Living with Burkitt's

One family's experience with Burkitt's Lymphoma

How technology has made this easier

My old phone

My old phone

As I look back on 2012, I wonder if it was really a coincidence that it was the year we bought our first laptop computer. It was also the year that I finally upgraded my mobile phone and $7/month pay-as-you-go plan for the first time in eight years. We consider ourselves to be a reasonably tech-savvy family, but when it comes to buying new electronics, the philosophy of “use it up, wear it out, make it do, or do without” has been our practice.

Our new electronic devices have been irreplaceable throughout this ordeal. As our pediatrician first sent us to Primary Children’s Medical Center for an ultrasound, she took down my mobile number so we could plan Andrew’s treatment and later, coordinate his hospital admission. At the same time, I was using the new phone to call Chris, who had no idea anything serious was happening, and my neighbor, so that Madeline wouldn’t come from school to an empty house. It helped us notify our parents too.

A couple of days later, in the Emergency Room, I fell in love with text messaging. It was a silent and unobtrusive way to communicate with my parents, who were with Madeline in the waiting room, and with Chris’ parents and our siblings who were miles away, but equally concerned. During our latest hospital stay, text messaging became a way for me to stay connected with Madeline, who thinks it is so cool to text with Grandma’s iPhone.

My mobile phone has been a consistent way for our family, insurance case manager, home health care service, and others to contact me while we are in the hospital. Anymore, accessibility by mobile phone is expected, because almost everyone has one. It would have been difficult to stay in touch with the necessary people on my old phone and plan.

Beyond calling and texting, my new iPhone is a lifestyle tool. When I found myself away from home unexpectedly and indefinitely, I still had a camera, access to all of my e-mail accounts, calendar, internet access, phone directory, address book, e-books, scriptures, a notebook, music and games. During that stressful x-ray procedure when the second tube was shoved down Andrew’s nose, I downloaded the “Theme from Star Wars” on the spot to help distract him.

With the laptop, we researched Burkitt’s Lymphoma, paid our bills and did most of our Christmas shopping from the hospital. This blog would not be possible if I didn’t have the laptop computer. I know that it has been helpful for many of you, and it’s good for me too.

The iPhone and laptop are both Apple products, so we have enjoyed FaceTime, which allows us to make video calls to family from our home and the hospital. Our parents have iPads or iPhones too, so that makes it easy. Through FaceTime, Madeline showed me how she learned to do back bends, and we were able to see my grandparents, who live far away and have been so concerned for Andrew. One day, Andrew was wishing his cousins could visit him in the hospital. We quickly arranged a virtual FaceTime visit, though the kids all seemed to have a lot more fun making faces at the camera than actually talking.

In electronics years, we lived a long time without a laptop computer, and my old phone gave the employees of Radio Shack a good laugh when we  bought the new one. They were both significant purchases for us, but this year, they just felt right. I’m inclined to hope that these, and other things that have come together for our benefit, may have been more than coincidences. I believe in the “lovingkindness and tender mercies” of our Heavenly Father, who has strengthened us through this trial.

Adding to our list of tender mercies, we are still home, Andrew is prowling the kitchen for food, and I did get the medical bills caught up yesterday. I have been told by several friends that their children and grandchildren, who don’t even know Andrew, include him in their prayers every night. A couple of people have recently reminded me that thousands of prayers and healing thoughts must have been offered in our behalf. If you have contributed to that number, thank you for your part in the miracle of this week. It’s not over yet, but it has already been a lot better than we expected it to be.

Psalms 103:1-4

Bless the Lord, O my soul: and all that is within me, bless his holy name. Bless the Lord, O my soul, and forget not all his benefits: Who forgiveth all thine iniquities; who healeth all thy diseases; Who redeemeth thy life from destruction; who crowneth thee with lovingkindness and tender mercies;

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Pleasantly bored

We are still home. Andrew is looking better than ever. I really want to proclaim victory over this round of chemo, but we have learned not to tempt fate. It’s still too soon, but I’m feeling hopeful.

We are not in the hospital, and we can’t go anywhere else. It has been snowing for three days straight, so its the sort of day where we don’t want to go anywhere anyway. We have had the luxury of getting bored.

Andrew started his Lego Star Wars video game from the beginning again. We actually worked on some of his homework. I made bread, something I used to do often, for the first time in months. In between, I shoveled snow from the driveway.

I’m not saying that the house is all tidy, or the floor is mopped, or the endless supply of dirty laundry is caught up. I have medical bills to sort out and taxes to work on. But some of them could be done, and perhaps still will be, if that’s what I decide to do. That’s a nice feeling.

In terms of cancer care, we just need to keep Andrew’s feed bag full and his lines flushed. He is tolerating the tube nutrition fairly well, and he stays hooked up for most of the day. I think we are going to try running it through the night, now that we are getting the hang of it, to give Andrew more freedom during the day. We occasionally flush his feeding tube with water to avoid clots and I flush his PICC line daily with Heparin (an anti clotting agent) for the same reason.

