Trending Downward

November 29, 2015

As a parent, you never want to hear that your kid is trending downward. Academics, sports, therapy, and especially during a battle against cancer, it’s just not a phrase you want to hear.  That’s how our November is coming to a close, but I’ll back up a little.

A Night Away
We started November with a chemo day and it went well. The following day Scott and I left for an overnight trip to Cape May, alone, together. This might seem normal to you, but it was anything but normal for us. We have been married for 16 years and our tradition is to go away for one night a year. This is probably a result of our simple family budget, but also a very genuine sense of contentment. We don’t really long to be away from our kids that often. I guess year #16 will go in the history books as a year of luxury, because this would be our second night away this year. We had a blast.

MorningWalk2

Our House
For about a week this month we were contemplating the sale of our house. Forget cancer and pregnancy and working three jobs and homeschooling, I was sure we could pack up our house and move in the midst of it all. We love our current house and really believe it was custom built for us. The only detail we can’t seem to settle on is bedrooms. Right now we have 4 girls sharing one bedroom and it’s getting crowded. We tried moving the older two girls down to the basement last year but it wasn’t the right solution.

Last weekend my dad found an old farmhouse right down the road from us with many bedrooms and many bathrooms. Our kindhearted and trusted real estate agent (message me for his info) humored us with a walk thru on Thanksgiving Eve. We knew right away it was too much for us to handle. And our kids were not impressed. We came home and each one said, “Mom we love our house, that other house was awful.”

I think as a parent you always want to give your kids the best. Sometimes we doubt ourselves and wonder if we’re doing them wrong. It was really the best Thanksgiving present to me to hear our kids say they were content where we are.

Black Friday
We had a wonderful Thanksgiving in our perfect-for-us home with both sets of grandparents. Our Black Friday was then another chemo day. The timing was great because Scott was off from school and he always loves the chance to take Theo to CHOP. I’ll be honest, it’s hard for me to stay home on CHOP days. I know it’s good for Scott and good for Theo, but I feel like I’m literally handing Scott my heart at the front door.

Since the kids and I didn’t have any plans, we drove up to KOP and surprised Theo at the end of his appointment. He didn’t look happy to see us, check out the pic, but instead climbed into my lap and hid his face. He’s pretty self-conscious of his CHOP life, and I think he missed me just as much as I missed him.

10inChemo2

That’s where the ‘downward trending’ talk began. Scott was texting me updates earlier so by the time I had filled up my gas tank at WaWa I knew Theo’s hemoglobin was low. I could feel my eyes stinging with tears as I raced up the turnpike. November had felt so normal I had almost forgotten what it was like to ride the cancer roller coaster. Once the ten of us settled in around Theo’s la-z-boy chair, our lead doctor came to say hi.  All of his numbers were low, she said, and they didn’t see many baby blood cells indicating a low fresh production supply. I would have liked to blame it on the lambasted chemo, but she suspects it is something else.

They are preparing to give Theo a blood transfusion as early as Tuesday of this week. They will also begin blood work tests to determine if there’s an underlying problem that’s hindering his blood cell production. Our friends and family are braced to help back home on Tuesday and Wednesday, so hopefully by the end of the week we’ll know more.  Will you please pray for Theo?  Please also pray that we will clearly see the warning signs if he needs a transfusion sooner than Tuesday.

Christmas Eve
Can I share one more thing? Theo’s next appointment is a spinal tap on Christmas Eve. I’m sad about that. My intellect tells me there are many families who spent Thanksgiving in the hospital, and many families who will spend Christmas week in the hospital, and relatively speaking our circumstances are much easier. But there’s a spoiled brat inside of me who didn’t want to spend Black Friday at CHOP, and who especially doesn’t want to spend Christmas Eve at CHOP, watching her son under sedation and separated from the rest of the family. I’m stuck in spoiled brat mode and I’m feeling sorry for all of us.

Will you please pray for me, for Theo, for our family? I hope that somehow we can be a blessing to someone at CHOP on Christmas Eve. What a great time to be around other people who are hurting. I don’t want to miss out on that opportunity because of a self-centered heart.

Thank you kindly

Matthew 16:24 – 27
24 Then Jesus said to his disciples, “Whoever wants to be my disciple must deny themselves and take up their cross and follow me. 25 For whoever wants to save their life[f] will lose it, but whoever loses their life for me will find it. 26 What good will it be for someone to gain the whole world, yet forfeit their soul? Or what can anyone give in exchange for their soul? 27 For the Son of Man is going to come in his Father’s glory with his angels, and then he will reward each person according to what they have done.

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Moving Into November

November 5, 2015

Tomorrow is Theo’s next chemo appointment. It’s a relatively light day. They will first check his blood counts and liver functions. If everything is within the normal range they’ll move on to IV chemo. Theo will start steroids again for 7 days to counter the drain of chemo, and Lord willing we’ll move on with November.

Also, it was a subtle change but a huge answer to prayer. Theo’s facial acne has completely healed up. For some reason I jumped to the conclusion that he’d have acne for the next two years. Oh ye of little faith. Thank you so much for praying for him. He looks great.

