One year later.

Wow. I can't believe it's been a year.  When I sit here and think about all that has changed in my life I am flooded with so many emotions.  My heart is filled with so much pride and gratitude.  I am so incredibly proud to still have a loving family intact after all that we have seen.  I know that many families do not make it in the end, so I am very proud that we have actually become stronger. I am grateful for our amazing Kayla Rose family and how lucky we are to have had you all to lean on, share with, and vent to.  I am proud of Denny for being the incredible father and husband he is.  My rock. Always!  I am proud of my St. Jude families for their continued efforts to fight for a cure.  I am especially proud of my friends who have lost their little ones this year. I am so proud of them and how each of them has chosen to honor their warriors. How they still refuse to never give up this exhausting search for a cure so no child ever dies from this horrible disease.

Today is Veterans Day.  Today is a day we honor those who serve our country. Those who put their lives on the line to protect our rights.  I am choosing to also honor a few friends who never got the chance. To honor these special friends who died just trying to live.

Sheyla.

Carter.

Wesson.

Jessie.

Too many friends are still fighting.  No matter what your religious belief, I ask for "prayers".  Please please pray or light a candle for our little friend Matthew who is still fighting very hard. He is so very very sick.

Much needed hugs from my big brother. I missed him so...

Also, please pray for Ryan.  He is 7 and at his very first scan post treatment, they got the horrible news that he had relapsed from Medulloblastoma.  There is no cure now.  He doesn't have long to be with his precious family.

Also, for our other fellow Medullo fighter who has once again relapsed. Please pray that there are more options for his cure.  Sam just began college this year and deserves a long and happy life!

Sam. 

Nevaeh.

Nev just started 6th grade here in Novato.  This amazing girl just went through radiation and is now going through Chemo following three separate brain surgeries. Nevaeh is being treated here locally at UCSF where Kayla had her surgery. These next few weeks of waiting to see if there was any tumor growth are torture for her Grandma who is now raising her and loves her like she is her own. I love this family and this little girl. She remains very strong and positive! Please send good vibes and prayers their way.

Today, one year later, we are celebrating all the blessings we have at this moment. I just feel so grateful to be able to be doing what we should be doing today... Laughing. Smiling. Playing outside. Living.  I have already hugged my kids 100 times today.  I won't stop. Ever. Today, one year later, I am not pacing the floors of my house with my one hand gripping the top of my head while the other is taking and making calls searching for hope and feeling completely helpless. Today I did not hear the words from a neurologist, "you can either go to the emergency room or wait three days until Monday to make and appointment for brain surgery.  Your choice." Today my little girl does not have a tumor in her brain.  One year later I am not in one room sobbing my heart out one minute while in the next minute walking in the other room to face my children with what ever smile I could muster at the time... praying they couldn't see the fear and pain in my eyes.  One year later, we celebrate being alive and all of the blessings this lesson has taught us.

Kayla continues to amaze us with how well she is doing.  Her weight is just about where it was when she first started showing signs of getting sick.  Her cheeks are fuller.  Her skin just radiates health.  She is eating just about what her brother is, which is a HUGE leap from where she was only 4 months ago.  She has had a relatively head-ache free month with little to no nausea.  She is still taking her Zofran morning and night, but luckily that's it!

                                            Kayla and her Nana's dog, Sasha

The kids are in a running club twice a week before school.  (Not that Kayla really needs to be running... but gaining muscle at this point would be great!)  They love it!  Anthony amazes us at his speed.  This week he ran 3 1/4 miles in about 40 mins. Just incredible.

Kayla started Piano lessons last month and is loving it! She had been asking for years if she could play and it was never the right time for one reason or another until now.  Watching her play now makes me so proud.  She really is good! Thank goodness she has loving grandmas who are helping to make this possible right now :)

October crept up on me and was over all a pretty emotional month.  The days leading up to Halloween were tough as the memories from last year flooded through me. The father daughter dance. Trick-or Treating. The change in the weather. Once the holiday was over, I did feel so much relief that we got to have our first official do-over. So much relief that it was not at all like last year. We kept it very low key which turned out to be just what we needed.

