On October 26th, 2010, at 9 weeks old, Phoebe Rose was diagnosed with high risk MLL + Infantile Leukemia. On November 18th 2015 , she took her last breath. This is her story of hope and love in the face of cancer and despair. Phoebe always brought the joy and continues to inspire us to make a difference. It is best read from the beginning. Thank-you for visiting.

Tuesday, December 30, 2014

So long 2014 ...



We are home.

All is well. We had a few rough days when we arrived due to chemo related bladder retention and pure exhaustion for Phoebe, but today she is much improved. It is nice to be home.

We have had two trips to CHEO for labs since we arrived back on the 23rd, and all looks good. Phoebe still has elevated liver function, she still needs a platelet transfusion once a week, but all is relatively well. 

When at home, Phoebe has been climbing stairs, eating well, trying to keep up with her big sister, and just getting better. She is not herself and tires easily, but she is leaps and bounds from where she was two months ago.

Much improved. 

We have been preparing our house and attempting to prepare our lives for more and many months away. It is easier said than done. 

Mae has been soaking up this time - spending as much time as she can with her cousins and her toys. She is so happy. 

We return to Memphis in the new year and have appointments at St.Jude on the 5th. We aren't sure what to expect - we know there will be more chemo, a possible transplant on the horizon, and a lot of questions. We also know that there may be no answers and no clear path. If we stop treatment now, barring a miracle, Phoebe's disease that has returned in one form or another three heartbreaking times, will most likely return again. If we choose to stay home, we are out of options. We have been out of options at home, excluding palliative care, for three years. If we push forward and choose aggressive treatment to treat a terrible and exhaustingly aggressive disease, it could all prove to be too much. When will it be enough? Will this third transplant be what finally takes? With all that we have, we hope so. We need it to be so. 

We are so grateful to still have options. To still have hope, but this is so very hard. 

We see Phoebe. She is finally gaining strength and energy. She is eating and playing. We watch her as she gets better and we know that we are about to hold her as she endures things that would cause most people to completely break down. Then we think; she has persevered, she is strong, we have come so far, she is unstoppable - but we worry, we worry all the time. What if it will prove to be too much? The days and weeks that we spent with Phoebe in the ICU were terrifying and eye opening and we know that having Phoebe here today is a blessing and a miracle. It could easily have been very different. 

So, on the Eve of the new year, I find myself exhausted and feeling a bit desperate. Please let 2015 be our year. Please give us a break and time to breathe and heal and live without fear. Please give us time to pick up the pieces of our broken lives. Please let any further treatment be what Phoebe needs to finally be rid of this. 

2014 brought us remission, we glimpsed a beautiful life without cancer, hope for the future, and growth, but we also saw relapse, more cancer, a struggle to access treatment not available in Canada, a trip to Colorado for innovative therapy that is only NOW available in Toronto, six months later (we could never have waited), and a return to St.Jude for more treatment. 2014 shook us to the core with fungal infections, brain lesions, strokes, seizures, ICU, more cancer, and too many complications to list. We will probably never recover from the ugliness and pure heart ache of 2014, but we will continue to move forward because that is what we do. 

We move forward. 

We are closing out the year with Phoebe in remission, she is healing from her infections, she is gaining strength. Phoebe is here, with a beautiful and ferocious spirit, she is here, and we will
always be full of HOPE. 

We don't know what 2015 will bring, but we will face it together. We will continue to move forward with hope and with gratitude - we get to take these steps forward and for that, we are thankful, 

Thank-you for continuing to read Phoebe's story, for supporting us and holding us up. Each donation, comment, message, prayer, thought, letter, gift, and word of support means so much to us. We can't travel this road alone and we are forever grateful to all of you who continue to hold Phoebe close.

Happy new year.

"Hope smiles from the threshold of the year to come, whispering 'it will be happier'"  Alfred Tennyson 









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.


Wednesday, November 12, 2014

Home Again

We are home again. This time hopefully for more than two days. We are back at the hospital tomorrow for a repeat EEG, blood work, an IV medicine, and a clinic visit. It will be a long day, but as long as it ends with us at home, we are happy. It is the little things.

Phoebe is okay. She is still climbing mountains and she is traumatized by all that has happened over the past two months - when we ask her how she feels when she is in the hospital, she says "scared". I wish I could make all of this better. Although not herself, she is much happier at home. Since she arrived tonight, we have seen many smiles. As I write this, she is watching her favourite, Peppa Pig, eating her favourite shepherds pie, and gigging often.

We hope for more days at home. We hope for progress and improvement, but we would be soothed by stability. We are all weary and exhausted and most days I feel like I am one problem away from completely losing my mind.

Thankfully, many of Phoebe's issues are resolving or improving. Her liver is beginning to improve,  her kidney function is stable, her lungs look to be on the mend, and she is now on an anti-seizure medicine that hopefully will not result in the extreme sadness that we saw with the previous medication. She is starting to eat by mouth again, albeit very slowly. Her leukemia is "stable" and only present at a low level although she is still needing regular blood and platelet transfusions. She will have a repeat MRI on Friday to access the swelling that was seen in her brain on the last scan.

We are thankful for the army of people that we have looking after Phoebe. Many doctors at St.Jude are aware of and involved in the care of Phoebe and her many issues. The doctor who is on service this week commented that it takes a village to raise and care for a child, and that Phoebe's village has now grown into a town; a town filled with smart, caring, determined, compassionate and kind people. We are very grateful.

We are also grateful for the army of support that we receive from home. That we are all together in Memphis is the greatest gift, but something that couldn't happen without help. I have been able to work very little since Phoebe was diagnosed and Jon recently put work aside and his business on hold to travel with us to Denver and now Memphis. It is hard and we struggle, but we will never leave Phoebe's side. Keeping our family together through all of this is the most important thing right now.

There are many events being held for Phoebe in Ottawa and many people involved. We are forever grateful for this help. The time that we have together as a family is precious.

A special thank-you to RJW Gem Campbell Stone Masons. Jon was employed by RJW last winter and worked on the restoration of the West Block of Parliament Hill. He was welcomed with open arms into this close knit and warm family and it is an experience that he cherishes. He has maintained many friendships and this group of people has been a wonderful source of support, not only for our family,  but for childhood cancer initiatives as a whole. They supported Jon when he jumped in the Ottawa river last winter and since our arrival in Memphis, they have held weekly 50/50 draws for Phoebe. Thank-you.

