Today's biopsy

Before we left for the hospital this morning




Whew...15 hours later, we are home. We went to Atlanta last night and were at the hospital this morning at 7 am. You know that he couldn't have anything to eat or drink. We thought that would be no biggy because it was so early...not so much. He was SO WHINY about wanting a drink it was awful. He kept crying saying, "I'm gonna die." Dr. Rapkin was broken hearted by his fear until he realized it was only because he wanted a drink. He didn't even know he couldn't have drinks. We kept telling him in a minute he could have a drink (the medicine). He has really started acting out more. I guess out of anxiety. But he hit Dr. Rapkins glasses off his face and screamed at all of us that we were mean. After all the prep and talking to the dr. doing the biopsy, Dr. Rapkin and the nurses we we more than a little worried.
Dr. Rapkin came in before the procedure with some papers for us to sign to give the 'left over' tissue to the nationwide bank for research. He brought the papers for the cancer not the histio. When we asked why he said that it was because if it is cancer we will have many more decisions to make and he'd like to have that one done. After some more questions we realized that he does think it is the cancer. He explained that based on the CT scan, which is really all we have other than standard X Rays, it looks like cancer. There is a vertebrae, disk, vertebrae, disk all the way down your spine. Histio will eat the vertebrae down and destroy it until it is flattened and the disks are smooshed together with the shreds of the bone in between. Grant's scan doesn't look like that. The "destructive matter" has replaced the space of the bone and it has not collapsed. Dr. Rapkin said that usually only cancer will be strong enough to support his body weight (all 15 kg!) and that the histio would collapse. Very concerning.
So we had that news when he went into the procedure. You have to know that Dr. Rapkin is wonderful. I think that is part of the reason we are so calm (that and divine peace). He really makes it clear and somehow less scary than it sounds when I tell it. Or at least God twists it in my head and we are ok.
He was fine going in, took the medicine fine and thought it was fun to ride on the bed down the hall. He was a little drunk from the medicine that they gave him and doesn't remember any of it. Chad and I waited and had our 'moment' with the news we had been given while we waited. I also realized that the Scottish Rite network blocks all 'social networking' websites, including this one. So that is why I am just now posting, sorry.
They took a biopsy of the place on his rib and also on the spine. It took about 2 hours and all went well. They felt that they had good samples.
Then they brought Grant back...he was NOT happy at all!! He was very unhappy that he had an IV. More than very unhappy! It was horrible. He cried for at least 30 minutes. It was really hard to see him suffer like that. We knew he wasn't in pain, but he was scared by that thing in his hand. He is so sweet though, we were bribing him with anything we could think of and I asked if he wanted Sprite. The recovery nurse said, "can he have that?" when I said yes she told us that when he first woke up and started to freak out (sounds like he'd been upset for quite some time before they brought him to us) she offered him a Popsicle and he said he couldn't have sugar, but he'd like some milk. Bless his heart! Such a good boy! We got him a Popsicle and a Sprite but he didn't want either for awhile and never the Popsicle. In fact, he still hasn't eaten or had much to drink. After they finally took out the IV, he said, "well, that didn't even hurt." So now he said he won't cry next time because he knows it won't hurt. Granted, he was asleep when they put it in, but we're hopeful.
He didn't sleep at all. After 2 doses of Morphine he was still interested in watching the Rescuers.
Right before we were discharged, Dr. Rapkin came back and said that the pathologist said he didn't see cancer cells on the wet reading of the tissue and he did see histio cells. YEAH! That is very good news. BUT, Dr. Rapkin was very clear that we shouldn't pop the champagne yet. These tissue samples have more tests to go through before we have a definitive answer. He also said that the pathologist thought he'd have more information tomorrow rather than Friday.
After we were discharged we went to get his temporary back brace...Another melt down. He HATES it! Hopefully he'll get used to it and do better tomorrow after some rest.
He slept for about an hour and a half on the way home and is in bed now. I gave him some Tylenol 3 before bed and hopefully he'll get good rest. They said he will be very sore. We are planning on staying home in the morning to rest then going to watch Gracie's tennis match. Then we are going to hang tight close to Aflac so that when Dr. Rapkin calls we can be together to get the news.
If it is Histiocytosis, we will go back next week to have a full body bone scan and a cranial CT scan (it is very common in the skull). Then we will start treatment next week. That will more than likely by oral chemo and steroids. VERY MANAGEABLE! If it is Cancer, we will go back and have the bone scan, cranial CT, the MRI, and have a PIC line implanted. We will also have a day of "In processing" to the Aflac cancer center. I know this involves having lots more blood drawn and who knows what else. Then we'd go back the next week for inpatient chemo. Obviously, we want option 1.
Thank you for you continued prayers. We are doing ok. Much better than many of you. We are praying for God to give you the peace He has given us.

And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus. Phil. 4:7

These are his boo boo's. He wanted to see them, so we took a picture.

"Ok, Dad, I'll do the thumbs up, but I don't want to."