Medulloblastoma

Our dear Alanna is diagnosed with Medulloblastoma (childhood brain cancer).   I am saddened by the treatments she will have to endure.  However; I know she is a very strong willed child and not everyone can make it through something like this.  But I know Alanna can, she is and has always been a true fighter.

What's next?  She has a Lumbar Puncture scheduled for this Monday April 2, 2018.  This is similar to an epidural.  Spinal fluid will be taken out of her spine so that it can be studied at the molecular level.  This way they can find out how far the cancer cells have spread.

If there are cancer cells spread to her spine then she has a very aggressive cancer.  She would be checked into the hospital for a very long time and be given extensive chemotherapy treatments.  They also will take some of her stem cells and save them for her for later when they can give them back to boost her immune system.

If there are no cancer cells in her spine then it is a lower risk cancer.  In this case she would check into the hospital for 6-7 weeks where she will be given radiation treatments five days a week.  After the radiation treatments she would be able to go home and then go to the hospital one day a week for 9 months to receive chemotherapy.

She needs physical and occupational therapy to restore her mobility.  She does not need speech therapy.  She passed the audio test with flying colors.  And she is still her brilliant self.  She will have a central line placed  so she will not longer need the IV lines.

As I was talking to her day I understood a little more of how this tremendous trial is part of God's plan.  First, a little background information:  Steve and I tried for five years to bear a child.  We couldn't.  God's plan had been for Steve to get his MA at the University of Connecticut.  He worked as a teacher's assistant teaching Spanish class.  He was able to get CT state insurance through that job which covered an extensive list of medical opportunities.  One thing that was completely covered was fertility treatments.  Steve and I were able to go through what we thought at the time was our one big trial for life: bearing a child through In-vitro fertilization.  It was hard but God was with us each step and just before we moved to Southern California we became pregnant with our daughter after only one round of In-vitro.  I know that the things I learned from this trial has prepared me for today.  Because of the conversation I had with her:
Alanna, "Mommy why do some grownups have a hard time getting babies?"
Me, "Some grown ups like me and Daddy's tummys don't work right and they have to go to the doctor.  I was poked and bugged and had to go to the hospital to get you in my tummy.  But you were so important and I wanted you so badly I did it.  And I am so glad I did."
Alanna, "I hate it when they poke me and bug me."
Me, "You have something called brain cancer that makes you really sick.  The doctors have to poke you and bug you so they can get rid of the cancer.  But you are so important and God wants you to get better."
I saw the light shine in her eyes as she began to understand what is happening and why.

We don't always understand God's plan but I can see God's miracles in my life.  I have been prepared all my life to be by my daughter's side as she fights brain cancer.  God has prepared me “. . .line upon line, precept by precept, here a little and there a little. . .” (Book of Mormon, 2 Nephi 28: 30).  God has slowly given me harder and harder trials all my life until this one.  Alanna is a very special little girl, we had to be strong and fight to bring her here to Earth.  She will need to fight now to be rid of cancer.  I have faith that she will do it.  God has prepared her and me so that we can grow in our faith in Christ.

The doctor called Alanna's condition, "Curable".  Let us have hope and faith now.  She is in the best medical care.  Curable will be a complete reality.

Thank you for all of your prayers, love, packages, visits..  We have been so grateful and touched by the response from our community.

Love,
Emilee

Alanna's Miracle

Our request for prayers to ask for a miracle for Alanna has had an enormous response.  The outpouring of love, faith, thoughts, and support from our community has been the most touching experience of my life.  I have felt the spirit of the Lord with me every step over the last 24 hours.  I have not been afraid and I am strengthened beyond measure.  The gift that each of our friends, family, community members, and people whom I haven't even met (who in my opinion are not strangers to me because I have felt your strength and love through this experience) has allowed our daughter to continue living her precious life here with us longer.  May each of you know what has collectively been done.  Together a miracle was asked for and God has listened.  I hope to be able to have many more experiences with each of you.  Thank you and all of my love goes to each of you.

I know without a doubt Heavenly Father Loves Alanna very much.  He has given her so many friends to love her enough to get her through this particularly difficult time.  He cares about her as much as he cares about each of us.  Alanna is a Child of God and loved beyond measure.  I believe our Father in Heaven loves each of us this way.  To see a miracle occur in this manner proves to me that God is there, that he listens, and he has the power to heal.

