March 5th, 1981 – November 5th, 2007
April 28 - November 15, 2007
We had a wonderful celebration of Jon's life on Monday November 12th.
More information (pictures, video) and further ability to interact with Jon's community of friends is available at jondevin.com
We will not be checking carepages very often from now on.
Thanks again for all the support!
Ralph
Several people have commented that they did not get an email last night when I posted the time of Jon's celebration service.
So this update is just to get the system to send out an email. Please check the previous post for information.
The celebration of Jon's life will be held at 11:00 am on Monday, November 12th, at Cedar Park Church in Bothell, Washington.
Direction to the church can be found here
We are also developing a web page for Jon at jondevin.com . Please check there for pictures, anecdotes from friends and other memories of Jon.
If you have something that you would like to see posted, please email to [email protected]
We are all doing as well as can be expected and appreciate your continuing prayers and support at this time.
Ralph
At 9:12 this morning, as we were singing the chorus Alleluia, Jon went home to be with Jesus.
All of us were gathered at his bedside knowing that the time was near.
We spent the last several days saying our goodbyes to him; so many of his and our dearest friends came by too.
While of course we are all in grief, crying a lot, we rejoice that he is in heaven, beyond the suffering he has endured the past 6 months, and enjoying the wonders of heaven.
Thanks again for all the love and support that you have poured out to Jon and our family during his illness; it has made all the difference.
I will post the time of the memorial service when we get it figured out.
Ralph
Jon is still at Evergreen Hospice, this is his 13th day here.
It is also the 13th day since he stopped getting nutrition via IV. He did eat a little (mashed potatoes, pancakes) at the beginning, but has not eaten anything for the past several days.
He has also gradually reduced his fluid intake - he now only asks for a drink or ice chips when his mouth dries out.
The staff here tell us that this is part of the normal progression of Jon's body slowly shutting down.
As you can all imagine, this is very difficult for all of us. So many, including the staff here, have said that it is one thing to see a loved one at the end of a long life make this journey towards death, but quite another to see a 26 year old going through it.
At the same time, we have very blessed moments, where Jon wakens to give us hugs or a few words of encouragement. It is at those times that we see he is at peace and is truly sheltered in Jesus' arms.
Jon has had quite a few visitors, personal friends, his youth pastors and leaders, family friends and of course family. He enjoys listening to conversation and joins in when he can.
The other night Sue Timpe came by with her keyboard and spent several hours leading us in worship, singing songs Jon had picked out a week ago. It was a very special, blessed time.
We can see God at work in this situation, drawing people towards Himself through these circumstances. Jon has seen some of this and draws contentment from the idea that his faith at this time has led people to the Lord.
Thank you all again for your prayers and support during this time; we are truly blessed! We continue to lift Jon up to the Lord, asking for comfort, peace and blessing, and know that even at this seemingly late hour God could heal him completely. As it has been from the beginning, Jon's life is in God's hands.
Ralph
From Betty Heide:
I have had Many Requests to have Prayer and Fasting for Jon and I still have the 24 hr sign up sheet. I can update it and people can contact me. I know some just like to Pray when God reminds them to Pray for Jon throughout the Day and night. Please give me your thoughts.
We can fast a meal or give up something (like meat or coffee) or what God leads you to do.
I have felt we should pray and fast for revival also. First in our hearts, the church, community and nation.
Please let Betty know if anyone else wants to be a contact person or host a prayer meeting in their home. If anyone wants to get together in the Prayer Room at church let me know.
Please contact Betty Heide at [email protected] or [email protected] or phone: 360-793-6688 or Lisa McKenney at [email protected]
Jon has now been an inpatient at the Evergreen Hospice Center for a week. We have had daily visits from Dr. Kohn and the staff here have been very kind and helpful.
When we came here last week our goal was to figure out how to get him home as soon as we could. As the week progressed this prospect became more challenging; Jon's condition continues to decline.
At the moment, his pain management is doing very well. We have been changing things gradually to try to reach the balance between pain control and Jon being groggy all the time.
As the week has progressed Jon's appetite has declined. He has been off the TPN (IV nutrition) since last Saturday. We are told his lack of appetite is very normal.
So with everything going on the doctor suggested, and we agreed, that keeping Jon as an inpatient was the best course of action. If Jon's condition improves next week we can always revisit going home.
Patti and I have been trading off spending the night here with Jon. There is a sleeper sofa in the room. Last night his cousin Devin Ellis stayed with him.
Even though Jon is asleep a lot of the time it is a comfort to spend time with him. It is very hard to see him in this condition but just as hard to not be here.
We are very thankful for the cards, visits and words of encouragement we have received from so many of you. We cling to the Lord, our Rock and our Salvation; He is our strength in this hour of need.
Ralph
I am writing this afternoon from a room at Evergreen Medical Center. We brought Jon in midmorning.
After a day of increasing discomfort (yesterday), Jon started throwing up; this continued through the night. His pain levels had increased and the nausea and discomfort causing the vomiting were not going away.
After receiving IV medications here at the hospital for nausea, and another increase to the level of pain meds, Jon is pretty comfortable.
In order to evaluate where Jon is physically and to develop a plan for his care and comfort, he is checking into the Evergreen Hospice Center. This should be for just a few days; our goal is to get him back home with hospice assistance there.
As many of you know, hospice care is all about providing comfort and as high a quality of life as possible for people who have exhausted medical treatment options. We are grateful that this kind of assistance is available, even though we hoped we would never be in this position.
Jon is not anxious about any of this and remains calm and full of faith. He is an inspiration to all of us.
Of course, we continue to pray for Jon's healing and restoration; however, we are prepared (as much as we can be, anyway) for the alternative. If things progress as they seem to be going, our remaining time with Jon could be very short.
Thank you for all your prayers and support; please continue to pray for Jon and all of our family.
Ralph
Another week has almost gone by.
Jon went in to the clinic on Friday for additional potassium via IV.
Jon has been wanting to go to the Point Defiance Zoo and asked again if we could go. Since the weather forecast was for a good day we got the family lined up and went to the zoo on Saturday. We all had a great time as you can see from the new pictures I posted.
Sunday morning Jon woke Patti and me up asking if we could go to the early service at Cedar Park. Of course we got right up. This is the first time Jon has made it to church since April! It was a great service and Jon enjoyed it all. During the prayer time in the middle of the service Pastor Craig had people gather around Jon and then led in a wonderful prayer. Jon was encouraged by this and by all the people who greeted him.
Sunday afternoon Patti, Jon and Barb and Sam Gopen went to Molbak's in Woodinville to see their annual presentation of Little Red Riding Hood - another good time for Jon.
After all the activity of Saturday and Sunday Jon has been pretty tired these past few days.
We went into the clinic on Monday for regular lab work. The results were that Jon's blood levels were still low, so it was back to the clinic on Tuesday for another transfusion. His potassium is now up to an acceptable level, so that wasn't an issue.
Since late last week Jon started retaining fluid again, so he has started taking a higher level of diuretics to counter that.
Jon's bilirubin level is creeping up and there isn't a lot that can be done for it, since it is due to the impact of the cancer on Jon's liver.
As time has gone by Jon's tolerance to the pain medications and probably his actual level of pain has been creeping up; we have raised the medication level several times over the past week and Dr. Kohn expects that to continue.
We are not sure what the coming days will bring, but are trusting the Lord for the strength and courage we need. Please continue to pray for Jon's healing and for his days to be full with joy and peace.
Thank you all! Ralph
After I wrote yesterday I found out that there was another issue that came up with Jon's lab work -- the potassium level in his blood was very low. So yesterday afternoon Jon received additional potassium via IV to bring that up. This deficiency is a direct result of being on diuretics, which leach minerals out of the blood.
In addition, his hematocrit and platelet count were low. So today instead of chemo Jon received a blood transfusion and additional potassium. Tomorrow he will go in for additional potassium.
This morning Jon started with his last radiation treatment, then went over to the clinic to have the transfusion/fluids. Before things got started we had another discussion with Dr. Kohn about where she feels Jon is medically and what should happen next.
