COSI Connections

Christi (with the help of some Zofran) quickly took control over this morning’s nausea and after that was conquered she has continued to feel very well all day. As you can see, Jenn and Traci’s COSI friend (Reptile Ryan) arranged for us to visit Lyndsee and her tree frog exhibit at the Academy of Natural Sciences this afternoon in chilly Philadelphia. We even were treated to a “behind the scenes” tour and Christi enjoyed herself throughout the entire museum – a fabulous place. We all came back to this wonderful Ronald House exhausted – well, all except Christi.

“Harriet” and “Elizabeth” continue to provide much entertainment and distraction and their presence has allowed me not only to update this blog, complete the laundry and get groceries without subjecting Christi to frigid temperatures, but I also started and finished a book highly recommended to me by one of our dear Angel friends, Mary (Simon’s Mon). It was called “Shelter from the Storm: Caring for a Critical Ill Child”. I thought it best to read this book while she was doing relatively well versus a time when panic and emotions run high. It was great for a preparation which I hope to never need.

After tomorrow’s round of “The Cyclone” (if Christi continues to feel well) we shall use our COSI membership to obtain free admission to the “Franklin Institute” (Philadelphia’s science center). I can’t even explain how nice it is to have sweet Jenn chauffer us around this lovely city.

Tomorrow we shall see Dr. Maris. While I’m grateful that her cancer responded to this latest cocktail, I know that’s typical of Christi’s disease and I also know that it is not durable. My questions for John will center around “what’s next?”.

Christi’s Crusaders

Was it the Zofran used to conquer today’s nausea, or the fact that Christi is delighted to have two true sweethearts here entertaining her while she’s getting her chemo? I don’t know, but today’s treatment was a breeze!

And when Pat, the amazing Nurse Practitioner, came to tell me that her LDH level was not only in the normal range, but “her record low ever” I could only start praying. She asked, “Aren’t you even going to smile?” I was doing far more than smiling, I was praising Him for giving Dr. Maris the wisdom to make such a fine choice to fight Christi’s disease!!

Her other blood counts were:
3.5 white (low)
9.5 hgb. (low)
79 platelets (low)
870 ANC

LDH: 576 (normal 420-740) Her LDH 3 ½ weeks ago was nearly 3,600!!

*My numbers are estimates here as I’m away from my print outs right now, sorry, but I think I’m very close on all of these.

We returned back to the Ronald House about 4:00 today. What’s next? Tomorrow will be day of the “topless cyclone” (Hee hee. Inventor Steve and our NB friends know this relapsed cocktail!) and also a dash of vincristine will be added in. We’ll be at the hospital by 8:30 AM and hope to be spending the afternoon at the Natural History Museum – thanks to some great connections our COSI friends (Traci & Jenn) have arranged.

Ronald McHome

They made it safe and sound to the Philly RMH. Christi played piano for quite a while tonight. She is now happily playing a game with her friends Traci and Jenn. Tomorrow to CHOP; tonight was home sweet Mc Home.

Long Day Ahead

"A FINAL CUDDLE WITH DADDY"

In a matter of hours we shall depart for the airport. (This will be our fifth flight to Philadelphia in nine weeks – but hey, who’s counting?! Hee hee) We will change planes in Chicago and arrive in Philly late this afternoon. Thankfully, Christi continues to feel well, but I will still be pushing her in her big blue jogging stroller.

Shayla and Christi’s “big” friends (and Shayne and my “little sisters” hee hee) are driving in from Columbus tonight. Not only will Christi have the best “big” playmates around (her loving fans from Columbus COSI) but I’ll also have their help (and their car). We are incredibly grateful for their love and assistance all this week! I’ll call as soon as the Ronald House opens and hopefully the four of us will have a room there this week.

Preparing for Departure

We are happy and most grateful that Christi continues to feel well!! She was invited to do some ceramics with one of her best friends, Kaylyn, this afternoon bringing her a lot of joy.

Today was one of errand running for me as we are Philadelphia bound - flying out early tomorrow morning. I was able to catch sweet Tiffany (a Heidelberg College student and daughter of my dear friend Lori) as she had 13 inches of her gorgeous hair cut at the “Head Shed”. It will soon be mailed off for “Locks of Love”. What a sweetie!

Dr. Maris has “firmed up” some plans for us. He feels Christi needs to remain in Philadelphia so that she can be close to the hospital and to his care when the need arises (weeks of chemo, nutripenic hospitalizations, blood transfusions, etc.). He believes that we were “very lucky” last time, when her ANC was zero (no immune system) that she didn’t get an infection and that I got her to CHOP just when her fever started. It would be very dangerous not to be so lucky in the future; therefore, Shayne and I have agreed to his advice and we will be spending a longer time than we had hoped in the city of brotherly love. (Of course I didn’t know this when I purchased our tickets so we will be flying home late Friday night.) But now we will only be home about 4 days because we have purchased one way tickets back to Philly on March 8th. (Yes, that “one-way” scares me a bit, yet I know we will get home – sometime.)

When I told Christi of the change in plans (that we’d be gone one week, home for 4 days, then gone for a long time) she just asked if she’d be home for her 9th birthday (May 12th). I told her that I didn’t know, but that I hoped so and if not we could probably get some of her friends to come to Philadelphia to visit her at Ronald or in the hospital. Dr. Maris’s plan is to do 2-4 more cycles of chemo and then to switch to something less toxic. I do believe the “less toxic” options are current clinical trials and most of those are oral and could be done at home. We’ll just have to see how her disease behaves (while trying not to miss Shayne and Shayla………..and Buttercup and Buckeye) too much.

Our address at the Ronald House will be:
The Thomas team - Christi & Angela
Philadelphia Ronald McDonald House
3921 Chestnut Street
Philadelphia, PA 19104
Phone: 215-387-8406

Thank you, dear prayer warriors!

PS: Buttercup is now “tolerant” of little Buckeye, but that’s it. Maybe by the time we get home they’ll be friends. Christi made a food dish for Buckeye today – just like she made one for Buttercup when we lived in the Ronald House in NYC. (Thanks, Goshes!)

A Fabulous Day!

"It's been so long since we just sat and laughed," said one of Christi's best friends to her at school today. The incredible Mrs. Smith had her fourth graders wear hats to school so that Christi wouldn't feel awkward about her bald head; it was precious and thoughtful!! Her teacher said that the kids were "all smiles" to finally see Christi with them at school after so long. I can't even explain my relief and joy! I checked on her a couple of times. Each time I walked past her classroom she looked happy and content! I'm filled with thanks and gratitude that we were all three at school today!

Platelets & Wigs

The girls are busy playing with their American Girl items so I'll put up a quick update:

When I went to wake Christi up this morning, I was caught off guard by all the dried blood I saw on her pajama top. It never dawned on me not to leave her port accessed with low platelets overnight. Ugh. Upon taking off her top to get her into fresh clothing to get to the hospital, I looked at her saturated covering and smeared blood. I was thinking that she could have bled to death while she was scared inquiring, “Do I have to get another needle in my chest today?” I don’t believe in 3 ½ years that I’ve ever been squeamish regarding Christi’s situation (others, yes, but not her) but this morning I too was uneasy looking at what had happened on her chest. Yuck!

