Transplant Date Scheduled

Before Todd's third round of chemotherapy we drove up to The Cleveland Clinic on July 9, 2014 to meet with his transplant doctor to discuss setting up the transplant. While the Vidaza had some positive results in lowering Todd's blast counts, we realized that this was no long term fix. We understand that some MDS patients receive monthly rounds of Vidaza for 12+ months or more, but many or most of these patients do not have a bone marrow donor match or their health is not stable enough to undergo a transplant.  We have accepted that this is not an acceptable treatment regimen for Todd.


Now that we are resigned to have the transplant, all the scheduling is set.  Staging, or the pre-screening testing that Todd needs to undergo with be done this Thursday and Friday, August 7 & 8, 2014.  During this visit, Todd will undergo a chest x-ray, lab work, bone marrow biopsy, an echocardiogram, an electrocardiogram, and a pulmonary function test.  In addition to testing we will meet with a transplant nurse, social worker, and an insurance specialist.  It is during this time that we can make housing arrangements for our extended stay once Todd is released from the hospital.  To get on the waiting list at The Hope Lodge, a nearby house for cancer patients, his social worker has to make the call. 

During this short overnight visit, we will be staying at a hotel about 20 minutes away from the hospital that gives bone marrow patients special lower rates (because The Cleveland Clinic helps to subsidize the rates) to gauge whether I will spend the nights there while he is hospitalized or not.  If I'm not comfortable being away from him, even for short periods, I may just stay in his room those 4-6 weeks.

 Todd's brother, his perfect match bone marrow donor, has also scheduled his Donor health screening for one afternoon at the Cleveland Clinic.  Todd's dental cleaning and assessment with our local dentist is also set.

I have included a scan of his calendar explaining how the days will be counted in terms of the transplant schedule.  On the day he is admitted, September 8, 2014, a count down begins (Day -9) until the date of the actual transplant, where he will have his brother's donor bone marrow injected, which will be considered Day 0 on September 16, 2014.  Those eight days: days -9 through -2 will be when he receives the intensive chemotherapy drugs that will kill all of his own bone marrow.  Day -1 will be a day of rest before the infusion on Day 0.  The transplant itself will only take about 20 minutes!  His brother will be there that morning to have his bone marrow harvested and then it will be brought up right away for infusion through his Hickman chest catheter.  This will likely occur in the late morning, since the donor is a family member (this makes the process happen faster than a non-related donor).  The days after the transplant will be counted in positive numbers: day +1, +2, etc.

Besides going up for staging this Thursday and Friday, Todd has an appointment on August 29, 2014 for lab work, an assessment, and a meeting with the pharmacist to go over the numerous medications we will be dealing with.  Another visit will take place September 4 and 5, 2014. The first day, Todd will have his Hickman chest catheter surgically inserted, and on the next day I will meet with the nurse to learn how to change the dressings, clean the catheter tubes, and care for the insertion site. 

Right now I am in the process of creating packing lists for me and Todd.  Since I'm not sure I will be able to come home during those 100 days, I'm debating whether to pack for the entire time or not (100 days).  We will be there beginning in the fall, but Cleveland can get colder in November and December.  I'm still figuring out how I will get important mail, whether to have it sent directly to the hospital or have my mom send it up to me in a batches from time to time.  I've got a list of special things I need to buy for Todd, like an electric shaver, since he won't be allowed to use a regular razor. 

In addition to creating lists for me and Todd, I am also preparing a list of things I will need to leave for my mom and a list of the girls' schedules and activities. 

I have had some ask about coming up to visit Todd or to bring the girls.  This would be nice.  I'm just not sure how much company he can have and when he can have it: pre-transplant, post-transplant, while in the hospital, or after he has been released.  This will have to be addressed when I have more information. 

Thank you for all the prayers and support.  We will really need them right now.  Things are a bit overwhelming with all the preparations that need to be made for our stay at Cleveland, the girls' needs here, and getting our oldest daughter moved into her college dorm later this month.  I will feel better once the girls get into their school routines before we leave. 

I'll post more updates after our visit this week. 

