Birthday and Zoo

It was a lovely birthday weekend. I ran my 3.7 mile birthday run, got a date to Red Lobster with my Steve, played frozen all day with my new ice castle from my daughter, ate a delicious blueberry pie, had a balloon war, and I got to go to church! I am so incredibly thankful to not be in the hospital this weekend and be able to spend the time with my family 😍

My puppy ate a cup of popcorn!  Pretty good for not eating anything for two weeks.  Good puppy!

We had fun at the zoo with friends.  Daddy tried to fight with the peacock.  I think the peacock wins though.

The peacock touched Alanna.  She really liked it :)

Aggressive strike back pose from this gorgeous bird.

Thank you for coming Crystal and Brooklyn!  This was so much fun!

Ruff Ruff!

A traditional Fourth of July

 We had the bestest, grandest, most wonderful, perfect Fourth of July.  What made it the bestest?  It was exactly like last year's Fourth of July.  We spend it in Goleta with our ward family eating pancakes and then joined the DAR ladies on the Trolley for the parade.  We went swimming and ate BBQ.  Then we topped it off by watching fireworks in the exact same place with the same people we watched fireworks with last year.  I am amazed at the normal days we c!an find.  We hadn't celebrated a holiday outside of the hospital since Valentine's Day.  Oh, how our hearts soared at feeling grounded for a day.  We love all of you that were able to spend it with us.  We saw so many of you, and met some new friends as well.  Thank you so very much!

Negative Infection Check

June 22 Alanna caught a little bug.  Her White Blood Cell count was low so her immune system was thought to not be able to handle it.  So with a barely fever and some vomiting her doctor sent her to be admitted to the hospital Saturday night.

The ER tried to treat her as if she was an adult and I was not pleased.  They scared her and her heart rate went high and they kept testing her for sepsis.  They put her on a general antibiotic.  She did have a slight fever when we first got there (100.7) but after the initial fever she never had a fever again and she didn't vomit once at the hospital.  They made us stay for 48 hours while they waited for all of her blood cultures to come back to make sure she didn't have any infections.  After 48 hrs we were good to go.  It wasn't fun but we were thankful we had decided t.o stay in LA that particular weekend because just checking ourselves into UCLA was so much better than being driven by ambulance from Goleta.

This experience has taught us that we will be spending the majority of our time for right now in LA rather than going home to Goleta.  We'll be back someday when Alanna's health allows it.

That weekend we also had some fun with some cousins. 

I couldn't seem to get her to wear the Moana dress with the Moana wig but maybe she will someday :)

Doctor Watson

The last quarter of graduate school has not been our focus. Our entire focus has been our daughter’s fight with cancer. I am proud and so impressed with this guy. He has supported our daughter and me with an exceeds expectations rating in addition he has also earned a PhD in Spanish Linguistics! He deserves so much more than I can give him.

Three days before commencement Alanna was discharged from the hospital after getting her feeding tube.   The hospital staff was accommodating in hurrying to make sure we could get out in time to go to Goleta for this.  I also was a fast learner in learning how to use the food pump.

During commencment I was amazed that Alanna and I were there.  Actually a bit shocked, I shed tears of relief and joy.  I am so happy to have spent this day all together tying the knot at the end of our UCSB experience.

Alanna pretending to sleep.  I guess it was a bit boring. . .

CONGRATS DR WATSON!!!

We are so extremely proud!

Radiation Side Effects

With the end of Radiation Therapy.  Here are all of the side effects that we experienced:

1. Severe malnutrition.  Quick loss of 20% of Alanna's body weight.  The first four weeks Alanna experienced nausea and vomiting.  Weekly chemotherapy also added to this.  Chemo changed the way things tasted.  Almost all of Alanna's favorite foods now taste bad and she refuses to eat them.  Alanna also has always refused to eat any new foods.  The only thing she is still willing to eat are chocolate muffins and only very small amounts.  This has led to another hospital stay which started last Friday.  We should be discharged this coming weekend.  Last Saturday Alanna was fitted with an NG feeding tube.  Terrible experience for us.  Sticking a tube down your babies nose is not something I will want to relive again.  Which I will have to in 30 days when the tube needs to be replaced again.  I hope it is very temporary.  She will go home with her tube this weekend.  We are here until they get the dosage right and I learn how to care for her while she uses it.

2.  Raw, scaly, sore red head.  To me it looks like her head is burning in a way. (The scar is from her brain surgery at the end of March).

3. Hair loss.

Alanna Loves Radiation

I have been counting down the days left for radiation.  Today was our last treatment.  I am so relieved and excited to be done and I thought Alanna would feel the same way.