Andrew’s only scheduled medication right now is Septra, an antibiotic he takes on Mondays and Tuesdays. So, we are off the medication hook for the rest of the week, unless he needs something for pain or nausea. This morning, Andrew happily announced, “No scheduled medications today!” Oh, the things we get excited about.

Andrew and Madeline made cancer effigies today and then destroyed them. That’s an idea that Andrew has been excited about for awhile, and we finally got it done.

Take that, cancer!

Take that, cancer!

It’s nice to get a little break, especially since it can’t last. I know that Chris is having a long and busy day at work, so I appreciate my day even more. Maybe we can give him something calm to come home to.

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All about blood counts

A home health care nurse visits our home every Monday and Thursday, when we are not in the hospital, to take a blood sample for a Complete Blood Count (CBC). The CBC gives us an idea of what the chemotherapy has done inside Andrew, where his immunity is, and what needs to be done to keep him healthy enough to fight on.

Here is a chart with some of Andrew’s CBC results for the past month. I’ll explain it in detail as best I can. If any cancer experts out there have anything to add or correct (Alyce, I’m looking at you), please do.

CBC Results for Andrew

 

WBC

ANC

Hematocrit

Platelets

January 28

1.9

1.2

30.3

68

January 24

54

54

35.4

243

January 22

5.7

5.4

33.7

376

January 17

8.2

5.6

36.4

554

January 7

0.3

0

23.3

118

Normal

4.8 – 10

3-5

32-42

Over 150

Danger Zone

Less than 0.5

Less than 20

Less than 10

January 28 is yesterday, Day 10 in our current chemotherapy cycle. This is about the time when Andrew’s ANC (immunity) would be expected to hit zero. You’ll notice that it is NOT zero. It’s not even in the danger zone. Is it still going down? Is it already on the way back up? That’s the million-dollar question. Our case manager in the cancer clinic says that hitting zero is not a sure thing. Andrew still looks and feels good, relatively speaking. Time and the next CBC will tell.

For comparison, look at January 7. This is the CBC for Day 10, the exact same point in the last chemotherapy cycle. The chemo treatments were the same, except this time we received half the dose of Cyclophosphamide, which is mustard gas, by the way.

Neulasta, an injection that encourages the growth of white blood cells, must be responsible for those crazy high WBC and ANC numbers on January 24, the day after the injection. To be clear, it’s 54, not 5.4. That was Day 6 of the current chemotherapy cycle. Our case manager didn’t seem concerned about high numbers, since there was an explanation for them.

January 17 is the day before we started the current round of chemotherapy. They take the CBC before chemo to ensure that Andrew is healthy enough for the next round. All the numbers are comfortably within normal levels. January 22 is Day 4 of the current chemotherapy cycle. The numbers drop after chemo begins, but not dangerously yet.

WBC stands for White Blood Cells. These cells fight infection in the blood and tissues of the body. “The white blood cell count is an estimate of the total number of white blood cells in the blood available to fight infection.” This quote, and much of the information in this post, come from A Handbook for Families of Children with Cancer. This handy manual, written and published by Primary Children’s Medical Center, was given to us on our second day in the cancer unit of that hospital.

ANC is Absolute Neutrophil Count. Neutrophils are one of five type of white blood cells. They are especially good at fighting bacterial and fungal infections, which are the greatest danger to cancer patients. The ANC has been the most practical number for us. It tells us how likely Andrew is to get sick enough to return to the hospital, and when it’s safe to let friends come to play or visit Grandma’s house. When Andrew’s ANC was 54 last Friday, I started dreaming of taking him out to dinner or to a movie. In the end, we were only brave enough to invite the cousins over to play. It’s flu season, after all.

blood transfusion

Blood transfusion

Hematocrit is part of the red blood cells. Red blood cells give blood its color and carry oxygen to tissues in the body. If the hematocrit is too low, it causes anemia, and our doctors may recommend a red blood cell transfusion. Andrew has had two of these so far. The first was to help him bounce back from major surgery so he would be well enough to receive chemotherapy. The second was on this very day in the last chemotherapy cycle.

I have been donating blood at blood drives for many years, when I was healthy and it was convenient. It isn’t easy to take two young children to a place like that and then voluntarily put myself in a position where I can’t control whether or not they ransack the snack table. Also, I am prone to anemia, so after all the rigamarole of the screening process, they won’t always take my blood.

Now that I know that my blood helps kids with cancer, I hope never to miss another blood drive. When Andrew is back in school, maybe I’ll even make regular visits to my local donation center. My blood may not go directly to kids with cancer, but it will increase the overall supply, making it easier to give these kids, and many other people, the life-saving blood they need. Not everyone is eligible to give blood. If you are, I hope you will.

