Month: March 2017

We had a beautiful day filled with sunshine and joyful beginnings!  Today Josh was discharged from the hospital! His counts were at 570 so they let him go this evening!  Josh got to sleep in his bed and hopefully will get much better-uninterrupted sleep.  The kids were so excited to see Josh! Nathan’s expression when he saw Daddy at the door was too cute–for a moment it looked like he couldn’t believe his eyes, then he jumped out of his chair and ran to him.  Noah walked home a bit later from helping friends with some yard work so he had to clean up before greeting Daddy, but he had a big smile on his face.  We are so happy to have Josh back with us! Yet, we are also cautious about the possible risks of infections and such.  Please pray our family would learn new routines and precautions quickly, and for continued recovery for Josh without too many infections or GVHD.

This morning two kind and lovely ladies from Clackamas Bible Church came prepared to give the house a good Spring cleaning.  They helped me vacuum, mop, scrub and clean all the windows to get all the accumulated dirt and a little bit of mold off.  Katelynn took Nathan out to the park while we cleaned and used all kinds of chemicals in the house. Noah wanted to help as soon as he finished his school work, but by the time he finished, we had done most of it.  I was so blessed with extra hands! Katelynn helped so much throughout the day.  She must have done dishes for at least an hour straight while I cleaned out the fridge and disinfected our kitchen appliances.

Meanwhile, we worked hard at home, Josh was anxiously waiting to come home.  I finally managed to run out to get him around four o clock.  The pharmacist was waiting for me in order to explain all the different medication regime: when to take them, the dosage, and what possible symptoms to look for.  It wasn’t as bad as we were expecting; though I may be preemptively speaking.  One particular medication (the one that prevents GVHD) will continually change in terms of dosage according to Josh’s need.  Others may be dropped or added later on.  They gave us a ginormous weekly pill box which we filled, and it still looks half empty.  They also gave us a nice chart with the medication list and times broken down into four-time intervals.

Photo taken at the family lounge in the unit. The cancer track is one Josh made prior to his admission and left for others to find. The Bibles were left by the Gidieon’s group.

To our pleasant surprise, Josh’s neutrophils count (a type of white blood cells) were at 350 today! They discharge patients when their levels reach 500 or above.  His are expected to hit the 500 level soon–as early as tomorrow! This means that Josh will likely be discharged from the hospital this weekend!  We are thankful to God for the prospect of having Josh home earlier than anticipated! The kids are stoked to see Daddy soon!  At the same time, his new full-time nurse (that would be me) is very busy with all the preparations.  One of the nurses named Kris kindly took her time teaching me some of the ropes.  She brought out a manikin doll and had me clean its dressing.  Then, I ended up cleaning Josh’s dressing with her. After the hospital, I went shopping late tonight for some things we needed for Josh and realized I missed a handful of other items.  By God’s grace, some dear ladies from Clackamas Bible Church are coming over in the morning to help me clean-up/disinfect the house! Please pray for a smooth transition.

Josh still has a nasal cold; however, his doctor said it’s very mild.  Thus, it’s not too much of a concern.  It’s mostly only a discomfort to him and it will just take time to heal.  Meanwhile, at home, Katelynn noticed that Nathan has a back tooth coming out, which could explain why he’s been so fussy lately.  He doesn’t seem to have any other cold-like symptoms other than a runny nose and that’s been getting better.  We’ve been keeping him away from the nursery and not getting too close to other kids that may be sick.  It’s definitely a sacrifice, but kids catch bugs so easily from others.  Almost everything right now is a temporary sacrifice, in order to enjoy a long-term benefit much like the Christian life.  “He who has found his life will lose it, and he who has lost his life for My sake will find it.” Matthew 10:39

Today Josh felt a bit worse than yesterday and still had the same cold.  They started giving him shots in his tummy that helps produce white blood cells in his body.  Once his body produces white blood cells, his body will first use them up to fight off his cold.  Lord willing, in a few more days his white blood counts will eventually go up and he can be released from the hospital.  As his white blood count goes up, so does his immunity.  While this is a good thing, it also means that he will be at higher risk for GVHD since his body may likely want to fight off his new foreign bone marrow cells.

We had a nice long conversation with Josh’s nurse.  He is a bright guy and very humorous.  We enjoyed debating our faith in the One true God revealed in the Bible–among other things: the principle of right and wrong and the binary nature of our belief, and whether or not the heart of a man is inherently good.  Josh and I went into some apologetic’s with him.  By the time I walked into Josh’s room for the day he had already been talking for about 20 minutes and we all went back and forth for at least 20 minutes longer after that. It was a friendly and peaceful debate that was spontaneously started while Fred was on his way out of Josh’s room.  That’s the most ironic thing to me because he stood by the door literally about to exit the room… for 40 minutes!

