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Updated on January 16th, 2007: Hello, everyone! We hope everyone had a Merry Christmas and Happy New Year! We are happy to report things are going very well. Since we haven't updated since August, this will be long… In November, Melanie was taken completely off the Prednisone and Pentostatin. The doctors have also begun to wean Melanie off the Cyclosporine. We are hopeful her GVHD will not flare up and the doctors will continue to wean her off all of the drugs eventually:) Quite a bit has happened since our last update. In September, we ventured down to North Carolina for a much overdue visit to Robbyn and Joe and the kids. Melanie really enjoyed playing with Joey, Andrew and baby Allison. We learned a key parenting lesson on this trip. DO NOT under any circumstances put key stuffed members of the family in checked baggage. We weren't sure we'd ever see "baby" again after Pam's bag was lost. We felt oh so guilty for shoving her in the suitcase last minute after Melanie screamed desperately for her at bedtime. Luckily, she turned up the next night and all was again right with the world. In October, we traveled back to Trexlertown for great grandpa Bastian's 80th birthday party. Melanie had a great time running around the banquet hall trying to steal the party and even tried to help great grandpa sing the Happy Birthday song. While we flew to North Carolina and Pennsylvania, we decided we needed a real road trip adventure, so we drove to Breckenridge, Colorado for New Year's. Melanie did not quite grasp the magnitude of the journey. When we mentioned the trip to her, she asked "Grandma's house?" We had to explain that we were going a little farther than Lombard. Melanie loved Colorado. While we skied and snowboarded, we put Melanie in daycare. I am not sure if she has some sort of toy radar, but she lit up right when we entered the building. Not sure what tipped her off, but as soon as we set her down, she looked up at us and said "toys in there" as she toddled off at top speed down the hallway. After a full day of skiing and snowboarding, Pam and I would make our way back to the daycare to pick Melanie up. We would see other kids come running out of the daycare with smiling faces as they excitedly ran into mommy or daddy's arms, sometimes even exclaiming "MOMMY" or "DADDY". When it came to Melanie, there was usually a delay while we waited for her teacher to bring her out. She was not leaving daycare without a fight. I guess I cannot really blame her. At daycare, she got to go sledding, ride the gondola and play with an endless supply of toys. All we ever do is tell her things like: "eat your chicken", "no candy for breakfast" and "don't color on the wall!" :) All in all, Melanie had a blast in Colorado and threw quite the little temper tantrum when she realized it was time to leave the "Colorado house," as she called it. We must thank the whole Koepke clan for their overwhelming hospitality! In addition to the large events, there were quite a few smaller moments that just cracked us up. One day, Melanie discovered that soup and M's (a.k.a. M&M's, her very favorite treat) don't mix. An M dropped in her bowl of soup, upon which Melanie, completely distraught, whined "new one, poop on it…" I guess this shows how juvenile I am, but it was all I could do to keep a straight face. I felt a little bad as Melanie continued to explain what was, clearly, a very serious problem. Melanie has also become quite the caring little toddler. While she can now say "diaper" pretty well, there was a time she called them "boppers". It was pretty funny when she'd come over and request "bear bopper." You would give her one and she would run away, but invariably she would be back for another. Upon questioning of why she needed another "bopper", she would simply state "baby bopper." We also think she may have a future in medicine. She has quite a few toy "aringes" (syringes) and sometimes spends afternoons jamming her "aringes" into various toy bottles and then thrusts them into baby and bear's mouths. Her medical skills do not stop there. She regularly gives Snoopy IV's, puts tourniquets on bear and uses her stethoscope on Elmo. Recently, she has started performing examinations with the new flashlight she got for Christmas. She spent quite a bit of time during the drive back from Colorado shining the light into Bear's ears and eyes looking for anything problematic. We can only smile as we see her trying to emulate what gets done to her on a regular basis. I know I am going to jinx us by saying this, but it is amazing how well she handles it all. She takes her IV's (or pokes) during her trips to the hospital like a champ and takes her medicine without question everyday. And for our last anecdote, we come to Melanie's budding use of electronics. Melanie's pretty good with the CD player & DVD player, but I would love to hear Melanie explain what she thinks the VCR does. We have come to discover that Melanie has been putting DVD's, loose change and miniature pigs in the VCR. I guess you can chalk trying to put a DVD into the VCR player as an honest mistake, but I am not really sure what she was trying to accomplish with the pigs. Incidentally, we only discovered the loose change when we were searching for the pigs. I ended up needing one of Melanie's doctor toy mirrors to free the pigs:) Well, that is about all the news on Melanie. We just keep counting the days forward and putting the transplant farther behind us. As the days pass and life becomes more and more normal, it becomes harder and harder to believe she has had 2 bone marrow transplants. These days we have started to think of ways to try to help others fighting the same fight. So, we'd like to announce the 1st (hopefully annual) Histio Heroes 5K race to be held in Batavia on September 16th, 2007. We are partnering with a couple other histio families (the Thompsons & the Ascencios) to put on the race. Please mark your calendars! We want all of you to be there & please tell all of your family and friends. For those of you who couldn't imagine running or walking 3.1 miles, we will need many race day volunteers, so please let me know if you would like to help out. More details to follow! We hope this update finds everyone well, and once again would like to thank everyone thinking of Melanie:) With love, Joe, Pam and Melanie:) Updated on August 25th, 2006: Hello, everyone! Once again it has been a while since our last update. We will get the medical news out of the way first this time. Melanie is still being treated for GVHD, but the drugs do not seem to bother her, as she is as active as ever. A few months ago she was enrolled in an experimental study using a chemotherapy drug called Pentostatin to treat her GVHD. She will receive the Pentostatin every two weeks for 6 months to a year. In addition to the Pentostatin, they put her back on Prednisone every other day, but they have begun to taper her dosage. We are hoping to be off all of the drugs at some point, but we really cannot complain as things have been going very well. Quite a bit has happened since our last update. In June, we made our first trip up north to Superior, Wisconsin to visit Pam's family. While there, Pam finished Grandma's marathon, as Melanie and I cheered her on to the finish line. I was exhausted just watching the marathon. It was really great to get away for a while and just relax. The hospitality of the extended Anderson clan was great. I would have to say the most noteworthy development of the trip was Melanie's discovery of water. We made several trips to various lakes while on vacation. Initially, Melanie seemed a little skeptical of this water stuff, but, by the end of the trip, she seemed to seek out "wawa" wherever she could find it. One day, just as we arrived at one of the cabins, Melanie marched right into the lake from the shoreline toward the center. Being only about 2 feet tall, she struggled a bit, but she sure did try. She actually managed to get to the point where the water was up to her neck when she was completely swamped by a boat wake. The look on her face clearly showed she felt deeply betrayed by her close friend "wawa". As I carried her the 5 long feet back to the shore, she pointed accusingly out at the devious "wawa" that had drawn her in so alluringly, only to attack her so violently. Invariably, anytime Melanie has an unfortunate encounter with an inanimate object, the fault lies with the inanimate object. If she bumps into a wayward wall, which happens more than she cares to admit, Melanie points and glares accusingly at the wall as if it attacked her with particular malevolence. We'll have to work on her sense of accountability. Anyway, Melanie recovered from her water incident, forgave the "wawa" and, by far, our biggest temper tantrum of the trip was when we decided it was time to get out of that last lake. Melanie broke her mommy's heart as she repeatedly screamed "wawa, wawaaaa!!!" In July, Melanie celebrated her second birthday. We had been trying to teach her how to say "two" and she got it just in time. Melanie would proudly hold up a single index finger while exclaiming with authority that she was "two". She's now getting a little closer, as she now holds up both index fingers to declare that she is "two". I am not sure if my explanation is doing this activity justice, but it is pretty funny to see and hear. She likes it so much she has altered the lyrics to one of her favorite songs. It seems she has become enamored with the song "Take me out to the ballgame". She asks us to sing it, over, and over, and over and over again. However, when you get to the "one, two, three strikes your out..." part, she just chants "two, two, two" while sticking