A week at home ...

We have been home for one week and Phoebe is much happier. We had a few nights with fevers when we were first discharged, but I am happy to write that it has now been 3 days without. Things are improving, but Phoebe has been very tired and weak lately. She has not wanted to do anything but sit on the couch and watch movies or sleep and there were a few days after we were discharged from the hospital that she slept for most of the day. This is hard on all of us, but it is especially hard on Mae who misses her friend. Phoebe's body is obviously tired and we expect so much from it. When Mae is sick - which thankfully is a rare event, she rests. If she needs to rest all day, we let her rest and we don't worry. We know that her body will do what it needs to do to heal and get better. When Phoebe is sick or tired, she is constantly woken up - either for medicines, to have her temperature and blood pressure taken, to attempt to get her to eat and drink, or simply because having her sleep all day makes us worry that we are missing something. We ask a lot of Phoebe and we look to her to ease our worries. She often does as Phoebe usually appears very well, despite being very sick. It is when she doesn't, when she is hurting, that we are too. Each time Phoebe spikes a fever, we worry that all of this will become too much for her little body and as hard as I try to push it aside, the worry is always there. Thankfully, Phoebe is leading the way and each day that has passed since the fevers, infection and hospital admission, brings with it some improvement. Today Phoebe is interested in food, she has been up and using her legs to walk around the apartment, and she is talking to us in her sweet but feisty little voice. Sometimes she tells us to "weave her awone", but I could listen to her say that all day.

Today, Phoebe had a lumbar puncture and because Leukemia can hide in and spread to the central nervous system, this was checked for disease and chemotherapy was given. No leukemia was found, which is a relief and good news. The leukemia that Phoebe has appears to be isolated to her bone marrow. We are rechecking the bone marrow and Phoebe lungs via a CT scan in two weeks. We hope and pray for continued good news.

For now, we have the weekend off and we are looking forward to it. We are so grateful to be able to spend this time together. It is hard to believe that we have been away from home for seven months with no real plans to return any time soon. We would not be able to stay together as a family through all of this were it not for the support that we have received. The gofundme  site that was started by Phoebe's Aunt Vicki and Uncle Tim and the support that has resulted from this is simply amazing and has often left us speechless. We are blessed to be able to travel this road together and these donations and all of the help we receive from home help us to do this. There are no words to express just what this means to us. Thank-you to everyone who has shared this story, donated, helped, sent messages of hope and love, or taken time to think of Phoebe and pray for her complete healing - there is strength in numbers and this strength allows us to keep on keeping on.

Just over a month ago, Jon was in a car accident here in Memphis. Phoebe and Mae usually insist that we all go everywhere together, but this time Jon was alone in the car. The car was hit on the rear passenger's side, right where Mae sits, and then flipped over onto the driver's and Phoebe's side before skidding to a stop. Jon managed to walk away from the accident unscathed, but our car is a write off. With everything that has happened with Phoebe, this was the least of our worries, but our insurance allowed us to replace the car and this is something we need to get Phoebe to and from the hospital. We looked into purchasing something here, but because we are not residents of Tennessee, it was really complicated to have it insured and licensed. Thanks to Jon's brothers for test driving cars for us at home, to Michael for all of his help and Dan and Josh at Import Auto in Ottawa for making sure that we have a car that will safely take our family to and from the hospital and eventually home to Ottawa. This "new" car is waiting for us in our driveway in Ottawa (thank-you Michael) and Jon is heading there next week to pick it up.

We are always hopeful. Always hopeful. Phoebe has taught us that anything is possible, so we will keep putting one foot in front of the other, and we will continue to do all that we can to help Phoebe and Mae grow and thrive. We hope for a peaceful weekend and beyond that, for healing and strength, as we wait for Phoebe's bone marrow and lung tests to be repeated in two weeks. 

Go Phoebe go ...   

