It has been several days since Noah’s chemo “bomb” last Friday. It was a long exhausting day, but I’m happy to report that he had only minor side effects that day. We thank you for your prayers.
We have been at the hospital every day since then. We started giving him an oral chemo that night, he started another chemo on Saturday for four days, and today had a spinal procedure. He is such a trooper.
We continue to be so impressed by St. Jude. Not only do they treat the patient’s illness, but they truly care about them and their families. Today, they had a Valentine’s party for the patients and their siblings. They had crafts, candy, gifts, and entertainment. Noah woke up from his procedure, ready to go to the “Love Bug Bash” party with Daniel and Emmalee.
Tomorrow, we get the day off! We are excited about staying at the house all day because that doesn’t happen often. On Saturday, we’ll start the four days of chemo again.
Yesterday the physical evidence of Noah’s treatment really hit me for the first time. I had left him in Millington on Monday and returned yesterday. Two days. The difference in his face was remarkable in those two days — much more swollen. That’s one of the results of the steroids he’s taking. We’ve known it was coming and have been told to expect these types of physical transformations, but it was jarring nonetheless. I’m so glad we were able to get some good pictures of him last Saturday.
Noah hasn’t been to the hospital much this week, but tomorrow is going to be a whopper. The spinal tap that they planned to do earlier in the week has been rescheduled for tomorrow, and he’s set to get a long chemo treatment. We’re expecting for him to be at the hospital from about 7 a.m. until about 9 p.m. This will be the longest he’s been there since getting discharged last month.
So, some prayer requests:
— Pray for Noah about his treatment tomorrow. Pray for strength, stamina and courage for him as he endures this grueling day. Pray also that the side effects from tomorrow’s large chemo treatment will be minimal. He’ll be getting some different types of chemo than what he’s had so far, so that’s always a little unsettling for us in not knowing how he’ll respond.
— Pray for me as I try to juggle all the logistics of the back-and-forth between Jackson and Millington. Much of the time I have to pause and think what day it is. The travel and time spent in both places is difficult emotionally for me. There are constant challenges in what we do with Daniel and Emmalee between the two places. We’re adjusting our plans non-stop, it seems. Plans fall through because people get sick, and we have to be extra cautious in exposing the kids to anyone who’s been sick or been around people who are sick.
— Pray for Daniel and Emmalee about this upheaval. If it’s hard on me, I know it’s hard on them. By God’s grace, they are handling it well so far, but I know it’s frustrating and tiresome for them as well.
— Pray for wisdom for Sarah and me when it comes to discerning and meeting all the different needs for our kids.
— Pray for endurance for all of us. There’s light at the end of the tunnel when it comes to this intensive induction phase, but 3-4 weeks still sounds like a long way off most of the time.
Thank you again for your care, your encouragement and your prayers.
We met with the doctor today for the first time since Noah’s MRD on Friday came back negative. I may have misunderstood a bit what was told to me on the phone on Friday, so I wanted to provide some clarification as to Noah’s condition.
Technically, Noah is not yet “cancer free.” There’s a good possibility that some cancer remains in his body. The test on Friday just indicated that doctors are not able to detect any cancer in him. There’s a difference between cancer being gone and being undetectable.
Now, that doesn’t mean that Friday’s test wasn’t good. It was great. In fact, it’s the best possible result we could have hoped for, and we are immensely grateful for it. The doctor said that the body’s positive early response to this treatment is one of the best indicators of long-term success. He also continues to be thrilled at how Noah looks and acts.
Friday’s test result does not in any way mean we are done or nearly done with treatment. This path is about two and a half years long regardless of what any tests show along the way. The lengthy chemo treatment is necessary to remove all traces of cancer from his body and to set him up for the long term with minimal chances of relapse.
So, we press on. We are still about a month away from returning home, and we’re still many months away from being finished. Friday’s test result was a big first step to Noah one day being cancer free, but we are not yet able to classify him that way.
A few prayer requests:
— Pray for Bennett Coleman, a 19-month-old boy from Lafayette, La., who is here at St. Jude. Bennett has a rare extra-renal tumor and will most likely be here at St. Jude for much of the year. I spoke to his dad Ben (who is a staff member at a Baptist church in Lafayette) on the phone yesterday, and their family is looking for a place to stay in Memphis for several months. Like us, they have five family members. Like us, the housing that St. Jude provides isn’t sufficient because only four people are allowed to stay there. Please pray that the Lord would heal little Bennett, and that he would provide a place for his family to stay in Memphis for the long road ahead.