Because of the various issues Jon is having she thinks chemotherapy must be put on hold, at least until these issues resolve. Further, she thinks that additional chemotherapy has little possibility of significantly impacting the cancer, but treatment would have great impact on Jon's quality of life. Although sad and unhappy about it, she doesn't think there is much more she can do for him medically except keep him as comfortable as possible as things progress.
The big issue is the impact on the liver as the cancer continues to grow. Dr. Kohn expects liver function to decrease gradually over time. When I asked what the time frame was for decline to become critical she estimates two to three months.
Although we have known from the beginning that the medical prognosis for Jon was not good, it is still devastating to come face to face with how short the time might really be. This is especially hard on Patti, but of course impacts us all.
Jon is remarkably calm and full of peace in the midst of it all; we are so proud of him and the great faith in God that he is showing.
We continue to see God's hand on Jon's life and are confident that He is at work in our situation. We know without a doubt that God could miraculously heal Jon this very moment, and pray for that. At the same time, we also leave the outcome of this situation in God's hands.
Please continue to pray for Jon (and all of us) as we move into this next stage.
Thanks! Ralph
Jon went in for his normal lab work on Monday, in preparation for chemo on Thursday. As I said last week we anticipated scheduling another CT scan during the week to see how the radiation had worked.
His lab results showed an increase in the level of bilirubin in his bloodstream. Bilirubin is produced by the normal breakdown of red blood cells. Normally bilirubin passes through the liver and is excreted as bile through the intestines. Jaundice occurs when bilirubin builds up faster than the liver can break it down and pass it from the body.
There could be several reasons for this, but the main concern in Jon’s case is that this could indicate that the cancer in his liver had grown and was blocking the bile ducts or otherwise impacting liver function. So rather than wait for the radiation oncologist to order a CT scan Dr. Kohn ordered one right away. Jon had the scan Tuesday morning.
The results of yesterday’s scan show that the radiation has had positive impact on the tumor around Jon’s esophagus, the spot where the radiation was focused, which is good news.
The bad news is the cancer has grown in the other areas. Jon had his normal radiation treatment this afternoon, after which he went to the clinic for a complete blood workup.
I am not sure when we will know what the doctors see as the next step. Decreased liver function will most likely mean the discontinuation of chemotherapy, since the chemo drugs need to be processed and eliminated. In any case, the continued growth of the cancer shows that the chemotherapy has continued to be ineffective.
Although this information is incomplete I wanted all of you to know what is going on so that you can lift Jon up in prayer.
As we have said throughout this journey, our faith and trust is in our awesome God, and the only thing getting us through it is His presence in our lives. Thank you for your continuous support and love.
Ralph
The last three and a half weeks have been a bit uneventful, which we are very thankful for. Jon's condition has been fairly stable, without any major crisis happening.
Jon has now had 19 radiation treatments; the series is scheduled to end next week. The radiation oncologists will be checking to see how the tumor has reacted to the treatments and decide what to do next.
Jon has had an increased appetite, having different soups, ice cream and shakes. He has been reluctant to try eating more solid foods. The radiation oncologist told Jon this week that his esophagus is probably inflamed from the radiation so it would be normal for him to have trouble swallowing at this point, even if the tumor has gotten smaller and allowed the stent to open up.
We have noticed that Jon's voice is a bit hoarse, this is also a probable effect of the radiation treatments.
The combination of radiation and chemotherapy has had a cumulative effect on Jon. This past week he has been very tired and has not had much energy.
One development that was amazing since my last update has to do with Jon's weight. His weight was gradually increasing due to fluid retention. Dr. Kohn had put him on a diuretic but it was not working. She increased the dosage and added an additional diuretic and Jon finally started losing the fluid. Over the past 3 weeks Jon has lost about 60 pounds; probably almost all retained fluids. Dr. Kohn has now cut back on the diuretic, feeling that her goals have been met. We will watch for any gradual fluid buildup and treat it quicker this time.
Jon has moved back upstairs to his bedroom. We took his regular bed out and moved the hospital bed, recliner, and a love seat in. It is a more private setting where Jon can be alone when he wants to be, but we can hang out in his room with him the rest of the time.
Jon is in good spirits even while being very tired. His trust and faith in God is a precious thing for Patti and me to see and be a part of. We continue to pray with Jon each day for his healing and restoration. Jon has had several visitors come by to pray with him; his prayer time with Pastor Darrell and Sherri Beebe from Mossyrock a month ago was especially impactful and uplifting.
The one continuing issue Jon is having is a pain in his upper right chest area that does not go away with the pain medication. This comes and goes but can rise to a very uncomfortable level and stay there for some time. The radiation oncologist thinks that this is pain from the esophagus and tumor transferring up to his chest. This pain keeps him from having long periods of sleep; he wakes up when it spikes.
Jon's lab results have been holding steady over the past couple of weeks; the blood counts have stayed good with only a couple of shots to help.
We continue to be blessed by all of you. Please pray for Jon whenever he comes to mind.
I will post another update when we get news on how the radiation and chemo are progressing. Thanks again for all the
love and support!
Ralph
There have been a lot of things going on since the last update.
After going through all these tests, infections, etc., Jon is doing much better. He is resting much better and has
been catching up on sleep he missed over the past weeks.
Jon will have his next round of chemo tomorrow afternoon. With both the chemo and the radiation nausea is common; he hasn't had any with the radiation so far and we pray that he will do fine tomorrow with the combination of both.
My specific prayer requests last update were all met - Jon's pain is under control, his IV food is working well now and he is able to take all his meds.
Thank you all for your prayers; God hears them and is answering!
The past two weeks have been very busy.
Jon had his first round of the new chemo on the 16th - it went well and Jon tolerated it.
However, blood cultures showed that Jon's temperature was fluctuating because of a staph infection. Starting on Friday the 17th Jon was in either the hospital or the clinic every day for IV delivery of antibiotics; this process took two hours each time. On the weekend at the hospital it took an hour or more to get the antibiotics from the pharmacy, so we would be there for 3 to 4 hours.
Due to low hematocrit, Jon had a blood transfusion on the 21st.
In order to eliminate sources of infections Jon's PICC line (permanent IV) was replaced on Wednesday the 22nd.
On Thursday the 23rd Jon had chemo again, only the new biological drug this week.
Jon began to experience very high levels of lower back pain mid week, in order to try to identify the source Jon had an MRI Friday afternoon, then a CT-Scan and esophagram(swallow test) on Tuesday the 28th and a bone scan on Friday the 31st.
On Thursday the 30th the clinic expected Jon to need another transfusion before his full chemo treatment, but his hematocrit was high enough to forgo that 4 hour process. Jon was home from chemo by early afternoon.
We delivered the esophagram images to Dr. Louie's office at Swedish and will be meeting with him next Tuesday to see if Jon needs surgery to remove a partial occlusion of the stent. The procedure would be on Friday if necessary. This investigation is prompted by the increased difficulty that Jon is having with swallowing and keeping medications and fluids down.
Jon is also experiencing distress when on his TPN(IV nutrition). After 3-4 hours of the 12 hour daily cycle he starts feeling funny; if we don't stop the TPN he begins to throw up. We can restart the TPN after a few hours, and let it run for another several hours before the cycle repeats. The nutritionist and doctors are working on a solution to this situation, changing the process, perhaps adding some medications to the food and possibly lengthening the infusion time.
Jon also has an appointment next Wednesday at NW Spine to investigate the possibility that the pain is from an inflamed disc in Jon's spine.
To help control the pain we now have IV medications we can give Jon when the pain gets bad, in addition to the other pain medications.
In the midst of all of this, we found out from Jon's insurance company that the new biological drug is considered experimental and the cost will not be covered by insurance. We are working on getting Jon enrolled in a clinical trial of the drug and to get him on financial assistance. We have been blessed to have everything covered so far.
As you can see, it has been a very busy two weeks since my last posting. Jon's immediate condition changes constantly; there are periods of relative rest alternating with the opposite. Our focus really has narrowed down to getting through each hour, then each day, as best as we can.
