Tuesday, February 14, 2008

We were really feeling sad when everyone left and the day only got worse. Emily went to have her PICC line 'fixed' and then we were told it had to be replaced; and that the new one would have to go in the other arm. Emily was pretty upset - especially when she was told that there was no time for anesthesia. Ther nurse in charge lacked any kind of empathy; which was surprising for this hospital. I think it was the one bad apple here! After I had a melt down, we were saved by an angel, Dr. Lilly from anesthesia. She was the greatest. They had to call our doctor down from the floor because of the situation. It's over with and Emily now has a new PICC line in her right arm. Aunt Mimi arrived yesterday for ten days. She's good medicine. She's already done the laundry, cleaned our RMH room, and shopped for us at Kroger. She brought two boxes of mail over and we spent the afternoon reading all the cards and letters. The ones from the kids at 74th Street & Lakewood Elementary, were so cute! They were so personal; very heartwarming. We also received some great cards from Cheryl Pisoni's class but forgive me for not knowing what school they came from. Mail certainly brightened Emily's day! She hasn't thrown up in severala days but did receive a whole lot more chemo, including spinal chemo today. She is pretty sore all over. Chemo gives you bone pain. She has always described it as being beaten with a baseball bat. Today, they started her back on anti-biotics and an anti-fungal because she was running a low grade fever. She was also complaining of 'just not feeling right'; requesting that her vitals be taken. She is so in control! Many times, I feel like the child. We had our room moved. A change of scenery. It's a corner room with somewhat of a view - which is nice. Maybe we'll see snow. We are hoping Matt can get back down here. He came to Florida as soon as he heard. We also want to see Catherine and our "Gracie". Her teachers emailed us a picture of her for Valentine's Day! We miss home so much. We miss our family. Love you guys!

Keep praying - the bone marrow biopsy from yesterday shows that the chemo is working. We are waiting for the MRD numbers as well as the cytogenetics. Once these are received, the protocol could be altered. Lots of prayers are needed - for Emily - for all of these precious children.

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2/11/08
DON'T FORGET THE BONE MARROW DRIVE TOMORROW FROM 11-2 AT RUTLAND STORAGE; LOCATED AT 30TH AVE N & 9TH STR IN ST. PETE. YOU MUST BE AGE 18-60 AND IN GENERALLY GOOD HEALTH. OUR THANKS TO THE RUTLAND FAMILY FOR CHOOSING THIS AS A WAY TO HONOR BUD.

We had a very relaxing weekend with Catherine, Briana & Dave. We don't want them to leave! Emily hasn't barfed in two days and is even nibbling on different foods. Her counts have dropped so let's pray the chemo is seeking and destroying all those cancer cells. There is a problem with her PICC line. It isn't working. We are waiting to hear what the plan is.

Prayers are being answered. We hope to finalize alternative housing for the overflow of family. We are only able to house four in the hospital accomodations. Aunt Mimi comes Wednesday for ten days and we can't wait. The photographer here, Peter, has also agreed to take a 'Senior' portrait of Emily before her hair falls out. We are hoping to do it this week.

God Bless and please continue praying for Emily.

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Thursday 2/7/08
I just don’t know where to start. We were finally feeling comfortable – out of this ‘cancer’ world. I was recently cleaning out drawers and closets and I couldn’t believe how many ‘cancer’ t-shirts our family owned. I quietly donated a garbage bag full to migrant missions. It was in many ways, liberating to part with them.

We are now prisoners in this hell. 24/7 – watching Emily waste away. Her face already looking gaunt. Rubbing her back, I can feel every vertebrae – afraid to rub to hard; afraid I’ll leave bruises. I pull the recliner parallel to her bed at night – just to feel her tiny little hands in mine as she falls asleep. I can’t believe how boney they are already. Again, I fear I’ll crush them if I hold too tight. These past few days, it’s been constant wretching – trading one barf bucket for the next. She’s sad. We all are. It’s almost better to block out what ‘was’ just a few short weeks ago. We try not to go where we expected her to be just a few months from now – prom – graduation – college. Our family apart once again – Catherine; also robbed of her childhood; having to step into the role of mother and having to be without hers. The nights are long. The days even longer. Today we had visitors – our friends Jace and Ann from LA, and Stephanie and Lisa from CA. We all went through transplant together and were neighbors at Target. Lisa was my first friend here. The day we moved into Target, she was the one who reached out to us – as I struggled with Emily and Grace and six large suitcases. It was raining that day, Emily was in a wheelchair and she had just had surgery to place the line. I don’t know how I ever managed.

I know how difficult it was for them to visit. We all live with the fear. I hope they know how much it meant to us. I was looking out the front atrium window and saw Ann and Jace boarding the shuttle to the airport this evening and I wanted so much for that to be us; as I silently waived goodbye to them. Thanks Jace for the Mardi Gras box and Ann, you went above and beyond.

More chemo today. Another nausea medicine. TPN or liquid nutrition starting tonight. Looking forward to Catherine, Briana, and Dave’s visit this weekend. Steve went home Tuesday morning to be with the girls. I am camping out here at the hospital so that I don’t have to leave her alone. They have parent showers down the hall and also a washer and dryer. It felt a little normal to do a load of wash today.

We were lucky not to have to evacuate the other night but we heard that Ronald McDonald House all had to huddle to a safe room. The Grizzlie House all huddled in the basement – which I heard was quite an experience! Many areas in and around Memphis, did not fare so well.

As always, please continue to pray; that Emily’s spirits are lifted; that the nausea gets under control; that the chemo is seeking and destroying the cancer cells; that those traveling here tomorrow have a safe trip. God Bless St. Jude.


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Tuesday, 2/5/08
Today was not much better. Emily is barfing buckets. They now think she may be having morphine withdrawal so she is back on a higher dose and will be weaned off. She has four major anti-nausea meds and today, they gave her a patch to wear behind her ear. She is already down 12 pounds. She wants to try to eat but nothing is staying down. Today, I called Sardo's and Santo is sending some 'dipping' sauce with cousin Briana on Friday. It will stay frozen so that it will be fresh. At least she has something to look forward to.

The weather her in Memphis is terrible. The sirens are going off downtown and several tornados have already hit in the area. The nurse just came and told us that we might be evacuating to another part of the hospital. I hope not. It was in the 70's here today and once this passes, it will be in the 20's or 30's.

We are really missing home - especially Catherine and Grace. The days are long - very long!

Please pray for immediate relief of nausea and above all else, that this chemo is killing the beast!

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Monday, 2/4/08
My update tonight was going to be how I feel like we are in hell. Today was not a good day. Then, salvation came in the form of this email:


Could you please forward this email to Emily's family. Thank you

Hi, my name is Nancy Rutland. My brother Bud Rutland had his bone morrow transplant around the same time as Emily and they talked on line. My daughter Liz Spitzer is a friend of Emily's from SPHS. On Tuesday Feb. 12th we are having a blood and bone marrow drive at Rutland NE Storage (30th Ave and 9th Street) in the parking lot, from 11:00 - 2:00pm. We will also have some food and music in the parking lot. Usually it cost $70 for a bone morrow test, but it will be free on that day. It is an easy test, a cheek swab only. We decided there is no better way to honor Bud on the 5 year anniversary of his business. Please help us spread the word. I know from Bud's experience how important this is, as we were unable to use family members. Please know that ya'll are in my prayers. Nancy Rutland


PLEASE MAKE EVERY EFFORT TO COME TO THIS DRIVE. NOT ONLY DO WE NEED A MATCH FOR EMILY BUT THERE ARE THOUSANDS JUST LIKE HER, HOPING AND PRAYING FOR A MATCH. FEEL FREE TO COPY AND PASTE THIS INFORMATION AND YES, FORWARD!!!

Tonight, please keep Emily in your prayers; for relief of pain, nausea, fatigue, and for comfort.




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Friday, 2/1/09
Each day is more real...it's not just a slap in the face any more but more like a one/two punch. Emily is already feeling the side effects of the chemo. She's miserable. She wants to go home. Most of all, she wants Sardo's Pizza and Rita's Italian Ice (Mango). She wants to sleep in her own bed and cuddle with Grace and Kitty in Grace's bed as they all watch the taped 'Days of Our Lives' episode for the day. She wants to hang out with Jamie & Katelin and watch movie after movie. She wants to bake chocolate chip cookies and brownies, like the girls do just about every Friday night.

I finally was able to sleep through the night after all these years. I was really believing that this was behind her. More than anything, I wanted Emily to never have another day where she felt bad. How can she go through this again?

We moved our things over to Ronald McDonald House this afternoon. The address is 535 Alabama Ave, Memphis, TN 38105. Room #19. The telephone number is 901-312-7419.

We are all feeling a little sad right now. Grace's teacher called today because Grace was having a hard time - crying real tears. It broke our hearts. We would give anything to wrap our arms around our Gracie Girl! We heard that Catherine is taking very good care of her and is a great second Mom to her. A special THANKS to Briana and Dave for the sacrifices they have made to make sure the girls are looked after this week.

Please pray for Emily; that her pain gets under control; for comfort; for strength; and for all that she will need in the coming days.

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Wednesday 1/30/08
Anesthesia wouldn't clear Emily for surgery because of her compromised airway. Several of the doctors consulted and they decided to place a PIC line instead. At least the issue of additional scarring is delayed for awhile. Her arm is a little sore but it should be easier to bathe etc. Emily had an MRI of the brain, neck, and head. It confirmed that the condition doesn't appear to be tumor but rather infection in nature. The good news is that there are no cancer cells in her spinal fluid or brain! They went ahead and injected a chemo cocktail directly into her spine as a preventative though. She tolerated it fairly well. The day was long and later this afternoon, the doctor came in with the protocol and consent forms. She went over them and told Emily that she would come back tomorrow but Emily; in typical Emily style, wanted to "Just Do It". She signed the consents and chemo started tonight. Personally, I felt like I had to sleep on it first. Emily forced herself to try to eat and she even took a walk around the floor. She is out of isolation now but still inpatient. She knows what she needs to do to fight this. It is so difficult for me because all these years - six and one half - more than a third of her life - I had the final say in decisions. She is 18 now and I am legally out of the picture. I couldn't be more proud of how she is dealing with this. My "Little Woman" IS, the strongest, bravest, most courageous person I know! Always in the first seat on the roller coaster. As she put it; "A week ago I was sweating my AP Calculus".

These next couple of weeks are important. She needs to get into remission. I am asking that you are vigilant in praying for God's blessings on her.

In the meantime, we look forward to seeing Catherine and Grace next week.

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Tuesday 1/29/08
It was stormy here today as a major cold front pushed through. I couldn't help but think what a miracle it was that we got up here yesterday. Today was rough. Reality slapped us all right in the face. There were waves of tears in between scans and a bone marrow biopsy. The doctor came in this evening to tell us that the biopsy confirmed the relapse but I have to believe that the word 'early' in front of relapse, when it came out of her mouth, has to be a plus. In the meantime, the latest scans showed that the infection has improved and that is most likely not tumor, associated with the leukemia. Some of the drugs have been switched around as they continue to rule out viral, bacterial, and fungii. She is covered in rash from head to toe, presumably from one of the medications. Tomorrow, she'll have another MRI and then she'll go to surgery to place a central line - something she hates with a passion. The scars they have left have always been a constant reminder. The plan is to do a spinal tap while she's under and at the same time, administer a cocktail of three different chemos directly into her spine. Please pray that the fluid is clear of any cancer.

Emily needs your prayers for strength to face this new challenge. I just keep praying "Give us this day, our daily bread". I just ask for what it will take to sustain us one day at a time.

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Monday, January 28, 2008

We appreciate all the support we have received over these past few days. Our hearts are broken for Emily. There are no words for the pain that all of us are feeling.

Leaving was incredibly painful. We are so very grateful to Pilot Gas for providing the jet. The pilots were wonderful. My three sisters flew with us and all of them were needed to make Emily comfortable. Steve and I felt a sense of relief once we arrived. Emily was put on morphine and fluids. We met with several doctors and it was decided that she would have an MRI in the morning. They are hoping to get a better understanding of the infection. She will also have a bone marrow biopsy tomorrow and then we hope to know more. The doctors believe that there are 'options', although nothing will be easy. We expect nothing less than a brutal attack on this cancer. The thought of it is terrifying. This is the price of HOPE.

Please pray for Emily to tolerate the sedation tomorrow; for improved strength and decreased pain; and for comfort in dealing with fear and sadness. Please pray for Catherine and Grace, who we had to leave in Florida and who are being cared for by our loving families, and for Matt who has to deal with this being so far away from family.

We have a lot of decisions to make. None will come easy.

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Saturday, January 26, 2008
After multiple doctor visits and several days with a sore throat, an abcess ruptured spreading a massive infection throughout Emily's head and neck. Blood counts were low and a bone marrow biopsy revealed that Emily's cancer has returned.


We are completely devastated. Emily is in the process of being stabilized so that we can fly her to St. Jude. A corporate jet owned by Pilot Petroleum out of Knoxville, has graciously offered to fly us there. Words can not express how grateful we are.

If you want to come by All Children's for a brief visit, you are welcome. She wants to see everyone before we leave Monday morning.

I ask that you keep her in your prayers. For immediate relief of pain and infection; for strength to make the journey; for all that it will take to face this monster yet a third time. Please pray for Catherine, Grace and Matt. We are thanking God for our wonderful families who came on a moment's notice; and for so many special friends and neighbors.

Monday, December 31, 2007 4:17 PM EST

This morning, the girls were all hanging out in my bedroom, watching TV, and Emily remarked that "it hasn't been that bad of a year." It's so nice that she is able to say this. Actually, it's been a great year!

The trip to Memphis went well. The big news came a few days before Christmas. St. Jude contacted us to tell us that Emily's long awaited "T-cells", had finally taken the jump from 270 to 380. This is not only a milestone but also means that she is taking 13 less pills each day! While in Memphis, Emily received more vaccines as well as a flu shot. The highlight of the trip was seeing the new Chili's Patient Care Center. The bone marrow transplant unit will move into the building sometime in the Spring. Each patient room is twice the size and fully equipped with TV, DVD, Videogames and even Wii! The parent rooms are also bigger and will have a complete bathroom. This is fantastic. I think we have eaten at Chili's several times since then. THANK YOU Chili's for such an incredible gift.

Christmas snuck up on us. Luckily, we did most of our shopping at St. Jude. Emily's design was on table cloths, table runners, napkins, plates, bowls, serving dishes, ornaments, cards and bulbs. While watching Rachel Ray one afternoon, Emily noticed that it was even on 'Choxie' Chocolate which Marlo Thomas was promoting on the show!
We had decorated the house prior to our trip and I'm so glad we did. I took a substitute position in Grace's old classroom. I worked everyday until the break. Teaching a Special Ed kindergarten class is very humbling! I really did enjoy it even though they wore me out. There are a couple of kids I am really going to miss. Say a prayer that Mrs. Palmer has a speedy recovery.

Personally, I got through Christmas by deciding I wasn't going to do what I didn't feel like doing. The girls enjoyed the wad of cash in lieu of presents. With all the clearance sales, their purchasing power has probably doubled; maybe even tripled! Grace celebrated her 15th birthday on 12/28. She was all decked out in High School Musical and we went to see "Enchanted". It's a must see if you haven't already. I certainly was expecting it to be what it was. Afterwards, it was dinner at Chili's. Tomorrow is Daddy's birthday so we'll get a HSM cake for both to share! Grace does better when you give it to her in stages. Her birthday has been everyday since 12/28! Emily says she hears they are even having fireworks for Daddy tonight - right around midnight (lol).

To close 2007, Emily received her letter of acceptance to Duke University. I don't think anyone has worked as hard as she has to get here. So many times, she felt like her dreams were slipping away yet she kept at it. Parents of children who have gone through this can vouch for what these kids have to overcome. A special THANKS to all of you who wrote letters supporting Emily's application. Here is the letter her "Poppie" wrote.


I am Emily’s maternal grandfather, residing in the same geographic area, and blessed to enjoy a continuous family relationship with her. She has always been a bright, caring and outgoing human being from the outset. She has been the catalyst in her family, taking on responsibilities at an early age, by providing extraordinary love and attention to her younger, autistic, mentally handicapped sibling. I’ve seen Emily display this maturity and ability to relate in her formative years to school venues where she has been recognized by her teachers and administration for her work with handicapped children.

Emily’s life and death test came at an early age, 12. She was diagnosed with leukemia, her personal “9/11.” Instead of plunging into a personal abyss of despair and hopelessness, she displayed her determination to overcome this disease, and by so doing, provide hope and support to others who were so afflicted. Her strong character and fervor to learn all she could about this disease amazed all , including her physicians and care givers. Emily is not a quitter, but rather a beacon to those who needed a role model. Her accomplishments both academically and personal will be attested to by others, privileged like myself to affirm Emily’s application to Duke.

No, the past several years have not been kind to Em, as I call her. In my 70 years, I could not have had a more qualified instructor to show me how age doesn’t matter, in providing an example of the ability of the human spirit to overcome adversity, tragedy and soar to new heights as a result of being tested. Emily has been, and continues to be my mentor in this area. Service, commitment, courage, collegiality, determination, intelligence, leadership and humility have been her majors, especially over the past six years.

Duke should be privileged that Emily has chosen to apply to this prestigious institution of higher learning. It is only fitting that Emily’s foundation, character and experience attract her to Duke. I can only hope that Duke is so inclined to accept her."


I know Catherine will probably want to update with the more entertaining version of events. Right now, the Blue Devil ornament sits next to the Gator ornament on the tree. It has truly been a wonderful Christmas Season. We have so very much to be thankful for. God Bless and please continue praying for all those who suffer.

HAPPY NEW YEAR!

Sunday, December 2, 2007 6:04 PM CST

Hey guys!

Well, I started talking about updating my caringbridge site and all of a sudden Catherine yells "I'll do it!" I promise to update when we get back from Memphis...

Love, Emily







Hey Ya'll!

Sorry there hasn't been an update a while! A lot has been going on with school, Emily's college applications, and the holiday season coming around.
For Thanksgiving Mom, Emily, Grace, and I headed up to visit Aunt Joann and Uncle Mark in Knoxville, TN. Dad stayed behind to share Thanksgiving with Grammy Lester, Aunt Alanna, and the rest of the Parmelee family. In TN we met up with our cousin Celeste from Texas, Matt came down from NYC, our cousin Stephanie and her husband Dan (recently back form a 14 month tour in Iraq) flew down form Syracuse, Dan's family the Walters came up from St. Pete, and Mark's kids Asa and Ashley along with his mom Gert came too. Nana and Poppy had already been up there from three weeks before with "The Izzer", their toy poodle. It was a six day trip filled with fun, family, and not to mention a great Thanksgiving dinner, courtesy of Mark. Mark also made a great day after Thanksgiving dinner/ Mark's birthday dinner. We pretty much had good cooking the whole time, and I'm a picky eater so that really says something. No offense to anyone, but the absolute best part for me was getting to see Matt, and I think Emily and mom would agree too. Emily and I haven't seen Matt since July 2006 and mom only saw him on her trip to NY this summer. He looked great and spent most of his time with Emily and me. We did get a couple good pictures of the four kids to send out, but we'll see if we ever get around to it... Well now that Thanksgiving break is over we have four more weeks (one down already!) until CHRISTMAS BREAK! I really can't wait! We have already put up the tree and started decorating the outside of the house.
Now for an update on Emily's college status. She has already applied to three universities as well as a number of applications for more scholarships. She's looking at a few out of state schools so hopefully she will win some more scholarships. As of now she's a semi-finalist in the Barnes Scholarship offered by the St. Petersburg Times, so keep your fingers crossed.
Finally for the St. Jude's update. Emily has her artwork displayed on a number of items from St. Jude so if your interested in helping the cause and getting some cute Holiday related household items check out their website. Mom and Emily head up to Memphis again this Thursday and come home Saturday, so say a little prayer that all goes well with that.
That's all for now, but I'll try to be better about updating.

Love,
Catherine

Thursday, October 18, 2007 7:11 PM CDT

Hey guys!
Guess Who?
First things first... NO SCHOOL TOMORROW!
Thank goodness too, because we are all running on empty. It's been a busy last few weeks with school and extra-curricular activities positively slamming us.
Emily celebrated her 18th birthday on Sunday. I still can't believe that she's technically an adult... crazzyyyyyy! We really didn't do too much to celebrate the occasion. Emily went out with some friends on Friday night and we went out to dinner on Saturday. On Sunday a few friends stopped by the house and we had cake. Emily really didn't want to/ couldn't do too much to celebrate because she had a lot of homework. For me the highlight of the weekend was presenting Emily with her present. First I gave her the most fitting card I've ever found; the front had a picture of this little girl saying "Today's all about you...", and the inside said "and I don't like it. Happy Birthday anyway." haha
When my mom and I saw it we thought it was absotively posilutely perfect. lol No, I'm not a total cheap-skate, I did give her a gift too. Emily had mentioned wanting to get her ears double-pierced so I decided on earrings. I've been wanting pearls so what better way is there to get them than to buy them for your sister? haha
It didn't stop there! My sister deserves the best. These earring weren't just pearls, they also had 0.02 kt of diamond set with them... haha. You can't really see the diamond from far away, but I know that it's there, and I can say that I gave her 'diamond' earrings so that's really what counts, right? Or is it the thought? :)

Well school is still school, and that's basically our lives right now.
Guess that's all for today!
Thanks for reading if you made it down this far before being too disgusted by my poor grammar and sentence structure.

Love,
Catherine



P.S.

Check out Emily in the St. Jude Children's Research Hospital Hope Catalog!
Holiday Gifts

Saturday, October 6, 2007 9:21 PM CDT

I'm backkkkkkk!
Thought you all might want another update, so here goes! It will be short and sweet…
School is still raging on with so much work! Emily and I get home from school and pretty much do homework all night, although it’s in front of the TV, but still.....haha
Emily and I were both recently invited to apply for NHS and filled out our applications, so keep your fingers crossed that we'll get in. Grace is still plugging away at Largo Middle. In addition she is participating in Horses for Handicapped and Special Olympics bowling. She brought home a second place bowling ribbon last week! Mom subbed in Grace’s class on Thursday and Friday and came home giggling everyday about Grace flirting with a boy. I really want to meet this young man... haha.
Today Emily, our friend Jamie, and I spent the afternoon volunteering at Pumpkin Palooza, an event held by the Women’s Club of St. Petersburg. I was in charge of painting hair and Emily was the face painter. We both learned how particular little kids can be about their painted appearances. Mom, however, assured us that we were just as bad at that age.
After the festival we went to Nana’s for dinner. Poppy is running a men’s retreat at his church so we got pizza and kept Nana entertained. After dinner we turned on the radio and tried to show Nana Grace's dance moves. Emily and I did a crazy dance show. Thankfully no one in the room had a video camera, otherwise I think my face would be permanently red. However our dance spectacle did produce a new phrase from Grace, “You’re so annoying Kitty!” We were so surprised to hear that and had a long laugh over it.
Emily is busy writing her college admissions essays. I’ve probably read five drafts of the same admissions essay, so UF better be satisfied with it... haha.
Since the last update Emily made another voyage up to St. Jude's. Her T-cells are still not where they should be, but didn't go down either. As mom likes to put it, Emily is still 100e, so overall it was an OK visit.
Well, that’s all for now because I need to go shower and get the paint off of my face!

