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 1/2 years, only to have his cancer come back for the fourth time to finally take his life. He was only 3 1/2 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.
Thursday, May 28, 2009
The Doc just came in and informed us that there isn't a single trace of Leukemia in Hunter's body!!!!!!!!
Fuuuuuuuuuuuuuuuuuu*****k YEAH!!!!!! (excuse my language)
We are still not out of the woods, but at least we've been given the chance to now enter the forest. And I have NO DOUBT that once inside, our little man is going to continue to beat this beast. Especially with all of the stealthy warriors that are standing behind him & with him, loving him, encouraging him and leading him on his path to victory.
We cannot thank you all enough. The love and support that has flooded our airways over this last week has been amazingly overwhelming and you all have gracefully lifted our spirits and relighted our flames. I am being completely honest when I say that we could NOT have done this without you. You have saved us....again....and you carried our little love......celebrating his life and cheering him on louder than a stampede of wild animals. The only thing that echoed through our hospital walls was to FIGHT, FIGHT, FIGHT and we are forever grateful.
As of now, we'll start the conditioning for the Bone Marrow Transplant next Friday. It consists of 3 days of very intense chemo, then 4 days of radiation, then another 2 days of chemo..........a day of rest........and then Transplant. We are going with a Cord Blood unit that is a 4/6 match. We've been told that most bi-racial children go to Transplant with a 4/6 match and it's definitely considered a very good option. We'll be staying here at Doernbechers in Portland instead of going back to California and we'll be in the hospital for the next 45-60 days straight. We've decided that continuation of care and keeping Hunter stable is most important.
So the race is on. We have to get Hunter to Transplant before the Leukemia comes back again...............and believe me........we are in a full on SPRINT.....cheetah style.
Tuesday, May 26, 2009
So Hunter had a Bone Marrow Aspirate, a Bone Marrow Biopsy and a Spinal Tap earlier today. Wheeeeeew.........that's quite a big breakfast. Almost makes me want to throw up. But Hunter didn't..............so I guess I won't.
And so.....this is it.....................our last hope. If Hunter's marrow comes back with less than 20% Leukemia, we can move forward with the transplant, even with the odds not in our favor, (according to the stats......which we've now started to ignore). If his marrow comes back with MORE THAN 20% Leukemia.......then the doctors have stated that it wouldn't be ethical or in Hunter's best interest to go through with the transplant because the chances of it being successful and him surviving are slim to none. And the suffering would be unbearable.
We are super stressed, very nervous, kinda nauseous, and really, really, really want to see the results........but then again, NOT really.
The good news is that his spirits are super high and he was laughing and giggling and playing last night in his bed for the first time in almost 3 weeks. He's was down for the count for the last 18 days with a case of Typhlitis and also Myositis.....on top of getting slammed with super powerful chemo. But he is once again............coming out of the dark.
We've put a hold on the herbs for right now until we see what is going on in his body. He's still on multiple antibiotics and antifungals and continues to get food and fluid through his IV. Although he did finally eat about 10 pieces of Bananna Flakes today.......YAY!! Munch down little man! He's been getting transfused with Platelets and Red Blood Cells on a daily basis for the last 13 days, but he is off his oxygen which is FANTASTIC and we haven't had to hit his morphine button as regularly as we did before. We LOOOOOOVE THAT! Although dad and I might take a swig or two if we get the chance. I wouldn't mind being a little numb right now.
We've opted to only think of the best possible outcome. Whenever we think of anything else we fall apart. It's so incredibly painful and maddening when we truly face what is happening.
We actually attempted to go out for a meal two nights ago just to get out of the hospital and we hadn't even been there for 10 minutes before we started crying. We are constantly taking deep breaths and pushing demons out of our heads and out of our hearts. I've never been so challenged before in my life. Zen thought the hospital should have a button for parents to wear who have a child dealing with cancer so that people know not to ask us any personal questions...............it just opens up the floodgates. By now, we've pretty much broken down at the grocery, Costco........random restaurants .......the gas station, the post office, elevators..........you name it - we've cried there. And have no problem doing so. And even if we did...it wouldn't matter - because we no longer have any control when it hits us.
I've attached a link to the video of us getting ready for our procedures today. We walk down our hallway on the 10th floor of the hospital and go into a tiny, little room and they slowly put Hunter to sleep. And then there is a video after when they come get us and we pick up his little body and carry him back to our room. It's kinda sad..........but gives you an ideal of our life as it happens.
Putting Hunter to Sleep.
CLICK HERE FOR YOUTUBE VIDEO CLIP
The tear that flows down Hunter's face right before he falls asleep just wrecks my insides. There are no words to describe watching your child go through something like this. I find it so hard to believe that this is really happening sometimes. We're living a nightmare.
Getting Hunter after Procedure.
CLICK HERE FOR YOUTUBE VIDEO CLIP
This is a photo of Hunter's Myositis. His left thigh is extremely swollen and looks like a watermelon compared to his right thigh. Although his right thigh now currently has some swelling in it as well. It's apparently pretty painful and definitely makes Hunter NOT want to have to go through any diaper changes. He doesn't even like to be moved for that matter.
