Death of a Superhero
Saturday, February 28, 2009
So as I sit here in our whirlwind of hope and fear, certain things randomly cross my mind. So I've decided to express them. In some ways I feel as if I get them out - they won't hang over my head and come back to slap me in the face. I guess this is how I'm choosing to "deal". So I'm just going to be honest and just share this batch of emotions that enhance my days like sweet......and sometimes pungent spice.
I'll start with the lovely list of the things I HATE:
I HATE that my kid has Leukemia. No matter how you phrase it, no matter what day it is, no matter how positive a person can be and no matter what sugar you coat it with.............it sucks.
I HATE thinking of my life without Hunter. So therefore I try not to. I've seriously allowed it to sink in once........but, it was so incredibly painful and deeply, deeply crushing......I couldn't stand it. It was another one of those times when I felt as if I was just going to collapse. Not sure how I would survive that one.
I HATE that we have to return to hospital living on Monday and live there for the next 30 days.
I HATE that I now have a Bone Marrow Transplant file amongst Hunter's baby files.
I HATE how the casual sayings "live in the moment", "live every moment as if it was your last", "enjoy the now" are now my truths.
I HATE those few times when my overwhelming amounts of sadness seem to take me over like hot lava.
I HATE how I now look at every bi-racial person that I pass on the streets as a possible bone marrow donor for Hunter. For whatever reason, I don't think it's that rude or odd to walk up to a complete stranger and ask them for their bone marrow???? Even Obama could be a perfect match....??
I HATE how we are constantly living out of boxes. Between living in the hospital for 8 months last year and then packing up and coming to Oregon and then living on the road for 3 months and then going BACK into the hospital. We've never really unpacked and most of our stuff is STILL in boxes.
I HATE that we are now germiphobes. Because of Hunter's condition, we now wash our hands CONSTANTLY. And when someone sneezes around us, it's as if they just hocked up a loogey and rubbed it in our hands. We get so offended. It's quite funny, but oh so true. When his immune system is low........a common cold could bring on a whole slew of things. No fun. I also now open as many doors as I can with my knuckles and carry my own pen so I never have to use the one at the grocery or the bank or the gas station or the post office. FYI - those pens carry an amazing amount of YUCK.
I HATE that there isn't a cure for Leukemia and that the doctors don't know why children get it in the first place. One doctor basically said that we were just unlucky. huh. One more thing that SUCKS.
I HATE how sometimes my heart truly feels broken.
I HATE how sometimes when I'm looking at Hunter........even if he's super happy.........I still want to cry.
I HATE how I was told on my birthday of this year that Hunter's cancer had come back. We were supposed to be at a delicious dinner that night........instead we were at a hospital sobbing. Happy Birthday.
I HATE feeling so helpless.
I HATE that my sons life dangles in front of me like a carrot.
I HATE how sometimes it seems as if my flow of tears is never going to end.
I HATE how we feel as if we are living in a time warp.
I HATE that even with a bone marrow transplant - there is no guarantee that the cancer won't return.
I HATE that I sometimes already feel like a glass of red wine by 8am..................thank god for MIMOSA'S!!
...............our life doesn't completely suck. We are extremely fortunate and aside from all of this - our lives are perfect. However, Hunter is a HUGE factor in that "perfect" equation.
So now for the things I LOVE:
I LOVE that my kid is alive and that he's one hell of a fighter.
I LOVE that Hunter's in REMISSION
I LOVE that the tears do eventually end..................like my lovely cousin once said, "no one cries forever".
I LOVE all of Hunter's supporters of the Hunter Cause on Facebook. He's only 2 and he's tripled the number of friends I have! He's got somewhere around 500 now.......what????
I LOVE how I can doctor up hospital scrambled eggs to taste like something very delicious. Believe me...........it's really, very hard. Their eggs taste like crap.
I LOVE how I can walk to the hospital cafeteria in my pj's and no one seems to care......or even notice.
I LOVE that Lightning McQueen is Hunter's idol. He's pretty cool.......ka chow!
I LOVE how Hunter's first words were please, and cheese and beach. After his 8 months in the hospital last year.......everyone thought his first words were going to be........what the f**k ????
