That seems to be the phrase that fits us the best. Dr. S. from Children's hospital called me last night and I was able to ask more questions and write down some answers. I at least now know why we are in a holding pattern and that it can continue this way for a few more weeks. So here is the information I now have:
Q1. What is this test in San Francisco doing?
A1. This test is taking some of Z's red cells to see if they can grow alone. JMML cells can grow independently without support...normal red cells can not.
Q2. What if this test comes back negative for JMML (meaning the red cells do not grow)?
A2. Then we will continue to watch his white and red cell counts. If the white continue to increase and the red decrease then we will send the blood to San Francisco again and repeat this test again (waiting for 2 weeks). We will do this because the ARC (chemo) Z had last month may have killed off the JMML cells and made his bloodwork appear "normal".
Q3. If it is positive (meaning red cells grow)?
A3. He has then met all the characteristics for JMML and we will move forward with a bone marrow transplant.
Additional information Dr. S gave me was that this could (his blood counts changing) be temporary (or a fluke) because some babies can do this. We want to be sure this is JMML and this is the final test for it.
That is our holding pattern. We wait and see. In the meantime we fatten the boy up with cereal in his formula and a high calorie formula. He seems to be holding down most of his feedings (knock on wood) and this morning at 2am he at 5 ounces! The most ever at one time!
Can someone tell me why my 3 year old son insists on peeing outside? Seriously, I only let him pee on a tree one time last summer (we were in the country) and I was hoping it would help him to become potty trained. Well he hasn't forgotten this time and while we have no trees out front he proceeded to pull down his pants and pee in the 6 inches of snow we got! Ah, my little red neck son!
4 comments:
Jen, Just wanted to send some love. I am praying hard that the tests all come back showing there is no JMML.
I'm so happy to hear that Z is eating so well!
I loved watching the video of him. He is smiling so big! You have to post longer videos in the future, btw! The ones you've posted so far are just little teasers! ;-)
(((hugs!))) I am thinking about you and praying daily.
Lot's of xx's and oo's!!!
P.S. Luvin' the story of JD peeing in the snow. I'm thinking it's a boy thing. Holden doesn't have snow, but he is famous for being caught over by the monkey grass!
Jen,
I'm LMAO at JD peeing outside. I'm sure if I let Kayleigh go once, she would insist on doing it all the time too! :-P
I'm praying that the test come back and show no JMML. It's wonderful that your little one is eating better. Yay!!!
((hugs)) and thinking about you!
That is great news about Z doing good with his eating and gaining weight. Sending many prayers your way. Hope the test results give you good news.
Tell JD to quit peeing in the snow and make my spiderman cupcakes.
((((Jen)))) I know the waiting is tough. Hopefully you'll get some answers from CA soon and it will be good news.
Give JD a hug for me and Jack.
BTW, Jack loves to pee outside too. I think it's a boy thing;-)
Post a Comment