So long yellow gowns

Phoebe's white blood count is 4 today and her neutropolys are up to 1.68.  Very impressive Miss Phoebe Rose.  Phoebe has now surpassed the magic numbers for engraftment, so we no longer have to wear the lovely yellow gowns over our clothes.  We are out of isolation, but Phoebe is still on a monitor for her heart rate and oxygen levels so there won't be any trips outside the room.  Or at least not yet.

Losing the yellow gowns marks a very important accomplishment.  It means that the transplant was successful and that Phoebe has engrafted.  Her bone marrow is now making white blood cells, the red blood cells and platelets, we have been told, will come next. 

Our doctors are getting to know Phoebe better, and are starting to expect the unexpected.  This morning in rounds they discussed Phoebe's many issues but commented that most of them are starting to clear up or look better.  The main issue that remains, and that has the doctors stumped is Phoebe's liver.  Although her enzymes are now back to normal and she no longer has veno-occlusive-disease, it is still enlarged.  An ultrasound of her liver and kidneys this morning showed that both have good blood flow and appear to be working well, all things considered, but that her liver is still very big.  They are monitoring the liver and because Phoebe has been afebrile for the past 24 hours they have decided to stop three of her four antibiotics.  They are also continuing to wean her from morphine, and are planning to also wean her off of the TPN (IV nutrition).  The hope is that once we remove some of her many medications and start to peel back the layers, her other issues will also work themselves out.

In the meantime, Phoebe's personality is coming back.  We have had more smiles, and she has been sitting up and playing, reaching for toys, and having fun watching her favourite Baby Einstein videos.  This morning she even "danced" a bit to Old McDonald.  She is also back to her feisty self and has started to fight with her nurses again.  She very forcibly pushes their hands away every time they try to take her blood pressure or temperature.  Although it makes their jobs more difficult, it is nice to have our feisty Phoebe back. 

Making strides

With each day that passes, Phoebe gets a little bit better and her white blood cell count climbs a little higher.  It is .6 today and her neutropolys are .06.  Slow and steady.  Although cautiously optimistic, it seems that we have turned a corner and are now on a slightly straighter road.  Phoebe's liver enzymes are starting to drop closer to normal, the doctors are starting to wean her off of her pain medications, and although she is still on TPN, she is allowed to have some formula if she wants. So far she hasn't shown any interest in eating but like everything else it will take some time.  We still have a long road ahead of us, but now it seems that with the magical white cells on board, anything is possible.  

Phoebe had a new picc (peripherally inserted central catheter) put in on Thursday.  This time it is in her arm and tunnels towards her chest and heart.  They were unable to put a central line in due to the infection, so although they would like to replace the picc with a central line at some point, we are hoping that the picc will last and maybe even be her fourth and final line.  With the picc line in now, Phoebe is avoiding the sometimes 3 pokes per day that she was getting before.

She is still on antibiotics, but has been fever free for the past two days.  She does have a rash on her skin, which the doctors say may be hyper-acute GVHD, or just a reaction to the countless medications and blood products that she is receiving.  Phoebe typically reacts to everything so it is difficult for the doctors to definitively say what is causing the rash.  To be on the safe side, and in case it is GVHD, they have started her on steroids.  The steroids suppress the immune system, and work to fight the GVHD.  Although we want to see some GVHD in order to also have the graft versus Leukemia effect, when it comes on as quickly as it may be with Phoebe, they want to make sure that they can keep it under control. 

Once Phoebe's white blood cell count reaches 1.0, and her neutropolys are 0.5, as long as she is well she will be able to leave her isolation room and visit with her big sister in the family room outside the BMT unit.  Mae asks every day when she will see Phoebe and she has even started to ask "How's Phoebe's day is?."   She also points to strangers on the street and says "that man can't go see Phoebe".  It is very difficult to explain why she isn't able to see her baby sister, and although she is still very young, I know that she worries about Phoebe and wants to protect her.  Every day we get closer to that big 1.0 and that extra special reunion. 

