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!!!

Oct 10

Hi all,

A week ago last Friday, (Oct 1st) Lindsey went to her radiation appointment in SLC, which always takes place at 8:30am. She had completed 17 of her 25 treatments and has been counting down the remaining 8. They did a blood test to check her white and red blood cell count and unfortunately, her white count was dangerously low. They sent her home with the understanding they would retest on Monday and hopefully, the count would recover on its' own. Remember, this was after 5 consecutive treatments so it was a strong possibility it would. On Monday, however, her count had not improved. We should all have a white blood count of around 5. Lindsey's was at 1.7.

A decreased WBC count is called leukopenia. It can result from many different situations, such as chemotherapy, radiation therapy, or diseases of the immune system. Counts that continue to rise or fall to abnormal levels indicate that the condition is getting worse. Counts that return to normal indicate improvement.

They ceased treatments for this entire week and tomorrow will retest her count. We are praying her levels will increase which will tell us the radiation is working. Please keep her in your prayers. I had several people tell me they were fasting in her behalf today. Many who don't know her and involved their entire families. It's such a testament to me of how blessed we are with people who care.

Since having the brain surgery to implant the shunt and with the couplation of the tumors up her spine, if Lindsey sits up for any length of time she gets severe headaches. This means she has been prone for most of the last couple of months and stays in her bed except to go to radiation. On a happier note, yesterday, for the first time since this ordeal began, (with the exception of her speech for the Pediatric Brain Tumor Foundation) she wanted to get out of the house and go for a drive with Josh. She was able to sit in the wheelchair and go to Costco (of all places - but Mark was thrilled they stopped to say hello. Needless to say he was very surprised). It doesn't take much to exhaust her so it didn't last too long but it was a very, very good day for Lindsey to have.

Thanks everyone for your continued love, prayers, and support. We love you all.

Julie



Photo taken April 2007