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Darien checked into the Texas Children's Hospital in Houston on June 10, 1999
Darien's Bone Marrow Transplant was June 18, 1999
Released From the Hospital on July 12, 1999 (24 days after BMT)
Got to go home on September 3, 1999 (77 days after BMT)
Ate at a restaurant for the first time on September 26, 1999 (100 days after BMT)
Attended school for the first time on November 1, 1999 (136 days after BMT)             Surgery to install a catheter in abdomen on April 25, 2000 for Peritoneal Dialysis             Began Peritoneal Dialysis on May 12, 2000

Day Date Days Since BMT Daily Description
Sun Aug 20, 2000   Darien received her Angel's wings today at 2:10 am at the Texas Children's Hospital in Houston, Texas.  God Bless her.  Please refer to Darien's Photos to remeber the way I do.  Her Loving Dad.  I will miss her.
Fri Aug 4, 2000 New drugs seem to be working.  Realeased from hospital. 
Thur Aug 3, 2000 Antibiotics not working.  Changed and admitted Darien into the hospital for observation to try to clear up the infection.
Mon July 31, 2000 Diagnossed with peritonitis, an infection of the peritoneum.  Started antibiotics.
Tues June 13, 2000 Darien had surgery to remove the central line from the right side of her chest (just below her shoulder).   She had it almost a year.  It was used during the BMT and it is hoped that it will no longer be needed.  Also during the surgery, she had her double porta-catheter removed from her left chest/shoulder area.  This was used for chemotherapy during her original liver cancer treatments.  She's had it for about 3-1/2 years and hasn't been used since the central line was installed.
Thurs June 8, 2000 Darien had her 1-year bone marrow aspiration to check to see how the BMT is doing.  Preliminary results indicate that she is 100% donor.  This is good.
Sun May 14, 2000 Darien was released late Sunday evening, after her third dialysis treatment.  She will continue dialysis every night at home.  Before her first treatment on Friday, she weighted 68 lbs and on Sunday, she was down to about 55 lbs.  All due to lost fluid.  She seems to be feeling beter not carrying around the extra fluid and maybe she will start to eat better, too.
Fri May 12, 2000 Darien began dialysis.   She was admitted into Texas Children's Hospital so that she could be monitored and so that her parents could learn how to perform the dialysis at home.
Tues Apr 25, 2000 Darien had surgery today at the Texas Children's Hospital to install a catheter in her abdomen cavity in preparation for dialysis.  After the catheter heals (about 3 to 4 weeks), Darien will begin Peritoneal Dialysis.  Peritoneal dialysis is a treatment where the peritoneal membrane (lining around the inside of your intestinal wall) is used to filter and cleans the impurities, waste products and extra fluid from your body. Peritoneal dialysis uses a fluid called dialysate to remove fluid and waste products from your abdominal cavity and place them in the dialysate. The dialysate fluid acts like a magnet that attracts waste and excess fluid from the body.  Peritoneal dialysis must be done every night and generally takes from 8 to 10 hours to complete.

