Worse Symptoms, Possible Progression

From James:

Just when I think I have nothing to report, I end up with something to report.

Some of So Young’s symptoms started getting worse last week after the surgery (I don’t want to say which ones for privacy reasons), so I mentioned this to Dr. Holdhoff, and he prescribed a new medication to decrease spinal fluid pressure. He said her increased symptoms either indicate that the tumor has spread further down her spine or that there is pressure. I started her on the medication this Monday, and it hasn’t seemed to help much. Around the same time, she started to seem much more drowsy, going from maybe 16 hours of sleep per day to 20, I would say. She also became incoherent more often, and her speech was worse. I assumed all of this was due to the new drug making her tired. All of these symptoms continue to persist.

I told Dr. Holdhoff, and he said that the new drug does not cause fatigue. It is more likely tumor progression. We are going to increase the dose of steroids this week to see if it helps. Symptoms can increase because of an increase in the swelling of brain tissue caused by tumor progression. Steroids can reduce the swelling. If the steroids do not help, we would go back down to the previous dose.

Meanwhile, we start the third cycle of chemo tonight. I used to have a more sanguine perspective about the chemo, but that is wearing off, because Dr. Holdhoff said more directly a few days ago that her tumor actually became “slightly worse if anything” after the last two cycles, which he hadn’t stated directly before. (Or maybe he implied it but I didn’t get it. I’m not one for subtlety.) I believe the thinking now is that we are trying it as long as she tolerates it, but that it doesn’t seem to be doing a whole lot.

You may have noticed that the blog posts have taken a darker turn recently because of So Young’s deteriorating condition. I don’t read them to So Young anymore, although I do read the comments people leave, omitting anything that might imply something dire. I guess I’m saying that to let you know that the way I’m doing things has changed. I’m not going to sugarcoat a bad situation and I’m protecting So Young, although I don’t want you to think I am without any kind of hope.

We really appreciate your prayers and everything you are doing for us. You are living out Matthew 25:34b-36 in many ways, which says:

“Come, you who are blessed by my Father; take your inheritance, the kingdom prepared for you since the creation of the world. For I was hungry and you gave me something to eat, I was thirsty and you gave me something to drink, I was a stranger and you invited me in, I needed clothes and you clothed me, I was sick and you looked after me, I was in prison and you came to visit me.”


15 Responses

  1. So sorry to hear all this bad news. I think about all of you a lot. It is so tough being a caretaker but you do such a great job. Take care. Prayers and good vibes going your way.

  2. I wish you and Soyoung the absolute best. I had hoped to read better news tho. I send you prayers and wish you strength and hope in these times.

  3. One of my favorite songs I used to like to sing went like this Everywhere I go The Lord is with me, If I call upon him he will here me , never will I fear for The Lord is near, Everywhere I go I used to sing/recite during troubled times and no matter the outcome I always felt comforted much love and prayers for So young and you and your beautiful girls and your families

  4. Praying for both of you James. I think of you and how you are doing. I think of So Young also, and the kids. Just know that God is with you. Emmanuel.

  5. know that you guys are constantly in our prayers james, soyoung, and the girls…

  6. Let me know if this affects my plans to visit you in any way. I can be down there in a matter of hours.

  7. Thank you, James, for your regular posts. They give specifics for our prayers.
    Although I haven’t met you personally, I was rather sure that you and So Young were waiting to see the doctor last week when I was also in for a visit. Your Mom and I have been friends and prayer partners for several years and I have seen pictures of your family. You all have been lifted in prayer from the beginning and I am willing to help in any way. Just let me know what you need. Doris has my telephone number.

  8. I’m sorry to read of this turn for the worse. I’ll keep praying for a return to good health and for strength for you and your family.

  9. Thank you, James, for letting us all know what is going on. We continue to pray for everyone there.

  10. Our prayers are certainly with both of you and the girls.

  11. Praying for our mighty God to bathe your whole family in his extraordinary peace and for him to give you his strength. Marilyn

  12. I continue to keep you all in prayer. Our God is great and wise…He will strengthen and comfort you all with His peace.

  13. James — your strength, courage, hope, and support for So Young inspire me daily. You are both truly wonderful and amazing people. I was browsing pictures the other day and found one of So Young with our group at one of the Historic Half post-race gatherings. It brought a smile to my face. Please give So Young a big hug for me. All the best to you and the girls.

  14. James – Our thoughts and prayers are with you always.

  15. Hello, I am a runner friend of So Young’s. I did the Marine Corps Marathon the same year she did. I wanted to say my thoughts/prayers are with her and you. She is a strong spirited women.

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