Sunday, September 25, 2011

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 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,


Miranda said...

girl, I can't imagine the daily tugs and rips at your heart while you continue to walk this journey. Thanks for sharing w/ us. Praying for all of you, for normal. I love your mama's heart.

Tammy H said...

I am asking God, in the same way he healed Forester of cancer, to even heal him of the after effects/ side effects of the same. For real. I feel for you. I am focusing my attention on Arumai's health, keeping the disease at bay. But then, I get so angry about the side effects of the meds/treatment/disease. Loss of baby fat, reduced motor/dexterity, 90% chance of cognitive loss of abilities later in school. While we are super thankful our kids are alive and well, we feel guilty (or at least I do) about being frustrated about all this OTHER STUFF. Anyway, I am speaking to both of us, this STUFF sucks big time. Praying for grace and for continued healing. God cares about baby fat, cognitive skills, learning issues, and athletic abilities. Love you!! You're an awesome mom!

Thesupermanns said...

oh what a hard, hard thing Whitney! Your mama heart is right to ache and i know GOD knows those aches. thank you for sharing. there is a hymn we sing in church ( forgot which one). One of the verses sings "He can repay from His fullness all He takes away". I pray that He would restore the years that the locusts have eaten..and let you have glimpse of it even if it looks different than expected.

David Haas said...

I have a question about your blog. Please email me!