Day + 12 = Getting Closer!

It has been a nice and happily uneventful weekend.... and then Monday hit.  We still aren't finished.  Today, Kayla had a very full schedule, but mostly we waited anxiously to see where her counts were at. You just never know.  Sure enough, Kayla is at 700 (and climbing), but she would again need blood. This is the first time she has needed blood this many times. I guess we can just account for it being from the accumulation of treatments. SO glad it was the last one! Hopefully this will be the last time she needs blood as well.  Of course the Med Room was crazy. We knew it would be a long wait before they had any blood products ready for us so we opted to go home, get our stinky girl bathed and her dressing changed while we waited for the Med Room to call us. After 3 hours, we called them to see how it was looking. (Glad we didn't wait around!) They said that a lot of sick kids came in and that took precedence so they had to reorder.

Finally, just after 6:00pm, we got the call that they were ready for Kayla. Denny opted to take Kayla in because it was going to be so late when they finished. Unfortunately, when they got there, they STILL weren't ready. They didn't start until about 7:15 pm. Usually blood takes two hours depending on how much is in each bag. So, I figured they won't stroll in through the door until close to 9:30pm. That's a 13+ hour day for our lil' girl!

This week is going to be pretty hectic. Luckily tomorrow we will get a slight break after today. Kayla has Camp at 9:00 (which is through the school) and just her GCSF in the Med Room at 10:30.  (so, they will start at 11:30 the way they have been moving lately!)  The poor girl is going to need the break. Wednesday, things speed back up. She has an MRI of the Brain scheduled at 7:45am, Camp, School, GCSF, Audiology Evaluation followed by a photo shoot. This will be a fun one! Kayla will be doing some pictures with Michaela to show off the school program at St. Jude! We have been SO incredibly grateful to this program for keeping Kayla on track. We feel very confident that she will be ready for 3rd grade. (honestly... not like I'm that concerned) Kayla is such a people pleaser, especially when it comes to her teachers. She will have no problem getting where she needs to be if she isn't already.  Thursday is busy-busy. Friday we start at 6:45 am for an MRI of the spine. We are not expecting any change. Just protocol. Still, feel free to throw those positive prayers, thoughts and vibes our way especially on Wednesday and Friday! They have been really helping so far!  Kayla will have her counts re-evaluated on Wednesday. If they are over 2,000 they will be re-checked on Thursday to eliminate GCSF!!! It might take until Thursday though. We are extremely confident that this weekend she should be free from those LONG med-room appointments and B Clinic! HOORAY!!! We can't wait to be back into the wonderful hands of Dr. Gajjar. We have missed the team there. Team being the key word. We can't wait for our no-nonsense doctor who will tell it like it is and whose opinion I trust more then any other!

Our friend Connor (remember, he is a week ahead of Kayla in treatment on the same protocol?) just got some great news today! First the really great news! His MRI has shown that his there is no new growth and some of his tumors have shrunk! His Spinal Fluid has also come back NED (no evidence of disease)!!! They have decided to pull his central line as well. This is a HUGE celebration. Originally they had thought they would need to keep it in, so you can imagine the immediate relief this shows this wonderful family. Also, he is off of TPN officially now! So, they are packing and could go home as soon as next week. Just incredible. Again, bitter sweet. We will miss them! We have stopped giving Kayla lipids (the fat/calories that go along with TPN) So now, she will have to really eat to keep the beautiful weight on her tiny body.  She asked for Mac N Cheese for dinner... that's a start! Now, if only we could get her to put more then 4 bites in her belly before feeling stuffed. We will get there!

We are packing. We are getting ready for the things to come with E Clinic. No more TPN and finally Kayla's central line being removed. This signifies so much. Not only the daily care it requires, but the assumption that they will not be needing to access it any time soon (or ever!) We go back to the needle pokes for check-ups which Kayla says are no big deal at all. She laughs at those now. So do I for that matter. I laugh at so much. Ear infections. Colds. Flu's. Lice. Tubes. Adenoids being removed. Sedation. I laugh at it all. It's NOTHING. It's a walk in the park. A day off. No, it's a vacation!

Meanwhile, at school..... Anthony made friends with some pretty Colombian girls that just arrived at St. Jude for their little boy/nephew's Leukemia treatment. They LOVED Anthony and he was NOT shy.  He had just met these girls. I'm not sure why it still surprises me how outgoing he is.  Aj had the girl on the right cover his eyes while he did a puzzle and then he covered hers. Ahhhh. This boy is too much! Watch out Kindergarten. Here comes Anthony!!!!!!

