Tuesday, September 25, 2007

The day in the life of an esophageal dilation...

e·soph·a·ge·al pertaining to the esophagus.

e·soph·a·gus a muscular passage connecting the mouth or pharynx with the stomach in invertebrate and vertebrate animals; gullet.

di·la·tion the act of expanding or the state of being expanded.

tra·che·ot·o·my Surgical incision of the trachea through the neck, as to make an artificial opening for breathing.

G-tube A tube inserted through a small incision in the abdomen into the stomach and is used for long-term enteral nutrition.

The morning begins early, “’O dark-thirty” to borrow an idiom from our friends. The night before I’ve made sure Josh eats an adequate dinner, gets to bed early with a generous g-tube feed just before he falls asleep. This gives him a little extra in his belly, as he won’t be able to eat the next day until late afternoon. Sometimes an anesthesiologist will call that evening to discuss Josh’s sedation making sure I know he cannot eat and drink for six hours before the scheduled time of his procedure. Many times they don’t call, seems we are “pros” at this and therefore; don’t need a call.

Yes, I have a favorite anesthesiologist, one who really cares about Joshua, and we always request her, but rarely is she able to attend his dilation. This can make it tough if I come across a “new to us” doctor who has an ego. I know how Josh responds, I know what he needs, after all we’ve gone through this procedure over 100 times by now, but if I don’t approach a “new to us” doctor in just the right way, I can alienate him. I WANT the anesthesiologist on my side, so I tread lightly. Sometimes, if they are “new to us” doctors, they’ll take one look at Josh’s enormous file/records and ask me how we handle the sedation. This endears me to them as I know they have come to the realization of the knowledge, heart and soul and power of an involved, but not overbearing or hysterical mother. Some doctors really respect and rely on the mother, truly listening to them. Some doctors do not. Maybe they’ve had a dreadful experience with a mother. Maybe they just have a huge ego.

I wake first, letting Josh sleep, while I get myself dressed and ready for the day. Then I rouse Josh, unhook him from his mist machine, give him his Levoxyl medication, and pack him in the car fully dressed in his pjs and socks. I love the fact Josh has NEVER had to wear hospital pjs. This has helped him feel some control and comfort. We drive the half hour to the hospital, park and walk in and up to the third floor where we check in with Edna in Pediatric Admissions.

Edna is a kick! She’s kind, loving and always has a cheerful smile on her face. And if I ask her, she’ll begin preaching and sharing scripture verses with me just for encouragement. And oh, can she preach! She loves seeing Joshua. Once we’re checked in there, we head down the hall to Pediatric Short Stay. The nurses there are phenomenal, especially Nurse Susan. They are so happy to see us and ask how we are, getting us into a room; usually a private room, and then Nurse Susan comes up with a fun game for Joshua to play using medical “stuff”. She’s very creative. Lately, though, he’s not been interested preferring to watch cartoons.

I fill out all the necessary forms; which I could do in my sleep. Josh is weighed, has his temperature and blood pressure checked; then is sent back to his room to relax in front of the TV. Sometimes he plays video games in the playroom. Most of the families in Short Stay are having minor procedures done, such as ear tubes, tonsillectomies etc. Once, an irate mom was at the desk giving the nurses a hard time. She wanted to know EXACTLY when her child would be taken in for ear tubes, after all they’d been waiting for hours and her child was hungry. The nurse tried to explain she didn’t have control over the doctors and how much time they took for each procedure and sometimes they get backed up. I watched and listened as they argued and bantered back and forth, nurse and mother. I remembered back some 16 years before when my first born was getting ear tubes. Oh, the worry of sedation and doctors and hospitals. Now I have to laugh at myself back then. How na├»ve I was and yet my response was so normal. Finally the mother furiously left the nurses station and one of the nurses mumbled how she’d LOVE to introduce that mom to Josh knowing all he’s been through, so the mom could see a really “sick” child compared to a child just getting ear tubes and maybe she wouldn’t be so difficult. I felt torn between both sides and I quietly said, “It’s all a matter of perspective. Perspective is everything.”

After a while, we’ll have our reunion with Josh’s GI doctor. We catch up on each other’s lives, he asks Josh how he’s doing, asks me how Josh is doing, then I sign the consent form. I’ve never been able to stop the cringing in my gut when I sign that form, always hoping and praying everything goes well. Soon Josh is wheeled in his bed down to the second floor into the endoscopy suite. There Josh is met by more wonderful people who know him, have taken care of him and who really enjoy him. That’s where I meet the anesthesiologist sometimes for the first time. Slipping the gas mask over his trach tube, they always let me stay until Josh is completely asleep. I so appreciate this, more than I could ever express. Once he’s asleep, I kiss his forehead, say a prayer, ask everyone to take good care of him and walk out into the hallway to wait. It is ALWAYS emotional demonstrated by my inability to stop the lump in my throat and tears in my eyes. Never have I been able to just breeze through.

