Stalked by the Stork...a diary of raising twelve kids

Having twelve children is an amazing blessing and one heck of a crazy ride. Join us through all the joys, smiles, tribulations and trials as we navigate this fabulous journey!

Sunday, September 4, 2011

Questions Without Answers

Drew's platelets are low again. And at just the wrong time. Our primary insurance expired on the 31st. That means we can't attend clinic at Dr. Bob and Dr. Rob's anymore, at least not until Albert picks up benefits with his new job and we can re-join them. In the mean time, we'll have to be followed at St. Louis Children's Hospital. And before I could set up an appointment at the Hem/Onc clinic, Drew's platelets dropped, necessitating a visit to the E.R. On a Sunday. Of a holiday weekend.

When we arrived here this morning, the nurses greeted us skeptically. Drew had only one bruise. How could we be certain he was low on platelets they asked? Well, because, Drew just knows. He can feel it. More than that, he can sense it. He's had this disease since he was 18 months old. His body just lets him know when he's low. He is otherwise fairly asymptomatic. Rarely does he exhibit the telltale signs of low platelets- never any bleeding, rarely any petecheie. Just a random bruise and that feeling.

The nurses took his blood and left the room, still suspicious and skeptical, but friendly. Forty-Five minutes later they returned bearing news of what we already knew- Drew was low on platelets at only 12,000. "He's 12" one nurse sighed, remarking that she was amazed at how in tuned to one's body one must be to sense something as outwardly silent a low platelet count in the absence of physical symptoms.

So that landed us on the Hematology/Oncology floor. Overnight. As we trudged up to our room, I remembered my last visit to this place. It was to see Dr. S., one of the few doctors here that I trust fully. We have a history with this hospital, and not a pleasant one. Drew used to be treated here as a toddler, before we found Dr. Rob and Dr. Bob. Our hematologist at the time was one we were not on the same page with and one who didn't seem to think that our views, as very young and inexperienced parents, were not something that she should consider. We did not agree with the treatment course at the time and she did not agree with our choices. When we left, I'm sure it was a relief for all involved. So coming back here has not been without apprehension.

But I digress. The last time we were on this unit was to take a tour of the bone marrow transplant unit, in preparation for the transplant it was beginning to look like Brandon was going to need (transplants in St. Louis are done here at Children's). Dr. S. who is the transplant coordinator, was going to start the paperwork to locate a match in the national registry. It had been a horrible, rotten day. And being back here felt weird.

I have gone to the cafeteria three times today which means I've been afforded ample opportunity to walk past the glass windows to patient rooms along this floor. I've seen too many children with masks covering their faces, doubtless a result of a low ANC from Chemo or bone marrow suppression or God knows what. Walking by seeing bald head after bald head is shocking and yet vaguely familiar. Drew and I have both complained about having to spend our Sunday here. But the reality is, we'll be free as of Monday morning. Sure, we'll have to return to clinic but in the grand scheme of things, the ailment that brings him in, his I.T.P, is a relatively benign condition as long as it's treated quickly and effectively. He'll walk from here tomorrow. My biggest worry is that the plastic pillows are woefully inadequate and my grandest fear is that I won't get much sleep because of it. Yet in many of the patient rooms that surround ours, other mothers are facing far more significant fears. Fears that I remember even though I desperately don't want to. Truthfully, I don't want to look. I don't want to think about the battles that are going on in those rooms and in the lives of those children and those families. But I do anyway. And I feel a wild tangle of emotions- guilt, gratitude, sadness, anger. I'm always paralyzed and crippled by the things that don't make sense in life- how is it chosen who's children get better and who's don't? Is it random? God's design? strictly biological? I've heard it said that God is always in control. I've heard it said that things like cancer and disease and illness are not the work of God? Well, I want to know, which is it? How did Brandon escape the perils of his disease when others...other children we know, did not? And that's perhaps the main reason I don't want to look, or venture out to the hallway another time, or pass another beautiful bald head in the elevator, or see another teen-ager with a mask. Because I'm taking my healthy son home tomorrow morning and my other healthy son in remission will be waiting for us on the porch. And I'm so grateful and happy about that, I could shout it from the roof-tops. And here, in this place it seems just the tiniest bit unfair. And I don't know how to process those emotions. Am I blessed? Without a doubt. But what about the kids who don't get better? Were they somehow less blessed? Of course not. Were we lucky? Certainly. But luck doesn't seem the right word either.
I imagine it would be a bit like walking through a famine stricken area, amongst starving people, starving children and having a pot roast in your hands, that only you can eat. And you'd gladly share it with every single person you see, but you don't have that power. All you can do is be thankful you've been fed.

