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, October 31, 2011

Hospital Halloween

Phoebe is back in the hospital.  She spiked a fever yesterday afternoon, so she was admitted, blood cultures were taken, and she was started on yet another antibiotic.  Her temperature has since come down, and she is still her happy and smiling self, so as long as no source of infection is found and she remains without a fever, she could be returning back home with us as early as tomorrow.  If so, this will be the shortest hospital visit in Phoebe's history.

The Interleukin 2 injections that Phoebe receives can produce flu like symptoms, and occasionally fevers, so we are hoping that that is all it is.  She has one more injection to receive and then it is all rest, all the time until she starts her pre-transplant conditioning.

Despite the fact that we were in the hospital today, we had a fun-filled and exciting Halloween.  Halloween at St. Jude is a really, really big deal, and the people who work here go out of their way to make it a special day for the kids.  It is overwhelming in the best way possible.  Each area of the hospital chooses a theme and they decorate and dress up according to it.  One clinic was dedicated to the muppets, another to Star Wars, the 60's, 70's, and 80's were all represented, there was a zoo, a slumber party, farm, Cruella D'Ville and many, many Dalmations (dressed up, not the real thing), and a rock concert.  Michael Jackson, Elvis, KISS, Taylor Swift, Lady Gaga, Justin Beiber - they were all here singing their hearts out - again not the real thing, but possibly better .  The kids travel around the hospital, through each themed area, collecting candy.  Mae had a blast.  Phoebe was upstairs as an inpatient where all of the dressed up staff travel to each room to drop off candy.  Because Phoebe has a weak immune system and doesn't eat candy, we opted out, but a bag was placed on her door anyway and filled with things that she might like.  Cheerios, animal crackers - no one is left out on Halloween.  Phoebe caught a glimpse of Chewbacca, Princess Laya, Mario, Luigi and Snow White walking by her room today and her excitement and laughter were impossible to contain. Thank-you once again to the folks at St. Jude for exceeding my expectations, bringing great big smiles to Mae and Phoebe's faces, and for working so hard to better the lives of all of the children that are here.   Next year's Halloween has a tough act to follow. 

Saturday, October 29, 2011

Dodging bullets

In our world, uneventful days are the best days.  Days free from appointments, blood transfusions, fevers, xrays, scans, and all the other hospital and Cancer related things that usually fill Phoebe's time. 

We have now been home together for one week.  Each day that passes without fevers or extra trips to the hospital, I thank my lucky stars, God, the many angels who are looking down on us, for giving us one more day as a family.  I thank the folks at Target House for understanding that part of healing and living a good quality of life is to be with the ones that you love.  I feel very lucky that we are all together, I have met many parents who are here without their spouses, other children, who are isolated and alone.

Phoebe is still receiving her injections of Interleukin 2 - the food for the NK soldiers, and her white cell count is still zero.  What happens next depends on Phoebe, on her disease, and on how well she has responded to therapy.  A plan for a second transplant is in the works, and we even have a tentative date, but Phoebe's bone marrow first has to be tested.  The doctors may decide to move quickly, to start the transplant process before Phoebe has completely recovered from the NK cell therapy.  They are concerned that allowing Phoebe's bone marrow to recover white blood cells, also gives her Leukemia a chance to rear its ugly head.  It is a fine and delicate balance.  Phoebe has been without a functioning immune system, since she relapsed in July.  She will be without a properly functioning immune system until many months post transplant.  That is a very long time without the ability to fight off infection.   Phoebe is dodging bullets everyday.  Today, she has 3 open wounds on her body, caused by recent skin biopsies, a PICC line removal, and central line insertion.  All of these sights are closely monitored for infection, because the risk is very high.  Our doctor describes her as a pin cushion, which is an unfortunate but realistic analogy because her little body is full of marks from daily injections, bruises as a result of low platelets, and wounds.  The antibiotics help to keep infections at bay, but we are aware that complete healing only happens with an immune system.  A person needs good white blood cells to heal, and right now Phoebe has zero. 

