Monday, January 31, Scans this week (BMT + 131)

Lots to update, Maya finished her round of chemo on january 21st, the week was good and normal (normal for our standards :-)) ending with Maya getting a poke on her arm to put in her encephalon to get the daily GCSF injections. That was not fun at all, as usual Maya put on a good fight and her nurse was placed on the I don’t like you section of Maya’s book.

Last week was a bit… a lot tough, we went back to clinic for blood work and a talk with Maya’s oncologist. The discussion was about o our plan with Maya as per Kirby’s blog entry of Jan 24th.  I was going on and on about how amazingly good Maya has been, how much energy she has, and the glimpses of normal life we are having,  and the the phrase “quality of life” was used by Maya’s oncology team.  Yes we all want good quality of life, but when you are dealing with Cancer quality of life is very often used  when things are not looking so good. Maybe I am just imagining things, but this is how I took it and it hit me hard.   It is difficult to correlate the way May is right, good/super good,  now with how sick she is.  If you see her, she is full of life and to me she seems that she is recovering, but in the world of oncology if she did not respond to the main treatment is difficult for her to respond to this chemo.  Now, we don’t know yet how she is responding to this new chemo, and there was nothing else than what we know that the oncology team knew but the phrase hit me  and Kirby very hard.  In Any case, I am NERVOUS, completely NERVOUS as this week Maya has her scans.  MIBG injection on Wednesday and the scan on thursday.

Monday next week she starts what we think is the last round of chemo of irinotecan and temodal and of course we will discuss results of the scans with the doctors…….Please, please  Cancer get the F*#$ out of my daughters beautiful body.  We are ready to fight you, we are so ready to do whatever we can to kick you out.

The initial plan was for Maya to do a scan after the third round of chemo, but there was some confusion and the scan was booked after the second run (as it is usually the case with other kids following this chemo protocol), we asked why, and they said that it was easier for them to book it for next week due to isotopes coming from Vancouver, but that they could try to change it if we disagreed, and that it was merely a  scheduling  convenience , nothing wrong with Maya.

Anyhow…My beautiful daughter has been enjoying life, she continues to thrive, she continues to amaze us with her strenght, her strong will, her curiosity and of course above all she is just a 5 year old, proud 5 year old, as she is now “older” because she “is five” :-). With these chemo she has not become neutropenic and hence we have avoided the emergency trips. Yes it will be 3 months this February second since our last overnight stay at SK…. no we do not miss it at all. We love to sleep in our own beds 🙂

There are a lot of sad news going on the world of neuroblastoma kids, the kids we do not know but whose stories we follow, the kids we know that are not doing so well.  I do not want to go into these details, as I want to block all these from my mind for now. I want to enjoy every single minute with my daughter, not thinking about the what if’s and how similar our lives are to these kids, and how badly we want to stop those similarities.

We are excited looking forward to this weekend as we are going away to enjoy the canadian winter with some ice fishing, tobogganing, skiing and dog sledding.   Maya cannot wait for it.

Thanks to all of you  for your support, your thought, prayers, chants and good enerygy our way.   Please think of Maya this week, we need those scans to show improvement.  And of course think all of these innocent kids and their families who are fighting this monster.

Below are some pictures of the kids, Maya and Taylor watching TV/relaxing one night last week.




Meeting summary with Dr Irwin (Jan 24, 2010)

Today, we had a meeting with our oncologist Dr. Irwin.  It was, in my mind a somber meeting.  Here are the key points of our discussion.  We have a lot of respect for Dr. Irwin.  Her knowledge base is truly astounding.  Unfortunately, the state of affairs WRT to neuroblastoma is a dire one, which no one has solved.  And Dr Irwin presented her reasoned and rational position to us.

I requested the meeting because foremostly, I feel the urgency to do something to give Maya a better chance of beating this disease.

