Jackson's Journey to Kick Cancer's Ass

3F8 Round 2 – The Boys are Back in Town

Jackson and I returned to NYC on Sunday night after a full day of playing at the house while Meredith and Cody remained at home to hold down the fort.

We attempted to avoid the 2 hour wait in urgent care by arriving late…but no such luck. We arrived at urgent care around 10pm but didnt’ get transferred up to our room until around midnight…I guess shift change wasn’t the reason for our 2 hour delay last round. Hospital time…uuugghhh.

Round 2 was significantly easier than Round 1 for Jackson (excluding Day 1).
Low points:
– Scary drop in blood pressure during his first day of treatment. Jackson turned very pale and became fairly unresponsive. As a result, the infusion was stopped and he was given an IV bolus to stabilize and improve his blood pressure. Scary thing to watch – please don’t do that again Jackson or I will be in the bed next to you with a heart attack.
– Jackson still experienced a large amount of pain during the treatments. This was pretty well-managed with pain medication and hot packs. We curled up during the worst part of the treatments and despite being in pain, he calmed down fairly quickly. Jackson you are one tough SOB!
High points:
– Jackson generally bounced back from his treatments by 2-4pm each day. After the first day, he was allowed to be taken off of IV fluids and run around untethered until the following morning.
– Jackson playing and playing. He was very fond of tearing apart everything he could get his hands on in the playroom. We also went on lots of rides around the hallway on a fire engine and car.
– Jackson’s guitar solos. On Day 3, Jackson found a wooden guitar in the playroom and decided to do rocking guitar solos in the hallway for everyone who passed by. Jackson is Rock Star. We enjoyed trying to paint the guitar but ended up with more on Jackson and me than the guitar (you can see the paint I couldn’t get off his shirt in the picture below).
– Jackson learned that cookies and ice cream go well together, especially when the cookies are dipped in the ice cream. Perhaps this delicious treat was part of the reason we never got to bed before 11pm each night.


– Jackson found a bag of dried strawberries right before Day 4 began. He enjoyed eating them and smearing red coloring on himself, me, the sheets, and anything else within his reach.

– Jackson learned the phrase “I love you to Daddy” – best words I’ve ever heard. I love you so much buddy!
– Leaving a day early! Round 1 we had to stay until Saturday before we were discharged. Since Jackson has done so well, we were discharged on Friday.
Round 2 done – Fuck You Cancer! Radiation is up next for next week.

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Jackson’s a Big Brother – Welcome to the Madness Cody Flynn

Jackson became a big brother today!

My sister and brother in-law were nice enough to come to CT to watch Jackson while Meredith and I headed to the hospital to induce Jackson’s brother.  After a lot of waiting around, Cody Flynn Colder entered the world at 7:25pm weighing in at 7 pounds, 4 oz.  Everyone is doing well.  We hope to be home with everyone by Thursday.

Jackson enjoyed his time with Aunt Linda and Uncle Marty.  He had plenty of sword fights, trips to the play ground, and late night shenanigans to keep him occupied.

 

 

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Swinging at Compo post 3F8

We arrived back home around 4:30pm on Saturday. Jackson is doing great. Most of the pain medications have worked their way through Jackson’s system and he is comfortable and extremely active.

After running around the house and backyard for awhile, we capped off the evening with Jackson’s favorite food, pizza, some ice cream on the beach, and a little playground time.

Beautiful night! It’s great to be home!

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3F8 Round 1 – Over and Done

Well…we are done with Round 1 of high dose 3F8 and it sucked but we are through it. Jackson handled it well according to the doctors. I’m not sure who it was worse on Jackson or Meredith and I.

Low points:
– Jackson experienced a lot of pain during the treatments. These were mostly managed by giving pain medication and hot packs. The pain often lingered into the evening.
– Jackson experienced some swelling in his face and some internal and external hives which made him itchy and uncomfortable. Most of these side effects were well controlled with Benadryl and Viseral.
– Switching rooms from a private room to a shared room at the last-minute during the last 2 days while Jackson was getting sick sucked. Nothing like no advance notice – just move your stuff in the next 5 minutes…go. The shared room was small but it worked out in the end.

High Points:
– Jackson bounced back from each of the treatments by the following morning (except when I mistook a tummy ache during the night for more pain and gave him some extra medication which kept him drugged for most of the following morning once).
– Jackson was ready to play in the playroom most mornings and enjoyed playing until he had to get started again around noon or 1pm. He really enjoyed a lot of the toys such as the ride on rockets, fire-engines, and cars; play kitchens; and light sabers to name a few.
– The staff was great in trying to add to Jackson’s comfort during the treatment. The most entertaining part was the rhythmic humping of the bed to rock Jackson with yoga type moans.

Overall, it was a bad experience to watch Jackson in pain but he bounced back quickly and he didn’t have any lingering side effects like chemo.

Round 1 Done – Fuck you Cancer!

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Proton – Not an Option

Up to this point we have been exploring Jackson’s radiation therapy at MSKCC and CHOP.

CHOP offered proton radiation while MSKCC offered only traditional XRT.  In theory, proton radiation offers an advantage in certain situations as it can spare some healthy tissue from radiation vs. traditional XRT.  In Jackson’s case, we would like to spare as much healthly tissue as possible.

Today, it became clear that once again protocols are different and we have another tough decision – we are not just comparing technologies but radiation sites as well.

CHOP/COG’s protocol calls for radiating only the primary tumor site and MIBG avid sites post induction.  Since Jackson’s post induction scans showed no evidence of disease, CHOP would only radiate Jackson’s primary tumor bed.

MSKCC believes that Jackson will benefit from radiating not only the primary tumor bed but the lymph node tumor area in his chest.

Since we have decided to skip the transplant and veer from COG protocol, we decided that the MSKCC route made the most sense.

FUCK YOU CANCER!

