Naturopath

We’ve taken Maya to see several Naturopathic Doctors (ND).  And Hana Weidenfeldwas someone who was recommended to us by my boss, actually.   Out of all the ND’s we’ve seen, we feel very comfortable with Hana.

We’ve seen her twice now.  The first was the initial consultation and the second was to discuss about making changes in Maya’s diet along with getting supplements.

Food is used to help the body fight cancer. (Food as medicine)

Here is the summary of our visit:

  • 50% of Maya’s diet should consist of fruits and vegetables, preferably raw. Juice if Maya won’t eat.
    • Always better to juice right away, rather than make a batch for the day. But, balance between additional work load and providing the fresh fruits and vegetables.
    • Broccoli, Cauliflower, Kale,Beets, Carrots,Rapini,Swiss chard,cabbage,tomato, garlic, sunflower seed sprouts for vegies.
    • lemon, apples, blueberries, raspberries, mango, papaya, pineapple and avocado for fruits.
    • Cook with lots of herbs. (Oregano, thyme, basil,savory,tumeric.
  • Use only coconut oil, cold press virgin olive oil to cook with.
    • Can use flak seed oil, but not for cooking and it needs to be refrigerated.
  • The other 50% should consist of Beans, lentils, nuts,seeds and grains.
    • No animal protein (Protein and sugar  feeds cancer).  Wild game is better if animal product is used.
    • Legumes should be prepared from scratch. No Canned stuff.
    • Nuts and seeds should be not be roasted and unsalted. We should roast the nuts ourselves.
    • No wheat or dairy product. No cheese, no yogurt. Use Kamut, spelt, quinoa, teff and brown rice.
  • Cucumber, lemon, ginger, mint could be added to make tea.
  • Use brown rice syrup and agave nectar for sweetness.

 

We’ll switch Maya over to the above diet gradually as required.  But for now, the most important thing for Maya is to put some weight back on.  It wouldn’t be surprising if Maya didn’t eat for 2 weeks or more, when she starts BMT.  We need all the calories we can get, in to her now, and can’t afford to fight over food with her.  While not ideal, weight is more important now.

 

Other Available Treatments

  • Autohemotherapy
  • Stem cell treatment
  • introvenous Ginseng Therapy (careseng)

These alternative therapies are something that I need to look into.  Presently, I have no comments to make.

 

Supplements

We got 6 different types of supplements.  I’ll post what they are and dosage in the next little while.

Aug. 29th – Sisterly love and BMT preparations

It seems that a looong time has passed by since my last entry of Aug. 25th (last wednesday).  Maya was discharged that night, and off we went home very happy.  Thursday as it is the case our first night at home after a hospital stay, we slept in.  Maya slept until 11am on Thursday.

Maya was just playing and running around on Thursday and mom was running errands, paying bills and trying to get IV supplies for Maya’s overnight hydration.  At the end of the day we did not get any supplies and by 10pm Maya’s urine looked very concentrated with traces of blood. Kirby drove to sickkids to ask for a 1 day supply, which he thankfully got.   Maya needs to be drinking  at least 1200 ml of liquid during a day.  She no longer drinks her favourite kool aid 🙁 or any pre-packaged juices, it is water or fresh juice,  and sometimes it is hard for her to drink the 1200 ml per day, we have walk behind her with her  water or juice and ask her to drink.   Back in the days she would go over 1200 with kool aid and all of those sugary juices.

Friday was back to the clinic for blood work.   My sister Jen (Maya’s fairy godmother) came to the clinic.  She is on her way back to Vancouver after her summer in Europe.   Maya was soo excited to see her.   Jen is always telling Maya stories about insects and fairies and Maya loves it.   Tia Jen, Maya may follow your steps and also become a zoologist doctor.   After a couple of hours of waiting around, and with the good news that Maya’s count were well on their way to recovery,  we took Maya to a sushi restaurant (yes, mom had a sanitizer on hand) and Maya ate lots (her appetite is back).   We then headed to the ROM.  Maya was telling tia Jen the name of all the dynasours, gosh Maya has a good memory, last time we were at the ROM a couple of months ago Kirby taught Maya the names of the dynasours and she remembered.   By 6pm Maya was exhausted, she slept on the way home and did not wake up when we got home.