At times I feel like I am watching the events of my life unfold as if they are the most frightening and suspenseful movie I have ever seen.  I am in the theatre, on the edge of my seat, biting my finger nails, holding my breath, and bracing for the moment in the movie when the entire audience will scream out in pure fear.  The paralysing kind of fear that causes your heart to race and your palms to sweat.  And then I am waiting for the moment after that scream, when everything is calm.  When we realize that it wasn't so scary afterall, just the wind and a dark night. 

Today after a morning of playing and crawling around after her big sister Mae - her favourite thing to do right now, Phoebe had another quick visit to the hospital.  Monday is a big day of appointments, visits with doctors, blood work for Phoebe and a big day for Mae too because apparently here at St. Jude, Halloween is a really, really big deal.  We are hoping that in between her busy schedule, and with her mask firmly in place, Phoebe can catch a glimpse of Halloween, and maybe even pick herself up some kit-kats.

Wednesday, October 26, 2011

One year later ...

A year ago today, Jon and I heard 3 little words that would greatly change our lives.  Much of that night is still a blur of activity, but those words: Phoebe has Leukemia, those words will forever be ingrained in my mind.  

Five days before that fateful night, Phoebe was seen by her family physician who discovered that the lymphnodes in her groin were swollen.  Without making her worries clear, she asked us to go to CHEO for blood tests and an ultrasound.  We had to make appointments for these tests, and today, knowing the incredible speed at which Phoebe's cancer progresses, this seems crazy.  Before our scheduled appointments, and late in the evening after Phoebe saw her family physician, I brought her in to CHEO with a fever.  I was anxious because I had done some reading and worried that our doctor was suspecting cancer.  That night at CHEO, we were seen by two doctors - a resident and an attending physician, I told each of them about the lymphnodes, and the attending physician told me - these words will also never leave me.  He said "I know what your doctor is thinking, but frankly, cancer at this young an age, is so rare, it is practically impossible".  Impossible.  If I have learned anything over the course of this journey, it is that nothing, no matter how strange, unlikely, rare or unexpected, is impossible.  In the end, Phoebe was not examined that night and no tests were run to determine the source of the fever. It was blamed on the immunizations she had received at her doctor's appointment earlier in the day and we were sent home. 5 days later we arrived back at CHEO for our scheduled appointments and Phoebe was ultimately diagnosed with Cancer.  From the time of her blood tests at 12pm to the time it took us to get back to the hospital at 6, Phoebe's white blood cell count had climbed from 575,000 to 674,000. 

If I could go back in time, I would ask those doctors to just do the tests that night. It wouldn't have changed the outcome, Phoebe was always going to have cancer, but it would have meant many thousand fewer nasty cells, the cancer may not have spread to her central nervous system, Phoebe would have been 5 days further into treatment.  I am telling this part of Phoebe's story now, because I think that it is important.  Phoebe's cancer is rare, but not impossible, and Cancer in children is perhaps not as rare as some may think.  Today in the US, 46 children will be diagnosed with Cancer, 7 children will die from Cancer.  Despite the fact that Cancer is the number one disease killer of children, childhood Cancer research is grossly underfunded.  Some major organizations dedicate less than a penny of total fundraising efforts to children's cancer research.  I believe that the more awareness and noise that is made about this problem - the lack of funding, the incredible number of children fighting with or dying from this terrible disease or the children who are living with devastating long term side effects, the more likely there will be change. 

