Stale or fresh

(From Daniel):

Who would like old, stale food? Not me, I would want my food to be fresh. Well, this week the company from which we order my good blended food messed up the order, and because of the US long weekend, it leaves me three days short of food. Instead of eating the hospital "bag-O-nonfood," Evelyn has and will be making fresh real food for me. I had it for breakfast today at 6am and I've felt so good this morning. 

Lamentations 3:22-23 ESV (read all of chapter three):

"The steadfast love of the Lord never ceases; His mercies never come to an end; they are new every morning; great is Your faithfulness."

Every day God gives us His fresh buffet of His steadfast love and mercies that will not end. Yes, great is Your faithfulness, my God. 

More prayer requests:
Complete healing
Bed sores
Weight gain (there were days last week I could not keep the food in me for long)
Evelyn and family

Thank you for your prayers and support. It means so much to us to know you're praying for us.

Daniel 

What's "normal" anyway?

(From Daniel):

It's so nice to have my family come visit. I enjoyed feeding Kezia lunch. A little bit of the old normal.

 

I have a possible infected IV site, and it hurts. It's worse than the last one. So I'm going on antibiotics and going for oral rather than a new IV.  It will probably take longer though. The IV site before had a small infection, and it on average takes three painful tries to start a new IV. It brings me to tears just thinking about it. I'm thankful that I don't need one now. The doctor also reduced how often I get blood work. I'm thankful for this as well. And I'm so thankful that my nausea is gone. 

I want to make the most of whatever time God has given me. So, do I wait for better circumstances? No, I'm going to do the best I can with what health God provides. I do not know what comes tomorrow; that's in God's hands. My goal is to serve Him the best I can today. 

More prayer requests for us both:
- Strength
- Sleep
- Wisdom with decisions
- We miss each other a lot and doing family life together.
- Bed sore heals (Dan only)

Thank you for your prayers and support. It means so much to us to know you're praying for us.

Daniel  

(From Evelyn):

Over the past week, we have been trying to tackle Daniel's nausea, still not knowing what was causing it. It seems to have largely abated now, and he has switched from the IV anti-nausea med to the oral version.

Then the bed sore appeared because Daniel was mostly bedridden for three days last week after the throwing-up episode. While we are thankful that that is the first sore he's gotten all this time, it is still concerning. Daniel is treating it naturally with a few things, so please pray they are effective and that the tissue heals without getting worse. It has already gotten better in the past few days, so we are very thankful for that. 

I also suggested to Daniel that he start on another complementary supplement which I was just told about last week. After doing a lot of research and reading many journal paper abstracts, I brought it up to the doctor, who was very open to it. This supplement, fulvic and humic acid, can potentially do a lot. We're just going to see if and what God wants to do through it. The results, as with EVERYTHING we're doing, are always up to Him! Please pray God will choose to use it to improve Daniel's immune system, blood system, and digestive system. As with a lot of natural supplements, because they generally don't override the body's systems (like drugs do), but instead they support the body's processes, seeing improvements can take a while. Please also pray God will continue to sustain Daniel through this. 

Our goal is to be diligent with the wisdom and resources God gives us. What He chooses to do with them is up to Him. I wish I could do more. But I need to be where I am -- in a place of intimate dependence on God. His will be done, and may He be glorified. 

The past several days, I've been reading and reflecting -- and praying -- through the Gospel of Mark. Jesus' character and power is so amazingly on display. (What a gift that God has given us not one, but FOUR, accounts of Jesus' life and ministry). To be honest, I've never been so keenly interested in the healing accounts. And while they don't hold any prescriptive power or promise (it's not that type of genre), they do tell us that Jesus is a God of compassion, and mercy, and grace. That is Whom we serve and seek to glorify, and we continue to boldly, yet humbly, make our requests of healing known to Him in our dire circumstances. Please continue to join with us, and let God change you in the process too.

Evelyn

Update on past days.

(From Daniel):

Each day is a gift from God, and I will praise Him for who He is and what He has done, no matter how the day goes.

Well, yesterday was a challenging day. I was throwing up through my mouth and nose. My mouth started bleeding because of the trauma too.

My old IV site was infected and couldn't be used. The new one took three tries. The third try was with a larger needle on the inside of my forearm.

I was blessed by God to have my wife, Evelyn, there. She is not often here at that time of day.  She was so helpful holding my hand and singing songs of dependence on God.

We needed the IV for a new medication to help with the nausea, as well as another dose of the pamidronate. Pray the new IV lasts a long time and does not get infected and that the new medication will work.

Today was a much better day. We are working on getting me back on schedule with my tube feeds. I had to skip a few meals yesterday because of how bad I felt.

I am trusting God with each step. This is hard, but I will not fear for He is with me.

Thank you for your prayers.

Daniel

God is in control

(From Daniel): 

Today is a new day that God has made; I will rejoice and be glad in it. I have been growing in my thankfulness for life. Our lives could be long or short here on earth but our lives don't end here. Our time here is like a dot on a page, and eternity is an unending line. What do we live for -- the dot or the line? This idea is from the great book, "The Treasure Principle," by Randy Alcorn. 

