Tiny Bubbles

Today is Oct 18th, 2012.  It’s been over 2 1/2 years since I had an unreserved bath with Maya.  Well… let’s call it that.  Such a small thing, really.  But, in the past two and a half years, the CVL was always the focus of any washing.  For that matter, any type of water activity.  We had to have it dry and clean.  If it did get wet, it meant having to sterilize the area and changing the dressing around the entry point where the catheter snaked up into Maya’s jugular vein.

On multiple occassions the entry area did get infected, puss filled and angry looking.  Each of these occassions meant a trip to the clinic or to the emergency for antibiotics, cultures and during the early days, even a pokey from the peripheral line (from a vein in the hand or arm).

With the CVL out, the area has scabbed over nicely.  For now, there is no maintenance.  That means no flushing the line.  No heparinizing the line (Keeps the line from clotting).  And no dressing change.  And yes to an unreserved bath.  It’s OK to get the area wet even if Maya does not feel comfortable with the idea yet.

It was not a “victory”.  It was not a battle won or lost.  It was just a bath.  And today, it was simply wonderful to sit in the tub with my daughter who has all the right to want the water level right to the brim of the tub.  I took great pleasure in our bath.  Maya did too.

Knife’s Edge

Our initial foray into the land of MDS and Vidaza has been so far, dull, boring, tiring etc.  I had somehow thought that being back in the land of chemo was going to be fraught with terror, unexpected complications and dealing with a sicker child.  The over active imagination has been exactly that.  What I am finding is that each little incidents are taken with an additional degree of gravitas.  When Maya spiked a fever last week, we were admitted. The sudden activity surrounding Maya had woken us up from a certain slumber that we’ve been enjoying.  That was to be no more.

Since we’ve been admitted, it’s been rather quiet.  Maya was her usual self doing what she does best; being her awesome self, enjoying her environment and passing time the best possible way she can.  There are the late mornings as the result of late nights, late breakfasts, late lunches and late dinners. There are play time with Ooch folks and other volunteers.  And there are T.V shows that can never be missed along with reading books and forever yakking away at both mom and dad.  Daddy… do this, no do that… “Oh for love the of god!!!”

As Maya has been doing so well, we event got to go home on a day pass this past Friday.  There was a birthday party that must be attended, and she did.  Maya has fabulous nails from the spa party, which she absolutely loves;  Indeed, Maya is her mothers daughter.    She had a great time at the birthday party and we casually strolled back to Sick kids around 10 PM.

Again today we took a day pass to go home.  Maya played with her most excellent next door neighbor friends. Around 4:30 PM, Maya looked tired and asked for a warm blanket.  By 6 PM, she was spiking a fever and we decided to bring her back to sick kids.  Given the blood issues, fever is no small matter.  At sick kids, her fever was running at 39.6 degrees.  Her vitals were quickly taken, blood tests off to the lab.  Heart rate, 136, BP 88 over 56.  Not great, but not too bad either.  I guess we have also become more sensitive to Maya’s condition as well.  Before MDS, we would wait and watch Maya.  No more.

The natural tendency is to play things safe.  The resident wanted to do a peripheral blood test (a poke), which is a standard procedure.  We always try to fight this, as if we don’t hurt Maya enough. But, we also understand the rationale for it. Namely they don’t want to mistaken the line infection (a small possibility) for the cause of her fever and not treat the (potential other) cause of the fever.  Hence the peripheral blood test.

After the initial observation, it was decided that Maya should get the antibiotics to run.  The blood tests were starting to come back. White cell count is really elevated, at 16.  But with MDS, this means little.  But yes, let’s get the antibiotics going, and no, not Vancomycin.  Sepsis is no small matter.

We are worried.  The physician on duty along with the on call resident is worried. And then, suddenly Maya’s fever dropped and she became wide awake, fully responsive and back to her normal self around 9:30 – 10 PM.

Now, at 11 PM, she’s eating a pizza and her and I had a little conversation about… evolution.  She is watching Max and Ruby.  It almost, almost feels like all the anxiety never happened.  Things are back to the old boring, dull normal.  Our normal.  In another hour or two, I will put on my stern father voice and tell her to go to bed.  She will then feign great disappointment, but will lie down and within minutes, she’ll be off to sleep.