It finally snowed in Memphis this week which got me thinking of all of the snow that I have missed shoveling in Ottawa. We are blessed with the world's greatest neighbors/family a few doors down - thank-you to them for holding down our fort. 

"Home"

After ten days and nights in the hospital, we went "home" today. Phoebe is still having random fevers, but they often go down without Tylenol, so we are able to continue care at home. St.Jude is excellent at involving parents in every aspect of care and they do all they can to keep families together and out of the hospital. We are grateful for this as home is the best place for Phoebe right now. She was miserable in the hospital and often completely refused to eat or get out of her bed. Her reason for not eating cafeteria food, "they don't make it as good as I do", and no amount of reasoning would change her mind. Each day we spent in patient, we watched her get smaller and weaker and more withdrawn. She is not herself at all right now, but she is happier at home. Since we arrived, she has asked her daddy to make black bean salad, and although she only ate a few bites, we hope this is a sign of good things to come, so we can avoid another feeding tube. 

We are still not sure of the source of the fevers. Many things have been suggested, including leukemia, but we are holding on to hope that it is "just" an infection or a virus and that things will continue to improve. Phoebe has been tested for many, many things - everything possible I think - and so far, all results have come back negative. There is also no sign of leukemia in her blood. She is tired, and has a million reasons to be, but she has no other symptoms. Because this leukemia is aggressive and relentless, Phoebe has started to take a very low dose of chemo, specific to AML, in an effort to continue to calm the storm. It is often used in older adults, is well tolerated, and has shown some success.  There is hope and we are clinging to it. 

We are all excited to be home and Mae and Jon and I are excited to sleep in a real bed. We have all stayed in the hospital since Phoebe was admitted and we are exhausted. Mae refused to go home and wanted only to stay with Phoebe and tuck her into bed each night. There is a parent room attached to Phoebe's room and so that is where Mae would sleep each night, curled up on the pull out couch with either Jon or I. Another way that St.Jude helps us to stay together as a family. 

In other news, we finally got an apartment at the Target House, so while Phoebe was in the hospital, we moved out of the apartment we were renting, and into the Target House. This is our second stay at the Target House and like many things, it is bitter sweet. We have many beautiful memories here, we made life long friends, and were cared for by a wonderful staff. Many of the same staff are here today and were happy to see us, but sad that we are here. We are sad too, but grateful for another chance to see Phoebe run these halls. 

We hope that being "home" will bring a smile to Phoebe's face, a bounce to her step, more food in her belly and healing. One day at a time. 

A fever a day ...

We are still here - in patient at St.Jude. When we arrived on Friday, blood cultures were taken that have since grown bacteria and Phoebe's antibiotics have been adjusted to properly treat this. Her PICC line will be replaced on Wednesday, bringing the total number of lines to thirteen, or twelve - I have lost count. While all of this has been going on, Phoebe's entire body decided to break out in a bright red rash. The rash seems to come and go in terms of severity but when it flares, so do the fevers, so we are still here. Phoebe needs to be 48 hours without a fever before she is discharged.

The doctors suspect that Phoebe may have a virus in addition to the infection and that is what is causing the rash, although she has no other symptoms. They are testing for viruses and we hope to have results soon. We have had visits from the infectious disease doctors and been asked many questions, including whether or not we have recently been to Disney Land.

It is hard not to feel scared and overwhelmed. Phoebe still has no immune system - her white blood cell count was just 0.1 today. All of this is a lot to ask of that fraction of a cell.  When last checked, her bone marrow was making more leukemia cells than healthy cells. We need healthy cells to fight viruses and bacterial infections. We need healthy cells to heal Phoebe's tired body, so that we can continue to take steps forward. 

This morning, Phoebe woke up and asked for breakfast and a movie. She played while she watched and she cheerfully greeted her many visitors with a smile and a giggle before she eagerly showed them her latest, most prized possession, her bright pink tooth brush. Many people who visit comment on how far she has come and how much has changed since we were in patient last. Although she is not nearly as sick as she was then, she is not herself and we are constantly worried about what will happen next. We are choosing to focus on what the next good thing will be rather than waiting for more to fall apart. 

