Weary

We had the weekend off and we were all looking forward to it. Phoebe finished the clinical trial on Friday and we were ready for a break and a chance to breathe. Saturday was okay - Phoebe was not herself, but she had just taken the final dose of the study drug, so we expected some side effects. On Sunday she woke up covered in spots and in pain. The pain escalated and by lunch time she was unable to stand up or walk and she spent the day on the couch. We called the hospital, but because Phoebe was afebrile they suggested staying home and being seen by her regular team on Monday morning. Phoebe cried at the mention of a trip to the hospital and we wanted her to be seen by people who know her best, so we stayed home and watched for fevers. Phoebe's temperature remained just low enough to allow us to stay home, but high enough to cause worry. 

Bright and early Monday morning we were quickly ushered into an isolation room. We have been in "contact isolation" for the past seven months due to an antibiotic resistant bacteria that just won't leave Phoebe alone, so we are no strangers to isolation, but we are now under very strict isolation as Phoebe is being tested for chicken pox. 

She is also being tested for viruses, bacteria and fungal infections. By 10am we had seen multiple infectious disease doctors, and Phoebe's blood, snot, and saliva were sent to the lab for testing. Phoebe spent most of this time crying out for the doctors and nurses to leave her alone. 

Never a dull moment has become never a moment where I am not terrified and fearful for Phoebe's life. And heartbroken. 

The CT scan of Phoebe's lungs that was originally planned for Friday has been moved to tomorrow and expanded to include Phoebe's belly and sinuses. The infectious disease doctors are mainly concerned that the rash could be a "breakthrough fungal infection" - breakthrough because Phoebe is already on what is considered to be the best antifungal medicine. There will also be a bone marrow aspirate and a skin biopsy. 

Phoebe has zero white blood cells. Not a single fighter cell to come to her rescue. She is at risk for everything and everything is life threatening. To write that we are worried does not do this justice. We hope this is something simple that Phoebe can recover from quickly. We hope for smooth and quiet days. We long for peace and healing for Phoebe. We wish we had the luxury of worrying about fevers and chicken pox in a healthy child, but those days are so far in the past it is like they never existed. 

We are weary but holding it together for Mae and Phoebe. Mae, who is normally our pillar of strength and resilience has also started to break down. She misses her playful sister and she misses her life at home. Before the rash showed up, Jon was planning to take her home for a week so she could play with her friends and cousins. Each day she shows me the dresses she is planning to pack and then sadly asks when she can go "just for a little bit, because I really need to be with my sister". 

Please keep Phoebe and her big sister Mae in your thoughts and prayers. They deserve better than this and we hope and pray for just that - better. 

Three Little Birds ...

We are still here. I have tried to write but, lately, by the end of the day, I am so exhausted that I can barely string a sentence together. All of this stress seems to be catching up to me and Phoebe has been busy. Last Wednesday she had a bone marrow aspiration. This test was done to see how well her leukemia responded to the study drug. There is a repeat aspirate scheduled at the end of the clinical trial to determine the results when the study drug is combined with chemo. The results so far are promising. After months of seeing the same level of disease or more recently, more disease in Phoebe's bone marrow - these results are slightly better. Four doses of the study drug dropped the percentage of leukemia in Phoebe's bone marrow from 70-80% to 59% and improved the chimerism from just 8% donor cells to 38%. Better. Still a very long way to go, but better and we are clinging to better with all that we have. 

Shortly after we received this news, Phoebe spiked a fever. No time to breathe or take in the better news, Phoebe was admitted to the hospital. Blood cultures were drawn, doctors came to listen to and look at Phoebe - she cried and told them to leave her alone; that she wanted to go home. We worried. No source of the fevers was found, Phoebe refused to eat the "hospital food" and she became more frustrated and depressed as the days passed. After just 24 hours without a fever and no answers, we asked if she could go home. The doctors reluctantly agreed but the transfer from in patient to out was not at all seamless and we ended up spending most of the weekend in the medicine room at St.Jude. Sometimes things just don't go as planned. Yesterday we arrived at the hospital at 10am and left after midnight - all fourteen hours were spent in one tiny room as Phoebe is still isolated. Sometimes I feel like this is one giant social experiment - how many hours can one family of four spend in a tiny room before someone loses it? How much lego can two kids build in 14 hours? 

Thankfully, today is a day off and Phoebe appears to be feeling better. Her quality of life is very important to us and she is a different child when she's at home. She hasn't had any more fevers and she ended her hunger strike thanks to some great Canadian snacks that arrived this morning (thank-you!!). As I write this she is painting with Mae and for the first time since Thursday, I feel like I can breathe. 

