Thursday, April 26, 2012

Day + 10

It's hot out! That makes us excited because the thought of summer coming means we are closer to finishing treatment.  The gardeners have been very busy around the Target House the past week planting a ton of new flowers and getting the Elephant Water Fountain in the front up and running again. When we arrived in December, the fountains were already turned off for the winter. So, this is the first time we have seen them running.  They are magnificent to see!

Kayla has an MRI of her spine on May 3rd. She then has a sedated MRI of her brain and Lumbar Puncture schedule for May 4th. This is part of the protocol. The doctors look for any changes.

Today, Kayla had PT, School and her usual visit to the Medroom for her GCSF. Tomorrow, we will find out what her counts are at. Yesterday, they were at 100. So, we are on the upswing again! Hooray! Her energy is very good considering. Her nausea is mostly under control. All is as good as it can be. We were told by a nurse who has been in the medroom for years, that she was working there before they gave GCSF shots. She said that it used to take months for the counts to come back on their own. So, one more blessing! :)

I also heard of a girl who lives in Lebanon. She has been a patient since she was very young and is almost 18 now. This special girl has an enzyme deficiency. She is unable to get a transplant to help her. The medicine that she receives is given twice a week and will continue her whole life. Each dose is $250,000.00!!! So, that's 5k per week! St Jude has to have it on hand when she visits here for her check ups. Can you even imagine??? She would not survive without this medicine. I am still amazed by that story.  Like we are all aware, you see and hear it all here at St. Jude. The rarest cases. The miracle stories...

As I love to do, here are some pics from today. 

 Waiting.... we do this a lot!
Kayla at school. Usually there are other kids in the room working with their teachers, but today we had the class to ourselves!  Kayla is getting her one on one time with her teacher. They are working on division, multiplication and grammar.  She still loves school!
Here are some more pictures of inside "school". This is outside of the classroom. They have a cozy area where parents/siblings can wait. I took advantage of the emptiness today to snap a few shots from within. So cool!

 Simple decorations! Easy enough to recreate if you have a craft room.
 Almost 90 degrees. Humid. Loving the fountains!

 With Aj's new haircut, he sure looks ever more like his sissy! Wow. Who's who?

Tuesday, April 24, 2012

Kayla's Birthday & other promised info

As promised, I'm back! :)   Today, Kayla is full of energy! She is a lovely shade of grey thanks to no immune system and Chemo, but doing great! Still fever free. I think the blood transfusion yesterday is the reason for her energy level today. For that, we are thankful!
"Strength does not come from physical capacity, it comes from indomitable will" - Mahatma Gandhi

We got word yesterday that Kayla's next proposed date to start round 3 will be on May 9th, her birthday. If all goes well up until then and nothing holds it back, she will be admitted at 8pm that night. It's actually a blessing I think. Good luck if you will?  What it means above all else is that she will be feeling fantastic on her birthday! For that, I will be eternally grateful. My birthday, Denny's birthday, holidays... they all don't matter in comparison. I have hoped and prayed that for her birthday, we could all spend it feeling the joy and warmth of our "normal" Kayla. My baby girl will be 8. Weather permitting, she has asked that we go to the zoo. So her wish shall be granted unless it's storming out! I can't even describe in words what it means that she will be feeling her best on that day. It's honestly the best gift you can get.  

I asked Kayla what she wants for her birthday this year. She told me nothing. I looked at her twice and she giggled. She said she doesn't want anything except to go home to her meow meow and her house. So first of all, I want to say THANK YOU to those of you who have helped us out by donating b/c with out it, we wouldn't have been able to keep our house.  In response to the messages I have gotten about sweet Kayla's upcoming birthday, I want to add this.  If any of you were hoping to send something that Kayla could use or would like, please consider a donation to St. Jude for her birthday. A cure is something we could use and she would love. It can be a dollar. Every penny goes toward finding cures and saving lives. Donate To St. Jude Here   If you would rather the donation go toward Kayla directly, you can use the paypal link located on the blog. Specify that it is for Kayla's birthday in the notes. We are planning on using those funds to get Kayla a few things that she has asked for when she finally gets to go home! One being a lava lamp... go figure!

The sun is shining. So we are heading out to play while we can.

ps. We got received a package yesterday with a canvas print of the photo I recently took of the kids. I LOVE it. There was no note inclosed (probably company error?) saying who it is from. I just want whoever was sweet enough to send it here know that we LOVE it. Thank you!!!

Monday, April 23, 2012

Life at Zero-Round 2

St. Jude gift shop

It became official yesterday. So sorry I left you all hanging. It's been busy around here. Ok, to recap.

