But what if she lives?

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We have been told since I was 30 wks pregnant that our baby was going to die. We’ve been through all the emotions. I’ve envisioned her death a thousand times, watched her die a thousand ways. Lost night after night of sleep afraid to lay her down, to close my eyes, paranoid she’s going to take her last breath without me. I’ve planned her funeral, what we would do with her ashes, what songs we would sing, what pictures I would display to show how perfect she was and how much she was loved. I’ve practiced how to tell the world we lost her, without losing it myself. I refused baby gifts, dreading I’d have to return them without a baby to use them. I’ve left tags on clothes, gifts still in their bags, older baby toys handed down from big sister Audrey still packed up. Abigail has no nursery, no cute, themed room especially designed for her. In fact, I have no idea where she’ll sleep when she has outgrown the bassinet. We haven’t planned that far ahead. In an effort to guard my heart, I’ve made every attempt to prepare for Abigail’s impending death.

But what if she lives?

An idea I haven’t even let cross into my head until recently. I didn’t plan, didn’t dream, didn’t hope past tomorrow. Then a couple weeks ago, as Abigail is thriving and growing, a thought popped into my head – but what if she lives? And after this week, and all the new information, new hope, after her seemingly somewhat improved MRI. What if she lives? We are prepared for her death but are we prepared for her life?

I don’t know. They told me there was no need to do newborn appointments or vaccinations. So I didn’t. I don’t know where she is on the growth chart or if she’s meeting her developmental milestones. I haven’t done anything related to Down syndrome, haven’t checked her heart, thyroid, labs, or even DNA for a 100% diagnosis. I haven’t  looked into physical therapy options, toys that help children with decreased muscle tone, or given her much tummy time. All these normal newborn things weren’t even on my radar. Now I’m wondering if I’ve done her a disservice but treating her like she was going to deteriorate quickly. What if she lives? Will we run into issues bc I didn’t start therapy early enough? Or will she get sick bc she missed a vaccine? Or does she have a heart, thyroid or some other issue we don’t know about bc we didn’t check?

I don’t know. But I have to believe we’ve made the right decisions up until now. I also have to change my thinking and give life a legitimate spot in the “what if” scenario list. Taking it out takes out a huge portion of the equation – God. Life is always an option, healing is always an option. Nothing is 100%. How I have to continuously remind myself of that! We’ve been told Abigail was going to die for months. But God said otherwise. She’s clearly not dead. Or close to dead. She’s actually thriving. Nurses at Wolfson’s for the MRI actually triple checked her identification bc her appearance did not match what they anticipated after looking at her chart and previous images that morning. Her medical records say this should be a very sick baby. But God said otherwise. It is the only explanation. You all believed it, spoke it, prayed it over our Abigail, when I couldn’t do it myself. I fully believe that’s why we are sitting here baffled at her. We been told all these things, I think these things… But… God.

It’s terrifying to put life back on the table. It scares me to hope. But someone said to me, “you won’t regret hope”. So I’m allowing myself to hope, and pretty recklessly right now. Suddenly, I think my baby is going to live. Truly I do. Even though they still say it’s a very long shot. But I’ll take it. Even though I get very overwhelmed thinking about what her life will look like if she lives. Her brain has had so much trauma. She may have significant special needs. Stephen and I have talked about what her “quality of life” might look like and would it be worth it to put her through all of it to be severely disabled. But who are we to say what “quality of life” someone has? God gives us life, it’s all high quality! So we’ll take it one day at a time. She hasn’t given up and we will not give up on her.

Prayer Works

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First image is Abigail’s MRI at birth, 8/6/15. Second image is yesterday’s MRI, 9/16/15. Marked difference!! See more brain less tumor? The power of prayer!

Abigail’s MRI was yesterday and we’ve been anxiously awaiting the results. What we see in her does not match what her last MRI showed. And we’ve had a hunch that her head is actually getting smaller, her sutures are closing, and her soft spot is coming together. So we’ve been wondering what the heck is going on in there.

