My three year old son has cancer.

My sweet, 55 pound, 3 1/2 year old son with big round blue eyes and precious smile has a tumor growing in his leg that wants to kill him.

Two weeks ago he felt fine. We felt fine. And yesterday we inflicted the first serious wound in a series of events designed to save his life.

How bizarre is that? How do you go from look at the stresses in your life as finances and getting to soccer games and the next day you're crying on the shoulders of the few patients you know honestly care about you?

How do you go from wondering how you'll pay for college to buying a video camera so you can preserve every precious moment of the life you have come to treasure?

How do you tell an older sibling that your family is entering a time of unforeseen difficulty and challenges?

I don't know. Except I think there are a lot of tears involved. And a lot of hugs and prayers. At least that's the evidence I have so far.

I have faith that my life and the lives of my family are not a series of unpredictable and chaotic events. I believe that God holds us is his hand. But this is still really hard.

So, the final diagnosis comes from the oncologist. Rhabdomyosarcoma. It isn't a shock. It's what the radiologist first mentioned 2 weeks ago, looking at the MRI. But apparently the oncologist didn't want to say it until he was certain.

The rapid-fire changes in our lives continue. Next week we take our son to the children's hospital, have a central line placed, and have bone marrow biopsies to make sure there is no spread. Then, possibly even that same night, we start chemo.

My son has a significant language delay. Meaning he speaks like a 2 year-old and understands not quite well enough for his age. So, none of this can be adequately explained to him. And he can really ask no questions. It's horrible.

I have a confession.

I am a total pessimist when it comes to cancer. My apologies to those who have family members who have survived cancer, and who are fighting it right now, but I have often said in my head, if not aloud:

"If I ever found out I had cancer, I would just try to go live my life the best I could and not try to kill myself with all the poisonous therapies."

I have heard of and watched people "battling" cancer and seen them die anyway, battered and beaten. In med school, I watched young couples, taking the wife home for hospice, make a turn into our hospital where an oncologist offered them "a complete turn-around" with just the right therapy. In my opinion, a half lie.

I have considered chemotherapy the modern day version of blood-letting. Something that we will look back at and say, "Why did we ever do that?"

I have put my nose up in irritation at everyone raising money for cancer research at every office and store around town.

I am so sorry.

Not that I've never given money, or been rude to people undergoing treatment, but I know my heart hasn't TRULY been in it. And, I know I MUST do everything at this moment to help my son. And, I know I'm going to be one of those people who ignores the "33% death rate," in favor of the "67% cure rate".

At least for now.

Sethina added a picture, if you want to picture my son while you're praying for him...

Tomorrow is the big "first day." We are nervous, scared, and wondering what will happen, how things will go.

My son is getting over his cold, which I hope the surgeons won't notice.

It's hard to watch my husband struggle with this illness. Both my husband and I have lost a parent years ago, and we're not unacquainted with death. But, the pain of those losses is so distant for us, and so they're not that severe in our minds. The potential of losing a child, however, of not watching him jump on the bed or suck on his thumb or tease his sister seems incredibly difficult.

Thanks for your prayers and encouragement. We are forever reminded to take this all one day at a time.

Everything went fine yesterday. The bone marrow is negative so far. The central line went in without a hitch, and now we are waiting for the chemo to start.

So much information pouring at us from every direction, it's overwhelming. We're exhausted from long, emotional days, and just imagining ourselves going through this every week for the next ... year?

I just want to go home and crawl under my quilt, cuddle with my DH and kids and sleep.

We returned home Friday afternoon and were happy to be in our own place and sleep (a long time) in our own beds Friday night. Shortly after our return home, a visiting nurse came to instruct us how to give Per's daily Neupogen shot, which is supposed to stimulate infection fighting white blood cells that could be blocked by the chemo. At $220 a one or two-dose vial, we are glad for our health insurance! DH did a great job of giving the first injection.

Our daily routine now consists of: Giving Bactrim twice a day on weekends, Apply EMLA to place where shot will be given, wait one houre, give Neupogen shot. Any intermittent nausea meds, up to 8 times a day.

Climbing in to bed last night, DH and I continued to talk about how weird it feels, taking a kid who acts and looks normal, but has a bump on his leg, and poisoning him in this way. Any sickness that he will have right now will be from our treatment, from us. He's going to lose his hair, throw up, be poked and hospitalized and possibly infertile from treatments we are giving a healthy looking kid. So Strange. In a way, I'm glad that he wasn't feeling sick before all of this started, because it gives me more hope for how he'll feel at the end of the treatment, but it still feels really odd.

We will probably have the final bone-marrow results early next week, but Per's oncologist didn't seem to think they should be very different from the initial results.

We will be going for weekly chemo (every third week an overnight treatment) for the next 12 weeks. After that we will have radiation and/or surgery for direct treatment of the tumor, and then 30 more weeks of chemo. That schedule will be delayed if Per has low "blood counts" and/or get sick in the interim. It will also be adjusted if the tumor doesn't respond and keeps growing.

We are learning a lot about living with a cancer patient. For instance, last night Per seemed perfectly fine, but didn't eat any dinner. He had eaten a huge lunch, so that didn't seem too unusual. We gave him his nausea meds before bed, but this morning were debating whether he needed more. He was playful this morning, and after downing a few bites of breakfast, he began throwing up everything he had ingested, and when I went up to get him a change of clothes, I realized he had vomited in bed last night. So, we are learning that Kid Who Doesn't Want To Eat = More Nausea Medication.

We are wrestling with what restrictions to put on Per's activity, whether we should allow him to go to school and/or church. At the age of 3, any restrictions to Per's activity will also affect our activities, and 42+ weeks of treatment is a long time to keep a kid at home.

