A Better Week

Last week was not a great week. Jack was scheduled to begin the next four week segment of the consolidation phase of his chemotherapy. Unfortunately, his ANC (a measurement of his immune system) was too low, so chemotherapy was delayed a week. And for most of the week, Jack continued to struggle with migraines following his spinal tap the previous week. On top of that was the fact that it was supposed to have been the week that we took Jack to college. He actually seems to be dealing fairly well with that…probably better than his parents. 

This week got off to a better start. Though still dealing on and off with headaches, they don’t seem to be as persistent or severe. And when he went in for chemo on Tuesday, his levels were well above the minimum to begin. 

So if you’d like to pray for us, here’s some direction:

• This week and next, Jack is scheduled for chemo on Tuesday, Wednesday, Thursday & Friday. The following two weeks after that he has chemo on Tuesday. The goal is that at the end of this phase, his minimal residual disease (MRD) will be below 0.01%. This is a molecular measurement of how many of his blood cells are still leukemic. If he ends up below 0.01%, then his chemo treatment will continue with him in the “intermediate risk” category. If it is above that level, then Jack gets moved into a “very high risk” classification, which would mean that the course of his treatment would have to become even more aggressive. We are really praying to avoid this because of the potentially serious and long term side effects and the radiation required at the "very high risk" level. 

• Please pray that side effects for Jack during the next four weeks of chemo would be minimal and easy for Jack to deal with. 

• As the school year gets into full swing, we are concerned that Jack’s spirits might take a dip, so please be praying for that. 

• The school year is also beginning for Caroline. If you wouldn’t mind, please also be praying for her as she begins high school. It can be hard following in the footsteps of an older sibling, and it may be especially so if teachers and students are all constantly asking about him and how he’s doing.

Thank you once more for all the prayers and support that so many of you have so steadfastly offered!

Prayer Requests for the Week

This cancer road is a long one. We are so thankful for your encouraging words and prayers. Here are some of the requests on our hearts this week:

• that Jack’s post spinal tap headache would go away (he’s had it since Tuesday)
• that his counts would be high enough to continue the next four weeks of chemo
• that Jack (and Pete and I) would be encouraged even as we watch his buddies and Grace head off to college this week and begin all the adventures we had been planning for him 
• that we would find joy in these last days of summer with our sweet Caroline before she starts her freshman year of high school

One last game of Settlers of Catan for the summer

A New Project

Mission accomplished. Since Jack's great friend Brian Caine started the Postcards for Jack project, he has officially received postcards from all fifty states (not to mention a number of foreign countries). Thanks to everyone for all your help!

With the accomplishment of this goal, we're starting a new project. Actually, we've already started it, but now we're asking for your help. If you'd still like to send Jack a postcard with an encouraging message, please go right ahead! We'll even continue to display the postcards and track them as they come in. But here's the plan for the new project:

If you know Jack at all, you likely know that he is a HUGE sports fan! Sure, Cardinals baseball, Blues hockey, and Mizzou football & basketball are his favorites, but he appreciates and enjoys all kinds of sports.

We thought it would be neat to see how many folks from the world of sports we could get to send Jack notes of encouragement. Here's how you can help: If you have contact with any (current or former) players, coaches, or other sports-related individuals that might be willing to send Jack a note of encouragement, would you please consider asking them? We have a form letter of sorts that we can email you if you have someone you'd like to forward it to. Just let us know (pcscrib@hotmail.com).

If you'd like to keep up to date on who ends up reaching out to Jack, we've set up a page to keep track of that too!  And thanks again for your help in encouraging our son to #JackUpCancer!

An Update

Well, it was a long, busy day for Jack & Erin today. In the end analysis though, it was a good day as we saw a number of our prayers answered.

Here's the rundown of Jack's day:

• He had his levels checked, and while his platelets were low, most of his other numbers were holding relatively well.
• He received platelets to prepare him for the spinal tap.
• He got an x-ray done on his chest to check on his pneumonia and help determine if he could get the chest tube removed.
• He received chemo via a spinal tap along with the requisite hour recovery time on his back to help prevent a post spinal-tap headache (which he thankfully avoided!).
• It was determined that the fluid had drained enough that he was able to have the chest tube removed, thankfully without any pain.
• He received two more kinds of chemo that took about two hours.
• Finally, another x-ray was taken to check out his lung post chest tube removal.