Waiting is the worst part and waiting alone is difficult. That’s the way it is now, since esophageal dilations have become routine. My husband has work, the girls are in school and I sit there alone in the hallway, sometimes pacing and quoting scripture, sometimes sitting in the puffy chair just down the hall a ways. I watch people walk by, sometimes I see nurses or doctors or childlife workers I know from Josh’s past care. Sometimes I try to read a book.

Usually, I see the doctor step out of the suite looking for me within half of an hour. A few times they’ve been in there a long time, too long. This is when I know something hasn’t gone well. Josh has an esophageal stricture (a ring of scar tissue in his throat) due to the radiation treatment he went through in February-March of 2005. This treatment was to save his life, killing any residual tumor discovered in his neck vertebrae. Unfortunately, it also caused damage. When the dilation hasn’t gone well, it’s because the stricture has shrunk down to a very small opening making it difficult to dilate.

I’ll never forget the words of one of our pediatric oncologists as she was visiting us in the pediatric ICU. We had just discovered the esophageal stricture and the tracheal stenosis (swelling in his airway), both damage caused by radiation, which required the doctors to give him a g-tube, so we could feed him and a tracheotomy so he could breathe. Her eyes were full of tears as she looked at me and said, “Sometimes the damage we cause through treatment for cancer is horrendous. Only you can tell us if it was worth it or not.” I contemplate these words often.

The GI doctor always shows me the picture he snapped of Josh’s esophagus before and after dilation. We discuss a little more about Josh, how there’s nothing in the medical world to heal his throat, how we just need to continue dilating so that the esophagus does not close completely. If this happened we would have to do emergency surgery and esophageal surgery is very tricky. After consulting numerous doctors about the stricture, these words stick in my mind, “Esophagus tissue is very unforgiving.” In other words, we could try to “fix” it with surgery, but there’s no guarantee it would work. Josh might end up in the same place, or worse off…or it might be successful. It’s a harsh decision for my husband and I to make. Right now, we are in no hurry.

As we talk, Josh is wheeled out of the room and down to the basement and into pediatric recovery. He’s still asleep. I head down there as soon as I can letting the anesthesiologist know I want to come into the recovery room as soon as possible. The nurses in recovery all know me well. Typically they don’t let parents in until the child is awake. But I’ve proven myself over and over again and I know what to do and how to let him wake up and how to suction him and how to question him finding out if he needs pain medicine or not.

Before I can go into recovery, I check in with the volunteer in the family waiting room. Every time I step into that large waiting room, I am assaulted with memories. I glance to the right looking at the small private waiting room on the right and remember sitting there in 2004, praying the biopsy report would be benign. Before he was even out of surgery, the pediatric oncologist came in and uttered these words, “The biopsy showed round blue cell…sarcoma…cancer.” I push those remembrances away as I show my wrist band to the volunteer. It’s always the same woman and I discovered early on she guards her territory well and takes her volunteer job seriously. I try not to speak to her as she and I have had a “run in” once before. She likes control and so do I. Walking back out of the waiting room, glancing at all the people, some trying to nap, some noticeably nervous, I stand in the hallway waiting just outside of the pediatric recovery room doors. The nurses know I’m there and after they get Josh settled, they call me in.

As I walk through the double doors, I note whether it’s full of children or not. Most often it’s pretty quiet and I greet and hug many of the nurses. Sometimes curtains are pulled around the little child’s bed for privacy; sometimes I can see the other babies. I catch up on the lives of many of the nurses and share about our lives. We allow Josh to sleep, making sure he wakes up peacefully. I always check to make sure the anesthesiologist has given him a little narcotic for pain. This makes his wakeup time much more pleasant. If he doesn’t get any, he wakes up hurting and crying. This has only happened once, when I forgot to ask and insist on the drug.

Once Josh is awake and he nods his head indicating he’s ready to go up stairs to see Nurse Susan, we are on our way with the help of someone in transport. We talk with them on our journey back to Short Stay, catching up on their lives as well. Back in Short Stay, nurse Susan makes sure Josh isn’t in any pain, and then offers him a Popsicle or ice water. This is to make sure his throat is not torn or damaged from the dilation. Once he’s drinking well, she takes out his IV, which is usually in his hand, but recently was discovered in his foot. He was NOT happy about that one! Nurse Susan finds the “coolest” band aides there are for 7 year old boys; Batman, Superman or Spiderman are the usual choices. Josh doesn’t even notice when the IV’s being removed anymore. We wait about an hour in Short Stay before we are allowed to head home. I sign the consent form to leave, am reminded to keep Josh’s activity level down because he was sedated and what number to call if he were to develop a fever. A wheelchair or wagon is brought to us and off we go…home! Josh falls asleep quickly that night and I’m exhausted, physically and emotionally spent.

