Death of a Superhero

A Family's Story about Courage, Bravery and the Defining Moments of LOVE

Our sweet, lil' baby love lost his battle to AML Leukemia on March 8, 2010. We fought long, hard and very aggressively for 2.5 years, only to have his cancer come back for the fourth time to finally take his life. He was only 3 years old.

This entire blog is about Hunter's amazing journey. It's about his life and his love......his determination and his courage.......his absolutely, brilliant personality, and the affect he's had on people all over the world.

He's left an unimaginable footprint on this earth and has changed the lives of thousands of individuals. People who didn't realize how precious life was, now live it with extreme gratefulness. People who took every minute they get to spend with their children for granted, now savor every last second. And people who weren't quite sure what love is all about, now love deeper, love stronger and love with every ounce of their soul.

People all around the world have shared their love, their well wishes, their prayers and their inspiration, and we could have NEVER achieved as much as we did without them. We are humbled by their generosity & their true friendships & are forever grateful for every last person that has come into our lives through our experience with Hunter. He was our precious baby love who we loved and cherished with all our hearts and we are forever crushed and terribly, broken-hearted.

Dance in the clouds baby cakes. Mom & dad are watching proudly & you will remain so very close to our hearts for all of eternity.

Wednesday, August 26, 2009

Hunter's Start to Recovery

(Day 72 Post Transplant)

So here we are.......


Life has been very different over the last 30 days. Zen and I went through all sorts of stuff this last month and I think it's been a little bit of a reality-brick in the face. I will throw in, real quick, right now that today and yesterday were great I think we are officially out of the deep funk - but whooooooooosh......we dealt with a somewhat harsh bit of reality coming home from the hospital after being there for the last 8 months and having to adjust to life again - with our life situation being far from normal.

Hunter is our main focus. As soon as he wakes up, he's greeted with smiles and lots of lovin' and a thorough visual check-up, usually from both mom and dad, to see how he's feeling. He's usually connected still to his IV fluids that we are running at home, but it's easily transported all over the house. We start off in the kitchen with a choice of breakfast items and will pretty much make whatever it is that he'll say "yes" too. It's such a treat to see him eating again.......we'll cook anything and everything just to see him cram something into his tiny little pie hole. He is still experiencing some graft vs. host in his gut and upper stomach, so his diet choices are somewhat limited - but he's eating a pretty good variety of some super yummy stuff. His taste buds seem to be quite refined. And before, during and after he's eating, dad and I are also busy plunging 10 morning meds into his "nose hose". After that, we pretty much try to go on with the rest of our day with meds again at 4pm and then again at 10pm.

He is no longer puking and spewing from his bottom, and that ALONE is a huge relief. That was not going to well. When we were originally released from the hospital after our 104 day stay, Hunter was not doing that great. He was stable, but not himself, very low energy and not wanting to eat or drink or play. All he did was lay in bed and sleep. He barely moved and it was super depressing. We had clinic twice that week and he was checking out somewhat "ok" on that Monday and by that Friday - they checked us in. Hunter's condition had worsened and his fluids, foods and meds were not getting absorbed by his body because of his graft vs. host. So we had to immediately check back into the hospital and switch Hunter back to IV meds, as opposed to oral meds, get him on a bunch of fluids and give his gut a rest.

Definitely felt as if we were in the twilight zone. Felt a little dazed. Felt very saddened by Hunter's condition. Frustrated to be back in the hospital, bummed that we lost the pregnancy, and yadda, yadda, just plain sucked.

Hunter laying still and not moving for about 7 days. So sad and so worried. We were glad to be home at the time.............but not really. Can't say it was that enjoyable.

After about 9 days of hospital stay - Hunter was swinging back around and feeling much, much better. Hence......Zen and I are swinging around and feeling much, much better. His gut has improved and he has started to act a little more normal again and is wanting to start participating in some other activities.

We are now back home AGAIN and we've been here for about 10 days. We go to the hospital for clinic about 2-3 times a week and this week we are also starting physical therapy. They do a blood test in clinic every time to check his blood counts as well as other levels of meds in his system, and then we discuss his progress and make any appropriate changes to his daily regimen.

He's not really walking at all and he actually just crawled for the first time in a month on Monday. He crawled for about 10 minutes and then didn't crawl again until today for about another 10 minutes. His poor little leg muscles have just deteriorated.......we've got lots of rebuilding to do.

