Saturday, January 28, 2012

A party for Kayla! Who's Going?

So, our friends back home have been working night and day on creating a fun and incredible night to honor Kayla (and raise some money to help us... thank you!!!!)  Just in case you live locally and want to go, but aren't on facebook or aware yet, we wanted to share the upcoming event details. We want all of you who support Kayla to be able to go to this amazing and memorable event.

I am told tickets are going fast, so I wanted to post this on the blog to get it out to you... the true supporters in this journey. I still find myself speechless. I can just say, this is going to be a night to remember. THANK YOU to everyone who is selflessly putting our family in your forethoughts day after day. It means the world to us to know we have such amazing friends at home rooting us on!

We love you ALL!!!!  As of right now, I am told, there are 36 tickets available. (posted at 9pm Sat)
 I have been working on a special presentation. It is very dear to me. I can't wait for you all to see it!!!

Here is the direct link for tickets:

January 28th, 2012

Every day at around 4pm this man comes out from behind his desk to go and feed the squirrels. It's hysterical! He is like Snow White out there!!! He brings out this huge white plastic bag from the trunk of his car and throws what looks like chunks of bread out. I am not exaggerating when I say that about 20 squirrels come running out of everywhere and get within about a foot or two of him. It's the sweetest thing. You can tell this has been a tradition of his since way before we ever got here. 

Today I went to a couple of stores to gather boxes for when we are ready to pack up and get our things into storage. I drove around some streets that I hadn't had a chance to familiarize myself with yet. There are so many places we have yet to explore here. I can tell you one thing, the best gift I have gotten is this rental car!!! This is not a town you can easily (or safely) just walk to places in. I am not sure yet what my car situation will be for the next brutally long leg of this. So, I decided I better take advantage of having a ride that will take me anywhere and stocked up on cleaning supplies, garbage bags and other necessities for when we return. They will be safely stored here underneath Target House 2. 

While I organized and cleaned here, Den and the kids went over to the art room for a lesson. It was nice to have some peace and quiet so I could gather my thoughts and build my strength. The past week has been particularly tough for me emotionally. I had a hard time staying positive and found myself in a state of shock and panic over the uncertainty of this whole situation's future outcome.  I think the hardest thing on any of us is that there are no guarantees about the long term.  If a person going through treatment could be guaranteed that after all is said and done that you would be free of worry, it would be so easy! You would breeze through the blisters, mouth sores, muscle aches, sedations, surgeries, nausea, and all of the other horrific side effects with ease. You would know that there is a reason for all of this. Unfortunately, we won't ever know. It's something that keeps me up at night. So, that is why I have been down. Shear fear. I do know that my little girl will keep fighting. We will all keep fighting right along side of her. I will pray and fight for a CURE. We are realizing why the search for a cure is even more important then finding what causes it. There are just too many unknown factors to ever pinpoint it. What we need is a cure. What we need is funding for research... pediatric research especially. 

Here is a picture of Kayla and Miss Ashley from OT. One of our favorites here at St. Jude. She is determined to find something to keep working on with Kayla so we can come and see her lots when we come back. Her neck is doing fantastic, but we will find something! ;)

Kayla is holding up their latest art project. Melting plastic beads to make a replica of meow meow. It was a good thing Meow only has 3 legs... they ran out of white plastic beads! See? Sometimes even strange things are for a reason.

For now, I am going to focus on the fact that soon we will all be home on our much needed break. I get to drive up my hill. Walk down my steps. Flop onto my own bed. And just cry into my own tissues if I need to! Tonight when you lay down on your own beds thank God that you can. Then say a prayer for those of us who wish we could. Just take a second to remind yourself how lucky you are :) 

 Fishing at the Children's Museum of Memphis

Such a cool place!

Tonight, Kayla and I met a little girl, Angel (she is 10) and her mom. They are from Mobile, Alabama. They have been here since May and will most likely be here through the summer. SO sweet. Kayla and Angel had fun playing on the computer together. We might get together for Pizza tomorrow night. Kayla and Angel's eyes lit up! They can motivate each other to eat. Angel is having the same struggle with her appetite.  

Thursday, January 26, 2012

Magic peas and smelly milk!

Today Kayla craved peas. She just wanted them. No explanation. You crave and you shall receive little miss. Drenched in butter. :) (notice the milk shake next to her.. aka scandi shake that alone is 600 calories... tee hee)

ok Kayla.... we're cooking them..............!!! Coming right up.........

Yay! I'll just sit here on my cozy heating pad.

