Ray's BMT Journey

It is a little late,

2009-11-25T11:12:00.037-05:00

but, I realized that I hadn't updated this since before the 2nd bone marrow transplant.

As I alluded to in April, Ray's 1st BMT failed to engraft. Because over 60 days had passed from the transplant, they decided to do another full transplant with chemo and everything. Unlike the first transpant, Ray suffered from day 1. The second transplant caused him to get Lymphoma and another type of pneumonia. The lymphoma attacked his intestines and kept him from being able to eat. Finally after about 5 weeks of no food, they put him on TPN (IV nutrition).

On Father's day, we almost lost him. I had left on the Thursday before, to visit my father and Ray was doing better. We even had him walking with a walker. He promised me that he would be even stronger when I returned Sunday evening. However, the morning of Father's Day, I received a call from the PA saying that I needed to hurry back if I wanted to say my goodbyes. I don't think that I had ever been so scared in my life! When I reached the hospital, Ray didn't seem to recognize me. He had a tube down his nose to keep the fluids from backing up in his stomache. This was making it difficult to keep his bipap mask on for his sleep apnea.

The doctors warned me that his breathing would probably continue to deteriorate and we would have to decide whether to put him on life support. They explained to me that most patients from the BMT unit don't ever make it off life support and that if he did, he would not have a very high quality of life. They were basically telling me that it would be kinder to just let him go. I wasn't giving up that easily though. I made the remove the tube to his stomach so that I could get his bipap mask on correctly. I then sat by his side and prayed the entire night. By the next morning, his oxygen saturation was beginning to improve and he recognized me. They had to put the tube back down into his stomach to keep the fluid out, but, he continued to improve over the next few days. We were even able to have a little Birthday party for Alex in the Bone Marrow Unit.

Unfortunately, a few weeks later, the lymphoma perforated Ray's bowel, forcing them to conduct emergency surgery. They warned us that the chances were slim that he would make it through the surgery. But, they did not know my stubborn husband and God's will. Ray not only made it through the surgery, but made it through a second bowel perforation and surgery a few weeks later. In addition, he made it on and off life support throught the month of July.

Due to slow engraftment, Ray was given several boosts of his brother's stem cells. Finally in August, they discharged him to our apartment in Gainesville. Ray was doing pretty well. He was walking with the assistance of a walker and started physical therapy. However, after a week, his left knee started swelling and giving him agonizing pain. Then one day when we were leaving the clinic, Ray slipped and I could not keep him from falling. During the fall, he twisted his knee and he had to be re-admitted. Ray was convinced that he was never going to make it out of the hospital.

Over the next couple months, we tried moving Ray to an acute care hospital (which was a total joke) and a skilled nursing facility. It soon became apparent that there was something else wrong, because Ray was loosing weight very quickly (240 lb in Aug. to 144 lb in Oct.). The doctors determined that Ray was suffering from Graft vs. host in addition to the Pure Red Cell Aplasia, Cirrhosis of the liver, iron overload, lymphoma, pneumonia and knee injury.

In October, I had to move back home and go back to work since our Cobra was getting ready to run out. It was so difficult to leave Ray up in Gainesville. He would call me crying, saying that he was going to die up there all alone. I was completely torn between being home with my kids (whom I had been away from for 9 months), my job and Ray.

By mid October, I had Ray re-admitted to Shands. Within days, he seemed to be doing soooo much better. We actually had a birthday party for him on November 17th and took him outside to watch the kids play. After we left, he called me at least 10 times saying how wonderful his birthday party had been! Ray was obviously feeling better as evidenced by this video he created for me:
http://sendables.jibjab.com/view/eaztLMcNZuAAsy41

A few weeks later, Ray was moved into the new BMT unit at Shands. I was in Pittsburgh so, I didn't get to see his new room, but he said that it was just beautiful. He would get so excited everytime a helicopter would come by his window (he was on the top floor) to land on the roof! A couple of days later, I was told that Ray was going to be able to transfer him to a hospital in Tampa so that he could be closer to home while he went through the rehab to learn to walk again. He was scheduled to be transferred that Friday (Nov 6th) at 10am.

