AJ: Good News All Around

The title says it all....good news all around for AJ! 

After leaving Boston Children's Hospital, he spent a week in New Hampshire recovering, reconnecting with friends, and even apple picking with Rachel.  

He and Rachel arrived home October 7 and ultimately (due to fall break that week), AJ only missed 9 days of school.  His teachers did an amazing job at getting him up to speed on what he missed, and he has maintained his straight A average through early December.  

By late October / early November we received the official pathology report from Boston Children's on his tumor.  It is LOW GRADE (ie no cancer) and they do not expect it to come back.  If it does come back, it will likely be the same kind of low grade growth.  

He will have brain scans every 3 months for the next year.  Then twice a year for several years and finally once a year until he is 22 years old.  If the tumor does not come back by then, the doctors have said it will likely never come back; he will be free to live his life as any young man would.  

Before Thanksgiving, AJ had a field vision test to check for blind spots.  He has a small blind spot in his upper left vision field.  Having said that, the doctor said this could go away as nerves regrow etc.  Amazingly, the brain fills in that blind spot so that he doesn't notice it.  In addition, his 'regular' vision test was 20/20.  

If you would have told me this would be the outcome when we first learned of his tumor in August, I would have said PRAISE GOD!  So, PRAISE GOD!!!!!  My goodness we feel so very relieved and blessed.  

Texas - Oklahoma Football (Red River Shootout), Dallas TX October 12, 2024

I graduated from the University of Texas.  AJ's biological family are rabid Oklahoma Sooner fans.  My Christmas present to AJ last year were tickets to the Texas - OU Red River Shootout at the old Cotton Bowl during the Texas State Fair.  

How badly did AJ want to go to this game?  When we first learned about the tumor, he wanted to wait until after the game to have the surgery.  When we learned that Boston had an opening at the end of September, one of the questions was "Will we be able to go to the game?"  

Obviously, the surgery and his health and getting a potentially cancerous tumor out of his head took priority.  But the last question we asked the surgeon concerning the end of September surgery date was "Will AJ be able to go to the Texas - OU game in Dallas two weeks after the surgery?"  And to our delightful surprise she said "Assuming his recovery goes well and as long as you take him in a wheelchair, I think that will be fine." 

AND SO WE GOT TO GO TO THE GAME!  

Although this year's game was a blowout in favor of Texas, we had a great time.  And we got to spend a couple of days with my mom who was absolutely amazed at how well AJ was doing just 2 weeks after his surgery.  

He went back to school the following week and the only time he needed a wheelchair was this day at the football game.  That wheelchair allowed us to get much better seats than we otherwise would have had as our original tickets were in the nosebleed section on a unusually hot October Texas day!

Thank you all for your prayers and support the past few months.  We are so appreciative to have our extended family, NH community, Knoxville community, and people we have met around the world who have journeyed with us through this season of life.  

Blessings,

Andrew, Rachel, AJ and family

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....