A Post From Pete: Heroes

It was 4 years ago today - February 24th, 2009 - that a radiologist at MUSC informed us that there was a tumor the size of a ping pong ball in the back of our 7-year-old's brain.  Since today is the 4th anniversary of that event, I feel like the time is right to say a few things to a few people that I've wanted to say for a long time.

I actually started composing this message 3 years ago, but completing it has taken a lot longer than I expected.  It's been slow mainly because every time I think about that day, and every time I think about the people and the places and the events you see listed below, I start crying.  And that's only notable because I'm not usually a crier, not an emotionally driven guy at all.  But when you receive the news that your 7-year-old has a brain tumor, and that the tumor will have to be removed tomorrow, and that you'll have to submit your boy to 18 months of radiation and chemotherapy, crying is what you do.  And even though some time has passed since that day, it still makes me sad to think about it.

Fortunately for us, once the news broke about Forester's brain tumor, we were immediately surrounded by a marvelous collection of saints and servants who flooded our home and our family and our whole lives with countless expressions of God's grace and lovingkindness.  These good people were never properly thanked or acknowledged for all they did (and still do) for us, so here goes.  Take a look at what these incredible people did for us...

Charleston Baptist Church (West Ashley) - This is an amazing church.  When Forester's brain tumor appeared, the people of Charleston Baptist Church reached out to us and gave and gave and gave to us as if we were their own.  Matt Kinard and the Upward Basketball community, a garage sale to raise $ for our medical bills, meals from CBC members that we'd never even met before, and so on, and so on.  Amazing.  Amazing generosity.  Amazing people at this church.

Chris & Staci McLain - Bringing us meals, baby-sitting Micah, praying for Forester and anointing him with oil the day of his brain surgery, a fabulous 3 day respite in Puerto Rico...  This is just the beginning of the list.  In the past 4 years I've had a number of serious illnesses, including Myocarditis, Pneumonia, several bouts of Bronchitis, and a debilitating pinched nerve in my neck.  Chris McLain has tended to me and taken care of me so thoroughly and so selflessly that I feel like I owe him everything.  Occasionally I regret the fact that I didn't pursue medicine as a career and a calling, because I wish I could do for others what Chris McLain has done for me.

Chris Harle - This came as a surprise to me, but when you find yourself suddenly in a situation like this, it's impossible to overstate the value of a good pharmacist.  This guy constantly looked out for us and always went above and beyond the call of duty to make sure we had all the meds we needed for Forester's care.  If you live in the West Ashley area of Charleston, you should get to know this guy.  I'm convinced that Chris Harle is an angel in disguise masquerading as a pharmacist at BI-LO.

Damon Gibbs - At 0600 on the day of Forester's brain surgery there was a knock on the hospital room door, and when I opened it there stood Damon Lavelle Gibbs.  He had driven all night from Lexington, KY, just to be there with us.  Can you believe that?  I think that's called extravagant love, and I wish I was as good at it as Damon is.

Dr. Buddy Jenrette (MUSC) - A positive and encouraging voice at a time when it was desperately needed.

Dr. Jay Traynham (Plantation Pediatrics) - On the day of Forester's brain surgery, Jay Traynham sat with us in the waiting room at MUSC the whole day just to make sure we understood the updates we were receiving from the surgical team.

Dr. Mary Kral (MUSC) - A true advocate for Forester and a source of invaluable feedback as we continue to wrestle with Forester's learning deficits and special education needs.  Dr. Kral has been a Godsend.

Dr. Steven Glazier (MUSC) - Steven Glazier is the pediatric neurosurgeon who removed the brain tumor.  Can you imagine the awesome and terrifying responsibility of performing brain surgery on an 7-year-old?  This man does it every day.

Dr. Todd Vasko (Plantation Pediatrics) - On February 23rd, 2009, Todd Vasko was the guy who had the foresight to order the CT Scan that 5 minutes later revealed the brain tumor.  Thank God (literally) for Todd's instincts and experience.

Glenn Hubbard - Out of nowhere former Atlanta Braves second baseman and first base coach Glenn Hubbard appeared and helped us create memories at Turner Field in Atlanta that Forester will never forget.  I wish everybody could get to know Glenn Hubbard, because knowing him has made me a better person.

Jean Slater & the Sisters of Alpha Phi (Northwestern University, Class of 1967) - These ladies, my mom's college sorority sisters, sent a steady stream of packages and gifts to all 3 of our kids for a full year.  Incredible.

John & Lauren Fortney - Lauren watched Micah countless times while we were preoccupied at MUSC.  Countless times.  And thanks to John we had (and still have) immediate access to information about Forester's case.  John the Apostle wrote: "There came a man who was sent from God; his name was John."  For the rest of my life, every time I read these words I will think of John Fortney and wish that I could be more like him.

