Dear friends and family,
Gareth and I wanted to send you a quick update on Harry's situation, which Cynthia and Henry will elaborate on as soon as they're able. After doing further research on the experimental treatment that was mentioned in earlier posts, Henry was able to alert Harry's oncology team to the disadvantages that that treatment poses for a child with a compromised liver.
As a result of Henry's research, the oncologists determined that it wouldn't be advisable to proceed with the treatment. As a result, Henry and Cynthia are now following a treatment plan for Harry that our Winnipeg-based naturopath is directing in partnership with a naturopath in New Mexico.
Harry is sleeping a great deal, clearly conserving and harnessing his energies in this extensive healing process. Cynthia and Henry continue to be profoundly hopeful and deeply grateful for your prayers and meditations of gratitude and for healing, and we are as well.
Monday, July 28, 2008
Tuesday, July 22, 2008
Message from Cynthia and Henry
Dear Family and Friends --
Last Friday we received news that we really were not expecting. Harry is doing so amazingly well, we honestly thought the CT scan was going to show he was in remission or at the very least that we were ready to start our journey seriously exploring the transplant option at Sick Kids in Toronto.
You can imagine our shock at finding out that the cancer is no longer responding to the ICE/VAC chemotherapy combination.
The scan revealed that the one spot in his lungs has grown, not shrunk and there is an additional nodule. As well, there are several new spots in his liver and new clusters in his lymph nodes in his chest and stomach. So we are not back at the beginning but this is certainly a setback. No journey worth taking is without its challenges.
After regrouping on the weekend, we are feeling very strong and positive and full of hope and ready to face this next step in our journey of healing with Harry.
Now, more than ever, we need your most positive thoughts, prayers and meditations for Harry's complete recovery. We firmly believe that there is LOTS of room for God to work a miracle. We also believe that we are working in partnership with God on this and that the Divine responds to our most positive thoughts, intentions and prayers.
Please, no negative thoughts about Harry - he is such a strong little boy with a fierce will to live among us for a very long time. If you find yourself having a negative thought, please immediately cancel it and replace it with a wonderful, positive thought of Harry learning to ride a trike next summer, chasing his sister, or whatever positive image you can summon!
From the start we have known that we are dealing with such a rare cancer (there has been only one other Rhabdoid Liver Tumour treated in Winnipeg in 20 years) that we have been in the realm of the unknown from the start. That also means we are in the realm of unlimited possibilities - included unlimited POSITIVE possibilties.
Henry and I also strongly believe that while allopathic ('modern'/western) medicine is very powerful, it is not the only path to healing. There is so much that allopathic medicine does not know - especially in Harry's case.
We are pursuing several different new treatment options for Harry. First off, we will be starting a Phase I chemotherapy regime on Friday.
Harry will be given three new chemotherapy drugs:
Vincristine, Irinotegan, and Temozolamide
This chemotherapy regime can be done at home, so fortunately, we do not have to be in the hospital for this. The vincristine is given as a one shot dose and the Irinotegan and Temozolamide are given orally for five days.
Phase I clinical trials are generally done to demonstrate that a combination of drugs are safe to give together. Harry is not actually part of the Phase I trial - it is closed and the trial has demonstrated/established a 'safe' (in terms of tolerable toxicity) doseage for this combination of drugs.
In theory, this combination of drugs should have a good effect on Rhabdoid tumours. Harry will be the first patient with a Rhabdoid Liver Tumour to receive these drugs. So his doctors really have no idea what the response will be. However, he has responded very well to chemotherapy so far, so that is a good place to start from. He actually had the Vincristine as part of the VAC therapy, but it is thought to give a different response in combination with these drugs.
Phase I clinical trials are how cancer cures are found - so we are full of hope that Harry is going to make a major contribution to modern medicine by helping to discover a new treatment for Rhabdoid tumours.
In conjunction with chemotherapy, we are working with two natropathic doctors, one here in Winnipeg and one in New Mexico. We are currently working out an aggressive natural medicine regime to also give to Harry. So far we are giving him Rishi Mushroom and Green Tea extract, both of which have been shown to have very positive effects on cancer. Once we know exactly what his natropathic regime will be we will let you know.
Remember, hope and fear cannot co-exist. So banish fear and doubt and be full of joyous hope.
