Below you will find copies of emails that we sent all over the world. There are so many people who love Kylie and were praying for her to win her fight, this became our way of keeping everyone informed....

Date: April 18, 1999

Subject: We lost the fight day +79

Kylie was taken from us at 2:46 this morning. Thank you for your love and prayers. Henry and Gina

Date: April 17, 1999

Subject: Not Good - Day +69 - +78

Kylie continues to get worse. Her liver and kidneys have begun to present problems, her right chest cavity filled with fluid, (another chest tube was put in), her left lung is suffering from either an infection or hemorrhage as fluid is building up inside and the bloody stools have returned after slowing down earlier in the week. I could go on in great detail and explain what is happening and the causes, but I'm really not up to it today. The bottom line is Kylie is very sick and must show signs of improvement over the next 48 to 72 hours. Please say prayers for her this weekend. Henry and Gina

Subject: Another Challenge- Day +69 - +72

In addition to everything else that is wrong with Kylie, we now have to deal with our worst fear, and biggest challenge for BMT kids, an internal infection. A stool culture from March 25th has grown into a bacterial virus called Adeno. Adeno to a healthy person is no major event. For BMT kids and immune suppressed kids like Kylie, Adeno can be deadly. Kylies immune system is extremely weak right now due to the high doses of steroids, given for the GVH, her recovering bone marrow, and overall weakened condition. There is nothing the doctors can do to treat the virus. We have to let the virus run its coarse and hope and pray Kylie is able to fend it off on her own. The odds aren't good, but other kids have gotten through it. Kylie needs to produce three consecutive weeks of negative cultures before the virus can be declared gone. Please say lots of prayers for Kylie over the next couple for weeks and ask that this virus be beaten and cleared from Kylies body. Thank you all for your continued love and support. Take care, Henry and Gina

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Date: April 07, 1999

Subject: Still Fighting Day +57 - +68

Last week Gina and I had a conference with all of Kylie's doctors, including the neurologists at Fairview. The neurology team now suspects that Kylie has suffered "gray matter volume loss" of the brain. The extent of her injury is unknown. How much Kylie recovers will be determined over the next two years. Gina and I are trying to make arrangements with another neurologist for a second opinion. Their theory is Kylie suffered the damage way back on February 16th, the day of her seizure. They believe her diastolic blood pressure was over 100 for too long of a period. When the diastolic pressure is over 100, the arteries to the brain clamp down, restrict blood flow, and cause the damage. The two MRI's taken and compared to each other confirm she has suffered volume loss. Unfortunately Kylie is suffering through another bout of GVH of the gut this week. On Saturday, Kylie lost over 500 cc of blood through her stools. The doctors struggled much of the weekend to keep up with her platelet and red cell needs. We've got myself, Nanny, Lauren, Poppy and Michele all donating platelets and trying to give Kylie good transfusions. The finally began to treat her GVH with high doses of steroids on Saturday and the bleeding has slowed. She'll remain on high doses of steroids for five days. One of the side effects of steroids is high blood pressure. Kylie is now on a continuos drip medication to treat her high blood pressure and is back under ICU supervision. Finally, earlier today for a yet to be determined reason, Kylie was unable to maintain her oxygen levels on her own. She is again in need of support to keep her oxygen saturation level above 95%. If she can't keep up any further, she'll have to put back on the respirator. The test results from her bone marrow biopsy were again inconclusive. Her leukemia is not roaring back like they suspected, yet she does have some abnormal "blast" cells, 3%. The success of her transplant will not be determined until day +100. Through all of this Kylie is still fighting, and continues to amaze the doctors. She has been through so much already, and each time she comes out of it, proving to anyone who cares, that she wants to live. We hope and pray each day that a higher power will recognize her desire to live, end this nightmare and return Kylie to us. Please continue to say prayers and feed her spirit with energy and love. Kylie will win this fight! Henry and Gina

