Saturday, May 31, 2014

This week:

Not much has improved since chemo on Monday. Daniel's swollen tongue has remained much the same, or even getting worse. It has however sloughed off some, even rather large pieces from the back of his throat, so we hope that will continue. That means his tongue is starting to heal in those areas. He had a lot more sloughing after his first round of chemo. 

An important answer to prayer is that we were able to get a portable suction unit, and get it covered! It's like what the dentist uses -- sort of. It helps Daniel with the thick mucous that he can't swallow. Since coming home, he's had to cough it up, but because it's so difficult to do so, he's been stuck gagging into the sink, which wracks his body and uses precious energy. 

So, I was able to contact someone, who talked to someone, who talked to someone, etc. and we were finally given a prescription and the home care nurse was given the go ahead to make all the arrangements. It's not a normal thing that's covered under the medical program. It was delivered earlier today, so hopefully this will help Daniel sleep much better, etc. 

A few highlights of the week were going out with a friend who invited me to see "Moms' Night Out"; it's a good movie -- I enjoyed it the second time too! We had a really good chat after the movie too. Thanks, Megan. 

Today, we spent most of the day at Timberline as a family. TR is holding their spring family camp this weekend, so we joined them for lunch and dinner, and went up to the Executive Director's house in between for the afternoon. We played a great board game and visited while our kids napped. I mentioned to Craig that the day has seemed like a mini vacation -- getting away from home and the feeling of always needing to be arranging this or organizing that, playing board games with them like we've done so many times, plus having wonderful food made for Josiah and I. Daniel and Craig even "jammed" on the piano and guitar before dinner, even though Daniel was quite weak. It was great to hear!

We are so thankful for the friendships, support, and encouragement from Timberline (among many, many others!). It was so great to see so many of you today. 


This Monday brings the third dose of chemo. We're hoping that it will be more effective than this last week. Otherwise, we'll be reassessing on Friday and likely deciding on tougher drugs, i.e. more side effects. The good thing is nausea wasn't much of an issue this week because of the meds, smaller dose of chemo, and only the one chemo drug. 

Please pray for no side effects and that we'd see more progress. Daniel is still unable to talk. It's been nearly two weeks now. Please pray that the swelling/tumour would recede as it seems to be getting worse. 

Personally, I've started to have to battle with feelings of anger and resentment toward God -- that Daniel just seems to be getting worse and has to suffer so incredibly much; that I don't have access to God's sovereign will to know what He has planned and what His timing will be. 

As hard as it is to deal with these feelings, I'm thankful I was able to recognize them immediately and start praying about them. Sure, that was happening at midnight-3am last night, so that only makes it harder, but I knew right away that I could not allow myself to stay in that place. Yes, God welcomes our honesty and our raw emotion. Of that I am so thankful. I knew I had the freedom to be totally honest with the Creator of the universe. I also knew that I had to take responsibility for those feelings and inform them with the truth of God's Word. 

After a lot of praying, crying, and processing, Daniel rubbed my back and I was finally able to fall asleep. 

Thank you for your continued prayers for us. They are the most important way you can help us right now. 


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