Eden update and schedule for this week
The preliminary results from Eden's stem cell harvest were miraculous! We hoped to get enough cells for three stem cell rescues; what we got was WAY more! That little girl was a virtual stem cell factory last week; she pushed those stem cells out like crazy. The technician who performed that harvest for us (Bonnie Bowen) was shocked and surprised at how well Eden did. Bonnie had been told not to expect much from this harvest, since Eden has had so much previous chemo the NAYSAYERS (you know who you are) were being super pessimistic. These people just forget that they are dealing with EDEN ADAMS and that she writes her own story.
So today, we had a visit from Jody from StatNurse, our home nurse. She accessed Eden’s port so that I can start hydration at 4:30 AM. She gave me the run down on how to do it and the next time that she needs to come out for a visit, she will walk me through accessing Eden myself. Rourke and I feel very strongly that we need to learn how to do it for emergency situations. It would also be nice to have the knowledge in case we get a nurse who doesn’t do a good job of accessing Eden and then I can shove them to the side and make the situation better and safer for Eden. We’ve had a few that just couldn’t do it and had to ask someone else to do it for them.
Hydration starts at 4:30 AM and runs for four hours. We need to be in the clinic at 8:30 AM to ensure that we don’t have to spend the entire day there.
Here’s the rundown on Eden’s day:
Hydration for four hours before chemo
Vital signs taken at the clinic
Urine sample collected and sent to lab
CBC blood drawn and sent to lab (at least an hour wait)
Hydration started again (hooked to an IV tree with a pump)
Premeds to prepare for chemo
Topetecan (30 minute infusion)
Mesna (15 minute infusion)
Cytoxan (30 minute infusion)
Unhook from IV tree and pump
Hook up to home IV fluids, which runs for 4 hours
Get Mesna from nurse and verify what time to give it at home
RUN for the door.
Mesna push over 15 minutes at home, at the appointed time
Saline push over 15 minutes at home, after the Mesna push
Unhook IV fluids
Push Heparin through line to ensure that the line doesn’t clot with blood
That schedule is so simple and seems like it should be very quick, doesn’t it? Nope! Some days we are at the clinic for six hours or more. Others we are out in four or less. I cannot figure out why some days take SO long and others seem like a chemo drive-thru.
So my day starts at 4:30 AM and doesn’t end until Eden goes to bed. We shoot for 9 PM, but it’s getting harder and harder to get her to go to sleep. Some nights I put her in her bed and when it’s time to hook her up for hydration or to wake her to go to the clinic I have to hunt her down. She might be in bed with Riley, in bed with Rodger, on the couch or hiding out underneath our bed. For some reason she thinks that it’s ok to wander around at night. Poor Riley is very tired of waking up to a snoring, bald little sister hiding under his covers. I don’t know who told her this was ok, but it does make my job harder. I cannot hook her up to hydration and leave her in bed with someone else. They might roll over and pull the IV line or crimp it or GOD forbid, pull the needle out of her port!
So we’ll do this schedule each day this week. We'll add in a visit to the audiologist on Monday, on Saturday, we will start doing daily injections to boost her white blood cell count and we’ll have two clinic visits next week, as well. The following week will probably be two more clinic visits. Don’t forget that at any time Eden may need a transfusion, which extends the day by a couple of hours, at least.
I may or may not update this week. I have to admit that this is taking a toll on me emotionally and physically. It’s all I can do to get through chemo week, let alone try to update the blog, cook dinner, make sure that someone is watching out for Riley, do laundry, mow the yard, pass out meds, pass out food, keep Eden from hurting herself due to low platelets, get Riley to his appointments, try to spend an hour or two with my husband, push kids into baths and bed and all of the other things that have to be done in a day. I wish I had a house elf like Dobby (from Harry Potter)!
Hope your week is grand!