On friday night mom got to dress up a bit to go out.   All my sisters, 3 of them, and I went out for a quick bit to eat and then we went to the movies.  It was fun, I love them.  We are there for each other, and they have been there for me during these difficult times.    As usual we goofed around and for a couple of hours my cancer world was forgotten.

I got home around midnight and surprise Maya was wide awake, eating!!, hurray for the eating, but this also meant that Maya had woken up at 9pm and a long night was ahead of us.    For cancer kids they say let them sleep as much as possible, and with the long day she had Kirby did not want to wake her up, but he was not expecting Maya to wake up on her own :-).

The weekend was busy with Maya playing with her friends,  a visit to the naturopath, visit to my in-laws (Halmony made a yummy dinner for Maya), and dinner with my mom, sisters and nephews.  We took Maya to a restaurant again, and she enjoyed seeing his cousins.  Overall we had a great weekend.

The week ahead I am dreading, we have  a busy week with lots of tests in preparation for the Bone Marrow transplant (BMT)

Monday Aug. 30th

9:00 am Dreaded Kidney test (GFR) – expecting lots of crying from Maya

10:00 Clinic visit

1:00pm Audiogram

2:00 ECG

2:30 Echo

Tuesday, Aug.  31th

11:00 am MIBG injection

12:00pm/1pm CT scan – C/A/P

Wednesday, Sept 1st

11:00 am MIBG scan

Friday, Sept. 3rd

8:30am Bone Marrow Aspiration/Bone Marrow Biopsy

Bone Marrow Transplant Preparation

As you all know, Maya is scheduled for Bone Marrow Transplant (BMT) on September 7th. According to all, this process is the hardest part of the process.  It will be as bad, if not worse than Hemorrhagic Cystitis episode.   BMT is the general term used for high dose chemo + Autologous Bone Marrow Transplant.

I’ve asked a couple of parents who’s children have gone through BMT and here is a list of things we can expect.  Thanks to Amber and Antonia for this info.  This will surely help us to prepare.

Here are some of the things we can expect and some things we should get on top of right away.

  • Maya is going to feel sicker than anything she’s felt.  She will be miserable.
    • expect high blood pressure
    • expect severe nausea.  Likely to throw up lots of blood.
    • expect severe mucositis (We will use Traumeel right from the start)
    • Maybe diarhea
    • expect lots of platelet transfusion.  (over 30 transfusion is not out of the question)
    • expect lots of antibiotics, around the clock.
    • expect to be in isolation for 3 weeks, maybe up to 6 weeks.
  • Get the pain team involved right away. Don’t bother with morphine.  Go strait to hydromorphone
  • Get the nephrology team involved from the start. Since Maya has only one kidney, we want to ensure that her kidney is monitored.
  • Get Maya walking as soon as possible.  Being bed ridden for anything over 3 weeks will make walking exceedingly difficult.  (This we know from our initial discovery of NeuroBlastoma)

For the parents:

  • Have an electric kettle to make tea/coffee.
  • All foods are likely to be eaten cold, since Maya will be very sensitive to smell.
  • There is only a fold out chair in the room.  Inflatable bed would be very nice to have.
  • Put Maya’s toys in clear containers.  They all need to be washed and you can only bring in small amounts of toys.
  • Ice packs are nice to have.
  • lots of diapers and liners.
  • We will take our wii and game boy.  And lots of movies for us.

Post BMT:

Even when we leave the BMT therapy, Maya will be immune depressed for additional 60 – 90 days.  In that time, Maya will be susceptible to infections.  We will need to ensure that her home environment is as clean as possible.

  • We will need to wash everything down.
  • rugs will be removed.
  • carpets will be steam cleaned.
  • We’re likely to get new bed for Maya/Us
  • We’re likely to get a new living room furniture.

We welcome any additional suggestions.

Aug. 25 – No plates in the platelets

The fever is gone, the one mouth sore Maya had is gone, a new one in her tongue appeared this morning.

This stay has been a quiet one compared to the other stays, with a couple of episodes of nausea and Maya peeing lots as they are super hydrating her.  Her 48 hour room isolation ended this morning at 4am.  She is now free to walk around the halls.

Blood work from this morning showed that Maya’s platelets were low again at 16.  We have been waiting for platelets all morning long as we are set to go home after the platelet transfusion.  It seems that they did not have any platelets from Maya’s blood group available so they are getting a shipment this afternoon at 5pm.  Hopefully we can go home after that.

