The Making of IRON-HUNTER

DAY -10 UNTIL TRANSPLANT

Here we gooooooo.................

Chemo is officially running into his body and the conditioning for Transplant is underway.

For the next three days he'll be getting a chemo called Fludarabine, one that his body has never seen before. That's a good thing........look out Leukemia.

After 3 days of chemo, he goes into TBI, which is Total Body Irradiation. Hunter has never been radiated before either. Also a good thing. He'll have 4 days of radiation, twice a day for an hour each time. Whoa.

After 4 days of radiation, he'll then get another chemo by the name of Cyclophosphamide for the next two days...........Cyclopho.....whuuut?

On Sunday June 14th will be his day of rest. (And a day of serious praying!!!!)

And then on Monday, June 15th, they will transplant the cord blood unit into Hunter's body with hopes that the last chemo and radiation killed every last bit of any Leukemia that might be hiding out in Hunter's body and this new marrow comes in and takes over. (Many, many, MANY thanks to Be The Match, for having the ONE cord blood unit that was eligible for Hunter's Body. You are seriously saving his life). We owe you..........BIG TIME.

After that....we have about 45 days of hell. That's when we'll be dealing with all of the toxicity that Hunter has received, any kind of organ failure, graft failure, infections, bleeding, anemia, graft vs. host, all sorts of good, fun, white knuckle stuff. (Another good time for lots of focused praying and healing white light).

The doctors have been preparing his body all week and have been running a number of tests to make sure that his body is in a place to go through with the transplant.

First he got his routine echocardiogram, which for the fist time showed permanent damage to his heart. That was a bummer. We kind of knew that was coming. But still didn't want to hear it. So I guess we'll be pushing Hunter towards his music interests instead of sports as he gets older. We're hoping for something like a music producer since he's got such fantastic rhythm and can really hold a beat.

He had his Cat Scan to check on his Typhlitis and the rest of his insides. And the good news there is that the TYPHLITIS is GONE. Hallelujah!

He had an MRI to check on his Myositis.......and that is still there???? But hopefully starts to subside soon.

He had his kidneys checked yesterday, (GFR Test)....and we are still waiting on results for that - but I am assuming that since the Fludarabine is going in to his body as I type......that his kidneys are capable of handling what's coming their way.

He had a Chest Xray to check on his lungs.....and there was a slight collapse, which they said would repair itself. It would help to get Hunter out of bed and moving around a bit more......but he's kinda not in the mood with swollen legs. However, he has been wiggling his butt off from the waist up!

And he's also had a number of blood tests to check for a whole slew of other things, which also came back positive and ready to move forward.

So Hunter's on his way to getting really, really sick..........but then he's going to eventually recover and he'll hopefully be on his way to living the life he was meant to live. He's been so, so strong up to this point, and has handled the toxins incredibly well, so everyone is extremely hopeful and very optimistic. People all over the world are rooting for him and I know he's got the strength and the courage and the endurance to pull it through. His overwhelmingly positive spirit shines on and he is on his way to becoming IRON-HUNTER.

Having a good time!



Hunter Chillin' like the cool cat that he is...



Hunter getting contrast before his Cat Scan. It's the fluid that makes all the good stuff light up once he's in the scan. He HATES contrast. We have to give him about 3 full syringes worth over the course of an hour.






Some REALLY fun video of Hunter getting his giggle on - still feeling the effects of Versed after his Cat Scan.


CLICK HERE FOR YOUTUBE VIDEO



Heading to Xray.



Buzz Lightyear was also there again getting an Xray. He's having some work done as well. Who better to share the experience with - they compared stories and battle wounds for HOURS! Hunter's one-up on him......and then some.



Getting ready for his MRI.



Put to sleep for the 2-hour long procedure.



Hunter listening to his heart himself - doubting the docs diagnosis. He says he feels just fine.



Lovin' our Bean.

Hunter's my HERO.......for Life

Hunter blows us away in every way possible. He's such a unique kid and he's starting to glow more and more every day. When he was first diagnosed with AML Leukemia at 14 months......he was still just a baby. He was just then starting to show his colors. And then once he got sick....he kind of zipped it up for awhile and kept to himself. Now........he's full on enjoying himself, laughing and playing and expressing himself like never before. It's a strange thing that makes it that much harder to believe that he's really as sick as he is. There is a cancer in his body that could take his life and it just doesn't seem real when he's racing around the room, giggling, having the best time he's had in the last year. Mentally..........it's kinda no fun.

