Options

We haven't heard the MRD results yet, but we did meet with Phoebe's doctor today so we have an idea of next steps. Sort of.

We know one thing for certain and that is that Phoebe is not finished fighting. He told us today that he is "fairly certain" that if we do nothing, even if the MRD is negative, that this Leukemia that we have been plagued with for over two years, will come back. Our talks with this doctor have changed from hopeful long term planning and talk of the future, from what Phoebe will be when she grows up, from how she does not need to be monitored as closely as I would like, to talk of time. To talk of giving us a year without disease and hoping for more. Hoping that when/if this disease rears it's ugly head again, that we will be ahead of it. Smarter.

I will explain.

Phoebe's leukemia is a monster, sadly we know this to be true. We have lost too many friends to this disease to believe anything but this. It has proven to be resistant to some of the strongest chemotherapies available. It reappeared after the highest doses of these drugs meant to cure. It came back after transplant. It came back this time in a way that most doctors have never seen and so most expect it to come back again. I refuse to believe this to be true, but accept that we need to do all we can to give Phoebe more than simply a year without disease. We need to and we will give Phoebe a lifetime.

The plan revolves around many unknowns, but today we spoke about options. Because I like to look at the bright side of things, I will say this. Right now many wonderfully new, innovative, less toxic, and promising treatments are being trialled for pediatric leukemia. Progress is being made and the word "cure" has been spoken about these new therapies. We are hopeful that Phoebe will qualify and be able to have one of these treatments. There are treatments using modified T-cells, harnessing the power of the immune system. Cellular therapy that is novel and different from anything Phoebe has had before. Best case scenario would be for Phoebe to receive this type of treatment but many things need to fall perfectly in place for this to happen. There currently are no treatments like this offered at St.Jude, or any that we qualify for with our very low or possibly zero evidence of disease. They are offered elsewhere in the US - Texas, New York, Philadelphia. Another bright side is the wonderful, dedicated and determined team of doctors that Phoebe has on her side who are putting their heads together once again.

In lieu of any available cellular therapy, Phoebe's doctor is suggesting a year of maintenance chemotherapy and close monitoring. This is very low dose chemo to prevent disease from coming back, or raging back if it does reappear. Essentially waiting and seeing at it's finest. Waiting for potential disease to show and being ready when it does. This option includes a possible third transplant. Or perhaps nothing. Perhaps Phoebe will once again march to the beat of her own drummer and prove that anything is possible. Even the very good things.

Phoebe has already exceeded every expectation and surprised her doctors at each turn and I believe that she will continue to do this.

Cancer aside, Phoebe is doing so very well. She is like the most perfect spring day. She is growing, thriving, living, learning and to watch her in action is to watch magic happen. She embraces her life as we all should; with her eyes and heart wide open, ready and willing to take on whatever the day brings.

She is here. I can hug her as much as she will let me, and for that and the very fact that we have options and are still "fighting", I am grateful.

"We are a family, and so nobody is going to go away. Unless they just go to the grocery store". Mae Doull-Hoffman

So far so good ...

Phoebe's bone marrow aspiration went well yesterday. She was playing soon afterwards and had a great day.

Today we heard wonderful news. The preliminary results are clear of leukemia and her bone marrow chimerism is 100% donor 2. We are now waiting for minimal residual disease (MRD) results which will tell us if there is any leukemia, even if a very small amount, in the bone marrow.

We are off to a good start and hopeful for continued good news. Phoebe is a beautiful picture of health and is living life to the fullest. She is eating really well and will try anything. She loves Kale which makes me smile. Kale and vegetarian sushi are her two new favourite foods. She is adventurous in all she does.

We have almost an entire week off from the hospital and plan on exploring more of Memphis and maybe even taking another road trip.

Mae and Phoebe were excited to receive some short video messages from Mae's teachers and a few classmates. I think they have watched them a hundred times. Phoebe's favourite is a video of Mae's class singing Oh Canada. When she watched it for the first time, she smiled and said, "that's my home. That's my classroom. My class is singing". A couple years too early, but she is right about home. And very wise.

Go Phoebe go.

In other news, there is a great fundraising raffle being organized in support of Phoebe. Jon and I are so grateful for all of the kindness and support for our family and for our fabulous community and friends. This raffle is being held at the Hot Tots Children's Consignment Sale (Earl of March High school) on Saturday, April 6th, from 9-4 and Sunday, April 7th from 10-1. There are wonderful prizes up for grabs! For more information about the event, and how you can help, please email Jenn at yjguitard@hotmail.com, or see: https://www.facebook.com/events/428303427261687/?ref=3is

Another change of plans ...

