Hello. My name is Laura and my Dad, Ted, has Stage 4 SCC of the front mandible. I am just starting to learn all of the terminology so please bear with me. He has a large tumor and we are not sure how much it has invaded the bone. They have found another growth in his neck. My Dad is 70 years old and has received a surgery date of October 25th (which 20 days seems like forever) at Fox Chase Cancer Center in Philadelphia. My Stepmom,Julie and I are his CGs . . . My Dad is scheduled for a composite resection of the mandible and neck dissection.

My Dad is taking this all okay . . .he has a sense of humor that I know he uses to mask his fears.

I am scared to death and cannot thank Lois and Buzz for kindly reaching out to me last week . . . just when I needed to hear from someone who can understand what I am feeling and answer my questions.

We met with the surgeon today and I am home now panicking. I don't know how to do this . . . I never had to help take care of someone after surgery, or radiation. My Stepmom does not do well at all under stress so I have her also to deal with . . .

I have two children 5 and 8. My 8 year old daughter has freaked out the past two nights . . . being totally disrepectful, crying screaming, all while my parents were here. THIS I DO NOT NEED and I am beside myself. She is not normally like this and it was very upsetting to my parents. They need to feel welcome in my home . . . Fox Chase is only and hour from me so they have been staying with us for appointments and my Stepmom will be here the whole time Dad is in the hospital and whatever is beyond. My daughter does know her Pop-Pop has cancer but she does not really understand. I have tried to keep life as normal as possible here while I help my Dad, I am with him at every appointment helping him every step of the way. I do not want to make this so hard on my family, but face it, it is hard. Anyone have advice on how do help the children cope?

How about my Dad? I don't know how he will look after the surgery, if they have to remove part of his chin and lip area . . will speech be difficult? He only has the use of his left hand as he was born with a smaller right arm. Anyone have shoulder difficulty from the neck dissection? They will remove the bone graft from his leg, is this really painful? Is the jaw area painful? ?He does not want to know any of this . . . I just want to know so I can be there for him.

I have so much respect for this forum and for all of you and what you have been through . . . I hope to someday be able to offer some support and comfort in return.

Laura

Laura,
I wish I had a magic wand a could make everything all right, I don't. Soooo...take a deep breath and relax. Have a Hug! Here is my 2 cents worth.
You are being a loving, caring respectful daughter. Your father, I'm certain, is proud of the help and support you have given and are yet to give.
Your 8 year old daughter is the same age as my Kaitlynn. I am no expert on children but my opinion as to why she is acting out would be this. She has recognized things are not normal, she has recognized that you are upset and spending time going with your father, her normal is changing, your attention to her is changing, and she is scared and frightened. She probably doesn't understand cancer and the process of treatment and recovery.
I would suggest that you set aside some time for just you and her. Tell her you love her, answer her questions without going into more detail than you need to, and try to reassure her that things will get better. I know this is a difficult task but you need to show her that this situation is only temporary for now.
Try and have Pop-Pop spend some time with her and see if he can help her understand. He may be scared and not want to dicuss the situation but, if you explain to him the affect that the whole situation is having on her maybe he can help. His spending time with your daughter may help him as well. If I was in the same situation with Kaitlynn this is what I would try and do.
You should talk to your step-mom. Whether she likes it or not she will be involved in the process. Tell her you need her help and support and that you will give the same in return. She needs to be an active player. She also needs to understand that you are a mother who cannot drop everything and ignore your children.
Recovery:
Your dad is going to experience a lot of things. I am sure his doctors will make sure he has minimal pain and discomfort. You should expect that his jaw will be sore, his neck and shoulder will be sore, and his hip where the bone graft is taken from will be sore as well. How long? How much pain? This is different in every patient. Make sure you talk to the doctors about pain management. Ask as well about how much change in appearance he will have. Explain that you would like to prepare your children for this.
You are a strong and caring person but, realize that you cannot be all things to all people. Do the best you can and don't be afraid to ask for advice, help and information.

I hope this is a little helpful.
My thoughts and prayers are with you and your family. E-mail or Pm me anytime if you want.

Cheers,

Mike

Thanks, Mike. Your kind words mean a lot.

Isabella and I have been talking on and off today. She is more worried about me, she does not like to see me cry. We talked about cryiing and she told me that in health class they are learning about stress. So SHE WAS HELPING ME with suggestions to deal with the stress. She does know more about what is going on . . . I am letting myself realize that I can't be all things to all people. We have been talking and we all agree that crying is okay . . . I am not going to hide from them, they need honest answers and need to learn how we deal with the good, bad and in this case the ugliness of life. She also called my Dad last night and she apologized to him. Boy, parenting sure is a journey and they amaze me every day. We need to just do some fun family things this weekend to make it seem normal around here.

I am learning to ask for help, which is why I am at OCF. I was never really good at that before. Now if I can only convince my Dad to just let us do what we can for him. He does not like to be "babied".

Take Care, Mike. I see you are 10 Year Cancer Survivor . . . you are an inspiration!

