End-of-summer Update

Hope all is well with all of you & your families & you got to enjoy your summer! Just like most of you, August was spent trying to grasp every last minute of the "summer that never was." Unfortunately, that also meant going back to school & the start of a routine again. Wah...........


Tyler started high school at Libertyville High School & loves everything about it except for the homework. He plays soccer for their sophomore team & will go back to travel Eclipse soccer for the winter & spring sessions. Alyssa is now in the 1st grade. She loves it too & looks forward to it every day. She's just like me - a social butterfly & loves playdates every day. Alyssa is finally gone for a full day, leaving me MUCH NEEDED to myself to get things done! Steve continues to travel every week & covers the midwest sales region. He tried to stay home one more day a week to do office work, which is greatly appreciated & really helps when I am having a bad day.


Prior to school starting & before I got my glasses for distance, we took a weekend trip to Wisconsin Dells. We went with my relatives & stayed at The Wilderness on the Lake in 2 rooms for 18 people. What a blast! A comical part of the trip is when I was walking around with my camera & instead of taking pictures of my family - most were of strangers! Funny how the kids look so alike when their hair is wet, although it didn't help that I could barely see them! One man was so flattered that I wanted photos of his son & daughter. Little did he know!!! (ha ha)


Medically, things have been going a bit downhill lately. Following May's surgery, my vision was progressing well for about 8-10 weeks & then I noticed things to be more blurry & my close vision more out of focus as well. I saw my eye doctor, Jack Cohen, August 7th & he confirmed what I was hoping was not really true. The macular hole remains closed & the large lasered area is healing well also. The problem lies in the optic nerve tumor. The change in the size and shape of this tumor is what is causing my vision to change. He told me to proceed with corrective glasses for distance & close vision. However, they will not work well as most of my vision loss is not correctable. I got my glasses the following week & again this was confirmed. I see great for about 10 feet & then it's very grainy & I have many blind spots even within the close vision range.


Two weeks ago, I attended Tyler's high school soccer game & couldn't even locate a single player from our team. It was very frustrating. I'm going to try binoculars the next time. I rented an overhead projector-like scanner to use to read & see photos, yet am trying other products available before I choose the best equipment/magnifiers that work for me. I am working with the State of Illinois Department of Rehabilitation (vision department) with a woman named Elizabeth. She is also legally blind - which is how they diagnose me. She visits about every two weeks & developed a plan for me.


So far, I learned most of the braille alphabet & some basic words. I am finding that I'm a visual learner - not auditory or tactile (I HATED IT!). Next week, I'll try the walking cane. I have sweaty palms just thinking about it. I get around familiar places so well, but would need to use it if I was travelling somewhere strange at night (unless I had an escort so I wouldn't walk into anything). As a matter of fact, I went to Great America in August with my cousins and all the kids. Once it was dark, I was tripping a lot more & very uncomfortable. On the way to the parking lot, I walked straight into a handicap sign & went flying over a curb! I cut myself in several places and got a real bad headache. They really need to watch where they place those signs (LOL), although I did get a good laugh out of it.


I'm again looking for a chemo trial. Sutent doesn't appear to be the answer & hasn't helped anyone's eyes as of yet. It's also been found to be very toxic & I already feel bad enough without adding in another drug. These past two months, in addition to worsening vision, I've had an increase in nausea, headaches, dizziness, numbness on my left side & general achiness. I've also lost 10 pounds & am no more active, nor had a change to my diet. Recently, my lab work showed inflammation of the pancreas, which is probably contributing to some of my symptoms. My low potassium is probably causing some numbness as well as achy joints & fatigued muscles. I had an MRI of my abdomen, brain & ear on 9/10 and go next week (9/16) to get MRIs on my complete spine, as well as repeat labs. By next week, I should have some answers. On Thursday, I see my neurosurgeon & internist.

On a positive note, I have some trial software I'm trying called ZOOM TEXT which enlarges the computer print & will even read my e-mail to me. It costs about $1100 to purchase & I have about 40 more days to try it. As for reading, I can't read large print yet, but have read 5 books on the Kindle by using the audio & following the words. I love it! Thanks again to all who contributed : )

Sorry this is so lengthy. There has been a lot going on since my last entry! I'll try to blog more often & say less. Continue to keep me in your thoughts and prayers.

Thanks again, Kim

Vision Update

July 26th
Well, I did go see the low vision specialist. She recommended progressive glasses (tri-focals). I ordered them that day and just picked them up on Friday. Oh my God, how nauseating. Obviously, I still have many blind spots and am having difficulty finding my focal point for far and near vision.

They told me to try them for a few weeks, yet I think I'm going to trade them in for distance only and get a separate pair for reading. Say your prayers the vision with these glasses starts to work better. I know I am blessed to see at all, but now I'm greedy and want to see the world again like I used to.

Today I received an ClearView machine at the house for a week long trial. It is similar to an overhead projector all in one. It can magnify up to 50 times the size of pictures and print. The screen is 22 inches and allow me to adjust the magnification very easily. I can also now see the words better on my Kindle. Yippee!!