               Hotel Transylvania inspired costumes for the father daughter dance

Audrey, Kayla and AJ dressed up as "Marty" from Madagascar 3 and Maggie was a great Dorothy

This month, the new St. Jude commercial titled "bedtime" has started to air on TV.  I don't have a way to share it here on the blog.  I was given a disc by ALSAC but there is no way to share it and it isn't on their website yet. So I hope you all get to see it!  Also, the calendars have been sent out to all of the Partners in Hope members.  Do you know what being a partner in hope is?  It's a pledge of $19  per month that you donate to St. Jude. You can't believe how much this helps.  It costs SJ $1.8 million dollars per day just to operate.  If you are a PIH, you will receive a holiday card (in addition to many other wonderful things).  Just before we left,  Kayla participated in this incredible way to say thank you to all of the donors who make St. Jude run. 

Also, there have been several Kayla sightings at the San Diego airport from our first time working with ALSAC for the Thanks and Giving campaign.  So, if you happen to be traveling, look for her beautiful picture!

Here is a message I have to share with you all that I received from a friend this morning:  "Sending you, Kayla, Denny and AJ a big hug today. What a difference a year makes. Here are the things that have you have taught me: knowledge is power, listen to your body whisper so you never have to hear it scream and I continue to follow your friends and their babies from St. Jude's - I never turn my head even when one earns their wings and it breaks my heart. We owe these families, doctors, nurses and researchers our awareness. We owe Kayla our awareness. For this I only have you to thank. Lots of love - Rachael"

To those of you who have read my words, followed our story and followed these stories without turning your head... thank you! Cheers to a truly NEW year.

Day 5 - Results!

Thank you to all of you who continued to pray, light candles, or do what ever you have done. We got the ALL clear today!!!

Kayla's cuff removal when as smooth as it could have possibly gone. We have a small bandage covering the site for now and will have to keep it dry for 10 days. A small price to pay to have the plastic cuff that resembled calamari finally removed once and for all.  

Luckily, Kayla's lumbar puncture went just as smoothly. It only took one stick and her spinal fluid was CLEAR.  I am so grateful that we can once again exhale. We will be returning back to St. Jude in 3 months to do this all over again.

This is Kayla and I about to head back to the OR. Sleeeeeeepy time! :)

Today, I met one of the most inspirational people ever. Adam Long. It was an honor to meet him and a blessing to tell him in person how incredible I think he is.  If you want to read an incredible article, click on this link:  http://www.stjude.org/the-fighter

Kayla was so inspired by Adam's bravery and positive attitude.  So am I.  So will all of you, I just know it!

Tomorrow we will board a plane and head home. Cancer free for now! Blessed forever. 

One more bit of good news, Denny PASSED his CNA test! He is now officially certified... we are so very proud of him. Way to go!!!!

Day 4

The alarm went off early this morning that's for sure. Kayla's Spinal MRI was scheduled for 6:45am. and yes, we were on time!

I have to say, I am so proud of Kayla. She is just taking all of this with so much pride and grace. She continues her eagerness to please every person she encounters and is just such a joy to all who get to have her as a patient. I am told over and over how well she did and how much they love her.  Of course I love her, but I'm her mom! It's so sweet to hear people reassure me that she is indeed special. Not just in her momma's eyes. God, I love her!

The only real news I have to share from today is that there was ZERO change in her audiology exam. She still has the exact same "minor" high pitch hearing loss in one ear. We are all thrilled that this has remained stable.

Kayla does experience frequent ringing in her ears. Here she is learning about how and why that happens.

Look at this audiology equipment

I can't believe I am admitting this in writing... I allowed Kayla to play hooky today on psychology.  She was so upset about having to go for another 3 hours today. ( I think I forgot to mention she did 3 hours yesterday?? )  I would insist on it if it gave her coping skills for life after treatment, but for whatever reason, it does not.  It's more about how we act as a family.  For example:  "When we argue, do we throw things?" "How often do we do outside activities as a family?" etc.  Also math questions? Ugh. So frustrating. How does SJ miss the mark on this one??? I guess they need this for their research, but I strongly feel this just does not pertain to us as a family.  I wish they did offer coping skills though. THAT we all could use.  So, I did. I let her bail.  Call after call I ignored. I know... BAD mommy. But she needed and wanted a break. I happily gave her one! Instead, we headed on over to Mud Island to enjoy the gorgeous weather. We got out and walked all around. It was a lovely break in the day!  Now that is psychology. ;)  

                                    Enjoying the sunshine at a park we found on Mud Island

Now, here is something to make you chuckle (or for some of you, cry).  I finally got to take a picture of the Memphis Recycling Center.  Yes, this is it. I promised a few people I would try and take a picture.  Here you go! (the top of these huge trash bins read "Recycle Memphis")  Crazy, huh?!

