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