Maintenance and Milligan

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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!

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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

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Waiting For Maintenance

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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…… 

 

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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.  

 

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(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. 

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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

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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.Image 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

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Are We There Yet?

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June 25, 2013

 

I remember the first time we saw Christopher’s cancer road map. A ‘road map’ is what they call a patients individual treatment plan. It was intimidating, scary, confusing, and overwhelming. There are five phases to Christopher’s map. Induction, Consolidation, Interim Maintenance, Delayed Intensification, and Maintenance.

 

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 (Road maps! Three phases completed!!)

 

Currently, Christopher is in the middle of Delayed Intensification. He began the last cycle of the study drug, Nelarabine, this week. We visit the clinic every day this week for chemo.

 

Next Monday, July 1, will begin with an LP, an IV drug, Cytoxin, and a visit from our old friend ARAC. The boy will receive ARAC Monday through Thursday of that week and as well as the following week (the week of July 8).  There’s another clinic visit July 15 and then a week or two break.

 

What does all this mean? It means we’re getting there my friends!! Where are we getting?? To Maintenance!!! They say the Maintenance Phase is a piece of cake compared to the other four treatment phases.  Know what?? I REALLY like cake!!

 

The beginning of Delayed Intensification is much like the Induction phase. He’s getting many of the same drugs, just a stronger version. He’s tolerated them pretty well though there have been side effects.

 

For a while, Christopher was really beginning to feel like his old self. His energy returned, his appetite was much improved, he was able to begin a workout routine and walking schedule.  We even hiked the local big woods!

 

 

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(What you can’t tell from this picture is that these two tree’s hung neatly over a 30 foot drop)

 

 

Rory and I went to Ohio for a visit with my family. Christopher had a break from chemo and since he was feeling well, I felt okay leaving him for a long weekend.

 

You know the expression “things can turn on a dime?” Yea…well……

 

I left the boy feeling well and happy! I returned to the boy with a raspy voice, losing hair again, in pain, and having trouble walking.

 

Christopher called me Monday morning to say his back was hurting him. Home health was scheduled to draw labs that morning.  He talked to his nurse and told her how he was feeling. When he hadn’t heard his counts by 4:30pm (that’s when the clinic stops taking calls) I suggested they call the after hours number to get results and to discuss the pain he was experiencing.  By early afternoon the boy was in enough discomfort that he called Mary Jo, our personal nurse, and asked her to come by that evening.

 

Can I just tell you that shopping at IKEA is just not as fun when your child, that’s six hours away, is in a great deal of pain?? I know, you feel so sorry for me little miss “you’re not the one fighting cancer so just get over it.” I talked with Mary Jo while we were at IKEA and she calmed my fears. Everyone needs a Mary Jo.

 

Scott and Christopher called Dr. Kothari to get results and touch base with how Christopher was feeling. Counts were good!

 

Christopher had a very rough, painful night. By 6:00am he woke Scott up and they called Dr. Kothari again. Dr. Kothari had the clinic call them as soon as they opened to ask when they wanted to be seen. They were at the office by 9:30am.

 

By this time, the boy was covering his legs and back with ice and taking Oxycodone. The oxy didn’t seem to be touching the pain yet. Walking seemed to help relieve some pain. Sciatic pain was thought to be the culprit. He was sent for x-rays for possible fractures. Those came back fine. He was given a script for Gabapentin, a nerve pain medication that many cancer patients take. Ice, Oxy and Gabapentin seemed to offer relief over the next few days. The boy finally found ways to get comfortable for sleeping.

 

Over the weekend, we ran out of Oxycodone. Oxy is a controlled substance and requires a prescription.  A doctor can’t just call a prescription for narcotics in to your pharmacy. The boy had four pills left Saturday and kept them until Sunday evening so he could finally get comfortable enough to sleep and be able to ride to clinic without too much pain. To say he toughed it out is putting it mildly.  Physical pain is emotionally draining. It was a rough weekend.

 

Even the dog could tell his boy wasn’t feeling well.  I don’t think Max left Christopher’s side all week.

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Monday morning the boy woke up and I couldn’t believe the difference in him from the night before. He felt better, he was able to move around okay, and he was hungry!!!

 

We had a scheduled visit with Dr. Kothari. I’ve said it before and I’ll say it again, we love him!! We spent about 30 minutes talking with him. A lot of questions asked and answered from both parties.

