The Official Brittany Janae Riley Web Site

2002 (in chronological order)

She started running a fever in Lewistown Jan. 22nd at a pastor's conference. The fever spiked up and down Tuesday, Wednesday and Thursday. Thursday afternoon, it spiked to 105 degrees. She went into the doctor's office Thursday night. Doctor Langhor ran strep test - negative, no ear infections, no flu, so they wanted to run a blood test to see what was going on. The doctor called at 10pm to say that the blood counts were too low. He wanted her checked into the pediatric department at St. V's to have a blood transfusion to get correct amount of oxygen to her heart. Doctor Langhor contacted Dr. Kelker (Pediatric Oncologist) to look at the blood that was drawn. He said he saw suspicious cells in her blood that pointed to Leukemia. Dr. Kelker said she needed to be flown to Denver to have a bone marrow test to diagnose.

Friday afternoon Kyle and Britt flew in a hospital transport to Denver Children's Hospital. Jill, Sue and Taryn flew down to Denver later in the evening. Tests were scheduled for 10 am Saturday morning - bone marrow test, spinal tap, and also the addition of a direct port (like in IV in your chest instead of your hand) for medication. Brittany slept thru the night Friday for the first time since Thursday afternoon (with a little help from Benadryl).

9:30 am - Down to surgery unit.

10:50 am - Doctors came out and said bone marrow test and spinal tap completed successfully (dose of chemotherapy put directly into spine during procedure)

11:50 - 12:25 pm - in recovery doing great but needing a little extra oxygen.

12:35 pm - back in room resting and watching Veggie Tales waiting for the test results.

2:00-3:20 pm - Conference with doctors to discuss test results. Since the surgery, we noticed a considerable increase in perkiness and a drop in her temperature. They are monitoring her pneumonia and battling it with antibiotics.

Diagnosis - A.L.L. (Acute Lymphoblastic Leukemia) - less aggressive cancer. Very treatable. 99% go into remission. 85% never relapse = 90% cure rate. Received general information on two-year treatment program. Most likely treatment will begin Sunday (January 27th)

Mommy note: some side effects of chemo; hair-loss, nausea and weight gain. Please use this as an explanation to children when they ask why Brittany looks different, and that she is receiving medicine to make her better. This comes as a request to always be sensitive to others in word and action.

Brittany had a good night. Slept from 11:40 - 7:40 am. Some coughing, but not enough to wake her up. Mommy and daddy and Taryn got a good night rest and the Ronald McDonald House just across the street. Blood levels remain the same as yesterday. Had a nasal wash at noon to see if she can get out of quarantine. (Have to see if she has R.S.V - a respiratory virus) Took a two and a half hour nap this afternoon and is up an playing. We'll have her first chemo treatment this evening, two pills and one injection into her port. First month is two pills a day and another injection in three weeks. Will have one injection into her upper thigh that is a slow releasing chemo treatment for the whole month. She ate almost a whole doughnut for breakfast and has had apple juice and 7-up throughout the day. She also ate a few noodles for lunch.

Expecting a good evening. Thanks for all your prayers and support. Till tomorrow.

Brittany slept for another good eight hours last night. She's a little crankier normal, but doing alright. She has a few favorite nurses (Jennifer and Heather), but she's wary of other medical personnel. Brit's a little fussy about taking her oral medications, but I think she'll get used to it. A few of them get disguised in cherry or chocolate syrup for easier consumption.

Brittany's favorite moves here on 5A (the Oncology Ward) are: "Where's God When I'm Scared," "Larry Boy and the Fib from Outer Space," (both Veggie Tales) and "Toy Story 2." Also, Mom and Uncle Stace found "Lyle the Kindly Viking" (Veggie Tales) at Target yesterday, so we got a bit of a reprieve from the other two. If Daddy hasn't had these movies memorized before, he does now!