A special thank-you to Judy Hum Delaney, the Ottawa Foodie Girlz and Fiazza Fresh Fired Pizza. These amazing ladies are holding a fundraiser for Phoebe at Fiazza Fresh Fired Pizza on November 25th (which is also Mae's birthday) from 11-9pm. 20% of sales from the event will go to help Phoebe and there will also be great prizes up for grabs. Thank-you to everyone involved in this amazing day. For more information, please see this link

A special thank-you to Pauline and fellow musicians. Pauline is organizing a classical music benefit concert for Phoebe this Saturday November 15th at McKay St. United Church. It will be a beautiful day of music. For more information, please see this link   Thank-you to Metro for helping to spread the word.

A special thank-you to Manor Park School, community and friends. They are holding an indoor garage sale and bake sale fundraiser for Phoebe in the school gym on November 22nd. Manor Park, you amaze us and we miss you. For more information, please visit this link

We wish we could thank everyone in person, and I know that I am just scratching the surface when it comes to thanks. We are often speechless when it comes to the kindness and generosity that our town shows Phoebe and we promise to do all that we can to pay this incredible kindness forward. 






Monday, November 10, 2014

More ICU

We went home on Saturday morning. Almost as soon as Phoebe arrived home and got settled on the couch, she asked her Daddy to make her Shephards pie. She ate, for the first time in a month and she was happy. Sunday brought more of the same. We were still at the hospital for blood work and medicines on both days, but when Phoebe was at home, she shined. On Sunday, she requested tacos and insisted on making her own. She refused to use her fingers to make things easier. This was suggested because she is weak from being in a hospital bed for a month, but no, "I will use a fork and do it myself", she said. She didn't eat a lot, but she tried and she was happy. There was Phoebe - and more than a glimpse, she was bright and shining and very much herself at home.

We were all happy. Mae was glowing and making plans for evening walks and more dinners.

This morning we arrived at the hospital for early appointments. The second (literally) we walked in the door, Phoebe began to shake. It was subtle and while it was happening, she spoke to us. It stopped, but an hour later it started again. Phoebe's body began to shake and tremble and as it did, she still spoke to us and was aware. In fact, she ate her breakfast while all of this was happening and even sent me to Starbucks to get "the milk that I like". She also told us that she couldn't stop the shaking. The neurologist came in and because Phoebe was so alert, he said he was "98% sure it isn't a seizure". He ordered an EEG just in case.

The EEG showed seizure activity. Lots of it. Phoebe continued to shake for over an hour and even when she stopped shaking the EEG still picked up the same seizure activity. 

We are now in the ICU and Phoebe will be connected to the EEG for the next 24 hours. She has been restarted on anti-seizure medication and is being monitored and watched closely. She is stable and calm and we hope she has stopped having seizures. We don't know how long we will be here and we don't know what all of this means. 

Leukemia is a monster and it can hide in the central nervous system. Because of this, chemotherapy is injected into the CNS to treat or prevent disease. Phoebe had a lumbar puncture with methotrexate chemo on Friday. Methotrexate is known to cause neuro-toxicity and seizures and a drug level that was drawn today shows the drug is still in Phoebe's system. This could be the cause of all of this or the cause could be the inflammation in Phoebe's brain. It could be both. Regardless, I hate this drug so much. In fact, lately I feel like screaming about most of the drugs that Phoebe receives. The anti-seizure medicine that can cause severe depression. The chemotherapy drugs that cause stroke, heart disease, secondary cancers, seizures and on and on it goes. Is it too much to ask for medicines that we give to children to be developed with children in mind and safe? Is it crazy to think that these medicines should heal instead of set these kids up for a life time of secondary disease and side effects?

We are seeing the effects of these medicines every day and we are taking things one day at a time. We are holding on to the sweet memories of the two days we spent at home with the hope that we will be there again soon. We will. We have to believe we will or we might just break down. 

Some good news and always a reason to hope. Phoebe's bone marrow MRD results are in and the level of leukemia is lower than on previous tests. Despite not being on treatment for five weeks, Phoebe is holding her own and "maintaining" a very low level of disease. 

We love you Phoebe Rose. 

Here is Phoebe and her beautiful smile at home. 







Friday, November 7, 2014

Phoebe had her CT scan, MRI and bone marrow aspirate today. When the oncologist came to deliver some of the results, she was accompanied by the neurologist. My heart sank. We haven't seen the neurologist lately because clinically, Phoebe has been improving since her stroke. We don't have the bone marrow results yet, and the CT scan shows improvement to the nodules in Phoebe's lungs, but the MRI shows a lot of swelling in and around the brain. This inflammatory response is secondary to the infection and they are not sure what to do. This is Phoebe's brain and they are not sure what to do. There are no right answers. They can give steroids to help with the inflammation, but because Phoebe has a fungal infection, they would rather not and so we are watching and waiting and regrouping on Monday to see how Phoebe is doing. They are encouraged because Phoebe has improved since the stroke and she appears to continue to do so. There is hope that this is a healing process that will resolve with time, but it is still terrifying. The neurologist was talking about Phoebe's brain and the changes that they see and then he said, "God willing if she survives this, she may have some cognitive impairment". I was at a loss for words. I often struggle with how to write in a way that truly tells of the fear we experience each day or the odds that we are up against, so I am sharing his words because they are clear.

This is our reality. This is the fear and desperation and soul crushing uncertainty that we live with each day.

We brought Phoebe into the hospital for a fever almost 40 days ago. Just a fever we thought, she will be home in a few days. Just treat the source of the fever we thought so that we can get back to treating the leukemia. Since then, Phoebe has suffered two strokes causing slurred speech and weakness on her left side, she has had a blood infection, a fungal infection in her lungs and her brain, and an infection in her belly. She has been in the ICU twice for two separate issues. She is now fed through a feeding tube. She has almost completely lost her voice due to swelling in her throat and vocal chords. She cannot sit up by herself. She is too weak to walk. Her liver is angry and irritated causing her skin and the whites of her eyes to turn yellow with jaundice. It is so hard to believe that all of this has happened in such a short time. Phoebe is a very sick little girl, but ... she is getting better.