The platelet transfusion went off without a hitch and the wonderful nurse cleaned her all up and I was greatly relieved that all was fine – just low platelets with a needled left in overnight. I asked Christi if she wanted to go to the beauty school and get our nails done before picking Shayla up at school, or to do a little shopping and she said she just wanted to go home and take a shower.

At home, we did a “little” art project. (OK, OK, where is her wonderful art teacher when we need her?! Hee hee! Just joking, Sue!!) The “Locks of Love” molding kit arrived so we watched the video on how to do it last night. Today we prepared her mold to send back for her wig. It was a HUGE mess and took a VERY LONG time. When I got out the Crisco to grease Christi’s little bald head (after shaving the fuzzies off so that the plaster didn’t stick to her scalp) Christi said, “What? You’re going to put vegetable oil on my head?” I told her we didn’t have any Vaseline and I called Grandma Nonee and that’s what she suggested. Then the little stinker burst out laughing and said, “I know. I watched the video with you, remember or now do you think I’m a vegetable?” So to keep her head straight and still and to keep her from talking I plopped her in front of the computer while I got to work. Later while Christi was in the bathtub getting the blue marker, Crisco, and plaster off of her head she sweetly said, “Ya know mom when we did that mold of my head today? It really was kind of fun, except when it really hurt when you had to peel if off, but if I forget about that part, it was fun.” (What a sweetie!)

Southwest Airlines had the cheapest flights this time ($342.0 per ticket) so our flights are booked. We leave Sunday morning and shall return on Saturday (for about a week).

Her tummy is still tender, but I do think better! Thank you for working overtime, dear prayer warriors!

"Changes in Plans"

If you wondered why I didn’t put a daily update on this blog yesterday, your guess was probably correct – things turned crazy quickly…….

According to the TVD European protocol, Christi should have started Round #2 of it yesterday. Obviously, she’s not strong enough now to do that. Because of horrible “belly pains” we decided it best not to take Christi to school yesterday and that turned out to be the right decision. I took Shayla and then went to catch up with my wonderful sub (Mr. Jones) for a bit before I returned home so Shayne could get to work.

Christi had a nice morning yesterday. Other than her tummy feeling terrible, she did okay and ate well too. She read, played with Buckeye, played the piano and on the computer. We baked cookies. Suddenly, after lunch, I heard her screaming in pain in the bathroom. In an effort to relax her to help the situation I sat on the floor and read to her – without success. While she was blowing her nose I saw that it was bleeding so I knew I had to call the hospital as she most likely needed a transfusion. I grabbed some books and called school to see if Shayla come go home with her friend, Amber and took off for the hospital.

Well her blood counts produced some GLORIOUS NEWS!! (Yes, she did need a transfusion; however, the LDH and ANC levels were FABULOUS!!) We spent over 3 ½ hours at the hospital (and didn’t even get a transfusion – we have to go back today) however, when the sweet nurse brought me the LDH level I told her I could just sit there for an entire week and be content with that news, no need to apologize about any delays!

LDH normal range at Mercy (100-190) *If you remember at the end of January it was 908 – our tip off to the fright train that was brewing inside of Christi which soon produced “lumps” out of her skull and jaw. The LDH came back at 522 ten days ago and yesterday it was 212!! I text messaged Shayne “Praise God! Nearly normal LDH, 212!” He called and jokingly said, “Well, doesn’t Dr. Maris get the award for pulling the rabbit out of his magic hat for this one??!!” Thank you, powerful prayer warriors! (And while I hate to ask, I am – she needs MORE! It’s far from a fix of any sort.)

Other counts were great too: 4.6 white (Yahoo! When I called Nurse Pat in Philly to figure out the transfusion information she said, “Tell Christi that when she gets on making white cells, she really does it well………and the G shots did the trick too!”)
ANC (Needed to be over 1,000 to stop the shots and to start the chemo again) It was 2,800! THANK YOU LORD! When Christi was told, “no more shots” her grin was the biggest I’ve seen it in weeks!!

Her platelets are down to 26. Because a sweet volunteer needs to drive all the way to Toledo to get them (and back, hee hee) today she will receive this transfusion. If she would have been in the single digits I would have pushed to have them done last night; however, this isn’t an emergency situation. As long as she receives them today she’ll be fine. THANK YOU to the American Red Cross and to blood donors everywhere for once again saving our sweetie’s life!

Finally, thank you to “Grandma” Donna and Shayla’s friends’ parents for taking care of her after school and getting her to religion and all during our hectic time yesterday!

Last night she was again in horrible pain from the “bowel situation”. I’ll be checking with some nurses today to see what kind of comfort can be provided if anything. She has been too miserable for too long. She had a restless night.

Last night just before I went to bed with Christi (and fell asleep reading to her) we received word from Dr. Maris that because her ANC is up she can start chemo on Monday; however, because her platelets are lagging the chemos he wanted to try (cabro and etoposide) will have to wait because it’s so hard on platelets. Therefore he’s going to do a five day round of Topo (but at a 50% reduced dosage because of how hard it hit her. Really scares me because I don’t know if it’ll be as effective at just ½ of the dosage she received last time.) He’ll also put cyclo/vcr with it (which she’s seen before). So I’m not real excited about the choice of chemos, but if it holds her steady while allowing her body to recharge itself for another big hit, I guess that’s the game plan!

So, I’m now frantically searching for airfare. Fares are about $500 per ticket again. I’m being really creative so we’ll see what I can book before the day is out. (last time I saved over $600 by booking our flight was a one way to Chicago with a change of planes in Cleveland (where we met Shayne and happily went home instead! I can’t check luggage that way, but I’m searching high and low putting my creativity to the test!) She will have a transfusion today and I’m hopeful (although probably too optimistic) that we’ll be in school tomorrow. If her belly situation resolves itself I think it’ll happen!

CHRISTI’S FUNNY: Yesterday while Christi was reading on the couch little Buckeye was under her blanket. I heard Christi say in a most loving voice peeking under the blanket. “Oh, Buckeye, honey. I’m so sorry. That was really bad wasn’t it? You poor little thing, come up here.” I asked her what was going on. She giggled and said, “I just tooted and Buckeye took the hit down there.”

Recovering at Home

Desperately wanting to return to school myself, taking Shayla into her classroom and then having to turn around and drive right back home to stay with Christi today was very hard. I’m hopeful we’ll all three be going back there tomorrow. Today Christi reported that all of her mouth sores are healed, except for one. Cuddling the entire night with little Buckeye (See last night's picture above), she finally woke up at 10 AM and started eating non-stop until 2:30 PM when I finally heard, “I actually think my belly is full now.” Today, the first in a long time, was a day completely free of narcotics for pain. Thanks prayer warriors! Her only problem is that it hurts to go to the bathroom. Daddy bought a prescription after work and hopefully that will help.

She spent the day doing art, reading, playing on the computer and cuddling with Buckeye. At one point she melted my heart by saying, “I like spending the whole day with just you.” While I still find it quite difficult to look at her little bald head, trimmed with peach fuzz, it will make watching for “lumpity bumpities” much easier. By the grace of God, I can report that her head is currently smooth and “lumpity bumpity” free! I’m anxious to get going on the next round of chemo (next week) so that she hopefully stays bump free (and headache free)for a while. The biggest misery, causing many tears, will be when “Nurse Daddy” gives tonight’s shot.

