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.

Tuesday, October 28, 2014

Granulocytes In

Phoebe received her first dose of granulocytes late last night. They were transfused into her PICC line from 11pm until 3 in the morning.

It was a long night. 

The ICU attending doctor sat outside the room watching the monitor as the cells went in. We were told by a few doctors to expect the worst. High fevers, breathing difficulties, and that Phoebe may need a ventilator. We tried to emotionally prepare for the possibility that Phoebe would need breathing support, and be put on a ventilator. We were and are terrified. How does someone prepare to see their child hooked up to a breathing machine? Thankfully, Phoebe sailed through the transfusion and required very little support. 

This morning, Phoebe's ANC is 2600 - that is 2600 cells that are fighting infection. Things are looking up. These cells will only last in Phoebe's body for two days at most, so we need her own immune system to recover for her to truly heal. To help her through and because the first dose of cells was so well tolerated, she will receive another dose today. 

We are seeing some improvements, but Phoebe is still very sick. We are hopeful. Always hopeful, but anxious for a day without fevers. 





Sunday, October 26, 2014

Four Years ...

Four years ago today we were told that Phoebe has leukemia. I knew that something was wrong and had visited the emergency room at CHEO multiple times only to be sent home with a "healthy baby", a hand-out on fevers, and a label of anxious new mother. I wish they had taken me seriously and run a simple blood test. 

Although I knew something was wrong, nothing could have prepared me for that day. The thought that my child would have cancer never crossed my mind. 

That day seems so far away today as I write this from the ICU at St. Jude. Back then we were unaware of the road we were about to take, the shockingly low survival rate for infant leukemia, the harsh treatment, the side effects, the lack of funding, the absence of new medicines and funding for research to find cures. We didn't know about the lack of advances in the treatment of this disease and the far too many unanswered questions. We just wanted our baby well and had no idea what we would need to go through to achieve this. 

Since that day, we have watched Phoebe endure more than most of us will in a lifetime. In fact, she endured more today than most of us will in a lifetime. We have struggled in every way a family like ours can struggle. We have fought for treatment. We have had to relocate to Memphis and St. Jude multiple times. We exhausted all treatment options in Canada in 2011 and have been unable to access anything new at home since then. We have fought the Ontario government to gain access to a targeted therapy that was only available in the US. Thanks to the hard work and determination of an amazing community combined with an understanding and sympathetic Health Minister, we were able to receive this treatment, but the long wait to receive it caused Phoebe's disease to spread. The effects of this wait and a lack of availability for these treatments in Canada resonates today as we watch Phoebe fight for her life in the ICU. If we had been able to start treatment as soon as Phoebe relapsed. If this treatment had been available in Canada or if Canada had a system in place to allow families to access out of country clinical trials, we would have been months ahead of this disease. Phoebe would not have been without an immune system for a month before starting this most recent treatment. We probably wouldn't be in the place we are in today. If. If. If. 

It doesn't help Phoebe to look back and wonder if all of this could have been avoided, but we can work to make change, and part of that change is awareness and sharing Phoebe's story.

Today, Phoebe is still in the ICU. We have seen some improvement but there are still so many unanswered questions. Each day we watch her bilirubin climb, her belly swell, and her fevers continue. She still has no immune system and so nothing to fight the multitude of infections that we know she has. She is on so many antibiotics and antifungal medicines that it is hard to know what is causing what and at times it feels like we are spiraling out of control. We are weighing impossible risks versus hopeful benefits and there are no right answers. At times there are no answers at all. 

We are scaling back on some of the antibiotics and antifungal medicines to help Phoebe's liver and tomorrow, Phoebe will receive a boost of granulocytes - these are the cells that we desperately need as they fight infection. I will go to the donor room at St. Jude and give my cells, and later in the day, they will be given to Phoebe. This will make Phoebe very sick. Sicker than she has been because these cells will go to the many infections that Phoebe has, but the hope is that although she will probably get worse, she will hopefully also get better. We need Phoebe's own immune system to recover so this is a temporary fix, but we are hopeful that it will carry us until we see count recovery. 

To everyone who has been traveling with us on this journey, thank-you. We have been blessed with an army of support and love and for this we are so grateful. If love could cure cancer we would all be at home and safe in our beds. 

It has been a long and very hard road, and sometimes it seems impossible, but when I think back to the past four years, I remember more joy than sadness. When I think back I see feisty Phoebe and I am filled with hope.

We have come so far. 





