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!