Our son's SCT and how to help him?

[mary]

Our 22 year old son was diagnosed with a SCT on Jan 17th when he went to the ER with a headache. They did a CAT scan and discovered something and ordered a MRI to be done immediately. We met with the neurosurgeon on Sunday morning and he told us that our son needed surgery for this tumor that was located in the C1-C2 range. Needless to say we were shocked as other then this headache, which the doctor says may very well not have been from the tumor, our son had no other symptons. He had surgery on the 22nd to remove the tumor. The doctor was not able to get the whole tumor but did feel he was able to resect between 50-80%. Our son was only in intensive care for a day and came home after 5 days. He is able to move his arms and legs and walk, but his right arm and hand are still weak. He is in rehab 3 times a week and I do think he is seeing some progress. Today we met with the surgeon and he told us that the initial pathology has come back as a astrocytoma with low grade cancer. He has sent more off to the Mayo clinic for testing also.
I have to say that my head is still reeling from all that has happened. Our son seems to have good and bad moments emotionally. He did tell me in the hospital one night when it was just the two of us that his life was over. I stood strong while I was there but fell apart when I got home. I am not sure any of us totally have been able to comprehend what this means for our son's future. I also wonder if those of you who have gone through this can give some advice to me about how to help my son the most. What did people do or say to you that was helpful and what did you find that some did that irritated you?
I was glad to find this site and hope that I will be able to understand more about SCTs and how to help our son. Any sharing would be very much appreciated.

[linda]

Hi Mary,

It must be tough to experience this as a parent AND caregiver. I'm one who experienced the SCT and my husband was the caregiver. Once my surgery was over and I was at home, we both cried. (He NEVER cries!) It was like the relief valve went off for both of us.

I really don't know how to answer your questions and the most I guess I can offer is for me, just knowing my husband was there and willing to help me was the support I needed from him. He even used to dry my feet for me after I bathed and we weren't newly weds either! I consider myself pretty independent, so I did find that a little "space" was helpful for me. Not everyone is the same so I suppose if you continue to read all of the information within this site, you might come up with your own "guide".

I don't know if it's good or bad that we don't know what the future holds. My prayers are with you and your family.

Linda C.

[cindylee]

Mary, the hardest thing is to be a caregiver. The best thing to do for your son is to just be there for him. Sometimes you don't even have to say a word. Just be there. This site is loaded with information. And also, since it is a form of cancer, there is a wonderful support board for different types of cancer and for caregivers and for emotional support called cancer survivors network...www.cancersurvivorsnetwork.com. If has helped me tremendously both as a patient and a caregiver. The best advice and support you will receive will be from other folks who have been in the same or similar situation. I found it hard to take advice, no matter how well meaning, from people who had not experienced the struggle of my situation. They may have been sincere, but they were just words to me. Talk with other people who have gone through this. The social worker at the hospital or rehab center should be able to steer you somewhere. Your local cancer society can also help. Support groups are a good thing as you meet with others who are on the same road as you. I think the doctors will probably want to do radiation. Look on the internet to find information about the type of tumor your son has. We also have a lot of information on this site about types of tumors. If you are not feeling entirely confident about your son's doctors, we also have a section where we talk about doctors. Dr. Jallo being the one that most people with spinal cord tumors look to for a second opinion. His contact info is here also. There are some positives in your son's situation. It is a low grade type cancer, which means it was caught early and they can do some treatments for it. Your son is also making progress in rehab. With spinal cord injuries/tumors, it takes time to get function back. Remember, when they do surgery, the nerves are irritated and it takes time to heal them. I don't want to give you false hope, but from your post, it sounds like you have some options to look at. I know the minute we hear cancer, we all panic. But there are things they can do now that they couldn't do even a year ago. Treatments change all the time. Mary, I wish you all the best in this, I know it is not easy to watch someone you love hurt. Come here anytime you have questions or just for support. Someone will always answer you. And try posting on the main board also, we do have some caregivers who post there too. Take care Mary, Cindy

[betty]

Mary,
I'm so sorry to hear about your son. I am the on who had the tumor (benign) and my husband the caregiver. I know the family goes through a lot. It also gets tiring being the caregiver. Be patient with your son as he is going through a lot. Don't take moodiness or harsh responses personally. It is a time of post traumatic stress, a time of grieving and loss as our bodies go through this abnormal process of getting back to our "new normal" . Also with the added cancer that makes it much harder and frightening. Prayer and going to God with your concerns are the best advice I can give you.
I went through a lot of crying about my second week after surgery and no one could help me or fix me but just let me be me and process through it all. I think it is easier to let go of some of the emotions but then the men on this board would know best. Stay in touch with the Dr and note changes, etc. My prayers are with you and your son. God bless you all and give you strength.
Betty

[mary]

I can not tell you how much it has meant to me to be able to come here and read all your replies. This week my husband went back to work which means he is in another state for the week. My son and I are alone this week and I am trying to be there for him as well as getting back to work myself. I know that I struggle with wanting to be there for him all the time and knowing I need to allow him to have time alone also.

He has not really been into the PT and OT, but at least he has not refused to go so far. I do think I see improvement but I believe that for him it is just not fast enough. Not that I am surprised that a young 22 year old man might be a bit impatient.

