Summertime

Greetings to all! I think the last blog of any worth information wise, I had just returned from the trip to India and was on the way to teach VBS for the week. There was a bit of natural trepidation transporting third graders but the class was such a blessing. They came every morning (sometimes screaming) 'Vacation Bible School is so cool.' Made me excited to be there. Theologically it was perfect for the stage I am at in understanding who God is and why he does what he does. (Not that I understand) There were short verses to memorize and even shorter truths to remind us what God is like. God is good. God is strong. God is with us.....

I can't remember the sequence if it was before or after VBS....I think before but we held the first ever Willis P. Memorial Golf tournament. In 2006, when Will was first diagnosed with brain cancer, some of his bothers and sisters went golfing. I think that really was the first ever Willis P Golf Tournament. We put that picture right next to Will's bed in rehab. They had three fingers making a W.

Will would have loved to just ride in the golf cart for this tournament. There were about 80 of his friends and family tooling around a reserved golf course. It was the first time I had ever golfed (minus Will and my trip to the driving range) and it can be said that I did not golf under 100! Actually I am not sure if I would have made it through the course if it had not been a scramble. My friend Emily Ann came in and used Will's clubs. We had a wonderful day. It was a day to remember Will and do some golfing which he loved. I learned though that it was a quiet sport, at least when people are teeing off. There is so much to learn......



The next week I caught a plane to Colorado and rented a car to travel down to Gunnison for the Reno family reunion. They have a reunion every two years but since Will was not able to come last year, they planned one for this summer. It was a hard but sweet. Sweet time being with so many people who loved and missed Will. Hard because he wasn't there. He continues to be missed daily. Will would have been proud as his brothers, dad. and nephews taught me how to shoot a shotgun and gave me credit for hitting more clay pigeons than I did:)

His nephew, niece, sister and brother-in-law were baptised in the river near the Reno's houses. The scenery was amazing and we spent most of the days outdoors. The fourth of July fireworks displays reminded me of the first time Will put his arm around me at the fireworks display in Nashville by the river. His brothers and I ran in a race nearby the cabins in Crested Butte that morning. It was a wonderful week with people who have become family.

I came home and started work on the 9th of July. My co-workers and some of my patients even have been caring and considerate, sweet and thoughtful....yet it is a return to 'normal' life without Will. A new kind of normal. Getting used to this slowly. Being in the world and not of the world is always a challenge. I knew having Will to go home to was a huge source of joy; but I did not know to the extent until he has not been there. Loving the unlovely and caring for those in need. That is much of my prayer these days. I am sometimes the unlovely:)

The grave marker was placed shortly before my 25th birthday. I was leaving for Nashville and able to see it before I took a small vacation. In some ways seeing the marker with my husband's name makes his death more real and in so many others it is most unreal. I look at the door expecting Will to come home, or wonder after a day at work if he is going to call. He is still here, in my heart, as cliche as that may sound.

The trip to Nashville was a great time to see some wonderful friends and just have time to be with people who have know me for a long time. I missed seeing quite a few friends which is why I will have to go back in the not too far future. Gail, my little sister, is coming to live with me in KC so maybe we will be able to make a trip together. Below is a photo of the best caramel cake I have ever had and Emily Ann with some balloons which made me smile after a late night trek to Tennessee. It is good to have friends who love you and who you love. That is a gift from the Lord.



Other than work I have been trying to get myself invited to the lake as frequently as possible. Besides a friend cracking three of his ribs and a collapsing his lung it has been a great source of joy. Linda and John have been more than generous in taking me out on their boat. We were able to take my nephew out and teach him how to ski for the first time. He did a super job and was a quick learner. I wished Will was there to see him get up! If it is not obvious I think and miss Will all the time. There seem to always be a remembrance of something we did together, wanted to do in the future, or I wish he was there to do. It was such a blessing to have him in my life. I know that is grace. Truth is what there is to focus on now.

Third Grade

I am not sure what I think about concerning updating the blog after Will is gone but I figure those who will still be checking will be praying. Will and I had planned a trip to India with my older sister in CA to see my younger sister Gail graduate from high school. She did a wonderful job and has become a beautiful lady. She won awards for being the most sporty and 'school colors' which meant she represented what Hebron school stood for. She loves he Lord and she looked out for those younger than her. Gail did a good job being away from her family continuing to trust that God would protect and love her as she reached out to others.

It was a long but good trip. We returned to CA and I spent a few days with my grandparents and then some with Lynn and Abigail. She is growing up. This may be some of the more difficult parts of loosing Will. I feel like my world has still stopped as I look for him around the house and think that just maybe I will see him sometime when I am out. Airports are excruciating. I know he is gone but it stops my heart to see another pilot thinking it might be him.

