Roller-coaster

When I think of all that has happened these past almost 5 years, the first word that comes to mind is rollercoaster. It has been a rollercoaster of thoughts, emotions and events - there have been ups and downs, joy and sorrow, light and darkness, and a lot of the time we haven't known what to think or what to believe. It just keeps going and we keep hanging on. 

The relief and happiness we felt after hearing the bone marrow results lasted for a few days, or until we heard the chimerism. The chimerism is improved, but does not match the just 8% leukemia that was reported by MRD. We are confused and feel helpless. Add to this that over the past three days Phoebe has had blast cells show up in her labs and we are just terrified. The blasts are not consistent - the first day there was 3%, then just 1 that didn't look like leukemia, but today although there are still few, they are "suspicious for leukemia". They could be something else and in a perfect world they would be recovering cells that will mature and help Phoebe fight infection. 

Up and down and around we go. 

Phoebe doesn't know what blast cells are and if you ask her she will tell you that there are no more "bad cells", that she feels fine, and to please stop asking. She is our leader and so we will follow her, but we have been on this road for far too long to ignore the fear and the worry. 

For now, we will keep putting one foot in front of the other. Phoebe wants to ride her bike, she is eating, laughing, and playing. She has her Hallowe'en costume picked out - in fact she has permanently draped it over a chair in our small apartment in anticipation for the big day. She has also picked out her costume for next year. She is strength, resilience and hope all wrapped up in a small but incredibly mighty package. 

She is a force and we will always fight for her. I just wish there were options and solutions to this problem that at times is completely suffocating and seems insurmountable. 

Today is the last day of childhood cancer awareness month, but for us, it doesn't end here. Everyday is childhood cancer awareness day and we are surrounded by sick children who need help, more options and more funding for research. 

Please remember that kids get cancer too. 

You can help by donating blood, registering to be a bone marrow donor, donating money to an organization that helps children - like those listed at the right of this page because many large cancer charities direct very little of the money raised to kids. You can share stories of kids with cancer and wear a gold ribbon. You can help by telling your now candidate, but soon to be elected official (in Canada), that finding a cure for childhood cancers and supporting survivors should be a national priority. 

Thank-you for reading and sharing Phoebe's story. 

"Nothing can dim the light which shines from within". Maya Angelou

 

Mae

Mae ...

Today Mae proudly walked 5km for her sister Phoebe and all of the kids at St.Jude. She raised close to $1500 by making and selling rainbow loom bracelets. We are very proud of her. 

Mae was just 23 months when her baby sister was diagnosed with cancer and like Phoebe, she has grown up and experienced many firsts and milestones in the hospital. 

Despite the struggles and heartache that have shaped her life, Mae shines. She is happy. She is like a breath of fresh air and although she is only 6 years old, she is wise beyond her years. If you ask her, she will tell you everything you ever wanted to know about the immune system, blood, children's hospitals and her sister Phoebe. 

This year has been so hard. It has been by far the most difficult despite everything we had already been through. Mae has been witness to too many traumatizing and devastating things. She has sat quietly as doctors have discussed infections, strokes, seizures, cancer, and terrible odds. She has seen her baby sister scream in pain. She has walked beside us the many times Phoebe has been transferred to the ICU. She has seen Jon and I completely broken. She has asked if Phoebe will ever come home. She has watched as Phoebe is sedated. She has wondered out loud if the Phoebe that she loves so much would come back to her after a stroke and fungal infection in the brain caused her to be unrecognizable. She has sat by and held her little sister's hand through days that would cause the strongest people to completely break down. Despite a fungal infection that has left marks and scars on Phoebe's skin that are most likely permanent - Mae sees nothing but pure beautiful and brave Phoebe. Unlike some adults who have asked, "what is wrong with your baby", Mae chooses kindness and focuses on what is important. 

Mae talks about her dreams - she too dreams of cancer and of Phoebe. She says that "the guys with swords are the bad guys, but then there are good guys with shields and they are protecting Phoebe". I hope the good guys win, she says. 

She worries about Phoebe and has asked me the most heartbreaking things these past few months. Words that I can't bring myself to write down because it makes all of this even more real and heartbreaking. Questions about life and death and heaven. No six year old should dream of cancer and wonder where her friends have gone and if they are hurting. 

Throughout all of this heartache and trauma, time and time again, Mae chooses hope.

