Happy Father's Day Day + 4

Happy Father's Day to all of the wonderful daddy's out there! In my extremely humble opinion, Kayla and Anthony are blessed to have the one of the best! I am lucky to have such an incredible partner.

How's Kayla? Well, we just returned from a 7 hour long hospital visit. 7 long hours of waiting. Everything moves in slow motion in the Med Room. The past couple days have been extremely hard on her.  She has been almost constantly sick. Every 30 minutes during the day and every hour on the hour at night... it's exhausting. She is drained. It's excruciating watching her and feeling so helpless.  We are beginning to notice a new pattern though. It seems that she is sickest while on TPN.  So strange! It just started after this final round.  Before we always noticed she would get sick when the pump ramped up and down, but now as long as it's running, she is sick. It's awful. We can't just stop the TPN because her body needs to be weaned off of it, plus she's not eating on her own.  Kayla is truly realizing that she is going to need to start forcing herself to eat soon! If only she wasn't so sick. Hopefully the next few days we will start to see a change for the better. 

So, we weren't too surprised after her 9:00am blood draw this morning to find out that Kayla needed Blood and Platelets. With how sick she has been, we had a feeling it would end up being one of those dreadfully long days and we were right.  No wonder she has been feeling so awful.  Her ANC has dropped to 200 so by tomorrow (or even tonight) she should be at zero. Guess what that means? This is the very last time hopefully forever that Kayla's ever going to be neutropenic. There is only UP to go from here. If we are still on the same pattern, she will remain here at zero for a few days and then that ANC will slowly start to climb again.  We will continue to be diligent in her care and keeping her away from any possible infections or sickness.  We will continue to rotate those pink buckets. We will continue to constantly bug her by trying to get her to eat!

Lately I have been feeling exhausted. I think the last 7+ months is really starting to catch up with me. All of a sudden the clock seems to tick slower and I am just feeling "done".  I don't know if this whole time I have been in shock still or running on adrenaline, but the steam is running out. I am relying on walls to lean on. Chairs to sit in.  Silence to meditate in.  Books to keep my mind busy.   It's like someone has just loaded my body down with lead or I'm trying to run in a pool.  Why now? Why all of a sudden? It must be because I can see the light at the end of the tunnel. It must be because we are almost finished with this part of our journey. Either way, I feel like I need to let a big deep breath of air out, but can only muster a tiny pant.


On a wonderful note, yesterday our town rallied behind us yet again! From the pictures, video's and messages, the 5K for Kayla was a fun day for all despite the nearly 100 degree heat. It was so awesome to get interruptions throughout the day seeing all of the smiles from people we love and miss so dearly.  It really made our day!  Watching everyone come together for us reminds us that we are not alone. We know that we have a town that is ready to hold us up as we for sure will need it from time to time. We can not thank everyone enough for coming out to show us how much you care for us and especially our sweet Kayla! We want to thank Nicole Choi who is literally an angel. She has sacrificed so much of her time and energy to help us and has never once made us feel guilty in the least for it.  Also, we owe a huge thank you to the entire team of volunteers who graciously stepped up to help in any way they could. And of course, thank you for the sponsors and donors!!! We really can't thank you all enough. You all mean more to us then you can imagine.  

 

Here is a video that our dear friend Mark sent me of a bunch of the kids and parents cheering 

"Stay Strong Kayla Rose"

I love this!

I want to extend a special HAPPY FATHERS DAY to all of the incredible dads out there. We have quite a few dads who have been following this blog diligently and who have even confided in us that it has changed their relationships with their own families. For that, I am grateful for this blog and for the ability to be able to open up and share this journey with you all! To know that it has helped in that kind of a way is just so awesome.  Now, if you can... go hug your dad, your kids, or someone you love.  Just simply because you can!

Day +2 Final Round

Well, it's been a not-so-fun day of rotating pink buckets about every 30 mins. We have them carefully placed throughout the apartment. One on Kayla's bed. One under the side table next to the couch. One in the bathroom on the edge of the tub.  She makes consistent grunting sounds letting everyone within ear shot know that she is feeling miserable.  It will be like this for about a week. It's pretty much a given. Poor kid! She still finds those few moments after heaving to give us all reassuring smiles to let us know she's still in it to win it. All this fight leaves her exhausted. Especially since it brutally started at 4:30 am. Sadly, we had to skip school because she was just too exhausted and barely was able to go to the mandatory GCSF appointment.

