And So, We Continue the Fight

I have not really written in a long time (this is Maya’s mom), maybe because I am so immersed in this cancer world that i grab every opportunity i get to just breath and pretend, perhaps, that we have a normal life….but our normal life now is weekly visits to Sickkids hospital, chemo days, and just trying to manage work and school and Maya’s care.  Yes, both Kirby and I do not really take time off from work, we just make it work, we alternate time, we work from the hospital, we go earlier to the office, or we get up earlier so we get our work done, we take her to the hospital, to school, to soccer, to ballet , to playdates..yep Life is busy, but good busy.

When i look back to when Maya was diagnosed with MDS almost a year ago, I remember the despair, the tears, we felt hopeless.  Maya was not making any platelets, she needed transfusions twice per week.  The discussions we had with the medical team were so blunt. We could not go into transplant because we could not find a match for Maya.  I asked that perhaps we could have a  baby and see if the baby could be a match, they told us, we did not have that kind of time, we did not have 9 months.

We talked about using her chord blood that we banked when Maya was born..thankfully.  Because Maya has had 3 years of chemo plus a bone marrow transplant that almost killed her, the message was, it woukd be a ‘flip of a coin’, basically 50% chance that she would come out of the transplant alive…. That was almost a year ago… more than 9 months, and She is still alive and kicking, kicking hard.

During those dark times,  I remember asking God to let us get to halloween, and we did, then i remember asking to let us get to Christmas, and we did, and then i asked to be able able to celebrate Maya’s 7th  birthday in january, and we did, and then a miracle happened.  Maya started to make platelets, she had no more blasts in her bone marrow, the translocations were still there …  but then the translocations dissappeared…..  I do not know how to explain this.  Perhaps she will relapse as the doctors say.  But they have said many things, and for now we just live life and enjoy every minute.

Maya has been doing GREAT! Every day i wake up and i see her, I feel so blessed.  I remember also asking for Maya to finish grade one, and she is about to do it….  I know that there are not many believers out there…for a while i was angry at God too, but now He is the only hope i have, my faith and the believe that God will find us a way… and perhaps my Dad,  another cancer warrior, who I am sure is looking after Maya from up there…

Of course when the the different possibilities of what could happen to Maya play in my head, it is just painful, and so i try not to do it, but sometimes we have to in order to look, search and plan for next steps…

This week was hard,  an ultrasound we did to see why Maya’s creatinine was acting up revelead that perhaps there was a new mass , or maybe it was there before… The report did not confirm either, it said to follow with further imaging.  I remember looking at the mirror, and all i could see was sheer terror, fear, panic, anger…Is the NB acting up after two years of just being there? … We continued to do our best to have a normal life.   An MIBG was done, we were desesperate to know the results.  They did not see anything new…pheeew, however they said a bit more uptake in the back and in her tummy, what does it mean?  The Doctors are not worried, an MRI will be done in the next week or so.  I remember a year or so ago,  MIBG scans showed that there was less uptake on some of the spots… we wanted to happily jump, but the doctors said there was not literature out there to say less or more uptake meant  less activity or more activity…should we take it the same way now?… well, I need to see that MRI, we cannot just rest and hope for the best.

Maya for now has had a wonderful quality of life, no pain, has put on some weight, her hair is back ,although it is thin, she still loves it.  I was able to put it up on ballerina bun for her ballet recital rehersal yesterday :-), and yes, another ballet recital, another year.  I think I will keep on asking for more milestones, for  more years.  This is Maya right after the rehersal yesterda June 20th

Maya - June 20, 2013

I know that there are a lot of families, specially NB families out there that follow Maya’s blog.  We follow your blogs too, and one of the reasons we have this blog is to give back what we got from all of you when Maya was just diagnosed.  We franctically read everything, how the kids were doing, what were their reactions to chemo, what were your tricks to take pills, etc, etc.  Hopefully we are doing the same.  Even though we may not have met, we know of each others kids, we cheer for them and also cry at night for them, and we pray.  Maya prays for so many kids at night, she does not even know them, and I just keep adding more names to the list…..

I wanted to say THANK YOU to all of you for your prayers, your chants, your positive energy, I firmly believe that they are working, , please continue to do it for Maya, she needs it.  The battle is not over, we just hope that NB and MDS are too weak to fight and that slowly but surely we”ll get rid of it.

