No news is Good News

Since my last post, Todd has had two visits at the Cleveland Clinic, both with great results:  disease and counts are both stable!  The visit for Day 1, Cycle 4, on July 16, 2015,  was one of the 10-hour trial days!  It was a long one!  We went up the night before and stayed at the Hope Lodge again.  His first blood draw was around 7:15 am  and his last draw was about 7:15 p.m. making it really a 12 hour day for us, although the testing runs from 9:00 a.m. to 7:00 p.m.  Since Todd's brother was still in town (Dayton, OH) visiting, we drove straight back home 3 1/2 hours so we could be home to have breakfast with him and his wife on Friday morning before they had to catch their flight home to Florida. 

This was first time anyone had to access his new Power Port (chest port/catheter/central line) in his chest, and the first nurse did not have any success after 2 attempts.  They had to bring in another nurse to try to put the special needle in, with Todd's research nurse, Ashley, and a third nurse standing by to assist!  The problem?  They weren't using a large enough needle to access the port!  We learned through the third attempt and with the advice of his trial nurse, that they need to use a 1" 90 degree special needle to access it successfully.  Unfortunately, the first nurse, in her failed two attempts, only succeeded to inject several syringes full of saline into the chest cavity around the port!  No harm was done, since it was just saline under the skin, but it did plump up the area around the port a bit!  Oh well, they were able to put the needle in and install a connector with a cap so they could use that the entire day for his multiple blood draws.

The results from July 16 visit were:  Hemoglobin 10.3; WhiteBC 2.06; ANCS 1.85 (Low end of the normal range) and Platelets up to 75,000.  Everything but the ANCS are still below the normal range, but for Todd, these numbers mean stability, no transfusions, and no neutropenia!  His bilirubin was still high at 3.0 but within acceptable trial limits. EKG was good! They sent him home with a seat-belt protector to provide a cushion between the bandaged injection site and the seat-belt.  Apparently, some patients with low platelets suffer from leaking through the port injection site after leaving. 

For the most recent visit, Day 15, Cycle 4, he had to drive up to Cleveland Clinic just to do one round of lab work!  Our research nurse tried very hard to get the authorities in charge of the trial, to allow Todd to have the lab work done here in Dayton, instead of Cleveland, but the lab work has to be done at the trial facility.  I had multiple assignments due for school, so Todd ended up driving by himself that day. He left about 7 am, got there about 11 am and immediately turned around and after eating lunch was home by about 3:00 p.m.  I think this is the first time he has been to Cleveland without me in years, but I appreciated that I was able to stay home and work on my schoolwork (which I did for about 15 hours that day!).  With my work and training schedule, there may be times we may need someone to go up with Todd.  I know many have already expressed a desire to go with him, and be sure, we may take you up on it in September!

The preliminary lab work for that visit was about the same. Hemoglobin at 9.9; WBC at 1.99 and Platelets at 62,000. 

So, you can see that no news from us since the last posting, just means that everything is stable!

His next visit will be on August 13, 2015, for Day 1,Cycle 5.  At this appointment he will have to be there early, to have his blood drawn before the in-clinic dosing of the AG-221 at 9:00 a.m.  They also have an echocardiogram, EKG, and another bone marrow biopsy scheduled throughout the day. 

In regards to news of the trial going on At Cleveland Clinic for AG-221, they are still trying to get potential candidates to enroll.  I believe there are only two patients at present, one of which is Todd.  The latest press release from Agios is here: Ag-221 June 2015 Press Release providing a follow-up for the European Hematology Association held in June. 

I'm encouraged that I have heard from several other people who have stumbled upon this blog, or who have begun to follow it, because they have family members that are struggling with MDS too.  I was blessed enough to hear from one reader, who has a family member on the same AG-221 trial.  Its so nice to know that we are not alone and that anything I write may be helpful to someone else!