Slow and steady

Phoebe's central line was removed successfully on Sunday and she was given 2 peripheral IV's, one in her foot and one in her hand until her infection clears and a new central line is able to be put back in.  With that out of the way, the supposed source of infection gone, we were ready to relax and take a breath.  Phoebe's little body obviously had other plans.  Although she had been afebrile for most of the weekend, on Monday evening she spiked another high temperature of 39.9 and throughout Tuesday and today her temperature has continued to be an issue.  All of her blood cultures have come back negative so our doctors are continuing to search for and treat the source of the fever with more broad spectrum antibiotics.  On top of the fevers, her liver enzymes have started to climb and the doctors suspect she has VOD (veno-occlusive disease).  It is a complication of transplant and occurs when the veins in the liver are blocked.  In Phoebe's case it is mild and treatable and the doctors are monitoring it very closely.  However, like all complications from a bone marrow transplant, it is very serious. 

Today our doctor summed up exactly how I feel. She said that she feels like she is chasing a train, that she wants to and will get on but she is just not there yet, and it is not for lack of trying. Every issue that Phoebe has has another issue or consequence attached to it.  When the liver is treated, the kidneys take abuse, medications that Phoebe needs to fight off infection cause her skin to react, or her temperature to climb. I have learned that it is a fine balance. Often when it seems like there is no light at the end of the tunnel, that we will never catch the train, something happens to strengthen my spirit and restore my hope.  Over the past few days while we have focused on all of the stress and worry attached to the many issues that are surfacing, something miraculous has been happening in Phoebe's body.  First it showed up on Monday and Tuesday in the form of .01 neutropolys.  The doctors and nurses cautioned us, saying that it could be weeks before we would see more, before Phoebe would really start to engraft.  Then today those little neutropolys grew to .03 and Phoebe's white count made a couple tiny steps forward to .2.  Slow and steady and earlier than expected, Phoebe is engrafting.  So while there are many things going on that are a source of worry, anxiety and stress, I am choosing to focus on .2.  .2 tiny warriors that like Phoebe are most definitely ready to fight. 

Tonight while Phoebe was drifting off to sleep, a cold compress on her forehead to help break the fever, I told her about .2 - those little fighters that are finally here to help her on her road to recovery.  I think she will sleep well tonight.

A busy day

It would seem that the source of the fever has been found.  Phoebe's very observant dad noticed some swelling around the site of her new central line, and since then it has been a flurry of activity in her little room.  Doctors from our transplant team, infectious diseases, image guided therapy, thrombosis, and radiology have all been in to visit with Phoebe.  After what seemed like a lot of back and forth between doctors, an ultrasound of Phoebe's neck and upper chest (where the line runs), our doctor arrived to tell us that the line needs to be pulled but that as long as nothing happens between now and tomorrow morning, they can wait until tomorrow.  Because Phoebe has a history of clots, she takes a blood thinner twice a day.  Going into surgery with a blood thinner on board is risky, so waiting until tomorrow and holding the blood thinners until then is thought to be the best and safest option for her.

Looking at Phoebe today she appears to be on the mend.  She has been fever free all day, her heart rate is normal, her belly is less swollen, and we have even seen some smiles.  Wishful thinking leads me to believe that the wonderful new cells have started to work their magic, but the doctors are hestitant to agree.  They only refer to engraftment once white blood cells show up in Phoebe's blood test results, but say that the process of engraftment may be starting to take place - the simple fact that Phoebe's body is showing a response to the infection around her central line site is indication of some white cells in the blood (or at least I think so).  We still have a way to go, and if Phoebe does have some new fighter cells, those tiny warriors are working very hard to help her to get better. 

Tomorrow morning she will be going in for surgery to remove the infected line because the risks of the infection spreading to other parts of the body is high, and not a risk that any of the doctors are willing to take.  Then they will wait for 48 hours before putting in a new central line, which will mean more surgery, more anesthetic, more risk.  Because we are so close to the beginning of this journey, and Phoebe needs to receive multiple antibiotics by IV, have her blood tested daily, and also receive anti-rejection medications to fight against impending graft versus host disease, there really is no other option than to insert a new line. In the meantime she will need three peripheral IV lines inserted into various veins in order to give her medications, and access her blood. 

I believe very strongly in the power of positive thought and energy, so I would like to ask everyone reading this to think about Phoebe tomorrow morning at 8 am when she will most likely be having her surgery.  I think that with a surge of positive thoughts and prayers, sent from all around the world, it will be so loud and powerful that it will be definitely be felt, even if just by us and Phoebe, it will make a difference. 

