Okay, so here it goes.
I met with the Neuro-Oncologist this afternoon. He was very kind and very sympathetic yet awkwardly optimistic. All of my other doctors have been nothing like that. What laura shared regarding this appointment was very accurate, and there isnt much I can add to it. I will skip to the Neurosurgery appointment and try to share as much as I can, but if I miss something I will have to come back and add it later. Right now, I am in information overload, I am going to list things instead of blogging them- that seems easier than trying to carry on a conversation. These are the notes he wrote for me, during the consultation (which was wonderful, I only had to sit and listen- he wrote the important stuff out for me).
-The surgery will last 4 hours. He will not shave my head, he will shave a strip of my hair on the left front side above my eye. I will be in ICU for atleast 24 hours, and then will be in the hospital for another 3-5 depending on recovery.
- The benefits of having surgery:
a- Diagnosis. There will be no brain biopsy, he will go in and take a “snapshot” piece and have it run to the pathology department for diagnosis- once the diagnosis is made he will remove it. The only reason surgery would stop at this point would be because the pathology came back non tumor (infection), but this is very unlikely.
b- Removal of visible tumor via MRI (this will be an intraoperative MRI)
c- Maximize my life expectancy
He said that without surgery or radiation, I was looking at 5-7 years life expectancy. With radiation alone possibly 15. With surgery, my odds of a longer life are greater- but there is no “guarantee”.
Risks:
He told me to expect to have right side motor paralysis for some time after surgery (could be hours, days, weeks or months)
Permanent disability [5-7%] (stuttering, unable to speak fluently (searcing for words) right hand difficulties-) It should not effect my legs or my neurological status.
Induction of seizures [2-3%]
Major stroke or Death [1-2%]
Infection [1-2%]
He said that there really wasnt any other option if I wanted to have quality of life, he said that the tumor is quite large and has been there for atleast 10 years (BIG difference from the other guys who said 2-5) He said that it is slow growing, but WILL come back, there is no cure for this, it is terminal and I will at some point have another tumor either in the same location or some where else in my brain. He said that when it comes back, to hope that it is no where near my motor strip and that it is on the right side of my brain.
He was prepared to do the surgery tomorrow- I wanted to get my family here, and make sure my kids were taken care of first. So we scheduled for next Thursday. I wanted to let you know that your donations have been such a huge blessing to us in this time. I have no idea how we would have arranged flights and hotel rooms for my family and marks family if it weren’t for you (thank you sooo much Jeff and Cathy for your frequent flyer miles!) The burden that your donations have releived is unexplainable. My mother in law will be flying to our home on Sunday evening, and will stay with my older kids. My parents and Emma Grace will be flying here on Tuesday (they are bringing Emma because medically, they are equipped to assess her) We just got their hotel room in the same hotel we are staying at, which is a huge blessing.
How am I? I am a bit overwhelmed, but glad to have a game plan. I am not excited about someone cutting my head open and touching my brain, but I am confident that these doctors are the absolute best and will take very good care of me. I am confident that I have been provided for this far- Christ isn’t going to take his hand off me now!
I wish that I could tell you that I was the pillar of strength after the appointments today, but I was not, and that is okay. I think today everything has come to a head, and the magnitude of the situation is weighing in me. I have cried more today than I have in the last week, but at the same time- some of those tears are tears of relief.
I am not sure why this has happend to our family- I am not sure what God’s plan is in this- But I am confident that He has one. I am not of the mindset that this is yet another horrible awful thing that my family has to endure- I, instead, look at all the blessings that have come from it- and the fact that I have hope.
I am owed nothing, yet i have options. How awesome is that.
I wanted to share with you what happened when we first got to the Gonda Building (where my appointment was). There was a lady playing the piano and another woman singing. Mark and I walked over there (We were early for our appointment) to listen to them sing. As soon as we got there, the lady started singing “Great is thy faithfulness” and I started to weep silently.
He is faithful, always. Even in the midst of this crisis in our little family – He is faithful.
I then went to the gift shop to kill some time and sitting on the counter there was silver jewelry. The necklace had a pendant in it with a tiny little mustard seed. Next to it was a bracelet that had the following verse on it:
“Call on me and I will answer you and tell you of great and unsearchable things of which you do not know” – Jeremiah 33:3
I purchased both and wore them with confidence into my appointments. When I felt weak, I would rub the pendant on the necklace- when I looked down while I cried, I saw the inscription on my bracelet.
