Before I say anything else, I want to say thank you. For the love, the support, and the donations. Equally, all of those things have made it possible for Andrew and I to be by Lilee-Jean’s side from day one, and for the rest of her treatment.
Love.
Love is what we have been showered with.
Love is what is beating this cancer.
And Love is the only word we have to describe our appreciation to all of you.
I’m new at this whole blog thing, so bare with me! I am writing from my own point of view and experiences, I’m writing because I feel like you have all become a part of Lj’s journey, and I am able now to share a little more with you. So… Here goes!
October 13th,
-Emergency ultrasound after a clinic doctor the night before noticed LJ’s large cranial circumference.
Our world was turned upside down when the ultrasound showed a mass and cyst.
- lilee’s first craniotomy (biopsy).
October 21st,
-results from the MRI and biopsy confirmed that the tumor was an aggressive brain cancer called Glioblastoma Multiforme.
-We were given two options. Make her comfortable, which would have been heavy sedation, or fight for her life. We chose to fight.
October 22nd,
- LJ heads into her second surgery, to remove as much of the tumor as possible, and her central line was inserted (CVC, a permanent IV port in her chest for chemo therapy, blood tests, transfusions etc.)
The surgery was risky, and she would most likely come out with some sort of physical or mental disabilities.
6 hours go by… Lilee got unstable so they closed her up.
LJ made it out of surgery with no expected disabilities. Our first of many miracles.
-surgeon knew they didn’t take out enough tumor to wait for her
Incision to heal before starting chemo. She didn’t have enough time.
October 28th
-Round 1, day 0 of chemotherapy.
October 31st,
-post op MRI showed around 45% of tumor was taken out. We had a 10% chance of survival.
-lilee-Jean’s first Halloween.
November 21st
-Lilee-Jean recovered quickly and was able to start round 2 early.
-round 2, day 0
December 5th
-Lilee-Jean’s first birthday.
-Canucks came to visit. Sang LJ happy birthday.
-lj’s first birthday party in the playroom with her closest family and friends.
December 9th
- MRI. Results showed the tumor was half the size since the post op MRI, and parts of it had died. The second miracle we witnessed, considering they only hoped for a stoppage in growth.
December 25th
-Christmas at home because lj’s counts were too low to start round 3. Bitter sweet
December 29th
-round 3, day 0
January 19-20th
- lilees stem cell harvest.
January 23rd
-round 4, day 0
January 29th
-lilee keeps throwing up her medication so they put in an “NG” tube.
January 30th
-lilee decided she didn’t want the NG tube any more and puked it out.
February 4th
-world cancer day takes on a whole new meaning
February 17th
-MRI. Results showed the tumor size had shrunk by at least half again. Unfortunelty this good news came with bad. It was still intwined with the brain, and surgery would be risky if not close to impossible without causing major brain damage. We left not knowing what our next step was…
February 29th
-The doctors decided that chemo was working so well, and surgery just wasn’t an option that 2 more rounds of chemo was our next step. Because with this cancer they don’t tend to do more then 4 rounds, the risks are higher and we are told we need to take it day by day and be ready for some hard times
-round 5, day 0
April 10
- with a delay due to Low counts, finally, round 6, day 0
What’s next? MRI in 3 weeks. That will determine everything. If the tumor has pulled away from the brain we can do surgery followed by megatherapy, if it hasn’t…
Treatment is getting harder on me as it gets harder on my girl. As we draw close to the 6th month anniversary of the beginning of this hell, I find myself dragging even more then I was (which I didn’t know was possible). Of course the rounds are harder on lilee, which in turn is harder on mom and dad, but with so many other outside stressors it’s like there is lead in my shoes. It’s hard to believe life goes on outside of the world we have been tossed into, because our lives do not. I am living this treatment along side our baby girl. My life didn’t “go on,” it didn’t just continue. It’s at a stand still until I can take my baby home along with the words “remission” and soon to follow “Cured.”
