The last forty-eight hours or so have been so very hard. By the end of the day Friday, Caemon was very sick, and by yesterday, the doctors were trying to prepare us for potential ICU visits and making decisions we don’t want to have to make. These were the worst conversations, and they have had us very heavy-hearted. His disease is very aggressive, and it’s not been showing any signs of giving up. As the day progressed yesterday, however, things started to change a little. Caemon started eliminating a bit more fluid. Some of his swelling decreased, and he started breathing easier. This morning, his doctors came in more pleased, pleased that at this point he could turn around at all, pleased that his numbers are looking a little responsive to what they’re doing. That little bit of hope is enough to carry us for now.
Today, Caemon started a new therapy, a drug called Azacitidine, which is meant to affect his DNA in such a way that it may basically turn off some of his leukemic genes. It is treated a bit like chemotherapy, but instead of obliterating everything, it makes genes act differently, potentially helping get his leukemia under control. It is a rare drug here; the nurses, many of whom have been here for a decade or so, have not heard of it. We’re learning the best we can from the doctors, but it is a therapy that is quite a bit different from your usual chemotherapy. After five days of this infusion, he will receive another bag of donor cells (called a DLI: donor lymphocyte infusion). Beyond that, he gets more Azacitidine, and we wait and see if this works. It has worked in some patients; there is no telling how it may work for Caemon, but we have hope.
You see, not very long ago, leukemia was a death sentence to most children, and now, there are types of leukemia (a type of ALL specifically) with 90% cure rates. There had to be children who broke the mold, for whom treatments began to work. So much research is happening every day on this disease that maybe, just maybe Caemon can be part of a new round of survivors, a wave of miracles.
Today, when his team came in, one of the doctors said that his improved kidney function was a bit of a miracle. I would like this to be the first in a series of many. Let our boy be a miracle, a testament to what can happen when brilliant science and faith and love and magic all come together at once.
So, beloved supporters of Caemon all over the world, we have some marching orders for you: Keep your hope alive. Send love our way. Say your prayers and send your energy whichever way you know how. Know that miracles can happen and that our boy is pure magic.
On a slightly different note, yesterday, we moved to a new room. A nurse had asked us what he could do for our family to help us, and we told him we wanted to be able to stay in the same room together. He and other nurses began to explore different possibilities, and by morning, another dear nurse friend was calling to place an order for a bariatric bed (a bed with a width almost twice that of a normal hospital bed) and was arranging for a new room to be cleaned. The room is on the corner of the hospital with windows filling two walls–trees off of one side and water off of the other. It is a room for healing. We hope we’re here for awhile.
38 thoughts on “marching orders”
You are going to make it through this. We believe with all of our hearts that Caemon is a magic boy and that miracles want to flow through him.
That new room with the bed big enough for a family to snuggle in looks just right. What a view and what lovely decorations. A very healing place to be indeed and definitely a place for miracles to happen. Caemon is part of a very loving and magical family and is surrounded by people at your hospital and who are tops in their field for treatment, but also know how to nurture and care for a family so that miracles can happen. I am filled with hope for all of you everyday.
So much healing will take place in that room. Holding you all in my heart, hoping you feel surrounded by love.
That’s so beautiful! Wow! A new space can be magical and healing.
I am so happy to hear that the magic Croc continues to surprise with good news.
Back in 2006, my grandson spent almost a month in the Pediatric ICU in Honolulu. They helped us deal by giving him an actual room rather than having him in the big open area, but it had a black iron crib that looked like a jail cell, and only chairs to sleep in. His mom slept in the crib and there was no room for more. The view depressingly overlooked the biggest freeway in the state, was literally right over the traffic jam. It was Christmas time, but there were no visual signs of Christmas in our teeny little fluorescent lighted room that was really ugly, just the beeping and numbers of the machine reading his oxygen stats. They gave him less than 50-50 to survive, but he did! Not his first miracle, not his last.
Caemon will turn it around, and this room will help! Love the trees! (and the view).
I can only imagine how tough this part of the road is, but it’s great that everyone cares so much and is helping you with all they have.
Oh, wiling a series of miracles your way. Willing, willing, willing.
thinking of you guys.
Sweet c. You’re name is on my churches list of prayers ❤
Thank you for the update. So glad to hear of any improvement, however small. I have put out the prayer request to my facebook friends and have many warriors praying for healing for Caemon and for continued strength for all of you. I will keep them updated. Still with you…..hang in there Croc-man and Croc-mamas, hang in there.
What a beautiful, magical space for healing. I’m so relieved to hear that little Croc is doing better today. I think of him and you many, many times throughout the day and send all my positive light and love toward his healing.