 

The pain is mostly gone from his back. It is primarily in his groin and knee in his left leg. Because Christopher is still experiencing discomfort, even though he’s able to control it with ice and pain meds, an MRI has been scheduled for Thursday, June 27.

 

Chemo and steroids do a number on your body. An obvious statement until it directly affects you. As Dr. Kothari says “chemo pisses off your nerve endings.” Thus, some of the pain the boy is experiencing.

 

Chemo does a number to your bones and muscles. Christopher’s bones have been hit hard from therapy. The boy has very little muscle mass left in his legs. The concern now is a spinal fracture and/or avascular necrosis. The MRI will give us a better idea of what treatment is needed.

 

While we are making tremendous progress with his therapy, there are still issues to deal with.

 

We are busy applying for scholarships and seeking financial aid to help get Christopher back to school. Please pray! It would break my heart into a million pieces if Christopher is not able to get back to Milligan this fall because of tuition costs!!  Many times I just want to yell because of all the little issues that cancer causes. It permeates all areas of life. Yet God is bigger than cancer, he is bigger than my worries and fears. It is God alone who is in control.

 

Seek first the kingdom of Heaven. We get wrapped up in our fears. Seek first His kingdom. Our pain overwhelms us. Seek first His kingdom. We allow frustration and anger. Seek first His kingdom.

 

God already knows what we need. Your will be done Father.

Amen.

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What is the cost of cancer?

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What is the cost of cancer? Financially? Physically? Emotionally? Spiritually?

 

Financially? Cancer is a multi-million dollar disease, even with insurance. Here is a small idea of the medical costs involved in this journey so far: airlift from Johnson City Medical Center to St Louis Children’s Hospital -$40,000, the administration fee per unit of blood $750, a single unit of IV fluids for home $100, nausea meds approximately $400 every three weeks, numbing cream for port access $45, doctors fee’s, ambulance ride fee, gas to and from the clinic, time off work for Scott, etc. Remember, this is a two and a half year journey!

 

So many people have been so incredibly generous to our family. I have been remiss about writing thank you notes. Please know that each and every gift is so greatly appreciated. We are truly grateful. A simple ‘thank you’ feels insufficient. How do we show you our gratitude? I’m still trying to figure this out!

 

Physically? Christopher is very thin. The boy can wrap his hands around his quads and his fingers touch. He has no energy. You know when you don’t feel well and you don’t even have the energy to shower? That’s how the boy feels for months on end. Can you imagine how frustrating that would be?  His appetite is average at best. He will walk to the kitchen to get something to eat and by the time he gets his food, he’s used so much effort to get his food, he doesn’t really have the energy to eat. If Christopher eats two full meals a day, I am pleased.

 

We had a surprise visit for Christopher from some of his closest friends from Milligan. At one point during the visit, Christopher had to take a nap. The guys were sitting around the kitchen table and I asked them “How did you find Christopher? Did he appear how you expected? Is he above or below your expectations?” The one answer that really got to me was “It really made me realize how this cancer has affected him when he had to sit down during a game of volleyball. At school, Christopher would never have done that. He was the first one to the court and the last one to leave after hours of playing.” These days, the most physical activity the boy gets is walking from the parking garage to the clinic.

 

On a fun note, yesterday a friend came to take Christopher to the shooting range. It was a soggy, cold, rainy night. I allowed him to go because said friend is a surgeon. I figured if anything happened, he was in good hands. They went skeet shooting.  Christopher had to stop after three or four rounds because he was exhausted from the effort.

 

Remember the boy that ran a marathon in 85 degree, humid weather then played Ultimate Frisbee the next day? He shot 20 bullets and was exhausted. He is wiped out today. While Christopher’s spirits are high, do no be fooled by what his body has been through these last six months. His therapy is intense.

 

We had a clinic visit yesterday. His platelet count was, again, not high enough to receive Methotrexate. This was the main drug of this phase.  The treatment Christopher is receiving is part of a clinical study. This phase of his treatment allowed for missing counts two times. Now we’ve reached a gray area. The doctor that wrote this protocol is the director of the Children’s Oncology at Children’s Hospital. He is very familiar with our case. He wanted Christopher to get Vincristine yesterday even though he couldn’t get the other drug. Christopher was also supposed to have an LP. When the boy has an LP, they inject Methotrexate into his spinal fluid. Home health care will come Monday morning to draw labs. This will determine if we go to clinic Monday afternoon for an LP and possible IV Methotrexate.

