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. 

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. 

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.

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. 

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. 

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.

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.

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.