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Thursday, December 27, 2007 10:50 AM CST

Hello Friends and family,

We made it home for Christmas, and while it has been a very hectic schedule, it was beautiful just to be able to spend the holiday at home. Luckily, this year Santa was able to do a lot of on-line shopping and so even though we’ve either been in the hospital or out of town, the presents found their way under the girls’ tree Christmas morning.

Since we knew we were going into the hospital the morning after Christmas, the thought of doing all the festivities and dinner at our house was not very appealing. So we had the morning together opening gifts and a big breakfast, then spent the rest of the day cleaning up after both. Then in the afternoon, through the generosity of Diane’s brother and sister-in-law, we loaded up the family cruiser full of food and went to their house for dinner…and of course more presents.

In the days prior to Christmas, Emily has been bombarded with fun. Since she was able to go back to school, she got to take part in her class Christmas party on Thursday, and the school’s annual “Jingle Bell Jog” on Friday. It was so heartwarming to see Emily running on par with all her classmates, especially considering that weeks before she was in a bed 24 hours a day, and even a walk down the halls of the hospital was a chore. She ran tirelessly the entire way only stopping to get hugs from teachers and others there that hadn’t seen her in over a month.

Then on Saturday, came the pinnacle of the weekend holiday triumberant, which was a huge Christmas party put on by Gilda’s Club. They made a deal with a local fire station that had just opened, and it was full of shiny trucks and equipment. Emily and MaryGrace got to go up in the ladder truck platform, use the big hoses, and run all around the firehouse. Then there was a whole truckload of snow delivered that everyone played in for hours (including the fire fighters), and to top it all off, Santa arrived atop a huge fire truck, and needless to say, there were gifts galore.

Emily did have a tough go with her ICE treatment, but between Broadway shows, sightseeing in New York, friends and teachers at school, and numerous Christmas parties, I think she has bounced back just fine. MaryGrace misses her sister when she’s gone, but she has enjoyed all the same activities, so overall, I think the girls have enjoyed the holidays.

We are now starting day 2 of Emily’s new chemotherapy, and for whatever we can tell, she is tolerating it just fine. We don’t quite know what to expect for side effects because although she has had this combo before, it was after her first relapse and that was nearly two years ago in January ’06. So for now, we will just monitor her blood counts, heavily pre-med her for the nausea, and pray for a quick visit this time and get out after the last day of chemotherapy.

Diane is working during this hospital stay and with all the time she missed during November, we are just trying to get back on track. The good thing is that the weekend is only two days away, and during that time we can all hang out together more in the hospital. But whoever goes home to sleep has the daunting task of attempting the post-Christmas cleanup. We’ll probably have to flip a coin for that one. I mean, hmm…let’s see…hospital food again and sleepless nights with the IV pump beeping constantly or facing that mountain of boxes, paper, and garbage that has to be sorted and put away. It will be hard to pick a loser in that scenario.

We are thankful for all our friends and family, our church families, our hospital doctors and nurses, and even strangers who have come forward during this holiday season to extend their prayers and well wishes for a happy Christmas season. We have made the most of a crummy situation for the holidays, but we are home, we are together and Emily’s happy. After that, nothing else matters. Please continue to pray for Emily and all the other little children that are in this fight. Until later,

Good Day and God Bless,

David and Diane

Thursday, December 20, 2007 8:42 PM CST

Hello Friends and Family,

We’re home, and as much as we like New York, it’s nice to be back.

First off, Emily’s scans went well, and the preliminary review shows that her disease was stopped in its tracks, and in some areas, has decreased. It really isn’t the optimal result we would have hoped for, but in the world of Neuroblastoma it is good news. As long as the disease is slowed down or stopped and not progressing, that’s considered a move forward. Emily is going to continue chemotherapy, but the new combination of drugs is going to be much milder on her blood counts and other side effects (topo/cyclo for those of you in the know).

While in New York, we took in yet another Disney Theatrical production and the girls saw The Little Mermaid (see new pictures on the photo page of the web site). That makes five different shows they have seen, and all things being equal, they have seen more shows at seven years old than Diane and I have seen in a lifetime…where’s the justice?!? The next day, we went down to Rockefeller Center and saw the Christmas tree and all of the sights, but it was blistering cold, and winds were as high as 40 mph so it was a bit tough to enjoy things in that environment. Nevertheless, we did the tourist route, and had lunch in midtown, then headed back to our room at the Ronald McDonald House where there were parties every day for the kids.

We flew out Monday evening and got home late that night, and Emily went to the doctor on Tuesday to make sure she was okay. As it happens, she was increasing her platelets, and her white count was fine, so she got the stamp of approval to go, dare I say, BACK TO SCHOOL.

From here, Emily is going to get a new chemotherapy regimen and we will go back for scans in New York in Late January early February.

Until later,

Merry Christmas and God Bless,

David and Diane

Monday, December 10, 2007 10:15 PM CST

Hello Friends and Family,

We’re out !!!

Emily bounced back with a vengeance and when the doctor came in to see her on Saturday morning, he asked why we were still there. Her white count and ANC were like that of a child who never had chemotherapy, and since the hospital is full of sick people, they saw to it we were out of there immediately to avoid her potentially catching something.

We had a restful Sunday complete with pancakes and all, and then did very little. Well actually we did a lot of little things around the house but after a month in the hospital, you appreciate even the most mundane tasks. Then we had a quiet evening home…as a family all under one roof for the first time in a long time, and it was good.

Then Monday it was straight to the doctor because we felt Emily would need blood products without question, and we wanted to get in and underway as soon as possible. However, as luck would have it, her labs showed her as healthy as any other child on the street today. Emily’s white count was through the roof, and her ANC was high as well. We struck a home run, and she may be coming out of the woods already, so we are happy she was in such good shape.

Next comes the tense part. We fly out Thursday to New York for a new scan of Emily’s body to see if this grueling round of chemotherapy that has kept her isolated for a month did it’s job and eradicated the cancer. If it did, then the mystery is “where do we go from here?”, and if it did not, our question is “where do we go from here?” So from here we just wait.

We ask that while you remember Emily in your prayers; please also think of all the other children who continue to fight this battle.

Until later,

Good Night and God Bless,

David and Diane

Monday, December 3, 2007 9:01 AM CST

*** SEE 12/04/07 UPDATE BELOW AT P.S. ***

Hello Friends and Family,

Emily has now been in the hospital for three full weeks, and it appears that she is beginning a recovery. Even though the CBC doesn’t show any improvement yet, she is sitting up, playing on the computer, and in the past two days, has actually started eating again. This is good because going three weeks without eating, leads to not “wanting” to eat anymore, so the fact she has gotten her taste for food back, we are encouraging anything she will put in her mouth, nutritious or not. If she wants Cheetos for breakfast and ice cream for lunch so be it…well, maybe not that bad, but pretty much anything goes.

Emily is still at all zeroes as far as her blood counts go. She has no white cell count and absolutely no ANC so as a result, she has no immune function. For this reason, we have limited her visitors to family only until she is in better shape. It’s lonely for her, but we have to think of her health and safety first. So until she gets immune function back, her friends are her family.

While we don’t know where this strep infection in her blood came from, the cultures have been clear for over 6 days now and this is a good sign. She does still occasionally get a low grade fever and just teeter around the temperature that would call in the doctors, but never quite high enough to cause alarm. In fact, one of our doctors here actually said that a low grade fever is sometimes an indicator of recovering blood counts, so we’ll take that to the bank and keep praying for her healing.

As you can see from the picture, the hair is all gone, and Emily seems to be okay with it. She will wear a hat, or a bandana, but doesn’t necessarily “need” to, she’s happy with herself. She did obsess with looking in a mirror during the days it was coming out so she could see the progress, but now that it’s gone, she hasn’t asked for a mirror ever since.

As for now, we just wait for Emily’s blood counts to come up so we can go home and allow her to continue to recover. Being home will make life a little easier, but she has a lot of healing to do before that day comes. All we can do now is just wait and push the food on her, and continue to pray.

Lastly, as promised, we got Emily’s code for her “Giving Tree” at Lunch for life. If you want to contribute to this wonderful charity in Emily’s name (the money goes to Neuroblastoma research, not Emily) just go to www.lunchforlife.org , and follow the instructions. When it asks for the giving tree code, enter 25124 for Emily, and we will keep track of how many ornaments Emily gets on her tree.

So until later,

Good Day and God Bless,

David and Diane

P.S. - As of this morning's blood draw Emily has a WBC of 0.3, and has 15 neutrophils!!! She's on her way back up, Hallelujah!

Wednesday, November 28, 2007 10:12 AM CST

Hello Friends and Family,

We are just over two weeks into treatment of this newest setback, and things are going pretty much as expected.

Thanksgiving was wonderful, and we made the most of our “Hospital Home” as we watched the Macy’s Parade on television and took in a hot turkey dinner from the cafeteria. Okay, so nothing’s perfect, but what can you do?!? At least we’re close to home and can take turns being with the girls and going home for a good night’s sleep every other day.

As always, Emily’s treatment can’t be limited to the cancer itself, it always has to be complimented with a host of other problems that complicate her recovery process, and extend her hospital stay. I’ll try not to get too technical, but her additional issues include a bout of diarrhea and extreme stomach cramping that has lasted two weeks with no signs of improvement, a lot of nausea (which was to be expected), bleeding in her bladder which was caused by one of the chemotherapy agents, and most recently she tested positive for a bacteria believed to be a strain of strep in her blood. Emily developed a good bit of swelling in her jaw area around the ear down to the neck and we are hoping this will be addressed as a part of the newly discovered strep.

For the most part she has kept her good spirit and for the last two days, she seems to be feeling better. Hopefully the scores of medicines she is receiving are doing their job, and she is beginning an upswing in her healing. Emily’s counts are basically all zeros and this too was expected but we are holding out hope that she may start climbing up and out of this situation any day now. We just pray, because the sooner we can get her out of this hospital, the better. We are pretty confident that once out, she will start to eat, and she will certainly have a lot less chance of catching something else from the countless number of diseases found in a pediatric hospital.

Lastly, Emily’s hair has begun falling out, and even though she seems fairly well adjusted to it all, as a parent you never quite get used to watching it happen. The poor thing finally got her hair back to a good length after the first relapse (January ’06) just to watch it all come out again. She has taken the attitude that she wants to save it all and send it to “Locks of Love” like Mommy did, for as she put it, “little kids who don’t have any hair, so they can make a wig.” Of course her hair is nowhere near long enough to do this, but we are collecting every strand and putting it in a bag, and we will send it to “Locks of Love” anyway. I think if we send it with a letter describing the scenario, they will gladly oblige her with a Thank You note.

As we enter the holiday season, and upon the news of Emily’s relapse, many of you have asked “What can I do?” and fact is, we are doing all that can be done at this stage for Emily right now. We caught his early, attacked it with high dose chemotherapy, and are waiting for her to recover so she can go home and finish healing. In addition, we are blessed that we were able to do this at our home hospital and allow her to be in comfortable surroundings with regular visits from friends and family. We are thankful that we did not have to interrupt MaryGrace’s school and that Diane and I can alternate caring for the two girls. We have been so fortunate over the years to have received so much help from everyone in our community that we just don’t have it in us to ask for any more.

However, if you are interested in addressing the bigger picture, there are a number of charities who have mobilized to make advances in research of Neuroblastoma. One such organization is a small grassroots effort called Band of Parents. This is a group of parents who have children being treated at Memorial Sloan Kettering in New York and they met with the principal doctor doing the research on Neuroblastoma. It was explained that with sufficient funds, MSKCC can begin a study using a humanized version of the 3F8 Antibody Therapy. The current and previous versions were derived from mouse antibodies and are believed to be less effective because once infused it’s just a matter of time before the body realizes it is from a mouse, and kills the cells before they can do their job. Hence, the researchers feel that a humanized version may produce better outcomes. One of the fundraising activities that are underway is a Holiday Cookie Sale, so feel free to check it out. All the links related to this group and their activities are further down on the page. Also, Emily will have a Giving Tree at the Lunch for Life webpage, and this organization also contributes all their funds to Neuroblastoma research. We do this every year, and once we get Emily’s giving code number, we will include the info in our next journal update.

So for now, we pray for a quick recovery for Emily from this most toxic treatment and good spirits for her as she has to spend her days almost completely alone. Please also remember all of the children battling this and related diseases, and pray for advances in treatment, and dare I say…a cure.

So until later,

Good Day and God Bless,

David and Diane

Thursday, November 22, 2007 0:13 AM CST

Happy Thanksgiving Everyone,

Emily is doing as well as can be expected right now, but it’s not pretty.

We were impressed at how seemingly easy things went for her over the past week, but the chemotherapy ended Monday and she has been on a steady decline ever since. The nausea has been all but constant and her energy and weight loss continue to fall off, and it’s a bit upsetting.

Emily’s nausea has been so constant that she now is having blood come up from her throat, and we are actively searching for ways to slow it down or stop it. She had a number of anti-nausea medications this morning, and none of them worked. After which, she started complaining (almost crying) about her throat and as a last resort, the doctor prescribed morphine to alleviate her pain. With all of these drugs on board, Emily perked up and took on the day as if there were nothing wrong, and entertained a number of people who came into the room during the afternoon. It made no sense but she had a good 6-8 hours of feeling good, and she took advantage of every second. But then she declined again, got some pain medicine tonight and went to sleep.

Emily’s case of rotavirus continues to also be an issue and this combined with the vomiting and not eating, the GI doctors have stepped in and she is now on IV nutrition (TPN) as well as some things to settle her stomach.

Needless to say we will be in the hospital over the Thanksgiving Holiday, and depending on how Emily’s immune system goes, we may be there for weeks to come.

Whatever the case, we are mindful of the following in the spirit of Thanksgiving:

• We are thankful for friends who continue encourage us with words of inspiration
• We are thankful for church leaders and church friends who continue to lift Emily (and us) up to the Lord in prayer for strength and healing
• We are thankful for the knowledge of the doctors and care of the nurses who
continue to have alternative treatments plans, and care available for a
disease that a few years ago there were little or none
• We are thankful to have each other as a family and be able to get through these tough times together
• We are thankful for Emily’s strength and good spirit that allows her to
continually go through these different treatments without fear, and come out
the other side as happy as when she went in
• We are most thankful for our Lord that hears our prayers for Emily’s healing
and the fact we know that our prayers will be heard, and answered

We hope for a good Thanksgiving for everyone, and healing for all of the children fighting this and related diseases.

So until later,

Good Night and God Bless,

David and Diane

Tuesday, November 20, 2007 2:33 AM CST

Hello Friends and Family,

Emily is doing well, and while this is her last day of chemo, we are not going home just yet.

But before we get too far along in this update, we just wanted to stop and say “Thank You” to all of you who have taken Emily into your hearts and offered prayers, well wishes, and good intentions in her guestbook. There are those of you who know Emily and want to see that beautiful innocent face come out of the other side of treatment still smiling, and there are some who have never met her and been touched by her stories of perseverance and wish her all the same blessings as she battles this monster. No matter how it is that you know Emily, we are thankful that you have taken time out of your lives to embrace her, recognize her needs, and pray for her. Whether it is done as a family or individually there are people who have made it a part of their daily devotions to ask God to watch over Emily in hopes for a full a recovery, and again for that we are thankful.

Today is day five of Emily’s chemotherapy, and she has had her tough times dealing with the medicines. She has eaten nothing for the past four days, and everything she has attempted to eat has been lost to nausea within minutes from getting it down. As a result she has lost 5-6 pounds and for a little child that is a lot. In addition to battling the effects of chemotherapy, she has also contracted a case of rotavirus and what is not lost to nausea, is lost to diarrhea.

Emily is so in tune with her treatment, that she almost knows ahead of time when she is going to get sick, she knows what IV medicines are going to make her sleepy, and asks for certain medicines by name when she thinks she needs them. This is all at the age of seven. Probably one of the most poignant times was today when she looked at Mommy and asked, “When is my hair going to go away?” I know we said we would always be honest with her, and have been, but this was quite a question coming from a little girl who has just gotten enough hair back (since the last hair loss relapse) to make an ever so small pony tail. This combined with the fact she is forever watching High School Musical and Hannah Montana we would have expected the hair loss to be a bit more of a traumatic issue, but not for Emily.

In the last two days of her treatment, Emily has also developed hemorrhagic cystitis and is bleeding in her bladder. This is a side effect of one of the chemotherapy agents in the ICE protocol, and since the chemical is filtered and excreted through the bladder, the longer it is in her body, the more damage it does to the bladder. We are attempting to get the bleeding under control as quickly as possible through a lot of IV fluids and special medications. This is especially important right now because once her counts fully drop (mostly her platelets which provide the ability for clotting) it will be much more difficult to stop the bleeding.

We have pretty much accepted the fact that we will be spending the Thanksgiving holiday in the hospital and that is just fine. Believe it or not, they sell turkey year round, and we can celebrate our Thanksgiving in her hospital room both the day of the actual holiday, as well as when we go home and are truly thankful she made it through this cycle. It’s all a state of mind and we remember when there was a time when we went almost two years with all of our holidays in the hospital, so to do it one more time is not that big of a deal.

We look forward to healing for Emily, and ask prayers for that and her overall good health as she concludes this cycle of gruesome chemotherapy. We are far from out of the woods on this one, but in a measure of baby steps, these five days are behind us now.

So until later,

Good Night and God Bless,

David and Diane

Saturday, November 17, 2007 9:21 PM CST

Hello Everyone,

As of this evening, day 3 of Emily’s chemotherapy treatment is completed and although she has had a few rough spots, it’s not as bad as we expected. While we anticipate the side effects to be cumulative and will probably get more severe, we are 60one right now and are thankful she’s not worse off than she is. Emily has no appetite at all now, and even her favorite foods are limited to a bite or two with hours in between eating anything at all.

After Sunday & Monday she will be finished and we will hopefully be discharged to go home, and await the second leg of this fight. Once her blood counts drop, she will most likely get a fever, and we will head back to the hospital for what will be upwards of a two week stay at best.

Emily will have to remain completely isolated at that point as she will have no immune system, and the least little outside germs could be dangerous, so we will be in hiding during that period just to keep her safe.

We added some photos on the page of Emily in her new surroundings at the hospital, and for now, this is home.

We will update as things progress, but as of now, this is where we are.

So until later, Good Night and God Bless,

David and Diane

Wednesday, November 14, 2007 9:41 PM CST

Hello Friends and Family,

The only thing consistent in this world is change, and this has never been truer than this week. Once we realized we could get Emily’s treatment here (in Florida) based on the MSKCC recommendations for her situation, we started preparing.

We spent the end of last week doing basically anything Emily (and MaryGrace) could have wanted, from seeing “Bee Movie”, to baton twirling classes, to watching the newly released “Ratatouille” at home eating popcorn, to horseback riding. We don’t know how long this chemotherapy and recovery is going to be, so they really got their way these past few days.

However, Monday came and it was time to go face the music. We packed like we were going away for a month, headed to the hospital, and started our newest journey. While it was like “homecoming” day, it became emotionally exhausting to continually repeat to unknowing well-wishers why it was we were there. We had digested all the recent news, dealt with it mentally, and were ready to go to work on this with a completely straight face. But after a while, the reality sets in all over again why we were there, and we just wanted to get to our room, and start.

Step one was a GFR (kidney function) test in nuclear medicine, and that went fine, and the results were even better. Emily’s kidneys are great. After a close call many years back, we were afraid that her weakened kidneys might impact the dose of chemotherapy she could get and as a result, not knock out the recurring disease present in her marrow. So, with that behind us, we went up to our room, and awaited our next step. This is where it gets fun.

Our doctor here came in and expressed his condolences for the relapse, and seemed very confident we were going to knock this out here and now. Then the other shoe dropped when he said “Do you have the results of the bone marrow biopsies with you? Because I know you wouldn’t come in with anything less than all the answers, you’ve been at this too long.” It was right there that we realized we had nothing. In New York we had a scan last Wednesday at 8:00, done at 10:00, met the doctor and got the horrible news at 12:00, and left our room for the airport at 2:00, never thinking there would be a need to substantiate these findings when we got to our home hospital. But we did need to. After all, they were being asked to administer one of the most toxic chemo combinations known and had nothing to base it on other than our good word and a couple of e-mails outlining the dosing and such.

So, step one of getting all of this together was to call New York, and get copies of everything sent down. Next, we had a discrepancy in how the dosing of the Carboplatin is done in New York vs. here, and to resolve it, they require the aforementioned kidney function nuclear medicine scan, so there was our Monday. Now that we know that her kidneys will tolerate treatment, the doctors here still wanted the results of the bone marrow “biopsies” before beginning, and nothing was going to change that….well what do you know,…… the results were negative, hence, another monkey wrench.

So, with negative bone marrow biopsies, negative CT of the whole body, and a slightly elevated LDH level, the docs here were not so quick to jump on this ICE therapy protocol, even though our doctor in New York said it was a foregone conclusion that she had rapidly progressing disease in her marrow. Well, finally, late last night additional information came over indicating that her bone marrow “aspirates”( a different part of the bone marrow test) were positive even though the biopsies were negative, and her VMA levels were also elevated, and all of that combined said, we need to get rolling on this chemo.

So in a couple hours, we are off to the hospital again, and Emily will spend the evening getting “pre-hydration”, and first thing in the morning will be ready to get the chemo. We will do this for five days, and hopefully leave after that, and await her fever (which she gets after every round of chemo except for Irinotecan) then it will be back to the hospital while we wait for her counts to recover. All told, we will probably be occupied for about a month. Then, we will fly back to New York and get rescanned and see if this did the trick.

We just ask prayers of healing and strength for Emily, and for all the little children fighting right now. In addition, we ask for prayers of wisdom for our doctors so that they may be guided in the right direction for Emily’s healing with minimal side effects.

So until later,

Good Night and God Bless,

David and Diane

Thursday, November 8, 2007 9:08 PM CST

Hello Everyone,

It is with the heaviest of hearts that we begin this journal update.

We left New York yesterday with news that no parent should have to carry or endure whether they be a parent of a cancer child or any other.

Emily‘s scans have revealed disease (Neuroblastoma) in multiple “hot-spots” that light up on scans that our doctor feels is most likely bone marrow involvement. This was shocking to us on many levels, mostly because of Emily’s overall good health and demeanor and on top of it all, her blood work is almost perfect. Then there’s the word “almost” which starts this series of concerns. Her LDH levels were quite high and that indicates a possibility of bone marrow disease and when combined with the scans, it was conclusive… Emily has relapsed for a third time.

However, this time is different. In the past, Emily has had soft tissue tumors that were removed surgically, irradiated, and a little chemo and she was good to go. This time, there appears to be no soft tissue involvement, and from the placement of the hot spots, it’s all marrow related. She had “uptake” (what the doctors’ see when looking at a scan) in both sides of her hips, femurs, her right tibia, her right arm, her spine and a spot on her skull. Needless to say we were floored and almost unable to speak while we tried to discuss this with the doctor. In spite of it all, we kept it together, and got an understanding of what was ahead of us.

What is ahead of us is “ICE”…for those of you who know, you know. For those of you who don’t know what ICE is, it’s one of the ugliest combinations of chemotherapy agents out there, and it’s about to be unleashed on an otherwise healthy seven year old girl who doesn’t know what’s going on because she feels great.

While we are ready to fight the good fight, we had to sit Emily down, and tell her what we were up against in child friendly terms.

Diane did a phenomenal job of telling Emily that the bad cancer had come back and we had to hurry and get some chemo that would eat it up, and later compared it to a “Pac-Man” Game. She continued to tell her that the chemo might make her feel yucky sometimes, and then the other shoe dropped. Mommy had to tell her that she was going to lose her hair again, for the third time. While it’s not pretty, we have never lied to Emily, and we feel that part of her good demeanor is the fact that she knows that what her parents say is true…always.

The good news is (if there is such a thing) she needs no operations which made Emily feel better. But, the chemo is ugly, and all we can do is make her comfortable throughout treatment and be attentive to her needs.

So as for now, we are making arrangements to be in the hospital for a while and depending on our little girl’s immune system, we probably won’t be home for a few months. But this, as with all previous battles, will be fought with a strong family and without falter of prayer or faith.

With prayer requests for Emily and all the children fighting this disease, please remember them...for some, prayer is all they have.

Until later,

Good Night and God Bless,

David and Diane

Monday, November 5, 2007 9:00 PM CST

Hello Friends and Family,

The Adamson clan is back in New York for Emily’s scans, and while the visit has its fair share of anxiety, we are staying positive, and keeping this an enjoyable visit.

We got in on Sunday and settled into our room, and there wasn’t much time for fun that day. However, Monday, we went to the hospital just to get our supplies for the upcoming scans, and they were so busy, they asked us to come back later, around 3:00 or 4:00 p.m.

So we went down to Times Square to wander around in Toys-R-Us, the Hershey’s Store, the M & M’s Store, and much more. After all that and a big lunch, we headed back to Sloan Kettering for a hopeful pickup of our essentials, and after a bit of waiting, our mission was accomplished. For those of you that know, shame on us for going into that jungle on a Monday when we didn’t have an appointment, and expecting to be seen. But we got out with what we came for and that was fine, so we are on our way to start tomorrow.

On the home front, we have been doing the usual. Last Sunday, we all walked in a walk for the Gold Coast Down’s syndrome organization for our little Buddy Chad (pictures on the photo page to follow), and the girls had a ball. Later in the week of course there was Halloween, but it was preceded by storms from Tropical Storm Noel, and we had a very small turnout, and are stuck with all this candy….what are we going to do?!?

Just prior to our arrival on Sunday was the New York City Marathon, and in fact the streets were still closed when we got here. This event means a lot to us because not only does the race route go right in front of Sloan Kettering in the 26 mile course, but 2 of Emily’s doctors here run in the race year after year to raise money for pediatric cancer research.

Congratulations to Doctors Kushner and Kramer for their finish in this annual monumental event, and their tireless efforts to support the need for continuous research of pediatric cancer in a search for a cure. In addition to working in the field, they feel so compelled to carry their concern over into their personal time to find an end to this disease.

Tomorrow, we start what is always, the ever so scary series of scans. Even though we go into this with a positive attitude, and trust that Emily’s good health and blood work are indicative of her overall state of health, we always remain cautiously optimistic. And to be honest, that is all we can do…except for pray. While we pray all the time, it seems to get a little more emphasis around these times, and we just carry faith into these exam rooms like a sword.

So we just ask that all of you think of this the same way, and join us in praying for Emily and all the children here and around the world fighting this disease. We ask for health for all children, and a peaceful time ahead of us.

Until later, Good Night and God Bless,

David and Diane

Sunday, October 14, 2007 8:37 PM CDT

Hello Friends and Family,

It’s been a while since the last update, but fact is, nothing has really changed. Emily completed her last round of chemotherapy without incident, and it was wonderful. While I don’t imagine many people refer to chemo as “wonderful”, since it has become a part of Emily’s life, we are able to discern between good and bad cycles. When she can go through a round with no nausea, no diarrhea, no loss of appetite, and no trauma…we chalk that up as a wonderful round.

Speaking of chemotherapy, we begin again tomorrow and we are anticipating the same outcome. Once she has completed this week, she has another two week rest, and just when it’s time to start the next cycle, we are scheduled to go to New York. So that one will be delayed until we get news from the good doctors, and some direction as to where Emily’s treatment is going to go from there.

A couple of weeks ago, Mommy decided to lop off her locks for the charity organization, “Locks for Love”. She grew her hair out exceptionally long so she could meet the requirements for donating, and then went in for the cut. Even though Emily never had concerns about her hair (mostly because she had just turned three years old at diagnosis), we know that there are hundreds, if not thousands of girls who find their hair loss most upsetting. Diane felt if her single passive effort would help even one little girl, it was all worth while, and considering the heat down here, it was a probably a comfort to shed all that hair. Besides, her hair grows by the hour, and she’s got lots to spare.

Also, all of the fathers who rode in the bicycle rally across the country completed their ride and a message was delivered to congress about the need for funding for research for pediatric cancer. In fact, Emily’s primary doctor in New York rode the last several miles in Washington D.C. in solidarity for the cause and made a presence with the parents. To read about the journey, go to www.loneliestroad.org and you can donate there as well.

We don’t know how long we are going to remain in treatment, but with Emily’s two recurrences, it’s just as scary to be off treatment as it is to continue on chemo. The frightening part is the fact that we have no concrete game plan going forward. We have no guarantees of what will work, or what will not. Even the fact that we eliminated one of her chemo drugs (the Temazolamide) instills a bit of fear about the unknown. This drug, along with Irinotecan has kept the disease at bay for months at a time, and the idea we stopped one, gives a great deal of anxiety as we approach scan time in November.

So, needless to say, we are looking for some innovative approaches to Emily’s treatment, or at least some ideas as to how we are going to move forward. Of course conventional thinking says, “You can’t stay on chemo forever”, but on the other hand, we don’t know what the other option is. Therefore, we sit and wait, and pray for the answers.

We ask prayers for the children and families who aren’t as fortunate as us, who have no options for treatment, and we remain thankful for the opportunities we have been afforded regarding Emily’s health to date. We just continue to look forward and with God’s grace, a complete healing.

So until later,

Good Night and God Bless,

David and Diane

Sunday, September 23, 2007 8:31 PM CDT

Hello Friends and Family,

No news is good news, and there has been nothing new. Life has consisted of school, play, and an occasional trip to see “High School Musical, The Ice Tour” (actually, just one trip). It was “AWESOME”, as Emily and MaryGrace say,…..if it is in your community soon, go see it.

Tomorrow, Emily starts her next round of chemo and this time it will be just the Irinotecan infusion without the Temazolamide. The side effects were becoming too much to bear,(she has a psychological problem with swallowing those pills, and although she takes pills every day, the Temador was causing a lot of stress in her life) and we got the okay to move forward with just the Irinotecan for these next few rounds, and we go to New York the first week of November for her next checkup. So, until then, this is the protocol.

Two big issues are at hand, and we would like to address both of them. First, the restaurant chain “Chili’s” is recognizing childhood cancer awareness month by having fundraising opportunities all month long in their restaurants (even though the month is almost over). The crescendo of these efforts is tomorrow, September 24th, when Chili’s will donate 100 percent their profits nationwide that day to St. Jude’s Children’s Hospital for pediatric cancer research. While Emily has never been a patient of St. Jude’s, we feel that research is research, and all that helps children there will help cancer kids everywhere.
Second, please keep in mind the Loneliest Road campaign, and all the good they are doing to raise money for Memorial Sloan Kettering’s Neuroblastoma program. The link to look up how far the guys have gotten, and their fundraising efforts to date, are at Loneliest Road.

We just ask peace for the families of all the children we have lost recently, and strength for those who continue to fight. So until later,

Good Night and God Bless,

David and Diane

Sunday, September 23, 2007 8:27 PM CDT

Hello Friends and Family,

No news is good news, and there has been nothing new. Life has consisted of school, play, and an occasional trip to see “High School Musical, The Ice Tour” (actually, just one trip). It was “AWESOME”, as Emily and MaryGrace say,…..if it is in your community soon, go see it.

Tomorrow, Emily starts her next round of chemo and this time it will be just the Irinotecan infusion without the Temazolamide. The side effects were becoming too much to bear,(she has a psychological problem with swallowing those pills, and although she takes pills every day, the Temador was causing a lot of stress in her life) and we got the okay to move forward with just the Irinotecan for these next few rounds, and we go to New York the first week of November for her next checkup. So, until then, this is the protocol.

Two big issues are at hand, and we would like to address both of them. First, the restaurant chain “Chili’s” is recognizing childhood cancer awareness month by having fundraising opportunities all month long in their restaurants (even though the month is almost over). The crescendo of these efforts is tomorrow, September 24th, when Chili’s will donate 100% of their profits nationwide that day to St. Jude’s Children’s Hospital for pediatric cancer research. While Emily has never been a patient of St. Jude’s, we feel that research is research, and all that helps children there will help cancer kids everywhere.
Second, please keep in mind the Loneliest Road campaign, and all the good they are doing to raise money for Memorial Sloan Kettering’s Neuroblastoma program. The link to look up how far the guys have gotten, and their fundraising efforts to date, are at Loneliest Road.

We just ask peace for the families of all the children we have lost recently, and strength for those who continue to fight. So until later,

Good Night and God Bless,

David and Diane

Sunday, September 23, 2007 8:13 PM CDT

Hello Friends and Family,

No news is good news, and there has been nothing new. Life has consisted of school, play, and an occasional trip to see “High School Musical, The Ice Tour” (actually, just one trip). It was “AWESOME”, as Emily and MaryGrace say,…..if it is in your community soon, go see it.

Tomorrow, Emily starts her next round of chemo and this time it will be just the Irinotecan infusion without the Temazolamide. The side effects were becoming too much to bear,(she has a psychological problem with swallowing those pills, and although she takes pills every day, the Temador was causing a lot of stress in her life) and we got the okay to move forward with just the Irinotecan for these next few rounds, and we go to New York the first week of November for her next checkup. So, until then, this is the protocol.

Two big issues are at hand, and we would like to address both of them. First, the restaurant chain “Chili’s” is recognizing childhood cancer awareness month by having fundraising opportunities all month long in their restaurants (even though the month is almost over). The crescendo of these efforts is tomorrow, September 24th, when Chili’s will donate 100f their profits nationwide that day to St. Jude’s Children’s Hospital for pediatric cancer research. While Emily has never been a patient of St. Jude’s, we feel that research is research, and all that helps children there will help cancer kids everywhere.
Second, please keep in mind the Loneliest Road campaign, and all the good they are doing to raise money for Memorial Sloan Kettering’s Neuroblastoma program. The link to look up how far the guys have gotten, and their fundraising efforts to date, are at Loneliest Road

We just ask peace for the families of all the children we have lost recently, and strength for those who continue to fight. So until later,

Good Night and God Bless,

David and Diane

Sunday, September 16, 2007 10:51 PM CDT

Hello Friends and Family,

Many apologies for the delay in updates, but the fact is, not much has changed.

The girls started school and are very happy in their new environments. School is a welcome change to sitting home, and even with the private tutor they had over the summer, it’s no comparison to the social interaction of school.

Emily has completed yet another round of chemotherapy and is currently in her “2nd week off” and is due to start another cycle next week. We are thankful for the breaks in between, and just look forward to her tolerating each cycle as well as the last.

We are scheduled to go to New York in November for her next round of scans, and God willing, we will get some good news and some new insights as to her long term plan for fighting Neuroblastoma. Since we don’t know what the future holds, and the treatments are different from child to child, we just pray for good scan results and new outcomes for the doctors researching this disease.

There is an incredible fundraising effort going on right now by 7 (seven) fathers of children with Neuroblastoma who have taken on the task of cycling ( bicycles that is ) across the country from California to Washington D.C. to raise awareness for pediatric cancer, namely Neuroblastoma and raise money for research to combat this disease. The first two days into the ride, the fathers had exceeded the $ 100k mark, and are looking to make so much more to save their children and to provide research dollars to help so many more children to come.
Since the government is not earmarking much money for pediatric cancer research, private citizens affected by this monster have decided to take this cause on by themselves, and expedite research for an eventual cure. For the full information on this fundraiser you can read about it on the website Loneliest Road


There are so many children that are affected by this disease and research is all we have to hope for. We can only pray that technology and the good nature of the people around us will press forward to seek out a cure or at least a treatment and find out what it is that is taking our kids away from us.

In this day and age of modern medicine, living in the richest nation in the world, it is saddening that we still face this ugly dilemma every day. While not everyone faces it, those of us that do, know the intense gravity of pediatric cancer, and the consequences of it.

Moreover, for those of us who live in this world, and know how difficult this is, we move on day by day, and we are thankful for the little things, and look forward to the next round of “good scans”.

So as of today, we are thankful for Emily’s appetite, her relationship with her sister and her parents, and the fact she is trusting of all her doctors and nurses, and is ready to take on the next round…whatever that may be. That unconditional trust has gotten us this far and is the motivation that takes us to the next round, again and again.

We request many prayers for the other children fighting right now, and we just ask they be afforded health and comfort for all of them. We know they fight and we beg peace for them, as they travel their own journeys. So until later,

Good Night and God Bless,

David and Diane

Monday, August 20, 2007 8:40 PM CDT

Hello All,

Today is the first day of school, and after this long summer, we think the girls are ready.

We headed off to school, and met with the teachers (after the open house last Friday) and within minutes after 8:00 a.m., we were kindly asked to go about our day and we left.

Fact is, the girls were fine but we were anxious about the new school year, and for no reason. The teachers are great, and Emily's teacher knew her whole story before we arrived, saving us a lot of explaining. I guess the fact that she is seated directly next to the principal's daughter in the same class couldn't hurt either.

The day went off without a hitch, and the girls loved their day at school. You will notice their tops,.....they are "Official High School Musical" garments....We are majorly into the HSM, and HSM stuff, and they both love TROY. Daddy just shakes his head.....it's a girl thing.

Loving a "normal" 7 year old life!

Good night and God Bless,
David and Diane

Wednesday, August 8, 2007 8:47 PM CDT

Hello Friends and Family,

First and foremost….Emily’s bone marrows, urine, CT, and MIBG are NEGATIVE!! Praise God for such a moment of complete thankfulness!! We stand in awe, we are thankful beyond words. We have faced so much bad news in these last few weeks with so many kids, that our news of Emily, are words of thanks.

Well, we are back at home now, and Mommy and Daddy need a rest. First the trip to New York (and all the emotional drain that comes with that), then 1 day later, a fun filled trip to the Nickelodeon Hotel in Orlando for 3 days, is enough to wear out the most seasoned traveler. But, the girls enjoyed it and that’s all that matters….right ?!? We all returned home with “prune” fingers, and chlorine irritated eyes. All were happy, and we (the parents!!) were ready to return to work!....(Is that supposed to be how a vacation ends???)

Now we are in planning mode and getting all of the last minute things out of the way before school starts August 20th, mostly doctor appointments. Emily was fitted with new ear molds for her hearing aids, and tested accordingly so she has optimal hearing for the upcoming school year. Then, they are going to the “regular” pediatrician for the once over before starting school, (and a new pediatrician at that) and we will have to explain Emily’s lack of immunization records once again. It is very difficult to get across to doctors that chemotherapy kills any previous immunizations, and even though they are the medical professionals, it’s always an explanation just the same.

We remain hopeful that the NB Vaccine will be available soon……and got word in NY that it may be as early as Sept. Emily remains on her maintenance chemo of Irino/Temador. She will get her 1 hour infusion after school, for at least 3 more rounds, until we return to NY again next November. Emily is a trendsetter, starting her 18th round, on Monday. Please pray that this chemo continues to do the job, and keep her body free of cancer.

Special prayers for our NB friends in need James, Grace, Chloe, Nick, Lillie, and Nathan’s family.

Good Night and God Bless,
David and Diane


PS- For The anonymous person (Lisa) who has signed our guest book several times, but doesn’t know us, or Emily and MaryGrace…..and has a problem with twins dressing alike or in similar clothing…….you should meet our girls!!...... They are VERY individual, have very different likes, dislikes, and different needs, but LOVE to dress alike. I give them a choice, and their choice is to dress alike (or similar). They actually get upset if they are not wearing the same. In this world we live in (cancer) I actually think their clothing is a very small priority. If this gives either of them confidence, as they have been dealing with this since age 3, I say “Go Girls”! As my doctor told me when I was pregnant….Twins are special,….. period…the end!

Thursday, August 2, 2007 8:21 AM CDT

Hello Friends and Family,

We are packing to go home and could not be happier with this visit.

We got all of Emily's results yesterday and she is being sent home with a clean bill of health. Her CT scan was clear, and her nuclear medicine scan (MIBG) was also clear, and so we can say it out loud now. Emily is free of disease! The bone marrow biopsies/aspirates won't be in until next week, as well as the urine tests, but the doctor said he expects no abnormalities there considering how clean everything else is.

This means a lot for us on a few levels, not the least of which is the fact that this is Emily's first set of scans since the relapse in April. It is also good to know that this chemotherapy protocol is keeping the cancer away. In fact it kept the cancer away for a year before (during all of 2006) and it only returned when we stopped.

So once again, the doctor gave us some options, and technically speaking, we could do nothing since Emily is disease free. However, knowing her history and the aggressive nature of this disease, we wouldn't even think of doing nothing. We also discussed some variations on her current chemo regimen, but for now, we are going to stay on the path that we know works until there is a breakthrough this fall (pray, pray, and pray).

The other families we are friends with here rejoiced in our news saying "with all the bad news here, it is so great to finally here a success story". It really gives other families hope when they hear of kids that are doing better, especially after two relapses. It gives more encouragement than anything a doctor or social worker could say, because these stories are real. The see Emily playing, they see us awaiting results while trying to muster a continuous smile, and they relate because they have all been there. For that we are glad to be the purveyors of good news and deliverers of hope to all the families here, no matter the state of treatment they are in.

As we travel home today, we give thanks for the great news and God's healing over Emily. We ask for the same healing for all the little children fighting right now including Grace, Zachary, Chloe, Hannah, Nick, Sydney, Lillie and so many more. Please pray for all of them even if not by name just ask for healing and a cure one day soon.

Until later, Good Day and God Bless,

David and Diane

Sunday, July 29, 2007 9:18 AM CDT

Hello All,

This will be our shortest update yet.

We are off to the airport (and as always, we're late) and this will be our last visit to New York before the girls start back to school.

So obviously we are praying for clear scans and no complications so Emily can begin second grade with her sister and rejoin the "normal" childhood she was starting to enjoy before her April relapse.

Please pray along with us for Emily's good health and results, and also please keep in mind all of the other children battling this disease as well.

Unitl later,

Good Day and God Bless,

David and Diane

Sunday, July 22, 2007 7:56 PM CDT

Hello All,

We are happy to say that the Emily and MaryGrace’s birthday week was a great time, and at some point I guess we have to stop calling them “our babies” and start referring to them as little girls now, or even, young ladies.

Emily completed another round of chemotherapy this week and did wonderfully. While this is her 17th round of the Irino / Tmz, she did not exhibit any of the usual side effects this time around, but she does not like the swallowing the Temador and it is getting harder and harder to keep it down. We feel it may be psychological as she is so accustomed to being nauseous during these rounds that she just associates the pills with being sick. This is why we are looking forward to this next trip to New York with such anticipation.

We are flying up to NY on next Sunday, to do Emily’s quarterly scans, and to find out where we go from here. Even though she isn’t on a heavy duty regimen for chemotherapy, we are afraid to “do nothing” because this disease seems to keep creeping back up. As we have said before, there are dangers in continuing the chemotherapy, but as we have seen this past year, there are dangers in stopping too. How are parents supposed to balance this conundrum, when even the doctors don’t know what the next step is going to be?

Our doctors here at home are curious what the next step is, and since there are no real hard and fast answers to treatment, we have to enter into every phase of treatment with acceptance, optimism, and faith. We have all of those, but you can’t blame us for wanting to feel like we are moving forward and not just doing “maintenance” in regards to Emily’s healing. Now is a hopeful time, in that we are looking forward to clear scans in New York. It is also an apprehensive time as we are facing our first set of scans since Emily’s relapse, and adverse news would be crushing right now, after all she has been through since April.

Meanwhile, we go back to our mantra…accept each and every day as a gift, so rather than worry; we will do our best to entertain the girls, and keep them happy and secure. It is their summer break, and it will soon be over, so let’s make it the most fun we can. We go on our family vacation when we return from NY, Emily and MaryGrace’s choice…..3 days at the Nickelodeon Hotel in Orlando (lots of sliming guaranteed!! , for those of you familiar with Nickelodeon!!)

We do ask for prayers for Emily and ALL of the children caught up in this disease right now, and trust that the great physician will heal them all. Special thoughts for our friends Nick, James, Nathan, Lillie, please pray for them as they face very difficult times right now.

So until later,

Good Night and God Bless,

David and Diane

Wednesday, July 11, 2007 8:52 AM CDT

Dear Friends and Family,

It was right about this time seven years ago today that our two little bundles of joy came into our life. Today is a happy day.

While we have been burdened with some very ugly things during Emily’s journey, we now probably have a greater appreciation for the two of them, and life in general. Every day is so precious to us, every sunrise, laugh, funny face or difficult question is just more and more adorable as time goes on. Even at this age of seven, you can still find yourself content with just staring at them as they sleep, just as we did when they were newborns.

They are a little bigger now, a little smarter, have a lot more questions, and don’t settle for “because I said so…” any more, but they are still our babies, and always will be.

Emily starts another round of chemotherapy on Monday, and will go for five days and we are hoping for little or no nausea this time. Last cycle she had a little more difficult time of it, but after 16 rounds, who can blame her for getting queasy at the thought of it. After that is complete, we prepare for our trip to New York and will have her first set of scans since this last relapse… and we pray they’re clean.

Mommy is off with the girls to the Miami Seaquarium and it’s bound to be a fun birthday. So until later, we just ask prayers for Emily’s continuing health as well as all of the little children fighting this disease.

Good Day and God Bless,

David and Diane

P.S. - Happy Birthday Girls !

Sunday, July 1, 2007 8:56 PM CDT

Hello Friends and Family,

Again, nothing too eventful these past weeks, but we are compelled to update because it has been so long since the last one. It seems easier to have a lot to say when life is full of strife and problems, but when things are “normal” you get caught up in life and the updates become more infrequent. I suppose it is a result of not having that need to vent problems and get things off of your chest. So now, we will address Emily’s state of being without stress, or problems, and just update things as they are in her life.

Emily has completed another week of chemotherapy and that went as well as could be expected. Very mild nausea and the other side effects were minimal as well. She has had a week off, and is scheduled to begin another round next week. Problem is, that is the girls’ birthday week, and there are people coming in from out of town and Diane is taking off of work to have an event filled week for them. So we will be seeking permission from the doctors to delay her next round of chemo a week to allow her to “be a kid”. While we know how important her treatment is, we also know there is an issue of “quality of life” that also has to be considered. To some people, quality of life means a lot more than a birthday party, or family visiting, but to us right now, these things are quite relevant. With all of the holidays and events that Emily has missed over the past four years, we don’t feel bad asking for this week of delay. In fact we feel Emily has earned it.

The girls have tutoring here at home twice a week and they enjoy it quite a bit, and that is keeping them sharp for the upcoming school year. They both scored on their state required aptitude tests a grade that moves them up to next year, but we want Emily to be caught up on all that she missed while in New York for her treatment this past spring. As for MaryGrace, she just gets a bonus refresher, and the fact she likes school so much just makes it that much easier.

We are trying to schedule our next visit to New York, and even though we have the plane flights booked, now we have a problem getting the scans scheduled. We have never had this happen in the 3 years we have been doing this, but suddenly we can’t get appointments, even though we are calling almost a month in advance. I am sure it will get worked out, but as for now, it is a little tense knowing we can’t get firm appointments. Everyone you talk to feels that the airlines will work with you on scheduling changes and breaks on the flight fares but the fact is they will help on nothing, and if you can’t make the flight, the consequential arrangements may cost you double what the original tickets were. We have always booked our flights then called for our scan schedule, but I guess they (Memorial Sloan Kettering) are getting busier and busier, and now it’s not that easy. We may actually get to a point that we schedule the scans, then the flights, regardless of the costs at the time of booking.

Then we get to the issue of the scans themselves. This will be the first series of scans since Emily’s second relapse, and we approach them with great apprehension. I, on one hand, fear the unknown, whereas Diane feels very confident in the fact that Emily has been getting treatment ever since the relapse was discovered and if there was ever a “good” series of scans to be had, it would be these. More often than not, Diane is the rational one and I am the worrier, and I welcome every opportunity for her to be the one that is right.

We are looking forward to going to New York and finding out the latest research developments, and potential treatment options that don’t involve hair loss and vomiting, but until they become available, we continue on this path. I will say that the vaccine is somewhere out there on the horizon, but since we haven’t gotten the call from New York, it remains just there…on the horizon.

We pray for healing for Emily and all the children fighting this fight, and hope for the best, but would like to know we are working toward an eventual goal. Our faith, in addition to God the Ultimate Physician, lies in the doctors and researchers who do this day to day, and who have pledged their careers and life to finding a cure for all of our children. Until later,

Good Night and God Bless,

David and Diane

Monday, June 11, 2007 9:52 PM CDT

Hello Friends and Family,

Nothing too eventful this week, but a good time just the same. The girls had a week of Vacation Bible School and they enjoyed it quite a bit, and the week ended with a big production by the class during Sunday services. It was great to see them so interested and happy to learn. They are now experts in the stories of creation, Noah, Joseph, Jonah, and Daniel.

This week started with a wonderful bit of good news. The great folks at Harbour Towne Marina came through for us once again, and their Annual St. Patty’s Day Fishing Tournament was to benefit Emily’s Medical Trust this year. Today they awarded Emily with the funds raised from the tournament, and it was a beautiful time. It was a strange twist of events, because the tournament was just days before we got the news of Emily’s relapse, and heaven knows we are going to have a lot of medical expenses once the vaccine therapy becomes available. We are so thankful for such a wonderful group of people that have been unbelievably generous to our family.

We would like to use this page to thank all of the people at Harbour Towne Marina including Michelle, Louise, Gary, and all the staff & organizers, and of course all of the sponsors and anglers who made this possible. Those who are not in this world of pediatric cancer probably cannot understand the added stress that comes from having to travel out of town for treatment. It is a layered stress that involves the feelings of the cancer itself, the dreaded fear of relapse (which has since been realized), the social issues of missing school, the sibling(s), and then “where are we going to get the money to travel for this treatment?” We are so thankful, beyond words. Thank you, Harbour Towne!

So tonight we are once again humbled and thankful for all the blessings that we have been provided and just ask that prayers allow other children to have healing as we face this monster that is cancer. Until later,

Good Night and God Bless,

David and Diane

Tuesday, May 29, 2007 9:19 PM CDT

Hello Friends and Family,

After a little more than a week home, we are trying to settle in to a normal routine, or at least as normal as it gets in this world.

We got home fine, and got the girls ready for the back to school shock, Emily after six weeks, and MaryGrace after only missing a week. They adapted immediately, and since our doctors opted to give Emily a week extra to recuperate, it was nice for her to be able to go back to school before resuming the chemotherapy regimen.

After the week of “regular” school, we had a Memorial Day weekend of observance, religion, and fun, and we squeezed what seemed to be many weeks worth of fun into one long weekend.

This week began on Memorial Day with a day in the hospital for Emily to get her first day of chemotherapy for this cycle. The rest of this week she will get her treatments in the outpatient clinic of the hospital and we are hoping for a “non-eventful” round.

This is the last week of school for the girls, so we are happy that Emily is home to see her year-long friends from first grade and take in the festivities that are always part of the last days of school.

We are glad to be home and able to get back to a routine, and we look forward to a happy summer for everyone. We continue to ask that you pray for all the children fighting this fight, including Emily, and with that strength we will continue the battle ourselves. Until Later,

Good Night and God Bless,

David and Diane

Saturday, May 19, 2007 10:22 AM CDT

Hello Friends and Family,

In just a few hours, this trip will be over…and none too soon!

Ever since the first news of Emily’s relapse back in April after scans, we braced for what we were sure would be another long stay in New York, and that proved to be the case. However, we accomplished a good deal during this trip, not the least of which was beating back this Neuroblastoma monster once again.

Probably the most rewarding part of treatment this time was the fact we were able to harvest Emily’s stem cells for storage and use should she ever need them in the future. The thought of not having any cells on reserve for her was as scary as the thought of relapse itself, and while their use would only be in a very drastic situation, we have great peace of mind knowing, “at least we have them now”.

Her final tally was a whopping 4.4 million stem cells, and loosely figuring, that’s enough “rescue cells” for recovery from two separate high-dose treatments in the event of a widespread relapse. This number was especially impressive to our doctor here who told us she would most likely produce none due to her stage in treatment. There was no ego problem when little Emily proved him wrong, in fact, he was quite excited about it, and who knows, maybe they will begin to rethink who is able to harvest stem cells due to her beating the odds. The doctors here have often said that they are “learning” things from Emily because she is a very different case in some ways, and this may be just one more example of that.

We finished her harvest Thursday, and she had an awful allergic reaction to the blood used to prime the lines. Midway through the harvest they had to stop the machine and start infusing Benadryl IV and when that didn’t work they went for Hydrocortisone IV and after about 30 minutes of screaming and wild breakouts over her whole body, Emily finally got relief. The doctor there said “well, I can’t take the blood out (meaning the blood that she got that caused the reaction), so we may as well keep going and get our cells”, and that she did. With all of the drugs on board, Emily fell asleep, and had a peaceful nap for the remainder of the treatment. That last day yielded only 700,000 cells and all of the doctors agreed, we were done. In addition to the low cell count, she began having pretty severe joint pain from the cell boosting injections, so overall; her little body just had enough.

After all this, we figured they would pull out her groin IV line , watch her a bit and send us home, but no such luck. It seems that the anti-clotting agent (Heparin) they use to keep the blood flowing through the machine during the harvest process was in Emily’s blood making it too thin for her to safely have the line removed by the surgeon. On top of that, after 3 days of harvesting also harvested her platelets (needed for clotting) and they dropped down to 39 from over 200 before we started this process. So, all of these combined factors led to a decision to keep us in the hospital another day. She got two platelet transfusions, we spent another night, and first thing Friday morning, the surgeon came in, said she looked great, her blood was back to normal and he was taking out the line.

After we were sprung from our inpatient stay, we waited to meet with the doctor before we left, and he had very little to say. So, we are going home to begin Emily’s low dose chemotherapy regimen which will be the same she got for her last relapse, one week on, two weeks off. After 3 cycles, we will return to New York for another round of scans and maybe by then, start the vaccine…but we aren’t holding our breath on that one. There have been so many delays for the vaccine that now, it’s just something we hope for but cannot really bank on as a treatment plan right now.

So, our next update will be from sunny South Florida, and while we love New York, there’s no place like home. Please pray for Emily and all the little children fighting this fight, and especially for the family of Penelope who lost her fight to Neuroblastoma this morning after a great deal of suffering. Until later,

Good Day and God Bless,

David and Diane

Tuesday, May 15, 2007 11:39 PM CDT

Hello All,

The weekend is over, Mother’s Day was wonderful, and our family is together here in New York, but what a change of events in the past 24 hours.

Yesterday Emily was tested again for her body’s ability to produce stem cells and at the end of the day, we got the news…her results were a 0.1 and the wheels were put in motion to get her in to harvest those cells.

This process involved beginning the day with surgery to place a line for the removal and re-infusion of her blood. This was complicated because Emily has her central line (Medi-Port) in one side of her chest, and on the other side, she just had surgery that affected all of the veins/arteries in the area that the new line would go into. So, the surgeon said the best move was to place a femoral (groin line) catheter.

Okay, so medically, that was resolved in less than five minutes, but now came explaining it to Emily. The night before we went through the stem cell harvesting process, and she was on board with collecting as many “super cells” as possible, but we never expected to encounter a line in her leg. Oddly enough, she accepted it immediately, and things were underway.

The surgery went off without a hitch, and once she recovered, it was down to the blood donor room where all the machines are that do the stem cell harvests. It is a three hour process, so Mommy & Daddy had a long sit, but Emily had TV and her parents’ full attention, so she was fine. Afterward, we went back up to the Day Hospital and awaited our next move.

