Transfusions and CBCs in Dayton too slow; Todd becomes Neutropenic

When Todd went in for his third day of Chemo on Wednesday, January 14, 2015, they checked his blood counts again.  His hemoglobin dropped from 8.0 on Monday to 7.9 on Wednesday.  So, he needed a transfusion. 

But the nurses and staff can't seem to get the ball rolling.  First, they stalled collecting blood to have his type and screen done to order blood, because they say this can't be done at the Kettering location. So, he had to drive to Miami Valley South to have it drawn.  Apparently, only a nurse is allowed to draw blood from his Hickman Catheter Port.  The phlebotomists are not allowed to touch it.  They can only draw from his arm.  So, this means he has had to sit and wait for a nurse, when one is done with their own patient to come draw his blood.  This has taken anywhere from 30 minutes to over an hour.

After waiting, a phlebotomist came up and asked him if he just wanted stuck in the arm and he said yes.  He was tired of waiting.  So, they got the sample and told him it could take up to an hour to get the results.  He was tired and so he told them just to arrange to have the transfusion done the next day.  They made an appointment for him at the Main Campus of Miami Valley Hospital in Dayton for the next afternoon. 

He shows up there the next day and they can't get the results from the type and screen done at their South location (they have different computer systems).  So, he waits an hour for them to get the type and screen.  Then they have to order the blood.  It always takes about 1 1/2 hours per unit of blood and he always gets 2 units.  So, needless to say it was a long day. 

Today, Monday, January 20, 2015, he purposely goes to the Cancer Center location at Miami Valley South, as arranged at his last appointment with his local oncologist, so that he can get his blood drawn there on non-chemo days.  If he needs a transfusion, he can have it done there (supposedly).  When he gets there, there is NO standing order, or orders of any kind, for him to get his blood work done!  So, he has to wait til they call the doctor and get orders.  Then, there is no nurse available to take blood from his Hickman again, so he waits.  After getting frustrated, he allows them to stick him in his arm again, just to get the blood sample.  Then, they say it is going to take another hour to get the results and that is with it labeled "STAT."  Feeling pretty confident he doesn't need a transfusion, he leaves and tells them to call him with the results and if he needs to come back he will.

Hours later, they call.  Instead of giving him his CBC results, they just said he whites were low at .7 and that's all.  So, he calls back asking for the rest of the numbers; of course he can't get anyone to help him.  He has to leave a message for someone to call him back.

Late in the day, someone from CompuNet from Miami Valley South calls the house and says that they finally got a standing order for him to have blood work done there from here on out, but that he will have to fill out all the paperwork over again!  I don't know if he wants to go back there if it takes 1 hour STAT to get blood work results.  At the Kettering location it takes 10 minutes and at the Cleveland Clinic it takes about 15-20 minutes.  So, I ask her why can't they get someone to take it from his Hickman, and she informs me of the policy that only a nurse can do it.  She said, "He has good veins, they can just stick him."  And, trying to keep my cool, say, "No, not really, not when his platelets are low, he doesn't need to be stuck!  It could cause him to bleed and bruise!"  And she says, "Yes, I guess your right.  I hadn't thought of that!"  Ugh...

Between waiting on orders, waiting on nurses to draw blood, waiting on results, waiting to get a type and screen, and waiting to get the type and screen results and getting blood ordered, to actually getting the transfusion, Todd is just tired of waiting.  He doesn't have much energy or patience right now.  Who would? No patient should have to go through this much confusion and waiting!

It looks like I will be calling the local oncologist's office to let the doctor know that not much has been going according to his arrangements.  I think he needs to know that something is wrong with the process, which should obviously function more smoothly than it does.

 He finally got a call back from another nurse with the other results:  His Hemoglobin is a 9.3, well above an 8; no transfusion needed.  His Platelets have dropped to 67,000, but well above 10,000; no transfusion needed.  But, his other counts are problematic: his whites dropped to .7 or 700 and his ANCs to .3 which makes  him Neutropenic (anything below .5), which means new restrictions on diet, foods, environment, getting out, etc.  These very low numbers put him at HIGH RISK for contracting infections and little immunity to fight them.  Under other circumstances, they could give him infusions of Neupogen to help build up his white cells, but unfortunately, they cannot do this when there are cancer cells present, because it could cause the cancer cells to multiply too. 

It is normal for his white counts to drop after finishing a round of Vidaza, and they will usually begin to bounce back after a week or so.  That being said, its not good that they are this low.  We all are going to have to be careful in the meantime.

I'm glad he has an appointment back at the Cleveland Clinic with his BMT doctor on Wednesday, so we can ask if he needs to go back on his antibiotics.  We are not sure what this visit will entail except for the routine CBC and seeing the doctor.  I'm sure they will take blood for a chimerism study and we will discuss whether he will do another round of Vidaza before the stem cell transplant.  At some point, I'm sure his BMT doctor will schedule another bone marrow biopsy to check the progression or regression of the disease.  He needs his blasts cells to be as close to 0-1 as possible before beginning the stem cell transplant. 

I will post more after Wednesday.  Thanks again for caring enough to read this blog and to pray for Todd. 

