5 weeks to cake.

Phoebe's feeding tube came out on Monday, and although it was out for 36 hours and Phoebe wasn't getting fed and probably feeling hungry, she still refused to eat on her own.  She did make some progress with pureed foods, but when she was presented with the bottle, she would cry like she was being given one of her awful tasting medications, and therefore it closely resembled torture. There are a lot of factors that contribute to Phoebe not wanting to eat.  There is the fact that she has been tube fed for the past 7 months, drinking little by herself most of the time.  There are the medications that she must take by mouth, some of them tasting really disgusting, and there is the discomfort that she seems to feel while the feeding tube is in place.  All things considered, I think that learning to eat again is going to one of Phoebe's biggest challenges.  We were really hoping that without her feeding tube in, that hunger would take over and she would drink something.  But, we have learned that if Phoebe doesn't want to do something, she won't.  

We are going to focus on trying to get her to drink from a cup and to eat foods that she can pick up and feed herself.  Developementally this is what she should be starting to do, and what we seem to have the most success with.  Because of all of her mouth sores, intubation, and pain related to treatment - the bottle and most other things that approach Phoebe's mouth are met with complete refusal.  She needs to learn to eat, but also to love food and all that it will do for her.  Because she has been tube fed for so long, she doesn't understand that putting food in her mouth will help her belly to feel full and this is something that will take some time.  But, time is what we have and however long it takes is okay.

In the meantime we are thinking about switching Phoebe to a G tube, instead of the NG tube that she presently has.  The G tube goes directly in to the stomach, bypassing the nose and throat and we think that it will help to take away some of the hurdles that Phoebe faces on her path back to full feeds.  Things like acid reflux and discomfort swallowing, or the simple fact that Phoebe constantly pulls her tube and is therefore often held down so that it can be re-inserted and taped to her face.  Because nurses and Jon and I are constantly touching her face so that we can retape her tube, she has started to push hands away, even if they are touching her face in a gentle and loving way.

In one week, Phoebe will be 11 months old, and 8 and a half of these many months has been spent in hospital.  This brought a tear to my eye last night as I thought again about all that she has been through in her short life.  Then I thought about the very real possibility that Phoebe will be at home in time to celebrate her first birthday and therefore have her first taste of cake. Perhaps this will be what eventually convinces her to eat.  Delicious and not so nutritious rich chocolate cake.  After all that Phoebe has been through, she can eat as much cake as she wants and if it encourages her to try other foods, well then that is just even more wonderful.   And if it turns out that she just wants to eat cake, well that might be okay too.  I can bake brocoli and all kinds of nutritious things into cake so it's all good.  

Phoebe's bootcamp

On Saturday, a group of people joined forces at the Lebert Fitness Nation in Missisauga in honour of Phoebe Rose.  The event was a charity bootcamp, organized by the wonderful Garry McLachlan and hosted by the owner of the Lebert Fitness Nation, Marc Lebert.  Jon and Mae together with these wonderful folks worked up a sweat and kicked some serious butt on Phoebe's behalf. 

I have often said throughout this journey that the kindness of friends and strangers has been abundant and wonderful.  The love and positive energy that has been sent to us and Phoebe from old and new friends, both near and far has made the past 8 months of Phoebe's treatment that much easier.  Knowing that many are thinking and praying for us and willing Phoebe to get better has given us strength at times when being strong has seemed impossible. 

A big thank-you from Jon, Mae, Phoebe and I to Garry McLachlan and all of the hard working boot campers for thinking of us and helping to ease our journey.  We look forward to telling Phoebe about all of you and this wonderful day when she is older. 

