Maya’s Complete Blood cell counts

This is really for us, but if you’re a propeller head like me, you’d find it interesting.

WBC < 0.5 , hemoglobin < 70, platelets < 10 implies transfusion.

Date White BC Hemoglobin Platelets Comments
04/09 0.1 (Neutrofils 0.0) 81 113 Maya is Neutropenic.  Infection now would be considered very serious. When Maya is neutropenic, we take her temperature constantly. If her temperature goes above 38 degrees, she is given antibiotics immediately. If we’re home, we have to high-tail it to the hospital.
04/11 0.1 (0) 67 37
04/12 0.1 (0.0) 96 20 Maya got a transfusion yesterday. You can see that hemoglobin shot up
04/14 0.6 89 15
04/15 1.9 86 23
04/19 43.2 93 85 The increase here is indicative of GCSF working. We were home for few days before cycle II started.
04/23 22 87 118 We started chemo cycle II on April 22.
04/26 3.9 86 232 last day of cycle II.
04/ 30 0.1 75 90
05/03 0.1 57 19 We checked in to HSC emergency for tingling in Maya’s bladder. Hemorragic Cystitis. Maya received platelets and red blood cells.  Hemoglobin because her counts are to low.  Platelets to help with the clotting. Otherwise, Maya will keep bleeding.
05/04 0.3 70 46 platelet transfusion.
05/05 1.7 67 60 another blood transfusion.
05/06 11.3 136 38 another platelet transfusion
05/07 29.7 92 92
05/08 54.9 92 92 start high dose GCSF in preparation for stem cell collection
05/09 95.6 95 85 Skip high dose GCSF. White cell count too high.
05/10 98.8 95 92
05/ 11 stem cell harvest. The transfusion went well.  Enough to do 10 transfusions.  Not sure if I’m up for even 1.
05/12 2 platelet transfusions were given to Maya to remove the femoral catheter
05/18 11.1 93 385 One day after chemo

Here and There

After 17 days of being at sick kids we were discharged this past wednesday, only to be re-admitted the following day as Maya was dehydrated and her electrolytes were pretty low (potassium, magnesium, phosphate).  It was only a two night stay as we were discharged on saturday afternoon.  ahh the joy of driving home with my little one.

On Sunday we slept in, as it is the case every first day we are back from the hospital, and then Maya started complaining that she was too weak to walk.  Kirby and I exchanged a look, a silent look that said we were worried, scared.  Yes, our lives are full of worries now.  We always need to be on alert.

By monday morning she was walking and happy to go to Sick Kids for blood work.  It is a bit weird but it has been 10 days since she finished cycle 3 and she has not become neutropenic, at least not yet, although her platelets  and hemoglobine are low, but not that low to get a transfusion.  While waiting for the blood count at sick kids, Maya happily did some crafts in the main floor, Sick Kids had an event going for Victoria day.

Maya is now getting hydration overnight, we have boxes and boxes of medical supplies, we have quickly learned to flush Maya’s lines, give her G-CSF (injection to increase white blood cells), connect her to the IV machine.  Kirby is Maya’s nurse at home, my job is to do her sausage, this is the gauze that covers her lines.

While Maya is getting used to all these procedures and can explain in detail her cancer, she gets very anxious when there are possible pokes  like getting a new enseflon for G-CSF in her arm , which is done weekly (in this way the daily G-CSF injections are done through the enseflon, meaning that Maya does not get daily G-CSF pokes on her skin), and when dressing changes of her central line are done.  Dressing changes for Maya are long and full of tears.  Kirby and I take turns to remove the big tape with remover, and then the nurse will desinfect the area and put a new tape.  Maya will scream and get very upset.

I remember the first weeks when Maya was diagnosed, when it was time to change the enseflon Maya would cry and cry and say to me “mom please defend me, fight the nurses, do not let them hurt me, let’s run away”.  Her words would break my heart because I could not help her, as these things have to be done, but yes I so much wanted to tell everyone there, please leave my daughter alone.

