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Logan – Update & My Bargain with God

Update

Logan’s blood counts have dropped to zero. The chemo from round 3 has done its job, and he is receiving blood transfusions and platelets as needed. If you are a blood or platelet donor and wonder where your donations go, wonder no more. (Shameless pitch to donate if you are able…) Now, we wait as his body recovers.

Logan tolerated the chemo, and my FaceTime with him and Amanda yesterday afternoon was joyful. He was in such a good mood. The chemo treatment protocol is now in the second half with rounds 4 and 5 ahead. The doctors commented how great/surprising it is that Logan has not had an infection. I credit Amanda’s and AJ’s diligence to keep him safe and “clean.” Please pray for Logan’s strong little body to recover once again, and for his parents as they continue the journey with him.

My Prayer

This post sat in “draft” for a long time – months now. I have not posted it because I was embarrassed and ashamed of it. Well, now, during Advent I am posting it – mostly because it is the truth. Writing this blog is cathartic for me, its primary purpose. But I also hope that others can understand the journey from my perspective, a grandfather’s perspective.

Here goes: During Logan’s round 1 chemo, every night as I was falling asleep the same prayer went through my head. It was simple. I asked God to cure Logan’s cancer and give it to me. This was my prayer as Logan was beginning treatment, when so much was uncertain. Before remission.

I do not wish to die or be a martyr – on the contrary I have told anyone who might listen that I am “aiming for 90.” And yet, my life has been – is – wonderful. I have everything that I ever dreamed of. Wonderful and loving wife Donna and children, great friends, rewarding job – ya know – everything.

Catholic Guilt

But…Logan. Logan has not had the chance to build a life in whatever way God leads him and Logan might choose. And he deserves to have the chance. Hence, the prayer. I am no doubt praying wrong, trying to bargain with God. I feel I need to go to the Catholic sacrament of reconciliation and confess my sin to the priest and ask for forgiveness. In fact, yes, I intend to have that conversation with a priest in the confessional.

And so now, with Logan in remission and recovering from chemo round 3, my bedtime prayer has been, “Lord, we had a deal, and I am ready when you are.” Wow. Really? Again, who am I to tell God what to do? And now to presume that Logan’s remission had anything to do with my prayer? The arrogance of that is beyond measure. Shame is what comes with that arrogance, I can tell you that.

Prayers of Others

But here’s the thing. I wasn’t the only one with that same prayer, bargaining with God. An elderly friend and cancer survivor had a relapse and was scheduled for surgery during Logan’s first round of chemo. That friend said they were asking God to take them and spare Logan. This is absolutely incredible to me. What an unbelievable prayer for someone who had not met Logan or his parents Amanda and AJ. When I have previously written of the love that has come our way in support of Logan’s battle, this is an example. So much love that me writing this sentence has my eyes well up in gratitude. That friend passed away from surgical complications. I will think of them and pray for them always.

It never occured to me that I would be in a position to think of such a prayer and actually pray it. How many others are in my position? How many others would gladly trade their lives for a grandchild’s or other loved one’s? Based on the amount of love shown my family during this experience, many. Based on what others have shared with me about their prayers during difficult times, many.

The love that has come to my family has come in many ways, and so much through prayer. From all of you. I believe that your prayers are being answered. For skill of the medical teams, for strength of family, for Logan’s tolerance of treatment, for a minimization of long-term side effects from the treatment. Thank you for your prayer. It matters.

Pope Francis’ Tweet

So I follow Pope Francis on Twitter. (Oddest sentence I have written so far.) His tweet from this weekend caused me to finally publish this post:

“God never tires of waiting for us. When we turn away, He comes to look for us; when we fall, He picks us up; when we return to him after losing our way, He waits for us with open arms. His love is always and gives us the courage to start anew.”

For me, in Advent, as we prepare to welcome the Savior of the World, I know that God does what He does in His own way and time. I trust. And I am ready, whenever. I have always been ready.

Logan- Latest Test Results, Hospital Life

Logan napping on Mimi during his 3rd chemo round

Latest Test Results – Remission!

