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, December 31, 2012

Out with a bang, 2012

If last night is any indication, 2012 is going out with a bang. A bang that includes high fevers, worried nurses, absent minded and dare I say, careless doctors ... and the sleepless and worry filled nights that seem to always come with life at CHEO. 

Phoebe spiked a fever yesterday morning and despite many signs pointing to a possible bladder infection, she was left to fight it off herself. Thankfully she is a bit better now than she was in the wee hours of the morning when her breathing was labored, her fever was high and not coming down with Tylenol, and she was waiting to receive antibiotics. We waited seventeen hours for antibiotics for a child who has a compromised immune system because the thought was that she would be able to fight this infection herself. Poor Phoebe, already climbing a mountain, was now expected to do more. It was nuts. This waiting turned the situation frantic. At one point this morning, there was a concern that Phoebe may be septic, and we know all too well how quickly a situation like this can turn from okay to terribly frightening and life threatening in a matter of minutes.  

Thankfully, she appears to be on the mend, she has received antibiotics, and as I write this she is not herself but is sleeping relativley peacefully. I hope the worst is over. 

I also hope to end 2012 on a positive note, with a happy, playful Phoebe. And without fevers. 

My family is very superstitious and because of this, as midnight approaches on the 31st of December, I always get a little anxious. I grew up thinking that in order to ensure that the year to come would be prosperous and good, certain things had to be done. I needed money in my pocket, a clean house, to be with friends,family, Jon ... and health. I am fairly certain that spending the eve of the new year in the hospital would not make the list. 

Custom also has it to celebrate the year that is coming, rather than the one that is past, but I am rewriting the rules. I am honoring 2012 for all that it has given us. 

Throughout 2012 we witnessed advances in the treatment of Leukemia, we saw great doctors at work and we benefitted from this hard work and these advances. 

In 2012, the Hospital for Sick Children (SickKids) in Toronto brought the NK cell treatment to Canada, to benefit children that might follow a path like Phoebe's. 

2012 brought us miracles, blessings and victories; some big and some small.

Phoebe started to eat on her own after being tube fed for 18 months.

We saw remission. Complete genetic remission and for many, many months we lived without  cancer. In fact, for all but one month of 2012, all signs and tests pointed to complete health, healing, and a future without cancer for our Phoebe. 

In 2012, at 14 months old, Phoebe walked for the first time. 

And then she ran.  

Phoebe had a tube free bath, she went swimming, she splashed in the splash pad and played in the sand at the park ... all firsts. 

In 2012, Phoebe and Mae attended their very first concert when they saw Raffi at the Roy Thomson Hall in Toronto. 

We witnessed a man walk over Niagara Falls on a tight rope. 

Phoebe Rose turned two.

We trick or treated for the very first time as a family. 

Mae started school, turned four and learned to ride a bicycle. 

In 2012, the bond between Phoebe and Mae blossomed into the most beautiful relationship I have ever been witness to. 

We celebrated one year without cancer in 2012 and we rejoiced as Phoebe reached her first post transplant birthday. I know now that Phoebe was not without cancer on this monumental day, but we believed she was and we celebrated it to be so, and to have had this day makes me thankful and hopeful that there will be another. 

2012 lifted us up far more often than it struck us down and even on the darkest days, hope triumphed over darkness. It was a year of firsts but although it gave us so much to be thankful for, it gave us back cancer and much work to be done in 2013.

We are welcoming the new year with heavy hearts that are made lighter with the hope and promise of a cure. 

Here is to our year. 

Lucky 2013.

Saturday, December 29, 2012

Phoebe the Rockstar

We have been able to get Phoebe out of the hospital during the day since Christmas Eve, returning around bedtime for overnight hydration and blood work, and hoping for some sleep.

Phoebe has been on steroids since all of this began and they are seriously affecting her sleeping schedule. She has gotten used to something of a rock star's schedule and is often in bed and asleep around 4am - earlier if we are lucky. The time before 4 am is often spent jumping on the bed, laughing, playing, or running laps around the ward. Thankfully, however, they have not affected her mood and she is still happy and joyful Phoebe, albeit a bit feistier. It is hard to tell though if this is typical two year Phoebe or Phoebe on steroids.

We are grateful for this time at home and the return to a somewhat normal life, even if it is only during the day. We have enjoyed meals together, lots of play time, time outside in the snow, and Phoebe has had her first ride on a sled (which she loved).

