BMT Day 559 – She Said Yes!!!

Wednesday, November 14, 2018

  1. Pray Kathy’s Lymphocyte count will decrease.
  2. Pray that Kathy will be healed from this Rhino Vires
  3. Praise that Kathy’s leg swelling has gone down.
  4. Pray that Kathy’s IgG will increase.
Kathy’s blood counts on BMT Day 559 November 14, 2018
Blood Item Actual Target Status
White Blood Count 10.85 4.4 – 11 Good
Red Blood Count 4.30 4.0 -5.2 Good
Hemoglobin 12.9 12 – 15 Good
Platelet Count 241 150 – 350 Good
Neutrophil 2.77 1.5 – 8 Good
Lymphocytes Absolute 6.34 1.1 – 4.8 Almost…I think I Can!
Potassium 4.1 3.5 – 5.1 Good
Creatinine .8 .5 – 1.2 Good
Magnesium 2.1 1.6 – 2.4 Good
Neighborhood Walk 2.1 mi 35 min Best Time Goal 2.4 mi 38 min MET (BMT Day 275)

Yes!!!Kathy got the ok to sail to the Bahamas this the winter. Lord willing, we will depart Annapolis the first opportunity the weather gives us to head south on the Chesapeake Bay to Norfolk, VA after December 7, 2018. Kathy went from July 10, 2018 to November 14, 2018 without having an oncology appointment. One of the interesting things about our appointment today, November 14, is that it was exactly two years ago on Nov 14, that Kathy’s Oncologist told Kathy it was time for treatment. So, we hussled to Unicorn, our 422 Pearson sailboat, and removed all the provisioning for our planned Bahamas trip that was scheduled to start the day after Thanksgiving. We got her hauled out of the water prior to Kathy’s first chemo treatment on November 21, 2016.  This year we are doing just the opposite, Unicorn is in the water and we will start loading the provisions now for our December departure. The other thing of interest about Kathy’s appointment today is that this is the longest she has gone without an oncology appointment in 11 years (4 months)! Her blood work was good.  She has two issues: 1. Her Lymphocytes are still a little high and 2. She has been battling a cold and ear aches/infections since October 2, 2018.   Kathy’s oncologist thinks Kathy’s IgG level may be low so she put Kathy in for an additional lab to check her IgG level.  We should get the results of this test in a couple of days.  We are expecting it to be low and Kathy would need to go back to Johns Hopkins to get a blood infusion of IgG. We are actually hoping it turns out that her IgG level is low because that would explain her persistent cough and cold symptoms over the past six weeks. God has been so gracious to us over the past two years.  He has walked with us every step of the way on this journey we are so thankful for His intervention in Kathy’s healing process. Giving us wonderful friends and prayer partners.  We will never take for granted the prayers and encouragement you all have given us over the past 11 years!!!

We selected a theme Bible verse at the beginning of this journey which has encouraged us so many times along the wat (see below). We also heard a song during Kathy’s treatment that we picked up as our theme song.

It’s called: Be ready to sail by Claire Lynch

In a moment of reflection
Looking back upon my life
There were times I changed direction
Letting fortune pass me by
There were seldom second chances
And nothing so profound
As a lesson learned the hard way
That I’ll use next time around

Be ready to sail
When a good wind blows your way
Be ready to sail
Cast your fate upon the water
Catch a big wave by the tail
And when a good wind blows your way
Be ready to sail

There are those whose hearts are restless
For a new and different shore
Filled with second guesses
The never climb on board
While those with faith to guide them
Leave all their fears behind
Chasing down their destination over on the other side

Be ready to sail
When a good wind blows your way
Be ready to sail
Cast your fate upon the water
Catch a big wave by the tail
And when a good wind blows your way
Be ready to sail

Be ready to sail
When a good wind blows your way
Be ready to sail
Cast your fate upon the water
Catch a big wave by the tail
And when a good wind blows your way
Be ready to sail

You can listen to the song on you tube.  It reminded us to plan our next adventure even when Kathy was weak and hearting and look for better days ahead. We are thankful that “We are ready to sail”

We got the rest of Kathy’s labs back.  Her IgG levels were low but not low enough to warrant an infusion.  We did find out that she has contracted a Rhino Vires and that has really knocked her out…  She has been in bed all day Thursday, Friday and Today. We are praying that Kathy will be healed from this vires before our departure date.  “Be Ready To Sail” …

Isaiah 43:1b-2 “Do not fear, for I have redeemed you; I have summoned you by name; you are mine. When you pass through the waters, I will be with you; and through the rivers, they shall not overwhelm you; when you walk through fire you shall not be burned, and the flame shall not consume you.” “Love never fails” … Blessings, Phil & Kathy

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Kathy and Unicorn…Ready to Sail…Waiting on a good wind!
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BMT Day 432 – Unremarkably Nominal…That’s a Good Thing!