Long-term Treatment Planned: Bone Marrow Transplant September 2014

PAfter discussing the upcoming treatment for Todd with his Bone Marrow Transplant Doctor at the Cleveland Clinic on Wednesday, July 9, 2014, we are finally all in agreement to proceed with the Bone Marrow Transplant the first week of September 2014.

We have been anticipating this decision after his bone marrow biopsies revealed chromosomal abnormalities earlier this year.  While we feel confident about the decision, it is still overwhelming.

The doctor suggested doing the transplant next month and staging this month, which would mean only one  more round of Vidaza, however, we asked to wait until September 2014 for the benefit of our entire family.  Our eldest daughter leaves for college and moves into her dorm room on August 20, 2014.  We felt it was imperative that we be there to help her make this life-changing transition.  Our other two daughters begin school on August 26, 2014, which is equally important for us to be home for.  We would feel more comfortable getting the girls situated into their school routines before taking off to Cleveland for the required 100 days or so.

In light of pushing the transplant back one month, it is very likely that Todd will do a fourth round of Vidaza in August to keep his blast counts down. Round three is already scheduled for next Monday, July 14, 2014.

Staging, which consists of two days of meetings and a thorough medical exam and tests, will be done mid-August.  Todd's biological brother Tom, who is the perfect-match donor, will also undergo a thorough medical exam for one day in August too.  I would like to pause and say how thankful we are that first: God has provided Todd with a perfect match who is a family member, and second: how thankful we are to his brother Tom whom is willing to do this for Todd.

Todd's staging will include tests like:  blood tests for infectious diseases and organ functions, an EKG, an Echo cardiogram, chest x-rays, pulmonary function tests, and possibly a CT and a PET scan.  Another bone marrow biopsy will be done too, to evaluate blast counts pre-transplant.  And, if this wasn't enough, he also has to see his dentist to have him perform a cleaning, and dental evaluation clearing him of any abscesses, lesions, severe dental problems that will need fixing within the coming months, or any other infections in the mouth or gums.

Meetings will include a two-hour meeting with the Nurse Coordinator who will talk to us about the intensive chemotherapy and what to expect during the whole transplant process.  Then we will be spend about 1-2 hours meeting with a social worker, who will help deal with concerns like housing for me during his hospitalization and housing for both of us once he is released.  I will likely stay in his room or in a nearby hotel.  While he will only been in the hospital 4-6 weeks, we have to stay within one hour of the Cleveland Clinic for the remainder of the 100 days.  We are hoping to stay in the nearby Hope Lodge, courtesy of the American Cancer Society, but we have to get put on a waiting list via the social worker for this to happen though.  The social worker will also address any concerns we have with the emotional stress and discuss coping mechanisms we can use to get through the transplant.  We already returned a questionnaire that outlined our family and our needs in the upcoming months.

We were sent a three-ring binder of information to "study" before the transplant.  We are "required" to read the first three sections before the meetings for staging.  Some of this information includes the Central Venous Catheter that they place in his chest for administrating medication and taking blood samples.  Information on how to change the dressings, clean the tubes of the catheter and how to give him subcutaneous (under the skin) injections of medications was also provided for study.  Phone lists, Cleveland area maps and guides, hospital maps and guides, packing lists, medication information, follow-up care, a chapter on Graft vs. Host disease, and staying healthy guides were also included for reading.

I will elaborate as I learn more in future posts, but in a nutshell, Todd will be admitted and receive 8 days of intensive chemotherapy that will kill all  his bone marrow (along with healthy cells).  The following day, his brother will be put under general anesthesia where he will undergo the bone marrow harvesting from his hips.  Todd will receive that bone marrow the same day.  Then the fight begins for his body to accept the new bone marrow and "graft" into his system. From then on, Todd will have the same DNA as Tom.  There is a chance he could develop "Graft v. Host disease" where the cells in Todd's body try to kill the new bone marrow thinking that they are fighting off an invader.  There is no re-do if this develops into a severe case of Graft v. Host.  Then, he will also have to fight everyday infections that his immature immune system won't be ready to fight off, at least not for some time.  Four-six weeks of hospitalization will be followed by weekly appointments and trips to the ER if he develops even so slight of a temperature of 100.4 degrees.  If all goes well, he will be released to go home after the 100 days or so.  We are hoping this will be in December before Christmas.  Then the next six months to a year, he will still be developing a stronger immune system, taking medications, and fighting any other complications.  It will be unlikely that Todd will be able to return to work for 18 months to 2 years, but this is just a guideline.  Long term or even lifetime complications from the chemotherapy are always a possibility.  