And so here we are.  One year later, many miles from home at St. Jude Children's Research Hospital.  Today Mae and I went to a Halloween party, sponsored by Target Stores for the children of St. Jude and their siblings.  It was held in the Danny Thomas/ALSAC pavillion on the St. Jude campus.  As we sat listening to music - a live performance by Kelly Pickler of American Idol fame, and talking to friends, something on the ceiling caught my eye.  Written there in beautiful cursive writing were St. Jude founder and hero, Danny Thomas's words: "no child should die in the dawn of life".  Looking around the room at the many beautiful and courageous children, all in costume, and many fighting for their lives, at the parents who wake up every morning to the reality that their children may not live to see another Halloween but like us are still hopeful, determined, and joyful,  I was overcome with emotion.  At that moment, the seriousness of Phoebe's disease, her incredible fight, all that she has been through this past year, combined with the many very sick children in that room today, all of us surrounded by so much love and hopeful energy - had me close to tears.  Where we are today, in Memphis, is not where we hoped or expected we would be a year ago today but we are so very grateful for this second chance.  Thank-you to the doctors and nurses that we have met throughout the past year, who believe that anything is possible, even the good things, and for never giving up on that hope or belief in a cure. 

And now for Phoebe, Phoebe is still home and happy.  She is crawling, scootching, and doing a bit of standing on her own.  Loving her big sister and this time that they have together.  Our biggest concerns right now are her nausea and vomiting and the fact that she is, as usual, without a functioning immune system.  She has regular visits to St Jude for blood work, transfusions, physical therapy and doctor visits.  And we are following her lead, enjoying this precious time that we have together before Phoebe will inevitably be admitted to the hospital again before transplant. 

Sunday, October 23, 2011

Home is Where the Heart is

It is often said that home is where the heart is.  I think this is very true for our little family. For us, at this moment, home is not defined by the walls that surround us, but instead by the people who live within these walls. We bought a new house and moved in about a month before Phoebe was diagnosed with Cancer.  This new house has been lived in by all four of us for less than 3 months.  I kind of forget what it looks like.  Right now, it is our house, but it is not home.  Home is where the heart is, where Phoebe and Mae are, and where we can all be together as a family, be it the hospital, the city house, the Target House, or a tent in the backyard.

So, Phoebe is home and from the moment that she left the hospital with Jon, there was obvious excitement. When I met them at the front door, she was bouncing in her stroller, eager to get out and explore her new surroundings.  The giggling and smiling was constant as Mae showed Phoebe around her new "house".  Wonderful memories were made. 

After a night of sleeping under the same roof. We were back at the hospital today, Phoebe needed platelets and an antibiotic.  She will be out patient with very regular hospital visits, for as long as she is without a fever and doing well.  We are hoping that these wonderful days and nights together last as long as possible.

While it is wonderful having Phoebe home, it is very busy. Taking care of Phoebe while she is out patient is like having two full time jobs.  She has regular and multiple daily appointments and she doesn't travel lightly.  Phoebe is on 11 different medications right now.  Each of which is administered by Jon or I at home or on the road.  There are antibiotics, antifungals, drugs for nausea, reflux, blood thinners, and a few others.  This combined with rinses for her mouth to prevent sores, the daily maintenance of her central line and frequent dressing changes, at times it's difficult to keep it all straight.  I am thankful that Jon and I are here together, that we can share these daily and sometimes daunting tasks, and that now we can also talk, face to face, about all that is going on.

The plan right now, is for Phoebe to be seen regularly at the hospital.  On top of her many medications that she will get at home, for the next week she will also get an injection of interleukin 2 in the hospital.  This is something that we all have in our bodies, but giving Phoebe more will help to feed the NK cells, to allow them to thrive within her little body for as long as possible, so that they can best target and kill the Leukemia cells.  We like to think of it as the food that will feed the troops and make them stronger.  As always, we are taking things one day at a time, this protocol is still considered experimental, and so we are hoping and our doctors are hoping that it will do what it has done for many others like Phoebe and bring about a stronger remission. 