John & Molly Meekins - John & Molly organized a motorcycle ride fundraiser ("Ride For Forester") to raise $ for Forester's care.  Completely kind and charitable.  I love these people.

Kelly Dent & Michelle Cooper (MUSC Peds Hemoc) - These two nurses on the 6th floor of Rutledge Tower at MUSC cared for Forester tenderly and brilliantly for 18 months.  There will forever be a bond between Forester and Michelle Cooper.  She is an angel, the kind that come down directly from Heaven and change your life forever.

Kevin & Julie Giordano - Where do I begin?  The fact is, for 6 years we lived next door to a family of superheroes.  For years I thought I understood the concept of giving and servanthood, and then we moved in next door to Kevin & Julie.  It took 1 day for me to realize that when it comes to giving and serving and putting others first, I am just an imposter compared to these two beautiful people.

Kevin & Sheri Gerald - Kevin was the first person to call me and say, "Let's go for a ride together.  Talk to me, dude."  He is one of the most sincere, others-oriented people I've ever met.

Kristin Pirolli (Charleston Pediatric Rehabilitation) - A diamond in the rough.  Forester loves Kristin and wishes he could still spend time with her every week.  He will never forget her.

Nic Porter - Nic organized a running event ("Run Forester Run") on Seabrook Island to raise $ for Forester's care.  Thank you, Nic.  You have been so kind to us.

Our Parents - Simply put, you can't make it through events like this without the help and support of your parents.  Our parents brought us through it, and we love them.

Phil & Colleen Weston (Charleston Christian School) - Colleen was utterly selfless in helping us get Forester back on track at school.  Tutoring Forester in our home was uncharted territory for Colleen, but she handled it with grace and confidence.  As for Phil, how can you not love this man?  We sure do.

Rick & Amy Sargent - Rick brought meals for me and games for Forester to the hospital, and he was ever-present during the first few weeks after the news broke.

St. Andrew's Church (Mount Pleasant) - Dwight Huthwaite, Kristy Barry and the St. Andrew's worship team showered us with kindness and support and care, and they have continued to do so for the past 4 years.

The Nurses of MUSC Children's Hospital (Floor 7B) - You don't have too spend much time on the 7th floor of MUSC Children's Hospital before you realize that the real agents of grace and mercy and healing in the hospital setting are the nurses.

Todd & Karen Bitzer - I'll never forget going to the mailbox and finding an envelope with a check in it from Todd & Karen.  That check arrived at just the right time and kept us afloat.  We love the Bitzers and thank God for their friendship and generosity towards us.

All these people are our heroes.

Pete

Hi, my name is Mom.

I feel like I'm due for a blog post but thankfully I don't have any drama or changes to report regarding Forester. In fact, in the last month we've moved to a new part of town, the kids have started in a new school and everyone is doing fabulously. Praise God for that!

I thought I might share about my current challenge, and wonder if any of you mommies out there could relate.  I can't remember a time when I didn't want to be a wife and mother.  I used to play with baby dolls constantly, I started babysitting at 13 in my church nursery and didn't stop taking care of other peoples kids until I became pregnant with Forester. I've always loved children and couldn't wait to be a mom! And this job that I love has exceeded my expectations. But it has also come with some things that I didn't expect.  Being responsible for shaping and raising God-loving respectable people is a lot different than being a nanny.  As my babies are getting older I have found things have become more difficult for me. As the baby and toddler years are more physically challenging, the elementary and beyond is more mentally challenging. *insert stab about my mental state here*  And though I continue to love my job it's hard a crap as every parent will tell you. I expected that. What I didn't expect was to feel like I was losing myself along the way.  Parenthood is all consuming.  It never stops. You don't get to get off the ride for a while and get back on.  In some ways this is great - it's a fun and rewarding ride. But, can any other mom out there relate to the feeling that mommy-hood just swallowed you whole and the old you is still in there somewhere but...where? I think I miss myself!  I believe I'm a better me because I am a mom. But, I know I need to find a balance in there somewhere because I've been told that "before I know it, they'll be grown and out the door". If I've lost myself completely to mommy hood then I'm just setting myself up for a mid life crisis.  But here's the challenge:  how do we mommies make time to continue to nurture ourselves in the midst of the busiest most demanding time in our lives? And maybe the bigger challenge is how do with do this without feeling guilty for putting ourselves on the priority list?
Today I don't have answers. Anyone else asking these questions?

