Tree and Ocean have spent countless hours hanging out at the yoga studio… they have helped with all kinds of things around the studio. They’ve sat, laid and played in almost every corner of the space. Tree is one of those people that is just straight up a smarty, she ponders and observes and when she speaks you can’t help but feel like , “Ok, whatever she says!” Put a puppy anywhere near her or Ocean and they just light up. Pilar was like a little kid just a couple of weeks ago when she told us that finally her landlord had said yes to them getting a puppy.
Tree is in the intensive care unit at the children’s hospital in Winnipeg right now. On Fri Jan 8th a large tumour was removed from Tree’s brain by the best neurosurgeon in Canada. The surgery lasted 5 hours and was successful! The tumour was completely removed and an MRI revealed an 100% removal. We are so thrilled about this. She is slowly coming around. She has ups and downs. It will be a slow recovery. We will find out in 10 days if the cells in the tumour were cancerous.
Pilar and Ocean are in Winnipeg and remain there for the foreseeable future. The Moksha community is fundraising to support this family who is at the heart of our community. We call on all yogis and friends to help support Tree, Pilar and Ocean through this. Pilar is the primary provider for Tree and Ocean and as her community we want to do everything that we can. That’s what community is about, and holy cow do we have a big team!
Thank you for your support, this is how the word community reveals that it is a verb, an action word. We will keep everyone posted, please help us spread the word.
Our prayers and our love are one with Tree, Pilar, Ocean and their family.
We have come to the magic number 9...9 cycles out of 9 begins Thursday April 6th at BC Children's Hospital!! Its hard for me to express the range of emotions leading up to this day. I must say I have kept a lot of my journey these last couple months to myself. By that I mean, I have put forward my face and expression that tells the people I met, "I'm doing ok". Whether I say it or show it, I know I haven't been honest with my thoughts and feelings with people in my life. I'm guarded and scared. Its how I have coped to some extent.
As for Tree, she has been a warrior. Plain and simple.
One thing that keeps us from celebrating and shouting from the rooftops that this day has come, is that Tree has not gone for an MRI for over 3 months. As we are at the end of treatment, we were expecting scans at the end of March. This hasn't happened. And since we know that anything can happen when one has cancer, we wait for scan results to show us whats up. We wait for scans with a mix of dread and hope. Its an intense feeling.
Tree in the last couple months has felt very good. Of course, there have been nauseous days, days of headaches and low energy, low blood counts and being neutropenic, but there has also been energy and weight gain! It has helped her immensely to witness her body recover slightly. Her chemo schedule hasn't changed but she has managed to pull through the last two cycles with a fierceness and strength that is inspiring.
What she still experiences in her body that is attributed to brain trauma from surgery, radiation and chemotherapy, is ongoing balance issues, a tremor in her right hand and cognitive issues. She works hard to remember what has been said to her and to be able to follow instructions and relay information. Some days are better than others. This is a road to recovery that we really don't know how long it will take. She has become completely left handed and uses that hand adeptly to write, draw, paint eat etc. She still uses a wheelchair and walker but also now can ride a specialized three wheeled bike! Freedom to move and be outside is such a mood booster! We will visit soon with a neurosurgeon at BC Children's who will offer us insight into what is going on and steps to take with recovery. Physiotherapy visits are already happening and they are helping.
Her hearing has been severely affected by a type of chemotherapy that she receives. She experiences a constant ringing in her ears that is very hard to deal with. It is day and night, worse when her environment is quiet. In noisy or social situations, she needs people to be looking at her directly when they speak to her so she can read their lips or pick up cues from their body language. She's become adept at this but its a side effect that is frustrating and so unlike how things used to be.
Emotionally, as you can all imagine, this has been a roller coaster ride. I marvel at her strength but also hold her close when tears and sadness and loss are all that she feels. I can't tell you how hard it is to watch her suffer. To hear her wonder out loud what her life holds for her since so much of what she imagined for herself may not be possible. Her life is uncertain and she knows this. Its not something I ever imagined my 14 year old daughter would think about. It s heartbreaking.
My heart is in a space of sharing with you all what lies ahead and I thank you for reading a caring about us.
