Day 3: Leukemia – the Yucky Stuff

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.

Leukemia – Day 3: Bittersweet Reunions

Dr. Knolls with Micah during surgery stay April 2007

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 with Candice and Peggy

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 10^th 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.”

There should be a better way to see Coach Stoops

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 10^th 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.

Wednesday, Day 2: Leukemia

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
)

Micah is where he is really loved!

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 10^th 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 10^th.  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.

Day 1: Leukemia

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.

Adding to the Scenario – Joshua’s Injury

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!

Adolescent Clinic Appointment

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°.

The Days Leading Up to Today:

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.

Wow! How time has gone by!

I was checking on a photo for someone today here on our family blog.  When I saw the date I knew I just had to do an update.  It has been exactly one year since I posted on our WordPress.  Believe me, its not because life has slowed down and we have nothing to write about.  Just the opposite.  While Micah’s weekly cancer treatments have ended and we are trying to return to whatever normal life we can muster.  In fact, many of the complexities that carried over from Micah’s cancer treatments, along with the return to life as we now know it – We may be even ?B U S I E R? 

So what are the Walters’ up too these days?

Micah -

Let’s begin with Micah.  Micah has returned to school and is loving it.  He is all about Choctaw High School.  He finished his 52 weeks of Chemotherapy last October and we have had two repeat scans since.  The most recent was in March and the word remains “stable.”  In November 2009, Micah was granted his wish through the “Make A Wish” foundation.  We spent a week in Orlando and enjoyed the time together.  If you are on facebook you have seen many of the photos and I hope to create an online scrapbook from the trip here on WordPress.

Currently, Micah still struggles with “reflex sympathetic dystrophy” in his right foot.  This has caused his leg to draw up and he is now confined to a wheelchair.  Today we had an appointment with Dr. Davies at Children’s Hospital.  We discussed surgery but decided against it.  He fears that surgery may actually further complicate the RSD.  So we spent some of our day in Orthotics.  Micah is being fitted for a custom splint that will work to straighten his leg.

Joshua –

Joshua has had an amazing year.  He is now in high school and driving.  He successfully passed his driving test on the first try and we have given him Mark’s red Mustang.  He is doing very well in school and with his extracurricular activities.  He had a good football and basketball season.  He is in off season football currently.  He is very busy with church activities and his friends.  He is also working several hours a week for a friend of ours at Langston’s.

Mark –

We will celebrate 13 years at First Baptist Church – Nicoma Park in the fall.  It is hard to believe we have been here all those years.  Mark enjoys his ministry here and we are very happy.  Our church family has been a blessing to us during our struggles with Micah.  The church continu- es to grow in different ways.  Currently it is growing physically – the 5000 square foot choir suite should be completed in a few months. 

Janna -

With the completing of the Freshman Center at Choctaw High School – I moved to the high school to teach math again.  It has been a great year with many challenges.  I am also still developing the Choctaw-Nicoma Park District and School Websites.  It is becoming increasingly difficult to keep up with – but I really like it.

The whole family is looking forward to summer.  This will be the first one that has been cancer free in many years.

Well, I hope to fill in many of the events during the last year but at least this is a start.  So many of you have reminded me over the year that I have not been very good about keeping up with our website.  Sorry.  I will try to do better.

This is a long one!

Joshua -

First, I would like to announce that Joshua took the second EOI of his required testing during high school and did very well.  He has now passed both Algebra I and Geometry EOI.  That’s my boy!! That is coming from a proud mother and math teacher.