When nurses and doctors come Maya listens and she asks questions.  This morning the nurse was explaining that her platelets were not here yet and Maya said “‘I’ve  never seen any plates in the platelets, why do they call it platelets?” .  I thought it was cute and funny, but yes Maya is pretty much involved in her care.  Earlier today she explained to the nurse how she liked her line dressing to be changed “no alcohol on my skin, and a duo-derm” 🙂

Yesterday Maya took a very long nap from 1-6pm, and oh boy, it was midnight and she was still up “I want to eat”, “I want to play”, and so by 2am even though the lights were off and we were in bed, she was still singing and talking.    Maya asked me to sing her a song for her to fall asleep, so I sang “twinkle, twinkle little star” and Maya said “oh moooom that’s a nursery song, I want you to sing something like  alejandro from lady Gaga” .  Yeaah, time flies, no more nursery rimes for my 4 year old.  She was getting frustrated because I did not know the song and thanks to you tube Maya listened to the song and went to sleep, but she was up by 8am, so I am waiting for her to take a nap so mom can have some zzzz’s too.

We desesperately want to go home, next week will be busy with lots of tests for Maya.   Then we would be back at SickKids for at least 4 weeks straight.  Every time we come back here it seems we have never left.   We have met some wonderful people, a lot of them also NB families and we cheer for their little warriors accomplishments and cry with them when there are bumps in the road.  There are good days and there are bad days;  there are days with pain, anger, fear, sadness, but today for Maya is a good day.  She is a happy, goofy, head strong ,  and loving little girl, and for that I am grateful.

Indira

Nathanial Hudson

Nate is a great little boy with NB.  When I first met him, I was struck with his politeness, inquisitiveness and his manners.  That lasted for about five minutes before he had a minor episode.  Most certainly, mild mannered compared to Maya.

In the Neuroblastoma family we’re part of, each parent we meet are special.  They are special because we all share similar stories and we all have same hopes, dreams and fears.  The children are all very special because they are like our own; We follow their progress and their victories are our victories.  Their set backs can be devastating to us as well.

Antonia Palmer, Nate’s mother wrote the following blog piece which I felt expressed the archetypal story of parents who have sick children. This particular blog is the blog that has also been brooding in me as well, but I just didn’t have the courage to post, as Antonia has done.

I am cross posting Antonia’s blog with her permission.

God bless the child”  (Billie Holiday)

August 24, 2010

Posted 3 hours ago

It was a year ago today that Nate broke his right leg for the second time and the heart of our journey began. He had broken the same leg before but this time, there wasn’t a fall or any trauma which could have caused the break. We were down the wrong diagnosis pathway for many weeks until the neuroblastoma was finally found. I often have to stop myself from wondering how different things would be if the cancer was found when he broke his leg the first time.

When Aaron and I write the updates, we try to focus on the positive and the happenings of the day as much as possible. We often imagine reading these with Nate when he is older, and telling him the stories of how brave, strong, and incredible he was through his treatment. We want him to have a record of hope and strength ? through our words and all of the messages of support that everyone leaves for us. Most of all, it is the story of one remarkable boy who continues to fight this evil disease.

What we don?t often talk about in detail is how Aaron and I are feeling. Inside the both of us there is a constant battle that some days you win and other days you lose. On one side, you have the positive — the belief that we are going to win this, beat this, and excuse me, but **** this cancer so that it never, ever, not ever returns. On the other side, you have the negative ? the darkness, the fear of the worst that could happen, the grim reality of neuroblastoma, the toll, and all that it takes and continues to take from our family. These two sides rage within us, mix everything up, and create a whole host of emotions that you have to sort through on a daily basis. All of this is exhausting, both physically and mentally.

Sadness, fear, anger and guilt are the big dark emotions. There is immense grief for what Nate must endure, and the life we have lost. There is also so much fear. We have so little control over this situation. We are very involved with Nate?s care and make sure that our understanding of protocols, drugs, and procedures is as detailed as possible. However, even with all that we know and all that we can do, we are still so helpless in this journey. We follow a pathway that many children have walked before us. We learn far too often about children who have relapsed and those who are no longer fighting their battle. This is terrifying. We have to make life-changing decisions on a regular basis ? decisions that are often based on incomplete information and imperfect circumstances. We have no idea how the decisions we make today will impact Nate in the short and long-term.

