June 8, 2013


I am assuming that everyone that reads this already knows what is happening.  I will not pretend that I have some "audience" out there that has been waiting 2.5 years since my last post here for an update.

We had a good run there.  I didn't update for years because there was nothing to update.  I had the same complaints, worries, and concerns as every other mother out there, and that was nice.  It was nice to not have cancer be a part of our everyday lives.

However, here we are again.  As of this post Madeleine has been inpatient at UNM for 25 days.  Early this year we learned that the tumor was growing.  A biopsy told us that it was 99% ganglioneuroma (the benign form of neuroblastoma).  We celebrated.  Madeleine had to have surgery to remove some of the tumor that was compressing her nerves and causing her pain and weakness.  After the surgery we celebrated again, thinking that this was the last surgery, the last hurdle.  Six weeks after the surgery things started to go bad.  The pain returned, Madeleine had no appetite and was losing weight, and she couldn't walk more than a few feet without crying.  An MRI showed that the tumor had been growing aggressively. It was given a label:  Relapsed neuroblastoma, stage IV.

There is disease in her knees and in her bone marrow as well as the primary tumor that has grown up her spine and into her chest cavity.  The tumor is encasing her renal arteries and aorta causing her blood pressure to be very high (this is now under control with medicine).  There is involvement in her left lung, and perhaps her bladder may be somewhat compromised as well.  There was also a spot on her pelvis which was surgically removed and biopsied.

Madeleine is now recovering from some high-dose chemotherapy (doxorubicin, vincristine, and cyclophosphamide for those that have asked) - her oncologist went off-protocol and started her on what would normally be cycle #4 of chemo to attack this thing as fast as possible.  Her white blood cells are slowly rising.

A few days ago it was discovered that she had fluid in her left lung, and it was drained after she started having some respiratory distress.  The fluid is blood and neuroblastoma cells.  The tumor has invaded her lung and is causing a bleed.  Subsequent chest x-rays show that the fluid continues to accumulate - although possibly not as fast as it did previously.  This is currently the most serious and pressing issue.  We will speak with the surgeon hopefully this weekend to see if anything can be done surgically. 

Madeleine's chances of surviving this thing are not good.  Stage IV relapsed neuroblastoma offers a very poor prognosis, coupled with this bleed in her lung is even worse.  She has perhaps a 25% percent chance, but that number is pretty nebulous as this is an extremely unique tumor (or so we are told over and over again).  This has all happened so fast. 

She will not, unfortunately, be leaving the hospital any time soon.  If the lung can be stabilized then we will remain inpatient through the next round of chemo which is coming up fast.  After that the plan is to get her to Denver for a stem cell harvest.  They don't do this at UNM.  All of this also sort of depends on the results of an MRI that I believe she will have next week.  If the tumor has continued to grow in spite of the intense chemo than it may be best to stop treatment altogether.

For now, Madeleine's appetite has returned and she no longer has any nausea.  She is smiling and joking and sort of back to her old self.  For today, we will hang on to this.  We can only take this thing one day at a time.  


Anonymous said...

oh god, oh god oh god

Cristina Varela said...

You are all in my prayers. I'm sure it's not easy to write this, your strength is amazing and Madeleine's is too. All our love to you!!

Anonymous said...

Amber, You and the family are in our thoughts and prayers.
Friends from Oakhurst.

Anonymous said...

Amber, please know how many people love you and are praying and supporting you in their hearts. Our family talks of you daily and we are all so amazed by your strength and courage, Madeleine's too!