Tuesday, July 10, 2018

  1. Pray Kathy’s Lymphocyte count will decrease.
  2. Pray that any remaining LGL will be eliminated
  3. Pray that Kathy’s leg swelling will be healed.
  4. Pray we continue to learn how to manage Kathy’s fatigue.
  5. Praise that Kathy’s IgG has increased.
Kathy’s blood counts on BMT Day 432 July 10, 2018
Blood Item Actual Target Status
White Blood Count 11.44 4.4 – 11 High
Red Blood Count 4.36 4.0 -5.2 Good
Hemoglobin 12.4 12 – 15 Good
Platelet Count 188 150 – 350 Almost
Neutrophil 1.94 1.5 – 8 Good
Potassium 4.2 3.5 – 5.1 Good
Creatinine 1 .5 – 1.2 Good
Magnesium 2.1 1.6 – 2.4 Good
Neighborhood Walk 2.1 mi 35 min Best Time Goal 2.4 mi 38 min MET (BMT Day 275)

I made it! I made 60 days without a doctor’s appointment or “event”. At my appointment today, my oncologist described my condition in some complex medical terms… He stated, and I quote… “You are boring!”   My last appointment was May 9 and since then I have had some minor bouts with graft versus host disease which included red spots on my arms, minor gastro issues and continued swelling in my legs and fatigue. Not sure if these are all graft versus host disease, but they’re probably all resulting from the BMT. My oncologist was not concerned with any of the symptoms we described and said naps are a good thing. I just need to discipline myself to take naps. The only concerning issue is that my lymphocyte count had increased since May 9thand my neutrophils decreased.  This could be no problem or an indication I may still have some lingering LGL. He asked if I had any other issues, I told him I had just one… I signed up for straight blonde hair after chemo and instead I have a curly grayish mop head! His response to that was laughing. I sure can’t complain though. God has really blessed us with great oncologists. Without the BMT and the tweaks of medication, I would not be here to share these blessings from God with you! Phil & I will never take for granted God’s care for us in the past two years and the prayers of his faithful servants for which we are eternally grateful. At the end of our appointment, our doctor asked if we’d be comfortable with our next appointment being in six months, which would be January 2019. Since we are planning to sail to the Bahamas in late November for the winter, we settled for an appointment on November 14 which is exactly 2 years to the day when he told us it was time for treatment! This will be four months till my next appointment…the longest time that I have not seen an oncologist in eight years!

Since my last appointment Phil and I have been trying to do many of the things we did before treatment. We led a Father/Child Adventure weekend together, rode a century bike ride, did an extended biking/camping trip on the C&O canal and Great Allegheny Passage, covering 460 miles from Harpers Ferry to Connellsville, Pennsylvania. Plan to leave for a three-week cruise on our sailboat down to Ocracoke, North Carolina in preparation for a Bahama Cruise this winter on our sailboat, Unicorn! We plan on stopping at several towns on the way, including a stop at Roanoke Island and see the Lost Colony. My life is not quite not back to normal, but it’s getting pretty close. I’ve been told on several occasions that I will never be the same, (who could be the same after I have seen God work so clearly in my life over the last two years). We are forever thankful for all the prayers that have been lifted up for Phil and I over the last seven and a half years. Hopefully our next blog will be after our November 14thappointment.  Until then thanks again for your prayers.  We love you all!  Blessings, Phil and Kathy

Isaiah 43:1b-2 “Do not fear, for I have redeemed you; I have summoned you by name; you are mine. When you pass through the waters, I will be with you; and through the rivers, they shall not overwhelm you; when you walk through fire you shall not be burned, and the flame shall not consume you.” “Love never fails” … Blessings, Phil & Kathy

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Sailing to St Michael’s wing on wing
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Enjoying a day at Busch Gardens with the grands!

Phil and Kathy’s Kamikaze Bike Trip: “If It Didn’t Kill You …You Wished You Were Dead! Harper’s Ferry to Connellsville, PA and Back 460 Miles

Summary: Kathy was diagnosed with Chronic Lymphocytic Leukemia (CLL) in 2011.  We knew that she would need treatment (Chemo Therapy followed by a Bone Marrow Transplant (BMT) in the future).  Sure enough in November 2016 Kathy’s Oncologist informed us it was time for treatment.  From November 2016 to May 2017 Kathy was prepared for a BMT with our oldest son John being the donor.   Chemo and radiation was used to get her blood and bone marrow ready for the BMT. On May 4, 2017 she was infused with new stem cells, a new immune system and if things worked out right a new lease on life. We were blessed and Kathy recovered from CLL and the BMT.  There were several setbacks but Kathy persisted through a year of medications, doctor’s visits and a daily walking regime. May 4, 2018 was her one-year BMT anniversary. To celebrate she rode a century (100 mile) bike ride on May 5, 2018. We also wanted to see how she would fare on an extended bike ride so we planned a ride from Harper’s Ferry, WV to McKeesport, PA and back.  550 miles over 13 days.  Below is a summary of our adventure.

