Today, we started chemotherapy.  We have been ennundated with information regarding NeuroBlastoma in the week that we’ve been here.

While we’ve been reading the technical aspect of chemotherapy, connecting what’s been presented and what we can expect from Chemo is not so obvious. For one, cancer as well as the effect of chemo is highly idiocyncratic.  What works in one patient may not work in another patient. The effect of Chemo on one tumor in the body may not work if the cancer has spread (metastasis).

We were nervous about starting this process.  First two steps was to give Maya blood.  Since chemo will reduce the blood count, they topped up the blood before chemo was administered.  Second, they also started with anti-nausia drug.

When finally chemo started, it was a little anti climactic.  Clear fluid in a small pouch was all there was. It dripped into Maya’s CVL and that’s all there was to it.  Mind you, the nurses were more dramatic. Anytime they came to handle the bag, they dawned up a special gown to ensure that they do not get exposure to it.

Once the chemo starts, we need to keep Maya peeing regularly.  Maya needs to flush out the chemo in her bladder or otherwise, it will damage the lining of  the bladder. In future when higher doses of Cyclophosphamide is administered, an additional drug is given to coat the bladder lining so that the chemo will not damage her bladder.

Day one was uneventful.

First Procedure

We did have a nice and quiet weekend.  By friday evening, Maya’s pain was well under control. Other than an occasional pokes,  we managed to have some type of rest over the weekend.

Over the weekend, we had informed both sides of the family.  For me, I decided to tell my parents and my sister over the phone.  I wanted them to digest the news first and not freak out on me at the hospital.  My sister monica took it hard and she didn’t want to come to the hospital.

Indira decided to gather her side of the family on saturday(?) and had one of the oncologist deliver the news. They were given more detailed information from the oncologist. They were hit hard with the news.

I think abuelita (indira’s mom) took it hard.  Maya is her first grandchild.

On monday, there were three procedures that were being done.

The first is the CVL.  This is a catheter that is put under her skin and is used for all sorts of stuff. Also, to deliver chemo, larger vein is required as smaller ones will collapse. Maya dosn’t need to get any additional “pokes” as saline and other medicine can be delivered through CVL.

In layman’s terms, a catheter is inserted into Maya’s jugular vein and travels down to her heart and sits just outside the atrium valve.  They want the catheter to be just outside the attrium to reduce the chance of the catheter going into either one of the veins in her arms.  So, one end is just outside the heart and the other end, where the drugs will be administered sits under the skin just above her right nipple.  This approach also reduces chances of infection near the heart.

The second procedure is the biopsy.  Because we gave consent to collect additional mass for study, the surgeons removed 14 samples from the tumor.  Both the CVL and the biopsy was conducted by the surgeons from IGT, where the surgery is assisted by live image feed.

The third was the bone marrow aspiration.   Oncology team performed this task.  Of the three procedures, bone marrow aspiration was the most simple.   Again, because we chose to enroll Maya into the research procedure, the team took out 10 ml of bone marrow.  Out of 2 hours that Maya was under, bone marrow aspiration only took 15 minutes.

After the procedure, the surgeon told us that everything went very well and we picked Maya up from the PACU (Post Anesthesia Care Unit ?).  Maya was groggy and was extremely cranky.  She was swinging and kicking at the nurses.  One of the older nurse did not appreciate this behavior.  I could only smile inside.

You go Maya!!!

We got confirmation Tuesday that Maya had NeuroBlastoma and that the bone marrow was also affected.   We start Chemo this wednesay.

Initial CT Scan

CT Neck, Chest, Adbomen, Pelvis with Contrast (March 26th, 2010)

Clinical History:

4 year old child with abdominal mass. Multiple lymph nodes and spinal metastasis.


Axial images of the neck, chest, abdomen, pelvis were acquired after IV contrast administration.



There are a few small sized lymph nodes in both the jugular chains. The largest on the right side measures 11×12 mm while that on the left side measures 7×7 mm.


An oval heterogeneously enhancing nodule is seen in the right cardiophrenic recess abutting the IVC – RA junction. It measures 16×13 mm in transverse dimension. There is no significantly enlarged lymph node or mass in the mediastinum. Both axillae are clear.

There are bilateral pleural effusions; left more than right. Patchy opacities are seen on the posterior aspects of both lower lobes, left upper lobe, hilar and perihilar regions. The opacities likely to represent atelectatic changes. There are more nodular air-space opacities in the left lingula anteriorly. A small irregular nodule (3 mm) is seen in the right apex (Series 4/ima 17). It is difficult to exclude any nodular densities in the areas of patchy opacities. A small pleural nodule is seen in the posterior recess on the right on image 43 of Series 2.