Growth Hormone Shots

Just a quick update to let you know we have in fact started growth hormone shots on a daily basis and Forester is doing really well with them. He has mentioned that he wishes he wouldn't have to do this for the next 10 years but when it comes time to do the actual shot he doesn't complain. Forester and I tend to butt heads a lot and he can be the source of much frustration for me. But, when I think of how well he handles all this medical stuff I am in awe of him and truly blessed by God that he is so cooperative. Thank you, Lord!
 In other big news we have moved! We put our house on the market at the beginning of June and had a contract within 2 weeks!  We have closed on that house and close on our new house in just a couple of days. So, by this weekend we will be living across town and be Mt. Pleasant residents. We spend a lot of time in Mt. Pleasant already because it's where our church is so we're looking forward to being closer but the main motivation for our move is to get our children in the best public schools possible. The schools in Mt. Pleasant are excellent and given Forester's special needs we want to provide the best of the best for our kids.  We are pleased and thankful to God that we were able to sell our house and find a new one before the school year starts.  It's been a little crazy but God has provided for us every step of the way! We would appreciate your prayers as the boys will once again be starting at a new school in just a couple of weeks and Slade will be starting preschool for the first time.
Thank you as always for caring about our family, praying for us and especially your prayers for our Forester.
Love,
Whitney

Scan Results

The scan is CLEAR!!!  Woo-hoo!!  Thank you so much for your prayers. I had a wonderful peace today and was confident we would see a clear scan today. What an answer to prayer that is! We go to brain tumor clinic on Friday and hopefully we will hear about the growth hormone shots then.

At all times God is good,

Whitney

Please Pray

I'm asking for some prayers today. Forester has another MRI this coming Monday, June 4th. If this scan is clear then Forester will finally move to only having to have a scan every 6 months instead of scans every 3 months. In the past the thought of only getting to check in on his brain every 6 months brought me great anxiety but now it will be a huge and joyous milestone in his journey. If all is clear then he will also begin daily growth hormone shots which he desperately needs. His growth hormone level is extremely low and the side effects of this are more than just not growing. So, although these little shots will not be fun we are hoping they start very soon after his scan.

I am also asking that you would pray for me. I have been pretty forthcoming in past posts about how the loss of Forester's hearing really caught me off guard. He has adjusted to the hearing loss just fine and honestly we hardly notice a difference. This is a huge praise and thank you so much for your prayers for him. But, for me it seems that I haven't really recovered from that blow. The best way I know how to describe it is trust. Earning someone's trust if you don't already have it takes time. It's earned. I think with each MRI I gradually began to trust that Forester will be okay and is going to continue to be okay. Well, I fear I have lost that trust after the surprise hearing loss episode. I'm not sure how to get it back. I guess it only comes with time. So, I have more anxiety about this scan, about Forester's future and medical issues than I used to. I feel like I'm back to "waiting for the other shoe to drop".  I guess time may be the only thing that gets me back to a healthy place but I know that our God is not bound by time and he can surely calm my fears and provide peace. 
So as you pray for our sweet son and a clear brain scan will you also pray that God will heal my heart and provide his peace - especially on Monday.

Thank you,
Whitney

MRI scan is CLEAR

Thank you so much for your constant prayers for us and especially yesterday. Forester was calm and easy going as usual. We had to wait as always and I had Slade in tow but she did a great job being patient. (that's a testimony to answered prayers right there.) After 3 years of this 3 month routine I don't tend to get nervous or anxious too often anymore. But, yesterday morning I woke up really nervous and felt like I could burst into tears at any moment. I'm sure it's because of all that has happened in the last month, including a really weird short headache Forester had one day after an ear procedure where he said "oh my gosh, I think my brain tumor just came back!"

 Um, Yeah.

After we arrived at the hospital, all of my anxieties melted away and I felt at peace the whole time we were there and for the rest of the day. If you know me personally you know this is the power of prayer and the work of the Holy Spirit! By evening we received a call from our "inside guy" saying the scan looked perfect. YAHOO!!! For you reading at home I'm sure it seems like "same ole same ole" every 3 months, but for us there are no words to describe how it feels to hear those words even if we're expecting them. So thank you for your prayers for Forester and thank you for praying for me as I really needed it today. Prayer works!!! :-)

Deepest thanks,
Whitney

MRI Today

It's that time again. 3 months has past and Forester has an MRI this morning at 11. It will be his standard brain scan plus a few additional images to see if a tumor (unrelated to his cancer) or other growth could be on his auditory nerve and causing the hearing loss. This is extremely rare and finding something wouldn't change his outcome. His scan will take longer, though. Will you please pray for Forester today and that we will once again get beautiful results of a perfect scan? I always get scanxiety so I guess I  could use some prayers, too.

