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.

We paid a visit to the ER earlier in the week. Ashley came down with a fever of 104 on Tuesday and ended up being admitted to the hospital for the night.

As much as you never want to spend time in the hospital, we are always so thankful that Ashley is being treated at CMH. Everyone from the ER staff to the nurses on 4W are heaven sent!

She’s home on antibiotics now and continues to recover from her last round of chemo. Thank you for keeping her in your prayers.

Wow! Week 42!! It’s almost surreal to think that we’re in the home stretch! Including this week, Ashley has 11 weeks and 4 rounds of chemo to go. As most parents of children who have faced life-threatening illneses will tell you, you draw strength from your children. I am constantly in awe of Lindsey and Ashley and how they’ve both handled all that they’ve been through this past year.   Amazing doesn’t even begin to cover it.

Ash continues to get chemo every day this week through Saturday, administered via our home nurse. She then gets two weeks to recover before her next round of chemo on Week 45. 

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

I’m writing tonight asking for prayers for a sweet little girl named Macy. We met Macy and her parents while Ashley was going through radiation. She’s a beautiful little girl whose smile lights up a room.  Macy was diagnosed in March 2008 with Stage 4 Clear Cell Sarcoma of the Kidney.She underwent 30 weeks of Chemo and Radiation.  Upon completing treatment, a lesion was found on her brain which required more chemo, more surgery and more radiation.  Earlier this month, Macy was diagnosed with AML a form of Leukemia.   I’d like to ask that you keep Macy, her brother Ethan and and her parents Michelle and Chris in your prayers.  Macy is an amazing little girl and your prayers will give her strength.

I would also like to strongly urge anyone who is in the Chicago area to get tested to be a bone marrow donor.  The following info on becoming a donor is from Macy’s website ( http://www.caringbridge.org/visit/macybellaganz ):

BECOME A DONOR!
Many of you have asked what you can do to be tested to be a match…it is simple!  You must be between 18-60 years old and in overall good health.  Young males tend to be more favorable matches.  So boys, get your butts out there!!

If you are local, the Lemont Fire Protection District is hosting a Bone Marrow/Stem Cell Drive in honor of Macy on October 4th.  The test is a simple, painless cheek swab and answer a few questions.  If you are not interested or do not meet the criteria, donations to the National Marrow Donor Program will also be accepted.  Information for the drive is as follows:

Sunday, October 4, 2009
8am – 12noon

Bone Marrow/Stem Cell Drive in Honor of Macy Ganz
Lemont Fire Protection District
15900 New Avenue
Lemont, IL 60439

Bring the kids!  The fire department is also hosting their Open House that day from 11am – 2pm (during & after the drive).  The kids can sit in the fire trucks and witness fire and extrication demonstrations.

If you are unable to attend, or are not local, you can register at www.bethematch.org.  You will order a registration package with instructions on how to perform the cheek swab and where to send it to.  For further information or any questions, please visit www.bethematch.org.

We encourage everyone to do this!  You could save someone’s life – Someone like Macy!!  We hope to see you there!

I remember walking through Target sometime in July and seeing the school supply aisle set up. Out of nowhere it hit me and I got teary-eyed at the realization that Ashley’s first day of preschool was soon approaching. 

Well that first day came and Ashley proved once again that she can handle anything.   I walked her into her classroom and she immediately joined her class and never looked back. I guess it makes sense. Given all that she’s been through in the past year, preschool really is a walk in the park for her.  

When it was time to pick her up, her teacher said she had a great day and that she was very active and happy the whole time. She didn’t cry or miss us at all.  We couldn’t be more proud of her!

She’ll miss a lot of school for chemo and when she is immuno-compromised, but overall we’re looking forward to a great school year.