In the middle of the journey

Dear friends,

We're posting the following message from Cynthia with the promise to intersperse a variety of great pics taken over the past week and a half very soon! We thought that for now, you'd appreciate this update. Tune in again soon for the visuals ...

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I realized the other day that we are no longer at the beginning of this journey of healing with Harry.

Somehow, we have made it 'to the middle'. We don't have a clear sense of whether we are at the beginning of the middle, the middle of the middle, or the end of the middle, but we no longer feel like we are just starting out. It feels like we are in the thick of the journey.

Or perhaps a more apt description - it feels like we are swimming across a large lake - we are now somewhere in the middle of the lake - we can no longer see the shore of our departure - but our destination - the other side - still lies beyond the horizon. We're treading water, exhausted, but knowing we have no choice but to swim on. We can't go back to where we started, but the end of the journey seems so very far off. As we swim we are alternatively demoralized at how far we have yet to go and yet, at times, exhilarated by how far we have already come.

We will get a bit more of a sense as to where we are at next week. On Tuesday May 27th, Harry has his third CT scan. We fervantly pray that this next CT scan will continue to show amazing healing. By touch, Harry's oncologist can tell that the liver tumours continue to shrink. His energy, colour, and spirit are all so wonderful, that we are sure his lungs and lymph nodes must be clearing up more too.

We ask for your continued prayers for healing for Harry and that the CT scan will show that his liver tumours continue to shrink away and that his lungs and lymph nodes are now clear and tumour free.

The results of the CT scan will tell us whether we go for more chemotherapy. The next round will be a six-day ICE treatment, starting on Friday May 30th - should we need it. The very, very best case would be the CT scan would show Harry is completely healed. Seeing that we can still feel his liver (you're not supposed to be able to) this is a long shot. But we do believe everything and anything is possible! The next best case would be that the lungs and lymph nodes are clear and we can now go for surgery to remove the remainder of the liver tumours.

We will keep you all updated as to how the CT scan goes and the results - which we should get on Friday May 30th.

Our days have taken on a rhythm and routine now. Tuesdays and Fridays are Cancer Care Manitoba clinic days. Harry gets his blood counts checked, his central line dressing changed on Fridays and a new feeding tube every couple of weeks. Every day, for about 10 - 14 days after chemo, a homecare nurse comes to the house to give Harry a "GCFS" needle - a drug that helps encourage white blood cell regeneration. He is so good about the needle - only cries for a second or two after it is given.

Then there is the bloody feeding tube - my least favourite part. Harry has to be on the feeding tube for 7 hours a day. It is such a huge pain in the neck. I try to hook him up during naps as much as possible - but I need to reduce his naps time to try to get him to sleep more at night. So we spend a lot of time dragging the IV pole around the house / the front sidewalk. He isn't really interested in eating food. So he gets pretty much all of his nutrition by the feeding tube (plus he still nurses about 4-6 times a day). He still has nausea, so vomits after every few feeds. Yuck. Poor little guy. We are doing a lot of laundry these days. If he didn't have the feeding tube this would be so much easier. It takes up a huge amount of our days and limits so much of what we can do in a day. I wish he would start to feel well enough to start eating again so we could get rid of it. That will be such a wonderful day - the day his feeding tube comes out for good - I can't wait!!!


Harry's quiet, joyful and playful spirit continues to be our guide. He can now climb our stairs on his own (well with one of us watching like a hawk - we have very steep stairs!), and is furniture cruising more and more. He likes to use his IV pole as a 'walker' - cute - but not exactly how I envisioned my son learning to walk. But hey, that's adaptation right?


He loves to go to the park for a swing or a slide. He is also getting better at riding his blue horse and driving his 'little red car'' outside. It will be wonderful when he can walk.




Lydia has another few weeks left of dance class - her big recital is coming up on June 9th at Centennial Concert Hall.


Soccer runs on Tuesday and Thursday nights until June 19th. Kindermusik is done for the year. Lydia wants to continue with dance, music and acting classes in the fall. Somewhere in there either this summer yet or in the fall we need to get her into swimming lessons again. She is a reluctant swimmer - like I was, but for safety's sake she needs to learn. (Kind of ironic given that her absolute favourite game right now is "beach" - she sets up all of her beach stuff - and I mean ALL in various rooms of the house - I'm trying to contain her to her 'laundry room / play room' - I'm getting tired of the living room being turned into the beach).


So between Lydia's activities and Harry's life we are pretty busy. Did I mention we're exhausted too? Harry has trouble sleeping at night still. He is up at least once, but usually twice at night to nurse and every few nights (maybe as often as every other) he has a really hard time getting back to sleep - so he is up for about 2 hours trying to get back to sleep. He likes company, Mummy's company, Mummy would much rather sleep than sit on the stool beside his bed and hold his hand as he tries to sleep! But we just don't feel right about letting him learn to go to sleep on his own right now - he's going through so much. But boy oh boy, we dream about what it will be like to get a solid night of sleep on a consistent basis once again!!!

Our continued thanks and gratitude go out to our community of support, for the love, the prayers, and the meals! It continues to mean so much to us and to help us so much along this journey.

Love to you all,
Cynthia