 

Dr Hayashi, the one who wrote this protocol, is firm that this phase will end as scheduled. The missed doses of IV Methotrexate will not be made up. This phase is scheduled to end April 29.  The boy will have approximately a two week break then begin the next phase of treatment called “Delayed Intensification.”

 

Dr. Kothari sat and visited with us for a while yesterday. He looked at Christopher and said “Why are you being so slow??” (in raising his counts of course 😉 ) He explained that while some medicines cause your counts to drop, Methotrexate typically doesn’t drop them as much as Christopher’s have dropped.

 

Christopher has T-cell Lymphoblastic Lymphoma. The therapy that he is receiving is targeting the t-cells in his body that are cancerous and killing them. The chemo is, of course, also killing the healthy t-cells. T-cells in the neutrophils are what help fight a virus. Dr. Kohtari explained that while Christopher’s ANC and white blood cell counts have been okay lately, they are not functioning normally. Therefore, the virus he battled has kept his counts low and prevented him from getting Methotrexate.

 

I’ve mentioned before that before having an LP your platelet count must be 50. Christopher has received platelets before an LP. Why didn’t they just give him platelets this time? Good question! This time it was a matter of his body actually producing the platelets. If his count is already low, and he receives a drug that could potentially lower the count level even more, then you have another problem on your hands! We’d prefer to avoid infections as much as possible.

 

Emotionally? The answer to this question changes moment by moment, day by day. I remember one day a few months back. We had a great visit from a wonderful couple from Edwardsville Neighbors in Need (please, look them up online. A truly remarkable organization and we look forward to partnering with them in the future.) We were overwhelmed, humbled, and actually speechless to see how God was providing above and beyond our wildest expectations through this organization.

 

A few hours later, Christopher wasn’t feeling well. I remember fighting a feeling of anxiety. With chagrin, I realized I was like the Israelites.

 

 In Exodus 14, God is telling the Israelites that it’s ‘Go Time!’ The people start getting scared and complaining. (yup, I relate here). Moses tells them ““Do not be afraid. Stand firm and you will see the deliverance the Lord will bring you today. The Egyptians you see today you will never see again. 14 The Lord will fight for you; you need only to be still.”

 

The Lord will fight for me, I need only be still.

 

29 But the Israelites went through the sea on dry ground, with a wall of water on their right and on their left. 30 That day the Lord saved Israel from the hands of the Egyptians, and Israel saw the Egyptians lying dead on the shore. 31 And when the Israelites saw the mighty hand of the Lord displayed against the Egyptians, the people feared the Lord and put their trust in Him and in Moses his servant.

 

They safely crossed the Red Sea. God was true to His word (and probably wanting to smack some Israelites and say “SEEEEEE??? Toldya.”)

 

Moving along to chapter 16……two chapters later….two chapters!!!

 

 The whole Israelite community set out from Elim and came to the Desert of Sin, which is between Elim and Sinai, on the fifteenth day of the second month after they had come out of Egypt. In the desert the whole community grumbled against Moses and Aaron. The Israelites said to them, “If only we had died by the Lord’s hand in Egypt! There we sat around pots of meat and ate all the food we wanted, but you have brought us out into this desert to starve this entire assembly to death.”

 

These folks had walked through a miracle.  God had protected them.  God provided. He had saved them. Now they’re whining and complaining. Ouch. I’m an Israelite.

 

Spiritually? Growing pains all around. We are being stretched, pulled, molded. We are being spiritually blessed in a way that only comes during trials. A close, personal communion with the God of Heaven and Earth.

 

2 Corinthians 12:9  But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me.

 

The Lord will fight for me, I need only be still. The battle belongs to the Lord, I must only submit.

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There is a Purpose to Our Journey

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“He makes me lie down in green pastures, he leads me beside quiet waters, he restores my soul.”   Psalm 23:2-3a  Rest,refreshment, healing.

“For His name’s sake.”  Psalm 23:3b  There is a purpose to our journey.

We are “walking through a valley”, but we have no fear. God is with us. This does not mean that we don’t have dark days, crabby days, tired days. This is a long road, a hard road. The only way out of a valley is through it, and so we continue to walk.

