On October 26th, 2010, at 9 weeks old, Phoebe Rose was diagnosed with high risk MLL + Infantile Leukemia. A not well understood, difficult to treat and cure, Leukemia. This is her story of hope and love in the face of cancer and despair. It is best read from the beginning. Thank-you for visiting.

Friday, December 19, 2014

A Christmas Miracle

The sign above the door in the procedure room at St.Jude says:

"If you can dream it, you can do it!" Walt Disney 

Before the bone marrow tests on Thursday, I held Phoebe's hand as she was given what she calls "sleepy medicine", for what could very well have been the 100th time - I have lost count, and then I looked up and saw this message. A sign, I thought. We have big dreams for Phoebe Rose. 

Today, Phoebe's doctor gave us amazing news. The results of Phoebe's bone marrow aspirate and biopsy are MRD negative! Negative for both ALL and AML. After looking for leukemia with the most sensitive tests, they found none. Zero leukemia, just healthy cells. This is quite something and the first words out of my mouth were, "are you crazy?". Not sure where that came from, but in that moment I was so surprised, relieved, amazed and happy. We went into this test feeling a bit broken. We were hoping for less disease, but given how long we have been at this, how much disease was found with the last test, and how we are now fighting AML and ALL - MRD negative seemed too good to be true. 

Instead it is good news and happy doctors. And a Christmas miracle. 

So, we are trying to make it home for a quick Christmas visit with plans to return to St.Jude just before the new year for more appointments. While these results are wonderful and encouraging, Phoebe is not finished. Instead, today she had more of the same chemo that produced these amazing results and she is now a candidate for a third transplant. Going to transplant with a negative MRD is a good thing and something we didn't think was possible, but to be completely honest, we have a very long and treacherous road ahead. Attempting a third transplant is not something that is taken lightly or even possible without a healthy Phoebe and so, a few things need to happen first. Infections need more time to fully heal, Phoebe needs more time to regain strength and weight, and we need to keep putting one foot in front of the other and believing that we will get there. 

Today, rather than focus on what lies ahead and the fear that a third transplant evokes, I will choose hope and I will choose joy. It is time to focus on the good. 

Shout it from the rooftops and kick it to the curb. 

Go Phoebe go. 





Wednesday, December 17, 2014

Big day tomorrow



Tomorrow is a big and important day for Phoebe. She has another bone marrow aspirate to see how well her disease has responded to the most recent chemo. The last test showed an increase and we need good news. We really just can't focus on anything else right now. 

Phoebe started chemo on Friday after a ten week break, and she has received six doses of two different drugs since. There are some side effects, but so far all is relatively good. Phoebe is tired and not eating as well as we are used to, but we are not seeing the same moodiness and depression that we did last time on this protocol. The plan is to continue with chemo on Friday and hope that the bone marrow results are good enough to not require any additional drugs. There is a tentative plan to add another drug if the results are not improved. 

There is still a very, very small chance that we may be able to make it home for a few days over the holidays, but we are not expecting this - mostly because by the time we find out if it is a real possibility, flights will be expensive and it will be right before Christmas. In some ways it is easier, safer, and less stressful to stay put. The holiday spirit is alive and well in our little Memphis apartment thanks to Mae and Phoebe - our tree is up (complete with a "monkey angel" on top at Phoebe's request), letters to Santa have been written and Mae and Phoebe are counting down the days. We have driven around and around many Memphis neighbourhoods admiring fancy and extravagant lights and we never get tired of the excited shouts from the back seat. It is not the same without the snow (hard to believe) and friends and family, but we are all together and out of the hospital, so it is as good as it gets right now. 

We are hopeful but also worried, and really just taking things one day at a time. Phoebe and Mae help us to focus on the good and positive because it is hard to focus on the worries when they are around and so joyful. We are thankful for them and for the love and support being sent our way. 




Wednesday, December 10, 2014

Results

Phoebe had her MRI and bone marrow tests on Tuesday. The lesions in her brain are smaller and the inflammation in her brain has improved. There is still healing to be done, but this is good news. Phoebe seems more like herself everyday and she is doing things we didn't think were possible just a month ago. Mae is so happy to have her play mate back and they are often inseparable. To see them play is a beautiful sight.

The bone marrow results are not what we were hoping or praying for, but all hope is not lost. The ALL leukemia is gone, however, the AML is at 16%. Phoebe was originally diagnosed with MLL (multi-lineage leukemia) + Acute Lymphoblastic Leukemia. With this type of disease, it is common for the leukemia to switch lineage, or for one type of leukemia to stay hidden. We are not sure what happened with Phoebe as at the very beginning of all of this there were some "suspicious myeloid cells" that were swept aside and the focus and diagnosis became MLL + ALL. Nevertheless, this is why this disease is so difficult to treat and cure.

