On Monday, our first day back, Ry stayed with me to get us checked in and left around noon. I set up the room so I felt a little more at home and I hung fall and Halloween decorations (pics to come). Occupational Therapy came and did their evaluation on him and our favorite Chaplin Rebecca stopped by! It felt good to see familiar faces in a unit we were unfamiliar with. Keegan was in a great mood giggling and laughing for our nurse Rachel (she looks like the Rachel off GLEE too!).
Tuesday passed VERY quickly, which is surprising since I was alone. Usually my time spent alone is long and depressing. We got up, I gave him his meds, THEN EVERYONE decided to visit. Our social worker stopped by, our at home coordinator popped in, so did a music therapy lady to introduce herself, we also had our 2 stem cell docs, Cathleen our Stem Cell coordinator, the Stem Cell NP......I hope I am not leaving anyone out! I gave Kee a bath, sponge of coarse, dressed him and we played for most of the day. OT did come in to have a session with him. They worked on turning pages in board books along with lifting flaps. After a little nap we got up and watched The Wiggles DVD. Keegan sat up, assisted of coarse, and watched the.entire.video! I even tried to get him to lay down but he would not have it!!! He wanted to sit up and watch his movie!
Wednesday was also a great day! He was the same ole giggly, bubbly Keegan. This is great to see although I fear that the vomiting and crankiness is soon to follow. Today was his last day on Carboplatin. We had to get a GFR-what is a GFR you might ask well the answer can be found HERE or I can summarize by telling you that its a test where they inject a "medication" into Kee's central line. There is a blood draw at 1 hour post injection and then 3 hours after the initial injection. These draws determine how well his kidneys are functioning and spitting out the bad chemo drugs. He passed with flying colors so his dosage on the Carboplatin didn't have to change (Thank Goodness-momma is not good with change!). Meanwhile we just hung out in our room, entertaining visitors when they popped in and just having a grand 'ole time! I did find out that Keegan thinks the "Oink" snort of a piggy is absolutely hilarious! It's so funny to see him crack up over it!
Tonight Keegan is getting a new drug called Thiotepa, it can cause lots of problems and this is where the worry wart in me is FREAKING out! Thiotepa can cause sterility, but really, that is not of my concern at the moment, call me inconsiderate. I would rather him have a life and be sterile than no life at all! Thiotepa is also very harsh on the skin. He has to be bathed pretty much every 8 hours or so to keep his skin from being burned and to keep it from turning brown. So the Thiotepa was started at 6:30 pm tonight. He had to be bathed at 8pm and will have to be bathed again at 4 am. Along with bathing we have to change EVERYTHING that touches him i.e. blankets, clothes, leads....well you get it. This is done religiously until Sunday-24 hours have the Thiotepa is finished. After the three hours of Thiotepa (kinda a fun word to say) he gets Etoposide or VP16 for another 3 hours. He has had this drug before just not in IV form. This is one of the drugs that was administered at home and given through apple juice. The IV form is a lot more potent, but these two drugs are a lot of the time given in conjunction with one another.
So Ry is on Keegan duty tonight so I can get a good nights rest. It wears on you sleeping in the hospital for days at time. My body has become accustomed to the uncomfortable purple chair bed thing and people CONSTANTLY coming in the room all night long but; a nice, soft, gushy bed is nice once in a while too! I hope to find a happy baby when I get back over to Kee tomorrow!
Here is to a couple of bendryll, my eye mask, and LOTS of prayers!
PS- I have had a few inquires where to send stuff if people wanted to send letter or encouraging words or such. You can send them to us at the Ronald McDonald House.
That address is:
Ronald McDonald House
c/o Beth & Ryan Chupp Rm 36
435 Limestone Dr
Indianapolis IN 46202-2189