Out and about

Good news ... the results of Phoebe's skin biopsy are also negative for any signs of Leukemia. Thankfully, the odd bruises on her head appear to be just that,  Phoebe's very unique way of bruising right now.  We are happy to be back on the road again, and yesterday we sprung Phoebe out of the hospital and took her and Mae for a walk outside.  As usual there was a lot of action in the big city, and we walked to Queens Park and around the grounds of the University of Toronto.  There was some music and dancing in the park that Phoebe happily bopped her head along to and there were a lot of smiles. After the walk we sat in the shade and ate some watermelon, Phoebe munched on a cracker, and she saw her very first dog up close!  He was on a break from his work at Sick Kids and came over to say hello.

On the walk outside we got a glimpse of what the next year will look like.  Phoebe will be at home but the places she can go and the people she can see will be restricted - no public places or people who are sick because her immune system will still be rebuilding itself and it will be a year before she receives any of her immunizations.  On our walk, we were careful to avoid crowds (which can be next to impossible on a busy Sunday in Toronto). But, because we have spent the past 8 months in hospital with Phoebe, any outside time is freeing and wonderful, and after spending the past 2 months in busy Toronto, avoiding crowds of people will be a welcomed and easy thing to do.

This morning in rounds we discussed the possibility of going home, making sure that the door to Phoebe's room was firmly closed.  Maybe I am superstitious but the last 2 times home was mentioned, Phoebe decided she needed to meet more doctors.  The doctors acknowledged that we need to be comfortable with the decision to go home and they asked us if we think there are any more steps that need to be taken towards recovery in order to make home a possibility.  Phoebe is requiring platelet transfusions only about every 2nd day now which is encouraging but she is still eating very little if anything by mouth.  Although she can go home with her feeding pump and tube, it would be nice to see her make some steps towards eating on her own.  Her NG tube seems to irritate her throat and make swallowing uncomfortable so the plan right now is to pull the tube and see what Phoebe does.  It is impossible to predict what will happen.  Maybe Phoebe will continue to eat nothing by mouth despite her hunger or maybe (hopefully) she will surprise everyone and eat.  My vote, because everything that has happened so far has been surprising, is with the latter.  In either case, we will continue to take things one day at a time.  Phoebe has made it very clear to us and her doctors that she likes to do things in her very special way, and I have a feeling that starting to eat again will be no different.

On the road again ...

Rewind to the beginning of Phoebe's journey ... following her first month of treatment and the long wait for the results of her very first bone marrow aspiration.  It was a crucial test because it would show whether or not Phoebe's cancer was in remission and if the chemotherapy was effective.  I remember sleepless nights and fear.  Just plain fear.  Especially when the preliminary results were misleading.  At the time, the doctors thought that Phoebe's Leukemia had changed type and more tests had to be done.  As usual, Phoebe had her doctors questioning what exactly was going on.

It was late in the evening, back in December when our doctor finally came to see us.  She gave us the good news and immediately following, Phoebe broke into fits of laughter.  She laughed at the doctor, and she laughed at Jon and I.  She laughed non-stop as if she could feel the tension in the room and knew we needed some comic relief.  Relief is exactly what we felt, such a wonderful sense of relief. 

Yesterday Phoebe had another bone marrow aspiration and a skin biopsy.  She also had her PICC line re-inserted.  Everything went well, the line is in, and the bone marrow and skin were sent for testing.  The results of the skin biopsy will take a bit longer, but the preliminary results of Phoebe's bone marrow aspiration show that it is free and clear of any Leukemia.  The doctors are also very happy with how Phoebe's blood work has been looking for the past 2 days that they have decided to test it just once a day.  It is amazing how quickly things can change from one day to the next.  We are so very relieved to hear the good news, but I think that the fear and the worry that  we felt yesterday and at the beginning of this very long journey will always be there.

Today is a new day and the concern now is with some graft versus host disease that Phoebe is showing on her skin.  This is to be expected because the drug that is used to prevent it was stopped on Sunday so that the graft was able to take over.  They are planning to start it again today, but to keep her dose very low because it is important for Phoebe to have the very important graft versus Leukemia effect that comes with GVHD.