Since the last update, Dariens Creatinine has gradually increased to about 6.  This is an indication that her kidney's are failing.  The decision was made to put the catheter in now while her kidney's were still working a little so we wouldn't be put in an emergency situation if/when they failed altogether.
Thur Jan 27, 2000 223 Checkup at Texas Children's.  Hgb = 9.2, platelets = 307,000 and WBC = 12,000.  Creatinine = 3.1 and BUN = 39.  No significant change in counts or labs.  Darien's weight is back up to about 65 lbs.  Next appointment in 2 weeks.
Thur Jan 13, 2000 209 Checkup at Texas Children's.  Hgb = 9.8, platelets = 313,000 and WBC = 12,200.  Creatinine = 3.1 and BUN = 48.  Blood counts look good and kidney numbers look better.  Darien's weight is down to 60.5 lbs.  Need to start milk shakes again.  Next appointment in 2 weeks.
Thur Dec 30, 1999 195 Checkup at Texas Children's.  Hgb = 8.8, platelets = 235,000 and WBC = 13,700.  Creatinine = 3.6 and BUN = 65.  Stable - no significant changes.  Still hoping the Creatinine will start coming down (normal level is between 0.9 and 1.1).
Thur Dec 23, 1999 188 Checkup in College Station.  Hgb = 8.8, platelets = 220,000 and WBC = 15,700.  Creatinine = 3.5 and BUN = 52.   Checkup next week.
Fri Dec 17, 1999 182 Checkup at Texas Children's.  Hbg = 9.5, platelets = 161,000 and WBC = 14,900.  Improvement in hemoglobin is a good sign, but her kidney function numbers got only slightly little worse, although not as high as the highest they've been.  Dr. Krance said that her blood looks a little better under the microscope, too.  Darien's next appointment will be one day next week in College Station, just to check blood counts and such, then back to Texas Children's after Christmas.
Wed Dec 8, 1999 173 Checkup at Texas Children's.  Hgb = 8.7, platelets = 183,000 and WBC = 11,100.  Blood counts still look good, and the kidney function numbers finally showed some signs of improvement:   Creatinine = 3.5 and BUN = 44.  Tummy is still pretty round (fluid).   Next appointment is next week.
Fri Dec 3, 1999 168 Blood test at Scott & White in College Station.  No significant changes since last test.
Mon Nov 29, 1999 164 Checkup at Texas Children's.  Hgb = 9.8, platelets = 181,000 and WBC = 11,700.  Again, blood counts are good, but kidney function numbers aren't any better: Creatinine = 4.1 and BUN = 60. Still waiting to see what happens.  Next appointment is next Monday.
Wed Nov 24, 1999 159 Checkup at Texas Children's.  Hgb = 10.7, platelets = 165,000 and WBC = 13,100.  Blood counts look good, but kidney function numbers aren't looking any better:  creatinine = 4.0 and BUN = 59.  Still taking a wait and see approach.  Darien's energy level is high and seems to be feeling good.   Since being restricted on fluid intake, plus taking a diuretic (to help ease fluid retention), she is a bit dehydrated.  Can increase fluid intake a bit.  Tummy is still round, but not as much as last week.  Next appointment is Monday.
Sun Nov 21, 1999 156 Going home today.   Darien seems to be doing fine.  They aren't really going to change her treatment right now.  She is still on blood pressure medication and watching her fluids, in and out.  She will go back this next week for a checkup to see how the kidneys are doing.  They are hoping they kidneys will sort of take care of themselves.
Sat Nov 20, 1999 155 More of the same.   Darien has lost quite a bit of fluid.  Her tummy is still pretty round, but it should decrease in a few days.  Her blood pressure seems to be doing well on medication.  Kidney problem is still there, but doesn't seem to be getting worse (at least not too fast).  Creatinine = 3.7 and BUN = 52.
Fri Nov 19, 1999 154 Darien is feeling pretty good today.  Can't really tell anything is wrong.  They gave her a unit of blood today.  They think her low Hgb is also due to her kidney problem.  Blood pressure is able to be controlled with medication.  They have her on a low sodium diet and have restricted the amouont of fluid she can drink.
Thurs Nov 18, 1999 153 Doppler ultrasound showed everything to be moving like it is supposed to.  We also saw a kidney specialists who is not sure why her kidney is not doing to well.  He would like to do a kidney biopsy, but Darien's BMT doctor thinks that what is wrong with her kidney's occurs occasionally about this time in some patients and is due to the radiation she got right before the transplant.  Apparently, some sort of kidney damage that doesn't show up for a while and in some patients it clears up by itself and in some patients it doesn't.   Right now, they are going to admit her to the hospital to monitor and treat her high blood pressure and try to reduce the amount of fluid in he body.  Then worry about the kidney problem.
Wed Nov 17, 1999 152 More tests at Texas Children's, though pretty much the same as they did at Scott & White yesterday.   We really didn't learned anything new today.  Darien is retaining fluid in her tummy area and blood tests that her kidney is not functioning too well.  Plus, I think the extra fluid is causing her to have high blood pressure.  More tests tomorrow.
Tues Nov 16, 1999 151 Blood test at Scott & White in College Station.  Hgb = 7.8, platelets = 125,000, and WBC = 10,000.    Hbg is low.  Running tests.  Will go to Texas Children's in Houston tomorrow for more tests to try to figure this out.  More later.  Creatinine = 3.2 and BUN = 46.
Fri Oct 22, 1999 126 Checkup results at Texas Children's in Houston.  Hgb = 11.0, platelets = 125,000, WBC = 10,000, and ANC = 3,600.   Results of the bone marrow test on 9/24/99 indicates that Darien is a 100% Chimera   It essentially means that all cells that could be identified were Karis', which is good.  I'm not sure I'm using the term Chimera correctly, but this is how I hear it from Dr. Krance.  Darien is still on the same medications and continues to feel good.

