Journal Entry


Monday evening, February 16, 2004

"We can enjoy full health when we understand health is wholeness. This implies connectedness to family, friends, tribe, nation, humanity, the earth and whatever higher power one conceives of as creator of the universe. We cannot enjoy full health as isolated separate beings."

Andrew Weil, M.D.

Today was our final day spent here in the "Valley of the Sun". Christi remains feeling fabulous and I can't believe our good fortune! Thank you, prayer warriors!! We will forever be grateful!!! I found the above quote thought provoking as I stood surrounded by family pushing our bodies back against a healing wall as we all meditated at a healing garden where Shayne's sister took us on Friday morning. When we depart Phoenix very early tomorrow morning, we will definitely leave feeling "connected". We've had a most enjoyable past five days here in sunny, picturesque Arizona surrounded by family and friends. Christi's skin now appears to be perfectly normal and her lips are much improved. Thank you, Lord! We have been blessed with clear blue skies and temperatures in the 60s and 70s each day.

Last Tuesday night, Shayne's wonderful Mother (Grandma Nee Nee) brought a little silver shiny scooter over for Shayla's birthday gift. It was the perfect gift for our active little one! I told Shayne, "I couldn't have thought of a better gift for Shayla!" She LOVED it. When I came home that night from my parent - teacher conferences, Shayla was attempting to ride it through the kitchen and in the hallways. I thought, "You go, girl!" but I didn't say it and instead warned her to be careful. (Soon it'll be outside. I hope! Smile. Thanks, Joan!!)

Wednesday afternoon we met with Toledo Mercy Children's beautiful and helpful pediatric oncologist – Dr. Jasty who is willing to help us out while we are at home. (Another incredible blessing which saves us much time and money from making the four hour round trip drive to Columbus.) Dr. Jasty will come to Mercy Hospital of Tiffin, five minutes from home with free parking, once a month! Yahoo! I still can't believe it! YES! She's willing to work with the Doctors caring for Christi to take care of her needs while we are at home. With Christi coloring in another room, we discussed knowing the "score" of neuroblastoma and attempting to give Christi a good qualify of life for as long as possible. I don't know if this oncologist has seen any other cases of neuroblastoma before, but Shayne and I feel pretty knowledgeable about the disease and what we want to do to try to beat it. Guidance is generously provided from the many oncologists who know what trials are available. We noticed this week when our NYC oncologist emailed us he included Christi's: Columbus, Philadelphia and now Toledo oncologist along with the entire NYC team of oncs. It's nice to have everyone in the loop since not everyone can offer the variety of treatments needed to fight something so very rare as this cancer inside Christi.

After Christi's appointment, I picked up Shayla at preschool where I learned she told her teachers, "I'm going to the desert for my birthday." (Shayla, as always, cracks me up!) She never knows her birth date, but always says, "It's the same day as Abe Lincoln's!" (like they're old buddies!) Someday she'll also learn it was the same day as President Clinton's Impeachment - February 12, 1999.

While I was meeting with other teachers and administrators Wednesday night in Columbus, Shayne took the girls to a sporting good's store (Gaylan's) where they went rock climbing. Christi attempted the wall twice and Shayla once. The girls even goaded Shayne into climbing. They also visited a Petco where Christi eyed up supplies she will need when she starts the enterprise she's been planning-Christi's Pet Business. As soon as they came back and picked me up, we were off to the hotel where we had their indoor pool all to ourselves. (I think we could have had their outdoor pool all to ourselves too! Hee hee! Brrrrrr.)

The girls did fabulous with both of the flights to Phoenix - drawing and reading. Unfortunately, I didn't check the battery for Christi's Gameboy so that wasn't an option, but she read an entire chapter book instead. On the flight we reminded Christi about one of her very first visits to see her Aunt V when she was just 15 months old. During that flight, we practiced with her saying, "Aunt V! Aunt V!" She mastered it and we knew that Shayne's sister would be so happy! When we landed (August of 1998) it was nearly 120 degrees and Christi just kept saying, "Hot! Hot!" instead of "Aunt V!" like we practiced. Well, "Aunt V! Aunt V!" was definitely heard on this trip when we spotted her near baggage claim! What a beautiful, long overdue sight!

On the way to Vaunie's apartment, we stopped by her workplace. It was great to see her co-workers. Shayne and I were able to say thanks in person to her boss for using Christi's artwork on their BNG and Designer Skin 2002 Holiday Cards. That was so very special and very much appreciated.

