the second week of treatment is almost complete. for the most part, today was the same as yesterday. ellen slept quite a bit again. she was awake long enough to do some physical therapy in the form of resistance training. she stayed in bed for it but still worked up a bit of a sweat. it was nice to see a grimace that wasn't related to pain.
some good news: her creatnine count (the number that is related to her kidney function) is still holding steady at 1.3. this is the high limit of normal function, but normal nonetheless.
some more good news: todd decided to stay for a few more days. suzy dropped him off at the airport and when she got all the way back to the parking deck at the hospital and he called her to come back and get him. we're all glad to have him around for a while longer.
some not so good news: the fluid reaccumulated on her stomach again. to be clear, this isn't an indication that her condition is worse, it is more a byproduct of the disease that the doctors said occurs in "about 90%" of patients. they sent her down for an ultrasound and marked the spot for another paracentesis tomorrow. if the fluid does not stay off this time they may consider a catheter that she would be able to use to remove fluid herself.
please continue to send good thoughts. keep posting too. whenever she can, ellen loves to catch up on her blog posts.
hope everyone is well.
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15 comments:
Things (so far) sound like they are a bit smoother this time around. I'm hoping and praying they continue to be that way.
I hope you read my "choo choo" train post because I read that book nightly, but it's gained new meaning for me.
Here's wishing for a peaceful evening.
Angie
Ellen & Ryan,
You're in our thoughts & prayers.
Thanks Angie, my girls are grown, but "choo choo" was a part of my nightly reading 20 years ago & we thought the words were for our children -- what a new perspective they take on!
Keep the FAITH!
Laurie, Matt & girls
Ellen, Ryan and family~
Your friend, Margie Blake, shared your story with some co-workers at the high school; I am one of them. I'm saying prayers of healing and energy for you all as you, Ellen, journey through to restored good health.
Barb Ianni
Hi Ellen & Ryan,
It really sounds like Ellen is doing good this time. That is such great news! I think we were all anxious (like Ellen) with some idea of what to expect this time around; but so far it sounds to be going much better. I pray that treatment continues on this path. Glad to hear Todd is able to stay longer. Hope you all have a restful night and that the fluid isn't causing too much discomfort right now.
On a lighter note, Preston is practicing his "Pledge of Allegiance" right now. You wouldn't believe what his version sounds like! He is also telling us about a girl in his class who is "part cheetah" who chases him on recess and makes cheetah sounds to him. He describes her as having "black hair and is light brown and very pretty". He says she is not in love with him but a little girl named Madison is in love with him. Good to know. This kid kills me!
Talk to you later!
Love Hilary
Hang in there. You are truly an amazing girl and a million people are praying for you.I pray you stay strong and keep the faith!! I hope the anxiey lessens. You deserve some peace. You're both in my thoughts and I wish you well.
Rest well
Ami H
How nice to have your family by your side!
Please know I am cheering you on, stay strong!
You are winning! :)
D. Mishler
Ellen & Ryan,
Another one of those nights, not able to sleep, thinking about things that are going on & you were on my mind so no better time than now to get up & catch up with your blog.
Excellent reports, great to hear Todd (might I assume - brother??)stayed in town for awhile longer.
EVERYONE is striving to show their support for you in one way or another - just when one may think, aw Ellen doesn't want to hear about me - it is great that you count on these blogs for some of your day's highlights - so we all need to keep bloggin away. Hope these blogs help create a smile that creates those endorphines (sp?)that replenish your body's strength. May a little chuckle sneak thru from our comments here & then.
Thou your body is having the side effects from the treatment, your beauty shows through even more, God brings out the beauty despite some of the ugliness that wants to drag on us.
As always - you are on our minds & may this help you thru the days knowing that we are thinking of you amongst our daily activites. We talk about you during the day & may this come as energy for you to know you are with us daily. Amongst all of your bloggers & short of sleeping, I bet it is safe to say someone of all of us is thinking about you every minute of the waking day - let that energy flow into your body!
Take Care,
Barry K.
Hey girly! I hate to admit it, but it sounds like you are getting more workouts in than I am! So nice to hear that Todd is staying for a while longer. The kidney count is amazing! After the last round, I think we all hoped the new combo would keep it lower than it had been. But to be in (and stay in) the normal range that is just great, El!
