Friday, April 29, 2011

Tori Update

I have delayed doing this update for several reasons. My heart is breaking right now and I am so full of anger I am having a problem keeping myself pulled together and Sunday is Tori's 15th birthday and we want it to be a good one so we are trying to keep some secrets til next week.
This week we got results from blood tests and the scan's Tori had on her throat. I'm sorry, I do not have the correct medical terms to put here right now, Heather hasn't given me the paper reports yet but Tori has a certain type of thyroid cancer. Before I give you details let me say that her M.D. tells us that this is a very treatable form with a high success rate. That's the good news. Now it goes down hill, and I can't tell you what will happen when or how all the Dr.s are going to co-ordinate what is the priority here . She will be seeing an Oncologist this coming week. Her M.D. says probably she will have the thyroid and Lymph nodes removed. After 5 or 6 weeks recovery time from the surgery she will have injections (I am sorry I can't remember what the name of this injection is) but supposedly it should kill any cancer or precancer cells that remain after the removal of the thyroid and lymph nodes. This avoids the need for any type of Chemo or Radiation therapy.
I worry how all this will be co-ordinated with the Neurological surgeries. We will have to try to be a bit patient a bit longer while this is all tackled by the involved Dr.s.

This is so very unfair , my anger is so over the edge. I cannot tell you how many times in the er this past winter Tori tried to tell these Dr.s what she felt in her throat. Even her own M.D. as much as we like him, when I took her for a visit with him in January we both tried to explain the pain in her throat and collarbone, I pointed out the fact that she was living on liquids because aside from the fact that she had no appetite she could not swallow. Every last one of them cut her off and would not listen. Her MD gave her Zoloft that day. My insides are shaking right now and my mind won't stop between figuring out to keep her happy and comfortable, wondering how we tell her this, as it is she is scared to death over the surgery on her back and head. She is going to need alot of care for a while and yes I am rambling so I will stop and I will update this post when I have the terminology to share with you and some kind of plan has been started.

Friday, April 22, 2011

Tori Update

Tori met with a neurosurgeon at Albany Medical Center today. First let me say, Heather and Tori both liked him very , very much. It was a very long visit. First he sat and listened to Tori tell him in her own words everything that has gone on for the last 7 months. He listened carefully, listened to the smallest detail. He had looked at all the films and reports before seeing her and was very unhappy with them. Tori's body spasm's involuntarily and did so often during all the CT's, MRI's and ultrasounds. But he was able to see them well enough to glean some basic information and after seeing Tori , took Heather into look at the films with him. Starting at the top, there is minimul extension of the cerebellar tonsils (her brain) but enough of an indication for him to believe if the spinal problems are not addressed properly now, she will be going through brain surgery for Chiari Malformation in 10 years.
She has a leak. The pressure from the bulging disk and syrinx in her back has caused so much pressure the in her neck area she is leaking cerespinal fluid. This fluid is accumulating in her skull and putting alot of pressure on her brain. The space below the bulging disk, is also causing an accumulation of fluid in that area. The "cyst" in her throat is actually a small tumor possibly "residual thyroid" tissue.
He will be operating on her back, doing what ever they do to relieve the bulging disc, draining the syrinx and putting a shunt in her head to drain the fluid accumulation on her brain. BUT,
before they make a positive game plan he wants proper pictures with dye. Not a full body MRI.
He wants one just of her brain. Then he wants one just of her Throat, He wants on just of the TSpine and last he wants one Just of the LSpine.
Heather also has to go get a referral from Tori's MD for a Thyroid Specialist because of course this is not the Neurosurgeons area.
Any way that is what we know today and after all these new tests are done Tori will see him again and and they will create an absolute game plan. In the mean time she has new prescriptions, pain meds, sleep meds, and I will update when we know more. Thanks guy's
If any one has any ideas how to keep a bedridden 14 year old entertained let me know.

