Visiting at the Cancer Care Clinic

Dear friends,

All the news from here is good: Harry's been fever-free for almost 48 hours by now. His medical folks would like to keep monitoring him, though, so he will spend tonight in the hospital (with his Daddy) and come home tomorrow. Cynthia sent the message that follows a few weeks ago, but it still gives you a bit of look into life at the Children's Cancer Clinic ...

Hey, and for everyone who didn't know, tomorrow (Thursday, May 1st) is Cynthia's birthday!

Friday April 18th 2008

When we are at home, Harry goes to the Cancer Care Manitoba Children’s clinic once or twice a week (Tuesdays and Fridays) for a check up. A check-up involves a blood test to check his counts, weight and measurement to see how he is growing (making sure he is not losing weight), and a visit with his oncologist, Dr. Stoffman. If needed, he can have a blood transfusion at the clinic, and the nurses can change his central line dressing and clean and flush his central line lumens.

Our first visit to the clinic was on Harry’s first birthday, Friday April 4th. We ended up having to stay in the clinic pretty much all day, from 9:30 am till 6:00 pm, as Harry needed a transfusion that day. That being said, Cancer Care Manitoba is housed in a beautiful new building on the HSC (Health Sciences Centre) hospital campus and the Children’s clinic is beautiful, not at all like a hospital, and a wonderful place to stay, if you have to be at a Cancer Care clinic!

They have a great ‘play pit’ in the centre and Harry loved peeking in each of the cupboards to discover what was behind the door. The edge of the pit is just the right height for him to practice standing up too! It was also his nurse Wanda’s birthday on the 4th and she shared some chocolate cake with Harry. Here are some pictures of him playing in the clinic on his birthday, including his ‘cake face’ – his first taste of chocolate!


The next week we had a shorter visit on the 8th and again on the 11th. At our visit on the 11th, Dr. Stoffman felt Harry was doing well enough that we didn’t even need to come back on the 15th – we could wait till the 18th for his pre-admission visit.

Siblings are welcome at the clinic, and encouraged to come to share in their sibling’s experience. A child life specialist runs the clinic, along with several volunteers. So Lydia came along, with Oma, on Friday the 11th, so she could see what a visit to clinic was all about. As well, they have a mock up CT scan with puppets for the children to play with. As Harry was going for his CT scan the next week, this allowed Lydia to see what a CT scanner looked like and to ‘play out’ what a CT scan was all about. Dawn (the child life specialist) is wonderful and helped Lydia through this play.


Lydia had a chance to play with a puppet that has a central line with two lumens just like Harry, give the puppet a CT scan and also hook up an IV to the central line to pretend to give the puppet chemotherapy – all just like Harry. She also met another girl her age, Jordan, whose little sister is being treated at the clinic as well.

This is one of the many ways we are so supported by the team at HSC / Children’s Hospital. Again, we feel so very lucky to live in a province / country that has such a wonderful medical system that all of this is available to us at no charge, just part of our one-tier public medical system!

Love,
Cynthia

Harry on Monday evening, holding his own

We knew this would be a tough round of chemo, so it wasn't surprising to find that Harry didn't have quite his usual amount of energy yesterday (Monday). That didn't stop him, though, from various antics with phones ("Is this the real one Mom?") after which he pulled himself up to standing behind his IV pole and walked a few steps! Unfortunately, we weren't fast enough to catch this "first" on film ...

Back to the hospital with a bit of a fever

Dear friends,

A quick update to let you know that Harry went back into the hospital overnight with a bit of a fever. As I write, he's fine: his temperature has gone back down to 37 degrees and he's getting a blood transfusion, platelets, and antibiotics. He was already on schedule to be at clinic today, and Cynthia had predicted yesterday that he would probably need a transfusion, given the toll the last chemo round had taken on his over-all energy.

They'll probably keep Harry in overnight for monitoring. Given that he's already regained stability, though, he'll almost certainly be able to come home again tomorrow (Wednesday).

The idea of a midnight run to emergency is always at least a little disconcerting, but, as Henry said when he phoned, it's almost an expected occurrence at some point in the days after chemo.

We'll post an update later today with pictures from yesterday so that you can see just how sturdy and cheery the little guy continues to be. Thank you all for your continued thoughts and prayers and for your ongoing care ...

Post-chemo update

Dear friends,

Round three of Harry's chemotherapy has thankfully passed uneventfully and we are now back at home.

We were admitted to the hospital last Friday afternoon, after Harry's clinic visit. We arrived at the clinic both very nervous to find out the results of Harry's CT scan and excited at the same time. Given how good he looks and how strong he is we felt positive that the CT scan would be good news; the question was just how good.

One of the nurses gave us a sneak preview of the scan results when we were going to have Harry weighed. She told us with a twinkle in her eye and a smile, "There is a copy of the CT scan report for you to have framed in the examination room." We both nearly wept with joy. This only increased our excitement to hear the actual results.

