Next steps...

First of all, there has been a slight change in plans for tomorrow. The luncheon following the funeral will no longer be at Vittorio's. It will now be held at the Millrose Inn - 45 Barrington Rd, South Barrington.

During the past few days, I have been busy sorting through photos, making arrangements, ordering flowers, writing a eulogy, etc... Once the funeral is behind me, I need to start making plans for my trip to MD Anderson in Houston. I will go down there on November 8th and my surgery will be on the 11th. I strongly weighed the decision of which doctor I was most confident having perform my surgery. I decided that if both of them were in the chicago area, I would choose Dr. McCutcheon hands down. While I wish I could be done locally, I feel that the most positive outcome far outweighs the inconvenience of geography. After speaking with both surgeons for about another hour each, I feel confident in my choice to pursue MD Anderson. Dr. McCutcheon makes the surgery sound so simple, like I am having my appendix removed.

Regarding the urgency of the surgery, he told me I could wait another month. However, now that my brother has passed on, I feel it best just to get this over with, so hopefully, I can enjoy my holidays. He told me to expect to stay two weeks in the hospital and that I should be able to fly home the day before Thanksgiving. He said they would start rehab & physical therapy there. He'll also take out the staples and do an additional scan, to make sure I am safe to fly home. He feels I can then follow up with my surgeon here at home. I will then go back to see him about six weeks post-op, before starting the chemo. I'll get all my baseline scans done while I am there (sometime in January).

It may be hard for you to believe, as so many horrible things have happened in this past month (on top of my brother, both of my children have been really sick), but we received more bad news on Thursday. We called Steve's parents with news regarding my brother & found out that his father had a mild heart attack on Tuesday and was in the hospital. They hadn't wanted to bother us with the news. He remains in the hospital with plans for angioplasty on Tuesday, October 27th. We spoke with him this morning. He no longer has chest pain and feels that he could have gone home these few days before his procedure. Add him to the prayer list.

Once again, another thank you to everyone for the outpouring of support...

Steve's Funeral Arrangements

Funeral arrangements for Steve Kolinski...

Wake
Ahlgrim Funeral Home
201 N. Northwest Highway in Palatine
Monday, October 26th, 3:00 - 9:00 p.m.

Funeral
A short service will precede the funeral at the Ahlgrim Funeral Home on Tuesday at 11:00 a.m., followed by burial at St. Michael's Cemetary at approximately 12 noon. There will be a short graveside service.

Following the funeral, there will be a luncheon at Vittorio's Restaurant in Palatine.

In lieu of flowers, the family is requesting donations be made to the VHL Family Alliance.

(Arrangements will be listed in the Herald and the Chicago Tribune on Sunday.)

Kim will post more tomorrow when she is able. In the meantime, she wants to thank everyone for their kind thoughts and gestures...

Sad news today...

Kim's brother, Steve Kolinski, passed away today, peacefully, at 2:35pm. Kim was at his side.
When there is more info available, it will be posted here...

So many questions, so little time...

Starting out with my brother Steve's condition... He continues to deteriorate. The only command he can follow is an occasional movement of his left arm and opening his eyes to his name. He follows you around the room with his eyes and appears to understand what is going on. His EEG is normal and shows no brain damage or seizure activity. They feel he is a mind trapped in a body unable to communicate. Regarding rehab, he is no longer a candidate as he cannot follow a command - meaning he can not rehabilitate. They told us that even if he went to a rehab, it would take a miracle for him to even say his name or willfully move his body again. He has a feeding tube in for nutrition, as well as IV's to manage his cardiac issues. He also has two blood clots, which they are unable to treat as it could cause a bleed to the brain. They did take him to surgery on Monday morning to put in a larger shunt to drain the fluid from his brain. They successfully completed that. Last night he went into respiratory distress and is now on oxygen. He is also being treated for pneumonia. We met with many physicians regarding his living will and his wishes. It has been decided that if he does not become more alert or improve in the next week, we will need to follow his wishes and turn off his feedings. Unfortunately, none of his family members are happy with this option. We feel it's in God's hands and hope that it doesn't come to that. We are planning to transfer him to hospice next week if need be.

Unfortunately after what has transpired in the past two weeks, I am questioning the urgency of my brainstem surgery. As confident as I was, I have seen just how dangerous this area (the brainstem) is. I wouldn't wish this upon anyone, let alone myself. My internist feels the neurosurgeon at Northwestern is highly respected in the field and MD Anderson may be no better - that the risk is so high of having even temporary damage. My internist and neurosurgeon here feel that I should opt to drain the cyst, rather than remove that and the tumors. This could buy me some time, but it's likely the cyst will refill & they cannot predict how long that will take. It's really not treating the problem. I thought I was 100% confident in MD Anderson's plan, yet the more I read and the more doctors I talk to, the more questions I have. I need to be sure I'm making the right decision. I also know that I don't have a lot of time & risk complications the longer I delay treatment...

