History

Journal History

Thursday, May 11, 2000 at 05:51 PM (CDT)

Our dear Leslie passed away this morning at 6:50. She had been sleeping in the family room with Kathleen and me, though certainly fitfully. At 6:45 Kathleen recognized that she was about to expire- I will not go into the details- so I ran upstairs and roused the boys. Christian came down yelling "I Love You Leslie!!!" and then she scrunched her eyes and passed away. We feel lucky that she left us at home.
The end came quickly, we thought. Tuesday night Leslie spent getting a pedicure from my sister, her Aunt Grace. They giggled and laughed for hours. Sometime that night she worsened dramatically; by the morning her vision had deteriorated, and she could no longer walk. All day yesterday, she got weaker and weaker. We do not think there was too much itching over the last day; we just hope we administered enough pain relief.
Last night, Leslie decided to give her mom her Mother's day present early- so even though she continued to talk about summer school and catching up with her classmates, she clearly knew the end was near. She kept telling us she was better than she was- like telling time from across the room- she got it wrong, but gave a good effort.
The last several hours, Leslie was not coherent and could not respond to questions. It was so gratifying when she clearly heard Christian calling to her. Indeed, last night the boys were taken to McDonalds, but Leslie wanted them back home- said she needed some entertainment. Our children's love for one another makes us very proud.
We have scheduled the funeral for Monday, May 15. It will be at 2pm at St. James Catholic Church in downtown Vancouver. The church holds lots of people. Leslie went to church with us the past 3 weeks and really enjoyed it, as we did- I had envisioned her getting married there many times, but never this.
MZ

Sunday, May 07, 2000 at 01:42 AM (CDT)

Leslie had 4 more days of radiation this week, got platelets a couple of times, and got red cells on Thursday. Her blood counts seem to be a bit better; a scenario I had not expected, so perhaps a glimmer of hope there. On the other hand, she was experiencing back pain today, and this was extremely disquieting. This was the first symptom when she relapsed last February. As you know, we are hoping that the marrow has not yet been infected in the hope that Graft vs host can overcome the cancer in her organs. The back pain may signify that we are too late- not that the GVH scenario was ever presented to us as much of a hope. We will need to keep an eye on that, because if the GVH does not work, we run the risk of making her even more uncomfortable in what the doctors refer to as her final days. I still think they have it wrong. Nevertheless, we are using lots of pain medicines to keep that at bay. We do not have any ammo against the itching. Due to her decreased liver functions, she has enzymes residing below the skin causing tremendous itching and for that we have no relief to offer. A good night's sleep would be awfully nice for my gal.
Leslie went to school for half an hour on Monday and really enjoyed herself. As you can tell from the guestbook, she also attended a social in her honor on Thursday. It went really well, though her energy flagged after the first 30 minutes. That is not her preferred environment- she desperately wants to see friends, maybe a couple of fellas too, but she does not want to be the girl with cancer. She just wants to be Leslie. So... the attention is somewhat awkward for her.
Thanks for all the feedback on USANA. Ultimately I did not pursue it far. Basic nutritional info is well covered by my beautiful bride- though I did order a product called MGN-3. We get it on Monday. I think Kathleen thinks I am being a bit silly, but I liked what I read about it- boosts the immune system through the production of a certain type of white cell- they are killer cells. Anyway, it is not exactly your run of the mill FDA approved regimen, but any port in a storm.
Leslie continues to get out frequently, though with decreased energy. Baseball games sound too taxing at this point. car rides are still great. I've been running errands with her for many months now; she knows as much as I do about baseball sponsors ( my responsibility with the local Little League- we mail almost nothing because dropping off forms gives us a little action) I've found reasons to go to the photographer with info twice now- they think I'm really into it I suppose.
We are scheduled for radiation on Monday, and then perhaps a final on Tuesday. Kathleen and I think we'll decline both- it does not seem to be helping the liver, and it is clipping the top of the right kidney, which cannot take any more. Indeed, the liver may have had too much already- truly we just hope that is a concern we can have. That would mean we got out of this somehow. What the docs must think of us. They probably just shake their heads.
We recognize we are looking for miracles, in the plural, but then the last 2 years seem so other-worldly, why not?
MZ

Sunday, April 30, 2000 at 11:15 PM (CDT)

We had a very nice weekend with Leslie. She felt good a majority of the weekend, albeit with some heavy doses of painkillers much of the time. Kathleen tells me most adults would be out on her meds. I drove Leslie with a couple of her buddies to the mall on Saturday, then we went to a restaurant. Her friends were very gracious as they seemed to understand when Leslie tired easily. Today was spent in the front yard or inside playing cards with my parents.
We go back for radiation tomorrow. She feels that the itching is somewhat better since we started, though she was saying today that it was getting worse again- so she is anxious for tomorrow. I sure hope the benefit lasts longer than a day, because she can take only 3 or 4 more days, then her liver is done for life!!
The environment around the house is primarily positive, though we sometimes fall into lapses of sorrow. If I could be more detached, I think Leslie's approach might seem interesting. Saturday afternoon she and Kathleen were spending some sob time on the couch, Leslie telling her mom that she did not want to leave her. Then, within minutes, she was reading her middle school newsletter and said she planned on joining Alpha next year- some sort of school club. Truly, her conversation, 98% of the time, is very forward looking. No other way to be, I suppose.
I read an account of a woman suffering from lymphoma who used a regimen called USANA with, according to the article, great results. The concept is nutritional in nature and essentially aims to create healthy cells faster than disease can tear them down. I searched the net last night and only found pyramid marketing info not really detailing it's efficacy for someone in Leslie's condition. If anyone knows about this stuff, let me know. I have an informational tape designed for docs, but it does not cover the ground I hoped it would.
In many ways Leslie is physically better than in months. No fever, no shakes, adequate energy, great spirits, marrow making lots of cells and engrafted, HHV6 nowhere in sight- Kathleen keeps pointing out how great everything would be if only a little of that leukemia had not survived. We knew Leslie was not in remission prior to transplant, but we had hoped the total body irradiation had done the trick.
Leslie went to church again with us today, though a couple hours later than our normal time. It feels great to have her singing in church, though my parents hogged her at the other end of the pew.
Hug your kids!!
MZ

Tuesday, April 25, 2000 at 11:25 PM (CDT)

We met with Leslie's docs on Monday; the traditional medical community does not offer lots of hope. We were glad they were honest with us. There are, indeed, methods to try, but they stand a far greater chance of being in ICU within hours than success against the cancer. We determined we would pursue two options. We will get radiation on the liver this week- actually got some today- in an attempt to ease some of the immediate liver problems. Leslie has tremendous itching and sporadic, but very intense, pain from this organ. We think the radiation can help. We will also try the graft vs host idea, though clearly the docs do not believe this will work. To their credit, they do not discourage us. Leslie is keenly eager to fight on; conversation is very long term oriented.
As many of you know, we had considered getting the family away for some quality time- a vacation of some type. At this point, Leslie does not feel good enough to really make this an attractive scenario. She does feel really good for several hours at a time, but when the pain comes, it is really intense.
Leslie has a good friend, Sara Lawson, working in Uzbek with deaf children. Sara fashions hearing aids; fifty percent of those she helps hear well immediately. Leslie wants to send all the money she gets this year to Sara. She asked Kathleen for odd jobs to make some money. For those of you who have seen her about recently, you can imagine the limited number of jobs that covers. Anyway, maybe you had to be there, but she has no intention of going anywhere soon. (BTW, so many of you say such gracious things about us- it is the Sara Lawsons of the world that make you feel insignificant. She was Leslie's primary nurse back in 97- they clicked the moment Sara walked in the room) Anyway, my point is that your prayers for Leslie's recovery jibe with her goals. She has no intention of going without a fight. I find myself crying too much when I am near her, I fear, because that is not the direction she is going.
I realize more and more each day how lucky I am to spend time with her. She is the most comfortable person in the world with whom you can spend time. She goes everywhere with me in the car and is so much fun. I feel selfish because frequently only I get the benefit of her sense of humor.. Anyway, enough for tonight. More radiation tomorrow.
MZ

Sunday, April 23, 2000 at 11:00 PM (CDT)

We are sorry that we haven't updated sooner. Leslie did not have the bone marrow aspirate or the lumbar puncture on friday as scheduled. Both of these procedures, especially the former, cause her much pain for 1 to 2 weeks. Tomorrow, Matthew and I are meeting with Dr Johnson to discuss Leslie's course. We need to find out the results of the Cat Scan, if radiation is a possibility, etc.
On friday, Leslie had labs drawn. Although she received platelets, her CBC results were adequate with no abnormal cells seen. All of her liver counts were all better than previously. We left very happy.
We have had a very special weekend together. Leslie wanted to go to both her brothers' baseball games. This was not an easy task for Leslie, as just getting into the car was painful for her. Despite the incredible effort, she really enjoyed watching the games. Leslie went to Mass with us today. It was the first time since Ash Wed. 1999. We colored eggs today (we were a little behind!), and had an Easter egg hunt. Although we had a very beautiful
day, Leslie has had quite a bit of abdominal pain, which she describes as severe. The pain pills didn't seem to touch it most of the day. The good news though is no pain now!!
Again, we are so very grateful for the love and prayers. We can feel your arms around us. Continue to pray, pray, pray. We will update again soon.

Wednesday, April 19, 2000 at 11:22 PM (CDT)

We got the call this afternoon regarding Leslie's diagnosis. It was perhaps worse than we had feared. We had come to anticipate cancer, which it is. It is A.L.L.- the same type of leukemia Leslie has had. We had anticipated some other form of cancer- a doctor had previously alluded to a type almost exclusively found in patients subsequent to liver transplants. With the great blood counts Leslie has had, we were really surprised. Leukemia usually presents itself in the blood. As well, she has had many lumbar punctures for the HHV6 treatment, so that test also might have revealed the ALL.
We really do not know the long term plan. Dr. Thomas suggested a bone marrow aspiration and another back poke this Friday. We want to find out if it is localized in the kidneys and liver. If so, perhaps radiation is an option (or not, we really have not run that idea to ground with the proper docs yet- she has had lots of radiation already). Another thought, if it is not in the marrow, is to encourage some graft vs. host disease in the hope that the new marrow will get it. Right now, that seems like the only plausible thing to try. Leslie seems to favor doing the tests; Kathleen and I were batting around the idea that it may not be worth the discomfort. We are not sure what changes based on the results. Given that Leslie is more than willing, I suppose that is the road we take (I tell her she is an excellent driver- ya know, like rain man.) BTW- I let her drive her mom's car around a parking lot the other day- very slowly. She liked it bunches.
We really do not think the medical community is going to be able to offer many great options, though we know they will try. I feel that, ultimately, Leslie and God have been primarily responsible for past successes and we are just hoping they are ready to work hard together again.
MZ

Tuesday, April 18, 2000 at 11:18 PM (CDT)

Still not much news to report. The surgeon came to see us this afternoon; told us that the biopsy did not seem to indicate an infection. Some type of easily treatable infection had been our biggest hope. Leslie was in the room; we really did not discuss any other possibilities. We continue to hope and pray for the best- just not sure what that is right now. We sure know what we do not want it to be. I always assumed a cancer was rather easily identified.
We brought Leslie home shortly after our consult. She let the chap know that getting home in a hurry was her priority. It was sort of comic really. Yesterday he came to intro himself; Leslie was in bed with her back to him. She apparently was paying little attention, then as he prepared to leave she shot up and said "are you the surgeon?" He responded "yes". She then proceeded to let him know she would be staying one day only. He said ok as long as vitals are good and you are eating well. So she got what she wanted in the short term.
Weight has dropped 7-8 lbs. in the past week. We bumped up the TPN again, and Leslie ate well this afternoon. Much pain, quite a struggle to walk to the bathroom. We've told Leslie it is really important over the next several days to increase activity daily. Of course she will. That is her strong suit.
We are counting on some answers tomorrow.
Liver counts, of course, still lousy as we do not know what to treat.
MZ

Monday, April 17, 2000 at 10:29 PM (CDT)

The exploratory surgery was a success today to the extent that they got a piece of the liver to biopsy and got her closed, awake , alert, etc. We do not have results yet, so the suspense continues for us. We hope to hear early tomorrow, but Kathleen tells me it could even take until Wednesday. Of course, we are terrified of the prospects of cancer, but are in a hurry irrespective of the diagnosis because we need to get on top of whatever the problem is ASAP. She is quite yellow- my own little chiquita banana. Whatever the issue, we need it treated soon. They did a CAT scan prior to surgery- the cutter said he saw the spots in the kidney and liver, but not in the pancreas- so I hope he's right. They didn't biopsy the kidney because it is hard to get to, bleeds lots, and looked like the same problem anyway. Got several units of platelets during the procedure and a couple units of red. Thank goodness for blood donors!!
Leslie's gut hurts lots, but she was in good spirits when the boys and I left the hospital this evening.
Kathleen briefly had a patient last week subsequent to a bone marrow harvest. One of the recovery room nurses asked her how she decided to get on the list. Said she was inspired by a girl in Vancouver named Leslie. Her marrow is going to a 14 year old boy. I know lots of you reading this were involved that day.(last April 24- where did the year go?) I know that 14 year old boy's parents would say THANK YOU to all of you.
MZ

Sunday, April 16, 2000 at 10:26 AM (CDT)

It is so hard to know where to start. The great new is that Leslie's bone marrow has been making wonderful cells. Her white cell count is 3.6! and her platelets were up to 31k and hemoglobin 9.8. The CBC counts were all terrific!

Although Leslie has had abdominal pain this week, yesterday she felt better than she has in over 7 months. My Leslie was full of energy all day. She went to the ball field with me to watch Christian's game. We sat in the outfield so she wouldn't be around other people. We had a wonderful time. Since we were farther out, we didn't always know who was up to hit. So Leslie walked quite a ways (again to avoid people), to tell her dad (the coach) that when he was giving the boys encouragement if he would say the boy's name. By the time she came back she was tired, but happy with herself. She was a joy all day. It was so special to have her feeling well. The terrible news is her liver functions have continued to go in the wrong direction, even after starting steriods. They instituted the steroids, because they thought it was GVH (graft vs host disease). We called on Thursday, relaying how concerned we were. Her liver counts are sky high! She is very jaundiced (bright yellow), and her skin itches (from the bile salts). A GI doc was called in, and an abdominal ultrasound done. There is thickening of the liver, kidneys and pancreas. Nodules were seen on them.
There has been much speculation about what is causing it...all of it bad. Leslie will have an exploratory lap and biopsies taken tomorrow. We are holding are breath. Please pray. We are very scared. Thank you for all your wonderful support, love and prayers. Please pray for our beautiful Leslie.

Saturday, April 08, 2000 at 10:24 PM (CDT)

Leslie continues to feel reasonably good, though nowhere near as perky as last week. She missed her Mom terribly; I think this contributed to her physical ailments.
Mid week Leslie's liver functions deteriorated significantly- they went from normal to 3 times the appropriate levels. Her bilirubin count is 6.9- normal high is 1.2- ok, worse than 3 times. Meanwhile, her kidney functions got worse again. The whites of her eyes are really yellow (liver), but otherwise I do not think these issues have affected her in ways she can detect. We kicked up the FK506- doubled it- to help the liver (GVH) but that is probably what negatively impacted the kidneys. At least, that is my theory.
Got an x-ray of her foot; no broken bones, but still very painful to walk on. The nurses took every opportunity possible to inquire "now how, again, did Leslie hurt her foot?" Either they really like to rub it in or short term memory is a major problem. Also got platelets 3 times this week and got red cells yesterday.
Heard back on the spinal tap- negative on the HHV6- Yea!!!- so cut way back on the gangcyclovir. That should help the marrow and allow little Leslie to make more of her own blood products.
Leslie has been wearing a jester's hat my Dad sent me. She loves it. I turned him onto a web site- The Motley Fool- and now she has the hat. I attempted to point out that the hat was intended for me, but this notion is apparently difficult to grasp subsequent to a bone marrow transplant. I continue to learn.
Overall, a good week, I guess, as the negative test result was huge. Nevertheless, the kidney and liver issues are troubling. We cannot wait for the boys and Kathleen to get home tomorrow night. Leslie has made it abundantly clear that I do not provide an adequate level of entertainment; indeed, I think Momma's nurturing is missed too.
Have a grateful Day!!
MZ

Sunday, April 02, 2000 at 07:29 PM (CDT)

The week started very poorly- Sunday and Monday were bad days- went in for platelets both days and felt awful. The week sure turned around then.
Starting Tuesday, Leslie started feeling a bit better, and she has had several great days now. She is eating much better; we are planning to cut the TPN in half next week. We have also been able to get outside for walks as she has so much more energy than recently.
Unfortunately, she was injured about an hour ago. Taylor and I were playing catch and Leslie wanted to join. I tossed a couple baseballs to her and she caught as well as ever (not well, but a few), so she decided to show her mom. The next one hit her in the foot. We now have ice applied as, of course, we are worried about bleeding. We all know who the bad guy is. She is being a real girl about the whole thing.
Leslie's chemistries also improved this week. The kidney numbers are still too high, but seem to have leveled. The white count continues to hang around 2. Also, we started the gangcyclovir- twice a day, or as our nurse says, "B.I.D.". Leslie got another back poke on Wed. We'll find out Tues how the HHV6 looks.
Kathleen is taking the boys to Texas to visit her parents this week. The boys are on Spring Break. I really recognized how much better Leslie is doing when I realized that the vast majority of the directions regarding their absence revolved around Leslie's care of me, ie. watch Daddy's junk food, make sure he doesn't lose his credit card, only one soda a day, etc. I am apparently high maintenance and not very trustworthy.
We are so happy about Leslie's condition. We feel God has blessed us again.
MZ

Saturday, March 25, 2000 at 10:23 PM (CST)

A mixed bag again this week. Leslie needed platelets on Mon, Wed and Fri. We have progressed to needing only one unit at a time, so that feels heartening. We are also quite excited that the white count gradually is improving. She got up to 1.9 on Wed, though Friday's dropped a bit. Nevertheless, after weeks of being at .6 or .7, we feel we are on the right track in that regard.
We are very worried about Leslie's kidneys. Since we switched from cyclosporin to FK506, the creatinine level has been increasing, signifying renal distress(BUN also elevating). We saw a renal doc on Monday; definitely took a wait and see approach. Wednesday's counts were then significantly worse- 1.7 vs high normal of 1.1. Kathleen cannot sleep at night because of this( I tell her I sleep so well due to a clean conscience).
Kathleen took Leslie into the emergency room on Thursday night. She was very dizzy, even when prone. She truly felt she might fall out of bed, so she was even dizzy when prone. Turns out she had a very low hematocrit- 5.2. Got red cells.
We cut back the FK506 from 4 mg to 2 mg per day. We are hoping to relieve the kidneys, but are watching for GVH. There is some- hopefully not too much.
Leslie feels horrible just about all the time- even after she gets her tank filled. We are attributing this to the kidney problem. She also seems to have developed a bit of the shakes again- not supposed to happen with the FK506. Hoping the HHV6 has not returned. The docs will put her on gangcyclovir as soon as her white count is high enough, so we are hoping it stays relatively dormant until that time- and afterwards of course.
We are considering a request to go back to the cyclosporin. We have been educated that both it and the FK506 are vaso-restrictors and act upon the kidneys in the same manner, yet we did not have these problems previously. I'm not sure the renal guy believed me when I told him this, though the records make this self-evident.
I am really pleased with Leslie's heart rate at the moment. It has been 160 all week, or at least til the red cells came in- now down around 100. BP has been good too!
Praying for kidney improvement and no HHV6- How bout you!
MZ

Sunday, March 19, 2000 at 07:58 PM (CST)

I want to thank all of you wonderful family and friends for all your love and prayers for my Leslie. Thank you for persevering! Also, I wanted to thank Chinook Elementary (the boys' school), for responding to my inquiry on doing a fund-raiser for the Leukemia Society. Dr Mary Yonek, the staff and Ptsa have been so supportive!!!!!!!! I have been reading several children's websites, who have leukemia and subsequent BMT's at Duke University. The suffering of these children are great. We need to find a cure!
Leslie has had a better week! Her mouth sores continue to heal. She is starting to talk a little bit...we can't wait until she can talk our ears off! Her blood counts are getting better! Her white cell count is 2, which is exciting!! However, it is partially up because she needed to receive a large dose of steroids this week. She received platelets on Mon, Wed and Friday. On Wed, Leslie had a major transfusion reaction, which involved dramatic swelling of her head, neck and lips. She had a bright reddened rash and difficulty breathing. After benadryl, solumedrol, epi and much time, it resolved! On friday, she was given steroids before the platelets to ward off any reaction. She had no problem. She received packed red blood cells on Tuesday. As Matthew had indicated, she was switched to FK506 for the GVH. It is working really well...her labs look great and no rash. The only problem is it has elevated her BUN/creatinine levels, which determine her kidney functioning. Bummer! We have given her extra fluid in her IV to help, but to no avail. She usually has a headache once a day, which can be from the FK506. Her blood pressure is good! Leslie will go to a renal doc tomorrow to see what we can do. She is starting to drink about 2 to 3 cups of fluid a day, and several bites of oatmeal. A clarification on the Herpes 6 tests. The qualitative test showed the herpes was present. The quantitative test showed the herpes is less than 10, which is considered negative. There are differences of opinion what antiviral Leslie should be on and how much, and when it should start. Leslie feels hot right now, but noone wants to take her temperature. We know she has a fever: we don't want to even think it is the herpes. Please make it your number one prayer for Leslie: the herpes will stay dormant and that she can continue to make progress. Leslie is still very sad, yet she has had brighter spots this week. She usually has no energy, but now she has sparks!! She wanted me to paint her nails green for St Patricks Day. She also wore one of my green sweaters and a shamrock pin! She looked great!