There really is not a lot to do at CHEO during the day (or night), especially during the holiday season as the play room is most often closed, and we can only walk around the ward and look at blank walls so many times before Phoebe gets bored and asks to go home.

So home we have gone and we are hopeful that this will continue.

Phoebe still looks wonderful and is full of energy and smiles. Only time will tell, how the chemotherapy and steroids she has received up until now have affected the size of the mass, but we are hopeful. Hopeful and anxious to put the second part of this plan into place and learn about what awaits Phoebe next for treatment of her disease.

We are grateful for all of the love and prayers that are being sent our way from all corners of the world, as well as corners close by - including the wonderful and thoughtful staff at CHEO, who have once again, become like family.

We have been the very thankful recipients of acts of kindness from strangers, friends, neighbours, family, and our wonderful community and we appreciate every word, act, gift, thought, prayer and message of hope.

A friend told me recently that she has been visualizing Phoebe walking across the stage as she graduates from University. What a wonderful image, and now whenever I am feeling overwhelmed or saddened by all that we are up against, I close my eyes and I picture beautiful Phoebe Rose - with curly hair like her Daddy and full of smiles, proudly marching across that stage. I can see her.

Friends and family are organizing a bottle drive in support of Miss Phoebe Rose. If you find you have extra empty wine and beer bottles after the holiday festivities and would like to donate them to help us to navigate the next path of Phoebe's treatment, please contact kdoull@gmail.com for pick up or donation details, or drop off at 49 Columbus Avenue, in Ottawa on January 6th, 2013, between 10am and 1pm.


Wednesday, December 26, 2012

Merry Christmas

Christmas time has come and gone. Phoebe was able to get out of the hospital during the day on Christmas Eve and day and so although it was not the Christmas I was imagining, it was spent together and for that we were blessed.

We opened our gifts in the comfort of our home, watched as Mae and Phoebe played with their new toys, and fought over a beautiful new Barbie Fiat. We had a delicious home cooked dinner delivered to us, we pulled our Christmas crackers, most of us wore the paper hats, and we clinked glass to plastic and wished for brighter days ahead. It was as perfect as it could be under the circumstances.

Phoebe is very fond of Santa, so much more than Mae was at this age, and so when Santa visited the children at CHEO on Christmas morning she was very excited. She reached for him as he approached, and with tears in her eyes, said "Santa!" He picked her up and she snuggled into his beard, all the while saying Santa over and over again. I think she thought that Santa would take her away from all of this and when he left without her, there were a lot of tears. I think Mae too wished that Santa was as magical as he is in her imagination.

It is so important to all of us to have Phoebe home, but I think that Mae misses the life she came to know with her best friend and sister the most. She is having a difficult time with all that comes with life in the hospital and she will often cry when she leaves Phoebe in the hospital. As we make our daily rounds around and around the ward in the wagon, she will point to rooms that are empty and say "he got to go home". At night time when she goes to sleep she wishes for "Phoebe to come home, and for her to get better and to never have to go back to the hospital". It is enough to break my heart and wonder why all of this is happening to our family.

Today Phoebe had another dose of chemotherapy, methotrexate, and the plan is to repeat this together with one other chemotherapy, every 10 days as a way to manage her disease while we wait to hear about other options. She has an ultrasound once a week to check in on the mass, the last showing that it had shrunk, but was still very much there. Her belly and her leg, however, are back to normal and are no longer swollen as they were when and after we were admitted. And her blood work continues to look good, apart from some electrolyte imbalances that we are managing.

I heard today that the bone marrow that was sent to St.Jude came back with a chimerism of 91% donor 2 cells (I am donor 2). We were already aware that Phoebe's bone marrow was affected, so this is not "news", however it was hard to hear. Perhaps it is because I have gotten so used to hearing news of 100% donor, or maybe it is because today I also decided I needed to cancel our flights to Memphis; flights that were supposed to take us there for Phoebe's one year post transplant check up, or maybe because it is just one more thing, one more piece of bad news, that makes it all especially difficult.

Regardless of what all of the tests show and the reality of what is going on inside Phoebe's body, she is doing well. She is running laps around the oncology ward, eating, drinking, playing, laughing and living life as full as she can right now - she is limited only by her IV pole and the limited areas to play here at CHEO. No one has told her that she is sick and to look at her you would probably not be able to tell. She is a bundle of joy and laughter and she makes it wonderfully easy to follow her lead.