Dr. Greffe and Dr. Bassal discussed with us this morning the plan for the rest of our time here. Dr. Greffe advised that they would like to keep Brittany in the hospital for a few more days. She is going to be on antibiotics through tomorrow to finish clearing up the pneumonia. She's also on a couple of other meds to keep her phosphorus, blood acidity and blood pressure down.

The final results of the nasal wash will come back tomorrow. If they're negative for RSV, she'll be cleared to roam the halls and get to the playroom. Brittany will get a shot of Asparaginase (a.k.a. PEG) on Wednesday, which is a cancer-fighting med given IM--into the muscle. Then, she should be able to be discharged.

We'll need to stay down in Denver, however, as they want to check on her via the Clinic here at Children's on Friday. Then, she'll have another bone marrow aspirate and spinal tap on Monday. After that procedure, we should be cleared to go home. We'll do the next three weeks of therapy up in Billings with Dr. Kelker. Brittany will visit him twice a week, getting Vincristine through her IV port once a week and blood work drawn through the port on the other visit.

We'll make a quick trip down to Denver at the end of the Induction period (28 days) for a check up down here. We'll be down here every few months to see Dr. Greffe and Dr. Schulz. So, if anyone wants to make bimonthly visits to the Mile High City, the Riley Shuttle will have a schedule published soon! :)

Brittany hasn't napped a great deal today. She did get about 20 minutes during her echo- cardiogram (sp?). It was pretty cute, actually. She had the echo and the EKG today to get baseline readings on her heart. This is to help ensure that the cancer drugs aren't going to do any damage to that all-important muscle. At any rate, we're hoping she'll go to sleep soon, as it's about 9:25 p.m. MST.

KR

Well, Brittany hasn't been in the best of spirits today. It probably hasn't helped that she hasn't been able to get out of the room...the final results of the nasal wash haven't come back. However, her number of lymphoblasts has gone down to 2%. It was 40% when she came in, and 3% yesterday. So, the therapy is working as hoped.

Dr. Greffe stated that we are still on track to get out of the hospital tomorrow, an hour or two after her PEG shot. We'll probably stay at the Ronald McDonald House again tomorrow night. But, Uncle Stave and Aunt Jami have invited us over on Thursday for the rest of the time we're down here. Brittany is wanting to go home, and would like to go to cousin Hunter's house.

Other news of note, Brittany was taken off of the IV antibiotics and switched over to the oral. As well, she is now off of the Allopurinol for the blood acidity levels and the Amphogel for the phosphorus levels. They've shut off the IV in preparation for us leaving tomorrow. However, Brit hasn't fully regained her appetite.

Daddy needs to wrap this up as Taryn's sitting on his lap and is in need of going to sleep.

Brittany is excited to leave the hospital! She had been asking for her coat for the last two days. Brit got her PEG shot(actually two shots, one in each leg simultaneously because of the large dosage) at about 10:15 a.m. She wasn't happy to get that, but they had done a pretty good job of numbing up the areas on her thighs where she got them. Daddy was there to try and distract her, but it didn't work very well. :(

The doctors didn't end up coming in to see us until around 11:15 a.m. or so. Actually, they were in to see Brittany and Jill as I was off trying to find a wagon to haul stuff. Nurse Jennifer got the OK to take the needle out of the port, which allowed Brittany to get dressed. She was very happy to put on her clothes and coast. The hospital was also trying to find a car seat that we could use, as we don't have one down here. So, Mommy and Brittany walked over to the Ronald McDonald House a little after noon, while Daddy kept searching for a wagon and a car seat.

I arrived at the Ronald McDonald House to find Brittany playing in the playroom attached to the dining room/kitchen area. Grandma and Mom were eating some taco salad that was in the kitchen. Brit was a little wobbly, but her demeanor definitely changed being able to move around and play with some toys. Plus, Uncle Stace showed up, stating that we'd be able to stay at their house tonight.

