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