Biz: great babysitter

Tuesday, April 22, 2008

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

9 comments:

Anonymous said...

Our prayers are with you.

We love you.

David & Elaine

Anonymous said...

We are praying that you will be able to keep your eyes fixed on Jesus, the author and finisher of our faith; the Alpha and Omega, the beginning and the end. He is at the starting line, and He is at the finishing line. May God strengthen you through this difficult uphill stretch.
Holly and Craig

Anonymous said...

Please know that you are in our thoughts and prayers!
Fred and Stephanie Woods

Anonymous said...

Great talking with you Tim, we will continue to pray! Neh 8:9 Do not sorrow for the joy of the LORD is your strenth. God Bless,
Joe Gamez

Anonymous said...

We will continue to pray for Elizabeth and her family. We know God controls and we know He loves us and heals us. Keep the faith and all of us also will keep the faith with you. May He bless each one of your family especially during this time.
Louise and Dave

Anonymous said...

Our thoughts and prayers are with you.

Phil & Catherine Hickenbottom

Anonymous said...

This is my first visit to the blog and I am very grateful for it. I am also very grateful to have the opportunity to work with Lydia in drama. If her little sister has anywhere near the courage and determination of Lydia [and I'm sure she does!] she will fight through this. Mine and my families hopes and prayers are with you all...
Fred Yockers

Anonymous said...

Lord, reach down from heaven and touch this young child of Yours with a deep hope and faith and trust in You that is unshakable, and a healing that glorifies You and sings Your praises. Touch these parents who cry out to You for their daughter, touch them in the depth of their beings with a love and grace that allows them to deliver Biz completely into Your hands in perfect trust. Together with them, I stand in prayer, as a parent, as a sister in Christ, and as Your child as well, that the enemy will and is defeated and that Your victory in this situation will be evident. In Jesus' name. Amen.

Shannon

Anonymous said...

Daniels Family,

I have a google alert set up for esthesioneuroblastoma and was sent an alert that led me to your web site.

I was diagnosed with Stage IV C esthesioneuroblastoma in November 2005. Unlike Elizabeth, I was 49 at diagnosis. I had a craniotomy in December 2005 (with clean margins) and 8 weeks of radiation (60 gr) in the spring of 2006. both at Loma Linda University hospital in S. Cal. I consulted with 3 different medical oncologists before I found one that had experience with ENB. Dr. Frank Howard of Wilshire Oncology in Corona CA, put me on a very tough chemo regiment of 13-3 week cycles (9 different drugs, 2 different alternating cycles). Dr. Howard had seen several cases of ENB during his residency and fellowship (Harvard Medical and Dana Farber intern/residency). he put me on a regime consistent with the treatment of a Ewings Sarcoma/PNET. Though there is no standard of chemo treatment for ENB, much of the literature does argue that ENB is in the Ewings Sarcoma/PNET family. I too was cautioned that the regime was so tough that I would be hospitalized for 2-3 weeks out of every month. Fortunately, though it was no picnic, I managed to complete all my cycles without more than 1-2 day hospital stay, though I did have more than 15 transfusions for low white, red and platelet counts. Dr. Howard and his team are exceptional.

All of my follow ups to date have been clear.

As you know there are not a lot of ENB patients, so I would be more than happy to assist any way that I can, including speaking with you or Elizabeth about my experiences and treatment, or to put you in contact with Dr. Howard for a consult. Please do not hesitate to contact me at deblong14@aol.com.

Though I am not a religious person, I wish you and Elizabeth all the best, and will, in my own way, pray for her speedy recovery.

Deb Long

Girls at pool

Girls at pool
poor Garret...