Love,
Catherine

Saturday, September 22, 2007

********MONDAY, SEPTEMBER 24, CHILI'S RESTAURANTS WILL DONATE 100 PERCENT OF THEIR PROFITS TO ST. JUDE. PLEASE, IF YOU EAT OUT AT ALL ON MONDAY, MAKE IT CHILI'S! THEY ARE A VERY GENEROUS CORPORATE SPONSOR OF ST. JUDE***********



Also, I'd like to personally THANK Body Dynamics in South Pasadena for the St. Jude Fundraiser they did today. Theresa, all of your wonderful staff and patrons, we appreciate your support. St. Jude is able to do what they do - save lives - because of people like you.

We returned from St. Jude last night. This trip was very difficult for lots of reasons. "Our GOD is an AWESOME GOD". We are so very thankful for all the gifts he has given us these past few days - namely that Emily's counts have recovered. We are so very, very, blessed. Please, continue praying for all who suffer.


Friday, September 7, 2007
Hey Guys!
Okay, there is good news and bad news...
Good news first!
THERE’S FINALLY A NEW UPDATE!
Now the bad news...
Catherine is updating!
HAHA, sorry but when I checked today and saw how long it has been since the last update, I decided to put my own two cents in for the first time. (on the site... :]) I do it in real life ALL THE TIME!

Well, we finished out the summer! Since the last update nothing major has happened. Mom and Dad took a weekend “get-away” trip to New York City to visit Matt. The best part was that they actually trusted us and left Emily, Grace, and me home alone. It did take a lot of convincing though. Sometimes I think they forget that Emily is going to be 18 in October! While they were away we had a lot if visits from Nana and a ton of check-up calls from the folks, Nana, and countless neighbors. We even got cookies and pizza sent over from our 'neighborhood grandma’, Mrs. Barber. Since we cleaned up the "party mess" before they got home, (just kidding!); we think they might actually leave us home again. Plus, they were amazed that we hadn’t strangled each other. Really, we just hung out as couch potatoes the whole time.
School started back on August 21. Grace is in eighth grade at Largo Middle. She’s back with her amazing teachers, Ms. Hoch and Ms. Whittington for her last year of middle school. I’m back at St. Pete High as a junior. I’m telling you, this must be the year they turn up the heat. Just this weekend I have to do three projects! Emily is going full-time to Seminole high and she’s managing to take a few classes online. Talk about an over-achiever... lol j/k. Besides, if she didn’t work so hard I’d have nobody to explain my calculus homework to me!

We’ve barely been three weeks back in school, and already a cold is running rampant through the house. Emily and I have each already missed a day of class.
Hard to believe it but Emily is going to be 18 in October! We ALL know what that means... when she leaves for college I get her room!!! Aren’t we just the perfect example of sisterly love? Emily is looking at colleges and starting her applications. Everyone keep your fingers crossed she’ll pick the one that’s farthest away... (just kidding again...) It will be so WEIRD to be stuck in the house with just Mom, Dad, and Grace. I mean there would be nobody to blame stuff on!
A few weeks before school started Emily took her driver’s license test and you’ll never believe this, she actually PASSED! Apparently these days it is completely acceptable to run over pedestrians and then floor it out of there!! Another joke... it was only one pedestrian! Just kidding! Either way, our parents have still not gotten her that lime green volkswagon bug they promised her during transplant... like that will ever happen! lol Here’s more driving news. I am eligible to get my license in November, so all you folks on the road better enjoy the peace while you still can!
At this point I’d like to ask you all to keep the following families in your prayers especially around this time of the year;
Zipter Family, Dalene Family, Dunnigan Family, Ceraolo Family, and Huff family.

My also insists that I post about the status of Emily's counts. All I know is that the doctors are still looking for her T-cells to be higher. Hopefully this will happen soon.

Thanks for your continued prayers and support and thanks for checking in on us!

Love,
Catherine

Tuesday, July 10, 2007 8:35 PM CDT

Pinellas County Schools Article Page 7

St. Petersburg Times Article


Last time I checked the calendar, it was May 1! I am not really sure where we left off but I have to believe, that this is a good thing! School's been out since May 18. Emily spent the last few weeks of the school year studying for finals, AP exams, and the SAT. She was also a guest speaker at a few Relay for Life venues. I have heard her speak several times over the years and have probably "gotten used to it." For some reason though, during her last speaking engagement, I nearly lost it. I don't know if it was the white dove that she was releasing or the details she added to her story. She remained poised and composed even through all of the commotion when someone fainted in the front row. The most fun (and I'm sure she'll agree), was speaking to a kindergarten class at 74th Street Elementary in St. Petersburg. The school had participated in the Leukemia and Lymphoma Society's "Pennies for Patients" campaign and this class had won, having collected the most money. Emily's stop to say thanks turned into a question and answer session. Emily couldn't help but giggle when one of the children asked for her phone number! She did such a great job explaining the illness and especially the mask. The mask was their primary interest. I only wish we had brought one for each of them. The school did a great job fundraising. They far exceeded their goal! This was especially awesome because 74th Street is probably similar to an "inner city" school. These kids gave from the heart! A big Thanks to Katy Foley for facilitating the drive.

We decided to make Memphis and St. Jude a family trip since school was out. We left May 30 for the two day drive. I can assure you that there is absolutely nothing in northern Mississippi. How do I know? Of course that's where Grace decided she had to go to the bathroom. We kept trying to distract her and luckily, she could hold it until we happened on what was probably the only gas station on new I-22. Although long, the drive took us off the beaten path. We saw the rolling farm country of Alabama and the beauty of Mississippi and rural Florida. We were in Memphis for a long weekend since Emily's appointments were scheduled on both Friday and Monday. In a way, it was too long. I like getting in and out and this time it just seemed like we were there an eternity. The only conselation was that we were there for the annual clearance sale at the gift shop. We always try to support St. Jude and boy did we ever. I had to repack just to get all the purchases into the car. Emily's appointments went well. Her T-cell count did go down again but Dr. Barfield said that he thinks her thymus gland, which produces T-cells, is functioning as an adult's rather than a child's. Apparently, it slows down in production as you get older. Overall, he was pleased with how she was doing. The most important test - the chimerism - was still 100 percent donor cells. I have to admit, I was feeling pretty nervous waiting for these results. We finally saw the endocrinologist and luckily, he had all good things to say. An evaluation and scans by physical therapy showed improving avascular necrosis and increased strengthening. We don't have to return until 9/10. Since the t-cells were low, the doctor advised against swimming in lakes, rivers, oceans, and streams. The woods were probably not a good idea either so we had to modify our vacation plans. Tubing and rafting were out.

We left Memphis and headed to Knoxville for a couple of days at the Hazelwood's. Thanks again for your hospitality guys! It was the most relaxing few days ever. My favorite part of the entire trip was walking the boulevard which runs along the TN River, overlooking UT. It was beautiful and so was the weather. At one point, the girls were all very quiet and I went upstairs to find all of them tucked into bed with their cousin Parker, watching TV in the middle of the day. It brought back so many memories of when they were little. Missing was cousin Victoria. She was always part of 'the girls'. My sister, Joann and I were pregnant at the same time along with Aunt Susan. Susan delivered baby Victoria on 8/28. Joann and I actually had the same due dates but since Grace was a repeat C-section, (not to mention our tax deduction), she was born first, 12/28. Parker followed a week later.

We were a little worried about Mark losing his membership at the clubhouse pool. Grace decided she wanted her wet suit off NOW! I won't even go into details! From Knoxville, we headed down to Chattanooga and spent the night so that we could see our friend Ms. Anna. She and her husband Bill had lived next door to us at our old house before they moved up there. Bill passed away a few years ago and Ms. Anna is all by herself. She was very happy to see us and it was just like old times. She and Bill were like grandparents to the kids. We went into town for "supper" and I was amazed that my meal of pot roast was only something like five dollars! It was a family owned restaurant serving up southern home cooking. We meandered through the mountains of North Georgia with all of us getting car sick! Lots of twists and turns! We arrived at our hotel which we booked from the internet only to be extremely dissappointed. After inspecting two rooms, I said no way. I would rather sleep in the car. The people were pretty understanding when I explained Emily's situation and that we needed certain ventilation/air conditioning requirements etc. I don't know what I was saying. I was just trying to get out of it graciously, without forfeiting a deposit, and without coming out and saying the place was a dump. We sat in the parking lot and used their wireless signal to book a different hotel. Because of a Shriner's Convention in the area, the only rooms available were more than an hour away. It was getting late so we decided to just take a room. Glad we did because it was a fairly new Embassy Suites which believe it or not, turned out to be cheaper than the original hotel! We got our money's worth at breakfast. We drove into Atlanta and decided to go to Stone Mountain. When the girls were little, we actually hiked up it and I carried Grace. It was freezing cold that day but when we got to the top, us girls felt like we were on top of the world. I guess we were wanting some of the nostalgia but it wasn't meant to be. Atlanta was HOT, HOT, HOT. Emily can not be in the sun and none of us could really take the heat. After a half hour or so, we were done. After 12 days on the road, we headed home.

As soon as we got home, Emily found out that the local gym offered free student memberships through August 14. Both girls signed up and Emily went almost everyday. She's participated in a few classes including a Step class and a Zumba class - which is sort of like dance and exercise to a latin beat. Me, I road the bike and watched her through the glass. She has been very busy the past two weeks so she hasn't gone back but hopefully, we will be back there on Friday. We actually saw two of the oncology nurses there - who looked shocked to see her working out!

The BIG news of the summer was our trip to Chicago. We couldn't work it out for all of us to go so Emily and I flew to Chicago where she received her Discover Card Tribute Award. It was incredible! She was so excited the night before that she couldn't sleep. We had an early morning flight and even arrived a few minutes early into O'Hare. We were greeted with a big orange sign by the sweetest girl ever from Discover. A stretch limo was waiting to take us to the hotel. The hotel was fabulous and lunch was ready for us downstairs. Several other winners had already arrived. After lunch, Emily was whisked away to do makeup and hair for the photo shoot and the parents were taken on a very nice ride up to Long Grove which is a historic little town with lots of ecclectic little shops. My favorites were Tuscany (of course) and Ireland. Everything was pretty expensive so there weren't any souveniers. We had a great driver who came back to pick us up early - good thing because the skies opened up. It poured. Wish FL had that rain. It turns out that all the rain was part of a massive storm system which literally brought air traffic to a standstill. A couple of the winners were late getting in and thus had to miss out on several outings
. One of the winners, Eric, had emigrated from Africa a few years ago. His Mom did not speak English and he was trying to get there from Denver. It was quite an ordeal for them. Many mishaps, cancelled flights etc. I guess he and his mother had a breakdown in the Minneapolis airport and a good samaritin, "Jack", took the time to come over and see what was wrong. It turns out Jack worked for Morgan Stanley, who up until July 1 was part of Discover Card. Jack got the ball rolling and because of him, they made it to the hotel just after midnight. Jack came to the ceremony the next day - a hero I might add! The world needs more guys like Jack.

We had a great dinner at the hotel and the nine girls waited up for the lone boy, Eric, to arrive. They made signs etc. and greeted a very tired Eric and his Mom when they arrived at the hotel after midnight. All of the girls gave him hugs and you had to have seen the look on his face. He was simply overwhelmed! The next morning, we headed to Discover Card headquarters for the ceremony. It was unbelievable. I heard there were 1,000 employees and I heard the number 3,500. I have no idea. I just know we were in this massive room with screens all over showing all the winners. When it came time to announce each winner, they played a three minute video clip they had put together. When Emily's played, tears began streaming down my face. There were pictures of her when she was really, really sick. I must have forgotten how bad she looked. I just kept thinking about where she was twelve months ago. You have to believe in miracles. Emily is living proof. I was so glad to see Catherine in so many of the pictures because you absolutely can't tell Emily's story without including Catherine. This was truly a moment in time that I/we will never, never forget. It ranks right up there with those unforgettable moments in my life - like giving birth (4x). Each of the executives at Discover Card did a wonderful job introducing the winners. They were so sincere and you could tell that they had taken the time to learn about these amazing kids. I tried to savor ever moment of Emily's introduction but the only words I came away with were "Resilient" and "Tenacious". I remember one of Emily's soccer coaches used the word tenacious to describe her on the field. That's how she got the nickname "Bull-dog". It was hard saying good-bye to all the families. These were ten truly great individuals. Three of them were cancer survivors. You would be in awe to know how much they each have accomplished in the face of adversity. Inpiring is and understatement. The most touching thing was the bond they all formed. You would have thought they had known each other all their lives. I don't ever want to hear an excuse from someone as to why they can't do something. Just do it!

Getting to Chicago was a breeze... getting home was a little bumpy (literally in the air too). We arrived at a packed airport which was trying to overcome hundreds of cancelled flights. Many people had actually spent the night there. All I could think of was germs, germs, and more germs. The mask was definately a must. When we got there I saw that there was a flight boarding for Tampa so we ran to try get on stand by. Not a chance! Oh well, we tried. Every time we looked at the board, the time of our flight kept changing. I was starting to get nervous so I got in a rather long customer service line. I knew there was another flight leaving sooner on a different airline. I was so afraid of our flight being cancelled and there was no way we were sleeping in the airport. I cut the line out of necessity and some very nice and understanding ladies checked every flight for me to try to get us on. Nothing. They did notice another flight to Tampa that night had been added and they went ahead and put us on stand by on this flight, in the event that our original flight got cancelled. At least we would have a plan B. Luckily we didn't need it though. Our original flight took off late but got us home safe and sound. We had the most fantastic 36 hours. THANK YOU DISCOVER CARD and all your great employees who made this possible.

Emily was home for a few days when cousin Briana invited her and Catherine over. They spent a few nights over there and then returned home for a couple of nights before heading off to Orlando with Briana, Dave, and their other cousins, Keeley and Ashlynn. It was way too HOT for Disney but they did take in some restaurants... Planet Hollywood, Rainforest Cafe, & Margaritaville. They also did Disney Quest which is all indoors. I am not really sure what it is... a multi-story arcade? I think there was some pool-hopping at a five star hotel but I'll never tell! They had a great time. Dave and Briana are young and adventurous and will surely make great parents one day (soon???). They didn't come home after Orlando. They went back to Dave and Briana's. Catherine finally came home yesterday because she volunteers everyday at a school for handicapped children. She actually misses it when she doesn't go. Emily went to Bush Gardens tonight - Dr. Barfield gave her the green light for roller coasters and they are open to 11. She has to go when the sun goes down. Tonight they are seeing Harry Potter at midnight and Emily better come home soon! I think she is making up for all the things she missed out on.

Thus, the lack of updates!
Believe in miracles and PRAISE GOD for our abundant blessings! Continue to PRAY for all our friends both at St. Jude and here at All Children's.

Check the Journal History for pictures from Discover Card. We were having some camera problems on the trip and are still waiting on more pictures from friends.

Tuesday, July 3, 2007 8:33 PM CDT

Monday, May 7, 2007 5:36 PM CDT

Update a few times and now everyone expects me to take over. lol So much has been going on lately. Relay for Life was April 13th/14th. The event was magnificent! I had an especially fun time camping out. Thank you to The Muley Family, Briana & Dave, The Vaughan Family, Terry & Kathy, The Parmelee Family, Alanna, Keeley, Ashlynn, & Chance, The Hay Family, Cece & Friends, The Ceraolo Family, Ian, Julia The Duncan Family, Stephanie, The Foleys, The Bracics, Katelin, Jamie, Alix, Kaley, Nanna & Poppy, Our neighbor, Jane, Vicky, Andrew, Kanyon, Alix, and everyone who supported our team. A special THANKS to Winn-Dixie in Seminole, Angelino's Restaurant on Walsingham, Crispers on West Bay Dr, and Albertson's on Walsingham. Unfortunately, we didn't reach our goal but we were close! Our team also won the coveted spirit award. Go Chemo Crew!

The following evening was the St. Petersburg High School Prom. It was great to see all my old friends for the first time in months. We ate dinner at The Columbia Restaurant and enjoyed a windy evening at the Pier. If you want to see pictures, check out the slide show.
I actually ended up going to two proms. The next weekend was Seminole High School’s “Fire and Ice” gala. I guess I am making up for lost times. :] Although I didn’t know many people at the Seminole Prom, I still had a lot of fun. I went with my friends Jamie & Maureen. We are all crazy together so it was entertaining!

Lately, I have been extremely busy with school work. On Saturday I took the SAT and today was the United States Government & Politics AP Exam. Next week is the AP Biology Exam and semester exams for all six classes. Again I face the annoying dilemma of no exemptions. Not fun!...but this is a county rule due to 10 or more absences. In school we are busy finishing out the grading period with lots of last minute tests and assignments. I really want a homework break so I can go see Spider Man 3. I might sneak it in tomorrow afternoon.

In addition, our family received some very exciting news. It turns out that I am one of ten national winners for the Discover Card Scholarship that I applied for several months ago! I am so excited! This opens up so many new doors for college even pertaining to housing, study abroad, medical school, etc. There is even an award ceremony in Chicago this summer. I will continue to update as we receive more details. The announcement will probably be posted online sometime this month.

Also, St. Jude called us earlier this week and wants me to fly up on Friday. Don’t worry!… it’s not for medical reasons. I guess they are interested in some artwork I did last summer while I was in the hospital. They didn’t really explain exactly what they were using it for but from what I understand, it is some sort of book/collaboration and they need me to come up and take photos. Needless to say, we will be leaving on Friday morning and staying for the afternoon. Hopefully we will come back that night or on Saturday morning.

In other news, all pertinent medical issues remain stable. lol We visited Dr. B last week and the T-cells are down again. Go Figure! However, I refuse to become discouraged. I am making my own plans for the summer whether my Mom likes it or not. :] Lately I have been doing great. I have so much energy and I am finally getting back into shape. I can't even explain what it feels like to think of where I was at this time last year. Fortunately, I don't remember most of the events from that catatonic period but I do know that it was a nightmare for my parents. Hopefully this year they will have a much nicer anniversary without the fear and uncertainty of ICU.

Happy Summer! Keep those prayers coming!

Love, Emily

Saturday, March 31, 2007 1:10 PM CDT

Happy 1st Birthday!
That’s right… It has been one year since I received my bone marrow transplant. I would say that “time sure flies” but this has actually been the longest year of my life. Time seems to move slowly when you have a low immune system and can’t go anywhere but lately, life has been getting back to normal. This week was Spring Break and it has gone by way too fast! Catherine and I spent several nights at our cousin Briana’s house, not to mention, shopping, eating, mall, movie theatre... everything a normal teenager should be doing on their Spring Break!

On Tuesday night, our family attended the Fashion Funds the Cure Event at Saks Fifth Avenue. It was great to see all my old friends from the hospital. We haven’t hung out together since before my relapse. It almost felt like the old days at the Children’s Cancer Center. Except now everyone has hair! lol Anyway, I also made several new friends and we all had a blast walking down the runway. I guess I didn’t realize it at first, but it was actually a REAL fashion show. (runway, news cameras, models, stylists, and everything!) I was extremely nervous at first but by the time it was over I was having a lot of fun. The biggest surprise of the night was that we got to keep our outfits! Thank you to a certain benefactor for being so generous. Unfortunately, I will probably have a hard time wearing it, especially knowing how much it cost. After all, I am a Lester which means frugality is inherent. Check out the slide show if you’d like to see any pictures.

Last night I was a guest speaker at the Shorecrest Preparatory Relay for Life. We stayed long enough for the survivor lap and met several other people. I was one of the younger survivors there so they let me hold the banner when we were walking around the track. Overall, we were very impressed with the Relay. It seemed extremely family oriented and all of the campsites did a great job! Many campsites were dedicated to Garrett Staples, a former student who died a couple of years ago from osteosarcoma. He was also a patient at All Children’s and we talked with his family on occasion. I was truly touched at the school’s ability to pull together and honor one of their students. Two members of the faculty also spoke. Ironically, it was a mother and daughter who were both breast cancer survivors.

After the Relay, Catherine and I met up with our cousins again to attend their niece’s birthday party. Since the party was formal, I finally got a chance to wear a dress that I had gotten for Christmas. The party was awesome! It was a Hollywood theme with red carpet décor, a DJ, and a limo. Catherine and I were shy wall flowers at first but by the end of the night we were tearing up the dance floor and bouncing off the walls. By the time we got home, I was exhausted and went right to sleep.

School starts up again on Monday so I will probably be spending the rest of my weekend doing homework. The Relay for Life is in less than two weeks and we are so behind. Please DONATE to the American Cancer Society. Donations are tax deductible. You can even ask your friends, family, or business, to sponsor our team. This cause is extremely important to me; especially since most of the money goes to cancer research, helping patients in the most effective way possible! For more details, check out the link at the top of the page.

On a final note, all of our results from St. Jude appear to be great. My bone marrow chimerism is still 100nd my t-cells are up to 300! My EEG was finally clear and I am currently being weaned off my seizure medicine. The brain MRI was also normal. The bone scans still showed some avascular necrosis but it looked like it was improving. The Echocardiogram and EKG were both fine. The dexa scans still showed some osteoporosis but this also looks like it is improving. Unfortunately, our endocrinology appointment was rescheduled but the good news is that we don’t have to return until June 1st. We are planning to see Dr. Barbosa a few times in the interim. I want to know exactly what my t-cells are doing because when they reach that magic 450, I’m running the box of masks over with the car! lol

Wednesday, March 15, 2007 8:30 PM CDT

Well, what can I say about this week? So much has been going on!

Our weekend was busy. Friday night began with our church’s annual fish fry dinner. Opportunely, our priest Father Gary, gave the Chemo Crew special permission to sell our bracelets at the entrance. We did extremely well, moving almost all of our stock. Father Gary and the youth group were a huge help. They made several announcements throughout the night, asking people to buy a bracelet in support of the American Cancer Society. By the end of the night, we had an empty table, bringing on several new Relay recruits in the form of survivors and volunteers.

My mom and I spent Sunday at Saks 5th Avenue thanks to the Pediatric Cancer Foundation, a truly wonderful benefactor. We were treated to a day of pampering as part of their Fashion Funds the Cure Event. In addition to selecting my outfit for the upcoming fashion show, both of us received make-overs, manicures, and a ride home in a brand new Mercedes. Choosing an outfit was surprisingly overwhelming. I’ve never just been able to walk into a store and pick out whatever I wanted. It was hard to fight that invisible force that usually draws me to the clearance rack. Fortunately, with the help of some of the volunteers, I was able to find something and the accessories to go with it.

I left for St. Jude on Monday but only after finishing two semester exams at school. We had no appointments when we arrived and decided to take the trolley downtown. We ate at this great place called “Bigfoot” that our friend Jace introduced us to. The manager was extremely kind, even setting us up in the back room to avoid the crowd. Supposedly this restaurant is famous for volume. They have a 4 pound burger challenge as well as an 18 scoop ice cream dessert. Even the regular sized burgers were big so my mom and I decided to share. Afterwards, we stopped by the Peabody for a rooftop view of the city. Jace and his mom had never been so we convinced them to come too.

Tuesday was full of appointments. Since this is technically my “one year” visit, everything is being checked. We ended up spending 12 hours at the hospital with more than a dozen appointments. (Labs, Chest X-ray, Clinic, Bone Density, CT Scan, Dentist, Dexa Scan, Echocardiogram, EKG, Nutrition, Social Work, Pulmonary Function, MRI, Neurology) These are just the appointments I can remember! By the time we got back to Grizzlies House, both of us were worn out! Today was also hectic. This morning we had to be at the hospital at 6:45 for a brain MRI with contrast. Unfortunately, it ran late causing two other appointments to get rescheduled. Afterwards I was able to take a short break before my complete work-up at the eye clinic. We finished out the day with BMT clinic, more labs, and my one year bone marrow biopsy. Phew! Anyways, hopefully we have some test results back by tomorrow. For now, everything seems to be going smoothly. Hopefully we will still be able to get out of here on Friday. They already put the appointments that we missed on tomorrow’s schedule. My Mom or I will update as soon as we get some more news.