We still haven't had our official "Bone Marrow Transplant - talk" with the doctors - but apparently, it's a really hard session. We'll be told the worse possible outcomes, all the terrible risks and all of the horrifying things that we'll be experiencing for the next 30 to 90 days. We've heard through the grapevine that actually seeing your child get radiated leaves a forever imprint in your mind that will remain with a punch in the gut for the rest of our lives. After the actual transplant, there is a disease called Graft-versus-host which will be when Hunter's body accepts or rejects the bone marrow that is trying to take over his body. It's the disease brought on by the effort to cure the leukemia that could actually kill him. Apparently we were told not to wish for it, but that it was a good thing if he got it "a little".........but that if he gets it too badly.........there's no pulling back.

He looks at us and smiles so big every day now.................and he has no idea what's about to happen.



I've collected some photos of some of Hunter's procedures and events over the last year 1/2 of his life. Much different than mine or Zen's first 2 years of existence.

Below: Hunter's 1st round of chemo, December 2007, at 14 months.



A 104 degree fever.

Hunter and Mom.

Hunter and Dad.



Bone Marrow Aspirate recovery.



Hunter's Chemo IV Pole.

Playing in the hospital windowsill. 

Hunter's Pic Line. He's had 5 of these.



We refer to these as the "Acid" Eye Drops. Hunter HATES them.



Dad letting go. We've said it before..........it's one of the worse parts.



No words for this.



Sometimes this was a daily dose of meds.



After all the Pic Lines came out, he was given a Broviac. He will be getting another one of these right before his bone marrow transplant.





Routine Echocardiograms to check the status of his heart.

Tuning everyone out.

Swollen and sad.

Cat Scan

Bone Scan.




Under Anesthesia.



After his Bronchoscopy - 104 degree fever..............again.



His Pneumonia.

****************WARNING*********************

Bad reaction to drug.

But when it's all said and done.....................he still ends up smiling.

The feared Cat Scan results

Can't quite say we were expecting good news.........but we certainly weren't prepared for the news that was delivered.

Something has very aggressively taken over Hunter's left lung. His pneumonia started in his right lower lung and seemed to be dissipating. Well it didn't go away. Whatever it was has now spread over to the left side and is causing the doctors to be very troubled.

To get a blow like that was rough. Hunter has been on heavy duty antibiotics now for 18 days. It's supposed to go away......not spread.

His little body is working and pumping so hard - just to breathe.

The Cat Scan did a number of scans and shortly after the doctors gave us the preliminary results. They suggested a Bronchoscopy based on what they saw. Whatever it is that has moved in to Hunter's lungs could be a bacteria or a fungus or something viral and it needs to be examined a little closer. We were told that it most likely was NOT the cancer. So that was at least nice to hear.

They performed the surgery yesterday and it went well. With the help of the bronchoscopy they were able to go into his lungs and extract some of the foreign substance that is present. Sometimes it can take up to 5 days to fully examine it and watch it to see if something grows from it to determine exactly what it is.

Every surgery always poses risks, however, in Hunter's condition, it's become very dangerous and life threatening. Forms are signed and the procedures are explained - but there are never any promises. Normal protocol. Because of Hunter's inability to breathe on his own and the fact that his lungs are swollen and contaminated - he has to now be intubated. That basically means that they need to place a tube down his trachea to protect his airways and provide a means of ventilation. He stopped breathing on his own on one of his last surgeries and they had to immediately intubate him at that time to save his life. Now, without question, they intubate him at the very beginning.

Scared to death and the drama continues. We often joke, instead of just getting the flu.......Hunter gets cancer, instead of just a cold......Hunter gets an pneumonia, instead of the antibiotics working.........his condition gets worse. Everything is full throttle with this kid. So I imagine by the end.......he's going to beat the shit out of this cancer.


Hunter has just received the "Happy Juice" and is obviously eagerly awaiting the Cat Scan. Good fun.



Dad was smart enough to download Sesame Street onto his iphone. I can't imagine who wouldn't want the company of Bert and Ernie on the way to a procedure??



Still watching.



.....and still watching.




And when he can't hold it anymore - dad helps.



And finally after surgery - he's allowed to eat!! He ate more in that 10 minutes then he had eaten all week. He's obviously very pleased with himself.