The week of April 3rd was Nick's second week of the chemo ARAC for 4 days. His blood counts were fairly low and it was pretty certain he would likely need blood by Thursday. So they did an additional blood draw for the type and cross so they could order blood quicker. When they do a blood type and cross for blood products it takes around 2 hours to get the blood than an additional hour or two to infuse into Nick. By doing the type and cross ahead of time it made it possible to get the blood ordered before we get there. We went home and Nick spent most that afternoon and the next day sleeping. Wednesday morning I called up to clinic and asked to bring up Nick for a CBC and blood that day. We arrived at clinic about 10 and spent a good portion of the day there with Nick getting 2 bags of blood. By Friday Nick decided he probably needed to get his feeding tube back in. It had been a rough 2 weeks, he had not eaten much at all and was feeling the effects. I texted our fantastic home health nurse Dylan to please come over and place the tube for us. Dylan came late in the afternoon and put it back in. Nick was amazing. Getting a feeding tube in is not Fun! That day was particularly rough, it took two times to get it over the spot in his nose to snake down to the throat, and then it took 3 more tries of pulling it partially out to get it placed correctly in his stomach.That weekend was a nice break to get over the chemo nausua.
Monday April 10th Nick went to clinic to be accessed, a CBC, meet with docs, and then downstairs for his LP. Once he was awake after his LP it was back up to clinic for Chemo. He started his 2 weeks of Erwinia shots and had a chemo pushed through his port called Vincristine. The Vincristine is a chemo he gets a lot, it is the one that causes the nerve damage in his toes. The good thing about the Vincristine is that it doesn't make him nauseous. The Erwinia shots are 1 shot in each thigh of chemo, he does them 2 weeks in a row, 3 days each week for a total of 12 shots. They are not fun, he says they sting a great deal but he handles them well and they do not make him sick anymore. His legs get pretty sore by the end of the round of shots. This day ended up being extra hard for Nick, he woke up from the anesthesia very sad and it continued the rest of the day. Wednesday April 12th we were back to clinic for shots again, it went really fast that day. Got there at 10, had shots in by 10:20. Waited our hour in clinic to monitor for allergic reaction then home by a little after noon. It was awesome.
Thursday afternoon we got some bad news that Nick's fungal marker had shot back up to over the 500 mark. We got to mull that over all night until we could talk to the doctors in clinic the next day. Friday morning Kate had a gymnastics meet at 8:00 am. My wonderful mom came and sat with Nick while Bryan, my dad and I went to Kate's gym meet. Bryan had to leave just before the last event in order to get Nick to his noon clinic appointment. My dad was kind enough to go with them as I was still with Kate at her meet. I think my dad really enjoyed going to clinic and seeing what that was all about. He had a CBC and his Erwinia shots and Bryan had a chance to talk to one of our doctors regarding the fungal marker. They had spoken with the ID (Infectious Disease) Doctors and it was determined a CT scan should be done. They scheduled him for a CT Monday afternoon after clinic.
Monday, April 17th was our regular clinic visit. Nick has his CBC, met with his doctors and his two chemo's- Vincristine and Erwinia. We then went down to the CPC for his CT scan. You spend the first hour to hour and a half drinking contrast for the scan. In Nick's case I did all the work, putting the contrast in his feeding tube a little at a time. I think he liked that way better. We went back for his scan which takes about 10 minutes and then back up to clinic for results. After a small wait, our doctor came in and said the scan showed the spleen fungal spots had gotten worse. Oddly, the spots in the liver and kidney where almost gone. He went over what he thought might happen, either a biopsy or possible removal of spleen. By Tuesday morning after the ID doctors weighed in along with a radiologist, it was determined a biopsy would be the course of action. We went in Wednesday for Erwinia at clinic and we are back here today Thursday April 20th for the biopsy.
Our hopes and prayers are that the biopsy will go smoothly, with no complications and they will get a sample. We really need a sample so they can test it and see what meds will treat it the most effectively.
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