Ok, so this is late, but here is what has all happened since our last update.Thursday after all of our scans were done, we got admitted to the hospital. Once we were settled in our room, Lukas had to get cathederized. They had to collect 12 hours of urine to run a Creatine Clearance test on his kidneys. He also had to get an echo-cardiogram to test his heart function. The echo came back normal, but the lab couldn't get an accurate reading on the urine test so they had to do a 24 hour collection. The 24 hour collection didn't come back accurate either so the doctors decided to do a GFR test on his kidneys. We couldn't start chemo (and didn't want to either) until he had an accurate reading on his kidney function. One of the drugs (cisplatin) that he would be taking is super toxic to his heart and kidneys and if there is even the slightest problem with those two organs, giving him that chemo drug could kill him. The GFR gave us a good reading on his kidneys. They were working great.So, Lukas started 4 days of chemo (3 days of VP16 and Cisplatin and then the last day of just Cisplatin). Overall, it took about 9 hours a day to complete the first 3 days and about 7 hours the last day. The VP16 ran for an hour, followed by 15 minutes of Manitol (basically a "flush") then an hour of Cisplatin and then 6 hours of Manitol, regular fluids and "pumped up" fluids. The Cisplatin is also ototoxic (toxic to the ears and hearing) but Kurt and I decided that we would take the chance of having hearing problems rather than him loosing his eyesight. The lesser of two evils in our view. We also met with the Neurologist and the Neurosurgeosn. Surgery is NOT an option right now. It's too very, very risky. The Neurosurgeon doesn't even want to attempt surgery, one because it would take two different specialist surgeons (Neuro and Ear, Nose and Throat) to perform it. It would consist of the ENT going through his nose or opening up his mid-face if he couldn't get in the nose and then the Neuro opening up his head and going in from the top. NO WAY!!! Plus the tumor isn't pushing on one specific spot that is causing all these problems, so they can't even guarantee that if they were to go in and remove the tumor that it would fix anything. We spent 8 days in the hospital and are now home, but we had to start giving Lukas GCSF shots at home to help boost his white counts. I get the honors of poking my poor baby every day for the next 10 days. We will be working hard to get Lukas counts up and keep him healthy so the doctors can harvest his Peripheral Blood Stem Cells here in about a week. We will be doing scans on the tumor again to see how well this round of chemo worked. That will determine our next dosing of chemo. We are collecting stem cells to have on hand in case we end up following the heavier dose of chemo. His bone marrow will be totally wiped out at the end and he will need the transplant. If we don't have to go on with the heavy dose then we'll have his cells on had in case we ever do need them in the future. So that's where we are at. The unknown lies ahead and we are still working to take one day at a time and enjoy the times that Lukas is happy and smiling and comfort him when he's in pain and miserable.
Pictures to follow!!!
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