My technique for countering the side effects

Side effects of the cocktail

Hey It's me again,
Thanks for the comments everyone. It makes my day (when I'm up to it) uuddllees more better.
Haven't been up and cruising much lately. I decided to mess with the doctors and make my blood and MAS do strange things. Ha! But after another oil change and a few minor tuneups,
I'm feeling lots better physically but I've been in so much pain they upped the atavan (pain med) that it knocked me out and made me way loopey. The Docs said sorry and oops though
I basically lost a day or so because of it. Mom and Dad said enough of this Hospital cusiene and started bringing me in real meat (the stuff they serve is NOT real here). Even a Ben and Jerry's now and again I'm off that immunosuppressed diet that I was on. That was even better.
Gotta have some comfort food sometimes. Looks like we are going to try to up the Thilidomide and Anakenria some. If that doesn't do the trick we are going to go with a drug called Rutuxamab with the rest of the cocktail. I'm going to take the weekend off from all the pokin an prodin so I think it's going to be all good except the weather.
Thanks for the thoughts and prayers
Love Kayla, Mom & Dad

Today is a very sucky day. I feel like complete crap. My back is still spasming, my chest is still tight, and my head is killing me. When I tried to get out of bed this morning I almost toppled over. The only reason I didn't end up on the floor is cuz Dad was there. The doctors think I have a little fluid around my lungs, so they're giving me extra diuretics to help get rid of it. They are also considering another steroid pulse to help keep the other diseases at bay. There is good news too though. Just a few minutes ago the rehab coordinater came by to discuss a longer term plan, which means I'm that much closer to discharge date. If I can just stop feeling like I just went through the ringer, I can try some exercising. They said that the reason I'm all light headed and dizzy is because my electrolites are messed up. The doctors say that is because they are trying to wean me off the diuretics, and the docs got a little ahead of themselves. They wanted to try PFTs (pulmonary function test) today, but there's no way I could stay off my oxygen for ten minutes. Heck, I can't even stay off my oxygen for one minute before start to crumble. I can't let it get me down though. I am getting stronger every walk, and we're almost ready to start on stairs. After we get this fluid figured out. Just keep praying it's nothing serious, just a little extra water. Well, i am gonna have to say ta ta, i'm not feeling very well.

P.S. I just want to say that all the prayers are much appreciated, so keep 'em coming. Right now if you want to pray for me, just pray that we figure out what's wrong soon.

Howdy all! Kayla here. Not much has changed since Friday, except Iam getting better every day. They drew blood today and it looks like I might get out of isolation, depending on if the C-DIFF is gone. Yesterday was beautiful weather, so dad and I went outside and played scrabble, at which I beat him by two points. Today has been kind of hectic, because we got a bit of a late start, but that's ok. The docs were late anyway, so it all worked out. There is one big victory of today though. The doctors actually said it might not be too long before we look into a long term rehab plan!! Well, I guess I should go so that I can get in some exercising before my meds, so see ya later. Oh yeah, and I'll update on the C-DIFF issue tomorrow.

Greetings from cell block Train.
Hope all is well with my fan base. I'm doing exceptionally well today. Even got out of bed by myself.
Dad even showed me how to roll over and not play dead. Doesn't sound like much but try lounging around for a couple of months. New med (thilidomide)seems to be working without the nasty side effects. This is #7 on the treatment rollercoaster. Everyone keep thier fingers crossed and stuff. Still in isolation but as long as I don't lick the walls and things I can sneak outside with dad. I'm trying to get off the colorful array of pills but my hips are causing grief. Oh well baby steps. At least my blood is looking better. AMEN
Love All
Kayla