There is talk of sending us home tomorrow. We hope to have finally seen the end of the almost 40 day fever stretch. Phoebe is tolerating her tube feeds and drinking hot chocolate and water by herself (the hot chocolate is thanks to the volunteers who come by each night to offer it and coffee). She is awake more often and she smiles at least once a day. She is determined. Her voice is so weak and at times she is very hard to understand, but she will repeat herself as many times as it takes to get her point across. She is trying so hard.

Tomorrow if all goes as planned, we will go home. We will go home with a feeding pump, an arsenal of medications, an IV pole, supplies for Phoebe's PICC line, and Phoebe. We will go home with Phoebe. Phoebe will get to sleep in her own bed and we will get to sleep under the same roof. It is the little things.

Hope.





Thursday, November 6, 2014

Cells and Lego

We have cells. My cells. Phoebe's cells. Lots of cells. Phoebe's ANC (absolute neutrophil count) was 8900 yesterday morning. This is high and most of these cells are from the granulocyte infusion that Phoebe received on Tuesday, but some of them are also her own recovering cells. Phoebe's own cells are here. Her immune system is finally starting to recover after all of these infections and treatment. We are crawling out of the dark tunnel that we have called home for over a month.

We desperately need these cells to get Phoebe well and they have a big job to do. Phoebe's last scans showed that she had an infection in her brain and her lungs in addition to the infection that was in her belly and blood.

There are wonderful signs that Phoebe is beginning to recover. She is tolerating her tube feeds very well, her belly is no longer incredibly distended, her liver looks to be improving although very slowly, she is moving her arm that was once completely limp from the stroke, and her speech; although her voice is weak, her words are clear, and at last check (Jon stayed the night last night), Phoebe's fevers had improved. She is still needing regular platelet and blood transfusions and we have a long way to go, but progress is good.

The immune system is a beautiful thing, but as amazing as the news about count recovery is, almost more so is that yesterday, Phoebe asked to play Lego. She smiled and she asked to play Lego. Her voice is still very weak and more like a whisper and her body is tired, but yesterday she leaned on her bed and she played and that is truly the best news. Phoebe hasn't asked to do anything in over 3 weeks. She has been in her bed and in the hospital for almost 40 days. We have missed her and although she is not yet back, we believe that she is on her way.

Phoebe will go for her follow up scans tomorrow morning. She will have a CT of her pelvis, lungs, and sinuses, an MRI of her brain, a bone marrow biopsy and a lumbar puncture. All of these tests will be looking for disease and infection. To be looking for these things in so many places is terrifying. We need good news. Plain and simple, we need it.

In the meantime, we are moving forward, grateful for the small steps that Phoebe is making each day and hopeful that the worst is behind us. We are not sure what happens next, but right now we are just happy for this progress and anxious for it to continue. We will go to sleep tonight dreaming of healthy recovering and feisty fighting cells. Cells going to work on Phoebe's many infections and disease. Cells bringing light to where there was once only darkness. Cells healing our sweet girl from the inside out. We will go to sleep tonight dreaming of Phoebe and Mae; imagining them running the halls of St. Jude so that they can once again run the halls of Manor Park school.

Hope.

Go Phoebe go.

Saturday, November 1, 2014

So long ICU

We are still here. Tonight we moved out of the ICU and back onto the regular ward. There are still so many unanswered questions. The rash is back. Phoebe is still having fevers, and lately they are very high. This could be a reaction to the granulocytes or it could be an infection. Every single test that has been sent looking for viruses, fungus, and bacteria, has been negative, but we know because of MRI and CT scans, that Phoebe has something in her lungs, that she has spots on her brain and that she had bacteria in her blood. The last positive blood culture was many weeks ago on October the 4th.

We have been in the hospital and Phoebe has been having fevers for 32 days. 

There have been some improvements - we are out of the ICU, Phoebe's liver numbers are very, very slowly starting to improve, the infection in Phoebe's stomach has cleared and so we have restarted feeds through a new feeding tube that goes directly into her small bowel. Her stomach is still healing, but she needs nutrition so this way we are bypassing the stomach, allowing it to heal, and still feeding Phoebe. It also unfortunately means a new tube in her nose. Phoebe was very small to begin with, but today she is tiny. She is tiny and she looks sick. She hasn't gotten out of bed in two weeks and I honestly don't know if her little legs could hold her. She is weak, tired, and every day she endures so much to get better. Nutrition will help and so this is a big step forward. 

There have been many darks moments over the past 32 days, but there is always that light. The hope. The belief that all will be okay. 

Yesterday and today, Phoebe smiled and she laughed and although it was not a typical Phoebe laugh - the kind that she used to do with her whole self - it was amazing. The best part of this was that she did it for Mae. She usually only smiles for her Daddy. Since these smiles, Mae has spent a lot of time talking about "my sister Phoebe's beautiful smile" and how we can get Phoebe to smile for the doctors. After a lot of thought, Mae has decided that the doctors will need to hide if they want to see the famous Phoebe smile. "I know she won't smile if she sees them, so they will need to stay hidden - they can hide behind the curtain". Sweet Mae. 

Perhaps the most heart breaking part of all of this, is how it affects Mae. Mae never comes to the hospital empty handed. Each day she brings something with her to "make Phoebe smile". She shows it to Phoebe with the hope that it will in turn show her more of "her Phoebe". She is determined to bring her Phoebe back. Almost as soon as Phoebe smiled, Mae was outside her room, making sure that the doctors and nurses were aware of this important milestone. It is so important to Mae, that they see Phoebe as she does, as we all do - as bright and shining and feisty Phoebe Rose. She tells everyone who will listen about Phoebe. She tells the nurses, doctors, people in line at the coffee shop, the staff in the mail room - all about her sister Phoebe who loves to play and run. She tells them about when Phoebe would pinch and chase her with a look of pure longing on her little face. What Mae wouldn't do to be chased and annoyed by her little sister. She talks about Phoebe and she asks when Phoebe will be better. She worries and wonders if Phoebe will ever get better and with each question and worry, my heart just hurts. None of this is fair, but this, this is the most cruel.

