Kenny Update--October 24th

Kenny is doing very well after his surgery. He is in a regular room and we will probably be heading home tomorrow. He says he has no pain and is not on any pain meds. They also put tubes in his ears and his hearing is back to normal. We were actually able to talk in a normal voice at the foot of his bed and he was able to understand what we were saying. He is a little

pale, somewhat sleepy and has been able to follow conversations well.

The surgery was not as long as planned. The growth was not as large as was expected but it did test positive for cancer. They did not have to be as invasive into his brain as they were last time. The surgeons said that the skull and areas around the tumor look good but they are a little perplexed by the section of the tumor that did grow. I think everyone is interested in the biopsy results to determine what, how and why.

He has drank ½ of a boost, has played on his iPad for a few minutes and is taking a nap right now. He is looking forward to going home.

 

~Ken and Jo~

Kenny Update--October 23rd

We are safe and sound in our hotel room after an early dinner and are starting to unwind. We had several interesting events after we arrived at the hotel but all is good.

First we have Jess’ car for the last several weeks as she was having some starting issues in Philadelphia before her return trip to Pensacola. We have run this car every way we could have imagined bu

t there have been zero issues until now. One of those “God things” that we drove straight from home to the hotel with no stops which is very unusual for us. Once we were given our room we got back into the car to park closer to our room and the car was doing the same thing that Jess had told us about – It would not start. So we decided to let it sit for 30 minutes as she had done to get it to restart, took our luggage and walked over to our room.

They are doing some maintenance on some of the rooms and the room we were given was for lack of a better word “disassembled”. There was a chair that was available so we parked Kenny as I walked back to the office to get another room. The clerk was very apologetic and gave me another room key. Before I move Kenny and Jo I checked the room and <Shocked expression here> it was also disassembled. Back to the office I went. Really I was starting to laugh at this point. I had great compassion on the clerk as he looked back up to see me walking back in. So before he handed me key #3 he wanted to let me know that he was going to check on the room before handing me the key. He was apologizing the entire time. So a couple of minutes passed and as he was walking back to the counter after checking on #3, I could tell that he looked a little worried. I guess room #3 had not had the maid thru it yet. Room #4 was the winner!

By this time 30 minutes had passed and the car would still not start. Luckily there is a Wendy’s (Kenny’s usual choice) next to the property so we were able to walk over for dinner. After dinner and an additional 58 minutes of letting the car sit – SUCCESS! The car started. *** Mike Fields alert – you have a car coming over to you for repair in a couple of days ***. I took the car over, filled the tank while it was still running got back over to the hotel. I was able to restart the car without any problem so yes this is still an intermittent issue.

I personally think that Jess’ car is attached to me and knows that she is coming back next weekend to swap cars. Just goes to show everyone that God does have a sense of humor. We are going to be calling it a very early night tonight. We will be at the hospital very early but Kenny will not be in surgery until mid-morning. I will post once he goes to recovery and we are able to see him. This is going to be a very long surgical procedure.

 

~Ken and Jo~

Kenny Update--October 22nd

Tomorrow we will be traveling back to Ohio State University and the James Cancer Hospital for a scheduled biopsy on Wednesday. There are several last minute items that we are finishing up before we begin the next chapter in this journey.

Praises
Kenny has an excellent group of doctors and nurses in Indiana and Ohio that have been diligent in his treatment. There are no

boundaries that they will not cross to make sure that he is getting the best care possible and have every advantage in his cancer battle.

Prayer concerns
First and foremost is protection during the surgery.
That the pain and discomfort is at a minimum
The biopsy will show the correct diagnosis of the cancer.

 

~Ken and Jo~

Kenny Update--October 21st

Kenny felt good enough this morning that we were able to attend Indian Creek for service.

~Ken and Jo~

Kenny Update--October 19th

Today we are taking trip to OSU today for CT scan, blood work and pre-op meeting. Kenny's biopsy is scheduled for Wednesday morning!

~Ken and Jo~

Kenny Update--October 16th

This is not the update that we wanted to give. Jo had taken Kenny to the Oncologist office this morning for him to receive a transfusion since his blood counts were rebounding so slowly. The MRI results are in and the tumor is mostly unchanged except for one section. Riley Children’s Hospital, IU Bloomington Proton Center and OSU have met on the results and we have a couple of options before us. The short answer is that Kenny will be scheduled for an additional biopsy at OSU so that the doctors can determine the composition of the growth area. Right now it is too early to determine the future direction of Kenny’s cancer treatment but there is additional chemo’s available. We will be back to a hurry up and wait mode over the next few weeks with surgery and test results.

Praises
Most of the tumor remained the same size

We have additional chemo options available for future treatment

Prayer concerns
The biopsy will lead to definite answers
An effective chemo treatment will be determined

Thank you everyone for your continued prayers!

 

~Ken and Jo~

Kenny Update--October 8th

We have few concrete answers to give right now so I am going to list the major items.

Cancer
There is no evidence to point to an improvement or worsening of Kenny’s condition. Kenny did show clinical improvement several months ago with the previous chemo treatment that he was on. This was prior to the tumor debulking procedure and proton therapy; however that also

showed a growth in tumor size. Due to the rare type Kenny has and the lack of enough statistical data on treatment effectiveness, the Oncologist and the group that has been meeting is recommending that Kenny continue the current chemo treatment for a few additional rounds. That is IF the tumor has not grown in size. The only effective way of telling if this cancer has been successfully treated is to discontinue treatment and watch him over a long period of time.

Tumor
The oncologist office is waiting for the official tumor measurement from 3 separate MRI’s. Pre-Proton treatment, Post-Proton treatment and today’s scan. Because the tumor is at the base of the skull, doing comparisons on 3 separate scans and there is so much in that area that needs to be examined; there was no initial preview given. Once the Oncologist and his team have had a chance to review the results they will be meeting with Jo and me.

Hearing
There is a build-up of fluid behind his ear drums and no sign of additional damage to his auditory nerve other than was already present. The doctors put him on a prescription to see if this will clear it up. The long term solution will be to have tubes put in his ears if the prescription does not do the trick. The ears are neither infected nor painful, he just cannot hear much.

