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 

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. 

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. 

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.

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.