Saturday, April 30, 2011

#$*!%

I decided the title to this post was not appropriate for the blog, so I will just say...I have been cussing like a sailor for the last 24 hours.

Last night, when getting Alex ready for bed, I noticed some red spots on his skin. This, along with a low grade fever, and some bruising, led me to believe that there was something wrong.

I couldn't even dial the phone last night. Eric called the on-call oncology doctor, and we were told to come in.

The tears started, and really haven't stopped yet. I don't know when they will.

Alex was diagnosed with Leukemia. Most likely a "relapse" of the Lymphoma he had before. We will be meeting with the bone marrow transplant team on Monday, to see what we need to do to find Alex a bone marrow match. I encourage all of you reading this to go to http://www.marrow.org/, and sign up to be on the registry. Even if you don't help Alex directly, you could help another family in need of a bone marrow donor.

The doctors say that the odds of surviving a relapse are "not good" - but this is Alex we are talking about - the strongest warrior I know. Since the odds aren't zero, someone survives - and that WILL be our Alex.

So, now you know the bad news. The good news is that there don't seem to be any leukemic cells in his spinal fluid.

The weird news, is that the pathology reports are coming back that this is a B-cell Leukemia. NOT T-cell, which is what we would expect in a relapse.

So...what the hell does this mean?!? Either the cure caused this new cancer, or it is unrelated, or the T-cell lymphoma was actually T and B cell...who knows at this point.

Our brave boy is stuck in the hospital again. His little sister is home without her brother. Eric and I are just sort of on automatic.

Thank you all for your kind words and support. This has come out of left field...he only had 5 months without Chemo, and we had JUST celebrated his "end of chemo" party 7 days earlier. During that party, I started to have some suspicions that something wasn't right, but I just chalked it up to being over sensitive. I wish that was true.

Right now, Alex has a fever of 103.0, and is being hydrated to try and flush the leukemic white blood cells out of his system, so we can transfuse red blood cells. His body has too many white cells, and if we tried to give him more red cells, his blood would become sludgy. So, we transfuse platelets, and monitor him closely to make sure his blood pressure, and oxygen levels maintain a good level, while we wait for the white cells to drop, so we can give Alex more hemoglobin.

I know there is more to say, but my brain is shutting off, and so I will close my computer, curl up in the hospital chair, and try to get some sleep.

We will know much more on Monday, and I will share his treatment plan as soon as we know what it is...

CANCER SUCKS

6 comments:

  1. Post what you need to! I know it doesn't really help and may come across as empty but we love you guys. I wish I could say or do something better but I know I can't.

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  2. Oh, I am so very sorry to read this, I was so glad this was all behind him. Please know you are in my prayers! Barbara Widder

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  3. I cannot even imagine how difficult this must be. Tell Alex his cousins in Oklahoma are praying for him!

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  4. I have no words... I had hoped this was all behind you forever.

    I signed up to be a marrow donor last year and have just challenged all of my facebook friends to do the same in Alex's honor

    Michelle Windsor

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  5. I know you are still waiting for chromosome reports, but if it's ALL doesn't that give him just as good of a chance as all the rest of our ALL kids? ALL "cure" rates are nearing 90%. I don't understand why that makes his odds any less.

    I think when I was told that Eli had relapsed, I was more shocked and broken than the original diagnosis (I didn't even know it was possible). My pain lasted for only a few days until the diagnosis was proved wrong by the chromosome reports. My heart breaks for you. For a few days, I've been there.

    When your head clears, and your heart stabilizes, call me. The nurse in me longs to know the details, and the friend in me longs to help heal (I promise you wont need to help me mourn- I'll help you).

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