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Date: March 26, 1999

Subject: Much of the Same: Day + 46 - + 56

I am sorry for the delay in getting out this latest update. The past ten days have been an emotional and trying week for us all. Kylie's neurological condition is slowing getting better, progressed measured in the smallest of steps. She still isn't able to speak, but she is getting stronger which allows her to communicate more with her head, and eyes. The doctors tell us we are beyond the point where Kylie will wake one morning and "snap out of her funk". It will be months before Kylie is mentally healthy again. The good news is she has no neurological damage and the doctors remain optimistic that she will get better and return to normal. Please continue saying prayers for her neurological condition to improve. Earlier in the week we got a bit of a scare when Kylie's white counts jumped from nine thousand to seventeen thousand. The doctors immediately assumed it was her leukemia roaring back and shared their thoughts with us before looking at her history. To make a long story short, they performed a bone marrow biopsy on Tuesday and her marrow is fine. We will get the DNA typing results from her marrow either later today or on Monday which will tell us the percentage of old cells Vs new cells. Please continue saying prayers for her new cells to beat out the old cells. On Tuesday Kylie had a set back in her lungs and suffered what they believe to be another minor pulmonary hemorrhage. Her lungs appear to be clearing from the daily x-ray results. Her oxygen saturation levels remain high and she hasn't needed any help breathing. Please say a prayer for her lungs to clear. On top of her lungs Kylie started producing bloody stools again this week. Test results from the rectum and lower intestine indicate its not graph Vs host disease (GVH) of the gut like the last time. It still could be GVH of the upper intestine but the only way they can test for this is by taking a biopsy of her upper intestine. This procedure would require Kylie to be put back on the respirator which we'd like to avoid if we can. The doctors have been trying to wait the bleeding out and see if it stops on its own. Unfortunately the bloody stools continue and it looks like they will take the biopsy of her upper intestine this weekend. Gina and I are convinced its GVH and are pushing the doctors to begin treating her sooner rather than later. The last thing we want if for the GVH to get out of hand like the last round! Please say a prayer for her gut to improve. Gina and I remain optimistic and hopeful that these set backs are just another bend in the road on our journey to getting Kylie well again. We thank you all for your continued support, prayer, and love. Your energy is feeding her spirit. Keep it coming. We will win this fight!

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Date: March 15, 1999

Subject: Slowly but Surely Day +42 - +45

Thank you to everyone at Dance Plus for all the time energy and hard work put into yesterdays fund raiser. We can't wait to see the video. I know Kylie will get countless hours of enjoyment from it! We've read all of your responses on Kylie's web page and are absolutely touched by each of your words and kindness. A special thanks to Ms Lori, your generosity, thoughtfulness, and caring is felt by each person you touch. Gina and I, as well as our entire family, will not be able to thank you enough times and begin to repay you for allowing us to share in your gift. Poppy called in several times yesterday to provide us with live updates from the event. The word magnificent rolled off his tongue with each report. Between, the shirts, the napkins, the video, the food, the dancers and their performance, to the raffle we are all blown away by the work put forth to support Kylie. I am absolutely humbled by all the support, energy, and love being offered for Kylie. Thank you all so much!! Kylie has slowly been improving over the weekend. Her vitals remain strong and we have almost completely weaned her off the continuous drip pain medication. In her case progress is measured in inches these days. Although, she remains in a state of "coma", she is showing signs of coming out of it. She is gaining strength in hers legs and offers some resistance to the physical therapists working with her. She is finally moving her arms, both of them, though a lot of her arm movement this weekend was involuntary. She squeezed the doctors hand for the first time yesterday. On Saturday she took her first sip of water, sucking a few drops from a straw for Gina and was chewing ice chips by Saturday night. She is beginning to move her eyebrows, lips, and jaw for the first time in weeks. She answers some questions with a nod, though she still is not making true eye contact with anyone or thing except the television. We had a scare yesterday morning as her temperature dropped from 99 to 94 degrees. We wrapped her up in blankets and were able to get her temperature back up to 98 degrees over the next four hours. The doctors report that its common for patients, who have lost control of their brain, to temporarily lose control over body temperature and blood pressure as they regain brain strength. During her temperature drop she sunk back into her coma and provided us with a bit of anxiety. By Sunday evening however, it appeared she had regained the abilities she had worked so hard on recapturing all week. Please say a pray for her continued mental improvement. Through it all the doctors have no explanation as to why or how this happened. They continue to speculate its related to one of her medications, and a result of her metabolizing drugs differently than they would have expected. She is going in for another MRI today. Please say a prayer for normal results. Long term, her white counts are much the same as last week, which is better than they were two weeks ago. We still have much work to do before we can even think about judging either the success or failure of her transplant. Please continue saying prayers for her new cells to take hold and beat out the old. We hope and pray for a strong week with continued mental and physical improvement. Thank you all for you prayers and love. Your thoughts are feeding her spirit, which remains her source of energy each day. Please keep the energy coming. Much thanks from our entire family, Henry and Gina