Stace took most of our luggage to his place first. Then, after dropping Mom, Jill and Taryn off at the mall, he came back to take Brittany and I to his house. Brit wanted to go with the girls to begin with, but we got to watch Pinnochio in the meantime. It actually took three trips to get everything over to Stace and Jami's, as his Tercel doesn't hold a lot!

Brittany got to meet Cooper (the dog), but she wasn't in the mood to play. Actually, she's under doctor's orders not to play with animals right now. We tried a Happy Meal for dinner to coax her to eat, but she was overly tired and probably just didn't feel too well today. All in all, she's very happy to be out of the hospital, and I can't blame her.

Today, Brittany had a nurse visit back at the clinic, at Children's Hospital. She had some blood drawn to check all of her levels. Her platelets and still dropping, but the Dr. said she is holding her own so they decided not to transfuse her today. They will most likely give her a transfusion on Monday when they do the other procedures. We were grateful that they didn't need to do that today. She isn't eating very well, but is doing a little better with the liquid.

Brit is having trouble keeping her meds down. She seems to gag on all of them and ends up throwing them up. It is really hard to force her to take so many different things, but we are praying for her to get used to taking them for as long as she has to do so.

We had our first real non-hospital outing today. Uncle Stace took Daddy, Brittany, Taryn and I to the mall. I, of course was thrilled, the boys less so, but Brit was at least able to get out and look around a little bit. We weren't gone for long, but long enough for a little change of scenery and some fresh air!

Thank you for your kind messages of love and support - they are welcome and appreciated.

Not much to report today - Grandma, Brittany and I (Jill) took a long outing yesterday and had a good time. We left the guys with the baby. Brittany has been feeling pretty good - except when it is time to take her meds. She has developed a very strong dislike to that.

Dad (Grandpa Dave) arrived last night and he and the boys are looking forward to Super Bowling together today.

As for this morning...Brittany is a little out of sorts. She has had her shoes on for a couple of hours already, because she wants to go home. We are looking forward to getting her back into familiar surroundings.

Please pray for Brittany as she enters the Oncology clinic tomorrow morning at 8:00 a.m. for an exam and preparation for procedures, which begin at 9:45. They will be giving her blood (platelets), doing a bone marrow biopsy, and a spinal tap. They will also be giving her more chemotherapy in her spinal fluid.

An e-mail note: Starting today you may send messages to 6mtrileys@attbi.com and it will get to us, both in Denver and at home. Hopefully by the next time this site is updated, we will be home. Pray for safe and peaceful travel for Dave, Kyle and Brittany. (And for Sue, Taryn and I who are flying!)

Brittany is doing well and adjusting to being back home. She is sleeping very well and eating consistently. She is very, very tired and we are assuming that is from a combination of things . She is starting to relax a little bit and play, but she is still a little weak to be running around.

My sister, Dana', is here and it has been nice to have the help while we are trying to unpack and reacquaint ourselves with Emily and Alex.

We have an appointment with Dr. Kelker here in Billings for Friday (just to meet the Dr. and have a clinic tour) and then we have another bone marrow biopsy and labs to do on next Monday. As of the last Monday, the 4th, Brittany's blood and spinal fluid were clear of leukemia cells (blasts), but still had at least 5% blasts in her bone marrow - this is the reason for the next bone marrow biopsy.

Since we have been home, her meds have been going down easier - we have figured out better ways of disguising the pills, and she has decided that taking the fluids from a spoon (instead of a syringe) is OK.

We are so pleased to be home and back with the family. I think there is a part of us that is still wanting to wake up from this bad dream, but we are doing well in spite of things. We cannot imagine going through this alone and are so thankful for all of our friends and family that are helping out.

Brittany had her first Dr.'s appointment in Billings today. They did check her blood and said she is doing OK. She is starting to make red blood cells on her own and they think by maybe next week, she will start producing white blood cells. Dr. Kelker says that her blood has finally "hit bottom" and will start improving from here on out! The chemo is doing its job. We will be going in for a bone marrow biopsy and full labs on Monday morning.