Micah – (grab a cup of coffee, this is a long one)

Micah ready for a long day

Wednesday was one of those days that is particularly difficult physically for Micah and emotionally for Mark and I.  Micah was scheduled for his CT scan, blood work, and a doctor’s appointment.  While Micah’s cancer has always responded to chemotherapy treatments and we have never had active tumor growth while on chemo, we are always somewhat anxious when it is time for scans.  Micah and I arrived at Radiology at 8:30 a.m. in the pouring rain (thank-you to the hospital valet parking – they are so helpful).  After all of the paperwork they brought us Micah’s contrast, 4oz. through his feeding tube every 20 minutes.  Then it was up the elevator, across the cat walk and up another elevator to “Kids Care 7” – The Jimmy Everest Cancer Clinic.  We prefer an oncology nurse access Micah’s port-a-cath so we go over to the clinic when any of his tests require the use of an IV.  We returned to Radiology to finish our contrast and complete the scan.  We waited for the technician to finish a CD copy of the scans and left.

Next, we went to physical therapy.  Micah is usually welcome to drop by PT

Just too tired for PT today!

when we are in the hospital for other scheduled appointments and if they are free someone will work with him.  He has made no progress with his “reflex sympathetic dystrophy” since the issues with his heart.  Micah’s leg is drawn up and he can no longer extend his knee to walk and his foot continues to cause him a lot of pain.  It is a difficult balance between rest, recovery, and rehab.  Anyway, Candice was free and could work with Micah – trying to straighten his leg.

When we finished at PT we went up to the 10^th floor to visit.  We have become very close to Emma (6 months) and her family.  She has been inpatient for about three weeks.  So I wanted to check on them.  Next, we stopped at the hospital cafeteria for a bite to eat.  We sat at our regular table so we could see people pass by.  We had the opportunity to visit with several of our friends. 

Micah and Dr. Ike

Then, we had a wonderful surprise as we were walking back to the clinic.  We ran into Dr. Ike.  We first met Dr. Ike at about 3:00 a.m. on December 2, 2006 in the Emergency Room at OU Children’s Hospital.  He was the Urology Resident on call that night.  He was the first one to take the time find out what was wrong (remember this was our second ER visit and we had been to two different doctors’ offices during the previous two weeks).  Dr. Ike was the first to tell us the Micah had a huge mass in his pelvis.  By 6:00 a.m. Micah had been scanned , the rest of the urology team had arrived and we were discussing the cancer – Rhabdomyosarcoma.  The events of the night are forever etched in my memory.  Dr. Ike and Dr. Campbell, the urology attending physician, may have saved Micah’s life that night by catching his tumor growth when they did.  Dr. Ike has now finished his residency and will be leaving to complete a fellowship in Chicago.  We wish him the best!!

After our visit it was on to the clinic.  There was so much going on in the clinic it was hard to take it all in.  Several of our friends were in clinic and for several different reasons. 

• First, our friend Branagh and her mom Jessica were in clinic today.  Jessica and I have become friends over the previous year or more.  Branagh has successfully completed the long and painful year of treatment for Acute Myelogenous Leukemia.  She came in today for a checkup and blood work.  It is also her 11^th birthday – Happy Birthday Branagh.  We are praising God together for healing!!
• Second, we were able to catch up with one of our newest friends, Andi Marie and her mom Julie.  Andi Marie (4) was diagnosed with Wilm’s Tumor on April 6^th.  They were admitted to the 10^th floor OU Children’s Hospital and became a part of our cancer family.  She has had surgery to remove a kidney and today she received her third round of chemotherapy.  She will be on a 22 week protocol.  Pray for this sweet family as they travel this difficult road.
• Third, Brandon (2), his whole family, and many friends were at the clinic today to celebrate the “ringing of the
  

  Brandon "Rings the Bell"

  bell.”  This is a wonderful event that signifies the end of treatment.  The Lansberry’s also became good friends during our lengthy hospital stays this past fall.  Brandon was diagnosed with hepatoblastoma in September ’08 and I have followed their entire journey.  Brandon and his parents have traveled an extremely difficult road.   It was great to celebrate this day with them.  Praise the Lord!

Sometimes it is hard to believe how long we have been on our own journey with Micah, until we measure it in the lives of those we have touched and who have touched us.  We have cried with many families during those first horrific days of diagnosis.  We have walked the ups and downs of treatment.  We have celebrated the end of treatment with many and grieved the end of life with some of our precious friends.  We love you all.  And yet, here Micah is – fighting, blessing everyone who comes to know him, and surviving!!!!  What an amazing boy; what an amazing God to see us through.