It goes to show how ready we must be anytime to give a defense for the hope that is in us.  Please continue to pray not only for Josh and the other patients here but for the wonderful staff here as well.  While it can be discouraging when people we care about don’t embrace the life-giving truth. I was reminded what a relief it is to know that regeneration is not up to us.  Psalm 139 brings me comfort in knowing that even before a word is on my month, God knew it.  During trials like this, I am so thankful for a solid foundation of knowing God is sovereign over even these small details in our life as well as the big events like how many days we live on this earth.  Yet, it is still a challenge every day to put that knowledge into practice by living out my faith and love for my Lord without fear or reservations.  I too say, “Lord, I believe, help my unbelief!”

Since Josh has been isolated in his room now, he hasn’t really been able to see anyone else on the unit other than the staff that comes into his room plus me.  However, a volunteer art teacher was able to bring some canvas cards and color pencils.  Josh made a fun uplifting card for the boys.  His nurse said that Josh is likely to have this cold for another week and by then it may be time to discharge him.  This means: (1) He may be discharged soon! (2) He may be stuck in his room for the next week =/ Despite this, Josh is still thankful.  He said he is so glad to have been moved to the room where he is.  It’s much more spacious and has a beautiful view overlooking the Willamette River and the city of Portland, OR.  Nonetheless, we can pray that Josh would recover from this cold quicker than the medical staff anticipates! Ultimately though, we want whatever it takes to have Josh live many more years with us.

Today was a rough day.  Josh found out he has a nasal cold. Yesterday he felt flu-like symptoms and they took a nasal swab sample to see if he had the flu.  The good news is he doesn’t have the flu, but the bad news is he has a cold.  Josh has been feeling ill but not too bad.  He rested all morning.  Later when he was tired of laying in bed and felt up it, we watched a movie.  He also got to do some short exercises in his room that the physical therapist had recommended.  Then, we listened to The Briefing podcast together with Al Mohler, which we would recommend to all our friends as a good Christian news source.  Josh wasn’t allowed to walk the unit or leave his room since he has a cold.  In addition, they had me wear a gown, gloves and mask the entire time while in the room with him. We are thankful to be in a facility that takes these precautions seriously.  At the same time, he really misses everyone, especially the kids.  He can’t wait to get home. However, he really isn’t feeling up for much visiting.  He kindly asks that no one visit him while he is sick.  On the bright side, he’s been having a great appetite and ate not only one full dinner but a second dinner as well tonight! Please pray for Josh to fight off this cold bug with good rest, sleep and nutrition.  Then he’ll be able to go back out on the floors of the unit and be a light to others around him.

At home, Nathan continues to struggle with a cold too.  Yet, no one else has caught the bug.  Prayers for overall physical health for our entire family (which includes Nanny Katelynn) during this rainy/cold season are much appreciated.  Another thing, please specifically lift up the boys in your prayers–for spiritual protection and emotional well-being too.  The boys got to see Daddy over Face-time again tonight.  It’s a special time for our family to connect.  Josh is trying to tell them a fun Bible story over the phone every night before they go to bed.  He is sleeping better now.  Although, the boys have been fighting their sleep nearly every night.

Thank you all for keeping up with our little family by reading our blog, and for lifting us up before the throne of God in prayer! It means so much to us!  We are trying to take it day by day, but we Hope and anticipate the day when things return to a more normal state… We are told life after transplant will never be the same.  For one thing, I think we will grow to appreciate the ordinary things of life more.

We had the delight of having our dear friends Dwight & Elaine from our church in Merlin visit this morning.  They had a nice visit with Josh and brought a big smile to his face!  Afterward, Katelynn and the boys met us by the tram station to wave to Daddy again! Nathan had been talking about wanting to do it again.  He was so excited to see Daddy through his room window, and almost equally as excited to ride the tram again! We all took the scenic sky tram down to a burger place called Little Big Burger where we got these little half-size burgers with a fat patty and an extra helping of fries.  Nathan loved it and devoured every last bite.  Noah, on the other hand, was disappointed.   Something we are all trying to learn is to be thankful even during the disappointments in life… God always truly gives us so much through his grace and mercy.  Sometimes we just don’t count our blessings in life and we miss out on seeing his love and goodness.