Blood counts
Mostly were good. His protein counts are solid so his continued diet of boost drinks has not only stabilized his weight but has brought these counts back in the safe range for several weeks. His white cell counts are on the rise from last week. We will need to keep him away from crowds for a while longer. His red cell count is lower than they would like. He may need to do another transfusion soon if these numbers do not improve quickly.

Chemo
The latest round finished last Friday. Due to lower blood cell counts than they want at this point in the calendar Kenny will also be taking next week off of treatment.

Praises
The hearing loss is easily treatable
Kenny continues to be medically stable

Prayer concerns
The future cancer treatment is the correct path to take
Accurate tumor measurement
Patience and continued stamina for the family

Thank you one and all for your continued prayers!

 

~Ken and Jo~

Kenny Update--October 7th

Kenny has several medical tests that are scheduled at the hospital tomorrow. MRI, hearing test and blood work are the major ones so it is going to be a full day. We are praying for accurate test results so the future direction of treatment can be determined.

~Ken and Jo~

Kenny Update--September 16th

21 more days or one additional round of chemo to go. Tomorrow starts an off week and 7 days of recovery before the last scheduled 2 week round of chemo begins. This week has been in a word – nauseous. Kenny has been keeping 4 out of 5 boost drinks down but there has been one, somewhere in the day that has just not agreed with him. His weight has been stable so it has n

ot been an issue this time around.

Kenny started showing significant hearing loss in his left ear. One of the things that will need to be checked out once he has had some down time. We are patiently waiting for the MRI to be scheduled so we can see what the ‘official’ tumor size is and get an idea of where he is with the treatment that has been given.

Kenny and I were able to attend service today at Indian Creek for the first time in 5 weeks.

Praises
Weight is stable.
We are in countdown mode to finishing treatment.
Kenny has been keeping up with school so far this year.

Prayer concerns
All of the cancer cells die.
Hearing loss is not significant and does not start in the other ear.
Rest can soon cover the entire household.

Thank you everyone for your prayers

 

~Ken and Jo~

Kenny Update--September 3rd

The fever has been gone for nearly one full week and his weight has been stabilized. Kenny is feeling better than he has for some time but I suspect that it is due to being off of chemo for 3 straight weeks. Tomorrow chemo restarts.

Prayer concerns
Kenny can complete the final 2 chemo cycles without interruption
Weight
The remaining cancer cells (if any) will just plain die

Praises
His weight is stable

Thank you one and all for your prayers! 

~Ken and Jo~

Kenny Update--July 29th

There is so much to update you with Kenny and his current cancer battle. The Proton Therapy ended on Wednesday after 39 treatments. The type of radiation that he received is still active and will be for a while longer. Sunburns started to appear on his neck Friday and while uncomfortable are being treated. The chemo doctor wanted to have an MRI performed Thursday to h

elp him determine what direction to continue with chemo treatment. I was initially opposed to having the MRI since most of the medical advice we were given said that it would be 4 - 6 weeks after Proton treatment before a good baseline could be done. The largest concern was that the tumor could appear larger if the tumor was dying off or if the Proton Therapy did not work. The other possibility was that the tumor would be the same size and it would be difficult to determine why. So we agreed to have the MRI performed with the full intent of ignoring whatever results were given to us.

Much to our surprise and relief the tumor has shrunk from the original post operation de-bulking procedure. Yes shrunk. This is an answer to many prayers and petitions lifted up on our behalf. This is the first measurable medical evidence that any of the treatments he has received has stopped the cancers progression. While we are quietly celebrating the news and waiting for the next scheduled MRI there is also some unfortunate news to add. While the tumor has shrunk there is also evidence that there has been some damage to the brain near the area of the tumor. The tumor de-bulking operation that Kenny had in May was to give some space between the brain and the tumor. This would allow for a lighter Proton dose and give some additional space to minimize the beams from hitting the brain at full power. The brain damage will not be visible immediately and we are not going to know the extent for several months to come. This was a known risk that was discussed with all of us before we started any of the treatments.

So the current plan is Kenny will re-start chemo tomorrow for an additional 3-3week session. We will have another MRI in about 6 weeks and we will continue to pray.

Praises
Gods answer to prayers.
A smaller tumor.
Some calm from this storm in our lives.

Prayer concerns
That the brain damage will be very light and we provide Kenny with the proper post procedure treatments.
The remaining cancer cells are killed by the chemo.

Thank you one and all for the difference you have made in our lives. This storm in our lives has been made more bearable by your prayers and encouragement. 

~Ken and Jo~ 

Kenny Update--July 25

Kenny's last day at Proton Therapy!

~Ken and Jo~ 

Kenny Update – July 19th

It has been a while since we have posted any updates. Attending Bible Bowl nationals last week and getting back into life’s schedule has left little free time.
We are in Bloomington at the moment at the Proton Therapy Center. The current schedule is for Kenny to complete the last of the proton treatments next Wednesday. There have been a few very minor issues that have developed over the last few weeks. Kenny’s throat has burned some from the radiation field and it has been uncomfortable for him to swallow. It has been more like a continuous score throat. He is still losing weight; not as fast as it had been thanks to Jo but still an issue that is closely being monitored. I think Kenny is starting to have nightmares of his Mom chasing after him with multiple high protein milk shakes in hand telling him to wash down his saliva with another drink. His smell and taste are non-existent so there is really nothing that he enjoys eating. Add to that his decreased appetite from chemo and it has the potential to be a perfect storm. The saving grace is Kenny’s age and willingness to eat/drink more than he really wants.

Kenny had two full weeks of chemo and is on an off week this week. The schedule is for him to continue the current chemo for 3 additional 3 week cycles.

Prayer concerns
Kenny’s weight loss.
All of the cancer cells have to be destroyed either from Proton or chemo treatments for this fight to be successful.
5 months into treatment and there is still a very long road ahead.

Praises
Proton Therapy was made available for Kenny’s case.
Kenny is finishing a science project this week – he will finish his school year before the deadline.
The medical staff that have worked so hard to get us to this point in time.
God’s provisions in a difficult storm of life.
The prayers and support that we have received. We really do not know where we would be had it not been for all of the intervention.

~Ken and Jo~

Kenny Update – July 5th

Proton Treatment #25 completed today with 15 more to go. Kenny also has received Chemo each day this week. Tomorrow after his proton treatment he will be heading to the hospital to get his monthly pneumonia preventative breathing treatment, chemo and he will have new blood labs drawn to check his levels.

