Northern California is now just one gigantic campfire

News flash:  8 major fires are now burning just north of San Francisco.  Napa is surrounded by walls of flame.  In the past 48 hours 36 souls have perished.  385 people are missing, from seniors to teens, to entire families.

There are BREAKING NEWS alerts on the TV every few hours, as the winds push the flames first one way, then the other.  Mandatory evacuation orders are issued at the breaking points, as the roaring infernos break through the next orchard.

When we left the house this morning, the smoke was readily visible, giving everything an ethereal sheer curtain.  The scent was not unpleasant, hinting of the initiating of home fireplaces in the chill of early autumn.  By this afternoon, however, the haze was more like a fog, easily justifying a health warning.

Schools throughout the bay area are closed due to extremely poor air quality.  It has NEVER been this bad before, the current level of pollution is extremely hazardous.  The level of particulate in the air is so toxic, it could potentially be lethal to those people with compromised breathing.  If you have to be outside, you are advised to wear masks or breathing apparatus.

There is an eerie orange glow on the distant horizon, visible from the city of San Francisco.  Our neighborhoods here in Sunnyvale are getting together to gather clothes, linens, towels, toys, and pet supplies, among many other items.

As of 11pm Wednesday, NONE of the fires is even close to being contained.  As the fires continue to grow, they are quickly merging, and creating bigger, and BIGGER FIRES.

 

 

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Slowly, but surely, Jack’s problems are being identified

Jack has been at CHOP (Children’s Hospital of Philadelphia) for two weeks now.  His mother has remained with him, while his father has returned home.  His siblings have had further testing at Stanford, closer to home.  So far, the news is mixed:  eight year old Elizabeth, Jack’s older sister does NOT have the faulty genes that he has.  Thankfully, she will never be facing he same fate as Jack!

Cameron is four years old, and has ONE set of the defective genes that cause this disease. While he will never succumb to this horrifying disease, he will have to be completely candid with any woman he wants to marry.  She will need to have this testing to ensure that they could not doom their child to this!

Leukodystrophies are a group of rare, genetic disorders that affect the white matter of the brain. The word leukodystrophy comes from leuko, which means white, and dystrophy, which means imperfect growth. Leukodystrophies are characterized by this abnormal growth of white matter in the brain. Specifically, these diseases damage the brain’s myelin sheath, which acts as an insulator around nerve fibers in the brain and spinal cord.

Damage to the myelin sheath slows down or blocks messages between the brain and the rest of the body and can cause problems with:

  • Movement
  • Speaking
  • Vision
  • Hearing
  • Mental and physical development

Most leukodystrophies are neuro-degenerative. This means that in time, if left untreated, the diseases progress, causing more destruction to the white matter and worsening symptoms.

Jack has yet to begin the recommended chemotherapy and radiation that will hopefully halt the progress of this disease.  The reason for the delay is the hesitancy of the doctors,  they are not in agreement concerning Jack’s ability to withstand this rigorous ordeal! Once they are all in agreement, the treatment can begin, but meanwhile the delay is potentially causing him to slip further.

Next weekend, a change in the family guard will see Mommy coming back home, as soon as Daddy and sister Elizabeth arrive in Philadelphia.  They will be able to stay at the nearby Ronald McDonald House, but will be spending their days with Jack.  There IS some concern that Jack won’t remember his sister, but hopefully that will resolve in short order.

Fortunately, Grandma and Grandpa are able to put their lives on hold in order to stay at the family home, and keep things on an even keel.

My dear friend Joan is insisting on keeping her Thursday shifts at the Seniors Gym with me.  She said that this is the ONLY part of her routine that is keeping her sane, preventing her from being sunk in worry and depression.  She especially appreciates being able to talk about Jack’s situation with me, and getting more information about this  disease via the internet.  I purchased some small Hallowe’en decorations for his dad to take to him next weekend, which was more for Joan.  A little bit of ‘normal’ is a treat.

 

 

Update on Jack

This normally bright six year old boy doesn’t even realize that his life has changed.  He has never asked why he isn’t going to school every day, like his siblings.  He hasn’t even asked about why he and both of his parents have been staying at this strange new hospital in Philadelphia, called CHOP, far away from friends and family.  He just goes along, in a bit of a daze, and does as he is told.  This institution is THE place to go if your child is facing a serious neurological immune system disorder.