One week down ...

Over the past few days, although Phoebe's temperature has been up and down, it has always been easily maintained with tylenol.  Last night it jumped up to 40.5 and after that it was so high that it wouldn't register on the thermometer.  Her heart rate, in response to her fever and pain, also jumped up and in the wee hours of the morning it climbed to as high as 230 beats per minute.  At rest on a good day, Phoebe's heart rate is usually around 120 beats per minute.

There are really no words to describe the fear, desperation and sadness that I felt this morning at 4 am, as I sat watching Phoebe.  She was medicated with tylenol, completely surrounded by bags of ice, with a cold cloth on her forehead but still running a temperature too high for the thermometer to register.  As I sat next to her crib, holding her hand and rubbing her swollen belly I began to tell her a story.  I told her about all of the dreams that I have for her.  Dreams of picnics in the sunshine, of running and playing with Mae, learning how to swim, of making friends and falling in love.  About plans to return to Toronto to explore the city when she is healthy, and to shop for prom dresses when she is big.  I told her about all of the wonderful things that are waiting for her, in the hopes that I could calm her down enough to lower her heart rate.  That I could talk some sense into her little body.  Many people have said that I have always been a good talker, so I thought it was worth a try.

In the end it was a combination of morphine and tylenol that eventually calmed her down and as I write this her heart rate is at a more manageable 165 beats per minute and her temperature is 37.7.  She has some pain, her belly is still distended, and her mucositis appears to be getting worse, but her vital signs are good.  The doctors are adjusting the amount of her morphine infusion and because her fever has been reoccuring for the past 5 days, they are running some more tests and she is being started on another antibiotic.   The hope is to find the source of the fevers and also that the new antibiotic will work better at fighting whatever may be brewing in Phoebe's body. 

Earlier this morning when things seemed impossible, when it seemed as if Phoebe's heart rate and fever would never come down, I thought again about all that Phoebe has done just to be here, about her incredible fight, and it became clear to me that anything is possible.  We are at day +7,  the sun is finally shining here in Toronto, we are an entire week post transplant, getting closer to engraftment with each day, and Phoebe has proven her incredible strength and resilience once again. 

Day + 4

Day + 4.  Yesterday morning Phoebe's temperature climbed to 38.6 and continued to climb throughout the day, reaching 39.6 at its highest.  Thankfully, it made its way back down and is within normal range today.  They take fevers very seriously here as without a functioning immune system, Phoebe is very susceptible to infection.  They draw blood cultures, take stool samples, urine samples, and watch and listen for any signs of infection.  She has also been started on broad spectrum antibiotics to help combat anything that may be brewing inside of her. 

She is not herself, but has made leaps and bounds since yesterday on her road to recovery.  We have been told by all of Phoebe's doctors and nurses that everything she is experiencing is to be expected, and so although it is difficult to see Phoebe struggle, we know that it will eventually get better.  Her white blood count has been completely wiped out now, and is zero today.  We are anxiously waiting for the day when her blood work will show developing cells and we can take a breath knowing that her little body is starting to recover. 

She is experiencing more side effects from the chemotherapy, and now has mouth sores and mucositis. She is not eating anything by mouth and her vomiting and diarrea have gotten so bad that the doctors have ordered TPN.  This will give her belly and bowels a rest while still giving her all of the calories and nutrients that she needs through her central line.  The mucositis causes her an extreme amount of pain, so much so that she is on a continuous infusion of morphine.  Having to give Phoebe morphine has been very difficult for me, it is not something that I ever imagined that I would be doing and at times I have resisted, waited too long, or negotiated other options with our doctors and we have ended up chasing the pain, rather than staying ahead of it.  At Sick Kids, there is no waiting, no catching up to pain, the doctors and nurses anticipate the worst and act on it quickly without any consideration of my uncertainties, hence the continuous infusion.  Watching Phoebe struggle in pain due to the mucositis, unable to swallow her own saliva because the mucous that is building up in her mouth is so thick, is difficult and unnecessary.  Morphine helps her to relax, brings her heartrate back down to within normal range, and allows her to sleep and rest in comfort.

