The Phoenix

Sunday, June 04, 2006

Hope

I never do this, but I have to talk about something out of my personal life just for this one post. So please forgive me for stepping out of my wacky science shoes for just a moment...

My five year old son, whom I affectionately call The Dominator, recently learned one of his preschool buddies has just been diagnosed with leukemia. His classmate and friend, Logan, had missed an entire week of school, and a letter home from the school broke the news to his classmates.

The Dominator is your typical first born. He's a leader, follows direction well, is very responsible, and he is always concerned about others. There is so much change going on in his young life right now, and this was just one more thing weighing on my boy's young mind. Is Logan going to be alright? Is he going to die? Can I get sick like that too? What is leukemia?

I really had no idea what to say. I floundered, and I'm sure I probably confused The Dominiator even more. I didn't know anything about leukemia. All I knew is that it was a form of cancer. So I did some digging. Here is what I found:

* Leukemia refers to cancers of the white blood cells. When a child has leukemia, large numbers of abnormal white blood cells are produced in the bone marrow. These abnormal white cells crowd the bone marrow and flood the bloodstream, but they cannot perform their proper role of protecting the body against disease because they are defective.

* Leukemia is the most common cancer in children and adolescents. It accounts for about one third of all cancers in children under age 15.

* Although there is a genetic factor, and scientists are learning about environmental factors that might affect the likelihood of a child developing leukemia, most leukemias arise from noninherited mutations in the genes of growing blood cells. Because these errors occur randomly and unpredictably, there is currently no effective way to prevent most types of leukemia.

* Treatment includes chemotherapy, which is a method of using drugs to kill the cancerous cells, and to keep them from dividing. The drugs are normally injected intravenously, through the spinal column, or directly into an organ. Oral drugs are also used in combination.

* The 5 year survival rate for those with acute lymphocytic leukemia (bone marrow leukemia) has increased to 85% thanks to advances in medicine and science.

* The 5 year survival rate for those with acute myelogenous leukema (myleoid cell leukemia) has also increased, up to 52%.

The Dominator's last day of preschool was just this past Thursday, and Logan was allowed to visit his classmates just for a few minutes. Although chemotherapy is such a difficult and draining treatment physically and mentally, chances are very good that Logan's cancer will go into remission.

Now that I've done my research, I feel much more educated on the matter, and I'll be able to speak to him about leukemia more intelligently. I've got some statistics, quotes from the American Cancer Society, and some facts from several pediatric oncologists.

But tomorrow, when we talk about his friend's illness...I will just talk to my son about hope.


National Cancer Institute
The Leukemia and Lymphoma Society
Leukemia Research Foundation


71 Comments:

Blogger Jim said...

you might avoid "leukemia" and use "blood problem" -- a five year-old knows what blood is and can usually comprehend "problem" or "disorder"

6/03/2006 11:31 PM  
Blogger The Phoenix said...

He came to me asking about "leukemia" actually, so I'm thinking the teacher talked to them about it a little.

Since I work in the medical field, my son probably had higher expectations of my answer the first time around.

I think I'm better prepared now. I'll talk about Logan having a "blood problem," but I'll focus on the positive: chances are very much in Logan's favor of beating this.

6/03/2006 11:41 PM  
Blogger Michelle said...

Phoenix, there is hope. My 4 yold niece suffered from the first kind you mentioned. Suffered quite badly too. Today she's a healthy 14 yold and been in remission for a number of years :o)

I wish your sons buddy all the best :o)

6/03/2006 11:44 PM  
Blogger Pixie said...

To deal with life threatening illnesses is hard at anyage but worse I find for children to deal with. As you said he has come to you asking why etc you just have to be as honest as you can and try to be as positive as possible.
I wish Logan all the best.Chances are inproving all the time.

6/04/2006 3:29 AM  
Blogger Leazwell said...

Youth is wonderfully resilient and medical advances awe inspiring. You're absolutely right to accentuate the positive. We had a senior this year diagnosed w/Hodgkins Lymphoma. After chemo and radiation she is clear of all cancer and they didn't catch it early either.

6/04/2006 3:54 AM  
Blogger Jamie Dawn said...

There is a litle girl from our church who has the disease. She was diagnosed about two years ago, and is doing quite well.
Hope is the right avenue to take with yout son. You can tell him that there are some very sad things in this world, but that we never give up or stop trying even if we face bad news.
This terrible thing will help you have meaningful talks with your little boy and teach him some valuable life lessons.
I hope his friend has good results from his treatment and is able to come back to school healthy and in remission. There is hope.