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3F8 Round 1 – Here we Come

Back in NYC for a Sunday night check-in for Jackson’s first round of high-dose 3F8.

We arrived at the hospital around 7:30pm after a day of playing at home. We hung out in urgent care for around 2 hours while they got stuff setup on the floor for us. To pass the time, we had a horribly unhealthy meal of Johnny Rocket burgers and shakes combined with some pizza. After escaping child services for our horrendous meal choice we were escorted upstairs for the evening.

The toughest part of this evening is not knowing what to expect for the week except for pain and a “horrendous experience” per the doctors. Keeping our fingers and toes crossed that this is easier than we are expecting.

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New Gear for 3F8 and Beyond

Jackson had surgery at Yale to put in a med-a-port for his future treatment.   This is a much better option than Jackson’s previous broviac.  The port is all internal and as a result he can take baths, showers, and go in pools – live a normal 2 year old life.

The surgery was short and sweet and Jackson returned home to nap off some pain medications by the early afternoon.

 

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Decision Made – Pizza Time!

After much intense data scrutiny and soul-searching, we have decided to pursue Jackson’s treatment at Sloan.  We are skipping cheese steaks and transplants and heading to NYC for some pizza and 3F8!

From a purely risk-adjusted mathematical basis, MSKCC and CHOP are about equal.

  • MSKCC (2.5% * 30% EFS with no antibodies and no transplant) + (97.5% * 63% EFS with 3F8) = 62.2% risk adjusted EFS
  • CHOP (3.0% * 0% EFS with transplant death) + (97.0% * 63% EFS with transplant and ch14.18) = 61.1% risk adjusted EFS

However, this comes down to much more than math as there is only one statistic that matters in this case!  So why would we choose to pursue MSKCC when the COG and most institutions in the world believe stem cell transplant is beneficial?  Our rationale is that while Jackson has Stage IV neuroblastoma, he is in a rare subset that all of his doctors (except for MSKCC) ignore.  Most doctors are focused on fixing the problems of the larger group of a rare disease and not the very rare subset (~5 kids per year).  When the limited data on Jackson’s particular case is analyzed, we believe the risk/reward favors skipping the transplant.

  1. Most of the rationale for ASCT vs. no ASCT is from a study (CCG3891) which clearly shows an advantage for ASCT.  However, in sorting through the data on the precursor study  (1996 JCO – CCG321) the 4 year EFS percentages for patients with transplant and without is no different for all of the subsets in which Jackson falls: 1-2 years old (no difference in %), absent bone metastases (marginal difference in %), absent bone marrow metastases (no difference in %).  CCG3891 didn’t cut the data into comparable subsets and only 11 patients out of 434 Stage IV patients in the CCG3891 (2.5%) had a similar diagnosis to Jackson (Stage IV-N, distant lymph node involvement only) (3891 metastatic subsets). Under the COG treatment protocol, all patients in a particular staging are treated equally.  We believe Jackson’s case is different.  The counter arguement is that Jackson’s tumor is N-myc amplified and prior COG studies show that these types of patients, as a whole, benefit from transplant.
  2. The CCG3891 study was administered without antibodies.  Up until 2001, the only place antibodies were available was through MSKCC.  As part of the COG ANBL0032 study, the COG began testing the use of antibodies (all with transplants).  There has never been a test of transplant vs. no transplant with antibodies (except in Sloan’s internal data and in the 2005 German Cooperative Results (NB97 trial) which showed a difference in EFS but not OS).  Sloan’s internal data shows no benefit from using 3F8 with a stem cell transplant (MSKCC used stem cell transplants as part of their treatment from 1980-1989 and 1999-2003).  Slides from MSKCC’s 2007 presentation from ASCO show their survival curves for patients with and without stem cell transplant.  Sloan’s latest published survival statistics (2010 MSKCC EFS) has very similar (although not directly comparable) results to the latest COG data from ANBL0032 with antibodies.  The counter arguement is that Sloan’s data is unpublished, not from a randomized trial, and not segmented into subsets such as MYCN amplification.
  3. 3F8 without the transplant is a far less toxic process.  Eliminating the transplant removes the 3% risk of death from the transplant process (CCG3891 data actually had a 7% mortality rate) and lowers but doesn’t eliminate the risk that Jackson will become sterile from his treatment (there is already a 40-50% risk that he is sterile from the chemotherapy he has received so far).  The counter arguement is that there is a risk that Jackson develops early HAMA and won’t get enough antibodies to protect against MRD (less than 10% risk of developing HAMA if 3F8 is started within 90 days of chemotherapy) and he will still be exposed to additional chemotherapy if he develops HAMA (MSKCC uses rituximab and low dose cyclophosphamide to reduce HAMA).
  4. Relapse rates from neuroblastoma is 40-50%.  For patients who have undergone stem cell transplants in CCG3891, the time from relapse to death was quicker.  Some would argue that it’s due to the toxicity of the process and the body’s inability to fight from a weakened state (takes 6-12 months to fully recover) while others would argue its simply due to the fact that it’s a more aggressive cancer that can survive through the stem cell transplant.  For Jackson, his tumor is N-myc amplified and most relapses are seen within the first 12 months (at a time when his body would be weakened from a transplant) and we would rather fight from a position of strength (although we are praying we never have to face this).

For us – the risk of Jackson dying in the next month + becoming sterile is too high to pay for something that only “potentially” has value.  We’re headed to NYC – bring on the pizza!

We love you Jackson and pray that we have made the right decision!  FUCK YOU CANCER!

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No Evidence of Disease – FUCK YOU CANCER!

Today we received final confirmation from MSKCC that all of Jackson’s tests and scans came back negative.  He is officially cancer free!

 

 

FUCK YOU CANCER! 

 

 

 

We still have some big decisions to make this weekend on what Jackson’s treatment path will be but for now…it’s time to celebrate this milestone with our amazing little man!