Yesterday Kayla's blood work came back with an ANC of zero. It was surprising because this time around, she felt a LOT better. She had energy, no fever and a sense of humor. See? You just never know what can happen. The Zofran that has been given through her line has been helping tremendously at night! We have not had any vomiting at all. Only a little in the morning. This morning it was just the dry heaves when she thought she was choking on her own mucus. I can't remember now if I mentioned it or not, but we ordered her a wedge for her bed a few days ago. It arrived next day (free!) and has transformed her bed here into a make-shift hospital bed. Not being flat on her back has really helped with the mucus sitting in her throat while she sleeps.

This morning, I sadly dropped Donna off at the airport. She is now safely back home and we all have been missing her dearly. Not missing that phone however that is like an appendage that is constantly running out of a charge, but it does take good pictures! (Wouldn't it be easier to hang a small digital camera around your wrist?)  HAHA. Donna, I love you... I miss you!

 HOW IS THIS TAKEN FROM THE SAME PHONE? Android??? UGH. Donna! Get an iPhone!!! ;)

After I dropped off Donna, I swung by the Target House to pick up the rest of the family to head on over to the hospital. We knew it would be a long day..... and it was! Aside from the normal appointments with A/T (blood work) and B Clinic for a check up with the doctor, we had a lot of magic to be had in the med room.  Today, Kayla received her G-CSF shot, a blood transfusion, Platelets, and Vincristine (Chemo).  Anthony and I headed back to the Target house at about 3:30 on the shuttle because he was going LOONY. Kayla and Den didn't get back here until 7:00pm.  Like I said, way too long of a day.

Taking the shuttle to our "temporary home" He's had his FILL of the hospital for one day. 

We walked, ok, RAN into the Target House and headed out for the playground. Thank goodness there are slides and bikes and friends waiting out there. PHEW.  Anthony quickly found his new friend Keegan and they played for a long time! It was wonderful! While we were out soaking up the sunshine that popped out from behind clouds something touched me. It happens all the time here. I still am not sure how I will ever get used to all the moving moments here that touch me every day. Moments that make you constantly grateful to be alive... There are no words. No words to describe how being here can touch the soul.  We were out watching the boys play and laugh and out walks a young man wearing a mask. He was holding a guitar. His mom was walking with him. He sat on the bench and got comfortable. His mom sat on the grass in front of him with her camera. I recognize them. They have been here for a while. I don't know their story... but you don't really need to. They are fighting. Fighting a battle that is unrelenting, horrible, unpredictable and totally unfair. It wasn't long before the beautiful sounds coming from their direction drew us all near. The boys went first!  Keegan's mom and I stood back and took it all in. In-between songs, we clapped for him. It was a moment I will never forget!  Such young talent. It was inspirational. Moving. Beautiful.
I actually have a video clip from this but am too tired to figure out why it won't post! Sorry!!
Just know... he's got TALENT and deserves a much bigger audience one day!

Kayla stayed up late. She wasn't tired after having a long nap in the med room and a blood transfusion.  Tonight, Kayla's love of couscous returned. Phew... one more thing to add to the extremely short list!

Kayla's birthday is coming up. I have a few updates about that. I am so tired my eyes are starting to sting. I promise to find time MID-DAY tomorrow when I can think to put them into better words. More updates on my mind. I'll find time tomorrow... promise. Sorry...... so tired!

Saturday, April 21, 2012

April 21st ... 34 years young.

Ahhh!! Internet is up and running. Not that I've had much time today to get on the computer.  First of all, THANK YOU for all of the wonderful Birthday Love. I feel very blessed today. 29 feels GREAT! haha. ;)

The morning started out with a lovely surprise breakfast from Donna and opening our apartment door to find it decorated by our friends Laurie, Connor (and their visiting friends). SO sweet. Thank you!
A few of the balloons made it into the apartment for some fun!

I had fun opening a lot of cards and a few gifts even from family and friends. Thank you all so much for making my birthday feel so special and "normal". Donna and I even got to go into Mud Island to the Nail Bar to get Pedicures. Much needed and such a great treat! 

Now, I'll backtrack...

Kayla is doing good during the day. We have found time to be silly even. Having Donna here has been a wonderful help and distraction.  Luckily, Kayla has remained fever free so far. We know that each round, although the exact same routine as far as the chemo is concerned, will affect Kayla differently. This time, the days are O.K. and the evenings have been tough. Yesterday, Denny got checked off to be allowed to administer Kayla a liquid Zofran to be given through her central line just before bed. It seemed to help a lot. She was able to rest (except for getting up about 6 times to pee) until 5:30am. That's when she started getting sick. It was a good stretch! Much better then the past few nights! She is in excellent spirits and we keep reminding her that she is 1/2 way finished!  Here are some pictures from the past few days that I have not had a chance to share. Not too much new info to share. Just taking it one day at a time... 

