Journal Entry


Wednesday, April 28, 2004

"Great oaks from little acorns grow."

During my pregnancy with Christi, Shayne and I decided that we would plant a "birth tree" in our front lawn with the birth of each child. Therefore, Shayne proudly planted a Dogwood tree following Christi's birth - a tree that blooms in May each year in honor of her birth month. When we first learned that I pregnant with Christi, she felt like a little "peanut" in my tummy - hence her nickname "Peanut". Of course with our second pregnancy, we knew we needed a little nickname for Shayla too. (And while Shayne joked it would be "Butter" and a third child would be "Jelly" we came up with "Acorn" instead.) Following Shayla's birth, it was only appropriate to plant an Oak Tree. Sadly, the tree died and for a few years we have been contemplating what to do about it. Last Saturday, Shayla and Shayne headed out to the nursery to buy this summer's mulch and flowers. At the nursery, Shayne discussed the situation with now five year old Shayla and asked her to pick out something to celebrate her life. She chose a lovely, lilac bush and helped Daddy plant it in the front yard in her honor! Even though she'll always be our little "Acorn" the bush is GORGEOUS - just like "Shayla, the Great!!" We love you, precious!

A week ago Christi and I had a free day to spend since we didn't have to be to the airport until our 5:30 flight home. Therefore, we took the $20.00 that our friends in Tiffin gave Christi to spend on something she wanted, and down the street we walked hand-in-hand to campus on a very warm and sunny afternoon. The University of Penn bookstore is actually a Barnes & Noble with a tremendous, large, quality children's section. Yahoo! (Shayne had been there and told me we'd LOVE it! That turned out to be an understatement!) For a couple of hours, Christi and I soaked in the experience before Christi made her final decision regarding her purchases. Next, we went upstairs to the cafe where we enjoyed a leisurely snack of trail mix and water while the busy college students were frantically running in and out. As we sat there, I realize that this is exactly what I hoped I'd do with my daughters some day - meet them on campus and enjoy some very special, loving time together. I see my time is now and I shall treasure the memories of that fond, beautiful day together and I shall hope for many more opportunities like last week!

After a flawless flight back to Columbus Thursday night, I was very tired and really looking forward to getting back home. Then as we approached the van, in the cold, pouring rain, I noticed the flat tire. I told Christi it was going to be a bit longer than just the two hour drive home and I called AAA. (What a blessing!!! Never have I ever had to call AAA before and never was I so RELIEVED to have it. Even though finances aren't the best, I renewed my membership just because of the increased driving we've been doing with Christi. Thank you, Lord!) Christi made the best of the situation by creating some art work for the individual who would come to our rescue in the cold, cold pouring rain an hour later. She passed me a note which said:

Dear Mom,

How long do you think we will sit here? I really want to go to Skylines! I about threw up on the plane because I was so hungry!

Love, Christi

We made a pit stop half way home to have "Uncle Jeffy" put more air in the tire to get us the rest of the way. We arrived home before midnight and found a caring teacher friend, Anne, had given Shayne a crock pot full of warm food at Shayla's gymnastics class. What a blessing as Christi and I devoured a meal before crashing for the night. As I went to take Christi to school in the morning, I saw that again the tire was flat so I borrowed Shayne's truck while he pumped up the tire to get me to Walmart. I'm thrilled to say that I now have a new tire as there was a screw in the other tire - just another little bump in the road of life I guess.

We went to church over the weekend at my Mom's church. Christi made her "second communion" with Father Kent! That was very special as he was instrumental in developing the Good Shepherd preschool program at St. Wendlin which Christi loved and he often served as her teacher as well. Before Mass we told Father about Christi's first communion the previous week and he wished her a happy "second" communion. (smile)

The ABT - 751 (so new they haven't even named it yet!) seems to be going just fine for Christi. So far (day seven of twenty one days on medication) she's not yet had any of the side effects, but I do believe it's causing some fatigue - and with Christi being tired comes Christi being cranky. I truly cannot pinpoint it on the new oral chemotherapy though. Time will tell whether she's just tired, or if it's the medication. Regardless, it's a reversible side effect we can all manage.

