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.

Monday, January 30, 2012

Positive steps ...

Today Phoebe had another visit to the hospital.  Her blood was checked and everything looks good, her platelets are slowly climbing and her other counts are holding steady.  Her white cell count jumps around a bit and was low today - still in normal range, but anything white cell count related is stressful.  The doctors remain comfortable not doing a bone marrow test right now and will wait until day 100 or earlier if there is a reason to. They are happy with Phoebe's progress and that is what we are focusing on.  Positive steps forward. 

Phoebe's drug count has shrunk and this makes me very happy.  Now instead of 8 drugs twice a day, she gets 3.  The 3 that are left over are protecting her against viruses, fungal infections, and she still has the twice daily injections.  The protection against viruses and fungus is necessary until Phoebe has a normal amount of T-cells - they are the last type of white cell to come in because the immuno-suppression works against them.  Now that we are without that drug these wonderful virus and cancer fighting cells will have free reign.  Free reign to kick Leukemia to the curb. 

The puzzle with Phoebe's eyes remains just that, but it is not for lack of trying on the part of many doctors.  The opthamologist that has been seeing Phoebe has called in some troops - asked for help and advice from her collegues and on Wednesday 3 eye doctors are going to have a look.  For them to get a clear picture and run all of the tests they need to, it will require Phoebe to be sedated ... again.  Hopefully her friend George will be there.

I appreciate all of the effort that is going in to solving this problem, no one is giving up and the opthamologist that I spoke with today is determined.  Not only to solve the problem, but to save Phoebe's vision.  The fact that Phoebe's vision could possibly be at risk scares and worries me, but not nearly as much as many, many other things we have been and are faced with everyday.  Since Phoebe's battle with Leukemia began, we have lost many brave friends.  Wonderful, vibrant, incredibly courageous children are dying in the dawn of their lives.  When I hear of another life lost I want to scream and shout and tell as many people that will listen that we need help.  That there aren't enough funds dedicated to children's cancer research.  That many children's cancers carry a very poor prognosis, including Phoebe's.  That too many children are suffering with or dying from this disease.

We have seen incredible advances made towards a cure over the past 15 months and we know that research helps and that many people are working very hard, but sadly with the exception of St. Jude, the Children's Oncology Group and a few others, very few large Cancer related organizations dedicate much to Children's Cancer research.  Some shockingly give less than a penny raised.   Why is that?  One oncologist told us that it is simply because there is no money to be made.  The drug companies making these life saving drugs simply don't make a profit by developing drugs for children  Many are sick and dying, but not enough to make a profit.  That's something, isn't it?  

To the right of of this page is a list of many wonderful organizations who are working very hard to advance the cure for Children's cancers.  Our situation reminds us everyday, not just of the overwhelming need for more research and funds directed specifically to childhood cancer research, but also of the incredible people who despite all that they are up against work tirelessly to help children like Phoebe.  Although our journey has been long and not free from bumps, we feel very lucky to have benefitted so much from this hard work and determination. 

To all of the sweet and courageous warriors who are fighting, to the brave souls who have lost their battle, and to the many parents who are hearing those dreaded 4 words, your child has Cancer, for the first time today - I salute you, my heart aches for you, and I admire you. 

Friday, January 27, 2012


Phoebe is drinking from a cup.  I mean, really drinking from a cup.  She asks for her cup, sips from her cup, drinks and swallows whatever is in her cup, and she does it all by herself.  Up until the meeting of this major milestone, Jon or I would have to hold the cup up to Phoebe's lips to entice her to drink.  We would let drops of milk or water fall into her mouth and sometimes she would taste and swallow and other times, most of the time - she would let the liquid drip out of her mouth and down her chin.  This new skill makes me very happy.  So very, very happy as it means that there may be an end to the ng tube feedings that have been Phoebe's main source of nutrition for the past year.  She will have to drink enough by mouth to do this but it is one more big step forward and that is a wonderful thing.

