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.

Sunday, July 5, 2009

Engrafting like a CHAMP

(20 Days Post Transplant)

Hunter going in to his Cat Scan with dad's iPhone. That thing has SAVED us and has allowed Hunter to enjoy most of his procedures. iPhone mixed in with versed makes for a very happy Hunter.



So we've now lived in the hospital with Hunter for the last 81 days .......STRAIGHT. We came in Easter week - expecting to do a quick round of chemo and then head to transplant. Obviously....we've taken the longer route. We've been in and out since January 12th, when Hunter first relapsed, with only being home in between about 3 weeks. So basically, it's now been 7 months and we are truly almost on our way out.

Hunter's counts are finally coming up, which means that his "new" marrow is starting to engraft and make its own red cells, whites cells and platelets. He is still getting transfused with platelets almost daily.....but now, it's likely we will be able to transfuse less starting this upcoming week.

His infection in his lungs seems to be less of a worry. His Xray was followed up with a cat scan and then a bronchoscopy on Thursday of last week. They also did a respiratory viral panel from his mouth and nose to try to locate the source of infection and the cause of his fevers. Needless to say.....everything has come back negative and the only thing that was switched was one of his antifungals. And low and behold - the fevers have subsided. He no longer needs oxygen and the need for morphine has also dropped.

The signs of his "new" marrow taking over have been a rash on his face, rash on his arms and his ANC count today being at 610. Anything over 500 for 3 days in a row means engraftment is taking place. YAY!!!!!!! That's another HUGE step to recovery and another nice indication that the Bone Marrow Transplant so far, has been a success.

He continues to be on Vancomycin & Meropenem, (antibiotics), Ambisome, (anti-fungal), Ursodiol,(which protects his liver), Cellcept, (which helps with his Graft vs. Host disease), Cyclosporine, (which is an anti-rejection medicine), and prevacid, (which helps with heartburn). He has also been getting Lasix the last few days to help with the draining of all of the fluid in his body. Quite an extensive list to keep him going and safe.

We are considered "likely" to go home when he starts to eat and drink on his own, when he can take all of the above medications that are still needed orally instead of through his IV, when he no longer needs blood transfusions, and when there are no more signs of fevers or infections. So we could actually be home in a couple of weeks!

His nightly blood draws continue to check for any signs of Leukemia returning......so we get the print out every morning, hoping....with a huge knot in our heart and stomach.....that we don't see any results of "atypical" cells. NOT a good sign when we see those and something that we never want to see ever again.

Our journey is not nearly over, but it is looking like we will hopefully be one set of parents that gets to leave the hospital with their child alive and well. And believe me..........we feel exceptionally grateful for that and will forever count our blessings.

Me and Bean waiting for the Cat Scan.





Hunter before Versed.



Hunter after Versed.



Hunter's lung mystery.



Slowly going off to sleep getting ready for his Bronchoscopy.



Daddy saying goodbye.



Waking up in recovery.

3 comments:

MJ said...

If I may be so bold ... Frakin' A! I am so happy to hear everything is looking positive.

Hunter is by all accounts the toughest individual I have known (truly an Iron Hunter!). My thoughts and wishes go to you all that Hunter is eating, and taking those meds orally very soon!

I will be waiting for the 1st post from home showing the next "counter-top boogie" video!

Much love & hope - MJ

catherino said...

This is such a fantastic update! Way to go Hunter - you're still in our prayers sweetie.

Cathy

Matt said...

YEEEEEEESSSSSSS!