Platelets help the blood clot. These are the cells that keep you from bleeding to death when you cut your finger or have a nosebleed. If Andrew’s platelets drop, he is at risk for uncontrolled bleeding. He is also prone to easy bruising and nosebleeds. Andrew has had a few of these, but fortunately, his platelets haven’t been a big problem yet, and he was able to stop them on his own. Platelet transfusions are also a possibility if counts are low.

There are lots of other red and white cell sub-parts and measurements that are detailed in our manual. These include hemoglobin, lymphocytes, eosinophils, basophils and monocytes. I have not been given the numbers for these. I assume that the clinic has them on file, but in our case, they do not seem to be deciding factors.

Now you know. Go donate blood, everyone!

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Then and now

Day 10. It was at this point in the last chemotherapy cycle that I wrote about waiting for the boogeyman. This was what Andrew looked like then:

Nadir of Chemotherapy

Day 10 – Cycle 1

He was weak and whimpering. His temperature bounced in and out of the danger zone all weekend. It was so sad and we were so worried. We took him back to the hospital on Day 11, dehydrated and with no immunity. Later that day he developed a fever.

Here is what Andrew looks like today:

Day 10 - Cycle 2

Day 10 – Cycle 2

In some ways he looks more like a cancer patient than he did before. This time, however, he is sitting up, he is (sort of) smiling, he is putting together a new Lego kit his aunt sent from Kansas. This is as good as it gets right now.

What is different this time? Here’s my guess.

1. Luck. We can do our best to keep everything and everyone clean and use the resources we have been given to combat the side effects of chemotherapy, but a fair amount of whether we are home or in the hospital depends on good fortune. We’ll take it while we have it!

2. The nose tube. We still don’t love it, but it is doing what we hoped it would. We have added 500-750 calories and hydration to Andrew’s sips and nibbles every day since the feeding supplies arrived during the ice storm. That has to help him feel better.

3. Effective use of medications. I was surprised and and a little saddened to see how quickly Andrew bounced back when we checked into the hospital last time, because some of what they did there, we could have done at home to help him feel better. We are still careful not to overuse prescribed medications, nor give them when they are obviously not needed, but we have been less hesitant to use them this time. It helps that we can give oral meds through the nose tube. Andrew does not like how they feel going down, but he does not resist as much as when he had to taste them.

4. Experience. Knowing what to expect the second time around has helped a lot. Our doctors gave us lots of information about the possibilities, but every cancer patient responds to chemotherapy differently. It was hard to know how bad it would be until we had been there. Since we have been there and back once, we have more confidence the second time.

Yep, we are feeling pretty good about how things are going this time around. That said, don’t be surprised if tomorrow’s post, or the next day’s, is written from the hospital. In my prayers, I don’t ask (much) to stay out of the hospital. It’s possible, but not very realistic. Instead, I pray that our return will happen at a convenient moment, when we are awake and watching, when Madeline can be easily transferred to Grandma or a neighbor, when we can check into the cancer clinic instead of the Emergency Room.

Our home health care nurse is coming this afternoon to take a blood sample from Andrew. We’ll get the results later today or tomorrow morning, and they will tell us more about what is going on inside him. We’ll know whether he has any immunity. We’ll know if he needs a transfusion of red blood cells or platelets. In the meantime, we’ll watch for a spike in temperature, or other signs that Andrew needs more care than we can give him at home.

I’m going to wrap up today’s post with a sweet sign that Madeline made for Andrew this weekend. I love the message, and I love that it came from her. Dream on, everyone!

Dream on

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A sister’s perspective

now i’ts my turn. i’m Madeline. it is hard to be the older sister of a cancer patient like Andrew. And why is it hard, here are some reasons. first Andrew gets all the attention. it’s not fair. second i am used to Mom & Dad to clapping when I played the piano now they don’t. andrew has the wii upstairs and i am not allowed to touch the remote. andrew gets away with being rude. i don’t. but i do have SOME times with mom & dad like this picture:

Rio Grande Cafe

they did go to my show and to a restaurant. i love them. they are nice.

Mom says: Madeline, we love you too! In our defense, Madeline just started piano lessons in September. I don’t think we would have continued to applaud every practice, with or without cancer. We did applaud enthusiastically when we attended her first-ever recital in December. Our celebratory dinner afterward is where the photo above was taken. It was a wonderful night with our favorite daughter.

Cancer is unfair in so many ways, and healthy siblings are inevitably shorted in the amount of attention and privileges they receive. On the other hand, Madeline has been checked out of school and gets soda with breakfast more often than she would have dreamed of before. Sometimes, what is good for Andrew can be good for Madeline.

In an early post to this blog, I suggested that gift-givers not forget Madeline, and she has seldom been left out of a care package since. Thank you for that. 

