Thursday, July 27, 2017

Getting some answers...

Today was an extremely busy day! Starting at 7am with a constant stream of doctors, nurses, specialists, therapists, social workers and case managers. There seemed to be a line of people waiting outside her door, as one left another entered. This went on until close to 11am. Cydney was set to get her Port a Cath inserted today, as well as a baseline hearing test and MRI.

Yesterday and today we had talked with Oncology about their plan of attack for her Cancer Treatment. We learned her specific type of cancer is a Medulloblastoma, subtype Sonic Hedgehog (SHH). The standard of care is to have 7 weeks of Chemoradiotherapy, in which she will go to 13 days of radiation on full brain and spine and 17 days of radiation localized to the tumor bed along with administration of one Chemo drug Viscristine once a week.  This phase is followed by 4 week rest period.

The next phase is 9 Cycles of Maintenance Chemotherapy spanning over 44 weeks. Totaling 55 weeks from beginning to end of treatment.

There are two dosing cycles she will follow:
             A is 42 days of Cisplatin, Lomustine and Vincristine
             B is 28 days of Cyclophosphamide, Vincristine and Mesna
The cycle schedule is AABAABAAB

It is planned for her to start radiation in the next two weeks.

She will remain in Phoenix for at least the next 8 weeks while she undergoes the radiation and rehabilitation. Once it is time to start the Maintenance Chemo we hope to be able to be back in Tucson except for the days she needs to come to Phoenix for treatment. Some of the chemo treatments will require a one to two day hospital stay as further tests and observations will be needed.

Today was a hard day for Cydney, due to the Port a Cath scheduled she was placed on NPO as of midnight Wednesday night. I'm sure she was very hungry when she woke up. The procedure originally scheduled for 1230pm finally took place around 3pm and she was done and back in the room by 5pm. She was also scheduled for an MRI at 6pm, which took place closer to 730pm. Cydney was finally able to come off NPO at 6pm and got a feed in before the MRI. After the MRI she was brought back to the room and provided a new air bed. She had the most relaxed face and look of comfort she has had all day. With a huge sigh and smile she seemed to melt into the bed and relax.

Time seems to drag on and at the same time, it is hard to believe that July is almost over. To think about what has transpired in the last month is mind numbing. For Cydney to go from one day being a happy girl running around, jumping in the pool, telling me silly jokes that don't make sense to being in a hospital bed unable to move or talk is too much to comprehend.

It is uplifting to see her make these small improvements each day. Over the last two days she has started to hold her legs up in a bent position and move them side to side on command. Her grip strength in the right hand in returning and she can do a slight squeeze on command now. As long as she is calm and not upset we can get smiles from her to communicate Yes or No.

We are moving past the first hurdle and preparing to tackle this next one, putting up the biggest fight we can. It is daunting to think of all she still has to face, taking it a day at a time makes it more manageable.

It is time to make a long term plan on getting Nathan and Lily back home as Nathan prepares to start school.

Thank you for all the prayers and continued support! We could not have handled these last few weeks without everyone's help.
Getting some fresh hot Desert air after three weeks inside!
She took a deep breath as we walked out and she soaked up
the warmth of the sun.

I'll love you forever,
I'll like you for always,
As long as I'm living
my baby you'll be.


  1. Praying for you all and that you have a smooth road with a great outcome ahead. Xo.

  2. ❤️❤️❤️❤️❤️❤️❤️Oh my lady l am so so happy she has a treatment plan. And that that smile is coming back. Please let me know if I can do anything.

  3. Yay for smiles! Sounds the treatment plan will be rough, but I'm sure it's nice to have a way forward. Praying for you all!!