Wednesday, May 30, 2012

Day +14 Round 3. What is normal?

This week I have felt enough anxiety for the world. As many of our friends prepare for transplants or scans and we go through our own batch of tests and scans, I catch myself holding my breath a lot. Last night as I tried to put my mind to rest,  I couldn't help but wonder if it would ever get easier. Waiting to hear if the effects from Chemo and Radiation have started to effect her innocent body... It makes me so sad to think of how much time I have dedicated to keeping these kids safe and protected from danger.  Here we are watching and waiting. Hoping and praying. 

A wise friend told me, not every person will know this kind of stress and pain. This I do know.  I have to find it within myself to be at peace with that.  I going to try and look at that as a gift we have been given instead of this sad injustice.  Where we might have skated through life living, or thinking we were living, this will experience brings on a whole new appreciation for the life we have yet to live. Colors will be brighter. Sounds clearer. Vacations more meaningful. Friendships stronger. Each milestone more cherished.  Instead of being bitter or angry I want to try and see all of this as a blessing. The lessons we have been taught here have not been a coincidence. It's what we do with it all that matters most. 

Kayla's ANC has started to climb which is great! She was at 1200 yesterday. Soon we will celebrate a "normal" ANC level, end our GCSF, and spend a week playing... hard! It will be time to prepare for our final battle. This one will for sure prove to be the most exhausting yet.  If not physically, mentally.

We did learn that there were some changes with Kayla's hearing. Her audiology report came back that she now has mild hearing loss in one ear and moderate in the other. Where this sounds shocking, it's not that bad! Luckily, it's only in the high frequency range. So, it isn't anything that will effect her speech or her ability to hear people. We expect that the Cisplatin will continue to do a bit more damage in this last round. We hope that the only change will be that the ears even out at moderate loss. This is what the audiologist is assuming will happen following her pattern, but you never know.   Then, we just really hope that the damage doesn't continue after she finishes her treatment which it can.  The audiologist will continue to test Kayla every three months when she comes back to St. Jude for her scans until we are sure that her ears have stabilized.  One thing we did learn is that the scientists have discovered that hearing loss can now be reversed in birds. This is huge. Up until that discovery, it has been irreversible. Now we just need to find a way to apply it to humans! Oh... and find that CURE!!!!!

Kayla had her EKG today to make sure that her heart is still doing ok.  Tomorrow she will have her pulmonary check up and continue with the rest of the tests to clear her for her 4th and final round.... hopefully for life.  She is one incredibly strong little girl. Wise beyond her 8 years. Full of life. Full of laughter. Full of fight!


  1. Emily (Hoburg) RaakaMay 30, 2012 at 12:51 PM

    We think of you guys every day and send you strength. Your whole family is amazing. You are raising two powerful and spectacular kids.

    Kayla's sparkly eyes, laughter and fight are a testament you all that you and Denny are doing. I am so sorry that you guys have to go through this. Thank you for sharing your journey and your beautiful girl with us...

  2. The Gouldy'sMay 30, 2012 at 1:40 PM

    We continue to think of you each day. Prayers for strength.... sending love.
    The Gouldy's
    Chris, Jared and Jeffrey

  3. This will be the toughest round but hopefully the fact that you can say "That was it! We are done!" (hopefully forever) can get you through some of the worst times. You guys have done an amazing job getting through one of the worst things that could ever happen to a family. You are almost there! Stay strong Kayla! NEGU! Betty Criesco

  4. I know you're trying to stay positive and I'm in awe that you are able to do it at all. Finding gratitude in this situation is an amazing achievement! Totally agree about this experience being life-changing. Your perspective and priorities will be completely different. It is hard when people get so bent out of shape about small things or bother you with petty stuff, but it helps you make decisions about who to keep in your life. Simplify! xoxo Allie

  5. Soon Kayla will be rounding 3rd base and heading for home base. With her family on each one of the bases, she's going to hit a Grand Slam and bring ALL of you back HOME to California, family and friends. Time to wear baseball caps....bring your best bats up to the plate and for Kayla to hit one out of the park! GO Kayla Go!

  6. I came across Kayla's story through FB and wound up reading her entire blog here. WOW! What an amazing family she has by her side. You are one amazingly strong family and have kept very positive throughout this process. When I laid in my bed last night and as I did my laundry in my own home, I felt very blessed for having that luxury now. As parents you never, ever think it will be your child and and as you have said countless times here, life can change in the blink of an eye. We do all we can to protect our little ones but are never guaranteed health.

    One thing that really stuck out was the woman you ran into when you went to the store to return something. She said "Kayla WILL be OK". I truly believe some people have that sense, and I felt goosebumps when I read that. Try (I know it's easy for me to say not being in your shoes) to remember that when you are having these tough days. She WILL be OK, this is just bump in the road that is smooth sailing ahead. Kayla and your entire family is in my prayers and thoughts every single day. Thank you for taking the time out of your busy, emotional filled days to keep us posted and sharing Kayla's story.

  7. As a Novato resident, I have followed your journey and read every blogpost, all 107 of them. Every evening, I check-in to see how Kayla is doing and know that you, your husband, and Anthony are her rock. You are almost at the finish line...yes, there are more tests to come...but you get to come back home. Your town is waiting for you with open arms and a deep appreciation for all that you have shared.

  8. Sending so much many prayers. You guys are incredible. Your strength, your love, your courage. I think about you, Denny, Anthony, your families and sweet, beautiful Kayla all the time. Everyday. Thank you for sharing this with us. oxoxo