Biz: great babysitter
Tuesday, December 18, 2007
I've Got Tough Girls
While I don't know anyone sweeter, I also know that my wife has no problem standing on principle and continuing to stand until the appropriate changes have been made (I guess that's why our kids are so well behaved...). But by her assessment, Deb has never had to exercise such insistence and resolve as she did today. Please pray for her strength. We want what's best for Biz--that's why we're separated by a couple months and couple thousand miles. Pray that she will advocate well for Biz even though she must do so alone. Pray that she won't be warn down if the Lord wants her to be a rock, nor that she'll become an irritant if unwarranted (this was her specific request). Pray that only appropriate changes would be made and that, if necessary, the doctor would recognize the need to start from scratch with a new mask and a new computer model. Today they plan to try a shim but, since precision is our reason for being at M.D. Anderson, "good enough" is not good enough as far as we are concerned.
We prayed together at the end of our phone call, and the Lord brought us peace--and a game plan--but often the game plan is just my own and the Lord already has it all worked out. I trust that a better report will come this evening. This may all be just a part of the Lord's answer to our prayers for Biz's protection.
Monday, December 17, 2007
A New Superhero?
Today is the (next) big day
In all she has 28 individual "cycles," as they call them, which means 28 days of radiation treatments--5 days a week, minus a couple days for Christmas and New Year's Day. If all goes according to schedule, which I surmise is not assured, Biz's last treatment will be on January 30th. Conversations with doctors in the next few days will help us determine how close to that date we should schedule Deb and Biz's return flight.
Deb will be making the daily trek to M.D. Anderson during rush hour traffic because Biz's treatment time is 5:00pm each day. The appointment time is actually a blessing, from our perspective, as it allows Biz time each day to do her school work, plus a relatively free block of the day for Deb and Biz should they need or want to do other things. But please pray for safe and timely travel each day on the madness that Houston calls a highway.
Pray today for peace as Biz did not much appreciate having her head clamped down to the treatment bed when they made her mask. It's imperative that she remain calm and still for the duration of the cycle, and if she has any claustrophobic feelings that will make it more difficult.
"Lord Jesus, thank You for being with Elizabeth everyday--including this day. I pray that today, from the riches of Your grace, you would strengthen Biz by Your Spirit to accomplish the task before her. Please give her a sense of Your presence with her in the treatment room. I pray that You would keep her heart at rest even as You protect the healthy tissues and organs of her body during her radiation treatments. May this all work together for her good, her healing, and the honor of Your name. Amen."
Thursday, December 13, 2007
Joyful suffering
Nevertheless, I'm enjoying the concentrated time with the other three. I get to home school the boys on some days (with help from friends on other days), and review homework with Lydia in the evenings and on weekends. We're also spending available evenings together watching the memorable Christmas movies, A Christmas Story being my personal favorite. We're being supplied with excellent meals from friends and neighbors so, all things considered, the suffering is minimized.
Telephone reports from Houston have been positive. Biz has spent the last two days (except for morning appointments) working for Charlsie Pogue at her office. If any of you have had Biz working for you, you know that she excels as a helper--very conscientious and proactive. The opportunity (and the money she's making) has been a boost. It's been many days since she passed the "tired of appointments" threshold, so now she just accepts them. I once asked a young Israeli if he was taking English classes because his school required it, or because he wanted to. He said, "Oh no, I want to. If I didn't, they'd make me." Preference has no bearing upon the subject at this point.
Deb and Biz attended a little church in Houston on Sunday, Christ Evangelical Presbyterian Church, only about 500 people. Compared to some of the mega-churches available in the area (even some good ones) it was an intimate setting. I was able to listen to the sermons on the internet and think the pastor does a great job (biblically-centered and doctrinally-faithful, and interesting to boot). Some people in the congregation reached out to the girls and plan to have them over to make Christmas cookies. It seems that CEPC may be a good respite for the extended stay.
I'm continually asked--and I do not mind at all--if there is anything people can do to help. Aside from being terrible at delegation (and asking), I really can't think of any physical need we have. Only prayer. Thanks to the generosity of MANY, and especially to the Lord who worked in each one's heart, I have even been able to write checks as the hospital bills come due. This was one of my early prayer requests, and the Lord has provided.
