UPDATES
March 31, 1999: Doris completed the induction protocol. However, her marrow had not
recovered enough to definitively declare her back into remission. It has taken much longer for
her to recover from this induction, we think, for several reasons. First, Doris was only about 85
days post-transplant when she relapsed and subsequently got socked with more chemo. Only
BMT patients can empathize with what this might be like. Second, the induction protocol was
intensive not only from a chemo standpoint, but also with the addition of the monoclonal
antibody. After each 5 day administration of B43-PAP, Doris had severe problems with low
blood pressure, decreased heart function, and other symptoms associated with capillary leak
syndrome. These are the major side effects of B43, which are clearly stated on the protocol
consent form. Doris received the highest dose of B43-PAP in the study.
April 2, 1999: Doris celebrated her 13th birthday (at clinic) and also was Baptized at the MCV
Hospital Chapel by Reverend Ken Faulkner.
April 14, 1999: Bone marrow aspiration on Doris showed 90 percent leukemia cells. This
explains why her marrow hadn't recovered from the most recent therapy. This, according to the
oncologist, means that it is no longer possible to control this disease. She is having problems
with fluid in her lungs, increased heart rate (and decrease heart function), and low blood
pressure. We are told that this is a cumulative effect of all the therapy she's received. While we
entertain this as a possibility, we still believe that these life-threatening symptoms are from the
monoclonal antibody she received in March.
April 17, 1999: Doris' heart rate has slowed considerably and her blood pressure is normal. The
cardiologist said that if she didn't know Doris' history, she would read the echocardiagram as
normal. Another specialist stuck a probe into her lungs and obtained samples for testing. He
also flushed her lungs out. There are formal names for these procedures but you get the idea.
Following this procedure, Doris' breathing improved. Initial test for pneumocystis came back
negative. This morning upon awakening, Doris took off her oxygen mask to eat breakfast and
her pulse-oxygen level remained high. By noon she was not only off oxygen but transferred out
of the pediatric intensive care unit to the regular pediatric unit. She was up walking around with
no problems with fatigue as before.
During all of this, Doris received high dose Ara-C (three hour infusion every 12 hours X 4)
followed by a shot of L-asparginase. Her WBC fell from 7,000 on the 14th to under 2,000 today.
We hope the same thing is happening to the marrow.
April 18, 1999: As Doris' strength returns so too does her granite determination to fight this
thing for all it's worth. We are continually amazed at her fighting spirit. She ate pizza AND
cereal for breakfast.
April 21, 1999: We brought Doris home from the hospital Monday, April 19th. Although weak, she seems to have strength to go
shopping!! I am hoping the wheelchair we got for her a couple of weeks ago will get rusty from lack of use. She returned to the clinic today for count check.
She was hooked up to a portable chemo pump and will return to clinic Friday. This is a repeat of the high dose Ara-C she received less than a week
ago. Her WBC is down to 200. She received an infusion of platelets--all other counts were normal. But with her WBC so low, she has a tough road ahead of her with this second
cycle of chemo.
We would like to thank you all for your support and prayers!
We feel like a mountain was moved last week. But she's got more to go; she's still climbing!
April 27, 1999: Doris was admitted to the hospital Friday, April 23rd with a fever. This was expected. Over the weekend her blood pressure dropped and she was moved from
the regular pediatric unit to the PICU for closer monitoring. She was moved back to the regular unit Sunday after her blood pressure normalized. She received packed red blood cells, platelets, and albumin.
As of today, she is still being held captive by Dr. Grossman because her temperature keeps going above 100. Doris would not even look at him today because she was so angry about not being able to come home.
She was started on G-CSF (Neupogen) yesterday to stimulate white blood cell production (her WBC is now officially zero!).
May 2, 1999: Doris is still in the hospital and is feeling quite well and is up and about. The hospital has replaced their thermometers with new, supposedly more accurate ones. We don't like these new thermometers because at least once every 24 hours, Doris' temperature goes above 100. Docs have been unable to find
any type of infection. I have repeatedly told them that Doris does not get infections but they refuse to believe me. So they keep searching. Her WBC is 100 now after 3 or 4 days at 0. Her hemoglobin has held steady for awhile now and we're hoping this is a sign of marrow recovery. We expect a bone marrow aspiration will be done within the next week or so.
Our home page was singled out as Best of the Best in the AT&T Worldnet Community Port for the month of May.
May 3, 1999: Doris was discharged from the hospital this evening. She's feeling good and excited to be home.
May 5, 1999: Doris went to clinic today and received platelets. Her WBC is up to 300--a sign of progress.
May 8, 1999: A year ago today Doris was diagnosed with leukemia. But we aren't spending much time reminiscing. We're taking Doris to the hospital this morning as she has a fever and nausea (cannot keep anything down). She also has been coughing more of late. She wants to go to the hospital--a sure sign she needs to go.
May 9, 1999: Yesterday was intense. Chest X-Ray revealed a small infiltration (pneumonia). Doris began coughing more. Her WBC was 1,500 (!) but platelets were 8,000. During a platelet transfusion she had a reaction with bronchospasms and hives. This was quickly brought under control. She had a good deal of chest pain and more vomiting and was given zofran and morphine to combat it.