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Date: March 11, 1999

Subject: the days go by without a word days 37-41

Dearest family and friends, This is my 2nd attempt at the update - hoping Henry will approve! Well as last reported Kylie's eyes are open - yes - however, we are still awaiting Kylie to start being responsive to us and others. Over the past few days, since she came off life support, she has been nonresponsive and in a state of coma. It is not an extreme coma where she is passed out, but a level of coma where she is generally unable to respond to anyone or anything as normal. She is able to do some things, like going on the potty when we think she might need to, and very subtle head movements to some yes or no questions, she can move her arms,legs, and mouth, just not able to fully respond to things like squeezing our fingers or other things we might ask her to do in the way of motor activity. The doctors have been unsure of why she is in this state, and have been running different tests each day to try and figure it out. It began with an EEG, a test on her brain activity, to see if she was having a stroke or seizure. Luckily, it was negative! Next was an MRI of the brain to get a more accurate picture of what might be going on - again - negative! Then, they did a spinal tap yesterday from which we have no results as of yet. They are trying to rule out any infections in the spinal fluid. As this was being done, they said her fluid looked clear, which is good, but that we had to wait for real results from the lab. So right now we just take it day by day and try to get her to do a little more each day! We can not wait to see our baby smile again, to hear her voice, to have some pizza with her , and to sing songs with her. We have been putting a lot of home videos on for her to look at, music for her listening pleasure, and reading her books. I rub holy oil and holy water on her everyday and say prayers for her to recover from all this hell she has gone through. As far as her pulmonary hemorrhaging and life threatening GVHD, she has recovered from these, thanks to the ventilator and all our prayers. They removed her chest tubes, her urinary catheter, her oxygen supplements in her nose, and an IV in her foot. So, since last week, they have removed 6 tubes from her body, with 2 remaining ( her Hickman catheter and a tube through her nose into her stomach). Once they remove the nasal tube, Kylie should feel very comfortable again! So thanks to all of your prayers, Kylie was able to come out of some life threatening moments. As for the long term picture - we still need to pray for her new cells to take over the old cells! We are so blessed to have SO MANY people helping us through this and praying for Kylie. Thank you so very, very much! With all our love, Gina

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Date: March 7, 1999

Subject: Blues are Blinking - Day +37

Great news to report. Kylie responded well to the doctors attempt to "wake" her yesterday morning. As a result, she was taken off the respirator at noon. Her vitals were great all day yesterday, through the night last night, and they remain strong this morning! I cannot begin to tell you how great it feels to have her back. She isn't responding much just yet, but like Nanny said to me yesterday its great just to see her lips, and face again. She can open her eyes ever so slightly, and shake her head to answer yes or no. She is off the sedatives, but we are told it will take three to five days for the drugs to be flushed out of her body! Overall she is doing great, though we all realize we have a long way to go. Her legs are extremely weak, her ankles are locked and she isn't able to move her left arm. Her EEG tests (brain scans) have come back normal so we are hopeful her legs, ankles, and limp arm are simply a condition of her state and not something more serious. She had a little blood in her urine last night and we are waiting for test results to determine if she has a bladder infection. Her blood counts, particularly her white cell counts, have improved during the week and we are much more optimistic this weekend than last that her bone marrow is healing and producing healthy "new" cells. Hats off to you all, and much thanks. Your prayers, continued thought and love have gotten her through an extremely tough two weeks. Please say a prayer for her to continue to heal and gain strength each day. Please say a prayer that the good news this weekend is truly a sign that she has turned the corner and is back on track. Please say a prayer that her bone marrow is healing and the "new" cells are growing and taking over the "old". It is a long slow torturous process but real progress has been made and her spirit remains strong. Thank you for continuing to feed her spirit and providing her the strength to heal. A special thanks to Gina Vitale who this week finished Kylie's web page. Gina put allot of time, thought, creative energy and obvious web design skill into the page. Thank you Gina! Please check it out and say hello to Kylie. The address is http://home.att.net/~haley.kylie/. *This is no longer active* Regards, and much thanks to you all. Henry and Gina