All in all – it is going well. So having said all of that it appears that I will be heading to Bible Bowl Nationals this weekend with Pop, Julie and Ben.

Prayer concerns
His weight is down; however his enzyme levels are in a safe range.
Some minor issues have appeared and are being monitored.
Blood counts are good tomorrow and chemo is able to continue next week.
The patience ‘thing’ is a tough act with me. We are not going to know how effective this treatment has been for about 9 more weeks.

Praises
Kenny ate almost one whole hot dog in a bun yesterday evening and a small handful of potato chips. He repeated it again at lunch today. Funny how this is a praise.
Other than losing energy quickly – Kenny is doing extremely well.
Kenny is making good progress on his remaining school work. There is light at the end of the tunnel and it is not the train.

Thank you one and all for your continued prayers on our behalf. You have and are making a difference. 

~Ken and Jo~

Kenny Update--June 30th

Jess drove Kenny to the CCU tournament on Friday after Proton treatment and he enjoyed it. 

~Ken and Jo~

Kenny Update – June 26th

Not in any particular order - 14 hours – 450 miles – 2 states – 1 Proton Treatment – 2 doctor visits – Mc D – Wendy’s – 1 road kill squirrel – 2 gas tank fill ups = long day.
The surgical site is healing extremely well.

Both doctor visits had good reports. We need to have new MRI performed 2 weeks after proton treatment has finished and another trip to OSU in 2 months. There is a rumor that Kenny MAY see the Cincinnati Bible Bowl tournament Friday after Proton treatment.

~Ken and Jo~

Kenny Update – June 21st

Kenny is doing well. Proton treatment is continuing every weekday. We just met with the Proton doctor and based on this week’s updates the treatment is going great.

The chemo treatments were suspended this week due to low blood counts on Monday but a new blood draw this morning show the counts returning to more normal levels. The concern is if the counts get too low that Kenny could be hospitalized with a fever, infection or could affect the treatment effectiveness. This is a balancing act that the doctors have to perform between the 2 treatments and is not totally unexpected. Proton therapy is the priority of all of Kenny’s cancer treatment and everything else is secondary.

Next Tuesday is going to be an extremely busy day for us. Kenny will be getting Proton treatment very early in the morning and then we are heading to OSU in Columbus, OH for 2 afternoon appointments. We will be returning home that evening. If all goes well I should still be heading to the CCU tournament in Cincinnati on Wednesday. The interstate between home and parts of Ohio are starting to become very familiar.

Prayer request
Continued protection from the cancer treatment but an effective battle to destroy the cancer cells
Time management and balance of activities
Kenny gets his school work completed

Praises
Continued provisions that we are constantly seeing
How well Kenny’s continues to do

 

~Ken and Jo~

Kenny Update – June 14th

Kenny is getting his chemo right as I am typing this and has 13 Proton treatments completed as of this morning. They have re-dosed his anti-nausea meds and moved the time he takes them. He has been keeping food down all this week without issue. He looks and feels much better than when I left for Cincinnati. He has had chemo at the Dr office earlier this week and is back to getting chemo at home starting today. Today was doctor-patient-parent weekly reviews at the Proton Center. There has been ZERO tumor growth or swelling since the start of treatment. He still has some double vision that has returned but no headaches or any signs of negative side effects. 

Thank you for your continued prayers! 

~Ken and Jo~

Kenny Update--June 10th

Kenny had an off chemo week last week and has had severe nausea. His meds have been changed at the end of the week and it has improved his ability to keep food down this weekend. Due to the problems that he has over the last week he will be having Chemo as outpatient for the first few days for this next cycle so he can be monitored. His weight is down and Jo has high protein milkshakes following him around. So the schedule for him is proton treatments continue M- F and Chemo restarts tomorrow for an M – F for 2 weeks on / 1 week off.

~Ken and Jo~

Kenny Update--June 3rd

Kenny has completed two weeks of chemo and 3 days of proton treatments as of Friday. This week he will have one week off chemo treatments to let him recover but proton will continue. He had a lot of nausea and has been very tired the last few days. He has lost some weight this week so Jo is back pushing milkshakes under his nose as often as possible. It has been a rough 4 days for him but all in all he is doing great and is still smiling even if it is forced sometimes.

We meet with the proton doctor Thursday and he said that Kenny was a model patient with the treatments. In discussing some of his returning symptoms we were told that it will be weeks or months before they will know if the proton treatment worked. The tumor may swell as it dies off or it could grow if the treatment is not successful. The only way that it can be determined is if they surgically open him up to see. What we walked away with is there is probably going to be an increase in the original symptoms over the next few weeks.

Bible Bowl tournaments are starting this week so it may be a while before I am able to post updates. I hope to see a few of you at KCU and Beginner Nationals over the next week.

Prayer concerns
Kenny is able to recover from the chemo this week
Protection from the side effects of proton treatment and chemo
Patience – not one of my strong suites
4 Bible Bowl tournaments in 6 weeks

Praises
We are finally in Proton therapy
The technology that is available this day and age to combat cancer

Thank you for your continued prayers!

 

~Ken and Jo~

Kenny Update--May 28th

There is so much to update on Kenny and it has been difficult to find the time to get something out. The schedules, work and other items of life has kept us on the move.

Kenny has had one full week plus a day of chemo treatment under his belt. It was a struggle with the insurance company to get the authorization processed and approved. I cannot calculate the amount of HOURS that were put in by us, the hospital and doctor’s office to get this approved. Finally that was fixed a few hours into the start of his chemo. The doctor’s office was able to get clearance to have home health care to perform the chemo from our house starting today instead of having to have the treatment from the office/hospital. This is going to save about an hour a day traveling.

Proton treatment will begin this week for a 7 – 8 week run. A ‘dress rehearsal’ will be done tomorrow and full treatment will start on Wednesday. The last 6 weeks of hospitalization, surgery and treatments have been working run up to Proton starting. We are excited that the date is finally here.

Kenny is doing well. He has had a couple of headaches the last 2 weeks that we thought might be side effects of the chemo but yesterday he had a period of double vision during church service. Since the tumor grew with the hardest hitting chemo they could give him and he was off of chemo for 5 weeks before and after the surgery this is not really surprising.

