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Little Griffin - Update. Be prepared for tears

Wednesday, April 01, 2015

I am just reposting a blog by his mom, asking for prayers. This is not my child, nor grandchild, but he is a child of God and needs our love and prayers even if he never knows how many there are out there for him. Thanks so much.

With all my heart

By jill dahmen — Mar 25, 2015 10:07pm
Griffin is such an interesting child. As a baby he was a piece of cake...well actually more like an ENTIRE cake (he was deliciously chunky!). Then he became a toddler that I daily vowed to find a new daycare home for....and I AM the daycare provider. I "joked" that if he wasn't my own child I would have to terminate his care. He was "spirited", to put it kindly! {wink} And then he passed through those few excruciating years and transformed into this little butterball of a lover! He loved Jesus at an early age. Kurt and I would sit in amazement at how this little person could pour his heart out in prayer. It was beautiful! He also morphed into a small version of Kurt. He became very affectionate and when he said "I love you", it wasn't out of habit but rather it was because he FELT it! He coined the phrase "with all my heart"....."I love you...with ALL MY HEART". I remember thinking the 1st time he said that, 'how in the world did he think of that?'.

Last night, after our very difficult day, over the baby monitor at about 2 in the morning, we heard him rustling around to get his mouth real close to the speaker and he says...nice and loud "Dad. Dad?! I love you Dad. Love you with all my heart....". Oh jeepers, ya want to try to imagine the heart swell upon hearing that?!

Griff had a very hard day. He felt absolutely crummy ALL day long. He put a total of probably 5 bites of food in his mouth all day, and a handful of drinks. We sat for 60+minutes cheering him on to take a medicine. Now although that sounds insane and yes, it was tiring. It was a WIN as there was no yelling or screaming. No hurtful words. It was 60+minutes of CONTINUOUSLY speaking God's truth over him, hardly taking a breath. We absolutely refused to let the enemies lies be louder than God's truth. It ended up that we needed to force the meds down, like you give them to an infant. You can just feel his body relax when this happens, it almost seems like a relief to him that someone else is just doing it. Its a tough one to figure out. How do you figure this out? This whole thing snuck up on us with no time to prepare for it. So we are learning as we go along.

We had another win. The Neupogen boost...YES! Doing it in his sleep worked again! Praise GOD!!!

We are so hopeful that Griff feels improvement tomorrow. He had absolutely ZERO energy. Broke out a new color book and new markers that someone gifted him...he couldn't do it! Xbox game for distraction...he couldn't do that either! He just couldn't do anything. We saw the slightest bit of a smile 2 or 3 times, but that was it. Sad.

Today with sweet, innocent little tears streaming silently down his cheeks, he asked Kurt and myself what would happen if he "didn't make it". I can't describe how WRONG that feels to hear out of your Childs mouth. You have no choice but to put on a brave face and speak with certainty and confidence. Then go around the corner and proceed to bawl your eyes out. So wrong.

Tomorrow is a big day at the hospital, its Super Hero day and its a REAL serious event! We are hopeful that he feels well enough to go. He has his costume ready to go...stay tuned for that cute picture!

We are so incredibly grateful for our prayer warriors... Thank you for loving our son and our other children as well!

No fear!

..that this night never comes again

By jill dahmen — 13 hours ago
Griffin had an outpatient chemo this morning. It is his only one of the week. He actually strongly dislikes outpatient chemo because he has to deal with both an access AND a de-access all in the same day. His access was better than it had been. It only took about 15 minutes to do and he wasn't mean today, which was our that was good. The de-accessing, as silly as it seems, is really hard was the 2nd time that we had to leave the room and let them do their thing. Heartbreaking. We just keep praying that he will come around and not be so afraid of these things.
His counts weren't terrible, but they weren't terrific, they do expect, based on what they were today & where we are in his cycle, that towards Thurs and Friday we could be looking at a blood transfusion. We are praying for the blood platelets to increase!
Because white blood cell counts were decent today, he will attempt school tomorrow!
I am exhausted as I type this tonight. Today is Monday, which means he gets an antibiotic called "Bactrim"...this is to fend off pneumonia. He needs to take it twice a day on Mondays and Tuesdays. We dread this day. He hates his antibiotic! And so we battled. Twice. Actually, no, three times. He gets himself so worked up with fear of vomiting that he actually makes himself vomit immediately after taking it. Now, we do know that he can control it to some degree. He doesn't throw up every time, but tonight...he did. He sits and dwells on it for so long, he basically convinces himself that it's gonna happen. This was after a very long battle already and it only made us need to battle again, for a 3rd dose, because clearly none of it stayed down. It was ugly. I can't even share details because I don't want to put that visual in your head. Basically, we felt like monsters tonight. He acted like we were torturing him. My heart breaks and I feel frustration with him all at the same time. I know that must sound horrible that I am frustrated with my 7 year old son who is fighting cancer but I'm just being honest. I am furious at this dang cancer! I sit here with a painful lump in my throat typing this, knowing that if I start crying I won't be able to stop.
My heart hurts for my girls.
After this was all over I stood at the bathroom sink and just cried. So many good days in a row and then BAM...over stinkin' medicine?!?! Go away cancer!!!
I turned around to see my sweet little Reese not knowing what to do. She was literally walking in circles, silently. We need for God to protect their hearts and their minds. I am so sad for them.
As I was tucking her into bed, after Kurt had already prayed over them, she spontaneously started praying out loud about "being nice, not yelling, self control, being respectful etc" and then she said "dear Jesus...I pray that this night never comes again". I kissed her goodnight, told her that was perfect and walked out. Walked out quickly so that she wouldn't see me burst into tears. Dear Jesus, I pray that this night doesn't ever come again too.

We have another concern with Griffin. He has lost a lot of weight! He has lost at least 11% of his body weight since we started chemo. 10% loss is where they start to really get concerned. We asked for a little bit more time before they try alternative methods to help him gain weight or stimulate his appetite. So we are asking for prayer...we need to figure out how to get this boy to eat! We need high calorie foods because he eats so little. So please pray for some creative ideas to come our way!
Here's to less of a battle tomorrow over this darn Bactrim and some increase in appetite!

NO fear.
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Member Comments About This Blog Post
  • JAMER123
    Please share with this family our prayers. It's a very difficult and sad situation. I hurt for them s well. God's blessings.
    emoticon emoticon
    1479 days ago
    Praying. I don't know what you said to Griffin's question, but I can tell you that when you die and you believe in Jesus, you are taken up to Jesus and it is wonderful. You can literally feel His love! (I have been honored to have 3 near-death experiences.)
    1480 days ago
    1480 days ago
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