Day 112: Local Oncologist; No transfusions needed

Tuesday, January 6, 2015 found us at the local cancer center in Dayton to have Todd's CBC drawn to see if he needed any transfusions and to connect back with his local oncologist. 

Praise God, no transfusions were needed. As a matter of fact, his counts were good!  His hemoglobin was stable at 8.9; platelets at 16,000, and his whites were high (for Todd) at 3.5 or 3,500!!! (Normal range on the low end is 3.8). His ANCs were normal at 2.6. The whites and the ANCs help Todd fight infection, which is so important right now with so many viruses and the flu going around. 

Todd complained to the doctor about his last CBC and the long wait (5 hours)i in getting an order and setting up his platelet transfusion, which had to be done the next day at 7 am. The doctor said that should have never happened and suggested that we go to the other location at the Cancer Center at Miami Valley South Hospital. That way he can have his blood drawn along with a type and screen and if needsa transfusion,it can be done right there at the hospirL. So, every Monday that he doesn't have chemotherapy, he will go to the Miami Valley South Hospital Cancer Center for blood work.  The chemotherapy though at least for next week will be done at the same location. 

The doctor asked what options for treatment his BMT doctor in Cleveland was considering. We talked about the possible use of Revlimid medication that is used successfully in 5q deletions alone. We talked about using an unrelated donor instead of his brother for the second transplant and/or donor lymphocyte infusion (DLI). He is always very respectful of Todd's BMT doctor,but still engaged us in discussion about it. 

Earlier in the morning, Todd got his last Chimerism results posted to his "My Chart". It showed that Todd's original cells in his peripheral blood was at 50% and the amount found in the T cells was 24%!  This is a huge reduction from the last results that had him at 60% and his brother's donated cells at 40%. I have requested that his BMT doctor in Cleveland call us to explain these results. We briefly discussed them at his appointment today and asked if this change could be attributed to the Vidaza working and if it could result in giving Todd the full donor cell chimerism he needed to bring his donor cells to 95-100% and Todd's 0-5%. His opinion was that Vidaza can only attack the immature cells once they are produced, but it cannot target the mother cells that keep producing the bad cells. Only new transplanted bone marrow could do this. But, he agreed that an additional DLI of his brother's stem cells could allow his brother's marrow to get the upper hand and it could help to produce some Graft versus Host Disease needed to wipe out the remaining original marrow. 

He didn't act surprised that Todd didn't develop any Graft versus Host Disease with using his brother's perfect matched bone marrow. That's why he raised the question of his BMT doctor using an unrelated donor next time. I told him I had asked her the same question: Was Tom's marrow too much of a perfect match, that Todd's body did not offer any resistance to it, especially with the immunosuppression therapy that was applied?  I gave him her explaination about having three marrows might not be the best choice right now.  We also explained that she is taking everything slow and carefully weighing each treatment decision according to Todd's changing condition week by week. 

We go back to see him in a month. Meanwhile, the second round of post-transplant Vidaza chemotherapy starts next Monday, January 12, 2015. 

I'll come back and edit this post or write an update once I get some clarification from his BMT doctor when she calls us back. 

One note: the oncologist today had my back and got onto Todd about doing any manual labor or activity. Even though he may have good days when he feels like doing chores around the house or yard, he still needs to be cautious. Any fall, bump, or injury could cause internal bleeding with such low platelet counts. 

We also discussed his frozen shoulder pain and told him he could take some Tylenol and/or the oxycodone (that doesn't work for Todd) but absolutely NO ibuprofen. He was also willing to send Todd to get physical therapy if it was no better. He didn't think or know of any relation with the flare up and low platelets. 

The year ends with Transfusions.

We had to get up at 5:00 this morning to be at the Cleveland Clinic by 9:15 am. As we got closer to Cleveland we see what looks like mountains in the distance. Of course there are no mountains...it's a huge cloud bank covering Cleveland. How typical!

We arrive and they quickly get to the blood work, including a new chimerism study and type and screen anticipating the need for transfusions. Todd was feeling pretty fatigued the past few days and we knew his hemoglobin was down last Friday. The results came in that he needed platelets. His was 9 and the threshold is 10. He also needed two units of blood since his hemoglobin was at 7.6. and the threshold is between 8 and 8.5. His white counts were up to almost normal at 3.47 or 3,470 which is likely the result of the Vidaza chemotherapy giving him a bounce. 

Todd teased that he knows how a vampire feels when he hasn't had any blood!

Our social worker stopped by to give Todd the standard 100 day post-transplant survey. She has been such a great help!  

Todd's regular BMT doctor was back from vacation and we had a good long visit. She took him off all of his maintenance medications except for one, his Acyclovir. This made Todd happy!   After discussing today's counts she talked a little bit more about where Todd is and a likely game plan for the next few steps. 

First, he will have his next round of chemotherapy in Dayton starting January 12, 2015. She said she only wanted to do 5 days of the chemo Vidaza instead of the standard 7-day treatment regimen he had over the summer, because his bone marrow is still very sensitive to any changes and they are exposing both his diseased marrow and his brothers donated healthy marrow to the toxicity of the chemo. While they hope to kill off his original diseased marrow they don't want to damage or lose any of his new marrow. 