Somewhere between sitting in the glass box for my PFT and having my head padded and taped into the MRI helmet, this whole visit has hit me like an emotional bag of bricks. I couldn’t help thinking about the kids at school and how many of them are so clueless. I guess it is just because everyone looks at me as sees me getting better. They don’t see what is behind the scenes. Even though I am healthy and back at school, there is no evading the lasting impact that cancer has had on my life. Each trip to the hospital only drudges up the bad memories. After three days of being here, I just want to forget I ever had this disease and move on with my life. As many patients will tell you, this is a feat that just can’t be achieved. Once thrown into this world it consumes your existence. Every time we are here we are reminded of the suffering. Yesterday my Mom and I saw this little boy in the waiting room who had recently been diagnosed. Both of us nearly broke down as we watched him cling to his mother, begging to go home and see his daddy. His mom held back tears as she tried to reassure him that everything would be alright and he would be able to go home soon. You could tell that they were new this world biopsies, doctors, and chemotherapy. I felt the lump in my throat as memories of my own anguish flashed through my head. There is no explaining cancer and there is no explaining St. Jude until you have been here and experienced it yourself.

While waiting for the dentist, we met another precocious ten your old who was relatively new to this scene. As my Mom talked about living at Target House, she tried to explain that we didn’t move there permanently, “it was just sort of like a vacation”. We couldn’t help but chuckle when the boy replied, “yeah, a really bad vacation!.” I think that pretty much sums it up!

These are the constant reminders that prevent me from “moving on”. Knowing that I will leave here on Friday is what sets me apart from the hundreds whose fate is uncertain. For every cured patient, there is someone else waiting to take their place. This is the reality that drives me to help in any way that I can.

Please remember the Bay to Bay Race/Bone Marrow Drive this weekend!

For more information on Emily's team, check out runbaytobay.com or
www.sptimes.com/2007/03/14/Neighborhoodtimes/Runners_high_on_helpi.shtml

News Article About Joseph Grimsley

Sunday, March 4, 2007 6:14 PM CST

Emily returned to school on Thursday. She's feeling a lot better. We found out Friday that she was positive for Paraflu 3 virus. Apparently, there isn't any real treatment but it because of her weakened immune system, it will be more difficult to fight. Luckily, she didn't have any work to make up because of FCAT testing.

We had been praying for the rain to hold off and God answered our prayers. Yesterday, Emily and her "The Chemo Crew", hosted our annual garage sale to benefit the American Cancer Society. Unfortunately, I wasn't here for the event because I had to take Grace to Special Olympics. However, by everyone's account, it was a huge success! Thanks so much to everyone who helped; everyone who donated items; and everyone who came buy to purchase them. The girls moved a lot of stuff!!! Special THANKS to Jane for always being there! Martha for all your support. CeCe, Katelin, Jamie, & Alix, for answering the call for help. Thank you to Nana for providing lunch and moral support. Thank You Nurse Renee from All Children's Hospital for making the effort to come support Emily and her cause. You're the best! Thank You Uncle Jeff and Grant - for providing moral support to Steve! Emily did say that her Dad was great at the garage sale. Apparently, he did a very good job 'selling' and promoting the cause. Everyone had a good time too. Emily had made a display table with all the literature promoting RELAY FOR LIFE. She also sold many bracelets that she and some friends have been making over the past several weeks. Their motto is: "Chemo Crew Craft and Design - Curing Cancer One Bead at a Time". Yes they are!!!

Relay is 4/13 and this garage sale was a kick start for our fundraising efforts. Please, consider collecting for Emily at work or send out personal emails with a link to her site. Donations can be made online, directly to THE AMERICAN CANCER SOCIETY. Click on Emily's Relay link above. In the past, Emily and her Crew have raised thousands of dollars. This is something she is very passionate about and God has blessed her with everything it takes to pursue this passion. The thousands she has raised has literally come in the forms of nickels, dimes, and pennies. We would love to see some big corporate donations this year. Be part of the "The Chemo Crew"!

On another note - Emily learned today that she is a semi-finalist for the Discover Card Tribute Award Scholarship. A couple of months ago, she found the contest online and decided to enter by writing an essay about "a significant obstacle" she has "overcome". We are very proud an know she's a winner no matter what!

Mark your calendars for March 16, 17, & 18. It's the second annual Bay to Bay Bone Marrow Drive to be held at the YMCA on 1st Ave S & 31st Street S in St. Petersburg on 3/16 & 3/17. On 3/18, it will move to the St. Pete Pier from 8-12am. We want you to come out and register to be a bone marrow donor. We are especially looking for blacks, hispanics, and other minorities. Locally, there is a young black man, Joseph Grimsley, father of three children, who is in desperate need of a bone marrow match. We want to help him find one.

The event will also be a great way to honor our bone marrow donor, Catherine, who turns SWEET 16 on 3/18!!! Come celebrate and register!

You can also register to run on Emily's Team in the Bay to Bay Race. Go to www.runbaytobay.com to register. A portion of the race fee for all those who sign up on Emily's Team will be donated to Florida Blood Services.

Emily's one year transplant anniversary is the end of the month. Because of GOD'S AMAZING GRACE, she is here today. We have so much to be THANKFUL for. We fly to Memphis next Monday. Emily will be there all week for a complete and thorough work up. Once again, I am asking that everyone take time out to PRAY and PRAISE GOD!

PRAY for Emily's continued healing and for all those who suffer from disease.

Thank you!

Saturday, February 24, 2007 3:43 PM CST

The garage sale has been postponed. We are aiming for next weekend. Emily spent the night in the hospital. She has been sick for about ten days now. It started with a sore throat on Valentine's Day. A trip to the pediatrician ruled out strep throat but by Sunday, she was very congested. Monday morning, she saw Dr. Barbosa. He did a CT of the sinuses and chest x-ray. He also did blood cultures and labs. Everything looked okay. She just wasn't feeling any better and last night, the congestion seemed worse and she started spiking a fever. The on call doctor admitted her. She had another chest x-ray and CT scan of the sinuses. She also had more labs and blood cultures. With no central line, the IV team took over an hour to hit a vein. She is black and blue today and yes, it was very painful. They gave her IV antibiotics and this morning they told us that her sinuses are significantly impacted. They let her come home on oral antibiotics but it will be a three week course. Her fever is already down but she is very, very tired. We didn't get to sleep until 5 am. Needless to say, she was bummed about not having the garage sale. At least this gives us another week to advertise and collect more things to sell. She's also had a crew of kids making bracelets to sell. They are beautiful! Thanks so much to everyone who has been helping prepare for the garage sale. Especially Jane, Martha, Brianna, Mimi, Nanna & Poppie, CeCe, Mandy, Vicky, Katelin and the Foley Family, Jamie & Alix, and The Stevens Family.

Remember, you can join our Relay for Life Team by clicking on the link above and going to the Team Page. You can also donate directly to The American Cancer Society through this link.

Lots of kids and families are in need of prayers. Please remember them.

Wednesday, February 14, 2007 1:20 PM EST

I have sort of been holding my breath here. So many memories of last year at this time have come flooding back. On Valentine's Day '06, Emily went to ICU with E-Coli and Klebsiella infections. It IS a miracle that she survived! I was praying to God that we would get her out of All Children's and to St. Jude. Dr. Barbosa is one of those people that God put in our lives. I know with all my heart that with God's guidance, he saved her life. As she was being moved to ICU, he promised her that he would get her to St. Jude.

We were up at St. Jude last week. All the preliminary reports were good. Emily did have a physical therapy evaluation and it was noted that there is weakness in her torso and tightness on her right side. They will evaluate her again next month and we are hoping that this continues to improve. Chemo and radiation really take a toll on the body. She also had an EEG and we haven't heard the results yet. The neurologist agreed to begin weaning her off of the seizure medication. The weaning process should take a few months. He'll do this even if the EEG comes back abnormal again.

Today, I finally got the courage to email the doctor for the results of the rest of the lab work. I was hoping 'no news was good news'. Emily's chimerism is still 100 percent. This means that she is ALL Catherine!!! Her T-cells are still not within the normal range but they have increased. The doctor actually took the time to graph the last several months for us and it did show a steady and gradual increase. The red cell line is strong with her hemoglobin at 14.4 and her platelets increasing to 185.

It had snowed a couple of days before we got to Memphis and there was still some on the ground. It was quite powdery - which we didn't expect. My little Florida girl played with her California buddy, Stephanie, (who is 5), in the snow. Emily was wearing flip-flops! Brrrrrrrr!!!! Her and Stephanie had a great time making snowballs and throwing it at each other. I know people walking by thought they were crazy but for both of them, that little bit of snow was everything! Our friends Liam and Jace were also there and we were able to spend some time visiting and catching up. We even had lunch with our favorite nurse, Sarah.

The BIG news............Dr. Barfield said that Emily could go back to school part time. She wasn't able to go back to IB for just a couple of classes so she is attending Seminole High School part time. Lots of people worked to get her transferred into Seminole. We really appreciate the hoops you probably all had to literally jump through. Emily continues to take AP classes online through Florida Virtual School and two classes with the County Hospital Homebound Program. Her goal is to graduate with her class next year. In the middle of all this, she took her SAT. She wants to visit colleges this summer - things are looking up!

We are still seeking donations for our garage sale on 2/24 which will benefit the American Cancer Society. Thanks to the Ather's, Previtera's, Renfrow's, DeMuth's, and Yvonne Smith, for all your donations so far. We are recruiting team members for RELAY FOR LIFE. Follow the link above to register on our team. You can email friends and family and they can donate directly to THE AMERICAN CANCER SOCIETY online. This is very important to Emily and our family for obvious reasons.

We are also working with THE CASIE SNOW FOUNDATION, FLORIDA BLOOD SERVICES, AND THE BAY TO BAY RACE, on the second annual bone marrow/blood drive. It will be St. Patrick's Day weekend at the Mid-Town YMCA on First Avenue South and 31st Street in St. Petersburg. The Race is 3/18 and I will soon post the link to register to run on Emily's Team. Emily does this in honor of her friend, Casie Snow, who did not survive her bone marrow transplant. Casie's family continues to be involved in this cause.

Catherine and I head to Orlando on Friday for a President's Day Soccer Tournament. Hopefully we'll have some good bonding time.

We THANK GOD for all we have to celebrate! He has bestowed so many wonderful blessings on Emily. Please continue to pray for her healing and again, for all these children and families who journey with us.

Wednesday, January 24, 2007 9:27 AM CST

December flew by and January seems to be getting away from us! The visit to St. Jude went well although, the T-cells dropped again. The doctor isn't sure why but he didn't seem concerned. One explanation could be viral. Emily was given an antibiotic as a precaution because of a sinus 'drip'. She also complained of feeling a little 'dumpy'. It was lonely there - we didn't see any of the families we usually see. Hopefully, we will get on the same schedules at some point in the future. We did meet another family from this area. The Dad was on our flight home. Their journey had just begun.

We are working on lots of things right now. Emily is trying to get back to school part time. She'll continue taking two classes with Hospital Homebound and she is finishing up her online classes through Florida Virtual School. She will re-enroll with Virtual School as they are on a rolling semester. Pray this works out! There are a few glitches to overcome first.

The next few months will be very busy. Emily was contacted by ALSAC, the fundraising arm of St. Jude. She will do a radio interview with the local country station, WQYK, on March 1st. She was also contacted by the Pediatric Cancer Foundation and will be participating in their fashion show at SAKS on March 27th. With this, comes "a day of pampering" on March 11th. Emily and Catherine also attended a kick-off for the Leukemia and Lymphoma Society's "Pennies" Program. If your school is still interested in participating, please let me know.

If you live local, mark your calendar for the March 16-18. We are helping with the second annual Bay-to-Bay Bone Marrow Drive. We are looking for runners to run the race - as part of Emily's Team. The event includes a health fair at St. Pete's Midtown YMCA. This year, the drive will be focused on minority registration. Unfortunately, African-Americans, Hispanics, and Asians, find it very difficult to be matched to a donor. Emily was inspired to help with the drive because of Casie Snow, a friend and fellow patient; who passed away. Casie's family continues to work for the cause.

April 13-14 is the American Cancer Society's Relay for Life. It will be held in Seminole and it looks like this year, Seminole Middle School will be hosting the event. We are looking for team members! Even if you can't come, we can set you up with an online donation site as one of Emily's "Virtual" team members. Last year, under the leadership of Katy Foley, THE CHEMO CREW, raised over $8,000. This will be our sixth year participating and we have a most ambitious goal. Please, help us get there.

We will be hosting a garage sale here at our home on 2/24. All proceeds will go to The American Cancer Society under our team name. We are accepting "gently used" donations so time to start 'Spring Cleaning'.

In the interim, Catherine's soccer started up again. I will head to Disney with her the weekend of 2/16 for a tournament.

Emily and I will return to St. Jude on 2/4. Always, I ask that you continue to pray for Emily and for all these children and families.

Saturday, December 30, 2006

First of all, our trip to Memphis went well. We learned that Emily's long awaited T-cells had gone from 160 to 300! They are still below normal but that's okay. They are going in the right direction. It was so awesome to head into Christmas knowing this. We got to spend time with friends Liam and Jace while we were at St. Jude. Jace left to go home while we were there. He too had transplant. We went over to Ronald McDonald House for dinner with Liam. It was fun just hanging out. A Catholic High School group from Memphis had a spaghetti dinner for us. It was actually pretty good.

Emily has been the spirit of Christmas around here. She did all the shopping. We bought as many gifts as we could at the St. Jude Gift Shop. It was very important to us - for obvious reasons - that our money stayed there! We found two boxes of new Mason Jars in the garage and Emily decorated each one of them and filled them with goodies. No two jars were the same. Many were decorated with cancer ribbons. She did an excellent job! She is so creative!

Grace's birthday is 12/28 but always seems to get lost in the after Christmas hustle and bustle. Emily decided that we should celebrate it before Christmas this year so on 12/22, we celebrated Grace style! We invited two of her school friends to go see the new Charlotte's Web movie. If you haven't seen it, we highly recommend it! We had pizza and cake afterwards. The cake was THE cake of all cakes. We had Grace go online and look at the Publix cakes and she picked Little Mermaid. We splurged because she had never had a party like this nor did she ever have a themed cake. It was worth every penny. She absolutely loved it. All of us got so much enjoyment out of seeing her so excited and happy. Grace truly is our 'special' girl.

We were able to enjoy a few Christmas parties together. It was just so good to be able to see people we hadn't seen in a very long time. In fact, at one point, Emily was so overcome with emotion, it was hard for others to fight back tears. She was genuinely happy. Tears of JOY! Thanks to everyone - both friends and family - who made this Christmas so special for her and our family.

Today, Emily and Catherine were kicking around a soccer ball out front. Just seeing my girls together like this was fabulous. Afterwards, they came inside and made another infamous video. Some of their videos I'd like to destroy but this one had me rolling laughing. Emily writes the scripts and Catherine acts them out.

We'll celebrate Daddy's New Year's birthday tomorrow because we fly back to Memphis on New Year's Day. We plan to be back here on the 3rd. The girls don't go back to school until the 8th so we'll still have a few days to 'hang out'. We head into the new year with HOPE and we are ever so THANKFUL for what this past year has given us.


Always, continue to pray for Emily and all the families who we walk this walk with.

God Bless and HAPPY NEW YEAR!!!

Thursday, December 14, 2006

Emily and I had been invited to attend a Gateway Chamber of Commerce Luncheon yesterday. We were guests of The American Cancer Society. I was asked if we would say a 'few words'. I went there, fully intending to be the speaker but on the way there, Emily decided that she should talk. She quickly wrote some notes while we were driving. She did great! I was really proud of her. The Chamber graciously presented a check to The American Cancer Society afterwards. Thank You Gateway Chamber. We had a very nice lunch and all the members were very friendly.

After the lunch, we headed over to Tampa where Emily filmed a short promo for the Leukemia and Lymphoma Society's "Pasta for Pennies" campaign. It will kick off after the first of the year. I know St. Jerome's Pre-School has participated in years past and so has Ridgecrest Elementary. We would love to see more schools join. If you read this and have some connections to sign on your school, please email me.

The week has been busy. Emily has taken charge of decorating. She even added another strand of colored lights to the tree the other night. This required removing ornaments and then redecorating! What energy. I love seeing all the hand made ornaments that the children have made over the years. There is even a lock of Emily's hair from when she first lost it. I was devastated and then she made it into an ornament for the tree. The girls have been busy putting together a package to mail big brother. He won't make it home for Christmas...boo hoo!. They were very creative. They even made a list of everything in the box and wrote why it was in there. Each item was carefully thought out. Matt, you have three wonderful girls who totally love you!!!

Today, we head back to St. Jude. Once again, I ask that you pray for things to go smoothly. I don't know if it's the holidays or what but I really don't want to leave Catherine and Grace. We will be home Saturday though so it's really just tomorrow that they will be without us.

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Friday, December 08, 2006
We made it up and back in one day! Yes, it was a VERY long day! While we were sitting on the plane waiting to take off on the way home, I was having second thoughts on having done it this way. The procedure was a little rough and Emily was uncomfortable. After a quick nap, she got her 'second wind' and proceeded to finish reading one of her English novels all the way home. I wish I could have slept!

The day at St. Jude went smoothly. Emily's counts had rebounded nicely from the recent hospital admission. The other test take about a week to get back. We were happy to run into Stephanie, Shannia, and Jace. Jace will be going home to Louisianna just in time for Christmas. We also were able to visit briefly with our favorite nurse, Sarah. Please pray for Sarah's brother who is also battling.

The transplant floor is packed and unfortunately, some friends are in ICU. Please pray for all these wonderful families. You just don't know. We rode to the airport with a very young Mom. Her baby was only a couple of months old and she was all by herself. Trying to manage the baby, diaper bag, and luggage. We helped her when we got to the airport. Her baby was diagnosed via an ultrasound while she was still pregnant. She was so happy to be going home with news of shrinking tumors. I thought she was one of the bravest people I've ever met. You wonder how many would have terminated the pregnancy; knowing what they would be facing.

One of the reasons it was so important to make this a one day trip - Catherine. Catherine was nominated for the "Kids are Heroes". The awards dinner was Wednesday night over in Tampa. There is no way I wanted to miss it. Thank You God! Approximately 100 kids were recognized at the dinner. They were calling the kids up alphabetically in each age category. When they skipped Lester, we all knew Catherine was one of the winners. When they finally did call her up at the end, I'm not sure exactly how much I heard of the description of why she was a "Hero". My mind was racing and I could think of a thousand reasons why. A family friend who nominated her, wrote about Catherine's dedication to her family. She wrote about Catherine stepping up to the plate to help care for her disabled younger sister. Bathing, dressing, feeding her and getting her to her bus everyday. All this started when Catherine was only in fifth grade! She continued during the HUNDREDS of days that Emily was hospitalized. Besides the biggie, giving her bone marrow to save her older sister's life, she also helped raise thousands of dollars for the American Cancer Society's Relay for Life.

My mind went back to the countless nights that Catherine slept on the floor at the foot of Emily's bed. The tears she would hold back until she would finally explode while we were driving in the car. How she unselfishly told me to go ahead and buy Emily the movie camera for Christmas one year - even though she knew that meant that she would get less. How she befriended other cancer patients - how she was a true friend to them - not afraid to be there when they needed a friend the most. How she would play with other kids at the hospital or help out the Child Life Specialists - either by working or interacting with other kids. How she wanted to shave her head so that Emily wouldn't feel like a freak but then Emily convinced her to grow out her hair and donate it - which she did - twice! There's so much more; five years of day to day examples.

Now, Catherine has a trophy and a medal to prove she's a HERO! She doesn't need these for validation because everyone that knows her, has seen it. We are all so very proud of you Catherine! You are the best and WE LOVE YOU!

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Sunday, December 03, 2006
Quite a bit happened on Friday. We now have a plan. Emily and I are taking the first flight from Tampa to Memphis on Tuesday morning. We have to be at the airport by 5:30 am! This should be fun! We are scheduled to take the last flight out from Memphis to Tampa Tuesday night. It will be a long day but I think getting up and back in the same day will be worth it. The plan is to get that line out. St. Jude doesn't want to wait for the removal. I feel a lot better about the situation. It looks like we might still have to return on the 14th but I am going to see if we can bump one of the appointments that we have scheduled at that time. It won't make a difference if it's Dec or Jan. In addition, I secured a copy of the sinus CT scan done at All Children's last week. They put it on a CD for me and I also got a hard copy of the radiologist report. The sinus CT shows the orbital tumor so I am hoping that this will eliminate the need for scans scheduled on the 14th. It's worth a shot anyway!

Emily did better as the week progressed. She has always loved Christmas and is very excited about the preparations. We are going to try to put the tree up tonight or tomorrow. It's an artificial one which we got down from the attic today. We sprayed it with anti-bacterial spray and hosed it off. Hopefully, it will survive the sterilization process. Live trees are out of the question for bone marrow transplant patients. Last night, we did attend our cousin's First Anniversary/Christmas party! We only stayed a couple of hours but enjoyed every minute of it. Emily had fun surfing the internet for recipes. She made a couple of appetizers for the party. She has taken quite an interest in cooking -watch out Rachel Ray! Emily and Catherine also shopped for toys for the party because in lieu of gifts, toys were collected for the Anonymous Angels Charity out of Naples, FL. The charity primarily serves migrant workers in the area. I know both girls enjoyed this immensely.

Say some prayers that Tuesday goes smoothly. This is a big step forward - getting that line out. God Bless, Tricia

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Wednesday, November 29, 2006
I had typed this really long update on the laptop and then Grace signed on to my screen name from the desktop and I lost it all! I guess Barbie.com takes precedent!

To be honest, it's been a difficult week. Emotionally draining. I just can't believe how much a few days in the hospital took a toll on all of us. I guess we were taking too much for granted. I know that it's been extremely fortunate that Emily hasn't been in the hospital since May -that's right, since May! Believe me, everyday in the house makes me appreciate just how much work was done here. Emily has been healthy not only by the Grace of God, but also because of all the hard work done here by our neighbors, family, and friends. We are so grateful.

We will have Thanksgiving - complete with all the trimmings - just as soon as things settle down here. Today, we spent the entire day at All Children's. Last night, Emily went to flush her lines and one of them wouldn't work. The nurse couldn't get it to work today therefore, the line needs to come out ASAP. We are waiting to hear whether or not we will return to St. Jude before our scheduled visit for the removal or if it will be done here. A clogged line is a big risk for infection. Currently, we are scheduled to leave on the 14th but I don't think it can wait that long.

In addition, Emily has been complaining of feeling short of breath. She also said that her heart beat felt "funny". Today they did a stat echo and chest x-ray and thankfully, everything was normal. The GOOD NEWS - her counts were up from Monday! It is a good sign that her new immune system is working! THANK YOU CATHERINE! Her IGG level is also up. This helps fight infection. If it's low, you have to get IV IGG - which is actually a blood product (another reason to donate blood). Cancer patients use lots of this. After transplant, Emily was receiving it weekly. In addition to RSV, today we found out that Emily has also tested positive for the Adeno virus. The Adeno culture was positive from her throat but fortunate not her blood - which is a good thing! She has to be isolated in any medical facility until she tests negative. That's okay though -less chance of her catching something while she's there.