I think that the biggest emotion for me is anger. I have never taken anything in my life for granted and have always felt very blessed, especially when Aaron and I fell in love and made two beautiful boys. I didn?t need this experience to open my eyes or help me see what is important in life. I knew that already. It wasn?t easy finding my true love and when I did, I knew how lucky I was. My dreams became a full reality when Nate and Alex were born. Some days I walk into SickKids Hospital and I just hate it. I hate everything about it. I hate the colour of the walls, the sound of my shoes as I walk across the floor, the chipped paint, the fluorescent lights, and the smell of medical supplies. Everything about it makes me so mad. I don?t want this. I don?t want this in my life. This was not supposed to be my life.

I don?t think that I am a bad person but now I constantly question what I did in my life to make the universe hate me so much. I know that this is not rational thinking but this is what happens when everything gets so mixed up inside. You can?t help but think about every minor transgression in life and wonder if that was the moment when the universe decided you crossed the line. I get so angry because we spend so much time apart as a family, and that Alex has lost out in many ways because Nate requires so much care. However, the real heat of my anger is from seeing all that Nate has been through. The pain he endures, the countless tests and pokes, the long list of complications he has fought through, the fact that he can?t walk and doesn?t eat, and that this cancer picked him. I am angry about all of the time that we have had to spend away from family and friends, the fact that Nate has missed out on socializing with children his own age, and that his future will be marked by this disease forever. He will probably never have a family, his growth will be significantly impacted, there is a chance that a secondary cancer will occur sometime in his life, and there are a whole host of other maddening long-term effects and austere statistics.

But, there is also the good. Along this journey, some things have become clearer and we have had some truly beautiful moments that will stay with us forever. We have seen bonds of love and friendship fuse even tighter and we have been constantly overwhelmed by the support and caring that so many people have shown us. If this did have to happen to Nate, we are only a short drive away from the best childrens hospital in Canada ? we don?t have to fly or drive hours and hours to get treatment. We are seeing great promise with immunotherapy, the first ever for neuroblastoma, and Nate is getting that treatment now. We will take every percentage point that we can.

I hold on to a number of different visions. I think about the cancer being sourced out, found, marked, and obliterated. I imagine huge explosions that completely destroy the cancer cells until nothing recognizable remains. I think about Nate?s body and skeleton with bright shiny, white, and strong bones surrounded by veins of bright red blood and organs working in well-timed synchronization. I think about Nate?s strength ? the special kiss he gave me when he was so sick during his stem cell transplant, the sound of his voice when he tells me that he loves me, his bed dancing, and they way that he snuggles with his little brother. I also think about the future quite a bit. I imagine Nate and Alex as older boys, walking off to school together with me following behind trying to look inconspicuous, going camping together and taking the boys in a canoe for the first time, watching them graduate through school, play sports, and learn how to drive. I think about the day that we drop Nate off for his first day of university (or college or whatever), his first love, his true love, and everything else in between. I tell him constantly that he is going to grow up to be a beautiful man and that he will live a long and healthy life.

Right now, we have a very different life than anything we could have ever imagined. Once Nate beats this cancer, we will start a new and changed life. One where we cherish all of the ?normal? moments, make extraordinary memories, spend more time with family and friends, and try to get back all of the time that we have lost in hospitals. I have no doubt that there are going to be different challenges that will face but that is okay. We can handle that. We will also learn to let go of the anger and the guilt. But, we will probably never completely loose the fear. Every muscle ache, sneeze, and cough Nate has will be a concern. Anything and everything will evoke a fear in us, a fear that the cancer has returned. It will be a fear that we will have to live with for the rest of our lives. But, we will manage that too and balance it with the desire to live and enjoy life.

In one of the bedtime songs that I sing to Nate, there is a part that goes like this: ?you have suffered enough, at war with yourself, its time that you won?. That is a very important part of the song for me and is later followed by the phrase, ?you?ve made it?. Nathaniel Lloyd Palmer Hudson is going to make it. We are all going to make it.

BC Fire

Farmer 1 : So… how’s it going over dere?

Farmer 2: Not too god.  Goddamn bush fire took everything over there on the west side all the way to down to the soil.

Farmer 1: Hmmmm, anything left worth looking at?