Another change to the plan today and the roller coaster continues ... Phoebe's doctor phoned to tell us that he had changed his mind. That after speaking with the head of BMT here at St.Jude, together they have decided against doing the DLI. He explained that because Phoebe is so soon from radiation, the t-cells could cause harm, as although she has no symptoms, she could still be recovering the effects.

He has decided to do the bone marrow test after all and so it is scheduled for tomorrow morning. Then, we will wait for the results, regroup and decide what is best to do.

We are in uncharted territory and to be honest, there is no right answer, no set path, no real plan. Phoebe's doctor told me today that he thinks that because this leukemia has already come back once after the transplant with my cells, he thinks that if Phoebe does not have more treatment it will likely come back again. He said that he has a lot of thinking to do in regards to what should come next. What is the right treatment?

We don't have many options. The NK trial that brought us here is not an option anymore because Phoebe does not have enough disease, despite the fact that it could be the best option for her. The trial at CHOP using modified T-cells is still considered as a good option if we are able to qualify. Phoebe was turned down by the doctors in Philadelphia prior to our arrival at St.Jude because her cells were ineligible, but there has been talk of trying again.

It is frustrating, with out a doubt, and overwhelming, but I can't help but be thankful to still have so many people putting their heads together and working to find a cure for my girl. I believe that all of these great minds together will come up with something brilliant.

Thank-you all for loving Phoebe and for keeping her close in your thoughts and prayers. Our appointments start bright and early tomorrow at 7am, and we should have the results of the bone marrow aspiration next week.

Change of plans ...

It is a good thing we went to the beach when we did. Today we got results of Phoebe's t-cell survey; this is a test that looks at the break down of different types of t-cells. The "helper t-cells" are important and help the body fend off viruses, they like to see them over 400 and when they are low, the kids are required to wear a mask and be extra cautious. Phoebe's are 270. If I had known this on Friday, we probably would have postponed our trip.

It is normal and expected for these cells to be low after chemo and radiation so not surprising, but still nerve wracking. To add to the stress on our nerves, Phoebe's doctor has decided to postpone her bone marrow aspiration and give her a dose of my t-cells. A procedure called a DLI (donor lymphocyte infusion). He told me today that he would give Phoebe more cells even if the results were zero as a precaution, so rather than wait for the results, waste precious cancer kicking time, and risk the chance that they are not zero or close to it, we will give the DLI and follow with a bone marrow aspiration two weeks later. He also said that right now, when Phoebe's t-cells are low, is a good time to do this.

In two weeks, if it so happens that this bone marrow aspiration is not MRD (minimal residual disease) negative then Phoebe will have another DLI and so on until every last bad cell is gone forever. Never to be seen again.

We have pieces of a plan again, and it looks like our stay in Memphis will be extended. The latter may not be so bad as I have heard that Ottawa is about to get a ton of snow. Thank-you Mother Nature for cooperating with our schedule.

Because I am donating more cells, I had to see the nurses in assessment triage, have my blood pressure and temperature taken, and blood work done. I brought Mae and Phoebe with me and on the way I was explaining to them why I also needed to go to the hospital. They are older now and understand a lot more about what is going on and have many questions. I told them that I needed to give Phoebe extra special blood cells that are fighters to make sure all of the bad cells go away. I am never sure what to tell them and how much is too much information. This explanation seemed to work as they both started to simultaneously punch the air, to take out imaginary bad cells, all while making pretty convincing punching sound effects.

I am not one to encourage violence, unless of course, it involves the kicking and punching of leukemia to the curb.


Go Phoebe go ...

A trip to the beach

We decided that New Orleans and the beach were too much to squeeze into one quick trip, so we chose the beach.

We made the right decision because going to the beach and letting Mae and Phoebe play in the sand and the water was the very best thing we could have done. It was therapeutic for them, and it was clear that they too needed some rest and relaxation.

Phoebe knows that she can't swim because, as she will tell you, she has "tubies" or a central line that comes out of her chest. She has had this line, or one of 10 different ones for most of her life. I was emotional explaining to her that we needed to be careful and keep her belly and chest dry, knowing that she would miss out on a big part of our day at the beach, but she was okay with it and was happy to just splash her feet and play in the sand. More than happy, she was excited and joyful. Ecstatic. It was a beautiful site but I couldn't help but feel longing for a day without tubes and worry.