Here is Hunter on our way to his MRI before the Myositis was diagnosed.
And here he is........once again........being put to sleep.
Welcome to our life.
Sunday, May 24, 2009
Thursday, May 21, 2009
For those that haven't seen this....................it will lift your spirits.
This was Hunter's countertop jam after his 2nd round of chemo, (we are now on the 4th round). Make sure you watch it full screen so that you can fully appreciate his fine foot work.
The magical wiggle beat is done with a salt shaker and a cardboard paper towel roll.
The Hunter Jam
Friday, May 8, 2009
Hunter's life is on the line.
We received devastating news last friday at 5pm. The unusual cell activity that was going on in Hunter's blood is in fact the Leukemia. It has moved in at a rapid pace and has a hold on our little boy and is not letting go. We've had to look this beast in the face every day for the last 19 months and it's now come down to yet another battle. And the winner of this one gets Hunter's life. We are fighting like raging monsters and I almost feel as if I'm going insane. The emotions that have traveled through my body these last 7 days are ones that I've never experienced in my entire life. It's maddening, it's horrific, it's soooo, soooo sad..............and it's killing my heart.
He hasn't eaten for almost 8 days, his lower left portion of his lung has filled with fluid. His face and entire body are swollen and puffy and he won't move or play with his toys or even smile. He's had a fever of 105 for almost 5 days.
He's on a constant drip of morphine, he is back on oxygen, he's constantly getting transfused with red blood cells and platelets and they've also got him on TPN to feed him through his IV.
So basically, after the 2nd round of chemo, Hunter's Bone Marrow had about 3% Leukemia. We tried the experimental chemo, Clofarabine, for the 3rd round hoping to get rid of all traces of disease before transplant. Well......................not only did it NOT get rid of the cancer, but Zen often sadly jokes and claims that the Clofarabine acted as a cancer fertilizer. Hunter's Bone Marrow is now more than 95% Leukemic and the disease has taken over his body.
We were actually given the option of going home and making Hunter's last few days, weeks, months as comfortable as possible. They send you off with some oral chemo's, some morphine and a nice swift kick in the ass.
Needless to say.....................................................we didn't take that option.
We CAN'T take that option.
We won't accept that option.
This last week has been unbearable. Zen and I are barely making it - but we are somehow finding the last bit of hope to use to smile in Hunter's face when he's looking to us for comfort.
We've opted to try one more round of chemo knowing that the damage of the chemo treatment - could take Hunter's life. He now needs to make it through this round and then make it through another intense round of chemo, radiation and then the actual transplant. For those that know the chemo lingo, this last round consisted of 7 inter-lapping days of chemo - 1 day of AraC aka Cytarabine, 4 days of High Dose AraC aka High Dose Cytarabine, 4 days of Mitoxantrone and a final day of Gemtuzumab. Very intense and can be extremely toxic and harmful to his organs. We've taken special precautions and have ordered additional tests to keep Hunter's organs on track.
We'll do another Marrow Aspirate after this next round and if there is any more than 25% Leukemia in his Marrow..............it's time for another "life discussion". Even as it stands now............if we are lucky enough to make it to transplant........Hunter's chances for survival are 10 percent, which makes the chances of him relapsing after transplant - 90 percent.
We've consulted with another father of a little boy with AML by the name of Jaymun and he's been a huge help as far as assisting us in prolonging Hunter's life. His son Jaymun has also had an amazing battle with this disease and was also sent home to wait out the last few days of his life. Jaymun is still alive and is fighting this disease like a champ. His story can be followed on his site - Jaymun's Journey.
We are now going to try some herbs along with the traditional chemo's that are being recommended to us by the doctors. Everything gets cleared through the doctors and pharmacists............and we are desperately hoping it all makes a difference and brings Hunter's cancer down to a manageable level.
We are at a loss for words. We are angry and confused and devastated and are feeling cheated like never before. It's an incredibly, painful heartache that does not go away. I feel sick to my stomach and I constantly have anxiety and fear traveling throughout my whole body. The sounds of Hunter suffering will echo in my ears forever...............
A very sad daddy holding on to Hunter for dear life.
Getting ready for his Cat Scan. Swollen and sad with a shiner on his left eye.
Snuggling with my bean.
Getting ready for Versed - the happy juice. Makes him stay still and not panic during the procedure.
Happy juice taking affect.
Going in for the Cat Scan.
One last giggle now that the Cat Scan is over.
Doing a chest Xray to locate the fluid in his lung. Hunter was sooooo not happy to have to get out of bed for this.
Getting ready for his Echocardiogram to check the status of his heart before we started the last round of chemo.
This is the chemo Mitoxantrone. It's electric blue and is as potent as it looks. Would not want to mix that in a cocktail. You'd be drunk AND stupid.
Chemo kickin' his butt.
One of Hunter's 105 degree fevers.
Sneaking in a smooch.
Hunter and dad.
Getting ready for more chemo. Not particularly happy about it. I think he's trying to hide. Don't blame him.
Zen and I smiling the night before we got the devastating news. Haven't smiled like that since.