Sunday, March 29, 2015


Home....Friends... Sunshine... Family...Music... Support... Exhuberance... Joy... Laughter...
(And to be honest, some tears and frustration too) but overwhelmingly grateful for your faith in Forrest and for this healing, healthy, happy time.  Here is just a sampling of this amazing first week home:

Pilates with Kay.  Tears of joy when she saw your new Noggin and your new abilities!

Michael's visit and gift of a "Voyce" fitness collar for Toliver!

PT & Work out challenge with Del! "Amazing". 

A surprise visit and hug for Nurse Karen who never lost faith in you.  

Lunch out with Matt sure beats hospital food! 

Filming with Tom for High Notes the documentary film about the impact of music therapy on your life. 

Jam'n & composing with JP & Nathan....
Music to my ears.

There's no way to know what the future holds, but we know it will be special.  Counting each and every moment's blessing.


Monday, March 23, 2015


Earlier today, Dr. Kumar delivered some magical instructions to Forrest..."Fly Away! Be Free!"  We weren't about to argue, so it is with great excitement that we announce that Forrest is home!!!  We are so happy to be back at BrightWood! 
Here is a link to a special message from Forrest:

Leaving the hospital!
We stopped to see Tom on the way home and he delivered this special poster from APTB
With Finn at BrightWood 

Sunday, March 22, 2015

Poster Child

I haven't thought of Forrest as a "child" in a long time. However we have often thought of Forrest as emblematic of the many young people we have met with courage, resiliency and compassion beyond their years.  But we were recently told by a phycician that "Forrest is the Poster Child for everything that can go wrong in a hospital".  I don't believe he meant that Forrest was in any way jinxed, just that his case is so incredibly complicated and he has spent cumulatively almost 2 years in seven different hospitals. Things happen...

During Forrest's extended hospitalizations we've encountered wonderfully dedicated, talented, and caring medical professionals. We have seen medical miracles happen before our eyes. We have watched bleary-eyed and distraught as Forrest has been saved from almost certain doom on multiple occasions.

 But we have also felt the terror and helplessness of being captive in hostile and dangerous hospital environments where one moment of distraction or inattention can result in a human error with catastrophic consequences.  It's a flawed system because, no matter how sophisticated and excellent the hospital standards and procedures are, in the end it comes down to human oversight.  

A few of the errors we have encountered almost cost Forrest his life.   But God and his earthly angels have always somehow been there for Forrest at the exact moment he was in peril, and he has survived . And so it was that on Friday Forrest was exposed to a medication known to be life threatening to him. We caught it.  Doctors were notified, specialists called in, and a battery of daily tests have begun to determine if his body will react adversely, as he did in the past, to this medication.  Will this medication affect his surgical site or healing? Usually the dangerous effects become apparent by blood tests in the first few days, and so far his blood counts are stable.  Though my heart still races just thinking of it, we are all beginning to breathe again.  On rare occasions this exposure has been known to have a "delayed onset", so it will be several weeks before we know for sure and can put this risk behind us. 

We've debated whether to share this incident in the blog and frankly I've been too upset to write anything at all. In the end we decided to share it because mistakes are part of the reality of any prolonged recovery. Hospitals are wonderful places of miraculous healing.  But even the best hospital in the country is still a dangerous place to be.  I hope that reading about Forrest's journey helps someone else understand how critical it is for every hospitalized patient to have a vigilant advocate by their side. Even with the best doctors and nurses in the world, we can't abdicate responsibility for our own medical safety and care. It's not only okay, it's critically important to be informed, to question, to be involved. And when mistakes happen, and they will, it's essential to work collaboratively with the hospital, the doctors, nurses, and specialists to define the risks, minimize the damage, find the best solution, avoid the catastrophe and .....get out of the hospital as soon as possible!  And that remains our hope and plan. If Forrest's blood work is still stable Monday morning and the last drain can be removed we are Brightwood bound!!!

