Hope

Where to start ... today we had another visit to CHEO's medical day unit.  These visits are becoming part of our routine; we get there early in the morning, have Phoebe's blood tested, talk to the doctors, and then we are off on our way back home to enjoy the day.  Today, was unfortunately anything but routine.  Phoebe had her blood tested, and the results showed some abnormalities.  Her white blood cell count is 26 which is high and not a great sign.  Our doctors are very concerned that it may be her cancer returning and are running more tests.  They are also stopping the drug that suppresses her immune system, in the hopes that her new cells will fight off any left over bad ones.

We are scared and worried, but we are also very hopeful. We have hope and love in abundance and we believe with all that we are that Phoebe will be okay.  There are elements of Phoebe's blood work that the doctors can't explain and that gives us even more hope.  Phoebe's platelets and hemoglobin have also climbed, which is a great sign and not something that would be seen if her cancer had returned.  She is also doing really well.  She is thriving actually.  Growing, babbling, saying new words, trying to crawl and eating.  She is finally eating.  She actually yells at us when the spoon holding the avocado is given too slowly.  She is feisty and strong, and she will make it over this obstacle too. 

Many times throughout this journey, Phoebe has defied the odds, proven her doctors wrong, and accomplished what some have thought to be impossible.  This is no different.  Like I told Phoebe's doctor today, although I recognize the severity of the situation, I know that everything will be okay.  That somehow, someway, this is just another one of Phoebe's many hurdles on her road to complete recovery.

So, now we wait. Wait for more test results, for more blood work and for signs of Graft Versus Host Disease.  Phoebe will have her blood tested again on Sunday and Tuesday, and the results of her previous tests should be available next week.  In the meantime, I will continue to focus on wonderful and very brave Phoebe Rose, because I know that doing this will help me to climb this mountain with her.  Seeing her smile, grow and thrive fills me with incredible hope and strength.  And as usual, in her own way, Phoebe is reassuring me that everything will be okay.

UP

Phoebe had another visit to the medical day unit at CHEO yesterday.  She has two appointments per week to test her blood and make sure that everything is still on track.  I am happy to report that her blood counts have jumped up a bit.  Her white count is a whopping 5.9 - still low for the average person, but fabulous for Phoebe.  Her hemoglobin climbed a few counts to 86 and her platelets jumped from 80 to 98.  Go Phoebe go!  It is so wonderful to see her counts moving in the right direction as whenever they drop, even if it is just a bit, we worry.

Phoebe is still making wonderful progress at home, and catching up on lost time.  Today she learned to move from her tummy to a sitting position, and is even rocking back and forth a bit while she is on all fours.  She looks almost ready to crawl and seems to get stronger everyday.   Getting her to eat and drink is still a challenge and we think she will need her feeding tube for many more months.  She is making progress but it is slow as in addition to getting used to eating again she is needing to develop new skills to help her to do this.  She won't drink from a bottle anymore, so she is learning to drink from a cup.  She really likes avocado and has started to get excited when she sees me start to cut one up for her.  This is a wonderful sign as in the past she would cry whenever we would try to feed her.


Mae is still loving being back home and is great with Phoebe.  She likes to help us put Phoebe to bed, and often stands beside her crib singing a very special rendition of "Twinkle, twinkle little star".  There has been no talk of the "city house" since our homecoming, but whenever Jon or I leave to take Phoebe to CHEO, Mae makes sure to tell us "not to go far away". 

There's no place like home ...

Almost an entire week at home.  We are settling in nicely, and enjoying this precious time together.  Mae has been having a lot of fun in her new backyard, and Phoebe is making more progress as each day passes.  She has now mastered going from sitting up to her tummy, and  today she wiggled her way backwards on the carpet in search of her beloved soother.  She has tasted various milkshake and smoothie concoctions, and although she will only take a few sips at at time, it is wonderful progress.  Thicker liquids seems to be more comfortable for her to swallow, so we will continue to try and find things that she likes. 

Phoebe is adjusting to the heat, thanks to a central air conditioning unit that was installed earlier this week.  Her concerned Grandpa called in a favour in the middle of this very long and intense heat wave, and although i'm sure it is the busiest time of the year for those in the business of bringing people like us cool relief, our wonderful AC arrived and was installed within hours of the phone call for help.  Once again, we were reminded that the world is full of some very, very lovely people.