We love you so much and couldn’t be more proud of you.

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Cheesesteaks or Pizza for a Month?

Big decisions need to be made this week – pursue a stem cell transplant at CHOP or skip it and pursue treatment at MSKCC.

CHOP – Cheesesteaks in Phili?

Today we setout to learn more about the CHOP option.  We packed up the car early at 7am (not early by Jackson’s new 5:30 wake up time) and headed down to Phili to meet with Steve Grupp to discuss plans for Jackson’s stem cell transplant.  Steve was very helpful and answered all of our questions.  We became more comfortable with the long term risks of stem cell transplant, however are still questioning whether the risks and toxicity of the process are worth the potential benefits.

Essentially a stem cell transplant is a means of delivering a high dose of chemotherapy to your body.  The doseage they give is so intense it destroys your bone marrow and you need to have your own stem cell transplanted back into you to restart the growth process.  It is a sledge hammer approach to eliminate any remaining minimal residual disease with the goal of eliminated relapes.  The upside is that it should in theory kill off any remaining neuroblastoma cells and it could potentially reduce secondary cancer risk as you rejuvinate your bone marrow with cells that haven’t been through as many toxic rounds of chemo (2-3% risk of developing leukemia from chemotherapy).  The COG points to the results of their CCG3891 study published in 1999 that shows a survival benefit from stem cell transplant vs. no stem cell transplant.

The downside is that 3% of patients die from complications during the transplant and nearly 100% are sterile after the process.

MSKCC – Pizza in NYC?

Memorial Sloan-Kettering takes a different approach from the rest of the world in that they don’t believe stem cell transplants are beneficial for neuroblastoma patients.  Sloan has been using their antibody 3F8 to treat minimal residual disease for many years (only available at MSKCC).  Sloan carried out stem cell transplants on neuroblastoma patients from 1980-1989 but after evaluating their own internal data, they determined the stem cell transplant didn’t add any additional benefit when given along with 3F8.  As a result, they eliminated it from their treatment protocol in 1989 and achieved good results.  After the COG published results of their CCG3891 study in 1999 which showed a clear advantage for stem cell transplants vs. no stem cell transplants, Sloan brought back stem cell transplants to make sure they didn’t miss anything.  After reviewing their internal data and again seeing no difference in survival rates, they again eliminated stem cell transplants from their treatment protocol in 2003.

The biggest risk to MSKCC is developing early HAMA and not being able to receive enough 3F8 to be effective (4 or more rounds found to be most effective).  HAMA or “human anti-mouse antibodies” are a result of the body developing antibodies to fight off 3F8, which is developed from the white blood cells of mice.  By using a variety of drugs, MSKCC believes it is a less than 10% risk of developing HAMA if 3F8 is started within 90 days of chemotherapy.

Decisions, decisions, decisions…this is not an easy decision!

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Going to CHOP…whoops…not so fast.

Jackson had his weekly clinic visit this morning to have his numbers checked.  While he was at clinic, his broviac tore while they were flushing the line.  This would have been no big deal if the hospital had a repair kit handy, but of course they did not have the part.  After spending the afternoon calling around for a repair part to no avail, the decision was made to admit Jackson for the evening and to remove his broviac first thing in the morning.

Not ideal, but his broviac has been acting funny for the past few weeks and having a working broviac for stem cell transplant will be important.

Since the timing of Jackson’s discharge is unclear, we have rescheduled our meeting at CHOP until Thursday.

Sorry about the unexpected evening in the hospital buddy!

 

 

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Scan Day

Today begins three days of tests and scans at Memorial Sloan-Kettering.  A brain MRI, CT scan, MIBG scan, bone marrow, and urine tests are all in the works.  Jackson has been doing great since this last round of chemo and we are keeping our fingers crossed for good results!

For the MIBG test, Jackson will be injected with a radioactive substance and then scanned on Friday.  Needless to say, Jackson will have to stay away from Meredith for awhile once he’s injected.  More time to chill with Daddy…that’s OK by me!

We will likely have some preliminary results by Friday, but final results won’t be back until next week.

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Done and Gone!

Around 5pm today we finished Jackson’s 5th and final round of induction chemotherapy!  ALL DONE!  WE’RE GOING HOME!

Jackson did extremently well during this round.  He kept up his energy and wasn’t overly nauseous throughout the process. His weight is up .1 kg over pre surgery levels though we expect he will lose a few tenths during the next week due to stomach issues related to chemo.   We are super happy about that.  Hoping to pack on some more pounds before stem cell transplant.  Since the end of Round 4 he’s he’s pretty much lost all of his hair again (hair, eye lashes, and eyebrows).  He’s now one smooth operator but still beyond handsome!  Meredith was able to stay with him during the entire stay while I was only able to spend Wed, Fri, and Sat nights at the hospital.

The highlight of this round for me was that the weather finally turned nice and we were able to get outside for some fresh air and Vitamin D from sunshine.  On both Saturday and Sunday, we took Jackson and his IV pole outside to the “healing garden” on the 7th floor of the hospital.  The healing garden is a nice rooftop deck with a walking path, fake stream, and many plants.  Jackson really enjoyed going outside, especially after he found he could throw rocks in the fountain.  Soon after he found that rocks made a nice big splash he decided to test out Meredith’s phone and his hat to compare splashes.  Luckily for Meredith, her Otterbox case saved her iphone.

Other highlights include Jackson practicing his drumming to the Fresh Beat Band on every available cup, plate, and bucket.  Who knew crayons made such good drum sticks?  He has also taken up playing the keyboard on various objects without keys.  Keyboard

However, the best part of the entire weekend was leaving.  When Meredith tried to take a picture on our way out and Jackson just held out his hand and said “No!”  This picture makes me chuckle and smile.

Jackson you are a one of a kind, your strength and good humor along this process continue to amaze me.  We love you so much!

