Hanging on by a thread

Things are about the same, but I know those of you reading this are all just waiting to know how things are going. There's really nothing new, except that Misty's slowly fading. She's breathing, but that's about all. She mumbles from time to time, but is mostly incoherent. From time to time, Misty will open her eyes and reach out, muttering something unintelligible. We tend to believe that she's seeing and talking to the spirits of people who are close to her and her family. We know that Misty is barely hanging on to life. We think the time she has left with us can be counted in days, if not hours.

Thanks to all who have showed up to visit Misty and called to express your love to her. Thanks for the help in taking care of the needs of my family, so that I can spend these final days and hours by Misty's side. Thanks for the prayers. Thanks for everything.


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It occurred to me that perhaps Misty has already received the greatest miracle of all. I thought of this brief passage of scripture today:

"And, behold, they brought to him a man sick of the palsy, lying on a bed: and Jesus seeing their faith said unto the sick of the palsy; Son, be of good cheer; thy sins be forgiven thee.
For whether is easier, to say, Thy sins be forgiven thee; or to say, Arise, and walk?"
-- Matthew 9:2,5

Going... going...

Misty is not doing well these days. Since she's been home from the hospital, she hasn't been able to keep anything down... or more like in. See, everything Misty eats or takes in through her feeding tube leaks right back out from around her feeding tube. Her bowels aren't moving at all--the nurses say they hear no bowel sounds. In short, food isn't moving through her intestines and she's getting no nourishment and very little moisture. Unless there's a miraculous change, Misty isn't going to last long like this.

Last night (3/28), a little after 11 pm, Misty collapsed. Her muscles completely gave out and she sank to the floor. I thought for a moment that this was the end for Misty, but then she took a ragged breath and moved her head. Her nurse and I got Misty into a wheelchair and brought her into her room. I asked Misty if she could see me and she responded with very slurred words that she could see only black. Again I began to think that Misty was fading fast. I told her through my tears that I loved her and that if she needed to go, that we'd be ok. Suddenly her eyes popped open, as if to say that she wasn't going anywhere. I asked again if she could see me and she responded that I was "sparkly". We moved her from the wheelchair into the bed and got her comfortable. We thought for sure that it wouldn't be long. We brought in Paris and Cru (Paris was already awake, but Cru was sleeping). LeAndra was staying the night with one of her aunts, and calls were made to bring her home. Misty's nurse tried to take her blood pressure but her machine was unable to pickup a pulse. We sat with Misty, crying with each other and waiting. Misty's brothers and sisters all showed up as the night progressed as we all expected that these were our last goodbyes.

Around midnight, Misty seemed to stabilize. She returned to the condition she was in during the day--very tired, not speaking much, and mostly laying very still--but stable. The nurse was able to get a blood pressure reading which was low, but present. Around 3 am, many of us started dropping off to sleep.

By morning, not much had changed. In fact, now, more than 24 hours later, Misty is still about where she was. A little weaker, a little more exhausted, but still about the same. Again, without a miracle to get Misty's bowels pumping again, she can't survive long like this.

Home again

Misty got released from the hospital on Friday at around 5 pm. She's also been set up with some in-home nursing care through a hospice program. A hospital bed was delivered and set up yesterday, as well as some other things that will be helpful to Misty while she's so weak.

Misty's not feeling well enough to go to church today, so I'm staying home with her so that she isn't left alone.

Thanks again for all the prayers and everything else.

Doing better

Misty's intestines are finally cleared... sort of. After running the Drano--I mean, bowel cleanser--through Misty's system and seeing that there was still some sort of blockage, they tried the manual disimpaction. What they found was that there wasn't anything close enough to disimpact. So they next ran a gastrograffin enema, which is usually used for colorectal imaging, but in this case was used to help break up the blockage. A short while later, the broken up material passed.

