Updates for John, January 21-27, 2004

Posted Tuesday, January 27, 2004 at 11:07 pm

Ok, I've got whiplash. Plans got changed when we were told the cat-scan showed a kidney mass. We canceled our plane flight when my brother-in-law shook things a bit. God provided time today so that John could, under general anesthesia, have both the knee and kidney biopsied. The knee showed osteosarcoma as predicted and the kidney showed a benign cyst (which needs no treatment). Thank the Lord.

Then the chest CAT-scan final report showed definite evidence of small amounts of cancer in John's lungs. The treatment for now is an agressive all out attack with chemotherapy in the hopes the tumor is sensitive to the stuff. We are flying out Wednesday morning and will arrive in Ft Wayne at 1 pm. Hopefully, we can get John's braces off Wednesday afternoon. If all goes well, (and God doesn't blow everyone's mind with an immediate miracle) we hope to get a central line put in and start the cell war on Thursday.

I'm sure it won't surprise you to hear that a cancer center is an interesting place to get into conversations with people about Jesus... I haven't gotten much reading done.

Thanks for your prayers...
God is good...mysterious...but good.

Posted Tuesday, January 27, 2004 at 11:15 am

About forty-five minutes ago, yesterday's CT scan was being reviewed and John's uncle found a 4 cm mass on John's kidney. We are reeling, but trusting for God's peace. Phil and John will not be able to come home for a while. Johnny's uncle is really shaking things up at MD Anderson. It looks like they will be able take both biopsies this afternoon under general anesthetic.

Pray for wisdom. Thanks.

Posted Monday, January 26, 2004 at 10:33 pm

Big day today...

Johnny had a chest CAT-scan that looked clean, yeah!! I met with the oncologist armed with questions. The conclusion was that we can reasonablly follow through with John's treatment in a Ft. Wayne hospital under the care of a pediatric oncologist named Dr. Hill, someone I have refered many patients to.

I contacted Dr. Hill by phone and he said he would be happy to help in any way he can. The biopsy I thoght was scheduled today was actually just a consult to prepare for the biopsy that will take place on Thursday. I would be happy to leave some tissue behind for their research but I don't think I can hang until Thursday...time's a wastin'. I just got tickets for home and we will fly out Tuesday and arrive in Ft. Wayne at 9:57pm. I plan to let Dr. Hill know we're on our way tomorrow and hopefully he'll be able to arrange for a biopsy and port placement Wednesday or Thursday. After that, we can get on with chemo if God doesn't heal John between now and then.

I also met with another oncologist who takes care of Adult (16+) sarcoma patients. He brought some interesting issues to the table that will help a lot as we decide on what course to take in John's care. God answered your prayers for clear direction. Now pray for a smooth transition and perhaps a little faster pace in getting John the care he needs.

Finally thank you for your continual prayer for John's miraculous healing...if that is not the course God chooses it won't be for lack of prayer!

Resting in God's peace and joy,

Posted Sunday, January 25, 2004 at 10:20 pm

We had a restful day and great worship service today. John went to youth group with his cousins tonight, saying "if I'm going to be down here for a while I might as well get to know some kids." Tomorrow is a big day. A cat-scan of his lungs looking for metastasis, blood tests, and a biopsy of the tumor. A visit with an oncologist friend of my brother-in-law who deals with adult sarcomas early in the day to help me know what questions to ask John's oncologist when I meet him later in the day. Some times it is helpful to get a heads up on what the issues are. I would like to come to some conclusions on a plan of treatment tomorrow. Then another issue is before he can start chemotherapy he needs a port put in and this is not scheduled until a week from tomorrow. My brother-in-law knows someone at another hospital who does these on adults for him with a one day notice. I'm hopeful we can move things along a bit so we can go home and perhaps get the remainder of the chemotherapy in Ft. Wayne. Pushing poison isn't rocket science once you decide which ones. Also John needs his braces off for chemotherapy. Chemo causes mouth sores and the braces would aggravate the situation. Our orthodontist is making arrangements with an orthodontist here...pray this doesn't hold things up.

Thanks for your prayers...we feel God's peace and even some joy.

Posted Sunday, January 25, 2004 at 8:56 am

I spent a few hours in the medical center library yesterday researching the various options available to John. There is a surgical operation for an above knee amputation that involves converting the ankle joint into a new knee. It has been done for at least 15 years. Kids who have had this operation often can be involved in athletics and have a gait very similar to their pre-amputation gait. Sounds like the best of a host of rotten options...these are not the kind of decisions I would wish on anyone. Other treatment decisions include whether to do chemotherapy before or after surgery, the research is not clear cut.

