I wish that I could tell you that I walked away from that appointment with more answers- but in all honesty I have more questions. It would be easier for me to list what he said, instead of “blogging” it.
1. The tumor has been there for a long time.
2. My EEG is not back yet, and possibly wont be back before my trip to MN
3. He did everything he could to tell me it was “malignant” without using that word.
4. He stated that people with this tumor do not live more than 25-30 years (from when? He skipped that question)
5. He strongly encouraged us against surgery - he said it would only “buy me” maybe 6 months more than with surgery
6. That would make me around my parents age…. I’m not okay with that.
7. He said that surgery could render me weakened on the right side - It could cause speech/memory/cause paralysis
8. He said “20 years is a long time”….. I say its not long enough….
I also have an appointment with MD Anderson in Orlando on Friday at 4pm, I want to have 3 opinions to review before we make any major decisions. The only way I can explain how this doctors appointment felt is to compare it to how I felt when we found out about Emma Grace in utero. The first doctor we saw told me to go home and wait for her to die… to live life as normally as I could until then.
I’m not okay with that.
So, we move forward and we keep searching. And above all we continue to pray- because our family has already seen God’s hand move mightily once, we know He is in ultimate control.
Remember to keep Kelli in your prayers as she travels for her doctors appointment today… she has become so near and dear to my heart.
Psalm 27 The LORD is my light and my salvation;
whom shall I fear?
The LORD is the stronghold of my life;
of whom shall I be afraid?When evildoers assail me
to devour my flesh–
my adversaries and foes–
they shall stumble and fall.Though an army encamp against me,
my heart shall not fear;
though war rise up against me,
yet I will be confident.One thing I asked of the LORD,
that will I seek after:
to live in the house of the LORD
all the days of my life,
to behold the beauty of the LORD,
and to inquire in his temple.For he will hide me in his shelter
in the day of trouble;
he will conceal me under the cover of his
tent;
he will set me high on a rock.Now my head is lifted up
above my enemies all around me,
and I will offer in his tent
sacrifices with shouts of joy;
I will sing and make melody to the LORD.Hear, O LORD, when I cry aloud,
be gracious to me and answer me!
“Come,” my heart says, “seek his face!”
Your face, LORD, do I seek.
Do not hide your face from me.Do not turn your servant away in anger,
you who have been my help.
Do not cast me off, do not forsake me,
O God of my salvation!
If my father and mother forsake me,
the LORD will take me up.Teach me your way, O LORD,
and lead me on a level path
because of my enemies.
Do not give me up to the will of my
adversaries,
for false witnesses have risen against me,
and they are breathing out violence.I believe that I shall see the goodness of
the LORD
in the land of the living.
Wait for the LORD;
be strong, and let your heart take courage;
wait for the LORD!
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((hugs)) One step at a time.
by LundieI’m sorry that you have so many more questions. While they are fresh in your head, you should write them all down so that when you have another appointment, you won’t forget them! I am still praying for you every day. Keep searching for answers. What a great passage you quoted from Psalms! You should print that one out and read it often.
For now, I think that you should try to relax; take a nice bubble bath…and watch some American Idol tonight! You deserve some normalcy.
by BeckyPraying for you each and every day. I’m so sorry the appointment didn’t go better. My heart goes out to you. (((Hugs)))
by CarriePraying…and so, so thankful that you have the appt. at MD Anderson. I don’t have a doubt in the world that you are going to fight through this medical maze and get the best, most accurate information so that you can pursue the absolute smartest course of treatment.
Stand firm…
by boomama((SIS)) Keeping you and Kelli both in my thoughts and prayers, I am right there with you as you move forward.
Love you!
by CatI’m so thankful that he didn’t say something shorter. 20 years IS a long time. I agree, write your questions down as you think of them, and always have someone with you at the doctor’s - can’t ever hurt to have a second set of ears.
Praying still & forever.
by gomomyourockJust keep moving forward through prayer and remember God’s grace is sufficient!