THANKS

I wanted to say thanks to friends, neighbours, and family for all your nice gestures, your visits, the food, the presents for Maya, (she is always excited to open cards), and this past weekend the cutting of our lawn, thanks soo much!!.   [KHK]  You’d think my strapping young lad would take care of things like that 🙂 [KHK] Taking care of Maya, the visits to the hospital,  take a toll on us, so there are times that we are so focused on just getting through the day, that perhaps we do not reply back to an email or we do not say thanks right away, please do not take it the wrong way.  Your gestures mean the world to us,  it is  what helps us through the days.

 

Anyhow… tomorrow is back to Sick Kids for blood work, most likely Maya’s magnesium will be low as it is hard to give Maya any oral suplements or medecines, she throws up every time when she does not like something.  On the good side, Maya is back to being herself, a lot of laughs, arguing :-), and just being Maya, filling up the house with laughter and life.  Her appetite is back, but she is very stubborn and picky when it comes to food, but slowly we are changing Maya’s diet, she is getting a lot of vegetables and fruits -things that she does not like, hidden in her food and juices.  We have also gotten rid of all plastic utensils. Maya misses her plates and cups, but I heard her explaining to Karen that we do not have plastic plates and cups anymore as it was not helping with stopping her cancer… ahh my little girl

 

Double edged sword.

I’ve been reading a bit lately.  There are materials necessary to understand what’s happening to Maya.  There are materials that I read to see how we can improve Maya’s chances.  Then, there are scientific papers that I (try) to read.  They are worse than technical computer papers.

The problem with cancer is this.  Fundamentally, cancer is part of Maya.  We understand it as being part of Maya. But more importantly, Maya understands it as being Maya. That is, her immune system does not recognize the cancer as being anything other than Maya. So, cancer goes unchecked by Maya’s own immune system.

So from outside, we need to target the cancer cells only and not any other parts of Maya.  Unfortunately, we  have a shot gun called Chemotherapy.  It’s not a snipers rifle going after these individual cells, but rather, it’s a shotgun that covers a wide area. It shoots first and asks questions afterwards.  The consequences are:

  • Did we hit something? If it is, did we hit cancer?  Sometimes we don’t.  That is, chemo does not have any effect on the cancer but nevertheless have an impact on Maya, such as hair loss, general malaise or hemorragic cystitis.
  • Cancer does get smart. It will duck for cover.  Found under unfavorable environment, it will respond such that subsequent treatments will no longer work anymore. This is why typically a cocktail is given. It’s like having multiple shotguns going off. If there is any doubt on the theory of evolution, well… here it is.
  • We also change the shooters so that cancer does not become smart enough to evade. Typically at least two chemo are given in conjunction.  That way, what escapes one, will be hit by the other.

Cancer is part of Maya.  So, trying to sharp shoot cancer is a difficult task.  It is a moving target who can figure out what the shooters do.  Immunotherapy is the big buzz that targets the cancers and is part of Maya’s procedure.  The main goal of immunotherapy is to use Maya’s own immune system to fight the cancer. But, it too wants a pound of flesh.  More on immunotherapy in the future.

So,  good part of cancer therapy is relating how to deal with the shotgun effect.  Killing the cancer cells harms Maya too. Ok… we’ve got part of the cancer, but we also got part of Maya.  Hair loss, nausea, organ damage, mucositis are just few of the effects of this shotgun. Good portion of the procedure is dealing with the collateral damage.  For example, one of the staff tell us that we need to give Maya the anti-emetic drug.  Part of this problem with this anti-emetic drug is that it can cause muscle stiffness.  But then, we can give her gravol for it, so it’s ok….. Jeez.

One can talk about chemo, but the problem at large remains the same.  What can we give Maya that will only work on the cancer cells and not the other?  This is the challenge in modern day oncology. It is not an easy problem. I wonder if cancer will be solved in Maya’s life time.

