Just Two More Miles

Sunday, January 25, 2015

My friend, Melanie, and I have been friends for years. We’ve shared so much life together. Much of it has been while we’ve run miles and miles and miles on the trails. Training for races, running for “fun,” running to show others new trails, running for therapy. The first time I ran after my father died, I couldn’t stop the tears. She promptly burst into tears with me. We stood on the trail, hugging, and crying.  She taught me compassion, friendship and how to dig deep, that when I was tired, I always had two more miles in me.

I think I can speak for my family when I say we’re tired. This cancer journey has been a marathon for sure.  We’ve once again learned the lesson that we always have two more miles in us!

The last two miles of a race can be some of the most exhausting miles you will ever run. You can see the finish line, you can hear the crowds, you can feel the victory that is almost yours, but you still have to put one foot in front of the other to get there. Some people are full of adrenaline and pick up the pace. Others collapse as they cross the finish line.  It wasn’t easy. At times, it wasn’t even fun. Some you know gave up a long time ago. Still others barely break a sweat and make it look so easy. Either way, you’ve done it. You’ve accomplished a goal.

What has all this to do with Christopher, you ask? Folks….we have TWO MORE MILES to the finish line!!!!! Two more clinic visits. TWO!!! The finish line is in sight!!!

I think this is one of those uphill finishes. Slow and steady, in pain, but determined and excited.

Christopher has been having knee pain since the beginning of the semester. A phone call to his oncologist was in order.  Dr. Kothari said “Is the pain enough to keep you  from going for a run right now?” When Christopher said yes, it was decided that an x-ray be done as soon as he got home for Thanksgiving.

The day after Thanksgiving, Scott and Christopher made the trip to Children’s Hospital to have the ordered x-rays.

Tuesday morning after Thanksgiving, Dr. Kothari called me to say he was going to order an MRI as soon as Christopher was back from finals.  He’d seen the x-rays and needed more images to confirm what damage had been done. Christopher was told to take it easy until he got home. We were concerned at the speed this was going. Pleased that time wasn’t being wasted, but we were wondering how serious this was.

Monday, December 15 Christopher and I were off for his MRI. I’d like it officially noted, that we were not only ON time for this visit, but we were EARLY. EARLY I tell ya!!!! Didn’t make much difference, just gave us even more time to enjoy the waiting room as they were running behind. I hadn’t filled out the parents form to enter the scan room while Christopher had his MRI, and because Christopher is really okay by himself, I stayed in the waiting room. The MRI took a little over an hour.

We had time for lunch before the scheduled appointment with Dr. Kothari. Once again we were greeted with “What took you so long, I’ve been waiting for you!!” It’s like a play date. If you’ve met Alok, you’d understand.

We spend quite a bit of time visiting, telling stories, laughing, and catching up during each visit. It’s this personal touch, the relationship that has formed over these last few years that make this journey bearable.

The nurses decided that between Christopher and the good doctor, Alok’s beard, though gross, wins the beard contest.  He grows the beard to shave it for St. Baldricks, but he also takes pleasure in torturing the nurses who don’t like it. I won’t lie, this makes me laugh.

Shameless plug here: As I mentioned, Dr Kothari is once again participating in the St Baldricks fundraiser. The St. Baldrick’s Foundation is a volunteer-driven charity committed to funding the most promising research to find cures for childhood cancers and give survivors long, healthy lives.  Please consider making a donation as a thank you for all Dr. K has done for Christopher, our family (I may or may not have texted him from the beach in Florida regarding a cut on Rory’s hand), as well as his other patients and cancer research. He’s the real deal!!

https://www.stbaldricks.org/participants/mypage/736396/2015

Don’t ask about the picture, I don’t know.

Now the bets are on as to which guy will get married first. The nurses are putting their money on Christopher.

When we finally got down to business, Dr. Kothari looked at Christopher and said “Dude, your knees are all kind of messed up.”  (The medical term for that would be “Avascular Necrosis.”)

What is Avascular Necrosis? Good question.

According to WebMD: Avascular necrosis is bone death that occurs when the blood supply to the bones is decreased or stopped. Without an adequate blood supply, the bone breaks down and dies and collapses. If the bone affected is near a joint, the joint may also collapse. Although any bone can be affected, avascular necrosis most often affects ends of the long bones, such as the upper leg bone at the hip.

Symptoms include mild to moderate hip or groin pain, decreased hip movement, and a limp. Pain may be sudden and become worse with standing or walking. Rest usually relieves the pain.

Long term steroid use is the culprit here. Steroids can slow or stop the flow of blood to the bones. Two years of steroids have led us to this point.

What does this mean for Christopher?  It meant a visit with an orthopedic surgeon. This boy knows how to party over his school breaks.

All the x-rays and scans were sent to a highly recommended Orthopedic Surgeon, Dr. Denis Nam. We were very impressed. He walked into the room and introduced himself humbly, saying “Hi, I’m Denis.”  He had Christopher walk so he could see his stride. Dr. Nam manipulated his knees and legs to check for knee and hip placement, as well as pain. He pulled up the x-ray and MRI results to show us what we already suspected.

(These are not Christopher’s knees, just in case the knee models recognize themselves and want credit.)

This knee on the left is a healthy knee. The white arrow is pointing to cartilage.

The knee on the right is showing some avascular necrosis, the dark spot, being pointed out by the black arrows.

Taking into account that Christopher’s knees are “all kinds of messed up” you have to picture a much bigger area in his knee joints.  There is considerable damage.

One good thing we discovered is that according to Dr. Nam, Christopher’s knee cartilage is pristine! I’m pretty sure this will impress the ladies.

We went to this doctor visit expecting to be set up with some physical therapy. None was prescribed. We’re not exactly sure why, but it could be that he wouldn’t benefit from increased activity. Christopher has been told no running and no high impact activities (hmmm, snowboarding? Jumping for volleyball??). Swimming, cycling, all those kinds of activities are encouraged. (Cycling? If only we knew someone who could help with that!) If the pain in his knees gets to be too much, he is to use crutches until the pain subsides and avoid all weight bearing activities.

Unfortunately, not much is known about this disease. There are no promises that it will get worse, but no guarantees that it will get better. We were told that how the boys’ knees are in a year, will probably be how they will be the rest of his life. We are not putting God in a box here. He is able to do immeasurably more than we can imagine!

At this point, Christopher uses a knee brace daily. He describes his knees as feeling weak, or like they could give out doing certain activities. Some days, just walking through a store he is aware of his discomfort level. Walking around campus and certainly after volleyball practice, he is hurting.  Some days, he’s not aware of the pain. He is allowed to use Tylenol for pain, so long as he doesn’t have a fever.  He can also take oxycodone if needed but that tends to make him sleepy and feel slightly out of it. Not ideal while trying to get through a day of classes.

We left the visit with instructions to return in six months for scans, to check the progression of the disease. Also, if he feels any changes or the pain is unbearable, he is to see Dr. Nam immediately.  “Live your life,” were the words with which Dr. Nam encouraged Christopher. A long way down the road, Christopher may be a good  candidate for total joint replacement surgery.

We naively didn’t expect to see any long term effects from chemo until much later. To hear you have permanent knee damage at such a young age is quite a blow.

A few things you’ve learned about Christopher through sharing this journey with us, he is determined, he has perseverance, he has a strong faith, and he will come out on top. This is just one more curve ball that we turn over to God. But we’re tired. And a little mad. I know I’ve had to say to God “REALLY?????”

As we’re in these last two miles of this race, we are checking off all the lasts! The last LP!!! The last clinic visit in Asheville, NC.  The last of steroids!!

The finish line is in sight. Thank you for being with us through this long, long race. Please continue to pray. This is hard. It’s easy to lose sight of whom we should make our focus when we busy ourselves with worry over money, bills, and financial aid.  These things are important for sure, but we must continue to put God first. He must be what we strive towards first. Every single step, every mile we run. He was with us at the start line, ran, walked, crawled next to us each step, and He will be cheering the loudest when Christopher rings that bell!

Christopher was once again given a gift to help cover tuition for this semester. We had prayed and prayed, trusting God to provide. We were prepared though, for him to come home if need be.

There are so many times I’ve questioned God’s “No” answers. I know deep in my heart, that God’s ways are perfect. I trust Him. When this tuition gift appeared, I found myself, for the very first time, questioning God’s “Yes.” Maybe I don’t truly trust God enough to provide?? Humbling!

To receive a gift you can never repay, that is given totally out of love, to further God’s kingdom through Christopher?? How do you grasp that? How can we fully understand how much God loves us? Didn’t Jesus die for us, to give us a gift we haven’t earned, that we can never repay, just because He loves us??

A friend helped me see it by saying it like this “God is more in love with you than you will ever understand. He needs your son to glorify Him, so He’s making it happen.”

That has been our prayer from the very beginning. God, be glorified through Christopher.

Run your race to victory, Christopher!!! Only two miles to go!!!

Another October 28

October 28, 2014

Today is significant in that it’s an ordinary day. Rory went to school, I went to work, Scott rode this morning before going to work. I went to the bank and grocery store.

Two years ago, October 28, 2012, was the most unordinary day of our lives. When the phone rang, I was standing by my front door, expecting the call knowing Scott had taken the boy to Urgent Care after church. As I answered the phone Christopher said “Hi Mom, it’s me. I’m fine. Don’t freak out. The doctor at urgent care suspects Lymphoma and he’s sending me to the hospital for more tests.” I remember looking out the window of our front door and seeing our neighbors getting ready for our annual neighborhood chili cook off. It was almost surreal hearing my son had cancer and yet seeing life going on as normal right before my eyes. I remember thinking “This is the part in movies where people get bad news and faint or drop to their knee’s crying.” I also remember good old Max was standing by my side.

I knew we needed prayer. I made some phone calls then went outside to find my friend Vicki.  I thought I had it all together as I walked across the street. Eddie was sitting outside assembling something and as he looked up, I asked him where Vicki was. I could tell from his expression and the way he called for Vicki, that I was obviously not ok. I found Vicki and told her what was going on. As we stood in the middle of the street, she wrapped me in her arms and just let me sob. As I composed myself, we walked back to my house and she sat with me. We prayed.

Sherry Miller called and asked if I wanted her to come over. I immediately said yes! Sherry had walked this road before. Her sweet daughter, Taylor, lost her battle with cancer. Taylor had been one of Christopher’s friends for a long time. I knew Sherry’s presence and strength would be a great source of comfort. Judy came. Caylee and Joey showed up. God knew I needed to see Joey that day. Joey was in the middle of chemo for a relapse of Leukemia. (I’m so happy to share that Joey has won this battle again!!!)

As the day wound down, and I knew Christopher and Scott were settled in at the hospital, surrounded by friends, exhaustion set in. You know, the kind of exhaustion that is so overwhelming, you can’t really sleep? One benefit of this type of exhaustion is an elevated sense of God’s presence. It is enough.

Around midnight, I heard Luke’s car in the driveway. He came in with arms loaded with food for breakfast and an overnight bag. I remember thinking after Christopher’s call that maybe I would call Luke and ask him to come stay with Rory and I. I figured I needed to keep things as normal as possible for Rory and so I didn’t ask. The beauty of Luke showing up without being asked is that Rory didn’t find it out of the ordinary! I slept much better with Luke being home and getting a giant hug from him. Luke was up before us and had a hot breakfast of pancakes and eggs waiting when we came down stairs.

