Hannah Evans' Home Page
Portrait By Lisa Winslow-Ziemba, Santa Maria, California.
Hannah Evans - 6 Years Old - Born April 5, 1994.
Hannah's Fight With Leukemia
Hannah, our youngest daughter was diagnosed with ALL (leukemia) on Wednesday, April 9th, 1997. We rushed her that evening to Children's Hospital in Los Angeles where she has undergone extensive treatments over a 16 day period to arrest this awful disease. The treatments included: Chemotherapy for the leukemia and dialysis and radiation therapy for her kidneys that have been clogged up by the leukemic cells and were a real source of concern for us. To complicate this further, the doctors have had to watch her heart as she has a partial ASV defect that was a birth defect common with Down Syndrome children. Certain Chemo drugs can adversely affect the heart so Hannah was watched for this as well. During the week of April 21st, Hannah has made very rapid improvement. Her kidneys cleared up, are functioning normally and the renal doctors took her off the daily dialysis treatments. Her recent bone marrow biopsy came back negative for leukemia "blasts". Her pretty long blond hair is now coming out in clumps. On Friday, April 25th, she, her mom and Sonia, her grandma, finally came home from Los Angeles. After she came home, she developed severe diarrhea. Since Monday, April 28th, was to have been her first out-patient chemo-therapy visit at Santa Barbara's Cottage Hospital, we thought they could check her for dehydration at the same time since the diarrhea can sometimes cause this. Once down there, and after reviewing her lab results, they verified that this was the problem and immediately felt she should stay in the hospital until they could correct it. She came home from this first visit at Cottage Hospital on Tuesday, April 29th. After a few days of relative stability, she developed a fever of 102-F late Thursday night on May 1st. At 1:30 AM on Friday, May 2nd, Libby took her to Marian Hospital in Santa Maria for an immediate infusion of anti-biotics as she had no defenses left against bacterial or viral infections which, in her case, could be fatal. (Her white blood cells were non-existent because of the chemo-therapy}. After this, she drove Hannah down to Santa Barbara to Cottage Hospital where they have begun treatments for both her underlying leukemia and the horrible complications from the chemo-therapy. She is down there now in the pediatric wing in room # 53. Sunday, May 4th update: Although she no longer has a fever, Hannah is requiring blood transfusions for platelets and hemoglobin. The chemo has suppressed, apparently, the normal function of the bone marrow to provide these. Her white blood count has stayed on the bottom at .2. This is worrisome for the doctors there as she could develop almost any type of opportunistic infection at this point. Friday, May 9th: Hannah is still at Cottage Hospital in Santa Barbara. Today, her bone marrow was checked for any more sign of leukemia. Apparently, the results came back that there were no leukemia cells in her bone marrow. Although this is a very good sign, the doctor is concerned that her bone marrow is still not producing the normal cells her body needs. The doctor is also worried that Hannah may have a different sort of leukemia that what was diagnosed in the beginning at Children's Hospital in Los Angeles. We hope this is not the case as the ALL type is the most treatable form of leukemia. She is still needing daily blood transfusions and her white cell count is only .3. Libby is down there now with her. Sonia, Libby's mom, stayed with her from Monday night through last night, Thursday. Libby will probably be with her until Monday night when Sonia will go back again to take her place so Libby can come back to work. Saturday, May 10th: Libby reports that the basis for the doctor's concern about Hannah's diagnosis maybe not really being ALL or the typical childhood type leukemia is that Hannah has been so slow to recover. There were some encouraging signs this morning, though. Her red blood cells are increasing and her platelets are not dropping as rapidly as they were right after her transfusions. Hopefully, this indicates a trend that her bone marrow might be recovering. We still don't know when Hannah will be able to come home. Tuesday, May 13th: Libby writes: Hannah's oncologist and the hospital pathologist reviewed more samples of her last bone marrow and now feel that there were more early red cells as well as some early granulocytes; this was very encouraging as it looks like the bone marrow is recovering even though her cell counts are still low. Hannah actually ate and drank a little yesterday. She is having trouble with dehydrating diarrhea