Tuesday, May 24, 2011

May 24th Tuesday: MRI Results

Charlotte had her MRI this morning.
 The details of the procedure were not so good.
Unfortunately she woke up screaming mad, the combination of drugs that they used for anaesthetic did not leave her in a happy state. Plus they used tape over her eyes, (we learned during radiation that she is quite sensitive to the medical tape on her skin) but we have never seen them use tape for MRIs so we didn’t know to request NOT to use it. So her eyes were all puffed with red squares- the solid hour of screaming didn’t help either I’m sure.

 The real news of Charlottes MRI was not good either.
The area in question, the "thickening" that we saw four weeks ago has grown. It is low in the back area of her surgical cavity. Our oncologist says it is clearly cancerous. There is a second area showing now too, with a nickel sized tumour growing near the top of the surgical cavity.

 What now, we are wondering? Both areas of reoccurrence are within the original field of radiation. They have given her the highest dose of radiation possible to that area already; that means that radiation did not help. She has had the highest doses of chemo, the protocol best matched for her cancer. Chemo has left her system fragile and there is not much more they want to give her as it would have too high of risks. We have tried naturopathic medicine on the side (despite wincing from our conventional doctors when we mentioned it.) I don’t think that we have the time that is required for anything from the naturopathic field. We are continuously praying for a miracle that is all that seems left for us to do.

Our doctor is going to look into any trials and studies that we might be eligible for; it does not look like there were any really promising ones for Charlotte’s case. She is in contact with St Jude’s in Memphis and Sick Kids Hospital in Toronto to see if there is anything available. The main trial that she suggested we look at is only to test the toxicity level for children of a new chemo. This chemo has not been proven to do anything for PNET tumours in kids but has shown to slow tumour growth in the lab. – But there could always be an unexpected result. It looks like we will be given a choice of quality vs. quantity of life. We have to decide if we want to chance making her sick and tired to try it out. Even if it does affect the tumour, our doctor warned it would not be enough to cure her.

 Charlotte’s oncologist told us that she does not have anything else to try that she would realistically expect to cure Charlotte. She asked about what we have at home for palliative care options. When we asked what she expected for our time together, if we did not do any more treatments, she had no answer, not a hint. It sounded like one day Charlotte will just start showing symptoms again, or start having seizures. Weeks? Months? We dont know.

 I would like to tell you that although all this is going on Charlotte continues to feel well. She is happy and outwardly healthy. She was so happy to see Yolanda when we got home, the two of them scurried off to show each other the new pictures and stickers that they had done as soon as we got in the door. They were singing away upstairs until we had to break up the party for bedtime. We have not yet told Yolanda what we were told in Calgary. She is a smart girl and she sees everything that is going on but we are not going to tell her everything just yet.  

 Here we are once again turned upside down. Please hold us up in your prayers as we are not sure how to hold ourselves up anymore.


  1. Anonymous10:30 PM

    Sending love. So SO much love.

  2. Anonymous10:56 PM

    Love and prayers for you all. We are walking the path with you. Keep putting one foot in front of the other and pray for wisdom.
    Bless you,
    The Fahlman's of Regina

  3. So sorry to hear this Allison & Rob. I can't imagine how you must be feeling. We will continue to pray for you that God gives you strength to walk through wherever he might take this.

  4. Anonymous8:02 AM

    My heart hurts for you today. Dalton is very sad that he missed Charlotte, and so upset at your news. We love you guys and miss your smiles! We think of you everyday and hope that someday we will see all 4 of you again.

    Wendy and Dalton

  5. Our hearts are breaking for you with this news. We are praying for strength and guidance for you all during this time.

  6. Anonymous8:45 AM

    I was in tears last night after hearing about little Charlotte's disappointing results.
    I know that you don't even know me but we have been reading your blog and have been kept updated by Kim and Linda Leahy. You have been in our prayers for months now. We continue to pray for a miracle and are praying for strength and peace for your family right now in this very difficult time since you heard results from the last MRI.
    Wilma Duggan

  7. Anonymous9:36 AM

    I have never met you, but have heard of your blog through family and friends. I will keep you in my prayers and heart.

  8. Anonymous10:48 AM

    although we've never met, i want you to know that i am praying for you. i was so hoping that you would get positive news after charlotte's MRI ~ i am heartbroken for you. i have a 4 year old daughter and a 2 year old son ~ i can only imagine the sadness and helplessness that you are feeling right now. know that there are millions of prayers being sent up for charlotte. hang in there..... ~ Lisa

  9. Tara McKee10:56 AM

    I am so sad to hear this Allison. You and your family have been so strong and continue to be so. It breaks my heart to hear of this. We are thinking of Charlotte and wishing her the best outcome. We send our love your way. Lots of love and hugs for all of you.
    Tara, James and Paige

  10. Anonymous11:37 AM

    I'm just a stranger who stumbled upon your blog ages ago through a friend of a friend of a friend, but I have kept Charlotte and your family in my prayers since day one. She is such a beautiful little girl, and her sweetness shows through every photo you post. Regardless of the news I will continue pray for a miracle for your baby girl. Hugs to you and your family all the way from Boston, MA USA

  11. Continuing to Pray for all of you. . .

  12. Christy Lund1:26 PM

    Words can't express how sad we are that the results weren't what we were all praying for. Brynn is asking lots of questions that I don't have the answers for. I can't imagine how you are feeling but am praying for comfort and peace as you make the difficult decisions you have ahead. We love you guys and feel so blessed to have met you last year! Hugs from the Lund Family

  13. Anonymous2:03 PM

    Though you don't know me, and I've never met you, I came across your blog a few days ago. I feel as though I love your little Charlotte dearly even from the small bits and pieces that I've read here in the last few days. I have a 2 year old little girl, and it breaks my heart to think of what you are going through. I cried as I read through all that this beautiful little girl has been through, and today, I cried as I read the latest news.