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Round 5 – Last and Final Induction Round!

Round 5 began today – LAST AND FINAL ROUND OF INDUCTION CHEMO!  FUCK YOU CANCER!

Jackson’s number’s rebounded quicker than we expected after he was released from the hospital last Saturday, so today we are heading back to Yale for Jackson’s last and final round.

The day began early as I had to catch a 6:30am train to the city and Meredith and Jackson had to leave early to get to Yale by 9am to start hydrating.  I tried to take our normal group photo before heading out without waking up Jackson, but as you can see from the picture above, that was not so successful.

This round is a repeat of the drugs Jackson had during Round 3 (cisplatin and etoposide) which he handled well.

We are keeping our fingers crossed that things go as smoothly this time.

 

 

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Home Again

Jackson’s numbers are still not all the way back up, but his fever is gone and the doctors decided he was good enough to go! No more drumming at the hospital.  Although, Jackson is getting good!  Drumming

We are going home!  An awesome surprise as we thought we wouldn’t be headed home until Monday at the earliest. Will sure be nice to have atleast one weekend day at home!

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A Funeral and a Trip to the Hospital

Today was a day of two tales: my mom’s funeral and Jackson’s trip back to the hospital.

Jackson was enjoying being home since we were released from Sloan last Saturday.  However, this round has hit him really hard.  Most of the week he has been slow, hasn’t had much of an appetite, and wants to hang out on the couch and watch his iPad.  However, he wasn’t running a fever which means he gets to stay home.  Unfortunately, on Saturday afternoon his fever returned and Meredith and Jackson returned to Yale for yet another stay.  Jackson will have to stay until his fever is gone for 48 hours and his white blood cell count recovers.  Our house is starting to feel like a vacation spot.

While Jackson and Meredith were taking temperatures and heading back to Yale, I was attending my mother’s funeral.  The pastor did a nice job on the sermon (despite pronouncing our last name as “Colden”).  My father, sister, and I spoke and then two of my mother’s students parents and our neighbor Anne Nix also spoke.  It was a nice send off for my mom, she would have been happy.  I really appreciate everyone showing up for the funeral and viewing.  Your support during these difficult times truly means a lot.

Jackson, when you get older and read this, here’s a copy of the eulogy I wrote for my mom.  She was an amazing woman and I’m sad that you won’t get a chance to meet her when you are older.  However, you have one great guardian angel looking out for you!

Introduction – Linda

Thank you all for coming, it means a lot to us all.  My mom was not a fan of traditional funerals.  She didn’t like the black clothes and somber faces but instead thought it was better to celebrate life.  In fact, she instructed me at one point to wear red to her funeral.  I thought a red dress may be a bit much and the image of my brother in a red suit was a little frightening but we all managed to find a bit of red to wear today to celebrate.  So I encourage everyone to go ahead and remember and celebrate the years we got to spend with her as I am sure she is with us today for the celebration.  My mom enjoyed life and loved to travel, teach, shop, and spend time with the family.

Travel – Linda

Traveling and seeing new places was a big part of my mom’s life.  Many summers, our family would load up our van with suitcases and boxes of clothes, books, and food and head out for a three week trip across the US and Canada.  It was always quite the adventure with my dad at the wheel and my mom co-piloting armed with our AAA trip tickets and guide books but never any reservations.  Our family covered most of the US states and Canadian provinces on those trips.  It was fun to see many national parks along with nearly every waterslide, alpine slide, go-cart track, and fun hotel pool along the way.

After my brother and I left the house, my parents continued their trips.  They started traveling internationally and visited six European countries.  Her passion for travel lives on and will be passed on for generations.

Teaching – Linda

Teaching and helping children was another of my Mom’s passions in life.  She spent over 10 years in the Maryland public school system as a teacher and reading resource specialist before setting up her own private practice in 1972.

My mother never took the easy way as a tutor.  She spent countless hours rewriting lesson plans, tailoring them to the students to make sure they got the most out of it.  Through her work my mom truly made a positive and lasting impact on her students.

Shopping – Linda

In addition to traveling and teaching, my mom loved to shop as anyone who saw our closets, basement, or pantry (i.e. the bomb shelter) would know.  She loved a good bargain and taught us to be resourceful to find them.  It was not uncommon in our house to drive 30 minutes or more to find what we are looking for at some mall or store.

My mom wasn’t able to get out of the house on her shopping trips as much over the last few years but she still found enjoyment in the piles and piles of catalogs that would come to the house.

Luckily for my dad, my mom never learned to use a computer.  If she had discovered the internet and the endless shops online, my dad would have had to buy her a bigger house to store all of her bargains and purchases.

Family – Steve

While my mom was passionate about her traveling, teaching, and shopping, I believe her family was the essence and substance of her life.  Anyone who knew her soon learned her heart was centered on her husband, children, and grandchild.

Husband

My mother met my father Neale 53 years ago and they got married a few years later.  Over the past 48 years my mom has been an incredible part of my father’s life, not only as a loving and devoted wife, but also as his best friend.  Together they raised two children and saw a large part of the world.

I know my Dad will miss her deeply, but I know he will find solace in the countless good memories that they created and shared over the years.

Mother

As a mother, my mom did an amazing job raising two kids who she was very proud of.  We were always well cared for, well loved, and well fed.  We were told we could do anything we wanted with our lives and there were no bounds to our dreams and goals.

My mom had an amazing generous spirit.  Growing up, my mother had an incredible way of making holidays or birthdays truly special events.  She had a true passion and talent for planning our creative parties with games, cakes, and decorations that were memorable and far from ordinary.  She really enjoyed having family and friends around to share time with us whether it was at our house or on trips.

Over the past few days, I have received several emails and messages from many of my childhood friends (some I hadn’t spoken to in 20 years) expressing their condolences but remembering  my mom for her kindness and generosity and celebrating the fun times we all shared together over the years.