He is good, and He has never left me. He never let me go.
Matthew 17:20 “For truly I tell you, if you have faith the size of a mustard seed, you will say to this mountain, ‘Move from here to there,’ and it will move; and nothing will be impossible for you.”
He is moving my mountain – He is giving me my miracle through surgery. His ways are not my ways, I would rather it just be gone (and it still can happen, I fully believe that) but I praise him for the options and for the hope.
Today is a good day. Even through the fear and the tears, it is a good day.
Dear Heather,
You are awesome and an inspiration to us all. I will continue to pray for you and your family during this time.
May the peace of God rule in your heart!
You continue to have a huge impact on my life. I’m praying for you. I’m glad you have this blog, it’s such a blessing. We lost an adoption last week which devastated me, but through your story and other ways that God is speaking to me, I have much to be hopeful about. I can’t wait to hear how God will heal you.
First PRAISE THE LORD!
I love the Lord because He hears my prayers and answers them. Ps 116:1
This is part of what I wrote over on my blog. Have a blessed evening.
Boomama held a web-a-thon and Especailly Heather and her family are so thankful. And all over Blogland people are praying. So I would like to add a new step…. I am hoping that on May 3rd we will all come together and Fast for Heather. I will not ask you what type of fast you are going to do, as many of you are pregnant and food fasts are not safe for you , you decide what is best for you to do. However I think the kids would love it if you declared it a Holiday and fasted from “book work”… hee hee
The Lord says in Matt 6:17-18 But when you fast, put oil on your head and wash your face, so that it will not be obvious to men that you are fasting, but only to your Father, who is unseen; and your Father, who sees what is done in secret, will reward you. So that is what I am asking you to do. Together we will wait and see what the Lord will do.
Let’s fast and pray for Especially Heather, May 3rd. It won’t cost you anything but time.
Because of Jesus, Bobbie
The kids wanted you to have this:
O- P- T- I- O- N- S
Find out what it means to me…
O- P- T- I- O- N- S
He Cares, G O D
(ok, so Aretha may roll in laughter, but they mean well)
You are in my thoughts and prayers Heather. I am so truly thankful that most of your family will be able to be with you when you need them the most.
I don’t really know what else to say, but that I am thinking of you. Please take care.
Weeping silently (right as you wrote that!).
Heather, we used to have picture of a mustard seed on our refrigerator. I wrote on it Mustard seed’s FAITH.
I have faith for you and hope for you…I’m calling upon Him for you and asking Him to bring about a miracle in His time in His Way, asking Him to remove it.
Lord God, Be Strong for our new friends Heather and Mark and their family. Give them wisdom. Give them courage. Give them JOY. Give them healing. Bring YOU Glory, Lord. In the Mighty Name of Jesus, Amen.
I am so glad you have some concrete answers. I’m praying for your peace and for you to feel the Lord holding on tight! And you know, 15 years from now there will be solutions and cures and all sorts of new technology that may hold the answer for you. It’s amazing how medicine advances. Girls like Emma Grace and Addison wouldn’t be alive if they’d been born 100 years ago–so I’m holding onto hope for you that you’ll be looking at an entirely different picture a few years from now, one where the doctors use phrases like “cure”!
God bless y’all tonight!!
Heather,
I am so glad you finally have answers and a game plan. I will continue to pray for you and your family. Hang in there. You are doing great!
Okay. I’m trying to process all of this.
I think you definitely got the answers you were looking for. You have felt all along that surgery made the most sense – and today you show up at Mayo and have an appointment with a surgeon who confirms what you’ve said for the last two weeks. That’s a God thing.
And remember, if you need the names of those people I told you about last week (my sister’s contacts), shout me a holla and I’ll get you the info.
Love and hugs to y’all…hang in there.
I’m praying.
Continuing to lift you and your family up in prayer.
You were hoping surgery would be an option and confident that Mayo was going to be your best option. You were right. Praising Him for answers and options. Praising Him for the financial blessing that allowed us to really DO something to help you. Praying His complete protection over you and His hand on the surgeon’s hands during your upcoming surgery. THANKING HIM for touching my heart through you.
Blessings,
~Toni~
You were in my thoughts and prayers today as you have been since I learned of your situation. I’m so glad you were able to go to the Mayo Clinic and that you were right in your feeling that this tumor needed to be removed. Your instincts are spot on.