Being home is hard, in that respect, watching people live lives so normal, so… Healthy, then getting stares at lilees scar. At first I got defensive, but then something inside of me shifted. In a moment i can’t explain, and I burst open with pride. I want people to see her scar and know that she has gone through a hell most people will never know. And then see her smile. And laugh. And love. I don’t think pride comes any greater then this.
Then I grocery shop alone, and it takes every ounce of strength I have to stop the steady flow of tears that are building up in my eyes, from pouring onto the floor of isle 6. Why? I couldn’t tell yah. Maybe it’s because I see little happy families with healthy little kids, and I’m stricken with envy.
Maybe it’s because I know half the things I buy will go bad because we won’t be home long enough to enjoy them. Or maybe it’s just the act it’s self. Normal. Simple. And yet to me, In a life so precarious, it is so challenging and frustrating.
I find every day has its challenges. Some big, monstrous, even, and some small. But every day has its victories, too. And it’s those victories, big or small that keep us moving forward, even when the light at the end of the tunnel doesn’t seem any closer, even when it doesn’t seem lit.
We will celebrate each day. We will do what we can to make it easier on LJ, and on each other, so that we have the strength, body and soul, to fight.
I am blogging because I feel it’s important to share our struggles as human beings, so that we know we aren’t alone. So you know that I’m here too, I’m struggling too. But together, we can make it through. With Compassion, empathy and love, we can help each other make it through. Plus I love the sound of my proverbial voice 
Thank you again, for being a part of our journey. It means more then you will ever know to Andrew and I, and I know it’s making the difference in Lilee-Jean’s amazing progress.
One day at a time…
-Xo Chelsey
Chelsey thank you so much for sharing. I’m sitting here crying for you – both sad tears and tears of pride. You are an amazing woman and a wonderful mother. I think of you and Lilee-Jean often and hope for her speedy recovery. I’m happy to hear that you are receiving so much support and love, you deserve EVERY bit of it. Stay strong and lean on those around you when you need it <3 Love to you, your family, and of course LJ.
Bawling! Chelsey you are an amazing woman and mother. Thank you for sharing. There are so many people following you in this journey. No one knows just how you and Andrew feel but you both deserve all the love and support that has come your way. Lilee Jean has had more hard times than most people have in a lifetime but she also has you and that makes her one very lucky baby girl. xoxo. Love Chels.
You are an amazing mother and a strong woman for all that you have to go thru and have gone thru I don’t know what you are dealing with or how it feels but everytime I see pictures of u and ur little girl it brings tears to my eyes as I have 2 little girls of my own and I could image haven to deal with this myself and I wish and pray for ur liutttle girl every night and day no child should have to deal with this they have done nothing wrong to go thru somthing do evil. God bless you and andrew maybe he give u the stregth u both need and to gide u in the right road and god bless LJ and may he be by herside till she is all healthy again and thank you so muich for sharing your story . Stay positive you have so many ppl behind you if u don’t think you can go on we are all here to help give u a little push along the way. Take care and hugs to u and ur little girl xoxoxo
Hi Chelsea
I just wanted to thank you for writing this blog, I cried when I read it…..I have a little 8 month old baby girl, so my heart is with you. All of your strength and courage means a lot to us all, and gives life meaning. LJ is lucky to have you. Sending you love and light.
