Where to begin?  Well, just before 4am the nurse on 7W nudged me awake and told me we were being moved to 4W.  I wasn’t thrilled about the timing of our move, but once we got to 4W I was happy to see that our nurse would be Caitlin.  Caitlin is Ashley’s favorite nurse in the whole world.  She works nights and when we are in the hospital I often think Ashley gets her days and nights mixed up on purpose so she can stay up and hang out with Caitlin.  Really, who wouldn’t want to stay up all night playing peek-a-boo and watching Strawberry Shortcake, right? 

When morning finally arrived and the residents began rounds we discussed our options for permanent access.   It was decided that she would get another PICC line for now.  So just before noon, Ashley headed down to the sedation suite.  It’s kind of crazy to think that my little girl was sedated three times this week:  MRI on Monday, CT on Tuesday, PICC on Wednesday.   One of the sedation doctors even commented that she “sedates beautifully!”  About an hour later she was back in her room on 4W and the doctors returned to confirm that her surgery has been scheduled for Friday, February 6th.   We were thrilled to hear this news.  We were hoping that it would  have been this upcoming Friday, but we knew that the antibiotics would need to run their course and rid her body of the infection she currently has.  So we’re ecstatic to know that the big day is right around the corner.  When the doctors open up her chest to resect the tumor they will also evaluate if she can get a port placed in her chest at that time.  That news definitely made our day and to make things even better Ashley was visited by both Kimberly, the music therapist, and Willow, the art therapist.   She then received her scheduled dose of chemo for the week and by 8pm we were out the door and on our way home.  Great day all around!

It’s always in the back of my mind how quickly things can take a turn. Yesterday (Monday) was a really good day for Ashley.  All of the nurses on the 7th floor were starting to fall in love with her.  She had her MRI and Echocardiogram, both of which she needed before her upcoming surgery. She had been afebrile (free from fever) since she was admitted on Sunday.  The source of infection had been identified and was being treated with the appropriate antibiotics.  I began holding out hope that we’d be able to go home today (Tuesday).  Then nighttime came and she became very restless.  She continued to cry thoughout the night and neither one of us got any sleep.  When morning finally arrived I noticed that her chest and neck were very red and swollen.   This concerned me greatly because this is where the tumor is located.   She continued to be very agitated throughout the morning and developed a noseblood (the first one she’s ever had) and a short while later she vomitted blood (again something that she’s never done before).  The doctors examined her and ordered a CT scan which revealed that her PICC (peripherally inserted central catheter) line was out of place and so the fluid from her TPN (total parenteral nutrition) was filling her chest cavity thus making it look red, puffy, and swollen.   This was a huge relief to me.   I had been terrified that the puffiness indicated the tumor was growing. I was incredibly thankful that this was not the case.  So just a few minutes ago the doctors removed the PICC line.  She then had an IV put in for tonight.  She’ll need some type of permanent access again.  So we’ll discuss our options with the doctors tomorrow.  For tonight, we hope to get some rest.  Thank you for your continued prayers!

Ashley came down with a fever Saturday afternoon.  So we headed to the ER at 8pm.  It ended up being a really long night in the ER because the nurses had trouble drawing blood out of Ashley’s PICC line.   We also knew that the hospital was full to capacity.  We’d been told by a friend that the only kids being admitted to the hospital were the heme/onc kids.   However, the heme/onc floor (4W) was completely full so at 5am (yes! 9 hours later) we were finally assigned a room on the infectious diseases floor (7W) and while all the rooms are private / isolation rooms and a bit more aesthetically pleasing (in my opinion) it just wasn’t the same as being on 4W.   The hematology/oncology floor (4W) has almost become our second home over the past four months and there is just a level of familiarity and comfort that you find when you arrive and see all the welcoming faces of 4W.   It’s hard to believe I’m actually saying those words, because I remember so vividly how I would  breakdown in tears whenever we were summoned to the hospital during the first couple of months of Ashley’s treatment.  However, you definitely develop a bond with the other families and the staff on 4W. So we’re not sure how long we’ll be here, but if a room opens up on 4W we’ll be moved down there.   We were supposed to be here Monday morning anyway for an MRI,  so at least now we don’t have to deal with Monday morning traffic coming into the city.  Thanks for checking in. Please pray that the fever goes away quickly so we can return home for a few days before surgery.

I’m very happy to report that as I write this update, Ashley is sound asleep in her room!   The week after “in-patient” chemo is always hard on Ashley, but this particular week was a bit worse.  We had a few sleepless nights.  Ashley was vomitting quite a bit and in a lot of pain, but when all the meds that you have to combat the nausea and pain are given by mouth … it kind of turns into a Catch-22 situation.  

Tomorrow we head to Children’s Memorial Hospital (CMH) where Ashley will receive a blood transfusion.  This is also something that we’ve come to expect the week after “in-patient” chemo and it generally helps her feel better.   On Monday, we will also return to CMH for an MRI.  Her blood counts are still really low, so surgery has not been scheduled yet.  However, the moment we have a confirmed date for surgery we will post that information here.  You can also subscribe to receive an email notification when this site is updated if you care to do so.

In other news, some of you may know that throughout the years I’ve been involved in various philanthropic activities.   One group that I’ve been very honored to be associated with for many years is The Woodridge Junior Woman’s Club.   The group recently sent some very thoughtful and generous gifts to our home this past holiday season and in sitting down to write a thank you note I reflected on all of the great work that the club has done over the years. From preparing meals for families at The Ronald McDonald House to making homemade blankets for Project Linus, I have come to personally know many families and children who benefit from their great work.    A week or so ago, a dear friend and current board member sent me a note saying that the group unanimously voted to host a fundraiser for Ashley.   I was moved to tears when I read her note. Having been involved in the planning of many of these events in the past, I know how much hard work goes into them and I am so thankful to all of the ladies who are willing to work so hard to host this event for Ashley.  Detailed information can be found on the Upcoming Events page of this website.  I’m personally very excited about the event. Many years ago I took an extended trip to Ireland and fell in love with the culture and traditions.  I’m really looking forward to seeing the Irish Dancers and Bagpipers perform at the event.  It sounds like so much fun and we hope you will join us!       