Not only is the preparation for the transplant overwhelming, but preparing for the needs of daughters while we both are gone is also a major concern.

Questioning our decision was even an issue. The first few days after the appointment, we found it easy to second-guess our decision to go forward with the bone marrow transplant.  It is easy to read some one's blog who went through a transplant and had complications afterwards or to even look at any negative statistics.  The doctor said, our lives would be "different" after the transplant.  I asked in what ways, and she told us that Todd could have to remain on antibiotics and/or steroids for a long time afterwards.  Some people have to take them for life.  While this isn't a certainty for every patient it is a concern: How will his "quality of life" be post-transplant one year, five years, ten years, or twenty years out?  But, we must remember that God is in control and has provided everything we need NOW for the transplant and that without it our lives would be in constant limbo living for the next bone-marrow biopsy and blood test every three to six months. Or even worse, having the MDS develop into full-blown Acute Myeloid Leukemia which could kill him quickly or make any chance of treatment difficult or impossible.

Yes, it is going to be a long journey, but we are know it is the right one to traverse.  Yes, the thought of it and discussing it can be so raw emotionally that I can't help but cry, but I know it will for the best.

Your prayers and help are going to be called on for the next six months to a year! While our goal is be home before Christmas 2014, the recovery will not be over.  Things will still be precarious for the following six months or more.

I know my main request for help will be with our three daughters.  For those who live near us, it is you I will appeal to most! I'm sure my mom, who will be staying with the girls, would appreciate the help as much as it will ease my mind to have help with things like: rides  to volleyball practices and games, rides to Cleveland so the girls can visit safely, and homework tutors (likely in Algebra!), or for someone to encourage to Abby, living away from home for the first time.  

For Todd: notes and cards of encouragement, maybe care packages of homemade goodies when he gets to the point he can enjoy them.

I'm not real sure just yet of what we will need, but we will appreciate anyone who will just be with us in spirit.

Results from Round 2 of Vidaza

Well, we were shocked how much better the second round of Vidaza went.  The nausea and fatigue were not as bad.  Todd still experienced some stomach upset, headaches, and fatigue, but it was more manageable.  Why?  What was the difference?  We are not sure.  Todd's nurse said there could have been more "nerves" with the first round than the second, making symptoms worse.  Or, he could have simply adjusted better to the treatments, or there was a slight chance he had a stomach virus during the first round.  I guess we will never know.  We are just pleased with the lessened severity of his symptoms with round two.

The blood work results post-round two show his counts have come up from the very low counts the previous Monday, June 16.  Here is a comparison of his CBC blood counts from the past few weeks to help give you perspective:

Date:                   June 16                June 23                   June 30                July 7
                          Day 1;R2               Day 6;R2              1wk post R2       2 wks post R2

Whites                 1.2                    n/avail.                             3.0                    3.2
Reds                    4.19                   n/avail.                            4.14                  4.21
Hemoglobin        11.2                   n/avail.                           11.1                   11.4
ANCs                      .4                   n/avail.                             1.7                    1.8
Platelets                75                     n/avail.                            29                     35

As you can see in this chart, his platelets did not get as big of a boost this round as in the first round which rebounded to 136 at one point and then started dropping from there.  Once again, all these counts are below the normal range. 

During his check-up this past Monday, July 7, 2014, his local oncologist expressed his desire for us to talk to his bone marrow transplant doctor at the Cleveland Clinic so we can discuss and re-evaluate where we stand.  Cleveland called us the same day and set an appointment for tomorrow, Wednesday, July 9, 2014 in the late afternoon. 

Some of the issues to be discussed will include: the time table for scheduling the transplant, how many more rounds (just round 3 or a round 4 too) of Vidaza will be done before transplanting, scheduling another biopsy to check on the blast count, etc.

