Upstairs, Downstairs

My children are in quarantine. From each other.

Madeline woke up with suspicious symptoms this morning. She complained of a headache last night, and when she woke up with laryngitis, a headache, stomachache and stuffy nose, that sealed it. The symptoms are all mild, and she doesn’t feel very crummy, so I debated over whether or not she should go to school. But, my position on sending even a slightly sick child out into the world has changed since Andrew’s diagnosis, so I decided to keep her home and contain those germs as much as possible.

The situation is complicated by the results of Andrew’s Complete Blood Count from yesterday. I was surprised to learn that Andrew’s immunity (ANC) had dropped from 4.6 to 1.0 since Monday. He is still fighting with ammunition, but doesn’t have any to spare.

Once it was established that Madeline was home sick, we needed some ground rules:

1. Andrew keeps his “nest” upstairs and Madeline stays in the basement. They both have TV, DVD and Netflix, and I am getting an extra workout on the stairs. Win, win, win.
2. No fraternizing. This has been a little tricky because neither child feels very sick, and as you read yesterday, they actually want to interact with each other.
3. Frequent hand washing. That rule has been in effect all along, but our obsessiveness has subsided since Andrew has been doing so well. The anti-bacterial gel and wipes are seeing extra action today.

Keeping Andrew well is always a top priority, but today is an especially worrisome time for somebody to get sick because Andrew’s birthday is tomorrow AND we are scheduled to visit Make-a-Wish tomorrow. After Make-a-Wish, we are planning to visit Chris’ family for the first time in many weeks. It would be so sad to postpone those engagements. We can still celebrate the birthday, of course, but it won’t be as fun if someone is sick.

Today is today and tomorrow is tomorrow. I am hopeful that a day of rest will help Madeline to bounce back quickly. I am hopeful that nobody else will be sick tomorrow. If cleanliness, green smoothies and prayer can make it happen, then we’re as good as on our way.

9 household tips I brought home from the hospital

Fridge full of I.V. meds

Between morning piano lessons for Madeline and morning I.V. antibiotics for Andrew, today started early. It feels strange to mix the normal parts of our old life with the adjustments of our new life. It’s kind of like bringing a newborn home from the hospital. It’s a big adjustment, but being home feels right this time.

The newborn comparison works well for the amount of sleep Chris and I got last night. We still have to figure out the logistics of administering I.V. antibiotics at 10:00 p.m. and 6:00 a.m. and helping Andrew get his bag and pump to the bathroom several times each night. We have a new plan that just might work.

Andrew ate two breakfasts today, so that will make his nutritionist happy. He is happy to be home and is especially happy when he is untethered from the I.V. pump.

Since our day-to-day doings are getting to be boring (though still busy), I thought I’d share a few useful tips I picked up at the hospital.

1. Bleach clean is best

There are lots of cleaning products to choose from, but the one that the hospital used to clean Andrew’s room twice each day was common bleach. It’s the only thing that kills a nasty diarrhea bug, nicknamed “C. diff”, common among cancer kids. Anti-bacterial wipes or alcohol prep pads are a good alternative for electronics or anything else that bleach might ruin.

Turn pills to liquid meds

2. How to get little kids to swallow pills

This was never a problem for us before, because the only medicines Andrew ever took were liquids. Now, pills are on his list and he refuses to even try to swallow them. Here’s the solution: crush the pill in a medicine cup with the end of a butter knife. Add a little yummy, syrupy liquid that the child will like. Try snow cone or chocolate syrups. Serve it from the cup or pull it into a syringe.

3. Plastic medical tape works on walls

When I was looking for something to hang a Get Well poster from Andrew’s kindergarten class at the hospital, the nurse handed me the same plastic tape they use to tape gauze over wounds. It’s as gentle on painted walls as it is on skin, and holds reasonably well. It also tears easily in nice, straight lines.

Transpore tape

4. Plastic bins have many uses

Anyone who has ever spent time in a hospital probably has at least one of these pink bins around the house. In the past, they have primarily served as our vomit buckets. I have also used them for pre-soaking stained kids’ clothing. We now have about half a dozen of them and I am using them to store and organize all of Andrew’s medical supplies.