This morning, to celebrate another huge step taken towards recovery, Phoebe had a visit with her big sister Mae, and together they enjoyed some baby snacks.  Mae loves Phoebe's snack foods, and Phoebe is learning.  She watched Mae crunch on her crackers, and then quickly caught on and opened her mouth to try.  There were a lot of smiles as we are all so happy that home is once again within our reach.

Every little thing gonna be all right ...

Phoebe is scheduled for surgery tomorrow at 1pm, to have her PICC line reinserted and while she is sedated, the doctors are also going to do a bone marrow aspiration and skin biopsy.  They are being very cautious and want to rule out anything that may be related to the disease, and we are anxious to close this chapter and to get back on to the path that will lead us all home.

The bruises on Phoebe's head are looking better, more like bruises than anything else and her blood counts also seem to be stabilizing.  She hasn't needed platelets today and her red blood cell count is holding strong at 90. 

Throughout this journey, in relation to some of Phoebe's issues, we have often heard the doctors say - I have never seen this before.  Phoebe as we have learned, is truly one of a kind and how she has responded to many things proves just that.  This is no different.  Just Phoebe doing things her way, and moving at her own pace.  She will not be rushed on her road to recovery.  

We will be anxiously awaiting good news tomorrow following Phoebe's many tests.  Please keep her in your thoughts and prayers and send some positive energy her way as she embarks on yet another big day.   And join us in singing Phoebe's favourite song ... "...don't worry about a thing, 'cause every little thing gonna be all right ... "

Houdini

We have had a busy weekend.  Phoebe developed some odd looking elevated bruises on her scalp this week.  There are many explanations for these bruises.  She fell and bumped her head, which she did, she has very low platelets and so is at risk for bruising, also true, and then the one explanation that no one wants to hear is that it is related to the Leukemia.  In very rare cases, Leukemia can manifest in the skin.  Phoebe has never had this condition, but because our doctors always have Cancer on their minds, something like these bruises are taken very seriously.  The plan is for Phoebe to be seen by the Dermatology team and they will decide if they need to biopsy one of the bruises and test it for Leukemia. What makes this situation frustrating is that opinions differ greatly from one doctor to another.  On Friday, our doctors were watching the bruises, talking about how well Phoebe looks and contemplating a biopsy, on the weekend, although the bruises started to look better and Phoebe was still looking good, those doctors were sounding off alarm bells. 

We are frightened, terrified actually, but still hoping for the best.  Afterall there are many other reasonable explanations for this.  And Phoebe looks good.  She is smiling and laughing and on Sunday she learned how to go from sitting up to her tummy without falling. 

To be on the safe side, our doctors have stopped Cyclosporine, the drug that prevents Graft-Versus-Host-Disease, they say that in case something is up and brewing in Phoebe's body, they want the graft to take over. They want Phoebe's new cells and her new immune system to fight hard against any left over Leukemia. 

Just in case that wasn't enough action for one weekend, late on Sunday evening, just as Phoebe was settling down to sleep,  I looked into her crib and noticed a very large pool of blood.  Her PICC line was lying beside her on the sheets.  She had somehow managed to pull it out.  When she was in the ICU, the nurses used to call her Houdini and now she is living up to her nickname. We quickly applied pressure to the wound, and it eventually stopped bleeding.  Thankfully I was awake and in the room when it happened because it could have been disasterous - an open wound and a baby with few platelets is not a good combination. 

I have often joked that Phoebe wants to meet as many doctors from Sick Kids as possible.  We have seen doctors from many different departments and she greets them all the same way, with a big smile and a bop of her head.  We are preparing for another busy day, and I am hoping and praying for good news, and to be turning back onto a straighter and smoother road, with fewer doctors.  The road to home.

Good news, lots of it.

