baby steps

It has been a week since we learned of Caemon’s relapse, a week filled with so much concern for our sweet boy and far too little sleep, but every day we have bits of progress. I know many of you are concerned about him, so I’ve got some updates for you. It’s a lot of information, but I know you want to know. Please tell us if you have any questions.

Caemon has been on oxygen all week. He isn’t hooked up to a nasal canula or a mask. For kids his age, they start with what they call “blow-by,” which just consists of a tube wrapped in soft baby blankets so that kids can snuggle with it and have oxygen “blow by” their faces. It works rather well, but it means lots of repositioning throughout the night when he really needs it–and he has really needed it much of the week. After a chest x-ray last weekend, we learned that he had a lung infection, and shortly thereafter, some blood tests came back positive for CMV (a virus many of us carry without knowing it, and something that is typically only harmful to pregnant women and immunocompromised patients). The infection has meant more antibiotics and antivirals, visits from pulmonologists, and plenty of oxygen. For the past day or two, however, he has needed a little less and a little less, so we’re hopeful that this infection may be healing.

Much of the day, Caemon is sleeping right now, and he has done very little eating of late. When he does eat, he awakes with a serious craving, usually of the bread variety. However, the fact remains he isn’t taking in nearly enough calories, so we’re either looking at returning to IV nutrition. As hard as this is to fathom, the access to nutrition should help his body start to heal more easily, which is something we definitely need.

One of the most significant issues we have been facing is extreme swelling throughout Caemon’s body. Because of his enlarged liver and spleen, his belly is quite distended and uncomfortable. In fact, much of his little body is. His team is certainly working on helping him eliminate the extra fluid, but it has been a difficult balance between keeping him appropriately hydrated and keeping him free of excess fluid.

While we were to initially have his new donor cell infusion yesterday, his doctors opted to move this back to next Wednesday in an effort to protect his lungs. When the body has an infection like a lung infection, it is not uncommon for the newly-introduced donor cells to immediately migrate to that infection, causing significantly more inflammation, which is something he certainly doesn’t need at this time.

I won’t lie: all of this is extraordinarily hard. We don’t see a lot of our boy these days because he feels so miserable, and he’s on so much medication. He is requiring a continuous drip of pain medication again and must have Benadryl to prevent reactions to his nearly twice-daily infusions of blood products, so he sleeps a lot. Sleep is important for his body to heal though, and we encourage it the best we can despite missing hearing his sweet little voice and seeing his beautiful blue eyes. Harder still is that because he is so uncomfortable, we cannot really hold him anymore. He will, however, reach his arm out for us as though he is a grown man, and pull us into snuggle on his chest. He regularly tells us he loves us and strokes our faces. These are precious, precious moments.

Recently, we obtained a referral to an accupressurist here on staff who will be working with us on helping Caemon’s system function a little better to relieve some of his pain. This is something we are able to engage in with our son. It feels proactive, and it’s just another way in which we’re trying to approach his healing. While there aren’t a lot of alternative therapies we can entertain given his delicate state post-transplant, we can support his system, and that feels very powerful right now.

We are maintaining all the belief and hope we can here, and we have been working to create a very intentional positive space around him. We ask doctors and other medical professionals to have conversations about his health outside the room, and we reserve his space for exams, for talking to Caemon, for creating a healing space. We entertain stories of miracles and recovery and talk about his future photo album filled with images of five- and seven-and fourteen- and twenty-three-year-old Caemon. There are days when it seems we’re trying to convince everyone who enters the room that he can make it, that he can beat this, and there are other days when everyone who enters the room is utterly convinced that he is a boy capable of miracles, that he will make it through this. We obviously prefer the latter, but there is something about the act of convincing that does make us believe more strongly. He needs that from all of us.

Snuggling Mama in his arms.

  Snuggling Mama (Jodi) in his arms.

IMG_8465

Snuggling Mommy (Timaree) in his arms.

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24 thoughts on “baby steps

  1. Mindy Luby (Sierra's mom)

    You mamas are amazing and your strength will pull Caemon through this. Lots of prayers and positive energy from our family to yours! Thank you for sharing your journey with us, we wait on the edge of our seats to hear news of Caemon and look forward to more good reports. From one cancer-mom to another… stay strong… you’ve got this!

    Reply
  2. Bree Davidson

    He is a boy capable of miracles and you are moms capable of miracles too. You and the incredible team are creating a space of healing and looking forward. I am sending so many good thoughts to you all and praying for renewed health.

    Reply
  3. kathy

    Timaree, Jodi and Croc, I just want you to know we think of you everyday. Our hearts break for all you are going through,but, we are all hopeful for your beautiful little boy. He couldn’t be a luckier child. You and Jodi are amazing and we wish we could do something more than send you our best wishes and love. Miracles do happen and I am sure one will happen for you.Keep on being strong and know there are many pulling for Caemon (and you as well) Lots of love to you all.

    Reply
  4. Jennifer

    Timaree, you guys are in my thoughts daily and I am praying with everything I have for a miracle. I believe that your precious boy will beat this!

