Mary's TV Debut

Mary was asked by Dr. Cripe to help with a Channel 13 News Story on Monday, October 22.  Here is the clip from Channel 13.  They asked a LOT more questions and took a LOT more video than what is shown, but we are so proud of Mom's courage to get in front of the cameras!! Enjoy!!

Windford's Update 9/24/12

I found out this information about a week ago, but wanted to fill in my mother and my children first and I have been quite busy since. The cancer drug they had me on to slow it down to see if I could get a chance for a transplant in Chicago unfortunately  is not working and my Tumor Marker has went up tremendously. They have taken me off the drug. The transplant surgeon and my oncologist have conferred and agree that there is no drug or surgery I can survive. The oncologist will regulate my medicines to make me as comfortable as possible. My feet and legs are swelling very bad since my liver is not functioning properly. I am going to another doctor on 9/25/12 to get a liver reduction diet to help with the swelling. The transplant surgeon said God only knows how long I have for sure, but he thinks maybe I can make Christmas and possibly New Years, but the rest of 2013 will be very rough.

Remember the times we laughed and smile for me.

Windford

What's next?

As you know, we've been dealing with Mom's latest relapse. We met with the oncologist today to find out what options exist. Mom is very clear that she doesn't want to spend a bunch of time being sick and in the hospital if it's not going to be good for her quality of life. Knowing that, Dr. Cripe has offered a 7 day infusion (outpatient) that may keep the leukemia at bay for awhile. He said if she tolerates that ok then she'll possibly do another week in 4-6 weeks.
If at any point she doesn't tolerate it well, then they will stop. Either way, she will continue to need blood and platelets. This will help her have energy and feel better. If the leukemia continues to progress and the infusion doesn't seem to be helping then treatment will be done to make sure the symptoms are controlled, but it won't be cured.
She is staying strong and is confident in trying Dr. Cripe's plan. Please just continue to pray for strength, wisdom, and courage.
Much love to all of you!!

Devastating:(

The bone marrow biopsy results are back and the news is devastating...the leukemia is back. The stem cell transplant is not an option. We will
wait to see what we can do, but right now there is no cure for leukemia, so we pray and put our trust in the Lord. I am so proud of how Mom handled the news today and thankful that Dad took the call. Please continue to pray and send support. This battle is NOT over!

Also--please say some prayers for Uncle Ray (Mom's brother) he had surgery yesterday and is now on dialysis. Please keep our family lifted on prayer!

Melissa

Stability!

Dad got the results from his MRI on Friday.  According to the scans, it appears that the liver is stable.  The tumor is still there, but it does not appear to be growing.  In this situation, that is very encouraging.  We are still awaiting the results of the blood tests to see if the tumor markers align with the MRI results, but an signs of stability is good!  We just continue to pray that this tumor does not grow and expand anymore in the portal vein.  That is the best option to get on the liver transplant list--which is the only way to cure the cancer & liver disease.  We are also thankful for this stability after such a grim prognosis just 4 months ago. 
   In other news, Dad is continuing with his retirement plans--refurbishing the house with new windows (and now a new roof thanks to the recent hail storm/damage) and getting a new barn.  He has talked about getting a new barn for years now and after a bit of permit confusion and the discovery that the house is now in the town of Avon, that plan is on for completion by the end of September! 
    In Mom news, she continues to go for regular bloodwork and needs a blood transfusion about once every week or two.  She'll continue with the bloodwork until the date is secure for her transplant (still set for September 11 admission at this point) and then she'll need another bone marrow biopsy.
Much love to all of you for your continued prayers and support!!

Not much new to report...

     In the last month or so we haven't had much new to update.  Dad has been battling a few fevers and has had a quick stay for a few nights in the hospital and a few visits to the ER for fevers.  We're working with his doctor to make sure his medication is helping and now we have a different plan so that Dad doesn't have to go to the ER each time he spikes a fever.  Dad had an MRI this week and Dr. Wagner will be going over those results at the end of the week.  There may not be anything new to report, but Dr. Renz in Chicago wanted to monitor Dad's liver to see if there was growth of tumor in the portal vein.  We are continuing to pray for no new activity in the portal vein.
     In Mom's journey, the biggest news is no news right now.  She was initially going to be admitted in early August, but due to the donor and donor center's availability, her tentative admission will be September 11.  We're hopeful that there are no more delays.  The other thing that this delay is going to cause is the need for another bone marrow biopsy.  Please pray that the results will show that Mom is still in remission!! 

Thank you to everyone for all of your prayers and support.  We will continue to keep you all updated when we have news to report. 

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! 

Terrible Tuesday...

