Our New Normal

November 8, 2014

Theo and I have now been home for one full week. We are treasuring every moment. In addition to 3 different chemos, he is on a high dose of steroids, so his belly and cheeks are rounding out. He wakes up at 3 am every morning for chicken nuggets and juice. He eats meatballs for breakfast and pasta for lunch.

School time is that much sweeter knowing that I could have been away for 3 weeks longer. I have never left our kids for more than a night or two, and hope I never have to again. I watch them write and listen to them read. I’m so thankful to be home. Theo stays close to me at all times, he’s quiet and calm. He lays on the floor while we do school and follows me around when we’re not in school.

I think one of my greatest heartaches coming home was the uncertainty of school. Our oldest child is in 6th grade so we have homeschooled for 7 years. It’s a way of life and it’s all we know. We are not anti-school. We believe God holds us accountable as parents for overseeing our children’s education, and for protecting and shepherding their hearts along the way. Beyond that, it is a personal decision that is unique for each family. For us, homeschool is the right choice. How would that be possible now, if Theo and I are in and out of the hospital for the next 8 months?

Scott’s mom is a retired first grade teacher. She is a rock star teacher in her school community. But up until now, she has always just been Grandmom to us. She has worked hard to build a sweet relationship with each of our kids. I would have never asked her for help, for her to take on a new role in the kids’ lives, for her to give up her hard earned free time. But she would be the perfect addition to our school routine. When I’m home, I could have the extra slack I need to care for Theo. When I’m not home, she could help keep the kids on track. I wanted it to work out, but I knew it had to come from the Lord. And it did. Mom offered to come to our house to help us 2 – 3 days a week. The kids would have to listen well, and the babies would have to disappear. Deal.

I would ask that you pray for Grandmom as she takes on this new role in our family. She has given up her part-time income and a good amount of retirement freedom. Wintertime is coming, and they are predicting a snowy season. Please pray the Lord would continue to inspire her, that He would meet all of her needs and that He would bless her many times over.

Deuteronomy 11:18 & 19
“Fix these words of mine in your hearts and minds; tie them as symbols on your hands and bind them on your foreheads. Teach them to your children, talking about them when you sit at home and when you walk along the road, when you lie down and when you get up.”

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Heading Home

November 1, 2014

Theo and I have been here at CHOP for 9 nights and 10 days.  Theo has received an incredible amount of medicine and medical support.  For the last three days they found zero blasts in his blood.  The results from his spinal tap yesterday also show zero blasts in his spinal fluid.  I am excited to say we are on our way home today!

Here are some ways you can continue to pray for us:

1.  Discernment…Theo will need to be re-admitted periodically for help that we can’t give him at home.  We have a long list of warning signs and it will be up to us to call if we think he needs that extra help.  Please pray that we are able to tell the difference between a good day and a bad day.  Please pray for peace on the good days, and a quick response on the bad days.

2.  School…The Lord has made a way for us to put our younger kids in a Christian school.  I would like to try homeschooling for a little while longer.  Please pray I don’t hold on to this selfishly or to the detriment of our kids, but that Scott and I together make the best decision for our kids as time goes on.

3.  Day 29…November 21st is Day 29 of Theo’s treatment.  This will be his next spinal tap and bone marrow test.  If his bad counts fall under a certain threshold, they will determine him to be in remission.  Please pray for remission.

Thank you again for praying for us this week.  Scott did an awesome job as a single dad of 7.  I learned a lot from talking with countless doctors and nurses and made some special memories with Theo.  We are excited to be back together again.

God is good, all the time.  We hope our story can bring Him glory in some way.

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An Unexpected Loss

Friday, October 31, 2014

We were expecting a new baby before Theo’s diagnosis.  I had a miscarriage while staying here in the hospital this week.  We trust the Lord with our family, and believe this baby was meant to go straight to heaven.

This is a picture of Scott and I the night we found out we were expecting.  I never meant for it to be seen in public.  I did, however, plan to use it for the first page of the new baby’s scrapbook.  Children are such a blessing, such a gift that only God can give.  I know that might sound trite, but that’s really how we feel.  Our joy for this baby was no less than back in 2002 when we learned that Kiana was on her way.  That’s not to say that we don’t feel poor, feel tired, and feel too old on many occasions.  It’s just a reverent acknowledgement that God is the giver of life.  We are grateful to walk with Him while we’re here on Earth.  We trust He will provide the energy, the patience and all the things we need to raise our kids to fear and to love Him.

I will still scrapbook this picture, it just won’t be the book I imagined.

God is good, all the time.

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The Diagnosis

October 25, 2014

Early Friday morning the doctor explained that Theo has B Cell Acute Lymphoblastic Leukemia otherwise known as ALL.  Later on Friday Theo received his first blood transfusion and his first dose of chemo.

Today Scott and I met with doctors to review Theo’s plan of treatment.  It will be 8 months of intense chemo treatment and then 3 years of maintenance chemo.  Theo had a port implanted into his chest and a second blood transfusion this afternoon. Tonight they will begin his first full dose of medicines.

I could give you a long list of ways that God has already answered our prayers in these 3 short days.  I am keeping a journal of medical discussions and answered prayers, and it is filling up quickly.  I could also describe the moments where I lay in bed with Theo sobbing, my tears soaking his head.  I woke up from a nap and literally for a minute, could not remember where I was and why I was here.

We have been told to expect to be here for one month, and it’s always possible that we could go home sooner if Theo handles the meds well.  Once we go home we will report to the KOP outpatient center.  We will be re-admitted for antibiotics any time Theo develops a fever.

We aren’t sure what our family’s “new normal” will look like.  We would love your prayers as we think and pray about school, schedules, little people and big people.  God is with us, and we know He has great plans for us.

All Glory to God

TheoSmiles

A Visit to the Pediatrician

October 23, 2014

We found a small lump on the back of Theo’s neck yesterday.  We went to the pediatrician this morning to get it checked out.  We left his office with a script for blood work, but stopped at the bowling alley to meet up with the cousins.    Tonight around bedtime we got a phone call and were told to pack a suitcase and head to CHOP.  Here’s what we learned at CHOP…

Theo’s hemoglobin is 6 and should be 12.
Theo’s platelets are 20,000 and should be 200,000.
Theo’s white cells are so low they are having a hard time studying them.

Theo’s heart is beating faster because of this. He needs a blood transfusion and a platelet transfusion immediately.

Theo will need a spinal tap and bone marrow test in the morning. He will be put under general anesthesia. This will take about 90 minutes.

The computer will then stain the cells and look for a pattern to make a diagnosis.

They have asked our permission to give Theo a dose of chemotherapy in his spine tomorrow. This is proactive because there is such a strong link between leukemia and brain cancer. I haven’t signed on that yet, but it sounds like the right thing to do. I signed on the transfusions.

Theo’s kidneys, liver, electrolytes and chest X-ray are all perfect. That is really good because it allows us to safely find a diagnosis quickly.

There’s a small chance this is a viral infection gone crazy. Only tomorrow’s procedure can tell us for sure.

Theo has been up all night, quiet, thoughtful, we snuggle in between doctor conversations.

The siblings are allowed to visit.

I’d really like Scott here for the procedure tomorrow. I don’t know what time yet.

We are headed up to our new room. They say Theo won’t be home for a while. They say they have a 95% cure rate for cancer.

I feel steady, thankful to be with Theo, thankful to be sitting in the best hospital in the country.

Please pray for our baby. For total healing, wisdom, steady hands, and a strong witness for Christ as long as we are here.

I know God is with us, He is my friend and won’t forsake us, I know He uses all things for His glory and our good. Glory be to God.