Prayer requests:
1) for wisdom about restricting Per's activities. Any fever, even from a cold, will necessitate a hospital visit, and possibly a short stay, so it would be a big deal.
2) That the chemo would be effective against Per's cancer
3) For our family as we adjust to all that is happening, that we could pay attention to DD in the way we need to, and that we could work together as a cohesive unit.

Today, DH took Per to see the radiation oncologist. He's the guy who's going to irradiate my son after the surgeon cuts out part of his leg, 12 weeks from now. (Sorry, feeling very dismal)

He tells us that after this, my son's leg may not grow normally. He may have muscle and nerve problems in his leg, and ongoing weakness. This is on top of the fact that he's probably going to be infertile from his chemo.

Per is really tall for his age. And he has the most beautiful thighs (people in my family are into thighs, what can I say?). He has big round eyes that are the same blue as his dad's, and a beautiful smile. I love him.

Why does he have to go through all of this? I can't begin to understand right now. I don't know if I ever will.

And I'm frightened by the possibility that we could do 42 weeks of chemo, make him really sick, a month straight of radiation treatments, make him sicker, and still lose him.

This is a hard day.

A couple of positive things have happened.

We found out the final bone marrow from last week was negative. That's awesome.

Also, I've become aware of how bad things could be, because I got on an email list of other families with the same cancer.

Good things:
1) No evidence of spread, at all. many kids have multiple tumors before it's diagnosed, because it's so rare and unexpected.

2) Tumor is in a place far from any vital organs, as far as radiation is concerned. I don't have to worry that Per's face is going to grow lopsided because of it, or his brain will be damaged by the radiation or anything.

3) We don't have the most virulent kind of RMS

4) My son is tolerating the chemo really well right now. I've read lots of stories of kids that struggle through every chemo treatment, and one who had his dose reduced to 25% of the usual.

We are fortunate in our own way, even if life isn't perfect.

Tomorrow we go for our 3rd chemo treatment. Most likely we'll be down to Milwaukee and back in a day. So that's good.

Last night, I dragged my husband into reading a bunch of pages at "caringbridge.com" It's a website for people to keep their family and friends up to date about their illness. Anyway, you can't just search there, someone has to refer you to their website. But it's an amazing place to see people's stories. (I'll post the link if we ever have a page)

There are so many kids who have been fighting this kind of cancer since the day they were born, or just a few months old. I received an email about one teenager with recurrent disease, which means his chances of survival are very low. And so many loving parents, just struggling to keep their small child alive. Most of the kids with this kind of cancer are under 6 years old.

Actually, looking at their stories gave me such a compassion for their families, and also for the families of other kids with cancer out there. And such a thankfulness for the doctors and hospital/clinic staff who treat them. What a calling.

Well, I'm feeling really hip! I've made a page at CaringBridge about Per and our family.
Feel free to check it out.

Per\'s Web Page

Today is a very tough day. It's my day off, which usually means vegetating and relaxing, because my other day off is now a chemo day.

Overall, the chemo treatments are going very well. So that's awesome. However, Per is beginning to complain of more and more epigastric pain. It's not consistent, and doesn't seem to really distress him, but because he has terrible communication skills, it's impossible to get more out of him then pointing to his stomach and saying "hurt."

And, I think he's getting more anxious all the time, so even that could be part of the stomach issue. This morning he screamed like a crazy man when I tried to get him dressed, then hid behind a chair when his bus came. Frustrating, and makes me feel sad for him.

On the upside, we are about 1/8 of the way through our treatments. Yea! Per's tumor is so much smaller, and that is awesome. I can really pray now for a cure for him, because I believe it will happen. I just wish things would be simpler in the meantime.

Our chemo this week got postponed because ds's WBC counts are too low. This is discouraging, because his tumor has been shrinking and I have been feeling so hopeful about that.

So, my call schedule got rearranged (again) and we'll try again for next Friday.

It's just another reminder of how terribly toxic these medications are, and how they are cell-killers, not meant to be friendly to my son, but hopefully they will kill more cancer than good stuff.

Now we are about 1/4 of the way through this horrible chemotherapy treatment. Wow! I just realized that. We have one more overnight treatment before repeat scans and going to surgery.

My son really is oblivious to all that is going on. He doesn't mind his thrush and daily meds as much as an adult would, I'm sure. At dinner, he is always reminding us to pray for his "bump." You really can hardly feel it now.

My daughter is enjoying the perks of being a cancer sibling around Christmas time, with big fancy parties and presents being handed out by compassionate strangers on the oncology ward.

My husband and I are trying not to kill each other. Trying not to become a statistic. Trying to fight our way through to a stronger relationship, not a weaker one.

I'm trying to figure out how to peform all my roles as best I can: Wife, mother, doctor, friend, crazy person.

I think we're surviving. I'm glad to realize that we are probably 25% of the way to the end of this treatment. What's a teensy 32 more weeks!?
:boggled:

Merry Christmas!

For those who are interested, my son had his MRI repeated yesterday, and it showed an 88% reduction in the size of his cancer! It also showed that the tumor is not involving his sciatic nerve, so that is great.

We'll talk to the surgeon this Friday and then off to the OR next Tuesday.

God bless all of you. I cannot imagine ever going thru something like this. i hope , and pray your son recovers.

also, he is really cute,
mini

My son has his surgery, and the margins of the specimen were negative, yea! Last week we had our first modeling session for radiation, and our second is this wednesday. Then, this Thursday, we start the first of about 20 treatments, 5 days per week.

Once we're done with radiation, it will be back to weekly chemo until about August. So, that's terrific.

It took him a while to get started with walking again, but he's doing well now.

I found out last week my daughter is getting bullied at school by one of her "friends." So I got to focus on the other kid for a while!

It's been a little while since I have heard about your son. I saw that the surgery went well. How is he doing??