All posts by Kirby

3 years and counting

It’s been quite a while since we’ve posted anything on our page.  It’s about time.   What’s been happening in the last while since we’ve made a post?  A lot of nothing punctuated by jubilations as well as the familiar feelings of helplessness.  But, overall, I think it is safe to say that we’ve moved from being the cancer family to a cancer survivor family.

In February, we’ve made our annual trek down to Memphis, TN.  This time around, we drove the 1000 miles trek.  Maya has a lot of “dead space” in her lungs and she is not suppose to fly.  So we drove.  The visit was hectic as usual and we rushed from appointment to appointments trying to squeeze in all the visits we were supposed to.  Succinctly put, everything is fine as we could expect.

Her counts are good.  Her chimerism is 100%.  Her lungs have stabilized and don’t expect additional deterioration.  We don’t have any room for further deterioration.

Maya is enjoying her life to the best that she can.  She is active in drama, violin and has sleep overs with her friends on a regular basis.  She is doing well in school, and while we, as parents would like her to do better, it’s nothing to complain about.  We do have to deal with lung issues, especially during the flu season.

And we do have to be careful for pneumonia.  And while we would rather be home, we have about a weeks stay here at Sick Children’s hospital here in Toronto.  Friday morning, Maya was a bit off, but well enough to go to school and even go on  a play date.  She was a bit under the weather Saturday and broke 40 degrees during the evening.  So, on Sunday, we decided to bring her in.  Yup.  Another day at the emergency.  Off we go.

And we settled in for a long day.  Maya was complaining about a soreness around her left chest area.  We gave her some tylenol up to now, but it was no longer cover her discomfort.  She was starting to ask for morphine.  And in the mean time, the chest X-ray showed some opacity that was thought to be pneumonia.  Well, we’re in for at least 48 hours.  In the course of about 1 hour, her pain became acute and Maya was screaming her lungs out due to pain.  Screaming didn’t help either.  It caught us off guard.  How can she go from being ok to screaming her lungs out in a matter of minutes?

Thankfully, our emergency doctor was Dr. Moss;  Maya’s old paediatrician.  He was the one who got us to come to Sick Kids when we were first diagnosed.  And we hadn’t seen him until very recently, back at sick kids emergency.  He was still troubled with the not catching the Neuroblastoma earlier, some 7 years ago.  I never looked at it that way.  If anything, he caught it early enough that we still had a fighting chance.  Had he not caught it when we did, 7 years ago, the story could have turned out much differently.

Well, hydromorphone was ordered right away and within 15 minutes or so, Maya was drifting off into the opiate induced dream land.  Thankfully, we were lucky today.  Had we waited, the amount of pain that Maya would have had to deal with would have been significant.

So, here we are.  We have pneumonia.  It’s not a big deal.  But for us, it is something that we have to deal with.  In the world of paediatric oncology, often, the ups and downs can occur within minutes.  For us now, these dramatic events are starting to come at a slower pace with less intensity.

A good part of Maya’s life was written for her.  It was written by her doctors, nurses and importantly, by her parents into her flesh. But regardless of the track marks, and puncture holes and scarred lungs, her spirit remains high, inspired and full of life.   We will go on with these visits and undoubtedly, some will require hospitalizations.

She may not be able to climb a flight of stairs, but Maya will always smile at Don, our crossing guard.  Maya will not be able to run with her friends, but she will always be a giant among her friends.  Maya knows the difference between morphine and hydromorphone and knows when she needs to listen to her body.  And while she may have spent more time in hospitals than most, she will engage her life with fervour and gusto that betrays her young age.   She will impress you with her positivity and her zest for life.   You would never know… how challenged she is.  And that’s just a beginning of a little girl who came to show how to live like a giant!

One of the Lucky Ones…

I had a chance to talk to a lovely physician who was  interested in telling our story as part of an initiative to tell the healthcare stories.  We agreed to the interview fore-mostly because I think we have a story worth telling. More importantly, our success was built on those who came before us;  through their participation in the therapies that are available, through their losses and successes. We are now, part of that larger landscape. We add our name in wanting to help in whatever capacity we can.

To be sure, we are an outlier in a continuum that has more success stories than ever before. Our story is important because it shines a light in an area where the challenges are still greater than the successes.  More than half of the children diagnosed with Stage 4 Neuroblastoma will not survive 5 years.  Out story is important because addressing the needs of the subgroup which we belong to, (stage 4 subgroup) the hope is that the benefits will translate to other sub-groups. At least that is my rationale.