The answer is…we have no idea. We met with our neurosurgeon here who is completely baffled. Comparing the two MRIs, from birth and yesterday, the images are definitely different. Basically, she cautiously told us things look better. It is still incredibly big, but slightly less enormous. The bleeding is less, the cystic areas are slightly smaller, the pressure in the brain has gone down. She even went as far as to question whether this is even a tumor in the first place. Whattt???!!!

Next, we talked to the pediatric neurosurgeon in Boston. He is the chief of pediatric neurosurgery at Boston’s Children’s Hospital, a professor at Harvard Medical, and one of the best, if not the best, in the nation. He took Abigail’s scans to the rest of his team, the chief of neuro radiology, and the chief of neuro oncology for review this morning in their conference. They also believe the scans are markedly different, things have changed. They all believe that this is definitely a tumor, but may NOT be an aggressive, malignant tumor as originally thought. He thinks it is possible that this could be a low grade tumor that looks like something worse. He believes the next steps are biopsy, determine whether it is the aggressive malignant tumor originally thought, if not then resect as much as they possibly can. If it is a nasty cancer, he probably would not risk the resection.

Oh. My. God. Literally. Oh my God!!!! What is happening?!! This has to be all you! We have done nothing! You and Abigail have your own thing going on. Confusing all our doctors. Baffling the experts. I love it. Keep doing it! “I have no idea what’s going on” is much better than “You need to be prepared that your daughter is going to die”. We are shocked. And joyful. And terrified. All while praising God!! A huge spark of hope has been lit and we are now on the offense, ready to fight this thing.

We realize that she still has a one in a million chance of survival. And if this doesn’t end in her graduating high school, we still praise God. We still know He’s here. Even if we lose her. Even if that tumor is the aggressive, cancerous monster they thought it was originally. Even if we lose her in the worst way possible. God is still God and He is still so good. He has given us a beam of hope. He has given us a clear indication to do something in terms of treatment. Wow, has He ever. I just feel like He yelled at me (in a nice way) through that MRI image, “oh you of little faith! Why did you doubt me!?”

We are going to need constant reminding over the next weeks, months, and years. We are planning to go to Boston as early as next week to have a craniotomy done to biopsy and possibly resect the tumor. This is not an easy surgery, and especially hard for a tiny baby. We can’t even fathom putting Abigail through this. But we have to, it’s her only shot. And we feel God is entrusting these doctors with her care. So here we go. Please pray for Abigail and our family, especially big sister Audrey. This journey we are about to embark on is going to be incredibly difficult. Our daughter has to have major brain surgery, in a city that’s far away from home. Our family will be separated for awhile. We are scared. But we are hopeful. We have put on the armor of Christ and we are ready to fight. And shine the love of Christ to everyone we meet along the way. Miss Abigail is going to keep making waves. Her story is going to keep touching hearts and pointing people to Jesus.

Suck it “inoperable” tumor!

Go Gold!

September is childhood cancer awareness month. And I guess it’s fitting that Abigail’s infant photo session has “gone viral” and her beautiful face has graced many online articles. And Facebook pages. And apparently even Pinterest. Which I find incredibly powerful and totally directed by God. We did not seek any of this out. All we did was try to freeze time at the talented hands of our new friend Mary. Who graciously donates her time and talents to families with children who have Down syndrome through the Buddy Baskets program. And she put our photos and story up on her photography blog, shared it on Facebook, and a friend of a friend is a writer for abc.com. And has a 2 yr old with Down syndrome so it caught her eye. So that’s how it started. It is His guiding hands that has placed Abby’s face all over the Internet. This attention actually makes me very uncomfortable and I would have not chosen to plaster our family on the World Wide Web if it were up to me. But it’s not. It’s up to God and He is moving. I pray she is touching hearts and souls all over the world. I pray they see the love of our family, the love we have for Abigail, and see a reflection of God’s love for us. Just a tiny glimpse of how much God loves us. Flaws and all.

But Abby’s is just one face. One face of many children out there battling cancer. One face of many children fighting God-knows-what disease trying to stay alive. One face of a child with Down syndrome. Abby is real. We are a real, normal family that never in a million years expected to be all over the Internet because we have a newborn daughter with brain cancer. I hate that we are all over the Internet because we have a newborn daughter with brain cancer. But God is using this for something incredibly amazing and I’m trying to roll with it. I don’t know what it is, but we would love to hear any stories that relate to Abigail. So maybe that if this ends the way our doctors expect it to, I’ll know how much her life mattered and how she made a difference to not only us, but family, friends and complete strangers.

