Management Problems

I just spoke with Biz and she is in the dialysis area of Children's Hospital awaiting her kidney test. In some ways, the kids and parents in that wing find themselves under a greater test of perseverance than we have known, as they must show up several times a week for several hours a day--indefinitely. Biz will only have to be there occasionally over the next few months to assure that the chemotherapy is not having a deleterious effect on her kidneys.
As I try to come up with a "home efficiency plan" I appreciate even more all that my wife does. It seems so natural for her, but for me...well...I forgot to buy toilet paper. It's called "crisis management" when I'm in charge of the homestead--anything but efficiency.
For some reason I'm less prepared for this round of treatment. I think we gave it more planning time when Deb and Biz went to Houston. There's also a lot more "spontaneity" about doctor's appointments and timing because we are "so close." Not to worry...we're like runners stumbling out of the gate. We'll have to run a little harder until we're back in the race.
We set up the table in my office again where the boys can do their school work. This may be one of the least convenient aspects of my wife's absence, but it's also one of my favorite. I like to watch the boys learning. Hopefully, when my wife gets back, their education will be none the worse for wear.

A higher hurdle to jump

The regimen that Dr. Johnson is recommending is "platinum-based," made up of three different medicines (carboplatin, ifosfamide, and etoposide). Her analysis was extremely thorough and she very carefully evaluated treatment recommendations from several other oncologists. We really trust her opinion--which is in effect what it is, given the rarity of the cancer.
For Biz, this means a few predictable side-effects (hair-loss, nausea/vomiting, and tiredness) and some potential and very undesirable side effects (kidney or bladder function problems, hearing damage, and danger of serious illness from low white blood cell counts). These are the matters for which we seek your most fervent prayers.
For the rest of us--we were told that Biz (and Deb) should expect to be away from home for at least two-weeks at a time, coming home to "visit" for a few days before the next round of chemo. I had imagined this to be a "worst-case scenario." It just got moved to "best-case." Dr. Johnson is not comfortable at this point with any less than four cycles, and we may be looking at six. With cycles occurring three weeks apart, you can do the math. We're looking at 3 to 4 months of treatment. Looking, as I am right now, at my boys trying to do their school work in the waiting room, I'm realizing how high a hurdle this separation will be. Almost as high as Biz's. If she can make it, so can we. "He will keep you strong to the end, so that you will be blameless on the day of our Lord Jesus Christ. God, who has called you into fellowship with his Son Jesus Christ our Lord, is faithful" (1Cor. 1:8-9).
At this moment Biz is in surgery having a central line inserted. I think she doesn't mind the pain as much as the anesthesia, and hospital gowns (they're never warm enough). While she continues to grow in character, please pray for her perseverance, and strength to jump the hurdles.

Hat's Off to Biz!

Often the most visible side effect of chemotherapy is hair loss. So I had an idea!! (I have to say at the outset that Deb is not always convinced by my ideas--like this one--but since I'm smarter than her, I think I'm right. After all--who invented MaCheeSauMe?! Good point, good point...)
Well, I thought it would be fun (for anyone who would like to participate) to give Biz a hat. After all, with summer coming she'll need to keep the sun off her head... Actually, I just thought this would be a fun way to say "Get Well Soon," sort of an alternative to Hallmark!
Use your imagination. See if you can come up with something that will remind her of you or your family or some memory of Biz or a significant event. Maybe just something that catches your eye.
I'll be posting pictures of the prettiest, ugliest, funniest, most meaningful, and ones that she actually wears.

I've been thinking about this one, myself:

For those of you with more sophisticated tastes, Biz's hat size is 6 5/8.

Chemotherapy: Beginning of Week One

Monday evening Deb, Biz, the boys, and I (Lydia will be staying with a friend for school) will head down to Seattle for an early Tuesday meeting with Dr. Johnson. Later that day she'll have a minor surgery to insert a central line (like a super-IV). On Wednesday, Biz has a baseline hearing test and 5-hour kidney test, which leaves me with one question: what do they do for 5 hours? I imagine it has something to do with drinking a lot of objectionable liquids.
Biz's first round of chemo is scheduled for Thursday.
The boys and I will come back to the island on Tuesday evening and return to Seattle on Friday morning. This is a consequence of competing goals. On the one hand is the priority of Biz's medical care, on the other is the desire to maintain the normal course of life for the other kids. I'm not sure if this ever works out exactly right but, with Deb in Seattle, Biz will be in very capable hands. How Lyd and the boys fare in my care is questionable. Of course, part of the solution is MaCheeSauMe. This is my own specialty. I like to say it's Indian for boxed Macaroni and cheese, extra Cheese, spaghetti Sauce, and Meat (whatever happens to be left over in the fridge). I'd tell you to write me if you'd like the recipe, but if you need a recipe you probably ought not to be near the stove. I ought not to be near the stove, but necessity is the mother of invention so, voila--MaCheeSauMe. Anyways, the boys love it, Lyd smiles and chokes it down, and I make enough to take leftovers to work. Maybe I'll take a picture of it so you can pray for us more...intelligently.
The Lord is good, and everything he does, and all that he provides, is for our good. He gives us a hope that does not disappoint because he has "poured out his love into our hearts by the Holy Spirit, whom he has given us." Herein lies the focus and the goal to persevere.
Rumor has it that the chemo will make Biz nauseous for a while. Please pray that she experience nothing but what is necessary in response to the medicines.
By the way, we all receive great encouragement from your comments. We end up checking all day to see who commented and what they've had to say. If you ever wonder whether we see them, we sure do. So, as the Spirit leads...

