Just Where the Hell is Idaho Springs?

Maya:  I know where we are!

We are in the middle of nowhere.   Sometimes, Maya says the most insightful thing you can imagine.  She did not say that about Idaho Springs.  She said that somewhere in the middle of Nebraska.

We’ve made some good time since we started our journey Wednesday evening.   We tried to high tail it out west.  We had some difficulties as well.  Just outside Chicago, there was a tear in the muffler.  We were embarking on a cross country journey with a broken muffler?  I don’t think so.  In a non descript gas station, I met a very nice man, Lee,  who helped us out.  He took me to the automotive centre three times to figure out a way to fix my problem.  For your help, I thank you Lee.  Thank you also for your prayer for Maya.  That was very touching.

The drive was long… yesterday, we spent the day at the Rocky mountain National park.  And late at night, we decided to push on.  I thought if we can cross the Rockies at night, we’d be in a good position to make it to Las Vegas.

Well,  one of the rear tire blew up and the friction from the tire compromised the break line. I think.  Luckily… I guess I should count on my blessings here really…  we were lucky enough not to be on the I-70.    Matter of fact, I just stopped on the shoulder to check the RV over, as Indira smelled something burning.  And also luckily, we found a towing company at midnight to take us to Idaho Spring, which turned out to be only 3 km from where we were stuck.  So, we need to check on the tire and more importantly, the brake system.

We are here for the day.  I think the best thing to do is to just enjoy this beautiful area.

Although I was very frustrated last night, I think we’re OK. I think we are more than OK. Everyone is OK, Maya’s been just a great trooper, Indira’s been helpful.  The boys?  Well… they are teen agers… well, Actually, Jonathan is 20 today.  Here’s to Jonathan on a brand new decade!

Time to get the bikes out and enjoy a beautiful day in the Rockies.  There are worse way to spend your day!

Video’s are coming of Silver Lake Dune buggy rides…

Sunny days from Grand Rapids, MI

We are safely in Grand Rapids, MI.  We left last night around 9 PM and was in the Renucci house, early morning.  RV takes longer than the car, but the drive itself was uneventful.

This morning, we went to check in and started on the new part of Maya’s treatment.  We are very hopeful about the DFMO study.  The high level summary could be stated as follows:

  • very low side effects.  Of course, there are side effects, but the known side effects are based on adult trial, and at the dose level which is 30 times what we are getting.  (30 mg for adults to 1 mg for a child)  Even so, the side effects are mild, compared to chemo. For example, we are talking about diahrea and fever like symptoms and temporary hearing loss.  Based on the dose that we are getting, there are no recorded case of any of the side effects presenting.
  • It has been shown to “stabilize” the disease.  Some children have been on it for years.   Two year observation did not show any remarkable side effects.
  • It’s also been observed that tumor activities decreased from PET scans.  PET shows biological activities and it’s been observed that  tumor activities stop showing up in PET.
  • It’s oral.  3 pills in the morning and 3 pills at night.
  • HVA and VMA levels have been known to normalize.
  • Energy level in the cancerous cells have been known to decrease.  (ATP activities in the cancer cell)

We feel good about DFMO. If it does what  we’d like to see, it is entirely possible for Maya to be on this drug indefinitely.  If nothing else, we are talking about cancer as a chronic disease.   We like the word chronic much better than, say “quality of life”.  Please say a prayer for our little Maya and other neuroblastoma children, in particular, our good friend Jake Schaeffer.

Because of the fact that DFMO study came in the middle of our planning, we needed to be in Grand Rapids, MI on Aug 2nd and Aug 16th.  The only way  I could accommodate this is to fly in from where ever we were.  I was thinking from San Fran, on Aug 2nd and may be Achorage, on Aug 16th.  Since these clinic days are for blood work and a physical, Dr Sholler is making a referal to Dr Robertson(?) in San Diego and someone in Anchorage that may be part of COG hospital.  So, we for sure won’t need to fly in from San Fran and possibly we won’t need to fly from Anchorage to GRR as well.  That would be completely awesome!!!  Thank you Dr. Sholler!!!

We’re going to spend the day around Grand Rapids tomorrow, and on Saturday morning, Indira will fly back home and we’ll be pushing to Las Vegas.  We’ll be picking up my mother to a trip to Utah and Grand Canyon.  So, Jonathan, my little nephew will spend his 20th birthday in Las Vegas, on July 24th.  There will be 100 dollar bill and all the hope of turning that into millions! 🙂

High lights of the day include:

  • There is a slushy machine in the children’s clinic!  Awesome.
  • Grand Rapids hospitals are world class.  200,000 population and the hospital here are simply jaw dropping.  It’s really something else. Very blessed to be here.
  • Downtown core is… 4 – 5 blocks.  Had solidly decent meal at an Asian Restaurant.  I mean pretty darn good.
  • There are rabbits everywhere on the hospital grounds.  We all were surprised with that.  We looked for them, chased them and enjoyed them.