I, on the other hand will continue to think about what this all means. Most likely a reaction to Vidaza which is known to cause fever.  Who can say?  For now, I am being summond to watch Max and Ruby.  She is, as I type this, telling me that “You always want to sleep with me, now you have a chance and you’re on the computer.”… The dude abides.  But we tread ever so lightly on the edge that could take us sliding down the knife’s edge called MDS.

[Update Oct 15, 2012]

Since last night, all things have been back to our norm.  She has not been febrile and she’s been pretty darn good. This afternoon, few things transpired that needed additional note.

Firstly, Maya’s culture came back and she grew a bug.  It’s gram positive bacteria. The type of the bug is not yet know.  However, the nurse practitioner specified that gram positive bacteria is very common on skin, so it’s likely that Maya’s line was infected when her CVL broke.  OK.  The antibiotic of choice is …. wait for it…. Vancomycin!  NP felt strongly that we should start on Vanco right away.  We do not want to take any chances!  OK… we get it.  However, Maya does not react very well to Vancomycin.

  • Maya get’s red man syndrome.
  • Maya gets neuropathic pain.
  • Vancomycin (may) cause additional hearing loss

The nurse practitioner felt that we should include the fellow in this discussion so we don’t have to have two separate discussions.  OK.  Some two hours later, Sick kids Social worker came by and I vented on her.  My arguments were:

  • If the NP felt that the situation was severe enough to warrent Vanco, where was the Fellow?  Is it serious or not?
  • If serious, the fellow should have come by rather quickly.  Since the fellow did not come by urgently, clearly it’s not so urgent.
  • If not so dire, why would you recommend Vancomycin, when you know the side effects are all significant for Maya?  What’s more important?  The procedure or some small degree of sensitivity towards Maya’s needs?  We will always choose Maya’s life over her hearing.  However, you need to do a bit better than tell us that it’s the standard of care.
    • What gram positive bacteria?
    • Is there an alternative?
    • Maya has not spiked a fever since… Is the use of Vancomycin the most optimal option available?

Just as I was having this discussion with the social worker, the nurse came by and told me that Maya will be getting tazocin and “pip taz”.  Huh?  Sorry, I didn’t agree to that?  I thought the fellow is going to come by to discuss the next course of action WRT to Vancomycin?   I was very glad to have the social worker there to witness why we seemed so onerous and cantakerous.   If we are in the wrong, or if we do not have a clear picture, please explain to us where our mis-step is!

Well, the fellow came by and explained what was going on:

  • Firstly, the infection is likely due to the break in the central line.  Because the culprit is likely to be her CVL, the fellow suggested that we take the line out.
  • Since we can’t use the CVL, Maya needs a peripheral line put in.
  • Vancomycin covers the most amount of bacterial infections and she would recommend vancomycin.  However, given that Maya has not spiked a fever, she did not feel so strongly in using Vancomycin.  Tazocin and Pip-taz “should” be OK.   If Maya spikes another fever, we should switch to Vanco.
  • At this point for Maya, given that the amount of hearing loss is significant, loss through Vanco should be very minimal.

OK.  That makes sense.  Yes, let’s take the CVL out.  I do not feel comfortable with Vancomycin, since Maya has not spiked another fever.  I would rather use tazocin and pip-taz.  If Maya spikes another fever, yes I agree that we should use Vancomycin.

I’ve found dealing with the ward 8-A rather frustrating.  What would it have taken to present this reasoned approach?  Dealing with Fellows and Sr. Fellows have always been very pleasant and reasonable.  Non fellows, not so much.

We are told again and again that the parents should be, must be the greatest advocate for the child.  Never has this been more heart felt than in the last two weeks.  However, it has not crossed my mind that we would be actively pushing back as much as we have this week  The frustration has been (and will likely be in the future)  that we do not necessarily feel that best interest of Maya is congruent in what has been delivered.

Parents, advocate for your child!