Monday, March 13, 2000 at 11:26 AM (CST)

Physically the past week has been a week of progress. Leslie has been drinking a bit of milk daily, a protein drink most days, and yesterday had several bites of oatmeal. We also feel that her health is improving. Though the mouth is still bad, the tongue is the only really bad part. The sides of her mouth seem much improved. The PRC test on her spinal fluid came back negative on the HHV6. A negative finding means a count of less than 10. Ten what we do not know- we do not know what the calibration scale is, but it seems good. Also, the shaking in the hands may be gone. It seemed much improved yesterday- not up today yet- so perhaps the FK506 replacing the cyclosporin achieved that result.
Leslie's counts were better each time we went in last week- we were in Mon, Wed, Fri. She now has a white count of 1.5. Still lousy, but beats the heck out of .6!! She needed platelets each visit, but her platelet count, again, was slightly better each time. We think the marrow is recovering.
Our most problematic issue of the week was one we have not dealt with before. Leslie had several days of deep discouragement. She can become indescribably sad. I have been utilizing the "Universal Reaction to a Female Crying Method", or URFCM, "Shut Up and Hug". (for all you young fellas out there- learn it soon- you cannot solve all problems and are not expected to) Anyway, we are hopeful this will pass quickly as we really do feel we have turned a corner- a comment I have made just about daily for, oh, 6 months. We also are figuring that this is a normal stage and are trying to treat it as a loving supportive family would any normal occurrence (without the teasing). The boys have been awesome and most helpful. We go in tomorrow and Christian and I are hoping for a white count of 2.0. Christian is captain of the white count police. First question in the door after school every day.
MZ

Saturday, March 04, 2000 at 06:17 PM (CST)

The problems referenced last week with Leslie's mouth continued to worsen early in the week. I believe Lelsie was in more discomfort on Mon- Wed than she has ever been. Looking in her mouth was like looking in a pool of blood. She got two units of platelets midnight Sunday night and then 2 more Tuesday night. One more unit on Thursday, then 2 more units of Friday. She also got 2 units of red blood on Monday. It was not a good week. She also got another spinal tap on Friday- hoping the HHV6 is gone. We stopped the foscarnet on Monday as well as the neupogen. The neupogen did not seem to be encouraging more white cell production as hoped, and the platelets and red were being severely limited. The foscarnet was stopped because the treatment was appearing worse than the disease. We need her mouth to heal, and think the foscarnet was perhaps causing that problem.
The worst part of this little episode is that Leslie cannot/will not talk. The pain is too great. She is becoming quite adept at making hand signals. She is so quiet that you get the feeling that she is mad at you- ever gotten the silent treatment?- that is what it feels like. (Right now my dad is shaking his head going "whoo boy, it is BAD!!!)(Sorry Mom-little bit of humor).
We also had a shift in medication. Leslie was taken of the cyclosporin and put on SK506. Also called tacrolimus. We are hoping that the tremors in her hands will then go away.
We get the results of the spinal tap on Tuesday. We REALLY want to HHV6 to be gone.
Still has fevers constantly. Don't know what to make of that.
MZ

Sunday, February 27, 2000 at 04:30 PM (CST)

We think Leslie is feeling a bit better overall- perhaps her body is adjusting to the foscarnate. She has only thrown up 3 times this week, so improvement on that front. One really bad development is her mouth. Her entire mouth seems like an open sore. Hurts to drink water. On both Tuesday and Friday, she awoke with blood dripping from her mouth. On Friday, she woke and saw blood on her bra; thought she was bleeding from her central line (she has a 2-port hickman in her chest through which she gets her IV's). Much relief when we realized it was dripping from her tongue. Got platelets both days. The tongue is worse today, so obviously no nutrition orally.
Counts continue to be bad. We are expecting to need red cells when we go in on Monday. Hopefully the platelets from Friday will still be around; they tried to get her fresh ones since Tuesday's did not last.
The tapering of the cyclosporin continues to go well. We are down to 225 per day from 375. The cyclosporin suppresses the immune system; we are REALLY hoping it will be free to battle the HHV6 very soon. It would also be nice to see her white cells able to heal her tongue.
No news on the last spinal tap results. We learned on Friday that the fluid to be tested had been lost. A lab in Seattle is the culprit. OHSU had a back-up frozen sample; hopefully we will hear by Tuesday. We are anxious to get off the foscarnate.
Leslie is hooked up to some form of IV 21 hours per day and is quite ready to be more mobile. Getting rid of the TPN would be a great advancement, but with the mouth situation, that appears distant.
Leslie is very tired; understandable with the low red counts. As we mentioned earlier, the neupogen shots are designed to stimulate white cells, but at the expense of platelet and red cell production. We feel very fortunate that we are not seeing signs of Graft vs host. Low-grade fevers persist- 12 weeks and counting.
MZ

Monday, February 21, 2000 at 03:13 PM (CST)

Leslie had a comfortable weekend. Not as much nauseau recently, though had an episode this am. Started getting shots nightly of neupogen to increase white cells; the trade-off is that she diminishes her production of red and platelets. She did not seem to be producing much anyway; hopefully white count will be higher when we go in tomorrow. Last count of white was .7; very discouraging to be so low this far out from transplant. We are really worried about getting another bug. Leslie has been saying frequently that she is ready for Dakota (our little yellow lab) to come home, but that still seems distant.
Fevers come and go. Great today, but up to 102 yesterday. Kathleen and I decided that her white cell production somehow increased her fever- all those new cells fighting infection. Probably wishful thinking.
As we've mentioned before, the foscarnate does not make Leslie feel good, though the shaking continues to improve, I think. Still not able to write or hold a glass, but getting close. We really need to communicate with her school; no work has been turrned in for so long- Leslie is pretty bummed. We probably need to investigate a plan B. She REALLY does not want to fall behind her class, but she is really behind. Kathleen and I clearly recognize the insignificance of this in the grand scheme of things, but it is most important to Leslie. I figure it is a good sign that she cares so deeply.
As usual, Kathleen and I have a different perspective of how Leslie in doing in total. I feel we are better off than 2 months ago; my beautiful bride would disagree. In any case, we feel we are making progress- the spinal tap on Thursday showed half the white cells compared to the previous test- less white hopefully means less needed to fight the virus. We will not get virus results til tomorrow. She has very little pain from the back poke- usually hurts more. Dr. Thomas knows they hurt her alot and seemed really pleased with how easily he got to the spinal fluid this time. We'll need to thank him tomorrow.
MZ

Wednesday, February 16, 2000 at 10:25 AM (CST)

For those of you who read yesterday's entry, Jenna doesn't have leukemia!!!!!!!!!!!!!!!! Her white count is up to 3.5, and no blasts were seen. Her platelets are better too, and Jenna feels much better. Thank you for your prayers!
Leslie went to the hospital yesterday for counts. Her white cell count is 0.9!!! and her platelets are also too low. She will go back today to receive platelets, and then tomorrow for a lumbar puncture. Since the herpes #6 was found in the CSF, they need to check to see if the antiviral is working by doing another LP. The antiviral is making her so very sick with much abdominal pain, nausea, vomitting, and diarrhea. Leslie's temperature had been working its way down; however, it went up to 102F on Sunday. Since then it runs 100.6 to 101.6. With her white count so terribly low, it is vitally important that she doesn't pick up any other opportunistic infections.
Please pray that the LP shows no signs of Herpes #6 , her white cell count can get better, and for her body to begin to heal. Thank you so very much for all your constant support, love and prayers. Pray for Leslie.

Tuesday, February 15, 2000 at 10:29 PM (CST)

As Matthew is fond of saying, I am mouse impaired, and tonight was no exception. I was in the middle of explaining Jenna's plight, when I accidentally added the journal entry. Please go to the history for more details, but meantime PRAY for Jenna. My heart feels like it is being squashed ...I cannot imagine theirs. Please pray todays test results for Jenna show NO leukemia. It is the worst news they could receive. Please pray. Please tell someone else to pray. Lift Jenna up.

Tuesday, February 15, 2000 at 10:19 PM (CST)

Matthew updated this on Saturday, as we usually do. I needed to write again tonight, because I just read an urgent request from another mom. Jenna, who had a cord blood transplant at Duke University, needs your prayers. Although I just found out, the request was written on Feb 12th. Jenna's white cell count and platelet count are low, with the most alarming comment...blasts were seen on the white count. This is indicative of leukemia. She had her blood drawn today in hopes that there was a lab error, which is possible with such a low count. They did cymerism studies 2 weeks ago, which tells one how much of the bone marrow is hers or the donors. When they went to check to see if these results were back, they heard her studies were "lost".

Saturday, February 12, 2000 at 09:03 PM (CST)

Leslie continues to be in great discomfort; we believe from the foscarnate. On the positive side, we continue to see improvement as a result of the drug. the fevers are almost gone- generally between 99 and 100 degrees. The body shaking is hard to detect; she continues to have major tremors in her hands, but we think this is from the cyclosporin. Leslie had bouts of graft vs host disease this week- the first in months. We do not think it is a significant problem because we think it is because she failed to get her cyclosporin doses several times- the result of being NPO one day and then severe diaphram contractions the next couple of days just after taking the pills. We would try to replace, but they came back too. We have had no trouble since Wednesday and the GVH has subsided. We held off tapering the cyclosporin, but that does not feel like such a big setback. We will take down the dose slightly on Monday and are very optimistic.
We are exceedingly anxious to get off the foscarnate. It feels like chemo in it's impact on Leslie's health, except it is more constant. Really, her physical health has been negatively impacted more by this drug than any of the chemo treatments that I can remember.
We expect another spinal tap soon, but do not wnat it any earlier than they would be willing to stop the foscarnate anyway. We also did some research on some alternative medicine, and suggested it to Leslie's docs. We have not heard back from them with a reaction. We hope they are open to other tactics insofar as they had no experience with the foscarnate protocol and hopefully will not have tremendous ownership in that process. Antigen transfer factor #2 is what we researched- made by a co. in South Carolina. We know it's been used on HHV6, though not sure if any cases have been in the spinal fluid. The doc with the most experience is in Italy- Dr. Giancarlo Pizza. The only doc in the States we have been able to locate has apparently had his best moments already and has been described to us as rarely lucid. Not much promise there!! We are interested because we do not know if this herpes strain returns- like a mouth sore-, or if it is a one time deal like chicken pox.
MZ

Saturday, February 05, 2000 at 07:29 PM (CST)

This week was bad. My stomach hurt which made me throw up a lot. We do not know what it is, but my mom thinks it is from the foscarnate. That is what I take for my virus. Mom says it can cause gut pain. Yesterday we were at the hospital for 12 hours and they put a camera down my throat, The doctor gave us three pictures. He said they all look good. I have not picked a frame yet(not). I got two sets of packed red cells and some platelets. My counts were really low.
I am going down on cyclosporin but my daddy says I have some graft vs host, so maybe that's a problem. I like to go down on that because those pills smell like a skunk. Oh, when they went into my stomach, they cut two pieces to be able to test them. They have not called us yet.
Since I am not eating at all, I have TPN for 12 hours. It gets stored in a heavy blue backpack, but it is too heavy for me to carry. I did have a little bite of fruit cocktail today and I was hungry after my surgery yesterday.
They wanted to give me a back poke yesterday, but we discouraged that. They will do it in two weeks anyway, so we thought it was okay to wait.
My birthday is this week and I can't wait. I will be a teenager. What I want for my birthday is to FEEL GOOD. Four families gave us a Valentine's gift today and there was a huge chocolate loaf- I want to feel good enough to eat some. I have to watch my daddy- I think he tried to hide it. Very tricky!!!
I still shake so it is hard to eat. I never exercise really- my mom has me walk around the house a couple of times. I like it when Taylor rolls my pole for me. I waited for him to come home from basketball today to walk. I feel kind of yucky right now, but better than the last 4 days. Probably cause they filled up my tank yesterday!! I am going to bed now.

Sunday, January 30, 2000 at 12:52 PM (CST)

This was a tough week for Leslie. Her ability to eat and drink is essentially gone. Absolutely nothing stays down. We had started her on TPN to supplement her eating several weeks ago; it is now her only source of nutrution. We also hydrate her with potassium water throughout the day, so in addition to the 9 hrs of IV meds, she is always hooked up. That is not much of a problem, because she is not active at all. Her abdomen causes her great discomfort. We'll go in on Monday or Tuesday to see a GI doc. The boys and I just got back from the hospital with her. The good news is that her doc does not seem terribly concerned about her current discomfort- or at least we hope that is good news. Kathleen is not convinced that the diagnostic/treatment protocol we are currently following is appropriate.
Counts were lousy this week- we will get counts again later today, so we always hope. White is back down to 1.2; I continue to worry about red also. It has been on a slight gradual decline for 5 weeks. She can get transfusions if necessary, but that is not preferred. Her energy levels and spirit are tough to keep up with hemoglobin hovering at 8.0. She has active nauseau many times a day and that gets old.
We do feel positive about a couple of developments. Though the fevers persist, they seem to top out at 102.4- 1.5 lower than the past several weeks. The tremors are also ever-present, but again we feel they may not be as severe. Perhaps the foscarnate is having an effect on the virus.
BTW, it is entirely possible that the foscarnate is causing the GI problems. We think an ulcer may have developed as blood has been present over the last 24 hours.
Leslie is playing a game of Sorry with her brothers as I type this. It is her first activity in several days, so I am hoping she is on the rebound. Sitting up at the table over the last couple of days was out of the question.
Came off prednisone, so hopefully we are done with steroids forever. We haven't seen signs of Graft vs host disease and the prednisone and cyclosporin were the main combatants. I am sure she has lost some of the cyclosporin this week too with all the shoe-painting, so she and I are really excited about the prospects of success getting off the cyclosporin. We are shooting for 6 weeks.
Leslie and I are really ready to get her healthy enough to go on our daily walks again. We speak about them wistfully. We try to keep her off IVs from 10-12 every morning; she and I go for a drive. I used to get her a grape soda (hide from Mom- she doesn't need the sugar ya know- provides a breeding ground for bacteria), but that longer appeals.
So anyway, we're fighting away here, one day at a time, and knowing that we're closer to the beginning of feeling good.
MZ

Sunday, January 23, 2000 at 02:04 PM (CST)

I came home Friday night from the hospital. We do the IV's at home. I have to get them 3 times a day and it takes 3 hours each time. I also get tube feedings. I get really bad fevers when I get the medicine. My daddy told me that 65% of the people get fevers. He said 45% also throw up. Me too.
Went into the hospital today to get blood counts. My legs and feet get numb so they wanted to check some stuff in my blood.
Since I came home it is sort of hard to move around because I am hooked up to my pole. Can't just walk out to the kitchen. I still have the shakes and one of the doctors thinks they will stay around, but we hope they leave.
I am almost off prednisone. Maybe only 1 more week. Then the cyclosporin starts to come down. It tastes bad. They say I do not have any graft vs host disease right now.
I think I might be low on red blood. We will hear in a couple of hours. Except, I feel pretty good today. I am worried my shakes won't go away. I also get afraid when I have to take pills, cause they come back lots.