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Date: March 7, 1999

Subject: Kylie's Update Days +31 - +36

Hello to everyone! This is my first attempt at the update - Henry has been busy all week trying to work! Well it has been an uneventful week! Which is very good around here. Kylie is still on the respirator, but do to come off it today. She has pretty much been out of it all week. Lauren and Michele (my sisters) left on Wednesday to go home and Kylie was very receptive to them when they asked her questions. She would shake her head -yes or no- and squeeze our hands. That is exciting to us considering she had been on sedatives and pain killers! In the days before that she was also on a drug to paralyze her totally, which was very hard for us. But they had to put her on this drug to keep her from pulling the tube out of her mouth. Hopefully today she will get off the respirator and continue to recover from her hemorrhaging and all the pressure on her lungs from the intubation. Thanks to all of you and your prayers for her - she got through an extremely rough period. And hopefully that will be her last complication due to transplant. Now - the other major issue is her reoccurrence of her own cells ( the ones with the leukemia ). Right now there is still a significant amount of Kylie's 'bad' cells in her marrow. What we need is for the new cells to continue to attack the old ones and eventually kill them all. This is imperative for remission. The doctors say that sometimes it could take up to 3 months! We need to pray every day that the cord blood she received take over COMPLETELY! If Kylie's cells persist - it most likely means another transplant. This would be also very risky. They say that her leukemia is extremely "hard to kill". This means we need another miracle! We need continued prayers that it won't get that far and that her 'new' blood will take over! We are so very grateful to ALL of you who have been praying and helping us through this nightmare. It is still a long haul and we still need your prayers!! Thank you - again - so very, very much! PS - Kylie's website is: http://home.att.net/~haley.kylie/ *This is no longer active*

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Date: March 01, 1999

Subject: Your Prayers are Working - Day +29 - +30

I am short for time as I write, so this update will be short and sweet. Kylie had a great weekend. She is still on the respirator. However, they continue to bring down the rates down and are allowing her to do some of her own breathing over the respirator. Her chest X-Rays are improving, indicating her lungs are clearing themselves. She still has the chest tubes in though they are not discharging much fluid. Her vitals have been stable all weekend. She finally lost some weight (fluid) on Sunday, and she actually lost a centimeter of girth around her belly. Not much, but will take it. All these signs are good and hopefully are strong indicators that we are heading in the right direction. Haley has been down in Orlando all weekend and is having a great time with Nanny and Poppy. She'll be home on Tuesday and back to school on Wednesday. Aunt Sharon left on Saturday, Aunt Lauren and Aunt Michele arrived Saturday night. All three have provided Gina and I much needed support. Your prayers are working! Please continue to say prayers and offer support for Kylie each day and help her continue to improve! Forever grateful. Henry and Gina