The plan moving forward is to complete the clinical trial - Phoebe has two doses of the study drug remaining and will finish on Friday. After that, we will repeat the bone marrow tests and hope and pray for good results. 

We are anxious but hopeful. Always hopeful. While all of this was happening, we moved out of our apartment at the Target House so that they could do minor renovations and move in some new furniture and art work. We came home after our marathon day yesterday to this in Mae and Phoebe's room ...

 ... three little birds.

Every little thing gonna be all right. 

Easter 2015

For the past four years, or since cancer entered our lives, Easter has been our holiday. Most other holidays have been a mess of hospital admissions, transplant, and relapse, but Easter, we have managed to spend each Easter since Phoebe's diagnosis out of the hospital and some have even been spent at home. Easter has always come through for us and we have many wonderful memories of beautiful and healthy spring days. This year has been different.

Phoebe has spent most of the weekend in the hospital. She is struggling with electrolyte imbalances and needs to be monitored closely. Combine this with how slowly things move in hospitals on weekends and it makes for an exhausting and long two days. We squeezed in a twenty minute Easter egg hunt in between blood work yesterday before the hospital called us to come straight back. The rest of the day was spent in a tiny room with Phoebe begging to go home. When we eventually got home, Phoebe was so frustrated and upset that she told us that Easter was finished and even the bunny should stay away. 

Today we were back at the hospital and we will be here tomorrow, and the next day, and the day after that too. Phoebe has had four doses of the study drug and until yesterday, everything was very close to perfect but today we are balancing high and low electrolytes with IV fluids, a grumpy Phoebe, and hoping to get home soon. 

Phoebe will have her bone marrow retested on Wednesday and following that, she will complete the rest of the study. The doctors want to determine how Phoebe's leukemia responds to the study drug alone - this is the purpose of Wednesday's test, and then how it responds to the study drug with chemo. The chemo combined with the study drug will complete the clinical trial at the end of this month. 

We are hopeful but anxious. Despite all of these extra hospital visits, overall and all things considered, Phoebe seems well. She is requiring fewer blood and platelet transfusions and although she is grumpy ( I would be too), when we are at home, she is usually happy to eat, laugh and play. She has mastered the pedals on her bike (again - another victory after the stroke), and she has started to read - this last thing is simply amazing and not something we have been actively teaching. Last week, Phoebe picked up an early reader book and started to read. Jon and I watched her and he said, "how does she even know how to do this?". She is something else. 

So, for now, we will keep moving forward with hope. I think I write that a lot, but it is what we do. It is all we can do. And when we spend our days with Phoebe, who against all odds has overcome obstacle after obstacle - we are blessed and continually refueled with hope. 

Easter 2011 

Easter 2012 

Easter 2013 

Easter 2014 

Easter 2015 

New hope

Yesterday Phoebe had an EKG, an echocardiogram, an LP, blood work, and her vision was tested. Just another day. Her spinal fluid is clear of leukemia, her heart is functioning perfectly and she sees well! All of these tests were done to determine if she is eligible for the clinical trial. Thankfully, she is and so bright and early this morning we arrived at the hospital to start treatment.

This morning at 7am Phoebe had more blood drawn for the clinical trial, then at 8am she received her first dose of the study drug, selinixor. She then had her blood tested every hour until noon and again at 4. Other than hopefully reducing Phoebe's leukemia burden - this is a research trial and so many things are being studied and monitored and we are more than happy to do what we can by sharing Phoebe's blood, if it will help. 

This is the fifth early stage clinical trial that Phoebe has tried in less than four years, so in many ways, we have been here before. We have felt the excitement, the hope and the fear that comes with trying something new. When compared to the approved front line treatment that Phoebe received upon diagnosis, these clinical trials have been gentler and more effective overall. More than anything and most importantly though, they have given us time. 

We have tried many new things and each time we do, I think of what one of Phoebe's doctors from SickKids once told us. This doctor is one of Phoebe's many heroes and a reason why she is still here with us today. When the very first clinical trial that we tried failed to be as successful as we had hoped, instead of being discouraged he told us that he has to believe that every new drug will help at least one child, or that it could be the one, as without this belief and this hope, he would never recommend or try anything new. Without research and progress these things that need to change and improve would remain the same. 

Today Phoebe's little room was bustling with activity and excitement. Perhaps this drug is the "one" that will help. Perhaps trying this will open doors for other children. Perhaps trying this will open doors for Phoebe. We have to believe this to be true. The belief that anything is possible, and the reminder that it just takes one, is what keeps us going. That and Phoebe who is completely oblivious to the fact that she has a very aggressive and life threatening disease. 

