At Long Last

A Long Overdue Update

Haven’t posted anything here in quite a long time, but figured it was time for an update. After all, it was three years ago today that it all began. Erin was talking to Jack’s pediatrician on the phone. Jack had not been feeling well, and they had gotten back results from the blood tests that they had run a few days before. She said we needed to take him to the emergency room and have him admitted. Immediately.   

If you are reading this, you likely know that Jack was diagnosed with leukemia, and has been undergoing chemotherapy ever since.

In addition to the ordinary physical toll that chemo takes, there have been other consequences along the way: He had to wait an extra year before pursuing his studies at Miami (Ohio) University. Then, after finally getting to go to school for a little over a semester, all students were sent home during his second semester due to COVID. This past academic year, students were allowed to return to campus, but because Jack is immunocompromised, he had to continue taking classes online from home.

We are so proud of him as he has found ways to involve himself in various campus organizations long-distance during his first two years of college, and has managed to earn a 3.95 grade point average, even amidst the physical and mental rigors of chemotherapy.

Now, at the three-year milepost, it is starting to feel like he is turning toward the homestretch of this marathon. Chemo is scheduled to continue until mid-October, when, Lord-willing, he will get to ring the bell signifying the conclusion of his treatment. Despite a lot of hiccups along the way (especially in the first year of his treatment), Jack is right where he is supposed to be at this point. Please be praying for his continued physical, mental, and spiritual well-being. It has been a long, hard race, but the Lord has held him throughout, and we look forward to his continued care.

Please be praying for Caroline, as well. One of the memories forever burned into Pete's consciousness is that of picking her up at school that day (she was finishing up 8th grade) and having to tell her the news about her brother. We couldn’t be more proud of the smart, kind, talented, wonderful young lady that she has become since then, but it definitely grieves us that her entire high school experience so far has been marked (and to some degree, overshadowed) by the events that followed from that day. We truly hope that her senior year can be all that she dreams of and more.

Thank you all for your love, your support, and your prayers. We can’t wait to celebrate with you in October!

Arrived

Jack is settled into his dorm room at Miami and we’re back home after getting him all moved in. Miss him terribly already, but thrilled for him and all the adventures to come!

We Stand for Cookie...and He Stands with Jack!

Check out the video that Cleveland Indians pitcher Carlos "Cookie" Carrasco posted to Instagram. As he recovers from leukemia, he's not currently pitching, but here he was keeping busy earlier this morning sprucing things up for the Indians’ game this afternoon against the Red Sox. What was really awesome to see though was that he was still wearing the “WE STAND TOGETHER” leukemia awareness bracelet that Jack gave him a couple weeks ago when we met him!

View this post on Instagram

Getting everything cleaned for the game. Let’s go TRIBE @indians @newbalancebaseball @anniebananyyy

A post shared by 🇻🇪Carlos Carrasco🇻🇪 (@cookie_carrasco) on Aug 14, 2019 at 9:09am PDT

Cleveland Rocks!

For the second straight Friday, we had a great baseball adventure! Back in the spring, old friend Brian Hendrickson reached out to the Cleveland Indians to see if they would do something for Jack. They very generously sent him a nice gift package including an autographed picture of manager Terry Francona in addition to a couple Indians t-shirts.

Jack and his new signed Carlos Carrasco jersey

We thought that this was very nice of them, but much to my surprise, Curtis Danburg, who is the team's Senior Director of Communications and (as best we can tell)  one of the nicest folks you could hope to find, followed that up with a phone call inviting Jack and our family to come to a game of our choosing. This Friday's game fit perfectly between chemo treatments, family travels, and heading off to college. It was also of great interest to Jack because it was an opportunity to see Albert Pujols, Jack's favorite player dating back to the days when Pujols played for the Cardinals and we were in St. Louis. In fact, it was in emulation of Pujols that Jack played first base and has always selected uniform number five when given a choice!

We arrived at the ballpark about 4:00, and Curtis met us with four Indians caps and a bag with two baseballs in it for Jack to get autographed. He then took us down to the field, where the Indians pitchers were tossing. Once they got done, he brought over Carlos Carrasco. "Cookie" (as he's known) has been one of the top pitchers in the American League the last five years, with an ERA of 3.27, averaging over ten strikeouts per nine innings pitched. Earlier this season though, he was feeling lethargic before ultimately being diagnosed with leukemia.

