Go gold ...

Sitting here at CHEO waiting for Phoebe's blood work results and listening to a little girl screaming in the room next to us. Her screams reduced me to tears. She cried out for nurses to stop, to wait, that she couldn't take it anymore, that it hurt, then she cried for her hands. She just wanted to see her hands. Earlier in the day, Phoebe's nurse was reduced to tears at Phoebe's screams. Phoebe is so used to being poked and prodded that she rarely asks nurses to stop, or says she has had enough. She just cries. Today she was poked twice for blood work. Cancer is especially ugly today.

Phoebe's blood work results show extremely high liver enzymes. Her doctor suspects that she may be fighting a virus, but she is showing no signs or symptoms other than these very high liver enzymes. Phoebe's liver works very hard, it needs to to clear all of the chemotherapy and medications that she receives. It has been through a lot and we need it working well to continue on this path. Each time we hit a bump in this road, I worry. We have dodged many bullets and the fear of the unknown is real and terrifying. We are testing for viruses and will recheck her liver again next week. If the results are still high, her chemo will be put on hold. Fighting a virus and healing a tired liver is dangerous when you add toxic chemotherapy.

Phoebe's other blood work looks good. Her platelets are a bit lower than they are usually but are still normal, and her white blood count is also a touch lower than it is usually, but is still relatively normal.

September is Childhood Cancer Awareness Month. Please don't forget that kids get cancer too. Please honour these young people, that are fighting for their lives and living through so much pain. Honour their families. Phoebe has fought cancer for most of her life. We are grateful for each day but we live in fear. We rely on advances in research as without them, Phoebe would not be here. Plain and simple, she would not have survived her first relapse.

Awareness is key and there are many things that you can do this September to help.

You can tell the stories of children with cancer, you can wear gold, you can donate blood and/or platelets, you can register to become a bone marrow donor. You can give to an organization that supports childhood cancer research and children fighting cancer. Many large cancer organizations like the Canadian Cancer Society and the Leukemia, Lymphoma Society give very little towards children's cancer research.

You can attend our Childhood Cancer Awareness Rally on September 8th on Parliament Hill and like us on Facebook for more information and updates. www.facebook.com/gogoldcanada.

You can come to The Big Rig in Ottawa on September the 3rd between 3-4pm as Ottawa Mayor Jim Watson proclaims this day as Childhood Cancer Awareness Day. Phoebe Rose will be the Candlelighters' Ambassador and we are very honored to be involved. Thank-you Candlelighters for all that you do for families and children fighting cancer.

We need this story to change. Children should not be spending beautiful summer days screaming for help in a small hospital room.

I would love to hear about what you are doing to raise childhood cancer awareness this September.

Phoebe is Three!

Phoebe turns three today. She is busy and joyful and always has something to say. She is boisterous, tenacious and so much fun. She is amazing and has come so far. She is full of life. She is mine, and so I am biased, but she really is something special.

Each year we celebrate with Phoebe is amazing. We are so grateful to be able to watch her grow and thrive, despite all of the ups and downs and challenges that her life has brought her. To watch her you would never know the challenges she has faced, and if you ask her, she will tell you that she is just fine.

After what Phoebe has been through to be here, each day is a big day and reason for celebration, but birthdays are extra special. I have been reflecting a lot recently on Phoebe's journey and on all of the people we have met who have helped her to be who she is today. We have a lot to be thankful for and many people to thank.

I always come back to St.Jude and all that they have done for our family. I don't know where we would be without the doctors and staff there. They saved us when we had nowhere else to turn, and they kept our family whole while doing it. I have decided to give back to this wonderful hospital in a way that I know how, and so I am running the St.Jude Memphis half marathon in December. It will be the second anniversary of Phoebe's second and more successful transplant. A transplant that we hope will continue to save her and keep her cancer free.

I made a short video to honor Phoebe's journey to age three. She has endured more in her three years than most people will in a lifetime and yet she continues to smile and take on everything that is thrown at her. She inspires me.

Happy birthday bright and shining Phoebe Rose.

I have been having some technical difficulties on this site lately, so once again you have to copy and paste the links.

Below is the link to the video:

http://www.youtube.com/watch?v=4HcMx3aqMLM

And here is the link to team Phoebe Rose Rocks, running for St.Jude

http://fundraising.stjude.org/site/TR?px=2109846&fr_id=4820&pg=personal

Thank-you for continuing on Phoebe's journey with us ...

