Abby's Journey Archive

This is probably our favorite time of year. For anyone who might not be local to us, usually in central Arizona the weather cools off beginning in late September and early October, and we settle down with lows in the 45-60 degree (F) range and highs from 75-85 degrees (F). Occasionally we will have some fall rain showers that encourage the desert to bloom, and it can be spectacular. The desert has a beauty that is completely unique, and it is an incredible testimony to God's creative genius that He could create animals and plants that can survive in these conditions, but still demonstrate such delicate beauty and diversity.

We arose early this morning to head for the Desert Botanical Garden up by the Phoenix Zoo. The Garden has a Monarch butterfly exhibit each Fall and the kids were just ecstatic about it. It was so cute to see Elizabeth and Daniel crouching down, examining the butterflies, exercising great restraint to not accidentally stomp on them.

We also observed lots of desert wildflowers and the dizzying array of cacti that flourish here in the desert climate. The Garden has cacti from literally all over the world. The kids' favorite was probably the "Old Man Cactus," which grows thin fibers that look exactly like white hair.

We were blessed with company at the Garden in the form of Ginger Trudgen and her girls Alex, Audrey, and Lily. They are some of our best friends and live here in our neighborhood with us.

Abby has responded well to her increased Decadron dose and woke for the second morning today without a headache and only very mild nausea. She is on 4mg every day now. She is having some mood swings associated with the steroid, so our prayer is that we can get her intracranial swelling under control and then reduce her dosage again.

Thank you so much for your prayers. We heard from many of you after our Monday post!

I have 2 opportunities to share with you all. First, some of you may remember me mentioning Haley Knutsen who died last month. Well, her supporters are carrying on in Haley's name and have organized a car raffle to benefit Positive Impact (the organization that had Abby and her friends dance for their Scrub Ball). If you are interested in purchasing a ticket for the raffle, go to http://hopeforhaley.com/car.htm

Second, would you please pray for some new friends of ours? I met with a dear woman last night whose 7 year old son has recently been diagnosed with a PNET (Abby's tumor is also a PNET only with Astrocytoma differentiation). His name is Carlin and his parents are Lynn and Sammy. Carlin had surgery a few weeks ago and is currently receiving chemotherapy and radiation. His surgery left him paralyzed on one side of his body and he's currently unable to talk or eat. He communicates with his parents by gesturing and spelling. I know Carlin and his family will appreciate your prayers for wisdom, strength and peace.

Also, for those of you with children who like to write, Lynn says Carlin likes receiving letters. So, anyone who wants to send him a letter can either email it to me or send it in the mail and I'll forward it to him.

In late May of 2004 Amy and I found ourselves at a large conference table at Banner Desert accompanied by Drs. Panchoosingh and Abella, one of BDMC's social workers (Heidi), our Child Life specialist (Debbie), and I can't remember who else. Like many days since then it had been an emotional rollercoaster. Abby was still inpatient following her first surgery. We had not yet been to Washington D. C. to consult with Dr. Packer. Make-A-Wish was still something foreign to us. And chemotherapy and radiation therapy were still things that happened to "other people." I remember being extremely tired, hyper-alert, but still feeling like I was trapped in a surrealistic world as we heard Dr. Panchoosingh say the words "Atypical Teratoid-Rhabdoid Tumor." Whatever it was, I remember thinking, it didn't sound good. I asked the docs how long a typical ATRT victim survives and Dr. Abella replied "12 to 18 months is a good run."

That was 17 months and 1 week ago. Yesterday we reached a milestone we didn't think we would—Abby celebrated her 7th birthday. It was a day of much rejoicing, indeed a whole weekend of such. We traveled to Tucson late Friday afternoon for a baby shower in honor of little Sienna, new arrival to Rich and Laura (Amy's brother and sister-in-law). Saturday all our Tucson and Sierra Vista-based extended family converged on Amy's parents' place for our fall birthday party (Amber, Cheyenne, Daniel, Elizabeth, Fareez, Josiah, Kristin, Marcus, as well as Abby have birthdays in the fall, plus our new arrivals). Cousin Haley brought her new addition Caleb. Lots of baby-holding went on.

Sunday Abby was treated to a Princess Tea at Once Upon a Time as her birthday present from Aunt Taryn and cousins Amber and Cheyenne. And we topped that day off with what was probably the last swim of the season in Grandpa & Grandma's pool (oh my gosh was the water cold).

