Reoccuring Stage IV Neuroblastoma not responding
 

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06-22-09 09:54 PM
Harley
Reoccuring Stage IV Neuroblastoma not responding
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My two year old son, Harley, was diagnosed in August of 2008 with stage IV Neuroblastoma just before his two year birthday. He went through several surgeries, five rounds of chemo, two and a half weeks of radiation, immunotherapy, and a bone marrow transplant. I thought it was almost over and things seemed to be going well for him. He is extremely active...like a little monkey. He climbs on the window seals in the hospital and runs up and down the halls. During transplant he broke his chemo line twice because he was so active. He definately kept the nurses and I on our toes. He seemed to be improving and we were able to remove his lines. We did routine scans about a month and a half out of transplant when we found out he had three new Tumors ( two in his leg surrounding the knee and one in his jaw). We gave him radiation treatments for the one in his jaw so that he could eat and to help with pain. He doesn't qualify for any clinical trials because he has active tumors and because his platelet levels are too low. We tried Cytoxin for 6 weeks Zometa every four weeks (which we only got to do once) and he didn't respond. He now has another tumor in his skull. He is currently recieving a combination of oral (temodar) and IV (irinotecan) meds administered every day for one week followed by a two week break.  We get our new scans mid July and I am so scared. I have been overwhelmed with anger and grief and I don't know how to be there for the others in my family.I have a six year old daughter and I try to be patient with her but she is so defiant and I don't have the energy to deal with her tantrums. My husband won't deal with anything because he says he won't until he needs to. I don't know what to do with myself.  I just want to go back to a normal life and work. I miss the normal everyday chaos of getting up and trying to gwet the kids ready for school while getting myself ready for work. I just graduated college and I can't do anything. I can't plan anything in our lives because we don't know what direction we are heading. I know there are others out there that have almost identical stories and If anyone has any encouraging words or miracle stories to share I'd love to hear them. Thanks!

Rebekah Hammack

Houston, TX

06-28-09 09:20 AM
Drvasilios
Re: Reoccuring Stage IV Neuroblastoma not responding
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Rebekah, I truly sympathize with you.  One thing that has helped my wife is having her parents help her.  I don't know your exact situation, but the more people lending a hand the better.  Our only child has NB, Stage IV, and he is 3 yrs. old.  I am flying back and forth every weekend to be with him and my wife since we live in South Carolina, but he is being treated in Chicago.  Times are very very difficult, and we all are living our worst nightmare. It is easy to feel anger, hate, and depressed.  We turned to Faith knowing it is in God's hands. Best of luck, and we'll be praying for you and your son,

 Vasilios

06-30-09 11:39 PM
Harley
Re: Reoccuring Stage IV Neuroblastoma not responding
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I am sorry to here about your child. Ido have a wonderful support system and it has definately made a difference. I too have turned to my faith. My family and my faith are the only things pulling me through this. I am sorry to hee that you have to travel back and forth; it must be tough. Luckily we live about 45 minutes away from Texas Cidrens in Houston. However, if he ever qualifies for treatment we may be going to New York for a while. He is very sick nd sleeping more and more. We have scans in two weeks and I am pray everyday for good results. We'll just have to wait, although my patience ais waring thin.

Rebekah

07-01-09 09:03 PM
Mariah1800
Re: Reoccuring Stage IV Neuroblastoma not responding
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Rebekah:
In your posting, you asked to hear about any miracle stories...well, I have always been told that I am a miracle story!  I just started a thread, but in case you did not see it, here is my story.  I am a 30-year-old neuroblastoma survivor.  I was diagnosed at the age of 1, with a tumor wrapped around my heart and spine.  At the time, there was nothing that could be done for me.  Luckily, we live only 1 1/2 hours away from Mayo Clinic in Rochester, MN, and I became an experimental patient there.  I went through 16 rounds of radiation, a few years of chemotherapy, and surgeries.  At my fourth birthday, we finally found out that I had been cured!  Due to all of our experiences together, I am extremely close to both of my parents, and my brother.  I was my parents' first child, and they were a young couple when I was diagnosed.  They held it together through faith, family, and family friends.  It was difficult, but we all made it!!!  All the best to you, and if you ever need to vent, I am a great listener!!!

09-04-09 01:29 AM
roseanntodd
Re: Reoccuring Stage IV Neuroblastoma not responding
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 Rebekah,

 I feel your pain. Literally. The best my daughter, Rosemarie, has been is stable since she was diagnosed 2 years ago at 13 months old. My 9 year old daughter does everything to push my buttons. My stress, anxiety, and overall exaustion make me want stay in bed with my blaket over my head and pretend my life is normal again. I have several suggestions that I hope will help you.

First of all, find a support group. If there isn't one in your area for caregivers of children with cancer look for someone with whom you can talk, vent and cry with. I have a friend that I go on cry walks with. We go to the track at our local high school and vent and yell and worry and talk about everything on our minds. I always feel better after I voice my problems. and cry I almost alway cry at some point during our walk. The track is a great place because we don't have to worry about trafic or crossing the street or looking silly when we yell our cry. 

My second suggestion is to take some time for yourself. Taking a break from my family is one of the best things I can to help me and them in the day to day things. Pick something that can take your mind of all the things you are worring about. I like to go to the movies. I can pretend I am someone else, somewhere else for an hour our two. Take up a hobby. I have a group of friends that get together everymonth or so to knit. We are a very social group. Initially after Rosemarie was diagnosed I had a hard time partaking in the conversation as my mind was running a mile a minute thinking about several cancer related things but after awhile I was able to follow the conversation. 

Take things a day at a time or an hour at a time if need be. That is what everyone told me in the first few months after Rosemarie's diagnosis. It helped alot. It is something I still use today. Rosemarie is on a combination of chemo treatments currently. I think in terms of 3 weeks. I will plan something only within that time frame beforel the next chemo starts. I don't think of her being on chemo forever, though it is something she could be on for years. I will only think about what will happen before she has scans again. If I am only thinking about what is going on this month I can't worry about Christmas or Easter or school next year. 

Look for small miracles everyday. Some of the others that have responded talked about their faith helping them get though this. Even if you are not overly spiritual or are mad at God, you can learn to apprieciate the things you have. Often when I am most upset I forget how lucky/blessed I am. I am blessed that we went to the right doctor at the right time 2 years ago that scheduled the one test that came across the cancer in her body when they did. She could have died without a diagnosis. I am blessed that my husband and I still are a united front when so many have given up and separated from the stress of it all. I am blessed to have beautiful 3 year old who has been developing and growing inspite of the cancer that riddles her body. Make a list and keep it with you to read when you need. Continue to look for miracles. It may not be in His plan for your son to be cancer free. If that is the only miracle you are looking for you will miss numous others happening around you everyday. 

God does not make mistakes! This one is hard for me to accept some days. He does everything with a purpose even if we never see it. He knows you are the perfect mother to take Harley though this jouney. I imagine you do a good job of taking care of him. I imagine you make sure he has every comfort that can be offered him. I imagine you make sure he has the best doctors and treatments you can find to make him better. I imagine you are doing a great job of holding things together even if you yourself don't always see it. I imagine you would do ANYTHING you could make your family whole again. I imagine you have internal strenth that few would only dream possible. I will imagine you some peace in your life as well where ever it is possible. 

I hope my suggestions help you. I hope my encouraging words will give you the power to continue this journey. 

If you need someone to talk to or encourage you more leave me a message on the website for my daughter that I have www.caringbridge.org/visit/rosemarietodd 

Roseann Todd