I will post the outcome and thinking from this upcoming visit by the end of the week.  Meanwhile, round three of Vidaza is already scheduled to begin next week starting Monday, July 14, 2014. 

Second Rount of Vidaza going well.

Today, Thursday, June 19, 2014, was the fourth day of the second round of Vidaza treatments.  Todd has surprisingly responded much better this time around.  He has had less nausea and has been able to eat much more than last time.  While he is still experiencing digestion and stomach cramp issues, it is more tolerable than the nausea. 

One last treatment tomorrow (Friday), then two days off, with new blood work and treatment resuming again on Monday, June 23, and ending on Tuesday, June 24, 2014.

We can do this!

2nd Round starts with bad news

Well we went in for the first treatment of the second round of Vidaza on Monday June 16, 2014 feeling pretty relaxed, only to be hit with disappointing blood test results.

Before beginning treatment they take his blood to check his white, red, platelets, ANCs, among other things. We waited for the treatment to start for some time until Todd's nurse came over and told us that Todd's blood counts were very low and she was waiting for his local oncologist to review the blood work results and make a decision whether to proceed with treatment today. The concern was that blood counts typically drop the first week of treatment.  If they are already very low to start with, they are very likely to go even lower, maybe dangerously lower. The doctor needed to evaluate this risk first.

We were in shock. We were still riding the high from the news of his elevated platelets. 

We quickly learned that the platelets had already started to drop before treatment because on his last appointment his local oncologist was looking at his results from the prior week without waiting to see that day's result before the consultation. In reality, his platelets had already dropped from their all-time high of 136,000 on June 2, 2014 to 85,000 on June 10, 2014.  While this number was still good, it showed a quick decline.

So, on the day he started this round, his platelets had dropped to 75,000, but this was not as bad as his white blood count that had dropped from a 3.5 on June 2 to 2.0 and his Absolute Neutrophils (ANCs) had gone from 2.4 on June 2 to 1.1 on June 10 to .4 on the first day of this treatment, June 16, 2014.  All his numbers had dropped below the normal range lows  according to this day's results.

He was in disbelief.  He questioned the results and I reassured him that there was no manipulating blood counts.  We both quickly realized that the Vidaza's positive results were short lived.  I began to cry realizing that the Vidaza was not likely to keep him a state of "remission" for long.  The need for the transplant was still there if not more so.  I think that fact became a true realization at that point: the transplant was inevitable.  

While sitting there, Todd looked at his messages from his transplant doctor at the Cleveland Clinic.  The cytogenics results were back confirming the same chromosomal abnormalities and deletions.  It was her desire to continue the Vidaza for at total of 4 rounds.  I said he would likely be ready for the transplant after numerous rounds of feeling bad from the Vidaza and knowing the results would be short lived.

The nurse returned with the green light from the doctor to begin treatment. While the doctor was concerned that his blood counts were very low, he wanted to continue treatment with the hope that eventually the Vidaza would begin working and would bring his numbers up quickly after the initial first-week dip.  She began with his pre-treatment medication of the Aloxi (which he will get every other day for nausea) and then began the 30 minute treatment of Vidaza.

Blood work will be repeated next Monday. 

Appointment with New Oncologist: Vidaza follow-up

Todd met with the new local oncologist on Tuesday, June 10, 2014.  He was so pleased!  The oncologist's bedside manor made it easy for Todd to discuss his medical condition, current and future treatment.

First, Todd had his blood work done, which showed another all-time high platelet count of 136,000 which is completely in the normal range.  His other CBC counts were about the same but stable. 

The local oncologist reassured Todd that fatality rates for allogenic bone marrow transplants with a donor that is a perfect match/family member are less than 10% versus the higher 20-30% mortality rates were we told initially.  Those rates were too high and made made us uncomfortable doing the transplant any sooner than absolutely necessary. 

The opinion of this oncologist is that Todd is in "remission" right now with the Vidaza treatment.  He will gladly work with Todd's doctors at The Cleveland Clinic to administer the additional rounds of Vidaza however they prescribe it.  He is also willing to work with Todd during and after transplantation. 