Our Week at CHOP in Pictures

Purrrrrfect Medicine!

We're home! (Exhausted, but home!) Praise God!!

Christi hugged her American Girl dolly and slept soundly in Mr. Grant's van, her stroller, on the plane and on the two hour drive home from the airport. I guess she was resting up for the "purrfect medicine" her Great Aunt Marty soon delivered - Buckeye!

Buckeye was a little scared at first, but soon settled down and curled up with Christi (after the two played with a little ball toy for a while). I can't thank Marty enough for her hard work in obtaining this special cat. Christi placed her new cat sleeping bed right beside her bed.

Buttercup, well........let's just say if Shayne brought home another wife and said, "Isn't she so cute? We will treat her as an equal member of the family and we will all love her too," I wouldn't be real excited either. Hopefully, Buttercup will come around soon and the two will become pals.

Not to gross anyone out, but (good news) Christi finally (after 12 days of waiting) did it! (You know, "dropped the kids off at the pool" as my husband would say.) Whew! That has to help her little tummy feel better.

Shayne's off at the grocery store now selecting items to put some weight back on this sweetie and getting her new prescriptions. We pray that her mouth sores heal soon so that she can eat. AND - it's FABULOUS to be back with Shayla! I think she grew an inch in my absense!

I don't believe Christi is going to be up to going to school for a full day tomorrow, but we'll see how it goes and hopefully we can go for a little bit at least.

I'm not certain if you can tell from the one photo where Aunt Marty is standing up, but Aunt Marty even brought real candy buckeyes for Christi! Incredibly thoughtful! Christi actually asked for them last night at the hospital and then said, "Oh, I guess this is Pennsylvania, not Ohio."

Happy

We're happy to be heading home, especially with Chrsiti now feeling much
better! Currently, she's in the shower as she wanted to try to wash
those nasty (itchy) hairs down the drain. They've really been bugging
her. She only has a little bit of peach fuzz left now. She also noticed
that her eyebrows and eyelashes are also falling out. She seems okay
with everything now, but I wonder when she walks outside of the safety of
these hospital walls how it's going to be for her out in the "real
world".

Her platelet transfusion was at 3:00 AM and once again CHOP's magical
Angels worked diligently to get us out of here!! Her blood counts were:
1.6 white (better), 9.0 hgb. (dropped) platelets 64 (up from 45 after her
transfusion) with an ANC of 320 (not much better).

Dr. Maris hasn't been in to see her yet; however, he emailed to just go
to the airport if he doesn't make it. The wonderful Mr. Grant will be
picking us up at 8:15 to get us to PHL. Shayne should be waiting in
Cleveland for us. Aunt Marty is scheduled to be at our home with Buckeye
at 2:30 this afternoon. What joy! There's no place like home.

We shall continue to pray that her white count and her ANC rise so that
she's not delayed from getting the next round of high dose chemo. (It
was scheduled for this Wednesday; however, due to her ANC not possibly
recovering to 1,000 by then we shall have to wait another week.) With
each day's delay we know it's giving the cancer time to "regroup" and
start taking over again. It is vicious! Hopefully, both of us will be
able to return to school this week, although I'm skeptical that she'll
really be able to make it an entire day. Regardless, I feel blessed to
be heading home shortly. Praise be to God! Thank you sweet partners in
prayer!

Almost Home!

She's lost 4 1/2 pounds since February 1st, but Grandma Nonee thinks she's gained that since she arrived here so it's not really lost just redistributed! (smile) I think once her horrible mouth sores heal, she'll be eating like a champ again.

She's also lost a great deal of her hair and was surprised to see the dark hairs literally covering her pillowcase this morning. It's really thin now and the "shedding" is bothering her and making her itch, but now I guess she knows what a long hair cat must feel like with all of those loose hairs floating around. She's hopeful she'll still have some when she goes back to school this week so that she can give some to her friends. (I hope they're happy to receive it.)

Now to the important stuff: BLOOD COUNTS!
1.4 white
9.7 hgb.
46 platelets (Will be tranfused tomorrow)
196 ANC (YES, moving on up!)

This morning's doctor said that we could fly home after Dr. Maris sees her tomorrow. Because the one way home price was $164 at 10AM and jumped to $585 per ticket for any later flight we are now booked on the 10 AM flight. My prayer is that the platelet transfusion will be complete by 7:30 AM and that Dr. Maris examines her early so that we can be in a taxi at 8:15 AM. If that doesn't work out we shall just go the airport later and see what they can do.

She's scheduled to return Wednesday, March 1st for next round of high dose chemo. Hopefully, Harriet (Traci from COSI) will be with us to help see Christi and I through the treatment. Christi cried to learn that she'd still have to receive the dreaded shots upon our return home tomorrow.

Today we started and finished "The Night I FLunked My Field Trip" (takes place in NYC - pretty cool to know streets and landmarks in the text), and currently we're reading her "Iggie's House" by Judy Blumb.

My next update should be of Christi & Buckeye!

With gratitude, Angela

PS: THANKS Cheryl Scott!

Buckeye!

Real buckeyes are nuts that grow on trees and are related to the horse chestnut.

IN THE MODERN DAY WORLD: BUCKEYE KITTY MEETS HER NEW MOMMY VIA HER BLOG!!!



With “Buckeye” in her lap, Aunt Marty called this afternoon which brought tremendous joy to Christi! (Of course now she’s quite anxious to get home to meet her new kitty!! Actually, in the middle of the night I could hear her telling every nurse who would come in to give her meds about the new cat, Buckeye.) During their chat, Christi was happy to learn it was a female and she loved hearing the cat “crying”. Aunt Marty said that the breeder was the sweetest of ladies and kindly gave Christi the best of the litter. Marty told me how Siamese cats can run into the hundreds of dollars, even up to $1,000 – much to my shock. Aunt Marty tried to pay her, but she refused. What an Angel on earth! Tonight Aunt Marty emailed pictures of Buckeye. “Ahhh, Ohhhh, She’s sooooo cute!” Christi said with the sweetest little smile upon her face. To me Buckeye looks like she was born to be Christi’s cat! (Now let’s see what Buttercup thinks.) Thanks Marty & Jeff! You are the best!!

PICTURES: Great Uncle Jeff and Great Aunt Marty holding Buckeye.



Recipe for “BUCKEYES”
1 stick butter
1 box powdered sugar
1 1/2 c. peanut butter
1 tsp. vanilla
1 pkg. (12 oz.) chocolate chips
1/2 stick paraffin
Mix butter, sugar, peanut butter and vanilla. Form into small balls. Cool.
Melt chocolate and paraffin in top of double boiler. Stick a toothpick in the candy ball and dip into the chocolate mixture, leaving part of the top uncovered. It will resemble a buckeye. They can be frozen. Goooooooooo, OSU Buckeyes!!

Grandma Nonee

Once again Nonee provided much comfort today. They started and finished an entire chapter book by 3PM. I headed out for the long walk (11 blocks) to a grocery store to try to find foods to tempt Christi. She is eating small amounts of soft foods, but that’s about it. Tomorrow I’ll try to get her on a scale to see how much she’s lost.

Sometimes I think she’s improving and other times I don’t. Today has been the first day we’ve been able to have the lights on and to even open the curtains. (My camera pics going on the blog should be improved now.) The pain meds have been increased to every three hours now instead of every four. She had been irritable about an hour before it was due and with this more frequent dosing she’s now back to her sweet, charming self shortly after receiving the dilaudid.