After every round of chemo, Logan is tested to measure his level of cancer cells, if any. Logan had both a lumbar puncture for a spinal fluid test and a bone marrow aspiration to test the marrow. Results are just in after round 2 was completed, and Logan remains in remission with no sign of cancer! This is, again, as good as can be hoped for and is an answer to our/your prayers. Thank you all for your thoughts and prayers on behalf of Logan and Amanda and AJ. Each step is another to his return to the non-medical world of being a kid, and we are thrilled.

Still, though, there are five total rounds of chemotherapy that he must endure. Logan just finished – at 3am Monday – his last dose of chemo from the third round. The rest of December will be needed in the hospital for his body to recover from that treatment. Logan’s sense of taste has been affected by this round of chemo, so food has not been all that appetizing to him. This is such a change from just before he went back into the hospital – Logan was an eating machine. Now, blueberries are one of the few foods that Logan will eat. Even mini-nilla wafers get a head shake “no” from Logan. This is shocking given how many nilla wafers he ate over the Thanksgiving weekend. But taste will return, hopefully sooner rather than later.

Diaper Changes

The chemo drugs are nasty. So nasty that while Logan is on chemo, diaper changes require special precautions for the caregivers and Logan. Gloves are used for those changes, and Logan’s bottom and groin area are washed so that any residual chemicals that were expelled do not harm his skin. Then butt paste is used after every change, to coat the skin and provide some protection. Good news is that over the next several days the chemo drugs will work their way out of Logan’s body. And of course, Logan’s diapers are weighed so that the staff can measure his “in’s and out’s.” I’m still getting used to someone wanting to weigh a used diaper…

Therapy

I mentioned this early on, but it bears repeating. Speech, play, and occupational therapy visits happen almost daily with Logan and other babies. Development of the young ones is certainly impacted by the treatments and extended hospital stays. Donna and I were present when speech therapy visited on Saturday, and the assessment and ideas that the speech pathologist had were amazing. Logan has lost a few of the words that he previously spoke, and now all of us caring for him are armed to properly encourage his speech and word development. Logan has the fundamentals – just needs a bit more practice.

Visiting

Amanda and AJ have spent countless hours at the hospital. And extended family who have been quarantined have provided breaks to them. This means that Logan has always had at least one family member – mostly two – with him 24/7 while he has been in the hospital. Simply wonderful. We are all grateful that personal and work circumstances allow this, because this is not the case for some young patients.

One nurse shared with us that some babies are alone for as many as 20 hours per day. The staff does their best to be with them, but the nurses have multiple patients to care for. All sorts of circumstances get in the way of such family visiting for some patients. Think of work demands, siblings who require care, distance from extended family. So we know that we are blessed to be able to spend the time with Logan. Please pray for those babies and families who are struggling with hospital care.

Your kind words, thoughts and prayers are so uplifting and appreciated. Thank you.

Logan – Round 3, Birthday, Mom & Dad

AJ, Logan and Amanda at our Arboretum outing

Back at the hospital for Chemo Round 3

Yesterday morning Amanda and AJ took Logan back into the hospital for his third round of chemo. Round 3 has Logan receiving his chemo twice a day (3am and 3pm) for 5 days. This compares to the 10 days and 8 days for the previous rounds. But – and this is significant – the chemo is about 10 times the strength of what Logan has previously endured. Logan’s little body is being absolutely hammered with poison that will save his life. We have no idea how he will react to this, and I ask for your prayers.

Before Logan received the first chemo dose at 3p yesterday, he was put under anesthesia for a bone marrow biopsy. Results from the biopsy are expected over the next several days, and what we want to hear is that Logan remains in remission. His feeding tube was also reinserted. Despite Logan’s champion eating, he did lose a bit of weight during the hospital holiday. So the feeding tube will provide the calories that he needs. Logan’s visit with us without a feeding tube allowed him the freedom to roam wherever he chose, which was wonderful to see. We also got to be on the front lines as he developed his walking skills. The record during the visit was an unaided 10 steps.

Happy 1st Birthday!

