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It’s been a month, so I suppose I owe everyone an update.
Let’s see, they found a perfect 10/10 match for Eli in the bone marrow registry. That’s great news, but honestly, we’re still hoping we won’t have to go to that extreme of doing a transplant. The latest results from his last bone marrows in June were that 98% of his chromosomes are showing an abnormality. 75% show two abnormalities and the rest are showing only one. This is actually stable from last time, so Dr. Prockop in NY is happy to continue to wait and see if things get worse or not. He hasn’t needed a blood transfusion in a month, so that is good. His ANC is still really low (neutropenic), so we decided to stop the Exjade for a while because it is known to lower counts. Since he’s not getting transfusions, we can take a bit of a break from trying to lower his iron levels (which ultimately will take months anyway, it’s not a quick fix).
The last time we were at Blank, we couldn’t get either the top or the bottom lumen in Eli’s port to work. In fact, for the first time, Eli had to have his arm stuck to draw blood. So today we went in for a ‘dye study’ where they injected dye into his port to ‘watch’ it flow with a scan to see where the problem might be. They took us into a room where they had a large tv hanging from the ceiling. This tv showed a ‘real time’ picture of Eli’s chest. The port was very obvious and I think the techs were surprised at how many metal clips showed up from his extensive abdomen surgeries. Everything looked fine until they injected the dye and then it was very clear to everyone in the room what was wrong. 🙂 The dye went in and then immediately started leaking once it was about an inch into the line. Cracked line, gotta be replaced, end of story. So the port had a good 3 year run (at least), but they will need to put in a new one and take this one out. As it turns out, they were available to do it tomorrow, so Eli will be getting a shiny new port in the afternoon! Hopefully this one works well and lasts him for another long while.
Here are some pics of the dye study.
Port looks fine
There is your problem!
We were introduced to a new group called Miracle Travel Works that helps families with travel expenses for getting treatment for their child. They recently reimbursed us for our expense of staying at the Ronald McDonald House for 4 days, which was great. If any of our fellow cancer fighting families are interested, just go to http://miracletravelworks.org/ and go to the Contact Us tab. It’s a new organization and the people have been awesome to work with! Thanks to my middle school computer teacher in Adel for sending this our way as her son is involved in the program! Amazing how sometimes your past comes back to help you out in a significant way. 🙂
For those of you that didn’t see this on Facebook or on the News, our local KCCI station did a story that highlighted Eli to promote donating blood. You can check it out here, I think they did a really nice job with it: http://www.kcci.com/video/28331946/detail.html
That’s about it for now. Eli has been having a good summer at summer camp, has been getting in a lot of swimming, and has even reconnected with his buddy Henry, who has a heart of solid gold. We’ll definitely appreciate your prayers tomorrow as Eli undergoes outpatient surgery for a new port. We are once again thankful that this is something that can be done at Blank and we don’t have to fly to NYC for!
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