Today in a desperate attempt to make Phoebe laugh or smile, I made faces, danced around (when no one was watching), and attempted as many strange noises as possible.  I could tell by Phoebe's eyes that she was amused, and when it seemed that she was trying to smile, she made a very sad groaning sound.  It hurts her to smile right now and upon realizing that, I came to realize (finally) how important the management of Phoebe's pain really is. 

Patience

It is day +2  and Phoebe's white blood count dropped from 1.2 to 0.2 overnight. The white blood cells are the infection fighting cells in our blood, and when they are non-existant, like in Phoebe's case right now, the body has no defences against germs and bacteria. Even the bacteria that exist naturally in our bodies can wreak havoc. Although this sounds and is very scary, it is to be expected because the high dose chemotherapy that Phoebe received pre-transplant was intended to completely wipe out her bone marrow where the leukemia was at one time, multiplying at an alarmingly fast rate.

Over the next month, we will be watching and waiting. Waiting for Phoebe's new bone marrow to start to make those very important white blood cells, red blood cells and platelets.  We will also be watching for signs of infection and of graft versus host disease.  Graft versus host disease is where the functional immune cells in the transplanted marrow recognize the host (Phoebe) as "foreign" and mount an immunological attack.  It can manifest itself in the skin, the gut, or the liver and can be a very serious side effect and complication of the transplant process.  In Phoebe's case, the doctors want some GVHD because with it comes something called graft versus leukemia.  Graft vs. leukemia is where the donor's cells will also attack any left over leukemia cells that may be in Phoebe's body.  Because Infant Leukemia is so aggressive, it requires aggressive treatment and so the GVHD and therefore GVL becomes a frightening, but very essential part of this whole process and of the cure.

Today, with Phoebe's blood counts dropping she is experiencing some side effects from the chemo.  We still see some smiles, but she is sleeping more, eating almost nothing by mouth and we are constantly changing her diaper.  On Jon's watch last night Phoebe lost close to a pound of her body weight, all a result of diarreah.  This required an almost constant changing of her diapers and the bed linens in the wee hours of the morning.  It was a busy and sleepless night.  Needless to say, she is not absorbing her feeds as well as before, and the doctors are expecting to start her on total parenteral nutrition soon.  This is a combination of fats and electrolytes given through Phoebe's central line.  It gives her belly and bowels a rest, and since the electrolytes go directly into the blood stream, they are well absorbed.  For most babies, eating is a natural thing that is well enjoyed, but for a baby like Phoebe who is going through chemotherapy, eating becomes a painful process that irritates mouth sores and causes belly aches.  Not being able to feed Phoebe "normally" is something that I have struggled with, so much so that at times it brings me to tears.  When Phoebe drinks an ounce of milk, we celebrate, when she eats half of a rice cracker we cheer - I think reaching a milestone, regardless of the child's situation is a cause for celebration, but for us, Phoebe's milestones are especially important.  The reality of this situtation doesn't allow for many normal mealtimes or opportunities to try new foods and we can only hold on tightly to the hope that one day Phoebe will join us at the dinner table and enjoy a meal just like everyone else.  But like everything else, it will take some time. 

"The two most powerful warriors are patience and time."  Leo Tolstoy

Lucky # 13

It  is seven o'clock and I am watching the last of Phoebe's new cells drip through her IV tubing.  We were moved into a clean insolation room today, a room that had been scrubbed down from floor to ceiling the day before.  Phoebe too, was scrubbed down, she was given an antibacterial bath, wrapped in a clean sheet and moved to her new room.  Jon and I spent the following half hour, scrubbing Phoebe's toys, books, and anything else that we would be bringing into the room.  Then we put on yellow gowns to further prevent spreading germs that might be on our clothes and joined Phoebe.  She will stay in this room until she engrafts and starts to make new cells, and that can take as long as 4 weeks.  During the coming weeks, every precaution will be taken to protect Phoebe from developing an infection as without a functioning immune system, even the tiniest cold can be very serious.  Thankfully we still have a very large window with a view, so Phoebe will get to see some more of her new city.
After an anxious hour  in the new room, Phoebe's nurse came in carrying a red plastic cooler.  She unpacked Phoebe's new bone marrow; which looked just like a bag of blood, but to me appeared to be glistening.  A small but brilliant bag of beautiful new cells.  The transplant took about five hours and worked just like a blood transfusion. Phoebe slept through most of it, but when she was awake she was eager to explore all of the new tubes and wires that she found attached to various body parts.  Stickers on her arms and chest to monitor her heart rate, a red light on her toe to keep track of her oxygen levels, a blood pressure cuff on her leg to measure her blood pressure every 15 minutes, and of course the IV tubing carrying her precious new cells. 

