Tuesday, July 21, 2009


Even when I must walk through the darkest valley, I fear no danger, for you are with me... (Psalm 23:4, NETBible)

It's Sunday night. The kids are excitedly planning what they'd like to do with the next 7 Summer days. We have to disappoint their plans for Monday by announcing that we have hematology clinic at Children's Hospital at 10. Running low on time and cash, I fail to call a sitter, so both little ones will have to make the trip.

Anxiety rises. "Do we have to go?", he pleads. He's scared. Even so, we get them settled in for the night.

Morning comes and the hurried pace begins. Do we have all his medical supplies packed for treatment? Do I have snacks and drinks packed for everyone to satisfied during the overly long appointment? Are the kids cleaned and dressed on time? Have they packed toys to help the time pass? Do I have everything? As usual, I'm running late.

Whew! We're here. There's a long line to check in at the hematology and oncology clinic today. We're ushered into our exam room, no bigger than 10 feet by 10 feet, where we'll reside for the next 3 1/2 hours while the parade of professionals streams through.

First, comes the social worker, asking the survey questions then addressing all the psycho-social issues we're dealing with. We're advised to start teaching our 9 year old to only aim towards career choices that provide good, big-company insurance benefits and safe activities. No future as a police officer or small business owner for him!

Next, comes the financial counselor. Is our health insurance the same? Is Medicaid still our secondary insurance? What about the financial assistance program that dropped us because we'd reached our maximum number of allowed years of participation? Are there any other assistance programs for us, the working poor, or do we have to be jobless? The kids are getting restless now, wrestling in this little space.

Our medication provider is next. There are no concerns or issues there, so we turn to personal conversation. These people become like family when they're such a regular, important part of your life.

The physical therapist is next. Examining range of motion for every joint, every muscle takes quite awhile. He has found a sprained shoulder that our son hid from us. It seems he'll be okay. Our youngest is now crawling the walls. Dad takes her for a walk. The therapist tries to impress upon our boy the need to get back to regular low-impact exercise like swimming and biking, in order to build strength and prevent internal bleeding.

Ah, the hematologist is finally here! She has an inquisitive student with her, who thinks the disruptive behavior of our youngest is hilarious. Since we can't hear the doctor, another tour of the floor takes place with Dad and the energetic tag-along. A reasonably good exam results. Can we get out of here now?

No such luck! The nurse coordinator still needs to see us. She introduces us to the professional who will fill in for her during her imminent maternity leave. She runs through her litany of questions, followed by discussions of training our local school and hospital staff.

The worst part is saved for the last. We're all escorted down to the research lab. After much coaching, compromising and comforting, he refuses to cooperate with putting the IV line in his arm. Dad and a nurse need to physically restrain him as he sobs and cries out in terror. For the next 15 minutes he sweats and whimpers as vial after vial after vial of blood is drawn for tests and studies. He's getting light-headed and finally leans into Dad for relief. Once the blood is drawn, I infuse, all the while his restless little sister waiting at the door.

THIS is one of the darkest valleys we are required to face every 6 months. There's no escaping it -- We've been assigned this diagnosis for life. Facing all the angles of dealing with this disorders for 4 concentrated hours leaves you feeling like you've been spun around and turned on your head once you're finished. It's difficult to think in a logical, sequential order after an appointment like that. Tempers flare. A good meal and refreshing sleep can't come fast enough.

Even so, He is with us. We have nothing to fear. Though we're exhausted, we have HOPE. This is just one more step we need to get through to get on with the daily living. How do parents who don't have HIM do it?

1 comment:

  1. ((hugs)) to you Barabara. I'm sorry it was so rough on you, and on everybody. Thank you for sharing your experience in the honest YET encouraging way that you have!

    "w know that suffering produes perseverance; perseverance, character; and character hope, and hope does not disappoint us, because God has poured out His love into our hearts by the Holy Spirit, whom He has given us." (Romans 5:3b,5)..."We thank God for you, mentioning you in our prayers...Your endurance is inspired by hope in our Lord Jesus Christ".
    (I Thessalonians 1:2, 3b)