Callie and baby Shyloh
Thinking of you Mama. Keep writing
Hi Chelsey,
I am Tracey Niessen’s sister and Tracey has been faithfully posting updates about Lilee over the past 6 months. We have been praying for her and your family and will continue to. You have such an amazing daugther and she has absolutley incredible parents. Thanks for sharing this blog, it made me cry. I appreciate your honestly and sharing with us a glimpse of what you are going through. Love and prayers, Debbie
beautifully written Chelsey – made me cry both happy and sad tears and know exactly what you mean about the tears just flowing unexpectedly at such odd moments….happened to me today when I was thinking of Lilee-Jean all of a sudden thrown into the chemo treatment cycle again…and thinking of the contrast of her enjoying the wonderful weekend of sunshine with all her family…and what might be going through her mind….love and God Bless, Nana Putt
Dear Nana Putt…Chelsey has beautifully told the story of Lilee here as you did at Mother’s funeral yesterday. Laurence and I can’t imagine the heartbreaking ache you feel as a mother to Chelsey and Andrew and grandmother to dear little Lilee. We are stopping by to help pay a bill or fill the gas tank although these are the least of their worries. Maybe we and other grandparents reading this can help out, even just a wee bit, with the day to day burdens Chelsey and Andrew shoulder so that they can stay strong for their young family. And Chelsey… thank you for your courage and strength to speak out loud about the heartbreaks and the miracles you live through. Our thoughts and prayers go to your family and especially your little angel.
Thank you Chelsea……you have really spoken from the heart. I keep LJ and her family in my prayers every day.
Chelsea, I know I have never met you. I went to school with andrew for most of my school years. I have been following Lj`s journey since the begining and have lost many tears over it. I didnt know I could feel so much love for a little girl I have never met. I check on your page almost daily and i pray daily.
I remember where I was when I read the news about Lj, I was on the ferry on my way to visit my grandpa. I hadnt been to Powell river since my grandma had died of cancer and I was already having a hard time being on my way there. Then I read andrews status and my world shifted. I couldnt belive someone I knews daughter was going through this. I remember andrew being this happy, carefree guy and i could not belive that this was happening to him. I, of course starting bawling my eyes out right there on the ferry and google it so I knew everything I could about the type of cancer it was. I just kept crying. Thinking how none of problems seemed to matter anymore.
I have an almsot two year old daughter and am pregnant with our second after lossing a baby this summer. I can not imagtion what you are going through, I have tryed and I jsut start crying, I am someone you dont know, who barely knows Andrew anymore and I am moved to tears everytime i think of your family, everytime.
You are an amazing women, My hero. I am so moved by you. I honestly have no idea how you are doing this. You are the stongest women, I have never met!! Your daugher is so beutiful and is so unbeliveably lucky to have a mother like you. Who is honest about how hard this is and still finds the light in each day.
Thank you for sharing this. Thank you for sharing your journey with me, everyone, the world. Your story has touched people you dont know (and I dont just mean me, friends of friends of mine know your story)
I wish I had some words that would sound just right, or something that would make you smile, But I don;t anything I can say that would do that. So I will tell you this, if someone where to ask me today who my hero was I would tell them it is a women I have never met, who is a mother to a beautiful little girl, I have never met.
Sandra (Sammi) Manturzyk (Paschold)
Hi Chelsey,
Im not sure if you ever remember me, I used to go to school with you but believe I was a grade younger than you. I myself have a 17 month old little girl, and reading your story is very inspirational. I think that the times I have are “hard” and your story puts everything in perspective for me. Your strength is amazing, and you are an angel to your little girl. Her smile is beautiful and seems so full of life from your pictures. Although i do not know you or your family, my thoughts and prayers are with you. I am sending good vibes your way for this fight to be over soon so you can continue to enjoy the days with your daughter and bring her home soon. You are doing a great job, and thank you for sharing your story.
Hi Chelsey That was a heartfelt piece of writing and brings home to us all what you are going through. You are such a good mum and are being so strong for your little angel. I am sure you will be an inspiration to all those who are going through similar situations and will help them to cope with the hardships that they face. With love xxxx
My heart aches for you and your family Chelsey. I went through cancer with my adult daughter and I know how difficult that was. I can’t even imagine how hard this is for you. My daughter is doing great – she’s a survivor and LJ will be too. You are in my thoughts and prayers, and I will continue to cover Lilee-Jean’s story. LJ is going to kick cancer’s ass!