5. Home germs are not as scary as hospital germs

Andrew had lots of mysterious infections at the hospital, but since they were bugs that were living inside his intestine before we left home, our Infectious Disease team wasn’t terribly worried. It’s the unusual bacteria that finds its way into hospitals you should be scared of. So, even with an immune-compromised kid, I don’t need to mop the walls with disinfectant every day like my favorite hospital housekeeper did. Phew!

6. Use common sense

It’s easy to become overwhelmed by all the details of Andrew’s care and treatment. The advice I appreciated most was to use common sense. If anything doesn’t look right or feel right, ask more questions.

7. Nothing replaces good hand washing

Visitors entering the cancer unit at Primary Children’s Medical Center are required to wash their hands before entry. Despite gallons of bleach and advanced antibiotics, hand washing is still the best way to keep bad bacteria at bay. Anti-bacterial gel is a good alternative in a pinch, but nothing beats good old soap and warm water.

8. Think about doorknobs and light switches

Our tech came through our room every afternoon and bleach wiped all of the “touch points”. Think door handles, light switches, telephone, remote control, bed rails, etc. You don’t need to be paranoid at home, but these are prime spots for collecting and distributing germs. I didn’t think of cleaning them often before.

Playing with LEGOS

9. You can clean LEGOS in the dishwasher

That’s how ICS keeps their LEGOS clean enough for cancer patients to pass around. Use a mesh bag to keep little pieces from getting lost. This gee-whiz tip is probably not necessary for ordinary families with ordinary immune systems, but if your LEGOS have been around a few years and are feeling a little grubby…

I’m sure some of you have other suggestions from your hospital experience. What other fun things can you do with hospital supplies?

Cast of characters

December 11th

This post is dedicated to all the people at the hospital who contribute to our care. It took me weeks to learn the difference between a fellow and a resident. Hopefully, I can explain it in a way that readers will be able to sort out some of these people when I throw around their titles in future posts. These explanations are primarily based on my own experience and interpretation.

Attending Physician – The buck stops here. The attending physician is the most senior doctor on the team. He or she often delegates the nitty-gritty of Andrew’s care to everyone else on this list, but they all report back to the attending physician.

We had one attending physician in Surgery. He still visits occasionally and we can call him if we have any concerns about Andrew’s recovery. In Hematology/Oncology, we have a primary attending physician who makes the final decisions about Andrew’s treatment plan, but he isn’t the attending physician we see every day. In fact, we haven’t seen him officially in two or three weeks. We have worked with several different Hematology/Oncology attending physicians, who rotate weekly.

We also see attending physicians from Infectious Disease and Nephrology, who rotate weekly. They coordinate their advice and treatment with our attending physician in Hematology/Oncology. That system actually seems to work. I have been glad to see some healthy tug-of-war among the teams who are working to solve Andrew’s competing health problems in the best way.

Fellow – A fellow is a doctor who has graduated from medical school and is training to be an attending physician in their chosen specialty. We have met a couple of Hematology/Oncology fellows since we have been here, but there is one that has been assigned to us. We see her nearly every day, though I’ve been told that may not always be the case in coming months. When we have cancer questions, she is usually the person sent to answer them. Fellows accompany our Infectious Disease and Nephrology attending physicians too. They usually are followed by a nameless herd of others. Students or residents, I assume.

Resident – A resident is a pediatrician-in-training who is taking a turn in Hematology/Oncology. Residents are not necessarily planning to be oncologists. Unlike the physicians and fellows, who seem to keep a loose set of office hours, residents are here around the clock. There is a bedroom for the resident on duty not far from our current room. The resident handles more routine doctoring duties and decides when to call in the fellow and attending physician about something unexpected.

Nurse Practitioner – This is a nurse with advanced training and a special degree. An NP can act in the place of a doctor in many situations. Down in Surgery and Intensive Care, an NP checked in more often than the physicians and reported back to them. I haven’t seen a nurse practitioner since we arrived in ICS, but I’ve been told that we’ll see one more often when we check back in for more “routine” care.

Nurse – Registered Nurses are some of my favorite people here. They are the women and men posted outside our door round the clock. I don’t know what I like more about nurses: their know-how or their compassion. We have had dozens of nurses in the past few weeks, and while I liked some better than others, there hasn’t been one who didn’t take good enough care of my baby.

Patient Care Technician – Techs work side by side with the nurses, performing basic services for patients. They have a CNA or similar certification. Techs take vital signs, replenish supplies, change beds, empty toilet “hats”, and other such essential duties. Surgery seemed to have a lot more techs, and they were on hand around the clock. There seem to be more nurses and fewer techs per patient in the ICS, particularly between 11 p.m. and 7 a.m.