Thanksgiving for us is everyday. Not some arbitrary date on a calendar. A year ago, we were literally living life on the edge - so much uncertainty. We are so thankful for Dr. Barbosa and his staff along with Dr. Barfield and everyone at St. Jude. Emily has received the best medical treatment on earth! We are so thankful to all of you who have been there for us. We could not have survived this past year -the last five years, without you. God has been so good to us!

Christmas Cards from The Children's Cancer Center, are being sold in Publix. Emily's design is the manger scene. You can also order them online. Also, St. Jude's "Thanks and Giving" campaign is in full swing. Look for the St. Jude magnifying glass on products you buy. Hopefully, you will never have to experience St. Jude's but know that for all of us who have, it is the most wonderful place on earth. Walking through the doors for the first time, was truly a spiritual experience for me.

Please pray for Emily. Pray for her healing. Praise God for all the gifts he has given her. Pray for others who suffer. Including a friend in NYC battling breast cancer. Pray for all those families who have lost loved ones; especially children. Pray that they find PEACE.

Tuesday, November 26, 2006

Emily is home. She did test positive for RSV but hopefully, it has or will run its course. It's viral. Hopefully, all the other tests will come back negative. She's pretty wiped out - tired and weak. I hate seeing how much this hospital visit set her back. I am so thankful that Dr. Barbosa was in town for Thanksgiving! He is THE BEST! Please keep praying that she continues to move forward.





Saturday, November 25, 2006
Sorry the last update was so brief. Emily is still inpatient at All Childrens and just can't seem to get rid of this fever. Yesterday morning was pretty miserable. She began the day feeling pretty crummy and throwing up. Last night she spiked up again to 103 degrees and the same thing happened this afternoon. We just can't seem to find the right cocktail of antibiotics. As soon as they were started, she broke out in a horrible rash. All of her skin turned a splotchy purple and red color. We had suspected the meropenem but then the vancomycin did the same thing. She is allergic to several of the 'top gun' antibiotics which seems to leave these two as our only options. They have been pre-medicating her with benedryl and hydrocortisone but she is still reacating. The good news is that so far the cultures have not grown anything. The chest X-ray was clear but we haven't yet heard about the CT scan. They will continue with other diagbostic blood tests to check for viruses. The also swabbed her for strep throat, the flu, and RSV. We are still waiting on the RSV but both the strep throat and the flu came back negative.

Tomorrow, we are expecting to see an Infectious Disease doctor to see if he has anymore ideas of things that should be checked. I have made several calls to St. Jude and have sent emails to her primary doctor there. Thank goodness he is in town and has promptly responded to all of my correspondence. I have been keeping him up and giving him her results. Part of me wishes we could hop on a plane but Emily just isn't well enough right now.

Coming back here was the pits. Both of us realized how much we hated being here. There are so many bad memories. My stomach is in knots and neither one of us is sleeping well. Nights are especially difficult. You are in the dark with all the hospital noises; thinking and that's not a good thing. We are doing a lot of praying too. Just asking God to be with us right now.

This certainly put a damper on Thanksgiving Break. The girls were having a great time. Emily and Catherine had spent the day with their cousins in Land O' Lakes, baking something like 14 pies. They also highlighted each others hair and watched movies all day. It was the first time I had let Emily spend the night out by herself since transplant. When I got the call around 1:30 AM. She said that she felt warm so she took her temp and it was slightly elevated. I told her to take it again in a half hour and call me. It was higher but technically not a fever by hospital admission standards. I drove the 50 or so miles over to pick her up and called both St. Jude and All Children's doctors from the car. Both doctors agreed that the lines should get cultured. By the time we got to the hospital, of course she had no fever. Emily wanted to leave and go home but I had a feeling something was brewing.

The girls were looking forward to spending the rest of break hanging out. I was really looking forward to Thanksgiving Dinner, at home, just us. The hospital had dinner downstairs and we brought it up to the room. It wasn't the same but it was okay. Steve cooked his first turkey today. They ate at home this afternoon. I don't think there were any trimmings though. Oh well. We are planning the real thing for a later date. Today, we are counting our blessings!

Thursday, November 23, 2006

Emily is inpatient at All Children's. She started running a fever in the wee hours of the morning. She's not feeling good at all. Not how we thought we would be spending Thanksgiving Day. So very much to be thankful for though. Keep praying.

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Thursday, November 16, 2006
We finally got all of Emily's test results back from St. Jude. Her T-cells are 170, roughly the same as last time. She has been hanging around this number for the past few months. We also saw the neurologist while we were up there. I thought that he would consider weaning her off the seizure medicine but he wants to wait a few more months. Apparently, once you've had seizures, you have a chance of having them again. He said there's about a 35hance. He did, however, prescribe a new migraine medicine. Emily has an appointment scheduled for a repeat EEG in February so hopefully they will start weaning after this. The best part of our trip was probably seeing the Fall colors. It was so beautiful outside and very chilly. We enjoyed visiting with some of our friends at Target House. It was bittersweet. I had been looking forward to checking in on one of our neighbors, Ali. I learned that he had passed away that morning. Ali was 25 and had been a patient for several years. He fought long and hard - knowing that his chances of surviving this were not good. He was always friendly and had a sweet and gentle spirit. Ali was muslim and from Syria. Cancer transcends all boundaries. He was an ambassador for all humanity. He surely touched the hearts and souls of many. He always had kind words of encouragement for Emily and was constantly offering to help her in any way he could. It's just so unfair.

It seems like we have so much "in the works" so to speak. Emily wants to help Cousins Briana and Dave with a Holiday/First Anniversary Party they are having. Instead of gifts, they are asking that everyone bring toys to be donated to the "Anonymous Angels", a South Florida charity. It should be fun. We have also been asked to speak at an American Cancer Society Luncheon and we are trying to help the ACS secure a site for the 2007 Relay for Life. We still don't have any plans for Thanksgiving but we sure do have a lot to be thankful for. Matt won't be here with us but you know I'll be thinking of you when I make those mashed potatos!! We all miss you. It was one year ago today that Emily was officially diagnosed with the relapse. It was a very, very dark day. Thinking about it is still painful. October 17 - came and went. This was the anniversary of the initial diagnosis. In the cancer world, all these dates stick with you. Not always a good thing.
We are going to try to concentrate on what IS! We are going to PRAISE where we are right now - today!! WE ARE BLESSED.

We return to Memphis 12/14. Please pray that Emily's counts get out of this 'rut' and that they start to climb. Please remember all those families who will be one short at the dinner table this year.

Thursday, November 2, 2006

(Day 213)
Emily's been working diligently on her schooling. She is taking several online classes along with two hospital homebound classes through the county. She met another onliner, Reguli, who has been a great guidance counselor.

Emily's birthday week concluded with an 80's themed party. Thanks to cousin Briana for helping her with this. Emily spent all week planning and making decorations. She really did do a fantastic job. It seems like the 80's are a decade that everyone can relate to. We had a surprise guest appearance by "Billy Joel" (cousin Dave!). I think there was even a Cindy Lauper and Madonna look-a-like in the group. It was fun. I didn't have to go far for my outfit. I still had some things from the 80's hanging up in there. I'm just happy to still fit in them. It was so good to see Emily up dancing and doing her Will Ferrell routine with Catherine. I remember the summer that they worked on this after watching several Saturday Night Live skits. Needless to say, she was pooped by the end of the night.

Emily saw Dr. B last Friday and had her monthly infusion of pentamidine. This is a drug to help prevent pneumonia. I had been a little worried because she hasn't been feeling well lately but her counts were actually good. Dr. B thought she looked great and he said we should surely 'count our blessings'. Each and everday, we do. She has come so far. It is a miracle - a gift from God!

Tomorrow, I am traveling to Orlando with Grace for the State Special Olympics. This is HUGE for Grace. It turns out that it pays to be a bad bowler! Her scores were so low that she got bumped to what they call "Target Bowling". She did well enough in this to place. The event is going to be held at Disney's Wide World of Sports Complex. It will be strange to go back there with Grace. All our trips in prior years were for soccer with Emily and Catherine. We have some very good memories. Disney tournaments were always the best. It was all centered around family. It didn't matter if we won or not. One year, the team didn't win and Coach Doll, bought each of the girls a 2" high penguin kicking a soccer ball. That penguin sits in the center of their trophy displays. They are so proud of it! We'll spend the night and return late Saturday. Sunday morning, Emily and I fly back to Memphis and St. Jude. We look forward to seeing our St. Jude family but again, it's an awful reality we must face every month. I ask that all of you continue to be faithful in your prayers for Emily and all these families that are in this battle with us. Today, The Feast of All Souls in The Catholic Church, I ask you to pray for all those ANGELS who were called home. God Bless.

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Monday, October 16, 2006

Get Your Own! | View Slideshow

Emily's Birthday was spectacular - THANKS to Brad Richards, #19 with the Tampa Bay Lightning, Kasey Dowd, Sharin Nelson, and the Children's Cancer Center. You guys are AWESOME!

Brad's suite at the St. Pete Times Forum is for cancer patients and their families. He generously made this available to Emily for her birthday. Kasey and her best buddy, Shawn, went above and beyond sterilizing and decorating the suite - complete with balloons and a cake for Emily's birthday. During the first period, not only was the Lightning first to score a goal, but all the cheerleaders came by to wish Emily a Happy Birthday. So did former Stanley Cup Team Captain, Dave Andreychuk! She was later visited by other Lightning personnel and the team mascot. Some wild dancing by Catherine, Jamie and Katelin, got the girls on TV - which they were psyched about. During the intermission, the jumobtron read "HAPPY 17TH BIRTHDAY EMILY LESTER". It was great. Not only did the Lightning win but afterwards, all of us got to go meet Brad. He graciously signed just about anything and posed for several pictures. We got home around midnight - way too excited to sleep!

It was sooooooooo good to see Emily soooooooo happy! To all of you that made this evening possible, THANKS, from the bottom of my heart. It was truly a celebration and brought us a million miles away from the world of cancer. Thank You Katy for capturing the evening in pictures! Hope you had fun! Where's the picture of you and Dave?

Saturday, October 14, 2006 8:04 AM CDT

Get Your Own! | View Slideshow

Today is Emily's 17th Birthday! Wishing you ALL that life has to offer. ENJOY your day 'baby' girl! We LOVE you!

THANKING GOD FOR TODAY!

Monday, October 9, 2006

Our Latest Trip to St. Jude

Get Your Own! | View Slideshow

Sunday, October 1, 2006 3:58 PM CDT

Thanks to everyone who ate at Chili's! Emily went with Nana and Poppy to pick Catherine up from school and they all went to Chili's for lunch. Aunt Mimi joined them too. Steve and I had an early dinner there and ran into our neighbors, Bill & Jane Mathews. Our good friends Katy & Katelin Foley joined us along with Jamie, another good friend of the family. Our other neighbor Martha, had gone at lunch time with one of her good friends. I know cousins Briana and Dave, put the word out for all of their clients and friends to eat at Chili's - even if they ordered in. We really appreciate ALL the support. We can't say enough good things about St. Jude and every dollar donated, DOES make a difference.

This week has been very busy. It was homecoming week at St. Pete High. Emily went to 'Activities Night' on Thursday. It is held on the football field and is lots of fun. The girls play each other in powder puff football and the guys - well, they dress up like girls. There's lots of other silly stuff going on too. Everyone was surprised and happy to see Emily. Emily's friends were good about not letting people swamp her or give her hugs. They also made sure that no one crowded her. She had such a good time and went to the actual homecoming game on Friday night. That was a lot of fun. Everyone dressed in the school colors, green and white. Emily wore a metalic green wig leftover from St. Patrick's Day at St. Jude. She wore it in pig tails and looked really cute. Very spirited! Last night, several friends invited her to go to dinner with them before the dance. Two of the girls, Kanyon and Vicky, came over to get dressed. Catherine was busy doing hair and make-up for everyone while Emily was busy coordinating all the outfits. I put the word out that we needed dresses to borrow and our cousins and neighbors came through! It was the first time Emily went without the bandana. She found some tiny sparkly clips and used a little mouse in her hair. The group went to Carrabba's for dinner. The group was so thoughtful. One of them ordered dessert for all of them to share and they made sure that Emily got the first bite. Afterwards, they had planned to go to a movie but the theater was way too crowded so one of the girls invited them to come back to her brand new house, to watch a movie. It was so good to see Emily so happy. It's been a VERY long time!

Emily saw Dr. B this past Thursday. Her platelets had dropped but everything else was just about the same as it was in Memphis a few weeks ago. Dr. B looked at a blood smear under the microscope and he said that there were a lot of 'atypical' lymphocytes. He said that this was very common with viruses. He told me not to worry (yeah right!). I emailed our Dr. at St. Jude and he wants us to get it rechecked on Thursday. If it's still down, he'll schedule a bone marrow biopsy for Monday or Tuesday when we are there. We leave on Sunday. He too tried to assure me that he thought everything was fine. I have to believe it is because she's been feeling pretty good. She hasn't complained of as many headaches and her strength and stamina seem to be increasing. She is doing online high school and works for hours on her school work almost everyday.

Knowing that so many people still take time to pray for Emily is so comforting. It is God's abundant GRACE that has gotten all of us through this. Please, continue to pray for her healing.

Thursday, September 21, 2006 5:49 PM CDT

Returning to Memphis was tough. I was thinking it and Emily said it; "I really hate having to come back here". Not because of St. Jude but because of the reality of what it represents. Although we had a very busy schedule, we did meet up with some old friends who were also in town for their check-ups. Target House was hosting a dinner one night so all of us met over there and had a chance to see other families who unfortunately, are still there. So many new faces too. We met another family from Tampa who was on our flight. He's 8 and his name is Chase. He and his Mom, Krysten, could really use some support. His caringbridge site is fl/chase. We heard back from our transplant doctor a few days ago and all the labs were back. Everything looks good! Her T-cells are starting to come in which means her immune system is recovering. I don't know if I ever mentioned the extent to which our house was prepared. Everything was completely sterilized and filters were placed on the air conditioner. I know that everyone who worked here is responsible for Emily's recovery. She's been home for two months now and continues to be healthy. From the bottom of my heart, I THANK each and everyone of you! Your gift was priceless.

Living the life of a 'normal' teenager still is not within Emily's grasp. It's hard not to feel down about this because sometimes, it's just so sad. She has started online high school so that she can continue getting credits to work towards her diploma. We'll just cross each bridge as it comes - next semester - next year. For now, it's all about today. Right now, she's trying on dresses for homecoming. It's in a week and I don't see any problem with her showing up there for a bit! She looks beautiful. Thanks to Karen and Briana for bringing some dresses over for her and Catherine to try.

This past Monday, Carrabbas opened their restaurant during lunch to the Children's Cancer Center. Emily's design was picked for one of their Christmas Cards. It was one of the drawings she did during transplant. Emily thinks it looks like a little kid drew it but I think it turned out great. It was the only religious card printed - a manger scene - and isn't that what Christmas is all about? All of the artists were treated to lunch with the Mayor of Tampa along with several local personalities and corporate representatives. The Christmas Card Sales are a MAJOR fundraiser for the Cancer Center and the cards are sold at Publix Supermarkets in the surrounding counties during the holiday season. The part we enjoyed most about the lunch was seeing some very old and dear friends from the center. There's a bond between all of us - unlike no other.

Emily and I continue in our Bible Study every week. Emily contributes so much to the group. She's the youngest one there but in so many ways, I think we all look to her to lead us.

Bailee's family and Cameron's family need to be lifted up in prayer as they face their new lives without their precious children. Please continue to pray for Emily - that each day her strength is renewed and that her body continues to heal.

Thursday, September 7, 2006

(Day 160)
The past few days have made us all really HATE cancer. Heaven has two more ANGELS - our friends Cameron and Bailee. Please keep Cameron's Mom, Juli; Dad; Ed; brothers, Derek and Chad in your prayers. Also remember Bailee's Mom, Robin; Dad, Mike; and her brother Michael.

Cameron's Site

Bailee's Site

They could really use your prayers and words of encouragement right now. Please pray for Emily and Catherine too. This is the worst type of pain. It's a true test of their FAITH.

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Thursday, August 31, 2006
(Day 153)
First, let me ask that you all pray for our friends Cameron and Bailee as well as their families. Cameron has been battling his cancer for six years now and he is only 14. He is a wonderful young man who has a smile and eyes that would melt your heart. He was our next door neighbor at Target House in Memphis and was Emily's reason to leave the apartment. She enjoyed just hanging out with him and when Catherine came to visit, all of them shared a wonderful week of summer together. It was great for everyone. It felt so 'normal'. Cameron went to Denver to try an experimental protocol but sadly, he was told that they couldn't help him. He IS in God's hands and as his Mom Juli said, "There is still HOPE". Bailee has been fighting over five years. She is at All Children's in ICU. Please pray for them.

Emily and I went to Miami last week. We were at the University of Miami's Bascom Palmer Eye Institute. It was a VERY long day but we were rewarded by a spectacular sunset drive through the Everglades (Alligator Alley). Emily commented that it was the longest sunset she had every seen because we were 'driving into it' as we headed west.

The doctor that we were there to see came highly recommended so we were a bit surprised when he deferred us to a specialist. I thought he was the specialist. They aren't quite sure what the mass is but neither doctor believes that it is cancer or related to the leukemia. They said that it appears stable but is somewhat compromising the optic nerve. It is located in the superior, anterior orbit, beneath the brow. The specialist, was an opthalmic plastic, orbital surgeon. He could feel it by palpitation and said it had the contour of a dermoid cyst/tumor. The problem is that the bone has been excavated or eroded and reconstruction will be necessary. Everyone agrees that it needs to be removed but the consensus is to wait. Emily needs to be more stable from a hematology standpoint. The surgery will involve time in the hospital and residuals could be numbness of the forehead (which may or may not go away), double vision (probably correctable), or a sunken eye (again, probably somewhat correctable). For someone who's best physical attribute is her eyes, we want THE BEST surgeon to operate! We will discuss this further with our transplant doctor and will return to Miami for a follow up after that. We are not sure where the surgery will be done.

Emily saw Dr. B last Monday. Her counts are up and she is doing well. She had her month pentamidine infusion so we had to hang out there for a couple of hours. This is an IV antibiotic which helps prevent pneumonia. I had been a little worried because all of us have had sore throat and cold symptoms. We have alternated wearing masks and I am sterilizing everything several times a day. I realized how much I truly appreciate the work done in our house while we were away. It is so easy to clean - I can get through it on a daily basis fairly quickly! Thanks again to everyone who helped. This means a healthier Emily! We return to St. Jude on 9/10 and again, hopefully it will be for just a few days.

Emily hopes to start online schooling after labor day. Both of us started a weekly Bible Study which our neighbor is hosting every Thursday. Today was the first day. It's sad to see everyone back at school, going to football games, preparing for homecoming etc., and Emily can't go. She loves school and I know how hard this is for her. She spends a lot of time making bracelets to sell to raise money to fight cancer, watching movies, or organizing me! The other day I came home and she had put all my papers in one binder - complete with tabs and all!!! She even organized Grace's dresser drawers. I would love for some of her organizational skills to rub off on Catherine (aka "Pig-Pen").

We appreciate all your love and support as we try to return some normalcy to our lives. We are trying to make the most of everyday. God Bless and keep praying for Emily and for all these beautiful children.

Saturday, August 19, 2006 8:11 PM EDT

(Day 141)
We returned from Memphis mid-week. It was very hot and hazy there! Emily's counts were okay. The ANC was down some but the platelets were up. We are still waiting to hear the results from some of the other tests. It was disappointing to learn that she won't be weaned off the seizure medications yet. The EEG was not normal and still showed 'something'. I have more questions than answers and have calls in to both the neurologist and our transplant doctor. I learned all this from the physician's assistant and she couldn't answer many of my questions. Emily doesn't need IVIG anymore - yipee! You need to be over 400 to get off it and her count was over 500. She still has a very low T-cell count so she needs to be VERY careful about exposure to germs, bacteria, etc. It was actually lower than the last time they checked it. These are the cells that take the longest to come back. On the bright side, some of her diet restrictions have been lifted. We decided to take advantage and stopped at our favorite pizza place on the way home from the airport. Poppy treated us to a "Super Sardo's". We have been longing for good pizza. The owner, Santo, was there and he made it special for us. He completely understands what we are going through so he was fine with washing his hands and using clean utensils etc. to be cautious of germs. Santo's younger sister, Stella, is in NYC, battling cancer for the third time in her life. Please keep her in your prayers.

Thursday, we head to The University of Miami to see another doctor regarding Emily's eye tumor. We need some resolution. We also have to squeeze in Dr. B along with her monthly pentamidine treatment which helps prevent pneumonia.

Last night, we had a 'girl's night out'. We drove over to cousin Briana's new house north of Tampa and had a sleepover. Cousins Briana, Danielle, Keeley, Ashlynn and Aunt Kathy were all there. Cousin Dave was also there for the sleepover. He was just like one of the girls! We love you Dave and yes; the girls said you do make the best french toast! We ate more than our share of junk food and watched several movies. It was VERY good for Emily. Briana's house is brand new and VERY clean. She even waited to move her cats in just so that Emily could come over.

Happy Birthday to Grammie 8/18, Uncle Terry and Aunt Joann (8/19). Please pray for all the test results to come back good. Pray for a safe trip to Miami and for answers. Please keep our friend Cameron close to your heart along with his Mom Juli, his Dad Ed, and his brothers Chad and Derek. Juli has no idea how much she has taught me! Cameron - is truly amazing. God Bless you Cameron!

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Sunday, August 13, 2006


(Day 135)
Yesterday was the Helen D. Muley Cancer Foundation's First Annual Golf Tournament. The event was in honor of Emily. Needless to say, we had a blast! Although Emily was unable to stay the whole time, she did make it to the tournament dinner. It was one of Emily's first real outings and she really enjoyed it. Several of our family members and friends attended. A special Thanks to the Foley, Maricone, Jones, Evans, and Orville I families! Helen's husband Tony, spoke at the event. He gave a very moving speech about his wife, Helen; the reason he started this foundation. It was a wonderful tribute to a woman who has and continues to touch so many lives. He talked about Emily, bringing her to the front of the room. He spoke of her courage and strength in fighting this battle. The entire room was completely moved by his words.
Emily actually got out in the sun for a while. Her and Catherine had a blast, cruising around in the golf carts. Emily admitted she was a little scared when Catherine took the wheel.
The tournament included a raffle which the girls all enjoyed. We were cracking up when our friend Kaley Foley, who's ten years old, won the covetted case of cigars! Unfortunately, her Dad made her put them back in the raffle for someone else. Emily won a gift basket from our Aunt Jackie's dental office and the entire room was roaring with laughter when Grace's name was called out for a bottle of wine!

Emily raised some money for the foundation by selling glass bead bracelets that she made with her friends. Thank you Cece and Meghan for all your hard work! The girls plan to make more as a fundraiser for this years Relay For Life.
Our family would like to thank all the Muleys for putting this event together. Tony, Dennis, Dean, Darren, Dave, & Briana; you are all so wonderful! Also, thank you to the Vaughans; Terry, Kathy, Danielle, & Ryan. You all worked so hard and we appreciate everything you've done for our family.




Today we headed back to Memphis. Emily and I are currently staying at Grizzlies House. Our flight went well. The Tampa Airport was actually not very crowded but when we got to Memphis, it was packed. I pushed Emily in a wheelchair to conserve her energy but when we got here, she was still pooped. We had pizza for dinner and are somewhat settled in. Tomorrow is a big day at the hospital with lots of appointments. We are praying for good results and an uneventful stay. Emily has actually been feeling pretty well. I think being home has been good for her! Tomorrow I will update after her appointments. Please keep our friend Cameron in your prayers. He will soon head to Denver for a specific type of drug therapy to get him in remission. Also, Cousin Stephanie's newlywed husband, Dan, was deployed to Iraq. Please pray for his safety as well as the safety of all those serving alongside him.

