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 +91: Update from the Doctor.

Todd sent a message to his doctor about his appointment for next week and asked what about the plan after She is going to be out on vacation next week, so his appointment is with another transplant doctor on staff at the Cleveland Clinic. She wants him to come in for treatment and to see this doctor even though she won't be there.

She wants to run tests to see if he needs any transfusions, check his chimerism again, and check for any Graft versus Host Disease or Leukemia Effect. So this tells me that there may still be hope that Todd can see a reverse in his chimerism and/or that he can still develop some Graft versus Host to help battle his original bone marrow. 

She also needs these test results to help her determine the next step in treatment. She is still leaning towards doing a second bone marrow transplant using Todd's brother"s stem cells or just his T- cells. 

Overall, Todd has been feeling pretty well. He has been tired, resuming naps and has suffering some nausea even with the Aloxi they gave him the first day before chemo. He remains in good spirits despite the relapse, additional treatments, and our dwindling finances. We continue to trust God to supply all of our needs and he has been blessing us through friends and family and other charitable programs.  

We recently received an anonymous Christmas card with a $100 gas card and a $100 Meijer gift card from a good friend which will go towards groceries. My parents came over and made us dinner. They have been offering to help us in any way possible on a daily basis. Todd's mom also had our family over for dinner too!  Todd's brother and his wife sent us restaurant gift cards which makes it nice to go out to eat! We were also treated to lunch and good company by long-time friends who were happy to pay for lunch, recalling the time we had treated them to dinner after he had just lost his job!  We had forgotten all about it!

The Cleveland Clinic has been good to us  helping with COBRA premiums and providing us with a resourceful social worker. We learned that we are eligible for parking assistance with outpatient care. We are expecting assistance from the Leukemia & Lymphoma Society with medication co-pay reimbursements. Our social worker has also suggested a few other programs we may be eligible for since Todd is disabled. 

Please continue to pray for us. First that Todd will be healed. Pray for the doctors as they make critical decisions in how to continue treating Todd. Please pray that I can eventually go back to work or find a job when Todd's condition has stabilized.  We are trying to sell what we can and cutting monthly expenses where possible. I'm also trying to decide whether to continue graduate school, which would help me get a better paying job, but at a great cost. I only qualify for an unsubsidized loan at this point. I only have five classes left, with one being a practicum. 

We are taking life one day at a time. It's really hard to plan much further than a week in advance. But God is with us and we are still positive expecting the best!  

Day +49: Doctor stops Cellcept immunosuppressant

Todd got a call the next day after his appointment, Tuesday, November4,2014, from his bone marrow transplant doctor with the results from his chimerism study. The cells from Todd's own bone marrow is at 28% which is down from the 58% result from October 8, 2014 but still not to the 0-4% they need to be. 

So, to help the new bone marrow from Todd's brother to engraft better, the doctor instructed Todd to stop his immunosuppressant Cellcept that day.  She hopes this will help by allowing a little  Graft versus leukemia effect to happen. Unless Todd's old marrow dies out there will be a risk of relapse in Todd's MDS. 

That same day I received a phone call from another BMT patient we got to know while Todd was in the hospital. She had a related-perfect-match donor 

I'm transplant a few days after Todd's.  She too received a call from the doctor (we use the same one) to discontinue her Cellcept too. Her original bone marrow cells were at 30% which isn't too different from Todd's. 

Although the doctor is pleased with both recoveries, she is concerned about that percentage being a bit higher than she would like to see. Both Todd and this other patient/friend were part of the clinical trial where they received the reduced amount/experimental regime of pre-transplant chemotherapy. This is a little concerning. We hope that the trial regimen was strong enough to kill off the patients own bone marrow to allow full engraftment of the donor's marrow. 

At this point, there is no reason for alarm. We still have to be on the lookout for any signs of severe Graft versus Host disease and hope that the Graft versus Leukemia Effect will take care of wiping out Todd's original bone marrow which still has MDS. 

I'm sure the chimerism test will be repeated in a few weeks 

Day +48: Numbers Increase and Medication decreases

At today's doctor's appointment, Monday, November 3, 2014, Todd's doctor did not have his latest chimerism study results back yet.  It could be as late as Friday before they come back.  So, we won't know the results until next's week's Monday appointment.