Thank you,
Whitney

Cataracts: Not Just for the "Mature" Eyes

Last Wednesday Forester had his eyes checked by his Ophthalmologist to see about that cataract. Well, it turns out it's not just one cataract but two.  He has them in both eyes but they are the same type (PSC) and equal in growth. To better understand what a cataract is, the doctor explained it to me like this: Our lens are made up of many thin layers. One layer in Forester's lens is "frosted". Think of frosted glass. Right now it's so mild that they aren't visible to Forester and doesn't affect his vision. These cataracts could continue to grow & cloud his vision or it could stay just like it is for his entire lifetime and not interfere. There is no way to know as each patient is unique. We are going to pray for the latter! But, if the cataracts do worsen then a simple surgery would be performed on both of his eyes to replace his lens with artificial ones. This would restore his vision completely. I realized as I shared this good news with friends that our good news would be another parents' devastating news. Surgery on both eyes? But, a surgery that can totally reverse a problem is very good news to us! We live in a different world than most around us, I guess. But, I'm also reminded that there are parents all over the world who have lost a child today. To cancer, or disease, premature birth, starvation or a horrible accident. They would love to have a small problem like deafness in one ear and cataracts on the eyes.  I bet in the course of my day today I passed by someone who is living their life around the hole where their child used to be. This is not lost on me. Not ever. And though I may have moments where I'm sad, above all I know we are blessed and I am thankful. Thankful for good news and so very thankful to have Forester here.

" I will praise the LORD at all times.  I will constantly speak his praises."

Psalm 34:1 (NLT)

Whitney

God Gave Us Two Ears

First of all, I want to thank you for your kind comments, emails, facebook messages, tweets and texts this week.  It really means so much to have others gather around us, pray for us, and encourage us. If Forester only knew or could understand...

Our boy did amazingly well with all three of the liquid steroid procedures. It's not something anyone would volunteer for and he remained calm and compliant each time. Pete and I are so proud of him and his willingness to just take what comes at him. Today was his hearing test to see if the steroids worked.

They did not.

If anything, his hearing decreased a little bit.  

Yeah, I know.

I didn't have high hopes walking into today because I knew he still couldn't hear well but I still had hope for something. Even when I tried to protect myself, I still had hope.  I'm sad for him that this is the final result. I'm still sad about all the things I already said I was sad about. Meanwhile, Forester looked disappointed when he heard the news but a few moments later returned to his DS playing. He "seems" fine but I hope to really talk to him about it tomorrow and make sure he's ok.

What Next?
So, that's it as far as intervention to try and reduce or improve on what damage has been done. We were given a lot of tips about how to deal with his impairment. Mainly how it will affect him in the classroom and what proactive steps we need to take in that regard. Our doctor also explained why a Cochlear Implant would not work for Forester. The really short version is that Cochlear Implants do not produce the same sound that you and I hear. Therefore, if you have one functioning ear, the implant would be a competing sound as opposed to a complimentary one.
Forester is a good candidate for a bone anchored hearing aid, also known as a "Baha".
"A Bone-anchored hearing aid is a type of hearing aid based on bone conduction. It is primarily suited to people who have conductive hearing losses, unilateral hearing loss and people with mixed hearing losses who cannot otherwise wear 'in the ear' or 'behind the ear' hearing aids. Bone-anchored hearing aids use a surgically implanted abutment to transmit sound by direct conduction through bone to the inner ear, bypassing the external auditory canal and middle ear. A titanium prosthesis is surgically embedded into the skull with a small abutment exposed outside the skin. A sound processor sits on this abutment and transmits sound vibrations to the titanium implant. The implant vibrates the skull and inner ear, which stimulate the nerve fibers of the inner ear, allowing hearing." It would look like this:

or more graphically, like this:

For a boy like Forester who already has a significant scar down the back of his head and neck and wears his hair very short, this would be very visible and possibly a social issue.  Of course, Forester doesn't seem to be too self conscious at this point and we could let his hair grow longer (though it's pretty thin from radiation).  But, in very brief terms, though the Baha would bring the sounds he hears out of his right ear into his left ear it wouldn't make things perfect. Because this is major surgery and is a visible appendage, his doctor recommended that a decision for the Baha be made mainly by the patient and if he isn't old enough to make that decision to wait until he is old enough.

For now, I guess we'll see how Forester continues to adjust to the loss and if he begins to struggle then we will discuss the Baha. We go back in 6 weeks for a recheck to make sure he doesn't have anymore loss. 

Wednesday we head back to the hospital but this time to check the cataract that is forming on Forester's eye. Not the best timing. The poor guy could use a break. I'll post on Wednesday what we find out. He also has another MRI on February 27th, just a couple days after the 3 year anniversary of his diagnosis. Kind of strange to me to think that he's been getting MRI's every 3 months of the last 3 years.
I'm really thankful he's here (understatement of the century). I'm really thankful for MRI machines. I'm really thankful that God gave us two ears and that he still has one good one.
Please continue to pray for Forester.

 love,
 Whitney

Yes, he's cancer free but this still sucks.

