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

Friday, January 23, 2015

We need a cure



Phoebe's bone marrow results are not good. 83% of the cells in her bone marrow are leukemia. We are still waiting for final results, but under the microscope it appears that once again, there is both AML and ALL leukemia. 

There are no words to describe how this feels and I am tired of writing that we are devastated and heartbroken - we are that and so much more. At times it feels like I can't breathe. We ache for Phoebe - we ache for her to be well again, for this to be okay, for answers, for solutions, for the right words to explain this to 6 year old Mae who also aches for Phoebe. 

Unfortunately, there are no new drugs and no new treatments for pediatric AML, and we have already tried many things. Ours is a very harsh reality - to know that our lack of options is due to the lack of funding and attention paid to finding a cure for pediatric cancer is what is truly devastating. I will never understand why childhood cancer research is not a priority. I will never understand why children are left to fight cancer with outdated chemotherapies. I will never understand why our government dedicates just 3% of all research funding to childhood cancer initiatives. I will never understand why profit is placed higher than the life of a child. If I could, I would change places with Phoebe in a second.

The wonderful doctors at St.Jude are once again putting their heads together for Phoebe. There is a medicine that we can try that we hope will help to calm this storm. We have tried this drug once before with good results and it is ironically one of the only two new drugs that have been approved for use in pediatric cancer in the past 30 years. I remember being excited about it three years ago. Three years later, I wish there were more. There should be more. Phoebe's disease responded very well to this drug when she received it many years ago and we are holding on to the hope that it will again. 

Our plan for now is to try to enjoy the weekend. Phoebe would like to ride the Cinderella carriage in downtown Memphis and so that is what we will do. Moving forward, we will continue to support, love and hold Phoebe tight through this. 

Despite all of this, Phoebe is okay. We were excited to see good blood work and 99-100% donor peripheral blood chimerisms this week - Phoebe has also had more energy and is happy so this news was not at all what we were expecting. 

On Monday, Phoebe will start chemo again and we will repeat the bone marrow tests later in the week to monitor her progress. We need good news

Please keep Phoebe in your thoughts and prayers. Please remember that kids get cancer too. 

We need a cure. 





Friday, January 16, 2015

Phoebe was at the hospital today for blood work, a visit with her doctor and after some discussion about her weight, a feeding tube. The feeding tube goes in through her nose, down her throat, and into her stomach. Through it she receives nutrition that she desperately needs to get better. We are no strangers to the feeding tube, in fact, when all of this began, Phoebe had one for 16 consecutive months. Today was still heart breaking. 

Some of you reading might think that this isn't a big deal, and in the big and devastating picture that includes relapsed cancer and all Phoebe has been through, it's probably not, but to Phoebe, it is huge. It is the biggest deal there is. 

We have tried to explain to Phoebe that the tube is necessary to help her regain strength, that she needs it because she hasn't been eating. To this, she said, "I'll eat. Give me my pretzels". We then told her that she needs to gain more weight, that it is dangerous and not healthy to be so thin. To this, she said, "I'll go and get weighed again. Please let me weigh myself again to see if I'm okay. I'll show you". We tried to tell her that the feeding tube will help her to get better, that it will give her energy.  "I am better", she said. We said it will help her grow big and strong without Mummy and Daddy always bothering her to eat, "I am big and I will eat, I promise", she said. Then, as it became clear that the tube was going to happen, she began to scream - "no tubie, no tubie, I will not get a tubie - I'll just pull it out!". 

After the nurses inserted the tube, they had to check for placement. This requires them to listen to Phoebe's stomach as air is pushed in via a syringe. To this, Phoebe cried "stop touching me, I promise I won't pull it out". 

By this time, I was in tears and like Phoebe, I felt completely defeated. 

Phoebe has lost 7 pounds since we arrived at St.Jude and she is now at the same weight she was at 2 years old. It is just not healthy or conducive to healing and it is not okay to watch her get smaller and smaller. The feeding tube is necessary, but for Phoebe's sake, I just wish there was some other way. 