Thank you, Madeline for sharing your feelings. Everything will get better someday, and I hope we’ll all be stronger for it.

therapy animals

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It takes a village

This post is dedicated to all of the people who have helped us get through every day since Andrew was diagnosed with “appendicitis” on November 6th, 2012. They are the family, friends and co-workers who have helped us manage our day-to-day responsibilities. They make it easier for us to focus our attention on getting Andrew better and dealing with all that comes with that.

Family

I am so glad to say that our family has been supportive in every way. My mom in particular has been irreplaceable. She has regularly cleaned our home, done our laundry, organized our closets, and most importantly, she has cared for Madeline. It helps that my parents live only fifteen minutes away from our house.

When Andrew is in the hospital, Madeline lives with Grandma and Grandpa with minimal disruption to her life. She attends school and all of her regular extra-curricular activities, which is no easy feat because Madeline’s weekly piano lessons start at 7:15 a.m. Grandma even has some of our neighbors’ phone numbers and has successfully negotiated carpools and play dates when needed.

Chris’ parents are no less supportive. They live farther away, so it isn’t as easy for them to help in everyday ways, but they have hosted Madeline in their home and made many more trips than usual to our home and the hospital.

Our children also have aunts, uncles, cousins and great-grandparents, near and far, who have stayed with Andrew at the hospital, entertained Madeline, sent gifts and written encouraging messages all along the way. My sister Andrea deserves a shout-out for spending an entire week of long lunch breaks at the hospital when we were first admitted, so I could eat. She and my dad have also spent the night at the hospital at different times.

A number of our family members are dealing with significant health and personal problems of their own, but we know they would do anything we needed, and then some. We love our family!

Co-workers

Chris used to be the guy who wouldn’t miss work, even if he had strep throat. I doubt that was actually a service to anyone, but it shows how diligent he is. Lately, he has relied on his co-workers far more often to get the job done.

I especially want to thank the office staff at Chris’ school – Aline, Heidi, Debie, and Shirlene – for making Chris’ life easier at work. Thank you for being so supportive when he has to leave with little warning. Thank you for taking on duties that he would normally do.

Thanks too to the rest of the faculty and staff – particularly Jeralyn, Tara, Sybil and the Sunshine Committee – who have been exceptionally kind to Chris and our family. The thoughtful gifts and donations we received from this group during the Christmas season were amazing.

Friends

Sometimes it makes more sense to call upon friends who live across the street than family who lives across town. We have been blessed by many friends who have gone above and beyond to help our family.

I am especially grateful to our neighbor, LeeAnn, who drives Madeline to and from school every day when we are at home. We were carpooling together before this happened, and it was such a relief when she graciously offered to do all of the driving. LeeAnn also took over the PTA Reflections program at our school, three days before the awards assembly, when I could no longer chair the committee.

Our friend Machelle has also been helpful in getting Madeline to her art class each week and to other activities. Her daughter is Madeline’s good friend and they take the class together. Some weeks, Machelle picks Madeline up from school, drives to and from Art class, feeds Madeline dinner and then drives both kids to an evening activity for girls at our church.

Ashley and Ann have regularly sent me encouraging emails and they have both brought treats and other surprises to our home. Ashley returned my overdue library books and put up all of our Christmas decorations after Thanksgiving. Valerie and LaNae have coordinated a supply of freezer meals, donated by many families in our neighborhood.

The danger of naming names in a gratitude post is that I have surely under-appreciated someone or left out someone important. If this is you, I apologize. The number of people who have shown kindness to our family and prayed for Andrew must be in the hundreds. We are grateful for every prayer, thought, note or gift, regardless of the size. It all matters.

We do not even know the names of many of our benefactors. Significant anonymous contributions have been delivered to our home, the hospital and Chris’ desk at work. Acts of service, such as shoveling snow from our driveway, have also been anonymous. We may not know who you are, but our Heavenly Father does, and we trust that you will be blessed for your kindness.

We are thankful for everyone who has told us “If there is anything I can do…” We know you mean it, and we will not hesitate to call if we need you. I have called specific people several times because they have been well positioned to help without going too far out of their way (I hope).

We are having a better day today. Andrew is getting used to the nose tube, and it is easier to manage than the PICC line. The PICC line is still there, but we don’t have to do much with it at home right now.

If it takes a village to raise a child, it certainly takes one to help a whole family beat cancer. Thank you all for the roles you play.

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Down the tube

Plastic nose tubes have been part of Andrew’s treatment since the first day we arrived at Primary Children’s Medical Center. They serve a helpful purpose, but we don’t like them. Yesterday, Andrew had a tube shoved down his nose and into his stomach for the fourth time. It’s a feeding tube, and it’s worth a try, but we have no mixed emotions about the tube. This is an unhappy event.

NG Tube

NG Tube

This is the first time Andrew has had the luxury of anesthesia for a tube installation. The first tube was inserted late at night, at the end of five exhausting hours in the Emergency Room. That was an Anderson tube, whose purpose was to suck fluids out of Andrew’s stomach. That was supposed to encourage his intestines to start working again. That was when we still thought we were dealing with complications of an appendectomy.