    May God give you peace and wisdom, and bring the right people with the right knowledge into your life.

  14. Trisha Reimer3:14 PM

    I am so so sorry. We are in this with you and will not stop praying.

  15. Anonymous5:33 PM

    Dear Allison, Rob, (Yolanda and Charlotte too),

    Our hearts are heavy and we are truly sorry to hear the results of Charlotte's latest MRI, our thoughts and prayers have been, are and shall continue to be with each of you. Whenever you feel exhausted, hopeless, powerless, angry, confused, sad, or simply at your wit's end, may you please consider all the prayers being lifted up for Charlotte and each of you, like the arms of Moses' being held up by Aaron and Hur (Exodus 17:12-13).

    God bless you
    Pastor David, Christy
    & Nathanael Morton

  16. Anonymous7:04 PM

    My thoughts and prayers have been with you since the beginning of your journey, as I have continued to read your journal every step of the way. My heart goes out to you and your family. I will continue to pray for a miracle for your sweet baby girl.
    Deb Bartraw

  17. Anonymous7:28 PM

    I cannot put into words how Devan and I feel for your family. We think of you often and talk about Charlotte daily. We will be praying for all of you as you face your difficult times ahead.
    With love
    The Davidson Family

  18. Anonymous8:50 PM

    you mentioned you are willing to try natural remedies.... it's been proven that making the body more alkaline does wonders to fight illness, infection and disease. change her drinks to alkaline water, start giving her marine grade coral calcium, as well as vitamin D for absorption. you can google the benefits of coral calcium. we are all sending you love and hope.

  19. Anonymous9:56 PM

    Our hearts are aching for each of you who love this precious little girl..
    We have been praying for you for so long, and will continue to pray without ceasing...for a miracle...
    Your journey has taught so many so much...about faith, and courage and hope...
    Many many lips are lifting your Charlotte to Him...
    and, tonight, we are praying for a good night's sleep for each dear one..
    Thank you for your faithful postings on this blog..
    May our Lord give you his blessed PEACE...

  20. Kevin and Delaine10:04 PM

    Little Charlotte is God's and we ask why. There may be no answer as to why God has chosen to allow this but I know that by reading the comments your family has touched a lot of lives. May God give you the strength and wisdom you need. We will continue to uphold you in prayer.

  21. Anonymous6:07 PM

    i know i don't know you...just wanted to send some encouragement and love.let us not forget how precious every moment of life truly is.even the most painful and difficult. it really hurts us all when a family...especially a child,is going through this kind of torture... sometimes the only consolation is gratitude for every moment we do have..hugs to you and all your's.may your victories over this destruction be swift and sweet! <3 DEATH TO CANCER!!!

  22. Anonymous9:37 PM

    Just wanted to let you know that you are all in our thoughts and prayers. We know what cancer can steal from us, take the time to find the blessings there are, because God does give grace and peace, even when the valleys are so low.
    Dale & Heather

  23. Yvonne and Jocelyn12:02 PM

    Rob and Allison
    I am so sorry to hear about the news. I feel life is just not fair sometimes we pray we fight we try everything and it is like it just slaps us in the face. Your family has been through so much,watching your baby suffer through surgery after surgery and treatment after treatment. You wonder if you have done everything in vain. I am praying for charlotte she is a beautiful little brave soul that has endured so much in her precious little life. PLEASE if u need ANYTHING call me. I will send u my phone number on your facebook account we are only an hour away.
    Lots of love
    Yvonne Sevinski

  24. Anonymous11:05 AM

    Rob and Allison
    We are so sorry to hear this. Thinking of you and continuing to pray for your family during this difficult time.
    Mike and Arlene Lundstrom and family

  25. Leslie N1:17 PM

    I was so disheartened when I heard the news. For the past few months I’ve been wondering how Charlotte is doing and thinking of you all often. All families I look after are special, but every once and awhile a family will touch you in an extra special way. Charlotte is a little angel. Since I can’t see you I wanted to send my thoughts and hugs your way. Your strength amazes me. Know that I’m thinking of all of you.
    Nurse Leslie

  26. Anonymous8:46 AM

    Rob and Allison,

    Your family is always in my thoughts and prayers. I think of you all the time! My heart is heavy for you and can not imagine the ordeal that you have been through. I think of how courageous you both are and your such an inspiration to me, you definantly help me get through my families hard time. I will never forget you!

    Christine, Alex and William and David Barry

  27. Dearest Amsing Family,

    My heart breaks for you as I try to absorb the latest news of Charlotte's diagnosis. I am so sad. I will continue to keep you all in my prayers; praying for strength, courage, and understanding.


  28. Anonymous7:29 PM

    Rob and Aliison,
    Your latest news completely crushed my heart. I just wanted you to know that Charlotte is a very special girl who will never give up her fight. She has such a pure spirit that empowers me as a nurse. Charlotte will always be in my thoughts and I feel blessed to have met you all.
    Nurse Stacy