There are two dominating emotions that we deal with on a daily basis. The first emotion is that of ineffable gratitude. Yes! Maya is with us. All the possibilities can still be play out. The future concerts, plays, school events, first kiss, first love etc can all still play out. We can still watch her sleep at night and have our hearts overflow with the love of our child.

We are grateful for all the people who helped us in our journey. And there are so many people to thank. Doctors after doctors, nurses after nurses, who looked after our Maya…  Those who prayed for us, chanted for us… there is an unending number of friends, teachers, colleagues that all played a part in keeping our Maya alive.

The subsequent emotion is that of anger. How could you do this to our child? Again we are part of the larger landscape that will live with the effects of the therapies. We started with “Stage IV High Risk Neuroblastoma”. We are now, High Risk Therapy Related Mortality group.

  • Maya has lasting damages.
  • Maya is likely to adjust poorly in society.
  • Maya will not do well economically.
  • Maya will not live as long.
  • Maya will likely have other complications.

While I applaud every little successes that comes our way,  questions arise.   When will we save our children from dying? The image of children, those friends of ours, are forever etched in my mind. Those friends who are no longer.

You (Oncology) have to do better. Our current methodologies are not good enough. Not by any stretch of the imagination.

  • To whom do I forward my questions to?
  • To whom shall I vent my frustrations to?
  • The oncologists? They’re part of the machine too and they are in the trenches with us.
  • The bureaucrats?
  • The Government?

It is not clear. And when such criticisms are voiced, often, the type of response that we get are:

  • It’s much better than 10 – 15 years ago. Yes. Maya would likely have died 10 – 15 years ago. So, yes. But have we really come that much further? I wonder.
  • What do you want us to do then?  Well… do better. Why would you ask a non physician such a question? Do you tell your auto-mechanic how to fix the intermittent knock coming from the car?

We accept and live with what we have, even if each little cough that Maya has, is a dagger to our hearts. Even so, that is something to be thankful for. Because the possibilities are still great.

And in the meantime, Indira and I can now turn inwards. We look at the wasteland that was created inside ourselves in our efforts to keep Maya alive. The damage is also in us. PTSD that has been noted in the paediatric cancer parents is real.

The thoughts and the emotions which we have lived with need to be dealt with as well;  those terrible terrible days when the blackness overwhelmed us.   The anguish that came with not being able to do anything to help our daughter must also be dealt with.  The consequence of hanging onto those terrible emotions will continue to hurt us.  And we will not give another inch to cancer.

We have lived through an extraordinary event in our lives.   We are not alone.   Because we know what that “place” is like, we want to help, although it is not yet clear how.   We will find a way to contribute more than we are now.

We are the lucky ones.   There is no denying it.   We hit a jackpot.  And we are thrilled!  And even as we inspect the damages in us, we bask in the warm sunshine called Maya.  We bask in the profound human conditions called Love, Devotion, Compassion and Hope.

Two Years Post Transplant check up

[Feb 9, 2016]

Apologies for not updating sooner… Last week we got the results from Maya’s check up at St. Jude, she continues to do well, her chemistry was perfect! Bone marrow aspirations and biopsy were clear, chimerism of the blood is 100%, marrow chimerism 99-100%… Breath. We are beyond happy and grateful . Thank you everyone for your prayers and good thoughts .. They work!!! ‪#‎hope‬ ‪#‎faith‬ ‪#‎believe‬ 🙏🙏

A photo of maya exactly 5 years ago with her little cousin Lily and another one taken this past weekend

Gracias a todos por sus mensajes y oraciones, los resultados de maya han sido muy buenos. Maya sigue en remisión . Un abrazo ‪#‎fe‬

Maya con su prima Lily hace 5 años y la segunda foto es de este fin de semana

[Jan 28, 2016]

Thank You everyone for your prayers and support.

Maya and kirby made it to Memphis yesterday. They were supposed to arrive on Tuesday night but missed the connecting flight in Chicago due to weather/aircraft issues so with no luggage (they were asked to check in the carry on bag in Toronto) no clothes, no toiletries, and no meds, they slept in Chicago and took the first flight out to Memphis on Wednesday morning, no without being delayed again due to the plane being de-iced .