On Tuesday, she unfortunately had to have THREE needles stuck into her arms before they could get the blood drawn. The poor thing. That has never happened and my heart just broke for her even though I knew everyone was trying their best and they were so kind about it. (Silently, I pondered why Gail couldn't just live with us and be Christi's private nurse. We miss Gail and all of our NYC friends very much!) I promised Christi that if they didn't get it the third time, then they weren't getting it at all and we were heading off to gymnastics without leaving any blood behind. Well, the third time was a charm - Praise be to God! While these drugs shouldn't drop her blood counts, because it's a Phase I clinical trial they need the data and that is why they're requesting twice per week blood draws. (We'll do what we can.....but this little girl is pretty busy living life to the fullest each day to be going to a yucky, old, stinking hospital. Definitely not a place of choice! And I believe I can even smell one from the parking lot by now! I'm serious! They all smell the same - yuck! Thankfully, they all have the most compassionate, hard working and loving employees inside! It is their saving grace and we are most thankful - even if we're really sick of it all!)

I called from school today to get her blood counts. They were........drum roll please (good news!).........white count - 4.8 NORMAL!!!!, hemoglobin 11.0 - nearly NORMAL, platelets 112 - we'll take it. She needs to stay above 100 in order to remain eligible for ABT, and an ANC of 2,800. NORMAL! Yahoo! Great counts, Christi! (The poor lady on the phone reading me her counts had to hear my cheer of: YES! THANK GOD! with each normal number she gave me! It was really exciting! I just couldn't' help it!)

Also today, I took her after school to have her examined by our family doctor. (Yet another weekly requirement of this study and one I truly don't see the need for, but I'm playing along so far, but it's not going to last long.) After watching the mundane exam as the family doctor followed the CHOP oncologists' order to conduct neuropathy testing (checking for nerve damage), it just reconfirmed my belief that it was yet another unnecessary waste of our time and money. At least the Doctor agreed with me. (It doesn't seem right if a child isn't have any nerve pain complaints - is fully participating in school, ballet, racing the neighbor boy on her bike and taking gymnastic lessons while playing the piano, the computer and drawing daily - I don't think there is any neuropathy going on here!!!! She barely put aside her Gameboy to let him to the exam. OK, I'm done venting now!) The following week is her birthday and there will be NO doctors visits on her birthday; she doesn't want to even see anyone wearing any white coats on her special day and I can't say that I do either. She wants to go to school and pass out her birthday treat to her second grade class so she shall. Christi has never celebrated a birthday at school so this will be HUGE to her even if it only consists of passing out a treat. She's already decided we are making "no bake cookies" because, "I can cook them all by myself and I really like to eat them so I think my class will too."

I spent countless hours this week attempting to make our arrangements to get back to Philly on May 13th and 14th for the tests/scans. Trying to obtain a flight for less than $1,000 was absolutely impossible. (Apparently, a Saturday night stay over is required for a cheaper flight and Christi and I want to make this trip in less than 48 hours - not stay for two extra days, so things were looking very dim and I wasn't looking forward to driving given the number of miles on my van and the flat tire we just returned to in Columbus.) I can't believe the hours and hours I invested into this search and yet NOTHING prevailed as workable or affordable. There were also other "Angels on Earth" frantically trying to help us out, but without success! The frequent flyer miles that were offered just didn't have the routes and times that we needed and I hated to call Angel Flight again so very soon after that sweet, sweet Dale had just invested so much in getting us there a month ago. I had contacted other flight programs to help in situations like this, but was turned down over and over - mainly due to needing three weeks for processing. $1,000 per ticket just wasn't going to happen.

Finally, one of Shayne's tremendous banking school friends (Gwen) from the Aloha State who had been working sooooooooooo hard on this was able to arrange for one free ticket from a travel voucher or frequent flyer miles or something. It was perfect! I had her book it - not knowing exactly how I was going to get myself on the same plane, but determined to do so. Then, after more searching and becoming VERY creative, I discovered that I could book two round trips (for me) for a total of $500.00. (It was $1,000 for one round trip, but $500 for two - figure that one out! I'm still shaking my head! And obviously I'll just be on two of those flights and not four.) The non-stop flights with US Airways out of Columbus will have us in Philly for less than 36 hours - yahoo!!!