The night before (Nov.5th), we must have called each other 10 times, we were so excited! Then, Friday morning at 5am, Ray called me to say that he had an excrutiating pain in his shoulder and he did not think that he would be going anywhere this weekend. The nurses loaded him up on pain medicine and scheduled him for an x-ray and CT to determine the source of the pain. A few hours later, he called to say that the pain was spreading and that he was really worried that they were not taking him seriously. I spoke with the nurse and she assured me that everything was under control.

From the airport, I called Ray and spoke to his mother. I could hear Ray's breathing in the background and the alarms on his machines going off. His mother told me that they had been going off for over a half hour and the nurses would not come, even though she had paged them several times. I called the nurses station and spoke to the charge nurse who tried to tell me that the beeping was because wasn't keeping his oxometer on. I wasn't buying it, so I asked to speak to the PA. He said that he had been in there earlier in the morning and that Ray should be going down for the CT scan. I told him that I thought Ray was getting worse and I wanted him to check on him.

A few minutes later, Ray's mother called to tell me that the doctors were in the room and that Ray's Oxygen Saturation levels were in the 80's even though he was on oxygen. I could hear the doctors in the background trying to get Ray to keep his mask on. The next thing I know, the doctor is on the phone asking my permission to put him on life support. I said, "Yes, do everything you can to keep him alive until I get there!" For some reason, I thought that if they could just do that, I could pray and will him into recovering as he had all of the other times.

Unfortunately, I could not get a direct flight, so, I did not land in Tampa until 7pm and then had to drive to Gainesville. The moment I walked into the hospital room, I knew it was too late. His body was being kept alive by machines, but he had already joined the lord.

I think someone is trying to send us a message...

2009-04-27T18:43:00.003-04:00

Ray and I "snuck" down to Palm Harbor Friday night so that we could attend my niece's 1st Birthday. She looked absolutely beautiful and the kids were having a great time. Then, all of a sudden, we hear the back screen door slam and loud screaming from my 2 year old. At first we thought that he had just pinched his finger in the door. But, after we saw blood pouring down his arm, we found that he the door had caught his left pointer finger (he is a lefty) at the henge and when he pulled his arm back, the end of his finger was cut off.

Thankfully, my brother was able to recover the missing piece and brought it up to us so that they could sew it back on. About 4 hours later, we left the hospital with his finger stiched and wrapped up tight.

Today, I took him to his follow up appt. with the plastic surgeon. As she unwrapped the final layers of gauze, we both gasped at the same time. My sons tiny finger was a peculiar shade of grey. She immediately sent us to an orthopedic hand specialist. He put a soft cast on his arm, leaving a sort of open cone around the end of his hand to protect his finger from hitting anything, but allowing circulation. He thinks that we caught it in time to save his finger, but, we won't know until it starts to heal.

It seems like every time we try to take a break from the transplant, something bad happens. hmmmmm.

Are you kidding me!!!

2009-04-18T10:40:00.002-04:00

I probably shouldn't be blogging today, since I am so frustrated. Ray's numbers have been dropping over the last couple days. He had to have a platelet transfusion yesterday and red cells today. The doctors are concerned about a possible brain infection, so we were at the hospital til almost midnight last night so that they could do an MRI of his brain.

To add more stress, Logan (our 4 year old son) had a nocturnal seizure last week and after an EEG and meeting with the neurologist, he was diagnosed with Benign Rolandic Epilepsy. The good news is that they said that if you are going to have Epilepsy, this is the best type to have. 95% of children outgrow it by their mid teens. The bad news is that the medicine they put him on has him flying off the walls. I felt that he needed us right now, so, he is up here in Gainesville with us for the next couple days.

Things have got to start improving around here!!! We will just have to keep our faith in God and keep praying!!

Another bump in the road

2009-04-10T13:26:00.003-04:00

Well, Ray is now 51 days out from his transplant and the last few weeks have gone pretty smoothly. However, today we informed that the stems cells should be 100% engrafted, but they are only 12% engrafted. They are going to taper him off of his steroids to see if that helps. If it doesn't start engrafting, they will have to give him another set of his brother's cells.

Needless to say, Ray is devastated. His platelets and red blood count have dropped and he is feeling like this was all for nothing. I have to admit, that this is definitely not the news that we had hoped nor prepared for. However, we have to keep our faith in God and trust that he will heal Ray. Hopefully the news will be better next week.

Now that we are on the other side of the mountain...