After asking CHOP’s Child Life to borrow their board game “Clue Jr.” for two days, Christi told me, “There are a lot of kids here and they can forget. You need to be persistent and keep asking them.” Since it was the only game she really wanted to play and she had been feeling lousy, I was on a mission! In desperation late last night, I emailed Liz Scott to see if she could tell me a store within walking distance where I could purchase one. Thankfully, she said Christi could have theirs and she kindly offered to drop it off this morning since she would be close by anyway. I met her in her van at 8:15 this morning and we were playing Clue Jr. by 9:30AM! THANK YOU, Liz!

Blood Counts have shown that she has a wee bit of an ANC! Praise God!!!! 1.0 white, 10.0 hgb., platelets 64 with an ANC of……….120!!! (Still a long way to go, but it looks like things are on the upswing now!) Mom and I are looking at flights to get us back to our home states. We’ll probably book something soon and then hope it actually works out! (Most likely Christi and I will only be home for about six days before returning to CHOP to receive another high dose round of chemo, but without a doubt “Buckeye” will get a lot of spoiling during that time!)

Love from the Big Apple!

Over the past three plus years of fighting the nasty dragon we’ve met many beautiful Angels here on earth - richly supplying us with strength, encouragement and inspiration. Two of those amazing people, drove down from NYC today to bring Christi some cheer and to spend some time with us. Well, Christi just wanted to go to sleep after a day of being awake for nearly 8 hours, but I was thankful to have a break from this hospital by sitting next to a fireplace at “The Bubble House” and visiting with two brilliant and loving women who taught many of Shayla’s preschool art classes at the Metropolitan Museum of Art. I’m still in awe at their kindness. (And thanks to my wonderful mother for staying with Christi and starting yet another book during her platelet transfusion this afternoon, so I was able to step out with friends.)

While Christi was receiving the IV form of the GCSF injection tonight, I received an email from the wonderful Dr. Maris which said, “I think that it is important to stay on the dreaded GCSF until the ANC is well above 1000. I also think we should try to start a second round of chemo the week after next.” Well, he definitely rained on her parade! And with an ANC of zero, it could be a while to reach 1,000!

Surprisingly enough, other than her hair falling out and causing her “the itchies” she’s handling it all very well. One nurse was caught a bit off guard when Christi asked, “Would you like a souvenir?” as she pulled out some hair and gave it to her. So funny!)

A very special thank you to Diane, Jack and Jake from Illinois!!

CHRISTI’S HOSPITAL SUGGESTIONS:
1.) Arrange the kids by ages on the floors so that all of the same aged kids could be together to play.
2.) The IV poles should be hooked directly to the nurses’ pagers so when they go “beep beep” the nurses would fix the poles right away. (I was thinking implant chips– he he heeee!)

CHRISTI'S FUNNY: Tonight's sweet nurse was taking Christi's temp when Christi pretended to nibble on the nurse's hand. "My compliments to the chef," she boldly stated causing the confused nurse to ask, "What?" while Christi burst into a fit of giggles. I'm relieved she's feeling better even though she is still needing pain meds 24/7 and irritable when they start to wear off.

Siamese Cat

It appears that it's nearly official - Christi's going to get an early birthday present - a Siamese cat. After Christi and I had a look at the loving Ohio Siamese cat breeder's cats available, how could I say no. This amazing breeder is named Carolyn Smith. (How many loving Caroline Smith's can Christi know? Her Grandma, her teacher and a sweetheart willing to give her a free cat with papers and shots! Amazing!) What a blessing!

Aunt Marty is hoping to bring the cat (born 10/20/05 - four months old) to her home tomorrow and to take it to her vet to be checked on Monday. Christi said she'd like to name it "Buckeye". When I asked her why she said, "Because it looks like a little buckeye - dipped in chocolate." ("Buckeye" is our state's official nut, and also the mascot of my university but that's not why she selected the name - Christi's favorite candy is a Buckeye.) I guess I don't need to say anymore - she's feeling great now - thanks to this morning's good medicine (Buckeye, the Siamese cat). Our deepest Thomas team thanks to Great Aunt Marty and to a sweetheart from the Akron / Cleveland area named "Carolyn".

MEDICAL UPDATE: Her blood counts show improvement today!
white count 1.0
ANC - still zero
hgb. 10.4
platelets - back down to 20.

Platelets have been ordered and she'll be receiving a transfusion later. She needs it - her nose keeps bleeding and we want to stop it as internal bleeding is a result of low platlets.

HAIR UPDATE: Hair Today - Gone Tomorrow! She can now reach up and pull out her hair. She actually thinks it's kind of funny. She let me snap a few photos of her offering up her hair this morning. I love her great attitude, but it still breaks my heart.

Rumor has it they're saying we may be discharged on Sunday to go back to stay at the Ronald House. That would be great!

"A Good Night"

She stayed up late last night munching and playing on the computer. After midnight I told her I was going to sleep and to tell me when she was ready to have me unplug her IV pole and get her back into her bed. About 2:00 AM I heard her say, "Why don't astronauts eat in space? Because they had a big launch!" And then I heard a response, "Are you always this cheerful?" It was from her sweet night nurse so I rolled over knowing Danny had everything under control. Hopefully, she'll have a good day too!

I'm anxious to see her blood counts this morning. I'm hoping she has an ANC and we may be out of here soon! (Praying hard!) A doctor came in just a bit ago, but when he saw she was still sleeping he said he'd be back later. (I explained she was up late playing last night.) I'm hoping to be at Ronald by Sunday, visiting with Dr. Maris on Monday and hopefully on a plane back to Ohio late Monday or Tuesday where I think we'll be able to stay for about a week before returning. (That's MY plan; we'll see what the docs have in mind. I know it all depends upon her blood counts.) Come on, white cells!

"Back on 3 South (oncology)"

As you can see, tonight we were moved down to oncology (3rd floor) and we are happy to be with familiar faces! Ahhhh! AND.......just this week computers with Internet access were installed into each room here so we're both THRILLED about that. (As I type, Christi is awake and happily playing PBS Cyberchase so I had to step out to update you via her blog.)

I hope we're on the road to recovery from the chemo. Tonight she's eating and sitting up playing on the computer. We Praise him!! We're praying for her counts to show an upward trend so that we can be discharged - most likely this weekend sometime. Then we'll go to join Grandma Nonee back at the Ronald House.

CHRISTI FUNNY: All day my sweet mother kept trying to get Christi to eat by offering her food. After she walked out of our room one time Christi looked at me and said, "She can be so annoying about that stuff." Seriously, having her here has been a total blessing! I can't even begin to describe the helpfulness and the comfort she's provided - even if she is annoying about eating (hee hee!).

CHRISTI'S JOKE: Maybe she'll be out of here by Saturday. She just gave me another joke. "Why do they say money doesn't grow on trees when banks have so many branches?"

"Blood Transfusion Day"

The doctors examined Christi this morning and believe that her counts will come up; it’s just a matter of waiting this out – and then for Dr. Maris to decide what chemos and when to start with the next round. Fast decisions were being made during her rapid progression a couple weeks ago, and I know how hard you have to slap “a freight train” and I questioned Dr. Maris after he decided on the TVD combo. “Do you think you’re hitting her hard enough?” I told this morning’s doctors to let Dr. Maris know that– he hit her hard enough and I’ll stay out of his future decision making! She’s still down!

