So much to be thankful for!

So many of you have asked for updates about how Benjamin is doing.  The almost three weeks we have been home from Texas has flown by in a series of doctor appts and running around.  It is hard to believe we have been home that long already!


Benjamin is doing great.  He has taken well to the treatment and has not been getting sick from the pills and medicine.  The swelling in his head has gone down considerably and there does not seem to be as much pressure on his forehead.  While he still needs a nap most days, he is not nearly as tired as he was before starting the treatment.  He is responsive and cheerful, and seems to not have as many gaps in his memory.  He will still ask me the same questions multiple times sometimes, but he seems to understand the answers well.  He still has a short fuse when it comes to getting upset, but he is starting to realize this and acknowledges that it is something hard for him to control, which is a step in the right direction. 


We had a serious of appts at the military base near us, but they were unwilling to give him the infusion he needed and despite having a prescription, we were unable to find an infusion clinic in Ohio who could help us with the type of medication he needed.  We have visited several clinics and made dozens of calls, but in the end we decided Tuesday that we would have to fly back to Texas to get an infusion this past week.  Ben's mom agreed to keep the kids and we made plans to fly Wednesday afternoon.


Wednesday morning while I was getting ready for work, Benjamin had a seizure.  He only had one, so after getting the all clear to fly, my dad graciously met us in Texas for the infusion in case we needed a little bit of extra help.  The trip was uneventful and while we were there we met another lovely Ohio family who gave us some leads on infusion locations in Ohio for Ben's next infusion!  We got home late Thursday evening and Friday morning Ben had his first MRI since starting the treatment.  The initial scans do not show much (if any) tumor growth (we don't get official reports until next week).  This is a huge answer to prayer as it shows the treatment is working.  Between Sept and Nov the growth in size and number of tumors was significant, so no growth is major at this point!  Praise God!  I will share the radiologists notes when we receive them.


I want to thank you all for your prayers and financial support.  I wish I had time to thank each of you personally at this point, but our days are so full with appts and treatments and phone calls right now.  With the help of my parents we were able to pay for the first two months of Ben's treatment and the support of our extended family and friends has helped us raise enough to pay for next month's treatment.  Lord willing, we will be able to find a place that takes our insurance before his next infusion as each bi-weekly infusion costs about $14,000.  Benjamin does not quite comprehend the financial aspect of all of this right now, but we both have been so blessed and encouraged by your outpouring of love!


If you think of us in prayer, I ask that you would pray:
1.  That the treatment will continue to work and he will continue to improve in how well he feels.
2.  That we will be able to find a place locally to do his infusions.
3.  That he will gain back the use of his right side quickly.  Each subsequent seizure weakens the right side of his body and he has difficulty using that arm.  As time goes by without seizures, he regains the use but it takes a little longer each time.
4.  That he will remain seizure free.  His seizure threshold is low right now and he is on max dosage of both his medications, so unless they introduce another medication he is at risk for having more seizures.
5.  For our children- without going into much detail- Benjamin is blunt and speaks his mind.  The children have a partial understanding of cancer and seizures and tumors and their fear level at losing one (or both) of us is high. I have tried to alleviate this, but when we are constantly gone to appts it is hard for them to really feel we are "here."


Finally, I ask for your prayers for us this coming week.  Months ago, my parents planned to take our children to Disney for their Christmas gift from them.  Benjamin's rediagnosis and treatment made us question whether to follow through with this trip, but Benjamin feels very strongly that we should go.  He is feeling good for the most part, and has more energy than he has the past few months.  We both believe that after the past few months this is exactly what the kids need, a week of fun with their parents and grandparents.  That said, I have debated whether this trip is a good idea (and have not even told the kids where we are going and we leave tomorrow).  I am praying that we are making the right choice in going and am choosing to believe it will be a good, healing, fun week for all of us as a family!




Thank you all again for your prayers and your financial support... you can't possibly know how much it means to me!




 

Eating my words :-)

I have found that during 10+ years of marriage, that occasionally I have had to eat my words when it comes to things that I say (or have said) to Ben.  I will say that our time together has taught me a lot and I believe I might not be nearly as shallow as I once was ;-) 

Thirteen years ago, on one of our first dates, Benjamin took me to Carowinds Amusement Park.  He met me wearing a cartoon character t-shirt and a fanny pack.  