She would actually like to do at least two more rounds (Jan and Feb)of Vidaza chemotherapy to get Todd back into remission enough to proceed with a second stem cell transplant. But this will have to be evaluated week by week and month by month. Many of these decisions will have to be made based on how his chimerism stays. If his brother's donated marrow can hang in there, they can proceed with additional rounds; but, if there would be a drastic change where his original marrow would increase to the point of wiping out his new marrow, then they would likely have to stop the Vidaza and start some type of stronger chemotherapy, like what he had to wipe out the marrow before his transplant. 

Right now, his chimerism consists of: His own original marrow 60% and his brother's donated marrow at 40%.  There is still a hope that the Vidaza can target the diseased original marrow, causing it to decrease, and allowing Tom's donated marrow to flourish.   She said the likelihood of Todd developing any Graft versus Host Disease at this point is minimal and not likely.  So, he won't be able to utilize the Graft versus Leukemia Effect to wipe out his old marrow, which is what has made the first transplant unsuccessful.  

We talked about the possibility of using a different donor this time instead of his brother Tom again.  I asked if there was a possibility that their HLA Match was "too good," not allowing any Graft versus Host, but she said it is complicated to bring in another bone marrow from a third person when he already has two different marrows.  She explained that Todd's marrow is not only sensitive because of all the chemotherapy and the transplant but because they are co-existing. To add a third person's marrow may create a range of other issues including exposures the new donor would bring in.  So, that option is not ideal right now.  

She is still waiting to see what would work best when harvesting Tom's peripheral blood stem cells.  There are two main options.  The first would be to give him Neupogen injections prior to harvesting, which would produce a larger number of cells, but they would be newer, immature cells that may not be as effective depending on the situation.  Or, the second, to harvest the stem cells without Neupogen, because then they would be able to obtain more mature cells.  Either way, it looks like we are at the mercy of Todd's brother Tom to donate blood stem cells.  This is much less invasive than donating bone marrow.  He would only need to do a pre-blood screening prior to donating and it only takes several hours to sit and filter his blood for the cells.  

As to whether the second stem cell transplant can be done outpatient or inpatient is yet to be determined.  Too many factors to consider now.  This is another decision that needs to be made closer to the transplant.  

As for going back to the Cleveland Clinic for treatment appointments and transfusions, we no longer need to do that.  Todd is going to start going to his local oncologist here in Dayton to have blood work drawn every Monday.  If he needs transfusions, it will be arranged here in Dayton at Miami Valley Hospital again.  So, this is good news for us.  We will only need to go back every few weeks to have blood work drawn for special studies and to meet with his doctor.  

So, the next appointment in Cleveland, will be on Wednesday, January 21, 2015.  Hopefully, he will have his next appointment here at the local oncologist on Monday, January 5, 2015. (It's been hard to get things scheduled with the holidays and reduced staff).  Then he will start his out-patient chemo here the following week, Monday, January 12.

I feel pretty good about this game plan.  I did ask about any clinical trials that he would be ideal for, instead of doing the second stem cell transplant, just to make sure we were looking at every option.  She said she could look at that route, or the option that Todd could just stay on the Vidaza month-to-month until he stopped responding to it.  Then, they would have to try another medication, like Revlimid, which has showed some success with patients who have just a 5q chromosomal abnormality, but this wouldn't be guaranteed to work, since Revlimid works better on patients who have only had this deletion in the past and not the complex multiple deletions Todd has had in the past.  She said we would lean towards these options if Todd was older and in poorer overall health, but, since he is young and in good health right now, she feels the more aggressive treatment of the second stem cell transplant is a better course of treatment for him.  Todd does face the risk of getting a bad case of Graft versus Host Disease, which she said he doesn't want, so it will take some serious finessing to get the chemotherapy and immunosuppressant use, both prior and post-stem cell transplant as fine tuned for him as possible. 

In addition, she reassured us that she alone would  not be making all the treatment decisions, but that she would be relying on her colleagues in their weekly meetings to give her their perspective and experiences in planning a course of action.  It is nice to see that she doesn't have a "God complex" and that she is humble enough to listen to the opinions of her colleagues.  

I still might look at other options or see what clinical trials are available on my own.  However, I can't help get past the stigma in my own mind that clinical trials are for lost causes.  

Looking back, I wish we had made the decision to have the transplant prior to him developing the complex chromosomal abnormalities.  This was a hard decision to make then without having the hindsight we have now.  His blast counts were staying under 10%, no where near the Acute Myeloid Leukemia level (20%) and he went from two years of having no abnormal cytogenetics to having multiple complex chromosomal abnormalities 3 months later.  I think the "wait-and-see approach" was alright for awhile, but once his numbers starting climbing, we shouldn't have risked the chance of him developing chromosomal abnormalities.  It was this development that convinced me to push him for the transplant, knowing that it can alter a patient's prognosis.  I personally believe that these abnormalities are complicating treatment now and have contributed to the unsuccessful bone marrow transplant.  But, this is just my "hunch" and I don't have empirical, definite evidence to prove that.

