The wait seemed like forever.  Anika and Katya were patient.  We played Go Fish.   We drank hot chocolate.  My mother and I fervently hoped that the doctors would give us a simple explanation for what was happening and send us home with a prescription.  We thought there was a chance that we would, indeed, enjoy a pleasant afternoon at the aquarium despite having woken heavy with fear.

A nurse finally called us in and the wheels were set in motion.  Anika was seen by a doctor and another doctor.  Anika’s blood was taken and analyzed.  It was not long before we were told that Anika could not leave the hospital because her platelets were so low that a simple fall could be very dangerous for her, which explained the bruising.   

Within an hour or so, one of the doctors asked to speak with me alone and explained that Anika was certainly suffering with the effects of Leukemia, though what kind of Leukemia was yet to be determined.  The doctor explained to me that Anika would be admitted to hospital and her treatment would start immediately:  chemotherapy, blood tests every four hours, a bone marrow biopsy, implantation of the VAD, on and on.    I was stunned even though I knew that Leukemia was one of several plausible explanations for the bruises and blood blisters.  I felt devastated and afraid for Anika and for my whole family.   There were no immediate answers to any of my questions.  I needed more information.

Over the next 24 hours, the oncology department of BCCH walked us through the first days of treatment.   Anika’s doctor delivered the news that Anika’s particular brand of cancer was Acute Lymphoblastic Leukemia, and she let us know that this was was a good thing.  In the world of childhood cancers, ALL is considered easy to treat, even though the treatment is long.  She explained that soon we would know some other important facts.  Type A or B?  Early responder or late responder?   The answers to these questions would determine the course of Anika’s ongoing treatment.

Thankfully, as you know, Anika did respond to treatment.  She responded quickly and dramatically, which meant that a predicted stay of two weeks turned into a month and a half in hospital.    We know now that she is very sensitive to medications, and her doctors watch her closely to make sure that she receives the doses that are right for her.

At the time that Anika was diagnosed, it all seemed so terrible.   Anika was sick and frightened.  Katya was sad to be without her mother and sister.   George missed us too.  He felt worried, responsible, and poured his energy into watching out for Katya.   Arlene was there for all of us – worried about me as well as her little granddaughters.  She stayed on for weeks to support us, then handed off the mantle to Grandma and Grandpa Urchuk, and to my sister Cait.   

Our family, friends and community all rallied together to make sure that we had social visits, food to eat, a shoulder to lean on.   Madhu, one of the mothers in Anika’s kindergarten class organized the other parents to make sure that we had a fresh delicious meal to eat almost daily.   Lucinda with wisdom born of experience, brought the exact things that would make the practical reality of staying in the hospital more tolerable – lip balm, a water bottle with straw, moisturizer, blue tack.   Our friends Rosanne and Gordon put off their trip to England to make sure that every need would be cared for.  Ruth and Pete, Colin and Allie, Anand, Shannon, Jennifer, Paul, my father, Dawna, Deborah, Mary, Jon, Anika’s teachers Monica, Peggy and Sayuri, and all our neighbours all pitched in to show their love and support.   Friends and family from all over sent letters, post cards, books and toys to let us know that they were thinking of us.

It’s been a difficult year all, in all.  Anika is through the worst of her treatment; she is in remission and her prognosis is excellent.   We still feel like we’re in the middle of it – I haven’t shared much about the ups and downs of maintenance – but now the end is in sight.  We have just one more year to go!  

I know that we would not have fared nearly so well this past year if it weren’t for the kind understanding and generous support that you, our family and friends, have shown us.   And of course, the care at BCCH has been fantastic.    We will take this opportunity, once again, to say thank you for all of your help.

As the third largest run in Vancouver, ChildRun inspires participants to raise funds for childhood cancer research and programs at BC Children’s Hospital. On Sunday June 5th, 2011, the 26th annual ChildRun presented by the Wilson Family will host runners and walkers on scenic 5 km and 1 km routes, followed by a carnival celebration.

Last year over 6,300 participants came out to run or walk the ChildRun, helping to raise a record-breaking $1 million. I hope that you’ll join me in the fight against childhood cancer and help BC Children’s Hospital Foundation reach this year’s goal of raising $1.2 million in support of pediatric oncology

Please support the our goal of raising $2,000 for the BC Children’s Hospital Foundation by donating now!

March 21 Update:  Thank you for your donations!  Anika and Katya enjoyed watching the funds thermometer rise higher and higher until it reached our goal of $2,000.   We have been inspired to reset our goal, and are now committed to raising $3,000 for BC ChildRun.   Please help us by sharing our donation page on Facebook!

This little episode underlines how grateful I am to be through the worst of our worries for Anika.  While in hospital, we saw a few families that we know from our springtime residency.  My healing thoughts and wishes are with them tonight.

We have had a few months now to reaccustom ourselves to a greater sense of peace at home. Anika has completed her first three-month phase of maintenance and she is doing well. There have been worries – they come with the territory – but nothing major. She is happy at shcool and, aside from the odd cold and cough, is the picture of health.