We have had two visits to the medical day unit at CHEO.  Each time we were quickly ushered into an isolation room, the door firmly closed, and Phoebe's blood was drawn and tested.  Her counts have dropped a bit, which is always stressful, but we are hoping that it is related to the intrathecal chemo that she received last week and that her counts will start to climb up again soon.  The doctors say that it is very rare and unlikely for chemo given in the spine to affect the peripheral blood, but Phoebe's counts have now dropped shortly after both rounds of intrathecal chemo that she has received post transplant.  There is very little data about infant Leukemia, and not a lot is known about the effects of intrathecal chemo post transplant.  So much so, that each hospital seems to do things differently.  Phoebe will receive 6 lumbar punctures with chemotherapy post transplant, but other infants might have radiation instead, or more, less, or no lumbar punctures.  Each case and each infant is very different, but it also seems to depend on the doctor who is making the decisions.  In any case, we have learned that nothing is too rare or unlikely for Phoebe and so we are hoping that this is the cause of the drop in counts, or that it is simply what Phoebe's new bone marrow is doing right now.  One of the chemotherapies that Phoebe receives in her spine, methotrexate, has always given us problems.  She is very sensitive to it, and even in tiny doses it has given her mouth sores and nausea.  She has one mouth sore that we can see right now and as for the drop in counts, I blame methotrexate.

We are returning to the clinic on Monday to test Phoebe's blood again, and we are hoping for more of the steadily climbing blood counts that we have been happily getting used to.  As for Phoebe, the stress is not getting her down.  Tonight after a short cat nap, she woke up with a big smile, ready to play.  She happily munched on an arrowroot cookie, looking very proud of herself for doing so, and babbled and bopped until she was ready to settle down for the night.  I like to think she was telling me not to worry.

She is now cool and comfortable and sleeping peacefully in her own little bed.

Welcome home Phoebe and Mae

We are finally home.  I don't know if I have ever been as excited about anything as I was about coming home.  After stopping by Sick Kids to say good bye to the wonderful staff on 8B, we headed east. The 5 hour drive from Toronto felt like an eternity, driving down the 401 in the hot afternoon sun, Mae and Phoebe squashed into the backseat of our very small car, and Mae asking about every 10 minutes if we are there yet.  We finally pulled into our driveway, which had a beautiful welcome home message written in chalk by Phoebe's cousins, and we were met by their smiling faces.  The excitement proved to be contagious as it was giggles and smiles all around for the duration of the welcome.  We had been telling Mae throughout the drive about a "special surprise" that would waiting for her at home.  Now affectionately named "Mae and Phoebe's Park" - a play structure in the backyard was another source of smiles and enjoyment for Mae.  She woke up bright and early this morning, and asked if she could go out to see the park in her backyard.  So wonderful to be home. 

After discovering the play structure, we ventured inside the house.  Many people have been hard at work, getting our house ready for Phoebe's homecoming.  Because Phoebe's immune system is still weak and will take many, many months to fully recover, our house has to be clean, dry and safe for her to come home to.  We are so very thankful to everyone who helped to make this possible for us. Flowers were planted, the garden was weeded, the roof was fixed, floors and windows cleaned, trim and cupboards painted, everything dusted, organized, and sanitized. The house sparkled from top to bottom, and downstairs, our basement renovation was more wonderful than we could have ever imagined.  A beautiful, dry and safe space for Phoebe and Mae to play in.  Mae was so excited to be back in her house that she immediately went in search of her babies and her many stuffed toys.  Thanking her cousin Olivia for looking after them while she was away, together and inseparable they both wrapped  them in blankets and put them to bed throughout the house.  Later in the evening Mae refused to go to bed before she checked on all of her various babies and stuffed animals to make sure that they were properly blanketed, fed, and settled for the night.  Needless to say, she was pretty late getting to bed. 

Phoebe was also happy to home, but took a little while to adjust to the heat.  We don't have air conditioning and the house was a bit hot.  Phoebe's Uncle whipped up some delicious and refreshing strawberry milkshakes, and to our surprise, Phoebe pulled the glass to her mouth and started to try to drink.  Because she doesn't have very much experience drinking from a cup,  this involved her dipping her tongue into the shake, and eager to drink some more, she started trying to bite the cup.  Although Phoebe has been making progress eating solids, this is one of the first times that she didn't forcibly push the cup away from her face when we presented her with something to drink.  We have tried pretty much every thing, except of course, a strawberry shake.

Today, with one day home under our belts, the smiles are still frequent and contagious.  Tonight Phoebe experienced her very first thunder storm.  We sat in the shelter of the porch and watched as the storm grew strength.  She  loved it and kicked her legs and squealed in delight at the sound of the thunder and the sensation of the cool, wet breeze on her face.

We are so happy to be home and look forward to experiencing many more firsts with Phoebe and Mae.  And now that we know that Phoebe likes milkshakes, the possibilities are endless.  Many nutritious and delicious foods can be whipped into a shake.