Brittany is still very tired and lethargic. However, she is eating and resting well. We miss the happy, healthier Brittany, but we thank God that she is not sick from the medicines and that she is doing wonderful in spite of it all!

On a totally different and lighter note, we're closing on our house today. Kyle and I are finally becoming homeowners.

Monday morning Brittany had another bone marrow test. The doctor gave her Versed to put her to sleep, but it didn't work as well as we hoped. He actually gave her 4x the dose an adult would get for a procedure, and she was still awake! (he said sometimes children are naturally resistant to some meds!) Needless to say, she was a little over drugged for the day! Thankfully, the Versed is an amnesia drug, and she won't remember a thing. After the test, we came home and she ate 2 packages of Top Ramen, 1 bowl of macaroni and cheese, 1 bowl of chips and 3 glasses of milk...all before nap time!

The bone marrow test did come back positive. When we left Denver she was at 38% blasts in her marrow. She is currently at 6%. Her blood is also looking better. Dr. Kelker said this week that at this point it has bottomed out and is on the rise. We had another blood check on Thursday, which showed a rise in all her counts from Monday.

Dr. Kelker has been working hard at making friends with Brittany and gaining her trust. He actually got her to hold his hand and walk with him to the "treat" bucket at his desk. That is a huge, positive step, since she is still very upset and clingy when we get near the hospital.

On Wednesday, I spoke with Dr. Schulz in Denver. She said the genetic/chromosome testing is done and the results were positive. She said Brit has all the essential chromosomes she needs to fight this and even some extras. (for a better explanation of this, look at the "How leukemia is staged" section of the ACS web site - link is provided below). We praise God for that.

Many of you have asked how we are doing...Kyle was gone this week for work, which, of course, makes it a little harder on me. We feel we are handling life, with all its blessings, complications and changes, pretty well. For my part, I am trying to take each day and lay it in the Lord's hands, but I do find myself caught up in moments of sadness. I don't think I can put into words really what I feel - I just have some sad days. Kyle has been trying to get back in the swing of work while trying to spend time with the kids and show support to me. Somedays, I think he runs a three-ring circus, with work, family, church worship and his radio sports work - but he is ever the ring master and excelling at all he does.

We have had an incredible amount of love and support from our families and from our church family. Thank God for His family that ministers in love and compassion - We are so thankful for those who are His arms outstretched!

Monday, Brittany will have blood drawn and her Vincristine (chemo) - all through her port. Then, we won't see a doctor again until the following week in Denver.

Thank you for continuing to use this web site for gaining information. It is an easy way for us to keep you informed and up to date!

To learn more about childhood leukemia

Tuesday, February 19, 2002

Yesterday, Brit had blood drawn and her Vincristine. Daddy said she did pretty good with the doctor. Her platelet count has almost doubled since Thursday (from 68 - 112), which is terrific. However, her white count and red counts have all gone down. The platelets are the first thing in the blood to start back up, so we are hoping everything else follows suit.

We will be in Denver early next week for bone marrow, spinal and blood work. We will update this site when we return Wednesday or Thursday!

Saturday, March 2, 2002

Our trip to Denver spanned 34 hours at the beginning of the week, 19 of which were on the road. We found out that we have two too many children for staying at the Ronald McDonald House, so Uncle Stace and Aunt Jami kindly let us stay the night--even though we didn't get in until 12:45 a.m.!

We arrived for Brit's appointment at the Oncology Clinic right on time at 10:15 a.m. However, the clinic was backed up an hour and forty minutes. So, Dad got to keep an eye on Emily, Alex and Taryn while Mom was with Brittany. Alex and Taryn could not take advantage of the daycare because of a cought, so the four of us stayed together.