Christopher is now two thirds through the “hard stuff” according to Dr. Kothari. He is officially in the third phase of his treatment plan. This phase is called “Interim Maintenance.” He will receive a drug called Methotrexate in an IV drip but must make counts for this medicine. He has received this drug before when he has an LP, or as they say in the professional world, through IT (intrathecal /in·tra·the·cal/ (-the´k’l) within a sheath; through the theca of the spinal cord into the subarachnoid space.  Sounds so fun, doesn’t it??)

Before this phase began, we were able to take a trip to Tennessee to visit Milligan. It was a fantastic trip and exactly what Christopher needed.  I was overwhelmed seeing how loved he is at Milligan.

Being the determined person that he is, Christopher had set up meetings on campus to get things in line for next semester.  We spoke with the Director of Student Success and Disability Services, Christopher’s advisor, as well as filling out a re-admission form.

Let me make a shameless plug here……I can NOT say enough about how wonderful the faculty and staff at Milligan have been to our family through this cancer journey. I can’t imagine what our story would be if we did not have the love and support of these terrific, genuine people. Everyone from the president, to the retired athletic director, to support staff are praying for and encouraging us.

I was able to spend some time with one of my best friends from Milligan, along with her family. If you don’t know the Barkes family, I encourage you to run, not walk, to get to know these people!!! As Rory and I sat in their kitchen the night we arrived, I explained to him this was my second family when I was at Milligan. He replied “Who was your first family?”  He’s pretty like that 😉

Who knew that when Scott and I both chose to attend Milligan, nearly 30 years ago, that Milligan would be a huge support system to us during one of the hardest times of our lives? My guess is God knew!!

I’ve talked a lot about the importance of ‘making counts’ when you have cancer. There are four counts that we measure – white blood, platelets, hemoglobin, and ANC. To briefly explain why the ANC is so important (copied from the internet):

Children who receive chemotherapy are at greater risk for infection.  To determine the risk of infection a blood test called a complete blood count with differential (CBC w/diff) may be ordered. Part of this test determines the patient’s absolute neutrophil count or ANC.

A normal ANC is about 3,000-5,000. An ANC below 1,000 means your child is neutropenic and has a greater risk for infection. When the ANC is below 500, there is an even greater risk of developing a serious infection. The longer someone is neutropenic, the greater the risk of infection.

The ANC usually drops 7 to 10 days after receiving certain types of chemotherapy and stays down until the body is able to replace the damaged white blood cells. During the time period of low ANC, you will watch your child for signs of infection and report them. If your child has a low ANC and signs of infection he/she may need to be hospitalized and receive antibiotics to help fight the infection.

Christopher’s blood work, upon returning from our trip, showed an ANC of over 6,000. I had to smile for a few reasons. His ANC had not been this high in a very long time and it gave me some peace considering how much time he spent in public while we were in Tennessee.

A high ANC count also gave us great peace when Christopher got a fever, Friday, March 29. This was four days after we’d gotten home from Milligan.

This was his first fever since being diagnosed. His doctor warned me from the very beginning that Christopher would, at some point, get a fever. I still hear Dr. Kothari saying that in the course of two years, even normal, healthy people were bound to get a fever, and to just accept that fact that at some point, the boy would get a fever.

I had called the clinic earlier in the day to let them know that Christopher seemed to be working on a fever. He’d had chemo the day before and his ANC was still high. He had no other symptoms other than a headache.

We called his doctor around 6:45pm to let him know we were headed to the ER with the boy. We arrived at Children’s and got right into the triage area where they wanted to take vitals and weigh the patient. (There are some perks to being a cancer patient. They don’t mess around and keep you waiting around all those other sick people, they get you right in!) When they asked him if he could stand up to get on the scale I could tell it wasn’t going to happen. I thought the boy was either going to pass out or throw up from the exertion. He chose the latter. The boy has only gotten sick four times in the five months he’s been diagnosed. Each time it’s happened has been when he has physically exerted himself when dehydrated.

After Christopher got settled in an ER room, they accessed his port. Lots and lots of blood drawn as well as a few other tests to determine what might be the cause of the fever.  The waiting game commenced. Lots and lots of waiting!! Test for flu was negative.  His ANC had actually gone up from the day before! It was around 6500!!

Due to his high ANC, he was given an antibiotic IV drip and we were then allowed to go home. Before we left, one of the doctors came in to check on us. He ordered some Tylenol to alleviate Christopher’s sore back. He told us that most likely, we’d never really know the cause of the fever and that it was probably a virus. An order for five days of overnight IV fluids was placed.

