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can't breathe today (Xp11.2 translocation renal cell carcinoma)

kathyoasis
Posts: 10
Joined: Mar 2013

I posted before inquiring about xp11.2 translocation RCC. My 9-year-old boy was dx with this rare cancer. His left kidney was removed in April with other tumors in lymph nodes in tummy. He was on Sutent (12.5mg) for 2 months (4 weeks on, 2 weeks off). He has tumors in chest, stomach and neck now, all in lymph nodes. Today the CT result shows tumors growing bigger in chest and abdomen since last scan in May.

I can't breathe today and can't help crying before him. I'm blessed that he is a positive, energetic boy with great attititude about almost everything. But I feel so hopeless when doctors are still in a learning process of this type of cancer. He showed no side effect of Sutent at all, making me think if the dosage is enough. We see Cincinnati Children's and I sent his slides to Dana-farber, NIH, Memorial Slottering, etc for review and no one has an answer.

I just can't help thinking if I gave him wrong food or supplement to make his tumors bigger. If this has to happen in this family, I wish I can go into his body, take out those tumors and put them into mine. I take away the food he likes, make him drink the smoothies and juicing which he hates. But what else can I do? I feel so abandoned by God.

Life is too painful...

 

Kathy

Darron's picture
Darron
Posts: 220
Joined: Jun 2013

I don't have any answers for you, only ears. I know how I cried and screamed when my diagnosis was at it's darkest point. I can not imagine one of my boys in your son's situation. I try to keep God out of the posts here, but I will pray with all my heart for you and your family.

Please know you are not alone.

Darron

 

Mikeyswife
Posts: 31
Joined: Mar 2013

Kathy,

My 6 year-old grandson has been fighting Leukemia for three years so I do have some idea of how you feel.  Fortunately, we have been lucky and he is responding very well to treatment.  I will be praying for healing for your son and strength for you.  Please do not blame yourself for anything.  I know having a child with cancer is something no parent should have to endure.

My prayers are with you.

Karen

icemantoo's picture
icemantoo
Posts: 1510
Joined: Jan 2010

Kathy,

 

May all of our prayers be with you.

 

Icemantoo

I am alive
Posts: 219
Joined: Jul 2012

Kathy,

There is nothing I can say to make you feel better or to help your son, but please know that we are here for you. We've got your back. We can listen and commiserate. We can share experiences. You and your son now reside in our hearts. We - and there are many of us who are silent readers - send you our love.

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

We pray for your Son and for you and we also pray that the rate of progress towards a cure brings some valuable new treatment for him very soon.  We have to keep that hope alive.  We'll do our best to support you in keeping hope alive.

garym's picture
garym
Posts: 1651
Joined: Nov 2009

Dear Kathy,

Your story hits close to home with me and brings tears to my eyes.  My youngest son, 27 at the time, was diagnosed with Hodgekins Disease (Lymphoma) about 3 1/2 years prior to my RCC dx, I couldn't breath and felt abandoned.  Like you I would have traded places in a heartbeat were it possible.  It took many months of chemo and radiation, but thankfully he survived.  It taught me a valuable lesson, strongly reinforced when I was diagnosed, cherish every second that we have with those we love because we no not when it will end.  There are no words that can comfort you, and no earthly answers to the question, WHY?  I believe one day we will each stand before God, all of our questions will be answered, and we will say "It is good.", until then you are in my thoughts and prayers.

Godspeed,

Gary

MDCinSC's picture
MDCinSC
Posts: 574
Joined: Feb 2013

Kathy,

My heart goes out to you and your son. I have little to offer in the way of advice, but both arms are full of care and concern. 

Tell me how I can help!  I'll do my level best to follow through.

Warmly,

Michael

TillieSOK's picture
TillieSOK
Posts: 232
Joined: Jul 2013

Kathy, I don't have any words....because there are none....except that we are all here for you and all my prayers and thoughts are going out to you aso your son.  Gentle hugs, and know that NOTHING you did or did not do has caused this or made it worse.