This morning’s blood counts were:
0.8 white (yikes, still no ability to fight infection now going on a week)
6.4 hemoglobin (whole red blood cell transfusion needed)
38 platelets (decreased)
ANC 0 (Yes, that is back to zero today, ugh.)

After Mom arrived, I went out for 40 minutes of fresh air. The temp is 65 in Philly today and I had a lovely walk. When I returned, Christi was SITTING UP, WATCHING PBS, and EATING much to my delight!!!!!! (I hadn’t witnessed that much activity in a week!) I said, “What’s this? I guess I should leave more often.” She softly said, “Pain meds, Mom”. She said she could eat some more soft food so I started offering everything I knew I could obtain even though I doubted if she’d still be hungry upon my return. She sent me back out – for Chinese food. Upon that return she wanted pepperoni which Nonee then obtained from the cafeteria. (Not exactly the foods I’d like after not eating for nine days, but guess to each his/her own. And I guess I’ve never gone nine straight days without food.) I hope she keeps up this new trend!

Grandma Nonee took phone calls and catered to Christi while I was out and then this afternoon she went to Barnes and Nobles for Christi’s latest book of interest. “Who Put that Hair on My Toothbrush?” by Jerry Spinelli. (So sweet, Ms. Chicago!) And speaking of hair, she noticed that her pillowcase was full of many strands of hair this morning. She says that her soft, pink cap Aunt Marty sent her makes her head feel better. She still says that her head feels like there are little pins sticking in it. And speaking of Aunt Marty, (leave it to my Godmother) she located a Siamese kitten from a breeder in Ohio and she’s willing to get it for her great niece. (Hold off, Aunt Marty! I’m afraid it’d lead to Shayla asking for a puppy next!!! Oh my!) I understand that during Shayla’s birthday party when Aunt Marty was visiting with Christi stuck in her bed she asked Aunt Marty for a Siamese kitten and told her, “Mom can’t control what other people get me for my birthday.” (Christi’s body may be exhausted, but her mind’s not. She knew to select another “Animal Lover” and one who is a big pushover!!)

Four weeks ago, our life was very different. I had booked a room at Cedar Point’s new hotel / indoor water park “Castaway Bay” for tonight since we don’t have school tomorrow. (They were having a $89.00 mid-week special which included a hotel room and two days of water park passes for four.) I’m saddened that Christi isn’t feeling better and that we’re not all together in Sandusky, Ohio tonight. Thanks, Paw Paw for calling “Castaway Bay” and canceling our reservation. (This indoor waterpark actually has an indoor roller coaster – we thought it’d be perfect for the little Cedar Point rollercoaster riding princess – Christi! Hopefully, another time. Regardless, it’s still sad. I miss Shayne and Shayla so much!)

The first unit of blood is now complete. We played “Clue” while she received it. Currently, the second unit is being put up.

GOOD NEWS: NO MORE SHOTS! They'll be able to give her the meds via her IV.

"Wednesday"

Wednesday was a long day for Christi. I’m thankful that the narcotics were keeping her comfortable for the most part. She had a lot of eye pain and her mouth/throat aches from the mouth sores so it felt best to her to keep her eyes closed and to listen to us read to her. (My mom has been a Godsend!) Nonee finished “Maniac Magee” which was based in Philadelphia. Today, after Nonee arrives here from the Ronald House, I shall walk to a Wa Wa Store – named after a Penn. town and try to buy a package of “Tasteecakes” mentioned throughout the book so I can show Christi. (And hopefully temp her to try to eat something. As of three days ago, she already lost three pounds. I think that’s a lot when you don’t weigh so much to start with. Three more days of eating nothing and I’m certain she’s dropped even more.) I started reading “Things Not Seen” by one of her favorite authors Andrew Clements. Other than two 30 minute episodes yesterday (once in the morning to play “Chutes and Ladders” with Nonee and once last night sitting up to do some art which was lovingly sent here) she’s been flat on her back – only getting up to use the restroom.

I know she’s miserable, yet yesterday little “Christi moments” gave me smiles and brief moments of joy. While one doctor was examining her, I heard a little “meow”. The doctor thought she cried and he asked, “Does it hurt there? When did it start?” She did it again and finally I felt sorry for the doctor so I told him she was cuddling with a beanie baby cat and he must have squashed it while examining Christi’s body. After he apologized to the kitty, Christi moved its paws to wave to the doctor indicating kitty was ok and forgave him. So funny! Another time a nurse was working with her IV pole and out of nowhere Christi said, “What did the triangle say to the circle? Your life is so pointless.” Another nurse received, “What did the 90 degree angle say to the 91 degree angle? You’re so obtuse.”

Before the wonderful Nurse Practitioner Pat Brophy was grilled by Christi, she was asked “Why can’t you do a white cell transfusion on me?” and Pat did a fabulous job of explaining why that wouldn’t work and how they believe she’s going to get her white cells back up on their own. Late last night while rubbing Christi’s back she said, “Tomorrow I’m asking Dr. Pat how the shots help me because not all medicines work on me and maybe they aren’t working – so why should I have to keep getting them?” (many tears) Other than that – flat on her back, not feeling well the entire day and night.

Unfortunately, her white count came back yesterday and it was even lower than it was the night before when it was taken in the ER. This meant she had to receive the dreaded shot again last night. She told me of a few dreams she had – mainly about food and about her Great Aunt Marty. She also told us that while we are reading to her she’s building imaginary Lincoln log homes in her mind. (Sometimes we have to back up our reading because she’ll explain her mind took off with the Lincoln long project. What a hoot! What talent!) Hopefully, today will be a better day.

Blood Counts from Tuesday, Feb. 14th in ER:
1.2 white
8.3 hemoglobin
69 platelets
0 ANC

Blood Counts from Wednesday, Feb. 15th:
0.6 white (yikes)
9.8 hemoglobin
42 platelets (decreased)
ANC 18 (Yes, SOMETHING, FINALLY! I pray we’re on our way back up.)

I’ll update later today after we receive blood counts, a doctor’s exam and hopefully are moved down to the oncology floor.

"So now you sit"

What a difference a day (and a night's sleep) make!! I'm doing much better today! I went to bed, feeling happy about her decreased pain about 2 AM only to have her crying in (rib) pain at 3 AM; therefore, she's back on the dilaudid while the Tylenol also continues.

After a much needed night's sleep, I woke at 9:00 AM and when I stepped out of the bathroom at 9:30 am I saw two ABSOLUTELY LOVELY AND COMFORTING AND FAMILY faces in Christi's room - Dr. Maris and Pat Brophy! WHAT JOY! I can't even explain how nice it felt to finally believe someone was really in charge of Christi and that someone really knew her situation. Praise Him!!

Christi continues with a light fever, but I feel she's doing better today. She sat up and played "Chutes and Ladders" with Grandma Nonee. Now she wants it quiet so she can rest her eyes so Nonee is busy reading yet another good book while I made a beeline for the playroom down the hall so that I could update you. Her lack of eating anything is a concern, so a nutritionist will be coming by to explain how to get more calories into her (and not me, right?!).