Jon continues to need your prayers and is so thankful for all of you. His immediate needs are relief from pain, ability to receive his IV food, and the ability to keep his oral medications down. Of course, we continue to pray for Jon's healing from the cancer.
Thank you again for all your love and kindness to Jon and our family during this difficult time.
Ralph
We met with Jon's oncologist today to review the results of the CT-scan from last Thursday.
The scans show that the cancer is continuing to grow, with existing locations getting larger. When I asked Dr. Kohn if she thought the past 12 weeks of chemotherapy had had any effect on the cancer she said that although she hopes that the chemo had slowed the cancer down it is probably more realistic to say that the chemo had little effect.
After explaining the results she went into the options Jon has for going forward. The first option is to decide to not continue treatment and switch to working on pain control and comfort. The other option is to continue chemotherapy with another combination of drugs trying to find the drug combination that will impact Jon's particular cancer.
Jon indicated that he wanted to continue with the treatments. The new treatment will consist of one drug from the first treatment series, and one from the second series, both at higher dosages than before, plus a new drug that has a biological effect on the cancer cells rather than a toxic chemical effect. Jon will get one of the drugs in a 48 hour infusion by portable pump, every other week, the others will be infused at the clinic. The new biological drug will be administered weekly.
The current plan is to do this for 4 weeks and then have another CT-scan.
Jon's pain levels seem to be increasing so Dr. Kohn has revised Jon's pain medication plan going forward. After meeting with her Jon stayed at the clinic to get IV fluids and pain medications, as well as to have blood drawn for lab work in preparation for commencing the new chemo plan tomorrow.
How are we doing in the midst of all of this? Of course we would all like to see Jon healed, either through medical treatment or through God's miraculous intervention. We continue to pray for this every day and are so grateful for all the faithful who are joining us in this prayer.
At the same time, while we are asking for Jon's healing, we are also committing Jon's future into God's hands. In ourselves, we are powerless; no effort we can exert will heal Jon. So while we are asking for Jon's healing we are also asking that God's will be accomplished in Jon's life, in our lives, and in the situation we are in. We put our trust in God and in His promises to us.
Those of you who have been in this kind of situation know that your focus narrows down to getting through each day, accepting and surmounting the challenges that come. Most of our daily prayers have that same narrow view, deliver Jon from the pain of the moment, stop the nausea, give Jon rest, and so on. And God answers these prayers each and every day!
So how are we? Our faith and trust in God is unchanged, we continue to look to Him for Jon's healing and for strength to deal with each day. We are holding each other very close, enjoying being together and finding strength in each other. We continue to be encouraged and uplifted by your prayers and kind words. Thank you!
Ralph
Last Thursday (August 9th) Jon went in for lab work and to have a CT-scan to see what was going on with the cancer as a result of the chemo.
All the labs looked good except for the HCT (hematocrit), which is the proportion, by volume, of the blood that consists of red blood cells. His was low enough that they scheduled a transfusion for later that day. We got home at about 11:30 that night.
We were able to go away for the weekend to a beach house loaned to us by some friends (thanks!). Jon had a great time on Saturday, walking on the beach, playing with Baxter and just relaxing. I posted some new pictures taken this weekend. Sunday morning was a bit rough and Jon ended up sleeping most of the morning and early afternoon.
We are waiting to hear the results of the CT-scan and will let you all know as soon as we do. We expect to continue chemo with the next treatment coming up this Thursday.
Please continue to pray for Jon and his healing. Although there are times when Jon and the rest of us get down, we are generally in good spirits and continue to put all of our faith and trust in the Lord. We thank God every day for all of you and cherish your support.
Ralph
Wow, it has been 3 weeks since I posted an update. I keep meaning to do one but the days slip by . . .
Last update was on a Thursday, when Jon received the 2nd treatment of the new chemo drugs. He had a transfusion on that Friday, which went just fine. As I mentioned in the last update, the second chemo drug was being infused by a pump over 4 days, to be disconnected Monday morning. We were planning on leaving afterward for a week at the Oregon coast.
Well, things changed. Sunday morning about 12:30 am Jon was running a slight fever so we ended up in the emergency room having tests done to make sure he didn't have an infection. After 5 hours we went home with a prescription for some antibiotics. It ended up we didn't need them, the tests came back negative for infection. Praise God for that!
By Monday morning Jon was very nauseated and throwing up, probably due to the chemo drug being pumped in over the weekend. He received fluids and additional anti-nausea drugs when he went in to disconnect the pump, but we held off going to Oregon to see how he did. Tuesday he went in for more fluids and help, and felt pretty good by that point. Jon, Andrew, Patti and I went out to see a movie and have dinner. Since we had already missed a few days at the coast and the weather wasn't looking good we canceled the trip.
Yesterday was the second treatment of the second cycle on the new chemo drugs. The second drug was infused over 2 days each treatment, half of the amount and time of the previous treatment. At this level Jon seems to tolerate it much better.
Jon is scheduled for a CT-scan next Thursday to see how the treatments are working; we probably won't know the results until early the following week (13th-14th?).
Jon's blood counts have been stable. He has received injections or IV medicines to stimulate blood cell growth, but has not needed an additional blood transfusion.
For most of the last two weeks things have been uneventful and routine. There have been a few incidents of unusual pain but nothing lasting. With just a few exceptions, he has been able to swallow his pills.
Jon is still on TPN, food delivered through his IV directly into his bloodstream. He continues to have trouble eating very much; not so much the clogging problem he was having before but now more with actually digesting the food. His weight is stable but he misses eating his favorites!
As I look at the list of prayer requests in the last update I think that we have seen God's hand in all those areas, with the exception of knowing how the chemo is impacting the cancer. We continue to trust God for Jon's healing.
We thank God every day for having so many people keeping us in their minds and keeping Jon constantly before the Lord in prayer. Thank you!
Ralph
Jon started his new chemotherapy last week. It was quite a difference from before, spending 8 hours at the clinic previously dropped down to less than 3 hours on Thursday.
As we said last time, one of the drugs would be infused at the clinic, the other would be taken in tablet form. Well, Jon had some difficulty with the tablets, which are fairly large. On Saturday at least one of the tablets got stuck. As they metabolize the tablets actually expand into a gelatinous mass; we think this happened and made the clog worse. So we discontinued the tablets and as of today switched to having that drug infused over several days with a small pump. This first time will be over 4 days; subsequent treatments will be 2 days per week.
With the clogging Jon had trouble with his pain medications, which are now all pills as well. So it all made for a bit of a challenging week.
Yesterday we went back to Swedish and had another barium swallow test and X-ray to make sure that all was well with the stent in Jon's esophagus. Dr. Louie met with us and said the scans showed that all was well and the stent was wide open. We also found out that the stent is about 21 mm in diameter at the top, a little over 3/4 of an inch. That is a pretty big opening but Jon's food has to fit into that opening and then drop through about 7 inches of tube by just gravity and liquid helping it down. Jon was relieved to find out it was ok. Dr. Louie did say that the X-ray showed that the cancer has gotten into the top of Jon's stomach and is pushing on one side of the lower opening of the tube; not an immediate problem.
Before every chemo treatment they check Jon's blood for cell levels. This morning both his red and white counts were significantly lower than they had been last week. They continued with the treatment but Jon is scheduled for a blood transfusion tomorrow and will be getting shots to help stimulate white blood cell reproduction. There are, of course, issues with transfusions and with the shots; please pray that this will all go well.
Otherwise, Jon's therapy went well today and he has had a good day. After he was done Patti and Jon went shopping and had lunch at Red Robin.
Having his nutrition delivered via his PICC line (IV) has been a good thing. Jon's rapid weight loss has stopped and he has actually gained about 12 lbs from the low point. The infusion started at 24 hours per day; as Jon has acclimated and had no side effects they have gradually ramped the rate up; it now takes just 12 hours a day. They have also lowered the nutritional content to try to reach an equilibrium.
We are trusting God in all of this and praying that he has led Dr. Kohn to a chemotherapy that will have a great impact on Jon's cancer. Please continue to pray for Jon's healing and more specifically for:
We are going to try to get away with Jon to the Oregon coast next week. This could be a challenging time and we will
be away from Jon's doctors, but we are praying that everything will go smoothly and for a great week of family time
together.