Personal Notes:
No luck selling our house yet.  We have continued to drop the price, and friends and family are graciously posting our listing and telling their friends.  The once-hot market seems to have cooled quickly.  Two other houses in our neighborhood have also gone on the market for sale, so we have picked up some traffic and calls from that.  Unfortunately, the other houses are not really comparable to ours in terms of space or amenities, so we may not be what they are looking for.

We were about to close the PNC account that was set up for Todd (The Todd Cade Care Fund) because there were monthly fees and no new deposits, but then we learned that there had been some recent deposits and we decided to keep it open.  Thank You to whomever made the donations.  I have been using it for grocery money, etc.  We are truly blessed by your thoughtfulness.

I've started my part-time job, but I have been spending most of my time doing online training courses, in-person training classes, and some on-the-job training.  I had a pretty full schedule last week with training, finishing up a class presentation from my graduate school summer course, and turning in 4 assignments for my workshop class.  I am completely finished with the one summer class, and will finish my workshop class this weekend.  Then I will have a break until August 31, when I begin my final Fall class and Practicum at The University of Dayton Archives. 

The kids are getting ready for school to start soon!  Hannah Lewis has an 18th birthday coming up in a few weeks, and then will leave for college!  Abby has successfully transferred to Wright State University and will start classes the same time I do!  Ellie will begin her Freshman year of high school this month too!  So much to do...

I appreciate your prayers, as I am very discouraged spiritually.  I'm trying to focus on anything good that happens, and not see the bad things as unfair or unjust.  My latest mantra has been that I'm healthy, I have all my needs provided for, and that my children are healthy, and so is Todd!  I can't deny that our lives are drastically different, especially in light of our financial situation and our stress levels.  I feel that some have been so generous while others have been prejudicial; it doesn't bother me, but I  wish I could do more for the kids and make things easier for them.  Sometimes, I feel that people avoid our family, because they know of Todd's illness and our situation, they either don't have the words to say, or don't want to invest emotionally or otherwise in our family or our crisis.  But, as soon as I say this, I can admit that God has raised up others in their place who have brought a meal, made the effort to visit with us, and continue to offer their love and support in so many ways.  Our families have been supportive (I couldn't ask for more!) and I have been blessed with great friends!

I have been trying to use prayer books or orchestrated prayers to guide me in prayer.  So, please feel free to send me your favorite prayers to meditate on!  Thanks.  God bless.

Hickman scheduled to be Removed on July 2, 2015

Todd with Hannah Lewis on graduation day

Todd with long-time friend Barry Wideman

It is hard to believe that it has been six weeks since Todd has needed a blood transfusion!  The AG-221 has been an answer to prayer!

We went up to Cleveland Clinic on Thursday, June 4, 2015, for Cycle 2, day 15 testing.  It was an good day.  Todd had his blood work drawn, an EKG done, and we met with his Transplant Doctor to discuss his progress.  Unfortunately, they were not able to get  his Hickman Central Catheter scheduled for removal on this visit, as previously hoped, but they did it scheduled for July 2, 2015, which will be Cycle 3, day 15, with limited testing.  They will put in a port under the skin on his left side of his chest instead.

The blood work was great!  Todd's hemoglobin climbed to 9.6; his white count to 2.59; his ANCs to 2.18; and his platelets (which have been lagging behind) to 43,000.  While only the ANCs are considered within the"normal range," the counts are still low overall, but they are so much better from where he was before he started the drug!

The last bone marrow biopsy was a little confusing, with the blasts showing at 5%.  Just 15 days prior, they were around 0-1%.  The doctor reassured us that there was nothing to be worried about.  Todd's counts are not necessarily increasing, but rather, this is typical of taking a sample. It can be off by a few percent each time.  She still considers the disease as "stable" and Todd having a "hemeotological response" in the blood with the drug.  Todd's EKG looked normal, and the only side-effects have been nausea, some fatigue, and high bilirubin which has caused some yellowing of his eyes.  It is hard to determine whether the fatigue is actually from the drug or from his disease.  Although his hemoglobin is high enough for him not to need a transfusion, it is still below normal and can cause fatigue.