My mother’s generosity, creativity, and passion for enjoying time with others lives strongly in her children.

Grandmother

My mom was a truly proud grandmother.  Her first grandchild was my son, Jackson.  She was so proud of our little guy and his kind heart and energetic spirit.  His picture was the first and only picture allowed to hang on the refrigerator in her kitchen.  A true honor for those who knew my mom, as nothing was allowed to hang on refrigerator after she had the kitchen redone almost 20 years ago.

My mom always enjoyed hearing stories about Jackson’s childhood antics.  After hearing several stories of his wild man stunts such as diving in the pool or ocean without hesitation, she gave him the nickname “Fearless.”  Little did we all know at the time just how fitting that nickname would be.  I have watched my son fight his battle with Stage 4 cancer over the past few months with a grace, strength, courage, and determination that is a true reflection of my mom’s spirit and the nickname she gave him.

I know my mom is in a better place, proudly smiling and looking down over Jackson and putting in a few good words with the big man for him.  I know she will be a strong and proud guardian angel for Jackson and his brother throughout their lives.

Conclusion – Steve

My mom was an amazing woman.  Her kind heart and generous spirit will truly be missed.  The dignity and grace by which she sailed through life has left a wake of beauty across the many hearts she touched.  She will truly be an eternal influence on us all.

I know my mom is in a wonderful place, free from the suffering that has plagued her recently.  I truly believe she is smiling down on us all and enjoying this celebration of her life.  My mother would not miss a party.

Mom, may you rest in peace yet enjoy every minute of the wonders of eternal life, we love you, miss you, and look forward to seeing you and celebrating with you again.

I love you Mom.  You will be missed but never forgotten.

 

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Nice Seeing Everyone…Wish it was under better circumstances

Wow!  Today was overwhelming…crappy  but nice all rolled together.

Crappy because today was my mom’s viewing.  I know my mom is in a better place but I still can’t help feel its too damn early.  On a positive note, my mom looked good and she had a great turn out. She would have been happy. I’m just not happy that we had to have it though.

Nice because I saw a bunch of friends that I haven’t seen in a long time.  It was really nice of everyone to show up to pay their respects. However, it would have been a lot nicer to get together under better circumstances.  A big thanks to Tim, Brandon, Greer, Scott, Sara, Andrew, Kevin, Brian, and Yuji for showing up.  Your support during these tough times is much appreciated. Nice to know I have such a strong group of friends in my corner.  Thanks also to Meredith’s family (Tony, Pat, Scott, Ruth and Eddie) for coming.  Your support is also much appreciated.  I love you guys!

This year is a bunch of fucking bullshit!  Our family is just skipping April next year!

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When it Rains it Pours…RIP Mom

My mom passed away this morning.  What a couple of crappy weeks!

While we were at Sloan, I received an email from my Dad that my Mom was admitted to the hospital on Saturday April 14, the same time that Jackson was still on a ventilator in the ICU.  At the time, my Mom was having a cough, slurred speech, and trouble swallowing.  They suspected she had another stroke but CT scans did not show that she had a major one.

On Thursday April 19, my Mom developed breathing problems due to fluid in her lungs and they put her on a ventilator.  The fluid in the lungs was believed to be from the contrast medium used in the CT scan.  Plan was to wait to see if the kidney could recover on their own.  My sister returned to MD while I hung out with Meredith and Jackson at Sloan for Round 4 of chemo.

On Friday April 20, it became clear that my Mom’s quality of life would be severly impacted if and when she came off the breathing tube due to the stroke.  Things seemed stable though and I made plans to come down once I got Jackson settled at home.

Jackson returned home on Saturday at about 1 in the morning.  On Sunday, I decided to head down to MD Monday after Meredith went to her OB appointment and Jackson went to clinic.  However, after finally returning from clinic, it was late and things seemed stable so I decided to grab the first train out in the morning.  My sister called around 9:30pm that night and told me things were not going well at the hospital for my Mom.  However, they gave her some medication and she seemed to stabilize.

On Tuesday, I hopped aboard the 7:51 train to BWI out of Stamford.  The plan was to get in at 11:21 and meet my brother in law and drive over to the hospital.  A few hours into my ride, my sister called to tell me that the hospital had called around 9:30am and told my Dad that my mom was having trouble again.  My sister and Dad headed back to the hospital.  I said a few prayers and crossed my fingers that she would hold on until I arrived.  I arrived on time, Marty met me at the station, and 5 minutes into our drive my sister called me to tell me that my mother had passed.

I’m still upset that I didn’t get to be with her during her final time on earth, however I find some solace in the fact that she went peacefully and never regained conscious during her exit from the world.  I think my Mom decided to do one last favor for our family on her way out by not making us make the decision to take her off life support.  Her kindness and generosity truly lasted untl the end!

I will miss you mom!  Your kind heart and generous spirit will be missed!  I love you!  Rest in peace and put a few good words in with the big man for Jackson!

 

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Whoops You’re Not Done Yet…

You’re done…no just kidding.

Today was the last day of Jackson’s two week hospital stay and we were all looking forward to returning home.

Jackson finished his chemo infusion (or so we thought) in the afternoon and we all excitedly left the hospital to grab our things at the Ronald McDonald House and finally head home.  However after dragging our luggage to the lobby, checking out, and getting our car, my phone rang.  It was one of our nurses from Sloan.  She informed us that Jackson’s chemo pump had malfunctioned and there were still some drugs he had not received.  Change of plans…back to the hospital for a few more hours of infustion.  We were all pretty disappointed to have to return but atleast they caught the mistake and we weren’t too far away.

