Well, I may have succeeded in making my entry short but evidently I still have the date wrong for the concert…Sorry! I need to just let everyone else handle that and concentrate on my responsibilities. Lately I’ve been doing good to just keep up with all the doctor appts. and get out of bed…haven’t felt well…working on that! So, what I’m told is it is Saturday March 24th…check Naomi’s facebook for the correct details. Hope some of you can make it as I think it is going to be a great evening of worship. Joshua may bring a surprise to the concert as well. No more said.
Love to you all,
Just wanted to let everyone know that we did stay home from Chicago this week because of Joshua’s sleeping/tiredness issue. We see the physicians assistant tomorrow and are also checking into an a-pap machine as we’re thinking sleep apnea (which he was diagnosed with in Chicago) may be the culprit. The med (Decadron, which hypes you up, interrupts sleep, and masks your tiredness kept him on an unhealthy non sleeping schedule for almost a month). He went off it a couple of weeks ago and we think he hit the wall physically. We’re hoping that’s the issue, so we’re moving in that direction. Pllease pray that the Dr. will have the wisdom to assess him correctly. It’s good we didn’t go because both Naomi and I felt terrible today as well and had issues we had to work out with the doctors. We all needed a week off. The Lord seems to always have all the necessary details worked out…amazing!
Also I want to mention that I made a mistake in my last update about the date of the benefit concert for Joshua. It is March 23rd at the little theater at Washington High School. It will be a night of worship in song by Bobby Calquon (Spelling?) and he has an amazing story that will intrigue and inspire you. And Joshua may even sing a son at the end.That would be so nice as he hasn’t sung in public for a very long time.
I did it…Short and sweet…well at least short!
Love to you all,
I’ve been contemplating tonight whether to write or wait a few more days, but I decided too many things can change in a short period of time and that will just make my update longer…and we know that happens easy enough
As I mentioned in my last update, the week of the great announcement was balanced with a few harsh realities about the nature of Joshua’s illness requiring Tarceva for his whole life and his spine potentially never healing to the point where he can get back to a lot of the things he enjoys…working out, playing a game of soccer now and then, hiking with backpacks on his back., goofing around with the grandkids, friends children etc. Just all the things you do when you have a normal 32yr. old healthy back. While it was a blow we have discussed that we really don’t know what God has in mind and we want to be open and willing to accept whatever He decides Joshua needs, to bring about the greatest amount of spiritual, relational, and emotional health which will ultimately enable him to carry out God’s calling on his life, whatever that is. You’ve probably noticed that the above statements carry with them a lot of unknown. And waiting and trusting are going to be the name of the game. Never easy…but what worthwhile ever is?
These are our hopes and desires: That once all the cancer lesions are gone and we’re left with only potential dorrmant cells,, that we can continue in a process to reduce the Tarceva until it’s gone. And then that his very healthy body and interior environment will be a place where cancer cells cannot exist. This has been done by many others, simply by diet, and others with the intitial chemo and then the diet. It would be great if Adenocarcinoma were the type of cancer that goes into remission and a statement of the body being cleared of any cancer at all was a possibility. But it isn’t. However, if we can keep the cancer at bay with his diet or even a combination of diet and a very low dose of Tarceva (one of Dr. Wilbur’s patient has a maintenance dose of 25mg), we would be very happy with a ‘practical healing’. Biut as I mentioned, who knows, God may choose to touch his body in a supernatural way and totally heal him. We would not be opposed…how gracious of us, huh?But if God asks him to keep this thorn in the flesh for his benefit, then he wants to be at the place where he is willing to accept what God has for him. Though there are the disappointing and difficult days, that is the nature of his faith…and of all of us as a family, thank heavens, so we can support him no matter what.