One immense blessing for Josh today was to be able to do a Bible study with Zach on John 3 and the new birth.  Zach genuinely wanted to study the Bible with him and it really encouraged Josh to be able to minister to someone in such need.  Zach’s cancer is much more advanced and he may not make it.  They aren’t sure there’s anything they can do for him.  Yet, he can still experience full healing and life eternal no matter what the outcome in this short life.  Josh thinks Zach is in a good place spiritual now.  Please continue to pray for him.  He is supposed to get discharged tomorrow.

Another blessing was that Josh’s doctor told Josh this morning that his numbers are already starting to rise a little!  They went from zero and below to one! This is earlier than expected, which is good! However, along with his numbers picking up comes the risks for Graft Vs. Host Disease (GVHD).  Please pray to God, our creator, to sovereignty direct all of this happening in his body to give Josh full and complete healing. Regardless of what may come our way next, pray for us to all rest in his infinite wisdom and perfect will.

Today Josh got his last dose of a drug that prevents graft vs. host–its a low dose type of chemo.  He doesn’t usually have a problem with this one.  He has been reacting to the white blood cell infusions though.  He had a rash on his body, so they decided not to give him any white cells today.  He tends to have allergic reactions. In the past, they have given him Benadryl for it.  We are still waiting and praying for his bone marrow cells to en-graft well.  As far as energy is concerned, Josh is doing very well. He walked another two miles. He says his goal is to walk one before I arrive; then walk another one together.

Katelynn, the boys and I had the privilege to have lunch after church with some dear saints from our new church at a delicious Vietnamese restaurant.  We enjoyed getting to know them better.  Thank you, Gordon and Bonnie, for your kindness to our family and faithful prayers! Thank you Clackamas Bible Church for your prayers and support! Katelynn is doing a wonderful job with the kids.  Noah is doing very well and will get to visit with Josh tomorrow.  Nathan is still sick with a little cold and has been fussy.  Please keep them all in your prayers.

When I got to the hospital after lunch Josh was already napping, so I waited for him in the lounge.  As I was surfing the net, one of the other patients, a 30-year old man named Zach came in.  I  had seen a few times before, usually accompanied by an escort worker from the hospital and talking about wanting to go smoke a cigarette. The patients on the unit are strongly discouraged from smoking since it causes cancer, plus it’s an indoor unit with strict isolation precautions.  In the two weeks that Josh has been, they’ve only allowed him to go onto another floor once and that was to receive radiation.  Zach remarked how he usually sees me on the treadmill.  I told him I wasn’t on the treadmill because I was wearing heels since I had come directly from church. He commented that he wishes he could go to church.  I told him my husband was a pastor and could visit him if he’d like.  He said he would really like that and for him to pray for him.   Then, he invited his escort Rachel and I to play a game of bowling with him on the Wii Fit in the lounge.  We both agreed and had a great time playing.  They both beat me, but it was still a joy to see Zach have fun.  It was an even greater joy to see Zach receive the healing balm of the gospel later when Josh joined us.  Josh got the pray for him, then he asked for prayer for his mother and brothers that are grieving him. So Josh prayed some more…  Then Zach wanted to pray for Josh!  His prayer was one of humbleness and it brought a tear to our eyes.  He acknowledges that he had fallen away from walking with the Lord and wanted to be restored.  Please keep Zach in your prayers!

Josh is making friends, blessing others including myself with his sense of humor & love; and time is just flying by day by day…  This is such an answer to prayer as he was in agony when time seemed to tick slowly every hour.  We got to finish the rest of the movie Inn of the 6th Happiness–it was a great picture for the time period in which it was filmed, even though I learned it didn’t reflect the true story as accurately as it could have.  Nonetheless, it was an inspiring story of faith through Christ and courage despite amazing difficulties and suffering.

The day flew by so fast for all of us, including Josh! He is getting accustomed to living at the hospital.  He doesn’t necessarily have a routine since things are always in consonant flux. However, he is learning to cope with his symptoms, discomfort and new environment pretty well.  Josh has also been feeling better lately. He walked more than two miles today! Woohoo! Praise God! Plus, it’s been great sharing laughs with him now that he has his sense of humor back! We even got to enjoy watching part of a movie together this afternoon on his iPad–Inn of the 6th Happiness. It’s an old movie about a missionary in China based on the story of Gladys Aylward, who during wartime determinedly loved and helped those who were hurting and orphans who were so vastly different than her.   I can’t wait to return to see Josh and finish the movie by his side tomorrow!