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Date: February 27, 1999

Subject: One step back, two steps forward? Day +27 - +28

Unfortunately things have not improved. Kylie had what they believe to be a hemorrhage inside her lungs Thursday night. She is back on the respirator. Though this may appear to be another set back, and it is in the sense that she had another organ require help, we have to believe this was simply a small, necessary stride backward before we power forward to stronger days. Being on the respirator is a good thing for Kylie right now. She was expending so much energy trying to keep her oxygen levels up it had to be difficult for her body to focus on anything else. With the respirator, her respiratory rates are great, her heart rate is normal and her blood pressure is stable and normal. She is resting and hopefully allowing her body to regroup and begin to go after her gut and help the healing process along. She needs to help herself, and allow her body to do its work. We know she can and will! Please say a prayer for her body to gain strength and begin to heal itself. On to good news though most of it is secondary to above. Kylies white cell counts were completely wiped out last week from the seizure. During this week however, we have seen her white cells come back, with a lower percentage of neutrophils, which hopefully is an indication that this second "crop" of white cells has a higher percentage of cord cells than her own "old" cells. The fact that she has a relatively high percentage of white cells at this stage is great. These cells will allow her to fight off virus, bacteria, and fungi as well as heal whatever is currently not right and not diagnosed. Please say a prayer that these white cells are from the cord blood and not her "old" cells. Her bowel biopsy confirmed graph Vs host (GVH) of the gut. This could be a good thing, if we can keep it under control, as part of GVH is also graph Vs leukemia (GVL) where the stems cells attack the leukemia cells as well as Kylies body. Please say a prayer for GVL and nominal GVH! We finally got a boost in her platelet levels. She began receiving HLA typed platelets on Thursday, including a dose of Nanny's platelets yesterday. We saw her counts go from 10K to over 85K! She continues to have bloody stools, but these stools are old blood, not new, which is another good sign that the internal bleeding has slowed if not stoped. Please say a prayer that these new platelets will work. Though her kidney functions are not normal, they improved by 50% on Friday alone! This improvement should help her "naturally" flush some of the fluid build up in her belly. Please say a prayer for her belly to reduce in size and return to normal. I just spoke to Gina, Saturday 8:30 A.M. Gina and Sharon spent the night with Kylie last night. Kylie had a great night! There were no major events, making last night the first night this week, we haven't had something. Hopefully another sign that she is getting stronger. Gina told me they began to reduce the respirator rates last night. She is down to 40% oxygen , and 22% pressure which are good signs that the lungs are clearing, and not getting worse. Kylie will have a chest x-ray this AM which will provide conclusive results. Please say a prayer for a clear chest x ray. On a side note, we have maxed out on the number of people we can include on this directory listing. We are actually over the limit and some are not receiving all the updates as a result. More friends and family have asked to be included. Please forward these on to those we miss or those the system does not forward to. Thanks for all you support, love and prayers. Keep them coming, its your energy which is providing Kylie the strength to get through this! We'll never be able to thank you all enough! We will win this fight!! Henry and Gina

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Date: February 25, 1999

Subject: I wish it were easier - Day +25 - +26

Though Kylies vitals have stabilized over the past few days, new complications have developed. The most concerning issues have been newly developed bloody stools and the doctors inability to keep up with her blood needs as a result of these stools. She was finally able to get her platelet levels up to a respectable level, 20,000, and maintain her hemoglobin levels above 10,000 during the day today. This helped with the stools as she only had one throughout the day today. The doctors continue to suspect GVH of the gut, though the cat scan performed today was inconclusive. Tomorrow she will go in for a bowel biopsy to determine if it is GVH. She will begin receiving HLA typed platelets tomorrow in hopes that her blood needs will further decrease and the HLA typed platelets will continue to slow up the intestinal bleeding as they are more readily accepted by her body than "standard" platelets. Nanny, Sharon, and myself are four out of six HLA type matches for Kylie. Nanny donated platelets for Kylie today, Sharon is scheduled for Friday and myself on Monday. These donations along with the other HLA typed platelets available to her, will get her through next week. The swelling in her belly has not gone down over the past two days. The swelling is forcing her diaphragm up into her chest cavity and limiting the depth of breath she can take. She remains on oxygen support as a result. Through all this Kylie had a great morning today. She was up, alert, able to watch videos, drinking water, smiling, and making funny faces. Her voice is slowing coming back though it is still hard for her to speak. We need to get her past the bleeding and reduce the swelling over the next three to five days. Thank you for your support, please continue to say prayers for her. Take care. Henry and Gina.