6/04/2006 11:50 AM  
Blogger :P fuzzbox said...

Hope is eternal. Medical science has advanced far in the treatment of leukemia. I wish you luck in your talk with your son. I know you will do fine.

6/04/2006 12:08 PM  
Anonymous Bruce said...

Not being a father, I can't begin to imagine what you'll have to tell your son, but I have no doubt you'll do everything in your power to try and get him to understand. As fuzz said, you'll do fine...

6/04/2006 12:28 PM  
Blogger Jay said...

It's hard to explain to a child things we have trouble with ourselves - and I don't mean the medical jargon, I mean the bigger questions in life that invariably come up when life seems less certain. But kids intuitively understand more than we think (and maybe more than we'd like).

Yesterday I happened to post about a 25 year old in his last days of a battle against leukemia, one that has chased him through adolescence into adulthood, and has been very aggressive. The odds are good for a kid who has been newly diagnosed, and I hope for him the very best. But it's an unpredictable disease, it doesn't always follow the rules.

Good luck with your son.

6/04/2006 12:47 PM  
Blogger Jim said...

am I the only one who thinks the school handled this terrible -- why did anything have to be said to the rest of the kids except maybe that their friend was sick -- the rest of it sounds like a real invasion of privacy, and the little boy will now have to go through school known as the "boy with cancer" -- it sounds like the school is making a "big deal" over something that should have been treated with more respect and discretion

6/04/2006 1:15 PM  
Blogger phred said...

My 5 yr. old grandson asked me, where is Heaven?
I pointed up.
'' Then why are all the people that died ( he pointed down ) down there''? I suppose he was refering to the grave.
Sooo, then I tried to explain ''soul'' to my grandson.
I feel like when a child ask a question..we should answer, no matter how hard it might seem.

You have done your homework, you have done your best to answer your son, you are a Good father.

Some answers are just, Hard.

6/04/2006 3:58 PM  
Blogger The Phoenix said...

michelle, that's great your niece is doing well.

pixie, I can't stand watching a child suffer. I think kids are often times more brave than the parents.

leazwell, Thanks for your story, and for stopping by.

JD, It's amazing how many of us know someone that has/had cancer. It's opened up a whole new can of worms. Now he's asking about life/death/mortality.

fuzz, Thanks buddy.

bruce, These are the moments where no amount of training or reading can prepare you for. The best I can do is to talk to him from the heart.

jay, Yes - it's very unpredictible. If the cancer goes into remission, there's still 2-3 years follow up treatments. You just never know...it could stay away for good or pop up out of nowhere.

jim, I looked over the letter once again last night. The teacher visited Logan in the hospital last week, and the parents agreed to all the information in the letter. They are requesting help in any way. Logan is one of four children, including one 20 month old and a 4 week old newborn.
They need help bad.
I think that's why they went ahead and put so many of the health-related issues out there for the parents to read - to solicit help from the other parents.

phred, You're right. Some things are just so hard to explain. The worst thing you can do it to ignore the question or distracting your kid instead of trying to answer. Thanks for your encouragement.

6/04/2006 4:18 PM  
Blogger Karen said...

Yes, we all must hang on to *hope* because it's powerful.

Just by knowing what I've heard over the past several years, leukemia has come a long way with positive results.

Thoughts and prayers are with Logan and his family.

btw, Phoenix, you might want to share all these positive comments with your son.

6/04/2006 5:16 PM  
Blogger Carmel said...

it's hard explaining things to kids sometimes. Getting educated on it and answering his questions confidently is great. Good job!

6/04/2006 8:18 PM  
Blogger kim said...

My step-cousin had childhood leukemia and was diagnosed when she was 6. It's a long tough battle (chemo's just no fun for anyone, much less a child) but she's in total remission now, and has been for a number of years. The other good news to pass along to your son is that St. Louis has some of THE BEST oncologists in the world. Children's Hospital is incredible, as are several other local hospitals. Logan's got a heck of a fighting chance to beat this.

Is the school doing any kind of fundraiser for Logan's family?

6/04/2006 8:35 PM  
Blogger O Ceallaigh said...

Sounds to me like the school handled things just right. The facts might be hard to handle, but I reckon that's nothing compared to what kinds of stories the kids make up and pass on in the absence of real data. Honesty really is the best policy, and I'm glad that the parents and others involved chose to see it that way.

Good work, Phoenix, keep on keepin' on. My thoughts and prayers are with that family, and with yours.