Wait...... not sure if I can do this! You cooked them and seasoned them exactly as I directed

Oh gosh. I AM asking a LOT. hahaha

And we do a ridiculous dance for the peas to go down........

Whatever!  It worked!!!! Tonight Kayla got down a whole bowl of peas. Half of a hawaiian roll. One pizza roll. 1/2 of a red apple w/ one scoop of peanut butter. She said that she prayed to God 3 times today over her wanting to gain lbs. God love her!

She did it!!! We all did the happy dance when she finished the last bite! Anthony still doesn't understand why she gets to "pick" her own dinner. Sorry Aj. You won't ever understand that at 4.

It was so funny. Tonight Kayla thought she wanted milk. When she smelled it she thought it smelled like spinach. She gagged. So then of course when Anthony asked for it, he thought it smelled bad and wouldn't drink it.  I explained to Kayla (very seriously and very irritatedly that I am NOT working) Remember?? Ok. So smell again and tell your brother that his milk is FINE. She totally understood. Walked around to his side of the table. She held in her want to grimace and said, "Anthony, your lucky. YOUR milk smells normal". He still put up a fight! But over a few rounds of this I saw his fear diminish and his belief in his sister and her senses return. He really trusts her! I pointed this out to her and now it is HER mission to keep her brother healthy.

It was hard watching Kayla go from sitting, to standing, to sitting on her knees while she ate. Her bones on her bottom are jutting out so much that she doesn't have much cushion. She can't sit on hard surfaces for a long period of time before she is in so much pain and has to switch positions. She hates it. We point it out to her.... why she feels that pain.  Her back hurts after radiation for the same reason. I am convinced it's not the radiation itself but laying on a hard table. Those backbones are BARE. There isn't much cushion there at all to support her weight. All be it tiny.  So, now she is again put into a big sister status. Not a sick person... but BIG SIS. I hope this frame of mind continues. Her being strong affects HIM. And that meant a lot to her tonight. I did a lot of secret whispers in her ear to get her to acknowledge how her presence is affecting him. She gets it. He is aware of her and how she is more sensitive. He will hopefully, in turn, be a bit more gentle. Kayla will hopefully, in turn, be a bit tougher!

Time will tell...........

Wednesday, January 25, 2012

Mail Update

As our treatments begin to wind down (only 4 more!!!), I was reminded today to put out a little blog post about incoming mail. After today, I wouldn't trust it to get to us here.  The mail has been very slow!

Once we return back to Memphis to continue treatment, we will again start our journey for the first few days at the Grizzly house where we don't have a mail box. Then, we will get settled into our new room at the Target House which will have a totally new address. Once we have it, I'll post details.

We had a nice day today. We got to hang with our new friends and watch a movie. Unfortunately the wiring is not working anywhere in Target 1 (they are working on it) so we didn't get to watch it in the Amy Grant room on the big TV. We will have to have our do-over once we all get back for our 2nd phase. We headed on over to the Art Room to make some crafts. Kayla made two awesome paintings which will be at the fundraiser. She is very proud of them. So are we :)

Tuesday, January 24, 2012

Tornados and Calories

What a busy couple of days! We had a tornado warning the other night which was kind of fun. The lightning was so pretty! At about 10:30pm we had to wake Anthony and Kayla because they evacuated us down into the lobby to wait for it to pass. It was so sad seeing all of these sweet kids having to be woken up and dragged down the stairwells. We are on the 5th floor.. the "penthouse" if you will. The mom across the hall is here alone with her son who just had a bone marrow transplant. He was having a real hard time walking so the sweet mom had to carry him... allllll the way down. I thought she might fall so I stayed with her the whole time. I just couldn't leave her. Denny ran off ahead with Kayla who is light as a feather which will lead me to my next update.   (all ended well on the tornado front... obviously!)

This is the sky ALL lit up. I wish I could have caught it in action... it was awesome! Normally it is pitch black out there.