He did lose more weight (a few pounds) from the last visit, which concerns me.  The doctor was mildly concerned and discussed his nausea and eating habits.  They are not worried, but reassured him that he can eat whatever sounds good to him.  Since his transplant he has lost over 30 pounds and a lot of muscle mass.   

We were blessed enough to be able to stay at the Hope Lodge there in Cleveland, which helps cut our expenses tremendously.  The staff and facilities are awesome, but we have had a few issues with some of the other longer staying occupants who are not as happy with anyone new disrupting their "authority" or routine.  Which is really a shame.

Personal notes:
We had a successful graduation party, although the weather was cold, windy, and a bit wet.  It is hard to believe we have two out of high school and one going into high school!

We've had our house on the market now for about two weeks.  We have lowered the price once to create additional interest and show that we are motivated to sell.  We have had a few showings, but I find myself anxious with the waiting.  Waiting for calls, waiting for showings, waiting to sell.  We can't look for a new place without selling our house.  All we can do is pray and wait.  God has answered prayers in so many other ways, I know this one will be answered in his way and timing too.

Ellie leaves for her 8th grade trip to Washington DC in the morning.  We are blessed that she received a partial scholarship by the travel company, World Strides to be able to go.  We also received word from the Cleveland Clinic Foundation that they are going to pick up a few more months of Todd's COBRA health insurance premiums.  I think this was facilitated by a social worker who came into Todd's room on a prior visit, asking how we were doing, and what needs we had. 

We are so grateful for all our blessing and appreciate your prayers and support as always. 

Day +101: Platelet transfusion needed

Todd went into his local oncologist's office to have lab work done to check his blood counts.  He went in at 11:00 a.m. but didn't get home until after 4:30 p.m.!  His counts were down today: Hemoglobin was 8.9; whites 1.9 (1,900) and platelets at 9,000.  These were the preliminary results and they wanted to verify them, which took a bit longer, but the count was accurate. Since his platelets were under 10,000, he needed a transfusion of platelets.  Sounds straightforward...right?

Well, unfortunately, his local oncologist's office/cancer treatment center does not have a blood bank, so he was going to have to go to a local hospital to get them.  Since it was the day after Christmas, the cancer center was short-handed with only one doctor and a handful of nurses available.  He waited and waited for a doctor to sign an order for the transfusion and to get an appointment at a hospital that had platelets.  By 1:00 p.m. he was still waiting and hadn't had anything to eat, so he finally had to leave to get something to eat and returned with no appointment or orders ready.  After waiting until about 4:00 p.m., the doctor had finally signed the order, but there were no open appointments for a transfusion today, so they scheduled it for 7:00 a.m. tomorrow morning at Miami Valley Hospital. 

While I expected his numbers to drop some after the Vidaza chemotherapy, I wasn't expecting so much difficulty in arranging the transfusion.  So, I called his nurse coordinator, but she too was on vacation.  Instead, I got to talk to another nurse who was filling in for her.  I was concerned that since his next treatment appointment to draw blood work and get blood products wouldn't be until next Wednesday, December 31, 2014, (5 days) that he was going to need a transfusion before then (especially with his hemoglobin hoovering right above the threshold of 8.5, and because of the fatigue he has been experiencing the last two days).  She said that she could secure us an appointment in the Taussig Cancer Center at the Cleveland Clinic on Monday, December 29, but we would have to be there at 8:15 a.m.  Todd, although he was tired of the long wait today, he still wasn't ready to go back to Cleveland Monday.  We would have to go up the night before or leave that morning around 4:30 a.m. to get there! It was her opinion that if he got platelets today, (well, tomorrow now) he would likely be able to wait until Wednesday, but he would very likely need transfusions then.  In the worse case scenario, we would have to be prepared to take him to the emergency room if he becomes symptomatic of falling counts: such as extreme fatigue (where he really doesn't feel like getting out of bed), shortness of breath, and/or confusion.  These signs would indicate a severe need for a regular blood transfusion.  Of course, if he would start bleeding anywhere, he would have to go to the emergency room for a platelet transfusion. 