Oh, it’s been overcast here in GRR all day with intermitten showers.  And as a results, it’s been rather  cool and quite bearable.  It feels like we’re starting our trip on a good footing!

Stay Tuned folks!

Maine Camp

The Laughing Heart

your life is your life.

don?t let it be clubbed into dank submission.

be on the watch.

there are ways out.

there is a light somewhere.

it may not be much light but it beats the darkness.

be on the watch.

the gods will offer you chances.

know them.

take them.

you can?t beat death but you can beat death in life, sometimes.

and the more often you learn to do it, the more light there will be.

your life is your life. know it while you have it.

you are marvelous.

the gods wait to delight in you.

Charles Bukowski

 

Gods delight in Maya.  I wonder if the gods delight in me, but certainly it wouldn’t be for lack of trying on my part. Trying to pull a plan like this together takes a lot of effort.  Off and on, it’s taken a year to get it together.  And pulling all the little strings together can be challenging. Sometimes you end up with knots.

Maya has to be in Grand Rapids, MI for a new study for the drug called DFMO. It’s not a drug that will make cancer go away, but for some children, it seems to hold the disease in check.  Equally important is that it has very little side effects.  The hope is, first, it keeps the cancer in check with “quality of life” – which is a term I’ve come to despise – and second, allow us to enjoy the summer.

Because we need to be in Grand Rapids in mid July, we thought that we could head out to east coast first.  That would switch the last leg of the trip to the start, and still allow us to all the places which we wanted to go.  No biggy… Matter of fact, when Visa cancelled my card for theft prevention, I had the card sent to Moncton NB.

Except… we decided to go to Maine.  No credit card. OK. No biggy…

As the days rolled by, the strings were being brought in.  Some we can do on the trip.  Others needed to be done.  One of the big things was a trailer.  So, I bought one.  6×12″ trailer.  Got a good deal and thought yes, we can do this. Measured the bike and yes… it will just fit!  All good.  Except, the back end eats up 2″ on either side. The bike,with the sidecar does not fit.

On Thursday evening at midnight, we took off.  Jonathan, Taylor, Maya and I got in and started to drive.  I rode the bike and Janathan being 19, drove the RV. He told me later that he was scared stiff driving the RV for the first while, with a 12 foot trailer hitched on the back.

Just outside Kingston, we stopped for some quick shuteye.  And from 7 AM to around 1 PM, the three men tried to figure out how we can get the BMW in the trailer.  We take the side car off.  And so we did.  Even so, it took some doing maneuvering things around.  And the side car weighs a ton.  Imagine an old cast iron bathtub. That’s what the sidecar is, with a wheel. There were quite abit of swearing, let’s just say. And even when we tied everything down,things shift around.

We drove towards Maine for the rest of the day.  Crossing vermont is always nice.  I was wishing for Jonathan to be on his bike riding the mountains, but that would have meant pulling the bike out.  That was not going to happen.  Tomorrow, when we get to Maine, we can pull the bike out.  We stopped at a rest area and crashed. I think it was around 2:30 AM.

Thursday

Once again, the first course of action was to pull everything out of the trailer. Everything shifted and we needed to fix things and tie them down.  It took a good few hours again.  There were good amount of swearing again. By the time we got going, it was late.  It looks like Maine is so close… but, we just can’t seem to make any head way.

As sun set, we found our selves in Lebanon.  We’ve been making painfully little advances.  And everyone was tired so, we stopped for dinner.  Luckily for us, there was a firework display and Maya seemed to have enjoyed it.

When we got back to the RV, we checked on the bikes. It had shifted.  We could not drive on as it was.  It would damage the bikes. So, here we are, in a non descript town,aside from it’s name, in a non descript parking lot, were pulling everything out again.  In the trailer, there is a little platform in the front.  If we could only tear the platform down…  When satisfied that things were reasonably tied down again, we headed out. It was 2 AM.

We drove for another couple of hours or so and again, stopped at the rest area to get some shut eye.  Only 250 km from our initial destination. There is a part of me that wants to push on, but we’re all tired.  Better to be safe than sorry, especially with the trailer hitched in the back.

Friday

We finally arrived at our destination.  There is a sense of relief as well as a sense of wanting to get to the beach, relax and let Maya and the rest of the family relax.  But, the state park would not allow us to put the RV in the parking lot.  Too big.  sigh… it’s been like that.  Well I tell myself, we’re all here, in one piece and aside from lack of sleep and some minor damages, all is good.  So, we went to another beach and spent the day doing the things which we originally set out to do.

We found an RV park that could accomodate a 30″ RV plus the trailer. We were all so tired that we hooked up quickly and passed out.  I hadn’t eaten much in two days… Mostly that is due to the fact that I could not find anything decent to eat.