out her hand with her index finger held high. She also finishes with a crescendo of unintelligible, but cute, sounds and clapping as you complete the "...the old ball game!!!" line. As you may guess, we have spent quite a bit of time this summer at Wrigley. We also made a trip to Cleveland in July for the first ever national Histiocytosis Association convention. It was really great to meet other families impacted by histiocytosis and compare notes. Melanie had a great time playing with the other kids and taking the clothes "off" every doll she could find in the play area. We have quite a few naked dolls and stuffed animals roaming around our house these days. It seems Melanie was quite popular, as a child we'd never met seemed quite disturbed as she asked "you're not taking Melanie, are you?!" as I took her to change her diaper during one of the meeting breaks. In August, Melanie was the flower girl in Alicia and Bryan's wedding. We cannot thank Alicia and Bryan enough for having Melanie play a role in their special day. Even though she got a little stage fright and needed to walk down the aisle holding mommy's hand, we can say for certain Melanie had a great time. She really liked being the center of attention and thoroughly enjoyed having everyone's eyes on her. At the reception, she was truly a dancing machine. Although it did take her a while to figure out the dancing was supposed to be contained to the dance floor. Initially, her special brand of dancing would take her bopping off out of the banquet room and into the lounge area as we chased after her. Once she figured out the dance floor was for dancing, she could be seen out there dancing with anyone - friends, family, random strangers... She even tried to drag her grandma and grandpa out to dance when they came to pick her up and take her home. A good time was had by all. In addition to celebrating Alicia and Brian's wedding in August, we celebrated the one year anniversary of Melanie's bone marrow transplant on the 17th. It is hard to believe where we were a year ago. As we enjoyed ourselves at the wedding, we could not help but think how we spent the same weekend only one year earlier at Children's as Melanie received the more nasty treatments of the preparative regimen leading up to her transplant. As we look back on our first year post transplant, we are so thankful for how lucky we have been. While we (mostly Pam and Melanie) did make quite a few planned and unplanned visits to the hospital, we only spent 4 nights as inpatients this past year. We have to admit, we did not expect that hospital to be the Children’s Hospital of Philadelphia Other than all of this, Melanie’s been having a blast this summer playing in the water, at the park and in the backyard. She never turns down a chance to go outside. She’s also learning new words everyday. A couple days ago, as Pam and Melanie were driving past the hospital on the way home from a playdate with her friend “non” (a.k.a. John), Melanie spotted her second home, and said (for the first time) “oh, hoppal.” As we celebrate reaching day +365 we just wanted to say thanks to everyone that has helped get us here. There were times when we were really not sure how we were going to make it through it all. Though it has been a tough road, it has been amazing to see just how many people really care about our little family. I do not think we will ever be able to adequately thank all the family friends and random strangers for their thoughts, prayers, caring and generous acts of kindness. In addition, we cannot say enough about our doctors and nurses. Simply put, they are great and Melanie adores them. We are not sure what the future holds, but are looking forward to day +366 and beyond and hoping I can make the next update to the site before day +780. With love, Joe, Pam and Melanie Updated on May 10th, 2006: Hi! We hope everyone had a great Easter! I hope this latest update finds everyone well. Things here are going very well! I keep trying to find the time to write the typical big long write up, but for some reason I can never seem to find a free moment. But, it has been far too long between updates, so here is a quick one. On the medical front, things are going well. The doctors have taken Melanie off Prednisone and have lowered her Cyclosporine dosage. So, for those of you keeping score at home, we are now down to only Diflucan, Acyclovir, Penicillan and Cyclosporine. While we would rather not have had the flare up of the GVHD, it has been nice to continue our care with the ASCU. Melanie still loves going in there. She really adores her the doctors and nurses. The overall plan is to keep lowering the dosage of Cyclosporine and then monitor how Melanie's body reacts. Hopefully, her new immune system has become more acclimated to Melanie's body and will behave itself as they slowly lower the Cyclosporine dosage over the next few months. We are looking forward to a day when Melanie will be off all the drugs. We had a great time seeing folks on our trip back to Pennsylvania for Easter. We would like to apologize for not getting to see everyone. We had grand plans to see as many people as we could, but unfortunately we had to take a slight detour to the Children's Hospital of Philadelphia (CHOP). Melanie managed to catch some sort of virus that really knocked her down. She had a really high fever, diarrhea and puking. Let me tell you, that is a really great trifecta to hit while on vacation. Upon consultation with our doctors in Chicago, they recommended we take the trip down to CHOP to get Melanie checked out. Apparently, something was just going around, as the doctors at CHOP informed us they had seen huge numbers of kids in the past few weeks with similar symptoms to Melanie's. The final verdict was that she just had a normal virus that probably would have hospitalized her because of dehydration, regardless of her other issues. It was a little unfortunate that we ended up spending 4 days of our first big trip in the hospital, but everything is fine now and at least Melanie was healthy for Easter Sunday. Plus, we really have no complaints, as this was the first time Melanie had been hospitalized since the weekend prior to her transplant. We cannot be more thankful that the whole transplant has gone as well as it has. We just hope things continue to go well! There are updated pictures on the next page, thanks again for everyone's thoughts and prayers! With love, Joe, Pam and Melanie Updated on February 19th, 2006: After a long layoff, here is the latest Melanie update!!! It has been a while, so we hope everyone had a Merry Christmas, Happy New Year and lovely Valentine's day . First, I wanted to send a general thank you to everyone who sponsored Pam in her Step-Up for Kids trek up the Aon building! I am not sure how Pam does that stuff as I get winded going up our stairs. Things here are relatively quiet on the medical front, but there have been a few highlights in the past few months. The biggest highlight probably occurred back the week before Christmas, when they removed Melanie's central line. They were originally planning to remove her central line the week after Christmas, however things did not go exactly how we expected. Sometime during the night way back on December 16th, Melanie's central line actually broke. We awoke on a sleepy Saturday and everything seemed pretty normal. It was not until we went to change her diaper that we noticed the dried up blood that was all over the place. It took us a little while to figure out what was going on, but ended up heading off to the emergency room. While we probably would not have voluntarily spent one of the last good shopping days before Christmas in the hospital, we were more than happy to in this case so we could have Melanie's central line removed before Christmas. It is great to not have to worry about the central line. We kind of take it for granted now, but writing this makes me realize that it was really not that long ago when we still had to worry about all sorts of things. We were feeling a little down about some of the latest bumps in the road we have encountered, but if you compare our current annoyances to where we were, we really have no complaints. It seems every time we get close to the point where we think we will be off all the medications and living a completely normal life, something comes up. At one point we were down to having to deal with only 1 medication. However, now we are back up to 7 . It all started back towards the middle of January with some sort of rash. After a few phone calls into the Stem Cell unit, we were directed into the emergency room to have things checked out. The doctors did not think we had anything serious to worry about, but they did not want us coming into the Hematology/Oncology unit with anything that could possibly be contagious to the other kids. After spending a few hours in the emergency room we were told Melanie had a rash that was most likely caused by a virus. So we started a few new drugs and a few different lotions to try to sort things out. After a few days, the initial rash cleared up, but then a new rash appeared. At this point the doctors were able to make a specific diagnosis informing us that Melanie had developed chronic Graft Versus Host Disease (GVHD). Many patients who undergo bone marrow transplants from unrelated donors develop chronic GVHD. Our understanding is that sometimes it takes a while for the donated immune system to become fully acclimated to the recipient's body. So hopefully with a little more time and drugs, Melanie's new immune system will get used to her. Unfortunately this means Melanie will be on Prednisone and Cyclosporine for a while. Cyclosporine is an immunosuppressant that should calm