A large heterogeneously enhancing mass is seen in the right suprarenal region. Craniocaudally, this mass extends from the diaphragm up to the mid pole of right kidney. It is seen extending into the right lobe of the liver. Medially it extends across the midline displacing the head of the pancreas and vessels to the left side. Anteromedially, it extends up to the porta and surrounds the portal vein. Inferolaterally, it invades the hilum of the right kidney and upper pole. Direct invasion of the liver and right kidney cannot be excluded. In fact, there are areas very suspicious for direct invasion. The kidney is displaced inferolaterally. It encases right renal artery and vein. It encases IVC and lifts it anteriorly. It shows a few specks of calcification in the center. It measures approximately 8.6×7.6×9.1 cm in RL by AP by SI dimensions respectively. Multiple nodular masses are seen, suggestive of metastatic lymph nodes, in the retroperitoneum and retrocrural region. The largest retrocrural lymph node measures 14 x 22 mm, the largest lymph node at the left renal hilum measures 26 x 38 mm and the largest in the left para-aortic region at the aortic bifurcation measures 21 x 29 mm. Some of these enlarged lymph nodes show specks of calcification within them. Lymph node masses encase the left renal artery and vein, IVC, aorta and displace pancreas anteriorly. A short segment of the left renal vein in the midline is not clearly opacified. A small lymph node is also seen in the right phrenic region measuring 10×5 mm.

A small hypodense area is seen in the cortex of upper pole of the left kidney (Series 2, image 53). This likely represent a tiny cyst rather than invasion from adjacent enlarged lymph nodes. Ultrasound is recommended for further evaluation. A small splenule measuring 17mm is seen at the splenic hilum. Spleen, pancreas and gallbladder are grossly normal. The left adrenal gland is not well seen but may be thickend. Bowel loops and urinary bladder are unremarkable. There is trace of free fluid in the pelvis and right flank.


Multiple ill defined lytic areas are seen involving the entire spine, pelvic bones and scapulae. There are also subtle areas in the sternum. There is multi-level reduction in the height of vertebral bodies. The maximum reduction is seen in the T5 vertebral body.


  1. A large heterogeneously enhancing mass in the right suprarenal region with multiple enlarged retroperitoneal lymph nodes. The mass is most likely to represent neuroblastoma. Morphology and extent are described above.
  2. A nodular metastatic deposit in the right cardiophrenic recess. Multiple patchy opacities in the lungs that could represent atelectatic changes limiting the detection of any discrete nodular density. A single 3 mm nonspecific nodule is seen in the right apex.
  3. Multiple lytic lesions in the vertebral column, pelvic bones and scapulae in keeping with metastatic bone disease. Multilevel reduction in the vertebral bodies with maximum reduction at T5 level.


First night at sick kids (March 26,2010)

It’s a tough night.  Jesus…. It’s getting very late, or very early.  Dosn’t matter.  Both Indira and I are staying in the room.  Maya is in a lot of pain.

We’re on the 7th floor at Sick-kids and were given a room.  There’s been a few needles already and Maya isn’t taking the needles very well. Poor little girl.

Because of the back pain, Maya was given Morphine. It’s on continuous and the Dr’s have up the dose 3 times. She started out at 20 Mg / Kg and by morning she was at 40 Mcg / Kg.  On top of that, she was given tylenol and motrin for the pain.

By 4,  5M, Maya is moaning every 5 minutes.  Even with all the meds, Indira had to help Maya breath through the pain.  I kept few of the times just to keep track. The Pain Level (out of 5) is subjective assessment of the amount of pain which I thought Maya was feeling. The level was based on the moan that Maya made and how Indira was helping with breathing.

Time Pain Level Time Pain Level
5:14 AM 4 5:19 AM 3
5:26 AM 3.5 5:32 AM 4
5:39 AM 1 5:45 AM 1
5:51 AM 3.5 5:57 AM 3.5
6:03 AM 3.5 6:15 AM 1
6:15 AM 1 6:18 AM 3.5
6:38 AM 1.5 7:00AM 3.5
7:06 AM 2.5 7:14 AM 2.5

By 7 AM, we were both exhausted.  We were both in a daze from the night.  Around 10:30 AM, Maya had her Ultrasound.  Being the geek I am, I was asking the technician about what I saw on the ultrasound. However, after a couple of attempts, and not getting any response from the technician, I gave up.  At this point still we had no idea.

What got me a bit more concerned was that at one point in the process, the technician left and returned with a doctor.  Both were talking in a hushed voices and pointing to some amorphous body in the scan.

We finished the ultrasound and returned to her room around 11:30 AM.  Within an hour, the senior resident Dr. Friedman came to our room and started to tell us the findings.