Henry and I both strongly believe that our souls come into this human existence for a reason and to love, laugh and learn through joy and pain together and in community. Harry's soul is on a very difficult path, but we pledge to continue to walk with him with grace, joy, happiness and love. So much love. We are honoured to walk this journey as Harry's parents.
Now is the time to open our hearts to the possibilities of Divine love and to let God's miracle of love flow through each of us, as it connects us all together.
Love,
Cynthia, Henry, Lydia and Harry
Last Friday we received news that we really were not expecting. Harry is doing so amazingly well, we honestly thought the CT scan was going to show he was in remission or at the very least that we were ready to start our journey seriously exploring the transplant option at Sick Kids in Toronto.
You can imagine our shock at finding out that the cancer is no longer responding to the ICE/VAC chemotherapy combination.
The scan revealed that the one spot in his lungs has grown, not shrunk and there is an additional nodule. As well, there are several new spots in his liver and new clusters in his lymph nodes in his chest and stomach. So we are not back at the beginning but this is certainly a setback. No journey worth taking is without its challenges.
After regrouping on the weekend, we are feeling very strong and positive and full of hope and ready to face this next step in our journey of healing with Harry.
Now, more than ever, we need your most positive thoughts, prayers and meditations for Harry's complete recovery. We firmly believe that there is LOTS of room for God to work a miracle. We also believe that we are working in partnership with God on this and that the Divine responds to our most positive thoughts, intentions and prayers.
Please, no negative thoughts about Harry - he is such a strong little boy with a fierce will to live among us for a very long time. If you find yourself having a negative thought, please immediately cancel it and replace it with a wonderful, positive thought of Harry learning to ride a trike next summer, chasing his sister, or whatever positive image you can summon!
From the start we have known that we are dealing with such a rare cancer (there has been only one other Rhabdoid Liver Tumour treated in Winnipeg in 20 years) that we have been in the realm of the unknown from the start. That also means we are in the realm of unlimited possibilities - included unlimited POSITIVE possibilties.
Henry and I also strongly believe that while allopathic ('modern'/western) medicine is very powerful, it is not the only path to healing. There is so much that allopathic medicine does not know - especially in Harry's case.
We are pursuing several different new treatment options for Harry. First off, we will be starting a Phase I chemotherapy regime on Friday.
Harry will be given three new chemotherapy drugs:
Vincristine, Irinotegan, and Temozolamide
This chemotherapy regime can be done at home, so fortunately, we do not have to be in the hospital for this. The vincristine is given as a one shot dose and the Irinotegan and Temozolamide are given orally for five days.
Phase I clinical trials are generally done to demonstrate that a combination of drugs are safe to give together. Harry is not actually part of the Phase I trial - it is closed and the trial has demonstrated/established a 'safe' (in terms of tolerable toxicity) doseage for this combination of drugs.
In theory, this combination of drugs should have a good effect on Rhabdoid tumours. Harry will be the first patient with a Rhabdoid Liver Tumour to receive these drugs. So his doctors really have no idea what the response will be. However, he has responded very well to chemotherapy so far, so that is a good place to start from. He actually had the Vincristine as part of the VAC therapy, but it is thought to give a different response in combination with these drugs.
Phase I clinical trials are how cancer cures are found - so we are full of hope that Harry is going to make a major contribution to modern medicine by helping to discover a new treatment for Rhabdoid tumours.
In conjunction with chemotherapy, we are working with two natropathic doctors, one here in Winnipeg and one in New Mexico. We are currently working out an aggressive natural medicine regime to also give to Harry. So far we are giving him Rishi Mushroom and Green Tea extract, both of which have been shown to have very positive effects on cancer. Once we know exactly what his natropathic regime will be we will let you know.
Remember, hope and fear cannot co-exist. So banish fear and doubt and be full of joyous hope.
Henry and I both strongly believe that our souls come into this human existence for a reason and to love, laugh and learn through joy and pain together and in community. Harry's soul is on a very difficult path, but we pledge to continue to walk with him with grace, joy, happiness and love. So much love. We are honoured to walk this journey as Harry's parents.
Now is the time to open our hearts to the possibilities of Divine love and to let God's miracle of love flow through each of us, as it connects us all together.