GSRon's picture
GSRon
Posts: 1211
Joined: Jan 2013

Kathy.. like others have said.. I too have hope and prayer for you and your son..  I did read your other post, and I hope one of those contacts brings some ideas and help for you.   And if you look at the original start of that post it was years ago.. A lot has happened since then and a lot is going on daily in the Cancer world.  My only suggestion is to contact ALL the top Cancer Docs and researchers.  Not sure how able you are to travel far, but even out here in California we have Stanford which may be worth contacting.  They have some great people there...  

I was hoping some of the great minds we have here would chime in with muc better info than I can give...

Ron

kathyoasis
Posts: 10
Joined: Mar 2013

Thank you all for the prayer. I wish I can stay as strong as you guys for my son, for the family.

I checked that post a lot and there is nothing new because its rarity. We travel from FL to sees Dr. Geller in Cincinnati Children's. I sent his slides to Dana-farber, Dr. Linehan in NIH for review and no one can offer an answer since there is no standard treatment plan. We are willing to travel anywhere that can offer an answer.

Just had a talk with our local oncologist and she offers a Phase I trial. I hurt so much thinking he will lose hair under an intensive chemo which targets brain tumor.

What we are dealing is the rarest of the rare in children. I just can't see hope. Who can save my child?

 

Kathy

TillieSOK's picture
TillieSOK
Posts: 232
Joined: Jul 2013

Kathy, where are you located in FL?  I live in SWFL.  If there is anything I can do to help, please let me know.

BLKJAK
Posts: 108
Joined: Apr 2013

The only thing I have to offer is prayer and a little advice. You can be strong for your family. You have to be strong expecially for your son. If you need an antidepressant or antianxiety medication, by all means get them. It will help you to keep your wits about you when you feel the world crashing down around you. There's no shame in using these things. I use them and it made a huge difference in my quality of life. Don't worry about your child's hair. Hair will grow back and he can always wear a cap, do-rag or handkerchief or just go bald. Temporary hair loss or loss of hair color is a small price to pay for a chance at kicking cancer's butt. Kids also have an astounding amount of resiliency and bounce back from things much easier than we can. Their version of normal is quite different than ours. They've only lived a fraction of the time we have. They adapt better and can cope easier.

Don't ever give up hope. Keep fighting. Keep searching for an expert that knows how to treat what your son has or is willing to take him on.

I wish you the courage and strength to handle this. You need to be there as a fierce advocate for your son.

BLKJAK

alice124's picture
alice124
Posts: 860
Joined: Mar 2012

Kathy - I'm at a loss for words. I am so sorry you and your son are going through such a difficult time. It is heartbreaking to just read.

But let me piggyback Gary's beautiful response to cherish every moment together. Never let what you want allow you to forget what you have. . .

Plenty of ears and shoulders here whenever you need them.

kathyoasis
Posts: 10
Joined: Mar 2013

I live in Gainesville, FL and my son does all the testing in Shands.

I keep telling myself being positive for him. I just came home from the talk with oncologist in Shands. He was jumping up and down at the door and asked me why it took so long. It is hard to think how can an energetic boy has tumors all over his tiny body. He has no symptons, does all the sports as before, goes to camps and enjoys summer. He is willing to do Yoga, tai chi and meditate with me, things usually kids won't do. But the creepy things still grow. I want to scream, but can only smile to him and tell him mommy will take care of everything.

 

 

 

MDCinSC's picture
MDCinSC
Posts: 574
Joined: Feb 2013

Kathy,

I've been searching for some places offering support and bonding. I have some firsthand experience with this one through some very young cancer survivors I've known and loved.  It may help in ways we can't foresee.

http://www.caringbridge.org/

I have also had firsthand knowledge of this Cancer Research Center in Seattle through my then 9 year old nephew's bout with leukemia.  They do amazing work!  It is the Fred Hutchinson Cancer Research Center.

http://www.fhcrc.org/en.html

Keep me posted!  I'll keep looking and asking!

Michael

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Michael, how good it is to see you go way beyond the cheer-leading and jokes and offer such help in a difficult situation - I hope you can help buoy up Kathy's morale and even find more sources of help, since you seem better placed than the rest of us to do so and it's what this forum is so good at isn't it!

MDCinSC's picture
MDCinSC
Posts: 574
Joined: Feb 2013

Texas Wedge,

I finally found something I could comment on with a reasonable bit of certainty.  I've dealt with too many children with too many cancers in my lifetime. It is expertise I wish I didn't have BUT, if I can help Kathy and her son along way with these sources, then there is value in them!