[Update Oct 16, 2012]

OK.  Now that I’ve had a day to calm down, I think it’s only fair that I also put down the clinician’s perspective.  I am noting this from the previous conversations that I’ve had with a few nurse practitioners as well as physicians.  Therefore, I may not be getting the story completely accurate.  Having said that, I do think that the spirit of the procedure is captured.  If anyone wishes to correct me, please feel free to do so.  Privately, publically, does not matter.

The problem with bacterial infection is that unless you can culture them, you really do not know what the problem is.  Growing the bug takes time.  Even so, you can’t really know whether the primary source of the infection is the one that’s been grown in the lab. Some bacteria have long incubation cycles.  For example, TB can take weeks to culture.  And sometimes, you may not be able to grow them at all.  And then, there is also the possibility of false positive, IE, contamination of some sort.

Therefore, in order to ensure that there is a good coverage, antibiotic such as Vancomycin, Pip-taz and Tazocin are used  to ensure wide coverage.  It is also the case that the patient may look well, but in fact sepsis may be developing undetected.  Once the infection takes over, it may be too late to try to recover from it by administering the antibiotic and result is death through sepsis.

So, this is our dilema.  On one hand, we don’t want to take unnecessary chances, in this case with sepsis. On the other hand, we do not want our daughter harmed through therapy either.  We’ve already incurred so much damage in Maya in the name of care.  Both side of the knife’s edge are slippery slopes.  The previous two weeks have high lighted this slope rather dramatically.  In these two weeks, I don’t believe using Vanco was necessary.  Next time, it could very well be the thing to use.  The truth is, neither the doctors here nor can we tell what the optimal solution is WRT to fever.  Certainly not when the fever is initially presented. For doctors, the safest approach is the best approach.  We want that as well.  But with less potential for discomfort and damage.

Possible analogy could be using the vietnam style carpet bombing as opposed to a precision rocket to target the enemy.  “Terminate, with extreme prejudice”. We would rather the latter, targetted aproach.  But we also understand that not knowing what the target is, carpet bombing may be the acceptable course of action.  It’s a slippery slope and the edge narrow.

CVL Line is Out, Dreading the pokes…

I have not written in quite a while, i guess I was kind of enjoying being away from all the chemo and the cancer world for a bit , and just trying to have a sort of normal life… and yes life was busy, pretty busy, and fun.  In fact the last two summers have been the best summers of my life.  Just enjoying life with Maya.  During this time I dared to dream of a cancer free life, and after a 2 1/2 year of being at home with Maya I decided it was time to go back to work, i craved adult conversations,  I craved some normality. In August I was very excited to return to work, but one week into it and we were hit with another bomb MDS…..

As Kirby mentioned in previous posts, it hit us hard, we cried, we were angry, sad, enraged, long slepless nights thinking, panicing, and thinking of all the what if’s,….. To all of this Maya was oblivious, still the happy girl without a care in the world, happy and anxious about starting grade 1.  During that time I often thought that I had cried so much, I could not possibly have any more tears left, but they kept coming and coming, and it got to a point where there was no other option but to look cancer in the face  and just not let it ruin our lifes….at least not that much.  And so life goes on, and so we are trying to adjust, and so MDS is becoming part of our daily lives, and so we do not sit and dwell about what may happen in the future, but we chose to cherish and enjoy every day of our lives.  Maya is pretty much alive and giving her parents a lot of grief by just being a 6 year old, but just being lippy and by just rolling her eyes at her mom who cannot possibly understand anything because her mom (me) does not even go to school, as opposed to Maya who goes to school and who knows things 🙂

I am still working. For me it is good therapy.  I am not sure how would I cope if I had to be immersed in a cancer world 100% again, just the thought of it puts me into a lot of anxiety and depressive feelings.   So I welcome my time at work.  Luckily the company I work for has been very supportive.  I often work from home, or from the hospital, and luckily Kirby has taken some time off so Maya is very much well taken care off with one parent always with her.