Friday, October 21, 2011

Natural Killers

Yesterday, my natural killer cells were harvested.  The procedure took about 3 and a half hours - my blood was taken out, it was put through a machine and the NK cells removed, and the remaining blood put back in through an IV.  Today, Phoebe will receive an infusion of my cells.  NK cells are a type of white blood cell that are known to fight and kill viruses, and research here at St. Jude shows that they also target, attack, and kill cancer cells.  We are very excited by the possibilites that these little cells possess.

Phoebe continues to amaze me. Despite five days of really intense chemotherapy, she is playing like she has never played before.  Pulling herself up to her activity table, stacking blocks, standing on her own, using crayons, and making new sounds everyday.  She is so full of joy, it is impossible to look at her without smiling.  She lights up her room and everyone in it.  Her big sister Mae, is equally full of light, joy and smiles, and is on a first name basis with many people here at the hospital.  We recently moved to the long term housing, a great place that has been donated by Target Stores. Mae was quick to ask the person who showed us to our "house" if there was a crib for Phoebe.  She wants to make sure that when Phoebe comes home, there is somewhere for her to sleep.  Very important detail.  And to little Mae, a crib makes a homecoming a reality.

About Phoebe coming "home", or to our home away from home.  There has been talk of sending her out-patient as early as tomorrow if all goes well with the NK cell infusion.  A Memphis family reunion is on the horizon and we are so excited. 

Miss Phoebe playing peek a boo with her sock :)

Tuesday, October 18, 2011

Almost there ...

Phoebe is doing well.  Today will be her second last treatment of chemotherapy and she has had few side effects. She is nauseous and losing her hair, but those things are to be expected.  Lately, since Phoebe is doing relatively well with the chemotherapy, the focus seems to be on helping her to better develop her skills.  We have had many visits from many different therapists - physical therapists, occupational therapists, speech therapists, all coming to work with Phoebe to help her to improve her skills.  Phoebe is a very busy girl.  She is also not sure about most of them, and she likes to give each new person a hard time, so their visits usually involve some crying and shouting, some pushing hands away, but if they keep their distance, there is a lot of smiling and laughing.  She trusts Jon, Mae and I, but everyone else - as long as they stay back 4 feet, she is happy.  We are working on breaking this "force field" - as our nurses at Sick Kids used to call it, but like any relationship it will take some time.  For now, Phoebe is working hard.  Everyday brings with it some progress.  She is babbling, and making new sounds and words, and her little legs, despite all of their bruises from twice daily injections, are getting stronger and starting to hold her up. 

Mae and Phoebe have had daily visits in the fish bowl, and even though their contact is limited, their connection is strong and each little face lights up at the sight of the other.  We are looking forward to the day, hopefully soon, that Phoebe will be out patient and free to play with her big sister.

As for me, I am preparing to donate my natural killer cells to Phoebe.  I have had check ups, x-rays and blood tests to ensure that I am in good health and so far everthing is set for Thursday.  The procedure is fairly simple, but long.  Both of my arms will be hooked up to an IV for 4 hours, my blood will be taken out, the natural killer cells removed, and the remaining blood put back.  I have been giving my cells nightly pep talks to prepare them for what will likely be the fight of their life.  They have a tough opponent in Phoebe's Leukemia, but I have a feeling that they will do me proud.


Saturday, October 15, 2011

Sister love

Last night Phoebe moved back to the bone marrow transplant unit, back to the fish bowl and the isolation.  We had dinner together before the move and Mae and Phoebe happily played and giggled.  I have been trying to prepare Mae for this move, and for the time that she will be apart from her sister.  It's hard but I think that she understands what is coming.  Her hugs for Phoebe were a little tighter, her touch a bit more gentle, and the time spent more attentive.  Mae, who rarely sits downs, was happy to sit with Phoebe on the couch, asking me to put Phoebe beside her so they "could cuddle".  And Phoebe was beyond happy to be sitting with her big sister.  Sister love and bonding was at its best in Phoebe's room last night.  This love between Phoebe and Mae and between siblings, is no match for the fish bowl, it will not be weakened by isolation and separation, it is a love unlike any other. 