Sallie
by SallieI agree…..just keep searching. But if you don’t find anything right now, Just remember that we are always finding new ways to cure all sorts of things……..Praying you get the answers your looking for.
by The Pumkin PatchHeather,
by IsabelleI met with the lady who had cancer in her brain and got healed. She gave me a document titled HEALING SCRIPTURES. I would like to send it to you if you want it. Please contact me at my e-mail address or go to my blog to get it.
I am praying for you though… and lifting your family to the Great Physician.
Love from Canada.
I don’t have anything to say that hasn’t already been said; I agree wholeheartedly. You are in my daily prayers, Heather!
by RebeccaKeep clinging to that scripture! It’s perfect. And I’m agreeing with you…”I’m not okay with that”! Always praying.
by amandaI am so proud of you for continuing to seek out second and third opinions. That is so very wise. My prayers are with you, as always.
by Beth F.I am so sorry you are going through this, and will Keep you in my continuous prayers!!!!
by liz MonkeykissesI’ve debated about commenting since I heard about your situation. You and your family have been in my prayers daily. But today, I feel led to tell you a story. Yes, every situation is different and has different outcomes. Still… Since you keep searching…
Nearly forty years ago my aunt was diagnosed with a brain tumor. I suppose those must seem like the “dark ages,†but hey, I lived it so… ;-) In her case, they could do surgery. They explained the problems that surgery would create. They also told her (whether after the surgery or before, I’m not sure) that she would only have two or three years to live. She made it through the surgery. She had a great amount of rehabilitation to face. Her coordination and vision were affected. Immediately after surgery she couldn’t do anything but lay in bed. My uncle fed her, and met all of her other many needs. But she continued on, and on, and on… To be honest, it took years to re-learn how to walk, re-develop her coordination. But my aunt and uncle have gone on to adopt and raise a son, survive two bouts with breast cancer and finally get her vision corrected. She has always been a very beloved aunt and still IS! She has always led a very active life. And I couldn’t help sharing her story after reading yours.
God is good!
by AnonI am praying for you! Found your site alittle while ago through Allison’s (domestic adventures) and had already been encouraged by the faith and strength in the Lord you demonstrated with your daughters struggles…and now this…I sincerely pray that God will work wonders with you as He did with your daughter!
by KatieYou are in my prayers.
by CareyWe continue to pray for you Heather. We will pray for wisdom as you get these other opinions. We pray for peace and grace and strength for all of you. We know how it is to get such confusing information. We pray the Lord will help you to get some clear direction.
by LindaWe send love and prayers (the we includes my husband who has joined me in praying for you. He is in a place to understand just what you are going through. He wept as he prayed for you this morning).
I am praying for wisdom for you and your family so you will have confindence in what ever dececisions you ultimatley make. Hold strong. God and all your friends are with you in this journey.
by julieHeather,
Please know that your story has touched me deeply and my heart weeps for you and your family. You are in my thoughts and prayers daily.
Such a heavy burden, I wish I knew God’s plan for you sweetheart, I wish I could tell you that it will all be okay. All I can do is pray and pray and I will every single day.
Thank you for sharing that beautiful music, I’ve added it to my blog, it makes lightens my heart and thank you for sharing your story, you are helping so many people by sharing you have no idea.
Much Love & Many Hugs,
Cori
by Coriheather.
continuing to keep you in my prayers. truly God’s strength is perfect in our weakness.
mary
by MarySo glad to hear you are getting 3 opinions! And if they don’t all agree, I will pray that God gives you guys wisdom. It shocks me a little that it has been there “a long time.” I’m praising God that you have not had to deal with it before now, especially not while things were so critical with Emma Grace. Praying!
by CindyHeather, I believe you are engaged in the right process - getting the best medical advice available from numerous sources. I’m praying that through all the questions and the various opinions that the Father will provide you and your husband with clarity on the best combination for you.
You’re wise in seeking out counsel and I’m totally confident that you offer it all up to the One who made you, the One who sees the beginning from the end.
My heart continues to ache for the process you’ve been thrust into…all I know to do is to continue praying…and you can count on that.
He remains Emmanuel, every moment.
