Merry X-mas and a Happy New Year

Merry Christmas everyone. And we would like to wish the best new year ever.  One year ago, the four of us were in Ecuador having the time of our lives.  We were able to visit Indira’s father in Tena.   And we saw much of Ecuador from the oceans, the mountains, the  jungle and the many rivers of Ecuador.  To me, last December will remain a high point of my life because it was the time when seemingly, we had not a care in the world.  I will always remember waking the beach with Maya and Taylor exploring the wonders that were presented before us.  We found strange creatures and marveled at their strangeness.  We often chased little crabs on the beach, sometimes even catching them for closer inspection.  We would catch snakes in the jungle, and Maya was the first in line to take a closer look.  And we tried “chuntacuro”, which are the rhino beetle larvae. I will always remember Maya falling for Ross, a herpetologist who happened to be Tia Jen’s friend.  Had Ross been any less charming, I would have found a shotgun somehow.

And as 2009 closed and 2010 was ushered in,  I was absolutely convinced that 2010 was going to be one of the best years ever.  And in some sense, it has been one of the best ever.  We’ve learnt that kindness is alive in our community, friends, family and even strangers.  I’ve struggled with accepting so much help this year.  I guess this is a good struggle.  Our neighbors, friends and coworkers  have been amazing, from fund raising to providing us with food.  Little thoughtful gestures, such as receiving fresh coffee or lasagna were humbling to say the least.  Algorithmics, my employer has also been very generous and gracious towards the both of us.  And TZC members provided me and my family with the support which at times were desperately needed.  I’ve seen the resilience and the gentle strength in my little girl as well as my wife Indira, that humbled me at times.  And Maya and my relationship remains interesting as ever.  Once in a while, Maya will simply smile at me with her entire being, which fills me with joy.  And I am grateful that we are able to see these beauties that are part of being human.

And paradoxically,  it also has been one of the most challenging year as well. We have shed more tears this year than any other I can remember.  We have had more moments of terror and desperations as well. I look back with a sense of amazement, the events that have taken place. How did we get through that?  Difficulties that we’ve endured seem surreal.  And closely following other families in similar situation with neuroblastoma have been both rewarding as well as terrifying.  And for few, the terror was realized.

As we look toward 2011, we move cautiously forward.  Unlike the last year, I have no sense of what the new year will bring.  We are certain that the new year will have its’ own set of dramas, some terrifying and others very rewarding.  All we can do is hang on and enjoy each day as much as possible.  It’s the only thing we can do.  And really, it’s the only thing we can ever do.

And Maya… our little princess.   She has never been more healthier this year than she is now.  After all, she has come through the high dose chemo, just two months ago.  The past few days have been exceptionally delightful for our little girl.  She really enjoyed Christmas this year.  And she seemed to have cleaned up on presents.  Last year, I might have said something about spoiling Maya.  I can’t seem to find that voice this year. So, we’ve had a nice and quiet Christmas this year and that was just what we needed.

We would like to thank everyone who have thought about our family.  Your help has meant so much to us this year I can hardly articulate our position.

Thank you everyone.

Merry Christmas and Happy New Year.

 

The Kim Family.

MIBG and CT scan results

Dec 16, 2010 CT Chest/Abdomen/Pelvis with Contrast

Radiological Report:

Clinical details:

Stage 4 neuroblastoma for evaluation post bone marrow transplant. Pre next therapy.

Technique:

Axial image through the chest, abdomen and pelvis with coronal and sagittal reformats post intravenous and oral contrast.

Comparison:

A comparison is made with the previous CT scans of Aug 31, 2010 and July 12, 2010.

Findings:

No focal parenchymal lung lesions identified. No pneumothorax or pleural effusions. A right-sided internal jugular line is noted with tip in the right atrium.

