Archive for the ‘Radiation’ Category

Six Months After Treatment
July 31, 2011

From James:

Almost six months ago, So Young completed radiation treatment for her brain tumor. The doctors have told us that the radiation does its work for six months or so after treatment ends. That is to say, if it is going to destroy tumor cells, it will do so not only during treatment but up to six months afterward. Of course, it has longer lasting effects as well, such as possibly stopping or slowing the growth of the tumor. Radiation can add years to a person’s life, so it’s a big deal.

Here is how So Young is doing six months out:

  • Vision — The same or perhaps slightly better. Certainly, her light sensitivity has decreased. The black spot in the middle of one eye has dissipated, although in both eyes everything is still obscured with “static.” No driving. Reading only with great effort. (But she has become a big GodTube nerd. Go figure.)
  • Seizures — So Young used to experience some auditory and visual hallucinations that possibly indicate focal seizures. These have decreased significantly, and she is going to be entirely off Keppra, the anti-seizure medication, in about a week. Then she will be completely drug free, also a big milestone.
  • Memory loss — So Young thinks she still has trouble with short-term memory, but it doesn’t seem to be anything life-affecting. It could just be confusion caused by a loss of eyesight and MOTB (Mommy on the Brain) Syndrome.
  • Balance — She did better on her balance test the last time she saw the doctor. She couldn’t walk in a straight line foot-to-foot very well before. That could also be a vision thing.
  • Hair loss — All the hair she lost from the radiation is growing back quite well — same color, same texture.

I can’t immediately think of much else. Basically, it’s all about vision, vision, vision.

Psychologically, So Young is handling everything remarkably well. Several people (including me) have observed that she doesn’t complain much. She also isn’t often depressed, although I wouldn’t say she is never sad.  If anything, she has a lot of joy and renewed purpose in her life. She jokes and laughs a lot. She has these amazing divine encounters with other people. Strange coincidences that can only be explained by God happen to her. She has so many wise things to say right now. She is living life with a keen understanding of its fragility and therefore what matters is in the forefront for her now more than ever. I married well.

So Young and I are asking that everyone who believes would continue to pray that her vision will come back and that the brain tumor will shrink. So Young wants nothing short of a miracle. The end of radiation gives God a chance to do a miracle without people crediting it to medicine.

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So many prayer requests for others:

  • I mentioned Pannie’s mom on the blog before, how she was suffering from cancer. She has passed away.
  • Our dear friend Elaine, very recently married to KT, is recovering from surgery and awaiting the results of a biopsy for a tumor that was removed.
  • My cousin Elizabeth’s unborn baby has been diagnosed with Edwards syndrome.
  • My grandfather has been having some health issues recently. He is in his 80’s.
  • A church member’s daughter is back in the hospital.
  • Thomas’s dad died last week.
  • ABC’s Haiti missions team is serving in earnest starting this week.

There are many needs unmentioned above. We’re praying for them, and if you think of it, please pray too!

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Four Months After Treatment
June 6, 2011

From James:

So Young’s radiation treatment ended about four months ago, on February 2. It’s hard to believe that it has been almost 7 months since the original diagnosis on November 12, 2010. I have good news to report!

So Young’s appetite has returned to normal. Before, foods tasted strange to her, and she often didn’t feel like eating. These are common side effects of radiation treatment. Now she is able to eat three meals a day.

The severe fatigue she once experienced has diminished as well but has not gone away completely. Feeling very tired is also a side effect of radiation, one that we would expect to improve 3-6 months after treatment is complete. She still feels tired more than I would characterize as normal, but she is able to get a full night of sleep and stay awake for most of the day without feeling exhausted. I write this, however, even as she has had another bout of severe tiredness this morning, so I wouldn’t say that she is over this issue.

The fact that these symptoms have improved shows that most likely the loss of appetite and fatigue were symptoms of radiation itself rather than the brain tumor directly, medication, or one of the myriad other possible causes. Still, each week and even each day varies, so I’m monitoring the situation closely at all times for changes.

So Young’s hair is most decidedly growing back. There was a time early on when we thought (wrongly) the hair loss was going to be permanent. We later learned that it is most often temporary, so compared to our original misimpression, this is great news. She basically lost her hair all the way around her head and in a spot right above her forehead. It is all growing back now with dark, fine baby hair that we assume will become more like normal hair later on.

