Christmas with Cancer

December 21, 2014

Unknowingly I was discouraged a few weeks ago. I never realized that people with cancer celebrate Christmas with cancer. I just never gave it much thought. December had begun and as we approached Christmas, for us it meant that Theo would celebrate Christmas, with cancer. I had been sad about that and I didn’t quite realize it. In addition to sadness I was fighting against two other conflicting tendencies. At times I would rush around to get things done in case Theo and I ended up back in the hospital. At least I could leave a beautifully decorated home full of carefully wrapped presents, right? At other times I wished I could stop time altogether. It was as if I didn’t want Christmas to come at all, because it would be Christmas with cancer, a cloud hanging over all of us.

Around that same time Scott asked me one night what I needed. Just looking at me, and knowing what we had been through that past month, he knew I needed something. He loves me, he cares for me, he wanted to help me. A nap, an afternoon alone, coffee with a friend, a night away? He was ready to make it happen for me. He was so sweet to ask, but I could honestly say that there was nothing that anyone could do for me, not even Scott.

There was really no one and no thing on Earth that could give me peace of mind, joy in spirit, or a Christmas cheer. Christmas is the season we celebrate Jesus coming here to Earth as a baby, the beginning of His journey as our Savior. He came so that we could have peace and joy here on Earth as well as into eternity. I had been processing this as an emotional conflict because it was during this celebratory season that I found myself in the center of a life-threatening disease.

After some time of searching I realized that if I really understood the Christmas season, no conflict existed. Instead, I could celebrate Christmas this year with a deeper appreciation than ever before. Nothing could bring me that peace of mind, joy in Spirit or Christmas cheer, except for Jesus.

I am excited now, because perhaps, just quite possibly, this will be my sweetest Christmas yet.

Merry Christmas

Isaiah 9:6-7
For to us a child is born, to us a son is given, and the government will be on his shoulders. And he will be called Wonderful Counselor, Mighty God, Everlasting Father, Prince of Peace. Of the greatness of his government and peace there will be no end.

Luke 2:10-14
But the angel said to them, “Do not be afraid. I bring you good news that will cause great joy for all the people. Today in the town of David a Savior has been born to you; he is the Messiah, the Lord. This will be a sign to you: You will find a baby wrapped in cloths and lying in a manger.” Suddenly a great company of the heavenly host appeared with the angel, praising God and saying, “Glory to God in the highest heaven, and on earth peace to those on whom his favor rests.”


Praise and Glory

December 15, 2014

I am so excited to tell you that Theo’s port worked beautifully today. The nurse inserted the butterfly and drew blood right away. It was a huge relief, a needed boost in morale for all of us.

We do not have any appointments scheduled for the next 10 days. Theo takes a form of chemo medicine orally here at home, and his last dose is Christmas Day. The following day he will go back into the office to start Phase 3.

Thank you for praying for Theo. We feel like we have an army behind us and we are grateful. We couldn’t do this without you.

Luke 2:13-14
Suddenly a great company of the heavenly host appeared with the angel, praising God and saying, “Glory to God in the highest heaven, and on earth peace to those on whom his favor rests.”


December 12, 2014

We heard back from our doctor late today. She spoke with Dr. D and he doesn’t think it is worth the risk to operate on Theo again. Theo’s first surgery didn’t go so well. It is a common surgery that is supposed to take less than an hour. Theo’s surgery took all afternoon. Theo’s heart didn’t react well and they had to stop and call the cardiac team. Dr. D came out about every hour to give us updates. I still don’t think we know all the details about what happened that day, but hearing Dr. D’s resistance to a second surgery helps us to fill in the gaps.

On one hand it’s nice that the decision was made for us. No one is going to argue with a highly-respected surgeon at CHOP. On the other hand, we have exhausted all human options. As the momma who stands by the bed as nurses manipulate Theo’s port by hand, it is a wearing experience. And as you know, we are only 2 months into a 3 year treatment plan.

All we can say is this, it is moments like this where God steps in and makes the difference. It is when we are all out of options, when there is no feasible solution, no alternative plan. It is then when we can clearly see that He is alive, He is at work and He is mighty. We never want to be in that position, but it’s a beautiful thing once you’re there. When we see Him move on our behalf, when He accomplishes something that no one else could accomplish, all that’s left for us to do is to give Him praise and glory. May that be our story with Theo’s port.

Revelation 5:13
Then I heard every creature in heaven and on earth and under the earth and on the sea, and all that is in them, saying: “To him who sits on the throne and to the Lamb be praise and honor and glory and power, for ever and ever!”


December 9, 2014

Before Theo’s diagnosis, this was the proverb I was meditating on:

“Blessed are those who gain understanding” Proverbs 3:13

To me, it means slow down and take time to listen, two things that are hard for me to do. This week has been a week to gain understanding. Theo’s port did not work at all for the first 2 hours on Monday. We had three nurses gathered around trying their best to manually figure out what was blocking it. It was not an option to delay the chemo again, so they explained Theo would just need an IV in his arm if they couldn’t get it to work. We were all relieved when it finally starting working.

It was time to talk about surgery. I was really happy when they said they would contact the surgeon who worked on Theo’s port originally. The story of Dr. D is my favorite story to date, I will share another day. Dr. D answered us right away via email and requested that Theo get an echocardiogram. Theo’s first surgery was traumatic, his word not mine, so he thought maybe Theo had developed a thrombosis, or an internal bruise from surgery. This could be blocking the end of the tube which was laced through a major vein in his heart.