I know many of you are thinking of me and have been calling. I want you to know how much I appreciate your concern. I'm just so overwhelmed right now that I'm not able to speak to everyone personally. I need to use this blog as my primary means of communication right now. I hope you understand. Please keep your thoughts and prayers coming & I will continue to update this blog as things change. Love, Kim

It's been a sad day....

I saw my local kidney surgeon this morning. He agrees with the recommendation of Dr. Jonasch at MD Anderson - that it is best to proceed with the brainstem surgery first, wait 3 months and then go on Sutent (the chemo drug) until I find a kidney transplant donor. After looking at my labwork, renal scan and function of my kidneys, there is no way to remove my left kidney & allow my right kidney to function alone. My right kidney is not functioning well enough to handle the job on its own. Therefore, a transplant or dialysis are the only options. We looked long and hard at the scans trying to find tissue he could save on the left kidney but we couldn't. The whole thing is covered with solid cystic lesions. The danger of not removing the left kidney soon is the possibility of metastasis (because these tumors are malignant). If the chemo does not work right away to shrink the tumors and cysts of the left kidney, then I would need to do dialysis until a kidney is available.

Regarding my brainstem surgery, I am trying to get the date moved up so that I will be home before Thanksgiving break. Also, it would allow me to address my kidney issue sooner. I'm starting to feel nervous about waiting too long.

I finally found out why my brother has not been improving this past week in ICU... He was found to have swelling of the brain and hydrocephalus Saturday afternoon so severe that it caused a stroke to the brainstem. They found this out accidentally while doing a pre-op MRI scan this morning in preparation for another shunt surgery. Basically, your brainstem controls your swallowing, movement & some of your speech - these are the areas that have been affected with him. He can't move his right side & his speech is soft and garbled. The doctor was very sorry to say that his condition may never improve and he will require lifetime rehabilitation.

Keep the prayers coming....
Kim

Scheduled for surgery...

Once again, so sorry for the late entry. Life has been somewhat of a roller coaster ride lately and I want off!

My most recent doctor appointments have shown many serious increases in tumor & cyst size. Once again I find myself requiring immediate action. I have been working on developing a plan to follow through with the surgeries in order of priority. My optic nerve tumor continues to grow and is causing further decrease in my vision. I can no longer see the large "E" on the eye chart. Even with corrective glasses, I am considered legally blind. There are still no treatments or chemo therapies avalable at this time to help shrink or stop my tumor from growing. They feel a new drug won't be available for at least 9-12 months. Please pray for something sooner!

As for my abdominal scan, my pancreas has been totally replaced by cysts and continues to cause digestive problems, e.g. nausea and malabsorption of nutrients. Therefore, I have a decrease in my energy level and have lost weight. Last week I started on pancreatic enzymes to help with my digestion and absorption. My kidneys are also a mess. I have a total of one kidney remaining - 2/3 on the left and 1/3 on the right. My right kidney is only functioning at 15% of the total and my left picks up the other 85%. Unfortunately, it is the left kidney they want to remove due to large cystic masses and renal cell in that area. I am hoping there is some possible way they can save a portion of that kidney so I can avoid dialysis or a transplant. I see my local kidney surgeon tomorrow and am awaiting opinions from both NIH and MD Anderson.

My biggest and most critical dilemma lies in my brain stem and upper cervical spine. There now are two small tumors located at the base of my brainstem (the medulla - the worst spot for it to be). Attached to one of the tumors is a large cyst, about 20 times the size of the tumor, which is causing me many problems. About six weeks ago, I started experiencing numbness down my whole leftside, from my shoulder to my foot, as well as numbness and tingling in both hands. I've also noticed an increase in headaches, nausea and loss of balance. I've completed three neurosurgical opinions and have chosen to have surgery at MD Anderson in Houston. It is scheduled for November 11th, although I'll need to go earlier for testing. The surgery should last a minimum of eight hours and will require a two week hospital stay. One reason I chose this hospital is that I have family in the area, who can stay with me once Steve needs to return home to the kids. The main reason I chose them is that I was extrememly impressed by the doctor, not only his expertise, but also his wonderful bedside manner. There is a 5-8% risk of permanent neurologic damage with this procedure. However, if I do nothing, there is a 100% chance of neurologic damage/paralysis.

Start praying now & I'll continue to update you as things change. Lately, that has been daily! Also, please add my brother, Steve, to your prayer list. He had brain surgery last Wednesday and remains in neuro-intensive care with multiple complications and is still semi-comatose.

Thank you again to Nancy for being my travel buddy (and candlelight dinner buddy)! I couldn't have found my way without you...

Kim