We are now down to five months left of treatment. We’ve had a small bump in the road but that is behind us.

September 6, 2014 found the boy making a trip to Urgent Care.

I had been spending time in prayer, really immersed in God’s presence. I knew I was being prepared for something. As I was in the middle of my quiet time, the phone rang. I knew it was Christopher (and that was before his caller ID ring began and no, I didn’t look at caller ID.)

Christopher said he’d woken up with a rash that was causing him some pain and was probably going to go have it checked out. He had a scheduled clinic visit on that next Monday. He told me that he hadn’t been feeling well for a few days. That always sends up a red flag. He decided to wait for one of his buddies to go with him to Urgent Care. I asked if he was just feeling so badly that he couldn’t drive himself or if he wanted the company. He said he needed the company. I was glad he waited for Sam to go with him. I could hear stress and concern in Christopher’s voice. That’s the part that broke my heart.

I called Mary Jo and told her what was going in with the boy. She stopped over and said that she thought it sounded like Shingles. I shared that information with Christopher.  The boy texted me to let me know they were on the way to Urgent Care. He had communicated what was going on with his doctor in Asheville and it was she that suggested he go to Urgent Care as it would be cheaper than an ER visit. I love that doctor.

I kept myself busy waiting for the phone call with results. I don’t think it was even 45 minutes before Christopher called and said “Mary Jo was right!! It’s shingles!” I wish you could have heard his voice before and after to appreciate the relief we all felt.

Christopher was put on a round of Acyclovir and told to take pain meds. He got settled into his room and fell asleep. I texted our doctor here to ask how serious this was. So long as Christopher took his medicine, it would be fine. If he didn’t, then it could be very serious.

I talked to Christopher the next day. He really concerned me. You could hear how uncomfortable he was and how poorly he was feeling. I asked him if he wanted me to come down. “I’m just going to try to make it through the day. I’ll let you know.”

This was one of those moments that I found cancer making me angry. No mother ever wants to hear her child in pain and say “I’m just going to try and make it through the day.” I started doing laundry. I went to work that evening while Rory was at youth group to get things in order just in case I needed to jump in the car and head to Tennessee. I emailed the staff at Milligan to let them know what was going on with Christopher. Within thirty minutes of sending the email, our friend Bill Greer (also the President of Milligan) went to check on Christopher in person.

Christopher went to his scheduled clinic visit on Monday. According to his doctor, he was ahead of the game healing wise. He was to avoid the cafeteria and wasn’t physically up to sitting through class all week. The beauty of pain meds is two fold. The first being obvious! He was able to get semi comfortable. The second beauty is that Christopher is VERY talkative and entertaining when he’s taking pain meds. We had some great phone conversations.

We are thankful for modern medicine but also for the power of prayer. Our heartfelt thanks to all those who lifted Christopher in prayer!!  Christopher said “I never thought I’d be so thankful to have shingles!”  Cancer gets into all your thoughts. Being human, all sorts of things race through your mind. You should hear some of the conversations God and I have. It sounds so simple to lay your burdens at the foot of the cross and let God handle them. I have much work to do.

We share so many burdens but I am a firm believer in sharing our joys as well.

We were able to go to Milligan for Homecoming weekend this month. It was the first visit that we were not going down to bring the boy home for chemo, or to go for a doctor visit. It was purely for fun!! Luke and Audrey were able to join us! For those who don’t know, Audrey and Luke were engaged just a few weeks ago. We are thrilled to claim Audrey as another fake member of our family!! Not only do we love Audrey for who she is and the fact that she is marrying Luke, she is also a Milligan graduate!!

We had such a great visit. We arrived on campus Friday evening. We piled into Christopher’s car and went to dinner. We returned back to the dorm and all the guys began showing up at Christopher’s room to say hello, give hugs all around, and visit. This may be because they are great guys and/or because they know I brought toasted ravioli for them.

Rory stayed in the dorm with Christopher. I don’t know which brother loves that more!!

Saturday we got to campus around noon. We had lunch in the SUB, fully enjoying the weather and Starbucks on campus. Following lunch we watched the parade. It’s a legit parade, complete with candy, but it’s only about 15 minutes long. We were able to visit with some friends and professors that Scott and I knew from our days at Milligan. We literally stopped traffic when we saw Coach and Mrs. Walker drive onto campus after the parade. We ran over, gave hugs, and promised to meet up later to visit.

Next stop was a haircut for Christopher at Sports Clips, or as Rory called it “Short Clips” because “how can he have gotten his hair cut that quickly?” Sure enough, Scott had to trim a few places and the boy was good to go. We then went to the grocery store to get the needed materials to make dinner for the boys.

Saturday evening we got to spend sometime visiting with Coach Walker. He is truly a remarkable person to spend time with. You would never know he was 90. He has incredible stories to share and always makes you feel so loved.  Coach was the Athletic Director at Milligan for 50 years. He has coached every sport Milligan has ever offered. He was written up in Sports Illustrated a few years ago! Seeing Coach is always one of the high lights of our trips to Tennessee!! Coach is so caring and calls Scott frequently to check on Christopher.

We attended the soccer game that evening and then headed up to the Village to make dinner for all the guys. We actually had a little leftover!!

Sunday morning we went to church and then to lunch. The weather was beautiful as we sat outside and waited for our food that may have taken forever to get, but was worth the wait!

Next a quick stop at Old Navy and then took the boy back to campus to change and get to volleyball practice at 4pm. I spent a lot of time sitting on the bleachers at the field house watching Scott play basketball. I found myself watching my son playing volleyball in the same gym where I watched Scott play more than 25 years ago.

Looking at Christopher you’d never know his situation. All you see is a hard working college athlete. So many emotions were going through me. Joy at seeing the boy working hard and able to play a sport he loves. Frustration at seeing the effects of the medicine on his joints and muscles, knowing his knees were hurting. Happiness that even though he has to overcome so much to reach his goals, he’s able to be at school. I admit, I was sort of a mess for a bit and had to step outside to compose myself.  Christopher is mostly a designated server (if I understand that properly.) Christopher’s serves look strong. It was fun to sit with Scott and watch our son.

Luke and Audrey met us after practice.  We sat at the grill and to say we inhaled two Buffalo Cookies is an understatement. I’m not even sure everyone left with all appendages in tact.

We left the boys on campus to go to Vespers and Scott and I went back to visit with Tom and Barbara, and Craig and Carrie Lynn.  The next morning we met Christopher for breakfast in the school cafeteria. It was as delicious as it sounds! We saw him safely off to class and began our long drive home. Knowing Thanksgiving is only about three weeks away made our goodbyes just a bit less sad.

We had such a very good weekend. God is good – in the hard moments of life as well as the good moments. There is no doubt in my mind that this is part of the lesson we are to learn on this journey.

I end this update asking for prayer as cold and flu season is here. While Christopher’s counts have been good lately and his body is growing stronger, we still have to be vigilant as his immune system remains suppressed. Thank you for your faithful prayers these last two years. We are grateful.

Looking Back, Looking Up, Looking Forward

August 31, 2014

I remember shortly after Christopher was diagnosed we had a conversation on the way home from clinic. Our journey had just begun, we didn’t know what the road ahead would hold. The conversation revolved around this thought – how will this journey change us, how will it shape us, and how can we honor God through it?

The day Christopher and Scott were airlifted to St Louis hold a lot of memories for me. These are some of things going through my head that day:

The cancer was such a fast growing cancer, and the mass in Christopher’s chest was pressing against his vital organs, that it was too dangerous for him to ride 10 hours in a car. Pressing against vital organs. Too dangerous to drive.

Each helicopter I saw on the way to the hospital, I wondered if that was my child. I will never look at helicopters the same way again (or air ambulances).

As I drove to the hospital to meet my family, I needed something to occupy my mind. I started singing a song from my childhood “The joy of the Lord is my strength, the joy of the Lord is my strength, the joy of the Lord is my strength, the joy of the Lord is my strength.” I sang it over and over again until it dawned on me. No matter how this battle turns out, Christopher has given his life completely to the Lord and I need not worry about his salvation. That is what gave me the strength to face what was to come. The JOY of the Lord is my STRENGTH!

The flight crew from Children’s flew to Tennessee, drove the ambulance to the hospital, escorted them from his room, took the ambulance out to the runway to the waiting plane, flew them back to St Louis, got into the next ambulance, and brought them to his room at Children’s. Three RN’s, one pilot, Scott, and Christopher. I remember being shocked that three nurses were on the plane. It was a sobering moment. Three RN’s??

Here we are almost two years later. How has this changed us? How has it shaped us? Are we honoring God?

Have we changed? Most likely. We are stronger. We have more perseverance. We are more compassionate. We are grateful. We are closer.

How has it shaped us? We are learning what’s important in life and what isn’t. Time with those we love? Important! Being the perfect weight and size? Not as important. Right priorities? Time with God. He is enough. Driving fancy cars or having the most up to date fashions? Never been that big a deal to us. Striving to be better parents and spouses? Very important. Failing at those? Accepting forgiveness and understanding God’s grace. Taking care of ourselves and each other? Always!!

Are we honoring God? That is my prayer. Are people seeing Christ in us while we’re at clinic? Do they hear the love of God in our speech as we voice our frustrations? Do we whine and complain about bills yet fail to offer thanks for the many things we do have?

Cancer has brought my prayer life to a whole new level. It has changed my selfish prayers to begging for Christopher’s healing. Yet, having to pray “Not my will, but yours God” is the hardest thing I’ve ever had to pray. Can I truly surrender my child?

Do I want people to know our pain, our fears, our suffering? No. Do I want people to see me place my full trust in the one that casts out all fear? Yes.

Is cancer softening our hearts, molding us to be gentle and more humble? I pray this is so.

A highlight of this summer was that Christopher was chosen as the Athlete in Need for the Nike Festival of Miles in St. Louis. All donations were given to his Benefit Fund. This was a huge blessing and assured peace for purchasing all his meds through the end of chemo. It was a great night surrounded by people we love who have walked this road with us faithfully!

 

 

Christopher being introduced to the crowd at the St. Louis University High School track.  Little did he know he’d be given the microphone and asked to speak.  He did an excellent job of thanking everyone for coming, explaining a little bit about himself, and wishing all the athlete’s luck in their races.

 

Our peeps!

 

And just so you know, the winning time for the elite men’s mile was 3:55.29! Congratulations again to Jordan McNamara!

 

So, what’s the latest on the boy you ask?

 

If you remember, last summer there were days he could hardly get out of bed or walk without pain.  There was the concern about getting him back to school and how he would do physically.

 

Fast forward to this summer. God works, people. And His ways are the best.

 

Stick with me as I time hop.

 

Over two years ago some of our best friends in the world, followed God’s call and moved to Virginia to accept the calling to full time ministry. Zach and Ashlei Wood’s are not only some of our closest friends, but have been Christopher’s youth sponsors from 6^th grade through graduation. They have had a huge influence in helping to shape Christopher into the man of God he has become.

 

The day Zach and Ashlei were to formally meet their new church family at the annual Fall Festival was the day I had to call Ashlei and tell her that Christopher had been diagnosed with cancer. Had they still been in Edwardsville, these two would have been the first ones to my house, the ones who went to the hospital with us, who would have cared for Rory while we were at the hospital. Even far away, they cried with us, carried our burdens with us, prayed with us, loved us.

