PET scan and a postive change

Yesterday was a LONG day. Twelve hours from leaving home to getting home.

We started our day at 4:00am to try and convince Jackson to eat something before his cutoff from solid food at 5:00am. After falling asleep holding his bowl, he was able to stay awake long enough to get some food in his tummy.

A few hours later, we dropped off the baby with my mom and got on the road.

Only to encounter the WORST traffic we have seen all summer. The highways were at a standstill in every direction. So frustrating but we tried to stay positive because we knew we had a long day ahead.


{Traffic}

We finally got to the hospital and got into the children's building. We had to wait awhile before even getting checked in and we had to wait more after. They were a little busier than usual.


{Reading while waiting}


{When it was time to leave, Jack said "Thanks for the ride firetruck!"}

Finally, a tech from radiology came to get us and a nurse from the pediatric floor came with us so she could access his port (we learned this week not all medical professionals are comfortable accessing ports so we were glad she was with us). It was such a weird situation--the tech took us to the tiniest, barest room right outside the testing room. Even the pediatric nurse thought it was kind of an odd set up.

Jackson was pretty upset at this point. I think he was getting pretty hungry and he knew we were not in our regular hospital environment.

After the rough start, the radiology tech finally got the radioactive dye going. Jack had to sit still for 45 minutes (ha) because the dye travels to the areas of most activity. We sat together and watched a movie so the time went pretty fast.

After the dye ran its course, it was time for sedation. The anesthesiologist went a different route this time (since his port was already accessed) and gave him "milk from a sleepy cow" through his port. It was a much calmer experience than having the masked sedation.

Ryan and I left after Jackson fell asleep. We were only away from him for about 30 minutes, much less time than we thought we would be.

Next, we headed to recovery where he slept (and snored) for a bit. While we were waiting to be released, a Child-Life Specialist from the Oncology floor came over and got Jackson started on the Beads of Courage program. It is such a cool program and I'm really excited about it. I'll post more about that later.


{Amy explaining Beads of Courage}


{Listening}


{Choosing beads}

We were released and at that point, we still had an hour before our clinic appointment. We killed about 30 minutes getting ice cream :)


{Yummy green ice cream}

We got to the clinic 30 minutes early and they called us back right away. That caught me off guard! I was prepared to wait and think and pray in that 30 minutes...I needed it. So I was pretty shaky when we headed back. I'm pretty sure I was babbling to the nurse about something insignificant.

Jackson did the normal stuff--weight and bp--before we moved on to the examination room. We waited for several minutes and in that several minutes Ryan said "Calm down Momma" about 10 times. :)


{He always asks so sweetly!}

The doctor finally came in and it was the doctor who gave us the original diagnosis (we never know who we are going to see until they walk in). We actually had not had this doctor since June. It ended up being a really good thing because he was able to compare the tumor at the beginning to now.

He sat down and got right to it, which I was very thankful for.

No growth.

No spreading.

PRAISE GOD!

I was so fearful of growth and spreading and so incredibly thankful that they were able to say definitively that it had not done either of those things.


{Happy}


{Relieved}

So that was the good news.

The other news (not bad news, just not good news) is that the chemo did not do much. The MRI from May and the MRI from last week do not show any noticeable difference. However, the PET scan shows the tumor to be somewhat speckled, which could mean that part of the tumor is dying or dead. And in that case, then the chemo was beneficial. Along with that, when the doctor examined Jackson, he felt the tumor to be much softer and more pliable than the last time he examined him in early June. The doctor said he definitely felt a positive change in the tumor. So it is very possible that parts of it are dying. We are very hopeful that this is the case. They will not be able to say for sure until the tumor is out and sent to pathology.

Since the chemo did not do anything significant (that we can tell right now), the doctors determined that surgery is the next step. They feel that it was good that we did the chemo even if it helped just a little. Actually, the chemo kept it from growing or spreading, so the chemo did do something positive, but they think doing another 10 rounds would not be beneficial enough to put him through it.

We talked to the doctor for awhile about different things, one being that we will probably have to do some radiation after surgery. Then he sent us over to talk to the surgeon. Thankfully, he was willing and able to meet with us right away.

We got into his office and just went over the basics. The procedure, the concerns. LOTS of concerns. The actual mass is near vessels, nerves, his bladder, lymphatic tissue, his hip bone and pelvis. There are lots of possible situations that may come up during surgery, but he won't really know until he is in there. My stomach is turning just thinking about it so I don't think I am going to be able to type out all of our fears and possible scenarios, but please be prepared to pray with us that day!!
We will need all the prayers we can get.


{Of course we hit up the 'Toy Story' after such a long day at the hospital}

Surgery is tentatively set for August 23rd and we will be there a few days.

We are confident in our surgeon (and our God!). He is a really thorough and we actually met with him in the hospital in May. He has two boys also, the same ages as ours.

Overall, it was a good day! I will always take the positive news, no matter how big or small. My main focus is that the cancer will be out of his body very soon!!

THANK YOU all so much for praying with us and for us! It means the world to us. We still have a long, scary road full of unknowns ahead, but right now we are thankful to have this important step behind us!


Give thanks to the LORD, for he is good; his love endures forever.
Psalm 118:1