Sorry to keep everyone waiting for news after our doctor appt this week. I was at the hospital both Thursday and Friday for quite a while visiting/helping two different friends whose children were in for care. It was kind of nice being able to focus on someone else's problems for a bit.
On Wednesday, the doctor listed out seven options for us. None of them are a "cure". They are all "trial" drugs/therapies. They are still in test phase to determine how they impact neuroblastoma cells...do they slow the growth, stop the growth or do nothing....all of the options are things to "try" vs doing nothing at all.
The number one option---Senecca Valley Virus--seemed like the way to go and we were told there would be a trial opening in two weeks. Unfortunately, because Lisa is not toilet trained at night and has been having incontinence issues since the antibody therapy she is not eligible for this study. Crazy...who would think our decision to focus on fighting cancer instead of toilet training at night would bite us in the butt!!It was pretty disappointing to hear that she couldn't participate in this study. We've heard good things about it and we want to try everything and anything to beat this miserable disease.
The next option--ALK inhibitor---is most likely the one we will try next. Again, the success of this therapy is limited and not known to cure but hopefully could slow the cancer down until a cure is found. The waiting for a spot to open is nerve wracking because of the waiting, we don't want to give the cancer a chance to take over.
Lisa so far, looks great and seems to recover more and more each day from the antibody effects. I continue to reach out to some of the neuroblastoma support groups and doctors to see if there is anything else we might be doing. We are in good hands at U of M and we are very happy with our care. We continue to read and be on the lookout everyday for the miracle, the thing that will make this cancer a thing of the past. And of course, we continue to pray!
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O Holy St. Anthony, gentlest of Saints, your love for God and Charity for His creatures made you worthy, when on earth, to possess miraculous powers. Miracles waited on your word, which you were ever ready to speak for those in trouble or anxiety. Encouraged by this thought, I implore of you to obtain for Lisa health, strength and to be cancer free. The answer to my prayer may require a miracle. Even so, you are the saint of Miracles. O gentle and loving St. Anthony, whose heart was ever full of human sympathy, whisper my petition into the ears of the Sweet Infant Jesus, who loved to be folded in your arms, and the gratitude of my heart will ever be yours.
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St. Gerard, who, like the Savior, loved children so tenderly and by your prayers freed many from disease and even death, listen to us who are pleading for our sick child. We thank God for the great gift of our daughter, Lisa and ask him to restore our child to health if such be his holy will. This favor, we beg of you through your love for all children and mothers. Amen.
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St. Gerard, who, like the Savior, loved children so tenderly and by your prayers freed many from disease and even death, listen to us who are pleading for our sick child. We thank God for the great gift of our daughter, Lisa and ask him to restore our child to health if such be his holy will. This favor, we beg of you through your love for all children and mothers. Amen.
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Again, I tell you that if two of you on earth agree about anything you ask for, it will be done for you by my Father in heaven. For where two or three come together in my name, there am I with them. Matthew 18:19-20
3 comments:
Hi Linda. Have been thinking about all of you. Will keep up the prayers. On a lighter note, Lily had a wonderful time with Maranda. :)
Mary
Hi Linda and Mike,
Not a day goes by that I do not send my best mojo to you and your family.
Love and light,
Gwen
Linda and all,
HUGE prayers for all of you, especially Lisa. I think of you often. Please, please if Lisa ever wants to play with Camryn, she is free :-) May God send you in the right directions.
Tracy O'Brien
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