Thursday, January 20, 2000 at 06:15 PM (CST)

The journal entry from Tuesday misrepresented the diagnosis just a bit. Rather than HHVG, Leslie has HHV6. Couldn't read my own notes. Anyway, the more we hear about her condition, the rarer we realize it is. The infectious disease guys have been communicating primarily with Sweden and Japan; apparently the Center for Infectious Diseases doesn't have much data on this. It is not common to be in the spinal fluid and is generally found in newborns- it causes rosiola (sp?). Treating it in the central nervous system seems to almost be anecdotal at this point. BTW, thanks for all the suggestions regarding pleconaril; I am told it would not work on this strain of herpes. Indeed, if I understood the doc, it would not work on any of the family.
I learned one really cool thing about Leslie's recoevery this week. In September, for the first time ever at OHSU, they had a pediatric Bone marrow patient survive intubation (being on a vent). That patient was Leslie!!! In October, a pediatric patient again was taken off the vent subsequent to a bone marrow transplant. That patient was Leslie!!! The only one ever!! Did it twice. Full Disclosure- they have had one adult patient also make it. He/She must have had lots of people praying too. So, we really recognize we have lots to be thankful for- we just want even more.
Leslie has had 4 treatments so far- every 8 hours. She feels lousy, but is peeing well (she is none too happy with that type of commentary on the web site- believes it is WAY more info than required) which is a good sign regarding her kidneys.
There does not seem to be a consensus on how long she will need to be treated. The original estimate was a week, but I sense that will change to longer, perhaps much longer. We continue to hope that we can bring her home soon- if her kidneys hold up, we can give her the IV's here and keep fluid running constantly. She wants her couch back.
MZ

Wednesday, January 19, 2000 at 12:48 AM (CST)

Thought we'd update midweek because we have a significant development. We learned the identity of the virus in Leslie's spinal fluid. It is HHVG, a form of the human herpes virus. As many of you know, it was herpes which caused the pneumonia back in September. We had been advised after the first lumbar puncture that herpes had been ruled out- guess something changed.
Leslie will be admitted tomorrow and will get IV's for 10 days. If she does not react badly, we may have some of those days at home. She will either get a med from the acyclovir family or phoscarnate. Side effects will be the determinator. It looks like renal damage is being weighed against marrow suppression.
So, Leslie continues to suffer, but now we have a plan.
Counts were up a bit from Friday. White is up to 1.3. So overall, a wonderful day. Kathleen and I kept stressing this to Leslie- hopefully the worst will be over in several days.
MZ

Sunday, January 16, 2000 at 02:48 AM (CST)

This week started well, but ended poorly. Went in on Tuesday for another spinal tap and a cranial MRI. We learned that Leslie's counts were continuing to rebound, the MRI was negative, and the white count in her spinal fluid had gone down- all good news. Leslie was very perky on Wednesday, and Thursday was feeling fantastic. She ate really well both days. We had undoubtedly turned the corner. Thursday morning Leslie came into my room insisting that I get up and start the day, then walked downstairs calling "Hi Mom!". Kathleen and I were on cloud nine- KZ had a big old smile.
Leslie had an appointment on Friday to check counts again- I considered cancelling because I saw no need to risk being around others when clearly she was on the mend. Who needs another infection, and the flu is going around. Went in anyway. Well, she seemed more tired early in the day, and needed a nap as soon as we got home. We then got the call with her counts. Horrible. White down to 1.0. We were shocked. Red counts, platelets- all were bad, but the white truly stunned us. Leslie has been running her high fevers again, feels lousy, tremors, nauseau- the whole bit. We are bummin. So, it is back to the TPN- well, never stopped it, but we felt that we were about to, and back to IV fluids during the day.
We are assuming the the virus in her spinal fluid has reasserted itself, though I suppose it could be a new bug.
Got a very nice letter from Leslie's donor. It is edited by OHSU to ensure it does not reveal identities. Her name is Andrea (goes by Andi), is married with two small children, and sounds like a sweetheart. We (Kathleen) have told her a bit about Leslie, though she is not allowed to know specifics either. That changes after 1 year, if both parties agree. Sounds like both will.
REALLY hoping for more progress this week with the meningitis. We are scared, because with the low white count, Leslie has so little ammo with which to fight. She is drinking lots of milk, but food is tough. Her protein and albumin sank way down this week- really disconcerting as she has been drinking 5 glasses of milk most days, gets 44 grams of protein in the TPN, plus other sources. We cannot imagine what is sapping her. Most disappointing.
Lots of back pain from the lumbar puncture- that'll last a couple more days.
MZ

Sunday, January 09, 2000 at 12:20 AM (CST)

This week was one of the longest months of our lives!! Leslie continues to battle the viral meningitis. The exact virus has still not been identified, and I doubt will be. An MRI is scheduled for Tuesday morning. Leslie is really afraid about what they may find. That duty is usually mine; I am surprised that she is so worried. I doubt that it will reveal much- they've been discussing an MRI for weeks- I believe if it was considered to be a likely vehicle for diagnosis they would have tried long ago. The tremors continue and at times are really severe. Quite bothersome and scary. She has trouble breathing evenly and keeps biting her tongue, cheeks, etc. She slept in our bed last night- the bed shook for several hours. Again, I tell you I do not know how she handles it so well, or at all for that matter.
We received one piece of truly awesome news on Friday, news which gives us great hope. A chimerism study was initiated on Day 100. It tested the blood for genesis- whose marrow is producing the blood. All the blood tested comes from the donor's marrow. 100%!!!!! Indeed, because Leslie was not in remission at transplant, this significant indicator is of even greater importance. It means, or at least I think it does, that Leslie is much more likely to be anti-leukemic (especially if that is really a word).
Fevers continue, though perhaps a bit lower than last week. We had her on an epilepsy med to combat the tremors- many side effects made it not right for us, and I think it may have also increased her fevers (a notion my RN/wife thinks a bit loopy). Anyway, I hated that med.
Leslie's platelet counts keep rising, but with her inactive lifestyle I kid her that she needs to refocus her marrow. Bruising is not very likely on the couch!! White and red cell counts need the increase more.
Leslie is getting IV food and fluids daily. We still try to get reasonable amounts of food down, but some days are not as successful as we would like. We need to check carpet pricing.
Leslie watched much of the Redskin game with us, though never did she give us the alto in "Hail to the Redskins" which we sang after every score- and there were lots of them. Her voice is sort of weak, and the little guys, well me too, bellow right good. I told her that's why she has the mike and amp.
So, to close, Leslie continues to fight the virus in her spinal fluid, and it looks like it is up to her to beat it. She is getting anti-fungals and antibiotics to keep other bugs away while her white cells do their job. We pray there are enough of them. ( White count is 1.5, up from 1.3 last week, but down from 2.4 2 weeks ago. Would like to be above 4) We continue to practice a type of tough love around the house- we are always pestering her to eat, drink, climb the stairs, breathe into her incentive spirometer, etc, while watching her shake and battle the fever. Sometimes makes one wonder if it is the right path, but it is the only one we understand.
MZ

Saturday, January 01, 2000 at 07:40 PM (CST)

I woke up with a smile on my face on Christmas Day, knowing that we were all home together. Every day we would hold our breaths wondering. We had a very special day together, but as night came Leslie became sicker. The temperatures and extreme fatigue increased, and the eating decreased.
On Monday, Leslie had an echocardiogram, and again on Tuesday since they were unable to get a good view the first time. This is a very uncomfortable procedure for Leslie because they press very hard on her chest, especially where her central line is. The physicians were concerned because the source of infection was still unknown, and apparently getting worse. Leslie had a spinal tap on Wednesday for further diagnostic testing. We were told later that evening that it was not bacterial, but there was either a virus or possible leukemia in her CSF(cerebral spinal fluid). On Thursday at 12:30, I found out NO leukemia!! The relief was immense! We are still waiting to hear what type of virus cultures out. I called today, but no results yet. We return to OHSU on Monday.
Thursday and Friday were so much better for Leslie...the temperatures, her energy, her eating were all improved!! We had a very nice New Years Eve together!
Today the temperature is back with a vengeance. Leslie developed a cold yesterday. I am giving her IV fluid today so she can stay hydrated. She doesn't feel well. Her white cell count is extremely low, so it is very difficult for her to fight this infection.
Continue to pray for her fever and infection to GO AWAY!!! Thank you all for being there.

Saturday, January 01, 2000 at 07:40 PM (CST)

Saturday, December 25, 1999 at 08:16 PM (CST)

We are having a great Christmas; Leslie feels reasonably good. She still has her fever, so she is still is not quite 100%. One item I neglected to mention last week was that her liver functions were deteriorating, but they have gotten better this week. So, liver is better, but fevers are worse. Her fevers fluctuate, but the apex has grown from last week. Physically she may feel better; at least not worse. It is quite strange because the higher the fever the better she feels. When she feels down, I take her temp and it's almost normal. When she is perky, I take it and it's above 102. Go figure. spent most of the week- business hours- at the hospital. Not that big a chore because it is the only place she is allowed to go. Kathleen was afraid all week that they were going to insist Leslie be admitted, and not be home for Christmas. We arranged for IV fluids at home- we give them at night. That was she stays well hydrated and does not feel the pressure to drink constantly. The only other thing they would do at the hospital is give antibiotics, but they've pretty much given up on bacteria as a cause.
We wanted, and the docs agreed, to get more aggressive this week in determining the cause of the fevers. Many more cultures have been done and lots of possible causes have been eliminated. Kathleen was concerned about the CMV virus in particular; that has come back negative twice, so good news there. Leslie had total body CAT scans done on Thursday and they appear fine too. As I took her to the hospital that day I was really hoping they would reveal a cause, but as she was getting the scans I thought about all the horrible things they can find with CAT scans and started getting really scared. So when they said no source found, I was excited.
My little Leslie is next to me as I type this; it may sound silly but it makes it so much more fun. I have been encouraging her to E-mail Amy Craw because I like her notes in the guestbook so much. Then Leslie holds out her trembling hands and I remember that she cannot really type. I want her to get back in the choir soon so I can meet some of those girls! She did try some computer work today because she got Print Shop, but I do not think she got far. The trembling is very severe. Her patience with that side effect is great.
Leslie spent much of the day singing. She got a professional model microphone/amplifier and sang us carols. I figure there are dual benefits. It also is great for her lung expansion, which always concerns me. Right now she has cold sores in her mouth, and of course that caused her last bout of pneumonia, so we try to be diligent with breathing exercises.
Leslie got her report card last week. Many thanks again to the Alki staff. They have been great. Leslie got a great report card, though no credit in math was tough to stomach because she has worked the hardest in that class. She is admittedly behind; we hope to catch up soon and get the grade placed. Her teachers have been awesome in their support.
I take Leslie in on Monday for an echocardiogram(She hates them- too cold and right near her op site, so it hurts). Again, trying to determine the cause of the fever. Also, I have been expressing concern about the heart rate. It runs from 125-150 when we go in- fevers will make it faster, but that seems too fast to me (note that they never ask my opinion on other patients, so perhaps my input is not as valuable as yours truly may imagine).
Thank you for all the wonderful Christmas wishes we have received. I had a couple of college friends write letters that had Kathleen crying, and she is tough to make cry- not!!
MZ

Saturday, December 18, 1999 at 09:19 PM (CST)

As Kathleen mentioned in last week's update, Leslie was feeling low on Saturday. That proved to be a forecast for the week. She has been running a low grade fever the entire time. We've had her in the last three days for antibiotics; we also give her antifungal meds and Septra and Acyclovir at home for bacteria.
Not much physical activity this week, though we got in a 4 block walk today. The only one of the week.
We put up the Christmas tree today. Cannot have a live tree and decided to construct our own.. It was pretty much a male project. The girls eyed us very skeptically throyughout. Never has the combination of two dining room chairs, a barstool, a golf umbrella, 6 stretched wire hangers, and lots of KNEX- like legos but better- been more evocative of a family Christmas. Used colored lights and light ornaments- Kathleen and Leslie displayed some doubts about our sturdiness, so forbade the use of their
favorites. Eventually they, like all fine women, were won over by enthusiasm and creativity.
The house is decorated more than ever this year. Kathleen has really worked hard to get every room addressed. The hand-made Christmas card project really got bogged down. Leslie's tremors were horrible this week. Could not feed herself generally- just shook too much. Had to use plastic cups for drinking, otherwise we are looking at big dental bills. I hold the cup but she still chatters away. We need to adopt plan B on the Christmas card ASAP, cause she is our artist. Actually, we need to GET a Plan B, then adopt it.
Leslie has been sad much of the week. She feels tired and yucky much of the time. Christian, who always feels a responsibility to cheer her up, had a rare defeat. He has a trick he very occasionally, but very effectively, uses when he thinks he needs it. He whispers to Leslie, in a falsetto voice, that her _____are growing. I guess for a 12 year old girl, that brightens the day. I know he giggles lots when it works. That failed to get a grin for the first time.
Lots of jealousy again this year about my stocking. Everyone wishes mine were there's. They try desperately to hide the jealousy, but I can read em like a book.
We are hoping for an improved week as we move toward Christmas. We really want to get rid of the fever. Mybe it is graft vs host, though I do not think so. She does not have any other syptoms flaring. She also experiences gut pain in the middle of the night frequently.
Merry Christmas!!!! Ours will be as long as Leslie kicks this infection.
MZ

Saturday, December 11, 1999 at 09:52 PM (CST)

It is always hard to update you when Leslie isn't feeling well, which is tonight. It has been a rough day for Leslie, but I am remembering that she had a very nice week. After several weeks of extreme fatigue, Leslie had periods of more energy! On Monday I went to work worrying about my Leslie, because she had a very hard weekend. However, Monday was a new day. She felt better and was wanting to do more activity! On Tuesday when she goes to OHSU, she felt really good, and was decked out for Christmas. The topping on the cake were her lab counts! The white count was on the way back up...I could not stop smiling:)
As last Tuesday when Leslie awoke with excruciating knee pain, the pain returned this Tuesday night after the IVIG. It was very hard to get a handle on the pain, yet we felt relieved knowing this time that it was from the IVIG, and not from the leukemia! Also, that was Leslie's last IVIG treatment, BECAUSE tomorrow is day 100. It will be 100 days since her bone marrow transplant, which is a very special milestone!!!!!!!!!!!!!!!!!!!!!!!!! We will be celebrating tomorrow...we are very excited!
Leslie walked 2 miles on the Klineline path on Thursday...2 miles! Her cyclosporin level was high this week so they reduced her drug dose. We liked that because her "tremors" decreased...still significant, but lessened. She has been weaned off of one of her blood pressure medicines, and they decreased her prednisone dose this week. So we have seen alot of progress this week, and we are so thankful.
Yesterday we received 3 Christmas card: one from Grandma and Grandpa, one from Uncle Bob, and one from Aunt Bea. All 3 were having Leslie remembered in Christmas Mass Novenas. We told Leslie that she is covered on Christmas:)
Great news! A bone marrow match was found for Woody! He started the process on friday.

Saturday, December 04, 1999 at 06:59 PM (CST)

Leslie suffered acute pain in her knees for most of the week. It first appeared Monday night, but became much worse later in the week. Our initial reaction was dread, as bone pain had been the symptom when she relapsed. On Tuesday night she awoke at 3 am with bad pain and a fever. We assumed we'd be told to come in for cultures, but were advised to watch her for a couple of hours. We got her to drinks lots of water- thought she might be dehydrated- and the fever abated.
Got some pain killers on Wednesday. They are only needed at night the docs figure that the pain is a side effect of the steriods, or the IVIG. The effects of that are cumulative, so it is nice to know only 3 more weeks of it.
Leukemia as the source of the pain has not been ruled out, but is unlikely. Leslie's counts continue to deteriorate, but no abnormal cells are picked up. The decreases on the steroids will also cause count problems, so hopefully we are on track.
Leslie was really tired much of the week. She usually has about 3-4 days where she has lots of energy. Still doing schoolwork, but writing is hard. Her hand shakes quite a bit, so the penmanship looks kind of funny, especially the math.
Skipped walks for much of the week. White count was down to 1.2, so we are especially careful.
Leslie's skin is clearing. Her skin has had a rough texture- another Graft vs host side-affect. She has been really itchy; I suppose it is like after you have a sunburn. We really, or at least I, had not noticed her "alligator skin" until it started to clear. I remember a woman mentioning it months ago as a possibility, but had not really thought about it again. We are about to hit 100 days, so it is nice that it's resolving. Past 100 days, you're considered chronic and it has the potential to be around a long time. The tongue is still improving but it shakes like crazy too.
MZ

Saturday, November 27, 1999 at 06:47 PM (CST)

Leslie is sleeping on the couch while I write this update. She has had a really good week, although I was unhappy about her white blood cell count of 1.6 on Tuesday. Dr. Ted Moore, Dr Thomas and Kelly RN were all there to offer their support. Dr. Moore told me that if they did a bone marrow aspirate on Leslie right now that only 30% of the bone marrow would be filled. 70% of her bone marrow would be empty. At 6 months, only 40-45% would be filled. So, when there is an illness, the bone marrow (and patient!) takes a big hit. Very enlightening! He was so reassuring: I really appreciated and needed it. However, I can't wait until we go back for counts on Nov 30th, and see a much higher white cell count!!
Leslie's course is slow and steady. She does fatigue easily and needs ALOT of sleep. But during the awake hours, we have alot of fun and smiles. Her infamous tongue is looking better too!
We had a very special Thanksgiving day together. We all ate way too much, especially Leslie and me! Yesterday, we walked on the Portland side of the Columbia River. The sun was out (if you don't know Portland, this is an exciting statement) and the scenery was gorgeous! Taylor was having me work on my football throws...I think I am improved:) It was a wonderful outing.
Our family is thankful for Leslie's good health and for all our family and friends.
To my cousins Ralph and Reggie: my deepest sympathy on the death of your daughter, Stephanie. You will be in our prayers. May the Lord hold you and help you during this very sad time.

Saturday, November 20, 1999 at 08:04 PM (CST)

Really a quiet week for Leslie- and that is just the way we like it. She only had to go to the doctor on Tuesday- they again decreased her prednisone. She is now at half the original level. She is anxious to get off it because, among other things, it makes her face and torso quite puffy. Kathleen understands the medical reasons behind wanting to decrease it, but for a 12 year old, the mirror tells a big story. So, hopefully the dated pictures are understood. Not a day goes by that I do not tell her she is the cutest little thing ever, but I am not sure Dad's opinion means that much.
Leslie took her first algebra test this week and got an A. That was the good news. The bad news is that we found out we are 3 chapters behind- thought it was only 2. When I suggested we really try to hammer out a couple of lessons this weekend, she was able to keep her enthusiasm in check.
Leslie continues to accompany me wherever I go- this week she insisted I clean the area outside her bedroom window. It had become our family dump. Friday we got that accomplished- you can see that our highlights are few.
I tried to get Leslie to type this week's update, but she got too tired. She has been typing a report on Anne of Green Gables and is typed out.
Leslie has been assigned the task of giving Christian piano lessons. Now that is fun to watch. We also picked up a violin book at the library for her. Since she has the time and has heard her brother's efforts over the years, we figured she might want to spend some time sawing some Suzuki (we have Taylor starting lessons again and his excitement level is tempered- he wanted to take piano and lose the violin, but somehow I got my way on both).
Leslie and Kathleen are trying handmade Christmas cards this year. If they turn out well, than I am here to tell you it was my idea. If it does not, I'll fill you in later.
We are all really happy this Thanksgiving and hoping you are too.
MZ

Saturday, November 13, 1999 at 09:36 PM (CST)

Leslie and I are having a girls' night together. Taylor is at Alex's home, and Matthew and Christian went to his end of the year soccer party. Leslie sends her love to all you wonderful family and friends. She is working on her stamp project that Sue gave her. It is so special to have creative friends! The cards, she are making, look beautiful... I am impressed!
Although Leslie is doing really well, she is also very, very tired. She feels very achy and exhausted. One day after a 3 hour nap, she told me that she could hardly keep her eyes open, and couldn't wait until the clock indicated it was bedtime. Her white cell count continues to drift down. It was 7.5 on Nov 2nd., and was 3.5 yesterday. We have been going down on her prednisone, which will contribute to the decline in the white cell count. For the medical types out there, her differential is good, with neutriphils at 84% I received a pep talk from a Peds ICU nurse. She was confirming that all is well, and often she hears from parents of children she has cared for in the ICU, and it has taken a full year for the children to return to their normal strength and energy.
We are so grateful that despite her mouth (sores and numbness), that she is able to eat well...really well! I love her appetite.
Also, Leslie has taken a walk every day, but two. Her gait is so much stronger and athletic. When the rain never stops, she does the stair-stepper, or the stairs, but Leslie definetely enjoys walking in the outdoors.
We are going to update this every Saturday...wishing you a very good week.