Music to my ears ... go Phoebe go

All is right in our little world today.

First thing this morning, Phoebe woke up and wanted to sit on the potty (this makes for big news around here), she did indeed sit and has been, in her words, in "big girl underwear" all day long. I am very proud of her. Despite my requests and efforts for her do this in the past, like everything else, she is doing it on her own time and in her own way. And that is okay.

This afternoon, we got results from Phoebe's MRI and lumbar puncture. Phoebe's spinal fluid is clear and the MRI is normal. Normal. That word is music to my ears. The MRI is a test that is particularly stressful for me. I feel like we can handle nasty cells in the bone marrow (although I hope we never have to), as that is what we have been handling and dealing with for so long, but nasty cells in the belly, I am not so sure. I am so thankful for this good news.

Our next test will be a bone marrow aspirate, at the beginning October and it will be done at St.Jude. We are looking forward to seeing familiar faces and being back at this wonderful hospital. Phoebe is particularly looking forward to visiting the zoo and riding the horse and carriage in downtown Memphis.

Today we have had big and small victories. And tomorrow I know we will have more.

Go Phoebe go ...

We are still working to light Parliament Hill gold this September, but I learned recently (after speaking to many different people in many different government departments) that to light the Peace Tower from top to bottom gold (like was done in blue for Prince George), it will cost $14,000.

I don't think that there should be such a huge cost associated with raising awareness, especially when the point of increasing awareness is to hopefully encourage an increase in funding for childhood cancer research. The Canadian Government, through the Canadian Institute for Health Research, dedicated only 3.13% in 2006-2012 to finding cures for the twelve unique cancers that affect children. Thousands of children are living with cancer in Canada today, and many, like Phoebe, are unable to find options to treat their disease at home. We need to do better. And so, we are thinking outside of the box, and trying to come up with ways that we can light the Hill gold ourselves. We have some ideas, so stay tuned.

In the meantime, if you have not yet signed or shared the petition to light Parliament Hill Gold, please do. And if you have signed and shared, please share again. http://www.change.org/en-CA/petitions/light-parliament-hill-gold-on-sept-21st-for-childhood-cancer-awareness

Phoebe and Mae go camping

We had our first camping trip and now I can say, without a doubt, that if you ever find yourself stranded in the woods, or on a deserted island, Jon is someone you will want to have on your team. The man is very handy and can put up a giant tarp perfectly as a storm approaches, in seconds. Seconds. We brought along a camp stove (or I should say, I brought this), and Jon refused to use it, cooking everything on the open fire. He made campfire coffee actually taste good. Although we were far from stranded, as our car was parked a short walk away, I was glad to have him as my camping partner.

I can also say that Mae is perhaps the world's greatest camper. She is enthusiastic, happy, helpful, and never complains. Through rain, uncomfortable pillow-less sleeps, mosquito bites the size of Oreo cookies, she still sang the praises of the great outdoors. Phoebe not so much.

Phoebe said about an hour into our trip, after the tent had been set up, beds had been made and dinner was on the fire. "Are we going home?" Then at bedtime she really wanted to go home. She wanted her bed and her books and her nighttime episode of Max and Ruby. I think if Phoebe were ever to be stranded in the woods, Max and Ruby would be who she would like to join her. Phoebe asked to go home quite often but eventually warmed up to the idea of camping, and when she wasn't asking about home she was trying to have fun. In hindsight, perhaps camping while on steroids is not much fun, or perhaps so much new is hard to take in all at once.

This weekend everything was new for Phoebe. She slept in a tent for the first time. Sat in front of her first campfire. Had a first taste of campfire cooking which she loved. She roasted her first marshmallow. Experienced bath time in the outdoors, or lack thereof. She had to quickly get used to walking over rocks and tree roots after losing her footing a few times. She eventually took it all in stride. She created a stage with Mae on an exposed rock and put on shows, complete with dancing and an enthusiastic audience. They played hide and seek, relaxed in a hammock, we took long walks and in between the clouds and rain, we found some time at the beach.

Phoebe and Mae tasted s'mores for the first time. Phoebe picked out the chocolate and threw away the rest.