Earlier this morning, I spent some time reading messages of hope sent to Phoebe and us from her friends and family.  It means so much to us to know that so many people have been thinking of her and sending her strength and positive thoughts and prayers throughout her journey and especially today.  We have often said that we think Phoebe is wise beyond her months and that she knows exactly what is going on.  Sometimes when her doctors come in to talk to us she looks at them and  listens intently as if she understands exactly what they are talking about.  In the same way, I think that she can sense all that is out there waiting for her, all of the love and support being sent her way and it gives her strength.  We are so grateful for all of this positive energy that she can most definitely feel, and also for that one person somewhere out there in our big world who one day decided to register to be a bone marrow donor.  To that wonderful stranger, we will be forever thankful. 

The day before the big day.

Earlier today I watched our nurse, outfitted in a blue protective gown, gloves, giant eye shield and mask give Phoebe her last treatment of high dose chemotherapy. Phoebe was fast asleep while the chemo was administered and I sat close by, quietly reading, while it slowly ran through her veins.  It is such a strange thing to have gotten used to.  I remember the first treatment of chemo Phoebe received, I remember seeing all of the protective gear and wondering what this powerful drug would do to my baby's body. I later learned that these powerful drugs, despite how scary they are, would cure Phoebe of her disease.  Risk versus benefit is something that we have heard often throughout the past seven months. 

Tomorrow will be day - 1, and in Phoebe's protocol it is scheduled as a rest day.  Unfortunately because Phoebe's central line is still sluggish, instead of resting she will be heading to surgery to have her line replaced.  She will go under general anesthetic and the surgeons will remove the sluggish line and insert a new line.  All of this while Phoebe's blood counts are dropping and at a time when her blood is prone to clotting.  In other Phoebe news, she has developed another blood clot in her leg.  After weighing the risks versus benefits, the doctors have collectively decided that to replace her line is the best option.  Phoebe's central line is inserted into a vein in her neck and it comes out of her upper back.  It separates into two lumens and is where all of her drugs are given, and also where blood is taken for her countless blood tests.  It is a necessary component of treatment and it needs to be working well.  The worry is that a sluggish line would be more prone to infection and that it may not last through transplant.

So, getting ready for tomorrow we are foucsing on the benefits rather than the risks and finding comfort in the knowledge that Phoebe is exactly where she needs to be to continue on her path to recovery.   This is just another little bump in the road.

Counting down ...

In the world of transplants, we count down to day zero or transplant day and today is day - 4.  So far, Phoebe has completed the first of her high dose chemotherapies, Busulfan, and as I write this, she is receiving the second of three types of chemo, Etopiside.  The Etopiside runs through her IV in 12 separate syringes, each running over half an hour.  That's six hours of non-stop chemo.  Our nurse today was kept very busy, with the beeping syringe pump and checking Phoebe's vitals.  As usual it was non-stop action.  Phoebe is handling the chemo well, she is playing and laughing and smiling, but also making sure to tell the nurses when she doesn't like something. 
Today we opted to participate in "rounds".  Every Monday and Friday at Sick Kids, parents are invited to participate in discussions regarding their child's care.  We see a doctor everyday, but today doctors, nurses, dieticians, pharmacists, social workers, and anyone and everyone involved in Phoebe's care, convened in the hallway outside of her room.  They were waiting to talk about Phoebe and because she was wide awake when it was our turn, she also went out into the hall to chat with her team.  Phoebe was smiling and laughing and making friends while we talked about her cancer, how much she is eating, or not eating, whether or not she has been vomiting (not), and all about her bowel movements.  It was a facinating few minutes. 
Tomorrow and until we reach day zero, Phoebe will receive the 3rd and final type of high dose chemotherapy and then it will be the big day.