 "OK, your turn!" They loved him. He especially LOVED them when they said "Good-Bye Hulk" in that cute accent when they left. (yes, that's his new name this week)

The upside to Cancer? Day +9

What a day! Wow... My head is whirling in so many directions.  Today has probably been one of the funnest days in our life. How is that possible when we are here? Battling. Who knew?! You aren't supposed to have fun days when you are going through cancer. You aren't supposed to be laughing and playing or listening to live music, right? You certainly aren't supposed to be out doing all of these fun things while dear friends are stuck in the Med Room because their daughter had a bad reaction to platelets and is covered from head to toe in hives. You also aren't supposed to enjoy yourself while friends are holding their babies while they fight through high fevers, rashes, oxygen rates spiking and plummeting because they are going through a very risky transplant. For sure, there were times today when during these fun moments I found myself staring into space thinking of them and how it doesn't quite feel right having fun when I know they can't be out.  For sure, I teared up during Jordin's song titled "Faith" thinking of all we have been through and all that friends are still going through. I will miss it here....

Ok, so maybe I wasn't entitled to fun, but Kayla and Anthony are. That in itself gives me peace about it all. Our day started out with a private concert from Jordan Sparks. We were second in line to get in and got wonderful seats. Second row. Center. Probably the only time we will ever get seats like that! What a beautiful girl inside and out! Just so sweet. So Real. Kayla had been looking forward to this as soon as she heard who the artist would be. I made sure to get up early to "bet the crowd" and get her the best seat I could. What I didn't expect was for her to fall asleep near the end! Just as Kayla was nodding off in her dads arms trying to fight through some tummy pain, Jordin waved to her. It was so sweet. We can't wait to go and see her movie Sparkle when it comes out in August. You can't help but feel like she is a friend when you go to one of her shows. She is great at connecting to her audience. Anyway, she has a very special place in my heart now for coming here and doing this for these kids!

 The stage is set and the red carpet rolled out. We are excited!

 Yes, she's dancing! You know how this kid loves to groove... SO excited waiting for the show!

 Miss Jordin Sparks! Look at our seats!! :)

After the show, we enjoyed a nice lunch hosted by Corky's BBQ  and headed back to the Target House to rest up before the big party. I wasn't sure how all of the kids would all handle it outside because it was SO hot out, but by the time 5:00 hit, the sun started to get lower and a nice breeze started up. Kayla's spirits were high, so we went out to enjoy ourselves. After watching the preparations for days here, it was so much fun to sit and admire all of the hard work that went in to creating the magic of tonight. Pinwheel flowers were on every table and all over the hill. Everything shined. What made it even better was seeing the smiles on everyone's faces. Clearly, everyone was enjoying themselves. I watched and laughed as the kids had fun taking turns at the dunk tank. It's not every day that you get to take turns dunking pro-athletes.  It was great to see everyone just having a good time! Music played outside. There were huge bins for tie-dying shirts. A volley ball net was a hit complete with an array of brightly colored beach balls. Scott Hamilton and his sweet and beautiful wife, Tracie were also mingling. The Hamilton's were the incredible donors of two of our favorite rooms here at Target House. The Craft room... you KNOW how much Kayla and Anthony love it in there! And also the Gym which Mom and Dad have appreciated so so much! Just more wonderful, beautiful, down to earth people we are proud to call friends!  I can not say enough about what today meant to us. We have just been so blessed to be here surrounded by so many wonderful families going through the same things as us. It's not fair, no. But, we continue to take the positive route. Smiling as we go. Crying when we need to. Laughing and tickling our crazy kids. Forcing them to hug and love on each other whenever we can. It's not the year we envisioned, but I still feel blessed. Life is what you make of it.... so make it GOOD. Surround yourself with people who keep you lifted and you will feel blessed too. 

 Look at this peanut! She is eating. Trying SO hard to get off of this TPN. I am soooo proud of her!

 Who can't stop to watch this kid dance? I LOVE that she doesn't give a hoot who's watching!

 Ice Cream for dinner? Only at St. Jude! Yes, please!

 Kayla and Marcus (Angiel's brother)

 Kayla and Angiel. We will MISS each other so much.

 Brought together by chance. Bonded by choice. Angiel will have her second surgery on Monday. Please share your good thoughts/vibes/prayers with her!!!!

Two of the coolest, most down to earth people we have had the pleasure of meeting here. Scott and Tracie Hamilton! Love you guys <3  Thank you for ALL you have given to these kids. You guys ROCK!

Day +8

Preparations are being made for St. Jude's 50th Anniversary. Huge white tents have been set up around the hospital. Back at the Target Houses, the crews have been non-stop literally scrubbing the houses and grounds from top to bottom. All of the tables and chairs have been sanded and re-stained. New flowers have been planted and are literally everywhere. It's just beautiful here right now! We feel like it's just so appropriate that we will get to enjoy this HUGE celebration. Not only because we are so grateful to be here, but it couldn't be better timing!

Tomorrow morning, we will get to the hospital very early for OT and Kayla's GCSF. The schedulers have been kind enough to schedule our appointments around the concert. Yes, you read it right! To start off the 50th Anniversary Celebration, Jordan Sparks will be performing for us all! How fun, right? Kayla is SO excited. She loves her music. I am hoping to get there as early as I can to grab us some good seats. I am thrilled for Kayla  because she truly deserves this experience so much.