Thank you again for sharing your journey with us.
by LyricYou’re so right to get other opinions. Make the decision based on what feels right to you, not what some doctor tells you. Besides doctors don’t know everything, God does! and He is on your side!
by KathleenStill standing beside you in prayer, my friend.
by GiBeeI just wrote this whole thing and it got erased! Anyway, I will make this one shorter. I was thinking today that maybe part of Emma’s journey was meant to prepare you for this. God allows things in our lives to encourage, and strengthen us. And you are by far the strongest person I know. And I am proud to know you, you challenge me in ways I didn’t know I needed to be challenged! Thanks for being there for me when I needed it, and know I am here for you as well!
by ShaynaSo if he’s right, surely the doctors at Mayo will agree. And hopefully they won’t. Surely their combined experience is much more than his. Did he seem unhappy that you were going up there? ‘Cause I bet he’d take his wife there in a heartbeat!
by Dee DeeAnd yes, 20 years is sort of a long time, as stated above, simply because of the research they’ll have done by then & the new things they’ll likely have to offer!
by Dee DeeBut, like you, I still wouldn’t settle for his opinion. You’ve shown you’re not a settler. You know what a big God you serve.
by Dee DeeHey You~
First of all I have felt such a peace as I have read each of your posts. I feel strongly that this is going to be a bump in the road for you……but so NOT the end of the road if that makes sense. It’s gonna be hard. It’s gonna be something you wish you could have passed on. But it will be okay in the long run. You will still be here. I truly believe that.
Remember that 20 years really is a long time….a long time for them to discover greater treatments for your tumor. If Parker had been born even 5 years ago he wouldn’t have made it. In the last 8 years more has been discovered to make PH a chronic illness than in the last 50.
Your doctor may be looking at surgery from HIS level of expertise. When you go to Mayo they will be looking at potential surgery from THEIR level of expertise.
We love you. We are praying for you.
by Tammy and ParkerAh, the medical process is such a pain in the batooty. So confusing at times.
You have two consolations: The Lord is your strength and, when they tell you that “It’s all in your head.” You can say, “I know THAT!”
by groovyoldladyFather God,Creator of Heaven and Earth, Shaker of mountains, We are so thankful that you are making a way for Heather to get all the information You want her to have. We ask you for discernment Lord not only for Heather, but for her husband as well, may they stand in agreement. May the path YOU want for them be fully illuminated so that there is no doubt , no wavering, no second guessing. May YOU give them total peace in everything they hear and consider over the next few weeks. As they go from place to place we still seek Your mercy and compassion. We ask that instead of growing from day to day, the prayers of Your people will prevail and the touch of Your hand will cause this tumor to shrink moment by moment. We trust Your will and Your plan for perfection lies in YOU alone. Lead them to Your perfect plan.
by bubbebobbieBe Glorified each step of the way. We pray in the Mighty name of Jesus by whose stripes we are healed. Because of Jesus, Bobbie
Praying, praying, praying. You are an amazing woman, Heather! Keep the faith!
by JanisI’m so sorry! God is there and I am glad you are staying so close to Him!! ((Hugs))
by TirzahNo matter how wise a doctor you seek your prognosis is dictated by the one who loves you most and knows you best. Every day ordained for you was planned before you were created. He knows and has it under his control.
I just continue to pray for you. To ask God to give you a peace that passes all understanding. That any confusion and fear would be washed away in His perfect love.
He is enough Heather.
xxx
by Cheryl...from the belly of the whaleI love doctors, I really do, but their truth is not always TRUTH. So let it roll off your back, Heather, and keep your eyes FIXED on the one Physician who numbered your days before you were born. Like Hezekiah, ask Him to lengthen your days until you are wrinkly all over (very soft those wrinkles are) and going for daily walks with your husband, because afterall at 94, you have to stay in shape. Amen? I’m praying a miracle over you girl. I’m asking God to amaze and go against everything that can be seen with eyes…
by Holly SmithLovingly and with much prayer,
Holly
God is so good in all things, even this. But I think you already know that…
Praying for you and praising God for allowing you to be his tool. And what a vessel you are! You, my friend, rock to the nth degree.
