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