That tube was not well secured, and Andrew pulled it out in his sleep the first night. The doctors didn’t put it right back in, which was a relief. However, when Andrew didn’t improve over the next few days (probably because he had not yet been correctly diagnosed), they decided to put the Anderson tube back. Chris was alone with Andrew at the time, and he reports that the second time is not easier.

Our worst tube experience by far was the night the surgery team requested an X-Ray where barium would be used as a contrast. How to get barium into the intestine? With a nose tube. The radiologist considered using the tube that was already in Andrew’s nose, so he jimmied it around to see if he could get it to move from Andrew’s stomach into his intestine.

It didn’t work. So, with a tube already in one nostril, the radiologist pushed a smaller, more flexible NG tube down the other nostril. Andrew was fully conscious and in complete panic. Chris and I were doing our best to support the radiologist, who was doing his best at the job he was asked to do, but we still do not have friendly feelings toward him. Efforts to insert Tube #2 into the intestine were also unsuccessful. We were sent back to our room without the X-Ray to see if the tube would pass through Andrew’s stomach into the intestine by morning.

It didn’t. The surgeons decided they didn’t need the X-Ray after all.

We went to surgery and the rest is history. The useless NG tube was removed during the surgery. The Anderson tube was removed as soon as Andrew’s digestive system started working again. That was a happy day.

Skip forward to cancer treatment. We learned early that NG tubes are often used to feed patients who are sick or suffering from mouth sores. I expressed our deep, deep concern about the possibility of any sort of nose tube, and for weeks, it was successfully avoided.

With one big chemo treatment behind us, and three to go, Andrew’s weight had fallen dramatically. He was not eating enough on his good days to make up for what he didn’t eat when he was sick. When we checked into the clinic last week for this round of chemo, after a couple of good days, Andrew’s weight was its lowest yet at 17.1 kilos (37 pounds). That’s 73% of his target weight, with the expectation that it would drop further unless we intervened.

Tube feeding bag

Tube feeding bag

We have used TPN (I.V. nutrition) more than once to help keep Andrew fed, but here we still are. This time our Nurse Practitioner suggested that we try the nose tube before the mouth sores become a problem. Despite our history, we agreed. It helped a lot that Andrew seemed open to the idea, as long as the tube was inserted while he was anesthetized for yesterday’s spinal tap. The benefits of a nose tube are:

1. We can feed Andrew anytime – despite nausea, mouth sores and jaw pain – and get his weight back up.

2. Once Andrew’s stomach becomes accustomed to more food, his appetite may improve, eliminating the need for the tube.

3. Andrew can still eat and drink anything he wants.

4. Unlike the PICC line which enters the blood stream directly, the nose tube does not need to be sterile. Its contents go into the stomach and through the digestive system, which can handle many types of germs.

5. We can use the nose tube to administer oral medications. They skip the taste buds and go straight to the stomach. That was a huge selling point.

As usual, what sounds great in theory is not as great in practice. Andrew freaked out when he woke up from the anesthesia. Not even the pretty Child Life Specialist was able to work her magic this time. The RTU nurse tried to be a good sport, but he seemed really happy to send Andrew back to his room, still in a tantrum. Andrew was unhappy all day. Chris and I were unhappy for him.

The new NG tube feels like a plastic noodle stuck in Andrew’s throat. He feels gaggy. Though Andrew was hungry before the procedure, the tube discouraged eating and drinking for most of the day. Even at room temperature, oral medications feel cold going down the tube, and he dislikes them almost as much as before.

It is possible for Andrew to cough or vomit the tube out, or for the tube to reposition itself where it doesn’t belong. I was trained on how to insert a new tube, but I’ve notified the NP that if the tube comes out, it may not go back in. It almost certainly won’t be done by me.

Yesterday was a difficult day. Today is a little better, so far. I hope that Andrew gets used to the tube and it serves the purpose it should for as long as it needs to. If so, maybe we can muster some gratitude for a torture device that keeps Andrew from starving.

Today we are going home. I was told by our Nurse Practitioner yesterday, “I’m sure we can get you out of here by 10:00 a.m.” We have learned to add two hours to all estimated discharge times. It’s 11:15 now, so it looks like we’re on track. Wish us luck! We need it.

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Night of the Living Cancer

Sometimes this experience feels like a movie. In fact, this current round of chemotherapy is more like the sequel to a movie.  But let’s start with Part One.

Andrew is our intrepid protagonist. He is pure in heart, a hero in embryo.

The first obstacle he faces is fairly minor:  sharp, intermittent stomach pains. As in any good mystery, there are several red herrings in this tale, such as the radiologists at Primary Children’s Medical Center (PCMC) diagnosing appendicitis despite Andrew’s pediatrician believing the problem to be an intussusception. This is what they call foreshadowing.

