Long first day back

It is with emotional exhaustion that I share this update with you tonight. I know so many people love or have grown to love Kayla. We thank you all for being such an important part in this crazy journey. It was a very long day for Dad and Kayla. I asked Denny if he could summarize their day so that I could accurately describe it all here. Not being there is hard for me in SO many ways as you all can imagine.

Denny was a rockstar. Not that I expected any less.... He is such a great daddy. He sent me an email so I could update  you all here. As you can imagine, he is so busy there and short a hand (me). So responding the same thing over and over in texts is not what he needs to be focused on. As much as he loves everyone and appreciates their concern so much! You will see from this email just how little time he had.

So we had a lot on our schedule today.  First off we had to be to the hospital for MRI check in at 6:45. Normally this wouldn't be that bad except for the time.  But when you are at Grizzly house there is no kitchen and even their continental style breakfast isn't open that early. So we had no food and no way of getting food before our early appointment.  We checked in first and then rushed to the cafeteria that opened at 7 to get Kayla her bowl of grits before her long MRI.  We got back by 7:05 but we still were rushed in before Kayla even got a bite of her grits.  They wanted her on the table by 7:15. I was on stand by while they brought her back.  Around 8:30, I was wondering where they were at with it all because we were already due at our next appointment in B clinic.  I asked what had happened and they said that she would be done in 5 mins or so because she had trouble keeping still (which we found out was because the poor thing had to pee).  She came out by 9:15.  

We rushed to B clinic, where they called us in almost immediately as Kayla was playing catch up to eat her breakfast.  They proceeded to go over the transition from E clinic to B clinic and that this was the primary reason for all the testing before chemo.  Step by step they walked us through it.

I asked them questions regarding Aj and how the rules applied to sleeping arrangements and such.  The detail that we did not realize is that while we are in patient, Aj is not even allowed on the floor to see his sister. Other than patients, no one under the age of 7 is allowed. There are common areas that we can meet him, but as far as her room is concerned it will be off limits. We have to follow up with many more such rules that will be given to us regarding nutrition and what we can expect both in patient and post procedure instructions and how it will all work.

They checked Kayla's blood oxygen level and swabbed her nose. These are things they will do before every chemo treatment.  They exercise every precaution to ensure that her body can handle what is being given to it and can tolerate it.  Additionally, she will get an EKG, and has to do urine samples and a urine culture to ensure this, every time.   For those that don't know what a culture is it begins with a sterile swab of Kayla's undercarriage.  One sterile gauze coated in sterile water, one sterile gauze coated in betadine,  and one last gauze coated in sterile water.  Then she gets to pee in the white hat under the toilet bowl.  This produces a sterile baseline for them to work off of.  Next I need to collect her urine for the next 24 hours and refrigerate it the entire time. Once we arrive at the hospital for our next day full of appointments, I will first  need to drop it off at assessment triage where they put it on ice until it is done being collected.  I need to come back every time that she needs to pee throughout the day to continue collecting it while still going to our appointments. This is done to check the drop in her creatinine levels over time to check how her kidneys process it.  She also does double the bloodwork that has usually been necessary during the course of radiation.  Something like 10 vials total now.  Thankfully this doesn't faze her and I just make sure that she drinks lots of apple juice to keep her blood sugar up. My orders, not theirs.  

PT (physical therapy) was last on the agenda, and they said that she is doing great!  They just want to work with her on her balance and some toe to toe work.  Chemo can effect balance and some of the control in her hands and feet which has gotten so much better since going home. They said that they will do their best to keep her that way.  Kayla did manage some fun for the day, just despite the workload.  She did some painting of Kramer for the volunteers at C clinic after her EKG while I got her some soup (that she wolfed down) from the cafeteria. 

 On our way to do bloodwork we ran into Amy and Ashley from childlife (her two favorites)! It was great timing. We got a mini-break if you will while they got her to put her stamp on one of the many art projects that childlife is working on in the lobby throughout the week.  No surprise that Kayla not only did great work but was also swarmed by the photographers while she did it(have you seen this kid?  Those eyelashes deserve their own pictorial!).  It was great to see her doing something she enjoyed in this long day. 
 

Guess which drawing is hers? (ok... she signed her name!)

It was great to see her doing something she enjoyed in this long day.  Once we left the hospital we headed to target house to get the essential toiletries we left behind and Kayla's beloved art supplies and blanky.  She also could not wait to get her healing blanket(she said bc it makes her get better faster).  We saw some familiar faces that greeted us with affection. They led us down to storage so we could ransack our supplies and then head off to catch the shuttle. SO glad our car is on it's way! I also managed to reconnect with some of our favorite families that we have met here: Laurie(Connor's mom) and Sherri(Peyton's grandma)by text.  I can't wait till we get to see each other in person next!  Also my knitting circle is returning to Target House 2 on Friday. So, we will see if we can stop in to see my "ladies".  

Long day. Now, we are going to get some dinner before her dressing needs to be changed and she gets a much needed bath.  She took a cat nap today, minus the cat, but who can blame her?  More to come as it comes to me.  Love and miss my family that isn't with me and all we left behind already!  Talk to you soon. 

Den

Wow, is anyone else exhausted after just reading that? I am! And poor Den didn't sleep a wink (again). He was so worried about his alarm not going off this morning. I sure hope he has some serious shut eye. Instead of sleeping while Kayla did, he sent me that long email. Thank you Den for putting it into an email. There is no way I would have remembered all of that!  I know tomorrow is another long day for you both. Another 6:45am start time for her Brain MRI and other numerous appointments and tests.

We just heard that American Airlines had to make an emergency landing in Arkansas today! SO SO grateful they weren't on that flight! How scary!!
And I already hate to fly... lovely!

I promise to update everyone here. The next few days will be a lot like this... which is why Anthony is still home here with me. All is good. We are all just drained. Thank you all for your love, prayers and faithful support! 

I was about to sign off and then I found these...... These pictures were taken last year in March.  Look at how much things can change in the BLINK of an eye. I just had to share. You know me!

 See? Even when you "think" you are living a healthy lifestyle... you can be unlucky.

Being unlucky can't take away our spirit, our positivity, our outlook, our determination, our faith, our love for life, our gratefulness, or our sense of humor. We are LUCKY to have this family. Grateful for every day we get to spend it together. I am grateful for every breath she has and is taking. So happy to be able to share this message with all of you. I feel lucky.

Good night all!