The peanut gallery...

...or was it an almond.....or a walnut???

So a pretty eventful week. Hunter threw us for a loop and it was not something that Zen or I or even the doctors were thinking was on the game plan.

It started on Tuesday. Hunter was vomiting and for some reason, he wouldn't stop. He was continuing to be fed with a tube that went in his nose and traveled all the way down to his belly. He was getting this food three times throughout the day and all through the night. He seemed to be handling these feeds with no problems whatsoever. So every day they would "up" his dosage and see if his body would tolerate more. Well is was all going perfect until the vomiting fest began. Everyone was perplexed. Was he getting too much food? Why is he throwing up now after he was doing so good?

So Tuesday was the crappy puke day and then Tuesday night.......oooooh nelly. Dad got puked on three times. Once at 1:30am, again at 4:30am and then another brief episode at 5:30am. Our job the whole night was catching throw-up and changing sheets. He kept us busy. On the very last puke..........up, up, and out came the feeding tube. Out his mouth! So now he had the tube going in his nose and the other end was now coming out his mouth. I often keep referring to the idiot high school kid, (in almost everyones past), that would take the school lunch spaghetti and inhale it quickly in his nose and then string it out his mouth for some lunchtime entertainment. Well Hunter wasn't laughing and it looked incredibly uncomfortable. So Zen, acting quick on his feet, yanked it out and gave Hunter some relief. It seemed to make it better. Gross, but better.

So the feeds instantly stopped and we had to wait until the doctors made their morning rounds to see what our next step was going to be. Hunter is terribly skinny and to stop food going into his body is not an option.

Well now......morning after, or shall I say a couple of hours later....right around 9am - Hunter decided to choke. And I don't mean a slight cough and showing some discomfort. I mean full on choke, gasping for air and not being able to get any. This lasted for about 15-20 seconds of no air going in or out and Hunter's face turning bright red. I keep thinking I can't see anything else more that will frighten me to death......nope, I was wrong. Hunter was not breathing. Zen picked him up and slapped him on his back a good four times and all he kept saying was, "come on baby.....breathe.....breathe". After 20 seconds and a few slaps - Hunter caught some air and started to breathe again.

So we thought that would be the end of that excitement - but guess what? Hunter had about 4 more episodes like that where, completely out of the blue - he'd start choking and gasping for air. No one had any idea what was happening to our little man.

Because he had chemo and the effects of the chemo are starting to kick in.....Hunter has no immune system. So the doctors don't like to operate or do surgery on anyone who has no immune system - so another bronchoscopy at this point was out of the question. Too dangerous and the risk for infection is too severe. Something was dreadfully wrong and there was no way to find it.

Well now by the fifth choking episode - Zen had become a professional back slapper. Hunter's face was turning red again and this time it seemed like it was lasting a good 20 to 25 seconds. Too long. Zen slapped and slapped and slapped....come on baby....come on......slap, slap. And up came the nut that was stuck in Hunter's airway and it gracefully landed right on Zen's shoulder. WHAT???????? Are you kidding me? After dealing with Leukemia and pneumonia.....a NUT was about to take our kids life????

Just seems unreal. For God's sake.

Ever since that nut came out - Hunter has been perfect. Seriously. No more puking, no more choking and he's eating like a champ. Real food!!

Not sure how the nut got there and there's a huge debate between Zen and I and all the doctors as to whether or not it's an almond or a walnut. But regardless of what kind of nut - Hunter will be on the no nut diet until he's 25 and knows how to do the heimlich remover on himself, (just in case we're not around). Too bad for him......but good for mom and dad.

ps. To give Zen some credit - he did think it was a nut and suggested that to the doctors on the morning rounds. That's when the bronchoscopy was ruled out to see if it is in fact a nut that is blocking his airway. Dad was right. And dad got it out.

The nut stuck in Hunter's throat. We placed it next to a pill so that you can see just how big it was.