Dad makes a wonderful pillow

Recently, Kayla mentioned that one of the things she really missed about home was her chore chart. I know, REALLY??? Yep. That's Kayla. She is a kid who constantly aims to please and loves to know what is expected of her. She likes rules and boundaries. Such a dream child! So, I remembered that at the last Bingo night we went to, she had won this dry erase board. Perfect! Denny and I thought up a couple of easy goals, starting very simple. You will all laugh when you see how she changed our simple list.  First, this is what we had on there:
-10 mls. of fluids twice daily
- snacks 4 times a day (this could be one cracker, a bite of something, a sip of soup... small goals!)
-Brush teeth 2 times a day

Well, Kayla did not seem happy about this at all. At first I was thinking, really? Is this too hard for her when she is feeling so awful? She just kept whining and whimpering and not really able to verbalize what was wrong with this tiny list. Until she finally admitted that the list was missing something. She said she would be happy if I would please add two more things. So I did... and she was much happier! This kid is too funny.

So, Make the bed and Skype someone were goals she wanted added. These are not set in stone... just goals. You can see how much of these she accomplished today. Kayla is promising to brush her teeth in just a few... so that's good! She ate 1/2 of a mini chocolate chip cookie today. That's it. It was about the size of 1/2 of a grape.

The next few weeks will be filled with lots of appointments. They need to see where Kayla is at compared to where she was before receiving treatment. We will be meeting with OT, PT, Speech, and Psychology. She will have an audiology evaluation, MRI of the brain/spine and another Lumbar Puncture. During this all, we will begin to wean Kayla off of Lipids first, then TPN. This is where we better start seeing some real fight for her to try and eat again. If not, we will be here until she does. Last, her central line will be removed. We are so thrilled and proud that we made it since December with zero line infections or other issues in regards to infection. I am sure it had a lot to do with how extremely diligent Denny and I have been with sterility. I know things can happen even if you do everything right, so we are extra grateful for how lucky we have been.  We are starting to send boxes full of things we have accumulated here back home. We are trying to figure out meals to include all of the things we have stored in our cabinets and not over buy now. It's time to start our approximate month long preparation for our journey home. We have the most incredible town waiting to embrace us in the next phase in our lives. For that, I am grateful for this blog. Grateful I have been able to have a place to share this journey with many people. Wonderful, amazing people who have grown to love Kayla too. Last night, I finally spotted fireflies! I can't wait to drag both the kids and Denny out after dark once Kayla is feeling better so they can see them and witness the magic for their first time! This is something I have been waiting for ever since we learned we would be here through the summer. I grew up with these magical bugs... they are just so cool! It's something you don't see on the West Coast because they need humidity to survive. It's all about finding the beauty no matter where you are.

Tomorrow, our friends in Novato will be gathering at the 5K for Kayla. Some will walk. Some will run. Some will come for the food and FUN events after.  I know all will gather for one reason. To cheer Kayla on and help her to cross over her own finish line. Soon,  she will! I can't thank the incredible team of people who are behind this enough. What a wonderful day it will be. We will be thinking of you all and looking forward to some really fun pictures!

No-Mo Chemo!!!!!

She did it!!!! Kayla did it! We are so sooooo proud of her!!!!!!

Brain Surgery.

 31 rounds of Radiation to the brain and spine.

4 Rounds of Chemotherapy.

One very amazing and brave little girl named Kayla.

I am swirling in a very euphoric place right now. Somewhere between shock and a very bittersweet love for all that we have just been through.  

St. Jude

The greatest place you never want to have to be

So grateful for the love and care you have shown our family

In the video and pictures you will see Miss Theresa. One of Kayla's most favorite people at St. Jude. She made life during Chemo bearable and for that, she has a very special place in our hearts. We sure will miss her. We promised to visit in the Fish-Bowl (no further!!) when we come in the future. No room on the BMT floor for us! So much love for her!!! A special thank you to Michaela, Kayla's awesome 2nd grade teacher here, for video taping this so that I could take pictures. We are SO glad you could be here for such an unforgettable moment! We love you and will miss you so very much!!!! You know we will be visiting you every time we come back too! 

Michaela and Kayla :)

 Last Stat Board!

 Last Vital Check

 Party Time!!!

 I love how PROUD she looks here. And she should be!

 A blur of Confetti & Love!

 Admiring the tiny pieces of paper that surround her wondering who would be cleaning up this mess?

 Kayla and Miss Theresa

 Get these sticky things off of me!

