We had an unexpected turn of events this week. Over the weekend, Ashley spiked a fever.  After taking her to the ER at Children’s Memorial Hospital, she was sent home on antibiotics.  The next day her cultures came back positive for a fungal infection.  So on Tuesday, she was admitted.  Yesterday, her PICC line was removed.  She had a port put in back in February, but it hadn’t really been used aside from being flushed once a month.   Now that her PICC line is gone, it will be so nice to be able to give her normal baths again.  We had to be extra careful with the PICC line and generally resorted to sponge baths.

You never really look forward to staying overnight in a hospital, but it is always so heartwarming to know that Ashley is well loved by all the nurses on 4W.  Nothing makes me happier than when the nurses who cared for her in the very beginning get to see her again, because we all know how far she has come.  The nurses on 4W are truly the most remarkable, extraordinary people in the world. 

We’ll keep everyone updated and let you know when she gets to go home. Thank you for all your love and prayers!

After a three week delay, we were finally given the go ahead to proceed with Week 23 of Ashley’s treatment protocol.  This round of chemo required that we give her Temozolomide which comes exclusively in pill form for five consecutive days. This chemo drug was newly introduced to Ashley while she was undergoing radiation.  As you might expect, getting a 2 year old to swallow a pill is near impossible. So we had to open the capsule and mix it in with food to get her to swallow it. This poses yet another challenge, because of how little food she consumes on any given day. She nibbles at food and tries different things, but doesn’t eat very much due to the fact that all her nutritional needs are met via TPN.  So when we had to give her this drug the first time we knew we only had one way to get her to take it and it was through ketchup, which happens to be her favorite condiment / food. The irony never escapes us that we are directed to dress in protective gowns and wear masks when opening the capsule to protect ourselves from this drug, yet here we are administering it to our sweet little girl hoping that it will do its job and destroy cancer cells.

I also failed to mention in my last post that during a recent clinic visit our Fellow informed us that Ashley no longer requires intrathecal chemo (lumbar taps / spinal chemo)  because there is no evidence of any cancer in the central nervous system.  This is very good news because again this is a treatment that required sedation each and every time.

Ashley is due back at Children’s Memorial on June 2nd for scans.  She now has a three-week break from chemo before the next round (Week 27) in which she will receive Vincristine, Doxorubicin, and Cisplatin.

From a developmental perspective, she is on track with her speech development and shows no delays in that area.  She continues to make progress with physical and occupational therapy.  She seems to have hit the Two’s and sometimes proves to be less than cooperative with her therapists, but she is continuing to make good progress nonetheless.  She is now crawling on her hands and knees which makes us very happy.  The therapy she currently receives is coordinated through the State of Illinois’ Early Intervention Program. However, at age 3 she graduates out of that program and begins receiving services through our school district. We’ve had initial meetings w/ the school district and it seems likely that Ashley would be in some sort of preschool program in the Fall.  We may also decide to supplement with additional PT / OT if we deem it necessary.

Thank you again for your continued prayers. We have everyone has a nice Memorial Day Weekend!

Wow! I didn’t realize how far behind I was on updating until I sat down to write THIS update. Radiation really took it’s toll on Ashley and the family as a whole.  At one point it got to be too much for her to handle and we had to stop to give her little body some time to heal.  It was hard on the family as a whole waking up at 4:30am each day and heading into the city and then waiting for her to wake up from sedation so that we could rush home to meet nurses and therapists.  However, I must say that Northwestern Memorial Hospital is truly a world-class facility.  Each and every day I was so impressed with EVERYONE there. Ashley felt so comfortable going there each day. She would literally leap in to any nurse’s arms.  This surprised me a bit at first, but at the same time I think she definitely felt well loved and cared for by everyone there.

Going into radiation, Adrian and I had a lot of concerns.  Radiating a child under three is guaranteed to have some serious long term side effects, but at the same time we had to consider how aggressive and deadly a cancer we were up against.  Dr. John is one of the most amazing radiation oncologists in the world. Adrian and I have a great deal of respect for him.  We felt very fortunate that the care of our daughter was in his hands. We spoke to him regularly and he was always very open to hearing our concerns and answering our questions. I will always remember one conversation in particular.  We knew that at a minimum Ashley would have 20 radiation treatments.  At one point, Dr. John approached us to discuss moving her up to 25 treatments.   We were really worried at this point, that Ashley was not beginning to tolerate radiation very well.  I’m paraphrasing here, but Dr. John said something that really hit home: “Ashley’s has a very deadly type of cancer. Very few children survive, but if anyone has a chance to beat this … it’s her. She’s a miracle.”  In that particular moment, we reflected back on all that Ashley has been through and realized that she truly is our little miracle.

So as much as we loved everyone at Northwestern, we are more than happy to be done with radiation.   We are now waiting for Ashley’s counts to recover before we can begin the next round of chemo.  We were at Children’s Memorial on May 6th and at the time her counts were too low to begin chemo that day.  It was heartwarming returning to CMH. We ran into so many of the doctors that have cared for Ashley and it was very touching to have them stop us in the hallway to ask how she is doing.  So for now we are on “hold” waiting for her counts to recover. Hopefully, her labs on Monday will indicate that she can begin the next round.  Since her platelets are low, she’s had some slight bruising and one day recently Lindsey noticed that Ashley had a bruise on her knee and said “Oh baby, do you need platelets? I’ll get you some platelets.” It was just the sweetest thing and it never ceases to amaze me how loving and nurturing Lindsey is.  I also don’t think most 4 year olds can make the association between bruising and low blood counts. 

I promise to do a better job of keeping everyone updated.  Shouldn’t be as difficult, now that radiation is behind us.   Thank you for all your love and prayers.  We know they are being answered!