As seen previously, there is a residual heterogeneous mass within the right renal bed. Given the loculated nature of the lesion, it is diffiult to precisely assess the size however the current dimensions are approximately 40 mm x 17 mm and previously measuring approximately 38 mm x 18 mm. As before there is encasement of the IVC which demonstrates some luminal narrowing. Similarly, there is encasement of the portosplenic confluence and left renal vein. There is extensive retrocrural and retroperitoneal lymphadenopathy with the largest lympth node in the right regrocrural region (anterioimedial to the 10th right rib), measuring 18mm x 9 mm (previously measuring 15 mm x 9 mm)

A large amount of artifact is generated from the tip of the insitu NG tube and thereby obscuring views however there is no clear evidence of the low density collection superior to the pancreatic neck that was seen on the previous study.

Normal appearance of the liver, gall bladder, spleen (with splenule), pancrease, left adrenal gland and left kidney. NG tube noted with tip in the stomach.

There are multifocal mixed lytic and sclerotic lesions involving the thoracic and lumbar splines with multilevel vertebral body compression fractures but which are not significantly changed from previously. Multiple foci within the bony pelvis are also noted but similarly unchanged.

Conclusion:

Persistent residual disease as described above which, on balance, demonstrates a small increase in tumor volume.

 

Dec 17th, 2010 MN MSS MIBG whold body and Spect

Radiological Report:

As compared to the previous study of Oct 2010 there are, as seen on the posterior view of the chest, essentially the same distribution of disease of the lower thoracic spine and lumbar spine, as seen on the pelvis view. The anterior view of the chest shows too new subtle lesion on the sternum.

The anterior view of the femurs shows subtle new areas of abnormal uptake in the proximal right and left femur.

The anterior view of the pelvis shows a unchanged lesion focal in nature in the right pelvis. There are no new lesion in the skull or upper extremity.

The SPECT image of the abdomen and plevis shows essentially unchanged distribution of focal abnormality mostly on the left side of the spine.

Impression:

There is no evidence of improvement. All previously seen lesion are still visualized ot some extent with greater uptake. The lesion in the femurs and sternum are eith ernew or show significant worsening.

 

Oct 21, 2010 NM MSS MIBG whole body and Spect

Radiological Report

Clinical history:

Age for neuroblastoma, stem cell transplant, planing for radiation therapy, follow-up.

Comparison:

MIBG scan dated Sept 1, 2010

techniques:

Whole body images with the SPECT study over the chest and abdoment were obtained approximately 21 hours after the raiotracer administration

Findings:

The study demonstrate once again multiple foci of increased activity indentified in spine, abdomen, pelvis, and right femur with no significant change compared to the previous study. There is no evidence of new focus of increased activity idenfified to suggest a new metastatic disease.

Impression;

Stable MIBG scan with multiple foci of increased activity idenfified in the spine, abdomen, pelvis, and femur. No evidence of new lesion.

Tuesday December 21 (BMT + 90) – Chemo ….once again

Hello, apologies for not updating the blog in a while, it has been hectic.  Thanks to all of you who have emailed and called to see how we are doing as there was not blog update in a while.

What can I say, our Maya has been driving us crazy :-), in a good way, just running around, playing and more playing, talking and more talking.  Her platelets have recovered as she has not had any platelet transfusions in the last 4 weeks (as a matter of fact no transfusions at all).   Also, Maya is  now 3 monts post transplant!!! which means that we can relax a bit more.  She still cannot go to very crowded places, but she can play with friends.  And playing she has been… Thanks to her friends Bridget, Marley, Leana and Lauren who have come to visit Maya very often and saved us from the boredom at home.   We have taken Maya to the movies twice (weekday – not crowded at all) to see Tangled which she loves and it is driving Karen and I crazy as she only wants to play with the mini rapunzel dolls.  Maya celebrated her 3 months post transplant by going to two birthday parties.  She was sooo excited, she could not eat the entire day waiting to go to one of the parties.

Another piece of good news is that Maya  is back to eating, and eating lots…but only what she likes.   We are weaning her off the NG tube feeds, actually we are now using the NG tube mainly for her meds, which makes our life easier as it would take literally 1 hour to give her one med.  Maya has a beautiful layer of black hair, her eyelashes and her eyebrows are back.   She has not had any more tingling (neuropathic pain) attacks in the last few weeks, and so we are weaning her off the gabapentin as well.  In fact the only meds she is taking is Septra (prevents pneumonia), and gabapenting (for neuropathic pain), and of course the tons of naturopathic  and homeopathic supplements.  In all it has been a hectic but amazing time at home, spending time with the kids.   Yes, we do get glimpses of a normal life at home, until we go to clinic that is…..