Yesterday I harvested another unit of granulocytes and Phoebe received them all late last night and early this morning. Unlike the last "harvest" that was split and given on two separate days, the doctors decided to give all of these cells at once. I am able to give just 6 times in 6 months, so the plan is to give Phoebe as many cells as we can over the next few weeks to fight these infections, if this is what she continues to need.

The real hope is that Phoebe's own healthy cells will begin to recover and do the work of these temporary granulocytes so that we can move forward. There have been signs of count recovery and although the doctors are hesitant to say that we are turning a corner, I believe we are on our way. 

Hope. 





 

Tuesday, October 28, 2014

Granulocytes In

Phoebe received her first dose of granulocytes late last night. They were transfused into her PICC line from 11pm until 3 in the morning.

It was a long night. 

The ICU attending doctor sat outside the room watching the monitor as the cells went in. We were told by a few doctors to expect the worst. High fevers, breathing difficulties, and that Phoebe may need a ventilator. We tried to emotionally prepare for the possibility that Phoebe would need breathing support, and be put on a ventilator. We were and are terrified. How does someone prepare to see their child hooked up to a breathing machine? Thankfully, Phoebe sailed through the transfusion and required very little support. 

This morning, Phoebe's ANC is 2600 - that is 2600 cells that are fighting infection. Things are looking up. These cells will only last in Phoebe's body for two days at most, so we need her own immune system to recover for her to truly heal. To help her through and because the first dose of cells was so well tolerated, she will receive another dose today. 

We are seeing some improvements, but Phoebe is still very sick. We are hopeful. Always hopeful, but anxious for a day without fevers. 





Sunday, October 26, 2014

Four Years ...

Four years ago today we were told that Phoebe has leukemia. I knew that something was wrong and had visited the emergency room at CHEO multiple times only to be sent home with a "healthy baby", a hand-out on fevers, and a label of anxious new mother. I wish they had taken me seriously and run a simple blood test. 

Although I knew something was wrong, nothing could have prepared me for that day. The thought that my child would have cancer never crossed my mind. 

That day seems so far away today as I write this from the ICU at St. Jude. Back then we were unaware of the road we were about to take, the shockingly low survival rate for infant leukemia, the harsh treatment, the side effects, the lack of funding, the absence of new medicines and funding for research to find cures. We didn't know about the lack of advances in the treatment of this disease and the far too many unanswered questions. We just wanted our baby well and had no idea what we would need to go through to achieve this. 

Since that day, we have watched Phoebe endure more than most of us will in a lifetime. In fact, she endured more today than most of us will in a lifetime. We have struggled in every way a family like ours can struggle. We have fought for treatment. We have had to relocate to Memphis and St. Jude multiple times. We exhausted all treatment options in Canada in 2011 and have been unable to access anything new at home since then. We have fought the Ontario government to gain access to a targeted therapy that was only available in the US. Thanks to the hard work and determination of an amazing community combined with an understanding and sympathetic Health Minister, we were able to receive this treatment, but the long wait to receive it caused Phoebe's disease to spread. The effects of this wait and a lack of availability for these treatments in Canada resonates today as we watch Phoebe fight for her life in the ICU. If we had been able to start treatment as soon as Phoebe relapsed. If this treatment had been available in Canada or if Canada had a system in place to allow families to access out of country clinical trials, we would have been months ahead of this disease. Phoebe would not have been without an immune system for a month before starting this most recent treatment. We probably wouldn't be in the place we are in today. If. If. If. 

It doesn't help Phoebe to look back and wonder if all of this could have been avoided, but we can work to make change, and part of that change is awareness and sharing Phoebe's story.

Today, Phoebe is still in the ICU. We have seen some improvement but there are still so many unanswered questions. Each day we watch her bilirubin climb, her belly swell, and her fevers continue. She still has no immune system and so nothing to fight the multitude of infections that we know she has. She is on so many antibiotics and antifungal medicines that it is hard to know what is causing what and at times it feels like we are spiraling out of control. We are weighing impossible risks versus hopeful benefits and there are no right answers. At times there are no answers at all. 

We are scaling back on some of the antibiotics and antifungal medicines to help Phoebe's liver and tomorrow, Phoebe will receive a boost of granulocytes - these are the cells that we desperately need as they fight infection. I will go to the donor room at St. Jude and give my cells, and later in the day, they will be given to Phoebe. This will make Phoebe very sick. Sicker than she has been because these cells will go to the many infections that Phoebe has, but the hope is that although she will probably get worse, she will hopefully also get better. We need Phoebe's own immune system to recover so this is a temporary fix, but we are hopeful that it will carry us until we see count recovery. 

To everyone who has been traveling with us on this journey, thank-you. We have been blessed with an army of support and love and for this we are so grateful. If love could cure cancer we would all be at home and safe in our beds. 

It has been a long and very hard road, and sometimes it seems impossible, but when I think back to the past four years, I remember more joy than sadness. When I think back I see feisty Phoebe and I am filled with hope.

We have come so far. 





Thursday, October 23, 2014

Phoebe

Phoebe is in the ICU. Yesterday evening she started having difficulty breathing and  she seemed to be in a lot of pain. The ICU doctor came to check on her and he ran some extra blood tests. The tests showed that Phoebe has lactic-acidosis - her blood is incredibly and critically acidic. We were moved quickly and the amazing team in the ICU got to work to help Phoebe breath easier.

This morning, her labs have improved. She is breathing easier and not as rapidly and she is now on blow-by oxygen rather than a mask, but there are still so many things going on. 

Phoebe's liver is very sick, she has an infection in her stomach, she is still having fevers, and she is struggling. They are not sure what has caused this most recent complication, but are working hard to figure it out. 

No one wants to be in the ICU with their child, but this close monitoring is what Phoebe needs right now and there is comfort in the careful and very attentive care that Phoebe is receiving. They are doing everything they can. 

Not all of the bone marrow results are in, but what we have from the aspirate shows that the level of leukemia is the same. This is after not receiving treatment for a month. With everything else that is going on, this is good news. Her disease, although it is still there at a low level, appears to be controlled. 