During the first year of Maya’s treatment and during those pretty long and very frequent hospital stays I was by Maya’s side at all times.  I just could not separate myself from Maya I wanted to be with her 24/7 even when I was exhausted, I just could not bear not being with her. Even when i was told to go home and get some rest, I just could not do it.  When I look back I remember the exhaustion, the lack of sleep, the numbness, and the disbelief that this was hapening to my child.  Those were dark days.  Now,  I would like to say things are bit easier, Kirby and I take turns during Maya’s hospital stays.  Kirby looks after Maya during the day.  We have Karen that helps on Monday and Tuesday so Kirby can take a break.  Every other day I do the night shift with Maya and then from the hospital  go to work in the morning or work from the hospital.  I have learnt that a rested mom is a happier mom and also a better mom…. and of course that gives Maya some time to miss me  a tiny bit and not be so overly bossy with me  :-), Kirby often says that Maya has me wrapped around her fingers, and it is true… I would give anything and everything for her.

Today Maya had her CVL Line taken out.  This line was put in when Maya was diagnosed with the big C almost 3 years ago.  This very precioous line has prevented Maya from getting  a lot of pokes.   Yes, there is a need to flush the lines daily and to change the dressing on top of the skin opening, but hey we have mastered that, Kirby and i can do it with our eyes closed.  During the summer there were several times when I changed those dressings on the beach after Maya had gone for swims.  We carried all of the equipment, masks, sterile towels, etc,etc.  This line has  broken 4 times (2 in the last 2 weeks)and it has been repaired 4 times, but the last time it could not be fixed properly as there was a leak.  This leak, which meant a tiny rupture in the line cause  Maya  to test positive for  a line infection (which of course, included a fever and antibiotics).  Today this line came out.

This is what a CVL looks like.  All of Maya’s blood work , chemo and all other IV medications were administerd through this line, with no pain to Maya.

Today was a loooong day.  Because Maya was scheduled to go to the Operating room (OR) in the morning she was NPO since midnight. And so the morning came, and we waited, and waited, and waited, 3pm, nothing. At 5pm I had a very humgry child who just wanted to eat.   The OR was busy and they could not give us an exact time for the procedure, and of course if Maya ate anything the procedure would have been cancelled.  Luckily another fellow NB mom entertained Maya by teaching her some card games, THANKS!  But then Maya grew tired of playing cards and she went back to “I want to eat, I want to eat”.   By 6:30 pm they called Maya, we quicly rushed down to IGT, there was another patient in front of Maya, and so we waited a bit longer. By 7pm or so, Maya finally was called into the OR.

Maya was excited that she was going to be given laughing gas to put her to sleep, go figure… Maya was also excited to be wearing the special OR uniform (typical white hospital gown).  I went in with Maya to this cold room, with big machines and lots of ligths.  I felt intimidated, and anxious.  Then i got very sad…. sad because  my 61/2 year old child was about to have surgery and she was ok with it.  She was was not afraid at all to be in this room. Maya was chatting away with the doctors and nurses, she did not mind any of the machines she was being hooked to.  She kept on asking questions, “Why do you need this?”, “How many of these stickers are you going to put on me?” (Stickers are the little sticky papers to which the heart rate monitors are hooked), “When are you going to give me the laughing gas”.  Maya got onto the very narrow operating table and was very interested on her  pillow – it looked like a jolly rancher candy -doughnut shaped, with a jelly like texture.  Me!, I felt scared to be there….but Maya was not….why not? because sadly she has done this way too many times, because all of this is very familiar to her, because she is often surrounded by people wearing special gowns and masks, because this is the life that she knows, and she is used to it.   If you look at her back, she has way too many marks from all the bone marrow aspirations and biopsies she has gotten, and yes she gets laughing gas to be put to sleep, so she does not feel these procedures.  She knows this, and when she knows that something major is coming she would ask to be put to sleep.  And so I felt so much sadness and anger that my ‘6 and a half and three quarters years old’ had to go through all of this.  Once she fell asleep I was scorted out of the OR into the waiting room. I must have tears in my eyes because whoever scorted me out said, “it is hard on me too when i see a child who is not scared and does not fight the procedure”….Yep, I wish that Maya did not have to go through all of this, but this is not the case, and so I cannot help it but be in awe of her, in awe of her strenght.

Before the surgery we were read and explained all of the possible complications, a long list.   Thankfully Maya’s line came out with no problem.  Maya woke up very quickly after the procedure and of course she was upset because it was past 8pm and she was hungry “I did not even had breakfast today” she said.