We have good news.  Lots of it.  Phoebe's lumbar puncture went well.  She was awake and smiling soon after.  A sample of her spinal fluid was removed and tested, and the results show that it is clear of any blast cells.  Wonderful news because the central nervous system is one of the areas of concern for relapse.  Phoebe will have 5 more lumbar punctures, about once a month for the next 5 months.  She will be completely finished by Christmas.  On to more good news ... a test was done recently to determine the percentage of donor cells that are active and working hard in Phoebe's body.  This is a very important test because it is a measure of how successful the transplant process is, and also of how much if any of Phoebe's cells are left over.  Because Phoebe's bone marrow was once found to be full of leukemia, the hope is for few to none of her own cells to be remaining.  More than 95% of Phoebe's cells were found to be from her wonderful donor. 

A few more big steps towards recovery.

Phoebe is doing well.  We are still waiting for her to make platelets, and for her other blood counts to stabilize, but she is working hard.  Today may be the first day since transplant that she won't need a platelet transfusion.  It is after 6 pm and her platelets are holding strong at 63.  They like to keep them above 50.  Her liver is still slightly enlarged, but an ultrasound of it today showed nothing to be concerned about. An enlarged but well functioning liver.  She is tolerating all of her tube feeds, and has taken a few spoonfuls of  food by mouth.  Yesterday she tried hummus and loved it.  And her baby mum mums, she loves her baby mums.

She is smiling and making friends and today we took a trip upstairs to an outdoor patio for some warm and fresh Toronto air.  Phoebe loved that too.   We are still very much looking forward to going home, but as our doctor told us today; we are taking things one day at a time.  We are still very early in the transplant process and are aware that although home is within our reach, we want to make sure that Phoebe will be going there to stay.

The next steps ...

Phoebe has another big day ahead of her tomorrow.  Today in rounds, the doctors discussed the next steps of Phoebe's treatment.  When she was diagnosed with Leukemia back in October of 2010, like 15% of infants with Acute Lymphoblastic Leukemia, her cancer had also spread to her spinal fluid and central nervous system.  Throughout treatment at CHEO, Phoebe received fairly regular lumbar punctures with intrathecal chemo to kill the cancer cells that were found in her central nervous system and thankfully, following these treatments, Phoebe's spinal fluid was found to be free of Leukemia.  But, as we have been told often throughout this journey,  Leukemia likes to hide in the central nervous system, and so the treatment has to remain aggressive.

Before her transplant, we decided against total body irradiation (TBI), and with our doctors, chose to use high dose chemotherapy to kill the remainder of Phoebe's cancer and subsequently her bone marrow also.  Because Phoebe's cancer was also found in her central nervous system, in the absense of radiation, more chemotherapy has to be given in her spine in order to ensure that it remains clear of any Leukemia.

So tomorrow morning, Phoebe will go for her first of 6 lumbar punctures with intrathecal chemotherapy.  The procedure requires her to be under general anesthetic, and therefore she has to go without eating for 8 hours beforehand.  In the past it has been a quick and easy process, about an hour of recovery and a happy Phoebe soon after.  We are hoping for the same tomorrow.  The doctors will also be testing a sample of her spinal fluid, to make sure that it is still negative for any Leukemia.

It's funny, before all of this happened, Cancer never entered my mind.  Now, some days it is all that I think about.  I worry constantly.  I don't think this will ever go away, I think that it will always be at the back of my mind and simply a fact of our new life.  However, Phoebe has taught me to cherish each day and so I don't let these worries get the best of me.  Phoebe certainly doesn't.  She has gone through all of this, as i'm sure she will tomorrow's procedure, with a smile on her face and a little bop of her head (we call it "dancing").  She truly is amazing. 

Family reunion

Still taking steps forward and towards home.  Phoebe's giant pole of pumps is slowly shrinking, and she is now only connected to one small pump for IV fluid, antibiotics, and platelets.  She has started to make her own red blood cells, but still needs daily platelet transfusions because they are not there yet. She has been working hard and playing hard, and for the first time, she has learned to stand up and bear weight on her legs while being supported.  In the past she would curl her legs up towards her stomach whenever we would try and get her to stand, most likely from exhaustion and legs too tired from fighting leukemia to do much of anything else.  But now everyday she appears to be getting better.  There are still many steps to take towards a full recovery, but we are getting there.