As Kathleen has previously reported, the CT scan results were excellent! In the words of Harry's oncologist, "better than his best possible expectations." As my friend Jodi reminded me, we were originally told that the goal for the first two rounds of chemotherapy was to simply stop the tumours from growing. Harry has far exceeded that expectation.

In summary, "the chemotherapy is working very well!" The tumours in the lungs and lymph nodes are all fewer in number and smaller in size. No tumours were seen on the kidneys or bladder. The liver tumours are smaller as well. Quoting from the CT scan report:

"There has been a definite reduction in the number and size of pulmonary nodules when compared to the previous examination ... pulmonary nodules are fewer in number and smaller in size." And, "There has been a reduction in size of the liver and overall reduction in size of tumour mass within the liver parenchyma when compared with the previous examination. ... There has been a definite decrease in the overall tumour volume within the liver ... There has been a definitive response to the patient's chemotherapy."

Harry's oncologist is hopeful that, if the tumours keep responding well to the chemotherapy, we will be able to consider surgery to remove the remaining tumour mass after 4 to 6 (more likely 6) complete rounds of chemotherapy (i.e. 1 to 3 more rounds till we hope to be able to do surgery).

Being optimistic, we prefer to say and pray that "the tumours keep shrinking away quickly, the chemotherapy keeps working its magic, and Harry is ready for surgery after four rounds of chemotherapy." Hey, Harry has already far exceeded their expectations; we see no reason why he can't just keep on exceeding their expectations!

Before the doctors will consider surgery, the lungs and lymph nodes need to be clear of tumours and the liver tumours need to be shrunk sufficiently to be able to operate. The best case for surgery will be that the remaining tumours are 'resectable,' meaning they can remove the tumour mass and leave Harry with enough of his own healthy liver for it to regenerate on its own. The other scenario is that they will have to completely remove his liver and he will need a transplant. We will cross that bridge when we come to it. Right now, we are focusing all our energy on praying that the chemotherapy keeps working so well and keeps shrinking the tumours.

We were admitted back onto the CK5 ward mid-afternoon and Harry began his chemotherapy at 7:00 pm (he needed six hours of IV fluids before they could start). We were lucky, we got a double room to ourselves. We quickly settled in by decorating "Harry's (new) Room of Healing and Laughter." I (Cynthia) spent Friday night at the hospital with Harry. It was a bit of an unsettled night. His chemo ran until midnight and I think because of the transition back to the hospital he didn't sleep as well as he had been at home.

Henry and Lydia came up for a visit late Saturday afternoon. Harry, as if just to impress the nurses and prove chemo wasn't going to stop him, walked around the ward pushing a wee cart. This is the furthest he has ever walked! Henry spent Saturday night at the hospital.

Harry had a bit of nausea from Saturday to Monday, likely a reaction to the carboplatin drug, which is the most potent of the three drugs he received this round. But other than that he seemed unfazed by the chemotherapy and he was his usual cheery, happy and bouncy self! All of the nurses commented on how great he now looks and everyone peeked into the room just to see him smile and play a round of peek-a-boo.

The five days of chemotherapy passed quickly and we were discharged on Wednesday at noon, 18 hours after his last dose ended. Harry needs 18 hours of IV fluid after the last dose to flush his system of the drugs. So we were back home by late afternoon on Wednesday.

Thank you to our wonderful community of support for the nourishing meals that sustain us through our hospital visits and in between, and a special thanks to Toni for her amazing homemade granola bars (which got us through day one of chemo) (yeah, they only lasted one day again!) and to Jen Pineau for her delicious 'brown bag of baked goodies,' which really made our hospital stay bearable this time around!

Phew. Round three is done. Now we head to the clinic tomorrow (Friday) to see how his blood counts are doing.

Overall, Harry is just amazing. His energy is incredible. We keep shaking our heads and asking each other: "He just went through five days of chemo right?" He is chasing his sister around the house and dancing to rave music with his Daddy already.

This morning another first: Harry had his first bowl of infant oatmeal in 2 months. That is one of our next goals, to try to get him back to eating solid food.

The road back to full health for Harry is still very long. I feel overjoyed to have come so far in such a short time. Yet at the same time, I had to pull myself back from feeling overwhelmed with fear at how far we still have to go. A little part of me felt let down by the CT scan results; I have to admit a wee part of me had hoped they would tell us, "Wow, look at that, the cancer is all gone." I know I just have to be patient to wait for our miracle to unfold.

Please know just how much all of your love and support continues to sustain us through this journey!

Peace and blessings,

Cynthia

Last day of chemo for now

Dear friends,

I was lucky enough to spend an hour and a half at the hospital today with Cynthia and Harry and so had a first-hand look at just how well our little gaffer is continuing to be. Despite having started his final chemo bout an hour before I arrived, Harry was full of beans, wanting to bounce at every opportunity, exceedingly interested in both Mummy's lunch and mine, enjoying salmon for the first time in his life, and laughing uproariously at his exploits with, variously, the phone, Mummy's hand cream, my water bottle, and the night light.

