It always seems to me after a MRI report life turns into a bit of a saga for a few days. Apologies for leaving yet another cliffhanger of a blog! MD Salacz read the MRI on the 23rd of February. The space on the side of the tumor cavity that we were watching before seemed mostly unchanged from the last MRI and the tumor cavity actually looked smaller. This was a praise. Another tumor spot that they had been watching though had gone from 4mm to 11mm. This doesn't seem like much of an increase to some, but significant when you are dealing with the brain. Our scans were whisked off to Duke and then we had the weekend to wait and be patient.
Our doctor is always calm. He likes to say he doesn't get overly excited about the good news overly depressed concerning the bad. This coupled with a peace the the Lord provided, gave us a rather calm weekend and were able just to wait until Monday. We were waiting to hear if Duke had any new cancer protocols or trials in which we could enroll and if not we would continue in Kansas with the Avastin treatments and switch to another drug besides the CPT-11 Will had been receiving. MD Salacz felt the Avastin was still effective since so much else on the scan looked promising and wanted Duke's input.
Monday rolled around and we expected Duke to call by 8am. Ruth wouldn't have minded the early wake up since she was driving to work and had started calling people at 7am. You have to start early if you want anything accomplished with the medical system!! It ended up that most of the medical staff, specifically our contact, convieneiently developed a stomach bug that week! Ruth called 3 or 4 other contacts and just waited for a call back. By the end of the day there was nothing and Will was scheduled for Chemo at St. Luke's the next day. Since we didn't want to just sit around and do nothing to fight the new growth we had tenatively scheduled a treatment, but it was important to hear from Duke prior to administering any more chemo in case that would disqualify Will from one of the trials. We called MD Salacz and he started to call Duke as well.
Tuesday morning came and we postponed Chemo until Wed in order to hear from Duke. A Doctor called around 3pm our time to tell us they had a chance to review Will's scans and Will's disease had progressed. When we heard over the phone that the tumor was bigger and close to the brain stem, not in the brain stem just close, I think it hit home more for both of us. It was just sad. But there was not much time to grieve as they were faxing us the consent for a new trial at Duke with which they had some success with in the past and thought Will would be a good candidate. The new drug is called Panzem and Will would be taking it orally three times a day. She didn't know many of the specific rules and regs of the trial and not knowing when we could actually go to Duke we kept our appointment to receive the Avastin her in Kansas City on Wed. We still needed to contact the head of the trial because if we were going to have to wait for weeks to recive this treatment we wanted to do something in KC now!
To make a long story short the appointment for Will's chemo was moved to Thursday and in God's providence we found out 15 minutes before Will was to leave the house that if he took this next treatment of chemo it would disqualify him from anything at Duke AND that they would get us into an appointment the next week. We felt like then we could at least breathe out knowing we would be doing something physically to fight the growth along with all the praying that had been done the past few days.
So we are heading out to North Carolina tomorrow. Ruth's work has been understanding and given the time needed to make the trip. We will be in the clinic on Tuesday being screened for eligibility in the trial and then hopefully Will is going to take his first dose of Panzem on Wednesday. We say hopefully, but we are praying that whatever the Lord's will is in this situation we will be submissive to. Including just coming home if the trial is not in His plan for Will's next treatment step.
So there is a long blurb. Our flight takes off at 8am. Ruth has spent some time this past weeks just having some sad days just hating the fact that Will is sick. It's been a bit of a battle at times to remember God never promised heaven in this life but instead He 'is preparing a place' and in that place there will be no more sickness of sorrow and the Lord is sovereign.
I just attached some photos at the end. Some are from game playing, others from a gorgeous day at the park when we took Will's nephew Caleb for his first playground experience. The one's where there are a lot of kid's were taken at none other than Applebee's where Will and Ruth both acquired their waiter and waitress skills, separate cities, ten years apart but same restaurant. We introduced Will's older brother's family to our favorite dessert the Maple Butter Blondie. UMMMM!!
All for now. We continue to pray in all things that the Lord be glorified!