Unfortunately, while we were enjoying our friends, Micah was fading fast.  He has had little energy for some time and today was no different.  He has been running a low grade fever, his counts have been low, and he is having lower gastrointestinal difficulties (still or again?)  We received his counts and it was confirmed that his counts are low.  His AGC was 200 so his is neutropenic.  His white count was 0.5 (normal is 4.0-11.0), hemoglobin was 8.2 (normal is 13.0-18.0) and platelets were26 (normal 140-440).  Our nurse informed us that the doctor wanted to admit Micah for a unit of blood but there was no room on the 10^th floor.  It’s not that we don’t like the rest of the hospital – we have many nurses we like on the ninth floor who have taken care of Micah.  But Micah likes being on 10 and he isn’t happy on other floors.  We like being able to return to the comfort of our 10^th floor home away from home.  The nurses know Micah very well and are aware of all of his special needs.  So this became a complex discussion – between the physician’s assistance, the nurse, our doctor (who was in the ER while this was going on), Mark (who is on the phone) and me.  Finally, it was decided that we would go over to the 10^th floor for “type and cross” then return tomorrow for the blood in the transfusion room on the 10^th floor.

To add to this mayhem, Micah is experiencing agonizing pain because of the lower GI issue.  Micah has huge blisters and open sores in his rectal area and every time he passes stool he screams in pain.  Micah has not been able to gain complete control since his colostomy reversal surgery, so he is in “pull ups” (4T-5T size – my 18 year old – anyway), therefore clean up is painful also.  He passed two stools while we are in clinic and all of the discussion and Brandon’s bell ringing are all going on. 

We did go back over to the 10th floor for Micah’s “type and cross”.  Sarah heplocked his port and we were done.  Finally, our kind valets brought the van around and we are headed home again about 5:00 p.m.

Tough Week for Micah

As many of you know it has been an extremely difficult week for Micah.  On Friday while I was monitoring our state mandated CRT tests for the eighth grade, Mark text me to let me know Micah was being admitted to the hospital straight from the clinic.  His counts were low again and he needed blood.  This was to have been a pre-admit appointment for his next round of chemo but the admit came a little earlier than expected.  I stayed at school to the end of the day so I could pick up Joshua from the high school.  I went home and packed then headed for the hospital.

We were still waiting for the type and cross when I arrived.  The plan was to give Micah a unit of blood and at midnight begin his chemo – this was the two day treatment of vincristine, actinomycin, and doxorubicin.  All day Saturday, Micah was out-of-sorts.  He wanted way more pain medicine and stomach medicine than usual, he was sweating, and breathing heavy.  Then he began to periodically nod off to sleep – of course our initial thought was this was a reaction to the Dilaudid and the Phenergan.  Our day nurse checked his temperature, listened to his chest, and took his blood pressure several times but found nothing out of the ordinary.  At shift change our evening nurse repeated the normal vital routine but this time checked his pulse-ox also.  We stood watching for the machine to calibrate and the number to begin to rise.  However, it never did.  Micah’s oxygen saturation was 54 and the number was not going up.  Our wonderful nurse ran for the oxygen mask.  After, a lot of excitement from the medical staff and a chest x-ray it was discovered that Micah had developed Pulmonary Edema – his lung tissue was full of fluid.

Micah spent the following days on oxygen and he was given Lasik to help his body remove the fluid.  Yesterday, Cardiology completed an echocardiogram on Micah.  The Cardiologist had informed us that Micah’s heart has been permanently damaged probably by the Doxorubicin.  He describes it as a stiff heart.  We also found a couple of other heart issues related to his genetics syndrome – Costello.  He will have to be closely monitored during the remainder of his treatments because the extra fluids will continue to be a problem.  We have also added one more piece of medical equipment to our home-hospital room.  He is now on a Pulse Oximeter so we can monitor his oxygen level and his heart rate.

