After visiting friends on the second floor, I looked down and saw this. Mondays at St. Jude consists of a lot of waiting. I am so thankful we can do this together, even if it is just waiting.
DESPERATE TIMES CALL FOR DESPERATE MEASURES.
For the 4th day in a row, Noah has sent me to Target for their popcorn. Today he actually wanted popcorn, a soft pretzel AND an Icee. Yes, we are in full force of steroid week.
Along with the mood swings and emotions steroid week can bring, it also brings strong food cravings. And since my chemo patient son has a hard time finding food to eat the other 20 days of the month, steroid week gives him a chance to enjoy food and gain some much needed calories. It normally brings a lot more work on me, but I’m happy to see him eat.
Some steroid week cravings have been pepperoni, sometimes mashed potatoes, sometimes bacon, and this week seems to be popcorn (with a little bacon on the side. 🙂 ) He is SO picky and when he wants something, what he really means is he wanted it 10 minutes ago.
So you can understand how I was almost in tears when I got to Target and discovered their snack area was closed due to plumbing problems. Doesn’t Target know how huge this is for us??? We need their food and we need it now! I talked to Noah, and after he asked how close the next Target was, 🙂 I offered a few suggestions that he thought he might be able to “try.”
Now I am keeping my fingers crossed that he will like it. And thanking God for the bank that normally gives suckers to the kids, but today they just “happened” to have popcorn instead.
Even though this has happened a lot over the past 2 years, in fact too many to count, it is still something I can’t get used to seeing. But I am thankful it doesn’t happen as often as it used to.
Just 30 more weeks, Noah. We are almost done. YOU are almost done! Praying for your complete healing, where cancer will stay away forever and that you will have no lasting side effects from these terrible, life saving drugs.
Today I said words like, “Noah, leave your sister alone!” and “Noah, settle down!” Words that on today’s occasion, warmed my heart.
We celebrated Noah’s 2 year cancer diagnosis anniversary at Maggie Moo’s tonight. We talked about what we remembered in those early days and how far we have come since then.
We dreamed about what his end of treatment party might look like. We have lots of fun planning to do in the days ahead! And, we are thinking about Disney World in the fall with no medicines and no restrictions since his port will be out. We are excited and have started watching Disney movies again to anticipate the trip and so we can be ready when we see a character in the park. 😉 It feels so good to dream.
We talked about the blessings that have come through Noah’s diagnosis. The kids mentioned several of their friends from St. Jude, Noah mentioned his doctor and free Putt Putt golf. I am so thankful that they can see the blessings through the hardships.
There are lots to look forward to in 2016. And we pray for no hurdles to go over along the way!
Noah had several runners running for him this year in the St. Jude Marathon! It was so sweet to see friends and family (some who aren’t even pictured here), running in their Team Noah shirts. We feel so encouraged and loved by the time and money they have put into training and for many of their family that came to cheer them on!
Recently, Noah hasn’t been eating on Mondays. We think it’s more nerves than anything, but by the end of the day he’s pretty lethargic. He might eat something before we leave, but that’s it. Sometimes that has meant not eating or drinking from 8:30 am to 7 pm. We have tried
everything we can think of. We have taken food, we have ordered food, we let him have a milkshake or something out of the vending machine, ANYTHING! But today we are going to try something new. I have made a sticker chart for his eating and drinking. I’m praying this helps to get him over this slump. (Of course it has been steroid week, so that should help today. 🙂 )
We raised $500 for St. Jude Children’s Research Hospital. 
Why do I run? I’ve asked myself that question a lot over the past few weeks as I’ve pounded out mile after mile on the pavement, preparing for what I first planned to be six miles in the St. Jude Marathon relay on Dec. 5. Now, however, I’ve decided to go even farther – 13.1 miles in the half-marathon. I’ve never done anything even close to that before. So why am I?
The most obvious answer to that question is this: I run for my son Noah.
I run for the silly little boy with such a happy, joyful outlook on life who has endured more pain than any 6-year-old should have to. Who has suffered through dozens of needle jabs into his chest. Who has accepted corrosive toxins into his body to kill an even greater poison. Who has taken hundreds of pills. Who has spent countless hours in a hospital when he would rather be somewhere else. Who sometimes has to wear an uncomfortable mask that is hot and annoying when he goes out in public. Who occasionally misses out on fun things with friends because it’s just not worth the risk of him getting sick. Who often can’t find anything to eat that sounds even remotely appetizing. Who spent eight weeks away from home when he was first diagnosed. Who endures pain in his legs and back because of the chemo coursing through his little body.