Now the good news… Today’s collection yielded 2.6 million cells! This is a great result, and everyone involved was happy for us. Then the other shoe fell. Because of the type of line Emily had put in, the surgeon required that we be admitted to the hospital to stay the night, and none of us were planning on that. Of course, there is a risk in having a line that size in place, and the surgeon is being conservative and protecting Emily, so as of tonight she and Mommy are at Sloan Kettering, and MaryGrace and Daddy are back at the Ronald McDonald House. Tomorrow night, we will switch, and do this until they have collected enough stem cells for Emily.

So needless to say it has been a long day, and we are all exhausted. So we pray for a good result with tomorrow’s harvest and hopefully the completion of this whole process at the same time. If not, we will do it again Thursday, and rejoice in the fact we now will have the much needed stem cells for Emily should she ever need them in the future. So until later,

Good Night and God Bless,

David and Diane Adamson

Saturday, May 12, 2007 6:45 AM CDT

Hello Friends and Family,

Another week of milestones has come to an end.

On Wednesday Emily completed her 20th round of radiation, and this leg of treatment for her relapse is finished. We will most likely be going home to a similar low-dose chemo regimen to be administered at Joe DiMaggio Children’s Hospital for at least two more cycles while the doctors try to determine the best plan of treatment going forward. By the time Emily will have gotten these two additional cycles, we will pretty much be on schedule for our three-month scans, and I think they will make a final determination as to her treatment going forward. The radiation did cause her some mild irritation to the side and back of her neck, but the biggest source of discomfort for her now is her persistent sore throat. Because her esophagus was in the field of radiation, within 3 days of her completion, the irritation had set in. The radiation oncologist told us this would happen, and in fact told Emily that she was going to give Mommy and Daddy a prescription for “All the ice cream you want, anytime you want”. Sure, that makes the doctor a hero, but where is the doctor when we are trying to make Emily eat breakfast, and she is shaking her finger saying “remember what the doctor said Daddy, I need ice cream”. Hey, when Emily is in treatment, the USDA food pyramid goes out the window.

Speaking of radiation on a lighter note, I just wanted to mention something that happened this past week. The day after we completed her 20th round, my phone rang about 8:30 a.m. and it was the radiation department. For a split second, my mind raced wondering why they would be calling us. Was there a mistake? Do they need to do more? So I calmed down long enough to answer the call and the young lady on the phone told me that there was a present for Emily at the check-in desk. Whoever had brought it thought today was her last day, and just missed Emily, but left the gift anyway. When we got to radiation later that morning, the gift came with quite a story. It seems that there was an adult patient in radiation the same time as Emily, and she would see Emily bolt through the door leaving Dad behind to do the check in. She would run all the way to the back of the department and tell the technician, “I’m here, are you ready yet?” and whatever time remained before her slot was open, would be broadcast to everyone in the room who would listen. She would exclaim, “Okay, I can only play for 5 minutes because I have to get my radiation” so everyone within shouting distance knew when Emily was going in. Well, this adult patient looked at her (all of this unbeknownst to us) every day as she sat in the adult waiting area in a gown, waiting to be called back herself. According to the deliverer of the gift this is what she said. “Every day I see that beaming little girl who should be terrified of all these big machines, and she runs around here so happy”, she continued “there are days I don’t even want to come to radiation, but Emily gave me the inspiration to come here and complete my treatment”. She incidentally finished the same day as Emily, and was so moved by her presence she brought her a stuffed animal as a Thank you for putting things in perspective. She gave no note, no name, and no way for us to say Thank you ourselves. I tried to get it from the girl at the check in, but hospital privacy is a big issue these days, and there was nothing doing. So we just know that somewhere out there is a life that was made just a little better, even if just for a few minutes a day during a tough time.

The final aspect of our stay here is the possibility of collecting stem cells from Emily. The doctors said the best time to attempt it is 2 weeks after a cycle of chemo. That is when the body is most beaten down, and producing stem cells. In addition, we are injecting a cell building booster (GCSF) to help the process in hopes of retrieving what could be a life saving tool if treatment ever became more severe. We began the injections Thursday a.m., and when Emily had her blood tested Friday a.m., her white blood cell count had jumped from 3.6 to 19.3, and that was before she even got her second injection! So after the doctors saw this, they said don’t go anywhere, we need to draw blood from Emily right away and get it down to the lab to see if there is a stem cell count. However, last evening we were informed that the result was 0.0 and there was nothing to work with. The doctor hasn’t given up hope because he recognizes the importance of having these cells in reserve as well as how concerned we are in getting them. So, we will continue the injections over the weekend, and Monday draw again. But, we were told if that test is not at least a 0.1, there is no more to do. If that is the case, we will take it as God’s will and move on with treatment without the cells, and we will cross that bridge when we come to it…if we come to it.

Diane and MaryGrace will be here in just a few hours, and everyone involved is excited. The girls have not seen each other in over a month, and we may have to leave the room for a bit while the two of them try to explain their past month at a million miles an hour, each getting louder as they talk and waving their hands to be more expressive. And of course the idea that my sweetie will be here for Mother’s Day is a treat for both of us as well.

I have met a lot of families here this visit, more than in any time in the past, and there has been a lot of bad news to go around. It is tough to keep that cheery attitude in the face of so much despair, but I have noticed that the well adjusted families sort of handle things like we do. You get punched in the stomach with bad news, you catch your breath and ask what the treatment plan is, you wait a couple days and ask a million questions of the doctors, and with a stiff upper lip you explain it all to your child and begin the next battle. Sounds pretty cut & dry when you write it down, but it’s never this simplistic.

We would also like to say Thanks to all of you who have sent cards and letters and gifts to Emily. Going to the mailbox is the highlight of her day, and even a postcard with a funny animal on the front makes her day, so again Thank you.

Well, I am off to get ready for Mommy & Sister’s arrival. We have a big weekend in store since Emily might be getting a new line placed next week, we won’t be able to do much if she is in treatment. I ask that you continue to pray for Emily’s healing as well as all of the other kids and families here and around the country as we share in the battle against this horrible disease. So until later,

Good Day and God Bless,

David and Diane

Friday, May 4, 2007 11:24 PM CDT

Hello Friends and Family,

Another week is behind us, and it has been relatively uneventful, hence, no updates.

Emily has been getting her two-a-days in radiation, and tolerating it quite well. Last weeks chemo has been taking its toll on her blood counts, and her tummy. However, the docs feel she is doing great considering, and her side effects are managed pretty well with a few small pills. Her counts today were so good, they opted to not see her formally for an exam because there was no real cause, In fact, they said we can bring her back in Tuesday or Wednesday for a checkup, and Wednesday is her last day of radiation therapy. So this part of things is going as well as could be expected.

There have been little issues that are of concern to a parent, but may not be that big of a deal to the doctors. She has had itchiness at her surgery site, a good bit of stomach problems from the chemo, and a little achy whining here and there. Of course all of these issues come up around bedtime and mealtime, but during the day (like all day in the clinic / playroom at the hospital) they seem to disappear. So is the answer to just move in to the hospital’s playroom and she’ll be all better? If she had her way that would probably solve the problem.

There have been a few other issues with Emily lately that are not quite so one dimensional. Questions like, “If I’m getting better, why do I keep getting sick?”, or “Is my hair never going to fall out ever again?”, or even “Why can’t Mommy be here?” have come to the forefront in recent days. We have always prided ourselves on being honest with her, but some of these things are too complicated to answer at a six-year-old level. The hair issue was a big one, and being here and seeing mostly all bald children elevated her anxiety. We know that this new chemo regimen will not cause her hair to fall out, but her question was if she would “ever” lose her hair again, and that’s something we can’t shoot out an answer to right away. But are we about to get into an explanation about the percentage of relapse and the possibility of more toxic treatments in the future if the worse should happen? So the tap dancing begins.

Hopefully tomorrow she will be sidetracked with a trip to Toys-R-Us in Times Square, some toys, and chicken nuggets for lunch and forget about the intricacies of cancer. She is still at an age that you can provide diversions, but it won’t always be this way.

We have met a lot of families here on this visit, and they are in every stage of treatment from new diagnosis, to middle of treatment, to NED, to the dreaded relapse. We ask that while you keep Emily in your prayers, you also ask prayers and blessings for these kids and their families, especially Nick who after over a year of being cancer free, has just relapsed, and is facing some very innovative treatment. Also little Penelope who we have not met, but follow closely, and she is in much need of prayer as her disease progresses.

While there is no cure right now, there is treatment, and with odds that uncertain, faith and prayer are what we must lean on while we follow the doctors’ advice, and watch our children heal. So, please lift up all children with cancer and ask God’s healing hand be upon each and every one of them. Until later,

Good Night and God Bless,

David and Diane

Sunday, April 29, 2007 9:53 AM CDT

Hello Friends and Family,

Today measures a lot of little milestones for little Miss Emily.

It has been two weeks since her surgery; she has completed her first cycle of chemotherapy, and has already begun radiation which she is tolerating without as much as a whimper.

But today has another very significant event, and we always dread it…Mommy had to go home. Taking my personal feelings out of it (which is a bit silly because this web page is all about our personal feelings) there is just something very unfair about a mother having to leave her sick baby behind. Even though Emily is doing great right now, we must keep in mind the reason we are here. She has suffered a relapse of her cancer, and is in treatment and it is gut-wrenching to have to walk away from all this and hope that all goes well while living every day all the way across the country. I guess Diane has faith in Daddy, but that doesn’t diminish the melancholy in her leaving.

It is her undying faith in her husband (me) that allows her to get on that plane and go home in the midst of therapy. It has always been ironic that the mother, the nurturer, the nurse, has always had to leave her child behind while the traditional “breadwinner” has had to leave his earning position and care for that same child in most cases performing a nursing, mothering type role that she would be so much more qualified to do. It has been this way for some time, and while we have accepted our reversed roles, and even embrace them, it is this unique relationship that allows us to move forward the way we do.

Diane and I are not just husband and wife and we are not just caregivers, but true partners in Emily’s treatment, as well as every other facet of our life. This partnership allows us to take on our problems with twice the strength, knowledge, and faith that it takes to combat this disease that plagues our little Emily. On the same hand, when she is gone, it feels like a great emptiness overshadows all those other qualities I have when she is here. There is no doubt that she is the source of my strength, and with her confidence, I will to continue forward in the same manner as if we were both here, but I will miss her greatly.

We should have another 3 weeks here, and if all goes as planned, Diane will come back up with MaryGrace for the last week, and we will all be together again. The schedule will be fairly easy as Emily has radiation twice a day, and in between that time she will attend class at the hospital to keep her academic skills sharp.

Friday, as a bit of a surprise, the Ronald McDonald House gave us tickets to see Mary Poppins, and Emily loved it as much as last time, maybe more. The only drawback was that she had 2 rounds of radiation and her final round of chemotherapy that day (final round for this cycle), and with the show starting at 8:00 p.m. it got hard for her to stay awake near the end. But as of today, she is still singing the songs from the show. Yesterday, we helped Mommy pack and saw her off, and today is just rest and maybe a walk to Central Park. Then tomorrow, back to the two-a-days with radiation.

Please pray that Emily continues to tolerate the radiation well, and keep in mind all of the other children here and elsewhere who continue to fight this disease. Until later,

Good Day and God Bless,

David and Diane

P.S. - New pictures on the photo page

Tuesday, April 24, 2007 1:56 PM CDT

Hello Everyone,

Here we are, and days one and two of chemotherapy are behind us already. We started early yesterday thinking we would beat the Monday rush at Sloan Kettering, but as anyone who has been here knows, there is no beating it. I don’t care if you show up at 5:00 a.m. and wait for the doors to open in the Pediatric Day Hospital, you will get seen when you get seen, and nothing will change that. We always get a good chuckle in the waiting area, because we can always spot the new families as they angrily march up to the check-in counter and shout that they had an appointment, and it’s been over an hour. We usually wait until after lunch before we even ask if the doctor is in today, and then, we do it with a smile. You will never change Mondays at Sloan, and the sooner you can deal with that, the happier you will be.

So after a moderate amount of waiting, Emily’s blood work came back great, we saw the nurse practitioner, and chemo was to get underway, but at 10:00 a.m. it still wasn’t ready, and we had an appointment with radiation oncology at 10:30 a.m. Therefore, we opted to keep our radiation appointment and told the nurses we would come back afterward and see if they were ready. While in radiation, they set up Emily’s plan, made their marks, and gave her a new set of tattoos which was a little painful, but she withstood it great. They moved much quicker than we planned, and her setup is tomorrow and we begin the actual radiation treatments Thursday.

After all that (and promises of McDonald’s for dinner because of the tattooing incident) we headed back up to see if chemo was ready, and it was very shortly thereafter. She got her infusion, and we were done for the day, and out by around 2:00 p.m. ….not too shabby.

Today was even better, we went around 8:30 and were done by 11:00, but Emily can’t tear herself away from her class with Ms. Anne Marie, so we hung around until a little after noon just to keep her happy, and now are we glad we did.

Dr.K. caught us in the hall, and asked where we were going to be hanging out, that he needed to do something real quick, and then he wanted to “talk to us”. Normally, that would send chills down our spine, but considering the reason we are even here, what worse news could he have? Never pose that question in real life, it could always be worse, just be thankful it isn’t. In addition, he was half smiling when he said it, which would be the equivalent of gleefully jumping up and down to the rest of us. Needless to say, we didn’t move from the spot we were standing until he came back. He returned shortly to tell us that of the seven lymph nodes that were removed, only one had Neuroblastoma, and believe me, that was welcome news. Going back to the idea that you have to look for the positive in these situations, this was a lot better than hearing all seven were Neuroblastoma, and it makes this relapse even milder (if there is such a thing). As a result, he feels very good about this and that if there is any microscopic disease lurking around, the radiation is going to eliminate it. We just cling to the words he uttered when he first told us to come back right away for surgery, “this is very treatable”.

We have run into a lot of new families (with Neuroblastoma) and some old friends as well. One such friend is a little boy Christopher that Emily went through 3F8 Antibody therapy with and he is here for scans now. We probably met almost 3 years ago, and it’s funny to see all of the kids growing up. Like we have said before, nobody knows what we’re going through the way another family does that is in the same thing. We’re all part of that club that none of us wanted to join.

Tonight, we are going with a group from the Ronald McDonald house to take the NBC Experience Studio Tour. We are looking forward to taking in all the fun, and it’s early enough that it won’t interrupt the regular sleep pattern of our little sleeping beauty. During chemotherapy, she really needs to sleep to promote healing, and we try to see to it she gets a good 10 hours a day minimum, plus a nap on days we are not in the hospital.

Please pray for continued good news and healing for Emily, and please also keep in mind all of the other little children, who are fighting to beat this. Until later,

Good Day and God Bless,

David and Diane

Sunday, April 22, 2007 3:35 PM CDT

Hello Friends and Family,

This weekend has been a nice diversion from all the seriousness we have faced over the past 10 days or so. It is nice to have days with no schedule to account for, and be able to just go out and do whatever seems fun, so that’s what we did.

Saturday morning after we ate breakfast, we headed down to Penn Station, and Emily was going for a train ride. We went to Long Island to see some friends of Diane’s mom, and to visit her childhood home in Smithtown. It was a long trip, but Emily seemed to enjoy it. We visited for a couple hours, took pictures and came back on the train. Even though we did none of the driving, we came home exhausted, so it was a quiet evening inside after that.

Sunday, the weather was beautiful for a third day in a row, so it was impossible to not get up and go do something. So, we did a foot trip this time, and Emily’s chosen destination was none other than Dylan’s Candy Bar. Even though we do this for her, there is a great feeling of nostalgia when you peruse the shelves of that beautiful store and see candies and gums that you haven’t seen in 30 years (Mary Janes, Fruit Stripe Gum, Chunky, etc.), but nostalgia comes with a price. I remember as a kid coming home with a whole shopping bag full of tooth-rotting goodies costing just a portion of my $ 5.00 allowance, and now you need a second mortgage on your home to stroll down memory lane. However, when the proprietor is the daughter of the man who put a polo shirt on store shelves for over fifty dollars and insisted the public would buy it just because a designer said that’s what it costs, it stands to reason the candy would follow suit. Fact is, it’s a beautiful store that kids love, and the parents love more.

From there, we made our obligatory stop at the Disney NYC store, and took in all that is Disney. Afterward, we walked down to Central Park, and ate lunch outside. Emily had a peanut butter sandwich and we had gyros made with and undetermined meat they said was lamb, prepared by an angry foreign man with an accent who yelled when I asked for extra sauce. Isn’t America grand?!?

Now we settle in for the day, as we get ready to begin a whirlwind of a week. We will be going to the hospital at around 7:45 a.m. and try to get Emily’s chemotherapy underway, so that it will be done before our 10:30 a.m. appointment with radiation as we get that started as well. She will get chemotherapy every day, until Friday, and the radiation will begin probably next Monday and will be twice a day for ten days (not counting weekends). After all of this, we are pretty certain they will want to re-scan her before we go home, and continue chemotherapy as we did all of 2006. So it looks like another 2 ½ weeks at the Memorial Sloan Kettering Country Club.

We ran an idea by Dr. K. that he seemed to think was a good one. We may attempt to harvest stem cells from Emily’s peripheral blood supply, to have on hand in the very unfortunate event she ever has a more severe relapse and has to have a harsh therapy regimen that drains her system. For those of you who have been following Emily from the beginning may remember that she was a part of a study where her stem cells were harvested (11/03) for transplant after a very harsh chemo. Well, the study involved her stem cells being sent out to be “purged” of any Neuroblastoma and would then be transplanted back in and would regenerate healthy cells and facilitate her recovery. The problem was that the stem cells arrived at the facility in California destroyed. Mind you, their term was “the cells arrived unviable”, but they were fine when they were shipped, so we will always have our opinions on that. Fact is, it is just good measure to have additional stem cells on hand, if they are ever needed.

Tonight, we just pray for peace for Emily as she starts her treatment routine. While it is not very toxic at all, she still has a little anxiety, and we are just trying to answer all her questions, and make it a fun thing, as best we can. Thanks to all of you who continue to check on Emily, and write to her in person and in her guest book. Reading her mail and guestbook is a daily routine, and she loves it. Most of all, we would like to thank all of you who continue to pray for her, and have passed her story on to others who are also praying for her. With this prayer, faith, and encouragement, we take on the days to come with great confidence and peace. Until later,

Good Night and God Bless,

David and Diane

Saturday, April 21, 2007 8:03 AM CDT

Hello Friends and Family,

Well, we finally met with the good doctor, and the news is pretty good. He is recommending that we do the low dose chemotherapy, and then radiation to the area of this newest recurrence. Then eventually, while keeping the wolf away from the door with the chemo, we will seek out the ever evasive vaccine (hopefully this year).

We were pleased to find out that Emily won’t have to lose her hair again, and we even more happy to hear that her hair was a big consideration to the doctor in his determining the plan. We had a choice of radiation being once or twice a day, the difference being the number of days it would take to complete. So, we opted for twice a day for 10 days. The radiation will also be low-dose and using just a single beam to the site as opposed to her previous abdominal radiations that were multiple beams.

It seems that our new found philosophy on “Living with Cancer” serves us pretty well and it was funny that we had this epiphany prior to sitting with the doctor Thursday. As parents we try to determine the whys and wherefores of this disease, and all we do is frustrate ourselves. So then, we carry that concern over to our doctors and try to establish a pattern, or reason for the recurrences (recurrence sounds so much nicer than relapse), and all we do is frustrate them. But this day, that scenario would be different; thanks to the patience and insight we were granted by Dr. K.

He explained to us that Emily’s relapses were not bad as they could be, and that if you had to face a relapse, this was the one to have. Now of course by this time we are looking at him as though he has lost his mind. He went on to explain that typical Stage 4 Neuroblastoma relapse involves many other parts of the body, including bone marrow and is difficult if not impossible to effectively treat. Emily’s have not been this type, and have been very focal, and easy to treat. Then, we are left asking, “well how we can we say with any certainty that we are treating her when it keeps coming back, and how do we measure what drugs are working, when she completes them, and relapses anyway?” There are no answers or reasons. Neuroblastoma does its own thing, but the doctor reiterated that Emily’s particular recurrences are very treatable, and in both cases was caught very early.

He went on to say that Emily’s disease may just be chronic. She is NED for years, and then a scan shows something, we do surgery and some low dose chemo, and go for another few years, at least until a cure is found. It may be just a part of Emily’s life. He compared it to someone with Diabetes, a disease with no cure but a patient lives with it for life and treats it. So while a kid in her class may have Diabetes and takes insulin, Emily has Neuroblastoma and takes Temozolomide, just that simple.

Something about that comparison sent us out of the doctor’s office with a great sense of peace about our situation, and it really went right along with what we had just come to realize the day before, that we are Living with Cancer.

So, please pray for Emily’s good outcome and tolerating the chemotherapy she starts on Monday, and that radiation goes smoothly as well. Please also keep all the children who continue to fight along with her. Until later,

Good Day and God Bless,

David and Diane

Thursday, April 19, 2007 8:26 AM CDT

Hello Friends and Family,

No news yet, and to complicate things, we have been without internet service for the past day and a half. So after some do it yourself diagnostics, we are back on line. Most people may wonder why the internet has anything to do with Emily’s treatment. But if you’ve been here, you know how difficult it is to get any of the docs, and with e-mail, you are always guaranteed a response and usually a quick one. You stand a much better chance this way than by phone, I guess medicine’s changing, and we’ve got to keep up.

We meet with Dr. K today around noon, and we hope to find out what the plan is going to be. There were some ideas tossed out by one his partners the other day, but strangely enough, there are a lot of treatment options that Emily is not eligible for, because she no longer has any “measurable” disease. Because her type of relapse was limited to the actual growth that was removed, there is no disease that would be needed to pursue many of the trials out there. I guess you could say she’s NED again, but we can’t very well have a celebration right now. Hence, this conundrum is the need for our visit today.

Yesterday we went to the Swedish Cottage Marionette Theater in Central Park. We went expecting to see the typical puppet show but it was actually quite elaborate with a stage, lighting, and fully operating marionettes that were 3 – 4 feet tall and it was a full one hour presentation of Cinderella Samba, a new twist on an old story. Emily enjoyed it, even though some of the puppets were quite scary looking.

Today will decide which way we go, and how long we will be New Yorkers, so please pray for an effective, but not too toxic treatment plan for Emily. Not to be vain or selfish, but if we can get through this without Emily losing her hair again, it will certainly make things easier on her mentally. She can endure everything else from needles, to nausea, to having to lie still for great periods of time, but the hair thing is a big one.

We will update again, as soon as we know something. Please pray for Emily and all the little children who fight this fight. It is not pretty or fair, and living here, we see a lot of it, and it’s heartbreaking to say the least. Until later,

Good Day and God Bless,

David and Diane

P.S. – Anyone that wants to write to Emily, her address is below.

Sunday, April 15, 2007 10:35 PM CDT

Hello Friends and Family,

Today has been great, except for the fact the weather has not allowed us to leave our room for the past 24 hours. As you have probably already read, or seen, we are victims of the “Nor’Easter 2007” and while it does not merit the hysteria they have given it on television up here, it does make it hard to entertain a six-year-old who is cooped up all day.

Emily awoke cheery and ready to take on the day, but it was too cold and too rainy to go anywhere, not to mention she is still recovering from surgery. So between the computer, video games, coloring, and movies on DVD, she withstood a day totally indoors. While we would never go for such a thing at home, we are kind of hostages to this weather right now, so going outside is not an option.

We have spent a bit of time digesting our recent news of relapse, and have been trying to really determine how we feel about it. Of course, there is the primal series of feelings made up of “Why me (or Emily)”, or “but we did all the treatment, why is this happening again”, or questioning the doctors knowledge. Once you work past all of those initial gut reactions, then you settle in to a deeper level of reckoning with your emotions and seek out “productive” ways to deal with your questions and emotions. We wondered if we shouldn’t be more devastated than we are right now, but fact is, when we were summoned back to New York, we knew it was for a reason, and not a good one. It’s like we had a buffer between NED and relapse and we had a plane flight to deal with the feelings and formulate questions.

After thinking about it a long time, we have noticed a common thread that is woven through the cancer community right now. It started with Lance Armstrong (an obvious cancer survivor icon) and has more recently been brought to light by Mrs. Elizabeth Edwards, husband of presidential hopeful John Edwards and then again by Washington Press Secretary Tony Snow. I am certain there are many more people with this viewpoint but these are the ones that come to mind right now.

The common thread that I mentioned is the phrase “Living with Cancer”. Just a simple Google search will give you 60,500,000 results ranging from cookbooks, to medical recommendations, to homeopathic remedies for side effects. But in our life it has a much deeper meaning, and I believe it is the mantra that will get us through this and any future catastrophes.

To offset becoming upset, or saddened, or hateful about the news of a setback in cancer treatment, I think it’s important to keep in mind the nature of cancer itself, and know that we don’t have a cure, but we can do our best to treat it, and beat it back. We can’t predict it and head it off, otherwise we would. We may know some contributing factors, and take preventive measures which are smart, but no guarantee. Day after day there are people diagnosed with lung cancer who have never touched a cigarette, and people who have smoked their whole lives and never gotten anything. And what about babies, or young children diagnosed with cancer that haven’t had a chance to ingest bad food or chemicals to promote the disease? Hence, this is the reason for our mindset.

Rather than fighting something we don’t understand, something the doctors who have researched their entire careers don’t understand, and being angry about not having a cure, we adopt this new way of facing this life. The approach of “Living with Cancer” suits us, and with good reason.

In Neuroblastoma, the brass ring is to reach NED (No Evident Disease) status, and medically speaking that is a milestone, or form of measurement in treatment. But in fact, that is just a stage that you live within until something changes. Then when it changes (relapse) then you’re angry as if the doctor let you down, or you didn’t do enough to help your child. Fact is, there is no guarantee….. you are Living with Cancer, and the day you reckon with that, you know to expect whatever is down the road.

We are living with Emily’s cancer, and while we continue to pray for healing, and a cure, we know that we are in fact living with this disease and all that comes with it. As a result, we take on this week knowing we are beating back the monster, but know that it can return. However, with faith, prayer, and constant vigilance (via regular scanning and treatment) we can hopefully beat it back until they find a cure, or better more effective treatments.

Most of all, Emily is living with her cancer and of course it is a big pill to give to a six-year-old, but just look at the picture and see that she was less than 24 hours out of major surgery and laughing, and knows that we have to do what the doctors tell us.

Therefore, we pray for knowledge for the doctors, good health for Emily, minimal treatment, and a quick return home. Whatever the plan is, we know our direction, and ours is to fight for Emily, and keep her happy and secure. Please also pray for all of the little children who continue to fight this disease. Until later,

Good Night and God Bless,

David and Diane

Saturday, April 14, 2007 9:31 PM CDT

Hello Friends and Family,

Emily did good overnight, but awoke this morning in a bit of pain. We weren’t quite sure if it was pain or just stiffness in her neck because she is afraid to move it too much. So after we evaluated her (and her mood), we dosed her with children’s Tylenol. Within 30 – 45 minutes, she was walking around the room eating breakfast and having a game with Mommy showing her how fast she cold sit up in bed.

This was a big deal because it is quite a strain on her neck, and she was proud to show us it didn’t hurt. Mind you, we have an array of pain medication for her, but she made it through the day on over-the-counter Children’s Tylenol.

Originally, we had no plans to go anywhere because we were supposed to have bad weather, but it wound up being a gorgeous day today, so we went out on the town, and found a beautiful toy store that she got to pick out some special treats, and we ran some errands. After it all, Emily got a couple hours of fresh air and felt very good by this afternoon.

The only difficulty is keeping Emily in her proper sleeping position. The surgical team said that she needed to sleep at a 45 degree angle for the next 5 days, so that fluid doesn’t collect in her neck and cause severe swelling. After exhausting trips to pharmacies to find a way to do this without being in the hospital we found a foam bed wedge from a medical supply company, and it seems to be doing the trick, but she doesn’t like it.

Tomorrow will be fairly low key as well, and if Emily is up to it, we will try to visit the church down the street for a service, and get back in as soon as possible. It is supposed to get real ugly here, so much so, the mayor and the governor are on TV telling everyone to stock up on supplies for the storm. We see plenty of this in South Florida, but can’t imagine it could get that bad here, so we will keep you posted.

So, we thank everyone for the prayers, thoughts, and concerns, and just move forward in faith that this is the way to healing for Emily. We are anxious to see what the doctors have to say, but we just have to wait. In that time, we have to pray that God will send us on a path that will heal her, as we know in the Lord’s Prayer it says “thy will be done”, and we trust that this is his will. So until later,

Good Night and God Bless,

David and Diane

Friday, April 13, 2007 9:27 PM CDT

Hello Friends and Family,

Well, today is over.

The good new is the surgery was a success, and was over in about two hours from the time it began.

The bad news is, initial findings show that the mass in Emily’s neck is in fact Neuroblastoma. No more wishful thinking, and no more maybes, just time to accept the fact that she has relapsed once more, and now she begins treatment again. The surgeon did get all visible Neuroblastoma out and a number of surrounding lymph nodes that may have become affected as well.

Emily’s recovery went well, and she is sleeping here next to us in our room tonight, and that’s a first for us. She did so well, that they (the surgical team) decided she could recover at the room as well as in the hospital, and after close monitoring of her vitals all day, they sent us packing around 6:00 p.m.

Next week, we will be waiting to hear what the plan is. The Oncology team of doctors, nurses, and nurse practitioners will sit down with the Surgical team, and Radiation Oncology, and design a plan for Emily’s treatment going forward.

Until then, we don’t know about the treatment plan, time frames, Emily’s hair, or how long we will live in New York. We know roughly that we will probably be getting radiation and chemotherapy, but types and doses we have to wait for the doctors to plan out.

So for now, we thank all of you who have prayed for Emily, and those of you who have passed her story on to others. Tonight we pray for a quick and pain free recovery, and that Emily has peace in her sleep tonight. She is very confused right now, and is finally of an age to understand when we are talking about cancer. We have tried to bring it down to her level, but reasoning with her about today’s events in her post-anesthesia state has been all but impossible. We are all exhausted, and are hoping for an uneventful weekend…indoors.

Again, many thanks to all of you, who have expressed concern, and now, we begin the fight again. So until later,

Good Night and God Bless,

David and Diane

Thursday, April 12, 2007 7:25 PM CDT

Hello Friends and Family,

We are here, and have completed day one of this venture into "maybe" relapse.

We got in very late, and had to be at the hospital at 7:30 a.m. to start the pre-surgery lab workups, so needless to say it was a short night of sleep and a long day today.

After lab work, we met with the surgeon (for those of you that know him, the beloved Dr. L) who spent time reviewing the scan images and he involved Emily in a good part of it. He took a tremendous amount of time with us explaining the whys and how’s of doing this surgery, and while he did have to do the obligatory "scare you to death" speech and tell us all of the potential hazards of this surgery, the risks in no way outweigh the benefit (or necessity) of getting this mystery mass out. We left the consultation with a great deal of confidence in the whole procedure, and the surgeon.

The mass is directly behind her jugular vein and carotid artery and when he started out saying that was the easy part, we got a lump in our throat. But thereafter, he continued to tell us that most of these surgeries are successful. But now, the $ 64,000.00 question...is it Neuroblastoma? We won't know until the mass is out and a biopsy is done, and so all future plans for treatment hinge on that. We once went to a conference where a Neuroblastoma doctor put it the best, "the issue is in the tissue".

So tomorrow at 6:15 a.m., our little Emily will be lying down on a surgical bed (with the help of some sedatives) and the mysteries will be unfolded. We have both decided that this is a "win-win" situation right now. If the mass is Neuroblastoma, and will come with a myriad of treatment options and possible heartache, we have caught it very early. If it is not malignant, we got a mass out of her neck that didn't belong there and we will be sent home, and oh what a party we will have for Emily. But because of her history, you can't put your head in the sand, so as always; we have chosen to move forward with a great spirit and an educated opinion.

Explaining the whole thing to Emily was a bit more difficult than we expected. She knew she was here for something, and she knew she was already scanned, and with all the talk with the surgeon today, it couldn't be kept from her any longer. She seemed to really want answers and Diane did a sales job on her that I have never seen. She gently explained the need for the procedure, the surgery itself, and the assumed short recovery time. Emily cried, and then said she didn't want to do it, and questioned why, and within 15 minutes, dried her eyes, and told Mommy she would be a big girl and do it. She fell asleep for a late afternoon nap, and since she awoke, has told everyone she has spoken to about her "operation" tomorrow, and that it's not that bad, and she'll be home soon.

Let's hope she can give Mommy and Daddy some of that same courage as we face this very important time tomorrow, and we just pray for the best of news and a successful surgery.

Tonight we ask prayer for Emily, in HIS name.

Good Night and God Bless,

David and Diane

Tuesday, April 10, 2007 6:53 AM CDT

Hello Everyone,

Emily was re-scanned yesterday, and our worst fears have come to be. She has a mass growing in her neck, and we have been directed to get back to New York immediately for emergency surgery.

We don’t know the exact protocol yet, but we will begin with surgery, and radiotherapy. We are flying up tomorrow, we will consult with the surgeon Thursday, and her surgery will take place Friday.

Of course nothing is definite until the mass undergoes a biopsy, but all roads lead to the idea that Emily has in fact relapsed again. We can cling to the outside chance that it is a ganglioneuroma (a benign mass), and will try to keep that positive thought as we face these next few days. However, with her elevated VMA levels, we can be cautiously optimistic at best.

So, as of today, we move forward with the fight, and the biggest challenge is explaining it all to a little girl who is a lot more aware of the goings on with her and her cancer. We want to be honest but not scare her, we want to be strong, but not intimidate her, and we want to cry, but have to be strong for her. The whole range of emotions is in full play right now, and we have chosen to think of the blessings in it all, and not dwell on the unfortunate circumstance that is relapse. We are thankful that it is not in her marrow, not in her brain or skull, and not anywhere else in her body. The fact that the doctor has said this is “very treatable” is all we need to move forward with hope, and that is what we plan to do.

We ask that you pray for little Emily for both her physical healing, and her emotional strength to take this all in. Please also remember all of the other little children that are fighting this fight and are much worse off than Emily.

Until later,

Good Day and God Bless,

David and Diane

Saturday, April 7, 2007 9:46 PM CDT

Hello Friends and Family,

We are back from New York, and as you can see on the photo page, the girls got their obligatory dose of Broadway courtesy of the fine folks at Disney Theatrics. This visit we got to see Mary Poppins, and as expected, they loved it. Disney really can’t do a bad show, and they continue to deliver the magic with each and every visit.

We had the usual round of scans this visit, and the results are varied, at least as we know them right now. Oh, and my apologies if this gets too technical, but many people are interested in the details of Emily’s treatment, and I know some of this may sound tedious. First of all, her bone marrow biopsies were negative / clear (a good thing), her CT scan was clear (a very good thing) her MIBG (nuclear medicine scan) showed some uptake in the neck area (not a good thing) and as of a conversation just yesterday, her catecholamine (VMA urine test) levels were elevated. This combined with the MIBG results, are definitely not a good thing.

This leads us down two possible paths, one of which we don’t want to entertain right now, or ever. If this is in fact Neuroblastoma, that would make this a second relapse, and we don’t want to even venture as to where treatment would take us in this realm. However, this could also be as minimal as an enlarged lymph node from a bad cold (which she has), that had an excess of blood flowing through it, and caused a notice in the scan. This doesn’t explain the elevated VMA levels, but we have not really found VMA to be a consistent measure of Neuroblastoma because when Emily relapsed in January of ’06, her VMA was normal, so go figure.

So, as of now, we have scheduled a CT of Emily’s neck for Monday, and are repeating her VMA here to see if there is a difference. It’s the first step in getting this nailed down.

Whether we want to face it or not, the faster we check this, the better. If it’s nothing, we get peace sooner, and if it is something, we treat it sooner. While we don’t want to be a Nervous Nellie, we have to head into this knowing that there are possibilities that are not pretty, and get ready to fight. At the same time, we pray and have faith that this could be a close call or misread scan, but in either event, we have to think about it.

This takes us to the next point. What is worse, the news of original diagnosis, news of relapse, or news of a second relapse? Fact is, they are all devastating statements, but all on different levels. At diagnosis, you are dropped to your knees, and fearful of the “C” word. At relapse, you are upset because of the statistics, and the idea that you worked so hard through treatment that this shouldn’t be coming back, but it does. And as for second relapse, we haven’t really allowed ourselves to delve into those emotions yet. People will say that the “not knowing” is the worst of it all, but maybe not. During this period of not knowing (between this past Friday and the scan on Monday) we can still cling to the hope that it is just a lymph node. We can still hold on to the idea that she has not relapsed again, and until someone tells us different, we will hang onto that thought like dear life itself.

So, until the CT on Monday, we continue to live our life, celebrate the miracle that is Easter, and pray that our Emily is spared future medical setbacks. Once the scan is done, I assume a determination will be made and we will posture ourselves to fight from that point. If it’s nothing, we will hug her a little tighter that night at bedtime, and while she won’t know why, we will.

Needless to say, as we enter this holiest of seasons, we ask prayers for Emily, and all of the little children fighting this disease right now, and we know that prayers will be answered. We are thankful for all we have, and just hope for clean scans on Monday.

So until then,

Good Night and God Bless,

David and Diane

Saturday, March 31, 2007 12:28 AM CDT

Hello Friends and Family,

Well, not a lot new to report from the home front. Emily has started Round 3 of her Accutane, and she continues to tolerate it very well. However, keeping an elementary school child out of the sun in Florida is a pretty difficult task, and to keep her totally indoors isn’t fair because then she feels left out when all the other kids are outside playing, so it’s a lot of reminders and a lot of sunscreen.

The Accutane also seems to have raised her cholesterol a little, and the doctors here are concerned and may begin contemplating lowering the dosage. So, now we will see what the doctors at Sloan Kettering have to say, and go from there.

In a few hours, we are flying to New York to see all our friends at Sloan Kettering and get all the routine scans, and maybe some information on future treatment options. We just pray that these three months off chemotherapy hasn’t changed anything, and that Emily continues to thrive and be healthy.

Please pray for all the little children that are not doing as well, and sadly, there are a lot of them. We just hope and pray for safe travel and good results. So until later (when we get back),

Good Night and God Bless,

David and Diane

Tuesday, March 6, 2007 9:10 AM CST

Hello Everyone,

It’s been a long time between updates, but to be honest, there’s just not that much going on. To be equally honest, we like it that way.

Emily is currently on her second round of Accutane and is tolerating the effects very well, but it’s probably because we learned our lessons from the last time she was on it. Now, we start moisturizing her skin and lips from day one, even the effects don’t start until we are a few days into week two. As a result, she doesn’t get the drying and cracking she did before.

The hardest to maintain is the sunscreen in light of her photosensitivity caused by the Accutane. We put it on every morning, but who knows how effective it is by the end of the day when she’s running around outside. In fact, while running errands this weekend, Emily walked from the car into the grocery store (maybe 60 seconds in the sun) and was sunburned that evening…please don’t call the authorities on us. She continues to wear a big hat, and it keeps the sun off of her face. Poor thing, she spent months wearing a hat to cover her little bald head, and now she has hair but has to wear a hat to protect her from the sun. I’m sure she will grow up to hate wearing a hat.

Next week we have conferences at school for both girls, and we will be updated as to their progress as we approach the end of first grade. We are thankful we went to such lengths to schedule Emily’s chemotherapy treatments after school because they have learned a lot this year and I don’t know if she could have advanced to the next grade had she missed all that time. The school has also provided her with new hearing aids this week equipped with FM receivers that capture everything the teacher says in her microphone, and directs it right into Emily’s ears. So, she has a set for home, and a set for school and this will limit the chance of her losing or damaging her original set.

It’s hard to believe, but we go back to New York at the end of the month, and we have a treat in store for the girls on this trip. We secured our tickets for Disney’s “Mary Poppins” on Broadway and they love their musicals. Other than that, we are just praying for another round of clean scans, and we will be asking once again about the ever elusive vaccine.

Finally, the wonderful folks at Harbour Towne Marina are having their annual fund raising fishing tournament on St. Patrick’s Day, and they have selected Emily as their beneficiary for this year’s tournament. They have helped us in the past and when they heard about Emily’s relapse and our subsequent numerous trips to New York for treatment, the insisted that they help us again and we are most grateful. So, if you are a fisherman and want to fish in the tournament, e-mail us, and we will pass on the information.

Please pray for ALL of the little children fighting this fight, including our little Emily, and until later,

Good Day and God Bless,

David and Diane

Wednesday, February 7, 2007 8:29 AM CST

Hello Friends and Family,

We are settling back into life at home, and have completed two weeks of school and had one local doctor visit.

There are no significant things to report from the doctor just yet, but Emily had to have the requisite blood work done to check the effects of the Accutane on her liver. While those results are not back yet, the physical effects are making themselves known to the naked eye, and we are taken back to 2004 when she was on Accutane last time, mostly had very dry skin and lips. The difference being that now, we know to head off the effects before they get bad and Emily is protected in advance. Emily has become a walking advertisement for Aquaphor skin cream and sunscreen.

This weekend, we went to the “Love Jen Festival” which is an annual festival that raises money for the Love Jen Foundation that assists cancer children and their families at Joe DiMaggio Children’s Hospital. The “Jen” in Love Jen is Jennifer Masi, who had Neuroblastoma as a child, but the disease eventually took her life. Her father, Dr. Nick Masi created this foundation to help cancer families with some of the monetary challenges of having a chronically ill child in the hospital. Over the years, this foundation has helped us greatly, and we have grown to love Dr. Masi and the work he does. So, since Emily felt okay and the weather was good, we went off for a morning of face painting, pony rides, crafts and fun. Later that same day we went to a local production of “The Rainbow Fish” and the girls loved it, and were exhausted by day’s end. Sunday, we watched the Super Bowl and the girls watched Animal Planet’s “The Puppy Bowl III” so all the TV’s were running and everyone was late going to bed.

Emily wanted a “No More Chemo” party with a cake, so we obliged. Emily and MaryGrace helped mommy with the measuring and mixing, and especially loved helping with the frosting! We have 2 aspiring bakers on our hands!

We were informed by one of her therapists that her speech has improved greatly, and she seems to be doing quite well in class with her hearing aids. Emily got her report card and was not only improved, but doing very well in school and with a little more normalcy will hopefully do great in closing out first grade with above average grades.

Emily’s next doctor visit is not until Monday, so it’s business as usual until then. Her skin is growing increasingly dry, and her lips are like wood. We moisturize her constantly, but the medicine is going to do what it does regardless. Now, she does have a shiny face and lips and we are spending more on moisturizer than our mortgage, but hopefully she won’t suffer the cracking and peeling she did in the past. We remain thankful that she doesn’t need chemotherapy, and will deal with the side effects of the Accutane. After all, it’s better than the side effects of the chemo.

Please continue to pray for Emily and all of the little children in this fight, and let’s just hope the vaccine and other treatments will eradicate this monster one day.

Until later,

Good Day and God Bless,

David and Diane

Monday, January 22, 2007 9:14 AM CST

Hello Friends and Family,

We’re back from New York and with all good news!

Emily’s CT was clear, her urine was clear, and her MIBG (nuclear medicine) scan was clear, and in fact the doctor said they all looked great. So all of this combined with the fact that she is now one full year free of disease, brought the doctor to a new decision regarding Emily’s treatment… No more chemo!!!

Emily will begin a six month cycle of an oral medicine called Accutane which while it is labeled as an acne drug, shows great efficacy in thwarting the growth of Neuroblastoma. She was on this back in 2004 and tolerated it quite well, so we are ecstatic to not have to race to the hospital for chemo every third week. It will be a well deserved break for her.

One of the deciding factors in halting the chemotherapy regimen was the chance of Emily developing a secondary cancer (most likely Leukemia) after having so many toxins in her blood for so long. We know that nothing is guaranteed in treatment, but the doctor felt quite strongly about this, so as always, we’ll follow his lead.

Hopefully, by the time we go to New York for her next set of scans, the elusive “vaccine” will be available, and she is slated to start the minute it becomes available.

New York was cold and it’s nice to be back in Florida where it’s warm, and reunited as a family. The girls are back in school, and its business as usual in the Adamson household. We are starting to plan a trip to Chicago in the summer for the annual Neuroblastoma conference. We have never been able to attend this event in the past, but are looking forward to this year.

Many thanks to all of you, who continue to pray for Emily, and as we have said in the past, the power of prayer is evident in her healing and her spirit. Please continue and be mindful of all the children fighting this horrible disease. Until later,

Good Day and God Bless,

David and Diane

Wednesday, January 17, 2007 3:23 PM CST

Hello Friends and Family,

Yes we are back in New York, and we have been doing all the usual things (including the mandatory stop at Disney NYC). This trip has wound up being a much longer one than we planned, but not for anything bad.

Two days before coming up, we were called by the hospital and told that the radioactive material needed to do one of Emily’s nuclear scans would not be delivered on time to do her scan on Wednesday because of the federal holiday on Monday. So, we scrambled to make arrangements and got a Corporate Angels flight home for Thursday and were content with that. Then, yesterday (Tuesday) we were told that the material was still not available, and they didn’t know when it would be. So step one was to cancel the Corporate Angel, then wait to see when we could get this test done.

A few hours later, the doctor’s office called and said we could get the injection Thursday and the scan Friday. So, we decided that Diane and MaryGrace would use the original plane tickets and fly home on the scheduled Wednesday flight and Emily and David would stay in New York and get the test done. Only now, Corp. Angels couldn’t bail us out, so it was time to put the war paint on, and go a few rounds with Jet Blue about re-using our now expired tickets. After about an hour of back and forth, relaying between supervisors, and trying to meet a schedule that would get us home in time for Emily to not miss more school, we secured a flight for Saturday evening for a minimal increase in fare.

As I’ve said in the past, it’s not enough to have to deal with the issue at hand (your child having cancer) but then all the other things that come with it are so taxing. We have missed scans, insurance issues, traveling and accommodations, and the airlines to contend with, and that’s all just on THIS trip. However, back to the silver lining…

As of just minutes ago, we got word that the scan we did get done, Emily’s CT, is clear and in fact the doctor said it “Looked Great!” and to anyone that knows him, he’s not a real expressive guy in his e-mails. So needless to say, we are thankful for the news and pray all the rest of the test results come out just the same.

It’s been very difficult to block out where we were this time one year ago, and being back here brings those horrible memories to the forefront all over again. It was one year to the day (Saturday, Jan 13th) that we were sitting in the surgical waiting room while the doctor went in to see what was appearing in her abdomen on the CT. Five hours later he came out and confirmed our worst nightmare of relapse and after that New York seemed that much colder. We’ve come a long way since that snowy visit that took us down another one of life’s learning trails, and while we don’t quite know what it is we are supposed to be learning, we came through it and that’s all that matters now.

We ask prayers for the remainder of Emily’s scans, and safe travel for all of us in the upcoming days. Please also remember all of the other little children fighting this disease right now, and keep them in your prayers as well. So, until later from an extremely cold New York City,

Good Night and God Bless,

David and Diane

Thursday, January 4, 2007 9:22 AM CST

Hello Everyone,

It’s been a while since the last update, but as the adage goes, no news is good news.

The girls thoroughly enjoyed Christmas, and are of an age now that they can grasp the real meaning of the holiday and not just the Toys-R-Us version. We attended a number of church services during the holiday season and was nice to see them understanding the Christmas story, and taking it all in like little adults.

For New Year’s we had the best weekend we could ask for. We did nothing. It was the first holiday that we could be home with no obligations to entertain, or to have to be somewhere, or be in a hospital, just home sweet home.

Now that the holidays have passed, Emily has begun yet another round of chemotherapy, and this will continue until Saturday. It’s usually Monday through Friday but because New Year’s Day fell on a Monday, it’s all pushed back one day. After this round, she will have two weeks off, and would normally start again. However, in two weeks we are going to New York again for her scans and to meet with the doctors there to see what they recommend for treatment going forward. But in the name of living life “one day at a time” we are just praying for clean scans and will be thankful in the blessing that Emily is now disease free for one year since her relapse. Treatment plans will be made known to us in time, and there’s no sense in worrying about it until we meet the doctor.

We thank everyone who donated to Emily’s Giving Tree, and helped raise money for Lunch for Life and pediatric cancer research. As I said before, we have met the founder of this charity and have personally seen his work and the distribution of monies to worthwhile researchers in the pursuit of beating this disease.

So, as we prepare to go back for scans and the anxiety that comes with it, we ask that you continue to pray for Emily, and all the little children fighting this fight. It’s a new year with hopeful new prospects for treatment, and the power of prayer has proven itself on more than one occasion for little Miss Emily.

Until later,

Good Day and God Bless,

David and Diane

Wednesday, December 13, 2006 4:34 PM CST

Hello Friends and Family,

The Adamson clan has returned from a much needed respite from our otherwise very busy life.

Emily had chemotherapy last week, and got through it great with almost no side effects, and we are eager to find out if we are approaching the end of these cycles. She has been on a regimen of one week of chemo, then two weeks off, then start again, and has had somewhere around eleven of these cycles since we got home earlier in the year. That’s not counting the other chemos she got prior to returning home or the one she had to be hospitalized for when we first got home. So needless to say, as parents, we would love to see an end to this for her sake. But we just have to wait, and see what’s in store as far as the vaccine.

As the photos will bear out, we spent our “leisure” time taking in the magic that is Walt Disney World. The girls can never get enough of the place, and this time we stayed in a hotel that was “on-property” so we could go everywhere by monorail and not have to gamble getting lost trying to go by car each day. The girls had a ball with a different park each day, and fireworks each night that they could watch from our hotel room patio and that made Mommy and Daddy happy to not have to go out again to see them. There is nothing like Disney at Christmas time, they go all out with the decorations and music. While we were there, they were sprucing up Cinderella’s castle for the upcoming ABC Christmas Day special. Of course, Emily was quite upset about why there was a crane lurching over the castle, and felt it should be removed at once.

As we approach the holidays, the schedule continues to get busier, and Emily already has a full schedule of medical appointments for while they are off on Winter break. She has a hearing evaluation, a dentist appointment, and a test called VCUG which tests her bladder reflux. This is a condition she has had ever since her surgery in January of ’04 when they removed the tumor. It has gradually improved, but is still not right and she has been on constant antibiotics for almost three years to prevent infections from the reflux. So, needless to say, we are going to have our hands full with all these tests.

Once again, the charity that is raising money for Neuroblastoma research (Lunch for Life) has started their annual fundraising initiative, and Emily is a part of it again. After reading just a few minutes of their website, you can see they are strictly in this for pediatric cancer and research for its cure. They do the holiday fundraising by means of a “Giving Tree” and every $ 5.00 donation puts an ornament on Emily’s Tree, and the idea is to get as many ornaments as possible. We have seen this group in action, and they have already taken substantial checks to Memorial Sloan Kettering for their research of Neuroblastoma.

So, if you care to donate, you can click on the link below for “Lunch for Life” (which is http://www.lunchforlife.org/) and go to Emily’s Giving Tree. Her giving code number this year is 22215 and whether you donate or not, at least pass this website on to as many people as you can, and by numbers, we can raise money to eradicate this horrible disease. Many people don’t know this but here are some interesting facts:

That more dollars continue to be cut from research programs across the country as the government continues to reduce medical research spending. Additionally, although we continue to see children in advertising for the American Cancer Society, less than 4f those funds actually go towards pediatric cancer and sadly enough less than 10f even that fraction will be put to use towards neuroblastoma. That is approximately 40 cents for every $100.00 raised. Even the large pediatric cancer organizations have difficulty getting research dollars into the hands of those that need it most. Even Cure Search, the foundation supporting the largest children’s oncology group in North America which supports the clinical and biological research at over 200 participating institutions and treats about 90f pediatric patients spends less than 5f every dollar raised on neuroblastoma. In short, it is us, the families and friends of children with neuroblastoma that have to make the difference. We must do better for our children and that is why Lunch for Life is here.

• Cancer is the number one disease killer of children in the United States.
• Neuroblastoma is the most common cancer found in infants; almost double that of leukemia, and the most common solid tumor cancer in children, second only to brain tumors.
• Childhood cancer kills more children per year than cystic fibrosis, muscular dystrophy, asthma and AIDS combined.
• There are 15 children diagnosed with cancer for every one child diagnosed with pediatric AIDS and yet the U.S. invests approximately $595,000 for research per victim of pediatric AIDS and only $20,000 for each victim of childhood cancer.

We had reservations about asking people to donate after all we have been blessed with so far, and all that you all have given, but when it’s broken down into $ 5.00 units, it seems a lot less threatening and we have the luxury of knowing the founder of this charity and knowing for a fact that 100 f the money raised is going to research and not administrative fees.

So, we look forward to a little time at home with holiday spirit, and preparation for Christmas, and just hope that things stay normal, and that other families are able to do the same. We know there are so many other children in different phases of treatment and many will not be able to have Christmas at home and for them, all we can do is pray, and know that it’s more important to be in the hospital getting treatment, than to be at home in a compromised state. We cannot even count the scores of holidays and special occasions that were missed during Emily’s treatment, but we were pursuing the goal as a family, and just looked forward to the next holiday and hoped we would be in a better situation the next year.

So until later,

Good Night and God Bless,

David and Diane

Wednesday, December 13, 2006 2:20 PM CST

Sunday, November 26, 2006 9:12 PM CST

Hello Everyone,

Happy Thanksgiving!

Emily completed another round of chemotherapy before Thanksgiving week, so her tummy was pretty well back in order by the time turkey day came around. She had relatively no side effects, and she doesn’t seem to mind the treatments, so we trudge forward until we get word of something new to do.

The day after Thanksgiving, the girls went to the Festival of Lights in Miami Lakes where they were invited to help Santa turn on the Christmas lights for Main Street (see the photo page for a picture). Literally, hundreds of people attended, so the honor of helping Santa was a very special event. They were excited and loved all the activity and bustle about the beginning of the holiday season.

Sunday, we met up with Grandma Jeanne (David’s Mom) and got to catch up. They don’t get to see her as often as Grandma Ruth, so it was very special. We had a really nice visit.

This week, is all work for us, and all school for the girls, so we aren’t expecting much different this week. It’s all about the holidays, and getting ready. So now it’s getting a tree, shopping for presents, and decorating the house. It’s all about the season. Happily, we are almost done shopping, thanks to “free shipping”, since we have done almost all our shopping online!

We go to New York for scans in January, so we get to roll through the holidays without interruption, and worry. Then, come January, we start with the pre-scan jitters again. It was this round of scans last year that uncovered Emily’s relapse, so we enter into every scan period with great anxiety, but also with faith that things are going as they should.

As always, we ask prayers for Emily and all the little warriors fighting this fight. This holiday season is a time to think about our blessings, have faith, and have compassion for the families of all the little ones who lost their fight this year.
Right now, we pray, we give thanks, and we rejoice in every day that Emily is free of disease, and trust that things will be even better next year.

So, until later,

Good Night and God Bless,

David and Diane

Sunday, November 12, 2006 9:41 PM CST

Hello Friends and Family,

We enter into another week of treatment tomorrow, as Emily starts her next round of chemotherapy. Even though it is a bit of a struggle to meet the schedule of her school, her tutor, her speech therapy and hearing analysis, her medical treatment and maybe some time to “be a kid”, she handles it well, and that makes it easier on us. Emily never complains about going for treatment, and she loves all her friends at the hospital, so we can live with the one week on and two weeks off.

