Latest word from CHOP

The Children’s Hospital of Pennsylvania is struggling valiantly to help Jack Varty gain the strength he so desperately needs, in order to fulfill his dream of going home.   The original projected return date for Jack was January, but then they started wondering if it might be possible to get him home to California for Christmas!

Now, after four months of exhaustive chemotherapy and radiation, there is little left that is recognizable of Jack.   To use his Grandmother’s description, he is a merely  a sketch of the boy they all love.  They all just want to get him HOME, where they can all help him work his way back to the boy he once was!  Now,  doctors have had to install multiple feeding tubes to provide him with the nutrition he so desperately needs, to regain strength.  He is completely unable to digest and retain any food orally, as he vomits violently and repeatedly.

Now, Jack’s target return date has been pushed off to February, at best!  He frequently whimpers weakly about wanting to go home, but even that can’t sway the medical personnel’s decisions.  They know they must keep a tight hold on their hearts, for his own well being.

The family has arranged their holiday plans around Jack.  His paternal grandparents, his father, and his siblings will be heading to Florida, and staying in the grandparents’ home.  His mother and grandmother will stay at the Ronald McDonald house on CHOP’s campus.    His grandfather, and his great grandmother will join the rest of the family at the home of Jack’s aunt and uncle, in a nearby city.  Everyone is frantically trying to arrange to ‘celebrate’ the holidays, with as many family members as they possibly can.

Simply put, Jack is very VERY sick.  Until that changes, he’ll be staying put,  at this hospital that performs so many miracles,  for these children suffering from such  extremely rare diseases as leukodystrophy, as Jack has.

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Approaching normalcy

As an exit reward for ending a wonderful four day vacation driving down the Pacific coast of California, I have been battling extreme spasticity.  This was THE most painful pas de deus I have had in recent history!  Picture if you will the sensation of being poked with a burning hot rod in one butt cheek, just below your waist.  This continues over the period of a couple of hours, refusing to abate until I was able to locate some specific medication designed to alleviate such nerve pain.

Of course I have no one to blame but myself.  This same pain appeared last February, when visiting my brother in Florida.  The connection?  Walking on the beach, and not just walking:  STRIDING!  An old homily comes to mind:  fool me once, shame on you;  fool me twice, shame on ME!  I guess I never learn, or perhaps I only learn if the message suits me.  Either way, I have had an uncomfortable few weeks.

Now that December has moved in and begun to unpack, I am starting to plan.  Plan what?  THAT is the question that stumps me every time.  Ordinarily, I love to plan holiday festivities, but since it is just the two of us, I am missing the thrill and delight that usually accompanies this task.  Ho hum comes to mind, for which I really only have myself to blame.  We COULD have gotten ourselves in gear and planned a trip back to Canada for the holidays.  Evan’s new house always had that extra bedroom for us, so we could have booked tickets and be happy in the knowledge that a big family Christmas was awaiting us in Norwood!

Now however, life has moved on without us.  I suspect that Evan will be hosting Claire’s large family, and all his extra bedrooms will be booked.  Since our Green Card put a hold on our travel plans temporarily, grounding us for most of the early fall, we reconciled ourselves to staying put.  This hold was only removed at Thanksgiving, giving us insufficient time to get ourselves organized!

Recently the Health Department here announced that it made a boo-boo, in choosing the specific viruses that the annual flu shot would protect us from.  Now, our diligence in getting that vaccination on board was all for naught.  We might as well not have bothered, since the circulating virus that we now know is the big problem is not the one that the shot protects us from!  Given that traveling back to Canada would involve lengthy air travel in a recognized disease incubator, staying put seems ever so sensible.  My recently identified COPD doesn’t need much encouragement to land me with severe bronchitis or pneumonia, so White Christmases are out for us this year!

Looking back on our experience with SNOW, and I mean S N O W, in our past years, I really wonder why THIS time of year makes us long for the stuff!

Pete n the big dump.jpg

At what point did this become desirable??

 

 

 

Christmas on the horizon

Christmas on the horizon

The shining highlight of 2017 was the birth of our second granddaughter, Hattie Anna Henshaw, on July 5th, at the Peterborough General Hospital.  We have been warned that she is the grand finale of their family, but as someone wise once said, ‘never say never’.

By all accounts, Hattie is an ‘easy’ baby, compared to her big sister, Willa.  She has dark curly hair, and big dark eyes, unlike her blue eyed blonde sister.  Since Willa is in school all day now, Hattie is the center of attention for her mom, dad, and other grandma.  This makes me really feel the dreadful distance separating us!