We are overwhelmed, anxious, emotional, desperate, and my heart just aches for Phoebe. We are taking things one hour at a time, and every tiny step forward, every bit of progress, is a victory.

Last night when we arrived in the ICU, Phoebe was wheeled into the room and the nurses got to work - hooking her up to the monitor, an oxygen mask, they inserted an NG tube (because Phoebe pulled her last one), and they put in a catheter. All of this was done while we spoke to the doctor about the many terrifying possibilities including a chance that Phoebe may need to be put on a ventilator. Phoebe didn't make a sound. I felt desperate. I just wanted to hear her fuss and see her fight, but there was nothing. 

This morning, she pulled off her oxygen mask, attempted to pull out the feeding tube, and although her voice is very weak and at times she is difficult to understand, she told the doctor that she wants "the tubie in my pull-up out". She is sleepy and not herself, but that feisty and fierce spirit, it is there. 

Please continue to keep our sweet Phoebe in your thoughts and prayers. 



Tuesday, October 21, 2014

Tomorrow

We hoped for a peaceful weekend, and on Saturday we seemed to be turning a corner. The pathologists reported seeing some monocytes in Phoebe's blood - these are often the first sign that the bone marrow is recovering, and the doctor noted that although Phoebe's temperature was still high, she had been without a very high fever for 24 hours.

On Sunday, the monocytes were gone and to add to the confusion, Phoebe started to develop a rash that now covers most, if not all, of her body. The rash seemed to bring back the high fevers and they have persisted since and are at the highest they have been.

It is a rollercoaster. Bright and early Monday morning we had a visit from the surgical team. After speaking with them and going over the many risks, we decided not to move forward with the surgery. Our days are a long drawn out conversation about risk and benefit and on Monday, the risks far outweighed the benefits. Phoebe still has no immune system. She has ongoing issues with her liver and the clotting factors in her blood. She has an infection in her belly and something in her lung. She is weak and tired. The surgeon was blunt and to the point and he said many things that were incredibly difficult to hear, but we needed to hear them. We just couldn't put Phoebe through something that had the potential to take her from us. We feel overwhelmed and confused and desperate but also relieved. It just didn't feel right and our talk with the surgeon only clarified that. Today, the doctors are still trying to fix the clotting factors and so it is clear that we made the right decision. I believe that this is Phoebe's way of telling us that yesterday was not the right time for the surgery. She is telling us, that she needs more time to heal. If the surgery is deemed necessary for her overall healing, we will revisit it when (not if) Phoebe is feeling better.

Because of the issues with the clotting factors in Phoebe's blood and the persistent fevers, the bone marrow tests and skin biopsy were also put off - first to today, and now until tomorrow.

We are anxious for answers. The bone marrow results and skin biopsy will hopefully help to guide us onto a smoother path. 

Today, Phoebe sat up in her bed to play on her Granny's IPad - she seems more comfortable, a tiny bit less irritable, and she has even had some water to drink. The liver numbers that have been steadily climbing over the past two weeks, have now started to come down - they are still very high and falling very slowing but they are coming down. Today the monocytes were back and we are hopeful that they are here to stay.

The persistent and high fevers are incredibly worrisome and scary, and not knowing exactly what is causing them and how to treat it makes them more so. We hope for answers. We hope to turn a corner, and we hope for relief and healing for Phoebe.

We will try again tomorrow.

“Courage doesn't always roar. Sometimes courage is the little voice at the end of the day that says I'll try again tomorrow.” Mary Anne Radmacher

Friday, October 17, 2014

Fresh air


Yesterday, Phoebe had an MRI of her brain and a CT scan of her belly, lungs and pelvis. There once was a time when writing something like that down was difficult. Today, all of this just seems normal although I know it is the farthest thing from that. The last two weeks have been some of the hardest weeks we have ever had and each day brings new challenges, questions, worries and fears. We are taking things one day at a time.

The MRI shows improvement. This is good. The medicine that was helping with this has since been stopped however, and the doctors are discussing if they need to start it again to optimize Phoebe's recovery. The reason it was stopped is because it can suppress the bone marrow and we desperately need Phoebe's bone marrow to recover. Each day is a long discussion of risk versus benefit and there are no clear answers. The CT scan shows that the spots on Phoebe's lungs that the doctors think are fungus, are bigger and overall her lungs look worse. This is not good news, especially considering that Phoebe is being treated for a fungal infection with the best medicines that are available. The doctors are all putting their heads together and the surgeons have also looked at the scans and they have weighed risk versus benefit and decided that the best way to give Phoebe a chance to beat this is to go in surgically to remove one of the lesions. They will be unable to remove both as it will simply be too dangerous and too invasive for Phoebe. The lesions, or spots, are not on the outside of the lungs, rather they are close to the heart, which makes all of this more complicated. As usual, Phoebe is taking the long and hard road.

The surgery is tentatively scheduled for Monday. It is major surgery and we are completely overwhelmed, worried and scared, but we are also hopeful that once completed, Phoebe will have one less burden standing in her way to a complete recovery. We will also finally know exactly what these spots are and hopefully be able to tailor treatment.

Phoebe is doing okay. She is sleeping most of the day and when she is up, she is not interested in doing very much. Today we were able to get outside for a walk around the hospital grounds which was nice for all of us and Phoebe seemed to enjoy it. Each time we stopped to look at something, she told me to keep walking but when we started walking back to the hospital, she cried that she wanted to go home. I think she thought we were walking home like we used to do. One day we will.

We have small victories each day. Today,we got out for a walk, we saw a tiny decrease in Phoebe's liver numbers, and we have a tentative plan to move forward. These little things and Phoebe helps us put one foot in front of the other.

We hope this weekend will bring rest and recovery for Phoebe. We hope to see some count recovery and we would love to see some smiles. Each day we wake up and anxiously look at Phoebe's labs, hoping for signs of recovery - looking for the strong, healthy and mighty cells that we believe are there. We need them to help Phoebe fight all of these battles. We hope this weekend brings some relief for Phoebe and some help in this fight.

