September 1, 2015

Today was a hard day.

We are looking into getting a second opinion for Abigail, just to see what someone else says. The Dana-Farber Cancer Institute in Boston is apparently the best of the best for pediatric cancer. So I called today, they sent me a form and easy to follow checklist and I just do what it says and some amazing all star cancer doc will be able to weigh in. Tell me if they too believe treatment is futile. Amazing how they have this down to a form where I have 2 short lines to describe Abigail’s diagnosis. Cut and dry like any other mundane form at the doctors office. Except this one has a death sentence on it. I let the nurse in me fill out the form, clear and concise, like I wasn’t talking about my child, my baby, my kid’s fetal brain tumor. Sometimes it’s easy to detach and just summarize the facts. And sometimes it’s not.

They need the radiology reports from the MRI, which I have copies of because morbid me wants to know everything about the tumor, so I dug them out and re-read them. That’s when the detached nurse talking about someone else’s kid façade crumbled and I spent the next hour choking back tears and praying God takes this all away. Kneeling in front of my baby, asleep in the swing, just pleading that she won’t leave me. So hard to read those reports and accept. And I know what they say, I’ve only read them 100x, but it’s still so hard to see it printed there in black and white. With “Jones, Baby Girl” listed as the patient. My heart throbs and I cannot breathe reading it. According to the most recent MRI report, the tumor measures 10cm front to back, 7cm left to right, 7.5cm up and down. 10cm!! For the first time, I got out a tape measurer to see exactly how big that is and the answer is really stinking big. Especially next to Abigail’s head. The report is so terribly bleak I can’t hardly stand to read it. I look at her and I just can’t understand, can’t believe this report is about my Abigail. Something has got to be wrong here.

But some things are changing. Her head, while not crazy big or growing crazy fast, has an element of lumpiness, and I feel like things are different. There is a ridge where it used to be smooth, a fullness on the left side, just things that don’t feel right. Indicative of what’s going on inside. I dread the day when things start to manifest. I pray she never looks “sick”.

I’m afraid that this second opinion we are seeking may come up with a treatment plan. I know that medically her odds will still be poor because we’ve scoured the Internet for research and information. What little research is out there, because it is so rare, is depressing and not in any way promising. Fetal brain tumors are just bad, period. But, say they come back with a surgery and/or chemo option. And say they give Abigail a 10% chance of survival, a cancer free life. What would we do? Fly her up to Boston, put her through everything, and shoot to be part of the 10%? Or continue doing what we are doing, ie not treat the tumor, and always wonder if we made the right decision. If we could have been the 10%. I don’t even know. How on earth am I in a position to make these decisions?

On a side note, September is pediatric cancer awareness month. When I saw that on Facebook, I had a bit of a reality shock. I saw a post and “liked” it, because of course we should be aware and support families and children with cancer. And then, wa-bam, reality check. I HAVE a child with cancer! My child has cancer! Abigail is one of these kids! Crap! How did that happen? And how the heck do I change my profile picture to be gold in support of pediatric cancer so I look like a good mother supporting her baby with cancer? Why can I not figure this out? Like a gold Facebook picture is going to change Abby’s diagnosis but at least it’s doing something. I just need to do something.


4 thoughts on “Today

  1. I am Leila’s Mother in Law and just want to tell you we love you from here in Ormond Beach and are so inspired by your faith. My almost 19 yr. Old son physically left us after a fatal car accident a few years ago and I know he is with me in his perfect spirit. Sweet prayers.


    1. I don’t have a lot of guidance. Not dealt with cancer for my children. Other issue not cancer though. Easy for me to tell you to never give up. But that is what I am doing. From a different space, I tell you go with your gut feeling. Prayer does work. My heart pounds for your sadness and happiness. You and your family will be in my thoughts and prayers. Peace Hope Healing Joy and Love


  2. Thank you for this candid piece, as heart-wrenching as it is. I don’t know how you and S will decide what the right choice is…treatment is rough. But so far, the quality of life you have given your precious Abigail has been beautiful, priceless. I’m sure your continued prayers will be answered and you will know what to do. Whatever your choice is, do not regret doing the other. He is guiding you along the way. Thank you for touching so many lives with your love, testimony, and unwavering faith. God Bless you and sweet lil Abigail.


  3. You don’t know me but I have seen your story on Facebook, I just want to let you know I will be praying for your little girl from Gardner’s, PA!!!! God bless you and your whole family!


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