Darien received permission to begin attending school on Nov 1.   Needless to say, she is excited.  In addition, her next checkup is around Nov 30 and at that time, I think they will remove her central line.  This is a tube that protrudes from the right side of her chest.  This is how they give intravenous injections and draw blood.  She hasn't required anything significant in a long time, so this tube is not really needed any longer, plus it requires daily maintenance.   Plus plus, she still has a portacatheter under her skin on her left chest which essentially does the same thing, but only requires monthly maintenance.  All in all, a good day at the doctors.  Whew!
Fri Oct 8, 1999 112 Blood test at Scott & White in C.S.  Hgb = 11.1, platelets = 140,000, WBC = 9,300.  The next checkup is at the Texas Children's Hospital on Friday 10/22.
Sun Sept 26, 1999 100 Day 100!  Darien spent most of the day at our church fall festival, then went to watch the end of one of Vincent's baseball games.  After the game, she invited all the players and families to join us at Wings 'N' More for dinner.  She had been planning this day for quite some time and apparently, Vincent's team did some planning of there own.  They gave her flowers to help her celebrate her day.  She was very pleased.  Darien ate till she couldn't eat any more.  She had a good day.

I think the next milestone will be when she can go back to school. 

Fri Sept 24, 1999 98 Results of checkup today:   Hgb = 11.0, platelets = 136,000, WBC = 10,400, and ANC = 5,304.  The next checkup at Texas Children's Hospital is in 4 weeks, but she will need to get a routine blood test here in College Station in 2 weeks.

Darien had a bone marrow aspiration today.  We'll know the results in a couple of weeks.

Sunday is the big day; day 100.  Darien shouldn't be restricted too much any more on what she eats, including being able to go to restaurants.   The first place she wants to go to is Wings N More.  That's where we'll eat Sunday evening.

Darien is also not restricted on too many other activities, except school.  She is back taking dance lessons 3 or 4 times a week and enjoys getting out to see some of her friends.
Fri Sept 17, 1999 91 Results of checkup today:   Hgb = 10.5, platelets = 145,000, WBC = 13,200, and ANC = 7,128.  Next checkup is next Friday when they will do another bone marrow test.  Darien was also able to stop the cyclosporin today.  The only medication Darien is on right now is:   Penicillin (250 mg tablets twice a day), Atovaquone (3.5 ml liquid once per day - replacement for bactrim), Clotrimazole (10 mg tablets four times each day)
Fri Sept 10, 1999 84 Results of checkup today:   Hgb = 10.2, platelets = 149,000, WBC = 10,400 and ANC = 4,680.  Next checkup is next Friday.

Darien is still feeling great.  She started homebound schooling Wednesday and believe it or not, she is glad to be doing homework.  She is still anxiously waiting for day 100.
Fri Sept 3, 1999 77 Results of checkup today:   Hgb = 10.1, platelets = 136,000, WBC = 9,600 and ANC = 3,936.  Next checkup is next Friday.