As Cynthia's friend Jodi reminded us, the original intent of these first rounds of chemo had been to slow down the tumours' growth. The fact that last week's CT scan shows fewer tumours and smaller tumours means that Harry's treatment plan is working far more effectively even than it was originally intended to do.

If we weren't already over the moon about that, spending time with Harry would certainly send us there. At this point, his doctors expect to be able to discharge him by 11 am tomorrow (Wednesday). One more bit of news to celebrate this evening. Be well everyone,

CT scan results and chemo, round 3

Dear friends,

Cynthia and Henry got Harry's CT scan results on Friday afternoon and the news was better than the best we dared imagine. In the words of Harry's oncologist, the results "exceeded my most optimistic hopes." In every case (lungs, liver, lymph nodes), the tumours are smaller and they're fewer in number. Clearly, the first two rounds of chemo have done their work. The doctors are now saying that somewhere between two and four more rounds of chemo could eliminate all the tumours except those in the liver and reduce the liver tumours to a size that can be operated.

We have a great deal to celebrate and for which we're deeply thankful.

Harry's third round of chemo began on Friday at 6 pm. This round involves the same cocktail of drugs that he received the first time and will end on Tuesday; Harry will be in the hospital until Wednesday, though, so that his medical team can monitor the way his body flushes the chemicals.

The following pictures were taken today (Sunday, third day of chemo) over the course of an hour and a half, during which Harry experienced everything from exhilaration at Mummy's arrival to acute (but relatively short-lived) nausea.

Mummy and Lydia arrive to spell off Daddy, who's spent the night and the day

Sometimes chemo just makes you sick ...

Resting with Mummy


Recovered enough to want kisses with Lydia

Getting his moxie back ...

Please continue to keep us in your thoughts and prayers. The news is absolutely wonderful, but the road is still very long.

Message from Henry

Dear all!

As superb a job as Cynthia has done at keeping everyone fully apprised of how Harry and we are doing on this journey, I thought I'd add a few thoughts from a Dad's perspective. As Cynthia recounted, the story starts with the terror of being sent to Children's emergency by Harry's pediatrician on Feb 22, the anxiety of a weekend of tests, and then the devastation of a cancer diagnosis on Feb 24.

One thing we've known for a while is that Harry absolutely loves music, rhythm, anything with a beat -- I sometimes think a heartbeat is enough to get him grooving. When he's feeling well, which he has been the past week or so, just holding him in my arms is enough to get him bopping up and down. If there's music on, look out, he's lunging for the nearest object that he can use for percussion.

Back to that weekend in February: Harry had not been feeling well (yes, a bit of an understatement) for weeks and had become worryingly listless. When I flipped the TV in the hospital room to the weather channel, though, just to hear some music and caught the U2 song "Walk On," Harry flashed his trademark 1000-watt smile for the first time in days and started grooving along. In that moment Cynthia and I both saw that his essence, the deep joy at the centre of his being, was unchanged and that he would show us the way to walk on.

The first few days were very tough. I remember feeling wracked with guilt that we had done something wrong and then thinking I'd never feel joy or happiness or experience laughter again. Well I was wrong on all counts: in the first week I felt all those emotions again (and thanks to the takeout shawarmas that Uncle Gareth brought to the post-op waiting room on the day of Harry's biopsy surgery, I got my appetite back too!).

As difficult a journey as this is, it's exhilarating too because we're feeling the healing power of community. We're in the throes of a miracle. One of my professional interests is in community-based resource management, and so I've researched and written about community-based approaches, but I've never experienced anything like this. When I'm too tired to pray, it's reassuring to know the rest of the world is picking up the slack. I don't know where we'd be without this tremendous outpouring of support from family and friends and people we don't even know: I pray with profound gratitude for the web of love that's holding us together and healing Harry.

The list of spiritual and material gifts shared with us is almost too long to list, and I'm sure I've forgotten something, but we're immeasurably grateful for the prayer shawls that have coddled Harry and us; all the inspirational cards and messages; the prayer lists around the world that include Harry; Jodi's organizational talents; Jacki and Erika's healing circles; Mariah's reiki, Izzy's reiki, and Jennifer's energy healing; Auntie Cecelia and Oma Norma, who put their lives on hold to fly to Winnipeg to spend weeks with us figuring out next steps; the seemingly infinite variety of casseroles and salads that keep showing up on our doorstep; the freezer to put them in; play-dates and babysitters for Lydia; the hospital parking pass; random acts of generosity; my understanding colleagues at IISD; our wonderful medicare system and its dedicated and compassionate staff; Kathleen and Gareth for managing this marvelous blog that's been so instrumental to Harry's healing.

I'm also incredibly grateful for Lydia and Cynthia, who seem to know exactly what big sisters and moms are supposed to do at all times, and I'm especially grateful for Harry. It's very easy to stay this positive with our little guy leading the way, showing us how to walk on.