 

I could not fathom God’s timing in their move. Of course, I also didn’t expect a cancer diagnosis. I just knew that God honors His children’s obedience.

 

Christopher has declared a Bible major with a youth ministry minor. This will allow him to serve Christ in a church setting, a camp setting, or perhaps in a larger setting, such as Christ in Youth. One of the requirements for this major is an internship in ministry. The wheels started turning for Christopher back in the spring while he was home going through chemo. We began praying. The boy started having some conversations with Zach. Christopher went back to school and finished another year.

 

After much prayer on all parts, Christopher was offered a summer internship at Blue Ridge Church of Christ. God really answered a prayer. If the boy wasn’t going to be home with us, this is the only other option that gave me peace. I knew without a doubt he would be loved and cared for as if he was their own.

 

The people at Blue Ridge opened their hearts to Christopher. The boy got to see the daily workings of a church staff and all that goes into preparing for working with youth groups. He grew in great respect for this church staff and came to love the people in this church family. He went on week long conferences with both high school and middle school groups, helped with VBS, helped put together family events for the entire church, formed relationships, and grew spiritually.

 

The boy still had monthly appointments in Asheville, NC to see his doctor there for treatment. Daily oral meds continue.

 

When I think back to last summer and the things he wasn’t able to do, I think this picture sums up what a difference a year makes…

 

 

White water rafting! A far cry from hanging out on the couch like the previous summer!

 

 

I see this picture and I now understand God’s timing. God honored Zach and Ashlei’s obedience. He honored Christopher’s unwaivering faith through this trial. God provides in His timing. Thank you to the Woods family for having Christopher in their home all summer and to Blue Ridge Church of Christ for offering Christopher this opportunity. I pray God has been honored as we have strived to follow and trust Him on this road.

 

While I was so happy he was able to have such a great summer, it was a taste for Scott and I of what the future holds. A long week here, a holiday there, allowing our son to live his life, and live it to the fullest. It fills my heart with joy that he is able to do all these things again, yet the Mom in me is a little sad that as he lives his life, I will know him a little less.

 

The night before Christopher was to come home from Virginia, we were sitting eating dinner with Luke and Audrey. A car pulled up and parked in front of our house. This is not unusual as we live directly in front of the bike trail. As I looked out the window I said “If I didn’t know better, I’d say Luke was here.” Scott said, “If I didn’t know better, I’d say Christopher was here…Wait.. Christopher IS here!!!!”

 

I ran out of the house and grabbed that boy in the biggest hug I think I’ve ever given!!! I don’t like surprises, but that was the best one EVER! Scott, Luke, Audrey, Max, even the neighbors were all there for the reunion. It was a great moment. Puts a smile on my face every time I think of it!

 

Rory was at cross country practice. Christopher’s timing was perfect. It allowed him a little while to visit with everyone before we had to get Rory. We piled into Christopher’s car to go pick him up. Rory didn’t recognize us in the Camry as he was expecting the Jeep. When he saw Christopher get out of the car and walk over to see him, Rory burst into a huge smile and ran to hug his brother.

 

This evening was only made better by a trip to Dairy Queen!!

 

Christopher has returned to Milligan for another year of school. What a road this has been! We still have far to travel. But as I think back to the conversation Christopher and I had that day in the car almost two years ago, I stand in awe of God’s faithfulness. And I am once again humbled.

 

The words of this song sum this up well! May it minister to your heart as it has mine.

Turning 21

Turning 21 can be a very memorable experience. Let me tell you the story of how Christopher began his 21^st year.

Saturday, February 8, 2014 10:39pm

Christopher Ryan Shaw officially turns twenty one.

Wednesday, February 12, 2014 3:45 am.

The phone rings. I know instinctively that it’s Christopher and he’s got a fever and heading to the ER. Why else would my phone ring that early? ‘Snow day for Edwardsville?’ I wonder for a brief second before saying “Hello” knowing full well it’s no snow day. “Hi Mom. I have a fever and just wanted to let you know I’m heading to the ER to get checked out. I’ve already talked to my doctor here to let them know what’s going on.” I asked how he was feeling other than the fever, hearing some congestion in his voice. He replied that he was feeling okay, but the fact that the fever woke him up in the middle of the night, he decided to check his temperature. It was 100.8. The rule that has been instilled in us from the very beginning, and repeated during every visit during discharge instructions (you receive discharge papers after every clinic visit)  “Call Clinic or exchange for T>101 x 1 (fever of 101 just once), T > 100.4 x 2 (fever over 100.4 two consecutive times in an hour).”

A fever is a big deal for anyone. For a cancer patient, there are even more concerns. Because there is a port in his chest, the first concern is infection in the port. Any foreign item in your body has the potential to become infected. We do not want an infected central line. The next concern is obviously the cause of the fever. No longer can you just take Tylenol or Ibuprofen for a fever. You MUST rule out anything that could cause infection. A fever will involve blood work and antibiotics.

Christopher woke up his friend and roommate, Matt, who gladly drove Christopher to the Johnson City Medical Center. This is where he was originally diagnosed back in October 2012. As they drove to the ER, Christopher explained what would happen. Port access, labs, fluids, and most likely an antibiotic drip, and if his counts were ok, then discharged.

The type of cancer Christopher has is largely considered a childhood cancer and because of that, even though he was 19 when diagnosed, he is treated under pediatric protocol. This means going to pediatric clinics and hospitals.

Knowing that, it will make sense to you when I say that Christopher and Matt headed to the JCMC Children’s ER. Upon arrival Christopher explained why he was there and what was going on. The person at check in looked at him and said “You realize you’re an adult, right?” After trying to explain why he was at the children’s emergency room, and again getting the same answer, they left and went to the adult ER.

Just as Christopher described to Matt, the process took place as anticipated. I got a text from the boy around 9:30am saying he was back in his dorm room and headed to bed.  All labs had come back negative and he was sent home with an additional 5 days of oral antibiotics. I sent an email to the administration at Milligan explaining the situation and that Christopher was not allowed to go to class or the cafeteria until he was fever free.

Enter snowstorm. The timing of this snow was a total God thing. I realize that is an obvious statement. The timing really was perfect because as soon as the guys got back to campus, it began to snow. Classes ended up being cancelled until the following Monday!

Thursday, February 20, 2014

Rory and I drive to Athens, Tennessee to spend a night visiting with Rick and Lea Ann Arbuthnot and family. Such a nice way to break up the trip and spend some time laughing, drinking latte’s from their coffee bar, and enjoying time with friends.

We arrived at Milligan around 4:00pm. Rory called Christopher as we got near to find out where he was. He was playing Frisbee on Pardee lawn. As soon as I heard that I would have bet the house that the boy was playing barefoot. A mother just knows these things. Sure enough, there he was, running around, barefoot. I tried to be sure I hugged him first before lecturing him about the dangers of going barefoot, getting a cut and possible infection. Pretty sure he ignored me. We spent an hour visiting, watching the ultimate Frisbee game, and enjoying the sunshine. I was able to finally meet Christopher’s roommate Matt. Saying a simple thank you felt so inadequate to tell him how much we appreciated what he did for us.

I left Rory with Christopher and headed over to my home away from home with Tom and Barbara Barkes. Walking into their home is like a balm to my weary soul. I enjoyed a yummy dinner and we headed over to watch their granddaughter’s basketball game. Carrie Lynn (Lea Ann’s sister), and her husband Craig and their daughters, live right next door to Tom and Barbara. It’s always a fun reunion as Lea Ann, Carrie Lynn and I ran around together during our Milligan days.

Rory missed two days of school to join me on this trip but his company on the way there was invaluable for me, and the time spent with his brother was priceless. How many of you got to spend the weekend on a college campus when you were 12? Sleeping in the dorm, eating in the cafeteria, staying up late with the guys? Rory LOVED it! This was not his first time staying with Christopher and I’m glad he’s beginning to love Milligan as much as the rest of us.

Saturday, I met up with the boys around 3:00pm. We sat outside at Starbucks visiting and enjoying the sunny afternoon. Another dinner with Tom and Barbara, some watching of the Olympics, and a good night sleep was my agenda for the rest of the day.

We left Milligan Sunday morning around 10:00am and headed home. We did a quick family birthday party for Christopher before heading to bed.

Monday, February 24, 2014 1:00pm

Christopher and I arrived at Children’s, took the elevator up to the clinic, walked to the office and stopped. We looked at each other and asked “Didn’t there used to be a door here?” Apparently we’re not very good at reading the signs that said “Clinic is now located across the hall.”

As Christopher was getting his vitals checked, Dr Kothari saw me across the hall and said “I have a job for you.” I know, I was curious too. No telling what he’d need. He was participating in St Baldricks, an event where he would be shaving his head to raise money for cancer research. His idea was to have me post his St Baldrick’s page because apparently I HAVE people, I KNOW people, and I could probably get a lot of my people to donate. I gladly posted the information. Any money he would raise goes directly to pediatric cancer research. Being a second year fellow, Dr. Kothari spends one day a week in clinic seeing his patients, and the rest of the time he’s in the lab doing research. (Shameless plug here….it’s not too late to donate).

http://www.stbaldricks.org/participants/mypage/668343/2014

Day one of Nelarabine went well. We found out that his ANC while at the ER a few weeks prior had been about 800. This day is was around 1000. I was pleased to see that. Christopher fell asleep when we got home and slept until dinner.

Tuesday, February 25, 2014

Day two of Nelarabine went smoothly. Another non eventful evening.

Wednesday, February 26, 2014

Scott is off and able to go to clinic with us. We arrive, get settled in a room, he’s accessed and we wait for the Nelarabine to arrive from the pharmacy. Scott makes the ever important coffee run. While he’s gone, Christopher asks me “Mom, do I look dehydrated?” I didn’t think he looked terribly dehydrated but he did look tired. He told me he also had a little bit of a headache. Immediately, I got up and checked his forehead. It’s warm. I find his nurse and ask her to grab a thermometer and check his temperature. This is when the fun begins! 100.2. At this point it’s not high enough to do anything. They draw labs and check with his medical team to see what they want to do about administering chemo. It is decided that he still receive the scheduled chemo. His ANC comes back at 1725. I remember saying to Christopher “I wonder if you have something brewing.” HA! Little did we know!!

Funny story here – the whole fever thing came up while Scott was at Starbucks. I was texting my friend Carla (who has been one of my greatest blessing during this journey) to let her know what was going on. Christopher saw me and said “Are you telling Dad about my fever?” “No, why do you ask?” was my reply. The boy promptly says “Oh good, because if you told him now, he’d totally forget our whole order.” It’s all about priorities people!!

While at clinic, his fever never got any higher. We were frustrated to be sent home but that is the protocol. Sure enough, by 9:00pm that evening, his temperature had risen to 101.8. We called the exchange, spoke with Dr. Cluster, and off to the ER Scott and the boy went. I lay down with Rory hoping to get some sleep (as if I could actually sleep with a child at the ER), keeping my phone near by in case they decided to admit. I was pretty sure it would be a repeat of his last ER fever visit due to his ANC being 1725. They arrived home around 4am. The boy ate something and went to bed.