Now go kiss your family again and play a game of Sorry! That may just distract you for a few minutes while you’re whooping everybody’s tales.
by ShaleeHi Heather. I came across your blog about a month ago and have been following it ever since. I prayed for your Emma Grace and for Kelli and was so heartbroken to read your post declaring you had a brain tumor. We have had a hard year, too. Not comparing it to yours but hard. You can catch up on our journey at http://www.journeytome.com then public journal Tatumn Hope Crawford. We have seen the hand of God move in miraculous ways this past year and I firmly believe that our God is still in the Miracle Business. I came across this piece fom the Living Proof blog this morning and I e-mailed it to my friend who is still walking it out with the Lord (Myer Massey)I told her it was a Word form the Lord for her and as I sent it to her I felt like the Lord wanted me to send it to you as well!May it renew your strength so you will continue to soar on wings as Eagles. (Isaiah 40:31)
Praying for you,
Stephanie
Count it a joy, Dear One
by StephanieWhen life gets hard.
God is doing something huge!
He is also proving
That you are NOT a fake.
Be brave, Mighty Warrior.
Your God is with you!
When waves are crashing,
Stand to your feet,
Throw your head back
And feel the wind of the Spirit!
God is painting a masterpiece
With multi-colored trials.
Go forth and display
Divine special effects
To the great glory of God.
YOU CAN DO IT!
Hmmm. Seems a little odd to have a brain tumor and not treat it with anything! I’d be like you are and seeking some additional opinions.
Praying that you will find the right doctor and have great peace about the path God wants you to travel. Praying, praying, praying.
by weavermomI’m not ok with it either. I firmly believe God is with you guiding you in every step you’re taking.
There is nothing sufficient for me or anyone to say except love and hugs to you and your family, and we are praying.
MD Anderson is excellent. We’ve had experience with MD Anderson Center in Texas.
by melodyHeather,
The Lord has given me a peace about you, even in this gloomy weather we are having here in Texas. I know God is in control, yet I will always lift you all the way up to the throne.
I read this today in my journal and thought of you.
Jeremiah 6:14
by Paulette1958You can’t heal a wound by saying its not there.
I am so thankful you are not ok with worldly answers only, keep getting more opinions.
You are loved
Good for you for not sitting back and just accepting what the Docs say…it’s here that God really IS the ultimate physician (sometimes it just takes a little extra work to see which earthly physician he’s working with…) Still praying, daily.
by sarahgraceOften I have not posted because I did not think I had anything more to add than what was there. But now I realize you need to know how many are praying for you, so if nothing else, I can let you know that I am praying for you too. You are an inspiration. God shines through you, especially in those times when you feel the weakest. We see Who lives in you by everything you post. Thanks for staying real and not glossing over things. You are a blessing and I hope we can be one to you.
by Amy TWell…my goodness, huh?
One very good thing to keep in mind is that 20 years is 20 more years for them to work on a cure or different treatment. A LOT can happen in the medical field in 20 years. Look at the past 20 years and tumor treatment and compare that with now. There are a lot of people who do nothing but eat, sleep, and breathe being the ones to find that cure.
God knows what He’s doing. Even when we want to say, “huh?” He knows. :) I know you believe that with all your heart. :) Hang tight and keep asking questions. Emma Grace taught you well there mom. :)
dawnz
by dawnzI don’t have anything more to add than what has been said… but I wanted to let you know that we are praying for you here in the Smoky Mtns.
by Amy BethA doctor once told me my son would always suffer from constipation when he was 2 years old (now 7). With another doctor’s help and some medicine I found on my own he’s been constipation free for 2 years. A doctor once told me my son would always be short. He’s not, he’s average and growing taller daily.
A G.I. once told me that diet didn’t matter regarding my ulcerative colitis. So wrong!
Taking charge of your health is one of the most important things you will ever do.
I’m praying for you and for wisdom and strength through all of this.
by KrissyDoctors amaze me, I am soo glad that your not taking what he says at face value, and are continuing to search out your answers - from a doctor you TRUST - I know this goes with out saying, but you have to trust those your working with -
As with everyone else your being held tight in my prayers -
by JennYou totally shouldn’t be okay with it! We have HOPE. Without it…well, we’ve got nothing.
by SusanKeeping you (and Kelli) in my continued prayers!