With love to you all,

Henry

CT scan update and settling-in news from Cynthia

Cynthia just phoned to say that today's CT scan went well (except for a very long wait); even as he was coming out of sedation, Harry was his usual exuberant self, charming all the medical personnel who got to see him. Cynthia and Henry should have the scan results by Friday, which is also the day that Harry goes back into the hospital for his third round of chemo. Thank you for your continued prayers and meditations; they buoy us up and work miracles. What follows is Cynthia's update on what "life at home" has been like since Harry was able to leave the hospital on March 31st ...

Settling in at Home

Friday 11 April 2008

We have now been home for almost two weeks. Wow, it seems incredible to even write that. The past two weeks have flown by, but slowly we are settling into a ‘new normal’ at home. Last Saturday was the first day that felt, for both Henry and me, like something remotely resembling ‘normal.’

Harry is doing amazingly well. At the Cancer Care clinic today, Dr. Israels, the head of pediatric oncology, was amazed to see him looking so good and doing so well. She hasn’t seen him for about 4 weeks. When she went looking for him on the ward she was surprised to find that he was already discharged.

Speaking of which, we were discharged early from the hospital -- on Monday March 31st. We had been expecting to come home on the Wednesday or Thursday of that week, at the earliest. So I (Cynthia) was quite shocked when the oncologist on-call that week announced around noon on the Monday that Harry was being discharged that day.

I made a panicked phone call to Henry, telling him he had to leave work right away to help me pack up the room so we could head home! Most fortunately, our beautiful friend Mariah had arranged to spend a few hours with us on that Monday evening, originally to give me a break to eat some dinner. Instead she was invaluable in helping us pack up all of the wonderful decorations and additions we had made to Harry’s Room of Healing and Laughter.

Most of Monday the 31st was spent making sure we knew enough to care for Harry at home. We were instructed on how to draw his meds (fill the syringes) – we had been giving him his meds in the hospital for a few days by that point. They also tested on us on our central line dressing change – did one both on the dummy and on Harry -- and on our emergency line care. Originally, they wanted to send us home able to flush the central line if need be and also insert a new NG feeding tube if it came out. We didn’t feel comfortable doing either. Fortunately, the doctor agreed that if a cap comes off his central line, we just have to clean it and recap it and come to emergency to have it inspected and flushed. We’re okay with injecting things into his feeding tube but not nearly so ready to inject saline right into his major heart blood vessel! Ditto on the feeding tube – it takes two nurses to hold him down to insert the feeding tube and there is a risk of it going into his lungs instead of into his tummy when it is inserted. So we opted to just go to emergency to have it re-inserted if it comes out.

Good thing we live only 10 minutes from the hospital – I don’t know how families cope if they are across the city or worse, live in Northern Ontario or western Manitoba.

Feeling both very nervous and very exhilarated we left the hospital!

We arrived home around 19:00 – the look on Harry’s face when he realized he was home was absolutely priceless! He obviously recognized the house from the outside and was just thrilled to see all of his toys on the inside. When we put him in his crib, he pulled up to standing right away, as if just to say, “See, I can!"

He slept well that first night and almost immediately settled back into his 4-hour-a-day nap time routine (2 hours in the am and 2 in the pm).

The biggest challenge with being home has been getting used to his feeding schedule. He has to be attached to the feeding pump for 7 hours a day. When he is attached, we have to hold him or, at least if he is crawling around (which he wants to do), follow him around dragging the IV pole. So it is very difficult to do anything around the house! That being said, it is amazing how quickly children adapt to new situations. Harry seems to have figured out he needs to move the IV pole and will push the pole around in front of him if he wants to crawl around now (not always but sometimes). Our new game is also ‘pole riding’ – where he sits on the base of the pole and holds on to the stem and I push him around the house! Lydia also likes to ride on the pole like a skateboard around the house.

We had two major adventures the first few days being home. By Wednesday I realized that the feeding pump Harry had been using in the hospital since the previous Thursday was under-dosing him by 50%. We always wondered why there was feed left over in the hospital and just figured the nurses were keeping it topped up. But we found by the end of the first day, when we should have been done all of his formula, that we still had nearly half the jug left over. The second day, I tracked each feed (volume in / volume left over) very carefully and found by the last dose of the day that indeed the pump was off by a good 50%. This meant that Harry was NOT getting 105 ml an hour as we had thought but more like 55 ml/hr. We tried to bump up his feeding rate Thursday morning but only succeeded in pissing him off (making him feel sick) so that he promptly pulled out his feeding tube. Rats.

So, preparing to go and sit in emergency for hours, we called the oncologist on-call. Luckily, after a few hours of asking around, we discovered, between the home-care nurses and the doctor, that the nurses on CH3 – the paediatric day unit -- were willing to insert the NG tube for me. So Harry and I headed to the hospital to pick up a new feeding pump and get his NG tube re-inserted. Since then the new pump has been working much better. We started him on 80 ml/hr and have been able to work him up to 100 ml/hr.