And now today - today we are back in the beautiful and colourful bone marrow transplant ward.  Phoebe is back in her room with the big screen TV and we are back to long, lonely days of isolation. Phoebe can leave her room for walks, or to visit the playroom, but she can't leave the ward.  We spend our days playing, reading books, watching Baby Einstein, singing songs and doing what we would probably be doing if we were confined to our home for a day. With the exception of chemotherapy, antibiotics, and the sometimes constant stream of nurse and doctor visits.  Today, three different chemotherapies, with possible side effects ranging from nausea and vomiting to difficulties with the heart, liver and kidneys, were infused back to back through Phoebe's central line.  While all of this was going on, Phoebe sat up in her bed, hooked up to the monitor to measure her heartrate, oxygen levels, and blood pressure and played.  She bopped to the music of her Baby Einstein video, and played. She also talked to some friends and family on Skype.  We are very thankful for Skype. 

We are hopeful that the next four days of chemo are as uneventful as today's, and that Phoebe continues to do as well and be as happy and joyful as she is today.  And we are counting down the days until the next family reunion.

Thursday, October 13, 2011

The fine details

I learned a lot today.  We had a meeting with one of Phoebe's doctors to discuss treatment.  It was informative, overwhelming, encouraging, and very interesting to say the least.  Phoebe's type of Leukemia is rare and difficult to treat, this we know.  There is a genetic component to it that is complicated and I don't think I will ever completely understand what it means or how it came to be.  It is called the multi-lineage Leukemia (MLL) gene, and  is often found in infant Leukemia and one of the reasons why it is so difficult to treat.  The cytogenetics testing that looked at Phoebe's bone marorw sample, found this MLL gene rearrangement in 3 % of the cells.  This news means that Phoebe definitely has evidence of disease and so she is eligible for the natural killer cell therapy.  It also reminds us once again, of just how stubborn and nasty Phoebe's Leukemia really is.   

Usually, a bone marrow aspiration is done when the blood counts have recovered because this way, there is more to see and test.  In Phoebe's case, her bone marrow aspiration was done early, so although they found zero Leukemia cells, they were looking at a very small sample.  Our doctor today said that yes, Phoebe is technically in morphological remission, but this finding was done from an unreliable sample - meaning that if they were to wait longer for the bone marrow to recover they may have found more cells.  Or perhaps they wouldn't have found more cells, we will never know because we are moving forward with treatment.  The plan is for Phoebe to have 5 days of three different types of chemotherapy, followed by an infusion of my natural killer cells, and the hope is that this will put Phoebe's cancer into a remission that will be deep enough to go to transplant.  Considering that when we started treatment after Phoebe's relapse, there was 90% Leukemia cells in her bone marrow, the fact that it is now down under 5% is still wonderful, and we are making great strides in the right direction. 

I talk a lot, and I ask a lot of questions.  Today, though, I thought to myself - maybe it's better not to know? Before this meeting, I was blissfully unaware.  I heard the good R word - remission, and I went with it.  I didn't think about all of the fine details, the many things that make Phoebe's cancer and everything about treating it complicated. Nevertheless, my many questions brought a lot of answers.  I learned that the NK cell therapy although it is experimental, has been used in treatment at St. Jude since the early 90's with great success. And that in the lab it has been seen to be effective in targetting cells specific to infant Leukemia.  That when combined with immune system suppressing chemotherapy, the NK cells attack Leukemia cells.  That they do this without the toxicity and many side effects that come with chemotherapy.  Many very good things that I would not have known if I remained in my bubble, blissfully unaware.  So, I will still be blissful because we are here, we have this second chance, Phoebe and Mae are bonding and happy, and we are moving forward and towards the cure, but I will continue to be aware.  Or as aware as possible.  