Prayer concerns
Proton/chemo treatments will kill the cancer.
Kenny is protected from the harmful side effects of the treatment.
Kenny can complete his sophomore year of school before the August deadline.

Praises
We are able to successfully keep up with everyone’s schedules.
Jess not being able to find a summer job has been a huge blessing in helping out with the younger kids.
Being able to have home health care perform the chemo treatments from our house.
We have a Proton center so close to home. There are only 4 in the US that handles pediatric patients

Thank you one and all for your continued prayers! 

 

~Ken and Jo~

Kenny Update--May 21st

Today is the first day of Kenny's new chemo treatment!

~Ken and Jo~

Kenny Update--May 15th evening

We are home. Kenny had another great check-up and nothing to report. We had an interesting trip home with sections of the interstates (670 AND 70) closed in Columbus for construction and no detour signs posted. Future note to self - take a paper map. The GPS may recaculate but has no idea how to get you over to a different interstate to get out of town.

~Ken and Jo~

Kenny Update--May 15th

Thank God for 2 health insurance plans with Kenny. We just received one of the EOB's from The James Cancer Hospital. I thought Jo was pulling my chain when she told me $119,000 plus change. This is a prime example of when you need insurance - you REALLY need insurance. We are heading over there now for Kenny's check-up.

~Ken and Jo~

Kenny Update--May 13th

Sorry for a very late update. Between the doctor appointments and trying to get some work done at the office it has been a little hectic the last few days. All of the doctor appointments last week were very good. There were a couple of appointments that we did have some new twist added that we were not expecting.

Kenny is healing and doing very well. The forms and mask have been made for the Proton treatments. He should be starting those in a couple of weeks after they complete their setups. This is going slower than we had expected but we have been assured is the normal pace. Meeting with the Oncologist of Friday he is advising that we need to start a new chemo cocktail in conjunction with the Proton treatments. The chemo will be different than he had been receiving. He will not have to be hospitalized as he receives it BUT it will need to be in-patient and will be spread over a longer time span with careful monitoring. Chemo will be a Monday – Friday for 2 weeks followed by 1 week off for 3-3 week cycles. Proton treatment will be Monday – Friday for 7 to 8 weeks straight. Chemo will be in Carmel and Proton will be in Bloomington.

We had been looking at Kenny and me moving to Bloomington for a couple of months but with this new wrinkle we have tossed that idea aside. So we are going to be doing a commutes between the 2 facilities. Both doctors expressed their concern about the drive we will be doing but in the end it really does not matter. We will work with any schedule for his treatment. Besides, if we can do an Indy to Pensacola trip in a day this will be a piece of cake. It may not be what we had planned in our own heads on how this would work but it doesn’t matter. Maybe 3 hours in the car with 4 hours of treatments/check-in time.

More than once last week we have heard the general statement that Kenny’s case is unique and rare. The scheduled treatments do not have enough statistical data behind it to have standard protocols in place. We had 2 appointments where there were a long list of side effects and inherent risk that we will be facing. New waivers were written up and signed. What it boils down to is while they are doing everything they can to beat the cancer there are more risk than normal treatment would have and a lot of unknowns.

Tuesday we are heading back to OSU for a checkup so this is going to be the last quiet week we are going to have until sometime in August. This will probably be the last follow-up we are going to be able to do at OSU until after this Proton/Chemo tag team match has finished up.

Prayer concerns
Treatment side effects do not appear. It was sobering to hear them but there are no alternatives.
Kenny’s white cell count stays high enough during chemo treatments that he does not have to be hospitalized. There are plans being put in place for an ambulance ride between facilities with an accompanying nurse aboard from the hospital should this happen. I’m not sure if there is enough Dramamine on the shelf that I can get in my system for this option.
Stamina for Kenny and the family over the next several weeks.
Jo is working on schedules to get everyone where they need to be this summer.

Praises
The report that we received is that there is signs some of the center tumor mass DID show signs of starting to die off even as it had increased in size.
Jo is so good at being the organized one in the house.
Kenny is still Kenny. All smiles and no complaints.

~Ken and Jo~

Kenny Update--May 9th

MRI was completed today. Kenny says he is able to breath a lot easier now that the stints are out. Day 2 of appointments are over with and 2 more days to go.

~Ken and Jo~

Kenny Update--May 8th

We are home. Kenny had a very good check up at The James Cancer Hospital - OSU. The stints and a couple of stitches were successfully removed. It was uncomfortable but Kenny did well during the procedure. The nurse remarked how pleasant he was to deal with and most patients are, uh “Grumpy” when they are in for their follow-up appointment. The surgical site is healing well and Kenny now has to use a special water bottle to clean the site. He has his next follow up visit next Tuesday. The appointment did not take as long as we had expected and we are home earlier than we thought.
One down, three more to go. 

~Ken and Jo~

Kenny Update--May 7th

Outside of one dose of Tylenol late in the week for a small headache, Kenny has had no pain meds since the night of the surgery last Monday. The drainage has slowed down and he is sleeping well in my chair. There is a rumor that he might try sleeping in his own bed in the next couple of nights. He is doing great. The doctors had released him for any normal activities that he felt like doing. So Saturday he went to the last Greenwood Round Robin Bible Bowl meet for the season and was able to stay for the entire day. Sunday he did a couple of school video’s, followed by church service, then back home for lunch and more school then back to church to watch Jamie play the Beginner Bowl finals to wrap up his weekend.

This is going to be an especially busy week for all of us. Tomorrow we head back to OSU - Columbus, OH for a check-up and to have his stints removed. That will just be a day trip. Wednesday we are at IU-Riley Children’s Hospital Indianapolis for an updated MRI, Thursday we are at the Proton Center in Bloomington, IN for a meeting and I just found out that we are in the Oncologist office Friday morning at IU-Riley Children’s Hospital North in Carmel, IN for a meeting to discuss additional chemo treatments.

Prayer request
A busy week of doctor appointments. 4 appointments/4 days/4 cities/2 states and a partridge in a pear tree.
Tomorrow especially – Kenny really does not like it when they have the instruments up in his nose. Just that it is quick and not too uncomfortable.
School. Obviously he is behind with all of the illness that he has had. He is chipping away at it but the prayer is that he can be completely caught up before the August deadline.
The Oncologist is waiting for a pathology report from the OSU surgery. Praying that there are no surprises.
Strength and stamina for Jo and I.