Appendicitis is scary to be sure, but familiar at the same time.  Laparoscopic surgery is minimally invasive and easily removes Andrew’s appendix. He still has to be brave. Being rolled away from your parents alone is bound to be terrifying for a five year old boy.  But of course he awakens after the surgery safe and sound sans appendix to the sight of his worried parents. Trouble has been overcome, a short movie.

Burkitt's Lymphoma

But no, it turned out the appendix was an aforementioned red herring.  It was never inflamed.  An incorrect diagnosis.  The stomach pains return now combined with frequent vomiting.  Andrew and his family travel  to the emergency room of their local hospital about a day after the surgery.

This event is cloaked in bad omens such as a man vomiting in front of Andrew’s sister and the power going out, momentarily leaving behind an eerie quiet as all of the many background sounds in the hospital transform into complete silence.

Andrew is now sent back to PCMC with a suspected ileus, a bowel blockage caused by a reaction to surgery.  The family is assured by the Nurse Practitioner at the hospital that this will pass in a few days.  She is asked by Andrew’s father about the odds of surgery. She looks at him skeptically and in a condescending tone informs him that surgery would be extremely rare and that the bowels will start moving on their own in a few days.

Andrew is asked to be patient while the intermittent pain becomes less intermittent and more of a constant.  The pain is also increasing its intensity. Andrew’s family watches his agony helplessly. Their child is suffering and all they can do is encourage him, hold him, watch him, love him, pray for him.

Waiting also involves several more trials placed in the path of our hero. One of these trials is the frequent poke of needles to place IVs or to draw blood.  Another one is the insertion of a plastic tube up Andrew’s nose and down into his stomach to suck out the contents. To watch it happen is to see a demented magic trick performed by nurses rather than a magician.

Andrew is encouraged to walk several times a day despite the pain. Sleeping is difficult for him due in part to the excruciating pain but also the tube which has the tendency to create the illusion that he is choking, especially when he is in a relaxed state.

Another monster arrives in the form of the steel tray filled with needles pushed into Andrew’s room by young phlebotomists.  Frequent blood draws mean pokes all over his body. He is soon nothing but a mass of skin and Sponge Bob bandages. A PICC line will soon be inserted to make blood draws painless. Until the line becomes infected and has to be withdrawn and another inserted.

Burkitt's Lymphoma

The surgeons debate young Andrew’s future. Some think the cautious path of waiting is still the best one.  Others believe that exploratory surgery is the preferred option to pursue. The input of his parents is sought and received. It is time to try surgery.

But before this turn of events, which will eventually lead to a twist in the story, another X-ray is attempted. A second plastic tube is placed alongside the first one. The radiologist attempts to forcefully insert the tube down into Andrew’s bowels to place barium.  If the goal was to cause pain and an enduring mistrust of radiologists then mission accomplished.  However, if the goal was to perform a successful X-ray, not so much. In fact, the doctors say later that procedure was not necessary. Andrew’s family is less than thrilled.

Going to the Operating RoomAndrew is ready for this surgery. He has already been through a gauntlet of obstacles which have given him a reservoir of strength to draw upon. Still, it requires much bravery to again be wheeled away from your parents and fall asleep surrounded by strangers in masks and gowns.

“Aha!” the surgeon loudly exclaims, “we have found the problem.  It was an intussusception.”  He says this in a self-assured, confident manner.  He says it as if his “discovery” was the first time Andrew’s parents had heard this foreign sounding word.  As if  the family pediatrician never existed and  if this hadn’t been her suspected cause of these troubles all along.

No matter. Despite his confident, almost arrogant way of speaking, the surgeon has done his job well.  He had to cut out about a foot of intestine. He also had to spend about forty minutes cleaning up the popcorn, Andrew’s last meal, that had spilled out of his innards as they decomposed in the doctor’s hands. If this story was a movie I think we just moved from a PG to a PG-13 rating.

The surgeon goes on to discuss possible causes of the intussusception. All that is heard is that the problem was resolved.  Again, a short movie, but one with a happy ending. At least until the twist. But no, even before our twist the suspense builds again as Andrew’s body reacts to the major surgery he just endured with high fevers that soon necessitate a trip to the ICU.  If it is suspense you demand, the ICU is your place. It feels like the hospital you see on television.  Medical professionals are bustling about and patients are rushed in and out.  Machines beep constantly and medical jargon is frequently overheard.  Two days in the ICU can seem like a week.

Andrew soon stabilizes and is transferred back up to the third floor to continue his recovery.  This is not the idyllic time you may imagine but arguably more tranquil than the ICU.  Andrew hasn’t had a bowel movement in two weeks and when that internal mechanism starts working again the body fluids start flying unpredictably and voluminously.  The movie has now moved from PG-13 to R.  Still, a mystery seemed to be solved.  Andrew’s father goes to work on Monday feeling good.  He knows the road to recovery will continue to be a bit bumpy but it is starting to smooth out.

