On October 26th, 2010, at 9 weeks old, Phoebe Rose was diagnosed with high risk MLL + Infantile Leukemia. On November 18th 2015 , she took her last breath. This is her story of hope and love in the face of cancer and despair. Phoebe always brought the joy and continues to inspire us to make a difference. It is best read from the beginning. Thank-you for visiting.

Wednesday, September 28, 2011

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.  

Monday, September 26, 2011

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.

Saturday, September 24, 2011

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. 

Thursday, September 22, 2011

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.

Monday, September 19, 2011

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. 

Thursday, September 15, 2011

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.

Tuesday, September 13, 2011

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. 

Sunday, September 11, 2011

Super Baby

Yesterday morning, after meeting with Phoebe's doctor and seeing that her white cell count had only climbed up 3 points to 40, we decided to wait - we desperately wanted the study drug to prove to be as magical and promising as it had in the beginning and our doctors remained hopeful in that possibility.  By mid afternoon, her white count had climbed to 65, and it became painfully clear that the study drug, although it appeared to work very well in the beginning was not successful.  We quickly moved on to Plan B and started Phoebe on chemotherapy in order to bring her white count down and help to ease some of the symptoms of her Leukemia.  Phoebe is quite asymptomatic, her only trouble being her very large belly - made large by a growing liver and spleen that is most likely also full of Leukemia cells.  Because her belly is so big it is pushing up on her lungs and her breathing is heavy and laboured.  She is still getting enough oxygen and able to play and be her one year old self, but it seems that she is working harder.  We hope that the chemotherapy will help to relieve some of this burden and allow Phoebe to be more comfortable.

We are meeting with Phoebe's primary oncologist on Monday.  He is a wonderful doctor, full of knowledge, hope and optimism.  A main focus of many of his is drug development and he is working to bring additional treatment options, new drugs and clinical trials to Canada.  We are anxious to speak with him and to learn more about next steps and to hear his ideas on what the best treatment is.  To treat such an early relapse seems to be fairly rare and at times we feel like we are in uncharted territory.  No one seems to know how Phoebe's bone marrow will handle aggressive chemotherapy and if it will recover.  To prepare for what will most likely follow a remission, we have also spoken with Phoebe's transplant physician who agrees that it is worthwhile to try to treat Phoebe's cancer but wants a second transplant to be innovative and novel as standard treatment was not successful.  We all agree that all things related to treatment must be taken one day at a time with a first goal of getting Phoebe safely through a re-induction of chemotherapy and her cancer back in remission.  

Today, after one dose of chemotherapy, Phoebe's white cell count has fallen to 23.  It is a step in the right direction and we are anxious to take many more steps this way.  As for Phoebe she is handling things very well.  One of the drugs she has started is a steroid, which comes with many short term side effects.  Among them, is an increased appetite.  As I write this, after polishing off nearly half of an avocado, Phoebe is happily munching on a banana.  The steroid also affects Phoebe's mood and behaviours as it would a bigger person too.  Phoebe becomes somewhat of a super baby.  She plays hard - lifting her toys above her head and then crashing them back down on to the mat, all the while hollering in what can only be described as a tarzan type of way, babbling and squealing.  She is restless, very excitable and harder to settle down for a nap, but still very joyful.  Before all of this, I could never have imagined  giving my baby steroids, but they like many other things we have encountered on this journey, are a necessary evil.  They work to fight against the cancer, and that - is a good thing. 

Friday, September 9, 2011

Anything is possible

Over the past couple of days we have had many meetings with many doctors.  Trying to decide what the best course of treatment is.  The study drug, although it appeared to work very well during the first 2 doses, has not seemed to have had any effect on Phoebe's cancer since then.   Because it is an experimental treatment, no one seems to know what it will or can do now, but there seems to be hope among the doctors and they feel that it may still have an effect.  All of this considered, we decided to give Phoebe the final dose today, and to watch to see if anything happens.  In the event that nothing happens and her white cell count continues to climb, we will pull her off of the study and begin standard chemotherapy.  No one is giving up. 

Today, Phoebe's white cell count is 37.  We seem to be back where we started which is frustrating to say the least.  If it is higher tomorrow, the doctors are recommending chemotherapy with the initial goal of lowering Phoebe's blast and white cell count.  This chemotherapy will help to control symptoms of Leukemia which will also help to make Phoebe more comfortable.  Then, more chemotherapy drugs will be added with the goal of getting Phoebe back in to remission.  Because this is the first relapse of Phoebe's cancer, the statistics regarding her chance of getting back in to remission with standard chemotherapy are good.  Well, I think they are very good especially compared to all of the other statistics that we have heard over the course of treatment.  The challenge it seems, is what to do once (because we will get there) Phoebe gets into remission.  There are many unknowns and we have many unanswered questions.  It is difficult to move forward without really knowing where we are going, but we have faith in our doctors and we believe that there is a light somewhere at the end of all of this, we just need to find it. 