I guess I was getting too comfortable. I guess I had really settled into normal because 2 weeks ago my world got rocked (again)  and I'm still trying to get my head around it.
 For those of you who aren't on Facebook or don't follow me on Twitter, I will bring you up to speed.  Forester has lost almost all of his hearing in his left ear. 
About 3 weeks ago Forester had some congestion, sneezing and runny nose. After a bout of sneezes and nose blowing he said he couldn't hear out of his left ear. We chalked it up to sinus congestion/pressure. After 2 days of him saying he still couldn't hear we took him to the pediatrician. I thought for sure either Forester was being dramatic or he had the beginning of an ear infection. His ears were clear but the doc gave him some Fluticasone to help clear the pressure, etc. After 7 days and no change we weren't terribly concerned until I saw Micah say something in Forester's left ear and then Forester turn his head around and asked him to say it again in his right ear.  Wait. That's not being dramatic.  We scheduled an audiologist appointment at MUSC for the following week. Oddly enough Forester's school requested a hearing & eye test with the nurse the next day. They called me in to share the results. He had failed the hearing test completely in his left ear. Heard nothing.  We called the audiologist at MUSC and they moved his appointment to the following morning. Slade and Forester and I went. I thought for sure he probably had something going on in his middle ear - something fixable. His hearing tests (which he gets every 6 months) usually take 10 minutes at the most.  When he didn't come back to the waiting room after 20 minutes I got nervous. When he still wasn't back after 40 minutes I was really, really nervous.  You may remember that Forester took a chemo drug called Cisplatin that can cause hearing loss. He did lose some hearing in the "dog whistle" high tones but it was minimal. He's had consistent hearing tests with no change for almost 2 years now. So...this just didn't make sense. It has to be an ear infection.
Long story longer, Forester completed his tests and the audiologist pulled me into a tiny little room to talk.  She said "well, it's not good news". (all too familiar people!) He has had dramatic hearing loss and it is permanent. She said a hearing aid wouldn't help him as the loss is too severe and bunch of other stuff  that I can't remember because Slade was screaming "MOMMMEEEE!" from the waiting room the whole time.  But, somehow I came away thinking this was related to Cisplatin.  We were immediately set up to see an ENT specialist within a couple of hours.  She said something about a possible treatment (huh? I thought you said permanent?), steriods, tests, shots... blah. I hated this day. It reminded me too much of Forester's diagnosis day. Pete wasn't with me...I called him crying...being whisked away to other doctors and tests...all of it. Yucky.
Moving on.
My parents met me at my house to watch Slade and Pete met Forester and me across town at the ENT. This doctor is much more positive. And he's tall. Very tall. He says this is not from Cisplatin. Cisplatin not only doesn't cause hearing loss in this way but definitely not two years later. The theory (also known as we don't know why this happens) is that a virus of some kind infected Forester's Cochlea or Cochlea nerve.  This is extremely rare but it happens and the end result is instant dramatic hearing loss that is likely permanent.  Really? I mean, really?? This craziness isn't related to cancer & treatment? What???
We were told that high doses of an anti-viral drug along with high doses of steroid could give Forester a 50/50 chance of regaining some or all of the hearing loss. We've already dealt with rare. We've already dealt with a 50/50 chance. This sucks but at least you're saying there's a chance.  So, for the last 10 days Forester has been jacked up on huge amounts of these drugs. This morning he had a hearing retest to see if the drugs had reversed the hearing loss. Unfortunately, the result was minimal improvement. A little bit, but not much. The next and last step to try to regain his hearing began today.  The ENT poked a small hole in his eardrum (yeah, ouch.) and then applied liquid steroid directly to the Cochlea. Forester was very brave. Once again, this kid was a trooper during a procedure that most kids would have freaked over. I was very proud of him and very sad for him all at the same time.  He will have to do this again on Wednesday and again on Friday.  He will have another hearing test a week from today (Monday), and those results will be final and permanent.
I've gone through a lot of emotions this past week and today. Mostly sad. I've cried a lot today. Maybe I can blog more about how I feel at a later time but right now I'm just tired and weary and really sad. Sad to be here again...kind of.  No, it's not cancer. Yes, he's still cancer free!  But, right now he's lost the ability to hear out of one ear and that still sucks. This one thing alone would be devastating to any parent. Every parent wants their child to have  everything they're supposed to have. But on top of everything else?! Ugh. This mother's heart is hurting. Bad. I know he'll be okay even if he doesn't regain his hearing. I know he can still hear well out of his right ear and he doesn't seem extremely bothered by the loss. But, he's my baby. I don't want him to struggle anymore than he already has.

Please pray that miraculous things will happen this week and that Forester's hearing will be restored.  Thanks, warriors.