Dear Heather,
You and your family have been on my mind all day, as I’m continually praying for you all. I’m sorry your appt. didn’t give you more answers but I’d make a HUGE list of all my questions and take them with me to each and every dr.
I want to share something, now it’s not as significant as being diagnosed with a brain tumor but I was worked up and tested for one.
Let me start at the beginning…after my 3rd daughter was born, I literally woke up one morning with my entire body out of wack; headaches, tachycardia, rapid weight loss, blurred vision, nausea, and shaking. My husband freaked and rushed me to our family dr. Well, the first thing this dr. said was let’s do an MRI to check for a brain tumor. I promptly dissolved into tears and shook uncontrollably. What followed was weeks of uncertainty and the constant dread of hearing my death sentence. Needless to say, I turned to God with all of my fears and prayed and trusted and prayed even more. I cried in despair and told Him my deepest fears of leaving my husband and my 3yo, 2yo and 5 month old daughters motherless. What was amazing and awe inspiring was the way I was comforted by prayer, the Bible and others praying for me. I realized that God made me for His glory and that He loved my girls more than I ever could. My girls were a gift given to me and I knew that should the results came back in the worst case scenario God would take care of them and my husband. There was something so comforting and secure in that knowledge. Guess what it all turned out to be?? My thyroid and heart. True it was a relief but during that uncertain time, I truly thought I might die and the Lord made me ok with that. My heart is just so heavy for you and your having to deal with all of this. I am still praying and checking your blog for your updates. From all the comments left, I’d say you’ve a little prayer force working in your favor! By the way, I love your Emma Grace’s smile (: She looks like a little ray of sunshine! I have an Emma of my own.
Molly (:
by MollyHeather - My prayers are with you as I pray for good health for you and a long life to enjoy your kids…and your grandkids.
by Megan KHeather - Just wanted to share another positive story. In Dec 2005, my father was diagnosed with a Stage IV Glioblastoma Multiforme brain tumor, a cancerous brain tumor that usually claims its victims in a matter of months.
by DonnaWe live in Virginia and my Dad is being treated in an experimental program at Duke University. 1 1/2 later, he’s still going strong and they have told him and us, that with treatment, Dad will NOT die from this brain tumor. Rejoice and Praise God!
You had/have SO much strength for your child. Just wanted to give you continued hope to keep pushing for your battle.
We’ll be lifting you up in prayers, too.
God Bless!
Hold on to HOPE, Heather dear, for that is what will see you through. Prayers continue for you from Iowa.
by ShelleyWell….Okay then!
We’ll just invite this Doctor (and any other nay-sayers) to the official YAY! GOD! reunion that I am volunteering to plan. What a celebration we will all have when God demonstrates His power by healing you…completely…by giving you a supernatural miracle that even a number one medical facility can’t explain.
We’ll find a mid-country location (or Florida works too!)…..I’ve asked Gibee to be on the Heather’s Miracle Reunion Committee….and she has agreed. Diane J. will be in charge of the menu planning…as she always has the best Sunday Dinner posts! So the plans are being prepared, Heather…they’re saved on my PC in a file entitled: Heather’s Miracle!
Can you visualize all of the happy-dancing there will be?
I can!
So we continue to be honored to storm the gates of heaven on your behalf; we will reverberate cyberspace tomorrow while clicking on to BooMama’s fund raiser; and with great joy, will anticipate the day that God will heal you completely, giving witness to your inspiring faith and His great love and promise!
You! Are! Loved! Heather!
Diane
by DianeHeather,
I am here in Orlando. Is there anything I can do in real life for you Friday afternoon or evening? I am praying!
by LynnJusted wanted to tell you again that you are in my prayers. Not that what I think matters, but if were in your shoes, I would follow the same course of action that you are.
by sarahGood luck at M.D. Anderson- I hear that they do amazing things.
