Tuesday, March 13, 2012

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!!!!













9 comments:

  1. Great pictures! Sending our love your way and hoping the next couple days are fun filled. You are in our thoughts daily.

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  2. WOW. What a laundry list of things to do ! If any family can do it, yours CAN! You, Denny, Kayla and AJ are the best team possible to conquer this thing we call "C". Denny is so meticulous I know he will do everything right! And Annie, you are so on it, that you will make sure it is right! :) I love you all so very much. So nice to see the kids playing in the warm sun. Kayla still has that innocence, but from day one she has had an old soul and it is this soul that is making her find strength from nowhere and use it to her advantage!! Please tell her I admire her so much it is beyond words. She is such a true warrior angel!--Nicole

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  3. We received Kayla's beautiful thank you card in the mail today. I just have to say, with all that you are going through and all that is on your minds, the fact that you took the time to have Kayla send that out is such a testament to who you all are. (My daughter, Nicole, made Kayla the little clay angel holding the rose.) My youngest daughter, who is almost Kayla's age, has been to no fewer than 12 birthday parties this school year alone, and we have received exactly ONE thank you. ONE. And to my knowledge, none of those families is going through anything near what you are. This small gesture meant a lot to us. Even though we don't know you personally (Nicole Choi is my lifelong best friend), it's obvious what kind of mother you are, and what a great family you have. We will continue to read your blog and pray for Kayla and your family each and every day. I think it is awesome how you are keeping this blog. I'm sure there are days where you just don't feel like writing, but you do anyway, and you do a GREAT job of it. Everyone appreciates it, I'm sure, but not as much as Kayla will one day when she looks back on this "bump in the road" of her childhood. Stay strong, and give that beautiful girl of yours some extra hugs from some friends in Arizona!

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  4. Chris, Jared and Jeff GouldyMarch 14, 2012 at 11:05 AM

    After reading today's post I was actually energized at the power in your voice and that of Kayla's. ..."knocking it out of the park...", "cancer no longer welcome...". What fighters you are - keep it up! Tough days are ahead but remember to read back on these posts when you need the added strength. Love, the Gouldy's

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  5. My continued positive thoughts and daily prayers are with you as Kayla enters this next chapter. She has proven she's a strong fighter and she'll BEAT THIS

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  6. Annie - you and Denny are two of the mosting amazing people I know and with that being said, Robert and I know your entire family will continue to "march" through this next phase and will conquer all of the roadblocks you may come across. Yes, there will be good and bad days, but just keep reminding yourselves that in the future all of this will just be a distant memory and nothing else! Kayla has just been AMAZING through all of this and we know she will continue to do so. We read your blog daily and love all of the photos! As Kayla matures, she will come to cherish this blog you have created and this is one of the best and loving gifts you could give her. She will come to realize how much she is loved and how much her mother and father fought for her!!! Hang in there and we're sending positive thoughts and blessings your way daily!!!

    Love Cindi & Robert J.

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  7. "knocking it out of the park" and "cancer, you are no longer welcome here"!!! That's the spirit and attitude that will get you all through this. Envisioning the end of treatment and NO CANCER CELLS! Emilie had a bone marrow aspirate yesterday and no cancer cells!! Same is going to happen for Kayla! GO KAYLA!! Love & prayers to all of you....

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  8. Sending you lots of love and prayers!!! Kayla shines even through the blue mask. Her eyes just smile :-) Jodi, Andrew, and Halie

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  9. Hi Annie and Denny!

    How familiar your updates have been since you arrived back at St. Judes for the transplant. I was a BMT nurse at CH Los Angeles and even went out to St. Judes to check out the facility to see what it was like. From my experiences at CHLA and hearing from our Attending doctors....you guys are in the RIGHT hands :). I have full confidence in not only their abilities as a staff at St. Judes....but in the research behind it all that they have been a part of. It amazed me how quickly the kids came in ....and filed out of autologous transplant, even though often worked with the blood cancer side. And though the kids can get pretty sick, how quickly they bounced back continued to amaze me. The fact that they somehow facilitate families staying together (through various creative ways like the fishbowl), is a HUGE part of their healing :). Yay for fishbowls :).

    I will continue to pray for you each, espeically Kayla....that the chemo would kill all the cancer cell and that the transplant would be successful in even the minutest unseen ways. I'll be praying for that ANC to rise, rise, rise :). All the very positive thoughts and prayers being sent to you this eve of conditioning night.

    stacy

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