Cycle 6, Scan #3

 Hello Everyone!  I hope you are all doing well and feeling peace and joy in your life.  Amid all of the trials we face in this life, there are the tender mercies and peaceful moments where we feel Heavenly Father's love for us and his assurance that our future is known to him and he has already prepared the way for us to return to Him.  As we press forward in faith we will feel more confident in God's plan and our desire to Follow Him will increase.  Your prayers and faith in my behalf have helped me to wake up each morning grateful for another day to experience this life, to learn and grow, to be there for someone in need, and to make connections with other people.  This is a truly amazing experience we have been given.

Well, I had my scan on Monday, Oct 4th.  We talked to Dr. Slotkin on the 5th.  She was pleased with the results of the scan.  Everything was pretty much unchanged from the previous scan.  She had been a little concerned about the previous scan because it showed mixed results, which can be a sign that the medicine is losing it's affect.  She liked that this scan showed stability throughout the body.  She said that it even leaned slightly to improvement, but nothing significant.

HOORAY!!!!  We love stability.  We will keep going with the study 💪😀😁💓

Angela and I were here all summer long.  She flew back to Utah after Labor Day to be with the kids and wrap up some loose ends.  She came back to New York and is now back in Utah.  She will come out one more time and then we will go back to Utah together.  WE ARE SO EXCITED TO BE TOGETHER AS A FAMILY!!!!!!  This experience has really helped me to appreciate the sacrifices that our troops make to protect our nation.  They have to be away from their families much longer than 4 months and they have a difficult job to do while they are gone.  Thank you to all those serving to make us safe.  

I will have to fly back and forth to New York every three weeks to get the trial drug, but we got permission for me to be in Utah for the rest of the cycle where I am not getting the trial drug.  This is a huge blessing.  We are so excited to be together.

While Angela has been gone, different families in the Manhattan 1st Ward have brought me meals.  They did this all on their own with no solicitation, I promise.  They said they wanted to serve and this was the idea they felt was most impactful.  I have been able to visit with several brothers when they drop off the food. Being able to talk to another person after working all day remotely and being alone in the hotel, is a wonderful sanity saver.  These are wonderful men trying to raise righteous families here in the city.  They are an inspiration to me.

Angela and I have been taking a Self Reliance course through our Utah stake.  It is a great course that is helping us become less dependent on others and teaching us some really good skills that we can teach our children.    It is fun to interact with the other member of the class and create new friendships.  

I am so thankful for General Conference.  It was very uplifting to hear the messages and feel the power of the speakers' testimonies.   I am thankful for a living Prophet and Apostles and other church leaders that are in tune with the Spirit and share God's counsel with us.  I recognized several areas that I would like to improve in before our Savior returns. I will work on it in small degrees like the British cycling program.  Steadily improving, one adjustment at a time.

I thought that reference to Naaman and washing in the River Jordan was very applicable.  The prophet may counsel us to do something that does not make sense to us, but if we trust the Lord and his promise that we will never be lead astray by the prophet, I believe will be blessed.

Thanks again for all of your faith, prayers, love, and support.  You bring the silver lining around the darks clouds of life.  We feel your love and are strengthened by it.

--Doug--

A Time to Reflect and Be Grateful

 Hello all you wonderful people 😁.  I hope you are doing well and having peace and joy in your lives.  

These past six weeks have gone by quickly!  I think is has been accelerated by different events that have happened over the past few weeks.  One thing is the kids have started school - HUGE THANKS to all those that have taken care of (and continue to take care of) the kids and our house.  Many people are helping and working together to make sure the kids' needs are being met.  We could not make this work without you.  

Another thing that happened is a hurricane hitting the eat coast, on the east part of Long Island.  Fortunately it didn't do anything serious where we are at.  It did keep us occupied as we checked it each day.  

This past week, my dear grandmother Annabea Anderson passed away.  She was 99 years young.  She always had a smile and always made you feel special when you visited her.  We are so thankful for her life and all she taught us.  We are grateful she can be free from the burdens of mortality and is with her sweetheart and children that passed on before her.  We were able to watch the funeral services over Zoom.  It was such a blessing to be able to feel a part of celebrating her life.

New York continues to be loud and dirty, with moments of peace and beauty.  We have been able to go to the Manhattan Temple a few times.  When you are in the temple, you do not hear any of the noise of the city - no sirens or honking or yelling.  It is a sacred, quiet place that is truly a cover from the storm.