So Young’s vision is unchanged. She had a very bad day last week when she felt like she was going blind, but it has stabilized again. She said everything was turning completely white on that day. Her eyesight varies day-to-day. There is no clear reason why. She describes it as “static” or a “haze.” She has trouble recognizing faces. She reads things on the Internet using her iPad, which she finds useful for zooming into text. Zooming in doesn’t make things clear. It just increases the size of the blurry objects she is looking at.

I had a checkup with our optometrist this week, and based on a recommendation from our good friend Lucia, asked if there was a way to correct So Young’s vision. We had assumed that there wasn’t, because no doctor had mentioned it so far and her eyes and optic nerve are in perfect condition. The problem is that her brain can’t process what it is receiving from her eyes. Still, it never occurred to us to ask, so I did, and they said that they can’t make things clear, but there is a lot of technology available to magnify objects near and far, such as telescopic eyewear. I am bringing So Young in during early July to investigate further. The doctor said it is a matter of trial and error. So Young has a great sense of humor about it and jokes about how she is going to look big, thick glasses that magnify her eyes to 10x their size.

First Follow-up Appointment and MRI
March 21, 2011

“Have I not commanded you? Be strong and courageous. Do not be afraid; do not be discouraged, for the LORD your God will be with you wherever you go.” (Joshua 1:9)

From James:

Short Version: Another long day in Baltimore — our first in 6 weeks. Today’s MRI showed no tumor growth, which is good news.

Long Version:

Today was our first MRI and follow-up after radiation treatment ended on February 2. It was an all-day affair. We departed at 7 a.m. and arrived home at around 5 p.m. The MRI appointment was in the morning, and the actual meeting with the radiation oncologist was at 1:30 p.m.

The MRI was as routine as such a thing can be, with So Young falling asleep on the table, which is probably the best thing you can do during an MRI, because it facilitates sitting still.

We had some time to kill between the MRI and the consultation, so we took the museum tour of Johns Hopkins. There is an area under the hospital’s famous Dome that contains various portraits of benefactors and famous doctors, along with a bust and portrait of Johns Hopkins himself and a 10′ tall statue of Jesus.

People write prayers or thoughts in two books in front of Jesus. We wrote our prayers as well. The sculpture is about to be covered up for renovations, so we were lucky to see it. It is surrounded with scaffolding right now. I had to take this shot from beneath it, behind the scaffolding — hence the cut off hands.

Jesus at Johns Hopkins

Here is the inscription on the pedestal. (“COME unto ME all ye that are weary and heavy laden and I will give you REST.”)

Inscription

 Ever wonder what Johns Hopkins (the man) looked like? Grouchy.

Johns Hopkins (the Man)

We later ventured to a different part of the hospital (the Blaylock Building) to see the portrait of Vivien Thomas, an African-American heart surgeon and unsung hero at Hopkins who was crucial in discovering new surgical techniques for treating “Blue Baby Syndrome.” So Young and I are watching a DVD that Ellen let us borrow that tells his story — Something the Lord Made. Seeing all of these monuments made us all the more convinced that we picked the right hospital for So Young.

OK, so enough about the tourism.  (Like I said, we had time to kill.) We finally had the follow-up with the radiation oncologist, Dr. Kristen Redmond. First, we consulted with one of the residents, who asked questions about her current condition and performed basic tests of her neurological function (touch your nose, etc.). He danced around a bit about the new MRI, so as we waited for Dr. Redmond, So Young started to get nervous, but the news was good.

The brain tumor does not appear to have grown. It is the same size it was in the original MRI taken in November. It didn’t shrink, either, which I suppose would be the ideal outcome, but we still have several months for that to occur. They normally do not shrink. There are a few areas that “lit up” on the MRI, which would usually indicate fast-growing (“malignant”) cells, but Dr. Redmond said that that is expected so close to radiation and isn’t necessarily indicative of bad cells. Overall, Dr. Redmond summarized the situation this way: “It is as good as can be expected.” We will return again in June for another MRI/follow-up combo.

We can expect to go every three months for the next two years, and then every 6 months for years 3 – 5. After that, the MRIs will become annual events.

With regard to So Young’s symptoms:

  • Her eyesight may be unchanged or may have improved. Today she said she saw Dr. Redmond’s face for the first time. She has lost most of the light sensitivity that she had before, so no more sunglasses indoors.
  • She has some difficulty with short-term memory, which is normal for radiation patients.
  • She is more tired than before, but that could be caused by a lot of things, including proximity the radiation treatment and the anti-seizure medications she is on.
  • No headaches. No visual or aural hallucinations, which she was having pre-radiation and during the early radiation days.
  • Mild balance issues.

