9/3 Long Fear Filled Nights

As we enter this next phase of  Max’s journey our nights are filled with stress and fear.  I sit and watch Max sleep long into the night, wondering if we are doing the right thing, wondering what the next few years will bring to our little Love.  We have made it through 3 months of non stop surgeries, procedures and chemotherapy and the tumor has shrunk and is no longer visible to today’s technology.  It takes millions of cells joined together to be detectable to an MRI, so it is the undetectable single dormant cell that fills my nights with fear. 

During the first few months when Max’s cancer returned and was growing into his brain cavity, we were desperate and knew that we had to let the professionals take charge and let the drastic procedures happen as quickly as possible.  Now that this phase has passed, I watch Max sleeping, and all I can think about is how the chemo is slowly poisoning him.  Poisoning the cancer and poisoning every other cell in his little body. 

We meet other kids in the hospital who have been battling cancer longer than Max, their bodies are so run down, they have both physical and mental losses, they can no longer fight, the cancer is taking over. This is so hard to see and so hard to separate from Max’s future.  When is the chemo enough, when will his bone marrow be completely obliterated so he can no longer produce life giving cells?  Max’s supplement regimen is more important now than it ever was before.  We need to do everything we can to help restore his bone marrow and immune system from the chemo.  Max is still so strong, he continues to rebound quickly from everything thrown at him and this fills us with hope that he can beat the odds. 

8/23 Toe on the mend, another chemo down and a few days of much needed R&R

After 6days in the hospital and all signs pointing to Max’s infection clearing we decided to postpone Max’s next round of chemo for a few days and head home for the weekend.  The infectious disease team determined that the infection was bacillus cereus, a bacteria common in soil.  What is not so common is getting an infection from it.  A healthy person has a neutrophil count of around 5000 in their blood to help fight infections, Max’s count last Sunday was 12.  Apparently his infection will make the medical journals.   

With a house full of family; granny, grandpa, auntie Tammy, Haley and her friend Sofie, Max had a great weekend.  On Monday we returned to Rady’s for another round of chemo which went fairly smoothly.  The cycle is becoming a little more predictable; 2-6days of chemo, a few days of feeling cruddy, a few days filled with energy, a few days with flu like symptoms and then he reaches nadir when his immune system disappears.  As soon as Max rebounds its back to the hospital to start again.  The good days are few and far between so we continue to maximize the good moments with our little Maximum Pleasure.   

We just got back from a fantastic weekend at Dean Zack’s annual Vcamp in Santa Barbara.  All good family fun and Max was surrounded by his buddies.   Max finally got a real taste of summer with 3 days of swimming in the pool, playing on the beach and running around at night under a huge moon.  

Ps .  A big thanks to the gang at Best-A-Wan for always making Max feel so special and for all that you do for usJ

8/9 Gheez….Emergency Room for a Stubbed Toe

Max reached  his nadir this weekend and what would typically be a minor scrape for a healthy kid has put Max back in the hospital with a serious infection.  Such a bummer to ruin his week at home and ever so scary.  Max  battled a fever for 36hrs and needed a blood transfusion. He is on some powerful IV antibiotics and taking Tylenol, Codeine and Morphine to manage the pain. He had an MRI to make sure the infection didn’t spread to his bones, the infectious disease team has been checking him closely and the ortho surgeons did a surgical flush on the abscess.  Gheez…for a stubbed toe.  Poor kid.  How are we going to make it through another year of this, aye carumba.
  

ps. Thanks so much to our new pal Anita at hennasphere for putting the airbender henna tatoo on Max’s head and also a big thank you to Molly the Owlbox fans for your wonderful kindness.

7/31 A little good news to help us through the grind

 The latest MRI shows that Max’s tumor has shrunk, the cancer is responding to the latest chemo regimen.  This encouraging news helps us get through the long and painful days of treatment.  Max had surgery yesterday to insert his port then started his second round of chemo.  He woke up today throwing up with a bad stomach ache so more drugs on board to help him sleep through the pain. 