I will continue to keep you, Mark, the kids, your family and friends in my prayers. I’ll also be praying extra hard for steady hands and quick reflexes for the doctors on May 3rd.
Thinking of you, praying for all of you, as always~
Dear Father I pray for Heather and her family. I pray for the doctors who will do the surgery.
Heather you are in my prayers
I am praising God for a positive ray of sunshine here…and I will continually hold you and your family up in prayer, Heather.
hello heather: i just posted about Jeremiah 33:3 in my 16apr post. it is a comfort, too, to me to know that He is ALWAYS here when we are ready to call on Him. we are forever wrapped in His arms of love whenever we want Him in our lives. you are in my prayers girl
blessings to you and your loved ones this night
God bless.
Praising God for a doctor who not only gave you answers, but gave you a plan. Praising God that He had prepared your heart for surgery long before a doctor considered it. Praising God that your family will be able to be with you (and with Mark during the surgery). Praising God for quick scheduling so you do not have to wait too long.
And praying. Praying for no permanent side effects. Praying for peace of mind and heart as you wait for Thursday. Praying your older children are comforted and at peace with you away. Praying for Emme to make the trip without issue. Praying for a successful surgery, a steady-handed surgeon. Praying the tumor will not come back (even against the odds).
Thank you for sharing your journey. I feel so privileged to be allowed to pray for you and your family. You are teaching me so much.
I’m so glad that everything is ‘working out’ (for want of better words). You are such a blessing. And how kind of the doctors to agree to assess Emma Kate! Wishing you all the grace in the world.
Heather, I’ve covered you in prayer every day since the beginning. I pray for you throughout the day, as you come to mind. I pray for your husband, kids and parents, all the doctors, nurses and surgeons who are involved in your care. I’m so glad you finally had your appt. and are moving forward. God is faithful. You are right – He won’t let you go, His hand is on you. You’ve inspired me so much. I pray for the Lord to hear all the prayers being said for you. I won’t stop praying.
We are serving in Wales, UK and we have people here praying for you! I don’t know you, but I’m so thankful that we have a common bond in Christ.
Praying for you!
That’s great that you have a plan now. He knew it all along. Praying for safety for your family as they travel and for you and Mark, always. Praise Him for his wonderful signs of love.
You are constently on our minds, I have never met you but I am in awe of your strength and conviction before the alter of Christ. Love and Health to you.
How wonderful that you have such incredible doctors! I am all full of chills and prayers…
LOVE you – you are sooooooo amazing and you are going to be beat this!!!
Heather & Mark
You will beat this thing and as it is everyday your faith is an inspiration to me. I am glad that your parents and Emma are coming. I know that oyu and Emma have never been apart and it is probably more difficult on you than her as I am sure her grandparents are very bsuy loving, adoring and caring for her just as you do. I know that you have whatever it takes to recover from all of this. I also know it is difficult to see the good in it but you do and that is so important. You can and will do this and you are never alone!
I found myself up in the middle of the night last night thinking of you and praying for you, your husband, Emma Grace, your doctors and the rest of your family and friends. God continues to lay you on my heart at all hours of the day and I am praying…
Prayers for you. Prayers for your family. Prayers for the surgery you are about to undergo. Prayers for the doctors and nurses who will operate and provide your care.
Isn’t it wonderful to see God’s fingerprints all over this? The song, the gift shop experience. God is leading you so gently through this very difficult time. I praise Him for the wisdom He has given you and your husband as to what to do next and the provision to do it.
Isaiah 30:21 21 Your ears shall hear a word behind you, saying, “This is the way, walk in it,” Whenever you turn to the right hand Or whenever you turn to the left.
Still praying.
Heather, I’m studying the Book of Acts with a study group this year, and it’s truly amazing to see God’s faithfulness to you at the same time that I’m reading of His faithfulness to His servant, Paul. It’s also wonderful to read of YOUR faith and hope during this time.
I am praying for you daily.
I came here looking for an update and was glad to find it. I am continually lifting you up in prayer, Heather!
Praying for you. Rest in Him.
Heather, thanks for taking the time to share all the details, including your emotions. It is good to know where you are at so I can pray specifically. You were on my heart all night, each time I awoke I thought of you and prayed again. Keep on running into His arms. He is holding you tight.