Friday, November 05, 1999 at 07:17 PM (CST)

I finally got to have the feeding tube removed Tuesday! I even pulled it out myself. It has been much easier to sleep. I don't have to listen to the feeding pump snore in my ear all night.
Tuesday I went in for IVIG and blood counts. My counts had all gone up a little. Today, though, we went back for blood counts and my plateletes and white blood seem to be dropping.
Yesterday my ear started to hurt. We were a little concerned that I had an ear infection. Ever since yesterday it hasn't hurt again so I guess we'll see what happens this weekend.
I'm still running lots of errands with my dad. I can't get out of the car so sitting in the car gets old but it beats sitting around at home.
I just found out today that I won a creative writing project that I entered. I had to write the coolest thing about my school in 50 words or less. I wrote about how much they have helped me for 2 years during my illness.
I've been taking 30 minute walks with my mom every day. You can definitely tell I'm getting stronger because I walk faster and not so much like a duck.
My cheeks are really chubby or, as my brother would say, fat. They said that they would stay that way till I'm off prednisone and that could be a long time from now.

Monday, November 01, 1999 at 03:30 PM (CST)

Leslie continues to get a bit better every day. She has been taking long walks daily with Kathleen; perhaps 3/4 mile today. Her heart is racing at the end. She rode a bike around the cul-de-sac a bit yesterday.
Things are progressing well food-wise. She is eating wonderfully. We cannot imagine that they will not let her lose the feeding tube tomorrow when we go in for the IVIG treatment.
We are also hoping that they cut down the prednisone dosage. This steroid really puffs her up; her torso is much rounder than the svelte Leslie look. I like to tease her that she cannot pass in front of the TV cause we miss too much of the game. That's when she lands on you- 107 pounds hurts!!!
Leslie is doing lots of homework. She sent several assignments in with Taylor today, but it is truly hard to keep up much less catch up. We are still weeks away, I think, from being able to let those able-bodied kids at Alki see us in their rear-view mirror.
Leslie is growing hair fast!!! Looks like it will be darker than last time. Her nails also look much thicker; you can see a line in the middle of each nail where it is a darker white (my oxymoron for the day).
The tongue is still quite a problem, Leslie has been reading lots about BMT patients. She was showing us pictures of tongues that look much like hers. Hers is white on both sides and the middle- well nevermind- too much information. Suffice it to say that it looks horrid. We- well, she- learned that it is from graft vs host disease. We thought they were cold sores that would not go away due to low white counts. At least now we know why they are so persistent.
Leslie REALLY wanted to go to her brothers' soccer games on Saturday. We kept trying to think of some way we could ensure no contact with folks and still have her near the fields, but decided against. Basketball practice starts this week for the boys so those games will be frustrating as putting her in a closed gym will not be possible.
The referee at Taylor's soccer game overheard me talking to Ray Bartlett about Leslie. He asked if I am Leslie Zolbe's dad. I said yes. He said that Leslie is in his Life Sciences class. We think it is so cool that the students truly think of Leslie as a classmate this year. He mentioned it just as if Leslie sat right next to him in class. He was a good ref too.
MZ

Friday, October 29, 1999 at 03:23 PM (CDT)

Leslie is having a very nice day. We were getting ready to go to the hospital today for counts and a checkup. Leslie took her cyclosporin pill...whoops!...the main reason we were going was for the cyclosporin blood level. We all knew she shouldn't take it, yet none of us remembered. So we will head in tomorrow for counts.
This morning, Leslie helped me make cherry cobbler. While it was baking, Leslie and I bundled up, and went for a leisurely walk. We enjoyed looking at all the houses, dressed for halloween. The cobbler was delicious...Leslie had 2 servings! She is doing a great job eating. I think by Tuesday, we can pull the feeding tube. As I write this, she is on the couch working on homework. It is so wonderful to have her home.
We received an email to spread the word about a very special little girl. Her name is Amanda Bundy. She is 6 yrs old, and lives in Greensburg, PA. While her mother was hugging Amanda, she found a lump, which turned out to be a massive malignant tumor on her back. It has spread to many parts of her body. They are currently waiting on bone marrow results, to see if it invaded there. The family wants to spread the word to as many people as possible, to start the prayers going for their precious little girl. I know the panic and desperate feeling. Thank you for your prayers.
Also, I know that I have conveyed before how many children have died from leukemia. It is so scary. Did you know President and Barbara Bush lost their little girl, Robin to leukemia? This summer I met a very special boy with ALL, Greg Brown. I met him via cyberspace, but it has been very personal for me nonetheless. He died September 14th, after multi-system failure following his bone marrow transplant. His mother, September, has kept a Web site, logging their journey with leukemia. His website is www.launchpad.to/greg/
Greg had a very special interest in space: through Celestis, his ashes will go on the next rocket launch. You can read all about Greg on his website.
We hope you have a great weekend. Taylor and Christian have soccer games tomorrow. Matthew and I love watching our boys play!

Wednesday, October 27, 1999 at 06:37 PM (CDT)

Well I didn't get my feeding tube out today, in fact Dr. Thomas wants to wait till Tuesday to see if I have been gaining weight. Eating wise I've been doing fine but the calories are what really are keeping me from getting the tube out.
I went to the doctors yesterday and all looked good. My white counts seem to be still climbing it is now at 5.8! Plateletes were starting to rise but have started to come down again, I'll probably be transfused on Friday.
My dad has been a real worry wart today. My cheeks are really puffy and he's really worried that too much fluid is hiding in my lungs. I don't think he's right only because when I do the breathing exercises I do just as well as when I'm not all puffy. If there were to much fluid in my lungs I would not be able to do this.
Since the only place I'm really allowed to go is the hospital I've been riding in the car alot with my dad when he runs errands. I don't really get much exercise being in the house so my parents have been making me walk up and down the steps.
I am thinking that I will update my page a couple of times every week. My days are not that exciting so it is hard to find interesting stuff to tell you. I know I have to start doing more homework, but you do not want to hear about THAT every day!!!

Wednesday, October 27, 1999 at 06:37 PM (CDT)

Well I didn't get my feeding tube out today, in fact Dr. Thomas wants to wait till tuesday to see if I have been gaining weight. Eating wise I've been doing fine but the calories are what really are keeping me from geting the tube out.
I went to the doctors yesterday and all looked good. My white counts seems to be still climbing it is now at 5.8! Plateletes were starting to rise but have started to come down again, I'll probably be transfused on Friday.
My dad has been a real worry wart today. My cheeks are really puffy and he's really worried that too much fluid is hiding in my lungs. I don't think he's right only because when I do the breathing exercises I do just as well as when I'm not all puffy. If there were to much fluid in my lungs I would not be able to do this.
Since the only place I'm really allowed to go is the hospital I've been riding in the car alot with my dad when he runs errands. I don't really get much exercises being in the house so my parents have been making me walk up and down the steps.

Saturday, October 23, 1999 at 02:40 PM (CDT)

Home at last! There's nothing like sleeping in your own bed, eating food from home, and even fighting with your brothers again.
Christian has been very sweet and is always thinking about keeping germs away. Taylor on the other hand doesn't seem to quite get the point.
I haven't counted but I take at least 35 pills a day. (That doesn't make my stomach to happy)
I still have the feeding tube and I hope that will come out wednesday by the latest. I hve been eating pretty well which makes me think maybe wednesdays a posibility.
I can already see that this beeing home for a year is going to drive me crazy. I'm already wanting to go places and it's only been 2 days.
I go back to the doctors tomorrow then on monday and tuesday, these people just don't want to give me a break from the hospital.

Friday, October 22, 1999 at 03:45 PM (CDT)

Leslie is in her room singing along to one of her Shania Twain CD's. I think I am in heaven. Not much in life is better than listening to your 12 yr old daughter singing and happy.
We just got back from the hospital; her blood counts are outstanding. Her blood pressure and cyclosporin levels are too high, so we'll reduce the latter over the weekend. Back to the docs on Sunday.
Yesterday's homecoming was awesome. The boys were so excited. Christian in particular is so good about being loving from a distance. He won't go in her room but stands at the door chatting away and smiling a huge grin.
Kathleen spent the evening in the kitchen. Leslie eats relatively small amounts but KZ was working on apple crisp, angel food cake, macaroni and cheese, etc. in the event Leslie wanted a little. I married a party chick 15 years ago but she got awfully maternal on me in the ensuing years. Still looks quite crisp in a New Year's Eve number!!!
Anyway, Kathleen drove Leslie home yesterday while I went to pick up all the prescriptions- apparently my car was too dirty for Leslie- KZ's story. The outside of the house had been decorated by Sue Wyszinski and Jeanne Barr. There was a big banner from Alki and a purple sash across the front of the house. The sash may stay awhile- KZ likes it a whole lot.
Leslie.
The only negative at home is the nausea which accompanies the meds. Leslie takes lots of pills at midnight, at which time she is also being tube fed. She gets a really upset stomach and it's lasted for a couple of hours the last two nights.
MZ

Wednesday, October 20, 1999 at 12:20 PM (CDT)

Going home tomorrow! I can't wait. The doctor came in yesterday and told us that nobody thought I could make it. Well goes to show how much they know about me.
My breathing was down to 25 consistently last night! Dr. Moore, the transplant physician, said that most people's lungs don't clear up nearly as fast as mine did. And that it was due to all the hard work I've put into it. Every two hours I do breathing exercises during the day, I will have to do them for a year.
I am really bummed that I can't go to school this year 'cause I have really good teachers and of course miss my friends. I'm ready for visitors but because of germs I won't be able to for a year. BUMMER!
My brothers chicken poxs have crusted over, thank goodness, so that shouldn't be an issue.
I had to erase some of the guestbook for it was getting to full. Sorry if yours was one of the ones that got erased.
Thanks for all the prayers.

Tuesday, October 19, 1999 at 02:09 PM (CDT)

Today I feel pretty good. My darn old cold is really bugging me, but besides that I feel fine.
One of my main priorities is to work on eating so I can get this tube out before I go home. 2 or 3 more days! Were kind of getting worried that the doctors won't have all my meds changed before then so today we're getting on them about that.
I walk in the halls from 8pm-9pm every night. Even though the hall I have to walk in is plain it's so nice to get out.
Dakota leaves tomorrow. My brothers have not been really happy with me since I'm the reason she's leaving.

Tuesday, October 19, 1999 at 12:56 AM (CDT)

A very quiet day in room 7. We are trying to prepare for home care. Dakota flies out tomorrow. We are having all the air ducts cleaned tomorrow too. Then I will steam clean all the carpets. The boys are surprised to learn that they will have to take all school clothes off in the laundry room and take a shower immediately upon entering the house.(Should have instituted that policy long ago!)
We still see signs of GVH. Chronic graft vs host is that seen past 100 days. Prior to that it is considered acute. It seems odd, but we are rooting for some chronic as Leslie was not in full remission prior to the transplant. The prospect of a relapse is too dreadful to consider.
I should have mentioned over the past several days that Leslie's respiration has improved dramatically. She uses an incentive spirometer; a device you use for inhalation. Using the marked calibration, she inhaled 250 just 10 days ago; she is now up to 1500 (not sure what the standard of measurement is). Her breathing is much less labored. Her blood pressure is about the only significant issue, and it is artificially inflated due to the anti-GVH meds.
Also should have mentioned that Taylor has the chicken pox, so he must scab over prior to Leslie coming home. He was miserable over the weekend, but feels much better now. He looks horrendous and is appalled at the prospect of anyone seeing him. The boys and I took Dakota for a really long farewell walk today, but Taylor was insistent that we get nowhere near anyone else. I am so glad he feels better because he is a lousy patient. Nothing like his sis.
MZ

Sunday, October 17, 1999 at 10:57 PM (CDT)

Overall a very good weekend. Leslie, with the exception of some cold symptoms, feels great. Lots of reading, artwork, e-mailing, and, of course, sports on tv avec moi.
Blood Pressure shot up yesterday. Attributed to high cyclosporin levels. They want to keep it under 350. It rose above 500 yesterday. Cut back on the dosage. Today it was 393. As it is a critical component of the anti-rejection regimen they do not want to reduce too quickly.
Leslie took the longest shower on record today. Looked like she had a sunburn when she got out. Not easy to accomplish when you have a marrow tan.
While she is still being tube fed Leslie is also trying to ramp up the food.
Leslie seems ready to start on homework, though we may wait a couple more days. With all the narcotics she has had her memory has not been great; now that she is scaling back we can think about school. We do not want to start too early because she may have trouble with sequential aspects if still medicated. No sense learning it and forgetting.
The docs are getting as many of her meds converted to oral form in preparation to go home!!! We are very excited.
MZ

Friday, October 15, 1999 at 04:05 PM (CDT)

We just received a computer in Leslie's room. So although she is too tired today, she said that she would update caringbridge tomorrow. (we got the message Ray!) I have already typed this two other times, and it kicks me off just as I am finishing...ugh!
Now for the fantastic news...are you sitting? Leslie may be able to go HOME towards the end of next week!!! Her energy level increases every day. The nurses were way impressed with her walks last night. Leslie likes the activity, but says her legs still think that they are climbing Beacon Rock; which was one of our last outings together as a family. Leslie continues to work dilegently on her breathing and lung exercises. Her breathing is still 40 when she sleeps, but during the day she is able to bring it down. We turned off the tube feedings during the day to increase Leslie's appetite, because eating is a criteria for going home. Her last abdominal pains were last night. I definitely like the idea of Leslie eating, but I don't want her feeling pressure and I liked the good nutrition while she is healing. Her lab values are good, and her GVH is lessened. Matthew and I are beaming at Leslie and her wonderful progress.
We will be sending our cute yellow lab, Dakota back East to live with Matthew's parents until Leslie has a stronger immune system. We are checking to see if anyone will be making a flight from Portland's PDX to Dulles, National or BWI during the next week. Matthew has been trying to arrange flights back East for Dakota, but for some reason it is easy if someone is going that way. To be honest, you wouldn't even have to see Dakota or have any responsiblity.

Thursday, October 14, 1999 at 08:43 PM (CDT)

Leslie slept better last night, than she has in weeks. Usually an 1 or 2 max hours at a time is good. She actually had 4 hours of uninteruppted sleep, and other catnaps around it. It got her off to a better start today. Her migraines are gone...but she hit her head in the bathroom this morning on a corner piece of wood, and rather hard at that. So although a headache, thank goodness the pounding migraines are gone. They are monitoring her graft versus host quite seriously and closely right now. It is believed that this could be causing her abdominal pain. The tube feedings are going well today. I am so glad... I want her to be able to get adequate nutrition so her body can fight strongly! We were happy with all her lab values today. Her platelets are more manageable. She receives a unit of platelets about every 24 to 36 hrs...also very good!! Her lungs are better than yesterday. No longer breathing 60!, but still cruising around 40. She does a great job on all her lung exercises. She is able to do high volumes on her incentive spirometer. We remember in the ICU, when Leslie could not even hardly budge it. Leslie continues to push herself, even though she frequently doesn't feel good.

Matthew and I are so happy. We are frequently grinning...OUR LESLIE IS FEELING BETTER! Leslie had more energy today to smile...even laugh!!! She has a fun sense of humor! Gear your prayers towards lungs, GVH and lots of thanks.

Wednesday, October 13, 1999 at 11:35 PM (CDT)

Sorry for lack of update yesterday. Kathleen was unable to get through on our ISP.
Leslie did not make it long without the feeding tube. She was unable to eat enough. Then last night, as she threw up, I saw a yellow wire pop out of her mouth. She had thrown up the tube. Difficult to describe the brief moment of consternation before we realized what it was. It only took 2 seconds, but they were long seconds!! She did not look good with that tube up through her nose and out her mouth. She was quite successful in communicating her dissatisfaction with the situation. She was no happier when they inserted another tube.
Leslie's major complaints are nose pain- from the tube-, headaches, nausea, and achy joints. She gradually developed more rapid breathing, which continues to be my chief concern. She was puffing away at 60/min throughout the night. She was fluid long and administered lasix. She quickly voided 2 litres and brought the breathing down to 40. Still twice what I'd like to see.
The chest x-ray today- the first in 4 days- is much better than the last. Last night was a bad one for Leslie, all things considered, but I feel better having seen the x-ray and with the respiration down somewhat.
Leslie has developed more rash and 2 chemistries- SGOT and alkiline phosphorous- jumped overnight in a significant fashion. She is getting another round of graft vs. host disease. They were weaning her from the steroids, but must reverse course. This affects the lung/fluid situation negatively. They are using cyclosporin to the degree possible to combat the GVH, but then must use the steroids.
White counts are really exciting. She cracked the 5.0 level today. We are very psyched!!
Dr. Moore, whom we respect greatly, indicates Leslie continues to make progress. Kathleen, Leslie, and I do not feel that way over the past 3 days. Sure hope he is right. Learned today that the hospital upgraded her- she had been listed as serious, so that's gotta be good, eh mate?
Leslie walked up and down the hall for 10 minutes last night- they restrict access to an area for her from 8-9pm. She said today that it feels like she just climbed Beacon Rock (went there w/ girlchoir our first year). Breathing exercises continue to go well; but at rest is when she just does not breathe properly. Rapid and shallow with me barking to slow down. We tell her that we must retrain her lungs- do not know if that is true but we feel desperate to ensure she uses the bottom of her lungs. We also make her adjust positions in bed so frequently that, should some tragic accident befall Kathleen or me, Leslie should be suspect number 1. She does not get good sleep. We hope we are doing the right thing.
She wants her brothers to visit in the WORST way. It is topic numbers 1-5 with virtually no number 6.
MZ

Monday, October 11, 1999 at 10:52 PM (CDT)

Overall, today was a day of outstanding progress. Leslie was moved out of ICU due to her improved condition and to the fact that they have a hospital full of sick kids and needed the bed!
Leslie continues to labor in her breathing; I felt I was torturing her throughout the night. Every time she exceeded 40 breaths/minute I asked her to slow her breathing and take deeper breaths. She always did. This was necessary about every 30 seconds. Leslie also has the flu- not sure if KZ mentioned that yesterday.
At 10am Leslie's feeding tube developed a leak. She was told they would have to insert a new one. Not a happy girl. They cannot put her out for that because they need her to swallow so it does not go in her lungs and the lead is very uncomfortable (she would use a different expression). When they took the original line out Leslie instructed me to get her a bowl of soup; she was going to start on food and negate the need to be tube fed. She ate about 4 oz of noodle soup and it went well. Shortly thereafter she drank some Balance- a high calorie/high nutrition drink. Came back up. She then decided to try some macaroni and cheese. Ate a little of that, then some dry cereal and jello- all in small amounts. It remains to be seen if she can handle the volume necessary to get appropriate nutrition. She has been on limited nutrition since Fri am.
She has a large red valley in the middle of her tongue so eating is a problem, but I think Leslie now views pain differently than some. I hope she can do it because it sure would make breathing easier without the tube in one nostril.
Leslie really perked up when told she was leaving ICU. By the time we got to room 7 upstairs, her fever was gone- forever I hope. They have her on 3 BP medications which seem to have stabilized her, so she lost the arterial line in her left wrist. Very happy about that.
Leslie got another couple of specialists today- quite unimpressive. They handle ear, nose and throat. When I asked the first to wash her hands, she smiled sardonically and informed me that they do not even wash their hands for mouth operations. You see, the mouth is the dirtiest part of the body. Isn't she smart!!! Think of all the restaurants who have wasted so much money on signage in their restrooms encouraging hand-washing!!!
On the positive side, we really dealt with a couple of super intensivists and 2 awesome senior residents in ICU. Many nurses were great too. Heck, several other docs were really good too. Not naming names because I might miss some. On the other hand, it can be really scary how totally inadequate the performance of some other folks can be. Try this- if the patient monitor continues to alarm you can either react to the genesis of the alarm or change the parameters of when it alarms. Lots choose the latter.
Glad to be pushing floor 10 on the elevator again- really questioned whether that would ever happen.
Working on breathing exercises every 2 hours and she gets an albuterol treatment every 6 hours- forgot to mention many good respiratory therapists, and one who took an astonishing interest in our girl.
Hoping fever is gone for good and headache/ body ache of flu leaves. The last 2 times we thought Leslie had the flu she really had leukemia. Not probable this time given her good bloodwork. Doesn't mean mom and dad don't worry.
Next target- home in bed!!!!! and answerinfg e-mails. For those of you who may have e-mailed Leslie, those have not been read in weeks- hopefully she'll be busy with that task soon.
MZ

Monday, October 11, 1999 at 01:15 AM (CDT)

Leslie has had a difficult past 24 hrs. She says that she just feels terrible..."my head hurts, my stomach hurts, my bones hurt and I feel yucky!" The awful nausea though has seem to subsided since 8am. We were able to restart the tube feedings and give her adequate nutrition today. Her lungs continue to be an issue. Leslie does pulmonary exercises and turns every 2 hours. Her respiratory rate is 30's, and will drift into the 40's when sleeping. She needs reminded to take deep breaths. Her temperature continues to be elevated, which also makes her very uncomfortable. Many systems look good and her lab values are too. Her white count today is 4.0...YEAH!!! Continue to pray for temp and lungs.