This trip has meant so much to us. In our world, which does include central lines, hospital visits, medications, an often suppressed immune system, and leukemia, a trip to the ocean is not usually in the cards. We opted out of many things during Phoebe's time away from the hospital when she was post transplant and at home because we thought it could wait. Camping, the beach, trips; they all could wait. We worried about Phoebe's health and exposure to germs. We threw caution to the wind this weekend (or as much as we are able to with Phoebe) and embraced life and this opportunity. Tired of waiting and worried that life may not offer us another chance. It was worth it to watch Mae and Phoebe run to the beach. To hear shouts of joy. To see Mae swim and laugh and just be happy. To see them be kids, play in the sand, free from worry and a busy hospital schedule.

Phoebe marched towards the sand on our first morning proclaiming "I like it here", her first steps in the sand came with shouts of "woooohoooo!", she stepped in the ocean like it was something she has always dreamt of doing, and she screamed when it was time to go.

She sat down and built her first sand castles, dug holes, ran to and from the shore with her bucket collecting water for her oceanside masterpiece. She found shells. She dipped her feet in the ocean for the first time. Together with Mae, she played to her heart's content.

She fully embraced the local cuisine, trying fresh fish, crab legs and fresh whole shrimp (after her Daddy happily shelled them). As an aside, Jon and Phoebe are kindred spirits when it comes to food. All of this was done and food was eaten with so much enthusiasm and zest for life, I was between tears and laughter just watching her.

More than anything, however, this trip has left me with an intense longing for more. More trips, more ocean, more time, more sandcastles, more sandy feet, more of these beautiful moments.

More time.

Right now, with the uncertainty that fills our everyday, this is the best thing that I can hope for.

I would give anything to be able to know with certainty that Phoebe will survive, to live without this incredible fear and worry, but infant leukemia has not afforded us the peace or comfort or assurance of anything more than moments right now. We are weary, but refuse to give up our hope. Our fierce hope in mighty Phoebe's ability to beat this.

I believe and I hope that we will have a lifetime of moments, but right now, cloaked in uncertainty, I will live one moment, one trip to the beach, one birthday, one blood test at a time.

On Tuesday Phoebe will have a bone marrow aspiration. The results of this test are very important. We have been close to the end of this road for some time now. We have literally been grasping at straws in regards to treatment for much of this journey. Certain that we just needed to find THE right treatment, the right drug. The right answer to save Phoebe. Now we have tried many things and our options are running out. We need to hear good news. We need this transplant to still be the right treatment and the right answer for Phoebe.

Please keep Phoebe in your thoughts and prayers.

Take to the road ...

Road trip planning is in the works. This family is going to the ocean via New Orleans. Or at least that is the plan. Even if just for a glimpse, a chance to dip our toes in salt water, smell fresh sea air. To walk on the beach, where the mighty ocean meets the sand. It will be worth it.

Today we had a few appointments at the hospital, first for blood work and then a visit to the clinic. All looks good and there are no concerns right now. We are now scheduled for a bone marrow aspiration on Tuesday and while Phoebe is sedated, there is a plan in place to unblock her tear duct. Strangest thing is that Phoebe does not produce tears when she cries. None at all. I am told, to have dry eyes, is fairly common post transplant, but Phoebe often also has trouble with drainage from her eyes. Sometimes it is so bad that her eyes are sealed shut when she wakes in the morning. And the process of opening them is painful and difficult. To unblock a tear duct surgically is a simple and standard procedure with little to no side effects that has been suggested by her doctors. If tear ducts are still blocked by Phoebe's age, no amount of breast milk will unblock them. Have you heard this? Apparently (I was told this by many) this is how to fix a blocked duct ... that is to apply miraculous and multi purpose breast milk to the eye. Serious. I can tell you, however, that we have tried this and it didn't work. Not recently, but still.

The latest chimerism shows 100% donor cells and we are hopeful that as the bone marrow results come in, they will be equally as good. Better actually. They will be better. We are hopeful they will be MRD negative which means that after much searching, no leukemia will be found. The "plan" and our next steps rest on these results and what they show. If they are not negative, Phoebe will need more treatment and/or more of my cells, the details of this are fuzzy.

Please send Miss Phoebe some love and extra special vibes this weekend and leading up to this important test. We have had countless bone marrow aspirations but none have evoked fear and worry in me like this one is.

In the meantime, we will take to the road. This journey has taught us to take nothing for granted. This includes a chance to see the ocean. Which will be a first for Phoebe.

One of many firsts, I know.

Spring is in the air

Spring is in the air. Yesterday was a beautiful sun-filled day. We walked to the park, stopping frequently along the way to watch kites, boats, and admire spring flowers all very much in bloom. Mae and Phoebe spent a lot of time on the swings, and Phoebe started to teach her big sister how to "pump" her legs so that she can swing without being pushed. It's funny, Mae can do this but refuses as she prefers to be pushed. Phoebe, always so independent and eager to be a big girl, is excited to learn and tries to pump her little legs each time she is on a swing. She likes to do things by herself and always seems so eager to grow up fast. It is really something to watch her in action.