Treatment begins on Monday.
Counting down the days until we're together.
Considering each trial pure joy because we see our Savior in it.
Sunday, December 9, 2007
Infinite Love
Last night during our church prayer meeting I was listening to someone pray for my daughter and I sensed that I was becoming hesitant to ask God for some things. It was as if I was afraid of reaching the limits of grace available to me, as if to say, "Boy, God sure has done a lot for us so far. I shouldn't impose upon Him any more than absolutely necessary." What a crock! I never deserved any measure of grace! It has all come as an expression of love.
Within my heart there are always remnants of an old way of life--the way of life that wants to obligate God. I had been tempted to consider God's grace just an appropriate response obligated by the severity of our need. We've all seen people respond in this way--the more severe the need, the greater the sense of obligation to meet it. Picture an infomercial about starving children in Africa and you'll understand what I mean. When you watch it you're not really compelled by love for them, but by the severity of their need and the level of guilt you may experience at your failure to help. And when you've "done your part," the obligation has been met. This is the sense of obligation that I had been inferring upon the Lord's abundant goodness. We were the starving Africans and he was the wealthy American obligated to respond to the need. And it was getting to the point where He'd done his part.
So there, in the midst of prayer, the Lord impressed upon my heart to continue seeking Him in all things and at all times, because the reservoir is limitless. He never was obligated. He only acts toward us out of His love for us. Every bit of mercy that He shows us is an expression of limitless love. The Lord gives and gives and provokes us to seek more. He does not become burdened by our constant asking, but delights in opportunities to prove that His love is without end and the riches of His grace are free flowing and liberal.
The simple fact is that we can't impose upon the Lord or obligate Him. We can, in our pride, lower our expectations of the Lord, but He will reveal His love anyway. So...pray with me and don't slacken in your requests because our need will never exceed infinite love.
A brief update: I left Debbie and Biz in Houston on Saturday to come be with the Lydia, Connor, and Sam. Deb will have to help Biz (with the Lord's enabling) through her first and early treatments on her own. Then we (me and the other kids) will travel to Houston on Christmas Day to be with them for a week and then Deb and I will swap duties. It's hard being apart, but it is for the good.
Oh...did I forget to mention...
Thursday, December 6, 2007
Big place
Today Biz is having a PET Scan. It still remains for next week to take a field of vision test, an audiology test, and one or two more physician consultations. These have become routine for us, far different from our initial experiences when all was new. But please continue to pray for the doctors to see what they need to see and to have thoughts about treatment that are guided by the Lord. Please also pray for Biz's "human interaction." She's been spending a lot of time with adults lately and has only two little dogs for playmates. She could use a friend her age.
The conclusion of the story…
Please pray about this, also: during our pre-treatment appointments we’ve been told that nausea will accompany the radiation, which becomes progressively more intense. However, in talking with people undergoing treatment there is a high percentage that experiences no nausea at all. Please pray that Biz would have no illness or loss of appetite during her treatment.
A day without appointments or test, for which Biz gave thanks when we prayed at breakfast...Wednesday, December 5, 2007
The Exploder
This is a story in process. Biz and I are now sitting in the waiting room contemplating whether to get a taxi home. I don't have the Pogue's phone number with me, so...
At least we're on time for our appointment, and the vehicle is not sitting in the middle of a city street.
Tuesday, December 4, 2007
Another waiting room, another post
Speaking of change of pace: we are about 30 minutes away from the hospital and the highway that we travel (I-10) is in the process of being expanded to 20 lanes (10 lanes each direction)!! I guess that's what Texans mean when they talk about growth management. For those of you from San Juan Island: you've got to try this! But only once. For those of you not from San Juan Island: may God give you grace. For those of you from Houston, TX: the road hazard in the middle of the highway--that's me. Sorry.
