Share Babyortyl

Monday, August 29, 2011

Monday's run to CAM.

My my prediction was right on, smiles on the way to CAM. Smiles and another really good day!

Greg and I got to the hospital very early this morning to catch rounds. We knew that would be our opportunity to catch all of Oakes' doctors at once and get a good understanding of what Radiation will be like, and what we should prepare for for the next 5 weeks or so. We got many questions answered and I think left rounds feeling more informed, more prepared and a bit less scared. One of the most significant things that we learned was that the progress that Oakes made at the end of last week along with over the weekend surprised everyone a bit this morning. So much so that they are going to repeat his lung biopsy before Radiation begins this week to see if there has been a big change with his antibodies that would explain his improvement. Of course, praying for amazing, miraculous news, but feeling OK with moving ahead Radiation.

Our trip to CAM was pretty easy. It took four people to get Oakes and his gear there, and went much faster and smoother that I had thought. I was under the impression that we were going through tunnels to get there, but that was not the case, we walked the same route as everyone else shuffling from Children's to CAM. I was a little nervous about that, but people were very considerate and kind of gave us the right of way. The Radiation Oncology team was great. There must have been a dozen people in the room as they mapped Oakes' lymph nodes and made his mold.

So, if everything moves forward as planned we will return to CAM on Thursday for the first treatment. Our visit will take about an hour from start to finish, but the treatment itself takes about 40 second. A 20 second X-ray on the top of Oakes' body, then an 20 second X-ray from the bottom side. The rest of the time is just set up. Then the weeks to follow we will visit CAM every Tuesday and Friday.

I did learn that Oakes will have labs drawn every afternoon, and his antibody levels are looked at weekly. The effect of the Radiation should be pretty immediate. So if the doctors see that his antibody levels take a dip, they may discontinue treatment and assume that they have had success. They can also see if his white blood count takes a dip, this would indicate that he really is wide open to all germs. I had thought that if one dipped then the other would too, but that is not the case. The ideal scenario if that Oakes' white blood cells stay relatively high, and that just his antibodies dip, in this case we would be eliminating those pesky #5's, while keeping his body healthy enough to fight any germs that he may encounter.

Thank you all for the prayers and love.
We will let you know when that next biopsy happens!

Greg rubbing his forehead on Oakes' soft and spiky short hair.

Making our way through CAM

Getting ready to start mapping those adorable little lymph nodes.

Oakes' Radiation mold. It's hard to see in this picture, but there is a place for his head to lay in, his arms, torso and legs. There were lines markered onto the mold that line up with lines drawn onto Oakes to ensure that he is always in the same position for treatment and the X-rays always target the same precise spots on his little body!

His mold sitting in front of the X-ray machine.

Walking across the bridge from CAM to Children's after a successful field trip.

All bundled up on our walk back, acorn hat and all.

Resting back in his room. Blue ink, covered by tape so it doesn't wash away. His transplant incisions is completely healed now and no longer needs a bandage. It looks amazing!

Sleeping like an angel baby!


  1. Oakes looks SO GOOD. He looks fantastic! What a great way to start the week and to head into radiation. I will be radiating all sorts of love and hope and faith your way over the coming days! Great pics, thanks so much for sharing.

  2. Agreed, he looks so great! Thank you for sharing all the pictures. I love Pappa rubbing heads with Oakes, so dang cute...
    At church on Sunday I heard this...may the Holy Spirit INFUSE your body for healing. This is my new, specific prayer for your Oakes. And many more to bring support and peace to the rest of you Mighty Ortyls!
    From The Gabris group with love :-)

  3. Well hello handsome! Oakes is looking incredible. Woot Woot! Greg and Oakes look so much alike to me. Must be the hair. Quite a pair of boys you have there :). Tonight's update is such good reading! You have such a way if making everyone else feel so good about Oakes. I think it goes without saying that I'm hoping this latest biopsy reveals some amazing results, but I will say it anyway.
    Tell Oakes I had such a good run yesterday. I was thinking about him and I know it helped. Hopefully my good thoughts will come back to him.

    Good luck on the biopsy, xo

  4. My first thought, much like the above, is that Oakes looks fantastic! Seriously, he looks great, ready to take on that radiation, and get rid of those crappy #5's. As you wrote yesterday, we are all sending thoughts of strength, patience, and health along with our deep breaths. Thanks for sharing with all of us.

  5. That first picture put a BIG smile on my face. He looks sooo good!!! I noticed right away that the dressing was gone, and it's healing so well.
    Fantastic news that the doctors are pleasantly surprised at how well he has done. What a fighter!! Will be thinking of you and your trips to CAM in the following weeks.

  6. Love seeing those sweet smiles! Looks like he handled his big trip just fine. Hoping for good news from the biopsy so no radiation is needed. He is in good hands there! Praying for wisdom for all his caregivers so they continue to identify just what Oakes needs!
    Sending love,