Maya had appointments starting at 7 am at St Jude, but only got to the hospital at noon. So kudos to Kirby and Maya who took it on stride and went straight from the airport to the hospital with the same clothes they had been wearing the day before (used as pjs as well) and endured a long day of appointments,only to check in to the hotel late in the day. Not to mention that maya had to be NPO for her 7am test which could only be done at noon, which was 1pm Toronto time with a hungry Maya not able to eat a thing.

Also thank you to St. Jude they were very supportive on rescheduling appointments not once but twice as their arrival time kept changing.

This is late at night. kirby and Maya exhausted after a very long day‪#‎facetime‬ . Today Maya starts appointments at 7am. She will be sedated for bone marrow aspirations and biopsies. Thank you for your prayers

Breathe

When we were in the “thick of it”, all we could do was wish for the days when we would leave all the madness, this nightmare behind. We would live our lives quietly and simply. We would live with humility and gratitude for this precious thing called… life.

Perhaps we would even laugh at the terrible terrible nightmare we had lived through. In this idyllic world, there was a distinct line between being a cancer patient and not. Where did I get this impression from?

It’s not that simple.

Being in remission is a continuous process. Time is of the utmost essence, where longer you are in it, better your chances. This fact is well known, albeit it is discussed in terms of 2 and 5 year event free survival.

So, it took us by surprise when we found ourselves in that all too familiar “space” again; We are back in the battle mode.
No, cancer has not returned. We are making an acquantance with their ugly cousins, the side effects of cancer therapy.

For us, the issue is her lungs. She has has moderate amount of GVHD and Bronchiolitis obliterans has (most likely) reduced her lung function. We were around 50% on FEV1.

Now, it has decreased to 42% range. Maya’s oncologist (our favorite doctor) already has the ball rolling. We must act now! Why?

“Chronic GVHD, which occurs in 30-70% of allogeneic transplant recipients, is the major risk factor. The prognosis is very poor after development of this fixed airway lesion, with a survival rate of 13% at five years”

We are once again, pushed into action. Current thoughts are:

  • We are dealing with some sort of infection. This is unlikely as Maya’s been on anti-viral, antibiotics and anti-fungal. But it could still be some sort of infection.
  • We are dealing with pulmonary fibrosis. PF is not reversible. If we are dealing with PF, the best we can do is not to lose additional lung function. In this scenario, we’d take the 50%.
  • We are dealing with Bronchiolitis Obliterans. There are a couple of options:
  • We treat with SAMS. (Steroids, Azythromycin, Multelukast and Symbicort) There are existing studies in phase II. So, there is some traction here.
  • We treat with Imatinib.

Side effects from Azythromycin and Imatinib are something else. And we are also discussing whether a lung biopsy would be instructive.

I tell myself that we’ve been here before. Many many many times. While we can’t say that it feels comfortable, but all the emotions we feel are all too familiar, all too real.

Is this it? Will we lose her from the complications?
What are we dealing with? We still don’t know. And we still don’t know which direction to take. There are millions of things rushing through our heads and none of the thoughts are comforting.

We push these demons back and focus on Maya and what we need to do. In the mean time, our oncologist has set the wheels in motion.

We are starting a dialog with the surgeon for a lung biopsy. The decision has not been made yet, but we need to be prepared.

And each time Maya coughs, it’s feels like a dagger to our hearts. Push it back! Time to focus!

We’ve been hugging Maya more. We show her how much she means to us. How much she is loved. And this is how we spent the past few days. Worried, hoping for the best, spending time again researching. And it is with hope and reservation that we did another PFT this morning.

The result was astounding. From FEV1 value of 42% a week ago, it’s up to 54%. This value is better than what we were accepting. This is unheard of and definitely unexpected. It has taken a year to get Maya’s lung function to improve just 8%. And over this week, it’s increased 12%.

The week of worries simply evaporated. And we sigh a sigh of relief.

We don’t know what tomorrow will hold. And just as we were getting used to our “brave new world”, cancer and its thug friends threw us a gentle reminder that there are no guaranties in life. Ultimately all we have is now, the confluence point of both the past and the future, which we call the present.

As we peel back the sheaf through the kaleidoscope which we call cancer, we are left with the most important things in life; this mere moment with the ones you love. And that, is all we ever need.

