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