6/04/2006 8:45 PM  
Blogger Phats said...

Wow that's so sad, it's times like these when kids need their parents the most! I am glad you shared this with us. Will think about Logan!

6/05/2006 1:12 AM  
Blogger Keshi said...

Hope is what we all can cling on to in any situation...I pray for ur son's friend to be well soon!


Keshi.

6/05/2006 1:39 AM  
Blogger phlegmfatale said...

wow - that is amazing. Blessings to the Dominator's friend and his family. It's so unthinkable to have to deal with dire illness in a child - it should never happen. What a world, eh?

6/05/2006 2:05 AM  
Blogger DaBich said...

My thoughts and prayers are with Logan's family and with YOURS also. You have a good handle on this, keep up the good work.
As Kim said, is there a fundraiser being held?

6/05/2006 6:05 AM  
Blogger Stacy The Peanut Queen said...

A truly wonderful and touching post, Phoenix. Hope is one of the biggest words in the english language, isn't it?

6/05/2006 7:54 AM  
Blogger ozymandiaz said...

Good job.

6/05/2006 8:04 AM  
Blogger Cari said...

What a courageous little one...

no matter if he understands now or later....he is dealing with something that he will never forget.

6/05/2006 8:12 AM  
Blogger angel, jr. said...

I think that is the best thing you can do is to teach a child about hope.
I've always believed that hope is the best "lecture" any person struggling with uncertainty. It directs a person's attention away from the problem and points them towards looking for tomorrow.
It literally breaks my heart to hear about children with leukemia.
I'll say a prayer for Logan.

6/05/2006 9:00 AM  
Blogger BrianAlt said...

Always rough. I had an aunt that died of leukemia before I was born.

You're doing the right thing. Take it on and address the fears.

6/05/2006 9:08 AM  
Blogger KC said...

I'm sure you'll do fine when talking with your son. I'm glad he came to you with his questions. At least you know that he depends on you to help him through this. It's good to have this kind of open dialog with your child.

6/05/2006 9:48 AM  
Anonymous Jennifer said...

How devastating for any parent to deal with. I'm glad that science has given us a step up over the older stats where a dx like that was a death sentance for children.

You'll definately want to focus on the positive, keep answering questions when he asks, thats all you can do.

6/05/2006 2:12 PM  
Blogger Mimi said...

Thanks for sharing. That kind of situation is so hard for any parent. I just can't imagine howto talk to my son about it, let alone deal with it if he had it. They have come far with this disease and hopefully one day we will kick its ass!

6/05/2006 2:24 PM  
Blogger Grafs said...

It is difficult watching others suffer with something that you know you could get. My time in the oncology ward made me think twice about social smoking and stuff. Then i figured it out: Sure things are preventable, but you just have to enjoy life to some degree. There were people in there who were younger than me, with a freak cancer. Tell the Dominator not to worry!

As a side note, some doctor told my mom that I looked just like the type of child who would develop leukemia. My mom worried insanely for nothing.

6/05/2006 5:23 PM  
Blogger LostInTX said...

Faith and hope are often all we have left in desperate and trying moments. I'm sure you gave him a great lesson.

Might I also add that I think you are an incredible father for researching information to give to your son. So many people just try to sugar coat the issues they don't want to deal with and fail to teach their children what's real. I hope to be a parent of your caliber one day. :)

6/05/2006 5:50 PM  
Blogger Big Pissy said...

Here's hoping little Logan will be ok.....

You did the right thing by explaining to your son.

Kids understand more than we think they do...

6/05/2006 6:48 PM  
Blogger The Phoenix said...

Thanks so mch for everyone's encouragement. Part of the reason for me posting about this was because of my ignorance of children's leukemia.

Knowledge is power, but so is hope and positive thinking.

6/05/2006 8:07 PM  
Blogger vani said...

very touching post- so sad about his classmate, being so young and all.

i must of been a little older than your son when one of our classmates in school got sick with cancer- i don't remember much except her losing her hair, getting real thin and pale...and the last day we saw her alive. it was halloween- i remember she had allot of make-up on, she came to class only for the time we had our party and then she left. we never saw here again, shortly after they made an announcement she was gone.

although i don't remember the details of her death- i will never forget her face that last day we saw her- she was so happy to be dressed up in her costume, being part of the class- just being a kid, one last time.

6/05/2006 9:43 PM  
Anonymous the weirdgirl said...