Vaccination Drama

Recently I got into a heated discussion with some folks in the paediatric cancer forum regarding vaccinations. I think a healthy debate is beneficial for everyone who cares to listen. In any argument, the hope is that one can walk away from the debate with a better understanding to make the right choice for themselves as well as others. We all benefit from such a debate!

The issue of vaccination has landed in the same theme park as a religious arguments, climate warming, UFO, big foot etc, and no amount of reason seems to prevail. Regardless of the mountain of evidence that exists on this subject matter, still some view vaccination as evil.

Many people have written about it better than I can ever articulate. So why add to the pile?

Because I want to give a perspective from a pediatric cancer family. Not vaccinating may be harmful to individuals, community and society and possibly deadly for us. Of course, vaccination isn’t without risks. If you are immune compromised, or have other issues that require special attention, it may be wise to consider your options. This fact could not be more clear for us, who have a immune compromised child due to cancer therapies.

In the course of the said argument, I was especially drawn to the social aspect of the issue; One gets vaccinated to not succumb to diseases, but also to help the society at large as well. We all have a social responsibility to ensure that we do not harm others. In my opinion, altruism is part of our genetic makeup. From the social responsibility perspective, it seemed to me that not being vaccinated is akin to drunk driving.

Do all drunk drivers end up killing others? No. Probably only a handful of people end up hurting others. But it is understood that driving under the influence is a bad idea for our society and subsequently we do not allow such behaviors. The risk is substantial enough that we do not allow drunk drivers to get behind the wheel.

So, why is it that some of us, including some in the pediatric cancer circle, think that it is OK not to vaccinate? Some arguments I’ve heard are:

  • It’s a personal choice.
  • vaccines have poisons in them. Mercury, formaldehyde and Adjuvant are very unhealthy for people.
  • We have had horrible reactions to it.
  • There is a conspiracy to harm people through vaccination

If we translate some of these arguments into a drunk driving scenario, one can immediately see the failures of this line of thinking.

  • It’s my personal choice to drive drunk.
  • I had a horrible experience by not driving home drunk. I don’t know where I ended up.
  • There is a conspiracy for cash grab by the government.
  • I’m fine even if I have a few drinks.

There are genuine cases when vaccination may not be right for you. One of them is if one does not have a good immune system. In such a case, vaccination is not something that should be considered. But such a consideration should be made in conjunction with your doctor.

Moreover, there is a difference between getting the primary vaccines over flu vaccines. The primary vaccines which we get for diptheria,Tetanus,Rubella, Polio, etc saves lives and horrible consequences of the disease. Flu vaccines are more to protect you from unnecessary down time. Does it work always, no. But generally it is a good idea, although for most people, it is not deadly to not get the flu vaccines.

Notwithstanding a handful of acceptable reasons, if you do not believe in vaccination, all I can say is that you are prejudiced and put others in danger; prejudiced because because the opposing arguments flys against the substantial evidence. It is also very dangerous for those like us, who have been immune compromised for years.

What is incomprehensible for me is this:

  • 1 / 1,000,000 dose of vaccine results in 1 person being compensated. (We can say that one person either died or became seriously ill. Those who suffered as the result of vaccines, most were elderly with weak immune system)
  • 2 / 10,000 children under 5 will get cancer from CT scans.
  • 2 – 3 / 100 pediatric cancer patient will get secondary malignancy from the cancer therapy.

Huge frustration that the paediatric cancer families often deal with is the lack of concrete data. We are often left to make decisions without any form of data to back our decisions. We make life and death decisions not based on facts, but gut feel. Will this clinical trial work? Will we have to deal with severe adverse reactions?, are but two of the questions we deal with on a regular basis. So when we are presented with concrete and credible information, it should be a no brainer.

Except it isn’t. I fail to understand.

  • Why would you not vaccinate your children? (outside being immune compromised and with the consent of your oncology team)
  • Why would you be OK to give chemo or radiation to your children when the chances of these therapies having severe adverse effect is so much higher?
  • Why is it OK shirk your social responsibility?

I shudder at the thought of having survived two cancers, and having Maya exposed unnecessarily to other infectious diseases. It took all we had to keep Maya alive. Even then, the ripple effects of cancer just about destroyed everything it could touch in our lives. Everything!

Why would you insist on not getting vaccinated when it could potentially harm others? Why is your right not to vaccinate more important than my right not to be sick or die from your decision? Drunk driving is not acceptable. It destroys lives, just as much as not vaccinating you and yours.

