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~