Dr. Maris is confident that the chemo is working due to her decreased "lumpity bumpities" on her head and he also noted that her eyes look great. (Whew!) Upon examining her, he cancelled this morning's CT because he believes that her rib and spine pain is from the Neupogen shots. Thank you, Lord!! (When they caused bone pain years before it was in her legs, but he said this rib/spine pain was common too.) I know he likes to think of the glass half full, but it has me feeling much, much better - and how nice of him to get back into town last night and to come to see her before leaving town again today. What a Godsend Dr. Maris is to us! We have been richly blessed to be in his great care!!

So far nothing has grown in her cultures so we hope this fever and not feeling well is a result of having no immune system and that there isn't a nasty infection brewing. Dr. Maris said we'll need to talk "quality of life" and he'll need to determine what chemos to start, but that will depend on how long it takes her ANC to recover (but with it being zero, we can only go up right? hee hee!) Dr. Maris told us to plan on hanging out here for 3-6 days. "So now you sit," he said before leaving.

Finally!

Whew! As one can note via the time of this entry, it was an incredibly long day to say the very least. (OK, I won't say the very least - I need to vent!! Here goes!)

The flight went off without a hitch. (We actually landed 35 minutes AHEAD of schedule.) The amazing and compassionate Mr. Grant was even already there waiting to help with our luggage while I pushed Christi - sleeping the entire day away. (The only time she was awake today was during her brief apperance at school.) Mom was already there too. Things were looking good.....

Tim carefully drove us to CHOP (AGAIN with Mr. Grant's driving no car sickness!!) and dropped me off for what turned out to be a lovely (smile) seven plus hour stay in the sparkling clean and germ free (hee hee) emergency room at CHOP. (UGH! Yes, I'm venting!!) Then Tim took Mom to go check in at the Ronald House and she came back to the hospital for about an hour before catching the last shuttle back to Ronald. When I asked her how the room was she said, "It's in the middle of a wall." Ah, a hobo room! (hee hee!)

In the ER we discovered that Christi had a 39.2 (C) fever. They asked me how long she had the fever. (I didn't know she had one until we got there - perfect timing on our part, but I can't take any of the credit.) Her blood counts came back with a lowered hgb. (8.4). It was 11.4 yesterday; however, there is some question as to if that was accurate at home or not. Platelets up to 69 after yesterday's transfusion. Her white count went from 1.1 yesterday to 1.2 today so she bawled when she found out her ANC was still zero and there wasn't enough movement to avoid getting the shot. More crying spells occured when the first port wasn't put in correctly and it had to be taken out and accessed the second time. (It's not just the needles, but because of all of Christi's recent treatments, her chest is so red and tender.)

So in our seven hours spent in the ER, she was unable to get a pillow or to get comfortable on the stretcher while the meds were pumped in; therefore, I started and nearly finished "Maniac MaGee" by Jerry Spinelli (another "Christi Recommended" book) while she tried to rest. (And while crazy to say I think she's "better" than I've seen her in days! I stopped her pain meds tonight so we'll see how the night goes.)

We're not able to get in down on the oncology floor so we're up here on four. When a room becomes available I was told they'll move her down; however, being without an immune system she's in a special isolated room so I'm not holding my breath.

I'm anxious to hear what Dr. Maris has to say tomorrow. I think after talking with the doctor tonight a CT scan of her chest will be conducted. She did an Xray in the ER tonight. (She also ate a little bit of food, possibly more than she has in the past seven days!)

OK, now I feel better and I hope that I sleep better tonight than I have in recent days! I'm sorry this update was such a downer with my "bad attitude" tonight! We pray tomorrow will be a good day!

Missing Shayne and Shayla and so happy my Mom is here,
Angela

Two Worlds

Dad will stay with Shayla so we can pretend she has a normal childhood.

Mom will comfort Christi at CHOP while we desparately try to save her life.


We'll let the pictures say the rest.

Made It!

Earlier Shayne told Dr. Maris that the goal was to get her better and to her 4th grade Valetine party with Mrs. Smith. I don't believe she's "better" but I did wheel her in and she did pass out her valentines, but not without tears. She's just feeling horrible. Her head aches so bad. She was there for about 30 minutes which is more than she's been awake since Sunday. I hope it wasn't too hard for her classmates to see how bad she feels; I'm certain they were surprised. She's gone downhill at a rapid tempo.

My wonderful sub had some surprises for me to. Much to my surprise, he shaved his head!! And while I was planning to just quickly ran up to my room to tend to a few things, he had a steady flow of all of the students stop by to say hello (or goodbye?). Not wanting to cry, I quickly shooed them back to their classes- what thoughtful students and staff I'm so blessed to work with.

So now we are off to the airport; I'm hoping to get her some comfort soon. She came home and went straight to bed (again). She's been on dilaudid (ten times stronger than morphine) 24/7 for the past 24 hours. Dr. Maris is out of town, but copied me in on the email he sent to the doctor who will be meeting us in the Emergency Room late this afternoon and then admitting Christi from there. Dr. Maris will be back to see her tomorrow. Now that she's sleeping instead of withering in pain, my travels should be better. Nee Nee will drive me to the airport as I didn't think I could handle our luggage in addition to managing her. It'll also save on the parking. Mom and I were lucky to get a room at the Ronald House tonight - even if only a "hobo room". Gotta scoot! Thanks, all!

Journal Posted - 2/12/06

Wonderful "Webby" just informed me that he posted my 2/12/06 journal entry on Christi's website. I love that pic at the top; it contains such wonderful memories! Thanks, Eric!
http://www.christithomas.com/j060212.html

Valentine's Day!

Dearest Little Shayla,

You are my valentine! I love you so much! My heart is breaking that I just sent you off to school and soon I will be zipping shut our suitcases and flying off with Christi and we don't know what the future will bring us. I know you're having a hard time with all that has happened in the past few weeks. You are the best little sister anyone could ever ask for. You're experiencing so many strong emotions: abandonment, jealousy, love, separation, loss, worry, etc. and I know you are scared too. Most adults will never endure what you are going through. I love you so and I'll fly home from Philadelphia as soon as I can. Until then, call me every day, take care of Daddy, don't let Nee Nee give you too many sweets and know that you're in my heart! I love you, sweetheart!

Forever yours,
Mommy xoxoxo

Hair Cut

The wonderful nurses at Mercy told me to “bring her right in” when I called them at 7:00 this morning informing them she’s been in pain and says she is having difficulty breathing and that she needed to have her counts checked. I sent Shayla to school (Thanks, Caroline!) and left with Christi for the hospital.

I thought perhaps things were improving as Christi watched “Clifford” instead of curling up in a ball as she’s been doing; however, as soon as it was over she wanted the lights out and just wanted to listen to me read. They drew her blood and via flashlight I started reading Hoot by Carl H. – highly recommended, which I did for hours today. (Still at the hospital nine hours later, my sweet Heidelberg / OSU friend who stopped by ending up reading to her by flashlight too! Thanks, Lori!)

Blood counts revealed that her white count (ability to fight infection) dropped down from 1.7 in the ER Friday night to 1.1 today. With her eyes still closed she asked, “What’s my ANC?” and cried so hard learning it was still zero (meaning more shots). Her platelets were down to a mere “9” (They were 24 on Thursday which required a transfusion, up to 45 on Friday night) so platelets were ordered and a loving volunteer was called to drive to Toledo to bring them back for little Christi. (Praise be to God there are compassionate people who volunteer doing good things for others on this planet!)

