Good morning. We made it through the weekend. Time went amazingly fast. Yesterday the fear and grief finally set in. This going to be a long haul. Knowing it's going to be a long haul and then finally realizing it.
We have been discussing a diagnosis of MDS and a sub-set diagnosis of JMML. Juvenile Myelomonocytic Leukemia. It's pretty flippin' rare. An analogy Dr Reynolds used with my parents was that if you saw 25 patients a day, it would take you 18 years to meet a patient like Gregory. There is a possibility that we will be heading home soon. The proposed game plan is that we will monitor it for a few months and if things don't change, we pursue a Bone Marrow Transplantation. Which is done in Seattle and includes a 100 day stay, post op. It all sounds so daunting.
There is an ever so remote possibility that this is just a viral blood infection. Which I think, scares me more. What if that's not true and we find out later and it's much more aggressive? I would feel so much better to have a plan of action. I don't do well with 'sit and wait'.
More testing will begin today. Not exactly sure, yet, what today's testing is for. Thankfully, the central line allows for pain free blood draws.
Gregory is doing really well. He's one sick little guy, but he has charmed the pants off everyone he comes in contact with.
Thank you for ALL of your prayers and well wishes. It does help to know that all of you are out there, cheering us on. It also helps to polish my silver lining that is starting to tarnish.
Yesterday we had a visit from Cristy. Thank you, doll. I love you.
Peace, love, joy & music to you all. Until later. Gotta jet.
We have been discussing a diagnosis of MDS and a sub-set diagnosis of JMML. Juvenile Myelomonocytic Leukemia. It's pretty flippin' rare. An analogy Dr Reynolds used with my parents was that if you saw 25 patients a day, it would take you 18 years to meet a patient like Gregory. There is a possibility that we will be heading home soon. The proposed game plan is that we will monitor it for a few months and if things don't change, we pursue a Bone Marrow Transplantation. Which is done in Seattle and includes a 100 day stay, post op. It all sounds so daunting.
There is an ever so remote possibility that this is just a viral blood infection. Which I think, scares me more. What if that's not true and we find out later and it's much more aggressive? I would feel so much better to have a plan of action. I don't do well with 'sit and wait'.
More testing will begin today. Not exactly sure, yet, what today's testing is for. Thankfully, the central line allows for pain free blood draws.
Gregory is doing really well. He's one sick little guy, but he has charmed the pants off everyone he comes in contact with.
Thank you for ALL of your prayers and well wishes. It does help to know that all of you are out there, cheering us on. It also helps to polish my silver lining that is starting to tarnish.
Yesterday we had a visit from Cristy. Thank you, doll. I love you.
Peace, love, joy & music to you all. Until later. Gotta jet.
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