On a side note, US Open has an office for athletes just up the sidewalk on the corner.  We think it is part of a gym and must have some tennis courts or something the tennis players can user for training or practice.  We have been seeing great athletes in the hotel and on the sidewalk, having no idea who they are, but knowing they must be good to be a part of the tournament.  We heard a few different languages being spoken (which is actually normal for New York, so it may not have meant anything).  We tried to be friendly so they had a good impression of American hospitality.  

Now it is time for the medical update.  I had a scan last week and talked the result over with the doctor.  It was a mixed bag overall.  One scan showed disease regression in certain places (HOORAY!), but the other scan showed an increase in metabolic activity and slight growth in some tumors.  Yes, I do have two scans each time they do scans.  They measure the tumor growth and activity using different mechanisms, so together they give a more complete picture of what is happening.  We are really happy about the disease reduction and are going to focus on that aspect of the scans.  We will continue the study and I start the next cycle tomorrow.

We have been truly blessed by all of your love, faith, support, prayers, and donations.  We could not have made this work without your help.  We pray for you and know that you will be blessed for your kindness.  Heavenly Father and Jesus Christ are real. They are watching over us.  They are guiding us and we are trying to follow them.  I know that we will be blessed as we follow our Savior and do as he would do, especially in how we treat others.  

With Love and Gratitude,  - Doug -

Week 5: Reasons to Celebrate!

 Dear family and friends, I am so excited to share the results of the first scan since starting the new drug.  I have only had two doses of the new drug so we weren't expecting anything special with the scan, just hoping for stability.  Well, Dr. Slotkin called today and reported that not only did the drug provide stability for several tumors, it also showed shrinkage and less activity on others.

HOORAY!!

We are so pleased with these scan results.  We are feeling very blessed.  Heavenly Father has given us a tender mercy and hope for the future.  We will keep the course and start cycle 3 on Monday.

Thank you all for your prayers and faith in my behalf.  We have been so blessed.  A HUGE "THANK YOU" to all those taking care of the kids and the house.  We are so blessed to be able to stay in the hotel we are at.  The doctors and nurses have been amazing.  So much to be thankful for.

Thanks again for all your love and support.  We love you and miss you.

-Doug-

Week 3: Time to explore the city!

 Hello Everyone,

I hope this post finds you well and at peace.  I have been reading in Mosiah and was impressed with how many times King Benjamin bears witness of our Savior and the promise that all who follow him to the end, will have peace in this life and eternal life hereafter.  I am not perfect and I make my fair share of mistakes, but I can honestly say that I am trying to be like my Savior, trying to give up the natural man and life a spiritual life.  I have felt the peace that can only come from the Holy Spirit.  It is what keeps me anchored and pressing forward.

This is week 3 of the clinical trial - my FEEL GOOD week.  The chemo is essentially out of my system and I am preparing for Cycle 2 to start on Monday.  Last week, week 2, was a mixed bag.  For a day or two my white blood cells were zero, so I had to be really careful about not getting an infection.  On Friday my platelets were low enough on that they gave me some.  They are really nice about that type of thing.  On Monday of this week, my blood levels were back up and they gave me the rest of the week off.  Overall, I felt good most of the time, but had low energy.  Week 3 is shaping up to be a good week.  I have more energy and feel like exploring.

I am so thankful that my employer allows me to work from New York.  We couldn't have done it otherwise.  We do have exciting plans for the weekend.  I will tell you about in the next post.  Angela's feet and my feet are getting a good workout.  All of the surfaces here are hard. Even the few places with carpet have little padding.  We are sometimes hobbling along by the end of the day if we have had to walk a lot.  

We have met some very nice people here in New York.  We have gotten help from strangers at the subway. the staff at the hospital are always nice, and the hotel staff are very nice.   The church members have been wonderful.  We had dinner the other night with a family.  They have three adorable children.  It made me think of my kids and the hugs I wish I could give them.  We are so thankful for the wonderful family and friends that are creating places of love and security for the kids.  

Thank you all for your prayers.  You love and support are so important to us.  We feel the power of your faith in our behalf.  We love you all.

-Doug-

Week 1: The Clinical Trial

Hello everyone!  I hope this post find you happy, healthy, and feeling blessed (or at least one of those ; )

We have been in New York for two weeks now - boy how time flies when you look back at it.  We have had our moments where we are counting down the seconds, but most of the time we find ourselves at the end of the day hoping we accomplished all that we needed to.  