Looking back, however, while it might help or influence someone else's future treatment decision (that is the only reason I include my opinion here), doesn't help us at all.  We must look forward, remain positive, and trust God with the future.  I'm learning from the book that I am reading, that the only thing that separates a Christian from a non-Christian in situations like this, is in how we respond.  Christians have no extra protection from cancer from non-Christians.  If it is God's will to allow cancer, then he must have a purpose in the process and/or outcome.  Maintaining our joy and trust in his divine purpose through this crisis can bring us comfort and provide hope to others. 

In closing, I read something recently that said when a loved one has cancer and is going through treatment, it is important to view your current state of uncertainty as the new normal.  This is going to be my outlook in the new year. God Bless!

Day +100: Christmas Day!

Merry Christmas!  Today is Day +100 post bone marrow transplant. With a successful transplant, the critical period would be over, the disease would be gone, and Todd's counts would be up in the normal range or very close to it. We would only be doing routine follow-up appointments. But this isn't what happened...God has another plan in store for Todd. So, our journey doesn't end here. We will continue fighting MDS longer.  

We are thankful to be home with family. We had dinner with Todd's mom on Tiuesday, December 23. On Christmas Eve we went to have dinner and a gift exchange with my family. Today, we were woke up starting at 7:15 a.m. by our teenage daughters!  (Some things never change!). 

Tomorrow morning Todd will have his blood work drawn here in Dayton to make sure he doesn't need any transfusions. If he does, we will need to go to Miami Valley Hospital or another hospital for whatever transfusion he needs. If nothing is needed, we will return to the Cleveland Clinic on Wednesday, December 31, 2014 for treatment and an appointment with his regular BMT doctor. 

May God Bless you!  We hope you had a Merry Christmas!  

Days +90: Chemo going well

The first day, December 15, 2013,of chemotherapy (Vidaza) went off uneventful. Todd received treatment at our local cancer center in The Dayton area. Todd was even assigned his former nurse Dinah to resume his treatments. To show you how Todd has retained his sense of humor, he couldn't wait to tell Dinah that he has a Hickman catheter, because she often struggled to get the needle through his "thick skin."  

They ran a CBC before starting treatment and the results were encouraging. The showed a good bounce from the transfusion he received last Friday. We were glad to see he was able to hold the good stuff from the transfusion. His whites went from 1.28 to 2.0; hemoglobin from 8.1 to 10.5; and platelets from 22,000 to 27,000.  Sometimes patients receive transfusion, but have a hard time keeping the cells from them for various reasons. Todd had this problem in the hospital with his platelets. So, this is good news. 

 

I think the local oncologist draws a CBC every 3 or 5 days. It is common for counts to drop the first few days of chemo, but as the treatment begins to work, suppressing the growth of blast cells, counts go up. 

Day + 27: Frozen Shoulder side effect

Today Todd saw the bone marrow transplant doctor. Everything has been going well, except for Todd's shoulder pain. Todd has been experiencing terrible shoulder pain since about 4 days before he was discharged from the hospital. At the time, they said he could have been caused by the Neupogen infusions they were giving him, but we kept thinking it was from laying in the bed or sleeping on it wrong.  He even considered deterioration from playing sports.  They treated the pain with oxycodone since he is not allowed to take any anti-inflammatory medication like Ipuphron. We thought it would go away...

But it hasn't. Instead, it has only gotten worse in the last few days. He has very limited mobility of his left arm. He can't raise it up at all and when he tries he is in excruciating pain. So, we brought it up to the doctor again today, and she said it is likely "Frozen Shoulder" and that it was likely caused from the Neupogen. I had never heard of it before so I looked it up online. 

http://www.mayoclinic.org/diseases-conditions/frozen-shoulder/multimedia/frozen-shoulder/img-20007530

It can occur after a serious medical condition. I also looked at the side effects of Neupogen and it said that muscular problems have occurred about 22% of the time in studies and it occurs in the left shoulder (exactly the shoulder and arm that hurts Todd). Todd thought it was his rotator cuff, but we ruled that out too because it was his left arm, not his dominant pitching/throwing 

right arm. 

So, what happens now?  They are setting up appointments for an X-ray, Orthopedist, and physical therapy to confirm the diagnosis and to receive treatment to loosen up the joint and thereby relieve his pain. However, I'm afraid this is going to take weeks or months or possibly longer to resolve. 

We will keep everyone posted. Please pray that he can see a specialist soon and for pain relief. 

More information http://www.drugs.com/sfx/neupogen-side-effects.html

Day +22 Discharge Day: Outta of here!

Todd with one of his nurse's Marissa. She was his nurse during the transplant day. 

Todd with PCNA Shawn. 

We were so excited to learn that Todd's platelets not only held above 13,000 but went up to 14,000!  His white count jumped from 1,070 to 7,410 with the help of the Nepegen they gave him the day before. His Hemogloblin was at 8.9. So no transfusions were needed!!! 

It took some time to get everything signed. So we said goodbye to the PCNAs and the nurses that we could say goodbye to that day and took a walk down the halls. We left about 3:00 pm. 

On the drive to the hotel I was so excited for him to see the beautiful fall colors but when I tried to point them out he was dozing off!  (Poor guy!). We arrived at the hotel about 4:00 pm. He promptly fell into bed for a nap while I unpacked, organized his medications, and put his hospital visits into our calendars. 