 Max has been through such a beating this past 6weeks and we finally have a small break from the hospital coming up.  If all goes well we should have approx 10days at home to care for him through this next nadir with only a few shots and a couple of visits to the hemoc clinic.  Knowing Max he will rebound quickly and be full of life and fun and ready to play with all his buddies. 

7/27 OMG….the hair has already started to fall out

Avatar Max completed his stem cell harvest in 2days, 6.4million cells.  We get to go home for two days and Max feels great which makes our whole world a happy place.  Next up is surgery in 2 days to remove the dreaded aphaeresis catheter, good riddance tubes, hello swimming, hello summer.   Well at least a bit of summer, next round of chemo starts the day after surgery. 

7/26 Harvesting the Stem Cells

Max harvested 3.5million stem cells yesterdy and has another 1.5mil to go.   The stem cell harvest is done the same way the t-cells were harvested at the national cancer institute; an aphaeresis machine sucks all his blood thru a centrifuge.  We are banking the stem cells now while he is strong with the hope to never need them; stem cell transplants are extremely harsh and risky, they are a last line of defense.

 The first round of chemo went as well as can be expected with 6 straight days of IV infusion of Ifosfamide, Etoposide and all the supporting meds and fluids.  On the 4^th day Max had such severe abdominal pain that they had to give him morphine to get through the night.  After chemo Max had a few days of nausea and throwing up before starting to feel better.  He hit his nadir (blood counts close to zero) on day 9 and he started to approach a fever, he managed to stay just under 101deg so we were able to keep him home for another day.  His counts started to soar the next morning, just in time for a good stem cell harvest. 

 The most difficult part by far of this first round of chemo has been the shots, daily GCSF shots to boost Max’s white blood cells;  Mark and I have to administer the shots.  This part of our day really sucks!  Max is sitting in the hospital now playing the Wii, all smiles and fun.  The weather outside is gloomy and grey, he believes that the summer sunshine is waiting for him. 

The Cancer Beating Continues

Although the surgeons were successful on their part of the tumor resection, Max’s oncologist was left to deliver the bad news that cancer tissue remained in an inoperable area of his head.  The post op MRI shows that the cancer has invaded Max’s cavernous sinus, this is a tunnel into his skull, a small space that holds 7 major nerves and the carotid artery. 

We went to the UCSD Moors cancer center yesterday to start Radiation engineering for Max to receive another 6weeks of radiation.  Since this area has already received a maximum safe dose of radiation the odds go up exponentially that their will be damage to his optic nerve, carotid artery, and/or the nerves that control facial movement.  The effects could be immediate or within the next few years.

On Monday Max had surgery to place a semi-permanent aphaeresis catheter that will be used to do a stemcell harvest, these cells will be banked for future transplants if needed.  Max started chemotherapy yesterday and after about 4 hours he began to fade and feel cruddy and then slept for 15hrs.  Poor little guy, it breaks my heart to sit here and watch him go through so much.  He woke up this morning bright eyed and happy.    

 Last weekend we crashed Dan and Sydney’s annual family reunion on the east coast at Rehoboth beach.  Max had a great time with Syd at the beach and rode all the rides at fun land.  Back on the west coast on Sunday Max had a surf lesson with his favorite instructor and buddies.  As for me, I’m trying to keep working which isn’t easy but Qualcomm is allowing me work an intermittent as needed schedule which is really helpful.  Mark has been going home everyday to take care of the pets but spending a most of his time at the hospital.  He is redecorating the hospital room, brought in his big computer with some fancy software so he can watch our DVR from our home cable box, not sure how it works but its great.  He also brought in the Wii and a lounge chair.  I had to put the brakes on and limit the remodel to ensure we can get it all home in one car load.  Some things never change, gotta love him for it. 