Wednesday, May 30, 2018: Departed our nice dry house to venture to Harpers Ferry in the pouring rain! Yes! it was pouring rain when we got to Harpers Ferry. Waited an hour or so for the rain to stop, figured we could load the nine panniers on our bikes before it started raining again and we could at least start riding while it was not raining. The National Park Service (NPS) allows hikers and bikers to park for extended periods if you are biking or hiking the C&O Canal.  Just have to fill out a form with your trip plan.  The only drawback is to get from the NPS parking lot to the C&O Canal you have to cross a pedestrian bridge and go down 40 or fifty step spiral stairs to the C&O Canal Towpath which means you have to off load your panniers and carry them and your bikes down the steps. Started biking between three and four PM from Harpers Ferry (C&O mile 60). Rode 20 miles to a hiker/biker (H/B) campsite and RON at Horseshoe Bend H/B located at mile 80. Got in 20 miles with very wet towpath with constant 6-inch puddles but no rain.

Thursday, May 31,2018: Started biking at 6:30 am. Ate breakfast (oatmeal) and read our Community Bible Reading (CBR) after 10 miles while taking a break. Had lunch in Williamsport, MD (mile 100) at the Desert Rose Cafe. Heard lots of rumblings of approaching storm, but the weather forecast did not call for rain for another couple of hours so thought we could make it to Hancock, MD (mile 124) before the rain would start. At mile 114 you can get on the Western Maryland Rail Trail (WMRT) which is a paved rail-to-trail, very comfortable riding. Unfortunately, as soon as we got on the WMRT it started pouring rain and poured for the next 10 miles to Hancock, MD.  To say we got soaked is an understatement! What kept us going was that we knew there was a Hardee’s in Hancock and that meant all the hot coffee we could drink while we planned what to do next.  Got to Hancock and as Kathy was riding into the Hardee’s we noticed she had a tire going flat. We changed the inner tube in light rain and retreated into Hardee’s for some well-deserved hot coffee. Went ahead and had dinner at Hardee’s and used our handy Priceline app to get a hotel room in Hancock at the Super Eight… and their hot showers were Super! Ended up going 44 miles for the day.

Friday, June 1, 2018: Underway at 7:15am. Got to Paw Paw Tunnel mile 157 around noon.  Nice break from riding as we walked our bikes through the 3,100-foot tunnel that took 14 years to complete back in the 1800s. Had lunch in Oldtown, mile 167, at the country kitchen which is the cafeteria to the Old Town School which closed in 2000 and students are now bused into Cumberland. In the Country Kitchen they have pictures of all the graduating classes while the school was in operation. Turns out that a friend of ours Jenny class of 98, grew up in Oldtown! Stephanie from class of 96 knew Jenny’s (maiden) name and helped us find her picture. We had a late lunch and sugar drinks at schoolhouse kitchen to keep the energy up. Thought storm was coming (we had no cell service). Decided to chance it going to campsite (3.2 miles from Oldtown). It was a sunny afternoon, set up, rested, dinner, clouds a brewing at 8pm. RON mile 169, Pigmans Ferry HB – 45 miles for the day.

Saturday, June 2,2018: Underway ~7 AM got to Cumberland, 9:30 AM… question, what to do? Heavy rain in the forecast for both Saturday and Sunday. We were already soaked so we could go another 15 miles to Frostburg, MD and get a hotel room or we could call it quits for the day and stay in Cumberland Saturday and Sunday nights.  In my younger days I would have told Kathy…Our Skin is Waterproof… let’s hit the trail to Frostburg.  Now that I am much older and at least a little wiser, I agreed with Kathy to stay in Cumberland and, yes, take a day off!  We stayed at a delightful guest house called the Guest House at 9 Decatur Ave. Great place to stay if you’re in Cumberland! We had use of the kitchen, coffee and snacks. 16 miles for the day.

Sunday, June 3, 2018: Breakfast at guest house, visited with Kevin & Lisa who also were biking and decided to stay there as well, worshiped with BEP via live Facebook feed. Still raining hard at 11am. Decided to stick with our plan and stay in Cumberland for the night.  RON Cumberland 9 Decatur Ave guest house – 0 miles!

 

Monday, June 4, 2018: Breakfast at guest house and did some catch up on our Community Bible Reading (CBR). Underway around 9:00 AM.  The first 24 miles of the Great Allegany Passage (GAP) takes you to the Eastern Continental Divide it is all uphill at a 1½ % grade. Doesn’t sound like much but with 50 pounds of gear on your bike it slowed us down to around 6.5 miles per hour. The Eastern Continental Divide is where the rivers change directions…on the south side the rivers run into the Atlantic Seaboard Watershed and on the north side the rivers run in to the Gulf of Mexico Watershed. What this means for bikers on the GAP its where you change from riding uphill to downhill. So…from the Eastern Continental Divide (ECD) to the northern end of the GAP located in Pittsburg you are riding slightly downhill. Our options for the day were to ride to the first town you get to on the GAP, Frostburg, MD 15 miles north (uphill) from Cumberland and spend the night or to go past Frostburg passing the Mason Dixon Line and the Eastern Continental Divide at ~ mile 24 on to Rockwood, PA at mile 43.  When we got to Frostburg we decided to finish up the uphill portion of the GAP and head on to Rockwood.  We got to Rockwood around 5:00 PM and set up our tent at one of our favorite campgrounds on the GAP, Husky Haven (Rockwood, PA). The temperature is about 10 degrees colder north of the ECD, so it was getting down in the low 50’s at night. A good day of riding.  Not much sun and no rain to speak of. Got in 43 miles for the day.