  • Maya has the least amount of disease now since we were diagnosed.
  • Maya was categorized as “partial response”.  She barely made this categorization.
  • Maya never really responded well to chemo both in terms of reducing the disease as well as her sensitivity to chemotherapy.
  • The potential for Maya to respond to additional (milder) chemo seemed to me less likely.  (How will we get Maya to Sloan Kettering, if she does not respond to more chemo?)

Dr Irwin would need to see the data.  She also questioned the need for fresh tissue sample, if the procedure is genetic analysis.  Performing a procedure to get fresh tumor sample is not something that could be easily performed as such a procedure would come with risk.

Even if there are convincing evidence, she would have to pass this info among her colleagues as well as the ethics board to get clearance.

If we did have this information, she is not clear on how this info could be used beneficially.

SN 38 / EZN 2208

There are no open trials for neuroblastoma.


While Dr Irwin did not explicitly say that she opposes this treatment, she did say:

  • No data.  No go. (Her position)
  • Not under double blind study.
  • There was a patient some years ago that tried it, and it did not turn out well.
  • If we are interested in clinical trials, she can facilitate a meeting with Dr. Sylvain Baruchel who is both a clinician as well as a senior researcher. (Director of the New Agents and Innovative Therapies )
  • There are few trials we could possibly participate, when they become available.
  • Dr Irwin will facilitate a meeting with Dr Baruchel in the near future.


  • No clinical trial.  No go.
  • KHK:  There are no clinical trials because DCA is not patentable. No pharma will pay for a clinical trial, if they can not hold the patent.

Dr Irwin’s position was that as a scientist as well as a physician, she can not promote or support therapies that do not have solid data to back up the claims.  It would be unethical to try out on patients therapies without proper data. Whatever therapy she receives, it should be such that the “quality of life” is maintained for Maya.  (Yes, she said it)

Moreover, all trials and therapies that are offered by sick-kids do go through the ethics board and she can not promote/support therapies without proper due process.

I can certainly understand her position.  I believe her position is “right”.

But anectotal evidence does not mean false or wrong. The problem is that there are so many snake oils out there, it’s very difficult to discern what is reasonable and what is total crock.  Moreover, even the studies that get carried out by scientist often are performed incorrectly.  So, even the trials often have to be thrown out or re-analyzed.

And in the mean time, children die.  Keon Richard passed away this past friday.  Keon fought for almost four years and he finally succumbed.  Dear boy…

Does it mean change of plan? No. I am still heading down to Houston to discuss our case with the Burzynski clinic.  We will ask hard questions and see what this Dr Burzynski has to say.

There is an answer out there somewhere.

May the year, 2011 be the defining year for Maya and us as a family unit.

The Plan

As Indira has mentioned, I have been doing some research and have found some interesting stuff.  But, before I get down and dirty with the plan, here’s the current state of affairs.

As you know, Maya has gone through ANBL 0532, although we did not get to the point where we wished to be:

  • 6 rounds of chemo, “Induction phase”.
  • tumor resection
  • bone marrow transplant.
  • radiation:  declined as the risk of severe outcome was unacceptable.
  • immunotherapy:  As we declined radiation therapy, we are not eligible for immunotherapy ch 14.18
  • The latest scans taken mid/late december suggests that while there hasn’t be a marked increase in the tumor, the findings suggest that there are more neuroblastoma activity in her abdomen as well as her femur.

The area of concern for us is what do we do now? And  yes, we do wish to take Maya to Sloan Kettering for their immunotherpy 3F8.  Concerns are:

  • Maya needs to be NED. (Or near NED)  This means we need more chemo to try to reduce the disease burden.
    • Maya is presently on Irenotecan and Tazolomide in hopes that these chemo will reduce the disease.
    • What if these two does not reduce the disease? Presumably we’ll simply move onto other chemo drugs.
  • Immune suppression. If we become NED or near NED and hence qualify for 3F8, Maya will have to recieve high dose chemo to immune suppress her; Most likely cyclophosphamide or carboplatin.
    • This means something like going through BMT for the second time.
    • Need to deal with side effects.  And if we are required to use platinum based chemo, Maya will likely lose her hearing completely.
  • Getting chemo  is a timed event.
    • Chemo causes permanent damage.  Some damage may not show for years.  It could be the endocine system that gets out of whack or it could be neurological damage or it could cause a host of other problems, including secondary cancer.
    • Some will develop chemo-toxicity.  Basically, some parts of body will begin to squawk seriously.
    • And most importantly, exposing cancer to chemo drug inevitably will cause the cancer to mutate and subsequently render chemotherapy useless. To a larger extent, chemo-resistance is similar to anti-biotic resistance in some bacteria, when you do not finish your antibiotic.  Essentially, you’ve isolated the strongest strain of the cells.  It is no wonder that when there is a relapse, it comes back with a vengence!
    • And finally, getting additional therapy at Sloan Kettering is to a larger extent is getting the similar therapy we’ve received thus far.  So then, why would I believe that SK therapy will yield a favorable result?  I don’t.   As Maya says, “It’s the same thing, except they’re different”.  Then again, what can we do?

The right course of action in my opinion, is to try something different.  We think the following course of action makes the most sense for us.

  • Chemotherapy and Radiation therapy still remains as an option.  However, this option is reserved as the last resort.
  • Try something else to see if we can get regression or further reduction of the disease.
  • If all else fails, we fall back to chemotherapy/radiation therapy.  We are no longer under the time pressure to follow the protocol. More over, if our alternative therapy proves to reduce the disease significantly, we may get NED (No evidence of Disease) through radiation therapy.

There is an alternative therapy provided by a Doctor in Houston Texas, Dr. Burzynski.  His approach to treatment can be summarized as follows:

  • First, do no harm.  This is his moto.  I must say, I like this a lot.
  • Dr Burzynski noted that cancer patients are missing quite a bit of peptides in their blood and urine.  Peptide is nothing more than a handful of amino acids. If  you have 2 amino acid bonded together, you have a peptide.  His peptides are called antineoplastin.
  • Cancer is nothing more than “programming” at the cellular level gone awry. Antineoplastin seems to correct this programming error at the genetic level.
  • So, he replaced these peptides through IV and later by pills.
  • He noticed that significant portion of the patients made full recovery or the disease stabilized.
  • He has treated close to 3000 patients with varying degrees of success.
  • Therapy is personalized based on the patients history as well as the results from comprehensive blood tests.   I like this a lot!!!  That is, it’s personalized and there is no second guessing as to whether the treatment will work or not.
  • The patient can still receive other standard therapies (such as chemo or radiation) whilst still on the antineoplastin therapy.

Why does his therapy stand out? This is where things become interesting.

  • Dr Burzynski has been indicted three times to the grand jury by FDA.  However, he was not found guilty of the charges.
  • Matter of fact, FDA is under investigation because there seems to be some concern that FDA acted in unjustly.
  • Since Dr Burzynski, under FDA regulation, is not allowed to administer drugs that are not approved, unless under clinical trial, Dr Burzynski was approved by FDA to run clinical trials in his clinic.  Huuuh???  Here is an interview with Dr Burzynski that I found interesting.
  • Antineoplastin seems to have efficacy across multiple types of cancer.
    • This data seems to suggest that antineoplastins work on some common grounds (pathway) across multiple cancers.
    • However, the latest stats from his clinic only had two children with neuroblastoma.  One child responded completely and the other child was categorized as having stable disease.
    • If I make a leap and assume that antineoplastins work across multiple types of cancer through the same pathway, then the type of cancer is irrelevant.  Then, you can  simply cancel out the type of cancer you are dealing with. Is this sound argument?  It seems reasonable to me. Then again, who can conclusively argue that this approach is wrong?
    • So, I removed the cancer type and arrived at the sample number of approx 1500 patients, which is statistically significant with little margin of error.  Here’s the Excel spread sheet for this.
    • This exercise yielded approximately 40% complete response, 40% stable disease, and 20% disease progression.

