October 24-25, 2016. On our own; Out of the Hospital

I can brag now that we made it through the first night out of the Hospital, October 24! We survived one full night outside the hospital with no fever! Thank God. I was afraid to post last night that Todd was discharged from the hospital; there was a slight delay as he developed a rash on his torso. After examinations, the doctors thought it was a reaction to the oral antibiotics they started him on before discharge. So, they changed the prescription and we were off out of downtown Houston and onto a 5 lane highway going 35 miles per hour heading towards Pearland, a suburb south of Houston.

Our hotel is great! The beds so comfortable. We got dinner and slept in late. No fever!

We learned yesterday, October 25, 2016, that the Bone Marrow Transplant Team/Lab processed the blood from the kids and Todd's other brothers for the bone marrow match. All of the kids were a match, but Abby was the closest match.  Todd's half-brother Paul was also a good half match, but not quite as close as Abby.  At first the Transplant Team wanted Abby out here this week! As soon as we started making plans to fly her out, they informed us that they had not received the needed insurance approval to run the tests on Abby, the donor. So we are hoping to get her out here early next week. Thanks to all who have donated to the Go Fund Me Account; now we can fly Abby out here and house her with us.

Our second day at the hotel, Todd did not get out at all.  I had a difficult time getting him up or awake in the morning and afternoon, so I called the nurses' line.  They told me to keep an eye on him and bring him in if I felt uncomfortable with his excessive sleeping.  By early evening, he ate some dinner and sat up in bed the rest of the night to watch TV, including the first game of the World Series in Baseball (cheering for the Cleveland Indians over the Chicago Cubs!). 

Leaving the Hospital after being admitted for Fever.

Day +66: New Bone Marrow Not Engrafting; risk of Transplant failure

Todd's treatment appointment today, Friday, November 21, 2014 started out a bit disappointing. His blood counts have not been going up like they should. As a matter of fact, they have dropped. His whites went down to 3,080; his hemoglobin to 10.6, and platelets down to 37,000 (a few weeks ago they were up to 58,000).

Then the doctor called us about 5:00 p.m., while we were driving home from Cleveland with the results of Todd's latest chimerism numbers from the blood tests they drew on Monday.  More bad news. Instead of his original bone marrow going down to the 0-5% they need to be, they went up!  To refresh every one's memory: The day he left the hospital (October 8) his original bone marrow was at 49% and his newly donated bone marrow was at 51%. The next set of results at Day+49: Todd's original marrow had dropped to 28% and his new marrow increased to 72%.  These results were slow, but good. At least they were headed in the right direction. This week's results:  Todd's original marrow went up to 50% and his new marrow decreased to 50%.  This is not what the doctor had expected.  This is a serious indicator that his newly donated bone marrow is not engrafting. Instead, his original marrow is growing back and taking over.  This may lead to a bone marrow transplant failure.  In this words of his doctor, this is not a rare occurrence, but it is not the common result, which should be full engraftment (New marrow at 95-100%). 

So, what does this mean?  That's what we are unsure of.  Unless they can get his original bone marrow to go back down and his newly donated marrow from his brother to engraft, Todd will likely relapse and have to have further treatment. 

While this development can be fatal if it happens earlier after transplant, this isn't the case at this point.  In that situation the body thinks the new marrow is a foreign invader and tries to kill it not knowing that the chemotherapy would have likely wiped-out all the original marrow, leaving the patient with no marrow and therefore no way to make blood cells.

What's likely happening now in Todd's case is that for some reason Todd's body may have developed some kind of anti-bodies or resistance against the new marrow and is attacking it and taking over (or many other possible reasons that are too technical to understand and explain here).   At least Todd's original marrow is producing some blood cells and the new marrow is producing the other half the blood cells.  The whole purpose of the intensive chemotherapy was to kill Todd's marrow which is not healthy, cancerous, and can't produce enough mature healthy cells.  The purpose of the transplant was to replace the bone marrow that would produce new healthy blood cells with normal blood counts.  If this doesn't occur it is considered a Bone Marrow Transplant failure and can result in a relapse of his disease: MDS.

There are several things that can be done for Todd, but at this juncture, the doctor is opting for the simplest solution: to ween him off  the rest of his immunosuppressant medication (Tacrolimus).  Last week his doctor changed his medication from 4 capsules per day to 3, because his numbers had dipped some.  Tonight, she told him to cut it down from 3 capsules per day to just 2 per day.  She will likely drop them down again next week when we go back.  She said there is still hope that this will allow Todd's body to develop some Graft versus Host Disease to suppress the existing original bone marrow and allow the new to engraft. (See posts on Graft versus Cancer/Leukemia Effect).  So far, Todd has been doing great, maybe too great.  He has had little side effects, little to no symptoms of Graft versus Host Disease, no rashes, no digestion issues, no severe eye dryness, no infections, etc.  He needs some for the Graft versus Cancer Leukemia Effect to work.

This is where God comes in and how you can help!  We desperately need your prayers, that this simple reduction in medication will be the answer to this problem.  This is a critical time.  This needs to work in the next few weeks or it may be back to the drawing board for other, more difficult solutions. 

To gauge how the re-development of the former marrow is effecting his counts, his doctor has also suggested moving up the post-transplant bone marrow biopsy from the +100 check-up point to about Day +80.  She wants to see if the re-growth of his original bone marrow has developed any cancerous blast cells.

To think about the possibility of further re-treatments after everything he has been through is just too much for us to wrap our heads around.  The possibilities could include: another transplant of his brother's stem cells with another new 100 day period of watching and treatments; a new round of different chemotherapy and another transplant from his brother's cells; or another round of chemo and/or transplant with an unrelated donor's cells with the same 100 day follow-up.  I'm trying not to worry about these possibilities and neither is his doctor. 

While it has only been +66  days since the initial transplant, we were in Cleveland for 8 days before that.  Todd spent 31 days in the hospital, endured intense chemotherapy, isolation, nausea, diarrhea, fatigue, lack of appetite, and lack of friends of family.  I have spent around 68 days living in an hotel room/suite, driving to the hospital for 12-14 hour visits or some days overnight visits, away from our home, our three daughters, friends, family, and yes my dog!  Our children have had to be away from their parents and worry about their dad, my poor mother had to be away from her home and my dad while trying to fill my shoes all that time (a job well done, but not for the faint of heart).  Todd and I have had no ability to work or earn an income but instead have had multiple households and expenses to pay for. The thought of doing this again would be too difficult to put into words here.

I guess we will learn more on Monday when we go back to see the doctor.  They will draw blood for another chimerism study in addition to checking his regular CBC counts.  We are blessed that the dropping counts have not yet resulted in the need for any transfusions. 

In the meantime, will you pray?  This journey has been full of ups and downs and twists and turns.  I feel like God is asking us to let go of everything else and trust him completely.  I have been applying for jobs, with no response. The one job interview I had scheduled (for seasonal work) was canceled tonight because they had just finished filling all their openings.   I want to cry out to God: "Why we can't we catch a break!  Why are you allowing things to go wrong? Why are we suffering such financial losses and the loss of things that make us feel secure?"  I want to tell God that "No, I really can't handle anything else!"  But, I know he is trying to teach us through these trials to solely rely on him.

Next week is Thanksgiving.  I want to give Thanks for the lives of those I love and the good health that he has blessed us with.  I understand that every good gift surely does come from above.  Thank you Lord. 

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. 

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.