Here we found a nice quiet place outside of the cafeteria at St. Jude to catch lunch where Kayla could take her mask off. Don't be alarmed by the wheel chair. She could walk, but was very tired.

 Working on some homework while enjoying the gorgeous weather

Roller Derby time! These three were racing around the playground to see who was fastest. It melted my heart to see Kayla have this burst of energy. We all just went with it!

Taking a break and soaking up the rays. That was HARD work. 

 Sweet dreams my love. It's been a long and busy day. 

With all of this fun going on, it's a good thing you have a big strong daddy at the end of a long day (this was today) ;)

Meanwhile Anthony is WIDE awake.... always!

Friday, April 20, 2012

Internet Down

I am so bummed! I tried for another 2 hours tonight to get our computer to connect. Still having issues. Posting from a phone is no fun. I just want to say that Kayla is still about the same. Her ANC was 200 this morning so I'm sure she will be at zero by tomorrow. Still no fever (knock on wood). She has been tired but fine during the day. At night she has been very sick. It's exhausting. We got the doctor to get us zofran that will be administered through her line to hopefully combat the nausea. We are hoping tonight we all get sleep! I have some cute pictures and will post more as soon as the computer allows!

Wednesday, April 18, 2012

Day + 2

Every parent knows that sound. The frantic cough that sends you rushing into your child's  room knowing they are going to get sick. It's a sound that used to make me all of a sudden feel sick when I heard it coming from someone else. It was a smell that used to make my toe nails curl. Now, it's normal. I still hate it. But, I'm so much more numb to it now. My kid, other people's kids. It's odd how something like that can become white noise in a way. Last night, however, it wasn't a good white noise.

From 12:00 am until 9:00 am, every 20-40 minutes, Kayla got sick. The poor girl. It was terrible. You can imagine how tired that made us today. We have a couple things we are going to "try" to add to her nightly routine tonight to see if we can get a good nights rest with no vomit. We have a make-shift wedge that we have placed under Kayla's mattress to keep the head of the bed inclined a bit like the hospital bed. We are hoping this keeps the mucus from settling in her throat and causing her to choke it up and out. Also, the Doctor added a little Ativan for just before bed.  Fingers crossed.....

We had a very active and busy day at the hospital today. It's good to know that both of our kids are getting so comfortable with the hospital that they both "got lost" there today. They weren't lost at all in their eyes... but we had separate episodes with each where we couldn't find them. Honestly, we weren't worried because everyone here knows us and our kids. Still, it made today a bit of an adventure. Never a dull moment.

Tonight we cheered Kayla on after she chewed and swallowed down one whole noodle! It was the first thing she has eaten all day. I understand she is full-ish from the TPN, but she still needs to keep her body chewing and swallowing and processing solids. It is very important. This is part of why we only have her on TPN at night. It gets unhooked before we leave for the hospital so that by dinner she is hungry (even a little). We are trying.... 

Today, Kayla did not get sick once. She was just tired. To be expected! She is fighting through her homework assignment. A story about a Sloth.  We are doing multiple loads of laundry and getting through another night. Celebrating the fact that we are 1/2 way to home! Praying this is her cure. 120 children were scheduled to come through A/T today. 120 kids that should be at home. My heart aches for the families who learned today that they will begin this fight or continue the fight because of a relapse.

BEST GOD-MOMMY EVER. Donna filled a syringe up with lemon juice. Kayla hates taking her Gabapentin (for her jaw pain) soooo much. She cries hysterically painful tears every time she hears, "It's time". (this is 3 times a day) So, Donna decided that if they take something nasty at the same time, it might help. It did!   HAHAHA!!!! Donna, you ROCK.

Tuesday, April 17, 2012

Quick Update

How is Kayla? Well, still no fever!! We are hoping that she remains fever free. We aren't sure what her ANC is because they didn't do that blood test today. That will be tomorrow. 

Today, Kayla was either full of energy, dancing, singing & laughing or she was sleeping.  I am exhausted which is why I'm keeping this short and sweet tonight. All is good. Nothing major or interesting to report. Sometimes no news is good news!

