To do the math, you have to take the first 17 weeks of treatment from Phase 1 & Phase 2 + the 120 weeks of the last phase of treatment, divide that by 2 = 68.5 weeks, the halfway mark for Noah’s Total Treatment.
Now take -
the 17 weeks of Phase 1 & Phase + 51.5 weeks of Phase 3 = 68.5 weeks.
That means today, since we are in the middle of week 51, is the halfway point of Noah’s total treatment. I am so thankful to be halfway done! We are celebrating by getting discharged from the hospital today (after being here a few days with a fever).
Isaiah 41:10 “So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand.”
Noah goes to St. Jude every Monday and gets chemo in an IV. He gets chemo every night at home in a pill. And then he goes and throws people out, hits the ball, and runs home. He really should get the “game ball” every single time. What a trooper!
“Do you work at St. Jude?”
I was standing in line at the Sam’s Club snack bar today, getting ready to order lunch for my family. The man behind me in line — tall, with long gray hair and a gray mustache — saw my St. Jude Children’s Research Hospital jacket.
“No, I have a son who’s a patient there,” I replied.
The man’s name was Bill. We struck up a brief conversation about Danny Thomas, his vision for St. Jude and the amazing place it is. I then placed my order. Two pretzel combos. A pizza combo. A frozen yogurt. Two extra drinks.
“Add a hot dog combo to that,” Bill told the server. “And all that is on me.”
“You don’t have to do that,” I replied.
“Now, you’ve got enough to worry about without having to pay for your lunch,” Bill said. “I’m happy to do it.”
I brought Noah over to meet Bill, a retired fireman who lives in Medina, Tennessee. I told him a bit about Noah’s treatment regimen and the positive prognosis for his long-term health. I thanked him again for his kindness.
And I left feeling incredibly blessed by the generosity of a stranger.
As I sit here, thinking about what we were going through a year ago, I am thankful that I can hear my son in another room, playing and acting like himself. I am thankful to hear “life.” A year ago, we were sitting at St. Jude Children’s Research Hospital wondering if our son was going to die. There were several possibilities of why he was sick and we didn’t know yet what that was. Was it a virus that could cause great damage to his organs or even kill him, was something called aplastic anemia that there isn’t a great solution for, or was it a cancer that would require us to ask our other two kids to be a bone marrow donor? All of this just sickened me to think about. The only way to know for sure, was to do a procedure called a bone marrow aspirate. We got word late that night that Noah had cancer. Words a parent never wants to hear.
Noah has Leukemia (ALL), a very common childhood cancer. We live near the best children’s hospital for this treatment – St. Jude Children’s Research Hospital. A hospital that has changed ALL’s cure rate from 4% to now 94%. And a hospital that not only gives the best care, but doesn’t charge us anything that our insurance won’t pay! Seriously! You see, there is blessing after blessing IF I just look for it. God is so good to us.
I know now that eventhough I really didn’t want to hear this diagnosis, it was a blessing. The alternatives were so breathtaking, that Leukemia really was a gift. A gift that I didn’t want to receive, yet would gladly take it over the other options. A gift that isn’t easy, yet has made me more dependent on God. You see since then, I have learned how God is so gracious and kind to us. Many times we don’t even know how good God is to us, unless you look. But I look at things differently now. He protected my thoughts before Noah was sent to St. Jude. He has provided for our needs. Our church, friends, and family have wrapped their arms around us and cared for us so well. We rejoice in the normal things now – normal days, normal behavior, normal eating. He has even given us new friends that are in the pediatric cancer family like us. He has given us a Christian doctor and team to take care of Noah. Am I joyful that we are going through this? No! But I do know God that can give me the courage I need, and I remind myself daily that joy is found in Him.
Tomorrow (Tuesday, September 2nd) marks the beginning of Noah’s Reinduction 2 phase, which is 3 weeks long. This is the last Reinduction in his treatment plan, which means this is the last time he gets hammered with some strong chemo. Yes, we are ready to get this part behind us! We still have 2 years of weekly/nightly treatment left, finishing up in August 2016.
Praises – Noah has had a few days recently where he hasn’t been quite so nauseous. He still hasn’t had an appetite, but he is able to tolerate some food smells, and for us to even mention food names without it being terrible. He has acted more like himself, which is a HUGE blessing, it had been a very long time and we have missed his spunky personality.
Prayer requests – Tomorrow is a big day. Noah will not be able to eat until after his procedure, which will probably be around 3:00. He hasn’t had an appetite, so it shouldn’t be a problem, but sure enough, tomorrow will be the day he does.