Today is Logan’s first birthday, and he will spend it at the hospital receiving chemotherapy. Writing that sentence welled up my eyes with tears. It is just so unfair that Logan and his fellow pediatric cancer patients are in such battles. And yet when I look at Logan, he has that wry smile, that little smirk that just melts my heart. No, he does not realize the battle that he is in, but he is enduring it with the help of the medical staff and his family.

Logan’s birthday was celebrated early at our home Monday. The theme was Winnie the Pooh. Pictures posted on social media show that theme in the beautiful and delicious cakes made by Aunt Casey, and the big red balloon and custom shirts by Aunt Bridget, and the Tigger, Piglet, Pooh and Eeyore stuffed animals. Quarantined grandparents Mike and Kim and me and Donna, as well as Aunt Casey and Uncle Chris attended. N95-masked guest appearances by Aunt Bridget and Uncle Jeff were a treat. As with most first birthday parties, Logan was mystified with the happenings. And yet it was great to celebrate.

Mom and Dad

This was the second visit by the little family between chemo sessions. The visits are both joyful and more work than you can imagine. After being a part of those 7 days and nights, I must tell you about the love and care and partnership of my son AJ and my daughter-in-law Amanda. They both care for Logan without question, without complaint, and without hesitation. They ask each other for help as needed, and the requests are completed with joy. Watching them work together to care for their son is a model I wish could be bottled and given to others struggling with such responsibilities. I think of caregivers who accept long-term care needs for family members for various reasons, and all of this is a labor of love. We saw it in Amanda and AJ every day and night.

Nights

During the day in addition to playing with Logan, we all focused on feeding and hydrating him. At night because his sleep has been so disrupted by the hospital care, it was a merry-go-round of parents and grandparents taking turns comforting him. That worked for several nights, until Logan started screaming bloody murder during the night. One night around 1:30a, I tried my best to comfort him, but no dice. Then Amanda came out, and she was able to immediately calm him down. Watching her love my grandson the way she did was magical. She handed him back to me to get some water for Logan and – screaming bloody murder. When Amanda took him back – calm. So that night it was Amanda’s job to rock him to sleep.

The next night Logan was awake and AJ was with him. I came out and asked if I could relieve AJ so he could sleep. AJ hopefully said, “We can try…” And so Logan came into my arms and – screaming bloody murder. Handed back to AJ – calm. We were onto something. As babies develop they apparently go through “leaps,” stages of development that are somewhat predictable. We believe that a leap was happening and impacting Logan’s reactions.

Even the next morning Logan was beside himself with me and Donna – until he fully woke up and realized who we were. Then he was his happy little smiling self. That Donna and I could not give Amanda and AJ a little relief those nights was disappointing. However the last night they were with us, Tuesday night, was different. Both Donna and I were able to take turns in the middle of the night and Logan allowed it. That was good for all of us as Amanda and AJ could sleep, and me and Donna could get one more night’s snuggle with Logan.

Amanda and AJ are just wonderful parents. I pray that they continue to have an unending supply of love and strength and patience to care for Logan as partners. Thank you all for your prayers and support.

Logan – Discharged; Happy Thanksgiving!

Thanksgiving 2021: Big John, AJ, Chris, Logan, Donna, Amanda & Casey

Middle of the night snuggles

The clock read 2:55a when I heard Logan awake this morning. I passed Amanda in the hallway heading toward the nursery and said, “I got him.” Silently and in the dark, I lifted him up, grabbed a blanket and started rocking him. Logan, sweetly, immediately nestled his head into my neck between my head and shoulder. My thought to myself in the moment was, “this is the absolute best feeling.”

Logan reached up his little hand and gently felt my face. My nose, mouth, chin. AJ and I later agreed that he was checking to see if this was Dad or Big John. It took me three tries of getting him to sleep and putting him back in the crib before he stayed asleep. Before Logan was diagnosed, he was able to go back to sleep during the night unaided. The nighttime medical care in the hospital has unfortunately ruined that ability. But he will learn it again. The good news is that last night Logan slept for 10+ hours, including the 60-minute interlude with me. He needed that sleep, as did Amanda and AJ.