We had a visit with a new neurologist yesterday.  Phoebe liked him very much and even allowed him to hold her - which is nothing short of a miracle as she really doesn't trust strangers.  He didn't have many answers as to the cause of the swelling on Phoebe's optic discs, but is going to be following Phoebe closely, running some more tests, and he wants her to have regular and consistent eye exams and lumbar punctures to make sure her vision stays as strong as it is and that there is no longer any more increased pressure.  She also may be seeing an eye specialist to make sure that they are not missing something.  Many doctors are now involved and working hard to help Phoebe, but once again, we are left to wait and see and hope that this does not cause any further or long term problems.

The neurologist also commented on Phoebe's developement and how she is slow to learn some skills.  He said that there is evidence on her MRI of some damage to the nerves of the brain - something that everyone else has commented on as "normal for someone who has gone through what she has".  He explained that we will not know how all of this has affected her until she is older - she may not be as cognitively alert as she would have been were it not for the copious amounts of chemotherapy that ran through her veins.  We will never know.  And frankly, after I put all of the guilt that I feel over my own baby having to endure what she has aside, I realized that it doesn't matter.  I will never look at Phoebe and wonder what she could have been - she has already proven herself spectacular and brilliant and I truly believe that her future is bright.  She can be whatever she wants to be and i'm sure she will do it with style and grace and in her own unique way.  I am just so relieved and happy that she has a chance to be. 

But for now, she doesn't say many words, she is not yet walking and she is not eating like a "normal" 18 month old - but look at all she can do.  Phoebe can attach a syringe to the tiny lumen of her central line after pretending to clean it like the nurses and Jon and I do.  We don't allow her to touch her own line but she has "practice" ones that the nurses gave to her.  She can put the clear sheath on the end of the thermometre tip - a task that is difficult for Mae to do.  She has figured out how to open the end of her ng tube and often puts pretend syringes in there too - mimicking how Jon and I give her medications.  One of her favourite things to do is to screw a top on and off a bottle of sterile water or to put the stethescope up to her chest and "listen".  All of this to say that her environment, her experience, has allowed her to develop differently - perhaps more slowly than others in some ways, but all things considered she is not slow, only different.  And she is fierce - there is no stopping our Phoebe. 

In other news, Phoebe had another central venous line inserted today, this will be line # 8 and this time it is a single lumen hickman.  Meaning only one tube is hanging from her chest.  To put in perspective Phoebe's unique situation, sense of humour and the unfortunate fact that she is a regular in the operating room - when she saw the anesthesiologist appproaching she looked up, waved, and said "George!".  And yes, his name is George.  With this line in, Phoebe avoids pokes for blood work and her weekly IVIG and it just makes things easier and less traumatic for her which is a good thing.  When she is further out from transplant, needing less frequent blood draws, no IVIG, and all is going well, the line can be pulled.  That will be a glorious day as it will mean a future of bubble baths, swimming pools, and playing without worry of getting too dirty or pulling on the line. 

Onwards and upwards ... day + 57.

Wednesday, January 25, 2012

Splish Splash

Tonight, for the first time in her life - Phoebe took a real bath in the tub.  Because of her very young age at diagnosis and the various central lines that she has had since then, she has never really taken a bath.  Or at least a real bath, with bubbles and toys, and the chance to splash and play.  So tonight, she sat up, surrounded by bubbles and toys and played and laughed with Mae. While I was running the bath she stood up next to it and lifted her leg, trying to climb in by herself.  Needless to say, she loved it. 

Tomorrow we have another visit to the hospital, this time to see another neurologist.  We are hoping that the addition of this doctor will help to solve the problem of Phoebe's eyes and the swelling on her optic discs, so that we can put all of the worry and questions associated with this behind us once and for all. 

In the meantime, Phoebe continues to do very well.  She is starting to act very much like a "normal" toddler, and like her big sister, rarely sits still.  Tonight she had rice, beans, her usual avocado, and sweet potato for supper and she has added cucumber, raisins, and apple to the list of foods that she will very willingly try.  Still tiny bites but she makes wonderful progress everyday.  

And ... this week's chimerism is 100% donor cells.  Go Phoebe go ...

Monday, January 23, 2012

Tub baths on the horizon ...

Our weekend away from the hospital was wonderful.  Phoebe is doing so well.  She has been standing and babbling, and catching up on all that she has missed.  Last night we made pizza for dinner, and Phoebe pointed excitedly at the pizza and said "za za" over and over again until it was cool enough for her to sample a piece.  She is still eating only tiny amounts but the effort is there.  She is trying very hard and is in love with snack food.  She is borderline addicted to goldfish crackers and we are working to expand her culinary repertoire.   