While waiting for her platelets I called “The Cuttery Shoppe” to see if Cindy could possibly come to the hospital to cut off Christi’s hair as she just seemed too weak to make it to her 4:30 appointment. (In the end we were still at the hospital at 4:30 anyway.) I don’t know how Cindy did it without crying, I was a near mess but Christi now has a very short hair cut – which shouldn’t be around much longer. (Thanks sweet, sweet Cindy for doing that. You are an amazing actress!!)

Christi continues to be in a lot of pain; therefore in the past few hours we’ve made a big decision. Tomorrow the two of us will fly to Philadelphia with hopes of figuring out what this pain is. I’m hopeful a CT scan of her chest will help figure this “rib pain” and “I can’t breathe” and “My lungs feel only like the size of baseballs.” And “I’m out of breath.” Out. My Mom will fly in from Florida to help me with Christi and the wonderful Mr. Grant from Philadelphia is willing to pick us up at the airport which gives me great comfort.

I’ve called her teacher to see if she’d have their valentine pass out in the morning, but I really question if Christi will be able to make that. She’s so weak and uncomfortable. Tonight while resting with her in our bed she said, “I just wish this was over so that I could eat. I am so hungry.” It’s been about a week since she’s really had a normal amount of food. She’s eating small bites, but that’s all. It’s hard to believe one short year ago she was playing, “Happy Birthday” on the piano for Shayla and she then spent the afternoon entertaining us with her lovely background piano music. It’s heartbreaking.

As always, your prayers are appreciated during this most challenging of times.
Angela

Shayla's Seven!

(Family Photo)
("Grandma" Donna & the "7" year old!)
(Check out the cousins' shirts! "Ashley is my favorite" and "I love Shayla" - so cute!)

It doesn’t seem possible to now have a SEVEN and an EIGHT year old living in our home, but indeed we do! Praise be to God!! Shayla makes the Thomas team complete!! At the party, we had a wonderful feast compliments of my sister and of Shayla’s Godfather (Uncle Gil). The darling cake (complete with a: Buttercup, bunny, and two hamsters on it) was made by Sherri and delivered by Grandma Donna and Shayla’s Godmother (Great Aunt Marty) knew exactly the gifts to purchase for Shayne and I. Shayla had a nice day! I just wish Christi’s would have felt better.

Last night was the most difficult night Christi experienced in a very long time. She was restless complaining of pain in her: head, eyes, ribs and spine; yet refusing to take any pain medications. Oblivious to it all, I feel very guilty now! (I was cuddle up with Shayla in my bed because Christi asked Daddy to sleep with her last night. I had no idea until morning.) I try to tell myself that this is all related to the chemo; yet, it is most likely continued disease progression. She doesn’t feel well and therefore we don’t either.

Sadly, today she spent most of it in her bed. The wonderful party goers took turns visiting her in her room and of course Cousin Shelby is the perfect medicine so it was nice to see her up at times and playing with Shelby – even if not feeling the best. She did come down stairs for a brief time after Shayla finished opening her presents so she was able to hand deliver her gift she picked out last week (a new Care Bear) to her little sister. (And when I took the birthday cake up to show her before it was cut she thought it was really cute.)

I’ve already notified Mr. Jones that I will be taking Christi to the hospital to get her blood counts checked tomorrow. (This is currently scheduled for 3:30 PM – after school; however, as miserable as she is I realize now there is no way she’s going to be able to attend school tomorrow. I’ll call and get an earlier appointment scheduled as soon as they open.) When Shayne told her tonight of our plans and the possible blood and or platelet transfusions needed tomorrow she said, “Good because every time I blow my nose it’s all blood.” (Perhaps a platelet transfusion tomorrow)

Tomorrow she also has an appointment with Cindy to have her hair cut very, very, very short in preparation for “the fallout”. Even though it will be terribly sad for all of us (she worked so hard to grow it back!), this should make things more “tidy” when the dreaded event occurs.

Happy Birthday to the most awesome little sister – Shayla Marie!
Love, Mommy

PS: HAPPY BIRHTDAY, sweet Mrs. Cook!!

Pet Day

Before I tell my side of the story, I'd like to share our deepest "Thomas Team Thanks" for the incredibly kind "comments" that have been shared with us daily via this blog. Although we don't respond back to you as Eric (Webby) tells us we could we laugh, cry, Praise, thank and talk back with you in our minds. And recently, I've received quite the education about hamsters from Christi's loving "blog" readers. You are amazing! THANK YOU! We are humbled!

As far as my "holding" of the Hamsters, I think my dear husband was a wee bit inaccurate in his observations! I was sitting there, as calmly as I could - still stunned from the new arrivals, when Shayla put one on my leg and sweetly and proudly said, "Isn't it the cutest thing? Touch it, Mom." One little pet of that wiggly little critter - that was ALL I did!

"No Regrets" (to borrow a phrase we've adopted from our good NB refractory fighting friends in Oklahoma, Go Nick!) is the reason I finally decided just to take her to the ER last night. I kept saying it to Shayne. Christi had been complaining for about 24 hours of not being able to breathe and that her lungs seemed to be only the size of baseballs and that she was out of breath. I knew I'd never sleep a wink due to fear and I felt that if she passed during the night I'd never be able to live with myself so with "no regrets" I called my dear sweet friend (I met Becky in kindergarten!) and asked her to meet me at the hospital.

“Medusa” had a pretty good day, but she's far from being up to par. Currently, she's in the shower as she wanted to "try to get the rats out of my hair." (I’m thinking Medusa and snakes, but to each his own! Hee hee). Still she has no fever and we're thankful about that. I'm hoping we can all return to school on Monday; however, Shayne thinks she'll be getting blood transfusions at the hospital instead. Christi woke up about 11 AM and we took a two hour nap together later. She's been on dilaudid (narcotic for pain) pretty much 24/7. Her throat and mouth sores are nasty. I know she's not feeling the best because typically she's very polite; however, at one point during our nap she rolled over and said to me, "Tell me again, you're here why?" I responded that I was so tired from our late night at the hospital and if I got up I'd have to start cleaning the kitchen or something." She giggled. Then said, "I really only want three things for my birthday." (3 long months away!) So to appease her I asked, "What?" and she replied. "A Siamese cat, the fancy assessory set for my American Girl horse and to spend a week - ALONE at Aunt Tina's." So it appears she's still a bit "concerned" about Shayla and her new pets. Siblings! I attached a picture of the girls (Yes, that is Christi with her "new do" and the hamsters since many have asked via the blog to see them.)

The noon-two party is still on for Shayla's birthday tomorrow. We believe that Christi is probably most likely to infect herself with germs so we shall carry on and try not to worry too much about her ANC of zero. (We know we can't live life in a bubble.) Furthermore, I'm concerned that if we postpone it until next weekend something may happen with Christi and then poor Shayla never will get her 7th birthday party. Thanks to my family it's all set: My sister is bringing all of the food up from Cincinnati. (She called me and joked today, "I guess we are 50% of the people so we'll just eat it if you cancel.") Grandma Nee Nee is bringing the drinks, Grandma Donna the cake, An Angel from "Hugs and Hope" sent the paper goods and candles and Aunt Marty took our list of ideas to Mansfield and purchased Shayla's gifts. Thanks, all! It seems like time and time again it is Shayla that is overlooked. That won't be the case tomorrow! Last night when I left with Christi she was very concerned - standing at the door then the window waving goodbye to us and blowing us kisses. I wish I could get into her little mind. We love her so!