"But I have trusted in Your mercy; My heart shall rejoice in Your salvation. I will sing to the Lord, because He has dealt bountifully with me." Psalm 13.5-6
Monday rolled around and we expected Duke to call by 8am. Ruth wouldn't have minded the early wake up since she was driving to work and had started calling people at 7am. You have to start early if you want anything accomplished with the medical system!! It ended up that most of the medical staff, specifically our contact, convieneiently developed a stomach bug that week! Ruth called 3 or 4 other contacts and just waited for a call back. By the end of the day there was nothing and Will was scheduled for Chemo at St. Luke's the next day. Since we didn't want to just sit around and do nothing to fight the new growth we had tenatively scheduled a treatment, but it was important to hear from Duke prior to administering any more chemo in case that would disqualify Will from one of the trials. We called MD Salacz and he started to call Duke as well.
Tuesday morning came and we postponed Chemo until Wed in order to hear from Duke. A Doctor called around 3pm our time to tell us they had a chance to review Will's scans and Will's disease had progressed. When we heard over the phone that the tumor was bigger and close to the brain stem, not in the brain stem just close, I think it hit home more for both of us. It was just sad. But there was not much time to grieve as they were faxing us the consent for a new trial at Duke with which they had some success with in the past and thought Will would be a good candidate. The new drug is called Panzem and Will would be taking it orally three times a day. She didn't know many of the specific rules and regs of the trial and not knowing when we could actually go to Duke we kept our appointment to receive the Avastin her in Kansas City on Wed. We still needed to contact the head of the trial because if we were going to have to wait for weeks to recive this treatment we wanted to do something in KC now!
To make a long story short the appointment for Will's chemo was moved to Thursday and in God's providence we found out 15 minutes before Will was to leave the house that if he took this next treatment of chemo it would disqualify him from anything at Duke AND that they would get us into an appointment the next week. We felt like then we could at least breathe out knowing we would be doing something physically to fight the growth along with all the praying that had been done the past few days.
So we are heading out to North Carolina tomorrow. Ruth's work has been understanding and given the time needed to make the trip. We will be in the clinic on Tuesday being screened for eligibility in the trial and then hopefully Will is going to take his first dose of Panzem on Wednesday. We say hopefully, but we are praying that whatever the Lord's will is in this situation we will be submissive to. Including just coming home if the trial is not in His plan for Will's next treatment step.
So there is a long blurb. Our flight takes off at 8am. Ruth has spent some time this past weeks just having some sad days just hating the fact that Will is sick. It's been a bit of a battle at times to remember God never promised heaven in this life but instead He 'is preparing a place' and in that place there will be no more sickness of sorrow and the Lord is sovereign.
I just attached some photos at the end. Some are from game playing, others from a gorgeous day at the park when we took Will's nephew Caleb for his first playground experience. The one's where there are a lot of kid's were taken at none other than Applebee's where Will and Ruth both acquired their waiter and waitress skills, separate cities, ten years apart but same restaurant. We introduced Will's older brother's family to our favorite dessert the Maple Butter Blondie. UMMMM!!
All for now. We continue to pray in all things that the Lord be glorified!
"But I have trusted in Your mercy; My heart shall rejoice in Your salvation. I will sing to the Lord, because He has dealt bountifully with me." Psalm 13.5-6
Isaiah 41:10:
So do not fear, for I am with you;
do not be dismayed, for I am your God.
I will strengthen you and help you;
I will uphold you with my
So do not fear, for I am with you;
do not be dismayed, for I am your God.
I will strengthen you and help you;
I will uphold you with my
righteous right hand.
2 comments:
Ruth -
Hey. I am not sure how often you check your comments or if you even read them. I just wanted to let you know that I am thinking of you and praying for you guys. I have a Dr. I would like to suggest to you - that we used in Bobby's treatments. They are a amazing group of people. If you get a chance e-mail me or give me a call. amandajones1212@aol.com or 731-697-0396.
Praying for you - Hones
Thanks for the update...we continue to pray for healing and just for God's plan to me made clear to you both. Hang in there!
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