Thank you to the CHEO Santa and all of the volunteers and child life who work hard to put a smile on the faces of children and families who find themselves in the hospital over Christmas. You truly made a difference in our day and helped us to create wonderful and lasting memories.

We learned something this year, or rather we were reminded of this because we have always known it to be true. We learned that it is all about time. It is about how you spend it and who you spend it with. Where you spend it, well that is just gravy.

Saturday, December 22, 2012

Phoebe and her super Daddy, home safe.

Today I wrapped my girls' gifts from Santa. I hid them out of sight and then I cried. I cried for the Christmas that we are supposed to have this year. The one with my family together under one roof, healthy and free from cancer.

Today I am hating cancer more than most. If that is even possible.

My thoughts are full of cancer. I read about cancer, I dream about cancer. Cancer is once again, running my life. It is not enough to have wonderful doctors who care fully and completely for Phoebe, I need to read and to know that they have and are uncovering every stone. And right now, sadly, there seems to be very few stones to uncover.

I have too many questions in my head that I am afraid to ask, and I still feel like one of these days I am going to wake up from this nightmare.

Cancer, is an ugly and hateful monster and I honestly don't think I have the words in my vocabulary to truly give justice to what this is like. To what it is like to be faced with fighting Leukemia a third time with a child who to everyone who sees her, appears perfectly healthy.

But then there it is, the key to all of this. Phoebe is, as usual, defying odds and I am full of hope that she will continue to do this. That she will continue to laugh in the face of cancer. And she literally is laughing ... everyday and most of the day she laughs. 

Jon and Phoebe have finally returned from Toronto. It only took 5 hours to fly from Toronto to Ottawa (you might note a wee bit of sarcasm). Those who are from the area will know that this is typically a one hour flight and it was. Phoebe was picked up by ambulance, taken to her private and tiny plane, they flew to Ottawa and the flight was bumpy, scary bumpy, and while everyone on the flight was close to losing their lunch, Phoebe was laughing. When I asked her about the plane, she said Weeeeeee!! After the flight they waited in the airport during flu season for another ambulance to pick up. They waited for an hour before Jon called 911. Yes, he called 911. He was concerned about the giant plane full of people about to head their way and frustrated by the waiting in a crowded airport during flu season, with an immuno compromised Phoebe. It seemed to work because their ambulance arrived shortly afterwards. 

So, here's to Phoebe's Daddy, who is always doing what he can to keep her safe. 

We are now back at CHEO, settled into our room with the walls that desperately need to be painted and we are preparing for a Christmas spent in the hospital. As long as we are together, it really doesn't matter where we are and we will make wonderful memories here as we would at home, but we are hopeful for a chance to take Phoebe home, even just for a few hours, so she can see her Christmas tree. 

Phoebe is here and for that we are blessed. Next year will be our year, for a Christmas without cancer.

Next year will be our year.

Friday, December 21, 2012

Step one ... complete

Step one is complete.

Phoebe and Jon arrived at SickKids late on Tuesday. On Wednesday she had surgery to insert a new central venous line - this is line number 10 and comes out of her chest. It is where all of her medicines and blood products will be given, and having it avoids the many, many pokes that Phoebe has endured over the past 10 days. She also had a femoral line put in to prepare her for the t-cell collection.

On Thursday Phoebe had her t-cells collected and the photo below shows her sleeping through this procedure.  Her blood was removed from one line, then separated to take out the t-cells, and the rest of her blood was put back in through her other line. She was able to collect enough cells on one day, which is good news, and meant that her femoral line was removed and she was restarted on steroids.

The t-cells should be on their way to Philadelphia. 

As I write this plans are being made to bring Jon and Phoebe back to Ottawa. She will be readmitted to CHEO as she is still very much in the acute phase of all of this and her electrolytes, among other things, have to be closely monitored, but we have a plan and we are moving forward.

Part of this plan is to wait and see. Wait to see how Phoebe's t-cells grow in the lab in Philadelphia, and whether or not she will be eligible for the trial. The concern right now rests in the fact that she has had steroids, something that was unavoidable due to the rapidly growing mass in her pelvis, but the doctors in Philadelphia are not sure if her t-cells will grow as they need to given the steroids.