We were back at the hospital bright and early this morning.  Phoebe had her lumbar puncture, a visit from her doctor, an infusion of IVIG (an immunoglobulin that she receives weekly to boost her immune system), and she also had her central line pulled.  The lumbar puncture shows slightly elevated intra-cranial pressure.  The next step is to once again involve neurology in the hopes of solving this puzzle and preventing any further or possible damage to Phoebe's vision.  Phoebe's transplant doctor is still very happy with her progress and because her counts have been steady and her chimerisms have consistently been 100%, he doesn't see any need to do a bone marrow aspiration on day +60.  This was mentioned as something that is done often for high risk patients like Phoebe when there is cause for concern, and so it is wonderful news to hear that she is doing so well and impressing her doctors.  The next bone marrow aspiration, if all goes well, will be done on or around day 100 and in the meantime the weekly chimerism of Phoebe's blood will still be monitored.

Phoebe's doctor decided that the risk of the bacterial infection returning with her line still in is too high, and opted to pull it out.  And so, just like that while Phoebe was awake and in her crib a nurse practicioner pulled, or actually yanked it out of Phoebe's chest.  That, i'm sure was a lovely sight to see and I am thankful that it was Jon and not I that got the pleasure of witnessing it.  I heard that Phoebe was a trouper and seemed more shocked than hurt as it came out. That's our girl.  

Now, for the first time in many, many months - 15 to be exact, Phoebe does not have tubes hanging from her chest.  In 2 days she can actually take a real tub bath if she wants to - a real tub bath is something that many children going through cancer treatment are not able to do because of their central lines.  It is something that should never, ever be taken for granted.  Unfortunately, Phoebe's time without tubes is limited as another central venous line will be inserted on Friday.  The doctors feel that it is too soon to go without regular and reliable access to Phoebe's veins, for blood work, her weekly IVIG, and other miscellaneous tests and so line number eight it is.  Hopefully this will be her last.

In other Phoebe news, she is almost completely weaned from her immuno-suppressant. This drug comes with a particularly long list of side effects and we are happy to see it go for many reasons.  Without it, Phoebe's new immune system has free will to develop into a healthy disease fighting machine.  It is a fully functioning and cancer fighting immune system that will hopefully put an end, once and for all, to all things Leukemia.   

And so despite the fact that the doctors are still looking for solutions to Phoebe's eye issue, today has been a wonderful day. It has been full of hope and promise for a beautiful cancer free future.  It is day +
 53, we are allowing our minds to wander and imagine the tub baths and other wonderful things that are on the horizon, and we're doing it.  Go Phoebe go ...

 Snacking sisters. 
Hanging out at the St. Jude coffee shop and eating with a spoon today.

Thursday, January 19, 2012

Breaking Ground

We had a visit with Phoebe's doctor today.  She is doing well, her blood work looks great and he commented happily on how wonderful she looks. She, of course was smiling, laughing, playing and doing her thing.  She also appears to have a soft spot for her transplant doctor, and for good reason - she is wise and he is working hard to save her life.

Phoebe is now a whopping 9kgs, she is eating, growing, developing, and everything is moving forward which is so great. There has, however, been a giant elephant in every room that we have been in for a little while now.  Something that we have avoided asking or talking about, and depending on which one of us you talk to - we don't want to know.  I am referring to odds, statistics, and Phoebe's chance of relapse.  Before her first transplant we were told that she had a 30% chance of success, 70% of relapse.  This time around, the odds are the same.  I am not sure how I feel about this.  On one hand, although it may seem odd - to hear 30% makes me feel wonderful and full of hope - 30% is a heck of a lot more than zero, and after such an early relapse and all of the other odds and obstacles that have continually been stacked against Phoebe, I would have expected lower.  I will take 30 and treat it like it is the 100 % that it will most definitely be.