 

 

I was incredibly embarrassed to be seen with him and made sure he knew it.  I told Ben after that date that if he wanted another date, he should get rid of the fanny pack.  He lovingly obliged.

Our second week in Texas as I watched Ben stand and get yanked backward by his pump (carried in his man purse) multiple times I decided that I was going to have to eat my words and buy him a fanny pack.  It was waiting for him when we returned home from Texas... I smile every time I look at it as I think about the days when I told him I would never approve of him wearing a fanny pack.

Laugh if you want.  I do.  I have learned so much through this experience and have grown in ways that I never thought that I would.  I have asked the Lord to continue to lead and guide me, even if it is shopping for fanny packs.

I imagine that in the next decade or two of marriage, I will have to eat my words again... (maybe let Ben wear straight leg jeans and zip away pants more) ;-)  But hopefully I get a few more years before I have to eat my words about the mini van... I'm not quite there yet...

Our two weeks in Texas!!

We left home early two Fridays ago and headed for Tennessee to meet with a realtor and get our house there listed for sale.  We spent the afternoon there, and continued our drive to Houston.  We made pretty good time and decided to take the kids somewhere on Saturday to break up the trip.  Ben searched online and found a trampoline park in Little Rock, Arkansas close to where we were going to be passing through and practically begged me to stop there.  We plugged it into the gps and headed in that direction.  The lines were crazy long and the kids were wild from being in the car so long.  I really wanted to leave, but Ben was adamant he wanted to jump on the trampolines.   So we waited and before long all five of us were jumping and having a good time.  Josh begged to go on the kid trampolines so I encouraged Ben to hang out and watch with me while the kids jumped for awhile.  We had been watching them play for about 5 minutes when Ben started to say something and fell forward.  He fell into the center of the kids play area and started having a seizure.  I dropped to help him, trying not to draw the attention of the entire place while an incredibly nice mom sat down with my three kids to chat while we waited.  The seizure was longer than usual (over 15 minutes) and while I told them paramedics didn't need to be called, the manager and 2 nurses who witnessed him were adamant that they call for help when it continued for so long.  The paramedics came and chatted with me while the managers filled my kids with sugary drinks and candy and we all reached the same conclusion that it was best for us to get back in the car and continue driving.  They helped Ben to the car while I got the kids shoes on and ran them to the restroom.  Then we continued on our way. 

 When Ben woke up Sunday he was nauseous so I took the kids to breakfast in the hotel and then sat them in front of the television with his phone (in case of an emergency) while I reloaded the car and got things ready.  When checkout time rolled around he felt a little better so we set out on the last three hours to Houston.  A few quick stops for him and a lot of snacks for the kids and we made it there in record time.  His mom flew in and we picked her up to head to the apartment (overstatement) we rented for our first week.

 We spent all day Monday in appointments.  We left the kids and Amy at 9am and didn't return home until almost 5pm.  We met with doctor after doctor.  He had a physical and we met with the financial consultant to discuss the treatment and costs associated.  We scheduled an MRI for Tuesday morning to check on the progression of the tumor and with the help of my parents, made a very large deposit towards his treatment.  They told us they would call us the next day with a time for his Hickman port to be placed and that treatment would start immediately after the port was placed.

 Tuesday he had his MRI.  We were able to bring home a copy of the scan and in the afternoon we met with a nutritionist to discuss changes to his diet.  Most of the dietary recommendations we were already adhering to, but due to the large amount of sodium in Ben's new medications, he is supposed to limit his sodium intake.  We got a call saying they couldn't place his catheter til Thursday morning so we decided to take the kids to do something fun Wednesday.  After Benjamin went to bed I looked through his MRI scans and having seen enough of them to know what I was looking at I was anxious to hear what the doctor had to say about them.

 Wednesday we spent the morning at a Blue Star children's museum letting them play (low impact on Ben) and doing crafts and I ran errands in the afternoon, buying groceries and other essentials we needed.

