March 2, 2009

MONDAY, MARCH 02, 2009 03:49 AM, PST

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.

Advertisements

About Mindi Finch

Living with Magnificence. Kicking Childhood Cancer's Ass.
This entry was posted in diagnosis. Bookmark the permalink.

3 Responses to March 2, 2009

  1. Ahmed says:

    IKR!! So wish I had an ipad but does anyone know if it works on the ipod touch ??? cuz im gntiteg one for xmas and if anybody wants to be my friend in webkinz world the my username is the name i used here Thnx !! lilgirl78

  2. news says:

    Thanks for that! It’s just the answer I needed.

  3. Dayana says:

    he was getting maerird to my girl my stomach just dropped out of me. and then jeremiah i cried so hard when the letter wasnt his, it was conrads he lived his whole life second to conrad. I dont know hoe Belly did it. I could never pick, never not pick. Ugh ! ahah and how did Jeremiah [edited for spoilers] :S I cried so much, and im still crying aha. I love Jenny Han but I dont think i could ever pick between one of the boys 🙂 P.s My sister said the funniest thing because the description on the inside of the book said i always knew i would be belly fisher one day, just not like this and she said omg emma shes totally going to marry their dad. I laughed really hard. Would have been an interesting twist huh? 🙂 hhaha

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s