Melanie's immune system down a little and Prednisone is a steroid that should clear up the symptoms of the GVHD. The plan is to wean Melanie off of these drugs as her immune system continues to adjust to the rest of her. With the immunosuppressant (Cyclosporine), Melanie had to start taking all the protective drugs again. She is on an anti-viral (Acyclovir), anti-fungal (Diflucan), anti-biotic (Penicillin) and anti-pneumonia drug (Bactrim). In addition, it looks like Melanie's blood pressure is up a little bit from the Cyclosporine, so she started Norvasc to help keep her blood pressure down. Now that Melanie is walking around, I think Pam and I might need to start taking that medication as well to keep our blood pressure down too . We have been told this whole process should take between 6 months and 2 years. We are hoping it is closer to 6 months than 2 years . Even with all that, things are going great. The physical therapy seems to really be helping as Melanie is now walking around all over the place and getting into everything! Next week the Early Interventions speech therapist will be evaluating Melanie again, so we will see how that goes. The physical therapist has told us that we will be able to fire her very soon . I think Pam and I may have been looking at this the wrong way. Melanie was much easier to keep track of before she could climb up the stairs, climb on the furniture and walk wherever she wanted. Maybe it is not a bad thing if she takes a while to learn how to talk back to us too . In the last week or so we have noticed Melanie is really trying to say more words. So far she has learned a few words for things like milk, more, up and things like that. However, in Melanie's world milk is "ma" and more is also "ma" so it can be a little tricky to figure out what she really means. Luckily she is very understanding and patient when mommy and daddy get confused as to whether she wants more (ma) of her broccoli or is done with her broccoli and wants more milk (ma). Rightt ... I fear we are rapidly approaching the terrible two's and we are not looking forward to the ever escalating temper tantrums that are sure to come . I have to say the cutest thing Melanie says is "up". Whenever she really wants you to pick her up or toss her up on the couch to play, she walks over and says plaintively with very crisp annunciation: "bup". It is about the cutest thing I have ever heard . I think we will sign off on that note . There are new pictures out on the website. Thanks again for everyone's thoughts and prayers! With love, Joe, Pam and Melanie Updated on December 12th, 2005: Hello, We hope this update finds everyone well. We were delighted to reach day 100 of our transplant journey the day after Thanksgiving. Pam made some cupcakes with little 100's on them to mark the occasion. Pam and I tried to give Melanie some of our celebratory cupcakes, but events did not unfold as we would have expected. Melanie was initially very interested and quickly snatched up the sumptuous piece of chocolate cupcake we offered her, popping it into her mouth with a tinge of excitement. However, the excitement quickly gave way to disgust as she swept the chunk of cupcake out of her mouth and flung it across the room with authority. She proceeded to wipe her tongue with her hand in an attempt to remove all traces of the foul tasting cupcake from her palette. Pam and I had trouble controlling our laughter as Melanie glared at us with a look that said "What in the #!*@ are you trying to feed me!" The hilarity of the scene is better understood when you see Melanie's response to foods like broccoli, green beans or corn. When any meal (breakfast, lunch or dinner) includes broccoli, Melanie goes a little crazy. Most of the time Melanie starts getting a little excited the second she sees the Jolly Green Giant box come out of the freezer. She goes absolutely nuts once we actually place the frozen pouch of vegetables in the microwave, as her anticipation builds - she cannot wait any longer!! Once we finally put the broccoli on her plate, she quickly gobbles it up by the handful. I am guessing there are not many kids who would pass up a cupcake for broccoli. This trait must be one of those ones that skips a generation. We are happy to report that things are going very well. Melanie is down to only 2 drugs (Acyclovir and Cyclosporine) and began physical therapy a few weeks ago. The physical therapist comes to the house to work with Melanie once a week. I am sure I am a little biased, but Melanie is making great strides. Before she began working with the physical therapist, Melanie was barely crawling and was not interested in pulling herself up on the furniture. I do not think she realized these things we call feet were useful as anything other than a chew toy. She is now an expert crawler, and she enjoys pulling herself up on the furniture and walking along it. In fact, to our surprise and horror today, we found her atop a box of Christmas decorations. We were in the process of decorating the tree while Melanie was innocently playing with her toys, or so we thought. The next thing we knew, we turned around to find a grinning Melanie, perched triumphantly on all fours on top of the box of decorations. It looks like we have a climber on our hands. Melanie had a bone marrow aspiration and spinal tap last week that were both clear. Now that we are past day 100, we can start taking Melanie out again. We still have to be careful and avoid crowds, but we can take Melanie to fascinating places she loves like Jewel and Target. We will also soon be switching from the ASCU (Ambulatory Stem Cell Unit) back to the Hematology/Oncology department at Children's. We are sad to be leaving the ASCU, as Melanie has really become attached to the doctors and nurses there. Whenever we go in to the hospital, you can see Melanie kicking her feet with glee as we push her stroller in the ASCU door. Once again we would like to thank everyone for their thoughts and prayers. They appear to have worked! We hope everyone has a wonderful holiday season and a happy New Year! With love, Joe, Pam and Melanie Updated on October 25th, 2005: Hello, As usual it has been far too long since our last update. It is hard to believe that tomorrow is day +70. I am very happy to report that for the most part we have been having fun and the time has flown by. We do not want to jinx anything, but the last month or so has been great. Around the middle of September Melanie started feeling better. While it was a slow process she seemed to get a little better every day. These days Melanie is running Pam and me a little ragged as we struggle to keep up with the little munchkin. We are very thankful things are quiet on the medical front. They started Melanie on the steroid Prednisone in mid-September to treat the Graft-Versus-Host-Disease (GVHD) and that seemed to do the trick. Melanie's fever and rash went away within days. Once they got things under control the doctors slowly weaned her off the steroids. We are very happy to have Melanie off the Prednisone as it kind of made her a little crazy. The frequency of our trips to Children's has also decreased significantly. Now, instead of being in the hospital every other day, we are only at Children's once a week. While we do not have the latest engraftment tests, the last DNA testing showed that Melanie is about 99% engrafted. We are thrilled that this time around it appears the transplant worked! In general the doctors tell us Melanie looks great just about every time we are in there:) They also say things like "is great that she is just floating through this ...". Overall Melanie seems to be doing about as well as we can possibly expect:). It is great to see Melanie getting back to her normal rambunctious self. As Melanie's health and strength improved, her addiction to Baby Einstein has decreased inversely. She still likes them and requests we put them on for her all the time, but she no longer sits there and watches them:). She seems to lose interest pretty quickly and becomes much more focused on more interesting things like our electric sockets or speaker wires:). "Head-shoulders-knees-and-toes" is Melanie's new favorite song. She has the "head" and "nose" part down, but she is still a little shaky on the rest of the body parts. Her new favorite toys seem to be the telephones, especially our cell phones. She just seems to love opening and closing them and pressing the buttons. Come to think of it she seems to like pushing any sort of buttons (even belly buttons ). Each day, when I come home from work, I am greeted with her smiling face and nearly uncontrollable giggling:). Melanie enjoys laughing whenever something funny happens. She gets all of our jokes:). We are enjoying a pretty normal existence. As normal as weekly trips to the hospital, flushing central lines and taking immunosuppressant drugs can be:). We still have a long way to go and are taking things one day at a time, but it is nice to feel like there is a light at the end of the tunnel. Thanks again for everyone's continued thoughts and prayers. With love, Joe, Pam and Melanie P.S. We updated the pictures on the website on 10/6, but never got around to sending out the email update, sorry about that:(. We will be updating the site with new pictures in the next few weeks. Updated on September 5th, 2005: Hello, Today was day +19. So far things have been relatively uneventful, and we hope things continue to be quiet. Melanie made it through the 9 day preparative regimen, and, so far, we have only had to spend 1 weekend (8/13) in the hospital. Our weekend in the hospital was also quiet. Melanie did have a reaction to one of the drugs (ATG) included in the preparative regimen, but she had a much worse