Saturday, May 31, 2008

Great CT Scan results!

Hi everyone.

I just had a very brief phone conversation with Henry. As you know from previous posts, Harry is back at Children's Hospital for his 5th round of chemo (this is one of the 5 day sessions), and yesterday they received the results of the CT scan done on Tuesday.

The results:
1. the tumor on the liver has shrunk again since the last CT scan
2. the lungs have only one spot left (Henry said that at first there were around 20 lesions), and that spot in the lungs may in fact be scar tissue
3. the lymph nodes are CLEAR - they're CLEAR!
4. the doctors will begin to discuss surgical options with Cynthia and Henry early next week.

Wow, this is great, great news, and we'll be sure to provide more details as we learn of them.

Tuesday, May 27, 2008

Sunshine, BBQs and just hanging out

BBQ dinner at our place
(May 18)


Last Sunday, Hendrick was a guest of honour at a BBQ at our place. Joining in were his Mummy and Daddy, big sister Lydia, hosts Auntie Kathleen and Uncle Gareth, as well as his "step-cousins," Sara and Matt (Sara's in picture #3) and Simon and Judith (picture #8).

"I love my Mom"

"Hmmm, so many drawers, so little time."

Just hangin' on the boulevard ...



Family BBQ - let's get happy


Cheese!

Heading home for bedtime ...


"Happy Hour"
Friday afternoon on Ruby Street
(May 23)

At the end of a busy week, is there anything better than hanging out in the front yard, starting the weekend off in style? Speaking of style, check out Harry's new shoes!




I love having my belly rubbed!

"Lemme just push this one button here!"


Tired, but happy
(May 27)


Harry had a CT scan today. Though Cynthia told us that he was very upset as they prepped him for the procedure, you can see that he ended his day tired but happy. CT scan results are expected on Friday. Here's hoping for the best news possible.


"Hey mom, where's my PJ top?"



“Healing Harry” team for Canadian Cancer Society Relay for Life

Hello everyone,

I've just learned from Jodi Lee that the “Moms” group has formed a relay team called, “Healing Harry,” for the Canadian Cancer Society’s Relay for Life. The Relay for Life will be held June 6th and "the Moms" are inviting all of us to participate with them.

Please consider supporting Harry’s journey and the journey of everyone with cancer by:

i) joining the Moms' team! You can register at the following URL. (Note: you can't see the whole address on the blog, but if you double-click the address, and copy the URL, you can paste it in a URL address line.)

http://convio.cancer.ca/site/TR/RelayForLife/RFL_MB_Winnipeg_?team_id=47300&pg=team&fr_id=2222&fl=en_CA&et=DklfABe4f7I9IwibeoucMQ..&s_tafId=7068
(password is "hendrik")

OR

ii) signing up to make a pledge! You can pledge the Moms' team at:

http://convio.cancer.ca/site/TR/RelayForLife/RFL_MB_Winnipeg_?px=1459335&pg=personal&fr_id=2222&fl=en_CA&et=G9ws6uAICA8v9ofsNoFTkQ..&s_tafId=7067

Go Moms Go!

Sunday, May 25, 2008

Picture alert!

Dear friends,

Even if you've read the previous post, please have another look: we've finally had a chance to intersperse some recent, relevant pictures that Cynthia sent last week. Enjoy!

Thursday, May 22, 2008

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 ...

************

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

Thursday, May 15, 2008

Soccer fever


When we dropped by the playing field behind Laura Secord School (which lies directly between our place and the Neudoerffer-Venema residence on Ruby Street) after supper today (Thursday), we discovered that Lydia doesn't always like having her picture taken. Maybe just not in the midst of a high-pressure soccer game. Here's a bit of record of the rest of our visit:

"Mom, I need my jacket. I'm cold!"


Snacks at half-time


Meanwhile, back at home, Harry was happy to visit. Four days after his fourth round of chemo ended, he's doing great. Those scratches on his left cheek are the result of a small feeding tube mishap from yesterday, but they must look worse than they feel ...



Because the minute he catches sight of Uncle Gargoyle, all he wants to do is laugh and bounce!


Monday, May 12, 2008

1000 origami cranes

Dear friends,

We're happy to report that Harry finished round four of chemo yesterday afternoon (Mothers' Day) and was discharged from the hospital in fine physical shape and even better spirits. We will post updated pictures soon. Almost a month ago, Cynthia prepared the message that follows, which describes one of the countless acts of love and support that have characterized Harry's journey to healing ...

Thursday, April 17th, 2008

One of the blessings we have been given as we walk with Harry on this journey of healing and laughter is the outpouring of kindness, love and support in so many different ways from family and friends - by people we know well, by people we have only met a few times and by complete strangers. It really gives us hope and re-affirms our faith in the goodness and joy that is in the world if only we give it a chance.

Miyuki and Kirk Cumming, along with their wee daughter Lisa are three such wonderful people. We have only met Miyuki and Kirk a few times. We are connected through Fort Rouge Co-Op Day Nursery, Lydia’s old daycare located in Osborne Village on Stradbrook Street in St. Luke’s Anglican church.

