The Countdown is on!

So it's been kind of a hairy past few weeks...we spent Nov 28 - Dec 9 in hospital for assorted issues. First Daniel had pneumonia, so we were admitted, and as part of the admission protocol for kids with fever & cough, he was tested for H1N1, which came back positive. So we were in isolation for several days, after which he improved considerably and we were sent home.

He was home comfortably for one day, then got another fever, so we went back to Sick Kids, found out he had a viral infection with high fevers, so we were admitted again and stayed another few days on what seemed like every antibiotic under the sun. Pink ones, white ones, chalky ones, and ones that tasted, apparently, like "cat butt". Frankly, I shudder to think how he has sufficient data to make that comparison.

After a grand total of almost 3 weeks on antibiotics, several chest xrays, numerous needles and too many hospital cafeteria meals to count, everyone is home, happy and healthy in time for the holidays. Daniel is fully recovered, his counts have recovered solidly, and he has more than enough energy to tell me off, so that's always a good sign.

Daniel was very happy to learn today that his next chemo appointment in January will include a spinal tap in Cujo's room. He had a smile on his face like I had just told him we were having chocolate for breakfast. Ironically, just as he is getting quite comfortable with all of this, we are nearing the end of treatment. Our official end date is April 27, 2010, a date which seemed impossibly far away when we started all of this three years ago.

I'm very proud to say that Daniel is this week's featured hero at http://www.alexslemonade.org, please check him out.

I am very grateful that everyone is feeling good, and able to enjoy the holidays together. We wish all our family and friends a peaceful and beautiful Christmas, and a New Year full of health and prosperity. Merry Christmas to all!

Last night we walked 5K for the Leukemia & Lymphoma Society's Light The Night Walk. The weather was beautiful, and a good time was had by all. I'm proud to say that Team Daniel raised over $4400 for leukemia research!!

When we walked past Sick Kids, we looked up to see dozens of kids waiting at the windows, shining their flashlights down at us and waving. As you looked up the building, every floor was empty, until you got to the 8th floor. Home of the oncology department, the 8th floor was packed with kids waving and cheering for us. And we waved and cheered right back at them.

I thought then about what this weekend really means, and what I will be thankful for. Of course I am grateful that Daniel has done so well on this journey, and that we are nearing the end of treatment. But I am also so very thankful for the "silver linings" we have found along the way. We have met some amazing people, felt the love and support of our family and friends, learned patience and appreciation for the smaller pleasures in life, and been humbled by the breadth and depth of human compassion. We have grown stronger as people, and closer as a family. And I have seen a strength and maturity in both of my kids that makes me very proud to be their mom.

Daniel, you are the love of my life, and I will always be on your team.

And so the countdown begins...

It's been quite a summer so far, and it only promises to get better.
On June 23rd, Daniel turned six years old. It was a great day, what with the party, cake, presents and green mohawk. Not a bad look, but not for everyday, I think.
By the end of the day, our house looked like a toy warehouse. But it was well worth it, he had a blast; and it was so great to be able to plan a party without worrying whether he would be well enough three weeks down the road. Yay for normal life!!

Last week Hannah & I went to London with my parents; it was her special treat for being such a great big sister over the last couple of years. She has had to give up a lot because of Daniel's treatment, and we wanted to do something special just for her. So Hannah's first trip to Europe was a great success - she was good as gold, and had a great time, from the Tower of London to St Paul's, to Harrod's to Trafalgar Square. She's a great traveller, and a terrific big sister.

And on July 31st, we start another round of chemo, round #9 out of 11. It's a full day, including a spinal tap in Cujo's Room, so Daniel is stoked! He loves the spinal taps - specifically, he loves the propofol they give him to knock him out. He says it gives him 'brain freeze', then when he wakes up he gets Burger King - what's not to love? These are his favourite days. Mine not so much. But the best part of this is that we have 9 months of treatment left. Yes, that's right, just 9 months. We have been officially given our end date, and Daniel will finish treatment on April 27, 2010.

I'm already planning the party. Life is good. :)

A Dream Is A Wish Your Heart Makes

Well, we just returned last night from DisneyWorld in Orlando, courtesy of the Make A Wish Foundation. Daniel was granted a wish, and his was to go to DisneyWorld. We all had a wonderful time, and were treated like royalty all week! What a wonderful break for all of us, and a real treat to spend time together as a family; this was our first vacation since Daniel was diagnosed two years ago.

Firstly, I cannot say enough about the Make A Wish Foundation, and their partner organization in Orlando, Give Kids The World. GKTW is a resort which accommodates wish children & their families, and they go so far above and beyond any reasonable expectation of service, I am left speechless by their generosity and kindness.
That complete strangers would go to such lengths to make happy memories for children who have endured what no child should have to, is a beautiful thing.
Disney/Universal Studios/SeaWorld also went above & beyond, putting Daniel at the front of the line for everything from rides to meeting characters. It was like travelling with a rock star! And Hannah was treated equally well, which was a pleasure to see, since she has given up a lot in the last couple of years too.

We visited 8 parks in 6 days, and did everything on the kids' wish list and more. We did roller coasters, water parks, 3D movies, 4D movies, splash pads, wave pools, fireworks, international spy missions, ice cream for breakfast, horseback riding, mini golf, face painting, tattoos, dance parties, parades, Christmas parties, dozens of thrill rides, fed stingrays, petted dolphins, saw Shamu, chased aliens, played Candyland on a life-sized board, played arcade games, won talent competitions, met dozens of characters and superheroes and wrestlers, ordered pizza at bedtime and I even got a pie in the face, courtesy of Hannah. We all made new friends from Edmonton, Colorado & Ireland. We had a week of limitless fun and happiness, and it was amazing!!

