August 19

Hello All,

The list of those requesting to be added to our updates is growing and I'm grateful. It means more prayers are being offered for Lindsey and also Joshua. We can use all the prayers we can get. Many have also added their names to Temple prayer rolls from Hawaii to the mid US. So many prayers are being offered that we can't help but feel that great things are able to happen and miracles occurr.

It feels like forever since I sat down to type an update but it's only been since Sunday.....I think. Sunday was a very scary day for us all with the seizures but we survived and then came Monday.

Monday and Tuesday

Since Lindsey was in Neuro ICU it was requested that no one stay overnight. They have 1 very qualified nurse that has only 2 patients to attend to so we decided to all get some rest and go home. they assured us everything would be alright. When Josh and Pam (Lindseys mom) arrived Monday morning Lindsey was in seizure. It wasn't showing up any of the monitors. Thankfully, the neurosurgeon was on floor and witnessed what was happening. They made the decision to do a drain, which essentially is they drill a hole in her skull to relieve the pressure with a tube that allows the fluid to flow into a receptacle so they can measure how much fluid during a specific time period is draining. ***This part is a bit graphic*** The procedure was done right there in her ICU room as there was no time to move her. It was that critical. Once the hole is drilled the normal occurrence is to have the physician withdraw the fluid, however, there was so much pressure that once they were thru the bone the fluid spurted out. Alot. They did not try to measure the amount as they knew they needed to let it relieve the pressure. Once it ebbed they were able to attach the tube to begin measuring. The concern now was with the amount of pressure which had built up there was a possibility of permanent brain damage. A person under normal circumstances produces cerebral fluid at the rate of approx 20cc an hr. Lindsey has been draining 40 cc an hour. Monday, we honestly thought we were going to lose her. After the release of pressure she should have come back around, been alert and able to speak. She could do none of these things. She would try to speak but could not be understood (imagine your mouth full of cotton and then trying to get your words understood) She could not swallow, she could not move most of her right side. But this girl is incredible. The nurses came into to trade out the IV for PIC line which alleviates the toxic drugs from damaging the veins and its' sutured in the bicep area. Lindsey wanted to know her blood type and we were trying to explain that they were only putting in a pic line and she got angry and forced her words out. JOSH! I WANT TO KNOW. She never gives up or complains, but she is fiesty! The Dr.s said her state on Monday caused them great concern but wouldn't you know that on Tuesday, she was speaking clearly, woke up hungry and was able to feed herself and even got up to walk in the afternoon. No one could believe it. YOUR PRAYERS ARE BEING HEARD!! The occupational therapist said she only sees a very small percentage of people go from where Lindsey was on Monday to where she was on Tuesday. It rarely happens. She even ate nearly 1/2 a package of oreos and milk!

Wednesday and Thursday

Wednesday Lindsey was doing even better. Jessica and Brian drove down on a moments notice from Calgary to be with family. Jessica spent all of Wednesday with Lindsey as Josh was going to try to go to work but he can't force himself to leave her side. He is now spending the night and hates to even walk down to the cafeteria. It was good for him to have his sister by his side. Lindsey received some sad news however, she will not be able to have her eggs harvested so there will be no children. I know it seems like a silly thing in the wake of trying to save her life but to Lindsey it was devastating. Her neurologist/oncologist, Dr. Chachair, loves Lindsey very much. He has been with her all thru the years of trial. He grabbed her chin and looked in her eyes and said "We will try to do what we can but we have to save you". She understood Had her moment and then let it go, knowing it serves no purpose to hold onto what will never be.
The neurosureon, Dr. Maughn, came in last night and let us know they are doing the surgery to replace the drain and put in the shunt, which is permanent, today at approx 3p. This is brain surgery. They have to remove a portion of the skull, implant the shunt which then has tubing that runs from the shunt, thru the arteries, around behind her ear, down her neck and eventually allowing the cerebral fluid to drain into the empty cavity surrounding her stomach. This has to be done as the risk of infection with the drain is too great. It will be placed where the drain is currently. The body should be able to absorb the fluid and her body eliminate it naturally.
The concern:
Because Lindsey has cancer, there is a great possibility that the fluid which will drain down into her body will spread the cancer into her other organs. It is a very real risk but she can't survive without the shunt so it has to be done. Dr. Chachair, Dr. Maughn, and Dr. Thompson (the radiologist) are all meeting today to determine the best course of action. We know that treatment needs to begin immediately.

I've left alot of detail out, I don't think we need to go into it but if anyone wants details of how spinal fluid circulates or what is causing the pressure or what type of shunt they are going to use, feel free to email me and I will do my best to answer those questions. We've also received requests for visitors, however, even though she is doing markedly better, we need to remember she is still in critical condition. At the ICU only immediate family are allowed to visit and even then only 3 at a time and no children under 14. She's still tired and we have big families. I know it's frustrating. I know it's a show of love and concern to visit but believe me, the best thing we can all still be doing is praying. Email me notes (karrlot@gmail.com) as I make sure those are passed along. Don't give up and let up. As I said, we never know what miracles are waiting for us.

With all our love,
Julie

Here are a few pictures from her time in the Neuro ICU.

A break from the patch.

Lindsey with her Mom and Dad, Todd and Pam Robinson.

Still Smiling!