Alanna's surgery began at 8 am.  We were told very little until finally at 4:15pm her surgeon called to tell us, "All went well!"  She had been in surgery for 8 hours.  The doctor was able to remove all of the tumor that he could find.  Before she could be sent back to us she would have to have an MRI so they could be absolutely sure that all of the tumor was gone.  We have not been given the results of this yet.  We were not able to see her till much closer to 8pm.  We had never been away from her for so long.

When we were reunited, Alanna was obviously exhausted but she was still being feisty with the hospital staff!  She was telling the nurses to, "Go Away!"  She is still 100% Alanna!    Oh how much I love being her mom and even more, how happy I am to still have her with me.

The hardest thing was saying goodbye to her not knowing if she'd still be herself when and if I would see her again.  The prayers, messages, and support from each of you lifted me through those 12 hours.  The spirit of God was so strong.  Heaven encompassed us.  God is real.

May no other parent or child ever need to go through this.  But if you do know that the God and so many loving people who are willing to be His hands will be there for you.

Prayers for Alanna's recovery are welcome.  We still have a long way to go. Thank you.

Prayers for our sweet Alanna

Sweet Alanna has gone through a whirlwind of events this past week.  Your prayers and fasting are requested as we have faith in Jesus Christ that her health may be improved and that she may heal from her afflictions.  She needs her community whom she loves dearly.  I know many people have touched her and care about her.  She loves her family, friends, leaders, teachers and almost any stranger she ever comes in contact with.  She has always talked to everyone she sees and loves the attention that each person gives her.  Please pray and think of her at this time, especially on Friday as she goes through a 6-7 hour surgery to remove her brain tumor.   

For those of you who would like to be specific in your prayers:  Here is the information we have up to this point:

Alanna has a brain tumor at the base of her skull it goes deep, almost to her brain stem. It covers her cerebellum and perhaps some places where there is spinal fluid. At it's biggest it is 4cm in diameter, the size of a tangerine.  The cerebellum is the part of the brain that affects coordination and balance.  The surgeon thinks she has had this tumor for years and it recently grew big enough to affect her.  She at this point has no balance and will fall if she trys to stand or walk.  She was experiencing massive headaches that induced vomitting.  Just before we took her to the ER on Saturday March 17 she had experienced a severe headache that had lasted 12 hours.  She was helicoptered to UCLA Mattel Children's hospital at midnight.

The surgery will be Friday. To give the steroids more time to reduce swelling in her brain (which has been successful so far) and so the doctor can schedule his whole A team to be present. The surgery will take 6-7 hours. He will schedule it around 9 or 9:30am.

He will take out as much of the tumor as he possibly can. If he gets to close to something or it doesn't come easily he won't force it. That's when future surgeries or radiation comes into play.

She gets one incision on the back of her head down to her spine. Very little hair will be trimmed. He removes a small circular piece of the skull and part of the C1 vertebrae to get into the brain.

The day after surgery there will be an MRI to see if all of the tumor is removed. If it is not he may do another surgery soon after.

She will probably need a blood transfusion. Because she is little and tumors are a bloody mess.

Risks are infections, spinal fluid may leak, may not get the whole tumor, and cerebellum mutism (happens only in children-they become emotionally libel, difficulty with speech, extra emotional and it usually goes away by itself over time). Risk of anything major is less than 5%.

After they remove the tumor they will take some tissue to analyze it. The analysis will take one week. They will find out what kind of tumor it is. That's when they find out if it is cancerous or not.

She may need speech therapy and rehab afterwards. He thinks she probably will need rehab since she is having so much difficulty balancing and walking.

As you can imagine at this point she is emotionally distraught, does not understand what is happening, and screams at all of the hospital staff that enters the room.  She is frustrated with the many things she can not do that were so easy for her to do not so long ago.  She is most at herself when she is playing with her toys.  They are a welcome distraction from what is going on and that is when I see her silly sweet self still shining.  I'm thankful to be at a hospital that is providing toys and grateful for the toys that many of her friends have sent her.  She is also cheerful when she watches the videos her teacher sends her.  She likes seeing people whom she knows and loves.

Thank you for your support and love,
Emilee & Steve

Here are some pictures if you'd like it to seem even more real:

March 17

 March 18 Midnight

 March 20

 March 20