As I walked around St. Jude today, I realized how familiar these walls are becoming to us. Two months ago when we arrived, this place seemed so overwhelming to us, much like a maze. Since we have been at the hospital everyday for most of the last two months, we are now walking the halls like we know the place, even Noah. Just ask him what is in C Clinic, he will tell you.
Please pray that Noah’s Methotrexate level will come down a lot. For some reason it had increased today. This is discouraging to us. We are thankful that he seems to be doing well, but wish that he had a little break before his next inpatient dose of Methotrexate.
Phase 2 is officially here. Noah started his inpatient stay for the Methotrexate last Friday. He did well Friday, but Saturday he woke up with a fever. We aren’t sure where the fever came from. It could have been another virus that caused the fever, or possibly from the chemo. Regardless, it seems like the fever set his levels to rise. Levels that had been reacting so well to the drug, started increasing. And we still continue to watch these levels. He will probably be hooked up to a bag of fluids through the weekend, or until the levels come down. I am so thankful that St. Jude is willing to send kids home with fluids. It is a hassle, carrying the bag around and being careful not to trip on the IV cord, but it is much more relaxing to have fluids at home, rather than staying in a hospital room. And he doesn’t seem to let it get him down, he has had 3 good days!
I am a little nervous for the next round of Methotrexate next weekend. We pray that his kidneys recover quickly from all the stress from this round before receiving the next dose. And we pray next time that the drug will do what it needs to do and no more. Phase 2 consists of 4 rounds of this drug- 1 down, 3 to go.
Noah was discharged yesterday because he hadn’t had a fever in over 24 hours. He seemed to be on the mend getting over the virus, and today proved that he was doing better. His counts all looked good when we went back to St. Jude. They are still in the low range, but they are starting to recover. When we got back to the Hope house, he played and played. He played Just Dance Wii, he played hide and seek, he chased his friends, he even played outside. He felt good.
As of right now, we will end this first phase of treatment and begin the next phase on Friday. Friday will be a long day with procedures and getting admitted for a new high dose chemo drug. We will stay inpatient for a couple days until he clears it from his body.
We’re back in the hospital for at least the next 24 hours. Noah was running a fever earlier this evening, so we brought him in. Since his ANC levels are so low because of the chemo regimen, they’ve admitted him and will keep him until he’s fever-free for 24 hours. So, we’re here until Saturday night at the earliest.
Some specific requests:
– Please pray that Noah’s fever goes away and stays away so we can be discharged tomorrow night.
– Please pray that Noah has a better attitude about taking his medicine. It’s been a chore lately to get him to take it.
– Please pray for us. It’s so wearying to be back in inpatient care. We had thought he’d be here briefly tomorrow for a basic clinic visit and then not at all on Sunday. So much for those expectations. We’re nearing the end of our six-week induction phase, which we’ve been told is the most difficult part of his lengthy treatment. The end is in sight. But that also means that we are exhausted and weak. We greatly appreciate your prayers.
We aren’t sure what happened last Friday. He went from a happy, playful boy on Thursday, and the next morning was in much headache pain and very lethargic. Our doctor decided to admit Noah to the hospital that evening just to monitor him and make sure nothing was being overlooked. They hooked him up to some fluids and antibiotics and did a few tests on him. Thankfully, by that evening, he perked up and was back to himself. I don’t know if it was all the napping or the medicine that helped, but whatever it was, I know prayers were answered and our little boy was much better. In fact, he was up until 11:30 that night because he told me he napped 5 times that day. He really did!
We were told to expect to be inpatient until Monday, but the attending doctor came in and decided he was doing too good to stay. He even told me that “he was his natural self now.” He was discharged on Saturday.
Noah’s respiratory tests have come back that he does have the common cold. This isn’t a big deal, but enough to have us in isolation for a few weeks while we are at the hospital. We are still waiting on the blood culture results. But for now, the doctors really aren’t sure what happened. It could have been just the chemo catching up with him, along with getting off a high dose of prednisone. Or, they say it could have been that he needed some fluids or a stronger stomach medicine.
I’m thankful that God used this to show Noah how the medicine helped him, and how wise his doctor was in putting him in the hospital to help him feel better. We talked about this several times, because he was really upset about the whole situation on Friday. And right now, most of his medicines really make him feel sick even though they are ultimately doing their job.
“God is our refuge and strength, a very present help in trouble” Psalm 46:1. This verse has become so real to us. We are so thankful for our refuge during this time.
Earlier this month, when we were leaving St. Jude hospital, Noah said, “I don’t like St. Jude. It makes me sick!” I talked to him about his illness, how they are treating him to get better, and how we are on his “team” through all this. So, we settled on a baseball shirt. Very appropriate for this Ellsworth family.
T-shirts are $10 each, and the proceeds will benefit Habitat for Hope, our “home” here in Memphis. We have been extremely blessed to be here and continue to thank God for the ministry Habitat for Hope provides for people like us. It sure makes our time here more enjoyable, and we want to help them out a little.
Youth— XS (2-4), S(6-8), M(10-12), L(14-16)
Adult— S –XL (2x available for $2.50 more)
Shirts are pre-shrunk.
To order, please email email@example.com before February 21 and include sizes and quantities. Shipping is not included in the cost, and a shipping fee will be added. You will receive a confirmation reply with information on how to submit payment.
Today was a difficult day for Noah — the worst he’s had in some time. He was nauseous this morning, lethargic and had a bad headache. He’s not running a fever. The doctor decided to admit him as a precautionary measure, and we’ll most likely be in the hospital until Monday at the earliest. He’s on antibiotics, and they did a respiratory test to determine whether he has any kind of cold or flu virus. We should have the results from that tomorrow.
He didn’t look good this afternoon when I got to the hospital, but he has rallied over the past hour or so. He ate some supper, he’s cheerful and he looks a lot better. That’s encouraging to us.
Please pray that God would destroy whatever is bothering Noah and making him feel bad, so that he can get out of the hospital quickly.
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.