Dear friends,
The following three reports from Cynthia were sent to us by Henry. In his covering email, Henry writes: "Cyn drafted these great notes for the blog. I'm amazed that she's able to do this - but she's absolutely right that the more detail people understand the better they're able to focus their meditations. Pretty good day today. Harry's keeping his feeds down and has been sleeping soundly - Dr. Israels, the oncologist, is pleased."
Our journey has well and truly begun.
Yesterday evening Harry had his first round of chemotherapy treatment. This first round will take three weeks total, but he will actually receive chemo drugs only for the first five days. The remainder of the three weeks are for his red/white blood cell counts and platelet counts to recover before the next round of treatment. We have no idea how many rounds of treatment we are looking at – but at a minimum we will be in the hospital for the first two rounds of chemo – or six or seven weeks from yesterday.
Perhaps I should back up a bit. It is still surreal that we are in this place and on this journey. We will likely never understand why we have been put on this path, but we choose to walk it with love, humility, and grace, holding Harry in our love all along the way. We are overwhelmed with gratitude at the love and support we have received from our family and friends near and far. And although we might not have had a chance yet to thank you personally, please know how very, very much your love, support, prayers, meditations, flowers and food are appreciated!
I look back at pictures from just a few weeks ago, trying to see what signs I missed, but Harry just looked like a chubby and cheery, beautiful little boy. From Feb. 14th I have a video of him walking around the house pushing his ‘hippo car’ and laughing joyously. As hearing, kidney and heart tests have shown, he is a very healthy little boy, who just happens to have some very big tumours to get rid of. The oncologist and the primary paediatric oncology nurse both commented on this fact early on – that Harry did not look like a really sick baby when he was admitted into the hospital. This is a good place to start the treatment from – he is strong and healthy otherwise, and not malnourished; many children present at the hospital with severe malnutrition. So he is beginning this journey from a very good place.
He started getting visibly unwell on Friday February 8th. That day at naptime, he vomited up all of his lunch. I figured he was getting the stomach flu. For the next week, he was sick every few days, usually at lunchtime, often right after eating, but not every meal and no more than once a day. He had a mild fever, but nothing over 101 C. But he was starting to get listless and very clingy. It was the first time his dad was away overseas for a long trip, so I wondered if the separation anxiety, classic for 10 months of age, was just a result of missing his Dad. When Henry came home from India on Feb. 14th, he too noticed that Harry didn’t seem to be himself. I had wanted to take him to the doctors on Saturday the 16th, but the office was closed for the weekend until Tuesday the 19th for the holiday Monday. So I waited till Tuesday the 19th. That first doctor didn’t check his tummy (or I don’t remember if he did) and sent us home with assurances it was just a virus and that Harry would get better. Well, Tuesday and Wednesday nights he was up every 2-3 hours to nurse and I just knew something was wrong. So on Thursday I was able to make an appointment with our family doctor for Friday the 22nd at 16:00. Friday morning I weighed Harry and realized, shocked, that he had not gained any weight since the New Year and I had lost about five pounds (I think as a result of the extra nursing he has been doing over the past month as the tumours were growing and reaching a critical threshold). I knew something was wrong and fortunately Henry heard the concern in my voice and decided to come to Harry’s doctor’s appointment too.
After a few questions our family doctor examined Harry and stopped short when he felt his tummy. He immediately said, “Oh, Mum, do you feel that? That shouldn’t be hard like that”. Then he said, “You need to go right up to Children’s Hospital and have an ultrasound of his liver”. He called the paediatrician on call at Children’s Hospital Emergency to let them know we were coming. We quickly walked home, in shock. We picked up a few things for Harry to take to the hospital – his Lovie blanket Benjamin the Giraffe most importantly – and a few things for a sleep over (her first ever) for Lydia at her friend Natalie’s house.
And so the maelstrom began. We were admitted very quickly into Emergency (within 20 minutes). Friday night they did a number of blood tests and a chest x-ray. The initial blood tests showed some abnormal liver function, but no leukaemia. At first they thought it might be a problem with his heart and restricted blood flow to the liver. The chest x-ray did show some ‘fluffiness’ in his lungs – which they thought could be pneumonia. We were admitted to the hospital that night. Saturday was an agonizing day of just waiting for them to figure out what to do. They had talked about consulting with a cardiologist, but at one point in the day a gastro-intestinal specialist saw him and insisted that we needed to focus on his liver. Sunday morning Harry had a CT scan, and by around noon we received the devastating news that Harry has a massive tumour (number of tumours actually) on his liver and had spread also to his lungs. We sincerely hope that that Sunday - February 24th 2008 - will have been the worst day of our lives.