Just a lot of stuff

Yesterday we met with Dr. Rebecca Johnson, a very gracious and extremely thorough oncologist who herself had cancer as a young lady. The "cut-and-dry" fact is that Biz has either residual or recurrent cancer in her ethmoidal sinus. So, Dr. Johnson's recommendation is that Biz begin a chemotherapy regimen next week. There are still a few questions to answer before then, but if the plan stands, Biz will be at Children's Hospital on Monday for baseline tests and pre-treatment matters. Her first cycle of chemo should be on Wednesday.
The plan Dr. Johnson presented involves chemotherapy every three weeks. The application should keep Biz in the hospital for anywhere from 2-5 days and then require her to remain within one hour, door-to-door, from the hospital until her white blood cell count is sufficient to minimize the risk for further travel. This can take up to 2 weeks. For those who are not familiar with our location: home is two-hours, plus an hour and a quarter ferry ride (with departures varying from 2 to 10 hours apart) from the hospital. Needless to say, there will be some time away from home.
There is much to pray for in this plan, the foremost being its effectiveness. While we had been told that chemotherapy was ineffective in treating esthesioneuroblastoma, Dr. Johnson believes that not only is the sample too small to draw any definite conclusions (only 100 known cases among children worldwide since the 1920's--and vastly divergent treatment approaches) but she also believes that there is evidence to the contrary. Of course, as I read in Mark 1 last night, Jesus can heal all types of diseases. Another thing to pray for is God's grace upon our family in the disruption. It is possible that we'll be spending two weeks apart and one week together for a while. But the Lord controls blood cell counts, so he will not allow more disruption than we can benefit from. Hair loss for Biz is a prayer concern. She has such beautiful, dark, straight, long hair and her disappointment is significant. Our Savior strengthens hearts. There are also toxicity concerns. Just one of the three medications they plan to use can affect hearing and kidney function. Nausea is also common. Thankfully our Savior, Jesus, also strengthens bodies.
We look for, and constantly find, God's love in all of this. We are a bit overwhelmed at the moment, as there is so much to process, but we know that your prayers sustain us.

"On him we have set our hope that he will continue to deliver us, as you help us by your prayers. Then many will give thanks on our behalf for the gracious favor granted us in answer to the prayers of many." 2Cor. 1:10b-11

Appointment Change

Our appointment with the oncologist has been changed from 9:15 a.m. to 3:15 p.m. today so that the tumor board can meet first. They need to talk about the results of the biopsy and the PT scan from yesterday and decide on a course of action. Please pray for our strength.
During yesterday's scan the nurse said that we could call later in the afternoon to get the results "if it would help you sleep better tonight." I decided I'd rather not know. I guess I am not ready for more details until we can hear the whole big picture. At certain times of the day I can feel your prayers. I know that the Lord is carrying us in a difficult time. I know that God is good, and faithful, loving and kind no matter what. Pray that our faith (especially Biz's) would be unwavering and that we would remain focused on what we know to be true about the Lord, not on our circumstances. We are so grateful for all of you who check the blog regularly and pray for us so faithfully. It is a gift of God's grace to us and a huge comfort to know we are loved and supported by you. Thank you. Debbie

Perseverance

Perseverance is not something you have when the struggle begins.

• "We also rejoice in our sufferings, because we know that suffering produces perseverance" (Romans 5:3).

Perseverance's blessing is a matter of hindsight.

• "As you know, we consider blessed those who have persevered. You have heard of Job's perseverance and have seen what the Lord finally brought about. The Lord is full of compassion and mercy" (James 5:11).

Perseverance is not the goal; it's a tool.

• "Perseverance must finish its work so that you may be mature and complete, not lacking anything" (James 1:4).

Perseverance is sustained by a focus upon Jesus.

• "Let us fix our eyes on Jesus, the author and perfecter of our faith, who for the joy set before him endured the cross, scorning its shame, and sat down at the right hand of the throne of God. Consider him who endured such opposition from sinful men, so that you will not grow weary and lose heart" (Hebrews 12:2-3).

