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Re: Prayers for Alison

Posted: Sun Sep 27, 2015 7:08 pm
by DejaVu
Hello, prayer warriors!

So, the title Alison and I came up with pretty much sums it up! Giving someone poison to cure them... What could go wrong?! Alison's back pain has subsided, but isn't gone. Headaches persist. However, the most significant side effect would have to be overwhelming fatigue. WOW... I've never seen Alison this tired, and that's saying something since I was with her while her kidneys were failing in 2011. They say cancer patients rebound after treatment, but how many days that takes seems to vary greatly. Forget planning, forget schedules, baby! Everything's up for grabs! :) I can't describe how bad this anal planner's eye is twitching!! Ha!! Honestly, this is similar in so many ways to when she had Wegener's disease and renal failure, that I'm not as sidelined by it as I would have been otherwise. But, still... Both Alison and I will miss our steady calendars. She didn't fall too far from this tree, after all! :)

Dr. Wagner and the nurses sure seemed positive that Alison would be able to attend school this coming week. Now, I'm having doubts. This is tough, but so is Alison, so maybe her body will rebound quickly in the next 18 hours and surprise me? I'd like that very much!

So, prayer requests for a quick rebound and stamina to go to at least a half day of school, please! Alison also has a blood draw before school Monday morning, so prayers for good results, too!

Thank you!! You are dear to our hearts!! Love, Colleen and Alison

Re: Prayers for Alison

Posted: Sun Sep 27, 2015 8:05 pm
by gcreekrch
Our prayers are with you.

The removal of a Macroadenoma from my head this summer is insignificant to what This brave young lady is enduring. You have all the support I can send from this distance.

Re: Prayers for Alison

Posted: Sun Sep 27, 2015 9:46 pm
by Faster horses
Renewed prayers for Alison going up........

Re: Prayers for Alison

Posted: Mon Sep 28, 2015 6:56 am
by mrj
Prayers for both Alison and you, Colleen. It must be such a challenge to keep up your strength to keep both of you going. I know it is easier said than done to relax into the arms of faith when one needs a break from the stresses of illness of a family member, but it is also what enables a person to keep on going and giving our strength to the person who needs it. It is the privilege of the group here to hold you both up in our prayers.


Re: Prayers for Alison

Posted: Tue Sep 29, 2015 10:30 pm
by DejaVu
So, the blood draw Monday morning in Gettysburg showed what I had already suspected. Alison was unable to drink enough fluid over the weekend and was dehydrated. She was ordered to drink a liter of water on our way back to the Castle, and she did very well. Once she was checked in, they gave her two liters of fluid and got those blood draw numbers back up. One that dropped, though, was the hemoglobin, so she received blood today. Thank you to all who donate blood!! :)

Alison needs to meet some of doctor's goals in order to go home, primarily being able to drink enough fluids. Headaches and backaches seem to interchange - she seems to always have one or the other. The back pain, we learned, is mostly from the chemo that has been injected into the spine with each LP - not from the LP itself. This may also be the reason for the headaches. This sort of pain is hard to manage and leaves her feeling uncomfortable a lot of the time, but she seems to get the most relief by receiving the drug Ativan. Still experiencing fatigue, too, but we'll see what another good night's sleep does for her. I'm hoping she will be "pardoned" by the "warden" tomorrow so we can head home, but as we're going down Lymphoma Lane, we know there will be more unexpected turns and bumps in the road. Thanks for riding with us!!

Prayer requests for more energy and a clear head, especially for Alison, but for me, too!! :) God's blessings to you!! Colleen

Re: Prayers for Alison

Posted: Tue Oct 13, 2015 9:16 pm
by DejaVu
Tough day, but she's tougher :)
By Colleen Simon — 1 hour ago

Here's hoping you prayer warriors are staying healthy as this flu season begins! I actually feel pretty isolated from it here at the Castle - I'm a little afraid to venture out!! But, I will have to leave the children's hospital at some point in order to get a flu shot... Alison received her flu shot October 5th, so she's covered. :)

