Sabbath evening, more calm, less pain, no fever
Dear Family and Friends,
I am writing at 11 pm and tonight I am staying here at the hospital. Dana is taking good care of things at home, feeding the fish, doggies, kitties. John is reading his new Harry Potter book and Dana is probably talking to Ronnie who has a couple days off.
We are settling in after a day of contrasts.
When I arrived this morning I found a very tearful Nan who said she had fever during the night. She was so devastated by the news. The morning vitals found a temperature of 101.3. Dr. Melynk and Dr. Benstock were doing rounds and ordered new blood cultures just to be sure. The common thinking is that when the aid caused the kink in the drainage line the kidneys reacted with the fever. The rest of the day the fevers subsided and this evening she sat up in her recliner for over an hour partially awake and partially nodding off. Now she is back in bed, has 4 mgs of dilautid on board, all her pills including Gleevec and is ready to sleep.
During the day she has managed to gradually feel better and has enjoyed Keanna and Nikki's visit so much. This morning Dana arrived after I did having found both a CD version of the Harry Potter book and the real thing for John. She put the first CD in the laptop and listened to it here. The guy is a great reader and the writer writes a very interesting book. I have never heard or read any of the Harry Potter books so was not aware of the various characters. Later in the morning Dana left to take John's book to him and to relax at home.
Dr. Melynk told us that the compassionate use of AMN will be going through the final review board on Tuesday, then Novartis will refer it to the FDA where it will get a 24 to 48 hour turnaround and then Novartis will ship the drug overnight mail to our doctor. The oncology group have invested an enormous amount of effort into getting this drug approved and we deeply appreciate what they have done for Nan. Meanwhile we are on Gleevec hoping that it will have an effect on the tumor growth, possibly even shrink it.
We have had nice conversations with Jason and Jo, Mary, Pam, Art, Sharon and perhaps more that I don't know about. Nan is now able to care for her own colostomy bag, make phone calls and answer them, eat some food at meal times and drink water, take her pills and rest. She stood just fine tonight when we were getting her into the chair and back into the bed.
Thank you for your many many prayers in Nan's behalf and we hope we have seen the last of the fevers.
We send our love tonight and deepest appreciation of your involvement in our lives.
Our prayers are with Jo and Jason tonight as Jo has experienced some complications today. Baby Timothy is doing well and Jo's mom is staying another week which will be such a huge help.
Love
tim and nan
I am writing at 11 pm and tonight I am staying here at the hospital. Dana is taking good care of things at home, feeding the fish, doggies, kitties. John is reading his new Harry Potter book and Dana is probably talking to Ronnie who has a couple days off.
We are settling in after a day of contrasts.
When I arrived this morning I found a very tearful Nan who said she had fever during the night. She was so devastated by the news. The morning vitals found a temperature of 101.3. Dr. Melynk and Dr. Benstock were doing rounds and ordered new blood cultures just to be sure. The common thinking is that when the aid caused the kink in the drainage line the kidneys reacted with the fever. The rest of the day the fevers subsided and this evening she sat up in her recliner for over an hour partially awake and partially nodding off. Now she is back in bed, has 4 mgs of dilautid on board, all her pills including Gleevec and is ready to sleep.
During the day she has managed to gradually feel better and has enjoyed Keanna and Nikki's visit so much. This morning Dana arrived after I did having found both a CD version of the Harry Potter book and the real thing for John. She put the first CD in the laptop and listened to it here. The guy is a great reader and the writer writes a very interesting book. I have never heard or read any of the Harry Potter books so was not aware of the various characters. Later in the morning Dana left to take John's book to him and to relax at home.
Dr. Melynk told us that the compassionate use of AMN will be going through the final review board on Tuesday, then Novartis will refer it to the FDA where it will get a 24 to 48 hour turnaround and then Novartis will ship the drug overnight mail to our doctor. The oncology group have invested an enormous amount of effort into getting this drug approved and we deeply appreciate what they have done for Nan. Meanwhile we are on Gleevec hoping that it will have an effect on the tumor growth, possibly even shrink it.
We have had nice conversations with Jason and Jo, Mary, Pam, Art, Sharon and perhaps more that I don't know about. Nan is now able to care for her own colostomy bag, make phone calls and answer them, eat some food at meal times and drink water, take her pills and rest. She stood just fine tonight when we were getting her into the chair and back into the bed.