All in all, Erin & Jack were at the hospital from before 9:00 until after 5:00, but we're thankful that things went well and that at the end of it all, Jack got to come home! It’s hard to express how much we appreciate the doctors, nurses and staff that care for Jack with such knowledge, skill and compassion as he fights this battle. God bless them.

Prayer Requests

Here are some quick prayer requests for this week:

• That Jack's pneumonia would completely clear up.
• That they'd painlessly remove Jack's chest tube and require no further treatment/procedures/surgery for fluid around his lungs.
• That Jack's spinal tap on Tuesday would not lead to a post-spinal tap headache. This is the third of four spinal taps in four weeks, and the first two have gone well. Let's keep the streak intact!
• That Jack's counts would be holding strong when they're measured on Tuesday, and would continue to hold relatively strong through his treatment.

If you wouldn't mind, please also join us in praying for Charlie, Nikolas & Jayson, three little boys who are fighting the same battle as Jack.

Thanks so much for your faithful prayers on Jack's (and our) behalf!

A Little TV Time

This past Thursday, fellow Mizzou J-School grad Jonathan Deutsch of NBC25/Fox66 came out to the Michigan Mudcats' final game to do some interviews for a story on Jack. That story aired tonight.

This Week's News

This past week, Jack's oncologist referred him to a surgeon to take a look at the pneumonia in his lung and consider treatment options. Friday, the surgeon determined that because the fluid was loculated (in a pocket) Jack would need a tube inserted in his chest to drain the fluid from around his lung over several days. So Monday, in addition to his weekly spinal tap for chemo, Jack will have a chest tube put in.

There are a couple items on the more positive end of the spectrum:

• Jack actually seems to be feeling as good as he has in quite a while, and for that we are very thankful!
• Monday night NBC25/Fox66 will be running a story on the Postcards for Jack project. The story will be on Fox on their 10:00 newscast and air on NBC on their 11:00 newscast. The story will likely run during sports.

Prayer Requests: 

1. That the surgical procedure inserting the chest tube would go smoothly and without pain, and that the tube would be effective in quickly draining the fluid from around his lung, and that antibiotics would eliminate the pneumonia and protect Jack from any further infection.
2. That the spinal tap would go smoothly and that Jack would avoid any post-spinal tap headache.
3. That Jack wouldn't have any negative side effects from the chemo this week (Monday, Tuesday, Wednesday & Thursday), and that he might continue to feel relatively good.

Taking the Field

These last six years, Jack's involvement with the Michigan Mudcats baseball team that I've helped coach has truly been a highlight. Most of his best friends have been on the team with him, and we've all spent a ton of time together on the diamond throughout their middle school and high school years. In addition to that, our families have spent a lot of time together, and these young men and their families have been among those who have been Jack's (and our) greatest encouragers over the last two months.

Tonight the Mudcats won the final game of their existence, and in the process clinched a league championship. It was definitely a bittersweet occasion. Without question, finishing business as champs is a great way to go out! But mixed with the joy of accomplishment were two realities: 

1. Jack hadn't been able to play this season.
2. The game marked the end of a wonderful chapter in all of our lives.

We couldn't do anything about point number two, but the best moment of the night came when we at least took a symbolic swing at point number one. At the start of the game's final inning, Jack took over at first base for one pitch (which our pitcher dutifully made sure was nowhere near the strike zone where it might be hit). We then removed Jack to the applause of the crowd, both teams, and even the umpires.

The videos below capture different aspects of the moment, showing it from two different angles.

 

Home Again (Again)

A case of pneumonia landed him in the hospital for his longest stay to date at eight days, but finally Jack (along with Erin, who had been staying at the hospital with him) is home. After being admitted to the hospital on four separate occasions for 26 of the last 51 days, you can hardly imagine how great it is to have all of us home under one roof.

He started the second ("consolidation") phase of his chemotherapy on Monday, a week later than originally planned. Part of the treatment was a spinal tap, and we are very thankful that Jack did not experience any post-spinal tap headaches. The phase will involve two four week regimens, with a pause in between to allow his levels to rebound.