I made a simple dinner at the hotel of turkey burgers, cut up potatoes baked until crisp in the oven, and mixed vegetables. He ate very well!  He took his medication and we watched TV and lounged around. It was a relaxing evening. 

Moving, Exericse and Walking are essential in Healing process

Todd stands outside his hospital room ready to go on a walk for the first time without his IV pole! If you walk the "L" shaped hallway of the11th floor round trip, the distance equals 1/6 of a mile.  Todd usually likes to walk all six laps at once, but sometimes he will just walk three laps in the morning/afternoon and three laps in the evening so he can get at least a mile of walking in.  Sometimes he will also go to the exercise room afterwards to use the sit-down elliptical machine or treadmill.

If there is one thing I have learned from the bone marrow transplant process (from observation and from talking with other families here) it is this:  the patients who get up out of bed and walk and/or exercise are the most successful in getting out of here and sooner!

For those who lay in the bed because they are having difficulties or who just don't have someone close to them to gently give them a prod and a push to get moving, their progress and length of stay is much longer and harder.  There comes a time when the family and/or caregiver have to exercise some "tough love" and insist on getting the patient moving.  Enabling and pitying them does them NO favors.

While I understand that every person's situation is different: the type of cancer they have, their age, their health prior to admission, the type of chemotherapy, the type of transplant, and how their body heals and recovers, I still feel that getting up and getting moving is essential for recovery. 

The bone marrow transplant binder that is given to patients prior to transplant recommends that the patient "Walk in the hallways 4-6 times a day" in addition to sitting in a chair for all meals, walking to the bathroom, using the exercise room on a regular basis, and to going to the family lounge to visit, use the computer, etc.  (Cleveland Clinic, 2011).  While every patient can have a bad or "off" day from time to time and just cannot get out of bed, these shouldn't be everyday.  Exercise keeps the patient from developing hindrances like pneumonia while promoting muscle and bone strength, stress relief, and better balance.  Personally, I think it can help work up an appetite and provide a change of scenery from the same four walls!  It is a great way to meet others who are going through the same process and compare recovery strategies.

Difference in Transplants regarding length of Hospitalization time:

Autologous bone marrow transplants use their own stem blood cells harvested prior to chemotherapy  to be transplanted or infused on Day 0/Transplant Day.  There is no risk of Graft versus Host Disease since they receive their own cells, so these patients are not required to stay hospitalized as long, nor are they required to stay near the hospital for the 100 days after transplant.  From my observation of the patients on the floor with us, those with Acute Lymphoblastic Leukemia (ALL) or Non Hodgkin Lymphoma often have this type of transplant.  These patients have their Hickman Central Venous Catheter removed before discharge from the hospital. 

Allogeneic bone marrow transplant, like what Todd had, is when the bone marrow is from another  donor who is either related or unrelated, a partial match (where 4 key HLA matches are found) or a full match (all 8).  Todd's brother happen to be a full 8 point full match.   According to the National Marrow Donor Program:

Each brother and sister has a 25%, or 1 in 4, chance of matching you, if you have the same mother and father. It is highly unlikely that other family members will match you. Under very rare circumstances, family members other than siblings may be tested...About 70%, or 7 out of 10, patients who need a transplant do not have a suitable donor in their family.  (National Marrow Donor Program.  1996-2014.)

We feel so blessed that out of two brothers, only 1 out 2, was a match for Todd.  It is believed that full matches have less chance of developing Graft versus Host disease or other complications.  We have met about four other families who were only able to find a partial match; most where children or siblings.  We meet two other patients besides Todd who received a full match donation.  One patient received his bone marrow donation from someone in Germany.  In his case, the bone marrow was collected from the donor in Germany and then was frozen and flown to the Cleveland Clinic.  In Germany, it is MANDATORY that ALL German Citizens become donors!  The majority of the patients we have met on the floor have had Acute Myloid Leukemia (AML) or Chronic Leukemia.  Because of the risk of Graft versus Host Disease, these patients have to remain within an hour drive of the Cleveland Clinic for about 100 days and take immunosuppressant drugs to prevent GvH.  These patients have to keep their Hickman Central Venous Catheter in place through the 100 days in case treatment or re-admission is needed.

Some other setbacks that can happen include: fever, infections, infection in the Hickman Catheter (Central Venous Line), nausea, severe diarrhea including C-dif, vomiting, severe headaches, mucositis and esophagitis (which can be so severe that morphine or another pain medication must be administered). These complications or the age of the patient can also make exercise difficult. They are often identified with a sign outside their door as a "fall" risk because they are at risk of falling down. This is obviously a major hindrance to walking.  One of the elderly patients in the leukemia side of the floor had such a hard time walking that she pushed a walker while her son held her up from behind.  I think they too realized the importance of walking and moving, no matter what it took.