Our doctor also explained that Phoebe is part of a five year study, targetted at improving survival rates for children like her who are going through a second transplant - the hope is that the transplant that Phoebe received will prove after 5 years, to be more successful, to improve the odds, but right now there is not enough data to support this and so we have 30%.  We are lucky.  Phoebe is receiving cutting edge and ground breaking treatment and we may be sitting on the edge of something very wonderful.  Who knows what will be discovered.  I know that in five years, when my baby is in grade one, I will look back and marvel at all that she has done and continue to thank the folks at St. Jude for their unwavering hope, determination and fight towards a cure.  

But still, despite all of this, there is fear present everywhere and all the time.  Sometimes it is so overwhelming that it is best to not go there - to focus instead on the wonderful chance that Phoebe has been given rather than the possibility of its failure.  Afterall, Phoebe has proven time and  time again that she is better and bigger than this cancer and the odds that have been stacked up against her.  She is mighty, strong and she is winning this fight.  Our doctor mentioned that to be in a good remission, like Phoebe was before transplant, with no evidence of disease is a very good thing.  Nothing short of a miracle that should be celebrated.

We have the entire weekend free from hospital visits before Phoebe's lumbar puncture on Monday.  The sun is expected to shine here in Memphis and I think we will make the most of this time together, and focus on all that we have and the many, many things that we have to look forward to.

“If children have the ability to ignore all odds and percentages, then maybe we can all learn from them. When you think about it, what other choice is there but to hope? We have two options, medically and emotionally: give up, or Fight Like Hell.”  Lance Armstrong

Wednesday, January 18, 2012

Day +48

All is well here in Memphis.  Phoebe appears to get stronger everyday.  She is eating more, trying new foods, and enjoying playing with Mae.  She is more active and although she doesn't pull up by herself yet, she will stand and play and her legs are definitely getting stronger.

We had a follow up eye clinic visit yesterday and the opthamologist noticed the same swellling on Phoebe's optic discs.  There has been no change, be it better or worse despite the short course of medication she received.  Her medication was interupted by her stay in the ICU and had to be put on hold because of the many complications it creates with Phoebe's electrolytes.  The plan right now is to repeat a lumbar puncture on Monday to check for increased intracranial pressure which can cause this swelling.  The last lumbar puncture showed normal pressure so right now all of this is a bit of a mystery.  There seems to be some disagreement among the doctors also - the BMT doctors are not overly concerned and think it is related to the increased pressure that Phoebe had while she was at Sick Kids, that perhaps it is taking time to heal. They and the neurosurgeon both think that it is related to this and that it will improve once Phoebe is further off treatment.  The opthamologist is concerned but really has no answers or solutions at this point.  It is a bit frustrating, and needs to be solved and treated to protect Phoebe's vision.   Phoebe appears to have incredible vision, and although the eye doctors say that it is difficult to measure sight in an infant, it is obvious to us that she sees well and she appears to have no symptoms of increased pressure.  I would like to see the end of this tunnel and when we get there, I hope the BMT doctors are right.

Everything else is going well.  Phoebe's blood work looks great, and she hasn't needed anymore transfusions.  She is still on antibiotics for the infection but the hope is to complete the course in another week, and we are still holding our breath as to whether her line will need to be pulled.  That will depend on what happens after the antibiotics are stopped.  Let's hope the nasty bacteria stays away.

So for now, we are enjoying our time together, celebrating less frequent visits to the hospital, and making plans to try and entice Phoebe to eat enough to warrant removal of the feeding tube.  We are hoping and praying for answers and solutions in regards to Phoebe's eyes.  And we are putting one foot in front of the other and slowly but surely moving closer to home.  Day +48 today - almost halfway to day 100.

Saturday, January 14, 2012

The Rock

Jon is a stone mason by trade, an artist really.  He shapes, carves, cuts, and forms stones to make beautiful and wonderful things.  Fireplaces, patios, kitchens are among his creations that are displayed in homes in Ontario and Quebec.  Before any of this happened he was often called "the rock" by friends and family, alluding to his occupation but also his unyielding strength, loyalty, and determination.  Today this nickname is even more appropriate.  Jon is most definitely a rock.