Saturday

We got up relatively early, around 9 AM. And for the next 4 hours, the boys attended to the trailer.  First of all, pull everything out.  Secondly, we needed to get the side car pushed in as far as it will go. That meant that for all intent  and purpose, we had to stand the sidecar up.  I somehow went out to a gas station and found a couple of round hooks that I could mount on the front 2×4’s.  Now, I did bring my drill, but not the drill bits.  One of those things that I shrugged off, as I did not think I would need them. By asking around, we found a drill and the drill bits to make the appropriate holes in the front.  The two top hooks(albeit, it shouldn’t be used as a weight bearing hooks) were used to hoist up the side car. The bottom two were used to pull the butt end in. In addition, the 2×4’s pieces were used as as a stop, just in case the sidecar bounced around.

Seemed like we were driving forever. But finally we got to Acadia national park at 9:52. The office closed at 10 PM, so we were very lucky to have made it.  Also, there was only one camp ground available, which we took gratefully.

Sunday

I had to get up at 7:30 to get to the front office.  The office opens at 8 AM, and I wanted to see if there are any cancellation.  We were lucky to have found that the camp site was open today as well.  So, I asked for it.  Of course, without a visa and fresh out of cash, the nice park ranger lady would not hold the spot.  So, got on to “master jon jon’s bike” and headed back into the Bar Harbor to get some more money. Made it to a bank and I went out to fill Jon’s bike with gas.  I did not want to take the chance of running out. That’s when I realized that I did not have my bank card with me.  Good grief!!!  Headed back to the bank and of course, the card is no where to be found.

With the way that things have been going, I was sure that I would make it back only to find that the spot was taken.  It was not.  With that, I was able to relax a bit.  We went to the sandy beach.  It was nice to finally relax a bit.  The water was bitterly cold.  The boys had a contest to see who can stay in the water the longest.  I won, apparently because I have more body fat.  Oh well…  When the nuclear winter comes, I’ll be ok?

Monday

One thing I really wanted to show Maya was the intertidal pools.  I don’t know why, but exploring the world with Maya is something I found delightful.  I think Maya feels the same way.  We went to the Sea Wall park.  There are a handful of photo’shere.  Initially, Maya did not like the idea of wading through the seaweed field.  However between the “No way” and “Oh look”, Maya had a splendid time.  She did not want to leave and only agreed to go back to town with the promise of coming back.

For me, the entire trip was really high lighted by these few hours exploring the world with Maya and Taylor.  We all had a marvelous time, finding sea urchins, crabs, hermit crabs, star fish, three lobsters, sea snails etc.  This is what I wanted to give Maya and Taylor.  Engage the world that is yours!  Respect it.  Love it.  Delight in it, just as gods may delight in us. If the trip has been tiring for me, physically and mentally, these few hours made it worth while.  And I would like this summer to be filled with this sense of wonder.  When will be have the opportunity to engage our world like we have just then?  If I can do nothing much for my kids,  this I can do and gladly faciliate the opportunities.

 

 

Tuesday

Long drive home… 17 hours and 1200 km..

Observations

  • We got to Maine and back safely.  The RV is not new.  It’s been around.   We threw the book at it really.  It held 5  people in it, as well as towing a trailer full of bikes.  And on top of that, we climbed the mountains of Vermont.  On our way back, in the back roads, the incline was so steep that the RV could only muster 10 km / hour.  Had it blown up, it would have been a rough day.  It got us there and back safely.  So, it treated us well.
  • Much of the problem came by the way of the trailer.  Remember, remember, remember always to measure twice and cut once.  It caused a lot of sweat and toil.  It put scratches on both my bike and Jonathan’s new bike.  It’s like that on the road sometimes.  But it’s an experience that means a lot in many ways.  I guess the first is the fact that stuff happens on road.  You have to roll with it.  Secondly, nothing was really damaged.  There are significan scratches on my BMW.  While it saddens me to see it scratched, it also brings me closer to her.  She has again, treated me right.  And again, I am grateful to her.   Had the gas tank punctured, as it could have, that would have made for a really bad day.  We did not have that day!  I dented the trailer from trying to make a very tight turn.  But, nothing seriously got damaged.  Had it been damaged to a point where it was not road worthy, it could have made for a worse day.  That also did not happen.
  • I am very proud of my boys.  Both Jonathan and Taylor had the whips put to them.  It’s not easy to pull out all the gear in the middle of nowhere, at 1 AM in the morning, on many occassions.  Yes, there were grumbling.  Yes, there were tense moments.  But I would like to think that these events cemented our relationships in ways not seen before.  If there is a hope from my side, it is that I have shown them not to give up easily.  Engage the problem and do your best.  These hardships were paid for with love.
  • I am equally proud of Maya.  She always amazes me.  When you leave her to her own devises, you see an emergence of a child that engages her environment fully.  She lives like she’s dying.  Whether it is digging a hole in the sand, or whether it’s being couped up in an RV for days on end, she is happy to engage her life.  What more could any parent ask for? We only need to let Maya be Maya.
  • If there is one thing that stood out about our trip, it is this;  It’s not the events that define your life. It’s how you react to the events that define it. The circumstances were challenging. It was my mistake. It brought on the hardships.  But we all made it.  We know a thing or two more.  And there were moments that couldn’t be bought any other way.  For that, I am thankful.  Universe has a funny way of unrolling itself.  And she was kind to us.