Going to Memphis

Earlier today I went to the passport office to apply for Phoebe's passport.  Thanks to a very thoughtful nurse practitioner at Sick Kids, the photos were taken at the hospital by the hospital photographer.   This meant that Phoebe was able to avoid the busy streets of Toronto and a crowded photography shop. With that first step out of the way, and plans to pick up the passport tomorrow afternoon, I called St. Jude to organize our arrival.  The doctors would like us there by October 6th (which is also my birthday, so happy birthday to me), and so we are making plans to leave the big city on the 5th.  This is all very exciting and incredibly overwhelming at the same time.  We have no idea what to expect but from what we have heard, and the few people we have spoken to, our expectations are high.   

We received some clarification today, from our doctor at Sick Kids, about what the plans are for Phoebe at St. Jude.  It seems that there are a few clinical trials that she is eligible for and what happens will depend on Phoebe, on whether or not she is in remission already and on how deep in to remission she is.  She may need more chemotherapy or treatment to help her get there, or if she is in a good remission, she may be able to go directly to transplant.  We have a lot of faith in our doctors, we have to as often we are moving forward without really knowing where we are going.  We do know now that we are all moving in the same direction, and that is towards a cure and that is enough to keep us going.

Phoebe is doing well, she has been without a fever for the past three days, so she has been taken off all but one of her antibiotics.  This means fewer beeps from her IV pump, and more time to play because she is not constantly being premedicated with sleep inducing gravol and benadryl to prevent side effects and allergic reactions from the antibiotics.  She has one more day of steroids and another dose of chemotherapy, and then she has a scheduled "wash out" period - part of the eligibility criteria for all of the clinical trials at St. Jude.  The plan is to test Phoebe's bone marrow once she gets to St. Jude and then we will be able to see if all of this chemotherapy has been successful and decide what our next steps will be.   

We are all very excited to board a plane on Wednesday and to start this next chapter.  Although we have no idea what to expect, we know that by going to St. Jude we are going to where Phoebe needs to be right now, and everyday we are moving closer to a life that is free from cancer and all that it brings.  Mae is also very excited, and if you ask her she will tell you very matter of factly that she is going "to get Phoebe all better, going to Memphis".  Hearing this breaks my heart a little bit as it reminds me of all that Mae has endured, but also of her incredible resilience, her strength and her awareness that she too is helping Phoebe to get better.  I believe that her energy and spirit is something that is willing Phoebe to fight, and one day they will both have the chance to reap the rewards of all of our persistance, determination and hard work.  

A village like no other ...

Mae and I had a beautiful and perfect day yesterday.  We spent time in the sunshine at the park, we played, went down the slide what seemed like a thousand times and we laughed.  Then, while I was pushing Mae on the swing I started talking to the mum beside me, who was also pushing her child.  It was a very lovely and "normal" moment.  She told me that her daughter, her lovely, giggling, talking and walking child, was 13 months old.  I couldn't help myself, I broke down and started to cry.  I thought of Phoebe, and all that she is missing.  About all of the time that she is spending in the hospital, time that should be spent in the park.  For the first time since all of this began, I really and truly felt sorry for myself and my family.   And then I thought about Phoebe again.  About bright and shining Phoebe Rose, and how she spends her days.  She loves life regardless of where she is spending it, and I believe that one day, she will play at the park.  She will.  And we will make up for all of this lost time. 

Crying at the park aside, us cancer parents, we are really no different from any other.  Our time is spent in the hospital, we eat our meals on our laps, and we don't sleep under the same roof, but our goal and our purpose are the same.  We love, we laugh, we care and advocate for our kids, we want what's best and we do our very best to make that happen.  Because this is true, we have learned as much as possible about Phoebe's disease, about how the body works, how chemotherapy is metabolized, long term and short term side effects, the names of more antibiotics than I have ever cared to know, how they work, what they do, we know what anti-nausea drugs work best for Phoebe and how frequently they need to be given, we know how to silence a beeping IV pump at all hours of the morning, how to correct air in the line, fix an occlusion, what position Phoebe's arm needs to be in in order for her blood to flow out of her line, and I could go on and on.  I have learned more about the human body in the past 11 months than I ever thought possible.  For me that is, I never really paid attention in science class.  More importantly, this situation has changed me, at the way I look at the world and at how deeply I value time, family and friends.  Because really, at the end of the day - if you have family, friends, love, laughter and time, regardless of where you are or what you are doing - what more do you need?  