Monday, April 16, 2012

Home Sweet Target Home

We're back! At least for tonight. Kayla's temperature is at bay for now, but the doctor is pretty sure that as soon as she is neutropenic (most likely by tomorrow) she may spike another fever and be admitted back in. She really wanted us to be able to go home and have a good night together. We can deal with what is to come when and if it does. For now, it's a big relief to all be here in the Target House together. Kayla had a nice bath and is getting her bandage changed as I type. We will not unpack the bags too quickly just in case.

Today Kayla received her stem cells. It went well, but she did get sick during it which is pretty common. She smells like beets again.

Precautionary medicine in case there is any reaction to the cells. All bags remained unused since she had no reaction.

 The cells arrive frozen (the container on the floor). Then they are thawed in a very special machine.
Here is what Kayla's stem cell transplant looks like. Those baby's are little miracles that will make her get better faster. She gets them after each round of Chemo. 

In a few minutes we will go to the Hostel to get Donna settled in. If it looks scary in any way we will be out of there! It got really good reviews on Yelp... we shall see! We have an early start back at the hospital tomorrow so I will make this short tonight. Just SO glad round two is over with.  

I just want to say a HUGE THANK YOU to all of you for all of the loving notes, emails, comments, facebook messages, cards and prayers. Knowing we have so many people out there following our story and supporting us the way you all are is an incredible encouragement in our lowest times. Thank you all so so much!

Sunday, April 15, 2012

A day of rest is good

Finally. Round 2 is OVER. Kayla's fever seems to be at bay and her swelling is gone!

Kayla fought to smile here. Our little warrior. She had a few sips of soup too. Way to go Kayla!

All of the cultures came back negative. Tomorrow she will be able to come "home" after her G-CSF shot. Yep. Back to those again! Fun, fun. Denny and Kayla busied themselves decorating windows and playing today in between naps and other fun medical adventures!

Anthony, Donna and I enjoyed boxed seats at the Redbirds game. It was fun! I still can't believe that they charge $25 for nacho's in there when you can just walk out a door and down the hall and get them for $5  Do people REALLY pay those prices??

Anthony had a blast!

Me and my boy. My eyes tell the story of a mom who just watched an 11 year old "healthy" girl sing the national anthem beautifully.
 The mascot visited the floor during the game. Anthony was SO excited!
Our private boxed seats ... all to ourselves. I have never sat in boxed seats in my life. Kind of cool! Would be cooler if my mind wasn't spinning.

After the game, we decided to walk around a bit. Heck, we paid for parking.... we better get out and see what the buzz is around town right? We went to the Peabody Hotel and fought for a view to see the famous ducks. Anthony was able to wiggle himself through the crowd to sit front and center "criss cross apple sauce" to see the ducks parade on by down the red carpet. I would have posted pics but I couldn't see one duck. Promise. Sometimes being 5'2" is really hard. Everyone in front of us was really tall. At least Anthony saw them. We know now that if we visit, it will be when Kayla's counts are HIGH because the crowd is clueless and brutal. 

We walked toward the famous Beale street. It was dirty, stinky and hot. Lots of people sneezing and coughing. I wish I could wear a huge sign. PLEASE don't touch me. Please don't cough in our direction. Makes me miss the bubble of St. Jude.  This looked fun though. Check out this ride! Only $45 for a 30 minute ride... is it a bargain or not?

If you look close, you will see a dog............... see it?

Beale St.  Been there. Done that. Seen it. Don't need to see it again! Whoa. Just whoa.  Anthony said he doesn't want to go back ever again because it's too loud and too many people have that stinky smoke fire coming out of them. haha! 

Tomorrow, Kayla will be released to come "home". Donna and I searched for a place for her to stay while she is here that is affordable. Target house is VERY strict on their 4 person to a room rule. So, she just needs a place to rest her head at the end of the day. We found a near-by hostel that is only $15 per night. It's a bunk bed situation, but Donna is up for it. She is just thrilled that she will be able to afford to stay past my birthday (the 21st). I am SO happy! It will be awesome to spend my birthday with her here with us!

We are thinking Donna and Anthony should spend the day at the zoo tomorrow. That way,  I can hang at the hospital with Denny and Kayla to wait for her release. This way, they can have FUN! We will figure it all out.  Just so glad Donna is here. So wishing the sleeping arrangements here were more flexible. It's ok! Just so glad to be HERE.  So grateful........ so so so grateful.

Saturday, April 14, 2012

Chemo sucks

No one ever said it would be easy... just worth it.