Now for what we do know.  We know that our doctors are working very hard to find answers, and we are reassured to know that they are searching for the best possible answers for Phoebe.  We are aware that little is known about treating such an early relapse, and because we are reminded almost daily, we know that Phoebe's chances are very small (albeit mighty).   We know that each day is a cause for celebration because it is one more day that we have with Phoebe and another day that she is closer to a cure.  We know that many people are working behind the scenes and we witness first hand how the research and search for a cure is ongoing and advancing everyday.  We believe that a cure will be found in this lifetime.  And more than anything, we know that it just takes one.  One child, one doctor who believes that anything is possible, to make miracles happen.  

Please take a moment tonight to tell your loved ones just that ... that they are loved.  It is so important.  And please keep our Phoebe in your prayers.  She knows that she is loved and that is so important to me.

Wednesday, September 7, 2011

All you need is love ... and Kitkat

Today Phoebe is going to receive the fifth dose of the study drug.  Her white count has now climbed to 22 and we are hoping that this dose will bring it back down.  If not, we have some difficult decisions to make, and more difficult days ahead.  I think it may be safe to assume that if Phoebe's white count continues to climb, even after this dose, that the study drug has not worked.  The doctors have started her back on the mild chemotherapy that she was on before the study, to try to keep things under control in the event that the treatment isn't working.  Because the therapy uses an antibody to fight the cancer cells, there is a chance that Phoebe has developed a resistance to it, which might explain the initial success and the now climbing counts. 

We spoke with the doctor today about next steps and what we will do if the treatment is ineffective.  The option seems to be to try standard chemotherapy, but there are still many unknowns and no real plan in place to follow a remission.  It has only been 4 months since Phoebe's transplant and we are unsure whether a second transplant is a real possibility.  Phoebe will need to be in remission, which means that her bone marrow is free of Leukemia cells when viewed under a microscope, in order to have a second transplant.  So that remains the focus right now.  Standard chemotherapy has proven to be successful, it worked the first time to put Phoebe's cancer into remission so we are hopeful that it will do the same this time too. 

I think the reality of this situation, the severity of Phoebe's cancer, and the small but mighty chance that she has of survival are slowly sinking in.  Watching her white cell count climb over the past few days has made me realize now even more how aggressive her disease is.  Many thoughts have been floating around my head, and I often force myself to push them out and to focus on that small but mighty chance that we still have to fight and win this battle.  For now, our main focus as a family is to enjoy each day and to take things as they come.  This means multiple visits from Mae, lots of play time and dinners together in Phoebe's little room, and laughing ... as much as possible. 

The picture below is Phoebe discovering and very much enjoying one of life's most delicious treats ... chocolate - a KitKat to be precise. I know some people might think it crazy to feed a one year old a KitKat.  I don't think Mae had chocolate in a non cake form until she was at least 2, but Phoebe likes it and it makes her happy and so she can have it.  

Monday, September 5, 2011

We have joy

Phoebe received her 4th dose of the study drug today.  We are still very hopeful, but over the past few days her white blood cell count has been slowly climbing and today she had blast cells in her blood.  We are continuing on the trial, as it seems that it is too early to decide whether it is effective or not, and we are hopeful that tomorrow's blood work will show better results. As for other bridges that hold different treatment options - we will cross them when the time comes. 

Leukemia aside, Phoebe is doing well.  Smiling, playing and babbling and making many friends at Sick Kids.  She has daily visits from her big sister who is also making many friends at Sick Kids.  Phoebe's face lights up when Mae walks in the room and she loves to get hugs and kisses from her sister.  It is wonderful to see them bonding and developing a close relationship despite the abnormal situation that they are in. Mae is adjusting well to her big city life and the routine of switching back and forth between Jon and I that has become somewhat normal for her.

Phoebe spends most of her days doing what she is doing in the pictures below.  Smiling, playing and laughing.  The other part of her day is spent sleeping, being poked by doctors and nurses, and having her vitals taken, but it is these moments of joy that truly matter.  It is these moments that propel us forward and help us to believe that anything is possible. 

