Anemia, Dehydration, and Board Games

Post by all children:
Dad is in week 3 of his Revlimid treatment. The way this drug works is 3 active weeks and 1 inactive week where he takes a break. This cycle will continue 3 more times before it is completed. Then he will begin preparation for the Stem Cell Transplant.

As of this week, Dad has experienced the typical side effects of the oral chemo. He has been nauseated, tired, weak, and feeling a loss of appetite. His appointment with onclogist, Dr. E., on Thursday resulted in the latest diagnosis of anemia. This is not uncommon with this form of cancer. In order to treat that, Dad takes regular iron supplements.

The most common question we get is asking how he is feeling. Each day is different. He will have a really good day and a really bad day back-to-back. On good days, he moves around better and enjoys getting out to go to work. On bad days, he stays in his recliner or in bed more. This past week he had a really good day on Wednesday. He described it as the best he has had since the diagnosis. Thursday was not as great.

On Friday he went to work in West. He was out of the house for about 5 hours. That night our whole family was together for dinner and fun. Dad stayed fairly active through the gathering. Tim grilled steaks, potatoes, veggies, and lobster. Val, Kim, and Kaylee played outside. Paula prepared the kitchen, and Dad visited with his friend, John, for awhile inside. After dinner we relaxed and visited for awhile.

Kaylee while playing board games

Saturday was, again, not as good of a day for him. He said he didn't really feel up to moving around as much, even within the house. By the evening, he was feeling extremely fatigued and dizzy. That night Paula contacted the doc and they said to bring him in to the ER. He was admitted for the night with low blood pressure and dehydration. The goal is to keep him drinking lots of water and Gatorade while keeping active with all oral treatments. His kidney function needs to maintain good status!!!

On Sunday, Tim and Val met with Nancy Goodnight for a late breakfast. Nancy is actively involved with the national donor registry, Be The Match. Her focus is to grow the registry, inform the public, and coordinate events and donor drives. She is also a courier for the area and transports marrow, stem cells, etc when a match is found. Nancy was very informative and discussed many options for drives and events. We will provide information on these as they develop. Currently, there will be one on May 11 at First Woodway Baptist Church.  This drive will offer the opportunity for folks to sign up for the registry.  It has been scheduled for some time and Dad's name will be added as a possible local candidate for a transplant.

At this time we do not know whether he will need a donor for the transplant or if he will be able to have an autologous transplant where he uses some of his own healthy blood cells.  We discussed with Nancy what we, as a family, would like to do - which is help promote awareness of folks like Dad who need transplants to greatly improve their quality of life and in some cases prolong life significantly.  Even if he does not need a donor, someone in a similar situation somewhere else will.  If he does need a donor, finding a match can be a very difficult process.  The more people on the registry, the more likely anyone who needs a transplant is to find a match.

We continue to thank everyone for the thoughts, prayers and support.  It really means a lot to us and to Dad and he needs all of the encouragement and positive support he can get as he gets further into the treatment process.  We all feel blessed and fortunate to have such a great group of friends and family to rely on for support.  Again, we will provide more updates regularly and will post information about drives or events that develop to promote awareness and to grow the registry! 

Radiation & Chemo Journey Begins

Post by Tim:  Dad wanted to give folks who follow this blog an update and let you know that he has now gone through half of his radiation treatments (5 out of 10) and has started taking oral chemotherapy (Revlimid) along with steroids as of today.  The radiation and pain meds have the pain at a manageable level at the moment - and he has been pleased with the radiation experience.  He's experiencing the common (from what we hear) side effects - fatigue, loss of appetite - but nothing intolerable.

Also at the moment, Kaylee is sick which presents a different type of dilemma.  Aside from not wanting her to feel bad, he cannot be around her and exposed to any potentially contagious illnesses.   With dad's particular disease and this route for treatment (especially since he has started the Revlimid), his immune system is weakening and not what it should be.  This will be something we as a family learn to understand and adapt to. 

This marks the beginning of what is going to be a long and successful journey to remission and ultimately to a stem cell transplant.  So far, so good.  We will provide updates throughout this journey.  During the Revlimid and steroid cycles, he will have frequent doctor visits to monitor how his body is handling the drugs, and for periodic blood and bone marrow tests (mainly towards the end of the scheduled cycles) to track progress.  As of now, Revlimid cycles will continue for 3 months.   

I want to thank everyone for your continued support and prayers for dad and our family.  Know that dad appreciates it that much more.  We are certainly not the only family who is struggling / has struggled with cancer in some form.  We also pray for those of you who are - and want you to know that you are not alone. 

Hopefully the next update is news of continued progress - keep praying!!

How it all began

Post by Valerie: Dad had been experiencing extreme back pain since the beginning of January 2011. He went into the ER at Providence on Monday, Jan 28. There, they performed a series of tests that provided limited information. He came home that night. Two days later on Thursday, Feb 3 dad was transported by ambulance back to the ER at Providence. At that time, they performed an MRI which indicated a broken T-7 thoracic vertabrae, as well discovered a spinal mass. Recommendations included a vertebroplasty - surgically cementing the bones together and a biopsy of the mass.

Two hours later he was allowed to go home. Five hours following home arrival, he was transported back to the ER via ambulance due to a spasm induced paralysis. Friday, Feb 4, while hospitalized the biopsy results came back. The diagnosis was Multiple Myeloma. For those unaware of what this is, it is a malignancy of the bone marrow. It destroys bony tissue, causing pain and fractures. This was the first time we were faced with the term cancer.

Dad stayed in the hospital until that Sunday. The time was spent controlling his pain with strong IV meds. As a family, we tried to stay away from all of the internet details to spare ourselves of grim information before meeting with an oncologist. Of course we looked for the basics but preferred the wait for professional information and details.

That following week dad chose a specialist in Dallas who is reknowned in the state of TX for handling cases involving bone marrow. He specializes in bone marrow transplants. At that point, Dr. Pineiro discussed the diagnosis and potential treatments. He was focusing on radiation, chemotherapy, and stem cell transplant. Before treatment could begin, further testing was required to solidify this medical path.

To this date, testing has included: MRI, bone marrow biopsy, various blood testing, protein level testing, skeletal survey, and PET scan. Dad has an oncologist in Waco collaborating with Dr. Pineiro to assist with reduced travel time. It's convenient and safer being as there is significant pain involved.

Finally, on Wed March 2, dad was able to begin radiation treatment here in Waco. The proposed plan involves the following:
1. Radiation for 8-10 days
*began on March 2
2. Take Revlimid (an immunomodulatory agent - oral chemotherapy) for 3-4 months. It works by helping the bone marrow to produce normal blood cells and by killing abnormal cells in the bone marrow.
*will begin as soon as the meds arrive
3. Strong dose of chemotherapy
4. Stem cell transplant

We are hopeful that these treatments will control everything and that Dad can get well! We will provide updates as much as possible.