inching forward

Yesterday, Jodi and I had a meeting with one of the doctors from the Bone Marrow Transplant (BMT) unit. It was a length, two-hour meeting involving details about all of the medications Caemon will be receiving, including the chemotherapy regimen, as well as any of the complications that can arise from these medications. Some of the complications are immediate, while others are more long-term, but needless to say, it was all a bit overwhelming. In many ways, however, there was a greater sense of relief in knowing what we can expect and knowing that this team has a plan for absolutely every turn of events. They have plans and backup plans, and they know what they do so very well that they are able to avoid many of the complications that were commonplace not long ago. All of this is reassuring given the risky nature of the BMT process.

We learned, too, that the twenty-four-year-old woman is definitely going forward as the donor. She is somewhere in the United States (although it is not uncommon to have international donors), so on the day they harvest her marrow (probably the day before Caemon’s transplant), a courier will fly with the marrow, and bring it to us. I can’t help thinking about what this young woman must be feeling about this, but I hope one day we can meet her and thank her for the most precious gift anyone could give us: saving our son’s life.

Tomorrow, Caemon will go in for another bone marrow biopsy and another test of his spinal fluid. The poor boy will have to go without food the entire day tomorrow, as they have scheduled him for a 4:00 surgery. We have a little lie we tell Caemon on days like this, as it seems the hospital occasionally just runs out of food. We don’t know why it happens or why they are suddenly able to replenish their supplies after Caemon visits the “warm room” (his term for the operating room), but no-food days often result in frequent “calls” to the kitchen to inquire whether the hospital chefs have returned from the grocery store. How long our little ruse will continue to work, I do not know, but at least his parents and care providers don’t have to be the bad guys who keep him from eating.

After tomorrow’s adventures, if his counts come up more, we may have the opportunity to go home for the weekend. There was some talk yesterday that we might try to push his BMT admission back a week, but it appears that the oncologist and the BMT doctors have come to a consensus that next week is still the week. Whether we come in Monday or another day is yet to be determined, but for now, we are sticking to the rough schedule that was laid out for us.

9 thoughts on “inching forward

  1. Surely by now Caemon knows there is food in the cupboard in his room, right? What are you going to tell him about that one, Mommy? 😉

  2. I donated bone marrow as a 21 year old young woman to a child through an anonymous match. It hurt, but I always figured, what is one prick for a child who endures many? I’ve silently followed your story since it was a TTC in search of a genius, myself a young lesbian looking to build my own family, very very soon, but dreaming about it since before my marrow donation.

    I wish you strength.

  3. God Bless and best wishes for the best possible results. I hope that this beautiful little boy continues getting better and that someday you will all have the chance to look back on this. As someone on the BM donor list I hope I get the chance to help make a difference in the life of someone like Caemon. Good luck, hope all goes well

  4. I think about your donor daily and when I do my heart swells with love and gratitude towards her and others like her who give so selflessly. I sure hope you get to go home for at least a couple of days. sending hugs. ((()))

  5. I hope that you receive some comfort & clarity by pouring out these words & knowing that there are many, like me, that have never met your family but are calling in our angels as well. Love & light to all of you on this dark rocky path!

  6. Any time I think things are hard with my twins I think of you all and Caemon and the strength you exhibit. I cannot even begin to imagine. I sincerely hope you get to go home for a few days. You are in our thoughts and prayers.

  7. May the angels of love and luck watch over you. May good things and blessings surround you. We are thinking of you and your precious boy–hoping and praying and trusting that everything will go well.

  8. You don’t know me…I found your story on a friends Facebook wall. I went to high school with Shannon Mondor. I have been truly moved by your family and this journey you are on. Your family is beautiful and your little boy is truly remarkable. I wish you all the love in the world. Praying for an amazing little boy and his amazing moms. Much love from Pasadena, California.

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