Sadly, our weekend wasn't without setbacks. Abby's headaches have returned--she is having them much more frequently and they are now accompanied with nausea and vomiting. We consulted with Dr. P today and decided to increase her Decadron to once a day instead of every other day in hopes of getting them under control. She made it to dance today, for which we are thankful.

We are also thankful for a growing maturity we have seen in her recently. She often relates current events in our family to Scripture that she has memorized (thanks to our church's AWANA program). This warms our hearts more than you can possibly imagine.

Though both Amy and I feel lots of pressure lately from many directions and I especially wrestle with depression much more often, we remain convinced that God does not forget us. He still answers prayers—He has answered us for each headache Abby has had recently by helping her overcome it. So we continue to pray.

And we humbly ask you to continue to pray for us. We are trying to decide if we should go visit my sister in California for Thanksgiving week--a foregone conclusion until this past Saturday when Abby's headaches returned so fiercely.

Thank you for persevering with us.

When we had Abby and Daniel's first birthday party at Bounce U the two of them agreed to give away their gifts to the pediatric oncology unit at BDMC. Abby especially felt like so many people had been so kind to her over the course of her treatment that she wanted to help those kids that were going in for chemotherapy.

So we appeared on the unit last Tuesday. We were lucky--the unit had only one bed empty (though some of the kids were overflow from the regular peds wing) and with the help of Mindi and Marsie from Child Life we were able to "play Santa" for kids from 3 to 15 years old. There isn't really anything like seeing a smile on a sick kid's face when a present appears in their room. Even if it takes their mind off their discomfort for 5 minutes, it's worth it.

Abby got to see Nurse Lesley also, as well as several of her other nurses from her many stays at this hospital.

Ms. Donalyn, the music therapist even rushed over to say (or rather shout--Ms. Donalyn doesn't do anything quietly) "Hi!!!!" and led the whole unit staff in an early chorus of "Happy Birthday" for Abby.

We had a great week...busy but filled with so many fun activities. Abby continues to amaze us with her endurance. Since the weather is cooling off we are spending lots more time outside. We all took a walk around the neighborhood and Abby kept encouraging Daniel to race her between houses. It has been a long time since she chose to do any running. We are so proud of her for trying to do things that are difficult for her.

Thank you for your continued prayers. We continue to praise God for his incredible mercy and for each day we have together.

Abby has almost completed her third cycle of Temodar. Tonight will be her last dose. We haven't noticed any significant episodes of weakness like we did in her her first two months. We are very thankful for that.

We are continuing with regular activities and are so thankful for every day we have to spend together. Abby got to celebrate her birthday along with Daniel at an indoor bouncing gym yesterday. She was so determined to try out all the activities that seemed a little "scary" to her with her limitations. At first, she was terrified, but she didn't give up and, with the help of Jesus and her dad, she conquered her fears and had a great time.

On October 1st we remembered the birthday of Abby's cousin, Kristin who went to be with Jesus in December of 2000. My thoughts were on Kristin a lot the week of her birthday and I wanted to share why. That particular week our church had us studying the following passage from Luke 15:1-10.

1 Tax collectors and other notorious sinners often came to listen to Jesus teach. 2 This made the Pharisees and teachers of religious law complain that he was associating with such despicable people even eating with them! 3 So Jesus used this illustration: 4 "If you had one hundred sheep, and one of them strayed away and was lost in the wilderness, wouldn't you leave the ninety-nine others to go and search for the lost one until you found it? 5 And then you would joyfully carry it home on your shoulders. 6 When you arrived, you would call together your friends and neighbors to rejoice with you because your lost sheep was found. 7 In the same way, heaven will be happier over one lost sinner who returns to God than over ninety-nine others who are righteous and haven't strayed away! 8 "Or suppose a woman has ten valuable silver coins and loses one. Won't she light a lamp and look in every corner of the house and sweep every nook and cranny until she finds it? 9 And when she finds it, she will call in her friends and neighbors to rejoice with her because she has found her lost coin. 10 In the same way, there is joy in the presence of God's angels when even one sinner repents."

As I was studying this passage with our kids, they were drawing pictures and acting out what the "heavenly rejoicing" might look like. It occurred to me that all those who are in heaven with Jesus and His angels are probably participating in these great parties...including our dear Kristin! What a wonderful priviledge to join all of heaven rejoicing because one of God's lost has returned to Him. Some day we will join the rejoicing and what a wonderful day that will be!

For anyone interested in hearing more about Kristin's story, please feel free to visit her website at http://kksmith.net/