Mom continues her hospital stay with chemo that ran last weekend and this weekend.  Her counts have dropped (which is what the doctors predicted and we hoped for)...so she'll continue to be in the hospital until her counts recover which will probably be a few more weeks.  And just when all of our focus was on Mom and her treatment, we got a bombshell from Dad's doctor.
At his last appointment (April 25th), his doctor wanted to get a stat MRI because dad's last scan showed that his cancer might have spread.  After the MRI, dad's doctor said that the scan may have not been right, so he was sending the MRI and other scans to another team of doctors.  On Tuesday evening, May 1st, Dad was sitting in Mom's hospital room when his doctor called to say that the cancer had indeed spread into the portal vein. What his doctor said is that he will never be a candidate for a liver transplant...and because of his high bilirubin, he can't have the radiation.  His doctor has said he didn't have any other treatment options and gave us the grim news that Dad has 6-12 months.  While that news is utterly devastating, we aren't giving up hope and we will continue to pray that God's timing continues long past these 12 months. Please pray.  Have your friends and your church pray.  We hope that God will be glorified in all of this struggle!
It is indescribable how the staff that are caring for Mom right now have responded.  When they heard the news, they were crying along with us, offering support, and being wonderful.  They took especially good care of Mom that night so that Dad could go home and get some sleep.  The other amazing part is that Mom's doctor made some calls and got Dad an appointment with another oncologist for a second opinion.  We'll see how that goes, but even with the second opinion, there is not a guarantee that there will be treatment options. 
For those friends and family we've told, thank you for your support and your prayers.  That's all we know that we need right now! 

Bone marrow results...

Mom had to have another bone marrow today because the first one did not have conclusive results. The results came back today and unfortunately she still has a significant amount of leukemia:( . The doctors presented two options for treatment--chemo or another clinical trial. The better option right now would be the chemo that includes different drugs that she hasn't had yet. She'll get the ARA-C again, along with VP-16 & Carboplatin. There are some significant side effects that can happen and are likely because we are starting chemo so close to the last round (hair loss, mouth sores, diarrhea, etc.). Again, this is still a risky option, but there would still be a potential option to try something else if this doesn't work. The chemo will start tomorrow and go for three days, then a few days of rest, then three more days of chemo...then we'll wait for another count recovery and get a bone marrow to see if she's cleared enough to go for transplant. Mom will be in the hospital for at least a few more weeks.
Dad had also decided this week to start on disability so he'll be able to be at the hospital more.
Keep the prayers coming...Lord knows we need them!

Preliminary Results

Just briefly, Mom had her bone marrow biopsy today...after several attempts:( It might take 3-4 days to get all of the final numbers, but the preliminary results are disappointing. It appears that there are still blasts:( Pending the final results we will need to decide the next steps. We will know more when we can get the information from the doctors and then we'll need to make our decisions. We appreciate your continued prayers and support. Thank you to everyone!!

Waiting game...

Mom was admitted on the 10th and her chemo started the following day or so.  She only got chemo for about 4 or 5 days, so then the waiting game starts.  This Tuesday (4/24), Mom will get another bone marrow biopsy to determine if this round of chemo has worked.  If it worked, then we wait for the counts to recover and start the road to the Stem Cell transplant.  If it didn't work, then she'll get another round of chemo and we'll pray for it to work. 
We will update more on that front when we know.
Now, for Dad...he has completed the work up for the liver transplant team, which he was doing for the last several weeks while Mom was admitted.  After his PETscan, there was a need for more bloodwork.  There is a potential that he may need the y-90 treatment afterall, but we will know more after he meets with Dr. Kwo on Wednesday.  When we know more about Dad, we'll update too.
Thank you to everyone for all of your prayers.  We certainly believe in them and believe that they will work! 

Admission Time

Mom is back in the hospital as scheduled.  On Monday she had several tests and things that needed to happen before she got to 3 East.  She had bloodwork and labs, an echo & EKG, she had to get a PICC line (which needed to be readjusted after it was placed), and she had to get a bone marrow biopsy--which took 3 attempts.  That is VERY painful for one attempt, so needless to say, after 3 attempts Mom was in a bit of pain.  Later that afternoon she was admitted back to her "hospital home"...3 East.  She will probably be admitted for 4-5 weeks. 
Chemo was scheduled to start today after the labs and tests came back, but there was a bit of a delay with one of the tests, so chemo will start tomorrow. Mom did have to get blood today and she spent the day organizing some photos so she can put together some photo albums (gotta do something to stay busy)! Dad has a busy week this week with tests and appointments too, so he won't be with Mom as much this week.  The good news is that he's met his goal weight, so hopefully we'll be reporting that he's on the transplant list soon.  We'll be sure to update on both of them!!
While Mom is admitted, she can have visitors, emails, cards, and such, but cannot have fresh fruit or flowers.  Her address is 3 East, Room B-14, IU Simon Cancer Center (535 Barnhill Drive Indianapolis, IN 46202-5116).  Her laptop and cell phone are with her, so she can get emails and phone calls--but remember, she doesn't have texting:)
Thanks again to everyone for all of your prayers and support!
Find the C.U.R.E.!
Melissa

This is a long one...relapse is complicated!!

