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, May 12, 2015

The makings of a miracle ...

We are back at the Target House, returning to St.Jude daily for labs and an antifungal medicine that can only be given in the hospital. We are busy - caring for Phoebe is a full-time job, but we get to sleep in our own beds at night. It's the little things. 

Against all odds, Phoebe has been doing well. She is getting stronger, and although she has a long way to go, things are improving. She is still weak, but she surprised us by riding her bike the first day we were home, and today she walked for the first time in three weeks. The fungal lesions are very slowly healing. It is a painful and slow process but we are starting to see some improvements.

Phoebe's bone marrow results show a very low level of disease (less than 1%) and an improved chimerism. I like to think the leukemia is "stable" and we are relieved that the clinical trial was successful. There are some signs of count recovery - Phoebe is maintaining a very low ANC and needing fewer platelet and blood transfusions. She will receive another unit of my granulocytes on Friday and after that ... decisions and plans are made one day at a time. 

We are hanging on, grateful for progress and hopeful for continued miracles. 

And now from Phoebe's Daddy who can tell it like it is far better than I can ... 

"I couldn't hold back the tears today. 3 weeks ago Phoebe was diagnosed with a very serious systemic fungal infection. Fusarium fungemia. If you google it you'll find that in someone like Phoebe who has no immune system there is a 100% death rate. The first thing the doctors did was to call in the quality of life team to ask us our expectations of the hospital when Phoebe's life was to come to an end. Instead, we fought for treatment using Jenny's white cells and 4 anti fungal antibiotics to build a bridge so Phoebe could gain some time for her own immune system to have a chance to return as we get further out from the last experimental trial which she responded well to. We fought for life. Today I cried. I cried because the bridge we built is holding. Phoebe's blood work today shows her immune system is in recovery and with it we will defeat this horrendous fungus. I absolutely love how Phoebe continues to put doctors on the side of hope. I believe".





Sunday, May 10, 2015

Go Phoebe go

Phoebe is out of the ICU. It was a short stay - just twelve hours until we were back on the regular floor. In typical Phoebe style, she had a room full of very worried doctors, but she appeared to improve without any intervention as soon as we entered the ICU. In fact, as we wheeled her in her bed through the halls towards the ICU she perked up and pointed out the murals and pictures on the walls. It was and is very serious, but in that moment, it seemed that Phoebe just wanted to take a ride outside of her little room. 

We are now back on the regular ward and things are slowly improving. We are cautiously optimistic. Terrified but always hopeful. Phoebe is fighting and so we are too. 

Here is what we know ...

What we once called a rash is fungal
lesions that cover Phoebe's face, legs and arms. Most have turned black and are angry and painful. It is as awful as it sounds, but they are not as painful as they once were and there are no new lesions which is a good sign. They do have a lot of healing to do and they make Phoebe sad. When we ask her if she is feeling better, she says "no, because these spots are just not going away". 

The granulocytes are helping to temporarily boost Phoebe's immune system which together with the many medicines she receives is helping to clear the infection, but she still has very few signs of count recovery. We need count recovery and in the absence of this, Phoebe will probably continue to receive granulocytes. The plan is very much one day at a time. 

The infection/inflammation marker in Phoebe's blood is coming down and took another big jump in the right direction today. 

The CT scan of Phoebe's lungs shows the same small lesions from the previous infection and some other "gunk". The granulocytes were given right before the scan so things may look worse as they cause inflammation. 

We finally have negative blood cultures. 

Phoebe is still needing blow by oxygen, mostly just when she's sleeping and her breathing has improved. 

Today, our infectious disease doctor told Phoebe that she was their "most improved patient". Go Phoebe go. 

Today, Phoebe colored a picture and wrote her name for the first time in weeks. 

We love her so much. 

We are following Phoebe's lead and hopeful that she will be able to leave the hospital soon. We are still isolated, so when Phoebe is in patient she spends every day in a little room. It's hard and she usually shuts down and refuses to leave her bed. She is depressed and some time outside of these walls would do a world of good.

Mae is busy making friends and dates to colour with many of the nurses. She is surrounded by love, support and friendship and for that I am so grateful. Phoebe's nurses are beautiful kind souls who recognize her for the unique little person that she is and care for her with incredible patience and understanding while always making time for Mae. 

Thank-you all for continuing to think of Phoebe and our family. Your words and kindness help us through. 












Wednesday, May 6, 2015

ICU

Today Phoebe was transferred to the ICU. She received granulocytes last night and early this morning and although things seemed to go smoothly, by this afternoon, she was breathing very fast. She was struggling to breathe, needing more oxygen and just working too hard. Our room was full of people - nurses, a nurse practitioner, a respiratory therapist, fellows, the attending physician for the leukemia floor, and the ICU attending. Thankfully, Mae was being entertained and kept busy with some wonderful nurses and volunteers. Phoebe had an X-ray and more blood tests to check blood gases both of which looked okay, but within minutes of the ICU attending laying eyes on her, we were on our way to the ICU. 