Cookie and Jack

It was a great encouragement for Jack to meet a big leaguer battling with leukemia, and working hard to get back on the field. As Carrasco put it, "I like to say that I may have cancer, but cancer doesn't have me."  

Carrasco gave Jack a signed jersey, and autographed both a baseball and a card that we brought.

After meeting with Carrasco, we stayed down on the field while the visiting Los Angeles Angels took batting practice. This was a real treat in part because we got to see Mike Trout, who is generally considered the best baseball player in the world. The ball did indeed jump off his bat in a way that was different than other players!

After batting practice, we were able to get Jack a couple more autographs: Angels outfielder Justin Upton signed a card we brought and Caroline got Trout to sign a baseball.

Carrasco wearing Jack's bracelet
for the ceremonial "first pitch"

One unplanned surprise came when they announced that the young man throwing out the first pitch was a 19-year old who four months ago was diagnosed with acute lymphoblastic leukemia (just like Jack). The Indians appropriately had Carrasco catch the pitch, and we were heartened when we noticed that he was wearing the bright orange "WE STAND TOGETHER" bracelet that we had given earlier in the day! 

The Indians provided us with wonderful seats and we thoroughly enjoyed the game as the home team won handily, but we also got to see the great Trout hit a home run in his first at bat. 

After the game, they had a fireworks show scheduled celebrating the 50th anniversary of Woodstock. As the game was winding down, we were commenting to one another as to how we were going to need to move because the overhang above us was going to obstruct our view. No sooner had we begun to discuss this than we received a text from Curtis asking if we were staying for the fireworks, and if we were, would we like to watch them from the visitors' dugout? Of course we were thrilled to take him up on the offer! It was a great show and a fabulous we to top off an unbelievable experience at the ballpark! 

In the dugout post-game for fireworks

Fireworks at Progressive Field

Mike Trout and Albert Pujols stride to the batting cage pre-game

Trout signs for Caroline

Mike Trout's autograph

Carlos Carrasco 59

 

Take Me out to the Ballgame!

Last year when the Cardinals came to Detroit, Jack had a really neat experience when he got to meet Cardinals pitcher Adam Wainwright and Cardinals manager Mike Shildt. What made it even better in the eleven months since is the fact that Shildt has been very intentional in staying in touch with Jack, regularly checking up on Jack's progress via text or phone. He also told Jack that if he got back to St. Louis and wanted to come to a game, to let him know and he would hook up our family with tickets.

We had a wonderful week in St. Louis, spending time with family, getting to see and touch the Stanley Cup, seeing Footloose at The Muny, going to Grant's Farm, and eating at some of our favorite restaurants, including Imo's, a dinner with the extended Scribner clan at Rich and Charlie's, a dinner at Cunetto House of Pasta on The Hill, and (count 'em!) four trips to Ted Drewes.

Our favorite ballplayer chats with our favorite manager

In Jack's estimation though, we saved the best for last, going to the Cardinals game on Friday night. Mike told us to get there by 4pm and he arranged for us to have field passes to watch the Cardinals take batting practice. While we were watching, he took time to come over and talk to Jack and the family, and was very encouraging, as he always seems to be!

As a promotional giveaway, we each received a jersey from one of the 2004 NL Champion Cardinals who were being honored over the weekend. During the game, we were able to catch up with Pete's childhood friend, Craig Korte, as well as longtime friend of our family, Zach Smith.

As for the game itself, it was a thriller. With the Cardinals trailing 3-2 in the bottom of the eighth, Paul Goldschmidt hit a three-run home run to put the good guys on top to stay!

We followed the game up with a late night visit to Ted Drewes. On our way back to Grandma's house, Jack commented that this was just about as close to a perfect day as possible. As his parents, and given the way the last fourteen months have gone, I'm sure you understand that this was music to our ears!

The Cardinals welcome the Scribners to the game!

Preparing for College

"The most beautiful campus that ever there was."

Poet Robert Frost attended both Harvard and Dartmouth. He no doubt set foot on countless other campuses as well. When he uttered the words above though, he did so describing the campus of Miami University in Oxford, Ohio.

This week, we made the five hour trip south to Oxford so Jack could go through summer orientation and register for classes for the fall semester.