Like many dads, Jon worked often when Mae was a baby, he rocked her and soothed her, but it was always after work and on the weekends.  If she woke in the middle of the night, I soothed her, if she was hungry, I nursed her - I was the go to parent and Jon was the provider.  Well, we both "provided", just in very different ways.  When Phoebe was diagnosed our routine and our priorites greatly shifted.  We desperately wanted to do whatever we could to save our Phoebe, so we put our lives on hold.  Phoebe was given a 10% chance of survival and we wanted to spend as much time with her and Mae as possible - we worried about the future, how much time we had together and we wanted to make the most of it.  We stopped working and started loving, cuddling, soothing, parenting.  24 hours a day, every day.

While Phoebe was in patient at CHEO, for the first 6 months of treatment, it was Jon that spent the majority of the nights sleeping on the chair-bed.  I was expressing breast milk that would be given to Phoebe through her ng tube and needed a private and clean place to do this.  Life in the hospital doesn't allow for very much privacy or free time, so, Jon did the night shift and I - the chatty and constantly questioning parent did the day shift.  Night after night  after night Jon soothed, comforted, rocked, settled, sang to, and loved Phoebe.  During the day he took care of Mae, brought her to playgroups and parks or spent even more time at the hospital.  He has often said that this situation has allowed him a closeness to his daughters that he would never have had otherwise.  Among many of the things that he learned as a "stay at the hospital parent" was how to comfort and sooth a baby on steroids. I challenge you to find a baby who is fussier, angrier or more difficult to settle than one who is on steroids, but Jon did it, night after night and he rarely complained.

During his quiet time with Phoebe he learned to draw with unbelievable skill, he read and read thousands of pages of history books, and he made many things better.  He donates platelets once a week, and has become something of a donor superstar in his ability to continually pump out 2 units of platelets every week.  Over the past 14 months, he has  educated himself and advocated for Phoebe's nutrition - he knows how many calories Phoebe needs as she grows and how to get them in to her in a healthy way, so that she will grow,. He has fixed cribs, made various hanging apparatuses for pumps and other medical equipment that has prompted nurses to call him "MacGyvor" and to ask if he has an engineering background.  He made Phoebe her very own personal home theatre in her crib with a small dvd player and some bungie cord, we kept track of where her injection was given by a simple stick-person drawing that he drew on the whiteboard (ingenious yet so simple!), he knows how to insert an NG tube, and regularly takes photos and videos for the doctors so that they are able to see what they might have missed.  He is often the first person to notice when something isn't quite right with Phoebe .

Today Jon, Mae and I are all in Memphis and lately I have referred often to Jon as the "unsung hero".  Looking after children is something that I have always done.  I stayed home with Mae and Phoebe and was with them 24 hours a day.  When Phoebe was diagnosed, not only did our world turn upside down, but Jon went from full time work to full time dad.  He has done this with so much grace, strength and pride that as I write this and think back I have tears in my eyes. 

There are many, many things that I wish had been different - above all I wish Phoebe could have had an easier start to life, but about the closeness that my family has developed over the past year - I would change nothing.  We have learned to live comfortably and happily in a very small 2 bedroom apartment in Memphis - a roof over our heads, love in our hearts, and hope.  Hope is what fuels us.  Don't get me wrong, our days are not always sweet and wonderful.  Going through a Cancer diagnosis, treatment and 2 bone marrow transplants with an infant and keeping a family together is not easy.  We disagree and have trouble managing life sometimes, but at the end of the day we are grateful.  Grateful for another day together, another day that Phoebe has survived and a day without Cancer.  We make it work and takes things as they come.  

And now about Miss Phoebe - she continues to do well.  She needed another transfusion of platelets yesterday which the doctors think is due to the infection, but her other blood work continues to look good.  Her hair is starting to grow again - very slowly and blond but it is there and she is still working hard at her eating.  She is a rock star, just like her daddy. 

Thursday, January 12, 2012


Phoebe made it back to the transplant unit, and has been steadily improving.  She is now getting 20mls per hour of formula with no problems other than the fact that she is very hungry.  We have been feeding her by mouth and she has shown a lot of interest in her cup, various snacks and whatever we have on the spoon.  All wonderful signs that she is feeling better. 

Plans are being made as I write this to send Phoebe home to the Target House today.  They have identified the specific type of bacteria and are adjusting the antibiotics once again to make sure that it is well treated.  She will be going home on at least 2 antibiotics in addition to her many other drugs.  It is a particularly stubborn bacteria so Phoebe may need to have her line pulled but right now all of her blood cultures have come back negative so there is no plan to do that and we are taking each day as it comes. 