Interestingly, when we asked why the home care nurse, who had to come anyway to give Harry his GCSF shot, couldn’t just re-insert the feeding tube, they told us, “Oh no, they are not comfortable doing that on a child.” Okay, we said, so let’s get this straight, a NURSE isn’t comfortable inserting the tube into an infant, but they wanted the parents, with no medical training whatsoever, to do it at home? Yeah, right!!!

Friday April 4th dawned clear and cool here in Winnipeg. But the joy in our household made the day perfectly sunny and warm. Harry’s FIRST BIRTHDAY! The most wonderful, wonderful gift ever was having him home for his birthday. We are SO grateful for that gift.

You will have seen the beautiful pictures from his small party we had on Sunday April 6th. Harry’s energy level is amazing and his spirit is so joyful. He is truly an inspiration to us, our wee Prince Harry.

And so, our days are taking on a semblance of routine. Lots of time is spent alternating between holding Harry and chasing Harry. He is crawling around like crazy! He is also very interested in toys now, especially his trains and cars, and at just about the age where Lydia started getting into ‘tea parties’ – so much for nurture vs. nature! He is just like his dad as a boy (his Auntie Kathleen is having flashbacks to 41 years ago): he has started grunting and pointing at everything he wants and balls up his fists and scrunches up his face if we don’t figure out what he wants quickly enough for his liking!

And he laughs and laughs and laughs, his hearty, joyful laugh. It melts our hearts.

Lydia loves having him at home. She too is a superstar and has done so well with all of the changes in her life. She is getting used to the idea of having to share toys with her brother now that he is actually interested in playing and not just chewing on random toys.

We have made it to Kindermusik last Wednesday, which Harry really seemed to enjoy, and we made it to church this past Sunday (April 13). We have also made it out to the park to play a few times. He laughs on the swings and loves the slide. It is just such a gift to be able to take Harry to all of these places and see him so joyful and happy once again!

We could not have made it this far without all of your love and support. We really mean that. It is an incredible feeling to feel so loved and supported by so many people near and far. It is truly a blessing from this experience. So if you wonder if your prayers and support are making a difference, the answer is an emphatic YES, YES, YES!

Have a wonderful Monday!

Love,
Cynthia


The Week to Come

Sunday, April 12 2008

This week Harry has his CT scan on Tuesday at 14:00. This is the first chance we will have to see how well the chemotherapy is working. Although, we can tell just by looking at him (and seeing his energy-level!) that the tumours in his liver have shrunk. Our prayers for this CT scan are that it will show that his lungs, kidneys, and bladder are all cancer-free and that we are making very good progress on shrinking the liver tumours.

We ask for your very intentional prayers that his tumours are shrinking and that his lungs, bladder and kidneys are all tumour free.

We will return to the Cancer Care clinic on Friday for another round of blood tests and central-line dressing change. Then we will be admitted back to CK5 (hopefully our sunny CK535) on Friday afternoon to start Harry’s third round of chemotherapy. We are back to the ICE drug cocktail (what he had first round). So we will be in the hospital for a minimum of 6 days – five days for the actual chemotherapy drugs and then an extra day to flush his system with fluids. These drugs are more likely to cause nausea, so we’ll be discharged after day six, depending on how he is doing with side-effects.

Then, we’ll be back home, with daily visits from the home care nurse for his GCSF shot (to help encourage bone marrow growth), and twice weekly visits to the Cancer Care clinic. Our clinic visits can take anywhere from 2 to 8 hours. We’re there for a full day when he needs a blood transfusion, which he seems to need at least once per chemo round.

So this week at home will hopefully be an uneventful and ‘normal’ week, simply filled with joy in watching Harry thrive, play with, and annoy, his big sister Lydia.

Walk On (Our Theme Song)

A Memory from Sunday February 24th 2008

I have written earlier that we sincerely hope that Sunday, February 24th 2008 will go down on record as the worst day of our lives. That was our third day in hospital and the day that Harry had his first CT scan, which revealed his cancer. We were given the news shortly after noon.

Harry had been feeling pretty ill since we had arrived at the hospital and we hadn’t seen him smile for several days. Harry’s nickname has always been ‘Happy Harry’ – so it was quite heartbreaking to not see him smile. Among the rush of emotions on that first day of his diagnosis, one feeling was, ‘would we ever see little Happy Harry smile again?’

We got our answer in what felt like a very prophetic way later in the day. It was around dinnertime, we were still on the fourth floor of Children’s Hospital, waiting for a room to come available on CK5. Harry has always loved music and Henry had turned on good old Channel 48 (the Environment Canada weather channel), because they play a range of pop music. I suppose it is a sign of our age that we find the musical selection on the weather channel ‘not too bad’ these days.