 - Matthew 6:19-21 NASB

  19  “Do not store up for yourselves treasures on earth, where moth and rust destroy, and where thieves break in and steal.   20  But store up for yourselves treasures in heaven, where neither moth nor rust destroys, and where thieves do not break in or steal;   21  for where your treasure is, there your heart will be also."

I'm continuing to change my thinking of "I wish I could...eat and taste food, live with my family, not be in pain, be well again, etc." to thank you God for all the time you gave me to have or do these things. Every day is a challenge to do this and to remember. It's a good thing that being a Christian isn't about me and my ability to perform. It's all about God doing the work in me and working on making me become more Christ-like in the process. And all through this, still praying for healing and for endurance for each day. 

 - Job 1:20-22 NASB

  20  "Then Job arose and tore his robe and shaved his head, and he fell to the ground and worshiped.   21  He said,
'Naked I came from my mother's womb,
And naked I shall return there.
The LORD gave and the LORD has taken away.
Blessed be the name of the LORD.'
  22  Through all this Job did not sin nor did he blame God."

I feel tired and worn. This has been the hardest year of my life. So many hardships and trials. Through all of this I have been given strength and courage by God for each day. His faithfulness we can trust. 

I'm planning to go home to visit this Sunday, and I'm looking forward to this. Pray I have the strength.

Thank you for your prayers.

Daniel 

 Evelyn and Kezia visited today while Josiah was treated by some friends to a fun day at a soccer game.

Another visit home and a good conversation

Last Friday, Daniel had a great visit at home. He had the strength to even get dressed in "normal" clothes, and stay at home for two hours. In amongst a lot of resting, he was even able to climb the stairs so he could rest in bed. The kids really enjoyed Daddy's visit. I've never seen Kezia snuggle so long with anyone, and without squirming at all!

Sure, the visit tired him out, but being in the morning -- when he has the most energy -- helped out a lot. He wasn't as dead-tired for the rest of day like the first visit. Praise God for these blessings!

As far as the medical side of things, Daniel needed another dose of the pamidronate for the hypercalcemia, but hasn't needed another transfusion, despite several small bleeds. He did need a new lancing today on the other side of his throat. It seems the area is still swelling larger very slowly. This is discouraging, but God knows what is going on on the tiniest molecular level. We choose to trust Him!

We had a particularly meaningful conversation with Daniel's nurse yesterday evening. I've spoken with her before at length about Daniel's care and treatment plan, what with all of its unconventionality. She was adamant that everyone who has a g-tube should be on what Daniel is eating, and everyone in general should be given fresh food, not canned and processed remnants. That's when they need the best food the most, she said.

She said in her 14 years as a nurse, she has never seen someone like Daniel and I take responsibility and advocate for ourselves. No, our plan certainly does not come cheap, but by God's grace and amazing provision, we have no worries right now. And the nurse said how much better Daniel is doing than others on the ward who don't have such a serious condition, and who won't or can't walk because of the pharmaceutical pain meds and lack of nutritious food.

I'm not casting blame here -- please don't misunderstand me; all I'm saying is that the healthcare system, when it really comes down to it, is all about economics. The individuals, however, the doctors and nurses, etc., are the wonderful personal side of that system. They do their jobs amazingly, by and large. And we are so very thankful to have universal healthcare and not have to pay a fortune for all of the care Daniel needs. But the underlying bureaucracy is the impersonal numbers game.

That's why you'll never see the things Daniel and I are using covered by medical. We spend over $100 a day on his meds, food, and supplements. I hate having to spend that kind of money (as we're both so frugal) but it's so very worth it -- look how well he's otherwise doing. I told the nurse that we have been so blessed by God through friends, family, and strangers, and are striving to be diligent with the wisdom and funds God has given us to make the best choices. The results, I said, are up to God, because the point of life isn't to be happy and healthy, necessarily, but to bring glory to God. And that is what we're trying to do.

The nurse started to get choked up when she reflected on how Daniel's situation is affecting the nurses. Given our situation, our young age and young kids, and the severity of Daniel's illness, it's hard on them, though she said, granted it's nowhere near the same intensity as it is for us. But we got a window into what God is doing in the care team. Please pray that God's purposes would be seen in those individuals who do all of the work to care for Daniel day by day. We only have this ministry opportunity because Daniel is so sick.

Our prayer is that God would display His power in an amazing, unmistakeable, miraculous way by healing Daniel, and in doing so would confront the individuals on the care team with His existence and His claim on their lives too; building the faith of those who know Him already, and breaking down barriers built by those who don't truly know God.

We are thankful for what we see God doing in our own lives and in others. That gives us joy despite all of the pain. All the same, we cry out to God that He would finish with His purposes in this season soon and bring healing and restoration. Please continue to join with us in prayer. Thank you so much.

May God be glorified.