Luckily, we were on hand for Hattie’s arrival, which coincided her parents taking possession of their first purchased home.  They bought a large four bedroom 3 bath home in the little village of Norwood, that had been designed and built by the home’s vendor.  It has some quirky features, like the hand hewn spiral staircase, between the first and second floors.  Luckily, there is a standard staircase outside, but it will lose its appeal shortly, as winter settles in. All of the bedrooms have custom built in drawers in the closets, giving them more storage than houses twice the size!

Ryan and Carolyn bought their own first home this year as well.  With stainless steel appliances and granite counters, it is a stylish unit!  They are now happily settled in their  trendy condo, near downtown Ottawa, where both work.  They plan to spend the holidays with her family, in Kincardine Ontario, but have told us that they have booked tickets to come down here in February next year.

We seriously discussed heading back up to Evan’s for Hattie’s first Christmas, but inevitably decided to stay here.  We’ve been hearing a lot of warnings on TV that the flu shots we all had this year are proving to be MUCH less effective than in previous years.   I at least would like to avoid planes during the flu season.  With my propensity to develop severe bronchitis, the risk is too great!  Glenn unfortunately has NO choice about plane travel, since he has been scheduled to go to China late next month for two weeks.  He will also have to go back in February or March.  He is currently in charge of two different projects, so I guess that is why he is so heavily booked.

This is why I’m so glad we have a dog:  Lacey likes to bark when she hears anything  outside.  Even though she isn’t a huge dog at 50 pounds, she sure sounds intimidating!

 

 

Return on investment?

An important meeting is scheduled for Wednesday afternoon.  Glenn is geared up for battle, but I’m really hoping that it doesn’t come down to that.

This meeting has been in the works for a while.   It has taken several months to find a time that suits both us and Karim, the park manager.  We are hoping to accomplish several tasks,  from addressing the exorbitant level of our monthly rent, to determining our ability to sell our unit when we eventually retire.

In the year that we have lived here, we have learned that the owner of the park, the corporation,  is determined to expunge all of the units built previous to 1990, and replace them with brand spanking new ones!   This would enable the owner to justify substantially raising the level of the monthly rents.  The owner is actually a hedge fund manager, whose only mandate is to generate income for his investors.  They are not even remotely interested in dealing with the residents here;   they are just the source of income for this firm.

Our unit was built in 1981.  Of the approximately seven hundred units here, ours is one of about three dozen ‘garage units’.  These units are NOT mobile homes, they are ‘manufactured homes’.  Mobiles have the ability to have wheels underneath them, so that they can be moved to a different location.  Ours has a garage attached to it, so it cannot be  moved in the same way as the others.

When we bought our home last summer, this determination of extermination of all units older than twenty-five years old didn’t exist!   We chose this unit because it was a perfect size for us:  twelve hundred square feet.  Also, the kitchen and laundry had been updated and remodeled, with lots of built-ins in the cupboards.  Corian counter tops and sink was the clincher, after having dealt with ceramic tile counters in our rental in Santa Clara!

We viewed dozens of units in several different parks, some as large as 2000 square feet!  Somehow, this little unit had touched our hearts,  even though the two bathrooms desperately need to be completely overhauled.

We had originally figured on using our Christmas break to start the planning and shopping to rehab at least one of the bathrooms.  A neighbor told me about a wonderful local firm that specializes in kitchens and bathrooms, so I was very much looking forward to doing some exploratory shopping.  But is there any point in sinking thousands of dollars into fixing up these rooms, if we won’t see a return on our investment?

Since Glenn is on the board of directors for the park, we often get the inside track on a lot of issues.  Sometimes this is advantageous, but sometimes it just increases your frustration! We know first hand that the park is blocking the sales of the older units, thus forcing owners to sell to the park itself.   Then, the old unit is pulled out, and replaced with a new one!  Then, this new unit is paid for by a   consortium of the park itself, and a mobile home vending firm.  Then, the owner of the old unit receives the minimal price that the park offered, and moves on.

Obviously, if we had known that this practice was commonplace,  we wouldn’t have chosen this unit OR this park!  Hindsight is twenty-twenty and all that, but this is gratingly irritating.  I know that I just have to put it out of my mind until Wednesday, when hopefully we’ll get reassurance from Karim.

 

While I was trolling around the internet trying to learn as much as I could about Jack’s diagnosis, I discovered some Canadian doctors that are exploring this disease as well! These folks are located in Montreal Quebec, and work out of McGill University.  I sent them a note last week, hoping that they might have some information that would benefit Jack’s family, never expecting to hear back from them.

Much to my surprise, I got a very timely response from them!  This was my note:

Jack was recently referred to CHOP by Stanford University in California.  He is a delightful six year old boy, that is only recently post cholecystectomy.  He is currently receiving chemotherapy at CHOP.  When I saw that a related study was taking place at McGill, I decided to bring him to your attention.   