So I am home. In our home. There are hard and good things about being in Kansas, the state that he loved. It was the real heartland to him. This week I will be working at Vacation Bible School at church. Third graders will make up my group and I know the Lord has plans and good things for those who love him but I have never not understood more what those plans are, so prayers, just prayers for good days and grace and whatever else you can think of would be appreciated. I don't understand much these days but just keep putting one foot in front of another. It's a ton harder without Will by my side but just one day at a time. Thank you for your continuing prayers. I know those in third grade thank you as well.

The Saddest Thing

Sweet friends and family, it is with the saddest heart that I write today. Will left us to be with the Lord on Friday, May 11th around 3pm. We called an ambulance early Friday morning to take Will to the hospital. There were some acute changes and we thought we would go to the hospital and then Will would be able to come home after they gave him some medication or just did something, anything to help. He was shaking so we thought maybe it was a seizure. The paramedics put Will on a stretcher from the bed and I was able to stand over him and just tell him that I loved him. He looked up with one eye and told me he loved me. That was the last time I heard him speak. He was able to look at me when he was on the gurney entering the ER and squeeze my hand.

I know he is with the Lord now. I had visions before he passed away of him being complete - able to work with the ultimate carpenter Jesus Christ and fly fish in the streams. Now that he is gone the visions are more difficult to hold onto. Death truly is a sting, a terrible loss. I continue to look at the door and expect him to walk though with that huge smile and hold my hand or give me a sweet kiss. It is harder to take one step in front of another when he is not at my side. I just pray for faith and cry. Thank you for continuing to walk through life with us and now death.

We have planned a visitation for Tuesday night at Penwell-Gable Funeral home in Olathe, KS located at on the corner of 143rd and Blackbob. (http://www.penwell-gabel.com/ - obituary is posted here. Click on Olathe) There will be open visitation from 6-7 and at 7 we wanted just to have a time to share and remember Will. The Funeral will be at the same location on Wednesday at 4pm with the burial service to follow.

Will loved the Lord and I just loved him. Its hard to be anything but sad when I know I have lost my best friend. I just long for the day when I can see him again. I know at the same time I will see our Savior. Faith would not be faith if it was in the things seen. I just continue to have faith that the Lord's words are true Jeremiah 229:11 For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future. 12 Then you will call upon me and come and pray to me, and I will listen to you. 13 You will seek me and find me when you seek me with all your heart."

Love to all.

Keep Stepping

It seems that once a month is realistic in my ability to update the blog site! Some days feel like a year has come to pass in those 24 hours and others we have been able to just enjoy the hours. My family made it safely across the miles with all their luggage and just in time to enjoy our Kansas City special for Easter...20 degrees and 3 inches of snow! A little bit of a change from the 80 degree weather in Bangladesh:) We were able to take a trip to the park on Easter day as it warmed up to play some football and just mess around. There is a gorgeous lake about 20 minutes south of where we were living and the pictures here are from there.

The week before my parents and Gail arrived, Will began having a bit more trouble speaking. We had just received the results of MRI #? and the tumor growth was small, almost unremarkable. MD Salacz heard our concerns though about conversation becoming more difficult for Will and switched Will's oral chemo to cyclophosphamide vs. etoposide while still giving the IV Avastin. We were just praying this one now would be effective. Mom, Dad, and Gail were able to go that Friday with Will and I to his chemo session. It was special to have them all be a part of that piece of life.

Even though Will was having more difficulty communicating there are some things in life where words aren't as necessary such as Easter cookie decorating! Gail and Will had a ball with the frosting and left just enough for a snack that night!

Abigail and Lynn arrived in time to let the 3 travelers get over their jet lag...Well almost....As you can see we just enjoyed being together!

Abigail has just turned 15 months and gave us many opportunities to run around and adore her. She has a darling little smile and just loved her grandad and uncle Will! She loved to be fed by anyone, favorite food being cheese, and would run up and cuddle for some sweet times on the couch. Mostly though, her time was spent running from one room to the next trying to explore all of the new fun things in this house.
Abigail is still learning to play with all of the new cousins....:)

while Will, Mom, and Gail did just fine! Soccer in the front yard was a favorite and hours of monopoly on freezing spring days were our pastime until we gave the family a whole new project to undertake..........

MOVING.....!! We did buy a home in the middle of April and my whole family was there to see the new place. We rented a truck and people from our church and Will's family came to load the truck at the duplex and unload it at the new house. We were transferred in a matter of hours. What a blessing! There is a lopsided photo below and if we take any more we can post them at another time but it just give you a little idea of what the new Will and Ruth Reno household looks like! (As well as what Dad looks like after a day of moving)

Cousins (the one cousin that even shares the name Ruth) even came from Texas on their way to Chicago to give us their fridge!

I can say for the most part we have moved in. The house had everything we were looking for including a stone fireplace that we were so intent on having in a new home. It seems to be very providential in timing to have a first floor master bedroom and bath that leads into the kitchen, living room, laundry, deck, and just 2 stair in and out of the house. Will's trouble talking has progressed to also having difficulty walking and with balance. There have been many changes over the past few weeks including not always being able to know what Will is understanding. There are times when we can tell he comprehends everything and just can't express and others where we are just making the best decisions with the wisdom the Lord has given us for that day.

