Thursday, October 27, 2011

Surprise Vacation Pictures

 Here are a few pictures from the surprise vacation that we took to celebrate the end of Ally's chemotherapy.  I have such fond memories of this trip!  We got to have the best of both worlds...a few days at Disney World...and a few days of just relaxing at the beach and the pool.  Everything went so well, and everyone happily got along.  It was kinda nice to just focus on the five of us and being together and having a good time.  Here we are with the most famous Mickey and Minnie!



Highlight for Ally:  Celebrating her 10th birthday at Disney World complete with fireworks after her birthday dinner!

Highlight for Carly: Meeting Cinderella and believing it was really Cinderella. 


Highlight for Evan:  Riding on Pirates of the Carribean, his most recent fascination.


Highlight for Me:  Relaxing on the beach with my family and looking for sand dollars.


Highlight for Jerad: Playing the famed Harbourtown Golf Course.  Oh wait, that was when we went to Hilton Head.

It will certainly be a trip that we never forget!

Wednesday, October 19, 2011

Appt update.

Her bloodwork came back great! ANC was somewhere in the 3000 range. As she continues to rid herself of the medicine in her system, the ANC will grow. Dr B says normal is somewhere between 5000-10000. What a huge huge huge relief. I had made myself almost sick over worry. The other good news is that her liver numbers came down to normal for the first time in over two years. This supports our earlier conclusion that the 6-MP and methotrexate were taking a toll on her liver. I was glad to see them normal. It is pretty amazing to look at a blood panel report and not see an "abnormal" asterisk on every single line.

She did have a crying spell over having to pee in a cup. Just flat refused. And then when they told her she HAD to get a flu shot (no choice in the matter) she just went ballistic. Huge crying screaming fit...two nurses and me holding her down....trying to refuse it and even batting at the nurses. She did the same thing last year. You would think a girl that has gotten poked by a needle in her chest hundreds of times could handle a very thin needle into the arm. Jerad and I are thinking it was just one more thing and she is so ready to be done with all of this. Regardless, it was ugly to watch and her little sister got to witness the whole episode and she gets her flu shot on Tuesday I believe! ugh

It doesn't matter though. All is good in the world for now. We got to rest last night without worry bogging us down.

One more hurdle. JUMPED.

AND one more thing: 15 years ago today I married Jerad. Happy Anniversary Jerad! I did not probably realize at the time, but I married the most laid back, kindest, biggest hearted guy there is. He would do anything for me. Honestly, he would do anything for anybody that asked. And without him to help me through all these trials over the last four years I would be locked up in a mental ward somewhere. Truly. I am so grateful.

Monday, October 17, 2011

Jittery

The Barnetts are back in town. I cannot even begin to explain how wonderful our trip was. It was so great to go on a "chemo free" trip (easy to get through the security with no liquids now!). The kids were so wonderful. They (we) all got along very well and we enjoyed being together for an extended period of time. We had a couple days with Dad and Barbara at the condo in Longboat Key. Then we drove over to Disneyworld (about two hours) and spent two nights and three days there. Three days was just enough for me and my feet! Lots of walking and we were always pushing two of the kids in a rental stroller....that's still the only way Ally can do it. We did Animal Kingdom, Magic Kingdom, and Hollywood Studios. I realized exactly how fun and special it was when we were leaving on the last night and Ally started crying because she didn't want to leave. But happy day...we got to go back to Longboat and have two and half more days at the beach! And we even found a few sand dollars. I have such a backlog of pictures to share from a multitude of things. I could keep this blog going forever...but now just trying to get back into the swing of things.

And honestly, I am finding myself in a bit of a tunnel tonight. Ally goes back to the hospital tomorrow for her monthly appointment. They will test her blood after a full month of no chemo and I have been extra anxious and stressed today. I know it is just one more thing I have to get through, but she has had a few things lately that make me worry (rash, headache, etc). A lot of people ask me how I have gotten by in the past with the stress of everything around me. Truth is...I have this uncanny ability to remove myself from this situation...almost as if it is happening to someone else. This is how I have been able to get up and speak on such an emotional subject in front of people so many times. I really don't let myself go "there" all too often. I change subjects in my mind about 100 times a day. This is why I may also seem so scatter-brained! But anyway, today the stress of Ally's test is in the forefront of all my thoughts. And today I couldn't seem to escape from it. As much as I tried to "change the subject" of my thoughts, the worry kept coming back. I just keep telling myself to have faith. Have Faith Janel. This is just another step along the way that I have seen so many other people struggle with.