Whitney

Happy New Year

Hello family and sweet friends,

It's been about 4 months since my last post and wow, how time flies! Since that time each of our children have had birthdays (10, 7, 3), we celebrated Thanksgiving and Christmas, rung in the New Year, finished soccer and started basketball and are almost halfway through 4th grade and 1st grade at a new school. I think I need a nap just thinking about all of it!

Micah...
Micah has really settled in at his new school. He has made several new friends, loves his teacher and really seems to enjoy learning. He also seems more and more interested in sports with each passing day.  He loves Upward basketball and he can't wait to sign up for baseball for the first time this spring. Micah seems to have an internal motor that is always running so we're glad there is an outlet for him in sports!

Slade...
Slade is three. How can my baby girl be three? It's known to all that two's are terrible but I disagree. I think two is challenging and three is terrible. It's the year of choosing to disobey and testing the limits. Of course it's also full of wonder and discovery, love and snuggles! I wouldn't trade it for the world and Pete and I are up for the test. I think. We've haven't parented a diva before...

Forester: A kid's life post-cancer... 
Forester is doing well. He finished soccer better than he started and really loved playing goalie. He's also playing Upward basketball and is holding his own against some of the older and taller players and improving his skills. He still seems to end up on the ground more than most. I don't know if that's residual neuropathy in his legs, lack of strength, or just tripping over his own feet but he gets right back up and keeps going.
Another MRI was done in December with another perfect result. Thank you, Lord! A small cataract has begun to develop in his left eye. This is a side effect from radiation. He will see an Ophthalmologist in February and we hope to have a better understanding about the growth rate of this cataract and treatment. His thyroid levels are currently balanced well with the small amount of Synthroid he takes each day, and he is still on target to start daily growth hormone shots this summer.   We are starting to see more side effects from having a low growth hormone level. Obviously, in his height, but he also gets winded and tired more easily than others.  His hair is still baby fine and thin. He has less muscle tone than he used to and his metabolism is sluggish so he's carrying more fat. He is not overweight but we were encouraged to keep him as active as possible, limit snacks and make sure he's eating healthy. Sounds like a good idea for all of us! It is ironic though. His treatment  caused him to lose so much weight and the doctor's advice was to give him anything he wanted to eat at anytime. The more fattening, the better. We were calorie pushers and short order cooks! That same treatment has now caused his system to slow down and not metabolize properly so we're on the other end of the spectrum. But, I'm thankful for the needed discipline because we've allowed Forester to continue some bad eating habits that need to stop.  I need to stop catering to what he likes or says he doesn't like.  He can still be very picky about how something looks or smells and still has to take Prevacid everyday to keep his tummy from feeling bad. So...food can still be frustrating.
School has definitely been our biggest challenge over the last four months. Forester has been blessed with an amazing teacher who wants to help in anyway possible but it quickly became obvious to us that he needed more than just a supportive teacher.  Math has become more and more difficult, multiplication just doesn't seem to be sticking, he's beginning to have more attention deficit episodes where he "spaces out" and homework is taking twice as long to complete.  We met with Forester's child psychiatrist at MUSC and she confirmed that all of these things line up perfectly with the side effects of the treatment he received and the results of her testing.  She recommended that we pursue getting an IEP (individualized education program) put in place. This would give Forester access to special education help in math, taking tests, homework, etc,.  We are currently in the process of trying to make this happen but it's been tougher than we had expected. We have another meeting with the school board on Feb.1st. at 10:30am. Will you please pray that they will approve this IEP without opposition? We want  Forester to have every resource available to him so that he can perform to potential.
Thank you for caring for our family and for praying for us. We are praying (as always!) that 2012 will be cancer free for our family and filled with opportunities to share the love of Christ. We thank God of each of you and pray His blessings on you in abundance!

Whitney

But, he used to be...

 Hello, my friends! Forester had another MRI brain scan last month and the results look great with no evidence of disease.  My heart soars every time I hear those wonderful words. Thank you, God!

We were also able to get more clarification about Forester's thyroid and need for synthroid. His level is only slightly low and therefore the amount of synthroid is teeny tiny. It's not near enough to throw him off balance and just brings him up to the normal level.

Also, we have not started growth hormone shots. It turns out that Forester is not "allowed" to have growth hormone shots until he is a full two years out of treatment. His oncologists explained that we don't want these shots to stimulate anything that shouldn't be growing to start to grow. That makes sense and we surely don't want that either.  Pete and I have been angered and disappointed that an Endocrinologist at MUSC who supposedly deals with cancer kids frequently wouldn't know this timeline. If these decisions hadn't had to pass through Forester's oncology doctors we could have jeopardized his treatment. Scary.  I was also a little bit sad that we have to wait a year. I don't want Forester to have to take shots everyday but I also want him to be as normal as possible.  He'll be 3 years behind in growth. Thankfully, since he was a baby he's always been the biggest and tallest kid among others his age so right now he's evened out and looks like everyone else.