He is verbalizing a lot more so it's been super nice seeing his little personality come out. We are just so in love with him and sincerely can't ever imagine a life without him. He makes us smile so big every single day and we are just absolutely tickled to wake up with him every single morning. We are hoping and begging and wishing upon every star that we'll be able to keep him for the rest of our lives.

Celebrating Hunter's "clean" marrow in our Iron Hunter TShirts. That was another great day. His bone marrow results came back 100% clean of any cancer. Hunter was too busy to celebrate. He apparently had some more emails to get out on the iPhone.

Hunter full-on with no hair, no eyebrows and no eye lashes. He'd make a cool KoJack.

These are our famous hospital wagon rides. Sometimes Hunter is connected to his IV pole, but still insists on going out - so dad figured out a way to rig the wagon to the pole and.......around......and around we went.

This particular day, Hunter wanted to wear his Lightning McQueen baseball hat as well as his Lightning McQueen helmet. He obviously thinks he looks pretty cool.

Another wagon ride at home. This kid is all about the wagon.

Hunter shedding his snake layer. This was the graft vs. host on his skin all over his entire body. Wow. What a process.

Starting to feel a little better..........and look a little better. We even got a smile one day. Geez.......poor little buddy.

Hunter sporting this season's "Nose Hose". He wears it well.

Me and Bean at his last check-up.

Hunter Crawling!!!!!

This is a poorly lathered-up-with-sunscreen Hunter. hee hee. That stuff was soooooo potent and didn't come off. Seriously. Because of his cancer, he is now no longer a sun baby. His skin should pretty much not see the sun for the rest of his life due to it's extreme sensitivity from the radiation and the chemo. But, if he does get exposed to the sun, he should be in SPF 1000.......pretty thick stuff and we have to buy it from Mars.

The view from our back amazing place to heal Hunter........and ourselves.

Monday, August 3, 2009

Dad is back

Hi guys,

It's dad and I've been away from the blog for a very long time. It's about time I say thank you.

First, of all let me say thank you to Lenore. What a woman. I love her dearly and I'm always impressed by her ability to communicate our journey. As devastating as this disease is - it hasn't attacked our relationship. We continue to draw strength from each other - day and night. We both acknowledge the power of positive thoughts and even when things are hardly positive we keep pulling each other out of the mental blackness that surrounds us. I couldn't do this without you - thank you my love.

I also want to thank the many people that have helped us over the past two years. This is the journey of a life time and not one to go alone. Thank you for all the moral support. Thank you to everyone that have donated money or time. We would be in a very different space if not for you. Every single last person. Thank you for buying a t-shirt or a chapstick. Thank you for donating gifts for our fundraisers. Thank you to all the people that we have never met but have heard our story and then contributed to our lives in some way. The kindness and compassion never ceases to amaze me. I had no idea people could be so compassionate. I am humbled by you.

Extra special thanks to the Kobbe's for being the kindest and most generous people I have ever met. Now that we have been home for 4 or 5 days we have had the pleasure of waking up and going to bed - to the most beautiful healing view of Oregon's wine country. It's one in a million and so are you both. Thank you - thank you- thank you:-)

As I mentioned before we are home. After 104 days straight at the hospital they released us late last week. Out of the past 7 months we have been home about a total of 3 weeks. So going back to the hospital almost every day for check ups is a small price to pay for a little freedom. Hunter is stable with no fevers but his energy is low and he seems to be without his usually strong life force. It has us deeply concerned. He lays in bed all day and still isn't eating. We feed him by NG Tube ( I call it the nose hose) and we give him a concoction of liquid drugs thru the hose three times a day. I think we are administering somewhere between 9-12 life saving drugs a total of 20-30 times per day. It's a full time job. Then we have to get food and water into him - again thru the hose. Too much fluids at one time cause him to vomit so we are constantly balancing between too much and not enough. It's rough and somewhat discouraging to watch him so low. However, we have to be thankful that the fevers are gone and especially that his bone marrow came back free from cancer. It was only a week or two ago when we were thinking the worst was happening and the terror of losing Hunter crept into our minds and destroyed us until his marrow results came back free of cancer. That was a huge relief - when we got the wonderful news - Lenore and I held each other and sobbed for 30 minutes absolutely overcome with joy. What a ride. LOL.