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 I will never understand why children are left to fight cancer with outdated chemotherapies.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. 

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. 

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.