Fast Forward...

We went to Salt Lake on 11/1/10 to begin the 3rd round of consolidation chemo. Almost done!!! Jeremie over the last few weeks had been feeling some pretty bad back and shoulder pain. Every time he would hiccup or burp it would double him over. I hated it! It scared me. I just wanted to bubble wrap him and put him in bed. But I swear he has ADHD...he will not stay down for long.

Our oncologist in St. George sent Jeremie in for an MRI to look at his right shoulder as he was having horrible pain. At first they thought it was a blood clot. The MRI showed torn muscles, and "leukemic infiltrate". But it was explained to us that this could just be his bone marrow regenerating. And it looks odd on MRI. Jeremie was scheduled for another bone marrow biopsy with our St. George oncologists. Who wanted to be a "Rebel" and do his own biopsy. He was able to "get aspirate". The glorious fluid that was going to tell us that he was going to be better!

The bone marrow biopsy came back on 10/25/10. We got the call from Dr. Lemon our oncologists here. He said that the results were again inconclusive. Huh? The aspirate looked great, no signs of leukemia or blasts that weren't supposed to be there. But the cells obtained from the bone marrow biopsy looked "weird". Yup...another Dr. using the word "weird" to explain the silly looking odd malformed immature cells that were now in the marrow along with "dead" leukemia cells. GRRRR. Pretty much had a heart attack for 2 solid days as we awaited the cytology reports on these stinking weird cells.

The call came from LDS, from our coordinator Rachel. She reported that the cells were not leukemia!!! Woo Hoo!! So relieved. We were on schedule to come in 11/1/10 at 1:00 so that we could go to MRI for follow-up on the pain he was having in his arm and back, and then a bilateral bone marrow biopsy. Yuck! At this point we where excited to be giving cells to the pathologist at LDS. She was used to looking at Jeremie's odd cells. She wouldn't over react and tell us crazy things such as "weird" or possibly leukemia (or would she?). Then he would start his 3rd consolidation chemotherapy.

Was able to have a very pleasant weekend. Had a wonderful Halloween with the kids. Jeremie was a rock star and took the 3 younger boys trick-or-treating. I stayed at home and passed out candy. We finished the night at MeMe & PePe's. Such a wonderful night!!! Our Sunday was awesome! Just relaxed. Unpacked my last 4 boxes, and put them away.

Left for Salt Lake at 9:00 a.m., it was a bit crazy trying to get out of St. George. Phoenix was having a come-apart about having to go to school. And decided he lost his shoes. Found shoes...grrrr! Hectic makes me cranky. Gave Alex a list of things to make sure he does, then texted the other kids their instructions.

Arrived to Salt Lake 25 mintues late!!! Ran into MRI, of course forgot all the paper work from Snow Canyon Clinic. Had to call and have faxed to them. It was a comparison of the last MRI. Jeremie the trooper went through the MRI.

Went to the Bone Marrow Transplant Clinic at LDS. We were pretty ok then. Just thought we were getting ready for a bone marrow biopsy. Jeremie making sure the poor P.A. knew that he has a high tolerance to pain meds so make sure they work! They admitted Jeremie, and I ran downstairs to grab his pillows and his luggage. I was on the phone with Scarlett making sure everyone got home on time, when Jeremie was trying to call me on the other line. I didn't answer on time. I called back, he sounded upset and wanted me to hurry.

Got my buns up to his room as fast as I could. Of course he is on the 8th floor at LDS. Grrrr. I am thinking that he is upset because they are starting the biopsy and he doesn't have his wife or pillows before they begin. I run into the room and the P.A., nurse and one of our oncologists is there. Weird? I can see Jeremie isn't very happy. Still atributing this to the bilateral bone-marrow biopsy thing.

The doc turns around to me and reports that they found 2 leukemic tumors and 4 compression fractured vertebrae. The tumors are located at T4 and T10 (T means Thoracic). They are ordering a biopsy and a lumbar puncture "you already had a lumbar puncture...right?" Uh no he has never had a lumbar puncture. The nurse "are you sure". Uh yeah I'm sure, would have totally remembered that very invasive super difficult procedure being done on my poor spouse. On to the bone-marrow biopsy. That actually went quite well for once. Not violent. Jeremie adequately medicated and comfortable. And they were able to obtain aspirate. One blessing at this point.

Did not start chemotherapy that night. If by some small chance it was an infection, can't start chemo! Biopsy was supposed to be Tuesday morning. It ended up being Tuesday afternoon. The radiologist at one point gave us hope. During the 4,000 CT scans performed during the biopsy to direct the needle into the very small space in his back, they didn't think the "mass" was coming from the marrow in the vertebrae. So they sampled the "soft tissue" area coming off of the vertebrae. I had the unique pleasure of listening to every difficult word coming from this procedure. It killed me, hearing how difficult this was. It was supposed to be a 30 minute procedure. It turned into 2 hours and 45 minutes. They almost gave up. They were able to get the sample! The radiologists said it "looked more like an extramedullary hematopoiesis. I was so excited! That really could be it. He has been so anemic, maybe it is his body's response to anemia and the bone marrow being so cranky. Oh hope...hope...hope.

Wednesday...11/3/10. Hopes are dashed. They are leukemia. We have to do a lumbar puncture now. Lumbar puncture scheduled and performed on Thursday (said we would be surprised if Leukemia is present). Leukemia is in the CNS. No answers on what came first, or last. No answers on how or why. The only answer...is radiation for the tumors. Then our long term plan is bone marrow transplant. And oh by the way it will have to be an umbilical cord transplant because we can't find a good match. Oh sigh. And the fear sets in.

Thursday 11/4/10. Jeremie is simulated for radiation (or fitted). He is given 6 "freckle" size tattoos. They are to help mark where the radiation is going to "shoot" him. We are discharged from the hospital. We decided to go to Park City to stay. It was so awesome! It felt like a get-away weekend!

Friday 11/5/10. First treatment given. Jeremie did pretty good. Three hours later the nausea/vomitting set in along with exhaustion. Poor man. Just pooped!

Saturday morning. Was able to call up to the bone marrow unit and get a prescription for the nausea and vomitting that he usually only uses during chemo. Now it is going to be a long term fixture. The rad tech's said there shouldn't be a lot of side-effects with this "low of radiation". But when you are shooting it right through his stomach, common sense tells you otherwise. Jeremie counts how long each "shot" takes. A total of 58 seconds! Weird huh! They tell us that he should be out of significant pain by Sunday. Cool!

Sunday morning. Last dose of radiation in Salt Lake. They are really sweet. They helped get everything set up for continuing the radiation in St. George. Jeremie will have 7-10 treatments in total. We leave for home today. Oh I miss the kids! I miss work! I miss everything I ever took advantage of!