Thank you for your many many prayers in Nan's behalf and we hope we have seen the last of the fevers.
We send our love tonight and deepest appreciation of your involvement in our lives.
Our prayers are with Jo and Jason tonight as Jo has experienced some complications today. Baby Timothy is doing well and Jo's mom is staying another week which will be such a huge help.
Love
tim and nan
posted by Tim Mustard @ 10:59 PM
4 Comments:
At 1:09 AM,
Anonymous said…
Tim,
You mentioned in the BLOG today that you had some phone calls from various people. That seemed to bring some joy to you and was wondering. If the people that called were classified as the phoners would that make you the phony? What can I say. I have an inquiring mind. I am stopping now and going back to my day job.
I see you were busy as usual which meant that I missed the pleasure of seeing you and Keanna at church today. I am pleased with the news that progress is being made on the AMN front and that Nan is much better and stronger. We will pray that she continues to be so.
God bless and keep you and give you peace,
Wes
At 4:27 AM,
Anonymous said…
Good Morning from NC!
We are still enjoying having the kids here. Today we head out for Pigeon Forge and take advantage of the Dollywood "late arrival free pass for the next day" deal. Maybe this time the kids will get their fill of Dollywood. There's never enough time there for them. We have been so busy this year that this is only our 2nd time there this year. Tuesday they fly back to CA out of Nashville on SW Airline's special $99 one way deal.
Sorry Jo is having complications. I'm glad her mother is able to stay another week with her. We pray for a speedy recovery for her. Perhaps she will feel better soon and can make that trip to see Timothy's Grammie and Grandpa. OR If Nan has her way she will be walking out of that hospital soon and making her way to see him!
You certainly have had a lot of people spending a lot of time and effort on Nan's behalf to get her that AMN. No complaint there. Will Nan need to be in the hospital for observation when she starts the new drug? I'm sure there are expectations and apprehensions that come with it.
Well we're off for a couple of days to Dollywood. You have my cell phone number if you need to call for anything.
Take care of yourself ~
Love and Prayers ~ Carol
At 8:03 AM,
Anonymous said…
Hi From "Liveable" Lodi,
Notice we have taken the "Loveable" part out of the greeting, Our City counsel government is starting to show how mixed up they really are and are beganing to sound more like Washington D.C. all the time, What a politically motivated mess government is everywhere. Time for the Lord to come and take Us all Home for sure.
With so many people working for You & Nan to get the new AMN it looks like it will soon be there, hoe We ernestly Pray that it will be the very thing that will bring Nan back to a more normal state of life that She so much deserves.
Monday We began a very full week of Tests, Labs, Scans, Screenings,Dr's , Attorneys and start it all off with a Funeral Service for a long time friend that We lost last Thursday to Bone Cancer after nearly a Year of suffering He sleeps now waiting on the Lord's return. He was 65.
We are Praying for Good results and favorable reports on all fronts but are praying that the Lord's will be done in all things.
We have added Jo to our Prayer list and are hopeing that You will be able to See & hold the little one very soon.
Have a good Sunday filled with improvements of many kinds.
Love & Prayers,
Bob & Carrol.
At 8:44 AM,
Anonymous said…
Hi dear Mustards, The blog sounds more encouraging with the AMN to arrive soon. Seems like you had a relaxing Sabbath Day.
Here's a little message to Carol and Roger: Say hi to Cheryl and Todd for me. Cheryl and I used to be at SAA together. Last Sabbath at our little church here in Lincoln we had John and Dolly Jackson and Ron and Laurie Johnson visit...they are also SAA people who Cheryl will know. Cheryl is a special person and had such a great PE program for the girls while at SAA and Todd came and helped her many times. Our granddaughter (Jeni) was in her classes and enjoyed volleyball the most.
Gerry played his trumpet for special music at church. Later in the afternoon we went with the Sonshine Band to the Lincoln Manor and had music and a nice time visiting with the elderly people there. One lady played her tamborene and told us how she loves to go to the Indian casino...ThunderValley which is close by. What a kick she is! Adds spice to the place.
Have a good day and we hope Nan gets stronger and will be able to make the trip to see Baby Timothy very soon. We will also add Jo to our prayer list so she feels better and can enjoy her new baby. Having a baby is stressful to the body!
Love, Barbie
Post a Comment
<< Home