For the past three nights, Mae has slept in the parent room at the hospital. The parent room is connected to Phoebe's room and has a couch and a bathroom, so each night, Mae has tucked Phoebe in and happily cuddled in on the pull out with either Jon or I. We are thankful to be able to do this, as Mae refuses to leave her sister. We hope to be home soon, because we all miss our beds. 

A special thank-you to Sarah Lystiuk, an Arbonne Independent Consultant and old friend, for dedicating the proceeds of the sale of Arbonne products sold before February 28th, to our family. For more information, please visit her Facebook page at https://m.facebook.com/profile.php?id=215521985286701

In Patient

Phoebe has a fever and because she also has zero white blood cells, she has been admitted to the hospital. She has nothing to fight an infection which makes everything life threatening. Even the common cold can become very serious. Among many worries is a line infection and so blood cultures have been taken from Phoebe's PICC line and all we can do is wait and hope. If I could have anything right now, it would be an immune system for Phoebe.

The last time that we were admitted for a fever, we spent almost 50 days in the hospital and Phoebe was sicker than she has ever been. It is so hard not to worry, but we are doing our best to focus on the hope that Phoebe will be out of the hospital soon. 

We are taking things one day at a time, one step at a time, and always believing that eventually, we will get there. 

The place that we are trying to get to, where Phoebe can receive a transplant, is now a bit further away. It is further because of this set back, but also because the protocol that we had hoped Phoebe could be treated with, has temporarily closed. This protocol is Phoebe's only option for transplant as it offers something different and has less intensive conditioning. It is expected to reopen in 8 weeks, which is a long time to wait, but we are hopeful that this delay has happened to give Phoebe more time to heal and when we get there, her little body will be stronger. She is not ready right now. 

Last night Phoebe only wanted to play freeze dance. She was happy, playful, and full of energy. Just this morning, she was happy to tell everyone we met that she has now lost two teeth, proudly opening her mouth for them to see. She insisted on walking to the inpatient unit by herself. Now she wants only to sit on Jon's or my lap to sleep, rest, or watch her favourite movies on repeat. She is okay, but it is obvious that something is wrong and we are all too aware of how fragile and precarious this life we have is, and how quickly things can change. 

We hope tomorrow is a better day. We have to believe that tomorrow will be a better day. 

Thank-you for loving and caring for Phoebe and for following us on this journey. We read every comment and message and are strengthened by the hope that is shared and the prayers that are sent. We know that Phoebe is too. 

Thank-you also to everyone who has purchased Phoebe's "Monkey Love" t-shirt. There is still time to order by visiting this link. Phoebe is very proud of "her shirt". Our family has also recently started a  gofundme  site for Phoebe and we are overwhelmed by the kindness and support we have received. Thank-you. We are blessed and so thankful to be able to fight this and stay together as a family in Memphis, as right now, the only place we could ever be is by Phoebe's side. 

Phoebe's Friday the 13th

Today was a long day and it's still going. I am writing this from the medicine room at St.Jude. Phoebe is getting more chemo and if we are lucky, we will be home at 1 am. All of this to avoid a night in the hospital. 

We have the results of Phoebe's many tests and as usual, they are not straightforward.

The MRI of Phoebe's brain looks better. The inflammation is much improved and the spots that were fungal disease are stable and unchanged. These spots may just be scar tissue and there is no evidence of new infection. Good news. 

The CT scan is more complicated. The fungal lesions that we have been watching for months are unchanged and still very small. They could also be scar tissue. However, there are new spots throughout Phoebe's lungs. After looking at the MRI and seeing improvement, the doctors think that these spots are not related to the original spots rather they look like they are a result of the granulocytes that Phoebe has received lately. It doesn't make sense for Phoebe's lung disease to be worse while her brain is better. The plan is to repeat the CT in a week after the granulocytes have had a chance to clear out of Phoebe's tissue. This result does make Phoebe ineligible for any clinical trials or transplant which is devastating. 