For all those cancer moms out there, yes life is not easy, as a matter of fact life is hard, and yes Cancer comes and tries to take not only your child, but everything else around it… It is a battle we must fight, and yes there are days I think I cannot get through the day,  and yes there are days that I just feel sorry for myself, but I know those feelings would pass and that I would overcome those and be stronger and ready to smile at life.   Being busy works for me ….. Sometimes I feel I am crazy for taking on so much (Yes I decided to go back to school), crazy because i have only slept a few hours and I need to keep on going, …. but being busy, keeps me sane, the moment i relax, panic sets in… Being busy works for me now that Maya is doing well… and so  we continue to fight!

I wanted to share with you some photos of Maya from the last couple of weeks.

Maya, Jake's 10th birthday
Maya at Jake’s 10th birthday Party, June 2013 –
Maya Soccer
Maya at the soccer field – May 2013

Jake Aragorn Schafer

Catherine and Jere Schafer are very good friends of ours.   We’ve formed a very special bond as we lived parallel lives in the neuroblastoma world.  Their son Jake had neuroblastoma. We’ve both searched for trials and always kept an eye out for each other.  We kept our eyes on Jake when they were in MIBG therapy, for example.  Jake passed away early this morning.  Jake was a scrapper.  You would never guess that he was such a gangster, that beautiful boy.  He always got what he wanted, although what he wanted was never that outrageous for a ten year old.

Jake fought. He had a lion’s heart.  “Jake the Lion Heart” sounds right!  He could bring down a grown man with his tenacity and determination.  But you would never know he was in a battle for his life. He had this sense of ease about him that was hard to fathom.  He, like all the children with neuroblastoma was extraordinary.  I loved the way that he didn’t really give a damn what other people thought.  He marched on in a way that was distinctly Jake.  I loved the way he was so gullable.   Jake, we don’t eat dogs or cats or racoons or squirrels.  So innocent and so easy to please.   We loved the way he would light up when we gave him money.  I mean he really lit up!!! If he only knew how much he was worth… perhaps he did.

When a parent is presented with a death of their child, I doubt you can say anything that could be comforting.  You are beyond the place of social conventions and niceties.  What Sharon Richards said to me when her son Keon passed always gave me some comfort.  The joy that Keon Richards brought on this earth was so great, she would choose to have him again and suffer the consequences…

It gives meaning to her loss and their suffering. Keon Richards was worth the suffering the Richards have in their lives.

I know that Jake brough untold amount of joy to his family and friends.  And while the loss may be devastating, it is only because he was such a joy.

We will miss this little boy.  If the loss is unbearably difficult for the Schafers’, it is because Jake was such a beacon of light in their lives.  Our hearts are breaking for Catherine and Jere.  Rest in Peace Jake.  You have left a mark on many peoples hearts in your short time here. You will always be in our hearts.

Road Trip Part 4 (Post Script AKA Haida Gwaii) Odds are Good but the Good are Odd

On July 3rd, 2013, Taylor, Maya and I headed out for Vancouver again.  Why not?  We have made it to the summer.   We have seen a lot of little frustrations in our new Paradigm over the past year.  We’ve had many scares.  For example, there were nights where I could not sleep because Maya’s platelets were so low.  A simple sneeze could cause an internal bleed that would end her life.   Improbable?  Even with platelets as low as 5 (average is 150 – 400), yes, improbable.  But we’re not so unfamiliar with improbabilities in our lives.  And a slight fevers have meant a trip to Sick kids emergency.

Oh, here is a little side note for you.   One evening, we decided that we needed to take Maya in.  Maya was running a fever. We, to our distinct displeasure have a “VIP” status at sick kids emmergency.  As soon as we arrive, we’re ushered in.   One parent who were waiting in line got really upset that we cut the line and started to complain to the triage nurse about us.  Of course, the nurse can’t diverge any info due to privacy issues.   I heard about this after the fact as I went to get coffee.  I even try to find this woman afterwards.   I wanted her to know why we get preferential treatment at sick kids emmerge, not because I somehow feel the need to justify to her.  But rather, if she knew, then perhaps she would not feel so frustrated that she had to wait a bit longer.

