Day +43

IMG_0024Caption1: Don and the boys with a Katelynn eating a picnic Chick-Fil-A lunch on our yard.

Caption 2: Don napping in the back of Josh’s room and Noah spending time with Papa.

Josh has been moving very much today while in the ICU.  It was alarming to me to come this morning at 6AM and find that Josh had yanked his feeding tube off of his nose.  All day today he has not been calm and he’s needed more sedation; he also has not been able to open his eyes or respond to us.  When Josh’s doctor came in to talk to us, they took his sedation down somewhat, but Josh still was not able to wake up and respond.  He was restless and very uncomfortable.  The doctor did not have any decisions for him to make yet so we decided to spare Josh and turn back up his sedatives.  I’m worried that this ICU experience will give Josh traumatic memories. Of course, the priority is to save his life but please pray Josh would not have trauma, but that he’d hardly remember anything. Please pray that God would protect his mind and give him peaceful dream or to none at all.  The plan for now is to try and get the tube out tomorrow if his swelling does not get worst, which the doctor doesn’t think it should. Then by Tuesday, we should find out whether or not we will have the t-cells and when we can get them.  we hope to know if we have to wait for the t-cells to start a very mild chemo that Dr. Newel got consensus from FA doctors all over the country as the next best thing! Please pray for a successful treatment of his PTLD or lymphoma.

The hardest thing for us as a family has been watching Josh suffer as he is.  Noah was brave to come to see him yesterday, but he doesn’t want to see him like this again.  He asks about when he will be out and home with us.  That is our longing… is to see Josh back home with us soon! I’ve tried playing the audio Bible in Josh’s room to help comfort him.  I’m not sure if he can hear it, but if anything, it has helped minister to us and hopefully others around here in the ICU.  Josh’s dad Don has been sharing with the staff the many ways God has answered our prayers throughout this trial.  It’s a good reminder to me too! Thank you, Don, for being here for Josh, the kids, to help Katelynn and to be there with me!  Don took Noah to stay with him at his hotel and they got to go to the spa, the heated pool and have breakfast there. Nathan has also enjoyed time with Papa while they miss dad being home.  God is teaching us that we must set our eyes on God’s love, sovereignty and all that he has done in the past. Also, all that he’s doing now even though the dark days, we see glorious blessings.  I’m so thankful for all the help Katelynn is to us at home so I can be at the bedside with Josh. It’s easy to be anxious about the many things that are given to Josh at the hospital, but ultimately we need to do our best to be informed and then, trust God with the rest.  Please pray Josh and the family would rest in Christ, who gives us the privilege to be children of God.  It’s easy to think God has forgotten us, yet he cares about our fears, tears, and suffering.

Day +42

IMG_0014Caption: moving Josh to a chair to get his body moving.

Josh was getting a pretty restless and anxious to get the breathing tube out! Especially when they completely turned off his sedative drugs since he could feel everything.  It’s very uncomfortable to the point of being painful.  It didn’t help that he got lots of steroids too; they make people anxious.  On top of that, they told him they were about to take the tubes out, a couple of minutes before the doctor walked in to explain they would have to wait longer.  He had his hopes up.  On the bright side, Josh was very alert and cognitive even coming out of sedatives!  The doctors had to bring him up to speed on whats going on, but it’s normal to have amnesia brain at first.  So basically, Josh is breathing on his own. He technically doesn’t need a breathing tube because he’s breathing fine, which makes it so tempting to get it off.  Noah wanted to visit Josh and he got to come with Papa today.  It was hard for him to see Daddy like this though.  Josh got to be awake while he came so that was special.  Please keep praying for the kids!

It’s an answer to prayer that they were able to explain Josh’s options with him and I both.  Even though Josh shed a tear and was not happy about it, he agreed to stay on the breathing tube in order to pursue more possible treatment.  Josh is being a champ and fighting for his life! At this point it means doing some of what they’re doing already with the steroids and this drug that tries to kill the EBV, but adding more… They are getting another dose of the Rituximab tonight and waiting to see if we can get some T-cells that are ready to go ASAP.  The Rituximab could make his neck swollen so it was important for that reason to leave it in there.  While we wait for the T-cells we may need to do an adjusted dose of another chemotherapy drug just to keep him going long enough to get those T-cells and hopefully start that therapy as soon as possible.  The chemo may make his swelling go back up too so that’s another reason they may keep the breathing tube in longer.   While this is difficult I’m so thankful for all the people God has provided.  I’m thankful for FARF!!! Also, I’m so thankful for Dr. Laura Newel doing work on her off days and doing much research and calling several doctors that specialize in FA! Thank you Dr. Laura!