2009-03-24T11:17:00.003-04:00

I figure it is time to catch up on this blog. The last 3 months have been crazy, but worth it! After coming home from Orlando, Ray was brought up to Shands for his pre-transplant work-up. We thought that he would be going home for a couple weeks before they would let him go to transplant, but he basically had one weekend and then he was admitted for the actual transplant on February 13th.

The first couple weeks went quite smoothly. He received his chemo conditioning regimen up til the 17th and then he received his brother's cells on the 18th. He went the first 8 days without showing any real complications. I think we both began to relax a bit, and then, in a one-two punch, Ray developed pneumonia and had to be placed on extremely high doses of prednisone. By this time, he was feeling the effects of the chemo and his kidneys started shutting down. As a result, he was in agonizing pain and was placed on high doses of morphine. Between the halucinations from the morphine, the pain the lack of sleep (he was placed on oxygen, but they did not hook it up to his bipap machine for 72 hours), and the high doses of prednisone, he went into drug induce psychosis for about 4 days.

In the middle of this, my company decided that due to the state of the economy, they would have to cut the sales team outside of California. We quickly negotiated a contract for me to be an independent sales consultant, but, I lost my base pay. I think Ray was secretly relieved that I would not have to answer to an employer for a while so that I could focus on him. I, on the otherhand, was not so relieved. I had left a stable position (albeit, lower paying) to work for my former boss from Pearson again (he had recruited me to this new company) and to represent a product that I was extremely excited about. For now, I am continuing to work the deals that I had developed with TeleParent, while passively looking at other opportunities.

I think that week was an all time low for Ray and I. God must have realized that we needed some hope, especially as we had hundreds of people praying for us, and Ray quickly turned around the following week. By the following Monday, the doctors were saying that Ray would be getting out of the hospital by the end of the week.

On Thursday, March 12th, one month after being admitted to the hospital, Ray was discharged from the hospital. He moved into the apartment that we had rented in Gainesville. For the last week and a half, he has steadily improved, even getting a pass last weekend from coming into the hospital. Our kids came up to visit, and while it was a bit overwhelming for Ray, he was very happy to see them after a month.

Today we came in (Tuesday) and they said that he does not have to come back in until Friday. Whoohoo!!! His counts are holding and he is doing great.

Jan. 23, 2009 Update

2009-01-23T23:02:00.003-05:00

Ray came over to Orlando with me to attend a conference. We brought the kids and planned on seeing the Blue Man Group tomorrow night with the kids. Unfortunately, his arm started hurting and swelling, so we went to the ER. It turns out that he had a deep blood clot in his arm from his pic line. The doctor decided to remove the pic line and admit him for the night to try to break up the clot (to prevent an embolism). Of course Ray's main concern was whether he would be out in time for the Blue Man Show. The doctor said, "yes, if the clot goes away in time."

We head back up to Shand's Monday evening for his BMT work-up. Hopefully this won't delay the transplant again!!!

New Year's Update on Ray

2009-01-04T10:53:00.004-05:00

Ray finished up 6 weeks of chemo around December 19th. His doctor called on Christmas Eve with Ray's latest lab reports and said that it looks like the chemo did not work. He will be taking Ray's case back in front of the Bone Marrow Transplant Board in January.

Obviously Ray became extremely depressed over this news, so we all did everything we could to cheer him up. Ray's biggest wish was to see snow, so, I booked us a week's stay at a family resort ranch in New York. We flew to New York the day after Christmas. We spent 5 days at the resort horse back riding, snow skiing and tubing, enjoying shows, good food and campfires. On our last day, we drove into the city and saw the sites with my cousin and her partner. This was the most energy and fun I had seen Ray have in a very long time! We had a blast.

We are now home recuperating from our trip. Ray wanted to stay longer, but it was time to come home and face the music. We ask for your prayers in Ray's next step in this journey.

Week One of Chemo

2008-11-12T22:30:00.002-05:00

Ray received chemo on Monday and today. So far he is very sore (muscle aches) and exhausted. They added some steroids to his infusion today and that seems to be helping the aches. We are optimistic and praying that this works!

Back on the Roller Coaster

2008-11-03T07:35:00.004-05:00

Well, after being derailed for a couple weeks, we finally heard from Shands late last week. Ray's doctor wants to try one more type of chemo for 6 weeks before moving to transplant. Of course my insurance denied the claim, so now the BMT team has to fight our insurance company. Fun, fun, fun!