Even in the midst of all of the medications and procedures, there are moments where it all seems normal, when Jon seems perfectly fine. And at the eternal level, that is the absolute truth - Jon is perfectly fine. It is great to have those moments to remind us.
We are so blessed by all of you; thank you for praying and holding Jon and our family close.
Ralph
At 2:00 this afternoon Jon, Patti and I met with Dr. Kohn to talk about a pain meds and to review the results of the CT scan from last Thursday.
The CT scan results show that the cancer is worse. The spots visible in the previous scan have grown larger and there was at least one new spot in the liver. This growth is not rampant, but is significant.
This is probably the main reason that the pain medication seemed to be less effective; in fact the pain levels have probably gone up. Dr. Kohn adjusted the medication upward to compensate.
As a result of the scan Dr. Kohn is discontinuing the previous chemotherapy and starting Jon on a completely different set of drugs. One will be infused in the clinic like before, the other will be in tablet form which Jon will take twice a day. Jon will still be on a two weeks on, one week off cycle.
The new drugs have different side effects, such as a higher possibility of hair loss and a higher possibility of numbness and/or tingling in the fingertips. There is also a high probability that the white blood cell counts will be more adversely affected, requiring post-treatment injections to stimulate their production.
Of course, this is not what we hoped for and makes the road ahead a bit dimmer. However, we were told from the outset that Jon's cancer was going to be difficult to treat and that their best medical outcome would be to arrest it, not eliminate it. So this result is not unexpected medically.
The wonderful, amazing thing is that we can put our trust in the Great Physician and leave our anxieties about the future in His capable hands. What a blessing to know the He knows all our weaknesses and diseases and that He is in control of our lives.
Thank you all for standing with Jon and our family at this time. You don't know how much your care, support and prayers means to Jon and to us. From the little boy who prays for Jon every day, to the prayer warriors keeping vigil, we know that prayers are continuously before the Lord on Jon's behalf.
There is a lot to catch up on since the last update, which was 10 days ago.
In trying to eliminate possible sources for Jon's foot pain, Dr. Kohn ordered a bone scan; this was to look for bone cancer. The scan came back fine. This is what she expected but still a relief.
She has prescribed a drug normally used to treat gout to see if the pain is gout related. Jon just started this a few days ago so we don't know yet if it is helping or not.
After being in the clinic twice for IV fluids, due to the throwing up issues I mentioned last time, and because of rather rapid weight loss, Dr. Kohn prescribed home infusion of TPN (total parenteral nutrition), which is basically food delivered via IV. She also prescribed home infusion of IV fluids for the 3 days immediately following chemotherapy. So, we got trained on how to do all of this last Wednesday and Jon has been receiving nutrition this way since then. He is still eating normal food but at this point his main source of food is the TPN. Dr. Kohn's goal is to stabilize Jon's weight where he is now. Since going into the hospital on April 25 Jon has lost about 50 pounds!
We are also trying a different anti-nausea medicine.
Jon's chemotherapy on Thursday went well; he ended up napping most of the time he was at the clinic. The combination of medicines, nutrition and fluids, and a lot of prayers, resulted in the smoothest post-chemo week Jon has had yet (out of 4). No measurable nausea, no throwing up, low general pain and low left foot pain.
We went out to dinner last night to celebrate some birthdays; Jon had teriyaki chicken, sauted mushrooms and some twice-baked potatoes. He loved it all! Afterwards, everyone went for a short walk along the shore of Lake Washington. A great evening! I added a couple photos of Jon from last night.
This coming Thursday Jon will be having the first CT scan since he started chemotherapy. This will show Dr. Kohn what has been happening to the cancer over the past 6 weeks. I am not sure when we will get the results, probably early next week.
Having good days during the treatment process is such a blessing; sometimes our focus narrows down to just the day we are currently in. Now, having the prospect of seeing what has been going on during the past weeks pulls us back up into looking at the longer view.
We don't know what the results will be, but we are held in the arms of Someone who knows what is going on without looking at a CT scan. We know that God is able, that He is faithful, that He loves Jon, and that He is in control of everything. And that is enough.
We continue to be blessed by all the love and care; just knowing that you are all praying and watching over Jon and our family is an amazing comfort; thank you so much!
I will post another update as soon as we hear what the CT scan shows.
Ralph
Jon's chemo treatment went well on Thursday, no complications or side effects at all during the day.
Dr. Kohn has scheduled Jon for a CT scan on the 28th for our first look at what the cancer is doing after starting chemo. This will be on the completion of 2 treatment cycles rather than waiting for 3 cycles.
Jon had a good day yesterday with very little reaction to the chemo. He did experience a flushing sensation on his face and neck from time to time, but that was about it.
His biggest aggravation at this point continues to be the pain in left foot and leg. This is fairly constant, cycling up and down from bad to worse, and does not go away with the pain medications he is on. Please continue to pray for relief from that, that the pain will go away miraculously and/or that the doctor will figure out a way to deal with it medically.
Jon was having a problem with throwing up for no apparent reason. We ended up going in to the clinic on Tuesday. After some lab work and examination they gave Jon some IV fluids. The problem has gone away; he has not had a problem since then. Jon thinks it might be one of the medications he was taking which we discontinued for the past couple of days. We will try to reintroduce it and see if the symptoms return.
This coming week we have a change in the routine; Dr. Kohn wants to do the lab work a few days before the chemo treatment rather than on the day of. This is because the white blood cell count is slowly declining and she wants provide medical assistance to increase the count if necessary in time to continue the treatment as scheduled. Please pray that Jon's blood cells will continue to reproduce normally in spite of the chemotherapy.
We continue to be supported and comforted by all of the prayers and encouragement we are receiving; thank you all so very much! Thanks also for the meals and other acts of kindness towards Jon and our family; we appreciate all of you!
Ralph
Jon is just a couple of days from his next treatment, this Thursday.
Last week was the "off" week of the two weeks on, one week off routine. Jon and Patti went in to the clinic on Thursday to have Jon's blood analyzed to check on the levels of his red and white blood cells and platelets. All the readings were good, close to or better than the week before; we thank God for that.
They were not able to draw blood through his PIC line, so Jon will need to go in a little bit early this Thursday to have that issue corrected. We pray that they will be able to fix it easily.
Jon has been getting stronger. He has been taking 2 to 3 walks a day with our dog Baxter, with these walks getting longer and traversing steeper streets. Although these tire him out the exercise definitely makes Jon feel better.
His lungs appear to have recovered from the compression due to the infection back in April. When he started using the incentive spirometer he could barely get to the 750 level. He progressed to the 1,500 level and was at about 2,000 when he started chemo. He can now hit the maximum level of 4,000! This is another answer to prayer.
There are challenges along with the good news. Jon is trying to eat more "normal" food, which he has to eat very slowly and chew thoroughly before swallowing. When the food he swallows reaches the stent in his esophagus, it has to drop the rest of the way into his stomach with just gravity and the help of swallowing fluid. He has gotten food stuck several times, which he has to work at getting back up to unclog the stent. Because he hasn't eaten much solid food for almost 2 months his stomach is also having difficulty digesting what he does get down. All of this is resulting in Jon throwing up quite often. Please pray that Jon's eating situation will improve and that he will be able to ingest the right amount of nutrition to stay healthy.
Jon has lost quite a bit of weight; about 40 pounds since he went into the hospital on April 25th. This can be a mixed blessing -- it is great to get rid of the pounds as long as it isn't making him weaker. We are praying that Jon will be able to increase his level of exercise to keep his muscles and body strong.
All things considered, we are grateful that Jon is doing as well as he is; the effects of the earlier infection and the side effects of chemo could be much worse. We believe that God is answering all of our prayers on Jon's behalf, and will continue to do His work in Jon's body and life.
It is impossible for us to express the gratitude we have for all the love and support we continue to receive; thank you all so very much.
Please continue to remember Jon in your prayers, especially this Thursday and with the issues mentioned above. Thank you.