There was a concern that they would need to drain the fluid from his lung for a second time, perhaps even needing to insert a chest tube for drainage, but thankfully Jack was able to avoid that before heading home. That said, they are still keeping an eye on things, and he will be visiting a surgeon on Friday to check on his lung and consider what procedures might be necessary. In the meantime, he is on oral antibiotics at home to fight the pneumonia.

Thank you once again for our continued prayers and for your words of support!

Prayer Requests for This Week

Monday Jack is scheduled to begin the second phase of his chemotherapy (called “consolidation”). Actually, he was scheduled to begin the phase last week, but has been in the hospital fighting pneumonia since Tuesday. They drained almost a liter of fluid from his lung Thursday, and may drain some more tomorrow.

If they do drain his lung again, our prayer is that it would be effective and as pain-free as possible. The first time Jack had this procedure, it was extremely painful.

We also are praying that Jack would get to come home from the hospital tomorrow after his chemotherapy Monday.

Part of consolidation will be a spinal tap each of the next four weeks (starting Monday). Please pray that he will be headache-free afterwards.

Perhaps most significantly, we are praying that the consolidation phase would be effective, reducing his percentage of leukemic cells from 1.0% to 0.01% over the next couple of months. This would enable Jack to stay in the “intermediate risk” category. If this doesn’t occur in this next phase, he would move into the "very high risk" group, which would mean more complicated treatment that is also potentially more difficult and dangerous. The encouraging news is that the doctor is very hopeful that Jack will meet this goal, but we'd appreciate all the prayer support we can get!

Hotel Hurley, Take Four

You know you’ve had too many stays at Hurley when you walk onto the pediatric floor and all the nurses exclaim in unison, “Hey, Jack’s back!”

Sigh. Hurley nurses are awesome but we really hadn’t planned on seeing them today. We came in to the oncology clinic this morning to begin the eight week consolidation phase of Jack’s chemotherapy. However, after an X-ray to try to determine the cause of Jack’s back pain, we discovered he has pneumonia. So chemo has been put on hold and Jack has been admitted to the hospital so he can have IV antibiotics. They’ll do another X-ray on Thursday and if the pneumonia is under control, he’ll have a spinal tap and start four days of chemo then.

It’s looking like we’ll probably be here until Sunday. Jack is super disappointed to miss cheering for his Mudcat teammates at their tournament in Grand Rapids this weekend, but his mantra from the beginning has been “Let’s get this done!” so we’re pushing through at Hurley for now.

Please pray that the pneumonia would be under control by Thursday so Jack’s chemotherapy won’t be delayed any longer. Thank you!

Making Progress

We are so thankful to report that Jack’s platelets and ANC jumped up to 91 and 1095 respectively so he is good to go for the next 8 weeks of chemo! Never thought we’d be celebrating that but Jack is determined to push through and #JackUpCancer, and so are we.

We are also really encouraged that the doctor has a game-plan hopefully to relieve Jack’s back pain. He saw a DO today at the clinic who worked on Jack’s back a little bit. He wasn’t able to do all that he wanted today because Jack’s platelets are still too low but Jack will see him on Tuesday morning before he has a spinal tap and chemo when his platelets are higher.

We so appreciate all of your continued prayers, meals and kind words (and the body pillow). Thank you Eatons! We wanted to especially thank Jack’s friends who have been a consistent support and encouragement to him even during their busy teenage lives. I can’t tell you how it blesses my heart to see Jack grinning and laughing during a game of Catan with the guys or a movie with Grace. Those smiles have been few and far between these days.

Prayer Requests

Jack has been struggling with pretty bad back pain that is really slowing him down. We're not really sure what is causing it, which concerns us. Please pray that the doctors would have wisdom in terms of diagnosing and treating it, and ultimately that the pain would go away.

Jack's platelets and absolute neutrophil count (ANC) are lower than they need to be in order to proceed with the second ("consolidation") phase of chemo. Jack's attitude from the beginning has been, "Let's get this thing done," so while we appreciate the break from chemo on the one hand, it really is our desire to get back at it. Please pray that his levels would be up in time to restart chemo again on Tuesday.

Jack has lost a lot of weight, most of which is muscle. His strength, energy and endurance have all been way down. Please pray that he would rebound in these areas. And throughout this process, please pray for protection from infection as his weakened immune system leaves him very vulnerable.