We're here

 It is amazing how quickly life can change direction.  On the drive here Jon and I were reminising about the last time that we were in Toronto.  It was about 3 years ago and it was the weekend that we got engaged.  Now here we are, 3 years later, married with 2 kids and about to embark on the second part of our very long journey to recovery.   We were admitted today at 11am and shown to our little room.  It is small.  Just enough space for Phoebe's crib, the chair bed, and her giant IV pole.  There is no bathroom, but a small sink for washing hands.  There is a very large window that lets in a lot of sunlight and gives us a good view of the city and all of its excitement. We took Phoebe for a walk around the city last night and showed her some of the sights.  She was mesmorized by all of the lights and tall buildings and kept looking up towards the sky and smiling.  She was so happy, and throughout the walk she babbled and called out excitedly, almost as if to say to anyone who was walking by "I'm here!".  Toronto and its children's hospital have a different energy, they are busy and loud, and full of excitement and last night for a few hours, we forgot about what brought us here, and took in the city lights and good energy. 

Now our first day at Sick Kids is coming to a close.  It is almost midnight and Phoebe is sleeping peacefully.  She has had a busy day.  After we were admitted, we were walked through Phoebe's new protocol and told what to expect in terms of medications and side effects. Then our nurse went to access Phoebe's central line to do blood work and get everything ready to start chemo.  Our first bump.  Phoebe's line appears to be clogged.  Right now at almost midnight, one lumen of two is clogged and the other is sluggish.  We need both for Phoebe's treatment as it requires blood to be drawn and medications to be given simultaneously.  Our donor is ready and waiting to donate on the 12th so we have to stick to a strick schedule.  In the meantime without both lines working, Phoebe has an extra IV line in her foot, and is poked everytime her blood is tested.  It is difficult for Phoebe, so we are hoping that everything  clears up by early morning when her first treatment of chemo is due.  If not, they have many contingency plans in place to ensure that the treatment stays on course and her transplant happens on schedule. 

In typical Phoebe fashion, part two of our journey has started with a bang.

Our 2 week vacation

We are almost at the end of our vacation away from hospital life.  Tomorrow we will start the five hour drive to The Hospital for Sick Children in Toronto and begin the preparation for Phoebe's transplant. The past two weeks that we have spent at home have allowed us to see all that we have to look forward to and all that we have missed. Phoebe has spent the majority of this time laughing with her sister and watching her play.  Mae telling her: "Phoebe do like this", while she jumps and Phoebe, listening and watching intently - her bright eyes eager to take it all in. She has "scooted" along the floor, excited to grab toys out of reach, and she has tried new foods, rice crackers being a favourite. She watched as her cousins jumped like frogs, sang songs, and made faces, delighted just to see her smile.  And Jon and I took many long walks together and happily caught up on the 6 months of life that existed outside of the hospital.   Throughout the many months that Phoebe was at CHEO, we would show her photographs and tell her about all of the wonderful things that she would see once she went outside, about all of the things worth fighting for.  It is a wonderful thing that Phoebe has now seen many of those things, and knows all about what she has to look forward to. 

Today we had our last visit to CHEO before we leave for Toronto.  Phoebe had her blood tested, and everything looks good. We found out the results of some of the tests that she had done in preparation for Toronto.  Her last bone marrow aspiration shows that her leukemia is still in remission and our doctors think that she is being sent for a transplant in wonderful shape.  Apart from her feeding tube, she looks like a happy healthy 8 month old baby. 

Earlier in the week, when thinking about what lies ahead for us and Phoebe, my nervousness about the transplant overcame my excitement about completing the first phase of treatment and I began to feel very sad.  Sad at the fractured state of my family, and at the fact that my little Phoebe, instead of spending her first year at playgroups and parks, would be in the hospital.  Then I thought about the wonderful donor who is ready and waiting to give her his life saving bone marrow on May 13th and I realized how fortunate we are.  Although unfortunate to be in this situation, we are so fortunate to be surrounded by so many giving, wonderful and selfless people and lucky to be able to give Phoebe the best treatment for her cancer.  And as we are about to embark on part two of Phoebe's journey, I will keep my thoughts focused on that.