It is devastating. There is that word again. It doesn't come close to describing how we feel about this, but it's all I've got. That and terrified. Worried. Heartbroken. Hurt. Helpless. Deflated. Frustrated.

Phoebe, on the other hand, is beautiful, spirited, joyful, energetic, resilient, powerful, brave, strong, feisty. And together we are not giving up.

We are moving forward. Phoebe didn't finish the protocol that brought us here because she became too sick with infections, so now that her many infections appear to be improving, we are continuing with the final doses of chemo. These two types of chemo have proven to be effective against AML and Phoebe's disease has seen very little of them, so we are hopeful. We don't know if we will make it home for Christmas as we had hoped, and right now, if that is a possibility, it is small and should we make it home, it will be for a very short time. Cancer doesn't wait for, or care about Christmas.

We haven't told Mae and Phoebe what is going on and I honestly don't know how we will. Phoebe cries when she goes to the hospital and they both want to go home. We have been in isolation while at the hospital for 9 weeks with no end in sight. This means that we enter and exit through the isolation doors when Phoebe has appointments and avoid all common areas. We see the clinic, the medicine room and if Phoebe has tests and procedures, the isolation rooms in those areas. Phoebe is not allowed to attend  parties, events, crafts, go to the cafeteria or the coffee shop. Phoebe has cleared the infection that put us in isolation, but the bacteria that caused it lives in her gut and so, until that clears, we are trapped. Phoebe misses the St. Jude that she knows and loves and isolation just makes all of this more difficult.

Today, Mae and Phoebe started to pack their suitcases for home. I didn't ask them to do this, they just did. They are talking about building snowmen, seeing their cousins, having sleepovers, decorating their Christmas tree in their house and sleeping in their room with their toys. As hard as we try to recreate home in Memphis, it is just not home. We long for normal, but we are also very aware of how lucky we are. We have met many families on this journey who don't get to tuck their babies into bed each night or complain about the isolation procedures at the hospital. Most of the infant leukemia babies we met and came to love on this journey are now deeply missed. We continue to be blessed with options and chances and Phoebe keeps going. We are still fighting and as long as we are fighting and worrying and complaining about how crappy this is, we are okay because it means that Phoebe is here. Phoebe is here and that is the most important thing.

We are back at St. Jude on Friday for chemo and the plan is to repeat the bone marrow tests next week. Please keep Phoebe in your thoughts and prayers. Please know that your thoughts, prayers, love and support mean the world to us. Thank-you for reading, sharing, and thinking of our family.



Wednesday, December 3, 2014

Slow and steady



The biopsy and "surgery" of Phoebe's sinuses was thankfully very uneventful. The ENT doctor said that it was mainly putting Phoebe to sleep with anesthesia and waking her up again as they didn't find anything that resembled mold in her sinuses and nothing that needed to be removed. All looks good.

They did do a tissue biopsy and it was sent to the lab, but it unfortunately wasn't enough tissue and so they weren't able to run any tests. The pathology results of the mold that was discovered in Phoebe's sneeze are back however, and we hope that this will be enough and another biopsy won't be necessary. 

The results from the sneeze have narrowed down the very specific type of mold responsible for these infections and it is susceptible to the oral antifungal medicine that Phoebe has been receiving. This means that we can say good bye to the second and frankly, awful, IV antifungal. Any kind of fungal
infection is scary, and after a brief look on google today, I learned that some are more terrifying and threatening than others, but I am choosing to focus on the fact that in Phoebe's doctor's words "she is healing beautifully". She really is. 

We are moving forward. Phoebe is improving everyday and it is simply amazing to see how far she has come. She has started to walk again, and although her legs are very shaky and weak, she doesn't let many things hold her back. I am in constant awe of her strength. Today we had a visit from physical therapy and Phoebe happily kicked at soccer balls, bent down to pick things up, walked, and even tried jumping. This therapist was met with smiles and a willingness to play which also warms my heart. For quite some time, Phoebe has screamed and cried her way through hospital visits. There are still quite a lot of screams and cries, but she is coming around. 

We are back at the hospital tomorrow for another bone marrow aspirate and biopsy and an MRI of Phoebe's brain. If Phoebe's behavior is any indication, we expect improvements. She is doing many things that were normal before this long hospital stay, but that we missed while she was very sick. Beautiful things like singing along to the radio, laughing, playing and interacting with Mae, coloring and writing her name, dancing, walking and eating. We have far to go and most of these things are done with shaky and weak little legs and arms, but we are so grateful for these steps forward. There were days in the ICU when we worried that we would never hear Phoebe speak or laugh again. There were times when she slept the day away and we wondered if she would ever recover. Recently we worried that Phoebe wouldn't walk again. There are no words to express our relief, our immense gratitude to Phoebe's incredible medical team, and our pure happiness at this progress. 