He has spinal procedure at 2:00. Pray that this goes smoothly. He has had several of these, but it still isn’t easy. (He has had a traumatic spinal in the past that have hurt his legs, so it worries us.)
We are scheduled to start his chemo at 6:45 tomorrow evening and it should last about 2 1/2 hours. One of the chemos he gets will make him feel crummy all week. We are very thankful that since he is low risk, he will only receive this chemo one more time during his treatment (in 2 weeks).
Noah starts another big round of steroids. Pray that it doesn’t give him mood swings, etc. that most children have with it.
I have seen the power of prayer first hand many times. We covet your prayers. Pray that this medicine does the job it’s supposed to do while protecting his healthy cells, and causing no ill effects. Please pray that cancer doesn’t dominate our life. We have had a hard summer, and I pray that after these next 3 weeks, it starts to get easier on Noah (and us). He has been such a trooper!
Noah came home this afternoon. He’s been without a fever for a couple of days now, but his counts remain low. Thanks to everyone for praying for him during this stay in the hospital.
Sarah and I brought Noah to St. Jude about 2 a.m. Monday morning. He’d been running a low fever, so the doctor told us to go ahead and come. Turns out his hemoglobin is low, so he’ll have a blood transfusion here in a little bit. His ANC is also still at zero, which is a bit puzzling since he was on steroids and wasn’t on his oral chemo this week. The doctor thinks it could be some kind of virus that’s keeping his counts down.
So, it’s almost 4:30 a.m. now, and we’re about to be admitted. Sarah and I haven’t slept. We’re guessing Noah will likely be here at least until sometime Tuesday.
Please keep us in your prayers. We’re ready for Noah to get some kind of relief from the crummy couple of months he’s had.
Would you please pray for Noah, specifically for his nausea? Ever since the reinduction period ended about a month ago, he’s been much more nauseous than he was in the weeks before. He has trouble finding things he can eat. He’ll regularly ask for something because it sounds good, only to see it or smell it once it’s before him and not be able to eat it.
This has been consistent for about the past three or four weeks. He has thrown up several times as well. It’s frustrating for us, and I know it’s got to be terribly frustrating for him. The doctor said today that sometimes even with nausea medicine, this is just the lot for some kids throughout the duration of their treatment. Please pray that God would take away Noah’s nausea and allow him to eat and function somewhat normally.
Many thanks for your prayers and your constant words of encouragement.
6 months into this journey and 110 weeks to go! (We should finish up treatment in August 2016.) So thankful to have the past 6 months behind us, and praying that the next two years can be somewhat “normal” and fever free!
Tomorrow morning begins a three-week period of more intensive chemotherapy for Noah. We’ll leave the house at 6 a.m. Monday, and the morning will consist of lab work, a spinal tap and an MRI, for which he will be sedated. The rest of the day, Noah will get three different drugs — one of which he hasn’t had before. The day will end at St. Jude about 9 p.m., which means it will be close to 11 before he gets home. It’s going to be a long day.
Patients are normally required to stay in the St. Jude vicinity for their reinduction treatments, but they are allowing us to return home. We are immensely grateful for that. The chemo will likely have a detrimental effect on Noah’s immune system, so we’ll have to be watchful to make sure he doesn’t get a fever. We also are unsure what other side effects from this amount of chemo will be.
Noah has been feeling great in recent days. He hasn’t had to wear a mask in public, and to be around him, you’d never know that he was being treated for leukemia. That certainly makes this whole ordeal more manageable.
So, a few specific requests for Noah for the next three weeks:
1. Please pray that his MRI shows nothing of concern. We’re not expecting anything, but we’re always a bit uneasy that something could be wrong of which we aren’t aware.
2. Because of the procedure Noah is having, we won’t be able to give him his nausea medicine in the morning. He’s been a bit nauseous the past couple of days, so please pray that his stomach will stay settled until his procedure.
3. Pray that he will stay fever-free in the days ahead, especially since we are expecting his ANC to plummet as a result of the extra chemo.
4. Pray that the side effects from the chemo will be minimal.
5. Pray for strength for Noah tomorrow. I’m sure he’ll be exhausted by the time his treatment is over.
6. Pray for wisdom for us as we enter this brief phase with which we are unfamiliar. We’ll be keeping an extra close eye on Noah to see how he responds to the treatment, and we’re uncertain what to expect in this stage.
Thank you for your continued prayers, encouragement and concern. We know that the Lord has been our strong tower over these past six months, and we continue to trust his grace for us going forward.