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Thursday, September 26, 2024

AJ: Brain Tumor

Our 14 year old son, AJ, has a brain tumor.  


A synopsis of our journey to date:

August 19: AJ sustained a concussion at football practice

August 22:  Concussion symptoms had not improved and some had gotten worse.  Doctor ordered an MRI for the next day as a precautionary measure to see if there was any bleeding on the brain.

August 23: Doctor called early evening to let us know that there was no concussion damage, but the MRI revealed a tumor in AJ's right temporal lobe. The image below is from a screen shot of a video I took while our doctor was showing us the scan. In an MRI, what looks like the left side is actually the right side.  Not sure why it works that way!


September 1: Had a more advanced 'contrast' MRI done at the Children's Hospital in Knoxville

September 5: Traveled to Nashville to meet with lead neurosurgeon at Vanderbilt Children's Hospital 

Here is what AJ wrote to our family while driving back from Nashville that day: "I went to Vanderbilt today to meet with the neurosurgery team. I am really grateful for all of your prayers. The doctor told me that he has to do brain surgery, and the recovery is around six weeks. The surgeon will shave part of my head and cut open my skull in order to get the tumor out. The surgery is not scheduled yet so please be praying for me and the doctors. Unfortunately he also said that I will be unable to play football this year do to part of my skull being removed. There is no other family I'd rather be a part of.  All of you are special and all play an important part in my life. I apologize for the long text. Thank you."

September 11: Second opinion via zoom call with top neurosurgeon at Boston Children's Hospital (Dr. Lissa Baird) Highlights of that call:

  • Surgeon said the tumor is in a good place for getting access to the tumor etc
  • Fortunate that the tumor is NOT in the same place on the other side of his brain as that would have been much more complicated
  • Very fortunate to have found the tumor this early
  • Surgery risk (beyond the brain surgery risk itself!) would be blindness in the upper left vision field as the nerves that serve that function run through this part of the brain
  • Boston Children's has an MRI machine in the surgery room so that the team can take MRI images during the procedure and after the procedure to make sure they have taken out all parts of the tumor
  • Lab tests on the tumor take 4 weeks to fully analyze as there is some kind of process they go through to see how the cells grow.  This process will determine whether this tumor is malignant cancer or a benign growth.  
  • Treatment options will be determined once those tests come back
After this call we decided to go with Boston Children's and were able to schedule the surgery for Friday, September 27.  

Rachel and AJ arrived in Boston on Wednesday and were joined by AJ's birth mom, Brittany, on Thursday.  

After a morning pre-operation appointment and meeting with the anesthesiologist, they were able to spend the day together including Legoland Boston, Giacomo's (one of our favorite restaurants), Mike's Pastry, Paul Revere's house and the Old North Church (One if by land, Two if by sea).

AJ's surgery is 730am Friday morning.  

Some personal thoughts..... one is never fully prepared to hear the news that your teenage son has a brain tumor.  Rachel was out of town when the news arrived.  I called her to let her know and hoped to tell AJ later that night with her on the phone.  But AJ asked to throw the football in the backyard and of course he asked "So, what did the doctor say?"  So, I told him and let's just say the spike of the football was Gronk worthy.  

The news came at a good time just as AJ was heading out on a 3 day High School trip.  So, he was able to connect with his classmates as well as coaches and his football team so that the news could be relayed quickly without rumors or multiple requests for information.  

A couple of days into this journey, Rachel looked at me and asked "So, how are you doing?" and I asked her the same thing.  We both agreed that our experience walking through serious medical situations with a number of our other children, especially Hayleigh's near death experience in 2013, https://tsfga.blogspot.com/2013/10/hayleigh-longest-day.html helped us navigate this news better than if we had not had those experiences.  

We don't know why these experiences happen, but we have walked with the Lord long enough to know He is with us.  And so we have a sense of peace.  We know whatever the outcome, He will be glorified, but we are admittedly praying like we haven't prayed in a long time that AJ will come out of this season healthy and whole in every way.  We pray that he has a testimony of how God graciously took a concussion AJ didn't want to reveal a tumor before it became a threat to his life.  

