More Tender Mercies!

Emily went back in for another treatment and did very well.  Her port is healing greatly.

  She is not liking having to not go to school, church, or shopping, but we want to keep her healthy and their is a lot of sickness going around right now. Thanks to all those who take time to think of her needs and make this as fun as possible. We have a large Scavenger Hunt book for the whole family to stay in and enjoy. Mom and Emily had a fun tea party will the real China set that was brought to her. Lillian and Veta went and made a cake with Bishop's wife while we took Emily down to PCMC for her last treatment. PCMC knows to get out all the dry erase markers for Emily when she comes and they love her little messages that she leaves. Thanks again to all for your time and concern not just for Emily, but for our family as a whole. It is amazing what a toll something like this takes on everyone. Life is full of blessings all among the trials and I am thankful to be able to see them.

SNOW MUCH FUN!

 

I have to admit that when the kids went out to help Dad shovel I was happy for the quiet and that I could get Emily to finally lay down for awhile.  However, after almost an hour and it being a school night I was beginning to get annoyed and then I looked outside to find all of the above and more.  Had I have made them come in and wait until the next day--their fun would have been washed away in the rain.  Sometimes we need to take time to smell the roses and laugh away the mundane of life.  I am grateful for not making the fun stop and instead capturing the smiles on camera.

School, work, Emily feeling tired, and everything else in life that comes no matter what still came the next day, but who knows when another snow time like this will come.

I must take time to thank my Heavenly Father for these tender mercies that make everything worth it.

Emily's trip to PCMC

Emily was a little trooper and smiles all the way.  We met with Oncology on Wednesday and learned more about her plan of treatment and about LCH--her new for sure diagnosis.  She had fun drawing on the board.  Then she got to go into Same-Day Surgery for Port placement, Endoscopy, & Colonoscopy with biopsy on Thursday.  We were scheduled for 11:30,but didn't get in until 1:30 due to complications with the patient that was before us.  She was already asleep when they came out to get her--so she went back still happy and already sleepy. All went very well and we were able to head home that night at 7:30.  No pictures were taken until we were home and Emily was placed at her new home on the couch for now anyway.  Mom was a little worried as the surgery took the full time and oncology wanted to see me again before leaving.  Luckily they just wanted to give me a little more information on her Port and things to watch for.  This will be a crazy year once again for us--but I don't think we would know how to handle life if it wasn't crazy with something new.  They are putting her back on Prednisone (a steroid) and also she will be on low doses of viblastine chemo every week for the first 6 weeks then we will possibly go to every 3 weeks up to a year.  Until we know how she responds and reacts to treatment we will have to go to PCMC for her care--then if she does okay they can eventually look at moving her closer to home for treatments.  We are going to be able to get to Salt Lake on sleep mode after awhile-ha,ha,ha.  So that is what we are going to be doing for awhile

THANKS TO ALL OF YOU FOR YOUR THOUGHTS, TIME, COMPASSION, FASTING, & PRAYERS--it truly is what gets us through it all.  Family and Friends are truly a great blessing.

WILLIAM TURNS 3



Yeah--William turned 3 yesterday. We finally were able to convince him that he still had to stay in Nursery for another year--he thought he could go straight to Sunbeams in Primary. Poor little guy. We told him they would sing to him and he got mad and said you can't sing without a cake--we then had to convince him that you can sing happy birthday without a cake. He is quite the little character and we all adore him. Sometimes it is hard to say No when he looks at you with those big blue eyes and his big cheesy grin.  The bike on his cake didn't last until family came to sing--he was so excited to play with it. Veta found him licking it clean of icing so "I can play with it--Mom said" only thing is I didn't say, but after seeing his cute face with green icing above his lip how could I say no  He had a great day telling everyone, "I 3 today."  He just needed a little more practice on blowing out his candles.  He keeps me laughing.

Emily's New Diagnosis--Heidi's rambling as I still am processing things

My mind is in quite a whirl lately.  Our trip to PCMC in November brought some questions of a possible new diagnosis for Emily, but doctors couldn't agree and were unsure.  So I was able to keep things in the back of my mind and still hope that maybe they really hadn't seen anything new--or in actuallity realized that something was there all along, but very slight and saw more positivily as they went back to look--However, a call on Friday from a very special and caring doctor came news of "yes we have to say we have a different diagnosis".  Since then I find myself doing my best to be strong and remind myself I will learn more (and not to worry about the unknown), but then when noone is looking the tears just come with no warning as the questions of the unknown haunt my mind.

Emily's new diagnosis is Langerhans Cell Histiocytosis.  It is when what is known as langerhans cells(which are immune cells) over produce.  So since these cells are to help the body fight off infection when they overproduce they start fighting the body--so in other words her body  is attacking itself.  So far we are only aware of her bones being effected, but they will test everything this week to make sure this is correct.  Bones are a low risk of this disease where other organs being effected can make it high risk.  This is all just what I am slowly learning and hopefully more answers and knowledge with come with our visit with her newly appointed Oncologist on Tuesday.  Yes I can say the word--Oncologist (a speacialist in cancer).  This disease has some similiarities of cancer--but it is not cancer.  However, one of the treatments for this disease is low doses of Chemotherapy.  I think that is where my haunting questions come from.....

*Will she lose her hair?,,  Will she be sick all the time or more often?,, Will she lose weight and lose so much of who she is?,,  Will she have to miss more school than she already does--this is big because she loves school so very much?  those that read this blog will be the first to hear these questions since I have tried to leave them in my mind so as not to worry Jeff, Emily, or anyone else in the family--but sometimes you have to let things out so they do not consume you and really it does no good to worry about things that might not even be a concern when we get more answers.  So thanks for being a sounding board and letting me lose some of my tears so I can once again put on a happy face and smile through this new challenge.

I am just so very thankful for my knowledge of the gospel of Jesus Christ and can find comfort in knowing that he is in control and all will work out for the best.

I also want to take a moment to thank all of you that fasted and prayed for her and her doctors on Sunday.  I told Emily about it and she said if everyone could do this for her she could do it too and she could take her medicines after lunch and breaking her fast. 

You are all amazing examples and thanks so much for your love and support--I know it is what gets us through.