reaction to the ATG during the first transplant. We have been told it is normal to have a reaction to ATG. The actual transplant occurred without incident on 8/17. The transplant itself consisted of an injection of the donated bone marrow through Melanie's central line just like a regular blood transfusion. The bone marrow or stem cells looked similar to normal blood as well. For the first few days Melanie did not seem to be too bothered by everything. But recently she has begun showing signs of what the doctors believe is graft versus host disease (GVHD). Melanie has developed a rash and has a slight fever pretty much all the time. While you can tell that she is feeling miserable most of the time, Melanie still does have a few moments when she appears close to her normal self. It seems Melanie has become hopelessly addicted to Baby Einstein videos. Generally, not long after she wakes up in the morning or from a nap, she grabs a remote, starts pointing toward the television and blurts out a plaintive "oh". "Oh" is Melanie's word for just about everything. Melanie has become very attached to the various remotes that litter our living room. At times, while cuddling on the couch, she will actually curl up with her favorite remote just as if it were a teddy bear. She is not exactly sure how to work them, but she knows the remotes have something to do with her favorite videos. Melanie has a special approach to working the television at her hospital appointments. We (I should say Pam and Melanie) are still at the hospital almost every other day. The rooms in the stem cell unit are equipped with a VCR and television. On one of her appointments, shortly after arriving in her room, Melanie strenuously pointed at one of her favorite nurses and then jabbed her finger at the television, punctuating her actions with a curt "oh". We would like think that "oh" translated to "Please turn on my videos." But, we are pretty sure it meant "You! Video! Now!" Another nice feature of the hospital is their collection of videos. We are not sure if Melanie likes them, but let me tell you, the Veggie Tales catalog is growing on Pam and me. "If you like to talk to tomatoes, if a squash can make you smile, if you like to waltz with potatoes, up and down the produce aisle, have we got a show for you …" Melanie's vocabulary is still pretty limited but she did add another word to her repertoire sometime last week. It seems Melanie has learned what "uh oh" means, sort of. These days with the rash and general misery, bath time is not really much fun. But last week Melanie started picking up her rubber ducky and throwing it out of her bath and onto the floor. Just after the poor flying ducky thudded against the floor, Melanie would let out a quiet "uh oh". Before Melanie started chiming in with the "uh oh's", her habit of throwing things out of her bath tub and onto the floor was mildly annoying. Now it is pretty cute. I am sure it will get annoying again at some point, but for now we just try to enjoy it. As always we are taking things one day at a time. We are not really sure where things will go with the GVHD. Our understanding is that it could stay at this level and subside, or it could progress and get worse at which point the doctors will have to start treating it. We will have to wait and see. We are still waiting on the engraftment tests that show what percentage of Melanie's new white blood cells is from donated marrow and what percentage is from her own bone marrow. The test normally takes some time and apparently the machine that does the test was broken last week. However, I am not sure we really need the results of the test as it appears engraftment is occurring. That is one positive aspect of the signs of GVHD. They think the transplant worked this time as Melanie would probably not be showing signs of GVHD if the graft failed:) As always, thanks again for everyone's continued thoughts and prayers. We really appreciate it. With love, Joe, Pam and Melanie:) Updated on August 7th, 2005: Hello, Wow, time really does fly when you are having fun. We hope this note finds everyone well. I know it has been a while since our last update, but in all honesty there has not been much to report until the last week or so. I had updated the website a few weeks ago, but I forgot to send out the email update:( Sorry about that, I attached it below in case anyone missed it. To make a long story short, the doctors finally found a suitable donor and will be starting Melanie’s next bone marrow transplant soon. And when I say soon, I mean tomorrow. We found out last Monday that the original person they identified as a match was willing to be the donor for Melanie if we could start the transplant process right away. So the doctors scrambled to get Melanie through all the pre-transplant tests last week. Pam and Melanie endured a long day at the hospital on Wednesday as they performed a chest X-ray, sinus X-ray, electrocardiogram, echocardiogram, hearing test and bone marrow aspiration on Melanie. We were happy to discover this time around the doctors are going to perform something called a “mini-transplant” on Melanie. The overall process is the same, but this time around the doctors will use less chemo during the preparative regimen. Melanie will begin the preparative regimen tomorrow receiving a bunch of different drugs for 9 days. She gets chemo for 5 or 6 of the days, then a bunch of other drugs on the other days. On August 17th the doctors will inject the donated stem cells (bone marrow) into Melanie’s central line. At that point we will begin waiting, once again hoping that the donated stem cells take root and replace Melanie’s bone marrow. The key milestones are day 0, 30 and 100. Day 0 (August 17th) is the day they inject the donated stem cells. Somewhere between day 14 and 30 is when the donated stem cells should start producing all the normal blood products (red blood cells, white blood cells and platelets), so by day 30 we will probably know if the transplant itself worked. Day 100 is about the time when Melanie’s donated immune system should be in decent shape. I believe day 100 will end up being the day after Thanksgiving. The most significant difference from the last bone marrow transplant is that this time around the doctors are going to try to do as much as possible on an outpatient basis. We are scheduled to be in the hospital next weekend and then expect to be in the hospital again at some point. The doctors have told us that in general most patients get sick and need to be hospitalized for a while. We are thrilled at the prospect that we may be able to spend many of our evenings at home with Melanie, but a little nervous that we will not have a team of specialists sitting in the next room in case something happens:) Needless to say Pam and I are relieved the doctors finally found a suitable donor and very grateful to whomever the donor may be. We are extremely anxious to start heading down the road that will hopefully put HLH behind us for good. However, while we are looking forward to getting through the transplant, we are pretty scared by all the potential risks. I have said this before, but it still holds true, we are just trying to take things one day at a time and not look too far ahead. Thanks again for everyone’s continued thoughts and prayers. With love, Joe, Pam and Melanie:) Updated on July 26th, 2005: Once again I apologize for how long it's been since the last update. We were trying to wait until we had something definitive to report. It seems we are always waiting for answers we hope to get in the next meeting with the doctors, but then after the next meeting we end up having more questions than answers. We were thrilled to celebrate Melanie's birthday a few weekends ago. It seemed like everyone, including Melanie had fun:) She's really starting to get to be a little bundle of energy and is wearing us out! Activities like eating a meal have become more of an event as Melanie gets bigger. These days Melanie has decided she's done with the baby food and being fed. She generally wants to eat whatever we're eating and feed herself. Surprisingly enough, it looks like she's developing some very discerning tastes. (I'm not sure where she gets that from:) For example, we'll load her tray up with peas and carrots. Melanie will proceed to carefully survey the landscape of food, choosing only the best peas according to her trained eye. She'll then hold the selected pea between her thumb and forefinger, reviewing it according to her specific standards. Once she's quite sure the pea makes the grade, it's popped into her mouth and the process starts over. The carrots are left to the end. Once she's finished eating the peas, if we don't provide more, she'll start carefully selecting carrots. However, the fate of the carrots is slightly different then that of the peas. While Melanie used to love carrots, it's pretty clear to us that they are no longer a preferred food. At the end of the selection process, instead of popping the carrots in her mouth, she sticks her arm out at a right angle from the high chair and very deliberately drops them to the floor. For a while, we thought this was kind of funny and did our best to not laugh. However, at this point it would seem that Melanie understands quite a bit more than we give her credit for. Judging by the look on her face as she drops the carrots on the floor right after we tell her not to, she understands exactly what we are saying. We think this has become more of an experiment for her as she explores the concept of disobedience. She's still pretty adorable, even as she tries to be a rebel:) On the medical front, we do not really have much to report. We have been in a holding pattern as Pam has been shuttling Melanie