May 1998

Dear Family & Friends,

It seems very hard to believe that this is the fourth letter that I am writing since Sebastian was diagnosed with cancer. I never would have believed that so much good could come out of something so awful. We have been showered with blessings that even I can't find the words for (that is really a miracle if I can't come up with words!) Thank you just doesn't seem to be enough for all of the unique ways that you have helped us in the last 4 1/2 months.

Medical Update

Our fourth trip to Iowa City was set back a week due to an injury that Sebastian sustained while waiting to be admitted into the hospital. We were actually glad to slow things down a bit so we could catch our breath, celebrate a couple of birthdays and enjoy the beautiful spring weather that we had that week. The nurses tell us that most kids don't stay on schedule because of infections and blood levels that don't return to normal fast enough. Thanks to all of the prayers, that has not been a problem for Sebastian.

The schedule of medical events for June is really packed. On June 9, Sebastian will have another CAT scan to show how much of his tumor is left (pray that it is all gone!), another bone marrow biopsy to make sure that the cancer did not spread and to get ready for a procedure called a stem cell harvest. On June 23 he will be admitted for the harvest. He will be under a general anesthetic and they use a long needle to extract bone marrow from his hip bones several times through out the day. Then they send his marrow to a lab in California to be "cleaned" of any cancer cells.

Surgery is scheduled for July 1. They will remove whatever is left behind and send it to be examined. The surgeons will also determine if the cancer has invaded any of the other organs. This surgery is long and intense so recovery will take about a week. Once the tumor mass has been examined to determine if they removed all of the cells, the surgeons and pathologists will decide if radiation is necessary. Radiation is considered to be sort of a mop up job. If needed, radiation will take place on an out patient basis for five days during the week of July 13-17.

The next step will be an autologous bone marrow transplant-putting his own "cleaned" bone marrow back. This procedure has shown to have a higher rate of disease free lives for children with high risk neuroblastoma. It too is very intense and he will be hospitalized for four to six weeks. The bone marrow is transfused through his central line in much the same way that he receives blood or platelets. This process really wipes out his blood counts and leaves him vulnerable to infection and bleeding. It takes about four to six weeks for the bone marrow to settle back into his bones and begin making new and healthy blood.

Prayers

We are continuing to ask for your prayers for Sebastian's healing. Sometimes I feel so crazy because I have such peace and even happiness about watching this miracle unfold. We recently learned that the medical statistics for the type of neuroblastoma (stage III, n-myc amplified) show a poor rate of survival (10%-30%). I don't tell you this to evoke sorrow or sympathy, rather awe and respect for our Mighty Healer. Before I began my relationship with Christ, I would have shook my head in disbelief if I would have read something like this and thought that whoever was writing this was in denial. I know that I am going out on a limb to say that God will heal Sebastian. There is part of me that is afraid to put this in writing and to tell all of you. A much bigger part of me feels that it is the only thing to do. So here I am-putting my faith and trust in God that he will use the medical personnel and technological advances in the process, but ultimately the miracle will be explained only by God's grace.

Please pray for Sebastian to remain free from infection and for his blood counts to recover quickly during the dates of May 28 through June 1. Our prayers have been overwhelmingly been answered concerning these issues in the past and I thank you so much for lifting him up. Also, please pray for all of the procedures that are going on during June.

I found a passage that I think describes my feelings through all of this - Romans 15:13. Thanks for reading these letters. Thanks for being there for us. Thanks for not showing that you think I may be crazy-even if you might think it!

Family Plans

If all goes as scheduled, we will be visiting Kentucky during the weekend of June 26-28. Our anticipated trip to California has been postponed because of the various medical procedures taking place over the summer. Don't feel sorry for the kids though-Steve, Jr. is spending a week in South Dakota and Stephanie is going to Wisconsin. Steve Sr. and I are planning on stealing some time together without children sometime over the next three months but are not disclosing any information for fear that the kids might find us.

Thank you again for your thoughts, prayers, love, support, cards and letters, money, food, stamps, phone cards, kid sitting, kid hauling, ability to listen to frantic mothers and time.

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