This weekend was filled with activities, and Emily and MaryGrace took their best try at scooters today and Emily ended up with some skinned knees and elbows
(“Bad Daddy” for not having her pads on) but she insisted she wasn’t hurt, so maybe next weekend we’ll try again.

Last weekend was fun as we kept track of our New York doctors’ progress in the New York City Marathon, and it was nice to see that their commitment extended beyond the day to day medical care. The fact that they wanted to run 26 miles to raise money for pediatric cancer research was heartwarming.

Otherwise, everything is status quo, and we will start another round tomorrow, and go from there.

We ask many prayers to all of the children fighting this fight, and the families of those whose children have earned their angel wings. At this point we pray for knowledge for all our doctors, and are thankful for their faithful dedication to treating this disease.

So, until later,

Good Night and God Bless,

David and Diane

Sunday, November 5, 2006 9:00 PM CST

Hello Everyone,

All the news has trickled in, and it appears Emily is good to go for another three months. We got confirmation that what the doctor read from the scans was correct. While we still know she has to be monitored closely, we rejoice in the fact that she is free of disease.

We actually made our mind up that we no longer want copies of the written reports of all the scans from the radiologist, because it just gives us a lot of words to look at, for something to worry about. Fact is, there is verbiage in those reports that may be of no consequence to us, and while we sit and read it over and over, all we do is call the doctors and ask questions, even after he has told us everything is fine. So now, we leave New York knowing, if the doctor said she’s fine, she’s fine.

They are back into the swing at school, and Emily & MaryGrace start private tutoring next week. Nothing heavy duty, just a few days a week after school to refine the education they are getting during the day. Our next visit to New York won’t be until January, but at that time, they should be doing well in school and can spare a few days off.

So now, we are packing away the Halloween stuff, and getting ready for Thanksgiving. This has become a special holiday in our house recently considering all we are going through. While it has been tough, we remain Thankful for every day that Emily is free of disease and gets healthier.

After our January visit (or possibly before) there will be a new vaccine therapy plan for Emily, and it will require numerous trips to New York and that means a few things. First, it means a lot of missed time in school for Emily. Second, we know that this is going to be a lot of flying back and forth to New York and at a great expense, especially when you have to fly at a moments notice and buy tickets at the last minute. Lastly, we have to face the realization that if the visits out of town are this frequent, we are faced with one of the two of us missing a lot of work, and have to figure that out as well. We are trying not to worry about these things. Every cloud has a silver lining, and we will do as we have always done, and take care of Emily and wait for the silver lining to show, it always does! We know it will all work itself out.

This disease is horrible and we extend prayers to all the children it has taken from us, especially recently, many of whom we know. Please pray for the families of Christi, Hazen, and Lana Beth. We ask peace for them, and solace as they deal with the loss of their beautiful child. As for us, we move forward in our faith in God, our doctors, and Emily’s good spirit and trust that the combination of the three will see us through to better times.

So until later,

Good Night and God Bless,

David and Diane

Sunday, October 22, 2006 9:12 PM CDT

Hello Friends and Family,

We are back from New York, and we came home with good news.

Because of scheduling mistakes, Emily’s last scan was actually the morning we were supposed to fly out, and it made for a stressful day. However, even though it was a rush, after the scan, our doctor met with us and delivered the news. The scans had not been officially read by the radiologist at Sloan Kettering but he opted to go look at them himself and said that they all looked clear. Even though these were not official reports, we have enough faith in his experience to go home with the greatest news we could expect right now.

In addition, we were given some options as to Emily’s treatment, and after evaluating everything we agreed to continue her existing treatment plan and she will start tomorrow with her next round of chemo. Sometime in the future, hopefully we will be discovering a new treatment, the Neuroblastoma Vaccine (invented at Sloan-Kettering) but we were told we have to wait. Emily is slated to be one of the 1st children to get it. Therefore, we will continue what we are doing and will travel back to New York in January to see what’s available.

Everyone in New York said that Emily looked great and her blood work reflected the same so we are on a three month hiatus and can go through the holidays without anymore trips out of town.

While in the Big Apple, we took in all the sights, and as the photos show, we took in Beauty and The Beast again. The production now has new lead performers and “Gaston” was played by Donny Osmond so Mommy was more that happy to see the play. What’s more, we got to meet the actors after the play, and it was a great evening.

As of now, we are happy with the current results, and even though there are more results to be turned in, we have faith that this was a good visit. So as always, we ask prayers for Emily and all of the other little children fighting this fight.

Until Later,

Good Night and God Bless,

David and Diane

P.S. - You can check out new photos from the trip on the photo page

Sunday , October 15, 2006 8:35 AM CDT

Hello Everyone,

As you can see, we are back in New York, and before we hear from all our friends in the north; yes, we are all bundled up because to a Floridian…this is cold. Not that we mind, in fact it’s refreshing. I mean, it’s not like the January blizzards here we’ve endured over the last two years, just a brisk mid 40’s in the morning and mid 50’s in the afternoon. But that’s still a good 40 degrees colder than where we just came from.

We took our usual trip to Central Park, and the girls had a blast, and after the casual stroll, we headed to the carousel which is always a favorite. Afterward, we went sightseeing and wound up at the Disney NYC store (go figure), then headed back to the room. Tonight we are going to take in “Beauty and the Beast” on Broadway and I am sure the girls will love it.

While the reason we are here is an ugly one, if we have to be here anyway, we may as well make a happy memory of it for the girls because we don’t know how long we will have to continue to come here. So, we would rather keep it pleasant, and the doctor stuff is just an inconvenience during a fun trip.

Then, tomorrow, so much for fun, it’s off to Sloan-Kettering to begin this series of scans, and find out what the future holds for Emily’s treatment. We’ve heard stories of all sorts of different things for kids with Neuroblastoma, but while they share the named disease, treatments vary child to child. That is a tough thing to swallow, because you hear of someone else getting something you didn’t and wonder if Emily would be doing better if she got the same thing. Again, the doctors know what’s best, but you can’t help but have those feelings sometimes.

So, as we progress, we will update as we get news. For now its wait for the procedures, keep Emily happy, keep her sister entertained, and keep ourselves sane and not worry.

Many prayers to all the other little children fighting this fight, and we ask prayers for good results for Emily. Until later,

Good Night and God Bless,

David and Diane

Sunday, October 1, 2006 8:37 PM CDT

Hello Everyone,

It’s still nice to be home, and now we (actually Emily) have completed another round of chemo. This makes ten rounds total since her relapse in January and I don’t know how she maintains such a good spirit continuing to go to the hospital. I know the nurses are great and the doctors go out of their way to make her comfortable, but any other kid would think that “enough is enough”.

Luckily, Emily just goes along with the drill, and is happy wherever she is. She is not afraid to go to the hospital, or doctor visits, or anything else and to be quite honest, that makes things easier on us as parents. Even when we have an unexpected problem (like a few weeks ago) she just plays along knowing that if Mommy and Daddy say this is what we have to do, she’ll do it.

Now that this round of chemo is complete, we recuperate for two weeks and fly to New York for another round of scans. As much as the scans reveal good news, we are always apprehensive to go to New York, because, we can also get bad news. So, we hold our heads high, do our scans, and entertain the girls with the treasures of New York, and keep the faith.

Emily is catching up quickly at school and we are happy to see her doing so well. As of her last parent / teacher conference, she is actually right in the range with the other kids even though she missed all that time last year, and we feel that she will be up to par, or even advanced, by years end (medical issues not withstanding).

We ask prayers for all that continue this ugly fight, and we ask peace and solace for the families whose little ones have lost the fight, and have gone to God’s Kingdom to be in his grace. There are no answers, only fighting and faith, and in this disease, that is all we have.

To all we wish many prayers, many good thoughts, and God’s blessings, and say

Until Later,

Good Night and God Bless,

David and Diane

Monday, September 11, 2006 7:08 PM CDT

Hello All,

As the picture says, it’s nice to be home.

Emily was finally released from the hospital after what seemed like an eternity (actually, 15 days!). Our little girl was so sick, and it’s hard to believe, a bacterial, intestinal infection could make her sicker, than some of her chemos. Thank God, she is over the worst part of it, and happy to be home. However, it was actually ahead of the schedule that the GI doctors were following, but there wasn’t much more for us to do being inpatient. They had peeled away most all of her medications, weaned her off the TPN (Total Parental Nutrition, or IV nutrition) and she was holding up okay, so we were finally sent home with very specific dietary instructions. Unfortunately, she is off dairy for 2 weeks, and her favorite foods are milk, cheese, and yogurt, so her diet is a challenge.

So, she has this week to recover, and then they we wreck her body again with more chemotherapy that causes diarrhea. It hardly seems fair, but while it is inconvenient, it’s not cancer, so it’s manageable. The doctors here are working with the doctors in New York to come up with the perfect mix of preventive drugs to keep this from happening again, and protecting her stomach & intestines from further damage.

Emily started back to school today, and had a wonderful time of it. Luckily, over the past two weeks, we’ve had hurricane scares and holidays so hopefully she didn’t miss too much actually learning time and will catch up quickly.

Next month it’s back to New York for another series of scans, and hopefully an update to Emily’s treatment plan. While we know this continuous chemo is doing its job, it’s so taxing on her poor little body and after all she’s been through, she deserves a break.

We owe many thanks to Diane’s high school friend, Gay Brock, who wrote a glowing article about Emily’s night at the baseball game in the Sun-Sentinel. She wrote about her throwing out the first pitch as well as the human interest side of Emily’s story and her battle with cancer. The Sun Sentinel gave her article a nice position in the paper, and had very cute pictures to go along with it. In addition, the team sent us pictures of that beautiful evening and we are so grateful to Angela Smith and Chris Huff of the Florida Marlins for Emily’s special night.

Lastly, we ask prayers for all the people affected by the events of 9/11/01 as well as all those affected by this horrible disease. We are almost continually faced with children who are not doing well, and know that all we can do at this point is pray for strength for the families and healing for the children. We ask the same for ourselves, even though sometimes we may feel less deserving in light of Emily’s relatively good condition and progress,. Until later,

Good Night and God Bless,

David and Diane

Thursday, August 31, 2006 11:01 PM CDT

Hello Friends and Family,

Well this is an anniversary, but it’s one we wish we didn’t have to commemorate. Three years ago tonight, we rushed Emily to the ER and began a journey (not to be cliché) that would change our life forever. We enter into the fourth year of this new life with a lot of emotions, an incredible increased awareness about cancer, and a greater appreciation for life itself.

As our journal has chronicled, we have covered the gamut of emotions and experiences, and all we ask now is healing for Emily, and strength for us to take on any future obstacles.

We have been from Stage IV cancer, through treatment, to disease free, to relapse, to disease free again, and we live with the knowledge that this monster will be over our shoulder forever. When things are good, it’s easy to grow complacent with your situation, but the fact that we are in the hospital as I write this, we are reminded that things will never be normal again.

This is not to say this road is all doom and gloom. In fact, if we are to look beyond our self pity for a silver lining we can say we have learned a lot of life lessons that we may never have come across otherwise. And by that, I don’t mean just the pedestrian little catch phrases you read on greeting cards, but real, meaningful thoughts that can be held and valued throughout life and with any luck, passed on to others who may need a bit of wisdom. Not that these are absolute truths, or that we have all the answers, but these thoughts came from life experience which I am certain is the best teacher. Such items include:

• Children absorb their parent’s emotions, so if they see fear they will be afraid, but if they see smiles, they will do the same.
• Replacing your need for control with honest to God faith, will get you much further than trying to be the boss over cancer.
• Listening, even if it’s something you don’t want to hear, will get you more than screaming at the top of your lungs. That goes for doctors, well wishers, and your child as well.
• If you’re 5 minutes late for an appointment because your daughter wants to walk by the flowers and pick one on your way to the hospital, the doctor will understand.
• If your child is sick, it really won’t matter if they eat cereal for dinner and lay on the couch with Mommy and watch Willy Wonka. They have a whole lifetime to eat healthy.
• Remember, your well child/children need just as much love as your sick one.
• Marriages don’t have to suffer because of a chronically ill child; you just have to pay attention to each other. And if you’re doing that right, you will actually grow closer.
• Life is not fair.
• There is a great freedom in knowing that what you thought was important has been forgotten about in light of caring for your child. Priorities become shifted, and almost always for the better.
• “Don’t sweat the small stuff” was just a book title before, now, it’s a way of life.
• You will truly learn who your friends are.
• You are guaranteed nothing in life, so take the blessings and embrace them.
• You can calculate the proper dose of Tylenol for your preschooler faster than the pharmacist.
• You can sleep anywhere, at anytime, in any position, and are thankful for the time you get to do it.

These are just a few of our thoughts, and while some are humorous, they are our life now and all very real.

Emily is still in the hospital and while she has tested negative for the dreaded “C-Diff”, she still has the same symptoms. The doctors have called in the infectious disease doctors (specialists) and they have ordered a whole battery of new tests based on the fact that she is not responding to these drugs, and the fact they found out we were on a cruise. We don’t know what this will reveal, but at least it’s another avenue to investigate.

So until we know more, we wait, and care for little Miss Emily. We ask prayers for all the other little children fighting this same fight. We also ask prayer for Emily’s healing as the doctors are still not certain what we are treating, so it’s all prayer and faith right now.

Until later,

Good Night and God Bless,

David and Diane

Saturday, August 26, 2006 8:37 PM CDT

Dear Family and Friends,

Just a quick update, Emily is inpatient at Joe Dimaggio Children's Hospital, suffering with continuous vomiting and diarrhea. Her problem was diagnosed as a bacteria, Clostridium Difficile, or c-diff. Normally, it is quite simple to treat, with oral antibiotics, but her continuous vomiting had made IV fluids and IV medications necessary. Please pray for her healing and comfort. Even in her worst moments, her sweet disposition takes over.

On a lighter note, Emily had a great day Friday. After a few hours of hydration, and the completion of another week of chemo, the doctors cleared Emily for her evening extravaganza...delivering the 1st pitch at the Fl. Marlins game. She pitched the "much practiced" overhand pitch to Billy the Marlin (the Marlin's mascot), and got a roaring round of applause. Pictures will be posted soon!

Again, please remember Emily, and all the other fighting children in your prayers.

Good night and God Bless,
David and Diane

Thursday, August 17, 2006 9:11 PM CDT

Hello Friends and Family,

School has started, and the girls were ready to go. As we mentioned before, we opted to have them in separate classes and that has worked out for the better. The two teachers that the girls have share classrooms with an adjoining door, so they can both see each other at almost any given time. These teachers worked together last year, but this year enrollment was up enough to put them in separate classrooms but their teaching style is similar and logistically, the girls are close.

Once everything gets going, Emily will begin speech therapy again, and now that she is older, I think it will be time better spent. Emily reconnecting with her speech therapist, the principal, and all of the other school personnel was a comforting thing for her, and she is clearly happy to have gotten back to school, and everyone is very happy to see her. We have traveled back into that (do we dare say it) normal zone that is a very happy place for Emily.

The only deviation from “normal” is the fact that every three weeks, Emily goes for chemo, but even that has been worked out. She is able to go get her chemo treatments after school so she will miss almost no time and can stay in treatment as long as need be. She in fact will start her next round this Monday and at the end of that week, is a special treat for Emily.

Next Friday, ( 8/25/06 ) Emily will be throwing out the first pitch at the Florida Marlins game, and we encourage all of you here locally to come out to the game. It’s a Friday night game, so there’s no sun, no work, and no excuse to not be there. She has a great arm, but we still have a little problem with control, so we know the ball will fly, we just have no idea where.

We are happy that the girls are enjoying school, and considering Emily’s chemo schedule, we are living life week by week. We go back to New York for full scans in the middle of October and are looking forward to clean results again, and getting through the end of the year without a repeat of last year.

So as always, we ask for prayers for Emily and all the little children fighting this fight. Some are doing better, some are doing worse, but they all need prayers.

Until later,

Good Night and God Bless,

David and Diane

Tuesday, August 8, 2006 9:07 PM CDT

Hello Everyone,

We are home from our excursion but first things first, EMILY’S CT SCAN WAS CLEAR, PRAISE GOD!!! The previously noticed enlarged lymph nodes are now normal, and there is no evidence of disease. Therefore, we are left to believe that the original suspicious opinion from her CT in late June was a result of her bronchial infection prior to her New York tests.

Our cruise was wonderful and we had a great deal of time to relax and enjoy family life, which we haven’t had in a long time. The Disney Cruise Line was absolutely wonderful, and we didn’t have a minute to breathe, but all in the name of entertaining the girls. They had an absolute blast.

Emily and MaryGrace posed with characters, and could almost never turn a corner without finding Mickey or someone else and it became a marathon of Disney Character intake the whole cruise. Grandma had an adjoining room, so when they got tired of hanging out with us, they went into her room, and begged for more Disney programming. All being said, even Grandma enjoyed the trip because she kept up the whole time, and ran the Disney Channel during the entire cruise.

Next week, the girls start back to school, and we are thankful that Emily was evaluated as qualified to begin first grade along with her sister. However, they will be separated for the first time since birth (not counting hospital visits) but we feel it’s time. With all the time Emily has missed, we don’t want her to live in the shadow of her sister, and on the same hand, we don’t want MaryGrace subjected to the special attention that Emily might get because of her status.

So, in this all, we are thankful for Emily’s results, and in addition, we ask continued prayers for Emily and all the children fighting this fight. We thank all of you that have prayed and we know that this is what gets us through to the next day.

So until later,

Good Night and God Bless,

David and Diane

Thursday, August 3, 2006 7:29 AM CDT

Hello Friends and Family,

This is going to be an incredibly short update as we are leaving on our Disney cruise and in true Adamson Family style, we’re running behind schedule.

This is our last hurrah before getting ready for “back-to-school”. We are so happy that Emily was evaluated to be advanced enough to start first grade along with her sister, even after missing the entire second half of the last school year. Orientation is next week and we will get our class assignments and see if they are in class together or not. We pretty much decided it may be best to separate them, and have them develop their own personalities, and not have Emily live in MaryGrace’s shadow.

However, before all that, we have some rather serious business to attend to. When we get back, Emily has a CT scan to find about those enlarged lymph nodes in her chest. We are praying that the condition was a result of her previous respiratory problems, and NOT Neuroblastoma. So at this time we are reaching out to all our prayer warriors to pray for a good outcome Monday morning. Her scan is at 6:30 in the morning, so hopefully we will get preliminary results that day, until then all we can do is pray.

So, we are off, and many prayers to all of the other little children fighting this same fight. We will update after we get word on Monday, so until later,

Good Day and God Bless,

David and Diane

Tuesday, July 11, 2006 10:46 AM CDT

Dear Friends and Family,

Here we are, July 11th, 2006 and six years ago today our girls were born. With all the experiences we have had since their birth, they certainly look no worse for the wear, and are enjoying the summer to the fullest.

Over the weekend, we had a little get together (family only) and needless to say, between the gifts, the attention, and the sugar, getting them to bed that night was a challenge. As best I can measure, it’s only going to get worse.

This weekend we are going to Captiva Island for a mini-vacation and seashell collecting is the big event there, and there is almost nothing they like more. Then in a few weeks, we are going on a Disney Cruise for Mommy’s Birthday (of course it looks more like it’s for the girls) and there is no telling how much fun they are going to have, but it looks a like a great time.

Emily completed another week of chemotherapy and is doing really well with it. Once we are back from all our vacations, we go for another CT scan of Emily’s chest, abdomen and pelvis. This is in hopes that what was seen in her last scans (enlarged lymph nodes in the chest), was a result of her “near-pneumonia” scare a couple weeks before we went to New York, and not from Neuroblastoma.

While we have a lot to be concerned about, and of course a lot to be thankful for, today we just rejoice and celebrate the girls’ birthday…everything else can wait.

So, until later,

Good Day and God Bless,

David and Diane

Sunday, July 2, 2006 8:08 PM CDT

Hello Friends and Family,

We’re back from New York, and in spite of the horrible weather, we made the most of the trip. We flew out a day early, anticipating having a free day to do fun New York things, and thank goodness we did, because the rest of the time was filled with hospital stuff.

The first free day we went to the Central Park Zoo, and ducked in and out of the rain to take in the sights because we weren’t about to miss out. Then, we cruised around the park, and headed down town for the biggest adventure of all. We went to the Disney NYC store and as luck would have it, all of the streets were barricaded off, and we had a very tough time getting in. As it happens, the intersection in front of the Disney store was the starting point of the New York Gay Pride Parade. While the girls loved all the beautiful rainbows and flags, we had a tough time explaining the ambiguously gendered participants, and just getting in and out of the neighborhood was a nightmare.

Once we got back to the room, we relaxed and Mommy and I feasted on what continues to be one of our favorite New York restaurants, Afghan Kebob House II. We continue to try a game of “around the world with food” when we are in New York, and this is an all time favorite but after a few days, you just can’t help but succumb to a regular big old slice of NY pizza or a hot dog from a street vendor. Of course we would never think of eating food from a stranger on the street here in Florida, but it seems natural in New York. So every visit usually involves eating some sort of meat (identifiable or not) from a guy on the street with an accent so bad you don’t really know what you ordered, but you eat it and are happy, and have to move on so as not to disrupt the New York street vendor economy which is a felony there.

As for the medical side of things, the short answer is Emily is still disease free, and we waited to update the web page until we heard back on everything. However, we got some other news that is a bit different than what we expected. We thought we were done with chemo, but it seems the doctor wants to continue with it “indefinitely”. This is a precautionary step as best we can tell as the Neuroblastoma Vaccine is not ready yet, and there have been a number of children who completed a similar relapse protocol to Emily’s and stopped because they were free of disease and later relapsed a second time. So, we continue, starting tomorrow, and if that’s what they think will work, that’s what we’ll do.

Emily’s actual results indicated she was free of disease in her bone marrow, but the CT scan showed enlarged lymph nodes in her chest area. Since she never had involvement in her chest, we were very concerned. However, our doctor here explained that there could be a lot of reasons for the lymph nodes to be enlarged outside of cancer. So, between her opinion, and the fact that the other scans showed no evidence of Neuroblastoma, we are now breathing easy knowing she is still disease free. Even though, they are recommending a repeat of the CT in 4-5 weeks, we look at this as a positive move forward.

As I stated, we start chemo in the morning, and it will continue to be one week on and two weeks off, until further notice. From here, it’s all about faith. Faith in the doctors, faith in Emily’s strong will, and faith in God to deliver her from this disease to one day rejoin her childhood as a normal child without the constant medical treatment. Until then, we do what we are told, and keep her happy.

We ask many prayers for all those children fighting the same fight as Emily without as fortunate results, and their families to stand by them through the struggle. We hope and pray every day that a cure may be found, or even an adequate treatment to keep these kids in remission (even though, they don’t, like us, using that word) but until then we just pray.

So until later,

Good Night and God Bless,

David and Diane

P.S. - For those of you wondering, we did not get a dog. The adorable puppy in the picture with Emily belongs to her cousin Ryan and her name is "Honey". He brought her along on Father's Day and Emily took right to her.

Saturday, June 24, 2006 8:59 AM CDT

Hello All,

Well, we’re off to New York this morning, so this is going to be brief.

Emily had a clinic visit on Thursday and the doctors gave us their blessing for her travel. She is recovering nicely, and they said she looks great. Now we get scanned next week and make sure she’s as healthy on the inside as she appears on the outside.

We ask prayer for her to continue to be cancer free and that we may have a safe journey. In addition, we pray that there are no tropical storms coming this way while we are away and can do nothing to prepare our house. It reminds of us the first summer we went to New York for treatment and we were taking a leisurely double-decker bus tour of the city when we got a call that a Hurricane (Charlie I think) had blown a tree over onto our car. In fact every summer visit has involved something coming out of the tropics while we were in New York, but we were home in time for Katrina, Rita and Wilma. However, the thought of one of those hitting while we are in New York is scarier than being here for it.

Once the scans are completed, we will meet with our doctor at Sloan Kettering and find out what the next course of action is. Presumably, she will still be free of disease, and we will discuss preventive type treatments and not have to go back into chemo anymore.

When we get back, the girls will continue with Summer School. Emily has private tutoring twice a week and speech therapy once a week, not much of a relaxing summer for the poor thing. However, her reading has really improved in the past few weeks.

So again, we ask prayer for clean scans for Emily, and all the little kids fighting this disease right now. Until we return,

Good Day and God Bless,

David and Diane

Saturday, June 17, 2006 6:07 PM CDT

Dear Friends and Family,

Emily has completed what we can only hope and pray is her last chemotherapy treatment. She has been recovering this past week and she and her sister have been going to Summer Camp. This is more like school than a camp, but it beats them sitting home and their brains turning to mush. More importantly, they love it.

There have been no more incidents with Emily’s pneumonia scare, and the breathing treatments seem to have done the job and allowed her to sail through this last round of chemo. We are waiting for her counts to fully recover and provided all goes as planned we will be flying to New York for a full series of scans, and bone marrow biopsies next week.

We have also started to inquire as to the viability of doing a stem cell collection for Emily. If we ever have to face another relapse again (God forbid) and require another form of treatment that would deplete her bone marrow, we would at least have reserves of stem cells on hand to boost her body to make new cells again. The body can only take so much toxicity, and she has gotten quite a bit already, so a little insurance and planning can’t hurt.

As you may be able to see from the photo, Emily is growing hair again, and I think we are happier than she is. Right now it looks like a five o’clock shadow, but it seems to be growing by the day, so hopefully she will have some decent length by the time school starts.

In honor of Father’s Day, I have placed the following little narrative story below. As much as I might like to take credit for it, it is not mine, but it reflects my sentiments and those of fathers going through this nightmare right now.

"A father's reflections"

'I suppose that the general Dad experience is one of anger and helplessness. Dads are supposed to be the protectors of their families. Burglars, thieves, cutthroats, and murderers lurk outside the gate, and will be dealt with summarily if they chance to invade our kingdoms. There is a powerful fantasy of defending the castle against all comers, even laying down our lives to keep our children safe.
A diagnosis of a grave illness is sneaky, however. It is a spy, an assassin that has entered our lives through the sewer grate. Suddenly we realize that the princess is held captive in her own room, with a knife at her throat, and we are standing helplessly, stupidly, in the courtyard with useless weapons in our hands.
At the moment of our daughter's diagnosis, my wife and I set out on different journeys to rescue our child. More like two different takes on the same mission, two complementary approaches. For Mom, it was about comfort. Make our baby comfortable, make our family comfortable, share feelings and insights with visitors, things she was willing to do 24 hours a day at the expense of her own health. For me, it was about facts. What, exactly, is the diagnosis? What are the odds of complete recovery? What will be the results of the surgery? Where will we stay? What about the insurance people? Who will feed the dog?
Interestingly, the doctors told me not to read books. Current therapy and practice are advancing so rapidly, that a book is far out of date the day it’s published. So I went to the medical library at the hospital and read current periodicals and extracts. Good news. I asked tough questions at the doctor's conferences. Good numbers. I wrote regular news letters so that we wouldn't have to tell the same stories over and over. Good work.
Meanwhile, my wife sat by our daughter’s bedside and watched her sleep. She sat out in the hallway and talked to visitors, nurses, doctors, strangers, patients, janitors, technicians, maintenance men, pizza delivery guys until she was exhausted, and I knew we had to have a plan.
On the scale of values, weeds and bills sank to an all time low, and time at the hospital rose right to the top. At my most helpless, I found the strongest sense of God's presence. In my weakness, my only weapon was my time, my patience, and my support. As a man, it was humbling, as a father, it was transforming.
I believe that while this illness can destroy a family, it also has the potential to build one too. I think the bottom line rests with Dad. Dad's job as the warrior is to lay down his wants and desires, to fight with himself and make the noblest sacrifice of his time so that his family might survive. In the end, it's one of the best things that I have ever done.'

-Joe, father of a childhood cancer survivor
© 2004 CureSearch

May your prayers be for all of the little children facing this disease, their treatment, relapse, and for those not with us anymore, may your thoughts and prayers be with their souls and their families.

Until Later,

Good Night and God Bless,

David and Diane

Wednesday, May 31, 2006 9:00 PM CDT

Hello All,

Summer is here, and new things are underway.

Emily has started breathing treatments since our Pneumonia scare and it seems to be helping. She will be going to the doctor on Friday, and hopefully that evaluation will tell us if she is out of the woods on this respiratory problem.

Her counts are on the rise, and there have been no fevers, so we are confident that we are moving in the right direction. Provided all continues to go well, we will start the next (and hopefully final) round of chemotherapy, and let her recover. After she recovers from that cycle (about 2 weeks), we will fly to New York for scans to tell us that all of this has worked, and she is still free of disease.

The girls started Summer Camp and love it. We are very cautious about the new environment, but it seems to be a loving Christian atmosphere, and they love it to the point they almost don’t want to come home. Of course, playground time is always more fun than going home and eating vegetables for dinner, so can you blame them?

We had a short holiday respite where we got some “family” things done, and the girls got to swim over Memorial Day and as you can see, they love every minute of it. We hope to resume their swim classes that we started last summer, but we have had a little more going on this year than last, so that part is still up in the air.

Other than that, it is business as usual, and we are thankful for the good news we got about little Hannah (her webpage link is the first link below). We just hope these miracles will continue throughout the pediatric cancer community and we can start hearing more good stories than bad.

Until Later,

Good Night and God Bless,

David and Diane

Friday, May 26, 2006 10:53 AM CDT

Dear Friends and Family,

Many apologies for the delay in updates, and while there are no problems right now, sometimes life gets in the way.

Well, school’s out for the summer, and we say goodbye to our favorite kindergarten teacher Mrs. Vitale who has watched over our little ones since their first day of school. In some ways it has been a long year and in others, it seems like just yesterday that we walked them into their new classroom in “big girl’s school”. However, Mrs. Vitale has continued to nurture our little ones and when Emily had to “drop out” she continued to think of her and keep her part of the class, even if she wasn’t there. She would always send activities and lessons home (even when we were in New York), and also constantly inquired about her on a personal, family level. For these things we will always be grateful and Mrs. Vitale has a special place in our hearts. The picture above was from a makeshift Birthday Party which they like to celebrate for kids whose birthdays are over the summer and don’t get to have it in the classroom because school is out.

Emily has been assessed over the past few weeks for her scholastic skills as well as speech and hearing, and we have sat on pins and needles waiting to see if she has been able to retain enough to advance to first grade with her sister, even after having missed half the school year due to her relapse in January. This week we got word, again from Mrs. Vitale, that she will be going on to first grade, and we couldn’t be happier.

The girls will be going to a Christian summer camp and while it’s not necessarily academic based for the summer, if we see the need, we will arrange for a tutor to go to the camp a few hours a week to get her up to speed. So, they will be entertained over the summer with activities more than just TV and snacks. Moreover, Grandma gets a rest after pulling overtime duty with Emily since we got back from New York.

Emily is recovering from the last round of chemo, but had developed a cough that was passed on to her from MaryGrace. After attending the birthday party at school, I saw many kids with the same cough and we waited and worried and while MaryGrace got better, Emily finally caught it.
While we knew its origins, when the doctor heard her lungs on Tuesday, it was off to the hospital for a chest x-ray. With Emily’s history of pneumonia, there is no sense waiting for things to get worse if they don’t have to. Her chest x-ray was free of pneumonia but showed bronchial inflammation so she started antibiotics at once, and has gotten better since. However, today’s visit showed she is still making a lot of noise in her lungs even though she isn’t coughing nearly as much. As a result, the good doctor is sending her to the ER for a breathing treatment, reassessment, and another chest x-ray so I guess we’ll go from there.

If all goes well, Emily will recover for another week, and start summer camp, then on the week of June 5th, she will start her fourth round of this chemo and this will hopefully be her last. Once we complete that cycle, we will let her recover again for two weeks, and then it’s off to New York for scans all over again. The most we can hope for are clear scans and to be able to begin any treatments that remain before us. We look forward to moving ahead again, and just pray that all of this upheaval for the last 5 months has done what it was supposed to.

In addition to Emily, we ask that you pray for little Hannah, Jenna, and Allie, as they face very difficult phases of their treatment right now. The relapse rates are horrendous with this disease and nobody is safe from it. We can just do all that is medically possible and pray for the rest. Also, we ask many prayers for all of the families of service people that are being remembered this weekend from wars past and present. We wish everyone a happy and safe holiday weekend, and until later,

Good Day and God Bless,

David and Diane

P.S. - UPDATE Saturday: Hannah's father called and all of the new lesions on her liver that came up in her MRI have turned out to be benign. Even in this horrible world, miracles do still happen. Praise God. Her website is the first link below.

Tuesday, May 9, 2006 9:03 PM CDT

Hello Friends and Family,

Another week has gone by of what we think of as “Normal “.

No trips to the hospital, no late night calls to the doctor, no fevers, and no outward problems of any sort. This is not to say we are not still living in the life of cancer, because we very much are, just with a little less stress.

Emily spent the week at home, getting her home schooling during the day, and playing with her sister in the afternoon. When the weekend came, Mommy and I worked in the yard and did things that we hear regular people do all the time. It’s hard for us to remember back that far, because just as life was getting into a routine after having twins and the huge responsibility that comes with it, Emily was diagnosed and life has been hectic ever since.

However, while we are far from out of the woods these days, we do take advantage of good days, and are trying to make the most of our home life while providing ample entertainment for the girls. After the yard work, we had a little Princess Pool Party in the front yard (and of course all I did was complain that the pool was going to kill the grass) and they were giddy. We wanted Emily to get all the water exposure she could, because come Monday, her port would be accessed again, and water probation until chemo was over.

So, come Monday, Emily started chemo and the hospital is in such a routine now that it moves much more quickly than before. It’s almost like they are waiting for her when she comes, and they are ready to go. Within hours, she is discharged and no worse for the wear. The only drawback is that she has gotten accustomed to a McDonald’s Happy Meal after her chemo, and we aren’t sure which is more toxic. But, during this time, calories are all that matters so if she’ll eat it, she gets it.

This week will be her hospital IV chemo and oral chemo at home, and once done, she only gets one more round in approximately 3 weeks. Then, we go to New York for scans and wait to hear what they recommend for her future treatment. We are staying very positive, and are thankful for her spirit and appetite thus far. Many children would be questioning “why me? “But as long as Emily has her favorite nurses, her family and her sister to play with, she questions nothing.

Also this week, Emily is being evaluated by several professional teachers about advancing to the next grade with her sister. The specialist has told us they are of the mindset to promote her, and just work extra hard on the areas she needs improvement, and we hope this is what the consensus will be. The fact she lost the better part of her hearing during the most formative part of her learning to speak is a tremendous disadvantage. However, she is rebounding wonderfully, and we look forward to the next school year.

Mommy has found a great summer camp program for the girls, and we hope this too will aid in Emily’s remedial process. While it is a Christian school they have a secular summer camp program that appears to be a bit more than just playing in a playground all day. We would prefer they both got a bit more education (and the Christian influence wouldn’t hurt either) and a little less playtime and it looks like this is our fit.

We ask that you all pray for the scores of little children affected with this disease, and related diseases as we have come across so much bad news recently, much over and above our own. Until later,

Good Night and God Bless,

David and Diane

Monday, May 1, 2006 9:04 PM CDT

Hello Everyone,

Emily is doing great and with our recent news about the status of her disease, we have to live each day grateful.

We carved out some time on Sunday and took the girls to the beach and even though they have been there a few times before, they were giddy with laughter as the waves rolled in across their feet. It was very windy, and the undercurrent was treacherous so no actual swimming, but they were clad in fully UV protected shirts and hats (special ordered by Mommy) and the waves and seashells were more than enough fun for their immediate needs.

Emily had a great doctor visit today, and her counts are rebounding wonderfully. I’ll spare you the actual numbers, but fact is they are good enough that our doctor is scheduling her next round of chemo and we are in hopes to get her underway soon.

After two more rounds of this less toxic chemo, we will travel to New York again and Emily will be evaluated for additional treatment options including a Neuroblastoma Vaccine and get another round of the standard scans and bone marrow tests. While the vaccine is state of the art medicine, we will have to be very open minded about it, as it is administered fairly frequently, and we don’t know how easy it is going to be to keep flying to New York almost on a weekly basis. So, while we will never forsake the best treatment options for Emily, we will seek out ways to do it while keeping her normalcy of life intact.

We are thankful for her good spirit and good health, and we pray for all the little children in this same fight. Please join us in this prayer as we say, Until later,

Good Night and God Bless,

David and Diane

Thursday, April 27, 2006 8:18 AM CDT

Hello Friends and Family,

Well at long last, results are in and Emily appears to be disease free.

Her CT was clear, MIBG showed a little something that was described as being of “ uncertain significance “, and most importantly her bone marrows and VMA tests were good (sorry for the medical abbreviations, but those of you in this know what they are) .

While we are most pleased with these findings, it invites a whole host of questions as to what our next steps are now. Do we do more chemo, start another cycle of Accutane, do we do a stem cell harvest, and is she classified as NED?

It seems she should be NED as her only actual disease was the tumor, and if the tumor was removed, and there is nothing else affected…but I guess it’s not always that simple.

NED (No Evident Disease) is a strange term. We all strive to get to that point because it lends to the idea that the disease is defeated or at least put at bay and we can begin living a semi-normal life and get back to a “home routine” as opposed to a “hospital routine”. However, once you achieve the badge of honor known as NED status, you start to live 3 months at a time until you hear different, and hopefully that is never. Then, in the horrible chance that you relapse, the badge you so honorably displayed as a symbol of victory is ripped off and you are sent back to the Neuroblastoma boot camp called “treatment”.

We are just happy there is no disease present, and Emily is happy and healthy. She is still getting homebound school until the summer then things are a bit up in the air. We are looking for a summer school for a few reasons. First and foremost, we want to get the burden off of Grandma and with both of us working now she needs a break. Second, we need to get Emily up to speed academically so they can begin first grade in the fall on an even keel. Lastly, they both deserve a little more fun and intellectual challenge than staying home all day playing games and watching SpongeBob Squarepants and the Disney channel all day.

So, we know that all these things will work themselves out and we look forward to more good reports from the doctors and hopefully minimal treatment remaining for Miss Emily.

We thank all of you for your prayers and concerns and ask that you continue to include Emily as well as all the other little children battling this horrible disease. So until later,

Good Day and God Bless,

David and Diane

P.S. - Update from 12:30 p.m. today: Dr. K called, and stated that Emily is in fact NED, PRAISES !

Sunday, April 23, 2006 9:04 PM CDT

Hello All,

Well, no news yet, so we are still holding our breath. We really have no reason to feel anything is wrong, but we may be a bit gun-shy after what we encountered in January (and the ensuing treatment) so we are trying to just sit tight until all is in.

The initial impressions were that all was fine, so we wait. However, there were other parents that we have seen who were there at the same time, with the same disease, getting the same scans, and they have results…hence our concern.

Emily completed this last round of chemo on Friday afternoon, and has been tolerating it relatively well. She has had a few bouts of nausea recently and we are addressing it with Zofran and I think we will just have to relax some of the eating requirements until this phase passes. While we want to keep her weight up, we can’t force food on her if she doesn’t want it. So again, we wait.

We hoped to take her over to school for her class photo this year with her sister, but no such luck. As it happens, her teacher called us and informed us that the chicken pox is still rampant in her class and there is no safe way for us to do that, so the class photo is out.

Emily is “off” this week so no chemo and just occasional doctor visits while we await results for what the future holds. We hope that her counts hold up, and she can just be in peace for the time. We are looking into summer camps for both girls, but the type of school weighs largely on what news we hear from the doctors regarding Emily’s future treatment. If she still has to continue treatment, she cannot go to a regular school with her central line and her continuous drop in counts. We have gone to great lengths to keep her free from germs and there’s no sense in changing now, so again, we just wait.

We visited a new church today, Grandma’s Church, that has been praying for Emily, and were made most welcome and they made quite a fuss over her. We hope to make a tour of all the different churches that have offered Emily up in prayer (having never known her) and allow them to put a face with the prayers. It’s amazing to see how many people reach out, and they don’t even know who for.

So, we patiently wait and pray for the best results, so we can breathe easy, and start planning the girls’ future. Thanks to all of you for your thoughts and prayers, and until later,

Good Night and God Bless,

David and Diane

Sunday, April 16, 2006 10:10 PM CDT

Hello Friends and Family,

We are back, and life is a whirlwind these days.

We went through all the scans in NY, and flew home Saturday night to get some sleep before the Easter Bunny came. We were awoken to the sound of two squealing girls exclaiming that the Easter Bunny had come and that we had to get up at once, so we did.

After we uncovered all the Easter Bunny’s goodies, we got ready for church and it was a full house. The girls looked great and it was refreshing to get that spiritual re-charge after this stressful trip.

The scans went great, and as of today, we have been told that the initial results are fine. There are additional tests that were done that we will not have results until later this week, so we are holding the celebrations until we hear about them as well. However, if we are to measure things by how she looks / acts, she is fine. She has gained back all the weight she lost during her initial surgery and chemo rounds and has an appetite like no other.

So, we start chemo Monday morning at our home hospital and it is a five day process that she seems to tolerate very well. Thank goodness she likes going to the doctor, because this is done out-patient and she has to go in every day for the whole week.

Hopefully we will have answers soon about Emily’s progress as it pertains to this last series of scans, and will start making a roadmap towards a normal summer for her and her sister.

We ask for prayers for her as well as Baby Hannah who has gotten what may be alarming news in her last series of scans and will be addressed this week. All our thoughts and prayers go out to all our little friends from around the country including Emily, Hannah, Jenna, Alina, Jeremy, Allie, Emily W., and many others.

They all suffer the same disease and the same tough road and we just hope that someone comes through with an advancement that will alleviate the treatment process and give them better quality of life until we find a cure.

So until later,

Good Night and God Bless,

David and Diane

Wednesday, April 12, 2006 9:17 AM CDT

Hello Friends and Family,

This is a very short update as we are leaving in ten minutes for the airport.

We are hoping and praying for good scan results and good news regarding Emily’s treatment plan from this point forward.

We will not be updating again until we get back, so no more news until Monday. This is probably just as well as we most likely won’t have results until that time anyway.

We ask that in addition to your concerns and prayers for Emily that you include little Hannah in your prayers this Easter and Passover season. It seems she too is suffering a recent setback and it is taxing on everyone, physically and emotionally. You can see her at http://www2.caringbridge.org/fl/hannahbannana/

Many thanks to all for your thoughts and prayers, Happy Easter and Happy Passover, and until later,

Good Day and God Bless

David and Diane

Monday, April 10, 2006 5:31 AM CDT

Hello Friends and Family,

It has been relatively uneventful here, but that is about to change as we prepare to make our quarterly flight to Sloan Kettering in New York. There is no school this week, so at least they won’t miss out on their education during this visit.

Last week, Emily attended the “Hyundai Hope on Wheels” event at our home hospital and it was a “nice” visit to the hospital. The local Hyundai dealers presented a check to our doctor who spoke as the Medical Director of Pediatric Oncology for the hospital and all the little cancer kids got to place their painted handprints on the side of the SUV. It was a worthwhile event that takes place this time of year all over the country.

Emily’s counts continue to climb, and we go to the doctor today to see just how much. Of course when we saw the doctors at the event, they all say the same thing: “she looks great, look at her running around”. Problem is, she has been bottomed out in the past and needed to be admitted to the hospital, and ran around the same way. In fact, I can recollect times when she has had pneumonia and the only thing keeping her in the room was the length of her IV tubing.

We are hoping this round of scans is a reversal of the news we got on our last round (in January), and that what poor little Emily has been through these past 3 months has paid off. We are praying that she continues to heal from her surgery on the inside, and that a lot of the post operative conditions that were present have healed themselves. We also pray that there is no disease ANYWHERE!

We will also find out on this trip just how many more rounds of chemo she will get, and what treatment options are available for the future (ie. vaccines, stem cell harvest, etc.). These tidbits of news will allow us to think about a timeline for her returning to life as a normal kid again. Normal means no more port, no more fear of infections, and her hair growing back. These are all little things that we had just 4 short months ago, and never expected to contend with again, but we deal with it and we march forward.

So please pray for good results for Miss Emily, and all the little children who are in this fight with her, and know that with prayer all things are possible. So, until later,

Good Day and God Bless,

David and Diane

Tuesday, April 4, 2006 9:01 AM CDT

Hello All,

Hopefully, the dreaded chicken-pox has passed us by.

In the name of caution, MaryGrace stayed with Grandma for the week, and no new pox surfaced and the ones she had went away. So we were left with the idea that either (a) she never had the chicken-pox, or (b) because she was vaccinated, it was an ultra-mild case. In either event, she was able to come back home from her quarantine with Grandma on this past Sunday.

MaryGrace got home just in time to eat something, then off we went to see Disney on Ice’s Finding Nemo. The atmosphere of these events has always excited the girls, but by intermission, they seemed to be more interested in the toys being sold than the show itself. I guess the Disney people know what they are doing when it comes to merchandising.

Emily’s blood work is gradually improving, and she does not need transfusions of blood products anymore, this is a good thing. We are hoping she is fully recovered before we go to New York next week for her scans. There is still a question as to how many rounds of this new chemo she is going to get, but according to Sloan Kettering, we believed it to be one more. However, in one of the e-mails they sent to our doctors here, they said 1–4 rounds, so I guess we’ll clear that up when we go there. While we would love to be done with this for Emily’s sake, we would also like to get the maximum benefit for her in getting rid of this disease for good. So if it means 3 more rounds, so be it.

We are looking into Summer Camps of the academic sort for the girls in hopes that we can entertain them over the summer and get Emily up to par for all the education she’s missed since re-starting treatment. While it is only kindergarten they are in, we don’t want to risk Emily falling behind her sister in school, so this will be a good opportunity to get her back on track.

Emily goes to the doctor today, and we are hoping for more good news regarding her recovery from this last round of chemo. Thanks to all of you for your thoughts and prayers, and we continue to lift Emily up in prayer as well as all the other little children affected with this and related diseases. So until later,

Good Day and God Bless,

David and Diane

P.S. – Go Gators!

Sunday, March 26, 2006 7:08 AM CST

Hi everyone,

While emptying MaryGrace’s book bag, on Wednesday, I found the dreaded
letter....."Your child has been exposed to chickenpox". I immediately FREAKED
OUT, as Emily had just finished her 1st day of Irinotecan / Temador. I called their
teacher, who told me a little girl in their class, had complained of mosquito bites the day before, and called in sick on Wednesday with chickenpox. MaryGrace proceeded to tell me, that Rebecca (the little girl in question) had shown her the "mosquito bites", and that Rebecca sits on the letter "E" on the letter rug (MaryGrace sits on the letter "D"!)

OK, close contact confirmed. I then called our Pedi-Onc, who was going to
call Infectious Disease, to see what they should do. After a thorough
examination of every inch of MaryGrace's skin, I found 3 small bumps that could be bites, or anything. Even as of today, our pediatrician couldn't say for sure
and they are too early to culture. I figured because she had the chickenpox
vaccine, that she should be OK, but I don’t know.

We were due for chemo day 2, on Thursday, so we kept them separated with
MaryGrace in our living room, and Emily in our den. (Try and explain that to two 5 ½ year olds, that love to play together). After she finished her chemo, we
got 2 shots of VZIG, the immunoglobin for chickenpox. Today, MaryGrace got
to go to a special treat, a week at Grandmas, and no school. However, with Grandma gone, that means there is nobody to stay home with Emily this week. So once again, Mommy is up to bat, and has to sacrifice work this week while we wait to see if MaryGrace is in fact infected with chickenpox. While we would all like a week off work, not under these circumstances. Especially since with all the time off since Emily’s setback in January, it may actually even be a week off with no pay…bummer.

Sunday is day 4 of Emily’s chemo cycle and things are going quite well (we say this at the risk of jinxing ourselves), but with all we have on our plates, we are just thankful to not have the horrible side effects that can come with these drugs.

Now we just pray this pox scare goes away, and we can get back to the business at hand, Emily’s treatment and getting back to a normal life (yeah right). So until later,

Good Day and God Bless

David and Diane

Thursday, March 23, 2006 10:44 PM CST

Hello Friends and Family,

Today is the day!

Emily started her next round of chemo, and while it is a mild one (?) She did great.
We are going to wait to see if there are side effects, but as of now, she is as if she never got anything, and it’s nice to see she is in such good spirits.

Emily has a teacher that comes to the house now and that works out for everyone involved. She gets an education, and she knows that the night before the teacher is coming she has to clean up her playroom. See, we all win.

However, we have encountered a bit of a dilemma. Emily’s sister, MaryGrace came home from school with a note saying that she has been exposed to Chicken Pox, and while that is a normal expectation with most kids, and you vaccinate appropriately, what this could do to Emily is devastating. Diane immediately called our doctors here and we are in the process of arranging for an immune boosting injection that will hopefully keep the pox at bay and Emily out of the hospital.

Tonight the elementary school had an art show that Daddy and MaryGrace went to, and it was a good time to appreciate the school as well as our little girl’s artwork. She was very shy but it was nice to interact with her and see her in her natural environment. Then when we got home, she started scratching and complained during her bath that she had “itchies” on her back and legs.

From this point forward, we tried to keep the girls separate and if you have ever had trouble with kids; try keeping twins apart at bedtime. Nearly impossible! Needless to say, it was trying and we have to wait to see how she could have gotten affected so quickly, as she may have just been using this as an attention getter to be in the spotlight, but we cannot afford any chances of infecting Emily.

So, we sleep tonight, knowing Emily got her IV chemo without incident, and took her oral chemo (3 pills) like a champ and is sleeping away the night. Tomorrow, we do it again, and over the weekend, we do it on the pediatric floor until we complete her cycle of five days. If it all goes as well as today, we are in perfect shape for our trip to New York.

Until later, we ask for prayers for Emily and all our little friends Jenna, Hannah, Sydney, Jeremy, Nathan, Sean, and all the other little kiddos who did nothing to deserve this life they are living, but continue to prove they are much stronger than any of us.

Good Night and God Bless,

David and Diane

Sunday, March 19, 2006 9:13 PM CST

Hello Everyone,

Once again, there’s not a lot to update on, but maybe that’s a good thing.

We are scheduled to start Emily’s next chemotherapy tomorrow which consists of one minor infusion and one oral pill (for those of you in the know irinotechan and temador).

Her platelets are an ongoing problem as they must be at least 75 to begin chemo but her levels have been lingering around 30 – 35 and that will not do for starting treatment. So tomorrow will tell the tale as to whether she is recovering and if the platelets will be high enough. If not, we wait. Mommy feels that she has recovered, and Daddy is still hesitant, but since we don’t have a home CBC kit, we don’t know anything until tomorrow morning.

We had a wonderful weekend of family togetherness, and on Saturday, the girls sat in the backyard and played hand-clapping games like “Cinderella dressed in yellow” from the old days and blew bubbles and just did something entertaining that didn’t involve TV.

Tomorrow’s blood draw will tell us what our schedule is and with any luck, Emily will begin her 3rd round of chemotherapy. We trust that this will go okay, and while she recovers from that round, we will prepare to go back to New York. We will be going there for scans, and hope that they tell us that her body is free from disease from head to toe. Then, when we come home, we will resume her chemo treatments to hopefully kill off whatever is microscopically lingering in her body.

For now we just hope and pray for good health for Emily and the ability to start treatment Monday, and if not, we go from there. We continue to lift up all the little children we know (and those we don’t) in prayer for relief from this horrible disease. So until later,

Good Night and God Bless,

David and Diane

Tuesday, March 14, 2006 10:20 AM CST

Hello Friends and Family,

Not much new but Emily is doing better and most of all, no fever this time! However, she is still gobbling up blood products and we are curious when this will heal itself.

As of Friday, her ANC was up to 2600 and we were allowed to stop giving her Neupogen (to stimulate the production of white cells to help protect her health and immune system). But at the same time, she needed platelets, and so we did the trot across the street to Pediatric Ambulatory to get recharged for the weekend. She has needed either red blood or platelets every other day since we left the hospital. It is believed that she is not producing these on her own yet as a result of her bone marrow being so beat up from all the radiation and chemo she has gotten, and so we have to let her heal at her body’s own pace.

Monday, we had a “changing of the guard” and Mommy took Emily to the doctor’s office. Daddy went back to work in hopes of holding onto the job he had for one month before Emily’s setback. She did fine, but again needed blood so it made for a long day for everyone involved. When I returned to work, the wonderful folks here at Radio Disney Vanessa, Gilbert, and Carla assembled a beautiful basket of toys and goodies for Emily (and MaryGrace) that was sitting on my desk when I arrived. We extend many thanks for their concern and prayers for our little girl and for the compassion they have shown me in holding my position during this difficult time.

This week will just be filled with the every-other-day doctor visits and we await Emily’s system to bounce back so that we can begin her next round of chemo. While they did tell us this cycle will be much milder than what she has gotten in the past, we still cannot start until she has recovered from the last round(s). Then, as we said before, in April we go up for scans and I think we’ll all breathe easier after that visit. Until then, we just pray for her continued healing and for all the other little children fighting their battles along side Miss Emily. So, until later,

Good Day and God Bless,

David and Diane

Wednesday, March 8, 2006 6:18 AM CST

Hello Everyone,

There’s not much new to report on Miss Emily’s progress. Since being released from the hospital, we’ve just been overseeing her counts, and keeping her isolated so as not to contract anything while she is in such an immune suppressed state.

Last Friday, she needed platelets, so after our visit with the doctors in the clinic we headed across the street to the hospital. It wound up being an all day affair, but we were able to go into the weekend with peace of mind knowing that she got her recharge of much needed blood products.

We spent the weekend anticipating Emily’s neutropenic fever, but it never came. Traditionally, she has always gotten a fever the weekend that follows the completion of a chemo cycle, and we begin the late night trek to the ER and spend a five day stay in the hospital until infections are ruled out as a cause of the fever. But not this time, in fact she is 3-4 days past due and this means one of two things. Either it is still to come and she’s just off schedule, or she has already begun recovering from the chemo and just didn’t get a fever. We have heard of kids who don’t get fevers, but have never had such luck with Emily. Well, first time for everything. It seems just as you learn how to play the game, they change all the rules.

Monday, Emily needed a blood transfusion, and again, an entire day in the confines of Joe DiMaggio Children’s Hospital arriving home at 7:00 p.m. Now, while she had a drug induced nap of several hours, Daddy was exhausted and Mommy wasn’t much better after having worked all day so it was an early night.

Today we go in for blood work and this may tell a lot. We are curious if Emily is recovering, or if she just hasn’t bottomed out yet on her counts. Whatever the case we have no control over it, but hopefully she is rebounding on her own (with a little help of blood products from time to time) and we can head home after the blood work. If not, and she needs something from the blood bank, I am going to insist on a paycheck if they make me sit there all day again.

So, for now we just hope for a quick recovery and after a little “healthy” rest period, we will begin the next round of chemo which is much milder. Depending on how these cycles go, she will get anywhere from 2 – 4 rounds. In April we fly back to New York for a series of scans and after all Emily has been through these past two months they had better be clean as a whistle. We truly cannot envision anything surviving the barrage of chemicals and radiation that has been pumped through her little body and we just pray it has all done its job and eliminated this monster once again. So, until later,

Good Day and God Bless,

David and Diane

Wednesday, March 1, 2006 10:07 AM CST

Hello Friends and Family,

Today the sky is a little bluer, the air smells sweeter, and the birds are singing just a little louder because today we are home. Even though we are old pros at the hospital stays, and the doctors and nurses are great, it always feels so good to get back home. It was really nice to see all our old friends at Joe DiMaggio Children’s Hospital, but everyone concerned would have preferred the visit be under different circumstances.