Luckily, Maya is a patient of Dr Irwin. She is a very learned woman.  She is also very kind and sympathetic. She was the first to admit that they did not understand N B very well. While it does not help our circumstances to our satisfaction, we are very grateful to have someone who has taken on this task head on.  There are those who seek out difficult problems. I am glad Dr Irwin has decided to take this difficult challenge.

It’s been two months since we found out that Maya has cancer.  So much has happened. On this long weekend, we are very glad to be home doing nothing but hanging out and converting our house to be more Maya friendly.  If someone had asked us on March 24th, how was Maya’s health, we would have said healthy as a horse.  In two months, she has that frail look of a sick child. Her walk looks labored with an awkward gate.  It has taken so much of her.  We fight to give no more.

And at the end of the day, all that matters is that headiness I get when I kiss her soft cheeks and have her hug me back. We work to get Maya health for the next round of Chemo.

Update

Hello,

Yes we did go home on Wednesday afternoon (May 19th) but Maya got dehydrated and we had to come back to Sick Kids on Thursday.  The plan was for Maya to get hydrated for 4 hours in the daycare ( a big room with lots of beds and TVs for outpatients to get chemos/hydration, etc) while waiting for her blood work to return.

Her blood work also revelead that Maya’s potassium was very low, so the desicion was to stay overnight.  We are back on 8A.  Today Maya is back to being her bubbly self, chatting away, and charming the nurses.  She is off the IV but the doctors want to see if she is eating and drinking enough – can she be off the IV and still not get dehydrated and keep her potassium level stable?-   Her eating has picked up a bit but it is still not great.

Because it is the long weekend, we will stay here one more night, so Maya can be monitored, and if things go well we should be home tomorrow morning.

When we came back to the clinic yesterday, one of the nurses said, we knew you would come back :(, anyhow, even so, the one night at home was good for the soul and the mind, we all had a very good sleep.   Maya woke up in a good mood, and asked for an egg sandwiche and orange juice, but she then later complained of a headche and that’s when we rushed to the outpatiend clinic.

Kirby made a  fabulous dinner on wednesday night, and just to be home was lovely, thanks honey!

Also, thanks to Karen (Maya’s nanny) who has been with us for 31/2 years.  Karen  has become a pro on packing for hospital visits, she knows exactly what Maya and mom want and like.   Karen even packed the puke bucket, this came very handy in the car, as Maya threw up on the way to the hospital.  Once, it was decided that we would stay the night, Karen went back home and had an overnight bag ready for me and Maya which Kirby went to pick it up.

So one more night at SK, one more night before we can have  a longer break at home….

17 Long days

This time is mom writing

We have been here at Sick Kids for 17 loooong days…. I thought we were going to go home yesterday.  I was all packed up to go but Maya did not drink enough.  She had a bite to eat but maybe only 20 ml of liquid.   So the doctors were NO, NO, NO, we do not want you to come back to the emergency.

Today the plan is for Maya to get hydrated all day long, then we can go home (I HOPE,  I am about to go crazy……….).  A Home Care nurse will come on Thursday night to connect Maya to an IV.  In this way we make sure that even if Maya does not drink she still gets hydrated. And then back to the outpatient clinic on Friday for a check up.

This round of chemo has been hard on Maya, she is tired, and does not have the appetite to eat or drink, when she  does eat /drink she complains that the taste is yuckiiiiii :(.  And this is 3 days after she finished the third chemo cycle.  I am hoping that once we get home she will at least cheer up a bit more and her appetite will come back.  My little one has lost a lot of weight.  Today after i kept asking her to eat something. she said potato chips and dip…. ahh we are trying to change Maya’s diet to be healthier and with more cancer fighting food, but i had to give in and say ok Maya, at least she has something in her stomach.

I so much miss home, last night after Kirby left and Maya was peacefully sleeping there was a bit of a melt down, but it was good for the soul.   I want my little one to get better  and I want to go home and sleep in my bed without having to wake up every couple of hours listening to the loud speakers or the nurses coming in .. .and I want to have a loong warm shower without having to bend down when I shampoo my hair (kid size showers at Sick kids).