Yes, we have been home since November 2nd, but we have had visits to the clinic 2-3 times a week for checkups.   Maya has been recovering nicely from the transplant.   Last week was a busy week with lots of tests to get a new baseline of Maya and the cancer.   Maya had bone marrow aspirates and a biopsy… she is a pro on this now.  CT scans, MIBG injection, MIBG scan, echo, ecg, etc.   Yesterday, she had the dreaded GFAR (kidney test) where they have to poke Maya to inject a radioactive liquid, and it was not pretty, she screamed, and screamed and screamed, but after the needle went in she was a pro.

Yesterday was a busy day for us, Kirby, Karen, Maya and i went to clinic nice and early.   Maya had the regular blood work done and check up and Kirby and I met with Maya’s oncologist to review the results of the tests and talk about chemo.  Good news, the bone marrow aspirations and biopsies came back negative ( they have been negative since round two of chemo).  Then we talked about the MIBG and CT scans… ahhh they are still the same, same as pre-transplant, and the first MIBG done after pos-transplant, NO CHANGE.   I was hoping so hard for the scans to show less disease….

The plan is to try to reduce Maya’s cancer ( chemo, MIBG) and then get 3F8 at Sloan Kettering.   So Maya started on two new chemo drugs yesterday  Irinotecan (IV form) and Temozolomide (pills).  It will be 5 days of chemo, 2-3 weeks rest and then 5 days of chemo again.  After 3 cycles an MIBG scan will be done to see how the cancer is reacting.  For this treatments Maya is an outpatient.  We go to clinic, register, Maya is given a room,   Maya takes Temozolomide, which is mixed with juice and given through her NG tube (thankfully as cannot imagine giving Maya that big pill, we have to start working on pill taking), an hour later Irinotecan is given.   Before the chemo drugs, Maya is given ondasetron for nausea. Dexamethasone was also on the plan but this makes Maya irritated and just crazy, so we have opted not to use this drug, and we will try gravol or ativan if ondasetron is not enough.  In 3-4 hours the entire chemo taking is done and Maya is free to go home.  So far, Maya has been good, no throwing up, no nausea just a bit tired.

Yesterday was a weird day, aside of all the business, blood work, GFAR, back to the 8th floor, get prescription drugs on the first, back to the second for GFAR blood work (twice one hour apart), back to clinic, keep Maya entertained as she was hungry, very hungry. Temozolomide is given on a empty stomach.  It was 2pm and Maya was crying wanting to eat and the chemo drug was not ready yet.  In any case thanks to Karen who came with us  and provided much  help as Kirby left for work right after the GFAR needle went in.  For me, I felt a lot of sadness but hopeful at the same time.   The Toronto raptors came to the hospital yesterday and visited the kids room by room.  Maya does not really know who the raptors are, but was quite happy to see these very  cheerful and tall, tall people come into the room with some presents.   For me it was nice to as next door from us was Jake and his family also receiving the same chemo as Maya, and right across was beautiful Nate and Antonia receiving chemo, and so the moms talked and talked for a while, yes it was a Neuroblastoma day,  a cancer so rare but yet yesterday it was all we knew and the day clinic had  quite a few NB patients.

I wanted to end this again, by thanking you for all your support and for your emails and good luck wishes.   We are still mourning little Connor.  Kirby was able to attend Connor’s celebration of life  last friday and spent some time with Elena and Patrick.  Unfortunately Maya had a packed morning full of tests last friday and I could not attend. Our prayers, chants and thoughts continue to be with him.

Apologies for the loooong update, I have to go as my boss (maya) wants me 🙂

Saturday December 11 (BMT + 80) – Rest in Peace Gentle Warrior Connor Fox

It is with heavy hearts that we write this blog entry.  Our dear, dear friend   Connor Foxlost his battle with cancer yesterday.