Farmer 2: nnaaah.  What about on the east side?

Farmer 1: Still burnin.

Farmer 2: What about that little sapling by the brook?

Farmer 1: It’s still there, but looks worse for wear though; Lost all d’em leaves. But it’s still there.

Farmer 2: Well….. I guess that’s good.

Farmer 1: Yup….

Farmer 1: What about that yearling.

Farmer 2: Oh dat one’s still ok.  The winds blowing the other way.  So, I think dat one will be ok.

Farmer 1: What about dem tow big spruce trees?

Farmer 2: Yeah.. dose two are gone. Took the both of ’em in matter of seconds.  It’s a hell of a thing to see them things light up.

Farmer 1: Yeah eh? When they go, they really go…chuckles.

Farmer 2:  Well I think the roots are still there.  They go down quiet deep eh.

Farmer 1:  Well…. we’ll see in the spring if anything comes up again.

Farmer 2:  Oh… I’m sure something will come up. Those two, they’re dug in deep enough.

Farmer  1:  Yeah… hope so.  Goddamn bush fire… they take everything eh? If you’re lucky, you might come out unscathed.  Mostly though, if you’re not really well grounded, it’ll burn ya down.

Farmer 2:  Yup. That they do…

 

Fire called…. Nueroblastoma.

August 23rd, Fever

After a chaotic, wonderful, stressful and peaceful week at home (yes all at the same time, last week was a week full of emotions), we are back at SickKids.     Saturday Maya played most of the days with her friends, by 7pm she was feeling a bit tired, and she complained of nausea and mouth pain.  By 8pm she spiked a fever of 38 C.  When a kid is neutropenic a reading of 38C twice during a day or a 38.5 C reading is a stay at the hospital.

Maya was not feeling  well,  she said we need to go to the hospital, but before that she wanted to eat korean meat :-).  Kirby made his way to a Korean restaurant to pick up some food.  Before even touching the food Maya threw up.  When Maya throws up she cries because she hates the smell, and so this time she had a bit of a melt down.   We called the oncologist fellow at sickkids and they told us to bring Maya in through emergency.   After quickly packing a bag and toys for Maya we were in the car by 10pm, but then Maya was in a happy mood, and she wanted to eat korean meat again.  Her temperature by now was 37.5 C.  We went back inside the house, fed Maya and called the hospital back.  The plan was to stay home and check Maya’s temperature every 2 hours, if we got another 38 C reading we had to go.   And so by 4am her fever went up to 38.6, we instantly got up and took Maya to SickKids.

At SickKids, they were waiting for us.  Unfortunately they did not have any beds in the oncology ward so we spent the night in emergency until about noon,  we were then transferred to 8A.

Maya was quickly given antibiotics, they knew not to give her gentamicine due to the atotoxicity.  The protocol for fever is also to get peripheral blood. As soon as Maya saw the elastic band she freaked, she would not give her arm to the nurses .  Kirby then told them not to do it.  After a bit of an argument with the nurses, it was agreed to do a blood a culture from her central line, if Maya continued with fever a peripheral blood culture had to be order (blessings from the doctor and the oncology fellow).  Maya and her parents were happy with that.     Maya was then given a blood transfusion.

This morning at 4am Maya spiked a fever again of 37.9 this means that we have another 48 hours stay here.   We just came back from x-rays as Maya complained a couple of times of back pain.  We are not sure if this is from one of the chemo drugs she had or actual pain due to her compressed fractures.   All this time Maya’s urine has been showing small traces of blood, this makes us very nervous as we do not want an episode of hemorragic cystatis again due to cyclophosphomide (another of her chemo drugs).  Her hydration was increased and she received a  platelet transfusion.  Maya is also getting morphine for her mouth sore.

Maya is right now happily playing videogames  with Karen who is back from her vacation.    Maya is a bit on the moody side and very particular about the way things are done.  She has major meltdowns if I hold her the wrong way.

Once again I wanted to say thanks to all our friends, neighbours, family, and all of you who we may not know us but that follow our blog.   We are always amazed by your acts of kindness, thanks.   I wanted to say thanks to Joseph, another cancer survivor.  You made my day and Maya’s day on Saturday.