Here’s another side bar:  When Maya runs a fever, there is an infection of sort.  It is either viral or bacterial.  Virus, you can’t do much about that and most of the time and it just needs to run it’s course.  If it is bacterial, then you’d want to know so you can treat it.  Now with bacterial infection, you have to culture it and see what it is.  The problem is, with certain types of bacteria, it can run amock before you find out.  You may develop sepsis and it can kill you.  Such an event can happen in just hours, so it is not taken lightly. Generally, the hospitals will apply a heavy duty antibiotics with wide coverage prophylactically just as a precaution.  Not a bad thing.  Except, these antibiotics, such as Vancomycin also have pretty significant side effects, including nephrotoxicity and hearing loss.  We are not too crazy about these side effects.  Maya is sensitive to Vanco and she had developed red man syndrome when she was given Vanco.   “Yes, Maya has allergies.  She is allergic aminoglycosides, she is allergic to platelets and no Vanco!!!”   There were times when Indira had to yell at a resident at sick kids because he was trying to strong arm her into giving Vanco to Maya.  I was at home and Indira out of frustration, called me to talk to the resident:

Resident:  We are concerned about sepsis and we should give Vanco.

Kirby:  Do we know what the bug is?

Resident:  No, but it’s part of the standard of care.

Kirby:  I know that.  But, Maya is different and we know Maya is sensitive…. plus Maya has lost a significant portion of her hearing.  Her temperature is stable. She is well hydrated. She’s coherent, eating and there are no signs that Pip – Tazo is not working.   If we are going to potentially sacrifice Maya’s hearing all together, then it is with a clear understanding of the trade offs and because we want her to live.  But I strongly object to sacrificing her hearing because you want to follow procedure.

Resident:  We should give Vanco because one of the more common bugs, gram-negative bacterium can cause Sepsis very quickly. That’s what we are likely dealing with.

Kirby:  But that’s why we have Pip-tazo going.  You can’t suck and blow at the same time.  Either you don’t know what the infection is  and within a couple of breath tell me that you think it is gram negative.

Kirby:  Thanks for the concern, but we’ll keep a close eye on Maya and hold off on Vanco.

Well, just a couple of side notes.

We’ve also witnessed a wee bit of a miracle with Maya as she now has no evidence of MDS!   I often wonder what the odds are.   Roughly put, we were at 10,000,000 to 1 in terms of getting neuroblastoma as well as getting therapy related MDS.  Children do not usually get MDS and to survive it for a year?  There is just no numbers you can pull out of a clinician anywhere that will peg the statistics.  So, we are blessed to have Maya with us.

Matter of fact, Maya has put on some weight, almost to a point where I don’t want to see any more weight.  But then, I immediately look back at times when Maya would not eat for days on end, due to her illness.   Let it ride.  Her hair is long now and I take distinct pleasure in brushing her hair after her bath, even if each stroke is encountered with an “Ow, ow, ow…”  My paternal advise to her?  “suck it up kid!”

Maya is well.  And the opportunity is here.  If not now, when? So, off we go.  Maya wants to see the dogs, daegee and chokomon.  We have Vancouver Island to visit and possibly,  Haida Gwaii?  But how?  Flying is cost prohibitive for the three of us. And we’d need a car when we get there.  Ferry is equally prohibitive.    Nope!  Do I really want to drive there and back with two kids?  Ummmmm….. don’t want to?  Alright.  That’s “tomorrow’s” problem.  Let it be resolved then.

Maya had a great time with the dogs.   My sister Susan kindly picked us up from the air port.  When we got to her place, the little rats jumped all over us, Maya in particular.   I worked a few days remotely from Vancouver and during the evenings and weekends, we went  to enjoy this beautiful part of Canada.  I think Maya was the busiest of us all.  What de hell???  And she hung out with Tia Jenn on the Kitsilano beach.  She took the dogs our for walks with Auntie Susan.  And on the first weekend, we took a trip to Vancouver Island.  At the recommendation of Tia Jenn, we went to the botanical beach.  It really doesn’t matter where you go, BC is just lovely.  Also, my (not so) little nephew, master Jon Jon,  drove down all the way from Kelowna to join us for the weekend.  That was really nice.  So, we spent a short weekend on  Vancouver Island.  We also borrowed a tent from MEC and so we were able to camp, with a fire, hotdogs for dinner and of course Marsh Mallows.  We also got to see the botanical beach and the China beach.  So, all new to us.  Taylor on the other hand, had a friend to visit on Comox.  So, that was also nice for him.