There are many other people who contribute to our care here, including Child Life Specialists, Nutritionists, Social Workers, Pharmacists and Housekeeper. I’ll cover what they do in another post.

Andrew is doing well today. I don’t think the photo above shows it off well enough. I know I mentioned yesterday that we might go home today, but I was told differently about three minutes after I hit “Publish.”

It’s still about the kidneys and the I.V. requirements. Andrew’s appetite finally picked up yesterday and we have been encouraging heavy drinking. He has been eating well enough that his TPN will probably be discontinued tomorrow. That will get us down to overnight I.V. fluids and one I.V. antibiotic to give three times daily. And a variable bunch of oral medications.

Pull out bed in our new room. Looks comfy, no?

We moved to a new room yesterday. It’s our seventh. Check one more pod off the BINGO card! The reason for the move was largely administrative – to accommodate staffing needs and to keep healthier kids near each other and away from more complicated infections. The good news is, we now qualify as “healthy” by ICS standards. Our new view is still good, but not quite as good as our old view. I am closer to the parent facilities. The biggest downside is that I got an old pull out chair to sleep in instead of one of the newer couches. Hopefully, we’ll be sleeping in our own beds again before long.

Our new estimated discharge date is tomorrow or Thursday. We may not have to return for the next chemo treatment until just after Christmas. Don’t hold us to that. As we have learned, plans change all the time in the ICS.

The perks of cancer

One of Andrew’s young cousins came to visit us in the hospital soon after his bowel surgery. When she saw all the gifts he had received, she asked her parents if she could have surgery too. My daughter, who only thinks she knows what Andrew is facing, has jealously remarked more than once that Andrew has already received his Christmas. It’s hard to convince her that Andrew has earned it all, and then some.

Who here knows what it feels like to have your intestine rot inside of you? Who here knows what it’s like to have cancer? Who here knows the fear of being separated from your family before being rolled to the uncertainty of anesthesia and surgery? Who here knows how it feels to have multiple surgeries close together? Who here knows what chemotherapy feels like? Who here has spent weeks in the hospital? Who here has to submit to vital sign checks around the clock? Who here has a line of doctors patting your stomach and listening to your chest several times a day, every day? Who here has to unplug from a monitor and drag around an I.V. tower every time you need to use the toilet? Who here has ever felt like a living pin cushion?

Andrew has experienced all that and more in the past month. Keep in mind, he’s five years old. Also keep in mind that we have barely begun his cancer treatment. The worst is yet to come.

If some good things come his way because of all this, we accept.

Today, Alec Burks of the Utah Jazz stopped by with two Jazz dancers and two of the coaching staff. Andrew isn’t a Jazz fan (yet), and neither he nor Alec were chatty in the two minutes they were in our room. I thought it was cool, though. And I have photos. To Chris and all my brothers-in-law who are Jazz fans, I have one thing to say. Na, Na-Na, Na, Na!

A visit from the Utah Jazz

We are eligible to apply for Make a Wish, and it sounds like there is a pretty good chance that Andrew will have a wish granted. Contrary to what I used to think of Make a Wish, kids do not need to have a death sentence to qualify. The illness just needs to be life-threatening. Well, if that’s all… It boggles my mind that we are in that position, but since we are, we are grateful for this kind of opportunity for Andrew. Don’t think we aren’t giving him ideas.

Andrew has benefitted from many more gifts from many more friends. New toys arrive almost daily, as gifts from friends or the hospital or other organizations. I’m not sure where we will put them all at home. They long ago overflowed the hospital room and we are now working on a rotation basis to keep the supply fresh. Fresh toys really do cheer Andrew up. Yesterday, this K’nex roller coaster arrived, fully assembled, in its display case. It’s quite the conversation piece. Even seasoned doctors are fascinated by it when they see it for the first time.

I hope it doesn’t sound like bragging to write about these things. We have been so grateful for all the resources we have been given for keeping Andrew’s spirits up. We would give it all back and more if we could walk out of the hospital cancer-free tomorrow. We feel humbled by your generosity and hope that we can pay it forward someday. We hope to be sensitive to those who endure less “glamorous” trials. Cancer gets a lot of attention, but there are many who endure unimaginably difficult things with far less support.