I am a Canadian citizen living in the US under an H4 visa since my husband was hired by Apple.  Since I cannot be employed while here, I devote my self to various volunteer positions.  This is how I came to hear bout Jack.  His 90 year old great grandmother is a fellow volunteer at the Santa Clara Seniors Center.  All she could recall from the diagnosis he had just received was that it was something destroying the white matter of his brain!  Well, we put that shard of information together with his recent gall bladder surgery into my phone, and BANG!  Up came Leukodystrophy!

I’m sure that Jack is getting excellent treatment at CHOP, but with such a disheartening prognosis on the table, absolutely every opportunity is worth exploring.

This was the note that was sent in response:

From: Genevieve Bernard
Sent: October 25, 2017 23:34
To: Leann Henshaw
Cc: Dr Bernard research lab
Subject: Re: leukodystrophy patient Jack Varty
Importance: High

Dear Mrs Henshaw,

I am sorry to read that Jack is sick.

Please accept my most sincere apologies for the delay responding.

We work very closely with CHOP in our research project.

What is Jack’s diagnosis?

I have cced my research assistant, Luan Tran, so that he send you more information about our research program.

Please let me know if we can be of help.

Dr. Bernard

Geneviève Bernard MD, MSc, FRCPc
Associate Professor, McGill University
Pediatric Neurologist & Clinician-Scientist
Montreal Children’s Hospital
genevieve.bernard@mcgill.ca
________________

Laboratory:
Research Institute of the McGill University Health Centre
1001 boul Décarie
Site Glen Pavilion E / Block E
CHHD Mail Drop Point #EM03211 (cubicle C)
Montréal, QC H4A 3J1
Canada
Attention:  Pediatric Neurodegenerative Laboratory
Dr. Geneviève Bernard
Lab #ES1413; Office #EM02224

Tel:514-412-4400 ext.:23380

Fax:514-9334149
To make a donation to the laboratory: https://fondationduchildren.com/collecte/laboratoire-dre-genevi-bernard/

Clinic:
Department of Genetics
Montreal Children’s Hospital (Glen)
1001 Decarie Blvd, Bloc A043140
Montreal Qc H4A 3J1
Tél: 514-412-4427
Fax:514-412-4296

 

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From: Genevieve Bernard <genevieve.bernard@mcgill.ca>

Subject: Re: leukodystrophy patient Jack Varty

Date: October 25, 2017 at 8:34:07 PM PDT

To: Leann Henshaw <swmbo4@me.com>

Cc: Dr Bernard research lab <bernardlab.neuropediatrics@mcgill.ca>

Dear Mrs Henshaw,

I am sorry to read that Jack is sick.

Please accept my most sincere apologies for the delay responding.

We work very closely with CHOP in our research project.

What is Jack’s diagnosis?

I have cced my research assistant, Luan Tran, so that he send you more information about our research program.

Please let me know if we can be of help.

Best wishes,

Dr. Bernard

Geneviève Bernard MD, MSc, FRCPc

Associate Professor, McGill University

Pediatric Neurologist & Clinician-Scientist

Montreal Children’s Hospital

genevieve.bernard@mcgill.ca

________________

Laboratory:

Research Institute of the McGill University Health Centre

1001 boul Décarie

Site Glen Pavilion E / Block E

CHHD Mail Drop Point #EM03211 (cubicle C)

Montréal, QC H4A 3J1

Canada

Attention:  Pediatric Neurodegenerative Laboratory

Dr. Geneviève Bernard

Lab #ES1413; Office #EM02224

Tel:514-412-4400 ext.:23380

Fax:514-9334149

To make a donation to the laboratory: https://fondationduchildren.com/collecte/laboratoire-dre-genevi-bernard/

Clinic:

Department of Genetics

Montreal Children’s Hospital (Glen)

1001 Decarie Blvd, Bloc A043140

Montreal Qc H4A 3J1

Tél: 514-412-4427

Fax:514-412-4296

 

Well, WOW!  I have passed this information on to my friend Joan, who will be speaking with her daughter, granddaughter and grandson this evening.  They call nightly, to keep everyone on this end of the family up to date on how things are progressing for Jack.

Since he has always been a small child, the chemo has made him a mere sketch of himself.  He has some very bad days, coping with the nausea that sneaks through the medications designed to remediate the misery.

Personally, I’m going to be anxious to hear of the connection between Jack’s parents and the doctors in Montreal.  As Dr Bernard mentioned, there is already a cooperative relationship between the two facilities, but more information is always better than less.

It is too bad that Jack will likely never know exactly how many people will actually be working towards helping him fight this battle.  It would be so nice to tell him how well known he is becoming as his disease is studied, poked and prodded!