While we waited to be discharged from the OR, Kirby went to our ward to heat up Maya’s food and have it ready, and so it was ready by the time Maya was wheeled to her room.  For Maya it was as if nothing had happened, her pain was well controlled and she was talking about showing her line free chest to her friends

What does it mean for Maya not to have a line….it means that every time we go to the clinic for blood work (twice a week) she will get a poke, if she needs a platelet transfusion (she gets them once every 10 days) she will get poked.  If she needs chemotherapy or any antibiotics, she will get poked… and so we are hoping the infection goes away pretty quickly so a new line or a catheter is put in as soon as possible.

Maya had her last round of Vidaza today.  Before the fever on sunday, we were hoping to get discharged today,  however due to her line infection she is on antibiotics, which means a few more days in the hospital. hopefully she will get discharged tomorrow or the day after.   We are Hoping for our new friend vidaza not to cause Maya’s counts to drop so much so she can go back to school in between treatments.

I wanted to say thanks to all of you, family, friends, friends of friends, neighbours, and all of the blog followers, thanks for all the support, for all those messages of hope, and for all your prayers, chants and positive energy you send Maya, we are forever grateful!

I wanted to share this photo of me and Maya from this past summer, as well as a photo I love of Taylor and Maya.  This was right before Maya was diagnosed with MDS… Utah, july 2012


And She Said Hydration On Line Exceptional!

Well, we’re back in the Oncology wing at Sick Kids for our first round of Vidaza.  Yesterday, Maya received her first round of Vidaza.  I had this sense of dread come over me, as we started the preparation. Our old friend Ondasetron was administered through IV.  Grrrr…. Vidaza does not mix well with water.  At room temperature, it will stay in solution only for 45 minutes.  So, when ondasetron was finished, the nurse had Vidaza up and running right away.  5 minutes… 10 minutes and it was done.  5 minutes, 10 minutes and no reactions!  Matter of fact, Maya wanted food.  That put me at ease.  It meant that there was nothing significant going on to distract her from thinking about her empty stomache.  All good.

Maya was on hydration and that meant I can relax.. .Surf a little, take a snooze, y’know the hard stuff looking after a 6 year old.  A volunteer also showed up and  that meant that I didn’t have to get up every two minutes to cater to Maya’s whims.  How da heck did this happen to a guy like me??? Call it love and move on, I guess.  Then, Maya’s CVL developed a leak.  Oh jeeze…  We had this line repaired last week.  It turns out that the first repair sprung a leak.  The Vacular access team was called and in the mean time, Maya was taken off hydration.  That’s when I found out that only 20 ml/Hr of hydration was being administered. Wha????

Maya is getting Chemo, it can be nephrotoxic and she’s only getting 20 ml of saline per hour?  You can spit 20 ml of saliva in a couple of minutes. So, I talked to the nurse and she says, that’s what’s on the order.  OK.  As soon as the line is fixed, I would like to see it increased.  In the mean time, we wanted Maya to drink more.  I had her drinking slurpee for heaven sakes!

Well, the vascular access team was busy and had the line fixed around 10 PM, and it requires 4 hours of “cure” time before it can be used.  That meant that it wasn’t until 2 AM before Maya would be hydrated.

Grudgingly, I went home.  At least she’ll be hydrated.  In the mean time, I had visions of Maya’s kidney being ravaged by the chemo, albeit at 50% dose.  When Maya had hemorraghic cystitis, she was so far out of chemo no one suspected such a severe reaction.  Matter of fact, Maya’s oncologist relayed this information to the doctor who came up with the protocol.

When I came in this morning, Maya was still not attached.  I lost my cool.  In my mind, I saw Maya’s kidney being assaulted.  I asked the nurse and asked why Maya was not attached. The newly patched line developed a leak, and hence hydration was not initiated. I thought Indira who stayed over night should have been woken up.  I asked for Maya’s creatinine level and it was only marginally elevated. It is only then I took a breath.