We are taking things one day at a time and following the advice of Phoebe's many wonderful doctors. The plan in terms of treatment right now seems to be to give lower doses of chemotherapy, to hopefully shrink the mass and manage her disease while we wait to hear about one or both of these clinical trials. In the words of Phoebe's doctor at SickKids, high dose chemotherapy will not cure her and he is concerned both about how this would affect her eligibility for innovative and hopefully curative therapy, but also about the fact that to give her body more chemo in high doses, could possibly do a lot of harm.

The trial in Philadelphia, he said, is promising as the goal is to harness the power of Phoebe's immune system to kill Leukemia cells and if it is successful it has the ability to essentially vaccinate Phoebe against her cancer. It will use an inactivated form of the HIV virus to alter the immune system and train it to find and kill Leukemia cells. It is innovative and very promising research and we are very lucky to have it as an option.

But for now we wait. Wait to hear from Philadelphia. Wait to see improvement in the size of the mass. Wait for a treatment that will hopefully cure our Phoebe.

While we are waiting we will surround Phoebe with as much love and support as possible. We will follow her lead; which is joyful and strong and full of life. And we will enjoy this time.

This journey has taught us, among many things, that time is precious, and that whether it is spent in the comfort of our home, or in the hospital, it is a gift.

Phoebe and her new friends, the Ottawa Senators.

Monday, December 17, 2012

The beginnings of a plan ...

We have the beginnings of a plan ...

Phoebe and Jon are hopefully going to leave tomorrow for Toronto and SickKids. How they are getting there is still up in the air, but I think Jon is secretly hoping they will take the air ambulance/helicopter. The plan once they arrive is for Phoebe to have a central line put in and then she will undergo apherisis, to remove her t-cells in preparation for a very innovative clinical trial in Philadelphia. Yes, Philadelphia.

This trial has been referred to as a "breakthrough" and we are very lucky to have it as an option. No one knows for sure whether or not it will cure our Phoebe, but it has seen great success in others and we are hopeful.

All of this considered, we know all too well how complicated all of this clinical trial business can be, and so nothing is certain. Phoebe's cells, once they are sent to the Children's Hospital of Philadelphia, must grow well in the lab and the doctors there are unsure of how they will grow considering the fact that she has had steroids. So we will wait and see.

There is also a phase 2 trial at St.Jude which Phoebe has been placed on a wait list for. The wait is about 8 weeks, and right now, ironically, she does not have enough disease to qualify. Both trials should be available around the same time (it will take some time for Philadelphia to work with Phoebe's cells), and we have been told that we would be lucky to have a choice, meaning that this clinical trial business is complicated and many things have to align perfectly to ensure successful eligibility.

In the meantime, our doctors are working on a plan that will include a reinduction of chemotherapy, but the finer details of that are still being considered and we cannot begin anything until Phoebe's cells have been collected. I am anxious for something to start as although the steroids appeared to shrink the tumour, it is still very much there and leukemia, as we have learned, waits for no one.

We can not predict what the future holds, and if we are given a choice, we will never know which path is the right one to take. We are happy to have options, and to have many doctors working hard for Phoebe and we continue to take each day as it comes.

Phoebe is doing well. She asks to go home at least once a day, but she is making the most of her time at CHEO. To look at her you would never know that she is so sick, she is full of joy and is often a ball of energy. Last night she was up until the wee hours of the morning, playing sleeping bunnies with her Daddy, and despite him avoiding the part in the song where the bunnies jump, Phoebe would spring up in her bed anyway, shouting "watch me hop Daddy!"

We just love her so much and cannot wait for the day that we can bring her home again.

Thank you all for sharing in our hope and for loving our sweet Phoebe right along with us. She can feel your love, as can we and it truly means the world to us.

Saturday, December 15, 2012

Following the leader ...

Lately, I have found myself daydreaming.  Imagining my family walking down a path. In my vision we are camping and on a hike in the woods. Perhaps we are camping because it was something that we put off doing this summer, worried about Phoebe and promising we would do it next year. In this daydream walk, we meander, and we stop often as little ones often do to pick up twigs or rocks or to examine a different bug or plant that catches our eye, and it takes us a very long time to arrive at our destination.

I mention this now because I think it is very symbolic of where we are. We are walking down a path without a clear direction of where we are going and we are waiting. We are trying to be patient, but we are waiting. Sometimes when we are on those walks with little ones, we want to rush them, telling them that there is no time to examine every single twig, to make sure each crack in the sidewalk is stepped on, that we must get to where we are going, but right now is not one of those times. Right now we will wait because what we are waiting for will hopefully bring about as much wonder and miraculous discovery as do those findings by curious little minds in nature. 

