Nicole went through most of January with few complaints of headaches, although several times. We caught her holding her head, and acting much quieter than usual for her. She denied having any headaches, but during the same period she expressed fear of going back for surgery.
January 26th. The intermittent headaches increased, Day and Night, without relief, On Wednesday January 30th Nicole had her shunt revised. This was the 5th revision in @5 Months.
The Doctors are working on a solution to the problem.
We hope they find one soon. Because she is still having the headaches.
February 16th found Nicole back in the hospital. This time we will try giving her Toradol to try to extend the time before our next shunt revision.
The Toradol did not appear to do anything, and Nicole has anywhere between 2 - 5 headaches a day. So far they are controlled by the Tylenol.
It is hard to get up with her in the middle of the night one or two times to give her Tylenol. and it takes her an hour to get back to sleep.
We have another MRI (Routine every three months) Thursday March 14th. We pray for good news. So far the tumors are remaining stable. (No growth)
May 29th Things have been hectic, We haven't had time to work on the site.
The MRI on 3/14 showed no tumor growth (Thank God).
Nicole's headaches continue, and she has been in and out of the hospital several times.
The pain management team tried Nerve Blocks, and we are currently trying another pain medication "Ultram".
Nicole will be trying summer camp this year. One Step at a time camp C.O.S.I.{Childrens Oncology Services of Illinois} Located on Lake Geneva in Wisconsin.
It will be the first time we have been apart, so this will be interesting.
We feel secure, in that the camp is a medically supervised camp with kids "just like" Nicole, and some of Nicole's favorite nurses will be there.
So we are sure she will do fine.
There have been several community benefit events for Nicole, this has taken a lot of stress off of us.
I thank God that we live in a community where the people are there for their neighbors.
Nicole's next MRI is scheduled for June 24th, and we wait.
June 24th MRI showed no growth of the tumors on the spine, but did show 2mm of growth on one of the spots we are watching.
The neurosurgeon wants to monitor the situation, a little longer before taking any action.
June 28th Nicole's headaches progressed to a point where the pain relievers were not working long. We took her into the hospital where the neurosurgeon revised her shunt.
This time they used a different catheter, lets hope it doesn't clog as easily.
Nicole is really excited about going to camp next week.
July 5th Great News! So far, Nicole is not having any headaches. She Smiles and says "My shunt doesn't hurt anymore", "I have no more owie", and "I feel good".
We are so glad to hear this.
Well Nicole's summer camp starts tomorrow. She is very excited.
July 10th We took Nicole to camp on 7/6, and she loves it.
Well, Nicole really enjoyed summer camp, although she caught a nasty Gastro Intestinal bug while she was there, it went through all the kids in her cabin. Thankfully it only lasted about 24 hours.
Nicole spent 1 out of the 2 weeks at camp, which was good considering that this was the first time she has been away from us.
The relief from the headaches was short lived. They started back 7/6. Now we are back in the morning headaches cycle.
September 9th We had Nicole's 3 month MRI. Due to Nicole's weight, It is becoming more and more difficult to sedate her for the scan. While Nicole was being sedated she began gasping for air. This was scary. I can't wait till she can do it without sedation.
The good news is there was no tumor growth, But Hydrocephalus was noted. Her Right Ventricle had collapsed, and the Left and Third Ventricle were enlarged.
September 11th Dr Tomita installed a second shunt, and revised the first one.
Dr Almond removed Nicole's Vena Port, which was becoming more trouble than it was worth. We had it for 4 years, so it gave us good service.
We hope that this will solve the headaches, and allow Nicole to live headache free. Time will tell.
November 6th we took Nicole to Children's Memorial in Chicago. She was complaining that it was harder to see things than usual.
November 11th we took Nicole to Northwestern University Medical Center in Chicago, where they took pictures of the Optic Nerve disk at the back of her eyes. This will give us the best view of the extent of her nerve damage, and can be compared more accurately to future pictures.
November 14th Update. It has been Two months since the second shunt was installed. Nicole is doing much better, no headaches during the day or evening. Nicole still has her morning headaches. The only time she doesn't have them, is when we get her up early, around 4:30 AM. We think the shunts are positional, and too many hours of laying down causes pressure to build up. We can live with one headache a day; so far Tylenol controls it.