After arriving back at Sloan, we were assigned to a new room and we waited for the pharmacy to put together a new bag for Jackson’s leftover drugs.  While waiting, I went down to grab some dinner and on my way back I saw a Mister Softee truck.  Jackson had never had this fantastic ice cream so I grabbed a cone and headed back upstairs.  Jackson still didn’t have much an appetite at this point, but when he tasted Mister Softee that all changed.  He seemed to really enjoy his chocolate dipped top twist cone…one of my favorites as well.  A small consolation prize for having to return to the hospital.

Once Jackson finally started his drip, we all laid down for a few hours and waited.  Around 12:30am, the drugs were done and we hit the road, this time for real.  1:30am – we were home…FINALLY!

After a long stressful two weeks it is sure nice to have everyone back in our house!  We’re proud of you Jackson…you’re strength and courage are an inspiration to us all.

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Round 4 Begins

Only a week after surgery and Jackson is ready for Round 4 of chemo.  It’s still amazing to me that after all his little body has gone through that the doctors are OK with starting chemo so soon…but this is standard protocol and he has recovered nicely from surgery.

We started in the afternoon on Wednesday and should finish up in 72 hours – estimated time of departure Saturday afternoon.  Saturday can’t get here quick enough!

This round went as planned.  Some of the highlights from this round:

  • Going for walks, car rides, and wagon rides around the floor
  • Blowing and popping bubbles
  • Playing with blocks and legos in the bed and on the floor
  • Playing and drawing in the playroom and hospital room (Meredith and I arguing over who could draw a better Mickey Mouse)
  • Practicing drumming on plates and other products
  • Jackson finding a light saber in the playroom and attacking a doll house with it while yelling “Hi Yaah”
  • Friday night movie night and candy cart (Jackson was very excited that his favorite movie “Tangled” was playing on the TV
  • Patsy’s pizza party with contraband beer (Jackson’s face lit up when he saw me bring in the pizza box on Friday night.  He was saying “eatzy, eatzy” as soon as he saw the box.  Despite not having much of an appetite for the last few days, he managed to scarf down a few pieces)

One thing this experience has really taught me is to enjoy life’s little moments.  I love you Jackson, you continue to amaze me everyday!

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Moving on Up!

Well our stay in the step-down unit was shorter than expected.  Jackson did well overnight and they were able to take out his chest tube and remaining IVs this morning.  All that remains is his temp line.

The hospital needed the step-down room for another patient, so we were transferred to the standard hemonc floor.  We will take it…one step closer to home.

 

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Escape from Hell!

Well we were finally released from the Pediatric ICU and returned to Sloan.  I never thought I would be excited to return to a children’s cancer floor.  The death and depression in the ICU were just overwhelming for me (at least two children passed away in the ICU while we were there, not a fun experience).  I know the doctors in the ICU save more patients than they lose, but I couldn’t deal with the losses.  Much respect.

On a more uplifting topic, after we left our PICU room pictured above, we checked into our nice big room in the step-down unit at Sloan.  Jackson still has most of his tubes in but he is doing much better and finally off of breathing apparatuses.

Counting our blessings each day.  I love you little man!

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Waiting Game

We got transferred from Sloan’s operating room to NY Presbyterians Pediatric ICU for Jacksons recovery on Wednesday evening. So far its been a bumpy ride. Hopefully the rest of the journey will go a little smoother.  Atleast the view is good.

On Wednesday evening, the doctors told us they would likely take Jackson off the ventilator in the morning.

On Thursday, the doctors decided he looked a little swelled up and they would try in the afternoon. In the afternoon, they were still concerned and said wait until the morning. Jackson ran various breathing and blood gas tests during the night and everything came back great.

On Friday morning, Jackson got another “no-go” after the doctors reviewed his overnight x-ray which looked “wet”. Afternoon was the new target. Jackson was put on some more lasik, taken off sedatives and pain meds, and we poked and prodded to wake him up. After finally getting him awake, he was pissed off, in pain, and gagging on the tube. However, a new doctor showed up and decided that his stomach was still too swelled up. Another “no-go” and back on sedatives. Really frustrating experience that could have been avoided with better communication from the doctors – no mention of a concern regarding his stomach earlier.

So…on to Saturday. After some more lasik overnight, Jacksons breathing tube was finally removed in the morning. Throughout the day, he was put on a variety of equipment to help him breath. He was first put on a low flow support, then a high flow support, and finally a C-pap machine. Each machine was successively worse from Jackson’s perspective. The C-pap was described as putting your head out the window of a car going 60mph…clearly not fun. To make matters worse, Jackson had only a shared nurse at night who only spent 1.5 hours out of a 12 hour shift with Jackson, was a complete bitch, and unresponsive the remaining time. Needless to say, with a pissed off kid forced to wear a c-pap mask, we did not get much sleep!

So now its Sunday and we continue to wait. Jackson’s doing great, just taking awhile longer than anticipated.

 

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Off to NYC – Out Damn Tumor

Off to NYC for surgery and Round 4 of chemo

We’ve been waiting for today for awhile. The outcome has a lot of implications for Jackson’s future treatment (stem cell transplant or not / Sloan vs. CHOP).  On Monday and Tuesday, we got an updated CT scan and to met with the surgeon, Dr. Michael La Quaglia.

Today is Wednesday and its game time!

Unfortunately for us, today is the exact opposite of yesterday. Yesterday was an amazing “back to normal” day. After meeting with the surgical team in the morning, we checked into the Ronald McDonald House, went to a restaurant for lunch (Jackson’s appetite for chocolate shakes made a reappearance for the first time in months) and then took a walk to Central Park. Jackson loved the pond with the sailboats and ducks. He ran around yelling quack quack at the ducks while making flapping motions with his arms. After the park we came back to our room and had a little pizza and Tasty Delight. Jackson was back to his pre-diagnosis energy level, running and jumping all around the room. The highlight of the night for me was him running circles around me yelling his new phrase “I love you”. I couldn’t have asked for a better day.