Subject to interpretation

Just got an email from a Canadian friend, complaining that it was 30 degrees.  Hubby responded by telling him that it is 30 degrees here as well.  That demonstrates the necessity of knowing the between Celsius and Fahrenheit.  Canada got metric-ated about twenty years ago.  So they speak Celsius when talking about weather.  Essentially this means that 30 degrees is bloody cold THERE.  But here in the land of perpetual summertime, 30 degrees is bloody hot.

ONE week til Halloween.  Poor kids will be donning 100% hot and sticky costumes, and dragging a parent that couldn’t come up with a good reason not to,  through the neighborhood.  Feigning fear and horror at the fourth Frankenstein they’ve seen so far is part of the job description. Next comes the entire herd of My Little Ponies, each decked out in the color of their favorite pony.  Your smile is causing a facial cramp, made worse by the tired old soundtrack of cackling witches and groaning un-dead played annually.

SO glad when this festive occasion is over, especially the next morning, when all those tasty treats are HALF PRICE!  Guilt can be so much easier to assuage when it is CHEAP.

*************

Six year old Jack is currently receiving his sister’s bone marrow, now that his own immune system has been wiped out.  The chemo therapy has done its job.  This means that this brave six year old is now in complete isolation in this ward in the hospital in Philadelphia, thousands of miles from his home, and most of his family!  He has been resident there since early September, while the doctors poke, prod, X-ray, and scan, every way they can gain more information on Jack and his rare disease.  He has seen his mother and father, his sister and his uncle, but NONE of the rest of his family.  He is kept heavily medicated to mitigate the chemo’s heavy toll of nausea and misery.

His great grandmother misses him desperately, but understands that this is a necessary phase in his treatment.  She has had but a few words of conversation with him over the phone.  Other than saying that he should be able to return home in January, there has been little intermediate testing results shared with the extended family.  I know this because I have been serving as the medical terms interpreter for Joan. despite Jack’s mother being an RN.  I’m also Joan’s shoulder to cry on, probably due to the her daughter (the nurse’s) absence.

This family has endured SO much, and their ordeal is far from over.  Jack’s treatment regimen won’t be finished until early in the new year.  The effect on this disease is still unknown, and the future has yet to be written for Jack, AND his family.

 

 

Treatment has begun

Not surprisingly, the intense chemotherapy is making Jack very, very sick.  I’m not sure which chemo drugs are being used on him specifically, but I do recall reading that Carboplatin was one of his cocktail of nasty.  I recall that twenty years ago, when my mom was being treated for small cell lung cancer, that was one of the drugs prescribed to her.  I do recall her being horribly nauseous, but I believe that this is true of many chemo drugs.

In Jack’s case, the chemo is being used to completely wipe out his existing immune system, since this is where his disease lies!  It is an autoimmune disease, where his own immune system is killing its ‘host’, in other words, his own body.  During the this process, he will be in an isolation unit in the hospital in Philadelphia.  The only people allowed access to him will be medical personnel, and his parents.  Both of his parents have to stay  with him throughout his treatment.

After his own immune system has been completely destroyed, some donated immune cells from his 8 year old sister will be implanted in his body.  She actually stepped up and volunteered to do this, even before the hospital discussed this with the family!  When the marrow is harvested, Elizabeth will have to stay for three days, in order to be sure that sufficient marrow was retrieved.

Meanwhile, my friend Joan continues her countdown.  She has been tracking how long it has been since she saw ‘little Jack’, counting the days since he left for CHOP.  She takes comfort in knowing that he is in THE BEST hospital for treating this sort of disease.  He is being treated by the very best experts, world renowned doctors and nurses, physiotherapists and psychologists.  The family has been told that if all goes well, they can expect to take Jack home in early January.

Until his treatment finally started last week, she fretted that the damage was continuing to destroy the white matter in his brain.  It was understandable, she said, that they wouldn’t want to start a treatment that might be too hard on his body, but at the same time, this allowed disease to continue unchecked.

Luckily, Jack is away from the dangers of the toxic smoke from the epic wildfires in northern California.  We have had two days this past week where the air pollution here was equivalent to that in Beijing, China!  The local news advised that anyone with breathing issues should be wearing an industrial air mask, NOT the ones you can normally buy in a drugstore.  Schools in the northerly area were closed, and many still are.

Over two hundred thousand acres of land have burned, 57000 homes, and forty known deaths.   Many high schools further down into the safe zone, as well as community halls and churches, and being used as accommodation for the thousands of people that are now homeless.  A few local employers, like Apple and Microsoft, and offering to TRIPLE the donations to various organizations from staff, thus making a ten dollar donation worth thirty dollars!  This includes organizations like various local food banks, the Salvation Army, the Red Cross, and Best Friends animal charity.

Meanwhile, the fires still burn, and are only about 15% contained.