We met Connor and his family (Patrick and Elena) earlier this year.  From the moment we met we became good friends spending a lot of time together.  Elena and I delighted on watching our kids play.  Connor and Maya would talk about cancer (yes so little, but they knew about pokies, and ouchies and scans and chemo)  they would exchange stories about their CVL lines.  When Connor got his new port line Connor showed it to Maya.   It was so beautiful to watch.   Yes, sometimes we even managed to sneak in some wine and cheese  to our hospital rooms and and while the parents took a break from the countless days spent at the hospital, the kids  played.  Sometimes one of them, or both of them would become cranky or would start acting up, but there was no need to apologize as both families knew what they were going through and what the chemo and all the steroids were doing to them.

We have good memories from this past summer when we were able to spend a beautiful weekend together at a cottage.  Connor and Maya fished and they caught not one but several fish.  We took a break from the sugar break and made s’mores for the kids.  We sat around the fire and told spooky stories, ohh Connor’s laugh was so infectious.  His smile was so warming.  Even though Maya had been just discharged from her surgery hospital stay and Connor had just finished his week of chemo they had fun.  The parents watched with joy and heavy hearts as we delighted on their laughs but we were so much aware of the hard journey they were going through and yes we dared to dream of a cancer free day.

I last saw Connor a couple of weeks ago, He was on Elena’s arms on his way to Princess Margaret for his radiation.  He looked so beautiful, his hair was coming back, his eyelashes were long and beautiful and he looked so peaceful and perfect.  Maya saw ‘Connor Fox’ as she calls him and went to caress his head.

Connor you brought so much joy to this world, to your parents and to those who were lucky to meet you.  You fought this monster like a true warrior from the beginning to the very end.    You will be forever missed our sweet little angel.

Death leaves a heartache no one can heal, love leaves a memory no one can steal.
(From a headstone in Ireland)

 

Images from our weekend at the cottage

Images from this past summer

Connor and Maya playing at SK

An improvised picnic with Connor and Maya’s friends

Sunday, December 5th -The Decision (Transplant+74)

I wish that everyone had a great weekend.  The Kim family had a great weekend as well.  We had a great prayer service on Friday night and Saturday turned into an all day in bed day.  That was …. incredible.  I don’t recall being so relaxed for a long long long while.  In anycase, Indira and Maya got up nice and late, say around noon and we just stayed in bed.  And the next thing you know, the entire day was gone and we haven’t felt so lazy in a long time.  Despite the fact that we’ve lost a day, it was absolutely great losing a day in such a fashion.

Of course, nothing here is as it seems.  Both Indira and I were brooding.  Trying to come to terms with what we should do.  Indira had her moments and I too had many moments trying to deal with the options ahead of us.  Namely:

  • Should we go ahead with radiation therapy  to see if  Maya qualifies for immunotherapy and take our chances with VOD?
    • There is a chance that Maya may develop VOD. If so and if severe, it will be fatal for Maya. Recall that Maya already developed a moderate case of VOD during BMT (transplant) and so her liver is still healing.
    • Radiation may weaken Maya’s organs and we may not qualify.
    • If we still qualify, it doesn’t mean that VOD may not occur.  It may still present itself after immunotherapy starts, in which case, we may still be disqualified.
    • If we do qualify and get immunotherapy, it is a long stretch and there is a chance that Maya may still relapse (Maya still has a lot of Cancer left).
    • Also, the uncertainty of the doctors… and the fact that initially they had recommended against radiation due to Maya’s VOD, it is only when immunotherapy was closed because Maya was not going to receive radiation that the doctors did further calculations to open the doors for Maya for immunotherapy, but they were still hesitant and left the decision to us.
  • Should we decline radiation therapy and subsequently, a chance at  COG’s immunotherapy here in Toronto ?
    • Immunotherapy is something we’ve hung onto since the beginning of the treatment.  So, there is an emotional link with immunotherapy.
    • However, given that Maya still has significant amount of disease, immunotherapy may not be enough. What then?
    • It is most likely that we will get some different chemo to reduce the disease.
    • Immunotherapy option, while closed from COG protocol, may still be available to us from Sloan Kettering, if Maya becomes NED.
    • We still are hopeful that Maya may get better from the supplements she is getting via the Naturopathic treatment.
    • We get the time we need to help Maya’s liver recover, albeit recovering may be a slow process, if we need to do additional chemo.
    • MIBG may still be an option in few months time.