At that point, her body was passing liquids without any apparent problems. But the results of a CT scan showed that something was still interfering with Misty's gastrointestinal tract--there was still a lump in her colon. So, just to be sure that everything that could be cleared out was cleared out... and (what I was afraid of) to make sure that the lump wasn't cancer that had spread to inside her intestines, they performed a sigmoidoscopy (a colonoscopy for just the lower part of the colon). What they found was... nothing. At least, nothing inside the colon. No blockage, no tumor. But... it seems that one of the tumors that's inside her abdomen is pushing on her large intestine, causing the constriction. So, the good news (and, yes, I'll take good news wherever I can) is that it won't change much for Misty, except that she's going to have to take stool softeners regularly.

Also, in the mean time, the swelling in her belly is returning--after just a few days. Because it looks like this will continue to happen (at least until her tumors are gone), Misty's doctor installed a drainage tube so that the fluid build up can be managed at home without a visit to the hospital. This evening Misty is still tender where the tube was installed, but otherwise ok.

So... to sum up this hospital visit: Pain under control? check. Bowels moving again? check. Swelling under control? check. It looks like Misty should be getting out of here tomorrow.

Feeling drained... (?)

Two gallons!! That's how much was drained off from Misty's belly. No wonder she was in pain!

So... the paracentesis went well. Last time (in January) it was very painful when the needle went in, and the doctor had to keep adjusting the needle to keep the fluid flowing, thus continuing the agony. This time it was painless. Misty was preparing herself for the torture and was surprised when the doctor told her that the stabbing was already done. The entire procedure went smoothly with no difficulties.

With all that fluid gone, and the pressure and pain with it, Misty is resting comfortably now. The next step is to get her bowels running again. The doctor has ordered an aggressive regimen of enemas and about a gallon of bowel cleanser (the stuff they prescribe for people who are preparing for a colonoscopy). Ultimately, if they can't get Misty's insides running again by tomorrow, they'll have to do a manual disimpaction--and we're hoping it doesn't come to that. Either way, we're expecting that Misty should be out of here by tomorrow night, or maybe as late as Tuesday.

Thanks again for the prayers and the visits, and everything else.

Deja Vu

Misty's back in the hospital again. This looks just like what she was facing back in January: her belly is swollen so big that she looks nine months pregnant, and she hasn't had a bowel movement in a week.

Since January, her abdominal swelling has come and gone several times--but not to this degree. So, when it started to swell almost two weeks ago we weren't that worried. We didn't want to go into the Parkland emergency room and face all that drama, so we put it off, hoping her body would once again take care of itself. After all, the only things that actually happened at the hospital last time were: abdominal x-rays and CT scans, several ineffective attempts at getting her bowels to move, pain management, and finally draining the fluid from her belly with a big needle. This time, we had the pain (mostly) under control, and we were trying everything to get her bowels working (really! everything! enemas, suppositories, laxitives, and even castor oil, and and old mexican home remedy involving garlic cloves). The only thing we couldn't do at home was stick the needle into her tummy and drain it. As her belly kept getting bigger, the pain increased.

We decided to call and talk to Misty's palliative care nurse and see if they could perform the paracentesis (that's doctor language for the thing with the needle in the tummy) in the oncology clinic without having to go through the ER. She recommended going to another hospital, Saint Paul, just down the street from Parkland where Misty's palliative care doctor also works. We got into St. Paul's ER at about 9:30 am today (Saturday...I guess it's Sunday now since it's after midnight) and they almost immediately took her into an exam room. We got her there just in time, because her pain started to spike shortly after we got there. We explained the situation, and got Misty some heavier pain killers in an IV. They told us that they can tap her belly if she gets admitted--they just didn't have those facilities in the ER--and while they're working on getting her admitted, they'd get started working on her bowels.

In addition to getting the pain under control and trying more laxitives, they also did an ultrasound in preparation for the paracentesis. Finally, at about 10:00 pm, Misty got admitted, and moved to a room. They'll drain her belly tomorrow.

And that's about all we know at this point.

This post wouldn't be complete unless I once again expressed my gratitude to all of you who are praying for Misty and our family. Thanks especially to those who of you who are watching out for the kiddos while I'm here with Misty in the hospital. Thanks also for helping me keep Misty company while enduring the ER today.

I'll put an update here tomorrow after the procedure...