We’ve also been approached many times about financial support. While we are grateful for the thought, as of now, we are stable and not in financial need. However, there is a serious need for funding for research specific to pediatric cancer. As I have recently scoured Google for information on infant/fetal brain tumors and cancers, I know how little research is out there that’s even mildly relevant to what’s going on with Abby. A handful of case studies. In light of going gold this month for childhood cancer, if you feel like you want to help financially, consider donating to a charity that helps children with cancer. Whether it be a non profit funding research, or providing games for kids in the hospital, or providing a free place to stay, or granting that last wish for a terminal child. They are all so important to the children and families involved. So if your heart is led to give, do it. Don’t think too much about it. Just give. There’s a reason why you feel the pull to help, someone out there needs you. Are you listening?

These are just a few charities involved with children and families fighting cancer. And a special charity for local families with children with Down syndrome. Some of these have already made a huge impact on Abigail’s life and supporting our family. We are forever grateful.

Pediatric Cancer Foundation: http://fastercure.org
Community PedsCare: https://communityhospice.com/our-services/childrens-services.aspx
Buddy Baskets: http://www.tesorifamilyfoundation.org/buddy-baskets.html
Dreams Come True: http://www.dreamscometrue.org
Childrens Miracle Network: http://give.childrensmiraclenetworkhospitals.org
Ronald McDonald House: http://www.rmhc.org

5 Week Anniversary!

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Abby update – She continues to thrive and defy our expectations. Last week, we sent her scans and records off to Dana Farber in Boston, the best of the best for pediatric cancer, for a second opinion and are anxiously waiting for them to review our case. Unfortunately it may not be until next week or the week after until they get to us bc there are other cases in front of us. Terrible that there are so many other families in our shoes with kids battling cancer that we have to wait in line. In the meantime, we are setting up another MRI and an appt with the oncologist here. We’ll see what this thing is doing.

Thank you for the prayers and support they are making a difference!

The Will of God

This is something that a lot of people have talked with us about lately. First off, God did not give this tumor to Abigail. We live in a fallen sinful world because of the original sin of Adam. Let’s make that clear. God did not give this tumor to Abigail. (If you want to discuss that further please message me)

“It is God’s will for Abigail to be healed. His will on earth as it is in Heaven…”

That could or couldn’t be true. Many people associate God with healing, especially of a defenseless child. They put their belief in the outcome rather than the Creator. When we correlate the sovereignty of God with the outcomes we want, God is now our vending machine. We want Him to do this and that in our lives. Weather that is to fix your marriage, get a promotion or heal a brain tumor in a child. In God’s eyes all of those things are the same. We make them different. He is able to fix every one of those situation in a breath, a whisper or a moment. He is able to do all of them without issue. When we pray just for healing we are limiting who we believe God to be and once again you are tying your belief in God to the selfish outcomes that you want. God doesn’t work that way and if you want God to work that way, go find another God. Contrary to the modern American Christian belief God will not always make your life easy or happy. He will not bless your because you’re a good and happy person that goes to church every week and has perfect hair, smile and family. If that is what you believe, I don’t know what God you are following but it’s not the God of the Bible. God’s will for you is not to have a 4/2 in suburbia with three kids a dog, suv and a smooth easy life. Once again, not the God of the Bible or Christianity.

God’s will is for all humanity to be connected to Him. When you truly confess that He is your Lord and Savior, you are His. You have given up your right to have whatever life you wanted. Many people don’t realize this when they first come into relationship with Christ within modern American Christianity. God purchased you with His son. Let that sink in…your soul was owned the devil. God purchased you with the life of His son. Plain and simple. When you truly open your heart to Him, you are now His property. Now some people might not like that terminology. I could water it down for you to make you feel better about yourself, but I won’t. Why? Because being property of God is better that all the “freedom” and riches in the world, combined. He loves is a never ending ocean of peace, joy and mercy. His path is straight and true. His thoughts for you are more than could ever been numbered. All He ever wants for you is the best.