Prayer requests:

  • for them to find t-cells quickly to treat Josh with
  • for Josh to tolerate the Rituximad
  • if needed, for him to tolerate the chemo
  • for his comfort and peace while on the breathing tube
  • for our whole family to be comforted during this time
  • continued direction and wisdom for the doctors and medical team

We appreciate your concern, prayer, love, and support! Many of you have been praying fervently, delivered meals, written cards or messages, or donated to our fund.  WE THANK YOU SO MUCH!!

Day +41

IMG_0009Josh showed some improvement today.  His swelling went down somewhat and he’s breathing on his own mostly.  They have the tube still in place because he’s at risk for his airway closing.  They did an ultrasound on him today.

We got word back on the preliminary results to confirm Josh has PTLD or a form of limp node cancer, and it is likely an aggressive one.  It has affected not only his throat but also in his armpits, his stomach and possibly his brain.  Dr. Laura Newell will come in to talk to us about our options in the morning.  She has been very diligent to do research on the different drugs and their toxicity risk on FA patients.  She even called one of the best doctors in FA in Minnesota and will reach out to another one.  Please pray for us to have wisdom in all the decisions and that we’d all (including the doctors) be well informed.  We want Josh to be a part of the decision making process.  However, having a breathing tube down his throat makes it so he cannot talk.

I asked God if they could just be able to take that breathing tube out ASAP; if the swelling in his throat would go down, they could remove it! It’s almost unbearable for him.  It’s hard for him to communicate with us and that’s frustrating to him.  His hands are restrained so he won’t yank the breathing tube out.  He can’t eat or drink… today he signaled that he was hungry and thirsty.  All the nurse could do was to clean his mouth to try to provide relief for his dry mouth.  It reminded me of the suffering Jesus went through on the cross when he was thirsty and they finally gave him wine mixed with gall to drink.   I did tell Josh that he reminds me of Christ and what Christ did for us on the cross. Pray for him to be comforted and ministered by the Holy Spirit.  Please pray for him to be alert when we talk to the doctor, and for all of us to have discernment and wisdom as to how to proceed.

Day +40

IMG_0006Today has not brought relief as we were hoping it would.  Josh got his first dose of the Retuximab last night and it did not seem to have improved things.  The good news is that they are pretty sure he doesn’t have a bacterial infection, even from the surgery.  The bad news is that his swelling got worst and started closing his airway passage.  They aren’t sure why the Retuximab did not provide any relief.  The medical team decided to move Josh to the ICU because of the danger of his airway completely closing.  They wanted to play it safe and keep a better eye on him at the ICU where he will have a nurse almost one-to-one.  They also decided to put a breathing tube preemptively, because it would be better to do it now than if his airway closed any further.

The past 3-4 days Josh has had CAT scans and PET scans and surgery so he has been restricted from eating and drinking.  Now, with the breathing tube he can’t eat at all; therefore, they also put in a feeding tube.  He’s got all kinds of devices and it is extremely uncomfortable, so they are sedating him somewhat.  He wakes up every now and then but he can’t talk with the tubes in his mouth.  He is pretty good at communicating through hand gestures though.  When they were taking him to have the CAT scan he signaled with two hands together.  Since they were pointed down, I thought he had to go to the bathroom and he kept nodding his head as to say no.  One of the nurses had understood this signal earlier but had left the room.  They went to find that nurse to ask her what the signal meant and she said, “pray.”  Bless Josh’s heart! I got to pray aloud for Josh before he went to have his CAT scan done.

