Transfusion

The recent blood work showed Daniel's hemoglobin count continues to be low. Also, Daniel needs his pamidronate (calcium med), which seems to have been missed last month. To make that med the most effective, Daniel needs more blood in his system so as not to tax his heart. So, he is just getting the second unit of three now.

 

Please pray that the transfusion will be highly helpful and the pamidronate will also be effective in alleviating some cancer-caused symptoms. 

Please continue to pray that we would see the progress against the cancer that we yearn for, signs that Daniel's body is getting better at fighting like it's designed to. Please continue to pray for special providence (which we've seen so much these last several months and beyond), and please keep praying for a miracle of healing. God is able; we just don't know what will glorify Him the most. In His infinite wisdom, He knows exactly what He's doing, and doesn't and will not ever make a mistake. 

Please pray for me as well. I am feeling so beyond weary, coordinating Daniel's care, trying to raise our kids with some semblance of routine and security, taking care of the household, and oh, yeah, me too. Yes, I'm working hard at being intentional to take care of myself too, but it is so hard when there are so many responsibilities and when Daniel is so ill. I know that the best way to take care of Daniel and the kids is to take care of myself. But how does that translate when I am so utterly emotionally and physically exhausted, yet the kids still need me and Daniel's care requires more phone calls and things done? I am trying my best (yes, in God's strength) to balance, but that doesn't negate the profound weariness and emotional anguish I struggle with. 

Agh, but I'm talking about me! This isn't about me! Daniel is the one who is sick and needs your persistent prayers. Please continue, friends and family. The relief and rescue that my family needs can only come from God, and we pray that He would bring healing and restoration swiftly, fulfilling His purposes in this intense trial. 

Thank you to so many whose service is helping so very much. 

May God get all the glory, for great things He has done and undoubtedly will do!

 

Results of the barium X-ray test are in

From Daniel:

The results of the barium X-ray test are in. I can drink liquids! They also tried thick stuff and I couldn't move it in my mouth, and what I did went down the wrong way so no food for me. 

Praise God, the specialist said I can have a milkshake! I've been longing for a milkshake for such a long time it seems, but there was no way to fulfill that desire. What do we do when we have desires unfulfilled; how should we react? 

I think the hardest part of this season is not knowing how it will turn out. So join me in trusting God, remembering that He is in control. He knows everything -- the end of all my days were written down before I was born. He is faithful. 

Daniel

Real family photo-taking where in every picture one or more of the following is happening messing up the picture:

• No one stays still. 

• Someone is blinking. 

• Someone is not looking at the camera. 

• Someone wants to see the photo before it's even taken.

• Someone is upset. 

Big update

From Daniel:

Today is a good day for me. I am so thankful to be resting in less pain. I have rediscovered how distraction is a great way to deal with some of the pain and discomfort and even avoid the stronger pain killers that can have painful side effects for me if I have too often. I've been enjoying listening to lots of Radio Theatre. 

The Care Team meeting went well; there were seven people there, besides Evelyn and I and Sandy. Doctors, specialists, home health liaisons, etc. My room was full! 

Our next goal is to make short visits home. One step is to be able to do stairs. So I've started stairs with physio. I was so sore that night and next day after the first time. People keep telling me I'm looking stronger each day. I praise God for the strength He gives. 

Another step in having short trips home is being able take care of my trach with cleaning and all the "just in case" cases. Evelyn is doing well with the trach training.  

Last week I had the second abscess lanced with great success. The doctor did it in my room, and Evelyn held my hand, and her and the doctor did a good job talking me through it. It's short term pain for a longer term gain. I now have a third abscess. The third and first  abscess (that had opened on its own but needs a larger hole to drain from) are going to be lanced today. 

A few weeks ago my tongue swelled more and pushed my front bottom teeth forward and very out of place. Painful and uncomfortable. Pain management has helped with this.   

I had a shower (first one in a very long time). It helped with the pressure in my ears and helped me sleep much better. 

The nose rinse is still helping a lot. It helped my hearing to come back and take away the pain I've been having in my ears.  

I am walking with just the pole or the advanced walker. I can walk short distances with help. 

The swallowing test went well, and we are waiting for a barium test in a few weeks. This means I can drink small amounts of ice water. I am so happy about this. Do you know how good ice cold water tastes? Feels? 

