Benjamin’s story

My name is Liza (pronounced Leeza) and I’m Benjamin’s mother.  Since he was diagnosed with cancer at age 5 and ½ years I will be his voice in telling his story.  It’s a story of darkness –a darkness no child or parent of a child should have to endure – but it is also a story of light – night and day.

December 26, 2011

It had been a relaxing winter break for our family:  my husband, William, is an Internist, I teach at The University of Texas at Austin, and our three children:  twins Helena (8), Joshua, (8) and Benjamin (5).  It was Hanukkah and some friends on our street invited us to a big party at their home with blow up slides, jumping castles, lots of food, etc.  Everyone was having a good time playing and eating.  After going down a slide he came crying to us and we couldn’t figure out why (he didn’t fall).  He said his back hurt a lot. So, my husband walked him home and I stayed with the older children.  William came back, about 20 minutes later, telling me we had to take Benjamin to the ER – he wouldn’t calm down and he had vomited.

There is no need for me to get into all the details here – should I bother telling you how many times in the ER visit he was misdiagnosed?  If it weren’t for my husband – we would have been sent home.  Instead – he told the ER doctor she had to have a CT done of his back due to where his pain was localized.  They did.  His kidneys could not be seen.  After the first misdiagnosis the ‘correct’ one of cancer was made and we were moved to the oncology floor.

It’s hard to describe how my husband and I felt – we listened to all the doctors and nurses with constant tears coming down our eyes.  Never in the darkest fears of a parent’s life do you think your child will be diagnosed with cancer.  Oncology along with radiology decided the diagnoses was bilateral Wilms tumors of the kidneys – a pretty rare cancer.  No cancer was ‘seen’ anywhere else and his blood work was normal (so was his kidney function).  We trusted the oncology team and went with it – chemotherapy was to begin the next evening.

You see – Wilms Tumors are not biopsied – diagnosis is made with radiology, blood work, etc.  A medical decision that perhaps needs to be revisited.

Wilms Tumor Protocol

We pulled Benjamin out of his pre-school program.  He became an outpatient and the protocol required 3 chemo drugs, once/week, for 12 weeks and then surgery to remove what was left (no chemo after 12 weeks for surgery).  Since he had huge tumors on both of his kidneys we learned that a surgeon at St. Jude’s that was an expert in saving most of the kidneys when doing the surgery for Wilm’s tumors.  We contacted him – he shared the images with other doctors at St. Jude’s, they agreed to the bilateral Wilm’s diagnosis on both kidneys.  He agreed to the surgery.  We were so grateful because since this cancer is so rare – most surgeons are not experienced in it and often take out entire kidneys.

At 6 weeks post chemo Benjamin had another MRI of his kidney area – the chemotherapy had reduced to the tumors about 70%!  Amazing.  Benjamin lost some weight but unless it was the day after chemo he still ate and was holding his own.

William, Benjamin and myself left for St. Jude’s – for almost 3 weeks.  Leaving Helena and Joshua was so hard – we had never done that before.  My parents live a couple of blocks from us and took care of them.  We had so much hope.

The surgery went well and all that was left of the tumors were removed.  A few days later pathology came back:  NO CANCER SEEN AT ALL!  I’ve never seen surgeons smile.  “Rare” “Amazing” “rarely seen with Wilms.”  More red flags.

Benjamin’s recovery went well –but it was difficult.  Since this was major abdominal surgery – he had a catheter and didn’t have a bowel movement for 5 days – it was awful helping him through the first one.  However, he was getting better and we were released from the hospital to where we were staying at St. Jude’s.

It was Friday – last check-up with the surgeon and we would begin our journey back to our home.  Benjamin wasn’t calm in his sleep – he was moving a lot and moaning.  We just assumed it was because he was post surgery.  In the morning William noticed that Benjamin had developed a palsy.  A “Bell’s palsy” and his huge smile was only half – basically losing control of one side of his face.  We called immediately and St. Jude’s had a neurologist see Benjamin (oncology had already cleared him the day before).  He suggested we get an MRI done of the brain as soon as we got home.  However, as we sat there with the surgeon, oncologist, and neurologist, they all said Wilms doesn’t really go to the brain – we’ve never seen anything like this before, probably just Bell’s from the surgery trauma.  They were the experts, right?  It was St. Jude’s after all.