This is the point in the film where the twist is revealed.  Andrew’s mom is groggily walking down the hospital halls to get a drink of water.  The confident surgeon approaches and begins small talk.  As they converse, a “Code Blue” rings throughout the surgical wing of the hospital.  Staff start running from every direction into the epicenter of the emergency.  A child has stopped breathing.  While this is happening, the surgeon calmly, almost nonchalantly, informs Andrew’s mother that the blockage in Andrew’s intestine was cancerous. A lymphoma. She hears this news while a recorded voice continuously chants, “Code Blue” over the public address system. Yes, yes it is.

Andrew’s father hears the news from his wife over the phone at work. And while his role in this movie is fairly brief, his emotional reaction upon hearing the news will surely have critics call it a stirring performance worthy of awards consideration.

Nadir of Chemotherapy

The movie has transformed from a suspense film into a horror flick.  Andrew continues to be a hero and the unknown is still a major part of the story. Now, however, there is a very real antagonist. Burkitt’s Lymphoma, AKA cancer.  Cancer is a nasty foe faced by 1 to 2 children out of every 10,000 each year.  Most children escape an encounter with this beast, but he is still the second leading cause of death amongst young children.  This cancer that Andrew is facing, Burkitt’s, is even more rare.  Literally one in a million – like the odds of twenty consecutive coin tosses all coming up tails.  Burkitt’s is the most aggressive tumor in humans. It can double in size in less than 24 hours.

At this point in the story we also introduce a new anti-hero, chemotherapy or Chemo.  Chemo is a strong ally in Andrew’s fight.  Burkitt’s is an aggressive cancer that responds to aggressive chemo.  However, as the old adage goes, “with friends like this who needs enemies?”  This certainly applies to our friend Chemo. He joins forces with Andrew in his fight but the price he charges is high. He takes Andrew’s hair, not all at once, but one chunk at a time. Luckily for our hero he still looks dashing.

In the clinic

Chemo also causes Andrew to have mouth sores.  They are painful and pervasive.  It hurts him to chew and swallow.  So our hero continues the fight while losing weight and energy.  The mercenary Chemo also causes nausea, fatigue, and jaw pain.

Chemo has another friend Neupogen. He is a shot Andrew gets daily while recovering from his encounter with Chemo.  He causes bone and muscle pain along with the pain of the needle prick.  Andrew’s parents are concerned about giving him a shot every night but luckily they have been given a handout from the hospital entitled, “Let’s talk about how to give a subcutaneous injection” so that’s a relief.

While aggressive and nasty, Chemo also has his good side. He destroys cancer on a cellular level by interfering with its growth cycle.  His friend Neupogen speeds up the growth of neutrophils in Andrew’s bone marrow. It helps him to fight infections. Chemo comes to visit Andrew many ways: intravenously, orally, and through a spinal tap given multiple times.  Andrew appreciates Chemo’s help but they will never be good friends.

So Andrew continues to bravely face all obstacles thrown in his path.  And then suddenly, after fevers, and return trips to the hospital for blood transfusions and hydration he seems to recover. He has more energy. Sores start to heal. He is playing with friends and even running.

The movie ends. Andrew has temporarily triumphed. But the sequel has already been released.  Chemo II: The Revenge.  Coming now to a hospital near you.  I’m sure our hero will prevail once more.

Soccer 2012

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The certainty of uncertainty

We used to be reliable people. We made plans and schedules, and could generally be counted on to follow through. We are not those people anymore.

After Andrew’s appendectomy, I didn’t cancel anything. The PTA Reflections Assembly was scheduled three days after the surgery, and I was chair of the committee. I was still hoping to be there – with a recuperating Andrew on a beanbag if necessary.

On the night before the assembly, we spent five hours in the Emergency Room and were admitted to Primary Children’s Medical Center for the first time. I still made it to the assembly and passed out awards, but not because of my committee responsibilities. The rest of my team had it covered. I was there because it was important to Madeline, who received two Honorable Mentions.

Since then, we have left co-workers, family and friends hanging on many occasions. They have all been awfully nice about it.

For example, our plans with extended family changed frequently in the week before Thanksgiving. We will be there for Thanksgiving… We might be there for Thanksgiving… We won’t be there for Thanksgiving… Would you all like to have Thanksgiving at the hospital?

Christmas wasn’t much better. Our family was great about telling us about get-togethers, but our response was typically, “Some of us might be there. It’s hard to say because that’s two days away. Let’s see what happens with Andrew between now and then.”

In the end, we called our families at the last minute to tell them we WOULD be coming over for Christmas. And that we would insist on wiping down their houses with anti-bacterial wipes, obsessively squirting everyone with Germ-X and serving Andrew his food before anyone else was served. Unreliable AND high maintenance? Yes we are.