I welcome your input from anti-vaxxers. Help me understand why you won’t vaccinate? And by the way, do you think drunk driving is OK?

PS: According to the WHO link below. 1.5 Million children died from vaccine preventable death in 2008 alone, against 1 / 1,000,000 death due to vaccine.

sources:

http://www.ncbi.nlm.nih.gov/pubmed/23790993
http://www.who.int/gho/immunization/en/
http://www.hrsa.gov/vaccinecompensation/data.html
http://healthimpactnews.com/…/zero-u-s-measles-deaths-in-1…/

Shell Shock

The soldiers were hugging the walls in the trenches. The attack had begun. The bombs were going off all around them. Anyone who could muster even false bravado to rush out from the trenches were cut down like they never mattered. I guess they never did matter much. The old vets who’s been around these offences enough times knew better. Yes… here we go again. We just need to hunker down. The bombs will start the offensive. May be there will be some mustard gas. Did I clean out the canister the last time? Better hope so. Might regret later. If you don’t get too crazy, you’ll be OK. Hunker down and don’t be a hero.

The german foot soldiers will rush the line. Hope they won’t get to the trenches. If they do, that’s going to be bad. Soon enough, there will be blood. Lots and lots of blood. Limbs will liter the battle field, mingled with blood, urine and shit. That’s not so bad, until the bodies start to decompose. Yes, we’ll lose some good men now. Will it be Rob over there? Or may be it’s Sali over there. May be it’ll be s my turn this time. If it’s time, it’s time. There is no rhyme or reason. That’s just the way it is.

There is nothing scarier than the quiet that follows the bombing. What will it be next? Will it be the tanks? Will it be the gas? Or will it be the foot soldiers rushing towards the trenches?  You know, the funny thing is you often notice the stupidest thing when you’re worked up.  Me, I feel my lower lip tremble, when we get to this place.  Oh… and the ache … the adrenalyn ache.  Still, the thoughts run amok. How many tours so far?

blink…. blink…. thump-thump… thump thump.

Has it sunk in? What do you mean?

“Oh try the antipasto. They’re to die for” [non descript laugher]

“Did you hear about those sightings of Rob Ford on the subway?”

“So and So, lost 50 lbs”

“So and So posted a picture of their dinner. It looked yummy”.

What the fuck are you talking about? But…. but the germans. They’re still there. They’re just hiding. They can rush the line any moment now. We need more ammo. Where are the back ups? They are still there!!! You’re wrong. They’re still there!

I need the kevlar. I need the rations. What are you’re talking about losing weight? Are you mental?

“Where did you go for the summer vacation?”

“Did you see Kim Kardashian’s ass?”

“Did you know Prince Harry was in Memphis?”

Whaaa???

Even if we got back home, we can never talk about Kim Kardashian’s ass. I’ll need at least my side arm. What do you mean it’s illegal?

What do we do now?  What do you mean relax?  I know what it means but what do you mean relax?

But… But…

Ah….

