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