Kayla. Oh sweet baby girl Kayla. What a day. The puffiness was lessened but is still present. Especially in her tiny eyelids. I hate that! It makes me sad to look at her normally perfect and beautiful eyes and cringe at how painful they must feel to her. I know they will go down soon and that is good. It can't go away soon enough for me.  Donna bought Kayla some really cute Mickey Mouse earrings when she was at Disneyland last. Kayla was very excited and wanted them changed right away. She sure loves Donna (so do we)  :)

Kayla's fever continues to come and go. It's being "managed" by Tylenol right now but we still don't know what is causing it. The cultures typically take 48 hours to come back with results. So, we wait and wait. Since birth, Kayla has always had a very sensitive gag reflex. Now, it's really bad. She gagged on the thermometer under her tongue and vomited. Later, she had me cut her gummy vitamin in 1/2. Nibbled at half of it. By the third nibble of the first half, it gagged her and she vomited up the 3 or 4 sips of the milk shake I had just coerced her to drink just before along with more meds. Meds that had to be taken again because it hadn't been long enough.  All that work and it was for nothing. Frustrating. We will have our favorite girl, Ashley from OT come and work with her asap on this. We have realized that a lot of it is mental at this point. She is so afraid of swallowing anything.  We hope that Ashley has some good tricks up her sleeves. Kayla gets disappointed in herself but we continue to tell her how proud of her we are and that she is doing the best she can.

Anthony was happy to see his daddy today. So happy he spit on him. Literally. On purpose! We know. It's for attention. We know. Sometimes attention is attention. He got busy writing an "I'm sorry" letter and he spent the next few hours alone with his dad. It's hard on a four year old to know how to express that he misses his dad. He says, "It's not fair!" a lot. How do you explain to a four year old that cancer isn't fair?
Still. We continue to teach the lessons and do what we have to do. How do you keep strong? You have no choice. That's how.

Kayla is being encouraged to drink from her milkshake just before the "vitamin" incident. Tic-Tac-Toe. If she loses, she takes a sip

We got some free tickets for a semi-pro ball game tomorrow. It's box seats! Anthony has never ever been to a baseball game, so he will have a blast! Donna and I will make sure that Anthony has good time. I want him to have good memories from all of this.  We have two kids to protect here. Sometimes it takes sacrifices. I know Denny will stay on top of Kayla's care like no other. I will keep my phone on my lap and never stop thinking of Kayla while we are gone.  We will be just around the corner... which makes me a little more at ease.

Tomorrow is a day of "rest" for Kayla. No more Chemo. She should start to feel a little better and hopefully have more energy. Soon she will be throwing that foot ball again.

Friday, April 13, 2012

Day - 3 - I should have knocked on wood

 The protective gear that is worn when dealing with any bodily fluids

Today should have been easier. It should have.... but it wasn't. Maybe it was just her body catching up with yesterday. Not only was she sick this morning especially, but she started to swell late morning. Her poor little eye lids were so swollen she could barely open them. Her jaw and cheeks were swollen and there was a slight rash developing on her left cheek.

This morning, I thought we were off to a good start. Kayla was playing Mario Cart on the Wii and seemed to feel "ok". She would stop, get sick, and continue playing. It was comforting to see that she could keep playing despite how sick she would get. Mostly, she slept today which was fine by us! Physical Therapy came in to do some work with her. We went fishing for these little magnetic fish that had been carefully strewn all around the 2nd floor. Kayla wobbled as I carefully walked beside her to make sure she didn't fall. It was really hard for her to see because of the swelling in her eyelids. After the slow fishing trip, we walked over to the physical therapy room to work on a puzzle. There was a balance strip placed with a slight step up and then another strip. The goal is to walk along it toe to heel. It was wobbly and slow and painful for me to watch. She clearly just wanted to sleep, but we kept up the hard work for a little bit. When I saw that she had given it all she had, the therapist asked her if she could do five more for her. Each trip up and back the strips earned her one puzzle piece. I could hear it in Kayla's breathing that she just didn't have it in her. I told the therapist that I would be fine with one more. Kayla looked very relieved.  I don't see the big deal. She was throwing a foot ball the other day. She was running and playing. She will bounce back. I understand the importance of movement, but there will be time for all of that. What she needed today was sleep! Poor kid.

About an hour or two later, I went over to rub Kayla's head and noticed she felt very hot to my touch. I grabbed the thermometer and took her temperature. Sure enough, she had spiked a fever of 103.0. Yikes. Then, she started throwing up again..... Torture. So sad to watch. We called in the nurse and they ordered blood cultures, Tylenol and 1 dose of an antibiotic. We kept the cold wash cloths coming and she slept and slept. It is now after 7:30pm. Kayla's Temperature is currently 101.  It's coming down! We hope that tomorrow will be a better day. We hope the temperature stays gone and that the cultures come back all negative. There is never a dull moment around here! 

Sleep my baby, sleep.