This is a parent's nightmare! For Logan's parents and all the parents of his classmates. I remember when my youngest brother started asking questions about mortality and illness, he was six or seven (I was 19 or 20) and it was so hard!

It sounds like you're doing great, Phoenix. Hang in there. My thoughts and prayers are with your son and Logan both.

6/06/2006 1:11 AM  
Blogger RAVEN the PITA said...

How sad. Sounds like the dominator is a great caring kid too - it would be good for his schoolmate to have him for a friend... good luck with the talk!

6/06/2006 2:01 AM  
Blogger Sherri said...

oh, I'm so sorry to hear about Logan! I hate to see kids suffer, it breaks my heart.

When my grandmother had cancer I visited her in the hospital several times, and there was a tiny little girl in there who had some form of cancer. I would see her roaming the halls with her IV rack and teddy bear, it just absolutely killed me to see it.

6/06/2006 5:00 AM  
Blogger David Amulet said...

I did not know that the survival rates had risen to that level -- silver lining on a very dark cloud.

-- david

6/06/2006 5:21 AM  
Blogger Curare_Z said...

"The Dominator." That's cute.

I echo others sentiments: You're a great father for trying to answer honestly and then "following-up" by doing your research Phoenix. And, you should be thankful The Dominator is curious and comes to you asking these questions instead of relying on the half-information likely handed out at school!

6/06/2006 7:10 AM  
Blogger Yawn said...

Don't worry Phoenix. Leukemia these days is like a bad case of acne but with a lot of vomiting and nausea. It REALLY sucks for the sufferer and family but is quite curable. My sister had it about 15 years ago and the only question anyone has now is if she can have babies or not.

6/06/2006 9:47 AM  
Blogger Kyahgirl said...

This is an excellent post phoenix and you're a great Dad to help your son with understanding.
Kids are amazingly open and resilient and find the best approach is to be matter of fact about diseases and caring about the individual. Kids 'get' it and can process that.

6/06/2006 4:31 PM  
Blogger Jamie Dawn said...

You are a good, caring dad. You will handle all his questions well.
Kids are like sponges. They drink it all in, and they can grasp a lot more than we think.

6/06/2006 7:28 PM  
Blogger The Phoenix said...

I'm going to be helping out, as a couple parents are mobilizing and organizing shifts of people dropping off dinners and babysitting Logan's other three siblings.

Hopefully, I'll be able to bring The Dominator by to visit his buddy.

Again, thanks so much for everyone's encouragement.

6/06/2006 8:18 PM  
Blogger Laurie said...

I cannot imagine having a child with an illness like that; I count my blessings, and my prayers go out to little Logan.

You're an awesome and thoughtful dad, J.

6/06/2006 8:49 PM  
Blogger Jenna Howard said...

I've been thinking about this post since Sunday and how to respond. Sadly all I can do is stare at the cursor. I hate it when kids are sick. I just hate it.

So I'll just add my hopeful thoughts to the collection here.

6/06/2006 11:22 PM  
Blogger Karen said...

Phoenix, did you see this...

RALEIGH, North Carolina (AP) - The Carolina Hurricanes are finding extra inspiration from an unexpected source in the NHL playoffs.

Julia Rowe, a 6-year-old friend of coach Peter Laviolette's three children, is battling leukemia for a second time. Laviolette has publicized her fight to raise awareness about the disease.

6/07/2006 11:06 AM  
Anonymous delmer said...

I never know what to say when something serious comes into a person's life. I've always got a comment regarding off-the-wall stuff. It's a serious shortcoming on my part.

Just the other day my youngest was all worked up when he found out my uncle (who had died recently) had been cremated.

It troubles me to see children in distress -- Logan and The Dominator. The early part of their lives, ideally, would be trouble-free.

It's good to hear that Logan has pretty good odds of beating this.

I hope The Dominator doesn't spend too much time worrying over Logan. I do admire his compassion.

6/07/2006 12:01 PM  
Blogger cube said...

This is so sad. Poor little boy. I hope he beats this awful disease.

6/07/2006 12:40 PM  
Blogger LBseahag said...

This was very inspiring. This is something we rarely think about.

6/07/2006 9:08 PM  
Blogger DaBich said...

I hope you and Dominator are dealing with this as well as can be expected. Just thinking of you :)

6/08/2006 6:56 AM  
Blogger starbender said...

How very sad!
:""(
My hopes and prayers go out 2 Logan.
I hate 2 see sick children, It breaks my heart.

6/08/2006 9:04 AM  
Blogger Remy said...