Sunday evening we were moved up to the 5th floor – the paediatric oncology ward. I’m not sure any more exactly, but I think it was Monday we met with Harry’s primary oncologist, Dr. Jayson Stoffman, who gave us some more details of what we are up against. The cancer is a stage 4 liver cancer, meaning it has metastasized and has spread to the lungs and lymph nodes. The oncologist told us that the bigger tumours are often the hardest ones to find – your hands run over them and don’t feel their edges. This tumour has likely been growing in Harry’s liver for several months – and he growing with it. So for us it just looked like a nice, normal, chubby baby belly and why it was difficult to actually notice.
The next step was a surgical biopsy to remove some of the tumour for identification, the insertion of a weighted NG feeding tube, and a central line into his chest – a line that goes directly into a big blood vessel in his chest and has two lines ‘out’ (of his chest) through which they can both draw blood and give fluids / chemo.
Harry did very well in the original surgery on Wednesday the 26th. He was in a monitored bed all night (monitored by a nurse all night) because his oxygen saturation levels in his blood were low. He has been on oxygen ever since – every time he seems to be doing well enough to take him off oxygen he has another procedure and they want him back on ‘just to be sure’.
Then the waiting began for the biopsy results. In the meantime, however, we did have things to do in preparation for chemotherapy. Essentially, a number of baseline tests, against which to monitor Harry’s reaction to the chemotherapy. The first test was a set of hearing tests with an audiologist (his hearing is flawless). The carboplatin drug (see below) is hard on hearing and Harry will likely have some high frequency hearing loss – but less than he would have had had the cancer been a hepatoblastoma (and requiring different treatment drugs) – but no less than what his dad currently has now from listening to rock music too loudly for so many years! Next a test on his kidneys to determine his kidney function (again excellent), because some of the treatment drugs are hard on the kidneys so this will need to be monitored as we go forward. Finally, a visit to the cardiologist for an ultrasound of his heart and an ECG (his heart is normal and very healthy and strong).
Originally, they thought from first examination that the tumour was a hepatoblastoma, a type of developmental childhood liver cancer. The samples were examined by 3 pathologists here in Winnipeg and 2 liver cancer experts at Baylor University in Texas and after 8 days of study and agonizing days of waiting finally on Thursday March 6th, were given the final results of the biopsy.
One small bump in the road, just before we got the biopsy results, was that the original central line was found, after several days, to be leaking. The nurses had been having trouble drawing blood from the lines and there had been some leakage from the insertion site. One of the nurses and one of our oncologists were concerned – because they wanted to make sure the line was 100% before starting chemotherapy. They insisted on a test on the line (can’t recall the official name of the test, but they inject a dye in the line and watch, via x-ray, for leakage). Indeed they found, on Thursday morning, that the line was leaking and scheduled him for surgery the very same day to have a new line inserted. So in another stressful turn, Harry had to have a second surgery on Thursday (March 6th) to remove the original central line and insert a new one on the other side of his chest. He made it through that surgery with flying colours. But just after we had said goodbye to him to go into surgery, our oncologist found us and informed us that we had biopsy results. So while waiting for Harry’s surgery we found out the news we had been waiting for …
Harry has a very, very, very rare form of cancer called a Primary Rhabdoid Tumour of the Liver. Rhabdoid tumours (named for the shape of the tumour cells I believe) are most commonly found in the kidneys – they form only 1% of all kidney cancers. Next most commonly they are found in the brain. In 20 years they have treated five Rhabdoid tumours (of all kinds) at Children’s Hospital. On a very positive note, one of those cases was a 2-year old boy (I believe) at the time and he also had a Rhabdoid tumour of the liver and he is now a healthy 18-year old man. Rhabdoid tumours are very aggressive and fast growing. In almost all cases (certainly all the cases they have seen here) when they are found they have already metastasized.