Tomorrow Kayla will have her two final procedures before we meet with her Oncologist, Dr. Gajjar.  At 8:30 Kayla will get her "sleepy medicine" happily and be wheeled away for a painful Lumbar Puncture. Ouch! This will make sure that there is no change and that her spinal fluid is still free of any nasty cancer cells.  While she is sedated she will also have the cuff from her old double lumen line removed. The docs have agreed that the skin is not heeling over it the way it should have so it must come out.  We are all happy about this being OUT of her body once and for all. Some hospitals remove it, some leave it in. To me, it is a plastic foreign object and should not be left in. Kayla's body agrees with momma on this one.   So, while she is asleep, the plastic will be pulled away from the skin where it has attached and she will be carefully closed and let to heal... finally!  We look forward to that!  

Tomorrow is also a very big day for someone else. Denny will be taking his CNA certification test. It will last all day and he will get results immediately when it is over.  I just know he will knock this out of the park. He is a rockstar.... just like Kayla. :)

I promise to post news as soon as we know anything.  Thank you so much for all the love, prayers and constant support you show us.  It means so very much!!! 

Love, from Memphis

Day 3

So, today we had a little bit of an unexpected occurrence. It's not a huge deal... but if you know Kayla, it was kind of a huge deal.  No one informed us that we would be getting an IV while here for check ups. Needle poke? Yes. And she proved to be a trooper! But this was a shock. I don't ask many questions or doubt much from the medical team here, but usually they give us the heads up. Believe me, I will make sure I know what to expect for all future visits from here on out. Kayla does not do well with the unexpected. We were blind sided, but there was no way around this IV.  Today, Kayla's MRI was a contrast MRI. Duh. Of course it was. It's the most through and accurate. Of course she needed an IV for that! Now I know.... Sorry Kayla! ;)

All appointments went well. She even gained a few ounces from yesterday. Memphis eating has been good on her! (not me or Nana though!)  Kayla scored very high during her psychology review.  We ended the day at 3 pieces of cake. Not me! Kayla!!! Yep, you read that correctly. THREE pieces of cake. Carrot is her new fav. At least she got some veggies in there, right?

Nothing like a little cake to take the pain away. Love her!!!

I'm just a little unsure as to how she is going to sleep with her arm so darn stiff...... 

This does NOT look comfortable at all.

The clouds cleared away over night and we were left with bright sunny skies and perfect weather all day long. Too bad we didn't really get outside much to enjoy the glory of it today.  Tomorrow we start at 6:30am for the Spinal MRI. Eeeek. We are getting closer and closer.  No new updates on Matthew today, but I thank you to all of you sending loving thoughts and prayers their way right now.  Today was Wesson's memorial service. It was a hard morning here as I couldn't get my friends Kristi and Logan off my mind. I just miss seeing them here.... It's .... just not ok. :(

A perfect example of "not ok". How do you go from this one day... to this just days later? Oh. That's right. Cancer. The first pic is my favorite of Matthew and his daddy. He is fighting for his life as you read this. Please please send love and prayers their way. Please?! Aimee & Ron, we will never stop hoping... ever. Love you guys!

Wesson, you will NEVER be forgotten.  It was not the cancer that took him. It was the treatment ....  RIP buddy!  We need a cure..... yesterday.   

I know this is hard to read. Hard to look at. Imagine being their parents.  Cure. Cure. CURE! Thank you to those of you who help us fight and spread awareness. Love all of you!

Day 2. Check!

Day 2. I forgot how long and draining the days here at St. Jude can be. Maybe the lack of sleep in 3 days has helped contribute to that feeling also. Even still, it was a long, long day.  The rain continued to fall here in Memphis and was really carrying on this morning as we sleepily walked down the overly-lit hallway to the elevator in the Grizzly House. We arrived at 7:20am for the start of tests with our visit to A/T for labs. Kayla was a complete trooper and didn't even wince at the needle poke. We all laughed when she didn't even feel it. Gotta love those J-Tips. (almost an instant numbing agent for just before needle pokes)  We rejoiced over the 3 ounces she has gained since leaving in July. Yes, you heard me right. Ounces. So, this just goes to show how much weight she initially lost once going off of her TPN/Lipids.  It is taking time for the food to stick to those bones, but by golly it is finally starting to really stick! I don't care how slow as long as it's sticking. Not only is she up in weight, she has gained a whole centimeter in height.

