Update on Cancer Kids Segment
Thanks, praises and announcement
This week we are getting ready for Christmas. We will spend some time in Tucson and Sahuarita with family and then come home. We expect it will be difficult and painful at times, but we do find joy when we contemplate Abby celebrating the birth of her Savior in His presence.
We are spending a lot of time imagining Abby in her heavenly home. I treated Daniel and Elizabeth to their favorite fast food tonight, McDonalds. As we were driving home Daniel pointed out the beautiful sunset. He said, "Mommy, the sunset is pink, Abby will like it." I agreed. Then, we wondered out loud together about whether Abby knew that we were having McDonalds (which was her favorite as well). I asked Daniel if he thought she was having McDonalds in heaven and he answered very quickly, "no, she's having something better!" Wow, better than McDonalds in a 4 year old mind is pretty good! Thank you, Lord for reminding us that what you have in store for is is even better than we could possibly imagine!
Now, I wanted to take a few minutes to update you on a boy that I asked you to pray for over a month ago. His name is Carlin and he has a PNET tumor. Well, I have been in contact with his mom and praise God things are looking pretty good. His post radiation MRI on Friday showed no new growth and a few areas looking smaller. Josiah and I were able to visit them last week and were amazed at the progress that Carlin seems to have made since his surgery in October. If you remember, he wasn't able to eat, walk or talk and now he is doing all 3! He is eating a modified diet, walking with some assistance and mom says he's communicating more clearly every day. He and Josiah enjoyed a game of Lego chess. Carlin, his parents and grandmother will leave tomorrow for his Make a Wish trip to Florida and then he starts his chemo on December 27 or 28. Please continue to pray for God's healing hand on Carlin and for strength and peace for his parents.
Finally, I wanted to let you know that the news story featuring Abby and 2 other cancer patients is scheduled to air on Christmas Eve at 10 pm. We got a sneak preview. It was beautiful and touching. So, tell anyone you know to watch or tape it on channel 5 in Phoenix.
Amy and I got up early today, spent some time with the kids, and then went off to the flower shop to deliver some things they needed for arrangements. We got to see several of the arrangements, and they are just beautiful.
Then, after a quick trip to the chiropractor (ahhh....I feel much better...) we got breakfast together and were able to spend some quiet time with God after the meal. It was very refreshing.
It is true that in hindsight, you can see the hand of God so clearly. At breakfast Amy and I were just recounting some ways He had worked in just the 2 weeks. I'm sure we will write more later about this, but God blessed us so much with the timing of all that happened. Abby's condition didn't really start to deteriorate until Thanksgiving, but in spite of much trepidation on my part, we did not cancel our trip to my sister's place in California. We spent the whole week there (as I already wrote), it was such a special time, and we have great pictures from it. Then, the following weekend, almost all of Amy's family was here, and Abby got to spend time with each one of them (foot rubs, "Girls' Club" meetings, sitting with Uncle Clyde and Aunt Nora, playing cards with almost everyone). She was very sad when most of our guests went home on Sunday. Only Uncle Gary and Amy's Mom stayed. They left late Monday afternoon. Abby had been in bed all day Monday, saying her head hurt too much to get up. Monday night Amy and I stayed all night beside her bed, and Tuesday God allowed her to stay with us until the last person that was coming to visit her arrived. What a blessing. Nothing escapes His notice.
We're doing OK today. We're immersed in the details of planning services, and are still surrounded by friends and family who are providing incredible support to us right now. Our God is so good, He knows exactly what we need and when we need it.
Amy and I both slept pretty well, especially compared to the previous night. Amy's sister Taryn was staying with us last night, so she got the kids up this morning and let Amy and I sleep. We had the rare opportunity to just lie together in our own bed after we woke up, undisturbed, processing, sharing our memories of the previous day, crying, and praying together.
We are having a graveside service in Tucson the next day, Saturday, December 10th, 2005, at East Lawn Palms Cemetery, 5801 E. Grant Rd, Tucson, AZ 85712 (520-885-6741) (map).
It will start at 10:30 AM.
We are humbly asking that in lieu of flowers, donations be given to
We look forward to seeing everyone and appreciate your continued support.
I was tempted to entitle this entry "Journey's End," but the events of the last few hours as well as my faith in God that convince me that it is most definitely a beginning. For what seemed to be an interminable time Abby sought to be free of her body that had ceased to work as it was designed. Now she can experience life in close proximity to our Father, never again to be hampered by a mortal shell.
As always, we are so thankful for your prayers.
Hospice is here
Abby is resting peacefully. Hospice is here, as are many of her friends. She is surrounded by the people she loves, and we are playing her favorite praise music in the background, which of course will pale in comparison to what she will be hearing (and participating in!) soon.
At around 8 pm she starting complaining quite a bit about her head hurting. We had been keeping her on liquid morphine doses every 2 hours faithfully all day. Finally, the hospice pharmacy delivered a pain medication patch which we put on her and then she asked for one more dose of liquid morphine which we also gave her. She seemed to be able to sleep peacefully after that.
At about 11:00 we went to her and realized that she was having a seizure. After consulting with our oncologist, we administered a dose of an antiseizure medication we keep on hand. After 20 minutes she seemed to calm down. Then, less than an hour later, she started seizing again so we repeated the dose. Again, that seemed to help for about 45 minutes. She started seizing again. So, we paged for the on-call hospice nurse to come access her port and we got her a stronger anti-seizure medication called Ativan which we have used before. That seems to have stopped the seizures.
Right now she is sleeping soundly. We don't expect for her to awaken any time soon. All the anti-seizure medications make her quite sleepy. When the doctors offices open, we will consult with them about possibly getting her Decadron dose delivered by IV if she doesn't seem to be able to take it orally.
Thank you for continuing to hold us up. God continues to be our source of strength. We know Jesus is weeping with us as well as many of you. God Bless you all!
Unfortunately Abby's condition continues to deteriorate. Her left side grows stiffer and weaker each day, and while she made it to church on Sunday (and was fairly animated after Sunday services), she has not wanted to do anything today but try to sleep. She asks for additional morphine doses often to supplement the time-release pills she takes twice a day. Her vomiting episodes have returned, and we have a call into the oncologist to see if they can help us deal with them.
We were going to start the Sulfasalazine today, but don't want to add anything that might increase her nausea.
Understandably, Amy and I are quite discouraged. We continue to spend much time in prayer. It has been said by many people that prayer changes things, that it moves the hand of God. However, we have seen that it can have a different effect--prayer sometimes (often?) changes the one who prays. God works through these prayers to change attitudes, desires, wants, and needs to be more in line with His will. Along that path lies the peace of the Holy Spirit.
While Amy and I would both say that we have experienced that peace, I would be lying if I didn't admit to also suffering the paralyzing fear that comes with caring for a terminally ill child. What of her questions? Can you sugar-coat the truth to make it go down easier? And what about our other kids? The way they voraciously devoured 4 days of attention lavished on them by extended family demonstrates that they are starving for even 10 minutes of uninterrupted time with Mom or Dad. And the big questions--what's going to happen next? How long do we have? Will she make it to Christmas? Do we want her to, or will she be far too incapacitated to enjoy it? And if so, how can the rest of us celebrate? Shocking questions, questions that are embarrassing even to think about.
So we continue to covet your prayers. We know without a doubt that God will not desert us. He promises that He will place nothing in our path that He will not also give us the strength to handle.
God willing we hope to go to the Zoo tomorrow--we will see what His plans are.
Changes and Temodar cycle
Thank you for your prayers for our trip to California last week. Our return home went quite smoothly. God was good in that He urged a rental car agent to offer to drive us directly to the airport terminal in our rental van instead of having to move us and all our luggage on and off the interterminal bus. It was an amazing blessing. When we arrived at the terminal there were a bunch of wheelchairs just waiting in the lobby. Then, when we got off the elevator, a security agent shuffled us into the middle of the very long security checkpoint line. Lastly, there were also wheelchairs waiting when we got off the jetway in Phoenix. Coincidences? We don't think so. We are confident that it was the hand of a very loving God meeting needs we never knew we had.
The week so far has been challenging. At the recommendation of our oncologist, we decided to try giving Abby 12 hour time-release morphine pills around the clock. She was a little more sleepy, but she smiled and talked much more cheerfully. We suspect she was beginning to think that the pain she was experiencing was normal and that she was in a lot more pain than she (or we) knew. The greatest challenge for us all has been the significant decrease in strength in her left side. She now needs help with most everything, including walking. Hospice has provided a wheelchair and a walker which should help a great deal. However, we are still trying to figure out how to make the walker work for her since she can't keep a grip on the left handle. Despite the weakness, we think it is amazing that she is still able to walk at all. It seems as though she has lost most the use of her lifting muscles, but she can still use her left leg to support her body weight to take a step. This is another example of God's faithfulness to us. He seems to have (for the time being) protected certain muscles to allow Abby to continue to walk.
This week Abby is on her chemo drug, Temodar. She has not experienced any nausea so far. Yesterday, despite the morphine she had on board, she complained of a pretty bad headache. We were able to give her an extra dose of liquid morphine that seems to have helped. We are praying that the headache was due to the affect of the Temodar. However, the oncologist recommended that we increase her Decadron dose from 6 mg. to 8 mg. daily. until Monday and then try to back off to 6 mg again.
Please continue to pray for wisdom as we deal with new symptoms almost daily. Just last night she mentioned that her vision in her left eye was a little blurry. Also, pray for understanding and peace for Abby's young siblings, relatives and friends. They are beginning to see her tumor's effects in a much more visible way. You can also pray for Abby to face and mourn her losses with peace. Pray that we will help her do that as it is necessary. Please also pray for emotional and physical strength for C.R. and I as we need to help Abby more. God has strengthened us over the past months and we know He will continue to provide for us everything we need.
Finally, please pray for a decision we have to make regarding a medication. We have become aware of a drug called sulfasalazine which is FDA approved and used to treat intestinal disorders like Crohn's disease. A recent study has shown it to be effective in fighting glial tumors in mice. We are able to try it with Abby if we want. She would take it at home orally. Since it is an anti-inflamatory drug, one of our oncologists thinks it may even help relieve some of Abby's pain (swollen joints due to the Decadron). However, it does have known side-effects. We need to decide if we want to try it and risk making Abby feel worse than she already does. If you have an interest in reading more about the drug, please see this article in the Birmingham News, or the abstract from the initial investigational study in the Journal of Neuroscience.