Chris has used more sick leave at work in the past two months than in the past ten years combined. We have excused ourselves from significant volunteer commitments, sometimes on short notice. We are grateful to those who have picked up the slack while we care for Andrew and spend time as a family.

The time will come when we are reliable again. When it comes, it will be nice to to plan ahead and expect to keep our commitments. In the meantime, I think we are learning some valuable lessons.

First, we are learning what is really most important to us. It is our family. It is taking care of Andrew and Madeline and our marriage. Work does matter. Volunteer commitments do matter. Extended family get-togethers do matter. But, sometimes even important things like these need to take a back seat.

Second, we have learned that the world really will go on without us. Sometimes we feel like nobody can do our responsibilities as well as we can. Maybe they won’t do it the same way, but that doesn’t mean they won’t get done well.

Ironically, other people have to be even more reliable for us to be successfully unreliable. Thank you to those who have allowed us to focus on the needs of our family in recent months. Thank you for being gracious about our unreliability. We will happily repay the favor someday.

Andrew is still in the hospital, receiving chemotherapy. He is feeling reasonably well, though putting up with the medicines and nausea and hospital routines tries his patience. Chris has spent the past two nights at the hospital, where he and Andrew have been doing plenty of male bonding. It’s so sweet.

We expect to come home sometime this week, but we are not yet sure when. Cancer isn’t reliable. Life isn’t reliable. Perhaps learning to accept that, and being happy anyway, is the most important lesson.

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It’s like we never left

Six hospital admissions.

Ten hospital rooms.

Four rounds of chemotherapy.

So far.

It’s interesting what we get used to. Every time we check back into Primary Children’s Medical Center, as we did today, we settle more quickly into our hospital routines. Andrew is feeling pretty good, so feeling casual about going to the hospital is that much easier.

Clinic Routine

We check into the Hematology/Oncology Clinic two hours before the spinal tap. Andrew weighs in and his vital signs are taken. He is given a hospital ID tag. We settle into an exam room. A nurse takes Andrew’s blood. Our doctors stop in to ask about Andrew’s recent health and look him over. Andrew growls at them.

Today’s variation: Andrew thought he would be able to open the new Batman Lego set I bought with his Christmas money as soon as we arrived at the hospital. He threw a tantrum when we clarified that he had to wait until we were assigned a room on the floor. There isn’t enough time or space to start a Lego project in the clinic. The tantrum raised his blood pressure, so the Tech had to take it three times.

In the clinic

In the clinic

RTU Routine

We walk downstairs to the RTU, where we are assigned another room. This one is more comfortable and has a television. Andrew is given a second ID tag. While we wait, the pretty Child Life Specialist for the RTU arrives with her iPad. Andrew gives her a cheerful “Hello!” and happily interacts with her while he plays games on the device. It’s amusing because she is one of the only people at the hospital Andrew likes.

We follow Andrew into the procedure room a few minutes later. He climbs up on the table and falls asleep moments after anesthesia is administered through his PICC line. Chris and I sit in the hall and wait for about 30 minutes until we are summoned to the Recovery Room. Andrew wakes up grumpy, but is willing to eat goldfish crackers and slurp a slushee before long. That’s our cue to pack up.

Today’s variation: Andrew woke up especially grumpy today. He insisted that he couldn’t wake up. Our efforts to calm him were not nearly as effective as the efforts of the pretty Child Life Specialist.

Inpatient Admission Routine

Andrew is rolled to his new room in a wheelchair – his transportation of choice. After stepping on the scale (again), Andrew climbs into the bed. He gets a 3rd I.D. badge. At least they cut off the first two at the same time. It’s all the same hospital. You would think they could figure out how to admit us fewer than three times in the same morning. Vital signs (again). Andrew is hooked up to I.V. fluids.

Chris and I take note of the parent bed (a pull-out chair this time) and the view (State Capitol, Federal Heights and the hospital driveway – could be worse). We start badgering Andrew about what he wants to eat and drink and he starts playing with his entertainment of choice. It’s Lego time!! We turn the TV to PBS Kids and leave Andrew in his happy place while we swing through the cafeteria for lunch.

Today’s variation: K Pod! These are the rooms on the 3rd floor without coat hooks. Maybe that bugs me so much because it would be such an easy fix. I’d rather be in the main ICS Unit on the 4th floor, where Chris and I don’t have to trek to a different unit or floor to use the bathroom or shower, but I’m resigned. It’s quieter on the 3rd floor and I don’t need an employee badge to get Andrew drinks and snacks from the Food Service fridge. I’m telling myself it’s the island off of the mainland. Islands are nice, right?

It’s cold and smoggy outside and we have been dealing with cancer all winter long. I can think of some island vacations I’d enjoy a lot more. Who’s in?

Rainbow Beach, St. Croix

Rainbow Beach, St Croix

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