Baldies' Blog began originally in the UK by a 26 year old journalist with a blood cancer on a mission to inform the world about bone marrow donation.

He has since died, and I took on the cause of making cancer care more transparent for everybody.

Cancer is a disease that will touch everybody through diagnosis or affiliation: 1 in 2 men will be diagnosed and 1 in 3 woman will hear those words, "You Have Cancer."

I invite you to read how I feel along my journey and
how I am continuing to live a full life alongside my Hodgkin's lymphoma, with me controlling my cancer, not my cancer controlling me.

I hope that "Baldies' Blog" will prepare you to handle whatever life sends you, but especially if it's the message, "You Have Cancer."

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Tuesday, March 2, 2010

BEst Friends

In first grade best friends are serious, or so I hear. 
I wouldn't know. 
I have the unique fortune of a twin sister. I had a built in best friend. 
But from the way X labels his "best friend" I know it's serious.
His best friend is the one boy that didn't laugh at him on the first day of school when he squirted himself with water from the fountain. His best friend didn't say anything when X screwed up in art and everybody else picked on him. 
That's what best friends are. They're the ones always on your side. 
This year, that bf is Andy.
Andy and x had their first playdate this summer after we ran into him with his mom in the grocery store. His mom and I agreed, after weeks of summer vacation, our kids were bonkers,  they kids needed a play date, pronto.
Since then it's been growing together, talking on the phone, "sharing" a girlfriend, more playdates, even an almost sleep over last friday that was canceled due to our dogsitting and Andy's dog fear.
Andy is scared of everything. A perfect match for X, who can be fearless to the point of careless. Andy could be X's yin to his yang. They evened each other out.
When A's mom called sunday, I thought it was for a playdate. 
"Andy's sick." She said. I was confused, "okay, so no playdate?" I thought. "Remember, how he hurt his leg..." She said and paused. 
I did. He'd been complaining of leg pain but hadn't injured it.
 I was confused, "so.... Is he going to be in school tomorrow?" I asked slowly, cautiously still wondering what the hell was going on.
 "He's not going to school anymore this year." she said, barely audibly.
 "WHAT?!" I thought, now I'm really confused. K, Andy's mom, is Laotian. I thought, maybe, the message was just getting lost in translation.
"Andy has leukemia." she finally choked out.
 Slam. And the walls came tumbling down. Crushed doesn't describe it. My son's bf friend has cancer. How could this happen? Of all the kids? of all the diseases? I wanted to burst into tears. 
I don't even know what I said to k but I have never wanted to reach out and fix something so badly. I can't imagine having a sick child.
I paused. I stuttered. Shocked. I was speechless.
Then other thoughts crept in like how am I going to tell x? Should we rush to see A? Do I pack up all my ed materials and take them over to her now? 
"He's in the hospital. We're getting tested this week." K Said. "He needs a bone marrow transplant." 
Shocked, still. Dammit dammit dammit.
"When did you find out?" I asked. I had so many questions and so many thoughts, and so many feelings all at once. 
I've never been on this side of the receiving news. I've never been this close to the devastation of a child being diagnosed with cancer. I didn't know what to say. I didn't know how to respond. I felt uncomfortable. ME, who has dealt with cancer issues for years. I couldn't fathom an appropriate reaction. All I wanted to do was cry and cry and cry.

When we hung up, I couldn't stop thinking of k. X was at a playdate. I thought I would wait until he came home, tell him, and call K back.
I called K before he came home. She stated Andy may need to go to boston for treatment but for now he is at Chad.
We now know Andy has AML (acute myeloid Leukemia) that is not very common in children. It accounts for only 15% of all childhood cancers. He will need a bone marrow transplant as treatment. His family, his two parents and younger brother, are being tested as possible matches.
Andy has a disadvantage in finding a donor. He is laotian or asian, and bone marrow matches are ethnicity based.
When I told X, he reacted the same way I did, "are you serious?" He asked. 
Exactly what I thought. This has to be a joke. A sick joke. 
"No." I shook my head and burst into tears, cursing myself for being a bad mom. I wasn't supposed to cry. 
X immediately asked to go back to his friends house. He wanted away from cancer. He wanted to escape and I don't blame him.
I started to tell him he needed to call Andy and be a friend. He raged. I could see the anger from the news starting to well up.
I tried to force him to call Andy. It was what was best for Andy. X lost it. Screaming and yelling.
I had taken the wrong approach. I needed to do what was best for X. I switched tactics quick.
 I started to treat him like I do when he's sick. I babied him with spaghetti o's and juice and then tried to talk about Andy again.
X again threw a screaming fit with tears in his eyes. Talking is not a 6 year old boy's way of communicating devastation. Instead, He tackled the dog. He needed his anger out, but certainly not by displacing it on his other best friend.
 I opted for a pillow fight, and once he was smiling in full swing gave him permission to say whatever he wanted safely, including swear.
 I started to show him how it was done, "dammit. Dammit dammit. This isn't fair." I hit him with the pillow. He started "everybody gets cancer" WHACK. WHACK WHACK WHACK. 
You get the idea. I let him really get me until he collapsed on the bed exhausted. 
After that we went upstairs to find one of his favorite toys. He wanted to take a bath and have his toys battle.
 This is exactly what I would do with x when he was 3 and had no words to cope. We would role play with toys in the bathtub, usually with a family of whales and dolphins. The big strong daddy whale and the son would always rescue and care for mom until she was better. I don't know what he did this time. He is almost seven and wanted his privacy, but at least I know he's using what he can to cope. 
He has had more loss in his 6 years than many have had in their lifetime. I trust this all happens for a reason. Keep a in your prayers. 


brynn said...

oh my gosh hil! tell xander i am thinking of him. tell andy and his family we are too.

Anonymous said...

plain and simple. life just can really suck sometimes. my prayers are with you all as well as Andy and his family. <3

... said...

God Bless all of you. We will keep you in our prayers.

heather said...

i'm so sorry. i will pass this along and encourage anyone and everyone to get on the donor list.

lanabanana said...

Oh, gosh...what can one say to that except I am SO sorry! Sorry for you, sorry for Xander and sorry for Andy and his family. Why bad things happen to good people.....because sometimes life just totally SUCKS and sh_t happens. Ugh. My thoughts are with you all.