Good news.  Darien got the ok to come home today!  She's been waiting for this day for quite some time and is very excited.   The next milestone will be reaching 100 days since BMT.  This is when she will be able to eat out at restaurants; she has it all planned out.  Darien still cannot attend school (too many germs), but she will be starting homebound school next week.   They still say that it will likely be after Christmas before she will be able to go back to school.  Darien looks and feels good.  We are all very proud of her and glad to have her home.
Mon Aug 30, 1999 73 Results of checkup today:   Hgb = 10.5, platelets = 127,000, WBC = 8,800 and ANC = 2,552.  Next checkup is this Friday.
Tues Aug 24, 1999 67 Results of checkup today:   Hgb = 10.3, platelets = 128,000, WBC = 8,600 and ANC = 2,600.  Not another checkup until next Monday!
Fri Aug 20, 1999 63 Results of checkup today:   Hgb = 10.0, platelets = 101,000, WBC = 9,600 and ANC = 3,168.  Overall, a good checkup.  Darien continues to feel fine.
Mon Aug 16, 1999 59 Results of checkup today:   Hgb = 10.3, platelets = 71,000, WBC = 10,200.  Darien is feeling good and doing exercises.  Her weight has remained the same since released from the hospital.
Sat Aug 14, 1999 57 Final dose of antibiotics at Texas Children's Hospital as an out patient.  Regular check up Monday.  No platelets since July 20 and no GCSF since July 19.
Fri Aug 13, 1999 56 Released from the hospital late today, but she has to return first thing Saturday morning for a final treatment of antibiotics.  This a.m., Hgb = 8.6 platelets = 41,000 WBC = 8,580 and ANC = 5,320.  
Tues Aug 10, 1999 53 Regualr check up today:   Hgb ~10.5, ANC ~3,500, and platelets ~52,000 (platelets climbing on their own?)   Wouldn't you know it, ran a fever while at the doctor's.  Darien was admitted to Texas Children's today and will stay a minimum of 1 to 2 days.
Thur Aug 5, 1999 48 Regular check up today:   Hgb ~7.2 and platelets ~42,000.  Everything is holding steady, but decided to give Darien a partial unit of blood today.
Mon Aug 2, 1999 45 Regular check up today:   Hgb ~7.9, ANC = high, platelets ~42,000. 
Thurs July 29, 1999 41 Nothing going on today - just hanging around the house.
Wed July 28, 1999 40 Hemoglobin dropped a bit more to 7.4, but Retic is up slightly to 3.3%.  They are holding off giving Darien blood hoping she'll start making her own.  Platelets = 36,000; falling, but not very fast.  WBC = 8,080 and ANC = 5,180.  This is good - no GCSF since 7/19.   Weight is steady and everything else looks ok.  Next appointment isn't until Monday.
Tues July 27, 1999 39 Results from Darien's bone marrow test conducted Monday July 19 are in and everything looks good.  In Dr. Krance's words, Darien is a "complete chimera". (You'll have to look that one up in your Greek Mythology).  It essentially means that all cells that could be identified were Karis', which is good.  Second, the Monosomy 7 was not present.   This is also good.  I'm not sure I fully understand it, but the Monosomy 7 was present (or abnormal) in Darien's cytogenetics tests prior the transplant. This wasn't good.   Appointment tomorrow to check blood counts.  They'll do another bone marrow test at around day 100.
Mon July 26, 1999 38 Again, no blood today.   Hemoglobin is holding just below 8, but her Retic is at 2.8%.  Retic is some measure of baby red blood cells and an indication that she may be starting to make her own.  Platelets are still falling. WBC's are hanging in there at 5,500 with an ANC of 2,310.  Her weight was down just a bit.   Keeping an eye on red blood cells - another appointment Wednesday.
Sun July 25, 1999 37 Darien looks good and sounds good.  She's eating well and moving around. Dr.'s appointment tomorrow.
Fri July 23, 1999 35 Checkup at TCH.  No blood today.  Will try to wait until Monday.
Wed July 21, 1999 33 Checkup at TCH, everything's ok, and off to Conroe.  Will go back on Friday for a unit of blood.
Tues July 20, 1999 32 Received platelets today, no results from the bone marrow test yesterday.  Got the word that Darien can get a little further away from the medical center.  Tomorrow, she's going to stay at her grandparents near Conroe.  No more GCSF.
Mon July 19, 1999 31 Check up today.   Hemoglobin doing ok, ANC ~480 and platelets low.  Will get platelets tomorrow and a shot of GCSF today to help boost the ANC.  Darien is eating well enough to get off the TPN.  Had a bone marrow test today.  Don't know the results yet.
Sun July 18, 1999 30 ditto yesterday - Dr's appointment tomorrow.
Sat July 17, 1999 29 Everything's about the same.  Progressing ok.