Andrew is doing better today. We have reason to expect that his kidneys will resume their normal function within a few days. We are already seeing improvement. Infection is still a threat, so while the antibiotics that probably caused his kidney malfunction are no longer being used, another one has taken their place. Andrew’s weight has improved. He is even looking a little chubby, though that’s probably a side effect of the steroid Prednisone. There is no more talk of nose tubes, though Andrew is getting extra nutrition through an I.V.

We have the luxury of worrying about routine things like exercise for a moment. We take short walks when we can, despite Andrew’s protests. We have seen a physical therapist a couple of times in the past week. Sitting in bed is not how a five-year-old (or anyone else) ought to spend his whole day. We learned about the therapy gym on the 2nd floor today and will hopefully get to see it on some days when Andrew is feeling good.

Never Mind. We’re back.

We were home for five hours, including drive time, before we returned to the hospital.

When we were in the ICU (Intensive Care Unit) for two days after Andrew’s bowel surgery, my husband overheard our nurse talking to a nurse trainee about the “best” departments in Primary Children’s Medical Center to work for. She told the trainee that ICS (Immuno-Compromised Services) was among the worst because parents here can be demanding after so much experience at the hospital. We didn’t know what ICS was then, but we know now, and we are “those parents”.

After all we’ve been through, can you blame us for being demanding? To the hospital’s credit, we have been encouraged by all of our health care providers every step of the way to speak up if we have a concern. Nobody here spends more time with Andrew or knows him better than we do. Despite all of the labs and scans, we are often the first to notice if something is not quite right. We are grateful that our health care providers respect that.

Last night, something was not quite right. Despite our team’s best intentions to get us home for a few days before the next chemo treatment, the timing was off. When a home health care nurse came to our house to help us get set up, she expressed concern that the number of IV medications we’d been given to administer might be too much for newbies like us with a single PICC line. We realized that there was a gap between what we thought we would need to do for Andrew and what was actually expected of us at home. At the same time, Andrew started guzzling water and urinating frequently, indicating a kidney problem. Two of his antibiotics can be hard on the kidneys. That clinched it.

We drove back to the hospital at 10:30 p.m. Our neighbor stayed with Madeline, who was asleep, until Grandma could drive across town and take command. Thanks to the efforts of our home health care nurse and Oncology fellow (a doctor), we sailed through the Emergency Room and walked straight to our new room on the 4th floor. I think this one is a bit smaller than our last room, but it has a million-dollar view of the Salt Lake Valley.

By the time we were stable and settled, it was 2:00 a.m.  Chris drove home and I tucked in for a night in which Andrew got up to use the bathroom every hour. Chris came back in the morning. We were still tired and frustrated.

We spent hours in discussions with the Oncology team today, figuring out how we can avoid future miscommunication. Remember, we are now “those parents.” Obviously, we would have preferred to avoid the whole discharge/check back in experience, but we have been pleased our Oncology team’s response to our concerns. They have listened patiently and sympathetically. Since we feel comfortable that Andrew’s health was not compromised by being home for a few hours, our confidence has been largely restored.

Andrew is on fewer antibiotics until his kidneys are back in business. Enter new doctors: the Nephrology team! Hopefully, he will start feeling better in a couple of days, and then we’ll get him sick again with chemotherapy. Die, cancer, die!

I’m sure that there are many nurses who would disagree with the opinion of that ICU nurse. The personality of a good ICU nurse would understandably be different than the personality of a good ICS nurse. There are probably few places in the hospital that compare with the ICS in terms of long-term relationship building between nurses, patients and parents. Whether in the ICU or ICS, we are grateful to have caring professionals on our side.

 

What does chemotherapy look like?

Andrew received his first dose of chemotherapy yesterday afternoon. It wasn’t technically his first dose, because they injected a small amount into the area where they took the bone marrow biopsy last Friday, but it did not visibly affect Andrew. I can live with that.

What they gave Andrew yesterday is something we are calling Starter Chemo. While it has been explained to me at least twice, I’m still not sure I completely understand it. I’ll do my best to explain. Starter Chemo is a combination of drugs that should begin to slow the cancer’s growth, but it’s not a full-scale attack. A first-time, full-scale attack could blow up and scatter the lymphoma cells, which could cause a chain reaction of bad things. I didn’t pay close attention to what those are, because Starter Chemo is supposed to avoid that problem.

