Tuesday, December 17, 2013

Cautiously Optimistic

When my mom was diagnosed with cancer (again) and started treatment the plan was for six rounds of chemo, three treatments each round, three weeks apart. She recently finished her sixth round and yesterday she had her CT scan and oncologist appointment to determine where they were and if they needed to continue more treatments.

The last time she had a CT done the doc told her that they were making progress but not as much as she'd hoped. Mom has still been running low grade fever between treatments (a sign of the Hodgkin's disease) although it seems to not as bad as before. Frankly, I had no hope of her treatments being over and was hoping for 2-3 more rounds instead of another 4-6. Mom and Dad were thinking along the same lines and came to Jackson yesterday prepared to stay for a late treatment and come back today and tomorrow.


She's done. She'll go back in two months for anther CT because there are still two spots in the lymph nodes in her abdomen but they haven't changed since the last scan two months ago so the doc believes they may be "residual" spots, either dead lymph nodes or scaring or shadows or something that is not cancer. If those spots show any change during the next scan they will likely start more treatments. If not, they will begin the first year cancer-free checkups.

Holy cow. I did not see that coming.

My mom has been sick for a solid year. The disease started showing symptoms last January. Most of you know this is the second time she's had had cancer; the last time was earlier stage and concentrated in the thyroid. This time was stage four and spread throughout her abdomen and abdominal organs. The simple fact that six rounds of chemo seems to have knocked it out... I can't even...

I talked to Mom on the phone last night and then sat and cried because we are the most blessed people on Earth today. To beat lymphoma twice in six years is a pretty impressive feat. My mom is the strongest woman I've ever known.

Monday, September 30, 2013


Today is my seven  year wedding anniversary.

Which is awesome. I'm one of those people who truly loves being married to my hubby and I'm glad to see him every day.

I suspect we'll be together a very long time.

Largely because we have a rule that whoever runs away first has to take the kids.

Monday, September 23, 2013

Update on Stuff

You know what I hate? Baking stuff Luke can't eat. Like oatmeal raisin cookies. K loves them and loves making them. Greg likes them for breakfast to go. Poor Luke wants one so bad he can't stand it. The chocolate fudge GF cookie I gave him is obviously not as good.


Anyway, we're two days away from two weeks gluten free. His eczema is gone, except for a brief outbreak after we accidentally gave him some gluten laced french fries. His chronic diarrhea is still a problem but his pediatrician is finally taking me seriously about it. She thinks the gluten thing is over diagnosed and wants to test for a bunch of bacterial infection type issues. Three vials of blood and a stool sample later I'm still waiting on the last of the results. Should have those by Wednesday. Doc said to stay GF for now and eliminate as much sugar and dairy as possible. Not sure how I'll ever figure out what he's reacting to if I cut out everything at once, but I want him better ASAP so...

I wanted to test for the gluten allergy but it turns out our insurance won't pay for it unless it's ordered by a GI, allergy, or neurology specialist. Really? Really. So we can pay $250 out of pocket or we can go see a new doctor (and pay nearly as much on new doc visits).  I'm tired of new doctors. I'm tired of our old doctors. One thing at a time I guess. If none of these tests come back positive then we'll move on to something else.

His early intervention evaluation was last week and that was a disaster, but he should be starting in-home speech therapy within a month. Therapist hasn't actually called to schedule yet so we'll still be going to UMC for therapy in the  meantime. I swear over the weekend he said "turn it off" (regarding the light) and he still tells us "hereyougo" every time he hands us something, so maybe he's skipping words and moving straight to sentences?

Thursday, September 5, 2013

Now Here's a Dilemma

Dilemma #1

Do you hope for a undesirable result just have an answer, or is it better to not know what's going on, but know it's not THAT?

Luke's EEG is scheduled for Monday, so by Tuesday we'll know if he's having seizures. If he is, I'd bet money he had on Monday night and that it was the second one since the possibility was mentioned two weeks ago.

So I don't want that to be the answer, but I want to know what's going on with him. If not that, what? Can't work on something if we don't know what it is. There are reasonable answers for all the weird things we've noticed except the speech and motor skill issues. I don't know what result to hope for here.

Dilemma #2

My mom started her second round of chemo yesterday. My cousin, who I haven't seen since my grandmother died two years ago, is going to be in Philly this weekend. Do I take the kids? Last time we did that Mom ended up in the hospital, but she swears it wasn't because of the kids and that her doctor said it was ok. I'm torn between going and not going. Mom wants us to go because she misses the kids. This is kind of a no win for me.

And you know what I've realized? This blog has become all about my mom's cancer and Luke's mystery issues. I need to work on that. But to be honest, those two issues pretty much sum up most of what's on my brain these days.

Monday, August 26, 2013

Bad to Really Bad

So my mom wanted to see the kids this weekend and we packed them up to keep her happy. 

Sunday morning K starts running fever. I throw Tylenol at her and start packing up like a mad woman. The last thing a chemo patients needs is to snuggle with somebody who has fever. 

Today we saw the doc and K likely has hand foot and mouth. Great. Luke has a nasty sinus infection. Also great. I went to let my mom know and she's at the cancer center waiting to see an NP because her fever spiked last night. 

I just got word that they are admitting her for extremely low white blood count. 

I can't even go see her because I'm a giant carrier monkey. And I'm completely ignoring my scratchy throat because I absolutely cannot deal with that this week.