I was so excited that she ate a rice cracker that I went out and bought a selection of baby snack foods.  Healthy and somewhat nutritious finger foods for babies.  Phoebe has sampled a few and although she is not eating much, she is making progress and will now open her mouth for the spoon.  She will usually only open her mouth once or twice, but it's a start. 

Phoebe has also been allowed to leave her room, so we have taken a few trips to the family room or the atrium to visit with her big sister Mae and to be together as a family.  Our visits are usually brief, squished in between platelet transfusions, Phoebe's many naps and tube feeds, but we enjoy the time even if it only a few minutes.  Mae is so excited to be able to see her baby sister again, and she insists on bringing a new toy for Phoebe every time she comes to the hospital - sometimes she brings books, other times her own cherished babies and dolls.   Phoebe always saves her biggest smiles for Mae, and her face lights up when she sees her coming - Mae  is usually running with remarkable speed towards her baby sister, so she also gets some giggles too.

Progress

Phoebe has been making wonderful progress.  Today she met with an occupational therapist who, among other things, will help Phoebe make the slow transition from IV nutrition and feeding tube feeds to oral feeding.  The transplant and all of the chemotherapy that Phoebe has received has understandably had a huge effect on her eating.  She has had fewer opportunities to try new foods and there have been times when her body has been too tired or in too much pain to even try and eat, let alone digest food.  Being able to eat "normally" has been pretty low on the priority list but now that we are at the end of Phoebe's very intensive chemotherapy and treatment, we can focus on eating and trying to make her life as normal as possible.

In the past, feeling so desparate to get Phoebe to eat something before her next round of chemotherapy, I would dance around the room with her and the bottle trying so hard to get her to drink from it.  Today after my talk with the occupational therapist I realized the importance in giving Phoebe a chance to actually enjoy eating.  We talked about letting Phoebe have control, and allowing her to navigate her own way back to eating, all the while developing and learning to have a good relationship with food.  One day Phoebe will eat and because of all that she has been through I would like the process to be as enjoyable as possible.

So we are starting slowly.  Today Phoebe very happily sat in her high chair and played with cheerios and crackers.  It was during her second time in the chair that she picked up a rice cracker and started munching.  She seemed overjoyed to be reunited with her beloved rice crackers and very happy with the crunching sound she made as she bit down.  She also held her own bottle and although she didn't drink from it, she was not horrified by it like she was last week when I presented it to her.  We have made some definite progress and tomorrow is a new day with new opportunities and more chances to move forward. 

On the home front, preparations are still being made to send us home.  We are being taught how to take Phoebe's blood pressure, manage her many medications, and give injections.  The plan seems to be to send us home soon after Phoebe has completed her antibiotics as long as everything is under control, but we want to make sure that Phoebe is ready and healthy enough to go home.  She has yet to make her own platelets and red blood cells so we are very cautious and really don't want to take any chances with her health.  When we eventually get back home, apart from out patient visits to the hospital, we would like it to be for good.  So we are taking things one day at a time and not packing our bags just yet ...

Looking forward

I think our doctors are afraid to take their eyes off of Phoebe.  She has been affectionately nicknamed "two visit Phoebe", meaning that although things seem fine in the morning when the doctors visit, the afternoon could tell a completely different story.  I think they were so excited by how well Phoebe recovered from her many issues last week, that they started planning her homecoming perhaps a bit too soon.  We have since learned that they aren't ready to take their eyes off of her, or at least not yet.  