 His appointment to get the port put in was at 730, so Thursday was an early day for us.  We drove to the clinic downtown and as soon as it was placed went back to his doctors clinic to begin treatment.  We met with the doctors again to discuss the treatment regime and what the next two weeks would look like.  The doctor told us what I had already expected, the tumor from 2 months ago was exponentially larger and there are smaller tumors throughout his brain as well.  He sounded encouraged about the treatment and said that higher grade tumors typically respond quicker to treatment.  They recommend staying on the treatment for 4-8 months following the tumor's shrinking.  We signed pages and pages of consent forms for the trail and then I learned how to attach and set up his pump.   The finance office met with me and explained the astronomical costs for the medications that he would need to be on (in addition to the antineoplastons which we don't pay for because they are a trial medication).  Insurance typically does not cover these drugs at all, and because it is a trial, they do not cover any of the doctors visits associated with the treatment either. 

 Benjamin is now attached to a pump that he will carry with him at all times.  Every four hours he will get an infusion of meds through the pump and once a day we will change the bag out. For the time being (until they are confident in my ability to do this alone) we will go into the clinic every day to switch the bags out.  He will start oral meds next week after they get this medication regulated and up to a normal dose.  For now he gets blood draws every other day to check his sodium and potassium levels.  As long as they are normal, he will continue on the antineoplastons. 

 On Friday morning, I met with finance while Ben waited for his blood draw. I discussed my options for payment and tried to figure out how to make things work.  I spent a lot of time on the phone calling our insurance company and going back and forth with the doctors office.  We are hopeful that insurance will pay for the oral meds after this initial round. Then I went into the IV room and sat with Ben while he waited to get hooked back up to the pump.  I had the opportunity to meet and talk to several other families who are going through the same thing as us.  Adults and children alike. Almost all had tried conventional treatment and within a year or two (some less) the cancer had come back with a vengeance.  All of them who had been there more than a week had stories about the positive changes that they had seen since starting the treatment.  It was incredibly encouraging to talk to people who have been in the same place.  Benjamin had been lethargic and a little out of sorts for the past few weeks so knowing that things could improve and quickly was incredibly encouraging to me.  We left the clinic around lunchtime and grabbed something to eat on the way back to the condo.  Ben’s head was hurting and he was incredibly nauseous as we walked to eat, but he made it back home with no incident.  With the exception of the time he was up for dinner, he slept most of the day sleeping after we got back to the apartment.   

Saturday and Sunday we went into the clinic early and changed out his pump bags.  By Monday, he was ready to start his full dosage of antineoplastons.  He was still getting nauseous and throwing up at least once a day, but since he had a few episodes like that prior to going on the medications, we did not think it was related.  They went ahead and put him on dexamethasone (which he was on before) to help with swelling in his brain due to the fast growing tumors.  Because of his weight and size, his antineoplaston dose is 2 bags a day.  So starting Monday, I had to start prepping two bags (this takes 15-30 min each) and after his third dose of the day, I have to switch the bags out. 

I learned to change the catheter tip out that connects to his pump (this is done every 2 days) and also how to change his bandages (this is done every three days).  On Wednesday, the 3 oral meds we special ordered arrived and he started one of them that afternoon.  He didn’t have an adverse response so we started the second medication Thursday, and the third on Friday.  On Thursday, he also had a 2 hour infusion in the clinic of Avistan.  This is a medication used with glioblastoma patients.  Each infusion costs over $10k and because of his size he receives a very large dose of this as well.  We are hoping to be able to go to the nearest military base to receive this when we get home so that we will not need to pay the complete amount out of pocket. 

The nausea passed about halfway through the week and Benjamin even went a couple of days without taking a nap.  He continued to be in good spirits when he was awake and seemed to be remembering things a little better.  The staff at the clinic joke that we are like Ken and Barbie because we are always smiling... I think they have forgotten all my tears last week in regards to payment plans :-)

Things continued to progress well so on Thursday I asked the doctors assistant what the chances were we would get released from the clinic in time to make it home to Ohio for Thanksgiving.  She discussed with the doctor and he said that if the weekend went well he didn’t see any reason why we couldn’t be home by then.  They gave us Saturday off from going into the clinic to see if we could handle doing everything necessary at home without having the nurses there to help!  All went well, and we are hoping for a good report when we meet with the doctor on Monday morning!

We ask that you continue to pray for:

1.      Ben to continue to handle all medications and treatments well.

2.      That we will be able to start getting his bi-weekly infusions at the military base near us.

3.      That his next MRI the first week of December will show significant improvement in the tumors (or complete disappearance!)!