Laura

Laura,Mike's reply was brilliant and i am sure you took great comfort knowing that he and many others will be here if you ever need anything,i know i did.
Just one little word of caution laura.the surgery your Dad will require is hard for young previously tough and healthy men,so for a man of his age it is going to be monumental.His recovery may not be as straightforward or as quick as you may hope,so dont expect too much,too soon.
I am sure you will get through it,but i expect a few more tears will be shed.

Good luck for the 25th

love liz

Hi Laura,

Welcome to the OCF and I am very sorry to hear what is going on with your father. I'm sure that you know that Fox Chase is one of the premier cancer centers in the US. I was treated there in 2005 and more than likely your dad is being treated by the same doctor. Although my cancer was not the same as your dad's I can tell you that he is in good hands. Everyone at Fox Chase is at the top of their field.

As you can see below, I live in Yardley and I'm sure that we don't live too far apart. Feel free to email me and let me know if there is anything I can do to help. In case you don't know how to get the email link, just click on the second icon from the left next to the time of my post.

Jerry

Hi Laura,

My name is Minnie and I had the same surgery your father is preparing for. While Liz is correct to say that it's a major surgery, I still think that your father can do great with it. I've seen plenty of older people, much older than your father, come through it with flying colors.
Keep in mind that what they are removing is not on the outside but on the inside, so it won't show. He'll have alot of swelling under his chin for awhile, but that will resolve. The neck disection may very well cause his issues with his arm and shoulder. I know that my arm is weaker than it was before but it doesn't get in the way of normal life, just something I need to be aware of. Here are some things for you to know about his surgery:

1. He will have a trach, which was the scariest part for me but some didn't mind it at all. They take the trach out after approx. 4 days and he will be able to talk again. The area heals quite quickly and will be a non-issue.

2. They'll keep him sedated for the first few days after surgery, to keep him from moving around alot. They like to keep the head positioned in a certain way. I was asleep for the first 3 days.

3. He will have alot of stitches and staples but PLEASE don't let it frighten you. My own mother has to look closely to see where mine used to be. But, it does look horrific at first!! The usually cut down through the bottom lip then through the chin, up under the neck, so that requires alot of stitching.

4. He'll have drainage tubes from his neck and in his leg. They look awful but didn't hurt me. The DO sting when being taken out but that won't happen for about 4-5 days.

5. They'll most likely put a PEG tube in for feeding and will have him hooked up to a feeding pump. Just watch him for diarrhea, I got a bad case of it.

6. His donor leg will be in a cast for the first week or so and will most probably be the cause of most of his pain. I had NO pain in my face and neck area, it was ALL in my leg. I was on a morphine pump for the first few days, but after that had to count on the nurses to control my pain. They did a poor job of it. Please listen if your dad tells you that his leg hurts and MAKE the nursing staff listen to you that he's in pain.

7. By day 8 I was up and walking with the help of a "boot" and a walker.........and another really handsome "walker" that was my husband ! It made me feel great to be mobile but very tiring. I was younger, 41, so your dad may take a few more days to get to this stage.

8. I went home on day 11 minus quite a few of the stitches and staples but still swollen. My leg did develop a minor infection in the incision line so keep a close eye on that at home.

9. Make sure your dad has adequate pain medication to go home with. Also, look into some home health nursing care. We had one for about two weeks and it was great.

10. I was scared to death to try eating again. I finally did and found out that I could eat every bit as good as I could before I had the surgery. I simply couldn't eat or chew on my left side. Within days I was eating exactly what I ate before my surgery. I didn't use the tube at all for nutrition until the radiation that I started 6 weeks later began to take a toll on me.

11. Your fathers leg will be sore and weak for awhile but not all that long. Four years later, mine is still a little weaker than my other leg, but I can run if I NEED to. I wouldn't want to have to run for long and try not to jump on my leg. But for normal, everyday life, I never notice anything wrong with it. The scar is hardly visible and I love telling little kids that it's a big shark bite!!

Concerning your daughter, bless her heart. Our youngest was 9 when I had this surgery and she did seem to be more emotional than before. My mother came and stayed with us for a few months and of course the entire homelife routine is tossed. I would suggest that you have your step mother give your little one some extra attention, try to transfer some positive feelings there so when they are staying at yoru house, she will gravitate to the step mom. Have her read to her at night, or do her fingernails with polish, etc. It worked wonders for my mom, who is a pro with fixing family situations, and she had my house rolling smooth again in no time. To this day, she is still asked to do nails and toenails when she comes to visit. Your father will have enough to deal with right now emotionally, he can't help your daughter. Your dad needs YOU right now. Sounds like step mom struggles with the emotions of it, so let her do the "fun" stuff with your daughter. I bet it helps them both.

Write me with any questions you may have. Also, Wayne, another great guy on here, had the surgery and he will be by to answer I'm sure. No two situations are the same and he had things happen that I didn't, and vice versa. Take care and stay with us, we're here to help.

Minnie

Minnie, you are an angel . . . were you not just in the hospital a few days ago? I am so glad it was good news for you. God Bless you. I am so grateful for your info and guidance. We go back to Fox Chase tomorrow to meet with a Rehab Dr. and Physical therapist and then we are set until the 25th. I am sure I will be in touch . . until then a big hug for you and Take Care!!

Laura

I cannot believe how lucky I am to have found you all.