Thank you for bearing with this long post. I had a lot to tell! God bless you all.
We mentally prepared for this possiblity, intending to call the trip a success if we could simply get here and get through the week without any of the mutant-migraine headaches that can put Abby out of commission for a day or more.
In fact, though she has had a lack of headaches, her condition has declined considerably since we arrived. She is having trouble getting around (but still able to walk), hardly ever uses her left hand, and the left side of her face is getting a little droopy. I suspect we will be calling for a wheelchair tomorrow when we get to the airport.
Her curtailed ability has been the source of much frustration for her.
We've made an effort to focus on what we can be thankful for. A Savior who loves us, knows our pain and suffering, weeps when we weep. God's providential hand that never leaves us though we cannot see it. Another day with Abby, seeing her smile in spite of her condition. Loving family welcoming us with open arms, and a family of 4 welcoming the chaos of a family of 6 is no small feat!
And as Amy wrote in the last entry, we are incredibly thankful for all of you who continue to lift us up to the Father in prayer. We know God moves when His people pray. We still pray daily (at least) for miraculous healing, knowing that God could choose this avenue, or He might just love Abby so much that He wants her home with Him sooner than later. Either way, of course, she is healed.
We decided to take a quick trip to the library on Thursday morning and in the rush to get everyone out the door, we all forgot a hat for Abby. We commented that we're getting used to seeing her with hair again so we don't really think about her needing a hat!
The attached pictures will show Abby's "hair progress". The bottom picture was taken in September with one of her new baby cousins, Sienna. The other picture was taken at the end of October. She is holding her new second cousin, Caleb.
The increased dose of Decadron seems to be keeping the headaches away. Although, the daily nausea, fatigue and weakness continue to bother Abby, she still insisted on going to school today. I am told she was able to nap on a cot in the nurse's office. Praise God for giving her such persistence. I think I would have wanted to hide out feeling sorry for myself were I in her position. God is good to us.
You can pray for our upcoming week. God-willing, we will be traveling to Northern California to spend Thanksgiving with C.R.'s sister. Please pray for safe travels and no headaches or other symptoms.
May you all enjoy a wonderful Thanksgiving celebration. We are truly thankful for each of you!
Dr. Panchoosingh recommends that we leave Abby on the 6mg dose of Decadron for the week at least. At that time, we will evaluate how Abby is doing and decide if we want to try decreasing her dose.
Thank you for your prayers.
We praised God this morning when Abby's headache was gone, but she was left with some more significant weakness on her left side and spent most of the day sleeping. This evening she asked that we all read the "funnies" (comics) and play a round of Scrabble. That was a fun time together.
We now have her on 6 mg. of Decadron a day (instead of 4 or less which we were hoping for). We will see our oncologist tomorrow some time to discuss the increased dose.
Please pray that we will continue to keep our eyes on the God who holds the future and knows our trials.
Abby's Temodar cycle was fairly uneventful. We tried using a new anti-nausea drug, but it didn't work like her typical one so we went back to the Zofran and she was fine the rest of the week.
We praise God that Abby continues to be free from headaches, although the increased dose of Decadron (which is keeping the headaches away) has caused some upset stomach, an increase in a need for food, more swelling in her face and body and more frequent mood swings (what we fondly refer to as "Decadron moments"). This week we are decreasing her Decadron dose by 1/2 mg per day. We hope to wean her down another 1/2 mg next week.
Thank you for continuing to pray for us. It is such a comfort to know we are being lifted up by so many wonderful people. God Bless you all!
Desert Botanical Garden [www.dbg.org]
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!
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.
Presents for the Unit
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.
Thank you for your continued prayers. We continue to praise God for his incredible mercy and for each day we have together.
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/
The television interview was a wonderful opportunity for us to share how God has led us so faithfully through the past 18 months. The producer, Jeff Bills, wanted to know how a family deals with having a child in a situation like Abby's. We only agreed to the interview on the condition that we would be able to declare how our relationship with Christ has been our source of strength and comfort. Jeff readily agreed and gave us so many opportunities to share the many ways God has blessed us and cared for us. Please be praying that God will lead Jeff as he condenses 90 minutes of raw footage into a news story that will declare Christ to many people. We will notify you all when we find out about the air date.
Abby has more good days than bad days. She continues to amaze her oncologists with how she looks. Her left side is definitely weaker than her right side. Sometimes the numbness in her left fingers is very discouraging and frustrating to her. But, overall, she is handling it pretty well. Some days when she is tired, she has quite a limp, but we are thankful that God continues to keep her as well as she appears. After consulting with the oncologist, we decided to leave her Decadron (the drug that reduces the inflamation in her brain due to the tumor progression) dose at one pill every other day.
Abby has been Elizabeth's biggest potty training cheerleader this week. She is always ready with a treat whenever Elizabeth uses the potty and there is no end to her compliments of "big girl!" Of course, we're all rejoicing in the thought of ending our "diaper days".
Finally, I want to encourage you all to eat out Monday, September 26! Chili's Restaurant is having a great fundraiser to benefit St. Jude's Research Hospital. They are one of the leading hospitals in the nation working to find cures to pediatric cancer. It sounds like 100% of the profits go to St. Judes. See the website for a location near you. http://chilis.com/
Every morning we praise God for His mercy and goodness when we see Abby's smiling face greeting us. She has had some episodes of left side numbness and weakness, but overall she continues to feel great. She is plugging away at her schoolwork which makes her teacher very proud! Our curriculum covers American History so we spent some time watching the old Schoolhouse Rock TV shorts (some of you may be familiar with them..."I'm just a Bill, yes, I'm only a Bill, sittin' here on Capitol Hill..."). Anyway, Abby's laughter while she was watching was a joy for us.
Thank you for your prayers for our family. We feel so blessed by you all. On a sadder note, we heard the news that one of Abby's fellow patients from UMC died on Thursday. Some of you may be familiar with Haley Knutsen's story. You can read more on her web site at hopeforhaley.com Please pray for her family as they grieve their loss.
Abby, Lindsay, Jessica, Audrey, and Alex had a successful performance at Saturday's Scrub Ball put on by Positive Impact. Everybody we spoke to said they really added something to the program, which was a high compliment since they were in the company of Tommy Lasorda and our own local favorite Jineane Ford, not to mention the countless others that either were part of the entertainment portion of the program, or worked tirelessly to pull off the evening.
Abby and her friends were treated also to a night at the Buttes resort. The following morning they arose for devotionals with Amy and went swimming in the resort pool, and even got to go down the water slide in the pool complex.
Abby continues to feel well, for which we give hearty thanks and praise to God. She went to bed complaining of a little numbness in her fingers, but she is due for a Decadron dose in the morning, so hopefully that will help keep these symptoms under control.
Our week ahead is filled with homeschooling, which Amy recently started back up. Abby and Josiah continue to enjoy it, especially when combined with their once-a-week session at Eagleridge Enrichment Program
President Bush preempted their spot a bit with his speech so the interview was shortened, however, Jineane was able to encourage people to attend the Scrub Ball as well as highlight many of the silent auction items that will be available. Abby got to hold a Shih Tzu- Poo puppy (which she named "Lizzie" because she is "curious like little Elizabeth") and wear a Sapphire/Diamond pendant. Both are auction items for the ball. Pam mentioned that Abby would be dancing at the ball to represent the types of families that Positive Impact helps. Although Abby said very little, her smile hopefully won the hearts of some people and encouraged more people to attend the Ball.
After the show, C.R., Abby and Josiah got to sample some of the food from the cooking portion of the program as well as enjoy a short tour of the studio. The whole experience was very special to all of them.
Would you all be praying for God to use Abby (and her friends Alex, Audrey, Jessica and Lindsay) for His glory in their dance on Saturday? We firmly believe our involvement in the Scrub Ball has a divine purpose. Abby's website will appear in the program so more people will be able to come hear how our faithful, great and loving Savior has carried and continues to lead us in Abby's journey.
This morning we got an unexpected call from one of the Scrub Ball organizers asking if Abby would mind appearing on TV in a live promo spot for the event and Positive Impact in general. At first, Abby was a little apprehensive, but as soon as we determined that Josiah could go with her, and reminded her that this is another opportunity to possibly help draw people to Jesus, she was willing.
So in about an hour we will hop in the car and head for Channel 12 in downtown Phoenix. We are going to be guests of Positive Impact on "Arizona Midday" with Jineane Ford. It starts at 11 AM.
God-willing, Abby and a few of her special friends will have the privilege of participating in the evening program with their recital ballet dance. Abby is looking forward to the opportunity to do something to help out other kids like her.
If you would like more information, go to http://positiveimpactinc.org/
Abby, Daniel and I had our morning devotions today and we were so thrilled with this passage that we wanted to encourage you all with God's word today.
O LORD, you have examined my heart and know everything about me. You know when I sit down or stand up. You know my every thought when far away. You chart the path ahead of me and tell me where to stop and rest. Every moment you know where I am. You know what I am going to say even before I say it, LORD. You both precede and follow me. You place your hand of blessing on my head. Such knowledge is too wonderful for me, too great for me to know!
I can never escape from your spirit! I can never get away from your presence! If I go up to heaven, you are there; if I go down to the place of the dead, you are there. If I ride the wings of the morning, if I dwell by the farthest oceans, even there your hand will guide me, and your strength will support me.
Psalm 139:1-10 (New Living Translation)
We have no doubt that God has never left us and we are confident that He will keep His promises to guide and support us. We continue to feel so blessed by His goodness and faithfulness to us. Abby continues to tolerated a reduction in her Decadron dose. We are down to one tablet every other day. It is not unusual for a patient in Abby's situation to discontinue the Decadron and then need to resume it again later. Our goal is to keep her on the lowest possible dose. So, you can pray that we will be able to reduce her dose again in a week.
Thank you for your continued prayers and words of encouragement. We appreciate you all.
We left early Monday morning, August 14. The kids loved riding in Grandpa and Grandma's motorhome and in Grandpa's big truck. Abby really appreciated being able to stretch out on the couch in the motorhome as well as having her snacks nearby (the Decadron is doing a great job of increasing her appetite). We found a rental house in Carlsbad, California which was a short walk from the beach. We spent a few days on the beach as well as a day each at Disneyland, Legoland and Sea World. The rest of the time we spent hanging around the beautiful rental home.