Rumble comes to visit

 

 

Micah, Rumble, and Megan

 On Friday, when Micah arrived at the hospital, he was greeted with a wonderful surprise.  The Oklahoma City Thunder’s mascot Rumble was visiting on the tenth floor along with another of Micah’s friends – Megan Johnson, one of the Thunder Girls.  Micah enjoyed meeting Rumble and posing for a picture.  Megan has visited Micah on several occasions.  Some of you may remember Megan from the fundraiser Choctaw High School sponsored in 2007, “Tip the Mic for Micah.”  Megan won first place in the talent show and has been a dedicated fan of Micah’s since that time.  Megan is a 2007 graduate of Choctaw High School and can be seen on

Faces of Oklahoma – News OK/43.

Day 4 of Micah’s 5 day Chemo

Micah’s Journey

Micah was admitted on Saturday for his five day chemotherapy treatment.  This was several days later than anticipated because of his blood counts.  Last week was pretty rough – he had two different clinic visits to find that his counts were very low (AGC<200).   We expected to admit on Wednesday but his counts did not recover enough until Friday – thus the Saturday admit. 

Micah enjoys being with his his hospital family and since we spend so much time with them it is good that he does.  The following video is an example of the fun he has with the nurses on the tenth floor.  Of course they all know what a big OU fan he is so the night nurses decided to tease him by decorating his room before he was admitted.  They all love him.  We quickly changed out the OSU to OU after we were settled in our room. 

We have also had two more cancer diagnoses on the floor this week.  One is a six month old little girl with leukemia.  Emma is a beautiful baby with a wonderful family.  Unfortunately, she is now quite famous – she is the youngest leukemia patient treated at OU Children’s Hospital.  If you would like to keep up with this sweetheart and share in this journey of faith with this family, visit her caringbridge at –
http://www.emmagrace2009.blogspot.com/

Joshua’s World -

Joshua continues to amaze me as he navigates the complex years of adolescents.  He is currently participating in off season football – he chose this over the other spring sports at the high school.  Since he spent so many years in spring soccer when he was very young he entered baseball later than most of his friends.  It was not his strongest sport so when he was in the seventh grade he tried track.  He really liked the coach (he had been his basketball coach also).  Then in the eight grade he decided to try baseball again.  He really had a good season and the other players and parents commented on how much he had improved.  However, when summer baseball came around he was cut from the team and that was enough to convince him it was time to concentrate on the sports he was already excelling in – Football and Basketball.

Joshua is also doing well in his academics.  However, as with many students his age he has learned how to do enough in class to keep his grades up.  I have high expectations for him in his educational endeavors but he is a teenager and it is difficult for him to see how important the current investment of time and effort is for the long term.

Mark’s Ministries –

Mark has been extremely busy with church business.  First Baptist Church recently voted to build a new 5000 sq. ft. music suite.  The oldest structure of the current church building will be removed to make room for the new space.  This project will be the fourth capital campaign Mark has led the church through.  During his ministry at FBC-NP the church has raised over 1.5 million dollars above our regular tithes and offerings.  Administrative leadership is just one more area the Lord has gifted Mark in as he leads the church. 

Janna’s Complexities -

My position with the Choctaw-Nicoma Park School District continues to be a wonderful match for the complexities of  my life.  The Lord truly blessed me with exactly what I needed this year.  I continue to teach three hours of reading in the mornings.  My classroom is a technology geek’s wonderland.  Each one of my students have their own computer station.  We also have the latest and greatest  teaching technology with a ceiling mount LCD projector and a Smart Board.  It has been a wonderful learning experience being involved with the administration at NPJH.  Serving an administrative internship has provided me with numerous practical experiences to prepare me for an administration position in the future.  A third “hat” I wear in the district is as web specialist.  While website design and administration is very time consuming, I have the flexibility to work on it outside of the school day.