Today, however was a different story. We woke up early for our 6am arrival at Sloan and hung out for 2 hours while they hydrated Jackson and prepped the room for surgery. Jackson knew something was up today and wasn’t very happy about not being able to have any juice or water before surgery. After watching some Muppets and coloring, it was time. Around 8:15, the anesthesiologist gave Jackson some sedatives which made him laugh and giggle and made me put on a surgical gown, hat, and foot covers so I could take Jackson to the OR. After gearing up, I picked up Jackson and the three of us walked down towards the OR. Meredith said her goodbyes and I continued down the hallway. Jackson thought my surgical hat and gown were funny and we laughed and giggled all the way to the OR.

Stepping foot into the OR finally made me realize how real today was. The bright, harsh light, small operating table with straps for Jacksons head and heated cushions to keep him warm, loads of medical gizmos and gadgets, and the large surgical team all with their serious game faces on finally woke me up to the harsh reality that this wasn’t just a walk in the park. This is a serious operation. We brought Jackson to Sloan because Dr. La Quaglia is the best neuroblastoma surgeon (and the most aggressive) in the world, but the gravity of it all didn’t really hit me until I laid Jackson down on the OR table and they gave him anesthesia and he drifted off to sleep. The anesthesiologist assured me that the drugs they gave Jackson in the preparation area would prevent Jackson from remembering any of this. I just wish they would have given me the same drugs! After Jackson was strapped in I was escorted out of the room and went to go meet back up with Meredith.

After gathering our belongings, we headed to the waiting area to begin the longest 8 hours of our lives. We were both miserable throughout the days, both trying to occupy our minds on other things. I don’t believe either one of us have been so scared in our lives.

Finally around 4:15, we got word that the surgery was over. We made our way to a consult room to meet with Dr La Quaglia. He told us that the surgery went great, he was able to remove all of the main tumor and all of the suspect lymph nodes he could see on the left side. We could not have asked for a better result. Dr La Quaglia is the man!

The only areas that the surgeon couldn’t address were some lymph nodes behind the heart and near the clavicle on the right side. Since the surgery was on the left abdominal cavity, there was just no way to get there. We will re address these spots with Dr Modak next week to figure out if we do a second surgery.

After meeting with the surgeon, Jackson was transferred via ambulance across the street from Sloan to NY Presbyterian for his stay in the pediatric ICU.

My first impression after seeing Jackson was that he was nearly as jacked up as I imagined he would be. In fact the only bruising was on his head from taking a header into the night stand during our Tuesday night pizza party in our room. All in all, he looked great despite the various tubes and wires hanging off him.

After getting Jackson settled into the PICU, I walked Meredith back to the Ronald McDonald house and returned back to the PICU to settle in for the night. I think I sat for a minute before passing out for the night.

Rough, long day for us all. We couldn’t be more proud of our little warrior. Jackson, you are one tough SOB, we love you so much.

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Wow! Who knew a kick in the nuts is what I needed?

I really appreciate Meredith letting me get away for a few day but next time I decide to take a 4 day trip, I’m not going to go somewhere they kick me in the nuts for 4 days…

I just spent the past couple days with my brothers from The Society working on strengthening my “Inner Game”. I was dreading going to this intensive as I knew we would be talking about some deep issues that I didn’t believe I would be ready to deal with given my mental and emotional state. We had a group of therapists from Pine Grove guiding us through this journey.

I fought the process for three days even telling the therapists that I was having trouble because I “needed to hold my shit together.” During day 3, I felt about as bad as the day they diagnosed Jackson with neuroblastoma. Cristo Darcy, one of the guys who has been helping Jackson, Meredith, and I since Day 1 of this journey told me that day that he had been “moving some stuff around” to try to get me to crack as it was a “safe place” and he thought I would benefit from it. Although I had complete and total trust in Cristo, I thought he was wrong and I needed to hold everything together to be strong for my family. I went to bed Saturday night pissed and confused why he would do that to me.

On Sunday, we went through some powerful guided imagery that brought us back in touch with our inner child and adolescent. It was a really powerful experience for me as I had learned throughout the weekend that many of my issues stem from my angry adolescent. One of my issues, among many, is that I react to stressful situations by internalizing and putting up walls.  After the guided imagery, we broke into small groups and we talked about our experiences. Our therapist Heather was great and pushed me to and straight past the breaking point. It was through this experience that I learned that I can be strong without walling off my emotions.  I now realize that reality is different from my long standing cognitive distortion.  Being strong does not mean being stoic.

I have no doubt that Jackson will survive but I finally realize that I’m entitled to feel emotions throughout this journey.  My pledge to myself, Meredith, and Jackson from this day forward is to be strong but open emotionally. I will be a better man, husband, and father as a result of this and many other lessons from the weekend. It was eye opening to me to see how childhood events have such powerful and long lasting impacts.

I’m so proud of Meredith and Jackson through this journey and together we will deliver nothing less than a mother fucking ass kicking to Jackson’s cancer!

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Saturday Night Disco Fever

Today was a fun day. You wouldn’t have known Jackson was here for chemo unless you saw him hooked up to the machine.

Jackson woke up this morning in a great mood. He had a decent appetite and we were able to get a little pancakes and juice into him. After he was done, he wanted to play with Ben (his ipad). We just bought him his own older generation ipad and set it up yesterday. So he was pretty excited to play with his own ipad full of kid movies and apps. However, he didn’t want just his ipad, he also wanted Mommy’s ipad and iphone. It was hilarious to watch him operating an ipad on each hand while also looking at a video playing on the iphone. After indulging in a morning of sensory overload he went down for a nap.

Jackson’s grand parents came to the hospital for the afternoon and I headed home to get some work done. I got back to the hospital around 5 and Jackson was still in a great mood, running around the floor with Tony chasing after him with his IV pole. Around 8, they took Jackson off of his IV and he was a free man for about an hour.