Two more sleeps ...

Phoebe and I took another trip to the clinic today.  She had her blood tested and the dressing on her PICC line changed.  She cried a lot while she was in the hospital and was very happy to be back outside and heading home to her city house when the visit was over.  

The results of her blood work looks great.  Her platelets made another jump and are now a whopping 126, her hemoglobin also climbed a bit and is now 111.  Her white blood count is still holding steady and is 4.6.  It is such a relief to see her counts moving in the right direction. 

In other Phoebe news, she has expanded her vocabulary to now include "Mama" and something that closely resembles "Mae".  Upon hearing Phoebe say her name, Mae jumped around the room shouting Mae! Mae! Mae! and I think Phoebe may be afraid to say it again.  She is making more progress with her eating, avocados are still a favourite, but she has also tried and enjoyed watermelon, canteloupe, and various baby type purees.  She is yet to drink very much, if anything at all by mouth, but she will now let us put the cup to her mouth so I figure it is only a matter of time before she drinks from it.  She has also had many more opportunities to practice tummy time and yesterday she rolled over!  She has rolled in the past, she actually learned to roll over quite early, but after doing it a few times she was finished with it.  During transplant, Phoebe's developmental milestones were basically put on hold.  Worrying about whether or not she would crawl took a back seat to worrying about her health and survival.  Apart from social interaction with her many new friends, she did not do anything new and some skills regressed.  It is wonderful to now see her starting to catch up again and eager to try new things.  It won't be long before she is running to catch up with her big sister.

One more clinic visit, a lumbar puncture and two more sleeps before we say good-bye to Sick Kids and the big city, and it can't come soon enough.

Four more sleeps

I'm sitting with Phoebe at the day hospital at Sick Kids, watching her nap in her stroller.  There is a crib in the room, but each time I try to put her in it, she cries.  She also began to cry as soon as we reached the 8th floor and started to make our way to the clinic.  Too many bad memories, and like her big sister Mae she seems afraid that her new life, the one with all of us together at home, might be snatched away from her.

Luckily for us, the doctors have agreed to let us head home on Saturday.  Phoebe will have 2 more visits to Sick Kids, one on Thursday to test her blood, and again on Friday for her 2nd of 6 lumbar punctures with intrathecal chemo.  Today her blood work looked great, her platelets have finally started to come up on their own and are 103 today, and her hemoglobin and white blood cell count are still holding strong. 

Phoebe is loving her time at her temporary home.  She loves watching her big sister, and she will often follow her with her eyes, craning her neck to look as Mae jumps and runs around the room.  Since she has been home she has also made some progress in her eating.  She will now eat some solid foods, her favourite being avocados and arrowroot cookies.  She is still not really drinking anything at all, but we are encouraged by the progress she has made so far, and we know she can do it.  It will just take some time, like everything else. 

For now, we are enjoying our time at home together and we can't wait to pack up the car and head towards the 401 - back to Ottawa and all of the comforts of home.  Four more sleeps. 

Out Patient

Phoebe has  been at home with us in Toronto for the past 3 days and it is so wonderful.  Following her first night at home we had a visit from community nursing, to assess Phoebe and care for her PICC line.  Mae overheard me tell Jon that the nurses were coming, and she got very upset.  In a panic, she told me that "Phoebe is all better, she doesn't have to go back to the hospital" and then, as she continued to become even more upset, she pleaded with us to "please don't bring Phoebe back to the hospital, she's all better".  It broke my heart to see her so upset and worried, and I eventually convinced her that the nurses were visiting only because Phoebe wasn't going to be going to the hospital.

Mae is two and a half and incredibly resilient.  We have picked up and moved her to a new city, her sister has been living apart from her for almost a year, and she has seen her parents together a handful of times in the past 9 months.  Today I realized that despite how happy and joyful she is, all of this has had a real effect on her also.  She was so scared and worried that the life that she had just gotten back, her life with her baby sister and both parents, was going to be taken away from her again.

Yesterday I took Phoebe to the out patient clinic at Sick Kids.  She had her blood tested and her platelets climbed up a few counts so no transfusions were needed.  It has now been 9 days without a blood transfusion which is a wonderful sign that Phoebe's new cells are continuing to work their magic.  The out patient clinic, or the Sears Cancer Clinic, is a huge completely renovated clinic and is unlike anything I have ever seen.  It reminded me of the waiting area at the airport.  It is a huge and bright open space with tables and chairs, but unlike the airport it has toys, computers, flat screen TV's and many, many children with Cancer.  Above the reception area there is a sign that directs children who are there for "express chemo", almost as if the children are figures on an assembly line, waiting to receive their chemo and have their blood tested.  It is very efficient as the clinic will see approximately 120 kids a day, but also unbelievable.  It is a different world, and one that I don't think many people are aware exists.  When we were at CHEO it seemed that when one family was sent home, another child, newly diagnosed, occupied their room.  Beautiful and incredibly brave children fighting terrible cancers while also just being kids.  Laughing, playing hockey in the hallways, and riding tricyles around the ward. 

