Today (3/13) begins two long days of tests that are very important. It has been almost a month since my last update. Here is what has been happening and what is coming up. Feel free to jump ahead if this is too much info… “what is happening this week” and “how to pray” are toward the end. The details are for my family who thinks I don’t give enough info… (you’re welcome, mom)…. 🙂
Chemo week #5 (2/16-2/21)
- Emily prefers to receive the chemo at night. It makes her more nauseous (physically and emotionally) to see it going into her body. This particular chemo (methotrexate) is a four-hour dose and then days are spent getting over the nausea, sickness, and flushing the chemo out of her body so it doesn’t hurt her kidneys and liver.
- So they had us check in at 5:00 PM (on 2/16). And Emily tested positive for Rhinovirus (a common cold). We thought it was no big deal, but now a month later – she still is suffering from it. Her immune system is so low that her body isn’t even fighting off a cold.
- They had done a surgery to move her port earlier in the week. Since then, there has been success in accessing it the first time – which has been a huge relief. Being there when they continually stick her in the chest with a needle and unsuccessfully access the port under her skin was terribly painful for Emily and incredibly painful to watch. It is the only time I’ve seen Sue leave the room when Emily was suffering. So we are thankful that it seems those difficult days of accessing her port may be over.
- They started her fluids at 11:00 PM and the chemo began at 4:00 AM.
- The next day – she threw up twice, and the doctors added a couple more meds for anti-nausea.
- Emily mostly sleeps for 36 to 48 hours once chemo begins because of meds they are giving her. She wakes up every couple of hours to pee because of the huge volume of fluids they are putting in her 24/7.
- She can get released from the hospital once the methotrexate number in her blood is at a volume of .1 or below. Every person “clears” at a different pace. It seems that Emily’s system takes longer to clear than most. That is discouraging for her, but it is just a reality we can’t change.
- They measure approximately every 24 hours at the time that chemo began.
- On Sunday AM, she was at 13.2
- On Monday AM, she was at .7
- On Tuesday AM, she was at .15
- On Wednesday AM, she was at .1 – so she was finally released in the early afternoon.
- That was another five night stay in the hospital. Each Methotrexate treatment has been five or six nights for Emily.
- During chemo, Emily rarely wants to eat or drink or even get out of bed. They encourage but don’t force any of them. This time she was a bit hungry. One of the anti-nausea meds increases appetite, so that is good. For a few hours, she also felt good enough to go up to the observation deck and play a card game, and she went to “Bingo” and won a $5 gift card.
- Overall, though, other than a few good hours on Sunday, Emily had her roughest chemo yet. Her cold got worse, she had low blood sugar they had to manage, and generally felt nauseous for a longer period of time, and more sick than normal.
Chemo week #6 (2/27-3/4)
- We were hoping to start chemo on Friday (2/23). They like to keep chemo treatments one week apart (from one start to another). However, because of how rough the previous chemo round was and her cold isn’t gone – they postponed until Tuesday (2/27).
- There were two huge bonuses of Emily not starting Friday (2/23):
- First, she had six days away from the hospital to be at home.
- Second, we were able to go the Mercy Me / 10th Avenue North concert on Friday night. God has used their songs a great deal in our family in recent months. It was a blessing. I know many of you prayed that it would work out. We are very thankful that it did.
- On Tuesday (2/27), fluids started around 7:30 PM and the chemo began at 2:00 AM.
- I am thankful that I was in town all week for this chemo round. I was leading a Lead Pastor Coaching Network at the office so that allowed me to be in town the entire time.
- She didn’t throw up this round and experienced more normal, though difficult, nausea.
- For those who love these things – here were her numbers (needs to get below .1 to be discharged:
- On Thursday AM, she was at 17.9
- On Friday AM, she was at .68
- On Saturday AM, she was at .18
- On Sunday AM, she was at .1 – so she was released in the early afternoon.
- Another five night stay for her. She’s pretty consistent.
- During her week off, Sue’s sister was in town. And during this chemo round, friends from Harrisburg (Joel & Deb Garrison) decided to come down for a couple of days. Emily loves them and they were our first youth leaders from my youth pastoring days in 1992. It was refreshing to spend time with them and they kept Emily smiling (if not laughing) even when she wasn’t too comfortable.
- Emily has experienced a bad reaction on the bottom of her feet from the Methotrexate. Her skin gets very red, sensitive, and peels off. They don’t know what is causing it, but they are trying to treat it through cold compression. It isn’t helpful when she should get up and walk, because it is painful to put pressure on her feet.