She has helped Phoebe learn to walk again after strokes and too much time in the hospital. She is the first to cheer her sister on as she tries something new. She has patiently waited for Phoebe to be well enough to play. Time and time again. She will do anything and everything for Phoebe and she knows that she helps Phoebe to heal and thrive. Despite many opportunities to go home - Mae chooses to stay in Memphis, "because Phoebe needs me". 

I have never seen love like the love that Mae has for her sister. It breaks my heart and fills me with pride all at the same time. 

September is childhood cancer awareness month - and a childhood cancer diagnosis affects the entire family. Siblings, like our sweet Mae, are often the unsung but very brave heroes. 

Getting there ...

All things considered, Phoebe is doing well. We are still at the hospital everyday and many days are very long - some stretch into the wee hours of the morning and have us returning home when other people are getting up, but when we are home, Phoebe is up and joyful. She loves playing 'just dance', she is learning to ride a bike with training wheels, and she has started to ask her Daddy to make "his special restaurant food" - her old favourites which is a great sign that her appetite and love for food is back. Phoebe has always been a "foodie". 

Yesterday was the bone marrow aspiration and while Phoebe was sedated, her central line was replaced to hopefully avoid another infection. I have honestly lost count of how many of these central lines Phoebe has had, but I think this is number 13. We are still waiting for the chimerism results, but so far, the bone marrow looks better. Before the gemtuzomab, Phoebe had 91% disease in her bone marrow and it was a mix of ALL and AML. Today, her MRD (minimal residual disease) is 8% and it appears to only be AML. This is interesting and encouraging as the gemtuzomab is only targeting the myeloid leukemia (AML), and the concern among all of Phoebe's doctors was that it would get rid of this population of leukemia and cause the other, the ALL, to take over. This is not what is happening and so we are continuing with this treatment and Phoebe will receive 2 additional doses over 4 weeks. This result is really the effect of one single dose and we are relieved. Finally, something is working. 

Thank-you all for keeping Phoebe in your thoughts and prayers. This road is long, so much more so than I could have ever imagined. We are so grateful for the love and support we continue to receive. We are weary but hopeful. Always hopeful. And thankful for each day. 

Go Phoebe go ... 

Phoebe had exploratory surgery and a biopsy of her sinuses on Thursday. She is still recovering and her little nose is sore, often bleeding, and congested, but the ENT found no signs of a fungal infection. This is great news and Jon and I breathed out a collective and huge sigh of relief when the doctor came to give us the results. 

Our days at the hospital are long and often exhausting. Yesterday was "granulocyte day", and we were in the medicine room at St.Jude until 4:30 in the morning. Because Phoebe's skin biopsy once again tested positive for fungus, we have gone back to receiving the anti-fungal medicine daily, and as long as my hemoglobin allows it, granulocytes weekly. We are waiting for final pathology results regarding the skin biopsy and until then we are staying the course and hoping this fungal infection remains under control. 

Phoebe is tired and most days she spends her time sleeping or relaxing on the couch. She is still complaining of tummy pain and we still have not been able to figure out a cause. Because of this, she is not eating very much and with all of the trauma to her little nose, we can't put in a feeding tube. She has a lot of healing to do and we just want her well. 

Phoebe will receive another dose of gemtuzomab on Monday and on Friday she will have a bone marrow aspirate. We are hoping and praying that this drug has been successful - there is still no sign of leukemia in Phoebe's blood, so I believe it is helping. 

Please keep our sweet Phoebe in your thoughts and prayers. 

If you are in Ottawa, please attend the childhood cancer awareness event on Parliament Hill tomorrow. There is strength in numbers and we need your support. We are not able to attend this year and wish we could be there. Mae is busy drawing pictures of the Peace Tower in gold to commemorate this great event. So much hard work, love, and dedication goes in to making this event happen each year - to the "Gold on the Hill" team of amazing people - thank-you! 

The first day of school ...

Today is the first day of school. We didn't pick out a first day outfit and pack lunches. We didn't rush out the door to catch the school bus. I didn't drive behind the bus to see my girls reunited with their friends and teachers, and I won't be picking them up afterschool - with smiles and excitement to tell me about their day with new friends and a new teacher. 