Starter Chemo (COP)

Different cancers require different plans of attack. Our plan includes the Starter Chemo (COP), followed by two big-gun cycles of  COPADM and two cycles of CYM. Each letter stands for one of the drugs in the chemotherapy. Lots of other drugs, including familiar names like Zantac and Benadryl, are given around the same time to combat the side effects of the chemo. In some cases, as with Benadryl, a drug is given to combat the side effects of a drug that is combating the side effects of the chemo. Thinking about all those drugs in my son makes me hurt, but what else can we do? Pulling a Parker Jensen is not our style, though I understand his parents a little better now.

We received the COP yesterday. It consists of two cancer reducing drugs and a steroid, Prednisone. The Cyclosphosphamide and Vincristine are given just once,while the Prednisone is given twice daily. Prednisone may make him moody, hungry and puffy. The other drugs may carry the traditional chemo side effects, such as nausea and hair loss, though we’ve been told that we might not see a big difference in Andrew in this week’s dose. The nice thing about the COP is that it will not greatly reduce his ability to fight the infections we have been dealing with, so it’s a good compromise between fighting the cancer and recovering from surgery. We are praying that Andrew will get past the infections quickly. The improvement we’ve seen overnight makes us all hopeful.

The first COPADM will probably be administered next week, and then the remaining cycles will be given approximately every three weeks thereafter. Chemo treatments could be delayed if Andrew is not healthy enough to receive them. As we learned while we were here over Thanksgiving weekend, chemo can be somewhat scheduled around holidays or big events. The number of patients in the ICS grew significantly on Monday morning.

The administration of chemotherapy is not as exciting as one might think, especially if you’ve been in the hospital as long as we have. It looks like all the other drugs that have been given to Andrew intravenously through an automated pump over the past three weeks. Andrew calmly watched television throughout the process. The nurse administers all of the chemo. There is one drug that she administers by hand through the PICC line. She wears a disposable blue chemo smock and purple chemo gloves for that.

The surgeons thought Andrew looked great when they cruised through today, and said that they will probably not stop in so often unless something changes. As much as we like them, we won’t be sorry to see less of them and their 7 a.m. visits. Our goal today is to take some walks while Andrew’s immune system is still in good shape. We’re hoping that things will be really boring for a few days.

Andrew took his first real bath in weeks today. He was nervous about it, and didn’t have much fun in the tub this time, but he felt a lot better when he was done. When we returned to his room, his bed was changed and we were happy to see that his stuffed friends had kept busy while we were gone.

After the bath

Andrew has lost about four pounds since we’ve been here. As many of you know, he didn’t have excess weight to begin with so that’s a lot more significant than if I were to lose four pounds, which is hypothetical, sorry to say. Andrew is all bones and angles now. The nutritionist said this morning that he needs to start eating or he may have to have another nose tube for nutrition. The predisone may increase his appetite. The lack of surgical procedures may help too, since he had to fast every time he needed one. Breakfast went well. Keep praying for a hearty appetite!

It’s Complicated

One of the most frustrating things about this experience is that if there is a complication to be had, we just plan on it now. We miss those carefree, innocent days when we thought we were dealing with a quickie case of appendicitis in a healthy kid. Appendicitis led to a bowel shutdown, which led to surgery, which discovered intussusception and blockage, which led to cancer (?!), the treatment of which has been delayed by infection, high fevers, and most recently, fluid collecting in and leaking from the lining of his lungs. Of course, cancer is not a complication of appendicitis. It was the real problem all along, but the road to that realization was a bumpy one.

Our oncology team wanted to start chemotherapy last Friday. That was delayed through the weekend by ongoing fevers as high as 103 Fahrenheit. By the way, PCMC uses the metric system, so temperatures are taken in Celsius and weights are taken in kilograms. 103 F is equal to 39.3 C. We have been in and out of the 38’s and 39’s (101+ F) for much of the past week. When we eventually go home, we will need to check back in to the hospital for any fever over 101 F. Chemo was held again on Monday due to another fever spike.

We had a CT scan that day, our fourth in three weeks, which showed some collections of fluids in the intestine and lining of the lungs, either of which could cause infection. Our teams, which include Surgery, Oncology, Infectious Disease and Radiology, put their heads together and decided to attempt to drain the abscesses on Tuesday. Sedation was required. For the fifth time in three weeks. Urg.