We talked to Josh’s transplant doctor and she told us he is doing very well.  He is expected to lose at least some of his hair soon, from the chemo.  I asked her what we should expect as far as having effects of graft vs. host issues of incompatibility, and she said he would be getting some in the next few days.  She told us usually people don’t have graft vs. host quite this early on because his new cells still haven’t really grown yet. Therefore, Josh needs prayers in the upcoming days for his body and the donor’s bone marrow cells to duke it out safely.  They tell us they want some graft vs. host to take place to kill off any remaining “bad” cells that weren’t eradicated with the chemo, yet not too much where it damages his organs.  Since Josh has Fanconi Anemia (FA) he doesn’t tolerate chemo so they had to give him very little chemo and radiation.  They are hoping to control the graft vs. host in order to essentially cure him and not let it kill him at the same time.  We know that God is all-powerful and able to cure Josh despite all of the danger humanly speaking and that he can use the doctors to accomplish this if He wills.  Josh says he is encouraged to persevere by thinking of our family and all that he wants to do in the future with the church and missions for the Lord.  Please pray for Josh to endure faithfully.  Also, prayers requested for Noah, Nathan, Katelynn and I–that we will all not grow faint nor despair, but grow in our Hope according to Romans 5.  Thank you to everyone who has come alongside us!

“Therefore, since we have been justified by faith, we have peace with God through our Lord Jesus Christ. Through him, we have also obtained access by faith into this grace in which we stand, and we rejoice in hope of the glory of God. Not only that, but we rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope, and hope does not put us to shame, because God’s love has been poured into our hearts through the Holy Spirit who has been given to us.

For while we were still weak, at the right time Christ died for the ungodly. For one will scarcely die for a righteous person—though perhaps for a good person one would dare even to die— but God shows his love for us in that while we were still sinners, Christ died for us. Since, therefore, we have now been justified by his blood, much more shall we be saved by him from the wrath of God. For if while we were enemies we were reconciled to God by the death of his Son, much more, now that we are reconciled, shall we be saved by his life. More than that, we also rejoice in God through our Lord Jesus Christ, through whom we have now received reconciliation.”

Romans 5:1-11

Today marks two weeks since Josh was admitted into the hospital! He is encouraged to know he’s at the halfway mark! Although, it could even be sooner if Josh improves quickly and gains at least some degree of his immune system. He is still doing fairly well! He accomplished two miles of walking, a shower and some meals today. A massage therapist came today and asked how Josh was doing, and he couldn’t believe it had already been a week since she last came!  We had asked for massage therapy as a more natural way to relieve pain and for relaxation back when Josh was in overwhelming pain. Thankfully, his pain level has dramatically decreased; yet he still has headaches, fatigue, and discomfort. It’s so nice that OHSU offers massage therapy for their patients. They even do deep tissue massage; only Josh’s body is too sensitive for that right now. The therapist is a sweet Irish woman in her 50’s and it was fun getting to know her and some of the history of Ireland from a native’s perspective. Sadly, political injustice has tainted her view of the Protestant church.

We also got to see Dr. Dao today, who was the first voice we heard from OHSU back in November when they were trying to get Josh in the door.  His hematologist suspected he had FA and the urgency in which he needed to be seen. However, at that time we didn’t have insurance covering any of his medical bills since his condition was considered pre-existing with the Christian sharing network we had.  We had already received a $12,000 bill for simply one bone marrow aspiration and the myriads of test they ran on it.  Plus, Josh felt fine and they suggested hospitalizing him at that time only to run inpatient tests and try to apply for emergency financial assistance after we got the hospital bill, so we prayerful and politely declined.  The social worker and doctor team got on top of things to try to get some financial aid to help Josh be seen by Dr. Dao, and later helped us figure out how to get insurance that would cover the bone marrow transplant she had recommended ASAP! We’ve had the opportunity to meet the social worker behind the scenes that also helped get Josh to the hospital and she is a believer! It’s amazing to see God’s hand over all of this every step of the way! He has provided above and beyond, and still doesn’t cease to amaze us with his love and provision.

The kids and Katelynn had much fun at the Children’s museum with Doug and Linda. They are wonderful with kids and their love for the Lord shows in their kindness to our family! Thank you Doug and thank you Linda! Katelynn is so creative she made an impressive birdhouse out of craft materials like CD cases and scraps at the museum and plans to set it outside by our kitchen window.  We are looking forward to Springtime here in Portland!  We can’t wait till the flowers and roses fully bloom! Even more so, we can’t wait till Josh is able to bloom and get outside of those hospital walls and join our family again.  Even though he will remain in isolation for a time at our temporary home here, it will be good to get him out and enjoy God’s creation with all five of his senses. This city is beautiful even with all the rain and gray clouds.  We got to see a beautiful rainbow in the skies today that reminds us of God’s mercy and faithfulness.  Pray for Portland… it is surrounded by God’s beauty and yet there are so many broken people who so desperately need him.