Interestingly, this is not true.  Alanna actually has fallen in love with the routine.
 Two nights ago when she asked, "Is there radiation tomorrow?"
 I told her, "Yes, but. . ."
Alanna, "YAY!"
I was completely taken aback.  I was going to say: ". . .but there are only two days left!"
Me, "You like radiation?"
Alanna, "Yes!"

Okay. . .

So yesterday morning on the way to radiation I decided to test this.  How could she love radiation so much?

I grabbed her puppy.  "Alanna, Wally has never been to radiation can you teach him why you like it?"
Alanna, "Because of cuddles"
Lots of cuddles have always happened during radiation.  Alanna and I snuggle on the gurney together and I hold her tight while she is sedated.  What a sweet loving girl this is.

Alanna, "Wally, we are going to radiation."
Me as Wally, "What is radiation?"
Alanna, "It's where they make us wait a long time!"
Oh, my heavens what a funny answer!  And true, we do often wait forever!
Alanna, "This is the bathroom, and the Mickey mouse face masks."
Wally, "Ruff!  Ruff!"
Alanna,  As we start moving towards the Radiation room, "Wally this is the big Tic Tac Toe Board, do you see it?"

Wally, "Arf, Arf!"
As we are pushed into the room with the big machine:  Alanna, "Ooooh! This is my favorite part!"  She then snuggles up right next to me and gets completely comfortable.  Her nurse, Sophie, tries to put her pull-sock on (pulse monitor).
Sophie, "Where does the pull sock go Alanna?"
Alanna, "Well it's called a pull-SOCK!
Alanna, "My foot is playing a game! (She wiggles her feet all over the place and Sophie tries to catch a toe to put the sticker on!)"

Once Sophie finally gets the pull-sock on she puts a blood pressure cuff on her ankle.
Then Alanna snuggles up and our anesthesiologist hooks up the sedation to her port line.
Now this is Alanna's favorite part: she holds mommy close and mommy holds her close.  Alanna always says, "I Love You" two or three times while she falls asleep.
For the first four weeks of radiation I knew Alanna always mumbled something to me as she was falling asleep and I couldn't quite catch it.  I was so surprised and touched when I finally understood what she said as she fell asleep every time.  What sweet words for me.

For Alanna, radiation isn't about killing cancer cells in her brain.  It isn't about laying still trapped in a mask for twenty minutes.  It isn't an inconvenience to her schedule.  Nor the reason she missed the last term of kindergarten.  It isn't something she fears.  It is a special time where she feels completely and utterly safe with her mommy.  And she loves it.  I am amazed at her strength and ability to find comfort and joy in a place where I never would have expected it.

Three weeks of freedom!

We have had a blissful three weeks and three days of freedom.  Ah!  Freedom!

We did everything we could do and wish we could do more.  We did fun things like go to the zoo; blueberry picking; shopping for clothes, books and toys; going home to Goleta to sleep in our own beds; visits from grandparents, friends and playdates; visit school, the beach and the playground.

One of Alanna's best purchases is a pet bed for her to sleep in.  She is now sleeping through the entire night comfortably pretending that she is a cat or a puppy.  She also got a dog chew toy and a puppy leash for herself.  I am so happy she has found a way to be comfortable even if I now need to call her Bingo, Squirt, Kiki, or Wolfie.

We did less fun things like go to the doctor, get a blood transfusion, go to radiation, drive 99 miles home and back to Los Angeles, pack up all of our belongings to get ready to move, and get car repairs done.

I am so very grateful for all of the friends who came to help us move.  My parents helped throw out or donate tons of our excessive belongings.  Then I had 12 friends come pack up everything left.  They finished in six hours!  Oh how amazing that was.  Then Steve with 8 friends did the actual moving of furniture and boxes.  Half into storage and half into Steve's parents home.  Much of the large furniture was drug out to the other end of our complex to be taken to the dumpster.  We will have more friends come next week to help us clean the apartment before we turn in our keys.  I am so grateful!   We honestly couldn't have done it without the outpouring of friends.  Thank you!

I also got to do some normal things!  Laundry, cooking, grocery shopping, and sleeping without nurses walking in all night.  It felt so nice.  The home we stay in at St. James in Los Angeles is so very cozy and we are comfortable.

And yes, three weeks of freedom was blissful but we were reunited by our caring hospital staff last Friday.  Alanna was admitted for severe malnutrition.  On Saturday a NG feeding tube was inserted down her nose and she is now being fed 24/7 to plump her up.  She had lost 8lbs in three weeks due to extreme nausea and some vomiting from Radiation.  The chemo has also changed the way foods taste and she no longer cares to eat any of her favorite foods.  She will be able to go home with her feeding tube probably by this weekend.  So we should be able to enjoy our freedom again.

We find the hospital remarkably cozy and friendly.  We have been greeted by all of our favorite hospital staff and I am amazed at how many people we know and who recognize us.  It feels like a happy reunion.  The playroom is wonderful and joyous.