So, the protocol that I am on for the summer is a three week cycle, repeated indefinitely.  The first day of the cycle I take two chemo drugs: the new drug they are testing and an existing drug used in my type of cancer treatment.  Days 2 - 5 of the cycle, I get just the existing drug (which I was taking in Utah).  Days 6 - 21, you recover from days 1-5.  Patients sometimes need a platelet transfusion.  Their white blood cell count will drop for a day or two then bounce back up.  

I started a cycle two Mondays ago.  I didn't need any transfusions, but my white blood cell count was basically 0 for a couple of days.  I am feeling better now.  The major side effect so far was a stomach cramp on Day 1.  We will pay attention on the next cycle and see if it happens again.  It wiped me out for the day.  

We are exploring New York between medical appointments and work.  There are so many people in Manhattan.  There is something new around every corner.  

We have been able to attend church in the chapel that is in the same building as the Manhattan Temple.  The members are very kind and friendly.  We look forward to getting to know them better.  Some of the members are letting us borrow some office and kitchen items for the hotel room, so Angela can teach piano, I can work more easily, and so we can prepare more meals here at the hotel.  Everything is very expensive around here.

We are so thankful to you all.  We feel the power of your prayers and your constant love and support.  We know that Heavenly Father's miracles abound at this time.  We hope to spread his love while we are here.  It is sometimes hard to know how to meet a need you see, but we know Heavenly Father will guide us as we act on our desires to help others.

May Heavenly Father bless you all.

-Doug-

All systems are GO! (and we made it to NYC safely)

 Dear family and friends,

Thank you for all of your prayers in our behalf these past weeks as we prepared for the New York trip.  We felt the strength and comfort that comes from those prayers.  We have been richly blessed by so many of you.  You have given of your time, energy, and substance in order for us to come to New York, all with the possibility of us having to turn around and come right back.  Heavenly Father knew what was going to happen and has led us in our thinking and our actions.  We have been truly blessed with guidance and direction, comfort and peace.

We flew on Wednesday, June 2nd to New York.  My angel mother came down and stayed with the kids until the boys went to stake young men's camp and Annie went to the neighbors for a week.  On a side note, the boys had to come back early from the camp because of a wild fire.  Please pray for rain!!  Annie is having a wonderful time living with the neighbors.  I have seen pictures of donuts and swimming and heard news of a movie.  That is my kind of summer!

Thank You!! to everyone that is helping our family this summer.  We have family and friends taking care of the kids and watching over the house.  We are so blessed to have such wonderful people in our lives.  We could not have come here to New York without your help and support.

We had a full day of tests on Thursday, June 3rd.  We got there at 8:15 pm and did not leave until 5:15 pm.  It was a long day.  Dr. Slotkin is very nice, professional, knowledgeable, and honest.  She didn't try to get our hopes inflated.  She stated the facts and expressed her hope that the new chemotherapy would work, but made no promises.  Angela and I have enjoyed working with her so far and are sure it will continue to be a great experience.  We are hoping to see Dr. LaQuaglia while we are here.  He is the pediatric surgeon that did my surgeries in 2014.  He is a wonderful doctor and was very kind to us.  

Friday, I was able to work from the apartment after getting my work computer to connect to the hotel internet.  I love Google, but in this case Edge got me where I needed to go.   We needed to get some things for the hotel, so we headed out once I finished working.  The amazing thing about New York is that almost anything you need is within walking distance.  We have a grocery store just down the street.  There are many restaurants.  There are all sorts of businesses within a few blocks of where we are staying.  We see people on bikes whizzing down the streets which makes even more things accessible to them.  We have needed to take a taxi a few times to get where we needed to be on time and with our bags.  That is its own kind of thrill ride.  

Angela has connected with some sisters (female members of The Church of Jesus Christ of Latter Day Saints) and they have been so helpful.  They have lent us kitchen and office items.  They have taken Angela places and shown her helpful things.  I think they are going to be a necessary social contact for Angela.  I will be trying to work most days and Angela will be teaching piano lessons for part of the day and she is going to need some good social interaction.  We did find a waterfall in a small park with some trees not too far from our hotel.  It will likely provide a place of solitude, a place to escape to now and then.