Thanks to everyone for your continued prayers and well-wishes, in person and virtual. We are so grateful for all of you and wish we could repay you for making such a difference in our lives. We send you our love as we continue on this race.

Here’s a picture of So Young before her first marathon. (She’s the one on the left…:-) ) She isn’t letting me post any recent images of her. Isn’t she beautiful? So glad to be hers. I know many are glad to know and love her, too.

So Young

Anticipating Monday and Typical Kindnesses
March 20, 2011

From James:

So Young’s first follow-up appointment and MRI after radiation treatment takes place tomorrow. I would say that we are waiting for this appointment eagerly, but it is with mixed emotions. The doctor has already told us that the tumor will likely look “angry” on the MRI, so it probably won’t be encouraging to look at, although of course it might also have retreated by that time.

Meanwhile, So Young has increased her dose of steroids to 2 mg after weaning to 1 mg, and now she is not experiencing headaches in the morning, with seems to prove that the headaches were the result of radiation-induced swelling. She is sleeping a lot more these days, almost to excess, as she was starting to do in the weeks preceding radiation treatment. I suspect that it is caused by the tumor itself. Some types of brain tumors are known to cause tiredness. Hers is in the thalamus, which affects the sleep cycle. And then there is the fact that she just recently got blasted with radiation, which can be tiring.

Yesterday was a typical Saturday at the Gage household — typical primarily in the kindness we received. Dad, Ka-loon and Sam (from church), and Ricky (our neighbor) came over to fix a falling fence in the backyard, which turned out to be a project within a project within a project that won’t be entirely complete for a few more weeks. Dad was the foreman for the job, always more than up to the task (he was made for this kind of stuff). Everybody gave many more hours than they probably anticipated but seemed glad to help.

While they labored away, we went to So Me and Jeremy’s house for Jacob’s 100 day celebration, a Korean tradition, and had tasty Korean food. Later, So Young watched Jacob and Nathanael while their parents went on a date.

Just before we left for the party, we discovered that the minivan was not operational. After a failed attempt to jump it, we almost had it towed, but the tow truck driver got it running again, so I was able to drive it to the repair shop. It could be as simple as a necessary tune-up.

In the evening, Justin and Lauren drove all the way from Arlington with a delicious, home cooked dinner for us. We invited them to stay and help us eat the meal they prepared. We have done this a couple of times with people who brought food, and the reaction we get is priceless. It’s an awkward suggestion. The (understandable) reaction is sort of like this: “You want us to eat the food we brought for you?” But it turned out well, allowing us to get to know this delightful couple much better than we otherwise would.

We talked a lot about our years at Ambassador Bible Church, which will be 14 this summer. So Young and I later reflected that we saw ourselves in them, as a young couple just starting out.  We didn’t know how things would turn out then — three kids, a lot of ups and downs, best friends even now. We still don’t know how things will turn out in a lot of ways, but we know that despite all the change, good and bad — like Lindsay prayed last night before bedtime — “God is good, all the time.” Yesterday was still more proof.

First Week After Radiation
February 11, 2011

“‘I will not leave you as orphans…'” — Jesus, John 14:18

From James:

This was the first full week without radiation. (Radiation ended on February 2.) We are adjusting to a new routine at home. The trip back and forth to Baltimore made us long for the way things were before the diagnosis. Well, I suppose we would long for those days regardless, but it is comforting to have a routine that does not involve getting irradiated.

So Young is resuming activities that she hasn’t been doing regularly in quite some time. Since treatment has ended, she plays a very active role in getting the kids ready for school every morning. She has started making everybody’s breakfast and packing lunch for them. I help, although I have to admit that I am now spoiled in this regard. I drive the younger kids to school, and Mom picks them up. So Young often makes dinner for the family, but I am making dinner more often now and am actually excited about the opportunity to cook more.

We are still receiving meals — twice a week or more — from generous neighbors, friends, and family. My work bought us a number of frozen meals from Let’s Dish that we are eating as well.

This week was rather busy, with So Young spending time with friends on most days. One difference between now and just after the diagnosis is that we don’t worry as much about her being home alone. In fact, she enjoys it, because it gives her an opportunity to rest and organize things (she has become a big organizer). She also tries to get a run in every day. Training for the half marathon starts February 21!

So Young is in good health generally. Her major symptoms are vision loss from the tumor  and tiredness from the radiation.