- Emily came home Sunday afternoon and was scheduled to re-start chemo #7 on Tuesday. However…
Chemo week #7 – CANCELLED
- On Tuesday (3/6), Emily and Sue went to the hospital to do labs, get her port accessed, meet with the oncologist and start chemo in the evening (I was out of town until Wednesday)
- They accessed her port, did her labs and they met with the oncologist and found out she now has a fever (on top of the cold that hasn’t gone away). So they sent her home with the goal of coming back Wednesday to begin the chemo round. They put her on an antibiotic.
- On Wednesday (3/7), she didn’t feel better so they cancelled the chemo. They have decided to not do any more chemo until after surgery. They need her body as strong as possible for the surgery coming up on 3/19.
- So the good news is, Emily will have two full weeks at home to recover and relax before surgery.
- Another encouragement this week was that my sister was able to come into town for a couple of days.
What is happening this week:
- First, the good news. Morgan was scheduled to come home Friday for Spring Break. She took some cuts and got permission from her resident director to leave early (RAs aren’t supposed to leave early for breaks). So she flew home Monday (instead of Friday) and surprised Emily. It is hard to describe the emotion we feel as a family when we see each other. Life is just “different.” We are in a new reality, and emotions come quickly when we see each other after a few weeks apart. We are so thankful she will be here for almost two weeks!!!
- Today and tomorrow are really big days for Emily. It is time for the 3-month check-ins. Today, she has the following tests:
- Sue, Morgan, and Emily arrived at the hospital at 8:00 AM and will be there all day (I’m on the road until Thursday).
- Electrocardiogram and echocardiogram – to make sure there is no heart damage (chemo can damage the heart)
- Bone scan – to see if cancer has spread to other bones. This is a nerve-racking one, frankly. If it has spread, it isn’t good news, obviously. Three months ago, it was only in her knee bone.
- Chest scan – 3 months ago there were small nodules in her lungs they wanted to keep an eye on. They were too small to biopsy, but they will look again to see if they are growing, gone, or still there.
- I’m not sure when those results will come in.
- Tomorrow, there are more appointments and tests:
- She will have X-rays and MRIs on her knee and femur to prep for surgery.
- They will also meet with the surgeon to talk about the surgery.
- I’m not sure what those X-rays and MRIs will tell us. I’m guessing they are just to help them prep for surgery.
- Surgery is scheduled for March 19th. They will take out the cancer as well as a significant part of her femur bone and some tissue surrounding it to get rid of all the cancer (we pray it is all of it).
What you could pray for:
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:
- The results of these tests are crucial. We are asking for a clear bone scan. We also pray that the lung scan would indicate the nodules were not cancerous.
- Pray that she would get over her cold before surgery. She’s had it for almost a month now.
- Pray for Emily’s mouth sores and feet sores to heal completely so she doesn’t need to suffer with those side-effects with surgery approaching.
- Please pray for peace for all of us. Whatever comes, God is sovereign. He is good, and He can be trusted.
Here are some pics of the last month of our journey:
I think we literally might spend more time here than at home in 2018 (it will at least be close). But we sure are thankful for this place.
We meet a lot of cancer families from around the world. One family from Denmark is here for their 2 year old son, Balder, who is fighting cancer. And Sue loves to hold his younger brother, Bjorn, whenever possible.
Emily decided her wig was a bit too long. So her aunt, who was in town for a week, gave her a haircut.
Here is the final product.
We loved (and God knew we needed) the Mercy Me / 10th Avenue North concert. Friends of ours (Faith & Taylor) were at the concert and found us during the intermission.
It was great to enjoy a visit from Joel & Deb. We drag along Emily’s fluids where ever we go.
While my sister was in town and we all were home we stained our deck in the backyard.
Daisy claims that cancer is stressful on her too. And sometimes she just needs to kill something. She decided her bed needed to die.
One of her last nights home, she was in the mood for some Rochester food, so Sue prepped a garbage plate for her.
Last night she was given tickets to the rodeo. The Houston rodeo is a huge 3-week event in Houston. The hospital gave us tickets, so the girls were able to go last night. The rodeo takes place in the Houston Texans stadium and each night has a country artist perform a concert. So they enjoyed the Zack Brown Band last night.
They are putting the dye in her to be able to take the bone scan. So now they wait 2 hours to let the dye get through her body.
They went for a walk and lunch between appointments.
If you made it all the way through, congratulations! Thanks for your concern and prayers. The next couple of weeks are pretty important for Emily’s long-term future, and we would ask for your continued prayers.