Fri July 16, 1999 28 Not much activity today - just hanging around the hotel.  She did make it out to a park for a bit, but that's about all.
Thurs July 15, 1999 27 First check up at Texas Children's since being released.  WBC = 3,100 and ANC = 1,085.  Hemoglobin is good and platelets are falling.  Other chemistry's look good.  Her weight is down a bit; they would like her to drink more liquids.  She's trying.  The next appointment isn't until Monday.
Wed July 14, 1999 26 Nothing planned today.   Blood pressure high, more Nifedipine.
Tues July 13, 1999 25 Released but confined.   Darien says that it is good to get out of the hospital, but she still must stay pretty much in her room.  Avoid crowds.  She is eating a bit.  Hopefully her appetite will continue to improve.  Blood pressure high, but a dose of Nifedipine lowers it.
Mon July 12, 1999 24 WBC = 3,680 and ANC = 1,550. (still no GCSF)  Woke up in a great mood; today, Darien gets out of the hospital.  She can't come home yet; she must stay near the Texas Children's for a while in case of an emergency.  While out of the hospital, she will have periodic checkups at the Texas Children's Cancer Center's Clinic to check her progress.   Darien received 1 unit of blood and 1 unit of platelets before they let her go.   Since the Ronald McDonald House is full, we will be staying at a hotel nearby.   For those interested in details, the following are the medications she will be on.
TPN - 12 hours during the night (intravenous food supplement)
Cyclosporine to prevent graft vs. host disease
Bactrim to prevent bacterial infections
Penicillin to help her immune system because she doesn't have a spleen
Zantac to prevent stomach upset
Lasix to decrease fluid retention
Peridix and salt water mouth rinses
Nifedipine when diastolic blood pressure gets above 83
Potassium powder supplement
Sun July 11, 1999 23 Still doing well.   She will likely get out tomorrow.
Sat July 10, 1999 22 Still doing well and eating a small amount.  Received a unit of platelets today.  Darien sounds good over the phone; animated voice and everything.
Fri July 9, 1999 21 Darien is doing well.   There is still talk about letting her out early next week (Monday?).  She will still be required to stay "close" to Texas Children's for a while, though.   WBC ~ 10,000 and ANC ~7000.  No more GCSF for now (good).  Note:   WBC = white blood cells.  If WBC is low, there is a risk of infection.   Normal range is between 4,000 and 11,000.  ANC = absolute neutrophil count = WBC x (segs + bands).  Low ANC, below 500, more susceptible to infections.   Above 1,000, probably o.k.  (segs and bands are the types of WBC that protect against bacterial infections.)  During chemo and radiation and the first 15 days after the BMT, Darien's ANC was at 0.
Thurs July 8, 1999 20 WBC ~4300, ANC ~3800.
Wed July 7, 1999 19 WBC ~ 2100, ANC ~1700.   Trying to eat but having trouble keeping food down.
Tues July 6, 1999 18 ANC = 710.  Had a pretty bad bloody nose this morning = received more platelets.  Blood pressure running a little high this evening.
Mon July 5, 1999 17 WBC = 340 and ANC = 220.   Temp spiked up to about 101 but didn't stay.  Oozing blood in mouth area; received platelets.  Mouth area seemed to be getting better today and by this afternoon, Darien also seemed to be in a little better spiritrs.  Unless an infection sets in, the next few days should see vast improvements, including eating and backing off medications in preparation for an exit.  Kind of quiet this holiday weekend, not many visitors.  Just as well, until this afternoon, she would not have been much company.   She is progressing exactly as expected (hoped).
Sun July 4, 1999 16 WBC = 140 and ANC = 70.   Her temperature is cycling between normanl and about 101 F.  Cheeks don't look quit as puffy, upper lip looks good and lower lip looks much better than yesterday, although still very puffy.  Tongue also still hurts.  Still must be painful (or uncomfortable) to talk - she doesn't like to even open her mouth.  They have cut pain medication in half, although she has that handy button for rough times.  She's drinking a bit, but not eating.  Continueing with GCSF today.
Sat July 3, 1999 15 Finally, signs of activity.  WBC = 220 and ANC = 40.  Not much, but they see some segs, the beginning of Darien making her own cells.  She will get a shot of GCSF to help accelerate the immature cells to mature cells.  Her WBC should increase more and her mouth should begin to heal.  Darien still doesn't talk much; I think it is just too uncomfortable.  The doc's say that she should be past the critical part of catching infections and things should start to heal as her counts come up.  Still not eating, but she is drinking a bit.  Her weight is higher than when she arrived, but it is down from a few days ago.  They have reduced her fluid intake, plus she is getting rid of fluids somewhat better.  She also really hasn't gotten much of a fever for quit a while.