Tuesday, October 11, 2011

Reunion and Remission

The long wait is over.  The results of Phoebe's bone marrow aspiration and biopsy are in.  When viewed under a microscope, zero leukemia cells were seen.  Zero. This means that morphologically, Phoebe is in remission. To be in morphological remission means that there are less than 5% cancerous cells in the bone marrow, anything fewer can not be seen under a microscope, so the sample needs to be sent for further testing in order to determine minimal residual disease - basically how much, if any cells are still there. This is wonderful news, a great big step in the right direction and another obstacle that Phoebe has overcome.

The plan for the Natural Killer cell treatment can only be done if Phoebe has some remaining Leukemia cells, so the results of the MRD and other cytogenetics testing will very much determine the path that we take.  The doctors think that because Phoebe's cancer is known to be very aggressive, to have the NK cell treatment in addition to another transplant would be best as it would be one more way of  fighting the cancer.  It seems strange, but they are hoping that Phoebe has some remaining cells.  Even if Phoebe has a fraction of a Leukemia cell, it would still be enough to divide and multiply, and so that would warrant the NK cell therapy. 

In the meantime, we are waiting and seeing, but also celebrating.  We have come so far.  Phoebe has once again defied the odds and proven that anything is possible.  When we embarked on this part of our journey, when we decided to do everything possible to try to get Phoebe's cancer back in to remission, we were cautioned by many doctors.  We were told that it would be difficult, that it might not be possible, that we should just accept this as our fate and bring Phoebe home.  We decided that to bring Phoebe home, to choose to keep her comfortable instead of try again, to give up, was not a reality that we were willing or able to face.  Phoebe is here, she is fighting so hard for the chance at a life and as long as this is true, we will never give up.

Tonight in Madrid, Spain, a concert is being held in Phoebe's honour.  People are joining together to dance, listen to great music, and to celebrate Phoebe.  I know that Phoebe can feel the wonderful energy and good and positive vibes coming to her from across the ocean and we feel so fortunate to be surrounded by the love and support of so many wonderful people.  Thank-you Madrid!

And to top off this wonderful week, Phoebe decided to wear her mask so she was able to leave her room to explore the playroom.  And .... 

she has happily been reunited with her big sister.

Saturday, October 8, 2011

The Fish Bowl

It is our fourth day at St. Jude and all is going well.  We had a busy first few days here, Phoebe's PICC line wasn't working well so they decided to remove it and put in a central venous line.  While she was sedated they also did a bone marrow aspiration and biopsy, so that they can get a better idea of what is going on in Phoebe's little body and to determine how much (if any) Leukemia cells are still there.  We will know the results of that on Monday. 

The doctors here have told us that they are not expecting Phoebe to be in a deep remission, and so we are taking steps to start an innovative treatment using natural killer cells, harvested from me and transfused into Phoebe following about 5 days of chemotherapy.  Natural Killer cells are a type of white blood cell, that have been found to be very effective in killing Leukemia cells and they are unlike anything that we have tried. The doctors say that this treatment should bring about a stronger remission, and the stronger and deeper a remission the better.  Following that, our hope is for Phoebe to have a transplant possibly also using my stem cells, but right now we are just taking things one day, and one treatment at a time. 

 Although she is doing well, Phoebe has seemed quite sad and depressed since we arrived, and we think that she is missing her big sister.  Siblings under 7 years old are not allowed on the transplant unit, and the best way to see each other is in an area they call the "fish bowl" - the siblings can look at each other through glass.  Mae and Phoebe spent some time making each other giggle through the glass, but it was obvious that it was not the meeting they were longing for.  We decided to see if the doctors would allow Phoebe out so that her and Mae could spend some time together.  Phoebe won't start her treatment until the 14th, so she is not technically a transplant patient, yet.  The solution was to move Phoebe to the oncology floor until she starts treatment, where siblings are able to visit.  They have yet to be reunited as Mae has a bit of a runny nose, but I am looking forward to seeing Phoebe's face when they do.  I know that it will light up with the love that she has for her sister, and I know that the feeling and the light will be mutual.  Mae told me yesterday, that "Phoebe wants her big sister back".  And she is right.