Thursday, February 27, 2014

Christopher woke up with a fever of 102.4 We arrived at clinic and they immediately took him back to an isolation room. By this time Christopher had started coughing quite a bit. The nurse practitioner ordered a breathing treatment. She asked him if he felt like he was having trouble breathing. He couldn’t take a full breath without coughing. She said he’d probably see a big difference in that after thetreatment. His lungs sounded crackly at this point. This was the first time the boy had ever had a breathing treatment. It would make him cough which is the reaction they wanted to help break up the crud in his lungs. It worked. After about 2.5 minutes into the breathing treatment, he began coughing. I grabbed a bucket from one of the nurses. Sure enough, it came in handy. When he recovered, they gave him a break from the treatment, gave him a dose of Zofran to combat nausea, then tried again. This time it went much better. The nurse could hear a difference in his lungs immediately.  He could feel a difference in his breathing as well. The coughing improved. Since they could still hear some noise in his lungs, they sent him for a chest x-ray. The x-ray showed exactly what they thought, some “junk in his lungs” that indicated walking pneumonia. He also tested positive for the Coronavirus.

Nelarabine was held.

When they told us about the virus I said to him “You turn 21 and of course you have to get the Coronavirus.” It took the nurse a minute.

That morning, with the fever he had, I told him to grab some clothes and a toothbrush because I had a feeling with a fever that high, he’d be admitted. Sure enough, I was correct.

The silver lining of having the Coronavirus was it guaranteed us a private room. We were so grateful for this small blessing.

The boy was comfortably (well, as comfortable as one can be when having a fever) settled in his room by 5:00pm. We were lucky enough to have one of the nurses we got to know when Christopher was originally diagnosed. A sweet, familiar face was another small blessing.

The boy was quickly hooked up to fluids and the antibiotic drips began.

Scott and Rory arrived around 6pm. When I told Rory that Christopher had the Coronavirus, without missing a beat Rory asked “Is that because he drank too much beer?” Ah, the humor of a middle school age brother. I didn’t know whether to be shocked he made the connection so quickly or proud that he made the connection so quickly.

Christopher was in isolation during his stay. He was confined to the four walls of his room during his stay. The way he was feeling, I don’t think he saw it as much of a problem.  Any staff that entered would have to wear a gown, mask, and gloves. Scott, Rory, and I didn’t have to wear any because we had already been exposed. Any visitors would have the choice of wearing a mask. The staff would wear everything to keep from taking any germs to other patients.

I stayed the night with Christopher, having come prepared. The night passed the way you would expect a night in the hospital to pass.

Friday, February 28, 2014

This would have been the last day of Nelarabine had everything gone according to schedule. Instead, it was decided to put all chemo on hold and work on fighting the virus.

Another breathing treatment was ordered. Zofran was again given beforehand. He coughed some but not nearly as much as the first time.

That afternoon at 4:00pm, the boy spiked a 104.2 fever. So far, all labs had come back negative so he was able to have Tylenol to help alleviate the fever. By 6pm, it was down to 102.4 and I was feeling much more relieved.

Christopher had not been eating much the last few days. At one point, he suddenly sat up, grabbed the bucket, and started coughing. He’d just started a new antibiotic. I wasn’t sure if getting sick could have been a side effect of the medicine so I went and told the nurses. Dr. Cluster and a nurse both came in. Nausea and vomiting were not a side effect of this medicine. What had happened is the boy woke up and thought “I either need to eat something RIGHT now or I’m going to be sick.” Since he hadn’t eaten there was nothing in his stomach and now he had to deal with dry heaving. As soon as he recovered, he ate two big fruit cups. He was much better after that.

The high fevers were leaving the boy feeling not great. He was exhausted from fighting a fever and all that goes with that. Sweatshirt and pants on, piles of blankets on, sleep. Wake up sweating, throw off covers, remove sweatshirt and pants. Repeat. His fever didn’t spike through the night and he was able to get some rest. He didn’t have much of an appetite and we had to remind him to continue drinking, even though he was getting IV fluids.

Scott spent Friday night with the boy. There’s a pretty decent sized window seat that’s about the size of a twin bed in each room. It’s certainly not the Hilton but it works. Another nice thing about a private room was the fact that we were able to use the bathroom in his room. Sometimes, it really is the small things!

Saturday, March 1, 2014

Saturday morning, I did a few things around the house, ran a few errands to prepare for the potential bad weather that was forecasted, and got Rory’s plans to spend a few nights with a friend in order. It brings no greater peace of mind in knowing you have friends you can, without a doubt, count on to take your child and not have to worry. Thank you Judy, John, and Jacob! What a huge gift, you have no idea.

Luke checked in with me, as he had been the entire time. Long story short, he had some car issues and I told him, if he’d come with me to the hospital, he could have the Camry. I was so tired, I honestly don’t know if I could have driven myself back to St. Louis. I asked him if he’d be willing to drive and he gladly did so while I drank my venti, triple shot, raspberry mocha (which was just enough to take the edge off my exhaustion).

Luke visited with Christopher for a while and this was a very good thing. I’m sure Christopher was grateful to see a face other than his parents or his medical team.

During Luke’s visit, two pulmonary doctors came in to speak with us. The medical team was concerned about finding the source of Christopher’s fever. Because there was the potential for a different pneumonia, a procedure called a bronchoscopy was scheduled for Sunday morning. This procedure would involve flushing his lungs with a saline solution and withdrawing the fluid. He would have to go to the OR as he would need to be sedated for this. This information would tell them if he had Pneumocystis Pneumonia.

I wish I could say I wasn’t too worried about this. This day was probably my hardest one. I found the pulmonary doctors in the hall and asked them for something encouraging. When one of the doctors saw I was teary eyed, he said “Oh no, what did I do?” He very kindly encouraged me that if Christopher did have this pneumonia, it was treatable. That was all I needed to feel reassured and know I could face whatever came next. The other doctor, a very, very sweet lady whose name I sadly forget, gave me a big hug and assured me they’d take care of everything.

Again, at exactly 4pm, Christopher spiked another 104.2 fever. We placed cool rags on his head and wrists, and wiped down his arms to try to bring his body temperature down. He was again allowed to have Tylenol because his cultures and blood work were still negative. A few hours later, his fever was down again.

Scott and I both stayed the night so we would both be there in the morning for the procedure.

An interesting thing about this hospital stay! Christopher was pumped full of fluids to help with dehydration as well as low blood pressure. He was also drinking Gatorade. At one point, he had peed 1.5 liters and only been given a liter of fluids. One can be dehydrated even when on fluids. I can’t really explain as this was one of the times I sort of didn’t pay complete attention to the reason given. This quickly resolved itself and all was well.

Sunday, March 2, 2014

We prayed over the boy, hugged and kissed him, and went with them to the OR prep place. Not sure what you call that room? As the time came to go back to the OR, one of the doctors said “No hugs or kisses?” I said not to worry, we made sure to take care of that back in the room. A sweet smile from the boy and off he went behind closed doors. Insert small lump in my throat. The procedure went very well and the boy was back in his room about an hour and a half after he was taken down to the OR. It was like Christmas morning for Scott and I when we got to see that child of ours again.

That afternoon, even though the roads were icy, our friend Paul came to visit. This was just what Christopher needed! Paul is not only our friend, but also a surgeon. He assured us that the procedure Christopher had done was a really simple one. And, seeing our child happy and back in his room, we knew Paul was right!

At one point, the nurse came in. She looked at the antibiotic drip and said “Well, goodness. I thought that would have been done by now.” This didn’t put a lot of our confidence into this nurse. What had happened was the tubing for the antibiotic had somehow gotten misdirected and the only thing happening was that the medicine was cycling through the tubing for two hours, rather than into the boy. I was really glad Paul was there because he told me that on a scale of 1-10, this issue was a 1. They would just give him the med later and all would be well. Small blessings. Paul’s presence and friendship felt like a huge blessing to be honest.

The boy spiked another 104.2 fever around 9pm. This time, he wasn’t aware of it. He’d been watching a movie with Scott and the nurse came in to check vitals. More Tylenol, and back to the movie. I was grateful and encouraged he hadn’t noticed the spike this time. The other two spikes, he was pretty uncomfortable.

Scott went home that night and I stayed with Christopher. It had been an emotionally draining day for me and I feel into a pretty deep sleep that night.

One of the effects of the coronavirus is a low oxygen saturation level. It was one of the first things they noticed at clinic on Thursday and it had stayed low this whole time. When your lungs have crud in them, it keeps them from being able to fully absorb all the oxygen you need. A comfortable level is 92% or above but 100% is ideal. Because of this, the boy had been on oxygen the entire time he’d been admitted. Whenever his level would drop below 87% alarms would go off causing people to come in and check on him. It got to the point each night where I’d just mutter “Christopher, take a breath” and try to go back to sleep.

By Sunday evening, his saturation was improving but he’d get into such a deep sleep, that his heart rate would drop below 60 and that would set off another alarm.

Add to that the beeping when his transfusions would be complete, and well, it makes for a long night. I’d make a trip out to the nurses station to let them know whenever his transfusions were done. At one point in the middle of the night, I stumbled out of his room, looked at the nurses, and could not remember what I was trying to say. The closest thing I could come up with was “His confusion is complete.” The nurses looked at me and I heard one say “Well that’s certainly a good thing!” I just turned around and fell back into my bed.

Monday, March 3, 2014

The beginning of Christopher’s Spring Break. I loved getting to spend extra time with the boy but I was more heartbroken that he had to miss out on yet another college spring break.

Dr. Kothari made a visit today. He gave Christopher a hard time for needing so much attention. He said that he was pretty sure all the cultures would come back negative and he didn’t expect a positive result for pneumonia. He believed everything was viral. While he was there, he turned the boy’s oxygen down. Later that day there was some commotion wondering who’d turned it down as they didn’t see any orders given for that. Christopher was doing well with a lower oxygen level so it wasn’t a real big deal. We quickly pointed fingers at Dr. Kothari and a proper amount of eye rolling from the nurses took place. (Love you Alok!) One of the things Dr. K wanted was for Christopher to sit up in a chair to expand his lungs a little more. Or something like that?!?!

At this point, the thing keeping the boy inpatient was still the fevers and oxygen levels. He didn’t spike any more fevers but he still ran a fever. It was never above 102 all day.

That evening, one of the nurses came in and told us there was a Family Night going on in the room by the cafeteria that involved free snacks and drinks. I went down to see what was going on and hoped to bring back a snack that might appeal to the boy so he would eat. I walked around the room and found juice boxes, animal crackers, and fruit snacks. And yes, I grabbed two of everything.  As I made my way to the door to go back upstairs, one of the volunteers said “I’m sorry your child wasn’t able to come down, please take a treat bag for them.” I thanked the person and then they asked how old my child was.  I was afraid they were going to take back the snacks and treat bag when I replied “He’s 21.” The lady laughed and said “Well then, I’m guessing he doesn’t want a teddy bear?”

When I got to the room I showed Christopher the loot. He wasn’t too interested. I asked if I could open the treat bag. He said yes. My eyes got big as saucers. By now, the boy was starting to shake his head at me. I pulled out a few toys, none of which impressed him. I asked him “Can I have ANYTHING I want in this bag?” Right away he said “You can have whatever you want so long as it does NOT make noise.” I mean really, all I was going to do was play him a nice tune on the purple plastic harmonica.

Tuesday, March 4, 2014

The fever continued but stayed below 101 all day. PT was ordered to get the boy walking on a treadmill. Because he was still in isolation, walking the halls wasn’t allowed and walking in circles in the room wasn’t ideal. Ten minutes on the treadmill with acceptable oxygen saturation and everyone was pleased.

