Highs and Lows

Well, here's an update after quite a spell without one. Mom's counts finally recovered enough to have a bone marrow done on Monday. We received the wonderful news that she is in REMISSION!!! This means that she will proceed to the stem cell transplant after a bunch of tests to make sure she is healthy enough to go through transplant. She'll go through those tests Thursday, 7/26 and probably get admitted on 8/7...that date is not set in stone yet. Please pray that all of that goes well!
On the low note, Wednesday 7/25, was a really rough day for Dad. He was very confused and disoriented the whole day--which can be a sign of hepatic encephalopathy--caused by high ammonia levels. Mom and Amanda brought him to the ER and I met them there. After a few tests, it was determined that his ammonia levels were in fact VERY high, so he is currently admitted at IU downtown. They will give him some medicine and monitor him until his levels are back into a safer level. This is very hard to see because it is SO not how Dad is...so we hope he gets back to normal soon! Please continue to pray that his ammonia levels drop and that he feels better soon.
Thanks everyone!!

Happy Anniversary!!

Happy 37^th Anniversary Mom and Dad!!

 

 

What's the latest?!?

Here's the next round of updates.  Let's start with Dad.  As you know, he was admitted on the 15th.  He had an MRI while admitted and then was able to go home on Wednesday, the 20th.  The MRI revealed that the liver tumor was growing (as would be expected since he was only on chemo a few days before the scan).  The good (?!?!?) news is that it doesn't look like there was growth near the portal vein, so maybe we will see that it is not cancer after all in that area.  Who knows?  Dr. Wagner sent the scans to Dr. Renz up in Chicago so he could have a clearer picture of what he's working with.  We are waiting to see what he wants to do next.  In the meantime, Dad has started the chemo again and it is definitely making him more tired.  He has also been a little confused and wobbly at times, which could be due to high ammonia levels in his liver from the disease and cancer.  There is a medication that he is taking, but Dr. Wagner is going to increase the dosage to help with that--the biggest side effect from that is diarrhea, because they're trying to keep the liver/bowels cleaned out.  Please pray for some relief from this fatigue and confusion--it is very frustrating.  But, Dad is still trying to be active--going to dinner with family, going to graduation parties, etc.  We just continue to pray for good options from Chicago and minimal side effects!! 

On to Mom's update...she looks great!  Her counts are sllloooowwwwlllllyyyy improving:)  She is now able to go more than a week without needing blood and platelets.  In fact, her next appointment isn't until July 5th.  As they watch her counts, then they will determine when they can do the next bone marrow biopsy to determine whether or not she is in remission.  She has to be in remission to move to the next step--stem cell transplant.  If she does not acheive remission, then we're looking at a whole different kind of battle!  The good news is that there was a donor found somewhere in the world that matches her on all 10 of the determining levels!!  This is the very best case, considering the scenario.  The other good news is that while Dad is not feeling the greatest right now, Mom is starting to feel better--I mean, neither one of them are going to run a marathon, but considering all that's going on, hey...you take what you can get.  Mom even played a round of corn hole this weekend at Kyle's graduation party.  Please continue to pray for REMISSION!! 

Also, speaking of remission--the shirts are back IN.  Please let me know if you are still interested in purchasing a shirt, I know there were several of you out there who were interested and we sold out before we got to you! 

To wrap up, all we can say is THANK YOU to all of you for your continued prayers and support!  Our entire family is so appreciative of the calls, texts, cards, messages, comments, and more.  We are grateful to have such wonderful friends and family. 

We'll keep you posted!

Be the Match

We have good news…they have found a 10 of 10 match for Mom’s transplant---so now all we need is to get her into REMISSION!  We will have more updates later, but today I’d like to share an opportunity for you!  Even though Mom is lucky and has found a match, countless people go unmatched and lose their battle.  If you’ve considered becoming a donor, this is a great chance for you—TOMORROW!

 

The NMDP/Be The Match Registry will be at Riley on Tuesday, 6/26 from 11a-230p in the Atrium for a Bone Marrow Drive. There will be representatives from the Indiana Blood Center/Be The Match Registry to explain the process of getting on the registry as well as kits available to swab the person on the spot (cheek/buccal swab) if interested. We have several patients currently on our Waiting List who desperately want to come to transplant but who do not have a family or unrelated match for whom this could make a life saving difference. Important note: though the flier indicates a $10 donation is requested, it is NOT required and no donor will be turned away regardless of their ability to pay. They do, however, have new donor age restrictions- you must be between the ages of 18-60 to enroll on the registry.

 

Aside from the age restrictions, this Donor Drive is for everyone: friends and family of Riley patient's and staff. Please pass along this info to anyone you think may be interested in attending. Please let me know if you have any questions. Please see attached flier regarding details of the drive.

  

 

 

Windford's update

Dad was running a fever Friday night, so he went to the ER. They ran tests and ct scan to make sure everything is clear. It may be a reaction to this new chemo drug he started or it could be an infection. After preliminary results, they decided to admit Dad to watch fever and start antibiotics Dr. Wagner, his primary oncologist is actually on service this weekend. The crazy thing is they admitted him to Mom's room last admission! We know they'll take good care of him.
When Dr. Wagner rounded this morning she said the CT scan last night looked different than the previous scan, so they want him to get an MRI. That may not happen until Monday if they can't get someone here on the weekend to do it. He's having a little bit of stomach pain, so they're giving him morphine for that and he's on antibiotics for possible infection.
Please pray for the fever to respond to these antibiotics and that he can get the MRI soon so that he might get out of the hospital quicker!!

-Melissa

Quick Updates

Just a quick update... Mom was discharged from the hospital on Friday. We had a great weekend and she was able to go to the Humphrey race party! Mom visits the clinic twice a week now to get bloodwork done--if she needs blood or platelets then she gets those too. We are still looking for a match for her! Please consider joining the marrow registry!! Bethematch.org!
Dad went to University of Chicago last week as well. They gave him some options to consider while he waits to be rescanned in a month. Dad will leave today for University of Michigan and meet with their team tomorrow. Please pray that they have viable options and that there are no significant changes in the scans through this process!
Thanks for all of your support and prayers! God hears us!!

5/20 Update

There hasn't been much to update in the world of the Williams Family.  Mom continues to deal with post-chemo side effects--including loss of appetite, fatigue, spending lots of time in the bathroom, and hair loss.  Mom decided she was tired of dealing with the hair falling out, so she had Amanda (and Andrew) shave her hair....it just so happened to be Mother's Day:( 
Her counts are still pretty low, so she'll wait all of this out in the hospital.  In the meantime, there were no sibling matches for a bone marrow donor, so we are praying that there will be a donor in the National Marrow registry.  Several people have asked if they can be tested to see if they are a match for Mom, and the answer is no.  However, you can register to be in the registry by going to http://bethematch.org.  This means that you would be willing to donate to anyone(someone else's brother, mom, or child) that needs it and matches with you (for perspective Steven's been in the registry over a year and hasn't been called to be a donor for anyone). 
On Dad's news, he will be heading to Chicago to meet with with some doctor's for a second opinion.  Joe and Jerry will be travelling with him, so please keep them all in your prayers for safe travels this week.  Also pray that the doctor's have some promising news!!
Thanks for all your care and concern!