which looks like it is from chemotherapy toxicity. She is getting physical therapy since she has gone from a child who could climb and jump to one who can barely sit, this deterioration occurred in just about one month. This was one problem I certainly didn't anticipate along with everything else. We still don't know when Hannah can come home. It will mostly depend on her white count coming up so she has some protection from infection, and on her diarrhea slowing down. Please continue to pray for her. Wednesday 9:45 PM, May 14th: Libby writes: Hannah is still at Cottage Hospital. She is now in room 63 on the pediatrics floor. Her grandma, Sonia, is with her until tomorrow night. More ups and downs; today Hannah's white count came up over one-thousand, that was the good news. The down side was a drop in her hemoglobin to 6.8 and stools with old blood. Old blood was irrigated out of her stomach and as of this evening we're watching and hoping whatever bled will not do so again. She also received blood and platelet transfusions today. For Hannah's part, she's not allowed anything by mouth, meanwhile she's saying "eat." I think surviving leukemia could better be called surviving chemotherapy. Please continue to pray for her. Thursday, May 15th 6:30 PM: Libby writes: Better news today; Hannah's platelets are over 100,000; she's allowed to eat today and the doctor thinks if the current trend holds Hannah may be able to come home the early part of next week; then it will be a short respite and off to round 2 of chemotherapy. She is also off one of her antibiotics and people don't need to wear a mask in the room any longer. Friday, May 16th 7:30 PM: Libby is now back in Santa Barbara with Hannah. She tells me that aside from a few bouts with high blood pressure, today has been Hannah's best day in a long time. No more diarrhea, no more oral thrush, she's eating & drinking, her white cell count is up to 3,100 and no sign of fresh internal bleeding. Sunday, May 18th: 8:45 am: Hannah's in Intensive Care -Bill writes: Last night around 10 PM, we received a call from Dr. Felicity Hodder, Hannah's Pediatric Oncologist at Cottage Hospital. Libby had asked her to call me while she stayed with Hannah in the ICU. Sometime last evening, Libby had heard what sounded like Hannah having a "gurgling" diarrhea episode. When opening the diaper, there was fresh blood pouring out. Immediately, Hannah was given blood and rushed to the ICU where they monitored her vital signs. The doctor said that she had lost 300 cc's of blood (that would be 1/4th to 1/3rd of Hannah's total blood volume). Had Libby not caught this when she did, Hannah would certainly have bled to death. Using a special scope in the ICU, they found 4 places in her lower colon where the bleeding could have taken place but were by then apparently clotted. These ulcers were the direct result of her aggressive chemo-therapy to knock out the leukemia. 10 am., Sunday, Libby just called. Hannah is still in ICU but had a restful night. Libby was able to get some sleep too. This whole episode will set back Hannah's release date from the hospital. They are going to want to watch her very carefully after this crisis. Wednesday, May 21st, 7:00 am. Libby writes: As of this morning, things still seem to be on the up and down course. Yesterday, the doctor felt that Hannah might be able to come home today. However, for the last two days she has had stools with old blood indicating that she was still oozing from some site. Last night she had a large one of these bloody stools and her hgb had dropped so that she needed blood. On the positive side her platelets are staying up by themselves and her white count is in the normal range. She was actually playing with blocks yesterday and was overall more active. We'll see this morning if that bleeding continued overnight. Wednesday, May 21st, 9:35 PM: Later this morning we received a call from Sonia who was staying with Hannah at the hospital. She said that Hannah had extensive fresh bleeding this morning from the ulcers in her lower colon. They immediately began new transfusions and took her into surgery where Dr. Juan Gregory scoped her upper and lower GI tracts to see if he could locate and cauterize these areas. He wasn't successful in finding the location. Libby and I went down to Cottage Hospital this afternoon. I brought Sonia back up with me to Nipomo. Now we just have to wait. If she bleeds again, he'll try and scope her quickly to find the source. We pray she won't have to have a section of her intestine removed. She is so weak that we would be concerned if she could even stand this. May 23rd, 4:15 PM: Hannah is improving! Very good news from Libby from Santa Barbara. No bleeding for