Someone has discovered cinnamon pastries. Kinda late to the game? Yes! But, better late then never. Here we are in A/T. Those are the vials getting ready to be filled w/ Kayla's beautiful blood.

Kayla and I had a fun time showing Nana the grounds of the Hospital and the Chili Care Center.  It really is an incredible hospital.  Nana was constantly saying how everyone is so nice here. Well, almost everyone. As Kayla continued to eat through all of her appointments, the day just couldn't really go any better. We continued to run into old friends and favorite staff members. Kayla had a long check in with Speech Therapy.  She ranked off the charts landing at a combined score of 99% (which they rarely if ever see in patients let alone any kids her age acheive.  This test is an average between all kids, healthy and not) GO KAYLA GO! She was ranking in at the level of a high school level teen. We have been joking with her all night when she asks us silly questions wondering what happened to our genius kid. haha! We got the "All Clear" to not check back in at speech for a year.  They do want to continue to monitor her and note any change. We expect little to no decline in her progression.

 Lunch time! Finally, able to enjoy all of their amazing food! Eat Kayla, EAT! :)

Eating Chocolate Cake while testing in Speech Therapy. Eating her way through St. Jude. I LOVE it!

Finally, we made it over to Lauren in Physical Therapy for our check in. Ahhh. Oh how we LOVE PT. Seriously, it is the coolest area. It's always like a breath of fresh air to see these amazing therapists work their magic on these kids. Again, Lauren was blown away at how wonderful Kayla looks and how well she is doing. I constantly got the thumbs up and she just kept shaking her head in awe at what a difference "this" kayla is compared to the last time she was here. It was like music to momma's ears! Again, all was great and we were cleared until the next check up in January.  Kayla was encouraged to continue working on building muscle since muscle does weigh more than fat! ;)

Last, we went over to The MRI department so we could wait to be called back for the first of 3 MRI's on this visit.  Today was Kayla's Functional MRI.  I walked back with her and helped her dress in a gown. We met with one of the doctors who again went over the test and how it all works. We did some practice tests so Kayla would know exactly what to expect. They use these MRI's for a lot of their research here.  Again, she did fantastic scoring perfectly.  GO KAYLA GO!  

The day would not be complete without going up to the BMT floor (where Kayla had her 4 rounds of chemo). We had to get a hug from Miss. Teresa and Dr. Shook.  It was SO good to see them both. It has been a VERY hard week on that floor.  Our friend Wesson devastatingly earned his angel wings and his buddy Matthew is fighting tooth and nail to not follow wesson's baby foot prints up to the beautiful light.  It was clear that some good news was needed right now.  I can imagine not many people stop back up there to visit and see them when they are here on the other side of the glass. I realize that it's important for us to remind these amazing doctors that they ARE saving lives too. That miracles do happen and that kids can leave, come back to visit, leave, and continue this pattern for years or their entire lives to come. It can and does happen. I know they too need to be lifted. Kayla did that for them today and that made me feel so good that we were able to give them a boost of energy to continue to fight for all of the kids here.  I feel so helpless, but for some reason, I actually felt like maybe it helped a little. If it did, I am so grateful!

Tonight we had a special visit with our friends Damaris, Angiel and her brother Markus.  It was SO nice visiting with them and just having a laid back evening filled with Pizza and giggles. I just wish we had had more time.  We have missed them so very much!  See? We are packing it all in! Lots to do!!!!

Tomorrow Kayla starts the day off with her Brain MRI. This is the one I consider the most important. They all are, but this is the big one. Please send good thoughts, vibes, prayers or whatever positive energy you can that all things remain clear. I am not worried. I know we are in good hands and that life is out of our control. Still, I know that it does help!  On that note, PLEASE do the same for sweet Baby Matthew. He has just endured his second Bone Marrow Transplant and we just don't know how much more his body can handle.  He is in the PICU.  This is their very last option...

Just a little side note (because I have been asked several times now) we will not have ANY results of the MRI's or the Lumbar Puncture until Thursday afternoon when we meet with Kayla's Dr. in E Clinic. I promise to post as soon as I know.

I am hitting the sheets and desperate for a full nights rest! I will update you all tomorrow. G'night!