Tuesday, September 18, 2012

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?

Wednesday, August 8, 2012

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.

Monday, June 4, 2012

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,


Tuesday, May 29, 2012

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,

Tuesday, February 28, 2012

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,

Monday, February 27, 2012

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,

Tuesday, February 21, 2012

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)

Monday, February 13, 2012

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:

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.


Monday, February 6, 2012

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.


Friday, January 20, 2012

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 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 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!