    Reply
  5. Gia

    Not a day goes by since learning of his relapse that I don’t pray for him. I ask anyone I can (anyone that is willing to listen to me) to pray for him and to believe with me for complete healing.
    Those that know about his story ask me how he is doing and I always answer “he’s fabulous! He’s great!” and they always say: “oh really!” I say: “yes, he is. The human eye hasn’t caught up to those results yet but they are there… Just you wait!” (I’m speaking life into him I’m not gonna believe the negativity…he’s a miracle and I’m treating it as such!)
    On Thursday, I was approached by two women (I was wearing my Caemon shirt) and they asked me about it. When I told them your story, they grabbed my hands and began praying for him. As they were praying, one of them said, I kid you not, “Heal his lungs, Lord Jesus!” Of course, that threw me off because I knew nothing about him having respiratory problems! Then she said: “heal his kidneys” (which is what I had told her about, and I thought: “Oh, she probably confused the two…”) But I had never met these women, I was just wearing my shirt and they approached me because the bright orange caught their eye!
    *loving him to LIFE!*
    Loving you all, too!
    (((Hugs)))

    Reply
  6. Trisha

    He is for certain a miracle! Thanks so much for the update. Sending lots if hugs and snuggles! Your love is amazing!

    Reply
  7. Shannon

    Not a day goes by that we don’t think of your family and send our strongest wishes for healing and love. We are all pulling for little Croc, we got this!

    Reply
  8. golbou

    We think of you daily. Z sends kisses and hugs and sometimes shouts caemon get better! Caemon we believe you are magic and look forward to a play date when you get home!

    Reply
  9. Maryellen

    Thank you for the updates. It helps us to focus our prayers. Sending you much love and energy to keep up your battle. What an amazing, strong, and loving family you are. God bless you.

    Reply
  10. Helen

    Continued prayers for healing and recovery are sent your way! I can picture Croc as an older boy, a teen and a man, he will be awsome as he is already an awesome little guy! Hang in there…these days are hard but I too believe that it will get better….it has to! LOVE and HEALING!!!!

    Reply
  11. Adria

    So pleased to read this post. Thanks for the update, and, as always, sending love your way. Stay strong, Moms, and keep healing, Caemon!

    Reply
  12. Leslie

    Anything is possible…he will be a loving, brilliant, giving, strong, smart, caring, healthy, happy, man some day. Thanks for the update, you are always in my heart, on my mind and in my prayers. (((hugs)))

    Reply
  13. zunzunbobo

    we believe in you guys, and think of you every day, though we don’t know you and you don’t know us. that’s the power of your little croc. he seems so mature and wise, even as he is just a little boy and needs his mamas. those pictures are so sweet. i love that you are doing so much (when you have so little room to wiggle) to make the space around him safe, comforting and healing. sending love and strength.

    Reply
  14. Kathy Hancock

    Wonderful update! Seems like good news that something other than leukemia has been causing some setback, a virus that will run its course.

    That is so interesting how the act of convincing others helps you. I can see how it would.

    Great thinking to create a positive space and keep the negative conversations out of his room. I have seen the effect that negative discussions can have. When my grandson was in the hospital for a month he was not quite 3, and as a major preemie he was not talking yet, so people weren’t sure what he understood. As a result, all conversations, including negative prognoses, were discussed in front of him as if he couldn’t understand.

    I had to put my foot down to his mom (sadly, a drama queen, who later lost custody) for spending most of her down time in the room on the phone telling people how sick he was and how he might not make it, because SHE needed sympathy. She said something about him being likely to die and he began to wail. That was when I told her to take it outside. She got really mad at me and said it was HER room, and I said, no, it’s DEVIN’s room.

    After she stopped the drama-laden phone calls in the room, I was able to get him to relax and be held, and get some oxygen in him. (He was in for RSV, another respiratory virus that can be deadly to preemies, and his oxygen stats were super low, even on high oxygen.)

    I don’t know how much he understood about the scary things that were said, but his crying showed me that he at least picked up on the tone and the energy and it scared him, terrified him.

    You are right on that Caemon needs to know with every part of him that you believe and we believe he is going to come through it and have a stellar future. What does he want to be when he grows up?

    Reply
  15. Kathy Hancock

    PS. A is for acupressure which is awesome. Very cool. Such an effective and relieving practice with no downside to it or bad effects that I know of.

    Reply
    1. Leslie Streight

      I don’t think I’ve gone an hour with a prayer sent your way for you and Jodi and another for Caemon in the week since the last post. I wake every morning wondering if I’ll hear today more news. Thank you so much for your beautiful, eloquent, and hope-filled messages.

      Reply
  16. Sheryl Hott

    Thanks for taking the time for the update. Really appreciate hearing how things are going. Keep up the good work.

    Reply
  17. Lyn

    Timaree, I have read your blog with tears, and have been praying for little Caemon ever since Becca gave me the news. I’m praying for comfort, for healing, for strength to face each new development, and for wisdom in all the decision-making. Thank you for sharing your story. Yours, Lyn from ST

    Reply
  18. Mrs. Pitt (@GDRPempress)

    What wonderfully strong, belief filled mamas. What a joyful, love filled life you’re giving this beautiful child.He is so lucky. You are so lucky. I can feel the love that you have for each other–what else matters? Then to know that those we love, can undoubtedly close their eyes and feel the light of that.

    Reply

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