the last 48 hours! Her blood marrow test today came back negative for leukemia cells and her other cell production looked good. When the doctors took her in to surgery under general anesthesia for another endoscope procedure early this morning, they were amazed to find her colon ulcers had healed 50%. A surgeon was standing by during this procedure just in case to see if Hannah might need part of her colon removed if the situation truly demanded it. The ulcers before had eaten into and through the first and second membrane of the intestinal wall. Had it gotten deeper, the intestinal wall would have perforated and her gut bacteria would have spilled into her abdomen causing unimaginable infection or worse. When the doctors looked at it this morning, not only had they not worsened but it looked to them to be someone else's lower intestine than the one they looked at just 48 hours earlier. Thank God for answered prayer! All things are possible with God. It looks like the surgery is out of the question for now. Dr. Hodder told Libby that now, if all goes well, Hannah could come home in 2 days. Saturday, May 24th - 2:30 PM: Libby's home. Sonia is down there now with Hannah who has been stable now for 72 hours. No new bleeding and her blood chemistry is real good. Dr. Hodder said today that it looks like Hannah can come home this coming Monday. With Eric's wedding coming up next weekend, this would be wonderful to have her here with her mom and grandma too. Sunday, May 25th - 8:30 PM: Hannah is still stable and improving. The doctor now says that she could come home this Tuesday. By then, she will have completed her course of IV antibiotics that Dr. Hodder wants to see her finish. Sonia reports that Hannah pushed some blocks onto the floor today and laughed just like she used to before she was sick. A deep hearty laugh like she was being tickled. Yes! Tuesday, May 27th - 6:15 PM. Hannah's Home!! Sonia and John brought Hannah home today from Cottage Hospital. She is doing really well considering what she has been through. What a trooper! Friday, May 30th, 2:30 PM. Every day that goes by now, Hannah looks better and better. Her sense of humor is coming back as well as her signature gleam in her eyes. She loves to play "scary monster". This is where she furrows her brow and makes a growling sound. You're supposed to feign fear when she does this and she just loves it when you cringe in horror at this terrible "monster" in your midst. Next Tuesday, we go to Santa Barbara for a routine check with her oncology doctor, Felicity Hodder. Saturday, June 7, 1997: Hannah continues to improve. Aside from a little nausea, her chemotherapy on Tuesday was not a setback for her. She still needs to build up her muscle strength as her long hospital stay and the effects of the chemo has left her very weak. She essentially needs to learn to walk again. Her alertness and sense of humor grow every day. Thursday, June 12, 1997, 9:00 PM: Hannah has developed a fever today of 102 degrees. We have contacted her doctor in Santa Barbara who just said to watch her carefully as her defenses should be able to handle this now. Thursday, June 19, 1997, 8:00 PM: Hannah seems to be doing better as far as the fevers go. She is gaining weight and even crawling around if she's motivated enough (if she thinks you're going bye-bye). We've also been holding her arms up and encouraging her to walk. As her legs get stronger, this may be a real possibility fairly shortly (we hope). A big concern for us now is her nausea. She routinely throws up twice a day now. She's taking a anti-nausea drug called "Zofran" every day. It doesn't seem to really help that much. We still must continue the nightly IV feeding with the TPN (Total Parental Nutrition) solution. We'll be so happy to see Hannah un-connected from all this stuff! The chemo-therapy is really brutal on her. Thursday, June 26, 1997 8:30 am: Libby writes: Hannah once again has proved to be unbelievably sensitive to even less intense chemotherapy. Last week she developed diarrhea which was the precursor to the bleeding colon ulcers she experienced before. We have now temporarily stopped the oral chemotherapy she was getting daily, and her stools seem to be improving a little. Last evening was the first evening in a while that she didn't vomit; she actually ate a little taco meat; it's amazing what happens when you stop putting poisons into the body. On the very positive side, Hannah's weight-bearing is increasing; she is standing more and even cruised around furniture a little yesterday. Her spirits are also improving. Thanks again for all your prayers. Hannah is continuing to improve. She stayed off chemotherapy for about two weeks, during which time her