Friday, January 03, 2003 at 09:04 AM (CST)

Hi Everyone and Happy New Year!!!

It has been a while since our last update because the news is continuing to be good in terms of Abigail's recovery. She went to the clinic on the 27th of December and her counts really showed great improvement across the board. It has been a while since I have seen a counts sheet with so many values in the normal range!!! Her hemoglobin has risen to 10.8 first of all, with her hemacrit level rising as well to 30.6%. That has been the most dramatic improvement along with her platelets, which were up to 197,000. The white blood count was a little low at 3,900 and her ANC was at 2,800. All of her blood chemistries were normal. They drew a new blood sample for her engraftment study but we still have not received its results. During clinic she received what we believe will be her last dose of IVIG, thank God, and also received Pentamidine. It was an all day affair but Abigail was lucky enough to have Madison with her to play in the treatment room. Abigail always gets bad headaches from the IVIG treatments three days later. Physically, Abigail continues to gain strength and is doing well. Her emotional state though has been a little edgy. She cries easily and was sad at times around the holidays as she tries to forget her past couple of years and what she had missed. She gets very clingy and does not want to be left alone. She has to always have someone near her.

The good part is that she is easily distracted from this and has been totally engaged with her best friend Madison and sister Macy. Abigail and Madison have been inseparable during the holidays. Madison even came running across the street New Year's Eve to be with Abigail as they brought in the New Year. Those gals have been having a great time playing together. Abigail's Uncle Alfredo, Auntie Brandy and cousin Melanie were also up for a wonderful visit and she loved that as well. We have been exposing Abigail a little more to things, which has opened up old places to return to visit. She went with her whole gang to the dairy farm to watch the cows getting milked as she slurped on homemade chocolate ice cream. She has been out shopping at non-busy times more and more. We plan on a daddy and daughter day at the Wild Thornberry movie today while Mom goes out and gets a break. So the News is good as we start the new, and hopefully healthy, year. We continue to pray for positive, 100% engraftment results. God bless you all. Love, Bert

Thursday, December 19, 2002 at 06:12 PM (CST)

Dear Family, Neighbors, and Friends far and wide;

Abigail is progressing along in her recovery and continues to do well since my last update. Her blood counts have been improving or holding steady with her blood chemistries normal and steady. She has had no Graft vs Host symptoms and is really gaining strength every day. Her White Blood Count and platelets have achieved normal range at 4,600 and 153,000 respectively. Her Red Blood Count is still below normal at 9.9 but has hovered at 10 now for over a month and she has not required a transfusion now for over two months (which happens at 8.0), which is awesome. She has surpassed another transplant day 100 and so her immune system is now basically recovered from bacterial susceptibility. She is still virally susceptible so we still are very cautious with crowds and Abby is still in her homebound education, which she loves very much. It still makes it lonely even though we are starting to open up her exposure a little more. But it will come to an end and we can get on with being "normal" again soon.

Now for the tenuous stuff. Her last two engraftment studies have come back with mixed results. At the end of November the study showed that she had slipped to 86% donor in the granulicytes and 100% donor in the monocytes. This was after three straight 100% readings in that cell line. The next test taken two weeks later in mid December, came back up to 100% in both cell lines again. We don't know what that means but it makes us extremely nervous. Because of the 86% "anomaly", we will continue testing the engraftment every two weeks. We were just on the cusp of going to once a month. We believe the power of prayer is continuing to help our Abigail, so we will continue to pray for 100% results in both cell lines. We want to be done with transplants!!! If her engraftment holds at 100% for a couple of more tests we can probably start spacing out the tests more. She will get her last IVIG round next week after Christmas and will have to do around six more months of Pentamidine (which helps protect against pneumonia) and then after that we will see about taking out her central line, one of the last vestiges on the road to recovery. We pray for that day dear Lord!!!

On the homefront, we are all excited to be having Christmas and trying to be extra careful in not getting sick!!!! We will have Christmas at home this year!!! We have the decorations up and the tree awaiting the gifts of Christmas morning. Best of all, we have each other and that is what it's all about. What a gift.

Wednesday, December 04, 2002 NEW PHOTOS!

Hi Everyone,

From all of us here in Virginia, we sincerely hope you had a wonderful Thanksgiving and may you be blessed with a most joyous holiday season. We most certainly are and we had an absolutely wonderful Thanksgiving celebrating being home with Grandma and Grandpa Barker, who drove down to visit from Connecticut. Abigail has been doing extremely well and has been improving on her red counts. Her hemoglobin came in at 10.3 during her last check over a week ago. We also received word that her third engraftment study came back at 100 percent donor in both cell lines and they extended her checkups now to once every two weeks! Her ANC has improved to over 1,600 and her platelets dropped slightly to around 139,000. All of her blood chemistries came back normal and she is really doing well.

Although we are still taking relaxed neutrapenic precautions because of Abigail's still developing immune system state, she participated in the Norfolk Christmas Parade riding on the EDMARC Hospice for Children's Harry Potter Christmas at Hogwart's float. She had a blast. She gets very lonely being cooped up at home and it was good to get her out. Her direct exposure to people was kept to minimum and continues today. So far so good because she has had no problems..... knock on wood!!!! We're counting on having our first Christmas in three years, and we're having it here at home, since she has not gotten to enjoy her last two Christmas'. In 2000 she was in the ICU fighting off septicemia and last year of course she was in the midst of her Bone Marrow Transplant. Just Abigail, Suzanne and I... quiet, but thankfully blessed. We know all of our family is with us in spirit of course, and not to mention all of our friends far and wide that we have gained on this long journey. Thank you so much for your continued and ongoing support and encouragement!!! So this weekend is tree hunting and decorating time. She gets so excited it's hard to contain her but I'll tell you it is a pure joy to see. Her smile really lights up a place! I wish I could package it and send it to you to warm your hearts and light up your souls. Today we just had a little bit of snow and Abigail was so excited she could not get outside fast enough to catch some flakes in her mouth.

Abigail's homebound schooling is going real well and she enjoys it very much. She loves school. Her speech lessons have been going very good as well and she is now just on a "maintenance" schedule of class once a month to keep her honest. That's it from here. God bless you all. Love, Daddy Bert

Friday, November 22, 2002 - NEW PHOTO

Greetings:
I am pleased to post a new picture of Abigail in the photo section where she looks like her pre-illness self! I don't know if we are done with cancer and engrafment issues but I do know that right now is a good period.
My little Earth Angel is feeling better. She told me the other night that she feels like she has been climbing a huge mountain for a long, long time and that she is near the top.
The future is unknown, thank God, because I would have started grieving the day Abigail was born if I knew what was up ahead. Each day is one more day, each week is one more week, and so on. Please enjoy your life.
Love,
Mommy Suzanne

Tuesday, November 19, 2002

Greetings:
Today Abigail went to the Clinic for her weekly checkup and blood draw. We got the results of her counts this evening and everything is looking good. Her ANC (ability to fight infection) is 1400, her platelets are 151,000 (in the low normal range!), and her hemoglobin (red cell) count is up from 9.6 to 9.9 (normal is 12.5-15). The hemoglobin is at least heading up. We do not still have the results of her engraftment study that was taken last week.
Abigail is beginning to feel much better. I am so happy for her because she has been through hell. She is enjoying her homebound teacher. She says that math is her favorite subject. She also has a real nice homebound Speech teacher. She just loves learning.
Please continue to pray that Abigail stays healthy and continues to grow stronger.
Love,
Mommy Suzanne

Monday, November 11, 2002 at 06:57 AM (CST)

NEW UPDATE ON BOTTOM OF PAGE!

Hi Everyone!

I wanted to share some good news in that Abigail is doing better by the day. Her last engraftment studies from a couple of weeks ago shows that she is 100 percent donor! Woo hoo!! Her counts are stable... yep, even the reds. Her platelets dropped slightly to 139,000 but everything else is holding. Her white count is slightly improved. We go back in for her weekly checkup tomorrow and will see where we are but I am optimistic. Her lips are getting redder every day and she seems to have more color. I hope that means that her red count is coming up!

Things are truly getting better. Abby has been riding her bike in the cul-de-sac where we live more and more. I can see her gaining strength. She is eating very well although her last weight check was stable at 42 lbs. We'll just keep feeding her. She has been really excited about seeing her friends and asks about them all the time and invites them over or joins them outside a lot... of course not as often as she would like.

Today, Abby gets a visit from her speech teacher. She is a talker as most of you know, but has problems with certain letters and has been enrolled in speech for three years now. She likes the company, of course, and likes the distraction. Her first grade homebound classes have been going well and she is back to being her antsy self. Sometimes she just can't keep her fanny in the chair or just wants to leave to play dolls. Her nights, however have been frought with nightmares from her treatments. She also has been waking up with occasional leg pains which always worry us. It goes away after she takes tylenol. Sometimes I think she is having muscle pains from her excercise. Hard to tell if that is it but considering how long she has been on hospital beds, I can't help but think it might be a contributor. Abigail also gets very clingy at times at home and is frightened to be left alone. We just got her and Mom a set of walkie talkies and that seems to help. We are planning to take her to see her therapist next week and get her restarted on her theraphy to help her get through her continued and justifiable fears. She is a wonderful lady and really helps Abby a lot. It was nice that we were able to get restarted with her again. We're optomistic that she can work through this.

On the entertainment front, We went to a matinee on a weekday to see Santa Claus 2 and Abby loved it. She loved being out and was very diligent about wearing her mask. We don't have to tell her when to wear it, she knows and dawns it right away. We went at that particular time because the crowds are real light and it worked out well. She has also been invited to be on a Harry Potter float this coming weekend, I think, and join the local parade. She is very excited. She is also excited about her grandparents coming down for Thanksgiving next week. She worked hard getting decorations up. She is also very busy planning for her favorite holiday... Christmas. As you all know, it has not been a good holiday for us these last two years. We were in the hospital both times. We are determined to have a good and healthy one this year so it is going to be very special.

That's the latest. We hope you are all well and thank you for your continued support, prayers, and encouragement. God bless, Daddy Bert

Tuesday, November 12, 2002

Results from Abby's tests today continue to be positive. Her last engraftment studies came back 100 percent donor in both cell lines!!! That makes two awesome engraftment checks in a row! We will now shift to checking the engraftment every two weeks now instead of every week. Her counts continue to do well with red cells holding at around 9.6, platelets normal at 147,000 and ANC improved to 1,600. All her blood chemistries were normal. Praise the Lord!!! Love to all, Bert

Wednesday, October 30, 2002

Hello Friends and Family:
Abigail had a long day at the clinic on Monday (10/28/02). She needed to get her monthly four hour IVIG (antibodies) infusion and one hour Pentamamine (pneumonia protection) infusion, plus blood labs and a chest X-ray. Her lungs are clear on the X-ray and she is still on antibiotics but she continues to battle a cold and cough.
Today is her first day of homebound school with her teacher that she would have had if she could go to regular school. Abigail has been so excited she has been ready to jump out of her skin all day. Madison has the same teacher during the day so they are both excited. Madison told Abigail that Mrs. Close is "the sweetest person on the face of the earth". We are so blessed to have her teach our Abigail. The frosting on the cake is that Mrs. Larkin, her last year teacher, is going to come this week to teach a class for Mrs. Close because of conferences. Boy did that make Abigail even more excited!
Thank you for your continuing love and support. We feel it. Have a blessed day.
Love,
Mommy Suzanne

Saturday, October 26, 2002

NEW PHOTOS

Dear Friends and Family:
On Thursday night, Abigail was able to don her mask to join her Brownie troop for part of the induction ceremony where she received her pin and badges. With the love and support of the troop leader (Debbie) and the girls of the troop (including Madison and Caroline), Abigail has been able to earn badges at home. She was so happy to see her brownie sisters. It is a great group with an awesome leader. We are so blessed.
I will write later. Bye for now.
Love,
Mommy Suzanne

Monday, October 21, 2002 at 05:47 AM (CDT)

NEW PHOTOS!

Hi Everyone,

Abigail and Mommy made it home on Saturday afternoon thanks to Angel Flights. She is looking and doing well. She left Houston with other great news. She called me prior to her leaving to tell me her engraftment studies came back at 99 percent donor in both the granulocytes and mononuclear. With an error of plus or minus 5 percent, we'll just call it 100 percent. Her platelet count was near normal and her white count was also rising. Seems like the same story with the red count though, as that has dropped. Abby will go in to clinic tomorrow for blood tests, a weekly event until things stabilize. She is still taking her antibiotic, but that is it other than her normal central line care. After she returned, she developed a slight cough and started with a runny nose again so we are watching it closely as she is still immuno-comprimised. But all in all, she loves being home!

She arrived home to a decorated house, decorated by the neighbors. She wanted to play with her friends right away and had to much to do she almost forgot to eat. It was funny seeing her try to cram as much into a day as she could. Yesterday, we decorated for Halloween and just had fun being together. She enjoyed the company of Madison, Caroline and Macy and it was good to see her returning to normal. I feel very blessed. - Daddy Bert

Wednesday, October 16, 2002 at 05:44 AM (CDT)

A quick update from Dad:

Praise the lord and the power of prayer. Again, we are fortunate to say that Abigail's counts were improved on Monday to the point that she is being released to come home!!!!

What a ride and she continues to do well. As far as I remember, through the haze of my euphoria, is that her engraftment study rose to the lower 90 percentile and her ANC rose to 1,400. Her WBC and platelets improved to over 2,000 and over 130,000 respectfully, I believe. Her hemaglobin even showed modest improvement to 10.7, so the word was certainly good in all respects.

We are working the plan to have them return and it looks like they will be home sometime this weekend. The angel flight folks are once again getting their air force assembled for the four leg return home with the blessing of Abigail not having to wear her mask enroute. She had two questions prior to the results for Dr. Krance and they were if she could go home and would she have to continue wearing her mask. She got a yes on the most important one but will have to continue wearing her mask until probably 90 days post-PBSCT transplant. She was taken off Fluconozole and Acyclovire and she only has to take her antibiotics as a prophylaxsis. Hopefully, that will not be for long.

That's the latest and thank you all. God bless.
Bert

Friday, October 11, 2002

Dear Friends and Family:

Abigail and I went to clinic yesterday (Thursday, 10/10). We still need to stay in Houston until Abby's ANC goes up over a 1000 and stabilizes. Her ANC dropped from 900 to 800, her platelets dropped a bit as well as her red cells. We are also waiting on the results of another engraftment study (blood test) that was taken last Monday (10/7).

Please pray that everything is okay and that Abigail and I can come home to Virginia. We are weary.

Peace,
Mommy Suzanne

Tuesday, October 08, 2002

PS To those of you who know my Aunt Ethel (Ethel Barker Riggott), she passed away peacefully in her sleep two nights ago. She had a long, fruitful life and joins her husband, Cliff, who died 2 months ago. When Abigail saw Aunt Ethel last year, she told me there were 6 angels around her. So I know she was in good hands.

Greetings from Houston:

Yesterday we were at the clinic. Abigail's engraftment studies from the BMA last week came back. Her mononuclear engraftment is 88% and 89% in the granulocytes (where her cancer originates). Much improved over her previous studies prior to treatment. She remains leukemia-free. Praise God!

We are still hoping for the engraftment to go to 100% and stay there. We have another clinic appointment on Thursday (10/10) to check her counts. Her ANC (ability to fight infection) is still under 1000. Before she can come home it needs to be over 1000 and stable. She still has to take her meds in the mean time.

We had a great time after clinic at Auntie Carmen's house. We played UNO, watched cable TV, and had a wonderful meal. Alfred made sauce for the lasagna from scratch. Boy was it great!

Abigail misses Madison and Caroline so much! And I miss their Moms who are my friends.

Take Care and God bless you and keep you from harm. Thank you for all of the prayers. They work.
Love,
Mommy Suzanne

Friday, October 04, 2002

Greetings from Houston:

Abigail is so happy because her Grandma Barker is visiting from CT. She says Grandpa will do okay without Grandma as long as he can eat pie and watch TV.

We had a very busy week but not necessarily fun! Having Grandma here was a blessing and it brought her some happiness.

On Monday 10/1, Abigail had to go to the hospital clinic for labs and an office visit. Her ANC went up a little to 600 (still low - neutropenia is 500 and below).

On Tuesday 10/2, we were with Abigail at the clinic from 9-5:30 for IVIG and Pentamamine.

On Wednesday 10/3, we were at the clinic from 9-6:00 again. Abigail had a BMA and skin biopsy (to clarify which cells are Abby's and which are mine), followed by a red blood transfusion (hemoglobin was at 7.6).

On Thursday 10/4, she had to put in her school hours. That afternoon we took Abigail's grandma to the Houston Butterfly museum (during dinner time when it is empty). She wanted to go home fairly quickly. On the way home she had a horrible headache and was writhing with pain. I carried her up in my arms to the room and she had to lay flat on her back. She threw up two times so I gave her Zofran. She had a temperature that crept up to 100.8 --- she has to go to the hospital and be admitted when it is over 101. My Mom, Abigail and I prayed and prayed. I monitored Abigail's temp all night.

This morning Friday 10/5, Abigail's temperature was normal. Praise God! I am still checking her temperature in case it goes up again.
Please pray that Abigail remains healthy, fever-free, and that her engraphment goes to 100% and stays there with no GVH.

God bless you.
Love,
Mommy Suzanne

Saturday, September 28, 2002 at 08:03 AM (CDT)

Hi Everyone and this message is being brought to you by Daddy and Abigail, who is siting on my lap right now. Abigail says:

"I feeling good and I hope to be home soon. I'm having fun with daddy this weekend. Thank you for all your notes and prayers. I smiled big this morning as I was reading them. Hope to see all my friends soon."

Abby is doing really well. Her counts from Friday came back lower as expected but now we know it's all her new cells doing the work. Her ANC dropped to 520 so we are taking neutropenic precautions. Her hemaglobin dropped also from 8.7 to 8.0. We'll see where that brings us on the next test. Her platelets have actually risen slightly from 121K to 123K. Her peripheral blood engratment studies came back also improved and very promising. She is presently at 66% in the mononuclear and 79% in the granulocytes (where her cancer originates from). Much improved over her previous studies prior to treatment and they are expecting this to climb and are saying it is a very good result. Abby's Bone Marrow test is this Wednesday and she has quite a few IV prophylactic drug treatments to do this week with IVIG and Pentatymine.

I leave on Sunday evening to return to home and work but Abby will get to see her Grandma Millie from CT on Monday for a week. She is very excited about that. Additionally, when they get her engraftment study and results back from her marrow, chances are good she can return home and that makes her the happiest. She can't wait too see Madison, Macy, Mckenna and Caroline. She of course misses all of her pets as well.

That's all for here. God bless you all.
Love, Bert

Monday, September 23, 2002 at 06:45 AM (CDT)

DAY +18
Hi Everyone,

Abby is doing well and is still outpatient, with appointments every other day during the week to monitor her blood counts. Her last count looked really good with the white count well over 14,000 and her platelets around 140,000. Her hemaglobin dropped to 8.7 but overall things looked good. Her blood chemistries have been solid and they decided to stop the Neupogen (GCSF) on Friday. She is getting nauseous on occasion and has had off and on diarrhea that could be due to the antibiotics. The feeling I get though is that she is doing very well.

The RM House gave us a donated round trip ticket on Continental Airlines and so I'm planning to visit my girls this weekend. Abby is really excited and has started a list of "Daddy and me" activities. I have to bring the Candyland game and she told me to not forget to bring her a present. How can I not? Abby's Auntie Karen had to leave last week and we sure do appreciate her company and support. Auntie Carmen continues to take good care of them. They had a special visit this weekend from Ms. Beverly of EDMARC. Thay were very happy to see her.

Abby is continuing her first grade classes at the RM House. She has been doing well and still diligently wearing her particulate mask to protect her in her immunocomprimised state. She is still taking Ancyclovir and FK506 (Tacrolimus) which suppresses her immune system. The Docs were planning to take a peripheral blood draw for engraftment studies as a precursor to her Bone Marrow Aspiration test which should be on day 28 (Oct 3rd?). Hopefully, it will speed her return to home if things come back well. I know she is very anxious to get back home and see her friends. That's all for now.

God bless, Bert

Monday, September 16, 2002 at 07:15 AM (CDT)

Hi all,

A quick update on Abigail today. I wanted everyone to know she is doing well at the Ronald McDonald house. She is eating and taking her meds real well… well taking at least the meds that count. She is having trouble with the Cipro pills and that has been a no go. It is a prophylactic for viral infections so we’re just being extra careful. All her immune suppresant meds have been going well. She has been wearing her particulate mask wherever she goes and has been doing a good job. So far so good. They decided to start her on IV Neupogen, or GCSF, on Thursday. This is the same stuff they gave Suzanne to boost marrow production of white cells. Suzanne has to infuse this daily and it takes a pump and an hour of time to do it. Her counts on Friday for white cells were over 2,000. Her red count and platelets dropped over the week as expected. She will return to clinic today, and every other, day for counts and monitoring. We’ll see how things are going later on today but so far so good as we march along to day 28 and her marrow/engraftment check.

Abigail has restarted school again at the RM House which provides a good diversion. She diligently wears her mask whenever she leaves the room to go to events around the house. Her favorite meal of late has been Mom’s homemade spaghetti. She has been eating it like crazy. So that’s the quick update. Hope you have a blessed day. Love, Bert

Tuesday, September 10, 2002 at 09:23 AM (CDT)

Hi Everyone,

Abby was released last night from the Hospital and is now staying at the Ronald McDonald house with Mommy Suzanne and her Auntie Karen. I returned home Sunday and was back at work yesterday. Of course, we have to talk on the phone a lot because our separation was hard. Abby cried for a day but like everything else in her continued battle, she accepts the inevitable and just troops along... my hero!!! Knowing Abby was close to being released made the travel back easier. She has been doing extremely well, eating whatever she likes, eating well and holding it all down. When she found out her freedom could be gained by taking oral meds, she worked hard at getting, taking and holding down all of her meds. At last count she has to take five different meds. She is on an antifungal (Fluconozole), two antibiotics (Cipro and Amoxycillan), two immunosuppresant (FK506 and Ancyclovire) and of course, her vitamins (I know, I'm hacking the spelling). Her counts have remained stable with her ANC at 650, hemoglobin at 10.5 and platelets at 65,000, all depressed but right where they need to be at this point. Because of her excellent disposition, and her overall well being, the Doctors decided to release her from the hospital and have her come into clinic daily to have her counts checked and get a physical for any signs of Graft vs. Host symptoms. It's still too early to tell how the new graft is forming. We will probably not see any indications until the new cells develop in about another week. That's when the GVH symptoms will have to be closely watched for, with potential to attack any of her major organs. We pray for the best and her continued recovery.

To give you an indication of her health and disposition at the hospital right before I left, she helped me build a fusball table that was donated by the charity group for the transplant unit, His Grace Foundation. We also built a mini solar car, which we wired with a backup battery and raced around the halls. She was chasing it everywhere. She did not want to be confined to her room. At one point she insisted on staying in the playroom until another patient came out so she could befriend and play with them. As luck would have it, an eight-year-old girl, Meahgan, checked in and they played some fusball together.

Because she is back on the immunosuppresants, Abby has to wear a particulate mask whenever she is out in public. She certainly hates dawning that mask but knows she has to and reluctantly wears it. We're uncertain how long she will have to go through this again but the Doctor said she couldn't go to school this year. She faces another year in homebound class again and that breaks her heart. She loves her little classmates and was really looking forward to going back. Next year for sure!

Our neighbors took great care of things here in Virginia for us while we were gone. Special thanks to all, especially Samantha, Max, Caroline, and of course, Madison and Macy, for taking great care of all of our pets. What a blessing! Thank you! You made this difficult travel easier for us. God bless, Bert

As a post script, Caringbridge has changed and updated their web site and has changed it's domain name to a .org address. You should be automatically swiched to it but if you are having problems accessing the other pages, you need to change over to the new web site address. Here it is:

http://caringbridge.org/va/abbyallies

Thursday, September 05, 2002 at 05:33 PM (CDT)

Hi Everyone,

Today is a new DAY 0. Abigail's marrow clock restarts after she received her peripheral blood stem cells today at noon. They came as previously frozen from Suzanne's donation last week. To preserve the cells, they add a preservative called DMSO. This stuff is nasty. It smells like a refinery, or some sort of a solvent, and you can smell it as it is infused. Abby's body filters it out through her mouth and body fluids and it will take at least three days for it to be processed through her body. As soon as the transplant began, Abby started developing reactions like dizziness and shortness of breath. She said her throat felt restricted and she developed a slight case of hives. She also got very naseaus because of the taste of the DMSO in her mouth and she threw up. They administered Hydrocortisone and Ativan, in addition to all the pre-meds of Tylenol, steroids and Zantac, that helped her recover from the reactions which were probably primarily from the preservative. Very scary again but thankfully the transfusions went quick and that helped. She had two bags that went in over five minutes each. She had reactions with each bag. Then they monitored her over the next four hours and things went well after the transfusion. She began eating potato chips and ice cream. Now we will wait and see and hope to have her ANC above 500 for three days. Her ANC is now holding at 1,000 but should drop then come back up once the stem cells engraft. Then she can go outpatient to the Ronald McDonald House. The plan is for Abby to stay here in Houston until at least she gets another engraftment study done on her marrow, 28 days from now. They will also relook at her Marrow on day +60. Once the results come back favorably from her +28 day study, she will be able to return home. Because she is now on immunosuppressants once again, she will have to be socially isolated as before, and for the same lengths of time as a regular Bone Marrow Transplant (BMT). What a kick in the tail. This is a true mini-transplant with Abby having to redawn her particulate mask to go out of the BMT Unit.

Abigail had an echocardiogram done the day before yesterday and her heart functions have actually improved to low normal.... Awesome news. I was surprised it had gotten actually better!!! So some good news to share. She was transfused yesterday and her typing came back with her old blood type, O+. Her old marrow has indeed started to come back so it's good to treat her aggressively for graft failure. I did ask Dr. Krance about the chemo change and it is from her weakened marrow standpoint that less was best in the use of Fludarabine only as her transplant prep. The chemo treatments actually came and went with virtually little side effects as opposed to what we have seen before. She did get nauseous last night and was treated effectively with Phenegren. Today after her transplant, Abigail received a special visit from the members of the music group, THIRD EYE BLIND, Tony and Arian (hope I spelled that right)!!! Pretty cool and they played and sung her a song right in her room. I'll plan on posting some photos tomorrow. She loved the serenade and they are a great group. Thanks guys for the great visit!!

So now we pray for some but very little graft versus host issues and recovery of 100 percent donor marrow in her system. I also hope for her quick recovery and a short stay inpatient. May God continue to bless us. God bless you all as well. Love, Bert

Monday, September 02, 2002 at 05:27 PM (CDT)

Hi Everyone,

Abby was admitted uneventfully on Friday into Texas Children's Hospital. A good thing was she was admitted into her old room. She felt very happy and drew comfort in returning to her old room. Her counts had remained consistent with her platelets maintaining 115,000 and her hemoglobin dropping slowly. All of her urine and nasal cultures have come back negative. We were informed that there would be a modification to her protocol. Instead of two chemo drugs, Fludarabine and Melphalan that I mentioned before, Abby would only get one, Fludarabine. Her treatment consists of one dose of the Fludarabine once a day for four days. Along with the Fludarabine, she will also receive a monoclonal antibody named Campath, which is a type of immuno-suppresant. The fifth day is scheduled as a day of rest and she will receive Suzanne's Peripheral Blood Stem Cells on Thursday. We surmised that her less intensive treatment may be due to her good reports on her marrow, or perhaps that less therapy is needed when the marrow is not quite healthy to begin with from all of her previous treatments. Whatever the case may be, we are happy for less and we just never seem to ask all the right questions during the moment. I'll have to ask Dr. Krance about that at the next opportunity, if I can remember.

Abby has been tolerating her treatments well. The first Campath came with a huge headache. Campath is monitored closely because of reactions to the antibodies. She gets wired up as it is administered over two hours. She had to receive Morphine for her headache and finally got relief ten minutes after it was administered. She threw up as well and I thought it was going to be a long four-five days. However, the other two days have gone really well with slight side effects like a passing headache yesterday and slight cheek rash today. Really minor stuff with Abby feeling pretty well, playing all day and very alert and rambunctious. The Fludarabine has come with virtually no reactions thankfully. Abby's appetite has been good and she continues to eat well and maintaining weight. Grandpa Ortiz has been helping out a lot and keeping us in plenty of chow. We have now completed three treatments with one more to go tomorrow. Her counts, as expected, have begun to drop. Her platelets have dropped to 60,000 and her hemoglobin is now 8.3. Her ANC and white count have fluctuated but now stand at 1,930 and 2,130 respectively. She will be considered reengrafted when her ANC is 500 for three consecutive days after she receives her cells. Then we will be on the watch for GVH symptoms. Unlike her previous reboost of her marrow, Suzanne's stem cells will not have the T cells depleted. This will perhaps cause more intense reactions but we will pray they are minimal and she does well.

I will return home on Sunday for work but Suzanne's sister Karen will be here along with my sister Carmen to help Suzanne and Abby. We pray for a quick recovery and for our family to be rejoined quickly. Thanks for all your thoughts and prayers. God bless, Bert

Wednesday, August 28, 2002

Hi Everyone,

Suzanne went in to the Methodist Hospital, right next to TCH, to get her stem cells "harvested" via leukophereisis, or like they normally do platelet donations, this morning. She started receiving her "fire ant" shots of Neupogen or GCSF on Saturday after her serology looked good. She received two shots a day, one in each arm at the hospital. She did not feel well from the shots with weird body aches, bad bone pains along with some heart palpitations as her marrow was stimulated to "hyper-drive". All of these are normal side effects of the drug. We went in yesterday for blood tests and counts to see if she was ready to donate and the counts came back indicating there were enough cells. It will be an all day thing for her hooked up to the machine for about four to five hours. They will count the cells during the processing, and let us know tomorrow if she has to return to get more collected. Abby will be admitted this Friday to start her chemo after the cells are successfully collected and stored. Her chemo will be for six days so she will get her cells next Wednesday hopefully. She should start to feel well soon after. To follow up, some more great news came Friday when we found out Suzanne was to start her shots. Abby's final pathology came back from her Wednesday tests and she is cancer free. Marrow and spinal fluid were clear as Dr. Krance had reported to us earlier. Praise the Lord!

Abby has been attending school here during the day and had her first weekly speech class on Monday. She loves the activities here at the House and has been having a fairly good time. She is fraught with worry, about Mom's procedure today and her hospital stay starting on Friday. She has been requiring lots of extra comfort and has been more clingy, especially to Suzanne, lately. She hates to be on her own ... except only in class.

Her Grandpa Ortiz came down for a week to make her special chicken soup. He loves to cook and is working on stocking us up. Abby was all smiles yesterday when he arrived. We all hope to catch an Astro's ball game tonight with tickets we received from the TCH social worker. Any distractions help and it will give Suzanne a recovery break. That's it for now. God bless, Bert

Thursday, August 22, 2002 at 04:30 PM (CDT)

Hi Everyone,

Prayers have certainly helped and been answered. We pass to y'all (some friendly Texan colloquialism) a huge thank you for all your offers and gifts of help and support. We arrived in Houston Tuesday afternoon and settled into the Ronald McDonald House here as before. It’s amazing that some of the families that were here during Abby’s transplant were still here continuing treatment, many not from this country. Children growing older in the shadows of the Medical Center.

We went in on Tuesday for our initial consult and checkups. Abby’s counts came back as well as they have in Virginia. Her chemistries were all good. Her platelets were down slightly to 110,000, white count at 3.13 and her hemoglobin was at 11.4 (she was transfused a week and a half ago). We then returned yesterday for a Bone Marrow Aspiration and Lumbar Puncture. That is always nerve wracking and makes for a day full of anxiety, from the time we arrive until we receive the results. They sedated Abby and she sailed through her tests. She woke up uneventfully and cheerful which was nice. Since they only sedate with one drug, Propoval, her recovery is quick.. We then went home to await the results and watch a family movie… the new Peter Pan flick, Return to Neverland… ironic, isn’t it.

I received a call from Nurse Rebecca later that evening and she said that Dr. Krance had looked at the marrow and that the morphology looked normal and that the spinal fluid was clear… Praise the Lord! The results were also in from the engraftment studies on Friday and they reconfirmed the earlier results of 50-60 percent donor. Relatively unchanged although slightly improved. So some good and not so good news. The plan is to continue with the Submyeloablative Stem Cell Transplant. Now came the harder news to take. It will be at least a week until things start which sets us back here in Houston. Our three to four week early estimate has certainly grown to at least six weeks. The most important news is good though and we’ll take it.

We go in tomorrow after our day of rest today for the blood serology tests on Abby and Suzanne. Preliminarily, it looks like Abby will not be admitted until next Friday and will start her chemo then. Her In-patient stay will be at least two to three weeks as they watch her closely for GVH symptoms and recovery. Then she will be outpatient for at least another two weeks after that. So we still have lots to do here. Today, Abby was enrolled in the Houston school districts first grade at the Ronald Mcdonald House (Texas started school last week!). I can’t tell you how thrilled she was. She is seeing her same teacher as before (Ms. Starr) and will probably (hopefully) see Ms. Landry again when she is in-patient at TCH. She jumped right in and had a ball. Some bright sides! That’s the latest from Houston.

God bless you all, Bert

Saturday, August 17, 2002 at 06:43 AM (CDT)

PRAYERS REQUESTED.

Hi Friends,

We found out Wednesday that Abby's marrow had slipped to around 50 percent donor. They want us back in Houston. We all will leave on Monday for a Tuesday appointment.