The different medical teams are trying to put their brains together to try to make sense out of what’s going on.  They highly suspect it to be PTLD as a result of the Epstein Barr Virus (EBV) that they’ve confirmed has been increasing in his body.  If it is PTLD, they are saying it’s very aggressive and his FA makes it difficult to treat with chemo.  While, they still are not positive it’s PTLD, they are pushing to get an answer tomorrow afternoon the latest from pathology since they aren’t open over the weekend and it’s an urgent need. They continue to run all kids of tests to try to determine what the root cause is.  It may have to do with Josh’s genetic disease called Fanconi Anemia (FA) which caused his MDS in the first place.  FA increases the likelihood of cancers and tumors, and PTLD would be like a form of cancer.  At times it’s difficult because not all doctors, like the ICU team, know a whole lot about FA.  I am thankful that the Dr. that specializes in FA is overseeing all of it.  Moreover, I’m thankful that God is overseeing all of this!  It comforts me to know that God is the Great Physician and he knows all things! In his book were written all Josh’s days, before there was even one.  The social worker came to talk to me and walk me through the process of moving Josh to the ICU.  In God’s kindness, she is also a believer and has been praying for us.  I was able to cry with her away from Josh so that he wouldn’t worry about me.  It’s still so so hard to watch Josh go through all of this! Yet, it’s even harder for Josh going through all of this!  Naturally, his anxiety level has increased, which also hasn’t helped with his breathing trouble.

Please keep the children in your prayers.  Josh’s dad is flying out tomorrow morning to help with the boys and to be there with Josh.  Our prayer is that things start turning around for Josh toward recovery and for him get to come home to us! Our hearts ache to see him suffer like this.  Thank you for your friendship and partnership with us through prayer to our interceder Jesus Christ, from whom we have direct access to the throne of God! His will be done, his kingdom come!

Day +39

IMG_0003

Caption: after surgery–the straw-like device is to keep draining fluid from his throat.

The surgery went well yesterday.  Josh woke up from the anesthesia and said, “that wasn’t so bad!”  He didn’t feel sore or anything! He had one of the best surgeons and he didn’t see any infection, which helped the doctors get a clearer picture of what’s happening.  Josh has tested positive for the Epstein Barr Virus (EBV).  Also, they are doing a PET Scan to make sure the EBV has not caused cancer in his lymph nodes.  Since he is a bone marrow transplant patients with the EBV, he is at risk for a type of blood cancer /lymphoma or a complication called PTLD that’s very dangerous.  Our prayer is that he wouldn’t have any of that. Ultimately though, we ask that God’s will be done. He is sovereign over all of it! Medically speaking regardless of whether or not the EBV has led to cancer, they would treat Josh the same way.  They wanted to start Josh right away on a drug called Rituximab to combat the virus and get him feeling better quickly.  He started his first dose tonight along with some steroids.  The steroids will help prevent reactions to the drug plus help his swelling to go down.  He is feeling so miserable right now.  His neck is huge, his feet are swollen, he’s been running fevers almost non-stop even with Tylenol, and has had chills.  His breathing is not so good and his throat is a bit sore.  Despite the fierce suffering Josh is going through, he continues to be anchored by God and says this is all being used to define him. The doctor said with this new medication all these symptoms should start improving almost right away! The drug a form of chemotherapy and could cause side effects or reactions, so prayers for this to go smoothly are much appreciated.  Josh tends to have allergies and is sensitive to chemo.  He was given Benadryl and steroids to help with possible reactions.  In addition, they will be administering the Rituximab extra slowly through his IV.  Josh’s doctors and medical team have been doing an excellent job at keeping on the top of it!! They have been bringing different doctors together and even called specialists on FA from Minnesota to be extra cautious.

We’ve had the opportunity to pray with a couple of people during this past week and with others, we’ve been able to plant seeds.  One of the social workers here is a believer.  She came to check on us while the nurses were taking Josh’s vitals, and I asked her if she could pray for us.  It was neat for her to pray for us aloud with others in the room with us.   Josh said he was surprised she was allowed to do that with how awfully uncomfortable some people get when evangelical Christians pray.  We’ve also been playing the ESV Audio Bible from a Logos App on Josh’s iPad which has really ministered to Josh and me, and we never know who else may be listening.  Yesterday while Josh was in surgery, I  went into the waiting room and got to pray with a lady for her dad.  She was under much emotional toil because her father was not breathing very well after the surgery and was elderly.