Blog on the run
I have to blog on the run. Our host’s modem was just fried in an electrical storm, so I guess I’ll give updates from wireless-enabled waiting rooms. Most of what follows was written last night:
We arrived at our
Yesterday (Monday the 3rd) we met with Dr. Kornguth, the radiation oncologist, and had the treatment and risks explained once again. Happily, his assessment was more optimistic than the one we heard in
The second most difficult thing about the day was the “simulation,” during which they prepared a mask to hold Biz’s head still throughout the treatments. Picture the black material that attaches itself to Spiderman in Spiderman 3 and you’ll get the picture—except that it hardens in place and clamps down to a bed. Along with that they put a cork in your mouth taped to a tongue depressor so that you can hardly breath out of your mouth—and of course the mask plus recent surgeries hindered breathing out of her nose—and you can understand the feeling of claustrophobia and suffocation. Please pray for her peace and comfort each day of radiation, a matter of less pain than mental distress. Biz finally got through that, so we're on our way to another series of tests. On Friday they will do a PET scan to assess the lymph nodes in neck. Dr. Kornguth would like to refrain from radiating them if there is no evidence of infection.
The most difficult thing about the day was hearing the story of Arjun Vaghela, a little boy from Seattle at MD Anderson whose parents, Nayana and Umesh, we met in the waiting area. Arjun is 6 and has a similar cancer. The greatest difference in our stories is that they do not know Christ, and so they do not have the hope we have. I told them that I was writing this blog for all our friends who are praying for us and that you would pray for them too. Ask the Lord to reveal Himself to them through this. They'll be here through Christmas, so we told them we'd have them for over Christmas.
Tuesday, November 27, 2007
We're dreaming of a warm Christmas...
I left for work with a plan. I was going get online and email churches in Boston and in Houston, explaining our situation and waiting to see what the Lord brought about. When I sat down at my desk I opened my computer and before I could do anything further, the phone rang. It was from a couple in Houston (the Pogues), friends of a friend, who just wanted to let us know that they have two extra bedrooms upstairs, with a private bath and living room, and they would like to offer them for our use...more than that, they also have an extra car for us to use...more than that, he was able to get us airfare with Continental Airlines...
This morning, at 5:45am, the phone rang. It was MD Anderson Cancer Center in Houston. They want to see Elizabeth on Monday.
Today I realized that Philippians 4:6-7 never stipulates how or when the Lord would bring his peace, but I want you to know that my anxiety is gone. The Lord is so faithful, and will answer every prayer...at just the time we need.
Please pray for our travel plans. Lord willing, Deb and I plan to "tag team" this trip...she'll stay with Biz for a couple of weeks, then I will, then she will. We plan to take the whole family down for Christmas. I think I'll bring some shorts, just for fun. Pray also for Biz. In many ways, this is the most dangerous part of her cancer treatment, with risks of short-term, long-term, and lifelong side-effects should radiation damage certain tissues (like her retina, optic nerve, tear ducts, and/or pituitary gland). Pray for God's protection of these important body parts, and the destruction of any remaining cancer cells. Pray also that he would both sustain and strengthen our family. It's a long time to be apart, and the kids will likely have to eat my cooking. Most of all, help me fulfill one stipulation from Philippians 4, "with thanksgiving." The Lord continues to bless us and answer our prayers more abundantly than we could ask or imagine.
Monday, November 19, 2007
Father, can you carry this?
According to Dr. Douglas, though oncology doctors might have different opinions about the appropriate "modality" (type) of radiation, all would agree that radiotherapy is necessary in Biz's case. Esthesioneuroblastoma has a very high rate of recurrence, even after what they call a "gross total resection" (i.e. complete surgical removal) of the tumor, such as Biz had. Microscopic disease cells often remain and become the source of a second tumor. Dr. Douglas doesn't recommend risking the potential aggressiveness of this cancer. Recurrence is almost always more severe and the statistics for success diminish accordingly. If Biz was his daughter, she'd undergo radiotherapy without question.
As to where and what type...there are essentially two primary options: photon beam and proton beam. The first, photon, is what we might call the "traditional" type. The second, proton, is a less-than-perfect, though much improved type of radiation that has less effect on surrounding tissue. This is the "hot ticket item" but is available primarily in Boston, MA and Houston, TX (there are 3 other centers in the US, but they are lacking in experience with either Biz's type of cancer or with pediatric cases). Dr. Douglas agrees that proton is the best approach technically, but suggests that because of Biz's age and some improvements in the photon application, the benefits of proton could be modest and must be weighed against the difficulty and family disruption associated with an 8 week trek across the country.
