Tuesday, May 1, 2012

Keep on keeping on

In my attempt to only post with updates or interesting info, I realize that sometimes people worry when they are used to me updating so frequently and suddenly I fall off of the radar.  I try and only write when there is something to share or if there is something on my mind. The last thing I want to do is become a broken record. So, if you don't hear from me, assume all is well. I promise (even if it's brief) to update if there is anything to share. :)

Last night I tried so hard to write this update. I couldn't put my thoughts into words. It was such an incredible day and I just didn't know where to start.  I will try and re-cap a bit. Everything has been pretty mellow around here, which is wonderful! Kayla finally had her first day today with no GCSF. So, it was a very short day at the hospital with only School and Physical Therapy.  We have been outside playing and enjoying this hot weather. Yesterday, the hospital day was long. Kayla began a few of her routine tests to make sure her body is handling the treatment ok. Everything went as to be expected. The only change is that they detected a very minimal hearing loss in one ear. Basically, she can't hear very high-pitched sounds (like birds chirping). There is a slight chance it could get better and that it is only temporary. Of course, we are all just concerned because she still has two more rounds to complete.

We have to keep reminding ourselves that the ultimate goal here is to be able to leave St. Jude cancer free and remain that way! It would be nice to have as few side effects as possible. I know that her team of experts are doing everything possible to limit side effects. Some of this will be more visible later... time will tell. If we get to watch her grow and reach her milestones, that is all we really can ask for. Health and happiness.

Yesterday, we had a very special (and very out of their way) visit from Pastor Gravrock and his wife Jean. It was SO great to see them both! They are on their way, driving, from Southern California to Minnesota to greet their new grandson into this world. We were so amazed and grateful that they would go so far out of their way to come and visit us! Pastor Gravrock baptized both Anthony and Kayla before he retired. We have missed them so much. So, at about 3pm, I met them at the Hospital and gave them the tour! I forget how amazing every detail is when you visit it for the first time. It was fun to play the tour guide. Then we made it over to the Target House to hang for a few minutes in the apartment before dinner. While we were up in the apartment, we had a private holy communion. It was a special gift... Denny and I talked for a long time after they left about how good it felt!

I can not tell you what this meant to us. To have these prayers said in person.... I know they pray for Kayla every day, but having Pastor here in this private setting meant the world to us. Thank you!

We then did a quick tour of the down stairs of Target House 1 and headed on over to Target House 2 for dinner. They were having a "Fiesta" complete with a Taco dinner, live Karaoke and Desert provided by The Melting Pot (chocolate fondu, strawberries, cake, marshmallows and bananas). The room was filled. Spirits were uplifted.  At one point, one of the patients got up to sing. It was a moment I will never ever forget. She sang "Heal the World" by Michael Jackson. Ok, REALLY? Let me just tell you... watching a child who is clearly in the fight for her life sing this chorus:
Heal the world
Make it a better place
For you and for me and the entire human race
There are people dying
If you care enough for the living
Make a better place for
You and for me. 

I couldn't hold back a few tears. How could you not show emotion over that? I watched as a few other parents glanced away or quickly distracted themselves with anything they could because if you seriously listened to her sweet voice and those words, you could easily lose it! It was absolutely beautiful and a moment I will never forget. I get choked up just recalling it.

Even though it was very loud and we couldn't really carry on a conversation, it was such a joy that the Gravrocks were able to sit and witness these amazing souls and families here. It is one thing to post pictures or try to describe it, but a completely other thing to be here and witness the magic of what these volunteers do to make us try and forget, even if it is one moment, why we are here. After getting some face paint, Anthony disappeared to talk the Dj's ear off (likely about baby puppy). Well, the next thing we knew, Anthony was being announced and he was to sing "Who Let the Dogs Out". Haha. He didn't really sing, but we admired his courage a LOT! It was very cute. 

Our Not-So-Shy kid!

You should have seen the teens doing the Macarena!!! It was SO entertaining and fun! Talk about true inspirations..... 

After, we decided to do a quick tour of Target House 2 and let the Gravrocks get back on the road. It is about a 2 day drive from here to their son!
 Saying good-bye to our dear friends who mean so much to us... Thank you again for everything!

As we prepare for the next few days of scans, MRI's and a Lumbar Puncture we ask that you please think of Kayla and imagine her scans all unchanged!

 Look at all of that TPN and Zofran. This tiny fridge is easily half full with meds at all times.
 Grenades filled with zofran. Kayla gets this each and every night to fight the feeling BLECH off. It helps until about 6am every morning.
Denny's new hobby thanks to Sara Gravrock! Balloon animals... coming to a party near you!


  1. Dear Annie, Denny, Kayla & Anthony,

    What an amazing opportunity for you to be able to visit with your pastor that you had for so many years. It was so great to see the pics. of the Gravrocks with Kayla and I'm sure you'll cherish those pictures and that visit for a long time to come. They actually lived just a few doors down from us and we've been gone for approx. 1 1/2 yrs. now but heard their house was on the market I think about a year ago so now I know why. I know Kayla has some tests coming up and our prayers will be with you as they always are. As always, please give Kayla a HUGE HUG for us, and your entire family are always in our thoughts and prayers!!! Much love, hugs, & kisses to all of you!!!

    Love Cindi & Bob

  2. Annie,

    This update made my heart sing!

    You write so well, and we can feel the love all the way over here......

    How special for Pastor Gravrock and his wife to visit; I know that Kayla thinks the world of them both. Great support for you and Den too (and AJ as well!)

    And Who Let The Dogs Out? just melted me............Anthony, we love you and your "singing" talent!!!

    Continuing to pray for our Kayla each and every single day, as well as all of you to "keep on keepin' ON"......

    Neena (mom) and Baapaa (pop)

  3. How wonderfully special! What a blessing Pastor Gravrock and his wife must have been. I can only imagine that that very special communion will resonate in you and your family for a long time to come. The timing ironic, don't you think? A simple token of affection, a leap of love and faith to lift you up higher to refuel the tank as one would say, to continue to "stay strong" through the last half of this journey. God works in wonderful ways and his dedicated servants know when they are needed! Thank you for posting that it made my day, I am so happy that you had this special moment. OMG and the MJ song, I teared up just reading it, the love in that room for that moment must have been overwhelmingly tender and amazingly powerful, how could you not cry! Miss you Jayna

  4. I am so glad that you all had such special visitors. It must have been such a recharge of your soul to have Pastor Gravrock and his wife there. I am sorry that Kayla's audiology exams are beginning to show changes. I remember how scared I was when we realized Carli's hearing wasn't optimal. I worried about how her life would be and if she would be able to do what the other kids could do. Truly the only difference for her even with the hearing aide is that we have to do a little prep before water activities and super windy areas can be harder. Hopefully there will be no more changes but if there are...I can give you the inside track on how to get where you need to be with hearing services. We are all hoping for a healthy girl at the end of this journey. Take care of all of you.

  5. Just to let you know we continue to keep Kayla and all of you in our thoughts and prayers. I'm not sure I've ever told you but my sweet 80 yr old sister says prayers for Kayla every night and never goes without asking for updates when we talk. Susie and Rus