Tuesday, June 5, 2018: Got up had a leisurely breakfast of oatmeal and raisins and of course just before we finished breakfast it rained for about 15 minutes, just enough to soak all our camping gear. No big deal but it is always nicer to pack dry gear. The good news is that was the only rain we had to contend with for the day. The plan for the day was to ride from Rockwood, to Confluence, PA (20 miles) and stay at Outflow State Park which is run by the Army Corps of Engineers. They have biker campsites for $8/person and ½ price if you have a National Park Service Senior Pass. Got to Confluence around noon, setup our wet tent which dried very quickly in sunny skies with 30 to 50 knots of wind and got a nice shower before heading to town for lunch.  Little did we know that these strong winds coupled with the heavy rains we had Saturday and Sunday was wreaking havoc on the C&O Canal. The Potomac River was above flood stage approximately a foot over the towpath and the high winds were blowing trees down by the dozens along the towpath. More about this later. Had a good stay in Confluence and got some extra rest since we only rode 20 miles. Kathy’s rear wheel ball bearings were in need of repacking with grease as a result of all the rain, mud, etc. You could hear them wearing when riding. Fortunately, we had the special tool you need to take the rear cassette off, so we had no problem getting to the ball bearings. What we didn’t have was grease for the ball bearings.  Thought about just spraying with WD-40 and hoping for the best…but then remembered we had Bacitracin in our first aid kit. Cleaned and repacked the bearings with Bacitracin. Turned out to work like a charm and as a bonus we got rid of an infection in the ball bearings J. Over dinner we updated our plan since we had  had a couple of rain days we were not going to make it to McKeesport, PA as originally planned. We decided to ride to Connellsville, PA on Wednesday (27 miles) and then turnaround and head back to Harpers Ferry where we started. Connellsville is a nice stop because they have free camping right next to a Martins grocery store. This would allow us to stay in Confluence again on Thursday night.

Wednesday, June 6, 2018: Left Confluence 8:45 am. Turned out to be a fairly chilly morning, in the low 50’s, fingered gloves would have been nice. Held up for a 1/2 hour by a construction crew who were replacing a 2’ in diameter culvert across the GAP trail. Stopped at Ohiopyile, PA 10 miles north of Confluence for a rest and some breakfast at 11am in the morning at Falls Market. Did some more catch up on our CBR. Arrived Connellsville 2:15 PM.  Chilly day, only got to low 60’s. Camped in shelter just north of town at the free camp ground. Went to Martin’s for some snacks and pork chops to grill for dinner.

Thursday, June 7, 2018: Got U/W at 9:20 headed to Ohiopyile after buying some day-old doughnuts at Martins for breakfast. Arrived Ohiopyile at 11:30 AM and had a Philly cheesesteak sub at Falls Market for lunch. Left for Confluence at 12:45 PM.  RON Confluence Outflow Campground, ate dinner (pizza) at Lucky Dog Café. 28 miles for the day.

Friday, June 8, 2018: Departed Confluence at 6:30 AM. Got an early start because we wanted to get to Cumberland (63 Miles), before the forecasted rain started.  Stopped in Meyersdale for some ice cream. Got to Cumberland at 3:00 PM. Talked to the owner of a guide service and when he heard what we were doing gave us a voucher for an ice cream cone, so had desert before dinner. Had dinner at Wendy’s in Cumberland, lady bought Phil a strawberry lemonade. A day of freebies! The rain forecasted did not materialize, so decided to go another 16 miles on the C&O towpath and camp at mile 169 at Pigmans Ferry H/B campsite. 79 miles for the day, 26 of these miles were downhill from the Eastern Continental Divide to Cumberland. Still a good day of riding for us.

Saturday, June 9, 2018: Departed campsite at 6:15 AM. Based on the weather, the plan was to try to make it to Hancock (C&O mile 124) where we would get a hotel room because heavy rain was forecasted for late afternoon and early evening. Stopped in Little Orleans at Bill’s Place around 10:45 and had an order of onion rings while we had a well-deserved rest.  Lots of mud on the towpath and every mile we had to climb over several downed trees. Trying to get to Hancock & hotel before more rain. We only had four more miles after Little Orleans on the C&O Towpath until we reached the Western Maryland Rail Trail which is paved.  The four miles were rugged but made it to Hancock just as the rain started. Secured a room at the Super 8 in Hancock thanks to Priceline again. 45 miles for the day. Had dinner at a Pizza Hut that was walking distance from our hotel room.

Sunday, June 10, 2018:  Checked the weather (hourly forecast) the rain was supposed to stop around 11:00.  We waited to check out of the hotel until the last minute then went to the McDonalds across the street to wait for the rain to completely stop.  Started riding around noon. Wanted to get to Williamsport, (24 miles) before the rains started again.  The first 12 miles were on the Western Maryland Rail Trail so they were a piece of cake. The second 12 miles were rugged, several downed trees, lots of mud on the towpath that was deposited by the Potomac when it breached the towpath several days earlier. Once again started raining hard just before we got to Williamsport (C&O mile 100). Just 40 more miles to Harpers Ferry. In our younger days we would have said…the skin’s waterproof, let’s knock out these last 40 miles and head home this evening/night. Good thing there was a Red Roof Inn across the street from McDonalds, we decided to spend the night in Williamsport and tackle the last 40 miles the next day.  Little did we know the final 40 miles were almost unpassable. 24 miles for the day.

