It’s the End of the World, As We Know It

It’s T-0.  For nine days, we were “conditioned”.  That simply means that Maya was given sufficient amount of chemo to ready her for the Transplant.  Conditioning included:

  • Total Lymphnode Irradition.  (TLI)  The raditiona therapy targetted the thymus and the spleen area.  These two areas are where the T-cells hang out. T-cells also cause GVHD. Hence, compromising these area means that the chances of developing an acute GVHD is lessened.
  • Various chemo to compromise Maya’s bone marrow.

Our protocol is such that the bone marrow is not completely wiped out.  Effectively it means Maya did not receive brutal doses of chemo.  Matter of fact, Maya tolerated the chemo rather well.  That is, Maya was only completely knocked out for 1 day and felt under the weather for a couple more days.  Over all,  it has not been devastating as we expected it to be.   Both Indira and I feel that all the prayers and chants that have been pouring in from all over the world has had a very positive effect on Maya.  For that we are grateful.  Thank you all.

Of course, tough days are still ahead of us.  But everyone here is pleasantly surprised with how well Maya is doing.

Transplant is taking place now.  Yesterday at T-0 was the first transfusion.  The photos from T-0 are here.  Watching my stem cells being transfused into my daughter was one of the most significant events in my life.  It was right up there with watching my children being born.  One could not possibly put to words the emotions that was running through my head.  On one hand, I was very happy that I was actively participating in Maya’s well being.  All parents can understand that.  On the other hand, the cells that were dripping into her could kill her.  The fear was also brimming over as well.  Soon enough, my cells will go to war with Maya’s body.  GVHD is a fearful thing.  Fear and happiness collided in me that could not be contained.  I had a good cry.

Thankfully, absolutely nothing happened.  Now, all we can do is wait.  We wait for that magic word, engraftment.  Until then, we can practice some stoicism and be there for our daughter.  And in so many ways, our daughter is your daughter, who through technology and advances in medicine, we were able to share our story.

There are two stories here I think.  There is the story of a girl and her family who were put in a tremendously difficult place in life.  The pain and suffering endured by this little girl is a reminder that we have yet so far to go until no child  endures what Maya has endured.  It’s a very sad story all too easy to become overwhelmed.  And we are overwhelmed.

But the dominant story I think is about a girl who can still smile and laugh even in the face of these difficulties.  It speaks to me about the miracle that is us.  It shows me that no matter how difficult life can be, it’s possible to laugh, love and live the best we can.  I am often ashamed of myself in comparison to my daughter.  It is also the story about a community that has taken this very special girl into their heart.  It’s also about you who decided to support this girl and her family.  The goodness in  human heart has never been made so clear.

Today, is the end of the world as we know it.  It’s Maya’s second birthday.  One of the compassionate nurse here at St. Jude has made Maya a birthday card.  It is a new begining.  Maya and I now share the same blood which is made with love from me, and supported by the greater community that is you.  How can we ever thank you for your support?

Tougher days are ahead of us.  That is certain.  The ending of this story is not yet written.  The ending may be days from now, months from now, or many many years from now.  But we have taken our first step today.  And I can’t imagine taking our first steps without all of you.

Very Gratefully,

The Kim Family.

 

This is Life

Part of the protocol we are on is the stem cell collection from a donor to be used in the bone marrow transplant. That donor is me.  You can see the schedule here.

Preparation starts T-5, where I am injected GCSF, which stimulates my bone marrow to generate more stem cells. These stem cells are collected at T-1 and T – 0, where it is injected into Maya. She will fight the cells.  And we will have fevers to deal with.  We will also have to be very careful with GVHD.  Some additional photos are here.

DSC_8195A wonderful nurse here at St. Jude prepared me for what was to come. She compared the effects of GCSF to giving birth, in terms of pain it could cause. “Dont be a macho man. Get the pain killers because you’re going to need it.” She had first hand experience. It feels like a bad flu, and some feel the pain more than the others, I was told.

I had advil and tylenol with codine. Alright. We’re good. And yup. It felt like I had a bad case of the flu, body achy and my bones hurt. But, so far so good. Nothing I can’t handle. And of course, there is the notion of doing this for Maya. This is the first time in the past four years, where I can actively contribute to the wellbeing of my child. It hurts, but it felt good. The caveman in me who wanted so badly to protect my child was happy in pain! I would do this thousand times over. I even told a very good friend from South Africa that it wasn’t so bad, I can handle this and we were good.