Fri July 2, 1999 14 Everything is about the same.  WBC = 130 and ANC = 0.  Still no signs of immature cells, but it shouldn't be much longer.  Darien got up and walked and did some excercises with a physical therapist.  She is constantly rinsing her mouth out with salt water trying to loosen stuff up and wash it out.
Thurs July 1, 1999 13 Still about the same.   WBC is hovering about 100 to 150.  ANC = 0.  No signs of immature cells yet.  Platelets low, received 1 unit.  No change in the mouth.  Lips have a big sore on one side.  They look like they hurt.  Darien walked a bit and excercised with a physical therapist.
Wed June 30, 1999 12 Blood counts a little low today; received 1 unit of blood.  Mouth about the same.  Sores not healing real fast, but not getting worse.  Lips are drying out and oozing a bit and Darien is retaining a little fluid.  They'll switch some medications around a to see if they can reduce some of the swelling.  Otherwise, everyone is doing o.k.
Tues June 29, 1999 11 About the same as yesterday; mouth and lips swollen.  Sores in mouth look like they may be healing and throat does not hurt.  She is drinking some, but still not eating.  Also, it is still hard for her to talk, but you can understand her if you listen close.   Platelets and blood counts holding.  So far, everything is about as expected.
Mon June 28, 1999 10 A reasonably good nights sleep; only up 3 or 4 times.  Not much change today, but certainly no worse.   Mouth, tongue, and lips are still swollen and Darien is still rinsing as often as possible.  No fever either.
Sun June 27, 1999 9 Pretty much the same as yesterday.  She didn't need any blood yesterday and got a total of 2 units of platelets yesterday.  Darien started rinsing her mouth with salt water and once she got over the fear of it hurting, it seemed to help clean her mouth out.  It is still swollen and she can still barely talk, but she's trying.  Darien had lots of visitors today and she sounded very tired tonight.  Hope she can get a good nights sleep.
Sat June 26, 1999 8 Didn't sleep much last night; trouble swallowing and fluid accumulation in her mouth.  The morning was pretty difficult.  Her platelets were low and the sores inside her mouth were oozing blood.  Mixed with saliva, it became a gooey mess in her mouth that was difficult to spit out, especially with fat lips and cheeks.  They infused platelets as quick as they could and she spit blood and goo for several hours.  They also increased pain medication again.  She looked exhausted.  Got it all under control finally, and she looked much better.  No more blood.  Another unit of platelets late today and probably a unit of blood during the night or early morning.  No more temperature.   So far, everything is going about as expected.  It is still too early to tell if the marrow is beginning to grow.
Fri June 25, 1999 7 Same.  Puffy cheeks and lips.  Can't swallow so it becomes difficult for Darien to sleep.   Everything accumulates in her mouth and then she has trouble spitting it out.   She seems pretty miserable.  She can get out of bed and walk a bit, though.   If it weren't for her mouth, I think she would feel pretty good.  Again, no talking.  We are getting pretty good and hand and grunt communication.  A finger over here means she needs a Kleenex.  A finger over there means she needs stuff for her lips, etc.  Two grunts means thank you.  Still a polite young lady.   They increased the amount of main medication to keep her comfortable.  Darien made me read all day until we finished the book.  We both liked it.
Thur June 24, 1999 6 Cheeks and lips are still puffy.  It is still difficult for Darien to swallow and talk.  She isn't eating or drinking anything, but is maintaining her weight fairly well due to intravaneous feeding (TPN).  Darien's 3rd and 4th grade teachers came to visit today and brought a book that they promised was good, "Ella Enchanted" by Gail Carson Levine.   I began to read it to Darien after they left, and we had difficulty putting it down.
Wed June 23, 1999 5 Cheeks were very puffy yesterday, but they say they aren't quit as bad today.  Lips look very puffy though.   Hgb was low this morning, so she got 1 unit of blood.  A rash broke out on parts of her tummy and legs, but she itches all over.  The Dr's. thought maybe the morphine was causing the itching so they swithed pain medication.  Again, not a lot of movement and low-grade temperature.
Tues June 22, 1999