For a 14 year old, AJ has been handling all of this certainly better than I would have handled it when I was his age.  Just this evening, his little brothers and sister called him.  And with the weight of this surgery tomorrow on his mind, here is what he did with little Theo (look at how delighted Theo is in the bottom left corner during the Facetime call).  AJ was focused on making Theo laugh and bringing joy to him.  

Yes, there is some fear.  Who wouldn't have fear when going into a surgery on your brain?  And yet we are commanded 365 times in Scripture (so I have heard) to "do not fear"  That is one command for each day of the year...and while we as humans are not strong enough to do that, Jesus is.  God put the best of life on the other side of fear....that if we believe and trust in Him then we will see His Glory.  The best is yet to come.  I believe that is true for AJ, and I believe God will use AJ and his story in ways that we do not know or understand at this time for His Good and His Glory (Romans 8:28).  

I will end this note with the prayer AJ's birth mom sent us after the surgery appointment was confirmed…..

"Sovereign Lord, You made the heavens and the earth and the seas and everything in them. One Word spoken from You and the heavens tremble, the earth shakes. You are the Author and Director of all of creation. We thank you for Your faithfulness and care over us. Your love that is never ending and unshakable. We trust You, Almighty God. Give us wisdom as we walk through this, to love and support AJ. Guide the hands of the surgeon. We are so humbled awaiting Your mighty miracles and to see You glorified each step of the way through this. Thank You that we belong to You, that AJ is Your precious child, that You have chosen us to walk with him in this life, and that You are working ALL things for Your glory and our good! Praise You that You have made AJ whole and healthy!!!! In Jesus Christ’s Mighty Name we give You all glory and honor and praise!"

Please join us in praying this prayer for AJ.  If you are willing to fast on Friday, I invite you to join me in fasting and praying for AJ throughout the day.  

God bless,

Andrew

Fear not, for I am with you;
be not dismayed, for I am your God;
I will strengthen you, I will help you, 
I will uphold you with my righteous right hand

Isaiah 41:10

26 comments:

  1. i was wondering why i couldn’t fall asleep tonight…and now here i am reading this post and receiving the opportunity to pray for you and your family tonight and tomorrow morning. the verse that comes to my mind is psalm 139:10 — “even there Your hand shall lead me, and Your right hand shall hold me.”

    i am carrying AJ to the throne tonight and tomorrow, and boldly requesting God’s grace and mercy to help you in your time of need. ♥️ shalom, shalom!

    feather. ‬‬

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    1. my ladies bible study group is praying also. 🤍

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  2. Wow guys! What else to say but that we will be praying and holdng you all in our thoughts tonight. Thank goodness for the concussion whhch lead to early diagnosis...God's got this! Sending much love from us all.

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  3. Praying for AJ’s surgery and quick recovery. The peace of God that all of you are experiencing is amazing and nothing else is more important. “My ways are not your ways” our God days. I truly pray for God’s purpose and plans to work in AJ’s life and also with all of you. Praying for you and Rachel as well.

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  4. Praying for AJ this morning, as well as for his beautiful family who loves him. ❤️

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  5. Praying for AJ this morning.

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  6. I’m so sorry to hear this news,I will be praying for AJ & family this morning. I know in my heart AJ will be fine. Much love & prayers
    Dora Kashiwabara

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  7. God is writing AJs story and in total control of this scenario. God is good. Lord, guide the surgeon’s hands today. Wrap this family in your loving arms today. Amen. We love you guys! -Gail

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  8. I’m so sorry to hear this, we will be praying for everyone including the surgeons. You’re in the best hands at Boston Children’s!

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  9. Praying for AJ and your whole family! Praying God guides the surgeons hands and gives wisdom to the whole medical team and that AJ has a miraculous surgery and recovery.
    -Erica

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  10. Praying for AJ this AM and for the surgery and for great recovery

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  11. Praying for AJ, your family, the surgeons, and his support team. Giving you all a big hug and not letting go!

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  12. AJ is in good hands. The doctors' skilled hands. Your praying hands. God's powerful hands. I thank God for your faith and trust in His plan throughout all of this. We will be praying non-stop for AJ, the doctors and you all. - Katrine

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  13. Praying for AJ and all of you with love and faith in my heart that “ all things work together for good to them that love God, to them who are the called according to his purpose.” (Romans 8:28). Also, Jeremiah 29:11 “For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.