Todd has been so fortunate not to have any serious side effects or setbacks.  Yes, there have been several days that he didn't get out of bed at all.  Yes, there were days he needed to be prodded to get out of bed by me or his doctor or nurses, but in pushing himself on most days, he has recovered so well that he is almost ready to be discharged!  Will I still have to push him to walk?  YES!  Everyday! It is still important that once he is discharged to continue to get his exercise.  Then we can walk at the mall, grocery store, in a museum (during non-busy times), a park, or neighborhood.

As I have gotten older, I have learned how important staying active is to having good health.  This experience has reinforced to me that we need to make exercise part of our everyday routine, for the rest of our lives.   

References:

Cleveland Clinic Foundation. 2011. Staying Active During Your Hospital Stay. Index #14676.

National Marrow Donor Program.  1996-2014. Web. http://bethematch.org/For-Patients-and-Families/Finding-a-donor/HLA-matching/

Day + 7: Blood counts hitting their low

Todd has been doing as expected with no major complications. His symptoms of nausea, diarrhea, and fatigue are expected during this time period. He has avoided the dreaded mouth sores from the chemotherapy until today. He has to perform a strict mouth care regime four times a day. 

His CBC blood counts have been slowly declining. Today, his platelets were too low and he had to receive a transfusion of platelets. This too is normal in this situation. It will not be the last transfusion he receives. Instead, he will be getting transfusions for the weeks and months to come. 

It is hard to read, but today his Hemoglobin was at 10.6. Normal for men is 14-18 gm/100. His white count is at 80 instead of a normal of 4,000-11,000 lcm. His ANCs were 0!  The normal is between 40-60. And his platelets were 8,000 instead of 150,000-400,000 per cm mm. 

Transfusions are given if: 

Platelets<10,000

Hemoglobin 8.0 or below 

Today and yesterday he spent most of his time in bed. The doctors really push exercise though, even when the patients don't feel like it. Two days ago he walked on the treadmill and exercised on the sitting eliptical machine. He also has some stretchy tension bands to work his arms and upper body with. The doctor doesn't expect a regular "workout" but they do want them to walk up and down the halls at minimum when at all possible. This helps to keep them strong and in his words move the healing process along.

I've learned from Todd that if I walk with him, to always push his IV pole for him. This way he has more freedom and it gives him the illusion that he is not attached to it. So, if you are with someone with an IV pole, offer to push it for them, unless they need it to steady themselves. 

Thanks for all the texts, cards, and phone calls. If I had to ask for anything right now it would be to please be good and kind to my family at home, especially my girls. It shocks and angers me to hear that people are not being understanding and kind to them. Even though I've tried to communicate with Administrators, coaches, teachers, and those close to them, it still doesn't sink in!  I understand that it is hard to fully comprehend how we are feeling without walking in our shoes or being in the tramatic place we all are in, but it bothers me that people can't put their own selfish and power-hungry comments and attitude aside. 

So if you want to do anything for us right now, please, please be extra kind to my girls!  They are having a difficult time with this process too. Their dad is sick in hospital, hours away, and they can't see him often. (They haven't been able to visit him yet). Their mom is also far away and can't be there for them like normal. Their grandmother Donna mom has been a tremendous help and she is doing the best she can. She could use some encouragement instead of hassles. 

I am grateful for this support!  

Day 0: Bone marrow transplant

Todd's brother and bone marrow donor, Tom checked into surgery around 6:30 this morning, September 16, 2014. He went into surgery around 7:50am under general anesthesia where they harvested his bone marrow. The harvesting went perfect, even though they had to increase Tom's intravenous fluids due to 2 drops in his blood pressure from the anesthesia.

They began Todd's pre-meds about 12:00. They gave him Benadryl (to prevent any reactions), Tylenol, and Solu-Cortef (a steroid).   

Tom came up to Todd's room after being in recovery at about 12:50 pm right before the marrow came up. We snapped a photo of then together with the bag if marrow. The transplant itself was started at 1:10 pm.

They collected 405 ml of bone marrow. A normal-sized collection. 

We are so blessed to have Tom to donate for Todd. We can't thank him and our Heavenly Father enough 

Tom was tired still from the anesthesia, but he was able to go home with his wife right after their visit. 

The infusion of the bone marrow will take about an hour and a half. Todd is sleeping now about an hour into the transplant. 

Check out these videos

PS. Todd's transplant infusion finished at 2:39. pm. 

Day -1 before Bone Marrow Transplant

Todd did not have a good night. He had difficulty sleeping and began to feel chilled. He began to run a low grade fever, which prompted some diagnostic tests to check for infection: blood cultures, chest X-ray, urine samples. 

It will take up to 48 hours to hear anything back on the cultures. His counts overall were still good, with mostly his ANCs dropping a bit. 

He is nauseated and doesn't feel good. He will likely spend most of the day I. The bed. The staff here is very good at addressing pain and nausea right away and giving him medicine to help with those symptoms. We hope to see some improvement so he can eat something, but the next few days are going to be challenging. 

Todd finishes all his chemotherapy. Day-2

Todd received his last two doses of Cytoxin on Satrurdat and Sunday, September 13 and 14, 2014. He suffered from some nausea and headaches but overall did felt fairly well. 

Here he is showing off the multiple bags of IVs: The Cytoxin, Mesna (a protective drug), and some sodium water, and sugar water that is used with the Mesna. 