I LOVE all of the people that are participating in the bone marrow donor drive. My dear friend Jen who put it together and everyone who contributed and helped organize it and everyone that's being tested - WoW. Truly........thank you....from the very, very bottom of my heart.
I LOVE our family and friends and all of the people that have come to our rescue. We would have lost it quite a while back if we didn't have such strong and positive reinforcement from EVERYONE.
I LOVE what Hunter has brought into our lives.
I LOVE how the parents of children with cancer receive a handbook. It defines all of the stages of emotions that we go through. So when I feel like punching the shit out of a wall..........I can easily just go to my little 'ole handbook and have it tell me that this is normal. sweet. almost as satisfying..............but not really.
I LOVE Hunter's smile and his sweet little giggle. They fill me with such warmth and joy.
I LOVE that there is a chance that his cancer will be completely cured after the bone marrow transplant. We'll ride the wave of positive thinking.........always.
I LOVE my husband. He's takes everything in stride...........and he's also pretty sexy. oh yeah......and he rides the hell out of a motorcycle. KA CHOW!
Below is Zen tearin' it up on the beaches of Australia. He still rides wheelies for me.
Some pics of Hunter on his 6 month break last year - enjoying being cancer free. We kept him busy. Had lots to catch up on.
Lovin' on dad.
Hittin' Hollywood Blvd.
Met Frank...........wasn't too impressed.
Hunter in San Fran. A little concerned that he could be coyote bait.
Heading towards the Bay.
Back at the warm & cozy hotel.
Sweet sunsets with Dad and his little buddy Sebastian.
Chillin' out in Oregon.
Appreciating fine art in Hood River.
Along the oceanside in California.
Kickin' it in Australia.
Having some fun with dad driving through all the fresh water wash-outs along the ocean. I'll have to admit...........that was super fun.
Camp spot on the beach.
Thursday, February 26, 2009
We received the phone call this morning and apparently he has less than 3% of Leukemic Blast Cells in his blood. When he first relapsed in January - his blood had 46% of Leukemic Blast Cells - so that's 43% less!!!!!!!! YAY!!!!! The chemo is working.
Now the next step is a second round of chemo, which we start on Monday, and then we condition his body for the Bone Marrow Transplant. As of now, his transplant is scheduled for the second week in April. That's if and when everything pans out with a Bone Marrow donor.
Below is Hunter going in for his Bone Marrow Aspirate last Friday. He gets his routine blood pressure taken before every procedure.
Then they draw blood. This was to test his counts to make sure that his body is strong enough to handle the Bone Marrow procedure.
They use the sleepy juice for this one and not the happy juice.......so he's out like a light in seconds. Doesn't seem to be too happy about it. In fact, he looks quite pissed.
The forever hated "laydown".
Our little sleeping prince.
Passed out in dad's arms after his long day. Safe and sound.
Everyone's love and support has truly been amazing. Thank you so much for sending all of the smiles and sweet blessings and prayers our way. Thousands of people will sleep tight tonight.
Saturday, February 21, 2009
Sweet! We loooooove this part. Hunter sports a mohawk so well, it's something we almost did when his hair wasn't falling out! Not sure how long it's going to last - it's pretty amazing how fast he looses it!
Hunter actually has 2 amazing hair sponsors that I'd love to mention.
Zen's dear friend Mateo who cuts and styles hair at the Argyle Salon & Spa on Sunset Blvd. in West Hollywood. He gave Hunter his first mohawk last year.
Mateo and a few other stylists that work at the salon also cut hair for the day to raise money for Hunter. Then an amazing charity by the name of Kids Courage matched what Mateo had raised. It was such a great event and was a HUGE success! Thanks soooooooo much for that Mateo - we love you!!!!
Hunter getting his mohawk last year by Mateo.
Mateo creating a work of art the day he raised money for Hunter. Love the ZEN TODD t-shirt he's wearing!
Hunter's other fabulous sponsor is Chaz Dean, a well known celebrity hair stylist, who is also pretty phenomenal. For one, he created the WEN products and they rock! He donated a ton of product for Hunter, and his Tea Tree cleansing conditioning that we use on him is fantastic. I'll have to say I'm also a fan of the Lavendar...it's yummy. Thanks Chaz!! So glad you are in Hunter's life!
