Fun Week

Update from Lindz

It's been a good week. I had lunch with one of my favorite teachers from jr. high, Barb Green and my Mom's friend (and my friend), Mary Nelson. I saw my cousin Kelsie play a great game of B-ball (and they won!), spent the day with my Grandma and Grandpa Jackson on Friday... which also consisted of 3 hours at the pool. It was great fun. The highlight of my week was visiting Camp Wilderness in Lawson, MO. This is a camp I attended when I was younger, and I was also a counselor for many summers. This camp, the directors, and the counselors influenced who I am and it was there that I first excepted Jesus Christ as my Lord and Savior. I've included a few photos from my camp visit. Jerry and all the other counselors - thank you for devoting your time to this camp and to the kids. Thank you to all the kids at camp for the wonderful poster!

Lindsey's Happy List

This morning we had our first experience with seizures. Lindsey's smart... she shared tonight that she felt the first one coming on and plopped down in the hallway. I heard a little thud and walked around the corner to see her laying on the floor. The 2nd one occurred about 10 minutes later, while Bob and I were by her side. We asked the nurse about starting anti-seizure meds but due to the reaction she had last time (aka "crazy lady") the dr is hesistate to start them back up. We do have a emergency kit at home in the event she has a bad one. So in the mean time, you focus on what you can. You place a bell by the bed, you talk about what to do when you feel one coming on, you wear a strap around your waist so that one can easily hold on to it if Lindsey begins to fall, etc. The rest of the day was fine. Bob and Lindsey ran errands, visited the Grandparents, and went for a little swim.

We've taken her off the hydrocodone and switched to hydromorphone and reduced the dosage. The steroids are relieving some pressure so the pain has not been as intense. This has left Lindsey more alert, less drowsy, and tonight it seemed her speech had improved. This is most likely due to the reduction in pain meds, which probably had her mind in a rather "foggy" state most of the time.

While alert and talkative, we created Lindsey's "happy" list. This is a list of things she wants to make sure we do while she can.

1 - Breakfast with Dad and Todd(if she can get him out of bed) at Hyvee on Saturday mornings (while Hannah and Mom are at WW and Spin Class); Starbucks with Mom and Hannah after Breakfast with Dad, then Saturday morning stroll to the Lee's Summit Farmers Market

2 - Friday night concerts in Lee's Summit with the family

3 - At least 3 phone calls a day with her hubby, Greg; see Greg as much as possible

4 - Church on Sunday

5 - Aunt Nancy's whenever possible

6 - Time with relatives and friends

7 - Kelsie's weekly basketball games

8 - Pool party with LSCC College group

9 - Ice-cream, and an occasional special treat from Cold Stone or Sheridans!

Greg will be in town July 1 - 5.... that's one positive impact to the Happy List! We'll start creating many more.

Good weekend - Pain Under Control

It's been a good weekend. The pain is being effectively managed and Lindsey's weekend was in a more "normal" state versus sleeping most of the time. Of course there are still daily naps... wouldn't we all love to have that luxury? This weekend we visited the LS City Market, enjoyed the pool, had breakfast with Grandpa Jackson for Daddy Day, did a little shopping at Wally World, and then grilled out for dinner for Bob.

Bob is now home during the day with Lindsey as I have returned to work. Thank goodness Bob has an understanding employer who continues to allow him to work when he can.

I'm off to my weekly "therapy" of Hot Yoga at the ZenZone with Hannah....and when they say "hot," they mean HOT!

I do have one story to share about how God continues to work in the most interesting ways. While at the Farmers Market on Saturday, the girls and I lamented over what to purchase from the Amish booth- some of their to die for wonderful bread or Apple pie. We debated this for several minutes and opted for the bread. Next we planned the Father's Day menu, which included a discussion about pasta salad for Bob because he loves his pasta salad. Okay... we end our morning shopping and head home. That afternoon, I hear a knock on the door. It's Mary T with, no kidding, an Apple Pie from the Amish booth at the LS Farmers Market, and pasta salad. Some may say it's a coincidence, but I don't think so. He knows what we need and He knows the stresses in our lifes.

Headaches...

The intensity of the headaches increased dramatically on Tuesday which caused major intestinal problems as we couldn't get out in front of the pain.. and Lindsey couldn't keep the pain meds down. Wednesday morning was another bout of serious pain again... same routine with the challenge of keeping the meds down.