Phineas and Ferb on the jumbo-tron

For this procedure, we discovered the hospital’s Jazz Room. It’s a room in Radiology that is decorated like the locker room of the Utah Jazz NBA team. Signed photos, jerseys, shoes and ceiling tiles surround the hospital equipment. It even has a jumbo-tron. Andrew is not the Jazz fan he ought to be, but Chris was impressed. They tuned the huge screen to Phineas and Ferb while they prepped Andrew for the procedure. We were sent out of the room a few minutes later. I assume that after the sedation kicked in, the screen was tuned to Andrew’s insides via ultrasound.

The procedure seemed to go well, and chemo was set to start on Tuesday evening, but after a couple of hours back in the room Andrew suddenly cried out in pain and gasped for air. I ran for the nurses and they all rushed in. I think I took my first breath after a nurse called that his oxygen levels were OK and I saw that Andrew was breathing. I saw a couple of Code Blue responses when we were living in the surgical unit. Sirens wail and a dozen people run for the room. One Code Blue occurred as our surgeon caught me in the hallway and told me for the first time about the tumor. Code Blue seemed appropriate because something similar was going on inside my head.

NBA signatures on the ceiling

A mobile x-ray machine was called up and Andrew screamed in pain when they made him lie flat. The x-rays showed that the fluid in his lungs had sprung a leak and a PICU (Pediatric Intensive Care) doctor was called up. She looked him over and decided that it would be better to wait until morning rather than attempt a blind drain of the fluid. A diarrhetic was administered to flush him out and chemotherapy was postponed once more. At that point, I was starting to feel the same longing way about chemotherapy that I felt about labor in my 38th week of pregnancy. It seems wrong to want something that is going to cause pain, but if we can’t avoid it, let’s get it over with already!

Jazz display case in Radiology

Andrew slept sitting up and was comfortable enough through the night. Can’t say the same for myself. I usually get a tolerable amount of sleep here, but it was hard to stop worrying. Nurses come and go throughout the night and machines start beeping every so often. If the nurses don’t hear them right away, I keep the call button handy. Because of the light outside the door and the glow of monitors and machines, it’s never very dark in the room. The bed is basically an open ended couch. It could be worse.

This morning we returned to Radiology for an ultrasound. The Radiologist found that there was very little fluid left in the lungs, too little to justify the risk of installing a drainage tube. I am nearly always relieved when the doctors recommend less intervention instead of more intervention. More intervention too often means more complications, despite the benefits. I asked three different doctors about the pain Andrew was still feeling and their best guess was lingering inflammation or a possible tweaked nerve. He seems to be feeling better, but he is still hesitant to lie flat.

Chemotherapy is being administered now. Despite the nurse’s HAZMAT suit, it’s not as dramatic as one might think. More about that later.

Our journey begins

How did this happen to us?

We ask ourselves that question on a daily basis. Last month at this time, we were a happy, healthy family. Our lives weren’t perfect, but for the most part, we knew how good we had it. Our problems were of the usual sort: stress at work, busy schedules, keeping track of finances and an occasional case of the flu. That’s where our journey began.

Two months before diagnosis

The day after Halloween, a Thursday, Madeline was sick with the flu. I asked Andrew how he was doing and he mentioned that he had a stomachache. Who doesn’t on the day after Halloween? I made a mental note to make him a green smoothie as soon as I could get to the store for supplies. He has a history of minor digestive problems and I figured that would fix it, because it usually did.

Over the weekend, Andrew starting having painful abdominal attacks. They immobilized him, but they were brief and only happened about once a day. When they were still happening on Tuesday, November 6, I left a message for his pediatrician asking for advice before we left for Kindergarten. I was volunteering at the school that day, so I was already there when he had two more abdominal attacks.  I checked him out and called the pediatrician, who gave us an immediate appointment. I was advised that it could be a virus, but that it was probably best to bring him in.

The pediatrician looked him over and recommended that we go directly to Primary Children’s Medical Center (PCMC) in Salt Lake City to get an ultrasound for intussusception, which is where the bowel telescopes inside itself and can cause big problems. At PCMC, the radiologists found an enlarged appendix and we were given the option to stay there for an appendectomy or go to the hospital near our home. We opted for our home hospital. Andrew had an appendectomy that evening, which went well. I watched the election results from a painfully uncomfortable pull-out bed in his room.

