Genetic Testing Confirmed...

Cheryl's blood test confirmed DPD Deficiency.

So, just like that, no testing, no awareness, she started chemo and it was over as soon as it began. She was aware of the side effects of the treatments and was prepared to deal with those.

I got word from her doctor about twenty minutes ago.

The emptiness and anger I have felt since last Friday now has a focus. Some way, the future for me and the only way I can make sense out of us losing her is to try and change the system to make testing common place.

Thank You Becca

I've been meaning to add this for a few days and its slipped past me.

Just wanted to let Becca know we all thank you for gathering the supplies for the animal shelter.

Here she is, just hope she's not like Cheryl as a couple of pets would find their way back to the house each visit!

She should've been at work today

Today's emotions were quite a bit different for me.

I'd put off stopping by her job to pick up her things. As I was driving over this morning, I kept thinking had it not been for the damned chemo treatment, she would have at least been able to enjoy going to work and taking part in every one's day as usual. The thread is that thin and I'm really having the most trouble yet accepting that.

I visited her oncologist to request her records. More remorse on his part and I feel its genuine and try not to focus my emotions on him personally. I'd wanted to pick up her records and he said he had no trouble with that but the records Nazis had a different thought. No HIPAA authorization, no records. So, back to square one or lawyer on that next week.

Here's Cheryl's Obituary as placed in her hometown newspaper by her Step Mother, Donna: Taunton Daily Gazette

Another Chapter Closed

Sean and I finally were able to bring Cheryl home tonight. I'm not entirely sure how either he or I feel right now.

Sean mentioned last night it was like Ma was visiting Grandma for a time and it still feels like she'd be coming home. I've felt like it was another of my long temporary duty assignments and it'd be ending as well. Guess those have me more prepared than his experience has for him.

We went to a movie early in the afternoon and stopped for dinner on the way home tonight. Figured as we're about to get back to work and school, we best not take a moment for granted and enjoy something simple today.

Not sure where I'm going to be taking this blog over the next few weeks or if I'll even keep posting since the original plan for it has ended. I am planning to start finding a way to someday change the system to prevent another family from having to witness such a tragedy.

We're all home together tonight. Love those in your home as never before and appreciate those moments.

Rick

Cheryl's Obituary

Family, friends and all who have prayed and offered your generous support, thank you for your support.

Cheryl's Obituary can be located at: Porter Loring

Sean and Rick

Three Roses, One Tear

Cheryl Lee Britton
19 August 1963-3 January 2008
Mother, Wife and Angel

At 1:50pm this afternoon, Cheryl finally decided we were prepared to follow on without her for a time. It was fifteen years ago today we spent our first night together in San Antonio as a family

We were able to place three beautiful pink roses beside her pillow before she passed, the nurses made an exception to not having flowers in the room for her. I have never smelled roses as sweet as those.

One rose representing her love for her family.
One rose to to mark her path through life and the happiness she shared.
The final rose and the largest, for her faith and strength and to show God and those preceding her and to shed her sunshine from high to better warm our hearts.

As I felt Cheryl moving on, one large tear ran slowly from her eye and down her cheek.

Sean and I and the rest of the family know you were saddened by leaving this way, the tear was noticed. We hope you enjoyed the small gift of flowers we were able to provide thanks to Mary Roza.

Good Night my darling.

Wednesday, 2 jan 08

Cheryl made it to the New Year.

Nancy, her mom arrived Monday night and Cheryl beamed when she came to the room. She stayed the night with Cheryl New Year's Eve.

Yesterday was really up and down for her. She was having trouble staying conscious and coherent and it was getting worse as the day went on. She's very frustrated and still having a lot of pain in her mouth.

Because of the damage to her mouth, she is still being fed IV and those supplements are playing hell on her system. Her pulse has been staying higher than normal and her B.P. is really going all over the place throughout the day. Also, her blood sugar is getting higher daily.

She was moved to ICU late evening to provide more thorough monitoring for her vitals and breathing. They are looking to give some type of respiratory support to help clear the fluids building up in her throat.

On the fight side for her though, she was giving the thumb's up and waving a lot yesterday and once as she was sitting on the side of the bed, she did a little dance to a commercial jingle on TV.

Its really between her and God now and I know she's towing her load.

Sunday Update

Whew, today has been a tough one.

Cheryl has developed severe pain deeper in her throat since early morning. Her cheeks and jaws have also caused her much pain today. She is very tired and while I know she will keep fighting, I can see that twinkle dimming just a little bit. She has relied on the morphine double today over any other day in her hospital stays this year.

Her mom is coming in tomorrow as is my brother. Her step-mom will be arriving in a day or two.

Kimberly and B visited this morning and Cheryl was able to tell Kimberly she wants her Ma here. Kimberly, B: I cannot thank you guys enough for being able to be here and have her tell you. It has been getting harder every day to find something to comfort her and being able to tell her Nancy is coming was a blessing.