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Date: February 22, 1999

Subject: Breathing a bit easier - Day +23 - +24

Thank you for all your support, prayer and love offered to Kylie the past several days. Each one has been received and is helping Kylie continue to fight and stay strong. Please continue to say a prayer for her each day, as faith, belief, and love is all she has right now. We have to believe she can fell and sense all of our positive energy and it is helping her remain strong and focused. Thankfully, Kylie has enjoyed two relatively calm days. Her blood pressure has remained stable, her temperature has come down, though still high 99-101, her respiration rate has come down, and her heart rate has come down. All good things. The doctors suspect all of these vitals continue to be above normal as a result of the fluid build up in her chest cavity and belly which is a side effect of some underlying, yet to be determined infection. As I mentioned in my last posting, on Saturday they inserted a chest catheter into her right chest cavity to release some of the fluid build up. The catheter did a great Saturday night and Sunday draining the fluid, allowing her to breath a bit easier with less energy. It still in and continues to drain fluid. On Sunday with Kylie resting a bit easier, they ran some more tests, and allowed her to build back some strength and rest her kidneys and liver from all the drugs they have been giving her. By this morning, her belly remained unchanged, and perhaps was even building up more fluid. They began treating her with volume reducing drugs and lassix trying to help her discharge the fluid "naturally" through her kidneys. Her belly finally began to soften this afternoon as the fluid was being removed! From Sunday afternoon to Monday evening Kylie "lost" 2 pounds of fluid through her chest catheter and kidneys. Unfortunately fluid began to build in her left chest cavity today and forced the doctors to insert a second chest catheter into her left cavity this evening. She is finally resting tonight and her vitals have all come down a bit more with the additional and continued release of fluids. The doctors tell us we are not out of the woods yet, but with her vitals stabilizing and the fluid being removed, perhaps there is a ray of light at the end of the tunnel for us to focus on?? Thank you again for all your thoughts and prayers. Henry and Gina

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Date: February 20, 1999

Subject: What a week - Day +17 - +22

To say it has been a long week would be a flat out lie. This has been, I hope, the worst week of health Kylie will ever face. First off, it wasn't until Thursday afternoon that we received the "final" results of Kylies bone marrow biopsy and DNA typing. I'm sure she felt our stress as we waited each day for results that were promised the day before. When we finally did get them, the results weren't good. Of the "new" marrow growing in Kylie only 12% of the cells are from the transplant the remaining 88% are her "old" cells growing back. We had hoped for a much higher percentage of new cells vs old cells. As a result the doctors have stopped all the steroid medications and hope to evoke graph vs host disease, GVH, in Kylie and ultimately graph vs leukemia. They believe there is a chance that the "new" cells will attack the "old" cells as they fight for the same "home". They have had success in envoking GVH and putting the cancer into remission. If the GVH fails, its back to square one and we start the whole BMT process over again if Kylie is healthy enough to do so. Right now, we hope to get that far. On Tuesday Kylie suffered a seizure. It was by far the most horrifying and awful experience we have been through as a family. We spent all day Wednesday in and out of tests, EKG, MRI, Cat Scan, Spinal Tap and a Chest X-Ray. We waited the rest of the week for these test results to come in and offer explanation. So far all of the results, blood cultures and x ray's have come up negative. They have no idea what caused the seizure. Kylie needed life support to get her through Tuesday night and Wednesday. On Thursday we were able to get her off the respirator and she did pretty well Thursday and Friday breathing on her own. As a result of the seizure, and the life support tube jammed down her throat, Kylie is unable to speak right now. All of her neurological tests have come back positive and they fully expect her to regain her speech once her throat heals up. The only "damage" the seizure appears to have done is a slight paralysis of her right ankle and mild paralysis of her left ankle. They have recommended we begin physical therapy as soon as Kylie is strong enough. Right now she can't even cough, stand or raise her arms for an extended period let alone attempt to walk. Throughout the entire week, Kylie has been running a fever of 101 - 103 degrees. They have taken blood cultures every day and have yet to determine what type of virus, fungus, or bacteria has caused this infection / fever. We continue to wait on these results as well. Finally, last night Kylie had an absolutely awful time keeping her blood pressure up. Her blood pressure continued to drop throughout the night and the doctors could not get enough platelets, red cells and plasma to fill her veins and bring the pressure up. For yet another unknown reason, she was experiencing this major volume loss in her veins. The loss was leaving her veins and building up in her gut and lungs, swelling her belly and chest up, making both hard as rocks to the touch. She had major difficulty breathing and wasn't strong enough to cough up the fluid. Her heart was racing between 170 - 190 BPM most of the night. Finally at 7:00 AM this morning her blood pressure stabilized and began to hold itself throughout the day. The fluid remained in her gut and chest, and this evening she had a chest catheter inserted through her rib cage and a stomach drain inserted down through her nose. She's doing much better tonight (I hope) and we hope with her fever breaking, and vitals stabilizing this is the end to the nightmare of a week Kylie went through. Thank you all for your toughts and prayers. Kylie needed each and everyone of them this past week to pull her through!! Take care, Henry and Gina