Rest easy in that faith. God is there with you and He carries every tear in His precious hands. Love you much. Fight hard.
dawnz
Heather…You are an inspirational woman of God. I have stumbled upon your site in this past week, and have wanted to pray for you on and off ever since! The way you wrote this last post is testimony, if ever there was one, that “underneath are His everlasting arms”…He will not let you fall, He loves you and His plan for your life is good. It is clear to me that God is already using you to inspire, bless and strengthen many hearts, and that, in itself, makes me want to praise His Name!
Be assured of my faithful prayers from now on.
Much love to you, from the other side of the Atlantic
Rachel xx
Your faith is such an inspiration to others! My heart is with you. I cannot tell you how my heart breaks for you and your family, yet, your blog has lifted me up! You are an amazing woman and I believe God will use this experience for you to do his work and show others what He can do. God bless you!!!
Wow. The ways that God brought His word close to you before your appointment just give me chills! He is so awesome!
H. D.,
I love you! I am praying, praying, praying.
Mich
God is so awesome! As Beth Moore calls them, the Godstops were all over the place for you and that is cool!
The spirit of the Lord is upon you because he has annointed you to preach good news.
I read, “He said that it is slow growing, but WILL come back, there is no cure for this,” I and thought, “okay then here is where God steps in. ‘There is no cure.’ Lord Heal!”
I’m so glad you followed your instincts and made this appointment. God has great things in store for you and will bless your faithfulness to Him. I’ve been praying a lot for you and will continue to.
Wow! I don’t know if you read all of these blogs, but my goodness are you loved! Be assured that you are blanketed in prayer here in Sarasota, Fl! We will not stop praying that this would miraculously go away before Thursday. Even if it does not, we will continue to pray for a guided, steady hand of the surgeon and that upon your next checkup, nothing will be found, no remnance of the tumor! God is good and I am glad that you have a plan and are at a better place today than before when you all was up in the air.
God Bless you all and be safe. Keep your eyes, hearts and hands UP for that is the only true way!
Oh, Heather….this is awful, and I would never wish it for anyone, and especially for someone as wonderful as you.
But how many lives have you been able to touch because of what God has allowed to touch you??
How much glory has He gotten from all of this because He allowed this to touch you??
And how much closer are you to Him because He allowed this to touch you??
This entire matter filtered through the fingers of the Almighty One before it ever touched your life…I know it must sound so weird for me to say this…but God loves you SO much…and so do all of us.
Again, I wish with all I am that this had not happened to you…but I am so glad that I have met you and been privileged to pray for you. That is an honor for me as your sister in Christ.
Still praying….
God is so Good to give you such reassuring hugs. I will be fasting and praying for you on Thursday.
Continuing to pray for all of you Heather!!
Your sharing about “not being a pillar of strength” just reminded me that when we are weak the Lord is strong. Keep pressing on to the upward call, to the final reward . . . oh what a day that will be!
Heather, you just amaze me with how you are handling this. Even in the darkest moments you never lose sight of the Savior. I know that God is holding you in His hands and is with you and Mark at every appointment. I will continue lifting all of you in prayer. You are such an inspiration…..
In His Love
Kelly
Just wanted to say I am thinking of you and sending you my love. I have had two brain ops – not for a tumour but something that could have been just as risky and I am still here and well 18 years on. I believe you will get through it and out the otherside.
xxx
I’m crying again. I just can’t imagine all of this, Heather. I’m so glad that you are in His hands, though… it is the only place I can imagine being able to sit and ride out that type of situation. I’m still praying.
God bless you and yours.
Dear heart, After reading your blog, I want to share with you the story of my cousin Emma Jean, who like you was stricken with brain cancer at a very young age. This was many years ago, and there were fewer treatment options then than now. Her major concern was that her small children would not remember her, or share her faith. We, her family, gathered around her as she struggled through her experience. I was a young girl, and my faith was not very strong yet. One day she took my hand and smiled at me. She said, “Dear heart, I want you to remember that my life is in God’s hands. He may choose to leave me here; he may choose to take me home to Him. Whether He chooses to heal me in this life, or not, doesn’t change the fact of His power to heal–whether in this world or the next.”
She lived only a few months longer, but her faith and belief live on in her children, and all of us who loved her.
God bless you, and all who love you.
Wishing you the best and praying for you. Love in Christ.