Thursday, October 6, 2011

Here, happy and full of hope

Perhaps it was the very hard and serious customs officer that softened when he saw Phoebe, who shared a story with us of a friend's child who had been to St. Jude,  let Mae stamp her own passport and lingered as he wished us good luck on our journey.  The warm welcome and cheerful hello we received upon entering Mempis and St.Jude.  The triage nurse who greeted us like a ray of sunshine in a bright tye die t-shirt and got a huge and running hug from Mae - the kind of hug that is usually only reserved for very special people, or the lovely and very gentle male nurse's aid who did what I was beginning to think was impossible for someone other than Jon or I , and sucessfully rocked and soothed Phoebe back to sleep in the wee hours of the morning while I watched, speechless and amazed.  Or maybe it was the beautiful stories of hope that we heard from fellow parents.  Or that all of these things combined have made for an unforgettable and encouraging first day in Memphis. 

We are here and happy and completely amazed and overwhelmed.  What we have seen of the hospital so far exceeds my expectations.  The campus is beautiful, and inside the building there is an energy and a feeling that is impossible to describe.  On the walls throughout the hospital is art work done by former patients.  Beautiful art work that celebrates the life that has created it.  This includes an artful alphabet, letters carefully printed by small hands with words that mean something to the little people who wrote them.  Things like "v is for vomet", or" j is for joy - joyful moments when you laugh so hard your tummy hurts".  Or one that I found especially heartbreaking and beautiful "c is for cancer - cancer makes you need to prove to the world that you are strong enough to beat it".  Beautiful words and artwork created by amazing and very strong children. 

It is what i saw on the wall while getting a tour of the bone marrow transplant unit, that best captures how I feel and the energy that St. Jude exudes.  As we were being shown around the bright and colourful ward that Phoebe will call home for the next little while:  the kitchen,  play room, family lounge and laundry facilities (yes there is laundry) on the unit, another beautiful piece of art caught my eye.  Encased in a very large glass frame were row upon row of tiny and colourful paper cranes - a thousand to be precise.  It took my breath away and I stopped to admire it.  We learned that the cranes were made for a boy by his classmates while he was undergoing his fourth bone marrow transplant.  His fourth.  Our nurse explained that this particular boy is now miraculously at home and thriving.  His parents donated the cranes to serve as a symbol of hope for other families walking similar paths.  The nurse told his story, and then said simply "we don't give up, and he is one of the reaons why".  Amazing.  Incredible, and a wonderful source of hope. 

Phoebe is settling in well.  She loved the flight and happily munched on some snacks, slept and cuddled the entire way.  She seemed very excited to be out of the hospital and on the taxi ride to the airport was giggling and playing peek a boo with Mae.  Her room at St. Jude is quite fabulous and almost hard to believe.  It is about the size of a double room at CHEO, but it is all for her.  It comes complete with a big screen tv, large and almost spa like bathroom for her, and another bathroom for Jon and I, a parent room with a pull out couch, comfy chairs and another tv, and a wonderful lazy boy for rocking her back to sleep.  We are in hospital heaven.  The communal kitchen is stocked with a wide variety of snacks and cookies that Phoebe has already sampled and enjoyed.  

Our first day has been exciting, overwhelming and incredibly emotional.  To think that this place, this city that is very new to us, will be our home for the next many months is hard to believe.  We are looking forward to meeting Phoebe's doctors tomorrow and to learning exactly what the plan is, but for now we are marvelling in all of the good things - that we are finally here in this place that is overflowing with hope and love and faith, where Phoebe can get the care and treatment that she needs, treatment that will eventually and hopefully allow her to be back home where she belongs.

Monday, October 3, 2011

All our bags are packed ...