The Lord continues to amaze me of little faith. He is able to move mountains and has the power to invigorate with life as he wills.  Today God renewed Josh’s strength so that he was soaring like an eagle! In the morning he said he felt the best he’s ever felt during his extended stay here at OHSU Inn, even before he came into the hospital! He described it as a surge of energy that was almost like he was on a high.  He walked about a mile and a half and got to share the gospel with a fellow BMT patient who had his transplant the same day as Josh. I had the privilege of coming alongside my beloved old man’s side for some of his walks and hearing him give a broken man the hope of the eternal life in Christ.  We give credit to God for this awesome answer to prayer! For the first time yet, Josh also had a good nights sleep without any nightmares. In fact, his dreams were actually pleasant! Some people around the unit and some of the nurses had warned us that around Day +5 thru Day +10 Josh may hit rock bottom.  Today Josh’s nurse told us he doesn’t necessarily have to hit rock bottom; especially considering he’s already hit a low early on.  Thus, we are hopeful that the worst is behind us now.

At about noon, our new friend Doug came to visit Josh once more, and before that, the chaplain had come in to encourage him and vice-versa.  Josh really got a kick out of having him read Scripture in Hebrew, as well as asking him some pretty intellectual questions on the Greek language and textual criticism.  By about 1:30p.m. Josh was wiped and took a long nap to try to recoup! He never did quite regain as much energy as he had in the A.M.; however, he still did much better than before.  Even though visits and exercise are draining for Josh, they also are what keeps him going!

Back at home, Katelynn found a rock painting group in the area and took the boys to a local park on a hunt for painted rocks. Later, they did some paint shopping in order to disguise their own rocks and hide them for other kids to find. They were thrilled! These little things make such big difference! Tomorrow, our friends Doug and Linda are taking the boys and Katelynn to a children’s museum!  We’ve been so blessed to gain eternal friends like the these through this momentary affliction.  Also, our sweet new neighbor Maureen from across the duplex brought us a delicious meal this evening! Thank you, Maureen!  It was so nice to not have to rush home from the hospital and cook dinner.  We thank the Lord for his abundant love and goodness to our family!

Time is starting to feel like its passing more quickly now for Josh during the day.  He had a visitor this morning from Clackamas Bible Church here in Portland.  Pastor Ken came in to see Josh at the same time that I arrived at the hospital.  As I was explaining to Pastor Ken how to gown up and get masked in order to enter Josh’s room, his nurse told us he was up and walking around doing laps already at 11a.m!  The two comrads enjoyed a long and stimulating conversation on pastoral ministry and such.  Josh was really engaged and alert the whole time. It wasn’t till the very end, that he finally told us he was ready for a nap.

One of my favorite things to do at the hospital has been walking.  I delight in walking with Josh and in encouraging him to do as many laps as he can without overdoing it.   We sometimes get to walk with friends visiting and other times we get to meet new people on the unit. I’ve been running into a nice lady named Janet and getting to know her. Today, Josh and I both got to talk and pray for her and her husband Phil who just had a transplant done too. We sat to rest in the lounge area together and talked for quite some time, then each of us went back to walking our laps and passing each other in the hallway.  On and off Josh walked a total of 14 laps today, which is over a mile!  He definitely had more energy today!  Yet, he’s also getting in some food and rest.  Nights continue to be a struggles Josh needs continued prayer over,but he says they are getting better.

During the times that Josh naps, I also enjoy walking on the thread-mill and listening to music in the family lounge that has an amazing view of the city.  It’s a little way I try to take care of my own body so I can care for Josh and the boys.  Katelynn has been an enormous help already!! I can’t believe all she does for an 18-year old young woman! I think she is going to be an amazing wife and mother one day. Nathan keeps calling her his “Annie” instead of nanny–it’s too cute!  My prayer for her is for God to help her maintain stamina, have fun with the kids and make friends her age, as well as for Him to grow and bless her well above her years.

We appreciate all the messages, cards, gifts, love and prayers from all our dear friends!  It makes such a difference to walk this difficult journey with others.  Thank you for sharing the load of this trial and lifting some of the weight off our shoulders! God bless!