Sunday, July 30, 2006

(Day 121)
These past two weeks home have flown by! Being home has certainly been good for Emily! She's hardly complained about anything. She saw Dr. Barbosa on Friday and he thought she looked great. I promised myself I wouldn't cry when I saw him but it was tough to hold back the tears. A few did slip out! Emily had her monthly Pentamidine infusion. Her counts were good although the platelets were down some. We were told that it would be like this but still, you never want anything to 'go down'. The best part about the visit was seeing our friend Bailee who had her transplant in NYC. It's been almost two years since we saw her. Bailee and Emily were both diagnosed in 2001 and went through treatment together. What a blessing that both girls are back home!

The first week home was spent working around the house. We parted with a lot of junk! Everything that came back into the house was Lysol wiped and/or cleaned. We are still amazed at how much work was done. It is just incredible. Again, we appreciate all the hard work and TLC that went into preparing the house for Emily's return. We have been so blessed! This was truly a labor of LOVE and all of you have touched our hearts.

School starts 8/8 - way too early here! We have been busy. We took advantage of Florida's no sales tax holiday to purchase clothes etc for Catherine. Grace will wear what Catherine outgrew. Meanwhile, I found out that the county kicked Grace out of the system since she was absent so much after I had been told 'not to worry about a thing' when we left for Memphis! I pray her "re-activation" goes smoothly. I looked at a lot of schools before I chose her current one. She has the best teachers and she is very happy there. Grace will also be having surgery before school starts. In Memphis, she developed a cyst in her face. We saw two doctors up there and decided to wait until we returned to Florida. She had the ultrasound the other day and it is a 'complex, benign cyst' but needs to be removed. She also had a few suspect moles which the doctor recommended be removed. It is so hard because of her disability but she made us so proud the other day when she did the ultrasound without any sedation (a mix-up).

We will return to Memphis on 8/13. Please continue to pray for Emily's healing and for all children who have to fight this fight.

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Sunday, July 16, 2006
(Day 107)
Yesterday was a WONDERFUL day! The flight was perfect - we flew down the coast and came in over a beautiful Gulf of Mexico and intercoastal waterway. When we landed, I just wanted to scream. Grace and I had been praying together and Emily said Grace was REALLY loud with her "THANK YOU JESUS". No way!

Daddy picked us up and in all the confusion, we came home with an extra piece of luggage - no wonder we couldn't fit everything! We did return it to the rightful owner today. Needless to say, it was very emotional. There were a ton of people out in front of our house to greet us and lots of signs welcoming Emily. It was great! It felt so good and I can't THANK all of you enough. "While we were out"; we got an "Extreme Home Makeover". Our family, neighbors, and friends did more than a fantastic job preparing the house for Emily's return. Everything is perfect. We were stunned! It is so unbelievable and we hope that each and everyone of you knows how much we appreciate ALL that you did. We are truly blessed. The best part for me was having all my children together. Matthew flew home Friday and was there to greet us too. Catherine has been working diligently to help get the house ready for all of us. We LOVE you "Kitty". It was very, very, special.

GOD has been so good! HIS MERCY and GRACE, brought Emily
home. She still has a long way to go but she has been blessed by strength, courage and HIS GIFT OF GRACE. She is a living testimony to the POWER OF PRAYER!

Friday, July 14, 2006

(Day 105)
The past 24 hours have been full of ups and downs! Emily was extremely disappointed yesterday when the doctor said she had to stay for another week. However, after much persistence (including several tears); our new best friend, Dr. Ray Barfield, agreed to meet Emily in clinic early this morning (even though he wasn't scheduled to be there). He gave us the coveted "green light" and WE ARE COMING HOME! Steve left here with a packed car right after the appointment and I am busy cleaning up the apartment and packing the rest of us. Emily, Grace & I, will fly home tomorrow. Grace isn't sure what's going on. She just wants to go home to "Grace's House". She sat in the car once it was packed and it took some convincing for her to get back upstairs. We explained that she was going with Emily and Mommy on the airplane.

THIS IS TRULY THE DAY THE LORD HAS MADE!!! LET US ALL REJOICE AND BE GLAD!

There are several other families who are also leaving but many are not yet there. Our friend Cameron returned to Target House last night - a step forward for him. Please continue to pray for Cameron and all these other children of St. Jude.

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Tuesday, July 11, 2006
(Day 102)
On Monday, our primary doctor finally returned from vacation. After asking him about our possible visit, he informed us that he had actually been thinking of sending Emily home sometime in the next couple of weeks. As a result, the visit is now up in the air. We thought that we probably shouldn't come home for a few days if we could very shortly be returning anyway. Emily is happy to know that home is literally within sight. She is hoping that this weekend's planned "visit" can now just be changed to a one way ticket home! We are still working out the details with the doctors. In addition, we are still awaiting the results of Monday's biopsy. There is one test that takes several days and they don't expect to know the results until Thursday or Friday. All her other counts were good.

In the meantime, we have contacted Dr. Barbosa and told him to get ready! Emily will transition to his care. St. Jude is still our primary treatment facility so we will fly back here once a month for a few days of testing. We are all very excited but scared and nervous at the same time. St. Jude has also recommended that we get a second opinion regarding the tumor on Emily's eye. If anyone has any recommendations, please let me know. We have had several names thrown out at us - including University of Miami, John Hopkins, & CHOP in Philadelphia.

It is going to be very hard to leave here - especially Target House. We have met some very wonderful families and have come to know and love the staff. Grace will surely miss this place. She says she wants to stay here. This past Monday, Target Corporation hosted a lunch for all the families here at the house. The guests of honor were Tiger Woods and Scott Hamilton. Both have contributed generously to Target and St. Jude. Scott was very friendly and took the time to greet many of the families. To me, Tiger looked like a little boy! He was very quiet - and appeared to be moved by what he saw. I couldn't help but think that he just lost his own father to this horrible disease and he too, is in need of our prayers.

We are still taking it one day at a time. Emily asks that you please pray that everything can fall into place and she can finally go home. Although Emily will still have the same restrictions and limitations, being able to travel and leave Target House, is an enormous step in the right direction! As always, please continue to pray for Emily and all the other St. Jude patients.

Saturday, July 8, 2006

(Day 99)
We are keeping the updates below on for a little while longer because of the pictures. Emily had some trouble with sizing them but finally got the problem solved.

The fourth was pretty uneventful. We didn't realize until it was too late that the fireworks were on the third instead of the fourth! It rained for a bit but afterwards, we did BBQ and eat under the pavillion. We had lots of leftovers so we brought the security guard dinner. He was in heaven!



Catherine, Grace, & Emily

On Wednesday, I brought Emily into clinic due to some severe stomach pain. The doctors examined her and ran some tests before sending her on her way with pain medication. She's been afraid to eat too much. In the afternoon, she felt better so we decided to take Catherine to the zoo. She pushed Emily through the park in a wheelchair. When it started to rain, Grace got in the chair with Emily and Catherine pushed both of them through the downpour. We got a little wet but overall, had a good time.







Thursday we took Catherine to the lobby of the Peabody Hotel to see the ducks march out of the fountain and into the elevator - simple pleasures! The girls got a good seat on the floor next to the red carpet. Grace loves this! She gets hysterical watching the ducks march and flap their wings.






Afterwards was Target's monthly BINGO night. Catherine was obnoxiously entertaining as she struggled win a prize. Her eyes were set on a brand new basketball that she unfortunately didn't win. Grace lucked out and got the DVD version of "Mean Girls" in the first round.

Catherine left yesterday. Two weeks was way too short! My eyes are tearing up now as I write this. I miss her so much. We all do. She is always the life of the party. This is one of the worst parts about all this - not being together. When she left, I know she took a piece of my heart with her and I am sure her sisters feel the same. Yesterday, was a VERY quiet day. Ironically, Daddy came off the plane she was getting on! He is back here in Memphis with us for a couple more weeks at least.

Tomorrow marks day 100. Emily's bone marrow biopsy is scheduled for Monday morning at 9am. If you remember, please pray for her at this time. She will also have several more tests that will tell how she is really doing. She is still having stomach issues but according to the doctors, this is not unusual. She will most likely be seeing a GI doctor this week. More than anything, she is hoping for a visit home in the next week or so - she really wants to come Friday the 14th. As it turns out, Pilot Gas out of Knoxville has scheduled Memphis as a stop for their corporate jet on Friday. The jet is headed to St. Pete. We have seats reserved. A lot has to come together before then though. We VERY much appreciate all our neighbors, friends, and family, who are working so hard to get our house ready for Emily. We are incredibly blessed. We have to get through all the medical first though and the 'green light' from the doctors.

A special prayer request for our neighbor here at Target, Cameron. St. Jude is an entirely different world. You really take one day at a time and THANK GOD for all the little things. Lots of kids and families in need of prayers.

Monday, July 3, 2006

(Day 94)
The girls enjoyed the last couple of days of camp. Thursday evening was a 'Mexican Fiesta' and Grace discovered Salsa dancing! She was incredible - really having a great time. Several parents took pictures of her.


She doesn't participate in many things and for her to do this, was HUGE! Thanks again to all the volunteers who made this possible.

We hung out here over the weekend. Yesterday was the St. Peter's picnic - the oldest in Memphis. This was the 131st year for it. Since the Catholic Church donated the land which Target House is built on, the picnic is here on the front lawn. Proceeds go to Catholic Charities. Although it was VERY HOT, the girls were able to enjoy many of the activities. Their favorite was the trivia game show.


The winners went into a booth and had the chance to scoop up as much money as they could in twenty seconds. A couple of patients were able to cash in. Both girls competed in several rounds and then teamed up for the final game. They never made it to the cash booth but had lots of fun trying. They were happy their friend, Jace, scooped up $15. We didn't win the car that was raffled off - oh well! Hopefully, lots of money was raised which will allow Catholic Charities of Memphis to carry out their missions.




Grace going down the slide...




Catherine climbing the rock wall...




Okay...Catherine was way to big for this!




But Grace loved it!

Clinic was this morning. Emily's counts are good. She does have some T-cells coming in and some B-cells but they are no where near the normal range. Everything seems to be progressing as it should post transplant. She is still having issues with her stomach. A lot of the medications could be to blame. The doctors are monitoring it. The last CT of her eye shows that the tumor is unchanged. That has to be good news. They will repeat the scan in about a month. We hope to know more once our primary doctor returns from vaction. She will need surgery - we just don't know where or when.

Catherine's visit is flying by. She will leave Friday. I don't want to think about it. I LOVE having all my girls together here. Next week is BIG -Emily's 100 days. She will have a bone marrow biopsy along with several other tests. PLEASE PRAY for Emily to be free of this horrible disease and PRAY that her marrow is working properly. PRAISE GOD and REJOICE that she has come so far.

Again, there are lots of children here who are gravely ill. There is so much suffering and pain. Please say a special prayer for our neighbor Cameron who was admitted for fever. Cameron has relapsed four times and has been battling this disease for six years. He is only 14. The girls have spent some time with him lately watching movies and hanging out. They really enjoyed it! They seem to be able to relate very well. Cameron has a 'special' brother, Chad, who is like Grace, so they really have quite a bit in common.

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Wednesday, June 28, 2006
(Day 89)
Since Catherine has been here, many people have commented that Emily is walking with some 'pep' in her stride! Aren't siblings great? It feels so good to have Catherine here. She has already made a lot of friends. Sunday, we took a riverboat ride down the Mississippi. It was a lazy day and not too hot. The boat wasn't crowded and there was a soft breeze blowing. We sat on the middle deck so there was lots of shade. It was a great way to spend an afternoon.



The girls have all been attending C.A.M.P. Wishing Well being held over at the Ronald McDonald House this week. A group of teens from Grace Community Presbyterian Church in Blairesville, Georgia are here on a mission trip and volunteering at the camp. They are joined by some more families from Treasure Coast Community Church in Palm City, FL. There are several activities every evening as well as dinner. It's been a lot of fun and I can honestly say, that Monday night, we had the most enjoyable evening in all our time in Memphis. The dinner was catered by Carrabbas and afterwards, several on the mission trip brought out their guitars and played while others joined in song. Grace knew several of the worship songs from church and she had a front row seat, singing and clapping along with them.

Emily had clinic Monday and her counts had come up a little. She is still one hundred percent donor - for which we THANK GOD! Tomorrow, she will have a repeat CT Scan to once again, review the status of the tumor behind her eye. Again, we are praying that this is a small hurdle. There are still a lot of questions to be answered and since our primary doctor is on vacation this week, we will have to wait.

Daddy flew home this evening. He's been here since March 23. He'll be returning but we are not sure when. Our HOPE is for a July visit to Florida but we continue to take it a day at a time. We are settled into Target House and have met some truly wonderful families. There are about one hundred families who live in the two buildings and we have come to know several. If you have a chance, there is an article about Target House in this week's NEWSWEEK magazine. You can probably read it online. Target Corporation has gone "above and beyond" as evidenced here. If you work for Target, you should be very proud!

Always, there are so many in need of prayer. So much need for healing. Some days, my heart is so heavy. We are surrounded by gravely ill children who despite all their suffering, still manage to smile or make me laugh.

Bless all of you who continue to be faithful!

Friday, June 23, 2006

(Day 84)
It has been exactly 12 weeks since Emily’s transplant. We are so excited to be this far out. Yesterday we had another clinic appointment. Emily’s counts dropped even more so the doctors decided to give her a shot of GCSF. We don’t have clinic until Monday so her blood will be checked again then. She also received her scheduled infusion of pentamidine; a prophylaxis that helps to prevent pneumonia.
Last night was Target House’s monthly birthday celebration. Each month, they have a party for all the children who will be celebrating birthdays. The girls enjoyed themselves with pizza, cake, bingo, and prizes. Emily especially enjoyed the stepping performance by Alpha Phi Alpha; a fraternity from the University of Memphis.
We were able to get Catherine a flight here on short notice. Today she arrived safely in Memphis. We are thrilled! This happens to be the week that a lot of activities are planned by St. Jude so the girls will have quite a few things to do. Catherine looks great! I LOVE you Katy and Ed for taking such good care of her these past few months.

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Tuesday, June 20, 2006 12:20 AM CDT
(Day 81)
It seems like quite a bit has happened since my last update. Emily had clinic on Thursday as well as her CT scans. Afterwards, we met with the oncology ophthalmologist, who was able to give us some more definitive answers. We learned that the "it" is located in the left orbital region between the eyeball and the skull. The ophthalmologist believes it is either a neurotumor, a dermoidcyst, or a blood vessel tumor. Whatever the case, it has remodeled the bone behind the eye. This leads us to believe that this is a benign process that has probably been with her for quite some time. The tumor is also pressing against the eyeball. Fortunately, Emily is compensating and has 20/15 vision. Eventually, the tumor will have to be removed; however, the procedure presents several risks.

We also had a follow up appointment with the neurologist. He is pleased with her progress post seizures and will begin weaning her off the seizure medication in a few months. Before doing so, another MRI will be repeated as well as the EEG. We also discussed Emily’s migraines. Unfortunately, he is presently unable to give her anything for them because of all the other medications she is taking.

On Friday, my sister Joann called from Nashville inviting us to come over for a visit. Since we were all feeling a bit down, I decided to call Emily’s doctor on the off chance that he might say "sure go ahead". Well, he did! We left here pretty quick and made the three hour trip. Cousin Parker was supposed to fly down to Florida but changed her flight at the last minute. Needless to say, we were very happy to see them both. Aunt Joann drove us around and showed all the sites. We saw some of homes to a few famous country music stars and all the landmarks including Music Row and Vanderbilt University. We also had a special treat when her friends Mark and “Big D” came by to meet us. When Emily relapsed, they had both networked to get us into St. Jude.

Yesterday, Emily had clinic again. Her counts are down from last week but the doctors do not seem to be worried. They continue to wean her off the anti-rejection meds and she seems to be tolerating this well. Her GVHD does not appear to be getting any worse and her CMV markers are down. She also received her weekly infusion of IVIG.

As always, please continue to pray!

Wednesday, June 14, 2006 12:18 AM CDT

(Day 75)
Emily is now 75 days post transplant and motivated by the possibility of returning home. From what we hear, a lot has been happening on the home front to get the house ready for her arrival. We are in awe of the outpouring by family, friends and strangers. All of you are THE GREATEST. Emily is really excited and so are we.

Lately, when we are not at the hospital, we have been busy trying to find things to do. It has been tough, especially since Emily can’t go to any public places. She can’t wait until the doctor gives her the okay to hit a mall!
Luckily, Target House schedules quite a few activities here that make it easier. So far this month, they have had a barbecue, game night, dinners, movie night, and BINGO. Grace has been enjoying the playground which in the evenings is alive with kids. She has made many friends here who try to include her in whatever they are doing. Last night, Newsweek Magazine was here taking photos of the patients as they played in the back yard. They are doing a story on Target House which will appear in an upcoming issue.

Emily had clinic on Monday and although her counts were down, the doctors are very happy with her transplant status. Her GVHD is looking better so they have started to wean her off the anti-rejection meds.
We also met again with the nutritionist. Unfortunately, we are still working on keeping Emily's sugar under control. This week we are experimenting, to assess her readings without insulin. Poor Emily now has to suffer without any concentrated sweets!
Last week's MRI of the brain showed no fluid. Needless to say, we are very pleased! The syndrome which had caused the seizures (PRES), has totally cleared up. On the down side, something showed up in the left orbital region on the MRI which the doctors can’t seem to identify. They are all perplexed but do not think it’s a tumor. Today Emily had her vision checked tomorrow, we have a follow up with the ophthalmologist. She will also have several more scans repeated and meet with the neurologist. I am asking that everyone pray this is nothing.

Tuesday, June 6, 2006 4:23 PM CDT

(Day 67)
As it goes in our world, "no news is good news"! Emily has been here at Target House nearly three weeks and she continues to get stronger everyday. She is still on quite a few medications which seem to be changed around with every clinic visit. Her appetite is good and she is maintaining her weight. If she loses any, she will have to go back on TPN. Her blood sugar issues finally seem to be resolving. Today is the first day she did not receive any insulin injections. This is very good news because it allows her more food choices.

We saw our primary doctor yesterday at clinic and he is optimistic that we can return home as early as July...even if just for a visit! This was truly wonderful news! It came at just the right time because we have all been down in the dumps, missing home.

We were so glad to have visitors this past weekend. Uncle Terry, Aunt Kathy, Cousins Briana, Dave, and Danielle along with Aunt Deirdre and Eric were here. Emily was feeling pretty good so we were able to visit with them quite a bit. Saturday, we showed them around our "home away from home"; Target House. We also had them ride the shuttle with us over to the hospital where we showed them around and gave them a tour. I hope they walked away knowing what a great place St. Jude is. On Sunday, Steve took them all downtown while Emily napped. That evening, we had a barbecue on the Target House lawn, under the pavilion. Last night was "movie night". All of us enjoyed watching a movie together in Target's Amy Grant Theatre. Simple pleasures! Today, it was VERY sad to say good-bye. I couldn't hold it in and burst into tears in the parking lot. Then as we were walking back into Target House, Emily started crying too. Having everyone here just made us feel so loved. For a few short days, we forgot about the world of cancer and felt at home among family. We LOVE you guys and will surely miss you!

Emily has clinic tomorrow but just for labs. Friday, she will have an MRI of her brain and I am asking that all of you pray that the condition which caused the seizures last month, has resolved! God continues to bless her each day. While I was waiting with her for her blood draw yesterday, I saw something the nurse had hung on the wall - something about God's word overcoming the world - overcoming fear, anxiety, worry, illness - everything. So please, continue to pray!

Wednesday, May 24, 2006 3:19 PM CDT

(Day 54)
We enjoyed a pretty relaxing weekend. Emily spent a lot of time scrapbooking. I managed to get outside for awhile and even read a book. It was nice to feel the sun! It's actually pretty warm here but doesn't seem to be as humid as Florida. Although, all the locals complain about the humidity here. Maybe the worse is yet to come.

Emily spent most of Moday at the clinic. She got her IVIG infusion which lasts about two hours. She also had labs and met with the doctor and nutritionist. She has lost some weight since coming off the TPN but they are going to give her a couple of weeks to see if she stabilizes. She is eating more and it seems like each day, she is reintroducing a food item. She is still diabetic so we have to 'count carbs' and give insulin shots accordingly. Hopefully, this too will pass. Her labs were a little out of whack - like a 12,000 plus ANC and a 14 plus white count. Not sure what this was all about so they drew blood cultures and checked her CRP. Today, however, they were 'regular'. Not normal but 'regular'. She did test positive for C-dif again so she is back on the antibiotics at a higher dose. They change her meds just about everytime we go. Just when we think she will have less pills, they add another. Overall, she is doing well but is suffering from a slight case of graft vs. host. The doctors actually want to see some of this though so it's not really a bad thing. Today is day 54 and they are already beginning to wean her off of things.

The PGA was here at Target House last night. Emily had her picture taken with several golfers who were in town for the St. Jude/FedEx tournament. Many of the golfers brought their wives and children here and all of them were very gracious about pictures and autographs. There were nine putting greens set up out back and the golfers mingled with all the kids and even putted with them. One of those huge inflatable slides was set up on the back lawn and surprisingly, Emily climbed to the top with Grace and they both went down! It wore Emily out but just the fact that she was even able to do it, was a miracle! She is getting stronger everyday. It's been several days since she used the wheelchair. Grace had a blast and made several trips more by herself down the slide. We had such a good time watching Grace 'steal' all of the ceramic animals on display at each of the holes. She brought the entire forest to one hole and that's where she camped out. When kids putted and their ball didn't make it in the hole, she graciously picked up the ball and put it in for them. I don't think she wanted the golf balls to hit the animals. It was so cute and very entertaining. The night also included snow cones and an ice cream truck! All the families were offered tickets to the tournament but we decided against it because of the heat. I just couldn't picture Emily outside all day and walking hole to hole.

Tonight is 'movie night' here at Target. We are looking forward to it. Simple pleasures! Emily met a very nice girl from Boca Raton, FL. She introduced Emily to some other teens. I know Emily is anxious to hang out with her peers. She will continue schooling over the summer just as a refresher. There is an actual schoolroom at St. Jude and teachers. This will give her a place to go each day and again, another opportunity for her to be with her peers.

We are hoping to get Catherine up here. Missing her and Matthew terribly. Sending both of you hugs and kisses.

Again, we are so grateful to everyone who continues to love, support, and pray for us. Please pray for Emily's healing and for all these beautiful children and their families.

