Friday, August 24, 2012

San Francisco or Bust

We received a wonderful surprise today in being able to go home after just one night in the hospital. Yippee! That usually doesn't happen for us! So we are home still connected to IVs for nutrition and antibiotics. We continue to switch between our roles as parents and nurses.

Now on to other things...

Eek! And Aak! And Ugh! And Seriously?! As of a few hours ago I will be flying out to San Francisco on Tuesday to take Case to a consultation appointment at UCSF for radiation therapy. We will have appointments on Wednesday and fly home Thursday.

Why does everything have to happen so last minute? There are no frequent flyer tickets available and Corporate Angel was already closed by the time I found out we were going. Thank goodness we have some funds from all of our awesome friends' fundraisers and generosity!

And also thank goodness that my mom and dad will come with me. They lived there for four years while my dad went to dental school, so they are my emotional support, chauffeur, travel agent, babysitter, and best of all, my mommy and daddy! Graydon will stay in Texas with Xavier.

The actual treatment would take place in about five to six weeks. We have one more chemo to do and recover from that will begin September 4th.  The treatment is called MIBG therapy. The technology is also used diagnostically with a scanner. Case has had several MIBG scans that show bright spots where there is live cancer in his body.

With treatment, a much higher dose of radioactive isotopes are injected into his body that targets the NB cells. He actually won't feel sick or get neutropenic like he does with chemo. The big problem = his whole body will be radioactive in and of itself. He has to stay in a lead-lined room with a catheter in bed for 3 to 7 days until he is no long radioactive. Which leads to another big problem = we are not allowed to spend more than ONE HOUR with him every 24 hours. So essentially he has to stay by a room...with IVs and a catheter...while he is radioactive. He is 20 months old.

So that leaves me as a big old ball of stress, which is a huge understatement. We wouldn't not do a treatment that could save his life just because it is hard. I am just scared and my heart already hurts for him for that isolation time. We apparently will have him mildly sedated during those days.

I feel like life just keeps getting harder and harder.  There is still so much to be thankful for, and I recognize that every day. It would just be easier for me to get through all of this crap if I knew he was going to make it in the end. It feels like the biggest slap in the face to think of going through all of this as a family and to lose him in the end anyway. I guess what I just wrote defines what faith is. A belief in things unknown. I have faith; now I just hope I have the courage to do everything I have to do.


  1. Emily - It was great to get to talk with you today. Lots of prayers for your trip to San Francisco.

    I had mentioned Ethan Hallmark to you. He also had MIBG in San Fran. His site can be found at I'm betting his mom would be more than happy to talk with you. I don't see an email address listed on there, so maybe just leave her a comment with yours.

    Hang in there. And let me know if you want another "cancer mom" to chat about things with.

    Much love,
    Stacie Smith

  2. Emily,
    You've got a ton of courage. You are one great girl. Case is lucky to have you. Mary

  3. Oh my goodness!! You are so strong and amazing! We love and support you and will pray for safe travels. I am so happy your parents can be with you at this hard time. It breaks my heart thinking of him alone in a room with IVs hooked up to him....hang in there! Love ya!

  4. Emily- you don't know who I am, I am friends with Angie Lewis and I saw a link to your blog on one of her facebook posts about 6 months ago. I read your blog and was amazed at your story and strength. My youngest is four months younger than Case and it was overwhelming to imagine being in your situation with a baby. I can appreciate your situation even more now. A month ago today, my 4 year old son found my husband's pistol and accidentally shot himself in the leg. The bullet severed his femoral artery, vein and nerve. We were camping when it happened and by the time we made it to the hospital it had been an hour and forty five minutes. The doctors told me he did not look good and he needed surgery right away. We found out later that he had stopped breathing in the operating room and they had to resuscitate him. He needed a vein and artery graft which they took from his other leg. With the extent of his injuriesand how long his leg went without blood flow, the doctors told us he probably wouldn't be able to walk on it. They also told us it was a miracle he even survived and he should have bled out way before we got to the hospital. We were in the hospital for ten days on a surgery/oncology floor. After only ten days in the hospital, which were not fun, and we were so ready to go home, I left in awe at the families who had been there for months and still had weeks to go with their children who had cancer. I am in awe of you and your family. I can't begin to comprehend exactly how you feel, but I know what its like to have a child in the hospital. I am actually writing this from a hospital room right now. We did get to go home after only ten days and my boy did start walking-another miracle-but a couple of days ago my son was admitted back into the hospital because his leg got infected. We are sitting here pumping antibiotics into him and his incisions that were closed and we thought were healing are now open again. I sat here yesterday and read the updates about Case on your blog and thought of you and how much you have been through. It made me grateful for what I have and gave me some added strength because if you can do what your doing, I can do what I have to do. I hope you feel blessed through your trials, we definitely have felt that Heavenly Father has not left us alone. I am praying for you and your son. Kristi

  5. Super Mom! So glad that this might be something to help Case out, but so sorry it has to be done the way it does. Thinking about it breaks my heart. I can't even imagine if it were one of mine. Love, Support, and Prayers coming your way. Hang in there and good luck!