The bone marrow results are about the same, around 70% disease, but Phoebe's bone marrow is empty of recovering cells. The chemo we are trying appears to be keeping things at bay and so we are continuing, but giving the doses more frequently and repeating the bone marrow tests with the CT in a week. I hoped for less disease, but I am relieved that it is not worse. Without the chemo, Phoebe's bone marrow would recover with leukemia cells. 

Our day started early this morning and has been full of the ups and downs that are typical of this journey. This morning we were full of hope. Phoebe looks so good, she is full of energy, she is eating good and healthy food and gaining weight, she appears to be thriving, and we had a great visit with her doctor. We talked about a new treatment - a drug that Phoebe hasn't received yet accompanied with a new and more targeted medicine that is part of a clinical trial. Because Phoebe is a rock star and likes to swallow pills, she is eligible. Or at least she was before the CT results. 

After this appointment, Phoebe insisted on walking all the way to her MRI and CT appointments, from one side of the hospital to the other. She cheerfully waved and shouted "good-bye!" as she headed in to the MRI area with her daddy. I was instantly filled with hope and pride. Phoebe, our shining star, who is able to smile and thrive amidst so much struggle. 

After Phoebe was sedated for her tests and while we were waiting, we ran into her oncologist. She had already had a call from the radiologist about Phoebe's lungs and she told us the news. She looked worried and in that moment, the joy and hope that we shared earlier was gone. Just like that. The effect that this could have on further treatment is devastating. 

Jon and I spent the next two hours full of worry as we waited for Phoebe to wake up from sedation. Hours later at home, we got a call from Phoebe's oncologist with the rest of the news. All hope is not lost. Phoebe probably doesn't still have invasive fungal disease in her lungs, instead it looks like it is from the granulocytes. We just need to prove this with follow up CT scans to once again be eligible for transplant and/or other trials. We are still fighting this. 

Throughout the long wait for Phoebe, Mae asked questions. She is wise and smart, she has been present for too many horribly difficult talks with doctors and she has seen me break down in a mess of tears and sobs too often to be naive to all that is going on. 

"If Phoebe's brain is sick again, I will be so sad". Then, "What are the cells doing? Are they fighting? Will Phoebe need to live at the hospital? Will she be so sick again? Will she need Daddy's cells? Are we moving to Target House? Will we ever get to go home to Ottawa? I miss Ottawa, but I want Phoebe to be better". Sigh ... sweet Mae. I want Phoebe to be better too. 

And so, it is now close to midnight here in Memphis, and we are still at St.Jude. It has been six hours in this very small room. Four of these hours are to give medicines that we hope will help more than they will harm. All of these hours are to watch and listen to Phoebe and Mae play. Tonight they played "doctor". Their daddy was "hooked up " to fluids and "sleepy medicine". I was given "a lot of meds". At one point, Mae was whipping up some leucovoran and Phoebe's bear needed a tubie and a flush. 

Another day that we are thankful for, and  all we want is more. More of everything. Even the hard parts. 

To add to today, Phoebe lost a tooth. It is the first she has lost rather than had pulled due to the side effects of chemo and transplant and it was a beautiful and normal moment. The tooth is already tucked safely under her pillow awaiting a very late night visit from the tooth fairy. 

Love for Phoebe Rose

Tomorrow is a big day for Phoebe. She has a bone marrow aspirate, MRI and CT scan. The results of the last bone marrow test are confusing as although things looked improved under the microscope, the chimerism results told a very different story. Phoebe's last bone marrow chimerism was just 14% donor cells, down from 50% on the previous test. Not good at all. 

