Noah’s counts were too low today for him to get his port tomorrow or to get his methotrexate treatment. We’re disappointed about this, and he is, too. He’s getting a blood transfusion this afternoon and then coming home for the weekend. We’ll take him back on Monday to see what his counts are then.
Please pray over the weekend that his counts on Monday will be high enough both to get the port and the methotrexate treatment. We need an ANC of more than 300 for the methotrexate and more than 500 for the port.
Tomorrow Noah will head back to St. Jude for the weekend for a couple of different things:
1. His final high-dose methotrexate treatment. After a rough start with the first one, the last two treatments have gone perfectly. Please pray that this one will go smoothly as well, that he’ll clear the chemo quickly and that he’ll get to come home on Sunday.
2. His port installation. Upon Noah’s leukemia diagnosis in January, he underwent surgery to install a central line in his chest. That line is how the chemo has been administered since then. It’s high maintenance, requiring a dressing change three times a week and a daily flushing. He also can’t get the dressing wet, which makes baths difficult. On Friday morning, Noah will undergo a procedure to remove the central line and add a port instead. The port will go under his skin, and the remainder of his chemo treatments will be administered by accessing the port with a needle. It will be much easier to care for and should be much more comfortable for Noah going forward.
However, it’s a significant change for him, and he’s understandably nervous about it. For a long time he insisted that he wanted to keep his line and not get a port, but that’s just not a viable option for the next two years. So, we bribed him by offering him a new bike. That did the trick. He has a much better attitude now about getting the port, even if he is still concerned about it. His bike came yesterday, and I’ll have it assembled and ready for him when he gets home from the hospital. Please pray that Noah won’t be scared about the port and that he’ll get used to it quickly.
Noah will spend Thursday at the hospital doing routine stuff in advance of his surgery on Friday. He’ll go in first-thing on Friday morning for his procedure and then should be admitted later in the day for the rest of the weekend.
Thankfully, this is the last time during his entire treatment regimen that Noah is schedule to be inpatient at the hospital. If he gets a fever sometime we’ll have to take him in, so we expect that there will most likely be some short inpatient stays still to come, but it’s encouraging to know that this is the last one that is scheduled. From here on out, assuming that all goes as expected, everything will be done on an outpatient basis.
If you’d keep Noah’s health in your prayers going forward, we’d appreciate it. We take for granted things like fevers in our kids. Kids get sick. They get fevers. They’re typically over them in a couple of days, and we move on with life. It won’t be that simple for us if Noah gets sick. If he gets a fever, we’re most likely looking at a hospital stay of at least a couple of days, which is a major pain. So please pray regularly that Noah will stay fever-free.
Last night I was reading back over some of the tweets that had been sent to me in mid-January when we took Noah to St. Jude and when his diagnosis was confirmed. In a lot of ways, that seems like a lifetime ago. I was greatly moved to read how many people were praying for us at that time, and I was reminded of how many people have been so faithful in praying for us since then. Thank you. Our journey with Noah is far from over. We’ve still got another two years to go. The Lord has been faithful thus far, and we know his faithfulness will continue.
Noah’s methotrexate treatment this weekend went much better than the last time. So well, in fact, that we’re heading back to Jackson today and won’t have to be back at St. Jude until Friday for a clinic visit. We’re thrilled with this news, as it seems to be an indication that life will return to somewhat of a normal pace for the next few weeks. Thank you for your prayers.
While we are happy, there’s a bit of a bittersweet element to it as well. We’ll take all of our belongings with us from the Habitat for Hope house today, which means that we’re likely moving out of there for good. Living there for the past two months has been such a blessing, and we’ll miss the new friends we’ve made. We can’t thank Mark and Mylissa Horrocks and Charlie and Jennifer Dover enough for their kindness to us since January. They were truly the Lord’s agents of help to us at a time of great need, and we will never forget their generosity.
We had a great weekend at home together as a family. Sarah took Noah back to St. Jude today, and his methotrexate level is finally undetectable, so that’s good news.
We thought they might admit him today and start his next methotrexate dose tomorrow, but they decided to send Noah back home. He’ll be admitted on Thursday and have his next treatment starting on Friday, so we’ll have some more time in Jackson before he goes back into the hospital for a couple of days.
Thank you for your continued prayers. The Lord has been kind.
I wanted to post an update about Noah and a prayer request for him. I apologize that I haven’t been posting updates in quite some time. Honestly, I just seem overwhelmed most of the time and haven’t felt like it. On top of this situation we’ve had with Noah’s health, I’ve had arguably the most stressful semester during my 9+ years at Union, with incredible challenges that only compound the weight we’re carrying.
Noah has been feeling great. That’s the good news. The frustrating part is how slow he’s been to clear the methotrexate dose he got almost two weeks ago. That chemo dose was the first part of this second phase of his treatment. He got it on Feb. 28-March 1, and we were told that it typically takes two or three days for it to clear out of his system afterwards. We were hoping that we’d be home on March 3, with several days before his next scheduled dose on March 14.
Unfortunately, that’s not the way it worked out. The methotrexate has continued to linger in his body for far longer than we expected. The levels have been declining, which is good, albeit at a slow pace, which is not so good. At his last appointment yesterday, the pharmacist said we could still expect it to take several more days to clear given the rate that he was purging it.
So, that means the dose that he was supposed to get tomorrow will be delayed. We don’t know how long yet and hope to get some clarity on that tomorrow at his next appointment. We’re hoping tomorrow that the doctors will say that while the methotrexate still hasn’t cleared, it’s OK for him to come home over the weekend, and they’ll check him again on Monday. That’s what we’re praying for, and that’s what we’d ask you to pray for. Noah hasn’t been home since Jan. 10. He’s homesick, and we’re ready to have at least a couple of days of normal life.
Of course, if you want to pray that the methotrexate will be completely gone tomorrow, we’d be fine with that as well.
Thank you so much for you continued prayers for us.
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.
Every day when I walk around St. Jude, passing by other patients, God gently reminds me of how blessed we are. Would I have ever thought I would have said we were blessed to have a child with ALL Leukemia? No way. But He has continually showed me how fortunate we are. There are so many others that have worse things then we do. If you don’t know how blessed you are, just take a minute to walk the halls of St. Jude. You won’t have to go far. Not only are we going through this Leukemia journey with the Hope of Christ, but we are going through this with hope of Noah being cured. Many people don’t have that hope and for that we are extremely grateful.
Prayer requests – 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.