Day +42: Frozen Shoulder update

Todd has his appointment with a Orthopedic doctor at the Cleveland Clinic on October 27, 2014.  He reviewed Todd's MRI results and concluded that there was a tear in the Glenoid Labrum tendon in the rotator cuff and an area of his shoulder joint was dented from a prior dislocation (at age 16 when Todd was sliding into home base!) which is called a Hill-Sachs deformity. He described the injury like the humeral head (pictured above) is like ping pong ball and when the dislocation happened it puts a dent in it.   Todd's is not serious enough for surgery and it is likely he has been living with this with no serious problems since that time.  Neither of these two discoveries are responsible for Todd's frozen shoulder in his opinion.  He is not sure what caused this to happen.  He said it is common in people with diabetes; one day they can wake-up and have a frozen shoulder for no reason. I think it is from the Neupogen.  He said it was possible. 

The frozen shoulder has loosened up considerably on its own with messaging, hot showers, heat, and doing some exercises we found on YouTube.  To get his range of motion back to normal, the doctor recommended physical therapy.  He will have an evaluation done by a physical therapist at a nearby Cleveland Clinic location in Avon Lake on November 11, 2014, who will recommend further treatment at that time.  He will follow-up with the orthopedic doctor on November 24, 2014, at the Main Campus of the Cleveland Clinic.  He also recommended heat and/or ice, whichever works best.

Meanwhile, I can't say enough about these exercises we found on YouTube.  They are the same ones recommended to us by the Orthopedic doctor in a brochure he gave us.  So, if you ever have a frozen shoulder, I highly recommend you check out this video:  
  
http://www.youtube.com/watch?v=TE3AF_NOw4s

But, I'm no doctor! So, as in all medical disclaimers-check with your doctor!


More information:
Hill-Sachs: 
http://orthopedics.about.com/od/instabilitydislocations/qt/Hill-Sachs-Defect.htm

Intimate relations post-bone marrow transplant

Oftentimes, I begin writing a blog with an idea of what I want to say, when instead I start typing and something totally different comes out.  Today is one of those days!  I wanted to only give an update on how Todd was doing, but then the issue of intimacy came to mind.

At yesterday's treatment appointment (Day +41), Todd's blood work showed that his platelets went up to 50,000 which is a milestone than many patients and spouses look forward to reaching.  No intimate sexual relations are allowed with platelet counts under 50,000, so this is a positive step in returning back to a normal life.  Cancer can put a real crimp in married life or with any intimate relationship.  Chemotherapy drugs and side effects can be transmitted through intercourse. Many patients have had months of chemotherapy prior to transplant, making this a concern for a long period of time.   I can't speak from a female with cancer's point of view, but according to the Cleveland Clinic's handout on sexuality post-transplant, many women experience vaginal dryness and/or changes in hormones.  (Cleveland Clinic Foundation, 1995-2012).  According to a Danish Study reported by the MDS Beacon, there is also research that suggests that some transplant patients suffer from some type of sexual dysfunction, including increased erectile dysfunction in men. (MDS Beacon, 2011).

While this is a personal subject, it is an issue that must be addressed.  Regardless of any prior birth control measures, condom use is recommended post-bone marrow transplant to prevent transmission of dangerous medication side effects to the spouse, and to prevent even the slightest possibility of a yeast infection. (BMT patients are highly susceptible to any kind of yeast infection anywhere in the body). To make light of the situation, it was funny to be 45 years old, married 23 years, with Todd having had a vasectomy 10 years ago, but still having to buy condoms!