Discharge

Logan’s discharge yesterday from round 2 chemo was a great surprise, as we expected it to happen next week. Blood counts were increasing on Monday. On Tuesday, AJ said that Logan’s numbers were increasing fast, and he may be discharged on Wednesday or Thursday. Yesterday morning – Wednesday – AJ asked me to be ready to swing by the hospital with my truck to pick up stuff – they have lots of stuff – to bring to our house. So, great news that Logan’s little body rebounded strongly after the second round of chemo. Otherwise, they may have been stranded in the hospital over the four-day weekend. Of course, the hospital staff wanted to discharge those they could, and that certainly helped their cause.

Logan was discharged without a feeding tube. This is wonderful for his mobility and simplifies his care for his parents and grandparents. That said, we are uber obsessed with making sure he drinks enough fluids and eats enough. For Logan, eating enough is not an issue. Getting him to drink is another matter, even if it is chocolate milk. We will be hovering with water bottles…

Thanksgiving Weekend

Our holiday weekend changed dramatically with their discharge. Donna and I were prepared to cook steaks on the grill for ourselves today. That was so we would remain quarantined in anticipation of Logan’s presumed arrival next week. Instead, we headed with AJ and Amanda to also-quarantined Chris and Casey’s home for Thanksgiving dinner. Chris is Amanda’s brother and Casey is Chris’ wife. We are stuffing – ha, get it? – our weekend with things to do. A time is booked for the Dallas Zoo Lights, a drive-through experience which is socially-distanced as we will stay in the car. We also booked a first-thing-in-the-morning time slot for the Dallas Arboretum. We will stay away from others there, and it if gets too busy, we will leave.

And on Monday we will celebrate Logan’s 1st birthday early, before he goes back into the hospital. Logan’s birthday is Dec 2, Thursday, and it will be remembered because he will spend it in the hospital receiving chemotherapy round 3. By Monday, Amanda’s Mom Kimberly and Dad Mike will have cleared quarantine and be able to join us.

Lots to be thankful for, as you can see. I again thank you for your prayers and support. Your prayers are heard, and continue to work. Happy Thanksgiving!

Logan – Cancer Treatment as “Normal”

What has been running through my mind is that Logan’s cancer treatment quickly became a normal thing in our life. It’s just there. And so the family works though it. Of course, the biggest difference from chemo round 1 and round 2 is that Logan was in remission after round 1. That my friends is prayers answered, and a great deal of uncertainty evaporated. But still, chemo is poison, and it is difficult for Logan’s little body. Here is an update:

Logan

About 10 days have passed since the round 2 chemo was completed. It takes several days for the chemicals to work their way out of Logan’s body. Then, his blood counts plummet to zero. Blood and platelet transfusions are needed to sustain him until his body and marrow recover and start to produce blood cells. That is what we are waiting for: recovery that will allow a break from the hospital before round 3.

The fluid retention that was a real thing during round 1 is much less of a problem this time. Logan’s antifungal meds are being tweaked to avoid the nausea that he experienced. Given that he is pretty active, Logan’s central line into his chest developed a hole and needed replacement. So, surgery. See what I mean about normal? “Oh, he needs general anesthesia to replace his central line.” And it just happens.

You may notice in the pic that Logan’s feeding tube is not in his nose. Yep, he pulled it out again. But maybe a blessing in disguise as Mom and Dad were hoping to not need the feeding tube. Logan had not been fed through it for 4 days and he has been eating normally. Logan was a champion eater prior to diagnoses, and now continues to be a champion eater. In fact, if you are eating something in his presence, he expects to eat it, too. This is a big difference from round 1 when his fluid retention made it difficult for him to swallow.

Mom and Dad

Amanda and AJ are incredibly dedicated to Logan and his care. They are his advocate with the medical teams. And Logan’s almost full-time hospital companion. What is different in round 2 versus round 1 is that Amanda and AJ are taking needed breaks from the hospital. During round 1 they could not bring themselves to leave him, and so for 40+ days they were at the hospital, together in the small room, doing their best to comfort Logan. Toward the end of round 1, they did takes some breaks with Amanda’s parents Kimberly and Mike, Amanda’s brother Chris and wife Casey, and me and Donna taking their place at different times. For round 2 this is happening more often, such as my visit shown in the picture above on Thursday evening. Chris and Casey have done overnight shifts which are incredibly generous of them, and allows Amanda and AJ to sleep in a regular bed at least for a night.