One of the many blessings we experienced on our vacation was that Abby felt great the whole time. We started weaning her off the Decadron at the beginning of the week and she continues to handle it well. She had no headache complaints and few bouts with nausea. Her energy level was amazing. We kept asking if she needed to rest and she would just say, "I'm ok". It helped that we got a wheelchair at all of the parks we visited. Our greatest challenge was keeping up with her Decadron-induced appetite.
We were so thankful for the generosity of several people who contributed to our getaway. We dragged Grandpa Chuck, Grandma Gina and Grandpa Charlie along with us and they kept up with all the activity without a single complaint. The grandpas even endured getting drenched on the Shipwreck Rapids ride at Sea World! Aunt Taryn dug countless holes in the sand at the beach for Daniel and Elizabeth and cousins Amber and Cheyenne were a great help entertaining all the kids. A kind, Human Resources connection from my brother Rich's office provided complimentary tickets to Legoland. And, Tammy, another wonderful regular from Abby's website actually drove 90 minutes round trip to Sea World with us just so she could get us discount tickets and free parking. We also met a Disneyland cast member who offered us all priority seating for the evening parade and brought Abby a Happy UN-Birthday gift from her favorite princess, Ariel.
The best blessing by far, though was seeing the smiles on Abby's face when she found a bucketfull of seashells, built sandcastles, took Elizabeth on kiddie rides, got hugs from Josiah and giggled at Daniel's goofy grins.
This week we will see our oncologist to complete the weaning instructions of the Decadron and try to find out how long we may expect this reprieve to last. He may not be able to tell us, but we'll see. You can pray that God will continue to use us in any way possible for His kingdom purposes. We still plead with Him to show His awesome power by healing Abby and believe he certainly may choose to do so. His will be done.
Prayer Service and Looking Better
Every morning since the Decadron started Abby has shown some improvement. Today she even went swimming again at a friend's birthday party. She has a lot of trepidation about any physical activity because she is still unsteady, but on the whole the steroids seem to be working. Today for the first time since the incident she said her headache pain was a '0'.
The Decadron is, however, making her extremely tired (at least that is what we think is causing her fatigue). She's going to bed around 8, waking up around 8, and taking 1 or 2 2-hour naps during the day.
Unless she experiences a further setback, we are still planning to run to San Diego next week.
We also have a change in date for the praise and worship night. It will be this Sunday night, August 14 from 7-9 pm. Again, the location is Faith Church of the Valley at 2125 E. Chandler Blvd, Chandler AZ 85225 (SE corner of Cooper and Chandler Blvd.) Please feel free to bring the entire family.
Chemo Day 2
Praise God, we remembered to give Abby a Zofran before her chemo dose last night at bedtime and she slept the whole night without incident.
As I was praying this morning, God drew me to Luke 18, which is the story of the persistent widow. It speaks loudly to me today--I like the New Living translation version, but the parenthetical asides below are from the New American Standard for clarity.
One day Jesus told his disciples a story to illustrate their need for constant prayer and to show them that they must never give up ("not lose heart"). "There was a judge in a certain city," he said, "who was a godless man with great contempt for everyone. A widow of that city came to him repeatedly, appealing for justice against someone who had harmed her. The judge ignored her for a while, but eventually she wore him out. 'I fear neither God nor man,' he said to himself, 'but this woman is driving me crazy. I'm going to see that she gets justice, because she is wearing me out with her constant requests!'" Then the Lord said, "Learn a lesson from this evil judge. Even he rendered a just decision in the end, so don't you think God will surely give justice to his chosen people who plead with him day and night? Will he keep putting them off? ("will he delay long over them?") I tell you, he will grant justice to them quickly! But when I, the Son of Man, return, how many will I find who have faith?
Two things strike me about this passage--the first is that we should not lose heart, we should continue to pray constantly. Unlike the judge, we will not wear God out, nor exasperate him with our constant asking. That's not the point here, like many other passages in the Bible this is a contrast showing two extremes--the evil judge against a perfect God. Secondly, Jesus asks us when he returns, how many will he find that have faith? I hope and pray that our (including our kids!) experience with Abby will not be one that shatters and crushes our faith, but would strengthen and bolster our faith, that we may be found faithful at His return. Indeed, if we can point the way for others to find faith in God in all His awesome power, majesty, and infinite love, what an honor and privilege!
Any of you who have read our story over the past year know that we have innumerable examples of God's hand in our experience, from the staggering to the simple. Like every single time Abby came out of surgery (brain surgery, mind you) we would hear her doctors say "that's amazing. Most kids don't do this well." We've had doctors come to visit Abby in the hospital, and been stunned because she's not there, she was discharged. We got through a bone marrow transplant with so few complications. The list goes on. God has been present for us. God does not change. Therefore, He will continue to be there for us.
Even now we are seeing people "come out of the woodwork" so to speak, telling us we are "strong", or they can't believe our faith. I can't stress enough that we don't do this because we can, we are doing it because God is working through us, strengthening us on a day by day (sometimes minute by minute) basis. And though some may disagree, there's nothing "special" about us, God's blessings, strength, and support are there for anyone for the asking.
So here's to another day, a gift from Him, may we use it in a way that pleases Him.
Chemo day 1
Abby did get to swim this past weekend and had a wonderful time. She also stretches all the way out in her bath, smiles at me and says, "I like not having my line".
Please pray for us as we decide how to use each day. We so want to be where God wants us to be and allow Him to use us in whatever way He wishes. Abby has been amazing me with her peace. She was treated (by C.R.'s sister, Adrianne) to another manicure this past Saturday. She was chatting with her manicurist about how she had cancer and her tumors were going to keep growing until she went to be with Jesus. She also told me today that she announced the same thing to her dance class last night. God has certainly heard all our prayers asking for peace.
Speaking of prayers, we want to invite everyone who lives in the valley to a night of praise and worship next Wednesday, August 17 from 7-9 pm. It will be held at Faith Church of the Valley (2125 E. Chandler Blvd, Chandler AZ 85225). It's on the SE corner of Cooper and Chandler Blvd. We want to praise and worship God for all He has done and pray for Abby.
In our conversation one of the kids stated, "So, it's impossible to get rid of all of the tumors?" C.R.'s answer was, "It's impossible for us, but nothing is impossible with God". We want Abby and Josiah to know that we will continue to ask God to heal her.
Pray with us that both Abby and Josiah will begin to accept and process this. Ask the Lord to give us great wisdom and insight into their hearts to know how to answer their questions.
Our big surprise today, however, was that we were able to get Abby's pheresis catheter out. Dr. P had been wanting us to get it out as soon as possible, so when we were in the office today he sent us upstairs to the surgeon's offices, and a very nice lady took a look at it and said "hm, there is no cuff on this catheter. I can take it out now, she doesn't need any anesthesia to do it."
Three snips of some stitches and a little tug later, and it was out. The best part is that she only needs to keep the insertion site dry and bandaged for 24 hours, and if it looks like it is well sealed when we take the dressing off, she can swim!
Abby was most excited about this development. In her own words, "I'm cold and very happy" (medical office buildings are always cold).
We plan to talk with Abby and Josiah tonight about our plans. You can pray that God will give us the words to say and peace in all our hearts. You can also pray that God will choose to show himself in a miraculous way by healing Abby if that is His will. We are completely confident that He is able, but are willing to accept the fact that it might not be in His plan. However, we will not stop asking, right? We feel an incredible sense of peace about where we are. Our hearts are sad at times and we cry, but God continues to bless us and comfort us with His presence. He is ever-faithful!
We will keep you informed as we get new information. Thank you for your continued prayers and words of encouragement. You all lift our spirits when you take the time do do that. We so appreciate you.
Right now we most need your prayers. We spoke to Abby and Josiah tonight. We told them that there were more tumors and we are going to talk to the doctors tomorrow morning about what we might do next. C.R. also said that the good news is that Abby is feeling well right now. We didn't go into any more detail than that.
We know that God is still in control and He has a good purpose in this even though it is almost unbearable.
So when we got ready to do Abby's BMT process we decided it would be a good time to do another portrait session. The pictures turned out fantastic, and Lance gave us permission to include the attached portrait of Abby.
Home, at last
All the kids have been just ecstatic to be in their own house again.
Abby has an oncologist appointment tomorrow at 9:00 AM just to reestablish her with her "regular" doctors. We will be scheduling an MRI for as soon as possible to see where we are at. We continue to pray that she would be free from tumor progression.
Thanks again for your prayers during this part of Abby's journey. We constantly felt covered in prayers.
Eating a little
We got a call from the clinic on Friday saying that Abby didn't have to come to her appointment on Saturday. So, we have enjoyed a break since Thursday. We will go into clinic on Monday to check her labs and discuss our departure date. We hope it will be sometime this week.
Abby had a special treat yesterday. She went for a manicure with her cousin, Haley and her Aunt Shelly. We have been promising her a manicure for quite some time now. She expressed some concern earlier in the week about how much a manicure would cost and I joked with her that we could afford it because she has saved us quite a lot of money on haircuts this past year. She giggled and has passed that little joke on to a few people. I love that she can laugh about not having any hair!
Thank you for continuing to lift us up in prayer.
Also her counts are beginning to go up a little bit on their own. Her platelets went up a whole 3 points from our last clinic visit on Tuesday until today.
Abby has been asking for Chinese food for 2 days now. We've been waiting to fulfill her wish because her food cravings can change moment to moment, but she seems to have settled on it, so we are seeking out the local Pei Wei takeaway for sweet and sour chicken and white rice.
Abby is still on TPN, we are really praying her appetite will come back. She said some things yesterday that made us think that her sense of taste is returning. Her energy level is still not the best, though we did have a little family outing yesterday where she walked with us to the Rincon market (but rode on the way back).
Please also pray that she will not catch anything from the rest our kids. Josiah came home from camp with a sore throat and fever, and immediately gave it to Daniel. Nobody else has it yet, though.
All we are waiting for to be allowed to return home is for her to make her own platelets and to be eating. We know every day we stay here is because God wants us to--we are content here in Tucson with family, but it seems like every day one of our kids asks when we are going home to "the Chandler house."