These figures are really encouraging because stable disease is not something that is tracked in mainstream oncology.  This is not surprising since chemotherapy tend to yield polarized results;  Either you get in remission and survive, or you die.  There is no in between. And from our perspective, given the choices of living with stable disease or going for the complete cure with high rate of failure, we would always choose to live with cancer.  Dr Burzynski (at least on paper) provides roughly 80% survival rate (albeit you must be on maintenance dose of antineoplastin), which is literally a lot easier to swallow than more chemo, more hair loss, more nausea, toxicity etc.

And again, if antineoplastin does not work, it does not preclude us from going to Sloan Kettering. Since this therapy has very little side effects, we do not have to worry about toxicity or delayed toxicity at a later point.

I shall coin our protocol as MK-001 (why not?):

  • Start Antineoplastin therapy in the next  8-10 weeks.
    • We are in the middle of second cycle or irenotecan and tazolomide.  We will need to do one more cycle (total three cycles) before we go through a new set of tests.
    • After the new set of tests are done, start antineoplastin therapy.  (This gives us time to apply/consult with Houston to find out more about the details of the therapy etc)
    • Going through the the new set of testing will give us the baseline to compare the results at a later point.
    • Ideally, Maya will show additional decrease in her disease.
  • Initial portion of the therapy will require us to be in Houston for 3 – 4 weeks and back home to continue treatment from home.
  • Complete response:
    • Continue with antineoplastin on the maintenance level.
    • Consider 3F8 therapy from Sloan Kettering.
    • Or not.  May be at that point, a simple maintenance doses of antineoplastin will be as effective.
  • Good partial response:
    • Continue with antineoplastin on the maintenance level.
    • Consider radiation therapy if there are only a few spots left.
    • Consider 3F8 therapy from Sloan Kettering.  Or not.
  • Stable disease:
    • Continue with antineoplastins.
    • Radiation therapy or 3F8 therapy will not be  possible.
  • Progressive disease:
    • High tail to Sloan Kettering.  Not much options left at this point.

At this point, the only barrier to Sloan Kettering is the funds.  Going to Houston will drain a portion of the funds which we will require for sloan kettering.

At some point in future, we may also take Maya to China to get stem cell therapy.  Wow…. did George Bush ever messed up over stem cell technology. Stem cell research in China seems very strong.  It is offered in prestigeous hospital, such asNorman Bethune College of medicine. Basically, we know we’ve done some damage to Maya, such as hearing loss and organ damage.  If stem cell therapy can help, we’ll definitely look into it.

I welcome input here.  Any comment on our thinking now would be helpful, even if negative.

Jan 18th Back to Chemo (BMT + 118)

Keon Richards passed away Friday Jan 21, 2011.  Sharon, his mother told me just before Keons’ passing that, to have him on this world for a blink of an eye is worth the loss.  While the Richards family’s loss is devastating for them as well as neuroblastoma families, we are glad that Keon was able to spread so much Joy.  Rest in Peace Keon.  Please say a prayer for Keon and the Richards.  We really need more people like the Richards on  this world.


Yup, We are back at SickKids (as outpatients) this week for Chemo.  Maya is doing round two of Irinotecan and Temadol.

Temadol is administered orally, and thanfully Maya stil has her NG tube, and hence the capsules are dissolved in apple juice and injected in the nose tube.  The nurses do this as they have to gown up to handle and mix these pills.  The hardest part of this is that Maya has to be NPO 3 hours before taking this drug and 1 hour after.  The first day is the hardest, and yesterday Maya was almost losing it because she was so hungry and wanted to eat.  The first day of the cycle is the hardest as we have to go early in the morning to clinic and then Maya has a lot of blood work done, a check up and then wait for blood results before she can take the drugs.

Irinotecan is administered via the IV and runs over 1 hour.   Maya also gets 3 hours of hydration, 1 pre chemo and 2 post chemo.   She also gets Ondasetron, and she got gravol yesterday to prevent nausea.  Today she did not take gravol as in the last round back in December she did not need it and Gravol puts her to sleep and adds to the crankiness.