This alone is a huge change.  ‘Normal’ six year olds question everything, and definitely do not live life in a passive fog.  Upon returning home, his great grandmother met him at the door.  He stood, staring at her, for a few tense moments, and finally spoke.

“Hello Susu,” calling her by the name that all of her grandkids call her.

A huge sigh of relief was her response, as she reached for him, and wrapped him in her one armed embrace.  He soon wandered off…..

His parents, clearly exhausted and throbbing with stress, told Joan that Jack would return to Philadelphia next Sunday, just a few short days away.  Mom would accompany him, while Dad remains at home, continuing his job and trying to keep his family strong.  Jack would begin an arduous schedule of chemotherapy and radiation that would continue for the next four months.  His mother would stay with him, throughout the whole treatment.  He would be in an isolation unit, since his immune system would be quickly demolished by the toxic drugs and concurrent radiation.  Only his mother, and the medical personnel would be admitted.

Yesterday, Jack’s siblings were taken to Stanford Hospital here, for MRI scans.  Both Cameron and Elizabeth are at equal risk developing this disease.  Bloodwork looking for  the potential existence of the genes that cause this disease was also done.  Results on all of the tests will be presented to the family next week.

Little Elizabeth is the only one of them that frequently asks,

“Is Jack going to die?”

You can imagine the horror that this situation is causing.  This disease is potentially deadly.  I don’t know what the specific odds are, but the literature certainly doesn’t present an even remotely encouraging picture.  Even the ‘treatment’ itself can be lethal, depending on the patient’s current state of health.  When you consider the ages of the three children in this case, you can see why the doctors don’t freely offer opinions.  Jack is six, Cameron is 4, and Elizabeth is 8.  Small children, facing a nightmare of which they aren’t even yet aware.

 

Leukoencephalopathy/leukodystrophy

I really think that these long leggy terms puts my minuscule whines and complaints on the FAR back burner!

One of my very dear friends, Joan, age 89,  at the Santa Clara Seniors Center has just learned that one of her much adored great grandchildren is suffering from this strange disease.  Jack is six years old, and had just started grade one, when everything started to fall apart.  Now, he is currently at a hospital in Philadelphia that specializes in diseases of the brain, with his parents.  He will be starting the prescribed treatment next week, which is strong chemotherapy, and radiation, to completely obliterate his faulty immune system.

He started having puzzling symptoms, and was initially seen by his family doctor, who immediately knew she was out of her depth.  Stanford Hospital houses our local neurological specialists, so that was his next step, where several scans were conducted, including an MRI.  This showed that the white matter in his brain was being ‘eaten away’.   Doctors there suspected leukoencephalopathy,  which is commonly called “white matter destroyer “.  Hmmm… sounds like an autoimmune disease, where one’s own immune system attacks the brain by destroying the myelin protecting the nerves, or ‘wires’.

By doing this ASAP chemo and radiation, they hope to save his life.  Otherwise, he would definitely die within a short while, less than a few years.  While he is having this treatment, he will only have contact with his parents, which is why they have to stay with him in Philadelphia during this time.  He will be in isolation, since the two severe treatments will irradiate his immune system, leaving him open to any germs or viruses that others might introduce.

He has four brothers and sisters at home, but numerous family members have stepped up to help out while Mom and Dad are dealing with this crisis.  There is NO guarantee that this will save his life, but it’s his best chance.  If not for this severe treatment, they can only sit and watch him die.

At some point, the other children in his family will be tested for the presence of this gene.   This disease happens when BOTH parents carry the gene that causes it.

Since I normally see Joan on Thursday for our 3 hour shift at the Seniors Center, I hope to get more feedback then.  Jack and his parents were due to return home for a very short visit  last weekend, so she will have had a first hand opportunity to see how everyone is doing.  Since the doctors at both Stanford and Philadelphia feel that Jack has a fast evolving form of this disease, the destruction may become very evident, even after a short absence!