Hanging out with Chaz at his salon which is absolutely lovely.
Well since we are in Portland now and not in Hollywood, Zen was the stylist, and I'll have to say he did a fantastic job.
So some other GREAT news, the hospital also sent us home on Wednesday! We get a mental break and get to go home and live a normal life for one week. Hunter went in on Friday for the doctors to retrieve a sample of his bone marrow to see if there is any trace of Leukemia. They will have test results by Monday or Tuesday and that is when we will know if Hunter is in remission.
If Hunter is in remission, then we get to let his body recover for another 7 days and then we'll get admitted into the hospital for another 30 days while Hunter gets bashed with a second round of chemo. If Hunter is not in remission, then we'll go in sooner for the chemo to get a jump on things.
Hunter at home! He is particularly fond of the outdoors.
He loooooves playing the harmonica. He's quite good, actually.
Thursday, February 12, 2009
The closer we get to transplant time, the more information is released and the more terrified we become. I've never been so scared in my life. To look at Hunter and think of the hard truths that the doctors have divulged is stabbing me in the heart and every now and then there's a slight twist. I feel as if I'd completely die if anything ever, ever went dreadfully wrong. My mind chooses to not go to those dark places and I'll have to say, I don't think I'd be able to survive this if it did. It's absolutely horrifying and doesn't seem bearable by any human standards. Often times when I'm laying next to him during the night....... instead of sleeping, I just stay awake and stare for hours. I rub his tiny face, I listen to him breathe, I cuddle his little toes and I whisper sweet little things into his ears. I'm sure he hears me. I continue to tell myself that he's going to be one of the kids that survives and I truly believe that - but every now and then something scary sneaks in and I have to beat it down with steel fists and beg for it to leave. I'm on my hands and knees.
So we've now been here for 3 weeks and I can't say I've been counting the days yet. Still seems like nothing compared to the 8 months we lived in the hospital last year. I guess I just don't really seem to be phased by living in a hospital anymore. I do get sad however, thinking about all the time Hunter has lived in the hospital.......not fair.......but we're doing the best we can to make it as normal for him as possible. He's been in a box with one window for 21 days and is going to continue to live in a bubble for the next 6-8 months.
So everyone wants to know how we spend our days and whether or not we've gone stir crazy or have cabin fever. I've attached a few photos so you can see how we are killin' time.
Below is what Zen and I usually look like when we wake up in the morning. Picture that with morning breath and doctors hanging over our bed, first thing in the a.m., wondering how things are going. They definitely don't see us at our best! uuuuuuugly.
This is what we get from Hunter when we tell him it's time to take his medicine. He looks cute now, but by the time we lay him down and show him the syringe...........he's not so jolly.
I gave him his first hospital haircut. So below is a picture pre-fro and then after, where we have slick Rick. Once again...........he drives the nurses wild......hee hee.
He hangs out in bed alot watching movies. Instead of sleeping with Teddy Bears.......Hunter sleeps with DVD's. In fact he's the only 2 year old that I know of that fully knows how to operate a DVD player. Sweet.
We read lots of books. Lightning McQueen is his favorite.
We eat lots of cookies. Very fattening and definitely contributed to putting some meat back on Hunter's bones!
In addition to eating cookies, I get to eat lots of spoons. For some reason, Hunter likes to see how many spoons he can cram into mom's mouth. I'm fully surprised at how big my mouth actually is - impressive.
Hunter takes lots of pics of himself. Photographer in training. He's obviously very good.
He stomps around the room in his Lightning McQueen crocs.
He loves the windowsill, just like back in LA. So sometimes he plays........sometimes he just hangs out.....
And sometimes he just looks out the window.
It's really pretty to look out the window when there's been a fresh snowfall. We've lucked out and have had 3 of those so far! This is the view from our room window.
This is also a really fun game that Hunter seems to really enjoy. He sticks as many stickers on my face that could possibly fit and then he likes to rip them off. Hmmm.....the things I do for this kid......
This is one of the last interesting pics. Does anyone know what that is?????
We eat lots of pistachio's.........needless to say - we've already learned our lesson and we now take a peak before we pop each one into our mouths!
Oh yeah.......and we also take lots of naps. Dad and Hunter crashed out. This is when I sneak in lots of kisses.