As in the past, it seems like we have reached a major milestone having completed the treatment with so few complications, but in some ways it is a false sense of security. We still pray daily that the chemotherapy will have done its job. We won't know for another 2-3 weeks (when we have our next MRI) if she has had any more tumor progression. Functionally she is fine, not complaining of any symptom that could be traced to more tumor growth, so for that we praise God and are very thankful.
Thank you, thank you, thank you all for keeping us in your prayers.
She still feels nauseous and is not very interested in eating. We are told that the Malphalan will do that and to expect another few weeks before she is eating normally. We will be delivering IV nutrition for 18 hours a day on a portable pump until Abby is eating again. Abby is also taking various antibiotics, anti-viral and anti-fungal medications...just call us Oldhams pharmacy.
We will get to return to Chandler as soon as Abby is eating and she is producing her own platelets. Her platelet count today was stable so she may indeed already be recovering those. We'll see her labs tomorrow. Dr. Graham said that Abby has "very strong" bone marrow and is discharging sooner than most patients. We say Abby has a "very strong" God and many faithful prayer warriors. Praise you, Lord for answered prayers.
Neutrophil sightings and going home
This morning Abby decided to do some dancing instead of walking laps. We have a DVD with the dances from her recital so she put on her ballet shoes and started dancing. Abby, the IV pole and I even made a ring during the ballet dance and twirled around in a circle. She had a good time and smiled when she thought of her dance teacher and all her dance friends.
We are so thankful to God for His care during this portion of Abby's treatment. He has been so good to us! He has answered our prayers for protection from infections and Abby's continued good spirits.
A few counts
Abby giggled today when one of her doctors said that good behavior will make her counts go up quicker. We decided that if little sister, Elizabeth were trying to raise her counts, they might not go up quite as fast.
We see occasional smiles from Abby which brings joy to our hearts because we know it must be hard to consider smiling when she feels so awful. She smiles most when we tell her funny things that Daniel and Elizabeth say and do. She also got a very big smile when she saw pictures of her new baby cousin, Axel, who was born on June 13. She thinks he's as cute as Elizabeth :)
We pray with expectation that in a few days her counts will begin to recover. God has been so good to us and we thank Him for that. Please continue to pray that she will develop no infections while her counts are down.
Please pray for the family of Abby's next door neighbor in the hospital. Their 8 year old girl passed away this afternoon from transplant complications.
Abby's counts are still fine, although we expect them to plummet any day. However, she is still eating a fair amount so they haven't started any IV nutrition yet. We are quite pleased about that. Please praise God for that blessing and pray that she will continue to eat for as long as possible.
Today was big brother, Josiah's 9th birthday. The whole family as well as Grandpa and Grandma crowded into Abby's room for ice cream cake. Abby even ate some cake!
It's hard to believe we are 9 days into our stay in the hospital. We continue to thank you for your prayers on our behalf. We are so grateful.
Day 0, Stem Cells In
The stem cells went in without incident, however about an hour after the infusion was done Abby got nauseous and threw up. She hasn't thrown up since then, and has been sleeping most of the afternoon (probably due to the Benadryl they like to give pre-infusion). Her fever has been bouncing around from normal to about 101 degrees Fahrenheit.
Day -1, oops, a fever
Surprisingly, because most of the patients on the unit hang out in their rooms and doors stay closed, it is sometimes easy to forget how many other patients are here. Abby's next door neighbor seems to be having a particularly hard time. She is about Abby's age, and definitely needs some prayer.
Late this evening I found that Abby felt warm to me; the nurse took her temp and sure enough she is running a fever. Dr. Andreansky has already started her on Vancomycin and Cefepime, our old "friends." Cultures have been drawn to check for line infections. He says this will not interfere with her transplant tomorrow. Please pray this is a simple neutropenia fever, and not something more serious.
In a more general sense, we seem to have settled in here. We've developed a schedule that seems to be working for us and the kids are adapting. We still have our bumpy spots, but I can't even begin to list the things large and small that I am thankful to God for--things like reliable broadband at our house AND in the hospital, strangers bringing us meals, the fact that our house is so close to the hospital, and yet the neighborhood is so quiet, the desert birds nesting in the mature trees and bushes around the house (their chirping and warbling is so peaceful), and the sense of peace brought by the Holy Spirit.
Abby continued to tolerate the chemo incredibly well. She only got sick one time and we're thinking it was very likely the high levels of Dilantin in her system.
Abby has been quite a trooper so far. We thought you might enjoy a little photo journal of Abby's Day so you can see and hear about what goes on in a BMT room at UMC. The pictures to the right may appear out of order, depending on where they were in the download order. Just look at the caption to figure out which picture goes with what.
First, and most important, a princess needs plenty of beauty rest. Abby wakes up somewhere around 7-8. Breakfast trays are delivered at around 8:30 and during the Busulfan portion of her chemo, Abby had to be done eating by 9. They wanted her to avoid eating for 1 hour before and 1 hour after taking her oral Busulfan at 10. She had 4 Busulfan doses each day at the 10's and the 4's. Yes, we had to wake her up at 10 pm and 4 am to swallow 2, large capsules. But, she was great about it!
Another important part of Abby's day is mouth care. She has to swish 3 different types of mouth rinses to take care of any bacteria that might worsen the mouth sores she will develop with her neutropenia. She does this 4 times a day. She says the worst one is the one that is salty. Blah!
Abby also has to walk a mile in the unit every day. They have paced it off so that if you walk around the unit 16 times you have completed your mile. Now, what makes the walking a little more challenging is that Abby cannot leave her room until she is gowned and masked. This takes a little extra time, but it keeps her protected from unwanted germs. We decided the best way to keep Abby going with her laps would be to walk a few laps then read a bit by the fish tank. It has been a nice time together. When Abby returns to her room from her walking she has to be sure to wash her hands really well.
Another part of Abby's day right now is taking time to snack, play, write, color watch DVD's and read. She has plenty of toys of her own and borrowed ones from the playroom. Disney was quite generous in stocking the playroom when they came for the Extreme Makeover so Abby is enjoying all the new fun toys. Daniel is also quite enthralled with the giant Buzz Lightyear with wings that pop out and 6 or 7 recorded, VERY LOUD phrases. Daddy and Mommy are pleased that Buzz lives in the playroom and not at our house.
Finally, Abby is really enjoying the princess room. Her bed faces a huge mural of Cinderella among green trees and flowers with her castle in the background. It really is a special treat for Abby. Of course, we have added some of our own personal decorations like butterflies, family pictures, bible verses and Abby's homemade praise cards to remind us of all the wonderful things about God.
We have felt the impact of all of your prayers during our first week here. Thank you so much for lifting us up. We are learning the way things work here, meeting some of the other patient's families, and getting to know our wonderful nurses and staff. Please continue to pray for our lives to be an impact on those around us.
Abby has no chemo today. Tomorrow she gets a one time IV dose of the other chemo drug, Melphalan. On Monday she rests and Tuesday she gets her stem cells. Then, we just wait.
We'll continue to keep you posted.
Moved to Princess Room
You might recall us mentioning that this is one of the 6 rooms that was made-over by the Extreme Makeover team.
On a less happy note, Abby experienced a seizure this morning. This is not unexpected, the Busulfan is known to lower what they call the "seizure threshold" in patients, and Abby has a lower seizure threshold than most kids getting this treatment. Please pray that she will have no more seizures. They have increased her Dilantin dose and also have Ativan on hand to help combat this. She is on day 3 of 5 days of the Busulfan, her last dose should be at 4 PM on Friday.
We're waiting on orders from Dr. Graham to start her chemo. She is cheerful and upbeat today.
Home away from home
On Friday, we managed to fill the back of my dad's pick-up truck with everything but the kitchen sink. It's amazing how much stuff a family of 6 can gather up and still have plenty left behind!
We spent the day on Friday unpacking, organizing, shopping, and child-proofing. We think our landlady is an interior designer and she has our home beautifully decorated with things like pillows with little tassles, ceramic statues and all glass lamps. Needless to say, many of the lovely decorations are a recipe for disaster for a 2 year old. So, I am hoping I can remember how to return this to a classy vacation rental when we leave!
We had a great time celebrating Josiah and Elizabeth's birthday yesterday. Josiah chose a theme that he and Elizabeth would both enjoy....The Incredibles. You'll see our "Incredikids" in the picture to the side. The kid's cousins, Amber and Cheyenne joined in on the fun too. We enjoyed dinner with my family, followed by an adventurous round of miniature golf and a few kiddie rides. As you can see from the picture, Daniel didn't especially appreciate his choice of ride once he got on (the kiddie-coaster). We ended the evening with cake and ice cream.
Today, we are celebrating Father's Day and Elizabeth's (actual) birthday. I tried to let C.R. sleep in, but the window in our room faces east and the curtains are pretty thin. So, he was content with some quiet time and time to set up the computer in the house while I took care of the kids. We got Elizabeth a water table for her birthday. All the kids had a blast in it today. Of course, the water play turned into a water fight...a great way to enjoy the day.
We are due at UMC tomorrow morning at 8. You can begin to pray that Abby will tolerate her chemo well. She will have chemo for the first week followed by a few days rest and then her stem cells. You can also pray that our other children will be able to handle the "hospital routine" the best they can. They will spend some days with us and some days with family. Please pray for strength and patience for everyone who will be caring for them. Finally, begin praying even now that God will show us how we may be a blessing to others in the hospital and bring glory to His name.
Abby is due to admit at UMC on Monday. So, this weekend we will be celebrating Elizabeth's birthday and Father's Day (they are on the same day this year!) as well as Josiah's birthday a little early. Josiah wanted to be sure Abby was with him for his "party".
Please continue to pray that God will prepare us for what lies ahead. Pray that we will be physically, emotionally, and spiritually ready and that God will use us in any way He wants while we are in Tucson.
We will continue to post as often as we can.
The other "worrisome area" is in the thalamus. The MRI report calls it an "ill-defined area of enhancement". Dr. Sapozink believes this area is possibly radiation effect from Abby's radiation treatment. There is no way to be 100% certain if this is the case without going in surgically. Since the thalamus is an extremely sentitive area, surgery is impossible. Radiosurgery on that area is also not done due to the risks involved.
Dr. Graham in Tucson spoke to Dr. Sapozink about the results and he feels much better about continuing with the BMT. He would like to see Abby undergo a PET scan this week as well as an NMR spectroscopy (an MRI scan she has never had before). He hopes this will give us a little more information on the area in the thalamus.