Ralph
Meals for the Devins
Hi everyone. I have been inspired by so many of your messages and postings on this Care Page! How incredible it is to see the family of God come together!! I know so many of you have asked how you could help the Devins through this time. I thought this would be the best way to get the word out that there is an opportunity to help their family while Jon is receiving treatment by providing a meal. Margy Grenell is organizing an effort to provide a meal every other day. (She is scheduling through August right now.)
If you are interested, you can e-mail her at [email protected]. She can get you on the schedule and let you know food preferences and directions to the Devins if you need them.
Thank you!!!
Lisa McKenney
It has been over a week since I posted an update; sorry about that.
Jon spent most of last Friday (May 25th) resting after an exhausting day getting the chemotherapy. The only side effect from the chemo that he had was nausea, which was controlled fairly well by the medicine that was prescribed for him to take at home. By Sunday the worst of the nausea was over, Jon just felt a bit "off" for the day.
Monday through Wednesday were good days, then it was time for chemo again on Thursday.
Jon went through the treatment process without a hitch! The drug that Jon had problems with last week was administered slowly from the outset, and the atrophine to suppress the negative reaction was administered prior to starting the infusion. Jon spent most of the treatment time napping! Instead of spending 11 hours at the clinic, Jon was out of there in under 8.
Jon's post treatment nausea is quite a bit lower this week, which is a nice improvement. Thank you for all the prayers that treatment would go well; we believe that Jon's significantly better day was the result.
We want to thank all of you who have provided us with meals; it has been a blessing to have that task taken care of so well. Margy Grenell has been coordinating the calendar for meals; thank you Margy! If you want to contact her she can be reached at [email protected].
We continue to look to the Lord for healing for Jon. My mom found a great verse, 2 Corinthians 1:10-11, which by inserting Jon's name reads:
He has delivered Jon from such a deadly peril, and he will deliver Jon. On Him we have set our hope that He will continue to deliver Jon, as you help him by your prayers. Then many will give thanks on Jon's behalf for the gracious favor granted him in answer to the prayers of many.
We give thanks each day that we have to enjoy life with Jon, and are able, for the most part, to leave the future in God's hands.
Thanks again for all the love and support; we are truly blessed to have so many friends, all over the world!
Ralph
After being at the clinic for 11 hours, Jon got home this evening at just after 8 o'clock! It was a very long day and he is exhausted.
Dr. Kohn and the clinic staff had warned us that the first day of treatment might require adjustments in rates of infusion and additional medicine to counteract side-effects. This turned out to be true for one of the chemical agents that Jon was given. He was cautioned to tell them if he started sweating or having cramping, which happened twice during the treatment. They administered an additional medication to counteract those effects and cut the rate of infusion in half. This lengthened that particular part of the treatment from 1.5 hours to over 3.
He also had severe pain in his left foot. He has had numbness and prickly feelings in that foot since the surgery, but it has turned to pain in the last few days. This turned out to be the major trial of the day. He ended up having an ultrasound of his leg to make sure there weren't any blood clots (there weren't) and an x-ray to look for broken bones. We will find out about the x-ray tomorrow.
He had some trouble with his permanent IV that also took additional time to solve.
Now we are at home waiting to see what additional side effects might occur. The most common for one of the drugs is diarrhea, for the other it is extreme nausea. They gave medications to counteract both before we left the clinic, and we also have additional medicine to administer if needed.
Please pray that Jon's side-effects will be mild and that he will rebound quickly from the challenges of the day. He is feeling some nausea and pain, but we hope that is mostly due to being so tired.
Jon continues to be greatly encouraged by all of the tangible evidence of love and support he is getting; meals delivered, calls, visitors, cards, postings on the website -- these are all uplifting and very much appreciated. Thank you all so very much.
Ralph
Jon had another CT scan today and we met with Dr. Louie this afternoon to review Jon's progress. The CT scan showed marked improvement in his left lung; that is good news.
Dr. Louie also removed Jon's remaining drainage tube, which was a relief for Jon. Jon said it felt like a snake wiggling around inside as it pulled out!
After checking things out Dr. Louie said that Jon was doing great and he was clearing him to start treatments with Dr. Kohn.
He also said that when Jon's case was presented to the cancer board some ideas were put forward that they hadn't thought of before; they are running a few more specialized slides of the liver biopsy material to try to narrow down the origin of the cancer a bit more. The chemotherapy Jon will be starting would be the prescription regardless of the cancer origin so we don't need to wait for these results.
On our way home from Swedish Jon and I stopped by Northgate Mall to visit my daughter-in-law Julia and to wander around some. Jon was getting a bit hungry so we stopped by the Lake City Dick's Drive-In for a milkshake. Well..... Jon convinced me to let him try nibbling down a cheeseburger with his shake! He took little tiny bites and chewed them to a pulp; it was a lot of chewing but he ate nearly the whole thing! Jon said it was the best!
Jon starts chemotherapy tomorrow morning at 9:00.
Today was a good day and a great way to get ready for tomorrow. As can be expected, Jon is a bit apprehensive about starting treatment.
Thank you all for keeping Jon in you hearts and prayers; please pray that treatments will go well, that Jon will have little or no side effects, and that God's healing power will be at work in this process.
Ralph
Not a lot has changed since my last update on Wednesday. Jon is maintaining both physically and mentally, although his pain level spikes from time to time.
We met with the clinic pharmacist on Friday to discuss the chemical agents being used, the possible side effects and what they can do to minimize them, and what happens during the infusion process. They also gave us literature on each drug and on chemotherapy in general. This was all very informative, although reading and hearing about chemotherapy in detail is unsettling.
Mary Hsu came by on a house call to give Jon some treatments designed to help his left lung continue to expand and heal. Jon's breathing improved after the treatment and he slept for several hours.
We took Jon to Fred Meyer yesterday to get some clothes and other items. It was good for him to get out of the house, but very tiring.
There are moments when Jon's pain spikes that he starts to despair and wonder what is going to happen to him, if he is going to get better or not. When we stop and pray, and then read the prayers and scriptures that you have posted on the site, God's peace descends on Jon, calms his spirit, and the pain goes down. We are all blessed by your continued prayers and encouragement. God is good.
Jon's immediate prayer needs are:
We are all so grateful for all the ways we are being supported and nurtured by our friends; it is awesome to be part
of the family of God. Thank you all so very much.
Have a great Sunday! Ralph
Jon, Patti, Andrew and I met with Jon's oncologist, Dr. Kohn, this afternoon to talk about treatment plans.
After making sure that Jon wanted to have treatment, she said that all treatment options at this point would be chemotherapy. She had several different combinations of drugs to choose from, and recommended a combination that would have the least impact on white and red blood cells and platelets.
The chemotherapy would be administered once a week for two weeks, third week off, then repeating.
There are different side effects for each of the chemical agents, which they can minimize with additional medications. The level of side effects varies from patient to patient.
When we asked her what a good result would be from the therapy she had two answers. A minimal good result would be arresting the growth of the cancer. A better result would be to see shrinking of the existing cancer cells. It is very unlikely that chemotherapy will eliminate the cancer. So the best result she could envision is that Jon would respond well to treatment, the cancerous cells and tumors would shrink, and the cancer could be kept at bay with long-term chemotherapy.
We already knew that level IV esophageal cancer did not respond well to treatment so Dr. Kohn's discussion with us was not a big surprise, especially in conjunction with our discussion yesterday with Dr. Louie. Nonetheless, it does bring us face to face with the limits of what medical science can do for Jon at this point.
But we know that medical treatment is just one of the tools that our Great Physician uses, and we know that nothing is impossible with Him.
Jon is anxious to be strong enough to proceed with the treatments and is working hard to increase the capacity of the left lung and to get mobile. He is walking our dog Baxter several times a day, which was one of his goals while in the hospital.
Please continue to pray for Jon's healing; we know that God has touched him already and brought him through the last three weeks, but with what is ahead Jon needs God's healing even more.
We are not discouraged by today's events, although we are saddened by the prospect of Jon going through the treatments and by the medical prospects. The Lord is our strength and our salvation, and Jon's life is in His hands.
Ralph
Jon, Patti and I just got back from meeting with Dr. Louie, our surgeon at Swedish Hospital.