This Saturday, I will be running in the St.Jude half marathon (or attempting to do this). I am nervous because of the lack of training I have done, but also excited. Excited to participate in a run for St.Jude. We are so thankful for this wonderful place. 

Please keep Phoebe in your thoughts and prayers tomorrow. 

We believe. 





Wednesday, November 26, 2014

Never a dull moment.

A few days ago, Phoebe sneezed. It was a forceful sneeze, a big sneeze, a sneeze that sent us to the hospital with a tissue filled with all kinds of stuff. There was a chunk of blackish "stuff" in amongst it all that was strange and concerning. So much so that the infectious disease doctors eagerly accepted our tissue of stuff and sent it to the lab for testing.

The doctors have been trying to get a piece of the fungus that has taken up residence in Phoebe's brain and lungs for months. They looked at lung surgery, but thankfully deemed it too invasive. At one point they were ready to biopsy a suspicious lymph node but it has since completely healed. The neurologist wanted a piece of Phoebe's brain lesion had she not shown signs of progress. They had pretty much given up on this quest for tissue, happy to see Phoebe improving, until Phoebe sneezed and out came a suspicious chunk of stuff. 

The lab results show evidence of mold and this prompted a CT scan of Phoebe's sinuses and lungs this morning. 

The lungs look much improved! This is very good news. At one point Phoebe had four large lesions in her lungs. Today, one is so small it is almost undetectable, two are very small, and the largest has decreased in size. 

Phoebe does, however, have a hole in her septum that is visible on the CT. This is the first that we have seen of this as there was no evidence of sinus disease on previous scans. The doctors think that fungus has eroded the cartilage between Phoebe's nostrils and they are worried that there may be more damage. Fungus is invasive and relentless, especially in a person with no immune system. Phoebe's immune system is thankfully recovering but she went many months without. I just can't bring myself to think of invasive fungus and the damage that it can cause. 

On Friday, Phoebe will go to the operating room so that the doctors can biopsy the tissue that is surrounding the hole. Once there, they will remove any other fungus or dead tissue and assess the damage. We hope that because Phoebe's counts are good, that this is a simple biopsy and that any fungus is controlled and limited to the area seen on the CT. We hope they find healthy tissue and signs of a recovering Phoebe.

We hope. We hope. We hope. 

Despite all of this, Phoebe seems okay. She had a long day at the hospital today, but when she is home she is happy. She has taken a few steps on her own, her voice is finally back, she wants to play, and she proudly helped make her big sister a birthday cake yesterday. She also happily played with Mae and her new toys. Tonight she wrote a letter to Santa to ask for a "small trampoline, a monkey, and a purple bow and arrow - oh, and a stroller for my monkey". She obviously has big plans that don't involve fungus and cancer, so we will follow her strong lead. 




Friday, November 21, 2014

More Healing

We are still here. Phoebe is healing and although we have a long road ahead, we have taken many steps forward. We are in a place that seemed impossible just a month ago when Phoebe was in ICU.

We are grateful. 

There are still many uncertainties and we don't have a set plan, but we are doing what we can to get Phoebe well and focusing on the little things. There is a lot of good in these little things and we believe and we hope that they will continue to add up and lead us to a smooth path. 

The little things ... 

We are out of the hospital, and we are all sleeping under the same roof. 

Phoebe's liver is improving and her once brilliant yellow and jaundiced complexion has faded to look like a beautiful tan.

Phoebe is smiling, laughing and she wants to play and do crafts with Mae. This after months of telling her sister to go away, just soothes our weary souls.

We have counts. After a few days with an ANC of zero, Phoebe has now recovered her neutrophils again and today, they are almost in normal range. She is still needing regular platelet and red cell transfusions but these cells are the last to recover and the thought among Phoebe's doctors is that even if they are recovering, they may be busy with infection and the inflammation that comes with that.

Today, Phoebe got out of a chair by herself and attempted to walk. She ended up falling down, but that she tried is a huge accomplishment. She will walk a few steps while holding on to one of us, and she can stand independently. This after being in bed or on the couch for months, after two strokes, and with little legs that are so thin and weak it doesn't seem possible that they could hold her up, is amazing.