Phoebe's temperature is coming down.  Over the weekend, as time passed, her fevers became less frequent and her mood improved.  She still has about one fever a day, but appears to be feeling better. We learned that the particular type of bacteria that was found in her blood, is also inside her PICC line, but that it is not the type that typically sticks to lines, and so as long as things improve, the line can stay.  This is line number 5 for Phoebe, and so if we can save her from the stress, infection risk, and sedation that would come with getting number 6, at least right now, we would like to do so. 
All in all, we had a good weekend.  Despite the uncertaintly of our trip to Memphis, we continued with our packing and preparations. This was a good thing, because  after speaking with our doctors this morning, we learned that many people are working to get Phoebe to St. Jude on schedule.  The details of how we will get there have yet to be completely worked out, but we are hopeful that it will still happen on Wednesday.

Today my cup of thanks was once again overflowing.  I have been spending a lot of time looking back over the past year of hospital life, and marvelling at everything that Phoebe has accomplished.  Over the past few days, despite an infection in her blood, and the fact that she probably feels very far from what most people would consider good, she has still been doing her thing.  Developing and learning new things everyday.  She amazes me.  It has been 9 weeks since Phoebe's relapse, since what was quite possibly the worst day of my life, and in that relatively short time, we have come so far.  I have come to realize that this time that we have had, may not have been were it not for some very special doctors.  Doctors who despite all of the odds that are and have always been stacked against Phoebe, agreed to try  - to give Phoebe one more chance.  To them,  I am eternally grateful.   Although our road ahead and the future is full of uncertainties and likely some very difficult days, we are still moving forward, and our goal has never changed.  We want and believe in a cure. 

As this chapter of Phoebe's story is coming to an end, I would like to take a moment to thank The Hospital for Sick Children, or "Sick Kids" as it has come to be known.  While we were here for treatment, we witnessed the work of some very incredible people.  Their work, the difference that they make, the lives that they change, proves that it just takes one.  Wonderful and life changing things are happening here.  Work and research is ongoing, and the folks at Sick Kids are determined to advance the cure, to help Phoebe and those like her.  The determination and optimism of our doctors has opened doors for Phoebe that wouldn't have been open otherwise.   Phoebe's primary oncologist said it wonderfully today - he said that it is to help people like Phoebe, with the belief that a difference can be made, that gets him out of bed everyday.  And we are so grateful that  he does.

Saturday, October 1, 2011

Another fever

Over the past year, Phoebe has had more fevers than I can count.  With each fever,  her blood was sent away to be tested for any signs of bacteria and infection, and each time, countless times, it came back negative.  Not this time.  No, this time, five days before we are expected to leave for St. Jude, Phoebe's blood cultures have come back positive for bacteria.  This means that she has a bacterial infection in her blood.  Because the doctors now know what is causing the fevers, they are once again adjusting antibiotics in order to treat the specific type of bacteria that has been found. They know how to treat it, which is good, we just have to wait and hope that the antibiotics work their magic. 

What we don't know is how this will affect our journey to Memphis, and we probably won't have any answers to that question until Monday.  When Phoebe spiked a fever on Friday, we were told that as long as she is well and her cultures come back negative, she will still go even if she is on antibiotics.  Despite all that is going on in side of her, Phoebe, as usual, looks good.  She is smiling and loves her playtime.  This morning as I was taking out her mat, she started to laugh and pull herself up in her bed, to try and get a closer look, or maybe she was trying to get out, either way she was very eager to start playing.  

We are taking things one day at at time, and hopeful that this obstacle won't affect our trip to St. Jude.  Everything that is within our control, is under control - our flights are booked, our bags are slowly being packed, and we are preparing ourselves and Mae for the move.  Mae continues to tell everyone and anyone that she meets that she is "going to Memphis!" - and I think this time I am going to follow her lead.  As long as we keep believing, it will be.