Thursday, October 23, 2014

Phoebe

Phoebe is in the ICU. Yesterday evening she started having difficulty breathing and  she seemed to be in a lot of pain. The ICU doctor came to check on her and he ran some extra blood tests. The tests showed that Phoebe has lactic-acidosis - her blood is incredibly and critically acidic. We were moved quickly and the amazing team in the ICU got to work to help Phoebe breath easier.

This morning, her labs have improved. She is breathing easier and not as rapidly and she is now on blow-by oxygen rather than a mask, but there are still so many things going on. 

Phoebe's liver is very sick, she has an infection in her stomach, she is still having fevers, and she is struggling. They are not sure what has caused this most recent complication, but are working hard to figure it out. 

No one wants to be in the ICU with their child, but this close monitoring is what Phoebe needs right now and there is comfort in the careful and very attentive care that Phoebe is receiving. They are doing everything they can. 

Not all of the bone marrow results are in, but what we have from the aspirate shows that the level of leukemia is the same. This is after not receiving treatment for a month. With everything else that is going on, this is good news. Her disease, although it is still there at a low level, appears to be controlled. 

We are overwhelmed, anxious, emotional, desperate, and my heart just aches for Phoebe. We are taking things one hour at a time, and every tiny step forward, every bit of progress, is a victory.

Last night when we arrived in the ICU, Phoebe was wheeled into the room and the nurses got to work - hooking her up to the monitor, an oxygen mask, they inserted an NG tube (because Phoebe pulled her last one), and they put in a catheter. All of this was done while we spoke to the doctor about the many terrifying possibilities including a chance that Phoebe may need to be put on a ventilator. Phoebe didn't make a sound. I felt desperate. I just wanted to hear her fuss and see her fight, but there was nothing. 

This morning, she pulled off her oxygen mask, attempted to pull out the feeding tube, and although her voice is very weak and at times she is difficult to understand, she told the doctor that she wants "the tubie in my pull-up out". She is sleepy and not herself, but that feisty and fierce spirit, it is there. 

Please continue to keep our sweet Phoebe in your thoughts and prayers. 



Tuesday, October 21, 2014

Tomorrow

We hoped for a peaceful weekend, and on Saturday we seemed to be turning a corner. The pathologists reported seeing some monocytes in Phoebe's blood - these are often the first sign that the bone marrow is recovering, and the doctor noted that although Phoebe's temperature was still high, she had been without a very high fever for 24 hours.

On Sunday, the monocytes were gone and to add to the confusion, Phoebe started to develop a rash that now covers most, if not all, of her body. The rash seemed to bring back the high fevers and they have persisted since and are at the highest they have been.

It is a rollercoaster. Bright and early Monday morning we had a visit from the surgical team. After speaking with them and going over the many risks, we decided not to move forward with the surgery. Our days are a long drawn out conversation about risk and benefit and on Monday, the risks far outweighed the benefits. Phoebe still has no immune system. She has ongoing issues with her liver and the clotting factors in her blood. She has an infection in her belly and something in her lung. She is weak and tired. The surgeon was blunt and to the point and he said many things that were incredibly difficult to hear, but we needed to hear them. We just couldn't put Phoebe through something that had the potential to take her from us. We feel overwhelmed and confused and desperate but also relieved. It just didn't feel right and our talk with the surgeon only clarified that. Today, the doctors are still trying to fix the clotting factors and so it is clear that we made the right decision. I believe that this is Phoebe's way of telling us that yesterday was not the right time for the surgery. She is telling us, that she needs more time to heal. If the surgery is deemed necessary for her overall healing, we will revisit it when (not if) Phoebe is feeling better.

Because of the issues with the clotting factors in Phoebe's blood and the persistent fevers, the bone marrow tests and skin biopsy were also put off - first to today, and now until tomorrow.

We are anxious for answers. The bone marrow results and skin biopsy will hopefully help to guide us onto a smoother path. 

Today, Phoebe sat up in her bed to play on her Granny's IPad - she seems more comfortable, a tiny bit less irritable, and she has even had some water to drink. The liver numbers that have been steadily climbing over the past two weeks, have now started to come down - they are still very high and falling very slowing but they are coming down. Today the monocytes were back and we are hopeful that they are here to stay.

The persistent and high fevers are incredibly worrisome and scary, and not knowing exactly what is causing them and how to treat it makes them more so. We hope for answers. We hope to turn a corner, and we hope for relief and healing for Phoebe.