Thank you so much for your continued prayers.  Much love to you all!

It’s been a very busy week here and we have lots of news to share!

Ashley will be scheduled for surgery in the coming weeks and there will be two surgeons leading the surgical team: Dr. Alden, the neurosurgeon who previously operated on Ashley in September and Dr. Maddalozzo, an Ear Nose and Throat (ENT) surgeon.   

On Tuesday, we met with Dr. Maddalozzo, the ENT surgeon.  We had never met him before so this was his first opportunity to examine Ashley and discuss the surgery with us.  He explained that the tumor has gone down in size by approximately 50%.  He also explained that an incision would be made across her chest since that is where the bulk of the remaining tumor lies.  Dr. M. recently operated on another little boy with a Rhabdoid Tumor at CMH and had a very successful surgery. 

On Wednesday, we headed to the hospital.  Our day began with a quick check of vitals in the heme/onc clinic.  We were so pleased when Ashley weighed in at 10.4 kgs.  She’s still tiny, but at least she’s back to the weight she started at when she was diagnosed. After getting vitals checked, we headed over to a satellite location to meet Dr. Alden.  He was really pleased to see Ashley.  He’s seen her at her worst, so he was definitely happy to see the progress she’s made. Dr. Alden explained to us that when he operated on Ashley back in September he tried to “clean out” as much of the tumor in the back of the neck as possible with the expectation that this day would come.  So the plan is to get the remaining tumor from the front during the next operation.

We then headed back to the main hospital and were admitted.  It took a little while to get chemo going so we were able to take Ashley with us to the cafeteria for dinner.  The hospital was bustling with activity so we were able to see a lot of our good friends.  You can totally tell Lindsey is my daughter, because she asked if we could go to the gift shop and buy balloons for all the kids in the hospital.  I told her that we could get ONE, and she decided we would get one for Ashley’s special friend Gloria who has neuroblastoma and shares a birthday with Ashley. 

We don’t have a confirmed date for surgery just yet.  We should have one by next week.  Ashley’s blood counts need to recover after the current round of chemo, so most likely within the next 7 to 10 days. I’ll be sure to let everyone know when we have a confirmed date. Thank you for checking in to see how Ashley is doing and for your continued prayers!

I am so excited to be posting this message!!  First and foremost, I want to thank the lovely Madeline D’Amato of Better in Pink for all of her hard work.  Most people who know me well, know that I love “pretty things.” I became a fan of Maddie’s work a while back when I was scouring the web for “pretty” blog templates.  Recently, when I came to the realization that I needed a new website Maddie kindly offered her services. She is so incredibly talented and I am so grateful for her kindness!

I feel like I have so much to catch everyone up on!  Ashley’s treatment protocol is a 52 week plan and she is currently on Week 9.  We’ve fallen behind schedule twice … once in November when Ashley’s intestines were very sick and she ended up in the hospital for three weeks and a second time in December when we ran up against some scheduling issues at the hospital.   

This week, Ashley is scheduled for a “light” round of chemo … which simply means that our home health nurse comes to our house and administers Vincristine through her PICC line.   Vincristine is one of the chemo drugs that Ashley tends to tolerate pretty well.  If all goes as planned, this will be the first week since September 18th that we have not had to make a trip to the hospital.   So I’m keeping my fingers crossed!  

Next week, Ashley will be admitted to the hospital on Wednesday, January 14th for an “intense” round of chemo.  All the fun begins with a clinic visit, followed by intrathecal chemo (i.e. chemo in the spine), and then over the course of three days she will receive five chemo meds through her PICC line, all of which tend to make her pretty sick for up to a week afterwards.  The good news is we usually get to go home by Friday afternoon. 

During this hospital stay we will also meet with her oncologist and a team of surgeons.  Ashley recently had an MRI and upon reviewing it her oncologist, Dr. Morgan, felt that the tumor has reduced in size considerably.  She consulted with, Dr. Alden, the neurosurgeon who operated on her back in September.   Dr. Alden feels that he can resect (remove) the remaining tumor.    So on Wednesday, January 14th we’ll sit down with the oncologist and surgical team to discuss next steps.  We’re completely thrilled and a little terrified all at the same time. This is everything we’ve been praying for. 

Ashley has also made great strides in her development.   During the month of December, Ashley was evaluated by a developmental therapist, a speech therapist, a physical therapist (gross motor) and an occupational therapist (fine motor).  The recommendation was for her to receive developmental and speech therapy once a month,  occupational therapy once a week, and physical therapy twice a week.  Ashley began receiving services this week and I think her therapists have even been surprised to see how much she’s progressed since they evaluated her last month.  She’s on the verge of being able to sit up on her own.  She’s now able to lift up both of her legs slightly.  She’s using both of her arms a lot more. One of her favorite activities in the hospital is now working with the art therapist. It’s so incredible to look back and remember the little girl that would just lie in bed and whimper.   Back then I had no idea if she would ever walk again, and now I know that with the support of our incredible team of therapists Ashley will continue to make leaps and bounds in her development.

Many thanks for your continued prayers, love and support.  Thank you for visiting our new site!

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As a reminder, blog entries written prior to January 2009 can be viewed here:  http://theconstantinofamily.blogspot.com/