Tuesday, May 31, 2011

I am back!

I am back after a wonderful weekend spent with my college roommates in Sedona Arizona! We had three straight days to just kick back, relax, hike, swim, go to the spa, eat, and chat about life in general. Wow I feel so grateful that I had the opportunity to go (thanks to my hubby!) and even more grateful that I have six lifelong friends who still long to be together. Not everyone is as fortunate in that area as I am. I personally think I hit the jackpot on that one. Here are a few of my favorite pictures from the trip....

My girls....

We had just hiked from 5000 ft to 9000 ft. Wow it was so amazing to be up so high. And there were butterflies just whizzing all around us. It was one of the most amazing spots I have ever been. And pretty much noone else was there but us.

We were so high some trees didn't have any green?

Our spa pool. Ahhhh. They delivered frozen grapes to your chair. I think that says it all.

Love this picture so much....the sunrise over the red rocks from our deck! Yes I was up super early every day because of the time change!

My friends did a very good job of keeping my mind off of things. Last Friday was the two year anniversary of Ally's diagnosis. I speak a lot to other families that are going through the journey and two years seems like a long time, but then again it doesn't. Well, last year seemed like forever, but now time seems to be flying. I cannot believe the things that I have seen, heard, and lived through since that day. Not just bad, but good too. Ally's Army has made so much good come from a bad situation. I am sharing my story with an audience of 500 or so (gulp) on Thursday night when we go to the Man of the Year final ceremony/auction, etc. We do our best to get the word out there and try to do anything to stop this disease. I think Ally's Army is like my part time job now. I'm always doing something!

Ally is not feeling so great today. She has headache. Stomachache. Ended up getting out of the pool crying at swim practice. It makes me sad. I don't know why she feels cruddy. I never do. Maybe she is just getting a bug or something. But I am a little extra nervous tonight because she is due into the hospital at 830 tomorrow (Wed) morning for her spinal tap and chemo. The procedure takes enough out of her as it is, so hopefully all goes well with her not feeling so well.

Extra prayers tonight. If all goes well, she will only have one (ONE!) more spinal tap after this one to finish out her protocol of 28 months. But I cannot even think too much about that yet.

Sunday, May 22, 2011

Ally's Army hits Alabama

I wanted to post an update on Ally's project of raising money for the tornado victims in Alabama. We had a two day garage sale...well our neighborhood has about 45 homes that have the sale so we get A LOT of traffic. We cooked about 130 hotdogs and we had a nacho machine and water. We were super busy with it both days...and we ended up raising about $150 after we paid for some of the food. Here is a picture of my sister manning the sale (she is probably gonna hate me for this)
Melissa and I had to do some of the work when Ally was at school, but she did it the rest of the time.

We took the money and bought a bunch of supplies and then gave the rest of the money to help Coach Rob (swim coach) and his wife Melisa get to Alabama. They are originally from right around where the tornados hit. They ended up hauling a huge trailer stocked full of relief supplies from Beavercreek to Alabama this weekend. They sent me this picture of Rob in front of the trailer wearing his Ally's Army shirt, so I had to share.

We have had another busy weekend...starting out going to the Dayton Children's board retreat up in Columbus. Jerad is on the board of directors for the hospital (and has been since before Ally's was even diagnosed) On the second day he got up and told everybody Ally's story...and Jerad doesn't like to talk about it in public because he gets too emotional...it is usually my job....but anyway he helped to paint the picture as to how valuable the hospital is to so many. We are so lucky to have a designated children's hospital 20 minutes from our home.

We also had soccer, baseball, dance, and family pictures taken (thanks Erin). We even got to enjoy the opening weekend of Fox Hill swimming pool which the kids absolutely loved.

As you can see we stay busy all of the time...sometimes I find myself complaining that we are too busy....but I cannot complain for long. It will be two years this week since the dreaded day. How far we have come.

Ally had bloodwork done on Thursday and her ANC has creeped back up to 3600...even with Dr B increasing her chemo. I am guessing he will probably increase it again. I am waiting for him to look it over. She also has a spinal tap coming up next week. We get a bit anxious about these and ask for some extra prayers that she will do well and the fluid will remain clear. It is starting to feel like summer around here...and we have many plans to make the best of it.