All mood swings, steroids and requests to go home aside, we had a great weekend. We expected Phoebe to love camping as much as her sister but she doesn't and that is okay. Maybe she will love it when she has a chance to go without her steroids on board, or maybe she will always prefer home. We made the most of the camping trip that we were able to take right now and I am grateful that we were able to camp at all.

On to the next adventure!

Phoebe and her friends sent me ...

Thank-you to everyone who has signed and shared the petition to light Parliament Hill Gold. We are now close to 900 signatures. I wish we had more, and I can't understand why after all of my and others' constant tweeting and sharing we don't have more. (I am on twitter now, and not quite sure what I am doing, but if you wish to follow I am @jennydoull1). I hope that as the momentum grows so will the number of people signing and sharing and that we can make this happen. We are moving a mountain, and I am learning to be patient. I just want the world to know how hard these kids fight just to be kids. They really shouldn't have to fight so hard.

If you haven't signed the petition yet, please do and if you would like to help us make this happen, you can also write to your local MP - tell them Phoebe and her friends sent you and that they want and deserve a cure and some attention. Tell them that you too would like to see greater awareness for pediatric cancer and that you would like to see Parliament Hill lit up gold. Tell them that children shouldn't have to suffer as they do to be cured of this disease. Tell them that cancer is the leading cause of disease related death among Canadian children. Tell them that too many children are dying of cancer and that we need better and more targeted therapy.

I believe that together we can make this happen. Are you with me?

The link to the petition: http://www.change.org/en-CA/petitions/light-the-parliament-hill-gold-we-will-light-the-hill-gold-on-sept-21st-for-childhood-cancer

As for Phoebe, she is doing very well. She is having fun just being a kid and growing and learning everyday. She has been swimming, to the beach, we are going camping this weekend for the first time as a family of four, and I am really excited. I am also very aware of how blessed we are to have these moments.

We will be celebrating Phoebe's third birthday very soon which is simply amazing and quite miraculous. Two years ago, almost to the day, we were told to take our baby home and enjoy her. That there were likely no options to cure her of her disease and very little hope.

Today, thanks to options, hope, research, persistence, a bit of luck, a lot of support and prayers and some incredible doctors, she is here. We don't know what the future holds, but as long as Phoebe is here and fighting, we are blessed.

We believe.

A big thank-you to Daun Lynch and her friends - they have just completed their ride across Newfoundland to raise awareness for childhood cancer. I am so grateful for all that they have done. To read about their journey, please see www.ridingforphoeberose.blogspot.com. Mae, Phoebe and I have really enjoyed following their adventure through the blog!

Light Parliament Hill Gold and other things ...

This week has been difficult; waiting for results, the stress and anxiety that comes with that and yesterday we heard news that one of Phoebe's little friends passed away. Brave Molly Campbell. Our family was truly blessed to have met her and her family in Memphis and I will never forget them. They are a beautiful family and Molly was a courageous and amazing little girl who inspired so many. My heart is heavy. This road that we are on is one that no family should have to travel, and what the Campbell family has endured, no family or child should have to endure. It is all too much.

Since our journey began, many of the friends we have met and loved with the same diagnosis as Phoebe, are no longer here. Piper, Matthew, Wesson, Ella, Molly. Beautiful, energetic, brave, captivating children. It is hard not to worry. Hard not to wonder if our time will come. And we do worry about that. Every day. We worry every time Phoebe sleeps in late, eats too much to show a bloated belly, or too little, every bruise and bump, every change. The mother of one of these beautiful babies once said to me when I met her for the first time at St.Jude, she said; "I wonder and worry all the time ... when is my baby going to die". It is all too much and we need to do better.

For many of these babies, it was not Leukemia that ended their lives, but the treatment used to cure. You see, the treatment used for Infant ALL is not targeted to the genetic mutation that many of these babies have. It is, in my opinion, a shot in the dark. Drugs used to treat various other types of Leukemia are used in higher and more frequent doses for infant Leukemia. The treatment is so intense that many babies are seldom out of the hospital and they suffer severely. Many of these drugs were developed over 25 years ago and come with a list of possible complications so long it makes me shudder to think about it. Brain damage, infertility, secondary cancers, lung disease, heart disease, growth deficits, hearing loss ... and the list goes on and on and on. Reading the list when we began this journey, I wondered - why are we doing this? Why are we putting our baby through this? And then I learned very quickly that we had no other choice. Without these second hand, antiquated, adult drugs, our baby would die.