I’ve been sending long days with Josh at the hospital to be able to talk to the doctors. This has been a bit of a challenge. A sweet saint from our church here in Clackamas brought over a meal today! Thanks, Annette! Also, Katelynn keeps doing a fantastic job with the boys! Thanks, Katelynn! The boys are doing well adjusting and not letting all of this affect them negatively too much. Keep it up, Noah and Nate!  Noah loves AWANA here and has quickly made many new friends. We thank everyone for the kind cards, encouraging messages, and prayer for our entire family (including Katelynn, of course, because she’s like part of our family now.) Josh likes to read the cards everyone sends in the mail! A million thank yous to all!!!! I wish I could write everyone a thank you note personally. THANK YOU!

Day + 37

The past couple of days have been very difficult.  My heart breaks for how sick Josh has been.  He has been spiking fevers and that’s with Tylenol almost around the clock (every four hours!)  With his fevers, come chills and discomfort.  Josh tells me the Lord is teaching him perseverance through this trial and that’s so encouraging for me to hear; yet, it still hurts to watch him go through the pain.  They have had him on a general spectrum on antibiotics for the past four days. The antibiotics do not seem to have improved the infection.  Although they don’t know the details at this point, they have identified his infection as a bacterial infection inside the right side of his throat.  They did a CT scan of his throat today and saw not much of a change–it didn’t get better or worst.  Josh says he feels about the same, only slightly worst.  He seems more congested and having a difficult time breathing.  The next thing they are planning if his infection continues not to improve is to do what they call a “straight forward” surgery to not only attempt to drain out some of the fluid in there; but also to take a sample and try to identify the type of infection to better target it with specific antibiotics.

They moved him upstairs a level up to the BMT unit where he had his transplant so the team can keep a better eye on him.  The funny thing is they even moved him into the same room he had with the beautiful view of Portland by the sky tram.  God shows his goodness to us in many ways like this; nonetheless, the raw truth is that humanly it still can be a challenge to find joy and peace in time of trouble.  However, we have experienced a kind of peace above understanding through the Holy Spirit who lives in us, because of the amazing work of salvation through Jesus in our lives.  We are ever thankful for Christ taking our place on the cross that we may not be punished for our sins, but freely have eternal life.  Please pray for this peace and joy to fill our souls and even overflow to others.  In the morning Josh’s medical team will see how he’s doing and decide weather or not they will do the surgery tomorrow.  He got some sleep last night and we hope he gets good sleep again tonight.  Your prayers for tomorrow are much appreciated!!

At the home front, Katelynn has done an amazing job with the boys and has kept very busy!! I have been gone a lot more… I try to be there at the hospital when the doctors come and discuss updates and treatments options.  This morning at ten they asked Josh to stop drinking or eating because he may end up having surgery.  It was not until four in the evening when they informed us that he wouldn’t be having surgery today.  We understand things take longer at hospitals, but its especially hard for Nathan to understand why mom needs to be gone practically all day.  We are thankful Nathan does really well with Katelynn–he LOVES her! He just naturally misses me.  It was also nice to have our friends from San Diego come into town to visit.  They took Noah out for half the day again. Thank you Miho, Kelly, Doug and Linda! We even had a meal delivered to our house this evening!  Thank you Stephanie! We praise God for his many blessings and provisions through his body, the church! Please continue to keep the boys and Katelynn in your prayers too!

Day +35 in the Hospital

Caption: the ENT Dr. Looking into Josh’s nostrils

Josh was admitted back into the hospital last night for a persistent fever.  It started as a low-grade fever on Thursday night and continued to progress.  It has been hard to try to determine the cause since he not only has had fevers and chills but also cold-like symptoms, a small amount of GVHD, plus his limp nodes on his throat are swollen  We spent most of yesterday at the clinic, and the night before that we had spent half the night in the ER.  At the ER, they gave Josh antibiotics and send him home.  At the clinic, they tried to come up with an out-patient plan to address Josh’s symptoms so he wouldn’t need to go to the hospital.  Josh’s nurse instructed him to call if his fever exceeded 101, so Josh asked if she could take his temperature right then at the clinic.  His temperature was 101.5 so she gave him Tylenol and started him on antibiotics, but still sent him home.  About two hours after being at home, Josh’s fever came back up to over 101 despite the fever-reducer.  After talking to our nurse and going back and forth we decided to have him admitted to play it safe.

