WHAT DAY 1 OF A CHEMO ROUND IS LIKE
Last week, chemo started on Thursday (1/18), and Emily was in the hospital for five nights. She was home on Tuesday afternoon (1/12). It is a quick turn-around, and after two nights at home, it is back to the hospital for the fourth chemo round.
We thought you may be interested in what the first day of chemo looks like.
The first meeting is at 8:15 AM. So we pack the van to head to the hospital at 7:00 AM. With traffic on a workday, the 21-mile drive takes about an hour.
Before leaving, Emily needs to get some snuggle time with Daisy.
When we arrive at the hospital, we don’t unload the van. We aren’t checking into the chemo floor yet. Other appointments first. Often it involves quite a bit of waiting.
The first item on the agenda is for them to access her port – where the fluids, meds, and chemo will go into her body and the blood draws will come out. They do not give her IVs and chemo through her arm. They need larger veins. So several weeks ago, they did surgery to put a port under her skin, in her upper chest area. Each time we come in for chemo, they have to use a needle to connect with her under-skin port (which goes into a large vein). Once it is accessed, it stays connected until she is discharged from the hospital. It is not only about connecting to a large vein, it is supposed to be a lot easier than sticking your arms for nine straight months. However, they have struggled to access her port each time. Two weeks ago, it took 8 painful attempts. Last week, it took three attempts. And this is a section of the hospital where this is all they do – set up IVs! These are very uncomfortable and even painful for Emily. Apparently, in surgery they put the port too deep and didn’t stabilize it well. Today, we asked for the charge nurse – as we hoped she could have earlier success. And she did. Only one attempt! However, they are going to do surgery Monday or Tuesday and move Emily’s port so it is easier to access. This shouldn’t be as difficult as it has been. It means another surgery, but we will be glad to have that done.
Then we go to another area of the hospital for a blood draw for them to check her numbers before chemo. If the numbers aren’t high enough, they won’t start chemo.
Then more waiting… this time to see the oncologist.
This is the crucial meeting of the day. We hear all about the numbers and get the OK to proceed with chemo. It also is when we ask a lot of questions. Emily here is asking if we could not start chemo until she is asleep. This last week she threw up in the middle of the four hours of chemo being administered. So she wants to start late at night so she can be tired and asleep. She got permission to go home and come back at 8:00 PM to check in for chemo. Typically, she would then go down for the exercise study. She is part of a clinical trial where they are testing the advantages of doing exercise while going through chemo. But the physical therapist was on vacation, so no exercise study today.
Sue takes detailed notes as we learn new information and when we ask a lot of questions.
This is the look Emily had when told the next round of chemo (after this week’s round) won’t start for three weeks from today (2/15)! By the time she gets home, it will be more than a two-week break to let her body recover!! That is genuine joy on her face.
Arriving at home around 1:00 PM, Emily was tired and wanted to rest a bit. So Daisy hung out with her.
After a few hours at home, it is back to the hospital. This time, we unpack the van and bring everything into the hospital with us. Sue will stay in the room with Emily. So this is all of Sue’s and Emily’s things that will last a few days. I will stay at an above-garage apartment about 2 miles away.
Fluids began around 9:30 PM. Sue and Emily are resting before they will go to sleep around 10:30 or 11:00 PM. They will run fluid in her for four hours and give her preventative nausea meds. After four hours (around 1:30 AM), they will put the chemo in. This round of chemo is a very potent blend of two chemo treatments. It causes quite a bit of sickness. The first one will run for 15 minutes. The second one for four hours. Tomorrow night, they will do the same thing.
Each chemo week, I give Emily a thought or verse to focus on while suffering. This week is one of her favorite verses – Psalm 46:10 – “Be still and know that I am God.”
WHAT IS COMING THIS WEEK
- This week of chemo is the combination of two chemo meds: Doxorubicin and Cisplatin. The last two weeks were Methotrexate. This combo is what makes her very nauseous, very weak, and just overall feeling terrible.
- It starts with four hours of fluids. Toward the end of the fluids, they will give her some meds for nausea and one med to protect her heart from the next chemo drug (doxorubicin).
- Then it is 15 minutes of the doxorubicin.
- Then 4 hours of cisplatin.
- Then fluid throughout the night and all day tomorrow.
- Then tomorrow night – it will be the same two chemo drugs.
- Then, one or two days for her to recover and flush everything out of her system.
- Some have wondered why this is in-patient chemo. Osteosarcoma is an aggressive, stubborn cancer. And since it is bone cancer, the chemo combination and dose is potent enough to kill the cancer in the bone. So as they put the drugs in her, they want to wash them out as soon as possible – so it doesn’t damage major organs. So it requires 24/7 fluids. It enters her at a pretty high rate – so it makes her get up to pee about every 2 hours the entire time we are in the hospital.
- Although this is a much more uncomfortable treatment, it doesn’t require as long of a stay. Emily may be allowed to go home by Sunday (3 nights)!!
HOW YOU CAN PRAY
How can you pray? Here are some long-term and short-term prayers for this week:
Our long-term requests are the same:
- That God would be glorified in and through Emily and her Osteosarcoma, and that we all would submit to His glory being our priority.
- That Emily and our entire family would grow through this (we believe God is always out for our good – which ultimately is to become more like Jesus).
- That God would heal Emily and she would live a full, long life serving and pleasing Him.
- That Emily (and all of us) would have peace and joy. This did not take God by surprise and He is for us.
- That we would be sensitive to how God wants to use this in all of our lives.
- That the cancer has not spread at all. And that the coming surgery would be successful in removing all the cancer.
Our short-term requests include the following:
- Continue to pray that the chemo would be potent in killing cancer and weak in its side effects. Emily would love to not throw up this week. Although this is the more potent dose of chemo (same as week 1), week 1 was the only week she didn’t throw up. So she would love to avoid throwing up as she has the past two weeks.
- This Saturday night, I leave town for 12 days. I’m leading a trip to Israel. I would really like to pray that they are allowed to come home Sunday. I don’t like to be away during the worst rounds of chemo. Thankfully, Emily will be on a break for the rest of that trip. Sue’s parents are flying in Saturday afternoon and will be here for three weeks. We are thankful for that.
- There are four of these difficult combo weeks through the nine months of treatments. This is the second of four. Pray for God to be close to Emily during these difficult days.
- Emily is doing a chronological read-through of the Bible. She is in the book of Job and had some questions today about that book. So we talked about the story. It was great to be able to talk about how Job suffered and was never told why. In fact, when he demanded to know why, that didn’t go over very well with God. Job’s final response was repentance for challenging God and submission to Him. It was a good reminder that we don’t know why Emily is suffering with cancer, but we know God is good and can be trusted. Pray that she will experience the peace through this suffering that will remind her of that truth.
- Pray that Emily will be able to “Be still and know he is God” this week – even as she suffers.
Thanks for your interest in and prayers for our little girl. And thank you for praying for her to our God who loves her more than we possibly could.