Thanks everyone for your emails, and notes and your prayers for Maya.

Toxome

Cancer is on the rise.  We’ve all heard this.  And according to WHO, the number will increase significantly in the next 10 years. I believe part of the reason for this increase is due to increase in the toxins in our environment.

Before Maya was diagnosed with cancer, I would have a passing interest in these trivial pursuit types of news.  Toxins in our environment is very pertinent to us now. My current perspective is this; Clean up Maya’s (our) environment and provide the best nutrition we can. The change can only benefit us. Pessimistically, it will mean nothing but it may mean that Maya is able to deal with her disease and chemo better. Nothing lost by trying.

Toxome is a word that is coming into fashion. I can’t seem to find a definition for it though.  Suffice it to say, it’s the study of toxins in our body. As I focus my attention on this, there is an abundance of information on this area. The basic gest is that we’re all walking bags of pollutants.  Some, such as BPA and Bromine based fire retardants (BFR) can be quite harmful.  Unfortunately, they are everywhere and some are still on the increase. For example, PCDE  a derivative of PCB is on the increase.

One source of information is  “Slow death by Rubber Duck” It is a pop literature, but nevertheless, it contains good useful information.  As I’ve begun to look, I am finding that there are an over abundance of information that we can take advantage of. It also means that we do have to sift through a lot of garbage as well.  A general rule of the thumb is, if an article also contains promotion of a product, I stay away.

Health effects of some of the toxins are here.  Don’t think that because these chemicals have formal names, they do not impact us.  They are everywhere. Matter of fact, in some of the chemicals, they are more concentrated in our children than they are in us. For example, PCB’s where put in children’s pajamas.  Some children were developing serious health problems back in the 70’s and 80’s.  While PCB’s have been banned in most countries, they are still found in most people, although the toxic load have been decreasing.  So, this is definitely a good news.  However, PCB had a cousin called PCDE. This substance is also found all over the world, and has been on the increase.

So, we’re cleaning our act.  Here are some of the things which we’ll be implementing:

  • No BPA in our diet. This is going to be very very difficult. Plastic is everywhere. But at least at home, we’ll be getting rid of all plastics in the kitchen. How do we buy food that’s not been touched by plastic? This is not going to be easy.
  • No Pthalate.  Also, not going to be easy.
  • No teflon. When heated to higher degrees, it gives off noxious chemicals (PTFE). This includes my two very nice calphalon pans. Here’s a guide line from gov.ca
  • Bromine based compounds. PBB, PCB, PCDE.  This stuff is everywhere.
  • No triclosan. This stuff, in deodorants,toothpastes,mouth washes and anti-bacterial soaps etc, when combined with chlorine in tap water forms chloroform and dioxin which are probable carcinogen.  This is nasty stuff.
  • Clean drinking water.  I need to still research this.  If someone has some suggestions, I would appreciate some pointers here.
  • Juicer.  Again, any help would be good here.
  • Anti-oxidents.  Two that I am currently looking at are curcumin andresveratrol

Here’s another link that a good friend has forwarded to me.  This is an excellent site for information on cancer and potential causes.  This site is well worth a look.   Who would have thought that eating hot dogs will increase the chance of brain cancer in children? Nitrite based preservatives have been known to cause cancer since the 70’s.

Please take the 10 minutes to ready this. It should scare the heck out of you.  The CCC is US based, I wonder if there is a huge difference between US and Canada.

 

I am sure I will add additional info on this blog.

As a species, how did we get here?

Cycle III

oday, we start cycle III.  Already??  It’s a blur.

Chemo cocktails that are administered for this round are cisplatin and etoposide.  They are not very nice fellows.  Etoposide interferes with DNA unwinding and Cisplatin cross links to guanine in the DNA.  They both damage the DNA and when repair mechanism fails,  cell death (Apoptosis) occurs.