4.      That Benjamin will continue to be in good health- our kids and his mom have fought colds and coughs this past week, but so far he and I have stayed healthy.  Pray he remains that way.

5.      That we will be able to sell our TN house & Ben’s truck and find the funds that we need to in order to be able to continue the treatment for as long as Benjamin needs.

6.      That we will be able to enjoy our time together as a family. And that Ben will continue to be in great spirits and encouraged!

We are heading back to TEXAS!!!

The last two months have both seemed to slowly tick by and fly by at the same time.  As many of you know, Benjamin had a series of seizures a little over a month ago that resulted in a week long stay in the hospital while the doctors balanced and increased his meds to stop future seizures.  The result of this was that he came home on a pretty high dose of two anti-seizure drugs and very little memory of his week in the hospital. During the days following his release from the hospital, Benjamin was still in a fog.  As time went on, he regained memories of the days before the seizures started and also of the days since he returned home.  The memories from his days in the hospital aren't there, but that is probably for the best.  ;-)

Now that Benjamin has regained his memory and some of his focus, we have been trying to determine what steps we should take next in this process.  We have met with the neurologist who is following his care twice, and both visits have resulted in them increasing the seizure meds in order to get him closer to a therapeutic dose.  While there have been no more seizures since the hospital stay, the doctor wants to be cautious.

A couple of months ago, Benjamin learned about a conference called The Truth About Cancer that would be taking place in October in Grapevine, TX.  He made plans to attend it alone to gain the knowledge that he knew would be provided by the doctors there.  At the time, we didn't want to ask anyone to keep the kids so that I could attend with him.  However, after our trip to NY, we felt that it was important for someone to attend with him.  His mom and sister both offered to keep the kids, so we made plans for me to attend with him.

The conference two weekends ago was very encouraging.  We literally heard hundreds of doctors speak on their treatments and protocols and the steps that they have taken with their patients to beat cancer (many of them have faced cancer themselves).  We came home with loads of information to sort through and process and decisions to make.  The last step in this process was to meet with a neurosurgeon here in Ohio to determine their thoughts and what they recommended.  It took almost a month to get an appointment with this surgeon.  Before they will meet with you, they take your entire medical record before their tumor board to determine a course of action for your treatment. Our meeting with the neurosurgeon was a little disappointing.  He didn't have much encouraging to say about Benjamin's options.  He told us that the only cure would be to do chemo and radiation... I told him the first time Benjamin was diagnosed we were told that this treatment would maybe prolong his life two to three years.  I asked him how long this cure would last and he excused himself to leave the room.  He came back about five minutes later with a research study to show us.  He said that this treatment seems to be doing a little better since the last time we went through this and now the average is 2 years... with the possibility of living as long as ten more years given the type of cancer that Ben has been diagnosed with.  We asked a lot of questions, curious what he would say about the things we had learned in Texas without a lot of encouragement.

After Benjamin was diagnosed with cancer the first time, we heard about a Dr. Burzynski (Dr. B.) in Texas who treated cancer patients who traditional medicine had given up on.  He determined that if the tumor came back he would either see this doctor in Texas or Dr. Gonzalez in NYC.  Since Dr. Gonzalez passed away shortly after we first started seeing him last year, we started researching Dr. B. once again and following the reports from his research and clinical trials.

We spent the past two weeks in prayer trying to determine whether this was where God was leading us to next.  I called the clinic last week and requested their application packet.  I was told that this treatment in Texas was an option and we sent in Ben's medical records last Thursday.  We spoke with the doctor's office today and will be heading to Texas this weekend for an appointment on Monday morning.  The doctors will meet with us on Monday for 3-4 hours to discuss the treatment and if we agree to move forward, they will start the treatment on Tuesday.  We were told to expect to be there for 1-3 weeks depending on how long it takes to get Benjamin adjusted to the treatment and for both of us to learn the regiment he will be on when he comes home.  For those of you curious to read about this treatment: It typically involves an antineoplaston therapy: http://www.burzynskiclinic.com



We understand that not everyone will agree with the decisions that we have made to travel and be a part of this clinical trial.  We ask that regardless of your feelings, you pray for us as we travel.  We have prayed and feel this is the direction that God is leading us!

