The Assist by Knight Foundation and Project Bloom initially established this fund to directly contribute to the Potvin Family during their time of need. They have since established the Ellie Shoal Potvin Supplemental Needs Trust. When you click the button above, you will be redirected to liftupellie.com.

Your prayers and your support are still greatly appreciated.

 

A Mother's Plea:

Dear My Cherished Family, Friends, and to all the Believers of Miracles and Prayers:

I will begin journaling on Ellie Potvins Caring Bridge website shortly, there you will be able to read daily journal entries and receive updates on Ellie. It may take me a few more days, but has been set up by some loving friends for me. Once I am ready, I will send you all out the site address. Here you can also send us messages to read.
Also, if you are on this e-mail list and choose not to receive anymore e-mails please let me know. Journaling I have found to be therapeutic for me. This is my way to cope and process life as the story unfolds each day. These entries are for people who want to walk with me this year through my toughest journey to date and together maybe we can find some purpose, learn from and maybe even find some good through this tragedy of a child. My angel, my daughter - Ellie Shoal Potvin will be given the miracle of healing through our Lord in heaven. I pray for protection, wisdom and strength for my family. I pray for no pain, joyful days, full heart of love, no fear and a stronger family bond. We have accepted the cancer and pray for complete healing over the next couple months for our Ellie.

I have asked for many prayers for my 6 year old daughter Ellie (a twin) who has stage 4 Rhabdomyosarcoma cancer in her trunk, leg and lungs. I have asked with heavy heart for your powerful prayers for God to heal Ellie. As a Mother, I thought the greatest risk I would face would be the 9 months of carrying my beautiful twins. For I was worried would they be healthy, strong, smart, loving, kind, happy? Would I be a good Mommy? So I prepared. I read books, I ate healthy, I talked to other Moms, I nested in my home and prayed daily for healthy newborns. God gave me the miracle of 2 perfectly healthy twin daughters, the greatest gifts I have ever received from God. They have changed my life... and I am a better person for knowing them.

But, Nothing could have prepared me or Tim for the news over a 4 hour period that my kind sweet daughter was dying of cancer. Nothing. Feeling helpless, out of control and desperate for Gods grace to be bestowed on my daughter, I asked for others to join me in the reverent power of prayer in my e-mail below. What I learned is this... when you cry, you do not need to cry alone. Gods Children take care of each other. Over the 10 days that I have not left the hospital or stepped outside, I have felt more connected to the world than I ever have in my life. The sense of community and belonging has been blessed upon my family. Myself, Tim, Ellie and Grace have now a family, a community of pray warriors, throughout the United States, Europe, Mexico, South America, Italy and all the way to Africa. I have loving people who have shared with us their powerful stories to send hope, continued faith in God, meaningful prayers, shared words of wisdom and strangers who have cried for me, some have printed Ellies picture and put it on their fridge as a reminder to pray daily, others have sent care packages for Ellie and her twin Grace. Most without ever knowing us. Ellie to date has received over 600 e-mails over a 2 day period at the CMC Levine Hospital - we have beat the record ;) Please know I will read every e-mail - it is a dose of strength each day.

Your prayers are carrying me, along with my love for Ellie. Today I sat down with a clinician who wanted to be sure I understood the road ahead of me. And that Doctors had not sugar coated Ellie's diagnosis with fancy words to make me feel better... I honestly think they were trying to prepare me by scaring me of the dark roads ahead.

"Ellie has a very bad metastatic cancer (spreading) and they are going to have to heavily poison your daughter for a year with a heavy amount of toxins (chemo) to try and kill the cells. Your little girl is very sick. In order to give her a fighting chance to live to beat the cancer she will suffer and so will you. Ellie will have various horrible side effects including the most dangerous which is the wiping out her white blood count ... this alone could kill her, as now she is at risk for serious and critical infections with no immune system. She will have platelet and red blood cell infusions and we can bet on at least 50 admissions to the hospital with a minimum of 3 - 10 days each time. You will basically live between here and the clinic. The nurses, doctor and clinic will become your new family. Cancer is a illness that rips apart families and 50% of couples end in divorce. It is just to much for couples to go through and endure. You need to be prepared to watch your child become so sick and watch them in pain and have no control. It has brought many parents into the mental state of straight jacket crazy overtime."

