Sydney Hurt Her Finger
When the kids were here the other day, they were playing with one of the port hole doors where some bins are stored (see pic of Tucker below). While playing, Tucker shut Sydney’s finger in the door which led to many tears. Today the kids stopped by again and Tucker played with the door once more. Of course Sydney wanted to remind everyone that her finger still hurt so she showed it to us. I’ve been waiting for this day for quite some time. I didn’t realize she hurt “that” finger, so I was a bit unprepared, but the moment was still as good as I imagined. She raised her hand and then raised her middle finger to show me her boo-boo. I love the innocence of a child. All she wants to do is have her wittle fingwer kissed and I hope it’s a long time before she learns the meaning of a raised middle finger. Now that I think of it, I’ll probably need to keep her away from Brian and Corry.
Today Camp UMAC kicks off. Camp UMAC is when the kids go to Uncle Mark’s and Aunt Chelle’s for a few days each summer. The kids love it and mommy and daddy like the break. Camp UMAC has been scheduled for quite some time and didn’t take into account Daddy’s cancer schedule. Granted, the timing really couldn’t be better. I’ll be discharged on Saturday, and the kids will be back on Sunday. I’m really not away from them for much longer than I would have been and the time away allows Lindsey to get things ready for my return and for me to have a bit of time to adapt to life back home with an IV Pump. The kids stopped by today on the way to Camp UMAC. Sydney didn’t want to come into my room because that was just delaying her trip to camp. Eventually she did come in, and we obviously got the pleasure of seeing her finger boo-boo. After 30 minutes or so, I got 3 sets of hugs and kisses goodbye and the kids headed out to Camp. Have fund kids! And if you want to stay for an extra session of camp, that is fine with us 🙂
Two More Sleeps
It’s hard to explain time to the kids. Whenever they know something is going to happen, they always think it will happen that very day. As we get closer to the date, we’ve taken to explaining the timing of things in terms of how many more times they need to go to bed and wake up. It also ends up being an incentive to go to sleep, which is a bonus. I will be discharged on Saturday, so I only have 2 more sleeps in the hospital. I can see the light at the end of the tunnel (which is hopefully different that the big white light you are supposed to walk towards).
My Pooper Pad
No, I’m not wearing adult diapers. But blinatumomab is considered a Class A hazardous drug. Actually, all cytoxic agents are considered class A. Blinatumomab is excreted through my pooper and my penis. When the toilet is flushed, if it is not covered, there is a chance that particles can float into the air (pretty picture, right). To combat this, I have a pad that covers the toilet. When I take care of business, I lift up the pad, um, take care of the business, and then put the pad back down before I flush. Now flushing is quite a reflexive thing after you stand up. I’ve found that it is best to put the pooper pad over the handle of the toilet, just as a reminder to not contaminate my bathroom (at least not with particles of my meds). The method works pretty well. Once I’m home, I’ll just close the lid before flushing. Hopefully I remember the lid is closed in the middle of the night.
New Dose, No Problems
This morning around 9:45, I received my increased dose of Blinatumomab. I’ve been receiving it for around 10 hours now and I haven’t had any issues. The Clinical Nurse Specialist reached out to one of the trial sites and they said that most people did not have new or additional side effects with the increased dose. That’s great, as it gives me a little bit of hope that I’ll feel ok while at home. There is still a risk of neuro toxicities and other complications, but those occurred in a small amount of people, so hopefully I’ll be ok. Then again, Leukemia only occurs in a small amount of people. Hmmm…..
And the Powerball Numbers Are:
7/23: WBC- 1.2, Hemoglobin- 7.4, Platelets 60
So my whites have been the same the past 3 days. This is good, as it means I’m not neutropenic and I don’t have to worry about staying in the hospital if I get a fever. My hemoglobin ticked up, which is somewhat unexpected. Of course I’m hopeful it keeps trending in that direction, but time will tell. Something that is trending in the right direction are my platelets. I’ve also noticed they are increasing in multiples of 5. My OCD kind of expects that now. Dear IUH Lab, please only report my platelets in multiples of 5 now. Feel free to round up or down, depending on how you are feeling.
A Duck Dynasty Prayer
Thank you God that I only have 2 more sleeps in the hospital. Thank you that I am tolerating the increased dose well. Thank you that I will be at home with my family. Every day is precious with them. With or without cancer, every day is precious. May that be something that more and more people realize. That more and more people take advantage of every single day. I most certainly thank you for another day.