Sometimes I am so overcome with fear of losing my daughter. It overtakes by thoughts completely. Its an emotion I am learning to breathe through but often in quiet and alone moments all I can do is weep. She is my greatest teacher, my best friend and my beacon of hope. Through her smile and laugh and love, I know I can be strong. I know I can't let fear win. We have been playing a game of being hopeful and I'm committed to being hopeful. But this will be a life that is dictated by MRI scans for the rest of her life. By statistics and side effects from the type of cancer she has and the radiation she received. She will have scans every three months for the next 2 years. Then scans every 6 months for the next year. Then scans every year for the next 5 years. It continues like this for as long as she is alive.
My children and I have vowed to live in hope and in the moment. Its been hard work but its necessary work. This is how we will live, embracing life fully and truly living it. We want to love and be of service to this world. We want to travel and explore and not miss out on opportunities to say yes, when we know that this life is so precious but fleeting.
The future is uncertain, and this makes life so much more meaningful. Scary, yes, but we are not taking it for granted.
Thank you so much for reading and sharing our journey with each prayer you have sent and each deep breath you have taken for us.
Please know that your donations have let me be at Tree's side since January of 2016. Its how we have managed to live and have hope. Its how I have been able to keep my children's lives safe and happy. It has been a gift I don't know how to express adequately with words, but know that I love each any every one of you deeply and sincerely.
Deep bows to all of you.
Pilar, Tree and Ocean.
I'll begin this update by saying that in September Tree had her 4th MRI. She is tested every 3 months to look at the progress of her treatment (chemotherapy only at this point). I realized how anxious I was weeks in advance, praying and imagining scan results that showed improvement to the cancer site. We did in fact receive good news! The site which shows the most impression of cancer has reduced in size, slightly, and no new areas of concern appeared! Waves of relief and knowing that we step forward little by little always.
Tree is now coming up to cycle 7 of her treatment. 9 cycles in total for Tree, so we are close.
Because many of you ask, I wanted to give you a glimpse of a month in the life of Tree….how many times we are in hospital and what her day to day is sometimes like. I think this perhaps will be the best way to let you know how she is doing! I'll keep it short, but detailed :)
The beginning of a new cycle of chemotherapy is the prominent marker in Tree's life. I wish it was otherwise., but this is our new normal now and we have accepted it. Tree is admitted to the BC Children's Hospital in Vancouver at the beginning of the cycle. There is often a day of pre- testing before we start to check in on how the Chemo drug Cisplatin has affected her kidneys and hearing. So far, her the kidney tests have come back ok, no concerns (although long term damage is expected), but her audiology tests have come back showing damage to her her high frequency hearing. As of last cycle, the amount of Cisplatin given was reduced by half in hopes that no further damage would happen. She is on the cusp of needing a hearing aid, but this will be addressed after all cycles of chemo are finished and some time passes which in some kids, hearing improves over time.
We begin the cycle of chemo in the Paediatric Oncology clinic at BC Children's where she is hooked up to IV fluids to hydrate her as well as lines where the chemo will be given. Tree has a VAD line, or a port which is accessed every time she is in hospital. This port was surgically placed in Tree's chest near her heart in order for multiple IV's to be used and to diminish the amount of needles she would get over these many months of treatment. Even blood work is drawn from her port.
Once she is accessed, the needle and IVS stay for the rest of our time in hospital. Typically we are in Vancouver for 3-5 days at a time.
Once chemo is given though her IV, she also starts to receive meds to help with nausea and vomiting that will go hand in hand with chemo. We will move up to the ward later in the day and from there, nurses will monitor her. Blood work is taken a few times a day as well as checking her vitals and urine to make sure only the chemo needed stays in her body, the rest is eliminated through her urine. On the first night of being admitted, Tree has to pee every 2 hours! Needless to say, not much sleep is happening! As the days go on, Tree will feel very nauseous and unwell. Its hard to see her this way but I remind her (and me), that each new cycle is a step forward. She endures so much in hospital…from being accessed, which is very stressful as it can be painful, to how her body will react this time, lack of sleep, constantly battling the waves of nausea and sometimes vomiting, being hooked up to machines and monitors which don't allow her much freedom in movement. When we are ready to leave, we are pretty happy!