Friday, September 2, 2011

Busy Phoebe Rose

Thursday, September 1st 2011

As I write this, I am waiting in the basement of the hospital, in the MRI reception area. Phoebe is doing great, she looks well, is happy and full of energy, but right now she is having an MRI done - the doctors are looking at images of her brain - and I am having a very difficult time with this.  We have seen many doctors on our journey, from many different specialties, but neurologists - I was really hoping we wouldn't see neurologists.  Yesterday after Phoebe's CT scan, which also looked at her brain, but didn't give the doctors enough information regarding her nerves, we were told that Phoebe's scan looked good.  Not normal, but normal for a child who has undergone chemotherapy.  What does this mean?   I guess it means that chemotherapy, despite the many times we were told that it has little impact on the brain, really does. 

I took Phoebe down today, she was sedated which in and of itself is difficult.  To hold your baby and feel her go limp in your arms, to see her eyes roll gently to the back of her head.  Each time I bring Phoebe for a procedure that requires sedation I hold her and whisper that it will be okay, and then I leave the room and the tears start to flow. 

I waited in the waiting room for an hour an a half, which is twice as long as they told me it would be.  There is an element of fear in each of our days.  I am afraid of complications, of what is happening behind closed doors, of what the doctors are thinking, and ultimately of what the doctors will say once the procedure is over. 

I am also a bit obsessive about the brain and development as probably most parents are. When Mae was a baby, after each round of immunizations I would obsessively watch her to make sure she was still making eye contact and acting "normally".  Through all of this, I have discovered that "normal" is a relative term.  What was normal for Mae, is very much not normal for Phoebe.  Phoebe is Phoebe and regardless of what her brain looks like on a scan, she is developing and learning everyday.  There are areas where she has some delays related to the fact that much of her first year has been spent in the hospital, but she will catch up and regardless of treatment and what she is going through on any particular day, she is still learning and developing.  In the past few days alone she has learned to point, has made more new sounds, and she recognizes and waves hello and goodbye to all of her new doctor friends. 

Now it is the end of our day.  We have heard some good news and some not so good news from our doctors.  The good news is that Phoebe does not have any signs of Leukemic infiltration on her optic nerves.  Her optic nerves, in the words of her doctor are "pristine".  The not so good news is that she does have papilledema - which means that she has swelling behind both of her optic nerves which sometimes happens when there is increased pressure in the brain, but according to the neurologists, her MRI and Phoebe, she has absolutely no symptoms of this which is reassuring to the doctors. Tomorrow she is scheduled to have a lumbar puncture which will help them to decide what to do next in terms of treatment. 

"Two visit Phoebe" is living up to her reputation, only now it is based on the fact that at any given time she has two issues for her doctors to think about that require many visits from multiple doctors each day.  As for the fairly large issue of her relapsed Leukemia, her white cell count is 1.5 again today and she just received the third dose of the study drug.  On that front all seems to be going well, she has had no side effects from the treatment and she is still happy and joyful Phoebe. 

Thursday, September 1, 2011

Back in the Big City

And so we are back.  Back to Toronto, to the "city house" as Mae calls it, and the hospital.  To juggling all aspects of life back and forth.  To surviving.  Phoebe has started her treatment and has received the first 2 doses of the study drug.  Her white cell count today is 1.5, so it has dropped quite a bit after these doses.  Our doctor also says that her liver and spleen are not as big as they were when she was admitted (the Leukemia likes to hide out in these organs which causes them to become enlarged).  There is hope and it would seem that something is working. 

Phoebe is doing very well.  As usual, she is full of smiles and she is adjusting to life back in the hospital.  She has happily had daily visits from her big sister, and many of her doctor and nurse friends from 8B. 

Her eyes were tested a few days ago, as part of the study and the opthamologist found something that was unexpected.  They told us that her vision is good, but that her optic nerves are swollen and irritated.  A few days before this, Phoebe had a lumbar puncture with intrathecal chemotherapy, but because the eyes of a patient undergoing chemotherapy are almost never tested as part of their protocol, no one knows if this in itself can cause irritation and swelling.  As it can indicate a number of very serious problems, we have had visits from neurologists and they ordered a CT scan, which did rule out most serious complications.  Our oncologist is concerned that the swelling of the nerves may be related to Leukemia.  Sometimes, the Leukemia can hide out in the nerves - he called this place their "sanctuary" because traditional chemotherapy can't get to it.  Phoebe has no symptoms of this and her vision appears to be very good, but to rule it out, Phoebe is scheduled for an MRI today.  If by chance this is what they find, then it will give us a lot to think about regarding the next steps.  There has been a lot of mention of radiation in preparation for another transplant (after Phoebe gets back in to remission), and I think that if Leukemia is found in her nerves, radiation is the only treatment that is known to get to it and it will help us to make that decision.

All of this was found by accident but in a way it is helping us to make decisions about next steps, and once again we are aware of just how aggressive this disease really is. For now, we are making progress and focusing on the good things.  Taking everything one day at a time and happily watching Phoebe's white blood cell count fall.