Emily completed another cycle of chemotherapy and not one bout of nausea the whole week. We attribute this to a very aggressive, around-the-clock anti-nausea medicine regimen, and it appears to have paid off. She tolerated the treatment great, and at the very end, her red count took a little dip, so we got blood before we left. Aside from this though, all went good, and we have completed half of her chemo protocol. The next two cycles are a mild infusion combined with an oral chemotherapy and should be a lot less toxic than this one was.

The hardest part of this new lifestyle for Emily (aside from the treatment itself of course) was this morning when we took MaryGrace to school. We got dressed and went to school just like always only when we got there, MaryGrace got out and walked to class, and Emily had to stay in the car. She didn’t seem to get too upset at the time, but she misses her sister terribly. After all, she was away for six weeks, and then came home and two days later was back in the hospital for another week. So naturally, they miss each other but Emily is making the most of her time at home with Daddy and Grandma.

We have an appointment to go to the clinic Friday, and see how her counts are holding up. We expect them to go down because her poor little body has been pretty beat up these past few weeks. Between the first chemo, the 20 rounds of radiation, now another chemo, it’s inevitable that her system takes a little hit from it all. But you would never know from her demeanor, or her appetite.

So for now, we just sit back and wait for her body to recover and hope she doesn’t get a fever this weekend (even though it’s almost guaranteed she will) as we prepare for the next cycle of chemo in about two weeks. We continue to ask for thoughts and prayers for Emily’s health as she tackles this disease once again. So until later,

Good Day and God Bless,

David and Diane

Thursday, February 23, 2006 8:51 AM CST

Good Morning Everyone,

Well, we are home sweet home, but life is no less hectic here. We flew in Tuesday night, and Wednesday morning met with our doctors here about beginning treatment. Be careful what you wish for, you just may get it…we are starting this morning. In about thirty minutes, we will start Emily’s second round of chemo and will be residing in the hospital for the next five days. With the around-the-clock fluids, we felt it best to just do this inpatient. After all, the doctors can see her every day, and if heaven forbid there is a problem of any sort, we are under the medical umbrella and won’t have to drive to the ER in the middle of the night.

Our trip home was phenomenal due to the fine folks at Corporate Angels who flew us home in a private Gulfstream G-400 Jet. When we got on board, Emily had her own dining table and leather recliner ready and a huge basket of candy and snacks that would tempt any kid. About a half hour into the flight, the flight attendant prepared chicken fingers, rosemary steak potatoes, and macaroni and cheese. Well, the chicken fingers were not the identically sized variety they serve at McDonald’s so they were pushed aside, and as for the rosemary potatoes, well Daddy liked them. So, she ended up dining on a big bowl of Mac & cheese while Daddy had chardonnay & cheese. A good time was had by all.

Well, we are off to Joe DiMaggio’s so wish us luck as we start this next round, and please continue to pray for all the little ones in the same fight as we. We wish the best for little Jenna, Sydney, Jeremy, Hannah, and all the rest of our extended family. Until later,

Good Day and God Bless,

David and Diane

Sunday, February 19, 2006 11:16 PM CST

Hello Friends and Family,

We had a great family weekend, and Emily could not have been happier too see her mother and sister.

On Saturday we went to see Beauty and the Beast, and all of us were impressed. We don’t have permission to use his name, but the theater manger put us in seats that we could see the moles on the actor’s faces. The show was incredible, and we once again saw the good that comes out in people when they see or hear of this tragic disease.

On Monday, Emily gets her final radiation treatments, one in the morning, and one in the afternoon. At the same time, Mommy and MaryGrace have to fly home midday and so they will be leaving which makes for a bittersweet day. While we finish radiation, we prepare for our own trip home.

We have a set appointment with our doctors at home, and we are to get with them on Wednesday after we get home on Tuesday night. Hopefully, we will then begin chemo ASAP and get back into the “hospital” mode and continue to attack this beast called Neuroblastoma.

Once we get the medical stuff behind us, then we address how Emily’s education will go. While she could technically go back to school, we have opted for her to not go, as she has, and will have, a central line that is a big risk for infection and injury. Even in a best case scenario, by the time her chemo cycles are done and her line could come out, school will be over for this year. Therefore, we will contact the school board to find out about private “in-home” tutoring so that she doesn’t fall behind. We have every intention of her starting first grade on schedule with her sister and her current classmates.

Update Monday February 20, 2006 12:15 p.m.EST

Well, Mommy and MaryGrace have gone, and it’s a lonely feeling watching them go as we stay behind. However, there is comfort in knowing that tomorrow we will be leaving as well, and we will all be under one roof, that roof being home.

In two hours, Emily will undergo her twentieth and FINAL radiation treatment, and I can’t wait. Then, we will go back upstairs and begin our farewell tour. By the time Emily says goodbye to all the nurses, doctors, child life specialists, and other kids, we’ll probably get out around 5:00 p.m.

As awful as it is being away from home this long (6 weeks tomorrow) everyone here has been so nice and helpful from the staff here at the Ronald McDonald house, to the nurses & doctors, the entire radiation department, and all the other parents who walk this treacherous journey with us everyday. You do begin to become a part of a “family” of sorts here, and you meet interesting people whose stories are very often the same but different. It’s amazing that the scores of kids here with the exact same disease, but yet no two are the same. The treatments are different, the drug combinations are different, and the children’s reactions are different.

The trick is walking that fine line to maintain your sanity. While you’re talking with another family you can be compassionate and interested, but yet you cannot allow yourself to get drawn into a depressed state because their child isn’t responding to a therapy that you’re getting for your child. You have to compartmentalize these different feelings and know with an unwavering certainty that no two children are the same.

As parents of a cancer child you constantly want to find a “reason” or an “answer” to rationalize all the madness going on around you, but peace only comes when you face the fact, that you may never get a reason or an answer. The only thing that you have to cling to is faith, an intangible belief that things are going to work out. This faith is what allows us as parents to go into a room with the doctor who tells us that our daughter has relapsed from this horrible disease after over two years of treatment, and walk out of that room with a smile and play with her for hours on end never letting on just how serious things are.

So, many prayers for all the children (and their parents) battling this disease, and may they all have the faith to not just “make the journey” but do it with a smile on their face and love in their heart. Until later,

Good Day and God Bless,

David and Diane

Monday, February 13, 2006 9:58 PM CST

Hello Everyone,

Many apologies for the delay in updates, but on-line difficulties persist, and my only way to get on is to travel outside the room, something I cannot easily do.

Emily seems to have developed some severe separation anxiety and if I leave the room in search of a good wi-fi signal, she becomes completely frightened. My other option is to go to the computer room here at the Ronald McDonald House, but that is a part of the playroom and we are just not comfortable exposing her to all those other kids and their germs.

In the name of problem solving, I bought some two-way radios, and if I have to go downstairs for something, I am just the press of a button away. This has helped, but she still prefers I stay in the room.

As expected, we were discharged Wednesday, oh how nice. Thursday was an easy day of just our double radiation, and we filled the in between time with school, and crafts. Friday, we had our first radiation, and then went up to the ninth floor for a blood draw, and see how her numbers were holding up. Amazingly her ANC shot up from 1.5 to 7.4 so on paper she was the picture of health, and we were given the okay to do whatever we want over the weekend. Yeah, very funny! This weekend was probably the best Emily has felt since we started treatment, and we had to spend the whole weekend in the room getting ready for the Blizzard of ’06.

Those of you that remember know that we were here for the big blizzard last year too, and now we had to hunker down for this year’s version. We can’t win, we have hurricanes in the summer to prepare for, and blizzards in the winter to give us a good dose of cabin fever.

Emily’s radiation was increased, and instead of getting 14 treatments, it is now 20, so we will not be done until next Monday. However, the great news is Mommy’s coming!
She will fly up Friday after work, and she is bringing our other little bundle of joy, MaryGrace. For the first time in about five weeks, the girls will get to play together. Normally, we all come here and leave here together, but considering the circumstances behind this visit, it wasn’t going to be a fun family getaway. Since Emily doesn’t have radiation on the weekend, they are free to carry on like sisters should.

Tomorrow is radiation in the morning, a CT scan around lunchtime, and the second radiation in the afternoon. We asked that when we get the post-operative CT scan of her abdomen that they include her head as well, as they always have. However, the doctor came back with a preference of doing an MRI. So, on Thursday we will have a brain MRI to assure us we have nothing more to fear before we head home and resume her chemo regimen there.

Emily has begun losing her hair, and I don’t know who is more upset, she or I. I sat her down and talked about it and showed her pictures of herself with no hair and she just looked away and wanted to know if she could watch cartoons. So rather than push the issue, I decided to make an event of it, and told her we would go to the hair salon to get it cut nice (depending on how much she loses) when it falls out. While she still doesn’t really get it, she at least is talking about it and telling all the nurses that her hair is “falling down” and Daddy is taking her for a haircut. Mind you, this is the same child who five weeks after having her port placed is still asking me why she has a port, and “why did the doctor cut my tummy?” So, I hope the kindergarten theory of repetition will eventually make this all sink in so she has peace with it all.

We continue to extend many thoughts and prayers to all the little children in various phases of treatment including Jenna, Hannah, Sydney, and all the rest. At the same time, we are thankful for the prayers for Emily and her healing, and trust that this extended stay away from home has been an integral part of that healing. Until later,

Good Night and God Bless.

David and Diane

Wednesday, February 8, 2006 5:47 AM CST

Hello Friends and Family,

Well, let’s review today’s checklist for Miss Emily. No more fevers, check. No cultures growing in the blood drawn Saturday night during our visit in Urgent Care, check. Blood counts improved well enough to release Emily today, check,(or at least let’s hope so).

As of 5:04 this morning, Emily’s blood work looks great. Her hemoglobin is good, white count is normal for the first time since last week, and her ANC jumped from a 0.1 (which is what it’s been since last Friday) to a whopping 1.5 today. This is an indicator that her marrow is producing the necessary neutrophils (and assumedly other products) for her system to properly function, and she is recovering from the chemotherapy.

So, while I am not a doctor, I am quite certain this is our “get out of jail free” card. The floor here is not bad, but when you look at going to your room at the Ronald McDonald House as a big improvement, enough said. Also I think it will provide a little better environment for Emily as well. We don’t have to be so conscientious about other kids and their germs (because we stay in our room) hopefully, she will be disconnected from all her “tubies” and won’t have to watch every step she takes, and we can go for walks or run errands anytime we feel.

Right now for 23 hours a day I have to sit and take turns staring at Emily, her IV pumps, and SpongeBob, then start the rotation all over again. The remaining one hour per day, some nice soul from Child Life comes and plays games with Emily and allows me to run back to the room at Ronald McDonald, take a shower, grab some clothes for the two of us pick up some snacks for Emily, and get back. For those of you that have been here, after you subtract the time it takes to walk there and back, and the time it takes to pay for something in the store, it allows you about 30 seconds to shower and dress and be on your way. But you know what, Thank God for Child Life Services in this hospital or I wouldn’t even have that. In summary, I would be staring around the room, smelly, Emily would have no snacks, and I would probably go mental not leaving the room since Saturday night. What’s more, when the doctors were pushing for Emily to do her radiation without anesthesia (which was a scary proposition for us, considering how intense the therapy is) Child Life stepped in and came down with us, and encouraged Emily to be a big girl, and she went through her simulation (over an hour of lying still) wonderfully. So hats off to Child Life as we never took advantage of what it was they had to provide in this facility, and they are great.

Emily has completed her first two rounds of radiation and if all continues to go well, we will go every day twice a day until next Wednesday (whether we are still inpatient or not). After that, we will get scanned and see if this disease is out of there, and then pack our bags and head home to Joe DiMaggio Children’s Hospital for her remaining three rounds of chemotherapy.

So lets hope little Emily gets parole today, and she will be in ice cream heaven tonight in her own bed (sort of her own) with no IV and no doctors & nurses to wake her. As always, we are mindful of others traveling this road with us, and lift up prayers for healing for all of them, while we give thanks for the progress Emily has made thus far. Until later,

Good Day and God Bless,

David and Diane

Sunday, February 5, 2006 10:45 PM CST

Hello Everyone,

We once again visit the ugly side of this disease, not to imply that there is a pretty side to see, but some old harsh memories have been revived as little Miss Emily continues to battle on.

On Friday, Emily’s blood levels and immune system numbers were very low and precautions kicked into high gear. Out came the masks for her to wear, we started on Neupogen injections to boost her white cells, and toughest of all, no more playroom. She’s good about the mask, but the shots are quite painful, and then to top it off by saying all this and telling her no more visits to the playroom, she’s none too happy.

Usually, blood work numbers like this are a precursor to a late night trip to the ER with a fever, so I spent the evening organizing things to prepare for such a run. As luck would have it, she never got a fever.

So, we have a weekend with no trips to the hospital, or any real plans to keep, and so we just enjoyed a day together while I did laundry and cleaning and she watched Nickelodeon until my ears were bleeding from listening to the theme song from Sponge Bob Square pants. Some may call this “bonding time”, but after a whole day of cartoons, I felt my brain turning to mush. Later we ran errands and since she was feeling good, we went back to the salon for another beauty treatment, but this time it was just a shampoo and blow dry.

After a full day of togetherness, she settled into her bed and I began to peruse the takeout menus for the area, playing a little culinary geography while trying to make a decision. Then, after I narrowed it down to a few, I looked over at Emily ready to go to sleep at around 8:30, and she asked if we were going to do “thermometer” before she went to sleep. So I opted to indulge her even though I could see she was in tip-top shape, and I got the thermometer. As soon as she put it in her mouth, the numbers shot up like gas prices during hurricane season, and they stopped at about 101.7. I didn’t trust the drugstore thermometer, so I let it sit, and did it again only to get a 102.1, and all the while Emily is giggling at the fun thermometer game she was playing.

So, my anxiety about going to the hospital wasn’t unfounded, just early, and off we went. Hey, at least the laundry was done and the room was clean, so all I had to do was load her up and start walking. We got in a little after 9:00 p.m. and the usual routine begins, the IV antibiotics get started, blood work is drawn, and they promise to get you a room right away. At 3:30 a.m. we were wheeled up to our luxury suite on the 9th Floor, and we aren’t leaving anytime soon.

Emily got a blood transfusion early this morning, and the doctors have determined that our stay remains until (a) at least 3 days pass with no cultures growing in her blood, (b) no more fevers, and (c) her blood counts bounce back to acceptable levels. Meanwhile, we are slated to begin radiation tomorrow, and the docs feel if she looks as good as she has been, they will not interrupt the schedule. They will however closely monitor her red blood count, and if she drops down at all during this radiation period, they will continue to recharge her batteries with transfusions.

Well in keeping with our old tradition of being in the hospital for every holiday, and major event, we can chalk up two more. The Super Bowl came and went and unless they simulcast it on Cartoon Network there was no chance of me watching it. And we will still be up here doing radiation over Valentine’s Day, so the record continues to go unbroken.

Once again we call on all of you to put your prayers forward for another little one we have come to know, little Alina. She too is from South Florida and has been battling Neuroblastoma for a little over a year. She completed all of her treatment here in New York, and has been no evidence of disease for some time. But Friday she awoke with a lot of leg pain and her parents fear the worst. She is scheduled to undergo the appropriate scans Monday and we pray they do not have to enter the world of relapse as we have now had to.

Please lift up Emily, Alina, Hannah, Jenna, Sydney and all the little children who have to deal with this disease every day, and keep them all in your prayers. Until later,

Good Night and God Bless,

David and Diane

Thursday, February 2, 2006 7:47 AM CST

Hello Friends and Family,

We are entering into an ugly time, and according to the doctors, it’s going to get worse before it gets better. Emily’s blood counts (and immune system) are dropping pretty quickly now and the nausea is becoming more and more prevalent.

The only redeeming part of it all is that after she gets sick, she seems to be fine, but keeping food in her is becoming a challenge. Emily has always had an acute sense of smell, but now that sense is causing her great distress as anything with too strong a smell sets her off.

As a result, her diet consists of, oh, uh, say ……anything she wants. I mean, at breakfast, are Cheetos really any worse than today’s breakfast cereals? Is it really bad to eat Chicken McNuggets every single night for dinner? Our philosophy is “it’s calories and we need to keep her weight up”. After all, we don’t have our friend the g-tube to make up for what she doesn’t eat, so we really have to manage her food (and their corresponding smells).

Almost exponentially, in relation to Emily’s counts going down, her list of medications is going up. She now has begun taking pills whole now and is doing quite well at it. The doctor said yesterday that she should start an upturn in the middle of next week, but from now to then, we will have to return to some old behaviors. We are loading up on masks for Emily and I have had to explain to her that we cannot go into the playroom anymore (as the playrooms are filled with other kid’s germs). She is not happy about having to wear the mask, but I told her in crowded areas, we will both wear one.

However, this sharing in hardships is going to reach a difficult level if she loses her hair! We’ll cross that bridge when we come to it. So, until later,

Good Day and God Bless,

David and Diane

Wednesday, February 1, 2006 6:52 AM CST

Hello Everybody,

We are in a holding pattern right now, and while it’s a little boring, it may be a good thing.

Emily got her last round of chemotherapy on Saturday, again, without incident and we went back to the room with IV fluids running for the whole weekend. That was needed to protect her organs from the toxic chemo, but it had its practical downside. Her visits to the little girl’s room were most frequent and as a result we really couldn’t go anywhere too far away. Hey, let that be the worst side effect we see, and I’ll call it a success.

Speaking of side effects, we were told that 7-10 days after the start of the chemotherapy we would start to notice them, so that means right now. Anything from nausea, to mouth sores, to fatigue, to lower blood counts is to be expected. So far, she has had very little nausea, but clearly gets worn out by day’s end, and if I don’t pick up on it, I wind up wondering why she is being so difficult. Fact is, she’s just exhausted so again, we don’t travel too far away from home so she can nap as needed. Maintaining her strength and nutrition are of utmost importance to us, so however much she needs to sleep, she will. In addition, to get her to eat, she needs to be well rested so that’s one more reason to provide that sleep time for her.

All this week is just recovery for Emily and we are slated to begin Radiation therapy on next Monday. Hopefully we will be past the worst of the side effects of the chemo before her poor little body gets zapped twice a day with radiation, and she suffers the consequences of that. It seems ugly, and seems even more upsetting because we have been “off treatment” for so long that it’s hard to see her so compromised. I guess it goes under the heading “necessary evils “.

Our days are pretty much spent in the hospital or in the room, so anyone who wants to send Emily a card or note can do so at:

Emily Adamson c/o Ronald McDonald House of New York
405 East 73rd Street New York, NY 10021. She loves getting (and opening) mail, and it would give her much happiness and strength to get through this tough time.

We Thank God for the good results for little Hannah’s spinal taps, and hope that they can continue on her treatment plan without interruption. What’s more we continue to pray for all the little children affected by this horrible disease as we meet more and more Neuroblastoma families, and witness the grief this places on them.

So, until later, Good Day and God Bless,

David and Diane

Friday, January 27, 2006 9:05 PM CST

Hello All,

Emily has completed day 4 of a 5 day chemotherapy regimen, and if I didn’t watch them hang the medicine myself, I would swear she was getting nothing. She has gotten her chemo while playing in the playroom, going to school, or even while eating snacks, go figure.

The doctor told us that it was a lower dose chemo, but still you would think it would slow her down at least a little. However, she hasn’t missed a beat, and is taking on the final day tomorrow and she will be done, at least this round.

Emily had a “fitting” of sorts for beginning her radiation treatment, and in that they have to make a mold for her to lay in while she gets the radiation and they have to make marks to realign the machines each day for her treatment. The markers are in permanent ink (tattoos) and I am sure one day we’ll have to explain all that, but there’s nothing more important than attacking this recurring disease and there will be a whole lifetime to explain things like this.

Normally, this is a lengthy procedure and little kids get anesthesia for it, but scheduling conflicts and misunderstandings precluded that for Miss Emily. As a result, she had to lie perfectly still for almost an hour, and then watch them come at her with a needle to place the marker tattoos. She did it all, and never moved, and a combination of caring techs, experienced nurses, and a bribe of “McDonald’s” for dinner, got her through.

The toughest part of this (aside from doing it without Diane by my side at the doctor and at home) is the psychological element for Emily. She doesn’t know why she has this big incision down her tummy because her tummy doesn’t hurt. She doesn’t know why we have to go get medicine (chemo) every day because she isn’t sick. And she doesn’t know why all the other kids don’t have hair, and wants to know if “they’re” sick too.

She’s at that tough age that she has many questions, but can’t comprehend the answers, and in a case of cancer treatment, it gets complicated. You don’t want to just give her a fairy tale or a story just to alleviate the situation because you may have to eat the words later, but you do have to answer her and it better be a satisfactory answer or you’ll get twenty more.

The other day she asked why some of the restaurants were open when we come home from the hospital, but they’re not open when we go to the hospital. And as any parent pushing a stroller in New York City in twenty something degree weather with 50 pounds of gear and eleven hours in the hospital said “I don’t know”. She promptly followed my brush off of an answer with, “Well stop and think about it, and tell me”! Now, where did she learn that? So, in learning how to break all this down to her, I am reminded of the old saying, “How do you eat an elephant?” one bite at a time. This is how we deal with this scenario for now, and as long as she’s happy, we’ll worry about the bigger explanations when she’s older and can understand.

Emily has bonded with two other little girls in the clinic, and those of you in this world (NB) know them as Hannah and Jenna. They both have Neuroblastoma, and both have relapsed and it truly is heartbreaking to see the innocent play they share while we as parents, in the same room with them fret over every day’s news or of test results. Fact is, both families of these little girls have gotten some upsetting news this week and we ask special prayers for these little girls as we have always asked for Emily.

We continue to ask you pray for Emily’s healing in the face of this setback, and ALL children affected with cancer. We know the power of prayer makes all things possible and with all the bad news we see each day up here, all the kids we don’t see are miracles that have made it out of here. So until later,

Good Night and God Bless,

David and Diane

Tuesday, January 24, 2006 9:40 PM CST

Hello Friends and Family,

We are underway, and we like it!

Emily started her treatment today, and tolerated it quite well. She is getting the chemo and being sent home (to the Ronald McDonald House) at the end of the day with IV fluids running to keep her hydrated.

We were afraid of how she would react to having “tubies” (central venous line) again, but she was very good about the nurse accessing her Medi-Port for the first time, and the only thing we had to do different was have the child life specialist assist her in giving her Ariel doll a port access as well, and she carried it around all day.

Once accessed, we thought we were ready to go, but they needed an x-ray confirmation of where her central line was placed, so that took a little while. Once that was done, we were underway.

The chemo and related drugs ran, and she never thought anything of it except for the fact that she was in a bed as opposed to being in the playroom. While many kids do go into the playroom during their chemo cycle, we are a bit more cautious, and opted to have her stay put and watch movies. It’s only for five days, and better safe than sorry. After all, this is serious business right now, and we don’t need any foul ups.

Mommy is going home tomorrow, and everyone is very sad (except maybe MaryGrace who hasn’t seen her Mommy in two weeks). We are accustomed to this drill, but a lot of old feelings have been brought to the surface.

We now return to the never ending debate of what is worse, being here to see or face bad news, or being home and having to hear about it and be helpless. Once again, we agree that they are equal but different, and hopefully there will be no more bad news to contend with, after all, we got the relapse call, so that’s enough bad news for a while.

Emily’s chemo will run until Saturday, and radiation will get underway almost simultaneously, but we will be here at least 2 – 2 ½ more weeks, and get scanned before we go. We want the monster gone before we leave (if that’s possible). She is going to get some tutoring while we are here because she is missing school all this time, and she is on the brink of reading. So, rather than lose her pace, the School Board of New York provides teachers to keep her on track with her sister and her peers.

We will take on tomorrow with enthusiasm and vigor, and Emily really has to take the brunt of it, so our job….is to keep Miss Emily happy, and let her get this medicine in her body.

So, until later, we thank everyone for the kind words, thoughtful prayers, and continued support.

Good Night and God Bless,

David and Diane

Monday, January 23, 2006 10:30 PM CST

Hello Everyone,

Miracles continue to be answered even in the face of adversity. While we wish we weren’t here under these circumstances, we are thankful for the fact that we can get underway with Emily’s treatment.

The insurance company has agreed to allow us to get the entire radiation treatment and the first round of chemotherapy treatment here in New York at Memorial Sloan Kettering and then they will scan little Miss Emily, and send us home.

Our doctors at home were instrumental in procuring this outcome, and we are grateful on many fronts right now. We are so happy that her chemo will begin at once and we can begin fighting this monster without delay.

We don’t know exactly when we begin radiation, but it will be soon as well, and this disease will be attacked at all fronts.

Going back to our ideas about looking at the bright side of things, we have all the doctors involved under one roof beginning her treatment, and they are communicating with the doctors at home so the handoff will be seamless, and we enjoy the best of both worlds.

We spent the weekend relaxing, and did things to make Emily happy. We went to the carousel at Central Park, and saw all the usual New York stuff. This was all before we have to let her know that she is beginning treatment again.

Emily is not exactly sure about the Medi-Port under her skin, but she knows it has to do with the hospital and treatment, and doesn’t want to talk about it. As we have said before, she is older now, and doesn’t understand why she is going through all this when she feels fine, and our job is to explain to her about the hidden monster of cancer that it has reared its ugly head.

So tomorrow we begin our first day of chemo, and the rest is to follow, so wish us luck as we begin.

Many thanks to all of you who have continued to pray for Emily (and us), and we just ask that everyone remember that prayers do get answered, and our beginning treatment is proof of that. Until later,

Good Night and God Bless,

David and Diane

Saturday, January 21, 2006 11:27 AM CST

Hello Faithful Friends and Family,

We are still in limbo, but have not stopped the fight. We have, on more than one occasion, talked about looking at the bright side of things. This continues today as we come across families who have had it harder than us.

Miracles don’t always happen right in front of you, sometimes they take a circuitous route to a glorious ending and we have been blessed this far, so we have no reason to think it won’t work out this time.

We have opted to vigorously gather all of the information from all of the doctors and submit it for approval. This involves our waiting around until next week when all of this documentation will be ready, but once we have assembled it all, and submitted it, even if it is decided that we must go home for treatment, we will know that is what is meant to be. We will have peace in knowing we did all we could. As much as it leaves a void in our mind and a pit in our stomach, we have to be patient and wait to do things right. Our doctors at home support our decision and have even said they will contact the insurance company to relay their opinion.

Emily has done remarkably well in her recovery from surgery and the doctors marvel at her spirit. However, she does have her limits. She gets tired a little after midday, and is not herself in the evening, but considering the major surgery she has had, and what she is about to face, we have decided that letting her rest when she wants is best for her recovery. As a result, we are not going to undertake any activities too far from home and relaxing may not be bad for Mom and Dad either after the week we have had. So, we shall see what we can do to keep her happy and rested.

Yesterday we met with the radiation oncologist after a good deal of red tape (but we did get an insurance authorization for the consultation), and felt very good about their plan for Emily’s treatment. Without getting into details, the fact that the surgeon, our oncologist here, and the radiation oncologist all work together in one room to design the most effective plan, is quite comforting. After all, who would know better than the guy who physically was in there one week ago to describe to the radiation oncologist what was there. It all just makes sense, and we will pursue what makes sense.

All our thanks to everyone looking out for Emily, and many more thanks for the thoughts and prayers from all of you. We pray for a relaxing weekend and good results on Monday to get this show on the road so until then,

Good Day and God Bless,

David and Diane

Thursday, January 19, 2006 8:26 PM CST

Hello Friends and Family,

Our apologies for the delay in updates but our wireless wi-fi is not working here and we have been trying to get it going, but enough is enough, so we have to do it on shared computers.

Emily recovered in amazing time, and we were sent to Sloan for a day in their POU (pediatric observation unit) and the next day, sent home (back to the Ronald McDonald House).

Today, we had our appointment with the surgeon, and at her 1 week post-op checkup they released her to carry on with her normal life with a minimum of restrictions. Tomorrow, we meet with the radiation oncologist to discuss their plan for treatment of the affected area as there is undoubtedly microscopic tumor left behind.

Now we should fill you in on the more serious news. The doctors want to begin treatment at once because the tumor removed does appear to be recurrent Neuroblastoma, and we agree with them, but we have one problem. The wonderful folks at the insurance company don’t understand why we need to seek life saving therapy at the foremost cancer center in the country, and want us to go back to Florida and seek out treatment at a facility there. This is not to in any way say that we couldn’t get the same great care from our doctors at Joe DiMaggio Children’s Hospital, because we love our doctors, nurses, and staff there, but in light of recent events, there is a lot to consider.

For the last 18 months all of the scans have been done by Sloan-Kettering and results have been read by them. Then, we face relapse and get surgery at Sloan under emergency type conditions. Now, as we face treatment of this relapse, the oncologists here, the surgeon here, and the radiation oncologists here all work together under one roof, and that roof has housed Emily’s treatment for the last year and a half. So, it just makes sense to have that cohesive synergy carry over into her treatment plan for this very serious setback.

As a result, we sit here in limbo as the “powers-that-be” argue over the difference between their pre-negotiated contracts with the Florida providers versus getting care outside of the “network”, all the while, Emily’s health lies in the balance. We are going to assemble the treatment plans from the oncologists, the radiation oncologists, and the surgeon’s notes to submit for authorization by the insurance company. We cannot get all of those documents until probably Monday of next week, so until then, we wait, and keep her happy while we wait.

The recommended treatment plan is to begin a regimen of chemo that runs one week on, and two weeks off. This is a mild chemo that is a lot less toxic than what Emily got before, but no less effective. In the interim, she would get a very specific radiation to the area that the Neuroblastoma retuned to, in hopes of killing off any microscopic remnants. The hope was that we would do the radiation here, and one round of chemo, and then do a scan to insure that it has worked, and go home for the remaining chemo cycles.

If the treatment plan here is denied (as it appears it will be, as it was denied today as it stands) we will head home and renew our relationship with our doctors at home who have always had a special place in their heart for little Emily. From there, we have to pray that communication is wide open between NY and FLA because this is very serious and we need all parties involved to freely share her information to insure that this relapse is treated in the most effective manner possible, and quickly.

There is a lot more to say, but for now, we have to stay the course, and keep Miss Emily happy. We went to see the Broadway show of “Beauty and the Beast” (courtesy of Winnie at the Ronald McDonald House) , however Emily got ill, and we had to leave, but the theater manager gave us carte blanche to return at any time for a makeup show, so all is good.

At the risk of sounding repetitive, many thanks to all of you who have watched out for us, prayed for us, and published us (Michael Douglas & Mark Dungan), and we just hope we have better news to report soon. Please pray for ALL the children affected with cancer because there is no easy road for any of them.

So, until then, Good Night and God Bless,

David and Diane

Sunday, January 15, 2006 11:41 PM CST

Hello Everyone,

Well, Emily has come through her surgery wonderfully and we were discharged from the Pediatric Intensive Care Unit at New York Presbyterian early because of her good progress. They then transferred us over to Memorial Sloan Kettering to their Pediatric Observation Unit and it is a beautiful room. Emily took her first walk tonight, just 2 days after her surgery, and while it was very difficult, she is still the shining example of toughing it out.

Mommy and Emily got settled in and I walked back to the room at the Ronald McDonald House (its 17 degrees outside right now) and we are sleeping in our respective rooms tonight (switching off each day) to be rested for what tomorrow holds. But for now, step one of Emily’s new battle is behind us and seems to be a success.

A lot of what we do next is going to revolve around what the doctor says tomorrow. However, he may say they don’t want to recommend a treatment plan until the final pathology comes back which may not be until the end of the week. So again, the torture is the waiting and not knowing what lies next. The options can range from long to short term treatment up here, maybe a plan to do some or all of the treatment at home, we just don’t know.

So in light of what we don’t know, all we can do is hope and pray for the best for all involved. But for now it appears we will be here at least all of next week. Even if we do have to wait longer for the actual treatment plan, it will give Emily more time to recover from her surgery. And while we don’t know exactly what we are doing next, we at least know that Emily has taken to the medical environment pretty well considering how long she’s been off treatment.

As always, many, many thanks to all of you who have sent thoughts and prayers to our little Emily, and I wish we had more to share, but for now we wait. So until later,

Good Night and God Bless,

David and Diane

Friday, January 13, 2006 11:42 PM CST

Hello Friends and Family,

As you can see above, we took Emily for an evening of fun before we had to undergo today’s surgery. We asked her what she would like to do “extra special” and dangled in front of her all the usual New York fare for kiddos. We offered up a trip to Disney NYC, Toys-R-Us in Times Square, Central Park, but she wasn’t interested. She said all she wanted to do was go down the street to the pottery/craft store and paint something. Well, heaven knows it was easy on us, we could walk there and even after trying to change her mind, she stuck to it. So off we went on our ½ block trek to paint a horse, and she upgraded to a unicorn, and had a ball. Then, it was head home for a good night’s sleep before surgery.

We arrived at New York Presbyterian Hospital around 6:00 a.m. and all the usual pre-op stuff had to get done, then we waited. Once it was time to go to the OR, we walked down the hall, and saw that they have a little different procedure. They have the parents gown-up and go into the room with the child, and then once she is under, we leave and they begin their work.

We sat for hours, and as the time passed, we (Diane and I) started to entertain scenarios of what this mass could be if not Neuroblastoma. We even went so far as to start tossing around how to handle chemo regimens if it were Neuroblastoma, or even a secondary malignancy that can sometimes come about. In a strange way, we were kind of reconciling the things that lay ahead, and started to gain a bit of peace about the whole thing, feeling that even the worse case scenario could be sanely rationalized and dealt with.

Then about five hours later, the good surgeon came into the waiting room to talk to us. And you can take that whole last paragraph and throw it in the trash. At the point that the word Neuroblastoma came out of his mouth, we were figuratively doubled over, if not literally. All the hope we were clinging to was ripped from our clutches and after our marathon rationalization pow-wow, our worse fears had became reality. I won’t bore all of you with the medical jargon or description of things that went on, just suffice to say, “HERE WE GO AGAIN”.

From this point forward, when the tears have subsided, and we start to explain everything to Emily (who went to sleep after a night of playtime and awoke in a new world she doesn’t even know, remember, or understand) we have to put on the war paint, and start fighting again. In doing this, we plan to focus on the positive things, and be thankful for them. As we said once before, she has no disease in her head (which is a tough road unto itself), she does not have disease in her bone marrow (which even the surgeon said today was favorable), she tolerated the surgery wonderfully without incident (always a plus), and most of all, there are treatment plans out there to address this, and we just have to be diligent in pursuing them.

Right now is our time to mourn, cry, and share (while Emily is still under the effects of anesthesia and doesn’t know) but once the pathology on the tissue comes back, we will meet with our doctors here at Sloan Kettering and get our options and game plan, and go after this with all we have.

Thankfully, we have great support systems in place to help our cause. We have a great community of other families who have (and still are) walking this journey who provide strength and inspiration. We have a network of friends and family that keep things going on the home front. We have excellent doctors(both here and at home) that all have Emily’s best interest in mind, and really understand both what it is we are going through, and what we are facing. We have our faith to keep us strong, and allow us to rely on someone much greater than us to heal our little Emily. And most of all, we have each other to keep us strong, and keep it all together for Emily as we get into the next phase of reckoning with this horrible disease.

Many thanks to all of you who continue to check on Emily and us, and we appreciate now more than ever, all the prayers. This is going to be an emotional weekend, but we will get through it, and Emily will continue to be the trooper she has always been. She is in the ICU now, but with healing will go back to Sloan-Kettering and be on the floor, hopefully before we meet with our oncologists here and figure out the next step.

So, until later, Good Night and God Bless,

David and Diane

Friday, January 13, 2006 4:54 AM CST

Hello Everybody,

We are here in New York, and have had all our consultations, and we are not afraid to say, it has been a stressful day to say the least.

We got quite an alarming education, and while it’s not what we may want to hear, its facts we have to face. The facts are, that we don’t know exactly what this is they are removing it. We are hoping it is benign…….they don’t know.

So, until later, we will wait for the trusted surgeon to do his best, and we await the news that lies ahead. As of right now, we will be in the hospital at least one day in the Intensive Care Unit, and several days after that, in the hospital. It is a serious surgery, even though the lymph node, they describe, is small. Nothing is small, when it it’s growing in your little girl’s belly. Her surgery is scheduled for 7:30am. Please say a prayer for her.

Emily ate a lot today,……..Fruit loops, milk,” Bread Butter” (her fav, (Hawaiian Bread with butter) chips, vanilla pudding, turkey, cheese, peas (where does that come from??)””More Hawaiian bread butter, and DORITOS, and more vanilla pudding! Those that know us, know we would NEVER give Emily or MaryGrace snacks or dessert twice in one day…….today……..Emily ate her choice! She is happy, and asleep.

We are planning on both staying in ICU with her, so don’t expect an update tomorrow. The ability to use our laptop is limited to a few feet in the lobby of the Ronald McDonald House .We will update ASAP.

God Bless, and Good Night,

Diane and David

Tuesday, January 10, 2006 10:26 PM CST

Hello All,

Well, we have had an entire weekend to try to digest the news, and that we have done. The biggest thing though we have to say is:

THANK YOU TO ALL OF YOU WHO HAVE CALLED US, MET WITH US, E-MAILED US, AND PRAYED WITH US.

We never thought we would have to travel down this road again, but as fate would have it, we are asking for prayer once again.

Problem is we don’t quite know what to pray for besides the overall good health of Emily. We now know we are going to New York tomorrow, but as of a few hours ago, the entire scheduling process was held up over no insurance authorization, and that made for a most stressful afternoon. As if it’s not enough to have to go through this, but to have something like an insurance issue delay Emily’s treatment is ludicrous. Suffice to say, we have resolved things for now, and she will be evaluated Thursday, and have her surgery on Friday.

We had the weekend to take down our Christmas decorations, and get ready to pack, relax and get ready for what’s ahead whatever it may be. We also had a talk with the girls about what we are about to undertake. MaryGrace is staying home with Grandma (and continuing school) and Emily has to go back to the doctor in New York to see what’s in her tummy.

There are a lot of angles to deal with for Emily, the biggest of which is when she wants to know why we have to go back to New York. We have always prided ourselves on being honest with her, and while that will never change, her perception of things is a lot different than when she was three years old. Back then, she just did what Mommy and Daddy said, and she put on a brave face and followed instruction. She cried when it hurt, she vomited when she was nauseous, and held her Mommy a lot. Now, she wants to know, “why do those kids not have any hair?” and “why do I have to go to the doctor, I don’t have a tummy-ache?” and as honest as we want to be, there are some things you can’t quite break down to her level of understanding. She’s old enough to ask questions, but not old enough to understand the answers.

We’ll do our best, but right now, we have to find out what is going on inside her body because now, Mommy and Daddy have had a tummy-ache since last Thursday. If it’s a benign growth, we’ll celebrate and move on, and if it’s more, we’ll put on the war paint and fight with all we have. But not knowing is a torture nobody should have to go through.

So, our next update probably won’t be until Friday, after they actually do the surgery and we get some news. So keep the prayers coming and know that we appreciate all of you out there who have embraced Emily in this time of need, and look forward to getting some good news on Friday (the 13th).

As always, many thanks, and until later,

Good Night and God Bless,

David and Diane

Friday, January 6, 2006 4:33 AM CST

Hello Friends and Family,

We need prayer for Emily.

In meeting so many different families in different stages of treatment, Diane and I have often talked about, “which is harder, the news of original diagnosis, or the news of relapse after a family has gone through torturous treatment? “ Since there is no real answer, it was limited to just talk in our idle time, and gave us the inspiration to pray for all those who get bad news no matter what the scenario.

Needless to say, today we are the recipients of said “bad news”.

The scans we just had done for Emily last week have shown “a suspicious finding” around the area of her original primary tumor site. This in and of itself it may not be so alarming, but the doctor’s have said that we are to go to New York immediately for surgery and check this out with a biopsy. But, having experience with so many other Neuroblastoma families, this appears to be leading down a bad path.

In all fairness, there is still the minute outside chance that this is the growth of a benign tumor, and we will hang onto that hope until we are told different. After all, her urine tests and bone marrow biopsies so far have all come back okay, but this disease is a sneaky monster, and we have to keep our guard up at all times, and if there is even a slight suspicion that it is coming back, we are addressing it now.

While in the face of bad news, we will count our blessings, as things can always be worse. Emily’s CT scans revealed that she has no disease in her brain and orbits (which is a common relapse point) and as for this mystery in her pelvis…we will wait until the biopsy results come in to face the worse, if at all.

Right now we just ask that you and your friends lift Emily up in prayer and that her body be free of cancer.

We don’t know what tomorrow holds but we know that God will watch over Emily and our family. Until later,

Good Night and God Bless,

David and Diane

Thursday, January 5, 2006 9:22 PM CST

Hello Friends and Family,

We need prayer for Emily.

In meeting so many different families in different stages of treatment, Diane and I have often talked about, “which is harder, the news of original diagnosis, or the news of relapse after a family has gone through torturous treatment? “ Since there is no real answer, it was limited to just talk in our idle time, and gave us the inspiration to pray for all those who get bad news no matter what the scenario.

Needless to say, today we are the recipients of said “bad news”.

The scans we just had done for Emily last week have shown “a suspicious finding” around the area of her original primary tumor site. This in and of itself it may not be so alarming, but the doctor’s have said that we are to go New York immediately
for surgery and check this out with a biopsy. But, having experience with so many other Neuroblastoma families, this appears to be leading down a bad path.

In all fairness, there is still the minute outside chance that this is the growth of a benign tumor, and we will hang onto that hope until we are told different. After all, her urine tests and bone marrow biopsies so far have all come back okay, but this disease is a sneaky monster, and we have to keep our guard up at all times, and if there is even a slight suspicion that it is coming back, we are addressing it now.

While in the face of bad news, we will count our blessings, as things can always be worse. Emily’s CT scans revealed that she has no disease in her brain and orbits (which is a common relapse point) and as for this mystery in her pelvis…we will wait until the biopsy results come in to face the worse, if at all.

Right now we just ask that you and your friends lift Emily up in prayer and that her body be free of cancer.

We don’t know what tomorrow holds but we know that God will watch over Emily and our family. Until later,

Good Night and God Bless,

David and Diane

Sunday, January 1, 2006 9:08 PM CST

Hello Everyone and Happy New Year,

Well, as you can see, we spent the holiday in the cold, but we were together and not in the hospital (actually, we were in the hospital every day, but just for tests, not treatment).

Emily continued to be a trooper with everything from getting an IV upon arrival to having to lie still without sedation for hours for her different scans, and never a tear. She is however getting a little more cognoscente about the procedures and even asked Mommy tonight, “why did I have to go to sleep, and get these boo boos and you were waiting for me?” So, while we have always been 100onest with her, Emily’s understanding has gone up and the degree of honesty has elevated as well. As a result, there is going to be a bit more explaining with every new procedure henceforth.

We made the most of our trip but sight seeing and shopping on the weekend leading up to New Years Eve in New York City is all but ridiculous. So we attempted a few things, entertained the girls, tried to get in a few good meals, and looked forward to getting back home to the warm weather.

As we left New York, we took an afternoon flight and prior to boarding the snow kicked up again, and kept up. So rather than taxi on to the runway we sat on the plane for over an hour and a half because now they had to “de-ice” the plane and that determination wasn’t made until we were all strapped in and ready to go. We got home around 10:00 p.m.

Now, we are trying to get out of holiday mode and into real life mode, and the girls start back to school tomorrow. So, while we take on this New Year, we pray for new beginnings all the way around. We hope for good scans for Emily, and continued health for the rest of us. We hope for a smooth transition back to school for the girls, and that we get back to work with a clear mind.

Many thanks to all of you who donated to Lunch for Life, and of course we are grateful for all the prayers for Emily. We feel fortunate to have all of you behind us, and appreciate your checking on Emily. So to all of you,

Good Night and God Bless,

David and Diane

Monday, December 26, 2005 8:27 PM CST

Hello Friends and Family,

Christmas is upon us, and as you can see, the girls had a great time. The whole season has been filled with spirit, and it continues to just be one big whirlwind.

Last week, we went to Walt Disney World and the girls are really getting old enough to appreciate things now, and subsequently, we enjoyed watching them appreciate. They went on their first “big kid” roller coaster ride, and had breakfast with Cinderella and all the Disney Princesses, so it was all juvenile bliss.

Once we got home, it was time for the holiday preparations and the girls have helped with everything from decorating the tree to making sugar cookies with Grandma. As for the gifts, Emily and MaryGrace were the usual five-year-olds that ripped open package after package and if something caught their eye, they might slow down for a second or two. But then it was back to the devastation until they would settle on a favorite which was usually a cardboard box or plastic fastener that held a toy, never the toy itself.

The day after Christmas, Emily awoke saying she couldn’t hear out of one ear, and with our impending trip to New York, we were afraid that there might be a bigger problem brewing and a plane flight could be horrible. Her ENT was not in, so it was off to the ER and find out what this problem was and see if it was going to stand in our way. As it happens, it’s just an external ear canal infection and it can be treated with antibiotic drops, so the trip is still on.

We are leaving this week for New York, and will undergo the usual three-month schedule of scans to make sure Emily’s disease is still under control. This will be a short visit but all the same tests still apply and we will have to try and weave some entertainment in between procedures, to divert her attention from all the tests, and keep the girls occupied while in the Big Apple.

We would like to thank all of you whom made donations to “ Lunch for Life “ and made their holiday fundraiser such a success. We take great pride in knowing that we helped in some small way to advance the research of a cure for this horrible disease, and all of you made that so.

So, until later, we pray for clear scans, and a safe trip and as always thanks to all of you for your prayers and support.

Good Night and God Bless,

David and Diane

Tuesday, December 13, 2005 9:38 PM CST

Hello All,

Well, Christmas is drawing near, and the girls are getting in the mood.

This weekend, we continued an Adamson Family Tradition and attended the annual performance of The Nutcracker (we became engaged after our 1st Nutcracker experience!!). Aside from the seat location, it was beautiful. We were front-row-center on the balcony level, which sounds great online, but when you arrive and see that you are seated in a row that is sixty feet in the air with nothing but a two-and-a-half foot wall to prevent your falling, it is a tense moment (Only for David, the “Worst Case Scenario” dad!!). Adults would love these seats, but with two excitable five-year-old girls who have been watching the movie all week, and could jump up at any given moment, it was a bit nerve racking. Nonetheless, they were perfect little ladies, and sat like statues during the entire performance.

Emily’s last test revealed that she will need to stay on antibiotics another year because of her kidney reflux. Her antibiotic tastes like bubble gum, and we have gotten into the habit of calling her daily dose “her bubble gum”. Someday, in her future, (when she actually gets to have a piece of bubble gum) she will realize, that Amoxicillin,…..is not bubble gum! We are prepared to deal with that deceit!!

We have had to deal with other “family business”, as David is safely back to work, and having the days of Mr. MOM are gone. David is very happy at “RADIO DISNEY” doing marketing and advertising. Being a parent, of 2 five year olds, puts him in a position, to know a lot about Disney!! The girls are thrilled, even to see that mouse emblem on stationary and correspondence. We thank God, for such an opportunity.

We thank ALL of you, that generously gave to Lunch For Life. We hope and pray, that a cure for Neuroblastoma will soon be found, and that can only happen through research. Thanks again, to everyone who gave up a lunch for this great cause. Anyone, still wanting to give, please got to www.lunchforlife.org, and find Emily’s giving tree.

Tomorrow we will leave on our first non-medically related trip in years (some call it a vacation) and are looking forward to time off with no worries. The medicines are limited to the one we spoke of at the beginning of this update, and aside from that, we are free to do what we want. We are looking forward to 5 days of absolute family bliss, so no more updates until we get back next week!

Until later,
Good Night and God Bless,

David and Diane

Sunday, December 4, 2005 10:25 AM CST

Hello Friends and Family,

Things are fairly normal here and Emily is doing wonderful. She didn’t care much for the last test she had to have, but it revealed some good news. Her kidney reflux has completely healed itself on one side, so all we have to worry about is the mild reflux she still has on the other side. It is the opinion of the doctors that it too will heal itself in time.

We go to New York for her next round of scans at the end of this month, and hopefully the girls will get to take in New York in its entire Christmas splendor. Everything form the windows in Macys to the tree at Rockefeller Center should be a real memorable occasion for them.

As we enter into this season of thanks and giving we want to make everyone aware of an issue that is very important to us. We have never solicited for donations for Emily, but there is a charity whose mission is to eradicate Neuroblastoma and we can’t help but get behind them in their efforts.

The charity is called “ Lunch for Life “ and the premise is to give up lunch for one day (at an estimated cost of $ 5.00) and to have that day’s lunch money go to research for the cure. In addition, the idea is to spread the word and have others do the same. Some workplaces have even gotten together and had large groups do it together to present a big donation to “ Lunch for Life “.

This goes on year round, but now as an added bonus they have added a twist to Lunch for Life this year in light of the holiday season. Each of the 200 children with neuroblastoma that are a part of “Lunch for Life” has a virtual holiday tree at the “Lunch for Life” website. When you donate in a child's name that child also receives an ornament to decorate their virtual holiday tree.

“Lunch for Life” was started two years ago by desperate parents of children with neuroblastoma because of the dire lack of research funding dedicated to curing the disease. What do I mean? The federal government provides research funding through the National Institute of Health and finally the National Cancer Institute. These funds then trickle through several agencies where it finally falls into the hands of researchers. Last year the Children's Oncology Group (the largest group dedicated to children's oncology research with over 200 member hospitals) received $1.5 million to be dedicated to research neuroblastoma. Breast cancer researchers received over $15 BILLION.


I ask that you help us, the families of Neuroblastoma and most importantly, our children by skipping lunch and donating the money you would have spent on it to “Lunch for Life”. There are no expensive market programs, no commercials, and no loudspeakers. The message and our children's future depends on each and every one of us doing our part to ask the world to give up one day's lunch to cure cancer.

If you can find it in your heart this season, go to www.lunchforlife.org, and click on the ad that says “Donate here”. As you start to complete the Donation information form, click the drop down menu and select “in honor of Emily Adamson”. Then input her giving tree code which is 14372, and then go to step 2. This is a completely secure web site, as you will recognize by the “https” in the URL address. We will be proud to know that Emily’s friends and family made such an impact on this holiday-theme drive.

So until later,

Good Day and God Bless,
David and Diane

Thursday, November 24, 2005 9:14 PM CST

Hello All,

Well, we are at yet another holiday celebration, and we certainly have a lot to be thankful for this year. Any time we need a reminder, we can just think back to where we were for Thanksgiving two years ago. This was a few months after Emily was diagnosed and the idea of spending a holiday in the hospital was unthinkable. But, cancer doesn’t take time off for holidays, so we learned to adapt. Food is transportable but Emily wasn’t, so that day Diane came to the hospital with a feast all boxed up. We gathered around, got the nurses to get us a few extra bedside tables, we gave thanks and ate.

Then a year later, by the grace of God, we were able to celebrate Thanksgiving at home, and now two years later, we will always remember how much we have to be thankful for. While there is way too much to list, some of what we will always be thankful for is…..

- for our faith that has kept us strong throughout this journey
- for our family that has grown to be stronger than we ever thought possible before this illness
- for our friends who continued to stand by us during difficult times
- for our pastor who guided us spiritually in our darkest hours
- for the doctors, nurses, medical assistants, researchers and everyone affiliated with Emily’s treatment that has brought her to where she is today
- for the opportunity to travel and get Emily the best treatment available
- for other families that travel this path as we help each other cope

Lastly, we are thankful for God’s grace in providing for us on so many levels for these past two years plus. Financially, mentally, spiritually and medically we have been blessed. We always seemed to be where we were supposed to be, at the time we were supposed to be there. We never had to question things, just believe, and love our little girl and the rest would take care of itself. By our faith, we had strength we didn’t know we had and it went to good use.

May all that read this be equally blessed and thankful this Thanksgiving season. We continue to pray for those who are still in the dark days of their journey, and hope they will be able to say these very same things one day.

Happy Thanksgiving and God Bless,
David and Diane

Monday, November 7, 2005 8:53 AM CST

Hello Friends and Family,

The weekend was a busy one, but it’s nice to get back to doing normal things.

Saturday night, Emily and MaryGrace were ambassadors to the Fairy Tale Ball thrown by the Diamond Angels of Joe DiMaggio Children’s Hospital Foundation. It was a fundraiser for the construction of a pediatric oncology unit and the theme was “ An evening with Cinderella”, as you can see, they dressed appropriately. It was the girls’ very first evening party and they were the only children there. Luckily, many of the people there were doctors who have cared for Emily over the past two years, so as a result, the girls acclimated quickly.

It was really wonderful to see all of these people in a personal setting with fine food, drink and music as opposed to the halls of the 4th floor with the scent of alcohol and hospital food. As expected, there was quite a fuss made over Emily and MaryGrace and hopefully they pulled enough heartstrings to loosen up some purse strings. While we hope to never have opportunity to make use of the new unit, we couldn’t think of a better purpose for funds raised than to provide for little cancer kids in the future.

School started back today after a two-week hiatus courtesy of Hurricane Wilma. Even though about 900 of the 1300 traffic lights in this county are still out, there are police and fire personnel at every imaginable intersection around the schools and we’ll make the best of it. We’re lucky because we only have one light to go through between our house and the girls’ school.

Emily’s next medical venture is November 11th, and she goes in for a VCUG scan to see if her kidney reflux has healed itself. It’s been a year since last tested so we are very anxious to see if we are out of the woods on this issue. Other than that, our doctor visits are becoming a lot less frequent, and that’s a good thing.

We extend a special thank you to the Joe DiMaggio Children’s Hospital Foundation for spoiling Emily and her sister, and as always many thanks to all of you who have been praying for Emily. Please continue to pray for all of the little children affected by this disease. Until later,

Good Day and God Bless,
David and Diane

Sunday, October 30, 2005 4:34 PM CST

Hello All,

Hurricane Wilma knocked, and said “trick or treat”!

The trick is trying to find gasoline for your cars or generators without waiting 6-8 hours at any service station within a hundred-mile radius. The treat is getting power restored after 4 days of cold showers and no power. While this was incredibly inconvenient, there are people here who have it much worse, some that won’t have power until November 22nd and that is a travesty.

Moreover, this widespread loss of electricity has really brought so many parts of our lives to a standstill and it is clearly going to take a long time to get caught up. For example, Emily was scheduled to have a test done on the day the hurricane hit (a VCUG to measure her bladder/kidney function) and during the 100 mph plus winds, there was nobody there to reschedule it with. This wouldn’t normally be a big deal, except that this was scheduled a year in advance, and we are anxious to see if she has gotten better in that year. What’s more, school has been out for an entire week so far, and appears we are well into week 2 with no actual decisions made as to when they will reopen.

In addition, Emily had a series of tests last week that who knows when we will hear the results of, because of all this mayhem. But again, we all have our health, the house didn’t blow away, and this is just a bump in the road that we will face as we have many others before.