Grateful for every day,
Mum & Team Forrest

Forrest celebrates Tami's Birthday in the hospital 

The best plan, no matter what life throws at you, is to keep moving!  So Pops Forrest and Toliver take over the hallway for soccer practice!

Go 44!!!

Thursday, March 19, 2015

Ice Cream Makes Everything Better!

Although the "grumpies" have visited briefly today, Forrest is having a good day.  Dr. Kumar is checking the surgical site twice a day and although he is pleased overall with how it looks, we won't know for sure for another 48 hours how well it is healing.  Two drains were placed in Forrest's noggin yesterday and if all continues to go well, those drains will come out this weekend and Forrest could be homeward bound on Monday.

We were able to get Forrest out of his room today!  It was a bit of an adventure maneuvering through various doors, elevators and groups of people with the wheelchair, Toliver and the IV pole with its assortment of lines attached to Forrest, but we made it downstairs to a cafe where Forrest enjoyed a "nommy nummy" pizza and dulce de leche ice cream for dessert.  He was his usual cheerful and talkative self, telling us jokes and stories and charming a nearby group of ladies that were admiring Toliver.   When we returned to 10N, we took advantage of the great Teen Room in the unit and played a competitive game of Wii Bowling with Forrest eking out a win by 4 points!

Thanks for all of the continuing messages of encouragement and support!

- Tami and Team 44

Wednesday, March 18, 2015

Post Op Laughter

Our prayers were answered today.  

Forrest made it safely through surgery this afternoon. Dr Kumar was relieved that the skin breakdown only occurred on the left side where there was more healthy tissue to work with.  If it had happened on the right side he felt he would have had to take a skin graft from Forrest's thigh to repair it! If we can avoid any more complications we could be heading home Monday!

For now we are happy to be back on 10N. Instead of napping, he can be heard chuckling to one if his favorite movies, Ferris Beuller's Day Off! 

A Okay.  

Thanks all for your love and prayers today and every day. Couldn't do it without you!


Feeling Safe

You were in fine form this morning Forrest, belting out a mash up of The Sun Will Come Out Tomorrow and This Is The Moment, during group FaceTime with Austin and Tom. I don't think there could have been a more upbeat send off to surgery.  

In pre-op the nurse asked you if you had any questions.  You answered "Nope. I feel safe with this new head.  Even though I have to have another operation, I'm happy because I feel safe and I know it's going to be fine."  Where do you get your faith and confidence? 

When you rolled into the OR in your wheelchair with me the first thing we saw overlooking the operating table was a gigantic flat screen monitor displaying the 3-D CAT scan of your newly reconstructed skull.  You grinned  ear to ear and announced with pride to the room full of doctors and nurses, "There's my new head! That is all my own bone!"

You've been through so many surgeries and setbacks, but you are surrounded by love and prayer.  Your faith, your eternal optimism, your wacky sense of humor and your joy sustain us.  You are safe, Forrest. And soon your Noggin will be healed and we will all be BrightWood bound!

With a grateful heart for the love and prayers swirling around Forrest. I'm certain the OR is humming now with Regae music and positive energy. 

Can't wait to hear what you'll say next.  

Mum & Team 44

Tuesday, March 17, 2015

Staying Strong

You made the most of this day, Forrest. During morning rounds when Dr. Kumar  thoughtfully explained to you exactly how he planned to fix the problem with your scalp, you remarked,  "That's comforting,  because I know you are a good and practical surgeon and you will get it done!" I doubt Dr. Kumar has ever been addressed exactly in that manner before...but he smiled broadly and agreed he would "get it done"!

 You entertained the physical therapists and nurses by singing a good part of the day. Off to the gym in the afternoon, you and Toliver worked on your balance and stamina until Toliver collapsed on the mat. We played cards and cheered for Nick's lacrosse game, even though Brown lost in overtime.  You talked to friends and your brother on the phone.   You and Tami read your many Facebook and blog messages, which encourage us all to know so many people care about you and your journey.  Then you showered and shaved to Bob Marley singing One Love.  

