2 new spots, treatment plan and PUKE

Sorry it has taken me so long to update. We went to Atlanta Thursday night after the preschool open house. We took the camper and set up at Lake Lanier, making the best of a long day on Friday. Gracie went with us this time too. We were at the hospital Friday morning bright and early and didn't leave until dinner. Again, there is an 8 hour minimum at that place! The bone scan was a slow process. IV fluids for 2 hours, then they inject the RADIOACTIVE isotopes (yeah, that's comforting) and he waits 4 hours. Then the 2 hour scan. It isn't an X ray. It detects "hot spots" in the bones; places where there is activity. It showed 2 more new spots in addition to the 2 we knew of - one in the skull and one in the jaw. Honestly, that was good news. We expected more than 2, so 2 was good. The skull lesions were a bit of a concern because the pituitary gland is in our heads. There is a 40-50% chance with LCH of getting Diabetes Insipidus. DI causes one to urinate buckets in a day. Thankfully there is also an urge to drink. But still - very inconvenient. It can be controlled, but it never goes away, he'd be on treatment for life. Chemo cuts the chance in half.
We went for a few X rays of his head and jaw before we left for the night. Dr. Rapkin told us to come back on Monday for the treatment plan and to think over the weekend. We were really glad we'd decided to stay in Atlanta this weekend!
We had a great weekend at Lake Lanier. This was my kind of camping! We were 3 miles from TJ Maxx, Starbucks and a Super Target. I was comforted by that! In fact, we went to TJ Maxx while Chad bought a screen house at Dicks and got Grant some bigger shirts to fit over his shell. We just hung out and went exploring on Saturday. Saturday we went swimming at the little swimming beach. We took off Grant's shell because I didn't want it to get all funky from the lake water. He started complaining and was ready to go in about 25 minutes. Good to know the shell works! Then on Sunday we went to the water park at the Islands at Lake Lanier. It was really fun! Grant was able to have all kinds of fun, while wearing his shell and he made it all day! Bless his little heart though, he'd try to slide down the little slides in the baby pool on his belly and the shell would stop him almost instantly, but he kept trying and was having a blast. Gracie went on every slide - a totally different story from a year ago at White Water! It was a neat park - not crowded, plenty to do and a nice surprise for our weekend.
Today we were pleasantly surprised to learn that our appointment at Dr. Rapkin was at 1:15, not 4 like we thought on Friday (glad we called to check!). So we scurried around and got the camper packed and ready to go before going to the dr. Grant was glad there were no pokes involved today. He went over the radiologist's report of the X rays with us. He noted in the report that there are 2 "floating teeth" in his jaw X Ray basically they aren't going to be ready to come in when he looses his baby teeth . Dr. R wasn't sure what that meant and was going to check with him. Those of you that know my dental history know that I know EXACTLY what a floating tooth is and that it is not a good thing! But we'll deal with it one day at a time. It seems like small potatoes now.
He didn't like the skull X rays and ordered a head CT for 3-4 weeks from now. He just couldn't see much and wanted better pictures. Remember the DI - we want to know what is going on in the skull.
We decided after MUCH discussion with Dr. R and one another to go with the oral chemo and steroids. So he will take Methotrexate (12.5 mg a week) once a week. It is 5 tiny little pills. Then Prednisone in the am and pm every other day (8 mls liquid). He gave us Zofran for the nausea he may have with the chemo. Otherwise there shouldn't be much in the way of side effects.
We don't go back until at least 3 weeks! But we all know that can change in a moment. If he has over a 101 fever we have to go immediately. Otherwise, we go back for the CT scan, a bone survey (X ray of EVERY bone in his body) and follow up with Dr. Rapkin.
So, we headed home. I stopped in Atlanta and got his prescriptions because we weren't sure they'd have them here and wanted to start asap. We got home about 8, ate dinner, I gave him the Zofran, took a bath and then it was time for the PILLS. Gracie cut a Flintstone vitamin into 5 pieces so she could learn to swallow pills along side him. She really wanted to be a part of it. I told her that idea this morning and she was all on board. She has developed several horrible illnesses since Grant's diagnosis and I think feels a little left out. She did way better with the pill swallowing than he did! We microwaved a Starburst candy and pinched a little off and wrapped the tiny pill in it (read that online). But remember, he had FIVE to swallow. We bribed him 1 quarter for every pill, a donut at the end and a Starburst. He did really ok, considering. There was a bunch of cheering and a whole lot of begging. He did it though! Then the shot of Prednisone. Done. Well, we got the donut ready and about that time - VOMIT CITY! All of it came right back up. So here we go again. We'll call our nurse tomorrow and see what to do. We think it was the Prednisone right after that did it. The pills are so tiny, we may try to mix one in a bite of ice cream or something tomorrow (or next week, whenever we try again).
We feel good knowing that treatment is underway. Well, sort of, we have the prescriptions at least. I am learning though that we are not going to fix this quick. This is going to be a lesson in trust and patience. Whew, those aren't fun things to learn! Likely this will be a long road - not a fatal one though! I read a story online about an LCH family that had been dealing with this for 12 years and the dad said, "she is 18 and I have yet to exhale since she was 6." I understand that. It may go away, you may think we are 'treating and it is going to be fixed' just to change the treatment in a week, it reappears after years, and then there is the DI element...you just have to trust. We'll learn.