After the stent surgery, Phoebe's kidneys improved enough to begin steroids and so far, we have seen much improvement. Her belly appears smaller, she is pooping and peeing normally which is something she wasn't doing before, and she is making progress with each day. She is making regular laps around the ward, with Jon or I speed walking behind her, trying to also manage and steer her IV pole. She is eating, drinking, talking, playing, and even doing some dancing. She is, as she always is, a joy and a wonder to watch in action. She is keeping the nurses busy, asking them to take blood pressure and temperature for each of the bears in her growing collection. And she is feisty.

We are hopeful and blessed. Many reading this may think we are unlucky, and we are definitely that as well, but we are also very blessed. We have love and hope in abundance and we have many wonderful people working to help our Phoebe. Doctors here, at SickKids and at St.Jude are working together to find the best treatment options for Phoebe. The first time we went through this, we were very much alone - searching for options for Phoebe by ourselves and feeling overwhelmed. This time thanks to the many doctor friends that Miss Phoebe has made, we are not alone and instead feel very supported, both in our search and our desire to continue treatment.

Unfortunately however, there is no set path. No definitive treatment for relapsed infant Leukemia, especially one that has relapsed twice and each time in such an aggressive way. We cannot just give Phoebe more of the same drugs that she has already had, drugs that didn't succeed in curing her Leukemia and there are no new drugs, approved by the FDA, to give. In fact, only one new drug has been approved for treatment of children's cancers by the FDA in over 20 years. 

And so, we are left with clinical trials. With innovative and promising new therapies that are still very much in the experimental phase.

The biopsy of the mass and tests of Phoebe's bone marrow show that we are dealing with the exact same cancer. The cancer that one doctor once referred to while speaking to us, as "the worst". This same cancer, hid out in Phoebe's ovary and then divided and divided and divided and continued to grow until it was a mass of cells so large that it caused Phoebe to have mild renal failure due to the pressure it placed on the ureters and kidneys. It did all of this completely undetected, until it began to press on a blood vessel which caused Phoebe's leg to swell, bringing us to CHEO on Monday.

We learned later, that the ovaries are one of a few "sanctuary sites". A place where Leukemia cells will go to hide, where chemotherapy and the therapy that comes with transplant, are unable to penetrate. 

And so, we once again find ourselves in a heartbreaking spot. Living life day to day, with one half of our family at the hospital and the other at home. There have been a lot of tears from each member of this family, but our heart ache cuts deeper than the daily struggles of hospital life. For the past year, we have witnessed the work of many wonderful doctors. We have been on the cutting edge of research and have been able to give Phoebe ground breaking and innovative treatment. We have been living on the front lines of cancer treatment and we have witnessed these wonderful, determined, and courageous doctors at work, knowing very well that they are limited. That there is no money, no attention, and not enough resources to properly devote to finding a cure. 

Phoebe is here, she is strong, but we are once again grasping at straws. Looking to clinical trials, and innovative therapy, and using our child to advance the cure with the hope that this one last treatment, will be the one. The cure. We believe that this is possible, and so we will continue fighting. Always following Phoebe's lead, which right now is so very strong.

We are hoping to have some kind of a plan in place this week. Phoebe still has a ways to go before she is eligible for some of the treatment that we are looking in to. Most clinical trials have a long list of eligibility criteria, but we are slowly checking things off the list.

Thank-you all for the outpouring of love and support. It means so much to us and I know that your love and prayers will help us to move this mountain.

Wednesday, December 12, 2012

Phoebe has relapsed. The mass in her pelvis is cancerous, showing up in early pathology reports with Leukemia cells and preliminary bone marrow results that look deeper than what can be seen from under a microscope show that she has the same genetic markers of her original Leukemia cells. The Leukemia that she has already fought twice has once again reared its very ugly head. 

Cancer is a monster. 

There really are no words that will even come close to describe how we are feeling. We are devastated, heartbroken, desperate, overwhelmed. We hurt for Phoebe, for how hard she has fought and struggled, only to be back here again. It is just not fair. 

We are taking things one day and one task at a time. Today's task was to get Phoebe to pee, which with the help of a stent in her ureter, she is doing very well. Tomorrow, if her kidneys show signs of improvement, we will begin to try to shrink the mass with steroids. 