Hi everyone.
Kayla had a rough weekend. She was given to much fluid, flooded her lungs. They have a pill for that to. I would like to get her off of the medication as soon as possible! It is very hard on your kidneys. Wednesday night they started a new medication that will hopefully be the one to get everything under control.
Child Life lent her a keyboard, so she is able to practice her piano a little. She is still in isolation. Once she gets out she can use the piano in the playroom.
On Monday the teacher will start coming to her room from 1:00p.m. to 1:30. The teacher at the hospital has tons of enthusiasm, Kayla should bee in good spirits with her around, and maybe catch up on a little homework.
Kayla will be in the hospital at least 7 to 10 days longer. We pray she continues to heal.
Thank you for all your prayers.
We will update as soon as we can
Rick, Jeneice & Kayla

Hi All,
Having a very down day today O2 way up and those evil doctors put me back in isolation again!!
they think my C-DIFF (intestinal infection) is rearing it's ugly head again. Or it just never went completly away. But as long as I'm on all these antibiotics there will be the risk. I am really sick of being sick. We are kinda back on a day by day thing so my discharge date is in limbo again.
Got my meds so it's back to sleeeeeeepy time
Love all
Rick, Jeneice & Kayla

Friday Morning

He Everyone

Kayla is having a down day. She has a fair amount of fluid in her lungs. The doctors gave her some medicine to help that. She is receiving a steroid pulse (1000mg) for her lung disease & an extra shot of Anakinra(jra medicinge) this morning. Her knees have been really bothering her this morning. Hopefully the meds will cut off the direction she is headed in.
The weather is yuky!!! Tipical Seattle weather.
Take Care
Rick & Jeneice

A pretty good day today. My oil change went went well yesterday. On to the tuneup today.
red blood cells yesterday, plattlets today. Still on an Easter basket looking array of pills and things but I'm wittling them down. starting to get around but after you lay in bed for a while
nothing seems to work very good. I'll keep trying every day. Hope all is well with all
Love
Kayla

Kayla has been moved downstairs, (hopefully until we move out the front door). She has been feeling extremely tired the past couple days. Her platlet count is low, she has become pretty anemic. They will be giving a blood transfusion over a six hour period. The doctors feel that will give her the boost she needs.
She would really like to go back to school. She will have to wear a mask, but she said that will not stop her from going.
Take Care
Rick & Jeneice

Hi Everyone,
Kayla is out of ICU, we moved to the 4th floor(surgical), but we will be moving back to the 1st floor at about 5:00 p.m.
Kayla is recovering from all kinds of bugs. The chemo suppressed all but .9 if her white bloodcells.
The Drs agree that Kayla is not a "Protocol", she needs one just her own.
We have put that part of treatment on hold. The next 2 weeks we will focus on her infections. She cannot have any flowers, dirt or other creatures near her for a while. They have started to decrease her steroids at night. The daytime steroids will be a slower process.
We are just praying her underlying disease will be held at bay, then we will have another meeting with the doctors and try to make a medical plan from there.
Kayla received a beautiful new lace & beaded hat from her Aunt Linda, she had to get a new Easter outfit for Church this morning, she looked beautiful!
Happy Easter. Will update again as soon as possible.
Thanks To All
Rick & Jeneice

Hello to All.
Kayla is doing better.
She said this morning, she would like to start exercising so she can, "Mount Up!"
She said her file processor is a tad askew. (Medication Fog)
Our big meeting will be tomorrow at Noon. Maybe we can all come to a meeting of minds.
She has a couple of infections, that may be what has set her back. They are also making it hard to draw blood. They keep coming to look at drawing blood from her feet, but she will not have it! I don't blame her!! (She has also been discussing this with Uncle Chris, who has experienced this!) We feel she needs a little bit of control of her medical control, and this one is it.
Well, we will close for now.
We will update tomorrow.
Rick & Jeneice

Sorry to all for not keeping things up to date but life has a way of getting in the way!!!!
I've been incarcerated in intensive care for the past little while. It seems that I've caught yet another bug that has been wrecking my life as we know it today. Things are looking up today. I can move a little bit without so much pain but the drugs they have been feeding me surrley make me loopeey. O2 sats and blood are still a real issue. I have so many DR'S you would think they could figure this all out. My Dad & Mom are going to have a sit down meeting with all of them in the next couple of days. I will let you know how that goes.
Take Care
Love,
Kaya