Return Home

It was awful.  Benjamin needed sunglasses all the time due to light sensitivity.  He started seeing double.  He didn’t sleep well.  We went to see his oncologist right away on Monday.  We told her he was not himself.  She did an exam.  Probably post surgery trauma.  Really?  No – he wasn’t having trauma after surgery.  MRI was scheduled.  His brain just lit up (not in the good way).  However, radiology called it some other non-cancer disease.  Right – because Wilms’ tumors do not travel to the brain.

This week was the worst week of my life.  Worst than 12/26 when we were told Benjamin had kidney cancer.  Each day Benjamin’s health got worse – he had so much pain in his head he couldn’t even describe it to us.  Cancer cells were attacking his CNS but the experts would not listen to us.  Benjamin started to lose function of his leg muscles and hands.  William, a physician, would leave messages with the oncology saying Benjamin was getting very sick and something was wrong with his brain.  Still, no return call – we’ll send him to a neurologist on Tuesday  (this was Thursday).  Benjamin’s eyes stopped moving (tracking), he was sweating like I’ve never seen before when sleeping…we told this to the experts and still, they didn’t listen.

Finally, my husband called the neurologist and said you are seeing Benjamin first thing Monday morning – no choice.  That finally led us to the hospital for a lumbar puncture.

Every minute Benjamin got worse.  We thought for certain we were going to lose him any minute.  My son’s personality changed – I almost didn’t know him anymore – that is how bad the pain was for him at 5 years of age.  These were the darkest of times for all of us.

Correct Diagnosis

Benjamin’s blood work told us nothing – other than a high (but not very much above normal) WBC it said nothing – doctors assumed WBC was a bit high due to recovering from the surgery.  So, we waited.  At least Benjamin felt better since he had medication for pain.

The oncologist finally made it into our room.  She had fear in her eyes – she had to tell us what was wrong with Benjamin.  She had to tell (even without the words) that the medical establishment and system really messed up with Benjamin.  The original diagnosis was incorrect.  He had unnecessary major surgery to a major organ.  He had the wrong chemotherapy protocol for 12 weeks.  And that she and the other experts didn’t listen to us – Benjamin’s voice – and that parent’s are always right.

Benjamin should not have had to suffer the way he did in order to get the right diagnosis.  Doctor’s need to learn from his case – his story should be told. 

Protocols save lives, yes, but sometimes doctors need to think ‘outside-the-box’ so to speak.

Burkitt’s Lymphoma

Benjamin was then correctly diagnosed with an extremely rare lymphoma in the Western world:  Burkitt’s lymphoma.  Only about 300 people (kids and adults) get it per year in the US.  However, this is no excuse for oncology – in Africa it is widespread among children and doctors such as Ian McGrath have spent their lives researching it and coming up with lifesaving protocols.  It’s common to be misdiagnosed at first by other types of physicians, but not oncology.  BL is the most aggressive human cancer – tumors can double in size in just 24 hours.

So, once the chemotherapy ended pre-surgery it went from his kidneys to his CNS (it’s common to enter the CNS).

Our first question was if it was treatable – yes, good success rate if treated properly.  Well, where does that leave Benjamin then?

Treatment Begins

Benjamin’s medical status was considered an emergency and treatment started right away.  Since it’s the most aggressive cancer – the treatment is extremely harsh and aggressive as well.  In fact, toxic death is a huge concern in this protocol.

I’m not going to get into the details too much – but we basically lived in the hospital non-stop for 4 months.  A patient on this protocol does not get a ‘break’ – as soon as platelets/WBC/ etc. are up to a certain number – you shock the body again with aggressive chemicals.  One biotech drug was used:  Rituxan.  Less side effects than chemotherapy, too.  Hoping that biotech research can deliver more for cancer patients.

I didn’t realize how ‘easy’ the Wilms protocol was in terms of side effects until Benjamin went through this regimen.  He lost 14 pounds and almost needed a feeding tube.  His mucositis was so bad that he would cry out for morphine.

How does a parent get that through their mind – that a now 6 year old is asking for morphine?

One week after the correct protocol – no more cancer was found in the CNS or in the rest of Benjamin’s body. 

These were dark days – he got very sick once with 104 fevers and no cause could be found.  The concern became a fungal infection which is often deadly in cancer patients.  So, treatment was started for that as well.

I can’t tell you how many times the nurses made major errors that could have killed Benjamin.  Thank goodness my husband is a physician, I’m a PhD who students health communication, and my father teaches pharmaceutics.  He taught all the hospital pharmacists – there was never an error in the medication that was sent to Benjamin.  We watched every move – we had learned our lesson well.

