Micah started his first chemotherapy today and although we have been through this twice before there are many new experiences. Micah had his first of what will be many lumbar punctures. Just the name sounds awful. A little after noon, Micah was sedated for a procedure to remove some spinal fluid from his spine. There were two purposes for this procedure: first, was to test the fluid to see if the Leukemia is in the nervous system and second, was to inject chemotherapy directly into the spinal fluid. The procedure went well. The most difficult part of the process is finding a spinal space to inject. Micah’s back is so stiff that bending him to open up those spaces is very difficult. It took 2 physician’s assistances, three medical students, one nurse, one child-life specialist, and one very concerned mother for everything to workout.
Later that afternoon, we did find out there were Leukemia cells in the spinal fluid. After he completes the intravenous chemotherapy treatments he will have to have two lumbar punctures per week until the fluid is clear of cancer cells.
The Walters’ family is richly blessed by a community of compassionate friends at the University of Oklahoma Children’s Hospital. We crossed paths with so many people who love and care from Micah. One of the emergency room doctors was an intern during Micah’s Treatment #1. It is probably because of his previous knowledge of Micah that things went so well in the ER. One of the ER nurses was on that long first night in December 2006 when Micah was originally diagnosed. She told me in the ER, that Micah was one of those patients she would always remember. Dr. Knolls was walking through the ER, saw me and had to come back to see why Micah was there. He was a first year resident on rotation during Micah’s extended stay, the first few months of 2007, then was the senior resident when Micah was on the surgery floor, twice, in the summer of 2008 – diagnosis #2.
Micah couldn’t resist his imitation of Dr. Sexuar when he came in to tell us what was going on just before being transferred to the Pediatric Intensive Care Unit. Dr. Sexuar is the Oncologist on rotation in the hospital for the remainder of the month. We have seen him several times and we will see him often over the next several weeks. “Good morning boys and girls. Have any question/Have any answers.”
After being instructed to limit visitors in the PICU unit, I would look around to see any number of familiar faces. Of course these were all medical professionals and were not limited by the rules of the ICU. First friends to arrive were, of course, Micah’s Physical Therapists. They love him so and have taken care of him for years. Many of the Oncology nurses from the 10th flood made their way down to 8 to check on Micah and share in our uneasy wait. Our primary Oncologist, Dr. McNall came over from the clinic to check on Micah and share in our concern. Both Cara and Erin, who were new Physician’s Assistants at the time of diagnosis #2, came to visit in the ICU.
Micah is enjoying the familiarity of being among loving friends. He loves his nurses and the question of the day is always, “who’s going to be my nurse.”
For those of you who wonder why I am an OU fan, this is a picture of Coach Stoops with a friend of ours who is battling cancer for the third time. Bob Stoops knows that the real battles in life are not on the football field. (words from one of our friends whose daughter went to be with Jesus from the room next door to Micah a few years ago)
Micah was hardly settled back on the 10th floor before his favorite OU coach came to visit. Micah always enjoys his visits with Coach Stoops. We certainly appreciate his willingness to bring joy to Micah and many others who are suffering from Childhood Cancer. Coach Stoops has been faithful to visiting the Oncology Unit here at Children’s Hospital. He also takes time to create special times for these patients outside to the hospital atmosphere. Micah has attended the Bowl Game Celebrations in the Jimmy Everest Cancer Clinic. Micah has also enjoyed being Coach Stoop’s special guest at Special Spectators Game Day, Media Day, and the OU Football Banquet.
Micah had a pretty good night in the ICU. Of course the night was interrupted with the normal routine of vitals, changing out fluids, hanging antibiotic, blood work, and x-rays. I didn’t really sleep much. Trying to process all of this keeps my mind awake and therefore the rest of me is stuck on the ride.
Dr. Rooms preformed the bone marrow biopsy in Micah’s room under conscious sedation. Micah went to sleep well and Mark and I left the room while the procedure was performed. We were told he did very well and when we returned to his bedside all of his numbers were good.