And so we are making it work.  We are surviving the emotional, stressful effects of pediatric cancer, the isolation and separation, very much because we have a wonderful support system.  It is often said that it takes a village to raise a child, and in our case, this is very true.  Our village - our community both near and far has made it possible for us to be together, to be by Phoebe's side, and the energy, thoughts, wonderful messages and positivity that is being sent to Phoebe from all of you is incredible.  Phoebe can feel it.  I know she can and it is willing her to continue her fight.  There really are no words to express our gratitude.  We are truly blessed.  And as the season of giving thanks (here in Canada) is upon us, I would like to take a moment to say what I am thankful for - the abbreviated list.  I am thankful for our families and friends. I am thankful for Jon. For all of the people who have welcomed Phoebe into their hearts and into their prayers.  For doctors and nurses who take the time to sit down and to listen, who dedicate their lives and many long days to helping people like Phoebe.  For ongoing research and people as determined to find a cure as Phoebe is to fight her disease. For Mae's spirit, Phoebe's strength and both of their resilience. And finally, I am thankful for time.  However and wherever it is spent. 

And now for Phoebe ... Phoebe is doing very well, all things considered.  She has about one low grade fever a day.  Just enough to keep her doctors guessing and on their toes.  Communication between here and St. Jude's is ongoing, the latest news being that we should really be getting on with getting Phoebe her passport. The plan for tomorrow is to do just that. Doctors on both sides of the border are working to get Phoebe the help and treatment that she needs and a move to St. Jude's is starting to seem like a real possibility.  And that is one more thing that I am thankful for.

Phoebe's on the move

Putting one foot in front of the other, and moving in the right direction.  Phoebe's fevers have been less frequent and  low on the fever scale, but they are still hanging around.  The doctors are altering her antibiotics slightly just to make sure that she is well covered.  Phoebe looks very well, which is encouraging, but to Jon and I, not a big surprise.  Phoebe always looks good.

She is now about halfway through her month long re-induction treatment plan.  Throughout this time, we have been talking with our transplant doctor about next steps and he has suggested the possibility of going to St. Jude's for a second transplant. The thinking among our doctors seems to be that for a second transplant to give Phoebe the greatest chance at a cure, it has to be different in many ways from her first transplant.  They are hesistant to do the same type of transplant a second time and this is where St. Jude's comes in.  They seem to have many innovative and novel approaches to transplant for high risk patients like Phoebe, that have also proven to be effective.  Our road has been very bumpy and long, so to be able to go to St. Jude's at this point in the journey - it would feel a lot like winning the lottery.  The cancer treatment lottery.  When to further treat and try to cure Phoebe's cancer has come up against so much opposition, what better place to go than the hospital named after the patron Saint of hopeless causes?  We are far from hopeless, but to me, at this moment, they represent what Phoebe also is: a bright and shining light in a sea of darkness.  We still have many unanswered questions, and are not sure even if it is a real possibility, but together with our doctors at Sick Kids, we are taking as many steps possible to make it happen. 

In other Phoebe news, today I watched her do something that very closely resembled crawling.  With a look of obvious excitement and pride, she "crawled" across her mat. Phoebe is on the move, and in typical Phoebe fashion, she is doing it in her own special way.  Tomorrow she will start another 5 day course of steroids and as Jon commented today, by the time that is done she will surely be a match for Ben Johnson in the 100 metre sprint.  Oh, sometimes, you just have to laugh. 

Thank-you blood donors

A fever, in the cancer world, is a very scary thing.  Phoebe has had fevers off and on for the past 2 days.  Not high and not constant, but they are there and we don't like them.  The doctors have re-started her antibiotics, as in lieu of a functioning immune system, they are the next best thing.  Her current antibiotic count is now four, one is an anti-fungal and the other three protect against various types of bacteria.  She has also been started on an anti-viral drug, a preventative measure because she is high risk and the doctors aren't sure what is causing her fevers.  Despite all of this, Phoebe looks great.  The doctors come in to see her and the look on their faces is one of pleasant surprise.  She is defying the odds.  One of our nurses told me that after reading Phoebe's chart and history, she braced herself for the very sick baby that she was sure she would meet once she entered Phoebe's room.  She too commented on her pleasant surprise. Despite all of this, the look on the doctors faces, the comments of nurses, I am all too aware of just how fragile and precarious our situation is.