The Vampire at the National Cancer Institute

Max was biten by a vampire yesterday, at least that’s his story.  He was punctured in his jugular and all his blood was sucked out.  We are in Maryland this week to enter Max into a clinical trial at the National Cancer Institute.  The trial doesn’t actually start until Max has completed approx 8mo of chemo and has no evidence of disease.  The researchers will attempt to make a custom vaccine that will  train Max’s t-cells to fight his cancer cells from the tissue that was resected 2weeks ago. 

Max had a tube surgically implanted into his jugular and then via aphaeresis his blood siphoned through a centrifuge to extract his T-cells.  It’s quite disturbing to watch all his blood leaving his body and rolling around a big machine before being put back in.  The puncture site was pretty painful for Max to deal with and the entire procedure took 15hrs.  Another brutal day for the Kleck family that we are glad to have behind us.    

Max had a great 4^th of July.  It was hard to believe that only 11 days after surgery into his skull he was at the beach boogie boarding like a kamikaze, then at La Costa for  kid jumpy’s followed by firworks with all his buddies.  What an amazing kid.  This weekend we will be taking Max to Rehoboth beach with Dan and Syd to try out the east coast beaches.  Next week more surgery, scans, and chemo starts.

Battered soldier comes home

Home sweet home.   Its hard to believe the extremes and the torture that Max has been through, harder to believe how resilient he is.  Home just 3days after neuro and head surgery, amazing.  When he first woke only an hour after surgery and wanted that tube out and fought hard for it, I was so relieved to see it was him, that his brain had not been damaged, my Max was fully intact. 

The days after surgery were filled with all forms of torture that no child should ever go through.   The first morning after surgery they xray’d Max and found that the central line (high flow IV into an artery in his chest) had been placed to deep and can cause heart arrhythmia so it needed to be moved.  This was done while Max was awake and entailed removing stitches, moving the line and re-stitching him.  It was agonizing pain for him.  The resulting stitches were placed in too tight and caused severe pain all day.   One of Max’s neurosurgeons  came by and volunteered to remove the worst stitch.  She tried with the standard tools but it was too tight so she ended up using scalpel to cut it out.  This was only the beginning of the pokes, prods and pulls that continued over the next few days.  Right up to the end, several nurses spent an hour trying to remove the final two stitches of his central line before they gave up and just left a stitch in for someone else to deal with next week.  Max, Mark and I were completely wet with sweat from the torturous episodes.  Max has been traumatized from the years of pokes and prods that he has been through, Im not sure how we will get through the years ahead.   Not sure how he will get through the removal of the stitches in his head next week, the staples in his head the week after, the aphaeresis catheter placement and blood harvest coming up, the chemo, the stem cell harvest………This is only the beginning of the journey. 

Despite the hell we went through there was also so much support and kindness from friends and from the medical staff.  Patty had our nurse friends all ready to go to give Max VIP treatment and the best of care (and to bring me lots of Starbucks).   Dr Armene who interrupted her surgery schedule to race down to the MRI and remove Max’s drain from his head while he was anesthetized so we could avoid another traumatic session.  Dr Levy and Dr Weisman for doing a great job and returning my hero back to me intact. 

Max had his surgery yesterday.

The surgery took 8 hours and went well.  The neurosurgeon was able to make a clean resection and the tumor had not entered into his brain dura, this is great news.   The head and neck surgeon removed the bulk of the tumor cleanly, it was a little fuzzy where it spread into the infra fossa muscle that controls chewing so he removed a portion of that muscle as well.  He removed the visible cancer tissue and now recommends spot radiation and chemo to treat any remaining cancer cells. 

Max went into the PICU for recovery and began fighting immediately.  We expected him to be intabated over night but he woke up immediately and wanted the breathing tube out. The extabation process takes a while but Max did great, and so did dad, he really helped Max get through it.   Right after that he asked for a slurpy but settled for a popsicle.   He is sleeping calmly now.   His vitals are strong enough that they will move him from the PICU to the intermediate care unit today, it will be another long day of removing nasty tubes, IV’s, catheter and a drain, just amazing how many.   Max is being so brave and strong.