Clinic Visit

Joshua – Disciple Now Weekend

It is Disciple Now Weekend so Joshua will have a very busy weekend.  The youth will have activities from Friday evening to Sunday evening.  They will be staying the night in host homes.  Joshua also has an event with Hayley on Saturday.  He has been planning to attend Hayley’s cheerleading banquet for some time so he will miss some of the Saturday activities of Disciple Now.

Micah’s Counts

We returned to the clinic again today to check Micah’s counts.  His counts are not great but he will be able to recieve his chemo.  He will be admitted in the morning for his five day inpatient chemotherapy treatment.  To celebrate his improved counts, he wanted to go to Starbucks.  So we met Richard and Kim for coffee.  Micah enjoyed himself but tired quickly.

While we were at the clinic today we went to visit the 10th floor at the hospital.  A group of NFL players were visiting at the hospital so Micah was able to meet several of them.  I grabbed a quick video with Cato June from the Houston Texans and Larry Foote from the Pittsburgh Steelers.

Joshua helps Micah

It has become very difficult for Micah to walk because of his “reflex sympathetic dystrophy.”  Joshua is great to help us out in this area – carrying Micah to and from his bed and the car.  Micah weighs between 76 and 80 lbs.  Mark and I can still lift him but it is very nice for Joshua to help and it is a touching scene to witness. 

WBC < 0.4 and AGC < 200

Micah’s Clinic Visits

When Mark took Micah to the clinic on Wednesday his counts had not begun to drop but by Friday his white blood cells were almost zero.  Of course, it is the white blood cells that fight infection. 

• white blood cells kill bacteria that invade your body and can cause infection.  Patients with lower-than-normal white blood cell counts have a weaker immune system, and have an increased risk for infection.

Low white blood count, Neutropenia, is a common side effect of Chemotherapy and Micah has struggled with this side effect during this phase in his treatment.  He is being given seven different chemotherapy drugs which include Doxirubicin, Actinomycin, Vincristine during the two day inpatient hospital stays which he finished last Saturday.  He also receives Ifosfamid and Etoposide which is the chemotherapy he receives during his 5 day inpatient stays.  All five of these chemotherapies cause bone marrow suppression.  White blood cells are reproduced in the bone marrow.  Micah receives Neupogen shots for 7 to 10 days following these chemo drugs to stimulate the recovery of white blood cells in the bone marrow.  Neupogen is not without its own side effects including bone pain and the fact that it is a shot – everyday!

Micah at Physical Therapy

 Tuesday, Micah’s physical therapist called to tell us that their representative from DynaSplint could fit Micah that afternoon.  So I left school a little early to take him to the hospital for his fitting.  We hope this splint will help him regain the use of his left leg.  We hope to increase the time he will wear it each day but he doesn’t like it at all.  We also hope the foot will continue to get better. 

This was also the last week for our new KU friend to help with Micah’s physical therapy.  Andrea returned to school and another PT rotation.  We will all miss her and wish her the best as she finishes her preparation as a Physical Therapist.  She will be a wonderful addition to her chosen field.

Joshua’s Week

Joshua continues to keep up with his busy life.  He is doing really well with his driving.  Both Mark and I are getting use to being chauffeured about; even Nana is letting him drive her car.  He was unable to spend any time with Hayley over Spring Break so he spent Monday at her house and then she spent Tuesday evening at our house.  Mark and I are pleased with their relationship.  They both seem to be balancing their daily responsibilities and their emotional attachment doesn’t seem to be consuming them.  Hayley is a very sweet girl.  She has grown up in a chrisitan home with similar family values.  They have been together for six months now.

We are also extremely pleased with Joshua’s school work.  He continues to make very good grades through all the complexities of our lives.  I know it must be difficult to stay focused – it is for me.  He had a project in his Physical Science class – his group was to design and build a compound simple machine that would pick up a tennis ball from one table and place it on another.  He and I spent a great deal of time on Tuesday trying to gather the materials from Lowes.  They worked on it during class all week.  Joshua says that it is working.