Most of the conversations I run across here are dealing with issues that I have not experienced.  When I say I can't comment, but I can cheer, I feel like I am doing SOME level of good by at least offering empathy and support; acknowledging that even if I don't understand, I want them to win; that they occupy a valuable place on the face of the planet.  I believe there is value in that.

Thanks for the kudos!  See, I AM more than just a pretty face!

Laughing

Michael

kathyoasis
Posts: 10
Joined: Mar 2013

Thank you again everyone for giving me comfort and strength!

Thank you, Michael for the resources. All the oncologists I contacted so far is in the east of the country. I'm thinking of asking people in the west. When I went to the rcc conference in DC, I don't see any experts from western part of the country.

 

Kathy

MDCinSC's picture
MDCinSC
Posts: 574
Joined: Feb 2013

Kathy,

They may not have RCC specialists at Fred Hutch, but they certainly have expertise in pediatric oncology. Keep me posted. I have family in the apartment industry in Seattle!  They too have had dealings with Cancer.  They know the score!

Michael

 

MDCinSC's picture
MDCinSC
Posts: 574
Joined: Feb 2013

I found this through the Fred Hutchinson Website.

http://www.fhcrc.org/en/treatment/clinical-trials/list.74.pediatric.html

I have no clue as to whether they will be right, but here's some hope.

Found another link as well!

Maybe something here!

http://www.curesearch.org/

 

angec's picture
angec
Posts: 621
Joined: Mar 2012

Kathy, will they be able to give him a higher dose of Sutent? What type of trial are they offering him?  There were others on this board with the same rare type of tumor, maybe you can put it in a search here and see what comes up if you didn't already. My memory fails me but perhaps someone else remembers who it was with a child in their late teens or so? 

I know how hard this has to be for you.  Don't think ahead, take one day at a time and focus on that day. The mind is strong and thinking ahead is too much!  If he gets chemo (did they offer that?) don't worry about the hair falling out, that is not an issue, it will grow back, i am sure also your son, who sounds like a trooper won't mind it either.

Praying for you and your family to be strong and to make the best decisions that will be helpful. There are alot of drugs out there now that can offer alot of help.  They just have to choose the correct one.  Have you contacted St. Jude hospital or children's miracle network?  I hear they treat rare diseases and for free! You just might want to check into that. I will do some checking for you as well.  We all band together here and are a family.  Sending you big hugs XXXXXX 

 

Also, there is a sight called smartpatients.com, perhaps you can join and post your questions there.   There are very experienced people there that might be able to offer help.

 

All my best!

angec's picture
angec
Posts: 621
Joined: Mar 2012

While doing some research for you i see that you did already post on SP.  How did it work out with NCI?  Were they able to offer anything?  I am going to private email you...

I am alive
Posts: 219
Joined: Jul 2012

Kathy,

   MD Anderson, recently rated by USA Today as the no.1 cancer center in the states, has a satellite in Orlando. I don't know if they have RCC specialists working out of that site but it might be worth looking into. Since your son's cancer is so rare you would probably go to Dr. Tannir in Houston first and have him weigh in and even direct treatment. But perhaps you could receive the treatment in Orlando, a couple of hour's drive from Gainesville.

Just a thought.

kathyoasis
Posts: 10
Joined: Mar 2013

I contacted Dr. Tanni and he is on vacation. Another doctor talked to me. Unfortunately they don't take any pediatric patients. The person they suggest is my son's oncologist in cincinnati children's. They said they contacted him if they have a patient. MD Anderson says the youngest they treated before (the same subtype) is 17 years old and she lived for 6 years.

NCI offers a trial with Cabozantinib. I'm waiting for my son's oncologist coming back from vacation. Don't like summer. Everybody is on vacation!

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Well, in the long days in which you await his return,  try to take comfort in knowing that you've consulted the top people, you've confirmed that you're in the very best of hands, you've found there is a possible trial and it's with one of the most exciting new drugs. 

You're doing all you can and doing it right.  I hope the wait isn't unendurable but you have a plan and we are all praying it works well for you.   Keep leaning on us here as much as you need and want to.

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