A Day of Transfusions

Shayne was able to get Christi to eat a little yogurt he brought over to the hospital from Au Bon Pain today. The dreadful mouth sores are quite nasty now. She has VERY LOW blood counts (ANC of 60, white count of .3 - yikes!) and her hgb. and platelets were so low that she needed both blood and platelet transfusions. That always makes for a terribly long day at CHOP. Thank you, blood donors!!

Last night the three watched "Ice Age" to prepare for today's opening of "Ice Age II" which Christi has been anxious to see with Daddy. It's playing a couple blocks from Ronald so that is what they are doing tonight as I type. We expect her to be inpatient on Monday if not before so they figured they'd best go tonight while they still could.

Thanks to the wonderful Kerschner's for dropping off some of Sharon's great home cooked food in Philly today! Shayla and I met up with the Grine's tonight at the "Rock Creek Cafe" at Heidelberg. I had a lovely time catching up with Lori while Shayla had a ball playing with Kelsey and Tiffany.

Missing Christi

I think it hit me tonight........I know others have it much much much worse, but I'm really missing Christi........and Shayne, but that goes without saying. It's so hard to be apart! Here are some photos my mom emailed me which she took while in Philly last week. They make me both laugh and cry. (One is of the sweet Doctor trying to examine Christi while the girls tease her out in the hall instead. The other is of the silly 4th graders locking the fun loving volunteer in the playroom. What a hoot!)

Shayla's been absolutely delightful! She's a loving sweetheart!! I hope her teacher isn't reading this, but she made my day today!! What a hoot! In the midst of my teaching, the classroom door opened and in she strolled sweetly declaring, "I love you Mama." My students were speechless as she quickly walked up to me, gave me a kiss and then walked right out the door. Then my students starting giggling telling me I should tell her what she did when she's in the 8th grade! Things have been really rough for her and I worry so much about how she's coping. It gives me tremendous comfort to know she's not too far away while I'm at work. (I think it gives her comfort too!)

Today Christi, Aunt V and Shayne went to the fabulous Academy of Natural Science Museum. She just LOVES that amazing place!! Shayne reports other than her mouth sores, which have increased and now have tremendously reduced her ability to eat anything, she continues to feel well and that it was a lovely, sunny day for a walk (stroller ride for CT) downtown. During Shayne's Starbucks stop, Christi tried a "vanilla milk" and really enjoyed it. (He was glad she was able to get some calories in her with her mouth sores.) They spent time at the book store and Shayne said she read 75% of a chapter book while out on their stroll today!! They went as far as the Philadelphia Museum of Art and back. Her port was left accessed yesterday as she will be back to the hospital tomorrow morning to get her blood counts checked and to possibly get more blood products. She's been on a spirograph mission with Aunt Vaunie - creating lots of lovely pictures.

While I'm grateful that she had a dramatic response to the high dose chemo, it's VERY toxic and her body can only take so much chemo which is why we're anxious to get on a clinical trial of something less toxic. Christi's now had an unbelievable 35 rounds of chemo pumped into her little body. (OK, not so little she topped the scales yesterday at CHOP at an amazing 70 pounds much to our delight!)

Enough venting and being down! I know how fortunate I am to even still have her here on earth when most others with this tricky disease are not so blessed. I know she's a gift on loan to us from Heaven above. But..........thanks for letting me share; I feel a bit better now! Good night! And God bless you!

Counts Dropping

This beautiful picture is of Ashleigh - a brave little gal from Michigan who earned her Angel wings this morning after a two year battle with neuroblastoma. We shall continue to lift her family up in prayer as no parent should ever endure this excruciating pain. Fly, Ashleigh, Fly!! Her website is: http://www2.caringbridge.org/mi/ashleigh/

With blood counts falling (ANC now down to 200) Christi needed a platelet transfusion today at CHOP. I spoke with Shayne after they met with Dr. Maris. Shayne seemed very glum that Maris's plan is to continue with the chemotherapy concoctions as she has too much disease to go back to attempting experimental trials. I must admit it is heartbreaking and I'm very sad too.

School has been great- something about working for over 100 middle school students provides the perfect distraction as well as being back with my sweet colleagues and friends. Shayla and I've had a wonderful time together. "Julie of the Wolves" is our current book. Tonight she'll go to religion class while I study.

Christi will get her blood counts checked again on Friday and will most likely receive another life saving transfusion. I also anticipate her fever, which will put her inpatient at CHOP, to set in about that time too.

Aunt V's Arrived!!

I called Shayne after school on my way to Ohio State. He told me that she had the "queasy chemo stomach" today and the beginning of the mouth sores, but other than that she was feeling well. He gave her the dreaded (and expensive) Neulasta shot this afternoon reminding her it would be the only shot and not the 10-14 shots like with previous rounds of chemo. It didn't make it hurt any less, but at least it's behind her now.

Late this afternoon they picked up the wonderful Aunt Vaunie who flew in from Phoenix to help out this week. Then with tickets, compliments of the wonderful Ronald McDonald House, they went to enjoy their box seats complete with many eats (Yes, in class tonight I received a text message from Shayne "Shrimp, crab cakes, dessert cart - wish you were here!!!!") at the Philadelphia Flyers hockey game. Since my phone has free minutes after 9:00, I called them on my way home and Christi's incredible laughter and delight being experienced at the hockey game with her beloved Aunt and Daddy moved me to tears. I'm SOOOOOOOO thankful she's not in pain and for sweet Angels on earth who continue to get us through each day. The people who donated the tickets to the Ronald House will never know the fun they all had tonight down at the Sports Complex. We've been so richly blessed!!

Speaking of great blessings...........thank you to my beautiful cousin, Tricia, who provided care for Shayla while I was on campus tonight and even took Shayla to her pilates class. (Can you talk and do pilates at the same time??) Shayla LOVES being with Tricia and their two dogs, five cats and one lucky turtle!!! They even had time to squeeze in a pizza outing and crafts!! Tomorrow, I will be sporting gorgeous new earrings created by loving little hands.

And finally thank you to the sweet Bowermans who left a wonderful meal for Shayla and I. We are truly unworthy of your love. THANK YOU!! Goodnight!

Changing of the Guard

Congrats to Josh and Rosa! Christi & Shayla have a new second cousin! Yipeee! What a cutie!! We wish the baby good health and much happiness!

The official "Changing of the Guard" took place outside the sleeping Princess's hospital room this morning with tears pouring down my face. Shayla and I then walked over to wait for the train. Christi had her last day of the TVD chemos this morning and was discharged and back to Ronald this afternoon. Unfortunately, her mouth sores have just started to invade. Her mouth sores will slow the eating and will begin her intense pain. Thankfully, Shayne hadn't noted any neck pain today!

Thanks to my best friend, Becky B., and her wonderful son, Scott, Shayla and I were picked up outside of the Detroit airport this afternoon and it feels great to be home now- despite the fact my heart is still in Philadelphia. I will do my very best to ensure that Shayla has a tremendous week; I have some special things planned - just for the two of us! Thanks for checking in! Thanks for your continued prayers and support!

"WICKED" Sunday, March 26, 2006

Christi's blood transfusion helped as she said to me, "I can breathe better now." Upon my arrival today, I read in her chart that she had a reaction and in checking with Shayne I found that to be true; however, when they got her up and about her drop in blood pressure resolved itself. Praise God! Today was her last day (5th day) of the topotecan chemo; tomorrow (Monday) will be the most challenging of agents- Vincristine and Doxarubicine. Later she'll be discharged back to the Ronald House. Her need for transfusions will increase and her drastic drop in blood counts will take place in matter of days. Soon fever will set in and this will land her back in the hospital- this time without any chance of "get out of jail free passes". She continues to feel well; however, she does say that her neck hurts and Shayne and I feel ill every time we see her bending her neck back, or rubbing it. The beast is so wicked!


For the six hour pass today (which again turned into eight blessed hours away from CHOP) we spent the first two hours reading and enjoying the Barnes and Noble at UPenn. Then it was back to the Ronald House to heat up some left overs for dinner and to play a bit before heading back out. Imagine my surprise to see a sweet posting to the blog: ... As I was driving home from the city with my friend and our daughters from seeing Wicked this afternoon(which was brilliant), who do I see walking down Walnut Street, from Penn's bookstore I presume, but the Thomas Team. Shayla looked quite happy on her daddy's shoulders! Glad you were able to get some fresh air on a beautiful day. Keeping you all in our prayers. (From: The Rae Family) 3/26/2006
Weeks earlier I noted "Wicked" was going to be in Philadelphia. Earlier, Shayne had contacted Jim Doughtery to inquire about tickets and my sister sent the soundtrack for Christi to listen to hoping to provide a distraction. After learning that "Doc" was so kindly providing our family with tickets (fifth row, center to be exact!) to the sold out production of "Wicked" downtown on the Avenue of the Arts, I read the explanation sheet Tina sent about the show to our family to help us prepare.

While at the bookstore, Shayne located the book and we crammed as well as we could for the show while the girls devoured the children's section. Worried that it may be "over their heads" I couldn't have been farther from the truth. They throughly enjoyed it and picked up on so many things. The musical production was incredible, the artistry magical. After the show the girls had another special treat thanks to an Angel on earth and they were able to meet "The Oz" and "The Witch of the West". Both the actor and the actress were not just talented in musical performance, but incredibly delightful and charming in person as well. What a blessing; thank you!!

Having Shayla here has been the best of medicine for Christi- and for all of us. She will never know the love and happiness she spread here in Philly! The girls have been joyous playing so well together and loving this very special, treasured time. I'm going to have to somehow muster up all the strength and courage I possibly have to turn around and leave for the airport tomorrow, without Christi. I've told her time and time again, "I will always be with you. I will never leave you; no matter what happens- we will be together." (Shayne is the best of playmates; however, when she doesn't feel well I know who she wants for comfort.) Sadly, reality dictates otherwise. Every day of work I miss means my pay is docked and that certainly doesn't help pay our bills. This has been the most trying of times and I simply must head for home and get back to work come Tuesday morning. Shayne's sister (Aunt V) will be flying in from Phoenix on Tuesday to help out for the week while I'm away. Thank you for lifting us all up in prayer!



Wicked
The Kimmel Center presents Wicked. Long before Dorothy drops in, two other girls meet in the land of Oz. One--born with emerald green skin--is smart, fiery and misunderstood. The other is beautiful, ambitious and very popular. How these unlikely friends become the Wicked Witch of the West and Glinda the Good Witch makes for the most spellbinding new musical in years.

Thomas Team Together

With my van having over 159,000 miles on it, I never expected Shayne to venture to drive it all the way to Philadelphia, but when I entered the garage in the middle of the night that's what I saw pulling in. THEY MADE IT! I couldn't get Shayla's door opened and her seatbelt off fast enough. Shayne is the most amazing man. And with God as the Thomas team's "Unseen Captain" they arrived safely.

Mom told me that Christi borrowed a train set from the playroom and put it together on her (huge) hospital room floor so that Shayla would have something to play with when she arrived, so thoughtful. Her IV fluids needed to be hooked back up because she was not drinking enough, yet she felt so well that she kept my mother up until 1:00 AM playing and eating. (She seems to slip into "teenager mode" when she's at the hospital-staying up late and sleeping in.)

Because my mom hadn't seen Shayla since mid-December, she whisked her out of Christi's room and off for fun as soon as we arrived in Christi's room where she was soundly sleeping this morning.

This morning's blood counts showed the drop that's already taken place, hgb. now down to 8.2. (We expect the worse set in next week.) Because we wanted to venture out today they agreed to transfuse her with blood at midnight and then gave us a six hour pass. When we returned tonight, her hgb. was down to 7.8 which explained why she occassionally said at the museum, "It feels like I can't get enough air." (Amazingly enough, she was actually RUNNING around despite needing a blood transfusion.) All day today we cringed each time we'd observe her bending her neck. When asked, she'll tell you that it hurts - but not bad.

Please Touch Museum Even though designed for little kids, Christi had been wanting to return to the Please Touch Museum she remembered from a couple of years ago. The wonderful people at the Ronald House provided our family with free admittance passes and we drove downtown where the girls had a ball playing together at "Please Touch". Explaining that we had a few hours left on our pass, we asked the girls if they wanted to go back to the hospital, or to the Ronald House and without a doubt you all know where they decided.

Shayne dropped us off at Ronald and drove my wonderful mom back to the train station to get to the airport. (Thanks, Mom!!) Back at the Ronald McDonald House there were about 15 high school volunteers in to play with the kids and to make ice cream sundaes. Imagine Christi & Shayla's delight to find out that they were the ONLY Ronald kids to be played with. For hours they were treated and spoiled by these great students doing crafts and playing games. (So much for the six hour pass.........eight hours later we snuck back into CHOP where the sweet doctor chuckled and said, "I didn't see a thing.......Do you think my kids would enjoy that museum too?")

Night with Nonee

Tonight I took the Ronald shuttle van back to the McDonald House to sleep while Christi will spend a special "overnight" with Grandma Nonee. (Plus, I want to be the one to go to the garage at 3:00-4:00 AM to let Shayne drive in, not my sweet mother who would be nervous and I'd worry about her not sleeping well.)

Christi's chemo went fine today. We have been richly blessed by the good Lord!

There is an increase in the amount of "neck bending" which concerns me deeply. She occassionally says it hurts, but.......it is what it is (Problem is: we just don't know what "it" is and our prayers are asking for its rapid resolve.) We can never thank all of the people who have been praying, supporting and cheering for Christi; yet we do pray that their reward will be great!

She had a wonderful morning-thanks to this incredibly awesome webcam. Her school hooked up one of the student's webcams (Thanks, Grant!) and she was able to "chat" and see her friends at school for 45 minutes. It was awesome! Thank you all!! She's so fortunate to have teachers and friends who love her so. Shayne and I continue to be amazed and deeply humbled. She really misses school while we are away and we truly appreciate all they do to help her cope. If there's just one thing we've learned in this 3 1/2 year journey, it is God's people are good!

Today I received an email from Rich and Andrea telling me Christi received a "youth award" from the American Red Cross at a breakfast in town this morning. That was very sweet! And the timing was perfect as I believe she'll be receiving life saving blood and platelet transfusions VERY soon (perhaps tomorrow already). I don't believe she looks as well as she did a few days ago and I believe her counts tomorrow will reflect that. Thanks to sweet life-saving blood donors, she is able to continue fighting this beast. (And fighting it with the grace of a ballerina and the courage of a prize fighter! Quite frankly, I don't know how this girl does it, but she does it well!

Tonight she asked if she could pass out the darling distraction puppets to the "sick kids" that sweet Angel Karel knitted and sent her. (I always chuckle when she does stuff like this; she gets a HUGE charge out of making other kids smile.) Because the kids on 3 South (oncology) are typically VERY ill and stuck in their beds after walking the entire circle without seeing a single child out she suggested, "How about finding a waiting room? There are always kids there," so I checked with her nurse and off we went to spread some Friday night cheer. Not only did she pass out the puppets, she was even able to read some books to an 18 month old which brought both girls great joy. When parents asked her how much they cost, she roared with laughter and said, "Nothing costs in the hospital except for the treatments." (Oh, she's got A LOT to learn!! smile)

Back at the wonderful Ronald House there was a package for Christi. Her wig arrived!! It's not the Locks of Love wig (yet) but the synthetic one they send while the wig with real hair is being made. (It takes months.) The color was a bit darker than I expected and I'd like to have Cindy shorten it, but I think it'll be just fine and she'll like it very much. (We'll find out in the morning and I'll post a picture as soon as I snap one!)

Shayla and Shayla left home at 6:00 PM and were 187 miles into the journey to Philly just a little bit ago. I'm terribly anxious to see them and so grateful for God providing me with the most incredible husband and sibling! I anticipate a 3:00 AM arrival. (Christi knows Shayla and I will be greeting her at the hospital in the morning. She can't wait to show Shayla around and to perform some new magic tricks she's been working on. She really got the nurses the other night- and Nonee today!)

While I hate to be about 11 blocks away tonight while she is with her Grandma I know she's in the best of loving hands. Shayne and I were parents who could never understand how others could drop their children off with their parents and go out, or go on vacation WITHOUT their kids. We've always enjoyed the children immensely and it's going to be very hard not running back over to the hospital tonight to join in on the fun! (There was talk of popcorn and another showing of the new "Chicken Little" DVD as I was leaving.) Seriously, time with Christi is special and knowing how precious "this situation" is makes being away from her for one single second, VERY hard.

Being away from Christi leaves me with a pit in my stomach tonight; yet, I can't even imagine how much worse it's going to feel come Monday when Shayla and I leave Christi in the hospital and fly home without her.

Only through His grace,
Angela

Princess Christi

Fortunate to have made tremendous friends along this journey, we’ve been richly blessed! Due to yesterday’s bad news, I was having a terribly difficult time sleeping late last night. Running the odds and statistics through my mind, I just couldn’t rest. Therefore, I called one of my dear NB Angel friends and talked with her until the wee hours of the morning. (Thanks, Sharon!) Finally, I decided not to focus on “the odds” because our daughter isn’t a race horse – she’s a Princess!

The morning’s chemo (topotecan) was again very well tolerated by "the Princess" and during her physician’s exam my mom informed me that Christi was laughing and giggling so much that her doctor said to a nurse, “Did we give her laughing gas instead of chemotherapy?” (Nothing makes me more joyous nor more in awe of the amazing and powerful work those working with pediatrics do! They certainly must overcome various obstacles-ya know, like examing a child while he/she rides on an IV pole down the hall.) She played with Tara and mom said lovingly that things got a bit out of hand with a sweet volunteer (a med student) while I was making the run back to Ronald and to the grocery store. (Leave it to Grandma Nonee to forgo discipline!)

"The Pricness" went to “school” for an hour this afternoon. Most likely, much to her surprise, the volunteer she and Tara earlier locked in a playroom was also the teacher’s assistant!! (Oops! Thank God he was a great sport and actually was encouraging the girls to be naughty tricksters!) Her teacher (who also worked with her back in the fall of 2003) told me Christi was very gracious and charming- perhaps she didn’t get wind of the earlier “incident”. In "school" she worked on her Siamese Cat report for Mrs. Smith. She told me all of the other kids in her class already did theirs, but she wants to do one too when she gets back to school and she’d like Buckeye to be her visual aid.



The Grant girls had the day off from school today. So very humbled was I to receive Debbie’s call this morning stating that the girls would like to come and play with Chrsiti because they know how hard it is to be lonely. Unbelievable! With amazement, I accepted their offer with gratitude and for hours this afternoon the girls played and enjoyed crafts and snacks Mrs. Grant brought. What fine young ladies they are!!

Thankful that mom was able to stay with "the Princess", I throughly enjoyed spending an hour at the Barnes and Noble bookstore at UPenn today. I never even entured to the children’s section, but devoured their large “Education” section getting lost in my own interests. A sweet Barnes and Noble gift card was used to purchase the new “Chicken Little” DVD which we will be enjoying together in just a little bit. (Thank you!!)



This picture didn’t turn out so well, but "the Princess’s" window now has some “zip” to it. With the gorgeous “hands” made from all of the kids at Repbulic Elementary posted to the top of her window, window paint (We hope that’s what it was, hmmmmmm?) was used to write “HANDS UP FOR CHOP!” Yes, we are grateful to be treating here and tell the Princess at least once a week, “Only the very best of hopsitals and doctors for you!”

"The Princess" is feeling tremendous! Tomorrow, we shall ask for a “get out of jail pass” to go visit the archeology museum across the street she previously noted on the campus of U Penn. This morning I asked her how her neck was and she said, “Much better.” When Pat Brophy asked me today if I noticed her cracking it back today I told her only a handful of times- a dramatic improvement. Pat said, “I hope we never talk about it again.” I hope she’s right.

Shayne and Shayla will be hitting the road driving to Philadelphia Friday night! Yes, we shall all four be together for the weekend!! It appears "the Princess" is ready to watch “Chicken Little” now. Thanks for checking in with us at the Taj Mahal, gotta go!

A Kick in the Pants

When I glanced out the window of the Ronald House at 6:45 AM and saw Mr. Grant already waiting out in his van for us (35 minutes early), I couldn’t believe his kindness. I panicked, then quickly hopped in the shower while mom got Christi ready and soon we were off to CHOP. (Well…….after she opened a sweet package waiting for her at the Ronald House! I somehow knew Tim would understand!) Daily I’m reminded of His goodness and His work of Angels on earth doing good things for others. We have been blessed beyond belief. Thank you to all of our “unseen” helpers getting us through each day of this journey! Thank you for loving our family!

The results of this morning’s CT scan were not at all what we had hoped and prayed for. Although not at all unexpected, right now I feel like it’s “kick me when I’m down,” (You see earlier today I received her blood counts and saw that her LDH is higher than it was last week. Disheartening to say the very least.) Regarding today’s CT scan:

“At least seven new lesions are present within the liver. Six of these are identified in the right lobe, with one lesion in the lateral segment of the left lob. These are consistent with metastases neuroblastoma.” (Dear God, Why? Why? Why?)

Now I remind myself that today’s CT scan was compared to her last CT scan (which was clean) back in December of 2005. Dr. Maris wasn’t certain why “the liver” didn’t light up on her MIBG scan of February 1st; however, he did remind me that she had so much disease then that perhaps it just didn’t stick out with everything else lighting up back then. He said that everything else resolved so it’d be odd if that wasn’t the case with the liver too. (Well, I’ve been around NBIV relapsed/refractory disease too long. I KNOW the liver doesn’t always respond the way the rest of the body does to treatment and I know that once it’s spread to your liver, you’re typically done soon. I’m not trying to sound negative here; however, I have lived this disease 24/7 for the past 3 ½ years and quite frankly I’m downright scared and fearful.) Additionally, he told me that she had a 70-80% response while last week with Aunt Marty he said 90%. Ugh! On a positive note, I asked him if he felt that her disease would be further reduced by doing a second round of TVD and he said that he fully expected it to. (We pray he’s right.)

Finally to explain my fear, for the past 3-4 days I’ve noticed Christi’s been arching her head back and trying to snap or crack her neck. When I asked her why back at home she told me it just felt like it needed to be cracked and then it felt better. While observing her today she did it a few times each hour so I felt I’d better show our sweet NP Pat Brophy. Of course she wasn’t thrilled as her face indicated to me, and she said exactly what I thought, “It doesn’t change anything we’re going to start today.” Late this afternoon her chemo finally started over in the day hospital and then we were moved into her room (3 South, room 24). She will be here until she's discharged on Monday to go back to the Ronald House for most likely two additional weeks.

This is the nicest room we’ve ever stayed in. It’s huge with hardwood floors, a computer with Internet access and purple walls. It’s great the way CHOP tries to camouflage this place into a resort when really it’s a brutal battlefield where pediatrics and professionals brave the most vicious and conniving of all enemies – cancer.

Today, during the many hours spent waiting for appointments and her chemo to begin, Mom and I read “The Secret Garden” (Thanks, Werling Cheerleaders…..and Tom, hee hee) to Christi and to a fellow 4th grade cancer fighter she met here in January. Mom located the DVD of it here at the hospital and we had planned to have “Movie Night” up here on the 3South tonight, but the treatment got the best of sweet Tara and she crashed hours ago…..hopefully tomorrow before she heads for home. Christi takes great delight in having friends here to play with and girls her age are very hard to come by. On the plane she told me, “This time if there’s a kid my age in the playroom I’m going to go right up to them and ask them to play.” (Of course, she’s too shy to do that, but to see Tara in the waiting room today was great since they’d met before.)



Tonight brought great joy as we hooked up the new web cams (Thanks, sweet Arnolds!!) and were able to see and have a lengthy (live) chat and viewing with Shayne and Shayla back home thanks to free Internet here at the hospital-and to sweet and generous friends back home. When Shayla held up Buckeye and then Buttercup so Christi could see her cats, I cried. (And when sweet Buckeye ran across the piano keys, Christi bent over laughing soooooooooooooo hard!) Praise God for technology-bringing our family together in the midst of this battle and for sweet Angels on earth for getting us through each day.

A Day in the Life of Christi

Tuesday, March 21st:
6:45 AM wake up
7:30 in school and loving it
3:00 PM leave school
3:30 drop off Shayla with Nee Nee, depart for airport
5:00 zip through McDonalds
5:15 arrive at CMH (Columbus Airport)
5:30 make security actually smile by whipping off hat with hair
5:45 watch a Brady Bunch DVD on lap top
6:30 board plane, continue making friendship bracelets
7:30 leave CMH (25 minutes late- due to snow and ice)
8:30 make a very tight connection at DTW (Detroit airport)
10:30 arrive at PHL (Philly airport)
10:40 hail cab
11:00 arrive outside of Ronald gates and see Grandma Nonee!
12:00 AM Mommy insists Christi say her prayers and go to bed (despite how much fun she’s having giggling with Grandma) as we have a 7:15 AM pick up from an Angel on earth named Tim Grant.

Thank you, dear Aunt Maxine Thomas for not only providing Shayne and Christi with the wonderful Thomas family summer sausage recipe they made over the weekend, but also for attending Mason’s visitation with Shayne late last night. We love you!

Shayne was also able to stop and visit with his wonderful Grandma in Crestline and showed her how to get to the blog. After hours of reading today to catch up, she’ll probably get to this entry so, “Hi Grandma!! I love you!!”

Precious Days at Home

We spent the weekend enjoying one another’s company and in sadness over Mason’s death. Shayne is going to be able to attend his calling hours after he drops Christi & I off at the Columbus airport tomorrow night.

Saturday morning, the girls found a hamster, which we thought was just sleeping Friday night, to be dead. The other one appears to be fine. Shayla quietly cried with huge tears at many points throughout the weekend. She wrapped it up and decorated its burial box. We prayed together and Shayne and I read some books about pets’ deaths to help Shayla cope.

Our beautician, Cindy, trimmed the bangs in Christi’s hat with hair and it really looks cute and very realistic now. (During church she kept taking it off and putting it back on I’m certain much to the shock of some sitting behind her.) So funny!

I was happy to be at work today while Grandma Nee Nee (Shayne’s awesome mom) tended to the girls. (It was "Teacher in-service day" much to Christi’s disappointment; she wanted to go to school.)

Christi continues to feel VERY well and we continue to be filled with gratitude. We don't ever take a painfree day for granted! We know this upcoming round of chemo is going to hit her extremely hard and she soon won’t be feeling well at all. We’ll fully enjoy these last precious days being together at home.

PHOTO CAPTION: Christi and beautiful Buckeye (Buttercup and Buckeye are getting along "ok", but not great. We're hearing far fewer "hisses" than last time we were home.)

Until We Meet Again

Mason Clark Ream, age 12, died peacefully at home surrounded by his family on March 18, 2006 after a 3½ year battle with cancer.

The son of Bradley Clark Ream and Anita Long Ream, Mason had lived in Shelby since his birth on February 15, 1994. He was a sixth grade student at Central School Intermediate where he was a member of the student council and on the Honor Roll. Mason attended the Shelby First United Methodist Church where he was baptized as an infant, participated in Junior Church, and was an acolyte. Mason participated in numerous sports and had been a member of the Shelby Jammers basketball team since first grade.

Mason had many amazing opportunities during his short life, such as hiking an active volcano, swimming with dolphins, meeting sports celebrities, and playing basketball with the OSU men's team. However, one of the most special opportunities he had was growing up in Shelby surrounded by the love and compassion that a small town has to offer. Mason was happiest when he was watching the Whippets compete, especially in his favorite sport, basketball. He loved being a part of the Shelby school system where he felt loved and supported by the students and staff.

Mason's participation in numerous clinical trials at Children's Hospital of Philadelphia will help researchers develop more effective treatments for neuroblastoma, a rare childhood cancer. That contribution to science, along with his steadfast courage and beautiful smile, are a legacy of which his family is proud.

Funeral services will be held 2:30PM Wednesday, March 22, 2006 from the First Church of God, 3616 St Rt 39 S, Shelby. Reverend Gail Angel, his pastor, will officiate with interment in Oakland Cemetery. Friends may call at the First Church of God Tuesday, March 21, 2006 from 2:00 - 4:00 and 6:00 - 8:00 PM. In lieu of flowers, memorial expressions may be made in Mason's name to the Shelby Athletic Boosters Field House Fund or Central School Intermediate PTO. Online condolences may be left for the family at www.barkdullfuneralhome.com.

With a heavy heart, I ask for Christi's supporters to please lift up a most wonderful family - the Ream Team from Shelby, Ohio. Their son, Mason, was diagnosed with neuroblastoma at Children's Columbus just weeks before Christi and sadly he earned his Angel wings about 9:00 this morning. Because of many commonalities (parents both teachers, persistant disease which led them to CHOP, etc.) we consider them family and are just heartbroken that their wonderful son was taken from them so young. I hope I am able to somehow make it to the calling hours before we fly out Tuesday. Mason will forever live on in our hearts and minds! Rest in peace, sweet Mason and please pray for Mason's parents and sisters, including his twin.

(PHOTO CAPTION: Mason with Brad & Anita just weeks ago)

"God's Lent Child"
“I’ll lend you for a little while
A child of mine,” God said
“for you to love the while he lives,
And mourn for when he’s dead.
It may be six or seven years
Or forty two or three..
But will you, till I call him back,
Take care of him for me?

He’ll bring his charms to gladden you
And – (should his stay be brief) –
You’ll have his lovely memories
As a solace for your grief.

I cannot promise he will stay,
Since all from earth returns;
But there are lessons taught below
I want this child to learn.
I’ve looked the whole world over
In my search for teachers true
And from the things that crowd life’s lane
I have chosen you.

Now will you give him all your love?
Not think the labor vain?
Nor hate me when I come to take
This Lent Child back again?”

“I fancied that I heard them say –
“Dear Lord, Thy will be done
For all the joys Thy Child will bring
The risk of grief we’ll run.
We will shelter him with tenderness,
We’ll love him while we may
And for the happiness we’ve known
Forever grateful stay.

But should Thy angel call for him,
Much sooner than we’ve planned,
We’ll brave the bitter grief that comes
And try to understand.”

Back in School

What joy for all three of us to be back in school together today!! Christi wore her hat with hair attached; however, I learned she took it off and on throughout the day. She immediately told me after school that one kid made fun of her at recess for being bald, but then she giggled and said, "Only one! There are a lot of kids on the playground." (Not too bad, I guess!)

She continues to feel very well and we're grateful for that. I'm also grateful that Dr. Maris decided to "tank up her platelets" before we left so that we don't even need to have her blood counts checked this week. Ahhhh!

Tonight I just paid for our return plane tickets (Tuesday, after school, March 21st).

My conversation with Dr. Maris yesterday was the shortest ever. He told me it was a dramatic response. Of course, I was thrilled - but started to pick out little things I noticed until he soon said, "90% of the stuff is gone," which hushed me immediately! I thought the MIBG scan looked much improved; however, I did point out a new spot. (I think on her liver.) Dr. Maris left to check the scan again and came back and told me it's too low to be the liver or adreanal gland, or a rib but it is lighting up in one bright spot. Therefore, they'll do a full abdomen CT scan and find out where it is and if it is neuroblastoma before starting the chemo. (Nurse Practitioner Pat Brophy called me tonight to tell me it's set for 8:30 AM on Wednesday, March 22nd.)

We celebrate this tremendous news; yet, we know it's a long way from gone. Spots remain in her: skull, ribs and legs. We also know how things can change on a dime; however, for now we celebrate!! Dr. Maris's plan is to do two more very hard rounds of high dose chemo (TVD starting March 22nd) and then to switch to a clinical trial for minimial residual disease if she continues to respond. We hope to get her there with two more rounds of chemo; yet, we fully realize that she's had great intial
responses in the past; they just don't last.

Thanks for lifting her up in prayer! We've been richly blessed!

There's No Place Like It!!

WITH RICH & ANDREA TRAUNERO
THANKS, ANGEL FLIGHT: Our connection between hope and home!

With the talent and skills of the finest of pilots, Rich safely flew us home against tremendous headwinds last night while Andrea cared for us with the compassion and thoughtfulness I've witnessed her perform at their funeral home. (The Trauneros had a terribly long day!) We safely arrived in good old Tiffin last night about 10:30 PM. When my door was opened in the darkness, I could hear sweet little Shayla telling me she loved and missed me. The girls happily played together until midnight. I'm heading off to work now and Shayne or Grandma will bring the girls once they awaken. There's no place like home!

BEING TREATED LIKE ROCK STARS ON THE PRIVATE PLANE!


GOODBYE, PHILADELPHIA!

Flying High!

Not only are we flying home in about two hours, but we will be flying home high! Dr. Maris informed us that "90% of the stuff is gone"! We Praise Him!

She's getting a platelet transfusion while Aunt Marty will hustle back to the Ronald House to clean and check out of our room. We will be home for one week! Thank you partners in prayer!!

Almost Home!

We are all packed up here at the Ronald House, Mr. Traunero is "on call" and as soon as Dr. Maris gives us the word tomorrow, Rich will fly us back to Tiffin!! While we won't know until tomorrow, we will most likely be home for about a week before returning for more chemo. Christi has been very homesick (or should I say "pet and school" sick?) in recent days and we are thrilled to be returning home to Shayne and Shayla and to school on Thursday. We've spent 37 days in Philadelphia since Jan. 9th; it's time to get back home!
Today after our appointments at CHOP, we walked down to the Academy of Natural Sciences (photo)where Christi happily showed Aunt Marty all around.



From The Trauneros
When Angela calls and gives us the great news that she, Christi, and her aunt can come home tomorrow, I thought that you would like to be able to watch our plane fly to Philly and back again. The site is called Flight Aware and it will track any specific plane, (General Aviation or Commercial) anywhere it flies in the United States. Go to www.flightaware.com and enter our registration number, in the white box titled, Flight Tracker (beside Flight/Tail # ) in the mid left corner. From Tiffin to Philly we will be N2180F then from Philly to Tiffin it will be NGF80F (Angel flight number is different even though it is the same plane.)

Transfusion – again!

PHOTO: Check out the OSU Scrubs! (Thanks, dear Laura!) Soooooo cute!

Having my aunt (and my Godmother) here has been an incredible blessing! Today Christi’s blood counts informed us that she needed another platelet transfusion. I also learned that her LDH has unfortunately jumped up by about 160, ugh! I had tried to brush off her comments of off and on headaches over the past three days, but sadly the LDH is “the indicator” for Christi and I am just ill about what it most likely means. Receiving the print out of the blood counts had me page Nurse Practitioner Pat with my questions.

Q-How does the Nulasta know when to turn off? Her white count is now 9 and her ANC is nearly 6,500! (Wow!) Unfortunately, with that one injection she’s now experiencing leg pain, rib pain and the shortness of breath. (“Mom, I think I’m just too big for my lungs. I can’t get enough air.) A-“It stops working when the white count rises and it should be stopping now.”

Q-What does the LDH level going up so soon after chemo mean? A-“It means I’m glad we’re starting chemo soon.”

Q-When? A-“As soon as her platelets are coming up on their own.”

Q-How is that determined? A-“She needs to keep them up to 20 on her own for one week after a transfusion so we won’t know until Monday if she can start chemo on the 20th or not.”

Q-Can we go home on Wednesday after her MIBG scan and meeting with Dr. Maris and get any blood and platelet transfusions she may need at home and be back in school on Thursday and Friday? A-“I’ll talk with Dr. Maris, but I don’t see why not and after you find out her counts on Monday we’ll know if we can start her chemo maybe on Wednesday the 22nd instead since it is going to be the hard hitting chemo again that needs to be done inpatient. You could go to school and work for two more days that way too. I’ll email you after I hear from Dr. Maris.”

So that’ where we stand! Today Aunt Marty treated us to the “Curious George” movie which we all highly recommend. Tonight we shall make Buckeye candies and Christi will probably finish wiping us out in the Monopoly game we started last night.

As always, prayers appreciated! Although not unexpected, today’s blood counts and new reports of headaches bring me tremendous sadness.

Easterbread House!

Due to Christi having weeks of radiation treatments which I scheduled for after school in December and having the flu twice, Great Aunt Marty King and Christi weren't able to get together for their annual Gingerbread House making so Great Aunt Marty brought her supplies to the Philly Ronald House and they made an "Easterbread House" instead. (So, sweet! Thanks, Marty!)

Thomas Two

Boy, you guys are harsh! (smile) Soooooooooo sorry for the silence regarding updates on my part– you’ve certainly not been silent with your emails and phone calls! I’ve been preoccupied with other matters (not related to Christi’s health). Before I leave that topic let me please share my gratitude for your unbelievable outpouring of love, support and offers of help this week. Enough for now about our “distraction” and on to the important task at hand – saving Christi’s life!

On Tuesday when Christi sadly asked for the umpteeth time, “Can we please just go home for a few days?” I explained that last minute flights were typically over $500 each ticket and we really shouldn’t do that any more, but not just because of the money, but mainly due to having an ANC of zero. She begged, “Mom, I’ll even fly in a teeny tiny plane; I won’t get car sick this time.” So, assuming her counts would be up and Dr. Maris would agree it was safe, I called on Tuesday and lined up a pilot to fly us into the Tiffin airport on Wednesday night so that we’d be back at school on Thursday morning.

So much for high hopes, her counts came back much to my surprise that she needed a transfusion and that her ANC was still zero, X$%*&!!!! I knew I had to fess up. I explained to Dr. Maris that I asked a pilot to fly in and to take us home in a few hours to and he told me bluntly that it would be life-threatening for Christi to be away from the hospital during these next few days. He said she looks fine now, but in one hour it all can change and fever can set in, she may need blood; it’s too dangerous. He told me how this is hard for any parent, but even more so when you’re away from the other half of your family and 500 miles from home and coping with the realities that we are enduring. He reminded me that most hospitals would have her inpatient with heavy antibodiotics with these dangerously low counts, mouth sores and intermittent pain, and that adult oncologist wouldn’t believe that she were even going to be alive much longer with her counts, but he understood and could empathize with how much we want to be home and that we are very realistic and the time for Christi to enjoy life is now.

Regardless of his compassion, Dr. Maris told me to cancel the flight and not to risk Christi’s life even if we were desperate to return home. He went on to say, “I’ll be very honest with you. When you brought her in just weeks ago with such rapid progression, I was gravely worried. I didn’t know what was going to happen.” (So, now I’m defensive thinking, “What?? After being her onc for nearly 3 years he’s just now “worried”. Please join my “worried club” where I’ve lived the death/life line 24/7 for 3 ½ years.) He said, “What would you do if that happened again, or if she gets a fever? Take her to your local emergency room?” So having just been reprimanded from the great Dr. Maris, he left (He must have sent in the Social Worker as she soon appeared.) while Christi and I stayed in the room hugging and sobbing soaking in the harsh reality of our lives. Then when I finally got myself together I called Rich to tell him that we wouldn’t need him to fly us back to Tiffin that afternoon.

Later that night, Christi- the gutsy one said, “Ask Mr. Traunero if he’ll still come get us just as soon as Dr. Maris says its safe – like maybe next Wednesday. Remember - when you asked Dr. Maris if we could move up my tests and scans to get us home, he said maybe next Wednesday. It’ll be a 50/50 gamble depending on my counts. Could you call and ask him?” I happily informed her that not only had I already set this up with Mr. Traunero for next Wednesday-pending good weather, but also that his 4th grade daughter was going to pick out some DVD’s for Christi to watch on the flight home!! So, she got a transfusion and I called Liz Scott to take her up on her offer…..

Earlier Liz declared that Wednesday night was “Girls’ Night Out” and she was taking us out to the suburbs. (Earlier I told Liz, “Oh, I think we’re going to be flying home Wednesday night.”) So, as only Liz could understand, I called her and asked if the offer still stood. Christi and I had a very nice evening out of the city. While I was distracted receiving phone calls from folks back home much of the evening, Liz managed to take off with and spoil Christi – candy store, toy store, and won’t Buckeye be the cutest cat in town now that she’ll be sporting a pink, velvet collar with “Buckeye” in rhinestones?! (Yes, I kid you not!) I know the evening must have been very hard on Liz as she and Alex enjoyed going to that very same mall (King of Prussia) so many times together. I know Liz “gets it” and I appreciate her night with us more than she’ll ever know- even if I wasn’t the best of company that night. We really appreciate the Scott’s hard work they do with Alex’s Lemonade Stand – trying to cure this wicked beast and hope that Christi and I will be able to volunteer with the foundation some day soon. (And as only a fellow cancer mom would do, while Christi got car sick Liz didn’t flinch at all, she just kept on driving down the highway most likely knowing how neat and tidy a cancer kid is after years of coping with it – unlike taxi drivers who get nervous.)

Thursday the Ronald House was offering evening tickets to see a Seaseme Street Live Elmo show so I signed up – not realizing how far away it was (a $20.00 cab ride they told me). Soooooooo, don’t tell Dr. Maris that I took my daughter – yes the one without an immune system and figured out the subway. (Thanks, Bianca – great directions!!) The show was cute. (OK, I thought it was “cute”. My 8 year old traveling companion had more fun watching the cute little three year olds dancing in the aisles – and actually poking fun at the Sesame Street characters.) And now that we learned how to take the subway – look out Philadelphia (and close your eyes, Dr. Maris! You may be uptight, but we’re living life NOW!).

(PHOTO CAPTION: Commuter Christi conquers the subway!)


I miss Shayla and Shayne so much! The girls had a great chat together Thursday night, but Christi choked up when she learned that Shayla was going with “their” Girl Scout troop this weekend to the Build – a – Bear store in Toledo. With her hand cupped over the phone, she said with tears to me, “Mom, I can’t go!” I told her to tell Shayla that she was happy for her and to have fun. Oh, this just doesn’t ever get any easier. How I wish the “Thomas Two” were together as the “Thomas team” instead. I have been away from Shayla the majority of the year and it rips my heart.

On Friday, I told myself (once again) to let Dr. Maris call the shots and not to try to get home like I’ve been doing time and time again, being so disappointed every time. “You can’t live both lives. You can’t save hers and try to have one yourself right now. I can’t keep you here, but I can tell you what’s in her best medical interest and that is to remain here where I can see her and provide her with treatments you don’t have available in your home state,” he told me – while actually trying to comfort me on Wednesday. Well, I learned the guy knows what he’s talking about!

Friday consisted of nine long hours spent at the hospital as she got her blood counts checked and wouldn’t you know it – she needed a blood transfusion. Ugh! (Yet, silently, I praised God for leading us to such a wonderful doctor and for giving Dr. Maris the wisdom and strength to sit me down and tell me I wasn’t leaving the city even if they were not the words I wanted to hear.) During her transfusion Friday we played an awesome board book game (Thanks, Dale & Sandy!) and we read. At one point I noticed she was wiping tears away. Soon she said, “Mom, I can’t read this book anymore. The family is getting their new cat and it just makes me miss Buttercup and Buckeye too much.” She really wants to get home; at one point this week she asked the social worker, “Do you think I’ll be home by my birthday?” (May 12th) The social worker responded that she was the last person who would know that answer. (I do believe we’ll be home next Wednesday night and possibly for eleven days, but we’ll see what happens with Christi’s counts.)

My wonderful Aunt Marty flew in yesterday. With again record breaking temps we enjoyed the 20 minute sunny walk down to the train station to get her back to the Ronald House. Christi was getting hot in her stroller and then stated, "I don't care what anyone thinks, I'm hot," as she removed her cap and let her bald little head out. Aunt Marty will be here through Thursday; what a blessing! This morning we'll walk to church and the Ronald House gave us tickets to see the Harlem Globtrotters tonight - so we'll once again venture out on the subway.

I can’t even tell you how much the help of love and compassion our family, friends and complete strangers have been, especially in recent days. May God richly bless you all!

Sister Act

The Shayla update: She is going to school, gymnastics, Ballet, and religion thanks to transportation provided by Grandma Nee Nee. We are very fortunate to have my mom helping out.

Our bedtime stories have been the Disney Fairy Books. Tonight Shayla decided that we were in Pixie Hollow and she was going to discover her fairy talent. I suggested that her fairy talent could be dish washing. So she tried it! Worked out well because I got a couple pots scrubbed before she decided that maybe her talent was with Hamsters.

She answered the phone tonight when Angela called by saying "How's Christi doing?" so selfless! Shayla and Christi talked on the phone for about an hour before bed. I video taped them talking so that Shayla could have a reflection of what their relationship was at this time. Kind of hard to believe that they have been separated almost all of 2006.

Someday, regardless of how things turn out for her sister, Shayla is going to step out from Christi's shadow. Hopefully, she will embrace all that has transpired and turn it into something positive.

Christi and Angela are managing OK. Christi's counts have not come up as of yet. Her attitude seemed chipper tonight on the phone...so far no fever. Angela's priorities are in the right place, she is with Christi. So sad that she must leave so many of her other passions alone for now. It is unfair that she is not with the junior high kids on the second floor or tumbling the cheerleaders at lunch nor presiding over the NWOEA awards banquet.

We'll update more soon.
Shayne

Animal Lover's Afternoon

The sweetest of sweethearts invited Christi back to the Animal Hospital at Penn today. As you can see, Christi had the time of her life! The staff will never know how happy they made Christi! I think the pictures say it all! THANK YOU for allowing Christi this incredibly special treat today! (Thanks, dear Jodi!!)

She needed the wheelchair as she’s been having bone pain in her legs which I attribute to being a side effect from the Nulasta. Tonight she’s saying that now her stomach hurts in the same manner. Regardless, I’ll be happy to be meeting with Dr. Maris at the hospital tomorrow. So far, no fever!

As I rolled her away from the animal hospital I asked her if she wanted to stroll or go right back to Ronald. She said we could stroll so I took off. Soon she was pointing to her left – to her favorite used book store. I asked if she really wanted to go as I had to lift her heavy carriage up some steps; she did – so I did. And so glad am I we did! You see after reading one chapter of a book in a chapter collection at the hospital, she wanted to read the rest of the one book. She asked for it at the Barnes & Noble on campus and learned it was an out of print book. Today’s used bookstore has a tremendous adult section; however, their children’s section is only about 100 books I estimate. Well, much to our delight and amazement they had that book, and it was a mere $1.75!! “This proves it; there is a higher Being, ” I went downstairs and told the store owner who follows Christi’s website. We’re currently on chapter four!

Goodbye, Shayne

“I’m glad dad came out for three days; he’s a lot of fun,” said Christi. I couldn’t agree more! This morning he took Christi to the hospital so that I could finalize a few computer things I needed to do.

Her blood counts were as follows:
0.4 white (VERY low, no ability to fight infection)
10.6 hgb. (low)
29 platelets (low)
0 ANC (YIKES, but no surprise!)
536 LDH (Even lower than last week. Praise God!)

Having planned to stay for a transfusion (or two) it was like a special bonus to be released from the hospital! Christi and Shayne went to lunch at Chili’s and I met up with them there. Then it was on to a park on the campus of UPenn to try to fly the cheapo kite they purchased (no such luck despite many hilarious running attempts by both Christi & Shayne). All too soon it was time for Shayne to walk over to the train station to get to the airport while I pushed Christi’s stroller the opposite direction back here to the wonderful Ronald McDonald House.

When I spoke with the wonderful nurse practitioner, Pat, she told me that the next 2-3 days will be pivotal. That’s when we’ll know if her counts are going to go up or down. She reminded me of the rules of fever and asked that I call and get her right to the hospital when/if the fever begins. We pray that Christi avoids fever and that her counts go up, up and away (unlike the kite).

Today was also a sweet surprise of running into a Christi supporter. Supposedly, this is the fifth largest city in the USA, but things like that make you feel like it’s just a small little neighborhood here! Also, thanks to Kelli Green of Cinci!

Making Memories

St. Agatha’s - St. James’ Church was beautiful for mass this morning, as always. After lunch, Christi wanted to take Shayne to Franklin Institute to “show Daddy the giant heart” so we again put our COSI membership to good use and enjoyed the afternoon at the science center after a long, cold walk there. Christi’s stomach was queasy so instead of taking a cab back as we had planned we walked back to the Ronald House – close to two uphill miles with the strong wind blowing. We could only laugh about the good work out we were getting and wondered how Aunt Marty was doing………..

Today was the Arnold “Pump and Run” event in Columbus which Marty and Shayne were both registered to compete in. Aunt Marty did a great job and we’re very proud of her!!! (Because Shayne wasn’t there Jeff registered for Shayne and ran a bit with Shayne’s number on it which made us laugh here in Philadelphia today!)

So far, no fever and Christi continues to feel very well. I expect that she will need a platelet transfusion tomorrow and with the look of her pale lips, it won’t surprise me if she needs a blood transfusion too. We’ve thoroughly been blessed with Shayne’s presence this weekend and I’m certain we’ll both be very sad when he needs to leave us tomorrow. (He'll update the blog with pics when he get home and gets a chance. We're unable to add them here at the Ronald House.)

Enjoying Philadelphia

I won’t say “the shot” was screamless today (it wasn’t); however, as you can see once it was over we headed out to enjoy the day together. We pushed Christi about 20 blocks in her jogging stroller- all covered up with a beautiful, soft “cat” blanket sent here by a sweet church group. At the Liberty Street shops we purchased some of the (miracle in our minds) Body Butter from “The Body Shop” since we accidentally left it in her room and all other lotions seem to burn Christi’s skin. (One coating and her little dried out hands are much improved already! Whew!) After our mission was complete, we enjoyed the book store together and then walked to the Market Street Shopping to get her a new pair of tennis shoes. (Until we got out here I didn’t realize her shoes were too tight and hurting her feet.) She now has new shoes with “toe room”. It’s such a blessing to have the most wonderful husband and daddy here with us!

Bon Voyage!

With Elizabeth steering (whew!) our beautiful Explorer friends set sail yesterday afternoon as Christi was in the midst of her chemo infusion. We were happy when they called last night to let us know they safely reached the Island and were back tending to the goats. We will forever be indebted to them for showering us with love, support and giggles!

Christi, a big girl now, received two units of blood late yesterday afternoon. She said, “I wonder who donated this blood for me.” We’ll never know, but we did lift them up in prayer. The blood really perked her up. She told me how much better she felt and I realized she had no intentions of slowing down and going to bed when we got back to Ronald so she worked on some drawing projects while I took a nap. (I do feel better because one day this week Jenn said, “I didn’t do anything, but sit around all day and I’m exhausted.” Whew! I know it sounds crazy, but the hospital scene does make for a grueling day.)

In the midst of Thursday night’s hustle and bustle, I called Southwest Airlines to cancel our flights back home. Thankfully, we had changeable tickets so there was no charge to change our two tickets home into one roundtrip ticket for Shayne!!! Yes, Daddy is here through Monday night! That was just the pick-me-up I needed! (And without a doubt, it is always harder for the parent at home!) Christi and I joked with the nurses, “Who knows what our clothes will look like next week with Daddy bringing the rest of our stuff,” but he did fine! (The only thing I asked for that he didn’t bring was Shayla!)

Last night the phone call came in that Shayne was here at the Ronald house, much to my surprise. (My thrifty husband was going to take the train to the University and then do the 20 minute huff to the Ronald House even though I warned him it was only 34 degrees and very windy and taking the train is never fast.) Apparently, Shayne met a "Philadelphia" lawyer on the flight who offered to drive him. (When the kind man called his wife Shayne said, “Don’t tell her you picked up a hitchhiker. Wives don’t like that sort of thing.”) Indeed there are Angels doing God’s work on earth!

Christi was sooooooooooo happy to see her wonderful Daddy. We played “Clue Jr.” and when I went to sleep they had just started the “Trivial Pursuit Jr.” game on the floor of our room. Today Daddy will give her “the shot” which is scheduled to arrive before noon by UPS. She's very anxious about it asking if it will hurt more because it's one instead of many and asking what will happen if it doesn't work. "Not every medicine works on every body," she has reminded me. I've assured her, "It's going to work."

PRAYER REQUEST: We pray that the shot arrives, and that she doesn’t get a fever with this round of chemo.

Adventure Interrupted

I knew things were going entirely too well……… except for a queasy morning stomach, the chemo today was a breeze and this afternoon we met up with the wonderful Mr. Grant at the US Mint where we were even treated to “rock star” parking – if I can borrow the exact words from Jenn and Traci. Christi was excited about returning to the US Constitution Center– just across the street from the Mint because she didn’t have enough time there this summer.

The special Franklin exhibit was excellent. After spending about 30 minutes there I decided to call the hospital because I was curious about her blood counts. When I heard a hemoglobin of “five” and a “did we know about this”, etc. I knew things were not well. I told them that we were treated to a special trip we had just started enjoying and that she was zipping around the museum, not cold and her lips look fine so could we please stay until 5:00 when it closed and then come for her blood transfusion? Well, that just got me a “Someone will call you back.” (Her hgb. was 9.5 on Monday and with no outward signs of bleeding there had to be internal bleeding with a hgb. now of 5.0. I was getting worried.) Soon the call came back from the Nurse Practitioner telling me how about a compromise of enjoying the museum for 45 more minutes and then getting right back to the hospital because they wanted to re-test her hemoglobin because it was such a jump and if it really was five it was an emergency situation; she was having internal bleeding. So I told Christi that we would go back to the Constitution Center when we could put on the Supreme Court Justice robes and read and decide upon those important cases and spend as much time as she wants there, but right now we had to turn around and rush back to CHOP. (She and Harriet did manage to get sworn in as US Presidents as we hustled out the door.)

Thankfully, after it was retested it was 7.6 indicating that yes she needs a blood transfusion, but that it can wait until morning. Knowing that may interfere with our fights home for tomorrow, I asked if we should even go home fearing what the answer would be. (Shayne mentioned, “They’re not going to let you go home now.” when I first called him at the Constitution Center in a panic today.) Pat explained with her ANC being so low already, her counts now falling fast and some other things that it would be dangerous to return home for the five days like we had planned. As usual, Christi took the news better than I. I’m really sad. Even if we weren’t going home for long – we were going home. UGH! How I hate this evil cancer monster!

Being greeted by the sweet social worker here at Ronald we learned that there are a few families with “stomach viruses” staying here now. With Christi having a very weakened immune system, she should stay in our room; therefore, Christi will be permitted to eat in our room. (She was happy about that! Watching TV and eating – wow!) Tomorrow when she realizes that Harriet and Elizabeth will be setting sail back to the island, I’m certain there will be big tears – from all four of us. I can't even explain the comfort, support and blessings they have been to me this entire week. (And making the nurses laugh when looking at the three of them putting "tongue tatatoos" on their tongues at the hospital. Soooooooo funny!)

White: 1.4 (low)
Hgb. 7.6 (low) Transfusion tomorrow
Platelets 50 (low) Transfusion probably on Monday here at CHOP
ANC 560 (Yikes! Falling fast! Praying a fever doesn’t accompany it! She does so much better when she’s not in the hospital!)

**Shayne's been very busy with work and with Shayla. When/if time permits, he'll add some photos I took of Christi and the Explorers to these past two entries.

Now of to cancel our flights!

Chemo, Ashes & Science

A nearly identical experience as yesterday- morning nausea followed by Zofran to help calm it followed by a smooth day of chemo at CHOP’s day hospital. Dr. Maris stopped by and said that it was obvious that she responded to the chemo; however, he wants to scan before the third round. “Just because she looks great on the outside doesn’t mean internally things have also improved.” I’m confident they have, but it’ll be nice to get a clear picture (well as clear as an MIBG scan gave provide) on Friday, March 16th. It is of his current line of thinking to hit her with more chemo beginning March 20th. He’s particularly eyeing the harsh carbo/VP-16 chemos next, but we’ll need to watch her platelets and hope that she can continue to make them on her own. (The etoposide is very hard on platelets.)

He believes we picked a good day to return to Philly as she should soon start to go downhill and her nadir should hit around the 8th of March. (The day we fly back here.) Her ANC will go to zero, but she shouldn’t have the mouth sore problems which result in the inability to eat to the severity she did last round as they’ve cut the dosage by 50 percent. Without a fever, she’ll escape a lengthy hospitalization so we are praying for that and we know she'll need transfusions again. (She does so much better when she’s living in this loving and wonderful Ronald McDonald House and not hospitalized.)

I did express to him that Christi wanted to talk with him about the “dreaded G shots” like she inquired about with me this morning, but she was too shy and wouldn’t share her feelings with him when the time came- so I did. I asked if I could bring her to the day hospital each day to get her “G” through her port instead of having to get a shot since we’d be living just down the street. He said he was thinking of something and he’d get back with us.

Soon he returned and told with me that Neulasta will do the same thing and it's only one injection (as opposed to the 14 doses she received last month). I shared with him that I thought that was only for older patients and he said they’ve run the clinical trials and that is about to change. Currently, it’s only given to patients who are above 40 kilos. (Christi’s currently 30 kilos.) It is given 24 hours post chemo. (Shayne will give it to her Saturday afternoon.) He told me that it is very expensive ($4,000) and he knows that our insurance company hasn't been the best about paying what they should, but that's out of his control. What he can tell me is that it is safe and it is effective. I agreed that we wanted to do it. He told me that I'll just need to sign a paper saying that it's not for pediatrics, but that I want Christi to have it anyway. Let's just say Christi was incredibly happy to learn that there would only be one shot.

After her chemos were done dripping, a Sister came by and gave us our ashes for Holy Ash Wednesday. Then we were off to the Franklin Institute. Christi asked me if it was Phildelphia's COSI. I told her yes, but once we were there we soon learned that COSI really puts it to shame. We did have a wonderful time and the museum is really special, just not the country's best like we're spoiled by. Christi continues to feel very well right now - of course like I told Shayne today, "With Traci and Jenn catering to every need and whim, how could she not be feeling well?!!"

Tonight brought "Vets' Pes" at Ronald and Christi really enjoyed the two doggies - (OK, Traci and Jenn did too.) Tomorrow should be a repeat of today- chemo and an excursion. God is good!