Both the BMT patient and the spouse can have a mixture of fears and feelings when it comes to their intimate relationship.  After recently speaking with another wife of a transplant patient, the lack of sexual intimacy for months can bring feelings of sadness and loneliness.  Being the caretaker, the spouse often feels more like a nurse of a fragile child instead of an intimate spouse.  Kissing alone can be scary for the spouse, for fear of spreading the simplest of germs.  For the transplant patient, stamina, fatigue, and overall energy levels are low to begin with; thoughts of intercourse can be more challenging. Some experience sexual dysfunction or for women, vaginal dryness which can add frustration to the situation.  (MDS Beacon, 2011).  Then, there are self-image issues to deal with.  The loss of hair and/or weight/muscle, can leave the patient feeling less sexually attractive.  

The good news: For most patients and spouses, "This too shall pass."  As blood counts comes up, energy levels come up too.  Once platelets reach 50,000 or greater, sexual intercourse can resume when the patient feels ready for it.  Hair re-growth and weight gain will eventually return to normal adding self-esteem along the way.  There are many medications that doctors can prescribe for dysfunction or hormonal issues.  Patience is key!

For more information:

Cleveland Clinic Foundation (1995-2012). Resuming Sexual Activity after Bone Marrow Transplant.
https://my.clevelandclinic.org/health/treatments_and_procedures/hic_Bone_Marrow_and_Transplantation/hic-resuming-sexual-activity-after-bone-marrow-transplant

MDS Beacon (2011). High Rates of Sexual Dysfunction. Retrieved from: http://www.mdsbeacon.com/news/2011/09/15/high-rates-of-sexual-dysfunction-reported-after-stem-cell-transplantation/

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. 

Day +27: Blood transfusion needed

I Today, October 13, 2014, Todd had to go to his treatment appointment right after his doctor's visit. (It's usually the other way around). 

Today, his orthostatic blood pressure and pulse were fine; no IV fluids were needed, but he did need a blood transfusion because his Hemogloblin at 8.5, below the 9.0 outpatient threshold level.

The rest of his counts were steady but still below normal. Whites: 2,610; ANCs (neutrophils) 2,050; and his platlets are at 19,000. 

It took about half of the day to get through this appointment. Blood work, and blood typing and matching alone took hours. This is an important step, because the blood he receives for transfusion has to be screened so that it doesn't interfere with any of Todd's antibodies. 

He received two units of blood and someone from pulmonary came down and gave him his breathing treatment of Panti.

Before we left for the day, the bone marrow transplant scheduling department had scheduled his X-Ray  immediately following his transfusions today and the MRI for October 21, 2014. 

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 +24. First Outpatient Treatment post BMT

Todd's first outpatient treatment appointment was at the Taussig Cancer Center this morning, October 10, 2014 at 8:15am. We didn't know what to expect at this appointment except they were going to do lab work to check his blood counts, magnesium level, potassium level, and Tacrolimus level. Tacrolimus is a immunosuppressant they have Todd on to help him from developing a serious case of Graft versus Host Disease. 

Our nurse introduced us to the treatment center and the treatment procedure when he comes in for a visit. First they took his vitals. No fever! This is always a praise. 

Then, they had to take his blood pressure sitting and then standing. If his blood pressure drops more than 20 points or if his pulse drops from sitting to standing they consider him dehydrated and they have to give him IV fluids. This was the case today. His blood pressure was 110/65 sitting but dropped to 90/50 when he stood up. 

She told him that the new requirement for liquid consumption is now 2- 2liters of water per day. This does not include any decaf coffee or tea either. He can count Gatorade and some juice in that total. 

They drew bloodwork and we were so happy to hear the results about 30 minutes later. Outpatient requirements or thresholds for counts are a bit more tough. Hemogloblin has to be over 9.0 instead of 8.0 to avoid a blood transfusion. Todd was at 9.5 today!  

His white count was 2,610; ANCs were at 1,680; and platelets were at 15,000. (So happy his marrow seems to be making enough!). 

It took about 2 hours to get his IV of fluids. By then his magnesium and potassium levels were back; both levels were within the acceptable ranges. Potassium was at 4.4   Infusions are given if levels are at 3.3 or less (normal is 3.5-5.0 mmol/L).  His magnesium was at 1.6. Infusion is given only if it is 1.3 or less. (Normal range 1.7-2.6 mg/dL). 

