People have always admired Caemon’s eyelashes. They are impossibly long and full and frame his beautiful eyes so perfectly. A few days ago, when we were discussing just whether or not he would lose his lashes and brows this time with one of the nurses, she described his lashes as “spindly.” I was a little surprised, and then I looked and noticed that they have, in fact, become rather sparse. There was no need to question. The lashes were already falling out.
Today, when Caemon awoke from his nap, I saw four or five lashes scattered over his face. As he laid there rubbing his eyes, off came a few more. Jodi and I took turns picking them up and blowing them off of our hands as we wished what mothers wish when their children are stuck in hospital beds.
We are wrapping up Day -3. For a couple of days now, Caemon has been receiving new chemotherapy drugs along with something called ATG (thymoglobulin). It is a substance that acts as an immunosuppressant, which will keep Caemon’s body from rejecting the donor marrow. As you can imagine, it is quite rough on the body; it is also highly likely to cause allergic reactions. Caemon has to be premedicated with antihistimines, steroids, and Tylenol to minimize these reactions, but just in case, just outside his door is an emergency stash of things like epinephrine, extra hydrocortisone, more Benadryl. Seeing these any time we enter or exit his room reminds us just how precariously we are living now. At the same time, we know these nurses and doctors have got this under control.
Our poor boy has been on a couple of different steroids for the past two days, and they make life so hard for him, causing him to be crabby and disagreeable for the majority of the day.Even so, he has managed to seem mostly himself until today. Today he awoke wanting to do little more than watch videos, and this was true most of the day. We pulled out various toys, but he felt lousy and wanted the comfort of the same five Berenstain Bears episodes over and over again. As much as Jodi and I used to limit his screen time, we are finding it helpful here to let him escape his reality a little and get through the harder days with more ease.
The day culminated in Caemon feeling worse and worse and finally spiking a fever. Although the fever has gone down on its own, and the ATG commonly causes kids to spike fevers, the standard protocol here is to draw blood cultures to make sure there are no infections lurking, and then they’ll start an antibiotic as well. We have been down this road before, so while it is upsetting to see our son feeling so awful, we also know this is one of the rites of passage on his way to wellness. This process is supposed to have its complications. The body is supposed to dislike losing its immune system and healthy functioning cells. This doesn’t take all the worry away, but it can be reassuring to know that Caemon’s body is responding as it should.
Caemon’s transplant is Thursday. It is hard to believe just how quickly this day has come, and we find ourselves feeling both hopeful and nervous about it. This is already a rough road, and we know it only gets harder from here. Still, we have plenty of distractions to keep us from sitting in too much anxiety. Today it was a visit from Santa and making eyelash wishes. Given that this is the season for miracles, we will welcome them any way we can.
C is for Crocodile 
Wishes and love. Almost there, just a few more days and then you can begin the climb back down the mountain. Your little hiker is so full of light and courage; it is obvious in his eyes. Prayers and blessings to you all.
We are former 7 Long residents and don’t know you but feel a connection with your story. We spent 8 months on 7 Long and not a day goes by that I don’t think about all the little kiddos (and their parents) that spend their days there. You are in capable and loving hands with the staff, as you already know! We are sending you love and blessings. You are doing awesome Moms… keep it up!
Beautiful boy! I love the pictures with santa. I can’t believe how close you are to Caemon’s transplant. I’m holding you in the light.
My sister used to limit screen time with my niece. Somewhere in her second year, she developed Herschsprung’s disease. She had a stoma and a bag for so long. She’s 18 this year and wicked smart, just joined cheer. I remember the Christmas before she got all hooked back up was really hard for my sister. She got all these cards–Happy Holidays from Hawaii, etc. where her holidays were in the hospital. Hang in there, everyone. Thinking about you.
You all deserve miracles! What an incredible and strong family you are. In our thoughts all the time.
Sending all my eyelash wishes….and hugs.
My son has the same lashes and if C needs an eyelash wig, we will be happy to donate! Sending love and lash kisses from my son to yours.