Since the streets are full of debris, downed trees and power lines, and are basically unsafe to travel on even by foot, trick or treating is looking like a bad idea. However, the shopping plaza near our home had a “merchant sponsored” trick or treat on Saturday where the kids could walk in absolute safety from store to store and get their goodies. The end result was the same…a whole bag of candy that Mommy and Daddy will throw away more than half of, and the remainder will be rationed out over the next year, or at least until Easter.

So, we are at the mercy of Mother Nature’s wrath and cannot go forward with making sure little Emily is doing better until things get back to normal. With being in treatment for over two years now, one of the many lessons we have learned is to not get to get worked up over things we cannot control. The hospital will be there tomorrow, and we will pick up from there, and reschedule those tests that were not done. She doesn’t have a fever or appear to be ill in any other way, so there’s no emergency, just inconvenience, and considering what Emily has been through, this is nothing.

So, we ask prayers for Emily and all the other little children affected with this and other diseases, and also for those displaced by the storm(s) this season. With many thanks we wish everyone, until later,

Good Night and God Bless,

David and Diane

P.S. - We finally updated the photo section too !

Thursday, October 20, 2005 12:03 AM CDT

Hello All,

Once again prayers have been answered and Emily’s latest round of scans have come back negative. We don’t want to get too technical, but all of the usual tests for Neuroblastoma have shown no evidence of disease. This is especially significant as we have now entered into the second year since she was pronounced NED (No Evidence of Disease) and have completed 2 rounds of scans since July and she remains the same.

This weekend, we walked in a fundraising “Buddy Walk” for children with Down’s syndrome and the girls were very good. Of course walking along the beach just after sunrise with the wind in your face doesn’t leave room for much other than being happy. While Down’s is a serious condition much bigger than all of us (as is cancer), we felt good doing our tiny little part to help the fundraising efforts by walking, and being there to support the cause for our friends. Hopefully all of these people doing their “little part” that day will help advance research into this disease.

Now we get ready for Emily’s big night in the spotlight, as she is the guest of honor for the Diamond Angels “Fairy Tale Ball”. This is a gala given by the hospital once a year as a fundraiser for the Joe DiMaggio Children’s Hospital. They are currently raising money for the construction of a pediatric oncology floor, so the cancer kids can get treatment in their own environment, instead of being mixed in with children who may have illnesses that could severely harm an immune compromised child. I’m sure this new wing will do a lot more than that, but I am looking at it from a very selfish point of view and that was always one of our biggest concerns.

In addition, the hospital newsletter, “Healthwatch” featured Emily on their cover and it was put in every Sunday paper in South Florida. They told her story on the inside and while it was painful to revisit those dark days when she was first diagnosed, it was nice to see them so proud of her progress. They were there with us during the bad times, and now they celebrate with us every day she remains disease free.

Friday, Emily goes in for some tests here at home. The first is called a GFR and it measures kidney function and since her tumor was so involved with all of those organs, we continue to monitor her healing. Then Monday (Hurricane Wilma permitting), she goes in for a VCUG to measure whether she still has any kidney reflux, which we are hoping has healed itself, and she can stop taking her daily antibiotics. This is the only medicine she is still on, but after 2 years, we are looking forward to being able to stop.

We ask that all who read this keep in mind that not all children have the same results as Emily and that you continue to keep all of the little children affected with this horrible disease in your prayers. Until later,

Good Day and God Bless,

David and Diane

Thursday, October 13, 2005 7:20 AM CDT

Hello Friends and Family,

Well, we are back from New York City and completed another round of scans. Now for the hard part…waiting for results. Luckily, we got one of the results the same day as the scan itself but that was an exception, not the rule. There are still 4 or 5 more tests we need the results from, but when the tests are done on a Friday, and Monday is a holiday, the usual wait is even longer. So, until then we pray that the monster is still gone and we will get good news that will last us for another 3 months until we go through the whole thing all over again.

The doctors and nurses in New York loved seeing the girls and everyone commented on how healthy Emily looked. This was also a momentous visit because it was the first time we did scans with no sedation. The doctors felt she is big enough to lay still on her own, so we tried it, and Emily did just fine.

We had a small scare when we got home this week. Tuesday morning the school nurse called and said they had Emily in the office and she was complaining of chest pain and crying. Needless to say I dropped everything and scooped her up and ran to the ER at Joe DiMaggio Children’s Hospital. Now this may sound extreme, but considering she has had 3 bouts of pneumonia in the past year and a half, we weren’t taking any chances. Her chest x-rays were clean and strep screening was negative, so we were sent to home to face a new fact…Emily is a little kid, and little kids get colds. This concept is a little easier to grasp once you have clean x-rays behind you but we really do have to start realizing that every illness isn’t a catastrophe. While Diane is certainly less panicky in these situations, we were in agreement that this was worth the trip to get some peace of mind.

It’s quite difficult to stand back and not let these seemingly “normal” childhood illnesses not get the best of you. But, when you’ve spent two years watching her as closely as we have, you just automatically assume that every fever means something, every cough is going to lead to pneumonia, and every complaint has to be addressed with one drug or another. I guess that comes from having a child with cancer. You never completely shake off the memories of how things were while she was in treatment, and when an illness strikes, you fall right back to that moment in time.

However, aside from a cold that everyone in the house has had, she is doing fine and we are going to the doctor today as a follow up to Tuesday’s ER visit. Since there’s no school today, they will both get to go, and have their run of the clinic. So until later, we pray for all clean scan results and continued health for our little Emily as well as all the other little children affected by this horrible disease.

Good Day and God Bless,

David and Diane

Wednesday, September 7, 2005 8:41 AM CDT

Hello All,

We are back from our long weekend and the Family R.O.C.K. conference was great. We took in a lot of information about different cancers and their related medical and social late effects. Once you look beyond the actual disease and it’s treatment, there is a whole world of things we never knew about. It was most interesting to learn about all of these issues and we came away with a newfound knowledge of our “ next step “ in Emily’s treatment.

In addition to the information that was disseminated, there was an unlimited supply of food and activities. There were scores of things to do for the kids and on the day we took in all the classes, they kept the girls from 8:00 a.m. until 5:00 p.m. This allowed them to have fun and gave us a chance to take in all the helpful information without interruption. Now, I haven’t even mentioned the fact that the accommodations were superb as well and the people at Disney made our visit the most enjoyable you could imagine.

After Saturday’s sensory overload we were given passes for the whole family to go to any of the theme parks we chose and with two five-year-old girls, you can probably guess we wound up at the Magic Kingdom. After a full day of Disney and the melody of “It’s a small world” rattling around in our heads, we headed back to the hotel for some much needed rest. The hotel had a kiddy pool with a sandbar in the middle and the girls just swam and played until the sun was going down, and we retired to our room.

Monday came and it was time to pack and head home and while we didn’t really want to be on the road on Labor Day, that’s the way it worked out. There were numerous storms and loads of accident along the way so our trip took longer than expected, but we were going home so it didn’t matter.

The American Cancer Society did an excellent job in providing an unbelievably enjoyable weekend for the whole family and I would encourage any other pediatric cancer families to talk to their hospital social workers about these events in the future. As for now, its back to the grind of elementary school, which is a far cry from Mickey Mouse, but it’s nice to be home. We have no big plans now until October when we go to New York again for Emily’s quarterly scans, and we just pray for her continued health, and clear scans in the future. Thank you all for thoughts and prayers, and until later,

Good Day and God Bless,
David and Diane

Thursday, September 1, 2005 8:19 PM CDT

Hello Friends and family,

As you can see above, Emily and MaryGrace have gone through their first hurricane, and did quite well to pose in front of some of the damage we sustained. This was just one of the scores of trees that went down in our subdivision and we went without power for 5 days. We are thankful that we now have power.

But now that we have gotten power, we have to bear witness to the devastation this same hurricane has caused our neighbors in the Gulf States and we are almost embarrassed to complain about our hardships in the face of that catastrophe. We can only all collectively pray for God’s will to be done, and hope for the power of prayer to deliver these people from their plight as soon as possible.

We are meeting with Emily’s speech pathologist and special education director tomorrow and we will find out the degree of her speech deficiency and how to get on a plan to get her up to speed. After that, her extra curricular activities (in school they’re called “special day “ activities) might be substituted for speech therapy, and if it helps, no problem here.

Once that meeting is over, we head out to our Family R.O.C.K. (Reach Out to Cancer Kids) Weekend and we will take in all the resources the American Cancer Society has to offer. They have activities for the kids and all day workshops for the parents so we expect it to be a good time. In addition, one of Emily’s favorite doctors, Dr. Kramer, (from Joe DiMaggio Children’s Hospital, here in Hollywood) will be speaking at the event, but she is speaking on more Leukemia based diseases rather than solid tumor. However, it will be great to see her in a casual setting just the same. The conference is on Disney property, in Orlando, and they have graciously included a day of fun in the Magic Kingdom for the kids. The girls can hardly contain themselves! Once we return, it will be back to the grind, and hopefully no more hurricanes.

We thank all of you as always for the kind thoughts, words and prayers, and continue to ask for prayers for Emily and all of the little children affected with this disease. In addition, this time we ask prayers for all of the people affected by this devastating storm, and may they find shelter soon, and start rebuilding their lives as soon as possible.

Good Night and God Bless,

David and Diane

Sunday, August 14, 2005 5:16 PM CDT

Hello Everyone,

As you can see above, Emily and her sister have taken in more baseball action this summer. This time, it was courtesy of Cure Search (the link is below) which is a combined effort of the National Childhood Cancer Foundation and the Children’s Oncology Group. As guests, we went onto the field while a Cure Search PSA played on the big screen, then they did a short profile on Emily and her care here at Joe DiMaggio Children’s Hospital and the applause from the stands was heartwarming.

We then retired to our seats and midway through the game, we spotted an official looking guy carrying the Florida Marlins World Series trophy through the lobby so we asked if Emily could have a picture with it, and when they saw who she was they said, no problem. It was great for the girls to take in the action, the attention, and the music & excitement of the game itself.

However, tomorrow is another story as we head back to the much stricter grind of the new school, and all is not fun and games. They both did very well last week, and it appears they are going to adjust well to their new environment.

The speech pathologist met with Emily and did an evaluation, which we can’t wait to hear the results of. While we are looking forward to getting her speaking correctly at least we know the cause of her shortcomings. The chemo killing her hearing right at the time that she should have been learning to form sentences is something that we have known. What was surprising was the speech therapist was ready to defend her findings because as it ends up, most parents don’t want to accept that there is a problem and the child may not be up to par on their speaking. Again, I guess it’s because of her intense treatment, but we welcome all outside help and while she is lacking a bit in her speech, after what she’s been through, speech therapy will be playtime for her and nothing for us to feel bad about.

We offer many thanks to Cure Search, NCCF, COG, Major League Baseball, the Florida Marlins, and all the staff for the great day for Emily and MaryGrace. In addition, we continue to be thankful for Emily’s progress and ask that others may achieve the same response. So until later,

Good night and God Bless,

David and Diane

Monday, August 8, 2005 10:14 AM CDT

Hello All,

Today starts a new chapter in Emily’s life (and her sister as well). Today they start Kindergarten at a new school, and for the first time in their lives they are going somewhere different than to the surroundings of the preschool that cared for them since birth. What makes it even more different is the day care / pre-school they went to is literally just across the street, so they have never gone to school in the car. At the same time, as parents, there was a certain comfort in knowing that they were just across the street, and you could walk over and check on them anytime. Now they are several miles away, and we saw them off this morning in what looked like a miniature version of New York City. Problem is, I think we were more upset about it all than they were. They quickly found paper and crayons and looked at Mommy and I and asked us when we were going home…go figure.

We arrived back from New York last week, and just in time for orientation for the new school. It was a bit emotional leaving this time since Emily’s 3F8 antibody treatments are over and we really won’t be working with a lot of the people that cared for Emily this past year since the antibody therapy began. It’s not a complete goodbye as we will still be going up every three months for her scans and checkups, but it is really another phase of treatment behind us. Our thoughts and prayers are with the little ones who still are going through it, (Hannah, Alina, Sydney, Jeremy, Emily W. to name a few) as it is a really tough treatment. We had the chance to meet a lot of other parents who are in nearly the same boat as we are, and we just hope they all have as good a response as Emily. It was great being able to interact with these people and share stories, information, secrets on getting them to take their meds, and the like.

Now we return to the closest thing to a normal life we have known for the past two years. No more unexpected calls to fly to NY, no more late night trips to the ER (God willing), no more charts and calendars to track all the medicines. Now our problems are relegated to the usual trying to get her to eat new foods, getting ready for school on time, and the daily fights over who wears what color clothing (it’s a twin thing). We are thankful for problems like these.

So, now it’s off to start doing some normal stuff, and as always, thanks to all of you for your continued support, prayers, and well wishes. Until later,

Good Day and God Bless,

David and Diane

Tuesday, August 2, 2005 10:57 PM CDT

Hello Everybody,

It’s the end of an era.

Emily has completed the recommended number of 3F8 antibody treatments, and as of this evening she is HAMA positive and so we are headed home. We got the call around 5:30 p.m. and plans are to go to the clinic tomorrow to get Emily’s IV out, and get on a plane.

This was the final round of treatment in this protocol, and although it may sound masochistic, we actually inquired as to whether there were any further recommended treatments for Emily’s situation. In light of the fact her scans show her to still be free of disease, she is eligible for nothing more, and I guess it’s time to take that news and run with it.

As parents we want to get every available advantage for Emily, but at the same time, we may have to stand back and realize that we are at a point that we can return to a normal life. While we will never stop “looking over our shoulder”, it seems that we are blessed with a clean bill of health as we take on this next phase of Emily’s treatment, that phase being letting Emily be a little girl. Maybe now she can go more than a week without having to see a hospital, nurse, a needle, or her blood going into a tube and she can start elementary school like her sister, and hopefully start living a life that a five year old should enjoy.

We are flying back on Wednesday, and will settle in on Thursday, then Friday is the orientation at the girls new school. We look forward to meeting the teachers, and getting into the groove of the education system.

For now, it’s time to pack up the room, and get ready to go tomorrow. So until later,

Good night and God Bless,

David and Diane

Friday, July 29, 2005 4:30 AM CDT

Hello All,

We are in New York and treatment is underway, but it was a hectic arrival to say the least.

The situation at the Ronald McDonald House NYC is the same as it was two weeks ago, FULL. At the time we tried to make arrangements, we were number 18 on the list and by the time we were flying out we had only moved up to number 11. As a result, we had to get a hotel about the same number of blocks south of the hospital as the Ronald McDonald House is to the north. Even this place could only house us for two days because the hotel was oversold for the remainder of the week as were five other hotels in the immediate area, not to mention the rates. But, when push came to shove, we checked out Tuesday morning at 8:00 a.m. and by midday a room came open at Ronald McDonald House, and now we are back in our normal surroundings.

Emily’s antibody treatments are underway after a six-month hiatus and the side effects are very painful and she is wrestling through it daily. The pain comes in a lot of different forms and none of them are easy. She is getting severe abdominal pain that causes her to bear down on her stomach muscles and not breathe. She then starts itching so badly that if left to her own devices, would probably draw blood from the violent scratching. She has recently even started getting back pain, and is just in an overall state of irritation during the whole ordeal.

Once again, Diane and MaryGrace had to go home on Wednesday, and Emily and I are alone here, waiting to get through this so we can head home and be a family under one roof once again. The good news is, if all goes well, this will be Emily’s last treatment like this. The antibody goal is four cycles with a HAMA positive at the end. While we don’t know the exact details about the fact she has been positive in between all of these cycles, the doctors told us quite plainly that after this cycle, and a positive test result, there will be no more. All of this provided nothing changes in her NED status and that of course is something we pray for every day anyway.

It’s lonely being out of town and going through this, but we just have to keep in mind that it’s all for the bigger good. It’s equally lonely and difficult for Diane as she is thousands of miles away and after witnessing how tough this cycle is on Emily and then having to leave, is just gut wrenching. But, we have a good bit of practice at this and we work very well as a team. The idea we are holding onto, that this is her last treatment, is the icing on an otherwise bitter cake.

We have met a lot of great families here this trip, and many of them have stories similar to ours. However, there are also those with very serious setbacks and problems and we ask that you think of them in your prayers as well as Emily as we all go through this horrible journey of pediatric cancer.

We take on today with a renewed sense of purpose and the close of our first week of this treatment cycle. I guess the thing to remember is, “Emily’s doing the hard part” we're just here to be supportive and comfort her. That being said, we have no business complaining about anything so we thank you for your well wishes, thoughts and prayers.

So until later, good day and God Bless,

David and Diane

Wednesday, July 20, 2005 5:31 AM CDT

Hello Friends and Family,

Well we’re here today and gone tomorrow!

Not literally, but we just got the call from Memorial Sloan Kettering in New York, and Emily is finally HAMA negative and ready for her next 3F8 treatment, so while we have only been home for 2 days, we now have to go back. This is a big one because this will be her fourth cycle and that is the target number according to the doctors, to get four treatments inside of the two-year period. So, as always, we will do what has to be done and we will be in New York come July 25th.

As for our last trip, it was for her quarterly scans, and the procedures went fine. As the results trickle in, they are all negative, and we are now just waiting for her bone marrow aspirate results and her urine tests to come back.

As we said in the last update, the girls celebrated their fifth birthday on July 11, and while we did have cake and gifts, we did nothing too extravagant, as we knew we had to leave two days later for New York. This trip was a bit adventurous as the Ronald McDonald house was full when we arrived but through the diligent efforts of the Sloan Social worker (also named Diane) we got lodging, and made the most of our stay, we just got a little extra practice packing and unpacking.

It was especially unsettling going away this time because there was Hurricane Emily brewing out in the tropics and at the time we had to leave, there was still a good chance it was coming our way. So in addition to the normal hectic pace of getting ready to leave, we also had to put shutters up on the house so it would be protected should the worst happen, luckily it didn’t.

So now it’s time to pack for a much longer stay this time, and get back into the routine of Emily’s antibody treatment. We just pray for good results, minimal side effects, and hope that she keeps up the great attitude she has had throughout this process. I don’t know many people who could go through what she has, and still smile everyday when she walks into the hospital. She truly is a miracle.

So until later, take care and God Bless.

David and Diane

Wednesday, July 13, 2005 10:06 AM CDT

Hello All,

We are off to New York in just minutes, so this is a very abbreviated update.

The girls turned five Monday and Emily is feeling great.

We are going up for her quarterly scans, and we hope and pray to have the same results as past scans.

We will try to update again later when we arrive, so until then,

Take care and God Bless,

David and Diane

Monday, May 23, 2005 8:36 AM CDT

Hello Friends and Family,

As you can see, this weekend was Graduation from Pre-K for Emily and MaryGrace. This holds a lot of meaning for us on so many levels.

Aside from the normal emotions with seeing your babies grow up, we also contend with thinking back to where we were a year ago with Little Miss Emily. We had finished transplant and were into radiation treatments and couldn’t keep anything down her stomach. Now, she has a head full of hair and is eating anything in sight…as long as it’s not healthy.

We were also concerned about her education and whether she would be “up to speed” to go on into kindergarten after having missed almost an entire year-and-a-half of school. But her determination and the help of the excellent teachers at Rock Creek Academy get her caught up with the rest of the class in just five months and we are excited to see that she will continue forward into regular school this fall.

Tomorrow, we go for the fitting for Emily’s hearing aids and will hopefully go home with them and open up a world she has been missing out on (at least the part of the world between 2000 and 4000 mhz ). Subsequently, we will begin speech therapy class as needed, and get that polished up before kindergarten as well.

Friday, we meet with the transplant doctors at Shands Hospital at the University of Florida for her one-year checkup. She will certainly be returning in a lot different condition than she was when she left there. I’m sure they will be happily surprised at her appearance, appetite, overall health, and her clean scans ever since the transplant. We will stay there a few days since it’s a holiday weekend, and take in the peace and tranquility that is North Central Florida, and let the girls take in some Florida history.

So for now, it’s off for regular mundane errands that don’t have anything to do with doctors, hospitals, or drugs, and for that we are all happy. And lastly, how about that Afleet Alex in the Preakness Saturday ??? Until later,

Good Day and God Bless,

David and Diane

Friday, April 29, 2005 9:13 AM CDT

Hello All,

Happy Mother’s Day !!!

Well this Mother’s Day weekend has been pretty busy for everyone. In the morning, the girls took in their second gymnastics class and they seem to really enjoy it. It’s an hour of running, jumping, and bouncing that we don’t have to yell at them in fear of them breaking something…namely a limb. In fact the instructor, who is also a licensed physical therapist, says they are doing quite well. She said Emily needs to work on her jumping, but for almost an entire year, her mobility was limited to moving the electric hospital bed from the up to the down position, so we are giving her a pass on that critique for right now. The fact they enjoy it so much is reward enough.

Later, we placed a small wager on the Kentucky Derby in hopes “ Afleet Alex “ would win and a nice chunk of money go to “ Alex’s Lemonade Stand “ in the name of pediatric cancer research. As it happens, “ Afleet Alex “ did come in third, which is still considered to be “ in the money “ so we’ll see how much goes to the fundraiser. It felt good just to be a part of it all, and anyone who saw the feature pieces on the news about the owner of that horse and his commitment to Alex, her family, and pediatric cancer research overall couldn’t help but get all welled up.

Then we all loaded up and went to the baseball game courtesy of one of the directors of the Florida Marlins. I didn’t get her okay to print her name, but when she reads this page, she’ll know who she is. It was a lovely evening for the girls’ first baseball game, and we are most thankful for the Marlin's giving us this opportunity to bring the game they have only seen on TV to life before their eyes. Those who remember know that Emily became quite fond of baseball when she was in the hospital and the Marlin’s were in the playoffs and then went to the World Series. There were evenings that she even chose baseball over Spongebob Squarepants.

Friday afternoon, we had Emily’s post-surgery checkup and the doctor said her ears looked great, so we move forward with the hearing aids soon. In fact, that same morning we had orientation of the elementary school they will be attending in the fall and got to meet the special needs director who will be facilitating the special radio transmitter the teacher will use to talk into Emily’s hearing aids. So again, it’s been a busy few days, and we are looking forward to a relaxing Mother’s Day. So until later,
Good Day and God Bless,

David and Diane

Friday, April 29, 2005 9:09 AM CDT

Hello Friends and Family,

Emily has taken the first steps in the process of helping her hearing loss problem, and by looking at the picture above, you would never know that just hours before, she was in surgery.

Emily had to get tubes in her ears to drain out the excess fluid that has built up. For those of you who don’t know, she needs to get hearing aids, but they can’t fit and adjust the hearing aids properly until the fluid is gone. So, once the fluid is gone, she can get the hearing aids. Once she gets the hearing aids, she will obviously be able to hear and distinguish sounds much better. Once that happens, she can begin speech therapy. With the speech therapy underway, and correcting some of the problems that have arisen from this hearing loss, she will be ready to start kindergarten in the fall with all her classmates, and of course, her sister. This is the ultimate goal.

While we were very concerned about her missing almost a year-and-a-half of pre-school she appears to have made great strides in catching up in the education department. I think the biggest part of that is the fact she loves going to school and wants to learn. Her positive attitude continues to be her strongest asset. The teachers feel she has done fine, and Emily will graduate in a very elaborate ceremony with her classmates in a Pre-K graduation ceremony on May 20th.

The surgery itself went great yesterday, and it was wonderful to go back and see all our friends at Joe DiMaggio Children’s Hospital for just “regular” pediatric medical problems. Everyone made quite a fuss over her and it was almost to the point that we felt bad for the other kids there. But, she earned all that attention with her bravery for the scores of procedures over the past year-and-a-half, and the other kids will hopefully never have to know how to go about getting all that attention from the medical staff.

Next week we go for the actual fitting for Emily’s hearing aids, and she is excited at the prospect of wearing her hot pink “hear betters” and being able to hear all that she has been missing. So, we hope this surgery will be our last for some time, and we pray she remains healthy otherwise.

Thanks for all the prayers, thoughts, and concern, and please know we are thankful to those around us who have given us the strength to take on each day as well as the prayers that have been sent up and obviously answered.
Until later, have a great weekend, and God Bless,

David and Diane

Friday, April 22, 2005 9:59 AM CDT

Hello All,

It’s the end of another great week. In fact, every week we spend at home and not in a hospital qualifies as a “great week”.

All our results rolled in and everything is negative, so we made it through another cycle of scans with excellent news. We also went to our doctor here, and they said she looked great. What’s more, they even suggested that our required checkups be spaced out to every four weeks as opposed to every two.

Tuesday we attended the Make-A-Wish foundation’s volunteer appreciation dinner, and Emily and MaryGrace had a ball meeting all the people. The volunteers and executives got a kick out of them unknowingly going up on stage when Daddy went up to give his speech. The president of Make-A-Wish just sat down on the stage and the girls sat on his lap like they belonged there. The Make-A-Wish Foundation has done so much good for so many kids, and this evening was no exception.

Emily’s ear doctor called and she is set up for surgery next week to have tubes put in her ears to alleviate the excessive fluid. Shortly thereafter, her hearing aids (her hear-betters) will be in and they will be fitted, and then we start speech therapy.

Saturday we start gymnastics class, and both of the girls are very excited. Hopefully we can channel some of this energy they have and instill a little balance and grace to their wild recklessness.

Thanks to all of you who continue to write and call about Emily’s condition and we equally thank you for the prayers. So, until later,

Have a great weekend and God Bless,

David and Diane

Saturday, April 16, 2005 6:57 PM CDT

Hello Friends and Family,

Well, we completed another visit to New York, and the week back since then has been busy too.

For starters, Emily had to get her series of scans and tests, so first thing Thursday we were in the pediatric day hospital to see all our friends. That day started with blood work via an IV placement and once again she was a champ. We needed this, as she was to be sedated so they could do bone marrow aspirates/biopsies, then wheel her down for her CT Scan. Later that day she would then need to go for the injection in nuclear medicine for the test on Friday.

I think the hardest part of this whole process was repeatedly telling her she couldn’t eat or drink until later because of the anesthesia. She went almost a whole year of not eating but now that her appetite is back, she doesn’t want to hear that she can’t eat. This, combined with her age made for some interesting moments, but she was fine once she started playing in the play room at the hospital (pictured above) and food took a back seat to play-doh.

Once the scans were done, the IV came out and she was ready for a weekend of play without the tube in her arm.

Saturday, we went to Chinatown and Little Italy in New York, and had quite a time. That was followed by a visit to the new FAO Schwarz store, and then to NYC Disney and by the time we got back to the room, all of us were exhausted, so we ordered in and got a good night’s sleep before the travel day back on Sunday.

This week we hoped to get the results of all our scans, so we waited, but they came in very quickly. Emily’s bone marrow biopsies and scans showed no Neuroblastoma again, and we remain thankful as every negative scan series gives us renewed strength in facing the anxiety that comes with this process. There are a few more tests not in yet, but we are hopeful of equally good news. Her HAMA is positive again, so we aren’t going up for any 3F8-antibody treatments any time soon.

Tuesday we had a new hearing test and exam by the ENT doctor, and now a final fitting to order her hearing aids. As much as we might not want to face the fact she has permanent hearing loss, it’s real and has to be addressed ASAP. In addition, the doctor wants to put tubes in her ears for the accumulated fluid that is building in her ears. He said that even just doing that would improve her hearing and subsequent speech pattern. From there we enter into the labyrinth that is the school system and the county regarding FM transmitters for the teachers that will allow their words to go directly into Emily’s ears. Then once that is underway, we start speech therapy to get her up to speed before she starts school in the fall.

This week we are invited to the Make-A-Wish Foundation Volunteer appreciation dinner and are happy to attend. This doesn’t come without a price though. They want us, as the parents, to speak of the great experience that Make-A-Wish provided and while they did an unbelievable job of granting Emily’s wish, we’re not much for public speaking. However, people always say they wish they could “do something”, and this is our chance to thank this organization for the great, great job they did in making Emily have a dream come true and a week of absolute bliss.

We thank everyone for the thoughts and prayers, and hope that this web page at least lets all of you know that we appreciate you. Our strength comes from our faith, and our friends, and the encouragement derived from both.

Until later,

Good Night and God Bless,

David and Diane

Saturday, April 2, 2005 9:45 PM CST

HAPPY FIRST SECOND BIRTHDAY EMILY!

Hello Everyone,

Today is a special day for a very different reason. Today is the day that Emily got her second chance at a new life via her stem cell transplant that was done this day one year ago.

We were not aware of the magnitude of the event as we were busy attending to the side effects of her horrible intense chemo, and while we awaited this procedure as a lifesaver, failed to see it’s commemorative future value.

So, now we get to stand back and appreciate what that was, and think about what all the people involved had to do at Shands, and the great job they did.

We felt the best way to bring this importance to the forefront was to reprint where we were a year ago today, and let everyone see what it was that we, and Emily went through.

Friday, April 2, 2004 1:41 PM CST

Hi All

Greetings on day 0!! This is the 1st update, of several we hope to add to the web page today. Emily completed the first half of her stem cell transplant. They started it at 1:07, and it was done by 1:30. She will be getting the 2nd half around 5:00pm. They split the entire infusion up in two, because of the chemical additives necessary to freeze them. When thawed, it gives off an odor similar to creamed corn, or garlic, which is expelled in Emily over the next 24 hours. Anyway...back to Emily, she did FANTASTIC! She lay in bed quietly during the infusion, while 7 people stared intently at her. We were laughing at her mind thinking "why are all these people staring at me?" She really feels terrible today, the nausea has been compounded with the beginning of mouth sores (which by the way, go through her entire intestinal tract) which has led to a tummy ache and diarrhea. She also has a low grade fever, which they are expecting to spike sometime later. She basically feels awful, but these are expected, and the staff is doing everything they can to make her comfortable. She is now on IV Morphine to help with the mouth pain.

The stem cells were infused without incident, and we hope she does as well with the 2nd half. We will update again after that infusion, and expect to see some new pictures as well.

Thank you all, and Thank God for His care.

Love,

David and Diane

(Friday, April 2, 2004 8:52 PM CST)

Hi Friends and Family,

Well day 0 is almost finished, a day we looked forward to, and also dreaded. Emily sailed through the 2nd half of her stem cell transplant, although she did spike a fever of 102 immediately prior to the transfusion. Later tonight it went up to 103.1, and need I say, the treatment plan has changed, including blood, urine, and mouth cultures, antibiotics, and continuous monitoring. She remains on the morphine drip, so she pretty much is in and out of it. Her mouth is causing her a tremendous amount of pain. Sleep is healing, so I think her sleeping will help, especially after such an overwhelming day. The staff here has been wishing her "Happy New Birthday", and has encouraged us to remember April 2nd as the day she got a new life. It is a truly unbelievable event, and the body has a wonderful way of repairing itself. We are praying for engraftment to occur early. (when the stem cells actually start working inside the bone marrow, usually taking 10 days to 2 weeks) Up until that time, Emily will have no immune system, so her environment literally must be sterile.

We have already started to have difficulty doing Emily's mouth care. It is important to keep her mouth clean, because of the breakdown from the mouth sores, and also to keep extra bacteria out of her mouth. Her mouth care consists of swabbing an anti-fungal liquid and some numbing medicine on a spongy swab. She has more fear than pain, but is afraid to open her mouth. We are doing as best as we can, considering the 3-year-old temperament.

Tomorrow we move onto day +1. (it's nice to be in the positives!) Please continue to pray that the chemo side effects are minimal, and that she engrafts soon. Also, a special thank you to ALL of you who have sent Shands CareMail to Emily, and those who have sent cards to her. It makes her day to get those letters, and brings so much joy into her life. Thanks again.

Good Night and God Bless,

David and Diane


(BACK TO PRESENT TIME)

Now you all know why we are so thankful for Emily’s condition today, after what we lived through back then.

Thanks to all, and prayers to all we have lost recently. We continue to pray for all those around us as well as Emily, and continue to be thankful for all you have given us in thoughts and prayers.

Until later, Good Night and God bless,

David and Diane

Thursday, March 31, 2005 8:19 AM CST

Hello Friends and Family,

Sorry for the lapse between updates, but these past couple weeks have been quite active, and while we’re busy, we’re thankful it’s not illness related.

We seem to have gotten past the pneumonia and Emily’s cold is practically gone. So, hopefully, she will be in tip-top shape for our trip to New York.

Last week, we attended the Captain’s Dinner given by the Marina that did the fundraiser for Emily last year and as it happens, they selected to benefit Emily again for a second year because of her extensive treatment and our continuing medical and travel expenses. The people at Harbour Towne Marina have been doing this for 15 years, and we are so thankful that they have chosen to help Emily (and Emily’s parents) again, and from what we saw, it appears to be great fun at the same time. They have a fishing tournament each St. Patrick’s Day, or the closest weekend to it, and this year there were 166 entrants on over 60 boats. In addition to the dinner, we went to the weigh in and watched all of the fisherman come in from their day at sea with their prize-winning catch.

Emily couldn’t get enough of the boats, the fish, and all the people fawning over her and her sister. It was so nice to let her be outside and enjoy herself. We didn’t get to attend the tournament last year because it fell on the same day we had to go to Gainesville for Emily’s transplant, so we missed out. But this year we got to see first hand just how caring people could be, and they loved the chance to see Emily and add a face to the fundraiser.

We took in a lot of church during Holy Week, because heaven knows we have a lot to be thankful for, just look at where we were a year ago at this time. Saturday, the church had an Easter egg hunt and needless to say, it was mayhem, but in a good way. Then Easter Sunday was just dinner at home, and getting ready for the week ahead, as the following week we will be headed back to New York for Emily’s scans.

I am also auditioning my speech this week, and it’s a bit embarrassing. I have been asked to speak before the annual volunteer appreciation dinner for the Make-A-Wish foundation. I have to run through it before the powers-that-be to make sure that what I have to say is suitable. I guess they don’t want parents going off on a tangent, or getting morbid about their child’s disease and bumming out all the volunteers. There will be approximately 150 volunteers and staff attending, so I hope I don’t choke.

We sincerely hope Emily continues to do well, and we thank all of you who continue to cheer her on in prayer, and good deeds (you know who you are).

So until later, Good Day and God Bless,

David and Diane

Saturday, March 12, 2005 3:34 PM CST

Hello All,

Well, take everything I said the other day about not remembering the bad things, and throw it out the window!

Thursday morning around 4:30 a.m. Emily awoke crying, “I want my Mommy” and up we jumped. Mommy ran into her bedroom and she was burning up, coughing, and crying. We had no way of knowing what was wrong, but it conjured up all the memories of those midnight trips to the ER, and those memories came to the forefront of my mind like it happened yesterday. Emily in fact had a fever of 102.4 and her cough sounded horrible so we gave her Tylenol and a cough suppressant. We just wanted to get her fever down and keep her stable until we got to the pre-arranged doctor appointment we had for 9:45 that morning. While the visit was just supposed to be a checkup, the visit was going to take on a lot more meaning that day.

Once we arrived, our doctor told us we could get much faster emergency care if we went to the adjoining hospital’s ER, so he called ahead and got us a private isolation room in the ER. We did this so as not to further complicate things by exposing her to the South Florida population of “sick kids” in the emergency room.

Once we checked in, we watched TV in the room for no more than 5 minutes and there was someone there from transport to take us down to get a couple of chest x-rays. Emily complied as always and although it has been a while, she did fine, and we were escorted back to our suite in the ER. Shortly after returning, the nurse visited us who drew blood from Emily’s arm and again she was completely compliant and did not cry as the nurse fished around for a good vein. Lastly, they had to swab the back of her throat to test for strep, and that was no picnic. Emily went along with it because she thought they were putting the swabs under her tongue (like the thermometer just minutes before), but when they went for the back of her throat she was none too happy. I wasn’t happy with them “tricking” her because Diane and I have always taken great pride in explaining everything to Emily before it happens, but there may be no “good” way to do this and that’s how they have to go about it.

So now, we wait. The x-rays had to be read by the pediatric radiologist, and blood was sent out, as well as the strep screening test. So during this time we watched “Charlotte’s Web” for the thousandth time, and waited for the doctor. Near the end of the movie, Emily had fallen asleep, and the doctor came in to talk to me, and it was all that we had feared. Emily appeared to have Pneumonia in her chest x-ray and they immediately began an IV antibiotic to combat it. They also prescribed an oral antibiotic to give at home for the next 10 days and until the blood cultures are allowed to grow for 48 hours, there was nothing more they could do but wait. So they sent us home, and while her fever had gone down, she was very listless and uncomfortable, so once we got there, she laid right down.

She slept on and off the remainder of the day so we started her antibiotics, gave her a cool bath, and prayed for the fever to not come back. The next morning she was a new person, and while we had a follow up visit at the doctors’ office, she ran up and down the halls like she was never sick. She still had the cough, but no fever, and lots of energy, but in spite of it all, the doctor confirmed that it definitely was Pneumonia. Once her blood work came back, it appeared her health was moving in the right direction, and we were sent home with what looked to be a healthy & happy girl, and there was nothing more to do until we let the antibiotics run their course.

Saturday morning however was another story. She slept two hours longer than she normally does and when she finally came downstairs, she was crying and the magic number of 102.4 was back again. We immediately gave some fever reducer and called the doctor who was on call that day, and told her of this setback in her condition. While the doctor did not sound alarmed, she encouraged us to keep her drinking and monitor her temperature. Her blood cultures were all negatives as well as her strep screening, so that pretty much has ruled out any other reasons for the fever, so we can only wait. She is not as bad as day one, but she is not herself, and as soon as the fever reducer wears off, the fever jumps right back up.

So for now, we wish we had more cheerful news, but this is just another of many curveballs we have been thrown, and as in the past, we will get through it. We will continue to pray that this is nothing more than what the doctors have found, and trust in the Lord to give us the strength to help us help Emily.

Until later, Good Night and God Bless,

David and Diane

Tuesday, March 8, 2005 8:25 AM CST

Hello Friends and Family,

In keeping with the idea that “no news is good news”, there really isn’t that much new to report.

As of this point, we are into the second week of the LAST cycle of Accutane for Miss Emily and we are happy that we are progressing. We are happier that we don’t have to subject her to this mind/emotion-altering drug any more once this cycle is complete. Another milestone is behind us now, and it went by like a flash.

Diane and I were commenting the other day that although it seems we have been dealing with this forever, there were big milestones that we almost can’t remember anymore, as if they were just small blips in the road of life. It seems like you block out all the bad things and you just start marking days off the calendar and rejoice in every day further we have come since the day Emily was pronounced to be free of disease.

We went to the Scottish Festival and Highland Games Saturday, and the girls loved it. The bagpipe music, all the colors and flags, people, and just being outside was a lot for them to take in. They even got to see Billy the Marlin (the Florida Marlins mascot) in his kilt, and he posed for pictures with them.

In April, we go to New York for Emily’s quarterly scans. It will be a short visit, but we do always have fun when we go, provided we don’t have to endure another “blizzard” this time. Then, in May, we go to Gainesville to meet with her transplant doctors at the University of Florida (go Gators) and they will examine her for her one-year follow up. Once again, all of you who remember what a nightmare transplant was and now to think a year has passed already is truly amazing.

We are anticipating good results from both visits, and continue to hold Emily up to the Lord for daily miracles in her recovery. As always, we thank all of you for your thoughts and prayers as well, and are happy to give you evidence of prayers answered in these updates.

So until later, Good Day and God Bless,

David and Diane

Saturday, February 26, 2005 3:21 PM CST

Hello Everyone,

Who ever would have thought a year ago, Emily would have a head of hair like this ?!?

As you can see, Emily is adjusting to “normal-life” pretty well, and she took it upon herself to find some of Mommy’s curlers and have a beauty night after her bath. School is the same, and she and MaryGrace love going so much so they have to constantly be told to stop running in the halls because they race to be the first one in the classroom.

We also got some more very good news from Sloan-Kettering this week. They ran an immune function test to see when she can really be considered “back to normal” but the results take a while to come back. As it happens, her test results were WNL (within normal limits) and the doctors there in New York have recommended that we discontinue all antibiotics, antiviral and anti-fungal medicines she is currently taking. Of course this is a big step and we have to get a few more blessings before doing this. Primarily we need to run it by her doctors here as well as her transplant doctors at the University of Florida where she will be due for her one-year follow up in April.

With this news comes the possibility of getting her feeding tube out sometime in the late spring when she has completed her last dose of Accutane, and all her medicines are discontinued. Nothing is guaranteed though, so we’ll just keep our fingers crossed and continue to pray for more good news.

Thursday we went for our checkup, and Emily’s counts looked great, so unless something goes wrong, we are on a regular every-two-week visit schedule. This should make life a lot less hectic. Our next trip to the big apple is going to be the first week of April, and it will be for her quarterly scans to make sure the cancer is not trying to regroup and come back. There is always a chance she could be HAMA negative and then we would have to get her last 3F8 antibody treatment too, but if experience is any teacher, we still have a while before that happens.

We also got some very unexpected news this past month. The fine folks at the “Harbour Town Marina” have decided to have their 15th Annual St. Patrick’s Day Charity Fishing Tournament to benefit Emily for the second year in a row, and we couldn’t be more shocked and elated. She evidently touched a spot in their hearts, and since she is still in treatment and having to fly back and forth to New York, they felt, "who is more deserving than little Emily”. Once again, prayers answered and in this case, pennies from heaven, and we are most grateful.

Thanks for all the thoughts and prayers from all of you who take time out of your day to check up on our little Emily.

So until later, Good Night and God Bless,

David and Diane

Wednesday, February 9, 2005 4:50 PM CST

Hello Friends and Family,

We’re home, we’re warm, we’re happy!

While it seems like we were gone forever, we have settled back into our routine as of we had never left.

We got additional results from Emily’s doctor in New York and as it stands, her bone marrow aspirates and biopsies were clear of any Neuroblastoma. In addition, a specific staining test was done that singles out the Neuroblastoma cells (if there are any) and that too was negative and shows them to be free of disease. It’s almost too much good news and we’re awaiting the caveat.

Emily is back in school, and she loves it. Her hearing loss has not had the negative impact we thought it would, and the teachers really don’t have to go out of their way for her. In fact, they continue to tell us that in addition to learning quickly, she has more energy than every other kid in class. While we welcome the news of her recovery in the tests done by the doctors, you can see the biggest part of it in her happiness, energy, and overall health.

Over the weekend we went to a festival put on by the “Love Jen Foundation” which is a charitable foundation that assists families of children with cancer. The founder is a wonderful man who we were put in touch with through the hospital and we learned that he lost his daughter to Neuroblastoma. Throughout Emily’s treatment he was a great source of inspiration and a monument to the idea of moving forward in the face of adversity. The fact his office was just steps from Emily’s room in the hospital made him an easy person to contact also. At the festival the girls had face painting, pony rides, games and just about every junk food known to man.

Emily had a doctor’s appointment on Tuesday, and her counts are climbing right back up as the 3F8 treatment tends to bring them down, but they said she looked great and in just hours, she was back in school. On the way to the doctor though we had quite a shocking revelation. The day of her appointment we had to take one of our cats to the vet. So, when Emily got in the car and saw the cat already there in her carrier, she knew that the kitty had to go to the doctor too, and decided to make her feel better by talking to her. It went something like this, “it’s okay kitty, you have to go to the doctor, and get an owwie (a shot) then some blood (a finger stick to check her blood) and then they have to give some medicine in your tubie (her central line) and then you do spitted (our code word for vomiting during chemo treatments) and then you’ll feel better”. This was shocking in that we are now really starting to wonder just how much of this nightmare she does remember. As gruesome as a lot of the treatments were, we had solace in the fact that she would not remember, but it appears she may have been aware of much more than we gave her credit for. But, we figure, she doesn’t get upset talking about it, so it must not be that bad in her mind. In fact, she’s actually using her recollections to counsel the poor kitty, so even if she does remember, she’s putting it to good use.

Many thanks again to all of you who continue to pray for Emily, and we just pray this streak of good news and good results continues. So until later,

Good Night and God Bless,

David and Diane

Monday, January 31, 2005 12:58 AM CST

Hello All,

We survived the “Blizzard of ‘05”!

Friday started out like every other morning this week only with two less people now that Diane and MaryGrace are safe at home. Thank goodness they left when they did because the weather forecast is growing more and more treacherous by the day. We headed off to the hospital in comparably cold weather but the whole city is buzzing about the “blizzard” that is coming, and I guess we have yet to see just how can cold can it actually get here.

Emily checked in and then ran to the IV room to offer her up her daily sample of blood and the nurses all continue to be amazed that this little child not only doesn’t cry during these procedures, but doesn’t even want Daddy in the room while it’s being done. They have called it the “Girl’s Club” and there are no daddies allowed. Then, she comes running back out sporting her new band-aid as if nothing happened and informs me that she will be in the playroom, and that I should stay out in the waiting area and work on the computer. Translation…I want to play alone so quit following me around. I thought the whole parent embarrassment thing didn’t start until middle school, but I guess I was wrong.

Shortly after Emily had started her playtime, the nurse came in and said they were ready to start. At those words, she said “okay” and started running toward her room, however I was not quite as enthusiastic. I got a lump in my throat thinking about the fact I was facing this alone but knew that this was my job, so I shook it off and headed in there myself. We began with the increased medication, and she was loopy in minutes. I tracked the time closely as I wanted my hand on the buzzer when that pain hit, and we waited. The infusion was done, and the flush started and usually within minutes now, the crying will start. But not this time. There was a lot of crying and temper tantrums, and moaning, but not the guttural groans that come from the 3F8 reacting in her body, in fact, now I think it was all just the narcotics.

After the cycle was over, I dealt with my little “Meredith” and walked on eggshells so as not to upset her in any way. I mean, she’s such a basket case when she is done with this, she even cried because they wanted to remove her IV for the weekend. Not because it hurt, she just didn’t get her way and that doesn’t fly when she’s in that state. We walked back to the room and I continued to try and satisfy her demands the whole way, from requests for apple juice and Dora cookies, to walking on the other side of the street, because the side we were on was “too loud”. Once back, I blackened the room, put on Nickelodeon, and said nothing unless it was to agree with her about something, and even then, I was wrong. “Emily” was back with us around 5:30 and she wanted to go to the playroom at Ronald McDonald House so we did. It is a nice retreat for her, and it allows me the only Internet access I have while in New York. After we were done there, back up to the room for a much needed good night’s rest.

Saturday morning we awoke to television news reporters predicting everything short of the end of the world with the impending blizzard and having never lived in snow, I have no idea what to expect. If I were to go by what I saw on TV, I would burrow down into the ground for about a week and not come out. With all that in mind, I decided to bundle Emily up and go out in it. That probably sounds as dumb as those kids you see surfing just hours before a hurricane is about to hit do. Actually, it wasn’t that bad, and was actually warmer than it had been the week prior. We went to Circuit City as I discovered that our laptop is good for more than just writing Emily’s updates or playing solitaire…we can play DVD’s on it. That’s right, Daddy might actually be able to change the channel on the television that has been locked on to Nickelodeon since we arrived. So I figured some headphones for her to view movies on the computer would be perfect. At the same time, I wanted to get a new wireless network card in hopes I could use the Ronald McDonald house system for Internet access for the laptop. I was one for two. The headphones worked great, but after hours of installation, I couldn’t get the network card to work, and was as frustrated as ever. I later found out that the system at the McDonald house wasn’t working so my buying this card may have been for nothing.

We got home five minutes before the snow started, and it really started. All at once, like someone turned a switch snow was covering the ground and it continued on into the night. I decided to take Emily downstairs and at least play in the snow on the sidewalk (photo above) and she loved it. Problem was, she was soaked in a matter of minutes and it was back upstairs into a hot bath.

Sunday morning, the city was silent. The streets were white, and there were no cars, no people, no nothing, just still quiet white nothingness. We were in for the day, so I am praying for Emily to be in a good mood, because there are no outside diversions today to calm her. One thing I didn’t mention was the medicine I have to give her over the weekend. The narcotic she gets for pain relief during her week of treatments (Dilaudid) is very addictive and so to prevent withdrawal pains and discomfort, I have to give her a little dose on Saturday and again on Sunday. This is the stuff that brings out the mood I have spoken of, and I have to just hope it hits her the right way, or it’s gonna be a long weekend. They had a movie downstairs at the “House” and that was a nice getaway for a couple hours. So basically, we watched movies, did laundry, and waited for Monday and had lots of bonding time.

Monday started out good, but walking to the hospital in dirty snow/slush filled streets was a nightmare. Then, add to that I’m pushing a stroller with all our stuff for the day, it was no picnic. We got to the hospital, went through the routine, and once the treatment started, we waited, and much like Friday, no pain, so no gain. It was looking like the treatments upcoming were going to be all for naught. The doctors ordered a test with this day’s blood to see if she already had developed the antigen, and if so, they said they would stop the treatments this week, there is no sense in going forward if the drugs would have no effect.

Tuesday was similar to Monday in that we went to the hospital, and went through the motions, but for the second time in, as many days she had to get another IV. While she was a trooper, I almost wanted to cry myself as she continued to get stuck and her little spirit shone through and she told the nurses “that’s okay” prior to us heading to the room for her gruesome treatment process. The biggest difference today, if she was indeed HAMA positive, today’s treatment would be fruitless, so this afternoon we would know. Since these were our assumptions, I asked the nurse to give half the dose of pain pre-medication. This was a good move because if the drugs do not have pain to target, all you have is a drugged up kid for 5 hours and that’s no fun for any of us. The treatment went as expected, and there was no pain. While on one hand you welcome not having to watch the torture, but on the other it’s sad knowing that this is the end of the treatment for her. Later that night I was called from the doctor’s office and sure enough…she’s positive. Now the race to see if I could get the airline tickets changed without paying more than we did for them originally. The doctor wanted to do another bone marrow biopsy, so we would do that on Wednesday and try to fly out Thursday.

Wednesday we were at the hospital bright and early so we could get her in for the procedure and she could finally eat. The poor thing had nothing since dinner the night before so I hoped it would be soon. What’s more, I had to get back to the room to pack. At 3:30 p.m. they were ready for us and I challenge anyone to keep a four-year-old entertained who hasn’t eaten in 24 hours, much less coerce them into going into the procedure room voluntarily. For the first time I saw Emily get scared, and she wanted nothing to do with that room. She has never said “no” to a procedure of any kind before, but maybe now as she grows older, she is beginning to develop memories and realize consequences of these things. So after some crying, and a lot of toys and stickers later, she got up on the table, and the anesthesiologist let me hold her until she went under. No matter how many times you do it, it is still very creepy to see that injection knock your child out so quickly. Then to position her lifeless body for the procedure adds to the experience of just how under she really is, but you have to do it. When she awoke we went to the playroom until I was sure she could function okay, then we trudged back to the room.

Thursday is here and we’re going home. I packed up the room and did the obligatory checkout chores as required by the Ronald McDonald House, and we went downstairs to wait for our car. Mommy met us at the airport when we landed, and when we got home, Emily finally had her playmate MaryGrace back. The twins bond will always be there, and you can really see it at times like these. Friday morning, she couldn’t wait to join her sister in going off to school and she was welcomed by a classroom of screeching four-year-olds that were as happy to see her as her sister.

We have gotten the results of Emily’s bone marrow biopsies, and all were free of any Neuroblastoma whatsoever. Another round of prayers has been answered and they continue to be daily. Thanks to all of you who help us along the way and make this journey a little more tolerable, and especially for your thoughts and prayers.

Until later,

Good Day and God Bless,

David and Diane

Thursday, January 20, 2005 4:49 PM CST

Dearest Friends and Family,

Welcome to New York !

January 17, 2005:

We awoke to a snow-covered street this morning and it was still snowing when the girls got up. Since they had never seen snow other than TV or from a big machine in our front yard, they were most excited. Needless to say, it was quite scenic…from indoors that is. Once we started out on our seven block trek to the hospital for our first day of treatment, we got to see what COLD was. It was in the twenties with the wind gusting in our faces, but we tried to brave it and make snowballs with the girls like it didn’t bother us. The girls loved it, Diane thought it was refreshingly cool, and I just wanted to get indoors to some basic creature comforts like getting my core body temperature back up to normal and some coffee.

Once at Memorial Sloan Kettering, it was business as usual and we picked up as though we had been here the whole time. Everyone still remembers Emily, and we got right down to it. We checked in, then we had to get blood work and for those of you keeping track, this was about to be an adventure unto itself. Again, she no longer has her central venous line, so that means this little four year old girl was going to have to put her arm out and bite the bullet while they started a new IV for treatments and blood draws this week. She did so and she was all business. In fact, the first one they put in, they couldn’t get an adequate blood return from, so they had to start another one in the other arm, and see which would be better. All of this combined with a finger stick for blood tests, and Emily never so much as whimpered, much less cried and we remain very proud of her for that.

We then went to the playroom, and the two of them carried on like it was Christmas all over again. Then it was time for the once over from the doctor before starting the treatment, and Emily checked out fine, and they said her counts looked great. A few more minutes in the playroom then off to our bed assignment to start. The procedure went as usual, but the pain was pretty severe, and narcotics are once again flowing through her veins in an effort to mitigate it as much as possible. Once the round was over, she slept about an hour and awoke groggy and moody. Once she took in her surroundings and realized where she was, she demanded to go back to the playroom, but when she stood up, she was as wobbly as a newborn horse, and so the answer was no. Our best option at that point was to load up the girls and head back to the room, and let Emily sleep. Depending on the amount of pain relief (narcotics) she got for the day regulates how much she sleeps when we get back. Although she faded in and out of her slumber for several hours, she wasn’t right until around dinner time, so we went to the playroom at Ronald McDonald house, and the girls picked up where they left off earlier that day. Once we felt they had enough, we went back upstairs and thought we were going to put them to bed. But since they both had three hours plus naps, sleeping for them was out of the question. So we ordered our take out, and while we ate, the four of us watched Nickelodeon until we couldn’t take it anymore, we put on the news. The girls got bored and went to bed.

January 18, 2005:

Day two has started, and shame on me for complaining about yesterday’s weather. It was 12 degrees today as we walked to the hospital, and it was to the point that New Yorker’s we’re saying it was “too cold” to go outside. I felt redeemed for all my whining about how cold it was after hearing that the people that live here didn’t even like it. What was worse, the day was all cold and no snow. We braved the walk and got to the hospital good and early, and since Emily’s IV was already in place, all we had was a finger stick and head to the room to start. Aside from a detour to the playroom, we were underway, and things progressed pretty well until the pain set in.

During the treatment, Emily is connected to a pulse rate monitor, and as the pain begins to escalate, her heart rate increases exponentially. So, we try to track when it looks like she is starting to have pain and then call the nurse for a “rescue dose” of her pain medicine before it really sets in. However, Emily has developed this very bad condition, and while we saw it yesterday, we had hoped it was a one-time incident. Problem was, it’s not and the thought of it continuing is most frightening. In addition to the pain, the doctors have discovered that there is also some pressure on the chest that occurs and it feels like you can’t get your breath. To an adult, that would be distressing, but to a four-year-old, it’s downright scary. In the face of this sensation, she begins to gasp and try to get her breath, and when she can’t she panics and then stops breathing altogether. The first day it was a few seconds, but for those seconds as you are watching the heart rate soar and the oxygen level plummet, it feels like hours. Today though, it was much more violent and lasted much longer but we got her breathing before she passed out, but she was blue in the face and this was now a very serious problem.