Today her WBC is 1,900 with a great differential! If you have been following Doris' story, you'll be glad to hear that her blood pressure and heart function are both doing spectacular. While the pneumonia is of present concern, her pulse-oxygen level is very good and she doesn't need oxygen.
Thanks to all of you who have signed our guestbook and offered encouragement. We eagerly check it everyday. Also, thank you for your continuing prayers.
May 12, 1999: Following the last update, the news has gotten steadily worse. Doris' WBC is 27,000 today and it is all leukemia. Apparently, the high dose Ara-C was not effective as we'd hoped. The leukemia has taken over now and she has bone pain in her ribs and her legs. She is on morphine for the pain and is asleep almost constantly.
Today Doris was started on Vincristine and prednisone with hopes that it might alleviate the bone pain and allow her to not be on the morphine as much. We were told that this regimen has few side effects. I now believe that the so-called pneumonia might actually be leukemia cells in her lungs.
A month ago when she was in such bad shape and the doctor told us there was no hope for a cure, well, we got our hopes up when her symptoms improved so quickly. We knew the Ara-C treatment was a long shot but as a parent you pin your hopes on anything.
So although this feels like the second time around with the doctor telling us Doris is not going to make it, we see this time it is really the leukemia affecting her (not toxicity from one of the drugs). Her condition is rapidly deteriorating.
I won't go into how we are all handling this. Suffice to say we are focused on giving Doris all the support we can while she is still with us. Darren
May 16, 1999: Today is my birthday and I got to bring Doris home from the hospital! What more can I ask? Her WBC is now about 19,000. Three days ago, on the 13th, it was up to 34,000, and she was sleeping nearly around the clock because of the morphine she was on for pain. Three days ago we thought she would not ever come home again. But all the while she kept telling her mother and me that she would. So she has made progress. Her bone pain has subsided at present but she is physically very weak.
At home she will have a portable morphine pump and oxygen as needed.
May 18, 1999: Went to clinic today. WBC was up to 46,000. Doris received platelets, magnesium, zofran (anti-nausea)
and an IV push of Vincristine (chemo). She starts oral VP-16 (more chemo) tonight. Doris was allowed to cut down on her 37 pills she's been taking daily since her
discharge Sunday. Now she only has to take about 27 pills. Early this afternoon when the doctor and nurse practitioner walked in and asked, "How are you
feeling today, Doris?" Doris stuck her head over the side of the bed and started heaving. (Good thing she hadn't eaten that quarterpounder I got her for lunch!) Anyway, I thought her demonstration
of how she was feeling was an appropriate reply to the doctor's question. Later, she underwent CT scan on her head to rule out
leukemia infiltrates. Everything thing looked fine on the CT. We return to clinic tomorrow for a spinal tap. Meanwhile, we are priming her with
Zofran and Decadron to keep her from getting sick from the VP-16 we'll give her tonight. We may have to hold her down as I don't think she
is too excited about all of this. Come to think of it, neither of us are.
May 19, 1999: Went to clinic today. WBC was up to 65,000. Doris received platelets and a spinal tap. Needless to say, it was not a fun day.
It is especially tough being the one at clinic in the worst shape. The family in the adjacent bed was celebrating a remission. We've done that several times as I recall.
Some of the lab test results weren't back yet and we were told that the doctor wanted to speak with us. But Doris and I decided we weren't in the mood to wait around.
So we disconnected from the IV and headed home. On the way out I told a nurse to call us if they need to tell us anything. We didn't even stop to make our next appointment. We desperately needed a change of scenery.
May 21, 1999: Many have emailed or called regarding my not writing an update yesterday. I did not overlook it, I just couldn't bring myself to do it.
Doris was as ill as I've ever seen her. I stopped being the "pill guy" because every time she saw me I had pills for her to take. She has always
hated taking pills and this week has seen too many pills. Also, she was vomiting up anything she ate anyway. So the pill dispenser laid himself off!
Yesterday a nice lady from Hospice came to the house. It was an emotional visit for Michelle and I and I'll leave it at that.
One of the problems with hospice when it comes to a child with leukemia is that there is no definitive demarcation in calling it quits treatmentwise. Doris is suffering and we want
to do what is best for her. Chemo is still necessary to help alleviate bone pain. Platelet transfusions can prevent bleeding. So this is somewhat contradictory to the hospice philosophy that one
should not attempt to prolong life. I know there is more to it than this, but just want to make a point.
Doris was admitted to the hospital today. She was in pain and nauseated. She insisted on walking out to the van so I supported her best I could with my hands on her waist. I have regularly lifted weights for over 20 years
so this was not difficult for me. However, emotionally it was way beyond my capabilities.
For over a year now we have prayed and focused our efforts to steer Doris clear of this dreaded outcome that is imminent. It is too much. At present, Doris is pretty much tuned out to her surroundings and only replies to our questions
with a slight shoulder shrug or nod of the head (Yet today as she lay in bed with a wet washtowel covering her face, I stuck a snickers bar in her hand and she opened it and began eating it.)
