Getting Settled In + Other Promised Info

The weather was about 84 degrees today and humid! Not extremely humid, but enough that my hair started to frizz a bit. We ran the A/C in the apartment and got outside a lot today to play. 

Later, we got a chance to run out and get a few items to make our home away from home a little homier. We got to go to Costco and the Dollar General Store. They aren't conveniently located just 2 minutes from home anymore. Costco was about 20 minutes from here. Not too bad... Shopping is going to have to be so much better planned after this. We will be making most things from scratch and reading every single label carefully.

When we got home, we looked out the back window to see what action was going on out back. To our pleasant surprise, it was game night! A bunch of students from Boston University drove up to play with the kids! How sweet is that? I wish I had been able to have my better camera out there. The iPhone is great if you are close up, but there isn't much of a zoom feature... yet. Maybe in the iPhone 5. ;) Anyway, I was able to snap a few pictures. It was gorgeous out tonight.

You can see Kayla... she is in the purple striped dress. They had fun with balls on the parachute.

Playing Hot Potato

Tonight, Kayla chose El Torro Loco for one of her last meals of choice. When we walked in, the Grizzly/Lakers game was on. One of the players, Pau Gasol was being interviewed. We immediately noticed the background of where he was. St Jude! We couldn't really hear what was being said because the restaurant was busy. We did see some familiar friendly faces though. Kayla recognized Ryan and Angel right away! So cool to see these sweet kids on a big screen TV.

Angel is in the pink striped shirt (her favorite color) and Ryan is to Pau's right in the maroon shirt. Ryan has the same diagnosis as Kayla and is the same age. He just finished his 3rd round of Chemo. One more to go! I see the boy in the blue a lot, but don't know his name.  Such a great picture... taken last night! :)

We sat down and Kayla ordered Nacho's. We were proud of her for trying to eat as much as she could. She knows that the meals to come will not be ones she would necessarily choose and so she is really trying to enjoy some favorites now while she can. Once she is admitted and starts Chemo, we will have to really limit her diet.

Earlier at the hospital, Kayla had some tests ran including one that measured her hand strength. It involves a pinch and grip test. The average patient who has undergone radiation is typically 6lbs less then before starting treatment. (they measure the strength in lbs.) Kayla was 6 lbs STRONGER!!! See? She, is a fighter!  Her grip and pinch both improved and her reaction speed was faster. We are so proud of her! Just goes to show how much she accomplished during our break home.

Tomorrow night at 8pm, Kayla will be admitted inpatient for our first round. Ok, so I know I promised a list of our upcoming tasks... if you want to call them that. Here is a summarized list of what must be done while Kayla is inpatient.


Daily:

-Mouth Care 3 x per day (rinsing with a special mouth wash to try and prevent mouth sores)
-Sitz Bath 2 x per day for 15 mins each
-Bath 1x per day
-Vitals every 4 hours
-Laps: 1 lap around chemo floor 5 x per day
-Teeth: 2 x per day
-Dressing Change: As needed
-Intake/Output record. Everything that comes out of kayla must be weighed and charted to make          sure she is getting enough fluids. Whoever is cleaning up and handling this must be protected w/ gloves and or eye goggles to protect themselves from the poison's that will be eliminated. (this is where I cried....)
-Weight 2 x per day (8am & 8pm)
-Physical Therapy will come to her to keep her active-ish
-PEP (positive expiratory pressure therapy) To keep her lungs exercised and healthy 4x daily.
-Clean PEP nightly 


Kayla's chemo schedule will be as follows:
Day -5  Admitted
Day -4  Cisplatin, amifostine, and vincristine***
Day -3 Cyclophosphamide, and mesna*
Day -2 Cyclophosphamide, and mesna*
Day -1 No chemo therapy, day of rest
Day  0 Stem Cell Transplantation
Day +1 G-CSF** starts
Day +6 G-CSF** continues until counts return to normal, vincincristine

* mesna is a drug given w/ cyclophosphamide to help reduce damage to her bladder. On these days, it will be mandatory that Kayla urinate every 2 hours (all while we are geared up to protect ourselves)
** G-CSF Is given to help her white blood cells return to normal levels. These are extremely important to the recovery process.
***amifostine is given to prevent the effects of hearing loss from the cisplatin.

Kayla says she is going to knock this out of the park! Her spirits are high and she is ready to kick cancer booty!


Cancer... you are NO LONGER WELCOME HERE!!!!

Here we are, in Memphis!

3:00 am and my alarm went off. It was dark outside as we walked to the car with such mixed emotions. Thank you to my sweet friend Thalia who drove us to SFO this morning. Hours later,  here we are all together again in Memphis. Our flights went well. Anthony is a wonderful traveler. He loves being up in the air. It was so great being picked up at the airport in our own car. That little touch from home served as such a comfort as the reality of what we are about to endure came closer and closer. 

We drove the familiar streets back to the Target House. When we pulled up, I was pleasantly surprised to see that the beautiful cherry trees were all in blossom surrounding the grounds! Gorgeous pink blossoms which seemed to make the moment much cheerier! We walked in and the familiar faces we just said good bye to only weeks ago happily greeted us.  Memories held true as Anthony ran straight for the movie section in the front lobby. We took the elevator back up to the 5th floor up to our new room! Everything is flipped, but I like this room SO much better! I love being able to watch the action out in the courtyard! We can see  people coming and going to Target House II. I can't wait until a few months from now as this grassy area will be covered in Firefly lights (or as I called them as a kid, lightening bugs). I fondly remember how we used to run around on the grass catching them. It was the highlight of the humidity. That and the amazing thunder and lightening storms to come! I love them!

Just after this was taken, there were a few kids outside kicking a soccer ball around. It's going to be SO much more entertaining on this side of the building!