The pleas and cries of "no tubie", and "I promise I'll eat" will probably haunt me forever. Looking up from holding Phoebe as the nurses inserted the tube to see Jon watching and fighting back tears will also be an image I won't soon forget. 

I hope Phoebe forgives us. Tonight as I put her to bed, she finally asked me for some milk - she had been refusing to eat and drink since the tube insertion. She listened without tears when we talked about it some more, but as she fell asleep, I heard her mumbling quietly, "I didn't want this tubie". She is the most beautiful, courageous and stubborn person I know and I think that her determination combined with forgiveness and love carries her through these struggles. It certainly carries us through. 

As for blood work, it looks surprisingly great - or not so surprising given that this is Phoebe. Many things are within normal range and results from a peripheral blood chimerism are 99%. The doctors are happy with this, and so, we are too.

Before we left the hospital, we spoke with the nutritionist about our options for "feeds". Being no strangers to the feeding tube, we were already a bit wary of the options. The one most commonly offered lists sugar, corn syrup, soy, and canola oil as its first ingredients. We opted to look into other options and are excited to also try to make our own healthy, nutritious, made with real food, tube feeds. More on that later, perhaps. 

There are plans to repeat bone marrow tests on the 23rd with a chimerism included and until then I will continue to hope, pray, and expect a miracle. 

Please send some love sweet Phoebe's way. 





Friday, January 9, 2015

Back in Memphis

We are back at St.Jude. Phoebe had follow up MRI and CT scans on the 7th, and both show improvements. The fungal lesions in her lungs and brain are still there, but the lungs are much improved with the largest lesion being just 5mm and some appear to be scar tissue or the beginnings of scar tissue. Her brain looks better, but the progress there is slow. 

The bone marrow results that we all celebrated over the holidays appear to be a bit more complicated and the pathologists have detected leukemia cells after all. It is hard not to feel completely deflated with this news. We are thankful that we heard this upon returning to St.Jude and not in the middle of the holidays. 

Phoebe continues chemo today on a 36 day protocol with plans to repeat up to 3 times. The protocol is a balance of chemo with quality of life and opportunity for healing. As much chemo as Phoebe can tolerate without affecting quality of life, while also keeping her immune system strong enough to fight the infections and keep others away. With an ultimate, although still very tentative, goal of pursuing a third transplant. 

If one word could sum up all that is going on, it would be fear. 

Intense fear and uncertainty. 

We are scared and most days we just feel desperate. 

I realized today, after we spoke for quite some time with Phoebe's doctor, that no one really knows what is in Phoebe's best interest and that like we are scared of what might happen and unsure of what is best, so are the doctors. There is no data, no statistics, no right answers, and nothing is even remotely certain. There is however, hope and research. 

We desperately want to bring home a healthy and cancer free Phoebe, but our reality is at times, completely overwhelming. We have been on this road for so long, we have lost so many friends, we have watched Phoebe endure too much. We are faced with incredibly difficult and impossible decisions each day. The terrifying reality of what could happen looms like a dark and ominous cloud, always over our heads. At times, we are hanging on by a very thin thread. 

When things seem impossible, like today, it helps me to focus on the good. 

Phoebe is here.

We are able to receive promising treatment and excellent care at St.Jude, that is not accessible to us at home.

We receive this treatment at no expense to us which is just amazing and something we are so thankful for. 

Phoebe's doctor is working hard to find cures for and answers to MLL+ infant leukemia. 

Phoebe is here.

We are able to stay together as a family in Memphis, thanks to a lot of support. 

Mae is healthy and happy. She is learning so much and we are able to teach her. 

Phoebe has almost fully recovered from the strokes and surprises us everyday with how incredibly smart she is. 

We are not in the hospital, and although we visit often, we sleep under one roof, and in our own beds. 

Phoebe has been given another chance, to beat this. 

We get up every morning with our family complete.

Phoebe is here. 

Please keep Phoebe in your thoughts and prayers and join us in believing in her miracle. 

Anything is possible. 

Go Phoebe go. 











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.