The nurse was going to take this problem to the doctor as well as speak to a specialist in “Guided Imagery” to see if she could work with Emily to get her into a “Happy Place” so she could cope with the chest pain a little better. However, one of the nurse practitioners likened it to a woman giving birth. Once that pain sets in, all that stuff you practiced goes out the window. We are very fortunate to have even found out about this chest pain/pressure issue because were not aware of it prior to this visit. It seems that there is an adult patient getting this (or a very similar) 3F8 therapy treatment and he was considerate enough to chronicle all of his side effects and pass them on to the doctors & nurses. We are quite grateful for the dissemination of this information as we would have had no idea what Emily was doing, and certainly would not have known what to do about it. So after all the excitement, Emily slept a while in her bed, and when she awoke, back to the room to sleep some more and try to keep MaryGrace entertained. That evening, we practiced deep breathing exercises, and Diane told Emily, “when the tummy ache comes, we take nice deep breaths”. We drilled this into her head, and repeated it all night.

January 19, 2005:

I hate to keep focusing on the weather, but today is colder than yesterday, so we finally opted for the shuttle that runs from the Ronald McDonald House to all of the local hospitals, and Memorial Sloan Kettering is the first stop. It was toasty warm, and took just a few minutes in a car. Once we were checked in, Emily proudly showed everyone how good she could breathe, and we all hoped this would stay with her in the moment of truth, or moment of pain actually. The nurse told us she took our situation to the doctor, and the suggested remedy was to increase the pain medicine in her “pre-meds” and have a dose of Benadryl on hand for when the breathing constriction seemed to kick in. The hopes were to head off the side effects before they got too bad. All of this combined with her breathing exercises made for a successful treatment and no turning blue today. It was most painful for her though, and as I have said many times in the past, you question all of your decisions as you watch her going through this in such agony. It’s a trial study and we are putting her through such torture in the hopes that it may help, meanwhile as she cries we stand there and comfort her, rub her, get warm packs for her stomach and back, and pray that we made the right decision. Our nurse was excellent, and laid half on the bed through the whole “peak pain” period, and was quick with medicine and when she wasn’t giving drugs, she was comforting Emily, holding her hands, talking to her, whatever it took. Mommy comforted as well and held her oxygen close to her nose & mouth, and coached that constant breathing. She screamed a lot, and looked as though she could have slipped into one of those fits from the days before, but with all the extra attention, she never did. Looking back at it, I don'’ really know what I did all this time. I stared at the monitors, and made sure all the numbers were where they were supposed to be, worried a lot, and ran to get things when asked. Staring at the monitors is a funny thing that I think a lot of parents fall into doing. If you are in a situation where you really can’t do anything, there is some sort of weird empowerment in watching the monitor. As if you are really in control because you’re watching the monitor, but fact is, you’re not. The monitors are all pre-programmed with levels that if the patient goes below, an alarm goes off, and so staring at the stupid screen really does nothing at all. Well, now I have just admitted that I was in the height of fear about my daughter’s health, and at the peak, I was doing nothing…at least I’m aware of it. We made it through in large part to the nursing staff and my nursing wife, and we let her sleep afterward until she woke on her own.

After going home (back to the room), we had to endure the obligatory three to four hour sleep period where the narcotics wear off. This is time where she dozes in and out of sleep, and when she’s awake she’s nasty (Meredith for those of you who remember) and when she’s asleep, it’s not for long. So I copped out, and decided to go run errands and took MaryGrace with me. Five minutes into our walk, it started to snow (mind you, it hasn’t gone above twenty degrees in the past three days) and while it was a bit of a pain, she loved it so we took our time, and she reveled in catching snowflakes. After Emily woke up, we went to the Toys-R-Us in Times Square and that is always a big event for the girls. To make it even more special, the snow was really coming down now, and with all the lights, they were thrilled to see it. The Ferris wheel in the center of the store is the highlight of every visit, and even if you never bought a toy, they have a ball just being there. Once back, we went to the playroom for some recreation for the girls, and when we came back to the room, we practiced our deep breathing again, and braced ourselves for the next day.

January 20, 2005:

In keeping with the weather updates, today is a balmy 22 degrees. Get the suntan oil! It was, of all things, nice and we walked to the hospital ready to take on this mission once again. Only today, there was a level of anxiety on my part that I could not hide. I knew that whatever went on today, tomorrow I was going to have to face it alone and after the first two days of this week, I was petrified. In the past, I have never been afraid to admit that a large part of my being able to handle a lot of the difficulties that have come with Emily’s treatment was because I have Diane to lean on, and not just the nursing stuff either. Everything from decision making on treatment, to talking with the doctors, to handling Emily while she’s on narcotics, to just getting through each day. I know those of you who have been reading these updates for a while have heard this all before, but when she leaves, it is a big event. It’s like losing half your life all of a sudden, and you awake the next day with all the same responsibilities, but only half the resources to handle them. I am without my wife, my lover, my closest confidant, my daughters’ mother, and my partner in caring for Emily. In all of that though, we have decided that it’s not as bad as being the one leaving. Diane is left to board that plane with MaryGrace knowing that from that point forward she has no way to help in caring for Emily until we get home. All of the care, decisions, conversations, and nurturing are out of her reach, and all I can do is try not to let her down, and bring Emily home healthy.

We got ready for our cycle, and ate breakfast there in the waiting area as we knew there would be no snacking once we got underway, and all of our attention would be on Emily. She had to get blood drawn, and her IV didn’t give up any, so they had to stick her other arm, and she was once again a trooper. We went straight to the room, and waited to see what these drugs were going to do to our little girl today. We used to think that she had no memory of these treatments because the drugs are so strong and her age. Fact is, she very much remembers. We tried to coach her on her breathing exercises before we got started, and she abruptly said, “No Mommy, I don’t have a tummy ache yet”. She told us that when her tummy hurt she would breathe deep and the nurse would give her medicine and she would go night-night. The fact that we realized she is aware of all of this, including the pain, makes this treatment even more heartbreaking, and we have to keep reassuring ourselves that we made the right decision.

So we started, and now we watch the clock and wait for signs of anything. The infusion was complete after thirty minutes, and usually within five minutes from this time, the pain starts and there are only minutes to act thereafter to head off an episode like we had early in the week. At this point, there is no more drinking coffee, no more talking, just watching and waiting. I stood in the doorway of the room with direct eyeshot of our nurse because I wasn’t going to rely on a buzzer for the response we needed today. The nurse then started to flush the line, and anytime during this process, the pain could start, but now another dilemma crops up. Diane has to go back to the room soon and begin packing to leave, and the horror hasn’t started yet. So we just wait, and the flush continues (this also is about 20-30 minutes). Diane finally needs to leave so I am now on stage and I figure I am going to have to face this alone be it today or tomorrow, and we agreed she should go. The whole process finished but she never experienced the horrible pain and while she was a bit uncomfortable and whiny, that could have just been the effect of the drugs. Emily never even fell asleep, so I now have a child who was loaded up on extra doses of pain medicine, but never got the pain, and that equals one whacked out kid. So rather than encourage the sleep today, the nurse checked her out, and said we were okay to go and off we went to the room to see Mommy before she left. Diane finished packing, and that familiar somber came over us, as the time approached we would again be separate as a result of caring for Emily. We called the car service, and there was nothing left to but say goodbye, and try and get Emily to sleep, because she was not comfortable in her own skin. Well, it’s now about 6:00 p.m. and she has been asleep since around 1:00 p.m. and she looks very peaceful.

The possible theories as to her not having any pain are pretty limited. Either the pain medicine just worked great (doubtful) or she has HAMA’d again. In other words, she has already developed the antigen to the drug and she is no longer really able to experience any benefit from continuing the treatments. We will do it again tomorrow, and then they will take out her IV, and send us off for the weekend. They will test her blood Monday to see if she got a HAMA already and if so, they will scrap the second week of treatment, so we just have to wait and see.

Whatever the outcome, we are doing our best, the doctors are doing their best and Emily is doing her best. Everything above that is out of our hands and in HIS hands, and we opt to not make ourselves crazy trying to figure out why. That’s the wonderful thing about faith, it allows us to accept the unexplained, and have peace to take on the next day, and accept the next miracle. We know that Emily’s miracles are prayers answered and we thank all of you for continuing to pray for her. The fact you continue to read about her here tells us she is in your hearts and we will never forget those around us who have helped us along the way. So until later,

Good Night and God Bless,

David & Diane

Sunday, January 16, 2005 6:23 PM CST

Hello Friends and Family,

Well, we’re back in New York and this time for a very good reason. Albeit just days after returning from our previous trip, we are glad that Emily is able to receive her next antibody treatment. We are fortunate that her blood has allowed us to get her the third such treatment out of a minimum recommended four to be fully effective.

Our trip was pretty hectic as we opted to fly up on Saturday (instead of Sunday) and were met at the airport by the passengers of five large cruise ships that had all come in to port that morning. As a result we, along with thousands of tourists, waited for hours just to get past the curbside check in. Then, only to find we were going to wait even longer to get through security with all these same tourists carrying their sombreros and undeclared Cuban cigars and illegal liquor. It looked hopeless but with the appropriate amount of badgering the TSA workers, we got pulled out of line, screened, and sent on the way to our gate. When we arrived, they had boarded all but about ten rows and were calling us to board ASAP.

We got to the Ronald McDonald House, and settled in, and had Sunday to do with as we pleased, finally a non-stress day. Sunday was cold, but we headed out anyway, and had brunch then walked and did some minor house ware shopping. We made it a very leisurely day as we have a very intense two weeks ahead of us.

Tomorrow (Monday) begins Emily’s 3F8 treatments, and we don’t quite know what to expect, but we know we are in the best of care with this fine oiled machine that is Memorial Sloan Kettering. Especially since we were just here a week ago, we sort of prepped them for our visit. So now, we start the cycle, and hope she gets the pain that comes with an effective treatment, but not so much that she gets upset. You see, we have reached a difficult part of Emily’s life/treatment as she is becoming more aware of the consequences of these procedures as she undergoes them. Now that she is getting older, she can reason things out and say “hey, that hurts when they do that” and she then doesn’t want to necessarily revisit something that she knows is going to be painful. So, a lot more reasoning goes along with each procedure and visit, and we have to stick to our long standing policy of honesty with her, and maybe make her do things she may not like, but at least she is aware.

It reminds me of the quandary we had the other night at bedtime. Emily was being put to bed and after their prayers, I said good night and she asked why I didn’t hook up her “milk”. This question referred to the tube feeds that she has gotten for almost a year and a half, but we have not given her for several weeks now because she has been eating so good on her own and she didn’t understand why we were not doing them now. With that, she tilted her head sideways, looked at me with the biggest blue eyes and said, “Daddy am I getting better? “ Now I welcome anyone to tell me how to answer that one when dealing with cancer. Let alone dealing with a cancer aggressive as this one. Once again, with all the honesty we have given her to date, it was explained to her that every day she is getting better, and as long as she eats during the day, we don’t need the “milk” anymore. But with the treatments she is about to undergo, eating becomes the last thing on her mind, and we’ll have to just see how it goes from here.

So, we will attempt to update as soon as things get started, but as things have gone throughout treatment, time sometimes gets away from us, and we are not able. Please know that no news is good news in this instance. We thank all of you for the wonderful thoughts and prayers that continue to come our way daily, and ask that you share in our joy as we witness prayers answered every day when Emily is running around, being a kid now.

Until later, Good Night and God Bless,

David and Diane

Tuesday, January 11, 2005 9:55 PM CST

Hello All,

We have nothing but good news this time around, so please forgive our elation.

We returned home from Emily’s scans and we had nothing but horrible weather while we were there. Granted, this is a sliding scale being from Florida and to us anything below 70 degrees is cold but the temps and constant rain made this visit quite a challenge. Everywhere we went we had to stop and bundle up the girls (as well as ourselves) before we went out, and then maneuver the strollers, umbrellas, and miscellaneous toys to our destination. We had the routine perfected right about when it was time to come home.

Landing at the airport in Florida reminded us why we live here, and although that warm tropic air hit us in the face as soon as we got off the plane, it was the return of a welcome friend. Much “props” to the people at Delta “Song” Airlines who not only donated the tickets, but also had private TV screens in every seat and kept the girls occupied the whole trip.

Our visit at Sloan Kettering was nothing less than perfect, and it was so reassuring to see people after almost 3 months of not being there and having them walk up to Emily and call her by name. Needless to say, we went through all of her scans without incident, and the results are the cause of our aforementioned elation.

Emily’s scans were negative (bone marrow aspirates, CT scans, and MIBG) and as of this evening, she is HAMA negative. For those of you in the cancer world, you know what that means and for those of you lucky enough to not be in this world, this means Emily can now get another treatment that we feared would not be for some time.

We will be leaving for New York again soon, and we will update when we have more specific information. So, we again thank all of you, who have helped by praying for Emily, because God is answering the prayers.

Until Later, Good Night and God Bless,

Love,

David and Diane Adamson

Wednesday, January 5, 2005 10:07 AM CST

Hello Friends and Family,

Well, with the holidays behind us, now we can get back to some sort of normal living…Oops, spoke too soon. We’re off to New York for Emily’s quarterly scans at Sloan Kettering, and will be gone until next week.

Emily’s regular checkups here have all been good, and she is not only holding her weight but also actually gaining now. So, the next round of good news will be all of these scans being clear and negative and this is what we are praying for. Every set of scans she has had since June have all been negative, so we do have some encouragement there, but we also know that nothing is guaranteed. Therefore, we continue to monitor her closely, and just pray the monster does not return.

We have to face the idea of cold weather and packing for it becomes quite an adventure, especially when you are a Floridian. Winter clothes are much bulkier than our usual attire so even though we’ll only be gone for 5 days, we look like we’re going for a month. At least if we have to contend with the weather, maybe we’ll get snow for the girls to play in, and that will make it all worth while.

So, until later, please pray for continued good results, and Happy New Year to all of you.

All our love,

David and Diane

Thursday, December 23, 2004 7:35 AM CST

Seasons Greetings Friends and Family,

We are in full swing this holiday season, and are just glad that we are able to spend it at home this year. For those of you that remember, we spent our last Christmas on the floor at Joe DiMaggio Children’s Hospital, and it was so slow there, they actually closed the floor Emily was on, and moved us to a semi-private room on the other side of the unit. Well, at that time, Emily was so immune suppressed we were ready to put up a fuss about her having to share a room when they told us we could have the whole room to ourselves. So, we made the best of things and treated the room like our own private suite and decorated the girls’ half of the room, and kept the other half for the adults to “ dine & entertain “. We ordered take out and had a great Christmas Eve dinner in the room while the girls watched Christmas specials in “their room”.

We have been trying to make up for lost time this month, and Emily has been on a whirlwind tour. After her Make-A-Wish and all the parks, we were back home and have taken in every event and party that has been available to her. Last Saturday, we went to the Miami City Ballet’s production of the Nutcracker, and the girl’s loved it. Although it was a letdown from the animated Barbie version they have been watching the last few months, they got the idea. Today, we will be going to Gilda’s Club for a snow day party, and it will undoubtedly be a great time for Emily.

Once the holidays are over, we will be going to New York for Emily’s quarterly scans, and while it will be cold, it will certainly “feel like Christmas” in a sense we don’t really get to feel here in South Florida. We have faith that her scans will continue to be negative, as they have been ever since June 16th, when Emily was declared to have “no evidence of disease”.

As of today, we go in for a regular checkup with our doctors here, and we are now on every-two-week visits as long as Emily stays healthy. In fact, we may go even longer between visits in the near future, depending on how things go.

Then, we start the countdown to Christmas, which is every child’s dream. The seemingly endless mountains of food, Christmas carols, and of course…presents. We can be certain this year that our greatest gift under the tree will be wrapped in flannel pajamas, with a few less tubes, a few more scars, a short haircut, and a smile to light the whole house. Emily’s continuing recovery is truly a miracle, much like Christmas itself, and we are most grateful.

So, to everyone we wish you a very Merry Christmas, and thank all of you for your support and prayers this year.

David & Diane

Friday, December 10, 2004 9:55 PM CST

Hello Friends and Family,

There is what seems to be a naturally recurring pattern that I am sure is obvious to those of you who follow one or more of these pages on a regular basis. The better your child is doing, the less you seem to provide updates to their progress. While I will admit it may seem to be a somewhat selfish practice, it’s a common fact of the situation. It follows the premise that “no news is good news”.

Problem is, people who reference these pages for information about health updates feel if there is nothing new there, we must be in the hospital, but nothing could be further from the truth. In fact, our lowest and most crucial times were spent banging the keys of the computer at all hours of the night hoping that describing our trials and heartaches in print would somehow mitigate the pain. During those trying times, we looked forward to the opportunity to tell the world our problems day after day and even if nobody read them, it was a great outlet, and today it still is (uh oh, still sounding selfish). Well anyway, Emily is doing great, and we’re home from her Make-A-Wish.

The “Wish” began Saturday morning with the usual excitement/stress that comes with packing for a trip, but once the limo driver arrived, the stress began to dissipate quickly. Our wonderful Wish Granters, Sue and Steve Jockers, who facilitated the entire event and celebrated our departure, soon joined us. After the usual commotion of pictures and good-byes, we headed to the airport and we were off. Upon landing in Orlando, we were greeted by a volunteer from “Give Kids the World” who most graciously informed us that we would no longer have to think until we left. If only we had known how true that was.

We were given a rental car on our arrival, and also given instructions to the “Give Kids the World Village” that were so explicit that anyone could have found it. From there, our journey began, and it was a whirlwind. This village for children provided everything from food to shampoo, and if you never visited one theme park, there was so much to do in the village you could be happy never leaving the grounds. We were greeted, and the girls were given Mickey Mouse dolls and as they played with them, we were given a portion of our orientation, and led to our personal villa. This villa would be considered a mansion in New York City related to its square footage and to be honest, could easily be lived in, were it necessary, by an entire family. But that’s not enough, they had food delivery service, breakfast delivery, pizza delivery, and an endless supply of ice cream for the girls. This is all over and above the passes they gave to Emily for every major theme park in Orlando. Anywhere she wanted to go, depending on her whim that day, we had tickets for, and we went everywhere, all day long.

In addition to the wonderful theme park passes every day, we also attended events at the village, and we even had a real treat on Wednesday. They had a “Parents Night Out” where we were given a gift certificate to a local restaurant and provided a babysitter for a few hours. They sent us off with a cell phone and told us to have a good time, and although nervous, we went and had a great dinner and came home to some very excited girls who had a whole evening of games, crafts, entertainment, and ice cream. If they had any better a time, they may have opted to leave us, and stay with the volunteers.

The “Give Kids the World Village” is something we knew nothing about before the world of cancer, but they do ask that we spread the word, and we couldn’t be happier to do so, that’s why we added their web site to our page. If anyone anywhere in the world has a chronically ill child, they owe it to that child to visit this village and have a little bit of relief from the world they are in. They can take a little time out for fantasy and fun, and even if just for a week, it builds memories that will last a lifetime.

I could go on for pages about the day-to-day activities but that would be boring, and I don’t want to spoil the surprises for parents who will go on this trip in the future. Suffice to say it is like nothing you will ever experience, and if you have been to Disney a thousand times, you’ve never been like this.

Emily went to the doctor today, and her counts remain good, but this past Wednesday, her HAMA results were positive again, so we won’t be going to New York for a treatment anytime soon. However, we will be going to New York in January for Emily’s quarterly scans, and we will pray for the continued negative scan results that we have gotten in months past.

Emily is energetic, happy, and doing well in pre-school and we are confident she will catch up with her sister and be ready to start school next year. This is all possible because of the individual attention and care given by Rock Creek Academy who has been a supporter of Emily since day one of this nightmare.

So, since we’ll be home for Christmas, and New Year’s, we are off to take on the normal family hysteria that comes with these holidays, and hope that all is well with all that read this. For all those children who are not so fortunate as Emily at his time, we ask that you include them in your prayers, as we were at one time, in the same boat. While we are by no means “out of the woods” we are able to have a family at home, which a year ago was not the case. That being said, we know the strain of those spending their holidays in hospitals, and ask that you reach out to them however you see fit…. even if only in prayer.

Until later, Good Night and God Bless,

David and Diane

Friday, December 10, 2004 9:44 PM CST

Hello Friends and Family,

There is what seems to be a naturally recurring pattern that I am sure is obvious to those of you who follow one or more of these pages on a regular basis. The better your child is doing, the less you seem to provide updates to their progress. While I will admit it may seem to be a somewhat selfish practice, it’s a common fact of the situation. It follows the premise that “no news is good news”.

Problem is, people who reference these pages for information about health updates feel if there is nothing new there, we must be in the hospital, but nothing could be further from the truth. In fact, our lowest and most crucial times were spent banging the keys of the computer at all hours of the night hoping that describing our trials and heartaches in print would somehow mitigate the pain. During those trying times, we looked forward to the opportunity to tell the world our problems day after day and even if nobody read them, it was a great outlet, and today it still is (uh oh, still sounding selfish). Well anyway, Emily is doing great, and we’re home from her Make-A-Wish.

The “Wish” began Saturday morning with the usual excitement/stress that comes with packing for a trip, but once the limo driver arrived, the stress began to dissipate quickly. Our wonderful Wish Granters, Sue and Steve Jockers, who facilitated the entire event and celebrated our departure, soon joined us. After the usual commotion of pictures and good-byes, we headed to the airport and we were off. Upon landing in Orlando, we were greeted by a volunteer from “Give Kids the World” who most graciously informed us that we would no longer have to think until we left. If only we had known how true that was.

We were given a rental car on our arrival, and also given instructions to the “Give Kids the World Village” that were so explicit that anyone could have found it. From there, our journey began, and it was a whirlwind. This village for children provided everything from food to shampoo, and if you never visited one theme park, there was so much to do in the village you could be happy never leaving the grounds. We were greeted, and the girls were given Mickey Mouse dolls and as they played with them, we were given a portion of our orientation, and led to our personal villa. This villa would be considered a mansion in New York City related to its square footage and to be honest, could easily be lived in, were it necessary, by an entire family. But that’s not enough, they had food delivery service, breakfast delivery, pizza delivery, and an endless supply of ice cream for the girls. This is all over and above the passes they gave to Emily for every major theme park in Orlando. Anywhere she wanted to go, depending on her whim that day, we had tickets for, and we went everywhere, all day long.

In addition to the wonderful theme park passes every day, we also attended events at the village, and we even had a real treat on Wednesday. They had a “Parents Night Out” where we were given a gift certificate to a local restaurant and provided a babysitter for a few hours. They sent us off with a cell phone and told us to have a good time, and although nervous, we went and had a great dinner and came home to some very excited girls who had a whole evening of games, crafts, entertainment, and ice cream. If they had any better a time, they may have opted to leave us, and stay with the volunteers.

The “Give Kids the World Village” is something we knew nothing about before the world of cancer, but they do ask that we spread the word, and we couldn’t be happier to do so, that’s why we added their web site to our page. If anyone anywhere in the world has a chronically ill child, they owe it to that child to visit this village and have a little bit of relief from the world they are in. They can take a little time out for fantasy and fun, and even if just for a week, it builds memories that will last a lifetime.

I could go on for pages about the day-to-day activities but that would be boring, and I don’t want to spoil the surprises for parents who will go on this trip in the future. Suffice to say it is like nothing you will ever experience, and if you have been to Disney a thousand times, you’ve never been like this.

Emily went to the doctor today, and her counts remain good, but this past Wednesday, her HAMA results were positive again, so we won’t be going to New York for a treatment anytime soon. However, we will be going to New York in January for Emily’s quarterly scans, and we will pray for the continued negative scan results that we have gotten in months past.

Emily is energetic, happy, and doing well in pre-school and we are confident she will catch up with her sister and be ready to start school next year. This is all possible because of the individual attention and care given by Rock Creek Academy who has been a supporter of Emily since day one of this nightmare.

So, since we’ll be home for Christmas, and New Year’s, we are off to take on the normal family hysteria that comes with these holidays, and hope that all is well with all that read this. For all those children who are not so fortunate as Emily at his time, we ask that you include them in your prayers, as we were at one time, in the same boat. While we are by no means “out of the woods” but we are able to have a family at home, which a year ago was not the case. That being said, we know the strain of those spending their holidays in hospitals, and ask that you reach out to them however you see fit…. even if only in prayer.

Until later, Good Night and God Bless,

David and Diane

Wednesday, November 24, 2004 1:40 PM CST

Hello Everyone,

Due to the tireless efforts and generosity of the Make-A-Wish Foundation, we have finally found a moment in time that Emily can fully go back to being a child again, even if only for a week.

The wonderful volunteers came to our house last night and presented Emily with her granted wish of a trip to Disney World, and she was ecstatic. Aside from furnishing the trip itself, there are provisions made for Emily to be treated like a VIP during her entire visit. Everything from the limo that will pick her up to go to the airport, to the one-on-one breakfasts she will have with all the Disney characters are done to make her a queen for the week. After all Emily’s been through, it’s nice to know there’s an organization out there that wants to do so much to offset it with some good memories. We are truly grateful for Make-A-Wish, and are looking forward to our trip.

Emily has had a little less than two weeks in pre-school and is doing great. The teachers want to know where she gets the energy to run around all day the way she does. Having her sister there with her is a big help too, and the interaction between them and the other children is the social outlet we feel Emily desperately needs. She is quickly picking up on the education portion of school as well and in this short time we have seen an improvement in her numbers, letters, and her speech in general.

We will draw blood again in the first week of December to test for going back to New York. Our November test was positive, so we couldn’t go, but she is getting used to the needle stick for blood now that the “tubies” are gone, and we will keep trying until it’s time to return.

Until then, we will celebrate our Thanksgiving at home as we are thankful for so much and for starters are just glad we’re not doing it in a hospital room this year. We are fighting off some sort of pesky cold that seems to have been with one or all of us since our last trip to New York, so home alone will be good for us right now. As I said before we have so much to be thankful for this year and to list it all here would be difficult. Over the past year we have tried to recognize all of those who have touched us since Emily was diagnosed, and Thank them individually either in person, in writing, or on this web page.

Most of all, I am thankful for my wife and this family unit we have that has withstood a horrible crisis, and come out of it stronger, happier, more appreciative of life itself, and each other, than anyone can imagine. So to everyone reading this,

HAPPY THANKSGIVING, AND GOD BLESS,

David and Diane

Friday, November 12, 2004 8:43 AM CST

Hello All,

Today, Emily went back to school !!!

After all we’ve been through, she got to go back to her pre-school this morning and with her sister on one hand and her lunchbox in the other, she entered the door she’s not been through in 15 months. It looked like she was going to hesitate at first, but once she worked her way past all the adults in the doorway, she dove right into the day’s activities. She became so involved that at one point, while I was trying to take pictures, she looked up from her project and said, “Daddy, you have to go home now” and went back into her Elmer’s glue induced trance and ignored me. Diane and I have both been quite nervous about her returning to the “general population”, but she needs to get back on track with her education before starting kindergarten next fall. In addition, a child her age needs some social interaction as well as education. Up to now, that interaction has been limited to medical professionals and her immediate family on those days when she’s home. So we know inside, that it’s time.

As I write this, there is a very eerie and empty feeling without Emily being here. Although we are still getting past the concerns of her being out of our sight & control for the first time in almost a year and a half, it’s more than that. It is lonely here without her pestering me to change the channel, make her something to eat, watch her rendition of Barbie in the Nutcracker for the 100th time, or watching her demolish a spotless house in under five minutes. Although we had horrible health issues to deal with, she was here, we could monitor every breath she took, the color of her skin, the sound of her voice, and reassure ourselves she was okay. Now, we must trust in our doctors and the Lord above that we don’t have to “watch over” her healing 24 hours a day anymore, and let her get out and start living the life and childhood she’s been denied these long fifteen months.

Emily went to the doctor again yesterday to have an overall checkup and to draw blood for the next HAMA testing. This has always been an average day at the doctor’s office, but this day would be different. You see, she has always had her central venous line to draw blood from, so it was without incident and she would even help the nurses do it. But now, she has to get an IV in the arm, and wait for that little vein to pump out enough blood to fill 4 or 5 vials, not a good scene to a four-year-old. Emily did it though, and even through the crying, never moved that arm one-inch until the nurse was completely finished. She continues to be a warrior. If we are lucky, her blood will be negative, and we will plan our next trip to New York. This will be her third of a projected four treatments and knowing there’s just one more left to go would feel great to all concerned. If her blood doesn’t cooperate, we try again in December, which would put us in the hospital over Christmas. We have grown quite used to our holidays in the hospital, and considering what she would be there for, that’s all the gift we need this year.

Emily has been fitted for hearing aids and we have entered yet another facet of this disease and it’s treatment. One of the chemotherapy drugs used in her treatment causes a great deal of hearing loss. While we never really noticed before, it has gotten progressively worse over the past month to the point that if you are not looking directly at her, she won’t hear you talking in a normal to even loud voice.
We are hoping the hearing aids make a difference, and we’re glad she’s young enough that vanity won’t be an issue.

This weekend we are going to the circus and it will be the first time for the girls. Their exposure to animals has been pretty much limited to the ones they see on television. We did take them to the zoo once (before Emily was diagnosed) but the animals were all asleep and it was a hundred degrees outside so that was a bust. But we went to the Central Park Zoo a couple months ago and they loved it, so we are confident this will be a big event.

Once again, many Thanks to all that have continued to make this journey a little more bearable through your charitable efforts. Most recently we have had great support from the people at Delta Airlines and they have made it a point to throw as many free or discounted tickets our way as they can. What’s most rewarding, is that this was not a big corporate thing, but an old fashioned grassroots effort started by employees who wanted to help us out, so again, Thank you. Until next time,

Have a great weekend, and God Bless,

David and Diane

Monday, November 1, 2004 9:12 PM CST

Happy Post Halloween!!

We had a very busy weekend anticipating Halloween! We participated in the ALS Walk to D'Feet Lou Gehrig's Disease at Sawgrass Mills Mall, to support a member of our church John Lore, and also a fellow Jackson nurse Rita. As of the walk, they had raised over $45,000. The girls enjoyed their "pep stroll" through the mall in their stroller! From there, we were off to St. Paul's for the Harvest Festival, where MaryGrace and Emily enjoyed temp. tatoos, nail painting, sand art, bounce house, hay rides, and lots of prizes. They had a wonderful time.

Halloween evening was very exciting. Emily was a cowgirl, and involved her favorite horsie in her costume, and MaryGrace was a cheerleader. We visited a few of our neighbors, and came home to our driveway, where the girls gave out all the candy.

Emily is enjoying her life without her Broviac. It's hard to believe that last Halloween, Emily was inpatient, receiving chemo. Thank God, we have come so far.

Until later, Good night, and God Bless,
Love,
David and Diane

Thursday, October 21, 2004 9:40 PM CDT

Hello Friends and Family,

Emily’s central line came out today!!

We have reached another milestone in Emily’s treatment, and it is like so many other facets of this journey…a double edged sword (or I guess a two-headed coin if you go for that “glass half-full” theory). It has come time to have Emily’s central venous line removed, and it comes with a lot of positive and negative features.

The biggest positive side is probably the psychological view that it signifies the end of the need for it, hence the end of treatment. While we are still going to go to New York for her antibody treatments, all the doctors involved have agreed that we are at a point that it can come out. Then comes the negative aspect.

This line has been the source to “plug-in” Emily’s necessary medicines throughout the past 14 months, and once it is gone, she will have to get things like everyone else. The idea that she will have to get stuck in a vein every time blood cultures are needed or meds have to be given, is not a thought we cherish, but in the name of moving forward, we have to do it. It (the line) has grown to be a source of security for us because we know as bad as things can get, there is a direct line to do something about it. Now, any potential problems come along with the added stress of having to sit her down each time and explain that she has to get an “owweee” to fix it. This includes her treatments in New York where she will have to get an IV at the beginning of each cycle, and any additional blood samples needed over and above a finger stick will require another.

We are happy to announce that Emily had her surgery today, and her “tubie”, as we have referred to it, is GONE!! Dr. Long, who has been with us since the day of diagnosis, Sept. 2nd, 2003, did the procedure, and was as happy as we were, to report that Emily did great, and could now take a bath in the bathtub again, not our kitchen sink with her feet in the water! Emily is showing EVERYONE her area “where my tubie used to be”, she is happy, too.

Emily’s recent HAMA was Positive, meaning she still has the antigen against the antibodies that we receive in NY. She can return to NY when the HAMA is negative. She will have her next blood draw Nov. 12, so we will know then, if we return to NY for her next treatment. We are still praying to return to Sloan-Kettering for her next 3F8-antibody treatment.

Thank you all for your prayers and support. Our little girl sleeps in her bed tonight, minus the Broviac that she has had since the day she was diagnosed, it is a happy day for us!!

Good night and God Bless,
David and Diane

Wednesday, October 6, 2004 8:22 PM CDT

Hello Everybody,

First of all, sorry for the delay in updates and any worry it may have caused. People seem to assume if there is no update, bad news is around the corner, but nothing could be further from the truth. Our biggest problem is that while we are in New York, we don’t have Internet access at the Ronald McDonald house. We do have an ability to go on line in the hospital, but we are usually involved in something with Emily’s treatment that winds up being a lot more serious than the Internet. But we are all back and all okay.

The last week we were there, Emily had a series of scans and Bone Marrow tests, and as of yesterday, all results were negative. No evidence of Neuroblastoma, and the doctor said that was great news (not that we needed him to translate that part for us, but it felt great to hear it from him). She did however get a positive HAMA result, which is the antigen her body is building in this therapy. We eventually want her to get this, just not now. We felt it probably happened after the first week of this round of treatment, as during the second week she had no side effects.

Coming home was interesting too. While we were gone, Hurricane Jeanne blew a tree over on my car. Although Diane’s brother came while I was gone and sawed it off of the car, I had the remnants and debris of a twenty foot tree to contend with before we got cited by code enforcement for the litter and unsightly appearance.

Then, we had a flood several months ago (before the hurricane hysteria started) and after a handful of plumbers, contractors, and handymen took a shot at fixing it, we were confident it was okay, and were ready to have new carpet installed this Tuesday. Problem is, Saturday night we noticed a huge puddle of water in the den (right where the carpet was to go) and we were at our wit’s end as to what the source of the leak was now. After some intense head scratching, some cursing, and a good bit of wine we traced the origin to our air conditioner. It had been backed up and the water that should have gone out the drainpipe was leaking into the closet, traveling along the walls and flooding in the den. Of course our thought is, “don’t we have enough going on” but this is the game of life, so we fixed the leaking A/C and hoped for better days ahead.

And now, after a few days back home, the car is fine, the tree is chopped up, the flood is fixed, the new carpet is down and Emily is still disease free….not bad. Next, Emily has a doctor visit Thursday and we will begin to entertain a timetable for removing her central line. This will be the first step in returning to a “normal” life (at least as normal as it gets in this life) and once it’s out, we will start planning for her return to pre-school. She is behind in the education department after having been out of the loop for the past year. We are going to try and get her up to speed with some individual attention and the help of her twin sister and we are confident she will pick it up quickly and be ready to go before kindergarten.

So, we are hoping for a good doctor visit tomorrow and a chance for Emily to see all her old friends at Joe DiMaggio. While we are excited about this amazing new treatment we are getting in New York, there’s a lot of comfort in being home, for all of us.

Good Night and God Bless,

David and Diane

Monday, September 27, 2004 7:46 PM CDT

Dearest Friends and Family,

Week number two is behind us, but it was the absolute opposite of week one.

Part of the doctors being able to evidence that the antibody therapy is working involves witnessing the excruciating pain I described in our last update, and this past week, there was none. They may as well have been giving Emily water because it seemed to have no effect on her.

She got no “rescue doses” of pain medicine, so other than the pre-meds she gets before they start the infusion, she walked out straight as an arrow. This is an indicator (at least from a laymen’s point of view) that the antibody being infused is not doing what it needs to because she has already developed a HAMA again. However, as I said, this is only our view of things so we will reserve any good or bad feelings until we hear from the doctors. We went in today to have her blood drawn specifically to test for this HAMA, and then we will know for sure.

But enough of that, we had a GREAT weekend!

Mommy and MaryGrace came to the Big Apple, and we went non-stop all weekend. Saturday we went to the Central Park Zoo, and walked central park itself (not all of it of course), went back to the Ronald McDonald House where they have a wonderful playroom that kept the girls busy for hours. After that, we had dinner at a nice Mexican Café and while we sat on the street and people watched the girls devoured tortilla chips. After a cool brisk walk home, we all retired for an evening of peaceful slumber.

Sunday, we opted to do the single most touristy (probably not a real word) thing you can do in New York, and took the double-decker bus tour of the city and it was great fun as well as informative. Monday, we ventured into Macys in search of bargains on winter clothes, and had great luck. We then visited a friend of Diane’s who is a clothing designer who offered us tons of her company’s children’s samples. As luck would have it, children’s sample sizes are exactly that of the girls’ and we were most grateful.

Then all the festivities came to an end. Diane and MaryGrace had to go home, and it was an exceptionally empty feeling as we packed up things for them to go back. As we saw them off in the cab on York Avenue, I took Emily for a little walk, and every cab she saw she asked” Is that Mommy? Is she coming back?” Needless to say, it was heartbreaking, and for the first time since she has started treatment over a year ago, she asked me if she could go home.

Of course we can’t leave yet as we are staying in New York for her first round of quarterly scans, so all this week, I will have to keep her mind diverted with games, toys and activities. If only she liked to eat…we could tear this town up. There’s no shortage of restaurants here and every meal is better than the last.

Well I’m off to take Emily for her last walk before bedtime, and it will be an upsetting event I’m sure. She scans the stars at night and when she sees one moving (an airplane) she asks if that’s Mommy coming to get her. Emily has been so good through all this and she’s been easy to placate with happy stories and the like. But now that she’s older, she’s becoming aware of her feelings and missing her Mommy and sister. As a result, I am forced to address those feelings even though I have my own set to contend with. Here we enter yet another phase of parenting a chronically ill child. Rest assured, it’s no picnic for Diane either, to have to leave that same ill child waving to her from a New York street corner as she leaves in a cab, but we will face it like every other challenge of this journey, and do it TOGETHER.

Until later,

Good Night and God Bless,

David & Diane

Sunday, September 19, 2004 5:49 PM CDT

Hello Everyone,

We have completed our first week of treatment, and as the doctors told us, no two days are the same.

Emily’s pain seems to set in a little later in the treatment than it did on round one, but is by no means any less severe. Once again, her side effects from the narcotics are very difficult to contend with, but I guess that comes under the heading “ lesser of two evils”. She gets very belligerent and stubborn, and we as parents have to walk that tightrope between being understanding and looking out for her health and safety. When her treatments are done each day, something as seemingly harmless as going to the playroom poses a myriad of potential dangers. She is so loopy from the narcotics that she has no balance and a very altered sense of reality. Normal childhood things like running around could cause her great injury, but in that aforementioned “ altered sense of reality” there’s no telling this little four-year-old NO. Herein lies the struggle. The nurses help a great deal in keeping her in check “during” the treatment, but afterward, we’re pretty much on our own, and the best we can hope for is the allure of drawn curtains and a comfortable bed back at the room will make her listen to reason. On the days it doesn’t work, she is followed with a human shadow ready to step in the minute she looks shaky, or is about to get into some trouble.

It was very sad when Diane and MaryGrace left. It felt very lonely for me to stay here and very helpless for Diane to leave. I also observed that MaryGrace has an uncanny ability to “ know when she has to be good”. This is not to say she’s an angel all the time, but when we had stressful situations during Emily’s procedures, she occupied herself wonderfully. We didn’t let her stay in the room once the pain was about to start, and while we tried to alternate our time with Emily, there were times we just both wanted to be in the room with her. During those times, MaryGrace played in the playroom with the volunteers, sometimes she played by herself she did crafts or at times, just read. She never acted up, and this made the hospital visits a little easier on us. It’s like they just seem to know when to behave, and she did every time.

Diane and MaryGrace have started to settle back into the routine at home and Emily and I are making the trek back & forth to the hospital with some entertaining stops in between if possible. This weekend we canvassed Times Square again and Toys-R-Us was the major stop for Emily. As a result of the generosity of the Catie Hoch Foundation we were able to splurge a little more than we would have and she had a ball. Sunday, we walked the streets in the brisk 50 degree weather (where did that come from?) and later went to a little pottery painting place where she made a picture frame for Mommy. I try to keep her busy because I know what her week ahead will be like, and she deserves every bit of diversion I can provide during her free time.

After her treatments this week, we will have to stay an additional week for her quarterly scans, and the doctor has even made mention of removing her central venous line afterward as she really doesn’t need it anymore if she’s still cancer free after these scans. In fact, having the line now has more risks than benefits because of the potential for infections. So, we will discuss the issue further, and probably have it removed back home by our beloved Dr. Long.

As of the posting of this update, Grandma is in the hospital being very short of breath, and as a precaution Diane took her in for the once over to find out what the problem is. She has been as much a part of Emily’s treatments as we have since this all started and has continued to pick up the slack for us while traveling and at home. So, if you can all throw just a little bit of that prayer medicine that has so helped Emily this past year in Grandma’s direction, I’m sure she’ll bounce back just fine.

Tomorrow we will start the last five days of treatment for this cycle, and trust that Emily will bulldoze through the pain as she did the last five days. She continues to be such a fighter and every time we have a major battle of the wills in the hospital (her narcotic induced psychosis), I just have to back up and laugh to myself. You see, it is that strong, stubborn will that has carried her this far, and in such good spirits and it shows every day. The people on the floor can’t help but laugh when they see her coming now because they know there is bound to be a show to follow. She now has to check in at the reception desk herself and get her ID bracelet. Then, go to the IV room to get her finger stick while expressly telling Daddy “NO, this is just for girls”, and then fight me for a half hour about going to the playroom versus her treatment bed. She has touched so many people from doctors, to nurses, to even the maintenance staff and food service personnel, and continues to make everyone smile, including her parents. It is truly a blessing to have a child who has been through so much, and after it all, is still so happy.

Many thanks to all of you for your kind words, thoughts and prayers both on this web page and off.

Until later, Good Night and God Bless,

David & Diane

Friday, September 10, 2004 9:06 PM CDT

Hello All,

Today is our last day in the comfort of our own home, before flying back to New York for Emily’s next treatment.

There is a good bit of anxiety in the air, but I suppose we are too busy to allow it to set in yet. To start with, we have to pack for three weeks and have no way of knowing what weather we are going to encounter when we arrive. Even with a forecast from the Internet, nobody can say what things will be like three weeks from now, so I am sure we’ll pack too much.

Then we have to secure our home for the impending Hurricane Ivan and it’s 150 mph plus winds. It’s a bit disconcerting to know we are leaving our house behind with such a storm arriving the day after we leave. So, we have to look at the good side and realize we will be much safer in New York than we would be here, and material possessions can be replaced. Also, we have to make provisions to keep Grandma safe as well. Her home took quite a hit from Hurricane Frances, and they still don’t have power as of today. So, we have settled on a plan that she will stay here until such time as the storm approaches and she will go to Diane’s Brother’s (Gordon) house until they issue the “ all clear “ after the storm.


Next, we have to contend with whatever stigmas are attached to air travel on 9/11. Although every rational thinking person knows there is basically no way terrorists would ever be able to pull of the same thing they did three years ago, it still sits in the back of your mind and just feels creepy. I suppose some would say the biggest act of defiance to the gutless, heartless, sub-humans that glorify themselves with titles like “terrorist” or “martyr” is to intentionally fly on that day and every other day and continue to live our lives in freedom as we always have. It will be nice to be able to pay our respects Saturday night in the city that suffered the greatest loss of people and property, and hope everyone in this country will do the same on that day.

Emily had her weekly doctor visit yesterday and did great. Once again, no need for blood product transfusions, and the doctors gave us their blessings for a safe trip to New York for her next treatment. She continues to gain height and weight, and that is a great relief. A lot of children with similar diagnoses have experienced slow growth rates, and we were a bit worried about that. In fact, her being a twin almost makes it worse because we have an immediate point of reference for her stature and it becomes much easier to become concerned.

So, it’s off to prepare for our hiatus in New York, and we ask that everyone remember those lost on 9/11, and those of you in Florida, stay safe this weekend!

All our thanks for your continued thoughts, prayers, and contributions, and until later,

Good Night and God Bless,

David and Diane

Thursday, September 2, 2004 8:49 PM CDT

Hello Everyone,

Happy Anniversary?

Well, this week was the anniversary of that fateful trip to the ER that unleashed this monster on us called CANCER. It’s hard to believe that it has been a year, but we went from a Stage 4 cancer diagnosis out of the blue on August 31, 2003, to no evidence of disease on this same date a year later. So we will take our blessings and be thankful for all those that made it possible.

We are equally thankful to all of those who made this long road a lot more bearable along the way over and above the direct responsibility of caring for Emily. For example, the countless cards, letters, phone calls, e-mails, gifts, and meals from friends will be something we will never forget. Moreover, we appreciate the spiritual input in the prayers from people who are friends, or even strangers to us but prayed anyway, and the clergy (Pastor Tim Hartner especially) who continued to provide strength during times when our souls were weak. These are people who gave without expecting, and most often got no reward, but continued to do the same, day in and day out and whether they ever knew it gave us the strength to go forward.

Coincidentally, it was also our wedding anniversary and we did our best to appreciate each other but it is safe to say we are not used to “dating” after a year of this. We are not normally able to go out and not be thinking about the responsibilities at home, but this is the closest to a “normal life” we have experienced in the past year. So, we got a chance to share in each other for an evening and it was quite the adventure. We started at La Brochette where we have never had to have a reservation in the past, and were denied entry without one. Then, we went to Armadillo Café (a regular since our dating years) and they were mysteriously out of business after 16 years, so we pushed on to Carrabba’s who had such a long wait that we left. We wound up at a sushi restaurant that we ate at all during our courtship, and as it happens, we loved it…and each other.

Emily’s blood (HAMA for insiders) tested negative and so we are back on track for her treatment next week, and we are making plans for New York. Once the impending hurricane threat has passed (wishful thinking) we hope to put things together and be ready to go as soon as they say it’s okay to travel.

Emily is playing and having a good time, and as of now, the only anxiety in this house comes from the two of us, not being able to deal with the idea that things might actually be getting better. She had her blood drawn today and her counts are great, but we still remain so cautious regarding her health. Maybe it’s time to start accepting a little good news when we get it.

Thanks to all of you, and we would like to express a special Thank You to the King Family. They have continued to provide meals and friendship ever since Emily got sick and even up to now continue to keep us fat & happy, and we thank them.

Until later, Good Night and God Bless,

David and Diane

Friday, August 20, 2004 2:52 PM CDT

Hello All,

Once again our days are peppered with good, and not so good, news.

The not so good news is that we just found out that Emily’s body has already built the antibody that was expected after four treatments. Problem is, she’s only had one, and now future treatments are delayed until this changes. Being a proud parent, it would be nice to think that she just has a SuperBody and “overachieved” in building up antibodies, but the doctor assured us that is not the case. So we must now continue to check her blood every other week until the antibody is no longer present, then we can resume treatments in New York. So all we can do is wait.

The good news is our regular doctor visits (locally) have been cut back to once a week, and we really don’t know what to do with all this extra time (well, that might be an exaggeration). Problem is, it’s a strange feeling to not be constantly at the doctor. There’s a certain “security” in being under their professional care, and when they start to cut you loose you don’t want the freedom. You want the obligation of knowing you have to be there the next day because you know they are going to solve whatever problems she has, even if it’s not cancer related. I mean, she could have a skin rash, and we are looking to them to answer everything because we figure, “hey, they saved her life” so they must know. I can’t explain it, but I have heard other parents in this situation say the same thing.

So, with no doctor’s appointments, we went to the playground today. Although it may sound corny, I would ask you indulge me in these thoughts. It’s nice to see her run and smell fresh cut grass, knowing that before, the farthest she could run was the length of her IV tubing and the smell was of alcohol, not the outdoors. Or to see her get red in her cheeks from all the activity, and know she doesn’t need a blood transfusion today. To feel the wind in her face and know its Mother Nature and not the breeze of the positive pressure blower disinfecting her hospital room, was truly priceless.

Hopefully these are things Emily will get to begin to associate with now, and I only hope others don’t have to go through this just to get the appreciation I got today seeing a little four-year-old “just be a kid”.

As always, Thanks for all your thoughts and prayers, and until later,

Good Night and God Bless,

David & Diane

Tuesday, August 10, 2004 1:56 PM CDT

Hello Everyone,

Well, it’s one-week home now, and in some ways it’s very different, and in others, still the same.

It’s different in that we are not reckoning with fevers and infections and waiting for the next midnight run to the ER. But, it’s very much the same in the number of doctor visits we are having. Emily’s body & bone marrow is still not fully recovered, and she still needs transfusions (mostly platelets) fairly often. So, since the only way to know if she is in need of blood products is to go to the doctor’s for the lab work, it’s a good 3 days a week at the doctor and at least once a week in the hospital.

The big difference is the time that we’re NOT at the doctor’s. I’m able to take her on errands, to the park, or just play at home, and these are welcome changes. Her counts are good enough that we don’t have to keep her completely isolated, but we do still have to exercise precautions and keep her safe. For example, we won’t be going to Chuck E. Cheese for lunch or a kids play arcade because the odds are against us staying “germ-free” in those environments. But we can at least take part in day-to-day life activities, and it’s nice that she sees something other than the inside of a medical building each day.

Today for example, we took our first bike-ride lesson. It was hardly the Hallmark card moment you might envision in a holiday TV commercial, in fact it was frustrating to be quite honest. I’m sure any parent that has done it knows what I mean. But, right when she got close to getting the hang of things (all be it with training wheels) she took a sharp turn and fell and a funny feeling came over me. Although all the same panic sets in to see if she injured her central line, or her G-tube, and you have flashes of emergency trips to the hospital, this time was different. There was something “normal” about seeing some blood and it not being part of a medical procedure in a hospital. It may seem strange, but it was nice for her to finally have a health problem you could address at home with Bactine and a Band-Aid, and not have to race to the ER for an IV antibiotic. I’m sure some people might say “ Is he insane, his daughter has cancer and he’s happy about an injury?” But those who have lived through this with us hopefully know what I mean.

Mommy is back in to the work groove and MaryGrace deals very well with going off to school even though her sister has to stay home. They hug & kiss goodbye every morning, and are happy to be together in the afternoon. It’s surprising to see such mature, rational behavior in children so young

We go back to the doctor tomorrow and probably get a fix of platelets afterward, and Thursday is a very big day. We have our blood draw that gets FedEx’d to NY to see if her body has developed the antibody we’re looking for. The doctor’s have said that the ideal time for this antibody to show up is after 4 treatments, but it can happen after the first, or take years to develop, so who knows. So, until later,

Good Night and God Bless,

David & Diane

Sunday, August 8, 2004 9:13 PM CDT

Hi friends and family,

Sorry....we have nothing to report!!!! Isn't that wonderful!!!

Emily and MaryGrace have had a wonderful week, and nothing but a dr.'s appt. for blood work, and a platelet tranfusion and a blood tranfusion. We have to visit our dr.'s here at least twice a week, to make sure all is OK.

Next Thursday, we will draw the blood, (to be sent back to Sloan-Kettering) to see that Emily has not developed the antigen against the antibody treatment that she received 2 weeks ago. Hopefully, her blood will not show the antigen, and she and David will return to NY in 2 more weeks for another treatment of Monoclonal Antibody Treatment.(I know this is confusing!!) If she has developed the antigen, we will wait, and hopefully, it will go away, and she can get the antibody treatment at a later date.

We spent some time yesterday at our local Cooper City playground. Emily and MaryGrace ran around for more than an hour, going from swings to slides to rock climbing. It was energizing for all of us! Today was a bit rainy, so no playground, much to the cries of our little ones....maybe tomorrow.

So for now...
Good night and God Bless,
David and Diane

Monday, August 2, 2004 8:57 PM CDT

Hello All,

We’re home from New York, and everyone involved is happy.

Emily’s second week was pretty comparable to the first week, and the narcotics determined her mood each day. With a lot of drugs she slept all day after treatment, and with a little less, she napped, and needed to see the city ASAP.

She completed the 2 week program (first phase) and although there was a significant amount of pain, it was managed quickly and effectively, and our biggest concern after that was keeping Emily happy and helping her deal with a mood (or altered state) that a four year old is not prepared to deal with. It makes you really stand back from yourself and take someone else’s needs first, a lesson we could probably all learn.

We continued to see the sights of New York, and although Emily loved the city, she knew what was coming when she got on that plane Saturday.

Emily and MaryGrace have played and giggled since we arrived, and to see them together is blissful. They play and squeal like every little 4 year old, only difference being, they have been together since birth, so the reuniting has been overly exuberant.

We are hopefully going to have 3 weeks of freedom and Emily will be able to be a kid for a while, aside from some occasional doctor visits. So when we go forward from here, it’s all good news.

We thank everyone who has helped out along the way, and of course all the thoughts and prayers that have helped us to reach this point. Emily is happy to be home, and we are happy to be here too.

Until later, Good Night and God Bless,

David and Diane

Monday, July 26, 2004 7:27 PM CDT

Hi friends,

Well, it was an interesting weekend in NYC for Emily and Daddy....no hospital, no doctors, no antibody treatment!!! Yeah! The child life dept. at Sloan-Kettering hooked us up with free tickets to the Children's Museum and Museum of History, so it looked good for activity.

Friday night, was Christmas in July for the Ronald McDonald house, complete with Santa and gifts for all the kids. There were also face painting and balloon animals, which Emily loved. She finally had the chance to be a kid, running and playing, and truly enjoyed herself. The administration of the Ronald McDonald house approached David midway through the party, and asked if they could speak to him and Emily privately. (OH NO, had they found that beer bottle in the trash, or had "mean lady" on the 6th floor reported him that he was keeping the clothes dryer running too long??) David was curiously nervous. Come to find out, there was a special family, that brings one handmade doll to Christmas in July every year, and looks for a deserving little girl to get that gift. The family had chosen Emily. When Emily saw the doll, she was speechless. The doll was in a beautiful wooden box, porcelin face and hands, with a trunk of handmade clothes. Obviously, many hours of labor had gone into this beautiful doll. It was lovely.

Emily enjoyed the remainder of the party, but still had an entire weekend to prepare for.

Saturday, we woke to raining weather, not good for strolling around NY and seeing the sites. The Children's museum seemed like a good choice, but seemingly, the choice was the choice of every parent in the city. The museum was packed, and not really good for a 4 year old in a mask. By the afternoon, the weather was clear, so the 20 or more block walk was fine, around Central Park. Emily loves the stroller ride, and is really getting to be a good people watcher. In the evening we made a trip downtown to the famous Toys-R-Us. This is a site that everyone should not miss. There is a full size ferris wheel inside with each car representing a cartoon character, from Scooby Doo, to Jimmy Neutron. There is also a candy store, a huge t-rex, that was funny to Emily, until it came to life and growled, not to mention toys for every age.

Sunday seemed like a good day to attend mass at St. Patrick's Cathedral. It was quite memorable, but it is a shame people treat the cathedral more like a tourist attraction than a church. After church, we headed toward the piers, and took a 75 minute ride around New York Harbor, seeing the Statue of Liberty, and the beauty of the NY skyline. It is an unbelievable place. The weather was a cold 65 degrees (Is this July???)Emily really enjoyed the boat ride and the wind in her face.