There had been talk about looking for a fungal infection if his fevers continued to spike. Dr. Cluster was in and told us he didn’t believe they needed to pursue this because had there been a fungal infection present, they would not see him recovering on his own. Another step in the right direction.

Today brought a few visitors. Never underestimate the power of a visit. It’s not only good for the patient, but for the family as well. Thanks Matt and Shane!

Wednesday, March 5, 2014

Scott and Christopher had a good night and I woke to a text that the boys fever was down but so was his ANC. At this point he had dropped to 240. I asked if the doctors seemed concerned but Scott said they didn’t seem to be. I, on the other hand…

I spent the day at home, cleaning the house, doing some of Christopher’s laundry, and picking Rory up from school. I didn’t like being away from the hospital but I also didn’t like how much time I’d been away from Rory. Rory and I got back to the hospital around 4pm.

I spoke with his nurse who explained that the drop in the boys ANC was not really of a concern to them for a few reasons. Bear with me as I try to explain!

It is normal to see counts drop 7-10 days after chemo. Christopher had his last dose of Nelarabine a week ago to the day. Also, his body had used up the white blood cells he had to fight the virus, and was now running out of them. His body would need time to recover and produce more. They were not worried as his neutrophil count was recovering quickly and when that happens, the ANC generally recovers pretty soon after that. I’m still not sure that’s 100% accurate but its close.

One encouraging thing every doctor and nurse would mention was how good Christopher looked and acted the whole time he was inpatient. They certainly take that into account when taking care of a patient.

Thursday, March 6

I got to the hospital about 8:45am. Scott went home to get ready to go to work.

PT came in again.  Twenty minutes on the treadmill with no oxygen and everyone was happy. By now, he’d been off oxygen for over 24 hours.

The medical team made rounds around 10:30am. Dr. Cluster and the attending came in and told Christopher he was being discharged today. To say we were surprised was an understatement! I saw the discouragement in Christopher when he was told that it was decided he would make up the two missed Nelarabine treatments on the following Monday and Tuesday. I’m pretty sure Dr. C was surprised at Christopher’s reaction and said “I thought this would be good news?” I explained that the make up Nelarbine days were just another delay in getting the boy back to Milligan.

I called Scott and told him he’d need to come back and get us. We got home around 3pm. It was a nice surprise for Rory when he got home a few minutes later! Christopher napped a while, we had dinner, and both boys got haircuts that evening.

I spent the next few evenings not knowing where I was when I’d wake up in the middle of the night. I’d find myself smiling knowing the boy was sleeping in his own bed.

Monday, March 10, 2014

Christopher’s appointment was at 10:30am. True to form, we were late. Granted, there was traffic on Kingshighway, so we blamed it on that. We arrived at 11:07am. Vitals taken, oxygen saturation was 100%. That boy is such a good oxygen saturator! Ha!

We saw Dr Kothari, clean shaven and with a shiny head! He regaled us with his St. Baldricks story. (Again, it’s not too late to donate!!) The Children’s team raised a great amount of money. We found out that Dr. Kothari fell a few dollars short from beating his roommate in raising money. Three guesses who that was?? His name was mentioned a few times already. Yup. Dr. Cluster.

Dr. Cluster also came to say hello, with a shaved head as well J

The boy was accessed immediately and labs drawn. To begin Nelarabine, ANC has to be above 500. Even though he’d started Nelarbine a few weeks prior, enough time had passed that he needed to make counts again. I think this was THE slowest day in clinic yet. Results finally got to clinic and his ANC was 1120. That’s what we like to see!! His medicine finally arrived at 2:30pm. Christopher was hoping to get the earliest appointment the next morning so that he and Scott could return to Milligan immediately following the appointment.

The nurse came in and said “Bad news. I checked with Dr. Hiyashi and Nelarbine, because it’s a study drug, each dose has to be given exactly 24 hours apart.”

I was thinking “Sweet, now he won’t leave until Wednesday morning.”

Christopher was thinking “At least we can still leave tomorrow.”

We got home around 5pm after making a quick stop at the grocery store to load up on food for the boy to take back to school.

It was a really gorgeous afternoon. It was the first day all winter that all the neighbors were out and we gathered on the front porch for a visit. Christopher decided to go for a run. My eyes welled up with tears watching him run down the trail, his stride looking strong and his form perfect. When he returned, he was happy and relaxed, albeit tired. We talked about his run, how far he made it before he needed to walk, and how he felt overall. I had to remind him that not only had he taken over a year off from running, not only had he had chemo a few hours prior, but he’d also just been in the hospital fighting a virus for over a week.  (Can I just say, all those factors taken into consideration, he still ran faster than I would when I was at peak training runs.) I’ve spent countless hours watching Christopher run but I think this moment was one of the sweetest ones I will never forget.

Tuesday, March 11, 2014

Scott and Christopher went to clinic Tuesday and all went well. They had a good conversation with our friend Karen. Scott isn’t able to go to clinic as much as I am, so speaking with Karen was a very good thing. (Speaking with Karen is always a good thing actually, medically or otherwise). Scott was able to get some clarity on a few things.

We got the car loaded, prayed, got some last minute hugs and kisses in, and Scott and the boy left for Milligan. It was after 5:00pm. Now, not only was I sad, sad, sad, I got to worry about them driving through the night.

Thankfully, it was also Luke’s birthday and he didn’t have plans for dinner. Rory and I took Luke for a birthday dinner. We managed a trip to DQ on the way home for birthday ice cream. Luke stayed for a while and it was a great thing for me to have someone else to focus on. That Luke, not only does Max love him, so does the rest of this family!

Saturday, March 15, 2014

Christopher is happily settled back at Milligan. I miss him like crazy but a bigger part of me is so happy that he overcame another bump in the road of this journey. And he still hasn’t complained.

I received this text from the boy yesterday:

“I should have worn this in the hospital!!”

Love. That. Boy.

Happy Birthday, Shaw Boy

February 8, 2014

 

My dear Christopher,

 

Your father and I prayed for you before we even knew you. We prayed for you the moment we knew you were part of our lives. We were excited, anxious, happy, and maybe even a little shocked to know we were really, truly, having a baby.

 

My pregnancy with you became high risk when I started contracting very early on. We ended up on bed rest together, you and I.  Medicines, home monitors, doctor visits, a few tears, lots of prayer. Lots of prayer. The baby we had come to love was fighting so hard to make it safely into this world.

 

During one of my quiet times of prayer during my pregnancy, I marked your name next to Isaiah 43:1 “But now, thus says the Lord, your Creator, O Jacob, And He who formed you, O Israel, “Do not fear, for I have redeemed you; I have called you by name; you are Mine.” You have been God’s child long before you were mine. I also have this note written next to chapter 43: This chapter reveals the love and care of the One whose spirit lives in us. I never knew how often I would go back to this chapter.

 

Twenty one years ago you came into this world with a fighting spirit. You made your arrival five weeks early. We worked so hard to get you here safely. There was a whole slew of people in the delivery room. So many people helping your entrance into this world – high risk doctors, nurses, the NICU team, your father, but without a doubt, the Great Physician. The presence of God provided the strength and courage we needed.

 

When you finally made your arrival at 10:39pm, they bathed you very quickly, weighed you (7lbs 13oz – at 35 weeks), and showed us our little boy for the first time. You looked like a prize fighter. My poor, sweet baby was so beat up from being born. We heard your tears, saw your little face for just a few seconds, and then you were taken to the Neonatal Intensive Care Unit.

 

Daddy was able to go see you get settled in the NICU after knowing I was okay. Finally around 2:00am, I was able to see you. I was running a fever so I wasn’t allowed to get close to you. It broke my heart to see this baby all hooked up to monitors, bruised, and an oxygen tent over your head.

 

 

 

We weren’t allowed to hold you until you were four days old. What a feeling to finally hold you in my arms the very first time!!! You spent ten days in NICU, next to some babies that were only one and two pounds. I remember one of the nurses arguing with me that you weren’t really early because “how can he be THAT big?” **Piece of advice to future nurses– never argue with a woman who’s just had a baby.

 

I know you know this story already.  It is not the fact that you are now 21 and legally able to buy alcohol that has me amazed this birthday. What amazes me is how you have kept that fighting spirit. You have never once complained. As a little boy, you didn’t complain. You have always thought of others. You have honored your parents. You have shown kindness, you have remained faithful through trials, you have persevered, you continue to allow the Holy Spirit to work in you. You are producing fruit my child! Love, joy, peace, patience, kindness, goodness, faithfulness, gentleness, and self control. (Admit it, you’re singing that, aren’t you?)

 

Do you see how you have grown? Branches weren’t designed to produce fruit, they were designed to have fruit produced through them. The vine does the work. The fruit is a product of the sap that runs from the vine into the branch.  “I am the vine, you are the branches; he who abides in Me and I in him, he will bear much fruit. Apart from me, you can do nothing.”  John 15:5

 

As I’ve watched you fight this battle, and fight you have, I have been humbled by you. I don’t know if I would be able to handle myself with such grace. You have let your gentleness be known to all and the Lord is near. You have chosen to learn to be content in whatever circumstances you are facing. I know this has not been easy but you have chosen not to complain.

 

I saved this text from you because I don’t want you to ever forget what you wrote regarding God as Protector:

 

Some would say that God didn’t protect me when I was diagnosed with Lymphoma, that He stood by and watched.

 

But God HAS protected me, both physically and mentally. In the physical aspect, I’m alive and getting stronger every day. In the mental aspect, He protected me from thinking morbid thoughts and instead gave me hope.

 

Even when I thought I couldn’t handle anymore physical or mental pain, I would remember ‘My God, my Protector, is watching over me.’ And that made me smile.

 

This maturity is what fills my heart with joy as you reach this milestone birthday.

I love you Christopher, more than you will ever know.  Always know that your father and I will never stop praying for you.

 

Happy, happy birthday Shaw boy!

Love,

Shaw Mom

Family, Fevers, and Finals

December 9, 2013. It is nearly Christmas and as I sit near the Christmas tree, I am trying to comprehend all we have gone through since the beginning of this journey. It has been fourteen months since Christopher’s diagnosis. It is a good thing to say that it has been a quiet few months! Busy yet uneventful.

November  4, Christopher had his second appointment with Dr. Bottoms, in Asheville, N.C. His grandparents were able to go visit for a weekend and take him for his appointment. Scheduled was blood work for counts, a Vincristine push, and a Lumbar Puncture. It would be the first time this doctor had done an LP on Christopher. Not knowing how it would go, Christopher decided to have the grandparents stay in the waiting room. If it was going to hurt, he didn’t want them to have to see that. I am happy to report that it went well! After the procedure Christopher spent 45 minutes on his back and visiting with the GP’s. After leaving the onoclogist’s office, they returned to Johnson City, stopped to fill scripts, then delivered the boy to his dorm. Having my parents there to take the boy to his appointment was great for peace of mind.

The boy arrived home for Thanksgiving looking fantastic! It filled me with happiness to put my arms around him for a hug and feel some muscle, not just skin and bones! His color is great (a friend pointed out “He’s not gray anymore!), his energy level is returning, and his hair is longer than Scott’s. The boy has always had a TON of thick hair. It’s come back in just as thick, a lot darker and his beard is very, very red.

Thanksgiving Day ended up being very non traditional. Rory ended up running a high fever. We whisked him upstairs away from Christopher as soon as we realized he was sick and proceeded to sanitize every inch of the house. My heart dropped with the realization that the boys had spent a lot of time together, in close proximity, before we knew Rory was sick. Living with the knowledge that, while his counts have been great, Christopher’s immune system doesn’t function normally or as strongly as ours does is a heart wrenching way to live as parents.