Josh doesn’t feel well for the rest of the day and often on into Wednesday morning. I’ve learned to keep Motrin or Tylenol in his system until Wednesday evening. This makes a big difference in how he feels, but Wednesday can be a hard day for him at school. I remind the teacher he’s had a dilation the day before. Thankfully, she understands. He eats very little by mouth for a day or two, then it’ll slowly pick up and he’ll eat normally. By this I mean normal for him, not what a typical 7 year old boy would eat. He’ll do well for a few weeks, and then he’ll begin eating less and less by mouth. Finally he’ll have difficulty swallowing water and it’ll be time for his next dilation.

Each night we thank God for Joshua's life. Each night we pray for continued healing.

Every six weeks for the last two years we’ve taken Joshua into the hospital to have an esophageal dilation and we will continue as there is no end in sight…

Friday, September 21, 2007

Let's set the record straight...

Our city was NOT the enemy, as the local media portrayed, when it came to allowing Joshua’s dream to come true!

Josh’s dream was big from the start. From the beginning, he insisted it was to be a “HOUSE in the Trees” (his words) not a tree house; complete with a kitchen, a garage, a shower and bathroom! And he wanted all seven of us to sleep there. Five years old and in the middle of a grueling treatment for Ewings Sarcoma, this vision was what gave him hope. He talked about it during the day and he dreamt about it each night and also when he was sedated for numerous medical procedures. Of course, we had to make some limits; there would be no flush toilet or shower in his House!

Josh and one of his sisters captured his dream on paper and it caught on like wild fire! Many of our friends and neighbors, talented people from our church and community stepped forward telling us they wanted to help make Josh’s wish come true. Soon an architect drew up a plan, and then companies from all over the area began to offer donations: lumber, siding, roofing, window materials and workers.

After the city had been notified, the plans had been examined and we’d been given the go ahead to build without permits, the “barn raising” began. It was a warm weekend in August 2005. Unfortunately, Joshua was in the hospital, unable to participate as he was receiving yet another round of chemotherapy.

I LOVE sharing this story with you, but like many good stories, there was a bad guy…and it wasn’t our city. One of our neighbors did not like what was happening and he began to make phone calls. I couldn’t believe anyone would try to stop the dream of a little five year old boy who was fighting cancer. He called the city and reluctantly, they came out to look at the job site. They had no choice but to stop the work, saying we needed to get permits. The neighbor’s complaint? He was worried about the safety of the children who would one day play in the House in the Trees. Oh, really? He had also told another neighbor it blocked his view. Anyone who has visited the House in the Trees will tell you this simply isn’t true.

About this time we almost lost Josh. He went into anaphylactic shock just after a platelet transfusion had begun. Thank God his doctor was nearby and knew exactly what to do. So while my husband and I were in the hospital taking care of our son, the halt to Josh’s House in the Trees was all over the local news. Every major television station called wanting interviews. And the bad guy the news papers and radio talk shows were attacking was the city. Yeah, right... My husband and I wanted to set the record straight, but we realized giving the name of our neighbor wouldn’t help the situation. So we just ignored all the calls, focusing on our little boy.

The city soon called a meeting and like a group of lawyers looked for loop holes in the law, discovering a simple way to make the House in the Trees comply with code. Creative ideas were implemented and permits were given and the House in the Trees was once again under construction! In the mean time, our neighbor called an environmental agency twice, hoping the project would be stopped. He came over to complain about the construction noise. Still we did not give his name or cause him any trouble. We were found to be within the law with the environmental agency and today the House in the Trees is 99 percent finished!

We sleep in Josh’s House in the Trees most every night, Joshua, his daddy and I. Sometimes the girls will join us too. It’s a House of blessings to us. Our neighbor, the one who tried to stop the House in the Trees, is building a large garage in his backyard now. We have said nothing. It’s a cold, sterile building, not quaint with a “cabiny” feel like Josh’s House in the Trees. But we will not complain to the city. We will not call the environmental agency. We wish the neighbor well. God tells us to pray for our enemies and so I do.

