Thursday, September 15, 2011

Grief and Grieving.

Yesterday was supposed to be a happy day.

Yesterday was supposed to be full of happiness and joy as our little boy finished his last radiation treatment and got to ring the bell at the Proton Beam Center.

For the most part yesterday was just that.

But as the day went on I got more and more uneasy and just generally not happy.

It culminated in an ugly grieving spell as I was getting ready to go to sleep last night. Ryan and I had just gotten home from our small group and headed to bed. My ear had been hurting and earlier in the day Ry told me to just put a little peroxide in my ear. Flash back to bed time. I asked Ryan where the Peroxide was. His simple reply "I think its under the sink."

It was those 6 simple words that threw me into to "grief mode." I thought to myself  ::I don't know why::: we are never going to have to childproof the house because my "toddler" will not toddle around and get into things like cabinets, closets and drawers. This escalated to Oh MY GOODNESS my son is NEVER going to run around a playground and hop from the swing set to the slide. The tears started rolling and they were unstoppable.

I sobbed silently into my pillow about all this things my precious little boy that has fought sooooo hard against a horrible disease will never be able to experience. Today I have been thinking of that episode and why last night, was it that simple question that made me trip into this black hole?

I have been saying to the doctors, nurses, friends, and family "as long as my baby is here I don't care about the legs, he can still have a full, happy, productive life." Their reply is always along the lines of "of coarse he can and he will!"

Was that statement a front to make myself feel better? I don't know, I know I do genuinely believe that but why all of a sudden does the loss bother me so-is the depth of the paralyzation just hitting me? Is it the weening of the meds (my anti-depressant and anti-anxiety)? Is it getting ready to "be my time of the month?"  Is it normal? I don't know, but what I do know is that I am hurting from deep in my soul.

I think of ALL things he will never be able to do like ride a bike, roller skate, play hide and seek, pump a swing higher and higher until he touches the sky....

Its crushing and I feel like I can't breath.

Thursday, September 8, 2011


Today was one of those days that I just wish had turned out differently. From the get go it was not great. To start off we were scheduled at the Proton Center for an 8 o'clock session. Well, eight turned to eight thirty which turned to nine which finally turned to nine ten when Jeff came out to get us. Meanwhile, the whole time we were waiting Keegan was crying. See I think his internal clock is broken or malfunctioning. the last two days he has gotten up at 5:30 and 5:15 respectively which on "home time" is 4:30 and 4:15 for no apparent reason. So while we were waiting for our turn he was crying relentlessly; snot bubbles and all. I couldn't have been any happier to see Jeff's face and be taken back. My son was tired and hungry and couldn't understand why we were walking around the waiting room aimlessly.

After he was out and in recovery they couldn't find Dr. B for our weekly Doctor checkup. I was getting EXTREMELY Frustrated because I wanted to get done at clinic so we could get on the road to Indy so we could get back at a decent time. Ugh but anyway, Dr. B finally came in, he checked Keegs over from head to toe, literally and told us he would basically see us on the flip side, he is headed to the ATL next week for a conference and won't be in town for his last session. He only has 4 more to go-WAHOOOOOO!

I knew that the rest of the day would be long, if this was how the day was gonna start I could only imagine. On the way to Indy from Btown I stopped at Starbucks and got myself a Venti Pumpkin Spice Latte-it completed me and I felt soooo much better! We got to Riley at a decent time and no sooner than I poured Keegans Nutren into his bottle than Larissa called us back to the weigh station. As we were getting weighed (29.5 lbs), BP checked as well as temperature, Crissy, Robin and Sally came in cause they heard us and wanted to say hi. It was a big reunion in a small room!

Sally brought us down to wonderful room #9, I have received more bad news in this particular room than any other rooms in the its very cold so needless to say=not my favorite room. She drew his blood, his ANC is well over 2200 which is fabulous and she sent Dr. Shih in. This is where I think I was thinking worse thoughts that what was coming out of the doctors mouth BUT in my defense I am trying to ween myself off some of my drugs (antidepressant & Anti anxiety mostly). So if it seems a little skewed you know why.