We had mixed emotions as we got the results and prognosis from Brittany's doctors in Denver. Her counts are currently looking good, but they were not where the doctores expected them to be by day 14 of her treatment. As such, they have changed Brittany's regiment of treatment, which will have her on a cycle of intensified treatment months and maintenance months for the next 10-12 months (as opposed to 2-4). This is to prevent a relapse, which would be extremely difficult to overcome, and which usually has grave results.

So, Brit didn't get any chemo on Tuesday, as Dr. Greffe and Dr. Schulz needed to confirm with Dr. Kelker in Billings and others the new plan of attack. Our trip home was 2 hours faster than on the way down, thanks to some better roads and shorter breaks. Mommy was so smart to have picked up the TV/VCR combo for the car from e-Bay!

Brittany had an eight-hour session at the Oncology Clinic in Billings yesterday, where she was infused with some of the new chemo drugs over a six-hour period--I think all doctor's offices have backups/delays/frustrations! :) Things seemed to be fine, and Brittany was in relatively good spirits (thanks to being off of the steroid this week) until about 7 p.m. She spiked a fever of 104 degrees Farinheit (sp?), and had to be admitted to St. V's last night. It turns out that she has picked up one of the many bugs that are flying around. And, with her compromised immune system, it got to her pretty quickly.

We've been advised that these new chemo drugs will cause her counts to be lower, and so she may have multiple stays in the hospital over the next year due to her immune system being deficient. That's something we pray will be kept to a minimum. Brittany will be in the hospital until at least Sunday afternoon. She seems to be as happy and perky as one can be for being as sick as she is. More to come next week.a

Saturday, May 11, 2002

Sorry for the long delay in updates. Life hasn't stopped moving for us in any other aspects. I (Kyle) have been on the road for six of the last nine weeks, as I still have a job to do.

Brittany

Tuesday ,May 21, 2002

A (VERY) QUICK "MOM HAS FIVE FREE MINUTES DURING NAPTIME" UPDATE!!! We arrived home from Denver last night. Friday Brittany went in for her appointment and for her spinal tap. They did chemo in her spinal fluid and did some chemo through her port. We returned to the hospital on Saturday for Peg (chemo) shot in her legs. So far everything looks great. The biggest negative is that she is loosing a lot of weight. She is now down to 25 pounds. If she doesn't start gaining quickly they are talking about doing a feeding tube through her nose. I am not terribly excited about that so we are going to try everything possible to get her to eat and take in some calories. The doctor has given us lots of suggestions for liquid diets that should help her put on some pounds. We got the next "map" of her chemo. I was a little disappointed as I thought it would truly be a month "off" but it turned out to be lower doses of many of the same drugs she has already been taking.

The trip itself was pretty good. Brit doesn't feel well and so she traveled a little hard. She kept telling us she didn't feel good but couldn't quite tell us if it was her stomach or if she hurt. I think the chemo just makes her achy and sore all over. We took the kids to the aquarium on Sunday with Uncle Stace and Aunt Jami and that was a lot of fun. Hopefully I will have pictures to share soon!

Sunday, June 2, 2002

I wanted to share these pictures with you since most of you have not seen pictures of Brit since January or so. She is feeling OK this week and is, thankfully, starting to eat a little. She has gained one pound and Dr. Kelker thinks the feeding tube is really not a good idea. YEAH!!!! So, keep up the prayers for good eating and happy days.

The first picture was taken at the aquarium in Denver. The kids had a great time and it was a wonderful adventure. The second pictures is taken in the girls room when they were excited about new book racks! Incidentally, if you think Taryn looks big next to Brit . . . there are only about 3 lbs. between the two girls now!!!! The last picture is of Brit dressing up at her Great Aunt Betty and Great Uncle Marty's last weekend on an overnight visit to Bloomfield.

Wednesday, September 25, 2002

Picture 1: Brit's 3 yr. picture

Picture 2: A day at the water park

Picture 3: 8/15 our haircut day!

Wednesday, September 25, 2002

Hello everyone! Sorry for the delays in updates to the web site. Trying to fit everything into each day seems to be more of a feat as the days go by.