Anyway, the first song that came on was U2’s “Walk On” from the “All that You Can’t Leave Behind” album. If ever I have felt that the Universe sends us signs, this was one of those times.

Henry held Harry, and Harry smiled and laughed for the first time that day, as the three of us danced, laughed and cried to this song in his room.

In that moment, I felt that everything was going to be okay. Harry’s reassuring smile seemed to say, ‘we can do this’. Somehow we are going to ‘Walk On’ and make it through this journey. The words of the song just seemed to speak directly to the journey Harry was now facing: to stay strong and to ‘walk on.’

Here are the words to the song, our theme song to Harry’s Journey of Healing:

Walk On (By U2)

And love is not the easy thing
The only baggage you can bring …
And love is not the easy thing …
The only baggage you can bring
Is all that you can’t leave behind

And if the darkness is to keep us apart
And if the daylight feels like it’s a long way off
And if your glass heart should crack
And for a second you turn back
Oh, no be strong

Walk on, walk on
What you got they can’t steal it
No they can’t even feel it
Walk on, walk on …
Stay safe tonight

You’re packing a suitcase for a place none of us has been
A place that has to be believed to be seen
You could have flown away
A singing bird in an open cage
Who will only fly, only fly for freedom

Walk on, walk on
What you’ve got they can’t deny it
Can’t sell it, can’t buy it
Walk on, walk on
Stay safe tonight

And I know it aches
And your heart it breaks
And you can only take so much
Walk on, walk on

Home ... hard to know what it is if you’ve never had one
Home … can’t say where it is but I know I’m going home
That’s where the hurt is

I know it aches
How your heart it breaks
And you can only take so much
Walk on, walk on

Leave it behind
You’ve got to leave it behind
All that you fashion
All that you make
All that you build
All that you break
All that you measure
All that you steal
All this you can leave behind
All that you reason
All that you sense
All that you speak
All you dress up
All that you scheme…

Walk on, my dear Harry, walk on.

Love,
Mummy Cynthia

CT scan update

Dear friends and family,

We went to Children's Hospital this afternoon (Tuesday 15 April) expecting to have a CT scan to give us an update as to how Harry's treatment is progressing. Unfortunately, the prep staff at Children's CT didn't think about the fact that Harry is now so active that he would need to be sedated for the CT scan.

As our doctor said, "They knew he had a previous scan and they remembered he had been so still and cooperative. They forgot about the fact that he was quite sick then and he is much better now."

The radiologist was impressed to see Harry. He commented on how great he looks and how active he is now, which is all wonderful -- except for the fact that he needs to lie still for the scan!

So, our doctor was able to pull some strings and line up an anaesthesiologist for tomorrow morning early. Harry and I need to be at the hospital at 7:30 so he can be prepped for his scan, which will happen at 9:00 am.

We ask for your prayers as we get ready for this CT scan. We know just from looking at Harry and seeing his smaller tummy and watching his energy level that the tumours are shrinking, but the scan will tell us how much. We ask for your intentional prayers that his liver tumours are shrinking and that his lungs, bladder, and kidneys are all clear (which would be the best-case scenario).

Thank you all so much. Love and blessings,

Cynthia

Thank you for everything, Oma!

We dropped in on Ruby Street with our camera last Thursday (10 April) to make sure that we got pictures of "Harry at home" before Oma Neudoerffer had to go back to Guelph the next day. These pictures are for all of us but they're sent with special love for Auntie Sarah and Auntie Cecelia and their families in Paris and Warsaw ...

Oma, "Lovie," and Harry, ready for action

Princess Lydia preparing to dance ...

Dr. Mummy at work, with Oma assisting

"Thank goodness that's over!"

"Want to see my celebration dance, Auntie KK?"

"I promise I won't taste it, Oma!"

"Let's all get on the counter!"

Harry's on the go, with or without his I.V. feeding (which provides essential nutrition several times a day)

The welcome beginning of spring in Winnipeg

Just like his Daddy. (Auntie Kathleen has vivid memories of toddler Henry pointing imperiously at whatever it was he wanted ... )

"If I could draw your attention to this cookie, Uncle Gareth ... "

"Hey, I'd recognize that camera anywhere."

Oma Neudoerffer and Pake and Beppe Venema

The Neudoerffer-Venema family,
briefly in one place during happy, after-supper, bedlam

Sorry we took so long to get the pictures up here: we got a bit slowed down at our own home by one of those routine hospital procedures that requires a day of preparation and half a day of recovery but only 15 minutes in a room with a doctor!

Harry's first birthday!

You probably know that Harry turned *one* this past Friday, April 4th. The following pictures were taken yesterday (Sunday) afternoon at a small family gathering at Ruby Street to celebrate Harry's big day and the fact that he and his Mummy and Daddy and Lydia all get to be home together!

Ready to party ...

Harry and his Pake Venema waiting for the action to start ...

Cynthia, Harry, and Auntie Sandy

"Say cheese!"

