Fighting DIPG-Results are In

We got Ava's latest MRI results today.  

We knew we were going to be told that Ava's lesions on her spine have grown because of her inability to walk.  Unfortunately, they have grown and spread.  When they were first discovered they ranged from the T2-T8 vertebrae.  Now they go from T1-T8 and there is a cluster on her L2 all the way down to her coccyx.  These are clustered around a lot of her nerve endings and we think this may be causing some the pain she has been complaining about.

The gliobastoma on her dura has also grown back by about 10-15%.  Her brain stem glioma is stable (one piece of very good news).

Here is the very large mass in Ava's spine.


We have come to a point where we understand that none of this is curable but we said in the beginning that we will fight and we aren't giving up now.  Ava will have an aggressive course of radiation to her spine and part of her brain (she has received her lifetime dose to the pons area) along with two different types of chemo.  The hope is that it will improve her quality of life and function will return to her legs. There is no guarantee that she will be able to walk again but we are hopeful this will help.  

This is very hard for us.  Ava is such a beautiful child. She is always laughing and smiling.  I hate that her childhood is being taken away.  There is no back to school for her.  No excitement for the upcoming year filled with after school activities, new friends and learning to be independent.  She gets to go back to radiation instead.  She has to rely on us for everything.  If she wants to go somewhere in the house, someone has to carry her there.  We have to take her to the bathroom and even pull her pants up and down.  Seeing her go from being so active to not being able to do things on her own is just so sad. 

Please pray that radiation and chemo does help her gain function in her legs so she has more time to enjoy being a carefree child.  


Comments
15 Responses to “Fighting DIPG-Results are In”
  1. Julia A. says:

    Oh Cynthia, I am so sorry :( Reading this brought tears to my eyes. I will continue to keep Ava in my prayers and hopefully the radiation and chemo does help so she can walk again. Sending you many thoughts and prayers

  2. Jenny Wilkerson says:

    Prayers are never going to end on from the Wilkerson family! I hope and pray Ava finds mobility soon with her new treatment! (((HUGS))) to you all! I know I can never say this enough I am here for you guys whenever you need it! Ava is such a fighter and she won't let this bump in the road bring her sprits down.

  3. denna says:

    I am praying for a new treatment, for a cure. I'm very sorry for the lack of options we have available for kids suffering with this cancer. I will be praying for your Ava. Please, if you haven't already done so, look into www.gerson.com and Dr. Burcynski in Texas. Much love and respect along with a ton of positive hopeful thoughts and prayers sent your way xxxx

  4. pengma says:

    im so sorry, i hope this new treatment helps.she is a fighter and a beautiful child, inside and out.i wish i could do something for her. i love her so much

  5. Rose Horner says:

    I'm so sad to hear this. :( I pray the treatment helps Ava to run and play pain-free! I'm believing God that this will be the case. I pray for God's strength to carry you and your husband through each coming day, week and month. God bless you!

  6. I do not know you or you sweet little Ava...I will add you all to my prayers. It is so sad to think of what Ava has to go through. I pray for strength to get you all through this..
    Mary

  7. Monica holmes says:

    Not a day goes by that we don't pray for all of you and we will always pray for sweet Ava! Im so sorry that she has to go through this!

  8. Julie Kettle says:

    I wish I had some words of comfort. I remember Ava as this sweet, beautiful, joyful little girl. Her smile would always light up a room. I sit here with tears running down my face, and prayers in my heart. Much love to you & Ava, and to your whole family.

  9. micheflet says:

    Okay, so the primary tumor, gilioma (first one) has not grown but is stable, correct? The newer one on the top of her head (dura) has returned to only 10-15% of it's original size, and the tumors on the spine are growing but are not as life threatening - mostly causing pain and inability to walk? Am I understanding this correctly, that the major concern, the gilioma is holding steady which is probably unusual at this point, and the dura is not growing as rapidly as before?

  10. Emily says:

    I hesitated to click on this post, dreading bad news. I can't imagine how your family is feeling. Cynthia, your dear family and precious Ava will continue to be lifted up in prayer. I pray that you feel Gods strength when you are carrying Ava from one spot to another. Love from AZ

  11. Sending prayers. Is Ava up to visitors? Andrew would love to see her but if its too difficult I completely understand. He still asks every day how she is. When I told him she was having trouble walking he said "Mommy I could bring my crayons so we can color then!" He also keeps asking if she ever got the pink wig she wanted. We happened to see one on line and desperately wants to get it for her. Is that something she still wants? Wed love to help make her smile any way we can!

  12. Cynthia says:

    I pray to God that he will protect Ava and her whole family and that His strength will become your strength. This has bought tears to my eyes but there is always hope. Take care.

  13. As always, prayers and hope for Ava and the rest of the family. I hope she finds some sense of happiness in each day.
    ((hugs))

  14. As always, prayers and hope for Ava and the rest of the family. I hope she finds some sense of happiness in each day.
    ((hugs))

  15. Anonymous says:

    My friends have a girl diagnosed with DIPG shortly before Ava's diagnosis (End of Nov 2011). She is 14. So interesting how similar what I read about in your blog is similar to what they have just went through. She just returned home from weeks of being in Ped ICU. If you want to read about her she has a caring bridge site just visit Hayleywhite1. They have great faith and believe our mighty God can do great things, and we know that is true!!! It is wonderful that you all are helping Ava keep the fight and are going to try chemo and radiation. I will lift your family up in prayer for all that you are going through and for a miracle. Check out this website: www.doctorrenfro.com this is a wonderful miracle story of what prayer and our Lord can do, I know this man personally and all is true. Keep Fighting and Hoping!! From Virginia

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