The good news is, that even though these results aren't back, his doctor is ready to remove one of his immunosuppressant drugs named Mycophenolate Mofetil (Cellcept) from his medication regime beginning this Friday.  Under normal conditions, this medication is stopped between days +50 and +60.  So, this Friday, will be Day +52.  The removal of this medication will allow for more engraftment of the new bone marrow, but it can also allow Graft versus Host (GvH) Disease to surface.  A little of GvH is good because it allows for the Graft versus Cancer/Leukemia Effect to take out any remaining original bone marrow.  However, a lot of GvH can be dangerous and/or problematic bringing about a host of secondary problems which I have discussed earlier.

We feel good that the results of the chimerism study will show higher percentages of Todd's newly donated and engrafted bone marrow from his brother, because his CBC blood counts continue to increase at a steady pace as shown in his last three results:
                              Hemoglobin       White        ANC        Platelets
October 27                 10.9                3,110        2,190        50,000
October 31                 11.3                3,840        2,740        57,000
November 3               11.6                4,610         u/k           58,000

His potassium and magnesium results have also been high enough not to need infusions.  As a matter of fact, he is allowed to cut back to only 4 slow-release magnesium tablets per day instead of 6.

While any symptoms of GvH would take a week or more to show up, his doctor thinks he may be ready to go home for a weekend visit very soon.  I'm ready!

I'm getting so tired of hotel living.  The noises, thin walls, weird smells coming from neighboring rooms, and the train that decides to blow its whistle when it comes through about 2 am!  Not to mention that I am terribly missing my family and my dog Charlie!  I miss my bed, my pillow, my kitchen with an oven that works properly, and all my kitchen tools that make cooking so much easier!  My poor mom is ready for some relief too!  (God, please  help her to hang in there!).

We praise God for Todd's good health.  We ask that you remember us in your prayers.  This week specifically: That Todd's body will respond positively to the withdrawal of the medication.  That God will give us all patience and forbearance to endure our living situations a few more weeks.  That God will give us direction in our finances, job opportunities, and affordable health care in the months to come.  Thanks.

Chimerism study: first set of results

At today's treatment appointment, all of his blood counts levels and magnesium and potassium levels were good enough that no transfusions or infusions were needed. His counts continue to climb which is a good sign that Todd's new bone marrow from his brother (the donor) is engrafting and producing healthy cells. 

Two issues at the doctor's appointment were discussed today. First, Todd's blood work from a chimerism study and the rash on Todd's face. 

First, the chimerism study. It is a study of the DNA and HLA typed blood cells in Todd that determines how many cells are present from his own bone marrow versus his newly donated bone marrow. These results "lag behind" according to the doctor, so they may not be reflective of the present (they may be older than what is currently happening). This initial report showed that 49% of the cells were from Todd's original bone marrow. (This makes his chimerism mixed.) That means that 51% of his cells are from his newly donated bone marrow from the transplant. The doctor is thinking about repeating this test on Friday to check for more current results. We would all hope to see Todd's cell numbers from his old bone marrow to greatly decrease and the new cells from his newly donated bone marrow would greatly increase. The best result would be that there would be little to none left of Todd's old bone marrow cells. 

What is the implication of these results?  The chemotherapy that Todd underwent prior to transplant was to kill his own bone marrow since it was not producing healthy cells. There is a possibility that a relapse of Todd's MDS could occur if left unmonitored. The goal of the transplantation process is that the donor's bone marrow will engraft and take over healthy blood cell production. A mixed chimerism of both cells could prevent this from happening. This is where the Graft versus Cancer/Leukemia/tumor (GvL) effect comes in. 

This is why monitoring is so important post-transplant. The doctor can manipulate the GvL by altering the amount and type of medications Todd is on now. The doctor is talking about removing Cellcept from Todd's cocktail of medications. The Cellcept is a type of immunosuppressant that keeps the body from developing Graft versus Host disease. The idea here: to allow a little Graft versus Host in the form of Graft versus Cancer/leukemia effect to kill out Todd's old bone marrow to allow more engrafting of his new donated marrow. 

I will post updates on this issue as it develops. 

Second issue: 

The rash that started on Todd's face and neck has spread a bit to his chest and abdomen. It has not changed in intensity at all, so the doctor is still just keeping an eye on it. He will continue to use hydrocortisone on it for now. 

Post Script:  Date of Chimerism study: Day of release from hospital:  October 8, 2014.

