1 Day In…

JLK was up before me this morning. I must say I am really enjoying sleeping with her and having her all to myself for those few hours at night. We talked before bed last night that tomorrow would be our first day of radiation. And that radiation was what all these appointments were building towards. That the drs were going to use something called radiation to shrink her tumor.

When we first found out she had a brain tumor we were geared up for a fight ready for chemo and to be in this for the fight of our lives. I was ready to tell her even though she didn’t want to go to the dr or take meds she would need to in order to save her life. But then we were told the words I will never forget….incurable…It was just like people say, like being punched in the gut. I was wearing Charlotte and standing and just stumbled onto Tony and screamed “oh my god oh my god please no”…..I think part of me somewhere deep inside is still screaming like that every moment of every day.

So last night was a moment that struck me not being able to use the words I had rehearsed that we are going to save you….but only saying to shrink the tumor. She was playing with her new iPad while we talked I think it helped her to be able to absorb our conversation better. With princess sounds in the background I explained to my daughter that the tumor in her head has a name…...cancer.

This morning was a hard one for her. She cried a lot and was scared. She told me she didn’t care if she saw double and had headaches…it’s ok mommy. I told her when this all started there would be things she had control over and things she didn’t. She can choose what form to take her steroid in, but going to radiation is nonnegotiable.

We were taken back to pre-op and she didn’t want to talk to any of the drs. I told her that was another one of her choices…It was hard to allow her to be “rude” to an adult but I also feel like it’s important to give her some semblance of control with the things that don’t really matter. But she is 6, so she did eventually talk… asked if she could have a popsicle when she woke up!

The radiation charge nurse was amazing. She made me seem tall and meek!  We talked about different options and I reiterated that my husband and I are confident in their care and trust them. It’s a good feeling to know you are in the best hands when you are desperate for help. So if they believed one option was best we were on board. The nice thing is, it’s a small team so we will all get to know each other over the next 6 weeks.

Again JLK cried quite a bit and was pulling at and even trying to bite my nails. It’s so hard to try to explain to her what’s happening in a non-scary way.  I just held her and whispered that it was ok to be scared and ok to cry…that it’s important to let the tears out so the smiles can come through.

They wheeled her on her bed though the hallway to the Stanford Cancer Center and we went back to the radiation room. It seemed filled with doctors and machines. I will be honest here in saying it was frightening for me…an adult not going through this. I can’t imagine what it was like in her little mind.

I got to pick her up and place her sitting up on the table. The amazing nurse explained that she would be going tube to tube to put the medicine in. She allowed Jennifer to help with this part of the process or mommy could…She chose the nurse which was positive since it meant she trusted her…even though the rest of the morning had been a struggle for her with the medical professionals. Sitting up on the bed she leaned over into me. The nurse was right there with us…supporting me supporting her. I was telling her to dream about the time we all went to the spider park…when she and Jonathan raced to the top of the web and Nicholas just sat and ate. Jennifer was whimpering…she was genuinely scared and although I was 100% there with Jennifer I could still hear the nurse whispering to me. She was telling me to hold her tight, to support her head and her neck…to hold her like I did when she was a newborn. And I did. It was so easy to go back to that time with her when all she needed was me and warmth to be safe. Quickly she was asleep. I wanted to hold her and not let go, but I laid her down on the table and whispered “I love you buggers” in her ear and walked away. I actually felt like I was going to throw up.

I could feel the eyes on me. Watching to see if I would cry. I didn’t. I felt like if I let one tear shed I would never be able to stop. I have the rest of my life to grieve and hurt. Now is my time to push on and push forward. To pull everything together to take care of the 6 of us the way a mother and wife is supposed to. The head radiologist spoke with me for a moment then the charge nurse Laura came and got me to talk again. Somehow she wasn’t hardened against this whole process. I wasn’t just a patient…I was Jennifer’s mother. She wanted me to see every aspect of radiation to really understand and know how it works.  Even see if JLK could possibly do it without being under general.

The answer quickly was no flipping way. She was lying on a table with her head tilted backwards. She had to be perfectly still. The measurements are so precise to a millimeter. And then they have a mold of a blue hardened mesh made to perfectly fit her beautiful face that is placed on top of her and bolted to the table. Seeing her like that I felt like I wanted to pass out. And run to her. Take her away and rock her again like the newborn. But I couldn’t because radiation is a nonnegotiable.

Today was a longer time in radiation than it will normally be since they are still perfecting the exact measurements to blast the hell out of that tumor. So I got enough time to call Tony alone. I miss him so much. With him I am safe and I could cry..I didn’t have to explain anything. I could just tell him today was hard and he was there with me…with us. I don’t know how he does it. Works all day and takes my calls. Then goes home to my parents and is Dad and Mom to our boys. I am so lucky to have him.

Recovery was easy. By the time I walked back she was almost completely awake (and wanting a popsicle!) We got outta there and went with Fairy to Zest bakery where she feasted on gluten free goodies.

Gluten Free Pizza @ Zest Bakery! Yum!
Gluten Free Pizza @ Zest Bakery! Yum!

I was warned over and over again that she might be tired or feel sick. But she was a total champ. We went and played in the backyard of Fairys house.  Just JLK and I. It was only a few minutes but just playing “diner” with her and coloring was wonderful. Then we got on the ipad to talk to Daddy and her brothers. It was adorable how they talked to each other. Nicholas (our 2 yr old) said I love you to her. I have never heard him say that to anybody before. (how will our boys survive all of this???)

For dinner we had a picnic on the floor with Fairy. We had girl talk. The kind of thing I should be doing for years to come with her. We talked about boys and told silly jokes. And we laughed….oh how we laughed. It was wonderful. And so damn unfair.

Picnic and Girl Talk!
Picnic and Girl Talk!

Love4JLK was talked about today on 2 different radio stations. We heard one of them. Jeff Garcia on KNBR.  (In case you  missed it, click here) I am honored so many people are seeing the beauty in our daughter and wanting to reach out. It’s both heartwarming and gut wrenching. It’s all becoming real.

Today it hit me. My daughter. Our first born. She has cancer. There is no cure. This is real.

oh my god oh my god please no
oh my god oh my god please no
oh my god oh my god please no

2 Responses to “1 Day In…”

  1. I am just now seeing this! Oh my God…my heart aches for you. I just started following your blog a few months ago. I’m not sure how I found it on my FB page, but I am so glad I did. You inspire me! And I have ALWAYS had a deep passion for pediatric cancer and the families living through it. God bless you all! I hope one day I can help make a difference…maybe raising money or volunteering…something…

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