Thanks so much for your love and support, and especially for your prayers.

Jack is in Remission!

"Not a good way to start the day." Those were Jack's words as we prepared to head out the door. He had been awakened in the middle of the night with severe back pain. It had kept him up for much of the night and it wasn't getting any better. We headed to the hospital, Jack wincing with every bump the car hit.

But Jack's aching back wasn't the reason we were returning to Hurley. Today was the day Jack finished the "induction" (first) phase of chemotherapy, and hopefully the day we received word that he was in remission (signifying that less than 5% of his blood cells were cancerous).

We had been very tentative about getting our hopes up. At an appointment on Monday, Jack's levels were lower than the doctors wanted, and his chemo nurse was clearly concerned and tempering our expectations. And now, Jack was having serious and mysterious back pains. On top of that, this morning he was getting a spinal tap (which caused a week-long debilitating headache the last time he got one) along with the bone marrow test that would be used to determine if he was in remission. Though praying for the best, we were far from optimistic.

Suffice to say, we were thrilled when Dr. Onwuzurike walked into the room this afternoon—exactly one month to the day after informing us that Jack had cancer—and told us, "I only have good news for you." She went on to explain that we were going to have to wait a day for the official lab results to come back, but from looking at the slides under a microscope, she said she was very confident that Jack is in remission! Beyond that, she was very pleased with a number of indicators that suggest that he is progressing well.

He still has a long road ahead with a lot more chemotherapy, and we won't know the exact course of treatment going forward for another ten days, but the news today was as good as it could have been! Thank you once again to all who have been praying for Jack, and thank you to the doctors and nurses who have done such a wonderful job of taking care of him!

Postcard Project Progress

The Postcards for Jack project is going great so far. If you'd like to see the wonderful collection of postcards Jack has received, simply click here.

Praying for Jack

We are truly thankful that Jack is feeling a little better this week. This is Jack's last week of the induction phase of his chemotherapy. The goal has been that he would be in remission (less than 5% of the cancer cells remaining) at the end of this phase.

He has a spinal tap and a bone marrow test on Thursday to see if he is in remission and to determine what his risk level is for the next phase of chemo. His blood counts aren't where the doctors want them to be, but we are asking the Lord for his mercy.

Would you please join us in praying for these two things:

1. Jack would be in remission
2. He would not have a post-spinal tap headache

Postcards for Jack

Brian, one of Jack's best friends, came up with an idea to help keep Jack's spirits up. He is spearheading this project, and has shared about it via social media in hopes of spreading the word. Here's what he wrote:

This past month, a very close friend of mine named Jack was diagnosed with acute lymphoblastic leukemia (ALL). Jack and I walked together at our high school graduation less than a month ago and now he is fighting for his life against this dreaded disease. To help him with his fight against cancer, some friends and I are hoping to start a special project to encourage him during his battle. This project is called Postcards for Jack, in which we hope to have a postcard sent to him from all 50 states (or anywhere in the world!) with an encouraging message written for him.

If you have a chance, I ask that you please share this with family, friends and anyone else you may know. If you are willing to send a postcard to Jack, please send it to the following address:

6100 Richfield Road Flint, MI 48506

Thank you for sharing your words of encouragement and lifting up our spirits. Your support in this way will help give Jack even more strength to keep up the fight! #JackUpCancer

If you'd like to follow Jack's postcard progress, the map below shows from what states Jack has already received postcards. And click here if you'd like to see the postcards themselves. Whether your state has reached out to him or not, we're sure he'd love to hear a word of encouragement from you!

Baseball Brotherhood

We are so thankful for the support of Jack’s baseball teammates! One of them, Elijah, came up with the idea of getting wristbands to show solidarity in support of Jack. Go, Mudcats!

“A friend loves at all times, and a brother is born for adversity.” (Proverbs 17:17)

Thankful to Be Home

After a 7-day/6-night stay at the luxurious Hotel Hurley, Jack is back home! And while we couldn’t be more pleased with the nurses, doctors, and other medical professionals there, we are more than a little thankful to have him back and feeling a little better! Thank you to all who continue to pray for him.