Letter

Dear XXX,

I am so sorry to hear about your troubles.   You have tough times ahead of you.  I guess the first thing to do is look at clinical trials.gov
You can use the above link as the first step.
To answer YYY’s opening questions:
What we have done is simply do lots of google searches.  As we find out more about the disease, certain persons and institutions keep on popping up. In other words, those who are active in a specific area will publish more papers.  I feel it is important to stick to scientific papers and reputable hospitals in the US. There are too many “snake oils” out there and the common theme are, they discount conventional therapy and that they talk about miraculous results.
For example, when we found out that my daughter developed secondary cancer, we started to look up MDS.  A lot of the papers were from U of San Fran and St. Judes in Memphis.
Once we found out about these places, we approached our oncologists at home for referral.  While it is preferable that you go through the oncologist, it is not absolutely necessary.   We found a clinical trial in Michigan (Heleln Vos Centre)  just by researching.  I sent an email to the doctor (Dr. Sholler) and she responded.  Of course, not all doctors will respond to you and somehow you just have to be at it.
We are presently in Memphis, TN at St. Jude through the referral of our oncologist.  When we were discussing my daughters malignancies with the team at Toronto, we asked specifically for St. Jude because through our research, we knew that St. Jude was very active in blood disorders.
Another source for you may be forums.  There are forums / social networks out there that you can tap into.  From there, you can ask the members and see what could be available to you. There are for example,a lot of groups in Facebook that may be able to provide information and support.
WRT to funding, that’s a tough one.  Simply put, you are most likely going to be on your own.
  • What you are getting in Canada is not working, I am guessing, because you are looking for alternatives.
  • Generally speaking, what is available in Canada is available in USA.
  • What is available in US more than Canada are Clinical Trials.
  • Ontario ministry of health will not pay for clinical trials, in general.  You must be prepared to pay out of pocket.  You can however, make a request, which they’ll likely deny.  Then, you have to fight it.  I do know of families who fought and got results.  It did involve hiring a lawyer (or finding one that will represent you pro-bono)
Now, it does sound grim and in some ways and it is.  However,it is not altogether without hope.  What we found in US was significantly better than in Canada.  I do need to be careful here in saying that what we have in Canada is not worse, in terms of the numbers / statistics.  But the system here in US seems to be more motivated in supporting the patient. So, in that sense, it is better.  We were getting desperate with my daughter and her prognosis.  When we got to US, the doctors here, gave us hope.  In the words of Dr. G. Sholler, “Oh you still have lots of options” is what I recall. So, don’t lose hope!
My sentiment:
Please look for oncologists who are personally vested in the patients.  That will make a night and day difference in the potential outcome.  I believe without a doubt that the oncologist who got us to St.Jude has given Maya a real fighting chance at life.  Nothing is for certain, but I suspect, as well as our doctor has suspected that Maya might not have survived the treatment that was available to us in Toronto.  In her words, “If it was my child, I would take her to St. Jude”
Secondly, the bottom line is, Medicine does not understand cancer.  While they have some ideas, they don’t know either.  So, you must stand up and fight for life.  If medicine understood cancer, not so many people would be dying, or suffer through the brutalities of therapy, some for the rest of their lives.  So, fight!!!  It’s your right !  And in saying that, I am also saying that you need support.  This event in your life will be one of the most challenging thing you’ll have to do and will define you in so many ways.  You can’t do it alone.
Now finally, I say this.  If it was me who ended up with cancer, I would not start with the conventional therapy.  What I would do is the following:
  • Change my diet completely to live, vegan diet.
  • Juice like crazy.
  • No sugar, carbs, meat.
  • heavy cannabis therapy. Yes pot, in the oil form.
    • Cannabis is shown to kill cancer cells through apoptotic pathway. Medicine is starting to realize that in fact that it has efficacies with cancer.  There are clinical trials that are being conducted now.
    • Here is a link to NIH on MJ.
    • Cannabis is suspected of slowing down or stopping metastasis.
    • It also has antiangeogenic properties. (Formation of blood vessels, which is required for tumor growth)
  • Follow up with multi-modal therapy with either radiation, chemotherapy and Cannabis.  Unlike some who only swears by THC/CBD therapy, and results can be spectacular, I don’t believe it alone can do the job.  I’ve seen kids die, even with this therapy.
This is what I would do.  I am not suggesting that you do this.  However, I strongly recommend you do the research.  And there are a lot of facebook groups (albeit, private in many cases) who can help you with this too.
I know there is a lot here, all which are tips of ice burgs.
Let me know if you have any questions.  Minimally, we understand what you are going through.
FYI, I will be posting this letter on our blog, with your particulars removed.
Very Best Regards and in Health,
Kirby

St Jude Summary

St. Judes is a world class research Hospital.  Dr. Tal Schechter-FinkelStein, our BMT doctor in Toronto went out of her way to get Maya down to St. Judes.  And gosh, she really went out of her way!  We’ve just returned from our initial consultation.  We’ve had a battery of tests and had the opportunity to meet with everyone who will be involved in our care.  Three of the doctors we’ve met are Dr. Brandon Triplett (Chief Investigator), Dr. Momcarz (fellow) and Dr. Pai (Radonc).

Dr Triplett

There are three main factors that have overall outcome; Disease Burden, GVHD and Relapse.

Disease Burden:

Smaller the burden going into BMT, better the outcome.  It’s simple as that.  Matter of fact, some patients are in complete remission and they still undergo the therapy.

GVHD

Graft Vs Host Disease is a man made disease and come about as a result of the allogenic Translplant.  Namely, putting in the donor’s blood into a patient causes the recipients body to violently object to the process.  The donor’s blood and the recipients blood go to war with each other.  If an acute GVHD develops, it is fatal.  Until a few years ago, GVHD took up approx. 1/2 of the “Non Relapse Mortality”.  The other common complications are due to infections.