Of course, that was the universal trigger to bring on the pain. Oh boy… At T-2, the pain started. I hurt everywhere. Every bone in my body seem to rebel against the artificial urging of the production of stem cells. The general pain was punctuated by sharp shooting pain as well. I could only guess that these sharp pains were the result of colonal masses leaving the bone in to the peripheral blood system. In terms of pain, yes, it’s right up there with any that I have felt in my life. While I have never broken any bone in my body – though I’ve come close in a couple of occassions – I imagine it wouldn’t be too different from what I was feeling then. I did load up on the tylenol but it was not enough. I also felt nauseous… because I took too many too soon. So I grunted the entire night in pain. But, in some romantic notion, I suffered for Maya. Yes, I would do this a thousand times over for my children, though I am not saying we need to test this statement out.
And in the morning, the pain just disappeared. This morning (T-1) I took a short walk over to the donor room where I was hooked up to an apheresis machine. It’s like a dialysis machine, where the blood is drawn from me, the stem cells harvested and the rest of the blood returned. The funny thing is, I felt woozy because of the caltrate that is added to the returning blood. It also made my finger tips and my lips tingle. Caltrate is used in the anticoagulant while being processed. A while back when Maya had the same procedure, I was stumped on how they’d separate the stem cells from the rest of the blood product. It turns out it’s obtusely simply; they just spin it to separate out the blood component based on the specific gravity of the parts.

Any ways, I am happy to be so actively participating in Maya’s therapy. In blood, she is me. This will never be more true after our therapy here at St. Jude. We will share the same blood.  A father and his child will never be more intimately connected, in some ways. I am grateful that the technology exists to allow a life to be saved in such a way.

I am very happy

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

We are in this Together

Here we go…We are finally admitted.  This is the reason that brought us here, albeit it was against the odds and took a bit of doing.  The bone marrow transplant unit is nice.  The patient unit consists of the room for the patient, bathroom for the patient and an adjoining parent room with a separate bathroom.  Pics are coming.

When we went through the first transplant, we were ignorant of the procedure.  Yes, of course, intellectually we understood what was to happen. But there is nothing like experiencing it to fill in the gaps.  Almost three years have passed since we were in transplant.  Somehow, even with our apriori knowledge, our lead feets got us to the hospital and to the BMT unit; the difference between the heart and the mind.

The cobwebs are being taken down.  Already, I must have washed my hands at least ten times within the first two hours.  From now on, there will be endless number of hand washing. Tonight will be the last time that I can kiss my child or even touch her, hopefully for the next 30 to 40 days.

We also know that time will cease to exist in ways we normally understand them.  Nights and days will cease to have meaning.  Days will be blurred. There will only be the the gremlins – the side effects of chemo – and blood;  My blood.  The blood that will bring her back.  Even so, there will be other pitfalls, such as Host Vs. Graph Disease and infections. And we will focus on one word that will mean everything; engraftment.  And at that point, we will have our daughter back from the perils of the therapy.

We are at T-10.   We are in this together, Maya, Indira, Taylor and I.  We do this for Maya,  because she is our daughter, and a sister and because she is loved.   We are also our families who are supporting us.  We are friends as far as South America, South Africa and Europe. We are neighbors who care about this very special girl.  We are the community, school friends, teachers who support us in ways that humbles and touches us.

We do this together for Maya Kim.  Because, after all, she is worth it!  Because we are blessed to live in a part of the world that treasures life. We are grateful for her.

On St. Jude

We’ve been here two weeks in total now; one week for consultation in December and now a week preparing for the Bone Marrow Transplant.  Two weeks is certainly enough time to form an opinion. And my opinion is that St. Jude is an outstanding organization.  As our BMT doctor in Toronto has said, for Maya, it is the best place to be.

So, why do I think St. Judes is such a great place?  Simply put, it has a culture of excellence.  Everyon can talk about this “culture of excellence”.  And often, organizations will say that they have it and explain what excellence means.  You can talk about it, but it’s not something that you can just talk about.  If you have it, you feel it. For me, I’ve felt it over and over, everywhere.

Everyone is passionate about their work and it shows.  This passion is evident from the night watch person at the Grizzlies house, to cleaning staff, to nurses, social workers, Child life specialists to, lab techs to doctors. You see it everywhere and often it’s in the little things that’s visible.  Here are some examples:

  1. You are lost and you are looking around.  It won’t be more than mere seconds before someone will ask if we need help.  And again, message is the same.  “We ‘re here for you!”. Their passion comes across.
  2. They have red wagons (those radio flyers) for the family.  So what?  Well, someone thought about it, someone else heard the message and collectively made it happen.  Look, St. Jude is also a huge monolithic organization. We all have experiences on how slowly things move and how easily things slip through the cracks.  And we’re not talking about some multi-million dollar equipment.  It’s a wagon!  If you spend that much effort on the little things, one might expect that the organization will put more efforts with more serious issues. And St. Judes do!
  3. They have Vallet parking.  Why ?  Patients and the families here have serious problems.  And especially during the summer months when it is unbearably hot, trying to get the patient to their appoinments can be challenging.  So, they have vallet service.
  4. Death is not hidden.  St. Judes is a research hospital. And by definition, those with the most grave disorders come here. Some die.  It’s not a failure on St. Judes.  It’s a reflection on the gravity of the work that’s done.  So, they do not hide it, but honor them by putting memoriums in the most conspicuous path leading up to the front entrance.
  5. Schedules are often juggled around to accomodate the patients.  It was surprising for the first few times.  “Oh, we can change that…. “.   “huuuuuh?”
  6. Nurses and doctors here are as competant as any others we’ve seen.  Since we have not had too much interactions yet, I can’t make too much on that.  What I can say though is that they seem to have this air of confidence that make me feel at ease.