We don't have a definitive or even a loose plan of treatment, our goal right now being to alleviate some pressure that the tumour is causing and to prevent further growth, while still protecting Phoebe's kidneys. When cancerous cells break down, like the millions that are cowardly hiding in my baby's pelvis, they release toxins that can permenently damage vital organs. So we need to regain some ground before we can look at the next task, which will hopefully be to rid Phoebe of this for good. 

We are not giving up. We are holding on to hope and breathing in and out, keeping Phoebe as close as we can as often as we can, and putting one foot in front of the other. 

We are blessed with many wonderful doctors, both near and far, who are working hard for our sweet Phoebe. And we are blessed with an army of love and support that we have felt at every step. Thank you all for holding Phoebe close. We need your love and prayers now more than ever. 

Tuesday, December 11, 2012

We Love Phoebe Rose

Once upon a time, an ultrasound meant a beautiful, hopeful, and mesmerizing few moments. The images of my babies dancing around in my belly, the sound of their heart beating. Beautiful. Yesterday, Phoebe had an ultrasound of her very own. It was not her first, she has actually had too many to count, but this one, second to the one that started us on this path, it is the most memorable. And the most heartbreaking.

Two hours, three people, too many tears, and too much confusion. I heard: what is that? Where is her ovary? Is that a vein? Is there blood flow? Is that a clot? What is that? So much confusion and I left feeling defeated and thinking of cancer. Stupid cancer.

I will take you back though because I know this will all seem confusing, considering my last post of celebration. 

I brought Phoebe in to CHEO yesterday morning because her leg is/was swollen. We had an ultrasound, and many hours later, we are now here, admitted. On 4 North, CHEO's oncology ward.

And just like that, our lives have been turned upside down once again.

Her ultrasound showed a "mass", but the images were not the greatest due to the fact that Phoebe was moving around a lot, so we were booked for an MRI. As we were about to leave to go home, to prepare to return the following day for the MRI, we were called back. I heard "you are not going anywhere" and subsequently learned that Phoebe's kidney function blood tests were all elevated. Her kidneys were showing to be in distress and she was admitted for hydration and a medication to bring down the uric acid that was showing up in her blood.

Because of Phoebe's history and the fact that cancer is on everyone's mind, she was also scheduled for a bone marrow aspiration and lumbar puncture.  The MRI results came in first, showing a large mass in the pelvic area.

I can now add a few more words to the list of those that will hunt me down in my dreams, and keep me awake at night. 

The preliminary bone marrow results, however, are clear of Leukemia which is good news. And her spinal fluid is also clear. We know now though, after having been through this many times, that we need to wait to see what the MRD (minimal residual disease) and chimerism show. And so we will wait. But we will take this tiny piece of good news, and run with it.

Phoebe is scheduled for a biopsy tomorrow.  After which they will also place stents/shunts? in her ureter to help her to pass urine and to assist her kidneys which are currently struggling due to the pressure being placed on them by the mass. Her kidneys, among other things, are our primary concern.

After the biopsy we will learn what this is. If it is cancerous. What the treatment course and options are. Right now we know very little.

We know that there is a large mass, and just writing that down is very difficult.

We know that Phoebe once again has to fight and struggle and work to overcome, just one more thing. Whatever this thing may be.

We know that so far, her bone marrow and spinal fluid look good. 

We know that many hard working, caring, and very smart minds are coming together to help our Phoebe. Our doctor at St.Jude is in touch with the doctors here and they are expecting an overnight delivery of Phoebe's bone marrow, to be tested for mrd and chimerism, the results of which we hope to know soon.

We are taking things one day at a time, although at times over the past two days it has been very hard. We are scared and overwhelmed. Phoebe is older and wiser now. She has asked to go home, she has asked for Mae, and she has cried out for the nurses to stop. Telling them, no and that she is finished. Mae has also cried for her sister, and has asked to see her. She kisses her head and hugs her close, and she is all too aware of the reality of this life. 

However, if you ask Phoebe how she is doing, she will tell you very definitively that she is "fine". She has started to take her beloved bear's blood pressure and temperature while the nurse takes hers. She is coping, and if she says she is fine, we will follow her very strong lead, as we always have. 

We will hold on tightly to hope and pray that as more results come in, our path becomes clearer and our sweet Phoebe gets better.