into Children's for her weekly chemo treatments. Since Melanie did have abnormal cells in her central spinal fluid, they had been administering chemo directly into her spinal column in addition to the normal chemo. However, we did get some good news yesterday as Melanie's latest spinal tap did not show signs of abnormal cells. So we think she'll just have the spinal treatments every other week now. I'm sure Melanie was happy to finally have a week without a spinal tap. Unfortunately, the overall plan is still a little up in the air. The tentative plan is to do the next bone marrow transplant towards the end of the summer either at the end of August of beginning of September. However, the plan is contingent upon finding a suitable donor. The topic of finding a donor is a bit of a sore subject for us. They had found a good match, but have been unable to reach the person after doing the initial tests. It's been over a month, so we're operating under the assumption that the person must have changed their mind about wanting to be a donor. At this point, they are bringing in additional people from the National Marrow Donor Registry for testing. We are hoping they find another suitable match. Regardless of the medical plan, our plan is to enjoy the rest of the summer as much as we can. Lately it seems our most critical problem is finding some way to stay cool as the temperature tops 100 degrees:) Thanks again for everyone’s thoughts and prayers. We really appreciate them. With Love, Joe, Pam and Melanie:) Updated on June 6th, 2005: Once again it has been far too long since our last Melanie update! The last month has really flown by. Over the past month Melanie enjoyed her baptism and has made it to several Cubs games. She’s also started to eat some finger foods like Gerber’s Puffs and Cheerios. She seems to like them both, although I think she likes playing with them as much or more than eating them:) She hasn’t really mastered crawling just yet, but she can get going with her modified creep/crawl technique. Today we managed to take advantage of the great weather and had a little family outing for dinner at The Riverview Tavern. We were able to eat outside and Melanie seemed to enjoy herself waving to the folks at the next table. While we’re still having fun, everything we do seems to be overshadowed by the fact that Melanie’s disease has returned and she’s begun her treatments again. On the Monday before Memorial Day week, Melanie’s blood tests were not as optimal as they had been. The doctors were a little worried, but there was nothing definitive. However, by Thursday Melanie had developed a pretty high fever, so we went into the clinic on Friday for a spinal tap and additional blood tests. Unfortunately the blood test showed lower red blood cell and platelet counts. The doctors also told us the spinal tap showed abnormal cells in her central spinal fluid. In addition, Melanie’s liver and spleen were enlarged. All of these symptoms were definitive signs that our vacation from HLH had ended. We’re not exactly sure what the specific plan of attack is, but so far we feel like things are going as well as they can. They began chemo again on the Friday of Memorial Day weekend. That first week was a little rough in terms of how many times the little munchkin was pricked be needles of all shapes and sizes. While it’s great that we were able to enjoy the past 2 months without a central line, without the direct lines into her system the doctors had to prick her every time they wanted to run a test and then additionally to start the chemo. It got to the point that whenever any doctor or nurse entered the room Melanie would just start screaming for fear that someone was going to stick her with something. So while in general we’re not that excited about all the hassles that go along with having a central line, we were happy they were able to put in a new central line last Tuesday to make things quite a bit easier on Melanie. In addition to having the central line placed, Melanie had two rounds of chemo last week and then has another 2 rounds this week. While the picture is a bit unclear in terms of how things are going, we’ve been told that Melanie’s liver and spleen are no longer enlarged. She also has not had a fever since before Memorial Day. In addition, we found out that while the initial spinal tap was “positive” for abnormal cell activity, they only saw 1 abnormal cell in the sample. So if you’re going to test positive, that’s about as “good” as it can be:) As mentioned earlier, we’re not exactly sure what the plan is, but we know our summer will be spent mostly at Children’s as Melanie will be receiving another bone marrow transplant. The doctors are currently working out the details, but we think the next bone marrow transplant will begin sometime in the next 3 to 6 weeks. They are also figuring out exactly what their approach is going to be this time around. While Melanie received the donor stem cells from cord blood last time around, the doctors feel this time around it would be better if she received the donor stem cells from an adult donor. Therefore, the doctors are currently looking through the National Marrow Donor Program’s database trying to find a suitable match. The doctors have identified some suitable cord blood samples as matches for Melanie and can use those as a fall back should they be unable to find a suitable adult donor, but there are some significant drawbacks to using the cord blood. We’re really hoping they find an adult donor. Overall, we’re just trying to keep our chins up as we take things one day at a time and hope for the best. While Melanie initially seemed to be pretty bothered by the chemo and other drugs, she seems to have reverted to her old self in the past few days. There for a while we really had to work for her smiles, but in the past few days she’s back to her same old smiling, babbling, creeping self which is nice to see. Thanks again for everyone’s thoughts and prayers. We really appreciate each and every one of them. With Love, Joe, Pam and Melanie:) Updated on May 1st, 2005: Well it has been far too long since our last update. Things have been a little hectic on this end as Joe's been working a bit more than he should. We've also learned a lesson with the updates. We need to strike while the iron is hot and report the good news, because you never know how long it will last. While our latest trials would luckily fall into the category of normal baby sickness stuff, they are nonetheless frustrating. We had been lulled to sleep by the past few months of calm. At least we really think we made the most of the past few months and hopefully we'll be through the latest bump in the road quickly. First, we'll start with a quick high level medical recap of the past month or so. We've had two checkups since the last update and Melanie's blood counts looked good at both. So there is no real news on the HLH front. Our doctors at Children's have been in contact with the resident US expert on HLH and upon her recommendation will be administering monthly spinal taps with the normal checkups we go in for every 4 weeks. So this past Friday Melanie had a spinal tap in addition to the normal battery of blood tests. Without getting into the details, let's just say spinal taps are not any fun at all. They are doing the spinal taps to monitor Melanie's central spinal fluid for any signs of the return of HLH. So while the spinal taps will not be any fun, at least we'll know as soon as possible if the HLH has returned to Melanie's central nervous system. In addition to the spinal taps, Melanie will receive an additional MRI to compare to her pre-transplant MRI. Now that we're done with the boring stuff we'll move on to some news of what Melanie is up to... Over the past month or so Melanie has become much more mobile. She has perfected her military style creep/crawl and is now capable of infiltrating just about any room in the house. She's even made breaks to start heading toward the stairs when Pam and I have not been looking. Melanie also remains pretty fascinated by our home office and still enjoys a good piece of paper. In addition to the creeping, Melanie has now begun to babble with the best of them. We're not sure exactly what she's saying, but she seems to enjoy her brand of talking. In addition to starting to become more active, Melanie has begun to clap and wave. We must say she's pretty close to being an expert clapper at this point. She claps along at pretty much the right spots when her talking stuffed frog (Baby Tad) sings "When your happy and you know it..." Melanie can also clap almost anytime you ask her. It's great to see her get really excited when she hears you ask her to clap and start clapping. She seems to thoroughly enjoy clapping and seems excited by the fact that she understands what we're saying. While Melanie has mastered the complicated art of clapping, she remains a novice at the wave. She knows how to wave, but just does not seem to have the timing down yet. Last week I was sitting out on the stoop with Melanie as some joggers went by. She took a look at the joggers as they went by, looked up at me, then started waving towards them just as they were turning the corner of our block and fading from view. She just needs to get a little quicker on the draw with the waves:) And now for the not so fun news. To make a long story short Melanie managed to contract the rotavirus this past week. Apparently the rotavirus is a very common thing that babies get. It's a virus that takes about 3 to 5 days to run its course causing pretty bad diarrhea, vomitting and fever along the way. Unfortunately Melanie was admitted to the hospital yesterday due to dehydration from the vomitting and diarrhea coupled