This might be the most difficult thing I’ve ever had to write.  As many of you know, we were concerned about some of Ashley’s most recent scans.  Last Thursday a biopsy was performed and yesterday we were informed that the tumor has returned and that it is non-curative. This is our greatest fear realized and as difficult as this news has been to process our focus now must be on enjoying the time we have left with Ashley.

Thank you for keeping our family in your prayers.

Quite a busy week for us! On Wednesday we had a follow up appointment with neurosurgery. Ashley’s spine looks good. I also got to see her latest scans on the computer. That was a bit sobering.

On Thursday we spent the day at the hospital again. We started our day in Cardiology and basically we’re going to keep an eye on her. There was a slow down in the shortening fraction of her left ventricle. It’s not dangerously low, but because there is a change it needs to be monitored. We’ll go back in a month after chemo wraps up and get another ECHO and see where we are at that point. In the meantime she came home with a Holter monitor and had some additional labs drawn to measure her heart health.

She then had a biopsy of what we think is the return of the tumor and we should have pathology results in the next week or so. We, of course, will share those results with you but in the meantime we’re asking for your prayers. It’s been a really long road for us (14 months) and just when we thought there was an end in sight, we have these new concerns and fears.

Thank you, as always, for your love, prayers, and support.

It’s Sunday night and we’re writing from 4W at CMH tonight. Ashley’s blood cultures came back positive this morning. The specific strain of infection will not be identified for another day or so but she is being treated with a broad coverage antibiotic (vancomycin) for now. This is good news because at least we know the source of the fever.

We still have other serious concerns that are related to her heart and changes to what we thought was scar tissue on her lungs, but those concerns will be addressed by the cardiologist and ENT surgeon in the days to come.

Good night and thank you for all the kind messages of support.

Last night Ashley came down with a fever of 105. Just as we were packing up to go to the hospital we got a phone call from her oncologist with results from the scans she had earlier in the week. In previous scans there were areas that were thought to be “scar tissue” from her surgeries. We were always told that they’d keep an eye on it and if there were changes in the future they would know that it wasn’t scar tissue, but potentially tumor. Her latest scan showed growth of what they previously thought was scar tissue. The oncologist will talk to the surgeon some time next week to discuss next steps.

Last night we spent a long night in the ER (10pm-7am) while Ashley had bloodwork, a catheter, xrays, and antibiotics. Her blood pressure was really low and so we were officially admitted for low blood pressure. She would’ve received chemo from her home nurse today, but I’m not sure if she’ll end up getting that in the hospital. She’s receiving a blood transfusion now and they’ll continue to monitor her blood pressure.

We are obviously very concerned about the latest scan results and we thank you for keeping Ashley in your prayers.

The first picture is from this morning. The second picture is from last night in the ER.

It was a tough day at the hospital. Ashley had a CT, MRI, Echocardiogram and chemo today. Towards the end of the day doctors came to us and said that there were some “concerns” about her ECHO and that a follow up would be scheduled with cardiology. We don’t have an appointment with cardiology yet, but as soon as we have more information we will pass it along.

For now we ask that you please keep Ashley in your prayers. Some of the chemo drugs that have been  used throughout her treatment are considered to be “heart toxic” and so we pray that her heart remains strong after all the chemo that she’s been through.

I’d also like to ask that you keep Ashley’s friend Macy in your prayers. Her website is here.

Macy is one of the most beautiful little girls you’ll ever met. In Spring 2008 she was diagnosed with Clear Cell Sarcoma of the Kidney. At the end of her treatment it spread to her brain. After a summer free of any treatments, it was discovered that Macy had AML (Leukemia). Each night as we think of her and include her in our prayers, we can’t help but think that great things are in store for her future. The trials that she’s faced in her young life have surely prepared her for greatness later in life.  She’s such a remarkable little girl. Her strength is truly a source of inspiration.

Thank you for keeping up with Ashley’s progress. This can sometimes feel like a very isolating experience and all the comments and messages of support mean the world to us. Ashley will continue to receive chemo for the rest of the week via our home nurse. After this round of chemo only two remain and her treatment protocol will be complete.