More information on chimerism studies:

http://omicsonline.org/2155-9864/2155-9864-S1-006.php?aid=4311

http://www.gene-quantification.de/qpcr2009/Ganderton-qPCR-2009.pdf

Day +33. One third way through recovery

Last Wednesday's  and Friday's appointments were uneventful which equals great news!  No fluids or transfusions were needed. We were in and out in less than 2 hours.

Blood counts on Friday, October 17, 2014:  Hemoglobin 10.3, white 2,900, ANCs 2,150 and Platelets at 28,000. He still has a way to go until all of these numbers make it into the normal range. Right now, only his ANCs are officially in the normal range; all others still considered low. 

Update on Todd's frozen shoulder:  It has improved with hot showers, messaging, and the heating pad. His range of motion has increased but it is not back to 100%. He has a MRI scheduled on Tuesday, October 21, 2014. 

He developed a light rash on his face and neck on Tuesday, which is a sign of Graft versus Host disease. The nurse coordinator is not concerned about it at all. We were told to treat it with hydrocortisone cream for now and to be sure that Todd wears sunscreen everyday. Sun exposure can bring out GvH of the skin even on cloudy days. So we have added sunscreen to the morning regimen. 

We had visitors from home this weekend.  This was such an encouragement and blessing. Jeff, the associate Pastor of our Church, Hillside Chapel, treated us to lunch on Friday afternoon. It was so nice to talk about everyday things and to have prayer with him. 

Then, our three daughters came up for the weekend. We went to Little Italy for dinner and dessert on Friday night. 

On Saturday, we slept in and I made pancakes and bacon for breakfast. Then we went to the Cleveland Art Museum for the afternoon. It was amazing. We have all been to great museums like the Louvre in Paris and The British Museum in London; We didn't get to see everything, so we definitely would love to go back. We finished the day with dinner at the Cheesecake Factory and the girls had Menchies frozen yogurt for dessert. 

On Sunday, we enjoyed pan chocolat and then drove down to Bay Village to get a look at Lake Erie. After that, we did some eating, walking, and shopping at the Beachwood Mall. It was a great weekend. Being around our daughters was so much fun!

Todd has a treatment and a doctor's appointment tomorrow morning and afternoon. 

Discharge Date Set as Platelets go to 13,000: October 8, 2014

Before leaving the hospital last night to go spend the night at the hotel, I put my hand on Todd and said a prayer that his platelets would come up today.

"I do set my bow in the cloud, and it shall be for a token of a covenant between me and the earth." Genesis 9:13

Day +21, October 7, 2014  Total Days in the hospital: 30

I gave praise when he texted me this morning saying: 13,000!  What an answer to prayer!  His other counts were steady even though his white count had dropped slightly to 1,070 from 1,810.   No transfusions were needed at all today!

Last night he did have a couple bouts of loose stools and he took 2 Imodium tablets to help.  This caused a bit of concern today when the doctors came by during their rounds.  While Todd has not had a fever, they are still cautious about any type of infection or Graft versus Host of the intestines.  They don't want to discharge a patient with an infection, only to have to bring them right back in for re-admission. So, today they were just going to keep an eye on it. They decided that he would get an IV bag of Neupogen, a medication which helps stimulate the bone marrow to increase the production of neutrophils (what I refer to as ANCs)  in white blood cells. 

The discharge papers were prepared and Todd's bone marrow transplant nurse coordinator stopped by to discuss the discharge process tomorrow.  So far, Todd has not had any diarrhea or loose stools today.  He walked a mile in the halls and ate two full meals and a banana for breakfast today.  This is the most he has ate in a single day since the chemotherapy.  He has lost a lot of body hair, but has just started loosing some of the hair on his head this week.   Overall  he is very healthy and they are not concerned about the 20 pounds he has lost from lack of appetite. 

We had to compare our own thermometer and blood pressure cuff to that of the hospital, so we could check their accuracy.  I had to show the nurse I knew how to change his Hickman Central Venous Catheter dressing and flush his lines.  We discussed diet, symptoms, and how and when to call or take him to the emergency room if there is a concern. 

He noticed a small patch of red irritation on his left arm after his nap this afternoon.  The nurses have made a note of it and we all have to keep an eye on it in case he is developing Graft versus Host of the skin.  Her first reaction was, a little Graft versus Host isn't a bad thing.  While I have blogged about GvH and have mentioned it numerous times as something that is bad, there is truth in the nurse's statement.  This is called the Graft versus Cancer Effect.  Essentially, if any of Todd's bone marrow survived the chemotherapy, it can be attacked by the newly grafted bone marrow that came from his brother.  Todd's new bone marrow will think the old bone marrow is an invader and work to kill it, keeping the chance of relapse to a minimum.  As a matter of fact, they will periodically test to see how much of Todd's blood cells are from his old marrow versus the new.  The doctors can then manipulate the amount of immunosuppressants they give him to increase the Graft versus Cancer Effect if they feel there is too many cells from the old marrow that has survived.  This effect will work to eliminate or keep those cells to a insignificant trace.