Right now we are doing what we do best, watching and waiting.  And hoping.  Hoping that Phoebe's fevers are not a result of something more serious. As for Phoebe - well, she is Phoebe.  Quite possibly the happiest baby I have ever seen and spending most of her days doing what she does best. Laughing, smiling and playing.  She is also very feisty and so when she is not smiling, she is getting very angry with her nurses and doctors when they approach her with their stethoscope. She does have some side effects from the chemotherapy, mainly nausea and a decrease in her appetite, but there is a real disconnect between the Phoebe that shows up in blood work to the Phoebe that we see playing and laughing everyday.  The Phoebe that we have come to know is mighty.  She has never paid attention to what her blood has to say.  She takes each moment as it comes, rejoices in the simple things in life, and she greets each day with a smile on her face.  We can all learn a lot from Phoebe.

And so in addition to watching, waiting and hoping, we are continuing to follow Phoebe's very strong lead.  Everyday we watch Phoebe for signs and symptoms that all of this is getting to be too hard, and each day, Phoebe tells us in her own way, that she is all right.  Today her blood works shows us that the chemotherapy is working.  Her white cell count is .5 and her other blood counts are also falling.  Today she will have a red blood cell and platelet transfusion.  Thank-you blood donors, I don't know what we would do without you. 

Thank-you also to all of you who have been hoping with us, and praying for Phoebe.  It truly means so much to us.

Hospital life

 Phoebe's tests went well on Friday.  She happily munched on a piece of pizza shortly after with her big sister as we anxiously awaited the results.  Her spinal fluid is still clear of any Leukemia cells.  Great news.  The increased pressure that was there during her last lumbar puncture is gone and so her drug count is now down by one as that problem is considered fixed.  We are still not sure what caused the increased pressure, the culprit seems to be one of the drugs she took post transplant but we may never know for sure. Her bone marrow showed a 60% reduction in blast cells.  The doctors are pleased with this result as it is a significant decrease when we are only 4 days into Phoebe's new treatment plan.  We remain cautiously optimistic and very hopeful that the next bone marrow aspirate will show that Phoebe's cancer is in remission.

We had another meeting with our doctor today, and the plan is to keep going forward with Phoebe's treatment and to test her bone marrow again in a month.  We have had some bumps on the road so far, related not to Phoebe but instead to the plan.  Over the weekend we discovered that one of the orders for a very important drug was not done properly, which resulted in Phoebe missing a few days of treatment.  The problem has since been rectified and the treatment plan altered slightly to compensate and we are now back onto a straighter path.  We have had our share of hospital related bumps on our road to recovery and this weekend we were reminded that even when things are checked and double checked, mistakes can still be made in the hospital world.  We are Phoebe's voice and it is our job to advocate for her and to make sure that her team is 100 percent present and behind her treatment plan.

Our weekend was not free of stress, but we enjoyed the time we spent together.  Mae and Phoebe had some wonderful playtime - building towers, crashing them down and enjoying dinner together in Phoebe's little room.

Days and nights spent in the hospital are long.  Days are made busy and full with play time, visits from Mae, various doctors and nurses, naps, walks, story time and videos.  We do our best to keep Phoebe entertained and stimulated, and we are more than rewarded by her many smiles and joyful laughter. At night time, after Phoebe goes to sleep, we find ourselves with many quiet hours.  Jon uses this time to develop one of his many hidden talents. 

This is one of my favourites. Beautiful Phoebe Rose. 

The very hungry Phoebe Rose

Just as in the regular world of soccer moms, hockey dads and so on; in the world of pediatric cancer, there are cancer moms and dads. I'm not sure how I feel about being called a cancer mom, I would rather be a soccer mom - but such is life. We have developed very close friendships with many of the wonderful and truly amazing parents that we have met on this journey.  At CHEO, many of the rooms are semi-private, and our roommate often became a sounding board, someone walking the same road who truly understood the intense emotions that come with having a child with cancer.  I was speaking with a fellow "Cancer mum" the other day.  Her daughter is also here at Sick Kids, receiving treatment to cure an aggressive brain tumour.  What she said, captured exactly how I feel.  She told me that she feels like she has a wound.  With each day that passes it slowly heals, but each time the doctors speak to her and focus only on her daughters's risk of relapse she feels like they are putting a knife to her wound and forcing her to start the healing process all over again.  Do they think I don't know, she said, that my daughter's cancer is aggressive?   I think just as our children need to heal, so do we as parents.  We heal a little each day, and then, just as this mum described, our wounds are re-opened by a few harsh words.  We know statistics, and chances, and risks.  We really do, but when faced with the reality of this terrible disease, we choose to hope.  To hold on to our own chance for a cure.