And so, with these treatment options, some babies are cured. Many are not. Some babies develop devastating and life altering long term side effects from this treatment meant to cure them. And for those with infant Leukemia that relapses, the treatment options are few and ineffective and often, all that is left are straws to grasp and talks of time. We have been grasping at straws for two years and frankly, I am sick of it. Sick of the lack of attention paid to the children who are fighting cancer. Frustrated by the band aid approach to treating pediatric cancer. Tired of the lack of change. How many years should pass before something changes? How many children need to suffer? I am tired of watching my baby and other children suffer. Of reading about families who are left to pick up the pieces and live their lives without precious children. Or families and children living with devastating long term side effects. I am so tired of worrying, but in many ways I am thankful for the worry because it means that Phoebe is still here.

I wonder sometimes, what it would take to open the eyes of those who have the power and influence to make change. To open the eyes of drug company executives and those in government to the reality of childhood cancer. How would they feel when offered a protocol for treatment of their child that had more chances to harm than to cure. A protocol like Phoebe's with a 10% chance of success and enough toxins and chemotherapy to kill an adult. A protocol using drugs that are 25 or more years old and used to treat other cancers? Or once they had exhausted all conventional treatment, how would they feel about having to pound the pavement, to raise money for research in the hopes that they could beat the clock. How would you feel? I feel overwhelmed, exhausted, weary, hopeful, worried, and most days I feel like screaming. Screaming that this is not good enough. My baby deserves better. The babies and children that we have met on this journey, deserve better.

How can you help? If you feel strongly like I do, that we need a cure, and that the facts surrounding pediatric cancer, the leading cause of death by disease for children in Canada, are shameful, you can share the stories of children who have been touched by cancer. You can raise awareness. If one more person becomes aware by reading this blog, then I have done well. You can donate to an organization that raises money specifically for childhood cancer research. In October, the world is showered in pink (in fact the world is often showered in pink). I support breast cancer research and the need for breast cancer awareness, but sometimes I wish that the world could also be showered in gold. Gold, in case you are not aware, is the colour of childhood cancer. September, is childhood cancer awareness month. I hope this September will be showered in gold. I hope that Gold becomes as recognizable and synonymous to childhood cancer as pink is to breast cancer. I hope. I hope. I hope.

You can help light the world gold by signing this petition. http://www.change.org/en-CA/petitions/light-the-parliament-hill-gold-we-will-light-the-hill-gold-on-sept-21st-for-childhood-cancer
It is to light Parliament Hill Gold on Sept. 21st to raise awareness for childhood cancer, to honour those children fighting, the survivors, and the children who are no longer with us. It has been circulating for over two months now and has just over 300 signatures. Just 300 signatures. This speaks volumes. Please take the time to sign.

Today, we are one of the lucky ones. Today, Phoebe is here and she is thriving. Truly and miraculously thriving. Today and every day, I am thankful. Today, Phoebe's bone marrow results have come back negative for Leukemia. The MLL gene that plagues us is undetectable by minimal residual disease. That's right, it is negative. Today we have given cancer another swift kick to the curb.

If you would like to send Molly's family a message of support or perhaps donate aeroplan miles or funds to help them return home, please visit www.mollycampbell.ca

A few things ...

Phoebe had her bone marrow test yesterday and the sample has arrived at St.Jude. We should know something next week or the week after.

We are anxious - actually this is an understatement, we are a lot anxious but holding on to hope and watching our girl shine.

Phoebe is finished her pulse of steroids for this month. Tonight at dinner, she ate more fish than the rest of our family combined, and she may have also eaten her weight in cheese today, but she has been incredibly moody and often inconsolable. I am hoping that she is on her way back. The days she is on steroids are particularly difficult because she acts similarly to how she did when she was sick. The bad kind of sick. Every month we are shocked back to those days that were filled with so much worry and fear. We are thankful when she is back to herself, but it can't come soon enough and the fear truly never disappears.

Tonight Phoebe took her weekly medication like a big girl, from a teaspoon. She is very proud and now takes all of her medications by herself, including her steroids which come in pill form. She just picks them up and pops them in her mouth. I am also proud, but wish she didn't have to learn these skills.

We will continue to hold on to hope as we wait for these results. They will be good. Please keep Phoebe in your thoughts and prayers.