Henry read somewhere on the Internet that this type of tumour was only identified in 1978 and there have been something like 50 cases in North America since then. Not sure if those numbers are correct or not, but essentially, we are dealing with something where numbers and statistics no longer matter - not that they ever really did to us – we don’t want to focus on statistics (I hate stats anyways). For us, the only thought is that Harry is on a journey back to wellness and we will step one day at a time, celebrating the small victories along the way each day.
One of our other thoughts is that, “Oh shit, now we have to worry about being hit by lightening, because that is, apparently, more common than this …”.
Anyway, the treatment has been established for 10-years and so we are not in the realm of experimental treatment; there is a standard protocol. However, much will depend on how Harry’s tumours respond to treatment. This first round of chemotherapy consists of three different drugs:
Ifosfamide -> I
Carboplatin -> C
Etoposide - >E
Otherwise know as ICE.
These three drugs will start to shrink the tumours. The next round of chemo drugs will depend on how this first round goes. These drugs are very hard on bone marrow, especially. Harry will need blood transfusions and will likely get some type of infection.
So for now, we ask that everyone pray and meditate on this round of chemo successfully beginning to shrink the tumours and envision those tumours responding very well to the chemo and shrinking.
Some people have asked us about the care we are receiving here. In two words: excellent and first class. From the head paediatric oncologist right down to Sergio the very kind gentleman who cleans our room each day, we have been treated with utmost kindness, respect, and professionalism. The Children’s Hospital in Winnipeg is part of a North-America wide Children’s Oncology Group – a network of several hundred Children’s Cancer Hospitals. This group was established a number of years ago, recognizing that cancer in kids is so rare that each hospital can’t fight this on their own – they need to share and pool resources. So we have access to the same treatment information and care as we would have at Sick Kids in Toronto, the Mayo Clinic in Rochester or Mount Sinai in New York City.
This is why Harry’s biopsy samples were sent to Texas for an outside expert opinion. The liver specialists in the COG are there and they have access to at least one test that they didn’t have here in Winnipeg. So the final confirmatory diagnosis came from that final test. Our oncologists can consult with experts in this entire network in designing Harry’s treatment plan and have access to research information from throughout this network. So we are very fortunate to have access to the state-of-the-art in care right here at home.
Tonight I am with Harry at the hospital; Henry and I alternate nights. Harry is almost done his chemo for today. He was more nauseous with this second day – we had to give him some extra medication to help him overcome nausea. But now he is sleeping and I should too.
We ask you to hold Harry in your prayers and to keep sending him so much love. Harry will beat this - no matter what we face, we will not give up hope that he will return to full health.
Love to all,
Cynthia (and Henry and Lydia and Harry).
On Systems and Catastrophic State Changes
Okay, I know some of you will think I am nuts to be thinking about things like this at a time like this. But I can’t turn off the ‘researcher’ part of my brain. That part of me has been observing at a small distance and thinks it has learned something, already, about social-ecological systems from wee Harry’s experience.
As a small digression, last week we had a visit from a truly wonderful energy healer, Jennifer. She did some energy field work with me, and through me with Harry. Two of the things she told us were, first that no matter what we are told we are not to give up hope. Second, her teacher was able to sense Harry’s energy very clearly, and felt that his sickness and healing are related, in part, to the sickness and healing of our Earth.
As a researcher, I study complex adaptive systems. The human body is one exquisite example. Our planetary social-ecological ecosystems are another. One defining characteristic of complex adaptive systems (CAS) is rapid state changes; otherwise known as catastrophic flips between system states. A system appears to be chugging along happily in one system state, but then, seemingly all of a sudden, one system variable reaches a critical threshold, and almost magically and instantaneously the system ‘flips’ into a different system configuration.
I have understood this ‘theoretically’ for a number of years. But now I truly understand what that means, having just witnessed such a catastrophic state change in my son. As I have said earlier, I have been wracking my brain, trying to look back at what signs of illness I have missed. There were perhaps very small signs, but not something that would lead one to think, “My child must have a very, very, very rare form of liver cancer. I must get to the hospital right away”.
Harry has always had a broad chest (from his dad) and a chubby belly (what healthy baby doesn’t?) But, perhaps, if we hadn’t been seeing him every day of his life, we might have noticed that his belly was getting bigger than ‘normal’ for a 9-10 month old. Alas, we were not lining him up nude with a sample of other, similarly-aged boys for comparison. Although no one that ever saw him said to us, “Boy that kid has a really, disproportionately, chubby belly, you should get that checked out”.