Housing:

The way it works here is like this:

Grizzlies House
Anyone who’s stay is typically less than 1 week are put in the “Grizzlies House”  It’s more like a hotel.  The rooms are smaller and there is no kitchen. You are also given daily stipend for food. 10 dollars for breakfast, 10 for lunch and 12 for dinner.  Initially we thought, well that’s not too much but what ever.  But food here is cheaper than Toronto and it’s enough to cover a good portion of the food.

Ronald MacDonald’s House:

Anyone who’s stay is between 1 week to three months are put in the Ronald MacDonald’s house”

Target House:
Those who’s stay is longer than three months are put in the Target house.  Target House is gorgeous. When we finally got here, we were surprised on how beautiful it was.  Here, you get a weekly stipend of 100 dollars for groceries.   Since this house is few miles from the hospital, there is a shuttle bus that runs on a regular schedule.

We have a small two bedroom apartment that was assigned to us today. Yaaaay!!!  We can cook now.  Living off restaraunt food gets tiresome very quickly and it was just very nice to be able to cook a couple of simple things for dinner.  Additionally, although the quality of food at the cafeteria is good, there were a lot of fried food etc.  When I asked if there were any vegetarian options, I was scoffed at. I’ve been living off a vegetarian wrap for the past few days.  I also saw an indian restaraunt two blocks away from the Target house.  Matter of fact, the only indian restaraunt I’ve seen at all.  Enjoying real food for the first time in a week as a definite pleasure.  Maya and Indira enjoyed some rice, with sea weed and some chicken for dinner.

Now, we were supposed to have been admitted past Sunday.  However now, we will not be admitted until coming Monday.  The reason was due to the fact that Infectious Disease panel that was sent out did not come back.  May be it got lost. Since Maya will be severely immune compromised, conditioning will not take place until Maya and I are both cleared from infectious diseases.

I will post some photo’s as soon as I get to.  In the next weeks, we will have a lot of time to sit as we navigate through the treaturous waters of Bone marrow transplant. For now, what I can say is that although this journey has not been easy fraught with pitfalls, we are grateful that we were somehow lucky enough to receive this fighting chance for Maya!  And we proudly and gratefully share our experiences with you.21

In This World that We Live In

 

Here we are…  St Judes is such a lovely facility.  And as far as therapy is concerned, there isn’t another organization that we would be better off.  So, why do I find it so hard to be here?  It’s a rhetorical question.  I can feel the stress hormones coursing through my body and dull  ache has become a familiar companion.  Ice packs have become my bed partner.  Well, time to suck it up!

There is a distasteful irony here that does not go unnoticed.  I have been downplaying the “pokes” Maya has to get. Often I will be overly dramatic when I get poked.  This drama is for Maya so that she sees that pokes are not that big of a deal.  It’s been a hard sell.  Perhaps, I should take my own advise and suck it up as well, just as I’ve been asking Maya to suck it up.  So, time to suck it up. Tougher days are still ahead of us, although the days are coming up at a break neck speed.

Our calendar looks like this:

We will be admitted Sunday night, Jan 12, 2014.  And from that point on, things will get heavy very quickly.  The most critical part of the therapy will be approx 3 – 4 weeks starting Jan 12.   From what I recall, during our first Bone Marrow Transplant, on  T+14, Maya developed H-VOD.   While the “conditioning regiment” (AKA Chemo) is not myeloablative (complete wipeout of Maya’s bone marrow) and while the side effects are not hepatotoxic, we worry about complications.

Some misc information about the therapy are:

  • TLI is really to minimize GVHD.  The dosing is considered minimal and full recovery is expected, albeit it may take up to 3 years or so, to recover fully.  Most of the recovery will take place within the first year after TLI.
  • Conditioning regiment will wipe out most of Maya’s Bone Marrow.  Bone marrow need not be completely wiped out because NK cells will do the “mop-up”, once my stem cells graft.  A minor concern is that the graft may fail.
  • GCSF is a drug that promotes stem cell production in the bone marrow:
    • So, it makes sense to give it to me to increase the production of stem cells in me.
    • It makes sense for Maya to get GCSF, once the stem cells are infused.  My stem cells will migrate to her bone marrow and graft.  Once the graft takes place, she will need to increase the additional stem cell production.

Maya will likely lose her hair.  She will not like that and will have to deal with her image issue.   We did have a discussion about getting a line put in.  Of course, we need the line, as we need to deliver the drugs.  For Maya, it means not getting so many pokes.  She was agreeable, but wanted the line out, as soon as we were finished with the therapy.  She wants the line out, just before we go home. Long enough so as to not incur additional pokes, but short enough that she can carry on some semblance or normalcy.

Again, I ask for your support.  Please say a prayer or chant for my little girl.  Of course, as a parent, we can not but love our daughter. But even through the kaleidoscope of parental devotion and love I must confess that in this world we live in, we need more people like Maya who just by being herself gives so much to those around her.

With Gratitude…