So, at this point, it looks like we can possibly proceed with the BMT with a little more confidence. God willing, we are tentatively planning to arrive in Tucson on Friday the 17th and admit Abby on Monday the 20th.
Once again we are reminded how blessed we are to have so many wonderful people interceding on our behalf. We are so grateful for your prayers and words of encouragement. You all are an incredible blessing to us. God has definitely given us direction, peace and even more confidence in His ability to bring His best about for us. We are still praying that He will guide our path so that we are in the place where we can best glorify Him.
It is possible we might still do the BMT process because it uses drugs she hasn't been exposed to yet.
We are needing God's guidance, it seemed like He had caused so many things to fall into place for us and had engaged us in preparation for the BMT, it doesn't seem logical for Him to steer us in a different direction. It's also hard for us to simply say we are "done" with the chemo process because it feels a little bit like we are giving up.
On the other hand we had a conversation with Dr. Packer from DC last night and he is encouraging us to seek a Phase I or II trial testing "biologic therapies." These therapies utilize new drugs that target tumor growth factors and/or other factors that can help the body recognize that the tumor is foreign.
Generally a Phase I trial is "hm, this looks interesting, let's try it and see what happens." It tests efficacy of a treatment, whether a patient can tolerate the drugs at all, toxicity levels, etc. A Phase II trial is "wow, we tried this, and some of our patients did 'better' after the treatment."
But the thing we need prayer for most is deciding whether or not to go to Tucson for the BMT process. After we decide, we would be able to pursue the other avenues if that seems like the direction we should take. We deeply desire to be where the Lord wants us to be. So, please pray for His leading in making our decision.
We'll continue to post new information as we receive it.
Dr. Graham is willing to continue with the transplant, but is definitely concerned about the MRI results. He would like to see some other type of treatment along with the transplant such as more radiosurgery. We did speak to Dr. Shafron and he does not recommend traditional surgery at this point.
Please pray for wisdom as we process this new information and make decisions about what to do next. We know that God will lead us along the path that is His will for us. His ways are much greater than we could ever imagine and He has proven Himself incredibly faithful to us throughout our journey.
Recital, donating blood and Mail
For those of you who live in the Valley, our church is hosting a blood drive. Please consider donating on Sunday, June 19 (or at your local donation center). See http://faithchurchaz.org/index.php for more information.
Finally, we will be leaving for Tucson on Monday, June 13. We will be able to get mail at the following address: The Oldhams c/o The Wiersmas P.O. Box 65506 Tucson, AZ 85728-5506.
We do not yet have MRI results from yesterday. We'll post as soon as we have some.
You can pray that God will use this break to prepare us physically, spiritually and emotionally for what lies ahead. We may not know what we will face but we know who is in control and that is our greatest comfort. Also, praise God with us that the vacation rental we looked at today in Tucson will be perfect for us. He continues to take such good care of us.
More stem cells
They are also going to do some initial evaluation tests (EKG, chest X-Ray, etc).
We also hope to take a look at the property we will be staying in during Abby's treatment.
God Bless you for your faithful, fervent prayers! Her ANC (absolute neutrophil count) is 100 today compared to 30 yesterday and 8 the day before. We're moving up! Keep praying that we will see no infections while she is still neutropenic and that those counts will keep climbing up. Also, pray for all the details to work out for our departure tomorrow.
Right now we're praying that her body will start to recover. Her counts are at zero. We are told that as soon as her counts start to rise, the mucocitis (mouth and throat sores) will start to heal and she'll feel lots better.
On a lighter note, we're in the "hair collecting" stage again. Abby realized her hair was starting to fall out yesterday and requested a baggie to hold it. She was sad, but said, "at least now I don't have to wash it".
She hasn't had a fever since this morning, and there is still no sign of infection. We do not have a release day yet.
So far, there is no sign of any infection, praise God. Keep praying it stays that way!
You can praise God with us that her fever developed during the day which saved us from a visit to the ER. You can also praise God that the new oncology unit here is so quiet and peaceful. We will certainly get some good rest.
Here we go
Abby is now neutropenic and experiencing some pretty nasty mouth and throat sores. This is a new and unpleasant symptom, but she seems to be handling it as well as possible. She couldn't eat anything this morning, and swallowing her medications was quite painful. We will be stocking up on popsicles for a while now.
Tomorrow we are due to take her in for a platelet transfusion. Next Monday we will begin injecting neupogen into her line. Praise God she doesn't have to give herself the shots anymore! Then we will just monitor her counts and see when she recovers.
We have our weekend free and she'll go to Tucson Monday for her stem cells. You can pray that she will not have a need for any red cell or platelet transfusions before Monday. The only way we can give her a transfusion here is to admit her to the hospital.
Thanks again for covering us during this part of Abby's treatment.
Giggles and Good News
Yesterday and last night were great for Abby. In the afternoon, she was energized by a visit from her friend, Lindsay. They invited 2 other patients into her room for a very noisy and giggle-filled play time of Barbies. Daniel also came to the hospital with me and gave Abby her dose of giggles and grins for the morning. She was so glad to tell him all about the Spider Man and Rescue Heroes car awaiting him in the playroom. It always amazes me how Abby is able to think of anyone but herself when she is enduring her treatment. Isn't it beautiful how having a relationship with Christ allows even a 6 year old to look beyond her current trials? Now, Abby IS also human. She does have her selfish moments, just like the rest of us, but it brings us great joy to see Christ doing His work in her just like the rest of us.
Many people have asked how much Abby knows about her situation. C.R. and I have always intended to allow Abby to ask questions as she felt comfortable. We often ask her if there is anything she wants to ask or if she is worried about anything. Abby knows that her cancer is very aggressive and that people can die from cancer. In fact, she asked me a few weeks ago if she would be homesick in heaven or if she would miss people. It is quite clear that she understands much more than I would have expected. However, she also has an incredible peace about her future. We may not know what our earthly future holds, but we do know that ultimately we will be in heaven worshipping around the throne of Jesus because we have made Him Lord of our lives. Abby had the opportunity to write in the chapel journal at Give Kids the World when we took our wish trip. I told her that she could write anything she wanted to for the staff, volunteers and other wish families who may read it. She decided to write John 3:16. For God so loved the world that he gave his only Son, so that everyone who believes in him will not perish but have eternal life. What a wonderful promise we have for a future free from cancer and all the other ugliness of this world!
As always, thank you for your faithful prayers.
Despite the fact that she was so sick all night last night, her spirits remained surprisingly peaceful. She reminded herself often that her angels were with her and once she said they were singing praise songs :) Thank you for your prayers. God is ever faithful.
Day 0, Cytoxan done
Thank you all for praying.
Line placed, waiting for chemo
The new unit at BDMC is beautiful. It is so pleasant--lots of light, large rooms, (almost) real beds for parents to sleep in, showers in the bathrooms.
Please, please pray that the chemo will be effective and that she will tolerate it at least as well as she did last time. We'll keep everyone posted.
I had a first today--they actually let me back in the OR when Abby went to sleep. She did great for the anesthetic.
And before we knew it, Dr. Janik was coming to get us. She needed a little Demerol post surgery but it immediately improved her disposition.. The new line is not in the middle of her chest like before, its off to the right side, and she is very happy with that.
We're just waiting for her to be released from recovery and we will be heading down to the new oncology unit.
Spinal Tap Clear
We also have some more details regarding her next phase of treatment. We have a week off; next Monday she will go to Banner Desert to have a phoresis catheter put in, and also to start her chemotherapy, which will primarily consist of 4 days of cytoxan and topotican. The cytoxan will be delivered at higher doses than before. Then, unlike before, we will wait through the weekend and go to Tucson the following Monday to get her stem cells infused. This is because the topotican has to be out of her system completely before she can get her cells back.
We've also heard back on the pathology from Lucy Roarke at Children's Hospital of Philadelphia. She is sticking by her diagnosis of an anaplastic astrocytoma. You might recall that this is a very different tumor from a PNET, and the first time we had her look at it she said the same thing. We're going to get another opinion from a well-respected pathologist at St. Joseph's here in Phoenix. Either way, it doesn't change our treatment plan, according to Dr. Graham. It still would be nice to get some kind of consensus on the pathology.
So we have a week of peace, to some extent. Please pray she will tolerate the new chemotherapy at least as well as she did last time around. And pray for Abby's brothers and sister--they are figuring out that we are really starting this all over again.
We haven't heard an official report yet from anyone. We'll write more after we get debriefed.
She's under observation for about an hour, and then she gets a short ambulance ride to Phoenix Children's, where she gets to spend the night.
Stereotactic Radiosurgery today
We were met by Dr. Loomis, one of Abby's favorite anesthesiologists. He accessed her port, and she pushed her sleepy medicine just like always.
The Stereotactic Radiosurgery process needs an MRI and a CT scan, then the two images are electronically fused together and used to create a treatment plan. A rigid frame is also attached to her head during this time to provide a fixed point of reference for the delivery of the radiation.
The planning process takes 2 to 3 hours. Abby's done with all the scanning right now, but she will still be sleeping throughout. We're just waiting for them to come and tell us the planning process is done, and then we will move down to radiation oncology.
Abby's and Daniel's reminders
When Abby's MRI scan was clear in January he didn't quite understand that we could change our prayers from "make Abby's cancer go away" to "please keep Abby's cancer away". However, after a month of reminders from Josiah and Abby, he seemed to realize that God had, indeed, cured Abby. This morning he asked why Josiah was praying for Abby's cancer to go away. "God maked it go away, right?" he questioned me. Abby then responded, "Yes, He did, but then He allowed it to come back so we could share more about Jesus at the hospitals". I told Daniel that we could pray again that Abby's cancer would go away. He put down his breakfast food and said, "I will pray that right now". And he did.
May I always remember that nothing we are experiencing is beyond God's power. And, He is always ready to listen to our prayers. So often I think to myself, "I will pray for that tomorrow morning." May I be in constant communication with Jesus. He delights in our relationship!