Dr Slotkin has many medical professionals and staff that work with her.  We refer to the group as the Team.  The Team called on Friday and said that all of the tests they had done looked good and that I was officially registered for the study.  WooHoo!!!  That is great news.  I start treatment on Monday with the new chemotherapy.  We know that you will be praying for us.  Please keep our children in your prayers also.  This is the longest we will ever have been separated from each other.   We plan on doing 2 cycles, a scan, two cycles, and a scan.  At that point we need to decide if the treatment is helping or not.  We will need to decide if we continue with the study or abandon it.  We will be praying intently for Heavenly Father's will to be done.  

We are praying that we can be of good to the people here in New York.  We hope that we can lift a burden or comfort a broken heart.  There is much need all around us.  I hope I can have the courage to act on the promptings I receive.  May Heavenly Father and Jesus bless you all.

With Love - Doug -

Countdown to New York

Dear Family and Friends,

From the bottom of our hearts, we say "Thank You.  We love you!".  Thank you so much for your generosity over the past month.  You have opened your hearts even more than they were before and donated your resources at an amazing level.  You reached the fundraising goal in a short amount of time and even exceeded it.  We are truly humbled by your generosity and charity towards us. We know that you will be blessed for your kindness and sacrifice.  We are feeling strengthened and hopeful about the future and what could happen this summer.  May Heavenly Bless You All!

I had a PET scan at the beginning of May.  The results came back as slight progression in some areas.  This is good news for us.  We reached out to Dr. Slotkin at MSKCC and she did not have any concerns. We are a GO!  Mercy Medical is a wonderful organization that provides flights for medical reasons to patients and caregivers.  They are arranging our flight to New York for June 2nd.  We don't know the exact return date for either of us, so they were kind enough to do a one way ticket.  We won't know the actual flight info until a week before.

We are blessed that we can take a family vacation the week before we go to New York.  We are going to family and friends in Washington and visit Angela's brother in Idaho on the way there and my family in Howell on the way back.  This will be a wonderful time together before the summer separation.  I am so thankful for the technology we have that will allow us to stay "connected" with family and friends while we are in New York.  It is a great blessing and will help Angela and I's hearts as they ache for the kids.

We love you all.  Thank you again for your kindness, love, prayers, and support.  Heavenly Father  and Jesus Christ are in the details of our lives.  There are so many blessing and tender mercies being poured out upon, we but need look for them and we will see them.  Peace come from letting God prevail in our lives.

With Love, 

Doug

Heading to NYC

https://gofund.me/29542bda 

Hello Everyone!  I hope this post finds you happy, whole, and full of gratitude for the many blessings we have in this world.   

My dear friends and family, we have some big news for you.  There is a clinical trial for my specific kind of cancer - DSRCT.  It is at Memorial Sloan Kettering Cancer Center in Manhattan, New York.  This is the same hospital I went to in 2014 for my surgeries and abdominal flush.  We really feel that those procedures allowed me to beat the odds and still be living life to its fullest 7 years later.  So, MSKCC has a special place in our hearts.

Why are we interested in it now?  Well, the treatment that has been effective at keeping the tumors at bay, is causing me some bowel issues.  The side effects are worrisome, so we have been looking at other treatments.  The clinical trial has been going on for a while, but we hadn't felt impressed to pursue it.  We now feel impressed to pursue it.  I will have a PET scan on May 5th.  We will send the results to MSKCC and have them review the scan and make sure I qualify for the study.  (Apparently you can be too sick, or they don't want you as part of the study...)  The interesting thing is that the study uses a chemotherapy that I am using now along with the new chemo that is the purpose of the trial.  So, it won't be a complete shock to the system.  We are hoping this combination shrinks the tumors and buys us even more time for our family to be together. 

We will need to be in New York all summer to have enough of the treatment to decide if it is effective and helpful. At the end of the summer we will have to decide whether I stay and get more treatment, or come home.  That is the big unknown.  We are moving forward in faith, praying earnestly for guidance and direction.  Please keep praying for us!

We love you all, and know that you will be blessed and you keep doing as the Savior would do - serving those around you.  Your kindness and love have made a huge impact in our lives and we know you have impacted many others - that's just the type of people you are.  Thank you!

A good friend created a GoFundMe account for us.  Please share this link below as you are able.  Your friendship is the gift we treasure the most.

Forever grateful,

Doug and Angela and kids

https://gofund.me/29542bda 

Back to the old blend

 Hello Everyone!  I hope this blogpost finds you all well and happy 😀.  I have been blessed in many ways since the last post.  We still have some questions, but we are moving forward with faith.