— Pray for two Carsons we have met during our time here who are undergoing treatment for the same type of leukemia that Noah has. Carson Chapman is a 14-year-old from Kentucky, and Carson Bryant is a 2-year-old from Texas.
— Thank the Lord that a third Carson — Carson Dooley — a 6-year-old from Alabama, is finished with his treatment and is indeed cancer free. Carson is one of the models we hope and pray that Noah will one day be like.
— Pray for Josiah Dover, the 9-year-old son of Charlie and Jennifer Dover, who manage the Habitat for Hope house where we’re staying. He also has ALL and is in the middle of his treatment. He and Daniel have become fast friends.
— Pray that we will be sensitive to the needs of others, like those I just mentioned. It’s easy to be focused only on ourselves during a time like this, but we want to minister to and care for others in similar circumstances.
— Continue to pray for healing and comfort for Noah. He has a spinal tap tomorrow and a big day of chemo coming up on Friday. Though the amount of chemo he’s had so far has been large, the doctor described Friday’s treatment as “a bomb” — bigger than anything so far. We’re of course concerned about the side effects, especially since this batch will be drugs he hasn’t had yet.
— Pray that baseball season would get here quickly. 😉
Thank you for your concern and your prayers.
We just got the results back from Noah’s Minimal Residual Disease test this afternoon. We were hoping for an MRD of less than 1 percent, meaning that Noah would stay in the low-risk group with lower dosages of medication and fewer side effects. The Lord has answered our prayers in a big way.
Not only was Noah’s MRD less than 1 percent — his MRD was negative. In essence, that means that they were unable to detect any cancer in his body AT ALL.
Noah will still have to continue treatment, and they can’t technically declare him to be in remission until the end of this induction phase in about four or five weeks. But the long and short of it is that Noah is cancer free. This has positive implications not only for the short term, but for the long-term prognosis as well. To God be the glory.
Thank you for your prayers. Please keep praying, because the process will still be lengthy and challenging.
We told Noah the news. He was excited for a moment, but then his attention turned to something more important: “Can you get me my pretzels now?”
UPDATE: See this post for some clarification.
Not a whole lot to report so far this week. Noah has felt well for the most part. He was originally scheduled for an MRI tomorrow as a follow-up to the leg pain he had after his last spinal tap, but they decided to cancel it, which was fine with us. He doesn’t seem to be having any more problems with that.
The next big day for him is Friday, when he will have a spinal tap and a bone marrow test that will be our first indication of how he is responding to the treatment.
Some specific prayer requests:
1. Pray that his MRD on Friday would come back at less than 1 percent, which will keep him in the low-risk group. Please pray also for a quick recovery from these procedures on Friday.
2. Pray for Noah’s attitude. He’s getting to where he doesn’t like going to St. Jude and doesn’t understand why he has to have all of these things done to him when he feels fine. Pray that the Lord would give him a peace and a settled mind about this lengthy process, that he would understand as much as he is capable of understanding, and that Sarah and I will be able to clearly communicate to him about all of this.
3. Pray for him about food and smells. The treatment does some weird things to his tastes and nose. Sometimes certain smells make him very nauseous, and we never know what those are going to be. He’s on a low bacteria diet, which means it’s sometimes complicated to prepare food for him. Sometimes he can’t have the food he wants, and sometimes there’s just not much that sounds good to him. He also can’t eat any restaurant food during this first phase of his treatment, which makes it hard when he’s craving McDonald’s.
4. He had a bit of a runny nose today. Pray that this goes away and that it’s not the start of some more serious sickness. With his blood levels as low as they are, even a cold or low fever could put him back in the hospital for a couple of days.
5. Pray for his blood sugar. His readings have been high the last two nights, and we need to find a way to keep that under control. This problem is compounded given Noah’s issues with food.
We’ve been so encouraged by all the cards, emails, messages, texts and phone calls. Sometimes I feel like I’m prayed out and that I just can’t pray any more. It’s a blessing to know that so many others are standing in the gap for us, lifting Noah to the Lord when we feel like we can’t say anything else. We are deeply grateful.
We moved into the Habitat for Hope house today, and all the kids are thrilled. They’ve already made friends with the boys who live here, and Emmalee has made friends with the horses.
“It’s going to be an adventure,” she said when I asked her how she liked the place. “This may be my best vacation ever.”
Noah has been feeling great. He had a long day of chemo treatments at the hospital yesterday, but today we only had a short visit for lab work. Tomorrow will be a short visit as well.
A few prayer requests:
1. Please continue to pray for Noah’s upcoming MRD test, which is scheduled for Friday. We’re hoping for an MRD of less than 1 percent and are praying for one of less than .01 percent. This would be a tremendous indicator of how well Noah is responding to the chemo.