Thanksgiving dinner was spent a house divided! Scott and Rory ate upstairs, while Christopher and I ate and watched a movie in the living room. Poor Max didn’t know which boy to be with. While we were dealing with keeping our children apart, we were thankful for the knowledge that if Christopher were to catch anything from Rory, he was home with his family, main doctor and hospital.

Christopher, so far, is fine and virus free. We spoke to Rory’s pediatrician as well as Dr. Kothari and both agreed that we keep the boys apart until the rash Rory had, as a result of the high fever, was gone. This seems to have worked!

The boy stayed home the week following Thanksgiving for another week of Nelarabine. To say the staff was excited to see Christopher was an understatement. What a homecoming!! We really felt the love! Hugs all around, people coming out of offices to see him, nurses asking to have him for a patient….it was really great. A few people had to do double takes when they saw him as they’d never seen him with hair before.

When you arrive at the hospital, first thing you do is stop at the desk in the lobby. You’re given a sticker designating where you’re going in the hospital. From there you head upstairs to the clinic. Entering the clinic, you check in, give insurance cards if it’s a new month, receive your patient sticker, then wait for your name to be called. This gave us a chance to visit and catch up with the girls at the front desk.

Christopher’s name was called and we then went to have his vitals checked, along with height and weight. At this point, Dr Kothari was standing nearby, telling us about his beard growing adventures. Let’s just say, his boss asked him if he was planning to go through any airports in the near future because if so, he could plan on being asked a few questions 😉

We proceed to an exam room where we spend the next 45 minutes visiting with Dr. Kothari. Our friend Karen, one of the clinical nursing directors, also came back to visit. It was a great visit with lots of laughing. You can tell this is a staff that respects and enjoys each other. A quick exam, a few questions, and we were sent to the nurse visit. The nurses are the ones that access, draw labs, and administer chemo.

I was really curious about the boys ANC, knowing he’d been around Rory. I was relieved that it was above 2,000. That number was higher than it had been in months and meant that he literally had a fighting chance against the virus Rory had.

We had a few nurses tell is that they were fighting over who got to have Christopher as their patient the week he was there. I’m sure having a quiet, compliant, sweet, and handsome (I’m allowed to say that, I’m the mom) patient is a welcome change over sad, scared, crying little ones. The nurses are really wonderful when dealing with the little patients and helping them overcome their fears of being accessed. I know these nurses love their job. It must be nice though, to know one of your patients is laid back and easy going! As a mother it’s nice to know that your child is a favorite patient!

Nelarbine is the study drug Christopher receives as part of the clinical trial in which he is taking part. He seemed to tolerate it as well as he did in September. Still, it is hard to tell if it is the Nelarabine that exhausts him, the lack of sleep from a long weekend of writing a paper on minimal sleep prior to coming home, or both.

We are given discharge papers every time we are at clinic. I noticed today that the side effects for Nelarbine are “diarrhea, constipation, lower blood counts, fever, swelling, nausea/vomiting, change in ability to think clearly, dizziness, drowsiness, blurred vision.” I wonder if Christopher is aware of the “change in ability to think clearly” as he studies for finals??

Scott and Christopher left for Tennessee on Saturday morning. Why, knowing the boy will be home the following weekend, does my heart hurt just watching them pull out of the driveway? Scott said it well. Every time we return the boy back to Milligan we are “leaving him” rather than “taking him.” I never realized I was a control freak until my child was diagnosed. For ten months I was able to control practically everything he did, where he went, who he was with, even what he touched. Now we are leaving him to fend for himself. No Mary Jo two houses down! Will he remember to wash his hands after he touches a door knob? Will people stay away from him when they’re sick? Is he remembering to take all his meds? Surely he’ll never share drinks with anyone???  Let me tell you, this is a real struggle for me! God really has His work cut out dealing with me.

I am thankful for Christopher in so many ways. I am humbled by the man he has become on this journey. I have watched him speak with respect and kindness to the nurses even when he feels awful. He has shown concern for others and has been mindful to not let this diagnosis become the “Christopher Show” for lack of a better description. He does not want to draw attention to himself. He has always said that while he may have cancer, there are so many who are much worse off than himself. He is not letting cancer become who he is. He is a man seeking God’s will for his life and trying to figure out how this illness will help him accomplish God’s purpose.

I am also thankful that the boy indulges me. He keeps the eye rolling to a minimum when I open a door so he doesn’t have to touch the handle. He obediently accepts hand sanitizer after touching a menu. He allows kisses on his forehead for fever checks. He wraps me in his arms and says “I love you, Mom.” And for that, I am most thankful.

To end this blog update, I ask for prayer for Christopher during this week of finals. We all know that sleep is evasive at best and minimal on any given night during finals. All nighters are common. This is fine for a normal, healthy person with a good immune system. Please pray that he gets good rest and that his body has the strength and energy to get through the week. Also, prayers for safe travel home for Christmas are always appreciated!

Pressing On

We are surviving! After the initial taking the boy back to school, getting housing issues resolved, meeting of the new doctor, saying goodbye and returning home craziness, life has settled into a nice routine for everyone involved.

Saying goodbye at Milligan was made a little easier knowing I’d be back to get Christopher in less than three weeks.

Rory and I headed down to Tennessee on Friday, September 6. We were supposed to leave on Thursday, September 5, drive to Athens, Tennessee to spend the night with Lea Ann and family. The next day Lea Ann, her son Zane, Rory, and I were to carpool to her parents, Tom and Barbara Barkes, to spend the weekend before returning to St Louis with Christopher.

I picked Rory up from school, we hit a drive thru for lunch, then started out of town. We weren’t a mile out when Rory and I looked at each other and said “What was that???” We shrugged our shoulder and drove on. It became apparent very soon, that there was something seriously wrong with the Jeep. Like any normal wife would do, I called Scott and said “The car is acting weird.” I’m very car savvy like that. We turned around and drove to the shop where Scott works. By then, the car would barely shift. Scott drove the Jeep and I followed him, in the other car, to the gas station and hoped for the best.

Shortly after Rory and I got home, we called Christopher and Lea Ann and explained we wouldn’t be in until Friday. My mother called right after this happened and I told her what was going on. It doesn’t matter how old you are, your parents always want to take care of you. It’s the best feeling ever. Mom and Gene rented a van for us to ride in comfort and style to get the boy. It was fun driving a new car and seeing how the ‘other half’ lives!

The only problem with driving back to St Louis in a new car equipped with a DVD player and comfortable seats that recline, is that my passengers were terrible company. They sat in back, talked, watched movies or slept the entire time. That said, my heart was full having my two babies with me.

A side note, it is a really odd feeling to be so excited to go get a child to bring him home for chemo. I don’t know if you can fully understand that. I hope you never have to.

Christopher has three cycles that involve Nelarabine during the first nine months of Maintenance. He had never had Nelarabine without being followed by the drug ARAC. We didn’t know how he’d feel after this drug and no way to know if it did indeed make him feel badly and if so, were the effects masked by the side effects of ARAC. This is why we initially decided to have Christopher come home so soon after the start of school. It would also be the first time he’d gone four weeks without being seen at clinic. We wanted Dr. Kothari to see him and decide how Christopher was doing during that first month of maintenance.

Nelarabine is given 5 consecutive days and the IV drip lasts an hour.

We arrived at the clinic fashionably late. The ladies at the front desk were excited to see Christopher. They said “Dr. Kothari has been looking for you!” We apologized for being late to which they replied “Oh, he’s not upset, he’s bored and wanted to hang out with Christopher.”

We were called back to get vitals and we were greeted as if we’d been gone for years. Everyone was so sweet and genuinely glad to see the boy. His main nurse, Carolyn, told us “I was scheduled to be on phones today but I asked to be on the floor today since I knew Christopher was here this week.”

The visit began with Dr. Kothari. His first words to us were “I’ve got good news and bad news.” Won’t lie, I freaked for a moment until he continued “Good news for you Mom but probably bad news for you Christopher. According to the rules of the study, you have to come to St Louis for Nelarabine and you have two more rounds of it. Sorry, you’ll have to leave school for those weeks but I’m sure your Mom is totally fine with that.” Uhhhhhh, yea!!!

The boy was accessed. For some unknown reason this time the nurse had a hard time. I could tell Christopher was uncomfortable. The more she worked to get him accessed properly, the more pain he was in. He had not had this much trouble being accessed since the first time being accessed after his port placement surgery. It was hard to watch, though, I’m sure, even harder being on the receiving end of the needle. A second nurse was able to set it right and all was well. Labs were drawn and the wait for chemo to be delivered to the clinic began.

The pharmacy will not mix Nelarabine until we are on campus due to the fact that it is a study drug and very expensive. Mondays are always busy and this day was no different. I think it took close to two hours to get the medicine.

The lab results were fine but Christopher’s hemoglobin level was surprisingly low. By Friday he decided it would be a good thing to get a unit of blood just to give him that little extra boost, especially after having a week of chemo.

Christopher slept a lot while he was home. I’m sure it was a combination of being exhausted from transitioning back to life at Milligan as well as receiving chemotherapy all week. One of my favorite parts of the week was the fact that Christopher was able to attend one of Rory’s cross country meets. It was a great week of being together as a family, including having Luke with us a few nights.

Christopher will be home for fall break in two days. I am beyond excited. Texting, phone calls, and Skype are wonderful tools but nothing compared to wrapping your arms around the child you love.

Today is Monday, October 7, 2013 and marked a mile stone of sorts. The boy had his first appointment with his new Oncologist in Asheville, NC. He was in good hands. Tom Barkes willingly took on the role of Christopher’s family today. How incredibly blessed we are to have Tom and Barbara step up and take our place while Christopher is in Tennessee.

Today involved all the paperwork that is involved with meeting a new doctor. Accessing went well and labs were drawn. Treatment today was a Vincristine push. Christopher told me he had been feeling nauseous and tired lately and was curious to know if he’d need blood. He didn’t. This is good and kind of disappointing at the same time as a unit of blood gives a nice little boost. He also got his flu shot. He continues with the daily oral chemo.

Christopher was most excited to see he had gained weight! He has been SO skinny from all the chemo so not only does the weight gain indicate his appetite is returning, it’s an indication of muscle gain, which means he is feeling well enough to resume a semi normal life! As you can imagine, this is a pretty big deal. He’s been practicing with the volleyball team. His strength is slowly returning though there are still many things he can’t do physically, such as walking lunges.

Rory has been missing Christopher. As the proud owner of a hand me down cell phone, Rory has been calling and texting Christopher. One day Max and I walked to the bus stop to meet Rory. Rory got off the bus, walked over to me and said, slightly disgruntled, “Well, I guess Christopher is feeling ok.” When I asked why he said it like that and he replied “I tried calling Christopher to talk and he was on his way to work out and that he’d have to call me back later ‘cause he didn’t have time to talk to me.” Rory will tell you he wasn’t upset and that he was happy his brother was feeling good enough to workout because he doesn’t want you to think he’s mad or hurt. Truth be told, he’s missing his brother.

We are counting the hours until we are together again, if only for a long weekend. I ask for your continued prayers for Christopher’s health and safety as he travels, but also as cold and flu season is almost upon us. (If you’re in Tennessee and feel the need to disinfect campus for me, please, feel free! )

Christopher is feeling better and able to be back at school, but don’t forget, his fight is still very real.  May God be glorified through this journey.