Katya misses Anika while Anika is at school. She is curious about the mysteries that her big sister experiences on a daily basis. Thankfully, they are able to spend lots of time together in the afternoons and on weekends. We have been devoting a lot of time to swimming which is something that we all enjoy. The girls are both very proficient at propelling themselves through the water now. Katya is able to hold her breath for ages!

For George and I, the last few months have really been a time to process all that we’ve been through as a family. The amount of energy it takes to work through the chain of feelings: anxiety, fear, sadness, guilt, relief, gratitude and joy, caught me off guard. I appreciate that we have the luxury to reflect at leisure in the knowledge that our family will be okay.

I look forward to being back “on line” and to being in touch with you, our family and friends on a more regular basis. We wish you a year of health, joy, peace and prosperity.

I am delighted to report that Anika is doing well on maintenance. She returned to school on November first and hasn’t looked back. Her teachers have commented on how she has changed in the last six months, and on the humour that she brings to the class room.

Watching Anika and Katya play this evening filled us with a raw kind of joy. Both of our little girls seem to have relaxed into this new routine. As a family, we have arrived at a place where we feel safe and secure. You can see the renewed confidence and enthusiasm in their play.

Rainbow over Victoria Park, Vancouver

In Canada, potential stem cell and marrow donor recruitment is by “One Match”: www.onematch.ca. 

In the US, it is handled by the the National Marrow Donor Program www.marrow.org

In the UK, go to http://www.nhsbt.nhs.uk/bonemarrow/

So far, we have been given a three-month plan.  It seems that Maintenance is broken up into three-month intervals, each one ending with a spinal tap.   During the next three months, we will be giving Anika oral 6MP every day, oral Methotrexate every Tuesday, Septra twice per day on Fridays, Saturdays and Sundays and Dexamethasone twice per day for one week out of every month.  We thought we were done with Dex at the end of delayed intensification – unfortunately this is not the case.  She will also have Vincristine once per month by IV during her regularly scheduled once monthly clinic visits.

I expect that the best part of maintenance will be settling into a nice family routine without the anxiousness associated with low counts and without endless clinic visits.  Anika will be able to go to school on most days, clinic days included.   The only days she is likely to miss are the days she is on Dexamethasone.  Unfortunately, Anika reacts strongly to Dexamethasone and she may not be up for school on those days.

Right now, Anika and Katya are thrilled about their Grandma and Grandpa Urchuk’s imminent arrival.  Hallowe’en is pretty exciting, too.  We look forward to posting a few spooky pictures in coming days.

Anika minutes after being cleared for Maintenance with Suzanne, nurse clinician; Dr. Lucy, oncologist and Janine, nurse.

Shannon, Will and little Winter joined us for our Thanks-Birthday feast.  The  ”Roast Bird” was delicious, and so was everything else.   Anika’s eyes were shining with excitement as she played us an improvised after-dinner ditty on her very own fiddle – a present from Nana and Poppy.

We enjoyed the break between the “Delayed intensification” phase and “Maintenance”.  Anika had two weeks with no medication except weekend doses of the antibiotic Septra.  At today’s clinic, Anika went in for alumbar puncture (LP) during which Dr. Lucy gave her an intrathecal dose of Methotrexate.   The rest of her medications are to be delayed by another week due to low counts.   She will begin taking oral doses of 6MP, Methotrexate and Dexamethosone as soon as her counts are high enough.

Despite low counts, Anika continues to dodge the various bugs that thrive in this autumn weather.  I hope that this continues and that her immunity rebounds before flu season is truly underway.

The last few weeks of treatment have left Anika with very low counts.  Her ANC is officially zero.  She is severely anemic, so received a red blood cell transfusion on Thursday.  Her Platelets are also critically low.  We expect that she will need a platelet transfusion by Monday if not sooner. We are beginning to see the same type of bruising on her arms and legs that led to our first trip to Emergency six months ago.  That having been said, this is the nadir and we expect that her counts will start coming up over the next couple of weeks.   

Anika is officially scheduled to begin the next phase of treatment, “Maintenance” on October 14, her 6th birthday.   She will not actually begin Maintenance for some time after that, however, as her counts need to recover before she can begin the next round.   

Maintenance will involve lower doses of the same chemotherapy drugs that she has taken throughout treatment thus far:  6MP, Methotrexate, Vincristin, Dexamethasone and a few others.   Since the doses are lower, they will not have the same effect on her counts.  Her energy will generally be good; her hair will grow back and she will be able to attend school most days.   We expect that she will complete this last phase of treatment in June 2012.  

Anika and Katya are both very excited because Nana, Poppy, Aunty Cait and Trevor are coming to celebrate Anika’s birthday in Vancouver.  Anika has requested a ”roast bird” with stuffing, cranberries and mashed potatoes.   We will oblige, delaying our Thanksgiving feast by a few days so that we can all give thanks together.  Believe me, we are thankful.