4

 Mouth sores are upon us and boy do they hurt.  Darien is taking morphine for the pain, but the pain just seems to zap her strength.  Her temperature is creeping up so they switched anti-biotics.  Otherwise, not a whole lot of movement, just rest.  She's still eating very little, maybe a few bites of applesauce.
Mon June 21, 1999

3

 Darien woke up feeling ok today, but as the day wore on, she began to not feel very well.  Her mouth is beginning to bother her.  Her tounge and cheeks are swollen making it difficult to talk.  When she doesn't feel to hot, she tends to curl up in bed and sleep.  Her platelet counts were low, so she received 1 unit of platelets today.
Sun June 20, 1999

2

 The greatest gift one can have on Father's Day is to have his daughter call him on the phone bright and early in the morning and say, "Happy Father's Day, Dad!"  Darien sounded great today.   She had several visitors today and again, nothing significant occurred today.   Her immune system is non existant and she is on anti-biotics continually.   Hope she has a good night's sleep.
Sat June 19, 1999

1

 Darien slept very soundly, except waking up about every hour to go to the bathroom.  She finally stayed awake after about 7 am feeling pretty good.  She could finally see; her eyes didn't bother her too much any more.  She was looking forward to visits from Karis again and her older brother Vincent today.  Darien felt good most of the day except for a tummy ache.   She even ate a few bites and drank apple juice.  Other visitors today included the Ragsdale family, good friends who are moving back to West Point this weekend.  Of course, Papa and DeeDee and Aunt Cindy came back today.  24 hours since the BMT, they gave Darien a small dose of Methotrexate, a final chemo drug usually taken a few times after a BMT.  It was a busy day for Darien (lots of visitors) and she fell asleep early tonight.  A pretty uneventful day and so far, everything is going as planned.
Fri June 18, 1999

0

 Radiation began early today with her second and final treatment at around noon.  She was very tired today, just like yesterday.  Eyes still hurting.  An eye doctor came to look and concluded that her eye problem was another rare side affect of Ara-C.  She prescribed eye drops.

Valerie brought Karis (Darien's younger sister, 4 yrs old) the donor to Houston at 8 am to get started.  Karis got a tour of the operating room etc., then came over to see Darien.  Because of her age, she couldn't come to her room, be we managed to wake Darien up and wheel her down to a looking glass type of room where they could talk via a phone.  It was a very heart breaking moment to watch.  Darien really hated to see Karis go through this for her.

Karis' operation began about 2:30 and finished about 3:30 pm.   They made about 40 pokes with a needle in her left and right hips and recovered about 160 cc of fluid.  They took the fluid to a lab where they had to process it.    Mean while, Karis went to recovery and after a couple of hours, she was released.

Karis' bone marrow was brought to Darien's room about 5 pm and began infusion about 5:30 pm.  Darien was pretty out of it and slept.  About this time, they allowed Karis to come back to her room for a bit.  Another heart breaking moment when Karis crawled onto Darien's bed and Darien reached out her arm to touch her.   Karis wasn't feeling too good and neither was Darien, but without speaking a sound, they managed to say a thousand words.  Darien even opened her eyes a bit to see Karis. 