Today was easier as we arrived at Sick Kids at 1pm and we went straight to the day hospital where they already had a room for Maya and she was hooked up to the IV immediately.   Karen took Maya to the 8th floor where the  cancer day hospital while I went to pick up Temadol from the pharmacy on the main floor.  There is a lot of paper work required for this drug for the in-surance company to cover.  OHIP does not cover these.   It has been a bit painful to deal with the in-surance company, on Friday they told us it was going to be covered, and so when I went to pick up the pills, the bill was $840 for a 1 week supply (5 80mg pills)… very  expensive.  In any case, I called the in-surance company again and they said yes it was covered but for some reason it was not going through the card.  After paying for those I rushed to the 8th floor and found Maya playing with Karen.   These whole incident made me think about the cost of health care.  So far most of the drugs  throughout Maya’s treatment have been covered by our health care or by the hospital studies or by our work’s in-surance.   I said so far because we know that OHIP nor our in-surance company will cover for Maya’s immunotherapy treatment in the States……

So far Maya has been doing great during this cycle and we have not seen any reactions to these drugs yet.   Silly thoughts cross my mind, are these drugs working? why is she so energetic? why is she not throwing up?  and so everynight I cannot fall asleep thinking are these drugs working? Maya has one more cycle of these and then an entire set of tests to assess the efficacy of these drugs.  It terrifies me to think that these are not working. Kirby and I have already been looking on what if scenarios, how to deal with them and what the next steps will be.   Yes, once the kids are out of the protocol is pretty much up to the parents to drive the treatment.   Kirby spends a lot of his time at home researching, reading the latest papers,  looking into additional therapies, calling other hospitals around the world…. we know this is a scary disease, we know that Maya can be good today and NB can attack with vengeance tomorrow…. yes we are aware of this…painfully aware of this.

BUT Today, today  we are good, Maya is good,  she is just a sweet little girl who is the moon, the stars, the sun and the sky for her mom and dad.  Maya has been so good that she went back to her art classes last week.  She loves the classes.  Tomorrow she will be going back to her ballet classes, it is only a 30 minute class but Maya cannot stop talking about it.    I have to say thanks to Art works Art School, and to Body Language Academy of Dance  who were more than happy to take Maya back and accomodate her in the classes.  Yes, it is a bit troublesome as SickKids contacts the schools and letters have to be sent  to all the parents of the other kids in these classes regarding chicken pox or any other infections.  Thanks also to our interlink nurse at Sick Kids who has been so awesome helping us out on these matters.

Time at home has been busy trying to  keep Maya entertained, cooking healthy meals, baking and just enjoying every single minute with our little one.  Maya has been enjoying the outdoors with a few tobogganning outings with her cousin Sebastian.   A lot of playdates with her dear friends Leana and Bridget and her cousins Sebas, Phoenix and Connor.   Maya has been also  babysitting her 6 month old cousin Lily, she likes to think she is babysitting :-), and we have been to Tia Horiana’s house a few times so Maya can do her babysitting job :-).

I wanted to ask if you could please think and say a prayer, chant, send positive energy to Keon, he is also a NB warrior who is not doing very well.  He is at SickKids right now fighting for his life.   And also for beautiful  Paulina who is fighting  lymphoma with all her might.  Paulina keep up the fight, you, Konrad and Karolek are in our thoughts and prayers daily.



This blog posting is about chemo sensitivity tests.  What does this mean?

Here a little background.   Each individual is different.  Never is the difference more pronounced than in cancer treatment.  That is to say, and as mentioned before, cancer is a highly idiocyncratic disease. Same drug may work for one child but not in another.  For that matter, same drug may work on the primary tumor but not on the metastasis.  This is one of the reason why trying to solve cancer is such a hard task.

And in cases such as ours, high risk neuroblastoma, stage IV whole battery of chemo drugs are used to combat cancer where typically 2 or more chemo compounds are adminstered together.  The idea is analogous to using multiple shotgun to ensure  you hit your target.  Now, since cancer is idiocyncratic, presently there is no means of knowing which drugs will work.    This is where chemo sensitivity tests come in.

