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.