340 Days Ago

My first blog entry was 340 days ago.  It wasn't a happy blog to start, but I felt an overwhelming need to keep our friends and family as up-to-date as possible with the diagnosis and treatment of Johnny's cancer.  I never thought there would be a more difficult day in my life after that, but I was wrong.

The worst day came a week ago yesterday, Sunday, June 6th, 2010, when we had to tell Quinn and Jake that Johnny was now considered "terminal".

We have been completely honest with the boys from diagnosis until now.  They have know the ups and down of the whole process.  We actually found out at the last chemo session that we were in "salvage" mode.  Trying to keep the lymph nodes in check for as long as possible.  On his last scan I explained that there are many lymph nodes involved in both the upper abdomen and chest.  As of now, nothing has shown up in the lungs, and we hope that it stays that way.

We decided to wait until the boys were completely done with school to tell them.  I feel like the moment we told them is the official end of their childhood.  They've been robbed.  They will be robbed even further.

We sat down on Sunday night after Johnny wouldn't let me stall any longer.  We had the boys sit in the living room with us, and Johnny started talking.  His monologue was absolutely beautiful and part of me wishes I would have recorded it so I could remember his loving words to our boys forever.  He first talked about what the doctor had told us, that nothing was working and there wasn't much left to try.  We still have the "experimental" option out there, but we haven't committed to that.  He then talked about how much he loves them and gave specific examples to each of them of things that he loves:  Quinn's old soul and love of the outdoors,  Jake's humor and compassionate soul for animals.  He told them that he knows we will do fine because all three of us are strong together and individually, so when one of us doesn't feel strong, the other two will carry the load for a while.  He told them both of his wishes for them in the future and his desire for them to follow their hearts and do exactly what they want to do for a career.  He wants to make sure there are no missed opportunities in their lives just because he isn't around.

Johnny talked about the potential for a miracle.  "If God chooses to spare my life on Earth, it is because I have work left to do here.  If He chooses to take me, then I have work to do in Heaven."  The calmness and reassurance in his voice was so soothing.  It is hard to explain, but a real calmness surrounded the boys and me.

I wish I could say I was strong and stoic during the whole thing, but I sobbed like a baby.  I'll never forget Quinn's piercing look into my eyes asking the question, "Is this THE TALK?"  I simply and silently nodded as Johnny continued.  I had always promised Quinn that when the doctor said he was terminal, we would have "the talk" as a family.  To see him look at his dad with the knowledge that we had limited time left was soul-wrenching.  Jake basically had the "I-told-you-so" thing going.  If you remember from the beginning, Jake thought that cancer automatically equalled dying.  I'm so sad for him that as his mommy I couldn't prove him wrong and make everything all better.  As the boys would say, "Epic Fail!"

The last thing we talked about with them was Quality vs. Quantity.  We obviously want him around as long as possible, but at what cost.  Johnny told them that he would much rather feel good for 6 months and quit chemotherapy, than to feel awful for 9 months and continue chemotherapy.  Fortunately, they are both at an age that they could comprehend this concept.  As hard as it is to say out loud, I completely agree.  It is an easy concept to buy into on the days that he is stuck in bed feeling terrible.  Not so easy to buy into on the days that he is up and on the move, looking and feeling fine.

As Johnny's wife and Quinn and Jake's mom, I feel like I'm on a roller coaster.  I want to be strong for them, and feel like I do a good job most of the time.  Other times, I am a puddle and just can hold things together.  I let the boys see me cry, because I want them to know it is fine to open the floodgates and let it out.  I just try really hard to not make it a daily occurrence. 

I know we have kept this news from the majority of you for a little while, and I hope you'll forgive us.  Johnny was very specific in telling certain people in a certain order and timeframe before I put it on the blog.  That is probably why I haven't blogged in two weeks.  I couldn't think of anything else to say.

Now that I have that out of my system, I'll be blogging a bit more regularly.  I promise.

And to let you know, Johnny's lab values all rebounded this week at chemo.  His WBCs are back up to 7.  I forgot to ask for a copy of his labs before we left today, but I know that everything came back up that was low last time.  Hemoglobin was 11-ish, Platelets were 155.  Better.

He received the same chemo as last time, and was again sent home without the 46-hour infusion.  Dr. Ansari believes that there is really no use in compromising his overall health for the little (if any) benefit the 5-FU was providing.  It is the other two drugs (Avastin and Oxilaplatin) that help with the lymph nodes.

Please continue to pray for us all.  Johnny especially, Quinn and Jake, too.  Throw me in there at the end if you have a second or two extra.  My boys are the most important right now if you have a specific prayer order you follow.

We will be fine, I promise.  As Johnny continually tells us, he has the easy job. . . it's those of us who will be left behind missing him terribly that have the hard job.