1000 beautiful origami cranes for healing,
made by friends at the Fort Rouge Co-op Day Nursery

Lydia and cousin Gwyneth find a quiet (??) corner to play ...

Harry's first reading lesson: "Happy Birthday!"

Even HRH Princess Lydia granted us the favour of an appearance ...

"... Happy Birthday dear Harry, Happy Birthday to you."

"Lyddie, can you help me blow out the candle?"

"Mmmmmm, chocolate cake and me with eight new teeth!"

Some hospital equipment came along home ...

All that partying wears a guy out.

"But if you're gonna play more music, I'm gonna clap along!"

Two down and laughing all the way

Hello again everyone; we're back from our little holiday as of late yesterday (Saturday). What follow here are the reports and photos that Cynthia compiled over the past week. At the time of the writing, she and Henry didn't yet know that Harry would already be able to come home on Monday 31 March, a full day earlier than they'd originally been told and in lots of time for this weekend's first-birthday celebrations (pictures of which will follow soon).

This, then, from Cynthia:

March 30, 2008

Harry completed his second round of chemotherapy this afternoon. This round consisted of three different drugs and was of a shorter duration – 48 hours as opposed to five days for the first round. The three drugs this time were Vincristine, Adriamycin (or Doxorubicin), and Cyclophosphamide. Vincristine was given as a one-time dose the very first day. The cyclophosphamide dripped into Harry’s central line IV over just a few hours the first day, while the Adriamycin (a lovely red-coloured drug) slowly dripped in over 48 hours.

So far, Harry has shown no adverse reaction to this cocktail of drugs. (That being said, the side-effects are often delayed a few days or weeks, so we’ll just have to keep praying that he experiences minimal side-effects). In, fact, whereas Harry basically slept through his first round of chemo, he has, quite literally, laughed his way through this second round. And I mean this in all sincerity – he has been smiling and laughing and dancing and playing all weekend. He is an amazing little boy and just a joy and wonder to behold.

Over this past week, as his white blood cell counts bounced back from the first round of chemo, our Happy Harry started to return too. By mid-week, Harry was laughing heartily and often. His two greatest delights are music of any sort (but especially playing percussion with his assortment of kindermusik shakers) and seeing his big sister Lydia. His whole face lights up when she walks in the room and greets him with her enthusiastic, “Hello Boinga! How’s my Har-sy-bear-sy?” and a big hug and kiss.

In honour of his wonderful mood, we have somewhat modified his room name. It is now called, “Harry’s Room of Healing and Laughter.” He is increasingly active – crawling around his crib, and more and more interested in playing with his toys. Really, our Happy Harry is back. He has spent the past four days cuddling alternatively in Mummy, Daddy, or Oma’s arms and, when he hasn’t been napping, he has been smiling and laughing. Somehow, he seems to just instinctively know that laughter is some of the best medicine around!


Our next goal is to go home. Things are looking very good on this front – the doctors are really pleased with how he has been responding to treatment so far and we are preparing to go home ahead of schedule either Tuesday or Wednesday this week. If all goes well, Harry will be home for his first birthday this Friday April 4th.

We could not have gotten as far as we have without the web of love and support you, our community of family and friends near and far, have woven around us. We are overwhelmingly grateful for your prayers, love, and support in so many different ways. It has been a truly incredible experience for us to be surrounded by such love and kindness. Thank you. Thank you. Thank you.

Peace, love, and affection,

Cynthia

Dr. Mummy Indeed

Looks like I might just get to put my newly-minted “Dr.” status to good use … Well, okay, not exactly (as Lydia likes to point out, “too bad you’re the wrong kind of Doctor, Mummy”), more like Nurse Mummy (and Nurse Daddy too!). Sigh. And don’t worry, although both Henry and I are finding, on one level, this glimpse into the world of medicine to be fascinating and giving us a new-found appreciation for the field, neither of us have any intention to return to school for yet another degree!

Earlier this week, several days before starting the second round of chemo, Harry’s oncologists surprised us with the news that they felt that Harry would be ready to go home after completing his second round of chemo. We had thought we would have to wait at least until the crash and recovery phase of this second round was over before we could even begin to think about going home.

Not so. Our superstar has been doing so well, we are hoping to be released on Tuesday or Wednesday this week (April 1st or 2nd).

Sometime last week (sorry, days here in the hospital are a blur, can’t tell you exactly which day it was) the doctors switched Harry from 24/7 tube feeding to a 1.5 hour on / 1.5 hour off schedule, and at the same time gradually increasing his feeding rate from 40 ml/hour up to 105 ml/hour. As soon as he was given the breaks his nausea and vomiting stopped. He has been steadily gaining weight on this feeding regime. He is up to 20 lbs even as his abdomen measurement continues to slowly decrease. He is starting to look more like a chubby toddler, what with his 8 teeth and all too!