Back to the Hospital...Again

Jack woke up Monday feeling really off: lightheaded and his heart racing, so the doctors made an appointment for a blood transfusion on Tuesday morning. When we got there though, he had a severe headache, was nauseous, and had intense stomach pain. Dr. Saah said that he was staying with her until at least Sunday.

It was a bad week. Doctors couldn't figure out the cause of Jack's ongoing headaches or stomach pain.Through it all, he had chemo on Wednesday, a CT scan, an MRI, and chemo again on Saturday. Thankfully, Dr. Saah found just the right medications for Jack's migraine and stomach pain. He is finally feeling a little better and ready to go home today.

Back to the Hospital

Jack was scheduled for a spinal tap and another round of chemo Wednesday. Unfortunately, when we got to the clinic, we discovered that he had lost 35 pounds and would have to be admitted. To make matters worse, Jack woke up with a terrible post-spinal tap headache, and ended up flat on his back in the hospital until Sunday. During this time, he was also suffering from what doctors thought was the initial infection.

Although the last two weeks have been really hard, we are thankful that Jack came home today, which was exactly what Pete wanted more than anything else for Father's Day!

A Little Bit of Normal

It was great for Jack to get to hang out tonight with his Michigan Mudcats teammates! Even though he can't play, it was wonderful to be with the guys!

Back Home!

A second round of chemo in the books, Jack is back home and actually feeling pretty good. Ready to #JackUpCancer and #BeatLeukemia!

A Visit from Friends

The nurses at Hurley are beyond compare! They went the extra mile today to disinfect and bring extra chairs to the game room so Jack could see his friends. And we are thankful that Jack had such a great group that came to visit him today at the hospital. It was so good for Jack to have at least some semblance of normalcy for the first time in days!

How in the world did we get here? (part two)

(click here for part one)

When Jack was a little boy, I read a parenting article that said you should give children choices. "Would you like to put your coat or your shoes on first?" "Would you like to clean up your toys now or after lunch?" But there was no pulling one over on Jack. He'd look me square in the face every time and say in his sweet toddler voice, "Choice three, please."

That's just how we felt on Monday. Jack's pediatrician and the doctor in the ER thought he was suffering from hemolitic uremic syndrome (HUS). But when Dr. Onwuzurike, the pediatric hematologist/oncologist, spoke with us that afternoon, she suspected something different: leukemia.

We desperately wanted choice three, please.

A bone marrow test Tuesday confirmed Dr. Onwuzurike's suspicions, and the floor dropped out from under us. She was very confident that Jack would be able to experience a full recovery with chemotherapy, though the next three years of his life would be very different than what we had dreamed and planned. Miami University would be on hold for a year. Jack was incredibly brave and resolutely determined. "Let's get this done," he said.

Things happened incredibly quickly from that point. By Wednesday afternoon, Jack had surgery to install a port in his chest, a spinal tap to test for cancerous cells in his brain and spinal cord, and had completed his first round of chemo. He would stay in the hospital through his second round of chemo Saturday.

How in the world did we get here?

The second week of May, amid AP exams, a varsity baseball tournament in Traverse City and studying for his very last high school finals, Jack came down with a stomach bug. Of course, in typical Jack fashion, he pushed through, going to baseball practice with a bottle of Imodium and Senior Walk at Myers Elementary with a pack of Tums. After waiting it out for two weeks on the suggestion of the pediatrician, he still didn't seem to be getting any better. On the morning of graduation, I took him in to see the doctor. She ran a myriad of tests and suspected Jack had probably picked up a virus. Test results would be back on Monday.

Jack had been feeling really crummy but the evening of graduation, he felt significantly worse. His color looked awful and we weren't sure he'd be able to make it through the graduation ceremony. But he was determined not to miss a minute and rallied enough to talk us into letting him go to the all night postgrad party, as well. Looking back, we are so grateful for God's hand of protection on Jack. Saturday, he caught a line drive off his index finger during practice, and it bled profusely. He went on to play in two district playoff games later that day. On Sunday afternoon, he put on a brave face and sat through his graduation open house eating very little of all his favorites. By Sunday night, his ankles had begun to swell and we were very worried.

Monday morning I called the doctor to find out test results and to let her know Jack was much worse. She called me back 30 minutes later and told me to take Jack straight to the ER at Hurley Medical Center, to have him admitted, and to not take "no" as an answer.   

(click here for part two)