Both Indira and I have spent the entire weekend trying to come to a decision.  We were both sitting on the fence,  trying to determine which way to go.  Tonight, based on our conversation with both my parents and Indira’s mom, in conjunction with what we were feeling individually, we came to an agreement that the best thing to do right now is to decline radiation and try to reduce Maya’s disease to something that can be better managed.    Are we sure this is the right decision?  No.  There are too many variables and too many unknowns.  It’s only when we look at the core points, we see that answer itself is obvious. Namely, looking at the options above,.  there are too many “if”s on the radiation side.  And on the flip side, non of the options prohibitive.

So, having spent a good part of the week thinking about what and how we should proceed, we have decided that radiation poses too many if’s for us to be comfortable with.  Against our initial feeling that immunotherapy is something that we should definitely aspire to, we have decided that radiation does not help Maya’s cause presently.

Both Indira and I feel good about our decision.  Both Indira and I have our parents council. although our parents did not promote their opinions, it was clear that once Indira and I came to a decision, it was nice to see that we were all in agreement.  We should not proceed with radiation therapy.  There are two many if’s for us to feel comfortable.

For now, we feel that our decision is the right course of approach.  Any error in judgement means death of our child.  Our decision is one of the hardest decision we had to make as a couple.

What will be sad for me, is that what little hair that Maya has regained, will be lost again.  You see, this is the disconnect between the clinicians and the parents.  We live in the realm where little things such as an additional spoon of food makes the difference.  We live in a reality where we quibble over another once of supplement.  We live in a reality where the growth of hair implies possibly (and even unrealistically) the reduction of disease.  To lose that is to admit that things are not quite as it should be.   To the clinicians, things are grossly defined; things that no parents are willing to trade… and yet are forced to make such egregious decisions.

When we started on the ANBL 0532 protocol, all our efforts were to reach this point; to get to immunotherapy.  Now, it no longer seems to be the silver bullet that we were looking for.  Yes, ch14.18 is now out of our reach.  However, Maya’s life is still intact.  And Mays is now healthy as she was before our diagnosis, back in March.  She is alive and she is kicking.

We hope, with all our heart that this is the right decision.  While I can not speak for Indira, I will not look back and question this decision.

 

[Indira] As Kirby mentions above it was a hard decision, i struggled with the fact that I had to take Maya for her radiation appointments knowing that this may kill her (if she developed severe VOD).  I struggled with the fact that there is no data on radiating kids with a history of VOD, I struggled with the fact that the radiation-oncologist doctor said he would not do it.  Also, Maya has a lot of disease left in her legs, pelvis and lower back.  They were going to radiate only the bed of the where the primary tumor was – right kidney area- too close to the liver. No radiation to the the other cancer spots because Maya has too many.  What about the other spots then?  Even if Maya did not develop VOD and qualified for immunotherapy it was going to be 4-5 months of immunotherapy, what if the cancer progressed? We know that immunotherapy works better in kids with least amount of disease, and unfortunately at this point Maya still has a lot of disease.  So then why risk Maya’s life.  She may not qualify  under the COG (children’s oncology group) here in Toronto, but she may still qualify at Sloan Kettering in New York.  Yes it is a huge financial burden, but the option is there.  And so yes, like Kirby I will not look back on this decision, I feel with all my heart that given the current circumstances this is the best decision for Maya  (also see Kirby’s summary of his radiation discussion with SK).  We are not stopping treatment, most likely Maya will receive more chemotherapy here in Toronto in the hopes of her becoming NED, and we are also open to radiation once Maya’s liver heals, and  we will then look into immunotherapy at Sloan.  Also I wanted to thank Dr. Irwin at SK and Dr. Modak at Sloan for working with us and providing information over the weekend.  Thanks also to all of you who joined the prayer group for Connor and Maya this past friday, we did feel all the love and strenght coming our way.