Information about a bone marrow biopsy – (information from Wikipedia)
An aspirate needle is inserted through the skin using manual pressure and force until it abuts the bone. Then, with a twisting motion of clinician’s hand and wrist, the needle is advanced through the bony cortex (the hard outer layer of the bone) and into the marrow cavity. Once the needle is in the marrow cavity, a syringe is attached and used to aspirate (“suck out”) liquid bone marrow. A twisting motion is performed during the aspiration to avoid excess content of blood in the sample, which might be the case if an excessively large sample from one single point is taken.
Subsequently, the biopsy is performed. A different, larger needle is inserted and anchored in the bony cortex. The needle is then advanced with a twisting motion and rotated to obtain a solid piece of bone marrow. This piece is then removed along with the needle. The entire procedure, once preparation is complete, typically takes 10–15 minutes. (http://en.wikipedia.org/wiki/Bone_marrow_examination)
Since Micah had remained stable during the night, he was going to be transferred to our “home away from home” the Oncology Unit on the 10th floor of OU Children’s Hospital. The only difference is he spent all of his time during the first two cancer treatments on the regular unit and now we will be spending all of our time in the Stem Cell Unit.
It was like a reunion for Micah returning to the 10th. The nurses, doctor’s, physical therapist, and others all came by to see him. He is so loved by our OU Children’s Hospital community. The nurses used the white board in his room to fight over which one was his first and favorite nurse. It really lifted his spirits.
We received the preliminary report on the biopsy. It confirmed the diagnosis – Leukemia, specifically, Acute Myelocytic Leukemia. I am creating a Leukemia Information page here on the blog for a more comprehensive description of Micah’s new cancer adversary.
Today, Mark and I began one of the hardest days of our entire lives!
This morning when I checked Micah’s temperature it was 101°. So I began to get things together to go to the emergency room. I packed an overnight bag just in case. Mark was taking Joshua to Olsen’s Orthopedic to have his knee looked at, so I started out for OU Children’s with Micah.
Micah was really complaining about his back when we arrived and the triage nurses became anxious when they found that his heart rate was extremely high and his blood pressure very low. We didn’t have to wait long to be ushered to an examination room and to see a doctor. They repeated blood work, started Micah on fluids and intravenous antibiotics. Micah hasn’t stopped telling everyone that he had to be stuck three times in the ER. The first was to draw a peripheral blood culture, unfortunately the nurse dropped it and they had to stick him to draw the blood again. Then after the nurses were convinced they would not have to stick him again the doctor asked for a second line to double up on the fluids. So they had to start an IV. Micah told the nurses in the middle of things – that he shouldn’t need to be stuck because he had a port. Nick and Heath came to keep me company and to be there for Micah (thank-you both).
Mark and Joshua arrived while we were still in the ER. They were all dressed up for Doug’s funeral and Joshua was sporting a large knee brace. The funeral was scheduled for 2:00 p.m., dinner with the family at 12:00 p.m., and Mark was officiating. He was going to have to leave before we found out anything and before we were admitted. The stress was continuing to mount.
Micah was moved to the Pediatric Intensive Care Unit at Children’s Hospital. They wanted to observe him in ICU because of his heart rate and his previous heart issues. In the ICU unit we were encouraged to limit Micah’s visitors because his counts were low and because it was an ICU. However, for the next several hours it seemed like every medical professional from within the hospital was stopping by to see how Micah was doing. Micah is very popular here at OU Children’s.
Dr. McNall, our oncologist, stopped by to inform us that his counts were still very low and that one of the blood test they had preformed confirmed that there were irregular cells were present. He would have to have a bone marrow biopsy to know for certain.
This was at 1:20 p.m. Mark was about to officiate one of the most difficult funeral he had ever been asked to do. He was trying to help everyone at the funeral deal with the tragic loss. Doug was 38 years old. He left behind a five year old son, Drew. Mark said he was able to control his emotions until Drew came to the casket, folded his arm on the edge, and patted his dad.