Schedule for stereotactic radiosurgery
We have to check in at Banner Good Samaritan on Monday at 5:30 am. Dr. Sapozink anticipates being done by 2 pm. Again, their plan is to perform radiosurgery on the two areas that appear to be recurrent tumor which were too deep to remove with traditional surgery. They will also radiate any area(s) of concern that appear on her MRI that day. After Abby has recovered from the anesthesia, they will transport her via ambulance to Phoenix Children's Hospital where she will stay the night for observation. She is looking forward to the ambulance ride, but her brothers are going to be quite jealous as this will be her 6th ambulance ride :)
Thanks to those of you who have been praying for scheduling issues to be resolved quickly so Abby's treatment isn't delayed. There are so many people involved in her care that scheduling can be a nightmare, but things are proceeding smoothly.
Please pray for our doctors, Dr. Sapozink and Dr. Shafron as they carry out the radiosurgery on Monday. You can also pray for a clean spinal tap which they will perform while Abby is asleep. One of the areas they are going to radiate is near a ventricle. Basically, that means that if it moves much further, it will invade the spinal fluid and can travel to other areas besides the brain. The spinal tap will show that Abby's spine is still clear.
I spoke with Dr. Graham in Tucson and he is still leaning strongly toward 2 rounds of chemo, but isn't sure whether or not we will be able to have the first round here at Banner. We should know by the end of the week. It sounds like her first round of chemo will begin on Monday, May 9 or Tuesday, May 10.
This passage from 2 Corinthians 1: 3-4 (New Living Translation) encouraged me this week.
All praise to the God and Father of our Lord Jesus Christ. He is the source of every mercy and the God who comforts us. He comforts us in all our troubles so that we can comfort others. When others are troubled, we will be able to give them the same comfort God has given us.
Would you all please pray for us to be an encouragement to others as we travel this road. I so often meet other families and wonder if they have the same hope and peace that we are blessed with. I still shed many tears and struggle with worrying about the future, but God has given me so many moments of comfort, peace and joy and I want others facing trials to share in that comfort.
Thank you again for your faithful and fervent prayers!
MRI and Stereotactic Radiosurgery
Unfortunately the MRI confirms that there are two more areas of suspected recurrence that were deeper than Dr. Shafron wanted to go.
We are going to try to obliterate these areas with stereotactic radiosurgery, which does not require an actual incision, but works by focusing several weak beams of radiation on a central spot. Then we will followup with either 2 or 3 more rounds of chemotherapy like we discussed before.
Please pray that we can get everything scheduled for the SR posthaste. Dr. Graham is worried that we will end up delaying treatment like we did before. There are a lot of little "parts" to the SR procedure that need to come together.
Through all the stress, pain, frustration, and panic God remains. He has been like a blanket over us, covering us and "lifting our heads" when there seems to be no hope. We of course have no idea why he wants us to walk this path, there are certainly many reasons, but we like to think God's glory has been demonstrated in Abby and ourselves.
For those of you in the valley, Abby will be representing Make-a-Wish at the Cold Stone location at 2960 S. Alma School Suite 3 in Chandler. It is on the NW corner of Alma School and Queen Creek. Maybe we'll see you there!
(these are both "before" and "after"--see if you can tell which is which!)
Our tenative plan now is to first explore if stereotactic radiosurgery is really warranted--that means having another MRI, and maybe a second PET scan. This will happen in the next few days. It would be ideal to do the SR prior to starting chemo, but if we can't pull things together, we could do it in-between chemo cycles.
Secondly, Abby will have three more cycles of chemotherapy followed by infusion of her stem cells. We have cells left over from her previous collection. This is the actual "bone marrow transplant" process--these cycles will kill off all her bone marrow and the stem cells will recover it. The cycles will consist of different drugs at higher doses than she had first time around, so her recovery time will be longer from each.
The first two cycles will be similar to what we had before, just with different drugs. We hope to do this at BDMC--both Dr. Graham and Dr. Abella have said that they would work to this end to minimize the amount of time we have to be traveling. Like before she will be inpatient for 4 days each cycle, then we go to Tucson for her stem cell infusion, then we watch her for the next 10-14 days while she recovers from being neutropenic, and it is likely she will need units of packed red cells and/or platelets.
The last cycle will consist of busulfan and melphalan at very high doses. For this cycle, Abby will be inpatient at UMC for about a month. Dr. Graham made no secret of the fact that this cycle would be unpleasant.
After a quick exam, we were back in the car to run to Amy's parents' to eat dinner and pick up Elizabeth, and then we were on the road and home by 7:30. Whew.
We're going to try to start the treatment as soon as possible, so please pray that we can get all the red tape out of the way. Please also pray that we can get some definitive direction regarding the SR radiation therapy, we have conflicting information now.
On a happier note, we were able to remove Abby's incision dressing this evening. Dr. Shafron had said it needed to come off on Wednesday, but we had no idea where we would be today, so he had Dr. Ha give me a set of skin staple removers and a quick lesson in surgery. (I'm exaggerating, obviously) Abby was very nervous (she had poor experiences with the removal of staples from surgery #2), but I had her scrub up and put gloves on so she could help by taking the staples from me when I was done. She laid her head on my lap and all 6 staples came out with absolutely no problem except the last--it was a little stubborn, and made her cry, but she quickly got over it when she realized we were done. The dressing itself came off without sticking too badly; Abby reveled in being able to scratch all the little tiny itches on the perimeter of the site where her hair is already growing back after the surgery.
If Abby is available, she will be representing Make-A-Wish at one of the Cold Stone locations here in Chandler.
Abby is feeling great. She felt well enough to go to her dance class tonight much to everyone's surprise. It is good for her to get back into a normal routine somewhat. She is already asking if she can go to her homeschool enrichment program on Friday.
Pray for a safe trip for the day on Wednesday and that C.R. and I will ask all the necessary questions. Please also pray for the dealings with the insurance company. They have already assigned us a case manager so we are encouraged that they will be as cooperative as before.
In Her Own Bed
The whole family (including Grandpa and Grandma and Shelly and Haley) came for playground time and lunch. She was overjoyed to see everyone, and by the end of lunch she was worn out. She's napping now.
I also talked to Dr. Graham today and he is setting in motion the things that will need to happen for our consult with him next week. Please pray for us as we weigh the risks and benefits. Steve and Amy reminded us that we still have a *choice* about this. From reading the abstract of Dr. Graham's study on treating recurrent brain tumors with bone marrow transplants, it appears that the event-free survival rate is somewhat encouraging. That study is 7 years old, so Dr. Graham has had lots of experience since then. We will see what he has to say next week.
She is now completely off the IV fluids, and is taking all her meds oral except for her antibiotic, which is being administered through her port with a portable IV pump much like the ones we have used in the past to do IV meds at home.
She also had a quick MRI today just to check for abnormalities post-surgery (bleeding, post-operative shifting, etc), and it looks good.
Dr. Shafron was off this weekend (originally to attend a meeting in New Orleans, cancelled it because he didn't really want to go, and promptly got sick himself), but left us in the capable hands of Dr. Ha (yes, that really is his name) a very kind young neurosurgeon who is now working in Dr. Shafron's practice.
Amy and I were also blessed in many ways today, not the least of which were 1) Abby declared Aunt Shelly could stay with her tonight, so we got to come home together and are spared the tag-team thing for a little while, and 2) Steve and Amy Glover came to visit us at our request on very short notice. We spent a solid two hours or so just processing together, as Amy and I begin to try to grasp what we are getting into with respect to the bone marrow transplant process. What a gift from God they are to us.
I guess there is a small (very tiny) chance that Abby will come home tomorrow. Monday is a more likely day depending on how tomorrow goes.
Before I left, she did ask if we had results about the tumor. We told her that what Dr. Shafron removed was tumor and that we would be talking about what kind of treatment we would need to do next. She looked disappointed, but said simply, "The chemo makes me sick." And then turned back to her popsicle. Lord, help me learn to accept the disappointments of life with that kind of acceptance.
Praise the Lord for allowing everything to work out so smoothly today. And, praise the Lord for answering our prayers about being at a new hospital. We felt very well cared for today even though we miss our friends at Banner. We learned that one of the Child Life interns from Banner who knows Abby is now the weekend Child Life specialist at Phoenix Children's. Abby will enjoy seeing a familiar face tomorrow.
Thanks for your faithful prayers!
She has 3 IV sites, one in her neck, and one in each arm. The right arm is an arterial IV, through which they are measuring her blood pressure.
She is eating ice chips right now. In another 15 minutes, if her stomach is still settled, she can have water, then we will move on to popsicles and juice.
As of now, we're just waiting for them to finish the cleanup from surgery and then we can go in to see her.
Whoops! False start
Off to Sleep
God is good
Psalm 103 (New Living Translation)
Praise the LORD, I tell myself; with my whole heart, I will praise his holy name. Praise the LORD, I tell myself, and never forget the good things he does for me. He forgives all my sins and heals all my diseases. He ransoms me from death and surrounds me with love and tender mercies. He fills my life with good things. My youth is renewed like the eagle's!
The LORD gives righteousness and justice to all who are treated unfairly. He revealed his character to Moses and his deeds to the people of Israel. The LORD is merciful and gracious; he is slow to get angry and full of unfailing love. He will not constantly accuse us, nor remain angry forever. He has not punished us for all our sins, nor does he deal with us as we deserve. For his unfailing love toward those who fear him is as great as the height of the heavens above the earth. He has removed our rebellious acts as far away from us as the east is from the west. The LORD is like a father to his children, tender and compassionate to those who fear him. For he understands how weak we are; he knows we are only dust. Our days on earth are like grass; like wildflowers, we bloom and die. The wind blows, and we are gone – as though we had never been here. But the love of the LORD remains forever with those who fear him. His salvation extends to the children's children of those who are faithful to his covenant, of those who obey his commandments!
The LORD has made the heavens his throne; from there he rules over everything. Praise the LORD, you angels of his, you mighty creatures who carry out his plans, listening for each of his commands. Yes, praise the LORD, you armies of angels who serve him and do his will! Praise the LORD, everything he has created, everywhere in his kingdom. As for me – I, too, will praise the LORD.
GOD IS GOOD! He has been so faithful and He hasn't ever left us. Honestly, I don't feel ready to walk this road again, but we take great comfort in knowing that He promises to be here with us.
This morning we will take the kids out to the zoo and this afternoon we will take Abby to Phoenix Children's Hospital to have some labwork done and to tour their PICU. Please pray for C.R. and I to know when to advocate for Abby and when to abide by the policies of the hospital. I feel a little anxious about learning how they do things at a new hospital. Pray even now for ways we all can show the love of Christ to everyone we encounter at the hospital.