On to prayer requests for Forester....or maybe more for me.  The last month or so I have found an anger and sadness rising up in me. While in the midst of Forester's treatment all I really cared about was his survival. I would hear the list of possible problems and difficulties due to the side effects of chemo and radiation and I cried. But, in the grand scheme of things he would be alive and those things were minor in comparison. Well, now he is starting to live out those side effects and I'm really really sad. I'm mad about what's been stolen from him because of cancer.  Forester is back to playing soccer for the first time since he was 6 years old. This is a huge praise in itself since at one time we weren't sure if he would ever be able to run normally again. But, he used to be so naturally athletic.  The last time he played this game it was on a tiny field, 3 against 3. Now it's a big field with a bunch of 10 year olds with offense & defense positions.  He doesn't run as fast or kick with the same amount of ease. I can tell when he gets tired because his left leg can't keep up with his right. My heart tightens up every time his coach yells his name trying to direct him. Now, in complete fairness there are other kids on the team who are getting "verbal direction" too and aren't sure about what they're supposed to be doing either. There are other kids on the team that aren't athletically gifted.  I think I would be ok with that if that had been the case for Forester but it didn't used to be before cancer.  Would he have been a soccer star before? I don't think so. It's just that now he struggles where he didn't used to.
Another area where this is playing out is in school. Radiation to the brain causes learning delays and challenges. When your child has brain cancer and radiation is the best chance to get rid of it for good, having a tougher time in school is on the level of "not a big deal", he'll be alive. But, now that we're watching that play out I'm just mad. Learning/school had always come easily for him.  All subjects easily clicked. Straight A's, no sweat. Math used to be his favorite subject.  Math is now his most difficult subject and he hates it.  In all subjects things are just tougher. I can see how his brain has a hard time "getting it" and I know he's giving it his best effort.  And I'm just sad. I'm grieving the loss of what was or what could have been.  I have learning disabilities and I struggled in school. I don't want that for him! I know this is the beginning of many small losses I will grieve.  And though they are small it still hurts deeply. When Forester was in daily treatment I had a hard conversation with another mom about these types of things. We both concluded that treatment ends, cancer can be beaten but cancer never really goes away.

In the midst of my own sadness I am also thankful because Forester is not aware of any of these things. He doesn't know there is a difference on the soccer field or in school. He doesn't relate any of this stuff to cancer or treatment. He still has no idea the magnitude of what he's gone through or overcome. Ultimately, I know all of this is part of his story. I know God will use all of these things to mold him and shape him into an amazing man who can share the miraculous healing of Christ and the victory we can have in our struggles.  But, as a mom...no one wants to offer up their child to be the one who has to take the hard road.

Please continue to pray for our Forester, our family and my aching heart.

Thank you doesn't say enough,
Whitney

Endocrinologist Results

Last week Forester had an extensive Endocrinology appointment testing his thyroid function as well as his growth hormone levels.  This included getting IV drugs and several blood draws. Unfortunately it was a very rough day for Forester since his little veins weren't cooperating.  Once they would finally get an IV going his vein would collapse and they would have to try again in a different spot. The same thing would happen when they tried to draw blood. :(  After 5 sticks he was really missing his port!

Results
Though his thyroid numbers are still in the normal range now his doctor believes that hypothyroidism is inevitable and wants to go ahead and start him on Synthroid. I don't understand this at all. If his number isn't low yet then why would they want to start a med to raise the number? Wouldn't that throw him into hyperthyroidism? As you can see , I have questions and would like a 2nd opinion on that.
A normal growth hormone level for a boy Forester's age is between 7-10. Forester's is 1.8. In a couple of weeks we will begin administering daily growth hormone shots to Forester that will continue through his 18th year.  Not news we wanted to hear but we knew it was coming. Forester is still at the height of a 7 1/2 year old which is when he started his chemo treatment. He'll be 10 in early November.  He doesn't know about the shots yet and we won't tell him until the day before the nurse comes out to show us the ropes. We've been reassured by others who have gone through this that it is a very simple shot and just a pinch of pain. We look forward to watching him grow!

In other news, Forester and Micah start their first year in a big public school on Tuesday!  They are so excited and we are too. I think they will love 1st and 4th grade at Drayton Hall Elementary. We are praying for the very best teachers for them and new wonderful friends.