Saturday, April 16, 2011

Tori's Story

It is time to settle down and start our post's on my grand daughter. I have to start from the beginning for family that has been out of the loop. My Grand daughter Victoria is 14. Last September she was ill, it was bronchitis. For two weeks she got sicker and sicker and we ended up taking her to the Hospital Emergency room to find out she also had mononucleosis. That wasn't enough she was also having a CMV attack. CMV stands for Cytomegalovirus. The symptoms are severe , my daughter spent a month in the hospital with it while she was pregnant for Tori and obviously passed it on during birth. The funny thing is, someone can carry this illness their whole life and you only have one flare up where it makes you deathly ill. After this flare up, it never happens again. Go figure, Tori had her flare up in the middle of mono and bronchitis. During the winter months she was so very severely sick that it was frightening and required a number of trips to the emergency room. During one of these trips it was also discovered she had a large ovarian cyst on her right ovary. Under normal circumstances it was bad enough for surgery but with everything else going on in her body it was not possible so she just lived in constant illness and pain and then lost her insurance. My daughter fought to get it back to no avail and over the next few months we had more trips to the er. At this point she is a uninsured teenager and we got blown off 4 times. They gave me a diagnosis each time of "Generalized anxiety disorder" she got told she was having panic attacks, she was called a hypochondria, she was teased and put on Zoloft , an anti depressant. Zoom forward a few months, Tori is still very sick, she finally got over the bronchitis, and CMV attack, the mono subdued after 5 horrible months and then she got her insurance back. Now having insurance we get on the phone to all her Drs. this leads to visit's. Her gynecologist orders a new ultrasound. We have the results. During the time she was being called a hypochondriac, the large cyst on the right blew up on it's own leaving a mess of scar tissue and there is nothing to be done but guess what? She has a new cyst on the left ovary now. But it is very small so they are going to leave it alone and just watch it. Her MD decided that due to the fact that she had so much pain in so many places that she should have first of all some blood work. There was some suspicion of liver damage from the mono and some tests for thryoid because she has alot of trouble with swelling in her neck and pain in her collarbone area and trouble swallowing. We are still waiting for results of the blood testing. He also decided even though she has had an awful lot of testing she needed a full body MRI. We have the results from that. First, they found a large cyst at the base of her tongue kind of going down her throat, so the Dr. sent her for a CatScan on her throat and thyroid. We are waiting for those results, should have them on Monday. The next thing they found in the MRI is actually 2 problems. First she has a bulging disc and a large gap below the 2nd vertebrae between her shoulder blades. and she also has Syringomyelia. Syringomyelia is a condition of fluid filled tumors in the middle of the spinal cord. The symptoms are severe and disabling. There are several causes for it but the top one is Chiari Malformation. Those of you who know me or have followed my blog from the start know that I am disabled to the diseases of Chiari Malformation and Syringomyelia. There is no cure. Surgery on the Chiari stops the disease from killing us by squeezing our brain but the symptoms are life long and very much like those suffering from M.S. Any way, Tori has an appointment on April 22 with a neurosurgeon at Albany Medical Center. They will look at this MRI and do one on her brain. Mean while we wait. We know surgeries are coming but nothing changes the fact that my grand daughter at 14 may spend the rest of her life disabled by diseases that may have been caught much earlier if she wasn't being blown off as having Anxiety Disorder or being a hypochondriac. Not that it is any one's fault that she has these illnesses (except maybe me since I started this one) but maybe if caught a bit earlier it would have been good since it is known that the earlier in childhood the diagnosis, the better the prognosis. So as I said , we wait till the next test results and Dr. visits before we know more. I will update each time we get new info. In the meantime, I know I don't explain things really well so if you would like to get better info on Chiari Malformation and Syringomyelia please check this website:

Just one more I promise

This foolish cat was so intrigued playing with the bubbles in the bath he ended up falling in so he got a bath along with the grandson. Dunkie is no kitten but he has been full of mischief all week long.

Friday, April 15, 2011

Spring Fever?

Couldn't help myself, this cat is full of it this week!


My newest beaded painting was not done for sale. My son has alway's loved dragons. He is 27 now and still collecting all things dragon so I had to make him a beaded painting. I have to tell you this was my most difficult peice yet and I am not completely happy with it. It was hard with all the little twists and turns in each color. I had to follow through each shape in it's color and try to make the lines "flow". I have decided I do not like using dark background paint, even though I love the color it does not let the beadwork itself pop the way it should. The background should be just that, a background, and the beading is to be the star of the show. So I can say I truly am happy I attempted this because I learned just a few more lesson's to put on my "don't" list.

Thursday, April 14, 2011

I can't catch up

Sorry, my picture came out to small. A great deal of stuff going on right now and the cat is in rare form. He has decided he wants bird for lunch. This past week has been so hectic and heartbreaking. My father in law passed away last week and was buried with full military honor's on Monday. If you have never attended a Military funeral I have to tell you, if you arent' sobbing hard enough over the loss of a loved one, the soldiers at attention and the playing of taps topped off with folding the flag and passing it to a family member will turn you into a large puddle of tears. About the same time as all this was going on my sister in law got sick at work. Had to be driven home, my brother called her Dr. who sent her for a catscan and then she was taken by ambulance from the medical center to our biggest hospital. She has bleeding in her brain, the neurosurgeons are having a hard time finding out why and she has been laying in the hospital horribly sick for 8 day's now. And now, the reason for tonights post. My granddaughter has been ill since last September. We have gone round and round with tests, er visits, Dr's and we are doing it all again. So, trying to keep everyone who needs to know up to date on each new test and result we are going to "borrow my blog" for a bit and send everyone here for updates. So please bear with me if you see a number of posts talking about my grand daughter, it is for the benefit of family and friends who need to know what's going on. Every once in a while I will try to post something normal so you don't get tired of lousy news. ;o)