Despite these results, Phoebe appears to be doing very well - she is often up playing and dancing with Mae, she has managed to eat enough over the past few days to keep her feeding tube out, and she is full of joy. Her energy does not match her bone marrow results. Tonight, she is connected to IV fluids in preparation for her tests tomorrow. The fluid is heavy and kept in a bag that is half her size, but instead of letting it slow her down, Phoebe drags the bag behind her as she dances. Her joy helps us through and keeps our minds off the terrible news that we heard last week. 

Phoebe's tests begin tomorrow at 10:30 and we hope to have some news later in the day. If you could, please take a moment to send some love Phoebe's way tomorrow morning. Join us in visualizing healthy cells and a healthy and strong Phoebe. 

We are so grateful for the love and support that we have received on this journey. 

Thank-you to the staff at St.Paul's Catholic High School in Ottawa for their ongoing support and for holding a fundraiser for Phoebe at their Christmas party this year. 

Thank-you to Manor Park staff and students for your support - and to the Manor Park alumni who organized a bake sale for Phoebe today - we are amazed by your spirit and kindness. 

Thank-you to our friends at RJW Stone Masons - the Parliament Hill site, for continuing to help our family with weekly 50/50 draws. Phoebe can't wait to thank you in person. 

To Catherine Landry and Tama McCartney for creating a one of a kind t-shirt from one of Phoebe's prized paintings - you have lifted our spirits and made Phoebe so happy and proud! For more information on these shirts and how you can purchase one (quick, they are selling out fast!), please see : 

http://teesforthepeople.com/products/monkey-love-by-phoebe-rose

It takes a village and we wouldn't be able to do this, to stay in Memphis where Phoebe needs to be, without help. There are no words that express how grateful we are. Thank-you for traveling on this journey with us. This road is long, so much longer than we could ever have imagined, and it is incredibly hard. Your support, love, prayers and shared hope helps us through. From the bottom of our hearts, thank-you.

A step forward

Slow and steady.

Phoebe's follow up bone marrow aspiration that was done today showed a decrease in leukemia. The amount of disease has dropped from 83% to about 55%. Phoebe's spinal fluid is clear of disease which is a huge relief.

Phoebe's doctor is happy with the results and has decided to continue with this chemo. The amount of chemo that Phoebe received last week was very small, just two reduced doses with the goal being to see if there was any response or excessive toxicity before continuing. Thankfully, Phoebe's leukemia responded and although we saw a jump in liver function tests directly following chemo, those numbers are now almost completely normal for the first time in months. We can take another step forward and hope for more response. What is also great is that Phoebe has experienced very few side effects. Her blood counts dropped and she may receive another granulocyte infusion this week so we can stay ahead of any infections, but for the most part she has been happy and joyful Phoebe. She has been up and playing with Mae, laughing, and even doing some dancing and jumping. Mae is so happy to have her friend back and would play all day with Phoebe if she could. Watching them play is my favourite thing. 

"Phoebe, will you play with me when we get home? I promise I'll make it all about monkeys and you can be the mom". Mae

Despite the chaos that has a tendency to fill our days, Mae is thriving. She is learning and reading and I am thankful for the opportunity to teach her (and to finally use my teaching degree). Home/hospital schooling is a lot more challenging than I thought it would be and I am really proud of what we have all done together. Jon is often the math teacher and not only does he have Mae excited about numbers while turning her into a math whiz, he has given her confidence. Beautiful confidence. 

I am writing this from our little room in the medicine room at St.Jude. Phoebe is receiving chemo, she is hooked up to a heart monitor as this drug is known to lower heart rate, but she is taking it in stride and listening to music. Mae is hanging out and so far all is good. We expect to be here until close to midnight, but after that we will go "home" and sleep in our own beds. Another long day, but a day that we are thankful for. It really is the little things. 

"There are only two ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle". Albert Einstein 

Everything. 

Thank-you all for keeping Phoebe in your thoughts and prayers. We read each message, comment, email and are so grateful for the support and love. You help us through.