Maintenance and Milligan

Today’s blog post brought to you from the book of Job…….

Job 38:1 “Then the Lord answered Job out of the whirlwind……”

God is finally breaking His silence and speaking to Job directly. This part of the verse is the introduction to his reply, not the reply itself. Or is it?

Today is Sunday, September 1, 2013. I have some updates to share. I have not had the mental or emotional energy to write and took some much needed down time.

To begin, Christopher is doing well!! So well in fact, that he is back at Milligan! He is happy! You can see it in his smile, hear it in his voice, notice it in his body language. This had been a long time coming. He has worked so hard to make it back to where he feels God has called him.

Christopher made counts and was able to begin Maintenance on Monday, August 12. Maintenance began with a lumbar puncture, a Vincristine push, and the start of the daily oral chemo. Five days of prednisone also kicked off the phase.

As of August 12, we were not sure Christopher would be ready to return to Milligan.

There was quite a bit of confusion and stress regarding Christopher’s housing situation. Dealing with these housing issues really affected Christopher and was causing his recovery from the last phase of chemo to go slower than anticipated. He was still exhausted from the last hard round of chemo, the stress caused him to feel nauseous, the nausea caused him not to eat, the lack of eating contributed to his lack of energy, etc. It was a vicious cycle. Christopher is not one prone to give in to stress. He faces each situation calmly, thoughtfully, and rationally. No matter how mature you are or how well you handle stress, stress is still stress.

A few uncomfortable conversations took place. A great deal of praying took place. Accepting God saying ‘this is not My plan for you’ is a hard pill to swallow when in our humanness, our plan seems perfectly logical.

I know, and I believe with all my heart, that God’s way is better than my way, that His way is the perfect way. I really, really believe this.  “I know that Thou can do all things, and that no purpose of Thine can be thwarted.” (Job 42:2) That said, it doesn’t make it easy to go through it. We were exhausted, emotional, and maybe a little angry.

Tuesday, August 13, I came home to eat lunch. Christopher and Rory were hanging out in the living room. I saw a huge change in the boy. He was smiling, laughing, and generally back to his old self. I was amazed. It was the most Christopher seemed like himself in months, no exaggeration.

Wednesday, August 14 Scott, Christopher and I decided we would leave for Milligan on Saturday, August 17. We kicked it into high gear! Packing wasn’t too big of a deal as the boy hadn’t unpacked much more than his clothes.

Friday, August 16 was a big day for Christopher. It had been one of his goals since the beginning of the summer, to go squirrel hunting. Gross, I know. He felt well enough to spend the day hunting in southern Illinois with a good friend. I honestly don’t know who had a better day, Paul or Christopher.  The guys got home around 9pm. The boy went straight to the shower while Paul cooked up the squirrel. (In my kitchen. Dead squirrel in my kitchen. I probably need to sell my house now.)

Long story short……the guys ended up with some tick bites and covered in either mites or seed ticks.  After a very long night, three showers later, and what resulted in Christopher shaving his legs, the bug issue was resolved enough for the boy to get some sleep.

Saturday morning I went to Christopher’s room. I asked him if he felt comfortable leaving for Tennessee not knowing what the tick bite might result in. It was Christopher’s decision to wait 24 hours to see if anything would develop. We agreed that if anything were to happen as a result, we wanted to be near our doctor and hospital. I called the on call Oncologist and discussed what had happened. She agreed that our decision to wait 24 hours was very wise. We were told what signs and symptoms to watch for and given permission to head to Tennessee on Sunday.

Sunday morning we packed the car and headed south! Rory stayed home with Luke because school had just begun the week before and cross country practice was in full swing. We arrived at the Barkes’ home late Sunday night. After ten hours in the car, Christopher was really hurting. A delicious dinner was waiting for us and we were spoiled rotten by our sweet hosts. Christopher took some pain meds, ate some dinner, and then went to bed. He decided to check his temperature just to be sure that his pain was from sitting in the car all day, and nothing else. No fever! A good night sleep plus the pain meds found him much improved the next morning.

The excitement of heading to campus was dampened by the thought of meeting  with financial aid as well as having to resolve the housing issue. We got the boy registered, made it through the financial aid meeting, and then met some of Christopher’s friends to finally say hello and give hugs all around. Christopher was looking tired at this point and we didn’t have a meeting regarding housing yet, so we returned to the Barkes’ to let him sleep for a while. Finally, a few phone calls were made and we set a meeting for the next morning at 8:30am with the Dean of Students and the Housing Director.

Scott has worked in the running retail world for many years. He is an expert in his field. He put it well when he said “Sometimes the true worth of company is not just measured in having a great product but in how they handle righting a wrong.” Milligan College is no exception to this rule.

We made it to our meeting Tuesday morning, not sure what to expect. Christopher had asked that we allow him to do all the talking. He wanted to explain all our reasons for the request we had given the school regarding housing. There was a great deal of miscommunication and misunderstanding.

Christopher is the first case Milligan has of a cancer patient, still in treatment, returning to school. As we began our meeting, the first thing I said was that we felt we had a responsibility to educate and help Milligan learn to navigate this new road. I apologized for being emotional during some of my phone calls. Immediately the Dean of Students said that there was no need to apologize and that Christopher was no ordinary situation. Still, I don’t want to be known as “that person,” you know, the mom who makes the administration cringe when they see her approach.

Christopher was prepared to explain the reasons for our housing request from the very beginning. It is a long and semi complicated story that does not need to be explained here. We were pleasantly and almost overwhelmingly surprised when the Dean of Students offered Christopher a few different housing options.

As I said earlier, we had prayed for months about this housing situation. When it became apparent that what we asked for was not going to happen, we changed our prayer. With the best attitude I could muster I began to pray that God would make the housing situation better than we could imagine, that whatever He wanted for Christopher would be even better than we could have asked.

I have a niece who just turned two. I love this little girl with all my heart.  She has the ability to capture my heart with one look, one smile, one belly laugh. One of my favorite things about her is when she decides to pout. She throws that bottom lip way out and wraps her arms across her chest in the most angry way she knows how. If you stop paying attention to her for just a minute, she’ll glance over at you to see if you’re watching. If you’re not, she’ll sigh again real loud and cross her arms across her chest in the most exaggerated way, all while peaking up from under her eyebrows. It’s really one of the funniest things I’ve ever seen. In her two year old mind, she’s really angry. She’s been unjustly treated and she is UNHAPPY. This little girl has no reservations about letting you know it.

I am very much like Meredith when I am unhappy.  I groan and complain and want God to know how mad I am, how I feel like everyone is against me. If God is disciplining me, I don’t like it. I grumble and complain (I know, I know, ‘do all things without grumbling or complaining.’)

I won’t lie. I was doing some pretty good pouting of my own. I was so tired of having to do things I didn’t want to do anymore. But despite my pouting, God heard my prayer. He softened my heart and began to show me, for the millionth time, that His ways are not my ways, and His thoughts are not my thoughts, that His way is THE way.

I know this, I believe this, I trust this. So why then is it so hard to keep the right attitude, to hold onto joy, to feel secure in trusting God when we face trials? I feel like the very worst Christian ever.  God continues to guide me, loving me, allowing me to struggle until I seek Him first. This is hard, so very hard. I will walk through the fire, if this is what he requires of me.

Yea, yea, yea Lindsay, ok, now get to the part about how Christopher’s housing issue is resolved….

God did indeed have better plans for Christopher. Christopher was given a single room, in his old dorm, on the first floor. Yay! No extra stairs to climb! His RA is one of his best friends, someone Scott and I love, who has been to our home and shown us his love and concern for our child. Webb Hall (the dorm in which Scott lived) is at the end, but also the middle of campus. If you remember, Milligan is a very hilly campus. We were very concerned about how Christopher would adapt to all the walking when he returned to campus. Webb is centrally located between the cafeteria and where the majority of his classes are located.

After our meeting the first thing we did was to meet with the school nurse. We updated her on Christopher’s story, gave her all the necessary information, and we felt good in knowing she was familiar with what he was going through.

Next, we headed to the dorm and finally unloaded the jeep. We jumped back in the car, drove to Target, and filled the jeep up once again. We drove back to campus, unloaded the jeep for the second time. I told Christopher early on that I planned to duct tape a big dispenser of Germ-X outside his dorm room. To make this less obnoxious, I used Batman duct tape. (Sadly, this only stayed in place about 24 hours.) We heard some of the guys walking down the hall.  I heard them say “Where’s Shaw’s room??”  They knew their answer when they saw the Germ-X professionally hung outside his room. I disinfected every possible surface to the point that one of Christopher’s friends remarked “You can smell that this room has been deep cleaned.”

That afternoon at 4:30pm, we had an appointment to meet Christopher’s medical team in Asheville, North Carolina. It is less than an hours drive. We arrived about 45 minutes early. The facility is gorgeous, almost like a hotel! The nurse director met with us, gave us a tour of the office, and spent a lot of time getting to know us. We were very impressed and feel confident Christopher will be in good hands. We ate a late lunch in Asheville then returned the boy to campus. Scott and I returned to spend the rest of the evening with Tom and Barbara, filling them in on the events of the day. It was the first time we felt relaxed since we’d arrived.

Wednesday morning, we said our goodbyes to Tom and Barbara, and headed back to Milligan to have breakfast with Christopher. We had about an hour before he had to be at his first class. I couldn’t eat. It was so hard to believe that we were sitting in the cafeteria getting ready to begin his semester! The time came to drive him to class and say goodbye. So, so hard! I could have hugged that child forever. Once again, I placed Christopher back into the arms of his God, to take care of him, watch over him, and love him. There is no greater peace in doing so!

 

First day of school picture!

 

 

We watched him hug a friend he hadn’t seen yet, and saw them walk up the stairs to class. And like the first day of kindergarten, Christopher didn’t look back. He didn’t need to. He knows his parents will always love him, fight for him, and be there for him, even when he doesn’t turn to look for them.

 

God will answer us out of the whirlwind. Every time.

 

“Many are the afflictions of the righteous; But the Lord delivers him out of them all.” Psalm 34:19

Waiting For Maintenance

 

I’m not sure where this blog is going tonight. My thoughts are going in a thousand different directions. 

 

Christopher is finished with Delayed Intensification but has not met counts to begin Maintenance.  ARAC, true to form, has left his immune system non existent. We have a bubble boy. He’s spent the last three weeks in the house. Literally. Mostly because his immune system is dangerously low but also because he feels terrible. He’s not had much appetite and a few weekends ago, he was very close to being seriously dehydrated. 

 

With each round of ARAC, he has orders for home IV fluids. When Christopher is dehydrated he becomes light headed, very weak, his eyes get sunken and he has dark circles under his eyes.  Add to that the nausea and general bleh feeling from chemo and it’s like a party you don’t ever want to be invited to. 

 

On Sunday, July 28 he knew he needed more fluids. He’d finished 7 nights of fluids on the Friday before.  We called Mary Jo to come take a look at him for peace of mind. She took vitals, checked for dehydration, and confirmed what we expected. He needed blood and fluids. Once again, his Orthostatic Hypotension numbers would drop when he stood up. If you remember, the last time Christopher had this issue, we ended up with an ambulance ride to the ER and an over night admittance. 

