Monday, April 25, 2011

Taking the Bad

Many of you are probably wondering what happened to the ongoing series detailing our journey in China to adopt Maire. The time has come for an explanation.

Our year started off with the grandest of blessings when we were finally united with our daughter, Maire. Needless to say, going from a four person (and two dog) family to a five person family added a lot of stress and grabbed a lot of attention away from writing projects, but I was earnestly attempting to chug through it all. Then, we received some bad news that took my attention away from telling our story all together.

At the end of February, my father visited the doctor for a CAT scan. He’d been feeling unwell since last summer and had been visiting doctors since July trying to figure out what the problem was. They thought it was related to his asthma, since it pretty much seemed to be just his breathing that was affected. They took an x-ray that revealed nothing out of the ordinary. They tried switching his asthma medicine, nothing doing.

Then in December he caught a cold that he couldn’t shake. The doctors stepped up their investigation with a video probe of his throat that again revealed no irregularities. So, finally the CT scan. That revealed tumors that looked cancerous on his kidney, lung, and liver. He was eventually diagnosed with kidney cancer.

At that point in time, he was still feeling rather well, except for his breathing problems. He was skiing on the weekends, working daily, and doing everything he had always done. He was as bright and vibrant as ever on the outside. He was most likely feeling a little worse inside than he was letting on, but with all his activity, he still appeared near the pinnacle of health.

He moved quickly into the process of managing his illness and working toward a treatment that would be effective in fighting off the cancer. Had it only been on his kidney, the solution would’ve been simple and easily treatable, but that was not the case. The doctors were still very optimistic, however.

Unfortunately, just as he started his cancer treatments, he had a surprising setback in his health. Near the end of March, the pain caused by the damage the cancer cells had done landed a debilitating blow. He proceeded with the cancer treatment, but his turn was so dramatic that he went from skiing one weekend to barely functioning just two weeks later. That was when I first visited Maine this year.

I went out on March 26th. My mother was worried the end had come. I needed to see my father before the worst happened. I hadn’t mentioned what was going on to many of my friends and acquaintances because it was all so sudden. I didn’t know what to say through our shock.

When I was home during that last week in March. It appeared our worries might have been premature. After my arrival, my dad bounced back from his low point. It appeared as if the cancer treatment might already be having an effect. My mom didn’t know what to think. She had been very scared and prepared herself for the worst. Now, he was beginning to act and even look a little like his old self again.

I had seen him on his best days since the setback. I wasn’t willing to proclaim my mother’s worries as premature, but I was willing to hope that maybe he’d turned a corner that could lead to recovery.

I returned to my family in Missouri. We were still in the midst of a major transition with the addition of our Chinese surprise. I guess she wasn’t really much of a surprise, but everything we were going through with her was. Maire's own medical history is such a mystery that we’re having to learn much about her by trial and error.

One error we made was taking her off her anti-seizure medicine. We woke up one Friday morning in April to find her having a seizure; just days after we’d stopped her meds. We spent a harried day in hospitals and ambulances to learn not much of anything. One questionable neurologist chalked it up to febrile seizure with not much use in terms of treatment and a request that we get an MRI. Our pediatrician was a little more concerned to hear exactly what had happened and felt that, although the seizure was accompanied by a fever and she herself was not a neurologist, it did not sound like a febrile seizure to her. We were happy to put her back on the anti-seizure medicine.

Many of her physical behaviors have improved since we put her back on her meds. We may be looking at some form of epilepsy, but at least we’re treating it and working toward finding out more. She has an MRI scheduled within the next few weeks and we have physical, occupational, and speech tests in store for her this week so we can get her going on any therapy she may need to get up to speed with where she should be at this point.

Meanwhile, my mother and father were visited by a parade of family members and friends. This may have been a little overwhelming for my mother, but it helped with dad’s spirits.

Not long after I left, however, dad’s progress slowed and soon he was having trouble managing his pain. The pain medication and the tumors were causing a bowl obstruction that had to be cleared before any progress could occur with his cancer treatment. They took him off his cancer pills and he was admitted to the hospital. The obstruction was cleared and once again he began to bounce back.

He stayed in the hospital until they could work out a better pain management program. He was released back to home care and they made an appointment with the oncologist to work out a new cancer treatment that would work with his pain management.

The day of the appointment Dad had another very bad day after a few days of getting progressively worse again. It was agreed between my father, mother and the doctor at that time that dad would enter Hospice service. For those of you who haven’t had the pleasure of going through this with a family member, Hospice care is begun when a patient has six months or less to live. In dad’s case, they could not find an effective pain management course in time to begin an effective cancer treatment before the cancer had done too much damage to his system. The goal of Hospice is to make the patient as comfortable as possible until death. Treatment of any disease is abandoned at this point and all ongoing treatments are designed purely for comforting the patient. This would be done at home for environmental comfort.

At first my dad was still outwardly optimistic when agreeing to Hospice. He told me, if he should turn around, he could try the cancer treatment again. But, Hospice is not designed to turn the patient around. This was a bad sign.

My dad was still able to move around with a walker at this point and he enjoyed his granddaughter Clare’s third birthday party on Saturday, April 16. By Friday he needed assistance to get up and down and he lost much of his ability to communicate.  He can still comprehend everything but has trouble getting any words out to express what he’s thinking.

It seemed the end was nearing rapidly. I decided to leave my family in Missouri so I could be by my mother’s side during this trying time. She was doing most of the care work herself, and despite my brother’s commendable efforts in assistance, she needed someone else in the house with her.  Staying in 24/7 is easier for someone who lives a long way away than for someone who just lives across town.

My mom tried to tell me not to come because my family needed me. They do. But, right now we felt my mother needed me more. I didn’t want him to go while mom was alone, and I didn’t want him to go without being there.

The flight from Kansas City to Boston on Sunday was quick and eventless. My good friend since grade school, David Russell, came down to get me from Logan Airport. I arrived home to for the second time this year to a broken father and a mother whose relief that she wasn’t going to be alone this week was visible.

This is hard to write, but writing is often cleansing to me and this is easier than having to explain it to everyone individually. The speed of his decline has been a shock to anyone who knew him. It’s difficult to comprehend. I can’t help anyone do that any better than I can myself.

My father is dying. I’m sorry I haven’t opened up about that earlier. I know you all feel so sorry for my family and me. But, that’s not why I’ve written this. I wrote this because my father has affected anyone who ever knew him. He’s the most likable man I know, and I know many of you will want to know what happened.

He doesn’t have much time left. I wanted to get this out before it was over to perhaps lessen the blow for people who may not have heard anything about this until now.

This is my family blog, and it’s supposed to be about everything, not just the good. When we’ve gotten through this, I intend to continue to chronicle our journey to Maire. Like so many choices we make during times like these, I wonder if posting this is the right thing. Since you’ve got to take the good with the bad, I think it is.


PolkCountyEMA said...

Praying for you and your fam!

PolkCountyEMA said...

Oh ha that comment should have been from Nicole, guess Robert was signed in with his work account.

Anonymous said...

sending you and your family lots of love andy.
xo nini

Amy said...

Thanks for sharing this Andy, especially the details of the last week or so. I am glad you have been able to come back to Maine and we are keeping your Dad and your whole family in our prayers! Your Dad is incredibly likable and I have missed talking with him on Sundays about you, Angie, the boys, and Maire. Your Dad definitely loves his family!!!