We found a tumor around Maya’s right kidney. It is just below the adrenal gland and above her right kidney. The tumor is pushing against the liver and the right lung a little but, it is not thought to be a cause for concern.  As he was telling me this, I was thinking “OK… now say the word benign” .  That didn’t happen. Instead he said it was cancer.

I don’t recall my of what else he said.  I was looking away from Maya, facing the Doctor. I think I was crying.


First consultation (March 26th, 2010)

Dr. Friedman said that he is sorry to have brought us such a devastating news, but he found that most families want to know as soon as possible about the news of their loved one.  He was right.

The news was something which we couldn’t really comprehend at the moment.  I didn’t really know anything about cancer.  What we knew of it was embarassingly little.  When talking about cancer, we only knew  that there is a tumor and it can spread to bones.  And spreading was bad.  Treatment was as bad as the disease.

Later in the afternoon, we had our first consultation with one of the oncologist by the name of Dr. Paul Gibson.  The first thought in my head was, What a name… Does he play the guitar?  That question never made it through my lips.

The consultation was a high level overview of what to expect in the coming months.  In a daze we tried to take in as much as possible.   A little thing that struct me was how polished his delivery was.  Dr. Gibson was sympathetic, understanding and hopeful.  I thought my goodness, this fellow has gone through this session many many times.  That made me sad for all other families.  We were glad that there was a Dr. Gibson who could deliver this message in such a way.

What I recall are:

  • Maya’s tumore is most likely NeuroBlastoma.  While they can’t  be sure, it sure looks like it from their past experience.
  • Based on what was known about Maya’s condition, Maya is considered High Risk, Stage 4.
  • He has been coordinating different departments to get additional imaging, MRI and CT Scan done.  (Coordinating these two scans is not an easy task because they are different department and each department have their own schedules)
  • Sick-kids approaches Maya’s disease with the intent  for complete recovery.
  • We need to be positive. It’s not going to be easy.
  • Dr Gibson was also reticent to provide too much information as it tends to over load and overwhelm the parents.
  • Sick kids is part of the Children’s Oncology Group (COG). Most of the children’s cancer groups across US and some European countries participate and share informations.
  • Sick kids also asked for Maya to provide some of her tumor and bone marrow for research purpose. Later when I asked how much of the current knowledge is based on the research from the previous children, we were told (Dr. Gupta) 100%.

After thinking things over the weekend, we consent to providing biopsy and bone marrow sample for research purpose. To all the parent and children who participated in the research, we thank you from the bottom of our hearts.

Because it was friday, we needed to wait until monday for the scans.  There were three procedures scheduled for Monday. Since Maya was going to be under the general anathesia, three departments had to be coordinated to get it all done. Thanks to Dr Gibson for coordinating this (non trivial) task.

CVL (Central Venus Line, AKA pic-cath, Hickman port) This is a catheter that is placed in her suprior venus vein.  This is the major vein returning blood to the heart.  This line is used to deliver the chemo.  Chemo is so hard on the veins, it can not be delivered through smaller veins such as the ones in your arm. “The veins will blow out”.

Secondly,biopsy. The surgeon will take 14 samples of the tumor entering from the back.

Thirdly, they will perform the bone marrow asperation.  Basically the surgeon takes about 2 tsp of marrow from Maya’s pelvis.

But until monday, we were to have a very uneventful weekend.  We were very happy to hear that.

Also, thankfully Taylor was away this weekend. I was thinking how to deal with this news with Taylor.

Visit to Sick-Kids (March 25, 2010)

Ok… so Maya’s back pain has been getting progressively worse. So, we’ve come to sick-kids to try to find out what the heck is going on with Maya.

In the morning, dad tried to put Maya on her feet and Maya screamed out loud and dropped down on her back. She was in a lot of pain. For sure she’s not making this up.

By the time we got to sick-kids, Maya was crying a lot. The day was spent in the emergency trying to figure out why Maya was in pain.
The first was to get an X-ray taken. And all we can do is wait and wait. By late afternoon, we found out what was causing her pain. Good! At least we know why. Maya has something called compression fracture on her back; Namely on T9 and T5. OK… so, we should be able to get the treatment and that’s good!

At the back of my mind, I think well, how did she get the compression fracture? It could be something but I’m sure we’ll be OK.
Late in the afternoon, residents from hematology and oncology came by and asked a bunch of questions.

  • Has Maya had any fever lately?
  • Has Maya fallen lately?
  • Is she eating well?

They were asking typical questions that any doctors would ask. Just the fact that these questions were being asked by Hematology and Oncology residents made us uneasy.

Early evening, we were checked in.
Sigh… OK. I guess we’ll be staying the night.