Angela

A Hamster named Bunny

Tonight landed Christi in the emergency room, but before I can tell you that story I must tell you this story...

So you may know that we have a dwarf bunny named Hamster. Now we have two dwarf hamsters one of which is named Bunny. This is all exactly how Shayla wants it and she couldn't be more pleased with the situation. Christi on the otherhand is way jealous that her sister got more pets. Her sobbing response to the news that Shayla got hamsters was "Why doesn't anyone believe me that I want a Siamese kitten". Of course Christi LOVES the hamsters and Angela thinks they are adorable too.(Proof-I saw her holding one today).

Tonight Christi was very worked up by the fact that Shayla got new pets as well as it was time for her to get her shot. Her anxiety magnified several symptoms that she had off and on the entire day: Shortness of breath, pain from mouth sores, and rapid heart rate. It was decided for our peace of mind that we would take Christi into the emergency room to be examined and have her counts checked. So Angela's Friday night on the town was spent with her good friend Becky (nurse) at Mercy Hospital with Christi. Nothing was found of any interest. Just an ANC of zero-no immune system. This just means more days of shots...poor thing.

Shayne

Not Today Either

(PHOTO: I wish she were still feeling like this now! This was taken while at CHOP last week. It reminds me of when I was pregnant with her and Dr. Cordero did an ultrasound and said, "I think it's a girl, but until I see a cell phone I'm not going to say it's a girl." Looks all girl to me! Chatting and shopping!!)

Last night Christi finally perked up and watched a DVD while making those cute little balloons clowns blow up and twist. (She's really good at it!) She ate a popsicle (first thing all day) and I thought things were on the upswing. I emailed my wonderful substitute teacher informing him I thought we'd both be back at school on Friday.

The shot was hard last night. At one point Christi said, "Dad, give it to Buttercup instead. I don't care if it kills her. I don't want that shot!!!" Christi loves her cat; therefore, I knew how horrible the injection was.

Then midnight arrived and her horrible pain was back. Her mouth/throat sores from the chemo, her eyes and her headaches all returned. We gave her different pain medications at various points throughout the night. I woke her at 6:00 AM and asked if she thought we could go to school or if I should call Mr. Jones to teach for me today and she whispered, "Call Mr. Jones". So sadly I did. She just loves school and I know how much she wants to get back to school and her friends!

Today she's complained that her back hurts as does her head, especially where the bumps are. I said, "I didn't feel any bumps yesterday." She said, "They're tiny now, but they really hurt." She ate a bit of a milkshake, and a few spoonfuls of Cheerios but that's all so far today.

Thankfully, it appears that Shayla just had a case of a "nervous stomach". She was fine at Mrs. Depinet's and fine at Grandma Nee Nee's. I do think she has been very worried about Christi and perhaps this is what happened. (She's also not very fond of school although I am always happy to get responses from staff about how polite she is.) I wish we had a guidance counselor at our k-8 school so that Shayla could talk to someone, but funding cuts a couple of years ago removed that option. Shayla seems okay, but I really wonder what's going on and how we can help her.

Well, Grandma Nee Nee used to be really high on my "I want to grow up and be just like you list" but all that has changed in the past 24 hours!!!!! (She's #1 on Shayla's list now, but not mine.) Grandma Nee Nee bought Shayla the pet she's been wanting - and not just ONE, but TWO HAMSTERS! Furthermore, Nee Nee didn't think they belonged in her condo as Shayne and I suggested, but in Shayla's room. Happy 7th Birthday, Shayla! (And how do you know if they're male or female? I'm thinking we may have TONS of hamsters in days to come.) ARGHGFGGGGGGGGGHHHHHH!!!! OK, I'm over it now. Yet when Christi woke up today she asked, "Why does Shayla have three pets and I only have one?" Oh my!!

So Shayla arrived home this morning to get changed into fresh clothes to go to school. Well we didn't communicate clearly enough to Nee Nee as she told Shayla no school today and she was coming home. When Shayla walked in the house at 8:00 AM I had her clean clothes lined up. She told me that Nee Nee said no school and I had to tell her that wasn't correct. She ran past me and locked herself in her upstairs bedroom sobbing. This is so hard! I'm anxious for her to come home from school today - except she'll probably ask me to hold one of her furry critters! YIKES! I love you sweet Shayla!

When it rains.....

Christi was asleep by 7:00 PM (very unusual for the child that stays up reading at night much later than Shayne and I possibly can). I was sound asleep with Shayla when I heard Christi calling for me at 2:45 AM. Neither one of us slept much after that. Her mouth sores are causing so much mouth and throat pain. Her eyes are hurting her too. Finally at 5:45 AM, I told her I'd send Daddy in to cuddle while I took a shower because we had to get to the hospital soon and hopefully they'd make her feel better. I showed Shayne where Shayla's clothes were set out and I took off for the hospital with Christi knowing Christi's teacher would be taking Shayla to school for us today.

Arriving at the hospital, she was close to having a fever. (I'm still hoping we're going to somehow avoid that dreaded fever which will require about a week's hospitalization - somewhere.) A sweet Angel at Mercy had driven up to Toledo last night so that her platlets would be ready for her this morning. (Amazing volunteers! We praise Him!!) THANK YOU precious blood donors for saving our daughter's life with your priceless gift of blood!!

She was able to receive both platelets and whole red blood cells in less than seven hours. Yahoo! (Incredible nurses and staff! Thanks, Doug and all!) She did spike a fever during the process, but it didn't go over 100.4 which is what it was when we left for home. Her eyes were hurting in addition to her mouth sores so she just wanted me to read to her the entire time, so I did. We finished one book and have just three chapters left of "Lunch Money" by Andrew Clements. Shayne, much to my delight, suprised us by popping in for a little bit.

Soon afterward I received a text message from him. "Shayla threw up at school. They sent her to Shari's." Oh, no!!!! Poor Shayla!!!! I had no idea anything was wrong with her and of course my mind raced to Christi's current inability to fight off infection and yet knew I had to get her out of Shari's home before her kids came home from school. Darn this beast! Thankfully, it was Grandma Nee Nee to the rescue!! She picked up Shayla at Shari's and is taking her to her condo so that the girls will be separated. My heart breaks for Shayla!

Currently, Christi isn't feeling the best but she's interested in watching cartoons now - so I thought I'd put up a quick update and say thank you for your love and prayers! We'll see what tomorrow brings. I'm still hopeful about returning to school, but time will tell.

GOOD NEWS: I can't feel any "bumpity bumps" on her forehead or her jaw today. Praise God! Her head was hurting so much I couldn't let my hand wander to the top of her head, but maybe I'll check later. I'm hoping she'll be one of the 60% of kids who will have this chemo work for 2-14 months - oh, how about 18 months, dear Lord?!!!

Photo: Wrapped in hugs! (Christi's delightful art teacher delivered a lovely and colorful "hug" from all of the kids at her school. Precious!)

Photo: Daddy stopped by a read a couple of chapters during his lunch break today.