Mark’s Week

Mark continues to juggle his many responsibilities at the church and sharing in the care of Micah.  Mark had several in the hospital and ministered to a family during their time of grief.  He manages to take care of the daily management of the church business.  He studies for and shares God’s Word each Sunday morning and evening.  He attend committee meetings as we prepare build additional space at the church.  He leads prayer meeting and bible study on Wednesday’s. 

Then he shares in caring for Micah’s special needs.  Mark and I take turns, along with my parents and his mom, caring for Micah’s daily needs.  However, since Micah has become more disabled from the problems with his foot and has to be lifted much of the time our parents are unable to help with bathing or any similar needs.  We all keep up with his medications, his feedings, and his changings.  Micah’s many medical appointments also keep us busy running to OU Children’s Hospital.  Just this week, Micah had several physical therapy appointments, two visits to the cancer clinic, and an appointment with Dr. Coleman – his Neurologist at Integris.  We made trips to three different pharmacies to secure a prescription we later found had to be compounded at Lassiter’s which was also not covered by insurance. 

My Week

I didn’t complete all of the projects I would have like to over spring break and there were several loose ends to finish up.  My parents arrived Wednesday to help with Micah’s care.  They always work so hard; I wanted to have the house clean and the laundry done up when they got here so they wouldn’t feel like they had to do it.  It is very hard to have all of the laundry done at anytime so they still did several loads of clothes.  My mom also cooked a wonderful dinner of spagetti and meatballs for us on Thursday.  Joshua must have really liked them, he ate plenty and the leftovers are gone too.  Thanks Mom and Dad!!!  They also managed to get back to Enid on Friday before the weather set in there.

The Choctaw/Nicoma Park Schools will be going through a major transition this next school year.  Nearly every school site in the district will have new grade configurations and we will begin offering all-day kindergarten.  These are exciting days for our schools and some wonderful changes are taking place.  I will be joining several teachers as we transition ninth grade from junior high to high school.  While many of you know my ultimate vocational goal in education is to serve our district as an administrator – until a suitable position becomes available, I am content to continue in the teach in the classroom.  I will be returning to teaching Algebra and Geometry to ninth graders at Choctaw High School.  I also hope to continue to serve the district in the role of web technician.

Our school district is commit ed to making the appropriate adjustments in order to create the best educational environment for its students.  Additional professional development for our teachers and administrators is being provided.  On Thursday and Friday, I had the opportunity to attend a workshop called Career Choices.  The teachers from the districts that attended will be working together to develop a transition curriculum for high school freshmen.  In our highly competitive culture it is important for students to begin thinking seriously about their future goals and develop a plan for achieving that goal.  A course like this is long overdue and I am looking forward to witnessing its impact for students in the future.

Have a blessed week, Janna

Inpatient Chemo – Week 28

Micah completed his two day chemo on Friday and Saturday.  He did really well with the chemo and we were able to take care of some of the issues we discussed at our pre-admitt appointment.  We found out that his stooling problem was caused from an infection called C-diff.

• “Clostridium difficile, often called C. difficile or “C. diff,” is a bacterium that can cause symptoms ranging from diarrhea to life-threatening inflammation of the colon. Illness from C. difficile most commonly affects older adults in hospitals or in long term care facilities and typically occurs after use of antibiotic medications.”(Mayo Clinic information)

Micah will be on a specific antibiotic to treat this infection.  He is also under “contact precautions”.  That means that anyone who comes into his room has to wear those “pretty” yellow gowns and he can’t leave the room.  It means lots (even more than usual) handwashing and sanitizing at home.

We also consulted with pain management concerning the “reflex sympathetic dystrophy” in Micah’s foot and now the spacicity in his leg.  Micah is already taking two medications for nerve pain and we added another on Friday.  Micah will soon be fitted for a “dyna splint.”  It’s purpose is to increase his range of motion again.  Micah is not ambulating at this time.  Between the foot and the leg we are very concerned and will be continuing to seek solutions to this medical complexity.