Thank you one and all! 

~Ken and Jo~

Kenny Update--May 3rd

Unbelievable! There have been a couple of times this week that we have wondered if we are asleep and dreaming all of this stuff up. God has been so…God! Gods purpose for Gods reason on Gods timetable. He has been amazing, surprising and sometimes we have found ourselves laughing at God’s sense of humor in so many areas. There have been needs met before there was an acknowledgement from our part that we had a need. Schedules, timing, even what most would see as minor coincidences that have occurred the last few weeks all points to a caring loving God caring for people in the middle of their storm.

Yes we are home from The Ohio State University Hospital and The James Cancer Hospital. They have a fabulous group of individuals that took care of our needs from admission to discharge. The best way to describe them is a servant’s heart in everything they did. This is one of three hospitals that we have witnessed this treatment of patients and parents. Peyton Manning Children’s Hospital – Indianapolis IN, IU – Riley Children’s Hospital, Carmel IN and OSU in Columbus OH. The downside is that – yeah, we have been in way too many hospitals the last 10 years to start rating them. Ohio should take a bow for a wonderful jewel they have.

The Clift notes for Kenny is
90% of the tumor was removed. WAY more than was targeted for the surgery.
All of the compression that was against his brain has been removed.
There was no trauma to the optic nerve or brain stem.
The optic nerve HAD been bowed due to the tumor and is now “relaxed” for a lack of a better word.
The brain is once again free floating in its membrane. I cannot remember the proper term.
Kenny was off of all monitors and IV early Tuesday evening. He has had no pain meds since Monday evening.
Everything and I do mean EVERYYHING went better than could have been hoped for.
Kenny was released from the hospital early because he was doing so well that there was no reason for him to stay.

Next week he will be back at OSU on Tuesday to have the stints removed from his nose and to check the surgical site. The stints were placed there to protect his nasal passages as they were moving instruments in and out. Wednesday he is to have an MRI in Indianapolis to get a final measurement and dimensions of the tumor. Thursday he is to be in Bloomington, IN at the Proton Center to start the prep work for his mask and set up a schedule to start that therapy. For those that have not been thru any radiation they will create a mask for his face. Then it with him inside will be bolted to a table so there is no movement as the Proton beam is delivered.

We are happy to be home but thrilled that so many prayers have been answered. More than we had asked for. We have seen Gods hand in so many ways. From how quickly the tumor was found in February to the amazing surgical/recovery this week. In the midst of the storm it is difficult sometimes to find what is going well. The news is not always what we want to hear, the test results are not what we expect them to be and the storm that hits us usually when we least expect it. We have had what feels like several kicks to the stomach the last 10 years that just takes your breath away. God IS always there in the trial – He will not and has not left. In a million years from now this will be just a memory of a challenge we had faced. While it is difficult today – there is always a reason. We just may not know this side of heaven.

For all of our family that is reading this; that is each of you who have prayed on Kenny’s and our behalf. You will never know the full extent of our gratitude. It has been prayers that have carried us in our darkest moments where we have faced the world and ourselves in the mirror each and every day. We have questioned the disease, we have questioned the prognosis but we have not questioned where God was.

Prayer concerns
A restful period for all of us before next week’s appointments begin.
Kenny continues his amazing recovery.

Praises
Kenny is still all smiles and is his normal cheerful self.
They are everywhere in this note.

~Ken and Jo~

Kenny update--May 2nd

Yep - no kidding. Kenny has his discharge papers. We are going to be heading home in a few minutes. 

Here is a picture of his just two days after brain surgery! God is good! 

 ~Ken and Jo~

Kenny Update--May 1 st

Kenny is doing great today. He slept as well as you can for being in the hospital last night and has taken a couple of long naps today. He has a small headache in the back of his head but is off of all pain medication today – he is his mother’s son. There is normal drainage of the surgical site with no sign of spinal fluid leakage. He ate a little bit this morning and ate better this afternoon. He sat in a chair for 2 ½ hours before the MRI and will be walking this evening.

An MRI was performed this morning but we have not had the official reading. The surgical team just finished cycling thru and they are VERY pleased with all of the results and his recovery. He is going to be moved from step down ICU to a regular room later today and they are now discussing when he can be released from the hospital. It’s beginning to look like we will be home in the next couple of days. Thank you everyone for your prayers and our miracle. 19 days ago the news was bleak and today it surpasses our wildest dreams. 

~Ken and Jo~

Kenny Update--April 30th Evening

We have been in to see Kenny and Jo is with him now. We are waiting for him to be transferred to his room. He will be in a step down ICU instead of full ICU over at the James Cancer Center at OSU. He obviously has one big headache and they have him on a good pain management medication. He is in great spirits as always and has been dosing off and on. He woke up well in recovery and when the nurses asked his pain level on a scale of 1 to 10 he rated it a 3 with all of the pressure that had been relieved. The nurse was uncomfortable with him coming out of surgery and him not having any pain meds so she administered a dose anyway. As that was wearing off he DID ask for his next dose. I think he has had more of a headache then he has realized for several weeks but was used to it. He has some bruising around his left eye. His pupils are almost the exact same size so they were able to relieve the constriction around the artery that feeds the optic nerve. His vitals are good but he is very pale. Blood labs are going to be run in an hour to check his hemoglobin levels.

It has been a whirlwind few weeks for the family. Jo and I are breathing a lot easier than we have. There is still a long difficult road ahead for Kenny and we covet your continued prayers. One large battle has been won today but the war continues. 

~Ken and Jo~

Kenny Update--April 30th

Kenny is doing great and the surgery is done. We just spoke with the surgeons and in their words “…the surgery went better than we were expecting”. The tumor was 3.3cm X 5.0cm X6.5cm and they were able to remove 90% of it. They have relieved a lot of the pressure that was pushing against his brain. He will be in recovery for a couple of hours before we will be able to see him. I told the surgeons that there have been hundreds of people who have been praying for them and they had smiles on their faces. One told me that they are always happy to take all of the prayers they can get. THANK YOU ONE AND ALL!! 