Cheryl has another ten days or so for the ravages of the "suspect" DPD Deficiency / chemo drug 5-fu run their course. After that, she has the additional burden of any long term damage to her body and any infections that may create new problems.

Tomorrow will bring what it brings and we will pray for her strength to carry through.

For My Mother

Mom,

Fourteen years ago today you were called away. Through all this time, your love has been in my heart. You laughter in my ear. And you guidance in my spirit.

Cheryl and I have done our best to pass on to Sean all the good from those who taught us and I am certain you'd be proud of the young man he is tonight.

Today has been a challenge and I have put off clearing my thoughts for this day. I have felt you with me today and you have given me the strength and peace to accept things as they may be. I do admit that I had lost the optimism this week you would expect to help keep an eye on the good turn we pray will come. Thinking of you has helped me start to find that again.

Mother, Thank You

Sat Afternoon Update

Sean came and picked me up late morning so i could go home and get some things done. Had planned to stay till early evening but the six cats and Rocky The Wonder Dog* caught Cheryl's scent and began stalking me to get me to tell where she's been. They seem to be getting closer to managing the can opener too.

Got back to find her sleeping peacefully around 1530. Peacefully until I dropped something I was unpacking.

She got awake and decided to have a few sips of the Glucerna drink without being pestered to do it. Great!

Then, she also insisted to get out of the room and take a walk around the ward. Unfortunately, there was a problem. I let her push the IV cart in front or her like, say...a vacuum cleaner. She appears to have lost all housekeeping chore skills**.

So, she's back to resting from all the exercise and I'm off to EBay one of those robotic vacuums.

She just woke up mumbling something. I can't tell if it was Go Pats! or Feed Cats? I may need to run back over to the house right quick.

Thanks again all for the comments.


* So named because we wonder how we ever came across such a goofy, energetic yet caring little dog.
**Just kidding, she in put notice on the chores some time ago. With two guys on it, laundry went from whites, colors, etc to "yep, looks to be made of cloth, throw it in there."

A Good Start This Morning

Cheryl didn't rest well last night and was in and out of bed every hour or so. I didn't expect to see her getting around too much this morning.

She got out of bed around 0800, sat in the chair for nearly an hour and had apple juice and a cup of water.

Dr Friedman was here early and is going to wait for starting the IV feeding to see if she can get a can of Glucerna down today. He is still watching closely for any infection. And in true doctor form regarding when she may be better: "You're in the hospital until you go home." I'm afraid he's double billing us as he's as much help to me as her.

I find it amazing watching how well he tends to her as compared to the quack that caused her bladder damage and never seemed overly concerned about her when she was kicking in pain. +1 for this guy for sure!

Her face burn seems to have finally stopped and is now only drying and cracking. The drinks this morning may be a sign that her mouth pain is becoming more tolerable. The swelling in her face seems to be receding and her throat swelling pretty much went away overnight.

She's resting as Donna suggested to be ready to go for the Pats game tonight!

Just a Popsicle!

I wasn't going to post a closing to today as I was simply too tired and too depressed to find something positive for the day.

Cheryl has has a tough time with the mouth pains today. Added to that was the lack of any energy from the fever. She just never was able to get that little spark today.

Until later this evening... Sean stopped in and that was a huge boost to her, having him to watch TV and just sit with her was very comforting for her. Comforting to all of us actually.

Then, her night nurse offered her a Popsicle. She's been very sensitive to cold food/drink from the chemo medicine but she took the offer. The cold ice seemed to really soothe her mouth and lips and cut some of the pain for a bit.

I saw a brief peek of a five-year old gal with nary a care in the World, sitting on the sidewalk enjoying that Popsicle!

So there, a good turn after all!

G'nite!

12/28 #2

Dr. Friedman visited around 0730 and told us her blood count is low this morning. He ordered platelets for her.

We're waiting for the type test to come back and they'll start that.

The fever seems to be staying down and her BP was just at perfect last check. Her pulse is still hovering around 100 which is where its been since chemo started last week.

She is very tired still today and her mouth is still giving her fits. BUT, she has finally found something she likes to drink. Her nurse, Victoria mentioned Sierra Mist this morning and her eyes lit up. She's sipping that and keeping it down better than anything yet.

A New Day

Cheryl rested pretty good last night. She was only up twice compared to five or more times previous nights.

The nurse checked her vitals this morning. BP was low but good. She has a 101.3 temp this morning.

The nurse immediately took blood and set her up to start antibiotics right away this morning. I am still very pleased with how the staff here is taking care of her. Dr. Friedman left orders regarding as a precaution for infection and these guys were on top of it right away when she showed having the fever.