He came in looked at Keegan and we immediately began talking about "the future". In the cancer patients world the "future" consists from scan time to scan time. You can think outside that box, its weird you find yourself living from scan to scan praying and hoping with all your might you can make it to this date/occasion without anything major and so on.

Dr. Shih jumped right to that dreaded date, October 13th (its a Thursday for those of you concerned-I already checked).  So MRI on October 13th, they can begin to tell how effective the radiation was and so on. Scanxiety has already set in. We then talked about the Metronomic Chemotherapy that Keegan will be on. It is a combination of 5 chemo drugs, given at home orally. Dr. Shih said some kids have seen great results with this certain protocol (Kieran Protocol) but since Keegan is in a "bracket"-if you will-all by himself we really don't know what we are doing. He is maxed out for his lifetime on high dose IV chemotherapy and radiation (you can let your heart sink a little...I did). So unless they come up with a new drug in case he relapses yet again we are SOL (for lack of a better term). We just hope and pray for no relapse.

Dr. Shih said at this point he gives him a 50/50. I am going to be positive and pray we are the 50 that survive. We have to, God would not have put this child through all this if it wasn't to life a long, healthy, productive life....right? That is what I am telling myself.

So D day is marked, from here we will hopefully move forward with metronomic chemo, inpatient rehab and getting this boy back into some sort of schedule....did I mention he will be 2 in like 2 weeks....where did the time go? Holy Cow!

To add a little salt to my wounds today, I filled out Keegan's disability paperwork and got an application from Dr. Shih for a permanent Handicapped placard from the license depressing.

Thursday, September 1, 2011

The Ant

Brenda was almost halfway to the top of the tremendous granite cliff. She was standing on a ledge where she was taking a breather during this, her first rock climb. As she rested there, the safety rope snapped against her eye and knocked out hercontact lens. 'Great', she thought. 'Here I am on a rock ledge, hundreds of feet from the bottom and hundreds of feet to the top of this cliff, and now my sight is blurry.'

She looked and looked, hoping that somehow it had landed on the ledge. But it just wasn't there.
She felt the panic rising in her, so she began praying. She prayed for calm, and she prayed that she may find her contact lens.

When she got to the top, a friend examined her eye and her clothing for the lens, but it was not to be found. Although she was calm now that she was at the top, she was saddened because she could not clearly see across the range of mountains. She thought of the bible verse 'The eyes of the Lord run to and fro throughout the whole earth.'

She thought, 'Lord, You can see all these mountains. You know every stone and leaf, and You know exactly where my contact lens is. Please help me.'

Later, when they had hiked down the trail to the bottom of the cliff they met another party of climbers just starting up the face of the cliff. One of them shouted out, 'Hey, you guys! Anybody lose a contact lens?'
Well, that would be startling enough, but you know why the climber saw it? An ant was moving slowly across a twig on the face of the rock, carrying it!

The story doesn't end there. Brenda's father is a cartoonist. When she told him the incredible story of the ant, the prayer, and the contact lens, he drew a cartoon of an ant lugging that contact lens with the caption, 'Lord, I don't know why You want me to carry this thing. I can't eat it, and it's awfully heavy. But if this is what You want me to do, I'll carry it for You.'

I think it would do all of us some good to say, 'God, I don't know why You want me to carry this load. I can see no good in it and it's awfully heavy. But, if You want me to carry it, I will.'
God doesn't call the qualified, He qualifies the called.

Yes, I do love GOD. He is my source of existence and my Savior. He keeps me functioning each and every day Without Him, I am nothing, but with Him... I can do all things through Christ which strengthens me. (Phil. 4:13)

**My sister in law sent this to me via email and I thought it was just neat to share.