Today Josh had a CT Scan on his throat and they found some clues to the kind of infection Josh may have… They found liquid and signs of a bacterial infection in his throat.  They are hoping that the antibiotics will stop the infection early enough that they would not need to cut him open and drain it through surgery.  Apparently, right now would be too early to drain the fluid through surgery anyways even if they want to.  They were surprised that Josh came back with signs of a throat infection since Josh had not complained much of any symptoms other than the swollen limp nodes which they thought were related to his cold. I think Josh has really been doing a great job trying to tuff it out.  He mentioned sometime last weak that he had a sore throat but it wasn’t bad enough for me to call on it.  Today, they took a sample into the lab to test it for Strep Throat.  We are thankful to have some clues, but are waiting and praying for more answers.  We pray that Josh will be able to fight whatever this is, with the aide of the antibiotics, and more importantly–the Lord’s help! Our nurse today said she was confident that given his blood counts, he will be able to fight this off.  We trust in God’s sovereignty and purpose in all of this, yet the process is scary at the same time.  Please pray for Josh to get some much-needed rest and comfort in the Lord during this trial-some time; and for wisdom for the doctors and medical team involved.

At home, the boys are both all healed from their colds and flues.  We are thankful that Katelynn and I did not end up getting sick too.  Noah had fun going on a hike with the men from Clackamas Bible Church here. Thank you, Pastor Ken, for taking him.  He also got to go to a birthday party of a neighbor and have fun with other kids.  We want the boys to have fun and get out, yet we have to be careful and pray that they don’t bring home any germs.  We appreciate your prayers so very much!

Day +31

Photo Caption: Before and after–Josh thought he was dead and then came back to life! lol 

Josh had a painful bone marrow aspiration done today.  Thank you to everyone who has been praying for that to go well.  It went as well as it could have.  Josh opted to receive pain medication through his IV, but it didn’t seem to help much.  He was able to have his favorite bone marrow biopsy physician–an experienced and husky man names Brian to do the procedure which really helps him.  Plus, they have the love for fishing in common and talking about fishing before jamming a drill on his back hip to extract a piece of his bone made a big difference to him! The best thing was that Brian had done the last three of these where Josh has prayed with him in the past couple of months.  When I told him I was praying for him right before the needle went into his back, Brian said Josh could say a prayer beforehand if he’d like and of course he took the opportunity and got to pray out loud in the pretense of two nurses! In about two weeks, we will get the results and should find out if there is any MDS disease remaining.  Even if he doesn’t seem to have anymore MDS the doctor may want to treat it simply because Josh is high-risk. The way would they treat it is by giving Josh a drug to kill the remaining MDS.  Our prayer is that this drug would not be needed.  We try to take the least amount of drugs as possible. His medication list right now is down to only four different medications. They weaned him off a couple and others were prescribed as needed for pain and nausea which he’s been blessed to not have hardly any need for.  During a pre-transplant class, they warned us that Josh may be on 30 different meds.  We praise God–the great physician for His care!

Josh is doing very well! All his counts are up and he is recovering steadily despite a lingering cold. We thank God for protecting Josh from getting the flu and hope that this cold will soon be history.  We hope that this whole process will soon be history and that we may look back and reminisce the faithfulness and presence of our Lord amiss this storm.  Josh’s platelet count was 111–just shy of the low normal of 150 for any ordinary non-transplant person! Also, both his red and white blood counts went up from a couple days ago! Even his neutrophil count went up slightly!

Noah is doing very well too! He had a cough after the flu died down, but that seems to have dwindled as well.  On the other hand, Nathan seems to have a bit of a relapse with his flu…  Just when we thought he was on the tail end of it, he started getting irritable; his temperature hovers around 99 degrees.  With a low-grade fever and him not acting like himself, we are trying to give him some extra TLC and prayers!