diarrhea resolved and her appetite returned. She was eating so well that we were able to stop the IV feeding she was getting at night. She has now been back on oral chemo for two weeks and is still holding her own. She has also started to truly walk. Her gait is still a little stilted, but it almost feels like a miracle to see her walk. It may be that Hannah's next great test will be when she enters her next phase of intense chemo in the fall. Please keep us in your prayers. Our entries have been a little sparse as of late, as during this last month our youngest son Aaron who is not quite six was diagnosed with Type I diabetes. Between Hannah and this new development, I think our energy stores came close to depletion. If anyone reading this page has good info on Type I diabetes in children we would love to hear from you. Friday, August 15, 1997, 7:30 PM: Libby writes: Hannah is past the halfway mark of her less intense phase of chemo. She has continued to do fairly well, although her appetite is starting to wain and overall she doesn't seem to feel as well. She is scheduled for what is called re-induction and re-intensification starting September 12 if her blood counts remain high enough. I am not looking forward to this. Please remember us in your prayers. Hannah is continuing to show delightful developments in her speech and activity. It is remarkable that she is progressing in spite of everything. Aaron is doing well in adapting to diabetes. Since the first few days he has been doing his own blood sugar checks and giving his own insulin injections. He wanted to do this. He is even starting to draw up some of his insulin. It is still a hard concept for him to grasp that diabetes is not a short term illness.
Thursday, April 16th, 1998 at 35,000 feet (going to Maui to visit Eric & Dao!).....Libby writes: It's been such a long time that we updated this page, I can't even remember what we said in the last entry. Starting last September Hannah went through re-induction and delayed intensification. The 10 days or so before she started this were so wonderful as she was totally off chemo. Even being off for such a short time makes a huge difference. True to form she proved to be incredibly sensitive to the chemo and became neutropenic within two weeks of starting treatment. Once again, she was unable to complete the scheduled chemo due to severe side effects including stage IV liver toxicity. During this time she ended up in the hospital a couple of times, once with C. difficile colitis and the other with a fever, neutropenia and central line infection. In January, she actually had her central line removed as the site wouldn't heal. Actually, it is much better now without the central line and the nightly dressing changes were more like torture sessions. Currently, Hannah remains in remission and is on maintenance chemo. She still feels very fatigued and irritable in the week or so following the vincristine pulses; she also gets decadron during this time which is like a drug from hell. We are very thankful that she is in remission, but it is hard to watch her get knocked down again and again; it seems like the treatment will never end. At this point she has about another 12-15 months to go. Amazingly, through all of this, her mind has continued to develop; it is a pleasure to watch this. Her gross motor skills are just now coming back to what they were prior to chemo; what a blow to her body. We continue to believe that her healing is truly by the hand of God , as he intimately knows all the secrets of her body. Once again, we appreciate all your prayers for Hannah and will pray for you. We'll try not to let this lapse so long. I think we were so wiped out we lacked even the mental energy to do it. P.S. Aaron continues to do well with his diabetes; he prays for both himself and Hannah regularly. As we write this we are enroute to visit our oldest son Eric and his wife Dao in Hawaii; a first ever trip for us!
June 7, 1999 Hannah is doing very well now. Her last chemo will be in mid July. She shows no sign of her leukemia and is growing bigger each day. If her story has touched or helped you, please email us at billevans@lightspeed.net.
A very special thanks to every one of our friends, neighbors and family members who have prayed for Hannah, helped the family with dinners, donated blood and offered and provided help in so many various ways. Special thanks to Bob & Shirley Firestone for their very kind and understanding way of handling Libby's work scheduling during this time. You all will never know how much we appreciate everything you've done and are doing for Hannah and our family.
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email: billevans@lightspeed.net