We want to thank our friend Bud Mays who recommended him to us.  We feel very grateful for this doctor. 

So, where do we stand?  A second round of Vidaza starts Monday. Todd is going to do the same 5+2 day outpatient treatment. They discussed why this local group of doctors only schedule 5 days of treatment instead of the prescribed 7 days. 

He stated that 7 days were not well tolerated by most patients because by waiting over the weekend to do the additional 2 days on the following Monfay and Tuesday makes it like having the treatment for 9 days (since the chemo is still in the patient's system over the weekend).  But he is willing to do whatever his transplant doctor prescribes. 

Todd's MDS is still there even though the word "remission" was used. It's not going away permanently. There is a good chance it will stop responding to Vidaza at some point. In addition, it is tough going through the treatment every 28 days. The only long-term cure is the bone marrow transplant. 

The new local oncologist called these pre-transplant treatments of Vidaza "pre-loading" or getting the body in the best condition (lowering blast counts) to help insure a successful bone marrow transplant. 

Todd is well rested from vacation. We will enjoy celebrating Father's Day tomorrow and be ready for the first dose of the second round of Vidaza on Monday, June 16, 2014. 

The Vidaza is Working!

Two positive results are giving us great feedback from Todd's first round of Vidaza. First, he had bloodwork done this  week, showing his platelets had bounced back from an all-time low of 16,000 the week after the chemo treatment to a record high of 79,000 three weeks after treatment. 

Second, we got the bone marrow biopsy results back today showing an unbelievable result of a 0% blast cell count!    Cytogenetic testing results were not back yet but it is obvious that these results are showing us that the Vidaza is working. 

While this is great news it doesn't mean he is cured or anything like that. It changes his risk assessment and treatment options. At this time, the

Bone marrow transplant is still the only "curative" treatment. However, the Vidaza is halting the progression of his MDS for now. 

So we do we go from here?  Well for starters we meet with the new local oncologist on Tuesday, June 10, 2014. Then he will begin a second round of Vidaza that next Monday, June 16, 2014. 

Why another round? Well usually 3-4 rounds are the "prescribed and preferred"  method of treatment with Vidaza. Todd is still making "bad" or ineffective blood cells, but the Vidaza targets them. So, we aren't sure what will happen once the Vidaza rounds of chemotherapy are completed. Some patients have been fortunate enough to go into a short-term remission, while others have experienced resumed progression. Vidaza is usually used in two main instances: first, for patients without a bone marrow match or who are too old or too unwell to undergo a transplant. For others, it is used pre-transplant to get patients into optimal health conditions, by reducing the blast counts, so they respond better to transplantation. 

So, will Todd still need a transplant? Most likely. I understand that there may be a chance he could go into a short or maybe even a long-term remission. However, chances are it will begin to progress again at some point. 

The advantages of putting off transplantation include a good quality of life if he is not too symptomatic. It also buys time for new cures to be researched and implemented. We were told from the start by several doctors that the research in this area is moving rapidly. Many hope for a safer alternative cure than bone marrow transplantation. 

The main disadvantages of putting off transplantation is the possibility that his MDS could progress quickly to Acute Myeloid Leukemia without any warning. This in itself holds many scary outcomes, including proliferation to other parts of the body. 

Another would be that there won't be a newer, safer cure by the time he needs it. Meanwhile, he is getting older and the MDS could progress making him symptomatic or if progression would go to AML, it would require additional chemotherapy to put it into remission before transplantation can be attempted. Even if his blast count went to say 15% which isn't technically AML yet, he would still have to lower his blast count to begin the transplant. 

So, for now we are cautiously optimistic that the multiple rounds of Vidaza will continue to affect his MDS positively.  Remission would be ideal! Todd is still young enough that we are wiling to wait for a newer, safer cure if we can. If it becomes absolutely necessary he will do the transplant, but as a last resort. 

This is all conditional upon the results of his most recent cytogenetic report which we should receive in about another week. 

We are taking things a day at a time trying not to get ahead of things. We are listening to his doctors and weighing their advice and treatments regimines. We are rejoicing and thanking God for this good news. 

Thanks again for your support!