Lydia attended FRCDN from November 2005 until September 2007, when she started Nursery school. This is a wonderful daycare, with a fantastic and dedicated staff and an amazing director. I (Cynthia) remained on the parent Board of Directors as a community representative even after Lydia went on to Nursery school. I met Kirk and Miyuki via the parent board.

Miyuki is from Japan and when she learned of Harry’s illness she offered to organize a ‘1000 Origami Paper Crane’ healing project for Harry. The other parents on the board were incredibly responsive and supportive and this wonderful group of friends started work on folding 1000 paper cranes for Harry.

Miyuki described the 1000 Paper Crane project in this way in an email to me:

“I know Harry, you, Henry, and Lydia are going through a very difficult time right now, and I wanted to do something to help you all get through this difficult time. I am from Japan, and in Japan, the crane is a symbol of longevity. We believe that making a thousand origami paper cranes will recover anyone's health. We actually made more than 1,000 cranes for Kirk's (my husband's) dad when he was in the hospital after a very serious car accident last April. He was in a coma for 3-4 months and he went through a lot of ups and downs. However, he managed to recover consciousness, and eventually, he was able to breathe and eat by himself. He moved out of the hospital last week to a nursing home.
I also believe that people's prayers and love support each other, and I would like you to know that we are all thinking of Harry, you, and all of your family. I would be honoured if you would include our origami project in Harry's journey of healing with others.
We hope we can deliver the cranes that a lot of people are making right now to Harry's room of healing soon.”

Miwa and Yuki helped out

This amazing group of friends at FRCDN started working on the 1000 origami paper crane project in mid-March (around March 22). Parents and children at the daycare all took part. As well, several of the parents are teachers and they took origami paper to their classrooms and got their students involved in folding paper cranes for Harry. Many of the children wrote messages of healing and hope for Harry on the paper before they folded the cranes.

Lyla and Miyuki deliver cranes to Cynthia and Lydia

This wonderful group managed to fold over 1200 paper cranes in less than two weeks. Lyla (FRCDN Director) and Miyuki delivered the astonishingly beautiful chain of cranes to our house on Wednesday April 2nd.

You can view photos of the crane project coming together and the final delivery at Kirk and Miyuki’s Flickr photo site at:

http://www.flickr.com/photos/kirkandmiyuki/sets/72157604361539798/

Henry and I are so honoured and deeply touched by this gesture of kindness and the love for Harry that it represents. We truly believe that these acts of love are healing Harry. And, in the way they connect us, are also helping to heal each other too.

The cranes hang in the centre of our house in Harry and Lydia’s playroom, where we can enjoy their beauty and the healing love they represent each day. We will take the cranes to the hospital this Friday to hang in Harry’s room while he undergoes his next round of chemotherapy.


We want everyone who was involved in this project to know just how much it means to us and to know that you have really touched us by your act of kindness and love! Thank you so very, very much. We especially extend our gratitude to Miyuki, Kirk and Lisa for spearheading this project. Thank you!!!

Peace, love and blessings,
Cynthia

Thursday, May 8, 2008

Update from Cynthia: round four of chemo is about to start

Dear friends,

We have had a good week at home. Harry is doing so well. He is super active, and is now really pulling up to standing all over the house and can walk on his own pushing a little cart.

We went to the Cancer Clinic on Tuesday and his counts were good. So we are on track to start round 4 of chemo on Friday. We will go to clinic in the morning and they will draw a blood sample to check his counts and then we'll be admitted from there. His hemoglobin was low on Tuesday - 76 - so he might need a red blood cell top-up transfusion before we start chemo.

This is the VAC round - so we should only be in the hospital for 4 days. The chemo itself lasts for 48 hours - the Vincristine is just a one shot dose on Friday night. The cyclophosphamide will drip into Harry's central line IV over just a few hours on Friday, while the Adriamycin (or Doxorubicin) will slowly drip in over 48 hours. So the chemo itself should be done by Sunday afternoon and we should be able to come home on Monday sometime.

We ask for your prayers for an uneventful chemotherapy round, that the chemo continues to work its magic and shrink away Harry's tumours and that he gets through the recovery phase without a fever/need for a return hospital visit!

After this round we will have another CT scan to see how much smaller the tumours are now. We pray that his lungs and lymph nodes are completely clear and the liver tumour is small enough to schedule his surgery.

Blessings and with love,
Cynthia

Thursday, May 1, 2008

Happy Birthday Mummy Cynthia!

Dear friends,

Having successfully convinced his medical team that he was i) not running a fever and ii) not fighting an infection, Harry was discharged from the hospital this afternoon (Thursday, 1st May) in time for a special birthday supper that Toni had made for Mummy Cynthia. We brought over cake and candles a little later and made the following short record of Cynthia's big day ...

"Happy birthday dear Cynthia, happy birthday to you!"


"Can I help blow out the candles Mummy?"

"I wanna take a picture, Uncle Gargoyle!"