So sorry...

It's been a really rough several weeks... I guess after the emotional roller coaster we rode on in January, I haven't been up to writing about all of this. It's been all I could do to just keep going through life's motions--and barely that. I guess it's good news that I'm ok enough to post again.

I'm also very surprised at how many people are actually reading this. In these past weeks, I've been told by several people--people that I didn't expect to be reading this--that they check this blog every day and are waiting to see how things are going. So, I'm really sorry to keep you all waiting, and please forgive me for slacking off.

So... back in January, after she got home from the hospital, Misty was actually sleeping and feeling more rested than she had for quite some time. I think this was due in large part to the lack of sleep caused by all the pain she was in, and then there was the sudden absence of pain and she could finally rest. The swelling in her belly reduced, and continued to reduce for several more weeks. In recent weeks the swelling has returned, but not nearly to the degree that it was, and it has also subsided, mostly on it's own as well. We're taking this as a sign that Misty's body is trying to regulate the fluid build up by itself and is mostly successful, despite the tumors.

If you remember, Misty wasn't able to eat when she was in the hospital last. She could barely keep down liquids and anything that was fed into her tube seemed to cause vomiting within minutes. About 2 weeks later, Misty was eating small amounts of fruits--juicy and slippery fruit like grapes, oranges, and melons--as well as avocados and some soup.

In the first week of February, we got in contact (through someone in our ward) with a couple, Sergio and Eva Bentacort, who gave Misty some "energy" treatments. I don't know what else to call it; the people who do it just call it "energy work" or "energy therapy". (The treatments look sort of like a very light massage, but with very specific hand placement and movements.) After that first treatment, Misty felt relaxed and slept very well that night. The following day, Misty's dad drove her to the couple's home, just south of Dallas. She stayed there for most of the day and received several of these treatments. The treatments again had a profound effect, and Misty (who can never sleep in a car) slept on the way home from the treatments! Over the next couple of days, Misty's appetite picked up quite a bit and she was able to eat more than she had in weeks. Misty was invited to go to the clinic in Mexico where the Bentacorts where trained and to get more intensive treatment. The first weekend in February, Misty and her mother went with the Bentacorts down to Monterrey, Mexico. Even though I didn't (and still don't) understand this "energy therapy", (and, to be honest, it seems a little weird) we are convinced that it's certainly doing something positive. Since that first treatment over a month ago, it's been a slow but sure progression back to health.

At this point she's feeling about like how she was at Christmastime--but better. She's taking very few painkillers now. As a result of fewer pain pills, she's much more clear-headed. (Those of you who came and saw Misty in the hospital in January saw just how foggy all the pain meds made her!) For the past two weeks (three, including today) she's been able to sit through all three hours of church. She really is doing much better. We have been praying for a miraculous healing, and this certainly looks like one. She's not out of the woods yet, though. She is still losing weight, despite eating as much as her body will let her. She is still very weak and gets tired throughout the day. She has to sit down or nap frequently. And of course, the pain just shows up every now and then, exploding in her stomach for no apparent reason. The good news is that it goes away after a relatively short time.

Misty is going back down to Mexico next weekend for another set of treatments.

In failing to provide you all with updates on Misty, I've failed to express our gratitude here as well. Misty and I are truly grateful for all the help we've recieved from you. Thank you to those of you who came over and deep cleaned the house. It's amazing how much better things look with clean windows and scrubbed walls! Thanks again for the meals--both fresh and frozen. Thanks also for just coming over. Misty loves the company (and the attention). Thanks also for helping us out with the tires (the ridiculously expensive tires!) on the van. Misty wouldn't have made it to Mexico without the help. And thanks for so many countless other things.

Also... some of you haven't seen Misty for a while. Some of you still haven't seen Misty since she was diagnosed. Because she looks so different than what she did eighteen months ago, some people don't even recognize her. Here are a couple pictures of Misty that might help you recognize her. I have to say that when I went looking back through some of these pictures, I almost didn't recognize Misty anymore.



The first one was from March 2008, the next one is from July 2008, and the bottom one is from Christmas 2008.