We said good bye and good riddance to the feeding tube on Wednesday and Phoebe has been holding her own since then. Eating and enjoying wholesome real food is a part of what makes Phoebe, Phoebe. I often think that she is destined to be a chef because she loves eating and trying new food and she truly savours it. To watch Phoebe eat is a beautiful thing.

Mae is happy. Mae, who turns 6 on Tuesday, has been busy wrapping gifts for Phoebe to open on her birthday. She finds things around the house, wraps them in homemade paper, and hides them. "So Phoebe isn't left out and so she smiles". Mae is our secret weapon. She is Phoebe's healer. She has encouraged her to eat more, to use her left arm that was once completely limp after the stroke, to laugh often, and when Phoebe stands up or tries to walk, it is Mae that cheers the loudest.

Tonight while Mae and Phoebe played Lego together at the hospital, Phoebe leaned towards her big sister and said, "I love you Mae". The smile on Mae's face lit up the room.

We know that we are doing everything we can to get Phoebe well, and we are grateful to Phoebe's doctors for supporting us, listening to us, and for always keeping Phoebe at heart. Phoebe has come very far and overcome many things and that her doctors continue to work to find something that will give us more time, or the cure that we desperately hope for, is a beautiful thing. No one is giving up on our girl.

Today we had a meeting with Phoebe's oncologist, her transplant doctor, her nurse and our quality of life doctor. We have been followed by the quality of life team for some time now and although their title suggests things that we hope we will never have to face, they have been a blessing and a comfort to us. They listen. 

The meeting was overwhelming but also hopeful. We wanted an idea of next steps and we left with short term plans to repeat the bone marrow aspirate in 2 weeks, to continue healing Phoebe's liver and infections, and to possibly start a very low dose of chemo after the aspirate to maintain this remission that has remained miraculously stable in the absence of therapy. We have long term goals of trying to get Phoebe to a place where an innovative third transplant at St. Jude is a possibility, with the hope that this will eventually cure her. This is months and much healing ahead of us and not an option right now because of all that Phoebe still needs to overcome, but she is getting there. We are grateful to still have options, but we are also very aware that what Phoebe needs most right now is time to heal and to be as carefree as possible.

We have hopes and plans to go home for Christmas - this is something that was brought up by Phoebe's doctors today and a goal that we all share. Both chemotherapies that Phoebe received here, drugs that have done wonders for her disease and are part of a protocol that has seen a lot of success here at St.Jude, are not approved by Health Canada for use in children and therefore may not be available to us at home. We plan to give Phoebe one of these medicines to control her disease and while we will do what we can to shout it from the rooftops that we should be able to receive it in Canada, that Phoebe's health is not dependent on another fight with the Canadian government and we can receive it at St. Jude is a blessing that I don't have words to properly express. Thank God for St. Jude. This does mean that a stay at home will most likely be short, or that we will need to return to St. Jude frequently, but many of these plans are still very tentative and depend on Phoebe.

It is the little things and among these little things is Phoebe. Phoebe is a beautiful force. She is mighty and strong and she amazes us everyday. She has a way about her that is impossible to describe. She is wise and most of the time I am certain that she knows things that we don't. She is our fearless leader and we are so incredibly grateful that she is coming back to us.

We are thankful for each and every day.

Go Phoebe go. 









Friday, November 14, 2014

More Home

Three days at "home" and all is well. We are holding Phoebe and Mae tight and just happy to be under the same roof. 

Yesterday, Phoebe had an MRI of her brain and after looking at the images, the neurologist commented that we seem to finally be turning a corner. The lesions or spots on Phoebe's brain are smaller, but the inflammation is still very much there. We are going to repeat the MRI next week and the hope is to see more signs that things are improving, resolving, and healing. The EEG that was done earlier this week is also much improved.  

There was a tentative plan to give Phoebe another granulocyte transfusion yesterday but between the inflammation in the brain and Phoebe's own cells holding their own, although low, the decision was made to wait and see and hope that Phoebe's own cells continue to be enough. 

In other news, Phoebe is eating more and we have started to wean her from the feeding tube - she loves food and hates the tube, so I don't think this will take very long. She is happier. She is awake more during the day; she sleeps well at night. Her voice is still raspy and she is very hard to hear, but she tries so hard. Mae understands Phoebe well and has started to act as her interpreter - she happily leans in to listen to Phoebe's whisper and passes on what she hears. Phoebe smiles at this and it settles my weary heart to see them together. Mae has seen and heard many things that no big sister should ever see or hear, and she needs this closeness with her sister. 

The goal for this weekend is to be at home when not at St.Jude, to sleep in our own beds, and to encourage Phoebe to walk. She hasn't walked a single step in over two months, but like everything else, I am sure she will surprise us with her determination and strength. Amazing Phoebe Rose.