Family and Friends

To say that family and friends have been generous and kind and supportive is a huge understatement. When AJ’s sister Bridget launched the “Logan and Muggles Against Cancer” t-shirt fundraiser, it was more about doing something – anything – to support her brother and family. Well, that little fundraiser with modest goals ended up raising more than $15,000 for Amanda and AJ. $15,000!! These funds will be used to offset the medical expenses that are now arriving, and supplement the family’s health insurance. So, once again, thank you so much. If you bought a shirt, please take a pic and post it on social media and tag Amanda and AJ.

While Logan’s cancer treatment now seems like it is normal, it certainly is not. The resilience that I see from Logan and his Mom and Dad is a testament to their personal strength and the prayers and support from all who surround them. The journey will continue as round 2 concludes and moves through rounds 3, 4 and 5. Thank you for the support and prayers – they are real and tangible.

Logan – Chemo Round 2

A Halloween visit: Logan, Alexis, Uncle Jeff, Amanda & AJ

My grandson Logan has returned to Children’s Hospital in Dallas for his second round of chemotherapy. Today was his first full day back at the hospital after being admitted yesterday afternoon. Logan’s appointment yesterday morning included checking his blood to make sure that it had recovered enough to start the second round. It had as expected. The long journey continues, with multiple rounds of chemotherapy and multiple months. Yes, Logan’s remission after Round 1 is the best news possible. And now the chemo treatments go on as the medical protocol demands

Respite from the hospital

Logan’s, Amanda’s and AJ’s 5-day visit with me and Donna between chemo rounds 1 & 2 was both wonderful and exhausting for all. It was so good to see them and to do what we could to help. Logan was a joy with his exuberant giggling and free rein of the house.

And Logan’s care was a challenge with his feeding tube. You see, he’s just a baby. Logan neither understands nor really knows that he has a tube threaded through his nose and into his stomach. So inadvertently he can catch the tube while rubbing his nose or face and pull it out. He did it at the hospital, and managed to partially do so while visiting us. (Amanda and Donna pushed the tube back where it belonged.) That tactic of letting babies cry themselves to sleep? Nope, does not work for Logan. Any time he cried at night or waking up from a nap, an adult needed to be there to avoid a tube-pulling episode. Let’s just say sleep was disrupted. But sleep was disrupted no more than what Amanda and AJ experienced by themselves all those days at the hospital. They are awesome.

Visitors

Family visits were welcomed while Logan and Amanda and AJ were with me and Donna. Amanda’s parents Kimberly and Mike, and Amanda’s brother Chris and wife Casey visited inside our home. They have been able to quarantine and were helping at the hospital towards the end of the first round of chemo. Other family members such as our son Jeff and his girlfriend Alexis in the picture above sat and chatted through the front storm door. Our daughter Aunt Bridget did the same, as did Donna’s sister Becky. And Uncle Kevin in Florida was a regular FaceTime call. Everyone was happy to reconnect in whatever safe way was available.

The rhythm of daily chemo returns. I rocked Logan throughout his visit. Each time I thought of the challenge he is facing at such a young age, and his strength, and his joy. His little body is being poisoned again to save him. Your continued prayers are needed and requested.

Logan, The BEST news

Yesterday: AJ, Logan and Amanda as Han Solo, Wicket, and Leia

Logan is in remission! This is the BEST news possible, the absolute best case scenario after the first round of chemo. So, first, thank you, each of you, for the prayers and support that has cascaded onto the family. The most heartwarming aspect of this horrible diagnosis is the huge amount of love we are experiencing. And big thanks to the medical teams for their skill, care and attention. That research teams – with the important help of medical trial patients over the years – figured out over the years how to treat this disease is amazing to me. My family is reaping the benefit from the sacrifice of others, and that is not lost on me.