Love,
Cynthia, Henry, Lydia and Harry
Sunday, July 20, 2008
CT scan results
Dear friends,
This past Friday (18 July), Cynthia and Henry received the results of the CT scan that Harry had had last Monday (14 July). We're sorry to have to report that the results were not what any of us had expected, given Harry's stellar progress over the past 4 1/2 months. The CT scan shows that the liver tumors have increased and that the cancer has returned to Harry's lungs and his lymph system as well. Harry's medical team have concluded that the current treatment plan is no longer effective and they cancelled the round of chemo that had been scheduled to start on Friday.
When Henry and Cynthia have had a chance to think through the options now open to them, they will be posting a more detailed message. Please keep them all in your thoughts and prayers, as you are in ours.
Saturday morning: there's no slowing down Harry's spirit
This past Friday (18 July), Cynthia and Henry received the results of the CT scan that Harry had had last Monday (14 July). We're sorry to have to report that the results were not what any of us had expected, given Harry's stellar progress over the past 4 1/2 months. The CT scan shows that the liver tumors have increased and that the cancer has returned to Harry's lungs and his lymph system as well. Harry's medical team have concluded that the current treatment plan is no longer effective and they cancelled the round of chemo that had been scheduled to start on Friday.
When Henry and Cynthia have had a chance to think through the options now open to them, they will be posting a more detailed message. Please keep them all in your thoughts and prayers, as you are in ours.
Saturday morning: there's no slowing down Harry's spiritWednesday, July 9, 2008
At long last, an update on Harry
But just before Henry's report, some recent pictures taken on Sunday, almost at bedtime:
"I can't go to bed yet, Dad, Uncle Gareth and I need to play!"
Hugs are the best!
Lydia and Groovy Girl = two groovy girls!
"I just learned to climb the stairs ...
... by myself!"
And now it's really bedtime ...Henry's update
Rhabdoid tumours are very rare - they occur most commonly in kidneys yet make up only 1% of all kidney cancers, so the actual number of cases comparable to Harry's case is not documented, but is most likely exceedingly small and the report only refers to rhabdoid tumours generally.
The bottom line is we're pretty much in uncharted waters. The day after we got the report I found a scientific article in the Journal of Neuro-Oncology describing the case of a girl age 7 when diagnosed with a rhabdoid brain tumour. She is the first documented long-term survivor and what's quite amazing is the article specifically mentioned the role of complementary and alternative medicine (prayer, spiritual healing, vitamins, herbs and dietary changes).
I'm sure her parents were given a pretty bleak prognosis too. The report that we got last Thursday confirmed what we knew already - Harry's is a very rare and difficult cancer - what it doesn't capture is the enormous strides he's taken thus far, his joy of being, and his fierce will to live.
Last week Thursday we also heard back from SickKids hospital in Toronto - they will consider him for surgery if the next CT scan shows that the last remaining lesion on his lungs is gone. They have to be sure that the metastatic disease is under control before they will consider surgery. Now more than ever we ask for your prayers and meditations that Harry continues to respond to treatment, that the primary tumour on his liver continues to dissolve, and any metastatic lesions disappear.
Incidentally the girl who survived the brain tumour was taking the following supplements (many of which I'd never heard of):
essiac tea, pau d'arco, shark cartilage, Reishi mushroom, vitamins A, C, E, and B5, lecithin, manganese, potassium citrate, zinc, alfalfa herb, asparagus, black walnut hulls, dandelion root,dong quai root, kelp plant, lemon bioflavonoids, licorice root, marshmallow root, parsley, parthenium root, schizandra fruit, ginseng, thyme, uva ursi leaves, dimethylaminoethanol, ginkgo biloba, grape seed extract, L-glutamine, Melissa officinalis, slippery elm, flax seed oil, chamomile, fennel, feverfew, hops, passion flower, cleavers, red clover, stillingia, and prickly ash.
Harry's still nursing and between his diet and Cynthia's diet he's getting some of these supplements - I'm going to be discussing the longer list with our herbalist and naturopath this week. Any comments on these supplements are most welcome.
With much love to you all,
Henry, Cynthia, Lydia and Harry.
NB: Please note that we'll be posting the article that Henry mentions here in a few days time, so do check back soon for that.
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