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 :)

Chase Child Life Bruin Run/Walk

Last week on Sunday, April 29, Chase Child Life held their 19th annual Bruin Run Walk held on the UCLA campus.  I was quick to sign up for this 5K.  To run for my daughter with so many others who were running for childhood cancer.  All of the proceedings for this race went directly to the Chase Child Life program at the hospital. 

This was last Thanksgiving where Alanna won her first medal running in the kids race.  I can't wait for her to be able to run with me again someday.

I am so very grateful for child life.  To the entire staff for being here to help my Alanna through such a tough time in her life.  For the playroom that Alanna loves and the distractions (toys, games, puzzles, arts and crafts, etc) they bring her.  I am so grateful for the many times a child life representative comes with Alanna to a procedure to offer her emotional support and a distraction while she is so scared.  Oh how I wish I could always be with her through every little step of the way but when I can't she has Katie, Karleen, Milli, or Megan there to help her.  Thank you ladies!  I wish I could do as much for you as you are doing for Alanna.  If Alanna could she would go to the playroom all day and all night.  She asks to go to the playroom all of the time and goes multiple times throughout the day. 

Running on Sunday meant so much to me.  I was able to pray the entire 3.1 miles, offering my gratitude for Child Life and begging the Lord that my daughter will be a cancer survivor.  The energy running with others who have had children fighting cancer lifted my spirits so much.  There is a lot of support for us!  After the race all of the wonderful child life ladies filled my bag up completely with toys and crafts to take back to Alanna.  We were very entertained that day!  And when I returned Alanna was still sleeping in so she didn't notice my absence at all but I am grateful for Daddy who came early to be with her.