with her inability to drink any fluids. Hopefully she will only be in the hospital a few days and everything will be fine. Overall, things have been going really well. We've enrolled Melanie in swimming lessons and hopefully she'll be able to go as soon as she's over her latest hurdle. We continue to try to take things one day at a time and enjoy our time together. I would like to say that we greatly appreciate all the support of all our friends and family. We are repeatedly amazed at how wonderful everyone has been. I'd also like to take a minute to thank everyone who contributed to the Music for Melanie benefit that took place in Michigan in December. We only recently found out that this event occurred and are quite stunned. Many thanks to Devee and Barbie who were the event organizers. While we know there are no answers to all of our questions regarding Melanie's future, it is comforting to know so many people are thinking of her. Thanks again for everyone’s continued thoughts and prayers we hope everyone is doing well. Take care, Joe, Pam and Melanie Late breaking news: After spending a thoroughly enjoyable weekend at Children's, Melanie was released from the hospital around 6:00 today. It's great to have her back home:) Updated on March 8th, 2005: We figured it was about time for another Melanie update. While the overall medical outlook has not changed, last week was an exciting week for us. On Wednesday the doctors removed Melanie’s central line. This was a pretty big occasion for us as it is pretty much the first time since Melanie was about 4 days old that she does not have one sort of tube or another sticking out of her. The procedure to remove the line was uneventful and Melanie was back to being her normal spastic self in a matter of hours. In addition, the doctors have taken Melanie off all of her medications. It is nice to not have to administer any medications. Although every once in a while I still find myself headed over to the area of the kitchen where Melanie’s medicine used to be around the old medicine time just out of habit. It is a little strange for us to see an empty counter space where we used to keep our pharmacy. Melanie’s starting to develop a little personality of her own these days. In addition to drastically improving her effectiveness while eating, she has also come to learn what she likes and doesn’t like. Let’s just say the meals involving apple and pear baby food are much more enjoyable than the ones involving peas or green beans. Melanie has also figured out how to stick out her tongue and blow little raspberries. I’m sure this will be amusing until she figures out she can do this maneuver with the same peas or green beans mentioned above. So far the only time Pam and I end up wearing food is when Melanie sneezes while eating. It doesn’t seem like she can do this on command yet, but I’m guessing it is only a matter of time. Melanie also seems to really enjoy just pumping her legs frantically whenever she fancies, especially when she gets excited about something exotic like a sheet of paper. While she does enjoy her fair share of toys, she really seems fascinated by the crinkling of paper right now. She is also mesmerized by our home office. I’m not sure if it is the Donovan McNabb bobble heads, or the ever exciting stacks and stacks of paper. As far as the general plan for us going forward, we don’t have to go into the hospital for another couple of weeks for our next check-up. They’ve transferred us from the Ambulatory Stem Cell Unit (the bone marrow transplant people) back to the Hematology/Oncology Unit. These next 4 weeks will be the longest time between hospital visits of Melanie’s entire life. Melanie has some minor issues with a rash that require a few different lotions, but overall we are thoroughly enjoying a pretty normal existence right now. Unfortunately, as mentioned earlier the overall medical outlook has not changed for us. The doctors are still of the opinion that it is just a matter of time before Melanie’s disease returns and they will have to perform a 2nd bone marrow transplant. While that outlook does create some anxiety as we go 4 weeks between check-ups, we’ve been told that our doctors have conferred with the leading HLH expert in the U.S. and she is in agreement with this course of action. That provides about as much peace of mind as we can expect in our situation. To summarize, and make this long story longer, we have an uncertain future, but Melanie is doing as well as we could hope for. Whether it is only the next 4 weeks or the next 5 years we’re going to make the most of the time we have. Thanks again for everyone’s continued thoughts and prayers. I plan to put a bunch of new pictures up on the website in the next week or so. Hope everyone is doing well. Take care, Joe, Pam and Melanie Updated on January 24th, 2005: After a long hiatus, the updates return... Well it's been quite a while since the last update. Fortunately not much has happened and there is really no news. Melanie was having some trouble eating and gaining weight, but she seems to have figured it all out. Now she is eating well and is up to approximately 13 pounds. We dug out of the blizzard this past weekend to make the trek to Babies R Us for a high chair. Melanie seems to view the high chair almost as if it were some sort of amusement park ride. She also has an interesting approach to eating. As the spoon approaches she likes to just open and close her mouth as fast as she can hoping the food just gets to where it needs to go. It seems to be working. She also has perfected her kung fu ninja grip. It is a bit of a challenge to get the spoon back once she snags it. On the medical front we still go into Children's for our weekly tests to see if her disease (HLH) is returning. So far, there have been no signs it has returned. The doctors have hinted that we may start to only be tested every other week, versus every week. While we would welcome the time away from Children's the thought of waiting an extra week between tests does create some anxiety and fear that we would not catch the HLH as soon as possible, should it come back. The overall situation has not changed, the doctors are still of the opinion that it is only a matter of time before the HLH returns at which point they will immediately begin a second bone marrow transplant. The disease could come back next week, or five years from now. There is also a very slim chance it will never come back. We're obviously hoping it never comes back and are really trying to enjoy every day we have Melanie home. We hope everyone is doing well and thank you all for your continued thoughts and prayers. With love, Joe, Pam and Melanie And who could forget... GO EAGLES!!!!!! Updated on December 20th, 2004: Well the results of the engraftment test have returned. Unfortunately it is now official, Melanie's bone marrow transplant did not work. While this is pretty depressing news for us, it was not surprising based on the picture the doctors had painted based on previous test results. I think there has been some confusion on a few points. First, what does it mean now that we know Melanie's bone marrow transplant did not work? This means that the donor stem cells that were injected into Melanie did not take root, so Melanie was not able to achieve engraftment. There are several things that can cause this, I think the doctors feel the biggest factor causing this in Melanie's case was the strength of the preparative regimen prior to the injection of the donor stem cells. I believe the doctors feel the preparative regimen they gave to Melanie was not harsh enough and did not obliterate Melanie's immune system enough allowing her immune system to grow back instead of the donated stem cells. The doctors were trying to administer the least amount of chemotherapy to limit the potential of negative long term side affects. While this treatment worked for a baby they treated at Childrens last year, it did not work for Melanie and her own immune system grew back preventing engraftment. So now what? The folks at Childrens have decided that the best approach going forward is to wait and see. We will go into Childrens on a weekly basis so they can run tests to see if Melanie's disease (HLH) is coming back. If it is I believe we will immediately begin a second bone marrow transplant. While we are waiting and monitoring Melanie, the doctors are also lining up a second cord blood sample so at the first sign of the return of HLH we can begin the second transplant. On a day to day basis we are very thankful things seem to be going pretty well, although once again I don't want to jinx things. Melanie seems to be vomiting much less and is gaining weight, which is good. We have our occasional problems administering the intravenous fluids we need to give Melanie at night, but I cannot overstate how absolutely wonderful it is to have Melanie at home. Her smiles and giggles really make our day. The highlight of our week was trying to get Melanie to eat rice cereal. While she really likes taking bottles, she does not seem to quite get this eating thing. I'm sure she'll get the hang of it in due time. We are also very excited that it looks like we will get to have Melanie at home for her first Christmas! I'll be updating the site over the next week or so with more holiday pictures of Melanie:) On that note we would really like to thank everyone for thinking of Melanie. We also want to wish everyone a very happy holiday! With love, Joe, Pam and Melanie Update on December 11th, 2004: Once again in a holding pattern... We've really enjoyed having Melanie home these past 2 weeks. We are settling into our new routine, as there are still quite a few things we need to do to Melanie throughout the