Today, we had a very long day at the hospital.  Basically it was a lot of waiting around as it was determined that Kayla would need Blood and Platelets again today in addition to her GCSF.  The wait time just to get the first bag of platelets hung was more then two hours. So, while Denny was at the other side of the hospital donating his, we were in room 26 in the Med Room watching the bag slowly drip. drip. drip.  It's too bad that we can't be direct donors.  Kayla asked the nurses if she could please get her dad's blood "because she knows it's healthy and that he has a big appetite". We all laughed.  She is making a huge effort to try and eat now which is fantastic!  She is really trying and we are very proud. Tomorrow is most likely her last bag of lipids, so we need her to really amp up that appetite quickly. This morning she was so excited about it. Tonight, her enthusiasm has lessened.

 Waiting for the platelets to drip. That's them in the yellow bag.

 My view for 5+ hours today

Watching a movie and eating pudding in the Med Room. Like the Henna Tattoo? This boy knows how to steal a momma's heart!

 Almost finished. Time for Blood now. Only 2 more hours!

Anthony whipped himself with the tail of a rubber snake (after I told him 1,000 times he could hurt his eye) and so off he ran to have someone from child life make him an eye patch! He is too much!

 Drip. Drop. Drip. Drop. Thank you to the donor for making my baby feel so much better!

Back at the Target House, the Dunk Tank is in place. There will be professional athletes sitting in there tomorrow night! That should be FUN. 

There is a mini volleyball net set up and there are pinwheels everywhere! I hear they aren't even close to finished decorating. I'm telling you, the 50th anniversary of St. Jude is no joke! Glad we get to be here for it.... you know. If we have to.

Tonight, when we finally returned at 6pm from the hospital, Kayla had a very special surprise waiting for her. A beautiful handmade butterfly... it is the sweetest thing. Alli, Kayla loves it. Thank you! Alli has started a foundation called  Butterflies For Courageous Kids .  I think it is so amazing all of the special things that people have done like this after going through this battle or knowing someone who has. Also, there is Project Maisie Hugs and you just recently saw Kayla's JOY when she received one of the Joy Jars from Jessie Rees Foundation where kids battling are encouraged to NEGU (Never. Ever. Give. Up.)  Last, I have added a picture of Kayla enjoying her Netbook that she got from Keep Kids Connected which was started by a now 16 year old cancer survivor named Caitlyn who was diagnosed at 13 yrs old. She was given a Netbook and found that being connected with her friends or family that couldn't be there during her treatment was what made it more bearable.

 Look at how pretty this is! See Kayla proudly displaying her legacy beads in the middle? Love it!

Here is Kayla with her Maisie Doll... and of course, she wanted a picture of Meow-Meow in it! She misses him so much!!

 Kayla with her Joy Jar :)

 Kayla having fun on her Netbook! She LOVES to Skype.

I completely understand how these wonderful foundations or non-profits are started out of LOVE and the desire to spread hope to all of the courageous warriors out there. I haven't figured out yet where all of this will lead me, but I do know that I am for sure spreading the need for awareness. If you or someone you know is battling, please look into these wonderful foundations. People are so GOOD.

Day +5 Breathing deeper

What a difference a day makes! We aren't sure if it was adjusting the TPN pump or if it was the Blood & Platelets Kayla got yesterday, but whatever it is... THANK GOODNESS. She was like a whole new kid today. Denny and I held our breath last night as we went to sleep surprised that she hadn't been up once getting sick.  Before we knew it the day was almost over and we could just happily accept that the worst of it was behind her. Of course, I am knocking on wood. Tomorrow, Kayla gets her very last tiny dose of chemo in the Med Room. It's the same as the other 3 rounds. She gets Vincristine on day +6. So, after tomorrow we can truly say we are finished with that. We hope tomorrow Kayla doesn't even notice she is getting it and will continue to feel good.

As soon as Kayla got back from the hospital today she announced to my surprise, "I'm starving!" Well, yes, I bet you are! I would have made anything. But I made what she requested. Cheese and crackers in every way I could.... happily. I told her that every time she eats it motivates me in so many ways. I have to keep reminding her of her power. She seems to like that a lot!

 Nibble, Kayla, Nibble!!!

 She ate two whole crackers!!!

Tonight they had dinner at the Target House with Karaoke and face painting.  Kayla dazzled us all and made the whole room smile as she grooved to the beats. It makes my heart soar watching her. Without a care in the world. We have always told her what a great dancer is... she just knows that every time she gets into it, anyone within distance is smiling and grooving along with her. They took a bunch of pictures of her dancing away, so maybe they will show up on the SJ website. Who knows. We sure had fun watching her though. Whenever I see this, I know she is feeling better! :)

Earlier today, I was in the gym on the treadmill. I noticed Kayla eyeballing me. I asked her to sit in front of me for motivation. She happily did and man did it help! Sweat dripped off of me and I saw a smile form by way of a raised eyebrow.  When I finished, I told her, "that was for you".  I have decided when we get back, I want to blow up pictures of all of the kids here that we love that are fighting to keep us motivated. I am not kidding, it works! So, if you find yourself needing that extra push, keep this picture in your mind or print it out.

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!