Her vision is still quite bad. She can’t drive (of course) and struggles to read and therefore usually doesn’t try to. There are signs that her eyesight has improved, however. With effort, she can read words with relatively small fonts. She can cook, although identifying the “done-ness” of meat is hard. My mom and I insist that So Young’s vision has improved, but So Young still thinks it is because she is just adjusting to her condition. She says that in the middle of her eye there is “static” and that there are spots of darkness. She says it’s sad but tries not to complain, which really is true. She might get frustrated, but she doesn’t whine about it at all. We are hopeful that in few months her vision will be restored.

So Young takes a nap every day if possible. When she can’t, she feels tired, and there is a cumulative effect if she lacks rest over a few days. The steroids she is taking also (paradoxically) keep her up at night. (One praise is that So Young is weaning off the steroids, which have helped in many ways but also have bad side effects.)

A lot of people ask how the kids are doing, and frankly they are doing great. There was  period where we had some difficulty, but the structure that my mother provided, along with firm discipline, resolved the problem for the most part. I don’t know that there are no psychological effects in the children, but they seem just about the same as they were before the diagnosis.

One quick anecdote to show how we’ve been blessed in this situation. I’ve told a few people about this. We have received a lot of money from our friends at Ambassador Bible Church and my workplace. We received a generous amount before, all of which was used to pay doctor’s bills. (I only use the money for So Young’s medical treatment.) More recently, I was taking an inventory of the amount I was about to pay, essentially outflow from my bank account to the various healthcare providers. I then added up how much I had received from the church and work: precisely the same amount I was about to pay to the doctors. If that isn’t a sign, I don’t know what is. It is as if God is saying, “Yes, I know this is hard, and sometimes you might feel abandoned, but I love you and am with you. You are not alone.”

Radiation Ends
February 2, 2011

From James:

Today was So Young’s last day of radiation treatment!

We spent Monday through Wednesday in Baltimore on a “retreat” of sorts that we planned early on, anticipating that So Young would be more tired than ever as the treatment concluded. Ending radiation is a huge milestone for us. It means so many things.

Ending radiation means that we have ended the major treatment phase of So Young’s illness. God willing, she will never undergo surgery, chemotherapy, or any other treatment for this illness. If she does, it will mean that the tumor has become fast-growing (i.e., “malignant,” although anything growing in the brain — slow or fast — is malignant), which is something we are earnestly praying it will not do. So this is it. This was the one shot we had to fight the tumor medically, although of course we still believe that God is the physician who can heal it no matter what is done medically. So Young was treated with the maximum dose of radiation (5,400 cGy) for the brain. It is highly unlikely that they would treat her with radiation again, and then only as a last resort. 

Ending radiation also means that our life gets to return to “normal” to some extent, or at least we are hoping so, although we all need to adjust to So Young’s visual impairment, should it continue. The good news is that her eyesight seems to be improving.

Finally, ending radiation means that we have a new perspective on God’s love for us, because we have seen many people standing up for us during this time. If anything, I consider it to be a wonderful argument (albeit on a small scale) against those who would condemn Christianity for the crimes committed in its name throughout history. All of the people who drove us were not related to us by blood, but related to us through Christ. They were acting out of compassion because of their beliefs — because of Christ living in them in a real, supernatural way. They are just as much our family as our parents and siblings.

So what is next? We are meeting with the radiation oncologist (Kristen Redmond) again in six weeks or so for a follow-up MRI and appointment. She said that So Young’s tumor is likely to look bad at that time — “angry” is the word that she used. The swelling caused by the radiation is likely to make it look big and fast growing, which won’t be true. It will take some time for things to subside (six months is the conventional wisdom), and then we will see whether it has become smaller. That is the hope, although most often that is not the case. Still, the very gradual restoration of So Young’s eyesight is a hopeful sign.

After that, we watch and wait. At first, an MRI is performed every three months. After perhaps five years, the MRIs become an annual event. For Grade 2 astrocytomas, we are generally talking years of watching and waiting, hoping that things don’t turn for the worse. This kind of monitoring is not unique to brain tumor patients. Cancer survivors of all kinds endure it with painful regularity.

Today was a very emotional day for us. The last three days, frankly, have been wonderful for us, realizing that this major leg of the race has come to a close.

At Hopkins, every cancer patient gets to bang a gong that they have in the facility when radiation treatment is over. Everybody applauds when you do it. There are cheers and hugs and good wishes from everybody. So Young asked how many times she could hit it. Usually the patients hit it once. The nurse said, “As many times as you want!” So Young must have hit it a dozen times.