He was pleased with Jon's recovery from the infection, although the left lung still needs to expand and recover a bit more. If all goes well the remaining drainage tube will get taken out when we visit him next week.
As to the cancer and the results of the liver biopsy last Friday, the news was not so good. The liver biopsy found cancer cells that look the same as those found in the esophagus. Although they are doing a few more specialized stains and slides of the tissues, they believe that Jon has an esophageal cancer (95% confidence level) which has metastasized to the liver. This means Jon is at a level 4 with a cancer that does not respond well to treatment. When I asked Dr. Louie about surgery to repair the esophagus, he responded by saying that it is unlikely that Jon will recover to the point where that surgery would make sense (my paraphrase).
While this is not unexpected news medically, it is not what we have been hoping for.
We will be meeting with Dr. Kohn, Jon's oncologist, tomorrow afternoon to discuss the various treatment options.
Please continue to pray for Jon's doctors, and especially for Dr. Kohn as she reviews Jon's case.
While we are saddened by this news, our confidence that God has Jon held close to His heart is not shaken. We can only stand in the faith that God has everything under control, and that His plan for Jon's life will be accomplished.
Your prayers for Jon's healing are precious to us, and your words and acts of encouragement and support are a tremendous blessing. Thank you so much for holding our family close during this time.
Ralph
Jon's IR biopsy of the liver went well today. It was a long morning, arriving at Swedish Hospital around 5:30 am, procedure around 9:00, recovery for a couple hours till noon. Even so, Jon went through the process without the distress he has had during previous CT scans. Another answer to prayer!
The radiologist was able to biopsy a different area of the liver, one of the smaller "spots" that had showed up on ultrasound imaging. The pathologist should have results to Dr. Louie in time for our Tuesday meeting. This is also an answer to prayer, since these smaller areas are much harder to reach. We are praying that the biopsy will show no cancer cells in the liver.
Thanks again to everyone. Your prayers, and outpouring of love and concern for Jon are effective in so many ways; I don't have words to describe how much this has meant to Jon and to Patti and me.
Unless there is unexpected news to report in the meantime, our next update will probably be after our visit with the doctor on Tuesday.
Please continue to pray for Jon's healing, and especially pray for our doctors as they work on developing a treatment plan.
Ralph
Today Jon had the blessing of a peaceful, uneventful day. What a contrast from the busy days just past. Being home is such a relief.
However, it wasn't completely uneventful. The extra-long hospital bed we ordered was delivered; it looks like it will do just fine. Nurses visited to check up on Jon and to deliver some additional items.
The last item of the day is that Jon has an appointment for another liver biopsy tomorrow morning. We need to get to Swedish by 5:30 am! His biopsy procedure will happen around 8:00 am. Please pray that the biopsy will provide the pathologist and doctors the information that they need to be certain about what is going on (or NOT going on) with the liver.
Thank you for all of your prayers for Jon's healing. While we are confident that Jon's future rests in God's hands, and the His healing power is at work in Jon's body, we don't know what that future will be. If it is a miraculous healing tonight, we will praise God. If it will be a longer path, involving things like chemotherapy and surgery, we will still praise God.
We will know more next week after meeting with Dr. Louie. In the meantime, we pray that Jon's health and strength will be renewed during this time of waiting. Thank you all for sharing this burden with us; it is such a blessing to have our lives wrapped inside your prayers and encouragement.
Ralph
Jon has been released from the hospital and is at home! What an awesome milestone!
Dr. Louie came by this morning and said that everything looked good for release; the final approval came down in the early afternoon. Patti spent the day learning about administering the medications, preparing the foods allowed on the liquid diet and so on. Then she went to the pharmacy at get all the meds. The process seemed to drag on and on, but finally Jon was in the car heading home!
After looking at yesterday's MRI of the liver, Dr. Louie would like to schedule another liver biopsy; he suspects that something is wrong there that the last biopsy didn't catch. This could be done tomorrow or Friday.
We have an appointment to meet Dr. Louie at his office next Tuesday to talk about the diagnosis and treatment plan for the cancer in Jon's esophagus. I think that he is still somewhat unsure about what is actually going on; please pray for wisdom for all of our doctors.
Jon is very happy to be home. We bought a recliner for him to sit in during the day; Patti and Jon actually made a stop on the way home to try out one that I had checked out earlier. A hospital bed will be delivered tomorrow for him to sleep in. To make things easier we are converting our rec room into his recovery suite; this will help Jon avoid going up and down the stairs all the time.
Jon's recovery from the infection and surgery will continue for several weeks, but will happen much quicker here at home.
We are so thankful for God's healing and are confident that He has Jon's future under control. We are blessed to have so many friends supporting Jon and our family in prayer; it has and continues to have a great impact - thank you!!
Ralph
Jon's surgeon, Dr. Louie, will be returning from out of town tomorrow and will be deciding if Jon is ready to go home or not. In preparation for going home all of Jon's medicine has been switched to oral rather than IVs. All of Jon's vital signs are good and his white blood cell count has dropped to normal, showing that the infection is under control.
One of the doctors who examined Jon yesterday commented that his recovery from the infection was one of the quickest that she had ever seen. We know that this is evidence of God's healing touch.
Jon had an MRI of his liver today; the doctors wanted to get more information. Although a much longer procedure than the CT scan yesterday, Jon recovered from the stress of the procedure much quicker than yesterday. We haven't heard yet if the MRI gave the doctors new information or not.
Jon continues to have a high level of pain in his central chest area, probably from tissue that is still recovering from the infection, and also from the esophagus. This serves as a constant reminder that Jon still has serious issues to deal with.
As we take Jon home we will be faced with all the challenges of taking care of him there; preparing food (Jon is still on an all liquid diet), administering medicine, getting the right bed, the right chair to sit in, and so on. We are quite happy to face these issues since Jon will be home.
We are so blessed to know that God is in control, that He loves Jon, and that we can trust Him without reservation. We know that He hears all of the prayers that we have been raising before Him. Thank you for your continued support and prayer.
Ralph
Jon was cleared to take a shower today. I don't know if I have ever seen anyone enjoy a shower more. He felt so much better freshly washed and shaved.
They took x-rays of his lungs this morning, the left lung has expanded but is still working on recovery.
One of the resident doctors told Jon the "right" way to order high-protein milkshakes from the kitchen, and that the best flavor is vanilla. Jon has had 4 of them today! Getting onto a more normal diet is a prerequisite for discharge.
Late this afternoon Jon went for another CT scan. It was very painful for Jon to be flat on his back for the procedure. We have not heard from the doctors yet about the results.
Jon got quite a bit of rest today, napping for long periods of time. This was great; He has had a hard time getting rest at night.
He has been reading the website postings and cards, and the poster from Cedar Park Christian School, and has been amazed at all of the love and encouragement everyone has expressed. Thank you.
Please continue to pray for Jon's healing and recovery.
Ralph
Jon had another good day today.
The news of the day was that the last x-ray showed that his left lung had expanded back to normal. Praise the Lord!
Jon was taken off IV fluids yesterday, which was also another milestone.
He is working hard on rehab, anxious to get back home as soon as possible.
The doctors have switched Jon's pain medications again, please pray that the pain will go away as the healing process continues.
We can't say enough about the love and support we have received from everyone. We gave Jon a poster today with written encouragements and prayers from students and staff at Cedar Park Christian School; he loved it!
Ralph
Jon has spent most of the day sitting up; eating and talking with us, watching TV. His legs got a bit swollen so he is back in bed with them elevated. He is now sleeping, which is great.
The good news of the day is 1) He is off of the oxygen and 2) They have switched his pain meds from IV to oral. He is now down to one IV which will be removed when he is eating regularly.
He asked for us to bring a razor; 2 weeks of beard growth can be very itchy!
He enjoyed eating today, the chocolate ice cream was especially tasty!
Thank all of you for your continued prayers for Jon. We can see God at work in Jon's healing process and know that Jon is in the Great Physician's hands.
Thank all of you who have sent cards; we spent part of the morning reading the postings on the website and the cards to Jon - he enjoyed all of the encouragement. Ralph
We praise the Lord as Jon had another day of continued improvement.