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Date: February 14, 1999

Subject: Day +15 - +16

I'm writing tonight with the feeling that I have little to update everyone on. We continue to wait for the DNA test results and the bone marrow biopsy tomorrow, 1 PM. Together, these tests will tell us if the "new" white cells growing in her body are healthy or remaining / multiplying leukemia cells. We're scared to even find out the results. The knot in my stomach has remained and I can think of little else. Kylie's white cells doubled again each of the past two days, coming in at 9700 this morning. Her neophyls - (sp) were above 500 for the second day in a row. Neophyls are the white blood cells that protect the body against virus, bacteria, and fungus. If these cell counts are above 500 for three consecutive days Kylie will be allowed to leave her room, though I'm not sure if that means a whole lot to her at this point. Her spirits remain strong and she enjoys the one on one "play" time with Gina, myself, the nurses or whomever is visiting. Last night my Mom was alone with Kylie for an hour or so and they enjoyed each others company taking Polaroid pictures of each other, and reading books. It was another beautiful warm day here in mpls, and Kylie spent much of the afternoon in my lap looking out the window of her room. She needed two more platelet transfusions yesterday, keeping her counts above 20,000. Gina arrived at the hospital late this afternoon with bags full of cards, gifts and balloons for Kylie, so I am sure they are having a great time tonight going through everything. The doctors were in this afternoon and wouldn't tip their hand. They continue to tell us she is doing great and we need to wait for the results before anything further. I asked them to give me their gut instinct and /or professional opinion based on previous jcml patients and neither of them budged. They again told us to sit tight and wait for the lab results. Until then we'll wait. I hope to report awesome news with my next update. Thanks to all for your support. Henry and Gina.

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Date: February 12, 1999

Subject: Let It Grow - Day +12 - +14

Kylies white cell counts are doing awesome. They have essentially doubled each of the last few days and were at 2100 this AM. At day +14, the doctors are pleased with her engraphment. Her GVHD of the skin is under control and she is responding well to the steroid creams and IV's. The pressing issue of the past few days has been her weight. She has gained six pounds since entering the hospital. For a kid weighing thirty pounds, gaining six pounds, or 20% of original body weight, in less than a month is of concern! We started counting calories yesterday, minimizing her IV's and hope to stabilize her weight over the next couple of days. The doctors aren't overly concerned unless it continues to go up. She continues to need platelet and red cells transfusions almost daily. She has had 18 platelet transfusions and 8 red cell transfusions since entering the hospital. The doctors took a large blood sample from Kylie today. With this sample, they will be "spinning" off her "new" white cells and performing DNA typing tests on these white cells. They will be looking to see if her "new" white bloods cells have the same DNA markers as her original white cells or the markers of her transplanted white cells. We are hoping the DNA tests show the transplant markers and not her originals. Also on Monday, 2/15, Kylie will have a bone marrow biopsy performed. They will be taking a close look at the white cells in her bone marrow and will be able to determine if they are healthy new cells or remaining / growing old leukemia cells. Both tests will take several days to complete. We should begin receiving test results on Tuesday 2/16 afternoon or Wednesday morning. Both these tests are huge. Please say an extra prayer for Kylie this weekend and hope for good news with each test! My stomach is in a knot tonight. We are trying to be optimistic, but the fear of the unknown is wearing on us. The waiting is the hardest part - TP. Kylie remains to be our inspiration. Her spirits are great and she is enjoying each moment for what its worth. I hope and pray I'll have good news to report when her results come in early next week. Thanks to all for your support! Henry and Gina

