I spoke with Dr. Rob this morning and while Zachary's red cell count and platlets were great, his white cell count was up to 24 thousand. Not so great. He said this in deed confirms his diagnosis of JMML. We go in on Monday for his first chemo shot. Because we are not using the chemo to treat the lukemia, just to keep the white cells down, it is a bit tricky. He wants to do daily shots and see how his WBC responds to that. We are hoping that the home health nurse can come and do his injections rather than me taking him to the office once a day. We will talk on Monday about a game plan.
He also needs to have his central line removed as it is clogging at the ends and it was just a temporary line and not meant to last this long. So we will schedule a procedure that entails putting in another line that is futher down and the skin. He will be under general anesthesia and we will be there for a few hours. I'll let you know when we do that.
I forgot to mention here that my OB authorized me off for 4 more weeks and my work approved it. I am beyond thrilled. I can't imagine having to do all this while working and leaving his care to someone else. I know I have family and friends that could handle it but it is a just a huge responsibility and I would hate to put that on someone. I hate checking the placement of his feeding tube and flushing his central line. He's a baby and shouldn't have to go through this.
On a good note, he did eat 2 of 4 feedings all on his own! Aunt Sandy had the special touch and got him to eat 3 oz on his own! Yippee!! At this stage, we are taking it one day at a time and rejoicing in small things. What else can you do?
12 comments:
Oh Jen, I'm so, so sorry. You're so right, no baby should have to go through this and I'm just heartbroken for Zachary, and for you and your whole family.
I'm praying so hard for your miracle. And I'm here any time you need me.
((((HUGS))))
(((((Jen)))))) It breaks my heart to read this update. I will keep praying for a miracle. I am so sorry. ((((hugs))))
((((((((((MASSIVE HUGS))))))))))
I am so so sorry sweetie!!!! I am here for you and I am praying everyday for a miracle and that a match is found soon.
(((((((((((HUGS))))))))))))))
Elle
I wish baby Z did not have such a struggle so early or at any time in his life. I'm thinking of you all.
((((hugs))))
Oh ((((Jen)))) I'm so sorry that Z has to go through this. My heart goes out to him.
I'm praying every day for his miracle. Many P&PT for Z.
((((((hugs)))))) - Sending out prayers to you and your family.
Jen,
I am so sorry to hear the news about Z. Continued prayers & positive thoughts coming your way. Z WILL get the miracle that everyone is praying for. Thinking of you always.
Sandy & Eddie
I'm just heartbroken that the JMML diagnosis was confirmed. =(
I wish so much that your little boy wasn't going through this - it's so, so unfair.
Lots of love to you.
(((HUGS)))
Darin and I are praying for Z's miracle.
(((hugs)))
((Jen)) Im just heartbroken for you guys. What a hard journey you have been put on.
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