The plan now is to admit Abby inpatient into Texas Children's Hospital Bone Marrow Transplant Unit and administer two types of chemotheraphy, Melphan and Fludarabine, for six days. This is to suppress the marrow but not to completly obliterate it. During that time, Suzanne will get Neupogen shots again to boost her white count. This is essentially the same procedure as last time for them both with the exception of the chemo and types of cells from Suzanne. They will aphereis the cells from Suzanne and transfuse them into Abby. It's called a Subablative Stem Cell Transplant and it's goal is to reestablish the donor marrow in Abby. This may in fact also stimulate an increased Graft vs. Host (GVH) effect which is why Abby may be placed back on to immuno-suppressants. A good and bad thing because some GVH helps fight off the other marrow and possibly any remaining leukemic cells. Bad in that there is potential for other body attacks on major organs. This was confusing since her blood counts had looked so good with platelets recovering to and maintaining well over 100,000. Dr. Krance at TCH said that may be a real good sign that Abby's leukenia has not returned however they will check to make sure with a Bone Marrow Biopsy in Texas when we arrive. They also repeated the STR's (DNA) tests yesterday from here and shipped them out. Because it is a differential test, it has an error rate of 5-8 percent and so we are repeating it and hopefully will have confirming results before we start anything.

In the mean time, Abby is fighting a sinus infection which will have to be resolved before we start. She is on Chewable Amoxicillan for now. The concern is she will get neutropenic (low white cell count) during the chemo and will be susceptible to infection, viral and bacterial. Breaking the news to her was not easy. We all just layed down together on the bed and told her, highlighting the positives. She was worried and crying, as we all were, but was soon laughing at the thoughts of going to visit Radio Lollipop at the hospital, visiting the Houston Cows, and living at the Ronald McDonald house. We plan on staying there this visit instead of Carmen's to ease our travels to the hospital. In a way and oddly enough, she seemed to be relieved to go because we think she has just felt badly physically. She has never really gotten over her cold when she returned from Houston the last time. Since last week it had gotten worse to the point where they did give her some IV antibiotics at the hospital and just closely monitored her with daily visits to Portsmouth by Suzanne and Abby to check on her.

All this and we must plan again for our trip which is expected to last 3-4 weeks to perhaps 6 weeks. EDMARC... the children's hospice who assists our family... thank you so much for everything. Beverly, EDMARC's social worker spent all day with us the day we found out comforting and talking to us. She has been a dynamo, helping arrange flights, support and services. She has coordinated with social workers in Houston as well coordinated our stay in Houston. Because Abby may return to immuno-suppresants, she will not be able to attend regular first grade, which she was so looking forward to. She was worried she would fall behind and we told her we would set it up for her to get homebound in Houston which has been scheduled. We might, and plan on doing, the same back here again when she returns until she gets cleared by the docs to attend regularly. That softened the blow to Abby somewhat but she was very dissappointed. So much support to be thankful for in all this but especially thanks to Beverly! Our neighbors have also given us tremedous strength and caring. They will all band together and care for our "herd" of animals while we are gone. I will return in two weeks after I have Abby out of the woods and them both settled to outpatient care. Job constraints limit my stay. We all hope for a quick turnaround. Love to all and again... thank you.

God bless, Daddy Bert

Saturday, August 10, 2002 at 06:03 AM (CDT)

DAY +232 NEW PICTURES ADDED!

Hi Everyone,

It's been a very busy week and a half since my last update. We traveled over 1,200 miles by truck going to Georgia for my brother's wedding. Everything went very well. Please see the new pictures! But before all that, let me give you the latest medical update on Abby. We are all battling colds and Abby has been seen twice this week at the hospital for routine checks since our return from Georgia. Her blood counts have been very good with her platelets rising to 124,000... and steady(norm is 150,000-450,000). Her white and red counts have dropped since my last update. Her white went from 4.1 on Tuesday to 3.2 on Friday (norm is 5.0-14.5). Her hemoglobin went from 8.8 to 8.5 respectively (norm is 12.5-15.5). The good thing about her red count is that it seems to have held for the most part this week. An indicator of functional recovery of red count is the reticulite count which Abby normally holds between 0.4 to 0.9 (norm is 0.5 to 1.5). On Monday it was at 2.2 and Friday it went to 3.2. This huge increase indicates that her marrow is really gearing up for red cell production and that is great news for us considering she has not been making red cells since transplant. We pray this trend is a positive sign of her new marrow recovery. Also her latest engraftment studies went off on Tuesday so we patiently await those results.

Last week we all attended my brother's wedding in Tyrone, Georgia. It was beautiful! Bride Brandy and Groom Alfredo looked wonderful. Abby had a great time playing with her cousins Carisa, Melanie and her new cousin, Kesley and of course did a wonderful job as flower girl. We went boating and did a lot of normal things. With my whole family in town (which is an extremely rare occurrence) there was lots of home cooking and my dad was a busy chef. We met some wonderful neighbors and friends and Abby got to feed the huge Goldfish and Coy at Guy and Melanie's place down the road. Uncle Alfredo gave us a Boat... yep a '18.5 foot Wellcraft w/ a 140 HP Johnson to take back with us. We look forward to taking it out around this area. So certainly a lot of blessings this past week and a half. Thank you Lord.

That's the latest. God bless you all. Love, Bert

Tuesday, July 30, 2002 at 06:49 AM (CDT)

DAY +221

Hard to believe that Abby is now 221 days post transplant. It is not without fear, trepidation and worry. She is still recovering. Her disposition seems both fearful and tentative but she is now making progress again and we are thankful.

Abby’s bone marrow engraftment studies came back and she has shown some improvement thank God. Her ratio is now 70 percent donor to 30 percent hers. Her granulocytes have dropped a couple of percentage points but all in all, a very good result. Her blood counts from yesterday showed her body chemistries were very good with no abnormalities. Liver and kidney functions continue to look good. Her red count (hemoglobin) dropped again to 9.5 but her white count is at 5,500, ANC is at 4,300 and her platelets are holding steady at 109,000. Her weight has also held steady at 43 pounds, three weeks now. We will continue to get her blood monitored weekly and her engraftment monitored bi-weekly. Next week she will also be due her pneumonia preventative therapy (pentamidine). We most certainly continue the battle. It almost seems that monitoring her condition is never-ending. The worry and weight of concern are as constant as the daily sunrise. Distractions and moving forward is difficult when her counts are still not normal and we still maintain her central lines. Hopefully, we pray that her full recovery comes soon and she can return to a normal pace and routine.

This week Abby continues to be blessed with the company of her best friend Madison and her sister Macy. First, Abby had a wonderful party last Thursday. The Harry Potter theme went very well and all the little gals played lots of games centered on the theme. Thanks again to EDMARC for their help and generosity… thanks Beverly and Debbie! Madison also had her 6th birthday this week and they all celebrated. They play well together and have lots of fun… wonderful to see. Madison’s sleep over was wonderful but Abby is still not confident enough to stay over the whole night. She tried but returned home at 11:30 that night. But it was still a very good and fun night by all accounts (Dads watch sports instead of being involved in sleepovers!). This Thursday, we are road tripping out to Atlanta to attend my brother’s wedding as I had mentioned. With positive results on her tests we are a go to travel. Abby went to pick out her flower girl dress yesterday and is ready to do her job at the wedding. We are very happy to get to see the family, although the trip will be short. Abby will get to play with all her cousins, including Carisa. She is very excited. Please continue to keep Abby in your prayers. Love and God bless, Bert

Monday, July 22, 2002 at 06:58 AM (CDT)

Hi Everyone,

Abby has been improving over the past week. Her appetite has improved and she has been eating more each day. She went in last week to the clinic, as I had mentioned, and her red count had dropped slighty again to 7.5. Her platelets and white counts were holding pretty stable. Her platelets had shown some drop but still in the normal range. She did get transfused with red cells and that did a lot in improving her energy and disposition.

The rest of the week has been a lot of home stuff with Abby very much enjoying playing with her best friend Madison and her little sister Macy. They have a sleep over planned for Madison's birthday soon. EDMARC Hospice for Children social worker, Ms. Beverly, has been very involved with us, helping Suzanne and I with so much stuff, least of which is our emotional well being. First of all, she had a group stop by from Volunteer Hampton Roads to help out on any house chores and some wonderful folks from KPMG came by on Saturday to paint our porch. We added the picture of Abby and I standing on the porch with the group at our house stoop in the photo section.... THANKS to all that helped! Beverly also invited Abby to a skating party and is organizing Abby's birthday party with Suzanne for this Thursday at a place called "Once Upon a Time". She finally gets her party after having to wait. She still has the Harry Potter theme for the party and is excited for it.

Today, Abby will get her blood drawn for engraftment studies, which they plan on doing every two weeks, and her regular blood draw and check-up. We hope and pray things continue on the up swing. If everything goes well, we are all planning to go to Atlanta the first week in August to be in Uncle Alfredo's wedding. Abby is the flower girl and I will be the best man. She's excited to be part of the wedding and can't wait to see her cousins. So that's all the news for this week. We're still working on the picture collage to post.

Love to all and God bless, Bert

Monday, July 15, 2002 NEW PHOTO

Today, Abby goes in for a checkup at Portsmouth this morning and if needed, will get transfused with red cells. At least she is back home now and as they say... "there's no place like home!" We'll work on some new picture updates soon for you all. I know that is what most of you all anticipate and Suzanne has a lot to choose from after their trip. Thanks for your continued thoughts and prayers and your support on our latest venture. A big thanks for my sis Carmen and her husband Alfred for their care and patience in hosting Abby and Suzanne in Houston. God bless you all. Love, Bert

Wednesday, July 10, 2002 at 06:33 AM (CDT)

Hi everyone,
Abby's latest blood test from Monday came back very well. Her platelets were now up over 100,000 and her white count was at 3,800. Her red blood (Hemaglobin) count is hovering in the 9.0 region and we pray that we'll begin to see some recovery in that area soon. Abby tells me she feels great, although she seems to have picked up a cold with a runny nose and a slight temp. We hope it will quickly pass because they have been released from hospital care to return to Virginia!!! I received a call last night from one of the Angels from Angel Flights and Suzanne and Abby are looking to fly home on Saturday. They again will four leg it back up to here and Abby is excited to travel in the small planes again. We pray for a safe journey back.

Still no results back yet on Abby's engraftment study. I will post the results when I get them. They are planning to repeat the studies every two weeks for a while now. So close monitoring is definitely going to be the case for a bit. Abby loved her night at the Lion King show. She met her friend Jessica (another bone marrow patient from TCH) there and they had a great visit. They were chauffeured to the show by her Auntie Carmen and Uncle Alfred. They have both been taking great care of Suzanne and Abby and I want to thank them.

God bless you all and thanks. Daddy Bert

Sunday, July 07, 2002 at 07:24 AM (CDT)

Abby's tests from Friday looked wonderfully promising and hopefully she'll return home this Tuesday or Wednesday!!! Abby's blood tests came back with both platelets and white counts rising significantly. Her white count was up close to 4,000 and her platelets had risen to the mid-60,000's. Abby also had her blood taken for engraftment studies (STR's) which will take a couple of more days for the results, but even with the results she can probably still return because it is still a little early to truly assess her engraftment, but they will try. Abby returns on Monday to have another blood test to ensure things look well enough to travel. Her red blood count still continues to drop to 9.0, as it is the cells that are sometimes difficult to develop. She'll continue to be monitored up here. Graft vs Host issues will also be closely monitored because after her latest treatment with Suzanne's cells, it potential of emerging becomes an increased risk. Cautiously optimistic is a good phrase to describe Suzanne and I at this moment. Ever hopeful and thankful is another I can think of. God bless, Bert

Tuesday, July 02, 2002 at 07:50 AM (CDT)

Hi Everyone,

Abby's visit in to the Hospital yesterday went well. Her platelets are on the rise (in the 50,000 range) and her white count remains very steady. Her red cells, or hemoglobin, continue to drop and Suzanne tells me that she tires very easily, typical for her it seems. She certainly stays active all day though! They all have been trying to keep her busy with arts and crafts, reading and some shows during the non-hospital times. The doctors have assured us that it sometimes takes a long time to see recovery in post BMT patients of the red cells. They do not seem overly concerned over this and they are happy with her overall progress. To this point, she has shown little to no Graft versus Host (GVH) symptoms. She did have a little diarrhea, post cell transplant, which is sometimes an indication of GVH symptoms of the gut. It was short lived, however, and she is doing really well physically. Like Suzanne has said, she still is, understandably, emotionally fragile. The plan now is to check her again on Friday with blood samples going to Dallas for the STR's (Standard Tandem Repeat). They will establish if the boost is working. After they get the results, perhaps as early as next Tuesday, they will be released to come back home.

The week previous, they were told that they would have to be monitored for a while longer as they went over everything with Suzanne and Abby became inconsolable. She really wants to get back home. To help ease things, the hospital social worker and nurses came in with two tickets to the Lion King stage show for this coming Saturday. When I talked to Abby that evening she told me; "Daddy, I have to stay for a couple of more weeks because I gotta go see Lion King!" She was very excited and I think it helped ease her fear and loneliness. Not much exposure to other kids her age down there unfortunately.

I received an article from the Nachez Mississippi Democrat, actually written by it's editor. It was written about Abby and Suzanne's trip down to Houston via Angel Flights. It highlighted the wonderful folks that volunteer their time and planes. Here's the link. Just cut and paste it to your browser:
http://www.natchezdemocrat.com/NF/omf/nddaily/news_story.html?[rkey=0014562

For now we hope and pray that things continue to get better and her new cells starts giving her marrow the boost it needs. Thanks to all of you for your continued support. Love to all and God bless, Bert

Thursday, June 27, 2002 at 10:21 PM (CDT)

Greetings from Houston:
Abby seems to be doing well physically. She has an appointment tomorrow at noon where they will do a blood test and a physical. She is very happy to see her Auntie Carmen, Uncle Alfred, and Birdie. But she is really very sad because she misses her friends, especially Madison. And she misses deeply misses her Daddy. She cries herself to sleep almost every night. She said to me,"I'm having a tough time mommy. I've been through so much. Is there such a thing as going through too much?"
My heart broke for her. We've spent 2 Thanksgivings and 2 Christmases in the hospital and before we left for Texas we had to postpone her big birthday party with her friends. At home, the pinata, decorations, and party favors await. I suppose it gives her something to look forward to when we get back. I will let you know what's going on as I know.
God Bless You.
Mommy Suzanne

Thursday, June 27, 2002

Greetings from Houston:
Abby seems to be doing well physically. She has an appointment tomorrow at noon where they will do a blood test and a physical. She is very happy to see her Auntie Carmen, Uncle Alfred, and Birdie. But she is really very sad because she misses her friends, especially Madison. And she misses deeply misses her Daddy. She cries herself to sleep almost every night. She said to me,"I'm having a tough time mommy. I've been through so much. Is there such a thing as going through too much?"
My heart broke for her. We've spent 2 Thanksgivings and 2 Christmases in the hospital and before we left for Texas we had to postpone her big birthday party with her friends. At home, the pinata, decorations, and party favors await. I suppose it gives her something to look forward to when we get back. I will let you know what's going on as I know.
God Bless You.
Mommy Suzanne

Tuesday, June 25, 2002 at 08:29 AM (CDT)

Hi Everyone,

Suzanne went in yesterday to get her blood drawn and analyzed. The results were vary good with her white count being more that sufficient to donate. Great news after a weekend of shots for her. They immediately sent her to the Methodist Hospital to draw her white cells and then they did another count to make sure they had enough of the lymphocytes to give to Abigail. The white cell donation effort lasted most of the day for Suzanne although the actual draw went for four hours. A long time hooked up with both arms to get all the cells.... GOOD JOB Sweetheart!!!! Suzanne received late word last night that they had enough.

The plan today is Abigail will go in at 10:30 and receive Suzanne's donated white cells (cd34 enriched lymphocytes). She will be monitored for an additional four hours to make sure she has no ill side effects and then released. So everything is still, and God willing continuing to be, outpatient. They will monitor Abigail down in Houston for at least two more weeks before they will release her back, a bit longer than we had hoped. After discussions between Suzanne and the doctors, it was decided it was best to closely monitor the renewed graft and then await the results of the STR's (DNA testing), which will take another 3-5 days after it is drawn. If it looks like the donor marrow is recovering, they can return and be monitored from here like before. So my girls will be down for a little longer but will be home soon. Please keep us in your prayers, as I know you are, that Abigail's marrow does it's thing and hopefully be the last treatment she will ever need again. God bless you all, Bert

Saturday, June 22, 2002 at 08:01 AM (CDT)

Abby's appointment on Thursday went extremely well. Suzanne tells me that everyone was extremely pleased with her appearance and she did very well. I could tell also that Suzanne felt relieved, by the sound of her voice, after talking with Dr. Krance on what we are to expect and what are the steps. Dr Krance also reconfirmed that Abby had not relapsed after looking at her marrow and that it looked good to him.

I will try to explain this the best I can and to the degree of my understanding, which is very limited. Suzanne has started getting two injections of Neupogen (GCSF) and will get these injections daily throughout the weekend (4 days). Suzanne said it felt like fire ants being placed under her skin. What GCSF does is boost her white count tremendously. She might experience bone aches and pains this weekend as the her marrow starts really producing white cells. She will get tested again on Monday and if the count is high enough, she will have her lymphocytes (white cells) "harvested" through apheresis (similar to how they get platelets from donors except with a bigger needle) Suzanne tells me. She will have a needle in both arms and as one side will have her blood withdrawn, it will be separated and then the red blood returned to her other side.

This is where I'm really sketchy, so bear with me. They are after cells from Suzanne that can be best described as "baby" lymphocytes with a CD34 antigen expression. These will go into Abby and help stimulate marrow growth without typical Graft Versus Host (hopefully) side effects which would normally be associated with using mature lymphocytes. This is cutting edge cellular gene theraphy stuff that has not been yet established through protocol for Bone Marrow failure, post transplant. However, Dr. Krance is a leader in the field and is optimistic that this is the wave of the future in treatment. We trust him explicitly and although our understanding is extremely (understatemnt) limited, we are hopeful that it will work for our little girl. She will probably not have to go on immuno-suppressants, which is a blessing. She will be monitored after she receives her cells and then be allowed to come back to Dr. Porea's care here and they said that she could possibly be back as early as the end of next week. We pray that is the case. There is the potential they might have to return again and have Abby infused with "mature" lymphocytes if problems continue or if something negatively changes in the status of her marrow. Abby's engraftment will be monitored for a long time through Amplified DNA (Standard Tandem Repeat) testing up here and sent off to Texas. If it comes to pass that "mature" lymphocytes will be required, Graft versus Host issues can become more severe and inflammed. As Suzanne tells me, "It's like adding a white cell army into the host and they start attacking everything that is not genetically similar.... whew!

There is lots of stuff on the web on "CD34 enriched therapy" but wow! That's why they make the big bucks! It will make your head spin. I pray that our lord God is with Abby and Suzanne. God bless, Bert

Thursday, June 20, 2002 at 08:06 AM (CDT)

Good morning to everyone.

Abby and Suzanne have arrived safely in Houston courtesy of Angel Flights last night at 8:30. They four legged it out there on the wings of some very generous people and I want to personally thank them for their time, effort and dedication. Thank you very much to the whole Angel Flights organization. You all are true Angels.

Suzanne carried Abby's Bone Marrow slides with her and the final results from the Pathologist at Portsmouth were very good. No Leukemia and typical maturation of her blood cells. That, hopefully, will translate into a relatively short stay for Abby and Mom. They have an appointment this morning at 10:30 and we will get a better idea of the timeline. I received word yesterday that they (Dr. Krance and staff at TCH) do not think that it will be longer than two weeks. We hope and pray that the infusion of Mom's cells gives Abby all the boost she ever need again.

Thanks for all your prayers and notes of support. God bless you all. -Daddy Bert

Thursday, June 13, 2002 at 07:24 AM (CDT)

PRAYERS REQUESTED!!!

Hi Everyone,
Today Abby will go in to have a Bone Marrow Biopsy. Results from her engraftment studies were less than expected. Her Myeloid group was down to 92% (origin of her cancer) and her Lymphoid group is down to 84% donor marrow.

What this means is that there could be a chance of Abby's AML reemerging in 8% of her marrow so we want to treat her degradation of marrow aggressively. They will check today if anything is noted in her Marrow.

Abby and Suzanne will depart for Houston on Wednesday. The Docs down there will boost Suzanne's white count with GCSF and then apheresis her white cells out with a CD34 enriched transfusion back into Abby. The leukocytes Abby will receive from Suzanne hopefully will help stimulate her donor marrow into more aggressive growth and also help suppress Abby's original marrow. They will do this method also if they find Blasts or Leukemic cells in her marrow but would also add some low dose chemo.

So we hope and pray for the best. I will maintain things back here unless things change. If so I will then hop a flight to Texas as well. Hopefully we'll get them both back in 2-4 weeks. I'll keep you posted.

Love, Daddy Bert

-------------------
Friday, June 14, 2002 UPDATE

HAPPY 7th BIRTHDAY TO OUR YOUNG LADY, ABIGAIL!!!

We received news yesterday from Dr. Porea that her marrow "Preliminarily" on his look, looked good!! Praise the Lord and the gift of prayers!

She was a real trooper yesterday. After getting anesthetized, she had her Bone Marrow Biopsy. When she woke up she immediately started eating and drinking. We went up to the HEM/ONC Clinic within a half hour and Abby received her weekly dose of the red blood booster and then was transfused with red blood, while she played FUSBALL on the fusball table!!!! Her hemoglobin was at 8.2 so she was transfused for the trip. It was an all day thing at the hospital and we broke the news to her that she was going to Houston. She cried for an hour. She didn't want to leave Virginia and the thought of having to wear the filter mask again was too much. But she finally settled and we called Auntie Carmen when we got home. She made Abby excited to come down for the visit.

Today, Abby woke up to many gifts and cards from you wonderful folks out there. Besides her very loving family and extended family, we want to thank Angel Sheryl for her gifts of love. Tonight, we plan on visiting all the dedicated and marvelous people at the American Cancer Society "Relay for Life" walk/run ceremony. Not only will there be people we know from the Portsmouth Naval Medical Center HEM/ONC Clinic, but "The Gee Bees", a teachers group from Abby's school, Great Bridge Primary, will also be there and this is so special. They have chosen to represent her at the Relay and present her with the "Celebration of Life" award. How great is that!! As a Saturday morning postscript, we were never able to get out to meet with the folks at the Relay for Life. Abby was not up to it and we had to respect her wishes on her birthday. We had an enjoyable day together as a family. Her smiles were amazing and uplifting. I want to apologize for not seeing all the great volunteers out at the Relay. Know that you were all in our thoughts. We send you our love and thanks.

We pray that her trip to Houston will be short lived and she can return quickly. Suzanne and Abby will fly down on Wednesday courtesy of the wonderful folks at Mercy Medical Airlift (Angel Flights) and her first appointment will be Thursday at 10:30. Please keep us in your prayers and God bless you all for your loving support. Love, Bert

Sunday, June 09, 2002

Hello Everyone:
Abby went to the Naval clinic to see Dr. Porea on 6/6. Thursday is our normal clinic day. She had her "yellow cap blood test" done. This is a blood test that is sent to Texas Children's Hospital for engraftment studies. It checks to see if Abby's blood is still 100% from the donor marrow. Please keep her in your prayers that the marrow is 100% engrafted and that it is healthy and 100% functional. We will not get the results from this test for about 2 weeks and we will surely post it on this site.
She also had IV Pantamameme (sp?) to prevent a certain type of pneumonia immune-compromised kids are susceptible to. She got very nauseous during the infusion and threw up, so they gave her IV Zofran. Then she got the IV medicine that helps to stimulate red cell production. On the way home in the car, she cried the whole way. For some reason she has had a weepy week. I don't think she felt well. Her hemoglobin was at 8.6 on Weds (it should be 12.5-15). Unless her red blood cell production increases, she will probably get a red blood cell transfusion next Thursday. Please pray that Abby's red cell count goes to the normal range and stays there.

Abby will be 7 years old on Friday, June 14th. I am in awe of her courage, spirit and resiliency. She told me that we cannot take her portrait until she is 7, that she won't draw an art entry to Making a Mark Exhibit (for Texas Children's Hosp.) until she is 7 and that once she is 7, she wants to be called Abigail instead of Abby! She is ready for a new start it seems to me. More power to her! Take Care Dear Friends.
Love,
Mommy Suzanne

Tuesday, June 04, 2002

NEW PHOTOS

Dear Friends:
Abby is doing well. She started on weekly IV doses (through her central line) of a medicine to stimulate the production of her red blood cells. As I understand it, it stimulates a hormone (triggered by the kidneys) that stimulates the red blood cell production. So far she has had one dose with no obvious side effects.
Aunt Karen came from Florida to visit during the Memorial Day weekend. Abby was so happy. She loves and misses her Auntie so much. Bert & I went out on a date while Karen watched Abby. We celebrated our 10th anniversary. We went to dinner and the Star Wars movie "Attack of the Clones". I chuckled as I remembered seeing the original Star Wars in 1974 in Mexico. CP3O was called Sergio and R2D2 was called Arturito!!
Abby also had her long awaited sleep over with her best friend Madison. I don't know how many of you have read "Where the Wild Things Are," but I am here to tell you they had a Wild Rumpus! Angel Sheryl had sent them a sleep over kit. It contained 2 pair of PJs (one for each girl), 2 pillow cases with their names embroidered on them, a big pink bowl with matching cups, 2 microwaveable popcorn bags, soda, candy, the movie Cinderella II and a bead kit for making friendship bracelets. They had a ball and so did I just being there.
Abby's Dad took her to a baseball game and had VIP seats in the shade!
We also went to an outdoor EDMARC Hospice for Children picnic. We saw the nurses, doctors, and clinic friends as well as our friends we see on and off during transfusions. Fun to see everyone out side of the hospital.
Abby is doing well considering all that she has been through. She is still fragile and still gets sick and fatigued at times. We are getting ready for her birthday party (Harry Potter). She will be 7 on June 14! She is a Flag Day baby.
Abby's primary school is walking in honor of her in the Relay for Life coming up. What a beautiful group of people they are.
Thank you everyone for your commitment to finding a cure for cancer. We appreciate your continued love and support. Abby loves all of the thoughtful things people do for her. Thank you so much.
Bye for now.
Love,
Mommy Suzanne

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Thursday, May 23, 2002

NEW PHOTO

Greetings:
Sorry I have been so slow to update. We appreciate everything everyone has done for Abby. We thank you.
Good news! Abby's new Marrow is beginning to make more platelets! This weeks blood test showed a significant increase. Her platelet count has been hanging around 50,000 since the transplant. Well, it is now at 60,000. Thank you God! We are still waiting for her red blood counts to increase.

Abby is now off TPN (IV nutrician)!! She is trying really hard to eat and was able to eat enough last week to keep her blood chemistries in the normal range. We're still trying to increase her intake but her tummy still needs to stretch a little more. Her weigh has stabilized to pre-transplant (50 lbs.) and she looks real good.

On a personal note, Abby received her BEAUTIFUL quilt from Love Quilts. You need to see the wonderful work they did in putting this together. I added the link on the bottom of the page for you all to see. These folks did a fantastic job on the quilt and Abby cherishes it so. There was a lot of love put into that quilt and we certainly appreciate it. A special Thank You to everyone who worked on it.

Bye for now.
Love,
Mommy Suzanne

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Saturday, May 11, 2002 - HAPPY MOTHER'S DAY

Greetings:
Abby went in to the clinic on Thursday (5/9) for a red blood transfusion and her monthly IV Pantamamine (to prevent a type of pneumonia). We were there most of the day.
When we got home (20 minutes before her teacher Mrs. Larkin came), she cried and cried because she is worried that her cancer will come back. I reassured her as best I could that everything will be all right. She said to me, "You don't know that. Only God does." She's right. I feel so sad that a little 6 year old child has to worry about cancer.
When Mrs. Larkin came she was still crying. Mrs. Larkin in her kind and gentle way comforted Abby too, and then they went out back to see the 2 sunflowers that Abby had planted for class. As luck would have it a bunny ate one, but Abby was okay with that. She did her school work and seemed okay.
Since I last wrote, I went and had a blood test to find out if any of my fatigue was anything physical. I did find out I was anemic (Hemoglobin was 11 instead of between 12.4-15.00). I think of my poor Abby whose Hemoglobin has at times dropped below 7! I attribute the anemia to being a bone marrow donor. So I'm taking vitamins.
This Mother's Day is for me such a blessing because I still have Abby with me on Earth. God has given us more time together. I cherish her and thank God for bringing her into Bert's and my life. I don't know what lies ahead, I only know now. And now has Abby.
God bless all the mothers out there. I hope that you enjoy your special day for it truly is an honor to be a Mother.
Love,
Mommy Suzanne

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Monday, May 06, 2002 - NEW MIDDLE PHOTO!

Hello:
I apologize for not updating this sooner. So far everything has been going okay with Abby. I, (Mommy Suzanne) feel like I have been physically, mentally and emotionally hit by a freight train. Everything is finally hitting me. The fatigue, the erratic sleep over the past months, the crisis stuff... Everything!
I feel so overwhelmed by life. I hope this passes because lately, aside from taking care of my Abby, I am not getting much done.
Love to you all.
Love,
Mommy Suzanne

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Saturday, April 27, 2002 - NEW PHOTOS

Greetings:
Last week on Sunday, Abby's Kindergarden teachers came to visit her at home. She was so excited, I thought she was going to burst. When the door bell rang she started screaming and jumping up and down. Then Abby and Mrs. Larkin and Mrs. Jones exchanged big warms hugs and kisses (see photo). Abby was still high from their visit well into the night!
We had submitted the paperwork for homebound school and Abby had prayed that God would send Mrs. Larkin for her teacher. And guess what? Mrs. Larkin is her homebound teacher!
Mrs. Larkin began Abby's lessons the very next day to her delight. They met for a total of 5 hours this week. Bert and I were happy to hear Abby is ready for 1st grade as far as reading. She will have other things challenges so we were pleased to hear she will be set otherwise.
Also Abby and Mrs. Larkin planted a sunflower seed in dirt and placed a lima bean in a zip lock bag with a wet paper towel for a Science experiment.
You would not have believed her excitement when the lima bean cracked and a sprout came out!
Then the sunflower sprouted. She was running around jumping for joy over that! How refreshing!
I will write more later, I must go my little girl is calling for her Mommy.
Take Care and God Bless.
Love,
Mommy Suzanne
PS Abby lost one of her front teeth (see photo)! What joy for our family to experience NORMAL childhood events!

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Sunday, April 21, 2002 - One New Photo!

Greetings:
Last week was intense! On Monday 4/15, Abby had to go to the clinic for red blood. Her hemoglobin was 7.3 (they transfuse at 8.0).
On Wednesday 4/17, Abby developed a rash that scared us because we were afraid it was chicken pox. Thank God it was not. The docs said it was a rash related to a virus.
On Thursday 4/18, Abby had to go in to have her 3+ hour IV infusion of human immunogloblins (IVIG). To her delight, her friend Abiageal was there too. They had a ball together.
On Friday 4/19, Abby got a deep splinter in her finger. I had to call the hospital to see if there was anything different I should do.
On Saturday 4/20, Abby had a splitting headache that made her throw up and lay flat on her back. We called the hospital and treated her for possible dehydration.
On Sunday 4/21, Abby woke up in the morning with a headache again but it stopped after we gave her Tylenol and has not returned!
She is doing okay now. Thank you for all of your prayers. Please continue with the prayers because Abby still has a long road to recovery ahead of her.
Bye for now.
Love,
Mommy Suzanne

P.S. When I visited Angel Delaney's Web Site today, I read the most beautiful poem from Angel Delaney to her Kindergarten Class. It is entitled "To All My Friends In Kindergarten". The link is below. Make sure you have a box of Kleenex nearby, it may make you cry (I did).

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Sunday, April 14, 2002 - NEW PHOTOS!

Greetings:
On Friday, April 12th, our neighbors had a Welcome Home party for Abby. Madison's Mom had it at her house. Abby was so excited she could hardly stand it. She had so much fun seeing the neighborhood kids again. There were balloons, a cake, gifts, and even a t-shirt of the neighborhood kids. (Thanks Samatha!) But best of all there was lots and lots of love. Abby laughed and forgot all about cancer and bone marrow transplants. This is only the beginning of her new life and it was off to a great start. The love and support of our neighbors has been awesome. Some people ask us how we survived the whole ordeal. We survived by the grace of God and by the love and support of our family and friends. And not to be forgotten the doctors, nurses, and medical professionals who were only a phone call away. We left Texas knowing Dr. Porea would be waiting in the wings to take care of our little girl. We knew EDMARC would be there. We knew Abby's teachers and classmates would be waiting for a visit from her when she is ready. We knew Debbie and Jim would be there with their wisdom and healing presence. All these wonderful people! Abby's biggest fear was that she would be forgotten. And all of you have remembered her and kept her in your hearts and she knows it. She said to me one day in Texas, "Mommy I know that a lot of people are praying for me. I just feel it."
Thank you and God Bless you and keep you.
Love,
Mommy Suzanne
P.S. I posted new photos too.

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Wednesday, April 10, 2002 at 02:21 PM (CDT)

Hi everyone,
Abby's cultures all came back negative and her fever dissapated within a day after her antibiotics started. Because she was doing so well in that department, they released her for home yesterday. So that was great news. Her counts looked good as well. She was so happy to get back home.

Her appetite has not been good and so she is back on 12 hour TPN and lipids again until she starts feeling better, or at least enough to eat. Things recover slow for her so we hope it will be soon. She was able to play yesterday for a little while with her friends after she got home, but we are still being cautious with her and allowing her lots of time to rest. But life is good again. Abby will get her blood drawn twice weekly from home nursing and she goes in tomorrow for a pentamidine infusion. Next week I believe she will get her final gamma globulin infusion. We are also trying to get her home bound schooling started again. She loves it and it's hard to keep her off the school bus with her friends.

Our prayers go out to Angel Sheryl and hope for a speedy recovery and thank you all for the prayers you have shared with us.

