November Update

Hello All and Happy Holidays!

It's been a while since the last update and we know that means that things are going well for the time being.  In fact, Lindsey and Josh moved home the day after Thanksgiving.  She was feeling strong enough to handle being back home and the neighbors and ward are stepping up and taking each day to check on her while Josh is at work.  She sleeps into late morning and Josh is trying to finish work by 4 so I think it's a good move for them.  It's time to reconnect with life before the illness and she said it felt so good to be home.  She has been making trips to shop and get some dinner and we are all so happy to see her in a good place right now.  Josh and Lindsey went to Walmart last week and she was laughing at the experience of driving around the power cart.  I had to do that when I was in a cast last year and trust me, they don't go fast.  The person you are with can walk faster than those carts go but even with that Lindsey ran into a toy display!!  She had the biggest smile on her face telling us all about it!  She had to have her hair cut.  The radiation has left 2 areas on the back of her head bald from the base to the crown.  When you combine that with the spot from the brain surgery and the spot from the previous tumors it's quite a do!  But you know Lindsey!  And she can smile at the uniqueness of the entire situation.  Her sister made her some awesome knit caps which she constantly wears.  Josh made the mistake of suggesting a wig (way to go son) Lindsey said it says 'cancer' all over it so there wasn't anyway she was wearing one.  Her feistiness definitely has helped her thru this season of trials.  We love her so much.

I want to send a heartfelt thankyou to those of you who have already made donations.  It has been touching and brought us all to tears with your generosity.  Josh was presented with a $49,000 bill last week and he was so upset and out of sorts and then he received a donation from a person who absolutely reminded me of the story of the woman giving her last mite.  She doesnt have it to give but gave anyway and it made all the difference to the kids.  I know those of you who have given have dug deep and thank you again, from us all. 

If you are looking for a way to help someone this Christmas, here are a couple of suggestions.  One, to head to the blog or FB page.  www.forlindsey.blogspot.com or "For Lindsey" on FB.  You can read her story on the blog and make online donations there.  Also, it's been suggested that "Angel Trees" be set up at different locations.  You can attach envelopes with the online information for making donations inside and include a brief of her story.  Ask your Ward or religious congreations if that is a possibility or a more general domain such  a convenience store.  Please don't include any addresses or phone #'s, just the online information.  I know we can continue to give the kids some relief from the ever present medical bills.

The next step:

Lindsey meets with the radioligist on Tuesday, Nov 30th to evaluate her current condition.  From there they will setting up the appointment to do the next MRI to determine how the tumors have been affected by the radiation treatments.  Please remember to keep the kids in your prayers.  We see the miracles of those blessings every day. 

Thanks everyone!  We love you all.

Julie.

Remember the reason for the season.

Oct 29

Hello All,

Well, here we are the end of October and Lindsey had her last radiation treatment on Tuesday, October 26th!!!!!  We are all so thankful to have come this far.  It's been quite a journey to this point and not that we are anywhere near being done but we are happy this segment of treatment is finally over.  As you may recall from the last update, they had to delay treatment for over a week because Lindsey's white blood count had dropped to very dangerous levels.  They waited to see if her body would recover on its own, which it did after that week.  Normal count is around 5, hers at its worst was 1.7, after taking a break from the radiation for a week it was up in the 3's, which was very encouraging.  The radiation left burns from her ears down to the tip of her spine.  Also, she developed aneroxia plasia, which was brought on by the radiation.  We know that she has already lost alot of weight but she dropped even lower with the reduced blood count.  It is a vicious cycle where the nausea brought on by the radiation causes the person to not want to eat because the body will just expell it.  Anorexia plasia means that even though Lindsey might not be feeling ill on a given day, her mind and body are not used to wanting to eat food and not have a negative reaction.  When her uncle, a licensed dietician, told her that she should be on a feeding tube, "Lindsey the Determined" stepped up to plate to not let that be an option.  She is now eating even when she doesn't want to and hasn't lost anymore weight.  She eats whatever sounds good, which includes alot of Taco Amigo extra crispy, extra salty french fries!  I guess you can't get alot more fattening than that!!  We are definitely glad she is eating.  The nausea has calmed down a great amount which is a huge blessing. 

On Tuesday, at her radiation appointment, patients get to ring a large brass bell mounted on the wall in honor of their last treatment.  Josh was on hand and video'd the ringing of the bell and I will send that out when Josh gets it to me.  You may also check her FB page of Lindsey Kae Robinson Karr, as Josh will post it there as well.  Also, in honor of her last treatment and to have a laugh at the expense of the radiologists, Lindsey had Josh create a faux tatoo on her lower back which was a lochness monster at the rim of her pants and below that the phrase "Crack kills" on her bum!  You can imagine the radiologists faces when they saw that!!  If you don't know Lindsey well, or are family who have never met her this will sum it up for you.  On Tuesday I sent her a text following her treatment telling her congratulations.  Her response was this "Thanks Julie!  I'm pretty spanking happy today! I love my life!!"  It made me cry when I received it and it made me cry to type it here.  Can you believe that?!!  When you think your troubles are overwhelming I want you to remember how Lindsey feels and move forward.  We all may not have specific time lines and achievements such as Lindsey but if a girl who has gone thru what she has can say that she loves her life then there is no excuse for the rest of us.  My daughter Jessica, who lives in Canada, said "I know what is going on and what she is having to deal with it but when I talk to her on the phone you would never know what she is going thru.  She is always so optimistic and happy"  Carpe diem everyone!  Seize the day!!!