Archive for January, 2014
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.
Several people have asked where they can send Noah some mail. Here’s the address you can use:
St. Jude Children’s Research Hospital
262 Danny Thomas Place
Memphis, TN 38105-3678
First, a bit of background. I’ve been posting updates on Facebook but am planning to start writing here instead. Our 5-year-old son Noah was admitted to St. Jude Children’s Research Hospital on Jan. 10. On Jan. 13, he was diagnosed with Acute Lymphoblastic Leukemia. You can read a little more about all of that here.
Yesterday Noah got his second chemo treatment. He threw up a few times yesterday morning and then again once last night. His stomach is still a bit queasy this morning, but he seems to be pretty cheerful today. We are continuing to pray that the chemo would quickly and successfully attack the cancer in his body and that the side effects would be minimal.
We don’t know when we’ll be discharged at this point, and honestly, I don’t think we’re in a great rush for that. Noah is getting excellent care here at St. Jude, and we continue to be thankful for all of his doctors and nurses.
We decided yesterday that when we are discharged, our family will spend the next few weeks living at a home provided by Habitat for Hope. Though St. Jude has graciously offered for us to stay at the Ronald McDonald House nearby, they only allow four people to stay in a room. With five of us, plus Sarah’s mother who will stay with us much of the time, that wasn’t a viable option for us.
Enter Habitat for Hope, a ministry to cancer patients and their families. They have a house near Millington (only about 20 minutes from St. Jude), located on a gorgeous setting of about 50 acres. We’ll be staying in a basement apartment of the house. The caretakers of the home are parents of a child with ALL, so they understand what we’re going through. Their children are similar in age to ours. Our children are ecstatic about staying at a place with horses and with all the other amenities that come with 50 acres of land on which to play.
This was indeed an answer to prayer for us. A huge “thank you” to all who referred us to Habitat for Hope, to the organization for providing us with this housing opportunity, and to several other places nearby that also offered us housing. We are incredibly grateful for the ways we’ve been loved by so many people during this time.