GVHD is all about naive NK-Cells and the fine balance thereof.   To a large extent,  we need the selective NK-Cell functions.

  • donor NK-cells should not attach the recipients tissues.  (GVHD)
  • donor NK-cells should attack recipients blood products.  (GVTE, Graft Vs. Tumor Effect)  This is the part that you do want.  We want the donor T-cells to destroy the recipients blood component including the cancerous cells.

Relapse

With blood cancer, relapse is a big deal.  You need to get rid of all the cancerous cells.  Simply relying on the chemo does not work well.  Hence, autologous transplant is not an ideal therapy.  You really need the graft vs. tumor effect.  The donor blood cells, once grafted, will seek out and destroy the cancerous cells in Maya’s body.

And this is where the balancing act comes in.

  • NK Cells cause GVHD.  But, it’s the naive NK cells that are the culprit.  Naive NK cells are those cells that have not been activated.  That is, “called” to battle.
  • So, NK cells are severly reduced from the transplant.  Approximately 1/1000 th will make it to the host.
  • In order to reduce GVHD, Total Limph Node irradiation (TLI) is performed as well.  We don’t want the “nuclear bomb” to go off inside maya.  Even with such reduction, GVHD can still occur.  However, GVHD at St. Judes is in the 5% range, as opposed to 20 – 65% reported prior to these two adjustments.
  • Since you reduce the NK population as well as have a limited number of T and B cells, you are open to infections.  You are likely to get viral, bacterial and fungal infections.    And until the stem cells graft, which typically takes 10 – 20 days or so, you are severely immune compromised.
  • The “study” part of the treatment is that within these parameters, the doctors will add NK cells at some point to see if that has any positive affect.

Yes, the therapy is tough.  And yes, there is mortality associated with the therapy.   The big concern with Maya is that she’s been heavily treated.  So, in this sense, it’s not certain how Maya will respond to the therapy.  That’s part of the reason why St. Judes takes Maya’s overall condition under consideration.  Dr. Triplett has turned down patients, because he did not feel that the therapy may benefit the patient.  In other words, as difficult as it may be, he has turned down patients because he felt that the patient was strong enough to survive the therapy.  Thanksfully, Maya is not in that category.

St. Judes also has a set of guidelines.  For example, if the rate of Acute GVHD is greater than 10 %, St. Judes will shutdown the study.  Also, if Non Relapse Mortality rate is greater than 15%, St Judes will also shut the study down.  In other words, St. Judes Guideline is that if they are losing roughly 1/4 of the subjects, the study will be shutdown.  The fact that the study is open and recruiting candidates, implies that the mortality rate is lower than 25%.  So far, in this particular study, they’ve done well.  There were 8 patients so far, and although not discussed in detail, it seemed that all of the patients have survived thus far.

Although this study is relatively new, the “back-bone” therapy has not changed in 10+ years. That is, the use of KIR mismatched, haplo transplant.  Each new study has been a progressive refinement of the initial idea.  So, while one can’t rely on the statistical measures here, the overall difference would not be significantly different.

Dr. Pai

Dr. Pai is a Radiation oncologist.  In this study, part of the protocol is a Total Lymphoid Irradiation (TLI).  It used to be that the protocol used to involve total body irradiation (TBI).  However, TBI did not increase the overall survival (OS).  Hence, TLI came about.  The objective of the TLI is not to kill the cancer cells, but rather, to immune suppress the patient further.  The suppression in turn will help with the grafting and subsequently with relapse. The overall numbers were impressive.

In terms of dealing with GVHD in the 50 – 65% range, now, Acute GVHD occurs in less than 5% of the patient. And overall side effect were all temporal and not burdensome, because the overall amount of radiation is significantly less.

With our consultations,  I felt much better about heading into this therapy.  Would I choose to walk through these gates, no.  Will it be fraught with difficulties and challenges, absolutely.  Is there a significant chance that Maya succumb to therapy?  Yes.   But… it really is the best option for us now.

  • Will Maya develop GVHD?  How will I deal with this potential outcome?
  • Will Maya graft? If so, how long?
  • How much discomfort will Maya have to endure?
  • How much additional damage will we done to Maya?
  • Will we all come home?

These are not easy questions to entertain.  But, it is with hope we proceed.