Basically, you take the sample (biopsy or tumor resection) and try to drugs out. Matter of fact, whether Sick-kids performed the tumor sensitivity was my first question to sick kids when we found out that Maya had cancer.  Sounds simple!

Now, the issues.  Such tests are done in vitro.  In vitro is not In vivo.  Or a petri dish is not a human being.  So, it’s not as easy as taking the sample and pouring some chemo on it. Moreover, often the chemo itself may not be the compound that destroys the cancer; Rather it’s the bi-product of the metabolism that is the effective compound. So clearly, testing in vitro does not provide the desired information.

Also, cancer such as neuroblastoma tend to be very hetrogeneous. This just mean cancer isn’t just one type of cells. So, one kind of chemo may work for some of the cancer, but not all types found in the patient.

Even so, there are a handful of companies that perform the chemo sensitivity tests.   Sick-kids are starting to talk about chemo sensitivity testing and how such a test could be used to save more lives.  It is just at the talking stage.

Recently, I’ve talked to a lab in Germany who do these types of testing.  What’s really neat about this company is that rather than using the cell lines, they actually perform the tests by genetic profiling of the drug-metabolizing genes.  In other words, in principle, in vitro tests **should** be as good.   Of course it is not.   Why?   The genius of the biological machine, under environmental stress will mutate.  This is the reason why the drugs become ineffective after a while.  But even so, using the chemo sensitivity test to drive the therapy is still better than not having it.  Here’s a pdf from bio-focus group. The lab in Germany requires either 20 ml of blood or from fresh tissue sample.

In future where chemo sensitivity becomes part of the protocol, it may be the case that chemotherapy may be more effecatious solely because we understand what type of drugs work better for that patient.  Under such a scenario, we would give the chemo that works the best first, to reduce the tumor as much as possible and go down the chain of drugs that will work best.  This approach may also allow the dosage to decrease and subsequently toxicity may be reduced.

If I knew what (little) I know now when we were first diagnosed….. I wonder.

And Maya turns 5 (BMT + 111)

We are still recovering from the holidays, the week of Dec 20th Maya received chemotherapy at SickKids.  On Dec. 22nd it was Taylor’s 15th birthday.  On Dec 24th, it was Maya’s last day of chemo (cycle 1), we were at SK  until mid afternoon and we then rushed home to get ready to go to my sister’s  house to celebrate Christmas.  We then celebrated Christmas with Kirby’s family.  We gathered at home to celebrate the new year.  Maya had a blast, at midnight she went outside with her primos to light up some fireworks and then she delighted us with a fashion show.   On January 1st, we headed to Kirby’s parents for the traditional Korean New Year celebrations.  The older kids look forward to this day “Sebae”.  On Sabea, children wish their elders (grandparents, auncles, aunts, parents, etc) a happy new year by performing a traditional bow.  The elders reward the kids by giving them money and words of wisdom.   Maya is the youngest on the Kim family side, next in line is Taylor, and then Stephanie and Jonathan who are already in University.  All the kids made plenty of money, including Maya who also performed cute bows.  It was nice to see Maya and her cousins.  She loves them and looks up to them.

After  a little bit of rest I started to prepare for Maya’s fifth birthday on January 5th.   I left the preparations for last minute because I was not sure how Maya was going to react to the last round of chemo, was she going to be neutropenic? were we going to be at the hospital.  Luckily, Maya has been great, no fevers, she recovered quite quickly from the chemo and she was home for her surprised birthday party.  Maya was very excited on the days coming up to her birthday.  She marked each day on a calendar and knew exactly how many more sleeps she had left before the grand day.  She knew something was coming up, as she has been asking for a surprise party but when she asked me I said nooo, we are not having a surprise party and she would smile.  So the day of her royal ball came and it was madness. I was quite nervous as it was the first time having a party at home.  Thankfully, my mother, and my sisters helped.  I took Maya to my sister Horiana’s home (thanks she had to look after her 3 year old, 6 month old and Maya), then I rushed to get ballons, the cake, prepared the food, decorate the house, which i went crazy with ballons.    At 4:30pm Maya’s friends arrived, I hardly was able to pull up my hair to look presentable.  They all hid under a table, and then Maya arrived, even though she suspected it, she was surprised, and got a bit shy.   After a few minutes all the kids were running around having fun. Ariel and a fairy godmother arrived with customes and make up, and a few minutes later, i had princesses and princes running in the house.    Happy Birthday my beautiful Maya, may God give you a lot more years.  We love you so very much.