Matthew 8
23 Then he got into the boat and his disciples followed him. 24 Suddenly a furious storm came up on the lake, so that the waves swept over the boat. But Jesus was sleeping. 25 The disciples went and woke him, saying, “Lord, save us! We’re going to drown!”

26 He replied, “You of little faith, why are you so afraid?” Then he got up and rebuked the winds and the waves, and it was completely calm.

27 The men were amazed and asked, “What kind of man is this? Even the winds and the waves obey him!”

October Fun

November 5, 2015

We have now gone 29 days without visiting CHOP. That’s the longest we’ve gone in one year. I have been so busy enjoying life that I haven’t taken the time to blog. Thank God for his mercies.

Here’s what we’ve been up to…

A Surprise Party
Pop celebrated a milestone birthday this month and we really wanted to plan something special. The timing was perfect for a surprise party. Scott and the older girls were going away on a youth retreat and I was still in my 1st trimester blur. No one in our family expected much out of me, other than just plain survival. We had already invited Grandmom and Pop over for dinner after the retreat, but what they didn’t know is that we also invited 8 of Pop’s friends. It was a joy to see each friend arrive and it was rewarding to see the look on Grandmom and Pop’s faces. Happy Birthday Pop!
Blog_Party

A Special Visit
One of the many things I treasure about my friends is how they always push me to use homeschool time to serve others. My calendar looks nothing like theirs, but one thing we have penned on our family calendar is a quarterly visit to a nursing home. The theme for this visit was Halloween so the kids dressed up and we were on our way. Every time I go I imagine myself sitting in that chair, and I pray that one day someone will visit me.

(this is an old school picture of my grandmother)
Blog-Grammy

Halloween
Um, yes, we celebrate Halloween. I think it’s fun. I like to see the kids dress up. I like candy. I like to talk with our neighbors (it’s one of the only days they come out of their houses). This year we invited dear friends over for dinner and trick-or-treating. It was a blast.

Blog-Halloween

Happy October

1 Corinthians 10:31
So whether you eat or drink or whatever you do, do it all for the glory of God.

One Year

October 23, 2015

My cell rings.

“Theo’s really sick, sweetie.”

“Um ok, well when you say sick I think of the word cancer. Is there another word I should be thinking of?”

“Rebecca, is Scott home? Why don’t you go get him so we can talk about this together.”

It was 8:30 at night on Thursday October 23, 2014. We had a whirlwind of a day. I had been watching a lump on Theo’s neck all week and was able to squeeze in an appointment with our trusted pediatrician. But the real highlight of that day was skipping school and going bowling with my sister and her kids. They had moved to West Virginia and we missed them dearly. I didn’t mention the lump to my sister because I didn’t want her to worry, nor did I want her to think our visit wasn’t a priority.

Looking back I was pretty dismissive of our pediatrician’s concern. I’m not sure why, I guess positive thinking makes for a more productive day than worry. I waited for Scott to get home from work, served everyone dinner and then finally took Theo to the lab for blood work. He had never been to a lab before so he willingly laid his arm down on the armrest. He honestly didn’t move or make a sound as he watched the nurse insert the butterfly. Afterward he was in shock, almost violated, but it was too late to complain. I praised him over and over and took him for french fries and a milkshake. Once I got home I supervised 4 showers and 4 baths, said goodnight to 8 people and headed to the couch for my alone time with Scott. It wasn’t until the phone rang that I remembered there was any question of Theo’s health.

I share this story for you, if you’re interested, but more I share it for me, and for us and for Theo. I don’t ever want to forget the details as life goes on. Scott and I are also realizing that we haven’t even shared all of our stories with each other, as crazy as that sounds. Just the other day we were reflecting on the year and I shared a story of our time at CHOP that he had never heard. This year was a year of trouble, a year of God’s grace, a year of adrenaline, and we are just now starting to sort out the details.

On an optimistic day I will tell you that life is precious, treasure every moment with your babies, treasure every baby God gives you, for as long as He gives them to you. On a pessimistic day I will tell you to draw close to the Lord because you don’t know what lies ahead. Be ready, be alert, put on your armor each morning, be ready for battle. On a normal day I try to live somewhere in between the two. I love my babies, I go through the grind of cooking and cleaning and loving and teaching and correcting and repeat, and I find time to draw near to the Lord.

I have nothing but gratitude for the Lord and His mercies on this first anniversary of cancer. I am grateful for my Savior, my husband, my children, my family, my friends, my losses, my tears, my journal, my blog, my past and my future. He has not forsaken me, He has sustained me, He continues to meet with me whenever I show up, He promises me a hope and future, He promises me a place in His eternal Kingdom, and He promises to pursue my children’s hearts whether I’m on Earth or not.

It is well with my soul.

Psalm 62
Truly my soul finds rest in God;
my salvation comes from him.
2 Truly he is my rock and my salvation;
he is my fortress, I will never be shaken.