Unusual Reactions

There are times in life when all the normals are thrown out the window. When I last wrote Will had just began his Panzem treatment. It was an oral liquid, chalky but bearable. Will began taking the medication on Wednesday the 7th. We returned from Duke the following day thinking this would be an easy medication to handle. Will felt great until Saturday night when some queasiness began. He was in bed for the first time ever when I got home from work at 8pm! I thought it was strange but figured it would be OK the next day. He opted out of church which never happens and began to vomit mid morning on Sunday. All day Sunday and Monday he couldn't even keep water down. We called the doctors on call at Duke and MD Salacz here. The consensus was to stop the Panzem (oral chemo from Duke) for 24 hours and see how that helped.

Will was in the hospital Monday and Wednesday (of last week) receiving fluids for dehydration and every anti-nausea medication they thought might work. We tried 8 different kinds of anti nausea medications. Nothing seemed to help and being off the Panzem didn't completely stop the nausea so it was restarted. Will tried to muddle through his 4 doses a day but never felt like he was getting back to normal.

My good friend Betsie came in town. Friday was the first time Will felt like getting out of the house. We went down-town to take a look at the Dead Sea Scrolls and Will threw up for the last time an hour after his Panzem dose. He said the medication just didn't make him feel right. Life's not that fun when you are throwing up all the time and if you never feel right it is hard to enjoy yourself so we are officially off the Panzem study from Duke.

The nausea and vomiting was an unusual reaction to the Panzem but surely was Providential. Will's last MRI on the 22cnd of this Month showed there was new growth. This means the Panzem was rather ineffective at controlling the tumor even though Will only took it for a short time. With the guidance of doctors and some more prayers we have decided to return to receiving the IV Avastin medication every 2 weeks from St. Luke's. The doctors placed this in combination with a new medication which Will is taking by mouth every day for 21 days then 7 days off called Etoposide. They have had some success with these 2 medications when taken together. We are just praying now that this will stop the growth! Insurance still does not want to cover these treatments so we are praying for favor in that area. We are still going through appeals and writing letters. Another issue in the medical world that makes it just a little harder to deal with the real issues at hand!

The doctors always test Will's kidney function prior to the Avastin treatments since it is known to be hard on your kidneys. For the 9 treatments he had earlier there were never any problems, but now after the Panzem treatments Will's tests showed some mild kidney failure. No kidney failure is mild but this was barely in Stage 2 which meant Will could still receive the Avastin. Having been off the IV Avastin for the past 6weeks we still don't know if this is an unusual reaction to the Panzem or something further. In any regard we will be watching it closely and covet your prayers! All normals really have to be thrown out when you are dealing with individuals!

SOOO for the non-medical which is the most fun - Will's sisters just came in with their 8 combined kids and my friend Betsie. I have enclosed those photos above. You can tell we are quite a crowd wherever the Reno's travel! We are still looking to buy a home and are having inspections done on the new prospect tomorrow. Will, Lynn, and I just bought tickets to travel to see Gail (my little sister graduate) from high school in June. We just pray for wisdom in every step. Will's oldest brother is in town from Colorado with his 2 kids and we have been throwing the baseball and playing games together. Will manned the golf cart this morning for their game. PLUS my parents and Gail are coming to visit us for 2 weeks in April. We are excited! It is just still sweet to be together. Will is back to eating normally and we are thankful. Will and I are glad to have each other and still so glad to have the prayers of those around us! Thank you again for walking through this time with us.

The Trip

HOME AT LAST! It just feels wonderful to be back in a place where we know our schedule and are not waiting for hours for doctors to answer our questions! (not that we are complaining:) Will qualified this time for the Panzem trial! We were praising the Lord for an open door so we just walked through. Panzem is an oral chemo/targeted therapy that Will has to take 4X's a day. The side effects seem minimal at this stage and the most evident is the inconvenience that not eating 1/2 hour before or after the medication causes. So again we are not complaining but the wait on Tuesday to see the MD for 5 minutes was 4 hours. This afford the opportunity to meet a Jewish family who had just flown in from Israel. Their 23 year old son had been diagnosed with a brain tumor the past December and they were flying to all the major US cities to search for the best options. Will's Mom and Dad were traveling with me and being the 'friendly Kansas city folk' as his Mom would say, struck up a conversation. We learned they were taking the same herbal medicine as Will from Mannatech and had some information about some other therapies that we are going to investigate. There was a level of comfort knowing that the Lord let even his chosen people develop a glioblastoma. It made Ruth remember that the Lord has not forgotten....so you can add Ilan Dimant to the list of those to lift up. The Lord will not forget his people. Ilan and his family are in the picture below. He is a measly 6 foot 7 inches. The other is a photo of the four of us at Red Lobster where Will skillfully attacked TWO POUNDS of crab legs. He did have some help finishing!















