Out with Old (Hickman) and in with the New (Port)

Todd before his surgery procedures.

I apologize for not blogging sooner!  I am back in graduate school, which along with everything else, has left me very little spare time.

Todd went into surgery on Thursday, July 2, 2015, to have his Hickman Central Catheter removed and his new chest port put in.  There were  no problems with either, however, Todd was considerably sorer than anticipated.

On his appointment day, he had his blood drawn, for the trial study and to see if he needed platelets during the surgical procedures. His counts were stable.  His hemoglobin was 9.9, Whites at 1.96, ANCs at 1.45 and his platelets were at 67,000-which meant no platelet transfusion was needed.  He didn't see his doctor that day, so besides the surgery, it was a short day.

Saying Goodbye to the Hickman!

He experienced considerable pain around the insertion point of the port catheter and around the catheter itself for the first 4 or 5 days after the procedure.  He has had some severe bruising.  He likened the pain to being hit with a hammer to the neck and chest. He wasn't allowed to drive for 24 hours or lift anything heavy, and was even advised not to make any major decisions, apparently because the type of anesthesia they used could impair his memory temporarily.  They were able to administer the anesthesia through the Hickman catheter, before they pulled it out. 

The type of port they put in was a new variety that the hospital was using for a limited time.  It is called a Power Port.  It doesn't need flushed with Heparin every six weeks, but instead every 3 months, if it is not in use.  He is healing up and feels little pain, although there is still some lingering bruising.  He can now shower, go to the pool, and even shot a shot gun!  The radiologist asked him if he was right handed and would he ever like to shoot a shotgun in the future!  If so, he was going to put the port in the left side of the chest, which was the plan anyway.

A few days after the surgery.  Hickman removed on left.  Insertion of new port on the right.

In regards to the trial study in general, we found out that another person was enrolled in the study, making the total 3 now at the Cleveland Clinic, however, the second patient had just left the study because of the nausea he was experiencing.  Although Todd is still suffering from the nausea and elevated bilirubin, he feels it is tolerable knowing that he really doesn't have another choice of treatment.  He has lost another 5 pounds, making his total weight lost since September, 2014 nearing 40 pounds.  I am still very concerned about this, but it is impossible to control some one's eating.  We are encouraging him to drink his Ensure shakes whenever he can, and try to find tempting foods for him to eat, that don't upset his stomach.  He has the option of eating first, then waiting two hours to take his AG-221, and then waiting another hour after.  They wanted him to take his medication at 9:00 a.m. each morning, so this would mean getting up and eating before 7:00 a.m., which just isn't realistic for how he feels (he likes to get extra sleep in the morning).  The drug study does allow for a 6 hour window to take the medication, so he does have the option of eating first, as late as 1:00 p.m. and taking the drug by 3:00 p.m.  So, he is experimenting with this option when he feels like it. At least we know that the nausea isn't limited to just him, but that other patients are struggling with the same side effect. 

His bilirubin seems higher on some days than others, if the yellowness in his eyes are any indicator.  On Thursday, his eyes were so yellow, that all three kids, at different times said something to him about noticing it.  So, I spoke to his research nurse so they could make a note of it.  At his last visit his bilirubin count was at 3.4.

We leave for Cleveland again on Wednesday night, to be there early Thursday morning for another 10-hour of blood draws for Day 1 of Cycle 4.   No bone marrow biopsy will be done, until the beginning of Cycle 5.  It is hard to believe he has been on the drug for 3 full months now!  It has been so great that he hasn't had to have a transfusion since then!  We are grateful for that, but even so, going to Cleveland Clinic every two weeks has been tiring.  We were supposed to be able to go only once a month after Cycle 4, but apparently that isn't the case.  They still need labs drawn, and our research nurse asked if he could do it in Dayton, but he has to have done at the research facility, Cleveland Clinic in his case.  There is a new amendment of the study coming out, which would give the patient a 3-day window to have testing done, so that would allow us more flexibility in going to Cleveland.  She thinks he can be added to this amendment, which would be a bit more helpful, if I have to work on a set testing day.

I asked if there was another amendment of the study, that provided a lower dose, or allowed Todd to take the drug with food, but there isn't.  Instead, the latest patients signing up for the drug have to go on a 650 mg. dosage of the drug!  Todd only takes 200 mg. per day!  I can't imagine how many more side effects this patients will have to deal with!  Our nurse said that we picked the best time to get on the study, when the dosing was still lower.  Thank you Lord!

Personal News:
For me, things have been busy even in the summer.  I'm starting my sixth week of classes this week.  Just two more to go!  However, I also start my two week plus workshop this week too!  So, I will have some overlap in assignments, readings, and projects.  I'm having a hard time now staying up with weekly assignments, so I'm afraid I'm going to have to find more time.

My practicum is officially set up for Fall Semester, beginning August 31 at the University Archives at The University of Dayton.  I have to complete 150 hours within the fall semester which ends in December.

I did get hired at CVS as a part-time pharmacy technician, but haven't started working yet.  I had have an FBI background check and drug testing completed first, before I can begin training.  I'm going to try to get my practicum hours done on Mondays and Tuesdays, and be available for work the other days, although my supervising Archivist as UD is very flexible about what days I complete my work.

We still haven't sold our house, which has been on the market now for just 7 weeks now.  However, property taxes are due and our funds continue to deplete.  I just can't get to working fast enough.  I've thought about postponing finishing school, but Todd feels I need to finish in order to get the best paying job once I have my Masters.  God is still providing, with help from our church and friends and family.  We continue to market the house and lower the price, knowing that we really need to sell by the end of the summer.  I am thinking about setting up a "Go Fund Me" account, because we haven't had much response to the PNC account.  Neither Todd nor I really have felt comfortable setting up this kind of account or asking anyone for money.  We would rather trust God, as he lays it upon the hearts of people.

I have been working hard to get Abby and Hannah Lewis ready for college.  Abby is going to transfer from the University of Cincinnati to Wright State University and Hannah Lewis leaves for Columbus on August 20.  We have worked on financial aid and loan paperwork this past week.  We still need to do some shopping for the dorm room and are in need of a new MacPro computer for school.  Both will need books, etc.  Ellie is still preparing for Volleyball tryouts, which will be August 1.  She also has been working on her Honors English pre-class reading assignments, due the first day of school!

If anyone has some experience with the mechanics of a riding lawn mower, we could use some help getting the snow throwing attachment off of our zero-turn lawn mower, and help installing the mowing deck.  If we can mow our own grass, it would also help us save some money.

I'm really feeling helpless on many issues, and I'm trying to remind myself to trust God's timing.  Thank you all for your love and support.  I will try to get another blog posted soon after this week's appointments.