Indira

Meeting Summary Dr Irwin and Dr La Perrier, Dec 2nd, 2010

oday, I had a chance to sit with Both Dr Irwin, Maya’s oncologist and Dr. LaPerrier, radiation oncologist.  The purpose of the meeting was to ask some questions regarding the radiation therapy to help us come to a decision.  Bottom line is, there is no study on radiating a patient who’s had VOD.

The summary of the meeting discussion is as follows.  Please note that the what is put down below is in the “spirit” of the discussion rather than ver batum transcript:

Dr LaPerrier: Statistically, 3-5 percent of children who receive radiation will develop VOD.  There is no data on radiating a child who’s had VOD.   However it is felt that chance of developing VOD will be higher that children who did not have VOD.

Dr Irwin: Grossly speaking, Maya’s liver is roughly back to normal.  This is based on AST,ALT as well as bilirubin.  Also, ultrasounds shows normal blood flow.

KHK: I do not feel that getting immunotherapy may really beneficial since there is significant amount of disease left in Maya.  Moreover, I worry about disease returning during receiving immunotherapy.

Dr Irwin: Immunotherapy has shown to be beneficial for additional 20% of the children. Some children has responded better and others not so much.  Some of the children who responded well do include children who has had “signficant” disease.  Other children who were NED or close to NED didn’t do so well.   We just don’t know who will respond well and who will not respond so well.

Dr LaPerrier: The radiation that Maya will receive is well within the limits of COG guide line. However, data does not include children with VOD.  Because the tumor was on the right side, part of the liver will receive radiation. If the tumor was on the left side, radiation would be a non issue.

Based on the calculation, Maya’s right lobe (approx 5%) will receive full dose as it is in the area of the tumor bed.  We know that children who receive radiation in the primary tumor site do fair better. However, again there is no data for children with VOD.

KHK: If we decide to go with radiation, I am OK with moderate case of VOD, as Maya had in BMT, since we can use defribotide to help her.  However, severe case is not acceptable since it is almost certainly fatal.

In your opinion, Dr. LaPerrier, do you think for us to try MIBG-131 may be more beneficial for Maya? Maya’s disease is mainly around her lower back, pelvis and upper femur.

Dr LaPerreir: It’s hard to say.  There still will be concern for VOD, since the body will illiminate the radioactive isotope, through liver and kidney, there will be some exposure to her liver.  How it will impact it, I wouldn’t know.  I’m sure that MIBG guys would have a better idea, but having an understanding of patients with VOD, I doubt they would have any info. MIBG is also very new as well.

Typically, getting a lower dose of radiation consistently across time is thought to be better than getting a larger dose at one time, but there’s no data to back up this assumption.

KHK: OK.  Let’s put aside radiation for a second.  If we decline radiation, what option do we have?  After all, immunotherapy will be out of the question?

Dr Irwin: We would try to minimize the disease through new chemotherapies.  We can discuss this further down the line.

KHK: Dr LaPerrier, would you recommend that Maya go through radiation?

Dr LaPerrier: I would not.  There is a chance that Maya may get sicker (harm her more) as the result of the therapy and not the disease.

KHK: Well, I’ve never been known to mix words, but it sure looks like wild west cowboy stuff we’re talking about.

Dr Irwin:  I don’t think I would put it like that, but it is true that we just don’t know how Maya will react.  She’s always been sensitive to treatment and she’s shown signs of this during the induction phase with chemotherapy.

KHK: Ok. Thank you both for taking the time to speak with me.  I do really appreciate your help here.

Dr Irwin: As you know, we are running out of time.  I think this monday is the absolutely latest time we can start.  We need to come to a decision by Monday or Immunotherapy will not be a possiblity.

KHK: Ok.  I will need to talk to Indira and come to a decision.  I don’t think it is likely that we’ll come to an agreement tomorrow, so I think by Monday we will have a response.