On June 1, 2010 our two year old, "Little Air Bear," was diagnosed with Childhood Acute Myeloid Leukemia (AML) Type M7. After enduring 146 days at Primary Children's Hospital, Erin is now in remission and living a full life at home with our family. Her strong will and constant happy smile is an inspiration to us all. Through our difficult circumstances we found great strength and peace in our Savior, Jesus Christ. Thank you for checking in on us.

Friday, November 12, 2010

Unfortunately . . .

Unfortunately . . .

That was the first word the Infectious Disease team said when the three of them came to visit me this afternoon.  Talk about setting me up for the worst.

They continued, "Unfortunately . . . the Pathology lab doesn't have results on the biopsy because the tissue was injured or crushed." 

Um, what?

Yes, the tissue is ruined and the Pathologists cannot do whatever a Pathologist does to look at a tissue sample.  They were supposed to let us know if any Leukemia cells are lurking around in the Cellulitis sore.

In tears I listened and tried really hard to comprehend what they were saying.  In a nutshell: we don't have any results.  Nope, no results.  But we do have two little holes on her poor sore little lady part and we're just praying that they don't get infected when her immune system hits zero next week.

I am really frustrated and scared and worried about what is going to happen.  I really had big hopes that we would have an answer to what is inside the Cellulitis and how we can combat it.  We are back to where we started. 

There is a little hope though.  The second biopsy (they took two) was sent to the Microbiology lab.  It has been sitting in a culture and it hasn't grown anything in the last 48 hours.  No results there either.  It is good that some awful bacteria or fungus isn't thriving there.  It is possible that in the next week or two something else may grow there.  So, they are not going to throw out the culture, but they are going to let it keep on trying to grow something.

The hard part for me is that I wanted an answer.  The Oncologists, Gynecologist, and the Infectious Disease Team are all baffled.

I'm sure you are wondering what we are going to do.  I cried.  It was all I could do at the moment.  Marie Steele (a fellow AML mother) comforted me.  By the way, she is wonderful.  It is such a blessing to have her here in ICS too even though it is through these dire circumstances.

Right now, we plan to just go ahead with chemo round number five.  Her immune system is going to get to zero and then we'll spend the next 3 or 4 weeks trying to keep the Cellultis from flairing up.  It is so sensitive and it seems to get better and then flair up randomly.  You are probably all sick of me talking about this Cellulitis sore.  It is under control right now, but if it gets out of control lots of bad things can happen like blood poisoning and dead tissue.  So, that is why it is a big deal.  If it is still there when we are done with this round of chemo, then they will do another bigger biopsy.  They want to send the results to a lab in Seattle that does this thing where they look at the DNA in the biopsy and then they know exactly how to fight the infection. 

Erin receives her last ARA-C Chemotherapy tonight at 2am.  She is doing alright tolerating these incredibly high doses of chemo.  She told me tonight that her stomach felt yucky.  She is on Zofran for nausea, and I'm glad she hasn't thrown up.  She is happy and chipper and she didn't have a clue that her mother was such a mess today.  She really is resilient and it's nice knowing that she won't remember much of this trial.  This morning we played in the halls and watched our friend Ethan ring the I-am-finished-with-chemotherapy-bell.  It was an emotional moment and I tried so hard to not cry when we all cheered and sang for him!  He has been here off and on for 13 months!

So, despite the "unfortunately" news, things are good.  I've cried enough tears today to last me a week, so hopefully I'm all dried up for awhile.  These last 5 months have been so long and we feel like the world has stopped for us.  Everyone is still moving on, but we are stuck back in June when Erin was first diagnosed.  Erin has spent 119 days at Primary Children's.  No one should have to do that.  But, we are near the end.  It is in sight.  I know that Heavenly Father loves us.  He loves Erin so much, and I'm thankful that He has shown me how much He loves Her.  This too shall pass.  In the long run, it will be but a small moment.

3 comments:

  1. I'm so sorry Jilly. I hope the second biopsy works. I am happy that this is Erin's last round. Maybe during the Holidays she will be well enough to have a play-date with Tessa! We think about you all the time. You are amazing. Give that baby a smooch from the Henriods. This has been a battle well fought and we are so proud y'all.

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  2. I am in tears at the moment. You're right, it will be but a small moment, but this moment right now is long for you guys. You have weathered it so well. I can't wait for Erin's turn to ring that bell.

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  3. Two months before we found out Skyler had leukemia he had a lump on his jaw bone that we thought could be cancer too. He went in for surgery to take a biopsy of it to see what it was. They were supposed to send half of the sample to microbiology and the other half to pathology...unfortunately the half that was supposed to be sent to pathology didnt make it there, they had thrown that part out. So Skyler had to go in for another surgery because they had thrown out the other one. This second surgery that he didnt even need to have left the left side of his lip lazy so it didnt move right. So I can understand your anger because I have been there and it sucks. Im so sorry you have to go through this and you still dont know. I will pray extra hard for little Erin, and for you. It was good to see you the other day. I hope you guys can enjoy the time you have at home!
    Crystal

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