IF you can get word to the family, have them get in touch with Give Kids The World. It's an organization in Orlando Florida that helps kids with major illnesses. I think will pay for a family vacation in Orlando when the child is able to travel. It's a great way to help the family heal.

6/08/2006 10:20 PM  
Blogger Carmel said...

I clicked on your poadcast, is that you? I like it.

6/10/2006 2:41 AM  
Blogger jay lassiter said...

Hard to know what to say. how sad.
just tell him the truth. kids are smarter that we precieve them to be.

Hope his young friend is able to recover.
very sad lesson.

6/10/2006 1:31 PM  
Blogger Eve said...

THe thought of having to take that road with either of my kids is horrifying. ~sigh~

6/10/2006 7:55 PM  
Blogger Webpirate said...

I'm sorry friend. You will find no comfort in these words I post, for I can not convey what I would like to say over the Internet. Know that you are not alone in your fight and you have lots of friends for support, if need be feel free to vent frustration, concerns, or out and out break down about it, we are here for you.

6/11/2006 6:08 AM  
Blogger ObilonKenobi said...

I think that you should talk to your son about hope. This is a hard lesson for him at too young an age. You mentioned he's still in Nursery School. Although you definately should be frank about the illness, at his age you will do a great service to him to speak about hope. Especially since you mentioned in the past that you had survived a lif threatening event.

The post was hard to read because of the young boy's illness but the fact that you ended on a positive note was touching.

6/11/2006 10:11 PM  
Blogger Dirk the Feeble said...

The day after the "hope talk" you should tell your kid about brain-eating zombies. Another very valuable lesson.

6/12/2006 10:04 AM  
Blogger FantasticAlice said...

Make a link to Make a Wish foundation... a good childhood friend of mine had Lukeimia... had two bone marrow transplants... after his trip to Disney World, he had a "new" lease on life and he beat it. He has now been cancer free for 16 years.

6/12/2006 1:21 PM  
Blogger Will said...

I can imagine that this is not an easy thing for your son to have to encounter at such a young age. I commend you for being there and helping him be strong.

6/13/2006 12:40 PM  
Blogger FantasticAlice said...

Nothing new today? Thought you would find this interesting:

http://www.stltoday.com/stltoday/neighborhoods/stories.nsf/news/story/33F3B44B963069108625718800752FF1?OpenDocument

6/13/2006 3:28 PM  
Blogger FantasticAlice said...

Nothing new today? Thought you would find this interesting:

www.stltoday.com/stltoday/neighborhoods/stories.nsf/news/story/
33F3B44B963069108625718800752FF1?OpenDocument

6/13/2006 3:28 PM  
Blogger Kay said...

Hope that the shifts are going smoothly - I can't imagine that you've got a lack of people ringing you up to help.

Keep up the good work, plus best wishes to Logan and his family.

6/13/2006 8:12 PM  
Blogger Keshi said...

not updating?

Keshi.

6/13/2006 10:39 PM  
Blogger DaBich said...

keshi, i was thinking the same...
hope all is ok with Phoenix

6/14/2006 6:36 AM  
Blogger BrianAlt said...

Everything ok in Phoenix land?

6/14/2006 8:23 AM  
Blogger Jon Cox said...

O wow, what a story!
I wish your sons friend the very BEST!

6/14/2006 12:37 PM  
Blogger Eve said...

where the hell r u?

6/14/2006 3:51 PM  
Blogger Phats said...

Everything ok phoenix you haven't written in awhile?

6/14/2006 3:57 PM  
Blogger Carae said...

Sounds like you have your hands full with that little guy. It's great that you take the time to explain to him what's going on, instead of making something up to "spare" him.

My prayers are with Logan and his family. Cancer seems to be running rampant in the lives of people around me lately.

6/14/2006 9:06 PM  
Blogger Keshi said...

Dabich yeah, I havent seen Phoenix going this long w.o. posting...hope he's ok.

Keshi.

6/15/2006 1:33 AM  
Anonymous Tasa said...

thats awful... being at sick kids, I heard many stories like this one. One couple, while my son was in surgery, also had their boy in surgery - for his liver I think. Then the doctor came out to tell them that their son also needed new lungs, but even with new lungs he would only have 5 years to live.
there was a baby in the NICU with my baby, named Hope, that was slowly dying because her organs were failing =(
Hopefully Logan recovers from leukemia, and your son and him get to spend many years together as friends ^_^

6/18/2006 3:53 PM  

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