Please also pray for all our children to be at peace. Daniel is much more aware of the seriousness of the situation than he was last year. He is pulling out all his best smiles and charms trying desperately to make everyone happy :) Elizabeth is hanging on to me more than usual-she knows something is happening. And, Josiah is worried and learning to take his concerns to the Lord. It's beautiful to see.
Pray for our families who will be caring for the children while we are at the hospital. They have the hardest job...I know...I do it every day :)
Thank you, thank you, and thank you. We can't say it enough...you all are such an encouragement to us. We so appreciate your prayers on our behalf, your words of encouragement and offers of help.
God Bless you all!
We have a plan
The general consensus is that what we see on the MRI and PET scans is probably recurrent tumor. There is still a chance that it is radiation necrosis, but at this point the only way to be sure is to do surgery. If Dr. Shafron discovers it is not tumor then we know for sure. If it is tumor, it needs to come out anyway.
The surprise came from Dr. Abella, who said there is still a possiblity that we can get rid of the cancer if we do a full bone marrow transplant. Her chemotherapy previously did not kill off all of her bone marrow. It would be an autologous transplant, because we have enough of her own stem cells left from her previous treatments.
There's a lot more to write about all the possible transplant details--as those become clear in the next few days we will keep you posted.
So as of right now she is scheduled for surgery on Friday at 9:00 AM. It will be at Phoenix Children's Hospital. That's a new wrinkle, due to scheduling issues. If we did it at BDMC we would have to wait at least a week, and we didn't want to wait.
So there's lots to pray for--pray her surgery will go at least as well as it has gone in the past. PLEASE pray we will discover that this is just radiation necrosis, and not new tumor growth. Pray for all the little details (being at a different facility, insurance company issues, me juggling work again, etc.) And pray for our other kids. Josiah knows the whole story, and Daniel and Elizabeth have caught on that something is wrong. They need God's peace as much as the rest of us.
He is hoping that he can get a different radiologist to look at the PET tomorrow, comparing it side-by-side with the MRI, and also looking at it himself.
Our goal right now is to get that second read on the PET, and also get Dr. Shafron, our oncologist (Dr. Abella), and possibly our radiation oncologist Dr. Sapozink all together for a meeting on Wednesday so we can decide what to do next. Our options appear to be: 1) Do nothing, because the enhanced area is due to the radiation therapy and is not tumor, 2) Undergo a third surgery, because the enhancing area is adjacent to the original tumor bed, and thus is operable (but with the same risks we had before), 3) Undergo another round of chemotherapy, or 4) some combination of 2 and 3. We are unsure right now if another course of radiation therapy is an option.
Like we have written before, we still ask God "why?"--we don't know what His purpose or intent might be. We can only trust that Scripture has not changed, and that what it told us yesterday is the same as what it says today. That promise is clear, He is the same yesterday, today, and tomorrow. His plan for us remains perfect.
But that doesn't mean it doesn't hurt sometimes.
PET Scan Next
The best way at this point to know what's up is to have a PET scan. Abby had one before, just before her second surgery to help us tell if she really needed the second surgery. If the PET scan shows that those areas are NOT metabolically active then it's nothing to worry about. So that's how we are going to pray.
Abby still feels great, has plenty of energy and is cheerful. Thanks so much for praying!
The second event of our weekend was having to bring Abby to the hospital ER. On Saturday morning, our family attended Josiah's flag football game and went out to lunch afterwards. At the restaurant, she claimed she felt dizzy, had a headache and felt sick to her stomach. She basically lost her whole lunch and continued to vomit on our way home. The thing that concerned us most was that her reactions became almost slow motion and she got a "glazed" look in her eyes. She responded to our questions, but everything took a great deal of time. We called our oncologist who said we needed to bring her in. We spent almost 12 hours in the ER. She had labwork, a CT scan and they gave her fluids with an anti-nausea medication. Neither the labs nor the CT showed anything alarming (preliminarily)...praise God. They need to get her archived CT scans to compare them this week.
Today she is pretty normal, with good appetite, plenty of energy, and cheery smiles. She had a mild headache that dissipated by the end of the day. At the suggestion of the ER physican we're starting her back on the Keppra. Tomorrow we will navigate the medical maze, trying to figure out which of her many doctors we need to consult with next.
Last night we colored Easter eggs (see picture at right). Abby's hair is coming in nicely now, though it is *very* dark! She doesn't seem to mind all the people that seem to want to touch it; she has been very gracious.
One less medication
Thanks for praying!
The procedure went well. Abby was anxious about the test despite our reassurances that it would be painless. She vaguely remembered another EEG she had during her first stay in the hospital and she didn't appreciate the cleanser they had to rub on her scalp before placing the electrodes. I tried to remind her that at that point she had one thing she has much less of now...hair! That eased her mind a bit, but she was still concerned it was going to hurt.
When she got on the bed, she started to get worked up and then just closed her eyes. I asked her if she was ready to take her nap and she gave me her little smile and said, "I'm praying". She handled the placement of the electrodes extremely peacefully. The rest of the procedure was relatively uneventful. She got to sleep a whole 20 minutes (barely beginning to make up for the 4 hours we deprived her of). In all, it was one of our easiest appointments.
Abby saw the oncologist yesterday to have her port accessed and her labs checked. Praise God, her lymphocyte count is recovering beautifully. She has also gained a pound.
Her next MRI will be in mid-April. You can pray that there will be another clear scan. She has expressed a slight interest in trying her MRI without anesthesia. Please pray for wisdom for us to decide if that is realistic for her.
We'll post more information about the EEG as soon as we have results.
This test is to help determine if she can stop taking the anticonvulsant drug Keppra--she's been on it almost from the beginning, first to control the original seizures (of which she has only had 3 total), and then as a preventative post-surgery, since any brain surgery can disturb the brain enough to make it seize.
Keppra is a well-tolerated drug, especially for young patients like Abby, but over the past few months our doctors have asked us often when we are going to get her off of it.
Thanks again for your prayers!
Also, as I did in the last entry, I'm only attaching a few photos here, but all the photos I uploaded are in the album starting here.
We're safely home now, the remainder of our vacation is almost a blur, but we had a fantastic time. We spent days at Sea World, Disney-MGM Studios, Epcot, and the Kennedy Space Center, as well as lots more time at the Magic Kingdom.
At Sea World, Elizabeth loved the penguins and puffins and Daniel was terrified of the sharks. We also had the best dolphin feeding session we've ever experienced.
The highlight of our time at MGM was a tossup--it was great to meet Mr. and Mrs. Incredible, but they also run 10 minute "animator" sessions where an artist shows you how to draw one of the basic Disney characters. Abby and Josiah really enjoyed that and even asked to go back and do it again. (Hm. Josiah would probably argue with me--he really LOVED Star Tours).
Epcot is where we had our Princess Breakfast at Restaurant Akershus in the Norway Pavilion. We met Mary Poppins, Aurora (Sleeping Beauty), Mulan, Belle, and Jasmine.
On Saturday (2/19) we moved from the Village (http://www.gktw.org) to a cabin at Fort Wilderness. We really recommend the cabins there, they are spacious and laid out in such a way that the space is very usable. They have a near-full kitchen, and the housekeeping service even does your dishes!
My dad also flew out to join us that day, I picked him up at the airport and took him to the Village where we were already checked out, but were invited to play on site until our Fort Wilderness accomodations were ready. The Village has one of the coolest minigolf courses we've ever played on, it's a 9 hole course done in a dinosaur theme. Every hole has a sensor in it, and when your ball goes in the hole, something on the putting green does something--a dinosaur pops up from behind the bushes, something growls at you, or some such. It was a hoot.
Epcot definitely became our second-favorite park--we spent the most time there next to the Magic Kingdom. We even got Josiah and Abby onto "Mission: Space" (3 times!), which is hands-down the best simulator I've ever been in. You really feel like you are being shot into space on a trip to Mars.
The night Dad came in we had dinner at Fort Wilderness at the Hoop-de-Doo Revue. The players were fantastic, it was a very funny show. We were quite surprised when they came down off the stage and invited Josiah and my Dad to participate in the show. Josiah became "Six Bits Slocum, Fearless Bearfighter", and Dad was Davey Crockett's angel (that was, umm, comical to say the least).
Epcot's Illuminations show has been greatly enhanced since Amy and I were at WDW 10 years ago. The kids loved it, all except Elizabeth, who slept through the whole thing, how she did it I know not.
Our other unexpected surprise was that Abby became our first (and probably only) child to lose one of her teeth on the Monorail at Walt Disney World. She was so proud. The Tooth Fairy even found her all the way out in Florida, though it took a couple of nights for her to remember to put the tooth under her pillow.
Our flight home was as uneventful as the trip to Orlando. The kids enjoyed the added treat of an extra landing and takeoff as our plane stopped over briefly in San Antonio before taking us home to Phoenix. One of our wish granters met us at the airport to help collect our luggage and get us to the curb to meet our limousine.
Now we're back into our regular routine, however, a day hasn't gone by when one of the kids doesn't mention something about our trip. We will be remembering this trip with fondness for a very long time.
On Monday we started at the Magic Kingdom. Amy and I were awash in memories of our previous visits to Disneyland/Disneyworld when we entered the park. To get things off to a good start (and to reassure Daniel that we really do listen to his voice above the din of his three other siblings—he is a train fanatic) we decided to immediately survey the park by riding the Disney Railroad starting at Main Street. The kids eyes were wide as saucers as they began to comprehend the scale of the Disney Empire here in Florida.
I’m taking lots of video, and surely will be editing with iMovie for a week solid when we get back. I've uploaded other pictures too, you can see them starting with this photo album page.