Phoebe is doing very well.  Her last chimerism was 100% and the doctors have started the slow wean of her immuno-suppressant, Tacrolimus.  This usually takes about 4 weeks and doing it earlier than planned, we were told, will help with treatment of the Leukemia - in case there are any unwanted cells hanging around, having a well functioning immune system will help to fight them.  I was worried when they told us that they were starting the wean earlier, wondering if there was something that caused them to worry, but once again I was reassured that everything is going well.  Her immune system is steadily improving and she is almost to the point where she will no longer have to wear a mask when she visits the hospital.  She will still need to be somewhat isolated from the outside world, but we are moving forward and each day that passes is one more day in which we have triumphed over all things cancer. 

For now, we are hopeful that this will be our last hospital stay, the last time that we are separated by the fish bowl, and we are focusing on helping Phoebe to catch up on all that she has missed.  We are working with her physical and speech therapists to improve eating and gross motor development.  She is doing well and we are looking forward to all of the wonderful and "normal" things that are in store for her in the future. 

Tuesday, January 10, 2012

Better days

Phoebe is on the mend.  Still in the ICU but hopefully moving to the transplant ward today.  The first day in the ICU saw many worried looking doctors, coming in to check on Phoebe frequently and looking fearful for what could have been.  The second day saw the same doctors only this time they came in with looks of relief and amazement as to how quickly Phoebe had turned things around.  Sepsis can cause, among other things, organ failure and in a person like Phoebe who not only has a new immune system but is also on immune suppression, it can be very serious and sometimes fatal.  Thankfully it responded to treatment quickly and before it could cause further problems.  It was a very difficult and trying couple of days and we are thankful that we appear to be on a smoother path - once again.

There is an element of fear in each of our days.  Fear of Leukemia and relapse, of the unknown, and now of crazy and aggressive bacteria.  Yesterday in response to this crazy and aggressive bacteria, Phoebe's white blood cell count climbed to 25,000.  Seeing that number on the print out of her blood work caused me incredible anxiety, fear, and panic.  Phoebe has never had an immune system to mount any kind of response in the past, so we were somewhat unfamiliar with seeing how a "normal" bone marrow functions.  A normal bone marrow pumps out more infection fighting white blood cells to respond to and kill the infection causing bacteria., and this is just what Phoebe's did.  Amazing that it has the capability to mount such a response, and reassuring that it is not Leukemia.  Reassuring is too small a word to describe the immense sigh of relief that I let out when the doctors told me that this rise in white cells was not cancer related and I look forward to the day when my mind doesn't irrationally jump to all things cancer.

Today the doctors are planning to move Phoebe back to the transplant unit, and we have started to feed her again.  Very slowly because her gut took some abuse and temporarily shut down with the infection.  She is getting 5mls every hour, which is just enough to keep her gut working but not nearly enough to sustain her.  In total she will receive just 120 mls of formula today.  4 ounces.  She seems hungry and we would like to give her more but the doctors are worried and cautious and we trust their decision.  Before this happened Phoebe had made a lot of progress with her eating and weight gain and we were even imagining a future without the feeding tube.  We seem to be starting over but are hopeful that she will quickly recover and begin to love her snacks again.

For now we look forward to moving to the transplant unit, to hopefully allowing Phoebe to eat more, and to bringing her back home.  This situation has shown us just how fragile Phoebe is, and how quickly things can deteriorate and change direction.  There are no words to describe the relief we feel over how she has recovered and we are grateful for the care that she received in the ICU and the love she was sent from all of you.

Here's to better days ..

Sunday, January 8, 2012

The Rollercoaster continues ...

And the rollercoaster continues ...  Yesterday was a good day - Phoebe appeared to be doing well, smiling, laughing and clapping along to her favourite episode of Blue's Clues. Then, early this morning, she started vomiting and she spiked a fever.  Jon brought her in to the hospital, blood cultures, stool and urine samples were taken and during this time Phoebe's heart rate started to climb, reaching 230 beats per minute and her blood pressure dropped.  She was quickly transferred to the ICU. 