~ Ken and Jo~

Kenny Update--April 30th

It's a little after 7: 30, Kenny just went into the OR. He was doing great. The surgery will be 6 - 10 hours long. We will post late this afternoon or early evening. Jo and I are doing fine. XO

~Ken and Jo~

Kenny Morning Update--April 30th

It's about 5 in the morning and we are at the hospital waiting to check Kenny in!

~Ken and  Jo~

Kenny Update--April 29th

We are here safe and sound in Columbus. Dinner is finished, we have added all of the addresses in the GPS and we made a dry run to the hospital since I’m not sure how open my eyes will be around 4:30AM. Kenny chose Wendy’s for dinner tonight and enjoyed the last good meal he is going to have for a while. All is calm and he is starting his surgical prep work then off to bed early. We really enjoyed getting to go to service at The Creek this morning. Thanks Shan, Seth, Stan, and Lisa for this morning. Thank you everyone for your prayers! 

~Ken and Jo~

Kenny Update--April 28th

The errands are finished. The car tires have been checked and the tank filled. Big Red has been repacked for the 3 of us for an extended stay. Tomorrow we are heading over to Columbus, Ohio to our new home away from home for the week.

We are to be at the hospital at 5AM Monday morning; surgery is scheduled to start at 7. The procedure will be 6+ hours.

Prayer concerns
All medical staff has a laser focus on their task in dealing with Kenny.
The surgeons have steady hands and listens as God whispers in their ears.
Protection of Kenny’s brain

Praises:
The State of Ohio’s Motto – “With God All Things Are Possible”. http://www.ohiohistorycentral.org/entry.php?rec=1885
So many doors have been opened, schedules have been cleared for Kenny. It has been humbling to watch.
Everyone who has been praying on our behalf. We cannot thank you enough.

~Ken and Jo~

Kenny Update--April 25th

We are finally home with Kenny!!!

~Ken and Jo~

Kenny Update--April 24th

Nothing is impossible with God. We said that this is our verse that we would be using for this cancer go around. I also posted Sunday “Thank you one and all for all of the prayers and the difference you are making in our lives. There have been needs met even before we realized there was a need.” and WOW is that true.

So part of what we are doing in Columbus, OH was to meet with the surgical group for a consultation. I thought it was a pediatric neurosurgical group but was not. It was with an ENT group at Ohio State University that specializes in base of the skull surgery. It went very well. They are willing to do the de-bulking procedure to reduce the size of the tumor. The focus will be to remove some of the tumor around the brain stem and the optical nerves to create some buffer areas before he begins proton therapy. There are several risk involved with the surgery but there are greater risk during proton therapy without the surgery.

We meet with 4 doctors and supporting staff as they performed exams and started to walk us thru the MRI images and their plan for the surgery. As the lead surgeon was finishing up with us on our questions, one the other surgeon’s received a page and excused himself from the meeting. A few minutes later after we had finished and discussed with Kenny on the options - we decided to go ahead with the surgery. We were told that it was going to be a couple of weeks before it could be scheduled and they were going to look at available appointments that we could book. We were told that this will not be scheduled as an emergency surgery BUT he wanted to do this as soon as possible since the tumor has grown during the chemo treatment. As we told the doctor, we will work with any schedule that you have. This is a priority for us and we will make any necessary adjustments to meet their schedules. They left the room and all returned a couple of minutes later telling us that the page they had received a few minutes ago was for a cancellation this Monday – would we be willing to take that slot? Uhhhhhh…..OF COURSE WE WILL!

So we are still in Columbus, Ohio. We have 3 additional appointments starting at 7:30 tomorrow morning to prepare for Monday. WOW!

Praises
Both Jo and I had an urge to pack an overnight bag for a just in case Kenny became ill before we could get home tonight. Both of us figured the other would say that was overkill and try to nix the idea. When we discussed it this morning we both laughed that we were thinking the same thing and yes it probably was overkill but we would feel better and put the bag away when we got home. Surprise!

A cancellation came at just the right place and time!?!?!
They were able to get us in hotel room at a really reduced rate since so we would not have to do a round trip back from Indianapolis early in the morning!

We had a gift card from Bob Evans that we had not used yet and we were going to stop at one on the way home for dinner. Guess what restaurant is next door to the hotel we were booked at? Go ahead – I’ll wait. Bob Evans you say? YEP! Thank you Dan! Did you have any idea that God was using you in a greater plan?

Prayer concerns
Risk during the surgery – Stroke, blindness, permanent double vision, ect, ect, ect. Not to make light of any of this but without the surgery and the proton therapy the risk are death, blindness, ect, ect, ect.

The family – this is going to be a stretch for all of us. Gods timing is going to warp speed right now and we are tightening our grip for a wild ride ahead of us.

Kenny

Thank you one and all for your prayers – you HAVE AND ARE making a difference in our lives.

~Ken and Jo~

Kenny Update--April 22nd

Kenny has had a great week and was able to stay away from the hospital. Kenny was actually able to have a normal week. Not a single doctor’s visit. He attended Bible Bowl practice on Thursday and was able to attend church this morning.

He was registered at Proton Center in Bloomington, IN last Thursday and we received a call from the Ohio State pediatric neurosurgery group that they would like to have a consultation this Tuesday afternoon. So we are planning a day trip to Columbus, OH and back. This Thursday he is currently scheduled to reenter the hospital for another round of chemo. Not sure if that will hold but that is the plan at the moment.

We pray that each person that is dealing with Kenny’s case has laser focus on the task at hand and for the wisdom in his situation. Thank you one and all for all of the prayers and the difference you are making in our lives. There have been needs met even before we realized there was a need.
 

~Ken and Jo~

Kenny Update--April 16th

Today was a very busy but great day in Kenny’s cancer battle.

We spent the better part of the day at Riley Hospital downtown having a consultation with Dr. McMullen from the IU Proton Therapy Center in Bloomington, IN. Kenny is eligible for Proton Therapy and we were greatly encouraged by the meeting today. There may be a surgery to de-bulk (remove some of) the tumor and create a space cavity to protect the brain stem and some areas where the optical nerve runs thru. The additional goal would be to focus the radiation to a smaller base tumor. A specialized pediatric surgical group for base of the skull tumors that Dr. McMullen has previously sent patients to will be consulted with over the next few days at Ohio State University. Even if the surgery is not an option Kenny is still eligible for the Proton treatment however the surgery would decrease some high risk factors. There will still be chemo treatments that will need to continue at various stages of this process. There are a lot of items that need to happen over the next few short weeks.

