March Sadness

Oh boy….where to start. Steve's last blood m-spike test came back at 1.3….same as the month before and there was no m-spike in the urine. Acceptable news…we just wanted to see a reduction in his m-spike. I found out the results the day Steve was admitted into the hospital with pneumonia (I didn't tell him until he was feeling better) on March 10th.

This came on suddenly and the ER experience was very unsettling with additional medical "events". During his stay I got sick with something that has been going around……I was too sick to pick him up when he was discharged 3 days later (Thank You Bob!) He was given instructions to receive IV antibiotics for 6 days at the infusion center. Once again Thank You Richard!

Just prior to all of this my sister Rosemary recently began home hospice care. She was battling brain cancer which resulted from her breast cancer returning. I was determined to see her but with all that was happening I was becoming overwhelmed and extremely tired. I did see her 2 more times before she passed away on March 23rd.

I have to pause here and mention the outstanding care her four children provided her. Not just when she was in hospice but throughout her battle. Kristen, her second oldest, put everything in her life aside and became her primary caregiver. She took the time to understand every chemotherapy drug, radiation, gamma-knife, prescription drug and side effect her mother was to receive and experience. I believe this really helped Rosemary live years longer than others in her situation.

Two days after Rosemary died we learned Steve had infection on his arm caused by a spider bite, which he got cutting down a bush (He was suppose to be resting!) He was diagnosed with cellulitis. Apparently it can become deadly if not treated in time. More antibiotics…..

So….when we went to UCLA on March 26th, we were both worn out and discouraged. We believed the Doctor would change his treatment because of the last test. THANKFULLY he didn't. This was a really bright spot in a long month of heartache and hardship. Both the doctor and the clinical coordinator were unavailable, so Steve saw a different nurse and was given the next month's dosage of pomalidomide. I forgot to mention that while Steve was in the hospital he missed four days of pomalidomide, hopefully this will not reflect in the next lab report!

Rosemary Dunn

For those who prayed for my sister, I thank you, her children thank you and my family thanks you. She will be missed so very much.

Please remember to pray for Julie, Maricella, Natalie, Cheryl and Tana. 

Love,

Deanna

Reminded To Keep Trusting God

Being part of a clinical trial has shown me to expect the unexpected. Very unpredictable!
Below is the chart I made to follow Steve's progress. I realize its a bit hard to read (I have to zoom in a little) put it really helps me since I like to see history.

We were concerned when we learned in late January that the m-spike went up (1.5)…and we were very eager to see the results of the 1/30 Labs. We found out in late February the m-spike went back down to 1.3. For us this was great news. As long as Steve takes the steroids with the pomalidomide then it works! Wonderful!

So as you can imagine we went to our last visit (2/27) feeling pretty good! But along with the increase in January…there was monoclonal protein in the 24 hour urine test for the very first time ever. I kinda wondered about it, but nothing was said so I let it go. (The m-spike can be measured in the blood and in the urine. It all has to do with kappa and lambda light & heavy chains. The 24 hour urine test reveals an overage of monoclonal protein which spills over into the urine. If it continues it will mean the disease is progressing into a new direction. At least that is my understanding.)

So back to our visit on Friday, just as we entered the clinic to be seen by the nurse, Dr S. spots us and says "I need to see that guy today"! Uh oh.

He did not like seeing the m-spike in the urine and said he wanted to take Steve off the trial and go to something new. What! He wants to see a 50% reduction in Steve's total m-spike. After discussing it for a few minutes, I asked about the last urine test, what did it show? He didn't have the information and snapped at the interns to go find "R" our nurse. He left the room mumbling and didn't come back. R came in and told us the urine test came back at ZERO! So Steve started cycle 7 on Friday, she conveyed to us that if the next test didn't show a bigger decrease, then Dr S. wants Steve off the trial and onto something new.

I asked the nurse if we had any say in the matter and she said yes. But I realize that we need to talk to the doctor and find out why he is so concerned, what hasn't he told us? Now I'm just speculating and that's no good.

Early February the grandkids came down from Rail Road Flats (hometown) and stayed for 4 days. I have to say, spending time with these precious children really helped us both. It filled our tanks, so to speak and gave us a chance to forget about all this cancer stuff and focus on loving, hugging and squeezing these 2 cuties! Number 3 is due in July!

Say Cheese!

Abigale

Gabriel

And if you would, please pray for Maricella, Natalie, Julie, Cheryl, Rosemary,Tana and Skip.

Always Thankful, Always Praising the Lord!

Mrs. L

And Proud of it!