Earlier this week, although Phoebe's oxygen levels were perfect, she appeared to be having some trouble breathing.  She had started the slow transition back to tube feeding and was being weaned off of the IV nutrition, but the doctors were worried that it may not be safe to feed her.  They were concerned about acid reflux and her feeds aspirating into her lungs and causing a very big problem.  So, her feeds were put on hold and the IV nutrition was turned up again.  She had a scope of her throat and vocal chords done (I held her while a small camera was inserted into her nose to look down her throat), and she had an x-ray of her upper chest and neck.  Both were very uncomfortable for Phoebe, but also very necessary as they showed that although there is some swelling and narrowing of her airway, there is no real damage.  Since Phoebe was intubated during her last surgery, she has had a persistent cough and her voice and cry have changed.  The worry among other things, was damage to her vocal chords, but i'm happy to report that they looked good.  Actually, today, for the first time since the intubation, she let out a very loud and hearty cry.  Only one cry, but it's a start. 

Now that it has been established that there is no real damage or obstruction, and that it is only swelling, Phoebe's feeds have been restarted.  The doctors are worried that she will have difficulty digesting and with acid reflux so they are starting very, very slowly.  Painfully slowly.  She is being fed every 4 hours during the day, and they are starting with 20 mls, and increasing it by 5 mls with each feed.  Phoebe should be drinking about 200 mls every 4 hours, so at this rate we will hopefully be off the IV nutrition by the end of next week.  Once her feeds are established and well tolerated through her feeding tube, we will be able to start trying to feed her by bottle.  And hopefully solid foods will be introduced then too.  It is impossible to predict what Phoebe will do, if she will take to the bottle again, or refuse it completely.  It has been four weeks since her last bottle feeding.  Will she want to pick food up and feed herself, or will it happen by accident?  Either way, one day she will eat.  This is just another obstacle on her road to recovery.  The wonderful thing is that this time when she starts to eat again, there won't be anymore cycles of chemotherapy to cripple the progress that she makes.

As for home, although Phoebe is still doing really well, the doctors want to make sure that she doesn't have any more surprises up her sleeve before they send us off on our way.  Either that, or she is just so cute, that they don't want to see her go.  Today we were told that Phoebe should spend 100 days isolated in the hospital, and whether she will end up doing that or leaving earlier is unclear at this point, but either way, I won't believe that we are going anywhere until our bags are in the car, and the car and we are on the 401 heading back to Ottawa.   Although this may seem like bad news, I am somewhat relieved because now Phoebe will hopefully be heading home healthier, with fewer medications, and therefore more opportunities for her to just be her 10 month old self.  And for all of us to catch up on all that we have missed.

Amazing Phoebe Rose

Today we heard the most amazing news.  The doctors are so impressed with how well Phoebe is doing, that they are talking about sending us home.  Amazing, wonderful, and very surprising news.  Last week, when everything seemed to be happening at once, when Phoebe had so many challenges that she had to face, home seemed so far away and I remember thinking that we would probably be at Sick Kids for even longer than we originally expected.  But, unstoppable Phoebe Rose has once again proven her incredible strength and resilience, and now we have not only caught up with the train, but Phoebe has completely turned it around. 

Right now we are taking things one step at a time, weaning Phoebe off of her pain medications, and IV nutrition.  She is not interested in eating by mouth at all, but we are hoping that that will happen once she is feeling better.  She is tolerating her NG feeds very well, and everyday she gets closer to her goal volume.  The doctors have switched many of her medications from IV to oral, so that it is possible for us to go home rather than be transferred back to CHEO.  Amazing.  It will all depend on how Phoebe does over the next week as to whether we will be sent to CHEO or home, but the simple fact that home has been mentioned is so wonderful. 

Today Phoebe saw an occupational therapist who will help us with her feeding and developement.  Although Phoebe has spent the majority of her life in the hospital, it has always been important to us to at least have the milestones that she should be reaching in the backs of our minds.  Now as she approaches her 10 month birthday, I find it hard to believe that she has spent most of her year in the hospital and at times it is very difficult to think back on all that she has been through in her short life.  Despite all of the obstacles that she has faced, all of the many challenges, as the weeks go by she continues to grow and learn new things.  Phoebe has taught me, among many other things, that anything is possible.