Verdigets.com

(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…

Allyson woke up bright and early today - not as early as yesterday, thankfully.  I believe we were out of bed by 6:30 this morning.  Allyson and I were able to get out of the house for a bit today, and that was nice.  She was such a good girl…I think she loved to be out and about.

The infusion nurse came this evening.  She had to double access Allyson’s port (she didn’t like that at all, but she let the nurse do it).  - The nurse came because Allyson has be to fully hydrated for this dose of chemo.  Right now, she is hooked up to a liter and a half bag full of IV fluid that is in a backpack.  She’ll be hooked up to that all weekend because she is going to receive medication through it all weekend.  The nurse will have to come out to the house Saturday and Sunday to check several things and change her IV bag when necessary.  (We will actually learn how to change the bag ourselves as well as learn how to use the pump.  It came pre-programmed this evening for Ally’s infusion.  -  So far, the IV backpack hasn’t seemed to bother Allyson.  Brad told her it was her rescue pack (like the one Diego has…Diego as in Dora and Diego), and she seemed to think that was cool.

Tomorrow we are off to the hospital (have to be there between 8:30 - 9:00) for a spinal tap and chemo.  Hopefully all will go well and we’ll be home early afternoon.   I’m tired and off to bed.

This morning Allyson decided at 3:30am to announce that she would like to watch The Backyardigans. She first tired to get my attention and then Lisa’s. Lisa had to go and lay with her to get her to go back to sleep. After that we got moving around 7:45. Allyson was hungry and wanted hot dogs with mustard and ketchup, so that was what she had for breakfast.  We played and ate all day. Allyson loves strawberries and blueberries right now. She ate at least 9 strawberries and several handfuls of blueberries.

This evening we all played ball in the living room. It was cute to see Allyson roll and throw the ball to Lisa and I. Benjamin would run in the middle try to catch the ball. All in all it was a good day.

Until tomorrow….

Short and sweet…Allyson had a better day today.  I feel like I keep saying this, but she was the most mobile she’s been yet.  Her legs seemed stronger today…she crawled around alot today, and she actually walked around the family room a bit this evening (Ok, it was like 30 seconds, but we’ll take it!  Have you ever actually waited 30 seconds for something…that’s a longtime!) !!  We kept waiting for her legs to give out, but they didn’t.   I kept trying to get her to want to go out somewhere with me (the mall, Target, the toy store -anywhere), but she was content to stay home and play.  This evening I left for Walgreens to pick up a prescription…she stopped me before I left and asked if she could go with me.  She was so cute…when we got home, she didn’t want to get out of the car.

Benjamin had another good day.  He was TIRED when he got home this evening.  He feel asleep on the way home from Tita’s.  Maybe he’s having another growth spurt.

Allyson was a little off today. She couldn’t decide what she wanted to eat…what she wanted to do or not do…she’d then get frustrated and fussy. Can’t say that I blame her though…she wants to be mobile and she’s trying. The problem…her legs just don’t work like she wants them to work. Each day gets a bit better though - she’ll cruise the furniture more now, but she’s still tentative.

Benjamin had a great day too. Tita commented today that he’s so much more comfortable now when he comes to her house. At first, he was a bit fussy. Now, she says he “play all day”. She gave him a dinner roll for a snack today. She told Brad he loves bread…we think he just loves to eat!

A bit of snow is supposed to come through tonight. Hopefully the commute won’t be too bad tomorrow.