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. 

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. 

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. 

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. 

ICU

Phoebe is in the ICU. She had something that looked like a seizure or a stroke earlier today and was rushed to CT for images of her brain.

The images show something on her brain. It could be from a stroke or infection, or it could be related to leukemia. 

Tomorrow she will have an MRI of her brain, a CT scan of her entire body, an LP, an EKG, and her line will be removed because her blood cultures are still positive for bacteria. She may also have a bone marrow aspirate. She will have two IV lines put in for access so that she can continue to receive antibiotics, anti fungals and now also anti-seizure medicine. All of these tests should give a better picture of what is happening. We are taking things one day at a time.,

This is just so cruel and my heart aches for Phoebe. I have never been more afraid or felt more helpless. Holding Phoebe today and watching her as she was having a seizure was the hardest thing I have ever done. I can't put it into to words and I don't want to. 

Phoebe is sleeping now and peaceful. She is still having fevers. She has regained some movement of her arm that was completely limp earlier and although her speech is slurred, she is making sense. As we were going to the CT she pointed to a new playroom and said "what's that? Can we go there when I'm all done?" It was the most words she has spoken in days. These are small victories and Phoebe is amazing. 

Phoebe has an incredibly long day ahead of her tomorrow, please surround her with as much love, hope, prayer and positive energy as possible. 

We are still in the hospital. Phoebe has a bacterial infection in her blood that is resistant to one of the main antibiotics used for treatment. They are treating it with another drug and so far, her blood cultures have been negative for 24 hours.  

Despite these negative blood cultures, she is still having very high fevers and so tomorrow she will also have a full body CT scan to look for a possible fungal infection. They have started treatment for a fungal infection just in case as the high fevers on antibiotics suggest that this may be another problem. 

She also has a sore in her mouth, around one of her crowns, that could be an abscess although without any immune system to mount a response, it is hard to tell. It could also be a virus. It doesn't appear to be fungus so that is good. Tomorrow the dentist is also going to have a look. 

She is tired and sleeping most of the day. She isn't eating or drinking. She is depressed and sad and angry and I hurt for her. My heart aches and I just want to see some signs that she is getting better. 

How does this happen? How did we get here? 

Phoebe has been neutropenic for months. She has no immune system. She has nothing to fight viruses, bacteria and fungus and this is terrifying. This is what cancer and the treatment for cancer does.

The reason we are here, the relapsed leukemia, is always in the background. It never leaves our minds, but right now, these fevers and other issues are at the forefront. Phoebe will not receive the last four days of treatment for her relapse until she heals. She needs to heal. 

We have dodged a million bullets up until this point and we can only hope and believe that we will continue to do so.

We believe that Phoebe will be okay. We have to. Right now that is all we can do to keep from completely breaking down. We are taking it one day at a time. 

Phoebe will go in for her CT scan tomorrow morning. Please pray that there is no fungus. Please visualize clean and clear scans. Please send Phoebe strength and hope and love. 

Jon and I are alternating shifts at the hospital and last night as Mae and I were leaving, the stars were out and bright and she looked up and said she wanted to make a wish. She told me that she wishes we were home and that her and Phoebe were in the backyard swinging. "You know, I am the one that taught Phoebe how to pump her legs". 

Today, I am visualizing a healthy and happy Phoebe, swinging so high that I am yelling at her to stop pumping her legs - she is laughing at me and her hair in blowing wild in the wind. Mae is beside her and life is as it should be. 

I can see her. 

We love you Phoebe

Phoebe was admitted to the hospital last night because she had a fever. She has been weak, tired, depressed and just not herself for the past two weeks and we have worried that something is terribly wrong. That is something terribly wrong on top of the terribly wrong that we deal with on a daily basis. 

We are still in patient and will stay in the hospital for at least a few days. Phoebe has a bacteria growing in her blood and central line. She also has zero white blood cells, so nothing to fight this infection with. She has been started on two antibiotics and spent most of today without a fever although her temperature jumped up again this evening. She is tired and slept most of today, leaving her bed only to go to the bathroom. 

She is scheduled to start her last pulse of steroids and chemo tomorrow, but her doctor would like negative blood cultures and no fever for at least 24 hours before we do this, so it will be delayed. We may also hold the steroids as last week the combination of drugs was thought to cause a very low heart rate. This by itself is terrifying. 

In her own way, Phoebe is telling us that she needs a rest. 

When we began this journey, almost four years ago, I remember the first month as one of the hardest. Phoebe was a 9 week old baby and like all parents do with a new little one, we had just started to admire her beautiful smile and listen to those sweet little coos that only babies make. Then it all stopped. Phoebe didn't smile for weeks and I remember worrying that we would never see her smile again. I questioned what we were doing and felt intense guilt that is only stronger today because of all the pain that she has suffered. 

Then Phoebe smiled again and like magic, the worry washed away. Or at least for a moment we were at peace. As I have watched Phoebe sleep the days away for the past two weeks, I have thought often of those days and the relief that came with the sight of Phoebe's beautiful smile. It has been almost four years since we began this journey and at times it seems impossible that we have been fighting this for so long. Phoebe's smile and spirit has kept us a float. When I think back on the past four years, I realize that I don't remember days that Phoebe didn't smile as much as I remember the days that were filled with pure joy. I don't think about the pain and nausea, the hair loss, the fatigue and all of the time spent away from home as much as I think about and admire the two brilliant and incredibly smart and sassy little ladies that Jon and I have managed to raise against all odds, in complete and utter chaos. 

They are spectacular and together, we will make it through. 

In all honesty, these past few weeks have been among the most terrifying we have experienced over the course of this journey. There is a fear that finds its way into our everyday. Lately this fear has been hard to overcome. It finds me waiting in line for a coffee and reduces me to tears. It keeps me awake at night. 

We see Phoebe suffering, we miss her smile and personality, and we pray that at the end of this treatment, we will have made the right decisions. That this will be enough to move forward. That this will be our first step towards a life without this cancer. There is no set path or next step and we are up against incredible odds but we will always do everything we can to see Phoebe through this. 

Today we spent most of the day together in Phoebe's little room. Mae did her school work and Phoebe rested. Phoebe looked like she was sleeping, but occasionally when Mae would do something silly, she would break into the most beautiful giggle. Eyes open just enough to see Mae. 

We love you Phoebe.