He had been nursing more at night than usual the past month – waking twice at night instead of his usual once at 4-5 am. But he was crawling and starting to walk, so I figured it was just a growth spurt. But there really were no obvious, visible, outward signs that he was ill until early February.
And that is how catastrophic system changes look. Everything looks ‘fine’, but under the surface, one system variable (or maybe several, but usually not many) is slowly accumulating, inching towards a ‘tipping point’. The thing is, we have no idea how close we are to the tipping point till we actually cross it. For Harry, it was his liver reaching a critical threshold where its malfunction overwhelmed all of the other positive system functions in his body. (Which we need to always remember ARE all still very positively functioning systems).
This might seem like a stretch, but my mind works across scales like this. And Harry is going to teach us about healing the Earth.
So for all of the global warming naysayers out there, who think we can continue to pump CO2 at will into the atmosphere with no consequence because, “Well, everything looks fine”. Quite possibly it is not, quite possibly Earth is ever inching towards a critical threshold. It can really happen. And when the system flip occurs it won’t be gradual and smooth and clean. It will be sharp, abrupt, and messy. Given the scale of the planetary social-ecological systems that ‘state change’ likely will be longer than the 2 weeks it took for Harry’s system to exhibit significant change, but it likely will be just years not decades.
We had no warning that Harry was going to get ill (well, I did have feelings and intuitions, but more on that another time). However, we do have very loud warnings about the health of our Mother Earth. The question now echoing more loudly than ever in my mind is, “Are we going to listen?”
Peace and love,
Cynthia
Day Three of Chemo
Well, today is day three of chemo. Harry is done the first drug – Carboplatin – and now continues with the other two drugs for three more days. The chemo takes several hours to slowly drip in via IV into his central chest line. He gets a cocktail of other drugs: anti-nauseants, drugs to protect his kidneys and bladder from the effect of the chemo, drugs to make him pee and poop.
The first day he started chemo late – at 5 pm. Yesterday we started an hour earlier and today will start an hour earlier again. It also won’t take as long, because he is only getting two drugs instead of three. The first two days the chemo took over 4 hours, as each drug had to drip in separately and take at least an hour each. A number of the drugs they give him (including small doses of morphine for pain management) make him sleepy, so he is sleeping a lot. This is good. He needs to sleep to conserve energy and heal.
I saw the head oncologist this morning and she said they are pleased with how well the chemo is going so far, particularly that he is keeping his feeds down. Harry’s fluid retention is up – but that is to be expected, because they have to pump in fluids to help wash one of the chemo drugs through his system (they don’t want it sitting in his bladder and kidneys too long). He has been retaining fluid in his belly and lower body (legs) since about 2 days before his first surgery. The nephrology team has been working very closely with the oncology team to give him a number of drugs to help eliminate fluids. It had been working well. Harry gained 5 lbs of fluid from when we were admitted to last week Wednesday. On Friday (March 7th) am he was down two pounds (they weigh him every morning). But his weight is back up with the fluids he needs for chemo – but we pray that his body will continue to respond well to the fluid management drugs once the chemo is finished.
On a positive note – his belly measurement was down 1 cm today – which is very good news and something we rejoice in today!
He will be getting a red blood cell transfusion today. His hemoglobin is down – likely a result of them drawing blood every day for tests. But this is also another way of managing fluids. The extra red blood cells in the tissues helps to ‘push fluid’ out of the tissues, and it comes (the blood transfusion) with another diuretic, which will help pull off more fluid. His oncologist is pleased with how much he is peeing, which is good too.
So, so far chemo is going well, Harry is responding well, and we are hanging in here. We are feeling relieved to be actually moving on with treatment. It feels good to be doing something to really start his healing.
Please continue to pray and meditate on the chemo working well, shrinking his tumours, and for all of his other systems to keep responding positively.
Harry’s room is south-facing and bathed in our wonderful Winnipeg winter sunlight. This is a beautiful reminder to me to keep positive and keep feeling the light and love surrounding us.
Peace and love,
Cynthia
Harry couldn't have been happier Sunday afternoon, unhooked from all his tubes and able to hang out in the playroom for a change.