Monday, June 11, 2018: Raining when we woke. Checked the weather and is was supposed to stop at 11:00. No hurry to leave had breakfast and read our CBR. The rail stopped at 10:00 so we departed Williamsport, Maryland at 11:15 AM. We used a self-guided detour on roads from Williamsport C&O mile100 to C&O mile 85. From Williamsport the directions from McDonald’s are as follows.

  1. Go down E. Potomac St. .8 miles,
  2. Turn left on MD 63/MD 68 CONOCOCHEAGU E St. 1.2 miles
  3. Slight right to stay on MD 63 S. 2.8 miles
  4. Right on dam number 4 Road 1.8 miles
  5. Right to stay on dam number 4 road 2.4 miles
  6. Enter C&O Canal when road goes down steep hill and turns to the right.

The detour via road was 9 miles but put us almost 16 miles down the towpath. The disadvantage of the road was the constantly rolling hills and a very small shoulder on the roads. We got on the towpath at Mile 85 to find terrible conditions downed trees every ¼ mile, six inches of mud on the towpath and mosquitoes waiting at every downed tree to suck your blood.   We decided pretty quickly we would take the first available road no matter where it was going. We ended up getting off the towpath around mile 80 and went the rest of the way to Harpers Ferry via road. Got back to Harpers Ferry at 5:30 PM.

The real purpose of the trip was to see how Kathy could handle an extended bike ride 13 months after her Bone Marrow Transplant and treatment for Leukemia. She did extremely well.  No medical issues on the trip.  Only real issue was fatigue that would set in at around 2:00 PM each day so we took more breaks.

Despite the weather it was a true blessing to be able to do this bike ride together. There were many days this past year that we could not imagine being able to do a ride like this.   We thank our Heavenly Father everyday for His healing and the doctors He gave us to fight off this cancer!

Kathy is my HERO!  Phil 6/27/2018

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Oldtown is one of our favorite stops along the C&O Canal

 

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Stopped at the School House Kitchen in Oldtown, Md for lunch. The School House Kitchen is a must stop. C&O Mile ~166

 

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A baby owl on the C&O canal towpath

 

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The Guest House at 9 Decatuer Street – stayed two nights and dried out from the heavy rains.

 

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Free use of kitchen and Phil loves to cook!

 

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The Guest house at 9 Decatuer Street is definitely geared towards bikers.

 

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Not raining… we are… “Off Like A Herd Of Turtles Again!” 

 

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Passing the Mason/Dixon Line

 

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Lunch at Myersdale, PA

 

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Got stopped by trail repair from heavy rains we’d experienced, made passing through this section much easier.

 

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No bike trip of any length is a certified bike trip without bike maintenance/repair! Note: used bacitracin as lube for ball bearings.

 

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A nice hot lunch cooked at the Eastern continental divide!
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Cumberland, MD where the C&O trail ends and the Great Allegheny Passage (GAP) begins

 

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One of our campsites along the way

 

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More rains, brought more downed trees and mud!

 

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Phil trailblazing

 

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After years of escaping snake handling on father/child adventures, Kathy decided to put holding a snake on her bucket list. Phil found her a nice calm one!
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Nice set up in Connellsville, PA. Free camping and a block away from a Martins grocery store!
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You can only go so long in mud before you loose momentum and fall. Kathy had her usual share of slow motion falls, but NOT in the mud:)

 

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This kind of sight got tiring!!

 

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Phil searched for road detours, which although they had lots of hill climbing, were still much better than the canal option.

 

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This was triple dipper…and we’re NOT talking ice cream!

 

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Yet another successful tree crossing (oh and don’t slide down hill as the canal was on one side and the Potomac on the other!)

 

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Parking lot where we left our car in Harpers Ferry. A day or two after we started our ride, the part of C&O canal towpath through Harpers Ferry where we had started our ride, was over 10′ under water due to rain/flooding…no turning back! Kathy, where’s the kitchen sink???

 

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We didn’t get as far as we planned, but still got in a good amount of miles in very “do-able” chunks of time/distance. Phil is the best tour guide ever for me!!!