It was the best hour I have had in awhile. Jackson was hilarious, running and dancing around the room to Sesame Street and Tangled music. I haven’t seen him so happy and dancing for a long time. Meredith and I both loved it. Jackson you are an amazing little guy, we love you so much and couldn’t be more proud of you.

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Round 3

Headed off to Round 3 at Yale this morning. This time Jackson is getting two new drugs Etoposide and Cisplatin. The new drugs come with their own side effects and, as we found at the hospital, their own schedule – this round will go an extra day, so we will be here until Tuesday morning.

Jackson seems to be handling the new drugs just fine. We are keeping our fingers crossed that the Cisplatin targets just the tumor and doesn’t damage Jackson’s hearing. Many kids with neuroblastoma end up with high end hearing loss due to this and other platinum based chemo drugs.

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Harvest Time

Jackson’s counts were very good yesterday so the doctors decided to keep him in the hospital last night and then harvest his stem cells today.

Disappointing that we had to stay last night but atleast we don’t have to come back to the hospital until Round 3 of chemo starts next Friday.

CHOP wasn’t thrilled with us getting the stem cells harvested at Yale but it keeps Round 3 on schedule and Jacksons surgery on track. Logistically getting the cells to CHOP is difficult but they will work it out.

Jackson handled the procedure fairly well. We’re not sure how many cells they got today, but we are keeping our fingers crossed it’s plenty.

Finally home again tonight. Nice to have everyone back together!

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Today was a good day! 50% off…that’s a good deal!

Jackson has been running a fairly high fever all week. As a result, they decided to do a CT scan last night to make sure they didn’t see any infections in his chest and abdomen. The added bonus was a chance to check out what damage the chemo has been doing to Jackson’s tumor.

The doctors gave us the results from the CT scans this afternoon. No infections found and the chemo has reduced both the tumor on Jackson’s adrenal gland and on his lymph node by over 50%. The tumor is no longer on top of the kidney or obstructing the stomach.

One more round of chemo to shrink it some more and then surgery to remove it. Unclear if he will need a second surgery to remove the growth on the lymph node. We will reassess this issue with the doctors at Sloan.

The other great news is that Jackson’s white blood cell count has rebounded nicely. As a result, he will stay in the hospital tonight and have his stem cell harvest tomorrow. No need to come back to the hospital until next Friday when Round 3 of chemo will begin. Will be great to get a week at home!

Some solid cancer ass kicking progress is being made by our warrior! Today was a good day!

 

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Another Rocking Saturday Night at Yale

Well…just like clockwork, Jackson’s fever spiked back up today (approximately 7 days after the start of his last round of chemo).  As a result, we headed back to Yale.

We got checked in and had a pizza party in the ER holding room.  Jackson has determined the best way to eat pizza is to pick up each piece and have a small sample to make sure he is not missing anything by only eating one piece.  It’s pretty funny to watch.

After spreading pizza sauce around the ER and receiving several chuckles and comments on his “Fuck You Cancer” shirt, we headed up to the pediatric floor to settle in for the evening.  His fever started to go down after receiving some Tylenol and by 11:30pm Jackson was ready to party.

We have to stay at Yale until his fever goes away and his numbers recover – looking like Thursday at the earliest.

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Back to NYC

Went back to Sloan for another meeting with Dr. Modak. Firmed up Jackson’s surgery plans for mid April. But questions still remain about the plan for stem cell transplant and antibody treatment.

We will readdress the question after surgery and post induction chemo tests.

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All Done

Round 2 complete. Jackson handled this round like a champ. His energy level and appetite are still great. We are so proud of our tough little warrior. We are all happy to be home again.

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Off to Round 2

Off to Yale this morning to start Round 2 of chemo.  I love Jackson’s gangsta face in this picture!  What you looking at cancer?  Fuck you!

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Phili without the cheesesteaks

After several canceled appointments we finally made it down to The Children’s Hospital of Philadelphia and met with Dr. Rochelle Bagatell.  It was very informative meeting and she patiently answered all our questions for over two hours.  I think we are finally starting to develop a game plan.

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Haircut Day!

Go ahead cancer…try to make our hair fall out!  We beat you to it! 

Fuck you cancer! 

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Homeward Bound

Jackson and Meredith finally got released today after spending 5 nights in the luxurious pediatric ward.  Jackson’s fever is gone and his white blood count has rebounded nicely.  Unfortunately Jackson’s hair is starting to fall out due to the chemo…we’ll take care of that this weekend.

It’s great to have everyone back home (even if it’s only for a week).

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Midnight Express Back to Yale

Jackson’s numbers are at rock bottom today as it’s about a week after his first round of chemo. At this time, he’s very prone to infection due to the very low level of white blood cells. If his fever exceeds 100.5 degrees, the doctors have told us to bring him back to the hospital so they can keep an eye on him and administer antibiotics to get rid of any possible infections.

Well…throughout the day Jackson was running a low grade fever, so we figured we might be making a trip to Yale that evening.  Sure enough around 11:30pm, his fever started to spike and we headed to the hospital.  After getting several tests done in the ER, we headed up to the pediatrics floor and got settled in our room around 4am.  They are telling us we will be here until his fever is gone and his counts recover.

 

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New Fashion Accessories Arrived

Just received a batch of wristbands to show some support for Jackson. The message is simple…Cancer picked the wrong kid to mess with! Fuck You Cancer!

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Busting Out!

We’re out of here!  Round 1 complete.  Let’s go home!

 

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And so it begins…

Today we started round one of Jackson’s chemo at Yale.

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I wish I was back in NYC for some other reason

Today we visited Memorial Sloan-Kettering Cancer Center in New York City.  We met with Dr. Shakeel Modak who is on their neuroblastoma team.  It’s nice to finally talk to an expert on this disease.

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Neuro What?

Uuuummmm….excuse me.  What did you just say?  Neuroblastoma?  What is that?

Welcome to the world of pediatric cancer…

 

 

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