Monday, January 11, 2016

Update

Hello Friends!

I know I haven't posted an update about Dan in awhile, but when things keep changing...it's sort of hard to know just what exactly to post. Without further ado....

1) What in the world is wrong with Dan?
That seems to still be the question of the moment. On December 20 and 21, Dan had a low-grade fever each day (after being outside at judging practice in cold weather for 8ish hours). On 12/22, he had a lumbar puncture to check on the progress of getting rid of the lymphoma in the spinal fluid. That day, he started developing an HSV (herpes simplex virus) on his upper-lip, and it started swelling (but no fever). We drove to Iowa. By the time we got there, he had a fever of 101-something. He took Tylenol that night, but in the morning had a fever of 102-something. That day (12/23), he was able to be seen by my cousin (a PA at U of I clinics). He got on an antibiotic and steriod. He had no fevers the next 3 days and looked/felt better.

On the evening of 12/27, he started running a fever again. He had a fever from then until this past Wednesday (1/6). The first few days, he could break them with Tylenol. On 12/31, we went to the ER in Ann Arbor based on the recommendation of the on-call doc. At this point, Dan's left sinus was swollen visibly, and he "smelled" like an infection. [Don't ask me how, but the nose knows!]
The ER doc ran all sorts of blood work, chest x-ray, and a blood culture on his port - all came back negative. So, he sent us away without anything. When I asked him about a possible sinus infection, he said, "As a medical community, we overdiagnose sinus infections. I don't want to prescribe anything for that until he's had symptoms for about 14 days."

...okay. Well, the next week was HELL. Dan had drenching night sweats and was exhausted. Guess what? His blood work from Tuesday (when we met with our doctor) shows that the EBV (Epstein-Barr virus) is back again. For the last four months (since mid-September), those numbers had been so small, they wouldn't register on tests.

So, back to the question...what is wrong with Dan?

Our doctor is trying to figure that out and also trying to figure out the next/right/optimal course of action. Please pray for her. Dan likes her (which is a first), and I know she is trying really hard; please pray that God will give her insight (and that she's open to some leading from the Holy Spirit).

With this latest round of infection, Dan's white blood cell count, platelets, etc. (the blood work) look like he did when he came to UM in August (and after the hospital stay in September). The t-cell count in his spinal fluid is lower (good)...but, what is really wrong? Why the recurrence of EBV?

She thinks he may have hemophagolymphohistiocytisis (HLH). The way I understand this is it's where his immune system totally over-reacts to any infection. To know for sure, she is going to need to have some genetic testing done.

2) How is the lymphoma treatment going?

Good? The t-cell number in the spinal fluid is going down. Tonight, he has a PET scan to see if there are fewer/more hot spots than in August. Please pray for there to be fewer. Please God, good news! I don't know if we will have the results by Friday when we meet with Dr. McCoy again.

3) So, what's the treatment plan?

Currently: Dan is getting chemo once a week (Fridays) of etopycide. This is the chemo that makes your hair fall out, so the growth that has been coming back will be gone again.

But you know what? God numbers the hairs on our head - and He knows how many will be lost, and also He can make it grow back again, and he'll still know how many hairs there are.

4) And next? Honestly, who really knows?

We met with the bone marrow transplant (BMT) doctor on Tuesday. It is currently too early to tell if Dan will be a good candidate for this because he still has the abnormal t-cells in his spinal fluid. In the chance that he is, they are starting the matching process.

A few of you have expressed a willingness to get tested. They only request tests from full siblings because of it is more likely that they will have the similar genes/DNA. (Remember I'm not a doctor or a science major; I'm an educator, so I may not get the specifics right.) They don't even take a specimen from parents because you only have 50% of DNA from each parent. In the event that siblings are not a match, the search moves to the bone marrow registry. IF you are willing to be a registered bone marrow donor, then you can visit 'Be the Match' and start the process. If you are already in the registry, then you don't need to do anything special. If you match up with Dan, they'll contact you.

The BMT doctor recommends that Dan's case be looked at by the immuno-deficiency team, since it seems like there is a larger issue with Dan than simply lymphoma. If it was just lymphoma, then (my understanding) is that he'd be doing much better than he is.

5) ....and, you, how are you?

This is probably a post for another day. Currently, I am doing well. Last week was really rough, but I had a good "counseling session" with my chiropractor, which really turned my perspective around.

Many of you express a desire to help - and I thank you for that. Often that's followed with, 'You just tell me.' Here's the deal with that: I probably won't...and it's nothing to do with you, personally. It's just that I don't think about that until I'm overwhelmed.

So, if you want to help:
a) Make us food. (preferably healthy good, btw) Preferably on Thursday or Friday nights when we're traveling with chemo.
aa) If you don't want to burden us with too much food, then someone start a "meal" sign up, so it's organized.

b) Call Dan. Invite him to do stuff. Get him out and get him talking. He really wants to see 'The Revenant' (like he talks about it all.the.time) and I really do not. By the way, if too many people call Dan on a given day, he may not answer; he gets tired answering the same stuff over and over, again. Keep it fresh.

c) Call me. Invite me to do stuff. Get me out, and get me talking about Jesus. I mean it. Raise me up; get my view off the current trials and tell me about the glories that far outweigh them. Tell me about what is going on in your life. It is not frivolous. Get me out of myself.

...but above all, don't wait for us to call you. If we are on your mind/heart, pray for us, and let us know. We need to be daily reminded that God is for us. Don't wait for us to reach out because the only people I'm willing to be crazy vulnerable with are my parents and Dan. I just don't like crying or being ridiculously, irrationally emotional around people...yet. It's not personal; it's just me.


5 comments:

Amy Kies Bautista said...

Jessica, we pray for you and Dan every night, right after God Bless Great Grandma Ellen! You are definitely thought of and prayed for. Big Hug!

pjcolando said...

Larry said, "Wow! Is she an awesome person" and I agree. Thank God for your writing gift, as well as your faith in Him, and love for Dan. To be able to write it out is a special kind of salvation.

Dan is an awesome person, too, because he is living inside this trial, while the rest of us are on the outside.
His strength of spirit is only matched by yours. We know of no two other people who could continue to praise in the midst of this Job-like nightmare.

LOVE, HUGS, and more of each, over and over and over again. Sooo sorry we couldn't come to visit in October.

Patty Jowell said...

You are both in our, and ME sharing group, prayers. Thank you for letting us help, prayers can bridge the distance. God bless, comfort and heal you both. Love, John and Patti Jowell

Patty Jowell said...

You are both in our, and ME sharing group, prayers. Thank you for letting us help, prayers can bridge the distance. God bless, comfort and heal you both. Love, John and Patti Jowell

FACS Education Advisor said...

You are both thought about often and missed! I don't know how I missed this post earlier. By the date, I think I was worrying about practicing my last lecture and packing so I could get the heck out of Dodge.. Let's make plans to talk soon! You are loved!! Dan, too!