 

 

 

 

BMT Day 370 – Happy ONE Year Birthday…

Wednesday, May 9, 2018

  1. Pray the LGL will be controlled and eliminated by Kathy’s immune system
  2. Pray that we continue to learn how to manage fatigue.
  3. Praise that Kathy’s IgG is increase.
Kathy’s blood counts on BMT Day 370 May 9, 2018
Blood Item Actual Target Status
White Blood Count 9.59 4.4 – 11 Good
Red Blood Count 4.01 4.0 -5.2 Good
Hemoglobin 12.2 12 – 15 Good
Platelet Count 141 150 – 350 Almost
Neutrophil 3.16 1.5 – 8 Good
Potassium 4 3.5 – 5.1 Good
Creatinine 0.9 .5 – 1.2 Good
Magnesium 2.1 1.6 – 2.4 Good
Neighborhood Walk 2.1 mi 35 min Best Time Goal 2.4 mi 38 min MET (BMT Day 275)

What a year! Happy BMT birthday Kathy!  You are one Year Oldagain!  We had our one-year post Bone Marrow Transplant (BMT) work up this Wednesday morning with lots of things to do at Johns Hopkins… blood work (more extensive than usual), CT scan, 12-month immunizations i.e. four shots in the arm and an appointment with our oncologist. Everything went well, the CT scan did not show any abnormal lymph node development.  Part of the blood labs were to check if Kathy’s blood type has changed from AB- to A+. If it has, we can have additional kids without being concerned about the RH factor!  Ask me how many pills I take now…1! and that’s just a calcium tablet, nothing to do with my cancer treatment.  Although Kathy’s blood counts are not all in the normal range, they’re all at least very close. Our oncologist was very pleased with how Kathy is doing. At one point in our conversation she teased with us saying you need to get out of here I have sick patients to see! They were very proud that Kathy was able to complete the 100-mile bike ride one day after her one-year BMT anniversary. You could tell that they took great pride in Kathy’s good health.

We asked about the possibility of a six-month sailing cruise to the Bahamas, our doctor started to say not yet, but when we told her we would not plan on departing until December 2018 she was very optimistic we could make the cruise…and told us we could start planning! OK…Back to the sailboat “TO DO LIST”

So, what did Kathy do during her BMT birthday week… first, she finished training for and successfully completed the Six Pillars Century bike ride on Saturday, May 5 one day after her first BMT birthday. We were blessed with perfect weather for our ride, we averaged 14.9 mph which was a good time for us…and yes, this put Kathy back in the I AM TIRED column.
Second, she fell on her bike two days before the century, fortunately only got a bruised rib 😦 Third she had a colonoscopy on May 3rd two days before the bike ride (not very good planning on our part), and fourth, celebrated my first BMT birthday with my favorite meal (shrimp scampi) both Friday & Saturday nights courtesy of Phil and Rachel and of course had a one year birthday cake!

Well what can we say…in NASA lingo Kathy is nominal…in doctor’s lingo Kathy is unremarkable…in my lingo Kathy is doing GREAT. Praise the Lord!

It’s been a year of great challenges but also even greater blessings. A year ago, Kathy was unable to walk even 10 feet on her own, climb stairs or get up off the floor by herself. By God’s healing hand, your faithfulness and prayers, Kathy’s diligence, and Phil’s encouragement, she’s pretty much back to where she was prior to the bone marrow transplant. There are still a few physical challenges the main two being: first, fighting off the Large Grandeur Leukemia that is still in her system, but her body seems to be fighting and winning at this time, and second, she still stays very fatigued regardless of how much sleep she gets.  We are learning how to manage fatigue. God has been so good to us!

What’s next…our oncologist kind of sheepishly asked us if we would be OK with our next appointment being in two months, we said that would be great, so we are now on the two month plan (which is so much better than the 24-7 plan that we started on)  with our next appointment on July 9, 2018 (we can understand how some would not like to give up the perceived security of seeing your oncologist and knowing your blood counts more frequently but…you have to leave home sometime…We are 18 again and on our own!

Thank you for your prayers & support. You continue to play an important role in our healing journey.

Isaiah 43:1b-2 “Do not fear, for I have redeemed you; I have summoned you by name; you are mine. When you pass through the waters, I will be with you; and through the rivers, they shall not overwhelm you; when you walk through fire you shall not be burned, and the flame shall not consume you.” “Love never fails” … Blessings, Phil & Kathy

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Our Wonderful Oncologist
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Our Wonderful Oncologist
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Happy “First” Birthday Kathy!
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Good Bye Pills!
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20 Miles down…80 to go
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Our riding team at 60 miles
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Congratulations Kathy!

 

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If NASA says you’re Nominal,…your doctors say you’re Unremarkable…Then this is what you get to do!

 

BMT Day 347 – Two Down…One To Go…

Monday, April 16, 2018

  1. Pray that Kathy’s IgG level will continue to increase.
  2. Pray the LGL will be controlled and eliminated by Kathy’s immune system
  3. Praise that Kathy has plenty of energy!
Kathy’s blood counts on BMT Day 347 April 16, 2018
Blood Item Actual Target Status
White Blood Count 8.8 4.4 – 11 Good
Red Blood Count 3.98 4.0 -5.2 A touch Low
Hemoglobin 12.1 12 – 15 Good
Platelet Count 151 150 – 350 Good
Neutrophil 1.58 1.5 – 8 Good
Potassium 4.1 3.5 – 5.1 Good
Creatinine 0.8 .5 – 1.2 Good
Magnesium 2.1 1.6 – 2.4 Good
Neighborhood Walk 2.1 mi 36 min Best Time Goal 2.4 mi 38 min MET (BMT Day 275)

 