Ok, so now... our constant fight for the battle of the bulge with Kayla. I think I might be winning this battle. I didn't even realize that I had been in on the game. It's not pretty.  Last week we were so happy when Kayla gained an ounce. This week we were devastated that she lost a pound!  It is so hard to see. I feel like she could just blow away in a heavy wind. I broke down in tears yesterday explaining to her how important it is to EAT! That food is her fuel. Like gas for a car. As worried as her team of docs are here, they aren't going to do anything drastic as far as TPN or an NG tube because we are going home soon and they are hoping that will be the BEST medicine. AMEN to that!!!  Last night she had a scoop of peanut butter and ice cream for dinner and one bite of a banana. Whatever she will put down at this point. Poor Anthony does not understand why he can't have the same things for dinner. I don't blame him!!
                Explaining to Anthony why he can't have donuts and ice cream for dinner.... FUN! ;)

Every Ounce Counts

Reality. I showed Kayla this picture and she gagged. She said she hates seeing her bones. New strategy. Bluntly honest. I will show her this pic every time I need to BEG her to eat. This photo is why it took me so long to post my new update. This was a hard reality for me to swallow. Please pray that she eats... and eats...... AND EATS!!!! 

Denny continues to knit. 

On a positive note... because you KNOW I have to share the good, bad and ugly: we are making friends! Kayla said her highlight of the day was getting to play with Ella! They kicked the soccer ball around outside and giggled and played. I am SO happy!!!!! 

They are the same age and grade. This is the best picture I have seen of Kayla in a LONG time. Proof that laughter and FUN are the best medicine!!!! 
ps. Notice the new dangle earrings? That would be from the lady at the front desk of check in that kayla was bugging about her jewelry. She made a point to find Kayla today to deliver her promised dangles. Love love LOVE!!!! SO sweet :)

Anthony is newfound friends with a sweet 4 year old boy named Connor. He is about a week ahead of Kayla in treatment. He has ATRT. A very rare and aggressive form of "the C word". Please keep Laurie, Mike, Connor and Kyle in your prayers. Connor's Caring Bridge Site . They get to go home on their "break" Thursday. We will arrive back here around the same time and start our Chemo around the same time. We are on the same protocol. We are hoping Kayla meets a new friend like Ella (because Ella will be finished with her treatment soon). Friendship is such good medicine! Until then, Kayla can hang with Anthony and Connor.  I am happy to have a mommy to chat with and who we will SADLY be going through this with. Hopefully once some nice weather hits we can have family dinners and LOTS of play time outside. So, today was a GOOD day filled with friendship. Just one more "gift".  

Good night all. Thank you for the prayers!

Sunday, January 22, 2012

Awareness and Our Silver Lining

Did you know that the gold ribbon is the symbol for Pediatric Cancer? (grey is for brain cancer). I think we all know the pink one is for breast cancer. There is a reason for this. Funding. I always just assumed all cancer research was funded equally. I never thought to look into it. I never had a more personal reason to care... until now. 

Unacceptable Statistics:

The National Cancer Institute's budget is 4.6 billion dollars. 

Breast cancer research receives 12%, prostate cancer 7%, and all major pediatric cancers combined receive less than 3%!

It is estimated that approximately $1 billion in research is needed to develop a new drug/cure for each of the 12 most common pediatric subtypes. Childhood cancer as a whole receives about $130 million/year in funding. At that rate, it will take 100 years to develop these drugs and 250,000 children will die.

Childhood cancer research is woefully underfunded compared to adult cancers. For every six research dollars per patient with AIDS and every one research dollar per patient with breast cancer, a child with cancer receives only 30 cents.

Every day 9 children in the US are diagnosed with a brain tumor.  Brain tumors are the leading cause of cancer death from childhood cancer. There are more than 120 different types of brain tumors, making effective treatment very complicated.

At this time, brain cancer research is hugely underfunded and 
of the magnitude of this disease.

Tell people what you know about Pediatric Cancer. Maybe one day this ribbon will be as recognized as the pink ribbon and no other children will have to endure this.


There are so many thoughts going through my mind right now that I am drawn to my computer. I need to write them down and sort them out.

Positives to take away from this situation:

Community support! We never expected things to be at the level that they have come to.  The community outreach, fundraisers, Love & support from our congregation, volunteers, Dine and Donates, bake sales, meals, prayers, cards, thoughtfulness, selflessness are all above and beyond anything we could have ever imagined. Our community has all taken us under their wings and shown us a love and sense of spirit that we can never forget.  You all have helped hold us up on the toughest of days. You give us strength to fight the fight as a family which cannot be valued enough.

We caught it early! Statistically, 80% of all pediatric cancer isn't detected until it's already in stage 3 or 4. I know my child and I have the support of an amazing pediatrician who never underestimates the power behind mothers intuition. Dr. Yamaguchi, THANK YOU again for listening to me and going along with my gut feeling. You have helped to give Kayla a great chance in this long long battle. 