Thanks

Indira

Aug. 20 – The Calm

Karen, Maya’s nanny since she was 11 months old is off this week.   I was dreading the week as she usually comes with me to the clinic, naturopath, etc.   But on Monday Kirby came to the clinic with Maya and me, and on wednesday my mom came to the naturopath with us.     For the thursday clinic visit, I thought I could do it alone, and it was a bit hectic but mission accomplished.

Wednesday night came and I could not sleep, I was tossing and turning. I have nights like that sometimes.  I kept on looking at the clock, 3, 4, 5 and I was still wide awake.   In any case, I must have fallen asleep after 5am as the alarm went off at 6:30am and I could not open my eyes.   But I quickly got up, took a quick shower, made some coffee, made breakfast for Maya.  Prepared her snacks, llunch, vitamis, change of clothes, dvd player and movies, and other entertainment activities to keep her busy at the clinic.  I was hoping to be out of the house by 8:30am, but when I woke Maya up at 8:00 am she was in a not so good mood.  She cried because i was not longer wearing pj’s.  I also realized that she had an accident, she had peed in the bed :(.   Maya has never had this type of accidents before so it made me a bit sad as I could not  help thinking that it must be the stress she is under.   In anycase, after washing Maya up, changing her, calming her down, feeding her breakfast and making her daily fresh carrot and apple juice  it was already 9am.  BUT we made it out of the house.   With the only problem that we had to be at the clinic by 9am and it was already 9am.    The ride to the clinic was fun, with a spanish cd Maya loves and both mom and Maya singing at the top of our lungs.   Anyhow, we got to the clinic and surprise!  there was nobody in line.  When I registered Maya they asked me to go to the phlebotomy room for blood work.   This means a finger poke for Maya.  Not a big deal but we have avoided that room for so long, the only time we went Maya had a huge melt down, Maya gets her blood work done from her lines.

So here you have a stressed mom thinking my daugther will have a meltdown, after the morning rush, and only a couple of hours of sleep, and realizing that after unhooking Maya from her nightly IV hydration her lines were not flushed,  I asked for her nurse practicioner to be paged.   10 minutes later they called Maya’s name, and OMG, my hormones must have been raising, I soon as I saw Denise  I started crying, and crying and crying.   They were nice enough to keep Maya entertained as she did not see me crying.   I think I poured my entire life 🙁 .  I am sure now  i must be  known as the “crazy mom” ahhh.  Anyhow, the good part is that Maya did not have to go to the poke room, since they had to flush her lines and do some additonal blood work I requested.  Maya headed to the IV room where her blood was taken from her CVL line…  pain free.

Things were running pretty fast at the clinic as Maya’s urine test and blood work results came back in less than 1 hour.   Maya’s plateletes were low at 15, which meant a platelet transfusion.  My daughter was soo excited when she heard she needed a platelet transfussion :-).  This meant a trip to the new daycare, this is not longer a communal room, now every kid gets his/her own room complete with a huge flat screen tv.  Maya knew this so she couldn’t wait to go to her room :-).  A platelet transfusion also means an entire day at the hospital.

My mother in law came to visit us.   I have to stop and look around at all the beautiful people that surround us, friends, family, neighbours. There is always someone making our day, especially at the hospital, making sure that we have eaten, that Maya is well.  Thanks Halmony for coming to see us, it meant a lot to me, we love you very much.

Maya is now neutropenic, meaning she has no immune system and we have to be very careful, a fever of 38 C is a winning ticket to a 48 hour stay at Sick Kids.    Sure enough we got home and she starts whining, I am bored, this is so boring, I miss karen, I want to go for a bicycle ride, i want to go to the park.  In spite of being in the middle of her cancer treatment, Maya never stops amazing me with her energy.  Yes, she gets tired easily and perhaps cannot runa as fast or as much as  the other kids, but she does her  best and she tries.  The plans to clean our now messy house, and do some laundry dissappear, and sure enough Maya got her bicycle ride and then a visit to the park with her dear friends, who by now know to sanitize her hands when they come home because Maya tells them “I am nopinic” 🙂 (neutropenic) .  My sister Horiana, came along with baby Lily.  Gracias nana for coming to the rescue 😉

So overall, yes the house is messy, i have laundry piles to do, Maya’s sea of little toys (polly’s, pets, ponies) have been sitting on the living room floor since the weekend, but ohh the joys of spending time with my daughter and going outside and enjoying these last few days before Maya goes into complete isolation for at least 6 weeks.  Yes, the Bone Marrow transplat is scheduled for Sept. 7th.