In doctor’s language Kathy had an “unremarkable” visit with her Oncologist. In NASA language her doctor’s visit was “Nominal”. Blood work looks good but stills signs of Large Granular Leukemia (LGL). Normally the white blood count (WBC) would be high with LGL but because her Lymphocytes were just a little high and her Neutrophils were lower than usual but still barley in the normal range the overall WBC is in the normal range.  We got the go ahead to ride the Six Pillars of Character Century (100 mile) Bike Ride scheduled for May 5th, 2018 one day after Kathy’s 1-year bone marrow transplant birthday on May 4, 2018.  We are both excited about the possibility of completing this ride and our Oncologist is very happy that Kathy is getting out and being active.  We have done several 30-mile rides without any issues and if the weather warms up will do some longer rides. Kathy was told that she could stop taking 2 of the 3 pills she is currently taking every day…so do the math…she now is only taking one pill twice a day and on May 4th she will stop taking that last pill, therefore on May 5th she will not be taking any cancer related pills!  And since our next appointment is not until May 9th she will make it at least 5 days without cancer related pills! Bye the way, if you want to catch fish yourself…LEAVE KATHY AT HOME!  The pictures below tell the whole story.  Kathy caught three large bass in less than an hour then stopped fishing to allow me to catch a scrawny bass that was not worth a picture, prior to going to Busch Gardens on Friday, April 13th.  May 4th is fast approaching and we will be celebrating Kathy’s 1st BMT birthday. We are humbled by how good God has been to us throughout the six years Kathy blood was being monitored, the 6 months of chemo treatments preparing for the BMT and the yearlong recovery from the BMT.  We also appreciate so much your prayers and encouragement over this long period of time.  While we don’t know what the future holds for us, we know God and you all will continue to be with us as we hopefully wrap up the last details of CLL.  The one thing we have learned and has been so clear on this journey is “Love Never Fails”!

Isaiah 43:1b-2 “Do not fear, for I have redeemed you; I have summoned you by name; you are mine. When you pass through the waters, I will be with you; and through the rivers, they shall not overwhelm you; when you walk through fire you shall not be burned, and the flame shall not consume you.” “Love never fails” … Blessings, Phil & Kathy

 

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Kathy…”Bass Fisherman” Dalby hauls in another nice bass!

 

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Don’t let that smile fool you…She’s not going to let you catch anything 

BMT Day 312 – The Journey Continues…

Monday, March 12, 2018

  1. Pray that Kathy’s IgG infusion will be effective.
  2. Pray the LGL will be controlled and eliminated by Kathy’s immune system
  3. Praise that Kathy has plenty of energy!

Had three appointments today at Johns Hopkins. Labs, Oncologist and an infusion of IgG. Labs were routine except they also checked for a virus in the blood.  If the virus is found in the blood then Kathy will need to make an appointment to Infectious Disease for treatment.  Praying that the virus will not be found.  Oncologist thinks it is unlikely that a virus will be found so that is encouraging. We will know in a couple of days. The antibiotic Kathy is taking has pretty much taken care of her sore throat and ears so she is left with a mild cough and pretty heavy congestion. They did find one virus in the nose swab they took last Thursday but the antibiotic Kathy is taking should take care of that. Assuming there are no viruses found in the blood Kathy will have one more infusion on April 11th and then her IgG level will be monitored until it is normal. Good news in all of this is we were told to stay active and we can travel etc. between appointments.  I reminded our Oncologist that we had signed up for the 24/7/365 treatment plan so we need to be finished by May 4, 2018…once again no comment by our Oncologist…or maybe that is when she started laughing! Next update after our April 11th appointment, unless we wind up having an appointment with Internal Medicine. Another blessing is despite the cold symptoms Kathy is experiencing she has plenty of energy and continues reduce the time on her daily walk and has started riding 8 miles a day on a stationary bike at our local YMCA.  She is a trooper of the first degree!  Thank you for your prayers!

Isaiah 43:1b-2 “Do not fear, for I have redeemed you; I have summoned you by name; you are mine. When you pass through the waters, I will be with you; and through the rivers, they shall not overwhelm you; when you walk through fire you shall not be burned, and the flame shall not consume you.” “Love never fails” … Blessings, Phil & Kathy

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Fill’er up with IgG Please!!!

BMT Day 308 – I made it…

Thursday, March 8, 2018

  1. Pray that Kathy’s infusion of IgG will allow her body to cure the bronchitis, cold and flu symptoms she has experienced during the past two months.
  2. Pray the LGL will be controlled and eliminated by Kathy’s immune system
  3. Praise that we had a safe and wonderful vacation to Florida.
  4. Praise that Kathy had plenty of energy to enjoy Florida and all the activities we engaged in despite nagging cold and flu symptoms.
Kathy’s blood counts on BMT Day 308 March 8, 2018
Blood Item Actual Target Status
White Blood Count 11.19 4.4 – 11 High From LGL
Red Blood Count 4.33 4.0 -5.2 Good
Hemoglobin 12.4 12 – 15 Good
Platelet Count 233 150 – 350 Good
Neutrophil 4.02 1.5 – 8 Good
Potassium 3.7 3.5 – 5.1 Good
Creatinine 0.9 .5 – 1.2 Good
Magnesium 2.1 1.6 – 2.4 Good
Neighborhood Walk 2.1 mi 39 min Goal 2.4 mi 38 min MET (BMT Day 275)