Yesterday evening we spent a lot of time talking with Phoebe's doctor about all that has been going on. We went over all of the test results and at times I felt like I couldn't catch my breath. At the end of the discussion, and after hearing all that stands in Phoebe's way, he said "this is not a hopeless situation". He then went over everything again, this time starting with and focusing on all that Phoebe has done. He talked about her remission, the improved MRI, the strength we are seeing in her left arm after the stroke, and the pure and mighty strength that is Phoebe. Hope is a beautiful thing and although I wish didn't have to cling to it with everything we have, I am so thankful that it is shared.

Please keep our sweet and feisty Phoebe in your thoughts and prayers.

We believe. 

Here is Phoebe, outside for the first time in over two weeks. 




Wednesday, October 15, 2014

Two weeks

Today marks two weeks in isolation and in the hospital for Phoebe. When we arrived with a fever two weeks ago, we never imagined that we would still be here and that so many things would be happening. We never imagined that so many things would be going wrong.

Phoebe has had countless fevers over the past 4 years. Most of the time we would find an infection of some kind, treat it, and Phoebe would be home or be better within 48 hours. Sometimes nothing was ever found to be the cause, but she would still be better within a few days. This is not like that at all. In fact, despite all that she has been through, I can't remember a time when Phoebe has been as sick as she is today. It feels like just as some things begin to fall into place, other things fall apart. We are seeing improvements following the stroke, but Phoebe is still having fevers and she is just not better.

I hesitate to write all of this down because, to be honest, most of the time, I am writing through tears and it is just so hard. I appreciate everyone who continues to read and follow and pray for Phoebe.

Today all of Phoebe's doctors, and there are now many, sat down to discuss Phoebe's many issues. They have decided to make a few changes with the hope that it will help Phoebe recover from these infections while minimizing the side effects from all of the medications. Phoebe is still having fevers, they seem to be less frequent, but they are still very much there. She has inflammation in her gut. Her liver is showing signs of distress that has yet to improve. She is miserable, sad, and depressed. She is still neutropenic with no white blood cells in sight, and today she required another blood and platelet transfusion. For some perspective - most people have at least 150 platelets in their blood and this morning, Phoebe had 9. Most people have a hemoglobin of around 12, today Phoebe's was 5.8. These are critically low levels and without the help of blood donors, we would not be able to fight the many problems and issues we are fighting. We simply wouldn't have a chance. To all of you out there in the world who donate blood and platelets, thank-you.

The doctors are trying everything they can and for this we are grateful. There are no clear answers right now, no right path to take, and there is no one that can tell us what will happen. We can only surround Phoebe with as much love as possible and hope that things will start to improve. Phoebe has shown us over and over again that anything is possible, and we will always believe in her. She is amazing.

Please continue to keep Phoebe in your thoughts and prayers. Tomorrow she will have a repeat MRI and CT scan to monitor the progress of the infections that were seen on previous scans.

Monday, October 13, 2014

Thanksgiving

We are counting our blessings. 

We are hanging on and although we have had many dark days lately, days filled with worry and fear and sadness, we have glimpsed the light at the end of this tunnel and we are clinging to the hope that we see in it.

In honour of thanksgiving - this post is for all we are thankful for. Despite our struggles, there is always something to be thankful for.

Above all else, we are thankful for Mae and Phoebe. 

We are thankful to be here at St.Jude and for each and every person both here and away who has cared for Phoebe. We truly have been blessed with an amazing medical team and as Phoebe gets more complicated, this team just keeps getting bigger. Today Phoebe saw her leukemia and infectious disease doctors and nurses, but she also saw physical therapy, music therapy, speech therapy, child life, and psychology. She is more than the disease that brought us here and the focus on getting her back and better is strong and determined. Phoebe is not happy about all of these visitors , but for us, they represent hope. Among these therapists are people who, years ago, first helped to teach Phoebe to stand and bear weight on her legs, to walk, talk and eat. 

We are thankful for medicine, science and research. Phoebe's leukemia has responded to the treatment - or the amount of treatment she has received as we still have yet to finish the course. Under a microscope, no leukemia was detected. This means that technically, Phoebe is in remission. The more sensitive tests have detected leukemia at a low level but we are making progress and this response is a much needed and big step forward. 

We are thankful to have the chance to continue to fight this disease again and for the time that this gives us. 

Phoebe is still struggling with many things and her body is tired, but there are many people working to help her get better and we are seeing progress. She is still having fevers but they are less frequent and the marker for infection in her blood is slowly and consistently coming down. We still have very far to go, but we are making progress.

We are thankful for progress. 

We are thankful for Phoebe's strength, her spirit, and her stubborn determination. She has now pulled out her feeding tube twice in two days. Although we are not happy about this, how she has done it has given us a beautiful glimpse of feisty Phoebe. Last night she asked her Daddy to go and get her a glass of milk, knowing that he would jump at this because we are desperate for her to eat. When he returned, she was holding the tube in her little hand. The night before, she carefully and quietly pulled off all of the stickers and bandages that were on her body. She pulled off the leads for her heart monitor, the sticker on her toe that measures her oxygen saturation, and the band aids from former IV lines ... and then she carefully pulled off the stickers on her face and out came her feeding tube. 

Today the doctors were discussing how to get the feeding tube back in - we need it in to give important medicines that Phoebe refuses to take by mouth, and for much needed nutrition. After discussing how to do this, the consensus was that Phoebe is just too smart for all of us and the tube can stay out for 24 hours to see how she does. Phoebe has told us that she would like to try to eat, and so we are listening to her. 

We are thankful for family and patient centered care and for doctors and nurses who take the time to listen and hear us. 

We are thankful for family and friends and for the kindness of strangers. We couldn't do this without the help and support and love that we receive from these wonderful people. This weekend was not a typical thanksgiving but we did get a brief glimpse and hugs from family and Mae was so happy to be briefly united with her cousins. 

We are thankful for time. Right now that is time to heal and rest and recover. 

We are thankful for all of this and so much more.

Happy Thanksgiving Canada.

Be thankful. 








Saturday, October 11, 2014

Just keep swimming

A short update. Phoebe's MRI looks better. The spots are still there but according to the neurologist there is improvement. We are anxiously waiting for bone marrow results and we should know those on Monday. 