This completed week 28 of Micah’s 54 week protocol for Rhabdomyosarcoma relapse.  Micah continues to take each day as it comes.  He is amazing!  As long as he can be with his family, talk to his friends on the phone, and watch OU play basketball or watch “Full House” he remains happy.  It never bothers him to go into the hospital – it is just another social event for him – it is where his friends are.   Wouldn’t it be great if we could all be happy where ever we are!

As we have stated before, if we have to be in the hospital, it is great being at OU Children’s Hospital with our wonderful medical professionals and our growing (unfortunately) number of friends we have because of the bond we have from our cancer community. 

Update:

Abby – is doing better.  Her blood counts are finally recovering and her infection in improving.  They have been in the hospital for over 3 weeks but may be headed home on Monday.  We Praise the Lord! with Michelle and Brent.  If you would like to enjoy following Abby’s progress click –
http://www.riggsfamilyblog.com

Rebecca – we have become aquainted with Rebecca’s parents and enjoy visiting with them during our time in the hospital.  Our last two inpatient stays have overlapped with theirs.  Rebecca will be having surgery to remove Ewing’s Sarcoma soon.  We are praying everything goes as planned.  If you would like to follow Rebecca go to
http://www.caringbridge.org/visit/rebeccastafford

Mason – unfortunately, I met another new family to the OU Children’s Cancer Community.  Mason is 9 months old and has been diagnosed with Leukemia.  This family has a very difficult journey ahead of them.  If you would like to follow this families journey and see how you might help go to
http://www.caringbridge.org/visit/masonwhitcomb

Brandon – is the 2 year old who receintly received a liver transplant at Cincinnati’s Children’s Hospital.  After 4 weeks, Brandon was released from the hospital a few days ago.  George, Alicia, Brandon, and Tyler will return to Oklahoma City in about a month.  To read more about the Lansberry’s journey go to
http://www.caringbridge.com/visit/brandonlansberry

Kaylee – is the 3 year old little girl who was diagnosed with Wilm’s Tumor on the Friday of our last inpatient chemo treatment.  She came through her surgery to remove the cancerous kidney and has begun her treatment protocol.  She has begun both chemo and radiation.  She is at home.  To read Kaylee’s story go to
http://www.caringbridge.com/visit/kayleedavis

There are many other families we have the privilege of walking alongside during this journey.  Additional links to their stories can be found in the right column of this website.

Mark and Joshua are home!

Joshua and nearly 40 other youth and adults from the First Baptist Church of Nicoma Park, OK chose to spend their Spring Break (or vacation) in Galveston.  However, they were not enjoying the surf, sand, and sun.  Instead they were hard at work helping families and churches rebuild from hurricane Ike.  There are still many people who are suffering from the effects of last September’s storm.  Mark flew down Tuesday to join the group for a few days.  It was hard work but very fulfilling.  Mark’s plane got in about 9:00 p.m. and Joshua and the rest arrived in at about 12:10 a.m.  It is good to have everyone home – at least for a few hours.

The efforts of our youth were highlighted in the Houston Chronical.  Skylar is pictured here working with drywall.  Click the following link to view the video their work.

http://www.facebook.com/ext/share.php?sid=56746904522&h=TPB8B&u=1L20r&ref=mf
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Day 5 of Spring Break: A Day in the Clinic

Spring Break Projects

Spring Break is passing far to quickly. I am making a dent in my list of projects. Yesterday, I finished reorganizing and cleaning out the garage. I am able to pull the van in the garage again. Micah continues to struggle walking and the slope of the driveway was becoming increasingly difficult and while trying to get in the van through the garage also has its difficulties at least he is on level ground.  Today, we went to the carwash after Micah’s clinic visit.  I like vacuuming the car at the carwash so I don’t have to pull the vacuum outside.  When we got home I did the Armor All thing.  Now I have a clean car to put in a clean garage. 