day. The days are spent administering various medications and performing Melanie's skin and mouth care. We still have to apply 2 different lotions to her 3 times a day. Also, we still have to wash her mouth out with 2 different solutions 4 times a day. Our newest toy, the volumetric pump was delivered yesterday. For the time being we need to give Melanie intravenous fluids at night to prevent dehydration and deliver one of her medications (sodium bicarbonate). The pump is actually pretty easy to use, and we are very happy we don't have to try to deliver the sodium bicarbonate orally. I'm not really sure what sodium bicarbonate is, but it seems to cause instantaneous regurgitation. On a day to day basis things are going pretty well. While for the past week Melanie was vomiting quite a bit, she made it through the entire day today without vomiting and subsequently made it through the day in a single outfit. With all the vomiting finding clean clothes for little Melanie was getting to be quite a chore. Also, we are hoping Melanie can keep her food down on a more consistent basis, so that she can gain back all the weight she has lost. She is down to about 11 pounds. I'm thankful to report that through all of this Melanie seems to be a remarkably happy baby. While things are going pretty well on a day to day basis, the overall situation is a little uncertain right now. The bone marrow transplant does not appear to have gone as well as we had hoped. Melanie's latest test results still indicate that only about 10% of Melanie's white blood cells are actually being produced by donated bone marrow. We are waiting and hoping that this number starts to climb soon. It needs to get to about 70% for the doctors to be comfortable. So while we wait and hope for her percentage of engraftment to grow, the doctors are also running tests for any signs of a flare up of the HLH. Whether or not her percentage of engraftment improves and any indication of the return of the HLH will determine the next steps. Assuming Melanie's percentage of engraftment does not improve, the doctors will need to determine if it is best to proceed with a second bone marrow transplant, or just wait and see if the HLH comes back. There are risks to waiting to see if the HLH comes back, but there are also risks going through the transplant again. We're hoping for the best and just trying to make the most out of having Melanie home, actually sleeping in her own bedroom:) We're really hoping she starts to get the concept that nighttime is for sleeping very soon! As always, thanks to everyone who is keeping Melanie in their thoughts and prayers, we really appreciate it. The prayers seem to be working:) With love, Joe, Pam and Melanie Update on November 30th (2004): To be honest, I don't really know what to say. Today started out as one of the best days of Melanie's young life. We were discharged from the hospital today and welcomed Melanie back home. It was great. Words cannot describe the feeling. However, about an hour after we were home the phone rang. It was the folks from Children's calling to tell use the results of DNA testing to see what percentage of Melanie's new blood was produced by the donated bone marrow. Apparently only 10% of Melanie's new blood was actually produced by donated marrow. While we are not exactly sure what this means, our understanding is that there are two possibilities. One possibility is that it is just taking a little more time for the donated cells to engraft, meaning that in time a greater percentage of Melanie's blood could start to be produced by the donated bone marrow. Another possibility is that Melanie's marrow is actually growing back and will overtake the donated cells leading to graft failure. Regardless, our plan is to enjoy having Melanie home as much as we possibly can and hope for the best. As always, thanks to everyone who is keeping Melanie in their thoughts and prayers, we really appreciate it. The prayers seem to be working:) With love, Joe, Pam and Melanie PS: We'd really like to say thanks to all the nurses at Children's! They are great! Update on 11/23/04: Well, things are going about as well they can. Melanie began the stem cell transplant as planned on October 25th. She was able to complete the first week of the process as an outpatient and was admitted to the hospital on October 29th. Thankfully things have been very uneventful. So far there were only 2 moments of note. The first was during the conditioning (on 11/1) when Melanie reacted to one of the drugs (ATG) she was getting and developed a fever of 104 degrees. The doctors administered some other drugs to counteract the ATG and that seemed to do the trick. Then, the following week one of the residents noticed Melanie seemed to be laboring a little bit when breathing. The doctors ran some cultures and did a chest X-ray to check for any potential infections. Luckily the cultures were negative and the chest X-ray was normal. They did notice that her hemoglobin level was in the 8's, so they gave her a red blood cell transfusion that seemed solve the problem. Since Melanie currently has no effective bone marrow while we wait for the stem cells to engraft, she does not maintain her blood counts very well and requires periodic transfusions of red blood cells and platelets. They had been letting her red blood cells get down into the 8's before transfusing, but now try to keep her above 9 or so and that seems to have resolved her breathing issue. We are living a relatively mundane existence right now as we trek to and from the hospital. Our days are spent administering various mouthwashes 4 times a day and various lotions 3 times a day while giving her a host of oral medications. The mouthwash and lotions are to prevent her mouth and skin from breaking down as a result of the conditioning chemotherapy and her complete lack of white blood cells. So far it seems to be working as she has not developed the mouth sores we were warned of and her skin has not broken down too much. The one area of pain is the severe diaper rash she has developed. Our understanding is that it cannot really heal until her white blood cells start to grow back. Overall, Pam and I are very thankful things are going as well as they are. We're praying everything continues to go well and don't want to jinx anything. With the exception of when you are changing her diaper, Melanie is a really happy baby and we hope she continues to be happy as we take things one day at a time. As always, thanks to everyone who is keeping Melanie in their thoughts and prayers, we really appreciate it. The prayers seem to be working:) With love, Joe, Pam and Melanie Update on 10/11/04: Hello, Well, we spoke with the stem cell transplant doctors last week. They gave use a short tour of the ambulatory stem cell unit and told us all about the stem cell transplant Melanie will undergo. We've gotten a bunch of questions about stem cells and bone marrow transplants in general, so I'll try to provide our understanding of what's going to happen. First of all, the terms stem cell transplant and bone marrow transplant are pretty much synonyms. The bmt transplant is not like an organ transplant where it is a singular event, but is more of a process and the process will begin around 10/25 for Melanie. Here is the basic sequence of events. This week, Melanie is getting her last round of her original chemo regimen that began back in August. Between now and the 25th Melanie will undergo a bunch of testing prior to beginning the bmt. She will be getting a spinal tap, bone marrow aspiration, chest ultrasound, head MRI and will undergo some neurological tests such as vision and hearing tests. She has already had some of these done and will get the rest done in the next week or two. The purpose of the tests is twofold. First the doctors want to make sure she is in the best possible shape going into the bmt, and second they want to have a baseline to measure any changes that my occur as a result of the bmt. Melanie will begin the conditioning phase of the bmt on the 25th. This will involve about 10 days of very high doses of chemotherapy designed to kill all of Melanie's bone marrow. The idea is that they have to basically remove Melanie's immune system prior to injecting the new stem cells, so that the donor cells can really take root. This treatment obviously comes with inherent risks and will result in side effects such as the loss of the little bit of hair she has and extreme agitation of her digestive system, among other things. Then after Melanie's immune system has been knocked out, they will inject the donor stem cells from umbilical cord blood through an IV. The day they inject the stem cells is known as day 0, and all time is then measured from that point. Generally, between days 14 and 30, the donated stem cells start acting like bone marrow and begin to produce blood cells (red blood cells, white blood cells, and platelets). While all of this is going on, Melanie is extremely susceptible to infection. They can do some of the beginning of this process as an outpatient, but Melanie will likely be back in the hospital as an inpatient again starting on the 25th. We’ve been told to expect that she will be in the hospital for at least 4 to 6 weeks. They have also cautioned that since she is so young they would error on the side of caution and keep her in the hospital as long as needed. She will be in the Oncology/Hematology Unit, just like she was before, but this time she will be in an isolation room that is designed to provide as sterile an environment as possible. To sum it all up, there are a bunch of pretty terrible risks, but also a pretty good chance we’ll be well on the road to recovery and have Melanie home before Christmas. At that