This was right after he was set up in his PICU room. Looking at him, you'd never know anything was wrong. They put him in a little mini hospital gown. The physician came in to examine him and then the pediatric neurosurgeon. They planned to do surgery early next morning to remove the tumor, which we were told was 10x9x6cm, taking up the greater part of the left side of his head. Fortunately, the tumor was not taking over the brain, but just pushing it aside.
This was right after Daniel came out of his 8 hour long surgery. The surgeon was able to remove the entire tumor. Daniel had a feeding tube and breathing tube placed to help during his recovery. Although he was sedated, he still responded to people's voices. I was thrilled when I came in to see him and he smiled when I started talking to him.
A few days later, the doctors discovered that fluid was building up in Daniel's head and that he had a blood clot which was preventing fluid from draining the way it should. They did a procedure in his room to draw out 120cc of fluid, but it didn't last and he had to go back to surgery to place a drain in his head and remove the blood clot.
Finally they were able to remove the breathing and feeding tubes and Brandi was able to hold her baby boy. He was real groggy for a while and slept most of the time. After waiting over the weekend to get the results back on what the tumor was, the news was devastating. It was cancer. Anaplastic Astrocytoma. A very rare and aggressive cancer that is rarely seen in babies. The doctors were not sure how to treat and are seeking a second opinion. Daniel is too young to receive radiation, which is really the only thing that could help, so chemotherapy may be the only option, but may not help at all. Most likely, they will monitor Daniel over the next few months to see if the tumor grows again and then make a decision as to how to proceed.
I finally got to hold him after a week of not having him around. It was so nice. I miss that sweet boy so much.
We have seen such a vast improvement in Daniel. He is up and playing with toys and smiling all day long now. Back to his old self. It is so good to see. He has had a few more small hiccups on the way, such as minimal seizures, but he is on medication now to control them. This is a picture Brandi sent me this morning. Daniel still has the drain in his head and a PICC line in his arm, but he is able to be held whenever Brandi wants. They are supposed to be turning the drain off today and monitoring him to see if he can get rid of the fluid on his own. If all goes well, his drain will be removed tomorrow.
Since Daniel will be in the hospital for Christmas, we thought he deserved a baby tree. Other family members had added their decorations to his room as well.
We are so grateful for the surge of support and service that Brandi and Daniel and even Mark and I have received from family, friends, and most of all our ward family. We are so blessed to all be together and here for each other during this difficult time. I know that Heavenly Father has a plan for all of us, including Daniel. Daniel has a purpose to serve here on Earth and everything happens for a reason, even if we can't see what that is. We pray that he will make a full recovery and want to thank all for their prayers and support. See Daniel's blog for regular updates on his condition.