Waiting for appendectomy

We were discharged the next morning and he was acting like his old self, despite a couple more short abdominal attacks, until he had an attack that wouldn’t quit at about noon on Thursday, November 9th. I called his surgeon and the nurse at the hospital who recommended a laxative and a heating pad. By the time we got those going, he had become lethargic. He was moaning and vomiting often.

After a couple of hours and more phone calls, we decided it was time to go to the Emergency Room. We spent five anxious hours there while he drank the contrast liquid and had a CT scan. The CT revealed an intestinal blockage and the ER doctor got Andrew’s surgeon on the phone. They guessed that he had an ileus, a common complication after abdominal surgery where the intestines shut down temporarily. They guessed that his system would start up again after a few days in the hospital, but they recommended that we bring him to back to PCMC, just in case it was something more serious. They put a tube down his nose to suck out fluids from his stomach and that was a terrifying experience for all of us.

We drove directly to PCMC and checked in through the Emergency Room. The doctors didn’t seem overly concerned because they assumed that his body would start working again on its own after a day or two on an I.V. We were assured that the necessity for another surgery was nearly impossible. During the night, his tube came out somehow. They left it out for a couple of days until his vomiting became worrisome. Putting it in the second time was just as horrible as the first.

They also replaced his I.V. with a sturdier PICC line so they could give him protein and lipids intravenously. They put a tube down his other nostril in an unsuccessful attempt to get a particular x-ray. He continued to suffer from abdominal pain and was not allowed anything to eat or drink for a week. It was miserable.

Taking a break during a walk

By Thursday, November 16, his situation had not improved, so the attending physician decided to operate. Once inside, they found the intussusception that his pediatrician guessed in the first place (we’re keeping her) and a kink in the intestine about a foot farther down. The intestine in between was blocked by something and had died. It fell apart in the surgeon’s hands and we were grateful they hadn’t waited any longer before doing surgery. They cut out the bad part and sewed him back together and we were on the road to recovery once more.

We spent the night back in our old room, but his sodium levels were dangerously low and we were soon moved to the ICU on the 2nd floor for two days where the staff could monitor him more closely. We didn’t realize how private and homey our room in the surgical unit on the 3rd floor had been until we spent time in the ICU, so we were happy to move back upstairs on Sunday, November 18. On Monday, the PICC line was removed due to infection. I didn’t think I would miss it until the antibiotics burned through four I.V.s. in three days. Every time the I.V. failed, his hand and arm swelled up to twice its normal size. A few days ago, another PICC line was installed at the same time as the bone marrow biopsy and lumbar puncture.

Things took a turn again on Monday when our surgeon came to visit in the middle of the day with the report that Pathology had found a lymphoma in the tissue removed during surgery. A tumor had caused both the blockage and the intussusception when his intestine tried to pass it. It was all very sketchy at that point, but we met the oncologists later in the day. They guessed that we were dealing with Burkitt’s Lymphoma. That diagnosis has since been confirmed. Burkitt’s Lymphoma is a highly aggressive, but highly treatable cancer. The odds of being cured are in our favor. We are grateful for such a sunny outlook, but we still fear the worst. We feel like we have already beat the odds in all the wrong ways this month.

On Sunday, November 25, we moved to the ICS on the 4th floor. We have now spent quality time on every floor of the hospital, since Radiology is on the first floor. We are expecting four cycles of chemotherapy over the next few months. The first dose has been postponed for a few days because of ongoing infections from the surgery. Lots of bacteria were set loose in Andrew’s body when his intestine fell apart in surgery and despite being pumped full of serious antibiotics ever since, the infections persist. Chemotherapy will compromise his immune system, so they don’t want to give it when there is known infection. There doesn’t seem to be any worry that the infections will go away eventually, but every day chemotherapy is postponed is another day that an aggressive cancer lives on.

We have been asked many times how we are holding up. What is the right answer to that? I usually respond that we are O.K. We are functioning and doing the things we need to do. Occasionally, we even find little things to smile or laugh about, but there is no way to thrive under these circumstances. While one of us sleeps at home every night, nobody has lived there in three weeks. We are exhausted. We are sad. We want things to go back to the way they were before. We know that even if Andrew is cured, which is likely, our lives will never be the same.