In a perfect world, no child should have to spend years of their life in hospital, but as it would seem, the world is not perfect.  Instead, I hope that a cause and a cure is found, that the number of children diagnosed with cancer each year begins to decrease and that more funds are directed to life saving pediatric and infant Cancer research.  Seems like ambitious hopes but look how far we have come. 

286 days later

Phoebe's big city vacation starts today.  She was discharged and will now be seen a few times a week at the day hospital at Sick Kids.  Her platelets are 75 today, which is still low for the average person, but higher than the 50 that the doctors like to keep them above.  She is holding on to her few platelets much better and requiring a transfusion about once every three days now.  As for her other blood counts, her red blood cell count has been holding strong in and around 90 which is also low for the average person but great for Phoebe.  No transfusions there either and the hope is that as her body starts to recover and heal, her blood counts will all climb up to within normal range.  Because Phoebe is stable and not requiring daily transfusions, she is able to come home, or the next best thing; her temporary house in Toronto, as a final step before heading home to Ottawa.

The doctors are very cautious with Phoebe because she has had many complications, but also because her particular form of Leukemia is so very aggressive.  They will monitor her for most of her life, and she will be watched especially closely for the next few years.  During our transplant consultation we were told that once we pass the three year mark we are on safer ground, and when 5 years pass after diagnosis, Phoebe will be considered cured and cancer free. 

I just returned from the pharmacy where I picked up a box full of drugs.  Medications for nausea, reflux, blood clots, GVHD, and high blood pressure.  Jon and I were taught how to administer these many medications, including Phoebe's two daily injections, and we have also learned how to take Phoebe's blood pressure.  It is amazing what has become "normal" and what we have gotten used to.  Nine months ago, I found it difficult to keep all of Phoebe's medications straight, and the thought of their side effects was incredibly overwhelming.  Today we are just so happy to have our baby home and we are amazed at the thought of just how far she has come.

Phoebe has spent 286 days in hospital.  She has had 3 central lines, and two PICC lines, countless NG tubes, blood transfusions, lumbar punctures, bone marrow aspirations, pokes and prods.  She has had her blood pressure measured daily, sometimes 12 times a day.  She has survived many life threatening complications and side effects from her life saving treatment.  And through it all, she has grown, laughed, smiled, babbled, and met many very brave friends along the way.   She has changed the way that I look at the world and taught me, among many, many other things to appreciate each day.  We are aware that Phoebe's life may be different and that we are not technically out of the woods yet, but we are so relieved that she is here and we are amazed every day by how hard she has fought and how far she has come.  And more than anything we are just so happy to have her back home with her big sister, where she belongs. 

A day out and a first word

Phoebe has now been in her little room on 8B at Sick Kids for 60 days.  She has had a lot of interaction with her many different doctors and nurses, but for the most part it has been a very quiet 2 months.  I have noticed that she has also been quieter than usual which I think is to be expected as despite all that we try to do to stimulate her and to make her environment interesting, it is a very small and very white room and Phoebe was very ill for many of the past 60 days.

We have a lot of catching up to do and what better way to start than with a day pass. Today Phoebe had a whole day in the big city with her big sister, Jon and I.  Mae and I walked to Sick Kids just after lunch and found Phoebe there waiting for us with a big smile on her face.  We got into the car, strapped Phoebe into her seat and her big smile got even bigger.  I think she knew that it was going to be a good and different day.  Mae and Phoebe held hands across the seat while we drove around and searched for a quiet park.  It was a hot day today so we didn't stay very long outside.  I think the heat was a bit much for Phoebe, she has been in an air conditioned room with fans blowing from every angle for the past 60 days.  She was a bit fussy while we were outside, but calmed down once she got back in the car and the warm summer breeze started to blow in through the windows.

Later in the day we went back to what Mae calls the "city house" and Mae was so excited to show her baby sister her room and all of her toys and books.  Phoebe was very excited to be with Mae and every time Mae went to give her a hug she smiled another one of her huge smiles.  Then after dinner, Phoebe went back to the hospital with her daddy and as if the day wasn't perfect and wonderful enough, once they got back into Phoebe's little room, Phoebe said her first word.  "Dada".  And then she said it again and again ...