Having a surgeon so skilled, that he was able to fully remove the tumor. It was only 1/4 of an inch or less away from her brain stem. You can imagine the skill that was required. We feel fortunate there to have had the connection to get us in with Dr. Gupta. Thank you Patty! and Thank you Dr. G. 

The awareness this experience has given us into the world of pediatric cancer. The people and families involved from those that work for St. Jude and those being treated here. Everyone involved is amazing and will be sorely missed when we leave this place. That is a feeling I never expected. Bittersweet. NOT sad that my baby will be finishing Radiation, but sad because we have made some amazing friends there. We will truly miss their kindness, humor, and love in one of the toughest situations anyone can go through. 

Our families ability to be together during all of this is of the utmost importance. We are one and draw our strengths as well as cover each others weaknesses to form a spirit that cannot be shaken or broken. This cannot be taken for granted as it is the most important aspect of all. Love will get us through it. Faith will get us through it. God will get us through it. 

Kayla's strength. The courage she has to stay strong during all of the pokes, pricks, sedations, physical therapy,  and bandage changes. Watching her miss her friends. The pain she is now feeling realizing just how long we will be here. The amazing amount of understanding she has to this horrific situation to which she has been dealt.  Watching her eyes and expressions as she learns about cells, chemo, beams of invisible light hitting her brain and spine. Catching her expression when we explained that some people are here again. That this isn't their first battle against cancer. Watching as she pulls out clumps of hair. Seeing her noticing the tiny dots that have been tattoo'd onto her body. Giving her anti nausea medication 3 times a day, everyday. Watching as our medicine cabinet becomes full. Even when the days are long and she is exhausted, she still tries her best to continue to fight hard.  She says her prayers every night. She continues to keep us all strong.

Saturday, January 21, 2012

Anyone local want a shirt?

Thanks to our very dear friend Mark Fujiwara, there will be discounted shirts available for our local friends and the amazing supporters for our lil' Kayla.  See Mark's message below. Orders need to be in by the 27th.

*Mark said that he does a happy dance every time he gets an email for an order. What a friend, right? Now Mark, we couldn't ask yesterday on your birthday, but Denny REALLY wants a video of this dance! We love you guys! Thank you for all the support and love....

Hello Friends,

My name is Mark Fujiwara. I'm a friend and a huge fan of Kayla and her family.  I am also the proud owner of a Curing Kayla Rose shirt. I would love to see even more people wearing these shirts all over our town.  
Feel free to email me your order directly with the quantity and sizes that your family and friends would want.  Please use the information on the attachment.  I will bring them to the fundraiser or will deliver to your house or school. Orders need to be in by January 27th. You can pay me when you receive your shirts. 

Thank you for all of your help and support.  

Questions, please email or call 916-606-3072.

Mark Fujiwara

Friday, January 20, 2012

Do's and Don'ts

Day 24. Week 6 complete.

This is Chance. He is one of our very favorite faces down in radiation. As much as we will not miss radiation, we will miss him and some of our friends that we have made here.

In the background, you can see Aaron, one of the awesome volunteers,  in the child life room drawing with Anthony. He has SUCH a talent. Last week, Kayla requested that he draw Scrat from Ice Age. Aaron made good on his promise today. (We ran out of time last Fri. since without sedation Kayla is in and out so much quicker!) Here is his promised drawing.... WOW!!
Before Kayla colors more on it, I had to post it! So awesome :)

Aaron inspired us to get creative so we headed over to T2 to spend some time in the Art Room.  There were a few tours going on. I know that it is so important that St. Jude let the public in. Radio stations and a lot of public figures come through to keep the donations rolling in. It's great! I get why they do it. It's just that when you are sitting in the Art room w/ your children minding your p's and q's it's not a very nice or happy feeling watching a woman hang back from the group only to stare into the window with the most pathetic sad face... her lip in a full pout. Really??? I understand you don't understand what it must be like on the other side of that glass... Kayla has no hair. So what! Just because Kayla has no hair, she is STILL the same kid! She doesn't need pity. We don't need pity!  WE ARE FIGHTERS, NOT VICTIMS! As if that weren't enough to drive me a bit batty, one guy who was lagging on the next tour thought it would be a good idea to snap a picture of us... or Kayla. (they do have signs up asking people not to take pictures, but this guy was not being watched)  I am having the hardest time when we get this reaction from people. I am starting to find myself asking Kayla to wear her hat in stores. Not because it's cold, but I don't want her to catch wind of the staring! So far, she doesn't let it bother her. Maybe it's only the protective momma in me. I just find it so beyond rude. I can say that when you have never been in this situation or known someone who is, you don't know how to "react". Some might think that giving a mom a sympathetic frown might make her feel like she isn't alone. Not so much! I appreciate the people who just smile and talk to us as if there was nothing visibly different. I appreciate this more then I ever thought I would. It's an act of kindness greater then a hug even. Just treat us as if we are normal. We are!  I promise. 

