Please continue to pray for Rachel...

Posted Friday on Rachel's Carepage (for new readers... Rachel is my cousin Lindsay's 3 year old daughter).

A Few Steps Back
Posted Jul 24, 2009 3:29pm

After the thousands of steps forward that we have taken without a step back, we have now taken a few steps back. Over the past few weeks some new things have been happening and neither Lindsay nor I had the energy to share them via this carepage. We have mentioned in the past about Rachel’s red blotchy eyes but they never really got any better. We started a new plan before our trip to Give Kids the World and Disney but that did not work either so over the past week we have been seeing and communicating with our doctors very regularly. A few days ago we were told the skin issues around her eyes were likely one of three things: seborrheic dermatitis (This would not be too bad), Graft vs. Host Disease (this is much worse than the first but in most cases it can be controlled), or a second yet different skin relapse of leukemia (no need for a comment here.) Needless to say… we’ve been stressed.

So what is it? - Today we saw a team of doctors from Bone Marrow Transplant (we had been released from BMT several months back.) Their assessment is that Rachel has a mild case of Graft vs. Host Disease. Big sigh of relief here…. But not a total sigh of relief. GVH in most cases is treatable and goes away in time with heavy steroid doses. However, GVH can as Lindsay and I have seen, do some very bad things. Thankfully we have only a suspected mild case.
So what’s the plan now? – Rachel is now back on four medicines and will be for several months, they said to plan on six months or so. We have been put on a medium-heavy dose of steroids to combat the GVH. Rachel will also have to take some prophylactic (just in case protection) antibiotics and antifungals because we will be suppressing her immune system again. Hopefully her liver holds up well this time with the antifungals. For now we are back to weekly appointments meeting a group of doctors anchored by the director of the Bone Marrow Transplant Unit.
So what does this mean? – This is a fairly big step back but in its current state is not as scary as it could be; the BMT team deals with this all of the time. Rachel’s immune system will be purposefully suppressed to allow her new cells to “mellow out” a bit, which can be a little tricky sometimes. We get back into a daily regimen of timed medicine and likely roid rage to come as well. Rachel’s immunization shots will be pushed back likely for six months or more and her big one year post transplant work-up will be pushed back as well.

An important message to family and friends – Due to the issues that surround GVH and immune suppression Lindsay and I will be “locking down” Rachel a bit more and likely totally once the sick season hits. We can still go out a run around but we need to be more careful again like we were during the early spring. If any family or friends whom we come in contact with are potentially sick or have been in contact with sick people we need to know so that any contact can be avoided. Rachel can still play with her sister and cousins but we will all need to take a few steps back and wash hands religiously.
Thanks again for your continued support. We will post more often as progress is made. Please continue to keep Rachel in your prayers. We are relieved but still concerned, frustrated but very thankful that it’s a mild and very treatable condition.

Team Rachel
ALOR

PS: Rachel is the poster child for the Light the Night Walk at Sawyer Point put on by the Leukemia Lymphoma Society this year. You will soon see her picture on local billboards around Cincinnati. I have a ton of info on this event but I’ll save it for another day.