Saturday, 30 March 2013

A Special Day

This week we managed to make it out of the house one day, and we used that day to take a very special trip to the Huntington Library. It was the boy's first trip there, and it was so fun to take them to a place that my parents and grandma had taken me, and that I have such fond memories of. We had a picnic, went through the gardens, listened to music, saw an exhibit on WPA art, one on botanical drawings, and one on the families that owned the land the Huntington sits on prior to the Huntington's purchase of it. We also ran into the European art galleries so that Tommy could see Blue Boy and Pinkie, which was the highlight of his day. Nic's favorite thing was playing in the fountain at the children's garden. It's hard to know what Kenny enjoyed the most, but probably getting to ride in the stroller...usually he gets stuck in the pouch.

Friday, 29 March 2013

Update on Mary: A Break From the C-word

For the next two weeks Mom does not have any medical appointments, tests, or anything else related to fighting cancer, because they are giving her body some time to recover from radiation. Thus, we have decided to take a break from cancer. We aren't talking about it. When someone brings it up, we tease them about breaking the moratorium. Mom is taking it easy, she is taking her medication (obviously), and she caring for her body the way she needs to, but otherwise we are basically pretending that cancer hasn't invaded our lives.

For the last year Mom, Dad, and the rest of us have had our lives consumed by cancer. We're tired, and we need a break. We need some normal. So, if you don't see an update in the next week to ten days, assume that all is well. I will be posting only if something goes wrong and needs extra prayer. In the meantime, please continue to pray that the cancer would not spread during this rest period (a big danger), and that the radiation would succeed in destroying her tumor. Thank you all for your prayers and continuing to stand alongside us. Have a very happy Easter! He is risen!

Sunday, 24 March 2013

I Hear It's Snowing In Chicago

I'm sorry.

Friday, 22 March 2013

Update on Mary: Radiation Complete - Now We Wait

Thank you so much for all your prayers- she made it! Mom finished up the last of her radiation treatments today. She did five total (W,F,M,W,F). She is feeling ok, but not fantastic. We will not find out any results for at least two months...which feels like a long time, but we have to give the radiation time to work.

The goal of this intense radiation was to penetrate through the thick outer crust of the tumor, and confuse the DNA of the tumor cells in the hopes that this will lead to their destruction. This will take some time, of course, which is why we have to wait so long for the results. In the meantime, Mom has to wait a few weeks to restart chemo because the chemo she is taking and the radiation don't mix.

Please pray:

That mom's stomach will start to feel better. The radiation has made her very nauseous.

That mom's cancer will be contained- since she has ceased chemo to do radiation any cells circulating in her body are not being stopped.

Please pray that her cancer does not spread during this period.

That the radiation will do it's work and that her tumor will be destroyed.

Thank you all for your prayers! We are so grateful for your continued support.

Monday, 11 March 2013

Update on Mary: Radiation Time!

If all goes according to schedule Mom will begin her first of five radiation treatments on Wednesday. She is getting the type of radiation we had hoped for! She still is battling a tiny fever, but the radiologist is not concerned about it and everything is set for her to start.

Please pray that her body will fight off the last remnants of infection, and that her radiation treatments will be effective. Pray that those little cancer cells will get blasted into oblivion. Pray that her stomach and all her other organs will be protected and undamaged. Also, please pray for mom's endurance through the course of the treatment. She is heading into it not feeling her best because of this lingering infection.

We know that she is going to be very wiped out from the treatments, but are so thankful that they are an option. Thank you all for your prayers. We are so grateful for them and for you!

Thursday, 7 March 2013

Update on Mary: One Year and Radiation Information

One year ago I was getting a haircut when my cell phone rang. I thought it might be Jeff calling, so I asked if I could answer it. It turned out to be my parents, and as I sat in the chair, my parents shared that mom had a very large, inoperable tumor on her pancreas. I sat numb through the rest of the haircut and drove home crying. As soon as I got home I hopped on the internet and what I found was not reassuring.

Patients with inoperable pancreatic cancer usually live less than a year, with a tumor as large as mom's average survival is only 10 months with treatment.

Mom's doctor did not give her much hope, except to say there was a small chance that chemotherapy might shrink her tumor and make it operable. Mom decided to go ahead and give chemo a shot. We knew that the odds were long, but we prayed that we might have a little more time with her, and you joined us in lifting her up in prayer. You prayed for the tumor to shrink. You prayed for her immune system to stay strong. You prayed for her body to function well again.

A year later mom is still here. Her tumor is roughly fifty percent of what it was, her body is fairly strong, and she is preparing to start a radiation treatment that was not even an option to her one year ago. There is even a chance that this radiation could destroy the tumor. A small chance, but a chance nonetheless. In the past year, she has fought hard against this tumor, and she has beaten the odds. Praise God!

I'm tired. I have dishes to do and laundry to fold, so I don't have time to enumerate all of the many blessings that this last year has brought or how thankful we are that Mom was there to share in them, but I so wish I did. Highlights include the arrival of two new grandsons, Emily's engagement, the announcement that yet another grandchild is on the way (Kevin and Colleen), another Christmas spent together, and soon, another Easter. God is good. God is always good. He is good when the cancer shrinks and when it spreads, but we are so thankful that right now it is shrinking and that we get to enjoy Mom a little longer.