There is a lot going on and it is overwhelming and so difficult. There are still no clear answers as to why Phoebe is so sick. All of the tests sent for viruses and fungus have so far come back negative, but they are still looking. Phoebe is still having fevers. She is completely neutropenic. She is not herself. She is tired, weak, upset, and irritable. She hasn't sat up or got out of bed since last week and we are hanging on and desperate for some sign that our girl is getting better. 

Phoebe has been watching Finding Nemo on repeat for the past two days. This is a pleasant and surprising change from her usual pick of Frozen and Brave and we are so very happy and thankful to watch with her as last week we were desperate to see her eyes. The message in Finding Nemo is clear - Just keep swimming. Have faith. Never give up.

Choose hope. 

Phoebe is with us today because we have done just that. 

Please keep Phoebe in your prayers and thoughts. Please visualize healthy cells and a strong and healthy Phoebe. She is the bravest and strongest girl I know and she is working so hard to get better. 

Just keep swimming Phoebe. Just keep swimming. 




Tuesday, October 7, 2014

Hope today came in a very small and sweet smile from Phoebe, a few sips of water, time in the rocking chair and the first time Phoebe has wanted to be held in days, and the news that the spinal fluid is clear of Leukemia.

The spots on Phoebe's brain are most likely from infection which is terrifying but somehow not as terrifying as leukemia. Unlike we thought previously, this did cause her to have two strokes. One on the left side of her brain and another on the right. The strokes have affected the  movement on her left side and her speech. She is talking but her speech is very slurred. We saw the neurologist today and he is monitoring them closely with MRI to track progress. Phoebe has her next MRI on Monday and they will also be looking at her spine and hopefully doing a bone marrow aspirate.

Phoebe hasn't eaten in over a week and so today we decided to put in a feeding tube. She knows all about this tube and when she heard it mentioned she started to cry and put her hand in front of her nose to block the nurses. It has been two and a half years since Phoebe's last feeding tube and this was really hard for me although I know that it is a necessary step to move forward. I was holding on to hope that Phoebe would wake up and just want to eat. Nutrition is so important and the feeding tube will help give Phoebe the energy she needs to heal. 

We are now on step down in the ICU so Phoebe has moved another step in the right direction. She is still having fevers although they are not as frequent, and she is being monitored closely. 

One step at a time. 

There she is. Amazing and strong Phoebe Rose. 






Monday, October 6, 2014

Hope for Phoebe

It has been an exhausting and very emotional day. Phoebe has not been able to eat due to the sedation today as well as the seizure and possible stroke and the chance that they could have affected her swallowing. She went to bed last night crying out for food, water, juice, milk, her favourite soup, a banana, a cookie. She woke up crying for the same. Her speech is slurred, but she is making sense and just kept asking and then demanding I bring her something "this instant". Phoebe hasn't really spoken to us in days. To hear her voice pleading with us and to have to tell her, no, she cannot have these things, and to not be able to bring her every single thing that she asked for broke my heart again and again. These are the things that I can control, as her mom. I can feed her and bring water and juice. I can try to make her happy. It is a terrible and helpless feeling to not be able to do this. I would wake up every hour on the hour to feed and soothe Phoebe if she wanted me to. I would hold her and rock her all night long if that would help. 

Phoebe was scheduled for an MRI of her brain, a CT scan of her belly, lungs and sinuses, a lumbar puncture, and an EKG. She had all of this and had her line pulled, and three IV lines placed all while she was sedated today. This required a significant amount of planning and preparation by the staff at St.Jude. We are grateful as doing this saved a lot of trauma for Phoebe who has had enough. 

Phoebe is still resting after her long day and she has not yet woken up from the sedation. We do have some results from all of these tests. Phoebe did not have a stroke and doesn't have any clots in her brain. The doctors think that she did suffer from a seizure and so she will remain on the anti-seizure medication. The spots on her brain are either an infection or leukemia. The doctors think it is an infection but we are waiting for the results from her spinal fluid to know for sure. Her spinal fluid has been clear of leukemia for years. Years, and we are clinging to that hope. 

There is also a fungal infection in Phoebe's lungs. We have never had to face a fungal infection before or an infection in the brain, and to be honest, we are just terrified. I have never been more terrified. We know because we have been on this road for many years, just what we are up against. Phoebe has some huge mountains ahead of her and she will need help to climb them. We had a wonderful nurse practicioner in the ICU tonight, who after we heard all of this news, stayed in Phoebe's room to talk. She told us how strong Phoebe is and how far she has come. She talked to us with hope about all of the ways that Phoebe can fight and beat this. We needed this gentle reminder of the power of hope as today has been at times, incredibly dark. 

The good news, is that Phoebe is currently being treated for all of these things and the infected central line is now out. She has also regained strength in her arm that was completely limp and weak today and yesterday. Another small victory. We now wait and hope. Wait and hope and watch as Phoebe gets better. 

Phoebe's behavior has been different both since starting this relapsed treatment and now since her seizure. She is irritable, angry, upset and often inconsolable. She is not happy and joyful. She is not herself, but occasionally, and thankfully, there have been glimpses. The doctors think that this behavior is related to the spots that were seen on the brain CT and MRI. It is heartbreaking and cruel that this has happened to her and we can only cling to hope that she will once again look at us and smile. Phoebe has a strong and beautiful personality and something as bright as her spunk is not so easily broken. 

We believe but right now, looking any further ahead than today is too difficult. Today is what matters right now. We made it through this day and we now have most of the answers that we need and we can continue to move forward to help Phoebe to get better. We will never give up on our girl and we will be by her side every step of the way. 

Thank-you for continuing to support us through this very long journey. We received many beautiful messages of hope today as well as many kind donations. We really wouldn't be able to do this without help and we are incredibly grateful. I like to think that all of your love and hope is surrounding Phoebe right now, and this brings me great comfort. I imagine our love and hope surrounding Phoebe and our collective voices whispering to her that tomorrow is a new day, a day for healing and progress. 

You can do this sweet Phoebe. 

Mae met Katy Perry today at the hospital. She was visiting and we saw her right after Phoebe went in for all of her tests. Mae and Phoebe love the song "Roar" and used to sing it all the time. I can't help but think that this is a good sign, and Mae was so excited to meet her. 


Sunday, October 5, 2014

ICU

Phoebe is in the ICU. She had something that looked like a seizure or a stroke earlier today and was rushed to CT for images of her brain.