Saturday, May 20, 2006

(Day 50)
It seems like we finally can catch our breath. Emily came home on Isolation so we had to use a special hospital entrance for Thursday's clinic visit. Fortunately, her last C-dif culture was negative so we are now off these restrictions. Emily was also finally taken off her IV nutrition! Unfortunately, she still needs to improve on what she is taking in. We are trying to increase protein in her diet. We meet again with the nutritionist on Monday. The doctors also decided to restart Emily's physical therapy. This past hospital visit has left her terribly weak and atrophied.
Yesterday, we had another clinic appointment. Emily was started on magnesium due to a low level in her blood. Her counts and chemistry panel were good so the doctors are giving us the weekend off. I am praying it is uneventful! Today, she finally finished her last day of steroids so we are hoping to come off the insulin sometime in the next few days. (The steroids had made her a diabetic again.)
We had a nice dinner last night outside under the pavilion. Steve barbequed hamburgers and we picnicked together as a family. We were missing a couple of people though - Catherine and Matt. We sure wish you guys were here.
We owe a ton of THANK YOUS! I hope we haven't left anyone out. We have receive so many beautiful cards and letters in the mail from both friends and strangers. So many have taken the time to write some very touching messages as well as share with us scriptures. Often, I will read these more than once and I personally, find strength in them. There are days when I can't concentrate enough to finish a prayer even though I may have started a hundred of them.
Nana...Thank you for the giftcards!
Aunt Kris...for the photos!
Mrs. Jennings Kindergarten Class of Ridgecrest Elementary...for the letters!
Cousins Lena & Ed Kochian...Thank you for enrolling Emily into the healing masses for the Society of the Little Flower. Also, thank you for the St. Anthony medal and the giftcard!
Dario & Rosalie Borselli...for the Mass card and the phone card!
Aunt Kathy...Thank you so much for the beautiful Rosary Beads!
Cousins Dave and Briana... for the Keepsake Ornament
George Barber... for graciously taking time out of his VERY busy schedule to drive his Mom, Martha, down here from Illinois to visit. Martha is our neighbor across the street at home and we think the world of her! She has always been there for us. We had a wonderful visit with her.

Wednesday, May 17, 2006

(Day 47)
Please join us in prayers of THANKSGIVING - Emily is still on Isolation but we are all back at Target House! We go to clinic early tomorrow so I will update after that.

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Monday, May 15, 2006
(Day 45)
As many of you know, this past week has been a whirlwind of stress and anxiety for our family but now I finally have some time to sit down and type. I really don’t want to relive the details and events of last Sunday and Monday, however, so many people have been asking what happened.

Friday evening, Emily had gone to the hospital to begin twice daily infusions of a new anti viral medication. Apparently, her CMV virus was starting to copy and they want to keep it from doing so. The plan was for me to do the twice daily infusions at home. This worked out great Saturday and Sunday because it gave us more freedom. Emily was starting to eat more and showed a dramatic increase in energy. Sunday was actually one of her most active days.
Target House was celebrating Mother’s Day early and a local spa was there volunteering their time. I took advantage of a haircut and with Emily’s urging, I decided to pamper myself and went ahead with the french manicure and make-up as well. They had a nice dinner for all the families too. Even Emily indulged, with a few bites of lasagna.
Sometime after dinner, Emily was lying around the apartment and complaining of a bad migraine. She fell asleep early after a dose of morphine and the rest of us turned in as well. Around 11 PM, I awoke to a loud thud and cries from Emily. Steve and came into the hallway, only to find Emily on the floor next to her IV pole. She was holding the back of her head, crying, and couldn’t really explain how she had hit her head. She had gotten up to use the restroom, felt dizzy, and then just sort of stumbled. Steve got her an ice pack and we helped her back to bed. Then, all of a sudden she began complaining that she felt really weird and something wasn’t right. She began to panic, saying that something was happening. As soon as I got the light on, I could see that she was having a seizure. We called for an ambulance and there was some confusion over which hospital the ambulance should take us to. St. Jude is private and doesn't have an emergency room. The ambulance was actually here about to unload when they diverted us to LeBonheur. It wasn't clear at the time if she had a bleed in the brain or had a stroke. Once at LeBonheur, she had another seizure in the ER. She was moved to a more critical care area and during the course of the next few hours, had three more seizures. There were many phone calls back and forth between the two hospitals. The ER doctor at LeBonheur was great. He knew many of our doctors from St. Jude and really tried to do the best possible for Emily. Emily was moved to ICU there and finally, the seizures stopped after several doses of anti-seizure medication. They had prepared us for the possibility of putting Emily on a ventilator if the seizures didn't stop because they would have to go to different medications which could affect her breathing. We prayed like we had never prayed before. During all this, Grace was visibly upset. It was heartbreaking. She kept asking about Emily. She was very much in tune to what was happening and she could sense the seriousness of the situation. One of the paramedics who brought us in, was kind enough to try to distract her with coloring books.

Monday afternoon, St. Jude arranged for her transfer. We had to wait for a critical care ambulance crew even though the hospitals are a couple of miles from each other. I was teasing Emily that we were in good hands because we had an 'all girl' crew!

The original ER tests showed acidosis so it was thought that Emily possibly had an infection going on. She was immediately started on the 'big gun' antibiotics along with the anti seizure meds. A CT scan was done and it was negative for any abnormalities. At St. Jude, an MRI was done and it showed a fluid accumulation in the brain. They immediately did a spinal type to fule out an infection. The doctors, including a neurologist, diagnosed PRES, based on the MRI. This is Posterior Reversible Encephalopathy Syndrome. This is apparently caused by the anti-rejection drugs which were immediately stopped. Meanwhile, Emily started spiking a fever which got as high as 105. She was fire engine red and covered in a rash again from head to toe. Again, it was thought that this was medication induced. She was pumped full of steroids which gave her some immediate relief. An EEG was done and it did show some slowing but the neurologist has assured us that this will resolve in time. The body should absorb the fluid. Emily was also dealing with some high blood pressure issues, again, caused by medication, and it was felt that this could have contributed to the seizures. She was placed on medication to control the pressure.

For several days, Emily was dizzy and very unsteady on her feet. She is regaining some strength and the dizziness has subsided. I am terrified to leave her alone. We make sure that someone is right next to her when she walks. She still has some headaches but not nearly as bad. We thought that it was a good sign that she remembered her computer passwords (she had changed them hours before the first seizure). She has no memory of that night. We are told that the events are erased - which is a good thing. I know it is a little unsettling for her. It was a horrible, horrible ordeal and I certainly want to forget it. Sometimes, when I close my eyes, I see her face as she is seizing and it is a nightmare.

Since being moved to the fourth floor, Emily has done well. We were thinking that she would get discharged yesterday BUT, she started spiking a fever again. Cultures were drawn and antibiotics were restarted. She has been suffering with severe stomach pain and today we learned that she is positive for C-diff. She had never had this so we were quite surprised. Another antibiotic was added and hopefully, this will be under control in the next few days.

We talked to the lead doctor today and he said that from a transplant standpoint, she is doing well. He is going to begin to wean her off the anti rejection drugs and one of them, they have stopped altogether. He doesn't think this will set her back any. He did acknowledge that five seizures in a row is not very common. They do plan to repeat the MRI in another week or so. We are praying very hard that the condition resolves quickly.

I know so many people have been vigilant in praying for Emily; especially during this latest crisis. I hope that at the same time, you PRAISE GOD for the miracles he continues to bestow on her every single day - even on the bad days! He is right there with her; always; getting her through. I know with all my heart that GOD was with all of us May 8, which also happened to be our wedding anniversary.

Yesterday, I was so touched that even though she had been through the ringer this week, Emily still managed to make me a little something for Mother's Day. She apologized for us having no life - having to stay here with her all the time. I wouldn't want to be any place else.

We had a surprise visitor this week and it was great to see someone from home. Mike Ulm was here on business and made time to see us. Mike's wife Terri, also happens to be our favorite nurse at ACH. Mike was also Emily's first soccer coach! The Golden Eagles was their team.

Again, celebrate and REJOICE with us, the miracles of each day. Please continue to pray for our most precious daughter's healing.

Friday, May 12, 2006 2:10 PM CDT

(Day 42)
Just wanted to let everyone know that prayers are being answered every minute. Emily has been moved out of ICU and on to the fourth floor. Your FAITH has raised her up and will continue to do so.
Also, happy 40th birthday to my baby brother, "Jimbo"!!!

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Thursday, May 11, 2006 9:40 PM CDT
(Day 41)
Through the GRACE of God, Emily continues to improve. We are hoping that she will be moved out of ICU and to the fourth floor sometime tomorrow. There were some new issues today with her blood pressure going up and her oxygen stats going down. They are 'fine tuning' everything. I will write more details later. Please keep praying!

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Wednesday, May 10, 2006 7:15 PM CDT
(Day 40)
Emily remains in ICU but has shown improvement. Please continue to pray!

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Tuesday, May 9, 2006 4:39PM CDT
(Day 39)
What Steve describes as the second worst day of his life - (the top one being the day Emily was diagnosed), Sunday night, Emily was taken from our apartment by ambulance to LeBonheur Children's Medical Center, after having had a seizure. She had four more seizures in the Emergency Room before being transferred to the ICU unit. Yesterday, she was brought by ambulance to St. Jude's ICU where she remains at this time. Her condition has improved but she remains in very serious condition. So far, it appears to be a drug reaction.
If ever Emily needed to be lifted up in prayer, the time is now.

Thursday, May 4, 2006 3:53 PM CDT

(Day 33)
Emily saw the doctor Monday and it looks like she has some GVHD starting. This is graft vs. host which is the donor marrow attacking her body. Believe it or not, they like to see some of this flare up because they believe it makes the engraftment stronger. It also helps if there is any residual disease which didn't get killed off by the chemo and radiation. The trick is keeping it under control. They prescribed a mild oral steroid and some topical cream for the rash. So far, it is working. Emily also got IVIG on Monday and will continue to get this blood product every Monday. It is antibodies that help boost the immune system.

Overall, she is doing well. Her counts are very good and she is ONE HUNDRED PERCENT DONOR MARROW! The doctor also felt that what showed up on the CT scans looked to be consistent with what he would expect from someone who just went through transplant. Emily is still on IV nutrition but has started to eat a little. It is a slow process. They have tried to cut back the number of hours that the pump runs but her blood sugar is running high from the steroids so they have to keep the infusion at 24 hours. That isn't so fun because she has to carry the bag and the pump around in a backback wherever she goes. She is moving in the right direction and I know that because of all of your prayers, she has been lifted up. She is a bit homesick but we are trying our best. What teenager wants to spend this much time with their parents though?

Thanks to Matthew Barber's students in North Carolina for all the letters. Thank You to St. Mary's school in New Jersey; Robyn Lubisco for the YALE t-shirt (maybe one day??); Hendry Investments in San Antonio for the Cinco de Mayo package; The Huff Family for the pictures - we were touched; Mary Bronk for the bracelets; Mrs. Bosker and her students at Ridgecrest Elementary - the picture was priceless! The letters too! Kanyon for the GATOR stuff and for getting everyone together to write! Emily misses all of you! Cousins Joey and Jennifer and Janice Hess for the books on tape and all the other goodies. We loved seeing the kids - all of them! They got so big!

Tomorrow is another day at he hospital which includes a Pulmonary Function Test again. Please pray that Emily's lungs have improved. Always, continue to pray for Emily's healing and for all these brave children who fight the fight.

Sunday, April 30, 2006 8:20 PM

(Day 30)
We are at Target House! Emily was discharged yesterday after finally managing to keep her fever away for 24 hours. She is her own nurse again; flushing her lines, while I hook up the TPN (nutrition) every night. We have a mini IV pole and a backpack to carry the pump around in when we leave the apartment.
So far, Target House has been a smooth transition except for the number of pills Emily has to take everyday. There are nearly 50! Today, Emily actually asked for food. She is finally eating tiny bites here and there; not much but a start! Remember, she hasn't eaten in over five weeks!

They gave us the day off today which was very nice. The weather was supposed to be stormy but it turned out to be picture perfect. Emily's cousin Victoria and Aunt Susan came up from Ft. Lauderdale for the weekend. They were good medicine! Aunt Susan's parents, Ed and Pat Santos were here too and today they brought us barbecue. We sat outside and ate on the picnic tables under Target House's backyard pavilion. Emily didn't eat anything but she did come out and sit with us. We were all sad when it came time for them to leave for the airport. It was so nice to see them and the timing was perfect. I could see a change in Emily in just the couple days they were here.

Tomorrow we will be in clinic and at the hospital for most of the day. Emily gets a three hour infusion of IVIG and will see the doctor in clinic. We have quite a list of questions. The CT scans done on Thursday, did not come back "normal". There was a whole list of remarks and comments regarding the right kidney, spleen, liver, lungs, and heart. Could be something/ could be nothing but I definitely want these things addressed. At the very least, I want a repeat CT because the one done previous to this (ten days before), was supposedly fine. We chose not to let these results spoil the discharge nor our weekend with family.

Again, many thanks to all those who have managed to brighten Emily's day in some form or another. Thank you to cousin Briana and Dave for the beautiful cross and prayer book; the Ceraolo's for the great package; Thank you to Laura Langton for the "Have some fun" card! Emily is looking forward to it; Greg Covey for the Sodoku puzzle book and also for saving all those Wendy coupons for us; Mrs. Browne and the Cancer Support Group at SPHS, who did an awesome job at St. Pete's Relay for Life this weekend. We got the pictures you sent and we really appreciate it; and last but not least, thank you to the Schoeller Family for everything!

A very special thanks as well, to Nana and Poppie, The Vaughan's, Parmalee's, Muley's, Mrs. Barber, Jane Matthews, The Previtera's, and all the Foley Family for making Catherine's Confirmation so special.

Although we got to leave the hospital, lots of children are still there and many are not doing too well. Please keep Emily and all these ANGELS in your prayers. We continue to take this day by day and ask God for the strength to get through the present.

Wednesday, April 26, 2006 9:05 PM CDT

(Day 26)
I guess we won't talk about Target House anymore because everytime we do - we jinx it! Emily woke up spiking a fever again today. More cultures and more drugs switched around. She is starting to feel homesick and misses seeing her family and friends. At the hospital back home, she constantly had visitors. We are trying so hard to keep her motivated. She has every right to feel bummed every once in awhile.

The good news - preliminary report on the bone marrow is that it looks good! The final studies won't be available for several days but we are HOPEFUL!

Catherine makes receives the Catholic Sacrament of Confirmation this Saturday. Please keep her and her friend Katelin in your prayers. I know this has been a journey in FAITH for Catherine. I know her FAITH has been made stronger and I pray God continues to bless her. May she receive the gifts of the Holy Spirit. God Bless Katy Foley, Catherine's sponsor. She has been responsible for getting Catherine to Confirmation classes and to Church. She has been a surrogate to Mom to Catherine when Catherine needed her most. We are thinking of all of you this weekend!

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Tuesday, April 25,2006
(Day 25)
The good news is that the antibiotics appeared to have worked right away. She has been without fever since the first dose. So far, the cultures have all been negative. If that remains through tomorrow, she will get to go back to Target House tomorrow afternoon.

Today was a busy day. It started with a pulmonary function test which was rescheduled from yesterday because she couldn't stop barfing long enough to do it. The anti-nausea medicine knocked her out and she slept for hours - thank goodness because then she wasn't barfing. Her poor tummy hurts so bad. The numbers on the PFT were way down from the one done before transplant. The good news, breathing treatments/excercises can get the numbers back up. She now has two separate breathing devices she must use hourly to 'condition' her lungs. Exercise also helps. She is off oxygen and is holding her stats on her own. We did have a scare last night when her blood pressure shot way up but a couple of doses of yet another medication, brought it down. They think it was drug induced. No doubt - she is on quite a cocktail of meds!

The bone marrow biopsy was done today and we should have the results of all the tests in about a week. They will do a cytogenetic study as well as a test for MRD. This is VERY important because it detects ANY leftover disease. PLEASE PRAY THIS TEST COMES BACK NEGATIVE.

Our blessings come daily. I am behind in my THANK YOU's but know that all of you hold a special place in my heart.
A special THANKS to Catherine and all her friends; especially her best friends Jamie and Katelin (in no particular order girls!), Ed and Katy Foley, and all the players and parents of the Gulfcoast United Girl's Soccer Team. Thanks to many of our neighbors and friends in Seminole, FL and at our church, St. Jerome's.

To be able to say things are going "Good" is certainly something to THANK & PRAISE GOD for!

SUNDAY, April 23, 2006

Target House was short lived - Emily's back in the hospital. She sounded tight in her chest yesterday morning when she woke up. The doctor did hear wheezing so she started using her inhaler. This morning she woke up sounding tight again and when we brought her to clinic, I asked that she have a nebulizer treatment. They did a chest x-ray and it turns out she has pneumonia. She started running a fever right then! She is back on antibiotics - three different ones and she is also on oxygen. We are trying really hard to stay positive here. I do believe it was caught in time and thankfully, it happened now and not last week when she had NO counts. Another plus, she does have white cells to fight so pray they fight, fight, fight.


SATURDAY, APRIL 22, 2006
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Steve's on his way to the hospital to pick us up! Emily is getting discharged to Target House. Today, is a day of Thanksgiving!
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Friday, April 21, 2006
(Day 21)
We are hoping and praying this is the 'turn around' day. Emily's counts have been inching upward and today they took a leap forward! It looks like engraftment! For more than a week now, she has been running this fever, but now she hasn't had one in several hours. She is still covered in the rash which has taken on several different appearances. The biopsy came back that it was an allergic reaction to one of the drugs. They haven't been able to pinpoint just which drug it is. They have changed some things around but most drugs are necessary right now. It looks like she'll just have to live with it for awhile. Unfortunately, the rash also itches but today, they've finally found a medicine to keep it under control. They started low dose steroids yesterday to help with the rash. She also had another blood transfusion. CT scans showed an enlarged spleen and sinusitis but nothing else thankfully.

Emily will probably be discharged to Target House in the next few days. Maybe even as early as tomorrow! She will still have to come to the hospital everyday but at least everything will be outpatient. One step closer to HOME!

Tonight is Relay for Life in Seminole. A GREAT group headed by Catherine and her friends Jamie and Katelin, have been working diligently to have Emily's Team, The Chemo Crew, represented. This is the team's fifth year doing Relay. We are so proud of you! We can't wait to see pictures. Although we won't be with you physically tonight, we will be there spiritually - celebrating those who have survived and praying for those who continue to battle. We remember all those no longer with us. God Bless you all!
Thanks to everyone who helps keep her spirits up! Thank You to Connie and John Stassi, CeCe Hay, and all of you who have sent cards and letters. You have surely lifted her spirits.
Again, we appreciate your continued prayers - each day is a miracle.


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Tuesday, April 18,2006
(Day 18)
Still no results from the biopsy yesterday. They did put Emily on official isolation though because of the rash. This means that everyone that comes in contact with her must wear a gown, gloves, and a mask. She isn't allowed out of the room either.

The good news...her counts were up some today. We are hoping and praying that engraftment has begun! She is still running high fevers and feeling pretty bad. Today she was up around 103 degrees. She has also been having some splitting headaches and blurred vision. Today, she did try to get out of bed for physical therapy but after realizing she was just too tired, I asked the therapist to stop. Emily is just so weak. She didn'y feel like her pain pump was giving her any relief sp she asked that it be taken away. Now she is on morphine every four hours.

Today, Emily was excited to receive a call from her favorite Dr. B. We do miss him! The doctors here are wonderful too but Dr. B is Dr. B! I was so glad that the on call doctor last night was so thorough. He kept coming in and checking on her.

I had also wanted to mention that both Emily and Grace submitted artwork for the annual teen art show here. Grace did an abstract using orange, red and yellow and she called it "Emily's Boo-Boo". It was beautiful. We hope to post a picture. Emily submitted four pieces; all paintings. Stephen and I were fortunate enough to visit the art show. Many of the submissions were incredible. There was so much talent. Some even brought tears to my eyes!

Easter was very quiet for obvious reasons. The nurses left baskets at each patient's door and they even left a basket for Grace. Everyone knows Grace! I am so glad she is here for Emily. We do miss the third one of the trio - Catherine. We hope to see you soon. Target House had an Easter Egg Hunt but Grace wasn't really interested. She did participate in one last week but I guess one was enough for her.

Thanks to everyone who sent cards and letters. Emily got an Easter Box from some very special Angels. Thanks to cousin Julie Devine's class in New Jersey for all the special cards. I can't tell you how much the mail makes Emily's day - cards from every state! There are so many good people out there - taking the time to write wonderful words of inspiration and encouragement. Thank You for these gifts!

We continue to pray that tomorrow is a better day and we THANK GOD for getting us through today. Please continue to pray!
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Monday, April 17, 2006
(Day 17)
Today is day 17 and it was certainly not a good day. Emily started running a fever on Friday night and it was pretty much downhill the entire weekend. Saturday, she had to go back on IV meds because she could not control the barfing and Sunday, she received blood and platelets. She is currently covered by a rash from head to the bottom of her feet and we have had numerous opinions as to what it could possibly be. Today, she has been burning up and aches all over. Basically, she has been miserable. This morning, they put her to sleep to do a 'punch' biopsy of one of the rash areas. We hope the results will tell us something by tomorrow. It's pretty obvious something is going on and once again, her blood has been cultured. The cultures done previously have all been negative so far. They upped the dose of the anti-viral in case this is viral in nature.
Right now, I am watching her sleep, covered with ice packs, shivering, trying to bring the fever down. It is such a helpless feeling. As I sit here praying she gets through the night and that tomorrow is a better day, I beg you to pray as well.
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Saturday, April 15, 2006
(Day 15)
Over these past few days, Emily has seemed to hit a small rough spot. She has been having lots of nausea, especially when it comes to swallowing pills. On Wednesday, they switched several of her intravenous drugs to pill form, something Emily does not like at all. She is taking around twenty pills a day, which has been very upsetting to her stomach. She’s been throwing up frequently and takes hours to get each cup of pills down. In a way, Emily is almost dreading the move to Target House. In order to be discharged from the hospital, Emily must be able to take all her meds by mouth. This equals out to around 50 pills daily. Yesterday, they taught us how to hook up the TPN(IV nutrition). Emily will still need this at Target House. They gave us the small infusion pump which Emily will be using and is able to carry around with her in a small backpack. She will need this until she is eating at least half her daily calorie needs. This could take a month or more, considering she hasn’t eaten in over three weeks.

Today, Emily has been feeling very “cruddy”. Blood cultures were drawn this morning when she woke up with a fever.
A red bumpy rash has started to form on her hands and wrists. The doctors speculate that it may be an early form of graph versus host but haven’t started treating her with anything. They are “watching it” for now.

Yesterday, Emily reminded me that it was her 1/2 birthday. She wanted to try something sweet to eat so that afternoon, Stephen went out and bought some mini cupcakes. Emily was actually able to eat one but unfortunately, she threw it up later. Ironically, the day was otherwise made special with the arrival of several packages in the mail. Emily was very excited. Thank you to Jennifer Hines and friends for the scrapbook supplies, as well as Angel Hugs who sent us a whole box of Easter goodies.

We would also like to thank Peggy for the “Stitch”. He’s always been a favorite! Thank You to cousin Michael and his class for all the cards and letters. Thank You Karen and your students at Mildred Helms Elementary in Largo. We loved reading everything all the kids wrote. It gets terribly lonely here so the mail is very welcome! We had some good laughs from the articles Meghan sent; enough to even recycle them and mail them back to Catherine and Katelin.

This Easter Weekend, I pray that through all of Emily's suffering and all the suffering of these precious children here, people come to know Jesus. I know in my heart that her days of Glory; their days of Glory, are ahead!

Miss You Catherine!!! Sending you BIG HUGS!

Thursday, April 13, 2006 1:23 PM CDT

(Day 13)
Today Emily has been getting platelets and blood. This seems to be the norm every few days. The Physical Therapist works with her daily, increasing her workout and hopefully, her stamina. She is still very weak and tired. Several of her medications are being gradually switched from IV to pill form, in preparation for her when she can finally be moved to Target House. Tomorrow someone will come train us to prepare the IV nutrition and show us how to do the infusion. She still isn't eating so she will remain on this until she can take in at least half her daily caloric requirements. She is still suffering from burning in her hands and feet so the neurotin dosage was tripled. They are now trying to wean her off the pain pump. Apparently, it is one of the anti-rejection drugs which is causing the burning. They have changed the timing of this infusion so she is getting it as a continuous 24 hour drip in hopes that it will lessen the burning sensation.