 

Long Overdue

THIS is a long overdue note.  Yes, I feel guilty, and really  cannot even offer up and excuse.  Life has been hectic for the past few months, what with moves, babies, weddings, and… uh, I forget.

Unfortunately, my phone fell out of my purse while we were in the rental car in Ontario, Canada.  More specifically, while we were in Toronto.  My official excuse is closely linked to the disastrous floods caused by the hurricane that hit Texas, namely, Hurricane Harvey.  It hit Texas and caused mayhem while we were wrapping up our visit to Canada.  So of course, we spent the last couple of evenings that we were there pinned to CNN, watching this historic storm irrevocably scar people’s lives.

We were so overwhelmed by this devastation that simple safeguards like remembering to charge our phones every night completely slipped our minds.  IF we had remembered to do this, I would have noticed the absence of my beloved phone  BEFORE getting on the plane to fly home.  As it was, I was completely unaware of the loss until we were seated on the plane, and it came time to put the phone on “airplane mode”.  Hopping off the plane to go and search for the phone wasn’t an option, so I resolved myself to figuring this out when we got home.  Luckily, the car rental company quickly notified us of their discovery, and its return was arranged via FedEx.

I didn’t realize until the following Thursday how very desperately I needed that little device.  I had an appointment with my neurologist at Stanford Neuroscience Center.  Glenn asked me if I needed him to drive me, immediately after informing me that he had a day of wall-to-wall meetings already scheduled.  Not to worry I assured him, I’ve driven there many times.  All I needed to do was follow my usual route via El Camino Real.  No problem.

Everything would have gone along just fine, if it wasn’t for the construction being done on the roads around the Santa Clara Seniors Center.  I would have been just fine, left to my own devices, but a construction worker had other plans.  He waved me down, and gestured frantically for me to turn left, instead of continuing on in the other direction.  Being the obedient soul that I am, I did as I was told.  No problem, I just need to find my way back to El Camino..

If it had been just THAT simple, all would have been well.  I however am very easily thrown off when it comes to my sense of direction, or complete lack thereof.  I spent the next hour-and-a-half, trying desperately to find my way back to El Camino.  By time I was able to do this, I was over an hour past my appointment time.  Frustrated doesn’t begin to describe it.  When finally I found the elusive road, I heaved a huge sigh of relief, and continued on my way.

When I finally arrived at 230pm, for my 1pm appointment, I checked in at the desk.  I decided to try to try to curry some sympathy by explaining my predicament, hoping that it would help my case.  Since this whole building was for patients with neurological diseases, surely MS was a legitimate excuse for my tardiness.

Apparently NOT.  I was told that I was far too late, and would have to reschedule for a later date.  Oh yes, and that later date would have to be in October, since there were no openings until then.  I tried to explain to the clerk that this was my biannual check, and I definitely did have issues to discuss with the doctor.  She was sorry, but…

I came home, and immediately texted my friend Karen.  Somehow, she was fortunate enough to have been assigned to an awesome nurse that was available to speak with when needed.  I never did meet the nurse to whom I was assigned!  Karen immediately offered to text her nurse, and endeavor to get me an appointment next week, when she is also scheduled.  I got a phone call from her nurse shortly thereafter, advising me of my new appointment.  It just goes to show that you need to know who to talk to if things aren’t going your way.

I had NO idea that I was so dependent on my phone for finding my way around.  I’ve known for quite a while that I have trouble with directions.  But then add to that my flaky memory, and my anything BUT instant recall, and you can begin to see why I am no longer able to rock my own world.  I worry constantly about any potential loss of cognitive ability.

Honestly, I really feel these losses, especially those that pertain to my linguistic memory.  From the days of our doing “It pays to increase your word power” in the monthly Readers Digest, my Dad’s voice is with me always.  And much to the chagrin of my kids, I have also inherited his insistence on proper grammar and exacting pronunciation.  The problem now is knowing when it is safe to speak up, and when it’s just not appropriate.  My apologies to my email correspondents for my avaricious need to edit!

 

 

Can hardly wait!