 

A call to the on call Oncologist was placed. When the doctor called, I explained what was going on and asked if he’d be able to order fluids. When I told him Mary Jo, our personal nurse was here to check on Christopher, he asked to speak with her. Lots of medical terms were used. Christopher and I shook our heads in agreement. The doctor asked to speak with me when they were done being all medical. He told me that the problem with home fluids is they have to be ordered during the week. If he wasn’t able to arrange for a delivery, then we’d need to come to the ER for fluids. Thankfully, Dr. Alex was able arrange a delivery. We all breathed a sigh of relief.  

 

Home health care called to tell us that when the fluids arrived, to call the nurse and she’d come access his port. Christopher was okay on his own so I ran to the grocery store.  While I was there, Christopher called to tell me the nurse had called to say she was on her way. He didn’t know if she was bringing the fluids (they are usually delivered by a courier service from the hospital). It made sense that she come during the day to access him and we could hook him up to fluids that evening. 

 

While we were talking about the nurse visit, the following conversation took place: 

Christopher  “Where’s the cream?”  

Me  “It’s on the top shelf of the fridge, in a brown container.” 

 My reply was met with dead silence.  

Me  “Are you making coffee?”  

Christopher  “I mean the numbing cream for my port.” 

 

You say cream, I think coffee. FYI…the numbing cream was NOT in the fridge, it was in my purse, along with the Tegaderm (the bandage you put over the cream). Needless to say, I left the store and went home. 

 

The nurse arrived with a box of fluids! Woo Hoo! The doctor ordered a Gravity Drip of one liter of fluids. This is just what it sounds. The bag of fluids were hung by the ceiling fan with care, in hopes that the fluids soon would be there. Or something like that…… 

 

A gravity drip allows the fluids to enter the body as quickly as they will be accepted, to hydrate quickly verses being sent through the body using a pump that times the fluid rate.The nurse that came had never accessed Christopher before. She accessed him without problems and this is always a good thing, especially when you don’t feel well. 

 The drip lasted about an hour and the boy could feel an improvement.  An order for a 10 hour over night drip was given as well.  

 

(This is a picture of a one inch needle that is placed in his port. It is angled on purpose. The yellow flaps rest on his chest, they are padded with gauze, then covered with tegaderm to keep it in place. There is tubing that attaches from the needle to the IV lines. A port can stay accessed for up to eight days.) 

 

Monday morning the boy woke up feeling better. He did not feel great, but better.  I asked him if he thought he’d be able to walk into the clinic. His reply was “We’ll see.” This answer was disconcerting to me as he’d never answered that way before. 

 

Home health came in the morning to draw labs. We knew he needed blood so I called the clinic and asked if we could bring the labs to the hospital, they agreed.  Patients usually know when they need blood and there was no doubt in anyone’s mind this time. 

 

For the first time, I dropped Christopher off at patient drop off, parked the car, then met him inside. We walked to the outpatient lab together where he sat down again. Then we took the elevator to the clinic. He immediately sat down. 

We made it to the clinic by eleven am. We had to wait for results and two hours later, the boy was hooked up to a unit of platelets. 

 

 

This is what platelets look like! 

 

After the platelets, he received two units of blood. It was a long day but much needed for blood products. Dr. Kothari ordered three more nights of fluids.  

 

Counts are still very, very low. I have been praying to see just a tiny climb in the right direction.  His counts are coming up VERY slowly, but they’re coming up!  ANC must be 750 to begin Maintenance and as of today his ANC was 240. This has tripled since Monday, when his ANC was 63.  I admit, I was disappointed for some reason. I don’t know why. I’ve been praying to see his counts rise. This is exactly what’s happening. God is faithfully answering my prayers. And still, I’m anxious, I’m tired, I’m frustrated. 

 

 

The thing about cancer is, it doesn’t just hand you a “the rest of your life will be stress free because you’ve been through hell and back” card. 

 

One of the things I have really wrestled with on this journey is saying “I hate this.”  I have very strong feelings about cancer and the countless issues it has caused. The effects are far reaching, it permeates every area of your life. I want to yell “It’s not fair” or “WHY??” Maybe the question I need to answer is “Why not?” I don’t like that question as much. This journey has not been without it’s blessings. They have been overwhelming and humbling. There is no doubt that God is present.  This is why I struggle with ‘hating’ cancer. I want to hate it with every fiber of my being and yet, when I know God is in the center of this storm, guiding our steps, ordaining what goes before us, I can’t allow bitterness or hate. This could quite possibly be what makes me an emotional mess. 

 

 When I see my son sick, weak, exhausted, in pain, or discouraged, I’m angry. No parent wants to watch their child to suffer. And then I realize, isn’t this exactly how God felt when His son died on the cross?? Didn’t God’s heart break seeing his son in agony? He could have removed this trial, found an easier way to save mankind, one where His own flesh and blood wouldn’t face excruciating pain. Is this one of the lessons I needed to learn? It weighs heavy on me. I know God can handle my anger, and this helps. 

 

I look at Christopher, a body weak from months of intense chemo, muscles atrophied, a bald head, constantly exhausted, overcoming dehydration, nausea, pain, you name it. What do I see?  Is he discouraged at times? Yes. Frustrated? Certainly. Angry? Maybe. Has he complained? Not once. Does that remind you of another young man, sent to do the will of His Father? 

 

“Father, if you are willing, take this cup from me; yet not my will, but yours be done.” Luke 22:42

We’re sitting in the clinic on the last day of Delayed Intensification.  Today brought a Vincristine push and an IV PEG. The boy is finished with ARAC (can I get a Woo Hoo??).  ARAC is the drug that really wears on Christopher. It makes him nauseous, leads to dehydration, adds to his ever present exhaustion, and drops his counts. Each time he gets ARAC, it takes his counts longer to climb back to normal. This was the third round of ARAC. I will not miss you ARAC, but thank you for helping save my child’s life.

 

Today has brought a new low. His ANC count is officially zero and his platelet level is three.  Zero and three. I know 0-3 is bad in baseball. Pretty sure it’s even worse for blood work. Ugh.

 

To make counts to begin Maintenance, Christopher’s ANC must be at least 750 and platelets have to be at least 75. Yup, he has some work to do.

 

This day in clinic has been one of the hardest for me yet. For some reason, I wasn’t expecting to have such a heavy heart. I anticipated this last day of this phase to be sort of a celebration. The boy is done with the intense stuff. No more heavy hitters. It all gets easier from here, the “let’s celebrate” kind of attitude.

 

Usually being at the clinic is cathartic for me in that ‘Stockholm Syndrome” kinda way. For what it is, I don’t mind being there. The staff is outstanding, the care exceptional, and the over all feel is positive.

 

We’ve spent a lot of time at the clinic over the last nine months. New friendships have been made, relationships fostered, stories shared. The only problem is, not every chapter in every book is a good chapter. As we talked with doctors and nurses yesterday about entering maintenance, we sat near a new friend who relapsed before making it to maintenance.  Another patient tells of a fungal infection she’s battling. This is hard stuff to hear after learning that my son’s counts have seriously dropped.

 

At this point, the plan is for Christopher to return to Milligan in the fall. We are SO close to maintenance and getting Christopher back to school.

 

We have prayed about this. The thought of his return to school, to resuming part of a normal life again, has gotten the boy through some of his hardest days. Two of the major obstacles to overcome for his return have been answered only by the grace of God.  Cancer has supplied more hurdles than we could have ever imagined. And yet I seem surprised when God provides. Sheesh, you’d think I’d learn by now.  “I believe, help my unbelief.”

 

So……here’s what you can do right now, please? Pray that the boy will stay fever free, that he will not be sick, that he will avoid infection, that we will not need a hospital stay. Pray that his counts will climb quickly (even though his history has shown them to climb slowly).

 

Christopher has had a LOT of chemo in the last month.  It would be AMAZING if he actually made pre chemo counts when they draw labs on Friday, July 26. That said, if he doesn’t, that’s okay. His body has been through the ringer and will need time to recover. Dr. Kothari, the nurses at clinic, the home health care nurses, etc, have told him that he will be exhausted when he returns to school. Chemo has left him weak. Milligan is all hills to anywhere you go on campus! We are concerned with how he will handle this transition physically. Mentally and emotionally, he is ready to be back!!!

 

When Christopher makes counts, what’s the plan? He begins the last phase of treatment, Maintenance. How long does this phase last? This phase will last through March 2015. We have always heard that maintenance is the easy phase, it’s a breeze, that it’s a piece of cake compared to all the other phases. While this may be true, I think Christopher and I also realized on a different level today that he will still be getting therapy until 2015. There is still a long way to run in this race.

 

What does Maintenance involve? Christopher will take an oral chemo pill every day.  In addition, each Monday he will take an oral Methotrexate (this is the drug he receives through his LP. After they draw spinal fluid, they replace it with the same exact amount of Methotrexate). If you remember, the boy also received Methotrexate  through IV during Interim Maintenance. Christopher seems to be sensitive to this drug in that it drops his counts and causes them to recover slowly.

 

Once a month, he will need to visit clinic for an IV push of Vincristine and blood work. Blood work once a month compared to once or twice a week will be a big adjustment. We like the security of knowing his counts each week. Monthly counts will continue to determine if his dosage of meds needs to be adjusted (for weight gain/loss and or side effects).

 

Every three months he will return to Children’s in St Louis for an LP.

 

There are six cycles that make up Maintenance. We will have a visit from our old friend, Nelarabine (the study drug) at the end of the first three cycles.  After the first three cycles, there is no more study drug and it’s the oral drugs, once a month clinic visit for Vincristine, and an LP every three months.

 

Dr. Kothari is in the process of setting Christopher up with an Oncologist in Asheville, North Carolina. The hospital in Johnson City follows a different treatment protocol. There is a teaching hospital in Asheville that Dr. Kothari and Dr. Hiyashi are familiar with so that’s where Christopher will go. Unless we become independently wealthy and can get the boy home once a month for his clinic visit, Dr. Kothari is very comfortable with this plan.

 

A quick side note….a friend of mine who has a daughter with Leukemia, also being treated at St Louis Children’s, wanted to do something to help other parents who find themselves suddenly at the hospital with a newly diagnosed child. It’s so exciting to see others use their cancer journey to help others. I’ve joined Trisha in the mission she began called “Wish I Had’ bags. The idea is to have a bag that contains toiletries for the first few days of your stay with your child. Children’s is great and has everything your child needs. The hospital has a fantastic Ronald McDonald family room that can meet the families needs as well. The only problem is that it is staffed by volunteers so the hours it is open depends on volunteers. These ‘Wish I Had” bags will alleviate the need to go looking for a toothbrush when you find your self suddenly admitted with your child.

 

Our church chose to make the “Wish I Had’ bags the mission for our week of VBS. It’s teaching our children the value of helping those in our community, not just foreign missions! We had a terrific response. Wednesday evening, we brought in a guest speaker, Dr. Kothari! He was a big hit. As I was talking to Dr. Kothari about Christopher’s low counts and how he probably shouldn’t be at church around all those little kids his response was “If I have to be there, so does Christopher. AND he’s standing up front with me.”)

 

The road we are traveling right now is a concerning time as Christopher waits to make counts to begin Maintenance. We ask for your continued prayers. There will be new challenges to face and we pray for courage, strength, peace, and joy each step of the way.

 

Keep steady my steps according to your promise, and let no iniquity get dominion over me. Psalm 119:133