The transfusion was sort of anti-climatic.  In fact it would have been down right boring had Karis not thrown up all over her Mom and Dad.  That kind of ended the party and everyone (Valerie, Karis, and Valerie's mom and dad) left.   John's sister Cindy hung around a bit longer.  The rest of the evening was pretty uneventful.  It took about an hour to transfuse the marrow.
Thurs June 17, 1999 Two more radiation treatments and an MRI of the head.   It confirmed the CAT scan that nothing was wrong.  They now think it was a side affect of one of the chemo drugs, Ara-C.  (FYI, the other chemo was Cyclophosphamide.)  Most patients recover without long-term damage.  Prior to radiation this morning, Darien was speaking fine, but afterwards, her speech was a little slow.  She didn't feel too good all day, real tired, so it was hard to tell if her speech was really slurred or she was just too tired to speek.  I guess the Total Body Irradiation (TBI) takes its toll.  In the middle of the night, early Thurs morning, she began complaining about her eyes hurting, especially when she tried to open them.  They seemed to be ok when she had them closed.  So, she spent the whole day with her eyes closed.   This didn't help her stability problem, either.
Wed June 16, 1999 Darien got 2 more radiation treatments.  She was awake and alert most of the day, but her speech was still slurred and you had to listen hard to understand her.
Tues June 15, 1999 Darien had a sort of scary day.  She had a radiation treatment early, but as the morning progressed, she began to deteriorate.  Her speech became slurred, vision blurred, and legs were wobbly.  Her blood counts also continued to drop.  Several specialists came in to check on her and tentatively they have concluded that she has had a reaction to one of the chemo drugs.  They did a CAT scan of the head (brain) and everything looked normal up there.  They are checking a few other things, but they think this condition will cure itself shortly.  Needless to say, she's not feeling too hot right now, and neither are her parents.  She had more radiation in the afternoon.  She will continue to get radiation twice a day for the nex two days.  Then, on Friday, Karis will be brought in for the actual transplant.  It should be sometime Friday afternoon.  Darien got a unit of platelets today.
Mon June 14, 1999 Darien slept in Monday morning till about 11.  She received her last chemo bag about 8 am.  Starting on Tuesday, she will get radiation.   Again she didn't move around much, running fever etc.  Her WBC are very low and hemoglobin and platelets are also getting low.  Since she hasn't been eating, they started her on a feeding tube for 12 hours during the evening and night.
Sun June 13, 1999 Sunday's chemo was about the same as Saturday.  Again, Darien didn't eat and she stayed in bed most of the day.  She had several visitors:   Grandpa Jochen (John's dad), Aunt Cindy (Johhn's sister), and Papa & DeeDee (Valerie's parents).  Paige (Darien's cousin) also came but she couldn't see Darien because she is only 8.  You must be at least 10.  Again Darien had a fever most of the day and night.  She didn't sleep much.  Getting up a lot to go to the bathroom, nurses waking her up to take temp, blood pressure, and to take pills. 
Sat June 12, 1999 They began chemotherapy Friday evening and continued most of Saturday.  Darien felt pretty sick to her stomach most of the day.  She felt tired and slept quit a bit.  She is also not eating much.  Vincent came to visit part of the day and this seemed to pick up her spirits, but as the day wore on, she wore out.  Darien began running a fever in the afternoon that got up to 104.6 at night.   It finally broke early Sun morning.
Fri June 11, 1999 The biopsy came back negative so they decided that she could begin the preparation process for the BMT.  They took measurements of Darien in preparation for radiation, did a base-line CAT scan and EKG.  They should began chemtherapy in the evening evening.
Thur June 10, 1999 There was never really any conclusions about the MRI, so they decided to do a liver biopsy to be sure.  They did the biopsy and installed a central line at the same time.  Darien is doing fine now and got to her room about 6 pm.   Assuming the biopsy doesn't reveal anything surprising they could start chemo sometime tomorrow.
Wed June 9, 1999 Valerie and Darien got to Texas Children's at about 1.  They immediately wanted Darien to get another MRI of her abdomen area.  It seems that the MRI she had last week at Scott & White in Temple showed something strange near her liver that folks weren't too sure about.  They are going to try to get the new MRI interpreted first thing in the morning so plans can be made as to how to proceed.   Darien and Valerie are staying with Darien's god parents (Allen and Linda Shook) tonight in Houston.
Tues June 8, 1999 Getting ready to go to Texas Children's tomorrow.  Valerie will take Darien to an appointment at 1 pm. 
June 4, 1999 1 unit of platelets in Temple.  This should last until she gets to Texas Children's next week.  As we know it so far, Darien has an appointment with the Dr.'s at Texas Children's on Wednesday to sort of go over everything and review the floor/room she will be staying in.  On Thursday, she is scheduled for surgery to install a Central Line, then will begin Chemo either Thursday or Friday.  The actual Bone Marrow Transplant will take place on the 18th.
June 2, 1999 More tests in Temple.  Hopefully this is it until next week.
May 31, 1999 Back to Temple for more tests.  These tests are requested by the staff at Texas Children's in preparation for the Bone Marrow Transplant.
May 30, 1999 Darien got one more unit of blood then was let out to go home.
May 29,1999 Darien had a bloody nose while at DeeDee's how and we couldn't get it stopped.  Valerie took her to Temple where they gave her 1 unit of platelets and 1 unit of blood.