God bless, Bert

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Sunday, April 07, 2002 at 07:02 AM (CDT)

DAY +107

For every couple of steps forward, there inevitably seems to be a step backward. Abby started carrying a fever of around 100 degrees not long after we returned. Although she wanted to go outside and play and invite everyone over, we held her in and let her rest and recover after our long trip back. Yesterday, her fever kept creeping up and I had to call the oncologist over here after it topped 102 degrees and reluctantly she had to be admitted to the hospital again.

I think overall she is doing well, she just seems to be fighting a bug. She has no obvious areas of infection. Everything looks well on her. I just can't take chances with her immature immune system and while she is still on her immuno-suppresants (which by the way she get's off of on Monday). She had not complained of feeling ill or feeling hot. The only reason we started taking her temp was because Mom said she felt hot and I took her temp. I checked every two hours along with her B/P (which remained stable at 101/57) and pulse (which rose with the fevers). We were hoping it would go back down but it didn't this time. Repacking to go was not that difficult since we barely had unpacked from Texas. What a pain!

The plan is to start her on antibiotics and fluids. We came in and they cultured both of her central lines and took a chest Xray. She was put in an isolation room and Abby just rolled with the punches. She was crying when she found out we were returning to the hospital but resigned herself that it was best. I got them all settled and hopefully it will be a short stay (three days max.) I'll keep you posted now that I have my trusty 'puter here at home! Good to be back, regardless!!! Praise God!

Love to all, Daddy Bert

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Saturday, April 06, 2002

Dear Friends and Family:
We are home now in VA. We had a safe trip. We were met at the airport by Grandma & Grandpa Barker and our dear neightbors Lori and Madison and her sister, & Samatha and Caroline. The little girls were wearing t-shirts that said "I love You Abby". They had balloons and gifts. What a beautiful sight to be greeted by your loved ones!
As we approached our neighborhood, the 2 gates leading into our neighborhood were decorated with Welcome home posters. Our house was beautifully decorated with Welcome home banners and posters. Our neighbor's house had a Welcome home banner too. Then Sarah & her Mom stopped by also to say hello.
Abby was so happy to see Madison and Caroline and all the other neighborhood kids. She has been dreaming of this day for 4 mos. We appreciate everything everyone has done for our family.
We are happy to be home. Oh how we missed you all!
Love,
Mommy Suzanne

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Thursday, April 04, 2002

Greetings from Houston:

WE ARE GOING HOME TO VA TOMORROW!! Praise God! Oh, Happy Day!
We arrive home late afternoon. We are all so excited. We'll fill you in on everything when we get home.
Love,
Mommy Suzanne

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Tuesday, April 02, 2002

Greeting:
Our appointment at the Clinic on Monday was a good visit. Abby only needs to take her FK medication once a day (that suppresses her immune system so her body doesn't destroy the transplanted marrow). Her platelets are increasing, white count also. Red count still dropping slowly. It is at 7.0 now. We are waiting for the new marrow to start producing red blood cells. Please pray for Abby's marrow recovery.
Our next Clinic Appt. is on Wednesday. We are waiting for the results of the study of the engraphment to come back. It is being done in Dallas. Once we know the results, and all is well with them, we hope to return to VA and transfer Abby's care to Dr. Porea at Portsmouth Naval Hospital. Please pray that Abby can come home ASAP.
Thank you everyone. We would not have gotten through this without your prayers and love. Abby says she knows she's not alone because God, the angels and all of her family and friends are holding her in their hearts.
We will let you know anything new as soon as we know.
Love,
Mommy Suzanne

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Friday, March 29, 2002 at 02:51 PM (CST)

DAY +99

WONDERFUL NEWS TO SHARE

Abby went into the PACU the day before yesterday (March 27th) to have her day 100 Bone Marrow Aspiration check. We received a call that afternoon that Dr. Krance gave a preliminary look at the marrow and found it to be leukemia free!!!
Abby's marrow will now be scrutinized by the pathologist and sent off again for engraftment studies, but the early news is awesome and very promising!!! Dr. Krance has been doing this a long time and just to get the early look and result from him was cause to celebrate. We will discuss our departure from here with him on Monday with the goal of perhaps coming back together to Virginia by the end of the week! What a long journey, but the light shines brighter!
Now for the other stuff. We moved back into the Ronald McDonald house on Bone Marrow day for the convenience and access to the Medical District as well as Abby's continued schooling and child centered activities that we receive. Grandma and Grandpa Ortiz came into town that evening. What a busy day!!! Abby did absolutely fantastic all day. She continues to gain strength and appetite. She is back on 12 hour TPN after her Saturday bout with a bug but has been doing great since. She still gets nauseous on occasion but her nausea medicine has been tapered off a bit. She now only gets her heart med, Digoxin, her nausea med Zofran, a Nystatin mouth rinse for thrush and she is still on her immuno suppressant, FK506, although we will now probably start weening her off of it starting Monday.
Abby counts continue to fall except for her platelets, which are hanging in there at 36,000. Because of this, we were very anxious and nervous over the marrow tests. The doctors are not concerned and tell us that the marrow always takes a while to fully recover and every person is different. Her Hemaglobin was at 7.3 but they did not want to transfuse her yet (normally done at 8.0) and to check her again on Monday. Her ANC also climbed slightly from 1,060 to 1,420. Still above 1,000 and it has never dropped below 1,000 since her engraftment in January. The 1,060 count was the lowest since then.
Abby also finally met Angel Sheryl and her husband Mike the other day for a wonderful visit and one that she loved very much. Thanks Sheryl and Mike for everything! We love you.
We're adding new pictures to this update. Take care and God bless. Daddy Bert
PS The picture of Abby holding the carrot with the little bunny tucked inside, was an Easter present from none other than Fred the Maltese!

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Saturday, March 23, 2002

DAY 91+
Greetings:
Since Daddy Bert last wrote, we moved out of the RM house. It is amazing how many things one can accumulate. A good part of the stuff consisted of the beautiful cards and gifts Abby's friends, family and Earth angels have sent her. Abby has even received gifts from DOG friends. Yes, dog friends. Let's see, there is Fred the Maltese (Nancy Ambrose's pooch), Buddy Nieto (a drop-dead handsome King Charles Spaniel), and her Beagle friend in CT, Charlie Brown (the Sava family's doggie). And there are the cards from Lulu and Butchie (our own family Boxers) who are able to keep in touch with Abby with the help of Grandma and Grandpa Barker. Also Dr. Gwyn's pets leave sweet messages in the Caring Bridge guestbook! Abby does love her dog friends.
We are now residing at Auntie Carmen and Uncle Alfred's house until we can get back into the RM house next week. Abby is still having stomach problems but has started to eat again. We keep a food journal that we bring to clinic where they determine when she can go off the TPN. She is scheduled for a BMA on the 27th to check the health of her transplanted marrow. That will be one of the determining factors of when she can go home to VA.
This past week, Bert's sister and family from El Paso came to visit. Aunt Iris, Uncle Jesse, cousins Ryan and Carisa brought sunshine and fun with them. Ryan and Carisa were kind and compassionate to Abby for they knew that Abby is still recovering. They had a lot of fun playing with Legos, the Playmobile hospital Abby got for Christmas, doing crafts, watching videos, and just hanging together.
Bert & I went out on a double date with Iris and Jesse while Auntie Carmen watched over the kids. Bert and I enjoyed our date although it felt strange not having Abby with us. But believe me, she was there in our thoughts and hearts. Today her cousins had to leave because they have school on Monday. Abby already misses them.
Please keep Abby in your prayers. Have a blessed day.
Love,
Mommy Suzanne

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Monday, March 18, 2002 at 11:13 AM (CST)

DAY +86

Hi Everyone,

We have had four outpatient clinic visits since being released and depending on what needs to be done, each visit usually lasts about two to three hours. Waiting for the blood counts always takes awhile and after Dr. Krance and Nurse Practitioner Monroe examine her and go over everything with us, we leave and usually do something together. She does not have to wear her mask outdoors, in the car, or in our room. She does need to wear it around the Ronald McDonald House and when we get into areas where there are unknown people in a closed or confining environment. So we will do little things like drives to Auntie Carmen's or walks. We also find activities to do around the Ronald McDonald House. She really is gaining her strength every day, although we did suffer a setback this week.

Abby's blood counts are kinda low but are hanging in there. Her white count and ANC are improved to around 2,900 but her platelets and Hemaglobin remain the same, so they are holding... which is a good thing. She has not needed any transfusions so that is a blessing. Thursday's clinic visit was a little longer because Abby received a dose of Pentamidine, which helps protect her from pneumonia. Additionally, they examined Abby especially well because she seemed to have caught a bug on Tuesday. She was hovering with low-grade temps (99-100) for three days and had started vomiting again, with Wednesday being a really bad day. Any temp above 101 and we get readmitted for three days of antibiotics so we have been on pins and needles. She is still really battling nausea and stomach pains (gas) and this combined with her temp has caused her to have virtually no appetite. We walk the halls when she has pains and it usually leads to a trip to the potty. So at least things are moving along in there. Her chemistries came back low on Thursday so Abby was placed back on 12 hour TPN (IV Nutrition) Thursday night. I hook her up to her "liquid cheeseburger" every evening and it runs while she sleeps. She has been able to take and hold down her FK 506 (immuno-suppressant to help prevent Graft Vs. Host), which was probably the only thing that was keeping her from being readmitted to the unit. It still seems to be a step forward and a small step backward. Her nausea is now more in the morning and evening and she is recovering, but it is a slow go. Saturday's visit showed her chemistries are near normal and she is showing more improvement again. We took a drive to the Galveston beach to boost her spirits afterwards. She loved walking in the sand with her bare feet! Just got to get her restarted in eating again... made a little progress today with chicken soup.

We have clinic tomorrow and Abby will get a dose of IVIG (gamma globulin antibodies) this week which is a four hour infusion, full of fun stuff like chills and temps and stuff. Her, hopefully, final Bone Marrow Aspiration is scheduled for the 27th of March. With good results, we should be able to get out of here by April... please pray. I think we are all ready to head back.

I added new photos (yep, found the camera) to show some of the things that we are engaged in around the RM House. We will have to leave it on Wednesday for seven days because our 100 days is up. We plan on returning the 27th of March and will have a fresh 45 days till they kick us out for seven again. Hopefully, that will never happen because we will be home!!! So far I've shipped back over 12 boxes... more to come. God bless you all. Daddy Bert

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Sunday, March 10, 2002 at 08:51 PM (CST)

DAY +79

Abby was released from the hospital for outpatient treatment on Saturday!!!!

As they say, never promise anything and I should not have promised photos because we have been extremely busy the last three days to say the least. I packed my darn camera somewhere as well, but more on that later.

Abby has been holding down her meds and food very well. In fact so well, that I discussed with the nutritionist her being taken off TPN and Lipids entirely. She was able to voice that in the BMT team meeting while we were still in the hospital. The doctors agreed and so she has now been off of the IV chow for three days now. She loves the FK506 in applesauce and has been taking it very well for over four days now. Because of this, and the fact that most of her stuff has been weaned off, they asked us if we felt comfortable enough to transfer to outpatient care. Of course, we were ecstatic and jumped on it. So now she only has her FK 506, Digoxin, and as needed Ativan to be taken orally. I have to IV push her Zofran and Reglan. We just have to get her to eat, which comes and goes but overall is very good. We had a homecare nurse swing by last night and go over all of her stuff and procedures with us. Of course, we passed with flying colors having done med IV pushes and stuff before. Her Lasiks pill was stopped two days ago. She is doing so well... really. She is still getting nausea and stomach pains, but I really think things are getting better. Whenever she has pains, it has turned out to be gas. We get her up walking and as soon as she does, she feels better. When she goes to the bathroom, she had real loose stools and lots of gas. She only has around one or two movements a day so it is not any GVH stuff, just her bowls trying to get their act together.

Abby loves her freedom. She is getting noticeably stronger by the day and she tries so hard. She wanted to take some stairs up to her Auntie's place but only made six steps. The next time she did the whole flight... twice! She has walked around everywhere and I now do not even put her in a wheelchair anymore. Definite improvement and now she's ready to make the next step and that is to leave Texas and return home.

Abby's counts continued to drop again to an ANC of 1700, Hemoglobin of 9.6 and a platelet count of 22,000 when we left Saturday. Because of this, the docs wanted us to come in today for a blood test. I'm happy to say that all counts were up... in some cases significantly. Her ANC was up to 2,400 and her hemoglobin was up to 10.4. Her platelets were holding steady. Abby got up early this morning and she and Dad went out on an outing. We went to get me the Sunday paper and ended up surprising Mom and doing the hospital stuff today by ourselves early. We even went to wash the car and pick out some videos. Amazing what those little things did to boost her spirits! Her shakiness is really getting a lot better as well now that we are settling in as well. The less meds the better it seems but that is my humble and most simplistic view of things. I know that she still needs her meds post transplant for lots of reasons, but at least they have become very manageable! So hopefully we'll have promising updates on our preparation for our return home from now on and perhaps better, or should I say newer, pictures soon. When we packed out of that room, I cannot even begin to tell you how much stuff we have. I made four runs with the car. You would never guess you could get that much stuff in a tiny room. Every cubby hole was filled. We now have boxes stacked up in our room and we are in process of sorting and repacking so we can ship stuff home... my camera has to be there somewhere... I hope!! So that's it for now. Love to all and God bless. Daddy Bert

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Wednesday, March 06, 2002 at 03:53 PM (CST)

DAY +75

Time flies. I apologize for the delay in updating, but we have been busy with Abby and her recovery, which is a good thing. Hardly leaves time for other things it seems.

First of all, we are still inpatient. That makes roughly 84 days continuously in the hospital. Yep, worn out of hospitals and the daily shuffle. We are pressing the docs for a release date to go outpatient because Abby is really doing quite well overall but they are very cautiously weaning her meds and following her food intake and nausea. She has now really started to make progress on taking her oral meds and she eats better all the time. She is on TPN and lipids for 12 hours only and is making progress on not requiring it anymore, but it takes time. She has taken her Lasik pills every day for the past four days now. She has taken her Digoxin now for two days. The biggy pill, her FK506 (anti graft vs host med), needs to be taken orally before we can go outpatient and she is having trouble with that. It comes in a 1 mg capsule and it's just a bit big. She gags it up every time. Tonight we're trying the applesauce sprinkling and see how she does with that. If we can hold down the FK consistently, then we'll be well on our way out. So what does that mean about our return to Virginia? We still don't know but we are making plans now for at least my return the beginning of April. Hopefully, we can all come back together but we have to be prepared just in case. Dr. Krance will not let Abby transfer her care back to Virginia until everything is in order and without any lingering complications, like tummy stuff. So we have a month to work it and convince him of her wellness.

Abby is now off Fentanyl and her shakiness has waned, although it is still there. Her Ativan and Reglan are also continually being weaned but it is a slow process. I can hardly wait to get her off all these things so we can return to some normalcy but we are probably weeks away from that. The docs are thinking we might be able to go outpatient by next week if Abby continues doing well. Her nausea is still there but as long as she's active and engaged when she gets a bout of it, she's able to handle it better and it does seems considerably improved. Her fever has gone away and she was finally transfused with red blood on Saturday and platelets on Sunday. Her white counts and ANC have been holding steady at the 2,800 range and now all her counts seem to be holding pretty steady with the exception of her platelets, which are still slowly dropping again. This is the slow process of the marrow recovery.

Abby has had a couple of pelvic and stomach ultrasounds since my last update and they have come back well. We have also been out on pass FOUR times and she does better and better every time. We went to the shoe store (with Abby wearing her mask) on Sunday and were amazed to learn Abby's feet had grown two sizes larger! We knew she needed new shoes because her old ones were tight while she was out on pass. She loves coming to the Ronald McDonald house and has a post BMT 12-year-old playmate to play with over here.

That girl is keeping me steppin' and fetchin' (we are in Texas after all, y'all!) now that she feels much better. She stays out of her room and in the playroom when she is not out on pass. On Monday, we went up to the 16th floor library (with her mask on and dragging her IV pole) and prowled the halls. She checked out three books, had me read three more to her there and rented a video. She also found out that's where they broadcast Radio Lollipop from and went to visit the live broadcast last night. She ended up playing bingo and won two prizes being gone from her room for over two hours with her mask on. The nurses were starting to wonder were she had escaped to. She has done well in school once again although her fine motor control is still tough. We'll have to work on it. If she gets released from the hospital for clinic appointments, her schooling will continue over at the RM House. They have a classroom there.

So that's the latest. I promise to post new pics tomorrow so keep looking. Just gotta get the time. My best to all who continue to love and support us and follow our saga. God bless, Bert

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Thursday, February 28, 2002 at 06:40 PM (CST)

DAY +69

Abby has stayed at the hospital Monday, Tuesday and Wednesday. Monday's echocardiogram proved that things are unchanged with her heart, which is good news. Her heart rate has been up most of the week at around 140-150 bpm which is why they are anxious to have us get her to take her Digoxin pill. She has also carried a low grade fever. Her counts continued dropping again and her platelets at one point dropped to 22,000. They are back to around 30,000 today, although now her hemaglobin has dropped to 7.8. They normally transfuse below 8.0 but considering her counts are better than yesterday, the docs are not concerned over the fluctuations and view it as marrow recovery which makes the counts go up and down, They want to and see what tomorrow brings.

Abby's low counts certainly has not stopped her from getting up and out of her room. Most of Monday and Tuesday has been spent in the playroom. In fact, all day Tuesday she waited for friends to come and they did.... all her BMT friends came in at one time or another. Because she was active, we decided to try another six hour pass on Wednesday and we went to Auntie Carmen's house. Abby lasted most of the day but did get sick enough to want to come back an hour early. Just as we got her back and settled, she threw up. Today she rose early (6 a.m. believe it or not) and was raring to go by the time I arrived at 7:30. We played most of the day in the playroom but she finally pooped out for a nap around 11 for a couple of hours. Her fever has subsided and she is now off all of her antibiotics. Her pain meds are continuing to be weaned. She has the shakes which are subsiding slightly the more they wean her.

Abby finally took a pill today, her Digoxin. She almost gagged it out but managed to hold it down. Ahhh... one little success story to finally build on! The light shines brighter for getting outta here! God bless, Bert

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Monday, February 25, 2002 at 05:24 PM (CST)

DAY +66

In terms of how much Abby has suffered and gone through, this was a great and fantastic weekend. All in all, significant progress was made and she had a great time.

First off, we went to Auntie Carmen's house to meet her new bird on a six hour pass on Saturday. I think Abby just loved being out and really enjoyed the long car ride. Before we arrived, we decided to swing by Uncle Alfred's photography studio (www.altorresphotography.com , a free plug for him!) to say hi and we really surprised both him and Auntie Carmen as they were getting ready to go shoot a wedding. We left over to their place after the short visit and they joined us for the whole time we were there (the shoot wasn't until the evening). Abby fell in love with Carmens's new parakeet, which she helped name "Birdie". We had to place a chair (at a safe distance because she was still a little scared) in front of the cage and she must have watched it for over an hour. Abby even ate well all day. She had breakfast, lunch and dinner and had a couple of snacks. Held everything down too. Because she was doing so well, Dr. Krance asked if we could try the oral med for her heart again, Digoxen. Well, that was a bad move. She threw up every time we attempted it. Not a good time. He wanted us to try it, it comes in a small pill, because her heart rate is still a little high. On Sunday we asked for mercy again on the oral meds. We just wanted to concentrate on her eating. We were given absolution and so now we are back to getting her eating consistently and well.

Sunday, Abby and I had a surprise up our sleeve for mommy. After sending her on her way to the RM House, we got another six hour pass. I put Abby in her wheel chair, and because it was such a wonderful day with temps in the mid-seventies, we walked over to the RM House from the hospital. We saw birds in the park and paused at a big fountain in front of the MD Anderson Cancer Center. It turned out to be a good 15 to 20 minute jaunt... not bad at all. We walked in on, and really surprised mom, who was just getting ready for a nap. We enjoyed a full afternoon over there and Abby even climbed some stairs by herself in the play yard!

Today, Abby continues to eat and exercise more. She has scrambled eggs for breakfast. She danced in the playroom and played catch and soccer with me in the halls. She had salad with ranch dressing, hot dogs and ketchup, and chocolate chip cookies for lunch. Unfortunately, lunch did as it did yesterday and came back up after an hour. We have better luck holding down breakfast and dinner but at least she is wanting food. She helps me out now picking out menu items from the food list. Her pain is definitely gone now and her surgery incisions have healed very well. They are now just four small 1/4 inch slits that are healed up. They did a great job. Her nausea, however, is definitely real and there, and it has remained relatively persistent. The good news is because her interest in food is so good, they have cut her TPN and lipids to 12 hours. They are also continuing to wean the pain meds. Hopefully, all that will make her less nauseous.

Later this afternoon, Abby will have her echocardiogram repeated to check her heart function. They are evaluating whether or not to keep her on the Digoxin. I hope it comes back to where we will not have to deal with that stuff anymore. Her counts are still stable and climbing slowly. Her platelets were at 42,000 this weekend.

Abby and I have finished reading the complete Harry Potter series today. Book four was really good. She wants me to start reading her "The Hobbit" now so I plan to start that tomorrow. God bless, Bert

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Friday February 22, 2002 2:54 PM CST

DAY +63

This is certainly a long haul of ups and downs but things seem to be getting better and on track again. Abby's CT scan was clear except for a possible hematoma on her lower left quadrant of her trunk. We did an ultrasound of the area this morning and the surgeons will come up and evaluate it this evening but it does not seem serious. Preliminarily, the area looks like it is healing but the BMT docs just wanted to get it evaluated by the head guy in surgery just to make sure. She is in no pain, which has been awesome, and has led to her being less dependent to her pain pump and the process of weaning her off the pain meds entirely has begun. That has enabled her to be clearer and not as groggy. She has been bright and cheery lately. She is up early and takes a nap around mid-day and then plays and walks till night. Her sleeping is pretty good at night if you count not being bothered by the constant intrusions for meds and vital sign checks. She does wake up to nausea but that is being somewhat controlled a little better with adjustments to her TPN, which included adding a little Zantac. Along that line, we tried the oral meds again to disastrous effects. She throws them up every time. In relaying our frustrations to her doctors, it was decided to just try to get her to eat and lay off oral meds. That is a blessing. Last night she had part of a lunchable (two ham slices, a slice of cheese, a cracker, and two bites from a snickers bar)... HUGE! This morning had two bites of brownies, and this afternoon had her first six bites of lettuce with ranch dressing. She has been cleared to eat like the bunnies. Because her ANC is maintaining a good count, she is being allowed off the BMT diet so that helps. THE FRIDGE IS OPEN! She is doing well enough that they will allow us to get her out of here on afternoon pass this weekend. Hopefully, that will help boost her spirits and appetite as well. Good thing we haven't exceeded our 100 days at Ronald McDonald house yet! It is convenient to have that place close by.

Just as I was typing this, I received some awesome news. Abby's engraftment studies that were sent off on her first marrow check on day +28 has come back after more extensive testing and it still came back 100 percent donor. That's so awesome. This second Bone Marrow Aspiration done a couple of days ago will also be extensively examined to ensure that no change has occurred but we're optimistic that it hasn't. Her counts have been holding steady and today's counts actually was showing improvement which everyone is happy about. Her platelet count is now at 30,000. Her WBC and ANC have held steady at around 5,000. No word yet on her platelet anti-body test but hopefully she continues recovering to where it won't matter! God bless!!! - Bert

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Wednesday February 20, 2002 10:04 AM CST

DAY +61 UPDATE ON BOTTOM

And the roller coaster continues for us... more fear and anxiety. Abby stopped eating on Monday again and hasn't eaten since. She gets naseaus in the morning and evening now and it seems to be centered around those times, and she usually throws up then. Her pain at the surgery sites has diminished and we have eased her pain medication which is helping her be more alert and brighter. She has been out and about, usually in the playroom for an hour, twice a day, but she tires easily. The chief concern and worry is her trend since surgery of platelet counts dropping. Her white count seems to be holding consistently, but her platelets have continued to drop to today's low of 27,000. Her red count seems to be holding although it also has dropped slightly. Everything else in her counts seem to be holding and doing well but they want to look at her marrow again to make sure it is remaining cellular. She will have a bone marrow aspiration today. I will let you all know the news as soon as I am able. Please pray for our girl today. God bless, Bert

7 p.m.
I just talked to Dr. Krance, Abby's attending BMT Physician and he said he did not see any evidence of reoccurrence of her leukemia in her bone marrow slides. What a relief and thank God!!! That was the primary concern in wondering why there has been a drop in platelets, the possible reemergence of her disease. Now that it has been ruled out, what still needs to be resolved is why she is experiencing the drop in platelets. Her marrow is hypo-cellular, meaning that there are not many platelet making cells there. That could be attributed to again the trauma response of her marrow to her gall bladder surgery. She could also have antibodies against donor platelets now and they are checking for that today but it takes a week for the results. The other possibilities include adverse platelets response to a med that she is on and we have to now switch to an oral form of her heart med, Digoxin, which she has been getting IV lately. Her platelet count could just start rebounding again and we hope that will be the case. We may never quite know why her platelets have dropped if they recover quickly. I'm just so relieved that it's not a relapse. I can't tell you all how concerned both Suzanne and I were today. I'll keep you all posted and thanks for the prayers and Angel hugs! Love, Bert

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Sunday February 17, 2002 7:03 PM CST

DAY +58

Abby had a really good day today. She walked around the entire unit four times today and played in the playroom twice. She has been more and more mobile and the pain seems to be considerably lessened. Her appetite has somewhat returned and she has been holding everything down now for the past 36 hours. She does get nauseous in the mornings but it seems to wane by the afternoon. Yesterday, she stunned me by announcing she was hungry. I asked her what she would like and she answered me by asking, "What do you have?". Since she was still on a clear liquid diet, I mentioned broth, which she did not want. We settled on lemon jello and she had around six teaspoons. She also restarted drinking her coke again after the juice made her feel nauseous. After the docs visited her this morning, they said she could eat what she wanted but to start slowly. Today she asked me for a salad. Unfortunately, salads are restricted during the first three months post BMT. I had to explain to her that she could not have salad yet. She then asked me for a tuna sandwich, which I promptly made for her. She had four bites, along with some fruit snacks and some coke. Held it all down too! So I am even more hopeful for her recovery. She really is gaining strength every day. She was transfused with red blood yesterday and her platelets are still hanging in there but dropping. The docs were not too concerned because her white count is still doing very well. The loss could be attributed to the surgery trauma and the slow response by a still developing marrow. All in all I think we are getting over the hard parts now and hopefully on well on track for an April trip back home. Lord, I pray Abby continues getting well. We are now approaching over 70 days in the hospital and we are all just about over the whole hospital, vitals every four hours thing, for sure! Please pray for Abby's continued recovery and thanks to all for your support. Love, Bert

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Thursday February 14, 2002 5:47 PM CST

DAY +55

Abby continues to recover from her gall bladder surgery. She's been drinking about 8 oz of water a day, which is good for her. Still has not attempted eating anything yet but her condition seems really improved if you take away the pain in moving around. She has vomited a couple of times and seems a little worse for that in the mornings. The chief concern right now is preventing her from catching pneumonia. We are trying to get her to breathe more and more deeply. It's hard to get her to do because of the soreness in her gut. She is blowing bubbles for us and trying hard. We are also trying to get her to move around. Yesterday, we walked from the bed to the couch and back. Today we walked to the playroom and back. We also had to go down to get an X-ray of her chest. She had to walk a little to do that. She is obviously hurting but in her immuno-compromised state, we have to be extremely wary of the onset of pneumonia and keep her vertical as much as we can. We plan on doing more walking tonight. The X-ray did show some "Atelectasis" (collapse of air sacs) at the base of both lungs, which is somewhat typical in gastric post-op patients. We just can't have that condition expand and we will have her monitored closely. Everyone is trying hard, we just have to keep her moving which is hard. I think overall though, I am hopeful that she is tracking toward feeling better. She looks a little better for sure. Her temp is back to normal, which is a positive step. Her blood counts continue to do equally as well with a WBC of 10,380, ANC of 9,560, HGB of 8.5 and a platelet count of 93,000. One other stat of note: Her liver function tests are somewhat elevated but not to the point of concern. Just watching it all closely.

Thanks to all who have sent Abby Valentines greeting and gifts. We opened them all and she smiles every time. I do not know if we can ever thank everyone all the time and please forgive us. Just know that your thoughtfulness and prayers are very well received and appreciated.

God bless, Bert

P.S. For all you picture hawks out there, I plan on working up some more pics to post tomorrow. Got some really cute ones to share with you all.

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Tuesday February 12, 2002 5:52 PM CST

Surgery Update-

Abby came through her surgery just fine. They were able to remove her gall bladder laproscopically and without complication. The chief surgeon came out and told us he was very pleased how everything went. The gall bladder was inflamed, but removal was not difficult... it was in a good place. She is in pain, but we have her on a demand pump with fentanyl to help her control the pain. We hope this enables her to continue her healing now that at least a bad culprit is out of the picture. Thanks to everyone for your genuine concern, support and strength. Your prayers continue to be powerful medicine. God bless, Bert

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Tuesday February 12, 2002 8:27 AM CST

DAY +53

Today we ask for everyone's prayers. It was decided that Abby is to have surgery today to remove her Gall Bladder. She will go in this morning at around ten for the two-hour procedure. Talking to the Chief Surgeon last night, he attributed around 80% of her problems to her gall bladder and that removing it is the best option. We are, in a way, relieved that we're doing something and hopefully this will lead to her wellness quickly. She received red blood last night and they will have a bag of platelets with her today. They will initially go in through the bellybutton with a scope and determine if it can be removed laproscopically. They may have to remove it "traditionally" if the inflammation is too severe. May the Lord be with us today. - Bert

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Monday February 11, 2002 2:12 PM CST

DAY +52

Another step back this weekend. This is really discouraging. Abby popped another temp and feels really sick again. She hasn't eaten anything all weekend. She continues to drink and is thirsty but her nausea has returned and she has been throwing up more frequently. She only got out of bed a couple of times to do a forced walk. We had to go down this morning and repeat the ultrasound of her gut and her gall bladder was found to be still inflamed. That was really all they found on the ultrasound. Everything else looked good. Whether or not the gall bladder alone is contributing to all of her symptoms is what is being debated. More cultures have been sent off to perhaps identify a virus, because she is clearly very sick and it could be attributed to a viral infection, but so far all of her cultures have come back negative. They do not want to put her through the risk of an operation if it is not the gall bladder alone that is causing all of her problems. I can surely appreciate that, although Suzanne and I are feeling this is probably the root of our problem. Whether they can safely remove the gall bladder right now is our main concern. There is an increase in complications in removing it while it is inflamed. It would certainly take gall bladder out of the equation if it was taken out but balancing that risk is leading to more discussions with the chief surgeon and Dr. Krance, the head of the bone marrow transplant unit. We will see the GI folks some more and her endoscope might be repeated again to see if anything else could be learned from repeating those biopsies. In the meantime, they are planning to swap around her antibiotics once again and see if that helps. We continue to age exponentially. God bless, Bert

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Friday February 8, 2002 4:57 PM CST

DAY +49

Abby is responding very well to the antibiotics (Timentin, Nafcillin and Gentamicin) and the Amphoterracin. She has not had a fever since the Ampho spike she had three days ago. That has made her feel much better overall, however, the tummy pains are still there. The chief surgeon has made a recommendation to have the gall bladder removed, because in his experience, recovery from the colicystitus is difficult and that surgery is perhaps the best option. They would do that by laproscopy (through the belly button area). Right now, however, the plan is to keep her as comfortable as we can with her meds, allow the antibiotics and ampho more time to ensure the infection and lungs clear completely and redo the CT scan in a week and a half, reevaluate it, and go from there. Her counts are doing great as usual and no sign of any graft versus host disease. Her white count is stable now at 5,860 and her ANC is also holding at around 5,570. Her platelets have been holding in the 70,000 range. Her hemoglobin is dropping slightly every day but those cells have just not matured completely yet. Her other various chemistries are doing equally well. From a transplant perspective, she is doing really awesome and the opinion is she can tolerate a surgery without additional worry in that regard. I really hope the darn thing starts working and stops causing the pains without surgery.

She is now off all oral meds again because she tries and throws it promptly up. No luck on those oral meds, still! We have been trying the Actigal (Ursidiol) again to help her gall bladder but just no luck. I even scoured local area pharmacies for alternate forms but just capsules (very bitter when opened) and suspensions (very sweet) are available. We finally had her take a half dose down of the suspension with applesauce. Thought we had something going there until she threw up the next dose. On a positive note, She is eating again and drinking quite a bit. She eats little bits, perhaps four spoons of Beefaroni and some applesauce a day or goldfish crackers, but she is hungry and asks for food when she feels good which is great. Her favorite drink is coke and is hooked on it. Her thirst has really picked up the last couple of days. We are hoping that surgery can be avoided if her gall bladder starts working with the food stimulus and getting her moving around more.

Along the lines of moving around, Abby received a pass yesterday and went to the Ronald McDonald house for about three hours where she arrived to the open arms of her Uncle Alfredo. She was really surprised and excited. She ended up falling asleep in his arms back in her hospital room and then he had to leave to go fly around the Dallas area. She lasted around three hours away again before feeling sick and hurting. She asked to go back which always breaks our hearts. The nights have been better for her sleep wise. That's about all for now. Hope you all have a great weekend and we will try as well. God bless, Bert

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Tuesday February 5, 2002 5:41 PM CST

DAY +46

Abby, it appears, turned a little corner today... blessfully!!! The CT Scan showed some soft spots in the base of her lungs and inflammation around her gall bladder. The doctor's decided to change her antibiotics to a different class, anerobics, I think they called it. They started her on Flagyl and Amphoterracin (Amphoterrible!!!) last night and that experience was not good. She threw up for three hours after the Flagyl and then popped a 104 temp with the Ampho. Terrible night to say the least. However, this morning, she was almost normal in temp and had less pain and Abby really seemed to recover a bit. Her white counts had really soared overnight to 10,360 with an ANC of 9,950. She is still making platelets and is now up to 72,000, up from 43,000 a week ago. Initially, I was concerned with the surge increase in white cells but, as it was explained to me, it was the marrow doing what it was supposed to and cranking out the white cells to fight the infection. I'll buy that and the doctors were not concerned but somewhat pleased at that result. The Flagyl was stopped after last night, much more to our insistence than anything else. We were not going to have her violently throwing up continuously again. She had the same reaction earlier in her treatment to the Flagyl so we were not all that surprised but agreed to go forward with it last night just in case it was not the Flagyl the first time... but it was.

