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.