How is Maya doing?  Maya is doing GREAT, driving us crazy, good crazy.  She is so energetic and active and wants to play 24/7.  She is still in love with the movie Tangled, which we have seen now 3 times at the theater.   Her appetite is back, she is eating lots, no complains of anything, too good to be true.  During the chemo week she had fun as my sister Jen, who was visiting from vancouver, came with us to the hospital a couple of times, and so Maya played and played and played.   We had  a weird episode the second night, when Maya woke up at 2am babbling, and crying histerically, we could not understand what she was saying.  We have never seen her like this, so we called the fellow at SickKids and we were packing up to go to emergency, but after 10 minutes Maya was as if nothing had happened.  In any case, the next morning they scheduled an emergency CT scan of the head.  Happily, nothing showed up, and the episode was attributed to a reaction to irinotecan ( chemo drug).   During the week of chemo Maya was taking ondasetron in the mornings, and Suprax , an antibiotic to prevent diarrhea (also a side effect of irinotecan).  The week after chemo, Maya did have an episode of frequent stools but it went away within one day.   Because she is still recovering from the transplant, Maya had to go back to take GCSF (an injection to stimulate the bone marrow to produce white cells and accelarate recovery from neutropenia after chemo) .  And so December 24th, her last day,  was a bit hectic, before Maya was sent home, they put in an encephalon on her arm ( this is so we do not put a needle in Maya every day), which was painful, and they had to change her nose tube.  Poor Maya was crying and upset, and she did her Maya routine of  ” I do not like you, you are so rude, you are the worst nurse ever” phrases, but the nurse was sooo good, and everything was done in less than 5 minutes.

The week after we went back to the clinic twice, and blood work showed that Maya was recovering nicely, and so by December 31st the GCSF was stopped.  She has not needed any transfusions either.  On Dec. 31st  at the clinic they asked us to come back on January 10th…. whaaat a week without coming to sickkids, are you sure?  it is ok we can come back for blood work, I have no problems, I said.  The nurses laughed and said, Maya is doing well, you do not need to come next week, enjoy Maya’s birthday week and so we did.   Yesterday’s blood work was good, her creatinine is a bit on the high side, so we will continue to work on the drinking.

Yesterday also we were given the go ahead for Maya to go back  to her classes, and so we are going to pick up maybe ballet and arts, something with a small group of kids as Maya is still on high risk for any cold, flu, chicken pox or any infections.   Maya has also been doing some tobogganing, which she loves, and is not afraid at all to go down the hills, she wants to go higher and higher, yes so far 2011 has been good, and we hope that these are signs of Maya getting better, and that her remaining cancer is going away.

I would like to end this by saying a HUGE THANKS to all of my friends, coworkers , neighbours,  family.  Thanks for all your cards and presents and good wishes during the holidays.  We were so very touched by your gestures.  Apologies for not emailing back to say thanks, but as I said at the beggining of this post, we are just recovering from the hectic and wonderful holidays.

Thanks to my friend Andy Chung who took part of the Sears Great Canadian Chill in support of kids with cancer on January 1st.Than

Thanks to Ian Vollrath (Maya’s Godfather) in the UK,  for fundraising for children with Leukemia and for the Maya Kim Fund. Ian will be running the London Marathon on April 17th.  Good Luck Ian, Maya cannot wait to see you in March.


Some pics of Maya’s birthday



At some point during the party, Maya is all happiness


The princesses at the Royal ball


Limbo time