We will try again tomorrow.

“Courage doesn't always roar. Sometimes courage is the little voice at the end of the day that says I'll try again tomorrow.” Mary Anne Radmacher

Friday, October 17, 2014

Fresh air


Yesterday, Phoebe had an MRI of her brain and a CT scan of her belly, lungs and pelvis. There once was a time when writing something like that down was difficult. Today, all of this just seems normal although I know it is the farthest thing from that. The last two weeks have been some of the hardest weeks we have ever had and each day brings new challenges, questions, worries and fears. We are taking things one day at a time.

The MRI shows improvement. This is good. The medicine that was helping with this has since been stopped however, and the doctors are discussing if they need to start it again to optimize Phoebe's recovery. The reason it was stopped is because it can suppress the bone marrow and we desperately need Phoebe's bone marrow to recover. Each day is a long discussion of risk versus benefit and there are no clear answers. The CT scan shows that the spots on Phoebe's lungs that the doctors think are fungus, are bigger and overall her lungs look worse. This is not good news, especially considering that Phoebe is being treated for a fungal infection with the best medicines that are available. The doctors are all putting their heads together and the surgeons have also looked at the scans and they have weighed risk versus benefit and decided that the best way to give Phoebe a chance to beat this is to go in surgically to remove one of the lesions. They will be unable to remove both as it will simply be too dangerous and too invasive for Phoebe. The lesions, or spots, are not on the outside of the lungs, rather they are close to the heart, which makes all of this more complicated. As usual, Phoebe is taking the long and hard road.

The surgery is tentatively scheduled for Monday. It is major surgery and we are completely overwhelmed, worried and scared, but we are also hopeful that once completed, Phoebe will have one less burden standing in her way to a complete recovery. We will also finally know exactly what these spots are and hopefully be able to tailor treatment.

Phoebe is doing okay. She is sleeping most of the day and when she is up, she is not interested in doing very much. Today we were able to get outside for a walk around the hospital grounds which was nice for all of us and Phoebe seemed to enjoy it. Each time we stopped to look at something, she told me to keep walking but when we started walking back to the hospital, she cried that she wanted to go home. I think she thought we were walking home like we used to do. One day we will.

We have small victories each day. Today,we got out for a walk, we saw a tiny decrease in Phoebe's liver numbers, and we have a tentative plan to move forward. These little things and Phoebe helps us put one foot in front of the other.

We hope this weekend will bring rest and recovery for Phoebe. We hope to see some count recovery and we would love to see some smiles. Each day we wake up and anxiously look at Phoebe's labs, hoping for signs of recovery - looking for the strong, healthy and mighty cells that we believe are there. We need them to help Phoebe fight all of these battles. We hope this weekend brings some relief for Phoebe and some help in this fight.

Yesterday evening we spent a lot of time talking with Phoebe's doctor about all that has been going on. We went over all of the test results and at times I felt like I couldn't catch my breath. At the end of the discussion, and after hearing all that stands in Phoebe's way, he said "this is not a hopeless situation". He then went over everything again, this time starting with and focusing on all that Phoebe has done. He talked about her remission, the improved MRI, the strength we are seeing in her left arm after the stroke, and the pure and mighty strength that is Phoebe. Hope is a beautiful thing and although I wish didn't have to cling to it with everything we have, I am so thankful that it is shared.

Please keep our sweet and feisty Phoebe in your thoughts and prayers.

We believe. 

Here is Phoebe, outside for the first time in over two weeks. 




Wednesday, October 15, 2014

Two weeks

Today marks two weeks in isolation and in the hospital for Phoebe. When we arrived with a fever two weeks ago, we never imagined that we would still be here and that so many things would be happening. We never imagined that so many things would be going wrong.

Phoebe has had countless fevers over the past 4 years. Most of the time we would find an infection of some kind, treat it, and Phoebe would be home or be better within 48 hours. Sometimes nothing was ever found to be the cause, but she would still be better within a few days. This is not like that at all. In fact, despite all that she has been through, I can't remember a time when Phoebe has been as sick as she is today. It feels like just as some things begin to fall into place, other things fall apart. We are seeing improvements following the stroke, but Phoebe is still having fevers and she is just not better.

I hesitate to write all of this down because, to be honest, most of the time, I am writing through tears and it is just so hard. I appreciate everyone who continues to read and follow and pray for Phoebe.