We have been told that Kenny’s tumor and cancer is rare for his age. To put it in perspective this will affect about 50 kids in the US this year whereas there will be about 617 people who will be struck by lightning in the US. Truly there are days when being unique has its drawbacks. The statistical odds for treating the cancer successfully are still the same. Not great but he has a fighting chance and this is one additional treatment option that was not there last week. Fortunately the facility is located just a little over an hour from where we live. The next closest facility is in Pennsylvania.

Kenny has not had a fever as he usually does at this point in time and has been able to stay out of the hospital over the weekend! We know that he had a lighter chemo this last treatment but we are thankful that we have been able to skip one hospitalization this 3 week session. Blood labs were drawn late today and we are expecting that his white cell count to be in a safe range from infection.

Prayer concerns are
Surgical Team at Ohio State University is able to de-bulk the tumor. And I’ll ask for it now - with no side effects.
The “process” of the treatment continues to have God’s timing and we have patience.
As much sleep and rest as possible over the next couple of weeks. I can already see a VERY hectic 3-4 week stretch in the very near future before he will begin proton treatment.

We are thankful for
This additional avenue has been opened up for Kenny.
Those children and their families who have gone thru the Proton Therapy over the last 10 years. Having made this program more successful for us today.
Work has been flexible in my time off.
Your Prayers!

~Ken and Jo~

Kenny Update--April 14th

Kenny hung out with his sister Jacquie on Saturday night, here is a little piece from their evening.   

~Ken and Jo~

Kenny Update--April 13th

So far Kenny does not have a fever today. Usually this is the day that he goes back to the hospital with one for several days of antibiotic IVs. Big Red has been packed and setting in the closet just in case.
We received a call from Dr. Lazarus this afternoon. Kenny is a candidate for proton therapy in Bloomington, IN and Dr. Lazarus discussed with Kenny, Jo and I the meetings he had. An appointment has been arranged for Monday morning for everyone to discuss the details to see if this is an option to be pursued. Thank you for all of the prayers! 

~Ken and Jo~

Kenny Update--April 12th

Kenny, Jo and I meet with Dr. Lazarus this morning and had a long conversation on the results of yesterday's medical panel review. It was a blunt and honest conversation that we can wrap our minds around.

Kenny's tumor has grown between MRI images BUT he has clinically shown signs of improvement. I.E. - the double vision, eye movement and headaches are not an issue as they had been. The seizures have not returned since he has started medication. There is a possibility that the tumor grew before the 1st chemo session took hold and the latest MRI was performed. The MRI does not show the health of the mass, just that it is there. All agree that the 2 statements - increased tumor size but clinical improvement do not line up.

He has a stage 3 high grade tumor at the base of the skull. There are 4 options that are on the table today based on the medical board review.

1. Continue the current chemo treatments for an additional 3 - 3 week session. Followed by an MRI and re-evaluation.
2. Change the chemo treatments for a 3 - 3 week session. Followed by an MRI and re-evaluation.
3. Surgery and Radiation. The panel advised against both of these options as they believe the risk outweighs any possible benefit. There is a surgeon in Ohio that will perform very aggressive types of surgery that we can be referenced to should we choose. Normal and gamma radiation was not advised due to the tumor location and pervious radiation therapy he had. Should the tumor shrink then this option will be revisited. One additional medical panel has been scheduled to review proton radiation therapy that is being performed in another city.
4. Withdraw all further treatment and have hospice called in. This will give him an estimated 6 - 12 months at his current state.

Kenny, Jo and I sat down and discussed each of the options that are available and agreed that we will continue with the current chemo treatment for the next 9 weeks to determine if he shows any additional improvement. Again Kenny cannot do things the easy way. The doctor said that he has the rarest of rare type if tumor for his age. The statistical data is almost nonexistent but at the high end is roughly a 20 percent survival rate.

Kenny had blood labs drawn today and while is cell count is low, it is high enough that he MIGHT be able to skip a hospitalization this weekend. He did have a blood transfusion today and is looking better than he did this morning.

We are praying and waiting for what God has in store for us. Each day is a gift.

Prayer concerns are
Kenny’s cell count continue to increase rapidly from his last chemo session and we can skip a hospital stay
Wise counsel and decisions are made on Kenny’s behalf
Kenny continues to show improvement

Thank you for your prayers! This is difficult enough to go thru as a Christian and with the family of God surrounding us. How non-Christians deal with this storm of life we will never understand.
 

~Ken and Jo~

Kenny Update--April 10th

Kenny is doing well from his last chemo session. Thank God for high protein milkshakes! He had a weight GAIN prior to hospitalization and only loss 2 pounds during his stay. The last chemo session was not as heavy as the previous 2 and you can tell that he is rebounding from the side effect quicker than normal. Kenny was able to watch 2 of his video classes today. He is his normal happy go lucky self.
We are praying that the medical review board meeting tomorrow has wisdom and insight for Kenny’s case. We want to thanks each and every one of you for your partnership in prayer. 

~Ken and Jo~

Kenny Update--April 8th

Happy Easter! At home with  Kenny Henry!

Here's a short clip of Kenny! Enjoy! 

~Ken and Jo~

Kenny Updat--April 7th

Just meet with the doctor and this round of chemo will be completed today. We are looking at going home sometime tomorrow morning just in time to have Easter lunch. Even though this chemo session is not as strong Kenny has nausea but we have been able to get a couple of high protein milkshakes down him. Our prayer concern is for the medical board meeting next Wednesday and our follow-up with the doctor at the end of the week. We pray that everyone involved will make wise and correct decisions.
Happy Easter!

~Ken and Jo~

Matthew 28: 5 – 8
5 The angel said to the women, “Do not be afraid, for I know that you are looking for Jesus, who was crucified. 6 He is not here; he has risen, just as he said. Come and see the place where he lay. 7 Then go quickly and tell his disciples: ‘He has risen from the dead and is going ahead of you into Galilee. There you will see him.’ Now I have told you.” 8 So the women hurried away from the tomb, afraid yet filled with joy, and ran to tell his disciples.

