Abby's Journey Archive

We returned yesterday from a fun weekend in Sierra Vista with my family. We celebrated with Abby's cousin, Haley at her baby shower. We also enjoyed Aunt Shelly(my sister) and Uncle Roy's indoor pool. (Abby especially appreciated being able to swim with no sunscreen and no swim hat!) We also had the opportunity to see God's handiwork in Kartchner Caverns. Daniel's favorite part of the cave was the "cave bacon" formations (they really do look like bacon). We even got to "camp out" in a tent trailer. It was a great weekend.

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.

Sorry to have been so out of touch this past week. We had a wonderful trip and have felt completely blessed by God's presence.

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.

We want to thank everyone who came out to the worship service and sang, prayed, and wept with us tonight. It was a sweet, sweet time with the Lord. It is truly amazing what can happen when the body of Christ comes together for a single purpose.

In case it wasn't clear from our earlier post, Abby's praise and prayer service has been moved to tomorrow, August 14th, at 7:00 PM at Faith Church of the Valley, 2125 E. Chandler Blvd, Chandler, AZ 85225. Phone there is 480-838-6559.

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 made it home with Abby by lunchtime. She is pretty tired and her headache seems to be improving a little at a time. The Decadron will take 12 to 24 hours to work so we hope she'll be feeling a little better by tomorrow.

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.

Abby woke this morning with a headache, and when she got out of bed she lost her balance and hit her head. In addition she was very weak on her left side. She had no bruising on her scalp, so she didn't hit it very hard. Dr. P wanted to see her right away, so we packed up and came to the office where they gave her a dose of Decadron IV in hopes of relieving some swelling and intracranial pressure. We're waiting to see if the Decadron is helping before they let us go.

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.

We gave Abby her first dose of Temodar last night. She did get sick once, but is feeling fine today. She is pretty tired and she's fighting off a cold. Other than that she seems do be doing pretty well. We will give the chemo for 5 days and then have 21 days off. We were told that her blood counts will drop but nothing like what we saw before. She should not become neutropenic.

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.

We just finished talking to Abby and Josiah about our situation. They both cried when they realized just what C.R. was saying. Abby was first concerned about missing us and then expressed more concern about everyone missing her. We assured her that although we will miss her a lot, she will be so happy up in heaven with Jesus. That seemed to comfort her.

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.

Amy and I met with Dr. Panchoosingh today as well as our favorite Child Life lady, Debbie. We had a long talk with them while Abby and Josiah watched a movie in another room. In light of what was present on the MRI from earlier this week Dr. Panchoosingh suggests maintenance chemotherapy using Temozolomide (Temodar). Temodar has been proven to be effective in slowing the growth of many brain tumors. Our neurosurgeon, Dr. Shafron, looked at the scans and does not recommend further surgery. Dr. Sapozink, the radiation oncologist, said the areas are too large for radiosurgery. We might consider seeking a phase I or phase II trial, so we will be researching those possibilities. Abby will be disqualified from many trials due to the lack of consensus on her diagnosis, but we will still check into it. It is likely that we would need to wait 3 to 6 months before she could join.

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.

We have a final MRI report and it doesn’t look favorable. All the areas from before are larger and there are some new ones. We have an appointment with the oncologist tomorrow morning to discuss our options.

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.

Abby's MRI is scheduled for this Wednesday at 1 pm. She is loving being home and continues to try to eat more every day. She even tells us that she should eat her healthy foods before eating treats :) We'll post results from the MRI as soon as we hear something. Hopefully that will be by Friday.