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Date: February 10, 1999

Subject: I wanna be like Mike - Day +8 - +11

Thank you for all of your personal generosity and work with each donation and fund raiser. We are absolutely overwhelmed with the outpouring of support for Kylie. Words cannot begin to express our appreciation. The ultimate thank you will be in all of you being able to share in the life of a healthy Kylie! Gina and I will be sharing with each of you, as you have shared with us, the success of her fund that have been generated thus far. Many of you have responded to our update and I apologize for not being able to answer most. Many of you have asked about Haley, myself and Gina, as well as requested pictures. Haley is doing great with much help from Gina's Mom and Dad ( Nanny & Poppy ), my sister ( Sharon ), my sister in law Michele ( Aunt Michele ), and my Mom ( Ginny ) all whom have been here taking care of Haley while Gina and I are with Kylie. Gina's sister ( Aunt Lauren ) will be out next week and Haley will be going down to Florida with Nanny and Poppy the last week in February. For those interested, I have attached a picture of Kylie, taken this past December, somewhere between x-mas and new years. The past couple of days have been active ones. Saturday morning myself, Haley, Nanny and Poppy walked three miles around the mall of America in a National Leukemia Society sponsored Leukemia Walk. Cargill generously donated $50 for every employee who participated in the walk! We had a great turnout with over 60 people from Cargill "walking" and ended up with the first place trophy recognizing the group who generated the most amount of money for the National Leukemia Society. Thanks to all who were involved! When we returned to the hospital Saturday afternoon Kylie's hair was all but gone. She held her ground however and refused to let us shave off the remainder. Haley and I went to a barber shop and I got crew cut. Haley laughed the entire time while I got buzzed. We returned to the hospital and the "new look" provided Kylie the inspiration to allow Nanny to shave off the rest of her hair. Kylie and I are now "twins". We are able to rub our bald heads together and laugh at each others new looks. I imagine for the most part Kylie is laughing at me and not with me! The bad news over the weekend was Kylie continued to run an extremely high temperature, spiking at 103.9 on several occasions. The doctors continued to run blood tests, cat scans, chest x-rays, and ear and throat cultures. Each of the test results came back negative. Finally Sunday night her fever broke. With each test result turning up negative and the appearance of a rash on her skin Monday AM, the doctors concluded she was experiencing Graph Vs Host Disease, (GVHD). GVHD is the result of her new stems cells ( transplant ) becoming active, recognizing they are in a new body ( host ), and attacking that body as they adapt and become comfortable with the new environment in which they are in. GVHD in moderation can be a good thing for jcml leukemia. Studies have shown that kids with jcml leukemia who experience GVHD have a lesser rate of recurrence than those kids who do not experience GVHD. The bad news is that if GVHD progress's too much it can be fatal. The doctor's believe that her case is "mild" and they will be able to keep it under control with two steroid creams which we have to rub all over her body three times a day. The good news is the stem cells are active and are trying to produce white blood cells. Her white counts rose from essentially zero on Friday to 250 today. Whether or not they will successfully engraft will be seen in the next ten days or so. Kylie's spirits were awesome today, +11. She was up and about her room most of the day, mainly looking out the window for the first time "people watching". It was a warm day here in mpls. It was the kind of mid winter day that feels like spring, yet you know its not, but still forces you outside to enjoy in its glory and add a bounce to your step. Though stuck in her room I believe Kylie sensed it was one of those days and wanted to be part of it by looking out the window. Thanks again for all your support. Henry, Gina, Haley and Kylie.

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Date: February 06, 1999

Subject: Day +7

First off I'd like to say thank you to each and everyone of you for all the support. Through this e-mail we are speaking to friends and family whom we have not spoken to directly in far to long of time! Please keep bringing those interested in hearing about Kylie to us. It is comforting to know there are friends like you who are pulling for Kylie. The past few days have been somewhat draining. Kylie has run up a fever (102) the past couple of nights and hasn't been able to shake whatever infection is running through her body. She goes through periods where she wants nothing more than to watch a video or sleep to periods where she is her normal spirited self. The doctors tell us she is doing great however, and all the things she has been experiencing are "normal" with her underlying disease. Prior to her transplant the doctors told us to expect the worse during the first seven days post transplant. We are now at day seven and relatively speaking her "complications" have not been too severe. We still have problems with platelets and red cells. Her body continues to "chew" them up. She has needed daily transfusions of both to keep her levels above dangerous levels. Her hair continues to fall out making a mess of the entire room. We asked her today if we could shave her head and avoid some of the mess. Her response was a resounding NO. So we'll all endure and let her hair fall out at its pace and not ours. It looks like her ear infections have cleared and the doctors have agreed to stop her ear medicine. Kylie is excited, she has grown tired of us given her drops four times a day in both ears. Her mouth remains free of any major sores and when her fever isn't up she has maintained her appetite. Seven days down fourteen to go before we can even hope for some encouraging news! Thanks again for the support. Henry and Gina

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