Subsequently I called Maya’s nurse practitioner and asked about hydration.  She explained that typical oral hydration was sufficient.  So then there was another meeting where they explained to us on what was being accomplished by the team and we again explained why we are seemingly hypersensitive.  The outcome was that the team will endeavor to communicate with us better.  And we will also communicate more.

At the end of the day, I made something out of nothing.  Except… that’s not quite true, is it?  There has been sufficient incidents of adverse side effects which warrents our hypersensitivity.  And on every occassion, we asked to be informed on everything that is happening/administered to Maya.  Most care providers takes this request simply enough. But it is also true that some do not, for whatever the reason.

Our experience last week with the confusion of vancomycin is a testament.  I am often very appologetic of calling things into attention.  But at the end of the day, even if I come across as being difficult, it is something that I feel I need to do.  And I know that everyone here at sick kids agrees with advocating parents, even if it means they may be a pain in the butt!

In Jail

Tuesday morning, we were scheduled to get the MIBG injection in preparation for the scan on Wednesday.  It was just a routine event that should have taken nothing of the day.  (Talk about foreshadowing!)  Of course, Maya being febrile, after the injection I took her up to the haemotology clinic just in case.

Mary, Maya’s nurse practitioner was kind enough to come see her.  Tuesday is not a clinic day and Mary made time out from her day to examine her.  Thanks Mary!   Maya was tired and wanted to sleep.  Maya’s blood pressure was lower than usual (clocked in at 70/30) and her heart rate was elevated (in 150/160 range) Maya was also a little dehydrated.  These symptoms, along with fever triggered the cascading point, at which the sick kids machine kicked in.

Dr Cada rushed in to examine Maya and within minutes, Maya was on hydration.  Blood pressure was taken every few minutes and chest X-ray was also rushed.  Blood test was also ordered for culture.  The sudden seriousness of the activities raised my axiety level significantly and I would pay for the rush of adrenalin later.  As soon as I heard the blood culture request, I suspected that the clinicians were worried about sepsis.  Dr Cada also did not want Maya to sleep and talked to Maya constantly to keep her awak.

With hydration, Maya perked right up.  And within an hour, she was talking and was being her usual self.  Her blood pressure and heart rate also returned to normal range.  So, potential crisis averted?  I didn’t think Maya was septic, but the seriouness of the events scared me.  We were admitted to 8A.    Within a couple of hours, preliminary blood test did not reveal any bacterial infection.  48 hour stay … oh well.

Because Maya was febrile, and since there was significant concern for sepsis, three different types of antibiotics were administered;  Vancomycin, Tazocin and Ciprofloxacin.  By this time though, Indira was here and I had left.   Already, Maya was brave enough to get a pockey for blood test.  Of course, Indira would have other excitements as well.

Firstly , Maya’s CVL line broke.  This is the line where all the IV fluids are given and  the line was introduced almost three years ago.  It had broken once before and was patched.  We would need to patch it again.  But, patching is so much more preferable than having to replace it.  After all, the other end of the CVL is sitting just outside the heart.

Secondly, Maya had an allergic reaction to Vancomycin.  I was asked whether or not Maya was allergic to Vacomycin.  I did not recall if Maya had it before and had told the physician to this effect.  Well, Maya is special. And she had reacted to Vancomycin.  Firstly, she started to develop rashes on her scalp (Red man syndrome), even though the drug was administered in such a way as to not to evoke this reaction. But Maya also developed neuropathic pain, as she had done when receiving chemo before.

Luckily, Indira asked the over night doctor to stop the infusion of Vancomycin and received a significant resistance from the doctor.  She called me and asked me to talk to the doctor.   I thought the doctor was a resident because he  came across being paternalistic and even tried to scare us on how grave the situation was etc.   He felt strongly that Vancomycin should continue.  By this time, we had already looked up the side effects and was horrified to find that it was otto-toxic (causes hearing loss).  I presented our counter arguement and agreed that we will discontinue Vancomycin, but keep the other two and follow up with Maya’s haemotologist in the morning.