Someone asked me who Brian's neurosurgeon was and where the surgery was done. His neurosurgeon was Dr Jason Schroeder and it was done at our local hospital here in Findlay, Ohio. He has only been here for a short time and it is our understanding that he came here over many other places because of family ties and a feeling of wanting to give back to his own community. We have heard that the hospital spent a lot to get him here too, even purchasing the equipment he would require to do surgery here. We did meet with another neurosurgeon for a second opinion and he said that he agreed with the surgery and that he would place his own life in Dr. Schroeder's hands. We also talked about going elsewhere but in the end Brian wanted this man to do it. It all happened so fast as he was in the ER on Saturday with a headache and operated on the following Thursday. I just prayed we were making the right decision. We have been very pleased with how this Dr has related to Brian and how he has treated us. He even prayed with me before he went into surgery. We definitely wanted a skilled doctor, but also hoped for one that would be compassionate too. I think we got both.

I realized as I spoke with our oldest daughter over the weekend that we have not been able to absorb all we have heard and dealt with. Only as I was sharing about the replies I had gotten from people on here did we find that we had two different understandings of what we heard at the doctor's office on Friday. I was talking about cancer and she said something about being glad Brian's tumor was not cancer. Well, it was only then that we realized that although we both agreed on what the doctor had said, we had not both taken his words to mean the same thing. She believed that when the doctor said that Brian had a low grade astrocytoma that he meant it was slow growing. I took that to mean that it was low grade cancer. Now I need to call the office and see which one of us was right , but I do think I understood correctly. The doctor asked a few times if we had anymore questions, but unfortunately we both thought we knew what he had said. I know that I have a new vocabulary that I am learning and guess I will continue to keep learning what this tumor is all about.

I have so many questions in my head. I know that the doctors do not have all the answers for us but I am sure they have more then we know so far. I think that most of the rest of my family does not want to ask the questions or hear the answers, but I find it easier to deal with the reality then with my imagination. I want to know more about what the future might look like for Brian. I want to know how long someone has gone before these tumors have started to grow back. I understand that Brian's doctor wants us to focus on Brian's rehab and recuperation right now and wants to see Brain get back to work and school and a "normal" life. I just want to know what a "normal" life will look like for him. I can see by the little I have had time to read on here that Brian is very lucky to have only lost some function in his right side and to be basically pain free. I know we have many, many things to be thankful for. I can intellectually be aware of the blessings,but have to admit that emotionally I am not quite there yet. I am still wanting to scream NO and WHY OUR SON , even though I know the answer is "Why not?". I know this site will be a source of information and support for us over time. Thank you all for the kind words .

[betty]

Mary,
Thanks for sharing everything. It is good to get all your questions answered. I am glad Brian is doing as well as he is. Sounds like Brian had a good Neuro Surgeon.
Betty

[chickiet]

Hi Mary,

It certainly can be overwhelming trying to understand everything your NS is telling you. It is a lot to absorb in a very short time. One thing I would suggest is that you request a copy of the pathology report on Brian's tumor, as well as copies of any/all MRIs (discs and reports) for your records. The pathology report would provide definitive information on the tumor based on the actual cells that were examined. Once you have that info, you can either ask your NS to explain it further or do research on the web.

As for how you can best help your son, I would suggest that you make sure you're available and willing to help him, but at the same time don't push yourself and your helpfulness on him. I know that as I recovered from 3 surgeries on my spinal cord that there were times that I wanted/needed help and other times that the help was more a source of frustration for me. I had to feel like I was making progress and I couldn't do that unless I did some things for myself. It is hard to ask for help - it was for me at age 49/50, and I'm sure it is even more for your son. But I do think you will find a happy medium where he can appreciate and welcome the help.

Chris

[Teri K.]

Hi Mary,
I'm not a caregiver I'm one of the survivors, but I wanted to let you know that I was 23 when I had my first spinal cord surgery and currently am 46. I have had 3 surgeries and 2 rounds of radiation treatments but have always kept a pretty good attitude about all of it. I think giving your son the space and time when he needs it and then turning around and giving him that special motherly love is the secret to helping. I know that when I had my first surgery at the age of 23 my Mom was around to help and there were days I just wanted her to give me some space, but I felt such comfort having her with me. Are they doctors suggesting anymore treatment or just follow up to monitor the tumor site?
Teri

[mary]

Thanks again for all your sharing and suggestions. I am hoping to be able to get to the tele-conference tomorrow night and hear some of your stories firsthand.
Brian had two milestones today. He drove for the first time since his surgery and also went to work. He only worked for a few hours and he said his neck was hurting by then, but I think he did OK. He has worked at a local homemade ice cream/candy store since he was 15 and has worked himself into an assistant mangers position so he can kind of set his own hours for now. He is registering for the summer semester at BGSU and talking about moving in with 3 friends next year. I am glad to see him planning for his future, since just a few days ago he was very down. I imagine that he will still have ups and downs for sometime. It has helped me to hear from all of you but especially from those of you who were around Brian's age when you were diagnosed.
I am going to see about getting Brian's reports and copies of his MRI as a number of you have suggested. I push back my fears of what the future will hold and try to focus as much as possible on helping him get on with his life. I just know that unless he receives a miracle his tumor will grow back since they were not able to remove it all. I want to be ready to help him deal with it when it does.

[chickiet]

Mary -

That is wonderful news - he's driving and back to work!! It took me almost 1 1/2 years to be able to get back to driving, and like your son I've had to ease back into work. It's great that he has flexibility in his hours. Those are both wonderful milestones and both he and you should be proud of them.

As for the future, it's hard for all of us. Ups and downs are natural, that's for sure. With a partially removed tumor it must be even more difficult. The best thing your son can do for now is to focus on the positive and to get his body in the best physical shape he possibly can. The better physical condition before any possible future surgery, the better.

Keep us posted on how he does, but we're all so pleased about his progress to date!
Chris