While we were there, he not only registered for classes, but we met with a number of people who will be helping Jack navigate the waters of being a college student while undergoing treatment for leukemia. I think we all feel at least a little better as a result, and the whole thing seems a tad less scary, although still overwhelming at times.

Meanwhile, Jack will receive chemo Thursday as he continues to progress toward the end of "frontline treatment." This phase should end next month, with Jack then moving into what is called the "maintenance" phase of treatment. In that phase, he will take oral chemo daily, require weekly monitoring of his levels, and will come home each month for IV chemo until October of 2021. If things go according to plan though, it should be a less rigorous phase than the previous phases. Please be praying for Jack that this would indeed be the case, and that his transition to college after a year off would go smoothly.

Stanley Cup Champs!!!

Cheering the Blues on to a Stanley Cup from our living room

The last year has definitely been a hard one, but we got a little bit of a pick-me-up this spring watching the St. Louis Blues battle throughout the Stanley Cup Playoffs. We'll take anything that puts a smile on Jack's face, and the Blues winning the Stanley Cup in thrilling fashion definitely did that! It was the franchise's first title in 52 seasons, and while we may have been 550 miles away, we're pretty sure the cheering emanating from our house could be heard all the way back in St. Louis!

Last season in Detroit

It was just last season that Jack got to go to his first Blues game, when we made the trip down to Detroit to watch the Blues knock off the Red Wings. Since then, his passion for the Blues has only grown, and while we all wish that he could have been away at school this past year, getting to watch games with him has been a small but special joy. Memories were created and will forever be cherished!

One Year

One year ago today was the day that forever changed our lives. It was around 9am when Erin called me at work to let me know that she had spoken with Jack’s doctor. The blood tests they had run a few days earlier had yielded some disturbing results and she wanted us to take Jack to the hospital immediately.

I sped home to get them and drove them to Hurley. On the way, Jack asked us if this was really serious. We didn’t know what exactly was happening, but in an effort to reassure him, I said it was probably the kind of thing that if we didn’t do anything it would be very serious, but we were going to get it taken care of. Little did we know how serious it would be. Jack was diagnosed with leukemia the next day.

This past year since that day has had a surreal dual nature. On one hand it seems like the crazy-busy weekend that preceded that day (with out of town company, graduation, baseball district tournament, Jack's open house) was just yesterday. Simultaneously, it seems like a completely different lifetime. And in many ways, it was.

Today in my “Facebook Memories,” a video popped up that I had posted one year ago today. It was of a song from Andrew Peterson that begins with these words:

Do you feel the world is broken? (We do)
Do you feel the shadows deepen? (We do)
But do you know that all the dark won't stop the light from getting through? (We do)
Do you wish that you could see it all made new? (We do)

Today, a year later, we do believe that we will one day see it all made new, but that does not negate the world's brokenness and the depth of the shadows that we all too keenly feel now. Thank you so much to so many who have stood by us over this past year.  In many ways your love and support has served as rays of light that have tried to pierce through the darkness. We long for your continued prayers.

Going forward, we continue to trust the One who is worthy, even when we can't understand (and, frankly, really don't like) what it is He is doing.

The Good News and the Bad News

As we mentioned in our last post, after a delay of almost two months, it looked like Jack was going to start chemo again. Well, we've got some good news and we've got some bad news. 

The good news: Jack did indeed start chemo again.

The bad news: Jack did indeed start chemo again.

It's good news because it was a necessary step, and the longer it was delayed, the greater the chance of a relapse. It's bad news though, because with the chemo comes the side effects of chemo. So over the last ten days or so, Jack has on and off been feeling pretty crummy.

He is set to undergo chemo again this week (levels-dependent), so please be praying for him that:

• He would be able to proceed with chemo
• That side effects would be minimal

Thanks once again!

Progress...

We are very happy to report that Jack’s counts are slowly coming up. Yesterday, his platelets were high enough to start the next phase of chemo but his ANC wasn’t quite there. He goes back in tomorrow (Thursday) to see if his counts will finally be high enough to have a spinal tap and chemo.

We have not received the bone marrow biopsy results yet but Jack’s doctors are thinking that his low counts these past few months might be due to a rare reaction to a medication he was previously taking. Jack would be just the third reported case to have low counts due to this medication. He is testing all the skills and wisdom of his nurses and doctors but we are so grateful they have been up to the task. These past few months have been frustrating and scary but we are really hoping Jack will soon be back on track.

