we would like a flashlight now

I suppose any time I write about Caemon’s current condition, I should remember that there are varying degrees of sick and similar varying degrees of darkness. Right about now, we could stand any number of devices that might keep the light coming.

For the past two nights, Jodi and I have taken turns not getting sleep. Last night was my turn, so tonight I am ordered to sleep. Caemon has taken a bit of a downturn in a few different ways. The issue with his mucositis is more challenging as it continues to get more raw and angry. His throat has taken the worst of it, and the poor guy has a good deal of difficulty sleeping for any amount of time before the saliva he keeps saving starts to make him cough. He is not getting much uninterrupted sleep at all.

More challenging, now, are the fevers that keep finding him. Yesterday, he was sent for a CT scan to try to identify any fungal infections that might be lurking, but because he cannot be sedated in his current condition, we found ourselves trying to convince a three-year-old who feels miserable to hold completely still with his arms up over his head while being pushed through a tube with scary red lights for a good fifteen to twenty minutes. As you may have guessed, it didn’t go so well, despite our attempts at making it the most interesting thing in the world (and it was interesting until he had to be in it). We called it off. The fevers are persisting, though, and while his blood cultures aren’t growing anything, something is clearly going on. Caemon is now on broad-spectrum antibiotics and antifungals and may soon be placed on a stronger antiviral. If this seems like a lot, it is, and it’s actually only scratching the surface of what is being pumped into our boy.

The latest medication being hooked up to Caemon’s pumps is one meant to suppress VOD (venal-occlusive disease), the liver problem I mentioned previously. Unfortunately, Caemon’s bilirubin levels have continued to climb, he’s gaining weight somewhat rapidly due to fluid retention, and his liver, we learned today, has grown a bit. While this was hard to accept today, it is clear when looking at his jaundiced skin and eyes that his liver is not functioning properly. I won’t lie; this makes me very nervous, but the fact that his team is looking so vigilantly for any sign of issues of this nature tells me that we are in good hands and that if this is VOD, they have caught it in its very early stages and should be able to keep it from progressing dangerously.

Jodi and I have been very much on edge through all of this because there is so little we can do but hold our boy and give him our love and comfort. I know that giving that is significant, but it is hard not to feel helpless in these moments.

For the past three days, we have had a very special nurse friend with us (as Caemon’s nurse), which has been such a blessing. She has held all our hands through these past few days, helping keep us from falling. She reminded us today something that more than one nurse has said:  Kids who sail through transplant easily are the children they worry most about. We should see complications going through transplant because we are putting our child’s body through so many processes bodies are just not meant to see. One certainly doesn’t expect to climb Everest without some scrapes, maybe even some frostbite or windburn or even broken bones along the way. Perilous journeys are fraught with risks and stumbles and even the occasional fall, but we take them because they are worth it in the end. We just have to keep remembering that seeing our boy beyond these double doors, outside of this hospital, running around free of tubes and machines and endless medications is worth every sleepless night and every moment of worry.

So please, keep holding those flashlights and lanterns and torches. We need them to see the rocks in our path, to keep us from stumbling on this most arduous part of the climb.

23 thoughts on “we would like a flashlight now

  1. We are sending our prayers as “flashlights” and our wishes as “torches.” You will all get through this–and Caemon will run around laughing beyond those double doors. We believe. Love and blessings to you all.

  2. Candles are burning, and prayers are constant for all of you. As each day gets longer, more light is coming and the dark hours will gradually be behind you.

  3. Sounds very tough going right now. Your resilience, and the resilience of C. and Jodi, amazes me. Thinking of you all often and hoping things ease for you all soon.

  4. Bright bright light coming your way. I am so grateful for the skill and compassion of the nurses and doctors surrounding. I am in awe of your ability to write about this, and so beautifully and wisely, when I know you are the midst of the absolute most difficult time of your life. I hope that all the fire in Caemon right now is burning away that which is no longer needed so the new life will grow abundantly and freely.

  5. Candles were lit before dawn as you rose for todays’ push up the mountain. Jagged crystals of ice reflect and magnify the light as the sun springs over the horizon, blazing its’ light over the peak above you. You’ll need strong dark goggles today, sunscreen to the max. Things are getting bright, and you see that a plateau is above you, making for an easy afternoon, and a comfortable camp. Sleep well tonight, and meanwhile, mind your footing.

  6. Hello Caemon and family. I just want to commend you on your courage, unconditional love and devotion to each other. You have been through so much. I am a nurse, and I am wondering if the mucositis is possibly the beginning of a steven johnson type syndrome. I thought perhaps you could mention it to the doctors and nurses, just in case he needs a change in dose, or needs to have some extra lab work done to check his tolerance to the treatment, and possibly make some adjustments. Without seeing Caemon it is hard to tell, but this can happen, and if it does it should be dealt with promptly. My Hannukah candles have been lit all night and are still glowing next to what is left of my christmas decorations, – some branches with lights and felted birds – One light for Courage, one for Angels to watch over him one for Enlightenment, one for Motherhood, one for Omnipresence of faith, one for Never give up. Two more for Timaree (Tough as you are – surrender yourself to take care of you) and Jody (Joy – see joy in the little things – which I know you already do.)
    Keeping you in the light

    • Thank you, Charlene. The mucositis is most assuredly the result of the conditioning chemotherapy used to prepare the child for the new bone marrow. It is a very severe mucositis that all the children who undergo this type of conditioning have to endure, and the nurses and doctors feel that Caemon’s is quite consistent with this variety of mucositis. If it doesn’t resolve as his white blood cells begin to recover (as this type of mucositis does), then we’ll certainly explore these other avenues, including SJS. Thank you so much for your candles, the energy sent our way, and your words of kindness.

  7. Thanks again for keeping us updated, moms. Sending light to you three and positive thoughts towards relief for your sweet boy. Love you all.

  8. When Templar and Aurora are here Friday, we will play with the big flashlights they love so much. We will be pointing them your way. Love and positive thoughts are sent your way!

  9. Thanks for the post. Keeping you in our thoughts. Feeling helpless is hard but it is natural in this situation. You are doing your verymost best. Sheryl

  10. So sorry times are tough right now…this is usually the most difficult period after BMT (from the little I know about it). Caemon will get better with time, he is one tough little crocodile. Sending you all positive energy and lots of light through this most difficult time.

  11. Sending broad lighthouse beams of light from the other side of the country. Praying you all will see it as it sweeps across the landscape and points all safely into harbor.

  12. This sounds unbelievably hard and terrifying. I hope Caemon’s liver improves. The days are getting longer now with more light each morning. We’re thinking of you always and sending love.

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