Friday, March 23, 2012

Day + 4

Today Kayla's counts as of this morning were at 100. So, just to clarify how fast they can drop, her ANC went from 3,700 to 100 in two days. I was surprised at that.  She is feeling really crummy poor girl. She walked slowly down the halls (but she walked!) as we went from clinic. A/T to OT and the Med Room. We had a nice long lunch break in between where we were able to get a few bites of soup down too. That was good!  Denny and I are pretty confident that starting early next week, Kayla will be started on Lipids in conjunction with her TPN. Lipids are how you really pack on the fat and calories so we have learned. We are all thinking that if we can get as much weight on her right now as possible, the better for her next round inpatient. Her weight has stayed stable at 16.4 kgs. (36.8lbs). She hasn't gained any, but she hasn't lost any either.

Today Kayla started her day with a tiny bit of energy.  I didn't take this picture, but Anthony is insisting I share his masterpiece with you all. (our budding camera man!) Next time, he says, he will hold still so it's not fuzzy like his baby puppy.

After lunch in an attempt to get fresh air and pass time before her next appointment, we went for a walk around the grounds. They have this beautiful garden that is dedicated and built in honor of the wonderful Danny Thomas. It is soooo pretty. Especially this time of year with the Cherry Trees in bloom. We sat out there for a while and tried to take our time. That is hard to do! Especially with a very active 4 yr old in tow. He doesn't sit still... EVER. ;) We still enjoyed every second of it.
Keeping my distance from her while her mask is off is the hardest thing for a mommy!
I hate the marks that the mask leaves behind..... mostly, I hate seeing my baby fighting to smile

Tonight, I can tell that Kayla has hit her bottom. She has little to zero energy.  She tells us that she is not feeling well at all. I asked her what she knows about Chemo. I was surprised that she didn't really understand what it was by now. I happily and sadly re-told her in a very simple way why she needs it and how Daddy and I, along with her doctors, think this will help her to keep the cancer from ever spreading to other places. We hope and have faith that this will win the battle in her body and keep it gone forever. After we had the talk about the cells in her body, the good and the bad and how the Chemo kills both and why, she nodded quietly. She nodded with her blankie up to her nose and mouth like she always does when she comforts herself. She understood why she needs to feel like this and how it's "normal" after getting Chemo. Most importantly, I reminded her it's only temporary. The doctors anticipate it will take about 10-14 days before her counts are back up. We will wait and try to relax into the process. Of course now, even though it's a weekend, this doesn't mean time off from the hospital. We still go... every day. They keep a close eye on Kayla and I am very thankful for that. If her platelets or hemoglobin drop too much (which are both on the verge now) Kayla will receive a blood and/or platelet transfusion.  Both are very common around here. Denny and I are looking into becoming donors ourselves. We realize now how important (and EASY) it is to do this. Of course we would love to give first to Kayla (if it's fresh enough) or give to the universal blood/platelet supply here. Denny and Kayla share the same blood type. After additional testing he would be able to donate directly to her. I do not have the same type, but could and would happily donate to the universal supply. We learned today that 100% of the donor's blood that is given at St. Jude is given to the patients directly from inside donors. However, this only covers 65% of the supply needed here.  The rest is collected from outside sources. We also were reminded that if Kayla spikes a fever of anything over 100.0 we will have to admit her back to inpatient. We are SO hopeful that we can keep her fever free. We have never washed our hands this much in our lives (and I am a hairstylist in water all day... Denny a plumber... both water centered jobs). Even Anthony is learning the constant routine of hand sanitizers and hand washes. He knows that they are so important and doesn't have a problem protecting his sissy.

This weekend will be filled with movies and lots of rest. Tonight She is fighting to eat even a few bites of dinner.  We are grateful at how hard she is fighting off how horrible she must be feeling. Tonight I hate the sadness, noises of pain and feeling crummy coming out of her room. Tonight it's hard for Kayla especially. Tonight we keep reminding each other that this is temporary and to remember the end goal.... being able to utter the words cancer free.


  1. Stay strong Kayla! You are such an inspiration. I heard about your journey through a friend in Chico, and I wanted to let you know that you rock! Keep your beautiful smile, cherish this time with your family and know that there are many of us cheering you on!

  2. Annie & Denny, Kayla & Anthony-- You are all so strong. I know that the day to day is difficult, but in hindsight maybe it is better that Kayla is now on TPN. You can put your energy & love into comforting Kayla instead of trying to get her to eat at every meal, and anything she does eat is additive, especially as the effects of the chemo kick in. Your journey is shared by so many and we know that God is guiding you through these challenges. NEGU! Love you, Leslie

  3. Oh, Good Lord, Your words take my breath away and give me so much more in return.
    We send you love and our hearts full of gratitude. Bless you all. You make us better beings. Tell Kayla and Anthony that they amaze us, and so do their parents, family and friends. Keep breathing. You are the strongest beings we know. Much love, Mary and Frank Hoburg

  4. We are sending you big hugs and a ton of love. Stay strong Kayla! You are an amazing warrior with an amazing family around you and an enormous amount of friends rooting for you and sending you love. If there is a way I can donate my blood / platelets to Kayla, please let me know. Love you guys!

  5. Stay Strong Kayla and family! I'm reading your words Annie and it is taking me directly back to when my mom went through this. And it is VERY hard to live through this, to be with someone who is going through this and being able to do very little. But it works! It truly does work! My mom is cancer free - going on 4 years now - and it is wonderful! YOU WILL get to the other side and this will just be a passing memory. I know in my heart you will all get there. Stay strong! Thinking of you always and sending you strong, positive, healing thoughts. XOXO, Erin S.