I hate the idea of taking him to an emergency room which takes so long, and with people who can be contagious and put Todd at risk of catching something.  At least at the Cancer Center at the Cleveland Clinic, everyone else there is in the same fragile situation as Todd and the patients and family members are educated about germ control and how important it is. 

With the stomach/intestinal virus and the influenza circulating, we are trying to be extra careful to protect Todd from catching these.  Please do not visit if you or any member of your household has been sick.  We still have to be very vigilant in protecting him from catching something that may seem minor to us, but detrimental for him.  Although he is excited to see a few new movies that have been released, I have talked him out of going at this busy time of the year with so many sicknesses circulating.  

Todd was quick to point out that his white count had actually gone up slightly from 1.54 on Monday, December 22 to 1.9 today.  This is likely from a positive response to the Vidaza chemotherapy.  Usually, the counts drop and then get a bounce up for a few weeks.  His ANCs (Absolute Neutrophils) of 1.4 were almost within the normal range of 1.5-7.8.  I love that he is so positive and looks for things to be grateful for!

This is a good opportunity to shameless plug blood donation and platelet donation.  Many may recall our experience with the platelet shortage right after his transplant.  This shortage still exists.  If you are healthy and able to donate, please contact your local blood donation center or the Red Cross.  Your donation can save lives and bring strength and help to Todd and others like him who rely on transfusions.  Please note: you CANNOT donate specifically for Todd only; this is too complicated, but it does help keep the blood products in supply. 

I  hoping to post some Christmas photos and a few other tidbits later this week.  Thanks for your support!  Please keep praying: that he would develop a mild case of Graft versus Host Disease to fight off his diseased bone marrow; that he would feel well and keep his energy level up; that the transfusion scheduled for tomorrow goes well and that he won't need to go to the emergency room for more transfusions until his next appointment; that our family would have peace and harmony; that if the timing is right, that God would open or close doors for a job opportunity for me.  I have an appointment to take a skills test for one job opening in January and I've put in an application at a local university who needs a library information specialist that I'm actually qualified for.  I still haven't made a decision whether to return to school or not either. 

My mantra today:  God can do the impossible!!!

Day + 86: MDS is back after Transplant

We received the sad news today from Todd's doctor that the preliminary bone marrow biopsy showed that Todd's MDS has relapsed, finding 6% blast cells. The doctor has recommended that he start Chemotherapy on Monday, December 15. 2014. 

They will be giving him Vidaza, the same chemotherapy he had before going into the hospital for the transplant. He had good results with it then. Those four rounds were able to get him into remission before the transplant. So this is encouraging. 

It is easy to be frustrated when his condition is right back where it was in March 2014, except at that time  he had about 8% blast counts. It's disappointing to go through the entire transplant process, only to relapse before the crucial 100 days post-transplant period. 

We are trying to arrange to have the chemotherapy administered locally like before, but if they can't get him on the schedule on such short notice, we will have to do it at the Cleveland Clinic all of next week. 

What happens beyond this first round of chemotherapy is not known. The doctor is still planning a strategy. It is likely that he may still need a second transplant from his brother's stem cells if all goes well. 

Meanwhile, we are back at the Cleveland Clinic tomorrow for blood work and possible treatment. His blood counts dropped this past week close to the threshold of requiring  transfusions. His white count went as low as 1.45 or 1,450. His hemoglobin was as low as 8.7 and his platelets dropped to 23,000.  Transfusion thresholds: Blood is given at <8 Hemoglobin and platelets given at < 10,000. 

The last few days he has felt achy and nauseated. This could be because of his low blood counts and being off the immunosuppressants. His hip seems to be more sore and achy than any of the past twelve times he has had them done. 

We are trying to stay positive in light of this unfavorable news. Please continue to pray for healing and guidance for us and the doctor. While we still have confidence in her and the transplant team, we are not ruling out a second opinion. There are several treatment options that the doctor can recommend, so we pray that God will guide her choices.