Happy times when the feeding tube was working.







Not so happy times. Resting inbetween the throw-up spells.



Post nut and feeding tube. Woo hoo!! Waaaaaaay happier.





Admiring his hero.

Hunter's having a bad day

It's been a crappy day for the little guy.....and thus a crappy day for us.

He woke up bummin' and for some reason, just didn't have a smile. He was all giggles last night and laughed and played like the good 'ole days. So quite a change from last night to today. Let the roller coaster ride continue.

He has a really bad cough again and each time he goes into a coughing fit...it causes him to vomit. The lovely thing is that lots of flemmy, mucus seems to be coming out - so maybe it's for the greater good. I'm sure little man has lots of stuff in his body that just needs to get out. Another lovely thing is that Zen and I weren't the lucky recipients of the puke this time. Yay for mom and dad!!! No fun to smell like throw-up all day.

They immediately did a chest Xray to make sure that his feeding tube isn't causing him any discomfort or is in a place where it shouldn't be. But the Xray came back and the tube is in place. The everlasting pneumonia, however, is still there. Damn that thing.

So he's now back on oxygen. But at least he got a little bit of a break. The fevers have also subsided. So I guess it's 3 steps forward......2 steps back.....2 steps forward.....1 step back. Looks like that those will be our dance moves for the next 4-5 months. Thank god Zen and I are good dancers!

Hunter on a good day!

Oxygen............who needs it?

Hunter's been off oxygen for 2 days!! His lungs are finally strong enough to breath on their own! His pneumonia still seems to be hanging out, but it's not nearly as present as it was. YAY!!!

He's finished one round of chemotherapy and we'll find out in the next couple of weeks if he's in remission. He'll need to be in full remission for the Bone Marrow Transplant......so now we just sit and wait.

The Bronchoscopy results came back and so far nothing has grown. So that's also good news.

He was up and walking on his own for the first time today and that was WITHOUT ANY PAIN MEDICINE. Hunter's back!!!!

He's done a complete 360 since the first day we were here and he now throws down smiles all the time. He even does it on demand. Wow. He just steals our hearts every time.

One of the teams of doctors that hovers over Hunter on a daily basis to assess his condition and inform us of the plan for the day.



Hunter on fire the night before his Bronchoscopy.



Once again, Ernie accompanying Hunter on the way to his Bronchoscopy procedure. Such a good friend.



Dad saying goodbye and giving him one last kiss.



Off he goes.



This is where they close the door on Mom and Dad. I hate that part. I soooo wish this was a spectator sport.




Dad there to whisper sweet nothings into his ear as he wakes up.



Taking a nap after the procedure. Long day.



Waking up.



A good quote from Kung Fu Panda - "yesterday is history, tomorrow is a mystery, but today is a gift........that is why it is called a present".

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.

Bye Bye Leukemia...........Hello Pneumonia

Hunter's lungs infected with an Pneumonia



As if our hearts haven't ached enough...............

We are going on our 8th day of Hunter battling a very severe pneumonia. Kinda not fair. He is being a very good sport, as always, however mom and dad seem to be wearing a little thin. I think it's one of the few times that I have allowed myself to get angry and frustrated and pissed off at the world. I am so tired and over our little man being ill.

It started around Halloween when Hunter had the return of the 104 fever. Needless to say, we didn't dress up and go trick or treating. Instead, Zen and I laid over Hunter all night and sobbed, begging and hoping that it wasn't the return of his cancer. He ended up waking up in a good mood and seemed to be fine for the rest of the day and after. Lovely.

Then another fever hit at the end of November. He was down for 3 days. Seemed to pass.