I won't bore you with statistics or percentages as I am reminded from the book of Isaiah that Yahweh is not bound by prognoses--He creates them. But I will ask you to pray for wisdom, for issues of insurance coverage, for questions about travel and living arrangements, and for the Lord's protection of Biz's affected healthy tissues--primarily her eye and her pituitary gland (from where such things as growth hormone come). Pray for us especially tomorrow (Tues.) as I will be making important phone calls and we will be making a decision--time is of the essence.
Pray also for contacts in either Boston or Houston where we can set up a "home base," maybe someone with an available couple of beds and a heart for hospitality. I will probably call some churches in those areas.
I know all this treatment and risk talk must have Biz concerned, but you'd never know it. It is the grace of God that allows a child to entrust overly heavy burdens to his/her parents and know that they will do what is best for him/her. At the moment I feel a bit overwhelmed, like one of our kids when they try to carry a suitcase that's too heavy for them, struggling along until they call out, "Hey Pop, can you carry this for me?" Deb and I trust that our Father will do for us what we would do for our own children. "Which of you, if his son asks for bread, will give him a stone? Or if he asks for a fish, will give him a snake? If you, then, though you are evil, know how to give good gifts to your children, how much more will your Father in heaven give good gifts to those who ask him!"
Tuesday, November 13, 2007
Dare we even ask?
We know that the Lord "is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us." We meet with Dr. Douglas, the radiation oncologist, on Monday the 19th and are seeking the Lord's guidance.
Monday, November 12, 2007
Another chapter
We spent from about 10am to 5:30pm at the hospital, covering several appointments and a couple of medical tests/CT scans. The most difficult part of the day was a minor procedure that Dr. Perkins performed. He was going to schedule it as a surgical procedure on another day since Biz still had some discomfort in the area. Biz said, "I'd rather do it now. I don't want to come off island again." So, despite the pain, she sat rock-still while he did what he needed to do, without anesthesia. That allowed for an immediate CT scan, and other appointments, and it will also facilitate quicker healing.
We were still unable to meet with Dr. Douglas, the radiation oncologist, which we had very much wanted to do, but we must leave that to the Lord's timing. We are scheduled for that appointment one week from today. Other conversations have encouraged us that we will get the best, unbiased opinion from him, as well as his "clout" behind our care. He is apparently very well known nationally.
Please be in prayer about the decisions and plans we must make. Also give thanks to the Lord for the amazing recovery Biz has made so far. The swelling continues to diminish, and her spirits are up. Having been assured that she would have at least temporary double vision, the Lord has shown that He is not subject to prognosis. Biz was disappointed today by the assurance that radiation makes people feel ill. Pray that such would not be her experience.
Thursday, November 8, 2007
Pressing On
One thought as you pray. This comes from The Power of Prayer in a Believer's Life, by Charles Spurgeon. "The throne to which we are called to come is the throne of grace. It is set up on purpose for the dispensation of grace and from which every utterance is an utterance of grace...If in prayer I come before a throne of grace, the faults of my prayer will be overlooked...How this should encourage any of us who feel ourselves to be feeble, wandering, and unskillful in prayer."
Saturday, November 3, 2007
Home Sweet Home
Biz has been remarkably light-hearted and unconcerned about her swollen face--I think I've witnessed about 5 years of maturing in just under a month. When asked if she'd be ready for church tomorrow, she just said, "Yeah, I think I'll feel good enough." She has had a bright smile on her face all day.
It was a delight to rejoin the rest of the family. We did all the normal stuff--play PlayStation, eat dinner, have devotions together, and give thanks to the Lord for friends and family whose love has made these days the maturing, encouraging, hope-giving, focusing, deepening days they have been. Not that our prayers may slacken; there's still much to do, but also much evidence of the love of God upon which we can hold. I feel sorry for Job, who did not have such a benefit in trials. Yet in the end he had one great confession: "My ears had heard of you but now my eyes have seen you."
I thank God for my family and our home. I thank God for growing my children, and especially Biz, in their trust in Him.
I could (and will) say more, but right now everyone is in their own beds, and we have a great God to worship tomorrow. Time to sleep.
