I’d like to begin by thanking everyone for the outpouring of love and support.  Every phone call, every email, every text, every facebook message, every tweet, every comment on this blog has meant so much to us.  None of it has gone unnoticed.  We spent the better part of the day taking care of funeral arrangements.  We’d like to share details of those arrangements with you now.

Visitation
Wednesday, February 10th, 3pm – 9pm
Modell Funeral Home
7710 S. Cass Avenue
Darien, IL 60561
630-852-3595

Mass & Internment
Thursday, February 11th
9:15am Prayer Service at Modell Funeral Home
10:00am Mass at Christ the Servant Church

Christ the Servant
8700 Havens Drive
Woodridge, IL 60517-7573
(630) 910-0770

We will then proceed to Clarendon Hills Cemetery for the internment.

Clarendon Hills Cemetery
6900 South Cass Avenue
Darien, IL 60561-3699
(630) 968-6590

Ashley passed away peacefully in my arms this evening at 9:25pm. She was visited and blessed by our priest this morning.  Our hospice nurse was on hand throughout the afternoon and well into the evening to ensure her comfort.  Adrian held her for hours and she amazed us all because her heart continued to beat so strong despite the fact that her breaths were very shallow.  It gave us great comfort to be with her, holding her, as she passed.  It also gave us great comfort to know that she is finally at rest with her Grandmother Lilia and Great Grandmother Jessie in heaven.

Funeral details will be forthcoming. However, I can share with you the name and address of the funeral home and our church.

Modell Funeral Home
7710 S. Cass Avenue
Darien, IL 60561
630-852-3595

Christ the Servant Church
8700 Havens Drive
Woodridge, IL 60517-7573
(630) 910-0770

Ashley had a rather restless night and in the past day we noticed that her left arm was getting swollen. So we took a quick trip to the Day Hospital of CMH. After consulting with Dr. Morgan we decided to cut back her TPN and up the dose of her Fentanyl. Dr. Morgan also commented that she didn’t hear breaths out of the left side of her lung. The left side is where the tumor is and the tumor is what seems to be distrupting circulation, thus the swelling of her arm. So we’re back home now and hoping to see a happier, more comfortable Ashley in the next 24 hours or so.

It’s hard to believe that February is here. January was somewhat of a blur. We spent a week in the hospital and then began the transition to hospice care.  There were a couple of days where Ashley surprised us all and felt well enough to go to school.  It seems those days are behind us now.

Throughout her treatment whenever people have asked how she’s doing I’ve always tried to put a positive spin on things and share the positive, but this weekend as I’ve been asked how she’s doing, I’ve had to be more honest.  She’s getting weaker day by day.  She’s working harder for each breath. She’s become more difficult to understand as her speech is being affected by the location of her tumor.  We’re all doing everything we can to bring her comfort and happiness throughout each day.  There are times when she prefers to rest in her room and other times when she prefers to rest in the living room. Whether she’s awake or sleeping she likes to have cartoons on in the background.  Most often she’ll ask to watch Wow Wow Wubbzy, but this weekend she’s changed things up a bit and has asked to watch Strawberry Shortcake.  Regardless of where she’s resting she keeps her little bubbles in hand along with her favorite soft, purple blanket.  She has moments where she’s playful.  I’ll ask her for kisses and she’ll say that all her kisses belong to her Daddy.  She has moments where she’ll assert her authority and tell our cat, Bailey, to behave.  She’ll ask for  sips of “juice” which is actually Iced Passion Tea from Starbucks.  So our daily trips to Starbucks always include getting some “juice” for Ashley.

Tonight I began the task of going through pictures, a task I had been avoiding.  I’ve always been the type of Mom to have a camera in my purse or diaper bag.  More recently I’ve found myself taking pictures with my iPhone.  Despite the fact that I sometimes feel like the paparazzi because I take so many pictures of my girls, it took a lot less time than I expected it would to go through all of our pictures. This served as a brutal reminder that three years of life is much too short, tragically short.

We ask that you continue to keep Ashley and our family in your prayers, but I also that you keep those who have lost a child to cancer in your prayers as well as those that continue to be in the fight.

Just a quick update to let everyone know that Ashley came home on Friday.  With her came a lot of new medical equipment.  She’s on oxygen and and she’s connected to a drainage pump for the fluid that builds up around her lungs.  She’s full of smiles and giggles throughout the day, but more often than not she’s just tired.  Our main focus is now on keeping Ashley as comfortable as possible and keeping things as normal as we can for Lindsey.  We want the girls to enjoy every moment they have together and with this in mind we hope everyone understands that we’d prefer not to have any visitors at this time.  We are so thankful for all your love, support and continued prayers.

I had hoped to post a more cheery update between my last one and this one, but alas time got away from me.  When we found out just before Thanksgiving that Ashley had relapsed, needless to say, we were devastated. I think I walked around in a catatonic state for days, alternating between feelings of numbness and despair.

Thankfully we were able to take some time to get away over the holidays.  I hope to post some pictures for you soon.

This past weekend as we were still recovering from the holidays and our travels, we noticed that Ashley was really lacking energy and had little interest in playing.  On Monday we decided to take her to the hospital and after an assessment by her oncologist we realized that her disease had progressed.  Ashley is in the hospital now and will be there for the rest of the week.  We’re working with her doctors to keep her comfortable. Some of the measures being taken now are really only ‘band-aid’ remedies for a disease that obviously isn’t treatable with band-aids, but our overriding goal is to keep her comfortable.  I’ve said this before, but it bears repeating.  I’m eternally grateful for all the wonderful people who have come to be a part of Ashley’s life.  From her preschool teacher, to her home nurse and all the nurses at CMH, we are truly blessed to have these remarkable people in our lives.

Thank you for your continued love, prayers and support.

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.