Monday, February 18, 2013

Timmy Tours the Big Apple wasn't exactly a tour of New York City, it was more of a whirlwind reconnaissance trip but it's all in how you look at it I suppose.

Jarret, Henry and I made an overnight visit to Memorial Sloan Kettering hospital to consult with a surgeon who specializes in sarcomas. We took the Amtrak to Penn station from Syracuse which was a very comfortable way to travel! After the exhaustion and emotion of traveling there, navigating the subway, and talking with the doctor (as well as dealing with the embarrassment of Henry spitting up ALL OVER the floor of the exam room), I could not imagine having to drive the five hours home. As I write we are speeding toward Utica on the train, and I am completely exhausted, so I ask your forgiveness for my poor typo-laden writing.

So, by now you must be wondering what we discovered during our visit and the answer is - not a whole lot.

The trouble is that sarcomas are a very rare type of cancer (we all know what a rare treasure Jarret himself is, so Timmy must have thought they would be kindred spirits, but I digress). Out of all the cancers diagnosed in the u.s. in a year only 10,000 to 15,000 are sarcomas. Then there are different types and subtypes of them, and since they are so rare, there just aren't enough numbers of cases to research treatment plans and formulate a protocol of sorts. Much depends on the type of sarcoma, where it is located and how involved it is in the tissue. From there you determine whether you have radiation, chemotherapy, surgery, and in what order these occur, all of which also depends on the type of sarcoma, where it get the picture. And in the field of oncology, there is much debate about all of this.

While the scans showed that the sarcoma cells have not spread so far, they could be there in too small a quantity to be visible. The samples from the biopsy are still being studied, so we are in a state of flux right now. The specialist today could not make firm reccomendations because we don't know the subtype of the cancer.

On Thursday of this week we are going to meet with a medical oncologist at strong hospital in Rochester to see whether he recommends chemotherapy and whether it should be administered before or after surgery. Then we will call the specialist in New York on Friday, by which time his pathologists will have determined what they think is the subtype, and see what he has to say.

Then we will determine where we will proceed with treatment - Strong or Kettering. And of course, in the meantime we will be praying like crazy for discernment to know God's will.

Thank you for your prayers, your love and your support. Without them we would be adrift at sea.

With love,

Monday, February 4, 2013


The scans are clear. The cancer has not spread to anywhere else in Jarret's body. Your prayers have worked. Please keep them coming!

Tomorrow Jarret will have a core biopsy so that they can accurately diagnose Timmy's stage and grade. The results will available in about 3 days or so, and then they will decide the rest of the course of treatment. We have been told that he will have about six weeks of external beam radiation therapy and then they will remove Timmy, hopefully never to return!

It has been amazing to hear from all of the friends and family who are praying, and who have asked others to pray for us as well. I have heard from people in Brazil, Australia, and all over the country. Thank you for storming heaven for us!

Many of you have also expressed concern and offered help for Henry. I feel I should clarify that Henry is very healthy, gaining weight, happily breastfeeding, filling diapers on a regular (and frequent!) basis, and seems to be the picture of health. Most babies who have MSUD are very sick within one to three weeks of birth. So, we are thinking that this is a lab error, but are taking the extra precautions of doing all the extra testing just to make sure.

I have so many more thoughts I would like to share with you, but the kitchen must be cleaned up, the baby needs to be fed, prayers said, and cheeks kissed goodnight. Please keep praying, and know that we are asking God to bless each and every one of you.


Sunday, February 3, 2013

Introducing...Timmy the Tumor

It all began with when Super Dad appeared for Silly Time. This happens most nights in our home in that tired space between dinner and bedtime, when Daddy is feeling festive (bedtime is near!) and the kids are anxious to put off the inevitable (bedtime is near!).

Two years ago now, Jarret invited all the kids to get on his back for a lift upstairs to bed. Yes, all five. Super Dad would carry ALL the kids up to bed in one trip! With the first step up the stairs he knew it was futile, as his thigh muscle protested and he cried out in pain. He dumped the children off and ushered them up to bed and we forgot about the whole thing.

 Until a couple of days later when Jarret, rubbing a spot on his upper right thigh, told me his leg was really sore.

“Well,” I responded, “You probably pulled your muscle trying to take all the kids up the stairs the other night.”

 “Yeah, probably,” he agreed.

 “Just take some Tylenol or something,” I suggested and went back to stirring dinner.

The spot continued to hurt him, so he began a months-long journey through chiropractor, physical therapist, family doctor, different chiropractor, all of whom agreed with our injured muscle theory. The spot would hurt him on and off throughout the day depending on his activity; more if he had been climbing a ladder all day doing a handyman job or moving wood up and down stairs to fill the pile by the basement furnace, less if he had only been teaching or relaxing. As time passed, it started to hurt him as he slept, often causing him to jump out of bed in a panic, frantically trying to stretch out the cramping muscle. He would be up for hours massaging the spot, warming it with a heating pad, calming it with an ice pack, trying to alleviate the pain with Tylenol or ibuprofen, medicated sticky pads, or arnica gel. All the while, the spot slowly grew from what felt like hardened scar tissue into a definite lump.

You might be asking yourself why we didn’t go to the orthopedist at this point. But the answer would be that we had a lot going on – my sister died suddenly from complications of Lyme disease, we spent a summer traveling, I began a successful run up the Mary Kay career path, Jarret was busy gardening and running a handyman business in the summer and keeping us warm with wood during the winter.

Then I became pregnant unexpectedly with our sixth child. I had been having some problems with depression and anxiety since I’d become a mother, which worsened after my sister passed, and another pregnancy aggravated my symptoms. Being a strong and selfless man, Jarret just pushed through the pain and dealt with the sleepless nights.