This blunt summary just threw me over the edge. Today my heart shredded, lungs shrieked silently, I was invisibly choked with pain and felt like I was just being punched again and again in the stomach with the reality of this terror. Yes, I have fallen many times this last week, my world has crashed around me with the realities that children do die everyday from cancer and my Ellie is truly at the mercy of our Heavenly Father. But please know you dragged me today, only tonight am I pulling myself together to be lifted in prayer again for Ellie and Grace and Tim. I pray to our Heavenly Father for his mercy and total healing of my daughter Ellies Cancer and to give us strength and wisdom along the way.

I have summarized below where we are to date:

On July 2nd we rush Ellie to the ER after discovering a large hard bump on her lower left pelvis. On Saturday, July 5th, our Ellie began her 6 days of chemo therapy (Irinotecan and Vincristine). Today is her last day. Then every Monday we will go to the clinic for her chemo and every 3 weeks have chemo treatment over 5 days. This plan will last for 6 weeks and then we will look at the results. Over the next year her therapy will change based on manymany factors. I have been given more information than I can digest and am on overload. I cannot express to you each day how I feel when I watch over a 2 hour period my daughter being given poison to kil this ugly and growing cancer. The cruel irony of it - Poison your child to heal her.

Thankfully we are slowly building on what is to come and Ellie has started with the most mild chemo drugs for side effects. She has severe nausea during and after her treatment, but is not throwing up. Her surgical incision on her tumor in the lower left pelvis area has been extremely painful and she has been on heavy doses of morphine. She is weak as to be expected and lost at least 5 pounds from refusing to eat... no appetite. When she finally does ask for something I run around to make it happen - and then no thanks Mom I do not want it anymore.

On Saturday, July 5th, Ellie loses her top front tooth and that night is visited by the tooth fairy and given $2.00 and 2 webkinz. Even with Cancer they get excited about the tooth fairy!

On Sunday, July 6th, as I lie in bed with our Ellie. I take a deep breath and say "Ellie we have learned the name for your Boo Boo... it is called Cancer." Ellie looks straight into my eyes and asks "Mommy am I going to die?" The power of those words from your child's mouth is enough to strike you down. But it was the power of your prayers, I am positive, that kept me calm on the outside. Though my brain screamed "I don't know" I stroked her cheek and said "No Baby, you are not going to die. Mommy is not going to leave your side till to you feel better. That is why you are in the hospital, because all these Doctors and Nurses can take care of you. Mommy and Daddy cannot make this Boo Boo better. I am sorry. Ellie you need to be strong, I am not going to tell you this is not going to be easy... Ellie replies "We are In it to win it!" Then I tell Ellie that somedays you are going to be sick and tired and just not feel good, but me and Daddy will be beside you. Other days you will feel strong and want to play. The goal is that we get you better so you can play all the time and not feel sick. Ellie asks "Mommy how long will I be a sick, a week." "No" I respond. "How long Mommy?" Probably a year. She stops and there is a long silence. " OK Mommy, time goes fast anyway." I think ONLY a child's response. Next, I say Ellie... there is some side effects of the medicine you are taking, like not feeling well and a tummy ache. And your hair might fall out. SILENCE, FEAR and WIDE Eyes. "What? I am never going to school again." Here I felt like crying because she will not have a choice most days. I tell her It will be her decision. Then I reassure her that it is the strong medicine that is making her hair fall out, not the cancer. When the medicine stops her hair will grow back. Ellie asks "fast" my response is "very fast." In the meantime, we will buy you a beautiful blonde wig or pretty bandanas... she thinks "Ok Mommy I want a wig because I can use it for dress up after." ONLY a child's response. Then I leave the room and cry... for my innocent child who is going to have to fight the odds to live.

On Monday or Tuesday, my days are now starting to run together, time has no meaning nor does day or night. Ellie is visited by her 2 first grade teachers this coming year...Grace, her twin, will also be put in this class to ease Ellies fears and introduce her to friends on the days she is able to go to school. While playing cards Grace says to her new teacher "You know my sister has cancer." Her response "I know." Ellie chirps in "Yeah, but it is not the dying kind." Just amazing - ONLY a child's response. Ellie has now made that same comment to many people and each time I hear it - my heart does a flip.