Our view looking left

Denny had a vegetarian chili cooking in the crock pot. It smelled so good!

The kids happily watched Cars 2 while I unpacked

 Now here is a sight I CAN live without.

I started a load. Baby puppy was FILTHY after flying all day. I sadly stuck "05" on the front of my machine. This is what we do when we have a load of laundry in so neighbors can find us if we forget to move our stuff and they need to use it. (that sign above "reminding" people to use magnets was put up by me during our last stay when we had a few neighbors who notoriously would leave loads in all day and wouldn't put magnets on their units.
I love that it's still up! hahahaha.

Denny and I are going over the list of rules for when Kayla will be admitted inpatient. I have to admit some of it had me in tears. Just some things I didn't expect to hear. But when I see these kids walking around (or running!), it assures me again that Kayla will be one of those lucky ones. This is temporary. It isn't forever. Hopefully, it's just this one time in her life.

I am going to read over this important stack of papers filled with way too much info so that I can fill you all in better on my next blog. Denny just finished going over it all and read a bunch of it to me. I want to get my facts straight and only give you the important info. At least I'll make sure it's only the info that will pertain to Kayla's treatment. Some of the info is for high risk patients (Kayla is Average risk). Hearing Denny read me some of that info had me in tears. I am grateful again for the small blessings... or huge. Like the words "average risk". 

We got all unpacked and I made a list for Costco tomorrow. Kayla has school at 11:00. It's a very light day. Denny is hoping to get to the hospital early enough to grab us some tickets to go and see the Grizzly's/ Lakers game tomorrow night at 8pm. That would be a fun thing to go and do before Thursday. Ok. Scratch that. Just got a text that the tix were handed out today. They are gone. Such a bummer!! Well, it wasn't meant to be I guess.  :(

Anthony and Kayla just took luke-warm (at best) showers. Denny thinks it's because it's peak hours. I don't know. We never had this issue over in the other room. He swears it got hot this morning. One more thing to miss about home I guess.  I'm calling maintenance in the morning if it's not hot for me. I mean, come on! We need hot showers...

With love from Memphis,
Annie

ps. I forgot to include Target House 1 to our address under the blog title, "We have an address". I amended it.

Ready for take off

Anthony and I are all packed and ready to go. I set my alarm for 3:15 am... ouch!  I am sitting on the couch doing some deep breathing while I watch the last sunset from my couch for what will seem like an eternity.  The only thing that makes tonight ok, is knowing we will see Kayla and Denny again. Our flight should arrive at 2:15pm and we will just hang and wait for Kayla's appointments to finish up so they can come and get us.

Tuesday is a pretty light day as far as St. Jude scheduling is concerned. It's a good thing because it's our last day of Kayla's life before those nasty drugs have entered her tiny body. I want to spend them with her doing what ever she wants!  How can you help but not think that way? I can't. I think it must be normal as a parent to feel that way and wonder if and how this will change her. We can only hope that God will wrap his loving arms around Kayla and protect her from harms way. I pray every day that the only thing that comes from this treatment is that she remain cancer free forever.

Yesterday, Kayla and Denny got to get out and enjoy the Memphis Zoo. The sun was shining and they had a wonderful time. Kayla's friend Angel and her mom Damaris were able to join them too which made it even better!  Angel is such a sweet girl!  Here are a few pictures that Denny sent me. I am SO glad they got out and had some fun. :)

 Someone sure is comfortable!

The dinosaur exhibit. Anthony will LOVE this!

Ok, well, it's almost my bedtime. I am going to hit the sheets early tonight so I can get up at the ungodly hour of 3:15am! Yuck!!!  It's ok. Arriving at 2:15 is wonderful. I will enjoy the last night in my own bed tonight... Tomorrow I get to hug my husband and daughter. I have missed them so much!

Tomorrow we fly. Tomorrow I will be writing this from a different couch. Tomorrow, I will be missing this.

Good night my sweet friends!

It's FRIDAY!!!

TGIF! I know Denny and Kayla are SO happy to have this week over with. The weather lightened up on them and they will be able to have a nice and relaxing weekend. Tomorrow, weather permitting, they will enjoy a day at the Zoo! I am so glad that Denny is going to take advantage of this last weekend before starting Chemo. I know they will have a blast.

Earlier today, the doctor decided that we needed to try and increase Kayla's appetite stimulant to see if we can use these last few days to get her to pack on a few more ounces. We will try anything to avoid TPN.  Let's just say she was "happy and hungry".

She found ways to amuse herself... and her dad!

Back at home, Anthony enjoyed climbing our lemon tree and swinging on his swing. For those of you here in Novato, WOW have we been blessed by some great weather! All our windows were open. The sky was a deep blue. The sun was hot. It was just so fantastic. Such a great reminder that there is no place like home!!!

We will be busy here the next few days packing up and getting ready. I hope you all enjoy this weekend. I know we will!

For our local amazing friends

Sadly, I saw today through our school email that Mrs. Romer's cancer has returned. (Mrs. Romer is the school librarian). She is such a wonderful lady. Kayla ADORES her!!!  Everyone adores her! Mrs. Romer will be taking a leave of absence to receive her treatment.  We are so very sad to see that she will have to fight this cancer yet again. It's devastating. Our love and prayers go out to her and her family.  Our great school community has quickly stepped up with meals for her through the Helping Hands site. If you are local and want to or can help this wonderful woman who NEVER misses a day at a job she loves, please click on this link. Meals for Mrs. Romer

We are so proud to be a part of such an incredible community that reaches out to those in need! If the link doesn't work or you have questions, Nicole Choi can help you be able to help her. She can be reached at nicolekchoi@yahoo.com