They decided to try the new chemo because they are still very concerned about the transplant. The doctor said that if they blast his immune system too hard, he could go into liver failure. But, if they use a lower dose chemo, his own immune system might come back and fight the transplanted immune system. So, we are praying that this last round of chemo will prevent him from having to go through the transplant. Now we are just waiting for insurance approval and then we will be heading to Shands for 6 weeks.

Not so good news :(

2008-10-22T20:37:00.002-04:00

We finally heard back from Shands today and the liver doctors did not like the looks of Ray's liver. Now he has to get another liver biopsy. The case manager did not seem very optimistic. It looks like there is a good chance that he will be turned down for the BMT.

I am frustrated, because MD Anderson in TX had already agreed to take him and we went with Shands because it was in Florida. Now it looks like we might have to move to TX for a 4-5 months if we have to go to MD Anderson. :(

Year Four

2008-10-19T12:48:00.000-04:00

Summer 2008 to October, 2008

Summer
By the end of the Summer, Ray's ferritin was down to 2600 and his ALT was 43.

Fall
Ray was scheduled to have his BMT workup the last week in September. They planned to hospitalize him Oct. 10th and Oct. 17th would be Day Zero for his BMT. Unfortunately, on the second day of Ray's evaluation, it became apparent that his port had an infection. It was determined that he needed emergency surgery to remove the port. Ray spent the next week in the hospital on IV antibiotics and for Gram Negative Rods Infection and Serratia. After running a 104 temperature for several days, the infection finally started to go away.

Last week we returned to Shands to complete Ray's BMT workup. We are now waiting for the word to move forward with the transplant.

Year Three

2008-10-18T10:25:00.001-04:00

Summer 2007 to Summer 2008

Summer

Ray went back to Dr. Perez and the BMT team at Moffit at the end of the summer. Once again, she felt that not enough had been done to treat Ray and suggested that he try other immunosuppresive therapies. Ray had given up going to Dr. Sokul by this time, because everytime we went to see him, it was as if it was the first time he had met Ray.

Fall

Logan's 3rd Birthday

After Ray was rejected by Moffit's BMT team for a second time, we asked for a 2nd opinion. We met with Dr. Cogle at Shands. He agreed that we should try a few more therapies, but that we shouldn't wait too long, or Ray's organs might start sustaining too much damage to do the BMT. Ray's Ferritin had increased to over 5000, so Dr. Audeh finally put him on a subcutaneous pump for desferal 24hrs/5days a week to help his iron overload.

At the end of October, Dr. Audeh put Ray on Rituxin. Thankfully, somebody donated 3 rounds of treatment at $5,000 each (our insurance refused to cover it). Unfortunately, Ray got a bad infection from the subcutaneous pump and had to discontinue the 24/5 desferal. Ray was kept on Exjade and received Desferal via IV after transfusions, but this did not seem to be helping.

Winter
In December, we finally got sibling match results from Ray's brother and sister. They were both a perfect 10/10 match. The BMT team said that they would explore the option of a transplant, but that he needed to get his diabetes and iron overload under control.

Christmas 2007

Spring

That Spring Ray met with Dr. Kulman to have a port placed in his chest so that he could receive 24/5 Desferal iron chelation. The surgery was schuled for the beginning of March, but had to be postponed due insurance issues (my company was bought out by another company and our Cobra was not set up in time for the surgery).

Barbados March 2008

The Port was finally placed at the end of March and Ray was placed on 24/5 Desferal. By that time, Ray's ferritin had increased to over 7000. Ray was scheduled to have a BMT at the end of May. However, during his BMT work up in April, Ray's liver enzymes were elevated with his ALT being 166. As a result, Moffit decided to perform a liver biopsy. on May 21st, we were informed that Ray was no longer a candidate for a BMT because he now had cirrhosis of the liver from all of the iron overload. Dr. Perez said that there was nothing more they could do and that he had about a year to live. She said that there was nothing that he could do to improve his liver and that he would never be a BMT candidate in the future no matter what he did.

Needless to say, we were devestated! However, I was not going to accept this diagnosis, and proceeded to BMT clinics all over the country. I also demanded that Ray be bumped up to 24/7 iron chelation. Within a month, Ray's ferritin went from over 8000 to 3000. Ray also went on a strict Diabetes diet and lost 20 lbs, while getting his blood sugar under control.