We had to go down to take a MUGA (don't ask what that stands for) test of her heart and she was a little reluctant because we left kinda early this morning to go do it. The test had them draw some of her blood, aspirate it and add nuke markers to the cells, then reinject the blood back into her. The collector was placed over her and pictures were taken in conjunction with her heart rate to evaluate her left ventricle squeeze. Haven't heard anything on the results yet. When we returned Abby wanted to meet with her teacher and had an hour long class session with her. She drank some coke and then munched down FIVE goldfish crackers just as the Gastro docs came in. She ended her meal with a quarter of a Dole fruit Popsicle!!! Unbaaaleeevable! The gastro docs wanted to keep evaluating this trend and said that her gall bladder might have a condition called colicystitus and that is why it was showing inflammed on the CT scan. Abby the surprised me again by going out to the playroom with the Child Life person and worked on crafts for an hour. What a transformation... from a sick, can't do a thing but sleep and moan gal, to up and about and feeling much better gal. Hopefully, it isn't an aberration and she will continue on this trend! More to follow for sure but what a blessing today!!! Those prayers you all have sent pack a real wallop! Please keep them coming. God bless, Bert

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Monday February 4, 2002 11:52 AM CST

DAY +45


Abby is very sick and both Mom and I are extremely worried. She is carrying a fever now of around 102. Her stomach pains are more severe and she grimaces a lot. Although her fever dissipated on Friday to the point that she no longer had to have antibiotics, it reemerged Saturday and she was put back on them again. All we could do was keep her comfortable yesterday and increase her meds. She is really struggling and it's hard to watch her in so much pain when she is awake... kinda helpless. She just kinda drifts in and out of sleep now and is not engaging in anything at the moment. Today we are going down to have a CAT scan done on her trunk area and a pulmonary function test where they put some nuke in her blood stream and watch it squeeze out. The results of her earlier echocardiogram was inconclusive so they will be repeating it with another type of test.

This is definitely more physiological type of symptoms that have come up. I look at all of her counts daily and they Are doing marvelous. Her ANC is 3,390 and she is making platelets and red blood now. Her chemistries, which gage function of some the organs like kidneys and liver, have all been good as well. So everyone is stumped and hopefully the CT scan will help reveal something. The Gastro folks will also be up to see us today and discuss some possibilities with us. Her gall bladder should probably have recovered by now so when we repeat that test and the gastric emptying test again is something that we will also be discussing I'm sure. But for now the immediate concern is her pain and temperature. Please pray for us tonight and God bless. Love, Bert

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Thursday January 31, 2002 4:29 PM CST

DAY +41

Hard to believe we have been in the hospital now for over 50 days. Abby's stomach issues have been frustrating everyone here. She seems to have regressed again to more pain and nausea for the last three days and has stopped eating and taking oral meds completely. Yesterday, we decided to really attempt another try at getting her up and moving. I had some walks with her twice around the BMT Unit and once again this morning. Her red blood count is low and she is feeling really tired at the moment. She will be getting transfused today with red blood cells and maybe that will give her more energy for her walk tonight. It seemed to help her with her tummy as well as making her tired and she slept well through the night. Auntie Karen stopped by for a couple of days to visit so that is getting her happily tired out too. She seems to be improving again, but I always say that guardedly now.

She popped a temp, finally, two days ago of 102 so she is on antibiotics again for three days. I say finally because she has been holding on to a low-grade temp for well over a week now. She seems to have been fighting off a cold so that may have contributed to it. So far all of her cultures from urine, stool, blood, and mucous have come back negative. That coupled with the fact that her temp is receding back to normal, is good news. Hope she recovers soon so we can enjoy the really good news of her marrow transplant doing really well. And it is good news on that front. She is starting to make platelets and her lymphocytes, which are the last to recover, are coming along as well. As we leave the unit for procedures like echocardiagrams and such, she seems to be getting more comfortable with wearing her filtered mask. She'll have to wear one for a while until at least day 180 whenever she is out of a closed, safe environment and around people that are not family and close friends.

I posted some new pictures and I hope these will be able to be displayed. Sometimes they just do not load up for some reason. I will be updating that today for all of you that love the photos! Love to all and God bless, Bert

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Saturday January 26, 2002 4:22 PM CST

DAY +36

Sorry for the reporting delay but we have been busy battling Abby's tummy issues. But before all that, let's get to what is really important. We received news that Abby's engraftment studies came back extremely positively. She is 100 PERCENT DONOR MARROW (all Suzanne's) which is the best result we could possibly have hoped to have received. Her counts are doing extremely well and things along her transplant front are very positive indeed! She has shown no evidence of Graft vs. Host disease, on top of everything else, which makes this news even better.

Now for the unpleasant side of things. Abby continues to have stomach pains and nausea. It seems to wane for a period after she gets her stomach meds, then fades to pain and eventual inability to even to listen to us read to her. The Gastric folks decided to have her try an oral med to help stimulate her gall bladder function called Actigall. How fun it is to try to get Abby to take oral meds... NOT! It is a fairly large capsule so she can't swallow it, although she tried and promptly threw up. We finally found that mixing it in applesauce works or also chocolate frosting. We hope this works because the alternative will probably be surgery to have it removed. We don't care for that option at all as you all can imagine, specially with a immuno-suppressed child. The gastric folks are optimistic that if we can get the med in her that this will work. They have seen this happen in kids who are on IV Nutrition (TPN) for a long period of time. We are hopeful this will work. So far we have gotten her to take three doses.

She was allowed a six-hour pass to go to the RM House and she loved the break away from the hospital. Within three hours though she was hurting and knew that she had to go back for her tummy meds. It broke our hearts because she really wanted to stay and tried so hard not to have stomach pains. The next day brought the stomach (gastric) emptying test and that entailed Abby having to eat a bowl of scrambled eggs laced with a nuke tracer. She was a real trooper and ate a half a bowl of this stuff. Pretty good considering she hasn't eaten much. No way she was gonna have a gastric tube forced into her to get the stuff in! Then she had to lay on that same table again for 90 minutes with that big collector hovering over her while she was taped down. She did really well, I think mainly because she had endured it before with the gall bladder ejection test. The test came back also with poor results. It was estimated her stomach was taking six times as long to clear so they switched her med from Phenigrin to Reglan to help her digestion. Now we have to wait for the meds to do their trick and that is the hard part. She seems to be doing slightly better today... again the pain being cyclical with the med delivery. She is worse at nights and poor Suzanne has bore the brunt of Abby's agony. We pray this will get better after the weekend.

Abby also began sneezing and had a dry cough which caused a little concern. She has been battling a low-grade fever now for three days. Both seemed to have waned with her temp near normal today. She had a chest X-ray, which came back clear and had her nose flushed. Yep, her nose was flushed with saline and sucked back out, then cultured. It came back negative for flu or virus, which also was good news. This nose flushing is a new hospital torture to endure... the hits keep coming. So again, day-to-day on this stomach thing. Please continue to keep us in your prayers. God bless, Bert

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Wednesday January 23, 2002 8:50 AM CST

DAY +33

Abby's new marrow is doing really great. Her ANC is at 3,500 and her white count is at 4,090. She is not showing any signs of Graft vs Host and that is also good news. Although her white count being up is very good, she is still severely immuno-compromised and will be so for a while until her immunities fully recover. We are still awaiting the results of Abby's marrow engraftment studies which will tell us how much is Abby's original marrow. We are hoping for 99% or better being Suzanne's marrow. If the differential is wider and more of Abby's original marrow is there, they will give her some of Suzanne's lymphocytes to help entrench Suzanne's more solidly in Abby.

Yesterday brought another test in our attempt to try to figure out the source of Abby's abdominal pain. It was called a gall bladder ejection test. No test is ever fun and this one is no exception. She had to hold still for an hour as the nuclear meds painted her liver and GI track. There was a big oval collector hanging over her as she lay there. We watched TV and I had to attend to her every itch and hold her hand. She was scared for a while but settled down somewhat. You would be amazed at how many different itches you get when your trying to lay still. The preliminary results show that her gal bladder is barely, if even, functioning. It never filled and that could be the source of all the pain and stuff. All the doctors (BMT and GI) are getting together today to discuss the results and figure solution options. Tomorrow she is going to have a stomach emptying test to at least baseline that function and see if there is anything else going on.

For today, the doctors are really trying to get us out for a six-hour pass. Abby is so depressed after being here confined for close to a month and a half. The original plan was to do it to get her up and about which would help in improving and stimulating her stomach and GI track motility. We are planning to take her to the Ronald McDonald house and play with her in the room. She will have to wear her mask everywhere except the room and in the car and she hates that mask. It will be a good drill for us. If she does not do well, we'll head right back but we have to try. Hopefully, she'll be comfortable enough to give it a go. God bless, Bert

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Saturday January 19, 2002 10:19 AM CST

DAY +29

The good news is Abby's GI track, both upper and lower are fine with the final pathology report finding nothing on the biopsies they took... so no explanation for the tummy pains. It has waned some the past couple of days although Suzanne had a terrible night with Abby fighting stomach pains the night before last. The BMT team decided to start her on a steroid (metaprednisone, or something like that) to see if that would help. She is still not eating and sipping small sips of coke only. Oral meds are still a no-go for her. So we are day-to-day and hoping it passes.

Yesterday brought yet another procedure abby had to go through. She had her +28 day Bone Marrow Aspiration for the engraftment studies. We will not get anything back on that until at least mid-week. On top of that, she was under watch while she received another round of IVIG (intravenous Gammaglobulin). So she was feeling really "punky" and procedured out for sure! Hopefully today she will be better. She had a better night last night so that was a blessing. Thanks to everyone for keeping us in your prayers. Daddy Bert

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Thursday January 17, 2002 4:07 PM CST

DAY +27

Abby went down this afternoon to the Gastro-intestinal folks where she had an endoscope check both her upper and lower GI tracks. They put her to sleep as they performed the procedure. The results are promising in one way in that they found everything being normal and no evidence of Graft vs. Host. They think her stomach issues might be gas associated and are discussing some med options. We hope they find something because Abby is absolutely miserable with this. She gets her stomach meds every six hours and she is sleepy for the first three hours and clutching the bucket for the other three. We pray this passes soon as it is tiring us all out.

The real good news is her marrow is still cranking out the cells and that is doing really well. Her ANC today was 1,970 and her white count was at 2,580. They are seeing a lot of new immature cells (myelo at 7% and monocytes at 10% to name a few) so things are really going good at that. She will have her engraftment studies performed tomorrow to find out the percentages of donor cells in her marrow. So she's going to sleep again tomorrow for a Bone Marrow Aspiration. We are really on schedule when it comes to that so thank God!!! Thanks to all for your prayers and please keep them coming... they are really working and gives us strength. God bless, Bert

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Monday, January 14, 2002 1:30p.m.

DAY +25 update on bottom

DAY +24

ABBY HAS ENGRAFTED!

Abby had an Absolute Neutraphil Count (ANC) of 740 on Saturday, 680 on Sunday and today she has an ANC 1,810!! Her white count is up to 3,120 (norm is 5,000 to 14,500) and her red blood is holding steady at 9.5. She did need platelets last night as they are the last things to rise, but her blood counts and body chemistries are absolutely fantastic! They are planning to stop her IV antibiotics and her GCSF (white count booster) today.

It has been a tough weekend, however. Abby continues to have very bad stomach pains that may be attributed to the new white cells repairing and cleaning up from the mucositis. It also may be gas. She has diarrhea and still threw up at least once every 12 hours. It comes and goes with her stomach med, Ativan, with good times and bad. She tells us right away when her stomach hurts. It was so bad at one point Saturday morning that we insisted on talking with the doctors. We came back up on the pain meds and they gave her some phennigrin at a slow dose and lower rate and she did finally achieve some level of comfort after a terrible night. We battled it again on Sunday with it being a little less severe. Today, the docs took an X-ray and are going to try some symethecone to help with the gas. Unfortunately, it's an oral med and those are just not happening yet with her stomach discomforts. Perhaps stopping all the antibiotics will help as well.... anything please!

So the plan is now to figure out her stomach thing (it's not graft vs. host yet) so we can start her eating and taking oral meds, and most importantly, wean her off the pain meds. If all that happens, we can go outpatient and settle in together at Ronald McDonald house or at Auntie Carmen's until her immune system comes back to par. She is still at risk for infections and stuff until her immune system recovers sufficiently enough at around day 100. She will not be fully recovered for a year then she will have to have all of her immunizations repeated.
God bless, Bert

Tuesday, January 15, 2002 DAY +25
Abby counts continue to rise which has been absolutely fantastic. Her ANC today is 2,480. Her stomach problems however are our focus. She now seems more naseaus than crampy. Her Xray was negative and they did an unltrasound today also with negative results. It can either be a stomach virus or some sort of graft vs. host issue. She will be seen by the Gastro Intestinal folks a little later to see if they can help. In the meantime, they have changed her stomach meds by adding Reglan to the Zofran and Ativan. I'll keep you all posted and please, keep us in your prayers. God bless, Bert

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Friday, January 11, 2002 at 06:54 PM (CST)

DAY +21
MORE GREAT NEWS

First let me say that the PBS special featuring Abby is being shown on PBS this week on a show called "HEALTH WEEK". It is a half-hour special entitled "Hospice and Hope". Since this is a syndicated show, not all PBS stations pick up or air "HEALTH WEEK". Check your local listings or call the station programming folks. I know it will air in Hampton Roads on Sunday Morning. Unfortunately, the station in Houston does not air Health Week, but we will get the tape sent down to us. I hear it came out really well.

Today, Abby's Absolute Neutraphil Count is up to 400 and her white count is up to 510!! This has come with a little help of a white count booster called GCSF, or neupogen, but we'll definitely take it! She had 18% monocytes counted in her blood so her Marrow is really pushing to make new cells. Her red count is below 8, at 7.5, so she will be transfused with some red blood cells today. The Doctors are really pleased with her progress. Although she is still fighting off being sad as well as her stomach cramps and diarrhea, she is doing so much better every day and they are starting to wean her off of her pain medicine. The biggest thing is getting her up and about and hopefully eating again. She continues to take some small sips of soda, but that has been the extent of her intake. I am happy to tell you, though, that Abby got out of bed and onto the couch to look out the window to play "I spy" with me. Then she got up and went to the playroom with the Child Life Specialist, Ms. Elizabeth, and her Auntie Carmen to play Barbies and a game of Trouble, wearing her PJ's and fluffy slippers! She even took two walks around the BMT Unit! That was the first time she left her bed for a good bit since essentially the 13th of December. A good way to rid herself of the blues for sure! She has also done all of her homework for her new teacher who she sees once a day for an hour. To my surprise, she has been reading some of the first grade readers. How awesome is all of that!!!

The Doctor said that the goal is to get us discharged to home care at the Ronald McDonald house by next Friday! So now we hope with her getting up a little more and her tummy getting better, she will start to eat and take her oral meds. That is our goal. Get her to take oral meds so she can be released. Of course we still cannot leave Houston until day 100, which coincidentally happens to be EASTER SUNDAY! Yep, March 31st is day 100 and it is also Easter Sunday. Cool!!!

As we approach an ANC of 500, for hopefully three consecutive days so we can actually announce that Abby is completely engrafted, we will enter the next phase of her recovery from transplant. Now we will start monitoring her for graft versus host disease. That is why she will stay here in Houston to be closely monitored up to day 100. We will have to come in regularly for blood tests and checkups. A little graft versus host is good to see in the beginning as it gives an anti-leukemic effect and attacks and kills any remaining leukemia cells. If it remains after 100 days it will be considered chronic and we will have to see what kind of meds will be needed to keep it in check. But for now all is hopeful and we look forward to being "sprung"!

Peace and love, Bert

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Wednesday, January 09, 2002 at 11:58 AM (CST)

DAY +19
GREAT NEWS- Engraftment is starting to take place! Praise the Lord!!!

Abby's new marrow is growing and her white count and Absolute Neutraphil count were at 160 today with good cells visible. Yesterday, the beginning of new blood cells were seen (monocytes), and today they have matured so we are on the way! Abby's mucocitis has almost cleared and she is drinking more coca cola and talking much better. She tried some chicken soup yesterday as well! Still battling some diarrehea and stomach pains though. Abby is still throwing up but certainly less frequently, perhaps once every 12 hours now. She also had some leg cramping which is typically seen in growing new marrow.

She has definitely been more animated and even started class yesterday wit a teacher from the Houston Independent School District. She will have class in her room for one hour, four times a week and she was absolutely excited and happy to start again with her class work.

Unfortunately, we have some sad news. Delaney Wright, age 5 1/2, passed away on the 7th from her fight with this terrible disease here in Houston, a long way from her home in San Diego. Our thoughts and prayers are with the Wrights as they mourn her passing. May god continue to bless them with all the courage and strength they gave their daughter. Angel Delaney is now pain and leukemia free and celebrating with her grandma in heaven. Her web site is www.caringbridge.com/ca/delaney if you would like to post a note to them.

God bless us all, Daddy Bert

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Sunday, January 06, 2002 at 03:12 PM (CST)

Day +16
NEW UPDATE at end of this entry.

Hi Everyone,
We have anxiously been holding out on updating you all because Abby's condition is relatively unchanged and we are on pins and needles as we await for engraftment of Suzanne's marrow in Abby. She has this week to do it so please say an extra prayer for Abby as she tries to groe her marrow.

Although Abby has improved physically, her counts are steady. Her white count has bounced up and down between 50-90. Normal is between 5,000 and 14,500. Today it is at 70. Still one Neutraphil, Mary is hanging in there. Need 499 more of her for three days straight to prove engraftment. A rise in the white blood count will be the first indication of marrow growth. Her red count has held steady which is no surprise since they survive a while in the body and we're not killing any of them now that her chemo is done. Platelets have been steadily dropping since her last transfusion of them four days ago. They are usually the last to recover and don't last but a week in the body. She will probably get platelets again tomorrow. The last time she received platelets, she gave me a scare because she popped a temp of 102 right after she received them. They usually pre-med her with tylenol to prevent these temp reactions but because she could not swallow, we bypassed the tylenol and here came the fever. Fortunately it lasted only three hours but her blood was immediately cultured and she was switched to a different set of antibiotics. They did not take any chances in guessing whether it was a reaction to the transfusion or not considering her immunosystem is so suppressed. But thankfully, it was and she never popped another temp... knock on wood.

Abby's mucositis seems to be waning by the day and that is a good sign and perhaps we are getting closer. Today she had more energy and played for a while, and of course, I read to her from Harry Potter's fourth book. She has been eating up those Harry Potter books. Her naseau has been waning as well and we seem to have a good balance of meds in her to cover her pains and naseau. She even took three sips of coke today for the first time in two weeks. I'm going to try some chicken soup soon to try to get her stomach back in work. After all the heaving she's been doing lately, it's probably the size of a small walnut.

So small steps. Overall Abby is well though and we are ever vigilant and watchful of progress. We'll keep you all posted. God bless, Daddy Bert

7 Jan 02 - DAY +17
Abby is doing really well today and is in better spirits and able to drink and talk a lot more. Her counts are still low and we wait patiently. She'll receive a bag of platelets today. I added two pictures to the photo album.

I'm changing our address from the Ronald McDonald house to my sister's address for Abby. The Ronald McDonald house will require us to leave after 45 days for 7 days and then we can return for 100 days. Weird rules, I know. So to ensure we do not loose any mail, please send any coorespondance to there. God bless, Bert

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Wednesday, January 02, 2002 at 04:21 PM (CST)

DAY +12

New Pictures Added
HAPPY NEW YEAR everyone.

Abby's condition has been unchanged which is good in one respect because she has had no further complications. Her Mucositis is still with her and it is very painful for her. She cannot speak to us at all because it is too painful for her. We keep increasing her pain med, Fentanyl, to try to keep her at least comfortable during this difficult time. We are all expecting her white blood counts to start to rise as she engrafts this week so please pray that happens. She did have a Neutraphil flying around in her and Abby named her Mary. Today she has five. So it is a hopeful sign that things are beginning to take hold although the counts vary from day to day. When her counts do start really climbing, her mucositis will hopefully dissipate quickly. It has been a tough go this week. She is still not eating and they are continuing to support her with TPN and Lipids (basic IV foods). She will receive a bag of platelets today as her body goes through them pretty quickly and her production not started yet. She has lost virtually all of her hair except some tufts up front. She asked me to be bald with her and for those that know me, that was not a reach! New Years Eve I shaved my head. She was really smiling when I walked in on New Years Day!

Abby also had another surprise on New Years Day. Her Uncle Alfredo (Fritz) came flying in (literally since he is a pilot for Delta Airlines partner ASA) from Georgia and walked into the room. She smiled so broadly. Uncle Fritz read to her and gave her lots of love. He leaves today but promised Abby he'd fly down when she called him needing more hugs and kisses. That's all we have for today... it is day-to-day but everyday without a fever (knock on wood) is a good day! Please keep us in your prayers. They are felt and much appreciated.

Daddy Bert

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Saturday, December 29, 2001 at 11:57 AM (CST)

DAY +8 NEW PHOTOS ADDED

These are the worst of days, hopefully, for our little girl. She is doing as expected at this point, thank God, and nothing is off track. She is just really having a tough time with the mucositis and is not speaking, just using hand signals. If I could describe the mucositis, I can now relate to what a BMT patient, an active duty Captain, at Wilford Hall told me last year. When she opens her mouth, it looks like the Alien, from the movie Alien, when it opened it’s mouth. It's full of sticky, thick mucous. She allows me to suction her out occasionally, but resists it mostly. The rinses make her feel somewhat more comfortable but it is difficult. She has chapped lips and has sores in her mouth and throat making it extremely difficult for her to swallow. When she sleeps, she growls because of all the mucuos in her esophagus. Oral meds are even more difficult for her to swallow so most times we have to pass because it usually comes right back up anyway... just more pain for her. As long as we stay on top of the pain pump with Fentanyl, she does manage to at least tolerate things and is able to play. So that is the goal, just keeping her comfortable with anti-nausea and pain meds until she starts engrafting. Her hair is starting to fall out rapidly. Poor thing has hair all around her on her pillow. She still gets very nauseous and doesn't eat. She did request a tuna sandwich the other night and after racing around making her one, she ate three bites. It's a start. We now have one on ready stand-by!

So far Abby has required two bags of packed red blood and two bags of platelets. Her counts are still suppressed and we don't expect them to start recovering for at least another week. Then she will start making her turn for the better. We are praying for the big engraftment day, which again is when her Absolute Neutraphil Count (ANC) is above 500 for three days in a row. Right now she is at a miniscule 40 and still very immuno suppressed, but at least it's something measurable. Lots of antibiotics and stuff going in her right now to help prevent any infections. Abby doesn't want to get out of bed much and has been enjoying me reading to her. We have finished the second of Harry Potter's four books and have completed five chapters of book three. It is how we spend most of the day since our last update. She does get up in her bed to play occasionally, but that usually doesn't last long... perhaps an hour or so at the most.

Suzanne and I are holding up well with our day-night swap. Getting away from here every day helps keep us focus on Abby and take good care of her. Suzanne is still a little sore but is doing well now. We are planning a party at the Ronald McDonald house when Abby is able to leave here, hopefully not long after her engraftment day. Then we will start an every other day clinic visit to monitore her closely to day 100+, providing of course, she doesn't pop any fevers. Then, we will be able to return home. So please continue to keep us in your prayers as they help us all and give us strength. We trust in our lord to keep her tracking along this path to her cure from this horrible cancer. God bless, Bert

P.S. Those prayers have been helping our other two little girls. Abiagael is at home now after her bout with pneumonia at Portsmouth and Delaney is well enough now from her pneumonia to start her chemo at MD Anderson and hopefully that will rid her of her leukemic cells so she can continue on with a cord blood transplant.

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Wednesday, December 26, 2001 at 12:40 PM (CST)

Day +5

Hi to all:

Christmas has now come and gone and Abby's condition has changed slightly. She started itching all over, particularly on her face and nose. So far no rashes. We probably won't see rashes, which is an indicator of Graft versus Host disease, until the new marrow starts producing blood cells. Right now her new marrow is hopefully setting up house in her bones. Her counts are dropping but particularly she has ZERO white blood cells so infection fighting ability is nil and we are extremely cautious. Everyone thinks her itching could be contributed to a reaction to the Morphine. She started her Morphine pump a couple of days ago to control the pain of the Mucositis. Her itching then became noticeable. The Doctors decided to change her from Morphine to Dilauden yesterday. She still itches but it is some what controlled by Atarax, a substitute for Benydril. Unfortunately, she has to swallow the Atarax pill and that is getting increasingly difficult with her Mucositis, which has worsened. She now wheezes through her mouth when she sleeps. She still is battling nausea and throws up mucous. With the increase of pain meds, coupled with sedatives like the Atarax and Ativan, she is very drowsy and can hardly stay awake most of the time. She does try though.

Christmas eve we all watched the Gnome Mobile, an old Disney movie that Abby had been dying to see ever since she had read about Gnomes. I finally found it here in a Blockbuster as a rental and snatched it up. We had been searching for that movie a while now. Of course we watched some Christmas specials on TV as well. Carolers came and visited us and sang outside the door. It was nice. When Abby finally crashed I left for some sleep at the Ronald McDonald house. I arrived early Christmas morning and Abby awoke when I stepped in the room. Luckily, Carmen and Alfred had come the day before and we managed to stash all her goodies in the bathroom without her realizing it. When I looked around to see what Santa had left, low and behold we discovered the stash in the bathroom. She was very excited and somewhat mystified that Santa could still find his way past the BMT Unit checkpoints. She managed to unwrap, with mom and dad's help, all of her gifts before she crashed at around nine in the morning. She loved everything and all the surprises really made her smile. I then spent the next five hours, whew, building her Play Mobile Hospital that she wanted real badly. She did manage to play with it a little, but her day was in and out of sleepiness. She insisted Mommy stay with us on Christmas so we all stayed together. One of the charitable organizations on the Unit here, Her Grace Foundation, came around and caroled and then treated us for the third time this week to a traditional holiday meal. They are truly some real angels bearing gifts and always doing something or another for us all who have children on the BMT Unit. Carmen and Alfred came along at about that time so Suzanne and I had the opportunity to enjoy a meal together. So goes the holiday.

Abby really misses her friends Madison and Caroline and her school days. She cried for a while, she misses them so much. Abby received a photo album and tape from Madison with pictures of a "Typical Day at School". It included photos of getting on the bus, the classroom in action, the teachers, the principal, the bus drivers, the other neighborhood kids who are there at the bus stop in the afternoon, and of course pictures of her beloved Madison and Caroline. That made her really happy and took her edge off.

Thank you everyone and hope you had a Merry Christmas. I'll try to post some Christmas photos soon. Love, Bert and Suzanne

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Monday, December 24, 2001 at 12:18 PM (CST)

Day +3

Hi to all:
Abby is doing as well as can be expected, if not better. She goes in and out of headaches, body aches, and nausea and throws up a couple of times per day. Abby just started complaining of a sore throat this morning. As we have suspected, this is just the beginning of the mucousitous she will have as the fast growing cells of her mouth and esophagus are killed as a result of her treatments.. So far no real mouth sores though. She has been more active, even getting out and walking into the unit play area to choose a new game for her and I to play. Her blood pressure has been waffling to the high side and this could be a side effect of one of the meds she is on, FK506, which is a drug to help control Graft versus Host disease. She receives this daily and will get it for several more weeks. So we wait for those blood counts to start rising. Right now she is perhaps at her most vulnerable, with her white count down to nothing. We are trying to be extra careful with washing and stuff. Anti-bacterial washes for mom and I every day. Change clothes every day as well. We hope and pray for engraftment soon so her counts start to rise and she starts feeling better. She still has her hair, believe it or not. We expect that to all fall out within a week or two and then she can regrow her new hair. We are planning to watch a movie together tonight to celebrate Christmas Eve. I'll come in early tomorrow for Christmas and we'll unwrap our gifts. She is all excited as she sees her pile growing under her little tree and around her room.

Suzanne is feeling better and came in yesterday to relieve me. She is still sore but it's tough to keep her away from Abby. I have to admit, it was nice to get away for a while and get some sleep at the Ronald McDonald house. When I arrived, I saw a friend we have been communicating with through the AML list I'm on of patients and caregivers. Her daughter, Delaney, is a year younger than Abby and was admitted to MD Anderson from California. They are doing a clinical trial to try to get her in remission so they can proceed with a cord blood transplant. Unfortunately, she has pneumonia and has to recover from that first. Abby friend Abeigael is also still at Portsmouth hospital battling not only pneumonia, but the flu. Please pray for both of these little fighters as they progress through their treatments.

Lastly, but certainly not least, we want to wish each of you a Merry Christmas. Even as we sit in a hospital room with our little girl as she fights this cancer, we are heartened and excited for the future. We will enjoy our Christmas together. God bless, Bert

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Saturday, December 22, 2001 at 07:27 AM (CST)

DAY +1

NEW PICTURES ADDED

Abby's infusion of marrow went well and quickly yesterday. Her blood pressure went up but she rode it out and fell asleep soon after. All told, it took roughly 5-10 minutes to infuse and was as promised, anti-climatic. Just the way I like it! Abby watched her Christmas show as the Doctor, nurse and I were hovering looking for any side effects. None came and she did really well. Now we wait for the engraftment to occur which should be in a couple of weeks. Today she will get a low dose of chemo called Methotrexate. This will help her to engraft.

Suzanne called me on her way to Auntie Carmen's house and she was in some discomfort and ready to sleep. She rested over night at Carmen's. I'm holding up well despite the interruptions in the room like IV beeps, bathroom checks on Abby and vital sign checks. Abby has been in and out of stomach, head and body aches which they give her meds for to try to keep her comfortable. It helps her and she rests. It's still tough when these bouts occur because she feels badly and wants me to pray with her. She was up all day yesterday, though, so she is starting to happily wear me out doing fun things as well. We finished reading the first Harry Potter book and she insisted we start the next one, which we did. Between that and her Light Brite, we stayed busy.

I will be trying to post new pictures of Abby in the hospital today if I get a chance. Have some great ones of the marrow infusion. I think you all will be surprised on how actually small the bag of marrow is. I was! So stay tuned and I'll update the pics. Also, if you all can say a prayer for Abby's little "Kemia" friend Abaigeal, who is in Portsmouth Naval Medical Center fighting off an infection stemming from her treatments fighting leukemia. Pray they can all be home for Christmas as last year this seemed to have happened to them as well. Christmas' are tough for our little girls. God bless, Bert

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Friday, December 21, 2001 at 10:14 AM (CST)

DAY 0 - TRANSPLANT DAY!

Hello Family and Friends,

Today is the big day! Suzanne will go to Methodist Hospital next door and get her marrow harvested around noon. After they process the marrow, it will be brought over fresh in a bag for it to be transfused into Abby like a blood transfusion. We anticipate it being here around 6-7 p.m. Ahe will be closely monitored during the infusion for blood pressure and heart function because it will be a large volume dripped in. Should take around an hour and a half. Then we wait and pray for engraftment which should occur within 7-21 days. I will take pictures and post them up for tomorrow's update.

Abby completed her last radiation treatment last night and we threw a mini party. It was her Half Birthday party as well as her end of conditioning treatment party. She is still a little groggy but is in better spirits now. She looses control of bathroom functions at night but will not put those "hospital pants" on at all. "Daddy and Mommy take good care of that." she tells the nurses. So we are hanging.

Suzanne will be taken to Auntie Carmen's house to recouperate. Probably will be out for a couple of days so I have some double shift work. I'll make it though. It's easier when she feels better. Her doctors have been wonderful in adjusting her meds for comfort and that has been a blessing. So it's off to the room after this load of pajama bottoms are washed. I think we have some more Harry Potter to read today. Take care to each of you and blessings to you and your family this holiday season. Keep those prayers coming! God Bless, Bert

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Wednesday, December 19, 2001 at 09:25 AM (CST)

DAY -2 update:

Abby is progressing along and things are still on track for her to get Suzanne's marrow on Friday. Abby has been not feeling well, and has not eaten but she is starting to feel a little better since the chemo ended Monday. The Ativan has been helping her stomach pains and she did play with her new nativity scene last night for a half-hour before she got tired and went to sleep again. She has received a gamma globulin infusion, which are packed antibodies, to help her immunities a little. She also started Campath, which are monoclonal antibodies, which help as well. Unfortunately, they do cause reactions when infused and she spiked a temp with them. But it soon subsided and she usually sleeps them off. Still scares me every time though. Her eye drops ended yesterday so she is pleased about not getting those anymore! They are used to help her eyes stay moist during one of her chemo's, theARA-C.

Suzanne and I are into our routine now. She has the night shift and the early morning radiation treatment. I have the day shift and the evening radiation treatments. We have a respirator mask that fits her now even though she absolutely hates wearing it. She has to wear the mask whenever she leaves the unit.