We ran into Goofy on the way over to Liberty Square, got his autograph and a snapshot of Abby and Josiah with him. Somehow we got turned around and decided to go back towards Fantasyland to ride the Teacups. We were trying to pick things that all of us could do—not an easy feat, and soon our options were somewhat exhausted. We worked our way over into Tomorrowland, Elizabeth fell asleep for her afternoon nap, then we came back to Fantasyland for a ride on Dumbo. We spied Tweedle-Dee and Tweedle-Dum, and at this point we had a taste of the amazing things that sometimes happen to kids at the Magic Kingdom. “The Tweedles” (as their handler called them) were quite taken with Abby, just about falling over themselves in mock competition for her attention. We got some great video and photos of the whole incident. At the close of our impromptu visit, the handler (a cast member named Susie from Yorba Linda, California) started asking us some specific questions about which of the other characters we had met. At this time we had really only run into Goofy and the Tweedles. We offhandledly mentioned that we had planned on seeing Ariel, the Princesses, and maybe Mickey and Minnie, but we weren’t sure what the best time was for us to do that. “Well…let’s go right now!” she said. We kind of stared at her, not really understanding what she was telling us, and then off she whisked us on a whirlwind meet-and-greet tour. She took us in every back door, shuttled Abby to the head of every line, very discreetly I might add, Disney has many of the queue areas setup so it is easy for the cast members to bring in “VIPs” without trouble.
The best part of the tour of course was Abby’s visit to Ariel’s Grotto. Susie gave her a few minutes to put on the Ariel costume that one of my co-workers (David Bitter) had given to her as a gift, and we were ushered into the Grotto. Ariel was very kind and gracious hostess, asking Abby lots of questions and engaging her in conversation for a good 10 minutes or so, and then we were off again—all told we saw Mickey, Minnie, Donald, Goofy (again), Cinderella, Snow White (who had a voice just like the movie—it was creepy), Aurora (Sleeping Beauty), Pooh, Eeyore, Tigger (whom Daniel was so excited to see he was almost vibrating), and Belle. All of them were just great—everything you would hope for your kids in an opportunity to meet their “movie stars.”
And then, as suddenly as she appeared, our cast member Susie took her leave and vanished. We didn’t even really get to thank her properly.
The rest of our day was filled with rides and shows. Amy and I did the kid swap most of the afternoon so the older kids could ride the faster rides. It culminated in a storybook (well...mostly) ending with the SpectroMagic parade. I say “mostly” only because Elizabeth was at her limit in terms of exhaustion, but the parade did hold her attention for the most part.
We arrived home at Give Kids the World at about 10:30 PM. All things considered the kids did great. They were asleep almost before their heads hit the pillows.
Tuesday was our first day at Animal Kingdom, and we started with the Lion King show. We had been warned not to miss it, and it was indeed a fantastic show.
We got really lucky and the kids got to sit in the front row in the theater. About three quarters of the way in, some actors approached Abby, Josiah, and some other kids in the front row and brought them into the performance with noisemakers, taught them a little dance, and led them through a processional as part of the story. We were so proud of them, Abby didn't show a moment of shyness, and she considered it the highlight of her day.
We didn’t try to do all of AK, we were obviously very tired from our previous day at MK, so we wrapped up about 5:00 PM and headed back to GKTW.
I will write more about our experiences at GKTW as well--they almost deserve a separate post--but it will have to wait until next time.
Orlando, here we are, not too much worse for wear.
After almost two solid days of packing (Amy’s bailiwick, not mine, she is far better at it than me) we actually found ourselves in bed at about 10 PM last night. We had said to ourselves that we didn’t want to start this vacation exhausted, and though we are tired, we did get a good night’s sleep.
Sunday morning dawned clear and cool after nearly three days of rain in the Valley. Surprisingly, all the kids awakened in good cheer, we had everyone dressed and ready to go by the promised shuttle arrival time. At least, we thought it was a shuttle, we had kept asking our Wish Granters for information about our transportation to the airport, all they would say was “oh, it’s a shuttle service that Make a Wish uses.”
Imagine Abby’s surprise when we opened the front door to a white vehicle that just didn’t seem to have an end to it! They had sent a limo to pick us up, complete with a tuxedoed driver who was most polite.
So began our adventure. Our Wish Granters met us at the airport, helped us with luggage, and stood by while we discovered that for some reason Southwest had Daniel’s name wrong on the itinerary. Sad commentary on the state of affairs here in the US—as passenger manifests are official documents subject to scrutiny by the FAA now, we had to correct it. In pre 9/11 days nobody would have cared—it’s not like we had ID for Daniel anyway. Southwest took care of it (after the poor ticket agent was on the phone with someone for a good 15 or 20 minutes), and we were soon at the gate after negotiating the zoo that is the modern security checkpoint.
Let me just say that the best part of traveling with small kids is PRE-BOARDING. We had everyone on board with boredom-reducing activities in hand before the flood of the remaining passengers on our very full flight.
All the kids did fantastic on the 4 hour flight, even Elizabeth, who started out a little crabby, but even took a 45 minute nap near the end.
A Give Kids the World volunteer met us at the Orlando airport, and even brought her two girls. Again, very sweet people who helped us with our luggage and filled us in on other fun things we might like to see while we are here. Unfortunately, we did arrive at Orlando short one of our pieces of luggage. As of 8:45 EST it still had not arrived. Our GKTW greeter, though, actually was also a Southwest employee, so we had an “in” as they looked for our luggage.
Currently we are short the kids pajamas and fresh underwear. (Update, the bag was delivered early in the morning. Whew).
GKTW is about 30 minutes from the airport. In the car you could tell that we all were getting a little worn out. Amy asked Daniel about halfway to the resort if he was tired. “No. I’m not tired”. “Are you going to take a little nap?” “No. I not.” 45 seconds later he was zonked. See picture at right.
However, we got checked in (Abby was presented with a stuffed Mickey dressed in the costume from the Wizard’s Apprentice segment of Fantasia, and the other kids each got a Shamu) without further incident, and headed to dinner, which GKTW provides for its guests on property. It was wonderful roast beef, mashed potatoes, salad, rolls, and hot dogs and macaroni and cheese for the kids. We were all really worn by the end of dinner.
Now they are all in bed. Sigh.
In April she will have another MRI and if all looks good, we will discuss a date to remove her port.
This Sunday we leave for Orlando, Florida on a long-awaited vacation. The very generous Make-a-Wish Foundation granted Abby's wish to visit Walt Disney World so we'll be taking our first family vacation since October 2002. Please pray for a safe trip and that our family will be a witness for Jesus while we are in Florida. For the first part of our trip, we will be staying at a resort called Give Kids the World. It is a retreat specifically for families with children who have life-threatening illnesses. We will certainly have opportunities to encourage others while we are there.
We'll post photos when we get back. Until then, God Bless.
Big Thanks from Abby
Thank you for all the stuff you gave me. Thank you for praying for me too. I felt special knowing that you were praying for me. God answered your prayers. He made my cancer go away!
Mostly, THANK YOU, GOD for loving me and healing me!
The numbness of relief
Amy and Steve bared their hearts to us that evening, trying hard to pass on some things they had learned about having a desperately ill child, and how to simply cope when you spend days on end in the hospital and you seem to know your doctors better than your own family members.
Something that Caleb's mom said to us has stuck with me over the past 9 months--"this is not normal." That, along with her experience spending lots of time in the Psalms, were two of the pieces of advice that most helped me over this time.
I had to remind myself of this again when Abby went into the MRI chamber this afternoon. She was nervous and worried that it was going to hurt. I kept thinking that we had done this all before, many times. And yet, Amy's words kept coming back to me--"this is not normal." Of course, it's not normal. Kids are supposed to run and play, swim and scrape their knees, build towers with Legos and dress up like princesses, go to school, have sleepovers.....not spend afternoons in an MRI machine under anesthesia.
But sometimes the abnormal is the road you take before you return to the normal. About an hour after Abby got out of recovery we stood before Dr. Shafron and heard him announce that her scan "looked great." He had already talked to the radiologist, and we would get a complete report later, but there didn't appear to be anything to be worried about now.
It seemed kind of anticlimactic in a way, but as we drove home I realized that I was relieved, but sort of numb. Yes, we will have to go back in about 3 months for another scan, and PNET tumors do recur fairly often.
And as we contemplate a return to "normal", even for a while, I find myself wanting to keep parts of the "abnormal"--God had many reasons for allowing this experience in our lives, I don't want to throw away important life elements or allow cruft that hindered our relationship with Him to return.
But, for now, we are "normal" (mostly) again. What a relief. What a reason to praise God.
Over the past few months we have been blessed because God has opened our eyes in so many ways. Our uniquely American, secular, logical, technologically driven world view can be so deceiving. Like so many other things (and if you have ever had any college-level physics, this will probably make more sense to you) it is a frame of reference that we use to try to make sense out of life. Frames of reference often leave chunks of experience unexplained.
American culture often dismisses the spiritual as irrelevant, or "personal", not to be discussed or processed with others. Our experience has taught us nothing can be farther from the truth.
Like Paul says in Ephesians 6:12: "For our struggle is not against flesh and blood, but against the rulers, against the powers, against the world forces of this darkness, against the spiritual forces of wickedness in the heavenly places."
And we have also come to more clearly appreciate family time--this past weekend we took Saturday to spend together as a whole family, going out to breakfast, going to the Arizona Museum for Youth, and getting haircuts--everyone including Abby (just for fun)--see attached photo. For some reason our hairstylist didn't charge us for Abby's cut.
We'll keep you posted as things happen. Thanks again for praying!
Abby was quite sad that she was still neutropenic (all our kids LOVE their fresh fruits and veggies and she can't have either when she's neutropenic), but she was glad that they discontinued her antibiotics and pulled her port access.
We will go back on Thursday to check her counts again.
On a more somber note, please pray for a little girl we met in the hospital during Abby's last chemo. Her name is Ava and she is almost 6. She is battling a very aggressive glial brain tumor and her treatments are not making a significant difference. Her mom seemed so disheartened when I spoke to her. I can only imagine what a heavy burden they are carrying.
Happy New Year's Day at home!
We were able to keep Abby cheerful with a little amusement at the hospital during this stay. We decided to have a little fun with Abby's doctor and her cheerleader Barbie doll. The doll has removable letters on her shirt. Daddy and Abby spelled out " I want 2 go home" on her shirt and Mommy hung Barbie on Abby's door. Josiah wrote the greeting to the doctor. He and the other nurses and CNA's were amused and the doctor claimed we were engaging in "Barbie torture".
So, now we will administer antibiotics at home until Tuesday morning when we will go check her counts. She is already on her way up, so we are optimistic she will no longer be neutropenic by Tuesday.
The next step is to have an MRI sometime the week of the 10th. We'll post when we get the exact date. You can begin to pray that it will be clear of any sign of tumor.
We hope you'll have a great beginning of 2005.