Josh began fighting cancer in October of 2004. Just last June 2007, the neighbor asked, for the very first time, how Josh was doing. I see him walking around his job site, seemingly happy with the progress. I heard he will fill it with his “classic” car collection. While Josh, my husband and I snuggle together each night in Josh’s cozy, warm pine scented House in the Trees, we soak in the love, feeling the blessings and caring of others surrounding us and we sleep in peace. Thank you one and all.

Thank you, city of Tigard!

Friday, September 14, 2007

The anorexic child vs. the child with cancer...

I would watch as the nurse wheeled you down the hallway towards the lounge. Most often you were a girl, sometimes you were a boy, but always you were skin and bones, pale with sadness in your eyes, barley taking up space in the wheel chair. You were not allowed to expend any energy with your heart rate down to twenty-six beats; you were tethered to a heart monitor. Never allowed privacy not even when using the toilet or taking a shower in your room, always would a nurse hover over you and it was no different in the lounge where you were supposed to eat your meal. I would watch you stare at the tray of food. Each of you had a pattern, but it was similar... you would straighten the tray, put your napkin in your lap, take your fork and push the food around. Then you would set the fork down, re-fold your napkin and straighten your glass of milk. Finally you would pick up the fork, putting a little food on it and bring it to your mouth, only to stop, setting it down again and re-straightening your tray. It was agonizing to watch. I did not understand. Did you want to disappear? What kind of monster were you battling in your mind?

My son was fighting a monster too. It was growing inside of him unseen until the x-ray exposed its existence. He did not choose this monster. My son like you was wasting away, only he had a feeding tube and was tethered to an IV pole, which pumped in chemo-poison trying to kill the monster. He desired food, but knew he would just throw it up again. When I was told Josh had cancer, they began to explain the treatment of chemotherapy, radiation and surgery .When I learned of the damage that could be done to his virgin body both now and lurking in his future, it was all I could do to stop myself from scooping him up in my arms and running. It all seemed so barbaric. But I had no choice, as the doctor explained the courts would take him away from me if I did not consent to his treatment. I had no choice.

With treatment over, we no longer pace the halls where I used to see you, not understanding your fight. There is no scan to reveal the beast in your mind. Did you want to be invisible? Now the damage is done to my little boy’s body, but the monster is dead. The radiation fried his airway, melted his throat and destroyed his thyroid, but the monster is dead.

I had no choice. But you do. I do not understand, but I beg of you, choose your life. You have the power. Fight the monster. Choose your life.

Tuesday, September 11, 2007

It's the end of an era...

Those were the words spoken by my brother as he helped disassemble the bunk beds my oldest two daughters had slept in for many years. The girls are gone now, off to college, exploring life as young adults. I am left with a room full of their treasures…memories from their childhoods. As I dug through their memorabilia, stuffing it all into boxes until a time when they can sift through it themselves, snippets of their lives flash through my mind. I carefully wrapped the Breyer horses given to them in Indiana on our 1997 motor home trip across the USA. The book and CD collection tell of their favorite authors and musicians. Movie stubs, ribbons won in art competitions, poems written with the passion of a teenager, all tell stories about my girls and who they are, maybe even hinting at who they will become. A bottle collection from Europe and Africa, loose pictures of friends and sisters making silly faces, prom dresses, fancy shoes and delicate wraps all passing through my hands bringing a smile to my face and a little sadness to my heart. It’s the end of an era…

I indulged myself and spent an hour last Saturday afternoon watching each daughter’s graduation DVD. Pictures put to music of their doll like faces in infancy and their chubby bodies in toddlerhood followed by the little girl and then the gangly pre-teen and finally finishing with the beautiful eighteen year olds. I allowed myself to cry. I am proud of them both, each unique, each individual. One is messy and one is neat all of their lives spent sharing one bedroom and yet they enjoy a close relationship as only sisters can. It’s the end of an era…

They often call on my cell phone, “Hi mom! What are you doing? How are you?” And as we chat my heart sings as I hear about their new classes or their new friends or their professors. Most often they call just to hear my voice, once in a while they call asking for advice. I’m their coach now, listening to their dilemmas, asking solid questions allowing them to think things through and come to a decision. And it’s their decision, not mine. Not quite a peer, I am, however; someone they acknowledge as having a little wisdom. I guess the “wisdom” is shown by the lines on my face. It’s the end of an era…

Their room has become the guest room now, soon to be filled, ironically, with a college student from a foreign land. After all I’m used to cooking large dinners and the stipend for the room and board is much needed. One of our younger two daughters eyed the room for a while, making plans of inhabiting it and decorating it to soot her tastes. But I insisted they continue sharing a room just as their older two sisters had, after all it will benefit them once they hit dorm life enabling them to adjust quicker and be tolerant of others. The younger two seem to be at odds more than the older two ever were. Maybe it’s the combination of red hair and strong personalities. Either way, it doesn’t matter, because the room once filled with the teenage paraphernalia of my oldest two daughters is now a crisp blue and white, clean and ready for that foreign college student who wants the adventure of an American family.

