Saturday, May 19, 2012

Strength of an Egg

I saw this a while back, and recently came across it again. It describes perfectly how I feel.

Parents of children with cancer, or really any serious condition, are often referred to or viewed as having strength “like a rock.” Albeit flattering, it isn’t quite true. It is more like the strength of an egg. An egg, you ask? Yes, an egg. If you think about an egg, you will see the point I make.

An egg has a polished smooth outer appearance with no cracks or weak spots visible. It seems almost inconceivable that the inside might not be as smooth and solid as the outside. Most children, at some point in their lifetime, are shown the famous egg trick. An egg set at just the right angle can withstand enormous amounts of pressure and cannot be cracked or broken. Yet that same egg, tapped gently at an even slightly different angle will break. The contents, once so neatly concealed inside, will come spilling out, and the no longer perfect shell will be crushed. Then the shell looks so fragile that it seems inconceivable that it ever held any strength.

That is where parents of children with cancer are more like eggs than rocks. A rock is solid all the way through. If you tried to break a rock, it would be almost impossible. If successful, one would find that there was nothing inside but more rock. It takes a lot more than pure hardness to hold the hand of hope. These parents are not solid all the way through. They hurt, they fear, they cry, they hope. It takes a very careful balancing act to keep the shell from being shattered.

Balancing an egg while running a household, going for doctor visits and hospital stays, keeping the family together, and holding on to the constantly unraveling ties of your sanity can be very tricky indeed. Occasionally, the angle will be off and the shell will break, shattering hope and the neatly secured appearances of a truly fragile existence. Unlike Humpty Dumpty, though, parents of kids with cancer will pick themselves up and put themselves back together again.

~By Juliet Freitag

Friday, May 18, 2012

It's been a busy two weeks since we were told that Collin has four to five new tumors in his brain and he was restarted on the maintenance drug therapy. He is tolerating the medications very well, with no nausea or other side effects. He is a typical three-year-old...full of energy, always on the go, testing limits, and asking questions. You know that question that all pre-schoolers ask: "Why?" Collin has started asking it, often. Recently one evening, I called him over to take his medicine, and he said to me, "Why I take medicine?" I was totally taken aback. I said, "To make you healthy so you can live a long, happy life." He took the medicine, and as he walked away to go back to playing, he said "I feel good!" This week, he also asked me, "Why I go to speech therapy?" I said, "Well, you know how you get frustrated when we can't understand what you're trying to tell us? You go to speech therapy to help you learn to speak more clearly, so we can understand you better." Collin has enjoyed returning to his therapies, and this morning when he asked me if we were going to therapy and I told him that he didn't have any appointments today, he cried!

All three of his therapists notice improvement since they last saw him in February.  His occupational therapist agrees that his right hand is stronger and that he is using it more; he still needs help with things like motor planning and ADLs.  His physical therapist noticed improvement in his walking, but he still needs to work on things like balance, running, jumping, etc. His speech evaluation showed that he's where he should be for his age as far as what he understands, but because of his difficulty planning and coordinating the movements necessary for speech (apraxia), his ability to speak clearly enough to convey what he wants to say is below the level of a two-year-old. As his speech therapist said, we need to work on his speech more than we do his language. She also does not feel at this point, since it's been two years since his brain surgery, that he will regain any more movement on the right side of his face. I wasn't surprised by any of this, but it was still sad to hear.

Earlier this month, the wonderful Knights of Columbus in Lower Paxton Twp. held a roast beef dinner fundraiser for Collin. Once again, we were humbled by the support of everyone who worked hard to make the event happen, and those who came to show their support and have a delicious dinner! It is very difficult to find the words to express how much we appreciate the support of family, friends, and the community. We are truly grateful!!

This past week Collin was featured in an article in a local paper in conjunction with a Four Diamonds Fund fundraiser we are speaking at this coming Thursday. This will be our first time at the event, called Kuppy's Cruise In. With Neya's help, Collin will have to choose his favorite car or motorcycle. Then we will share Collin's story, talk about the Four Diamonds Fund, and present the winner with a plaque. It will be a fun evening!

The next two weeks leading up to the MRI on June 1 will be just as busy as the last two weeks, but that's probably a good thing. I'm trying hard not to think about the MRI, or my fears...

5/10/12 - Neya & Collin

5/12/12 - Neya's First Communion

"Haha cancer, you're not getting me down!"

The label on one of Collin's meds...kind of an oxymoron, don'tcha think?

Friday, May 4, 2012

Friday, May 4, 2012

Today we met with Collin's oncologist and neurosurgeon at Hershey to get their input on Tuesday's MRI results. I guess I expected them to talk about the chances that the suspicious area was inflammation versus tumor. There was no way in a million years I expected what we were told.

Collin's neurosurgeon reviewed the MRI from Tuesday, and compared it with MRIs from the last eight months. Not only is he certain that the area in question is recurrent tumor, he said there is a total of four to five tumors in different areas of Collin's brain. In previous MRIs, the areas that are now tumors were not yet big enough to see or be questionable.  So it seems as though the 3F8 treatment wasn't effective, and now that Collin has been off the maintenance therapy that he did for six weeks before stopping it to do the 3F8 treatment, the tumors have had time to grow.

So, tonight Collin has gone back on the maintenance therapy. He will have another MRI on June 1. If that MRI shows improvement, he will continue on the maintenance therapy. If there is no improvement, or God forbid, the MRI is worse, Collin will go back on  more intense chemo, like what he did last November. In the meantime, we will begin looking into cranio-spinal radiation.

Tonight, I am in shock. Terrified. Heartbroken. Angry. Disappointed. Nauseous. My heart is in my throat, and it's hard to breathe. I can't focus on anything. I look at Collin's sweet face, listen to his infectious giggle, and wonder how the hell I will survive if he's ever taken away from me.

Tuesday, May 1, 2012

Tuesday, May 1, 2012

Collin had his MRI this morning, and we met with the doctor this afternoon to review the results. They weren't what we wanted to hear.  The doctor called the MRI "suspicious." It seems there is a new spot, in a new location, that wasn't there before. The problem is, the area doesn't enhance, which means it doesn't get brighter with the contrast dye. So, they're not sure if it is a new tumor, or if it is just some inflammation from the 3F8 treatment in March. So, over the next few days and weeks, the doctors will be gathering the information that will help us decide what to do next. They sampled Collin's CSF through the ommaya reservoir to see whether there are tumor cells present in it, and will let us know the results tomorrow. If there is enough frozen tissue left from 2010, they will test it for the protein needed for a treatment similar to what he did in March, called 8H9.  If his original tumor has the protein, we will move forward with the 8H9 treatment. If not, we may be looking at restarting the metronomic therapy he did before the 3F8 treatment, and then doing cranio spinal radiation sooner than we had hoped. Collin will have another MRI in 3 to 4 weeks to keep a close watch for any any further changes. Needless to say, I'm scared to death, yet again. I just can't believe this is happening. I don't know how I'm supposed to function over the next few weeks, just waiting......