The Ronald McDonald house has been a good place for us to crash out and recoup. Yesterday evening they had Southwest Airlines provide us all Christmas dinner and gifts along with the Houston Rockets basketball team. Glen Rice was passing out the gifts. I told Abby about Santa's helpers in the House and brought her the gifts they gave her this morning. Her gifts are starting to gather under her Little Christmas tree by window decorations. She is waiting till Christmas to open them. Speaking of gifts, we want to thank you all for your prayers first and foremost. One of Abby's Smile Quilt Angels also brought a gift down to us from her church and we cannot thank them all enough. How nice from folks we do not know to be so kind and generous. Everything helps and we are so thankful for all of our blessings as we go through this. Thanks to all and keep those prayers coming!

Love, Bert

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Monday, December 17, 2001 at 01:40 PM (CST)

DAY -4 update:

Friday, Dec 14th, was a good day considering it was day 2 of her Ara C chemo. Her appetite was gone though and she only had a couple of things to eat . She threw up a couple of times but otherwise was pretty active. We all made a gingerbread train and she played for a half a day on the computer discovering clues on Blue's Clues. Auntie Carmen came in and played some games with her and we even walked and ran around the Unit. She did some arts and crafts and even met an astronaut... Rex Walhiem, who will be on the next shuttle mission. So it was a good day until late evening.

They started her Cytoxin on Friday night and her discomfort started an hour later. Suzanne had a tough night with Abby vomiting, stomach pains, and diarrhea . They gave her a couple of anti-nausea meds, Zofran and Phenigrin, along with Morphine. It makes her sleepy so it's good to see her rest instead of suffering. She just woke up enough to moan and we would hold her and massage her arms and feet. When I came in Saturday morning to relieve Suzanne, Abby was very sleepy from her meds but still woke up to moan about her tummy hurting, to vomit, or to go the potty, which is next to the bed in case of emergencies. At one point when she went to the potty, her whole body stiffened with a small seizure. We called the doctors and it was thought to be a reaction to the meds, particularly the Phenegrin. As the day progressed she looked very restless and had dreams that would wake her up. She also started twitching a lot. After a second seizure, they did some electrolyte tests on her blood and her sodium had dropped to around 118. Normal is about 135-145. She now was in and out of consciousness, lots of twitching, and when she woke up she could not talk and did not respond to us or seem to recognize us. Very scary stuff. Loss of sodium can cause this but because one of the chemos can cause neuro-toxicity, they wanted to do more tests and have her sodium brought up carefully in the Pediatric ICU, where we stayed until Saturday night. Abby had both a CT Scan and an EEG (brainwave) done and they were all normal. After her sodium was slowly adjusted back to normal with IV fluids she started returning to normal again and was once again her nauseous self. The end result was that Cytoxin caused an abnormal ADH (hormone) secretion from her pituitary gland. This hormone regulates water retention in the body and it caused her sodium to drop when her water was not being retained properly... kinda flushed her out. Her brain swelled up which caused her symptoms to manifest itself into these things that happened. The Neurologists said it was temporary thing until her sodium level was restored and it was. Dr.s Krance and Khan (Abby's BMT docs) both had seen this before in other patients and it usually would not come back with the second, and last dose of Cytoxin. Just in case though, Abby received her second dose of Cytoxin in the PICU, where she was closely watched. It never came back thank God.

Abby is not doing to well as you all can imagine right now. She is very nauseous and crampy, and complains of tummy aches. They started her on a new tummy med, Ativan, which seems to be helping but makes her sleepy. She had her first round of Radiation this morning and that seemed to have went well although she complained of her respirator mask she had to wear as she left the unit. They drove her by ambulance to MD Anderson Cancer Center for her radiation and put her to sleep while this happened. She was back in her room within the hour. Radiation will be again tonight for three more days. Because they suspended her chemos until they could make sure the Cytoxin did not pull a repeat performance, Her last dose of ARA-C will be done today... only one of the two though so she will be done with the chemo. They will start some IV nutrition tomorrow because she has not eaten since Friday. Only takes small sips of coke or sprite. It's good to be back in our BMT room!!!!

Last thing, Suzanne was seem by the Methodist Hospital docs for her checkup on Friday and all is still set for her Bone Marrow harvest this Friday (Day 0). I will be pulling double shifts then with Abby as Suzanne recovers at Carmen's house. Keep those prayers coming!!! God bless. Bert,

I added new pictures and removed the old ones.

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Friday, December 14, 2001 at 07:40 AM (CST)

Sorry to all... my posts have been cut out in mid stream for some reason. Here is a repost attempt.

Dear family and friends,
The echocardiograms of Abby's heart showed essentially the same damage that she had shown in her post chemo echoes from February and August, which was a slight dilation (thinning of the walls) and that the left ventricle squeeze was not as vigorous. The cardiologists said that Abby is good for her Bone Marrow Transplant but did recommend some heart meds to help strengthen her heart. She didn't need to really take them but the transplant docs started her on them anyway. She might have to take these for a while. They are very cautious. Today, prior to the start of her chemo, they thought there might have been blood in her urine. They immediately took a urine specimen and did an echo of her bladder and kidneys. All was normal and the sample was clear... a false alarm. One of her chemoes, cytoxin, is very hard on the bladder so they take no chances. Suzanne thought that because she was wearing red pants, a red fiber or something fell in her urine. Who knows, but we were all thankful for the clear reading. Abby was worried over all the fuss but reluctantly consented to the echoes. She still tries to run the show... the best she can anyway. Mrs. Larkin, Abby's kindergarten teacher in VA asked me that today and yes she certainly does try to rule but she has been great through all the prelim testing. A real trooper and asks all the right questions!!

We completed our check in with MD Anderson yesterday. We will get her radiation there. We also had our consult with Dr. Krance, Abby's transplant physician. He was very blunt from the outset. This transplant hopefully will be a cure but he certainly could not guarantee it. This will be a 50/50 proposition and that is real hard to face. Abby has a very aggressive cancer and that means tough therapies and treatments to try to get it under control. Assuming all goes well with the transplant, she has a 50 percent chance for long term (over five years) survival. She has a 5-7 percent chance of dying from the treatment and roughly 45 percent chance of relapsing again. That would be devastating to go through all this and relapse so we will keep our cup half full and hope for a successful transplant and lifelong remission. We discussed all the side effects of her chemo and radiation and they are daunting, but we already had a general idea this would be difficult from our consults last year on Bone Marrow Transplants.

Abby was so excited to move into her hospital room, bless her heart. After her heart echoes, we moved into her room and Abby was excited about her new place on the BMT Unit. We had to start decorating the unit immediately. We had to all start immediately unpacking and decorating. I was there till late last night getting things set up. Today, Auntie Carmen brought her a fake (no live stuff in the room) Christmas tree and we decorated that and her windows. We also hung all her pictures up around the room walls from her VA friends, Madison, Caroline and Marrissa. Her chemo began at 5 this afternoon with the oral meds just starting to begin. What a pain. She was doing fine with penicillian, two heart meds, flucoconozole (anti-fungal, eye drops and her mouthwash, but when they brought in a suspension Cipro (of anthrax fame) she threw it up. After much consultation, they are giving her an IV version so that helps, Tomorrow she starts another chemo in addition to her ARA-C that she gets twice a day now. She will be sick but for now is showing no effects. We'll keep her occupied. She requested a song from her in room phone to the hospital kids radio show (they have a kids studio for all the in-patient kids) next to the library and family areas... really nice to be in a pediatric hospital. She loved when they played "Who let the Dogs out!" for her.

I am just now figuring out the internet connection for the hospital and here in the Ronald Mcdonald house so hopefully I can keep on going with these updates in a more timely fashion. God bless you all and take care...

Daddy Bert

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Wednesday, December 12, 2001 at 08:16 AM (CST)

Dear Family and Friends,
We received word that Abby's EKG is abnormal and she will need a complete cardiac workup to make sure she can handle the BMT. Something to do with her left atrium being the pacemaker instead of the right. The nurse I spoke to had limited info so we will get the full story from the cardiologist here today after her tests. They have the best heart doctors here at the medical district between Texas Children's, St. Luke's and Methodist hospitals. Because we could not get an out-patient appointment, we will be admitted today, a day early. This is kinda working out to Suzanne's liking anyway because she was superstitious about being admitted on the thirteenth. Abby is doing fine, in no distress and still smiling. She did not, however, want to read and color her transplant information book. Want's nothing to do with it for now
We are getting re-packed and set to move in. I moved in some stuff into the Ronald McDonald house last nig

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Saturday, December 08, 2001 at 09:09 PM (CST)

Dear Family and Friends,

We have arrived safe and sound in Houston and Auntie Carmen and Uncle Alfred are taking good care of Abby and us. We had a day to unwind from our trip before our first visit to Texas Children's Hospital. We have been busy with appointments ever since and have now settled to our last real weekend before going into the Hospital. Abby's Auntie Iris and her 7 year old cousin Carissa arrived from El Paso today to keep us all company and in good spirits. They all just left to see the Nutcracker ballet, which is wonderful for Abby. I am posting some new pictures from the recent days for you all as well.

Our appointment on the sixth ended up being a long day. We went into the Bone Marrow Transplant unit for a check-up, more blood draws from both Abby and Suzanne, and a tour of what soon will be our home, the Bone Marrow Transplant Unit.

This day was the beginning of a wide range of baseline checks and tests required prior to the transplant. That day we also had a complete (opthalmology) eye exam and a chest xray done. The next day, Abby had a radioactive dye put into her blood stream and then a blood sample was taken at the one, two, and four-hour mark to monitor her kidney filtering function. She sailed through all the tests fine and did real well.

We also got the results back from her blood tests and they showed improvement, believe it or not. Her ANC (infection fighting ability) was at 1680 from 900 before we left Virginia (above 500 is good in infection fighting ability). Her WBC (white blood count) rose from 3.7 to 4.1 which is low but good in looking at leukemia. Her Hemoglobin is holding at 9.9 (norm is 10.6-15.2). Her platelet count dropped a little but are still well within being normal at 175,000. She is still bouncing around and doing very well. We will go in on Monday for another Bone Marrow Aspiration to recheck her disease state in her Marrow. A miracle perhaps that she has nothing going on? We can only pray and hope and wish. She will also get EKG, echo and pulmunary function tests to check her heart on Monday We will also have a complete dental exam to do and we will either do that Monday or Tuesday. Dental checkups are required to rule out any potential source of infection prior to the transplant. On Wednesday she will have an all day neuropsychological test (fun day at school) to check and baseline her cognitive functions, including intellectual and academic screening. We are all slated to go in-patient on the 13th.

We looked at the Ronald Mcdonald House down the street and will try to get into there this week before we are admitted. Suzanne will have her marrow extracted on the 21st, the day of transplant, and will be out a couple of days. I will be whipped but have Carmen here to help me.

Our treatment plan as I know it today will go as follows. Abby will get High dose Ara-C for three days followed by two days of cyclophosphamide (chemos) for two days. On day five she will star her Total body radiation, twice a day for four days. The she will receive Suzanne's marrow. Engraftment occurs when her ANC registers 500 or better for three days in a row. We hope to see that within two weeks. She will have a Bone Marrow Aspiration to check her marrow on day 21 and 100. More to follow for sure including effects of Graft versus host symptoms which will occur. Hopefully those effects will be minor. I added a link to the hospital in our links section. Abby's attending physician will be Dr. Krance, one of the best in the world in pediatric transplants. We will have a comprehensive meeting with him on Tuesday to discuss all the treatment details. So we are in good hands and will trust in the Lord.

Please keep us in your prayers and God bless. Bert, Abby's Daddy

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Tuesday, December 04, 2001 at 04:42 AM (CST)

Today is the big travel day. Abby is excited and is still bouncing around, although she does get tired easily. We're going in to this with her certainly stronger, both mentally and physically. Yesterday, I checked out for "Temporary Additional Duties" assigned to Texas Children's Hospital and said bye for now to all my co-workers and extended family in the Navy. We finally got everything packed... and I say that guardedly because how do you pack in a week for a trip that will last 4-5 months, I'm just glad I didn't loose anything. Still kinda walking around stunned but we're getting there. Yesterday, I also shipped off six boxes of Abby's favorite toys, books, videos and stuff to Auntie Carmen. We still need Grandma and Grandpa to ship off two more after yesterday. They are all hunkered down here to watch and take care of our other extended family here at home (Lulu and Butch the boxers, four cats and a fish).

Abby had lots of visitor here lately and that has kept us busy as well. Her friends at Resource Bank stopped in to give us all best wishes and gifts for Christmas. Very nice folks. Her friends Madison, of course, and Marissa stopped by last night to play and Barbie had to go flying in her plane. Needless to say we finished packing at 10 p.m. Well, it's 6 a.m. now and I need to start rousting the troops! Talk to you all soon from Houston! Thanks for all your support and prayers. God bless, Bert

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Thursday, November 29, 2001 at 06:24 PM (CST)

Dear family and friends,

Today was a trying day. Abby had her central veneous catheter line placed back into her chest. It has two ports directly to her blood stream. She will need this during her chemo and transplant. She had one before and the same surgeon placed her new one in the same spot. After, it was just like old times with Abby helping to flush her lines with saline and heparin. Doctor Porea, her attending oncologist here, is trying to get as much done here to prep her for Houston. She also had an audiogram to baseline her hearing. We missed getting a echo of her heart and a renal scan but will do those in Houston at Texas Childrens Hospital (TCH). So she is all done here after more blood was given from her for further testing. Suzanne gave her blood yesterday.. testing of both of their blood seems to be going on continuously.

We are pretty much set now for our trip and are leaving on an "Angel Flight", which is a donated plane with a crew of Angels to fly us to Houston directly. What an awesome thing. We leave on the 4th of Dec. Abby's first appointment for the additional "work-ups" is on the 6th. She will be admitted on the 13th and that's when her chemo and radiation will start. Her transplant is scheduled to be on the 21st... or Day Zero as they say in the transplant world. We hope to get to Day 100 because that's when things usually stabilize to where she can be discharged to come back home. Long road to come for sure.

I want to thank everyone for their prayers, words of encouragement and support, but most of all, for your love. God willing, we will make it through all this. Last night we all went to a huge Christmas display in a nursery here. Abby has gone every year except the last because of her hospitalization. She remembers every mechanical animal and person it seems. She had a blast. We are looking at light displays tomorrow night and her friend is sleeping over on Saturday. She has lots of energy still and for that we are thankful. We have at least caught this early enough that she will go in strong. She is looking forward to being with her Auntie Carmen in Houston and going to the Butterfly Museum there. We will have some time before this starts so that is awesome. 100 days "locked down" in a ward seems like a such a long time right now.
God bless.

Bert (Daddy to Abby, our hero and brave Soldier!)

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Tuesday, November 27, 2001 at 02:25 PM (CST)

An email I hoped and prayed I would never have to write has come. Results from Abby's BMA yesterday are not good. She has 7-8% blasts in her marrow. Her CNS fluid and IV blood is clear for now. She has relapsed. We are getting set up right now to go to Texas Children's Hospital in Houston for a BMT with Mom as a 5/6 match donor. Leaving probably within the week and are now getting our stuff in order. This sucks. I'll try to keep in touch with all you on the list as we progress through this. Please keep us in your prayers.
Bert Ortiz - Dad to Abby (Age 6) Dx AML M2 15 Aug 00, RO 28 Sep 00, Completed chemo on 7 Jan 01. Relapsed 27 Nov 01 and on way for BMT.

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Monday, November 19, 2001

Dear Caringbridge Family:
The airing of the ABC/PBS special on EDMARC Hospice for Children (that features Abby as one of its kids) has been postponed until sometime in January. My understanding is that they are waiting to air it so it doesn't get lost in the Christmas specials and world news. I will let you know when I know. I am so sorry I can't give you a definite date.
Today after school, Abby & I are going to the Children's Museum of Portsmouth so Abby can have her picture taken with her art work for the local newspaper. This is the Making A Mark art exhibit that will be in the museum's gallery opening Dec. 1st.
Abby is slowly recovering from her bladder infection. She is still scheduled for a BMA at the PICU on November 26th. Please keep her in your prayers. Thank you.
Love,
Mommy Suzanne
PS May the peace of God touch each and everyone of us. Amen.

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Tuesday, November 13, 2001

Dear Caringbridge Family: (all of you kind folks are part of my family)
Just a quick note to let everyone know that the BMA (and blood test) that Abby had scheduled for today has been canceled due to a bladder infection that Abby developed over the weekend.
She is currently on antibiotics (containing a sulfur drug) for 10 days. Now her BMA is scheduled the morning of Nov. 26th. Please keep Abby in your prayers.
Also, I will let you know when the PBS/ABC special on EDMARC Hospice for Children (Abby is one of the 3 kids featured) is to be aired as soon as I know. It is supposed to air the week before Thanksgiving. Please consider taping it and not letting young children see all of it because one of the children dies. I believe they tape the funeral also. I am going to tape it and only show Abby the parts that I feel are OK for her to see.
On another note, Abby's painting that she submitted to the Texas Children's Hospital in Houston - Making A Mark Exhibit - is traveling to the Children's Museum of Portsmouth! The show will open on December 1st. Making A Mark is an exhibit of art by children whose lives have been touched by cancer. Abby is looking forward to her first art opening!
Take Care. We love you. We need you.
Love,
Mommy Suzanne

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Thursday, November 01, 2001 - NEW PHOTO

Dear Abby Allies:
Last night Abby enjoyed a fun Halloween with her friends. She was dressed as Tinkerbell. My parents, Bert & I watched in amazement as she ran with her friends to the neighbor's houses to trick-or-treat. As many of you remember, last Halloween Abby had just finifshed 5 days of Chemo. She finished her last Chemo on October 31st at around 12 noon. She was told if she didn't have a fever or throw-up, (which is very common) that she could go home at 3 PM to trick-or-treat. Well, Abby did it. We left Portsmouth Hospital around 3 PM. She was already in her costume (which was Truly Scrumptious from Chitty, Chitty Bang Bang).
We drove home, carved 3 pumpkins, put her in the jogging stroller (she was too weak to walk) and took her to about 4 houses when she asked to go home.
That Halloween, I couldn't help but be sad because I was so worried she wasn't going to live to celebrate another one. And now Abby is running around like all the other kids.
Praise God.
Love,
Mommy Suzanne

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Monday, October 29, 2001

Greetings:
On Sunday (10/28), our dear friend Martina ran in the Marine Corps Marathon for the Leukemia & Lymphoma Society's Team in Training program. She ran in honor of Abby and for all those suffering from blood-related cancers. The goal of the Team in Training program is to raise money to help find a cure for blood-related cancers.
Martina ran the whole Marine Corps Marathon in 4 hrs 37 minutes!! Also she raised over $4,300. She wrote and told me that she thought about Abby all through the race to keep her motivated. She even had stenciled "FOR ABBY" on the back of the Team in Training jersey that she wore.
She also wrote that at a luncheon for the Team in Training members, the day before the race, she found out that collectively, teams from all across the country who ran the Marine Corps Marathon raised more than $5 million for the Leukemia& Lymphoma Society!
She said she is so inspired and motivated, that she just might be crazy enough to do this again!
Thank you Martina and all your sponsors and fellow teammates. Thank you for giving us all hope that we will find a CURE, not just the hope of a lasting remission, but a CURE.
I can only imagine what a sacrifice it was for all the runners. It must have been chilling to run by the ruins of the section of the Pentagon that got blown up.

Tonight Abby and I prayed for our nation and for our mail carrier and all the other mail carriers and postal workers.
Abby asked God to put Guardian Angels around them so they won't get hurt.
Good Night and God bless.
Love,
Mommy Suzanne

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Saturday, October 27, 2001

Greetings:
Abby's blood test on Wednesday (10/24/01) was good! The best birthday gift ever.

Tonight Grandma B. and I took Abby to an old fashioned carnival (you buy coupons for the rides and the rides are lit up at night). Her favorite was the Ferris wheel. She kept saying , "I can't believe this is real. I can't believe I'm here." It is so great! She won 2 goldfish (now named Cosmos & Wanda from Nick-TV Fairly Oddparents), a blowup guitar, and a small stuffed dog she named Ferris. She said she wants to remember this night forever. I know Grandma B. and I will.
She is so joyful about the good times. If you hang around Abby, you too will feel that joy.
God Bless you.
Love,
Mommy Suzanne

PS Tomorrow (10/28 Sunday) one of our dear friends, Martina, is running in the Marine Corps Marathon for the Leukemia & Lymphoma Society's TEAM IN TRAINING program. I have copied two of her letters for further information. Please keep her in your prayers. May God's power and love fill her with the strength she needs. May guardian Angels protect her & her family tomorrow and always. GO, MARTINA, GO! WE LOVE YOU!
____________________________________________
LETTER 1 - June 11, 2001

Dear Friends & Neighbors:
I am writing you to ask for your support for a very important cause – fighting childhood leukemia. Leukemia kills more children between the ages 1-14 than any other disease and it is striking way too close to home.

As you may know, Andy and I lived in Fallen, Nevada for three years before moving to Virginia Beach. In the last two years, there have been 14 cases of childhood leukemia in Fallen, a staggering number for a small town of only 5,000 people. News of the epidemic has left me grieving for the stricken families and terrified beyond words for the health of my own children. Right now, thankfully, they are fine. Still, every bruise, every tummy ache, every fever, sends a chill of worry down my spine.

Unfortunately, friends of ours in Virginia, Bert and Suzanne Ortiz, know all too well about this fear. They have a precious little daughter, Abby, who is the same age as our oldest child. Last August, just months after she turned five, Abby was diagnosed with acute myeloid leukemia and started chemotherapy just three days later. Today she is doing very well but her battle is far from over.

Since I first heard about Abby's illness, I have been searching for a meaningful way to honor this brave little princess. So last month, I joined the Leukemia & Lymphoma Society's TEAM IN TRAINING program to raise money to help find a cure for blood-related cancers.

As a TEAM member, I have two goals to accomplish. The first is a bit of a challenge. I will run the Marine Corps Marathon in Washington, DC, on October 28. It will be my first marathon. The second goal, and more of a challenge, is to raise $2,620 for the Leukemia & Lymphoma Society ($100 for each of the 26.2 miles I will run). I have been training for the marathon with a volunteer running coach and am confident that I will cross the finish line, even if its not in record time!

As I run the 26.2 mile course on October 28th, I'll be inspired by the following thought; this challenge is nothing compared to the challenges faced by Abby and the fourteen children in Fallon fighting for their lives.

Thank you in advance for your support and for your friendship.

Sincerely,
Martina
mleinz@worldnet.att.net
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LETTER 2 - 10/22/01
Dear Friends & Family:

Hope you are all doing well. I am busy carbo-loading for the Marine Corps Marathon this Sunday and Andy and the girls are having a good time watching me gorge!

Thanks again for all of your support for both the Leukemia Society and my goal of running the marathon. To date, thanks to your generous contributions, I have raised over $4,300 for the fight against cancer. The Leukemia & Lymphoma Society is profoundly grateful. Fundraising for many non-profits will be a huge challenge in the days and months ahead since the citizens of our great county are so generously giving to the various September 11 funds. While this is noble and necessary, I urge you all to continue to give to your other favorite charities this year as well. They have never needed you more.

As for my training, I hit a snag on a ten-mile group run on July 28 that caused me to miss a month of running. I tripped on a tree root and crashed down hard on my right knee. What a klutz! I literally ate dirt! Anyway, just days later, we moved to and I exacerbated the injury by carrying boxes up and down stairs for days on end. To make a long story short, I ended up with full-blown bursitis in my knee. Man, did I feel old! The good news is that after not running for a month, I ran the Inaugural Rock-n-Roll Half Marathon in Virginia
Beach Labor Day weekend, albeit with a knee brace, and I've been on track (no pun intended) ever since.

The Marine Corps Marathon will undoubtedly be an inspiring race this year. The course will take us past the national monuments and past the Pentagon where the grand American flag is flying high above the section damaged by Bin Laden's madmen. I'll be waving a flag too as I cross the finish line at the Iwo Jima Memorial and I'll be waving it high for Abby Ortiz and the children of Fallon who are so bravely fighting Leukemia, for the heroic firefighters, police officers and EMS workers in New York and DC, and for the valiant men and women of our armed forces who are fighting for all of us in Afghanistan.

If you aren't doing anything on Sunday, I'd sure love to see your smiling faces on the sidelines. DC is a great city and there's never been a better time to visit. There aren't many tourists coming to the Capital these days.

Hugs and best wishes,
Martina
mleinz@worldnet.att.net

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Monday, October 22, 2001 PLEASE NOTE: NEW PHOTO

Greetings:
This Wednesday (10/24/01) is Abby's monthly blood test. It is on my birthday so it has just got to be good news! That would be the BEST gift of all. Abby's next BMA is scheduled for November 13th. Of course, she goes under anesthesia for that. We will keep you posted as always as to Abby's progress.
Grandma & Grandpa Barker are visiting and are staying at Aunt Karen & Uncle Roger's house until at least after Thanksgiving. They are busy being the special grandparents that they are to Abby. Aunt Karen & Uncle Roger are safe and sound in FL.
Abby & I went to see the musical "Phantom" with Grandma & Grandpa Barker last weekend. It was awesome! The music was fantastic. Abby thought it was humorous when the phantom (who was dying of a bullet wound) kept getting up and singing time and time again. She said to me, "Every time I thought he went to heaven, he would get up and start singing again!"
Tonight we went to the EDMARC Halloween party put on by the Portsmouth Rotary Club. What fun! Abby was dressed as Lucy in the Vitameatavegamin episode. She had the Vitameatavegamin bottle, a spoon, and recited the speech ("Are you run down, listless? Do you poop out at parties? Are you unpopular?")! I think there is a little bit of Lucy Ball in our little Abby.
I want to thank every one for all your love, support and prayers. From our relatives to our friends at MACS (Make A Child Smile), Smile Quilts, EDMARC, school, Miss Pauline's School of Dance, to all our neighbors a BIG thank you for the unconditional love and caring you send our way. I wish you were there to see how happy you make Abby when you remember her. I apologize for not being able to thank each and every one of you each time you do something sweet. I hope knowing that you have helped Abby through the darkest times of her life and now as she adjusts to life outside the hospital that you are helping still. These are good times for Abby but they are also stressful times. And as her Mom I see her struggle a lot. But she is strong in spirit and will not be broken.
God Bless you.
Love Mommy Suzanne
Abby Dx AML-M2 8/15/00
Remission 9/28/00
Chemo completed 1/7/01

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Tuesday, October 16, 2001

Greetings:
Abby has lost a second tooth! She now has a "window" for her tongue on her bottom jaw. It is so nice to deal with normal childhood events. She still is wondering about the "TUBE" fairy. And if she will visit when Abby loses the tubes in her ears.
Abby had a cold that went on for 3 weeks and she saw a doctor and was put on an antibiotic. Boy was she doing better in a couple of days. It even cleared up her mild case of conjunctivitis in her right eye. Of course, Bert & I were nervous when Abby got her recent eye infection. It was in the same eye that lead to her correct diagnosis.
Abby's grandparents from CT are visiting. She couldn't be happier. It is good timing because it is helping her cope with her Aunt Karen and Uncle Roger moving to FL.
Tonight we are all going to dinner to celebrate Uncle Roger's and my birthday (mine isn't until the 24th).
Take care everyone and call on your guardian angels to protect you from harm. Abby reminds me to trust them.
Love,
Mommy Suzanne
Abby Dx AML-M2 8/15/00
Remission 9/28/00
Chemo completed 1/7/01

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Monday, October 01, 2001

Greetings:
There is a NEW photo of Abby taken on her school picture day. She is holding her Honey Moon doll (Dick Tracy Jr. and the Moon Maiden's daughter). For some reason she is extremely interested in that family!
Take Care.
Love Always,
Mommy Suzanne

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Thursday, September 27, 2001

Dear Family and Friends of abbyallies:
Abby had her monthly blood test yesterday (9/26/01). It is normal. HURRAH! Her red count has come back up after a slight drop last month. She had her check-up with Dr. Porea and everything checks out okay. Abby still has tubes in her ears. She was asking Dr. Porea if there was a "tube fairy". I think there actually is one at our house!
Tomorrow is picture day at school. If any of you read Junie B. Jones books (by Barbara Park) you'll understand when I say Abby is going to visit the "cheese man".
This will be her first studio portrait in more than one year. We were waiting for her hair to come in and it did. Beautiful, thick and curly. She deserves it.
Thank you for your continued prayers. Please continue to pray that Abby remains in remission and that the damage to her heart from the chemo will be completely healed.
God Bless you and keep you out of harm's way.
Love,
Mommy Suzanne

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Sunday, September 16, 2001 - NEW PHOTOS

Dear Friends, Family and All of Abby's Allies:
Abby is doing well. She likes school and is enjoying her new friends. Thank you for your prayers and unwavering support.
I'd like to take this opportunity to share a poem with you. For those who have lost a loved one. I did not write it. I wish I knew who did.

Do not stand at my grave and weep
I am not there; I do not sleep.
I am a thousand winds that blow.
I am a diamond glint on snow.
I am the sunlight on ripened grain.
I am the gentle autumn rain.
When you wake in the morning hush;
I am the swift uplifting rush
of quiet birds in circling flight.
I am the soft starlight at night.
Do not stand at my grave and cry.
I am not there; I did not die.

God Bless you all and remember to be kind to yourself too!
Love,
Abby's Mommy Suzanne

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Sunday, September 09, 2001

Greetings:
On Tuesday (9/4/01), Abby began Kindergarten!! Bert & I watched in awe as she climbed those big, steep stairs onto that big yellow bus. We just didn't know if she'd live long enough to go to school. Abby is a miracle. God wants her here still for whatever reason.
Whew! Thank you God. God Bless all of you for your prayers and support. We couldn't have done it without your outpouring of prayers and the love you sent Abby and our family.
Love,
Suzanne (Honored to be Abby's Mommy)

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Wednesday, August 29, 2001

Dear Friends:
Abby has been through her 6 month post chemo testing and she is doing very well!
Both her spinal fluid and bone marrow were clear -- no cancer.
Her blood test is fine and the readings are up for the platelets and ANC -- GREAT.
Abby had an MRI and the small spot in her brain is the same as it has been from the beginning and so they have concluded that it is calcification that is unique to Abby and that it is fine and does not need further followup.
Abby's heart is about the same, but she swims and is getting an increasing amount of exercise and so they are going to followup with that in a year.
So Abby will have routine followup for the AML -- with blood tests and BMA's -- but it is looking VERY GOOD -- especially since the first 6 months were the most critical.
Needless to say we are overjoyed and want to thank you for all of your support and prayers over this past year+++.
God Bless you,
Auntie Karen

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Tuesday, August 07, 2001 - NEW PHOTO!

Greetings from Connecticut!
Aunt Karen, Abby and I are visiting our beloved family and friends. Abby was thrilled to meet Amanda (her cousin once removed--got that? Abby's cousin Adam and his wife Missy's 10 month old daughter). Abby got to play with her second cousins Briggita and Aran (Abby's Mommy's cousin Julie's and her husband Paul's kids). Abby's cousin Andy came over and showed her his new car. It is red and it is shiny and it is fun!
Abby got to visit "Aunt" Bev (Aunt Karen's best friend) and "Uncle" Jack and play with Bev's old Ginny dolls. We visited my best friend "Aunt" Jennifer and her husband "Uncle" Brad, and their beautiful girls Julia and Alexandra. Abby loves those girls dearly. We got to visit our Uncle Walt. Uncle Walt and Aunt Barbara never wavered in their steadfast support while Abby was going through all the terrible medical stuff.
We stayed at Abby's Grandma and Grandpa B's house which is Abby favorite place to visit in the whole world. And Abby got to visit Grandma and Grandpa B's neighbors. They have all been so thoughtful and concerned during Abby's illness. There is Leslie's family including of course the doggies. And Sheila's family with 3 beautiful kids to play with and one on the way. And Denise's family with Sean who is fun, fun, fun.
Tomorrow it is more fun with a visit to Danielle and Dane, my dear friend Gail's and her husband John's kids. They are the family that rallied for Abby and with the help of the primary school and the Catechism class sent her 102 Dalmation. Yes, 102!!! What joy she had opening the boxes that arrived almost weekly. Abby's wonderful friends on the Make A Child Smile (MACS) helped to complete the collection.

While we are here in CT, there are other visits still to come. Abby can't wait to hug and kiss her Aunt Ethel (Grandpa B's sister) and her husband Uncle Cliff. They have always been close to our hearts even though we live so far apart.
And Abby can't wait to play with her other second cousin's Nick and Kelsey (Abby's mom's cousin Dan and his wife Judi's two kids). And also see Aunt Margaret and Uncle Richie.
We are so thrilled to be out and about visiting the family and friends that we have been unable to visit for so long. Abby really feels a strong sense of belonging. All of the gifts, cards, email, prayers and love has meant a great deal to Abby and to Bert and I. I know that your prayers and love have pulled Abby through her most critical period at Christmas time. We love you and we need you.
Love, Mommy Suzanne (Honored to be Abby's Mom)
PS Hello to Abby's shipmates and friends from the Wisconsin (now home for good in Portsmouth). We miss you and send our thanks and our love. Hugs and kisses to Sheila and Gene. We hope Sheila is on the mend.

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NEW PHOTO! July 14, 2001

THIS IS A COPY OF A LETTER BERT (ABBY'S DAD) WROTE AND POSTED ON THE AML DIGEST WEBSITE.