And, what will be a INCREDIBLE surprise for Christi is that we'll get to have a birthday celebration and a slumber party with "Harriet" and "Elizabeth" - her favorite COSI friends on her birthday night. (Now I'm a bit concerned as Traci has a rat for a pet and she also said she wouldn't put my bra in the freezer - unless I fell asleep first! Yikes!! I always fall asleep first! I'm doomed!) Now the only possible glitch is I just received an email from Gwen in Hawaii who mentioned something about the booked flight on "United" - oh my! I booked my flights with US Airways. Hmmmmmmm! I hope Gwen just made a little typo and with the five hour difference in time communications are not really easy. My prayer request is that we are both on the same flights with US Airways both ways.

In summary, another great week with a pain-free, happy child who has not complained once about taking her new pills. We've been richly blessed!!! Thank you, prayer partners!! And thank you for checking in on Christi.

Much love,
Angela

Angela's Funny: "Will the REAL webmaster please stand up?" "Standing!" Eric replied.

When we were at Ronald last Thursday, I had received word via some emails that someone had set up a fake caringbridge website supposedly about their daughter, when in fact it was really Christi! Imagine my surprise to open up a site and not only see pictures of Christi (renamed to another child) but also to read my word-for-word journal entries with just Christi's name changed to that of another girl. My first thought was, "Someone in our state went to jail for two years for doing something like this not too long ago." (Shayne's joking comment was, "I wonder what my other wife is like.") Well, by the time I got back home the site was shut down. Wild!

Another Funny heard by Angela: My awesome kindergarten students have started creating our Mother's Day books which will be their gifts to their Mothers. I accidentally ran an extra copy of one of the pages and when I realized my error I said, "Then I'll write this one for my Mother." Well, that spurred many comments. One child said, "You have a Mother?" and then another child replied, "Of course she has a Mother. How else would she have got boring?" (Boring, ahh, yes - thank you little friend, extra points for you! ha!!) Seriously, working with my little friends continues to be a very, very bright spot in my life!!!! They are awesome! I've been richly blessed!

Christi's Joke: What is the best thing to put in a pie? (Your teeth!)

Shayla's Joke: What runs across the floor, but has no legs (car-pet)

Christi's Joke: What pet do you always find on the floor? (car-pet)

Shayla's Joke: What did one eye say to the other? (There's something that smells between us!)

Shayla's Funny: During Mass last weekend Shayla asked, "When can I go to that Bible School with the mosquitos again?" (That was TWO years ago at Attica, Shayla! Good memory! Too funny!)

What's Next? The ABT - 751 (oral chemotherapy drugs) will be taken daily until May 11th. Her 7th birthday is May 12th. She will test/scan May 13th and 14th back in Philadelphia. If the test results show stable or decreased disease than we shall continue on with these drugs pending her heart function is still okay too. If we see additional amount of tumor burden, it is of my opinion that she will go back on the two week straight IV drip of Irinotecan that she did after school (August - November) while waiting to get into the MIBG trial last November.

Her 7th birthday party will be Sunday, May 16th at the Ritz Theatre where the children (of all ages) will be treated to "Rumpelstiltskin" by an awesome group we hired called Madcaps out of Cincinnati, Ohio. The children will then make a variety of puppets and arts/crafts and have birthday cupcakes. This is our family treat to the children of our friends and family and prayer warriors. Anyone in attendance who would like to make a small donation to the "Ritz Theatre Education Committee" is welcome to do so instead of gifts. We will have a wrapped box out for this on a table. No gifts will be permitted. Period. If you'd like to attend with your little ones, please email us by May 8th so that I can order the correct amount of art materials and have enough cupcakes. We hope you can come as it should be a fun, educational afternoon spent in the company of God's precious children. Thanks for checking in!

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