Today Mom went to the radiologist and they did the CT scan to map her tumor and prepare the radiation plan. We are really hoping that they will decide she can receive SBRT, an intense, focused radiation that could potentially knock out her tumor entirely. They aren't 100% sure that they will be able to do it, and the decision on whether or not they will proceed with SBRT instead of standard radiation will be made in the next 10 to 14 days. We will let you know as soon as we hear. Please pray that the doctors would make a wise decision and craft a good plan for treatment.

Meanwhile, Mom has caught some kind of virus and she has been pretty sick. She is starting a new antibiotic today. Please pray that her body will be able to recover from this so that she will be able to start radiation as soon as the plan is in place.

Thank you so much for your continued prayers. They've carried us through this past year, and we are so thankful that you have joined us in this journey.

Wednesday, 6 March 2013

Dancing in the Minefields

Tuesday, 5 March 2013


Update on Mary: Radiation Preparation

On Thursday Mom goes in for a CT to map out her tumor and create a radiation plan. The results of the CT will determine whether or not she can proceed with the treatment. The insurance company has agreed to cover the costs (thank you for your prayers!!!), so she is set to go.

Recently Mom contracted a virus and is now on antibiotics to fight it off. She is having fevers and is feeling very under the weather. Please pray that her body would heal so that she can begin radiation soon. Radiation is going to be rough, so she wants to go into it as healthy as possible.

Thank you all for your continued prayers! We appreciate you ongoing concern and care for Mom! By the grace of God she is still fighting this fight, and we are so thankful for your ongoing intercession on her behalf.

Saturday, 2 March 2013

When Cells Start To Sickle...

Poor Nic. He is in a world of misery right now. Ever since his hospital trip a few weeks back he has not been himself. While he was in the hospital he was very withdrawn, and when he came home he barely talked for three days and was whining and unpleasant for some time after that. That last visit had a negative impact on him.

On Wednesday we had our regularly scheduled hematology visit. As soon as we walked into the office Nic focused his eyes on the floor, began shuffling slowly, and stopped talking. He was very nervous about the visit, and even the nurse commented on his unusual behavior. To make things worse, Nic's hematologist had gone home sick that day, and so we had to wait a very long time to see his partner, whom none of us are familiar with. I'm sure she is an excellent doctor, but Nic doesn't know her, and he didn't respond well to being poked and prodded by a stranger.

He is beginning to show signs of his disease. His spleen is swelling because his sickle-shaped cells are being trapped in the small blood vessels and clogging it up. This is very common in children with SCD, but it is a bummer nonetheless. We knew it would happen eventually, but we hoped eventually would come in a few years instead of now. It is possible that the cells could unclog and that his spleen will return to normal, or it is possible for the spleen to get infected and require removal, or for it to naturally destroy itself. While one can live without a spleen, it does impact the efficacy of one's immune system, so it is preferable to maintain a healthy spleen for as long as possible. Another SCD mom warned me that while his spleen is swollen he will be getting sick even more than usual and that we need to be even more careful, which is not easy with siblings.

Worse, Nicolas has developed a heart murmur. This is also expected in the course of SCD, because anemia forces the heart to work extra hard. The problem is that Nic really isn't very anemic right now. His January blood work showed a hemoglobin count of 11.1. It dropped while he was sick to 9.6 (iron levels generally dip when kids are sick), but that still isn't particularly low. In addition, the particular type of murmur (a flow murmur) caused by SCD has a certain sound, and the hematologist said that Nic's murmur does not sound like a normal SCD flow murmur so he needs to have an echo-cardiogram done. Poor Nic does not need any more trips to the hospital right now, but he has to go back in less than two weeks for the test. While the test is painless, he doesn't know that, and I know he will be scared.

All this to say, please say a prayer for Nicolas. He has such a tender heart, and he is just so sad right now. Please pray for his ability to process all of these events. Pray for his spleen to return to a healthy size. Pray that he will be willing to drink more water to assist his body in that effort. Pray that his heart murmur will be benign and not require any further action. Pray that his hemoglobin will rebound, and that his fetal hemoglobin levels will continue to stay elevated (he's at 28% right now, which is still great). Pray for peace during his heart test and for wisdom for the doctor reading the results. And pray for his mom and isn't easy watching him struggle.

Friday, 1 March 2013

Update on Mary: A Glimmer of HOPE

Mom and Dad just got back from their appointment with the radiologist. And we may have some good news...

there is about an 80% chance that my mom will be able to undergo a specialized form of radiation that might get rid of her tumor entirely. Go ahead and read that sentence again.

This doctor thinks there is a chance mom could beat this.

We are rejoicing.

This is still a long shot, but it's a chance. It's hope.

We needed some hope so badly.

Please pray for wisdom for my parents as they discuss the timing of this therapy. It is going to be brutal (but worth it).

Also, this is a one-shot thing. You don't get a redo on radiation. So, they want to make sure that they do it at the best possible time.

Please pray that my mom and dad would have clarity with their decision making process.

Pray for a quick appointment to get the necessary additional testing started.

Please pray that further testing will reveal that mom is indeed a candidate for undergoing radiation.

Pray that insurance will APPROVE this treatment.

Praise God for hope, and for this new doctor.

Mom has had low white counts lately (she had to skip chemo this week) and has not been feeling well. Please pray for healing and strength.

Thank you for your continued prayers. We will need them even more than ever if this goes forward. We appreciate your love and support so much.