Often, I will take a giant step back, insofar as I am capable of it, and take a look at ourselves as well as those around us.  Yes the medical science is severly wanting.  We are lead down a path that is so difficult to walk.  Sadly, that will not change anytime soon.

What I do see is the “true color” of human nature. I see it from our neighbor who so kindly shovels our walkway or makes us dinner on the night that we returned from St. Judes.  I see it from the teachers at Maya’s school.  I see it from other (NB) parents, who always keeps an eye out for us.   I see it from our colleagues at work.

But mostly, I see it in my little daughter’s eyes.  She is the epitome of “Joi de vivre”.  She celebrates life each and every moment of her day.  Whether she lives another year, or another 80 years, I don’t think it matters as much as how she lives it.   Her joy comes from her inner self.  It really has so very little to do with us, the parents. If there is small credit that we might take as her parents, it is that we did not cover or smother her light.

Pokies Suck!

M:  I don’t want another pokie, daddy.  I already had 4 yesterday, and 2 finger pokes today.

K: I know that Maya.  We dont’ want to give you pokes, but we have to take blood samples to see what’s going on inside?

M: Why do I have to get pokes all the time?  I don’t have cancer anymore.

K:  Well Maya, you are still very sick.  You know, if I could take the pokies for you, I would do it in an instant.  But, I can’t.

M: I know that.  You tell me that all the time.

K: That’s because it is true.  You know I got in trouble with the Doctor today, because I told them no pokie today.  They wanted to do another poke.  And I also told you today that tomorrow, you will likely have to do a poke.

M: I am scared.  Doctors are humorless people and they’re boring.

K: Who told you that?

M: I don’t know…

K: And when you hurt, Mommy and Daddy hurt too.

M: Well, not literally.

K: Yeah OK.  But it hurts us to see you hurt.  Do you like it when Mommy cries?

M: No.

K: Well, I don’t either. I don’t like to see you cry either.  And when you do, it hurts mommy and daddy.

K: So, this is what I think.  I think we should put in a line.

M: Noooooo…

K: Just listen. If we put in a line, then you won’t have to be poked all the time. And because there is a little cup under the skin, so the nurses won’t miss.   And there are certain things you dont’ get to decide Maya  because you’re still very young.   It means you get only 1 poke when we get chemo and that’s it.  But tomorrow, I think this is what we should do. Firstly, we’ll see if we can get blood return on the P(eripheral) IV.  If we do, then no poke.  It”ll probably not work, right, because it didn’t work today.  That’s why we did the finger pokes. I think we should put in a butterfly at the bend of your arm.

M:  Noooooo it hurts!

K: I know.  But, you don’t have good veins Maya.  And the nurses miss all the time.  I know that the bend of the arm hurst more, but it’s only one poke.  And it’s less likely that we’ll have to poke you again and again.  But I’ll let you decide that.  We can let Rita (RN) take a look tomorrow, and if you want it somewhere else, that’s ok with me.  But you have to remember that if we go to your hand, they might miss.  At the crook of the arm, because the vein there is large, they’re not likely going to miss.  And most likely we’ll be able to use that line for the rest of the week.

M: I don’t want any more pokies.

K: I know Maya.  And I wish I could take the pokies…  So that’s what we’ll do tomorrow OK?  And Daddy will come to the hospital and make sure you’re ok and help you through it OK?

M: Ok…

 

The nurse missed the vein at the crook of Maya’s arm.  Tried digging for the vein four times before giving up.  We ended up getting a line put in on the top of Maya’s hand.

Treading water below the water line

is what it seems like at times with cancer.   And the little piranhas (chemo) are forever nipping at you making you slowly bleed, while the people on the boat are yelling procedures in german.  You actually begin to understand what they’re saying.  (Sie denken es ist lustig?) They mean well.

But first things first.  You need to exert certain amount of energy to take a big breath.  Then, you may have a moment to ponder about the pirhanas or the fact that you might be getting tired or that the blood loss may catch up at some point.  All these points, are academic in this place you are in.  Time for another breath.  Huuup!!!

I dont’ know if I am losing my mind.  Nothing seems to make sense, while questions just seem to pile on and on.  The irony is, those people on the boat are saying, “You guys are doing a great job treading water!”   None of these germans know how to swim either.  Although some are just lovely human beings.

 

Maya relapsed.  MDS is back.  The people on the deck of the boat are mobilizing.