In the last weeks I've been able to have some good conversations with some nurses and I am finding a boldness to include God and things He has taught me. Evelyn did a fantastic job sharing our Christian perspective at the Care Team meeting. 

Praise God I'm sleeping better at night and my mind is clearer. 

I feel such a hope and joy deep inside it could only come from God. 

Pray that the cancer will go away completely. 

Thank you for your prayers, they are priceless. 

Daniel

Like the belt? :)

Praise God for little wins!

(From Daniel):

Thank you for your prayers. 

The doctor recommended a nose rinse to buy to help relieve pressure. Evelyn went and got it and it worked very well. It is giving me one less area that causes pain and pressure in my head. Praise God! 

Pray for my neck and ear pressure and pain to ease or just go away :)

Pray for Evelyn and I to have good sleep. 

 

We put all our hope in the Lord, the Maker of heaven and earth. 

Daniel

(From Evelyn):

Our days continue to be very long and tiring, on multiple levels. The CT scan on Thursday confirmed that the cancer is worse. But Daniel has been working so hard with physio, he is actually stronger than he was a month ago. Praise God for that! Still, he is very weak, and only 112 lbs. 

We have a meeting tomorrow late morning to update and discuss with the care team the plan and strategy. Please pray for wisdom. Daniel still needs medical care (a second abscess has developed and needs to drain), so we want him to stay put and not be moved to a less medical floor. 

And most of all, dear friends and family, please pray fervently that God would do what only He can do and bring full healing and restoration to Daniel's body! We need this miracle from God, by His wisdom and grace. Please pray that God would use whatever He would choose (primary med or just time), and show us His power swiftly and be glorified for it! We pray we would see God's work soon, as Daniel and I are both so very weary and worn with pain and suffering, each in our own ways. 

Our hope remains firmly planted in God and we believe He is able! The painful part is not knowing whether He will heal or not. But we DO know that whatever God chooses to do, He will redeem all the pain and suffering into something amazingly beautiful!

Continuing progress and prayer requests

Thank you so much to so many who are faithfully praying for Daniel. It means so much, and also tangibly helps too by the grace and power of God. 

Daniel continues to have good days and bad days, and many times both during the same day. He has accomplished more laps around the unit than ever (Saturday and today doing five laps!), and he's more alert more often. 

The challenges that he's facing are difficulty sleeping sometimes (which throws his whole day and affects so much), to an intermittent fever from the infection, to the swelling of his neck from the infection which makes his neck tender and sore, to swallowing difficulties, to still sometimes feeling panicked and needing meds for that (like just 15 min ago). Please pray for all of those things!

He's facing so much on top of the primary problem of cancer. Please continue to hold him up in prayer so that God may be glorified and strengthen your own faith by battling these foes for us. Daniel is being so diligent to do all he can to fight well; we cry out to God that He would bring the results we desperately need. 

A much-needed time in the sun on Sunday. Daniel has been hooked up to quite a few things, but he finally got a chance to be free for a little while. 

New trach, new lessons, new attitude, and now new praises!

The trach got changed this morning; that was not fun but all the will of God. I was about to head straight into a panic attack again, like when the trach was first put in -- not fun memories. 

God helped me calm down, and in the moment I felt a calm so deep that even though it felt like the waters were so turbulent above I could ride them out because of God's peace. I had two choices: to be selfish and think about how I can survive and fight even the people who are selflessly trying to help (because I know me and how my body is), or to trust that God is in control, relax, even no matter if it is good or bad. I am so thankful for God's faithfulness. 

The doctors and nurses are telling me my trach and abscess on my face are looking good (being better each day). I'm still eating by G-tube only because of my trach and my tongue. They are continuing to be amazed at how it looks. 

I'm trying to exercise a little every day, even a little with my tongue. I think it's helping me get more movement back. I am also working hard at physio with walking, body movement, and control. 

My abscess continues to secrete a lot of fluid, and seems to be draining the swelling around my face. It's not as tight as before. The doctor sent for cultures and then changed my antibiotic today to the specific kind that will kill whatever infection they found. 

Thank you for letting me sleep and not disturbing me as I sleep in the hospital. Visits are still appreciated, but my sleep is needed to get better. 

How great is our God who knows everything! His ways I will follow. Praise God for never leaving us nor forsaking us. 

Thank you dear friends and family for continuing to pray for my family and I. 

  

Daniel