It’s the end of an era, but the beginning of another…

Friday, September 7, 2007

September is Childhood Cancer Awareness Month...

Please watch this video on youtube:

Childhood cancer is HORRIBLE. Please consider helping in someway because of Joshua. Funding for research has been CUT. The type of cancer Joshua had is rare, so there is almost NO funding for research or clinical trials open for kids with the same type of cancer, who have relapsed and whose parents are desperate for a cure. I know too many children who have died.

Please consider writing your representatives or donating to curesearch or the LibbyShriver foundation or the Sunshine Project.

Thank you.

Thursday, September 6, 2007

The miracle of Joshua...God's way...

Once upon a time there was a woman who had four beautiful, exceptional daughters. And she was very happy. But she had a secret. Deep in her soul she longed for a son. So one day, she whispered her heartfelt desire into God’s ear.

But…being a woman who liked CONTROL, she decided to take matters into her own hands. Like Sarah in the Bible, she took charge by making plans of her own. Sarah had “Haggai”. This woman with the secret longing had “adoption”. After all, hadn’t she been sick with flu like symptoms and extreme exhaustion for nine months straight with each pregnancy? Why go through that again? Besides, how could she guarantee she’d give birth to a son? These questions could only be answered one way…through adoption.

With her husband’s agreement, they began to step through all of the doors that adoption brings. And before they knew it, along came a little boy. And even quicker than you think, he was in their home…their little boy. But something was wrong. The woman could not sleep. The woman could not eat. She felt a torment deep in her soul. Something was horribly wrong, but what? She was confused and unsure of what to do. Why was there no peace?

Not understanding what was happening, the woman and her husband decided to step away from the situation. With heartache and confusion they gave the little boy back. How had this happened? They had stepped through all the doors. They had been willing to be willing. What went wrong?

Unbeknownst to the woman and her husband, far, far away a small church congregation was asked by the grandparents of the little boy to pray, non-stop, against the upcoming adoption! The grandparents wanted to adopt the little boy themselves. He was their blood. This was the unexplained torment that the woman was experiencing; only she didn’t know it at the time. She didn’t find out about the praying church until two years later! Prayers are powerful.

Today that little boy is thriving in his grandparent’s home. He’s in school, has many friends and is much loved. What happened to the woman, who liked control, and her husband? Within one week of giving the little boy back, they discovered they were pregnant…with a son, and they named him, Joshua!

And the rest, as they say, is history!

Monday, September 3, 2007

Two women stood at a cross roads...

One day two women met for the first time as they stood by a swimming pool. They were similar ages…both women of faith…both in a daze. As they watched three children splashing and playing, they talked and their spirits connected as sisters. They understood each other, but they’d just met.

As young women they’d both desired to be wives and mothers. Both women had spent two decades, following their dreams, happy, content, knowing who they were and satisfied with life. But life had changed suddenly, unexpectedly with no real explanations.

The first women’s two children had grown up. They were adults now not really needing her anymore. She let them go, which every mother knows is good and right and normal, but not very easy. About that same time, her husband walked away from their marriage, abandoning her, trading her in for a younger, newer model. Two and a half decades of being together…over. Just like that. Naturally this woman was devastated. Who was she now? What was her purpose? What was she to do with the rest of her life? She still had so much to give. Where would God lead her? Her thoughts…travel the world, helping the poor and

The second woman had recently let two of her five children go, but she was still reeling from a childhood cancer diagnosis and treatment of her youngest. She’d spent sixteen years homeschooling, sacrificing, raising her children. But now she was exhausted emotionally, spiritually, wiped out from three years of intense medical situations. Who was she now? She was still a wife, but the dance with her husband had changed. She was still a mother, but now the medical arena filled most of her time. Homeschooling was impossible, but the school where her children would attend needed training on how to care for her youngest child’s medical needs. Could she train them? Could she trust them, letting her baby go? How would she fill her “free” time? Where was God leading her?

They cried together as they shared their lives standing by a swimming pool. They connected instantly two sister hearts whose lives had forever been marked in a single moment by someone else’s words…”I’m leaving you”…”Your son has cancer”. Standing there, talking, they looked up, the brilliant puffs of clouds were skirting across the deep blue sky, carried on the wind, shifting, changing as just as their lives had. They understood each other as only sister’s can. They gained strength from each other. They both knew God would lead them and they both knew they would be ok.