Hi everyone,
I've been lurking for the past months, apprehensively wrapped up in post chemo worries for Abby, my daughter. I have been following everyone's stories and you are always in my thoughts and prayers. You are all true heroes. I have some great news to share with you and for those that are facing similar situations and decisions.
Abby, age 6 now, completed her chemo (five rounds centering around High Dose ARA C) on 7 January of this year. We just received her 6 month blood results and they were great: Hg 11.4, platelets 213, and ANC of 1250. We now can stop her last med (septra). She has grown 1 1/2 inches and has gained 8 pounds and looks awesome. She had her central lines removed two months ago and is enjoying swimming like a fish every day in her auntie's pool. Her hair looks like a short haircut now. Leukemia was something that happened when she was five and she is just not talking about that anymore. "I'm six now and five was a bad year" in her words. No mo' chemo.
She had FAB M2, Central Nervous System (CNS) involvement with no chromosomal abnormalities and no sibling to match. Her mother is a five of six hla match and other testing at Univ. of Cincinnati has determined her compatibility as a donor to Abby. We decided against a transplant at this time with much trepidation. Tough road choosing which way to go after getting opinions from two opposing points of view from the two pediatric oncology groups. But things are great and with god's grace, it will continue. Every month the fear and worry are great for both Mom and I as we await blood results. We wonder if we will get bad news although she is doing wonderfully. If she were to relapse, a Bone Marrow Transplant (BMA) would have to be done immediately. But Mom's hla match, in a way, is a comfort to have in the hip pocket. Still every bruise and headache gets met with scrutiny and worry. But I have to say, things have lessened some in the worry arena except around test time. She has a monthly blood test and every 3 months a BMA and spinal puncture.
Everyone, I love you all and wish you the best through your every treatment day. Hopefully I can continue to help in a small way. After a post in March, I applied for tenure to the CARRA program at NCI. I await their decision and the opportunity to help in that capacity. Now it's platelet donations for me and the calls come in all the time for me to "muster over at the center" for the draws. My best to all.
God Bless you.
Bert (Dad to Abby, age 6. Dx AML M2 8/15/00; in remission since 9/28/00. Completed chemo 1/7/01 and loving life!!!

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NEW PHOTO! - Monday, July 02, 2001

Dear Caring Friends and Family,
Just a short note to give you an update. Abby continues to do well. She is continuing with her transition from hospital life to normal life. She's lost one year due to her illness and is a little at a loss at times. Nothing has changed to her but other kids have matured in ways no child in a hospital bed ever could have. She has had a hard time emerging from this one year "time warp" to life as a six year old. Some nights are teary ones. She continues to adjust slowly. When school starts, she will be able in some ways to have a new start.
She had a wonderful 6th birthday party. She had old friends and new friends there. Everyone was so sweet. She had ponies and a huge castle maze that the kids could crawl through. And God smiled down on her and kept the big thunder storms stalled out in North Carolina.
At the bottom of this page is a link to an online quilt that was especially made for Abby. Please if you get a chance, visit it. It is so beautiful.
Take Care my dear friends and family. We need you.
Love,
Suzanne (Honored to be Abby's Mom)

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NEW PHOTO - Tuesday, June 19, 2001

Dear Friends and Family:
I wanted to tell you that since Abby's central line came out a couple of weeks ago, she has been swimming again. She had her blood test on 6/11 and the 5 month results are great!
Her birthday was 6/14 and she turned 6 years old! She had a great time with her friends and family at her birthday party. She had ponies and a castle maze. And best of all, she left being 5 behind her which she says was a very hard year.

The weekend of June 8th (before her birthday) we were guests of the Yorktown Rotary Club. We were treated like royalty. The fun week end included our stay at a hotel on the beach, a wonderful picnic (served with love and a new friend Bonnie for Abby), a fishing trip (the kids caught the most), a parents' night out (kids went to visit our new friends houses and the parents were treated to dinner at a seafood restaurant), and for our family a guided tour of the Va Air and Space Museum by Warren ("the smartest man on earth" quote by Abby). The trip ended with our fileted fish ready to go home with us in a cooler of ice and tickets to Busch Gardens! I don't understand why they didn't filet the fish I caught, after all it seemed to be the biggest by far even though it was an OYSTER TOAD!
The compassion and support we felt that week end was incredible. God does have angels working here on Earth.
Love to you. Thank you for your prayers, birthday gifts, cards, E-mails and continued support. Without you and your prayers I may have lost my Abby. Without you and God I am lost.
Love Always,
Mommy Suzanne

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Thursday, May 31, 2001 Evening time

On Tuesday, May 29th, little Abby had surgery to remove her central line. All went extremely well. As you probably recall, a central line (Hickman dual venous catheter) is a tiny tube stitched into a vein in her heart that runs through a small hole in her chest and splits into 2 capped tubes outside. They use these tubes for Chemo, various infusions of medicine, and for blood and platelet transfusions. Removing the line is a step forward.

She still can't get her small bandage wet. It may be healed enough to come off by Tuesday. She will be able to swim. She will be able to lay down in the tub. She will have 30 minutes freed up every night, time her Daddy would flush her lines. Now with this 30 minutes, her Daddy is reading her ALice in Wonderland and Alice Through the Looking Glass. Instead of every other night a bath, bandage change, valves change and lines flushed, she gets the bath and Abby and Mommy will use the time for fun things...everything from painting toes nails to making paper hummingbirds.

Abby's fascination with birds, especially hummingbirds, is huge. During the cold, lonely days of winter when Abby was sick and lonely, we kept a bird feeder (always stocked) outside on our deck. We spent quite a bit of time identifying the different birds that came to our bird feeder. It brought joy to a dismal period. And now we have become bird watchers!

Thank you to everyone for the continued support, prayers and love. We feel your love. We know you are out there. You have stayed in our hearts throughout these tough times. We haven't always returned your calls or Emails and haven't spoken to some of you for a while. Know we love and appreciate you. Thank you from the bottom of our hearts.
Love, Mommy Suzanne, Daddy Bert and our little Abby

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Wednesday, May 23, 2001

See photo of Madame Abby Butterfly!

PLEASE NOTE:
The Appointment for Abby's central line removal has been rescheduled to Tuesday, May 29. There is nothing wrong with Abby that caused the date change. It was a scheduling problem. We will keep you posted.

Tuesday, May 22, 2001
Greetings:
Tomorrow Abby is scheduled to have her central line removed. The surgery is at 8:30 AM. Please keep her in your prayers. This last week end was one of the busiest other than Special Love camp (Mother's day week end).
We went to Abby's friend Alex's birthday party. She played with friends that she hadn't seen since Aug. when she was diagnosed. She ran around with her friends Alex, Marisa, Marie and little Miguel. She was full of energy and laughter. What beauty there is in watching the joy of a child who is running barefoot in the grass.

We then went to see the movie Shrek. It is really good and has a good message. Shrek is slovenly and eats eyeballs etc. but deep down he is gentle and kind. Abby loved it and so did Bert & I.
On Sunday we went to church. Abby picked her clothes that morning. Purple, Purple, Purple. I was quite taken back when the sermon was on Lydia and the purple cloth. They gave the children strips of purple cloth to take home so they could remember the story of Lydia.
That afternoon we went to an Edmarc picnic in Newport News. Auntie Karen, Uncle Roger, Dad, Abby and I had a great time. The highlight of the picnic was Belly Button the clown. She did face painting and balloon sculpture. She transformed Abby into none other than a Dalmation puppy!! And, of course, I was painted to be her matching mommy dog. She also had a black tea cup poodle ballon dog made just for her, leash and all.
The Newport News police and fire department were there as required by law but I am here to tell you they were wonderful. They played with the children, let them blare sirens, sit on police motor cycles, look inside the police cars and fire engines, and gave out gold sticker junior deputy badges. A therapy dog who looked like Carl's twin was there too. Her name was Roxie and she was with Abby a lot.
This week end has been good. We thank God for the time we have with Abby. We still worry but I am told that is normal. We are nervous about tomorrow but feel God's closeness. I am beginning to believe Abby may stay with us.
Love to you and your families. Please don't forget to hug your loved ones today. And many,many hugs for the children in your life.
Love,
Mommy Suzanne

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NEW PHOTO!!

Just living is not enough, said the Butterfly.
One must have sunshine, freedom, and a little flower.
- Hans Christian Anderson

A beautiful quote sent to me by my dear friend Jackie. Thank you Jackie.
The rest of this entry is the same as 5/14/01.
Hello:
On Monday, 5/7/01, Abby had her first BMA and lumbar puncture since she finished Chemo in January of this year. Great News! Abby has less than 2% blasts which is EXCELLENT in the spinal fluid and the bone marrow. Also, the bone marrow is starting to come back on its own. Her hemoglobin count is still below normal, but well above the transfusion level. This is all such wonderful news. The echogram of her heart still shows some damage from the chemo but not serious enough to need medication at this time.
Bert, Abby, and I went to a camp called Special Love with 12 other families last Mother Day's weekend. It is located in the Shenandoah Mountains of Virginia. Such beautiful country. It was awesome!
Abby laughed and played with the other children. She even went off with the staff on nature walks, craft classes, and outdoor activities. She didn't seem to be experiencing the debilitating separation anxiety she usually does. Of course, the staff was outstanding and fun to be around. She also spent a great deal of the time collecting, naming and re-releasing caterpillars. Yes, Capterpillars!!
The best Mother's Day gift this year was to still have little Abby with me. I am honored to be her mother. She is my sunshine and the love of my life. I hope you Mom's had a great Mother's Day too!!
Bye for now. Take care and lots of love. God Bless every one of you.
Love,
Abby's Mommy (Suzanne)

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5-4-01 NOTE: NEW PHOTO

Greetings:

Thank you everyone for the continued support. On Monday, 5/7/01, Abby will be going in to have her first BMA since she finished Chemo. Bert & I are so anxious. It's hard to hide it from Abby. She will also have her heart rechecked. Her heart has some damage from the chemo which may or may not improve.

It touches my heart that so many people would take time to say a prayer or send Abby a card or gift as a reminder that she is not forgotten. You are angels. I will let you know about Abby's tests as soon as we get the final results. God Bless everyone of you. Love, Suzanne

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Monday, February 19, 2001 at 08:57 AM (CST)

I have GREAT NEWS to share.

Abby’s post-chemotherapy bone marrow aspiration and spinal fluid test results show that she remains in remission and leukemia free!! We are, as you can imagine, elated.

As most of you are already aware, Abby completed her last round of chemotherapy on the 7th of January. She went in on the 14th of February for this follow-on testing of her marrow and spinal fluid and an additional CT scan of her head and body to ensure no relapse or secondary cancers had emerged. Preliminary results revealed that Abby was producing normal marrow and blood. The final pathologists report two days later confirmed that she remains in remission from her AML. Praise God!

The CT scan showed complete improvement in her lungs. However, the 3mm spot on her brain, noted on a previous CT scan looking for infectious pockets, remained. It occurs on only two “cuts” of the scan so it is a very small area. The Docs and radiologists were at a loss to explain this “aberration”. It remains stable with no growth , diminishment or movement. It is harder to detect on MRI’s and, in fact, was not even noted on her initial MRI in August until it was reviewed again after the CT scan picked it up. It is not associated with her leukemia. After consulting with a neurosurgeon, it was determined that it is not a tumor, cyst or infectious pocket. It could be a mass of blood vessels unique to Abby. If it is, it is surely associated with her speech center since she is so talkative!!! It is deep in the left lobe so going in to find out is out of the question. Since she displays no outward signs that this is affecting her, the experts think it is nothing to worry about although it is puzzling. We have asked for the film to be sent out for a second opinion and a CT scan will be performed again in six months. We hope and pray that it is nothing to worry about. We’re optimistic that it is nothing and has probably been with Abby her entire life. If we never looked, we would have never found it I suppose.

Abby will have her blood drawn once a month and go in once a quarter for a bone marrow check for at least another year and a half to monitor her for relapse. She still has her central venous catheter in her and we look forward to when it is removed during her next bone marrow check. The reason why it is still part of her is because of potential for a relapse. Studies show that if you relapse from AML, you will do so within the first three months although after that we are still not out of the woods because it could happen at any time. If Abby manages to not relapse for five years, she will be considered cured. She will continue to be checked beyond that point, however, until she is 24 years of age. If relapse occurs at any time, we will be off to Texas for a Bone Marrow Transplant with Suzanne as the donor. So we still deal with this horrible disease.

For now, we are ecstatic and enjoy our little girl every day. We are able to expose her more and more to things we often take for granted, such as the outdoors, malls, movies and little friends. Make-a-Wish is sending us to Disney World on the 4th of March for a week so we are all excited. None as excited as Abby though. It is her most favorite spot on this Earth!! Life is finally returning to a normal pace. With God’s grace, it stays this way. Thank you all for all the wonderful support and strength you have given Suzanne, Abby and me during this fight.

Love, Bert (Daddy to Abby)

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Thursday, February 01, 2001 at 07:26 AM (CST)

I want to share with you that the Deparment of Defense Marrow Donor Program is having a Justin Thatcher Memorial Bone Marrow Drive on February 14th in Virginia at NAB Little Creek, Rockwell Hall, from 0730-1400. Please help by having your blood drawn so it can be typed and become part of the National Registry. It is free to all military personnel and their dependents, as well as civil service and reservists. Thank you so much.

There are so many children who need to have a bone marrow transplant and need a match. It could be you! Please be tested if you never have been and are over 18 years old. Someone's life depends on it.

Please continue to pray for the Thatcher family and friends and, of course, Angel Justin who looks down on us with love and compassion.

Greetings:

Abby is doing pretty well right now. She went to have a red blood transfusion today and it took almost all day. She has to have Platelets this Friday. The good news is that it looks like she is able to go off some of her medicines. That is going to help her to feel a lot better.

She still is not back to normal health and since she won't be having the neupogen (that boosts her white blood count) it is possible that she will drop back to being neutropenic again. Doctor Porea will track her blood counts for a while. On the 14th of February, she is going in to the hospital for a bunch of tests while she is under anesthesia. The tests include a BMA and lumbar puncture (to make sure there is no leukemia lurking in her bone marrow or spinal fluid). Also a CATSCAN and MRI to check that the lesion on her brain and on her lung is gone. The doctors hypothosize the lesions may have been pockets of a fungal infection. Without doing a biopsy (no thank you if not necessary) we may never know other than "the foot prints in the snow" so to speak.

Thank you for your love and support for Abby and my family over these many difficult months. As Bert says, "It's the 9th inning, and we are almost home!" But we still are scared to death she could relapse. Please continue with your prayers.

Take Care and Love,

Mommy Suzanne

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Saturday, January 27, 2001 at 02:48 PM (CST)

1/24/01 Wednesday
Hello Everyone,
Abby was interviewed today by a local TV reporter (Catherine Barret) from Channel 13(WVEC) Nightly News Health Watch. Our family (Grandmother Ortiz, Grandpa and Grandmother Barker, Aunt Karen and of course proud Mom Suzanne) all watched them tape the whole piece. They were doing a story about the Red Cross shortage of platelets.

They interviewed some platelet donors at the Norfolk Red Cross and then interviewed our little Abby, the recipient of platelets. We watched the whole taping and it was a wonderful interview. Catherine Barret did a awesome job. Abby ran the show.

Abby said, "People who donate platelets for sick children are Sweet People." And sweet people you truly are. Thank you.

Abby's neutrophil count is increasing and that is great. Unfortunately, it is artificially boosted because of the GCS (a medication that stimulates the neotrophil count, but hopefully her own body will kick in soon. We are planning to go in on Friday for red blood and platelets. Grandmother Ortiz has to leave tomorrow and return home to El Paso, Texas. We love her and will really miss her. She is such a love. Grandfather and Grandmother Barker are going to accompany Abby and I to the hospital to get a platelet and possible red blood transfusion. They are leaving Saturday morning for Florida. They are going to vacation there with Aunt Dot (my mother's sister) for a while.

Bye for Now,
Love, Mom Suzanne

1/22/01 Monday
Dear Friends,
Abby had a great day. Her Grandma Ortiz is her from El Paso Texas and Grandma and Grandpa Barker arrived from Connecticut. We all had dinner over at Sue and Bert's with Abby as our hostess! It was a joyful occasion with pasteles and New Year's hats, and an end of Chemo party that at the last minute Abby decided we should have her 5 1/2 year old party. We all sang over Happy Birthday over Grandmother Ortiz's delicious cake. Abby got really tired, but she had a great time told us all kinds of stories during dinner.

What a wonderful welcome change from her daily struggle for survival!!! She is quite a little girl and we are grateful and blessed for each day with her. Can you believe that throught all of this --Abby has grown 2 inches taller? It is amazing to me that anyone could grow in the midst of all of this. So we are all very happy that we could all be together and celebrate. Tomorrow, everyone will go over to Aunt Karen's and Uncle Roger's for dinner. A change of scenery for Abby. Abby's levels are beginning to rise, but very slowly and she is still quite neutropenic, so everyone is being extremely careful.

I hope that you are well and avoiding the winter flu.

Love Aunt Karen (Abby's Aunt and Godmother)

1/20/01 Saturday
Hello Friends,
Tonight Abby is at the hospital getting platelets, her count was very low. Abby continues to be more energetic, but is still neutropenic. We all pray tht her immune system will hurry up and kick in, so she will be protected from common germs.

1/19/01 Friday
Some really good news! Abby had a really good day today and she had a lot of energy! She even went for a walk! YEAH ABBY!!!!!

Thanks for your continuing prayers, good thoughts and wishes!!! She still needs you all with her, but it is great to report happiness!!!!!

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Wednesday, January 17, 2001 at 12:43 AM (CST) Please check out the Make-A-Child-Smile Website. Abby is the featured child for the month of January. There is a link to the website on the bottom of this page.

Dear Friends,
Abby's Mom (Suzanne) and Dad (Bert) are working really hard with the doctors to try to get her potassium (K) level up. They are not having very good luck with it. Abby's level remains too low for the needed treatment for the fungal infection. Mom Suzanne went out on a fact finding mission today to ask pharmacists for information about how to get the K into her. She found one pharmacist with some very helpful ideas. They are trying different thinks and hope that something will work. Otherwise, Abby has to go back into the hospital (PICU) and have a feeding tube put back in. The reason that it is so important that she tolerate the K is that the Amphiterrasin wipes out the potassium and it can affect her heart. Abby throws up the K and cries because she can't help it. She is being brave and trying so hard but it just comes up again. She's been through so much that the doctors as well as Mom and Dad are really hoping not to have to put the feeding tube back in. They are hoping to find a way to get the K into her and have it stay there. Abby must get a certain amount of the Amphitarrisin (a 4 hour IV drip for a calculated number of treatments) into her. It is crucial because if she were to ever have a bone marrow transplant and the fungal infection which they are 99% sure that she has(d), is dormant and not gone, it could re-emerge and cause death. So the struggle goes on. So please continue to hold Abby and her folks in your prayers. Thank you. Love, Abby's Auntie Karen

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Wednesday, January 17, 2001 at 12:43 AM (CST) Please check out the Make-A-Child-Smile Website. Abby is the featured child for the month of January. There is a link to the website on the bottom of this page.

Dear Friends,
Abby's Mom (Suzanne) and Dad (Bert) are working really hard with the doctors to try to get her potassium (K) level up. They are not having very good luck with it. Abby's level remains too low for the needed treatment for the fungal infection. Mom Suzanne went out on a fact finding mission today to ask pharmacists for information about how to get the K into her. She found one pharmacist with some very helpful ideas. They are trying different thinks and hope that something will work. Otherwise, Abby has to go back into the hospital (PICU) and have a feeding tube put back in. The reason that it is so important that she tolerate the K is that the Amphiterrasin wipes out the potassium and it can affect her heart. Abby throws up the K and cries because she can't help it. She is being brave and trying so hard but it just comes up again. She's been through so much that the doctors as well as Mom and Dad are really hoping not to have to put the feeding tube back in. They are hoping to find a way to get the K into her and have it stay there. Abby must get a certain amount of the Amphitarrisin (a 4 hour IV drip for a calculated number of treatments) into her. It is crucial because if she were to ever have a bone marrow transplant and the fungal infection which they are 99% sure that she has(d), is dormant and not gone, it could re-emerge and cause death. So the struggle goes on. So please continue to hold Abby and her folks in your prayers. Thank you. Love, Abby's Auntie Karen

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Friday, January 05, 2001 at 08:46 AM NOTE: Abby is featured for the month of January on Make-A-Child-Smile. On the bottom of the screen is a link to this wonderful web site.

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Friday, January 05, 2001 at 08:12 AM (CST)

I wanted to add Karen's email from yesterday because I thought it was something that needed to be added to the history. -Bert

Hello Friends and Relatives,

Sue and Bert have done a couple of updates on the caring bridge while I was away and expect that they will continue to do some.

Please copy and add this address to your favorites since they do such a great job of updating the caring bridge and you can get more accurate info from there when they do update it:

http://www.caringbridge.com/va/abbyallies

Today Abby was able to leave the hospital for 6 hours on a pass to go home to open some Christmas gifts, get a Happy Meal and have a tubby. The simple pleasures of life!!! Just for those of you who are their neighbors. That was not a crazy lady sitting on the porch, looking in the Ortiz window and mumbling. Well maybe it was a crazy lady, but it was me -- I have laryngitis and tonsilitis and Sue and Bert invited me to come see Abby open her gifts. I watched from the porch and am afraid that I couldn't resist talking to Abby through the window while she was opening her gifts. It sounded like mumbling because I don't have much of a voice left. The doctor told me I might be contagious and so I didn't want to expose her, but really wanted to see her on this happy occassion!!!! And she was thrilled to be home and spend time with her dogs and her folks and open gifts. So many people sent her gifts and her folks talked to Santa a lot this year and I think she got everything on her list and then some!!! Yeah Abby!!! Thank you to all of you who have been there right with her through this very tough time.

Everyday is a bonus and Abby looked so much better today than she has for a long time. She started walking again once she got into her house -- for the first time in almost a month.

Tomorrow Abby begins her chemo therapy with a spinal chemo. They are planning to also remove her ear tubes and replace them because her ears are filled with fluid. They simply cannot risk infection of any kind with her upcoming chemo. She and her family continue to need your prayers during these next weeks and even months as she has her last round of chemo in this fragile condition. Abby is a fighter, and we thank God for that.

It is a miracle that she pulled through this last bout of septic shock caused by the strep and the fungal infections. We continue to hope and pray that this chemo will be without complications and that she will be able to remail free from infection. They will be taking extra precautions during the recovery time at home following the chemotherapy and try to boost her immune system to decrease the amount of time that her body is neutropenic.

As a minister I have seen a lot and waited through many illnesses and deaths with families, and have been through many things with my own family. This, however, has been one of the most gutwrenching experiences of my life, and my husband's too -- so I cannot even begin to imagine what it must be like for Sue and Bert and most of all for Abby.

Sometimes people preach to me about faith and turning it all over to God. It doesn't happen very fequently, but it really tires me out when people do that. It makes me wonder -- what the heck are you thinking? Sometimes tears just flow -- and it has nothing to do with faith or not faith. It comes from our humanness. I feel that God has been in the midst of this entire experience --through and through -- I have never felt that God has abandoned us. Dealing with an illness like this as a family member is not about giving up on God, or God giving up on us, or turning it all over to God, just because there are moments of weakness and saddness. We have responsibility and God requires that we bear the responsibility -- not heroically -- not alone -- but together, and the load is lighter. I am touched by the number of people who have given blood -- and the ministers and the youth ministers who have given platelets and that has been their statement of faith. I am grateful to Pastor Randy who has been there for the family everytime he has been called in addition to the times that he has come routinely.

In dealing with long term life threatening illnesses -- it means continuing to put one foot in front of the other and doing when you are tired of doing, and so tired all you can do is cry. I see Sue and Bert exhausted from long days and nights, frustrated and loving -- and see a smile break throught the moment when all else seems lost.
I guess that's why Sue and I, and Shawn another MOM (with a baby in PICU) ate so many bonbons while Abby was in PICU.

All of you have been very encouraging throughout this long journey and you are treasures and I thank each of your for sharing the agony and the joy of little Abby's healing process. We continue to count on the miracle of God's grace and skilled doctors and the countless people who play parts in Abby's life -- from checking her vitals to sending her smiles through the mail. I will try to get better about doing the emails -- got off routine when I was in CT.

Thank you and God Bless each and everyone of you,
Karen

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Monday, January 01, 2001 at 08:53 AM (CST)

HAPPY NEW YEAR
to each and every one of you.

Although 2000 was not as Suzanne, Abby and I would have hoped, we are encouraged by the blessings we have had bestowed upon us… Abby remains in remission from her AML, all the family, friends and neighbors support this past year, new friends and great care givers, strengthened family bonds and increased love and appreciation for life.

As 2001 was rung in, Abby watched the fireworks from her window at the hospital. Her Auntie, grandma and grandpa Barker, visited her earlier and she opened a couple of more Christmas gifts. We have been bringing the Christmas gifts in a day at a time and she has been enjoying the daily anticipation. We’re saving some though for her return home!!! She is definitely regaining her strength. They have weaned her off “blood foods” (TPN and lipids) and she now receives her nourishments via her feeding tube. She is receiving a product called Vivanex with potassium supplements. The potassium is needed to counter its depletion in the body by the anti-fungal medication she is on, Amphotericin B, or otherwise known as Ampho-terrible because of it’s bad side effects. She is also being weaned off of Methadone and Valium so things are looking up. Yesterday she walked for me and had her first bites since this whole episode began. She had a piece of roast beef that she actually held down! Amazing. I would have though chicken soup would be the first but that attempt failed miserably a couple of days ago.

The big question is how long she will have to remain on the anti-fungal medication. She cannot start her last round of chemotherapy until it is completed. We are awaiting a decision by the infectious disease doctor who is most familiar with Abby’s case and he will be in on Tuesday. Walter Reed Army Medical Center says that she has to remain on it for another 12 days to reach the maximum therapeutic value. She has been on it now for 16 days. It’s critical to ensure the right amount of this drug is used because of the threat of a fungal infection returning during her next chemo round, even though it is a hard drug to be on.

Until then, Mommy Suzanne and I are getting Abby to eat and exercise more so she can either be well for her last of chemo or come home as she finishes her anti-fungal meds. She really wants that feeding tube out of there but she needs to help us get to that point. It really is encouraging to see her getting better every day.

Abby was selected as a featured child of the month for this month on the Make a Child Smile web site!!!! She made her debut this morning. Take a look. I have the link on the bottom of the page. Hit the featured child button when you get to the site.

Thank you All for your cards, letters, words and prayers of encouragement in our guest book, and personal visits. It means a lot and we do draw strength from it. May God bless you in the New Year and bring forth success and happiness for you and your families. – Bert, Daddy to Abby

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Thursday, December 28, 2000 at 05:23 PM (CST)

Greetings:
Just a short note to let you know what is going on with Abby. First, she will be in the hospital for about 2 more weeks. Second, they must proceed with her chemo ASAP to ensure there is no relapse due to the slipping of the AML protocol's time frame.
Abby still can't hold down food and continues to be fed with a feeding tube that goes from her nose to her stomach. She is also receiving lipids and tpn (nutrition) through her IV. She can't stand up without help nor walk because she is too weak. She is being weined off of the sedatives and pain killers she received in the PICU (pediatric ICU) using methodone and valium. They did a CAT scan and found 3 nodules in her lung and a 3 mm spot on her brain last week. Upon repeating the CAT scan and MRI yesterday they have determined the spot on her brain is significantly smaller and the nodules are gone. They will repeat the scans in 4 - 6 weeks and hopefully the brain scan will be okay. The doctors don't know exactly what the spot is but it doesn't have the characteristics of cancer. They wonder if it was related to the infection she had that put her into septic shock. Abby has not opened her Christmas presents so if you are wondering why you haven't heard from us, it is because they remain waiting for her under the Christmas tree. Last night she said a prayer outloud. She asked God to change her into another little girl because she said it hurts a lot to be Abby. My heart aches for her. Like any parent would... I wish it was me with the leukemia not her.
Thank you everyone for your love and support. I am touched by all of the messages left in the CaringBridge guest book. I appreciate the words of encouragement left by the friends and loved ones of Justin Thatcher.
Please continue praying for our ABBY.
Love, Suzanne (Abby's Mommy)

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Monday, December 25, 2000 at 10:32 PM (CST)

Dear Friends and Family,

Merry Christmas!!! This is Auntie Karen writing a quick update -- I am in Connecticut, so have been calling to see how Abby is doing. It seems that she has picked up today and is feeling a bit better. She was having some fun and took a ride in a wagon around the hospital. She was also visited by the hospital dog, Bosco. What miraculous news it was to hear!

I hope that you have had a wonderful and Holy Christmas and a wonderful and blessed New Year. We have so much to be grateful for and I thank each and everyone of you for joining in our hopes and dreams of Abby's wellness and a cure for all children who have leukemia or suffer with cancer ...

Thank you to all of you who have donated blood and platelets in order to give life to others. We had a nice turnout the week before Christmas and I think there were about 20 people who donated platelets in honor of Abby during that week. I know that there are many more of you who have donated platelets and blood in other locations. Though I know that there are news articles about problems with blood collection and screening, please do not let that discourage you! There are still people in need and if you are an eligible donor and able to give, the systemic problems that are being experienced with blood collection can be overcome and each day there is a continued need.

I have become more and more aware that giving the gift of blood is really a ministry -- it takes time and personnal sacrifice -- and it is an anonymous gift to someone who is in need. Without sermonizing, which I am capable of doing, I want to thank each and every one who has given blood and platelets on behalf of Abby and her family. She had countless transfusions these past two weeks and I thank God that the blood was available for her.

May God bless you and keep you safe from all harm.

With God's Love, Auntie Karen

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Saturday, December 23, 2000 at 08:09 PM (CST)

Dear Friends and relatives,
I am happy to share some good news with you. Abby is no longer in septic shock! Yesterday, Abby was moved from the PICU to the ward. She is still very uncomfortable, but she is making daily progress. Her Grandma and Grandpa from CT have arrived and are planning to spend time with her. Mom was able to go see her last night, but my Dad was ill and has not yet been able to go to the hospital.
Sue and Bert are planning to celebrate Christmas with Abby the day after she is released from the hospital. She is still too sick to really be able to open her gifts and it will be better for her when she gains strength and can really enjoy the day.
She has an MRI scheduled for the Wednesday after Christmas and we are hoping that it comes out clean. Please continue to keep her and the family in your prayers as she goes through the next weeks. She is going to be able to be home for only a week between this hospitalization and the next round of Chemotherapy.
Please take care and have a Happy holiday and know that your prayers and kind thoughts and faithful cards have helped the family tremendously.
Roger and I are leaving at 6 am tomorrow to go to CT to see our children and new Granddaughter, Amanda Rose -- Abby is looking forward to seeing her in the near future. I will not be able to update you until we return in 5 days.
Blessings this holiday season. Love, Karen

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Sunday, December 17, 2000 at 02:27 PM (CST)

Hello everyone,

The days seem to be passing fast and Abby's progress seems to be moving forward at a very very slow pace. It looks like she may still be in intensive care at Christmas. Today her ANC count was 4,000 and so they are taking her off the GCFS that helps her boost her white blood count, since that is up, but now they need to see if she is making any on her own or if it is simply caused by the therapy. Her blood pressure is still erratic. Tomorrow there will be an MRI and the head of infectious diseases will get together with Abby's hero -- Dr. Porrea and ponder the course of action.

Abby is a little more alert since they have lowered the level of sedation so she can move her muscles just a little bit. They do not want her muscles to atrophy. Her nurses and doctors are amazing. We read her stories and talk to her a lot.

I am afraid that I do not really understand what a SWAN is or does, seems it is just an instrument for measuring the activity of the heart, I told you all that it was helping her heart to contract.....?????? Bert gets this stuff much better than I do, but after all I am only trained to deal with the human spirit and I can tell you that Abby has a strong spirit and a strong will to live. She communicates with us by raising her eyebrows and even nodded her head once. She is not uncomfortable because they keep her medication levels so that she won't be.

We are all hoping and praying for yet another miracle! A Christmas miracle!! And yes it would make us all happier if it happened now, but we hope that God will grant Abby and us patience during this time of waiting.

May God bless each and everyone of you during this season of Christmas.
Love, Karen

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Saturday, December 16, 2000 at 12:35 PM (CST)

Dear Friends,

Progress seems to be in baby steps for Abby, but at least they are baby steps forward. She has reponded to the therapy to boost her white blood count. This is an artificial boosting, but it does give her some temporary cells to fight infection.

They do not feel that the cause of this setback is the strep infection. In constant contact with Texas Children's Hospital, they are planning to give her an MRI on Monday to see if there is a fungal abcess on one of her organs. Without the white blood cells, it would not show. The white blood cells gather around an area of infection and so there is a better chance if there is an abcess present, that they will find it after the cells have had a chance to do their work.

Abby's fever was slightly lower by 1 degree over the past 24 hours than it was the previous 24 hours. That is good news! Bert is there now with Abby and going to teach her all about football. He has this idea that if he tells her the game move by move, that on a subliminal level she will learn to love the game (she hates it now), and then he will have a foot ball buddy! Go Bert!!!!!!!!

Sue and I will go spend the night again tonight and I thank you all for your support and prayers. Several people have asked about providing meals. If any wants to they can contact my husband, Roger at 757-312-8389 and he can arrange with you to get it into their fridge or delivered to the hospital. Mostly they are eating on the fly, so it is great for them to have something to eat in the fridge.

As many of you know, Bert made pasteles with Abby, Sue, Alfredo and his two sons this past week. He has been eating them every night for dinner and I think even he might be reaching his limit for pasteles.

Sue and I ate bonbons last night after we said goodnight to Abby and I think it put us in a sugar stupor, because the two of us and a third MOM who spent the night all stirred to consciousness by BERT when he arrived to take the next shift. It is good that Sue is catching up a little bit on her sleep, and I must say that I certainly wouldn't want to sleep over alone in the waiting room at the hospital -- so we are all catching up on girl talk and sharing stories, and reminding Abby about all of the great adventures that we have gone on together, during the wait for Abby to recover.
Take care everyone and best, Love, Karen

PS the platelet drive is still on for Monday in case any of you who have signed up are wondering about it. We still expect that Bert is going to be there to give too!