We are scheduled for a trip back to Duke on April 3rd. They will be doing MRI's every 4 weeks in order to keep an 'eye' on the tumor. We are just praying that this is the therapy that stops and shrinks the tumor. In the interim Will and I will be entertaining and continue to look for a house. We have put the third offer down on a new home and are waiting to hear back from the owners. Will's sisters came in for a surprise visit from Colorado and we were thrilled! His brother and their family come end of March and before that one of my dear friends is traveling in to spend some of Spring in Kansas City. We truly are blessed. Thank you Thank you for your thoughts, notes, and above all your continued prayer!!


1 Corinthians 15:25-26 "For he must reign until he has put all his enemies under his feet. The last enemy to be destroyed is death."


Amen!!

THe Saga

It always seems to me after a MRI report life turns into a bit of a saga for a few days. Apologies for leaving yet another cliffhanger of a blog!

MD Salacz read the MRI on the 23rd of February. The space on the side of the tumor cavity that we were watching before seemed mostly unchanged from the last MRI and the tumor cavity actually looked smaller. This was a praise. Another tumor spot that they had been watching though had gone from 4mm to 11mm. This doesn't seem like much of an increase to some, but significant when you are dealing with the brain. Our scans were whisked off to Duke and then we had the weekend to wait and be patient.

Our doctor is always calm. He likes to say he doesn't get overly excited about the good news overly depressed concerning the bad. This coupled with a peace the the Lord provided, gave us a rather calm weekend and were able just to wait until Monday. We were waiting to hear if Duke had any new cancer protocols or trials in which we could enroll and if not we would continue in Kansas with the Avastin treatments and switch to another drug besides the CPT-11 Will had been receiving. MD Salacz felt the Avastin was still effective since so much else on the scan looked promising and wanted Duke's input.

Monday rolled around and we expected Duke to call by 8am. Ruth wouldn't have minded the early wake up since she was driving to work and had started calling people at 7am. You have to start early if you want anything accomplished with the medical system!! It ended up that most of the medical staff, specifically our contact, convieneiently developed a stomach bug that week! Ruth called 3 or 4 other contacts and just waited for a call back. By the end of the day there was nothing and Will was scheduled for Chemo at St. Luke's the next day. Since we didn't want to just sit around and do nothing to fight the new growth we had tenatively scheduled a treatment, but it was important to hear from Duke prior to administering any more chemo in case that would disqualify Will from one of the trials. We called MD Salacz and he started to call Duke as well.

Tuesday morning came and we postponed Chemo until Wed in order to hear from Duke. A Doctor called around 3pm our time to tell us they had a chance to review Will's scans and Will's disease had progressed. When we heard over the phone that the tumor was bigger and close to the brain stem, not in the brain stem just close, I think it hit home more for both of us. It was just sad. But there was not much time to grieve as they were faxing us the consent for a new trial at Duke with which they had some success with in the past and thought Will would be a good candidate. The new drug is called Panzem and Will would be taking it orally three times a day. She didn't know many of the specific rules and regs of the trial and not knowing when we could actually go to Duke we kept our appointment to receive the Avastin her in Kansas City on Wed. We still needed to contact the head of the trial because if we were going to have to wait for weeks to recive this treatment we wanted to do something in KC now!

To make a long story short the appointment for Will's chemo was moved to Thursday and in God's providence we found out 15 minutes before Will was to leave the house that if he took this next treatment of chemo it would disqualify him from anything at Duke AND that they would get us into an appointment the next week. We felt like then we could at least breathe out knowing we would be doing something physically to fight the growth along with all the praying that had been done the past few days.

So we are heading out to North Carolina tomorrow. Ruth's work has been understanding and given the time needed to make the trip. We will be in the clinic on Tuesday being screened for eligibility in the trial and then hopefully Will is going to take his first dose of Panzem on Wednesday. We say hopefully, but we are praying that whatever the Lord's will is in this situation we will be submissive to. Including just coming home if the trial is not in His plan for Will's next treatment step.

So there is a long blurb. Our flight takes off at 8am. Ruth has spent some time this past weeks just having some sad days just hating the fact that Will is sick. It's been a bit of a battle at times to remember God never promised heaven in this life but instead He 'is preparing a place' and in that place there will be no more sickness of sorrow and the Lord is sovereign.

I just attached some photos at the end. Some are from game playing, others from a gorgeous day at the park when we took Will's nephew Caleb for his first playground experience. The one's where there are a lot of kid's were taken at none other than Applebee's where Will and Ruth both acquired their waiter and waitress skills, separate cities, ten years apart but same restaurant. We introduced Will's older brother's family to our favorite dessert the Maple Butter Blondie. UMMMM!!

All for now. We continue to pray in all things that the Lord be glorified!

"But I have trusted in Your mercy; My heart shall rejoice in Your salvation. I will sing to the Lord, because He has dealt bountifully with me." Psalm 13.5-6

Isaiah 41:10:
So do not fear, for I am with you;
do not be dismayed, for I am your God.
I will strengthen you and help you;
I will uphold you with my

righteous right hand.