I was supposed to have another chemo cycle at the end of January, but that didn't happen.  Here is the story...

Mid January, I was experiencing pain in my left shoulder.  I went to the doctor and they ordered an x-ray and an MRI.  Two small tears in the bicep and possible small tear in the tendon.  Thankfully nothing was of major concern.  They gave me a cortisone shot and sent me on my way.  That seemed to do the trick and I was pain free again.  

A few days later, I started the next round of chemotherapy with my Vincristine infusion.  Later that day I wasn't feeling well and not keeping things down.  I ended up going to the hospital out of  concerns for dehydration.  They took a scan and diagnosed me with a bowel illuis.  We had to wait for my bowel to wake up and start doing its job.  This unplanned hospital visit caused me to miss the rest of the chemo cycle.  

We thought things were on the mend, but a week or so later, my stomach started to hurt again.  I was keeping things down, so that was good, but I did not feel well.  I missed the Kotter family devotional and felt miserable all weekend.  Monday was a holiday, or else we would have went up to Huntsman.  I was on a liquid diet, just to be safe.  I ate so many popsicles.  I woke up Tuesday morning feeling better than I had felt for the past 3 days.  We still went up to Huntsman, hoping they could give us some answers.  They couldn't find anything, so they sent me home with the plans to get an upper GI scope and a colonoscopy.  

My wonderful father-in-law helped a miracle happen and convinced their GI doc to do the upper scope and colonoscopy the following Tuesday (Tuesday of this week).  The scoping when well.  The doctor did not find anything majorly wrong.  I have a spot in the esophagus that stomach acid has eaten away at.  He gave me a prescription for that.  The funny thing is that I rarely get heartburn.  The other thing he said was that my colon was rigid.  It was not as flexible as a colon should be.  (I have never been known for my flexibility - ha ha)  This may contribute to constipation, so I am supposed to take Miralax everyday.  Fun, Fun!

We talked to Dr Chalmers at Huntsman (she is my oncologist) about the different options for treatment.  We all agreed to stop taking Vincristine, at least for a season.  It is known to contribute to bowel issues.  It may end up being an on and off thing as it is effective at keeping the tumors from growing - but it comes with a price.  The options we discussed are (1) keep taking temozolomide and Irinotecan - the oral chemo I take 5 days a week at the beginning of the cycle, (2) take a new drug that may or may not help - it would be a gamble as there is not a lot of studies done with my type of cancer, and (3) go to Memorial Sloan Kettering Hospital in Manhattan, New York for a clinical trial.  This would be another gamble.  

It was a tough discussion.  There are just not enough cases to give doctors a clear and effective treatment plan.  It is good in a way, as I would not want anyone else to go through this.  Also, you cannot be too sick or else they may not let you in the study.  Doing the same thing that you have been doing and expecting different results, is kind of crazy.  Trying a new drug could back fire on a patient.  So many "what if"'s.......

I am so thankful for the Holy Ghost and for personal revelation.  I am also thankful for a Father in Heaven that wants us to learn and grow and increase in our abilities.  I am thankful for a Savior that comforts and strengthens us during the struggle, as we try to figure out what the correct path forward is.  I know that He will now allow us to walk to wrong path for tool long if we are constantly seeking and learning and asking.  By myself, I am weak; but with Christ, I can do all things.  I know Heavenly Father will give me inspiration through the Holy Ghost and that Jesus will give me the strength to act on it.  I know he will do the same for you!

So, right now, we are planning on option 1 - keep taking the temozolomide and Irinotecan.  We feel that right now is too early for the study, but maybe later this year.  Option 2 is still on the table if option 1 results in significant cancer growth.  We go forward in faith.

Thank you for your prayers, love, and support.  I feel your strength often.  I know that angels are watching over us, both the seen and the un-seen.  

I almost forgot: Exciting news, I am getting my COVID-19 vaccine on Monday - Hooray!!  I am so thankful for modern medicine and all the advancements that Heavenly Father has inspired.

Thank you again for all you do for me and my family.         

May God bless you all, Doug.

Best use of a chemo box

So I have been getting liquid chemo delivered by home health in a Styrofoam type box with ice packs and bubble wrap.  We have just been throwing them away, not sure what else we can do with them......until today.  We are still throwing them away, but we are utilizing them for fun first.

we turned then into the game where you try to make squares on a grid.  One for Annie and one for Daniel.  Trying to find fun wherever we can.