As I write this, Phoebe is settled in the ICU. She is still on blow by oxygen - mostly because she refused the nasal cannula - and the amount of oxygen is greater. She is still breathing quickly and we are worried. So very worried. 

We are not sure what is causing her breathing difficulties but we are hoping it is "just" the granulocytes going to work on this horrible infection and things will calm down soon. 

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


Saturday, May 2, 2015

Hospital life ...

It has been a long and busy two days. Some mistakes were made with Phoebe's care and we are exhausted. 

Yesterday morning I went to the blood donor room to give my granulocytes. Phoebe's labs were drawn at 4am and her platelets and hemoglobin were low - her platelets were critically low. Before I left her room just before 9, they had been ordered and all was well.

Jon stayed with Phoebe and Mae and when I got back after noon the blood was just about to start - a blood transfusion in someone Phoebe's size can take up to three hours, but platelets are much faster. The platelets should have been given first. By the time the blood started, Phoebe's nose was bleeding, her poop was dark and tested positive for blood, and she had a huge bruise on her eye lid. Her blood wasn't clotting and so she was bleeding. By 5pm there were still no platelets and even Phoebe started asking where they were. I write asking, but she was actually shouting "I need platelets!! Where are my platelets!!", as she wiped blood from her face. Even at four years old, she knows better. 

The platelets were finally started at 5:30 pm - over 12 hours after they were found to be critically low. Phoebe spiked a fever soon after they were started which was  probably because she wasn't getting the Tylenol that was scheduled every four hours to keep ahead of the fevers (we had three different nurses in one shift yesterday and it was pure chaos). Because of the timing of the fever, it was documented as a transfusion reaction and the platelets had to be stopped. Despite the fact that Phoebe desperately needed them, they were stopped, sent back to the lab, and another unit was sent for. All of this and Phoebe still needed the granulocytes - and they expire. 

The first unit of granulocytes was started in the late evening and finished in the very early morning with no problems. The next unit was supposed to be given shortly after, so we finally went to sleep - Jon with Phoebe, and Mae and I in the parent room connected to Phoebe's room. 

After very little sleep (beeping pumps, pull up changes, watching and worrying about Phoebe) Jon woke up early this morning and noticed the granulocytes were missing from Phoebe's pump. He quickly went to get the nurse to tell her that they would expire and to ask where they were. Despite his efforts, they didn't arrive in time. I woke up to Jon telling me that I needed to come into Phoebe's room because the second unit of granulocytes had expired. The granulocytes that I spent 3 hours donating for Phoebe - the cells that I am only allowed to give six times in six months. These precious cells that Phoebe isn't making on her own but desperately needs to fight this fungal infection were wasted. 

I can't put into words the sadness and just pure frustration I felt this morning. Everyone was frustrated but no one seemed to know how the mistake was made. After the day we had yesterday - a day filled with too many careless mistakes and chaos, I am not surprised that this bigger mistake was made and that was the consensus at the end of the day - the chaos of yesterday led to mistakes today. 

Phoebe's situation is so fragile and precarious, she just can't afford any mistakes. 

Today, however, is a new day and we are moving forward. As the doctor said this weekend - the good thing is that Phoebe is stable. She is, and she did receive some granulocytes so all is not lost. The inflammation marker in her blood is slightly lower, she is not requiring any oxygen and there were some signs of count recovery, but the latest blood cultures were still positive for fungus so there are also a lot of reasons to worry. The doctors have made some small changes to Phoebe's antifungal medicines and the plan is to continue the granulocytes next week. 

I very rarely "vent" or write about mistakes and frustrations that happen in our day to day hospital life, and I think it's because we are usually just so grateful for the many amazing people who care for Phoebe - they are incredible and we are grateful - we always are - but today after all that has happened I just needed to vent a little. 

We are holding on to hope and grateful for any progress. Last night despite the chaos and stress that Jon and I felt, Phoebe was up and asking to play and watch movies. She even had some snacks. She is still having high fevers and she has a very long way to go, but we are taking things one day at a time and always hopeful. 








Thursday, April 30, 2015

Phoebe is okay - she had a restful night and she is still resting today. She is still having fevers and they seemed to be higher and not as easily controlled since the cells, so she is now receiving IV Tylenol every four hours so we can hopefully stay ahead of the fevers and her high heart rate. So far so good. She is off the blow by oxygen with 100% oxygen saturation on just room air - this is good news. Her blood work looks okay - despite the addition of many new medicines to treat the fungal infection, her liver and kidney function look perfect. The inflammation/infection marker in her blood is very high and it has continued to rise. We are hoping the jump it made today is a result of the granulocytes and not the infection getting worse. Tonight I will get another shot of GCSF to boost my white blood cells so that I can give more granulocytes for Phoebe tomorrow. 