Shayne and Cousin Josh took the girls to the park where I just kept thinking, "When else will Shayla ever celebrate her February birthday playing in the sun without a coat under clear blue skies?" Aunt V told us that she doesn't know any kids, but she had lined up a party with plenty of kids and boy was she right!!! At Shayla's birthday party there were twelve beautiful children and fourteen adults. Aunt V even had three of her Mexican friends come over just to do all of the cooking - fine Mexican delicacies! Even though two of them couldn't speak English and my Spanish is lame at best, I enjoyed the challenge of trying to communicate with them. (Thank you to our wonderful high school Spanish Teacher - Senora Kean!) It sort of turned into playing Charades too! (There is a universal symbol for cutting boards I think. I knew exactly what they needed. Hee hee)

Where we live in rural Ohio everyone looks exactly the same so I marveled at watching Christi and Shayla play with all of the beautiful Mexican children while they were the only white kids. At one point I observed two little boys teaching Christi Spanish words while she was teaching them some Japanese words - a rich exchange of language over a huge bowl of berries! Wow! I hadn't experienced so much culture since we left NYC; it was FABULOUS! Thanks, Vaunie and to all of the sweet party attendees! (And now Shayla thinks she's really tough as she broke open the piñata on her very first strike! Wow!) Feliz Cinco Cumpleanos, Senorita Shayla!

Friday was spent playing and enjoying Aunt V's company. She took us to a Healing Garden where she has done a lot of volunteer work for her degree in Western Herbalism. Christi and Shayla played happily in their gardens and participated in the various educational activities. They particularly liked the water cycle and the giant vegetables that where under construction. Then it was on to Pappago Park where we hiked to the top of the buttes (pronounced like beaut) where we enjoyed great conversation and sketching of the beautiful views. Along the way, Christi retold the story of how when she was 26 months old she slipped off the trail and fell into a cactus. She doesn't remember it, but she's heard the story so many times she thinks she does. Although I did remove cactus needles from her little bum bum, the story is really jazzed up when she tells it. I wonder what her "Cancer Warrior" stories will be like one day and pray that she has the opportunity to tell them in ten or twenty years.

A non-cancer story that she will certainly be telling is her adventures rock climbing with her fabulous Daddy. Having gained some basic skills at Gaylans, she was ready to take on the real thing. She and her Dad scurried, climbed, and otherwise managed to propel themselves up out of sight. This was great fun for Christi and a real sense of achievement to go where most people were not. Meanwhile I was a nervous wreck wondering where they were and worrying about their safety! All was fine!

Saturday was the day that Arizona officially became our country's 48th state - February 14, 1912. It was also Valentine's Day and we praise God that it was a Valentine's Day spent VERY differently than last year's when Christi was hospitalized in NYC and Shayla was still back in Ohio where she had been since late December - far away from us. Those were tough times!

This year the girls stayed back with Aunt V and Cousin Josh while Shayne and I went hiking in the North Mountain Reserve. We selected a four mile trail (Shaw Butte Trail #306) with an elevation of 2,100 feet and rated as a moderate to difficult hike. I won't say I wasn't winded, but I will say that I was surprised I actually made it as I'm terribly out of shape. In preparation for this trip, which was put together very quickly, a few weeks ago I said to Shayne, "Do you think I have time to get in shape for mountain hiking?" knowing that is something Shayne and I have thoroughly enjoyed on our trips to Arizona and I have always trained for strenuous hiking in the past. As polite as he could he said, "Angela, you don't have time to train with all you're doing." Well, my legs still hurt, but the victorious feeling remains. There's just something indescribable about standing on the top of a deserted mountain top seeing a sprawling city far down in the valley and other mountains far off in the distance. Breathtaking! I told Shayne, "I wonder if this is how God feels watching over all of us."

That evening we went out to a dive of a Mexican restaurant and enjoyed guacamole. Ahh! Thanks Aunt V and Josh for giving Shayne and I a very special, romantic Valentine's Day together. Many have advised us to take care of our marriage during this cancer battle and that's not something we've really done with any great thought so the day and evening spent together was very special. The next morning, my legs were fine, but my shoulders were killing me. I'll not going to blame that on the hike; however, but perhaps on the yoga poses Vaunie had me in at her apartment helping me to tone my many body parts which greatly need toning or the fact that I went test driving with some of her exercise equipment. Shayne and I went on a second hike the next morning that was also rated moderate to difficult. This one was 1.7 miles - again an exhilarating feeling reaching the top and enjoying God's gorgeous work!

Christi and Shayla were able to spend some good quality time with aunt V as well as get acquainted with Kristopher - Joshua's baby. Christi eagerly accepted the role of babysitter (at a rate of two dollars a day). She even changed messy diapers. I can remember an inpatient stay when one of the things Christi said she looked forward to was being a baby sitter. It is nice to see her experience such mundane things. Shayla served as comic relief for this little babysitters club.

Sunday night everyone, except me, hiked up to the "Hole in The Rock" to watch a wonderful Arizona sunset. Shayla had singularity of purpose on her hike: expanding her rock collection. Christi had two objectives: to carry Kristopher in the backpack - a 22lb 6 month old, which she did for about 100 yards and also to climb up the face of the butte to the summit. Shayne said he climbed up as far as he could and then pushed Christi up as far as he could reach. This enabled her to be high enough that another climber could reach down and pull her up. There was no talking her out of this. She has become quite fearless and seems at ease "on the edge". Bravery born from facing down cancer.

