AJ: Released From The Hospital

Leaving Boston Children's Hospital

A quick but important update... AJ has been released from the hospital!  He is now staying with some of our friends from New Hampshire for the rest of the week while he continues to recover.  

Since my last update Saturday morning, here are the highlights:

Dr Baird, the surgeon, stopped by and gave us some encouragement regarding AJ's vision problems.  She said it is not uncommon for vision issues to be present when working on this part of the brain due to inflammation and just generally disturbing that area of the brain.  

She would be more concerned if the vision issues persist for 6 weeks and encouraged us to give it some time.  So, that gave us all hope because his vision is definitely messed up right now!  Please continue to pray for a return to perfect vision.  

We are praying for pain relief as well.  The surgical team had 3 clamps attached to AJ's head.  These are the scars from the head stabilizer.  And, of course the scar from cutting his skin, pealing it back and cutting open his skull tends to be painful as well.  Rachel sent a video where the ICU doctor asked him to smile and even that hurt due to the muscles cut on the side of his head that are somehow used in smiling and clenching teeth.  

First time out of bed and sitting...

Working on vision and fine motor skills...

Walking and stairs...

Friends...

The famous apple juice (covered by insurance)...

A momma's love...

On the road to recovery....

Goodbye Rm 735

Prayer requests

1.  Vision returning to normal

2.  Pain reduction

3.  Renewed energy and stamina

4.  Healthy and whole in every way

5.  That God would be glorified in all that is happening

The Moms both said this was their favorite photo...

God bless,

Andrew

AJ: Surgery Day and Recovery

 

Rachel and AJ's birth mom, Brittany, praying with AJ before surgery

I start with that picture because there is nothing quite like a mother's love; AJ is doubly blessed.

AJ arrived 6am for his 730am surgery time.  Check out his awesome hospital clothes...

He met with the surgeon who showed him where the incision would be.  He made her a Lego Doc yesterday, and she laughed when he gave it to her.  

Prayer time prior to the surgery...  AJ found encouragement in 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." 

Before they took him back, AJ asked if they would please allow him to have his Bible in the surgery room.  They agreed!  Amazingly, when he started waking up from the anesthesia the first thing he asked about was his Bible.  Rachel and Brittany said he was initially distressed that possibly his Bible had not been with him because it was "his foundation and protection."  They assured him it was by his feet wrapped in a sterile bag.  They showed it to him, and he relaxed.  Was so encouraging to us to see that the first thing AJ was thinking about after surgery was God's Word!  

Back to the morning....after meeting with the surgeon, he was off for what ended up being a 9+ hour surgery.... 

A number of times I have been the one at the hospital during.a surgical procedure and the old Tom Petty and the Heartbreakers song "The Waiting (Is The Hardest Part)" always comes to mind. 

During this wait, we got to reflect on and experience the amazing community we have supporting us...from our Adult Sunday School class setting up a meal train the past few weeks, to families from AJ's school anonymously showering AJ and our family with grocery and gift cards to help lighten the load, to gift baskets delivered to the hospital to NH friends showing up to support AJ and Rachel....

To AJ's football team sending their encouragement and prayers....

To Rachel's cousin Kenny and his wife Tess insisting that she and AJ fly instead of drive, getting the tickets for them and offering a place to stay at their home in Boston (not to mention feeding them delicious meals)...

To all the amazing text messages, emails, comments on the blog, and social media posts from friends here in America and all around the world...Israel, Australia, France, Uganda, Kenya, New Zealand, Germany, .... we are so thankful and humbled by our community and so thankful to God for His presence in and through our lives.  Thank you for caring about AJ and our family.  

Around 5pm the surgeon, Dr. Baird, came out to speak with Rachel and Brittany.  She said that the tumor had mostly been out since 1pm but that she did 2 more scans to check the margins and do the detail work that she hopes will prevent the tumor from growing back.  

Here is the tumor.  When I first saw it, I was confused by the picture.  The white shiny stuff is 'gauze' like material and the tumor is sitting on that material.  I always thought tumors were hard but this looks more like flesh or a small organ.  Whatever it is, it wasn't supposed to be in AJ's brain, and it is now OUT!  

Dr Baird said the tumor was the size of a large grape.  She said from her experience in seeing hundreds of tumors this one looks 'low grade'....meaning not malignant....but the final determination of the pathology of the tumor will be take about 4 weeks to determine.  When AJ heard later that the tumor was likely benign, he let out a "hallelujah" / "praise the Lord" kind of statement of thankfulness (as did we!).  

The surgeon went on to say he will be on seizure meds for a week.  If the tumor is low grade, then the next MRI will be in 3 months.  They will follow AJ with MRIs for 8 years as even  microscopic cells from this tumor can regrow and they want to make sure to catch it very early should that happen.  She said regrowth happens about 5% of the time; if it does grow back it is usually the same kind of tumor (ie low grade).  She specifically said for this type of tumor there was a 'miniscule' chance of it coming back as a dangerous tumor, and she was very confident that if it did come back that there were effective treatment options which she outlined during her talk with Rachel and Brittany.  In summary, AJ will get MRIs every 3 months for the first year.  Then every 6 months for the next year and then yearly for the last 6 years.  

PRAYER REQUEST: She spoke about checking for blindness in the left visual field and the initial test that the neurologist did after surgery showed that there was a significant blind spot on the left lower field of vision....

Rachel said when this doctor was doing this vision test, AJ needed to keep his eyes looking forward and then tell the doctor when he could see his fingers come into view. There was a significant difference between the lower left area versus other areas.

This morning the doctor came in and said "You're the only person where football has saved a life!" He continued to check his vision and there is definitely something going on here that is not normal.  AJ describes his vision as slow.  He said its kind of like scrolling through your phone's picture roll quickly but still recognizing that there are individual pictures being stitched together.  In addition, he is having difficulty seeing things up close.  So, please pray that the Lord would heal AJ's vision fully.  

Rachel asked the surgeon about how she does these 9 hour surgeries and she said that she does this pretty much every day so she is used to it.  She said AJs surgery was fairly short for her and said that she get breaks when they are doing the MRI scans (they did 3 of them during AJ's procedure).  I thank God that He makes people like this with such expertise, stamina, and precision!  

When AJ first came into recovery he was very groggy, but he told Rachel he wanted to take a 'sick' picture.  Here is is.  LOL...

I was expecting a bit of a shaved head, but check this out!  I'm sure AJ will be thrilled with this scar as his hair will cover it probably before he even gets back to school in a couple of weeks....

I have a brain picture but I think I need to check with AJ before posting that one!  

He is in good hands...Moms Hands and God's Hand

Prayer requests:

1. For AJ's vision to be fully restored

2. No infections

3. Excellent nurses and doctors making correct decisions on all aspects of his care.

4. Reduced pain

Thank you for your prayers.  

God bless,

Andrew

Other Pictures / Items of Interest

AJ, back to being a teenager...

Rachel said AJ is obsessed with apple juice. He was asking if insurance covered the  surgery? She said yes. Then he said, “So you mean the apple juice was free? You must be so happy!” 

As happens sometimes due to drugs etc, his systems got backed up.  He said he really needed to pee, but he just couldn't go.  By the time they figured out a solution he filled a gigantic jug with urine that the nurse said was the most she had ever seen in a single discharge.  So proud!  LOL

A mother's love...

And, yes, AJ approved the brain picture....

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