Kenny Update--April 5th

We want to thank each and every one of you for the prayers that you have made for Kenny and the family. We are back in the hospital for Kenny’s next round of chemo. He had an EKG, echo cardiogram and MRI prior to heading to the doctor’s office connected to the hospital. The preliminary results were not what we had expected. While his symptoms have improved the MRI shows that the tumor has grown in size.
Additional specialists are being brought in for consultations. There is a panel meeting scheduled for next Wednesday to discuss the situation and where to go from here.
Prayer concerns are:
Wise and correct decisions are made over the next couple of weeks.
That Kenny continues to do well.

~Ken and Jo~

Kenny Update--April 5th

Today is the new MRI, Echo Cardo, Breathing baseline test and the start of round 3 of Chemo. Praying that the discussions on the next steps with the doctors over the next couple of days are productive. — with Kenny Henry at Riley Children's Hospital North.

 ~Ken and Jo~

Kenny Update--March 29th

Kenny Update - March 29
We are home! The 'new' RX's have been dropped off and will be ready for pick-up in 20 minutes. The car has been unloaded and we are looking for a long nap this afternoon. Thank you everyone! 

~Ken and Jo~

Kenny Update--March 28th

A very short update. Kenny’s cell count took a leap in the last 24 hours. Depending on tomorrow mornings blood labs there is a good chance that we will be heading home. He had a rough morning sleeping after the 1AM breathing treatment. We are praying that tonight is more restful. 

~Ken and Jo~

P.S. – Today I was asked if I was a patient. I had a really long laugh.

Kenny Update--March 27th

Kenny’s cough is better today. They started breathing treatments every 4 hours and are planning to continue them for the duration of his stay. He is back on the path of getting more calories in him. Jo and I had a conversation with the staff dietician and discovered that we can ‘special order’ almost anything. There is something called a high protein shake that he, get ready for this, LOVES. Extra calories, extra protein, extra carbs, extra cold, extra good for both the chocolate and vanilla kind. He has already put away 4 of them and I see a 5th in his future tonight. He has also eaten a part of a cheese Quesada today. His cell count needs some praying over. Platelets’ are the last to recover and took a drop since yesterday so he received a bag of them this afternoon. We joked with Kenny that we were just sticking apple sauce in him – it had the same look. His white cell count is on the rise but slowly. 300 yesterday and 400 today. At this rate we are looking at least another 3 or 4 days before we can make plans to leave.
The hospital will be adding a baseline breathing test for April 5th. He took one yesterday but with all of the issues that he has had the last few days they were not able to get a good reading. The coughing could be a rare side effect of the medication that he is currently receiving. It will be a difficult issue to diagnose if it is true.
Kenny was awake more today than he has been since this admission. We are planning to finish Men in Black tonight during dinner. He was able to get some geography finished today while I was at ‘work’. He seems to have started regain some of his strength and endurance. He/we are looking forward to spending a few days home before next Thursday rolls around. Because we have been here so much we are getting to know some of the staff and our way around the facility. Today I was mistaken for an employee of the hospital. When asked what I did here – I almost said that I was a mental patient that escaped so I could eat some cafeteria food. But I thought better of it. I hate to have security shadow me. I have found a coffee machine that I have full access to. The floor receptionist and I had a 20 minute conversation this morning on her arrival at work. I think we have had every shift nurse on the floor now – some multiple times. One of the nurses had heard of Kenny’s lack of eating and offered to make her famous homemade mac and cheese.
All in all everything is on the upswing for Kenny. As always Jo and I want to thank each and everyone of you for all of your prayers. We have had so many ask if there is anything that they can do for us and the answer has always been – PRAYER! Thank you!

~Ken and Jo~

Early Pattern Baldness...By Scissors. :)

Here are the anticipated pictures of Kenny's club members with their new doooooos. Enjoy! :)


Kenny's before and after!

Kenny's friends from Texas! This picture of the Smith men gave Kenny the biggest smile! :)

Kenny's Bible Bowl coach and friend Kennedy!

Kenny's friend Dan!

One of Kenny's favorite cousins Scott!

Kenny's friend Jim!

Kenny's Grandpa Henry

Kenny's dad Ken shaving Ben's hair

Kenny's dad Ken

Kenny's brother Ben

Kenny's brother Daniel

The Henry Men!

Kenny's sister's donated their hair to "Locks of love." This awesome organization takes hair donations and makes them into wigs for small girls who have lost their hair due to cancer! 


Kenny's sister Jess

Kenny's sister Julee

Kenny's sister Jenn

Kenny's sister Jamie

Kenny's sister Jacquie

The Henry Men wearing their new hats from our friends at Valley View Church in Texas!

We just want to take a moment to thank each and every one of you who sacrificed the warmth of your heads for Kenny. Even though most people say, "It's just hair" the fact that all of you shaved or cut your hair means so much to him.
Thank you for your acts of love!

~Ken and Jo~

Kenny Update--March 25th

We are still here in the hospital. His fever has not been high but is on the antibiotics IV drip. Blood cultures have come back negative for infections and if tomorrow’s comes back negative then we will only need to wait for the white cell count to start increasing before we can begin our escape plans. His cough has been worse and has caused him to lose some of the food we have been able to get down him. A chest x-ray came back negative for pneumonia. He has a couple of mouth sores that are being treated – a side effect of the chemo treatment. Kenny has been napping A LOT of the time which is great.
His eating has been absolutely horrible – EVERYTHING taste gross - some more than others. The hospital actually has fairly decent food here but given that his taste are way off and the newness of this food is just way too much. So we have home cooking and boost in a fridge here and that should start an uptake in his eating.
Today has been a very laid back day. We were able to listen to a sermon from Calvary Chapel Kaneohe Hawaii this morning on the start of a 40 week lesson from Matthew. We really enjoyed it since this is the book that Bible Bowl is studying. It was even better that we were able to pause the sermon for the 3 interruptions that we had this morning.
I am going to ask everyone to pray for a little one next to our room. No details but he has been extremely ill and there have been a lot of medical personal in the room the last couple of hours. I caught a glimpse of Mom and it is just the helplessness of a parent that is so difficult to deal with. There is nothing that we can do – just the Master Physician. Thank You for your prayer support of our neighbor. 

~Ken and Jo~