With the increased volume he is also getting a 6-hour break at night. Last night Harry slept through the night from 8 pm to 7 am for the first time ever in his life! Whoo-hooo!

Also, now that the nausea seems to be gone, Harry is very interested in our food too – he wants to have a bite of whatever we are having, which is sometimes a challenge, as he doesn’t have enough teeth yet to eat all that we do. He especially demands to have whatever Lydia is eating! We’ve also discovered he can sip from a straw – so he has been having sips of juice and milkshakes which he likes as well.


We are being taught how to hook up his tube feeds, run the feeding pump, and give him his meds through his feeding tube as well. All in preparation for doing this at home next week. I think I have got the hang of starting and stopping the feeds and giving the meds. The only hard part is checking for the placement of the NG tube in his tummy. We do this by injecting about 4 ml of air into the tube while listening to Harry’s tummy with a stethoscope and listening for a ‘pop’ or rush of air to make sure the tube is in the right place. I can successfully hear the ‘pop’ about half of the time.

The other thing we have to learn is how to change the dressing on his central line and how to do emergency care on the lines (should a cap come off at home). We’ve watched the dressing being changed and have had a demonstration on a practice dummy. Next we have to practice on the dummy ourselves (a dummy, not Harry!).

Tomorrow (Monday) I’ll get a tour of the Cancer Care out-patient clinic, where Harry and I will come at least twice a week on Tuesday’s and Friday’s and I’ll be tested on the tube feeding and central-line care to make sure I’m okay to do all of this on my own at home.

Hmmm, I guess I’m going to have to break down and get a watch with an alarm and start paying attention to the time in order to keep Harry on his schedule. As well as being a little nervous, we are overjoyed at the prospect of getting to go home.

We ask for your prayers that the chemo keep working at shrinking Harry’s tumours, that his side-effects are minimal, that his healing continue and that he is able to come home!

Love,
Cynthia


Free at Last, Lord I’m Free At Last

What a joy. On Thursday for the first time in five weeks, Harry was ‘unhooked’ from all of his various machines and able to roam free in the hospital with Mummy! To celebrate we took a stroller ride down to that venerable Canadian Institution “Tim Hortons.” I don’t really like donuts all that much, but in honour of the occasion I had a chocolate dip and made sure Harry had a few bites too.


This short, but new-found freedom is a side-benefit of Harry being switched off 24/7 feeding. He has been off his IV since earlier in the week and thus there have been windows of time where, when the feeding pump is off and the tube disconnected, Harry is free to roam!

We’ve been to the playroom a few times and gone for a coffee and a stroll. Like all of his experiences in the hospital, Harry seemed to just take this one in stride too.

Love,
Cynthia



The Glass is Completely Full

I have always been a decided pessimist. For me the glass has always been half empty. Harry, it would seem, has been sent to teach me how to be an optimist. Those of you who know our daughter Lydia will understand when I write that I have long believed that Lydia was sent to me to teach me patience.

Lydia is a human dynamo, a bundle of energy and a classic ‘spirited’ child. She feels every emotion 100% and when she is happy and charming she is unbelievably sweet, but when she is angry or frustrated, watch out! Lydia has been challenging every one of my expectations and notions of what motherhood is all about since her birth. I like to say she is such a huge bundle of energy, it took an equivalent amount of work on my part to bring all that energy “over from the other side” and through me into this world. My mother and sisters tell me I have the patience of a saint with her and her moods. I don’t know about that, but I do know she has taught me a great deal in her four years of life so far about how to be respectful of her different way of doing things from my own and to be patient with her quirks.

I had been quite terrified to face childbirth a second time after my experience with Lydia’s birth. But Harry has been teaching me to be an optimist since his three-hour start-to-finish nearly-painless birth last April.

Sometime back in December or January, I was standing in the kitchen holding Harry one morning, cuddling him into my chest and nuzzling his hair. I was feeling particularly black and pessimistic all of December and January, which was strange, given that I had just successfully finished my doctoral dissertation and I should have been over-the-moon with joy. Anyhow, that day, I was feeling bleak. Then I had this feeling, “I don’t want my kids to grow up with a grumpy, pessimist for a mother. I want them to remember the mother of their childhood as joyful and happy and optimistic”.


I whispered a promise to Harry that day, that somehow, in some way, I didn’t know quite how, but I would become an optimist. For Harry and Lydia I would change. And I had this overwhelming feeling that Harry had been sent to teach me how to be an optimist.

This is why, almost from the start of this journey of healing with Harry, I have very intentionally chosen to face this challenge in our lives with pure optimism, joy, and love. I have felt very strongly from the start that part of my job in healing Harry is to truly learn how to be an optimist. When I am feeling down, I stand in the sunlight and feel the warmth and the light and let that fill me with hope.

Harry, of course, is making it easy so far. He is so strong and responding so well to the treatment. I truly believe in my heart that he is healing and that he is going to beat this. I ask you to be an optimist with me and to truly believe so too.

Love,
Cynthia