She has now had x-rays and a CT scan to look to see if her bowels are twisted and/or obstructed and surgery has been in to see her.  Many problems that occur in the bowels, it would seem, have to be surgically fixed.  Thankfully, she doesn't appear to have any of those problems, but they are monitoring her with blood work every six hours and more x rays and ultrasounds.  Her blood thinners are on hold in the event that she may need emergency surgery.  The blood cultures that were taken early this morning quickly grew a gram negative bacteria, one that is considerred to be quite ferocious and so antibiotics have been adjusted to treat it. The bacterial infection originated in her bowels, spread to one lumen of her central line and then also to her peripheral blood.  The line may have  to be removed, and if it is removed, because we are so soon post transplant, she will most likely need another one.  That will be line number 8.  I think. I have lost count. The low blood pressure she has been experiencing is a symptom of sepsis - this is where the bacteria enters and poisons the bloodstream causing many, many life threatening complications that I just don't want to think about right now.

The plan is to continue with antibiotics, bowel rest, and fluid.  The fluid will help to keep her blood pressure up, the antibiotics will hopefully kill the bacteria and the bowel rest will allow her to heal and to prevent any further damage that may require surgical intervention.  Right now she is also resting her body, connected to the monitor for her heart rate, oxygen saturation levels, and constant blood pressures are being taken.  She also has a tube in what was her free nostril to pull fluid from her belly and bowels. They are monitoring her very closely, her blood pressures and heart rate have been stable for most of the day and she is where she needs to be to get better, but I can't help feeling intense fear and panic over how quickly all of this happened and the fact that once again, Phoebe is in a very precarious and fragile place.

While the doctors do their thing to help Phoebe to get better, our part of the plan is to surround her with as much love, positive energy, hope and prayers as possible and to support her as she fights her way through another obstacle on her road to recovery.  Please help us to do this and send some love Miss Phoebe's way. 


Thursday, January 5, 2012

Kicking Leukemia to the Curb

Today we met a fellow Canadian.  Unfortunately, he is a neurosurgeon.  Phoebe had another eye exam this morning (by an opthamologist, not the Canadian neurosurgeon), and this doctor noticed the same papilledema (swelling) that was behind Phoebe's optic nerves on the last exam.  She recommended Phoebe see neurosurgery to rule out anything major.  The neurosurgeon commented that because Phoebe's intracranial pressure was normal at the last exam (they do a lumbar puncture to check this pressure), and her MRI appears to be normal, he didn't see reason for any of his interventions.  He did think, however, that if the swelling persists, in order to protect Phoebe`s eyesight, a surgical procedure that makes an opening in the sheath around the optic nerve to allow the extra fluid to drain out would be recommended.  It sounds invasive, dangerous, and intense and I am hoping that it is not necessary.

During our visit with this fellow Canadian, Phoebe was all smiles, waves and shouts of "Hiaaaaaaaaaaaa" - her way of saying hello these days.  She appears to really like to meet new doctors, and frankly, I have had enough.  No more doctors.  Especially neurologists and neurosurgeons.  I would like this mysterious problem to simply go away. Sometimes I wonder though if all of this, these many months of chemotherapy, 2 bone marrow transplants, and Leukemia - if this is just the beginning of the life affecting side effects that we are to come to expect.  Each drug that Phoebe has been on has pages of side effects, some life threatening, many life altering, and others very mild.  They range from rashes and high blood pressure to sterility and include everything in between.  In regards to side effects, I have always thought that we will deal with them when and if they come; I guess I wasn't expecting them to come so soon.  Papilledema, if left untreated can cause significant vision loss.  Add that to the list of possibly long term side effects and it is completely and incredibly overwhelming.  Is it too much to ask to make it through all of this completely unscathed? 

On the bright side, and there is always a bright side - Phoebe continues to do and look very well.  Today we met with her transplant physician, who she was also very happy to see.  She smiled and laughed through the visit and he commented on how well he thinks Phoebe is doing.  Everything transplant related, he said, is going perfectly.  Her counts are great, her graft is strong, and her chimerism is perfect. Oh, and there is no evidence at all of any disease.  Anywhere.  He said that the job now is to make sure that everything continues to go well, but he is hopeful and very optimistic.  He used the term "success" when discussing the future and Phoebe's transplant.  A hopeful and optimistic doctor, we have learned, is truly a wonderful thing. 