Saturday, October 09, 1999 at 07:53 PM (CDT)

Last night was a good night for Leslie. She is working really hard to breathe using the lower parts of her lungs. We were sort of scared when the respiratory therapist announced at 10:30 pm that Leslie's lungs were worsening. They immediately called for an x-ray. They then concluded there was no change, though to this neophyte her x-ray looked better than the morning pic. Leslie has to work hard to breathe deeply and regularly. She starts to breathe 40-45 times/minute if she stops concentrating- that's the bad news. The good news is that she is ABLE to take deep breaths when she concentrates. So mom and dad stare at the monitor and tell her when to slow down.
Temps still a problem- running a 101-102.5 all day. Nothing positive on blood cultures yet.
Going back a day-one of the most fulfilling aspects of Leslie coming off the vent was the reaction of the docs. They literally were high-fiving in the hall after she came off. I suppose this speaks to their original prognosis for Leslie, but I found it touching that they were so excited. One was a resident, but the other has been around the block (a couple of times). I was told by a doc on the cancer staff that the MD's in ICU really needed one like Leslie to pull through. I realize that it must be frustrating and difficult to deal with situations where they sense the end result and it is not a good one. They are being exceedingly careful with Leslie's condition (breathing, temp, etc.) because they feel responsible for pulling her through after so much. I know they are taking credit for it- as well they should- but they do not realize how many others feel similarly.
The Foley catheter came out today. Obviously a good thing. We are hoping, though doubtful, that the arterial line can come out tomorrow. It is important for checking blood gasses and for a constant BP. Both are still issues. BP has been hard to control, though again they are really on top of it.
Leslie's voice is much better today- yesterday was just a whisper. Her throat still hurts but is not as raw.
Still burning up platelets, but other counts are looking a little better every day. White cell count now at 4.1- the bottom threshold of the normal range!!!
Stomach pain is severe for the past 12 hours. We want to get on top of that because she has had no nutrition since 6am yesterday and needs to stay strong. The goals for tonight respiratory, temp, and stomach. We learned today that she should have been on Zantac but was not- that probably will help the stomach.
MZ

Friday, October 08, 1999 at 10:48 PM (CDT)

It is with great joy that I write the entry this evening. Last night, we placed Leslie on a t-piece...the breathing tube is taken off the ventilator and placed on wall oxygen. It is like breathing thru a straw. They wanted Leslie to try to make it one to two hours...she went three hours!! Then they placed her back on the ventilator over night. Apparently, Leslie was not put on the appropriate settings, and she needed to work harder than intended during the night. When this was found out, they realized Leslie was ready to be extubated (have the breathing tube pulled). It was taken out around noon. What a wonderful day! Now, the next 48 hrs are very important for Leslie to keep her lungs aerating really well. Every 4 hours, she will perform special lung exercises to keep her aveoli opened. Her breathing is very good today...she works very hard. Her temperature reached 38.5 today, which is where the alarms go off. Several factors can be involved. Hopefully, her temp will come down readily. Leslie was up in a chair twice today, an hour each time. It exhausts her.
Matthew and I are so very thankful that this friday is such a gift!! Pray for open and clear lungs, and for no fever! We appreciate all the dedicated and faithful prayers!

Thursday, October 07, 1999 at 08:05 PM (CDT)

Today was another day of progress for Leslie. They took the second peripheral line out of her right hand, so that hand is free now. She wrote that the IV was burning quite a bit. More importantly, her lungs absoluteley continue to improve. They turned down the PEEP on the ventilator to 5 from 7.
She also recorded a white count of 3.9, which is almost normal (4.1-7.5). All her vitals are improving. Watching her pulse on the monitor is a treat. Nice big jagged peaks- around 87/min. Seems like yesterday I would watch hoping it would drop into the 140's. Kathleen, Leslie, and I have communicated(only 2 of us can talk) over the past 2 days about getting off the vent. Today doctors and nurses also spoke of coming off the vent as the expected progression. We are very excited, though Leslie is more tempered than KZ and MZ. Could it be the raw throat?
Leslie continues to burn platelets. Needed 3 transfusions today. They do not seem to give her the bump they used too. They are reacting by requesting the freshest bags available.
Leslie had her nails done today by Kathleen. Purple toes and gold fingers. I don't like the gold.
Leslie is digesting her food well. That doesn't seem so special to me but sure seems significant to the interns. They need to get out more. On that topic, we've had some awesome medical care in ICU.
Leslie smells like poppyseed muffins to me. I have no idea the significance of that comment, so I guess I've run out of update material.
Leslie knows how much she has already accomplished, but really is so eager to get off the vent. A doctor- she has lots, one for every system- walks in and she immediately starts motioning to yank out the tube. Mouth and tongue still raw from radiation and chemo mouth sores.
MZ

Wednesday, October 06, 1999 at 09:22 PM (CDT)

Leslie had a really good evening, night and day today. We were able to go down from 9 to 7 on the PEEP today, on the ventilator. She sat up in a chair twice today! She continues to amaze the entire staff. Throughout the day, doctors, nurses, resp therapists, and others stop by to tell Leslie what a stellar job she is doing. When Julie, the resp therapist, was going home this morning, she shared with Leslie how special she is and doing an amazing job. It is very difficult to tolerate a breathing tube in one's mouth, yet Leslie is so calm and cooperative. We are very happy with every system in her body, but her lungs...which really says alot. We can concentrate on one area, without a conflict of interests. The other areas are all manageable right now. Susan, the intensivist, came in to ask Leslie many questions about her tube feedings and her stomach. Leslie continued to make hand gestures as if pulling out her breathing tube. We all have the message loud and clear. We are definetely hopeful that the breathing tube will come out soon, but we will make no guess on the date...at least out loud. Today Matthew and I celebrated our 15th anniversary. We couldn't tell Leslie enough what a wonderful day we were having...we were beaming leaning over Leslie!! She looked at us like we were crazy. We put ourselves (or tried) in her place: there Leslie is with this big 'ol breathing tube in her mouth, a hose down her nose for nutrition, an arterial line in her left arm (bandaged very securely and in the way, esp since left-handed), IV's in her right arm, her hickman catheter with many lines coming off it, secretions from her mouth, difficult to move, can't speak and her parents chattering and smiling on and on about how great she is. She thinks we're nuts! We are very thankful for this wonderful day. We continue to watch the monitor like a hawk. The next couple of days are crucial for lung recovery!!!
I was reading the guest book ...we definetely believe in touch, reflexology, music, state of mind,etc for the healing process. Also, I have been praying to Mother Theresa...it may not be official, but she is a saint.
I repeat myself: we need African-Americans to be a bone marrow donor, as there are not enough in the National Bone Marrow Bank. The test is free for non-Caucasians, and it only takes 2 tbsp of blood.
One more request that is close to my heart. During these past 2 years, we have met many beautiful children with leukemia. On August 5th, Leah, who was 2 years old, died and received her angel wings. She was very precious. Pray for her and her family. www.onevoiceusa.com is a very special web site.

Tuesday, October 05, 1999 at 10:15 PM (CDT)

Sorry for the late entry. Leslie had a very good day today. We continue to be hopeful that the ARDS does not hold the end result we were told to anticipate.
Last night I called Kathleen very excitedly. Leslie's heart rate was down below 100! Her chemistries re: liver and kidney still looked ok, but were somewhat higher. The BP was much lower, though with much medication. It appeared that a cranial bleed was not imminent. Best of all, they had turned down the PEEP settings- this did not correspond to our expectation. PEEP measures the pressure the vent provides in the lungs between exhale and inhale. Leslie was getting great air exchange with the low settings, had a respiratory rate of 18, and had great oxygen levels to her extremities. The heart and lungs were looking better- lots better!!!
This morning Leslie's blood gasses were much worse. They turned the PEEP up from 7 to 9. While 9 is not an incredibly high setting on the vent, it was very discouraging as it was consistent with what we were originally told. We had been told to expect higher and higher settings until they became harmful. The heart rate was back above 110. A week ago I would have loved this, but last night it was down to 95, so it seemed like a major setback.
At 7pm tonight, Leslie's vitals again look super. My feeling last night was that we were experiencing a real miracle. My enthusiasm is tempered tonight by the higher vent settings, but we are really hopeful. Leslie's heart rate is back below 100 and she was quite active today. Her writing is now very easy to read and communication is good. We had her in a wheelchair to give her lungs a different posture and we are shooting for twice tomorrow. We exercise her legs at the same time. We feel the exertion is good for getting air exchange into rigid alveoli.
Leslie is getting feeding through her gut in addition to the IV feedings and is taking it well. They expected her to have nausea as it has been 4 weeks since food- maybe all the cheating on water and grape soda is paying off!! This was a big concern; we cannot have her aspirate into her lungs. She will also get better nutrition this way.
So continue to pray for Leslie's lungs to heal and. for goodness sakes, go hug your kids right now!!!!

Monday, October 04, 1999 at 10:16 PM (CDT)

Congratulations to every Team in Training member who did the Portland Marathon this past weekend!!! We really appreciate all the money that was raised for the Leukemia Society...exact totals not in yet.
Although Leslie was doing a good job on the vent yesterday and this early morning, she had reached a plateau. She was breathing 30-40, shallow breaths to maintain good aeration, which is indicative of stiff lungs (ARDS). We opted to leave Leslie on PEEP of 7, which was the same as yesterday so Leslie's lungs could heal. She also spiked a temp this morning and they sent cultures. Although Leslie never had chicken pox to our knowledge, she did have a positive titer before the BMT. There is a small chance there was some carryover of this titer. Leslie needed to receive VSIG last night to provide some coverage from chicken pox. Well, it turned out it was to be given IM and was very thick. Then they announced it had to be given in three different doses. Leslie has had to receive many IM shots, which also were viscous. She hated them with a passion. And this time she couldn't even cry or scream. I had them give all 3 at once as fast as they could... My Leslie was so sad. She squeezed my hands, and I hugged her, but it was very hard to do that to her. Leslie is receiving TPN, nutrition thru her IV; but today we wanted to start feeding her gut. So we needed to remove the NG tube to her stomach, and replace it with a feeding tube. This was no picnic for her. I frequently feel like I am telling her that that should be all for the pokes or what not and something else crops up. She frequently needs to be suctioned. Leslie endures so much in just one day, let alone the 2 years she has been doing this nightmare.
Around 11:30am, Leslie started to gradually slow her breathing down into the 20's. Her oxygen saturation was 98 to 100, and her blood gases (to see how her breathing looks on paper) were awesome. We are so very excited...and excited doesn't seem like a strong enough word!!! Thank you for all those prayers!
Leslie has cardiomegaly, enlargement of the heart. She has been on Dobutamine, dripping continously thru her IV. They decided to try her off it today, which I think will be great.
Thanks for entering the photos, Ray. When Leslie is better, she will enjoy seeing them.
Oh, and her platelets are doing better. Platelets, heart, lungs, platelets, heart, lungs....thank you for those down on the knee prayers.

Sunday, October 03, 1999 at 07:46 PM (CDT)

Leslie has had a good day today. She is much more alert than the last time on the vent. She asks for pen and paper, though her writing is not legible. She asks for the suction tube to clear her mouth frequently and also spreads her arms for a hug. While I was hugging her I told her that Christian has called dibs on sitting next to her forever. Especially at movies and restaurants. He's going to have to fight for that one!!!
As we got out of the truck at the hospital yesterday, Christian announced that he wanted to show me something. He pulled up his shirt- you know it- chicken pox. After keeping Leslie away from her brothers for over a month, then letting them visit the night prior, this was distressing. Leslie had chicken pox previously, but no longer carries the titus and is susceptible. We told the docs; it does not seem to be a high priority, though they are reacting in a couple of ways.
Things look great in Leslie's kidneys and liver. As Barb Garlock would say, one stroke at a time!!!
This morning's chest x-ray was worse so of course we continue to worry about the lungs. We feel she is responding reasonably well to the vent and continue to hope that the diagnosis of ARDS is incorrect. The lung picture is a mixed bag. They have been able to turn down the PEEP but had to turn up the oxygen level. Overall I believed the lung issue was better til they showed Kathleen the x-ray. Last night I was more concerned with her blood pressure. They were having trouble keeping it under 150 (systolic) and the nipride they were using needed to go. It was metabolizing into cyanide. Anyway, much to my disbelief, I found myself almost comforted by her lung situation in comparison to her heart.
Kelly Brady, the transplant coordinator, called us last night at 10:30 and gave us comforting hope. She had just returned from a conference in Omaha and reported many unexplained lung problems with marrow patients which do resolve. She suggested perhaps Leslie is in this category. Nevertheless, the clinical diagnosis remains.
We need Leslie's new marrow to start making platelets. She is starting to reject the transfusions. Generally the new marrow makes white cells, then platelets, then red cells. It has been pumping out the white. Come on Marrow!!!! We are nervous wrecks as we wait for the counts (twice a day at least).
The blood pressure is now at adequate levels, though with much intervention. The treatment for graft vs. host and the heart meds are all contributors. Because platelets are a big problem, we are really worried about a bleed, especially in that cute little bald head of hers.
Running fevers again, though low grade primarily. Hopefully symptomatic of some white cells doing their job!!!
We feel we have much to worry about, but gotta stay as strong as Leslie. She tells us she is ready to get of the vent. Indicates she can go it alone (her first attempt at writing was "I want", then pointed at tube, then tried to write breathe). She is so alert.
I was suggesting to her that we develop signs for when she wants something. The suction tube is frequent. I was giving some ideas, like a hand wave, a number , etc. She looked at me like I am stupid (shaddup!!!) and moved her hand in the motion of holding the tube to her mouth. I agreed this made sense! One sign agreed upon.
Lungs and heart, lungs and heart, lungs and heart.

Saturday, October 02, 1999 at 10:02 PM (CDT)

I read the latest entries to see where we were...I am sorry for the errors I made ...was tired.
Our Leslie had a better night and day today. She has amazed the doctors, because she has continually come down on her vent settings. She is breathing more on her own, with less oxygen and less pressure! All of that is so very significant. We are so very proud of her. Her strength continues to make us smile. Although she is sedated quite heavily to allow her to tolerate the vent and be able to relax, she has had very awake times. She is so cooperative, patient and gentle. She is trying so hard.
Her kidney and liver blood levels on own the decline, very close to normal!!! Her heart continues to be working too hard. The echocardiogram essentially saw no change. Her blood pressure is too high, even with several major meds. Her platelets are too low, even after replacement of them. We need to be very careful that Leslie does not have a major bleed anywhere...she needs to retain her platelets. Her temp is 38.0 to 38.2.
I want everyone to know that we are so thankful for this very good day. It is crucial that Leslie can continue to improve each day...it is so tenuous. The boys remarked about Leslie's monitor and the television. We told them we don't need a T.V., we stare at the monitor, which provides us with continuous coverage of 6 different valuable numbers.
Please know we appreciate everything you do, and for each and every prayer you say for our beautiful Leslie!!!!! To my dear PACU friends, thank you for supplying Matthew and I with food when we couldn't and wouldn't want to leave for a second.

Friday, October 01, 1999 at 08:13 PM (CDT)

Leslie started having respiratory distress last night. It continues to worsen. She has been diagnosed with Adult Respiratory Deficit Syndrome (ARDS). The prognosis is quite dark.
I brought Taylor and Christian in to visit Leslie prior to putting her back on the ventilator. We have been told that the probability of coming off the vent is not high. We wanted the boys and Leslie to be able to speak to each other; once she is on the vent she cannot communicate and is to out of it even if she could.
Leslie asked Kathleen and me to leave the room. As soon as we left, Kathleen heard her ask the boys to get her a drink- not allowed before the procedure. That is my Leslie.
She has been very brave today though it has been a very difficult one. She is literally puffing our her cheeks with each breath and has been that way for too long. It seemed cruel even watching her- finally about an hour ago she agreed to the vent. She has not heard the diagnosis, though clearly she understands the gravity of her situation.
We continue to pray that Leslie will get better. We have been told we may know within 3 or 4 days. Otherwise, she will continue to require higher and higher settings on the vent until they become toxic.
I know Leslie can do it.
Leslie looks beautiful. Somehow her eyes have developed a bright blue radiance. Everyone who checks her pupils comments. Though I've always seen her beauty, her eyes never appeared extraordinary. They are now.
Leslie has been very loving today.