Yesterday we met with mom’s oncologist, Dr. Cripe and his nurse, Katie. They presented the options to our family. First of all they need to get mom into remission (her leukemia needs to be undetectable). This was achieved last time, but it can be more difficult this time as her body has been exposed to chemo and may not respond the same the second time around. Also, we have to watch closely for side effects and infections since this was a serious (near deadly) episode last October.

Step One--Remission

There are two ways they can attempt this remission:

1. Standard Reinduction – where they will give her 2 chemo drugs and she will stay in the hospital 4-6 weeks waiting for her counts to recover and hopefully knocking out the leukemia. She’ll have a bone marrow biopsy to determine this after ~2 weeks. If she chooses this route, she will not be eligible for the clinical trial.

2. Clinical Trial -- where they will give her 1 or 2 chemo drugs and she will stay in the hospital 4-6 weeks waiting for her counts to recover and hopefully knocking out the leukemia. She’ll have a bone marrow biopsy to determine this after ~2 weeks. The reason for the 1 or 2 is that we won’t know if she is receiving the study drug or not. If she chooses this route, she would be eligible for standard reinduction if there was not a good response and she was healthy enough.

With either option, she will need to be in remission to move to the next step. If she does not achieve remission after the first round and she is healthy enough they can potentially go a second round. If she is not healthy enough, we’ll have to have another discussion about what our options are…we do not want to have this discussion!

Step Two—Stem Cell Transplant (aka-Bone Marrow Transplant)

The next step…When mom is determined to be in remission, she will need to have a bone marrow transplant (also called a stem cell transplant—these are not the controversial stem cells that you hear about in the news). The best case scenario for her transplant would be to find a sibling that is a match—fortunately for mom, she has four living siblings. Hopefully one of them is a match and is willing/eligible to donate cells. To determine if they are eligible, there is a simple test that they take and is sent to a lab that specializes in donor typing. If they match, they’ll run testing to make sure they are healthy enough to donate: EKG, blood work, and chest X-ray. To actually give the cells, it is not a surgical procedure, but one that requires some injections over a week’s time and a day’s worth of collection. On the day of collection, they usually show up to apheresis around 8 in the morning. They go through a consent process where they can ask any questions to one of the MD or PA over there. They will get some blood drawn and get something like an IV start in each arm. They will lie in bed while the machine runs, usually around 6 hours or so. The machine will pull blood out of one side and run it through a centrifuge to separate it. They take out the mononuclear layer and give everything else back.

If none of mom’s sibling are a match or eligible, then they would search a national database of people who have signed up to say they are willing to be a donor. If you are interested in helping, you could also sign up to be a donor—BUT you would probably not be helping mom…but you might be helping someone else’s mom, or sister, or dad, or child! Steven and I work with patients every day who rely on someone being selfless and giving their cells to a complete stranger. If you were ever chosen as a match, you would go through a similar process described above. If you would like more information about donating or to read more about what this process is, go to bethematch.org.

Regardless of the donor, the transplant is VERY SERIOUS and can have some extremely dangerous side effects, but given the other option, mom is willing to take that risk right now. When we get closer to that point, we’ll update about the restrictions, etc. that are in place for someone getting a transplant, but essentially mom’s entire immune system would be wiped out and they would restart it with her donor’s new cells.

Soooo, that’s where we are now. Mom has decided that she would like to go through the clinical trial, so she will be admitted on Monday, April 9^th. She will start chemo that week and we wait and pray for the remission to occur! Mom will likely not be back to work this year because even if everything goes without a hitch, she can be immunocompromised for a year.

Thank you to everyone for your offers to help. We know we’ll need lots of prayers, but at this point we’re not sure what else we will need. Watch the blog for more updates!

No news is good news...

We've all heard that expression--and apparently it's been true for awhile.
So now, here's the news...About a month ago, Dad went in for checkup scans. There were new spots in his liver. They did the mapping procedure so they could see how they wanted to treat the tumor. They have decided since they can't see it real clear and they would have to treat the whole right lobe that it would be to dangerous. They talked about starting him on a cancer drug to control the tumor until he can get on the transplant list, but decided last Friday not to use the drug because he would have to wait for a withdrawal period to get the transplant. He is on a new medically supervised diet and it seems to be working pretty fast so they hope to have him on the list soon.
SO, in the meantime, Mom has continued to go in regularly for blood work,etc. She had an appointment yesterday and her blood work revealed that there are blasts (immature white cells) in her blood--this is an indication that her cancer has relapsed. The doctor will meet with us on March 26th to discuss all the results and options. We are all shocked of course, but will wait (probably not very patiently!) to hear what the doctor says. I'm glad that we will all be able to go with her so that we can hear everything--and so I don't try to guess what the doctor will say. Trying not to put the cart before the horse. :) Mom and Dad are both working right now and will keep doing so as long as they can.
We ask for your continued prayers and support--it worked before, no reason it can't work again!
Until then, we will keep praying for a C. U. R. E. (Complete, Unending Remission for Everyone)

~Melissa