My sister and I still have our loser blog going.  There has been some BIG news as of late.  If you haven't checked the site, I highly recommend doing it now to find out what the BIG news is!! Click here: http://mysistersaloser.blogspot.com

New posts are up on http://mysistersaloser.blogspot.com! Make sure you enter your email address on that blog site if you want to follow our progress and get email alerts. :-) Thank you, friends!
~Whitney

New Blog

There is a new post on my new blog!  Have you checked out my new blog yet?   It's called "My Sister's A Loser". Follow the link to see what it's about.  http://mysistersaloser.blogspot.com

Whitney

So... it's finally here! Initially I thought this blog, "The Bradburns", was about to take a turn in another direction but over the past couple of weeks I've decided to launch a new blog. I am so excited about this and it's purpose and I need you to check it out! I will continue to update this blog as needed with posts about Forester and the kiddos -albeit not as regularly because we are officially in the stage of life after cancer. Woo-hooo!  PLEASE go HERE to check out my new blog site. GO NOW!  :-) :-)

Ummm....

Did I say next week? I mean to say Monday, July 11th! Ok, so I got a little distracted but I promise, Monday is the day! STAY TUNED for the changes that are coming!  :-)

Transition

 

It's been a long time since my last blog post. Four months actually. Since then Forester has had another brain MRI and he continues to be cancer free! We're transitioning into a new phase of post treatment care.  Forester continues to get hearing tests and blood work and physical therapy but he is now also meeting with an Endocrinologist. Due to radiation to his brain and spine it is expected that he will not grow as he should and his hormone levels may not function properly.  We have already seen a drop in his height percentage as he used to be in the 60th percentile and has dropped to the 30th. Growth hormone shots may be in his future but not yet.

We've also seen some struggles in school this past year also due to radiation therapy slowing down his brain's processing center. Some of the struggles are also due to missing an entire year of school & trying to make it up within four months. There are some learning gaps that we need to make up for. Overall, he ended 3rd grade with A's and B's and we are extremely proud of him.  He worked hard for it. Unfortunately, school is not as fun as it used to be and we had quite a few homework battles at home. As our children transition out of their small private Christian school into public school next year, we're praying for: 1) the right school - as we are still undecided on where we will be living (in Charleston) in the fall. 2) Compassionate and passionate teachers & staff who are willing to work with Forester's needs. 3) A renewed love for school for Forester and peace at home when working on it.  We would love your prayers as well! Thank you.

Since this blog has been mainly focused on Forester's cancer journey, the posts have waned because life has returned to normal around here. Praise God for no news! So, I think I'll begin to transition back to blogging about "life as we know it", my internal thoughts and struggles...you know, awesome cancer-free boring stuff! I'm actually thinking this blog is about to have a new purpose but... we'll talk about that next week.  Anyway, I tell you all of this to give you permission to unsubscribe without guilt if you don't want to continue to receive my blog updates. My feelings won't be hurt, I promise. Just send an email to: bradburnfamily@gmail.com with "Unsubscribe" in the title.  But, I hope most of you will stay with me on this journey. I'll need your help in the challenges that lie ahead. More about that next week....

Two years ago today...

Can you believe it? Two years. It was 2 years ago today that our little 7 year old firstborn was diagnosed with a malignant brain tumor and our lives changed forever.  I didn't think my heart would survive to make it to this day much less consider it a day of celebration! But it is! Praise God, Forester James Bradburn is on the other side of his battle with cancer and is CANCER FREE! Once again I am reminded of God's goodness to us in the midst of the most devastating time in our lives. Not only did he pour out his peace upon us but he raised up the body of Christ from all over the world (literally) to pray for our child and be the hands and feet of Jesus. I am humbled and in awe at the thought of it. We are just a speck in the sea of people on this earth, but we are special to God and cared for by him! And so are you! Isn't that truly amazing?
Once again we thank you for praying for us, loving us and walking beside us. Today is a day to celebrate LIFE. Glory to God!

*if you're viewing this by email I uploaded a picture collage to the blog. Check it out! http://thebradburns.blogspot.com  :-)

Update on Ansley

Ansley is doing great!!  If you haven't checked her blog, you can scroll down our blog and a link to hers is listed on the right. Please continue to pray for this precious family. 

Thanks to Ansley's family and all that they are going through, I am once again reminded what Christmas is all about. It's about LIFE. The gift of life that God graciously gave to us through his son, Jesus Christ. We take life for granted! As Christmas Day quickly approaches, I am trying to remember that all the presents and food, parties and decorations, & desperate attempts at making memories for the kids, are gifts in itself.  These days are precious.  These moments are precious. I am so thankful for our healthy family of five. So, I hope that you, too, will enjoy this week. Be in the moment with your family. Get on the floor with your kids, play games and color, drive around a look at lights, sing Christmas songs, give hugs freely and say I love you.

Today is a gift!


Merry Christmas and many blessings,
Whitney