Disney Spring 2008

Summer

In June, Ray went to see a liver doctor name Dr. Mitchell. Dr. Mitchell said that he was very impressed with Ray's progress in just one month and felt that he should still be considered a candidate for a BMT. He recommended that we go back to the BMT team at Shands and the Ray continue to take steps to improve his liver function. By July, Ray had his ALT down to 48 from 166. We then went to see Dr. Cogle at Shands, who felt that with Ray's progress, he should be a candidate for a BMT within a couple months.

Beachhouse Summer 2008

Alex's 2nd Birthday

Year Two

2008-10-18T10:24:00.000-04:00

Summer 2006 to Summer 2007

Summer

Alexander was born at the end of June and 3 days later, Ray was sent in for a Bone Marrow Biopsy. Dr. Saba, from Moffit, raised Ray's Cyclosporin to 300 mg. Ray was placed on oral Exjade for his iron overload, but his ferritin soared to over 4000. In August, Dr. Saba referred Ray to Dr. Perez and the BMT team at Moffit. Dr. Perez and her team said that it was too soon for Ray to be seeing them and said that he needed to try other medications to resolve his PRCA.

Fall

Over the Fall, Ray continued under his primary hematoligist's care. After a long abscence in hearing from Dr. Saba and Moffit, we discovered that Dr. Saba had had a heart attack and nobody was following Ray's case.

Winter and Spring

Finally, in February, Ray was re-assigned to Dr. Sokul at Moffit. Dr. Sokul switched Ray to Cytoxan, which he continued to take into Spring, with no response. By February, Ray's liver enzymes were elevated with an ALT of 104 and by March they rose to 140.

Summer

By the end of Summer, Dr. Sokul decides to refer Ray back to the BMT team at Moffit. At that point, his iron overload was beginning to cause beginning signs of liver damage, however, we were not informed of this damage, we only read about it a year later when we received all of the old reports.

Year One

2008-10-18T10:22:00.000-04:00

Summer 2005 to Summer 2006 Summer 2005

Ray continued to build his pool business, while receiving two blood transfusions every other week. The hematologist kept hoping that this was a temporary condition that would resolve itself.

Fall

Unfortunately, by September, it became apparent that this was not going to go away on its own. Ray was then put on Prednisone in an attempt to stop the Aplasia. Instead of curing his PRCA, the Prednisone just unmasked his diabetes. At this point, we were beginning to fear that Ray would some day need a bone marrow transplant. After reading information on Stem Cells and the side affects of BMT's (infertility), we decided to have another baby and store the stem cells.

Winter

In December, the hematologist decided to try IVIG (Intravenous Gammaglobulin). Ray's bone marrow failed to respond to this treatment after 3 rounds and he was now going into iron overload due to the constant blood transfusions. They began to treat him with Desferal (iron chelation) intravenously for 1 hour after each transfusion.

Spring

In March, the doctors started Ray on Cyclosporin. Although Ray started showing a little response to the Cyclosporin, He was still needing regular blood transfusions.

Summer

Finally, in June, Ray was sent to Moffit Cancer Center to see Dr. Saba.

Reality Check

2008-10-18T10:04:00.000-04:00

Late July 2005

A few weeks after returning from TN, Ray, Hunter, Logan and I were in Orlando at a convention for my work. One night Ray complained of an excruciating headache. This was strange for Ray because he rarely gets sick. He finally decided to go to the ER around midnight. Unfortunately the ER didn't take him seriously, and after waiting over 2 hours with other patients being taken around him, he went back to the hotel. He decided to pack up the kids and head home to see our family doctor.

The next morning, I received a call a call from Ray that our family doctor was admitting him into the hospital because his red blood count was only 4.2. They proceeded to run every test under the sun to determine where he was loosing blood. They finally determined that he was not bleeding anywhere. After doing a bone marrow biopsy, he was diagnosed with Pure Red Cell Aplasia. After 6 units of blood and a week's stay, he was sent home.

Prelude to Ray's BMT

2008-10-18T09:56:00.000-04:00

July 2005

While vacationing in TN, looking for land, Ray began experiencing headaches and intense fatigue. We just attributed this to him being overweight and physically exerting himself.