I am not making much of a dent in my online list of things to do.  In November, we purchased a new Dell XPS laptop for me.  I was needing a powerful computer to work on the Choctaw-Nicoma Park Websites and I wanted to have one I could take to each school to work with teachers and administrators concerning their websites.  Well in four months, I have had to have it worked on twice.  I burned out the motherboard the first month.  I took it in for the second time on Friday and while I obviously have another computer to work on, it becomes very time consuming to have to back up all of the files; make sure all of the software is on the other computer; and work from an external hard drive.  And it alway messes up my email files.  So if you are one of those schools that is waiting for Janna to finish your changes and updates to your website – Sorry, it may be a while.

Micah’s Clinic Visit

Micah had a pre-admit appointment in the Oncology Clinic today. We saw the new Physician’s Assistant, Erin O’Donnel. She adds to the list of wonderful medical professionals that are taking care of Micah.  I showed up today with a list of questions to consider. First, Micah is passing blood when he stools and while it is probably hemroids we want to make sure. With all of the scar tissue and a historic abscess we would like to know for sure.  So when we admit on Friday, Dr. Gruno, our Gastroenterologist will be coming by to discuss what we need to do.  We may be considering a lower GI scope.

Next, we talked about what we need to do concerning Micah’s reflex sympathetic dystrophy.  Micah has become so protective of the foot that his leg has become drawn.  The  hamstring and the tendons down the back of his leg are involved now.  He hardly walks and will not let us or his physical therapist work on it.  He wants us to carry him from his bed to the chair if he even wants to get up.  The pain management team will also be coming to see us on Friday.

the guestbook page

Hey after over a year of using WordPress for our blog I figured out the right settings so that the comments on our guestbook show the most recent one first.  Before you had to scroll down through all of the older entries to read the most recent.  Now you don’t.  Leave your thoughts and prayers for Micah and the rest of our family on our guestbook page or comment on any blog post.  We would love to hear from you!!!!!

Continuing to reminisce -

Doing our taxes has also reminded me of Micah’s age and according to most government agencies Micah is an adult.  Emotions well up just thinking about this.  Micah is old enough to vote, register for the draft, graduate high school, go to college, have his own home, have a job, get married  . . .

Throughout my reflections of Micah’s Journey, I have avoided sharing much of the intense emotion attached to our daily lives.  Mark and I desire to trust God and know he has a perfect plan for Micah and our family.  However, it is these times (tax time included) that I cannot help thinking of how different our life with our 18 year old is in comparison to others. 

When we moved here Micah was in the first grade at Choctaw Elementary.  He has been in school with those same students for 12 years.  This year those students will graduate from high school.  Many have taken their senior pictures, have filled out the paperwork for college, and have taken their ACTs.  Some are struggling with their own identities and conflict has developed with their parents.  Some may even be making plans for marriage or may be involved in relationships that will someday lead to marriage.

Many of my friends are parents of an 18 year old.  I know many of you are also reflecting on the speed at which 18 years has passed.  Some are beaming with pride over their student’s academic or athletic accomplishments.  Some are struggling with how to define your changing relationship with your student.

I am not asking for sympathy.  I am using our situation with Micah as a point of reference.  Don’t take these milestones of life for granted.  Simply remember – Micah will never graduate high school; at least not with the general academic expectations.  In fact I had once hoped Micah would at least learn to read.  Micah will not reach the depth of relationship and maturity to take a partner for life.  He will not buy or rent his own home.  Micah will always live with us – remember that in 18 years, Micah has never been out alone, been home alone, or even taken a bath alone.   We love Micah more that life and will take care of him for as long as he lives but please don’t miss the message here:

Parents and students – please don’t take for granted the life you have been given.  Students, be all you can be.  Strive for excellence and consider each day a gift from God.  Consider what is most important and don’t waist a moment on the insignificant.  Build your character with integrity and kindness.  And finally, remember this:

“Love the Lord your God with all your heart and with all your soul and with all your mind.  And love your neighbor as yourself.”