Thankfully Maya developed the allergic reaction right away and so very little of Vancomycin had made it into her.  Had she not presented any reaction, she would have received a lot of it and may have lost her hearing all together.  If we have to make the decision on Maya’s hearing, it will be under the most serious circumstances and with “eyes wide open”, not because we were unaware.  We’ve been away sufficiently long enough time that we’ve become complacent.

So, as we are returning to oncology wing, we were reminded of a very valuable lesson again.  We understand that everyone here is there to help the children.  However, we need to advocate on behalf of Maya and ensure we are on top of everything that’s happening.  We will need to insist that we know everything that’s being administered to Maya and that the staff here understands the issues specific to Maya.

We are here because of the possibility of sepsis and not because of sepsis.  It would have been tragic had Maya’s hearing was additionally compromised because of being overly cautious.  It may be the case, that we’ll face additional caution because of Maya’s condition now.  Yes, it’s warrented.  It will always be better to over-react than under-react.  But, not at the cost of doing Maya harm.  We’ll need to be additionally vigillent.  We were lucky to have been reminded of this lesson yesterday.

We’ll be in here for 7 days, followed subsequently with 7 days of Vidaza therapy.

Road Trip Part 2 (Grand Canyon)


With my mother safely tucked in the RV, we headed out to Grand Canyon.   The thought was that the road to Grand Canyon would be gentler than the one into Utah.  Hopefully we wouldn’t be hitting big hills that would test the RV in the 40 degrees weather.  Once we climbed a bit, the heat would lessen due to the altitude.  I think we did OK.  Aside from a couple of hills outside Las Vegas, the roads were good and we made the journey in about 7 hours.  Well, it was longer than anticipated, but I’ve begun to get used to the idea that all things take longer an an RV.

Ariving at Grand Canyon was awe inspiring. The vista was amazing. Wonderous!  For me, it was also very surreal.  The past week or so was very difficult.  There were challenges which I had not anticipated.   Trying to keep my head cool under these pressures, as well as trying to be gentle with … hormonal boys in tight quarters was not part of the preparation process.  My bad???

Well, standing at the edge of Grand Canyon was the first goal met.  I was genuinely happy. Grateful that we got there safely.  Happy that we made it.  Happy that everyone were awestruck.  Happy that they were there to see one of the nature’s wonders.  Happy that I was able to put a tick mark against one of my “bucket list”;  showing my family what I always wanted them to see.   Even Maya thought that the Grand Canyon was cool. Well, at least for about 5 minutes.

We wanted to camp in the Grand Canyon National Park.  There weren’t any spots open.  We were given the information that there was a dirt road just outside the park where we could camp over night.  We parked the RV and the boys made a splendid fire.  I was pushed aside while the two young men, my son and my nephew spent a good hour fidgetting to get the fire going.  I was pushed aside!!!  Oh, they also laughed at me for being a red neck.  You see in Alberta, you just grab some gasoline and there you have it.   These boys fiddled, tending it to make the most perfect fire ever.  I would have had it done in 2 minutes.  But…

We sat around the fire happy to have made it to Grand Canyon.  We listened to the cayotes in the distance and turned in. It had been a good day.

Next morning, we headed back in and luckily found a camp ground for the RV.  We did have to plead to the Park Ranger and ultimately had to unhitch the trailer and leave it at the Information Centre.  But we did have a spot in the GCNP for two nights.  We also brought the bikes out.  Master Jon Jon rode his bike all around the park, sometimes on his own.

When the kids and I took off on the bike, we definitely got some heads to turn.  There were three of us up on my bike with the sidecar and Jonathan often played the role of a scout leading us from the front.

I also convinced my mother to be a passenger on the sidecar.  Initially, she flatly refused.   After a full day of convincing, she got in just to go around the parking lot!  😉  Muhahahha!  Mom really enjoyed being in the sidecar.

Maya started out fearing the height.  She would not go anywhere near the edge. By the second day, we had her walking on a trail on the side and venture out.  She decided that she really enjoyed climbing.  Her new found joy would be carried with her for the rest of her trip.  That also made me very happy.  It’s not the climbing really.  It was the openness for her to engage new experiences.  One step behind us and many more (hopefuly) to come.

There are no dining cars in a motorcycle sidecar.  But we did enjoy a large bag of chips.  We did not want for more.