Brittany has been doing well since Sunday, Sept. 15, her last time in the hospital. That was a nine-day stint due to neutropenia (lack of white blood cells/neutrophils). She went in the afternoon of Taryn's first birthday party on the seventh. Yes, Taryn was born on the fifth, but with getting the family together, Saturday worked best for the party. :)

Although Britt was in good spirits in the hospital, she had to be on IV receiving fluids and antibiotics the entire time, as she had no neutrophils for most of the nine days, even after getting Neupogen every night. FYI, neutropenia is the most common and serious side effect of chemotherapy.

This was the third time Brittany has been in the hospital since July 30. The other two times were July 30 through August 4 and August 17 through August 20. The first two times were really no surprise due to the chemo she had received before. Although her last stay was definitely the longest to date, they stated that it was not uncommon among leukemia patients.

Brittany had plenty of movies (Mickey's Christmas again the favorite), as well as family and friends to entertain and keep her company. She came home a little spoiled from the attention, but her overall attitude has been great,for which we thank God. Jill and I also want to thank all of the family and friends that have helped us during these hospital stays. You have been a tremendous blessing and help to us, helping to balance the kids, our jobs and our sanity.

We were supposed to head to Denver for an appointment today, but due to financial constraints this month, it was totally unrealistic to do so. Plus, everything that they were going to do in Denver can be done at Doctor Kelker's office here in town, so the results can be sent down to Children's. That took a little bit of stress off of Jill and I for this week, anyway.

In other news, yes, Taryn is one and loud! She's very vocal about things, but polite enough to remove her pacifier before talking to you. She's still scooting around using the right leg to push (as one normally would when crawling) and the left leg to pull (as though she was sitting cross-legged on the floor). If you haven't seen it, we'll have to show you the video. She's pretty happy about things, but will let you know about any beefs she has with you--did I mention she was loud? However, she is becoming quite the daddy's girl.

Emily is in first grade this year, and doing well in studies. She's actually reading on a second grade level and learning all sorts of new things. She just finished up a unit on the water cycle, and can tell you the whole thing. Emily is in gymnastics this year, instead of ballet, and is enjoying it immensely. Not that she didn't enjoy ballet, but Jill thought, correctly, that she would enjoy everything with gymnastics more. Alex is starting some preschool work as well, which works well when Emily and Jill sit down for school. He's a smart guy, albeit totally goofy, and getting pretty good at the ol' hand-eye coordination. We were out throwing the football and hitting the wiffle ball on Sunday, trying to take advantage of the warm weather while we still have it.

Jill is busy starting new fall programs out at Laurel Family Christian Center. Jill had the opportunity to join George Burgin on staff in August as a co-pastor of the church. Her main focus is cultivation/disciple- ship of the church body. So, she's got a new adult Sunday School class starting, a brand-new midweek opportunity for the kids and development of the whole Christian Education aspect of the church going on now. This is on top of home-schooling Emily, doing a great job with the kids and the house (with assistance)and putting up with me.

Finally, yours truly. I'm back at Computers Unlimited, in case you haven't heard that previously. I've been back since July 15, as I was let go from my position with Westwood. My commentary (and that of others) is that it's shortsightedness on the part of Westwood, but that's water under the bridge (probably to the Gulf of Mexico by now). Perhaps a blessing in disguise, as now that I'm back to a regular weekday schedule, I have some opportunity for radio gigs. I'm the voice of Skyview Falcons home football games this season for KMZK AM1240, and for the Billings Bulls Hockey home games on 95FM the Hawk this season. Hockey is a new venture for me, and an exciting one at that. I'm also the morning sports guy/backup host for Newsradio 970, KBUL. Since I'm working 9-6 at CU, this works out well, providing some enjoyment while also obtaining some additional income.

Thanks again to all of you for your concern, prayers and support. From Billings, I'm Kyle Riley reporting....

Blessings to all - Thanks for the prayers!