Todd's next appointment will be Monday. He will go through treatment screening again and receive anything he needs. He will also be getting a breathing treatment of Pentamidine to help prevent infections. The last one he had was done shortly after admission. He has to have this treatment as an extra precaution along with Amoxicillin since he can't take Bactrum (a suspected drug allergy).  He will also have his weekly appointment with his bone marrow transplant doctor. 

He has three appointments scheduled each week through the end of November. He will go down to two appointments per week in December. 

Day +23 First full day out of the Hospital

We started off the day by sleeping in!  We ate a small breakfast and he took his morning meds when his brother Tom (bone marrow donor) came up for a visit! We sat around and talked until about 2:00 pm when we left to go to the nearby Crocker Place (outdoor mall) for lunch and a walk. 

We ate at The Cheesecake Factory and walked in the sunshine. Next, we went to Trader Joe's store to pick up some food for dinner. And then, we drove through the lakeside town Bay Village to get a view of the lake. 

There was a small park by the lake so we got out to see the view. There was a waterfall and steps leading down to the beach. We had to get a glimpse!  It was pretty taxing for Todd to get back up the steps but I made him rest. 

He took a nap while Tom and I visited. Once he got up I took his vitals and flushed his Hickman catheter lines. We ate dinner and then it was time for Thursday Night Football!  Tom and Todd had a great time bonding over football. 

We are so grateful for Tom's donation and for his visit today. Such a great time of fellowship. 

Todd with his brother Tom watching football. 

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. 

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!

New Mailing Address for Todd at the hotel

Since we are anticipating Todd being discharged sometime in the next few days, please send any gifts, cards, or mail to Todd at the hotel from here on out:

TODD CADE, Room 121

c/o Marriott Townplace Suites

25052 Sperry Road

Westlake, OH  44145

Please call me if you are interested in visiting.  We appreciate your support!

Ready for Discharge? Blood Counts are Climbing!

Todd was unhooked from his IV pole today, October 5, 2014. He gets hooked up for some medications and transfusions,but they are switching him over to pill-form of most of his medications, getting him ready for discharge this week.

On October 4, 2014, Day +18, Todd's blood counts were not only climbing, but his white blood counts and ANCs (neutrophils) more than doubled!

 On Friday, October 3, his white count was 360.  On Saturday they jumped to 970.  The goal for discharge from the hospital is 1,000.

His ANCs on Friday were pretty much non-existence and on Saturday they jumped to 890!  The goal here for discharge from the hospital is 500.  So you can see he has already cleared this hurdle! 

While his Platelets were still only between 6,000-7,000 the past three days, there was already talk of him being discharged as early as Monday!  Neither of us was prepared for this.  I started gathering unnecessary items to take out of his room and made plans to prepare the hotel room for his arrival.
 
By today, Sunday, October 5, 2014, Todd's CBC blood counts were: Hemoglobin 8.2, Whites 1,630, ANCs 1490, and Platelets at 7,000. Unfortunately, this meant once again that he had to receive platelets.  Since the transplant Todd has had a total of 11 platelet transfusions.  We were under the impression that since there was no restriction for being discharged with low platelets, that Todd could just get platelet transfusions through outpatient visits.  However, the doctor stated today during her rounds that Todd would NOT be able to get platelets daily on an outpatient basis, so he may have to stay in the Hospital longer until his body can start maintaining his platelets after infusion (or are creating them) for at least a couple of days at a time.  Now that his white counts are multiplying they can start doing their job to allow his body to start cranking up the bone marrow to make platelets.

I'm planning on talking to the doctor tomorrow about this situation.   How many more days does she estimate this is going to take?  Can she push again for the HLA matched platelets again?  (The latest on this saga: not planning on giving any HLA matched platelets at all). Can she request platelets from a single donor instead of a bag of platelets combined from multiple donors? Would this work better?