Friday, November 2, 2007
Grace Administered
A couple of lighthearted moments enriched the day. The first...a friend of hers from Mt. Vernon went trick-or-treating for Biz and brought the candy to the hospital. Among the goodies was a gummy eyeball (actually about 10 or 15 of them--must have been this year's hot item). So Deb took one out to the doctor who was in charge of the ICU and said, "This fell out, should I just put it back in?" Biz thought that was hilarious and it produced the first rolling laughter I've heard from her for some time.
The second comic relief...The nurse brought in a capsule of antibiotic--the type with a plastic-like shell that dissolves in your stomach, like Contact. Biz had never seen one of these before, so she took the top off and some of the powder spilled on to her thumb and finger. Not wanting to short-change Biz on the dosage, Deb said, "Don't worry about it; just lick it off." What neither of them expected was that the medicine tasted SO BAD that it triggered her gag reflex and Biz almost threw up on the spot. She rinsed her mouth repeatedly, tried bread and other food, anything to remove the taste that continued to agitate the gag reflex, and it just wouldn't go away. In the meantime Deb had put the capsule back together and handed it to Biz, telling her she needed to take the rest. Only after a few moments of parent-child tension did we all realize that Biz thought Deb was telling her to take the top back off and swallow the powder down, which Biz was certain would just not work. We all rolled with laughter when we finally got it figured out.
I consider both of these events administrations of God's grace. When some humor is needed, God can create some very comic moments. When God's children endure hardships, God's grace enables them to persevere. Sometimes his grace grants physical deliverance from cancer, other times the deliverance is far greater. Always it gives strength in the battle--if we will rely upon him. I think I have begun to understand what Paul meant when he wrote that we should not "grieve like the rest of men, who have no hope." There is a choice involved in this and either God's children will or God's children won't. The strength doesn't come from trusting in doctors, or in diets--though the Lord often uses these in the healing process. It does not come by confessing happy words or trusting in our faith. It comes from knowing our God, who has all power and wisdom and love, and entrusting ourselves to him because we know that whatever the outcome it will be the most loving and wise, because he can make it turn out any way he chooses. Sometimes our world is way too big and our God is way too small. We never imagine that God's grace will provide the strength we need before we begin the fight, but our testimony is that, in answer to many prayers, the peace of God has guarded our hearts and our minds in Christ Jesus. His word is true. Sometimes God's grace provides rest and comfort in strange places. Sometimes it supplies our needs through the generosity of others. Always it transforms us. Always it is sufficient for the need at hand.
Midday Friday
Here's some of the ways the Lord has answered our prayers so far...
Yesterday, Dr. Moe came in (followed by Dr. Larry and Dr. Curly--just kidding, but I knew you'd be thinking it too)...anyway, Deb and I have been constantly thanking the doctors for their effort and excellence, and Deb told Dr. Moe that she thought he did an amazing job. He responded, "it went better than we could have imagined." We had been praying for the doctors, as you all have been--we prayed for their strength and performance during the surgery, and when they came out to discuss the surgery with us we prayed with them, giving thanks to our trustworthy God for what he had enabled them to accomplish. But when even the doctor is impressed with how well the surgery went all praise goes to the Lord.
During his check-up yesterday, Dr. Perkins, the pediatric E.N.T., said he has never heard of someone coming out of this type of surgery without double-vision for at least the first few weeks (often longer). When he asked Biz how many fingers he was holding up, she said "one." In answer to your prayers, the Lord has kept Biz from having double vision.
We reached one small milestone: Biz took a shower last night. It wore her out, but she did it. We also pushed her around the hospital this morning in her wheel chair and hope to go for a walk after lunch. (Update: we played Gin Rummy instead and she beat me like a drum).
Things still ahead for prayer:
We are begining to discuss radiation therapy to kill the cancer cells that remain. Technically, Biz has had the tumor removed, but she still has cancer and, left untreated, it will recur. Options for what is best may take us as far away as Boston or Houston. Traditional radiation causes harsh side effects to any sensitive, healthy tissues through which it passes. This could result, in Biz's case, in eye problems like cataracts or even blindness, and cessation of growth on that side of her face. New technologies have been developed at places like Harvard Medical School that may help significantly. Pray for wisdom as we speak with the UW specialist.
Thursday, November 1, 2007
REMARKABLE
Girls at pool
poor Garret...