So today we both went to see a pulmonologist together…actually for me this time, (I’m sure nice for Joshua for a change) because they saw some new spots on my lungs that were not there 7 yrs. ago when they checked me out and decided I most likely had scar tissue from fungus in an area or infections I previously had and wasn’t aware of. (Just what we needed, huh?) Actually it WAS just what we needed, because this Dr. (Dr. Cowden if anyone in the area is in need of a pulmonologist for any reason) is by far the best Dr. I have ever gone to. I remember that Rick and I had liked him the first time around, but this time reinforced the fact that he should be cloned and put into every specialty there is. He is very professional and thorough but is so in tune to how your specific situation is affecting you emotionally as well, and he addresses it and tries to make you feel as cared for and safe as he possibly can. And he LISTENS and responds to your concerns as if it is actually very important…you know those qualities you hope or most likely wish your doctors had. So, after he gave us his best scenario as to how we should approach things, he also gave a great deal of reassurance that he would be surprised if the changes turn out to be cancer. Rather, he feels we are probably looking at more of the same that we saw and monitored for two years back 7 years ago, coming to the conclusion that what I had was benign. So, we’re going back in 6 weeks to check in again to look at a new scan to compare. He really quenched any fears I may have had and has allowed the kids to take a big sigh of relief. Our imaginations couldn’t even go to that potential possibility!!
But the neat part about Joshua being there with me is that we realized that he should probably have a pulmonologist also, and he is very excited about seeing him as one of his doctors. Yeaaaaah…we’re finally in good hands with both our oncologist and pulmonologist. What a relief…we can relax and trust that they really do know what they are talking about and they have time (even though they are very busy and sometimes rushed as well), to see us as real people who are going through difficult issues and who need not only reassurance but information that is consistent and mutually discussed and agreed upon. It’s sad that it’s quite a novelty to find those qualities in the medical community at large, but we’ve found when you take an active role in your care and are not intimidated to speak up when you have questions or disagreements, you can eventually find the right people or make a difference in the kind of care you’re receiving. So, we see God taking care of us in the very small and the very important ways. And we are thankful.
As for prayer, I mentioned a few things above. One other…Joshua spent weeks on some medication that he’d taken in Chicago and when we first got here that made it very difficult for him to sleep or rest. He was getting up at 5:30am and juicing etc. and going through his days and then getting to bed later than he should, but unable to sleep when he did. Well he is off the meds now and I’m guessing because of the build-up of too little sleep for those weeks, he can barely keep his eyes open now. He’ll fall asleep mid sentence, while he’s on his IPad or telephone, sometimes with his arms still in the air doing whatever it was he was doing. Without trying to nag him ‘too much’, I have been encouraging him to just sleep until he feels he’s caught up…not getting up early (which means he misses mass which he doesn’t like) until he gets through this period. We also thought it might be his body just really working hard to fight the cancer, which I’m sure is part of the picture. It’s actually a little humorous and then becomes a little weird. So, for now he’s trying to catch up. Please pray that he does or we find out what is causing such extreme fatigue that he cannot hold his eyes open if he’s sitting.
He also just started Spiritual Direction with our Priest and he’s excited about that, so the timing is a little inconvenient for the physical exhaustion, but I’m hoping this won’t last long. Pray that his time with Father Dave goes well and he’s able to be consistently well enough to go and actually find the time to complete the exercises that they’ve decided to work on. We’ve got three busy weekends coming up, so he’ll need all the strength he can muster. This weekend friends in the production business are going to come and film him to make some kind of video presentation…not exactly sure about that one. Next weekend is a benefit concert for him. And the following weekend we go to Des Moines where he will receive an award for his work in the peace movement along with a Bishop who will also be honored. That should be nice…pray that his health is good enough for him to go and enjoy the evening.
I so wish we could thank each of you personally for all that you have done and have given to us, but it is virtually impossible. If you’re one of the fortunate few that I have been able to get thank you’s out to consider that another miracle and a special blessing and commendation from God. Joshua reminded me the other day as we were talking about the many financial gifts large and small, how meaningful each one is and our prayer that you will be blessed, that there is a promise in scripture that I taught the kids in song when they were little (so they could remember them easier) that says just that. I’ll close with the song.
“God loves a cheerful giver, give and it will be given unto you
A good measure pressed down shaken together, running over
will be poured in your lap,
For with the measure you use, it will be measured to you
For God loves a cheerful giver!” (Luke 6:38)
You have all given to us with such joy and gladness and generosity,
We pray you’ll receive blessings pressed down, shaken together, and running over into your laps…More than you can hold or imagine.
All our love and gratitude,
Kristi, Joshua and family,
For some reason I can’t click on these to make them bigger for you, but if they’re hard to see and people want them posted bigger, just leave a comment and I will also post them at a bigger size.