After giving your pal Toliver good night bunny ears, he snuggled in your lap, reluctant to leave you for the night. I overheard you whisper to him, "It will be okay Toliver... be strong".  We will all take your words to heart, Forrest.  This too shall pass, and we have to be strong to keep up with you!

Sleep well Darlin. We are one day closer to coming home. 

Love & Peace,

Monday, March 16, 2015

What do you do....

When you don't get what you want? Sometimes I pout for a moment. I call Kent... I call one of my sisters. Then I take a deep breathe...or several...and carefully count all of our blessings.  

The CT Scan and 3D virtual reconstruction of Forrest's beleaguered, but beloved, Noggin reveals a masterpiece of surgical innovation. And Forrest's speech, initiation, humor and processing speed are all advancing almost daily.  

But...why does there always seem to be a "But"?  But, the graft from his back which is partially covering and protecting this masterpiece appears to be breaking down in one area. If it does it could expose the underlying bone grafts to skin comtaminants and infection....catastrophe. We cannot let that happen.  So Forrest is back on powerful intravenous antibiotics, the surgical teams are regrouping and Forrest will return to the OR Wednesday. They will excise the questionable skin tissue and place new drains.  Then we will wait watch and pray that this wonderful new Noggin remains free of infection and is given a chance to carry Forrest forward into the life he is meant to live....

A 3D CT scan of the Surgical Masterpiece that we must protect.  

We are blessed to be in one of the finest hospitals in the world.  The nurses and doctors here are fabulous, optimistic, compassionate and exquisitely meticulous. 

So after we counted our many blessings we broke Forrest out of 10 North, grabbed a Tollhouse Ice cream sandwich and bolted for the garden where we found a little patch of Spring Sunshine.  Just breathing in the fresh air, even if it's not the Virginia countryside we adore, was healing. 
Sometimes Ice cream and fresh air are the best medicines.

When we returned to his hospital room, Forrest curled up with Calvin & Hobbes and his devoted sidekick, Toliver, for a snuggle and a nap. 

Nap Time.

Wednesday we will fix this wrinkle and get back on course. There are more blessings to count and Springtime at BrightWood is calling. 

Sweet dreams Forrest and Toliver,

Still Waiting

While we're waiting for results from his lab work and  the CAT scan we wanted to thank you all for your  prayers, warm wishes, and encouraging comments. 

On the way to the CAT scan this morning Toliver opened most of the doors and many hearts and minds along the way!

He delivered smiles and laughter to the CAT scan technicians, while he secretly checked all of the settings to make sure we will get a great result! 

Wishing you all love, laughter, faith and friendship.  

Team 44

Sunday, March 15, 2015

A bit of a Scare Today

What a day. First thing in the morning the surgeons pulled the drain from under your scalp and changed the bandage. Ouch! And we got a look at their handiwork. The contours of the new bone graft give your head a strong healthy shape again.  

Then we had to say goodbye to Austin as he heads off to Duke. It was so awesome having your amazing big brother lighten our load and brighten our spirits all week. What a Spring Break,eh?

Then this evening Pops noticed drainage from under your bandage. The doctors on call were paged but they were all tied up in surgery.  Pictures and phone consults flew around. The OR was reserved, as they thought they would likely need to operate again. Remembering previous post-op breakdowns and three failed prosthesis, we were all struggling to keep our game faces on. 

Then Dr Kumar himself appeared! He said after seeing the pictures of the incision he wouldn't be able to sleep tonight if he didn't see you for himself.   We held our breath as he removed the bandages and examined your surgical site. He was smiling, clearly relieved and  exclaimed, "I feel 1000 times better after seeing this for myself.  You know, Forrest,  I have a little piece of my soul tied up in you and your future!"  If Dr Kumar feels 1000 times better, then we feel 10,000 times better!

Dr Kumar will keep the OR reserved  "just in case" the CAT scan reveals further concerns, but he is hopeful it won't be necessary.   

So we may be going back to OR or we may be coming home.... Either way, we are grateful for this day, this moment, our time together, your prayers, and the hope of a new future for Forrest. 