Several months ago I asked him, “It’s not a tumor is it?” And he waved me away, “no…tumors don’t grow in your muscle. You think everything is cancer!” He was teasing me, and I listened, comforted by his confidence. He was right after all, with my anxiety I tended to be a bit of a hypochondriac. We were both overwhelmed with life as it was. And, as we have discovered, it is rare to have a tumor in your muscle.

 The holidays came and went, and with them a very stressful wait for the arrival of Baby Henry. His birth was beautiful, at home, as we planned. It was a special time for Jarret and me that I will always treasure in my heart. Shortly after Henry arrived I began a course of treatment with natural progesterone that alleviated my anxiety and depression. For three weeks, everything was rosy. Instead of feeling trapped and worried by everything, I felt excited about life and all its potential. Since I hadn’t felt this way in years, I was overjoyed and Jarret was relieved and happy to have back the girl he married. But he was still awake most nights, dealing with a throbbing thigh.

 Two weeks ago our chiropractor finally agreed with me (I had asked her if she thought it was a tumor and rather than dismissing me, she assured me that if nothing improved in the next few treatments she would send Jarret to an orthopedist). Jarret came home and said he was going to get it checked out and then proceeded to forget about making the call, busy with immediate things like dirty diapers and chicken chores. Finally, after the Martin Luther King Jr. holiday, I called the orthopedist that had taken care of Jack’s broken collar bone. They could get him in that Thursday.

 Jarret called me from the orthopedist’s office, “They want me to get an MRI right now.”

 I knew then, I had been right about the tumor.

While he went to get the test, I texted our family doctor, who is also a friend of ours, and updated him on the situation. The orthopedist is an old friend of his and he promised he would call and get the details and let me know. The next day he shared the news that it was a tumor and though it didn’t look dire, it didn’t look good either, and we needed to act immediately to get it looked at and taken care of.

 We had to go meet with the orthopedist to get the official news, so I made some feverish phone calls to find someone to watch the children so I could go with Jarret to the appointment. It took us longer to drive to the office than to receive the news in a matter-of-fact way from the doctor.

“You have a soft tissue sarcoma. It doesn’t look good and it needs to come out. We are making an appointment for you with an orthopedic oncologist in Rochester for Monday. Any questions?”

 I nursed the baby and Jarret looked at me.

 It turns out I had a lot of questions, but none he would answer, as he insisted he was not an oncologist and he could not answer anything about cancer or treatments and such. So, we headed home. It was Friday afternoon and we had all weekend to let our minds wonder on what this could mean for our lives.

 We shared the initial news with our parents, children, and prayer-warrior friends, and researched the internet a bit. One always ventures onto the internet with a health concern with caution. It didn’t look good. So much depended on the type of tumor, whether the cancer had spread, and where it was located. We knew none of this information.

 On Monday we met with the P.A. in our orthopedic oncologist’s office. The oncologist himself was out of town but our situation was urgent enough that we needed to be seen and get the process started as soon as we could. Meanwhile, I received a letter from the state that Henry had failed a newborn screening test that suggested he might have a genetic disorder called Maple Syrup Urine Disease, Reagan got the throw up bug, and I came down with a nasty cold. It never gets boring at our house!

 On Thursday we met with the radiation oncologist, Friday Jarret had a PET scan and a CT scan done. While he was doing that, I was on the phone with the insurance company and Memorial Sloan Kettering cancer center in New York City about getting in to get a second opinion on his diagnoses and treatment. I also heard from the oncologist that his biopsy is scheduled for Tuesday, February 5, the day before he turns 39.

 What we know so far is that sarcomas are a rare type of cancer, being only 1% of all diagnosed cancers. There are several types of sarcomas and what is so dangerous about them is that the cells can move and set up shop anywhere in the body. Some start in a limb, as in Jarret’s case, and move to the lungs. They don’t respond well to chemotherapy and are usually treated with a course of radiation to kill any cancer cells around the tumor, making a clearer margin for the surgeon when he removes the tumor. Radiation does not shrink these, and at six centimeters, Jarret’s is the small side of medium. The radiation oncologist said he thinks it is a high grade tumor, just based on the MRI, but he could not speak to the stage of the tumor. And he reminded us that this all needed to be confirmed by the scans and the biopsy. Those results will be in on Monday, and the results from the biopsy will be ten days from Tuesday. So, we wait, we hope, and we pray.

 Jarret has met the challenge with his characteristic brand of humor – he named the tumor Timmy and tells me that he can’t do this or that because he has cancer. We laugh hysterically and crack jokes about it because, well, what else can you do? And we have assured the children that everything is going to be fine, because we have faith that it will be. In our hearts, we know that all things work to the good of those who love God.

 All of you friends and family members have been wonderful with your concern, support and offers of help. We know you want to know what is going on and what we need, but as much as we would like to we just can’t spend hours on the phone or texting or emailing. So, I decided to resurrect the blog and use it as a place to keep you in the loop. I am looking into a way that you can register your email so that you are notified when I post an update. If any of you have any advice or expertise on a free or cheap service for that, please let me know!

 We are keeping a list of all the offers of help, and will call when we know what we need. Since we are still in the discovery process and everything is rather last minute, it’s hard to line things up ahead of time. If anyone wants to come help me clean or do a bit of laundry, I can always use help with that! You all were so wonderful with meals and support before and after Henry’s arrival, it seems silly to be in need of your help again. Rest assured you are in our prayers daily and we know we will soon be free of cancer and can return the favor when you are in need.

 I am at peace, knowing that God is allowing this suffering so that we can grow in our trust of Him. And I know He will take care of us. So, that brings you up to speed, so to speak, on Jarret’s situation. I will post again when we know more. Until then, I am yours,