We left the hospital around 1:45am. As we were driving home, the boy asked if when we got home, would I slice the watermelon in the fridge for him. I don’t think I have ever cut a watermelon at 2:15am before. A mother’s love knows no bounds.

The next morning Christopher woke with very achy joints. A little bit of oxycodone took care of that as well as provided a little entertainment for us. Let’s just say, narcotics make the boy a little loopy. By the end of that night, the fever was gone.

Christopher is still having some residual tiredness from this virus. He is frustrated at his lack of energy. He put it well when he told me “I feel trapped. When I’m sitting down I feel totally fine. I just can’t walk from A to B without being exhausted.”

Monday of this week we had a scheduled clinic visit. Labs were drawn. The boy did not make counts. His hemoglobin level was low enough that he was given two units of blood. We returned today. Labs drawn. Platelet level didn’t make counts for Methotrexate but he was able to get Vincristine. Tomorrow we go for Asparaginase (lovingly referred to as PEG – because that’s easier to say).

The schedule for this phase of treatment is a clinic visit every 10 days. We are slightly off due to not making counts but I don’t think the doctor is very concerned. When the body can’t tolerate more chemo, it lets you know through low counts. The protocol for this type of cancer treatment doesn’t allow for any shots to boost blood counts. The answer? We wait!

“Wait for the Lord; Be strong, and let your heart take courage; Yes, wait for the Lord.”  Psalm 27:14

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Another Day in the Clinic

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It’s Monday, February 25, 2013. Today brings the last round of chemo for this phase of Consolidation.

 

The next phase of chemo, called ‘Interim Maintenance’ is scheduled to begin Monday, March 4th if the boy makes counts. I have not looked at the road map in depth to give details about what is involved. New drugs will be involved. We will visit the clinic every ten days. Sometimes, it’s just easiest to put one foot in front of the other and not look at the mountain you are climbing.

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Christopher has tolerated this second cycle of the Consolidation phase better than the first phase. That said, he still does not feel great. We have kept him scheduled  with meds to keep on top of the nausea. This means he’s taking something every three hours. We upped one dosage of the meds this Wednesday. This is helping but it’s also making him very sleepy. He’s okay with that.

 

To give you an idea of how he’s feeling, here’s a run down of what he’s eaten this past week:

 

Monday – two yogurts

Tuesdsay – nothing

Wednesday – two taquito’s from Quik Trip

Thursday – three dollar sandwiches

Friday – two and a half donuts, some raw veggies, a chicken strip and a few fries

Saturday – a small bowl of spaghetti and meatballs

Sunday – four small sausage biscuits

 

Wednesday morning we called the doctor for overnight IV fluids as Christopher wasn’t drinking much. This proved to be a very good idea. We have managed to avoid an E.R. visit for dehydration as well as helping keep his headaches to a minimum.

 

Christopher has received blood the last three Monday’s we’ve been in clinic. He had two LP’s this month. Before an LP your platelets have to be at least 50 and because his platelet level was low, he got platelets before each LP. Who knew platelets looked like thin orange juice? {Christopher said it looked like pee but I’m trying to show a little more decorum.}

 

As I said, for the next phase of treatment to begin, the boy will need to make counts. He’s scheduled to begin next week but his counts are very low right now. There’s a good chance he will get a week off to allow his body to recover from the intense chemo he’s just finished. This is a good time for a PSA…..please be sure that you are healthy before coming to see Christopher. He has NO immune system right now.  A fever will buy him a hospital admittance.

 

Even though Christopher has not been feeling well, there are moments that fill my  soul with joy. Seeing him smile, hearing him laugh, when he thanks us for any small thing we do. He remains true to his sweet, gentle nature, even when he feels badly.

 

As I read Mark 5 and 6, Jesus was busy. He’d been disrespected, he’d been casting out demons, he’d been healing the sick, he’d lost a friend, he’d fed a ton of people. He was weary. He knew his disciples were also weary. He told them to go to quiet place for rest. My Bible says Jesus encouraged his friends to go with him to a “lonely place.” I like that, a lonely place. There have been times along this road that I’ve had to go to my lonely place. It is where I find Jesus. And solace. And restoration. It is only in being alone with God, that I can be restored. Jesus will always be true to his nature. It fills me with joy when I see Christ reflected in the nature of my son.

 

Christopher means “bearer of Christ”.  How true my friends, how true.

 

-Lindsay

 

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