Sorry about the typos- I have a kiddo on my lap.
by sarahI have been meaning to ask, did I miss it or have you figured out whats wrong, and why your so dizzy? I know you mentioned that they did not think it was due to the tumor, but did they figure it out, or at least give you something to try to help you with it? I cant imagine dealing with all this with the whole world spinning!
by JennLove & hugs from our family to yours…xoxoxox Tamara & Crew
by Tamara CosbyWell girl wave as you head to Orlando, you will be passing me. I am praying for you!!!
by Laurel WreathContinuing to pray, Heather. . .
by TulipGirlHeather,
by cjmjlmmrWe live in the Twin Cities - near the airport. If there is anything we can do while you are here, please don’t hesitate to ask. We will be praying for your family.
Jen
Heather - I was just reading this post again and praising God for all that we will see through your life. Especially Heather right?
All the fighting and all the lessons you learned through Precious Emma Grace have equipped you head of time in how to fight in this medical community.
Your Easton is on my mind and she is going to be on my girls prayer list. They are 10 & 11 and are holding her before God as she walks through this.
Again tonight - please know he sees each tear - He loves you all… praying for a night of rest.
by Cheryl...from the belly of the whale...I’m so sorry this appointment didn’t go as well as everyone was hoping. Third time’s a charm, right? :)
God bless you tonight, Heather, and know that I’m praying.
by Sarah's in the Midst of ItHeather, I truly believe all of us who are gathered for these blog awards were meant to come together to pray for you. Know that you will not be forgotten by our family in daily prayer.
by Alice Guntherstill praying…
by Janice (5 Minutes for Mom)Hi you!
Just got home but I’m gonna wait to tomorrow to call you, k!
Sweet dreams -
by kelliYou’re such a strong, amazing young woman. Instead of crumbling as so many would in light of this situation, you have risen to the occasion and are seeking knowledge about what is happening with you. Knowledge is power…just as faith is power.
Doctors are wonderful…but they are only human and humans make errors.
My nephew was in a car accident in 2000. He was in a coma for 4 and a half months with a severe brain injury. Two days after the accident my sister asked one of his doctors for his prognosis. The doctor looked at her in disbelief. “Prognosis??” he said. He kicked a chair that was sitting against the wall and said that Allen would be no different than that chair. He said there was NO prognosis. Only acceptance of that fact. He then said “that is if he lives.” I remember the hush that fell over all of us and our mouths dropped open for about 5 seconds and then my sister said “I don’t think so” and she turned and walked away from that doctor. She went straight to the head of the hospitals neurosurgery floor and told him that that particular doctor was to never, ever go anywhere near my nephew again, she didn’t want anyone with any negativity near him.
It was a long road but my nephew did come out of his coma. His mind is perfectly fine.Long term memory, short term memory AOK. His body has issues. He remains in a wheelchair as his left side is weakened and he can no longer make his left leg and arm function properly. But he is nowhere near being an inanimate object like a chair.
So doctors don’t know everything. But I’m sure you already know that. I don’t sense one tiny bit of give up in you. No doubt in my mind that you’re going to whip this.
Hugs~
by VictoriaStill praying.
by KilikinaHeather, I have been reading your story for about a week now. It is very touching to me, because I lost my mom last year to a brain tumor. I’m not going to tell you any stories, cause that’s not what you need right now. But I do want to say that your positive spirit is very encouraging to me. Go get your third opinion. I’m praying for you.
Hugs,
by MelindaMelinda
In a perverse sort of way, it’s almost a blessing you know your way around the medical world well enough to get several opinions. How frustrating to walk away with more questions than you walked in with. Still praying.
by BarbPraying for you.
by Steph VGwhile reading this today a song from church came to mind.
words are:
Whose report will you believe?
We shall beleive the report of the Lord
Whose report will you believe?
We shall believe the report of the Lord
His report says I am healed
His report says I am filled
His report says I am free
His report says Victory!
We do not believe the Doctors reports in our spirit, we only have to listen. We believe in our spirits that you are healed. Speak to that Cancer! It is gone in the name of Jesus.
by VickiStill praying here in England. I have told so many people about you, it feels as though you are part of our lives. 20 years is a very long time for the development of science and cures to be found. Never take your eyes off Jesus and those mountains will dissolve. My whole family sends their love and prayers.
by LindsSupporting you in prayer, Heather. {{HUGS}}
by Mizbooks