My inner planner is somewhat satisfied again! Nurse practitioner Ashlee provided the if-the-blood-work-is-good-this-should-be-how-it-goes schedule! So, I'll pass it on to you, but if you're not into schedules, you can skip to the next paragraph! Don't worry, I won't be offended! :)
Oct 12 - she had LP with chemo, rituximab, vincristine and prednisone (prednisone goes all week)
Oct 13 - methotrexate... This one caused the tough day today. It is the only time it's given this week, AND, it's not on the list for round three! She won't miss it any...
Oct 14 - leucovorin, cytoxan, LP with chemo
Oct 15 - cytoxan, rituximab
Oct 16 - cytoxan, LP with chemo (Also, no LP scheduled for next round! Phew!)
Alison will, most likely, stay the weekend here at the Castle to make absolutely certain she's hydrated and doing as well as possible, especially due to the upcoming "Trip of Hope" to Louisville for National FFA Choir and Convention! ("Trip of Hope" is something I just made up - seems appropriate!) Then, labs will be checked a couple times before she leaves for Kentucky. Upon her return, we will stop at the Castle on Nov 1st for labs and wait a short while for the results. If the labs look good, she'll be admitted to start round three on Nov 2nd. If labs show she's not ready, then we'll head home and check labs until they look good to start again. Clear as mud, isn't it?! :)

The bottom line I learned today is that her chemo is hard-hitting because Burkitt Lymphoma/leukemia grows so quickly. You have to step on the speedy bug, then twist your foot around on top of it for quite awhile to make sure you kill the dead thing, then flush it down the toilet! Her length of treatment, therefore, should be shorter, but also more grueling than treatments for other types of cancers. After round four, I believe, is when scans and tests will be run to see if there are any areas of active lymphoma. Subsequent treatment will be discussed at that time. Please hang in there with us! We need your prayers and hugs!! Thank you!!

Peace be with you!! Colleen

Re: Prayers for Alison

Posted: Tue Oct 13, 2015 9:41 pm
by Big Muddy rancher
Pulling for you Alison,Stay strong and have a great Trip of Hope.

Thanks DejaVu

Re: Prayers for Alison

Posted: Sat Oct 31, 2015 7:13 am
by SMN Herf
I want to thank all of you that have been praying for or have prayed for Alison. I am truly amazed and humbled that people would do that even though they haven't met her. I haven't checked in here as much as I used to do but I always felt that there were some of the greatest people on this site.

As for an update, Alison, did not make it to the National FFA Convention to sing in the choir. She is recovering in Sanford Hospital from the side effects of her second round of chemo. Her blood work has been good but mouth and throat sores have impeded her recovery. She is very disappointed but her health must come first.

Thanks again


Re: Prayers for Alison

Posted: Sat Oct 31, 2015 9:06 am
by Big Muddy rancher
I hope the 62,000 strong at the FFA said a prayer for Alison. That would be powerful.

Re: Prayers for Alison

Posted: Sat Oct 31, 2015 5:30 pm
by Soapweed
Alison is a real trooper. Continued prayers for her and for all of you. It is a tough ordeal, but you all are tougher.

Re: Prayers for Alison

Posted: Sat Oct 31, 2015 8:35 pm
by DejaVu
Update tonight.
Happy Halloween! Bay Max from Big Hero 6 is who Alison will be dressed up as today - perfect choice for a costume, if you've seen the movie! I will post a photo later if I manage to get a picture.

Alison ate half a bowl of oatmeal last night! She tried a bit of food this morning, but her stomach feels upset - her system will take some time to get used to food again, I'm sure, after so many days of not being able to eat. So, what's the next best thing to do? Yep, she's taking a nap! :) Alison's face and lips aren't swollen anymore, so we know there's a lot of healing going on inside. She just needs more time and more rest. Overall, she says she's feeling better, and that's what counts!

Other than that, we both are having a hard time believing tomorrow is November! Time flies when you're in the Castle of Care! We are hopeful that we'll make it home this coming week for a much deserved break and time with Brian and Loretta. Please pray for painless input and output for Alison, as that is the main obstacle keeping her here. Praise God for the super great blood test results! He is the Great Physician! <3

Have a Boo-tiful day!! Love, Colleen

Re: Prayers for Alison

Posted: Sat Oct 31, 2015 9:34 pm
by Faster horses
So happy to hear she is feeling better.....and of course..........continued prayers.