap and wearing the survivor shirt with a survivor medal around her neck...well I still start to think it is all just a very bad dream. Keep praying. I am holding strong to my faith that we will see lower numbers on Friday. Thank you Barbara for the picture taken while aboard our friends, The Soins, yacht in Florida. You might be seeing this on your Christmas card next year. (although Carly not cooperating with her cheesy grin)

Mid week update

It's been a bad week for Ally. She has suffered most of the week with a terrible headache. I believe it is from the steroids but cannot be certain. Tylenol won't even budge it, so I actually dug out the vicodin. We tried that yesterday and today. I hate to resort to that, but it does help her a little bit. After the four hours wears off....the headache comes right back. Her stomach seems a little better or maybe it is just one thing overtaking the other. The head pain could be taking precedence. She did wake up hungry last night and wanted a snack (typical of most steroid kids, but she hasn't done it in a while). So we gave her a little midnight snack....which meant Jerad had to set his alarm for two hours later because her 6-MP is given two hours after her last food for the day. (he is our designated 6mp giver, I do the rest) Jerad was gone every night this week working which also led to a long week for everyone. I am ready for the weekend and ready for my girl to feel better. I guess if she doesn't feel better by tomorrow afternoon I will call down to the clinic. Of course I am still consumed with worry and I think I forgot how much it takes out of me. I am not functioning at a very high capacity right now. It wears me out and things start to crumble around me. And then how quickly I can remember the worried feeling and inability to sleep at night. So keep praying. I do have an update from Kathy Hart on when the story with Ally will be on TV. The story is for a group called Moms 4 Miracles, with Sallie Taylor (formerly a news reporter) leading the group. These ladies are great and they are having a big golf outing/derby day at Yankee Trace on May 7th to raise money for LLS. The story is scheduled to air Wednesday night, April 27th on Fox45 at 10 and ABC22 at 11. It will air the next morning, as well. I will let you know if anything changes. I will also try to get an online link. I also heard the story was in the Dayton Daily News today (Neighbors) but only for Centerville/Wash Twp/Oakwood. If someone has a copy I would love to have one for Ally's Memory Box!!!

Here is Ally with the ladies at the Man/Woman of the Year Kick Off. One of the ladies is also the wife of Dr Dole (one of Ally's oncologists) We are grateful to them for taking the fundraising so seriously and doing this in her honor. They have been so nice to Ally...checking in with us often.

Update from our Clinic Appointment

I wanted to give an update from Ally's clinic appointment on Friday. Usually, they are somewhat uneventful, but not this time.

First, I want to do something that I haven't done for a while and that is ask my army for prayers. For Ally. I am trying not to get too worried, but I am worried and I have asked quite a few people already to pray for her. Her ANC number, which has hovered around 1500 for the better part of a year...has all the sudden shot up to close to 4000. Nothing has changed in her medication at all. We have not forgotten a dose (NEVER HAVE) so we are unclear as to why it would go up. The ANC is calculated based on white blood cells, which are produced when you get sick...but she hasn't been sick. Doctor B thought maybe something could be brewing (sickness) but all weekend has gone by and she still seems fine. So I guess there is just no rhyme or reason as to why this number has all the sudden gone up, so it just bothers me. The doctor told me not to worry. The nurse told me not to worry. But I am the Mom and when something new crops up that is just what I do. We are going back in two weeks, instead of a month, to get her blood checked again. So just pray about it for me and hopefully all will be well.

While we were there, the clinical nurse and Dr Broxson sat down with us to talk about some very significant findings that have come from the study that Ally is on. Most of the kids go into some sort of study...and this is why there have been huge strides in survivability rates because people are willing to be "tested" But the computer randomly picks what parts of the study you get...and you have to take what they tell you. No choice or no study. We signed on for it, reading very carefully all the agreements etc the very night that Ally was diagnosed. I still can't believe we had to make that decision with the mindset that we had at the time. In the end, we signed our daughter's treatment over to this study, but not knowing if we were truly doing the right thing.

Anyway, two very significant results came about. One...some kids took 14 days of Decadron right at the beginning and some took 28 days of prednisone. Both a steroid. There is now very strong evidence that the Decadron kids have a much higher 5 year survival rate. The study was so profound that they ended it early and have decided to give all ALL kids (less than 10 years old) decadron as standard therapy.

Ally had decadron. Praising God for this.

The second major finding had to do with the methotrexate part of her treatment. Some kids were admitted to the hospital and given huge bags of High Dose methotrexate over 24 hours followed by a rescue drug. They had to stay in the hospital for about 4 days at a time for this. Other kids were given Capizzi Methotrexate...this was just in the clinic and they were just given slightly higher doses of methotrexate each time. (via a push into their port) And no rescue drug was needed.

Again, the results were profoundly for the High Dose methotrexate treatment plan. Again, higher survival rates with this method. And again, all kids with ALL leukemia will now be getting this course of treatment and they are doing away with the Capizzi method. It is the new protocol.

Ally had the HD Methotrexate. She was getting the good drug.

I am not sure how we were so blessed that she randomly got picked for these two things and BOTH were the better option. And now her chances of survival are that much higher. The clincal nurse just looked at me and said "She's good. She's real good" And to think that HD methotrexate was absolutely the hardest thing we ever faced with Ally. But now, I am feeling as if it were all worth it. Spending all Fall of 2009 in the hospital doing it. Thank God it was the right thing to do.

Sorry again for all of the medical jargon. I like to put it out here because a lot of leukemia families follow our story. And it is just very interesting to me. The science of it. Amazing.

That being said, I still am worrying about the ANC number. And she is still really suffering with belly pain every single night. I feel horrible for her. So thanks for a little prayer for my girl...and for continuing to follow our story. We are still fighting the battle.....

Piano

Ally has been working really hard on another piano piece. I can actually say that I recognize this song. Bonus. I thought I would record her again since everyone enjoyed it so much last time. Well really it is just for my Grandma....an avid blog reader....so here you go Ruthie:

In other news, we are being interviewed by a channel 11 local news reporter tomorrow night. I believe they are doing a story surrounding the Man/Woman of the Year and that Ally is the honored hero. Makes me nervous, especially since Ally is not a girl of many words. I will try to post out here when the story will air so you can watch/DVR it if you like.

We are heading down to the hospital on Friday for monthly chemo. I am hoping that this might be her last IVIG (immunity booster) infusion. With the weather breaking, so is the illness, and I am hoping we get a break from this soon. It will make each appointment about 2 hours shorter. Our current monthly appointment runs about 5-6 hours.

I am writing this blog entry from my iPhone (a gift from Jerad which I absolutely love) I am listening to my girls running and playing at the playground. I also had the privilege of going on an all day field trip today with Evan and his first grade class. These are all gifts to me....things that were taken away from me but now things that I have back and enjoy even that much more. I am especially appreciative today as I learned that a friend of a friend just had their son Cayden diagnosed with ALL. I have faith that we will both make it through. Say a prayer for all the little ones who are unfairly dealing with these diseases.

Here's my girls. On a sunny night. The most precious thing of all....(Ally carried her almost the entire way home)

I also have even more vacation pictures to post. Gonna get to that at some point.

- Posted using BlogPress from my iPhone