They gave him plenty of IV fluids to flush out the chemo and protect some of his organs. He ended up with so many fluids that he was retaining water, which in turn caused him to gain 6 lbs in one day. So, to get this water out, they gave him Lasix, which made him have to urinate frequently. 

We were discussing the thought that this will hopefully be the last chemotherapy he will ever have!  

Cancer Etiquette: How to talk to people with Cancer.

I just read an insightful article written by Rosanne Kalick, titled, "Cancer Etiquette: A Survivor's Perspective on Effective Communication" which was in the Caregiver's Guide for Bone Marrow/Stem Cell Transplant produced by the National Bone Marrow Transplant Link (2007). This article is a just a taste of her book, similarly titled, Cancer Etiquette: What to Say, What to Do When Someone you Know or Love Has Cancer.  (Available at Amazon: http://www.amazon.com/Cancer-Etiquette-What-When-Someone/dp/0874604508/ref=sr_1_1?s=books&ie=UTF8&qid=1409238495&sr=1-1&keywords=cancer+etiquette). 

There was so much great information in the article (link attached).  I learned some things that I will take to Cleveland with me and try to apply when I talk to Todd or ask him questions.  For example, instead of asking how he is, ask, "How are you today?"  (p. 16).  Another admonition: "don't tell the patient how great he looks" but instead say "You are looking stronger today."  She gives advice about statements that dismiss concerns, like "you're not going to die" and identifies sensitive topics to avoid discussing like: hair loss, personal issues (sexual side effects), and/or your own strong religious views unless these were topics you were able to discuss openly before the cancer diagnosis. (p.16-17).

The best advice she says she can give: "When in doubt about what to say, don't say it." The most important words to say instead are: "I love you."  (p.17).

In offering help, Kalick says to be specific about what help you can offer.  Instead of saying things like, "Let me know if I can help" or "If you need me, I'm here" say (for example), "I'm available on Monday evenings to run errands" or "Can I bring a meal on Friday?" (p. 17).

Kalick gives some advice about visiting I found useful. She says that your presence, touch, or hug is often more important that words or there may be times when "silence may be best the connector." (p. 17).

She wraps up the article by giving suggestions or guidelines for gifts.  Transplant patients are much different from other patients in regards to what they can eat, touch, or have in their room.  Magazine subscriptions, CDs or books that are "short and light," emails, video messages, photos, or jokes are good suggestions. (p.18). I have also read that soft blankets or hats/beanies are nice for any cancer patient.  She says to "plan for the long haul" and "work in community" when giving support to a family dealing with cancer. 

I have a general mailing address for Todd, but we won't know his room number until he is admitted.  I will post this information all at once when I get it on September 7, 2014 if anyone wishes to send a note of encouragement.  In the meantime, I am putting together a photo album to take with us.  If you would like to send me a funny or cheerful photo via email or snail mail, I would love to include it.

I wish I had read this article sooner.  It has helped me to re-evaluate my words and my actions when addressing cancer patients.  Hope you find a moment to read it!

Please follow this link to read the short three-page article: http://www.nbmtlink.org/resources_support/cg/cg_dontknow.htm 

Treatment halted due to Insurance Cancellation!

Todd went in for his day 6 of Vidaza out-patient chemo today, August 18, 2014 but didn't get past the check-in counter. He has to present his insurance card everyday before treatment. Today he presented his card, but was told his insurance was inactive.  He called Anthem Blue Cross and Blue Shield while the receptionist was checking and they said his policy had been CANCELED, unknown to us, as of July 31, 2014!

Traumatically, Todd heard the worst news when he called his employer to find out his employer had allowed his insurance to be cancelled. Todd had been paying his insurance premiums out of his private short-term disability income since he left work to be placed on disability. We thought everything was fine and had just praised his employer for such great insurance coverage to our friends and Todd's co-worker during a lunch date. Apparently, after twelve weeks of not actively working, he needed to be placed on COBRA insurance.  We later learned that there had been a meeting between the insurance company and Todd's boss where this change was discussed, but NO ONE NOTIFIED US! I believe the law or rule states that we are supposed to receive a 2 week notice to sign-up for COBRA so we can pay the insurance premiums at the COBRA rate.  The local insurance agent told us that Todd's employer handles this human resource responsibility, but for some unknown reason they didn't do it.  We received no notice, no phone call, no letter, nothing!  No one can tell us why were weren't notified in advance so that we could make the payments and fill out the paperwork to continue our coverage seamlessly. 

Todd called his employer and tried to get this straightened out.  We were distraught.  How could they do something like this to an employee of over 20 years?  How could they do it knowing Todd is facing a major life and death medical procedure in less than three weeks that is likely to cost hundreds of thousands of dollars?  Our family is already under tremendous stress, without learning we lost our health insurance at the most crucial time in our life! 

Not only did Todd NOT receive his last two days of Vidaza treatment, but our oldest daughter had two doctors appointments scheduled these same days before she left for college on Wednesday, August 20.  Todd's brother was scheduled to go up to Cleveland to have all of his pre-transplant donor health tests done on Thursday, August 21, this same week.  Our daughter couldn't get any of her prescriptions before she left (and still hasn't got them) for college.  Nothing could be approved.