The images show something on her brain. It could be from a stroke or infection, or it could be related to leukemia. 

Tomorrow she will have an MRI of her brain, a CT scan of her entire body, an LP, an EKG, and her line will be removed because her blood cultures are still positive for bacteria. She may also have a bone marrow aspirate. She will have two IV lines put in for access so that she can continue to receive antibiotics, anti fungals and now also anti-seizure medicine. All of these tests should give a better picture of what is happening. We are taking things one day at a time.,

This is just so cruel and my heart aches for Phoebe. I have never been more afraid or felt more helpless. Holding Phoebe today and watching her as she was having a seizure was the hardest thing I have ever done. I can't put it into to words and I don't want to. 

Phoebe is sleeping now and peaceful. She is still having fevers. She has regained some movement of her arm that was completely limp earlier and although her speech is slurred, she is making sense. As we were going to the CT she pointed to a new playroom and said "what's that? Can we go there when I'm all done?" It was the most words she has spoken in days. These are small victories and Phoebe is amazing. 

Phoebe has an incredibly long day ahead of her tomorrow, please surround her with as much love, hope, prayer and positive energy as possible. 














We are still in the hospital. Phoebe has a bacterial infection in her blood that is resistant to one of the main antibiotics used for treatment. They are treating it with another drug and so far, her blood cultures have been negative for 24 hours.  

Despite these negative blood cultures, she is still having very high fevers and so tomorrow she will also have a full body CT scan to look for a possible fungal infection. They have started treatment for a fungal infection just in case as the high fevers on antibiotics suggest that this may be another problem. 

She also has a sore in her mouth, around one of her crowns, that could be an abscess although without any immune system to mount a response, it is hard to tell. It could also be a virus. It doesn't appear to be fungus so that is good. Tomorrow the dentist is also going to have a look. 

She is tired and sleeping most of the day. She isn't eating or drinking. She is depressed and sad and angry and I hurt for her. My heart aches and I just want to see some signs that she is getting better. 

How does this happen? How did we get here? 

Phoebe has been neutropenic for months. She has no immune system. She has nothing to fight viruses, bacteria and fungus and this is terrifying. This is what cancer and the treatment for cancer does.

The reason we are here, the relapsed leukemia, is always in the background. It never leaves our minds, but right now, these fevers and other issues are at the forefront. Phoebe will not receive the last four days of treatment for her relapse until she heals. She needs to heal. 

We have dodged a million bullets up until this point and we can only hope and believe that we will continue to do so.
We believe that Phoebe will be okay. We have to. Right now that is all we can do to keep from completely breaking down. We are taking it one day at a time. 

Phoebe will go in for her CT scan tomorrow morning. Please pray that there is no fungus. Please visualize clean and clear scans. Please send Phoebe strength and hope and love. 

Jon and I are alternating shifts at the hospital and last night as Mae and I were leaving, the stars were out and bright and she looked up and said she wanted to make a wish. She told me that she wishes we were home and that her and Phoebe were in the backyard swinging. "You know, I am the one that taught Phoebe how to pump her legs". 

Today, I am visualizing a healthy and happy Phoebe, swinging so high that I am yelling at her to stop pumping her legs - she is laughing at me and her hair in blowing wild in the wind. Mae is beside her and life is as it should be. 

I can see her. 



Thursday, October 2, 2014

We love you Phoebe

Phoebe was admitted to the hospital last night because she had a fever. She has been weak, tired, depressed and just not herself for the past two weeks and we have worried that something is terribly wrong. That is something terribly wrong on top of the terribly wrong that we deal with on a daily basis. 

We are still in patient and will stay in the hospital for at least a few days. Phoebe has a bacteria growing in her blood and central line. She also has zero white blood cells, so nothing to fight this infection with. She has been started on two antibiotics and spent most of today without a fever although her temperature jumped up again this evening. She is tired and slept most of today, leaving her bed only to go to the bathroom. 

She is scheduled to start her last pulse of steroids and chemo tomorrow, but her doctor would like negative blood cultures and no fever for at least 24 hours before we do this, so it will be delayed. We may also hold the steroids as last week the combination of drugs was thought to cause a very low heart rate. This by itself is terrifying. 

In her own way, Phoebe is telling us that she needs a rest. 

When we began this journey, almost four years ago, I remember the first month as one of the hardest. Phoebe was a 9 week old baby and like all parents do with a new little one, we had just started to admire her beautiful smile and listen to those sweet little coos that only babies make. Then it all stopped. Phoebe didn't smile for weeks and I remember worrying that we would never see her smile again. I questioned what we were doing and felt intense guilt that is only stronger today because of all the pain that she has suffered. 

Then Phoebe smiled again and like magic, the worry washed away. Or at least for a moment we were at peace. As I have watched Phoebe sleep the days away for the past two weeks, I have thought often of those days and the relief that came with the sight of Phoebe's beautiful smile. It has been almost four years since we began this journey and at times it seems impossible that we have been fighting this for so long. Phoebe's smile and spirit has kept us a float. When I think back on the past four years, I realize that I don't remember days that Phoebe didn't smile as much as I remember the days that were filled with pure joy. I don't think about the pain and nausea, the hair loss, the fatigue and all of the time spent away from home as much as I think about and admire the two brilliant and incredibly smart and sassy little ladies that Jon and I have managed to raise against all odds, in complete and utter chaos. 

They are spectacular and together, we will make it through. 

In all honesty, these past few weeks have been among the most terrifying we have experienced over the course of this journey. There is a fear that finds its way into our everyday. Lately this fear has been hard to overcome. It finds me waiting in line for a coffee and reduces me to tears. It keeps me awake at night. 

We see Phoebe suffering, we miss her smile and personality, and we pray that at the end of this treatment, we will have made the right decisions. That this will be enough to move forward. That this will be our first step towards a life without this cancer. There is no set path or next step and we are up against incredible odds but we will always do everything we can to see Phoebe through this. 

Today we spent most of the day together in Phoebe's little room. Mae did her school work and Phoebe rested. Phoebe looked like she was sleeping, but occasionally when Mae would do something silly, she would break into the most beautiful giggle. Eyes open just enough to see Mae. 

We love you Phoebe.