I could use a few extra prayers though. And will post more when we know her counts.

PS...If anyone is interested, WSU Soccer is doing Ally's Army night again on Saturday night at 7. They are raising money on our behalf to donate to one of our causes. We would love to see any Army members there.

Sunday, October 9, 2011

Another surprise!

We pulled off one more monumental surprise for Ally. We decided to take her to Florida to celebrate her end of treatment and also her golden birthday. She turns 10 on 10-10! We didn't tell her or the other kids until 830 in the morning and we had to leave by 9! Unbelievably, we pulled it off and she had no idea. They were shocked, happy, and had lots of questions. No screaming though...not these laid back kids. As has been their nature their whole lives they are all laid-back go with the flow kind of kids. Which has been a good thing with all that they have faced in their short little lives. But it also means, no bursting into tears of joy about an unplanned trip to Florida. It's all good by me. That is just who they are. More to come....








And I still need to post some pictures from Light the Night 2011 which was another beautiful night. I am on a backlog of blogs lately, but right now trying to enjoy my family and all the little things I always miss as life rushes by in our normal lives. I think I even "unplugged" myself from my phone for most of the day today. I NEVER do that.


Happy Birthday tomorrow to my dear first born daughter Allison Eileen. So many people love you, but none more than your Momma. (and Daddy)










Sunday, October 2, 2011

Light the Night Walk 2011

Back from Pennsylvania, and off to a wedding in Hilton Head. Busy times around here. Jerad and I were lucky to have a weekend to ourselves to see our friends Pat and Kathy get married on the beach. Thanks to Grandma, Aunt Tara and Uncle Bunk, we knew our kids were in good hands. Although Ally did not really want us to go, it turned out she did really great and even spent the night at her Aunt's house in Columbus. This is a huge step for her. She has had so much trouble sleeping over the past couple years that she never wants to be away from her bed or her parents. She spent the night once with her Pa and now this....baby steps in the right direction. Her nurses at the hospital keep trying to convince Ally to go to one of Paul Newman's world famous camps for kids with cancer....to which she adamantly says NO. Maybe someday, though. Maybe.

I have to admit I am getting a bit more nervous as the days click by with no chemo. It has now been 2 weeks. Part of me just wants to run her to the lab and get a blood draw. But that wasn't in the plan and when the feeling comes up I just say a little prayer instead. I keep constantly studying her...is she pale? What is that rash? I feel so guilty for never seeing the paleness right before her original diagnosis, because now looking back at pictures it was very evidently there.

Tomorrow we are doing a 2 hour interview with K99 FM's Nancy Wilson...I was trying to prepare Ally for it. I said "you just have to answer questions about your leukemia and the hospital, etc" So we started talking: The best thing about the hospital: obviously, Dr Broccoli (as we call him). The worst thing: she started remembering the time she had pancreatitis in the middle of the night and begged us to take her there. Pain.

I have failed to mention on here until now....well I actually purposely didn't mention because I don't want to ask anyone to do anything at all for us....but we are walking in the Light the Night walk for LLS on Thursday night (Oct 6). It is again at the Fraze Pavilion at dusk with the lighted balloons. We have had huge teams for the last two years, but this year I focused on the Curesearch Walk instead. (Thank you by the way...we raised almost $7000!) But I love this walk and watching my girl walk and wear her survivor shirt and carry a white balloon. Anyway, several of you that didn't do the Curesearch walk asked me about it. Here is our webpage to sign up:

http://pages.lightthenight.org/soh/Dayton11/JBarnett

No obligation! Or you can probably just show up and look for the orange shirts too! We would be thrilled to have anyone walk with us. Supposed to be a nice night again.

I will continue to pray that many more people get to wear that SURVIVOR shirt including my sweet daughter Ally.