As Forrest was singing at 1 o'clock this morning, entertaining himself and Tami, "this is the moment... this is the day, when I send all my doubts and demons on their way!" Tami will be with you bedside again tonight.  Try to get some sleep after all your singing is done! 

Farewell Thumb wrestle with Austin. 

"1000 Times Better"

Love Peace and Faith,

Friday, March 13, 2015

Continued Progress!

The surgeons don't want to disturb your bandage so we haven't seen their handiwork yet, but all indications are that this new noggin suits you perfectly.  We think this might have been your 18th surgery and you have never bounced back so quickly before.  

Today with the physical therapist, Austin and Toliver at your side you walked the entire length of the hall....TWICE....smiling the whole way! 

Here's a video Sharon Hallman recorded of your first post-op walk!

 And then you worked on your balance with Toliver's encouragement and a gentle game of tug of war.

You're keeping all your medicine down and starting to eat again.   Austin will keep watch by your side overnight.  And you and your dad are planning to watch Nick Weeden's lacrosse game at Brown on the computer tomorrow.  We're hoping for more Skype and FaceTime visits over the weekend.   If your CT scan is good on Monday and you keep making this great progress surely Team Forrest will be home mid week!! 

Love and Peace,

PS:  Dr. Kumar (the Attending Surgeon) just came by and was SO pleased to see how well Forrest is doing and how witty he was. Dr. Kumar said seeing Forrest's progress made his day, after a particularly rough day of surgeries.

Thursday, March 12, 2015

2 days post op!

Forrest is doing great! He was out of bed in a chair for several hours today, ate a little bit of solid food, and had some terrific, uplifting visits from friends. Forrest had his comedic humor in full swing today. He continues to heal and has come off of background levels of pain meds. Now he's only using them when he needs them. The attending physicians are pleased with his progress, and will continue to watch him closely. The goal is for a CT scan on Monday to evaluate the ventricles, bone, and other results from the operation. The JH librarian came by and gave Forrest a Calvin and Hobbes comic book someone had donated, that she had come across and remembered he liked Calvin and Hobbes from his previous stays. Tomorrow we may even play a little Xbox!

-Austin and Team 44

Wednesday, March 11, 2015

Less than 24 hours in ICU!

Your first word this morning rang out loud and clear, "Toliver"! And in an instant he was by your side, clearly as relieved as we all were to hear your voice!

Dr Kumar was pleased to see you looking so bright this morning after nine hours in the OR yesterday.  He explained how he was able to harvest enough bone from the back of your skull to rebuild the majority of the missing skull in front using 146 tiny custom titanium screws and plates to put it all back together.  He plans to keep you here at Johns Hopkins for 7 to 10 days to monitor you closely for any signs of infection, which is the next hurdle to overcome. But already you are strong enough to be released from ICU and move to 10 N. Several of the wonderful nurses here remember you from earlier visits and were eager to see how well you're doing and to say hello to Toliver. 

We are counting our blessings today and are so grateful for family, friends, amazing doctors, nurses, therapists, coaches, mentors, teachers, and your many faithful prayer warriors. 

We are praying now that you continue to heal, avoid infections or complications, the bone grafts all take and that, although there may be minor surgeries in your future, this is the last big one! 

Pops overseeing your respiratory therapy 

Checking out your latest "bonnet".
You are styling for sure 44!

All our best,
Team Forrest

Tuesday, March 10, 2015

Surgery Update - 9:20pm

Thanks for all the love, prayers, and support today! It was a long surgery, but Forrest is hanging in there and recovering in ICU. The surgery team was pleased with how the procedure went and with Forrest's strength. We already got a thumbs up, toe wiggle, shoulder shrug, shaka sign, fist bump, and ALMOST a smile. Dawn is keeping an eye on him in ICU tonight while he rests up. It's still early in the recovery but things are looking up. Hopefully the lights, beeps, and alarms will slow down for a few hours tonight so he can get some zzzzz's in.