Her spirits are good. She continues to work on crafts as well as her school work. We were able to secure a 'visitor's' library card so that we could check out one of her required reading books on CD. Listening is much easier for her than reading - especially the fine print! I was having trouble myself!

Thanks for all the mail. She loves opening the cards and letters. Thanks to the Devitz's, Mrs. Smith, Mrs. Brown, The Parmalee's, The Figley's and The Evans Family, for all the goodies.

A special THANKS to all those who have stepped up to do Relay for Life in Seminole, in honor of Emily. They have kept her team name, The Chemo Crew, and are busy raising money to fight cancer. There is an online donation link above. This would have been Emily's fifth year participating and the event has always meant so much to her. She has been instrumental in raising thousands of dollars to fight cancer.


I am asking that everyone PLEASE PRAY for engraftment! I appreciate all of you who take the time everyday to think about Emily and say a little prayer for her.

Sunday April 9, 2006

(Day 9)
Today is day nine and for the most part, Emily is doing okay. She still has no counts but we pray that we see some signs of engraftment in the next week or so. Today Emily had a field trip downstairs where they x-rayed a red, inflamed area on the bottom of her foot. It looks like a cellulitis and she was started on antibiotics right away. Her lines were cultured as well because they can't take any chances. She has absolutely no immune system. I know God is holding her close and guiding the doctors in her care.

Yesterday, she was happy to visit with Poppy and Nana for a few hours. They drove over from Nashville where they are staying with Aunt Joann and Parker. We are hoping to see them again before their return to FL. Emily was dissapointed when it was time for them to leave.
We are so glad to have Grace here with us. She keeps Emily company. There are so many siblings here who have made incredible sacrifices of their own. They too have given up school, friends, and sports and all their other activities. Families do what they have to do and pray it will work out. St. Jude does their best to make it easier but it is still so very difficult. So many times, a child has asked Grace to join in a computer game or interact in an activity. This is her new peer group and they have welcomed her with open arms.

We have missing Catherine! Although we talk several times a day on the phone, it's not the same. We are hoping that Matt can come from Boston the first week in May. Stay well Matt! We miss you too! Grace keeps asking for her cat, Abigail. A big thanks to all the neighbors who are taking care of her.

Yesterday was a special day here at St. Jude. They had a memorial service for all the children who had lost their battle with cancer this past year. The ceremony concluded with butterfly balloons being released into the wind. There were way too many. My heart goes out to these families. Since this is a research hospital, each child brings another child one step closer to a cure just by being treated here. Every child is on a study or clinical trial of some type. Please keep all these children and families in your prayers - and continue to pray for a cure! As Danny Thomas (who founded St. Jude) said, "No child should die in the dawn of life".


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Friday, April 7, 2006
(Day 7)
Emily has been ‘holding her own’ so to speak. She is in quite a bit of pain from the mouth sores. The linings of the mouth, throat, and stomach, are the first to be worn down from the chemo and radiation. She is on a continuous drip of pain medication and she can boost it whenever she is uncomfortable. The dosage has been increased several times. She still isn’t able to eat or drink but in the past two days she’s managed to swallow pills. Her nutrition is carefully customized each day. She gets the necessary nutrients through her IV. We laugh at the two bottles of lipids (fats) that she also gets everyday. Who would want fat? The body needs this though.

One of the anti-rejection drugs has been giving Emily the tremors. She has also been complaining of a burning pain in her hands and feet. For this, the doctor started her on a neuropathy drug that will take several days to kick in. She has tried holding frozen water and ice packs but it doesn’t give her much relief.

She has also been getting platelet infusions almost daily. Tomorrow she will receive 1-2 units of blood. She gave us a little scare today when she couldn’t catch her breath. She had just received platelets and had been using her breathing device when she started the tremors and a coughing episode. The doctor came right in to check her. They did hear some wheezing and attributed it to an asthma episode. Afterwards, Emily began throwing up. The nurse brought in some nausea medicine which caused Emily to fall asleep for several hours.

A steady stream of mail has been coming. Thanks to everyone who has sent cards and letters. She got a package from an elementary school in PA which contained a stack of drawings along with little notes. They were so cute! Thanks Jane S. for the stickers to decorate the windows. Emily actually got out of the room to stick them on the outside of the windows. This way, the other kids who walked by the room could enjoy them too. Thanks to Sarah & Molly for the gift cards and Victoria for the fast cash! The Foley’s sent the coolest balloons and gift basket. The paper flowers are tulips and certainly brighten the room. Thanks to one of our Caringbridge and St. Jude families, the Chungs. Emily loved the paint set and the bandanas were the coolest! Aunt Mimi stocked me up with twizzlers and trail mix before she left and I’m loving them both. Emily loves her cd’s and all the other goodies you stuffed her drawers with. Yesterday, she was disappointed to hear that she slept through a call from her favorite Doctor B! I know he’ll be checking on her again and hopefully, she be awake then.

I know there are some wonderful ANGELS on the homefront. I literally don’t have to worry about a thing and you don’t know what a priceless gift this is. Thank You Jane and all your helpers.

Emily is hoping to see Nana and Poppy tomorrow when they drive over from Nashville.

Today is seven days post transplant and there is no doubt that God is holding her in the palms of his hands. She has been abundantly blessed. We take it one day at a time. Again, please continue to pray for our precious daughter.

Tuesday,April 4, 2006

(Day 4)
Catherine left yesterday and we sure do miss her! It's has been awfully quiet around here. Not only does Emily have the best sister, but I do too. Aunt Mimi (my sister Mary), accompanied Catherine to St. Jude. Aunt Mimi has been in the trenches with us since day one back in 2001. For this, we are extremely grateful. Catherine will continue to feel better under Aunt Mimi's watchful eye. I know Catherine's "Spring Break 2006...", will surely top anything the other kids did. Nothing compares.

These past few days, Emily has really been feeling dumpy. The radiation and chemo have caused some very nasty mouth sores. She hasn't been able to eat or drink for more than a week now and was started on IV nutrition last Friday. This afternoon, she was hooked up to a pain pump. The physical therapist has been trying to get her out of bed to either sit in the chair or walk around the floor. She has done well with this, even finding a new hobby...painting! She painted three very brightly colored abstracts on canvas. They certainly brighten her room.

Emily's immune system has finally reached zero. She has seven pumps going and a maze of tubing to infuse everything imaginable into her body. She really needs prayers to get through the next couple of weeks. Everyday, she asks if any mail came for her. Please feel free to drop her a line or draw her a picture or even share a joke with her. She hasn't been on the computer much nor can she talk to take phone calls. I do read her the entries in the guestbook and I know it is very comforting to her that so many people are thinking of her and praying for her.

Thanks again for everyone's continued love and support. A special THANKS to Aunt Mimi, Uncle Hack, and the Foley's for watching over my 'Kitty'.


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Saturday, April 1, 2006
(Day 1)
Yesterday was a very long day! Catherine did G-R-E-A-T!!! When Catherine woke up in recovery, the first thing she asked was "Did I score?" Boy did she ever! All the doctors were very impressed with her "SUPER" marrow. It turns out, that she gave Emily the equivalent of a dose and one half. On top of this, the marrow was packed with the right kind of cells. It was just incredible. The doctors couldn't be more pleased with the quality. Just goes to show you what the ketchup diet can do! (Everyone knows how much ketchup Catherine uses!)

Catherine was pretty 'loopy' all day from the effects of the anesthesia and pain medication so to everyone she called and asked "Do you like me?", thanks for bearing with her!!! A BIG HUG to her Gulfcoast United Soccer Team who is playing a tournament in Pensacola this weekend! She loves you guys and she couldn't ask for better teammates or friends. All of you have been so supportive. I heard that all of you wore #13 today - we were touched.


The marrow was infused over five hours and Emily did fine. She was up painting on canvas afterwards and was really doing well. Today started off rough though. The effects of the radiation and chemo are beginning but we are hoping and praying that it won't be long before Catherine's "super" marrow takes hold (engrafts). Catherine is walking gingerly today. She still needs to rest and take it easy. Her hemoglobin did take a plunge but with her healthy marrow, she should continue to recover. I am just in awe at how courageous she is. Her LOVE is so deep and truly unconditional. She radiates God's love. I am so blessed to have a truly wonderful daughter. Her siblings, especially Emily, are also blessed to have the best sister!

Emily continues to be in God's hands. I know that we have been witness to so many miracles - especially yesterday. Please continue to pray.

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Friday, March 31, 2006
(Day 0)
Catherine is in surgery now. I have never been more proud of her! They let me walk with her into the operating room but I didn't have the courage to watch her get put to sleep. I know she was scared but she put on a very brave face. Today, she is my hero!

Emily is upstairs sleeping. Her counts are diving as expected. She is on MANY medications to manage all that's going on. She isn't feeling good but she is still trying to get out of bed and do all the things she needs to do to get out of here. Last night was very emotional. This is the beginning of a new chapter for her.

I will try to update later. We expect that Emily will get the marrow infusion by early afternoon. If you think about it, please pray for the girls during this time. Right now, they are both in God's hands.

Tuesday, March 28, 2006

Emily finished the cytoxin, amazingly using the barf bucket once! She has been on round the clock nausea medicines since we've been here and is halfway through the radiation. Yesterday, she slept most of the day but did ask for food when she woke up. She really isn't eating much and will begin liquid nutrition as early as Friday. Today, however, was a better day. She actually took several walks around the floor. Her and Dad found a Pac Man Game and are getting addicted. I hope so! At least it will get her out of bed. She also did a few minutes on an exercise bike. It is so great for her to be able to move about the floor rather than be cooped up in her room the entire time. Emily even started school today. The first assignment was a vocabulary test. Her attitude is great and so is her sense of humor. She keeps finding all my mistakes in the updates (like writing that Grace was in a storage locker.) Just to clarify from the last update; Grace has been playing in the parent room, not the locker! lol!

Catherine arrives tomorrow. We can't wait to see her. Her schedule starts out bright and early Thursday morning. My sister Joann is driving over from Nashville on Friday for the big day!

Every transplant room on this floor is full. There are children waiting for a room to open up. We have met families from Lebanon, Chile, Venezuela, Syria, and most of the 50 states. Each child has a story. Please pray that God holds each and everyone of them close.

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Saturday, March 25, 2006
A very HAPPY BIRTHDAY to Matthew who turned 24 yesterday. Happy Birthday to Katy Foley also.

This past week has been packed with appointments. It is very encouraging to know they are so thorough. Emily’s marrow is free of cancer cells and all the tests have come back good. Considering the all she went through back in February, this is truly a miracle. It is the best we could hope for going into transplant. She has been feeling good and getting stronger.

Daddy arrived on Thursday and last night, we were actually able to squeeze in dinner at a restaurant. The most difficult day was Thursday when we had to sign the bone marrow transplant consent form. It was eleven pages long and the doctors went over each and every word. There were pages full of side effects and complications and then at the end, you get to the "benefits" paragraph. Essentially, it says that you can live! I think this phase of the preparation was the hardest for me. I didn’t care to hear any of this and I certainly wanted to protect Emily from hearing it. I could barely see the signature page through my tears and then Emily said “And you want me to sign this?”

Thursday was also the day Emily had to do the radiation simulator. Needless to say, she hated it! She had to lie on a revolving table before being covered in a bag. All the air was then sucked out of the bag and she was "vacuumed packed." While the table was rotating, Emily said she felt like a rotisserie chicken. She wants nothing to do with this but unfortunately, it's a necessity. All of her bone marrow has to be killed. The protocol calls for two days of very strong chemo and four days of total body irradiation. Once Emily's marrow is killed off, the rescue will be Catherine’s healthy marrow.

Emily was admitted last night. She is in room 4015. The room itself is intimidating. You have to push a button to open the glass sliding doors into a ‘decontamination room'. Here is where you wash up. Then you push a button to open another set of sliding glass doors that lead to Emily’s room. She has a special air filter over her bed and the room air pressure is positive. This means that no air from the outside, including hallways, will ever come in her room. The room is cleaned twice a day and she may leave the room and walk around the floor but only if she wears a particulate mask. The entire floor is for bone marrow transplant and is restricted access. She is allowed visitors but only two in the room at a time. There is a parent room adjacent to Emily’s room. It is small with a restroom, TV, couch and a couple of chairs. There is also a locker for storage. Grace has been hanging out in there. There is a window and an intercom so we can keep an eye on her and she can check on us. It was tough coming here last night. There were a few tears. Emily is so brave though. She is going to do what she has to do to get through this. My biggest fear is that when her counts are gone, she is a sitting duck for infections. The doctors seem to be proactive and have already started her on some preventative measures. Catherine arrives Wednesday, accompanied by Aunt Mimi. She will go for labs on Thursday and is scheduled to have her marrow harvested in the operating room on Friday Morning at 8 am. The marrow will then be ‘processed’ and infused into Emily over 4 or 5 hours. Then we wait for it to engraft. Throughout her entire life, Catherine has always had the biggest heart. On one of her birthdays when she was 3 or 4, she had a party and got tons of presents. She picked out a couple and then on her own, said give the rest to the poor kids. She would give you the shirt off her back and now, she is giving her sister the gift of life. Catherine, YOU ARE SO SPECIAL!

Again, THANKS to everyone back home. So many have come forward to help us out. The Foley’s are Catherine’s new family and are taking such good care of her. They are also taking care of our yard and pool. Jane Mathews is looking after our house and more! We basically just left it as is with lots to be done and she graciously came forward and took responsibility for taking care of things. Thank you to the LaPera Family for the long distance phone cards. We will use them! Thanks to all our family and friends who continue to love, support, and pray for us. To my extended family in Syracuse, NY, all of you have been incredible. We truly appreciate all that you have done.

Although it still doesn’t seem real...this is it. We are here and there is no turning back. I feel at peace with this and I know that no matter what, Emily is in God’s hands. There is a boy here who is 13, and is facing some very difficult times. He and his family are facing some very tough decisions and he told his mom “He is here”; meaning God is here. I feel the very same way. I felt it on the plane ride here and even more so, when we walked through the front doors of St. Jude.

Everyone keeps asking what we need. We need people to be faithful in prayer to help us get through what is yet to come.

Tuesday, March 21, 2006

Emily had surgery yesterday and it was pretty rough. She had the double port removed and the Hickman Line placed. She was very, very sore! After surgery and a couple of other appointments, it was move in day at the Target House.
Thankfully, we thought ahead on Sunday and used Aunt Joann's car to move most of our luggage over to the hospital in anticipation of Monday's move. When we woke up yesterday, it was raining and cold so we had to take the shuttle but we only had a few bags. When the shuttle picked us up from the hospital, I had Emily in a wheelchair still feeling the effects of the anesthesia and pain plus I had 11 pieces of luggage. Grace actually helped push Emily and then some very sweet mother's helped me with our luggage. Everyone was so nice and helpful. It was a lifesaver! To top it off, we had to go back to the hospital at 5pm and 11pm for IV infusions of antibiotics. We got back here after midnight and needless to say, we were pooped! Today, we were up early but had a light day. Emily stayed at the hospital an extra couple of hours doing crafts in the lobby. Grace even made a picture frame that turned out really cute. We were able to slip in a quick shopping trip to the grocery store. It was hard for me to shop without my coupons plus, TN taxes food! The tax rate here is nine percent too. We were told that if we cross the bridge to Arkansas, things are cheaper.

Target House is beautiful. It is funded by a 28 million dollar grant from Target Corporation. Tiger Woods sponsored the most incredible library and Amy Grant sponsored a music room and home theatre. Many other celebreties have donated as well. We have a two bedroom, one bath, fully furnished apartment about three miles from the hospital. There is a shuttle every half hour. In addition, there is a main dining room, teen room, play room, playground and more. The Catholic Diocese of Memphis donated the land and it is part of a compound that shares property with a Catholic High School and Middle School. There is also a church, assisted living facility and elderly housing complex on the property. It is gated and very secure. There is transportation to the grocery, drug, and Target store. They thought of everything.

The rest of the week is jam packed with appointments and Emily will be admitted Friday night. The conditioning for transplant will begin on Saturday. I really feel like we are in the right place. Already, we have met some very wonderful people. There is an incredible feeling of FAITH and HOPE here - you have to experience it. Although, I don't wish this on anyone. We met one of our caringbridge families today - she sought us out and welcomed us to Memphis!

Emily can get mail. The address is posted above. Always, continue to pray for her and all children who suffer. Again, THANKS to everyone who is helping us out. We sincerely appreciate it.
Love,
Tricia

Sunday, March 19, 2006

A BIG HUG AND KISS FOR CATHERINE WHO TURNED 15 YESTERDAY. WE LOVE YOU CATHERINE AND WE MISS YOU. HAPPY BIRTHDAY!!!

We just want to THANK everyone who came out this weekend to support the Bay to Bay Race and the Casie Snow Fund Bone Marrow Drive. We heard it was a huge success! We hope and pray that HOPE was provided to families who are desperately waiting for matches. A special THANKS to those who came out and walked/ran/volunteered and registered in honor of Emily. Christian Homme from Seminole High School was the first at the finish line for the 5K, wearing Emily's Team Bandana and Christa Benton won the 12K, also wearing Emily's Team bandana. A special thanks Katy for emailing the pictures. We wish we had been there. Thanks to everyone from All Children's, Seminole, Gulf Coast United Soccer, St. Petersburg High School, Seminole Middle and Seminole High, who came out to support the drive. Thank you to Wendy and Al Johnson, Aunt Mimi, Poppy, Jane & Roc Snow, Cathy Clasen and all those who participated. Also, Billy, thanks for coming out. Everyone told me what a smart, sweet boy you are! I definitely see IB in your future! Seeing the pictures from the event was good medicine. We are so proud of all of you!

Aunt Joann drove home today. It was sad to say goodbye and we are feeling a little bit lonely now. Fortunately, we were able to enjoy Memphis this past weekend. We ate out, shopped, and even went to Graceland! We can not believe the true Southern Hospitality here. The people of Memphis are great! We have the best story of kindness from world famous Rendezvous Ribs. Some really great people work there! After noticing Emily's bandana, the manager went out of his way to make sure she had a great time. God Bless him and all the staff there!
Tomorrow will be a very busy day. Emily will be having surgery in the morning, followed by our move to Target House in the afternoon.
Please, keep Emily in your prayers as well as all these children and families here and back home at ACH.

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FRIDAY, MARCH 17, 2006
Grace didn't make the plane on Wednesday so she has been hanging out with us and keeping us company all week. Emily's had a billion appointments. It would be easier to list what specialist she hasn't seen or what test wasn't performed! Today though, it was audiology, nutrition, and a surgical consult. She has tomorrow off and has to go for labs on Sunday. She'll have surgery Monday morning to remove the ports and insert another type of central line, a Hickman Line.

We were very anxious to fill out the paperwork when Emily found out about the Hobit3 Study. It is a study being performed by the Psychology Department in order to determine the beneficial effects of massage therapy on bone marrow transplant patients. Fortunately, for both of us, the computer randomly assigned us to the branch we wanted. This means we will both be getting frequent massages throughout Emily's stay at the hospital. Emily was crossing her fingers because as in every experiment, there must also be a control group. These patients would not receive massages therapy. Emily will also be exposed to 'humor' in this experiment - and will be visited by a "comedy cart" once a week. We can't wait to find out what that is!

We ran into our primary doctor in the lobby today and he is very pleased with the results of all the testing so far. It really is the best case scenario for the worst case scenario.

Aunt Joann is driving over from Nashville today and we have a list of places for her to take us. Target will be one of our first stops. There are some must have items to make life easier. On Monday, we move to our apartment over at Target House. It is several miles from campus but there is a shuttle service. Our biggest dilemma will be moving all our junk. Emily has already accumulated quite a bit in just a week!

REMEMBER THE BONE MARROW DRIVES AND BAY TO BAY RACE IS THIS WEEKEND IN ST. PETERSBURG
FRIDAY & SATURDAY @ THE YMCA IN ST. PETERSBURG
SUNDAY @ THE ST. PETERSBURG PIER FROM 8-12

A HUGE THANKS to Wendy Johnson and all her friends for helping THE CASIE SNOW FUND continue this annual drive for donors. Please, if you can, come on down and get in the registry. Bring a friend!
Last week, Emily and Catherine were busy doing interviews for the bone marrow drive.
Check on the links below!
Tampa Bay's 10 News Interview With Bill McGinty

Tuesday, March 14, 2006

We were sorry to miss Dr. B at clinic last Friday. Just as well, it would have been too hard to say good-bye. Emily did leave him a couple of bottles of good Spanish wine (courtesy of Poppy), to both enjoy and lower his blood pressure! "Salute Dr. B!"

This past weekend has been busy. Emily's friends had a marshmallow roast for her Friday night and Saturday evening was dinner with my family at Emily's favorite restaurant, Skidder's on St. Pete Beach.

We left Florida very upbeat but now it's sunk in, why we are here. On the plane, I kept thinking about the last time we all flew together, we were on our way to ski in Colorado (our first family vacation in years). This is no vacation. This is the 'real deal'. Certainly no vacation. St. Jude is an entirely different experience.

There were a few glitches when we arrived. The driver who was sent to pick us up only had two listed instead of five. He certainly wasn't prepared for eight huge pieces of luggage.

The past two days have been full of appointments - blood tests, CT scans, X-rays (of everything), MRI's, Childlife and Chaplain visits, etc. The rest of the week is also full. It's been a little hectic because Catherine had her own appointments as well.

On Monday, Emily will have surgery remove her ports and place another type of infusion device. Catherine might have to come back as early as Tuesday - her schedule is still being worked out. They have assigned Catherine her own doctor and patient advocate.

Yesterday, we did manage to take a trolley ride downtown and walk around Beale Street. It was actually pretty nice and we are hoping to do more this weekend. The city seems to embrace the St. Jude community. A lot of attractions are free or discounted, including the trolley, which we learned after we paid the money! Hey, we don't have trolleys where we live. We tried to get into the Peabody to see the infamous ducks but the place was packed. We might try again this weekend.

Tomorrow, Steve, Catherine, and Grace will fly home; scheduled to return sometime in the next ten days or so. I will try to keep everyone posted!

Wednesday, March 8, 2006

Emily's been home a week now and is doing well. She saw the doctor yesterday and her counts are great. She had a bone marrow biopsy the day she was discharged. We got the report and it was excellent! The St. Jude doctor wanted her at zero and she is - after having wavered back and forth there. The last report showed "persistent disease" and this one showed "no evidence".

This week has been packed - with packing, shopping, schooling etc. Emily actually took her FCAT's this week. This is a Florida State Mandatory Test. Most kids want out of taking it. I am so proud of her. She has also been trying to catch up on her schoolwork.

All of us will fly to Memphis, TN, on Sunday. Emily will be admitted to St. Jude Children's Hospital on Friday, March 24. The 'conditioning' for transplant will begin then. This is three days of cytoxin (high dose chemo) and four days of total body irradiation. The goal is to kill all of her existing marrow. On the seventh day, she will be infused with her sister's healthy marrow with the hopes that it will 'engraft' and become Emily's new healthy marrow and immune system. She will remain in the hospital for several weeks. Once she is discharged from the hospital, we will remain in TN for four to six months, in order to be close to the hospital.

Emily's been trying to see everyone before she leaves and we have been busy getting the house in order. So many people are coming forward to volunteer to help with things like mowing our lawn, feeding the cat, cleaning, painting - you name it! We are truly very grateful.