Now what to do about the time I took?  Fuggedabou-it!  Just do it.  Ummm…. 1500 km to Prince Rupert + 7 hours Ferry ride.  That’s going to be a bit painful.  We are motivated!  Well, I am motivated.  So, on a wednesday morning I packed up the car and headed out.    If we can make… 17 hours, to prince rupert, that would be really really good.  Since we took off around 6:30 AM, that meant we’d arrive in Prince Rupert around… midnight.  I hope the hours will just melt away.  As is the case when I am on a bike trip, first part of the day is all about fidgeting.  Time crawls. But at some point much later, miles seem to just melt away.  At 11 PM, we decided to stop, just outside Prince Rupert.

The ferry ride was non eventful.  Perfect actually. May a found a couple of kids around her age and she played for the entire trip.  That was awesome.  It was just what I needed.  When we landed at Skidegate, we drove another 100 KM to get to Massett, where we booked a hotel room.  What can you say about Haida Gwaii ? I think it’s a paradise.  It’s not a paradise in the tropic deserted island sense, but a paradise nevertheless.

Land is something very special.  I think if we dig deep inside our DNA, you see how land affects you at the very core, at the fundamental level.  After all, it nurtured all living things on the planet. Just as much as Utah impacted me, Haida Gwaii impacted me in another way.  Utah was rugged, harsh and utterly beautiful.  Haida Gwaii is … different.  I think mother earth might have called Haida Gwaii one of her homes.  It’s nurturing.  There is very little that can kill you, (except your stupidity) and the land/sea provides bounties that is hard to believe.   It has a feel that time slows down on this island.  People are friendly, but a bit odd.  Our guide told us that.  And you do need to be a bit odd to live in a place where you are removed from the main stream.  I loved it.  As I write this blog post,I realize that I haven’t taken any time away from Cancer in 3 1/2 years.  It was the first time when we did not worry about it.  Maya was well and we just enjoyed each others company in this wonderous place.  No finger pokes, no IV’s, no scans, no chemo. But of course, we understand now what to look out for, such as petechiae and bruises.

We drove around to different places on the island and fully emmersed ourselves in this place. We had a guided tour of the Masset area,including the Naikoon Park.  We enjoyed it so much that we decided to camp there.  We were right on the beach,looking North to Alaska.  We can see it on a clear day.  We wanted to do a day tour to  the south, but the tours were full.  Oh well…I guess we’ll simply have to go back one of these days.

One of the most wonderful experience for us was crabbing.  You simply wade in oh about knee deep in to the water and you look down and grab the crab right out from the water. The locals were using fish nets.  We didn’t have one.  But we could simply grab them out of the water.  That was just awesome.  We contemplated grabbing a half a dozen or so for our dinner but decided against it. Had we fishing gear, I am sure that we could have done some fishing as well. But, we didn’t and that was fine enough.

We were also told that in late August,  Salmon would be teaming up the rivers.  There were no shortage of fishermen around prince rupert in many tributaries. But fishing in the rivers on Haida is illegal. I would have liked to have seen the salmon come up the stream.

Haida was a strange place. I could not really put a finger on it. And I am not sure that I grok it entirely.  If I had to guess, I think it is that this placed lacked an agenda.  Things were as they were because they were as they were.  There were no developments to speak of.  There were no expansions.  There were no bigger or better. People lived.  It’s a place where “rat race” could possibly be understood literally.  So, it may be a place to revisit again.  Regardless, I am glad that my kids and my sister were able to see this place that seem to offer nothing, but at the same time offer everything that we brought.

I was also glad that I had the opportunity to cross off the place that I so wanted to see from the previous summer.  It was crossed with a sense of accomplishment but not with a sense of victory which one often feels.  It was not a place like that nor was the trip about fulfulling my own sense of achievement.

For a moment, we lived.