So while it seems like I am scheduling the parade, treatment is far from over. Yes, the bone marrow and spinal fluid and blood are cancer-free which is so, so great. But the hard-learned treatment protocol is to make sure no rouge cancer cell is hiding somewhere in Logan’s little body, only to divide and grow and emerge later. That means 4 more rounds of chemotherapy over the next several months, with all the side effects that come with it. But I gotta say, the fear of the unknown is much less, optimism abounds, and tears of joy are being shed. Thank you God.

Logan, a break from the hospital

Mimi, Logan and Amanda – Tuesdays’ evening meds

Logan and Amanda and AJ are at our home for a few days respite from the hospital between chemo rounds. We are thrilled. A whirlwind of activity ensued yesterday evening when I got the call that they were being discharged. I drove down to help extricate them from the hospital room, and it reminded me of picking up kids from college at the end of a term. So much stuff. The current plan is readmission on Monday for round 2 of chemo. But of course that could change as biopsy results come through. The picture above is Amanda giving Logan evening meds through his feeding tube.

Logan had both a bone marrow and a spinal biopsy on Monday and he came through those procedures wonderfully. Final biopsy results are pending to see how the chemo performed, and to make any chemo drug adjustments for the next round. One of the biopsies is sent to Seattle for analysis which causes some delay.

Donna was tasked with administering one of Logan’s meds this morning at 4am. I woke up about 5am and took over rocking him . Around 5:30a both Amanda and Donna woke up and we all had the same thought that Tylenol was needed for his teething. Amanda and Donna went back to sleep, and AJ woke up soon after and started Logan’s morning feed. I learned that AJ was up a couple of times last night as Logan’s oxygen alarmed – but that was worked through. I know that Amanda and AJ got more sleep than they did in the hospital, so that is good. And me and Donna got to rock with Logan. And Logan is free to explore the house, much different that the restrictive 4×6 foot sterilized play area in the hospital. All wins.

Logan, Halfway thru Round 1

Logan & Amanda today, halfway through chemo round 1

So far so good. In this long journey of multiple chemotherapy rounds, Logan is on day 6 of 10 in round 1. The number of drugs is decreased, and the daily rhythm of twice-daily infusions continues through Sunday. Then Logan’s immune system will be non-existent. About seventeen days later, we hope that his immune system will have recovered to the point that they all can leave the hospital for a few days. Then, round 2 begins.

As you can see from the photo of Logan and Amanda, Logan looks great. The whale bandana Logan is wearing is dual purpose. To catch drool as Logan is cutting teeth, and as an additional barrier to Logan trying to mess around with the central line in his chest. He is eating normally and is his normal happy little self, for which we are all very grateful. The chemo drugs are not having significant side effects. When I asked AJ about that he said that kids seem to do pretty well with the treatment. Thank you, Jesus!

Our lifeline continues to be FaceTime. The objective is always to get Logan to smile at Big John and Mimi, and he never disappoints.

Logan, Chemo

Kevin and me dropping off coffee this morning to AJ at Children’s

Logan’s chemo treatments started Thursday evening and will last through Oct 3. At that point his immune system will be nonexistent. Then a couple more weeks will be spent in isolation at the hospital to allow his white blood cells to regenerate. After maybe two or three days at home, the cycle will repeat itself several times more. A long road, this is.

Yet when you see Logan on FaceTime, he looks great. One doctor who visited remarked, “You would never know that Logan is sick.” So I pray that Logan continues to tolerate the treatments.

Necessary care means that throughout the night, nurses visit to monitor Logan’s vitals and to make sure his diaper is changed. Apparently the chemo drugs are excreted through urine and bowel movements. And so it is important to keep the diapers as clean as possible. The hard-fought ‘sleeping through the night’ is a thing of the past. Logan’s care wakes up all three of them throughout the night, and AJ remarked this morning that the night cadence is similar to when Logan was newborn. So Amanda and AJ are tired. I pray for Amanda’s and AJ’s well-being as they accompany Logan in this fight, as it is just beginning.

A visit to the hospital looks like the pic above. Hugs are ‘no bueno’ with the start of chemo. We social distance, and we wear masks. There is a 5- or 10-minute conversation along with the drop off of coffee. Maybe we pick up dirty laundry or return clean clothing. Whatever it takes, we are there. Thank you all so much for your continued prayers and good wishes.