Something Emily's been working on in her "spare" time is helping the CASIE SNOW FUND with their annual bone marrow drive. It will be in St. Pete the weekend of March 17th, 18th & 19th. It will take place at the YMCA on First Ave South and 31st Street on the 17th & 18th and then at The Pier downtown on Sunday, March 19th. It is being held in partnership with St. Pete's Bay to Bay Race, a premiere running event; thanks to Wendy Johnson. We are hoping to add hundreds of new donors to the registry. Although Emily has been fortunate enough to have two matching siblings, there are still many children and adults in desperate need of a donor! To highlight the need, we have formed "Emily's Team" who will be running the race in her name. Look for them and their hibiscus bandanas! (Casie's favorite flower!)
PLEASE, come down to the YMCA and the Pier on those dates; bring a friend or two, AND GET IN THE REGISTRY!

Friday is another clinic appointment - and the day we have to say good-bye to Dr. B! We are not looking forward to this and I don't know if I'll be able to hold it in. We are sure going to miss him and all the other doctors and nurses.

Wednesday, March 1, 2006

REJOICE!!!



WE ARE HOME!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Monday, February 27, 2006

Emily's white count is good and so is her ANC-the 'absolute neutrophil count' or the body's ability to fight infection. She should finish up the course of antibiotics tomorrow and hopefully, be able to go home on Wednesday. The problem now is her lungs. The pulmonary doctor has her on IV steroids and breathing treatments every three hours. She is wheezins significantly and this has to clear up before she can go home. If her stats drop below a certain number, she'll have to go on oxygen. Today, she will get more blood and platelets. We are praying this gives her an extra boost to help her fight to overcome this latest hurdle.

Thank You to Jim and Hilda DeSanto for the beautiful balloon and adorable beanie baby friend you sent. It really brightened her day! We really appreciate all those who continue to pray for Emily's healing. She has been blessed daily with so much strength and courage. Thanks to those on the homefront who are helping to keep things together and life somewhat normal for Catherine and Grace - Martha, Audrey, and Aunt Kathy. Thanks Jane for helping to get the house shaped up. Thank You Jane S., Wendy and Aunt Mimi for all your efforts to organize a bone marrow drive. Thanks to Nanna and Poppie for your daily visits, home cooked meals, COFFEE, and laundry service!

Please continue to pray - that she can go home on Wednesday and that we stay on schedule for the 3/12 departure to St. Jude. Please pray for all these children and families here on 2SW and for our doctors and nurses.



Saturday, February 25, 2006
Emily has white cells! I have been asking everyone to pray for them to come and finally, they are here. She continues to get stronger everyday. She is still on two antibiotics and the anti-fungal drug had to be resumed because the fever returned but overall, she is doing much better. I really think the fever is from a head cold. On top of everything, she caught a cold! The most recent round of cultures have been negative. She had CT scans and x-rays yesterday and they are clear. She is being monitored by the pulmonary doctor as a precaution. She does have asthma and the last thing she needs is for this cold to move to her lungs.

Yesterday, Grace skipped school and hung out here at the hospital with Emily. We also got to see Catherine the other day for a little bit. Siblings are good medicine!

This is quite the journey in FAITH - please continue to pray for Emily and all these Angels here on 2SW.

Wednesday, February 22, 2006

Emily continues to hold her own. Her counts have still not recovered and she is getting platelets and/or blood almost daily. She started physical therapy to help her regain her strength. Several drugs have been discontinued and she is being weaned off of the pain pump. Her appetite has increased ever so slightly and we have set a goal to drink a certain number of ounces each day. She is slowly but surely getting over this 'bump in the road'.

Nanna and Poppie brought her a St. Jude medal today. She wears it knowing that she is getting one step closer to getting there. St. Jude represents her
best chance for a cure and she knows that. The new plan is to leave March 12 with transplant on March 31.

Please continue to pray for Emily and for all these kids on 2SW. Many families here are experiencing some very tough times - and decisions.







SATURDAY, FEBRUARY 18, 2006
Emily is back on 2SW now. She is still very sick but has improved. Her blood pressure is up and stable and so are her stats. She is on several different 'Big Gun' antibiotics as well as an anti-fungal medication. She continues to need blood and platelets almost daily. Over the past 24 hours, she has been able to eat and drink a little bit. She was even able to sit up in bed for awhile and work on crafts.

There is a CRITICAL need for blood and blood products in our area. This floor
is overflowing with extremely sick kids. They even have kids up on the 4th floor waiting for a room to open up down here. Almost all of them are in need of blood products so if you can and you live in the Tampa Bay area, GIVE BLOOD! If you have some time, please consider donating platelets as well.

We have so much to be thankful for. I have received countless emails from people who continually pray for Emily and have added her to prayer lists everywhere. She is testimony to what the power of prayer can do.

Her condition is still very serious and it gives us comfort knowing that SHE IS IN GOD'S HANDS.




Thursday, February 16, 2006

On Monday, Emily's counts were down so Dr. B ordered two enormous bags of platelets. That afternoon, her eyes were much better so she was able to go down for her brain MRI the next morning.When we got back to the room, all she wanted to do was sleep. As the day progressed, she continued to sleep, complaining of shivers and chills. After making some comments that didn't make sense, I started the feel anxious, like something wasn't right. I decided to make the nurse call Dr. B.

Dr. B came right over from clinic and by then, Emily was really shaking under several blankets. Within minutes, her fever spiked pretty high. I am not really sure what happened next but he had everyone in the room and he was ordering all kinds of things. Things went from bad to worse very quickly and he called up the ICU doctor and team from downstairs. Her blood pressure dropped and her she couldn't hold her stats without oxygen. They stabilized her and moved her there. She was in septic shock from a gram negative blood infection. They don't know what type yet but have her on a multiple of antibiotics. She was also pumped full of more platelets and blood. She on blood pressure medication to keep the pressure up.

Right now, she is still very, very sick. She is alert and is on room air. Her blood pressure won't stay up without the medication but that's okay they tell me. She is stable and hasn't gotten worse. They told us the first 24 - 48 hours would tell. Today, she was hungry but nothing is staying down. Her kidneys are working and all her other major organ systems seem to be okay.

I really feel like God was with us the other day - that little voice telling me to call. I feel so blessed that Dr. B came when he did - and he reacted so quickly. I am so thankful for all the ICU doctors and nurses who worked so hard and continue to so to get her well.

That day, Dr. B promised Emily that he would get her to Memphis! We are not thinking about that right now. We are just praying to get through each hour of the day. Please continue to put her name on all those prayer lists and prayer chains out there. I know God is holding her close right now.

WEDNESDAY, FEBRUARY 15, 2006

Emily is in desperate need of prayers right now. She was moved to ICU yesterday. I will update more later. Please put her name out there!!!




TUESDAY, FEBRUARY 14, 2006
Prayers have been answered and Emily's eyes are doing much better. They will wean her off the pain pump. Right now, she has no white count so she will remain at All Children's until her counts begin to recover. Please pray it is soon. She was hoping to enjoy some time FREE before we leave for Memphis. Right now, we are thanking God that she has improved. AMEN!


SATURDAY, FEBRUARY 11, 2006
We went to clinic Wednesday accompanied by both Catherine, Grace, and Daddy. St. Jude wanted more blood from the siblings and for Catherine, one poke turned into a dozen! She left there bruised and in pain!

Emily was admitted for the second half of this chemo. Her counts were already diving from the first half and before the first dose was even through, she was barfing buckets. Thursday, she was pumped full of platelets and more blood and spent most of the day sleeping. Apparently, the orders for the eye drops which accompany the chemo, were not followed so now Emily is paying the price. The last 48 hours have been absolutely awful. Her eyes have excruciating pain. They finally brought in a PCA pain pump around 3am so that she has a constant drip of dilaudid. An opthamologist also came by last night to examine her eyes. The only relief she's had so far was the numbing drops he had to use in order to even get her eyes open. We have been sitting in the dark with paper covering the windows because even a little bit of light, hurts her eyes. The Dr. said that it might be several days before her eyes start to feel better. In the meantime, she is using drops and ointment along with a sleeping mask. If ever she needs some prayers, now is one of those times!

Meanwhile, we are scheduled to leave for St. Jude on Sunday, 2/26. All of us are going. Emily and I will remain up there and the rest of the family will return home once additional testing on the silbings is complete. They will return to Memphis closer to transplant sometime in March.

Emily is disappointed that she will not be here for the bone marrow drive that she is helping to plan. It will be the weekend of March 17, 18, and 19 in conjunction with St. Pete's annual Bay to Bay Race. A lot of wonderful people are coming together to help make this possible. The drive was started a couple of years ago by the Snow Family in honor of Casie, one of Emily's friends here from the hospital. Casie passed away 8/04 and her family wants to continue the drives in honor of Casie. This is all made possible through the Casie Snow Foundation. The amazing thing is all the other 'cancer families' who want to help. You can help by registering to be a bone marrow donor or just coming to the race and walk/run.

Always, I ask that you continue to pray for Emily and for all those families touched by cancer.

TUESDAY February 7, 2006

Emily's update forgot to mention that she will be readmitted tomorrow. She still needs to complete the second round of chemo. The reprieve was less than 48 hours but hey, we'll take what we can get. Already, she looks better. Her counts are low and will continue to dive. This latest chemo pretty much wipes out everything. I fully expect her to need blood and possibly platelets tomorrow.

We were supposed to return to St. Jude this week for additional blood tests on Catherine and Grace. The doctors, however, have decided to have the blood drawn here, and shipped to Memphis. All the girls will be at clinic tomorrow so this should be fun! Catherine isn't a fan of needles but she puts on a brave front. Grace on the other hand, requires a LITTLE more work. We keep telling her that she has to give blood to "help Emily's boo-boo go away." Even though she is scared, she complies. I am very proud of both her and Catherine.

We have received last week's bone marrow results which show persistent disease at one percent. This further affirms the need for the aggressive chemo she is getting now, as well as the indication for BMT.

There have been so many who have been faithfully at our side during these past few weeks. I hope that everyone knows how truly grateful we are. Thank you Maureen and Dorothea who continue to get Catherine back and forth to school. Thank you Indira for all the rides for Catherine so that she can continue playing on the school basketball team. Thanks Katy and Ed and the Bracic's for keeping a watchful eye on Catherine and for all the TLC! My neighbors, Martha, Jane and Audrey continue to assist our every need. Thank you Aunt Kathy for taking extra special care of Grace. My parents and Aunt Mimi for feeding us and doing our laundry at the hospital and for all the spiritual and moral support. A huge Thanks to my extended family in Syracuse, New York - really, we were in awe! The LeMura's are my wonderful cousins and then some - who's matriarch is Cousin Mary, (one of the best cooks I know. She makes all the 'feel good' foods!)Most of all, we truly appreciate the continued prayers of the very faithful - all faiths! God continues to bless us each and every day.

Please pray this next hospital stay goes smoothly and that Emily recovers quickly so that we can leave for St. Jude. God Bless!


MONDAY, FEBRUARY 6, 2006
We're Home!

Thursday, February 2, 2006

Our visit to St. Jude went well. The entire experience was sureal. How many times had I watched clips of St. Jude's on TV? I had even donated to them before. Now we were there - one of those children you see on TV. The most memorable thing about the hospital was the walk to the cafeteria. On the wall they have the 'Cancer' ABC's. Each letter stands for something; they are all written by children. Some will make you laugh but most will make you cry.

The doctor spent quite a bit of time with us and was extremely patient about answering all our questions. Everything was very well organized and the hospital thought of every detail. The bottom line is that we are comfortable with proceeding.

The date for the transplant has been pushed back to March by St. Jude's. They did approximately 160 transplants there last year and each one has to be carefully scheduled in. Unfortunately, this means that Emily has to go through another two rounds of chemo here. Currently, she is inpatient at All Children's and is halfway through the first round. She will have a few days off and then the second round. As soon as she recovers, she will return to St. Jude's. We are waiting for the results of the bone marrow biopsy done yesterday. The St. Jude doctors want her to be at zero.

As you know, nothing comes easy for Emily. Today she was moved to isolation because of a fever and some strange spots on her skin. They have ordered a barrage of different tests and cultures and have started her on antibiotics. This chemo is pretty strong and the barfing came just a few hours into it. She hasn't eaten anything today and feels just plain YUK! It's a shame because she had been doing so well and was feeling great all during the trip to TN. She didn't need a wheelchair and even wheeled her own luggage through the airports. Her appetite's been good and we walked from the hotel to the hospital rather than take the shuttle. It wasn't very far but the walk in the brisk air sure felt good.

More than ever, please continue to pray for her.

Also, I will be posting more information regarding an upcoming bone marrow drive in St. Petersburg. It's amazing how it is coming together thanks to my sister Mary, her friend Wendy Johnson, and Jane Snow and the Casie Snow Foundation. We are looking for runners/walkers for the annual Bay to Bay Race in St. Pete which will be March 19.
I will post the info soon.

Saturday, January 28, 2006

Emily and I leave for St. Jude's in the morning. She's been feeling pretty good since she's been home. She even went to see a movie with friends (like every normal 16 year old should be doing on a Friday night!), and we went out to dinner tonight. She saw the doctor twice this week and her counts are good. It's a blessing that she's feeling up to this trip. We 'googled' the doctor we are going to meet with on Monday and will finish our list of questions for him tomorrow while we are on the plane. We are ready!

Again, there have been some amazing people who have come into our lives - family, friends, neighbors, and strangers. Lots of prayers have already been answered so please, continue to pray for Emily's healing.

Sunday, January 22, 2006

EMILY'S HOME - NOT FEELING TOO HOT BUT HOME.


SATURDAY, JANUARY 21, V2006
Emily is actually doing pretty good. This chemo is one she 'has to clear' so we are hoping she clears this evening and she can go home. She has had a lot of nausea and mouth sores but otherwise, is holding her own.

Emily and I will fly to St. Jude's next Sunday. She will meet with one of the transplant doctors on Monday and we will fly home on Tuesday. The tentative schedule is for all of us to return around 2/6 when additional testing will be done on Emily as well as on Catherine and Grace to see which sister will be the best potential donor. So far, they are both equal. Emily and I will remain in TN and the girls will return at the end of the month with Steve. The transplant is scheduled for 2/24 with the 'conditioning' starting 2/17. Once this starts, transplant must take place so it is very important that everyone stay healthy. On the homefront, we have been VERY BLESSED by the multitude of family, friends, and strangers, who continue to provide support and prayers. We just want everyone to know how much we truly appreciate everything that is being done for Emily and our entire family. Everyday, we see how God is working through others. THANK YOU!!!


Wednesday, January 18, 2006
Emily got a one day reprieve! She was supposed to be admitted yesterday but the hospital had no beds. Okay, twist her arm, she'll stay home one more day! Today, beds were first come first serve. She did get in and the 24 hour chemo infusion has begun. This should be her last one here at All Children's. Dr. B told us that we are expected in Memphis on or around the 30th of this month. This initial visit will be a consult and preliminary and will give us a chance to tour the hospital and meet the doctors. We are really praying that she has a couple good weeks at home after that and before the transplant.

These past few days at home were nice. Emily was able to go out to dinner and take a brief shopping trip to Walmart. She was pretty tired and the walk from the car into the store was just about all she could do. Her appetite is good and her counts were great. She did have Home Health Care for the IV antibiotics. The nurse came out the first night and we could sense that he might not have been too comfortable with her situation (double ports). His job was to basically teach us. We told him we'd be okay and never saw him again. Emily was flushing her own ports and hooking up her antibiotic like a pro. She even de-accessed herself (removed her own needles), prior to yesterdays clinic visit. This allowed her to ge a good shower before check in plus the needles were due to be changed anyway. When the supplies were first dropped off, there was no IV pole. Luckily, Emily remembered we had a hat rack that was hardly ever used. The rack along with a wire coat hanger got things running in no time.

Our goal is five days max here. We even packed light. We are very optimistic! Pray she gets in and out without any more infections!!! It's sad that this floor is full. There are several new kids who just got diagnosed. Please keep them and their families in your prayers.

Sunday, January 8, 2006

Today's a GREAT DAY! Emily's home. She is having home health care to run the vanco twice a day (or teach me to run it). Also, Dr. B did a bone marrow this morning and he called tonight to say the blast count was ZERO!!! She goes to clinic Monday and will probably be admitted either Monday or Tuesday but hey, she's got the weekend home.

Sunday, January 8, 2006

The past few days have been long. Emily has been pretty sick. Sick enough to think that she doesn't want to go through transplant; knowing that she will be even sicker than this. I just don't know what to say to her accept to tell her that she will get through it. It sounds so easy for me to say. I look at her tiny little body - yellow - eyes hollow and dark - bald - shaking with chills under a mountain of blankets. It's hard to remember what she looked like eight weeks ago. That was ages ago. This is reality - painfully so. I DO believe she will get through it though. Despite everything, she still has the spirit - those giggles coming from under the sheets while watching the Simpson's - those beautiful eyes as she rolls them at me - that little slap when I try to kiss her forehead one more time. I know she is strong enough and how do I make her believe that she is too?

She is battling yet another gram positive cocci infection. Today might have been a turning point because her fevers have remained low or nil almost all day. The infection buys at least 15 days here because she has to be on the vancomycin that long. She has no counts but today, there was an ever so slight increase. Hey we'll take anything in the right direction! She got platelets and blood which she seems to be holding. Dr. B has been here right on top of things as usual. He even came this morning when he didn't have to. He said that Emily might not need the last round of chemo scheduled for a week or so from now. All of us are getting anxious - knowing what we will be facing - knowing that we are going to be separated for a long time. For the most part, it will be just the two of us in Memphis. There seems to be so much to do before we go but I don't think there will be time and then I think "Does any of it really matter?" When I said good-bye to Grace today, I couldn't hug her tight enough or kiss her enough. I really needed my "Grace Fix" today and I treasured it. You have to know Grace to experience it! She's our 'special girl'.

Again and again, I ask that you continue to pray for all these children. 2SW is full. There are only a couple of familiar families. The rest are all new. You see the faces of families who have a child that just got diagnosed. You know how bad it is. You feel their pain. Pray for our doctors and nurses. Pray for God's blessings on 2SW.

THURSDAY, January 5, 2006

Day 10 here at the hospital and Emily is feeling pretty crummy. The course of chemo was only five days but it was brutal. The side effects are hitting now - meaning her counts are dropping hard and fast. Her white count is .12 (that's point 12)! and her ANC is 16. She will most likely get blood and platelets tomorrow. The worst part is that they expect her to go even lower. These counts are with GCS! We are waiting for that to kick in. It boosts the white cell count or is supposed to anyway. They have her on three different medicines for nausea - pretty much round the clock and the barf bucket is well within reach. She is trying to eat when she can but it's a mixed bag. She wants to eat but feels yuk afterwards.
She has been on an antibiotic for a persistent low grade fever since last Friday and tonight, they added one of the big guns, vancomycin because the fever started to spike upwards again. She also had a pretty rough afternoon. Today was her final day of albumin and lasix. Her vessels were leaching fluid again.

I am okay with being here. I feel safer since she's in dangerous territory. Her body is so susceptible to infection from itself. When she feels up to it, she works on crafts and her exams from last semester. We are still not sure what she will do about schooling for this semester. It's very upsetting to Emily to think that she cannot continue her IB curriculum. It makes her really hate all this cancer stuff! Me too!

All of us really miss each other. Even though we live closer to the hospital than most, it's hard to see each other everyday. Trying to keep life normal for Catherine and Grace is challenging. They still have school and extra curricular activities. I can't thank my neighbor Audrey Yancey enough. Audrey just retired from teaching at the college and graciously volunteered to come over every morning and help out with Grace. It's such a relief to know that Grace is in good hands.

Cousin Parker - HAPPY BIRTHDAY! We Love You!

As always, please continue to pray for these brave courageous and most precious children-who fight the fight every single minute of every single day. Their courage, their strength, and the grace in which they face this awful, awful, disease; is truly humbling and most inspiring.






SUNDAY, JANUARY 1,2006
HAPPY BIRTHDAY DADDY! He's on the 'upside of 50' now. We thought we would be home to celebrate but that's not going to happen so we'll have to celebrate another day. This chemo was pretty rough on Emily. She is on round the clock medicine for nausea. Today, she'll ring in the new year with two units of blood. She started running a fever Friday night but so far, none of the cultures have grown anything. She was without fever all day yesterday and then last night, she started spiking again. Yesterday was rough, her aunts and cousins left and she was sad. She loves seeing them and had really wanted to spend more time doing 'fun' things with them. I miss them too!

Please continue to pray. We talked to the doctor at St. Jude's again this past week. Plans are in the works and we hope to know something more definite this week. God Bless and Happy New Year!

TUESDAY, DECEMBER 27, 2005
It was wonderful being home for Christmas. We didn't do much but that was okay with me. The best part was all the girls falling asleep together in front of the TV in the family room! Yesterday, we had a pizza party at Nana and Poppy's. It was the first time in years that I was together with my siblings. We had one picture left on one of the cameras so we were able to document the five Previtera children together.

So many people came together to make Christmas VERY special for all the girls. We are truly humbled by the generosity of so many! A heartfelt THANKS to the Newman's for making Emily's Christmas so special! A special THANKS to Country Day Montessori School Parents and Students along with The Wellington School, Seminole, Staff and Families. Your gifts were most thoughtful and very much appreciated. We also were extremely touched by a 'Secret Santa(s)' - who we suspect is in the neighborhood. Your surprise was 'jaw dropping'. We also want to Thank Vicky Smith and the Smith Family, Kanyon McLean, the Figley's, the Hay's, the Stevens', St. Pete High's 10th grade IB class - you guys are AWESOME and Rachel Manzo, the LeMura Family, Janet and Frank Robertson for the Christmas Tree, the Foley's (again and again), the Ellison's, the Snow's, the employees of Florida Glass of Tampa Bay, Inc, American Products Inc (API), and The Children's Cancer Center of Tampa - who saved Christmas! Thank You Greg Covey for all the Wendy's coupons. Thank You to our families - who mean so much to us and have put us first in their lives right now when we need them most! Thank You Parmalee's, St. Jerome's, St. Jude's, and St. Paul's, Anona, and all the other churches actively praying for Emily's healing. Thank You Cypress Creek Elementary for your generous donation of books to All Children's in Emily's name and Diane Gale for organizing the collection. I pray I haven't left anyone out - know that our lives have been touched so deeply!

Christmas Eve, we were all in our PJ's when our doorbell rang - it was the Ceraolo Family - Paul, Carla, Ian, and Julia - with gifts for our family. It was THE BEST SURPRISE and meant so much to us. Know that your beautiful daughter, Olivia, forever is a part of us. Emily's dog was as big as a labrador and Grace was adorable as she tucked her puppy into bed. She had in sleeping on his back with his paws up over the sheets, snuggled next to her. It was priceless! Again, we were so very touched! God Bless You!

Emily is now back at All Children's for more chemo. She started Cytoxan and VP-16 along with spinal chemo today. She will get five days of this and hopefully, we won't be here much past that. The plan is to be admitted again in two weeks for another round after this. Dr. Barbosa is still working out the specifics with doctors at St. Jude's but we are thinking that Emily will probably be up there by the first of February.

Tomorrow, Emily is throwing her baby sister Grace a 13th birthday party here at the hospital. Emily has always taken charge of Grace's birthdays. She always does a great job. One year, she made the best video. It was great. Hopefully, we will be out of here by Daddy's birthday New Year's Day.

Wishing you all the best. Please, continue to pray for Emily and all these children here who continue to battle this monster. Continue to PRAISE GOD for all the miracles we witness everyday.

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