I'm hoping they are ahead of the infection. That's the worst I've seen her through was the MRSA when she was too tired to fight it.

12/27, 2200 But Wait, There's More!

Doctor Friedman just stopped in after working all day in Uvalde, 60 or so miles away. The guy rocks! Cheryl was very happy to see him stop in this late.

I spoke with him after he was done checking her over.

Liver and Kidney function are good. He saw the Calcium count was low and its already on the IV, ten minutes later. He is stopping the Bactrim, the antibiotic she's lived on all year and is still taking as a MRSA precaution. There's some suspicion that this may be a contributor to this problem. Just in case of infection, he has already written orders to speed treatment should any bacterial infection show up. And, he stopped the nutriphos? oral solution as it burns her mouth badly when she drinks it. She is very happy to have that stopped for now.

He feels Cheryl has started turning the corner from the danger of the drug reaction.


All news we are grateful to hear today!

12/27 2100

Another day marked off. Seems to have been a pretty good day, she has at least held her own and made some goals today. I'm very proud of her and quite relieved to see her strength.

This afternoon, Jerry the hospital chaplain visited and prayed with us. While I was home, Pastor David Trawick from her church, Northwest Hills Methodist visited after being notified only a couple of hours earlier. Thank you pastors, you brought a couple of rays of sunlight to warm her soul.

Sean dropped me off for the night and visited for a couple of hours. He's back home now, tending to the cat herd. Sunshine made an attempt to stow away in her luggage when we were packing this evening. Its so funny (and sad) to watch the cats and Rocky the chihuahua wait around the door for Cheryl when I go home. Little Bit, the consoling cat is the oddest one, searching for someone to comfort.

With a bit of reservation and Cheryl's permission, I'm posting a pic of her and Sean tonight. Just remember, she still has twinkle in her eyes and laughter in her lungs.

Tomorrow will bring better times.

12/27, 1140

Sean came to visit for a bit before heading off to work this morning. She managed to get awake for his visit.

After he left, she also was able to get up and shower. I asked about hair loss before she showered and she said there hadn't been any symptom of that yet. Should've kept my mouth shut because when she was brushing out her hair after the shower, it came out in clumps. This is just starting so that will last a few days before it done I guess. The hair loss isn't a big deal to her at this point because she's had so much time to prepare for that symptom.

The "chicken pox" rash that has been on her chest has gotten a bit better. I saw the rash on her back for the first time today, assuming it has also gotten better, I'm really glad I hadn't seen it sooner.

Closing with the positive: she was able to drink some more juice even though it burns her mouth. And, best of all, she was able to take a walk around the ward. Only for a couple of minutes but it was reassuring to see her push to get the exercise.

We're waiting for the nurse to reattach the IVs now and she's resting comfortably even without the morphine.

Morning Update

Cheryl seems to have slept better last night. She only used the morphine twice throughout the night.

Her throat pain persists so taking any liquids or food is still pretty much a no-go. She DID manage to drink an entire cup of Apple Juice this morning. Another good sign this morning is she is managing to take the one liquid medicine mixed with juice today. First time for that too.

The blood work for the DPD deficiency test was drawn this morning. It'll be several days before the results are back.

The swelling on her face and throat seem to have stopped and the moisturizing lotion is helping the sunburn.

The doctor just visited and repeated the expectations of this clearing up, it may take another two weeks.

Figure we'll try to post from the room here a couple of times per day since she's not able to talk much right now.

Getting Worse Today

Cheryl woke this morning with yet more side effects from the treatments. Severely swollen face/throat and her "sunburn" is now cracking and starting to have open sores.

Dr. Friedman visited this evening and suspects DPD Deficiency.

He will be doing tests tomorrow and explained that this is a rare defect in people, so rare the insurance doesn't cover the testing and its hardly ever seen during chemo. Go figure...

All the tests will do is to try and narrow down the cause. Unfortunately, there is nothing to be done that will "flush" her system and speed the healing process.

She finally agreed to have morphine added to her IV tonight which is to cover some of the throat and mouth pains and also to help her get some sleep.

She needs prayers and thoughts right now because this is going to be the toughest battle she's had throughout all of the things she's endured this year.

A Smile and a Laugh for Christmas

That's from Cheryl and it was difficult for her to manage that today.

Looks like the line from feeling bad to good isn't too straight for her. Restless night, nausea returned and now the "chemical burns" are affecting her urinary tract as well. Also, her face is now peeling like a sunburn.

She still isn't able to eat as her mouth and throat are a tad worse today but she has been able to drink a little bit of a milk shake warmed to room temp.

Also, after thinking that just maybe she'd feel better to go home today, it turned out to be a hard pill to admit to herself that wasn't possible this morning.

The nurse gave her medicine for the nausea that makes her sleepy and right on the money, she's zonked and snoozing away this afternoon. I'll never complain about her snoring again. Well, I will but it won't really mean anything.

