Thursday, June 10, 2010

Fairy Tale and Fog

This is Becky.  Sorry I haven't posted since Saturday - life is really a blur.  We can't decide if we're living in a fog or a fairy tale. Sometimes it's one thing, sometimes another.  It almost feels like we've lived 3 years in 3 weeks.

I'll start with Sunday.  Sunday, as you know, Tara went to girls' camp with her Dad and learned what the supposed odds really are about this kind of brain cancer.  Tough news for her and for all of us.  Sunday morning was a tough one for me.  I keep reciting scriptures in my head from my prayer rug that a friend gave me, "I will not leave you comfortless, I will comfort you."  "I can do all things through Christ who strenghteneth me."  I am holding God to those promises and I pray for them regularly; sometimes several times a day; depending on  if I am losing it at that moment or not.

Sunday I went to church with Nate & Rachel.  It was hard to walk in and see all those loving faces who care so much about our family and they were all so sad; so of course, I was teary eyed also. As the meeting wore on, I was extremely glad that I was where I knew I should be.  I received such personal spiritual strength during that meeting that I have been carried through this week.  I am carried by that outpouring of the Spirit, along with all the other prayers I have been praying throughout this whole ordeal.  I KNOW that through the prayers of all of you people, I am feeling the Spirit and being uplifted throughout all of this; as well as our family.

Some of you have said that you're not sure what to pray for now that surgery is done and went so well. Here is what we were counseled Sunday to pray for; and I firmly believe that this is what we should pray for - we need to be BOLD in our prayers and call down the powers of heaven in Tara's behalf.  We CAN expect miracles!!  I lost track of all the miracles that have happened since May 14th.  Tara is a walking miracle and she is NOT a statistic!  She is Tara and she can make it through this thing.  People do.  She can be one of those PEOPLES who make it through this.  Like my sister said, whatever that percentage of people that lick this are, Tara has a 99% chance of being in THAT percentage!! She is young and strong and has, most importantly, has a positive attitude and sooooo much faith.  So, please keep praying and we WILL be bold in our prayers.  I know, there is God's will in all of this; I just pray that God's will is not to need Tara so desperately on the other side that He can't leave her here.  I really feel inside like Tara will make this.  All I have to do in the morning is wake up, look at her in her room with her smile on her face, and I feel better.  I think it's harder on all of you out there who can't see her smile in the mornings and know that she will be okay.  What will I do when she's married and Josh is the one to see that smile on her face in the mornings?  Lucky Josh!  I hope my heart can make it through the mornings then.  Mornings are sometimes a hard time - Scott & I wake up every day and have a brief fleeting thought that maybe this is a "normal" day, then that "other" feeling comes to our hearts.  Thankfully, every day that heartsick feeling is a little better and doesn't last quite as long and we get going on our day.  Tara removes all heartsickness.  All you have to do is look at her and know that everything will be alright.

I'm supposed to give a report on what we learned yesterday - I wish I could have Scott be the one to do this; he took the notes; but I'll try.  We learned so much. For an hour this wonderful doctor (radiation oncologist) educated us about our whole process.  I'll highlight a few details for those of you curious about the process.

Brain cancer does not spread to other parts of the body - can't remember why, but it doesn't.  No metastasis.

When you operate on the brain, you only cut exactly what you need to cut - other kinds of cancer, (stomach, breast, etc) the surgeons typically cut an inch or whatever they feel is needed, radius around the cancer part to safeguard the spread of the cancer.  In the brain, you can't do this.  You'll hurt too many things by taking brain tissue.  So, even though Dr. Berger "got it all" there are some errant cells in there we have to worry about.

Brain cancer goes by grades, not stages, of cancer.  So, when people think of Stage 4 cancer - this is not the same.  Grade 4 is still serious; but not the same as Stage 4.

Treatment involves radiation for 42 days, with Saturday and Sunday off.  She lays on a table with a mask on her head and is bolted to the table so she won't move out of that position she needs to be on.  This radiation process is very specific and complicated.  They tailor it to just exactly what Tara needs.  Radiation is only on the precise area where the tumor was located.  It lasts 10 minutes per session and she has to go to Barrows every day for this.

She will lose hair in the area being radiated  - that means she'll have what the doctor calls "an interesting haircut."  She may not lose all her hair, but will likely lose it where they are radiating.  That means her cute hats she will wear on her right side of her head!

Chemotherapy goes along with radiation at the same time. It's a pill and it again is very specific according to her body mass.  The drug name is Temodar. (I think).  Chemotherapy may make her nautious, radiation will make her tired; but she shouldn't feel too sick they keep saying.  There are anti-nautious medications which help.

After 42 days, she has a 4 week break from radiation but not chemo.  Then, she starts a double dose of chemo but only 5 days per month for the next 12 months after that.

For some reason, chemo and radiation are easier to deal with when it's in the brain and not other parts of the body. Thus, Tara may not be as sick as David Wayne has been, who, by the way, is a walking inspiration to us and everyone else!  His positive attitude and smile are infectious!

Fertility has been troublesome; but Dr. Shapiro (chemo oncologist) seems to think there is a good chance Tara's ovaries will work again after she's done with all of this.  He had many beanie babies on his shelf from previous patients who had the same chemo drug Tara is going to be on.  I cannot believe the decisions this girl has had to make and she's made them with such incredible faith - she and Josh both have.  They both just have faith everything will work out and they will be parents someday.