FINALLY, everything is working out for us.    Our cat sitter just called, and is confirmed for next week, so they will be cuddled and spoiled, to their delight

Lacey is booked for Woof, the local kennel we’ve started to use.  That way we can go to their website and look in on her, if she’s in the ‘common room’, aka the play room, for similarly sized dogs.

Our plane tickets are purchased, and a rental car is reserved at the Toronto airport.  Andaz, a hotel in the Byward market in downtown Ottawa is reserved for Tuesday and Wednesday nights.  Glenn has points at this hotel, from his frequent stays in China.

Evan has been alerted to our late arrival at his home in Norwood on Monday night, so we can come in through the unlocked basement door, and settle in to the guest room without waking everyone.  That is of course assuming Frank, their giant Aussie Shepherd doesn’t announce us!

Tuesday morning, we’ll be up in good time, in order to get to Kanata in  time for an afternoon meet up with Gail, and a trip to Mark Cochrane’s vet clinic.  I will have to resist taking any of the wee kittens residing at his clinic, since I’m no longer in that particular ‘line of work’!  That evening, we hope to meet up with our old gang of buddies to do some catching up,  sharing of pictures, and general chit chat.  It will go by far too quickly, and we’ll be bidding farewell again.  The inevitable questions about returning permanently when he retires will loom, but we really can’t answer that yet.  Glenn has been told that Apple is never insistent on retiring their senior staffers, no matter their chronological age!  Right now, he is having too much FUN to think about such things, and his Green Card is finally on the horizon.

Wednesday morning we are hoping that Diane and family are feeling better, as her phone call late today advised me of the stomach flu they are all battling!  Our original plans were to visit them at noon, to share the birthday cake that I was told she was making for me! If, by the time we arrive, they are still too ill to visit, we’ll likely just drive around and see old neighborhoods.

Later in the afternoon, we are to visit Ryan and Carolyn’s new townhouse in the Centerpoint neighborhood, and from there we would take them out for dinner.

Thursday morning will see us heading for Windsor, to Anna’s apartment.  We will take the time to rest up a bit, since this whirlwind week will be challenging.

Later on Friday, we expect to see Evan and his ladies arrive at Anna’s.  This will be Hattie’s first meeting with her Great Grandma, so you can imagine the photos that will be snapped on this occasion!  Willa will be a star as well, since she is now five years old, and very capable of carrying on a conversation.  I purchased a couple of small Shopkins dolls for her, so Anna can present her with those.  I also have several easy reader books for her, since she is now learning to read, and is most anxious to show her prowess at every opportunity.

Saturday morning, Anna made appointments for the two of us to get our hair and make up done professionally.  I really appreciate this, since my shaky hands don’t do much of a job these days!  Cheryl has warned us that Carly’s wedding is going to be quite a formal affair, so we’re going prepared.  Glenn has a new navy blazer and silver grey dress pants,  while I have several dressy outfits to choose from.  I’ll likely bring a couple of dresses to choose from, as well as white dress pants and a sheer tunic blouse.  It’s always nice to have options!

I guess this means that tomorrow is for our wild whirlwind packing adventures.  And all the resultant decisions:  choosing clothes to do for seven days, for BOTH of us.  I need to  select three pairs of capris/crops/trousers for me (out of my dozen pairs from Chico and Talbot, that I just can’t resist when a new color group comes out), a dress and shoes for the wedding, a couple pair of casual shoes for the rest of the time.  For Glenn, life is easier, since he’ll wear his casual pants and shirts that he wears to work all the time, except the wedding.  Luckily, we determined he/needed new dressy clothes last week, so he’s well equipped.

Currently, I have FOUR pair of pants splashed across my bed, and a dozen tops.  It’s DECISION TIME.  This is where my issues complicate my life!  For every extra pair of pants that I add, my confusion increases exponentially.  I have talked with other MS patients about this, and I am assured that it is embarrassingly common.  It comes under the heading of ‘executive functions’.  I think this means that I’m not the boss of anything.

Time is being whittled away, and we’re still not packed.  I guess that I’ll consult Glenn, although that can be risky.  His theory is that green is green, not forest, not sage, not willow,   just GREEN!   I risk greeting friends and family wearing a turquoise top with sage green trousers, but I can always just say that things look different in the strong California sun.