I'm a little frustrated that they got us all excited that he could be discharged tomorrow, when he may have to stay several days longer.  Why didn't she say anything about the platelets before telling us he could leave Monday afternoon? 

Well for now we are content to stay if he has to.  We are still excited that he is doing so well and that the time to leave the hospital is drawing near.  Meanwhile, I will continue my nursing training on taking care of his Hickman Central Venous Catheter and preparing for him to come to the hotel with me.  He is looking forward to good food and sleeping in a big bed.  I'm looking forward to doing things together like eating meals together and going out. 

This is "Chester" the bust caregivers can use to practice Hickman Catheter care like changing dressings, caps, and flushing the lines.

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/

No Platelets for Todd on Day +14--Cleveland Blood Bank cites shortage

On Day +14, September 30, 2014, Todd's CBC blood counts were:
Hemoglobin: 7.8, White Blood Count: 70, and Platelets: 8,000.   Technically, he needed a platelet transfusion since his platelet count was under 10,000 and a blood transfusion since his Hemoglobin was below 8. 

Unfortunately, the Red Cross Blood Bank located within the Cleveland Clinic denied Todd platelets because of the platelet shortage they are experiencing.  (Did did receive a blood transfusion).  I was upset by this news and asked the doctor on call to come by his room to discuss this me. 

First, let me say that the doctors here are great advocates for their patients and argue our case for whatever they need to the blood bank.

Q.  I asked him why they denied him platelets?
A.  His response:  They denied him based on the concern that they have been giving him platelets daily, but that he wasn't retaining them.  In light of the shortage, they felt they didn't have enough to spare if his body was going to remove them and/or his body wasn't retaining them.

Q.  I asked about using the HLA matched platelets that he had requested?
A.  Apparently, they still were not able to provide them. 

Q.  Next, I asked if I could donate blood for platelets or if his brother, who was the bone marrow donor, could give blood/platelets that way? 
A.  He said that this was  not easy to do because it is very cost prohibitive and that there are too many clerical errors made in labeling and getting the donated blood to the correct patient.

Q.  I asked him how low did his platelets have to drop for it to be critical if he didn't get a transfusion? 
A.  His response: He stated that there was no set number they had to drop to where the Blood bank could no longer deny him platelets.    He explained that Todd's body would eventually be able to make and retain his own platelets once the new bone marrow is more engrafted. The decision is based on their own judgment.

The next day, Day +15, Wednesday, October 1, 2014, a new doctor was on rotation.  Todd's CBC was HBG: 8.5 (so no blood transfusion was needed) and his white count finally hit triple digits: 130, but his platelets were down to 6,000.  There was talk about giving him the HLA platelets, but not until next Monday, October 6.  I'm not sure the reasoning, either they felt he would be in a better place to keep them then or that they wouldn't be able to get them until them.  We were surprised when his nurse came in late in the morning saying he was getting regular platelets that day.  We asked what had changed, but she didn't know.  The doctor on rotation came in and explained that as the advocate for the patient, they argued again and did testing to prove that Todd's body was not creating any anti-bodies that was killing the infused platelets (This can happen because the body thinks that the platelets are a foreign invader and try to kill them).  Since the blood bank had this proof and reassurance, they were more receptive to the request for platelets. 

Yesterday's transfusion must have worked, his platelets went from 6,000 to 9,000 today (Day +16) October 2, 2014.  His white count jumped to 300! But his Hemoglobin was down only slightly at 7.9, which meant he needed both platelets and blood today, but thanks to the great doctors on staff here and the tests they did, he received both with no problems.  We are hoping the white count will start doubling at this point.  This gives him greater immunity to infections. 

We are all hoping to be released from the hospital one day next week, October 6-10th, Days +20-+24.  While this are the number of days since the transplant, we have actually been at the Cleveland Clinic for 25 days already.