Side effects are not so nice.  Out of the six cycles of chemo, third and the fifth cycles are particularly unpleasant.

Please say a little prayer for Maya. This is a scary cycle.  On this cycle, Maya has to pee every two hours.

On the other hand, we have some good news.

  • GFR test came back and Maya’s kidneys are in good shape.  We need this since Cisplatin may damage her kidneys.
  • Maya’s primary tumor has  shrunk a bit.  We don’t know by how much.
  • Maya’s bone marrow is free of NeuroBlastoma. (Yay!)

[May 15, 2010 12:30]

We’re in our third day of Chemo. Maya is lethargic and cranky and only wants moma.  She is nauseous and very sensitive to smells.  She threw me out of the room for bringing in coffee.  She is on two types of antiemetics:

This morning, she also got Adavent for nausea.  She did not eat yesterday.  We’re going to have to try hard to make her eat today.  Not a cake walk.  Not so bad either. We hope that Maya will not have to deal with mucositis.

[May 16, 2010 6:30 PM]

Maya finished her chemo today. She needs to pee every two hours for the next 8 hours. Then, it’s every 4 hours. She hasn’t eaten anything today. She ate very little yesterday.  Maya is losing weight. She’s lost close to 5 lbs.  Two weeks ago, we were admitted at 16.7 Kg.  Today, she weighed in at 14.5 Kg. She’s been sleeping all day.

We’ll be home by this time tomorrow.  This is very good.  We’re all tired. We can all use some home time.

[May 17, 2010 9 PM]

Well…  we’re still here. Maya hasn’t been eating.  She hasn’t eaten all day today either.  Doctors don’t want to send her home until they see that Maya is eating and drinking on her own. Cisplatin and Etoposide makes Maya quite lethargic. They say that Etoposide leaves metallic taste in your mouth. It’s no wonder she’s not eating.

I came down on Maya.  You need to eat. You no longer have a choice.  “But, Daddy!!!”  It took close to an hour to get 1/2 cup of orange juice.  She wanted macaroni and cheese. So, Indira’s mom made it for her before she came for a visit. It took only two bites and everything came back up.  Our efforts were gone with a gag.

You need to eat!  If you throw up, that’s ok.  We’ll eat some more anyways.  Maya is not happy!

Maya, this is serious.  If you don’t eat, the Doctors will not let you go home. And you may have to have a tube go into your nose and into your tummy.  She does not like this option either. Neither do I.

For nausea, Maya was given Adavent tonight.  It works quite well as an antiemtic. But it also makes Maya very drowsy.  But, Maya is eating.  She had a slice of pizza and she’s eating some chips.  At this point, I am absolutely fine with this nutritional bounty.  And it must be a bounty for my little Maya’s body.  Thank you Maya.

We”ll have to try harder to get home tomorrow!

[May 18, 2010 6 PM]

Maya was given an approval to go home.  Her IV as disconnected and we were ready to go home.  However, four hours after being disconnected, Maya was put back on the IV.  The doctors decided that since Maya was not feeling well, they will keep her an additional day to ensure that Maya is hydrated.

So… we stay.  Maya has not eaten or drank much.

[May 19, 2010 9 AM]

We are going home today. The staff thinks we can go home.  If Maya does not drink or eat, they’ll hydrate her tomorrow at the clinic. The HSC is trying to arrange a nurse to come and provide IV drip at home.  This may or may not work out for tonight.

This is most welcome news.  At this point, even if we need to come back tomorrow, we need to go home.

Is this Right?

The more we’re involved in our journey with Maya and cancer, more uncertain I am that we’re doing the right thing.  As we’ve all heard many times, western medicine is all about fixing the symptoms and not the cause.  Yes, we have a problem. Maya is sick. Her cancer has spread to many parts of her body and it is life threatening.  And yes, we need to ensure that Maya’s cancer is stopped, reduced and eliminated. We are grateful that we have access to one of the best children’s hospital in the world.