The main feature of the day was more physical activity. He sat in a chair for several hours, walked up and down the hallway a few times, got in and out of the bathroom, stood up for some x-rays. These activities tired him out, but what a difference a week makes!
He is still on a very low level of oxygen and is still on some pain killers, but both are gradually being reduced.
He also continues to have CPT (chest physiotherapy) to clear his lungs, as well as the physical and occupational therapy.
We found out that the goal is to get Jon discharged by next Wednesday. This would be great.
Jon still needs lots of prayer, specifically:
We continue to be encouraged in our spirits; First and foremost, because God is mighty and we trust in His provision
and second, because of the faithfulness of the family of God in intercession on Jon's and our behalf. We feel the
peace and confidence that each of you has prayed for. Thank you. Ralph
We have had another day of progress.
1. Jon's chest drainage tubes were taken out.
2. Jon's lungs continued to clear, although the lower section of the left lung is still distressed. Oxygen assist
has been lowered significantly.
3. Jon has begun physical therapy - getting out of bed, standing with a walker, sitting in a chair. He has not
walked very far yet, but that is coming!
4. Biggest news - Jon has been moved from the ICU to a surgical recovery ward. This is great. It was a challenge
moving the nice wider and taller bed from the big ICU room to a much smaller room, but it worked. So he is no longer
hooked up to multiple monitors and tubes, just a couple IVs and an oxygen tube.
They will be working hard to get Jon ready to discharge as soon as possible. Treatment of the cancer would be done with Jon as an outpatient.
God is at work! Jon is in good spirits and getting stronger all the time. He is tired, but that is mostly because he hasn't gotten a lot of uninterrupted sleep since the ventilator was removed.
We thank all of you for your prayers and support, and especially thank those who have left messages on the website; your words of encouragement have given us tangible evidence of all the people keeping us in their thoughts and prayers.
Please continue to lift Jon up before the Lord. While he is recovering well from the crisis of last week, we still don't know what the doctors are contemplating regarding the cancer that they found in his esophagus. We know that God's is at work, and trust him for Jon's healing. Ralph
At the end of another busy day we have a lot of things to tell everyone. We have felt the presence of God with us, and the comfort of everyone's prayers and well wishes, all day long.
Jon's lungs continued to clear all through the day; he is still working on it but things are going well. His readings on the spirometer have doubled since he started working with it.
The nurse removed several of Jon's tubes and IVs, with more to come tomorrow.
The results of the swallow test showed the stent was blocking any leakage and Jon was allowed to start taking clear liquids. He got to eat a popsicle and it "was amazing".
Jon's got to sit up in a chair for over an hour. He was tired after that time but happy he could do it.
Jon should be moving out of the ICU tomorrow; praise God for this progress!
This is all great news and everyone who visited today marveled at the huge improvement in Jon's condition; having him alert and talking to all of us was a huge blessing.
We met with Dr. Louie early in the evening and asked him what he could tell us about the biopsies and cancer issues. While the pathologists have not finalized their analysis, he had several comments that we believe show the hand of God in this situation.
First, the analysis of the liver biopsy showed that this was a dead tumor, contrary to what was expected.
Second, the reason they were thinking Jon might have testicular cancer that had moved to the esophagus was certain markers that were present in blood they analyzed earlier. These markers are not present in more recent blood samples. Dr. Louie was puzzled as to why those markers were there before and not there now.
While this leads them to maintain their conclusion that this is esophageal cancer, it does raise some doubt as to whether or not it has spread from the throat to other organs. Dr. Louie "assumes" that the dead tumor on the liver is related to the cancer on the esophagus but doesn't know for sure. Medically, this could be a very positive change.
We will get more information about what the doctors think in the next few days.
We serve an awesome God and nothing is to difficult for Him! We know that He is at work in this situation and in Jon's body; it really isn't up to us to figure out exactly what He is doing; we simply rejoice that He is at work!
It is impossible for us to express the joy that Jon has in the love that you are all showering on him, and in the presence of God he feels in his room. It is awesome! Ralph
We continue to praise the Lord for the removal of the ventilator. Jon is in good spirits and resting comfortably.
Jon had a pretty busy night, working at clearing fluids from his lungs by coughing. He also had several sessions of physical therapy to help loosen the mucus. He now has a spirometer, which is a device that measures how much air volume he can exhale. He needs to use this 10 times per hour to work on increasing the depth of his breathing.
Dr. Louie stopped by on rounds and said things were looking good; the main concerns at this point on his recovery from the surgery and infection is that Jon has an elevated white blood cell count which indicates continued infection and his left lung is still not working properly.
The order of the day is as follows:
Please pray for healing of his lung and any infection and for success on the goals for the day. And of course keep
praying for healing of the cancer.
We are truly blessed to have so many people lifting Jon and us up before the throne of God; your prayers are being answered!
Praise report: Jon has just been taken off the ventilator. Thank you for all the specific prayers for this result; God answers our prayers!
They spent the afternoon (after the CT scan) slowly lowering the assistance he was getting from the tube. He needs to work on breathing deeply and coughing up the junk that is lodged in his lung and throat. They will do some physical therapy to help that process, using a mechanical device that will thump his back to gently loosen things up.
His left lung is still partially collapsed but should start working with Jon breathing on his own and the PT.
We just talked with the surgeon, Dr. Louie, and should have the results of the various biopsies to review and discuss tomorrow.
While we are thrilled to have Jon back awake (cracking jokes already!)and to be past the crisis of the last week, there is still a mountain ahead of him. Attention will now turn to figure out how to treat the cancer and to deal with the damage that has already been done to his esophagus.
Thank you for all your prayers for Jon and for us; many amazing things have already happened and we know that God has more in store.
Ralph
The IR doctor just examined Jon's left lung doing a bronchoscopy (camera down the throat into his lung) to look at a shaded spot that was on the latest x-ray. There was some fluid which he withdrew with the scope. They are going to take Jon down for another CT scan, probably within the next hour.
Because of the CT scan the time to remove his ventilator has been moved to later today.
Please continue to pray that any infection in Jon's body is defeated, especially in the lungs. Ralph
Jon had another good night.
Before we got here this morning they lowered the level of sedation to start the process of taking out the ventilator. He did become aware of them and responded to their questions with nods and head shakes. However, his respiration went to rapid and shallow and he affirmed that he was in a great deal of pain. They discontinued the process of taking out the ventilator for the moment, concentrating instead on raising his pain medication while keeping the sedation low. They hope to determine that he is able to breath without the ventilator but in severe pain, rather than still unable to breath on his own. He has some mucus in his airway and will need to be able to cough that out after they remove the tube.
Jon responded to us being here and talking to him; it was great to have him look at us and respond to our presence.
Please pray that Jon's pain levels will go down, that his lungs are clear of fluids and that they will be able to remove the ventilator later today.
We are so grateful for all of the messages that have been posted; they are a constant reminder that we belong to the greatest family of all and that we are loved. Please keep praying for Jon. Ralph
We believe in the power of prayer!
"I love the Lord because He hears my prayers and answers them.
Because He bends down and listens, I will pray as long as I breathe!"
Psalm 116:1, 2
24 HOUR PRAYER
Betty Heide, who organizes the prayer chain at Cedar Park, is coordinating 24 hour prayer coverage for Jon. You can sign up to pray for Jon during a 15 minute time slot (or longer) at a specific time each day. There is POWER IN AGREEMENT!!
If you would like to sign up you can e-mail her at [email protected].
PRAYER MEETING FOR JON
Steve and Virginia Bjorklund
have opened their home for a time
of prayer for Jon
Tomorrow
Tuesday, May 1
7:00-8:00pm
Bjorklunds Home
9015 188th St SE,
Snohomish, WA
Please come and pray with us.
Kids are invited also and if you let us know ahead of time we will have a sitter for the small ones. It would be great for the older children to see and participate with people praying for Jon. Please come by and join us. Call us at 360-668-3162 if you want to leave a message.
Thank you for all your prayers!