Please pray that he will be able to start this next phase of chemo, that the side effects would be minimal and that his counts would be able to recover better during this treatment phase.

Counts Still Low

Jack had an appointment yesterday and his counts were still extremely low, so he had a bone marrow aspiration and biopsy. Results from the bone marrow aspiration came in today and we are very thankful that he is still in remission and has not relapsed. It will be several days before the results from the bone marrow biopsy, which tests for a lot of other scary things, will be available. Thank you so very much for continuing to pray with us.

Update

We didn’t get the news we wanted today. Jack had his bloodwork done and all of his counts are now falling. His platelets were so low that, even after Thursday's IVIG treatment, he had to get a platelet transfusion this morning. He is scheduled to go back to the clinic on Friday to check his counts again and possibly receive another transfusion if the trend continues. 

If his counts have not improved next Tuesday, he will have another bone marrow aspiration and a biopsy to try to determine why his bone marrow is failing. Please pray that God would encourage Jack’s heart and hold him fast, that his counts would improve dramatically, and that the doctors would have wisdom.

Trusting in Him...

A Very Long Day

Jack went in last Tuesday and his platelet count was still not high enough to start the next round of chemo. It was so low, in fact, that he got a platelet transfusion and was scheduled to come back to the clinic on Thursday to check his counts again. If his platelets weren’t high enough on Thursday, he would need an Intravenous Immunoglobulin (IVIG) infusion.

Thursday was a very long day. We left for the hospital at 7:30 Thursday morning really hoping Jack’s platelets would be climbing. Unfortunately, even with the transfusion, his platelets were still very low and he was admitted to receive the six hour IVIG treatment. Six hours turned into a lot more, and we ended up not getting home until 11:30pm.

I just have to mention, after being at the hospital for more than 15 hours, we did not see one nurse playing cards. Instead, Jack was cared for by more than eleven nurses who were kind, knowledgeable, skilled, compassionate, patient and hard working. At least three nurses who were on their way home after long shifts stopped by to see Jack because they had heard we were there and were concerned about him. This cancer road is hard but we are so very thankful for the many wonderful nurses and doctors we have met along the way.

Jack will go back tomorrow, Tuesday, to see if his counts are high enough to start the next phase of chemo. We would so appreciate your prayers that they would be.

Hard Week; Good News

It was a hard week. We knew it would be because it was six years ago on Friday that Pete’s dad died of colon cancer. We miss him in so many ways and this week is always full of memories of our last weeks with him.

In addition to that, on Tuesday, we were really hoping Jack would be able to start his next phase of chemo after a month of being on hold due to low counts. But his counts were still falling. The doctor was concerned that Jack might have relapsed, so he had a bone marrow aspiration Tuesday morning.

Jack is so brave. Unlike a younger child, Jack knows exactly what is going on and what a relapse would mean: radiation, a bone marrow transplant and no college next year, at the least. He pushes forward with courage at each setback, however. (I on the other hand, barely held it together and went home and ate almost a pint of Ben & Jerry’s by the individual spoonful while standing in front of the freezer.) 

The bone marrow is sent to Ann Arbor for testing and unfortunately, we had to wait for 24 hours to get results. On Wednesday afternoon, we learned that half of the test was negative for leukemic cells. Great news but because of a miscommunication at the lab, we had to wait another 24 hours to receive the rest of the test results. Needless to say, that was tough. We are overwhelmingly thankful, though that those test results came back negative, as well, and Jack is still in remission. He will go back next week to see if his counts are finally high enough to start the next phase of chemo. As our friend Charlie and his family say, "Onward!"

Looking Back and Looking Forward

This time last year, the days were flying by, full of varsity baseball games, prom, big decisions and big plans for college and graduation. So these days feel a little strange. Like we’ve been stuck in some kind of alternate universe the last year full of hospital visits and chemo and hard days. But spring is coming and better than that Jesus is coming, and our hope continues to be in Him. Psalm 121:1-2 reminds us, “I lift up my eyes to the hills. From where does my help come? My help comes from the Lord, who made heaven and earth.”