Please pray for our perseverance.

As you pray

Looking ahead to next week, what we know so far is that Biz has two appointments: Monday at 9:00am for a PET scan and Tuesday at 8:15am with the oncologist. Please pray for wisdom and healing.

Just when things were looking up...

I find myself uncertain about what to write at the moment.
This evening we received a call from Dr. Perkins. Biz's MRI was not encouraging, and a biopsy taken during last week's minor surgery had "abnormal cells."
They will call us tomorrow to schedule an appointment with oncology.
Please pray for Biz.

Stress passed

The surgery and the MRI both went flawlessly, and we're now at home recovering from post-traumatic stress syndrome. Thankfully, our stress was not a consequence of any medical concern but a response to the ferry schedule (for those not from the island--ferry stress is a natural phenomenon, accentuated in type-A personalities, resulting from the inordinate desire to accomplish everything on one's off-island to-do list and yet make the next ferry. Symptoms include speeding, praying, blaming your spouse for delays, and increased blood pressure levels).
At this point Dr. Perkins feels Biz should have bi-monthly, rather than quarterly, check-ups so our next round of appointments is being scheduled for the third week of June--the same week that we take Lydia to the airport for her missions trip. I may not survive such a week of fatherly trauma...

We are always so thankful to Jesus after these appointments for the quality of the doctors we have had caring for Biz. You can rejoice with us that so many of our questions were answered and that there was so much "good news."

Good Report

Biz's MRI was postponed until her nasal cavity can be cleaned out--in Biz's case this requires a minor surgery; after that, they'll do the MRI (this will all be done tomorrow).
This is a matter concerning which we seek your prayers. The only potential "fix" to these quarterly surgeries is for Biz to rinse her nose with saline several times a day--an unpleasant duty no matter how you do it. As the doctor said, it feels like snorting pool water up your nose. I say, "potential fix," because there's no guarantee that this will help, but it may. The sinus build-up might be a life-long cross for Biz to to bear, but diligence about rinsing may help her significantly. Deb and I are a bit uncertain about how to approach this as parents. We could take the responsibility upon ourselves to remind her and require her to rinse at intervals throughout the day, or we could say (as we have), "This is something you must own for yourself, since we won't always be with you." Better for her to learn this while she's young and in our home. The down-side of this approach is that a lack of diligence in this matter means a scheduled surgery at the otolarangology clinic--a prospect that Biz finds more unpleasant than rinsing. Pray for our wisdom and her maturity in this matter.
The good report is that Dr. Moe waived any thought of reconstructive surgery for at least 2-3 years, if at all. He assured us that healing is nowhere near complete; it may take up to a year, especially in radiated tissue where blood flow and normal growth have been disrupted. He is amazed at the fact that Biz has no double-vision and feels that time may resolve most, if not all, issues related to appearance. He warned that to do anything drastic at this point may result in us, "snatching defeat from the jaws of victory."
We continue to pray for Biz's healing and protection, and to give thanks for all of you who held her, us, and our family up to the Lord in these times.
Oh, we also planned on buying a new dishwasher on this trip off-island but on the ferry ride over we were talking to some friends who...long story made short...put us in touch with a nearly new, free dishwasher. God works in mysterious ways.

The road goes ever onward...

It's been nearly two months since my last post, a fact that is reflective of our experience at home. Life has been pushed back into its normal patterns. Biz continues to heal. The boys continue to grow. Lydia has taken up a new venture--she hopes to go to Malawi this summer with Teen Missions, Int. I am surprised by the vanishing sense of control that I once thought I had over the comings and goings and desires and circumstances of family life. I suppose this illusion is best replaced by the constant awareness of God's grace in all situations and the humility to entrust our families to the Lord's care.
I've been rebuked several times for abandoning the blog. I take that as a complement because a number of people have admitted the great benefit they've received from reading it. However, there hasn't been much to say about Biz's recovery and I'm not sure that this blog is the place for other musings. As one person said, "[The blog] served its purpose for a time," and in a practical sense that time has passed. I'm also not sure that another blog published by yours truly would be met with the same interest, or convey the same benefit, as this one because this one has been about ultimate issues and the gravest of needs among people we really care about.
My purpose for this post is two-fold. The first is to enlist the prayers of any who might still look for an occasional post. This Wednesday Biz has the first of her post-treatment check-ups. These are scheduled on regular 3-month intervals and include an MRI to ascertain whether there has been any recurrence of the cancer. Three months ago I considered this routine; today it feels quite different. We will also be consulting with Dr.'s Perkins and Moe about needed reconstructive surgeries. Last week Biz registered for freshman year at our local high school and we'd like to put behind her as many of these medical issues as possible before she begins her high school career.
The second purpose for this post is...to follow. I have struggled with some other lessons since things have "settled down," lessons that I trust will be important later, but time compels me to publish this much.