You can specifically pray that if we need to make those decisions that God will make the correct way obvious. I know in my heart that it really doesn't matter which way we decide because God can make even man's wrong decisions right. I'm working hard not to dwell too much on the future. God's grace is sufficient for each day and the trouble therein. He will give us the grace for tomorrow when tomorrow comes. I know the path of self pity is a hole that leads nowhere good. Scripture, prayer, and love and encouragment from other believers help keep me on track.The Lord is good and his mercy endures for ever, his faithfulness continues to all generations.

John and I are so thankful for all your prayers...

Posted Saturday, January 24, 2004 at 2:40 pm

Woke up today fantasizing about God healing John between the biopsy on Monday and the MRI scan of the tumor Tuesday. Imagining the unbridled joy.

I think thoughts of faith that heals and my mind drifts to the father in Mark 9 "I do believe, help me overcome my unbelief." Then Jesus healed his son. I know the path to Christlikeness often comes by way of adversity endured. I am grateful God doesn't ask me to choose between my son's healing or knowing Him more intimately...maybe I can have both.

God knows best and He always acts in love...these are the things on my mind today...thank you God.

Romans 11: 33-36 is sweet!


Posted Friday, January 23, 2004 at 8:40 pm

Tough day today.

We were told yesterday as we left the medical center that they are scheduling more tests and would call us with the details today. We waited and finally heard at 3 pm that we would have some tests Monday and Tuesday, then perhaps see the surgeon again Thursday to discuss options. Did I make the mistake of asking God to teach me patience?

Lots of conversation with God today...mostly surrender...man this is hard...at least I can cry.

My brother-in-law, an oncologist at the same hospital in a different department, called me at 4 pm to see what had happened today. When he found out nothing he was outraged....hopefully he can grease the skids. I just rest in my fathers hands and trust He will take care of things in his time. Johnny is doing great..."I just wish they'd cut my leg off and get it over with." We talk a lot. Scripture comes to life in they valley....check out Ps 73:25-28. "It is good to be near God."

Nothing medical planned this weekend...

Posted Thursday, January 22, 2004 at 11:55 pm

Johnny and I spent the day talking with the oncologist and the surgeon.....and waiting.

Big decisions to be made about saving the leg with the likelihood of the knee being weak and needing lots of attention vs. amputation and hopefully a functionally strong and useful remnant. The institution leans toward saving the limb. Johnny and I are leaning toward amputation and a prosthesis.

Johnny is already planning some great practical jokes for his new leg, we've had some great laughs. Regardless, Johnny will need 4 courses of chemotherapy 4 weeks apart to treat lung metastisis that is likely there but not yet seen on xrays. Good likelihood of complete cure but the chemotherapy is rather harsh...hair loss, low blood counts, risk of infection, damage to the heart.

...Not a whole lot of other choices on the table short of a miracle. God's peace is here, sleeping well, lots of tears and crying out to our Father for intimacy with Him..taking our brokenness to him and asking Him for more of Him...relationship with the Father. We feel your prayers and are so grateful for the outpouring of love..God is real, He is good, and He is faithful. Read Hebrews 12: 7-11 and insert the words "spiritual child training" whereever you see the word discipline (which is what my study Bible says the greek implies). Tomorrow we expect a bunch of tests to complete staging of the tumor.

Thank you for your concern and love..


Posted Thursday, January 22, 2004 at 10:30 pm

Phil and John were amazed by the skill and kind consideration of the people at the cancer center today. They saw the cancer doctor (oncologist) in the morning and the bone/joint surgeon (orthopedic surgeon) in the afternoon.

John is coming to grips with the amputation ahead. The doctors gave him other options involving keeping some of his lower leg and foot, but he would have limitations in his activities and a fragile "knee" that would require constant surgeries to be useful, and ultimately, amputation anyway. Phil has been very honest with the doctors and they have responded candidly that most parents don't come in ready to talk amputation, even though that is the most likely treatment to give John a useful, active limb in the shortest time, and a cure.

Tomorrow will be more tests, but the policy of this cancer center is any painful procedure will be done with the patient well-medicated.  You'll have to ask John next week if he remembers any of these tests!

Chemotherapy will probably be one course every month for four months with a five-day hospital stay each time. The chemo is imperative because almost all osteosarcoma patients have tiny specks of cancer cells already in their lungs that are invisible on a bone scan. The chemo should clear all those specks out.

We're not sure yet about the timing of the surgery. John will probably be in Texas for a couple more weeks.

Phil and I are feeling less in shock, and more of the "peace that surpasses understanding." We are so grateful for the prayers you are making on our behalf. Thank you! Thank you! Thank you!