Lots of changes to get used to these days. As always, all your thoughts and prayers are greatly appreciated. Going to try a movie tonight with one of my neighbors. Hope the new glasses work well.

July 13th - late entry
Today Steve and I went to see my eye surgeon. My vision today is 20/240 and still unchanged from 4 weeks ago. The good news is the macular hole remains closed and healed. The optic nerve lesion is unchanged. The large lesion has shrunk, scarred and no longer bleeding. The unfortunate news for me, is that he felt that since my vision was unchanged it may be the balance of my improvement.

He said the neurons would continue to redevelop yet he couldn't guarantee anything . Steve and I decided I need to remember that I heal slowly and will remain optimistic. He recommended a visit to a low vision specialist. I have blind spots still in my mid vision. I return for my next check up in 8 weeks.

Kim Gillespie

WOW ! Here is the latest. On July 27th we had a huge turn out for the 5K4Kim Walk at Blackwell Forest Preserve. We can not thank everyone enough for participating in this event. The weather was great and everyone enjoyed the walk. Kim and I want to give a special thanks to all of the sponsors who generously donated for the event.

Restaurant.com
McGrath Lexus (Westmont)
Sound Sales Ltd. (Elmhurst)
River North Dermatology (Naperville)
Panera Bread
Glen Saniford (photography)

And of course we just can not express our gratitude enough for the ladies who put this all together. We know it took many hours of their busy lives to pull off such a perfect event. Thanks to Jeryl FoulkesValdez, Diane Tyriver Lipuma, Missy Poulos, Julie Foulkes Piel, and Denise Kenston Blaszynski.

The money raised by the walk will be a tremendous help for us with all the past and future medical bills. Again, thanks to everyone for your time and concern for our family.

Many of you say that Kim is an inspiration to you, yet she could never have gotten through the many years of medical problems without all of the phone calls, e-mails, visits and thoughtful gifts from her friends and family. Hopefully she is going through the final phase of the post surgery recovery. The gas bubble that was inflated in her eye to help the healing process is now started to break up and should be totally gone with in a few weeks. We are hoping that after the bubble is gone that she will start to gain better sight and we can get back to a somewhat normal life.

Thanks again for all your thoughts and prayers

Steve

Photos from 5K4KIM...

Still improving...

I returned to see my eye doctor last Monday, June 15th & came home with good news. He was very impressed that the macular hole has continued to remain closed. He was also highly impressed that there was no change in the size of the optic tumor. However, there was some bloody drainage around the lasered area, yet he feels it is 60% healed so far. The floaters I see are a result of the drainage. Unfortunately, although he is impressed, I am still frustrated that the gas bubble size is unchained from my last appointment. That continues to cause me trouble walking into objects below chin level. I also have very bad night vision. This should all get better when the bubble goes away. As for restrictions, he told me there are none. So, I am trying to get out of my house a bit more these days - moving slowly, of course! This whole healing process should take another 1-4 months.

I'm glad to see the days getting sunnier, as I feel I've been living in the dark! Hope everybody enjoyed Father's Day. Looking forward to seeing those of you that will be attending the walk this weekend! Thank you again for all the help with meals, personal assistance for myself & just general care for myself and the kids, especially with my traveling man... I could not have done it without you all.

On another note... the last month has been busy for the family. Tyler graduated 8th grade. Alyssa graduated Kindergarten and performed in her first tap recital. These are both on videotape for me to view when my vision is better!

Things are lookin' up!

I saw the doctor again today. He said that the bubble in the last 10 days has gone from 50% to 25% and that I no longer need to keep my head in a down-facing position. You have no idea how happy this makes me!!! He said that I should be starting to see more and more over the next few weeks as the bubble completely dissolves and the bloody fluid gets reabsorbed. I was so shocked that I could actually see the eye chart on the wall. I couldn't actually see any letters, but I could see that there was a chart there - major progress!!! As a matter of fact, I can now see from chin-level up, although things still remain blurry and distorted (due to bloody drainage, the bubble and trauma to the retina). I still continue to have night blindness. It's like my house is a funhouse at night. The doctor says this is very common, which made me feel better.

I follow up with him again in two weeks. In the meantime, he told me to move slower & continue to use help. I am now using a sippy cup because I spilled three glasses of water yesterday!

As always, I'd like to thank you for all your "meals on wheels" (they've all been delicious and well-received by the kids) and help during the day. Special thanks to Brenda Shinn for getting Alyssa and I all beautiful for Alyssa's recital on Sunday! Thanks also to everybody that is signing up for the walk in June. If you aren't familiar with this, you can view the details at www.wecare4kim.com

Slowly but surely...

Kim visited the eye doctor again today. He says that she continues to improve and that approximately 50% of the bubble remains. He told her that she could keep her head up 50% of the time now (woo hoo!), but during the other 50% it has to be down ALL THE WAY (like when she's in her special chair). He said her vision will continue to improve, but slowly. She will still need help for about a month he estimates (though not 24/7 as has been required up to now). We will be adding more helping times to the schedule next week...

Kim wanted to thank everyone who has come over to help or brought flowers, great treats & dinners! A BIG thank you to Angela Nickel for planting flowers in her outdoor pots.