On Tuesday we drove back to KOP for the echocardiogram. I am so thankful for our different co-op friends, I have complete peace leaving my busy little family behind when they are here. The test was easy and quiet and we hit McDonalds on the way home. I was thinking to myself, there’s no way they’d let us walk out of here if he had a blood clot near his heart, right? Right. Later on Tuesday the nurse called and Theo did not have a thrombosis. They contacted Dr. D again to ask him to help us make a plan and we are now waiting to hear back from him. Theo will probably go back in next Monday to have his last spinal with the troubled port and then we’ll schedule surgery. We’re ready. It would be good to have a reliable piece before the new chemos start in January.

Please pray for Monday, that Theo’s last spinal would go smoothly. Please thank God for Dr. D, he’s a great guy as he encouraged us years ago and we are so glad to be working with him again (teaser). Please pray that Theo will have everything he needs (a working port) before he starts Phase 3 with new chemos in January.

Jeremiah 29:11-14
“For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future. Then you will call on me and come and pray to me, and I will listen to you. You will seek me and find me when you seek me with all your heart.”


December 5, 2014

Today didn’t go as we had expected. The plan was a spinal tap with chemo and home by 3. We started out strong, even ahead of schedule. But then the doctor came back in. Theo’s hemoglobin was back down to a 6. He hasn’t been that low since the day he was diagnosed. They also saw one suspicious cell. What? My heart stopped for a second. No one prepared us for that. I guess it could happen at any time. The doctor assured me she wasn’t worried, but I had a hard time believing her.

It would have been too dangerous to sedate him today. It is the red blood cells that carry oxygen to the brain and body. He was already low on blood oxygen as indicated by his hemoglobin count, so sedating him would have compounded the problem. Instead, he needed a blood transfusion. The hospital has a thorough type matching process and they wouldn’t have a match ready until 2pm. It was then 10:45am. They offered to let us go home for a little while.

As we drove back toward the turnpike, this song started playing in my head, and not by my own doing,

“I will sing of the mercies of the Lord forever, I will sing, I will sing. And with my mouth, will I make known, Thy faithfulness, Thy faithfulness.”

I sang that all the way home. Sometimes when you can’t feel it, you just have to proclaim it by faith.

At home Theo watched cartoons and I made the kids their favorite dinner, barbeque chicken, swiss cheese noodles and peppermint patty brownies. Soon we headed back to the office. Theo and I sat together in a laz-y-boy chair, in the dark, watching cartoons. We watched him for signs of an allergic reaction but everything went well. The transfusion took over two hours. We then headed back to the turnpike, now during rush hour. I sang the song the Lord had given me earlier. This time my feelings followed.

We will go back on Monday for the spinal tap and chemo, and hopefully get back on track with his treatment plan.

Psalm 89:1
“I will sing of the mercies of the Lord forever; with my mouth I will make your faithfulness known through all generations.”

Hebrews 11:1
“Now faith is confidence in what we hope for and assurance about what we do not see.”

Power Rangers

December 3, 2014

Its 2:30 in the morning and it’s been a busy night for me. Cali needed to be rocked twice, Tray needed Tylenol and juice, a dying battery needed to be taken out of the carbon monoxide detector and Theo needed to pulled out of the crack next to his mattress. Now that I’m awake I thought I’d let you know that Theo is doing really well this week.

Cali recovered from the chicken pox very quickly. Within days her spots cleared up and Theo shows no sign of the virus. When we visit CHOP we are still kept in isolation to protect the other patients. This will end December 15th so we are almost out of the grey area.

Theo has been off the steroids for 12 days. His pants still don’t button but it’s obvious that he’s lost some weight. He can now crawl up the stairs by himself. He only sleeps in the afternoon during his normal nap time and spends the mornings walking around and talking. I heard him yell, “Power Rangers!” the other day and I went running. I found Theo and Tim on the ground rolling around. The boys are only a year a part and they are the best of friends. I know Tim has missed his buddy this month and seeing them roll was such a moment of joy. Of course I quickly broke it up, I’m not sure what the new rules are on wrestling.

I think this week is the first time that Scott and I have breathed since that phone call at 8:30 at night back in October. There seems to be a lull, a beautiful lull, and we’re finally able to catch up on some of the other areas of life.

I even went to get my hair highlighted over the weekend. It was really the first time I’ve left Theo since October. I picked up a magazine and there was an article written by cancer survivors. I came home and turned on the TV and there was a commercial about kids with cancer. Honestly, I don’t want to read about cancer, I don’t want to watch commercials about cancer and I don’t want to talk about cancer. I just want to beat cancer.

John 10:10
“The thief comes only to steal and kill and destroy; I have come that they may have life, and have it to the full.”

Trouble with the Port

November 28, 2014

I know I said earlier that Theo’s port is pretty cool, but we just keep having trouble with it. I was so glad that my favorite nurse was in today so Scott could meet her. She has no idea I’m referring to her as “my favorite nurse” on our family blog, but one day I hope to express to her how much she has encouraged me along the way. Anyway, it took two tries and a little bit of time to get his port to work today.

The port is supposed to make things easier because you don’t have to have good aim. You have a target the size of a dime, and these nurses are the best of the best. So when the best of the best can’t get the port to work, you start to wonder why. Our nurse went to go so far as to say that Theo has a “lemon” of a port. The doctor suggested that his considerable weight gain might have caused it to shift, and as he loses the weight it will hopefully settle back in place. They sent him for an x-ray to check the positioning and said it looked fine. They will consider replacing it if it keeps giving him trouble.

It wouldn’t be the end of the world for Theo to have a second surgery to replace his port, but goodness it would be nice if that wasn’t necessary. This port is the source of his medicine for the next 3 years, so it’s our most important piece. Will you please pray that Theo’s port would settle down and start working consistently? Will you please pray he won’t need a second surgery to replace it? Thank you dearly.

“I have not stopped giving thanks for you, remembering you in my prayers.” Ephesians 1:16