Sunday evening, while the family was hiking, I was able to visit with another NB Mommy who lives here in Phoenix. I had a wonderful (of course emotional) time at Laura's place where she shared with me the beautiful scrapbook pages she's made to celebrate sweet little Madison's four short years of life. I also fell in love with a tremendous oil painting of a close up photo taken of Madison shortly before she died that someone had given Laura. It was stunning hanging over her couch! It truly felt like I'd known Laura forever! I talked rapidly - knowing fully she'd know and understand everything I told her while listening intently to all she shared with me regarding Madison's experiences with treatment and with her death. Life is so unfair. I continue to struggle with how God could take so many wonderful kids from such dedicated and supportive parents. Laura did EVERYTHING possible to save Madison's life - even had her bathed at Lourdes in France. Yet there are parents who wouldn't walk across the street to save their child's life much less give up their career, home, savings, etc. to try to help them. It doesn't make any sense! I felt very guilty knowing I would be tucking in TWO little girls that night while Laura wouldn't get to do that at all! I shall continue to put my trust in God and to know that the world is a better place because of Madison's work done here on earth. Thank you, Laura for your beautiful, precious Angel with me!

Today (Monday) was spent visiting at my wonderful cousin, Lora and her family's home. The girls really enjoyed playing with their delightful son, Alex, while Shayne and I were tickled to see their sweet, precious baby girl. The weather outside was again gorgeous, so the girls swam in their pool and enjoyed an afternoon spent playing in their huge sandbox. We had a lovely day!

I would like to thank my dear, sweet friend Gina (Harrison's Mommy from the Carolinas) for delivering flowers to Christi's wonderful teacher and nurse back in NYC. Gina's amazing. Poor Harrison is in the hospital right now, yet she knew how important it was for me to get a Valentine's treat to Gail and Anne Marie - two remarkable individuals who made every single day Christi spent in NYC a little bit more pleasant. We shall never forget their kindness, nor Gina's. I really miss our NY friends!!

The day we flew out to Phoenix, thanks to those great travel vouchers we received for taking a later flight back to NYC from Christi's Make a Wish trip giving us this incredible time out here, I sadly learned was the same day God called another Neuroblastoma child into His kingdom. Brady D. and Luke S. were both buried on Valentine's Day. (I had wanted to attend Luke's service since it was just an hour from our home, but we were here in Phoenix.) Brave Brady Dove and Christi did high dose MIBG at the exact same time last November, but Brady endured the treatment in Michigan instead of Philadelphia. We had many email conversations with his sweet Mother since our children had so much in common. While Brady had been hospitalized he was doing much better and was walking and getting ready to go home on the day he died. This wicked disease is so darn unpredictable. No one should have to bury their child or grandchild on Valentine's Day! Brady's family said that:

Brady has won the fight, he has crossed the finished line to be with his heavenly Father in heaven....Brady is truly "A Winner!"

I ask Christi's tremendous Prayer Warriors, to follow Brady's family's requests by praying for their strength as they go through this difficult time and that that they may feel God's arms around them as HE welcomes Brady home. Our love, thoughts and prayers are with the entire Dove family.

To put closure on this entry and on our wonderful trip to the Southwest, I will end with this beautiful Native American Proverb: Yigaquu osaniyu adanvto adadoligi nigohilvi nasquv utloyasdi nihi which means: May the Great Spirit's Blessings Always Be With You!

With love and thanks to you all!
Angela and the Christi Crew

Christi's Joke: What happens if a dog goes to the desert? You get a "hot" dog!

What's Next: Tomorrow morning at 5:15 AM we shall depart Aunt V's apartment in the desert and begin our flight back to Columbus. Wednesday will find us all back to work and to school. Christi's blood counts will be checked on Thursday morning at our local hospital and I'm already anxious to see the results. We shall have them access and draw from her port since it's been 30 days since her port has been used and we don't want it to get clotted. While I hope it's not the case, it is of my opinion that her hemoglobin has continued to drop while on this trip as she's a bit pale and tired, but I do believe it's above transfusion levels and partly due to the activities in which she's been partaking. Scans and tests will be set up for mid-March back in Philadelphia to see if this CRA drug treatment is helping to rid her bone marrow of neuroblastoma, or if her disease is worse. Her plans to have a day where she shares cookies and sells lemonade for Alex's Lemonade Stand are still in the works. You know Christi's great sense of humor. I think she'll chuckle watching "old people" get stuck with needles while the "little kids" get a break from that torture on her day. I don't have any sort of time frame yet, but I know that the Thomas Team is totally committed to giving back to the community like so many have given to us for the past 18 months. I shall keep you posted once definite plans were underway. Have a great week! Thank you, friends! We've been blessed!

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