“Wait, how can you say that God wants to best for you when you daughter has a brain tumor?”

Easily. I understand that my life or Abigail’s is not limited to this world. She is not here just for my enjoyment. She is God’s child first, mine second. The game of life doesn’t last for 80 years. The game of life is an eternity, that’s what God has us playing for. His will is for all souls to be in relationship with Him. As His child, Abigail is helping that cause. Because God’s will is to have everyone come into relationship with Him, and He is omniscient, which allows for Him to use us the best way He sees fit to bring all into relationship with Him. We have to have faith in His plan and if Abigail saves on soul from Hell, her life is worth it. I believe that to be true for all believers in Christ. His life was the greatest expression of love, peace and joy in human history. Yet is was riddled pain, suffering, and sacrifice to the point of death. Are you greater than Christ?

We pray for Abigail to be healed each and every day. That is the easy prayer. God can heal. Plain and simple. The more difficult prayer is that we ask for grace and understanding in the midst of this difficult situation, trusting that God has a plan. We will not twist God’s arm into healing her, if it isn’t a part of His eternal plan. I want my daughter to live. I couldn’t imagine her not being with us, but I know God has a plan that is greater than what I see and the pain we will walk through. His ocean of love is big enough to cover our pain…

One Life at a Time

We received this message from someone that has been following Abigail’s story. To God be all the glory! 

“Earlier this week I had the privilege of meeting with a young woman 22 years of old and 19 weeks along in her pregnancy. She found herself in the middle of a crisis pregnancy. The father of the baby left her, her parents gave her no support, and she had just had a doctor’s appointment in which she learned her baby boy did indeed most likely have Down Syndrome (3 indicators and a positive blood test). She was devastated. Scared. No terrified is a better word. The doctor recommended and I would say was “pushing” her to have an abortion.

And indeed she had an appointment already scheduled with Planned Parenthood scheduled for today, September 4 before we spoke. She was convinced that she couldn’t care for a baby with special needs, that it would be better for the baby to not be born because of various reasons. The bottom line: she is scared, doesn’t have support, and all the doctor said was abort the fetus. She had pictures of her son in her hands. Tears streamed down her face. So broken. So hurting. So afraid of the unknown.

I asked if I could share the story of Abigail Noelle. She looked at me funny but said, “Sure.” I shared with her Abigail’s story. I shared very openly what you wrote for the birth announcement that described the 18 week and 30 week appointments. I continued on to share that little Abigail would turn 4 weeks on Thursday. She was in shock.

I looked at her and said, “Abigail is still alive. Yes, her parents are in a great pain AND they also have joy in midst of it because they have their beautiful daughter in their arms. Had they aborted Abigail then she would not be here.”

Totally enthralled by the story and bawling at this point the young woman asked if it would be okay to see Abigail. Umm….of course its ok! So she saw multiple pictures of Abigail. She kept looking from Abigail’s pictures to her ultrasound picture. The battle for this baby boy was intense. After 30 minutes of talking she said, “I can’t kill my baby. Look at Abigail. She’s beautiful. She’s alive. She’s a miracle and here. I can’t kill my son.”

Then I held her. She wept the deep tears of a Momma. After praying together I asked if she was ready to cancel the abortion appointment. She said yes. I handed her the phone and she cancelled the appointment right then in front of me. She said, “My son will live and not die. I am his mother and will love him no matter what. I don’t know how I’m going to do this but I won’t kill him.”

I literally just left Panera and meeting with her. She is doing well. She saw the ABC story yesterday online and said, “Without Abigail I would have killed my son today. I love Abigail and her parents.”

And so I will work with her on getting her set up with services and walking her through the pregnancy and probably be there when baby boy comes BUT she chose life because of Abigail’s life.

God is a big big big God who uses everything for His good and glory.

I hate the pain that you are going through on this journey and I’m so thankful that you are sharing Abigail with the world. That is just one baby we know of that was saved from abortion. who knows how many more there are.”

Today

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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.