We received a special gift from the hospital social worker at the clinic on Friday. An envelope with a letter from the Catie Hoch Foundation, and $75.00 cash. Catie Hoch was a child with neuroblastoma that received care and treatment at Sloan-Kettering. She passed away after a courageous battle, but her foundation gives cash to kids, and encourages the kids to visit the places that Catie loved, Toys-R-Us, BeniHana, Bronx Zoo, Little Shop of Plaster, and the Children's Museum. There is so much generosity and good will. We are so thankful.

Today, Monday, we are back to the hospital for treatment. We were thinking it might be a difficult day, as Emily hasn't had the treatment or the drugs since Friday. We were surprised. Emily had about 5 minutes of discomfort, but not really even crying, just a little whimpering. (This is good judging from the other kids getting the treatment at the same time) This week there are 7 kids in treatment. She had about a 2 hour on and off nap, and then back to the room. She was up for quite a bit, then decided she was still tired, and down for another nap. As of now, she is still sleeping, so I guess, it's what her body needs.

A sad note, a friend, Tim Gunther, passed away this am. We ask prayers for his wife Lucille, and their daughters.

Until tomorrow,
Good night and God Bless,
David and Diane

Wednesday, July 21, 2004 8:44 PM CDT

Hi Friends and Family,

First, we would like to apoligize for no journal updates since we left for NY last Sunday. We had every good intention, but you know what they say about that. The truth is that there was no phone line in our Ronald McDonald room, and the only place for access, was the hospital, and that was impossible, so I am writing now, as I have returned home tonight, and left Emily and David in NY. I will break down the last 4 days.

Sunday, July 18th
We arrived at Laguardia Airport at 7:30, about 2 hours late, thanks to bad weather in Ft. Lauderdale and NY. We were a little less than thrilled to re-experience the cab ride, coupled with wet roads, but we arrived at the Ronald McDonald House of NYC in good shape. The place is amazing, housing 84 families of cancer children. The 9 story building has a huge dining room, about 12 kitchens, equipped with all the supplies, a greenhouse, and 2 open terraces. Our room on the 6th floor has 2 twin beds and a rollaway. David called us "the Cleavers", with those twin beds. We got a tour of the place, and had to get Emily ready for bed, as our appt, in the am was at 7:30.

Monday July 19th
We arrived at Memorial Sloan-Kettering bright and early. Emily had her blood drawn, and then to her outpatient room. As the nurses prepared her monoclonal antibody treatment, several members of the neuroblastoma team checked in, to make sure everything was going as planned. There was such a feeling of organization and caring. We also found out this week that 7 other neuroblastoma children were receiving the antibody treatment. Her infusion started, and she felt the first discomfort about 20 minutes in. (the discomfort is a normal and expected side effect, quickly corrected with pain medicine) She received a total of 3 doses of pain medicine, and then fell asleep. The worst part of our day was over, and she had completed her 1st day ! Hooray! She did need a blood transfusion, though, so we didn't get to go home until after 6pm. Around 11pm, she spiked a fever of 101.3, so we were off to the ER at Sloan. We got a dose of IV antibiotics and were discharged at 3:30am, and not really looking forward to getting up at 6:30am!

Tuesday July 20th
Our 2nd day of antibodies went a little smoother. We anticipated the time of discomfort, and gave her 3 doses before she really needed it. It worked pretty well, as she had discomfort for only a few minutes. The lack of sleep from the night before, mixed with Dilaudid, Benedryl, and Vistaril did not help her mood, though. Meredith (Emily's alter ego, for you that remember!) is back, and boy, was she mad yesterday. Let me give you an example....Give me a blanket, don't cover me up, I want water, I want juice, rub my head, don't touch me, change the channel, don't touch the tv. Our job is to just go with the flow, and try to keep her happy. The mood does eventually go away, and we have our sweet Emily back. We went to the Ronald McDonald playroom, where Emily played arcade games, rode on an actual carousel horse rocker, and amused herself with some of the other kids staying there.

Wednesday July 21st
Our antibody treatment went pretty well, a short episode of pain, quickly relieved. Emily took a fast nap, and we were back in our room by 10:30am, which was great, as I was flying out at 3:30. We had a little time for "family time", and David and Emily walked me to the street to hail a cab. Boy, it was hard to leave them, and I had visions of leaving them both, back in Gainesville. David is such a devoted father, and so competent in all her care, that makes it easier.

I arrived home to a voice yelling "mommy", and immediately saw MaryGrace running to me. Mom, Aunt Kathy, and MaryGrace were a welcome site at the airport.

Again, sorry for the delays, and hopefully, we can keep the updates current. Emily continues to need prayers to get her through this treatment. Thank you all for that.

Good Night and God Bless,
David and Diane

Saturday, July 17, 2004 11:27 AM CDT

Hello Everyone,

It was a Happy Birthday, and we got the best gift of all days later!

Thursday evening we got the “okay” from our insurance provider to begin Emily’s monoclonal antibody therapy in New York at Memorial Sloan Kettering. It’s as if a huge weight has been lifted off our backs, because the financial burden of the treatment was far beyond anything we could have handled on our own. This was achieved with a lot of work, and a lot of help from others who made it their business to see to it that Emily got this treatment. Some of our biggest allies were Linda (the nurse practitioner) at our doctor’s office, Sharon and Judy from AvMed, and all of the related people who furnished documentation to demonstrate the medical necessity of this procedure. We are truly thankful for all this help from these people, but we remain in the faith that this is the second miracle handed to us from God. The first being her complete remission, and now this acceptance into a therapy that is almost certain to at least double her chances is truly miraculous.

Sunday, we had a small family party for Emily and MaryGrace’s birthday, and they were delighted. The big hit was a scale model kitchen that Grandma bought, and once daddy got it put together (hours later), it has provided fun ever since. In addition, they got tons of things from the different health care providers that have watched over and cared for Emily over the past year. Over and above all the usual little girls’ gifts, they also got a fish aquarium for their room that won’t be installed until we come back from New York.

We now are making arrangements to make our trip to New York, and begin this miraculous therapy. Although it is not without it’s own side effects, it’s appearing to be much more palatable than the treatment we were denied here locally. As opposed to days on end under close watch in intensive care, this therapy is actually outpatient and we go home every morning when the treatment is done. As it happens, home will be the Ronald McDonald house in New York City, and as of just hours ago, they said we now have a room.

So the plane tickets are in place, our lodging is now secured, the insurance is covering the treatment and we are ready to go. Now we must pack, and that will be the tricky part. We need to anticipate any possible situation that may arise medically for Emily so that we have the appropriate medicines on hand. Clothes are the easy part; it’s all her medical supplies that are going to be a challenge.

So, we are off to make our final arrangements, and get packed up. As always, thank you all for your kind words, thoughts, and prayers. Those gestures are what have gotten us to this point and we are truly grateful.

Until later, take care and God Bless,

David and Diane

Friday, July 9, 2004 5:29 PM CDT

Hello All,

New York was great, but it’s great to be home.

Things were a little more hectic than we anticipated, and as a result, the updates weren’t rolling off the presses as fast as they were in Gainesville.

Overall, we have to say the visit was a big success, at least medically it was. We had a lot go on, so we’ll break it down by the day, to give you the full flavor.

Day 1, Monday: We flew out for a 3-day visit that took about 6 bags to cover. Of course we had to not only pack for clothes, but also Emily’s medicine. In packing Emily’s medicine, you have to calculate the number of doses you will need, the number David will spill preparing them, the number damaged/lost in travel, and some extra in case we messed up. So in short, we packed every drug and medical dosing device we have gotten since we started treatment. *And in case taking these drugs over state lines is against the law, I am making this all up.

We flew in on Jet Blue airline, and the wonderful people there moved our seats around so that Diane and Emily were in the front row, and MaryGrace and I were only 2 rows behind them. We arrived and checked in to the Helmsley Medical Tower which they billed as an efficiency / Jr. suite. Fact is, it was a huge studio apartment with a full size kitchen (all be it small) and full size bath in Manhattan's Upper East side. It was beautiful, and so close to the hospital I could throw a rock and hit it. And I did, until the NYPD came and said to stop. We figured today would be a day to try and see a few sights since we had no idea what the days ahead would hold for us. So, we went to Times Square to look around and maybe find some phony Prada bags, and Rolex watches, again if this is illegal, see footnote above. As it happens, they have sanitized the streets so much that even the phonies were phonies, and the brand names were even misspelled in some cases. So between that letdown and the overall fact that we are trying to keep Emily all bundled up and germ-free but have her in the largest concentration of people in the country, we opted to go to the hotel, and rest.

Day 2, Tuesday: We had an appointment Dr. Brian Kushner of the Neuroblastoma team to discuss Emily’s eligibility for this new therapy, and prior to that had to meet with the business office, so we went in early. This was pretty easy because in New York, everything you need in a city is inside your building. All you have to do is go down the elevator for breakfast, groceries, dry cleaning, dog grooming, home remodeling; anything you want is right there. So out we went, and arrived at Memorial Sloan-Kettering only to be amazed. The facility is huge, and even something as incidental as the children’s playroom was like going to the Smithsonian. After a good bit of waiting, we finally got to meet the good doctor. To save you all the medical jargon, Emily seems to meet ALL of the criteria to start this therapy and he told us she would have to undergo a few tests, and scans to complete his evaluation. It was his best estimation that she would have no problem though.

Dr. Kushner spent several hours with us, which was as impressive as the facility itself. He also alleviated a lot of our anxiety when he laid out the treatment plan, and said there would be NO time in intensive care which was quite different than what we were facing here in South Florida. In fact, this therapy would be outpatient, and every 3 weeks, we go to New York and get a 2-week treatment, then go home and take another 3 weeks off.

At the end of this day, we decided to go down to the World Trade Center site, and see the new cornerstone of the Freedom Tower, and pay our respects to those lost on 9/11/01. Problem is, it is under construction and totally fenced off from every direction, so the most we could do was see a small piece of poster board with all of the victims’ names on it. This was hardly a fitting tribute to the people lost that day, and it’s no wonder the families of these people are upset that there is no better memorial to them there. Let’s hope this new tower will include a more befitting remembrance to them. After all, it is a gravesite, and deserves all the same respect as a grave.

Day 3, Wednesday: Emily could have nothing to eat or drink because she had tests to undergo, and would need anesthesia for them. We went in, and again, had a great deal of waiting to endure. We assume this is because of the shortened workweek from Independence Day being observed on Monday, and thus everything was either pushed back or doubled up. In either event, we had to wait. She went through both tests back to back under anesthesia, and recovered quickly. As a reward, Diane wanted to take the girls to FAO Schwartz and let Emily just be a “kid” for a day. After a hair raising cab ride down there (as ALL cab rides were there) we found a sign on the door saying that they were closed for the summer. Can you imagine, the worlds most famous toy store being closed over the summer when kids are out of school ?!?

Day 4, Thursday: We spoke with the staff at Memorial Sloan-Kettering before we left just to make sure they didn’t need any other tests. They said we were okay for now, and to have a good trip…and that we did. Jet Blue once again changed our seats to accommodate Emily’s condition and put her in the front row to minimize her exposure to potential germ carriers. Both girls slept almost the entire flight, and awoke to the stifling, sweltering heat of South Florida. We made a beeline home, and spent 8 hours trying to cool the house back down. Oh how nice to sleep in our own bed.

Day 5, Friday: Not wanting to tempt fate, we made an impromptu appointment with our doctors here to make sure Emily didn’t need anything before the weekend, and so we rushed in to get her blood work done. As it happens, she was fine and we were sent home. So hopefully once Diane gets home, we will begin the girls’ birthday weekend with good peace of mind. So until Monday,

Take care, and God Bless,

David and Diane

Saturday, July 3, 2004 6:31 AM CDT

Hello Friends and Family,

Well it’s off to New York!

Once again our week closes peppered with good news and bad news, so let’s start out with the good news.

Emily is out of the hospital, and running around the house like the energizer bunny. She and MaryGrace are so happy to be together again, and we’re happy to be sleeping in our own beds (all of us).

Last Friday was Emily’s surgery and it went great. She now has a new central IV line in her chest and that means no more in the hands and wrists and no more getting stuck every time the doctors need a new blood test. Her infections all appear to be gone, so no more antibiotics. Emily has begun eating and her nausea has all but completely subsided, for all of this we are happy. Now comes the bad news.

Last Friday (6/25/04) we were told that Emily was not randomized for the arm of the study that would provide her with new drugs and treatment to thwart the return of her cancer. This treatment has shown great promise in numerous studies, and after months of accepting the fact we would be going through another 6 months of treatment, it has all been yanked away by the stroke of a computer key.

As it happens, the only facility in the country that can provide this treatment is Memorial Sloan Kettering in New York. We would have been able to get it here, had the doctor’s computer randomized her in the other direction, but it did not, so it’s off we go. We will be flying up Monday to meet with the head doctor of the Neuroblastoma department (imagine, an entire department just for her cancer), and Wednesday she will be having several tests done so that they may evaluate her for this treatment program. Provided that’s all they need, we will return Thursday and wait.

Although by most standards this is inconvenient, we are just appreciative that Sloan-Kettering has agreed to see us so soon, and is working so diligently reviewing the results of her scans done here at Joe DiMaggio’s. What’s more, what is “inconvenient” when it comes to saving the life of your child? We have all said (myself included) from time to time, “ I would do anything when it comes to my child”, and never thinking we would have to act on it. But now it’s more than an expression, and we are not wasting any time. If there’s something out there that will improve Emily’s chances of staying cancer-free we’re going to get it!

Our biggest challenges ahead our going to be financial ones. If our insurance company continues to feel this treatment to be “experimental” or “not medically necessary”, as they already have, we may have to carry the entire burden of payment ourselves. We have no idea what this treatment would cost, but it involves numerous admissions to the intensive care unit, and very specialized care, which is not cheap. We are so busy making arrangements to get to the next phase of treatment, that we don’t have time to dissect our policy and go to war with the insurance company. Not to mention continued doctor visits here to keep her on track while we’re waiting to go.

So for now, we go to New York, get Emily evaluated, and we’ll worry about the money-related issues when we get back. We will try to update Emily’s page daily while we are out of town, like we did when we were in Gainesville so you can all know her progress.

Happy Fourth of July and until later,

Take care and God Bless you all,

David & Diane

Monday, June 21, 2004 6:32 AM CDT

Hello All,

Well, it was a Happy Father’s Day (at least as happy as it can be under these circumstances).

Daddy got to wake up in his own bed, and went to church with MaryGrace and Grandma, after all, we have a lot of thanking to do. At the end of the service, the Pastor made mention of Emily’s great news and thanked all of the members for their prayers.

Then, he embarrassed me and asked MaryGrace and I to stand up, and sent his well wishes for us to deliver to Emily at the hospital. But when that was done, MaryGrace took it upon herself to march right up to the front of the church, and get that same message up close and personal from Pastor Tim, and it was a riot. This timid little 3 year old (almost 4) who won’t even say Hi to people because she is so shy, decided she needed this message one on one, and got it, in front of God and everyone (literally)!

After church, Grandma went to the hospital to relieve Mommy, and we spent a Father’s Day afternoon together, and went out to lunch/dinner, and had a wonderful time. Then, it was time to get back to reality and head to the hospital myself before Grandma passed out from exhaustion. She got a little taste of what it’s like to keep up with Emily for a few hours, and it’s no easy task. With IV’s in both arms, and boards taped to them so she won’t bend the tubing, she can still get into more trouble than any kid with both hands free can. It’s not that she’s actually “bad”, it’s more our neuroses in trying to keep her safe while being here. For example, she gets a ball as a gift. She plays with the ball, and of course it falls on the floor. The floor has germs, so we have to wash the ball before she can have it back, and guess what…Emily now has a way to make Mommy & Daddy jump up and down all day just by going oops, and dropping the ball. That’s just a small example, it goes on all day.

Now though, we just sit and wait. This is probably the hardest part of Emily’s hospital stays, she feels good, but she can’t go home. When she was getting chemo, she was weak, and laid in bed watching cartoons and being catered to. After surgeries, she has sedation, and the same thing, kind of lounging with no real desire to go anywhere. But right now, although the numbers say she’s sick, she feels great but cannot leave. Hence, we have a caged tiger here, and heaven help the person who doesn’t keep her entertained. Luckily this time around we aren’t in isolation and she can at least go for walks.

The anti-fungal that Emily is being treated with, is administered by IV and since her central line is gone, they don’t want to risk us trying to give it at home. So aside from that medicine, and some IV antibiotics, we have nothing to do this week but wait for these darn infections to leave her body, and get on with the next phase of her treatment.

So, as always, thanks for your thoughts and prayers, and until later,

Have a great day, and God Bless,

David & Diane

Sunday, June 20, 2004 8:33 AM CDT

Good morning,

Just wanted to give a quick update. Emily is still in the hospital, but actually doing well. She still has a positive blood culture, meaning the yeast that was present in her initial blood culture is still there, even though she has been on the anti-fungal medication for 5 days. Clinically, she is doing great, no fevers, very active, and feeling good. She has even started growing hair again, she has a downy layer, like peach fuzz. We are calling her Fuzzy Wuzzy. (do any of you remember the soap called fuzzy wuzzy that would grow fuzz, and then come off when you wet it? Just a stroll down memory lane!) She has had a difficult time dealing with 2 IV's in her arms and daily blood draws, something she hasn't had since her Broviac (central line) was put in last Sept. We are hoping to have a new Broviac next week.

These small "bumps in the road", are nothing compared to the miraculous news of Emily's No Evidence of Disease status. Hopefully, this week we will hear whether or not we have been selected for the Monoclonal antibody study. Add that to your prayers, as this treatment has shown wonderful results in preventing any reoccurance.

Good "day" and God Bless,
David and Diane

Wednesday, June 16, 2004 8:41 PM CDT

PRAISE GOD!!! PRAISE GOD!!! We finally got the official results today from Dr. Kramer. Emily is NED, NO EVIDENCE OF CANCER!!!!!!!! We are in amazement of the power of prayer!


We wanted to believe it, but wanted to hear it from our own Dr. Kramer, who told Diane....Emily is NED, NO EVIDENCE OF CANCER!! those words are precious to us. We are not finished yet, but those word give us, and Emily hope, that we can complete this plan that God has laid out for us. Thank ALL of you for your continued prayers and support.

Emily has been through so much, as many of you know. As she approuches her 4th birthday (July 11th!) you would not expect such insight from such a little girl....oh.....those of you that do not know her....I have only one thing to say.....WATCH OUT!!

This girl has changed the lives of all who surround her, with her good spirit, great disposition, and forgiveness ,she loves ALL her caregivers, be it her Doctors, her nurses, her staff, or her housekeepers Maria or Fanny in the hospital, she will ALWAYS push the call bell and say "my pump is beeping.....thank you"

We want EVERYONE to join with us, PLEASE, and thank GOD for His care, and give praise and thanks for continuing to help Emily overcome this horrible disease.

We love you all!!

Good night and God Bless,

David and Diane

Tuesday, June 15, 2004 11:16 PM CDT

Hello All,

Today was filled with action and not all of it was good.

Emily started out her day with being awoken to the introduction of eye drops at 7:00 a.m. and then told that this vicious procedure would continue every 5 minutes until the doctor arrived. As it happened it wasn’t that bad, and the procedure got underway early, and the doctor was very forgiving and gentle. Emily’s having light blue eyes made it easier for him to analyze, and he was done very quickly.

Next, we went down for her surgery, and although she doesn’t understand what is going on, she has a confidence level with the people that have been working with her all these months, and went most agreeably.

Emily awoke from surgery with the “tubies” in her chest missing (which will temporarily be replaced by IV’s in her arms) and her feeding tube replaced and very sore. Although this seems very traumatic, it is part of completing this mission, and our job is now not so much medical as it is parental. Our job now is to help her understand these changes, and support her in things like using her hands even though she has IV’s in both of them.

Sometimes it is easy to be a “wanna-be-doctor”, which is similar to an armchair quarterback, only with much higher stakes. It sometimes seems easier to complain and think you are going to change something than to face up to an ugliness that you have to work through with your 3 year old daughter, and this I realized today. Emily has had a bump in the road that requires these changes and we have been spoiled by some of the things we have had in the past. The doctors haven’t changed, the treatment hasn’t changed, but we have had infections that change things and have to cope with them.

As it happens, Diane has spent the night teaching Emily some re-hab and she is wreaking almost as much havoc as if her hands were free (Emily that is, not Diane). My job now is to pick up tomorrow and not pity her situation but do as Diane did and “work through it.” I will do so, and be thankful for the success we have had thus far.

Emily is a strong girl, and will soon be four years old. While no child deserves to go through what she has been through, we are thankful to have such a strong support system around us to help her realize the importance of this treatment, and to have her achieve such results. We attribute all of these things to God’s good will, and his placing angels in our path that have made it possible for her to be at peace while going through tasks that she should never otherwise have had to face.

We are thankful for all of these things, and look forward to tomorrow.

Until then,

Good Night and God Bless,

David and Diane

Monday, June 14, 2004 10:24 PM CDT

Hello Friends and Family,

Today is filled with good news and bad news, but the good far outweighs the bad.

As of today, Emily’s MIBG scan (this is a test specifically for Neuroblastoma) was negative. In addition, her bone scan was negative, as well as her MRI and bone marrow scan. So as of now, we await the magic words from the doctors to tell us that she is free of disease.

The bad news is, we had to come to the emergency room Saturday night and have been here ever since. Emily got a fever that just continued to rise, and needed to be treated at once. While here, the different test results on her blood and urine revealed a urinary infection, and most recently, a fungus (yeast) growing in her central line. Although treatable, this looks like it will involve more surgery.

It seems that to effectively rid her of this growth, it is recommended that the central line be removed. So we have to have one operation to take the line out, then another after seven days to place a new one in. During that seven days she will be getting antibiotics for the urinary infection, and anti-fungal medicines for the yeast. It looks like she will have to get these treatments with an old fashioned IV in her arm, but there are so many things she is on (including her actual nutrition via TPN) that we don’t know how they are going to juggle it all. But I guess that’s for the doctors to all sit in a big room with Mahogany tables and plasma screen monitors, look at thick books while sipping on Starbucks coffee and scones, and say big words in Latin until they figure it out. Not to mention how is Emily ever going to cope with an IV in her arm when she has always had her “tubies” in her chest?

So, we have opted to not burden ourselves with all of that and just continue to bask in the good news we have gotten during this past week, and support Emily and keep her comfortable. Many people have told us that a big part of HER good attitude is OUR good attitude, and although the idea of 2 more procedures is distressing, it’s not worth letting that stress trickle down to Emily.

We have experienced great rewards from following our doctors’ advice up to now, and if this is what they say is best, then forward we go. Speaking of great doctors and great advice, we would like to extend an additional “Thank You” to Dr. Julie Long, Emily’s surgeon. We failed to mention her in our thank you’s on our last journal entry, and were most upset when we realized it. Dr. Long has taken such an interest in Emily’s progress far above the role of just her surgeon. From the 10 plus hours of surgery to successfully remove her tumor, or removing and replacing her central line, down to “Hello’s” in the hallway, she has continued to look after Emily as though she was her own child. Whether Emily is that special to her or if everyone gets this individual attention, we feel fortunate to have her in our life, caring for our daughter.

We will take on the day tomorrow with the faith we have in God, and in the support we have from all of you in the form of kind thoughts and heartfelt prayers. Thank you all for that support, and we will have those prayers with us tomorrow when we go in for the first of these surgeries.

Until later,

Good Night and God Bless,

David & Diane

Wednesday, June 9, 2004 9:03 PM CDT

Hello Dearest Friends and Family,

EMILY’S BONE MARROW TESTED NEGATIVE FOR CANCER!

This is probably the biggest and best news we have gotten since this nightmare began.

We still have a long way to go as far as treatment, and doctor & hospital visits, but this is certainly a move in the right direction. All of the scans we are going through right now are going to further determine the effectiveness of Emily’s treatment to date, and we are hoping for equally good news there as well.

We would like to thank everyone for his or her heartfelt messages and e-mails during this time, and also wanted to reassure everyone that prayer does work, in case there was any doubt.

We have had a lot of upsetting news over the last 9 months and a lot of heartache that followed, but keeping the faith, and relying on friends to give strength and prayer saw us through to the best news we could have expected today.

Although we have a way to go before we are “out of the woods”, we would like to take the time to thank people who have been there for us along the way. Starting with great thanks to our wonderful doctors Hanif, Meister, Kramer, and Schaefer who have lived with our situation 24 hours a day, and provided the treatment plan that has brought us to this point. We also recognize the tireless efforts of the nursing staff here. Although we can’t begin to name all of the wonderful nurses, they ( for starters, Angela, Sue, Ada, Sandy, Robert, Liza, Sallie, Carmen, Diana, Wendy, Sue, Kathy, Don, Kris, Allison, Patty, Kathleen, and all of the staff in Peds Surg & Ambulatory, and our apologies to anyone we missed )know who they are when they see Emily coming down the hall, and have to fight for the charge nurse to give her to them for their shift. Also, the administration here ( Maggie, Jinneal, Gracie, Nick ) who has gone out of their way to make coming here practically every single day a little more palatable.

And of course the fine doctors and nurses in the BMTU of Shands at University of Florida who oversaw the transplant that has given Emily a new Birthday, and made our stay there as pleasant as it could have been, considering the circumstances.

Last, but certainly not least, are all of the friends and family who stood by us providing prayer, support, conversation, food, or anything else you could imagine. In our group of friends and family, we include our friends in the clergy from both our church home and other churches throughout the community that have helped to provide support and encouragement during this most trying time.

In addition to witnessing the power of prayer, we have witnessed a true demonstration of the term ‘Community” and in this day and age of divisiveness, separation, and apathy, it was a welcome experience. To see absolute strangers come to our aid is something you would never expect to see, and we can only hope to be equally good citizens, no, humans when it is someone else who is affected, and we have a chance to help.

Again, Thank you to everyone, and feel comfortable in knowing that if you are reading this, you took part in changing someone’s life, for the better.

Good Night and God Bless,

David and Diane.

Monday, June 7, 2004 7:41 AM CDT

Hello Everyone,

A big prayer request goes out today.

We are asking that all of you that have helped us, and Emily get through these trying times, think of her today in your prayers.

Emily is going in for a Bone Marrow Aspiration today to determine whether the last 9 months of torture she has endured has eradicated this horrible disease. The procedure is this morning and the results should be soon to follow, and we are all praying for “NO EVIDENCE OF DISEASE.”

She will be undergoing a series of tests all this week like MRI, GFR, and Bone Scans. They will be looking at the area where her tumor was, her kidneys, bones, and anywhere else cancerous cells may be lurking. All of these things will go to determining the effectiveness of the treatment she has undergone, but today’s bone marrow is a huge indicator that we are praying will be negative.

Emily completed radiation last week, and came through it with relatively little side effects. If all of the scans come back negative, the next course of treatment will consist of her going on an oral chemotherapy like Accutane.

There are some other treatment programs designed to thwart the return of this cancer, and we are enrolled in studies for them. Problem is, we won’t know if we are eligible until the scans are complete, and then a computer will randomize us and we have a 50/50 chance of getting this treatment. The “good news/bad news” about this study is if she has no evidence of disease, there’s a 50hance of getting the therapy, but there is a 100hance of getting the drugs if there is still disease present. So it’s hard to have a feeling about whether you want the therapy or not.

In this case it’s easiest to say, as we have in the past, it’s in God’s hands now, and his will shall be done. He’s certainly done right by us so far!

Thanks to all of you for your thoughts and prayers, and until later,

Take care and God Bless,

David & Diane Adamson

Sunday, May 30, 2004 3:23 PM CDT

Hello All,

We have finally been discharged from the hospital.

What started out as a fever almost a week and a half ago, ended up being 10 days in the hospital for little Emily.

The infection was in her central line, but cultures have not grown since last Friday, so the antibiotics must be working. We were sent home on IV antibiotics, and a long list of other medicines. We are also battling a small adenovirus (comparable to a small cold for you or I) that could pose a big problem to Emily if it grows into something more, but so far she seems to be keeping it under control.

This last hospital stay was a tough one, only because Emily is tough to contain when she feels good. Even though the numbers (and the fever) said she was sick, she didn’t act like it at all. Just try and tell a 3-year-old who feels fine she cannot travel beyond the three feet of IV tubing she has connected to her…for 10 days straight!

So, the holiday weekend should prove to be a little more relaxed. Saturday, we were all home together for the first time in a week and a half. Sunday, we went back to the hospital for an update on Emily’s blood work and her counts appear to be coming up (WBC of 2.5 for those of you keeping track) but she is still requiring platelets fairly regularly.

With a little luck, and God’s blessing, we should be able to stay home Monday, and enjoy the Memorial Day holiday, and be well rested to start back on Tuesday with our routine. The good news is only 2 more days of radiation, and we are through with that phase of treatment. After that, we start with the scans that will determine if the cancer is gone, and from there, the treatment can go in a few different directions. Right now though, we just want to hear the words “NO EVIDENCE OF DISEASE” and whatever treatment regiment comes after that will be welcome.

So please remember our country’s vets past and present, and have a happy Memorial Day. As always, thanks for all your thoughts and prayers for Emily, and until next time,

Good Night and God Bless,

David & Diane

Sunday, May 23, 2004 10:46 PM CDT

Hello Friends and Family,

The weekend has shown Emily’s great winning spirit once again. She has kept the fever bug away, and if she can just get her counts up, we will be ready to go back in to radiation Monday morning. Of course “we” consists of mom or dad walking along side the stretcher while “she” gets put under and goes through this procedure every day by herself.

Emily has completed 5 rounds of radiation, and there are only 7 more to go, so we are hoping this gets done with no more delays. After which we will have a series of scans that may give us the best news we have had since diagnosis. We don’t know yet though, so we just hope and pray that this violent, ugly, assault on her little body was all for the bigger good. There has never been a clearer definition of “the ends justifying the means”, than this treatment, and we hope the cliché bears that out.

If we could measure Emily’s health by her behavior this weekend, she would already be discharged. She is running around as far as her IV line will let her, and she has been asking to “ go home soon”. That may sound normal to you & I , but fact is, she has never asked to go home and in most cases cries hysterically when we leave the hospital. All we can figure is that she has in a sense “grown up” (as far as becoming aware of her surroundings) in this environment, and may feel very comfortable with all the attention she gets in the hospital. But now, she has gotten to learn about life outside the hospital, and realizes it’s pretty nice at home with her own toys, her own family, and her sister, and wants to go home.

What goes on from here is determined completely by her blood levels tomorrow, so we can’t offer more than this right now. So, lets hope for the best, and pray we can move forward as soon as possible to get this phase of treatment behind us. As always, thank you for all your thoughts and prayers, and until later,

Good Night and God Bless,

David and Diane

Friday, May 21, 2004 11:08 PM CDT

Hello All,

A little bump in the road.

It seems that Emily’s “little fever” has evolved into something that is the result of an infection. Not an ordinary infection, but an infection originating (or residing) in the intravenous line that goes directly into her bloodstream. The same direct access that gives an immediate response to treatment by medication also can give immediate harm when things go wrong. Luckily, our doctors are all over it, and have already gotten a game plan in place to hopefully wipe it out with antibiotics, and we are hoping and praying that’s the way it goes.

There’s no doubt you really get spoiled being home, because you feel the difference when you get into the hospital. The room is great and the doctors and nurses are family by now, but it’s still away from home, and its different. What’s more, the family unit is separated, and that’s always a strain no matter what the distance. MaryGrace still misses her sister, and it shows every night at bedtime.

So, we’ll make the most of it, and pray for a good day tomorrow. So until then,
Thank you for all your thoughts and prayers.

Good Night and God Bless,

David & Diane

Thursday, May 20, 2004 8:29 PM CDT

Hello friends and family,

Greetings! Sorry for the long lapses in journal entries, the business of daily radiation treatments, blood and platelet transfusions, doctor visits, and trying to live a life for MaryGrace outside the hospital, has taken a toll, and we have finally succumbed to feeling exhausted!

We had a setback last night, Emily spiked a fever of 101.7 around 7pm, and had to go to the ER for admission. We were not sure what caused the fever, beacause as soon as she got to the hospital, her temp was normal,(go figure!!) and has remained normal all day today. One of her blood cultures did show positive results, but she was already on IV antibiotics, and her behavior did not show she was sick. She will remain in the hospital at least until tomorrow. We will see what tomorrows results show.

We finally took notice, and this treatment plan for Emily has been in the "active" role for 9 months. We can hardly believe it either, she has come so far, and remains totally AMAZING to all of us. Today she completed her 4th radiation treatment, and in spite of getting anesthesia every day, usually wakes up to the wonderful, happy, inquisitive little girl we know. Occasionally, yes we say "occasionally", the evil twin....oh....not MaryGrace(she is not evil, she is a good twin)...shall I say evil triplet appears. This little girl looks just like Emily, talks like Emily, but only shows her ugly face when Emily has had the anesthesia. We have named her Meredith (a name almost chosen for Emily, but Diane's grandmother was Emily, so that name took 1st place) Meredith is quite nasty when she wakes up from the anesthesia, and usually allows no one to do anything for her. She usually yells quite loudly when either daddy or mommy is near, and would prefer the local environmental worker to deliver her care, only because everyone else is there, ready to deliver her care. Basically, she is agitated, not sleepy after this anesthesia, which confuses all of our doctors. We, in turn, know, oh its just Meredith! Meredith usually goes away after about 2 hours, but getting through those 2 hours can sometimes be worse than anything ever experienced by a parent!! We are happy to announce that she has only 8 more radiation treatments, and ??maybe?? Meredith will be gone, too.

Until tomorrow, (we will try to keep up our updates!!)

Good night and God Bless,

David and Diane

Monday, May 17, 2004 9:08 PM CDT

Hello Friends and Family,

Day 1 of radiation is complete!

It's a day like today, that makes you realize how little we really know about cancer. You always hear about “radiation”, but few have really lived through it to know what it’s all about, and truth be told, it’s not as threatening as it seems (the radiation that is, not the cancer).

Although it may seem a bit fearful to think there is so much radiation being released that everyone has to hide behind lead doors and walls during the treatment, but compared to the side effects we have lived through so far, it’s minor by comparison.

The big celebration is that it appears that Emily’s blood work was “off” on Friday (be it a bad sample or lab error) and her counts were great today. She was more than eligible for her treatment, and it’s a load off our minds to know she’s not going backwards in her recovery.

Emily is constantly happy, and is talking more and more each day. She continues to play with her sister until the time she has to go to bed, and if the girls had it their way, they would play, and dance & sing all night.

We will continue to go to radiation every day until she has completed 12 treatments, and work in Emily’s blood requirements (transfusions) in between. We are thankful for a good day, and are in hopes of a good night, so until tomorrow,

Good Night and God Bless,

David & Diane

Sunday, May 16, 2004 9:01 PM CDT

Hello Everybody,

Well, a very hectic week has passed, but the worst week living at home beats the best week in the hospital (much less out of town).

Emily’s spirit has been great, and we can truly say we have never seen her more active. She is performing around the house with microphones and dancing the likes of which we have never seen. She and MaryGrace are having such fun when they are home together, and it’s heartbreaking to have to separate them every morning.

We did have an opportunity to finally unpack and get our life back to semi-normal, and we are quickly getting caught up on our day-to-day lives. However, we do still have the daily visits to the doctor / hospital and Friday’s visit was a bit alarming.

First, they delayed our starting radiation due to some discrepancies in the protocol of treatment, and the area to be radiated. However, since that was resolved, Emily’s counts have dropped and it’s a coin toss as to whether we will begin treatment on Monday or if it will be delayed. She seems to be great, but the blood work will be the deciding factor. Hopefully, we will be underway tomorrow (Monday), but we will let you know.

We had the opportunity to go to church last weekend (before Emily’s counts dropped) and it was such a warm feeling to be in the presence of so many people who have been praying for Emily. Although we know all of you have been doing the same, we have never gotten so many people in one place before and it was very nice to see the out pouring of love and caring.

Tomorrow is the big day as far as the starting of the next phase of Emily’s treatment, and as soon as we hear, we will update you in this page.

Thanks for all your thoughts and prayers, and until later,

Good Night and God Bless,

David & Diane

Friday, May 7, 2004 5:38 PM CDT

Hi friends and family,

To those of you reading every day, we're so sorry for the long lapse in journal writing. We can honestly say, our lives have almost gotten boring. Emily has been home now, for 6 days, and if she had hair, you would never know how sick she was 2 weeks ago. She has certainly enjoyed being home, and has been so happy and playful. Her days still involve her daily trip to the Doctor's office, frequent platelet and blood transfusions, but at the end of the day, she goes home to her own bed, and the comfort of her home.

Today Emily and David had their 1st radiation simulation. Today they made her body mold, to ensure that the exact area needing radiation would be localized. She will probably be starting radiation after May 15th, for 2 weeks. She will need sedation daily for those 2 weeks.

Emily enjoyed seeing ALL her friends from Joe DiMaggio, and they enjoyed seeing her. In the six weeks we've been gone, people have changed departments, left, and been hired. But those who know Emily couldn't wait to see her shy smile, and plump rosy cheeks.

She is keeping her weight up and hopefully her nutrition will gradually switch from IV to G-tube, and eventually to, getting all her meals by mouth. She has started asking for food and liquids little by little, and we hope that actual meals with MaryGrace will soon be shared.

Speaking of MaryGrace, she is so happy to have her sister at home, she runs home from school waiting to hug Emily, and start playing. It's nice to see them reunited after that long period apart, and the twins bond is back in full effect.

We are hoping for a quiet weekend as Emily just got a recharge ( platelet transfusion ) tonight and should be good until we go back Monday. We will be going to church Sunday for the first time in a while ( due to Emily's health )and it will be nice to take part in the celebration of God's miracle in Emily and her continuing recovery. Thanks again for all the thoughts and prayers for Emily, and we will update you all again soon. Until then,

Good Night and God Bless,

David & Diane

Tuesday, May 4, 2004 0:28 AM CDT

Hello All,

Well our first day back was quite eventful.

After a good night's sleep in my own bed, with my own wife, and after tucking in my own kids, we awoke refreshed and ready to take on the day.

MaryGrace was off to school, we organized Emily's drugs, Diane was off to work, and we ( Emily & I ) were off to the doctor's office.

As we expected we needed blood products badly, and for those of you who see the time posted at the top of this journal entry, will see what time we got home (that is automatically put there by the web host when we make an entry).

Emily's spirits are great, and she seems to be recovering wonderfully. Everyone was so happy to see her today, and more happy to see in her in such good shape. The parade of nurses that came in to see her tonight while getting blood was amazing. The love and concern they have for little Emily is a testament to just how much the people here at Joe DiMaggio missed her, and didn't forget about her just because she was gone, or not their patient.

Well, if I am to be up in the morning I better end this for now, because it's back to the doctor first thing tomorrow. Hopefully her blood will start holding it's own soon, and we can start spacing out these visits a little more. Until then,

Good Night and God Bless,

David & Diane

Sunday, May 2, 2004 9:37 PM CDT

Hi Friends and Family,

WE'RE HOME!!! YEAH!!! Thank God, Emily was discharged from Shands today @ 2:26 pm, and mentally, emotionally, and finally physically....we were on our way home to South Florida. The traffic was horrible, I guess leaving central Florida and traveling thru Orlando, going south on a Sunday afternoon, you can not expect to have an easy day of driving, that is an understatement. David did an excellent job of redirecting his family towards our home base, an easier job driving, than his daily job of hanging TPN, and giving Emily all her meds, Hopefully, I can be a little more help, now that we are all home.

We arrived home to our yard (and our neighbors, too) covered in yellow ribbons and ballons, thanks to Aunt Kathy, and our neighbor, Nancy. Emily was beside herself, she was so excited. She had been saying, "we're almost home, right" since about Kissimmee, so when she finally recognized our Cooper City Walmart, she knew we were almost home. When she saw the house, she was just so surprised and happy. It was beautiful. She ran into the house to get MaryGrace and Grandma, to show them.(surprise, they had already seen it!)

Emily had a few new toys to show MaryGrace, and Marygrace proceeded to own all of them!! Fortunately, Emily doesn't really care, she is more than happy sharing, and by tomorrow, neither of them will remember who brought them into the house. They both immediately began their normal play time, and it was so beautiful to see that the time spent apart has not affected them at all.

David and Emily will return to our Dr.'s Kramer, Schaefer, Meister, and Hanif tomorrow. We are still on daily office visits, but now, David has to drive 20 minutes into Hollywood, not walk 50 steps to Shands...Oh the price to be at home!!!

Thanks AGAIN for all the support. We are ALL happy to be home!

Good night and God Bless,

David and Diane

Saturday, May 1, 2004 9:51 PM CDT

Hello All,

We are together again as a family…almost. Mommy’s here and we are awaiting final word that little Emily can head out and leave this town for good.

We got our morning medicines, and lab work, and while we waited all day for the results, when we got them they were wrong. The numbers we were given about Emily’s blood, if to be believed, would have put her right back in the hospital, and we insisted that we get new blood drawn, even though it was 6:00 at night on a Saturday.

This new blood work showed Emily to be in the great shape that she acts like she’s in, and that was a little easier for us to accept prior to our long drive home.

We took Emily to a horse farm today for retired horses, and it was a nice setting for her to be (1) away from people, (2) see the horses, and (3) have some physical activity to give her lungs a workout.

We are sitting on pins and needles hoping there is no fever, and upon our exam tomorrow, will get our “ get out of jail free card “, and head straight home. I know I said no predictions about going home, so I am very guarded about my announcement. But I feel good about this one.

Thanks for all the great e-mails, and encouraging words. Until later,

Good Night and God Bless,

David & Diane

Friday, April 30, 2004 9:37 PM CDT

Good Evening Friends and Family,

Well, this may be one of our last updates from Gainesville, and my eyeballs will appreciate that. Although Emily is almost always asleep when I write these, I still keep the room dark and typing is quite a strain.

Our visit to the doctor today was filled with instructions on going home, and how things will proceed from here. It’s like a changing of the guard and they are turning little Emily over to our beloved group in Hollywood to manage the side effects of the transplant, and get her completely healed up from it.

We are far from done with treatment, but we have concluded a huge part of it and just to have it behind us brings a comforting feeling. I won’t get into all that remains to be done, it’s too monotonous & technical to put in print and expect anyone to enjoy reading it. No, I’ll save that until a day when I have NOTHING to write, and bore you tears with all the details.

After our hospital visit this morning, Emily and I took a car ride and just visited some of the small towns around Gainesville (near where I grew up) and she seemed to have a good time and a good nap. I was dismayed to learn from a small shop owner that my old high school has become completely racially divided and ridden with gangs. There were 7 arrests made just this past school year for kids carrying firearms in school, and countless incidents of violence. We thought South Florida was bad, but here we are in the middle of the Bible Belt and it’s just as bad as any major city in this country. It’s a sad state of affairs, no matter where you’re from.

Emily’s appetite is coming back, ever so slightly but anything she eats is a celebration right now. She is also fond of her bottled water, so her digestive system must be repairing itself. More than anything though, her spirit is coming back, and she is every bit the three and a half year old that her sister is (at least in the attitude department).

If things go our way, we will go home Sunday, and on Monday, we will see our doctors there. I look forward to seeing everyone (mostly my family) and it will be a welcome change to get back home. Until later,

Good Night and God Bless,

David & Diane

Thursday, April 29, 2004 8:08 PM CDT

Good Evening All,

I have never said it before, but it’s much easier to feed this page when there are horribly complicated medically eventful things to report on. So, when Emily is doing okay ( or dare I say good ) this diary seems to be lacking content, so please forgive me if it’s short.

As it happens, Emily went to the clinic today, and her counts were average, and platelet transfusion is being held off until tomorrow. Her red blood cells are holding up much better, therefore, all we really have to look for is the depletion of platelets.

I took Emily to the historic town of Micanopy after clinic today, but she was not impressed with the ongoing feud between St. Augustine and Micanopy. It seems there is a dispute as to, which is the oldest civilized town in the State of Florida, so I opted to just buy her ice cream, which she did not eat, and I threw it away. Like I said, things are not quite so glamorous when she is well.

Clinic again tomorrow will dictate when they will send us home, so lets all hope for the best, and prepare for the worse. The worse case scenario is out of my imagination right now, but I’m sticking with the positive side of things, and hoping we will be driving south soon.

Again, Thanks for all your thoughts and prayers, and until tomorrow’s results,

Good Night and God Bless,

David & Diane

Wednesday, April 28, 2004 10:24 PM CDT

Hello All,

We broke out again, now let’s hope it’s for good.

The doctors were happy with Emily’s progress this morning, so after a.m. rounds they sent us packing. Her counts are stable and no fevers ever since we were admitted. They cultured her blood and urine, no growth there, and the chest x-ray was clear as well. So on paper, she’s perfect.

We spent the afternoon, moving back to the motel room, and had to await the home health nurse. I think you have to prove you know what you’re doing with the home health care, or they come in the middle of the night and take your child away. So I have to nervously perform all the things I do every night for Emily but only now it’s in front of a nurse that’s not my wife, and I have to hope I don’t screw up.

After that anxiety-fest, Emily went to sleep and it’s great to just watch her sleep and know that tonight she won’t be interrupted by nurses and IV pumps, and will hopefully have happy dreams.

Tomorrow is back to the outpatient clinic to see how her blood counts are holding up, and if we’re lucky, we’ll have the rest of the day to just go out and do something. Let’s hope! Until then,

Good Night and God Bless,

David & Diane

Tuesday, April 27, 2004 7:24 PM CDT

Hello Everyone,

Our first day back in the BMTU was relatively uneventful, but the good news is, there’s been no bad news.

Emily’s white blood cell count took a major jump as did her ANC, which is at 3281 today (or as of midnight last night). These figures are over double what they were Sunday, and the doctors say we are heading out of the woods (let’s hope that means out of Gainesville) quickly now. So provided Emily hasn’t contracted some sort of bacterial infection, she should be all healed up by weeks end. But no more predictions about leaving, I’ve learned my lesson about that one.

Emily is very difficult to contain when she is hospitalized but doesn’t feel bad. Even if she only has IV fluids running as a precaution, we still have to be very protective of the line that goes into her chest. That is not always easy when a 3-year-old wants to take off running or start playing ball. It’s also very easy to forget that her immune system is still compromised when she is seemingly so healthy and happy, but ultimate infection precautions still have to be observed at all times. Right down to the 8 million hand washings a day.

Emily spent a great deal of time with the people from Arts in Medicine on a painting that will be shared by several kids in the hospital here. Once completed, all of the kids’ names will be written on the back, and it will be auctioned off in a fundraiser for the Children’s Miracle Network later this year. She has quite an artistic flair, but insists on doing it all with her left hand. Everything from drawing, to painting to eating (back when she ate) is with her left hand so I guess she’s going to be a lefty.

Well, lets hope for an increased blood count tonight, and for the continuation of Emily’s ever increasing health. Thanks for everything, mostly the thoughts and prayers for her.

Good Night and God Bless,

David & Diane

Monday, April 26, 2004 7:29 PM CDT

Hello Cherished Friends and Family,

Is the glass half full…or half-empty. It’s all in the perception.

We went to the out patient clinic this morning to get Emily’s blood work, and presumably a couple of transfusions, and the doctor went to call our doctor(s) in Hollywood to make arrangements to come home. At right about the end of the exam, the physician assistant helped Emily down from the exam table, and said to me, “she feels warm to me”. For those of you not in this world (cancer world), let me brief you; these words strike fear into any patient no matter how well they are doing because fever represents infection, and at whatever level, it has to be addressed.

Sure enough, her temperature was climbing, and we were rushed to radiology for a chest x-ray, and admitted to a room faster than you can say “not gonna get on the Florida Turnpike today”. Mind you, we weren’t going to leave today anyway, but we were certainly making plans, and looking forward to this stay being over in a few days. What’s more, we had blood cultures drawn, urine cultures, and the x-ray.

But, the “glass half-full” dictates that this could have been much worse, and once I got past my own selfish concerns, I saw how. We could have been halfway home when she spiked a fever, and not been able to see either doctor (Gainesville or Hollywood) because of our distance, and been stuck in some ER somewhere where running water is a luxury. Or worse yet, Diane could have taken off work after all this time, and come here, and the fever hit, and ties her up until the doctor lets us leave, so no gain there.

Bottom line, we have had a setback, but every day can’t be good news and the news could be much worse. Fact is, Emily’s spirit is great, and so we spend a few more days in the Shands Hotel Suite (also known as room 4260), and hopefully get home by the end of the week.

So, keep the prayers coming, and let’s hope this fever was nothing major, and we’ll be home soon. Thanks to all of you, and until tomorrow,

Good Night and God Bless,

David & Diane

Sunday, April 25, 2004 8:11 PM CDT

Hello All,

Well, Mommy’s gone.

After a blissful weekend of family togetherness, and great medical results, Diane had to go back home. I will surely say this was much more difficult for her than the last departure.

Last time, she left a nearly lifeless baby who struggled to speak and slept almost all day, and the cold walls of the hospital were not tough to leave behind. But today, she was leaving Emily in the height of her recovery, and the interaction between the two of them was something to witness. If you took a Norman Rockwell, a Hallmark card, a Kodak moment, and a Publix holiday commercial, rolled them all together that would be this weekend.

Emily is speaking in quite full sentences, and has expressions and sayings we have never heard before (some of which we are wondering where she got them). If things weren’t going well enough, when Emily woke up this morning and said, “Good Morning Mommy”; the whole trip was well worth whatever pain would later ensue. That’s the first time she has said that in 5 weeks and it was angelic.

We noticed something else about Emily this weekend. It’s her patience. We take for granted when we spend hours on end in procedures, transfusions, traveling, etc. and Emily never says anything. Since when does a three year old sit in a sterile room for hours with doctors and nurses coming in and poking & prodding, and not get antsy? She just accepts it, and can entertain herself with the smallest things. It’s as if she knows she is expected to be patient and just wait things out. It’s not normal, but we are blessed to have such a good child.

Tomorrow is a big visit with the doctor, and we may get our discharge to go home, but it’s going to be complicated. The home health providers are not the same here as the ones in South Florida so we have to make sure we don’t have a lapse in the delivery in her IV medicines while going between doctors and pharmacies. But as I have said before, it’s a good problem to have. I’ll pay the pharmacist to mix the drugs at midnight if he has to just so we can reassemble our family unit and live under one roof again. Emily’s ANC is up to 1520 today and that’s the highest it’s been yet.

Let’s all hope for good news, and a good week for all of us. We will keep you posted as of our visit tomorrow, and until then,

Good Night and God Bless,

David & Diane

Saturday, April 24, 2004 9:52 PM CDT

Hello Everybody,

Well Mommy arrived safely (all be it late), and Emily couldn’t be happier. We got a good night’s sleep and a good morning of breakfast and fun before going to the hospital. Once there, we found that Emily needed platelets again and the hospital was nice enough to tell us to go home (imagine, we now call this motel “home”), and when the blood products were available, we could come back. This was nice because we would otherwise have sat in the hospital for 4 hours total waiting.

Emily is talking up a storm, and is progressing every day. She still won’t eat or drink, but first things first. She is happy and healthy, and that’s our big concern right now.

We did note a big difference in the local news tonight while we watched together. In South Florida, we are used to stories about 8-year-olds carrying guns to school and killing their friends, and major cocaine trafficking throughout the waterways. Here, we watched the 2 lead stories that consisted of a rabid otter attacking some swimmers, and 2 senior citizens trafficking in “ jugs of clear liquid, believed to be moonshine”. It does seem to be more innocent here, and it is a big contrast to what we call “life” in South Florida.

Tomorrow calls for more blood tests, so there’s really no news until we see the doctor on Monday. So we say to everyone, celebrate your Sunday, relax, and gear up for a great week ahead. We hold the best of hope in our coming home next week, and Emily’s health will tell the tale. So until then,

Good Night and God Bless,

David & Diane

Friday, April 23, 2004 9:47 PM CDT

Hello All, and Happy Friday !

Mommy’s coming !!!

We had a good day this morning at the outpatient clinic, and although Emily needed platelets ( she was at 8 ), she was otherwise great. She is talking now, interacting with the doctors & nurses, and basically returning to her same adorable self as she was before we came here.

The second biggest news item of the day, was Emily’s doctor exam. He said that if she continues to heal the way she has been and her GI system gets back to normal, he would work on sending her home Monday. That’s HOME, home, and THIS Monday. Nothing’s guaranteed, but she has shocked everyone with her good post-transplant health, and I’ll skip all the accolades Mom & I got as to helping speed her recovery.

The biggest news is Diane is coming here as we speak (well I guess we’re not speaking, so I should say “ as I write “ ). She flew into Orlando tonight, and rented a car and is driving here to see her baby. She should be here sometime before midnight. Of course leave it to me to wreck that well intended idea too. She was going to leave Sunday night to be at work Monday, but if Emily gets discharged, Diane will most likely want to stay and all of us go home together. I won’t know how this works out until she gets here, but I would say, “ It’s a good problem to have”. Emily has potentially beaten the usual recovery time by weeks, and we are so grateful that the doctors are working to get her home soon.

So, I am off to get ready for the arrival of my wife, and hope all of you have as happy a weekend as we hope to.

Thank you all again for the continued support, letters, e-mails, gifts, and prayers, we can’t say enough how much it has all been appreciated. Reading and receiving these things may seem small to any one of you, but let me say this, we enjoy it, and get encouraged, and subsequently our attitude & feelings rub off on Emily. More than one health care professional has told us how her demeanor has helped her healing. So our mood helps her mood, and her mood is getting her better, so again, Thank you.

Good Night and God Bless,

David & Diane

Thursday, April 22, 2004 10:42 PM CDT

Hello Friends and Family,

Well we busted out!

After a final once over from the doctor, we were given our walking papers this afternoon. Problem is, by the time the hospital was ready for us to go Emily fell asleep, and would have rather stayed there than be woken up. But, she got up, got dressed and she left with attitude.

It was kind of funny there today. As word got around that we were leaving, one at a time, people came to me and said” nothing personal, but I hope to never see you here again”. Once you get past the initial sound of the comment, it was quite an endearing thing to say. By the end of the day, I was in the groove telling everyone I hoped I never set foot in that horrible place again as long as I lived…and realized I may be going a little too far with it.

Then I got to go to our motel and wait for the home health nurse who educated me on every word in the Shands Hospital mission statement, every aspect of the privacy act (13 pages), and how to safeguard our home for fall precautions for the elderly. Oh, by the way, she spent 5 minutes telling me how to give Emily’s IV medicine. Don’t get me wrong, I don’t mean to sound like an ingrate, but I would have rather spent more time on the practical healthcare issues than the philosophy behind them.

Fact is, the machines aren’t that difficult, they practically run themselves and my biggest job with Emily now is preventing infection. Just when I didn’t think that there was anything left to safeguard against that we didn’t already know about, a new nurse has a whole new list of potential hazards and Emily is still very vulnerable, so no slipping up.

We had a few little emotional issues today that were really heartbreaking. It started when we were leaving the hospital, and the last nurse we saw was the first nurse we had when we arrived, so that was good for a little misty eyeball action, but then it got bad. Every time we have ever left the hospital in the past, we have gone “home” to Mommy. Today, everyone kept telling Emily she was going home, and when we arrived at the motel, the questions started. Suffice to say, she misses her family terribly, and I have been trying to just come up with diversions ever since. But I must be honest, Spongebob is no match for “where is Mommy?” Thank goodness we at least have cell phones to patch the gap until we are together again.