Through it all, Noah has not lost his joy, his smile, or his silliness. He has, with grace that makes me marvel, accepted his lot without complaint or bitterness. Most of the time, you’d never know that any of the above is true of him. Noah is all boy, and he loves life. He loves Star Wars and Minecraft. He loves baseball and puppy dogs. He loves Legos and Nerf guns. He loves Monopoly and Pick-Up Sticks. He loves farting and burping.
And he loves his mommy and daddy. A few weeks ago, he went through his piggy bank and brought some money to Sarah and me – just because he loves us. A handful of change for me, and a handful of change for Sarah. As I counted the quarters, nickels, dimes and pennies, I was amazed at the result — $1.27 exactly for each of us. That wasn’t an accident. Noah had counted it out and made sure to give each of us the same amount of money.
Over the past 22 months, ever since Noah’s leukemia diagnosis in January 2014, I have, on many occasions, given thought to things I should write about our journey, about him, about those who have been such tremendous blessings to us, about our frustrations, about our triumphs. And I have written a little. Not much. I’ve often wondered why I haven’t written more. Why haven’t I felt compelled to take to the keyboard and share with others about this experience? Why haven’t I been driven to document this path for posterity?
The simplest answer I can give is that it’s difficult for me to go there. Writing about Noah’s battle with leukemia takes me back to the early days of this journey when I lay awake at night wondering if my son would die. Writing brings back memories that are painful and hard to deal with. Even now, tears fill my eyes as I struggle to find the words. Much of the time, it’s far easier to focus on the present and the future than it is to relive the past.
But as painful as it is, I don’t want to forget. The path that we’ve walked over the past couple of years has been the most difficult challenge I’ve ever faced. Through it, though, I’ve seen the Lord pour out blessing after blessing upon us. I hope, in the days ahead, to write about some of those blessings. They are, after all, memorial stones in the river of my life. What do these stones mean? I want to give an answer, however incomplete it may be, to that question.
One of those blessings, I can say with absolute certainty, is St. Jude Children’s Research Hospital. Since Danny Thomas founded the hospital in 1962, St. Jude has been on the forefront of cancer treatment and research for children. Thanks to St. Jude, the leukemia that once would have ended Noah’s life has been largely neutralized. The cure rate for Noah’s leukemia is now about 95 percent.
Sadly, not everyone’s story ends as happily as we expect Noah’s to. We’ve encountered children at St. Jude who have lost their battle with cancer. That’s why the ongoing work of the hospital is so important – to save the lives of precious children who one day might be spared.
Thanks to generous and gracious supporters, St. Jude operates without ever charging patients a dime. Dealing with childhood cancer has been challenging enough. I can’t imagine what it would be like with the addition of hefty medical bills. Because of St. Jude, that’s not something we’ll ever have to worry about.
That’s why events like the St. Jude Marathon are so important. They enable the hospital to raise the money needed not just to treat kids and cure cancer, but to do it without families ever having to pay. Won’t you join me in supporting this noble cause? Every donation, no matter how small, helps. Because of St. Jude, my son Noah is not just alive, but is full of life – with the hope of a lifetime of health ahead of him.
Why do I run? I run for Noah and for so many kids like him. I run for those who cannot, and for those who never will. And I run for those who, by the grace of God and the work of St. Jude, will one day run again.
If you look hard in this picture, not only will you see Waldo, but you will see iv pumps and wheel chairs, you might even see the back of a boys head that has been shaved from brain surgery.
St. Jude does such a great job trying to lift the spirit of the patients and their family. They have art time and movie time in the lobby, they allow companies to come in and bring donations. But their trick or treating party is the biggest event that the hospital puts on each year. Each department makes a booth and gives out handfuls AND handfuls of candy.
St. Jude knows that for their patients, a little sugar pales in comparison to what the kids are facing. They know that for some kids, they can’t get out and go trick or treating like their friends or siblings can because they may be attached to a iv pump, or they might have low counts. They know that this might be even be the child’s last Halloween. They also know that for this one day the kids that look different; the ones with scars on their heads, with no hair, or only a few strands of hair, the ones whose eyes look different or the ones that need crutches or wheelchairs, for this ONE day, these kids can look like normal kids and hopefully feel normal.
Some friends took Flat Noah on a trip to Italy. He had such a good time, he decided to stay and travel the country side. (He slipped out of the window on the train. 🙂 )