We haven’t posted much lately because not a lot has been happening. The last three Tuesdays, Jack was scheduled to begin a new phase of his treatment. Each week though, his levels weren’t where they needed to be, so he hasn’t had any treatment now for a month. The good news is that, other than being stuck at home because of low immunity, he has felt relatively good. The bad news, of course, is that he needs to move forward with treatment.

So our prayer request for Tuesday is pretty straightforward: please pray that Jack’s levels would be high enough and that he would be able to start the next phase of his treatment this week. Thank you for your love, your support, and especially your prayers.

A Shout-out from Florida

The Cardinals played their first spring training game today, so you knew we would be watching. What you didn't know was that Cardinals broadcasters Rick Horton and Dan McLaughlin would have a certain Cardinals fan on their minds...  

Prayers and Thanks

This week, Jack hit the requisite levels, so he is getting the treatments that he was originally scheduled to get last week (Tuesday, Wednesday, Thursday & Friday). The first day is the hardest, and Jack was at the hospital getting a spinal tap and chemo yesterday pretty much all day (from 8am until a little after 4pm), and went home feeling pretty rotten. He's back at it today, and we'd sure appreciate prayers in line with those we requested last week--especially that the side effects would not be so severe. We'd also like to add this one: 

• That this current round of chemo would not cause any  damage to his bladder or kidneys.

On a more positive note, when Erin and Jack got to the hospital for treatments this morning, they were excited to see the brand new book cart that was paid for with money from Jack Up Cancer Night. Patients at Hurley Children's Hospital are able to get a book to read while they're undergoing treatments and take it home with them. And Hurley Child Life Services even recognized Jack and the Grand Blanc Community on the cart. We're so thankful once again to all who made and/or purchased baked goods to help make this possible!

Radiothon Thursday and Friday

Well, Jack's counts weren't quite where they needed to be this morning, so his treatments this week have been postponed until next Tuesday through Friday. Not sure if that's good or not, but Jack is happy to have another week with no chemo!
 
There still is news for this week though. This Thursday and Friday (February 7th and 8th), local radio stations Nash FM 95.1 and CK 105.5 will be holding a dual radiothon from 6am to 6pm to benefit some important causes that have been a blessing to us and are very dear to our heart: Pediatric Services, the Pediatric Oncology Clinic and the Child Life Program at Hurley Children's Hospital.

If you get to listen, you’ll no doubt hear from a number of the friends that we’ve met over the last eight months, and at least a portion of the time between 11am and noon eastern time Thursday specifically on Nash FM 95.1 will be spent focusing on Jack, his battle with leukemia, and the great care that Hurley has provided.

To listen to the radiothon online, go to the stations’ websites (Nash FM 95.1 or CK 105.5) and click on the “LISTEN LIVE” button at the top.

 

Update

It’s been awhile since we have given any updates, so before we share any prayer requests, here’s a quick review of what’s been happening the last few weeks:

At the very start of the “Delayed Intensification” phase in mid-January, Jack dealt with a great deal of nausea, pain and stomach issues. Thankfully, after a really difficult week, things settled down a little bit. Chemo was still having an impact on him, but it seemed a bit more manageable.

Jack's treatment includes a number of different forms of chemotherapy that are given to him at varying intervals, and Jack takes a number of different medications that fight side effects. As a result, it’s a little difficult to determine a pattern of what exactly causes problems and what exactly solves them. That said (to nobody’s astonishment), the more treatments he receives, the worse he generally feels.

In light of that, it was no surprise that last week was a fairly good week as he had a scheduled reprieve from chemo. This week though, things are likely to get tougher as he is scheduled to go in for chemo on Tuesday, Wednesday, Thursday and Friday. The four consecutive days are likely to leave him feeling pretty rotten, so our prayers for him would be as follows:

• That Jack would not have any headaches resulting from the spinal tap scheduled for Tuesday
• That the actual administration of the chemo would go smoothly
• That the side effects from chemo would be minimized
• That he would have strength and endurance to persevere through whatever side effects there are
• As always, that the course of treatment would continue to have its desired effect

As I’ve often put it in talking to people, with over two and a half years of chemo remaining, we know that the path that lies ahead of Jack is a long, bumpy one. We take some measure of comfort though that so far, he has made the progress that was intended, he’s where he’s supposed to be right now on that road and he’s headed in the right direction. Thank you for praying for him as he makes that journey.

***TUESDAY MORNING UPDATE: Click here