YEAH! I made a month-long trip to Florida without any transplant or unique cancer symptoms. I did continue to have my cough and congestion that I’ve had since 1 January. I did have to have one blood draw during our trip and we had that done on MacDill Air Force Base. Fortunately, my blood levels were good.  I was also able to refill some medicine I could not refill off Base because it is a controlled substance and Florida requires prescriptions for controlled substances to be completed on tamperproof paper and my prescription was written on regular old Johns Hopkins paper.  I was blessed to have enough energy to fully enjoy our vacation. We visited good friends in Orlando, Vero Beach and in the Village of North Palm Beach. We enjoyed four days of biking in the Everglades where we saw plenty of alligators and other Florida wildlife. We also attended a great tour of the Nike Missile Site located in the Everglades. It was put in place after the Cuban Missile Crisis and was manned during a good portion of the Cold War. Of course, we visited Mickey, along with Busch Gardens, Tampa and Sea World. It was a wonderful trip and break from the cold weather and doctors! Since I seemed to be able to easily ride 20 miles on the bike and had pretty good energy throughout the day we signed up for the Six Pillars of Character Century (100 mile) Bike Ride scheduled for May 5, 2018. My Bone Marrow Transplant was done on May 4, 2017 so we thought this would be a great way to celebrate my 1st birthday!

As we headed north and the temperature got into the 40s I started having a sore throat and ear ache. Welcome back into the real world…and on top of that we got home Tuesday afternoon and it snowed Tuesday night.

I had my first post vacation oncology appointment this morning, but before my oncology appointment I had a brain MRI at 7am, just a monitoring thing, Phil verified they did find a brain. They asked if I’d be having blood drawn today, because they’d leave the IV line in to save me a prick. I was actually going to ask that question, but they beat me to it! When I said it was oncology they said oncology probably wouldn’t use it, but I decided to take a chance…they were correct, however Paulette, my favorite for blood draws, got it the first time as did the MRI nurse. We saw my Nurse Practitioner, blood numbers looked good, but she decided I needed a nose swab and put in some more blood tests due to my prolonged cold and flu symptoms. I’ve had these symptoms since the first of January. She also had additional blood work put in to check my IgG level. Back to Paulette and a third blood draw with only one prick, what a blessing! If my IgG is low, it is difficult for my body to fight off the cold symptoms etc. If It turns out the level is low, I’ll need to come to Hopkins to have an IgG infusion sometime next week. My next regular appointment is not until April 11, 2018, so I have graduated to monthly appointments!  Our hearts always go out to those in the waiting room that look tired and weak from treatments, praying that they will recover like I have been able to. Hopefully I will be able to shake this cold in the next couple of weeks and I’ll get a few more symptom free days.  Thank you so much for your prayers, they have been such an encouragement to us! Until April 11th…

NEWS FLASH…since we delayed in sending this update, we got the results back for the IgG level.  Kathy’s IgG level was very low…33 mg/dL..standard range is from 751-1560 mg/dL. We have an appointment Monday March 12th at Johns Hopkins to get an infusion of IgG for Kathy. Just for interest sake, in our research we found the following infections that most often affect people with IgG deficiency: Sinus and other respiratory infections, ear infections, pneumonia, bronchitis, and infections that result in sore throat. Now we know why Kathy has been unable to get rid of the bronchitis and cold and flu symptoms that she has been plagued with since December 30th.

CONCLUSION…Kathy didn’t make it… since we have to go to the hospital to get this infusion!  Guess we will have to schedule another month-long Florida trip before it gets too warm here so Kathy can prove herself!

Isaiah 43:1b-2 “Do not fear, for I have redeemed you; I have summoned you by name; you are mine. When you pass through the waters, I will be with you; and through the rivers, they shall not overwhelm you; when you walk through fire you shall not be burned, and the flame shall not consume you.” “Love never fails” … Blessings, Phil & Kathy

 

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A Blue Heron, one of the many beautiful birds we saw 
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Kathy on the Snake Bight Trail 
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Nike Missile Site
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Beautiful birds
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The car did not stop for the alligator…but the alligator stopped the car
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Where’s my lunch
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Kathy making friends
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Kathy and Heidi with our traditional smoked turkey leg
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Relaxing with David and Harriet
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Kathy and an alligator…Kathy’s on the left
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This is MY spot!
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Kathy and Phil on Snake Valley tower…Everglades in the background
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Yes Killer Whales kiss!
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Kathy with her two singing buddies
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Disney Springs…Have a Coke
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Nothing better than a Mocha Java Chocolate Chip Grande Frappuccino when you need a bit more energy!

 

 

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May the Force be with you
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Met Greg and Lyn at Vero Beach…they left for the Bahamas the next day
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Shamu
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We can jump too!

 

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Watching an Atlas 5 rocket launch at Cape Canaveral on March 1st.
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Riding bikes in Lake Nona