But the cost to my little girl, our family and the society seems frightfully high.  Firstly there is pain both from cancer as well as her therapy. There is physical pain that Maya has to go through.  Maya had a very rough time this past week with hemorragic cystitis.  I am certain we have additional hardships to deal with. For example, mucositis will surely be something Maya will have to endure.  It is said to be extremely painful; A fine gift from  chemo.

There is emotional pain that we all suffer due to this disease. For Maya, it is being put in a surrounding where she is subjected to endless rounds of needles, tests and drugs from strangers. For us the parents, there is the anguish of watching a little girl go through it all.

For society, in terms of dollar figures, it’s also not cheap. While I do not know the dollar figures, I do know that in order to have Maya treated at Sloan Kettering hospital in NYC, the hospital wants a retainer of $300,000 to start.  It is then not unreasonable to ball park the cost of somewhere between 500K – 1 M dollars for a cancer patient.

And what do we get from this high cost? …

Makes me wonder.  All that is the wonder of modern medicine, it is not good enough!  It woefully comes up short. Is this right?  Is this really right?  I can only ask, where the crowning achievement in cancer is.  To be sure, cancer is a difficult beast.  It is highly idiosyncratic and highly individualized. Simply put, same cancer behaves differently in different individuals.   Response to chemo is also individualized.  One chemo might work in one individual and not in another.  One chemo might work on the primary tumor, but not on the metastasized (spread) tumor.  Cancer is a multi headed hydra in battle with a medieval champion.  And the battlefield is strewn with bodies of the casualties, young and old alike.

Still it makes me wonder if there truly is an appetite to solve this problem.  While I believe that the science organization is behind solving this problem,  science alone can not solve a problem of such a magnitude. It requires government and industry and medical organizations to come together. Does a multi-billion dollar industry want such a solution?  Cancer business only gets better year after year.  Is there a conspiracy?  Probably not. But I don’t see why any organization will want to participate fully in an activity that will bring about their own demise.

On the other hand then, what is the alternative?  I don’t know.  One only has to type “alternative medicine cancer” to find myriad of snake oils and quackeries on the web. Yet I do believe there is an alternative solution. I do believe there is/are solutions that do not demand a pound of flesh from Maya. There are just too many anecdotal stories of someone who’s been given days to live coming back cancer free.

Moreover, our environment is full of substances that compromises our body in an ongoing basis. Take for instance, plastic bisphenol-A.  It’s everywhere and there is a direct link to NeuroBlastoma.  Pthalate is another chemical abundantly found in our environment and is reported to be harmful.  If we are going to provide Maya with a fighting chance, we need to try to clean up her environment followed with providing the best nutrition possible.  No more crap food. As one father with a sick child (neuroblastoma) has said, “it can’t hurt but it can help greatly”.  I agree.

No gambling with Maya’s life.

More to come…

Stem Cell Collection

Yesterday, Maya had two minor procedures done.  The first was the femoral catheter.  This is a larger catheter placed in the femoral vein on her right leg.  For the stem cell collection, they need a larger vein for blood transport. The only reason why Maya’s CVL is not used is because larger catheters carry higher possibility of blood clots.  If the clot forms, it can be life threatening.

Before we have a surgical procedure is performed, there is a full disclosure.  Often the disclosures are quite scary as they provide the full spectrum of what can happen, including death.  When Maya’s CVL was placed, the disclosure was scary.  For the femoral line, it did not bother us so much.

Maya was also not too bothered as well.  For her CVL line, the anesthesiologist sedated her before taking her into the operating theatre. For the femoral line, Maya was jovial enough to be lead into the operating theatre without our presence.

The oncology team also performed another bone aspiration as well as take another sample of the bone marrow.  Simple follow up, they tell us.  We will get the results within next day or so.

When Maya woke up, she was in a bad mood.  Now she has two holes.  She did not like this at all. When we got back to her room, she settled down and by mid evening, she was in good spirits.