We had to scramble on Monday to write a letter, fill out a new application for COBRA insurance and mail checks for July and September insurance premiums to Colorado by priority mail so we could get it re-instated.  They wouldn't reinstate it until they received the checks!  I have to thank the insurance agent for working so hard to get us reinstated as quickly as possible. She really cared and tried hard to fix the situation.  On Wednesday, while driving to move-in our daughter into our dorm, the agent emailed us a new Anthem application that had to be completed and re-sent the same day, so they could temporarily approve Todd's brother's appointment at The Cleveland Clinic for Thursday.  So, half way through my daughter's move-in, we  had to stop, go to the University library where we could open my email,  download and print the application, fill it out, and then find someone to help us scan the signed application and email it back to the agent so she could forward it to Anthem.  This was extremely stressful. 

We got the temporary approval to get Todd's brother's appointments handled by the time they got to Cleveland on Thursday afternoon.  We are still having to deal with re-submitting any claims that were originally turned down between August 1 and August 18.  At least they are able to back-date the policy to cover us beginning August 1. 

All I could think about all week, was that we would have to reschedule the transplant.  Not only because of the lack of coverage, but because all the pre-transplant appointments wouldn't be done in time or within the allotted time leading up to the transplant.  The transplant is a process that takes multiple steps and perfect timing to achieve.  It is like a domino trick:  all the dominoes have to be lined up just right for everything to fall correctly.  For example, Todd has two more appointments before his admission date on September 7, 2014 to prepare for the transplant.  These appointments have to be done in a timely manner, just like all of the staging tests had to be done within a 30 day window of the transplant. 

This is obviously something that no one at his place of employment understood or cared about.  His boss called to try to apologize or offer money saying someone dropped the ball. While I tried to respond graciously, I wondered if he understood the emotional pain this caused.   Could anything he had to say relieve the tremendous amount of stress, anger, and anxiety that this "lapse" created for us?   A postponed transplant date would have so many adverse consequences: Todd would have to repeat all his testing, maybe get another round of out-patient chemo, his brother would have to postpone testing, and more importantly loss of time with our kids.  We knew it was already going to be a stretch to get home to be with our family before Christmas after the transplant (100 days), but when I thought we would have to postpone the transplant date, which would mean no Christmas as home, I was ready to cry.

I'm very thankful that we could get the insurance reinstated within the 30-day grace period, but I can't help wonder what would have happened if we didn't find out until after that time. It will take another week and some more phone calls, but hopefully we can get all the claims processed. I pray that we can get past our anger and give it over to God. I pray we can overcome evil with good.

“Vengeance is mine, I will repay, says the Lord.” ²⁰ To the contrary, “if your enemy is hungry, feed him; if he is thirsty, give him something to drink; for by so doing you will heap burning coals on his head.” ²¹ Do not be overcome by evil, but overcome evil with good.
-Romans 12:19-21

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.

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!

Todd celebrates his 45th bithday on his 5th day of Vidaza

Good News:  Today we celebrated Todd's 45th Birthday!
Bad News:  He had to get his 5th treatment of Vidaza.

No one wants to spend their birthday getting chemotherapy or being weak, nauseated, and sick.  However, we are praying that this treatment and the treatments to come will give us another 40 or more years of birthdays for Todd!
                                                                                                                            

Todd with daughters Abby, Ellie, & Hannah

Day 4 was not as good as day 3.  He wasn't allowed to have the Aloxi that day, but they wrote him a prescription for a different anti-nausea medication called Ondansetron HCL that he takes orally every six to eight hours as needed.  While it helped, he didn't feel as well as Day 3.

Day 5: He received the Aloxi, but I think depression accompanied the fatigue and sickness today.  He has things he wants to do and it is depressing to spend your birthday being sick.

Todd with wife Kimberley and daughter Abby.

We took him out for lunch at Panera Bread and he ate some soup, bread, and half of a sandwich.  Then he came home and took a long nap.  He got back up this evening as our family went over to his mother's house for dinner, cake, and ice cream.  He ate moderately and enjoyed the taste of the cake, but felt sick after he ate it.

Although he has lost some weight, he still looks great!  Hopefully, he can rest up and bounce back a bit with a respite from the treatment on Saturday and Sunday.  He will begin treatment again on Monday and finish with his 7th treatment on Tuesday.  They will do some blood work to check to blood counts, which have a tendency to decrease with the seven-day treatment of Vidaza.  Round one will be done.

At some point, they will also follow-up with a bone marrow biopsy.  The waiting period for re-treatment is 28 days, but we are not sure he will receive another round or if the bone marrow transplant will be scheduled by then.  It depends on his blood counts, bone marrow results, whether staging for the transplant has been completed, and his bone marrow doctor's re-assessment.

Todd's mother, Anna, after the birthday dinner. 

If your dad were here Todd, he would say, "KLU, Keep Looking Up!"  The rest of us who are here say, "We love you!  Keep the faith! and Hang in there!"  We are happy to celebrate your life today.  Just think it has been two and half years since your diagnosis and we are still fighting!  I know that God will use this to his glory!  He's got so much more in store for you!