point, Melanie will hopefully be home, but will still be at an elevated risk for serious infections. We’ve read that day 100 is about the point where Melanie’s immune system should be in pretty good shape again, which would probably be sometime in February. So we are looking forward to getting through all this and hopefully be able to experience a much more normal existence in the spring, about the same time when Cubs pitchers and catchers report back to camp to start their run in ’05:) Once again we would really like to thank everyone for keeping Melanie in their thoughts and prayers. Knowing how many people are thinking of her really helps:) With love, Joe, Pam and Melanie PS: We’ve started putting together a web site, I’m not sure how often it will get updated, but it does include some pictures we like:) http://home.comcast.net/~joseph.kurtz/Family_Home.html Update on 9/21/04: Hello, Well, things have been relatively quiet on the medical front for the past month or so. Melanie is doing about as well as she possibly can and we are really just trying to take things a day at a time and enjoy having Melanie at home. Her treatment has been going well and we were actually able to take her to 2 Cubs games and 2 Northwestern football games:) She is 2 – 0 at Cubs games, but only 1 – 1 for the Wildcats:) Regarding the latest medical news, they have identified a cord blood match for Melanie and they did not find the abnormal cells in her latest spinal tap. So that is about the best news we could have hoped for. We are still not really sure exactly when they will begin the bone marrow transplant. At the end of her current set of chemo, which ends in 3 or 4 weeks, they will do a bunch more tests to see if she is really ready. If she is, the doctors have said they will start the bone marrow transplant then. Once again we would really like to thank everyone for keeping Melanie in their thoughts and prayers. Knowing how many people are thinking of her really helps:) With love, Joe, Pam and Melanie Update on 8/15/04: Hello, And now for some much needed good news, we were pleasantly surprised this past Wednesday morning when the doctors mentioned Melanie could probably go home after her chemo treatment on Thursday. At this point we were a bit stunned and had to ask the doctors a few times to make sure they meant the same day after the chemo treatment versus any point after that. We've come to learn you really need to pin these doctor types down regarding the specific meaning of relative terms:-) So this past Thursday almost a month to the day after she was born Pam and I were able to bring Melanie home:-) It seems the chemo is doing what it is supposed to be doing and Melanie has stabilized to the point we can take care of her at home while continuing the chemo on an outpatient basis. We are very excited to finally be spending time with Melanie at home. As far as the overall status, we go back to the Children's Memorial Day Hospital on Monday for the next round of chemo. The high level view of the plan is that we have to keep doing the chemo and then we have periodic evaluations to determine the specific next steps. They did find abnormal cells in Melanie's central nervous system so they will have to keep pretty close tabs on that. I'm not really sure what the timetable is regarding when she will be ready to begin the bone marrow transplant process. At this point we are really trying to take things one day at a time. It is much easier to take things a day at a time, when those days are spent at home:-) I've received some contact updates and have revised the routing list, so I've included all prior updates below to make sure everyone has the complete story. As always, we really appreciate all the thoughts, prayers and support everyone is sending our way. With love, Joe, Pam and Melanie Notes: * Some people have asked about information regarding HLH, some links that have some good articles and general information are http://www.histio.org/association/library/hlh-fhl.shtml and http://www.histio.org/society/HLH/index.shtml * We can't say enough good things about the staff at Children's Memorial those folks are amazing. Update on 8/10/04: Hello, Once again I would like to thank everyone for the overwhelming support being sent to Melanie, Pam and I. We really appreciate the emails, cards and packages. The doctors have determined that Melanie has something called Hemophagocytic Lymphohistiocytosis (HLH). It is a disorder where her bone marrow is producing some bad white blood cell lines that are consuming her platelets and red blood cells while causing some other extraneous issues. She has been transferred from the Neonatal Intensive Care Unit to the Hematology/Oncology Unit to begin treatment. The treatment is a staged drug protocol involving chemotherapy and some other drugs. She began the chemotherapy yesterday. The treatment is aimed at bringing the disease under control by killing the bad cell lines that are consuming her platelets and red blood cells. Once the disease is brought under control and Melanie stabilizes she will then need a bone marrow transplant. My understanding of the bone marrow transplant process is that they need to clean out all her existing bone marrow and then inject the right kind of stem cells through an IV. I’m not really sure how the stem cell know to where to go and what to do, but I’ll take the doctor’s word for it. It looks like we have a bit of a rocky road ahead of us, but we are at least rolling towards solving the problem. The one pretty big outstanding unknown is whether the disease has infiltrated her central nervous system. If it has, that changes things a little bit. Thanks again for everyone’s thoughts and prayers. With love, Joe, Pam and Melanie Some additional interesting notes: * The doctors seem intent on making the differentiation that she does not have cancer, but her condition is treated in the same way as cancer. I don’t really see how this is relevant at all. * Some folks have asked about the potential for being a bone marrow donor… Based on our conversations with the doctors it looks like the best source for the stem cells that Melanie will need will be the cord blood bank. Cord blood is actually blood taken from the umbilical cord just after birth. While Melanie’s cord blood would have been absolutely useless since her cells are screwed up, this is definitely something Pam and I will think about doing the next time around. Also, while we most likely will not be able to help Melanie, Pam and I are registering with the bone marrow donor registry to potentially help someone else going through a similar situation. While joining the bone marrow registry as a potential donor is totally a personal choice and in this instance will probably not specifically help Melanie, it could really help someone out there and is something you may want to think about. I think you can do this wherever you can donate blood. Update on 7/28/04: Hello, First, I’d like to thank all of you who have provided much needed support to Pam and I through the last 2 weeks or so. For those who have not yet heard, Pam and I were delighted at the birth of Melanie Nicole Kurtz on 7/13/2004. She’s is 20.75 inches long, 7.0 pounds and very, very cute. Pam is doing fine and recovering nicely, however Melanie has been transferred to Children’s Memorial Hospital. While the doctors are not absolutely certain, it appears she has a milder strain of a pretty serious and pretty rare blood disorder whereby some of her cells are actually “eating” her red blood cells. They are planning to do a bone marrow test to verify this diagnosis and pending the outcome are optimistic. If they can verify that she has a “milder” strain of the disease the doctors believe the prognosis is good and are optimistic that Melanie will respond to treatment involving chemotherapy. Needless to say, Pam and I are devastated but extremely optimistic things will work out and Melanie will be ok. We (including the doctors) are encouraged by her behavior as she is still eating, crying, and pooping like a healthy baby. Also, in the words of the doctor’s she is “feisty” despite the anemia which causes her to appear extremely pale. We are hoping for the best and anxious to get started on what is looking like a long road to recovery. We appreciate everyone’s thoughts and prayers. With love, Joe, Pam and Melanie Update on 7/17/04: Hello, First I would like to thank everyone who has listened to me drone on about the joys of first time parenthood over the past few days. Second, I would like to mention that this is NOT the official announcement with official pictures and all that good stuff. I will be sure to bore you all to tears with many emails on the comings and goings of Melanie. I just wanted to get a quick email out there, so please do not be offended if you are forwarded this message and were not on the first routing. I’m trying to put together a complete email list and pick out the perfect picture, please attribute any omissions to severe exhaustion on my part even though Pam did all the work:) Here are the particulars: * Name: Melanie Nicole Kurtz * Born: 3:40 PM 7/13/2004 * Weight: 7.0 pounds * Length: 20.75 inches * Intangibles: Incredibly cute Also, for the current status: Melanie was born on Tuesday and other than being a bit jaundiced, is eating and sleeping and pooping just like a happy healthy baby:) However, there were some irregularities with some of the additional test results so they are keeping her in the hospital for additional testing and observation. We are hoping to know more shortly and praying she can come home soon:) With love, Joe, Pam and Melanie

In case anyone missed any of the specific updates, all the "official" Melanie press releases are included below: