Pedaling with a Purpose

Hey there faithful Christi supporters. This is your "Webmaster" here with an important announcement (and request for your support). You see, I've decided to race my mountain bike in Michigan's only 100-mile mountain bike race, the Lumberjack 100. The event is going to be held on Saturday, June 17th in northern Michigan (yes, that means hills!) and I want you to help...

Don't worry, I'm not going to ask you to come along and pedal for me. But what I would like from you is your financial support to help motivate me for the race. You see, I've decided to dedicate this race to the Children's Neuroblastoma Cancer Foundation and have set up an online donation website to collect funds to benefit the CNCF. I'm sure to many of you a contribution will be MUCH more appealing than pedaling a bike in the woods for 100 miles, right?

Want to Donate?
I made a goal of raising $5,000 for CNCF and I'd love nothing more than to blow this away and far exceed this amount, but I need your help to make that happen. If you are interested in supporting me in my race and the CNCF, please visit my online site to make a contribution. There, you can learn all about the race and contribute (credit and debit cards are accepted). Or, if you prefer, you can send a check made payable to CNCF to me at my home address: 12369 Verona Rd., Battle Creek, MI 49014. The CNCF is a 501(c)(3) non-profit organization, so your donations are tax deductible to the full extent of the law.

More Information...
There is an official press release located on my new Pedaling with a Purpose (PWP) website about my cycling event that you may also want to check out to learn more. I've started PWP with the hopes of making this an annual event to benefit great charities like the CNCF and others in my community.

Final Thoughts
I picked the CNCF at the recommendation of the Thomas Team. This great organization is actually the one that brought Christi and the amazing Dr. Maris together. They met at a CNCF conference on Neuroblastoma in July of 2003 and it's a good thing they did. Those of you who spend a lot of time here at Christi's blog and on her website know all about this miracle worker. Unfortunately, due to lack of funding the CNCF is not scheduled to have a conference this year, which is quite a disappointment to anyone battling this deadly disease. Hopefully through my efforts and your generosity they will be able to hold their conference again next year.

Also, not to take anything away from the American Cancer Society, which most likely does great things for adult cancers, but when you get ready to make your contribution decisions this year here are a couple of statistics that I found interesting. Of all the monies that are raised by the Relay for Lifes, only about 7% of them actually find their way to childhood cancer research. Unfortunately 0% go towards Neuroblastoma. So, if you think you are "helping" children like Christi by supporting the ACS, think again. It's through the direct efforts of dedicated organizations like the CNCF that really put your money to use in finding a cure for this beast called Neuroblastoma.

Thanks for your support...
-Eric/Webby/The Biking Banker

Dear Mom

Dear Mom,
I hope you come home soon. I miss you. As you can see from the photo I was not very happy with Dad tonight. He made me do my homework......and take a bath. Everything was cool until then.

We worked in the yard and got all of the landscaping shaped up and did some spring cleaning-dad made me pick up some of my stuff. CAN YOU BELIEVE THAT? All of the laundry is done, we used extra bleach on all of your stuff!

My biking skills are really improving. Dad took me out on the REAL road on Friday. Today, Dad hooked the trailer onto my bike and I took the neighbor boys for rides. Bunny even got in on the action! Don't worry-even though I learned to pop a wheelie today-I won't do it when you are looking!

Every ten minutes since Friday I asked Dad to take me frog hunting. Finally, tonight we went down to the creek and caught one....only it did't work out so well because as soon as it hit the bottom of the buckket it bounced right out, back into the water....Can you even beleive we never saw that thing again?

Good thing I stayed home because I have had to feed all the cute fuzzy little animals. When its time for Buckeye to get her medicine dad needs me to catch that frisky little critter. He'd be lost with out me I tell ya.

Well I better get to bed and rest. It takes a lot of energy to ask all the questions that I do in a day.

Love you mom,
Shayla

Quality of life

Some photos just in from Christi's teacher! While it may seem absolutely crazy that we run back and forth the 500 miles to Philadelphia-these photos show what living is all about for our little fourth grader.

Another Update

Why all the updates? Christi's feeling well and she keeps asking to go to the computer area at Ronald, so here I sit. (Plus, my mom always likes to know what's going on without calling to bother me she says.)

Christi didn't want to use the wheelchair so she walked all the way (about 4 blocks) to the B&N at UPenn. We stopped once going to catch her breath and once returning to buy her a Slurpie at 7-11, but much to my surprise she did great! (And much to her surprise the B&N doesn't carry the "Hank the Cowdog" series!!) She looked puzzled at the staff member behind the counter after we inquired. Later she asked, "How could such a huge bookstore not have those good books?" She selected a very cool encylopedia style book about animals instead and so I've been hearing lots of intriguing facts all afternoon.

I see Shayne is adding some pics I've taken the past couple of days to the blog. (Mom, You can scroll down to see Christi. Her eyelashes are almost completely gone now and on the plane she pointed out to me that her eyebrows weren't very "fluffy" anymore. We should be home so she can wear the jazz and ballet costumes you altered for her last week for their pics on Saturday morning. THANKS!)

No Fever, Feeling Better

We managed to sneak through another feverless night. We praise the Lord and all of Christi's powerful prayer warriors for that! She's feeling better today and actually ate some cereal (finally). We've played many games of double solitaire and put together a puzzle so far. We're talking about heading over to the Barnes and Noble later this afternoon and I'm hoping for more Brady Bunch episodes later today since we've really enjoyed watching those old re-runs together.

This morning some awesome and compassionate teachers from a school in Philadelphia came in and prepared an incredible breakfast for the families staying here. Dining on locks and quiche, I thought for a few moments I was on a cruiseship! Christi soon brought me back to reality by whisperng, "Mom, would you quit talking so we can do something fun?" I joked back, "You know how I am with a group of teachers! I have lots of questions about their school."

This morning I spoke with Eden's great daddy (Rourke) and firmed up our plans to fly back home in his uncle's plane on Wednesday. Thankfully, Eden's fever is gone and she's feeling full of energy right now. We pray that continues and that she is once again NED! Hopefully, Dr. Maris's MIBG treatment will do that very soon!

Hello from the House that Love Built

The amazing Grants read my post and called offering to drive down to the city to give us a lift to Ronald. When I hung up I was telling the nurse about this sweet family and she asked, "Well, how exactly are you going to get to Ronald? Look at all this luggage!" (In my mind, we're light in the luggage department this time, but to each his own, smile.) I told her I'd just wait a few hours for the next Ronald shuttle. She insisted that a child without an immune system shouldn't be hanging around a hospital nor throwing up in a taxi so CHOP's sweet Security took us back to Ronald. (Whew!) I'm thinking if Christi would have been feeling well there would have been lights, sirens, whistles and much laughter about how we were off to catch the bad guys, but she sadly just looked out the window during the ride with the Officer.

Once in the very full Ronald House, where we are so lucky to have a room, she selected a YES/KNOW pad with the invisible marker for her treat from the "Welcome Wagon" and quietly worked on that for hours while I read like a mad woman. She's just not feeling like herself, yet she asked if we could borrow a wagon or something and to go the Barnes and Noble on campus tomorrow if she feels better. She wants to see if they have any more Hank the Cowdog books like the one a sweet Angel on earth sent her. (She said there's a series and there are 31 books.) There aren't any wagons at Ronald, but I do see a wheelchair I'm certain we can borrow. Hopefully, she'll be up to it.

So the good news is we have a room at Ronald and it's located next to the laundry room. And the bad news is we have a room that's located next to the (noisy) laundry room - hee hee! Seriously, we're very lucky and most grateful to have a room here at all and pending no fever we'll stay a few days! (CHOP informed me I must call a taxi if she gets a fever during the night. There's a good chance that may indeed happen, yet I'm praying she'll make it through without one.) Here's wishing you a good night!

Hello from the ER at CHOP

It's been a long morning with a lot of vomitting. (I think from her typical morning carsickness - even experienced on the train today.) We're still in the ER and waiting for her platelet transfusion then we'll be free to go back to Ronald. I'm really hoping to catch their 2:20 shuttle, but we'll see. She is NOT feeling well at all and it'll be a miserable taxi ride to the house, or a long wait until their next run at 5:20 if we don't make it. Blood counts this morning: white .3, platelets 14, hemigloban 9.2. Hopefully, the platelets will make her feel better. She devoured her American Girl magazine, but that's all she's been up for today. She hasn't been able to eat or drink anything.

Hello from the Hilton

Good morning! Little Miss Christi is still soundly sleeping and I’m too anxious to read so I’ll sit here in our hotel room and ponder yesterday’s craziness.

After blood was drawn yesterday we took off for school; however, I pulled over by the side of the road not for Christi to get carsick this time, but because she saw some baby lambs in a meadow days earlier. I knew I had to get to work, but to listen for a few minutes to oohs and giggles coming from a little girl with a very uncertain future just had to be done!

I called the hospital before my first class came in and started shaking as soon as I learned of the dangerously low numbers. I knew Dr. Maris and Pat were right and I had to get her to Philadelphia Friday night as I said I would a week ago. I called Paw Paw told him what flights I wanted and put him on booking it- little did I know it would take hours of his time, but thank God Joe put his negotiation skills to work, stuck to his guns, and got the airlines to allow me to use the credit they said months ago we had from a previously cancelled flight. My next call was to CHOP to tell them her counts and to see if her platelets needed to be transfused before we flew out. (It wasn’t quite 9:00 AM and she said she’d call Dr. Maris – later I learned he’s in California and she said he sounded very tired when she called him. Ooooohh, I’m not looking forward to Wednesday’s doctor visit! Smile.) Perhaps if you’re awakened at 5:00 AM, you’d think your patient could get to CHOP before 5:00 PM, but little did Dr. Maris know I had a literacy meeting on campus late that afternoon that I really couldn’t miss and still try to be a part of the state’s new endeavor.

I (alone) was planning to meet Traci and Jenn for dinner after I was finished on campus anyway, but I frantically called them told them what was up and asked if someone could meet me on campus and baby-sit Christi for my one hour meeting instead and then we’d zip right to the airport. Thankfully, they agreed and Jenn was waiting for us before I arrived at Ohio State.

I was a bit frazzled, but made it to the airport in plenty of time, parked in the long term lot and caught the shuttle van to the airport. As soon as the van drove away I said to Christi, “Oh no, sweetheart. I left your jogging stroller in the back of our van. I can get you around the hospital and the airports in a wheelchair, but what are we going to do without it?” She said she was feeling fine and she could walk (Oh, I hope that proves true and if she’s up and about it really puts a damper on any sight-seeing she may want to do.)

Booking our flights so late typically results in additional security screening checks so it came as no surprise when I was “selected”. Christi, the amazing trooper, just started pulling my bags off of the conveyer belt and walking them over to be opened and inspected. The sweet TSA man going through out suitcases joked, “If you didn’t have so many books, it wouldn’t take us so long to get through security.” I’m assuming he hasn’t spent much time in the ER at CHOP where you’re thankful to have a big stack of books to read and I’m also assuming he didn’t have my current Professor for class because this week we asked what our next reading assignment was he held up one the biggest of our five books and said finish this.

Our flight was uneventful and Christi drew the entire time in her Metropolitan sketch book Neetza and Caroline brought her from NYC, while I read. It was easy to catch the shuttle from the airport here to the hotel. Soon my phone was ringing. It was Tim who said, “I just happened to be in the area and wondered if you needed a ride or anything.” (Yeah, right!!! What a sweetheart! This Angel worked all day, coached his daughters’ softball game and now was driving around the airport trying to help us, unbelievable!) He was happy to learn Christi was feeling so well and he offered to bring his daughters into the city to play. While Christi would LOVE nothing more, I explained Christi doesn’t have a good immune system right now and it’d probably not be a good idea. I did ask him if he could take us and our Columbus neuroblastoma friends, back to the airport about noon on Wednesday and he responded, “You bet!” If all goes as planned, we are scheduled to fly back with the beautiful Eden Adams and her sweet mom and wonderful dad in Eden's great uncle’s little plane. Eden (Her site’s in Christi’s Clubhouse.) recently relapsed and is coming on Wednesday to have her first visit with the incredible Dr. Maris! What a blessing to have her wonderful mom call me last week and offer us a ride back with Rourke's uncle!! We pray that Eden’s fever soon breaks and that she’s able to get out here on Wednesday and we pray that Christi doesn’t get a fever and land herself inpatient.

Christi was just up and said, “I didn’t flush so you could take a look. I wiped some blood.” (That indicates very low platelets.) Needless to say, now she’s in the shower; she’ll eat breakfast I brought her and we’ll be getting the shuttle back to the airport and then catching the train into the city and walking over to CHOP. She shall end the month exactly the way she started it- in CHOP’s Emergency Room and getting platelets. Here’s wishing you a great day!

Here we go again....

Unfortunately Christi's counts have dropped rapidly.
ANC . 11
white .5
hgb. 9.8
platelets 22

Dr. Maris wants Christi in Philadelphia NOW. I have made the decision that she should continue in school today even though there is some mysterious illness that is spreading rapidly around the school and her platelets are approaching a dangerously low level. The reason is that she desparately wants to attend her Abor Day program at the park and be with her class for some other activities today. She has been denied so much I am willing to take this risk to have her live a good day. It is better to live one day like a lion than a life as a lamb.

Remind me to not regret this decision if it proves to be wrong.

Angela and Christi will finish the day out then drive to Columbus. At 8:30 they fly to Philadelphia. They should land at 9:30pm after that the plan is fluid. If she develops a fever she will go directly to the ER otherwise they are getting a hotel room near the airport.

Shayne

Still Fever Free

As you can tell from the time we're about to head out for her blood counts to be tested at our local hospital. Thankfully, Christi (and her books) crawled into bed with me last night so I was easily able to check for fever thoughout the night, which I did at least ten times. We have a hotel reservation for tonight in Philadelphia, but I'm still hoping I'll have the luxury of calling to cancel it.

Holding Our Breath

What a difference a day makes. Shayla vomitted three times during the night and I'm so thankful Grandma Nee Nee spent the night with us on the couch because she stayed with Shayla so I could go to work - where 22% of our students were out with the same symptoms today. (One of my classes had just six students in it!) My mind kept thinking that Shayla would overcome it, but that it could overcome Christi down in her classroom.

Christi just doesn't look like she did one short day ago. She says she's feeling fine and she enjoyed her full day at school, but she doesn't look right. The "chemo eyes" have appeared upon our eight year old princess. I think the nadir is hitting (or has hit). Tomorrow her blood counts will be checked at 6:45 AM. I have already walked our suitcases out to the van in case I need to book a quick plane ticket and get us to Philadelphia tomorrow; yet I hope that's not the case. Christi's looking forward to going to the park with her 4th grade class to plant a tree for Arbor Day.

I spoke at length with the great Nurse Practitioner Pat Brophy during my lunch break today. This woman is so amazing! I trust very few people regarding Christi's care and without a doubt Pat is one of the few. She's concerned that we're not planning to fly back in tomorrow. She told me our local doctor is no longer willing to sign for Christi's transfusions and there is a 50/50 chance she's going to need transfused again tomorrow. She also feels it very likely for Christi to get a fever in a matter of days. Pat also went over our scan and testing schedule for next Tuesday and Wednesday at CHOP. She agreed to mail the CT contrast to me since I'm not planning to be in Philly on Monday; however, all that could change by morning. (I know I'm crazy, but I'm still praying she'll bounce back on her own very soon.) As always, your prayers are appreciated! Thank you!

Life Savers!

When the phone message was left yesterday saying something like maybe you'll get her platelets tomorrow, maybe you won't, Shayne knew who to call. And with the wonderful Lezle on the phone at the hospital this morning making all of the arrangements, Shayne's mind was put to ease. Whew! Thankfully, Christi didn't have any problems with the transfusion and we're very grateful for the sweetheart who drove all the way to Toledo and back to get them for her; this allowed her to attend a full day of school. There is no greater joy in Christi's life!

As you can see from the photo, this lucky little lady had a GREAT day there!! She is so loved!! Thank you sweet friends! After school, Shayne took her to the hospital for a life saving platelet transfusion. (Thank you blood donors everywhere!)

I shall get her counts checked again before school on Friday morning. I will have our suitcases in my van in case we need to head to the airport after school. I have my eye on some late afternoon flights, but have yet to book anything- despite the fact I told Dr. Maris and Nurse Pat that we would return on Friday. (They want us there Wednesday or Thursday, oh, that's today!) I'm still hopeful she's going to sneak through this without a fever; she just feels so well yet! Please pray that she stays fever free and that our family can be together at home all weekend. THANK YOU!

Today I received some "galloping good news" from the Party Planners who have been "trotting" along with the preparations. If Christi's body continues to cooperate, this little cowgirl's birthday party is going to go off without a "hitch"!! THANK YOU, Grines!!

Here's another picture snapped last night of Christi and her friends warming up their recorders. (THANKS, Jenny!)

School Music Program

Platelets 24 (Transfusion needed. Normal 150-400. Possible Danger- bleeding to death.)
11.9 hemigloban (great, normal)
4.5 white (ability to fight infection. Normal- much to our surprise.)
3,680 ANC (Normal, much to our delight)

Christi continues to feel very well. We weren't able to get her platelets transfused today so it MUST be done tomorrow. If connections can be made, this can be done here in our hometown. I'll just say communication haS been a bit of a frustration today.

That wonderful dad of Christi's has been handling our health insurance fiasco. Unfortunately, we don't see an end in sight. (Did you know an insurance company can just take back money they've given to a doctor for services provided? We're absolutely amazed.)

This morning at school Christi found out that she should be able to attend the Arbor Day program with her class at the park on Friday. Her teacher, Mrs. Smith, started rearranging parts so that Christi would have a speaking part like the rest of her class. Christi said, "I don't care about my part, I'm just glad I get to be a part of it," which nearly moved me to tears. This little one is so special! I think she's got life figured out and like our Heavenly Father she can see the big picture!

Tonight was her first Spring Music Program at school. (It's for grades 4-6.) As you can see from the picture, she's pretty easy to pick out now with that little round head. Our school has the most amazing and talented music teacher!! Christi had a lot of fun singing and playing her recorder. Thanks to Grandma Nonee and Grandma Nee Nee for attending it too!

Nature Night

As you can see from the pic I just snapped out in the backyard, Christi continues to feel very well and we couldn't be more pleased. I shall get her blood counts checked before school tomorrow and see what kind of news that brings. She's very happy about her Spring Program at school tomorrow night. I'm certain you'll see a picture from it soon! The party planners have informed me that they're not "horsing around" they're making plans for some little girls to get together to celebrate a big milestone - Christi's 9th birthday! We are very blessed!

Rejoicing on Sunday

Never do we take a pain-free day for granted; Christi is still feeling amazingly well and we are most thankful! She’s had some vomiting, but that was most likely due to Daddy’s wild driving (hee hee). After having returned from many hospital trips and then gone to work in a matter of hours, I am exceptionally grateful for having the entire weekend free to unpack, catch up and repack. Frankly, the travel on top of the emotions and events of the “hospital scene” can be absolutely grueling.

While CHOP knows the day I said we’d return, I still have yet to book our flights. Christi will have her blood counts checked at the hospital very early Tuesday before we go to school. Those results will be contingent upon our plans to return. I’m still hopeful she’s going to skate through this upcoming week without a fever. Dr. Maris and Pat weren’t so optimistic and they want us to return sooner rather than later.

This afternoon the girls planted flowers and later we all read out in the backyard with the girls swinging in the hammocks. Christi and Shayla have played like the best of friends and even created a new computer name for when they play their games together- Chrishayla. Tonight Christi couldn’t locate the shampoo. She said, “Mom, I can’t find the shampoo.” I asked, “Do you really need shampoo?” and she burst into giggles saying, “I guess not. I’ll just use my American Girl shower gel.”

Later tonight Shayne will be meeting a fellow NBIV relapsed dad from New York who happens to be in town. (Small world!) We’ve had the pleasure of treating at MSKCC and at CHOP with the amazing Bryan Tressler- our hero and our inspiration backed by two incredible parents! (Bryan has been in treatment for nearly eight straight years which simply doesn’t fit this disease and which simply is a miracle in itself. Goooooo, Bryan!) He and Christi will be testing and scanning the same exact days at CHOP (May 2nd and 3rd) so I’ll get to see his sweet mom very soon too!

Shayne and I started making some tentative birthday plans in preparation for the big day. As I told Shayne today while he was waxing his truck, “I really didn’t think she was going to make it to Feb. 12th (Shayla’s birthday) much less May 12th" and he admitted he had just prayed for March 12th. Now we know May 12th is still a long way down the road in this special gal’s crazy life, but we are filled with hope! And while she doesn’t know it yet, we’ve established the theme (Thanks to my friend Lori and her two awesome daughters- Tiffany & Kelsey). I’ll just say we won’t be serving Philly cheese steaks, but maybe “Filly” cheese steaks (hee hee). Got it? Shhhh! We know our little horse lover will approve!

Thanks, Tina!

Christi made this lovely sign for Shayla's Easter present. If you look carefully and use your imagination, you can see that she spelled out "SHAYLA" with her drawings.


Christi and I have now been reunited with Shayne and Shayla, and my mom and paw paw have returned home from Florida! It's great to all be back together, even if only for less than a week. Currently, Christi's at the nursery where they went to buy some flowers and things to plant in the garden. With Christi soon to become very ill, we feel we need to move quickly.

I cannot express enough gratitude to my sister, Tina, for helping us in Philadelphia and for driving us home. (And after that killer drive, I'm now off to search for airfare.)

A Watched Pot Never Boils

Just as a watched pot never boils, Christi's blood transfusion wasn't going any faster despite my staring at the Volunteer Donor bag and the distance home wasn't going to come any sooner despite my looking at the map on my lap.

By 2:00 we were finally out on the road. My 'big, older sis' (smile) is a fabulous driver and despite the fact we are still not quite home yet, things could have been much worse. It could have rained 100% of the time instead of just 70% and an incredibly nauseous Christi, who threw up every morning due to the chemo, could have thrown up five times in Aunt Tina's van, not just four. Thankfully, when Christi feels car sick she tries to put herself to sleep as a way to cope. It worked for three of the ten hours. Praise God!! It was a very tough drive for Christi. She kept saying that she doesn't ever remember the drive ever being so long before. I pointed out that her wonderful Daddy drives straight through the night so that she can sleep the entire way; that makes the distance seem much shorter- for her. (Having spent thousands of dollars on airfare in recent months, I was incredibly grateful for the free trip home!) Regardless, we all made the best of it. Shelby is quite a little travel herself and Tina and I had a great time recalling things we did when we were younger. (Of course who could forget when we let that cat into the house?! Boy is that a funny story- now.)

Thanks to Shelby's Aunt Sue and Uncle Craig, we went to their home where Aunt Marty and Uncle Jeffy came for Christi and I. I just couldn't handle the thought of trying to drive two more hours to get home so late last night. It was midnight when we arrived. Tina and Shelby are overnighting with Sue and Craig while Christi and I are back at King's B&B&PF now. (That would be Bed and Breakfast and Pet Farm for Christi, hee hee. She's having a ball here.) Once Christi's morning stomach settles down, we'll head for home. Unfortunately, she needs to get her Neulasta shot in a matter of hours. We will use the LMX cream which is to help numb her leg, but it's still a tough shot to handle. We've offered ice in the past, but she's always declined.

At the hospital yesterday was a Volunteer Photographer taking pictures of the kids for the parents. (So sweet!) After sitting for hours, Christi and Shelby were in rare form when she got to them. At one point after she took their picture with bright flash lighting Christi said, "I saw my whole life flash before me," which made me suck in my breath knowing the circumstances, but it made everyone else roar with laughter. When she was finished with the two clowns she jokingly said, "Settle down, girls! There are sick kids here," which only caused them to laugh and tease her some more. Here's wishing you all a great day! Thank you!!

finishing up

The Falter girls and their daughters will be finishing up their important work in Philadelphia around noon today and will spend the rest of the day traversing the state of Pennsylvania. Don't tell Christi but she gets her neulasta shot tomorrow at noon....

Shayne

Fun in the City

The girls scrapbooked for a few hours during Christi's chemo infusions today. I didn't realize it, but Tina shared with me that they started that scrapbook three years ago. It's awesome! Tina and I had a good time today confusing the nurses by doing absolutely nothing. (Aparantely Shayla's not the only one who thinks we look like twins! Maybe tomorrow we'll wear matching outfits, hee hee.)

The wonderful Nurse Practitioner- Pat Brophy knows we have at least a ten hour drive home tomorrow and therefore she had the bright idea of drawing Christi's type and cross today and ordering her red blood cells for tomorrow, just in case. (She feels that Christi will need a blood transfusion and by doing all of this today she should save us at least two hours of wait time tomorrow. THANK YOU, dear Pat!!)

Tomorrow they shall draw her counts first thing and then if she has a hgb. of nine or less they'll send down for her blood. This way her transfusion should drip right after her chemo is finished and then we'll be heading off for the drive back west to the Buckeye state in the afternoon.

Pat also went over plans for our return, but I'll think about coming back later......right now I just want to get home!!! I was giving Shayla her spelling test over the phone tonight. Her teacher told me she does much better in school when I'm at home so leaving her Tuesday was very hard. Also, three of my sweet students left class and came back a minute later to give me hugs and to tell me that they hoped I'd be back soon, very touching. I can't believe I'm homesick already, but I am! If all goes as planned, we'll all three be in school all together all of next week. Nothing sounds better than that!!


We enjoyed the Franklin Institute (science center) this afternoon and then we splurged and went on the "Ride the Ducks" tour- a comical land tour past historical attractions followed by a lovely twenty minute sail on the Delaware River. I loved it! The girls are still happily blowing their "quackers" and Tina and I are still wondering where they get their energy.

Scrapbook Season: Hospital Style

With Special Prayer Warriors

Cousins!

As you can see Shelby and Tina arrived last night about an hour after we checked into the Ronald House. Due to good news, I must back up first: Christi's LDH came back at 623 (normal). YES! I literally floated the rest of the day. So much in fact that instead of hailing a cab on a beautiful day I decided to try to walk the 11+ blocks (with an incline) to the Ronald House with Christi needing the jogging stroller and I pulling two suitcases. (No one need comment on my sanity - thank you!) We made it about 6 blocks before a sweet young woman insisted on helping us to the gates of the house. (Another Angel in disguise here on earth! Thank you, dear Lord for sprinkling your earth with good people!)

Earlier while meeting with Dr. Maris I was glad Christi had her nose buried in a book. He turned his back to her and quietly said to me, "I think you know the potential for hearing loss and kidney damage with the carbo." Knowing our little jokester, she would have started teasing her poor old mother by saying, "What? I can't hear you. What?" as soon as the chemo started dripping in her yesterday. Thankfully for a soon (May 12th) to be nine year old, Dr. Maris told me it's more likely to happen with younger children. Regardless, I'll continue to pray that she suffers no loss.

Once inside the Ronald House we saw the preparations being made for their annual "Volunteer Appreciation Night". I told the workers, "Perfect! There could be no family more appreciative of volunteers than the Thomas team!" The program was very cute and I enjoyed chatting with some of our Ronald friends (volunteers here).

Because earlier the girls didn't want to stop playing to eat, I fixed two little plates of fruit and cheese for the girls and went out the back way to take it to them. Being caught off guard I heard, "Angela?" Come to find out it was a powerful prayer warrior and incredible spoiler who then introduced me to her equally wonderful husband. (I learned they both work at their church; isn't that neat?!) I took them into the house so they could finally meet Christi. Jan and Larry will never know how much their love has touched us all. After they left my sister turned to me, moved her hands out as if parting the seas and said, "Now there's a lady who's going straight to heaven - no questions asked."

Christi continues to feel extremely well. She did freak out her Godmother last night. Tina saw Chrsiti limping up the stairs and she asked with great concern, "Christi, does your ankle hurt again?" Christi, who was in the midst of playing make believe with Shelby responded, "No, I'm pulling a tiger up the stairs and you'd have to walk like this to really do that." (So funny!)

A NOTE FOR JAN: After the girls were finished building your ice cream treats for the children and parents in the kitchen last night they played with your glow sticks. Upon returning to our room they put one in each corner for our night lights last night- what a hoot! And thank you for bringing Shelby a gift bag too. My sister and I were blown away by your incredible thoughtfulness. (And the pleasant look of shock on Shelby's face when she read her name on your bag was priceless!)

SHAYNE: Sorry I didn't call you. We were up too late enjoying Shelby and Tina's company!

Mighty Maris

We praise Him that Christi's counts have recovered enough to allow for the carboplatin / etoposide combo of chemo which will begin shortly- outpatient for three days. She's already had some high pitch hearing loss from all of the Cisplatin so I'll be praying hard during the carbo infusion that she doesn't suffer any more hearing loss.

Christi is THRILLED she'll be riding home on Friday afternoon with her Cousin Shelby and when she found out that she'd actaully be allowed to be in her very first spring music program with the rest of her class at school she did a little jig heading down the hallway.

My sister and Shelby are only about 4 hours away so that is very exciting and since I'm posting about great blessings, we all have a room at the Ronald House! YES!!!!

hgb. 9.5
white 2.4
platelets 83
ANC 1,500

LDH - pending

Planes, Trains & Automobiles

It was a full morning of travel, but we safely arrived in Phildelphia at 9:00 AM. Thanks to Uncle Jeff for driving us to the airport and thanks to a very kind gentleman on our connecting flight from Cleveland who saw I was struggling with Christi's jogging stroller and all of our luggage. He provided assistance in the airport and all the way down to the train platform. God's people are good!!

Thanks!

Just got in, but wanted to say THANK YOU to Tricia for taking great care of Christi tonight! Currently, we're at the King's B&B&AD (Bed and Breakfast and Airport Dropoff - hee hee!). We're leaving in less than 7 hours so I'd best get Christi a snack and head off to bed. Thanks for lifting us up in your prayers!! Our next post will be from CHOP.

PS: Christi's message to Tricia, "Thanks, thanks to Spooks!"

Happy Birthday, Shayne

Last night the girls gave Shayne his birthday presents two days early since Christi & I will be in Philadelphia on Wednesday. Christi got him a pair of Skyline (her favorite restaurant) boxer shorts which he modeled for us making us all giggle. Shayla gave him an Usborne Introduction to Art book which she hopes he'll read with her. (They have had a special art museum connection since our NYC days when they'd attend "Start with Art" together.) HAPPY BIRTHDAY, sweetheart!

If "Lisa" from Boise happens to read this, please know your sweet letter arrived safely. Thank you!

Here's wishing you all a great day. We're off to school now. My next update will be from the city of brotherly love- the city that gives us hope. Take care!!

Mom & Maris

The picture was taken last week, but I love it!! One of the reasons Christi wanted a Siamese cat was she read they are able to be trained to walk on a leash. Well, everytime she's attempted it Buckeye runs around and Christi chases after it holding the leash. (One of them is being trained at least, hee hee!) This morning I signed Christi up for 4H. She's wanted to take her cat to the fair for as long as I can remember. Last year we told her, "Next summer." Well, each time we drive to the hospital we drive past the fairgrounds and each time she says, "I still get to take my cat to the fair, right?" We don't know much about it yet, but we think she will make a poster and then answer questions from a judge. She won't have to leave her cat at the fair and she's not certain if she will enter Buttercup or Buckeye. She proudly signed the 4H application form, hugged me and said, "Thank you, Mom."


While the girls are happily playing with their Littlest Pet Shop animals and before I misplace my notes from my Friday morning with Dr. Maris, I’ll post them here.

Dr. Maris: Any pain, lumps or bumps?
Mom: No lumps or bumps, started complaining of ankle and leg pain Tuesday night. Could it be from the Neulasta instead of the disease?
Maris: We don’t know enough about Neulasta in pediatrics so it is possible. If she were on the GCSF shots instead we know when the white count rises rapidly leg pain exists. Did she have leg pain before?
Mom: Yes, but I do not recall when it happened – if it were in relation to when her counts were coming back or not. I do remember we were in Philly when she complained.

Maris: We hope that the TVD had a good effect in further reducing her disease. We know that it made her terribly ill. We’ve put a lot of reliance on the topotecan using it with every round and hopefully it remains an active agent and we can use it down the road if need be. There has been concern that the lower dosage of it didn’t keep her disease down as the LDH went up with it. It’s now time to mix things up a bit and give her something harsh she hasn’t had before, something completely different.
Mom: I was thinking you’d suggest the low dose topo/cytox combo and we’d like to do that in our own home so that I can work and she can go to school.
Maris: That may be most convenient for you, but it’s not in Christi’s best interest. It’s most likely not powerful enough. Her LDH is above normal. Get her here Wednesday morning. If her platelets are high enough, she’s start Carbo/Etoposide. It’s three days outpatient. If not, she’ll go inpatient for five days of cytox/VP-16.
Mom: Isn’t carboplatin the chemo known to cause hearing loss?
Maris: Yes.
Mom: What about BSO-Mel? Shayne and I would prefer that to Carbo.
Maris: We’re not excited about it. It’s just a different way to give the family of drugs.
Mom: Didn’t she have high dose cytox and VP 16 at Sloan Kettering and it didn’t work?
Maris: I don’t have her chart in front of me right now, but I’m hopeful that her platelets will have recovered enough by Wednesday to start the carbo. The carbo is very hard on platelets so she needs to have enough support to start the infusion.

Maris: I know you are concerned about the liver. We did the CT scan just to check for a fungal infection, not to check on disease status. The good thing is the scan was not any worse, maybe subtly better.
Mom: It seems to me that the liver responds differently than the rest of the body and while the rest of the body may respond, typically the liver does not.
Maris: What you say has a lot of merit. The disease can be resistant in the liver; however, there are cases when the liver does in fact respond, but it isn’t clear on a CT scan. You need to do a MIBG and trust that. Abnormalities on a CT don’t always go away. Unfortunately, some doctors don’t even know that and they’ll actually biopsy the liver and then learn the disease is dead. The liver doesn’t heal like other tissues, maybe its dying already. The CT wasn’t any worse. Christi needs to do something different for what will hopefully be her last harsh round of chemo and then once she recovers we’ll do a full evaluation of her disease status and see if we can hopefully get her on a clinical trial with minimal disease again. She’s had a lot of chemo and years of treatment; however, she’s never been through transplant so that is definitely in her corner.

Maris: Keep me posted on any leg pain or ankle pain and if it continues or worsens over the weekend, get her here immediately. I will come over and see you on Monday if you bring her in.

So basically that was it. Next I called Shayne crying with disappointment and then I went and booked our one way airline tickets. This morning I received a great scripture message from a dear friend. "I know the plans I have for you," declares the Lord. "Plans to prosper you and not harm you, plans to give you hope and a future" Jeremiah 29:11 I thought this was most fitting! Thanks, Lori!!

My sweet cousin Tricia will entertain Christi so that she doesn’t have to go to class with me Tuesday night. We’ll head for the airport at 4:00 AM with Uncle Jeff on Wednesday morning. At the same time my dear sister, Tina (Christi’s namesake) and her daughter (Cousin Shelby) will be leaving Cincinnati making the long (11 hours I estimate) drive to Philadelphia. (Thank God Shelby is on Spring Break this week! Christi will have a ball – well as much fun as you can have while getting chemo) with Shelby in town!! They’ll be with us throughout Christi’s treatments. If all goes well, they’ll drive us back home on Saturday or Sunday, which will save us hundreds of dollars in air travel, and get us both back to school next Monday morning.

Additionally, I’ve now come to terms with the fact that I’d rather have a deaf daughter than no daughter, so the chemo combo of etoposide/carboplatin is my first hope. Which ever cocktail of chemo is given to her, it’s going to make her terribly sick and land her for a long inpatient hospital stay again in about a week. Also, I know there is a chance she may not recover and this could be her final round of chemo; yet, I must trust the miracle worker, Dr. Maris who has gotten Christi so far despite all odds. I’m very grateful that we found the neuroblastoma listserv in the fall of 2002 and sweet families urged us to get her to Sloan Kettering where Dr. Kushner nine months later referred us to CHOP. Even though it embarasses Christi to pieces I always respond, "Only the best for Christi Thomas," when nurses at CHOP first learn we travel from Ohio to receive their incredible care. I thank the dear Lord for his guidance and wisdom and pray that it will continue. We have been richly blessed!

Easter Blessings

I continue to marvel and to be in complete awe at this amazing child currently feeling so well and thoroughly enjoying life. Countless times today I found myself thinking about our fellow cancer friends who are no longer able to watch their precious children run, play and hunt for Easter eggs. Life can be so unfair.

My Aunt Mary provided a fabulous meal and her traditional egg hunt. Next to catching up with my beautiful cousins on a beautiful day was taking Christi, Shelby and Shayla for a walk around New Washington and listening to their chatters. (Christi hasn't complained one time of any leg pain today - Praise Him!!)

I already have a pit in my stomach about leaving Shayla in a few days, but I shall try to put that out of my mind. The girls have asked to go to the library tomorrow for our last day of Spring Break so that is what we will do. (Sorry about THREE updates today. I just feel like we've received an Easter miracle and I'm currently filled with joy and gratitude.)

Easter Morning

It was nice to have my sister's family stay overnight with us. This morning was quite joyous as the little ones found their Easter baskets and then went on an egg hunt. Thank you to the "bunny helpers" who sent treats to our family in recent days. Everyone was quite pleased with their baskets. Shayne and I thank you!

Dr. Maris told me that if her ankle continues to bother her he'd like to see her in Philadelphia on Monday morning. I've attached this picture so that all can see it's not slowing her down.

This morning Shayla gave us a card she made at school. (Thank you to the awesome Mrs. Rombach for providing a great keepsake!)

Dear Mom and Dad,

Happy Easter! You are nice. I am really excited about our Easter and the special day. God be with you.

Love, Shayla

We're heading off to church now and then to my Aunt Mary's. HAPPY EASTER!

Easter Sunday

He has risen! Praise be to God! Alleluia! Many times during the past 12 weeks Shayne and I have reflected upon Shayne’s conversation with little Shayla when he told her that the cancer has spread rapidly and with great force and we were afraid Christi would soon die. During that conversation six year old Shayla told Shayne to remember Easter is coming and that Easter is about hope. Back in those horribly dark days, just three months ago, we really didn’t think Christi would be alive to see her sister’s 7th birthday (Feb. 12th) much less Easter so far away. While I’ve begged God to please give us one more Easter with Christi I was a “doubting Thomas” and didn’t think we’d really receive such a blessing. On this special day, I can’t believe how fortunate we are! Thank you partners in prayer for getting her so far! Here’s wishing you and yours a very blessed day! Rejoice!!

Holy Saturday

The girls were so excited last night, I don't know how they slept at all! FINALLY, Aunt Tina, Uncle Gil and their three darling children pulled into our drive this afternoon to begin our Easter celebrations! As you can see from the egg hunt, Christi is feeling very well. (Her right ankle is still bothering her, but she says that it is better. According to her action in the egg hunt today, I think it's fine!) As I type, Shelby and Christi are coloring eggs to put out for the Easter bunny to hide in the morning. Here's wishing you and yours a happy and blessed Easter!

“I just want to clean the bathroom!”

OK, it’s funny now, but an hour ago that is what I called and sobbed to Shayne. You see I was in the midst of cleaning when Dr. Maris called and told me we were going with his plan and not mine. I really thought he’d agree to our plan: five days of low dose topo/cytox after school in our own home so I could work and she could remain at home. He said, “For this last round of chemo, we should mix it up a bit and give her something she hasn’t had before. She needs to be here on Wednesday.” UGH!!!!!!!

So instead of cleaning, I hit the computer to try to find the cheapest way to Philly and I started pulling out suitcases. Christi will go to Ohio State with me and attend my class on Tuesday night (If it’s okay with my Professor. Hey – with Christi maybe she’ll teach my class!! Smile.) and then we’ll fly out of Columbus at 6:00 AM on Wednesday. (Shayne’s birthday. Christi already has his present.) After this round we’ll do a full evaluation and see if we can switch her over to a clinical trial. (That has been our prayer during this Holy Season.)

So when I called Shayne back to get his credit card number to book our flights, I wasn’t exactly stating that I just wanted to scrub the shower anymore, but………I’m off! Here’s wishing you a good day! (Christi has been told she's heading back to CHOP. She was hoping and praying with us that she'd be doing chemo after school this coming week, but........so much for the best of plans. She's okay with it. She stated, "I just want to go to school on a Friday!" (She misses her friends!)

Good Friday

Holy Thursday

Our deepest Thomas team thanks to Jennifer, Michelle and the wonderful staff and students at St. Joseph's Catholic High School in Fremont. We had a very blessed day surrounded by their love and goodness. (And Shayla clearly stated that she wants to go to high school there.) Go, Streaks!

Christi's been complaining of leg and ankle pain again today. Pat Brophy, our Nurse Practitioner, called me from CHOP to inform me that Dr. Maris isn't back yet but we are at the top of the list for him to call. So hopefully by tomorrow morning we'll know what and where we'll be attempting treatment on Monday. (I'll convey our thoughts to him and see what he thinks.) Shayne has been working crazy hours, but the girls and I shared another lovely day- art, computer games, books, singing, dancing and a nap (Well, that was for mom only. No one else was game.)! We're all anxious for my sister and her family to arrive on Saturday.

The lighting is not the best, but I thought it was so cute that Christi was cuddling with "all" of her Siamese cats. Can you find the real one- Buckeye and not the slippers she loves?

Easter Egg Hunt

Thanks to the Student Government at Tiffin Univeristy, Christi & Shayla had a fun time late this afternoon at their annual Easter egg hunt. Christi started going to their egg hunts when she was just three years old. Due to cancer, she's missed some over the years, but today she was out in full force - even deciding to participate in the 9-10 year old group instead of the 6-8 year old division because "I really am 8 and 11/12th's; that's nearly nine." It turned out to be a very good move as she found the "special egg" and won an awesome Easter Basket! (Thanks, Tiffin University! Gooooooo, Dragons!)

Christi continues to feel very well and for that we are grateful! Last night she danced for her one hour of jazz class followed by an hour and a half of ballet. Despite being very anxious and worried about being far behind in dance due to missing so many classes (She hadn't gone since Jan. 24th) when she returned home she said everything was great. (Whew!)

This morning when we walked into the school building she jokingly said to me, "I could tell Mrs. Smith that I didn't finish my homework because of ballet and all that jazz, but I'll have to tell her really I just wanted to play Oregon Trail on the computer instead. I think I can get it done before school starts."

While walking past the gym today her class was in there. I saw her at the back of the line- trying to run and keep up with her classmates but I noticed she was limping. She told me her ankle hurt and it was from ballet last night. (I pray that is true.) Other than that - no complaints!

After school we had her blood drawn from her arm at the hospital.
3.9 white
10.4 hgb.
26 platelets (very low)
2,200 ANC

LDH: (100-190 normal) 234 (Up a wee bit from last month and still elevated, but not like 922 when tumors were popping out of her skull each day that horrid week in late January.

We were blessed with a visit from the Bowerman's tonight. Also, Christi had a school friend call and they chatted for the longest time. (Thanks, Sarah!)

Tomorrow we shall hear from Dr. Maris and learn what the game plan will be. (We'll find out what she'll start when and where. Shayne and I have shared some thoughts, but we'll see if he'll agree and if we can work it all out.)

Tomorrow will also find us on our Spring Break and meeting up with the great folks at Fremont St. Joe's Catholic High School where Christi and Shayla will be having lunch with the incredible cheerleaders and students!! Thank you partners in prayer!

School? YES!

After a glorious weekend, which included the girls playing outside, it was finally time for what Christi was most excited about at home - SCHOOL!! As soon as I called her this morning, she hopped out of her bed. Rubbing her wrist she said, "My wrist hurts." Of course that felt like a punch in the stomach, but she'll never know that, instead I asked her what she wanted for breakfast. The entire way to school the girls laughed and sang Broadway show tunes much to my delight. It felt like old times! "I love math," was heard tonight while she sat at the kitchen table working on her homework. "I'm glad to be back at school," said Christi. (We're glad too!)

We've received the printed final report from her CT scan. Unfortunately, it does say that there has been no change in the liver lesions. Of course this makes Shayne and I very sad, but we know it could be much worse. Over the weekend I noticed that her long, beautiful eyelashes are starting to fall out and her eyebrows have really thinned.

As always, THANK YOU for your continued help and support- prayers, cards, treats, emails, etc. get us through each day. We are unworthy of your continued love. Rarely, do I send out thank you notes, so please accept this as our official thank you- "blog style". Your reward in Heaven will be great!

She's BACK!

The sweetie isn't just back, she's back with her boundless energy, amazing wit, incredulous compassion and amazing faith! After the hell she's endured in recent weeks, I just can't believe she looks and feels this well! Praise God! I'm grateful to now have placed my own eyes upon her, cuddled with her, assisted with an art project and witnessed her playing so happily with Shayla the entire day. I fully expected to spend the day spoiling her; however, she was busy playing with the new “Art House” (It’s amazing!) and “American Girl” things with Shayla. She hasn't eaten yet today, but perhaps that's either because Shayne said she ate a quarter pounder at midnight or because she's been too busy playing all today to stop and eat.

Shayne and I spent the entire afternoon on the couch talking, reading and napping. (I can't believe he let Christi shave his head bald, but Christi thinks he looks great and said she'd do mine too.) I think Aunt Vaunie’s right as she told Shayne we "sugar coat" things on the website- all that Christi endures is absolutely horrendous, intense and downright grueling. I added up Christi’s medical record since January 9th 2006: 28 days of harsh treatments, 33 nights spent in the hospital, 15 life saving transfusions, 3 nights spent in the emergency room, countless tests, pokes, and hospital appointments yet one unstoppable spirit! She’s missed seventy one days of fourth grade this year, but she is hoping to be back on Monday. I think that will happen!

Back in the Buckeye State

Or should this be titled, "Back with Buckeye"? Buckeye is curled up sleeping beside Christi, Shayne's still up and is off at work, Shayla's busy playing with some new toys Christi brought home hours ago and the laundry is in the machine; therefore, I'll post some pics Shayne downloaded last night.
(Calling Grandma)
(Spa Treatment by Aunt V!)
(Christi Cuts Aunt V's Hair)
(Thank You, Dave & Sharyn Kerschner!)
(In Pursuit of the Perfect Book)
(A Bookstore with a Cat, Wow!!)
(Cuddle Time with Aunt Vaunie)
(Service by the Best - Daddy!)
(Awesome Box Seats at the Philadelphia Flyers Game)
(Thomas team at Wicked)
(Shopping Sisters - Please Touch Museum)
(Instant Messaging and Webcamming with great school friends)
(Teasing Her Mother)

Nearing Ohio

As I type, Shayne is nearing the Ohio line! Praise God for safe travels thus far! Aunt V, being one to tough it out until the very end, arranged for her flight to leave out of Cleveland instead of Philadelphia, so they'll drop her off at the airport in about three hours and she'll fly back to Phoenix while they finish the journey home. I will forever be grateful for Vaunie's employer and friends for sending her out and allowing her to stay and help out in what turned out to be my long absense. We have met the greatest people on Earth throughout our journey! We don't walk this road alone; we are incredibly blessed by tremendous friends and strangers alike!

Shayla and I went grocery shopping after school so that Shayne and Christi would have some good foods waiting for them and so that Shayla could pick up the things she's been wanting to get in order to make the sandwich in "The Sandwich that Max Made". She was as proud as a peacock fixing me dinner tonight- a ham, cheese, green pepper and bean sprout sandwich- just like Max made! Delicious! It was in town where I received the text message from Shayne regarding the scan.....

Liver lesions remain unchanged, negative for fungal infection, platelets transfused, hung her blood at 3:30.

About 8:00 PM, their long day was complete and they left Philadelphia to make the ten hour trip home. I look for them to arrive about 6:00 AM. Shayne said he has to get ready for a 11:00 meeting at work; that man is simply amazing! I plan on spoiling him and Christi (and what the heck - Shayla too! We've had incredible bonding time in the past two weeks) the rest of the day.

Christi's scan report was preliminary. At first I was disappointed that improvement wasn't noted after a terribly harsh round of chemo (TVD agents) but now that I ponder it some more, I fully realize it could have been worse and maybe the final report will show improvement after all. Regardless, our family will soon be back together again and we're all very happy about that! Goodnight from the Thomas team!

The Belly Button of the Butter

Aunt V has been joking with Christi and I all week about how spoiled I was as a child. Her evidence is the fact that mom always gave me the center of the butter tub affectionately known as the belly button. (By the way HAPPY BIRTHDAY MA) Aunt V and I have been jockeying for the "belly button" all week which is now the snuggle spot with Christi! SIBLINGS......

Today is a good one thus far. She needs two transfusions. Her platelets were 10.... and her hemoglobin was 7.4. It is bizarre that a good day can consist of a day when my daughter needs two life saving transfusions! Everything is relative though ehhh? Today her ANC popped over 200 so we are free to go!! More good news-I think.... is that her LDH is VERY low, like well below normal levels. No one is sure what to make of that, but, it is clearly better than it being above normal. (This is the marker that indicates the disease activity)

The one thing that is still pending is the CT scan of her abdomen. They are checking for that mysterious potential fungal infection as well as checking on that damn liver disease. I am anxious to get the results of the scan that happened today at 11AM.

With things going well last night we were able to relax and enjoy the evening. I packed up the van and got gas. Finally, I found a Taco Bell for Christi. We spent yesterday putting a 250 piece puzzle together-map of the World. So last night I had to find puzzle glue to preserve the puzzle. Christi wanted to call Grandma Dixie as she put the last pieces in, because, grandma is famous for assembling complicated puzzles. After all my chores were done and the puzzle was secured, I strolled down to the local tavern to listen to a guy play the acoustic guitar. Finally a little relaxation.

I will gladly return the blog to Angela full time tonight. I am planning on leaving Philadelphia as soon as her transfusions are complete! Christi and I will both be very sad to see Aunt V leave. This has been a special time, even under these dire circumstances. Thank you to Vaunie's friends, co-workers, and employer for making this happen. I would not have made it these two weeks without her.
Shayne

Little S.E. Tiger

She's not a "little" tiger anymore and the "big" S.E. Tiger just wants to come home and get back to school! God willing, I think that should happen next week.

It was another rough day at times in Philadelphia on Thursday; however, Shayne said if she remains fever free through tonight he intends to drive her home.

Today, they will repeat the CT scan of her liver to see if any progress has been made and to chart further plans. I'm anxious to learn of the results of the scan while at the same time maybe I don't really want to know. As always, your prayers are welcome! I'm scared. Thank you!!
(Photo: Baby Christi, 1998)

This was a stressful day

Aunt V got her first full 10 rounds of cancer stress yesterday. It never seems to be the big right hook that gets to you, rather it is the constant jabs that wear you down. So when someone willingly chooses to come live this life with us and take these punches with us...there is little doubt that their motive is genuine-out of love.

Christi started her day with aggravated with the world. She was miserable and chose to make all of her care givers share the pain. This is not her typical mode,however, even the Pope has a bad day right?

I was wanting to get her off some of her antibiotics when she spike the fever the night before. Because of that fever I was left with having to keep the antibiotics on as well as adding the antifungal.


To say I was ambivalent about added more medication is an understatement. The flow chart is: kid admits with fever-start broad spectrum antibiotics. If nothing grows in the blood cultures then reduce the antibiotics. If another fever occurs then resume broad spectrum antibiotics, draw new cultures, add antifungal. So that is where we were-my ambivalence was not enough to resist the new medication. It bothered me a even more that we had to premedicate to give the antifugal-Amphotericin B. She got Benedryll and Tylenol. While these are benign drugs it is just two more to a growing list. How much can a little body handle??? 30 minutes into the infusion Christi started shaking uncontrollably with rigors. We have never witnessed this sort of reaction. The infusion was eventually stopped and she was given demerol to regain control.

The solution offered is that we start a different antifugal which has fewer side effects. This was when my push back started on medications. I asked if we could give her a 12 hour reprieve from these heavy medications. Negotiations ensued and I lost based on better constructed arguments by the medical team.

Now as of 5 AM she spiked another fever (39.7c)which should again release a cascade of events leading to more medications throughout the day.

An interesting information morsel and another good reason why CHOP is one of the best is their handling of blood cultures. IF a kid gets a fever, they draw blood and put it in a glorified Petri dish to see what grows. They monitor and if something grows they give the child specific antibiotics. This is standard protocol anywhere, what is really cool here is that it is semi-automated. The dish is in a machine that looks at the culture every five minutes trying to detect change. If there is change an alarm sounds and a technician is notified.

After Christi finally recovered from her antifungal episode she started coming around a bit. Her and Aunt V had just assembled 3 100 piece puzzles when she managed to accidentally yank her needle out of her chest. She started leaking fluids and bleeding. Her concern of course was her pain and the fright of leakiness-my concern was losing the port. Fortunately, after a harrowing 30 minutes offset only by good nursing, we got her re-accessed and settled down.

When I went to sleep at 1:30 she was eating popcorn and watching a movie with Aunti V. So when the nurse woke me at 4:30 about the fever I was quite shocked. New cultures have been sent and counts are being checked. I will post more when this information is back in our hands.

Shayne

I'm just waiting until 9:00 PM when my cell phone is free and I can dial Philadelphia. With all that has happened in recent days (beginning with her admit while at the very same time learning the shocking news that our inspiration- the "John Wayne of Neuroblastoma" Nick Snow died) I'm really struggling here so far away from Christi.

(Picture on left "Sweet Little Cam") Tonight, I'm also praying for comfort for two fellow Neuroblastoma parents as they said goodbye to their son's body today. Like Christi, Cam was also diagnosed in 2002 and also treated at MSKCC and at CHOP. Sound familiar?? This disease is too evil! http://www.caringbridge.org/fl/camspage/index.htm

Shayne always provides me with comfort even when he's bombarded with tremendous stress himself. I thank the good Lord as it's now finally 9:00 and time to call that wonderful man! Good night!

Allergic Reaction / Lesson Learned

Oh, I see Shayne has just posted an update. Well, since I already typed this, here goes:

So much for my flight to Philly. When I went to check in I learned that the airlines cancelled my return reservation. Since I learned such a valuable lesson, I feel indebted to share my experience so that there may be learning from my mistake.

When I flew home on the 27th, I had a 5 ½ hour lay over in Detroit before the 1 ½ hour flight to Columbus. Because both airports involve two hour drives, it seemed foolish to hang out for seven hours so I asked my friend to pick me up in Detroit. Well, much to my surprise, that cancelled the rest of my reservation. They wouldn't reinstate it, but told me I could purchase another ticket. Needless to say, I'm still in Ohio. Shayla was pleasantly surprised to see me return home last night.

I wish I could say that Christi was feeling better, but that's not the case. She's miserable. Her counts today were very similar to yesterday's counts and she spiked a fever again last night. The doctor believes that she may have a fungal infection brewing. Your prayers are welcomed. Furthermore, I can feel the tremendous frustration brewing in my dear husband. I know exactly the helplessness he feels in addition to experiencing what a caged animal must feel. I'm grateful Shayne's sister is with them at least.

When I spoke with Shayne moments ago, I learned she had just had a reaction to one of the anti-fungal meds they put through her IV. YIKEs! Her pulse ox went down to 65 and her heartrate up to 165. She shook hard and cried with pain, terrifying to Shayne. That was soooooooo scary! I understand they've just given her Demerol and now she's sleeping. Shayne said he will call me in about 15 minutes to update me. I cannot believe I am 500 miles away.

Not feeling well

Christi spiked a fever last night around 12:30 so that set off a chain of events that led to more exams, more antibiotics, and now anti fungal agents. The concern is that if she had fever and then lost it then it came back that it could be fungal. Her counts have not deteriorated: her white count is .4 and her ANC is zero ( guess it can't go negative) her Hemaglobin was 8.9 which was a nice surprise because of no transfusion and her platlets remain marginally above transfusion level as well.

She does not want Aunt V to leave her sight so V stayed at the hospital with us last night. Aunt V and I slept head to toe on the couch and chair in the hospital room. The nurses kind of laughed and ordered us a cot for tonight.

Overall Christi is cranky and lethargic. Really she is just not feeling well at all. Her only food today has been a Reeses Peanut Butter Egg-thanks Amy.

The van is loaded and pointed west. We are just waiting on some good news to spring us from this joint!

Shayne

Midnight Run

So I have continued to try to find interesting yet acceptable things for Christi to eat at night. She is hungry, however, the mouth sores prevent her from eating and her taste buds just won't allow her to enjoy much of anything. She is burnt out on her standards of McD's and Macaroni and Cheese.

In the ER she decided she was hungry for Taco Bell. So at midnight I headed out looking for a taco bell. Guess what? the only one in University City is at the 30th street train station....so I went. That is a scary place at midnight!!! Too bad though because the Taco Bell was closed.

Last night she toned her order down to make it more managable for me. "Dad can you bring me some of that steaky stuff that we had a the hockey game?". Well you must remember that we had tickets to the hockey game compliments of Brandywine Real Estate or some such outfit who had donated them to the RMH. We were in the luxury box and the the steaky stuff she was eating was FILLET MIGNON. She got a quarter pounder!

Tonight she had a simple straight forward request. Could she have something that was like a hamburger and like a pizza??? What???? I said "How about Chinese"?? There is this Asian Fusion restaurant that Christi has been wanting to try called the "Bubble Tea House" on Sansom Street. I zipped over got her a large sour lemon bubble tea and sweet ginger chicken and rice. No way was she going to try that...should have known. I'll try cereal later! Oh for you who are wondering what bubble tea is....it is one of a bazillion different teas mixed together with giant tapioca balls on the bottom. You get huge pipleike straws to suck up the balls that have no flavor but are fun to chew. I got Mango, aunt V got green tea, and Christi got sour lemon. The two Co-eds ahead of me ordered sexuality and aphrodisia, I didn't stick around to see how that worked out.

Well I better go cook up some Fruit Loops!

Shayne

Inpatient

After spending eight (yes, 8) long hours in the lovely emergency room at CHOP last night, Christi went inpatient at 5:00 AM this morning. Unfortunately, with no rooms to be had on the oncology floor, she’s on 5 South. (Shayne said he put in a request for an upgrade, but no one is holding their breath. We know how this works.) Sadly, among other things, it means no computer access (so much for the webcam). Christi received a platelet transfusion today. She’s feeling lousy: nausea, feverish, mouth sores, not eating, aches and pains, etc. I’m thankful Aunt Vaunie is there. What a blessing! I will soon be on my way as Shayne heads for home!

Fallen Hero - Nick Snow, Forever 16

In the world of neuroblastoma, long term relapsed/refractory fighters don't typically ever achieve remission for any length of time. I remember exactly where I was the day back in December of 2002, when I learned that after 84 months (7 years) of continuous treatments, Nick Snow beat neuroblastoma and actually stayed NED! And never will I forget exactly where I was the day, when I thought he was doing well, I learned he departed this life. A body can only take so much. Rest in peace, Nick, a pleasure to have met and forever a hero of the Thomas team for blazing a trail, giving us hope and teaching true lessons about life long the way. We are heartbroken. http://www.caringbridge.org/ca/nicksnow/

Fever Hit

Well, we knew she hadn't been feeling very well most of the weekend; yet, we were hopeful she'd somehow avoid the dreaded fever, have an increased white count at her appointment tomorrow and Shayne had planned to drive her home which would allow me to cancel my flight to Philly and to receive a full paycheck for the week. Well, wishful thinking! I feel like I've been punched in the gut...........again. We just didn't need this.

A moment ago, I called Shayne for our nightly chat. I could tell he was hustling around as he immediately said, "We're heading over to the emergency room right now." Having experienced the middle of the night fevers and admits in the recent past, my heart just fell. I warned him that he'd sit in the ER with her for seven hours before (hopefully) getting a room up on the oncology floor and that the ER at CHOP is anything but pleasant for an oncology patient. He know's what he's up against. (They make certain she's stable and that she has that first dose of heavy meds in her first - then call to see if there's a room upstairs. Despite her request for a pillow, they won't have any.) I'm so glad Aunt Vaunie is with them. And I'll be there soon; hey, my heart and head are already there!! God bless you, precious Christi! Mommy loves you so and Shayla can't wait for you to come back home to play with her; she told me that many times today.

Mitzvos

There are many different groups that provide food and "manpower" to the Ronald McDonald House. Today, breakfast was provided by a local Synagogue. In a conversation with a very nice retired gentleman from the group, I asked what would the proper Jewish term be for their act of kindness. (Since saying that it was Christian act of kindness seems insensitive.) He told me that "love thy neighbor" was a Mitzvos-a commandment and that was what they were doing today.

While Christi slept soundly this morning (She had a restless night.)I took the opportunity to visit with another family that is staying here. They are from Uraguay. They related that they traveled here to seek the great care of CHOP for their son's Medullablastoma. It reminds me again that although we travel 500 hundred miles for Christi's care, we are very, very fortunate to have access to the greatest healthcare in the world. Uraguay is a small country with an agricultural base and one large capital city with the balance of the population in small towns. We compared notes on how generous people have been in supporting us in our quest to save our children's lives. He said there is a saying in Uraguay "Puebla Chica Fierno Grande". Roughly-small town, big hell-meaning that when help is needed everyone in a small town pitches in...thankfully we are from a puebla chica. Thank you everyone for your continued support.

Shayla & Angela went to check out the new Walmart after church today. They ran into some friends. Here's an extra thank you to Tom Leis for the assistance he provided to my wife today!

The highlight of our past two days in Philly was the visit from Dave and Sharyn Kerschner. Not only did they provide excellant eats, but they were very thoughtful in choosing items to keep us entertained. Christi and Aunt V started the "Anne of Green Gables" book while I promptly lost in the Jenga tournament.

With no immunity now, there is not a whole lot that we want to do out in the public; however, being locked in the RMH seems like a form of incarceration. Hopefully, Christi wakes with some spunk to keep me entertained today. Yesterday she had little ambition to leave the room at all. It is a challenge to manage my spring fever and her desire for quiet solitute. Each day I try to exercise so as to burn off my pent up physical energy. I have been fortunate to take some long runs down the Schulykil Banks Trail into Fairmont Park. These long jaunts seem to mellow me out sufficiently to attend to Christi's whim's.

Her sense of humor remains in place despite her low ambition. Last night as she emerged from the bathroom after shaving Aunt V's head bald declaring, "hair's for squares". She continues to get digs in on me whenever the opportunity arrises. After grilling her with questions about how she was feeling and not getting any response I just stood there and sighed.....a few moments later she finally looked up and said, "Were you talking to me??" Each night around midnight she comes up with a challenge for me usually involving some sort of food she is craving. So far I have been able to deliver, we'll see what she comes up with tonight.

Baby Christi

I love this baby picture of Christi taken in 1998 when she was about 9 months old wearing a lovely outfit Shayne's Aunt Ilo sent her from Alabama. As a baby, Christi would give us that beautiful "oh my!" expression so often. What a doll! I miss those carefree, worry free days thinking she was healthy.

Thanks to free weekend cell minutes, I've had many calls with Shayne over in Philadelphia today. So far, no fever and we praise Him for that blessing! Christi is feeling well, except for the mouth sores and some back pain. I wish it were a sick April Folls joke, but it's not. Christi was limping because her ankle hurt at one point, but that's gone now. And a few times Shayne's witnessed her bending her head back again like she had been doing days ago. Although those aren't good signs and I hate to hear of any pain, I'm going to pray and try to convince myself that it's nothing. Divine intervention is a lovely thing; thank you for yours and have a good night!

Former Photos from Philly

We're not able to post any current photos of Christi until I return with my camera phone in a few days; however, since I'm once again having big "missing and worrying about Christi moments" I'll post pics that my awesome Aunt Marty emailed me today.

Shayla is having a friend over tonight so she is busy cleaning her room. (Shayne if you happen to read this you know that's code for what I'm doing next! Gotta love her!)

(Rolling out the gingerbread dough for the "Easterbread House" which is still on display at the Ronald House)
(A quiet moment with Great Aunt Marty)
(Christi wanted to make lemonade for the Ronald families so she made it and then served it.)