Thursday, September 30, 1999 at 01:50 PM (CDT)

Leslie is still progressing very positively. She woke at 1 am very disturbed by the ventilator and IG tube- it drains her stomach. She tried to cry. I told her I'd just cry for both us. The truth is that I was really happy. They had just adjusted her settings down on the vent for the second time and she was handling it well. So, when the docs came in this morning they made her do three breathing tests. She blew so hard on the first set that they could not read the scale. I told Leslie that when her mom got here she would say "yea Leslie!!!' Anyway, she did an awesome job on all three tests. When Kathleen got her, she said "Yea Leslie!!!"- I laughed and I think Leslie did a little to herself. They then extubated her- took her off the ventilator!!!!!
Kathleen told Leslie that she is dyureesing well; I told her she is doing a great job peeing (through a catheter). Kathleen told her she is still afebrile. I told her she is not running a fever. We are having fun, in a relative manner. They warned us that Leslie would have difficulty talking today, but her voice is pretty good. She really wants a drink, but they are making her wait another 4 hours so she does not aspirate into her lungs. She was begging for water on Monday right before she got put on the vent, and her first words were to ask for waterwhen they took her off. This chick is single-minded.
It is very comforting to again have Leslie able to provide feedback. Over the last several days she has been sedated heavily. As a result, we've been turning her frequently, rubbing lotion on her back so wrinkles do not become bed sores, putting boots on her feet 2 hrs at a time (for footdrop), etc. but you never know if you are making her uncomfortable. Much better when she can tell you how a position feels. I will note that it is hard to put someone on one's side and put the bottom arm in a position which looks comfortable and still allows access to the IV's.
Leslie's kidneys are the next hot spot. The creatinine and bilirubin levels continue to creep up. The docs suspect it is medicinal and are scaling back where possible. She is getting a doppler scan of her kidneys this afternoon; as well they are doing another echo of her heart- right now as a matter of fact. Her blood pressure is way too high without medication.
So, kidneys and heart are next on our radar screen and I am HUGELY confident that Leslie will get them on track too!!

Wednesday, September 29, 1999 at 10:27 PM (CDT)

Leslie's chest xray looked better yesterday, and even better today! Her lung problems are multifactorial, so although clearing, there is still some underlying process going on. Leslie went for a Cat Scan of the lungs today to see if we could find out what, which was unconclusive. BUT, we had some great news. Leslie has herpes in her lungs. Don't get me wrong...this can be quite serious, but now we have a cause. Now we can treat it specifically. Now we can start cutting back on the drugs that are doing wicked things to her kidneys. Her kidney blood levels are climbing way too high! We made changes on the vent this morning to allow Leslie to breath more are her own. She loved the new settings, evidenced by her lung pressure and her O2 sats are 96-98%...Excellent! So we are very thankful today for steady progress in the right direction! Continue to pray for her heart,lungs and kidneys; and for continued progress every day. Thank you all for stepping up the prayers! Leslie had Sacrament of the Sick today.
We need your help!! Luther (aka Woody) is in desperate need of finding a bone marrow match. He is an Afro-American; ergo his best match will come from an Afro-American. The test is free and it only takes 2 tbsp of blood. There is a drive on Sat. Oct 2nd at the Blazers Boys and Girls Club on MLK from 9 to 3pm. So please past the word on, post a sign, call a friend. Lets give Luther the Gift of Life!!
Also, thank each of you who have walked in the Light the Night Celebration in other States. The walk here in

Portland is this friday, Oct 1st. Many thanks to Suzanne & Carlos, Sue, Team in Training and Candlelighter friends who will be participating! Sue wrote Leslie today to say that Matt Zaffino will be leading our walk. He will be carrying a special balloon with Leslie's name on it.

Tuesday, September 28, 1999 at 12:35 PM (CDT)

Leslie had a very eventful day yesterday and today seems to be going in the same direction. After the lung procedure they seemed really pleased with her ventilator needs. She needs less oxygen than they expected; she determines the pace of breathing, the vent does not have to do it. That seems really good. The acid levels they look at in her blood dropped immediately after she got put on the vent, so good news there too. So thank you for effective prayers everybody!!!!
They put a tube through Leslie's nose which goes into her stomach. A bunch of stuff came draining out immediately; her blood pressure dropped right away so I think she had an upset tummy. She was really helpful during that because she swallowed every time they asked so they got it seated properly. The bad news, and the reason I'm typing now cause they kicked me out, is that they put a small tube in but now need a larger one. It's going in now.
Leslie's cardiac output is a concern. They did an echocardiogram yesterday. It compared unfavorably to one a week ago. The number they are concerned with dropped from 30% to 20%. The meds that address this increase BP, which is also an issue right now.
Leslie had a three port lumen- allows them to run more IV's- put in her right thigh near the hip this morning. I did watch that. They have many infusions which cannot mix with others, so now she has 6 lines going in her body. She already had the 2 port hickman in her chest and last night they added a line in her right hand. They tried to put a pic line in her arm but were unsuccessful. She also has a line into the artery in her left wrist- they use this for monitoring rather than IV's. They have to check her glucose levels hourly as she now has diabetes and is getting insulin.
I know all this sound so bad, with her being on life support apparatus, but really I do not think the situation is as dark as it may sound. Leslie did not get worse through the night and I sense that is a major victory. Hopefully the heart condition is a result of the lung issue and will resolve as she rests.
We hope to get preliminary results from the lung procedure this afternoon. We are really hopeful she is not septic again- she only had a fever for the couple of hours after the ablecet yesterday so I do not think she has a major infection. For those of you who have not followed Leslie's progress, she gets really sick after the ablecet every day.
I am wondering if she gets enough sedation. Though her eyes are closed she seems to react to outside stimuli frequently. She flinched when getting stitched after the new lumens were added and the doc had given her lots of local as well as a boulus of fentanyl. She wiggles her toes during her foot rub- that's my job- and squeezes my hand when asked. She is able to nod her head yes and no, but of course cannot talk with the tubes and such. I tell her if she wants to cry just wiggle her toes and I'll cry for both of us. She doesn't wiggle.
I talk to her constantly. I just try to describe what the monitors say when the readings are good, talk about what her brothers would be doing now, read her entries from her guestbook, tell her she's my number 1 girl, that sort of thing. We just listened to Amy Grant's Christmas music CD- Leslie has been listening to it year round for a couple of years now. We usually hide it at least for a couple of months after Christmas but she always finds it.
You would be proud of Leslie if you could see her now. She is doing a really good job.

Monday, September 27, 1999 at 04:00 PM (CDT)

Leslie got sent back to Intensive Care this morning. Her chest x-ray is much worse. She has been having more and more respiratory trouble since Saturday night. Ever since 8pm on Saturday, when she was moderately comfortable, she has worsened. They are doing a branchioscopy and putting her on the ventilator right now. We felt so good on Friday when we felt they were not needed.
I know Kathleen called many of you yesterday to ask you to pray for Leslie's lungs to clear. We are quite concerned.
Leslie has been somewhat out of it for much of the morning. She becomes frustrated when she is with it enough to realize that she is somewhat confused. It is almost better when she is totally unaware of her setting. In any case, as she often does, she talks to Taylor- or thinks she is. Of all her conversations, she talks to Taylor as much as everyone else combined. She was mad at him this morning because he kept wiping her lips. Kathleen has just been cleaning blood off them, so she sort of knew. She keeps asking for water and we cannot give it to her because of the surgery. It rots to say no, becasue it seems that she asks for so little. Leslie continues to be stoic. The same cannot be said of her parents. She tries to be comforting; right before the surgery she held my hands and chastised me cause they are so cold. It was sad for me because I know she will not be able to talk while on the vent, and they said they usually tie down the kid's hands so that they do not pull out the tube. Typically, I would say this is absolutely unnecessary for Leslie- she has always been so good with her medical needs, but she really hates help breathing. She is so used to taking off the canula or mask and declaring that she can breathe just fine on her own. She cannot do that with the vent.
Please pray for her lungs to clear.

Sunday, September 26, 1999 at 07:43 PM (CDT)

Every day Leslie gets an antifungal. It is called ablecet. Several times, including last night, she has had significant adverse reactions. Her pulse goes into the 150's, breathing to 50's, temps in the 104-105 range, and rigors. They give her Tylenol, benadryl and demerol prior to the ablecet. The scariest component for me is the breathing. It is incredibly shallow. As Kathleen mentioned in yesterday's update, an intern we really like and who now recognizes Leslie's conditions was on last night. Though she only covers ICU she was kind enough to care for Leslie. She spent several hours with us in Oncology. Leslie's breathing really is quite concerning. We have too much time to read about the various respiratory infections for which Leslie is a likely candidate. While she is having her reaction to the ablecet I invariable get worried that it is more than that. It takes about 2 hours for the significant symptoms to dissipate, but she does not get her oxygen levels back for about 12 hours, and by then it feels like time for the ablecet again. I am burned out on the process. I do not know how she is doing it. I feel like KZ and I are accumulating lots of stress, and we are only there half the time Leslie is. In any case, she continues to be remarkable in the eyes of her father. I keep telling her I want to get in that bed and do it for her to give her a rest, but in the back of my mind I really wonder if I could.
The boys come by and waved to her through the window. It is the first time she has seen them in 2 weeks. Christian told her he prayed for her 4 times in church today. I told him he's got to pick up the pace. I have long felt he has the highest prayer conversion rate in the family.
Today's chest x-ray is not back yet.

Saturday, September 25, 1999 at 08:19 PM (CDT)

I read this morning in Leslie's room that "bmt's are intense and crisis laden." How succinct and accurate!! I hesitate on knowing exactly what to say, because I don't want to get technical, yet many family and friends have asked for specifics. On Thursday, Leslie had a CAT Scan to r/o abdominal abscess. She continued to have abdominal pain that can no longer be contributed to GVH or VOD. The scan showed mild neutropenic colitis, called Tiphlitis. The colitis started when she had no white cells, but now as the white cells return to fight off infections, the symptoms occur. They added another antifungal to her arsenal of drugs, because it is probably yeast causing the problem. Although Leslie is only taking in clear liquids, we have informally put her on 'gut rest'. So far the most part, she is only taking in some water. Leslie's temps spike to 102-103, so they are not as high and not as often. I was thankful that I was there the night Leslie aspirated, because I was able to be with her all night and do lots of "pulmonary toilet". Leslie did a good job, and slowly improved during the night, but was still very short of breath on minimal exertion. Before I left in the morning, I spoke directly to the physician so I could be sure the events were clear and so Leslie could receive the necessary chest xray, treatment, and hypervigilance. I did say 'no' to the bronchoscopy for too many reasons to start to explain. But respiratory distress is what I see every day, and I didn't want Leslie to undergo this procedure. It can always be done in the future if her status(heaven forbid!) requires it. However, Leslie's xray looks markedly worse. She still has effusions that are trying to resolve, the diffuse areas from the aspiration, and a possible infection. The good news is that her white count continues to rise every day, and her breathing is very good. Hopefully tomorrow we will start to see some improvement of the xray. This morning on rounds with the physician and nurses, it was decided that Leslie would remain in the ICU at least 2 more days, since she has become a yo-yo, and returned 3 times. I totally agreed, because the ICU does all the things I know and love, quickly! A couple of hours later I had a dramatic change of heart. Although they have good air exchange in the ICU, they do not have any heptafilters or any appropriate air filtration. Also, every patient in ICU has an infection(it is the nature of the beast), including the other patient that Leslie's nurse had. Alarms went off, I immediately asked for Leslie to be transferred back up to the BMT unit. Everyone agreed, and my favorite resident is on call for ICU tonight. She is a wonderful resource! So......I am all out of breath. Pray that Leslie's lungs get progressively better each and every day, and the colitis clears. My many, many thanks, Kathleen

Friday, September 24, 1999 at 07:32 PM (CDT)

Lots happened in the last 24 hours. I love rollercoasters!!!!
Leslie got sent back to the regular unit last night around 8pm, which was a surprise. She got sent back to ICU this morning. Now she feels great, relatively speaking, and no longer belongs on the ICU. My mission now, which I choose to accept, is to describe the details. Leslie's mission seems to be to occupy every room in the ICU.
Last evening Leslie aspirated herself- got fluid in her lungs, with her MOM in charge at the time I might add- and thus started a little soap opera. Leslie started having major breathing problems. An x-ray showed the additional fluid. The medical team determined that a fungus was now growing. Kathleen said "no, she just aspirated herself and that is why the x-ray is worse. They said "check with infectious disease" He said she needs some type of bronchiosopy tube into the lungs, take samples, drain, etc. Kathleen said, "no, she need to let the aspiration resolve, it is not a new fungus." They said "call in another specialist- I think a hema guy. He talked to me. He said Leslie needs this procedure. He told me the risks. He told me the goal. I told him I have ambivalent feelings about it and told him why. Now he said we should not do it. I said, "I thought you just said we should do it" "You know more about this than I" He squirmed. I asked him to call Kathleen and restate what he told me. She said definitely no. So... we did not do it and now the fluid has resolved and Leslie is her best in 10 days. Afterward 2 nurses and the transplant specialist told me I made the right decision. I told them, "welcome to my bandwagon- where were you when I did not know what to decide?" I was teasing, but it was fun to say. I accused them of being like all these Broncos fans after the last Super Bowl.
Leslie's tongue is a total mess but the rest of her mouth is getting better. Drank some grape soda today. Counts continue to go in the right direction. She has lost much of her fluid weight- lost 6 pounds in the last 2 days. Her face was soooo bloated- not anymore. Her liver was very swollen and has gone way down. They are giving her a pill which really has helped with the itching. The residents in ICU have done a great job. Today has been a great day!!!
I've been telling Leslie that I am getting tired of updating her web page so she has to get up and about soon.
MZ

Thursday, September 23, 1999 at 03:00 PM (CDT)

We just got done watching a wonderful video that Leslie's school- Alki Middle School- made for Leslie. When Kathleen got here this morning we asked Leslie if she wanted to watch it. She said no- she truly has zero energy- but then watched several minutes very intently. It was fantastic !!! Kathleen got a little emotional about 3 seconds into Mr. Little's opening comments. That did not take long. I hope the students at Alki recognize how desperately Leslie wants to be there. The day-to-day routines that her peers enjoy, without knowing that they are enjoying it, are what Leslie wants. When she was hospitalized initially in the 5th grade she really got an appreciation for what many consider mundane activities. Just the mere act of heading for the morning school bus became something she appreciated and I know she looks forward to getting back to school. Has not been able to do any schoolwork the last 10 days. October will be catch-up month.
Leslie's chemistries really are looking good. What we read on the paper and what we see in bed do not match- she is in quite a bit of distress. Abdominal pain, itching, and mouth pain are the main problems, along with sleep deprivation. Dr. Moore discussed ICU psychosis with me this morning- Leslie's situation is common for extended ICU stays.
Leslie is going for a CAT scan this afternoon. The abdominal pain is confusing. It had been attributed to the graft vs host disease, but while that is dissipating in her liver and skin, the pain is getting worse. Skin, liver, and GI tract are the 3 major problem areas and all should be remedied at a similar pace. Several possibilities were discussed- we'll let you know with the next update where we stand.
Leslie continues to get ablecet every day. It rots. Leslie gets bunches of drugs to help prior- the demerol works for a while, then she gets it again. About 10 minutes after the ablecet is all in -the IV takes a couple of hours- nothing works. She spikes her BP, gets a huge fever, and really shakes. Yesterday she was literally- not figuratively- shaking the entire bed. At one point she spun her head toward me and told me to stop, then realized I was 4 feet from the bed. She thought I was shaking the bed. I have not shared this with KZ yet, but I think I almost passed out then. I was scared.
We will stay in ICU a little longer. We were hoping to get back to the 10th floor tonight because Mandy is back on and she really watches out for my Leslie. I feel we might be close to a turning point. The white count continues to climb- at 2.0 now, the bilirubin count is almost normal, creatinine is going in the right direction. Really, the info on paper looks like we want it too, we just need Leslie to start feeling that way. Still breathing very rapidly, especially when sleeping. Sleep patterns are so shallow- she almost seems like she is hallucinating and the breathing/heart rate spike. As soon as she wakes and sits up, she breathes just fine.
Again, thanks to all the Alki folks who expended so much time and effort on the video. Leslie needs to get into those classrooms!!!!!
As those of you know who read the guestbook, Ray Bartlett will be putting more pictures in. I'll drop them off at his house this evening; now we can time him!

Wednesday, September 22, 1999 at 01:02 PM (CDT)

Leslie is resting in ICU; they got her fluid levels closer to balanced and that seems to have tamed her fevers. My last update said she had a fever of 106- it was apparently even higher. She had a 41.5 axillary temp in Celsius, so you multiply by 9, divide by 5, add 32, then add 1(because it was taken under the arm) to get the fahrenheit. Too high!! Anyway, she is floating around 101 now and feels much better.
She is to get platelets and lasix every 12 hours; somehow that did not get accomplished last night. As well, they could not find her TPN- fluid food. All fixed now.
What Leslie really wants to do now is sleep- for a variety of reasons you have to see to understand she gets very little.
White blood counts and neutrophyls are great. The marrow is working. They are increasing her levels of cyclosporin to combat it; fortunately there is room to grow. Her cyclosporin levels are mid 200's and Dr. Moore feels comfortable well into the mid 300's. This enables them to mitigate the use of steroids, which carry their own problems.
Today is shaping up as a much better day than yesterday. Thank God!!!
Leslie is happy and chatty today, but it hurts lots to talk.
MZ

Wednesday, September 22, 1999 at 10:16 AM (CDT)

Back to ICU at 3am. Leslie was running a huge fever- 106F. We were/are really upset because she progressively got worse through the evening and we felt a lack of activity on the part of several individuals exacerbated the problem. She was not getting her IV for hours. Some sorry story about it not being mixed on time. Symptomatic of a distressing lack of urgency at times. Reminescent of her last ICU experience in that as she deteriorated the unwillingness to react was alarming, though in that case I think ICU was inevitable. Not so sure this time.
The person you have providing immediate care is critical and the decision making of the doc as well. Sometimes a parent at the nurse's station does not seem to do the trick. Very frustrating when solutions seem clear.
Zolbe household has no guns. Good thing. It's keeping us off the 6 o'clock news.

Wednesday, September 22, 1999 at 10:16 AM (CDT)

Back to ICU at 3am. Leslie was running a huge fever- 106F. We were/are really upset because she progressively got worse through the evening and we felt a lack of activity on the part of several individuals exacerbated the problem. She was not getting her IV for hours. Some sorry story about it not being mixed on time. Symptomatic of a distressing lack of urgency at times. Reminescent of her last ICU experience in that as she deteriorated the unwillingness to react was alarming, though in that case I think it ICU was inevitable. Not so sure this time.
The person you have providing immediate care is critical and the decision making of the doc as well. Sometimes a parent at the nurse's station does not seem to do the trick. Very frustrating when solutions seem clear.
Zolbe household has no guns. Good thing. It's keeping us off the 6 o'clock news.

Tuesday, September 21, 1999 at 04:17 PM (CDT)

Leslie left ICU last night at 7pm. Very happy to not need their care, but sure glad we had it when needed.
At 2:30 this morning I was afraid they were going to ship her back- her temps got really high again. She had been floating under 101 F but spiked to 104.5. Got it down to 102- with my dreaded ice rags to the forehead- and she feels better today. She is complaining about the mouth sores. I always feel that she is doing better when that is her complaint- I know it is awful but I somehow feel better than with the temps, itching, sore tummy, etc. They switched her from morphine to a different painkiller- fenerol I think- and the itching has dissipated.
Leslie definitely cannot eat yet but she is expressing interest in food. Good sign I believe. Drank some grape soda and some fruit juice yesterday.
We had Mandy as her nurse last night. She is awesome. She was Leslie's nurse the night of the transplant. She is great about drawing cultures ASAP when a fever spikes and is really quick with the meds. It seems like she gets the antibiotics started not only faster than some other nurses but faster than she could get the orders. She obviously keeps the night docs updated on Leslie so that she can react if needed. We really appreciate her.
Leslie's white count is up to 1.3 and her bilirubin count has started down- both good. We feel good that her liver is handling this well. Still not as comfortable with her kidneys. Something seems to be up regarding her discharge which has them concerned (though not alarmed). KZ seems to be on top of it.