So, here we are.  Day 2 of Phoebe's re-induction chemotherapy.  As I write this Phoebe is receiving her second dose of chemotherapy.  It is a new drug that is being used in some re-induction therapies for relapsed Leukemia, and one of the few new drugs that has been added to the long list that have  proven to be effective in treating ALL.  It is a bright and unusual colour of blue and it also comes with a long list of side effects. So far, Phoebe is handling everything very well.  Her appetite and interest in food is increasing, most likely a result of the steroids, and today at lunch time her menu resembled a page from the story 'The Very Hungry Catepillar'.  She ate half an avocado, some banana, a bit of chocolate pudding, some cheerios, a lot of zesty tomato puffs (made by gerber, Jon calls them baby junk food, and Phoebe loves them) and a few bites of kit kat.  An odd diet for a one year old, I know.  But really, whatever Phoebe wants - Phoebe gets. 

The chemotherapy causes Phoebe's other blood counts to drop and today she needed a platelet and a red blood cell transfusion.  For the second time since Phoebe's diagnosis, we learned that there is a shortage of platelets - this is the part of our blood that helps it to clot and is obviously a necessary thing.  To help to balance out the supply and demand, Jon gave blood today.  While he gave blood, Mae played, laughed and created to her heart's content in a lovely drop in centre that we discovered on the main floor of Sick Kids.  This wonderful place is for siblings of patients at Sick Kids, is open all day and is staffed mainly by volunteers from the Women's Auxiliary.  When Jon went to pick Mae up, she told him she wasn't ready yet - could he come back later?

Tomorrow morning at 10:30am Phoebe will have a bone marrow aspiration and lumbar puncture with intrathecal chemo.  The bone marrow aspiration will allow the doctors to see how well Phoebe's bone marrow is responding to treatment.  In a perfect world, it would show a bone marrow free of any Leukemia cells, but as we know very well, this world that we are living in - the world where children get cancer, is far from perfect.  So instead we will hope that Phoebe's bone marrow shows a good response to the treatment and a reduction in the number of cancerous cells.  When her bone marrow was tested a month ago, 85% of the cells were cancerous.  Her white cell count is 0.7 today which is a significant drop and proves that Phoebe is responding very well to treatment, but the real proof will be in the bone marrow. Phoebe's new treatment plan consists of 4 weeks of chemotherapy, and this bone marrow test is the first of 3.  It will be tested again in a week in order to continue to monitor progress and to ensure that Phoebe remains on the road to remission.

A plan ...

This morning, at the suggestion of our oncologists, we met with the palliative care team.  A doctor and nurse who specialize in palliative and supportive care came to Phoebe's little room to speak with us.  We were dreading their visit.  We felt that bringing them into the picture meant that we would need to prepare for the worst, and we were frustrated at our doctors for suggesting this as we felt that it was one more way that they weren't listening to us.  Thankfully, we were wrong.  We learned that although to meet with palliative care specialists usually means that your child's condition has worsened and that their options are few, part of their job is to support families through difficult decisions, and to help Phoebe manage symptoms of her disease.  They agreed that as long as there are options we should pursue them and after speaking with them and explaining how we feel and what we would like - for the first time in a few days, we felt like we were really listened to. 

Now to go back ... yesterday our meeting with two of Phoebe's oncologists was frustrating.  Frustrating is the best word that I can think of to describe it but it really doesn't do the meeting and how we felt justice.  There have been times throughout this journey where we have felt like not only are we fighting cancer, we are also fighting against and with doctors - trying desparately to be heard,.  All of the doors that had been open to us before the clinical trial seemed to be closing, and all of the hope that we felt was shared by our doctor was suddenly gone.  The meeting was to discuss options, and once again we were given two.  Take Phoebe home, keep her comfortable and enjoy this time, or try once again to cure her.  We were clear and straightforward in our speaking, we had decided before they stepped foot in the room.  We want to move forward with curative therapy.  To this, the doctors said - okay i'm hearing that you want to go ahead with treatment, but I am going to give you a couple more days to think about it.  Really?  As I write this, I am still angry.

So that was yesterday, and today is a new day. After the meeting with the palliative care team, we had another meeting with Phoebe's oncologist.  It would seem that despite our frustrations, we were listened to and our wishes were respected.  A plan has been put into place that includes a re-induction of chemotherapy with a goal of remission.  Once in remission, the next step will be a second bone marrow transplant. The plan is loose and many details, mostly related to the transplant need still to be worked out, but the intended outcome is to cure and we feel relieved to finally have a sense of where we are going, and how we might get there.

As always, we are going to take everything one day at a time and we will continue to take our cues from Phoebe.  Bright and shining Phoebe Rose.  We know that the treatment may make her sick, and that she will probably have some difficult days ahead of her, but we are hopeful that those difficult days will lead us to a cure.