Michelle and I spoke with the clinic pastor about Doris' withdrawal. He described it as a natural process. He likened it to an elephant that leaves the herd in order to die. The energy and investment required to talk, think,
and feel is either not available or too much to maintain. We believe that she will not be coming home again. But her spirit will.
We have met so many wonderful children and parents at clinic that I just can't help wondering if we were chosen for this. It makes
no sense otherwise. Also, many of you who have contacted us (email/guestbook) are going through a similar ordeal. I can't adequately express in words what your prayers and words have meant to Doris and the rest of us.
The responsibility of fighting to eradicate cancer--particularly childhood cancer--falls to all those personally affected by it. Please
share with us, either through email or the guestbook, what you are doing in this regard. Thank You. Darren
May 22, 1999: Doris died this evening at 9:05 pm. I brought Oliver, Rose, and Heidi to visit this afternoon. We all individually hugged her and told her we loved her and other things like that.
Upon returning home I received a call from a doctor at MCV saying that Doris had vomited and it had infiltrated into her lungs and that she refused further treatment.
Since it is usually Michelle that calls, I knew this was bad. Oliver had gone off skateboarding. I took Heidi to our neighbors. And brought Rose
along with me. I learned that Doris could not speak during this episode but managed to scribble a note to her mother that said, "Let me go, I want to go." She pointed her finger upwards. She did other things that were special
and meaningful to us. Michelle, Rose, and I held Doris while she passed. It was terrible to watch her suffer and worse to watch her die. But we are relieved
that she will suffer no more. I don't know what else to say right now.
May 24, 1999: MESSAGE TO BATTLEFIELD MIDDLE SCHOOL STUDENTS--On behalf of the Gowen family,
we would like to express our sincere appreciation to all you who have written,
sent cards, and prepared special banners and photo albums for our daughter, Doris.
She died Saturday evening, May 22, 1999 at MCV Hospital in Richmond.
Doris kept every single item sent or given to her. Each time she received an expression
of thoughts and well wishes from you, she was truly grateful. Her 13th Birthday on April 2nd
of this year when you celebrated Doris Day at school and wore hats meant a lot to Doris and the
rest of the family. The signed birthday posters and album containing photos of this day were
beyond compare.
Doris fought acute leukemia for one year and two weeks. As many of you know, she briefly returned
to school at the beginning of the school year but illness soon pulled her away.
For Doris, being in school among friends was paramount. It hurt her deeply to not be able to attend school.
As you continued your journey this past year, attending school and other activities, Doris'
journey path went in a separate direction filled with frequent clinic visits and hospital stays.
She made a lot of new friends who also were (are) enduring treatments for life threatening diseases. She
suffered many setbacks but kept on keeping on. Her goal--the thing that kept her fighting--
was to rejoin all of you in a normal setting and to enjoy health once again.
Leukemia is a cancer of the bone marrow. Doris' treatments required drugs and radiation that caused
severe side effects, many of which changed her physical appearance. She was not pleased that one of
the drugs caused her face to get puffy. She was not pleased that other drugs caused her hair to fall out.
With continued setbacks and more intensive treatment, her body became weak. This frustrated her to no end. As her energy diminished it became difficult for her to maintain regular contact with many of you. You may recall chatting with her on-line or exchanging email in the past. The last three months of her life saw her doing less of this. If you called, sent letters, cards, email or an instant message on-line, and did not receive a reply from Doris,
please know that she did read all correspondence and was told when someone called.
But lack of response on her part was due to her difficulties with this disease. We think that she was concerned about
not upsetting anyone or causing others to worry on her behalf.
When we think of Doris we always think about her "friends." She loved to interact with people.
Thank you for being a big part of Doris' life--an essential part of what she loved most!
Darren, Michelle, Oliver, Rose, and Heidi Gowen
May 25, 1999: Doris' Obituary appeared in our local newspaper today (The ASK address is corrected below):
Doris Elaine Gowen, 13 year-old daughter of Darren and Michelle Gowen of Fredericksburg, Virginia, died of acute leukemia Saturday, May 22, 1999 at Medical College of Virginia Hospitals in Richmond.
Doris was a seventh-grade student at Battlefield Middle School in Spotsylvania County. She enjoyed collecting beanie babies and trinket boxes, listening to music, playing sports, and hanging out with friends.
Doris underwent a bone marrow transplant last December. Her sister, Rose, donated marrow for the procedure.
Besides her parents, she is survived by two sisters, Rose Gowen and Heidi Gowen; and a brother, Oliver Gowen, all of the home.
A memorial service will be held at 8:30 p.m. Thursday at Spotsylvania Presbyterian Church in Fredericksburg. A fellowship hour will be held prior to the service, from 7:15 to 8:15 PM.
The family requests that expressions of sympathy take the form of contributions to the Association for the Study of Childhood Cancer, P.O. Box 980121, Richmond, VA 23298, Richmond, VA 23298 or to the Leukemia Society of America, Virginia Chapter, 2101 Executive Drive, Hampton, VA 23666.
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