But the same oncology group that got it all wrong – made sure that Benjamin survived this treatment.

Benjamin also got neuropathy in his hands and feet.  He could barely walk from his hospital bed to the bathroom in his room.  He didn’t even want to ever play in the playroom.

I could write a book on what the different Disney and Pixar movies meant to Benjamin throughout treatment.  One he really loved was Stitch in Hawaii (Lilo and Stitch).  Last summer he asked, when he got better, if we could visit Hawaii to meet Stitch.  We told him yes.

There’s a line in Toy Story 3 that basically says – like all kids, Andy had to grow up, too.  That would always bring me to tears – with my time in the children’s hospital in the oncology unit I knew very well that not all kids grew up.

Treatment Ends

Benjamin finally finished the protocol – he was much better, but thin and weak.  It ended in October 2012.  But Benjamin persevered.  Benjamin is survivor.

As happy as we are to end this treatment – it begins to sink in that the harsh chemicals saved Benjamin’s life and they were no longer to be given to him.  Would the cancer come back?  How do you move forward?  How do you stop worrying that the cancer may come back?  We learned with BL that if it comes back – very few survive.

But, I believe in God and I believe in science.  That is why it is so important to raise money for research – so the scientists can do the work God intended them to do.

We had to move forward, to get Benjamin strong again, to make us a full family again.

Cancer is really hard on the siblings who do not have cancer, too.  They are scared and miss mom and dad.

So, I told myself to follow Benjamin’s attitude:  hey, I feel good again!  No more chemicals with bad effects!  Let’s eat!  Let’s play!  Let’s learn!

He did all that – we added extra calories to his food and gained 15 pounds!  (So did mom (um…more like 25) – I’m hoping by the time I do the Princess Half Marathon those come off or mostly off!)

I homeschooled him (he should have been in Kindergarten) and a teacher from the school district came two times per week to our home.  Physical therapy came to our home.  He thrived academically – he just loves to learn.  He loves math, science and reading.  His fine motor has taken longer to get better due to the neuropathy.

Summer 2013

We went to the beautiful islands of Hawaii for 23 days (not enough!).  Benjamin LOVES the ocean and beach.  It has helped him get better.  All 5 of us were able to spend all that time together:  learning to surf, playing, swimming, walking on the beach, going up volcanoes – witnessing glowing lava, fishing, and more.  We went to 3 islands and our last stop was Disney’s Aulani on Oahu.  You see – Stitch lives there.

We made a promise to bring Benjamin to meet Stitch.  So, I called the concierge at Aulani and gave him a very quick version of this story (trust me – this could be much longer) to see if we could have a private meeting with Stitch.  The concierge worked some Disney magic and although we couldn’t get him alone – when we arrived he made a call and Stitch greeted Benjamin and made him feel like a rock star.  Above that – each night a new present would be in our room waiting for Benjamin from Stitch.  This trip was not through Make-a-Wish – it was just me calling Aulani.

1st Grade!

Benjamin did get to attend the last 2 months of Kindergarten (his immunity was good enough and flu season was over).  He thrived socially – he had been in isolation for 15 months and we didn’t know what to expect.

He has now been in 1st grade for about 6 weeks.  He loves it – he loves being a kid.  I’ve learned so much from him.

I didn’t learn to appreciate my family more or life more after the cancer diagnosis – we already did.  We’ve always been a very close family who loves to travel and enjoy each other.  We know to enjoy each day and appreciate and love those around you.

But, I did learn from Benjamin that no matter what humans go through, most of us want to live and thrive.  That there is no reason to dwell on hard times and unhappiness.  That we should enjoy our healthy bodies and minds.  We learn, grow, and move forward.

Lingering Side Effects

Benjamin still has neuropathy and has to wear removable leg braces.  His muscles are still tight in his legs.  He still gets physical therapy each week.

But, everyday he gets stronger.  He doesn’t let it stop him.  He’s taking swimming lessons, tennis lessons, and basketball lessons.  He plays at recess.  He loves to ride his bike and use his scooter.

He doesn’t dwell on being uncomfortable or in pain – instead – he enjoys everyday.

Thank your for reading Benjamin’s ‘short’ cancer story.  He is my hero.  He chooses life each day.

I believe in God and I believe in science.

There is light after darkness – day after night.

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