Wednesday, May 11, 2011

Clinic Update

I apologize for not posting sooner...had a lot of people asking me what was going on and I have been neglectful with my blog! I have been busy getting ready for our neighborhood garage sale. For three years someone has been sick, first Mom then Ally...and I am continually amazed as to how much CRAP can accumulate when you are just struggling to get by. So it has been very therapeutic to get it out of my house now!

Anyway, we went down to the clinic on Friday and had a world-record two hour chemo appointment. That is super quick by our normal standards. Ally's ANC continued to be high...sitting at 2500 that day. Dr B seemed slightly hesitant about raising her chemo levels, but eventually he did. He raised her 6-MP for two days a week and is giving her another ml of methotrexate every Tuesday. (from 14 ml to 15 ml) He wants to look at her liver levels again in June when she gets her spinal. They are still high, but not out of control. It's funny how as a cancer parent we just accept so many things. High liver levels, ok, cataracts, sure, 20% chance of brain tumor, well...ok...brittle bones, no biggie....we just accept everything under the umbrella of please just save our daughter. We will deal with the rest later.

The scary thing is Dr B started to talk to me about being done with chemo. To which I promptly stopped him from discussing. I can't discuss it. I don't want to discuss it. Not yet. (I do believe the date is Sept 16th.) He just laughed at me and said ok. It is still months away. And I am a big believer in not jinxing anything.

We had a very busy Mother's Day. Church, up to Columbus, back to Dad's house for a fancy pasta dinner. Mother's Day is not so fun for me. I try. I do. But the void is still there and I am sorry I just can't pretend it is not, contrary to what most people would say to me...focus on your kids, yada yada yada. Well it is hard. But both my husband and my Dad tried to make the day special for me (and of course the kids too). And for that I am super grateful.

Back to the garage sale thing...Ally, in her infinite entrepreneurial ways (ie concession stand) has decided to sell nachos and hot dogs at our sale. Not to make money for herself, but wanting to help those tornado victims in Alabama. They are working on it both at school and via one of her swim coaches (who is from Alabama). I am proud of her for wanting to do something. One thing that these past two years has taught her is to give back. Not too many 9 year olds think about money in this regard.

I need to post some pictures from the Moms 4 Miracles event we attended on Saturday too...a great showing and hopefully more money raised for a good cause.

Thank you to Uncle Brad (Ally's Godfather) who ran a half marathon in Columbus with Team in Training on Saturday with Ally's name on his back. Thinking about all of her pain and suffering is what got him through...

Thank you to Aunt Melissa (Ally's Godmother) who tonight had 10 inches cut off her hair and donated to Locks of Love in Ally's name.

We couldn't be more blessed with a better Army. Thanks for all the prayers for our girl Ally.

Thursday, May 5, 2011

Piano Recital


I wanted to share Ally's first piano recital with you. I think her song (called Starfish at Night) is only 40 seconds or so...but I thought she did a really nice job. It is hard to get up on stage in front of a group of people and she has only been playing the piano since September. I know from personal experience it is hard to learn piano too! We were very proud of our daughter, who looked so grown up that day. And in typical Ally-fashion....she said she was not nervous at all. Man it takes a lot to rattle that girl! I am still not sure what does!

She has been feeling okay. Some belly pain, as usual. I did take her to get counts again last Friday and she shot back up to 3500. Again, they want the number about 1500. So, we will see what the doctor says. I am feeling more and more convinced that she needs more chemo because she has gained some weight. The dosage they started last summer was based on her weight then...and I think she is up about 10 pounds. We can thank her lovely steroids for that. They never seem to leave her system, even though she takes them 5 days out of every 28. She has such such trouble sleeping and is always hungry and begging for food. Usually food that is not healthy. I definitely try not to give in on this, but sometimes she gets the best of me. After all that she has been through, and knowing the meds are causing it, I have trouble saying no sometimes. But I do think we do a pretty good job...all things considered. She wants to start swimming again for the summer season and the doctor thinks that is the best thing for her. In fact he told me if she was not swimming, he might go ahead and put her into some physical therapy because of her joint pain/tightness, etc. So I am hoping the swimming just works out.

Believe it or not, we are back at the hospital tomorrow (Friday). 28 days just comes so fast. It is a regular chemo day, but a bit shorter as she won't be getting the IVIG immunity infusion now that we are out of the sick months. We will see what Dr Broxson says about these ANC numbers. I am feeling less worried about it, even though they went up, because they seem to be hovering in the same area.

Will update more after our hospital visit tomorrow....