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 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. 








Saturday, October 11, 2014

Just keep swimming

A short update. Phoebe's MRI looks better. The spots are still there but according to the neurologist there is improvement. We are anxiously waiting for bone marrow results and we should know those on Monday. 

There is a lot going on and it is overwhelming and so difficult. There are still no clear answers as to why Phoebe is so sick. All of the tests sent for viruses and fungus have so far come back negative, but they are still looking. Phoebe is still having fevers. She is completely neutropenic. She is not herself. She is tired, weak, upset, and irritable. She hasn't sat up or got out of bed since last week and we are hanging on and desperate for some sign that our girl is getting better. 

Phoebe has been watching Finding Nemo on repeat for the past two days. This is a pleasant and surprising change from her usual pick of Frozen and Brave and we are so very happy and thankful to watch with her as last week we were desperate to see her eyes. The message in Finding Nemo is clear - Just keep swimming. Have faith. Never give up.

Choose hope. 

Phoebe is with us today because we have done just that. 

Please keep Phoebe in your prayers and thoughts. Please visualize healthy cells and a strong and healthy Phoebe. She is the bravest and strongest girl I know and she is working so hard to get better. 

Just keep swimming Phoebe. Just keep swimming. 




Tuesday, October 7, 2014

Hope today came in a very small and sweet smile from Phoebe, a few sips of water, time in the rocking chair and the first time Phoebe has wanted to be held in days, and the news that the spinal fluid is clear of Leukemia.

The spots on Phoebe's brain are most likely from infection which is terrifying but somehow not as terrifying as leukemia. Unlike we thought previously, this did cause her to have two strokes. One on the left side of her brain and another on the right. The strokes have affected the  movement on her left side and her speech. She is talking but her speech is very slurred. We saw the neurologist today and he is monitoring them closely with MRI to track progress. Phoebe has her next MRI on Monday and they will also be looking at her spine and hopefully doing a bone marrow aspirate.

Phoebe hasn't eaten in over a week and so today we decided to put in a feeding tube. She knows all about this tube and when she heard it mentioned she started to cry and put her hand in front of her nose to block the nurses. It has been two and a half years since Phoebe's last feeding tube and this was really hard for me although I know that it is a necessary step to move forward. I was holding on to hope that Phoebe would wake up and just want to eat. Nutrition is so important and the feeding tube will help give Phoebe the energy she needs to heal. 

We are now on step down in the ICU so Phoebe has moved another step in the right direction. She is still having fevers although they are not as frequent, and she is being monitored closely. 

One step at a time. 

There she is. Amazing and strong Phoebe Rose. 






Monday, October 6, 2014

Hope for Phoebe

It has been an exhausting and very emotional day. Phoebe has not been able to eat due to the sedation today as well as the seizure and possible stroke and the chance that they could have affected her swallowing. She went to bed last night crying out for food, water, juice, milk, her favourite soup, a banana, a cookie. She woke up crying for the same. Her speech is slurred, but she is making sense and just kept asking and then demanding I bring her something "this instant". Phoebe hasn't really spoken to us in days. To hear her voice pleading with us and to have to tell her, no, she cannot have these things, and to not be able to bring her every single thing that she asked for broke my heart again and again. These are the things that I can control, as her mom. I can feed her and bring water and juice. I can try to make her happy. It is a terrible and helpless feeling to not be able to do this. I would wake up every hour on the hour to feed and soothe Phoebe if she wanted me to. I would hold her and rock her all night long if that would help. 

Phoebe was scheduled for an MRI of her brain, a CT scan of her belly, lungs and sinuses, a lumbar puncture, and an EKG. She had all of this and had her line pulled, and three IV lines placed all while she was sedated today. This required a significant amount of planning and preparation by the staff at St.Jude. We are grateful as doing this saved a lot of trauma for Phoebe who has had enough. 

Phoebe is still resting after her long day and she has not yet woken up from the sedation. We do have some results from all of these tests. Phoebe did not have a stroke and doesn't have any clots in her brain. The doctors think that she did suffer from a seizure and so she will remain on the anti-seizure medication. The spots on her brain are either an infection or leukemia. The doctors think it is an infection but we are waiting for the results from her spinal fluid to know for sure. Her spinal fluid has been clear of leukemia for years. Years, and we are clinging to that hope. 

There is also a fungal infection in Phoebe's lungs. We have never had to face a fungal infection before or an infection in the brain, and to be honest, we are just terrified. I have never been more terrified. We know because we have been on this road for many years, just what we are up against. Phoebe has some huge mountains ahead of her and she will need help to climb them. We had a wonderful nurse practicioner in the ICU tonight, who after we heard all of this news, stayed in Phoebe's room to talk. She told us how strong Phoebe is and how far she has come. She talked to us with hope about all of the ways that Phoebe can fight and beat this. We needed this gentle reminder of the power of hope as today has been at times, incredibly dark. 

The good news, is that Phoebe is currently being treated for all of these things and the infected central line is now out. She has also regained strength in her arm that was completely limp and weak today and yesterday. Another small victory. We now wait and hope. Wait and hope and watch as Phoebe gets better. 

Phoebe's behavior has been different both since starting this relapsed treatment and now since her seizure. She is irritable, angry, upset and often inconsolable. She is not happy and joyful. She is not herself, but occasionally, and thankfully, there have been glimpses. The doctors think that this behavior is related to the spots that were seen on the brain CT and MRI. It is heartbreaking and cruel that this has happened to her and we can only cling to hope that she will once again look at us and smile. Phoebe has a strong and beautiful personality and something as bright as her spunk is not so easily broken. 

We believe but right now, looking any further ahead than today is too difficult. Today is what matters right now. We made it through this day and we now have most of the answers that we need and we can continue to move forward to help Phoebe to get better. We will never give up on our girl and we will be by her side every step of the way. 

Thank-you for continuing to support us through this very long journey. We received many beautiful messages of hope today as well as many kind donations. We really wouldn't be able to do this without help and we are incredibly grateful. I like to think that all of your love and hope is surrounding Phoebe right now, and this brings me great comfort. I imagine our love and hope surrounding Phoebe and our collective voices whispering to her that tomorrow is a new day, a day for healing and progress. 

You can do this sweet Phoebe. 

Mae met Katy Perry today at the hospital. She was visiting and we saw her right after Phoebe went in for all of her tests. Mae and Phoebe love the song "Roar" and used to sing it all the time. I can't help but think that this is a good sign, and Mae was so excited to meet her.