Today all of Phoebe's doctors, and there are now many, sat down to discuss Phoebe's many issues. They have decided to make a few changes with the hope that it will help Phoebe recover from these infections while minimizing the side effects from all of the medications. Phoebe is still having fevers, they seem to be less frequent, but they are still very much there. She has inflammation in her gut. Her liver is showing signs of distress that has yet to improve. She is miserable, sad, and depressed. She is still neutropenic with no white blood cells in sight, and today she required another blood and platelet transfusion. For some perspective - most people have at least 150 platelets in their blood and this morning, Phoebe had 9. Most people have a hemoglobin of around 12, today Phoebe's was 5.8. These are critically low levels and without the help of blood donors, we would not be able to fight the many problems and issues we are fighting. We simply wouldn't have a chance. To all of you out there in the world who donate blood and platelets, thank-you.

The doctors are trying everything they can and for this we are grateful. There are no clear answers right now, no right path to take, and there is no one that can tell us what will happen. We can only surround Phoebe with as much love as possible and hope that things will start to improve. Phoebe has shown us over and over again that anything is possible, and we will always believe in her. She is amazing.

Please continue to keep Phoebe in your thoughts and prayers. Tomorrow she will have a repeat MRI and CT scan to monitor the progress of the infections that were seen on previous scans.

Monday, October 13, 2014

Thanksgiving

We are counting our blessings. 

We are hanging on and although we have had many dark days lately, days filled with worry and fear and sadness, we have glimpsed the light at the end of this tunnel and we are clinging to the hope that we see in it.

In honour of thanksgiving - this post is for all we are thankful for. Despite our struggles, there is always something to be thankful for.

Above all else, we are thankful for Mae and Phoebe. 

We are thankful to be here at St.Jude and for each and every person both here and away who has cared for Phoebe. We truly have been blessed with an amazing medical team and as Phoebe gets more complicated, this team just keeps getting bigger. Today Phoebe saw her leukemia and infectious disease doctors and nurses, but she also saw physical therapy, music therapy, speech therapy, child life, and psychology. She is more than the disease that brought us here and the focus on getting her back and better is strong and determined. Phoebe is not happy about all of these visitors , but for us, they represent hope. Among these therapists are people who, years ago, first helped to teach Phoebe to stand and bear weight on her legs, to walk, talk and eat. 

We are thankful for medicine, science and research. Phoebe's leukemia has responded to the treatment - or the amount of treatment she has received as we still have yet to finish the course. Under a microscope, no leukemia was detected. This means that technically, Phoebe is in remission. The more sensitive tests have detected leukemia at a low level but we are making progress and this response is a much needed and big step forward. 

We are thankful to have the chance to continue to fight this disease again and for the time that this gives us. 

Phoebe is still struggling with many things and her body is tired, but there are many people working to help her get better and we are seeing progress. She is still having fevers but they are less frequent and the marker for infection in her blood is slowly and consistently coming down. We still have very far to go, but we are making progress.

We are thankful for progress. 

We are thankful for Phoebe's strength, her spirit, and her stubborn determination. She has now pulled out her feeding tube twice in two days. Although we are not happy about this, how she has done it has given us a beautiful glimpse of feisty Phoebe. Last night she asked her Daddy to go and get her a glass of milk, knowing that he would jump at this because we are desperate for her to eat. When he returned, she was holding the tube in her little hand. The night before, she carefully and quietly pulled off all of the stickers and bandages that were on her body. She pulled off the leads for her heart monitor, the sticker on her toe that measures her oxygen saturation, and the band aids from former IV lines ... and then she carefully pulled off the stickers on her face and out came her feeding tube. 

Today the doctors were discussing how to get the feeding tube back in - we need it in to give important medicines that Phoebe refuses to take by mouth, and for much needed nutrition. After discussing how to do this, the consensus was that Phoebe is just too smart for all of us and the tube can stay out for 24 hours to see how she does. Phoebe has told us that she would like to try to eat, and so we are listening to her. 

We are thankful for family and patient centered care and for doctors and nurses who take the time to listen and hear us. 

We are thankful for family and friends and for the kindness of strangers. We couldn't do this without the help and support and love that we receive from these wonderful people. This weekend was not a typical thanksgiving but we did get a brief glimpse and hugs from family and Mae was so happy to be briefly united with her cousins. 

We are thankful for time. Right now that is time to heal and rest and recover. 

We are thankful for all of this and so much more.

Happy Thanksgiving Canada.

Be thankful.