The sun is shining here in Memphis and every where we look another tree is bursting with colorful blossoms. It is warm and beautiful. We had a few hours between blood draws today, so we decided to head back "home" to the Target House for lunch. I'm glad we did because when we arrived we saw that the "elephant fountain" had just been turned on. The pure joy and excitement on Mae and Phoebe's faces when they saw this was just the best. 

They spent the next few minutes running around and around the elephants before they decided they needed to change into "clothes like bathing suits", in case the fountain splashed them. 

Phoebe then rode her bike around the elephants, ran some more, ate a lot, all while helping us through. 

Go Phoebe go. 

Lead the way, Phoebe

We are still here. 

If we look at Phoebe instead of looking at her blood and bone marrow results, we are comforted and encouraged. She looks good and appears to be feeling great. She is eating well, growing taller, gaining weight, she is playing, laughing and she seems to only be getting better and stronger. She is the first to wake up each morning and when she does, she often tells us that she is "starving for breakfast". Her doctors often comment on her energy and overall wellness. It is just unbelievable that she can be so well, yet so sick. But, she is.

Phoebe had bone marrow tests and a CT scan of her lungs on Friday. The CT scan shows that her lungs look much improved. This is good news and allows us to continue treatment for the beast that is leukemia. Phoebe's bone marrow is still filled with about 70% leukemia cells. Her bone marrow chimerism results are worse with just 8% donor cells and 92% leukemia/Phoebe's cells. She is completely neutropenic and although there is no sign of leukemia in her blood, she is requiring weekly blood and platelet transfusions. With only 8% donor cells, her body is just not making healthy red blood cells, white blood cells and platelets. We need these things to survive and so we are eternally grateful to those of you out there in the world who donate blood and platelets. 

Phoebe's results do not match the girl who we watch running around the apartment asking for a second helping of Shephards pie. For this - for Phoebe's seemingly unbreakable spirit, we are so thankful. 

Because these results show very little improvement, today we signed more consent forms. Complete with lists and lists of possible side effects that are similar to the possible side effects that we have read about for the past four years, these consents are for a new study treatment that will start later this week. Tomorrow Phoebe will have a lumbar puncture with chemo and then on Thursday she will start an investigational drug. This drug is new in the treatment of pediatric leukemias, it is not yet approved by the FDA, but there have been some patients who have responded to it completely. It is also well tolerated and unlikely to make Phoebe sick. It is, like all of the other treatments that have given Phoebe a chance since 2011, not available in Canada. We are grateful for this option, for all of the staff at St.Jude,  and for doctors who continue to try very hard for Phoebe. We don't talk about odds anymore - we have been told enough times since the first relapse in 2011 that Phoebe's chances for a cancer free future are small, but we see her and we know that she is mighty. She is not a statistic, rather she is an almost five year old little girl who has spent most of her life overcoming odds and showing us that anything is possible. 

Our long term goal is still to make it to transplant as this is the only curative option that Phoebe has left. It is, like Phoebe, our small but mighty hope. The transplant protocol that remains Phoebe's only option is still temporarily on hold and going to transplant with a heavy burden of disease is not ideal, so we are choosing to look at this time as a blessing. Phoebe needs this time to heal and because this is true, it is what is meant to be. We have to believe that eventually things will fall into place. 

While all of this is going on and while the doctors and researchers are doing their thing, we will continue to do ours. We will surround Phoebe with love and support. We will move forward with hope. We will do our best to fill and support her body with good and nutritious food, we will watch her continue to grow and thrive and we will always believe in her. We will live and enjoy each and every moment. Even the moments that are spent in tiny hospital rooms are precious. Time, no matter how it is spent, is a gift. 

All of this is still completely and overwhelmingly terrifying and devastating and honestly, Phoebe and Mae's spirit and determination is what keeps us going. Mae often reminds us of how far Phoebe has come. "Remember the time when Phoebe was in the hospital and would only sleep? Look at all she does now". She also is the first to remind Phoebe to work on strengthening her left side. "Phoebe use your lefty - remember that lefty is a good helper". As for Phoebe, each morning she wakes up (first), and greets the day with a smile. She doesn't complain if her day includes a trip to the hospital. She takes it all in stride and she enjoys life. She is amazing and she is leading the way. 

Please keep sweet Phoebe in your thoughts and prayers. 

"We must accept finite disappointment but never lose infinite hope". Martin Luther King Jr.

HOPE 

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.