Sean visited this morning and is returning this evening. We watched the Simpson's Movie because she's been laughing at the clip with "Spider Pig" on TV, it got some chuckles from her. He also brought her a nice stuffed dog that one of the cats will fall in love with as soon as she takes it home.

Sitting here looking at the San Antonio downtown skyline this afternoon. Last time I remember just staring at that tower this long was in Basic Training, 1980. Aunt Wilma passed away and I was allowed to stay in the barracks for the afternoon. I stood on a chair to see out the window and that was all I could see from the angle was the tower. Like then I now realize, not liking the view too much today...

She will be able to cash in the Christmas rain check later this week for sure!

From the room with a view: Thanks to everyone for your prayers, thoughts, calls and cards.

"One In A Million"

That's what Cheryl is to me and she's proving to be that statistically as well!

Yesterday was more of the same for the weekend, nausea, sick stomach and not being able to keep food or drink down.

So, it was decided (AFTER The Pats won of course!) to take a trip to the E.R.

She was admitted to Methodist here this morning suffering from pretty severe dehydration, general aches and pains and a worsening case of Oral Mucositis.

That was the biggest complaint she had and it turns out the mucositis was the leading cause of of the nausea, etc.

She received a couple of liters of IV fluids in the E.R. and around 0430 this morning was admitted to the Oncology Ward for follow up and more IVs. That staff has been great and super helpful so far.

This morning her Cancer Care doctor told her that a reaction of this order was "one in a million" in patients receiving chemo treatment.

He feels the 5-FU drug is the culprit and is concerned that the Bactrim she is still taking for MRSA may be compounding the problem.

She has made a good bit of improvement today. Able to talk a bit more, and also kept down a smooth shake. She's up and around getting her strength back as well, hoping to be "frisky" as the doc put it to possibly be discharged before late week.

Merry Christmas to all from our exotic holiday getaway!

Lazy Day

Not much change today. The medicine is still making her face red and the nausea came back this evening.

She hasn't been anxious or energetic to do very much today. Managed to do about thirty minutes of shopping and some work on a scrapbook this evening. But, like her father, nary a complaint about not feeling well...

We were going through a photo album recently and Nancy mentioned her trip to Germany in '84 when I was talking to her today. Here's one of the many pictures from that visit. Sorry, I'm not certain where we were at when I took it. Bavaria at one of the castles I think.

A Rest and Fluids Weekend

The shots yesterday helped and she was rearing to go this morning after a good night's sleep.

Today however, the red face and chest returned so the clinic is going to have her start the steroid pills this evening. She's also becoming more prone to getting the chills.

Her only other complaint is a slight sore throat when she inhales deeply.

Temp and B.P. are good, her pulse is a tad high and the nurse covered that with the body fighting the meds and not getting enough liquids possibly. And we all know if it isn't Ice Coffee, she's not much for hydration!

My biggest fear is seeing any kind of symptom of the MRSA getting another go at her. So far, so good on that not happening.

Day Three Complete

Cheryl "survived" her visit today. The treatment took its toll and she finally got sick.

She rebounded quickly and the staff was great keeping her comfortable and at ease.

They also gave her prednisone, Benadryl and something else to help with the nausea. The prednisone is for the redness she's gotten, and the Benadryl is...I think I have this right, for the aching that will be caused by some reaction to the medicine in her bone marrow. When she gets up and around, I'll make sure all of this medical stuff is correct and add better details of the treatment today.

She slept all the way home and is just waking up, three hours after finishing the treatment. Sure seems beat today but still hanging tough.

I heard one of her nurses ask her doctor today is she's always laughing. He replied that yes she has been since the day he first met her. And that's been typical through all of this.

More to come on the medicine details and over the next few days, we'll be detailing our experience to this point as time and memory allow.

Here's her Oncologist: Dr. Friedman click name to see details and center info

Apologies for the cheap photo, its from the phone cam.

Day Two: Catch Up

Today was Cheryl's second visit in her first series of Chemotherapy.

Sean took her yesterday and the treatment lasted nearly five hours.

Today's was a bit shorter, four hours.

The drugs she is being given are: Eloxatin; Wellcovorin (Leucovorin); and 5FU.

Day one was a period of IV induced meds and then a small pump was attached to come home overnight with.

Today, more of the same, IV w/ saline and then the meds and another night with the pump.

Seems all summer with the KCI Woundvac was good training for this treatment!

Her side effects yesterday were sick stomach and mild dizziness. Today, she has more of the same and seems more tired. Her face was very flushed this afternoon but has lessened some tonight.

Her attitude is rock steady and laughing as usual. Solid kid she is.

I'm hoping to get her online to log her perspective of this treatment soon.

Here's Ma doing her homework with one of her helpers...