Tuesday, September 25, 2012

Lisa's treatment plan

Yesterday was a tough day for me.  For the third week in a row, Lisa's blood counts came back showing her platelets were too low to administer the chemo as planned.  Add to that her hemoglobin is now dropping.  In a nutshell, they are now worried her counts are low because of active disease, not because of delayed recovery from radiation. I sit there stunned....active disease, ya think?  She's been having more and more leg pain since radiation ended, her head pain still exists, she needs frequent naps....how did I miss the fact that they were thinking the low counts were from radiation, not disease?   I've been in a panic for the last 3 weeks every time we miss chemo feeling like each week the cancer wins and gets another week to eats away at her body...that the disease is progressing and I can see it right before my eyes....I never even attributed the low counts to radiation....I always assumed it was disease.

Regardless of the past weeks, the team and I are now are on the same page Monday afternoon. 

Their first thought...can't do chemo...counts are too low. 
My first thought...you've gotta do something. 

Their next thought....we can do a bone marrow biopsy to see the progression of the disease.
My thought....seriously?? why?  we already know she has disease all over her body and in her marrow, what will the biopsy do besides cause pain and possible setback like last time?  Will this open up doors for other treatments? 

Their answer....no, it just reassures us.
My answer....we already know what we are going to find...we need to get creative and find something we can put her on.

After discussion and some reality checks the doctor decides to put Lisa on a low dose of a different chemo regimen making sure to remind me that we are nearing the end of the line, we are only looking to slow the cancer down, that there is no cure for neuroblastoma and we have to keep in mind that our treatment plan should be doing least harm.  Translation...this chemo could actually make things worse as it impacts Lisa's counts making her more susceptible to infection and sepsis.  I numbly nod...I know, I just don't want to accept it....I'm still hoping to prove everyone wrong and begging God for a miracle of health for Lisa and a cure for this cancer.

We progress to the infusion area and my phone- that gets no reception in the hospital- receives one text message from Bridget's mom, Louise,  that they are in ICU if we want to visit.  I leave Lisa with her nurses and go up to see Bridget.  Once again I find myself in denial and think Bridget does not look so bad despite the fact that her head is wrapped and she is hooked up to machines.  I notice only that her head bandage is adorned with a Notre Dame logo, she lays peacefully, she seems aware and offers small smiles in response to her mom's voice and other things that happen in the room.  A deacon is in the room and offers communion to all including Bridget who swallows it once it is broken into the tiniest pieces.  Louise and I chat briefly...she seems at peace and accepting of God's plan. I am torn, shattered inside, angry, unforgiving, not ready to give up, so damn mad that these children and these families have been put through all of this.

I leave the room numb and go back down to infusion.  I am even more conflicted as I watch my warrior rally and do arts and crafts and make everyone smile with her humor. I so want the happy ending we seen so often in Hollywood movies.  We've bounced back so many times it seems impossible that we won't continue to carry on.  My mind still embraces the happy ending that somehow she grows up, graduates, gets married, has babies.  Why shouldn't she be blessed with this? While I still hope, believe and wish for this, in the back of my mind for weeks now, I keep hearing a "canon sound".  For those of you who saw Hunger Games you know what this signifies.  The sound that plays in my head leaves me weary and tiptoeing through each day. I find I am holding my breath and reminding myself that while Hunger Games ends with the underdog being victorious, children still died.  The odds are against us here and I feel like I am just waiting for the canon to sound.

I pray that I am wrong and that God grants us the miracle I so desperately want.

Please continue to pray for all our cancer warriors and their families.


Jeff McKown said...

What a beautifully honest and open post.

I know there is nothing I can say to make things better or to comfort you or your family. I just wanted to leave a comment to let you know that Lisa is in my thoughts and prayers always, and that I think of you often.

You and your family are so amazingly resilient and strong - that may be Lisa's greatest blessing.

Take care.
Jeff Mc.

Anonymous said...


I cried when I read your post. I am sending up prayers for Lisa and all your family. Wish I could send you a hug thru the computer. Thinking of all of you...


Lynn Zott said...

Sending you love, and all the strength and peaceful, healing energy I can muster. xoxos to you all.

ellen said...

Your family continues to be in my thoughts. I wish for peace and comfort.

Anonymous said...

My prayers are with you every day.

Light, peace, and hope,


Anonymous said...

My heart is with you. Let me know if there is anything I can possibly do. I'll never stop praying for all of you and praying for a miracle cure.

Love, Debbie and Bob

Terri Hocking said...

I pray for healing, peace and comfort for Lisa, you and your family. I know how courageous all of you are. Lisa most of all. You will continue to be in my thoughts and prayers. We miss Lisa and your whole family. (( hugs ))

lots of love...

Courageous Kids

Anonymous said...

Linda, ( got your name from another person above)
I just read your blog today and could not even imagine what you are going through. I am a parent of the 2003 Hawks and am proud to say that our several of our travel teams and their parents will be honoring such a strong and courageous little girl, Lisa, at the tournament this weekend. I actually teach nursing down at Childrens Hospital on the oncology floor and it amazes me how vibrant and resilient those beautiful children are on a daily basis. I will continue to pray for you, your family, a little Lisa.