I brought a small suitcase today to start packing up some things to take back to the hotel tonight.  Tomorrow will be a busy day.  We will need to finish packing up, meet with the pharmacists who will go over all the medications Todd will be taking on a daily basis, go over discharge instructions with the nurses and the nurse coordinator, and say our goodbyes to everyone, etc.  We already have a three page schedule of appointments set for the next three months to put in our calendar!  Finally, I can drive him back to the hotel and get him settled in.  By then, he will likely need a nap!

Nurse Visit part 2: Graft versus Host Disease (GvHD)

Graft versus Host Disease in a condition that can occur after an allogeneic transplant in which "the donated bone marrow view the recipient's body as foreign, and the donated marrow attack the body." (Cleveland Clinic Foundation, 2014).

It can be either Acute (aGvHD) or Chronic (cGvHD). Todd could get one, both, or experience neither. 

Since Todd is receiving his bone marrow donation from his brother, who is considered to be a "perfect" 8 of 8 point match donor, the risks of developing GvHD are somewhat lower. His young age also helps decrease this risk. 

If  acute GVHD occurs, it will usually show up when his brother's cells have "grafted" into Todd's body (within weeks).  Chronic GvHD can develop anytime, even years after the transplant. 

Acute GvHD usually develops in the skin, liver, eyes, or gastrointestinal tract.
Symptoms include:

Skin: rash or reddened skin

Liver: abnormal blood tests (liver) and/or yellow discoloration of the skin/eyes

Gastrointestinal: nausea, vomiting, diarrhea, or abdominal cramping. 

Eyes: increased dryness/irritation. 

Chronic GvHD can manifest itself in these same areas, but in additional places too including the mouth, lungs, neuromuscular system, and/or genitourinary tract (bladder/sexual organs).
Symptoms for these areas include: 

Mouth: dry mouth, white patches inside the mouth, pain or sensitivity to spicy foods. 

Lungs: Shortness of breath, changes in chest X-rays. 

Gastrointestinal: difficulty or pain in swallowing. 

Neuromuscular: fatigue, muscle weakness, or pain. 

Genitourinary: urinary frequency, burning or bleeding with urination, or penile dysfunction. 

Many of his medications can cause similar side effects making diagnosis difficult. Detailed tests and consultations with specialists will help distinguish the difference. Checking current results with baseline test results taken prior to the transplant can be helpful.

While GvHD can be deadly in some rare cases, most cases can be counter-acted with medications, though some can cause long-term side effects. Since Todd's brother is a perfect donor match, we are praying that the chances for developing GvHD are slim.

On the flip-side, GvHD does have some good benefits.  A slight case can be positive.  "The same immune response responsible for attacking your normal cells is also monitoring and destroying any surviving cancer cells."  (Cleveland Clinic Foundation, 2014). This is called the Graft versus Tumor Effect. In other words, Todd will have his brother's bone marrow in place of his own: normal, healthy bone marrow.  If any of Todd's original unhealthy bone marrow is still left, then Todd's new immune system from his brother will attack these old dysplastic or cancer cells.  Also, patients who develop GvHD have been shown to have lower disease relapse rates. 

So how can he avoid GvHD?  Using a perfect or best match donor's cells and giving him preventive immunosuppressant medicines after transplant.  Constant monitoring of symptoms is also imperative to diagnosing and controlling GvHD symptoms. 

A major time of developing or confronting GvHD is when the doctors take Todd off his immunosuppresant medications.  Some patients have to continue these medications for longer than the initial treatment time, sometimes for months, years, or indefinitely. 

I have done the best to describe GvHD as simple as possible.  I have used the information handout (Revised 2/27/2014) provided to us by The Cleveland Clinic Foundation in our transplant information binder.  Please follow this link to find this information online: http://my.clevelandclinic.org/services/Bone_Marrow_Transplantation/hic_Graft_vs_Host_Disease_An_Overview_in_Bone_Marrow_Transplant.aspx

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.