We hope for more progress, more healing, and more smiles. 

Thank-you all for continuing to keep Phoebe in your thoughts and prayers.

Wednesday, April 29, 2015

Phoebe received her granulocytes last night and early this morning. Before the granulocytes, she was not herself, but she was up and doing crafts. As the cells were given through her PICC line, she became irritated, restless and started to cry out in pain. Her heart rate started to climb and after a day without needing the blow by oxygen, we turned it on just to be safe. It was a long and restless night, but Phoebe eventually settled a few hours after the cells finished infusing. 

This morning she received the second bag of cells (I donated once but because there was a lot of volume, they were able to split them into two units). She is still very restless, anxious, and not herself. She is trying to sleep but just can't seem to get comfortable. Her ANC after the first bag of cells was 1300 - this is a big and sudden jump from zero and is all my cells as Phoebe is still not making her own - it is higher now after the second unit. These cells are causing a storm inside Phoebe's little body as they search out the infections that fill her blood and cover her skin and this is causing inflammation, a high heart rate, more rash, pain and rapid breathing. Despite all of this, I am visualizing these cells doing what they are supposed to do and going to work on the fungus and any infections that Phoebe has. Bringing light and healing to this very dark place. I hope that we start to see some of this healing soon.

This is so hard. 

Yesterday, we had more impossible conversations with doctors and in these conversations we went to places that I hoped to never go. We were walked through impossible scenarios and asked to think about things that no parent should have to think about. This is our reality and it is terrifying. While the doctors spoke, I just kept thinking - this can't be happening. How did we get here? This fungal infection combined with Phoebe's refractory leukemia make this situation very serious, and we left the meeting sad, overwhelmed and broken. We are clinging to hope and to the very small chance that Phoebe has to be well. After all, she has overcome impossible circumstances and odds before. Anything is possible. 

The plan is to support Phoebe through the struggles caused by the granulocytes and to give more cells on Friday if she has fully recovered from the ones that were given today. 

We will keep taking things one day at a time and putting one foot in front of the other. 

Please keep Phoebe in your prayers. Hug your kids and the people you love. Hug them tight and tell them every single chance you get that they are loved. 





Friday, April 24, 2015

Today ...

Today was long and overwhelming and just sad. 

It seems that whenever we take a step forward, we also take a few steps back. 

Yesterday, we thought Phoebe had a yeast infection in her blood. Today, the culture grew to reveal an aggressive mold. This is also the cause of the angry and painful rash and it grew despite the fact that Phoebe has been receiving a medicine for the past seven months that would be used to treat it. She was receiving this medicine for her other fungal infection that thankfully appears to be under control. It grew because Phoebe has been severely neutropenic for months. 

We spoke at length with the infectious disease doctors and Phoebe's oncologist  about this new fungal infection. It was an impossible conversation that no one should have to have. Among many things, I remember them saying "it is bad" and then with sadness that they will do all that they can - no assurances - just the promise to do all they can with what they have. 

Phoebe has no immune system - to fight this infection and heal long term, she needs an immune system. To help things in the short term, they are adding two additional antifungal medicines - one was started on Wednesday and the second was started today. Phoebe will also receive granulocyte infusions, harvested from me and given to her twice a week for as long as they will let me give them. This is a temporary fix for a broken immune system. 

Phoebe's bone marrow results are MRD negative which is amazing and a huge blessing in all of this, but this result is with an empty bone marrow. There are very few cells and because her leukemia has returned again and again and again, the worry is that the immune system that we so desperately need may not recover or when it does it will also recover leukemia cells. 

Our minds and our hearts are heavy. We are holding on tightly to hope and doing all that we can to support Phoebe and surround her and Mae with love. 

How is Phoebe? Phoebe is not herself - she is tired and still requiring blow by oxygen, she is still having high fevers and her rash is still painful. Despite all of this, she stayed up late tonight to finish putting together her new lego, she laughed with Mae (who was placing very real looking plastic bugs on Phoebe's pump and scaring her nurses), and she sang and bopped her head to her favourite songs. This last thing is my most favourite thing to watch. She is always bright and shining Phoebe Rose. 

Here is what Phoebe often insists plays on repeat in our room so she can bop her head and sing along ... 

https://m.youtube.com/watch?v=DJ-grAoireo

I have walked by this sign at St.Jude everyday we have been in patient. A gentle reminder to believe ...

Please keep Phoebe and her big sister Mae in your thoughts and prayers.