As I returned today with Drew's lunch, I passed the sign that read "BMT". I stopped and looked at it for a moment. Then moved away from it. It felt good to walk away from it.

Happily, the doctors that we have seen here have been amazing. Excellent. So far, my fears about returning to this have been alleviated in that department. I saw a note attached to our door with the name of the doctor ultimately in charge of our care. Dr. S. I smiled when I saw that. We'll be okay here until Albert gets new insurance and we can return to our "home" clinic with Dr. Bob and Dr. Rob. Clinic with Dr. Bob and Dr. Rob is different. It's a happy place. It's not surrounded bone marrow transplant units and planted right smack dab in the center of the Hem/Onc unit of the hospital. It's something opposite of all that. It's like a hideaway, or a sanctuary. A happy, fun place where kids play and laugh and just so happen to be getting treated for Leukemia or Neuroblastoma or Sickle Cell or Aplastic Anemia or brain tumors. I miss the warmth and comfort of our old clinic. I can't wait to have them back. Until then, this is clinic. For both our boys. Both of whom will be in need of checkups in the next couple weeks. Both of whom are doing so well. Tonight I'm praying for the children here who are not doing so well and who still have long battles in front of them. And for their parents who fight these battles beside them, and seek answers to haunting questions and solutions for impossible problems and comfort for inconsolable circumstances.


Anonymous said...

All very difficult questions. You know I've traveled far and wide through Caringbridge...I've seen so many children with cancer...some make it, others don't. I can tell you that the Lord DOES know why. Wouldn't it be better for Him to call a child Home than have that child grow up and fall from faith? While others who have gone through it and survived go on to do great things. There could be so many other possibilities. But the point is, the Lord does know, He's got a reason and we need to leave it all in His Hands. Am so very thankful that Drew will back home tomorrow!!!!!!!!!
The Lord is with you right now, lifting you up, giving you strength! Always praying!
Isaiah 40:28-31 Hast thou not known? hast thou not heard, that the everlasting God, the LORD, the Creator of the ends of the earth, fainteth not, neither is weary? there is no searching of his understanding. He giveth power to the faint; and to them that have no might he increaseth strength. Even the youths shall faint and be weary, and the young men shall utterly fall: But they that wait upon the LORD shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; and they shall walk, and not faint.
Prayer Bears
My email address

Anonymous said...

The Lord will always be there to get you through whatever you have to face. Praying!
2 Corinthians 12:9-10 And he said unto me, My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities, that the power of Christ may rest upon me. Therefore I take pleasure in infirmities, in reproaches, in necessities, in persecutions, in distresses for Christ's sake: for when I am weak, then am I strong.
Prayer Bears
My email address

Anonymous said...

Dear Angela,

I started following your blog very randomly about a year ago - I was looking at a friend's blog and just clicked on 'Next Blog'. However, I love your writing and I admire your outlook very much. And your blog and reading Brandon's story inspired me to sign up to the bone marrow donor register last year, and to get several friends to do the same.

Hope you're all back home by now.


Casey said...

That was awesome Ang. Made me cry.

Angela & Albert Fontenot said...

Thank you, thank you, thank you for joining the registry. It's amazing to think that a life might be saved somewhere because of your generosity and kindness.

Jules said...

I have walked a very similar path. I have two type one diabetics, and the few times we have spent time at Primary Childrens Hosptial have been both uplifting and humbling. There's nothing like walking the halls with your little one knowing you will take them home the next day only to see parents crying over the children they will never take home. It's awe inspiring and horrible all in the same breath!

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