Instead, we woke up in the hospital this morning in preparation for exploratory surgery on Phoebe's sinuses. We have been in the hospital since Thursday and things are improving, but the doctors want to be sure that we aren't missing anything - like an aggressive fungal infection in Phoebe's sinuses, and so today, on the first day of school, Phoebe was supposed to have surgery. This surgery has since been postponed because Phoebe's hemoglobin is too low and blood wasn't able to be given in time, so instead we woke up in the hospital on the first day of school for just another day of doctors, tests, blood work and a sad Phoebe who just wants to be home. 

Inspired by all of the first day pictures on Facebook, we also took some pictures, but they are not the first day pictures that we hoped to take - with both girls smiling on the front steps, or getting ready to board the school bus. Phoebe is in senior kindergarten, yet she has never set foot in a classroom or on a school bus, and this year will be the second year that Mae starts school without her friends. We are homeschooling, and even if it is between appointments and in the shadow of cancer, it is with both our girls - and for that we know we are among the lucky ones. 

Please remember that kids get cancer too. It is devastating and traumatic and just not fair and we need to do better. 3% of all federal research funds is simply not enough. It is not enough to support childhood cancer survivors, over 80% of whom are living with a chronic or life threatening long term health issue. It is not enough to cure our kids as there continue to be childhood cancers for which there is no hope of a cure and very little research to advance it, and it is not enough to ensure that all kids with cancer in Canada have access to the treatment they need regardless of where they live as this currently does not happen. 

We need to invest in research, and by doing so, invest in our children's futures, because all children should get to stand proudly on the front steps as their just as proud parents take a back to school picture. 

First day of school photos should not look like this. 

3%

Phoebe spiked a fever yesterday and is now in patient at St.Jude. Blood cultures were taken and show a gram positive infection in her blood. It looks like the same infection she had last month. 

Although she wasn't herself yesterday, she was sitting up, watching movies and asking her daddy to make rainbow loom bracelets for her. He was making them to order and she would happily show the nurses her latest one. She went to sleep with an arm of rainbow loom and woke up in extreme pain. 

Phoebe woke up in the middle of the night screaming and crying out in pain. She was holding her stomach and asking for medicine to help. Despite all that she has been through, I have never seen her scream in pain like she did last night and it was so difficult to stand by and know that there was nothing I could do to take it away. I was helpless. The pain escalated and Phoebe began crying to the nurse to give her pain medication - something else she has never done. Just writing this causes me to break down - tears filling my eyes. It shouldn't have to be this hard. Phoebe was given morphine for her pain and even after that she was still uncomfortable - grunting and moaning as she slept. 

They did an X-ray in the middle of the night, and didn't find anything alarming and today an ultrasound also showed no inflammation. 

The skin biopsy is positive for fungus. What type of fungus, we don't know, but it looks to be in the same family as the fusarium and given Phoebe's history, all of the doctors are concerned. It appears to be more controlled than when it first appeared in April - but that it is still threatening Phoebe's life is just devastating. 

Each time the doctors walk in the room I brace myself. I worry all the time. I worry about what they will say, what else have they found, what else does Phoebe have to overcome? Will tell us there is nothing else they can do? That is my fear and each day they promise to do all that they can I breathe a sigh of relief. 

Right now Phoebe is not well and we need all the love, prayers and good and positive thoughts you can send. She is in pain and needing oxygen, she is still having fevers, and her body is full of infections that she doesn't have an immune system to fight off. 

I think of all Phoebe has overcome and it both settles my weary soul and breaks my heart. I think that she has come so far - she is a miracle and so strong and she will continue to push on and fight, but then I am stopped by the pure sadness and heartache for all my sweet Phoebe has had to endure. None of this is okay and we need to do better. This is what pennies from a billion dollar research budget gives us. 

Please keep telling Phoebe's story. Help us raise awareness so we can change this story. No one should have to go through even one of Phoebe's hard days yet she lives through so many, thousands of miles from home. 

To date, only 2 federal candidates have confirmed they will attend the Childhood Cancer Awareness Event on Parliament Hill. This is two more than last year and the year before and Elizabeth May is sending a representative on her behalf, so I guess we should be happy. I'm not. For the past three years, this event has been completely ignored by the other federal leaders despite many emails, invitations, and tweets. Invitations, frequent requests to send a representative, or to simply wear a gold ribbon are unanswered. We have not even been granted a reply and I often wonder what it would take to get their attention - I wonder how they would feel and what they would do if they sat where I do right now. 

Among so many things, we need a cure. We also need treatments that don't "slash, burn, and poison" our children. Canada, we need more than 3%.