Day 45, February 29
(This one is kind of long, but it is very entertaining and interesting to read ;-). Sorry, it’s been a long day…)
This morning, we all woke up bright up and early because Allyson had to get to the hospital for her procedure and chemo treatments. Again, Ally knew what was going on…she did NOT want to put her coat on and get in the car. I think what helped her this morning was the fact that all four of us got in the car together. (Usually Benjamin is already at Tita’s.) Tita also came out to see her when we dropped the Monkey Man off. She gave Tita the biggest smile…very cute!
Today was the best Allyson has been when we go to the hospital for treatments. I think it is because she was accessed (the needles were put into her port) last night and we didn’t have to go through that this morning. (She HATES that - more fear than anything else.) The nurses and doctors on the PEDS floor at St. John’s know us now because we’ve been there so often. I am sure that is how it is with these kiddos. The nurses always ask us how Allyson is doing when they see us. We go to the Ronald McDonald Room while we wait…the volunteers are familiar with us now also. (On a side note…The Ronald McDonald House Charities is up for the Charity of the Year award here in St. Louis. I’ve been asked to write a blurb (me and one other person) about our experience with them and their impact on our lives. It is my pleasure to do so for them. The RMD room at St. John’s is a wonderful place for families of kiddos in the hospital. Keep your fingers crossed, and I’ll keep you posted as to whether or not they win.) The IV nurse met us in the PICU…here’s the info on that…
Allyson has to wear a backpack which holds her IV fluids and medication. She’ll need to wear it until at least Monday afternoon. Right now, she’s getting fluid and a chemotherapy drug for 24 hours. Tomorrow at 11:45, the nurse will come and change her IV bag to fluids only to begin flushing the chemo out of her system. (OK, mind you, the doc told us to wear gloves when we take Alllyson to the restroom because chemo will be in her urine. This is for our safety…more of a precaution than anything else, but still..YIKES…) Forty two hours after the chemo treatment has begun, the nurse will come again, and she will get another drug called an anti-dote that will help her body get rid of whatever chemo is still in her system. The nurse will come in again on Monday to check the drug levels in her body. If enough chemo is out of her system, she’ll be able to ditch the IV backpack. If not, she’ll have to wear it for another day or two.
About the IV backpack…the thing is just about as big as Allyson and weighs at least half what she does. It has a huge fluid bag in it as well as a battery pack and pump. There is an IV line that hangs out of the bag that basically keeps Allyson on a short leash. It is “fun” to keep her untangled and the Monkey Man away from such a fun looking “toy”.
All in all it has been a good day though, chemo backpack and all! Allyson is definitely the super trooper and we are very proud of her.
Benjamin…I took him to the grocery store after I picked him up. Two people stopped me to tell me how cute he is. I humbly say thank you, and then of course I agree with them! While I was there, I got some cheese for Brad and I. Benjamin kept repeating the word cheese over and over…it was cool. He repeats so much now, and he’s getting better about doing that on command too. He loves his night time bottle, and says, “Night-night!” over and over again until he goes to bed. What a doll.
We’ll keep you posted as to how the chemo treatments go over the weekend…