Monday, September 20, 1999 at 12:38 AM (CDT)

Again Leslie is a little better than yesterday, maybe alot better. Her chest x-ray was much better; for that we are very grateful. We expect her to leave ICU tomorrow.
Loads of itching from the Graft vs host. Mainly on her torso, back and arms. We are considering an oatmeal bath tomorrow.
Leslie has been getting platelet transfusions every 12 hours; she is getting red blood cells right now. This is her first red blood transfusion in 3 days!!!
White count was up to .7- also very good.
Leslie sat up in bed this afternoon and announced that she was going to take a good look at the part of the room behind her bed. She proclaimed that she should know what it looks like. It's fun to talk to her because she clearly does not remember much from the past week. Many of the ICU nurses have now cared for her, but when they stop in to visit she does not remember them (acts like she does).
Really, today was quite uneventful. Had high temps- always runs around 100-101- we consider 103 to be high- for about 6 hours. Heart rate and breathing were generally good. I was able to provide a sedentary setting by watching NFL football the entire day- the best way for a 12 year-old girl to get good rest is to sit around with dad and football on the tube- well, maybe the Price is Right or baseball can get you to the snooze zone as well.
Take care
MZ

Saturday, September 18, 1999 at 02:03 PM (CDT)

I feel that Leslie is a little better today. Her breathing seems to be more effective- her Sats monitor shows that oxygen is getting to her extremities better than yesterday and they are giving her less oxygen via a little nose blower (they call it a scapula, or something like that- I'm sort of lysdexic with the word).
The intensivist tells us that the fluid in and around her lungs is the same, though Leslie was 1.4 liters better yesterday in fluid output. She needs to get rid of 8.5 more liters. She weighs more than Kathleen!!
Leslie is in lots of pain today. Her throat and mouth are hurting. They turned up the morphine drip cause she won't push the button. They prefer not to turn it up because of several reasons, but she still is not getting that much, so she is fine on that front.
Kathleen and I are going to give her an oatmeal bath tonight- it should help the itching from the graft vs. host disease.
Leslie is better oriented today. She was confused yesterday- I knew it was bad when she let me throw out a soda can without keeping the tab. You see, apparently they save those little metal tabs on the top of 12 oz cans for some class at Alki. She has her brothers watching me like a hawk at home- I am the only one allowed to drink soda- bad role model. Anyway, the boys are under big pressure to collect these tabs- she made them go out on recycling day to collect for her. So when she told me I could forget about the tab while she is in ICU, I knew she was feeling poorly.
Temps come and go- she went a couple of hours with no temp this morning. The high temps are not as concerning as the heart/breathing because you expect it.
Her bilirubin count is the same as yesterday and creatinine is barely higher, so we are encouraged about kidney damage. Her torso is quite enlarged, so liver/kidney issues are still front-of-mind.
Amy and Allison, her nurses from the 10th floor, came by to see her yesterday. I know she really appreciated that- she likes them alot and I think they like her alot too. Allison is going to nights next week so hopefully Leslie will be back on the floor and get Amy during the day and Allison at night. Amy says she has been learning card games so she can play with us (patient load permitting, of course). Amy likes the Grateful Dead, so obviously she displays great character.
MZ

Friday, September 17, 1999 at 04:02 PM (CDT)

Leslie had a good/bad night. On the good side, it was darn near great. Leslie's kidneys were working big time. She "went" 10 times within 14 hours. This was a tremendous relief as lasix was given only once during this period.
On the bad side, and somewhat confusingly, the fluid buildup in and near her lungs has worsened. The stress on her heart is becoming alarming; her heart has a "gallop". This was first noticed 3 days ago but it went away as her heart pace lessened. Her breathing has become very labored again and the heart beat is up again.
Moreover, Leslie had her worst night from a comfort standpoint. She continues to have lots of dreams- talking on the phone alot. The only person I know she "talked" to was her little buddy Stephanie Wright. She also tried to tell someone about the movie Mathilda". She grabs stuff out of the air frequently. These actions are a result of the morphine. Her nurses want her to use more of it. She has not pushed her button in days, but Kathleen and I do. It is important not to be in too much discomfort- I do not know why she will not use it.
Yesterday when I was relating the guestbook signatures to her she liked the girlchoir messages. I may have taken some editorial license when I told her the altos were lost without her. We listened to the girlchoir most of the evening.
For the last three days we have felt that we could potentially move back to the cancer unit the next day; I know Leslie just has to be fed up with the progress. We are constantly, and I mean constantly, working on deep breathing and yet her oxygen readings are gradually worsening. Listening to her gasping is difficult.
She asked for her brothers this morning and continues to be fun to be with, though really she cannot do anything. Even though she released probably 4500 cc's (that's alot of cups of coffee) in the last 18 hours she is still retaining lots of fluid and looks really bloated. The intensivist says he does not care if she looks like the Michelin man as long as she clears her lungs and the effusion just outside her right lung.
The two rashes she has/had both look much better today. Her White blood count dropped to nothing last night but popped up to .4 this am and she had 20% nutraphyls. That is awesome. So...thank you for keeping Leslie in your hearts- good work on prayers last night to get her kidneys working. Lungs/heart are next!!! Please believe Kathleen and me when we tell you that Leslie is doing EVERYTHING she can and really appreciates your help!

Thursday, September 16, 1999 at 11:28 PM (CDT)

Leslie has overcomed many obstacles these past 24hrs. This morning, I was cautiously taking a sigh of relief; however, the day progressed with tense changes. Fluid retention is a major issue. Her kidneys are worse today (bun and creat. are both elevated even more today). Although her xray showed improvement with fluid on her lungs, some fluid has leaked out of the lungs to cause a pleural effusion. Her respiratory rate was 50-60's several hours today...Leslie was working very hard. Another chest xray showed the pleural effusion was no worse. They were considering sticking a needle into the pleural space to drain off this extra fluid...this is a very uncomfortable procedure, and not without its own set of issues. So for now we need to pray for her kidneys to turn around, and have an increase in urine output. Also, so the pleural effusion will resolve. I find it very helpful to be specific in the prayer dept. Last evening, I called 3 special friends from work and gave them 3 specific items to pray for. Out of the blue last night, Leslie voided 350cc of urine, without Lasix. Everyone was surprised, because she has only been voiding 200cc with the water pill, Lasix. Anyway, there are other issues, but I think you get the point. Leslie is very sick, and needs all your prayers. Leslie has continued to be very strong. We are so very proud of her.

Wednesday, September 15, 1999 at 03:56 PM (CDT)

We are still in ICU; we do not really know which way we are headed though. The good news is that Leslie now has a white cell count. I feel like I hear the bugle of the cavalry coming to the rescue. White cells indicate engraftment; the white cells are critical in aiding in the healing process. The cavalry analogy only works, however, if you understand that the cavalry comes with the enemy chasing it (graft vs. host disease). Leslie has many symptoms of GVH. Of course we knew, and to a degree wanted, graft vs. host, but the treatment of GVH is not particulary beneficial to Leslie's current condition. They started steroids today, a day late, because the steroids contribute to fluid retention among other things.
Liver and kidney failure are our other main concerns right now. Leslie has VOD- I think that is venal occlusive disease and relates to the kidneys. The kidneys work fairly well; the issue is getting the fluids to them rather than having them leak into her lungs, tissue etc. They used anfaterasin to combat the sepsis yesterday- bad for kidneys- and switched to abacid today. Probably spelled both rong.
Fevers abated for several hours last night- I was really psyched. She go hot again around 3 am and I took to slapping ice cold compresses all over her head.
The main issue right now is related to her lungs. She is increasingly developing fluid in her lungs; they suggested this morning the possibility of putting her on a ventilator. Of course we hate the idea, but it would give her a respite from the labored work she is going through right now. For example, her pulse was 130's when she lost the temp- what Kathleen would call afebrile- and it is at least 150 all other times. Now, for example. She is huffing and puffing to get air into her lungs, but we are still hoping. Kathleen and I had her sitting up for a couple of hours to try to clear her lungs.
The transplant coordinator was just in the room. Her name is Noreen and she always makes us feel better; she has a perspective of many patients and describes the "normal" conditions Leslie is battling.
Leslie's nurse described Leslie as "VERY strong" during report this morning- I am an eavesdropper- comes to me naturally through the maternal side- Hi Mom!.
She thinks Leslie is strong because she is still able to go to the bathroom, sit up in bed and clear lungs, do foot and leg exercises, etc. She told me this is very rare with kids in Leslie's condition. When she told me I thought she was pumping me up, but she did include it in her shift change report, so ya know it's true.
KZ and I really try to keep her positive, which is not that hard with Leslie, and we try to get her to do body maintenance. She is a joy because she does it without complaint. Even when she asks for chapstick, she croaks out a "Thank You". How did I ever get so lucky!!!
MZ

Tuesday, September 14, 1999 at 12:01 AM (CDT)

Leslie was transferred to ICU this evening. She is apparently septic; monitors and staffing levels enable ICU to better address any complications.
We are under the impression that bone marrow patients do frequently require ICU care, nevertheless it is certainly not good. Stuff like pneumonia can come on very quickly right now.
Leslie was alert but quiet and in bed, quite uncomfortable, all day. She felt miserable.
She had very high fevers, developed a rash everywhere, and has lots of extra fluids in her tissue.
Kathleen is with her; it was my turn to stay- get to stay more like it, but KZ is the nurse and I feel helpless at the hospital.
So... hoping this is a bump in the road for Leslie. She does not remember her previous ICU experiences. I wish I did not either.
MZ

Monday, September 13, 1999 at 03:06 PM (CDT)

Today is not a good one here in room 5. We anticipate Leslie will be moved to Intensive Care later today; they believe she needs more acute care than is possible here.
Taylor, Christian and I came to visit last night at 8pm. Though the boys cannot go in her room, we thought we'd each buy her a small present, bring a bunch of balloons, and try to cheer her up. We were not prepared for her demeanor when we arrived; she smiled through the window but anything more was too much. We knew she was having a bad day, but it was worse than we were ready for.
I replaced Kathleen at 6:30 this morning; Leslie's pulse has been between 150 and 160 for all of the morning. She continues to retain too many fluids- they are leaking from her vascular system into the soft tissue. Her blood pressure is 90/50- too low. They are giving her albumin and will then give her lasix again. After that she'll get more red blood. Apparently getting this fluid situation under control is difficult. We do not expect those three steps to do the trick, though they should help.
She is also septic. They just discovered this via some test on her urine. Kathleen (she is here too- came back cause I was too nervous alone) seemed fairly certain last night that she was septic and asked the nurse to respond accordingly. Long story there, filled with residents with active viruses and late shift trials, so won't get into it.
Leslie has developed a rash pretty much everywhere. Her face has way too much fluid and her lips are very swollen.
She continues to be a great patient!!!!! In fact, the one reason the doctor gave for not moving to ICU immediately is that she is handling this well. We want to stay here, if only for psychological reasons- it makes us feel like she is doing better. Her past ICU experience ranks as the worst time of my life, though she cannot remember much of it.
These are the moments when you realize how lucky you are to have such a child.
MZ

Sunday, September 12, 1999 at 08:50 PM (CDT)

It is definetely more difficult to put in an update when Leslie isn't feeling well: actually she feels lousy! She had a restless night sleep, then started the day with a temp 104.4. She has continued to have a high temp the majority of the day. Her blood pressure is low and her heart rate is high; ergo when she gets up to go to the restroom she immediately feels dizzy.
I spoke at length with Dr. Moore. We are watching very closely for signs of infection...actually there are signs, but so far nothing has been growing in the blood cultures they do every day. The second concern is VOD (the liver congestion) from the radiation. Her bilirubin (liver enzyme) is high, as well as her weight gain. She is receiving Lasix, to help remove the extra fluid from her body. To be honest the nurse in me wants to go on with the details, but suffice it to say that Leslie has some hurdles to jump...rather high hurdles.
I was ready to sign off, but I glanced over and saw my newsletter from the Leukemia Society. It read: "From the first Oregon Chapter's Team in Training (TNT) program in '93 through the Anchorage Team '99, we have raised over $1,000,000 for the Leukemia Society." The Portland Marathon is October 3rd and there are 24 TNT marathoners! They accept donations for several more weeks. Most marathons around the U.S. have TNT members, that are doing it to raise much needed money for the Leukemia Society and research.
Also, there is a one woman movie called "God Said Ha!" Julia Sweeney (from Saturday Nite Live) speaks for 90 minutes about her brother, Mike's experience with cancer, and her bout with cervical cancer. It is to come out on video this week. I think you would really enjoy it. Matthew and I saw it several weeks ago, and we both liked it.
Sorry if I rattled on too much. Please continue strong prayers to fight the VOD, and prevent any infection. My heartfelt gratitude, Kathleen

Saturday, September 11, 1999 at 03:36 PM (CDT)

Last night I really suprised everyone. I was up for a couple of hours, more like 7 hours, riding the exercise bike, doing homework, playing games, and being on the computer. That whole time I had a fever! When I got in bed, after all that excitement, my fever was up to 38.8 celsius. They don't tell us farinhiet here so I'm lost when they say celsius but I know 38.8 is definatly above normal. I also got the chills and couldn't stop shivering. Kerry, my nurse,put a warm blanket over me and the chills went away, but the fever went higher. That is expected at first with the warm blankets but I felt like I was in a fire! Anyway the fever went down eventually with cold rags placed on my cheeks. I got really mad at my dad last night because even after the fever had gone down it wasn't normal so he wanted to put more cold rags on me. I told him when it comes to fevers Mom is much calmer and doesn't sit on your bed the whole night worrying. (now I thing he's trying to be better but I think he'll always be a worry wart)
This morning wasn't so great either. My throat hurts so much every time I swallow I want to scream, but it hurts even to talk so screaming is impossible. I have more mouth sores today, boy do they hurt.
The doctor said I am gaining too much water weight so they are giving me lasix so that all the fluids that go in, come out.
Overall I've just felt tired today. Not wanting to sleep but not wanting to do anything either. Tonight there is a reserved hall for BMT patients so I might go down there and get my exercise down that way instead of on the bike.

Friday, September 10, 1999 at 04:35 PM (CDT)

Leslie really has not eaten for some time; the dietician came in the room several moments ago to ask about eating. I told her that Leslie has been eating tic tacs for the past day and just had some ginger ale. The dietician seemed really excited by this. That gal must be one cheap date!!
Leslie continues to have her fever. She also gets shivers frequently; Jill is her nurse today and is concerned that it may be a result of IVG- a new drug started today. It's a blood product so it can cause a reaction. My offers of cold compresses cause quite a reaction from Leslie. She let me know that MOM is way better in dealing with fevers(When I do compresses I basically give her an ice bath). Apparently I worry too much. Well.....as the learned Doctor Steve Martin used to say, Excuuuuuuuse Me!!!!!
Leslie doesn't have much nausea recently. That is good because she was tiring of my stupid questions. The last time she threw up, I politely asked if she felt sick. She told me, "No Daddy, I just wanted to be sure my digestive juices are still working right and thought I'd examine them closer." I took that to mean that she did not feel too bad.
Did a chapter of math this morning. It took a couple of hours. I think I got most of it right- naw- just kidding. I got a couple wrong. Seriously, it is taking lots of time to do the math, but we have time! Leslie is taking algebra and I remember how hard it was for me at first. She seems to be getting it faster than I did.
Leslie's favorite activity seems to be talking to her brothers on the phone. She and Taylor chat every night for half an hour; Taylor and Christian really seem to enjoy it too. I think the chance to talk to someone other than "moi" is a relief.
For the medical analysis containing appropriate nomenclature, today's update is lacking. She is doing really really well. I've been teasing Kathleen about her updates. My beautiful blonde bride loves her medical acronyms. I just love alliteration.

Thursday, September 09, 1999 at 02:08 PM (CDT)

Well, all the symptoms that we were warned about are coming to fruition. The diarrhea and the mouth sores havc increased. The morphine PCA was started: Leslie pushes the button and she receives morphine. Instead of waiting for the pain to start, ask the nurse, wait until it arrives, and then give her a large dose of pain med...it is much more controlled this way.
Leslie's bilirubin is up. Due to the radiation, they watch for signs of VOD (veno-occlusive disease), which has to do with liver congestion. Anyway, they started her on Urosodial to help prevent VOD.
Last night at 10pm, Leslie spiked a temp of 103. They started her on 2 antibiotics. I did cold compresses for 1 1/2 hours last night...she was sooooo hot. I ran into Julie R.N.{a friend as well) in the hallway last night as I was getting more ice for the compresses. She asked how everything was going, so I told her about Leslie's temp. She reassured me that it is very good, and it meams everything is working as it should. I felt somewhat better.
Leslie's Hb/Hct is 6.7/18.8, which means she is getting some PRBC's(packed red blood cells). Leslie's blood type before the transplant was O positive, now she will become A positive(the donor's blood type). The PRBC's today were still O positive, yet the platelets she had the other day were A positive. So until the engraftment of the new bone marrow, there will be some mixing. Interesting, I thought.
So, Leslie is hanging in there. We just checked her temp, it is 102.4. Dr. Ted Moore was here also and said everything is progressing okay. So keep the prayers coming and Leslie will keep working hard.

Wednesday, September 08, 1999 at 01:17 PM (CDT)

Last night didn't go too well. Since my plateletes were 25 they decided I needed more. So I got 1 bag of plateletes. My stomach started to hurt really badly about 10-15 minutes into the transfusion. After benadryl and reglain it went mostly away. We don't know if it was a reaction to the plateletes or what but all I can say is it was the worst my stomach has ever felt.
Today has gone really well so far, except for when they woke me up JUST to weigh me. I was really ticked off. I finished my algebra from yesterday and played my gameboy.
My plateletes are now up to 51 and my h-h is 8.9 and 25.3 and the white count has bottomed out at 0.0
The thrash on my tongue has not completely left but it's better. I am developing a couple of mouth sores and my gums are starting to bleed. Dr.Moore said he might have to start me on a PC pump if they get much worse.
It's really sunny and windy outside and I feel up to going out side. But it's a big NO NO. We have been hanging lots of pictures and stuff on my wall because the fish wall paper I've memorized. The Portland Symphonic Girl choir banner is hanging above my bed and a huge poster from my life science class is next to that.