In other positive and encouraging Phoebe news, she is eating more and more each day.  She is still not taking nearly enough to warrant removal of the NG tube.  The tube that has pretty much become a part of her body for the past 14 months, but we are definitley making progress.  Jon and Phoebe make quite the team at mealtimes - he has always had an amazing ability to get her to eat.  She will always open her mouth for the spoon or the cup when he is holding it and considering all that she has been through and the many reasons she has not to eat, it is nothing short of a miracle and Jon, the miracle worker.  In the past when all of this began and Phoebe refused to drink from her bottle, in frustration I left it up to Jon and asked him to "get her to drink". Within hours, even if it was just a couple ounces, the miracle worker would make it happen.  We have learned through trial and error of late that Phoebe likes icecream, will drink milk from her cup, and very much enjoys picking up and eating very small food.  Her time spent in the hospital has blessed her with incredible dexterity and pretty amazing fine motor skills.  Yesterday she was stacking and successfully making a tower with her tiny corn and peas.

And so despite the ups and downs of hospital and post transplant life.  The possiblity of some very overwhelming side effects and  visits from many, many doctors - we are moving forward.  One step at a time, one day at a time - we are doing it.  Kicking Leukemia to the curb.

Tuesday, January 3, 2012

Happy New Year

In the world of bone marrow transplants, we have hit another important milestone.  We are now able to visit the hospital every second or third day for blood work and a check up, rather than the daily visits we have gotten used to.  Phoebe is doing well.  Today, her blood work looked good.  Her bone marrow is producing many cells, including platelets, healthy white blood cells and red blood cells.  Her white count is 9 today, which because of what brought us here to St. Jude and all that we have been through, caused me to worry.  It is completely within normal range but when you are used to zero white blood cells, 9 can seem odd.  Thankfully, after talking with Phoebe's doctors, I was reassured that all of those cells are good ones.  No sign of Leukemia. 

We finally received most of the long awaited bone marrow results.  The chimerism shows that Phoebe's bone marrow is making 100% donor 2 cells. This means that right now, all of the many blood cells that are being produced in Phoebe's bone marrow are donor 2 cells. My cells.  There is no sign of any of Phoebe's cells, or the first donor's cells.  And this, is simply fantastic news.  The results of the cytogenetics and MLL (multi lineage Leukemia) gene testing are all negative for any signs of this gene or Leukemia.  The MLL gene is often found in infant Leukemia and is one of the factors that makes treatment difficult and complicated and associates the disease with a poor prognosis.  To never hear the words, multi-lineage and Leukemia again would make me very happy.  The final result that we are waiting for is the minimal residual disease test, which looks more deeply for Leukemia cells.  It can find as few as one cancer cell in a million healthy cells and is an important way of determining how successful treatment has been.  Phoebe has never had this test done before and we are anxious for the results.

In other Phoebe news; she is going strong.  Crawling, standing, babbling, clapping, pointing, blowing kisses, and doing some talking and eating.  All of her tricks that disapeared soon after transplant are back and now we have nothing but growth to look forward to.  In some ways it is hard to imagine a life without chemotherapy, the hospital, and all things Leukemia related.  It has run our lives for the past year and a half but as each day passes, we move a bit further away from the fear that surrounds all things Cancer.  We are hopeful that one day, Cancer will no longer be at the forefront of our minds, that we will look back and say - "remember that time we lived in Memphis?", and then we will look at Phoebe and think of how amazingly far she has come.  One sweet day.

Right now we have much of the same to look forward to.  Phoebe will be monitored closely in Memphis for at least 100 days post transplant.  We are currently on day +33.  She will need to be somewhat isolated from people, crowds, and public places; only visiting the Target House and the hospital for the next 100 days at least.  Her immune system is recovering and because she hasn't been able to develop immunity to anything, or receive any vaccinations, she is succeptable to many viruses as well as bacteria and germs.  We feel very lucky and blessed to be able to spend these 100 or more days in Memphis, together as a family.  2012 is off to a wonderful start.