Thanks for the comments too! We've been reading some to him and will read all of them to him tomorrow.
-Austin and Team 44

Awhhh ...the softest ears ever...

Surgery Update - 4:50pm

We just spoke with Dr. Jackson, Forrest's neurosurgeon.  He is pleased with how the major steps of the surgery went.  Dr. Kumar and team are finishing up now and will hopefully be done in about an hour.  Forrest is doing well.  Thanks for all of the messages and prayers.

-Team 44

Surgery Update 3:40 pm

We have been told "it's going well " but no doctors or details yet.  Toliver has done his best to cheer up other waiting families.  But as the hours drag by, he's clearly worried and keeps watching the door for his own boy to come back.  
He will, Tollie. He will.  

Surgery Update 10:30 am

Forrest enjoyed reading your messages as we waited together early this morning in the pre-op area. Toliver was busy handing out love and kisses to the younger children.  We met with each of the three surgeons and the anesthesiologists  involved today. Forrest of course charmed all the nurses and reassured us.  Dr Kumar agreed that the previous surgeries and Forrest's hard work  has "optimized" his conditions and the team here is optimistic about today's outcome.  

The anesthesiologist pulled up Bob Marley on his phone and Bob began  singing "every little things going to be all right".  You smile your crooked confident smile and squeeze my hand. As I describe our upcoming celebratory tour to Hawaii, they slip the nitrous mask over your handsome face and you drift off to sleep still smiling.  I hope you are dreaming now of warm sand beaches, swimming with Nahele, sipping lava flows, and sneaking off with Austin to the tide pools to feed the eels.  Sweet dreams Darlin. We will surround you in prayer and love until we see you next.   

Monday, March 9, 2015

Pre-Surgery Update

The surgery that was postponed in January is now taking place tomorrow morning at 7:30.  A team of surgeons will be harvesting native bone from Forrest's skull to rebuild his "noggin".  The surgery is expected to last between seven to ten hours, depending on if the surgeons elect to complete the entire reconstruction tomorrow or divide it and complete the second part at a later date.    

Forrest is strong and loved and is surrounded by the well wishes and support of many!  He was so blessed to spend the past few weeks with his friends from A Place to Be and The Same Sky Project.  Their belief in Forrest has warmed our hearts and brightened many of our days. 

As we spend one last evening together before entering the doors of Johns Hopkins tomorrow, we are thankful for Forrest's unsinkable determination and his ever present humor.  When asked how he felt about the surgery tomorrow, he replied, "It has to happen, so let's just get on with it!"  He is ready to tackle this step in his journey with his incredible bravery and spirit.  

Tonight, as he does so often, Forrest unknowingly uplifted and encouraged us when he stretched his 6'3" frame out on a small couch, patted Austin's arm and sang out "Don't worry, be haaaaaappy"!  

We will update you tomorrow.  Thank you for the continued thoughts and prayers.  

-Team 44

Snuggle time with the Broski, Toliver and Olivia's pillow!

Friday, March 6, 2015

Same Sky Tonight Cancelled but the Love Continues

Unfortunately since Loudoun County schools are closed today tonight's performance of the Same Sky is also canceled. We are all terribly disappointed. But taking a lesson from Same Sky, we will focus on the positives... especially their great performances and the amazing interaction that took place between the cast and the audience after each performance.

After the last performance at Mercer middle school a student from the audience asked you Forrest, what's been the hardest thing for you to deal with in the last year.  With a growing sense of self awareness and insight you replied, "Well, there are some things that I can't do right now that other 22-year-olds can, and that is hard.  But I am learning to focus on the things that I can do." And of course you punctuated this revelation with your characteristic lopsided grin!

We are eternally grateful for the camaraderie, inspiration, empowerment, and compassion that A Place To Be and the Same Sky cast and crew provide for one another.  Our whole family has benefited from the experience and we will carry the Same Sky energy and optimism with us as we prepare for Forrest's next surgery and recovery. 

With love and gratitude for every day...

even Snow Days!!!