On Tuesday, the children's life therapy counselor takes Grace to help her understand what is going on. They go through a book that basically says this is me, this is my family, this is my sister, My sister has cancer.. and then goes over the basics of what she will see - her sister sick, tired, hair loss ect. On each page, Grace draws a picture to go with the words. Later she will read it to people and then at the end they autograph the homemade book. The first time I spoke to Grace about how she felt on having her sister losing her hair she said "I don't want an ugly bald sister." ONLY a child's response. We worked through those feelings and now Grace is looking forward to buying her hats and telling Ellie she is so lucky not to have tangles or have to move her hair out of her face while sleeping. I received e-mails from families who have gone through this, we have been encouraged to allow Grace to have an active helping role in this journey and not try to shelter her from the storm. In the end it would be impossible to shelter her - they are each others half and at young ages they will have to learn one of life's hardest lesson...that people you love get sick, really sick and there is sadness in the world. As a Mom I try to make everyday as joyful as possible, take away the hurt.. but I can't. Not this time. It hurts and so we must learn to give it to God and pray for healing.

Late tuesday, I sit down with educators to learn about blood counts, the infusions for platelets, red blood cells and the importance of the white blood cell count during her therapy. My head spins on how to care for Ellie, what to expect, clinic visits and so much more. I remember 1/3 of what they say and they told me to expect that...it takes awhile but soon I will be a specialist at Cancer. Who would ever know? The chemo targets all rapidly dividing cells (good or bad) therefore it hits her hair, mouth, throat, stomach and cancer cells. The problem is that all cancer cells may not respond to treatment and be destroyed...and even if the tumor shrinks over the next 5 years it may come back. That is why we need to live day by day for Ellie, keep her close in our prayers and enjoy her spirit and fill her heart with joy everyday. Because tomorrow has no promises...but we have her today.

Throughout this week, Ellie has had an up and down fever (if it is over 101 we have to be admitted into the hospital for at least 48 hours.) The doctor was concerned that the surgical incision on the tumor was infected and started a very powerful antibiotic called Vancomycin. With that medication a side effect is called Red Mans Syndrome where you get red, hot and a itchy scalp. To reduce this side effect they gave her Benadryl... which gave her a terrible side effect on Tuesday night. Ellie at 10pm started moving around, she could not get comfortable, then her legs were kicking and she was squirming like red ants were on her little body. The good news, it made her get out of bed for the first time in a week to walk with the help of me and a walker. We walked the floor till 2am when the medication finally wore off and she could relax. The next morning, I freaked when looking at the tumor on her pelvis for it was bigger and red. Our Doctor told us that was typical since she was now walking around. I also learned that before a cancer cell dies and they swell and the tumor will look bigger.

On Wednesday, we discover a lump on the back of Ellies head... I almost passed out. But it was only a swollen lymph node. Later, that morning we are visited by Snow White who does fun magic tricks out of her sparkly red purse. Luckily, 3 of Ellies friends had come to visit with her and able to join in the fun. I can tell you that CMC Levine has an excellent children's cancer center and focused on all members of the family. Our Doctor, Dr. McMann, has an excellent bedside manner and has been here around 25 years. But we will still seek out other Doctors for second and third opinions who specialize in healing this ugly cancer cell in children.

Ellies twin, Grace, has for the last 10 days been cared for by loving family and friends - but this illness has already impacted her greatly. She is lost without her sister and saddened. Plus, she is not the center of focus. Last night we talked, she told me she wants Mommy and Daddy Love, she feels no one is giving her attention and she is sad. I was so proud of her for telling me how she felt and encouraged her to tell me her feelings, good, bad or ugly - It is ok to feel all these emotions. Then I scooped her up and we went to the 3rd floor of the hospital and raced each other up and down this empty hallway...most calories I have burned in a week! This is a learning curve for all of us - and learning to give everyone what they need will be a challenge... but I will do my best.

Today, Thursday, we visited the pediatric oncology clinic to see where much of our days will be spent the next year, more nursing education, and the reality of infusions and sterile medical rooms will fill our lives. And later had the blunt medical summary of Ellies future and how our life has forever changed... what was is no more.

Friday - We hoping to bust out of here assuming here fever is gone! Ellie is thrilled to go home :)

Thank you again for your prayers, for your kindness and compassion and love for our Ellie. I ask for your continued prayers and thank you for sending the below e-mail to others around the world. You have helped me created a very strong base of firm believers of God and people who will start to pray for Ellie - these prayers will give us the miracle to heal my precious daughter. Thank you all for lifting my family in so many ways and reaching out. I send my prayers and blessings to you and your family. Enjoy the day, enjoy the people you love and be thankful... life is good. If it is not then change your perspective. Reality is how you perceive your world. Only you can decide how you view your life. Ad-mist all the pain, I am able to still feel joy that we are all together and I can hug my daughters. It is not about tomorrow. Just today.

Thank you again for your prayers.

Amy McGee Potvin