Well December has been a whole different story. It's basically sucked. He went off all meds on Dec. 1st and was no longer being protected from any kind of viral or bacteria infection. A step most cancer patients have to take eventually. Hunter had his monthly check up at Childrens Hospital in LA and actually went to the regular Pediatrician for the 1st time in 15 months. Nothing was detected and he skated through his routine blood exam with flying colors. He came back Leukemia free and seemed to be further on his way to living a normal, healthy life. That was on the 11th of December. On the 17th of December, he was down again and was very sad and wasn't moving around too much and definitely didn't leave our arms the whole day. Obviously not feeling well at all. We arrived in Oregon on the 20th and he was still not enjoying life as usual. Seemed to pass and Christmas eve and Christmas day were great. He was ripping open presents like he's done it for years. Good times. Out of the 3 Christmas' he's had, this was the best one.

Hunter on Christmas Day.










Well Merry Christmas and Happy f'in New Year..............here have an Pneumonia.

All of a sudden he developed a cough and a consistent runny nose and was getting extremely skinny. He'd lost 4 pounds. His appetite was gone and he wasn't acting his normal, happy self. New Years Eve rolls around and we end up canceling all plans to stay home with Hunter and try to get him better. Nothing was really working and he was getting 102 to 104 fevers on a regular basis. We communicated with our Oncologist at CHLA and she said he might have a walking pneumonia or the flu and that it wouldn't be a bad idea to bring him to the doctor. We went to Doernbechers on Monday and explained all of his symptoms, told them his history and explained what our Oncologist had said. At this time he was having pretty severe coughing attacks and some actually caused him to vomit. They took in all of our input and decided that the next best step would be do a chest/lung Xray. Low and behold........they found his Pneumonia. It has attacked his right lung and seems to have moved in and found a cozy little home. They immediately started antibiotics at 5pm and then all we did was sit and wait. The antibiotic that they gave him, Amoxocylin, was supposed to kick in quite quickly and we were supposed to see pretty immediate results. He did improve a bit, but 2 days later, Hunter was still not eating as much as he should, his cough wasn't getting that much better and he was now 104.......often. Back to Doernbechers for another chest Xray, followed up with a stomach Xray. The pneumonia was still there, but it had gone down in size by about 50%, so that was great news. However, the antibiotic that they were giving him was not strong enough to get rid of it completely. Because his tiny little body has had such mac daddy antibiotics with his cancer, they decided that he might have built up an immunity to less potent antibiotics. So in come the bigger guns. They started him on Cefdinir on Friday and now we are in the sit and wait period again. It's now Sunday and his cough doesn't seem to be getting that much better. He was on fire all day yesterday and a few times during the night. At 3am he was 102 and coughing up a storm. I've been able to get in 1/2 a yogurt for breakfast so far, but he seems to be turning away everything else. He also seems very tired. He doesn't appear to be getting better.

Back to Doernbechers 1st thing tomorrow morning to hopefully find a remedy.

I can't begin to explain what this is like. If anyone told me that it's possible for your heart to bleed..........I feel as if I know what that would feel like. I choke back tears on a daily basis and have the fear of losing my son hanging over me like a dark cloud. So many people have said that cancer can open your eyes and open your life up to an overwhelming amount of appreciation for all things. It changes your perspective. I believe that and we've definitely changed our lives, and things that use to be important......are no longer. Hunter, the quality of life, enjoying it, and being together as a family seem to have taken precedence. However, I sometimes also refer to it as the cancer curse and I'm now realizing that we have constant worry for the rest of our lives. Deep, terrifying worry.

That being said, I've gathered up all my tears and picked my heart up off the floor and will now move on with the rest of our day. The constant worry comes and goes and we have had several amazing moments with Hunter since we've left the hospital. And expect nothing but more. I'll hang out with him on the couch all day and try to feed him whatever he'll take. We'll try to make him as comfortable as possible and we'll try to make him smile. Yesterday we got a laugh by dancing around like monkeys. Maybe we'll try that again.

We will not be defeated.

Hunter during our Hospital visits.







Purple popsicle lips. They help with getting fluid into his body.



Hunter before the Pneumonia kicked in.