Tomorrow starts out with a trip to the outpatient clinic, and once we get our good news, we will update all of you. We may possibly even do a “midday” update, if we get home in time. Until then,

Good Night and God Bless,

David & Diane

Wednesday, April 21, 2004 9:32 PM CDT

Hello All,

I imagine by now it sounds monotonous, but Emily has improved again today, and it looks like we’re off to our palatial estate (motel room) tomorrow. Her ANC/AGC count has once again jumped and is now at…wait; maybe I shouldn’t give the number right now. If I wait until the end you’ll have to read all of my mindless drivel before you get the good stuff. Any way, she was at 1200 as of midnight last night, and according to the doctors, it’s only going up from here.

Aside from Emily’s stomach and GI system not working yet, she appears to be in great shape. She does get weak easily, but between the chemo and the 3 straight weeks in a bed with no movement (2 of those weeks basically asleep all day), it’s understandable. We are looking forward to lots of activity once we get out of the hospital. All of the doctors and nurses have agreed, that a child’s activity level, mood, and appetite increases when out of here. There’s no documented reason for it; it just seems to work that way. Maybe kids hate hospitals as much as adults, but just can’t say it, so their behavior shows us how happy they are to get out. Footnote to all of the hardworking nurses reading this right now, please do not take this personal. She’s just a child and not responsible for her behavior, and her father is a dunce and not responsible for his. It just looks like they like being home (or anywhere else than the hospital) more.

Well I have to save my energy for my multitude of nursing classes tomorrow, and am not looking forward to all the information I am going to have to digest. They all say it’s easy, but that’s a nurse saying that. I’m sure Stephen Hawking will tell you quantum physics is easy, but that doesn’t make it so for you & I.

So tomorrow, we’ll be transmitting our ramblings from the comfort of a real bed and we’ll be eating real food. Well, not really, it will be fast food but at least identifiable by the logo on the to-go boxes. This is as opposed to the anonymous trays that show up here 3 times a day and you spend the first half- hour trying to guess what it is, and the second half-hour trying to eat it. Of course Emily will be getting her meals through her veins until her stomach gets up to speed, and if you ask me, that’s the way to go. No dishes, no mess, no bad taste, and someone else does it all for you. So, until then,

Good Night and God Bless,

David & Diane

Tuesday, April 20, 2004 9:47 PM CDT

Hello Friends and Family,

Today, although uneventful, was again an improvement. Emily’s ANC count was 960 as of midnight last night and we are waiting to see what she’s up to now, almost 24 hours later.

Emily has gone over 5 straight days with absolutely no fever, and is trying to talk more. All of her antibiotics have been discontinued and the only real IV she has going is her nutrition, which appears she will stay on until her GI system kicks back into gear.

We are going to be discharged to the motel room Thursday, and I have a whole slew of home health instructions coming my way. There will be a home health nursing agency to work with me until I can do these same IV’s in the room as those that are running right now in the hospital. Our homecoming however will not be until Emily’s body has worked through the toxicity of all the chemo, and that’s a decision only the doctors can make.

Hopefully though, once we are in the room, we can take on little diversions to occupy Emily like car rides or trips to secluded parks where there are no people, and let her see the light of day. The poor thing has been in a room, primarily in a bed for almost 5 weeks now, and she’s due a little fresh air.

Today was MaryGrace’s first day back at school and everyone was very glad to see her, and we’re glad to get her back into a structured setting. There are small things that come from the concentrated time with Mommy, Daddy & Grandma while living in a motel room that make life different than being home. It seems it is more of adjustment for her to go home than it was to go to Gainesville. I don’t envy Diane having to re-program her, especially with her Dad & Sister still not home, I’m sure it’s confusing for her.

Well, our fingers are crossed and prayers lifted up for another day of continued healing for Emily and I feel confident tomorrow will be a big day. Until then,

Good Night and God Bless,

David & Diane

Monday, April 19, 2004 11:17 PM CDT

Hello All,

Emily’s day started out with a bit of a backslide, and her white blood cell count dropped back to 1.0, but by midday, was back and went up to 1.5!
The doctors said we have to expect certain pullbacks in the cell numbers during the engraftment process. I guess we can’t be miraculous EVERY day, but she’s still way ahead of schedule as far as recovery goes.

Emily’s body is still gobbling up platelets, and we are still getting transfusions every day but she’s grown quite used to the procedure (see photo above).

After a very hectic morning and some very sad good byes, Diane got on the road with MaryGrace and Grandma and headed home. She made great time, got home safely, and by now is resting peacefully. However, Emily did get to visit with Grandma and MaryGrace before leaving, and she got to show off her wagon (shown on the photo page).

The doctors have re-started Emily’s tube feedings and her stomach has tolerated it just fine. This is significant because her stomach and GI system have not been operating for around 2 weeks now, and this could very well have been a shock to the system. But once again, she did great, and things are progressing wonderfully in planning for a discharge this week.

Thanks for the continued thoughts and prayers, letters, e-mails, and phone calls (our family back at Memorial called today) and we look forward to delivering more good news as the days go by. Until later,

Good Night and God Bless,

David & Diane

Sunday, April 18, 2004 9:37 PM CDT

Hello Dearest Friends and Family,

Emily’s news just keeps getting better, and not to bore you, but we have to give the numbers. White blood cell count has exceeded the fractions, and was 1.0 this morning and was 1.1 this afternoon. Her ANC is 890, and everyone here is pleased, and her demeanor reflects these same increases.

However, I must say that nothing, and I do mean NOTHING, has made a difference in Emily’s mood these last few days like tonight when Grandma came to visit. She (Grandma) afforded Diane & I a night out tonight and it was the first time we have spent time together in a month, and one of only a few times in the past 8 months we have been able to go out together. It was brief, but enjoyable all the same. We took MaryGrace with us, but she has matured so much during this treatment process, it was like just having another friend at the table, not a three year old.

However, all this joy comes to an abrupt halt as of tonight. Diane has to go back home to maintain her job (who has graciously allowed her tons of time off, without so much as a question of when she would be back) and with her goes MaryGrace and Grandma. So that leaves Emily and I here to go it alone. This normally isn’t that big of a deal except that it is away from home, and I have grown used to sharing the responsibilities with Diane.

When people question “WHY” in these scenarios (Emily’s cancer) most will say there are lessons embedded in these horrible tragedies. When you sit and try to figure out what the lesson is, it never seems as important as the abomination itself. In fact, our understanding or interpretation of what we might think the lesson is seems trivial by comparison. Nevertheless, I strained my little pea brain to get something out of this.

As I sit here tonight, and our poor little recovering hero girl goes to sleep after a long day, I feel a great loneliness come over me. This is not lonely in the traditional sense, but rather something I have never quite known. I have not realized just how much I have relied on my wife through all of this. Aside from the few people who have been through this, (and thank God they are few) nobody could know what it feels like to go through this except the other person who shared in the creation of this innocent child. Diane shares with me every second that we await MRI results and every palm sweating session as we get ready for a doctor consult when they say, “ We would like to see BOTH OF YOU at 3:00 today”. We’re together for every tear Emily sheds as she is getting any number of torturous tests or procedures and she tries to be brave and not cry. Nobody could ever be expected to know what the loneliness is when that crucial pillar is taken away. I equate it to the idea that I could never understand what it must be like for a single parent to go through this same thing alone.

However, circumstances being what they are, Diane must go and manage the other half of our life, and I am certain she will go to bed tonight with much these same feelings. In fact, she is having a very difficult time leaving, and what mother wouldn’t? It reminds me of the time the girls were born and they sent Diane home with only one baby while the other remained in intensive care, it was heart wrenching to say the least, but together we got through it. And together we will get through this.

I feel good knowing that Emily is doing so well, but moreover, I feel good in knowing that Diane is confident in what I will be doing here. It is going to take a great deal of resolve for her to drive home knowing her baby is still in the hospital. However, I feel that resolve will come from the special bond that has been continually reinforced over the past 8 months, and we both know that we can and will do all that is needed to keep Emily in the best of care.

So bottom line, don’t let something like this be what it takes to bring you closer to your significant other, do it now. If you have someone, treasure him or her, as you never know when they (or you) will be faced with things much bigger than the monotony of day to day life. And if you think this just sounds like a big love letter to my wife…maybe it is.

Good Night and God Bless,

David & Diane

Saturday, April 17, 2004 9:06 PM CDT

Hi All,

Day +15

We can not tell all of you how wonderful it feels to have continued good news. Thanks for all those encouraging words on Emily's guestbook. We really look forward to reading them every day, and it has meant so much to us, all of you taking time to give us those words of encouragement. THANKS!

Emily's counts continue to rise, and we are so happy. Today, her white count was 0.9, and ANC 672!! WOW, we can see those big jumps on paper, but more importantly, we can see it in our little girl's face. Yesterday, we saw her 1st smile and giggle in over 3 weeks, it was the most beautiful thing in the world, and need I say (for those of you who know what a cry baby I am normally!)I started crying. I know Emily looks at me with a puzzled look like, "here she goes again". It was a memorable, beautiful moment.

She has asked to get into the chair for the past 2 days, and also, we took 3 wagon rides today. Maybe David could take a picture of her in her wagon and put it on the web page. Tomorrow, we will see if walking the halls of BMTU is on the itinerary. I think her mouth is healing as well, as she is talking a little bit more. No more nosebleeds, either. She was officially taken off ALL antibiotics today, and now we will slowly progress to see if her tummy can tolerate her g-tube feedings again.(I think they may try tomorrow) She still needs fairly frequent platelet transfusions, but in time, her bone marrow will compensate, and she will produce her own platelets. Patience is a lesson we continue to learn.

The doctor again stated that she will most probably be discharged to the motel next week. The room is now ready for her, complete with many of her toys from home. We had to limit the number of things brought to the hospital, but she will be so happy to play with her familiar toys.

Thank you all, for everything. Until tomorrow, day +16!

Good night and God Bless,

David and Diane

Friday, April 16, 2004 9:29 PM CDT

Hello Friends and Family,

The news about Emily’s recovery just gets better by the day and sometimes by the hour!

Her white blood cell count was up to 0.6 this morning and this evening is now at 0.7, and climbing. Her ANC was 539 and the doctors were happy to see it already over 500 so quickly. In fact, the doctor said today, and I quote, “for this protocol (cancer treatment program), Emily has recovered better than any child I have ever seen”.

The Little Red Wagon was her mode of transportation today once again, and she spent more time in the halls this morning than in bed. Mommy is getting a good bit of exercise from it as well, as it is quite strenuous dragging Emily’s IV pole with it’s 6 plus pumps and accessories.

The doctors are gradually peeling back her antibiotics and other medicines, with the hopes she no longer needs them. With any luck, we will be able to start back on the nightly feedings and regular food very soon. It’s all good news.

There are some definite signs we have been here too long though. MaryGrace is really starting to act out (but who can blame her for having to live in a motel room for a month), and terribly misses her sister. Other signs include Grandma’s growing social club at the pool, the use of the word “y’all” in day to day conversation and Diane & I have grown to “enjoy” the hospital food.

We don’t know exact dates yet, but the doctors are throwing around the word “discharge”, and Emily’s improving status is making it sound as though it will be sooner rather than later. Of course that doesn’t mean coming home, it means going to live in our motel room until she is stable enough to go home. During that time, we will make daily trips back to the hospital to check her blood work, and make sure all is well. The rest of the time during the day she will be isolated to protect her from potential illness while she gets her immune system back. Sounds like a lot of TV, reading, and arts & crafts for the two of us, I hope the housekeepers at the motel are ready for the mess of a 3 year old cooped up inside all day.

Emily is slumbering peacefully, and shortly I will be too. No more staying up all night watching monitors, or asking questions of the nurses, or just watching her breathe…. Her recent turnabout has brought us great peace.

Thanks to all of you for your thoughts and prayers, and until later,

Good Night and God Bless,

David & Diane

Thursday, April 15, 2004 9:21 PM CDT

Hello Friends,

Greetings on Day +13.

Another good day for lab results. Emily's increasing trends have continued today, and her white count today was 0.5. Our doctors have assured us that the counts are definitely on their way up. We have been anticipating the feeling of finally being able to breathe that sigh of relief. I'm not sure if we are there yet, but remain optimistic that it will happen soon. Understanding the entire stem cell transplant procedure gives one a feeling of awe considering how wonderful the human body is, and respect of all the medical personnel that have enabled Emily to experience it. It truly is amazing.

Emily's activity level was a little lower than yesterday, but considering the regeneration going on, we are not surprised. We took Emily for a ride in the red wagon, but honestly, she could have cared less. They have started the transition of changing her medicine from the IV route, back to oral, and she has tolerated them very well. Also, no nosebleeds since yesterday. YEAH!!! We are happy taking those baby steps, and look forward that each day will be a little better than the day before.

We got news that Emily may be discharged (to the motel) sometime next week. This was also very encouraging to us. The motel was good enough to steam clean the carpet tomorrow, and we plan to do a "once over" everything in the room with bleach. This will be Emily and David's home for a few weeks, and we need to keep it as sterile as possible. Once discharged, they will be going to the Bone Marrow Transplant Clinic daily for blood work and transfusions, if needed. Diane, MaryGrace, and Grandma will be returning home, at that time, and Diane will be returning to work until Emily and David are officially discharged from Shands.

Hoping and praying day +14 brings an even better day for Emily.

Good Night and God Bless,

David and Diane

Wednesday, April 14, 2004 11:14 PM CDT

Hello Friends and Family,

Today is now Day +12 (post transplant) and Emily’s health is on its way up!

As of noon today, Emily’s white blood cells were at 0.4 and we are jumping up & down about it. That is double what they were just 12 hours earlier and this signifies that her body is on it’s way to recovery (we hope) and her behavior is matching the numbers. She has wanted to sit in the chair to watch TV as opposed to lying in the bed all day. She has started drinking water, and she is talking. These are all behaviors we haven’t seen in almost a week, and it’s wonderful to watch her gradual metamorphosis into a happy child again. In addition, she is making neutrophils, which are also greatly helping the cause.

We came here in such fear of all the side effects we read and heard about, and then were further shocked into reality by the doctors and staff that told us how bad it could be. Telling us how bad it was going to get could never have prepared us for what we saw and went through with Emily, but watching her now come out of it, allows us to look back and be thankful it wasn’t worse than it was.

The staff here has a neat little thing they do (that we hear is done in a lot of pediatric hospitals) where patients get to paint one of the ceiling tiles in the unit. They are then put up in the halls. At first you might wonder “ who is ever going to see a ceiling tile? “, but it’s for the scores of people being transported around these halls on their backs on stretchers to one test or another. It is a bit of a diversion for the patients, and Emily will get to leave her mark in this hospital for years and years to come.

We look forward to even better numbers tomorrow, and we may even bring back the Little Red Wagon for a spin if Emily’s up to it!

Until tomorrow, Good Night and God Bless,

David & Diane

Tuesday, April 13, 2004 5:33 PM CDT

HI friends,

DAY +11

Am writing a bit early tonight, as Emily has just rolled over and feels more like a nap than watching Brother Bear.

We had TREMENDOUS news today, as her blood count showed that her white blood cell count was 0.2 !!!(normal is 5.0 -10.0) She had 30.0 Neutrophils, which are the cells they use to gauge if the bone marrow is beginning to work. Praise God, it looks like those Resurrection Cells are in the very beginning stages of working. We are elated!! Actually, we can't wait till the AM labs to see how much she has progressed. Once the cells are being made, all the areas that were damaged by the chemo will start repairing themselves. She has already started talking, not alot, but things like "I want juice". It is music to our ears.

We have the ongoing problem with the nosebleeds, though, as the delicate nasal tissue has been made raw following the chemo. She had about 5 nosebleeds today, not major ones, but still upsetting. We are trying to keep Emily calm, as crying, coughing, and basically any aggrevation will trigger a nosebleed. You can tell she feels a little better now, because Miss E had developed quite an attitude. She doesn't show it all the time, but especially when she doesn't feel like taking her mouth care, or changing positions. Her latest is just closing her eyes when she wants you to go away. It doesn't matter if you are in the middle of a sentence, when she is done with you, she just closes her eyes, and ta da, you are gone. It is very funny to watch. I think she DESERVES that attitude!

This journey is not over yet, but we can not think of a stronger story showing the power of prayer. We are numb at His goodness and faithfullness, and thank each of you supporting Emily and us, with your daily prayers. Don't stop praying, please, IT WORKS!!!

Good Night and God Bless,

David and Diane

Monday, April 12, 2004 10:54 PM CDT

Hello Everyone,

We’re back in our room on the fourth floor, and it feels good to be back. They left our room just the way it was when we went to ICU, we didn’t even have to clean it out. They all knew Emily would turn around quickly and saving her room for her was a testament to that belief. The Pediatric ICU here was very nice and our nurses were excellent. It was comforting to have Emily being watched so closely during this scary time, and it all paid off.

Today has been pretty uneventful once we got moved back in, and Emily has been sleeping most of the day. We did take her for a ride in her Red Wagon, and all she wanted was to lay back down in her bed (a big change from the other day when she wanted to ride in it 24/7). They are sliding her back into her routine of medicines since our ICU visit, and she seems to tolerate everything that has gone into her stomach this evening, and that’s good news.

The doctor visited late this afternoon, and said he feels her “ Resurrection Cells “ should start to kick in any time now, and we are clinging to the blood work numbers every time they draw a new sample. In fact, they are coming in at midnight to take blood for her scheduled review, and it could be VERY good news, but we don’t know yet.

So until we have more to report, it’s so long for now.

Good Night and God Bless,

David & Diane

Sunday, April 11, 2004 4:29 PM CDT

Happy Easter everyone,

Sorry for the delay in the updates, but things have been a bit hectic around here. Emily is still in the Pediatric ICU, but they expect to transfer her back down to the Bone Marrow Transplant Unit tomorrow morning. Her kidney function has stabilized, she has had no fevers for over 24 hours, her nosebleeds have stopped, and her appearance is less puffy. There is a very delicate balance between giving her kidneys enough fluid, and overloading her system. She is still on the morphine drip and sleeping quite a bit....duh!!!

We saw some good news as far as her engraftment is concerned. Yesterday, her blood showed she was making lymphocytes, the first type of white blood cells made by the bone marrow. There weren't a ton of them, but they were identified, so we are hoping and praying that engraftment will occur soon. They say, soon after that happens, the mouth sores miraculously start healing, and she will generally feel and look much better. She spoke for the 1st time yesterday, telling grandma that "I have smokey, too". "Smokey" is grandma's nebulizer machine, and Emily has oxygen called a blow-by, that just sort of lies on her pillow and passively gives oxygen. It was encouraging to hear those words, as she has only grunted and done sign language for the past week.

David and I had been feeling very strongly that Emily would engraft on Easter. When we actually thought about it, we had spent so many holidays in the hospital....Labor Day, Halloween, Thanksgiving, Christmas, Valentines Day, and now, Easter. Next year, each of those holidays will have so much more meaning, as we can all be together as a family once again. David had started calling her stem cells, "Resurrection Cells", because we thought they would start working today. They might still, its only 6pm, they have 6 more hours till Easter is officially over.

Hoping all of you have enjoyed a wonderful Easter. We will let you all know when the Resurrection Cells kick in.

Good night and God Bless,

David and Diane

Saturday, April 10, 2004 0:51 AM CDT

Hello All,

“Good Friday” wasn’t so good.

We (Diane) suffered through Emily's nosebleeds and vomiting throughout the night, and into the following day (Friday). We had spells where it would stop, but if anything upset her or even woke her up, the draining blood and mucous immediately started the whole thing over again.

This lasted until the evening, and around 7:00 p.m. the doctors opted to transfer Emily to the Intensive Care Unit for observation through the night. It is undoubtedly the best thing for her right now, but it is the cause of a bit of anxiety, as we have to learn a whole new “family” and their way of doing things.

It is now around 2:00 a.m. and I must admit, the move to the ICU was not bad at all. There is a warm fuzzy feeling that comes with having so many doctors, pharmacists, drugs and blood products readily available right outside your door. Emily is getting regular blood transfusions as well as platelets daily now. Again, we do have the security of knowing that everything we need is right at our fingertips. There is no waiting for the blood bank to deliver, no waiting for pain medicines, and no waiting for a doctor to call back just to have a question answered, it’s all already here.

A new problem has cropped up now and it is a bit scary. The ICU doctors have gotten concerned about Emily’s kidney function and feel it may be declining. They will be scrutinizing her blood work over the next hours and will be ordering a renal ultrasound in the morning to get a better picture. It seems that this chemo really hit her hard, and may have done a bit of a number on her kidneys. Although the numbers have seemingly looked good so far, it wouldn’t take much to tip the scales and whatever did it, it happened today.

We cannot really do more than we are right now, so for now, we just pray, and ask that everyone around us do the same. We’ve had a lot of frightening news in this journey, and a little at a time; we have been delivered out of all of it. We are certain we will be delivered out of this most recent crisis too, and our aforementioned faith will see us through it.

So for now, Good Night and God Bless,

David & Diane

Friday, April 9, 2004 9:15 AM CDT

Hi All,

Just a morning update because so much happened after midnight last night.

Emily's small nosebleed turned into a major event, so severe that the 1st unit of platelets didn't even touch it. Because of the mucositus in her mouth, we were unable to pinch her nose, to apply pressure. They did pack her nose with a blood clotting solution, gave her another unit of platelets, and also a unit of blood. She finally fell asleep at 4:45am,and is wiped out.

The doctors came in this am and informed us there was a strong possibility she would have to go to ICU for closer monitoring. The bleeding has stopped, but the fevers remain. Please continue to pray for her strength and healing.

Love,
David and Diane

Thursday, April 8, 2004 10:52 PM CDT

Hi Friends,

Greetings on day +6. Emily had a fairly good night, and woke this am, with no fever. She was low grade, but no actual fever until 4pm, then she spiked with a vengence, 103. The fevers have become a constant with us. She has been sleeping alot, which is good for her. David had a long talk with one of her doctors, and he assured David that as bad as she seemed, her body was strong, as well as her spirit, and she was on her way to recovery. We are so impressed with how reassuring the staff and doctors are with the symptoms that Emily is experiencing. I won't say it makes us feel good, but it is a comfort that nothing is unexpected.

We have had some nosebleeds tonight, again, very expected, especially when her platelets are low. Many of you remember the past nosebleeds that Emily has had, so that first little trickle brought memories that I didn't want to revisit. Fortunately, it was a minor nosebleed, although she will most probably need platelets tonight.

So much for our update. We are worried that we are depressing everyone with all our news, so we thought we would give some comic relief. I read these a while back, and although most of you may not understand all of these, we thought they were very true for our lives.

YOU KNOW YOUR'E THE PARENT OF A CHILD WITH CANCER WHEN....
1)Kids with hair look kind of strange to you.
2)You can sleep anywhere, and anything that reclines more than 15 degrees looks "comfy".
3)You don't realize the sharps container is on the kitchen table until halfway thru dinner.
4)You actually enjoy the ride to the ER at 3am because there isn't any traffic.
5)You hear a truck backing up and think it's an IV pump beeping.
6)You can eat with one hand and hold an emesis basin with the other.
7)Medical students ask to borrow your notes.
8)Waiting an hour doesn't seem like a long time compared to the wait at the doctor's office.
9)You make Jello with Pedialite.
10)Every little thing can make you cry in an instant, but this gives you a chuckle.

Until tommorrow, day +7. Keep praying.

Good night and God Bless,

David and Diane

Wednesday, April 7, 2004 11:14 PM CDT

Hello Friends and family,

Well, we have made it through day +5, and these days, we are thankful for the smallest of milestones in Emily’s recovery.

In her current condition, she isn’t really able to tell us what hurts or what feels okay, and to us, she just looks miserable. She is at her most peaceful when she’s sleeping, be it drug induced or just old fashioned exhausted. To be honest, when we weigh out how bad she feels when she’s awake, we’d rather see her stay asleep. Her fevers continue, and all we can do is treat them, watch over her, and wait.

Emily went down for a CT Scan this morning and was an angel for the test, considering how she feels. They scanned her sinus area, chest & abdomen to make sure she is doing okay. The tests revealed that she has what appears to be a pneumonia developing in her lung, this would make her third one since her treatment started. Needless to say, she is on practically every antibiotic there is, so the doctors here are right on top of it, and they assured us this is not out of the ordinary for her situation.

This is a phrase that has almost become bothersome to us. As reassuring and supportive as everyone is trying to be here, it is so hard to see all of these things happening to our little baby, and hear that “it’s to be expected”. Our saving grace is the fact that everyone who is caring for Emily right now does this all day every day and he or she knows what to expect, before it happens. I suppose it is better to know that her side effects are not “out of the ordinary”, but you have to really pity the child/person whose side effects are. I mean, if this is normal, how horrible is abnormal?

Anyway, she is sleeping now, and we are into day +6. We are hoping for a better day for her, but we will play with the cards we’re dealt, and do our best to keep her comfortable. Thanks again for all the cards, letters, and e-mails, and most of all your thoughts and prayers.

Good Night and God Bless,

David & Diane

Tuesday, April 6, 2004 11:16 PM CDT

Hi All,

We have almost made it through another day. In about an hour we will officially be in day +5. We have been told to expect another 5 to 7 days for Emily's stem cells to start working. She continues to fight high fevers and pain. The doctors have decided to add another antibiotic tonight (for a total of 4!), but it is important to cover all the bases. Hopefully, these antibiotics will take care of any germ that could enter her body, considering she has NO immunity at all to anything.

Emily remains such a brave and strong girl. She is so cooperative with the doctors and staff, although she has little patience with her parents! Even in her weakened state, she manages to wave bye bye to everyone leaving her room, and even tries to smile, although the mouth sores make it nearly impossible. We are so proud of her. This disease has made her so mature, and has robbed her of so much of her innocence. Other parents of children with cancer have assured us that these young children will not remember anything about their treatment , but we will remember EVERYTHING. It is a comfort to know that Emily won't.

Thanks from our hearts for all the encouraging words on Emily's guestbook. It is an honor to know ALL of you.

Good night and God Bless,

David and Diane

Monday, April 5, 2004 9:57 PM CDT

Hello All,

We are at the end of Day +3, and things are pretty much status quo.

Emily still has obvious signs of mouth pain and has given up speaking to us altogether. She has also started sleeping a lot. The doctor said not to worry though. In fact, he said, “who wants to be awake to endure pain?” and we have to agree.

It is times like these though that we feel the most helpless. We share the days here like always, but any other time we would be keeping her company, playing games, fighting over the TV remote, painting, walking, or what have you. Now, we just sit and watch her sleep, occasionally harass the nurses about the pain medicine and the dosage, and wait for Emily to maybe turn over a quarter inch so we can call home and say “ I think she’s feeling better!”

I don’t know that she can even appreciate the fact we are here. But, now that I think about it, maybe that’s for the best. She won’t be able to remember the horror of this whole thing or the pain that came with it, and she won’t be able to tell the hospital cafeteria police that we have eaten every one of her meal trays since the day we arrived. How come the cafeteria hasn’t caught on to the fact we are practically ordering Emily’s body weight in food for each meal, and it’s supposed to be for a three-year-old ?!? Hey, what they don’t know…(ha, ha).

We have been told to not expect much change for at least the next week. So, if our journal entries become boring and tedious, you may have to resort to reading something interesting on the net like software licensing agreements, until Emily turns the corner. It’s all up to the stem cells now, and it’s hard to do, but we just have to sit and wait.

It’s nice that this period of rest and reflection comes during Holy Week, and hopefully we can all make the most of this time for whatever our concerns are. Thank you all again for your concern for Emily, and your prayers.

Good Night and God Bless,

David & Diane

Sunday, April 4, 2004 9:31 PM CDT

HI all,

Day +2 has almost come to an end. It has been a difficult day for Emily. As we have mentioned before, all the staff and doctors told us that the few days following transplant would be the most difficult, and we are experiencing it full throttle. Emily continues to be on a morphine drip to control the pain of her mouth and throat. She is taking a few small sips of water occaisionally, which is a good sign. We walked in the hall 3 times today, although it was certainly against her will. I won't say she is happy doing it, but she does oblige. Fevers continue to be another stressor, and her temp has ranged between 100.5 and 102.5. These things hopefully will improve with each day. She seems to be most comfortable in her bed, surrounded by her pillow from home, her blanket, her bunny, and sippy cup of water. Those few comfort items have made a huge difference for her.

David took MaryGrace to a local park, and she was so happy to run and play. She has not stopped talking about going down the slide, although grandma almost lost it when she went down backwards! Why do all kids do the same silly things? I know MaryGrace misses her friends and all the activity at Rock Creek Academy.

It has been a long day, and now, my little girl's eyes are finally shut. Looking forward to day +3.

Good night and God Bless,

David and Diane

Saturday, April 3, 2004 9:07 PM CST

Hello concerned friends and family,

The transplant is complete, and we have finally entered into the part of the schedule where the numbers are positive now, and not negative. Not to get to into a whole “mojo” thing, but it’s just better that every day isn’t measured as a negative something. That’s pretty much along the same lines as not wanting her transplant done on April Fool’s Day as it was originally scheduled…call us crazy.

So, welcome to Day +1, and join us in thanks that nothing went wrong yesterday. With day 1 comes all they told us about, but I think hearing it was a lot easier than seeing it. I mean, after seeing her so much worse today, I have to look back at the entry from the other day and wonder why Diane didn’t smack me for making such an issue of what she looked like then. But, as bad as she appears and feels now, they did warn us!

Poor little Emily’s cheeks are puffed out from the mouth sores and irritation, and as you can imagine taking anything by mouth is out of the question. In addition, the IV fluids have added to her swollen look, and balancing the amount of fluid she gets each day is a job unto itself (for the doctors, not us). She has also been carrying quite the fever, running from the mid 100’s on up to 103 and anyone who has been around this sort of thing knows that’s a scary thing, but again, it’s expected.

Her tube feedings were her only source of nutrition, and they have now been stopped and replaced by IV nourishment, and this appears to have curbed the nausea. Along with that is a whole battery of medicines, electrolytes, and antibiotics that all run around the clock. She got 2 blood transfusions and a platelet transfusion this morning, and we can expect many more by the sound of things. Until her own stem cells start producing the needed red blood cells, white blood cells, and platelets, we are just going to have to rely on those little goody bags from the blood bank.

So, at the end of day one, we are thankful that we haven’t had any real tragedies, and hope for a better day tomorrow. All we can do is keep on top of her getting her pain medicine, exercise rigorous mouth care to heal and/or prevent mouth sores, and try to provide diversions so she doesn’t dwell on how bad she feels.

Thank you for your thoughts and prayers,

With all our loving best,

David & Diane

Friday, April 2, 2004 8:52 PM CST

Hi Friends and Family,

Well day 0 is almost finished, a day we looked forward to, and also dreaded. Emily sailed through the 2nd half of her stem cell transplant, although she did spike a fever of 102 immediately prior to the transfusion. Later tonight it went up to 103.1, and need I say, the treatment plan has changed, including blood, urine, and mouth cultures, antibiotics,and continuous monitoring. She remains on the morphine drip, so she pretty much is in and out of it. Her mouth is causing her a tremendous amount of pain. Sleep is healing, so I think her sleeping will help, especially after such an overwhelming day. The staff here has been wishing her "Happy New Birthday", and has encouraged us to remember April 2nd as the day she got a new life. It is a truly unbelievable event, and the body has a wonderful way of repairing itself. We are praying for engraftment to occur early. (when the stem cells actually start working inside the bone marrow, usually taking 10 days to 2 weeks) Up until that time, Emily will have no immune system, so her environment literally must be sterile.

We have already started to have difficulty doing Emily's mouth care. It is important to keep her mouth clean, because of the breakdown from the mouth sores, and also to keep extra bacteria out of her mouth. Her mouth care consists of swabbing an antifungal liquid, and some numbing medicine on a spongy swab. She has more fear than pain, but is afraid to open her mouth. We are doing as best as we can, considering the 3 year old temperment.

Tommorow we move onto day +1.(it's nice to be in the positives!) Please continue to pray that the chemo side effects are minimal, and that she engrafts soon. Also, a special thank you to ALL of you who have sent Shands CareMail to Emily, and those who have sent cards to her. It makes her day to get those letters, and brings so much joy into her life. Thanks again.

Good Night and God Bless,

David and Diane

Friday, April 2, 2004 1:41 PM CST

Hi All

Greetings on day 0!! This is the 1st update, of several we hope to add to the web page today. Emily completed the first half of her stem cell transplant. They started it at 1:07, and it was done by 1:30. She will be getting the 2nd half around 5:00pm. They split the entire infusion up in two, because of the chemical additives necessary to freeze them. When thawed, it gives off an odor similar to creamed corn, or garlic, which is expelled in Emily over the next 24 hours. Anyway...back to Emily, she did FANTASTIC! She laid in bed quietly during the infusion, while 7 people stared intently at her. We were laughing at her mind thinking "why are all these people staring at me?" She really feels terrible today, the nausea has been compounded with the beginning of mouth sores (which by the way, go through her entire intestinal tract) which has led to a tummy ache and diarrhea. She also has a low grade fever, which they are expecting to spike sometime later. She basically feels awful, but these are expected, and the staff is doing everything they can to make her comfortable. She is now on IV Morphine to help with the mouth pain.

The stem cells were infused without incident, and we hope she does as well with the 2nd half. We will update again after that infusion, and expect to see some new pictures as well.

Thank you all, and Thank God for His care.

Love,

David and Diane

Thursday, April 1, 2004 8:46 PM CST

Hello All,

The countdown is over and the day is upon us!

Tomorrow at around 1:00 p.m. Emily will get her Stem Cell Transplant, and we can’t be more excited.

We have a lot of peripheral problems right now, but none of them are going to prohibit tomorrow’s procedure ( a lot of “P”s in that sentence ). Her liver enzymes are even higher than the elevated numbers they were at yesterday, but a specialist is supposed to review the numbers and meet with us about it. Also, her nutrition is really at a minimum. But, as we said yesterday, a little “ trickle feeding “ that stays in her system, is more valuable than nothing, or IV nutrition. It is beneficial to keep the GI tract working because it greatly aids in her recovery “post-transplant” and we are going to need all the help we can get.

Mommy stayed with Emily today and there was effectively NO vomiting. Now is this to say that Daddy makes her sick? Hopefully that’s not it. I think the doctors have come up with the perfect combo of drugs to stabilize her nausea, and it’s so nice to see her without her head in a basin.

Having read the histories of other children (and their parents) in this same situation, and talking to health care professionals who do this every day, we feel very fortunate about her health going into this procedure. As bad as we have felt about her vomiting, and her dropping blood counts, the people in charge say she’s great. We attribute this to good advice from our doctors back home, intense education and care by the staff here, Emily’s amazing spirit (and will to not stay in bed), and a whole lot of prayers answered.

Thank you all for those prayers, and whatever you do, PLEASE don’t stop.

Good night and God Bless,

David and Diane

Wednesday, March 31, 2004 9:00 PM CST

Hi friends and family,

Greetings on day -2. Emily continues to have a hard time with nausea and vomiting, although she has gone 15 hours with no vomiting, thanks to an aggressive approach from the doctors here. We have decresed her tube feedings to about 1 1/2 cans a day (down from 5/day), but it is necessary to keep her stomach mostly empty. This small amount still allows her intestinal tract to keep working, which is important. Emily also had a dramatic rise in her liver enzymes today, which could possibly be due to the strong chemo. She was started on some new medicines today, also, and they are closely monitoring her. Her spirit remains upbeat and pretty happy.

Emily's newest, bestest frind is the BMTU red wagon. Her "model" comes equipped with a pillow, blanket, multitude of masks, oh, and the ever available emesis basin. She becomes quite bossy in the direction she wishes to go. It is especially interesting when David or I are here by ourselves, because her IV pole holds a double pump, a single pump, 2 syringe pumps, and her g-tube feeding pump. Try to imagine going through a doorway pushing that, and pulling a wagon. We are amusing to others in the hallway watching this little girl with attitude, in pursuit of her "ride". She is funny!

Please keep Emily in your prayers these few days before transplant, and her abnormal liver enzymes. Please ask God to protect her from harm and pain. We wait for tomorrow, day -1.

Good night and God Bless,

David and Diane

Tuesday, March 30, 2004 9:46 PM CST

Good Evening,

The chemo is over, but the problems are not.

Emily’s nausea has gotten so bad that most all of her medications are IV now. What’s more, it’s beginning to look like she cannot tolerate anything in her stomach at all now. She didn’t have much of an appetite when we got here, but now her body is rejecting the nutrition that is being directly pumped into her stomach every night. So it’s no longer just dealing with a picky 3-year-olds eating habits, it’s a matter of the chemo shutting down her digestive system to the point it won’t allow basic minimal nutrition to get through.

This is a concern to us because in 3 days, her body is going to have to tap into every resource it has to get these new stem cells to take off, and if she is starved for those three days, what are they going to do for fuel? We’re sure the doctors will know what to do, but as a parent it is very frustrating to watch your baby just continually vomit every ounce of nutrition they’ve gotten for the day, and there’s nothing you can do about it.

Today is not really filled with funny stories or amusing anecdotes, in fact we’ve been walking on eggshells to make sure we don’t upset her to the point of nausea. We’re just trying to keep her happy, comfortable, keep all foreign smells away from her, and her favorite shows on TV, and wait for this to pass, and wait to see the doctor in the morning.

They told us to expect this, and even today we were told “ it’s going to get worse before it gets better “, so I guess we need to toughen up if it’s going to be worse than this. The hours seem like days when she’s like this, and it gets hard to imagine that just a couple days ago she was running around playing with her sister. To look down at her limp body sleeping and see the pale white skin and dark circled eyes, and know that inside she’s hungry, makes you ache as a parent.

It is at the end of days like this that all you have left is faith, and we will go to sleep with that faith tonight. We have faith that the doctors will have a plan tomorrow to nourish her and ease her suffering, and faith that we will be strong for her and be there to support her during this horrible time. But mostly, we must hold faith that when all is said and done, God’s plan is being carried out here…not ours.

As always, thank you all for your wonderful kind words and prayers. Emily’s mail has been pouring in and she looks forward to mail now every day, and loves opening it for Mommy & Daddy to read to her.

Good Night and God Bless,

David & Diane

Monday, March 29, 2004 10:15 PM CST

Hello Friends and family,

The countdown has begun, and Emily’s chemo will be finished around 10:30 a.m. – 11:00 a.m. tomorrow. The good thing about the chemo being over is we can more easily use those IV lines to treat her violent side effects, rather than have to juggle around the chemo lines. In fact, if her vomiting continues, they may even have to convert the medicines we give her in the feeding tube, to her IV line just to make sure she gets them in her system.

At that point (Tuesday a.m.) we will be at day –3, and that makes day 0 (Transplant Day) Friday, April 2nd, and we can’t wait. That will be a landmark day in her treatment, much like the day of her surgery. It will be the beginning of her body beginning to rebuild itself, and hopefully it will do so in a “ cancer free “ environment.

We just have to be prepared for the ugliness that comes before the “ rescue cells “ kick in, and we are informed and ready. Maybe a little too informed if that’s possible. In this case, ignorance may be bliss, but we need the knowledge to be able to care for her for what’s coming up. The doctors visit, the nurses visit, the physician assistants visit, but in the end, we are the ones with her 24/7 and when something happens, we want to be able to jump to her aid, and minimize her suffering.

We are thankful for the help, advice, and care provided by the doctors and staff here, as well as the support we have gotten from everyone back at home. Everyone has chipped in to help in some way from fundraising, to home cooked meals, to phone calls, to taking care of errands at home, to e-mails delivered to Emily, on down to just plain kind thoughts and prayers. To all of you who have been part of our support system (and you know who you are) through this most difficult time, we are appreciative. We thank you with all the energy we have left at the end of each day, and we thank God that we have you in our lives.

Have a great day, and join us in the countdown to Emily getting her “ rescue cells “ Friday.

Good Night, and God Bless you all,

David & Diane

Sunday, March 28, 2004 8:37 PM CST

Dear Friends,

Well, another day almost finished in our countdown, we are almost finished with day -5. Emily finished 1 of the 3 chemos this morning, and will officially be finished with the other 2 Tuesday morning around 11:00. Thank God, so far, she has done pretty well, a few bouts of vomiting, but a severe lack of appetite. The chemo tends to make everything taste metallic, so if hunger allows her to be hungry, she will usually give in to only one bite. We say over and over again how happy we are that she has a feeding tube, that allows us to give her all her daily nutrition, vitamins, and fluids, while she sleeps. It saves in the "parental begging" department, but as most of you know, not even begging will help a 3 year old to eat, even a healthy 3 year old!

We have been walking on eggshells, waiting for the symptoms to officially start. The staff here (Doctors, PA's, nurses, and just about anyone else involved in her care)have stressed all the bad effects of the chemo. We know, they want us to be informed, but hearing ALL the bad effects over and over can be a bit haunting. It's like waiting for a hurricane to hit...you know it's going to happen, you just don't know when or how bad it will be. We are just trying to prevent anything we can, from frequent mouth care, lots of diaper cream, keeping all smells to a minimum, etc., hoping all this helps. Please continue to keep Emily in your prayers during this time.

Looking forward to day -4!

Good night and God Bless,

David and Diane

Saturday, March 27, 2004 8:39 PM CST

Hello All,

Well, we have been rustled awake from our peaceful, blissful slumber that we thought was reality, a bit of normalcy for Emily. Although we enjoyed the time she was able to be a kid again, this awakening was as startling as a 5:00 a.m. reveille for a soldier’s first day of boot camp, and the drill sergeant was none other than Chemotherapy.

Emily had a vomiting spell for the first time in weeks last night, and it continued on into today. We got to the point that we had to ask the doctors to re-evaluate her nausea medications, as it was too unbearable to go through and not do something.

The staff is very receptive here and they spend a great deal of time listening to our concerns and explaining their possible solutions. Considering Emily’s reactions to this chemo, we are thankful for that. Even though this isn’t a “pediatric” hospital we are in, there is a certain comfort in the fact that everyone we see on the floor is in the same boat as we are. They have either themselves or a loved one that they are looking out for. They understand that all the “germ-phobias” are not neuroses, but actually doctors orders, and no one takes offense to you walking the other way when someone sneezes, or washing your hands immediately after meeting someone (including a doctor or nurse). In fact, this behavior is actually looked at as
“ admirable “.

Emily is certainly exercising her independence in this environment, to the point that she won’t let me open a door for her. If I do, she will intentionally stand there and wait for it to close, then open it herself, no matter how long it takes. They say it’s her way of gaining control over a situation she otherwise has no control over and if that means me standing there and letting her have her way for a few minutes, so be it.

She has had an exhausting day, so I am expecting an early night for her tonight, but you never know when all these different medicines come into play. So until later, we say good night and God bless.

All our best,

David & Diane

Friday, March 26, 2004 8:14 PM CST

Hi Friends,

Well, we have almost completed day -7. Emily finished her 1st day of chemo, pretty well, one episode of vomiting around 2 hours ago. Like we have said, she doesn't realize that she is supposed to act sick. She spent the day today roaming the halls of BMTU (Bone Marrow Transplant Unit). She has developed a very strange habit.....she loves to poke her tongue through the mask. A normal 10 minute walk goes through about 4 masks! The staff here just laughs when they see the little pink tongue poking through her yellow mask! Oh well, it's just Emily!

MaryGrace missed Emily alot, especially today, as she had only Grandma to run around with. We are trying to give her extra time, and activities to keep her mind occupied. MaryGrace especially enjoyed Emily at home these past 3 weeks, so it is harder for her not to be there playing with her.

Shands has a wonderful feature for patients admitted to the hospital. They can receive email, it gets printed, and delivered to the patient. If you would like to send a message to Emily, please follow the below instructions:

go to www.shands.org
go to "send a message to a patient"
enter Emily Adamson
enter Shands at UF
enter 4214 @BMTU
enter your information and message

We are sure Emily would be thrilled to get mail!!

Well, off to "night-night", looking forward to day -6 tommorow.

With love,

David and Diane

Thursday, March 25, 2004 9:34 PM CST

Hello Again Everyone,

We went to the hospital this morning and got through admission around 12:30 and met with the physicians, physician’s assistants, and nurses. By the time we got settled in, it was after two o’clock, and the doctor agreed it was best to begin this intense chemo tomorrow. We are actually kind of glad, because with the schedule being pushed back, we don’t have to do the Stem Cell Transplant on April 1st (April Fools Day), and it is now April 2nd.

We thought we were neurotic about cleanliness and germs, but we are far from up to par when it comes to the standards set forth by the Bone Marrow Transplant Unit. Even though she is getting a Stem Cell Transplant, the unit was built when all they did was Bone Marrow. We had an education session yesterday that lasted several hours, and it’s amazing how many different ways bacteria can make its way into an immune-suppressed child.

The staff here met us with big warm smiles and bottles of bleach and water solution for cleaning every single thing that comes into this room. We spent the first hour or so wiping down walls, shelves, TV remotes, windows, railings, tables, books, toys, etc. Anything that she may come in contact with has to remain germ free. The bleach is still burning my eyes and it’s been over 8 hours since we cleaned. Diane re-washed every piece of clothing, blankets, pillows, and bunny and brought them straight here so that any family or household germs don’t make their way into Emily’s room. Even food that we would normally allow her to go back and snack on now has to be thrown away. The list goes on and on, but whatever it takes to keep little Emily safe, we’ll do it.
.
A special “Thank You” goes out to the Child Life Specialists at Joe DiMaggio Children’s Hospital who so thoughtfully had a box of all of Emily’s favorite toys, and crafts delivered here before we even arrived and they even put a little something in for Mom & Dad

So, we’re off to sleep, and tomorrow starts the chemo, and Emily is in great spirits to take it on. As we continue to say to the staff here, and back home, “ nobody told her she’s supposed to be sick “. That’s how Emily lives her life…. If only we all had that same spirit.

Thanks again for all of the wonderful thoughts and prayers, and for making your thoughts known by signing the guest book. It feels good after an exhausting day of medical mayhem, to sit down and hear some encouraging words from a concerned friend (or stranger).

Until next time, take care and God Bless you all.

David & Diane

Wednesday, March 24, 2004 8:43 PM CST

Hi All,

Well, we completed our 3 day pre-transplant evaluation, and are ready for admission tomorrow at 10:00am. Emily is scheduled for the start of chemo tomorrow. Unfortunately, it will last 4 days, and be the strongest chemo yet, and the doctors have not minced words as to the side effects. We are ready to go, because we keep focused on the big picture, and know that this is the next step.

Emily has had a great 3 days, even though we have dragged her to every meeting, with every Dr. or assistant. She is very comfortable in our hotel room (with tiny refrigerator and stove!!), as post transplant, she and David will be there 24/7, with no time in the outdoors, unless covered with a mask. It is clear how much MaryGrace will miss her, as they have enjoyed playing with each other so much, in these small quarters, these past 3 days.

Please keep Emily in your prayers, as this chemo is EXTREME. Her day of transplant is April 1st. We will keep you all informed.

Tuesday, March 23, 2004 9:15 AM CST

Dearest Friends and family,

Well, we’re here in Gainesville! The next big phase of Emily’s treatment is underway, and we are getting ready.

We arrived here Sunday night around 10:30 p.m. and Monday was a series of meetings with the transplant coordinators who explained to us most of what we already knew from our doctors at home. Then, later that day, we had a meeting with the Physician Assistant who did a thorough physical exam and an extensive interview with us about Emily’s medical history.

Today (Tuesday), we have to go in for a Psychological Exam for Emily (even though I think we could use one right about now) and then meetings with financial counselors and social workers. I think these meetings are generic and for everyone because we’ve had 7 months of these same meetings and don’t think we’re going to see anything new today.

Wednesday is a pre-admission review, and then the big consultation with the doctor who is over the whole program. When we are done with that, then we go to an educational meeting with the Bone Marrow Transplant Unit for the rest of the day.

Then, we start Thursday and Emily gets admitted. She will receive 4 days of continuous (24 hours a day) chemotherapy in a dose stronger than she has ever had before. After that she will have 3 days of rest in the bed, and the day of transplant will be day 7, April 1st, (or day 0 in doctor talk but that’s too long to explain here). We have been warned over and over by everyone we talk to about the severity of the side effects, and are bracing for the worst.

Before we left, we attended the Captains dinner and silent auction for Emily’s fishing tournament, and have never met a nicer more generous group of people. The organizers of the tournament were happy to see Emily and glad that the fisherman, donors, and sponsors could put a face with their cause. It was a wonderful evening, and fun was had by all.

We will try and keep everyone updated here on Emily’s web page and we look forward to some great progress.

Thank you for your continued support, thoughts and prayers, and may God bless you all.

David & Diane

Sunday, February 29, 2004 10:42 PM CST

Dearest Friends and Family,

Well, it's almost 6 months to the day that we have been on this journey, and as most of you may know, Emily has completed her final chemo. Although we are far from out of the woods, it does feel good to say we are through with this phase of treatment.

We came home from the hospital on February 16, 2004 and Emily had a whole week of just being a kid before her "scan week" that began 2/23/04. She needed a bone scan, an MRI, an MIBG (a one week long cancer screening test), and a hearing test as we prepare to go to Gainesville for the stem cell transplant. She was originally scheduled to have these tests on an outpatient basis, but as fate would have it, no such luck!
Monday morning she was pale and running a fever so it was back to the hospital where we ave been ever since.

During our stay, we have gotten some rough news in the midst of all these tests. The hearing test revealed that Emily has permanent hearing loss in both ears from the side effects of the chemo, and although it is not a total loss, it's enough that she will need hearing aids to get through school and what not.
The bone scan (and MRI) uncovered a stress fracture in her foot that we had no idea she even had. We did know she had a bit of stiffness and discomfort in her legs and we all thought it was a result of the long stays in bed without movement, but it's a fracture. Therefore, she has to get a cast on her foot and it's up to the pediatric orthopedic specialists to tell us if it will be off in time for her to go transplant.

Once we solve these issues and a few other small things, we will hopefully be coming home and Emily will have a few weeks to play with her sister and put her time in the hospital in the back of her mind for a while. The tentative date for us to go to Gainesville for the transplant is March 22, 2004, but there are a lot of variables to consider between now and then, and we will just hope for the best.

We have had some great people looking out for us during these times, and it renews our faith in human kind. Everything from raffles in Emily's name orchestrated by Carol & Laura at Emily’s day care, to bake sales for her, and out and out solicitation of donations by our friend and neighbor Nancy just to help out the situation. We are appreciative of all these things as well as our family, friends like Kathy, Terri, Cindy, and Linda and Pastor Tim, who have walked this walk with us and continue to keep us strong in the face of all this adversity.

And of course we remain ever so grateful for HIS light, which shines on Emily each day, and continues the healing process for her.

Lastly, if you would like to see photos, or get more info, Emily's web site is www.caringbridge.org/fl/emilyadamson

Thank you all, and talk to you soon,

David & Diane

Thursday, February 5, 2004 8:58 AM CST

Hi Friends,

Just a note to let you know we brought Emily home from the hospital yesterday. Yes, we are rejoicing that our little girl is home, and able to sleep in her own bed next to her sister, who has missed her so much.

The doctors released her, and remained AMAZED at how well she has done. Her urinary stint was pulled Tuesday (ouch!!) and Emily continued with good urine output throughout the night. She has a little residual pain, localized in the left thigh, sort of like sciatica, because the nerves had been bruised from the surgery. She is getting medication for that, and hopefully will feel better soon.

We took Emily with us to daycare to pick up MaryGrace yesterday, and she was so excited to see her friends. She wanted to get out of the stroller and play, so we let her. You cannot imagine our pride in her, seeing her run (yes, run)! around after MaryGrace and her little friends. She wasn't quite as fast as them, but she had just as much vigor. Her spirit is a source of strength for us.

We return to the hospital next Tuesday, Feb. 10th, for admission for her LAST chemo!!, #6. We never imagined we could get to this point, but God has been so good to us, and answered so many of our prayers. Emily is home tonight because of God's wonderful grace.

Thanks again for all your love, support, and prayers.

Wednesday, January 28, 2004 10:14 PM CST

It is the 1st full day, post op. Emily completed her surgery at 8pm, last night, a full 10 hours after they started. Our surgeon, Dr. Julie Long was able to remove the entire mass, and not sacrifice any organs!! We are elated. The mass was literally everywhere in her pelvic region, but the left ureter was the only part affected by neuroblastoma, (a miracle)!!, and the urologist was able to remove the affected part and reconnect the ureter to the bladder. Tonight Emily is making clear yellow urine!!

It has been a rough road to follow, but we thank God for His answered prayers, and the love and support of our family and friends that has given us the support to get through each day.

Emily's recovery is not over, but we are through a very difficult part of it. Her remarkable strength and spirit continue to amaze everyone around her, especially me, her mother.

Sunday August 31, 2003

The day that will change our lives forever.

We had been having some difficulty with Emily with potty training. She would continually sit on the potty with no results. We had her to the pediatrician 3 times, where upon they diagnosed her with constipation .

The day of August 31st started like every day. It was not until the afternoon, that we realized there was a problem. Instead of swimming in the pool with MaryGrace, she wanted to lie down and watch cartoons. For dinner, she ate nothing. Around midnight, after crying, looking pale, and vomiting, we were off to the ER.

The doctors ordered the usual bloodwork and xrays, but were not able to find anything overt. By the Grace of God, our ER physician ordered an ultrasound, and then a cat scan. This confirmed that Emily had a large mass in her pelvis. After speaking to the admitting doctor, you can not imagine the disbelief when they felt the mass was malignant. This is a situation that no parent should have to deal with. The biopsy would confirm the diagnosis of Neuroblastoma.

After days of tears, sleeplessness, fears, and disbelief, we decided the only path, was to turn Emily over to God. We continue to do this every day. It is out of our hands, and in the hands of the Great Physician. We have been so blessed with a wonderful staff of doctors and nurses. We thank God for His care during this time.

Emily has completed 5 chemotherapies, and 4 surgeries. She has had a multitude of hospitalizations, 2 episodes of pneumonia, a bout of pseudomonas in her blood, and tons of fevers. In spite of everything she has gone through, her little spirit is amazing. She has been the teacher of bravery and strength.

Next Tuesday, January 27th, 2004, Emily will have surgery to remove the mass. It is a major surgery, but it is necessary. After recovery from surgery, she has the 6th chemo, then we are off to Shand’s Hospital at the University of Florida for Stem Cell Transplant.

We want to thank all of our family and friends for ALL the love and support given to us during this time. We just started this web page, but will try and update it frequently for those of you wanting updates.

And please, remember to say a prayer for Emily. We are praying for a miracle.

Thursday, January 22, 2004 4:58 PM CST

This poem was written by Amanda Gandolfo for Emily:

I picked a little star
let it twinkle in the sky
I made a little wish
as the sun set in the sky.

I said a little prayer
closed my eyes and held them tight
prayed for those who I love the most
prayed with all my might

Then the little star it sang to me
a song so low and sweet
that I smiled and felt all warm inside
and just had to take a peek

I called Mommy in to look at it
and Daddy came in too
and Sister was not far behind
cause her and I we knew

That our little star had come before
cause every nightfall when we prayed
it kept us warm and sang to us
before on our pillows we laid

We said our prayers and closed our eyes
prayed with our eyes closed tight
that those we love would be kept close
we prayed with all our might.

Click here to go back to the main page.

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