2. Pray for Sarah as she gets us settled into things here at the Hope house, and as she begins to figure out how to get back into some semblance of schooling for our kids.
3. Pray for me about work. The spring semester starts on Thursday, and I’m teaching two classes. I still have much prep work that needs to be done before then, and I need some focus, concentration and large chunks of time to get everything in order for my students.
Many people have asked about what they can do to help us during this time and in the days ahead. We are so grateful for your generosity. We are blessed that our care at St. Jude will not cost us anything, and St. Jude even provides us with some weekly support for groceries. Our church has also been a blessing to us and has helped us greatly during this time.
However, we know that there will be several incidental expenses in the many months to come. If you’d like to provide any financial support, there are a couple of ways for you to do so:
1. You can send a check payable to our church, Cornerstone Community Church, and simply put “Noah Ellsworth” in the memo line. The address is: Cornerstone Community Church, 3720 N. Highland Ave., Jackson, TN 38305.
2. A second way to give is through the Noah Ellsworth Charitable Fund, which has been established with the West Tennessee Healthcare Foundation. You can make a gift online through this website, simply putting “Noah Ellsworth Charitable Fund” in the “Designation” field. Checks may also be sent to: West Tennessee Healthcare Foundation, 620 Skyline Dr., Jackson, TN 38301 (with “Noah Ellsworth Charitable Fund” in the memo line).
Thank you so much for your kindness, your concern and your prayers. The Lord has led us through this storm thus far, and we know that he will be faithful to us in the future.
They’ve decided to delay Noah’s next chemo treatment until tomorrow. From the way I understand it, evidently not enough time has passed since his last chemo treatment, so that’s why they wanted to push it back a day. We’re discovering that this whole process is pretty fluid. It sounds like tomorrow will be a fairly long day for Noah, as he’ll probably be at the hospital from about 9 a.m. until about 4 p.m.
Also, it looks like next Friday is the day for his MRD test. That’s the big one that gives us some early indication as to how he’s responding to treatment. We’re hoping for an MRD below 1 percent, which will keep him in the low risk group. We’re praying for an MRD of less than .01 percent.
Noah was discharged from inpatient care at St. Jude this evening (he’s waving goodbye in the photo). He’s had a great couple of days, showing no ill effects from his treatment. He, Sarah and Sarah’s mother will be staying at the Ronald McDonald House across the street from the hospital the next couple of days while Daniel, Emmalee and I are back in Jackson. On Friday, we’ll move to the Habitat for Hope home in Millington.
I talked to Noah on the phone tonight, and he was ecstatic about being at Ronald McDonald. He had played air hockey, Pac Man and pool in the game room and was simply tickled about it.
He’s scheduled for another round of chemo tomorrow. We’d appreciate your prayers that the side effects would be minimal.
One of the verses I’m clinging to these days:
“But Noah found favor in the eyes of the LORD.” (Genesis 6:8)
We’re praying that like the Noah of old, our Noah would also find favor in the eyes of the Lord.
Today was somewhat of a mixed bag for Noah. He had a good night last night, an OK morning and a rough afternoon. His head, stomach and legs all hurt, and it was clear that he was pretty miserable. But after a late afternoon napped, Noah rallied considerably. He played with Daniel and Emmalee for a while and was laughing and cheerful when I left the hospital to come back home for the night. A little later, he felt well enough to walk down the hall to do some crafts with volunteers who came to work with the kids (that’s what he’s doing in the picture).
He also ate well tonight for the first time in a long, long time. We’re hoping he keeps it down, especially since he has an MRI scheduled for noon tomorrow and can’t have anything to eat or drink after midnight tonight.
We’re expecting to be discharged in the next day or so as long as the MRI comes back OK.
Some specific prayer requests:
1. Pray that Noah is able to keep his food down tonight, and that he won’t get overly hungry before his MRI tomorrow.
2. Pray that his MRI shows that the fluid sac previously around his spine has healed, and that Noah will be well enough to be discharged soon. Tonight will be the 11th night for him to be in the hospital, and I think getting out should lift his spirits.
3. You can start praying now for the bone marrow test that Noah will have on day 15 of his treatment. This is a huge deal. Huge. We need the MRD (minimal residual disease) from this test to come back negative. This is the first indicator of how well Noah is responding to the chemo. Less than 1 percent is desirable, but we’re praying for less than .01 percent. Anything at less than 1 percent will keep Noah in the low-risk group, and that obviously would make us feel a lot better.
Many, many thanks for your continued prayers.