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Prayers for Alison

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DejaVu

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Some years back, Brian Simon from South Dakota posted on Ranchers. I don't know what name he posted under. His daughter, Alison, has had some tough health issues which required a kidney transplant. He asked for prayers for her here on Ranchers. There were updates on CaringBridge.com. A few days ago, I received a notification from the site that Alison was back in the hospital. Tests are showing Burkitt Lymphoma. More tests are being done to determine the course of treatment. Alison is a senior in high school this year.
Without Brian and Colleen's permission, I am asking for you to take a moment and say a prayer for Alison. I don't know the family but that's not a requirement for a prayer. They could use a little help again.
Thanks.
 
Notification this morning from CaringBridge:

Today's lumbar puncture (LP) went just fine. They use anesthesia that puts you to sleep but you still breathe on your own, not like in the OR when they need to use a breathing tube. I could have stayed in the room during the LP, but those who know about my fear of needles won't be surprised that I waited in the waiting room! More chemo was injected into the spinal fluid to maintain her cancer-free spinal chord.

We found each other a touch boring today after having family and friends with us over the weekend! :) Several employees who know and love Alison stopped by to see her, though! We couldn't be in a better place for Alison's physical and emotional well-being. Such a wonderful staff here at Sanford's Castle!

This evening, Alison was in virtually no pain and she fell asleep soundly about 9:30 tonight. That's the first time that's happened since we arrived here just over a week ago. What a blessing!!

Meanwhile, I read the section on treatment and side effects in a binder Dr. Wagner's nurse, Ashlee, gave us today. A fair amount of "no fun" ahead, but we try to focus on the life she'll have back again after treatment. I was hoping to get an initial plan for treatment early this week, but it turns out we will have to wait until Friday. A CT scan is planned for Friday morning to determine how the lymphoma is responding to the chemo treatment. So, we hope to have a tentative treatment schedule for the next few months by Friday afternoon sometime. In the meantime, I'm guessing I will get beaten at Mario Kart a few more times! She has a broken blood vessel in her left eye that causes her headaches and an IV in her right hand, so she hasn't been able to read, draw, or write much yet. Hoping to see those issues improve soon.

Uh oh! It's a few minutes past my bedtime! Good night, all! Thanks for the prayers!!
Love, Colleen
 
Latest Update:
Take that, lymphoma!!
By Colleen Simon — 1 hour ago

Guess what?! Dr. Wagner is pleased with the CT scan from this morning because it shows the cowardly lymphoma is surrendering to the chemo already!!! We are so happy to confirm our suspicion that we have been on the right track and making progress!! Praise the Lord! Alison is now off constant pain medicine - only on an as-needed basis now! Remember that EBV level of 1.6 million? It's down to 399,708 now - a big drop, but a ways to go yet to reach the "negative" status of <200. But, it's great progress!!

Dr. Sanders has been monitoring Alison's immunosuppressants that she takes to protect her kidney. She has always taken two types, but one type has been dropped for now. Myfortic can lower white blood cell counts, and with the chemo already doing that, it seems it's better to stop taking it for the time being. That beautiful kidney continues it's stellar performance!! :)

Hard hitting chemo starts this coming Monday. Alison will have 6 days of chemo, as well as 3 lumbar punctures during the week to check spinal fluid and deliver chemo directly, keeping the spine cancer-free. During one of the lumbar punctures, her doctor will also check the bone marrow in her hips to confirm progress made there. After the week of chemo, she will have 3 weeks off during which she can go home. If she gets a fever or symptoms of illness, she will have to return to Sioux Falls right away. Otherwise, we hope the blood work will be good so she can attend school. The ANC blood number indicates her level of immunity. The normal amount of ANC is 1,500. If the ANC drops below 500, she will not be able to go to school or other crowded places. The drop in ANC tends to occur the first 2-3 days following chemo, then her body will recuperate. We remain hopeful!! Alison is also glad that she will be home for her 18th birthday October 11th!! After that, she can sign her own hospital papers! ;)

The second round of chemo will be just like the first. Beyond that, I can't give exact details, yet. Alison's doctor talked a little bit about it, but I'm one of those visual learners who needs to see the plan on a calendar or list. :) I will be requesting that from her doctor's nurse next week. Dr. Wagner is optimistic that she will be able to work Alison's chemo treatment around the trip to Louisville, KY. Alison was chosen to sing soprano in the National FFA Chorus at the National Convention the end of October. I'm guessing Brian or I will need to go along - aw, shucks!! :)

I went with Alison and our dear Child Life ladies to the boutique this afternoon. Alison had fun choosing a way-cool wig for the inevitable loss of her hair. No one can say for sure when that will happen, but this way, she's prepared at any time. Ya'll are gonna' love it! :) She also picked out a cool hat. Alison is one stylish young lady!! I'll be the fashion-challenged old lady in her shadow!! ;)

My mother-in-law, Carol, sent me back here with her cherry kuchen, so we've been busy consuming that, gaining health from it's curative properties!! Nobody makes it better, let me tell ya!! I also delivered flowers and balloons to Alison from her senior classmates that they ordered from Ellen Logan! They are beautiful and Alison loves them and is inspired by them! When we were here before, Alison stayed on the Pediatric Intensive Care floor where they didn't allow flowers in her room. I was hoping that was a PICU rule only, but it turns out they have to keep them out of regular Pediatric rooms, as well. They are right outside the room, but that may be something to keep in mind for future gifting. Keep those hugs and prayers coming, too!! We rely so much on you!! Thank you!!

It shouldn't be long before I manage to get a fresh photo or two on this site. I foresee some opportunities this weekend and next week. ;)

Much love to you and prayers for your good health,
Colleen
 
So glad the treatments are doing what they are supposed to do. And isn't it great that it can be done in Sioux Falls rather than some far off place? Prayers for relief of pain and for healing and getting home asap.

mrj
 
Update:
Quick report!

Alison is handling the hard chemo like a champ - fists up, ready to throw punches! I can see it's beginning to take it's toll, so do keep her in your prayers for strength and endurance. She hasn't been nauseous or had other noticeable symptoms, yet, and has felt pretty good overall. I am leary of what's around the bend, you know? Not knowing exactly how she'll react is somewhat unnerving for this mom. Okay, so it seems I need prayers for strength and endurance, too! :)

LP went well yesterday - she recovered nicely and got her Health and Wellness homework done. She laughed about having Health and Wellness work to do! Kind of what we're all about!! :) We have had some sweethearts visit us bearing gifties, and more gifties have come in the mail. Thank you all so much! You may want to start using our home address, though, as I'm hopeful she'll be feeling well enough to go home in a few days! Yahoo!! :)

We have been enjoying watching the Pope on TV! What an incredible treat to have him visiting the U.S.!! We were wondering... If you receive communion from the Pope, are you good? All done? Ha! Can't imagine how joyful that would be!!

Keep the prayers and hugs coming!! Love you all!! Colleen
 
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
 
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.
 
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.

mrj
 
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
 
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
 
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

Brian
 

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