Hi Everyone,
I'm popping in for more support, God knows we are going to need it.
My Son, Dante, dx'd 12.28.07 with IV Neuroblastoma, did the whole treatment beautifully. He is +95 days post transplant #2, and relapse has been confirmed. He has new growth behind his left eye, and in his leg. I am beside myself. We were not prepared for this, not emotionally, not financially, not physically. We were told on Thursday 10.9.08 about relapse. I just don't know what to do. We are back in fight mode, but my God, this is harder then the first time. He just turned 2 last month. We never heard NED, we never heard remission, but we sure as HECK heard relapse.
I'm a mess. We need some direction and some support, I don't know who else to turn too.
Any love and Hugs and you can give for my little man, I would really appreciate it.
Hugs,
Joey
CP: trooperdante
joeybrat2@yahoo.com
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Not such good news
- By Teamtrooper
- Posted October 11, 2008 at 7:52 pm · 7 replies
- In Emotional support for my child
- Shared with the public
Explore topics in this discussion:
Cancer Leukemia Neuroblastoma Liver cancer Hepatoblastoma Palliative care Stem cell transplant Sarcoma
7 replies
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- Newest first
- By Bubbies
- Posted October 12, 2008 at 1:07 am
- Report post
Hey Joey,
I'm so sorry for the news. I only have one thing to say. Relapse does not always mean the worst. With our son, Christian, it eventually did, but the doctors were wrong at how long he had. All you can do is enjoy all the moments, even the bad ones, and pray for as many good ones. Your son is in my prayers and I know the fear of relapse. It is definately scarier than the initial dx, but we enjoyed all the time God granted us, which turned out to be 4 1/2 months longer than the doctors gave us. I don't know what your doctors have told you, but don't give up hope and maybe there will be new things for you to try. I'm here to help if you need it. For us they said there wasn't anything we could do, but try some more chemo. With our son we went on a 2 week vacation and then tried him on one round. It seemed to make him worse, so we stopped and just put it in God's hands. For Christian, God wanted him back, but who knows your son may just have to fight a little more to stay here. All my love and prayers sent your way. Krystal- Christian's mom
- By shauna
- Posted October 14, 2008 at 8:23 pm
- Report post
Joey,
Cancer Sucks!
Krystals right try not to look at how much time you have left. Everyday you have is a miracle (just not the one you were hoping for). My son diagnosed last November stage IV ewings sarcoma wasn't expected to leave the hospital on his own. But he has finished regular rounds of chemo, amputation above the knee(to help improve chances), high dose chemo and stem cell recovery and now we are following up with radiation to give him a longer stay. We have been told he has a 1 in 100 chance to make it to five years. People loose their children everyday in car accidents and such with out the chance to say goodbye. I look at everyday as our little miracle. I'm so sorry that this is happening to all of us. Krystal I'm so sorry for your loss too. Joey, just hang in there and hold on tight to your little one. I'll continue to pray for a miracle for all of us!
~hugs~
Shauna
- By dleach
- Posted November 8, 2008 at 11:37 am
- Report post
Remember that every child is their own statistic- their own experience. They are right that is day by day- but you also need to have an outlet for your anger and frustration at the situation so you can provide the best for your child. Even if it is just a walk down the hall at the hospital- or a friend giving you some time to just go out side and sit- that really helps. Charge your batteries- b/c you will need them no matter what happens.
Also use all the resources that are available to you and your child- from palliative care to child life- that is there for you. They were invaluable to our family.
I am sending you all the love and support I can. Many of us have been on this journey as parents and there are people out there that do know how you feel. Just kiss your little one and know that you are doing the best you can.
- By curecancer06
- Posted November 9, 2008 at 8:12 pm
- Report post
I hate that all of us have to go thru this. My daughter was dx with hepatoblastoma (liver cancer) that spread to her lungs. She was 2 and a half. That was May 2006. She was given less than 50% chance to make it. December 5, 2008 will be 2 years she has been cancer free. She turned 5 yrs old in September. But what a journey it has been. I just wanted you all to know that I think of you guys & pray for all the parents that are going thru things like this. It is so heartbreaking & draining, both emotionaly & financialy. We had a truck reposessed & a house forclosed on. But compared to watching your child fight for their live, that other stuff is nothing. I'm praying for you all & God Bless.
- By Nels
- Posted December 4, 2008 at 8:44 am
- Report post
Dear Joey,
We had the same thing happen to our son, Craig. He was also stage IV NB. He relapsed the week he was to go into transplant.
Enjoy every day, every moment. I'll be praying for you and your family.
Tina
- By godblesscolby
- Posted December 4, 2008 at 4:45 pm
- Report post
I am so sorry for your relapse. I just wanted to say that my neice(Neuroblastoma stage IV) has relapsed twice and is at the moment, cancer free. She was 8 when she was diagnosed and is now 15. So don't give up. My son, who is 2, was diagnosed with the same thing on June 20th of this year. He has gone thru 5 rounds of chemo and was supposed to do the stem cell transplant next. But, his kidneys began to fail after his last round of chemo and has been in the hospital since Sept 25th. He spent 7 of those weeks in ICU. He is supposed to come home tomorrow. Our issue is that now, because of his kidneys they say they can't do any more chemo or the transplant. They will begin radiation but what does this mean for us? For him? I am a total mess, like you. I still haven't actually procesed this whole mess and just feel like a walking, talking disaster. There is hope for you though because my neice is proof of that. Hang in there. God bless you and I hope things get better.
Kris
- By Kerry_1
- Posted April 26, 2009 at 8:36 pm
- Report post
Hi Everyone,
I'm sorry for all of your stories, and mine and just the simple fact that we even need to search out a site like this. I lost my daughter Jess last year in March to leukemia. She was 14. She was diagnosed in June of 07 and gone 9 months later. Please know that I am praying and hoping for you all whether your child is undergoing treatment or you have lost yours. One day at a time, sometimes, one hour and sometimes one minute. Stay strong
Kerry
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