In addition, we ask that you pray:
1.  That Benjamin will take to the treatment quickly and that we will see miraculous healing.  That even the doctors will be shocked at how quickly he recovers.
2.  For safety for our entire family as we drive to Texas this weekend.
3.  That God will provide the funds we need as the clinical trial is not covered by insurance.
4.  That our children will handle the travel well and that they will understand and feel loved by us while on the road and staying at hotels.
5.  That we would find renters for our house in Tennessee.  We will be stopping there this weekend as our current tenants have just moved out.  We are praying that the property managers will find new tenants quickly!!!

As always, we thank you all so much for your love and care for us!  God is so good, and we look forward to sharing with you as we learn and grow from this!

The waiting room...

As I sat in the waiting room at NYU Thursday morning while Ben had a follow up MRI, a million thoughts rushed through my mind.  We prayed before he went in and joked about how fast the scans have been since we started having them done in the city.  He went back and I settled in to read a new book while I was waiting.  It didn't take long before my mind wandered from the book and I started to watch the clock.  The minutes ticked by and as the time ticked by, I let fear start to trickle in.  Before long my emotions started to get the best of me.  What could be taking so long?  As the minutes turned into an hour I started to lose faith in the good results and my prayers started to change.

I looked at my Bible in my hands and the book I was trying to focus on and thought how similar this wait is to my faith.  When you are sitting in the waiting room it seems like time drags on forever.  It can feel the same way when you are waiting on an answer from the Lord.  Time keeps on passing and you keep on waiting.  It's hard for me to keep having faith and believing for a good report the longer it takes for that report to arrive.

Sometimes we lose faith in our Lord the same way that we lose faith in the results.  We wait and wait for Him to show Himself and when he doesn't, we start to give up on Him.  We don't trust Him for the good report and we don't trust Him to bring about the results we want because they don't arrive on our terms.  

I believe that during those times we are waiting on Him, He is waiting on us.  Waiting to see if we will trust Him, waiting to see how long we are willing to wait for Him.  Sometimes he is working out a miracle or working on the details of the situation.  We only see the waiting room, and we can't see what is happening on the other side of the door.  

The silence in the waiting room Thursday morning was deafening, and in the end the results were not good.  It wasn't because of my fear, or my unwillingness to trust God either.  And I haven't given up my faith in His ability to move.  In fact, I am trusting and believing that once again He will use this situation to teach us that He is so much bigger than this.  And I will trust Him in the waiting rooms as I continue to pray for direction in wherever this next journey will lead us.

Two months ago, a small spot on Ben's MRI was questionable.  Thursday's scan confirmed that it was no longer small, and it was no longer questionable.  The doctor informed us it was a definite recurrence and that this type of tumor does not do well with chemo and radiation, that he felt a repeat surgery within the next few weeks would be imperative.  He wanted to consult with the radiologist before telling us exactly what he recommended we do.  His concern was that the last surgery was only 6 months ago and this tumor came back much faster than last time (and is obviously growing much faster).  A subsequent conversation with the doctor revealed that it was too soon to do a repeat surgery and the only option they felt they could offer was the one he previously said wouldn't help Ben.  We are praying for direction and guidance in what happens next, that God would lead us to the right doctors and we would have clarity about what decisions to make from here.

Margaret Thatcher said, "You may have to fight a battle more than once to win it."  We intend to win this battle once and for all and we would appreciate your prayers for us as we start down this path again.  

Please Pray:

1.  That God would lead us to the right doctors and the right treatment.

2.  That our children will understand and know that they are loved even when doctors visits take us away from them.

3.  That Benjamin will continue to be upbeat and encouraged and that he will be completely healed.

4.  That we will not lose faith in the waiting.  

Hebrews 11:1- Now faith is the substance of things hoped for, the evidence of things not seen.

(this video was sent to me by a sweet friend on Thursday who knew exactly what I needed to hear at that time)

**Sidenote for those of you who heard Benjamin had a seizure while we were in NY:  He forgot to take his seizure meds with him on our trip, so the second day he suffered a seizure and was rushed to the ER at West Point.  This was unrelated to the tumor as it is in a location that should not cause seizures at this time.  It was entirely related to the fact he forgot to take his meds for a day.  He is sore and still sleeping the seizure off, but we expect him to be fine in a few days!