Although this is my first reply to reach back out to you, you all have been on my family’s mind. My partner writes a blog about our daughter’s fight with the leukemiasaurus where you or your wife let us know you were out there. We have been sending light and love from Texas and will continue.
So glad you have a room so that you can be with your sweet little boy. I too believe in miracles, they are there and you will get yours. Please know you are all in my heart and thoughts. Thank your for taking the time to update us all on little Croc.
Ive never met you two or your sweet boy. Your story was passed on from a friend but every night I pray for him. Every time I read your blog I am in tears. I will continue my prayers and you should know there are thousands out here hoping beyond hope that he gets better. Much love and light to your beautiful family.
What a beautiful room, both inside and out! Miracles will happen there!
Such a beautiful room for healing! Caemon is and will continue to be a glorious miracle :)sending love and blessings to you!
May this room be a space for many more miracles, big and small!
Just came from yoga class….dedicated my practice today to Caemon. Every night I send him Reiki healing….
Water, trees, and your own croc-companion — such a beautiful space, ready for miracles.
have been holding you all as tightly as possible in my thoughts and prayers. your boy is more than something special. he is indeed miraculous. and amazing things are to come for all of you.
Praying very, very hard.
Sending you love, faith and hope.
love the bed and the new room. It makes me think of the studies of newborn twins whose vital signs are better when they are in the same bassinet, it may mean more than we can know for caemon to have both of you there with him. His family whole again. Orders accepted- hope and love to you and Caemon, sending healing energy every day.
Thank you so much for the pictures of your new room ~ it makes it easier to visualize Caemon surrounded in healing light knowing what his surroundings look like. I believe in magic, and I believe in Caemon the Mighty Croc. Last night I envisioned an adult Caemon reading this C is for Crocodile blog. Miracles happen every day. Thank you for allowing all of us to be your witnesses to Caemon’s miracle.
LOVE LIGHT JOY HEALING is beaming to you three from the Redwood Coast.
Thanks for keeping us all updated on sweet Caemon’s progress. Sending so many prayers for his healing. You are constantly in my thoughts.
We have so much hope and are sending it to your beautiful new room. I love that the nurse found a big bed for you! How amazing!
Keep faith. Stay positive. Do research. Understand what the Dr.’s are saying, if not ask. You can never ask too many questions. I will keep you in my thoughts & prayers each day I wake. My heart truly goes out to you & your family. Hold strong & never give up hope.
I have just read your blog. I am sending good thoughts to Croc. He is an amazing guy! I am so glad that they were able to get you a bed for the 3 of you. He must enjoy having his moms with him.
Big hugs to all of you.
So happy to hear that Croc-Caemon is doing better, hoping this new treatment will work miracles (perhaps the key is in the DNA) and lots of healing will take place (I recently read an article in the NY Times about a little girl with Leukemia (Emma Whitehead) who relapsed twice and was then given a dormant form of the HIV virus to help “reprogram” her DNA and she is now in full remission, a few other kids have also had positive results with this DNA “reset”). The photos are beautiful, especially little C with his chocolate stained face. He is a magical boy, full of love and light, it just emanates from him, even in photos! I am wishing, hoping and praying with all my might, for his continued strength to beat this, and for his mommies to also remain strong during this most difficult time. It is great that you now have a special family room, I believe that this space will help promote healing and am sure that your precoius boy is thrilled to have both his moms with him in that great big bed! Keep up all that you are doing, it is all part of working the miracles that are about to take place! Love, Light, Strength, Hope are enveloping you all!
The Croc is magic! He is strong! His spirit is fiery! He is a fighter through and through…and his parents are exceptional guides!
Warmest wishes and powerful magic to you all. Praying hard. Scott
Beautiful room and so very glad you were able to get the bed to be closer to your little man. Hope and prayers sending your way that the positive news continues to strengthen your family and his health. That room looks like a very special healing space! I love trees — they are very magic and strong!
Sending you love and healing thoughts. I had a red Lindt last night for you little caemon. You have such an incredible support team around you to carry thru this dark place, but miracles can and do happen! Thinking about you always.
I am sending you all so much love and healing energy. Glad you can all snuggle together now. Healing indeed.
Sending you all so much love and healing energy. Glad you can all snuggle now. Healing indeed. You and your magical boy are in my thoughts all the time.
Timaree, we at Smarthinking are thinking of you and your son. I will be sending you positive thoughts and energy every day. If I can do anything for you, just say the word.
Praying for you all daily. What a beautiful space for Caemon to heal.
I’m thinking of you guys everyday and saying my prayers for all of you. I know Caemon will make it through this, I just know it.
I’m not a religious person but I’m praying SO hard for you. All of my hopes and thoughts are with you and your beautiful boy.