Just learned more about Neuroblastoma

[Esther]

Kevin and Dawn took Braeden to a two day conference in Chicago to learn about Neuroblastoma. The people there were families of kids with that kind of cancer or medical people wanting to learn about it.

I asked Kevin how they felt about what they learned at the Neuroblastoma clinic. He said that they learned a lot about it and had gone hoping to learn that there were big inroads being made in the treatment of it. But they learned that because it is so rare, only 650 cases in the US, they have trouble getting funding for research for it and there really isn't any new amazing treatments on the horizon but lots of things being tried and studied. Evidently there just doesn't seem to be any tried and true treatment for every case. Some things work well for some people and some bodies just don't respond to the same treatments. Some who are cancer free after 5 years seem to have beaten it but others have had it crop up after many years. The majority of patients are very young, under 5 and they either don't live past 2-3 years,  about 50% or survive but many are left with some lingering disabilities. So the outlook isn't very promising.

It was amazing though to hear that there is someone or some organization who want to remain anonymous,  that is a financial backer of research for this illness. The families of patients that attended the conference were issued gas cards, given hotel rooms and the meals were provided. Kevin said the meals weren't just sandwiches either. They were very good. So imagine what it cost to set up that conference. Oh and there was child care provided for the kids too.

Braeden is responding very well to the treatments at the moment. Something has warped his tastebuds though and they were told that it is probably permanent. Things you and I wouldn't see as good, he seems to. Like he wants just mustard and catsup on bread instead of sandwich meat or peanutbutter and jelly. Odd kid likes plain iced tea without sugar. He doesn't seem to care much about ice cream. He doesn't have much of an appetite either during the drug treatment so of course his mother is very concerned about getting food into him, let alone nourishing food. I sure hope she is shoving vitamins in him. She thinks he is also now experiencing a delayed "terrible twos" seeing the whole year of 2 was taken up with the terrible chemo, radiation, stem cell transplant, and isolation experiences.

[Joyce]

Esther, after chemo, it too me over a year to have my taste buds go back to normal.
I also lost the feeling in my extremities: fingertips and toes, and was told that could be permanent, but the feeling slowly returned.
Now, almost 2 years later...I feel like I am back to normal.
Chemo did ruin my eyesight though. 
Need glasses to read, and it's getting worse quickly. 

But as for you, as Braedens grandma, as any family member of such a young cancer warrior....HUGS...and thank you for being there for him.
I couldn't have made it without my family.

[Kittyzee]

I hear your frustration and pain Esther.  Hugs to you and your family.      
 

Oh and I like iced tea without sugar too 

[Sunbeam56]

Are you sure its his tastebuds? It may be his "age". At two-ish, my daughter wouldn't eat anything except strawberries, spaghetti, and french fries dipped in sprite... go figure.  And she is "normal".

Hugs to all of you.
Churchill said - "Courage in adversity, defiance in defeat, generosity in victory..."

[miguynmkoi]

It funny all the things you learn about the human body whether you or a loved one goes through something as life threatening and evasive as cancer, no matter the kind.  The body has to go through so much that healing one part means limiting the function of another. 

As an adult going through the treatments of cancer we already have a preconceived notion and experience of how things work but as a child it's all about learning on the spot.  After all your grandson has been through I think he has very right to be in his "twos."  I'm sure family will guide him through it all as they have been.  And a very fine job of it as well! 

[Esther]

Thanks for the comments Joyce and folks. Joyce, is it the Chemo that I've heard puts a metalic taste in the mouth, especially when one uses metal eating utensils?

On the iced tea, I just meant that most little kids don't like it without sugar. I don't like it with sugar either, maybe a little lemon please. While he's on the Accutane for two weeks, I think it upsets his stomach some. They've got him on some meds for that. The Accutane also makes his skin very thin and tender so who knows what's going on inside? He hardly ever sleeps through the night so are giving him something to help him relax I guess.

But watching him around playing etc, he seems pretty normal. But his cheeks are very red, lips are chapped all the time and has these strong personality swings. Not just the typical stubborn two year old. He will swing from being happy and laughing to crying and doesn't seem to know what is wrong. HE's awfully stubborn but that can be a positive depending on IF he learns to use it that way. He plays well with others (brother, sister, friends and GRANDPA LOL) but isn't much into sharing. Again, yah, a lot of this may be the typical kid stuff. Hard to know.

I had to turn my head yesterday so he wouldn't see me laugh. He was by the pool and reaching way down into the water. His mother told him to back up and not lean so far down. He didn't. Then his father asked him what did his mother just tell him. HE stands up and says, "She said to not lean down so far." So what does he do but immediately kneel back down and start reaching down into the water just like before?  His father yells, "BRAEDEN!!" Braeden stands up looking nervous. His father says, "Do I have to give you a spanking?" Braeden swings both hands back immediately covering his little buns and says, "No, daddy!!" So he knows what is expected, just has to decide who has the upper hand at the moment.

[Jonna]

I think his strong and stubborn personality will help him on this tough road.  What hard news to hear Esther, my love goes out to you and Braeden and all of your family.   I've been overwhelmed at times reading about his difficult treatments and the strong love and support of his family.  It's tough and I know it must be really overwhelming at times for all of you.  You are a strong family and Braeden is lucky to have been born into a family that can support him and love him so thoroughly.   Healing thoughts going to all of you.

[happyoutsidegirl]

My hugs and love go to all of you. I know what it's like first hand. He's a strong little boy and has the will to live because he has such a wonderful family loving him. Bekka is 5 now and still spoiled rotten. We continue to spoiel her too! She is 3 years post opp now and if we get her past 5 years things will start looking great we hope! She had to start wearing glasses as she has really bad sight. Going to the ear nose and throught specialiest on the 29th for hearing check and alliergies. Hope that comes out ok.
Keep up the love and prairs and your little guy will pull threw fine.

[Esther]

Thanks Jonna and Debbie. Did your daughter have trouble getting Bekka potty trained? I hope Dawn gets it done soon because the new baby is due September 7 and I suspect I'm expected to stay up there when the baby comes because the kids will be in school by that time. She keeps saying he just doesn't get it. I think he doesn't care. I think she ought to put "big boy pants" on him when they are outside so the minute he goes, it's real obvious to him. She stays outside with the kids a lot so could try it but I'm too chicken to suggest it. LOL. I don't want her to think I'm being critical even though I am. LOL.

[happyoutsidegirl]

Yes Esther, in fact she still wears pull ups to bed. She is exellant with #2 but times of mishaps with potty. The transplant team says don't even worry about it, it will be ok? I have know severial 2 and 3 year olds who just plain don't care but finnally come around. In fact one of my GS's was that way. Well he is now 14 and potty trained!

[Esther]

I know what you're saying. I'm from the old school where we had the kids potty trained before they knew they could say "no" to things and resist what they were being taught. Don't know if that was good or bad. I used to sit my youngest on the potty with a tooth brush with paste on it for one thing for him to do while he sat there. I used to say that he would grow up thinking he had to brush his teeth every time he pottied. LOL.

Guess I was just lazy. Didn't like changing diapers. Didn't like laundering them. And didn't like paying for disposables.

[mcp]

My Prayers and concerns go out to you aand your family. I watched my Dad go thru chemo with lung cancer. Now my Step Mom is having her first chemo treatment today for lukemia. I can't imagine having a child or Grand Child go thru it. I am sure he has loving family around and helping him. I will keep you and the rest of your family in my prayers.

[Esther]

Thanks MCP and the rest of you guys. It does help me to have you folks to talk to and get ideas and opinions from. Between you all, we have such a wide variety of knowledge and experience. You're like extended family.