Today was our first full day at home and Loggie did pretty well. Her energy level is still very low and she is having trouble with the zillion stairs we have in our house. Her bedroom is upstairs it is exhausting for her to go up and down. We suggested making a bed for her on the main floor but she feels comforted in her room and I think she likes the privacy. She spent most  today enjoying the new crafts that our friends brought over to entertain her and she painted some really beautiful things. Logan is artistically talented. She is creative and it is nice to see her relax and enjoy an activity.

  Today she drew a picture of our family. It was simply titled ‘The Lays’. We were all smiling and even our little dog looked happy. I couldn’t help wonder if she this picture is her way of telling us she hopes for those happy smiles to return to all of our faces soon.

I ventured outside of the house and in to the world today. Well, I went to Safeway if that counts.  It felt so foreign and strange to do something as simple and normal as grocery shopping. I couldn’t help but stare at the other families. I am pretty bad for staring at people at the best of times but today it was different.  I was in  awe and amazed that life could be carrying so normally for so many people.

I wondered if any of them knew the same depth fear and sadness that I know and I wondered if  they did, how they carried on. I wondered the aisles and in the end left with nothing. We ordered take out.

I cried a lot today. Not uncontrollably or in front of Logan but I did cry.  I guess I have moved through the angry stage into sadness. Denial came and went a long time ago, or maybe is last 3 years have been. I don’t know. I am hoping for acceptance but I just don’t know how it will ever be possible to accept this reality. It all seems so unfair

I was stronger with her diagnosis and her previous relapse than I am now. Logan was too. She seems a different to me these days. Exhausted- frustrated and absent. I know we have to get through this and find  strength. Its only about to get harder. Treatment hasn’t even begun. These days  in between are agonizing. We are just waiting, worrying, giving so many medications and caring for Logan’s  every need around the clock. Basically, the days just never seem to end.

I am working on having patience, trying to remain optimistic and am watching for signs (from anywhere) that we are on the right path.  

  Who knows if we are,but I can’t seem to get this little sign out of my head or the warm fuzzy feeling that comes every time I think of it.

Last week, when we were still in the hospital I had a conversation with my mom.

I have doing a lot of research on Logan’s tumor- mainly treating it with the chemotherapy agent cisplatin . Logan received carboplatin as her initial chemotherapy as was diagnosed and she responded well – the tumor was stable for almost 2 years. The last round of chemotherapy that she has a completely different family of drugs- and obviously that didn’t work.

Cisplatin is Carboplatin’s  big sister and basically she is kick ass. They are from the same family but Cisplatin is much stronger than Carbo. My gut has been telling me for some time that if Logan responded  well to Carbo then it would only make sense that she would respond to the stronger version. The only problem is that although cisplatin could be more effective, much more toxic and comes with a lot more side effects. My oncologist agreed that it may be worth a try but any information we could find was very limited and the results inconclusive. She told me that we needed to find at least a phase two study from a reputable source to support us making the decision. So like a dog with a bone, I have been relentless in searching. Staying up all night reading studies and racking my brain trying on where to look for these trials. A few nights ago, as I was frantically  reading online I found ‘the study’ I was looking for.

The trial I came across using Cisplatin was not only a phase 2 trial, it also highlighted a case of an 8 year old girl with similar metastasis and pathology as Logan’s tumor. It met all the criteria, published journal of clinical oncology (reputable) and the research came out of the National tumor institute in Milan Italy. BINGO.

ANYWAYS back to the conversation with my mom. She started chanting that she wished we could get a ‘sign’ so we would know that this chemo was in fact the right protocol for Logan.

Irritated and exhausted I angrily shot down her need for a universal manifestation of the answer. “Enough” I replied to her “We/ I have to figure this out on my own- there is no ‘sign’ that is going to come falling from the sky telling us that things  will work out. OBVIOUSLY, if that was going to happen, it would have already”

I could tell I hurt her feelings and that she was upset with me, but I didn’t care. I had too much to think about already.

I left the room. I needed to gather my composure and take a bit of break. We were being moved down to the oncology ward in a few hours and I needed to prepare myself to enter the ‘cancer world’ again.

Fast forward a few hours and it was time to make the move to our new home. The porter was called and I was surprised that when she arrived she was an old lady, very petite, late 60’s with bobbed gray hair and a thick accent.

  Somewhat annoyed with her inability to navigate the bed, I offered to help. She welcomed my offer and as we weaved the bed down the hall she said this to me.

” Gosh, Sometimes these hallways remind of the narrow streets in the town I grew up in, in Italy”

I almost fell over.

“What did you say?” I said to her. 

“Italy, dear- where I grew up, Have you ever been- you should go one day, it is beautiful?”

Baffled I couldn’t even answer- It had to have been a simple coincidence. This wasn’t a ‘sign’. It couldn’t be.

I didn’t say a word to Jared about what happened with the porter. He’s not really into all that’ hocus pocus’ as he calls it and I wasn’t really in the mood to talk. Instead we drove in silence to get some dinner for the crew. He could tell that I was upset and obviously rattled about something but he didn’t ask. Then, just as we were about to turn into the hospital something happened.

It was so blatant that I literally screamed HOLY SHIT!

Jared slammed on the brakes. “What?” thinking we were about to get hit by a car or something. I started to cry and pointed out the window in disbelief. Right there at the corner of Oak and 14th ave in the transit shelter was a giant poster enticing travelers to Europe. It read ITALY FOR LIFE it read.

I couldn’t deny it- it was definitely a sign.

Now our questions are not the choice of chemo- the choice is clear. 

Now we wonder should we be holding off on radiation? Should  this ‘Italy’ chemo come first? Can she handle chemo right no-she is so weak and fragile?

Will she be the same child she was before after radiation, will I regret it?

What is the right answer and how do I make it? Can I please have some more f**ing signs?

Everyone tries to comfort me by saying that there I can’t make a wrong decision. That because I am making them from the very depth of  my soul but as a mom, and faced with this unimaginable choices  how can I not second guess yourself.

I look at Loggie, she is so innocent and trusting of me.  No question, she believes her mother I has the answers and I will do the right thing for her yet as I sit her and type these words I know, I have no answers at all.

And maybe that is kind of the point. There are no answers and I may never be clear on what the right choice is.

I don’t know, maybe this is what it means to have faith.