Tuesday, September 07, 1999 at 02:05 PM (CDT)

For the medical update: wbc-0.1,Hb-9.4,Hct-27.6,Plat-25k The chemistries look good. No abdominal distension. Afebrile. Vital signs stable. Still has thrush (fungal infection). Diarrhea just started (inevitable, but a bummer). Had a bout of nausea/emesis at 10pm last night, and 9am today (not too bad!).
All and all, the last 24hr have been very good. Leslie had some quality awake time yesterday...chatting, doing her email, riding her bike, took a shower, did some homework, played Tangoes and cards. This morning she felt a little under the weather, but is up now. As a matter of fact, Leslie was riding her bike when Dr.Ted Moore came in to assess her. He told her that he was very proud of her and to keep it up. She was beaming.
Our favorite song for the day is From a Distance by Bette Midler. Leslie has been singing with the song...which I just love!
I am off to be with Leslie. Love, Kathleen

Monday, September 06, 1999 at 05:15 PM (CDT)

A little more activity over the last 24 hours, though now all is calm and serene in room 5. Last night Leslie had some type of incident where her mouth became irritated, her tongue became swollen, and she could not help biting her tongue and cheeks. Initially, she could reduce the symptoms by rinsing her mouth; it was quite eerie as over a period of one or two minutes her tongue would again balloon and she would be with an extraordinarily heavy affect. Both day nurses, Amy and Allison, were quite puzzled. It went away after 2 hours, returned with less severity, then ceased. Perhaps an allergic reaction of some type; though from what we do not know. She has not eaten a thing in a couple of days and no new meds were being used. Scared us cause we were afraid of blocking her airway. Both Leslie and I remained relatively calm, though we both admitted later that we were freakin just a bit.
Leslie feels very chipper, though she paints the floor every couple of hours. She feels nausea just seconds before she..well too much info... but always feels fine seconds later. Darned if I understand the girl.
We just got done playing our nurses in Boggle. Allison is good, Amy is quite bad.

Amy is Leslie's pimary and is orienting Allison. Because Allison's training is nearly over she has been Leslie's nurse the last couple of days.
They played games yesterday too, though Amy has more time- being the trainer and all.

Sunday, September 05, 1999 at 12:55 PM (CDT)

Leslie had a nice evening yesterday. On friday, I had met with Leslie's Advisory teacher at Alki, Mrs Bevill. She had arranged for me to meet Leslie's teachers for the school year. Each teacher went over with me Leslie's assignments. It was wonderful to get to know them. They are very supportive and going out of their way to ensure Leslie has a good year at Alki, even if just in spirit. So last night, Leslie and I talked about her teachers, the different subjects and assignments. She was very elated, with many smiles.
At 10pm, she began not feeling well...very nauseated, so she received some medication and went to bed. She is dosing on and off this morning, trying to sleep thru her stomach hurting. The nausea may be turning into pain. Every child here is givin Morphine, to help get the child thru the effects of the radiation. We will watch.
Leslie's room is decorated with cards, banners, balloons and such, but we haven't put up any photos yet except the one we hung up on the day we arrived. On the bathroom door [it is a focal part of the room], is a picture of a bouquet of flowers colored by my brother, Jeff. It says "to Leslie love, Jeff." Next to this picture is a photo of Uncle Jeff, with a huge smile. For everyone that hasn't had the fortune to meet my brother, he is a great guy!
Leslie has a sign hanging on her door, telling of her favorite things. For her favorite activity, Leslie wrote 'outdoors.' Knowing that, you can imagine how hard it must be to be couped up in a room, yet she does a great job. Which reminds me, many friends have been asking when they can come see Leslie. Leslie's white cell count is extremely low, because of the chemo and radiation. The later was necessary to get rid of the leukemia, and to take her immune system down to 'nothing' to prepare for a new immune system. The WBC's [white cell count] are what fight infection, ergo Leslie has no arsenal to fight any infection, and will not for some time. She will be in the hospital for about 3 months, and during that time her only visitors will be Matthew and myself. Her brothers cannot even visit, especially since they started school and all the possible exposure to germs. Even after she returns home, she is supposed to be kept isolated for a year, except for her family. However, Leslie enjoys all of her friends and family keeping in touch in whatever way works best, ie, letters, email, and eventually the phone.
Leslie is waking up, so I am off. Love, Kathleen

Sunday, September 05, 1999 at 12:55 PM (CDT)

Saturday, September 04, 1999 at 01:29 PM (CDT)

Yesterday was sleep day. Leslie was feeling "yucky" all day. With my powerful command of the English language, I asked her "throw-up yucky or just plain yucky?". the response was "Yucky". So there you have it.
They told us her feelings of nausea are probably still from the chemo and will likely diminish, and indeed that seems to be the case. Leslie is still somewhat tired today, but certainly more active. We've been playing cards and she has been answering E-Mails this morning.
She started on the IV feedings late last night. Appetite is an issue. Yesterday she was able to get some cake down- big surprise there- but nothing else. Exercised once, but I am sure today will be better in that regard.
Counts are beginning to drop. Her white count dropped in half during the last 24 hours. Her H & H is 9.9 and 28. I would think she is still a couple of days away from transfusions. Blood pressure and temp are great!!!
Taylor came by with Alex Bartlett and his parents last night. Leslie was bummed because Taylor could not come into the room. Mark Johnson also came by- he helped, with his wife Tammy, at the marrow drive. Mark works down in the ER and was a phlebotomist for us.
Among other presents, Leslie got a gift delivered from Diane and Mary Topping. I went to college with Diane- a ravishing woman who somehow saw something in Larry Topping. Now that I see the name change I get a better understanding of some of his college behavior- though not all of it, I assure you!!!(I assure all reading this that Larry is QUITE capable of both taking AND providing some good natured ribbing. AND he is a fellow who kicked cancer's butt a couple of years ago.
Overall a great day at OHSU. Thank all of you for your prayers for Leslie. She loves to read her guestbook.
MZ

Friday, September 03, 1999 at 02:42 PM (CDT)

Leslie's grand night started with a bang. Outside her hospital room around 9pm, we saw spectacular fireworks! They lasted for 15 minutes, and were beautiful! Leslie felt good all evening, busy on the Internet.
At 1:20am on September 3rd, the Bone Marrow Transplant started. Dr. Ted Moore, Julie R.N., and Mandy R.N., I and our special Leslie were present. There was an hour of preparation going on in the room to be sure everything was ready, and for in case of's. Leslie's vital signs were taken every 5 minutes of the first 30 minutes and then every 30 minutes for a couple of hours. The bone marrow (216cc) infused over 1 hour. Except for a 5minute bout with nausea, Leslie felt great the entire procedure. Her vital signs were stable, and no signs or symptoms of any adverse reactions. It went great!!!
Leslie slept the rest of the night quietly and comfortably until 10am, when she awoke with stomach pain and nausea. It persisted. 4 different drugs later, we were able to get on top of it. She is sleeping right now.
Her appetite is quite poor, although she tries her best to eat. Later today, TPN (total parental nutrition- food thru the IV} will be instituted. It will take the pressure off Leslie to eat when she feels miserable
As I look over at Leslie, she looks like an angel...no surprise to any of you. Love, Kathleen

Thursday, September 02, 1999 at 04:52 PM (CDT)

Todays the day! My parents talked with lots of newscasters. My dad is lying down now and I'm wondering if that's 'cause he turned 40 today!
I'm feeling pretty good today. The transplant will be about 1:00am. They will take my temp. and blood preasure about every two minutes so I'm sure I won't get much sleep tonight(I usually don't anyway)
They've put an exercise bike in my room now that my counts are getting low, so I'm about to go give it a try. Talk to ya tomorrow.

Tuesday, August 31, 1999 at 10:03 PM (CDT)

Leslie tried to update her page several times today but the internet access at the hospital can be somewhat balky, so I'll give a progress report.
She slept really well last night- they constantly pump fluids in her to protect her kidneys and bladder so typically she has to get up many times throughout the night. While it is better when I am there rather than Kathleen( I get out of bed to unplug her IV pump, offer encouragement, generally provide a positive approach, and, well, Kathleen sort of sleeps through... I digress, sorry)- anyhow she "held" it til 4 am- was QUITE proud of herself. First radiation was a 7:15am and went well.
They keep sending transportation for her but she prefers to walk there- it's not too far but it is in a different hospital so it is some distance and gives needed exercise.
She takes her Shania Twain CD- the woman radiologist really likes Shania now, but the fellow, an older chap (I'm in my thirties- KZ is not- she may disagree with the "older" part) hasn't starting tapping his foot yet. Leslie plays it "LOUDLY". She is definitely 12.
Ate well today- waffle for breakfast and mom's macaroni and cheese for lunch.
I was leaving just as the girls left for the afternoon tanning/radiation session (she looks like she's been at the beach for a couple of days).
Leslie played Dad in spades, gin, Scrabble and Boggle (a great game- get it). Beat me at Scrabble but, trust me, I helped her alot. If she disputes that, do NOT believe her. And anyway- she did not win by very many points, so what IS the big deal?
We learned that the marrow will arrive at 7:15 pm on Thursday. They will deplete the red cells- takes 5-6 hours. Tranplant at 1am? Somehow KZ has wormed her way, schedule-wise, to be the parent present.
The donor is excited and feeling healthy!
MZ

Monday, August 30, 1999 at 09:04 PM (CDT)

Today I had two rounds of radiation. Dr. Moore said thst most patiants get the sickest on the first round which didn't happen to me. After both rounds though I came back and slept.
My appitite is not to good. I had hamberger Helper, a couple spoons full, for breakfast and lunch and I don't think I'll be haviong anything for dinner.
Tomarrow and Wednesday will be more radiation. Then thursday late night or friday early morning will be the big day!

Sunday, August 29, 1999 at 09:52 PM (CDT)

Yesterday went pretty well. I got sick to my stomach by the chemo and they gave me some adivan which didn't help so then they gave me benadryl and reglan and that really helped. Today was about the same but I got sick earlier and have been able eat a little bit later in the day. I'm still able to get out of my room so I took some long walks around the hospital. I'm still able to see my brothers so we've been doing things together alot.

Saturday, August 28, 1999 at 12:36 AM (CDT)

Today I got admitted into the hospital. Nothing has really happened. They started me on some medications that will help fight infection. The drugs are diflucan and allopurinol (sp?). Since 3:00pm I've been on fluids to help get the chemo out as fast as possible. The chemo starts in the morning tomorrow and I will get it on Sunday as well.
I'm feeling great. Taylor and Christian spent the day at the hospital with me since my mom was at work. We pulled each other in a wheel chair, a HUGE wagon, a tricycle, and a go cart. Tell me we weren't annoying!
My Dad says sorry for the typos on the last entry. What a geek! Just kidding Daddy.

Tuesday, August 24, 1999 at 04:27 PM (CDT)

Went to OHSU today to discuss last week's test. We heard on Friday that the blast level was still high- 7%. We did not put the info hear because we really were not sure what the next step was and did not want to alarm Leslie.
We are in agreement with our transplanter that we should proceed with the transplant. We are not confident that additional chemo therapies will significantly reduce the level of of blast; indeed the levels may increase. We know that this leukemia is not particularly reactive to the chemo drugs to-date.
As well, there is always disease in a transplant candidate, though perhaps not detectable. Otherwise one would not undergo a transplant, n'est-pas?
Leslie will be admitted on Friday, with chemo and total body irradiation to precede the transplant. The transplant will occur late on September 2.
Leslie feels great right now. She climbed Beacon Rock over the weekend, went biking, rode her bike, etc. She goes into transplant feeling really great.

Wednesday, August 18, 1999 at 11:38 AM (CDT)

The aspiration went well yesterday. We got a call with the preliminary results from her doctor last night. He looked at one smear and said it looked like a marrow in remission. They did a biopsy, or at least will do one, on another smear, with results expected tomorrow. In any case, he seemed quite confident that the biopsy will support his diagnosis, so we are really psyched.
There was plenty of other medical terminology that he threw at me, but essentially my takeaway was that he saw very little blast (remnants from the leukemia)- I guess that's good cause it means there wasn't too much stuff to kill- and lots of red markers- she'll be making plenty of red cells now that her marrow is up to speed.
We had a good laugh when Leslie got home- I guess she was in a hurry to leave the hospital- she was home by 5pm- procedure was at 3:30. Anyway, she stood up a couple of minutes after the procedure, but still VERY much affected by anasthesia. Took off out of the unit stating that she was going home. The nurse called her back but she refused. Kathleen felt she needed to assure the nurse that she'd take care of Leslie (the nurse- a good one; we've had her before- was calling to Leslie that she needed fluids, etc.) Anyway, Kathleen knew she couldn't hang with the nurse cause Leslie was LEAVING and wasn't really "with it". Ran out and caught her before she got on the elevator- thank goodness because it does not sound like Leslie was totally cognizant of her surroundings.
Back tomorrow for neural testing. Nothing invasive, we believe, but probably a 6-8 hour hospital day.
MZ

Thursday, August 12, 1999 at 10:58 PM (CDT)

Good news: a woman that I work with is being worked up for higher resolution, to be a potential bone marrow match! She donated at our bone marrow drive in Vancouver! So far, she is the first person to be called back for this finer testing. She will know in about 2 weeks whether she is a match for a very special person or not.
Leslie's physician called today to notify us that he wants to do her next bone marrow aspirate next tuesday at 3:30pm. This testing is crucial in identifying that Leslie is in remission.
Leslie is feeling great today. Today is her best friend's birthday, so she is spending the day with her. Leslie was thrilled with the opportunity to spread her wings a little bit. Her white count is 1.6, which is low but so much better. We are being very cautious, so she doesn't get an infection.

Tuesday, August 10, 1999 at 03:49 PM (CDT)

Today I went to the doctors. My counts are still WAY down but not low enough for an infusion. Since my white count, the one that fights infection, is coming up now I'm allowed to go places! My appetite is not too good but the doctors aren't worried so neither am I!

Sunday, August 08, 1999 at 02:57 PM (CDT)

Ever since that ugly episode wednesday morning I've been feeling great but still can't go anywhere. It gets pretty boring having to stay home all the time. Yesterday my parents did give in, after I begged and begged, to let me go to the book store and library.

Wednesday, August 04, 1999 at 05:37 PM (CDT)

Just got back from the doctor's with Leslie- she tried to update on Monday after her appointment, but she got disconnected after three tries and gave up- disgusted- wrote lots too so it was a shame!
Anyway, Monday's counts were not too bad. White was .2 (normal range starts at 4.1), but we knew they'd be low. Platelets at 22,000- normal starts at 225,000. H&H were 9.8 and 27. I forget normal but those are way better numbers than the white and platelets.
Today's counts were about the same, though platelets were down to 15k; she got a transfusion.
Sunday night and last night were both uncomfortable nights. On both evenings Leslie developed very low grade fevers; not bad enough to take her in but bad enough to keep Dad from sleeping (Leslie had insomnia last night and claims I seem to have slept well).
This morning, she had a fever from 4am until about an hour before our appointment; it went away. She was bubbly and cheerful in the office, so who knows.
Got home, said she was going to take a nap and I got on the computer. Just now Christian came in and warned me never to get in a jump-rope contest with Leslie, or hula hoop for that matter. She apparently struggled out back from bed and beat him in both. All is well!
MZ

Sunday, August 01, 1999 at 02:31 PM (CDT)

Leslie feels great! She lost 6 lbs. in the hospital, but is readily gaining it back. She woke up this morning with a cold sore, so I started her on acyclovir right away. Since her white count is terrible, we want to ward off any infections......Did I mention that Leslie is verrry cute!

Saturday, July 31, 1999 at 11:37 PM (CDT)

Friday I went to the doctors and I got alot of blood tests done. I guess they were all good because I did't need a transfusion of blood or platletes. I'm feeling great, I've been out rollerblading and biking all day long. I'm not really supposed to be going into to many public places because my white blood count is practicaly at nothing, which is kind of a bummer.

Monday, July 26, 1999 at 07:41 PM (CDT)

Leslie came home from the hospital today. She'll go back on Friday for blood count tests; we anticipate transfusions a couple of times over the next 2 weeks, though perhaps not this week.
Leslie will get another bone marrow test when her counts recover.
We'll keep her close to home as she will have high susceptibility to infection; they do not transfuse white cells- just red and platelets. She'll get growth factor shots which ostensibly get the white to come back sooner; I am not so sure. The shots do act as an inhibiting factor on the red and the platelets, so I question the shots (today's opinion from Dr. Zolbe).

Friday, July 23, 1999 at 01:26 PM (CDT)

Getting my 2nd day of chemo today. I will get 5 days worth oh, I did not mention that my schedule got changed.
The results of my bone marrow aspirate were not what we wanted. I am only in partial remission, so I will not get my transplant on schedule.
The doctor said I have 10% blast in my marrow. If you are in remission, it will be 5% or less. 10-25% is partial remission- that's me.
I will get 5 days of chemo, then they will wait for my counts to recover. The new transplant date is Sept. 2. That is also my dad's 40th birthday. The original date of July 29th was my mom's 30th birthday- so she says. Anyway, obviously having the transplant on dad's day is a tremendous omen.
This chemo I am getting makes me SICK!!!! It is called ifosphomide and vm16. They pump fluids into me so I have to pee all the time. Very hard to sleep!
My father is a great comfort to me. I wish mom would visit occasionally(just kidding mom).

Friday, July 16, 1999 at 07:57 PM (CDT)

As most of you know, my mom and I are back home because they have found a perfect bone marrow match which is a 6 out of 6. I am scheduled to have the bone marrow transplant on July 29th at OHSU, Oregon Health Science University. I know most of you are thinking that it is an answer to all the prayers that have been said and I think you're absolutely right. On July 20th I will under go surgery to have a bone marrow aspiration. Why? To make sure that the leukiemia is gone and that the transplant will work. I get admitted into the hospital on July 23rd. Why so early? Well it's because in preperation for the transplant I will have radiation and chemo. My mom will probably stay with me for the first couple days of radiation and chemo. Since Taylor and his team won the district 4 tournament in a baseball they will go on to the state tournament. My dad will be with him in Seattle cause he is a coach. Christian will stay with the guys at the tournament. Taylor is the pitcher and he is really good I guess.

Friday, July 09, 1999 at 07:52 PM (CDT)

While Leslie was preparing to have her cord blood transplant, which was a 4/6 match, we received news that there is a bone marrow match [ 11/12 match]. Although there was conflicting information, we decided to return from Duke, North Carolina to OHSU for the bone marrow transplant. Time is of the essence, because Leslie has been off chemo in order to be strong for the cord transplant. We are praying that the BMT donor can be found readily and can donate very quickly. Leslie is feeling great and getting lots of exercise.

Tuesday, July 06, 1999 at 01:14 PM (CDT)

We started this website so we can keep everyone updated on our Leslie. Please know how much all of your support has meant to our family... you all have been wonderful!! With the help of our friends and family, I raised 1ok for the Leukemia Society. In total, the Anchorage Marathon participants in TNT raised 10 million to help find a cure. We also wanted to take this opportunity to reach many of you who helped in our AWESOME bone marrow drive! We were so very thankful to live in such a giving and special community. 4400 new members in the bone marrow bank! Plus, I know many have since donated their blood in Leslie's name. Many lives will be saved because of you. Thank you for all the prayers said in Leslie's name: please remember her daily as she enters this transplant. Again, thank you so very much for all of your support,friendship and love.

Sunday, July 04, 1999 at 04:49 PM (CDT)

mom and I arrived at 2am tuesday 6/29, after travelling all day on monday. We were at the clinic at Duke all week getting worked up for the cord blood transplant. They did vials and vials of blood tests, 2 different urine tests, pulmonary function test, chest x-ray, ekg, echocardiogram, consults with a variety of staff in different departments, that we will be working closely, and three history and physicals. Much more later!

Saturday, July 03, 1999 at 08:27 AM (CDT)

This page has just been created. Please check back for additional updates.

Click here to go back to the main page.

----End of History----