Please check out our photo album; I have uploaded a selection of the best pictures of the week.

It's a small world after all

This time around, we have good news on two fronts.

Firstly, Daniel's bloodwork is looking good again. His counts were quite low in January, because he had been sick for a few weeks and his body was just pooped from fighting different viruses. So, knowing that iron aids in the production of blood cells, I set up a game for the kids. I made a poster with foods that were high in iron (beef kebabs, hamburgers, broccoli, cereal, etc), and put it up on the fridge. Then I filled baskets with treats from the dollar store, all wrapped up. Every time they eat something from the poster, they get to pick a prize from the treat basket. Luckily, my children are quite mercenary, and will happily change their eating habits if it means they get the goods. As a result, Daniel's blood counts have bounced back up, and are once again hovering just below the normal ranges, which is fantastic for a kid consuming the amount of pharmaceuticals that he is.

Our second bit of good news is that we got confirmation from Make A Wish for Daniel's trip. We'll be going to DisneyWorld in May, and we're all looking forward to it. Daniel is busy working on his list of favourite Disney characters that he wants to meet. Hannah and Daniel are so excited, and I'm sure they haven't fully grasped the whole scope of what awaits them. Waterparks, rides, ice cream for breakfast, fireworks every night...it's going to be an amazing week. They're pretty excitable over little stuff, so I think by the time May comes, they could be ready to explode!

I'm just chillin', baby...how you doin'?

Things are looking up

So it's been a rough few weeks. We were in Sick Kids ER with fevers three times over the holidays. Daniel has been sick with one thing after another (mycoplasma pneumonia, Influenza B, viral throat infection). The silver lining is that none of these is terribly serious. He just felt like "crud on a stick", to use his words. But he is much better now, and appears to be well on the mend.
He got his monthly chemo last Wednesday, and his counts were all low, but he has been fighting hard for weeks, and his bone marrow is kind of pooped, so hopefully with some rest and a better appetite, those numbers will go back up a bit next week.
Today our Make A Wish reps are coming by to go over some more info on Daniel's wish, which is a trip to DisneyWorld. Daniel wants to meet the Power Rangers. Considering his other possible wishes were meeting the Yeti, and partying with Darth Vader aboard the Death Star, this could be an interesting trip.
In other (very positive) news, I was reading a study completed recently at a major oncology centre in the US, which followed hundreds of kids with ALL. It looked at their bloodwork results throughout treatment, and their ultimate survival rates, and looked for correlations. And they found one very significant result. Looking at the lymphocyte count on day 15 of treatment (way back in the very beginning), kids with a count of 350 or less had an overall survival rate of 43%. But kids with a count of 350 or more had a survival rate of 87%!! That makes the Day 15 lymphocyte count a strong prognostic indicator of survival. Needless to say, I went running for Daniel's binder of bloodwork results, and went straight to Day 15. Are you ready for it? Daniel's count was 2,090. Yes, that's correct. Lymphocytes are a kind of fighter cell, they fight what is ailing you. So basically, my boy is an ass-kicking machine with a great outlook for the future. And a Boston accent, but that's another story. :)

What a difference a year makes!

I haven't updated in months, and no news is definitely good news.

Things have been great since the start of the year. Daniel's blood counts are consistently stable, he is feeling well and suffering very few side effects from his chemo. Life is very much back to normal. It's just that our normal includes lots of pills and more time spent at Sick Kids than most people, but things are going as well as they possibly could.

Daniel has become very accustomed to our hospital visits, and is very comfortable with all the procedures. He asks questions about what the doctors and nurses are doing, and when I tell him that we're going, he asks what kind of visit it will be: "Poke & Run" (bloodwork only), "Butterfly Kiss" (IV chemo through his chest port - the needle they use is called a butterfly and I tell him it is landing on his port to kiss him) or "Cujo's Room" (spinal tap - procedures are done in a room sponsored by Curtis Joseph's children's foundation and is decorated like the Leafs' dressing room). He is quite happy to go to the hospital. In fact, he was rather disappointed last month when I told him our visit would just be for a Butterfly Kiss. He asked if he could please go to Cujo's Room, couldn't I ask the nurse, maybe she will let us. I told our onc nurse that they must be doing one hell of a job if the children are begging for spinal taps!!

Summer passed without incident. Daniel is now in SK, growing like a weed and generally making me proud as punch at every turn. He is an excellent reader, a slick dancer, playground climber extraordinaire and is remarkably savvy at cutting large pieces of paper into many smaller pieces of paper. He asked for a black Spiderman costume for Halloween, then a few weeks later decided he wanted to be Darth Vader for Halloween, and would wear his Spiderman costume for Christmas (!).
And Hannah continues to excel in her role as big sister. She is in Grade 2, sings in the choir, ran cross country, plays hockey and has joined Brownies. I think if a permission form came home for walking on burning coals, she would sign up for that too. Maybe I can get the teacher to send home a form for the "laundry folding club" that meets in her room twice a week.

So although we still have 19 months of treatment to go, the worst is behind us. We are now counting down, not counting up. And everything is going as well as we ever could have hoped for. I know what I'll be thankful for this weekend.

What a difference a year makes