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  14. Thinking of you and praying for peace for AJ and you all and for skill for the surgeons

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  15. Dear Scott family, I'm so horrified to hear this news. I found out about this on Friday afternoon, when the surgery is happening, so I'm going to pray right now as soon as I'm done typing this.

    AJ is in my prayers, as are all of you. I pray supernatural peace and comfort to you, skill to the surgeons, and excessive favor from the Lord.

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  16. Heavenly Father,

    We I come before You today with hearts full of trust and hope, lifting up AJ in prayer. As they prepare to undergo brain surgery, I ask for Your divine presence to surround them with peace and strength. Guide the hands of the surgeons and medical team, granting them skill, wisdom, and precision as they perform this delicate procedure.

    I pray for healing and restoration, that the tumour may be completely removed and that AJ’s body may be renewed. Comfort their family and loved ones, giving them courage and faith during this time of uncertainty.

    May Your love and grace cover AJ, and may Your peace, which surpasses all understanding, guard their heart and mind. We place our trust in You, Lord, knowing that You are the ultimate healer and protector.

    In Jesus' name, we pray.
    Amen.

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  17. God will not withhold any good thing from AJ. Praying the Lord completely and miraculously remove all of the tumor and restore AJ back to full health in Jesus name!

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  18. Seems your family keeps your guardian angels busy 24/7, but they are doing a great job. I am convinced that AJ will recover to full.
    Heads-up!

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  19. My Dearest Friends Andrew and Rachel,
    AJ has been in my thoughts and prayers all day. I think the last time I saw him he was a sweet, energetic, precocious little 4 year old!
    In the picture below, he still looks like that happy, capable, positive young man...I am sure all of this along with excellent care, love from family and all of our prayers far and wide will carry him through the darkness into the light.
    We have had a particularly hard day here with Hezbollah terrorists to our north sending a barrage of missiles throughout the day and Syrian terrorists to our east attempting to breach the security fence between us that would enable to reach 5 communities including Kibbutz Afik. As I sought shelter along with the rest of the people of Israel, I could not help but think of AJ, standing up to his own demons of a different form. Tell him, please, like I tell myself EVERYDAY since that nightmare of October 7, 2023 that
    YOU NEVER KNOW HOW STRONG YOU ARE UNTIL BEING STRONG IS THE ONLY CHOICE YOU HAVE!
    May God hold him tight in the palms of His hands.
    Please give him a kiss from me.
    Love, Marla

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    1. Ah, Marla, the last time you saw AJ he was busting his eye wide open in the Afiq guest house as a rambunctious 3 year old!

      https://tsfga.blogspot.com/2013/04/israel-jerusalem-to-golan-heights-and.html (scroll down a bit for a look at his shiner) LOL

      Here is the other post with our goodbyes. Hard to believe it has been 11 years, that Kinneret is now a mom and you are now a grandmother!

      https://tsfga.blogspot.com/2013/04/israel-golan-heights-and-goodbye.html


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  20. Oh Rachel! You know you have my prayers for AJ and the whole family !!

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  21. Dear Scott family,
    we were shocked when this message reached us tonight while I am visiting Felix in Kopenhagen.
    By now, the operation should be over and we hope AJ is doing well and the tumor could be removed completely.
    AJ and all your family is incredibly strong in how you deal with the situation. We pray for AJ and all of you, that he will recover completely and you will find all the strength you need. Our thoughts and love are with you.
    Big hugs
    Heike, Andreas & Felix

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  22. My favorite family, always holding God as your higher power, strength and help at all times, through all your ups & downs… as it should be. You are such a blessing and amazing witness to all who know you and especially to your precious children. I stumbled upon your FB post last night just before falling asleep in bed. Immediately began praying for AJ and you all. He is a special young man… as are all your children… thanks to your patience, love for each, respect and great trust in Christ. God is good and He hears our prayers. Blessings to AJ’s full recovery and healing strength. Love to you all. Teri & Leo

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