Out of Fear

It sometimes truly amazes me that even the worst things in life bring us something good. Obviously with everything going on in my life my beadwork has once again suffered. I was sitting in my studio the other night thinking about my Tori and was looking for a way to bring something good forward. I took a little square of paper and wrote down a little prayer and rolled the paper up in a tiny scroll. We are alway's told to write down our dreams , our wishes, our affirmations and keep them close by. Then I got to thinking, when I am making my amulet bags, I alway's determine the size by asking myself, What could I keep in this bag and it hit me. I should make myself a mini amulet bag just big enough to put my little scroll of paper in. And that's just what I did, I made a bag just about 1" by 1" and put my prayer in it and a new idea was born. I am going to make a bunch of these. I am naming them, " My wish bag for the love of Tori" I can do two or three a week and put them up in my shops, maybe get some new sales flowing. I recently got a large lot of seedbeads from someone I buy from on Ebay, every once in a while he does a close out on colors that are not so popular at the moment, so I have alot of beads to use at the moment.

Just thought it would be good to show a bit of the normal Debsparkles tonight.

Before I close this post though I wanted to say, a number of people have contacted me through here and twitter and my Etsy team who have some experiance with what Tori is going through and have given me some very positive feedback , you know who you are and I thank you so very much. The positive info makes things a bit easier for us right now and it is truly the stuff Tori needs to hear.

Tori Update

I am not sure if this is so much as an update as a chance to define the information I have already given you. After a visit with Dr. Elizabeth Valentine , Dr. of Internal Medicine and Oncology, we have the following definates.
Tori has Papillary Thyroid Carcinoma. This is the most common form of thyroid cancer, tends to hit woman more than men with no real reason or cause known. It is a slow growing cancer, and the most treatable. Next week Heather and Tori are taking a trip to Boston, Mass to the Shriners Hospital. At this time they will meet with case workers, the physician team that will be working on her and just get shown around the hospital in general. They will come home from this visit with a surgery date. She will have the thryoid removed and to be honest they can not tell until they are doing the surgery whether they must remove the entire thyroid or can just take the side infected by the cancer. Most surgeries end up with the entire thyroid being taken. After this surgery she should be home quickly, within a day or 2. Then for at least a week my house will basically be under quarentine. No friends, no people in and out, her mom and brother can not be here, this is due to risk of germs, as she will have a very, very , low immunity to the everyday germs we carry. I will be the only one she is exposed to at that time, better get my clorox bottles stocked up!
After a approx. 5 to 6 weeks healing time she will go back to the hospital. She will be administered radioactive iodine. Just a very small dose at first then a scan is done that will show any thryoid residue, active cancer cell, anything missed in the surgery. Then she gets the full dose and comes home again. This time my house will be under quarentine again even more so. Not because of germs, but because she herself will be radioactive and can share that with others. I cannot get any closer than 6 feet from her. She has to be in her room alone, the front bathroom must be for her use only. I will be stocking up on paper plates, cups and plastic forks , etc. I must wash her laundry seperate from anything else in the house. This should really get interesting. But the good news is doing it this way, she avoids things like coming home vomiting, or losing her hair and all that stuff we associate with chemo and radiation. She should heal pretty quickly, the real downfall is she will spend the rest of her life taking medicine to replace the hormones her thyroid provides naturally.
One week from Saturday she has an appointment with her neurosurgeon, this will be on hold until the thryoid cancer is taken care of but they will formulate the plan for the neurosurgery.
This is going to be a crazy time for all of us, Joshua will be with me while Heather is with Tori, when she is home I will have to take time off work here and there but we can only get through this one step at a time.

We did finally sit down this morning and tell Tori everything. She had a great birthday and to tell you the truth she took the news better than myself, Heather and TJ did. I guess because she in her own way knew. She has told more than one Dr., nurse, family member that she knew that something was really wrong with her. People need to learn to listen when a smart , self sufficient, tough kid cries for help.

I probably won't need to update again until next week at which time I should have surgery dates and more info from the Neurosurgeon. Until then I had better get busy beading like crazy and finding more way's to sell my jewelry because no matter how much help we get , this is going to be costly in many other way's So just keep those prayers coming. Love you all very much and we so appreciate all the support we have been getting from you right now.

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.

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.

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: http://www.asap.org

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.

Spring Fever?

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