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.

Discharge, Home, and Hats

We were discharged on Tuesday!  And now it is Monday, so we have made it six days so far without going back to the hospital.  (knock on wood).  It has been quite a transition to do radiation, chemo, and clinic visits out patient.  Taking medicine at home and begging Alanna to start going to sleep at a reasonable hour which we still haven't managed. 

On Tuesday we went to the Santa Monica Pier to play in the sand.  We did not walk the pier (Too many germs).  Although before we left the hospital Alanna got some medicine to boost her white blood cell count which skyrocketed.  So her immune system is actually not bad.  We are still being cautious and washing hands constantly.

On Wednesday and Thursday we went to the LA zoo.  Alanna loves the carousel and the playground.  She also personally met a peacock.  Her favorite this time were all of the big cats. 

On Friday we spent way too long at the hospital.  Outpatient means waiting forever at the doctor's office, waiting for the chemo drug to be ordered from the pharmacy, and watching the clock forever because for the first time in forever we were going home for the weekend.  And waiting was torture.

We did make it out of there in the early afternoon and got home.  Oh my heart!  It was like walking into a time capsule, a life that has only been a memory for 8 weeks.  To run into people while doing other things!  Hugs at weight watchers, church, a friend's house, and to all of you who stopped by to see us.  The love that was shared for those few hours while we were there.  With great love for the wonderful sister who sat by me during sacrament meeting with tissues to dry my tears. I love seeing all of your faces and look forward to getting to stay again someday.

We just put in our moving 30 day notice on our apartment.  Steve is graduating hopefully by the end of this quarter (the graduate department with big kind loving hearts waived his defense for Alanna.)  We will need to store most of our belongings in storage and at Alanna's grandparents house.  Alanna's grandparents are going to set up a room just for her so she still has a place to call home for weekends when she gets to go home (Thank you!).  We will pack up and move out before the end of June.  It is so sad to see this happen.  How I already miss my home but I feel like I have already learned to live with out it.  Amazing what we can do when we have no other choice.

While at home last weekend Alanna's hair fell out.  It has been very difficult for me to watch this process.  Alanna is so strong, "It's okay, It will grow back someday."  At first I was saddened, now there is visual evidence that my baby has cancer.  I can now see her long scar on the back of her head reminding me that she went through a very complex surgery.  The emotions have pulled on my mommy heart so much and started to leave scars.  However, this was the perfect time for me to remember my own life lessons.

". . .I learned that like Alma’s people who were enslaved and their afflictions were great the Lord didn’t immediately take away their trial but he made their burdens light.  “. . . yea, the Lord did strengthen them that they could bear up their burdens with ease, and they did submit cheerfully and with patience to all the will of the Lord.” (Mosiah 24:15) When I learned that I could choose to be cheerful during a troubled time my life changed.  My heart became light, much worry and fear evaporated.  As I trust the Lord to take care of what I can’t my burdens truly feel lighter." (March 18, 18)

Too be cheerful even now.  To find joy and light in the hugs and cuddles from my little one to be thankful for the few wisps of hair that she still has.  That she is still with us today and that she has energy to still play.  We have so much to be thankful for.  So much good has happened even now in our circumstances.  I have never been alone.  The prayers and love from my caring friends have held me up.  The Lord and his angels have not let me go once.  My daughter is thriving in the most unimaginable circumstance.  We will be okay.

Forecast for Discharge Looks Good!

We have had  a lovely energetic girl this week!  And the best news is we have a discharge date for Tuesday (May 15)!  Where we will move out of the hospital and into St. James Inn (Our temporary home that is 2 miles away from the hospital.  I am still in denial but all our doctors and nurses say everything looks good for discharge!  Antibiotics end on Tuesday, which means goodbye hospital.

Last Wednesday Alanna got her first dose of chemotherapy (which will now be weekly on Fridays).  This is how she looked after chemo:

And since chemo I have seen an increase of energy and playfulness.  Sadly her immune system is already crashing because of the mixture of the infection she had and the radiation so we are already washing hands like crazy and are instructed to keep her away from germs.

Radiation Therapy each morning has become routine.  Transport picks us up with a gurney at 7:15 am and pushes us through underground tunnels to the building next door.  We wait for our turn while we snuggle and watch a movie or play a game.  Alanna is sedated and taken from me where they lay her in the machine and put on her radiation mask.  After they take her I run 2-3 miles around the hospital, grab some breakfast and go back and eat it in the waiting room.  They push her back to recovery about an hour after they take her and I join her while she wakes up.  If transport is on time then as soon as she wakes they push us back to our hospital room.  If they are late then Alanna screams of and on till they get her that she wants to go back to her room now!  While I do my very best to distract her. . .   Fun times!

After we get back from radiation Alanna absolutely must go to the playroom.  She can't eat breakfast first.  She must go play.  So we play.  Then we go eat breakfast.  Then we go outside.  Then we go to our room and play.  Then we go outside.  Then we go to the playroom.  At some time I beg to eat lunch which she eats two bites and then wants to go play again.  (I think yesterday I convinced her to play her Ukulele quietly while I ate lunch).  She continues playing until I beg her to go to sleep at 10pm at night.  She does eat a 9pm snack which I think she considers her dinner.  Our nurses are having a hard time finding us.

Yes, food fight.  So much more fun than eating it.

So, the music therapy teacher gave Alanna a Ukulele yesterday.  Alanna was very shy when she got it and immediately wanted to go back to her room.  It was a little sad because we all thought Alanna would love it.  However; when Alanna got back to her room she sang "Let it Go" with her ukulele and played it all day.  She even slept with it last night.  I did record her lovely singing to share with the music teacher who was very touched that Alanna loved her gift so much and it brought her so much joy. We also went down to the hospital conference room several times yesterday so she and her Daddy could put on concerts.  (Daddy had his guitar that he recently got for Christmas).

Radiation Therapy Begins!

This week we finally moved forward!

The week started on Monday with another MRI which showed the meningitis infection still present in Alanna's brain.  So Tuesday was another Lumbar Puncture which showed significant improvement in fighting the infection.  However, the infection is still present but believed to be on its way out.  We will do another Lumbar Puncture next week to see if the infection is still going away.

And on Wednesday we moved forward and started Radiation Therapy!

Alanna did great!  Katie from child life rescued us with a new book when the Land Before Time movie we brought turned out to be too scary.
Alanna was very nauseous after treatment but on Thursday before we went to radiation therapy she got some anti-nausea medicine (Zofran) which did the trick and she was fine.  And energetic! (On Tuesday she got her first blood transfusion since her hemoglobin count was low.  She needed to be as healthy as possible to start radiation.)  This week, I think mainly to new blood she has been very active.

We also got a lot of mail this week :) Thank you so much!

Dolly got to help with an EKG :)