We ventured from the park and had a picnic lunch. All in all a perfect day.

We were planning to go on a road trip this weekend but a standard urine test came back with bacteria and Phoebe was started on antibiotics, just in case. She hasn't had any fevers so we are hopeful that her body is doing its thing and fighting it off, but the antibiotics will help to ensure that the bacteria clears. We were nervous to go anywhere for fear that a fever would send us rushing back home.

The week ahead is very quiet. We hope to hear results of the most recent chimerism test, and Phoebe has a check up on Thursday. The following Monday is a big day with a bone marrow aspiration.

For now we will continue to enjoy spring and all that it offers. The season of growth is upon us and my hope is that just as the beautiful flowers come into bloom, healthy and strong, so will my sweet Phoebe.

A picture of health ...

A whole lot of normal has been going on around here lately. Today we went to the zoo. It was "cold", and so not very busy, but we braved the weather and had a great time. Phoebe and Mae loved the animals and I walked around dreaming of a day when we might be able to take our girls to see some of these animals in a more natural environment, but for now, the zoo did wonderfully well at filling our day with joy.

Today was a day off, but for the rest of this week, Phoebe has had various post transplant tests. She has had a hearing test, which she passed with flying colours. She has had bone density and bone age tests, tomorrow her thyroid and blood work will be checked, chimerism will be sent, Friday brings an MRI of her hips, and we will know if there is anything to worry about, related to side effects from her transplant(s), as these results come in. These were the appointments that we were supposed to have during Phoebe's annual visit, which we missed due to the relapse. Embracing all things hopeful and believing that this second transplant will be her last, we thought she should have these tests. And her doctor agreed.

We have decided that since we are staying here for a bit longer, that we would try to recreate home here in Memphis. This meant moving out of our one room at the RMH, and trying out an apartment close to the hospital. Phoebe was only home in Ottawa for seven months before our world was turned upside down and the time we spent together outside of the hospital was joyful. Throughout our journey, home has been represented by many things. Home for Phoebe for many, many months of her life, has been a hospital room. We have lived in hotels, an apartment in Memphis and Toronto, the Ronald McDonald House, the Target House. The time we spend at home, wherever it may be, is precious but often not without stress and worry and so we wanted to come home to a place where we could heal. Not to criticize the RMH, but life with a family of four in one room is tough. Our new home allows for meals to be cooked, sleep to be had, and we are happy. We are taking things one day at a time, but we are happy.

Right now, I find it is too much to look forward to what may be, to what bone marrow results could show. In many ways, we are still recovering from the shock, trauma and pure heartache of this relapse. Looking at Phoebe right now, she is glowing, growing and thriving and it doesn't seem possible that she has ever been as sick as she has or that we may still have more work to do. And so, instead of looking forward a year, or even a month (or a week), we will focus on today.

Today Phoebe is a picture of health.

All done

Day ten is complete and although ten days of radiation is but a drop in the ocean compared to what some children endure, we are done. And happy to put it behind us.

We are closing another chapter as we make our way forward with hope.

We had no idea what to expect from radiation. What it would look like, how Phoebe would cope, and so as we have always done, we followed her lead. The reasons behind needing this radiation weighed heavily on our minds when we started all of this. The relapse, the mass that was at one point taking over and threatening her life, the pure fear that it would appear again, but Phoebe managed to trump all of these thoughts. She brought the joy.

She greeted each new face we met with a smile and thoroughly enjoyed playing before each treatment. She soaked up the attention they gave her and looked forward to seeing them each day. She discovered a new playroom, where we also found what seemed to be almost all of the hospital's baby dolls and she got back to playing there as soon as was possible, even when she was still wobbly from sedation. She did not let these weeks and what they brought slow her down. In fact, instead of slow down, she thrived, growing over one centimeter and gaining close to two pounds. All the while giving cancer another swift kick to the curb.

I have learned a lot from Phoebe these past two weeks.

What is next? In two weeks, Phoebe will have a bone marrow aspiration and the results of that will determine what treatment, if any, will be needed. In the meantime, she has a few doctors to visit, most regarding follow up from her transplant as because we were busy dealing with the relapse, we never made it to these appointments.

And in the meantime out of the hospital, we will just enjoy life, the fresh air, our time together, perhaps even some free time. Maybe we will take in some Memphis sight seeing.