Thank you, everyone, who has brought over meals and reached out to help our little family in many ways!  Thank you for your prayers… we realize that besides the physical elements, there are very real spiritual battles going on that are won in prayer! Keep on!

Day +30!

 

Josh is halfway to Day + 60– when he will be able to regain some of his freedom, as far as going out in public (during less busy hours) and eating out at restaurants again! It has been a bit of stormy voyage thus far, yet our captain and master–Jesus Christ, sustain us along the way and gives us his spirit to bring joy and peace even in the darkest nights.

It was a challenge having two sick kids with the flu at home.  However, they are now on the mend.  Amazingly, Josh did not get the flu!!! He is still doing very well! Praise the Lord! When Josh’s nurse practitioner found out Noah was sick she wanted Noah tested and put on an anti-virus medication.  Later when Noah was confirmed with influenza B and already on the anti-virus, she wanted Nathan on it too.  Even though we dislike having the kids on medications, especially Nathan this was a serious enough threat to Josh where we had no choice but to pray the kids would tolerate the meds well and for them not to have any adverse reactions.  Please pray for them! Noah’s flu was cut short by a couple days and Nathan’s fever broke almost the next day! However, he still has a low fade fever and was back to feeling crummy today.

Katelynn has been an immense help!  Thanks, Kate! Although Nathan got to the point where he only wanted “Mommy” while he had a fever for a few days.  Nathan’s fever reached a high of 103.5 and we had to really keep on top of his temperature as well as wiping everything down with non-toxic disinfecting wipes and keep Josh isolated to his room as well as Noah isolated.  We all got to wear fun masks around the house too. However, there was no way to keep little Nathan isolated anywhere or to keep a mask on him! lol.  During this crazy time, a sweet saint from our church named Linda drove four hours north from Grants Pass to come to help out for a couple days.  Thank you, Linda!

By Resurrection Sunday, the boys had been feeling better and even got to go outside in our yard on a warm sunny day to do an Easter egg hunt! We did not go to church since the boy had just had fevers, but we did get to “go” online virtually to Grace Community Church via their Live-cast stream.  The kids enjoyed some Easter crafts with Katelynn and their new Easter baskets and gifts from Grandma Kim and Papa Don–thank you!! Also, thank you to everyone who has sent cards, texts, and encouraging messages to our little family.  We are so blessed and without a doubt beloved by God! We love you and appreciate your ongoing prayers!!!

 

Day +24

We have confirmed that Noah has the flu… Thankfully no one else in the house seems to have caught it even though it’s likely viral and very contagious.  Praise God for his protection! Poor Noah has been feeling miserable and spent the past two days in bed all day.  His temperature was 101 tonight.  I took him to Urgent Care earlier today to get tested for the flu since I had suspected it. Josh’s nurse suggested he get tested and put on a medication to shorten it.  He did test positive for Influenza B and he got put on the medication.  At home, we have all been working very hard to disinfect areas he touches like the bathroom doorknob and light switch since the flu can be pass through something he touches that then one of us touches and rubs our eyes with.  Noah has been doing surprisingly good at wearing a mask every time he goes out of his room.  Prayers for a speedy recovery for him and for the flu to make an exodus out of our home and far from Josh.

This morning Josh and I did a routine trip to the clinic where he had an infusion of magnetism and they drew some blood.  All his counts looked good–his numbers are as they should be and his platelet count is at a high of 69,000!  This means that Josh is recovering well and his new bone marrow is doing its job! In addition, Josh has no symptoms of GVHD! The nurse told us he’s not in the clear yet.  However, the further away from the day of the transplant the more likely he is not to get it! Please continue to pray against this GVHD.  Also, next week Josh will have another bone marrow aspiration did, which he dreads because they take a drill on his back hip and chip off a piece of his bone as a biopsy.  It hurts! In the past, he hasn’t had any anapestic because he likes to drive home afterward, but this time he might since I’ve been doing the driving, and he is still in one piece! lol.  They will be examining his bone marrow to see if his MDS is gone.  Please pray for the procedure to go smoothly and the MDS to be done away with!