Clinical trials - Tara is trying to qualify for a clinical trial.  She will be on this drug (starts with an A) as well as the others at the same time as chemo and radiation.  It's administered through an IV.  50% of this test group have a placebo (the doctors don't even know if the patient has the drug or not) and the other 50% have the actual drug.  We are hoping Tara falls in the catagory of actually receiving the drug; but it's a coin toss.  I have decided within my own self that if Tara needs the drug; the Lord will make sure she's in that 50% that does not have the placebo.  This injection is very expensive (20,000 per injection) but is free because it's a study.  If the doctor sees something he does not like on her scan; it will be revealed to her if she in on the placebo or not and then she can get ON the drug if she was in fact on the placebo.

Enough medical stuff - we are sick of it - but I hope this answers some questions you all have been having.

As for the fairy tale, I cannot say enough about the joy that has been in this household as we having been living the fairy tale of the wedding this week!  Thanks to so many people that I cannot even start to name because I know for a fact that I will leave someone out, we are just overwhelmed with love so much that we are dumbfounded.  We kindof walk around with our jaws dropping and smiles on our faces.  I'll try to give you a little clue.....

Monday - let's decide we'll have a wedding!  Thanks to help, all the invitations are stamped and in the mail (3 different post office locations at least) by the next morning. Dinner is brought to our home; we all eat a very tasty healthy dinner and move forward.

Tuesday - meet with Dr. Shapiro - long day at doctors.  I type a list of what I think needs to be done for the wedding and then everyone else takes over.

Wednesday - supposed to have a day off doctors, but no luck.  We spend another long day at doctor's; come home to another very tasty meal - Mediterranean cuisine this time!  We were starving and it tasted soo good!  Last night it was impossible to be sad when I heard strains of "I can hear the bells" being practiced by Rachel and Jessica, and Tara and Josh were working on their wedding video - we had such happy sounds at our house!

The days are a blur so I give up on what happened what day; but here are some other fairy tale things - and I know I'm leaving out things.....

Flowers show up and brighten our home, cards, gifts, edible bouquets, healthy dinners, and loving people.  Loving emails, texts, hugs.... all these have helped.

It seems as if I need something, I just twinkle my nose and it happens - Tara's wedding dress needed a few tucks that came undone and a few minor adjustments - I call my quilting friends and within the hour it's done.

Our yard and back patio miraculously look perfect.  We were eating breakfast this morning at 6:30 - we hear the beloved sound of blowers and weed trimmers that are NOT ours working in our yard!!! You have no idea how incredible that sound is to the Schlappi Family's ears!  Keeping up with our yard is always a challenge we have faced.  We'll get maybe 1/4 of our yard looking good at once, but NEVER the whole yard at one time!  We felt so spoiled and so luxurious.

I haven't had to cook all week; other than breakfasts and heating up leftovers for lunch....

Our house miraculously got cleaned one day while we were gone - even the baseboards AND the laundry!

The list of what is being done by so many people for the wedding is too long to put down here; but as Tara said, it does make me cry just to look at the list and realize how very many people are giving their time and talents to pull this thing off by Saturday.  This all happens while we sit in doctor's offices.

Tara said she likes wedding planning sooo  much more than brain planning!  I told her, "you're not planning the wedding - you're WATCHING the wedding being planned and carried out before our eyes."  The pictures are breathtaking, the guest book perfect, the food is perfect, the lights will be wonderful, the list goes on and on and we did none of the work. I feel somewhat guilty for not helping; but am so overwhelmed with love.  Please excuse me if I haven't had time to talk to you long if you come to the door or respond to all my emails; but know that I'm just a little busy this week and I love you all so much!!!  Our lives will all settle into a routine, hopefully soon.

The good news today that is after we run and get more lab tests done; Tara has 4 blessed days with NO doctor's appointments (unless we try to squeeze an MRI in tomorrow instead of Tuesday).  She needs a break and so do we.  She needs a honeymoon!!!  She'll have a longer one in a few months during her 4 week break from radiation.  She and Josh are unique and very special.  Josh has to put up with alot - he has to put up with very abnormal wedding circumstances, and it's not always to put up with the Schlappi family - he comes through both with flying colors!

I have to run and get those tests done so I must quit - but please know that we all love you so much and appreciate all the fasting, prayers, and love sent our way.  You are all so wonderful and with this army we cannot fail!

We are so excited - our family starts coming into town in an hour!!!  YEA!!!!  We'll see many of you Saturday night and thank you, thank you, thank you!!!

Oh, as a little PS - I actually "felt" like working on my hand applique project at the doctor's office this week.  I haven't been able to touch it since last Thursday; but I picked it up yesterday; so I think that's a good sign that my heart will make it through this.


Heidi said...

Nothing like quilt therapy to help you feel better--along with good news for Tara!!

Heidi said...

I'm glad everything is coming together and that you have had so many angels taking care of the wedding plans and such. I'm so excited for Saturday!

Michelle said...

Love the blog and the updates. I haven't wanted to bug you because I know your ward and close friends are there for you. I'm here if you need me tho. Try to come to quilt group Monday, it will do you good and we would all love to see you. I'll pray for your family!
Michelle Hollis

Susan said...

You must know why you are so blessed. Two days ago as I sat in a computer professional development class, I was bored and checking my email when the lady sitting next to me glanced over and saw Tara's name. Surprised, she said, "I know Tara Schlappi!" Come to find out she was Tara's third grade teacher. She hadn't heard about the cancer. I pulled up the blog right there so she could see. Then she proceeded to tell me how she had lost hearing in one of her ears (I think it was the year she had Tara) and how caring you had been and continued to be so ever after. I could tell how much it had touched her. All this love comes because of your love and service to others. Of course, Tara is always in our thoughts and prayers, but I am also thinking so much of you. I know that Heavenly Father lifts us and strengthens us and that the peace that you feel must be incredible. You may not even realize it fully until it is all over. Where would we be without the comfort that the Holy Ghost brings?!

Much love,
Susan Dyar

Ingrid said...

Becky, we love you. What a wonderful mother you are!