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Friday, December 15, 2000 at 05:02 PM (CST)

Hello Friends,
They successfully put a SWAN into Abby's heart yesterday. The swan makes it possible for her heart to complete its beat. This has helped her a bit. They have discovered that the infection is strep that she is fighting. They have been treating her with a wide spectrum of antibiotics all along, so that the strep will be covered with it. They have also given her injections to try to boost her white count. He white blood cells have increased, however her neutrophils are still at 0, and so she needs them to increase because they are what help her to fight infection.

She has stabilized a bit more, but the situation still requires intensive care. I mean to tell you that the PICU nurses never rest. They are doing things every minute during their 12 hour shifts to help make adjustments to her medications and all of her levels and insure top quality care.

Sue and Bert and Roger and I are all very grateful to all of you, as is all of her family that live around the country for all of you thoughts and prayers and kind words.
It helps to be surrounded by caring and concern and to know that you all are doing so much of the praying, especially when we are just soo tired.

We will update as soon as there is any news. Love, Karen

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Thursday, December 14, 2000 at 11:58 AM (CST)

Dear Friends and Family,
Abby needs your prayers. This is Auntie Karen writing. Bert is at the hospital for the day shift and Sue is trying to catch a few hours of sleep. I am sorry to have been so out of touch, but want to update you.

Abby went into the hospital with a fever on Sunday night. She has had a very bad couple of days since then. She was moved to the Pediatric Intensive Care Unit yesterday afternoon. She has been stabilized on a ventillator and is septic. They are trying all kinds of medications and other therapies to help her body reach a stage where it might begin the healing process.

The doctors have been in consultation with Texas children's Hospital and who have made some recommendations for more nterventions, since she is stabilized, but not getting any better. She is having two surgeries this afternoon at three O'clock to insert new lines for additional therapies. They will be trying to stimulate her white blood cell development through one of these procedure and checking her heart through another. They are also treating her for the possiblity of a fungal infection that is common with chemo and radiation patients.

This is a very difficult set back for Abby, and her family. Thank God that Abby is at least comfortable at this point. She had been laboring terribly just to breathe up to this point. Her situation changed very quickly and we ask for your prayers for her during this time of unknowing. Thank you for your support all along this winding path, one we have never traveled before and hope and pray for a cure for this horrible disease and for Abby's full recovery. God bless you. Love, Karen

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Sunday, December 03, 2000 at 08:02 AM (CST)

We all just went through a tough week. This particular chemo, Cytarabine or more popularly called Ara-C, did exactly to Abby what it did last time. She spiked a fever on day two, of treatments that lasted five days, of 103 degrees and pretty much had one the rest of her stay. Once she spikes a fever, the doctors’ culture her blood to ensure it isn’t bacterially induced and then she’s allowed to have Tylenol to help arrest the fever. Once she was cultured and charted a coupled of times, we were allowed to keed her on Tylenol which helped. She had all the symptoms of what appeared to be the flu; fever, body aches, weakness, suppressed appetite and diarrhea. She never got out of bed except to use the potty and was having a tough time standing after being bed ridden a while. She completely lost her appetite but she did manage to at least have a little chicken/noodle soup every day. Even her most favorite Cheeseburger Happy Meals couldn’t get her to eat. Because this happened the last time with Ara-C, we knew it was the reaction to the chemo but it still makes it difficult. When she would call out “Help me!”, which she often did, it would break my heart. She needed lots of hugs and love. Suzanne and I tag teamed her round-the-clock love and hugs with Suzanne taking the nights and I the days. It keeps us both sane and fresh.

She received a bag of Ara-C, dripped in over an hour, twice in a 24-hour period. She was treated, as she is whenever she receives chemo, with the anti-nausea drug called Zofran and has to have eye drops to prevent cataracts while taking this chemo. She positively cannot stand those eye drops. She receives two drops in each eye every six hours and although she is brave by accepting the fact that she has to have them, she cries in pain from the sting when it’s administered. It soon dissipates though. She also has to rinse her mouth at, the same intervals, with Texas Children’s mouthwash solution to keep her mouth cleansed in case of mouth sores. We kept her entertained by reading, doing some light arts and crafts, and watching her favorite shows. She loves those Veggie tales! When Auntie Karen and Uncle Roger came to visit, she pulled herself through to manage a rousing game of Candyland, one of her most favorite games.

Abby was bound and determined to leave early on Saturday because she was selected to go to the North Pole as a “Make-a-wish” child and meet Santa. She was extremely excited and determined to go. Everyone on staff at the hospital really helped us in getting her going in the right direction so she could be whisked away. She was transfused with red blood Friday night to get her “juiced” up for home. We managed to leave early Saturday afternoon and rest a bit at home before we left to the AIRPORT. That’s right the AIRPORT. We received our tickets and boarded a United Airlines flight to the North Pole along with some clowns, elves, and Happy Meals. The aircrew was awesome, singing all the way… ho ho ho!!!! Actually, we made a huge one-hour circle and landed back at the same terminal where Santa, Mrs. Claus, Rudolph, and Frosty were waiting. To her, it was the North “by God” Pole!!! She talked to Santa, received some wonderful gifts then we left through the “Magic door” and miraculously were back in Norfolk!!! It was absolutely wonderful and her eyes beamed with joy. We saw all of her other “cancer” friends there which made her happy. She bravely wore her mask the entire flight!

So now she is back at home resting and looking forward to decorating for Christmas. It has just started to snow as I write this so when she awakens, she will be very excited. I better leave for now and break out the warm clothes!!! Thanks everyone and God bless… Bert (Daddy to Abby)

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Monday, November 27, 2000 at 04:44 AM (CST)

Abby has sailed right along and has kept us all busy. After the trip to Texas she was admitted for her first round of Consolidation chemotherapy with new drugs she was not exposed to previously. Her new drugs were Etoposide or VP-16 and Mitoxantrone. The Mitoxantrone was deep blue in color which intrigued her as it traversed down her lines and into her body. Again, she tolerated the chemo so well. Absolutely no side effects were noted during her 5 days of treatment in the hospital. She reminded Doctor Porea that she still had her hair, for which she was obviously proud of, although it has thinned out considerably. She did so well on this round that she was released on Halloween day and was able to go trick or treating! Although she was weak from her hospital stay, she managed to go around the neighborhood for tricks and treats. It meant a lot to her to be able to do that.

The following day we had to go back in and get transfused with red blood cells.
As expected, the chemo started taking effect. She again reached the point of low counts for red cells and platelets 10-14 days afterward. She was transfused with both on Veterans Day. She was somewhat nauseous and weak so this chemo round certainly had a delayed effect. She required an additional round of platelets (thanks Jorge!) before her marrow started rejuvenating itself. She remained neutropenic (white infection fighting cells were low) for about three weeks and has just started recovering on her counts. Thank God she continues to do well while being neutropenic! We have been absolutely lucky that she has not caught something that would force us to bring her back in for 10 days of intravenous antibiotic hospitalization (knock on wood).

Because her counts were slow to recover, her chemo is being delayed until the 27th of November. That meant Thanksgiving at home. Before we started the festivities though we all received our flu shots. We made it through the soreness and now feel better protected over the flu season with an immunocompromised child. The Make-a-wish folks visited us and as expected, Abby wished to go to Disney World. We have tentatively set plans to go at the end of January as a reward for completion of her chemotherapy treatments. The ladies from Make-a-wish were so nice and we thank them and all who donate to this wonderful charity.

The Cupo’s came up from North Carolina and stayed with Auntie Karen so Abby could play and visit with one of her most dearest friends, Althea, over the Thanksgiving weekend. We all had a wonderful Thanksgiving together. It was the first time since diagnosis in August that Abby had a friend over at the house to play. She had such a wonderful time and it was great to see her smile! We certainly had a lot to be thankful for, including the fact that she remains in remission and is recovering well, as well as all the great support we have enjoyed from friends and family.

Abby will start her next round of chemotherapy (Consolidation II) tomorrow. She will again (she had this as her Induction regimen) receive high doses of Ara-C, which brought on high fevers the last time she had it. Hopefully, she’ll be able to sail through the next 5 days of this stuff. Abby has been chosen as a “Featured Child” for the month of January on the “Make a child smile” web site which was great news for us all. I added a link to their wonderful organization site that features children who are battling chronic and serious illnesses. I added an additional link to a leukemia web site that has been a great resource to us. I will be updating the pictures soon so come back and check. I’ll also be updating more often now that our path is clear. I left my last journal entry up as long as I had because it was such a crucial decision point for us. God bless you all. – Bert (Daddy to Abby)

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Sunday, November 26, 2000 at 06:20 PM (CST)

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Monday, October 30, 2000 at 08:59 AM (CST)

Yes, we are back from Texas and glad to be back at home… somewhat anyway. We arrived Thursday evening at 11 PM and had to be in the hospital by 7:30 AM on Friday for a Bone Marrow Aspiration test and her interthecal (spinal) chemotherapy treatment. Hectic scheduling to say the least. The trip was a great diversion for Abby from her battle with this illness. THANKS to Auntie Carmen for watching over Abby while Suzanne and I conferred with the doctors. Thanks also to Uncle Alfred (Carmen’s hubby) for being our host in Houston. Hopefully we’ll post some updated pics soon. I would be remiss if I did not pass along a BIG thank you to everyone for your thoughts and prayers in guiding us on our trip. They are truly heartfelt and a source of inspiration and strength for both Suzanne and I. We asked our lord for strength and wisdom before every meeting and to show us a path. As it turned out, we received the answer to our prayers.

Suzanne and I are in agreement. We are going to wait. After excruciating soul searching we decided that was course we were destined to take. We hope for a positive outcome from the Chemotherapy which we are presently seeing and hope we have made the right choice. We did, however, agree to undergo further match testing at Wilford Hall and to this point, Suzanne and Abby still look compatible. Going to both Lackland AF base’s Wilford Hall Medical Center and Texas Children's Hospital in Houston to get second opinions was definitely the way to go in figuring our way through this. Both places were awesome and talk about diametrically opposing viewpoints on how to proceed! Wilford Hall aggressively advised us to go ahead with the transplant in her first remission, which is what we have read in literature as the best possible option for increased long-term survivability. Texas Children’s said to wait because her prognosis leads them to believe she might have a favorable outcome from the chemotherapy and if she relapses they recommend a transplant. They also recommended further testing to see if she had Myelodysplastic syndrome which would predispose her to leukemia. We are going to do that although preliminarily it looks like she did not have that.

Abby being in the gray area of whether to proceed to transplant or not, makes it a tough call. Because she has no chromosome translocations or abnormalities that would make a positive response from chemotherapy less likely or favorable, we are stuck with a judgement call. Heck of a place to be in for parents that are not medically inclined to make such a call. I think the turning point for us both was when Wilford Hall said we can go to transplant in the next two weeks and the bottom line was that we were either going home with Abby in approximately four months or not. We definitely were exposed to the harsh realities of what a Bone Marrow Transplant means… a tough treatment to say the least. We are not ready for the loss (no one ever is) but since she is in remission and finishing up her chemo, we’d rather she have some treatment-free days. Even if we end up losing her later, we want her to have some carefree days of no treatment than more pain and suffering. A time for her to touch people's lives, leave her mark in the world, and just be a kid. .

We could possibly be missing a window of opportunity which eats at us daily. Texas Children’s believes we are not and they are hopeful that even if we have to go to transplant because of a relapse, the outcome would be relatively the same as in the first remission. This counters some conventional wisdom and is certainly counter to Wilford Hall’s thinking but one that we have to believe in to go forward. One undisputable fact overshadows it all though, she is doing so well in responding to the chemotherapy. If it comes to transplant, both centers are awesome and offer advantages and disadvantages. We’ll cross that bridge if and when it comes to that. Hopefully we will never have to take that route. This trip makes us better prepared to make that decision and for that we are extremely thankful.

Abby is doing extremely well as Karen had posted on her emails. She is going through her first of three consolidation chemotherapy regimines and is tolerating them unbelievably well!!! She is active and eating. She was visited by Della Reese from Touched by an angel stopped by to visit Abby. She picked her up in her arms and said “God is going to keep this one here!”…. wow!!! When Abby told her about her 7 angels, Della said you now have 8. The angel Tess is now with you. I found out that she is an ordained minister. Her marrow aspiration came back with positive results that she is still in remission. Thank and praise God. Keep those prayers up, they are doing miracles!!! Thank you all and God bless…. Bert, Daddy to Abby

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Thursday, October 26, 2000 at 10:44 PM (CDT)

WELCOME BACK FROM TEXAS!!! The Yellow Rose of Texas "Abigail Anne Rose Ortiz" is back in town -- Yeah Abby!!!! They have lots of news, and so I don't mess it all up, I am going to let Bert and Sue share it with you.

A great BIG THANK YOU to all of you who gave platelets today or are planning to donate tomorrow! It makes such a difference for people who need them and those of us who are healthy enough to be able to give have a lot to be thankful for!!!! Our health is everything and when it can contribute to the well being of others it is such an added privilege!!!

Congrats to Robin and Reid who completed the 26 mile marathon in Washington D. C. this past weekend! I know that is redundant but I am so impressed I had to say it that way! You can read their special message to Abby in the message section.

Abby goes back to the hospital tomorrow morning at 7:30 am for an 8:00 Bone Marrow Treatment and then her five days of chemotherapy. Since she is now in remission and her blood counts are good and she is 39 pounds (gained 3 pounds in Texas), the chemotherapy is a different type.

Have a great weekend and if you want to leave Abby messages on the caring bridge or email them to me at kebd13@aol.com I will print them and deliver them to her at the hospital. Love, Auntie Karen

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Wednesday, October 25, 2000 at 06:28 PM (CDT)

Dear Friends,
Please help. I just spoke to Jennifer at the Red Cross. She said that they have NO PLATELETS left and they need to get many donors in the next two days, that is for tomorrow and Friday. She said that they (the Red Cross) will be up all night long calling people to donate. They were wiped out because the Navy needed so much blood this past week, I am assuming for the victims of the COLE. SO IF YOU LIVE HERE IN VA PLEASE CONSIDER DROPPING WHAT YOU ARE PLANNING FOR TOMORROW OR FRIDAY AND CALL 757-623-4880 TO DONATE PLATELETS and say YES! Abby goes in Friday to start chemo again and she will need them soon again.
Roger and I are scheduled for tomorrow at 11:00 am and I hope that we run into someone we know there -- it will make my day!!!! And then when Abby and Sue and Bert come back from Texas on Thursday Night -- life will be back to normal. Take care and PLEASE, PLEASE donate. You can donate platelets from other locations too because they will ship them to where the needs are. I was told something I did not know, you can donate platelets every 4 days!!!! They prefer 2 weeks apart. Thanks for bearing with me through this. Love, Karen

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Wednesday, October 25, 2000 at 06:22 PM (CDT)

Dear Friends,
Please help. I just spoke to Jennifer at the Red Cross. She said that they have NO PLATELETS left and they need to get many donors in the next two days, that is for tomorrow and Friday. She said that they (the Red Cross) will be up all night long calling people to donate. They were wiped out because the Navy needed so much blood this past week, I am assuming for the victims of the COLE. SO IF YOU LIVE HERE IN VA PLEASE CONSIDER DROPPING WHAT YOU ARE PLANNING FOR TOMORROW OR FRIDAY AND CALL 757-623-4880 TO DONATE PLATELETS.
Abby goes in Friday to start chemo again and she will need them soon again.
Roger and I are scheduled for tomorrow at 11:00 am and I hope that we see run into someone we know there -- it will make my day!!!! And then when Abby and Sue and Bert come back from Texas on Thursday Night -- life will be back to normal. Take care and PLEASE, PLEASE donate. You can from other parts of the country also because they will ship them to where the needs are. I was told something I did not know, you can donate platelets every 4 days!!!! They prefer 2 weeks apart. Thanks for bearing with us through this. Love, Karen

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Wednesday, October 25, 2000 at 06:22 PM (CDT)

Dear Friends,
Please help. I just spoke to Jennifer at the Red Cross. She said that they have NO PLATELETS left and they need to get many donors in the next two days, that is for tomorrow and Friday. She said that they (the Red Cross) will be up all night long calling people to donate. They were wiped out because the Navy needed so much blood this past week, I am assuming for the victims of the COLE. SO IF YOU LIVE HERE IN VA PLEASE CONSIDER DROPPING WHAT YOU ARE PLANNING FOR TOMORROW OR FRIDAY AND CALL 757-623-4880 TO DONATE PLATELETS.
Abby goes in Friday to start chemo again and she will need them soon again.
Roger and I are scheduled for tomorrow at 11:00 am and I hope that we see run into someone we know there -- it will make my day!!!! And then when Abby and Sue and Bert come back from Texas on Thursday Night -- life will be back to normal. Take care and PLEASE, PLEASE donate. You can from other parts of the country also because they will ship them to where the needs are. I was told something I did not know, you can donate platelets every 4 days!!!! They prefer 2 weeks apart. Thanks for bearing with us through this. Love, Karen

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Tuesday, October 24, 2000 at 08:57 PM (CDT)

Hello Friends,
I heard from Bert late last night. They made it to Texas just fine and had been to the hospital at San Antonio and were aready in Houston when he called. They had long meetings with the doctor and they did some further blood workups on Abby and Sue in order to give them more information on the positive aspects of a transplant. They had the day today to play and since it is Sue's birthday -- I hope she had a happy one and I won't let on that as her sister I know her age!!!! She's such a cutie, my baby sister. She says that Abby will have Grandchildren and I still will be calling Sue my "little baby sister". Anyhow, tomorrow they will be on to Texas Children's Hospital for some meetings and such and will get more information and then they are due back on Thursday night. Then on Friday, Abby goes back in for the next round of chemo. She has a low grade fever now and let's all hope for the best with that. Both she and Sue have to be virus free in order for there to be the possibility of a transplant. More info to follow and I am sure that Bert will have tons to write when he returns. Take care and Love, Auntie Karen

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Sunday, October 22, 2000 at 08:55 PM (CDT)

Hello everyone,
Uncle Roger brought Abby and her parents to the airport this morning to fly out to Texas for meetings with Doctors at two hospitals. Auntie Carmen and Uncle Al are going to see them there and Auntie Carmen has some special games planned for while Mommy and Daddy have to go to meetings. They will have a little time just for fun too. As far as I know they got there safely because I know that Auntie Carmen would have called if they did not meet her in San Antonio this afternoon! Please keep them in your prayers as they go through this challenging time of learning new information and then choosing a path for Abby's future treatment. I know that with the good guidance of the doctors and all of your prayers and support that the path they choose, will be a the right one for Abby. Just in case you read this Abby, Lulu and Butchie are doing just fine! They say, "Woof-woof!"
Take care and God bless you all, Karen

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Friday, October 20, 2000 at 04:03 PM (CDT)

You folks out there must be well connected because Abby's counts were remarkably improved today. She didn't need a transfusion in preparation for our trip to Texas!! So thanks for all your prayers and please keep them up! Her red count and white counts were both improved and she had platelets to give (we'll just let her keep hers though). Her hemoglogin was at 8.5 and her white blood count was at 2,800. She is borderline neutropenic with a Absolute Neutrophil count around 440. At 500 we are not so worried about her exposure and it figures to be well above that on Sunday. Below 500 and she is highly suseptible to fungus and infection which we combat through a prophylactic drug regimen which to this point has been extremely effective (knock on wood). She is a fighter I tell ya!!!

We leave this Sunday for San Antonio for LACKLAND AFB (I said Kirkland last time... duhhh. Those Air Force guys, always on some kind of Land!). They have been really great in coordinating this trip (thanks Irene Coronado!!) for us along with the staff at Portsmouth (thanks Dr Porea!!). We look forward to our consult with the AF folks at the Bone Marrow Transplant unit and the Texas Children's folks in Houston. Of course we are also fortunate for the opportunity to be with Auntie Carmen (she's from Houston and will be with us). Abby is excited. We all are but we're filled with apprehension. At least we don't have to bag ourselves up on the plane for the trip down!

Suzanne and I have tried again on the picture updates. I believe they have a 1 meg lock on size. We'll keep pluggin' on the pics so bear with us. Thanks again everyone and have a great week. God bless,
Bert

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Tuesday, October 17, 2000 at 07:15 PM (CDT)

As some of you may have noticed, I have updated the photo's. I'm having a bit of trouble loading the last page but am feverishly working on it. My plan is to update the photos periodically. I'll certainly let you know when I post new photos through the journal.
Additionally, I have posted all of Karen's emails from the onset of Abby's cancer to the one she sent out last night in the journal history page. This will bring the web site up to date and hopefully I'll be able to keep you posted through journal entries from now on. Karen and Roger will help on updating the site, and for those of you who enjoy her emails, she said she will keep those coming. We'll probably continue those for a while anyway until we get the knack of this way of communicating to all.
With all the good news we have had lately, I am disappointed to say that Abby's red and white blood counts have dropped. We had her blood drawn today and just received an update from Doctor Porea. She is back to being neutropenic and we have to exercise extreme caution again. Doctor Porea said he has seen this before and is not overly alarmed. We will have another test drawn on Friday at the hospital to see if she will need to be transfused prior to our trip to Texas on Sunday, 22 Oct.
Our trip is cruicial in formulating a decision on how we would like to proceed with Abby's treatment. Should we do a Bone Marrow transplant or not? With Suzanne being a good parental match, it has opened that option to us but it is frought with concern. I wish there was an easy answer. That is why we are getting two essentially opposing opinions. DoD's only Bone Marrow transplant site in San Antonio (Wilford Hall at Kirkland AFB) says to proceed now and Texas Children's Hospital in Houston offers the opinion of waiting in case of relapse. I hope the Lord guides us to the best decision. We'll keep you posted to let you know as things progress. Pray that Abby's counts climb for our planned trip.
In closing this entry, we want to thank everyone AGAIN for everything you have done for us from prayers, get well cards, gifts, mowing our lawn, helping us with house cleaning to everything in between. God bless... Bert

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Tuesday, October 17, 2000 at 07:01 PM (CDT)

As promised, here is the compilation of emails, to date, that Karen has put together in keeping everyone that was interested informed of Abby's battle. This will bring us all up to date. It starts from her very first email to a friend and then grew to an almost daily diary. She has done a wonderful job. It is not all inclusive and still lengthy although we have both edited it down quite a bit.
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Date: 8/16/00
Dear Karlyn. I just found out some really sad news that will keep me right here for awhile anyhow. Abby, my little niece (5 years) has leukemia. We are all in profound shock. I have to go to the hospital in a while with Roger. They are taking bone marrow today to try to determine the type. I have not felt this sad since Karen died. Anyhow, I got to go catch up on business. Good to hear from you and don't let my melancholia keep you from writing. I promise not to be down all the time -- but I think this next week is going to be brutal. Love, Aunt Karen

Date: 8/17/00
Dear Karlyn, Adam is coming this weekend so he can be with Abby and her parents. I am so grateful. I am trying to coordinate efforts to get a lot of things done at home in order to make the house ready. This had been the second most awful thing that has happened to some one I love. The first was when Karen died. I am going to take care of Abby tomorrow night while they have the powwow - Her chances are 50/50. We claim the 50 in the full glass. I am sorry for being so morbid. I am hoping at this point for a job here so I can be here and help, so P-T would help a lot and I hope that I get the job in Admissions I was interviewed for on Tuesday. I think it would be ideal. Say a little prayer for Abby please. I will write more when I can and I will be in touch. Love, Aunt Karen

Date: 8/18/00
Hi, Abby has AML which is the most difficult leukemia to beat. Tomorrow night the doctors are meeting with Sue and Bert. Roger is sitting in and I will stay with Abby. Adam, bless his heart is on his way here and I hope he makes it for the meeting and can help be a support. Abby's chances are 50/50 -- so I pray that we get the chance for a full life for this little girl. She may have to have a bone marrow transplant and if she does I hope that we can get a match for her. I have known survivors of AML, and Abby is a real fighter and I hope that she has the strength to keep up the fight. Please call me or email me for any info that you want. I am having trouble keeping up right now, because I am trying to coordinate a lot of things. If you want to come down, please do. You can stay with us, enjoy the beach and our pool is really great. As long as no one is carrying any germs, at least the adults can visit the hospital. Let me know if you want to. If you want I can check on children's policies, it mentioned sibs, but I think that they may classify your kids in the adult category. Please take care and Love, Karen

Date: 8/19/00
Hi, Just a quick update, I have some good news at last! The prelims show that the cancer has not spread to the spine. Her eye is not affected. She looked much better today and her eye is looking much better. She has her line put in and it is working well so far and now she does not have pain from all the needles. After having been out for all these tests, she was perky in bed and I know she is going to make it. She will start very aggressive treatment this week and we need everyone to keep praying for her. Adam got here and is going to surprise Sue and Bert and Abby tomorrow. It just feels so good to have him here and I know it will mean so much to them. We are hoping to have a big family dinner at the hospital. I asked if we could use a room with a table and Bert and Sue have put a request for my lasagna. So I am going to cook tomorrow. It looks like it will be 6 months before Abby can go out in public crowds. She'll be confined to home quite a bit. So we are trying to get ready for her to come home. Meanwhile Bert and Sue are living at the hospital with her and that is wonderful for her. They are great advocates for her. The doctor says that no matter what happens her dog Lulu can sleep at the foot of her bed and she really misses Lulu, so that was good news. We love you all, Karen

Date: 8/21/00
Hello, My heart is really heavy when I sit down to write -- please keep all kinds of prayers and positive thoughts and energy coming Abby's way, and for Sue and Bert. Abby is through with day 3 of the first of 5 rounds of chemo hospitalizations. She will be treated as an outpatient between treatments and have a nurse come to the home. She will have to go in 4 more times for 5+ days each time over the next 6 months. She is a wonderful trooper and is getting used to some of the procedures. Of course she just cannot understand why this is happening. She is brightened each time she gets a little note in the mail and has all the photos that she has gotten up on the walls. People have been really great about getting meals prepared for Sue and Bert and then I take dinner down to them each night so they don't have to worry about food and so they can keep up their strength at least physically. They barely leave Abby's side and she is feeling much safer with then there. If any child has a chance for healing Abby does with such great parental care and surrounded with love. Please keep up your prayers and I will try to keep writing little updates about how she is doing. We are trying to prep the house for her to come home and her puppy Lulu is being neutered today to help get the process ready. The doc says that no matter what happens, Lulu can sleep at the foot of her bed. Lulu's vet has taken Lulu home for a few days to take care of her. What a wonderful person she is! The neighbor who is a dry cleaner has taken out tons of linens to get them ready so the house can be as dust free as possible. There are tons of things to do, bus most important of all please pray. Love, Karen

Date: 8/27/00
Hi, There are lots of people who are not on this update, because our computer crashed and I haven't gotten everything updated yet. Please send this to them and ask them to email me so I can add their addresses. I don't have Nora or Kitty and Bob, Nancy Rose, Beverly and Jack Ryan, Erik Duncan and lots of others and I'd really like to have their emails. When our disk crashed we lost it all. Abby is home from the hospital now until this Friday and really happy to be home. She came home last night after one last blood transfusion. What a trooper! Friday she has to go in for chemo in her spine and they will put her under for that. she is in constant need of O+ blood and platelets, but she needs each platelet transfusion from an individual donor and it needs to be timed because the life of the platelets is so short. A bone marrow transplant is not in the plan right now, but could be down the road. If she needs one she will need an O+ match. So next time you get to a doctor, if you are so inclined and don't know your type you can check on it. Family matches are best. Sue and Bert are tired and have been at the hospital 24 hours/day leaving only for short periods of time. They are really happy to be at home and I think Bert may go back to work a few hours a day, but not too much more for awhile. The Navy Hospital is wonderful and Abby is being treated in their pediatric oncology wing and it is state of the arts. The staff is great and the leukemia is being treated very aggressively. We are all very hopeful and since Abby is a fighter her chances are better than they would be if she were a docile. Her dog Lulu was fixed while she was in the hospital and her Vet took Lulu home so we could work on the house and the pet sitter took Butchie. The vet took time from her own busy schedule to train Lulu and now lulu can heel, sit, stay, is potty trained and stopped jumping on people! Her doc says that no matter what happens Lulu can sleep at the foot of Abby's bed. The house is now set up with the guest room all redone as an isolation room for Abby. Uncle Roger painted it Barbie pink at her request and it is sterile for those times when she has to have medical procedures at home. A nurse will come to the house at least twice a week and she will get some of her blood draws and chemotherapy at home in between her next four 5 day stays in the hospital. At this point human germs are of the most danger to her, so she can't see anyone who has a cold or anything like that. If you are planning to come visit, please come and stay with us. We have tons of room and live only one mile from her and Bert and Sue and that way they can maintain the healthiest environment possible for her. Sue was having packages sent to our house and quite a few have arrived, and Abby has had a great time with all her surprises. Since someone has to answer the door to sign for packages at times it is better that they come here -- but I can check with Sue and ask her again. I go over there all the time and also to the hospital. Uncle Al, Bert's brother was able to fly in twice and spend the day and yesterday Abby's Grandpa Ortiz came with him to spend the day. Fortunately Uncle Al is a pilot and they were able to jump flights from Atlanta where he lives and Grandpa was visiting from Texas. Everyone here, Bert's Navy buddies and their wives, Sue's friends from Cat Rescue and Cat Love, The play group Moms, our minister, the Navy chaplain and all of our family have been so great. Our realtor even came over and helped get the house ready and is sending a house cleaning service for the next 3 weeks to help ease the transition home. That's about it for now. Keep all kinds of good thoughts, prayers and positive energy coming this way. Love, Karen

Date: 8/28/00
MOM, DAD-- Abby's platelets are very low and she has to go tomorrow for a transfusion. It means that the chemo is working, so it is good, but they do have to be replaced. Love, Karen

Date: 8/29/00
Hi MOM & DAD -- yes today, the nurse took blood and the levels were dangerously low of the platelets and so they went this am -- I went over and cleaned up a little while they are out, cuz I had to bring them forms anyhow. Good thing we have email or our phone bills would be astronomical. Then she has to go back Friday. She really wanted to have Sunday school, so I ordered a curriculum from Vacation Bible school and it has all kinds of fun things in it. I am hoping it is here by Sunday. She is really excited about it. And of course she has an ark. Friday she goes back for the bone marrow sample and the spinal chemo and of course she will be put out for that. Love, Karen

Date: 8/31/00
Hello, Just a quick note to all of our family and friends about Abby: She is at home and really loves being back with her toys and dogs. Tuesday she had to go back in for platelets, but came back the same day and met two boys at the hospital who were also getting blood for their treatment. She has to go back on Friday for more testing and treatment and I do not know if she has to stay overnight or can come home the same day. She loves getting mail, so if you have a chance to drop her a note or card, she is even reading some on her own. Abby is going to have Kindergarten at home 5 days week for two hours each day. Of course she is very disappointed not to be going back to school with everyone else. She really wanted to go to Sunday school too, so I ordered a really fun curriculum about Noah's Ark and all the animals. It actually is a vacation Bible School Curriculum and comes with some crafts. She is counting the days to Sunday and I hope it arrives. She has already told me that if it doesn't she has a children's Bible that someone brought her in the hospital, so we can substitute. Yesterday we all played Parchesi and Chinese checkers. Abby and I have formed and alliance (like on survivors) against whomever we play with, so we always beat Sue and Bert and Tiger and Roo who also have seats at the table. Sue and Bert are both working very hard and are tired. And of course they are there all the time to help their little Abby get well. They are probably going to have to get an additional phone line because they keep missing important phone calls while making other calls. Bert got a beeper and I guess we are going to get one too. If you plan to visit down here we have plenty of room in our house and we are even within walking distance of Sue and Bert. Please plan to stay with us. Abby is limited in visiting and cannot be around anyone who is sick or even has a sniffle. Sometimes she is more limited than other times depending on her blood count. Anyhow, I hope you have a good day. Love, Karen

Date: 9/1/00
Hello today, Today there is GOOD NEWS! The tests and chemo for Abby today and the waiting for MOM and DAD were very difficult. But there is some really good news from the preliminary results. For all of you who did not receive the email that her DAD wrote about all of this long process of diagnosing Abby's illness, I have included a copy that he forwarded to me. I hear that he is now known as LDO-MD since his crash course in medicine and triage. Here is the GOOD NEWS -- The amount of abnormal cells (or blasts) in Abby's bone marrow has decreased. Initially the bone marrow contained 60 per cent blasts. We do not yet know how much of a decrease there has been but the doctor could tell from looking at the bone marrow that there is a GOOD DEAL LESS!!!!!!The results from the biopsy and the bone marrow will be available next Tuesday (in about 2 weeks).Upon the initial reading of spinal fluid that they took while doing the spinal chemo today, the doctor said that there were no abnormal cells (blasts) present in the spinal fluid. There had been bad cells there in the last test. They had also completed and were able to report from a previous test that all of her chromosomes are normal – 46XX . There were no abnormalities or translocations. I guess that chromosomes 13 and 17 can cross. What do I know is, I sure which I had done better in biology in college, though I don't really think that the cock roaches and frogs we dissected would have helped me much with this tough stuff. And the best news is that Abby has a 2-week rest before going back in for 5 more days of Chemo. She will continue to have blood drawn and tested by the nurses that come to the house, but she will only need to go back in for blood or platelets during these two weeks. They are able to take these from her helper that is a central line that allows them to draw blood and give her chemo without sticking brave Abby all the time. She is really happy to be home and I tell you the waiting is terrible when you are waiting for results. With such great parents and everyone pulling for her I just know that she is going to be a living miracle child -- maybe she'll be a doctor herself someday!
This is going to be a long haul, but when you know that what is supposed to be happening with healing is happening, it helps everyone to look to the day when Abby is going to be healthy again and can resume her childhood. Now we have some fun plans for the long weekend. We are going to eat good food and have a BINGO festival and play games, since she is still homebound. Abby put on .7 lb in the last 3 days and is on the way from her low of 30 pounds to her normal weight of 42 pounds and by now since I think she grew a little taller maybe we hope for 45 pounds!!!!! Her appetite has returned and she is happy to be enjoying food again. The Sunday School Curriculum has arrived and it is in a great little suitcase that I can't wait to open and show her. We start up this Sunday. I have 2 dogs named Paddy and Rocky and they love Abby and she loves them back. Tomorrow they are going to go on a field trip to visit Abby at her house in the front yard. I know that they miss Abby visiting at our house. Anyhow that is what is up to date today and I hope that this makes you as hope filled as it has all of us. Love & best wishes to all of you, Karen