After consulting with the Doc, we switched from IB Profen back to the Hydrocodone on Tuesday, and then double the dose on Wednesday - 1000mg every 4 hours. Steroids and anti-nausea were added on Thursday and by Friday afternoon it appears that Lindsey has adjusted to the meds and the headaches and nausea are under control. Steroids were added to reduce the swelling which should help relieve some of the headache pain. While she slept most of this week, Friday evening she felt like getting out and asked to spend the evening/night at my sister's house.

In Lindsey's words.... "this is bad... it's growing... and dang-it."

Weekend Update from Mom

In the car last night on the way home from T.J. Max, Lindsey said to me "I'm losing my voice." Well, her voice is fine so I replied "Your voice sounds great." She corrected herself and said "No words" She is losing her words.....

And that is correct. Her vocabulary is declining. She sits more quietly. We have noticed this more since Thurday, when the headaches started getting worse. We switched from the hydrocodone to higher doses of IB Profen so at least she is not sleeping all the time. Saturday and Sunday Lindsey was up most of the day with only a short nap on Saturday. Sunday after church a few friends took her to lunch, which she really enjoyed.

Lindsey was looking forward to going to church camp, at Camp Wilderness, on the 19th for a couple of days. She shared with a friend at church that it will depend on what's going on with her headaches. I also wonder if shes unsure about going since can not communicate as clearly.

So... just for a minute. Close your eyes and imagine trying to communicate and you can't. Close your eyes and imagine knowing that what is going on inside of you will most likely take you sooner than you had planned. Your dream bubble has a large leak in it. While I've been trying to stay positive and focus on the good, today has been hard. I miss my Lindsey conversations and I absolutely hate seeing what the tumor is slowly doing to her.

This journey no parent should have to walk.... I'm thankful that it's a journey I'm not walking alone.

Head for the Cure 5K - Aug. 29, 2010

We're forming a team for the "Head for the Cure" 5k Walk & Run on August 29, 2010 which will take place in Corporate Woods. Help us fight the war against Brain Cancer and join our team or make a donation.

Our team name is ---- "Lace-up for Lindsey".---- to register or to make a donation, go to the following link:

http://www.headforthecure.org/headforcure.aspx?pgID=883

Click on "register on line today", create an account, select donate or continue to event registration, complete registration, you will be asked if you want to join a team (which you do..Lace-up for Lindsey ) and then select your event which is "team 5k".

While "Head for the Cure" will give you a t-shirt for registering, we are also in the process of having t-shirts made. I'm hoping to get some donations for the t-shirts so we can keep the cost down. The picture is a sample drawing that Hannah did in church last Sunday... Greg's best man does this type of stuff for a living and he's in the process of creating the graphic (THANK YOU Chris MeaD!)

As we get closer to the event, we'll organize a meeting place so we can all "lace-up" together and cheer each other on as we help to fight this terrible illness. I'll also distribute information about ordering the "Lace-up for Lindz" t-shirts if you're interested in getting one.

Regarding the "head". Lindsey started having headaches yesterday and has spent most of the last two days in bed resting. She joined us for dinner tonight (Friday, June 11th), showered, and put herself back to bed for the evening. Bob is back to his routine of sitting with Lindsey until she dozes off to sleep.... it's not unusual for me to find him fast asleep beside her.

Times are interesting and making the best of the interesting times is our focus. We go about our daily routine, we laugh, we cry, we get angry occasionally with each other. Most importantly though we try to be more sensitive to what each person is going through. We listen, we talk, and we forgive.... and move on. We're experiencing something new as a family and stumbling a little (and some days a lot) as we go.

TVAX Study Discovery

We have opted to not participate in the study. Would Lindsey of qualified? Very possibly. Would the study prolonged life or resulted in killing the cancer cells? That is unknown and not the primary purpose of the study. Here's what we learned:

* The primary focus of the trial is to determine safety of experimental vacine, primarily to determine side affects.
* The study has made no claim that the participate will benefit from the treatment and suggests there will be considerable risks.
* The risk/benefit equation is certainly weighted heavily on the risk side.
* Would patients in the future benefit from this study? Very possibly. The real winner at this time would be TVAX Biomedical.
* The procedures are intense, starting first with crainiotomy to collect cells, vacinations in mutible areas on both sides of chests and thighs, numerous needle sticks for blood; MRI's; 5 hour procedure to collect white blood cells; IU infusions; Injections under the skin every 2-3 days for 7 days; and a whole array of side effects.
* in addition to just the pure stress on the body, 46 hours of hospital time over the course of 24 weeks plus travel time.

While there is a desire to help advance the science of cancer treatment, Lindsey (and we support her decision) is not willing to pay a price in time and quality of life to enter the study. A study that could make her worse due to the risks involved.