For the next 6 weeks after the cycle begins, Tree has a list of appointments at VGH in Victoria. She receives two more doses of a chemo drug called Vincristine. She has weekly blood tests to check on her levels of red blood cells, white blood cells, platelets and neutropils…these levels will determine if she needs transfusions, how her immune system is functioning and how her overall energy levels are. If her blood counts are low, we may visit the hospital up to three times a week and possible receive transfusions. If she is doing well, visits are only once a week. We know the date of our next cycle and we hope her body will have recovered and blood counts are relatively normal, so she can start this all again in 4 to 6 weeks time.
We went to the hospital to get a new tube put in, we tried the right side nostril this time to give the left a break, but something wasn't right from the beginning. Tree was in pain and discomfort all day and night. She was unable to get used to it as is normally the case. After two days of crying and hardly eating, we went back to get the tube taken out and placed in the other nostril…no pain! We think that her right nostril is shaped differently and perhaps smaller than the left. Who knew?!
Unfortunately, that same night Tree's stomach began to feel off. She had to run to the bathroom many times in the night. She had diarrhea all night. The next day she began vomiting. I called the oncology clinic in Victoria to let them know what was happening. As the day went on, she would have waves of stomach upset but it wasn't constant.We held off going into clinic. Evening came and she became more ill. She began to vomit more and more bile and liquid which at this point was green in colour. I called the paediatrician on call at VGH and he advised coming in straight away.
After 5 long hours in emergency where she became more and more ill, we were moved up to the ward. She is neutropenic, so she doesn't have the healthy white blood cells that a normal body does in order fight off any virus or bacteria. She was very dehydrated at this point too and she was so very tired. Her body was wiped. We were attended by nurses and doctors that were trying to figure out why her body was so unhappy. She had an X-ray to her stomach done to rule out any abnormalities in her bowels…thankfully the results came back with good news. After two long days of feeling very unwell and not being able to keep anything in or down, the heavy anti nausea meds she was on began to help. After 5 days in the hospital we were able to leave. It must have been a virus she picked up that because her immune system is so compromised, it hit her harder than most healthy people.
Her platelet and hemoglobin levels have been so low that in the last two weeks she has needed three transfusions. The most she has ever needed in such a short period of time.
She is still vey neutropenic so we continue to be vigilant against germs or possibly picking up any illness. This means that Tree is unable to go out in public places…she wears a mask most of the time, but now, even that may not help. Its the time of year where many people are ill.
I think for anyone, this would be hard. She can't go to the moves, visit with family or friends or even just go Christmas shopping. No visits to the library or bookstores. Nothing public. Her life is at the mercy of her treatment. Her life is so very different than other 14 year old teens. She missed out on so much. It breaks my heart.
Our next cycle of chemo begins December 15th. Her next MRI is December 15th. Its a big day.
So far, her blood counts are very low. If her numbers don't come up substantially, they will have to delay the next cycle by a week. This puts us at BC Children's over Christmas….I am praying this doesn't happen, It will be heartbreaking for Tree (and me), to miss the love and fun we have as a family over Christmas. All the traditions we have in place at home and with family. Blood work the day before we are set to start cycle 7 will tell us if we go or delay.
I will post more frequently on here so that you can continue to follow Tree's journey. This has been a glimpse into some of the details of her life. Every day is a blessing.
Tree is a fighter. She amazes her care team with her wisdom and kindness. She shows her sadness and fear but also sees joy and in her life. She is grateful. She can calm herself in moments of fear and pain. She is learning at a young age that life shouldn't be taken for granted, It needs to be lived even through hardship. We are all together in this and we have the greatest team on our side.
As a family, I say thank you! Thank you for reading and caring for us. Thank you for any donations made. I have been able to stay at home to care for Tree through all this with my mind on her well being, not on money, This is huge.
Blessings and love to all of you.
Pilar, Tree , Ocean and Ryan
Sending Tree loads of healing love, and we hope that you and your family feel the love and support you need to get you through this difficult time xo
Our thoughts are with you Tree, Pilar Ocean and Grayson.
Dearest Pilar, My heart goes out to you and your family. I was so honoured to have been a 'short time' nanny to Tree and Ocean. They are beautiful souls. Please let me know if you need any thing. Hugs to you .
Love is being sent to all of you....you are amazing Pilar and your children are fortunate to have you as their Momma. XO
My heart is with you and Tree Pilar