Ok, that being said, I thank you for letting me vent about this. I do feel a tiny bit better. So, when you see us in Target soon, no rubbing her head for good luck, ok??? You can rub Denny's though, you may even get his leg going a little bit, ha!....... ;)

Tonight Kayla had a nice healthy meal... breadsticks and pizza! Anthony asked if he ate all of his dinner if he could have dessert. I told him, "this IS dessert"!!! 

          Kayla got her buddy dressing changed. She still hates it. It still requires blankie on her head. 

 We are still working on getting some meat on these bones.....

 We look forward to a time in our life where we can forget the steps to this process and what these bandages and tubes of heparin are for.

Thursday, January 19, 2012

Counting Down

The kids were begging for their favorite dinner... burritos. SO, off to El Toro Loco we went where kids under 5 eat free M-Thurs. (and we need the pice break) We made a deal with Kayla that we would take them, but she had to promise to try and at least eat half of her burrito tonight. Normally, she gets about three bites in and has no room for more. And this is without chips or anything to drink!

Well...... She did it! She ate half of a burrito!!! Hurray!!!!!!!!!!! :) :) :)
Look at AJ. Even he is proud. <3

Tomorrow, Kayla will have her 24th radiation treatment. 7 more to go........... Tick tick tick! We wanna go HOME!!!!!!!!!!!

Wednesday, January 18, 2012

January 18, 2012

We've been busy here doing our daily things. OT, PT, School, Radiation etc.  Meanwhile our friends back home have been fighting just as hard for us to keep our house, pay our medical bills, and allow us to be here as a family to kick cancer in the booty!!! We continue to be amazed by the generosity of people we don't even know. You are all amazing. We can't thank you enough!!!! 

This is a picture from the Epiphany Breakfast this past Saturday at our church in Novato, Good Shepherd Lutheran. Anthony's teacher (and she was Kayla's too!) Mrs. Beckmann had a HUGE hand in getting our flyers and info out to everyone there. (I LOVE the poster... so sweet!) People were so amazing and gracious. God Bless you all!!!!!  Thank you to my amazing friend, Thalia and her daughter Megan for posing and showing us the love from home. Megan and Kayla have been friends since 2! We miss you so much!!! HUGS!

People and KIDS have been so incredibly supportive! From Mrs. Weiser's amazing Kindergarten class buying pins and donating to us... 

Two gracious moms at Lu Sutton created Coins for Kayla and asked the kids to find loose change at home. The bucket was SO full that one of the dad's could barely carry it out! Every single kid at Lu Sutton participated.  Thank you so much!!!!!!!  

We are very honest with Kayla and tell her all the kind thinks people are doing to ensure we keep a roof over our head and for us to all be here together as a family. She sees me tearing up over it all the time. Kayla is already coming up with creative ways to try and give back.  She is just like us... already wanting to find ways to pay back all the love. People are just amazing. I say it all the time, people ARE good!!! Thank you to all of the kids in Kayla's 2nd grade class for all the love! She reads her book that you all made over and over. We loved the video as well. You can imagine how much it means to us and can be such a GREAT distraction on the hard days.

 I forgot to add this. This is Anthony climbing the rock wall at the museum on Monday.

The kids got to make pizzas for lunch. They even give you a chef hat to wear (and take home). Sweet!

Full belly after eating one whole slice of her pizza. It's a good thing it's only $2.49. Next time they share! :) The good news is Kayla gained one whole ounce! Yes, every ounce counts right now...

Photo compliments of the 4 yr old!

After a long day, it's time to come home and relax. Kayla got her dressing changed. She continues to hate having this done. She despises the stinging and seeing the stitches. She puts her blankie on her head until it's all over. There is a lot of deep breathing involved. She told me it won't end until they are out! (and that will be once Chemo is over with).

Anthony is requesting a SPECIAL Hello out to his friends in his pre-school class. He LOVED the card you all made for him! Thank you :)

Kayla is teaching Anthony poker. Denny continues to knit. I am still enjoying sharing our journey. Thank you for reading and being here to support us through it all. We are so forever grateful!!!!