I waited to give this news to Mark until after the funeral. Mark came back to the hospital and later the rest of the family all came up.
Joshua had a junior varsity football game on Monday, September 20. Mark went up to the high school to watch Joshua play. Joshua plays tight end and defensive end. Mark calls me during the games to give the play-by-plays and highlights. Joshua was having a great game until he called to tell me Joshua was hurt.
Andrew, our team trainer, thought he probably sprained tore his MCL. He is also probably out for the rest of the season.
This is very disappointing and we feel bad for Joshua. He has tried to do the things he was expected to for the team. He is a wonderful team player and he is good at football (of course I have been accused by one of the coaches that I look at Joshua’s athletics through “momma glasses”). He is faithful to practices and team meetings. We have sold so many of those football fundraiser cards. Mark and I try to support the team through the Touchdown Club, activity attendance and support. The church provided the pre-game meal before the first home game against PC West. I also designed a new website for the CHS football program.
By the way, I will always look at Joshua through “momma glasses.” He is a wonderful young man with outstanding character. He has endured a very complicated family atmosphere his whole life and it is becoming even more difficult again. We are very proud of him!
Micah had been running a low grade fever and been very tired all weekend. So we decided he should see the doctor to see if he needed an antibiotic for an infection or something. The doctor ordered blood work, urine cultures, and stool cultures. She didn’t want to prescribe an antibiotic because there was no obvious infection (sinus, respiratory, etc.). We were sent home to wait for the results.
Micah was to throw out the first pitch at the CHS Softball Game. It was Win-Win Cancer Awareness Week for the Oklahoma Secondary School Athletics Association. He was really looking forward to the event but we thought he should stay home considering how he felt and still not knowing why. (This becomes very ironic later)
The doctor’s office calls early evening with results from Micah’s blood work. His blood counts – white, red, and platelets were low. Their suggestion was to follow with the Oncology Clinic. WHAT?
We contacted our oncologist. She encouraged us not to panic that this could still be a virus but that if it wasn’t it could be very serious. She also instructed us to go to the Emergency Room if his fever became 101°.
On Thursday, September 17th, Micah played with the Choctaw High School Band during the Yellowjackets football game at Putnam City. Because it was an away game, the band was to perform their halftime show after the game. As we neared the end of the game Micah was looking really tired so we opted to go on home instead of staying.
Then on Friday, Micah chose to stay with Mark instead of going to school. This is extremely unusual. Micah loves school. He thrives in the atmosphere of school with all of his faculty and student friends.
During these days, our family has experienced multiple stressful circumstances. The first involved Tanya’s husband Doug. A week earlier, Doug found out he had a large brain tumor. Two days later he had surgery to remove the tumor in an attempt to prolong his life. Unfortunately, Doug slipped into a coma on Saturday and by Friday, September 18th, he lost his very short battle with cancer.
Micah and I stayed home over the weekend while Mark helped with the grief process and funeral preparations. However, to add to our emotional load, my dad called late Sunday afternoon to tell me my mom had had a stroke. Mark stayed with Micah Sunday evening while I drove to Enid to check on Mom.
My mom was at Bass Integris Hospital in Enid. She was suffering from slow mental processing and difficulty speaking. She was also experiencing weakness on her left side. I stayed the night at the hospital with her but drove back home early Monday morning. But before I left I told her, next time you need some mother-daughter time let do something fun!
By the time I had returned home Mark had scheduled a doctor’s appointment for Micah in the Adolescent Clinic at OU Children’s Medical Center. So before we headed to the hospital , I went up to the school to organize lesson plans for a substitute for Monday’s doctor’s appointment and the funeral on Tuesday.
By the way, Mark was supposed to be gone to New York City on a church mission trip with several other adults from our church.