Lisa
Jon's temp has dropped to 100.6 on its own; a good sign.
Met with Dr. Louie just a bit ago; the pathologist from Evergreen and the one here at Swedish will be sharing slides and tissue to enable a coordinated analysis of the biopsies. Results probably won't be available until late tomorrow or sometime Wednesday.
We are going home soon to catch up on our sleep; tomorrow will be another busy day.
Jon is back in his room after the liver biopsy. The radiologist who did the procedure said that it went smoothly and that he was able to get several good tissue samples.
We had been concerned that the mass on the liver was abcessed but the radiologist was only able to extract about 2cc's of fluid with the needle. That is good.
Jon did not respond well to lowering his sedation so the plan now is to leave him on the ventilator overnight and tackle that challenge tomorrow.
He has spiked a fever (about 102) since returning to his room and the ICU staff are working on getting that down.
Please pray that God will give Jon a good night's rest, control the fever and infection, and give him strength for tomorrow.
We are so blessed to have all of you holding us close at this time. Ralph
We have just been told that Jon is scheduled for the biopsy procedure at 2:00 this afternoon.
This is an IR procedure. Interventive Radiology is where a procedure is done guided by radiological images, such as CAT scans or ultrasound.
In Jon's case the radiologist will guide the biopsy needle to the correct site with the help of CAT scan images.
If all goes quickly and Jon is able, they will take the ventilator tube out this afternoon. If the procedure goes longer or Jon needs extra time to stabilize after the procedure they will probably keep the tube in until tomorrow morning.
Please pray for Jon and the medical personnel doing the procedure this afternoon. Thanks! Ralph
Visiting Information:
We are glad for all of Jon's friends, and for all of our family and friends, who want to come down and give us
direct support; it is a blessing. We love all the hugs and encouragement; it keeps us going.
Please be mindful of the following:
He cannot have flowers in his room because of the potential of contamination.
Jon is still sedated and on the ventilator. His liver biopsy is scheduled for later this morning and will take a couple of hours. They hope to get him off the ventilator later this afternoon if possible.
We are greatly encouraged by all of the notes that have been posted on the site. Andrew just finished reading all of them out loud to Jon; even though he is sedated he does hear us. Thank you all for your love and support.
Ralph
Jon continues to rest comfortably with good vital signs. He is still sedated and still has the ventilator. Please pray for another restful night in preparation for the liver biopsy procedure tomorrow. Ralph
Patti and I just met with Dr. Louie and he wants to keep Jon on the ventilator today; no use in going through the potential upset of removing the tube before doing the liver biopsy procedure. If Jon's vitals continue to show improvement that will be tomorrow sometime.
The other news is tentative at this point. Because it is very rare for a 26 year old man to develop esophageal cancer, and because of other incongruent factors Dr. Louie saw, he ordered an ultrasound of Jon's testicles and found a small mass there. This will be biopsied, along with the liver. He suspects that Jon has testicular cancer which has metastisized to his throat and liver. This would be good news because testicular cancer is significantly more treatable than esophageal cancer. Our oncologist at Evergreen was also considering this possibility and had ordered additional stains of the tissue to see if the cells had originated elsewhere. So we should know the answer to this tomorrow. We are encouraged by this potential good news.
Thank you all again for your prayers and love - it is so good to be part of the family of God! Ralph
Patti and I are back at the hospital with Jon. He had a good night with no issues. They tried to bring him off sedation and the ventilator before we got here and were not successful, this is normal and they will try later.
The first step is to bring the oxygen level in the ventilator down while watching that Jon's blood oxygen level stays up. This is progressing well.
We will post more after we talk to the doctor later this morning. Ralph
All of Jon's family has gone home for the night. It has been a long week; Patti spent the last 2 nights in Jon's room; Ralph the previous one. Please pray for a good nights rest for everyone.
Just talked to Jon's nurse and all is well, blood pressure is actually better than at the last update. He will be fully sedated all night which will help him in his recovery.
Thanks for all the prayers and concern.
Jon is back in his room and we have just been allowed in to see him. He still has the breathing tube and is heavily sedated. His vitals are good and he is resting peacefully.
Pray that the infection will be brought quickly under control so that further testing and treatment can begin.
Jon's surgeon, Dr. Louie, just came by the waiting room to tell us that the surgery was done and to tell us what they did and found out. They found that there was a perforation from the esophagus into the tumor mass, and also a perforation in the tumor mass leading into the left chest cavity. This allowed gastric juices, bile, and other yucky stuff to go from the throat through the tumor into his chest cavity. The stent should block that now.
They sucked heavily infected fluid from the tumor itself, and about a liter of fluid from the chest cavity.
They are still determining when to take out the breathing tube but Jon came through the surgery well.
Because they have stirred up the infectious material in the chest cavity things on that front are expected to get worse before they get better.
Thank you for all of your prayers and support.
Patti just got an update from the anesthesiologist – they have installed the stent and are now proceeding with the drainage procedure. Jon is stable and all is going well. They expect to be in surgery for another 2 hours or so.
Good morning!
Jon is great need of your prayers! His condition is very serious. We know that his life is in God's hands. They are hoping to do surgery at 10:30 to help alleviate the respiratory shutdown of his left lung. He has had a tremendous amount of fluid build up around his left lung which has made it very difficult for him to get sufficient oxygen. They also would like to insert a stent to block the perforation in his lower esophagus and if possible will try to remove infection/mass. Unless this surgery is done and successful, the doctors are not able to do any further surgeries or begin chemotherapy. Please pray!!!
God, restore Jon to vigorous life and health... Psalm 119:37
Not by might nor by power, but by my Spirit says the Lord Almighty...Who are you great mountain of human obstacle of cancer, you are made a plain. Zec. 4:6,7
Betty Heidi from Cedar Park's prayer chain is organizing 24 hour prayer coverage.
You can e-mail her at
[email protected].
Thank you,
Lisa
Hi everyone-
Thank you for your prayers on behalf of Jon and the Devin family. I know they feel your support.
This was an update from Barb Gopen as of Friday night:
We just returned (11:30pm) from Swedish Medical Center (First Hill Campus) at 747 Broadway. Jon is in Room 643 (East) in the Intensive Care Unit. Just as we were leaving, Grandpa Morris & Grandma Joyce arrived straight from Oregon. Patti & Ralph had just met with Jon's thoracic surgeon, an Asian man named Dr. Louie (spelling?). The doctor had done a 9 hour surgery today on another man with esophagus cancer.
The ambulance ride over from Evergreen was very encouraging for Jon & Patti. The critical care team who drove & rode with them were 2 Christian men. The care-giver had just finished a tour in Iraq. Jon thanked him for his service to our country. Patti felt like God had placed them in good hands with these 2 men. They always pray over their aide car before every shift. They said that Swedish was a great hospital with superb care.
Tonight at Cedar Park Northshore, Jon's cousin, Michael helped with the worship team, for the special "Power" service. The main speaker had special prayer time for the sick and during it he had a word for someone in the audience who had a relative with cancer of the esophagus! He prayed for that relative! Michael called his mom, Ralph's sister, and encouraged us with this story!
So far since his arrival, Jon has had an x-ray of his lungs. There is a buildup of fluids around the outside of his lungs, which is a concern to the doctor. He wants to operate on Jon in the morning and remove any cancer he sees, plus cleanout the areas of infection around his liver and his esophagus. Before the surgery, Jon will have another CATscan, as long as he can lay flat. This has been difficult for Jon, as he needs to sit up in bed in order to breathe without pain.
Jon has asked that Patti not leave his bedside, so she is spending the night again. (She really needs sleep.) Ralph is staying as long as he is needed. We drove Andrew home. Chris is flying out in the morning for his interview with the church in Calif. He's coming back Monday morning.
The surgery tomorrow will probably be quite long. And then he'll be in recovery for several more hours. Then he'll be in the hospital for several more weeks. No mention yet of when they'll begin chemo. There's always the possibility that the surgery could even begin during the night if they think they need to open him up and get at that infection sooner rather than later.
For the angel of the Lord is Jon's guard; he surrounds and defends him. Psalm 34:7
Lisa ( [email protected])