After a sleepless night, and a hectic day,  somehow night time came and I was calm, everything was so calm, there was a sense of peacefulness I have not had  in a while, and a sense that I can do  it all.   I gave Maya a bath and we both passed out by 10pm.

Thanks again for sharing this with us.  Thanks to the Bayview girls for the beautiful card!! yes we live on coffee these days.

God Bless you

Indira

 

August 18 – ups and downs

Big apologies for not posting any updates sooner, we have been home for a couple of days and I just did not want to jinx it 🙂 …. silly me.

Maya was discharged from the hospital last Friday, August 13th.  Maya was soo happy to come home and was asking to see her friends.   There were some tears before leaving the hospital as Maya had to get an encephalon on her arm for her daily GCSF shots.

Saturday  I took Maya to a farm in Milton. My sister Horiana and her family came along as well.  Maya was so happy to see baby Lily.   Monday was back at the hospital for some blood work (luckily everything was ok), and for the first of many check ups/tests prior to the Bone Marrow transplant (BMT) .   Maya saw a dentist.  This was to make sure that she did not have any tooth infection or that she needed any teeth to be pulled out.   Maya got a 10/10 mark for brushing her teeth and happily we were done in less than 10 minutes.  No dental work required  prior to BMT.

We are back at the clinic tomorrow for another check up, and a  new encephalon.  Other than that life has been hectic and happy and tough at the same time.   Right now, Maya is doing well, so far no fevers, no mouth sores so far so good, crossing my fingers.   We have been at home, cuddling in the mornings, going to the park, going for ice cream, playing with friends, visits to the naturopath and just trying to give Maya a normal life.

For me this experience  has been a tough one, I have faith in God that my little one will make it and that I will see her grow up into a beautiful young woman.  Maya is a tough little girl, so grown up sometimes…. she really touches my heart.

Please if you can, chant, pray, meditate, pray, wish and hope for Maya to have next to no cancer left, or even better for her cancer to have dissapeared.  The next couple of weeks will be very hectic, Maya will have several tests including a bone marrow aspiration and an MIBG to assess her response to the treatment.

Thank you all for sharing this journey with Maya

Indira

Sloan Kettering Memorial Cancer Center Dialog

Sloan Kettering is a renowned cancer center located in NYC. We were fortunate enough to have Indira’s relative work at Sloan Kettering.  Through this relative, we were able to present Maya’s status to one of the oncologists, Dr. Modak at SK. (Some of his publications are here)

Thank you Bolivar for this opportunity. Following is a summary of two conversation I’ve had with Dr. Modak.

Telephone summary with Dr. Modak.

  • Sick-Kids is a good place to be.
  • ANBL 0532 is a reasonable protocol.
  • There is a major logistics issue with brining Maya down to Sloan Kettering.
  • He recommends that we go through BMT. (There is acute toxicity to worry about) Aside from possible acute toxic response to high dose chemo, damages are already there.
  • If we are set on coming to SK, we can start with International Center to register right away. (212) 639 4900.  We should do this even if we don?t end up at SK, to get the ball rolling.
  • In order to move to 3F8, Maya needs to be in complete remission.  Dr. Modak would want to see the latest test results as soon as possible.  If she is not in total remission, we would have to get her to total remission somehow prior to Immunotherapy.
  • If Maya is in total remission, we could go directly to 3F8. There is a window of opportunity to get the antibody; 60-90 days of high dose chemo.  (logistics apply here)
  • He would also like a summary of Maya from Dr. Irwin.
  • He is worried about 20% reduction of chemo on cycle 6. It did not make sense to him as to why the reduction was done.
  • 3F8 is mouse antibody.  Humans form HAMA (Human Antibody, Mouse Antibody) We need immune suppression so that HAMA is not an issue.
  • If we?re to bring Maya to SK (in complete remission) , Dr. Irwin would need to be on board.
    • Possibly round 7 with cyclophosphamide to immune suppress Maya.
    • Scans after the immunotherapy could be costly, if done at SK.  Can we do the scans in Toronto after immunotherapy?
  • Cost may be anywhere from 100 – 150K just for immunotherapy. If Maya develops fever or there are complications, it would be more.