 "Come on Kayla, dance with me baby"!!!

                                                       

SO proud of our graduate!

All over the world right now, kids are graduating Pre-School, Kindergarten, Elementary School, Middle School, High School, & College. Our celebration is very different.  Today marked the day that Kayla graduated from the Bone Marrow Transplant floor at St. Jude. She has officially finished the hardest parts of her treatment here and we couldn't be more proud of how strong and courageous she has been throughout. We are so full of hope that this will be the hardest thing she ever faces in life. Hopeful that she grows to be a very old lady! I look forward to all of the milestones to come. So very hopeful for a healthy future and grateful for every breath.

Day -2

So, today started out with a little bit of a twist. Last nights labs showed that Kayla's potassium levels had dropped. Not really too big of a problem. They would give her potassium supplements through her IV bag to get them back up to where they needed to be and we would re-check in the morning. Well, in the morning, her labs showed that her potassium hadn't responded at all to the supplements and also, her magnesium had dropped as well. So, more potassium and now magnesium would have to be given again and her blood re-checked to make sure her body was in a safe and stable condition to receive her chemo.  Each bag hung for about 2 hours each and couldn't be given at the same time. Once that was complete and her blood was re-checked, all was clear. Today, Kayla received her FINAL doses of Cyclophosphomide and Mesna. Kayla is a trooper and her body has remained stable since. Unfortunately, but not unexpectedly, her body still continues to have fevers that come and go. Multiple tests have been given to determine what is causing them. Instead of getting annoyed and assuming they are "normal" like always, I am finding myself extremely grateful that they have all continued to come back normal so far. You never know! Fevers around here are no joke! Thankfully, all is good so far!  Kayla received her VERY special legacy beads today. She will be very proud of these ones once she is feeling more like herself again.

The Green Beads are for the Chemo she has had this round (an early one for the Vincristine she will get on day +6). The blue bead is for Kayla's stem cell rescue. The Flower is for the end of BMT Transplant, meaning the last time she will receive her own cells. The beautiful silver one? That is my favorite. That means "NO-MO CHEMO"!!!! That's how they say it here.  :)  How beautiful is that silver bead?

Skyping with "Sissy"

Tonight, Anthony built a fort in-between the two twin beds. He was so excited to sleep under it calling tonight "the best night of his life". That brought me to tears. Really? Not sure if it was because this shouldn't be the best night of his life or because it probably really has been the best night in a really long time... Just ready to create nights ahead when we are home that blow this "fort" out of the water!

When you are only four, it's the simple things.  Out of all of the things that have happened here, I bet he will always remember this fort!

Good night Anthony......

Day -3

Today Anthony and I picked up our blank wall plaque. Everyone who lives at the Target Houses decorate one when they are about to leave.  They hang behind a protective plexi-glass encasement for everyone who walks the halls to admire. We have no idea what to put on Kayla's square yet. It will come to us. Right now, I stare at this blank palate knowing it is a very important symbol of the time we have spent here. How lucky we have been to be here at St Jude. How blessed we are to have been able to have a place to lay our heads at night... and how proud we are of Kayla.

Things are going just as expected. Kayla had her Mesna and her Cyclophosphomide today and will again tomorrow.  We have fevers on and off. Kayla's face is once again fluid filled and almost unrecognizable. Still beautiful. Just not her normal Kayla face.  As we can all expect, she feels awful.  It hurts to smile. It hurts to talk. So she sleeps and watches movies. I try and guess what she is thinking so she can just nod.  It's a good thing we are so connected. 9 times out of 10 I can usually guess right.  We see little spurts of energy and light and we cherish those moments to get us through the day.

As I walk the halls on the BMT floor this time, I feel an even greater sadness because so many of the rooms there occupy our friends. Friends who's children are all fighting right now. Children who I am growing to love more and more each day. I came into this with only Kayla on my mind. She was my one and only concern. Now, I am so attached to these families and kids! It's amazing how strongly I weep with them and for them when they are having their own struggles. Even if they are not mine, I get it. I can't help but feel anxious for them all. Watching as the doctors approach friends rooms knowing that they are holding important life altering information sends my stomach whirling around and my breathing changes. We all wait anxiously to either meet in the halls or read their precious updates online.  We are all in it together.  So as our moments pass by slowly right now, we cherish the fact that we are all still here. Still fighting. Still finding time for smiles and even laughter. Thank you to all of you who have been so strong in your love for us and for all those who fight.

                                "When you don't give up, you cannot fail."