Currently [May 11, 10 AM], Maya’s stem cells are being collected. This process will take 7 hours. It consists of gathering 40 mL (less than 1/5 of a cup) of stem cells and 120 mL of plasma.  Plasma is collected to feed the stem cells. Maya is hooked up to a largish machine, (it’s like a dialysis machine) and her blood is circulated.

I was wondering what how they can extract out the stem cells only. It turns out that the process is trivially simple.  The machine will collect some amount of blood and it is put under centrifuge. Blood component separates by mass and you simply skim off the stem cells.  I am not sure what happens after the collection, but this is to be followed up.

Maya’s stem cell metric is 2.6 where as typically the practitioners see 0.8. So Maya has an abundance of stem cells. It’s likely that we won’t need to be back for additional harvest.  To be determined…

The amount of stem cells collected include what is necessary as well as some back up, just in case. If in a rare case Maya does not have enough stem cells, we will use the cord blood that we banked when Maya was born.  This scenario is apparently unlikely.

[Update 5:00 PM, May 11,2010]

Maya is bountiful. Maya collected enough stem cells for 10 transplants. We won’t need to go back for another round of harvest. The femoral line will come out today…

A Peek

When Maya is admitted at sick kids, life becomes hectic. Everything revolves around Maya. Even when Maya is well, as was the case during the second chemo cycle, it’s exhausting. With what?  Not really sure.   But there always seems to be something to attend to.  And there is always that going back and forth from home,  cooking (even if Maya won’t eat it), trying to give Indira a break and work. Taylor also needs to be looked after too. If lucky, I’m  in bed by midnight to be up by 5:30 AM.  This is ok. This is manageable.

When Maya is ill, things get exponentially more difficult. Fore mostly it’s physically demanding.  The illness does not respect the time of the day and lack of sleep is a norm.  Even just going to the toilet can be an exercise. You need to unplug the IV machine, pick Maya up, make sure no  lines are tugging and push the IV machine to the toilet. Let’s not forget that toilet exercise is a timed event. Like most children, when Maya has to go, she has to go. Her sense of urgency permiates through us.

Also, When ill, Maya needs or wants to be carried. The picture is not that of proud parent lovingly carrying a child.  It is a picture of desperation barely contained. It certainly was the case with hemorragic Cystitis.

Oral medication is another challenge.  Most of the meds do not taste very good. Trying to get her to take the medicine is a challenge. For example, Maya has to take one type of anti-biotic, septra, three times a week. Although the medicine has minty flavor, Maya hates it. It is mixed with Chocolate pudding so Maya can eat it. It’s more than a handful of times where Maya threw up that medicine which we ever so patiently got into her mouth.  It’s frustrating to see our efforts go wasted. Maya says she never want to have chocolate pudding ever!

Our microcosm here is encapsulated in the hospital setting with Doctors and Nurses. While it is true that the system is good, it isn’t without issues.  After all, you still have an organization with many people and you can’t always have top notch people at all levels.

Some of the residents makes me sigh. They are all about being technical. Clinical. They are eager to show their technical understanding of the subject matter. “We don’t want to give anything to Maya  that’s not necessary” one resident tells us.  But I guess it’s OK to give a child poison that will affect him/her for the rest of their life…. If you’re lucky. Yes, sadly, its pretty much the best we can get.

On the other hand, in staff physicians tend to be kind, sympathetic and human. As in other fields, senior people no longer have to prove themselves. Their humanity and kindness sometimes provide that little bit of hope and comfort we need.

Most of the nurses are fantastic here. They are the ones that provide the front line support. Good number of the nurses vest personal interest in these sick children. And when things don’t go well for the child, the nurses often share the suffering along with the family.  As cliche as it is, they are real heroes. As the saying goes, You do not want young Doctors and Lawyers. It is true.

It is still absolutely up to Indira and I to ensure that Maya gets the best care possible.  You can not expect others, even nurses and physicians to ensure that they will look out for Maya’s best interest.  We can only do our best.