On Thursday the 3rd we made another trip to MD Salacz to discuss the MRI from the 2cnd of May. We met with a doctor at Kansas University where we are going to transfer care to when MD Salacz goes to Duke. She recommended with so many changes we should get an MRI to see if the Avastin was effective any longer. It did not come as a real surprise but did come with great sadness that the new MRI showed the tumor has progressed significantly. Not only that but the Avastin has been causing some bleeding in Will's brain as well as there is swelling in the ventricles of his brain.

We sent the MRI to his neurosurgeon who had completed the past 2 surgeries just to see what he thought. His input was that since the tumor is close/intertwined with several intricate brain structures, the recovery from the surgery would outlast the benefit. We continue to look into other options in Birmingham as well as at the NIH in Bethesda but are having trouble weighing the consequences of dragging Will around the USA and beyond. If there was a sure treatment we would travel ANYWHERE but our goal is to have good time together and ultimately healing is up to the Lord. We just continue to pray for wisdom.

Will and I were reading the other night before bed and our devotional had us read Isaiah 43 which is titled : Israel's Only Savior. Verses 1-5 are as follows: " But now, thus says the LORD, your Creator, O Jacob, And He who formed you, O Israel, "Do not fear, for I have redeemed you; I have called you by name; you are Mine! When you pass through the waters, I will be with you; And through the rivers, they will not overflow you. When you walk through the fire, you will not be scorched, Nor will the flame burn you. For I am the LORD your God, The Holy One of Israel, your Savior; I have given Egypt as your ransom, Cush and Seba in your place. Since you are precious in My sight, Since you are honored and I love you, I will give other men in your place and other peoples in exchange for your life. Do not fear, for I am with you; I will bring your offspring from the east, And gather you from the west."

I am not sure still how all of the promises made to Israel transfer to the church now, but I know God was faithful to the wandering children of Israel and he fulfilled his promises. He has promised to never leave Will and I and never to forsake us since we are his children. The Lord never told us it would be easy but I often balk when it seems so tough. We will not be burned drowned or left alone. The Lord will be at our side and although I don't see why all this is happening I know ~ "Now faith is the assurance of things hoped for, the conviction of things not seen. 2For by it the men of old gained approval. 3By faith we understand that the worlds were prepared by the word of God, so that what is seen was not made out of things which are visible." So we continue to pray for faith and more and more of it for we truly are blessed. Christ came for us and on top Will and I still have our families, each other, and the love of our Savior.









Thanks for lifting us up as we put one foot in front of the other!

You can find us now at 928 E Elizabeth St.

Olathe, KS 66061

(913) 972 3130 (ruth's cell)

829-4459 (home)

221-6287 (will's cell)

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.

February 2007

Happy Valentines day a little late and all the Holidays in between we missed! It is less than a month later but I feel as though we left you on a cliff hanger last time! After finding out that the reason Duke had not responded was that our scans had been sent to MD Anderson vs Duke, we waited an extra day prior to starting the radiation therapy. The physicians assistant called from Duke and reported after reviewing the scans his adamant recommendation would be that we continue with the chemo and not do the radiation therapy. He wanted us to just recheck the MRI in 6 weeks as planned. It is Duke's belief that the tumor spot was small enough not to touch. After a day of prayers and discussing options with MD Salacz, we decided to play the waiting game with the understanding if Will began to feel any worse we would get an immediate MRI and proceed from there.

Time does truly fly when you are having fun as Will is up for his next scheduled MRI this Thursday the 22cd! We will meet with MD Salacz after and review the results. If this is something you can lift up to the Lord we would be grateful!

Will has been doing well with his chemo. He now receives treatments on Tuesdays and ends up feeling pretty crummy all of Tuesday and then Wednesday feels mostly back to normal which is a huge praise. He is holding strong at 150lbs and not loosing so we are thankful! He has started to have just 2-3 minutes in the day where he feels nauseous and has to sit down. This is not a huge imposition in the day but just another side effect to pray that the Lord will relieve him of.


In the meantime we have taken a trip to Colorado to see Willis's new precious niece. She is so sweet and it was a great time to just relax and to be in a place that was actually WARMER than KC. Shocking:) There was just enough snow on the ground in the yard that Will and Ruth could take the snowmobiles out and take the kids on a bit of a ride. The kids seemed more comfortable driving with Will than they did with Ruth even though he was driving with one arm! Those of you who have driven with Ruth you can figure out why:) With the good weather we drove a couple of hours to the hot springs and enjoyed a day there. Will rented a 'banana boat' for his nephews and they had a ball. After a couple of games of baseball we headed to an Italian restaurant to celebrate Valentines Day since Ruth had to work on the 14th. It was just a sweet time being with Family and playing lots of Monopoly!

Thanks for your prayers and for lifting us up these past few weeks and this coming Thursday.