Hilary' s comment took me back to last year. Maddie learned "you're a grand old flag" for an assembly. I cannot remember what the exact words were, but she had a couple parts that she changed the words around. And of course, her words were "right" no matter what we said. But, then you go to the assembly and watch 150 Kindergarteners sing 150 different versions-it's a hoot!
We also had some playground issues yesterday. Marcus had his first day of school. We are coming home, and I ask if he got in any trouble--he is more of a handful than the other two. Just as serious as can be he says yes- two times! He then tells me that a bunch of the boys played zoombie at recess and the teacher talked to them about keeping hands to ourselves. I am thinking ok, this is not too bad because it was a group thing. So I go ahead and ask why else he got in trouble and he tells me he jumped off of a climbing piece of equipment on the playground and the teacher told him that they are not allowed to do that because some one could get hurt. So now I am thinking that although he had been talked to twice, it was more learning the ropes issues not being mean or hurting anyone. THEN, he starts telling me that his friend from Ycare is in his class and that another boy punched him at recess and he fell down and his knee was bleeding. So now his trouble really seems minor! He really loved school though and said it was so much fun! And, I did not cry-I did not do the happy dance either though.
Today is football day. Tristan's team is playing two games, so it will be a long one. Then on Sunday Brent and his girlfriend are going to come over and we have not seen him in a long time. Monday the kids are running a mile run called the Labor of Love. Tristan's running club is entering, so we registered the little ones too. They did 3/4 mile run during the triathlon, but have never done a mile run before. Marcus will probably run the whole thing and Maddie will run-walk. So our weekend is basically scheduled out, but I would like to go to the lake some too.
Rest up and do your exercises! Energy and prayers coming your way!
Jen
Hi Ellen & Ryan,
Glad to have some good news, sounds like she is doing much better this time. Glad that Todd is staying longer, that has to be a big comfort to both Ellen and Susie, and hopefully Ryan you are getting some rest.
Ryan thanks for all the updates, you do such a great job with the blog, we all love having the info daily. You are doing such a great job of caring for Ellen too....you are a wonderful man and a GREAT husband.
Hope the weekend is a peaceful one and that is passes quickly and that she is on her way back to the loft soon.
Give her a hug & a kiss for us.
Lots of Love & Prayers to all of you.
Jo Ann & Tom
Ellen - Ryan's post sounded like mostly good news. Keeping that creatine count down - that's very good! Sounds like maybe they have a better concoction of stuff this time. That is excellent for you!
The entire city is thinking of you and praying for you. Never doubt that...
Debbie G.
Hey - So glad that Ellen is almost
through with round 2. Also that
the Creatine level is good!!! I
can picture you Ellen with the
grimace from therapy - work, work,\
work, that is all they want from
you, isn't. It is ok though cause
it means you are getting well
enough to do these things. Go Ellen, Go. I am always sending
postive thoughts and prayers your
way. Bob is too and believe me
that is something!!! He thinks a lot of all you guys. He has a doctor appt every week at the
neurologist and he said he and the
nurse there that he sees talked
about Ellen the whole appt the other day. I said, does she know Ellen. He said no, but she saw my
braclet the last time I was there
and she asked about it, so I told
her about Ellen and to pray for her. He said the first words out
of her mouth the next week were
asking about you. See girl, every
one is praying and cheering for you
everywhere. Tell Suze, Todd, Ryan
and your dad I said Hi. Ryan
thanks again for your wonderful
explaining words. I think it is
great that Todd could stay a few
more days. Lots of love & prayers
coming your way.
JoAnn G.
I've got my brclt on!!!
FAITH, HOPE AND LOVE, Always.
Much Love to all of you,
-K. Lanza
To Ellen. Todd, Susie & Todd,
You are all in our prayers & thoughts everyday.
God be with you,
Lynn & Bill Jenkins
Hey Ellen! Good news on the kidney numbers. and how great that Todd can stick around a while longer. Everyone is stronger with their family behind them. Good girl, Ellen. Sleep, rest, heal.
Jan K.
I can just picture Ellen doing her resistance training - same face as kick-boxing in college:-) What a good brother Todd is - I'm glad he's still there! Ryan, thank you so much for continuing to update all of us - it makes me feel as if I'm a little bit closer in distance to you guys! Keep up the fight and know that the prayers are still coming every day almost every minute. Love you guys!
love always, Ashley
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