We're dreaming of a warm Christmas...

Yesterday I awoke around 4:45am with a load of anxiety on my mind. I felt that the delay between surgery and radiation was going to be too long, I didn't know where we were to go, I didn't know where we would stay when we got there or how we'd get around, and the price of rentals for such an extended period was shocking! Philippians 4:6-7 came to mind, which says, "Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus." So I prayed for Biz's health, and every detail of this venture...and I was still anxious. So I prayed about it again...and again...and I was still anxious. So I prayed about that Scripture saying, "Lord, you said that if I came to you about these concerns you'd give me peace beyond understanding, and I'm not feeling very peaceful." Hearing no voice and feeling no change, I got up.
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.

Father, can you carry this?

Some questions were answered today and others were thrown back to us. This, of course, means that we must throw them back upon the Lord, who knows everything, even the end from the beginning.
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!"

Dare we even ask?

In our conversation with Dr. Perkins this week, he mentioned that when the tumor board met about Biz's treatment, there was some discussion about whether she even needed radiation at all. If this is true, it would be an amazing answer to prayer. In fact, it would be an answer to prayers I had not even prayed, as I never imagined this could be possible. Please pray about this as the Lord leads. Medical studies have shown a much lower rate of recurrence when surgery and radiation are used together than when just one or the other is used. We don't want to do less than the best, but we also don't want to do more than is necessary because there can be harmful side-effects to radiation.
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.

Another chapter

Although we've been dealing with cancer, today marked Biz's first actual set of appointments in the oncology department. For me, this gave the waiting room a very different feel because you knew that every child there was in a "life or death" medical struggle. Otolarangology, where we've spent most of our time until now, addresses all types of ear, nose, and throat problems, and not all of them serious; ICU was intense, but moving toward recovery; oncology, on the other hand, was quiet, and patient, and deep. I didn't know whether to smile or cry when a boy around 8 or 9 entered the waiting room, all of his hair gone because of chemotherapy, followed by his dad, who had shaved his own head in love and support. Then there was the tenderness of a healthy 13 year old boy holding his ill 11 year old sister's hand because he loved her and she was stronger for it. This is a sobering place, but somehow full of God's mercy.
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.

Pressing On

Our next round of appointments begins on Monday, November 12. It is this process which will help us to determine the best care and treatment possible. Please pray for wisdom, for the doctors to have thoughts and opinions from Christ Himself, thoughts that might never have occurred to them otherwise. Pray for Elizabeth's spirit. She is so joyful now that I do not want anything to dampen her outlook, and I want everything to direct her thoughts to the love and goodness of Christ. I am praying for all of you, that her (and our) experience would make you more dependent upon Christ, joyful in hope, patient in affliction, faithful in prayer. Press on with us.
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."

Home Sweet Home

We're at 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.

Grace Administered

Deb has finally let me pull the overnight shift. The rooms at Children's Hospital each have a fold out couch that will accommodate one parent, and since Biz can now handle restroom and other such functions on her own, Deb can break away for a sorely-needed, uninterrupted night of sleep. We've had a "home base" at the Silverstein's for much of this process, just 10 minutes from the hospital, and it's a very comfortable place for all of us (in every sense of the term). More importantly, Biz is sleeping. We've moved out of ICU into the surgery recovery area where, instead of waking you up every 2 hours, they stretch it out to every 4 hours. If she gets a good night of sleep and is strong enough to walk around tomorrow (Biz was the first patient her nurse had ever had walk out of ICU, but it was tiring) we'll be coming home. I don't even care which ferry we catch.
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

12:30pm on Friday and we're still in ICU, but only because they couldn't get us a bed on the regular patient care floor. Her eye is still swollen shut, but the swelling has gone down considerably. Biz has had a tiredness headache this morning because she's not getting good nights of sleep--not only are they constantly poking and prodding and shining lights and giving medicine when you're in ICU, but they also make her sleep at an incline to help reduce pressure and swelling. Kind of like sleeping in the Lazy Boy (or the pew at church) which some of us do quite well... The change to a different unit will be welcome--maybe she'll be able to get a good night of sleep. Not that I'm complaining, mind you...the care they have been giving her is amazing. The doctors and nurses are all energetic, professional, and considerate. The love what they do, and they do it well.
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.

REMARKABLE

It is Thursday, almost 1:oo p.m. and Biz is once again sleeping. She is still in ICU, but only for monitoring and with prospects of moving to a regular room soon:) When the doctors came in this morning and saw her charts from the night, they were completely amazed. Their exact word was "remarkable". She went through the night with only Tylenol as a pain reliever, no anti-nausea medications, and the ability to track with her left eye. It is very painful for her to open her left eye, and it is quite swollen, but she really has been remarkable in her efforts to do whatever the doctors ask her to do, even when it hurts. We are so grateful to all of you that are so diligently praying for her, we can definitely see God working and giving her grace beyond measure. Keep praying for us, we are extremely tired, and have not gotten very good sleep here at the hospital. Thank you, Debbie (Psalm 119:92)