Date: 9/2/00
Hello, We just came back from having dinner with Bert, Sue and Abby. After the difficult tests and chemo yesterday they are trying to have a bit of a normal weekend. Just after dinner Abby started to feel sick to her stomach so Bert had to phone the on call Doc who wrote a prescription which of course could only be filled at the Navy hospital. Bert had to drive the half hour each way to the Naval Hospital in Portsmouth to get it. It helped make Abby feel better after she took the medicine. I think that with a critical illness like this -- it is very hard to imagine what everyday is like. Everyday is as unpredictable as the day before -- they have likened it to bringing a new baby home from the hospital and trying to adjust to a totally new lifestyle without having had 9 months of planning. Currently Abby is still neutropenic (????SP) which means she has no antibodies and cannot see visitors or go anywhere. Since Roger and I lived with Abby and Sue and Bert for a year and now live so close, we are very fortunate to be able to see her and them on an almost daily basis, but will stay away if we get even a sniffle. The changes in daily routine are radical down to the frequent hand washing, mouthwashes and the medical routines of changing bandages, flushing tubes, etc. Bert has a daily list he prints off and they check to make sure that every medication is given and all of Abby's needs are met. I have watched it all a couple of times but could not do yet. Roger and I hope to learn in order to back Sue and Bert up if they get sick. As always the great MOM, Sue keeps Abby busy and active doing crafts and playing with her toys and dolls. She (Abby) has decided to be LIL from the Rug Rats for Halloween. Have a great Labor Day weekend. Best, Karen

Date: 9/18/00
Hello everyone, Sue told me the wonderful story of one of Abby's nurses. She is written up in a newsletter. She is a 20 year survivor of AML. Isn't that wonderful!!!! Another one of Abby's nurses has a nephew who she lives with who also has leukemia and she helps to take care of him. Abby had a really busy day today with the nurse visit, her kindergarten teacher came and taught her about Johnny Apple Seed. Abby got on the phone to me and said Auntie, "Did you dress up like Johnny Apple Seed when you were little and take my mother around as the bag of seeds?" Sue -- your memory is like a hawk! We did that in a summer school costume contest. I think we got most original. Poor Sue in the burlap bag! Abby also had her speech therapist come today. Her tonsils and adenoids had closed off her throat so much that she had trouble learning some of her sounds. The therapist had a lot of fun with her. Abby knows more big words than most adults do, so I am sure that the therapist will have a real challenge. Things are riding steady so far today, I hope that this hospitalization is a good one. I'll write after I hear about the latest blood test that was taken today. Pray for her blood levels to keep on rising so she can have her treatments. Thanks for everything and have a good night. Karen Duncan

Date: 9/19/00
Hello out there. We have some good news! Abby's blood counts have gone up. Her platelets went from last Monday 51,000 to last Wednesday 127,000 to yesterday 271,000. Isn't that great! Her red blood is at 8.7 and the anc (whatever that is) went from 124 to 374 -- I think it needs to be at 500 to start up the chemo again. She has more levels tomorrow and then into the hospital for Thursday early morning. She gets her chemo 2 times per day, for the next 5 days and then comes home next Tuesday or Wednesday. Abby is very upbeat and is really loving her teacher! She gets about 2 hours of individual education three times per week. I saw her tonight and we played this really great game called Franklin. Bert got it for her. It is about the Franklin who takes a school bus and there are age appropriate questions -- well Abby did really well on hers and she had to help Sue and I with ours. Then we played Hahahaha -- for any of you who have ever played it -- Sue and I got laughing so hard, finally Abby said -- I have to stop before I go loco. Bert agreed, even though he was just listening from the other room. Thank you all for everything. I just know that your prayers and all your positive hopes and wishes are making a difference. Sue and Bert are spending a lot of time doing research -- AML is very rare in children one in one hundred thousand. Currently Abby is the only patient being treated at the navy Hospital. She is getting excellent care and we are very grateful for her doctors. If you have any information that you want to share or any suggestion, please let us know. And I am sure you have all seen the blood shortage crisis in the news. The blood banks get their supplies -- one donor at a time -- So your donation will help someone. Thanks so much and best, Karen Duncan

Date: 9/22/00
Hello everyone, Isn't that wonderful about Carmen and Alfred walking in the Light the Night walk for raising the awareness and need for leukemia research. Abby went for her bone marrow test yesterday and was supposed to be check in to the hospital for 6 days but her white blood count was not high enough. It was raised by about a hundred to 375 but needs to be 500 for continuing chemotherapy. So though they had packed for the duration, they came back home. The good news was that her bone marrow in the first slides that were viewed showed that it looked cancer free. So the preliminary test looks good. Bert and Sue both had blood taken for marrow typing. It would be ideal if one of them were a match for Abby. Abby and the family will be going back to the hospital on Monday for the chemotherapy and will spend the week there. This weekend since Abby's level's are up some, she can go out a bit, but has to stay away from crowds. So it may be a nice break overall. I guess that all the stalling out is why the docs said that the treatment takes 6 months. September 15 marked the first month since the diagnosis. Take care everyone and thanks you for all of your prayers and help. Karen

Date: 9/24/00
Dear Friends, Abby was not neutropenic this weekend which meant that she could come over to play on Sat. and for Sunday School today. We had a great time. She goes in tomorrow to start her chemo again. Please keep her in your prayers. Karen

Date: 9/25/00
Hello friends. We just came from seeing Abby at the hospital. Bert is taking the day shifts this time and Sue the nights. She is doing really well and was playing dolls with Sue when we got there. Bert was getting ready to take off so we had a few minutes to visit before he left. What a busy time the hospitalizations are. The teacher is even coming to the hospital. Her name is Mrs. Oyster and she is really wonderful and gives Abby her full attention and is very creative and prepares great lessons. Pastor Randy came by the hospital and visited for a long time today. He is Randy Orwig, the pastor of the church that I joined, though I have not been able to be very active at all. Abby went there with me a few times and Sue and Bert did too. They really feel comfortable with him and the church that is Tidewater UCC (of course -- where else would a UCC minister attend?). Tidewater UCC is a new church start in this area and is very committed to all of the things that UCC’ er's hold near and dear to our hearts -- there is a great spirit of expressing the love of God through Christ through worship, outreach into the community and a homeless ministry along with the building of a facility. The congregation has faced all kinds of challenges that the congregation has run into and faced with great courage over the past years. Anyway, at this point in my life it is very different to be among the inactive members and to be ministered to by a church that is reaching out, since I am used to being in that role. Pastor Randy brought Abby a whole bunch of cards from the Sunday School that the children made and they are all up on the wall in her hospital room. Being as isolated as Abby has to be and so much a part of the adult world, it means so much to have contact if not in person (usually she can't) but in messages from children so she knows that that world is still out there and that when she is well she can rejoin her friends. So many people have done so many things for Abby and Sue and Bert. I know that they are feeling delinquent in not getting out thank you's. Sometimes they don't even know the sender of a wonderful gifts received in the mail, especially from some of my eBay friends. I told them to relax and that everyone understands how hard it is to be in the midst of a emergency, one that seems to have no end -- and to think about getting letters out. Sue and Bert and Abby are all very grateful and will in time write. I tell them that for now they are doing what is the most important and that is helping Abby get better, and I bet everyone agrees. Thank you all for being such wonderful friends and blessings to them and to ABBY. Love, Auntie Karen

Date: 9/27/00
Hello everyone, There is some good news about Abby's condition. Her blasts are at 2% that is considered remission!!!! YEAH!!!!! If any of us had our blood tested at any given time, they would find that we have 2% blasts that are immature cancer cells. So that is the good news. The bad news is that she has gotten an infection in her ear and has a fever that is really bad when she is neutropenic. Her temp is 102.5 and she was going to be seen by an ENT tonight and I don't know what has happened with that. Last night was a really rough night for Abby and Sue, they were up about all night. Bert was with her all day today and all she wanted to do was lie down and be held. So now she needs to get well from this and sometimes it can take a couple of weeks. I sure hope that they don't have to stay that long again.I had my first time to give platelets yesterday at the RED CROSS. They said I had plenty so they took two bags. I asked what the sign on the wall meant when it said that the answer to the blood shortage may be double donations. I asked what that meant and the nurse said that they automatically take two pints now when it comes to platelets as long as the person had a strong count. They even play movies. If we can get 10 people to schedule to go in one week, we can get a banner put up with Abby's name and they make t-shirts for you with her name. I was really lucky because the man who runs the bone marrow program came down to talk to me while I was there and he spent a long time answering my questions. He said that he can help give information for other areas of the country.The policy of platelet donations is that if you give three times, they will test your blood for the bone marrow registry for free. Otherwise it is $81.00 to have it tested per person. That is why I keep urging all who are under 61 years of age to take advantage of any bone marrow drive that is sponsored. When there is a drive, they will cover the cost of the typing and you will be put into the national registry and if your marrow matches Abby's you could be her lucky partner down the road. I really want to be her donor, but I guess that being Gemini Twins doesn't qualify us. She was bone June 14 and I am June 13 -- so we have a Gemini poem that we made up about all the things that Gemini's like. Abby started to ask about her 6th birthday party and they decided to have a half birthday party this year. Abby is one who is always ready for a party.They are going through her 101 Dalmations, she has maybe 20 or so and each one has a birthday party and they have cake. Can you imagine Sue's patience? They are even marked on the calendar.A tip for men on giving blood. I understand that a study has shown that men who give blood and blood products reduce their risk of stroke and heart disease. They are not publicizing this info for some reason, I guess that they are afraid that people may lie on their questionnaires if they find that there is a personal benefit to giving blood. anyhow I thought that that was very interesting. The new cells that have to be produced because of blood donation are more pliable and a better texture and do not clot as easily. Pre-menopausal women automatically lose blood monthly that is replaced. I assume that post-menopausal women would gain the same benefit by donating blood. The other new thing that I learned in the literature about donating blood is that since the test has changed from an ear stick to a finger stick, they are turning away more women with low iron in the blood. They suggest that a diet heavy in iron is good for a week or two prior to giving. I went to my appointment at Patient First, my HMO which is also a walk-in where Abby has gone a few times and everyone knew when she was going to be a flower girl. They had her come in and bring all the wedding pictures from Adam and Melissa's wedding to show them. Anyway she is one of their favorites. One of the really wonderful lab techs there is 0+ and he has told me that he was going to go over to the Navy hospital and be typed (EX Navy) to see if he would be a compatible donor for Abby. He was over there giving platelets for her earlier this week and this week she will need them. One of them who had not know about Abby's leukemia today started to cry, and she told me that her son died at 3 from cancer. They nurses are planning to go visit Abby and bring her a surprise. I am moved by the compassion that is poured out whenever anyone hears about her illness. Life is so precious and we need to really protect our health. Have a great evening and please remember Abby in your prayers, she needs help fighting that infection! Blessings, Karen

Date: 9/28/00
Hello everyone, Our dear little Abby is having quite a tough time. She has a 104 fever that they are trying to get down. They do not know what is causing it, but it can be the chemo. Roger and I went over for awhile today during Bert's shift. He and Sue are changing off trying to catch up on a bit of sleep. When we arrived a home nurse of Abby's who comes to the house three times a week was visiting her in the hospital. Her name is Jessica and Jessica had AML and was telling Abby about it. She is such a wonderful person and Abby is very lucky to be surrounded by so many wonderful helping professionals. Bert has got it down so that he can mix the Tylenol in chocolate chip ice cream and Abby can get it down. She associates Tylenol with great pain and a sick stomach from when she had her tonsils out. It is very hard for her to take it, but the chocolate chip masks it and she doesn't even know she is having it.Are there 10 people out there in this area who want to donate platelets at the Red Cross. If we all go in the same week we can get t-shirts with Abby's name and they will put up a banner in the donation room with her name on it. Let me know. I think I have to wait 55 more days before I can go again, but it would be a great thing to do the week before Christmas when the blood supply runs so low. Have I got any takers? If we targeted the week before Christmas -- we could probably all go at the same time and watch a movie. Any how, please keep on praying for Abby, this is a tough time for her and she just feels so sick. Have a good night and I will write more as soon as I hear more. Love, Karen

Date: 9/30/00
Hello everyone, Just to let you know, I have 5 people (Gene, Tim B., Bert, Roger and me) who are planning to give platelets at the Red Cross the week before Christmas and am looking for 5-7more so we can get help Abby and other cancer patients over the holiday when the blood supply drops so low. A bonus is we can get T-shirts with her name to help raise awareness of the need for blood, and have a banner put up with her name on it in the donation center. I know the timing is hard, but maybe you have a neighbor or friend who would be willing, so just let me know. I am going to go ahead and schedule the week with the RC and will send out follow up info for everyone. Abby's fever is being controlled with some Tylenol and they have not found any bacteria and so they are attributing it to the chemotherapy at this point. I am sorry not to have written last night, but Sue got a migraine sick and I was with Sue for awhile and then drove her back to the hospital to spend the night with Abby, so Bert and his brother Al and nephew Benny could get back to the house. They were there without a car, having spent the day there so Sue could go home and get some sleep. Abby's Uncle Al (Alfredo) just was made Captain and past all his pilot tests!!!! He and his oldest son Benjamen (Benny) flew down and spent the whole day with her. She was really happy to have them there and she has a special relationship with Uncle Al who plays games with her all day when she comes. She was intrigued with Benny who she has not seen in quite a while and loves the idea of another big cousin. Hopefully Abby will be able to come home from the hospital soon her fevers could keep her there for a while longer, but maybe they will resolve themselves after the chemo last chemo which was during the early morning hours. There are three more chemo sessions left over the next months and three more Bone Marrow Tests and Chemo’s. Grandma and Grandpa Barker (Sue's parents) are arriving on Monday and Abby is really looking forward to seeing them. They are driving down from CT. Her cousin Andy (our son) is coming down the 10th or so of November. Thanks to everyone who has been so generous with emails, blood donations, cards and gifts, meals and prayers and all of the support that you are giving. It means so much to both Sue and Bert and cards always brighten Abby's day. Blessings and love, Karen

Date: 9/30/00
Hello everyone, Well, Abby is getting another blood transfusions and some platelets tonight, thelast I spoke with Bert. She is still pretty sick. I guess that her first set of chemo last month was unusually smooth and so this one seems pretty awful in comparison, but the docs say that this is more like it usually is. They are still hoping that Abby's temp will resolve itself and Bert did say that she was a bit better since she had her last chemo therapy in the wee hours of the morning. Alfredo and his son left this afternoon, so Abby will have to find someone else to play Candy Land and Franklin with....I wish you all a good weekend and I am going to chill for the rest of the night! Blessings, Karen

Date: 10/1/00
Hello Friends, I think Abby is coming home tomorrow from the hospital if all goes as is hoped. Thank God her fever has dropped and she is feeling much better, though still very weak. It was a real concern because there was a problem getting the blood she needed yesterday and they had to go outside the Navy hospital. Bert told them to take his blood, but they also do not want to give her blood from her parents at this time because if they turn out to be possible marrow donors, Abby could build up a resistance to their blood and reject a transplant from them. This is all so very complex, it is just mind boggling that families make their way through these things. I think it is the strength of the little ones like Abby and all of the others that keep the adults from crumbling in despair. Abby has three movies that she is saving to watch when she is better!!!! Isn't that a great spirit? I guess you can all tell that I am the VERY PROUD Auntie. My parents are coming and arriving tomorrow and will be staying with us. Abby was really happy to know they are on the way. I went in, the little trooper wanted to have Sunday School and Bert called so I headed to the hospital. Today was the day she completed her 5 week curriculum. What fun it is working with her on it! Wow this means that of the 6 months of chemotherapy, two are down and there are 3 more to go and 3 more bone marrow therapies. Abby is scheduled to finish all of this about Valentine's Day. I hear that there are 40 helper holders coming from Texas!!!!! Thank you! (A helper holder is a pocket that gets sewn inside of Abby's shirts or on a breakaway elastic band that goes around her neck. It holds the tubes that come from the permanent line in her chest and keeps them from dangling out the bottom of her clothing and getting dirty.) I had made a few, but she needed them in all her pajamas and shirts, etc.) Isn't that great that Iris found her mother-in-law to make all those and it only took a few days!!!! Thanks very much to all of you and I hope that you have had a great weekend. Love, Karen

Date: 10/2/00
Dear Friends and Family, ABBY is HOME!!! Sue and Bert too. And Grandma and Grampa Barker have arrived.Of course they stopped to see her on the way in and look forward to spending time this week with her! Thanks so very much to everyone for all the encouragement! Abby isn't planning on any more intrusive procedures until next Tuesday when she has a bone marrow treatment and spinal chemotherapy. Then she at least has 3 weeks off before the next round of chemo. Still looking for platelet donors and blood donors for Christmas week, Bert can't be one now so we are back down to 4 out of the 10. Let me know if you think you can join the donor party or talk someone else into it!

Date: 10/5/00
Dear Friends and Relatives- I have almost unbelievable news! Suzanne is a bone marrow donor match for Abby on 5 of the 6 possibilities! This means that of course they will retest Sue, but they said that at this point they will not look further for a match, and consider her the best match for Abby. It is highly unusual for this to be the case -- a small miracle! Bert is a match on 4 of the 6 and is a backup donor! They had their meeting today at the Navy Hospital and Sue and Bert will be traveling to Texas to San Antonio and to Texas children's hospital for second opinion's and getting a third from Duke U. If they decide to go ahead with a transplant at this time, Abby will take her next round of chemotherapy as soon as they get back and then they will head to Texas for 4 months for the transplant. Abby will stay with us at our house and my parents will stay here to help keep Abby busy until Sue and Bert are back from Texas. The other option would be to hope that Abby stays in remission and know that if not she has her mom as a donor. This is all far better news than any of us were anticipating -- and we are flying high with hope! Please keep on praying for Abby and Sue and Bert as they make these really difficult decisions! Since Sue faints at the sight of blood, please pray that she is given nerves of steel! She passed out when they took her blood to test for the marrow. She is ready and wants to do the very best for Abby. They are hoping for insight as they meet with the new doctors and get the second opinions from locations where they treat transplant patients. They will have to sift through all of the information and come to a decision about what they think will be best. So all I can do tonight is tell you how amazed we all are and very grateful for this moment of grace. Abby continues to be happy! We are up to 6 for platelet donors for the week before Christmas! Good going everyone, four to go! Thanks so much and God Bless you all, Karen

Date: 10/7/00
Dear Friends, Right now Abby is doing pretty well. She has to go in Tuesday to have a spinal chemo again and then after that suffers from headaches and nausea for 3 days. It is really hard on her, but fortunately they do put her out for the procedure. Back 10 years ago they did this without anesthesia. Abby had to get platelets again yesterday and it took a long time for them to come in again. Several people have asked about platelets and I though I would give another go at explaining it. The platelets are the clotting cells that help to keep a person from bleeding internally or from a wound. When one has leukemia, and goes through hemotherapy the platelet count becomes very low and bruising is frequent and dangerous. For example Abby got bruises all over the fronts of her legs from leaning against her stool to get up on her bed. A hard fall could cause a person with low platelets to bleed to death. People with cancer need to have apheresis platelets which means that they are all from the same donor. (Other people can have platelets that are extracted from blood donations and combined from different persons.) Cancer patients also have further HLA matching with platelet donors done to reduce the likelihood of reactions. Abby has had allergic reactions to blood and platelet transfusions and has to have medication to prep her for her transfusions. Platelets only last about a week after harvesting. When you donate platelets it takes about 2 1/2 hours. They take blood from one arm, it goes through a machine and the platelets are separated out and the remainder of the blood is put back in the other arm. In addition they also add some coagulant to protect the person for 24 hours until your platelets production reaches its normal level. A person is allowed to donate platelets every 56 days and can donate whole blood 3 days prior or after. they say that a 2 week span is better. There is a limit in the total number of times in a year that a person can donate and I think it is 6 times. When they took platelets from me, they took a double donation or 2 bags. They said that I had a nice high count. It is good to take extra calcium before and even during the donation. You can feel tingling if the calcium level gets low, but a glass of milk or two replenishes the system or some TUMS. During the holidays there is a critical need for blood all over the US. We know that Abby will still need platelets then and so will all of the other cancer patients. That is when the supply drops. the blood is shipped all over the country when needed if the person in need cannot get it from their local bank. Platelets are especially needed them because they take longer to donate. That is why I thought it would be a nice idea to target the week before Christmas to work toward a banner and shirts to raise awareness about leukemia and the people who suffer from it. People who are able to can donate the gift of life. Anyone who donates can get a card from the blood center to send to Abby and so she knows that you have given blood in honor of her. She was really tickled that Pastor Randy and her cousin Andy and I have given blood and though she doesn't know exactly whose blood she is getting it could be ours. I hope that everyone has a good and safe weekend! Take care and Love, Karen

Date: 10/9/00
Hi All, In Karen's absence as she will view her new granddaughter shortly at the hospital I will try to fill you in on the latest. Amanda Rose Duncan, wt. 6 lb. 15 1/2 oz, arrived on 10/8 (yesterday) at 4:11 p.m. I believe mother and daughter are fine. HOW EXCITING!!! Abby had a good day yesterday. Ate a BIG lunch. Had blood work yesterday a.m. and it came out so good Dr. had lab recheck it as she couldn't believe it was correct. Grandpa Barker did his best to fill in as Abby's Sunday school teacher in Auntie's absence. That's a hard "shoe to fill". She was thrilled to hear about the arrival of her adopted "little sister". Grandpa was pretty tired last eve. We all had dinner last night with Abby. She was bright eyed and wanted more of Grandpa B's adventures. Her adventures will to be continued today and she needed dressings changed and a tubby. Blood work was in advance of spinal chemo and spinal marrow testing Tuesday a.m. This is always a tough on as she gets headaches after. We all pray and support her in this hard thing to have to go through. Must sign off, someone is at the door. Love to all, KAREN'S MOM

Date: 10/10/00
Hi Everyone, As Karen and Roger are getting in quite late this evening, I will do my best to fill you in with Abby's latest report. Abby's inter-thecal this morning at the hospital went very well according to her Dad. She went off to sleep laughing with her anesthesia and woke up happy. Now let's hope she doesn't get the spinal headache from spinal chemo and bone marrow aspiration. Karen, Roger and Grandpa and I had planned to take care of Abby on the 17th & 18th of October (next week) here. Now the Dr's in San Antonio, TX want Sue and Bert to bring Abby along so they can evaluate her for possible bone marrow transplant or am not sure (could be stem cell transplant) Bert's sister, Carmen (Abby's Aunt Carmen) lives in Houston so will spending time with them also .Bert said this was all good news. As Abby's count is up and she's not neutropenic she can fly with them to TX. Right now they are waiting for the tickets Receipt of tickets will firm up definite date of their leaving for San Antonio. Bert sounded so encouraged. We'll have to send all positive vibes and give them all our support for their trip. Best wishes, Karen's Mom

Date: 10/11/00
Dear Friends, Thanks to my Mom, you got some news while I was off becoming a Grandmother. Roger and I took a fast trip to CT and took a peek at our first Grand-daughter Amanda Rose Duncan who Abby is adopting as a sister! Amanda weighed in just under 7 pounds and is a dainty little girl. She is a miracle!!!!! I am sure all grandparents feel that way! Anyhow her MOM and DAD are doing great and they are hopefully tucked in at 50 Robin Road by now and adjusting to their new life together. We are thrilled to say the least. They had a doctor stand by to collect the cord blood and it has been sent to Arizona and can be used by Abby if she needs it, and for Amanda's own future needs -- lets hope that she has no need for it. We are very grateful to them for their generosity and really wonderful planning on Adam and Missy's part for doing this. Like I told everyone last week, Sue and Bert and Abby will be going to Texas next week, on Tuesday to visit two hospitals and I will tell more about that after I talk to Bert. I want to get the details right. They will also get to see their Texas family (Bert's sister's Carmen and Iris and their families and her Grandparents). They are greatly excited about the trip. Abby is not neutropenic now and had a really wonderful blood reading on Monday. All levels were normal!!!! That means that she has more freedom to do things now as long as it lasts. Since Sue is a 5/6 match for Abby, they are going to be learning more about her options and the benefits verses risks of having a bone marrow transplant/stem cell transplant NOW as opposed to if she were to come out of remission. This is a huge decision for her MOM and DAD to make on her behalf. Please pray that they are able to be clear and to discern the best path for them to follow with the discovery that Sue is a match -- which in itself is very, very rare. A great gift!!!!! Bert and Sue have created a web page at the Caring Bridge that I was on tonight but noticed that the photo that was up is not available. I hope that you will take a visit to the sight and you can send them personal messages at the site. Isn't that great? I will be getting a group of my old emails ready to put up as history after editing it. This site will help them to keep up with more people and it is awesome to know the number of people who are out there that are caring for them and praying for them daily. Abby is a very special little girl and I believe that she has a lot more to offer the world in her lifetime and we are entrusted with helping her and all of the children of the world to achieve their potential. Right now Abby is doing very well. I believe that the power of prayer and the love that she receives from her parents and doctors and all of those around her helps her fight the cancer everyday. So far though this has been terribly frightening and challenging for everyone. We are told that Abby is doing better than most children do in tolerating the chemotherapy. I know that many of you have taken care of Abby through you prayers, though you have never even met her. I know that you are making a difference. Thank you very much and I pray that God may bless each and every one of you and that someday we can all meet. Wouldn't it be great to have a celebration of her wellness and get to meet all of the other people who have had their lives touched by Abby? And who have reached out and touched her life? May God bless and keep you safe from all harm, Love, Karen

Date: 10/12/00
Hello tonight, Abby is not neutropenic now and is able to go out as long as her blood levels stay OK. The date the Ortiz family goes to Texas has changed to the 21st and the itinerary is about the same first the Air Force Hospital and then Texas Children's hospital for the first and second opinions regarding bone marrow transplants. They will be back on the 26th and then Abby has to go back into the hospital for a third round of chemotherapy. Thanks everyone for your continued support and I hope that you have gotten to look on the Caring Bridge to see the photos that Bert put up of Abby. Have a great night. Karen

Date: 10/16/00
Hello everyone,
Abby is not neutropenic now and so she can go out a bit and have some fun. As you know the Ortiz family including Abby is going to be able to go to Texas for a first and second opinion on the bone marrow transplant options. They will be leaving on the 21st for San Antonio TX and then Auntie Carmen will take some time off from work and meet them and then take them to Houston to the Texas Children's Hospital. Since Abby was able to get out this weekend, her folks took her on a Hayride and to get pumpkins. That was fun and a tradition in her life. Doing the normal things of life can be so healing! On Sunday I took Abby's thank you card and a couple of photo's to church and the pastor shared them in the children's time. It was really nice to be back there again if for a short time. I came back because I did not want to disappoint Abby 2 weeks in a row. She is such a great little girl. We went to take my dogs to get groomed and then we ate at McDonald's and spent time learning about the creation story. Since it did not have to be a sitting in the house lesson, we took pictures of things that God created, like the fish in the tank at Petsmart and some hamsters and things like that. When we got back to my house after finally rescuing my very groomed dogs -- who Abby refers to as her brothers -- we had Sunday School. Abby wanted me to read from the Bible and I read her the first three chapters of Genesis, not once but several times. She was absolutely fascinated. She got so she could fill in some of the words and she loved it when God creates and looks at the creation and says that it is GOOD! What fun it is to have Sunday school with her! She is a real joy -- Today she had her first piano lesson. They found that her kindercare music teacher could come to the house to teach her lessons. She had her first lesson and was very happy about it. By the time her school teacher came she was a bit tired out. I hope that many of you have been able to get online and to see the caring bridge that Bert has put on. He had his physical today and is in good health!!! That is always good news. Thanks for everyone's support. I am going away on a little business trip for two days so I will not be writing Tuesday and possibly Wednesday. I am going to go on a conference for work to Charlottesville, VA for an overnight. I am sure it will be interesting. I tried to explain to Abby but all she could say was why.... I had to tell her I needed more money for us to eat at MacDonald's and groom the dogs. I will be back in touch soon. Take care everyone and keep on doing whatever you are doing on Abby's behalf because it is making her a little better each week! Love, Karen

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Wednesday, October 11, 2000 at 08:56 PM (CDT)

Hi to all and WELCOME to our Web site. This is my first journal entry and I wanted to start out with the email I originally wrote out to friends explaining the incredible change in our lives, the diagnosis of Acute Myelogenous Leukemia in our only child, Abigail (Abby). We have come a long way since this original email which I finally wrote out two weeks after her diagnosis.
I will follow this up with a consolidation of emails sent from Abby's aunt, my wife Suzanne's sister, Karen. She and her husband Roger have been a rock to us and a blessing to have in our lives. Don't know how we could make it through this without them. Karen sent out updates on our progress to friends and family with her email list growing daily. We decided to set this web site up to supplement those emails and give us another avenue to keep all informed of our progress. Keep us in your prayers and God Bless... Bert Ortiz, Dad to Abby.
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Hi everyone,
I haven't been able to get to talk to everyone and this is my first real
day back at the office. Doin' half days so I'm sending out an email to all
of you who I haven't talked to yet to let you know the latest from the
homefront. I'm also sending this to those of you who I have briefly
corresponded with so I can pass the latest update and to pass along my
sincerest thanks for your emails and offers of support.
As some of you already know, Abby (age 5 as of 14 July 2000), my daughter and only child, was diagnosed with Acute
Myelogenous Leukemia (AML), a blood marrow cancer, on 15 August. Unlike the
typical childhood leukemia, Acute Lymphocytic Leukemia (ALL), which has a
cure rate of around 85%, AML has a 40-50 percent shot at long term survival
(longer than 5 years). It is normally seen in adults and not in children.
I read a stat last night from the Leukemia Society that 1 in a 100,000 cases
of AML diagnosed, averaged over the last 5 years, was a child 5 years old.
Pretty rare. They tend to happen more in people over the age of 60. It's
not inherited but acquired. They have found increased cases associated with
benzene and radioactive exposure (Hiroshima survivors). They still don't
know what sets it off in some though. Abby has never been exposed to weird
stuff which has us racking our brains. As the mexican adage goes, "Caca
pasa".
AML has 7 different subclassifications which define her treatment. Her
particular subclass is M2 (Myeloblastic, with maturation) which means some
underdeveloped cells with mature cells. The good side of AML, if there is
such a thing, is that the treatment to bring it to remission is shorter.
Abby's protocol has her treatment lasting 6 months with a 5 day chemo
treatment once a month. It is a more intense chemo, but I'm here to tell
you that she has been tolerating the chemo pretty well. If she relapses,
she repeats the chemo regiment again. Bone marrow transplant only comes if
her chemo doesn't succeed.
She just finished her 7 day "induction" treatment last Saturday. I
have to say, after her chemo she looks better than she has in a month and a
half and is definitely eating a whole lot better. She had her tonsils and
adenoids removed 2 1/2 weeks prior to her leukemia diagnosis so she had been
through a lot this month. She's has O+ blood type which is pretty common so
that is in our favor. She still has her hair, which is amazing, but will
loose it soon and we're prepping her. She goes in tomorrow, Friday, for a
spinal chemo and another Bone Marrow aspiration. She will receive spinal
chemo because they did find cancerous blood cells in her spinal fluid and
traditional chemo doesn't penetrate the blood-brain barrier that well.
She'll get three more doses of that along with Bone Marrow Aspirations to
check her marrow's progress in redeveloping into a healthy state. It's
amazing what I have learned about this stuff in two weeks. It has literally
been like drinking through a 2 1/2 inch fire hose.
Yesterday we had to go in for platelets. We got a call from the doc the
night before saying her platelet count was low which is expected from the
disease and the chemotherapy. She was transfused with red blood cells
before we left the hospital the first time. We have an in-home nurse that
helps us with things and draws blood three times a week for the hospital
through Abby's new central venous catheter we call her helper. They put it
in on day three so now she doesn't get stuck all the time. Kind of hard to
have tubes coming out of her chest but she's getting use to it. We sew
pocket in the inside of her shirts and have a small "gunny" sack she can
tuck them in to as well. She met three other "cancer kids" and we talked
about "Make a Wish". Of course she wants to go to Disney World. We might
be able to do that in early spring. She just got approved for home bound
kindergarten through Chesapeake which is way cool. She gets this because we
have to limit her exposure while she's undergoing chemo. She virtually has
no white blood cells to fight infections and stuff, a condition they call
Neutropenia. So we have to be careful.
She has been inundated with gifts, support and family which has been
both a comfort and blessing, and of course it always brings a smile to her
face. I can't, and don't know how, to thank everyone who have helped us to
this point. It's overwhelming. I hope we're not spoiling her but I think
she already was anyway. Older parents are pushovers I think. I'm just a
sap. :-). It is amazing though on how quickly she rebounds from the stuff
she is going through.
Well that's the latest. Hope I didn't bore you. It kinda helped me
typing this all out. It still is unbelievable and I wish someone would just
wake me up from this. I'll try to let folks know as we progress through
this, but please, do not be offended if we don't touch base with everyone.
The folks at the squadron have been awesome in their emails of support
especially since they are out on COMTUEX! I can't thank them all enough.
My sister-in-law, Rev. Karen Barker-Duncan, who lives a mile from me has
been our main outside communicator and organizer. She is awesome. She
sends out daily updates to family and friends and if you would like to
follow us through this, you can drop her a line at mailto:Kebd13@aol.com and
she can add you to her mailing list. Keep us in your thoughts and prayers.
Thanks again and take care everyone.

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Monday, October 09, 2000 at 12:13 PM (CDT)

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