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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 – The Pool

Round 2 Chemo Complete

Logan completes his 8 days of round 2 chemo today. He feels good, and continues to smile and giggle during FaceTime calls. With the chemo complete, the process of white blood cell death and eventual recovery continues. Amanda, AJ and Logan will remain in the hospital until his white blood cells recover. Then they take a break from the hospital and visit me and Donna for a few days. We cannot wait.

Logan has been quite ill from the chemo drugs. Keeping down his feedings without vomiting is a challenge. In fact when we FaceTimed last night, Logan did not have a feeding tube – he had vomited it up. And while he had those brief moments of freedom from the feeding tube last night, a new tube was to be inserted. This is not a fun process for the little one, and his shrieking during the re-insertion is heart-breaking.

Visiting

We have not been at the hospital and able to “spell” AJ or Amanda as we broke quarantine to be with our grandson Griffin. Balancing the need to stay quarantined for Logan with the desire to see Griffin is the most difficult balancing act for Donna and me. We took Griffin to the zoo last week, and saw him Saturday. And now we began our quarantine again in anticipation of helping them at the hospital or for their visit here. Thank goodness for Amanda’s family staying quarantined. They have been able to go to the hospital and give AJ and/or Amanda a break. While Logan is sleeping pretty well, Amanda and AJ are not, so the breaks are welcomed.

The Pool

What’s with the “Pool” in the title? During a recent FaceTime call I noticed what I thought was a large barrier wall that Logan was standing next to. Asking AJ about it, he explained that a social worker had recommended an inflatable pool to keep Logan contained in a clean and safe environment. An enterprising Mom of a baby with cancer came up with the idea, which is head-slappingly obvious when you hear it. Of course my first question was, “Why didn’t you know about this when you were in the hospital for round 1 chemo?” Something new every day…

Thank you all for your continued thoughts and prayers as Logan’s body begins its recovery and healing again.

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, White Blood Cells

This portion of chemotherapy’s rhythm is waiting, waiting for the white blood cells to appear again. The bone marrow needs to recover and “re-start” (technical term…) after being killed by the chemotherapy. Ultimately, the bone marrow is the genesis of blood cells. The treatment of leukemia includes multiple rounds of killing the bone marrow and recovering which is why this is months-long process. Logan receives blood transfusions and platelets as needed, since his marrow is not functioning yet. Or should I say ‘had received platelets,’ since he did not need those yesterday – a good sign. Public Service Announcement: donate blood and platelets if you are able!

Logan is doing well. His little body has processed the excess fluids that he was retaining after some med changes, and now he looks again like the toddler he should. He is standing by himself and is on the verge of walking. Logan lost a couple of pounds of those retained fluids, so you can imagine that he is feeling better. That does not mean that his nighttime sleep is back to what it was. Before this diagnoses, Amanda and AJ had just gotten Logan to sleep through the night. Now with the comings and goings of a hospital room, he is up many times each night. Which means Mom and Dad are also up. Which means everyone is tired. But feeling better and happy. I’ll take it.

Logan, Muggles & Crying

Family and friends are daily asking what they can do to help Logan and parents Amanda and AJ. Prayer, always, is appreciated. More tangible efforts are admittedly few. Some have provided food for them at the hospital or DoorDash gifts so Amanda and AJ can order as they wish – and we hope to organize food to a greater extent for future hospital stays. Of course, please donate blood and blood products – and register as a bone marrow donor – if you are able.

Muggles Against Cancer

And now there is “Muggles Against Cancer.” My daughter Bridget is a crafter and designed the above shirt for sale as a fundraiser. Logan’s family loves fantasy books and movies, so the theme is perfect. And there are myriad expenses that Amanda and AJ are seeing as a result Logan’s illness. When talking to Bridget last Friday evening as she was finalizing the shirt and post, she mentioned, “Well, maybe a thousand bucks can be raised for them. Wouldn’t that be great?” And I agreed.

Fast forward to Monday, today, a few short days later. 120 shirts have been sold and over $5,000 has been raised through both shirt sales and straight donations. Unbelievable. Thank you so much! These sorts of things are hard to predict, and it was just hoped to get enough ordered shirts to meet the production minimum. To get the campaign to this level was not expected. And it’s about more than money. It’s also about community, and support. So when the t-shirts are produced and delivered, we would love to see pictures posted on social media with you and yours modeling the shirts – and tag Amanda and AJ so they can feel the love. Know that Logan is doing well, smiling, and waiting for his blood counts to recover from the chemo.

Crying

So, John, what’s with all the crying? I know that I have mentioned how various aspects of Logan’s journey has caused me to cry. I can tell you that my recent tears are tears of joy as I see what others do for my family. On Saturday morning, I looked at this fundraiser and saw that more than $1,000 had been generated in about 12 hours. And I read some of the comments, and it caused me to cry. Why? Because of everyone’s generosity, their kind words, and their prayers and offers of help. It is just overwhelming to me how wonderful everyone is, and it causes me to consider whether I have supported others in years past to the extent that y’all are supporting my family now. I hope so, but know that I can and will do better.

If you wish, donations or shirt purchases are through Custom Ink. The campaign closes November 7.

Logan & Griffin; Really, Lord?

Both of my grandsons spent last night in the hospital.

If you are reading this blog, you know that Logan has been at Children’s for several weeks. Well, Griffin had an urgent ER visit last night after an allergic reaction to a cashew. When you receive a FaceTime call from your daughter that begins with “Don’t worry, Griff’s OK,” you know something is wrong. And then you notice the unmistakable look of an ER room. Thanks to Bridget and Connor’s quick and likely traffic-law-breaking drive to the hospital – and the use of the EPI pen – Griff is OK. Traumatic for all.

We knew that Griff was allergic to peanuts, but unaware of other nut allergies. So… now nuts of all kinds are off the menu. I asked Donna, “Do we have an EPI pen for Griff when he is with us?” Nurse Donna replied, “Yes, in the grey bag that is always with him.” Good to know. Thank you to this new group of medical caregivers for their work with Griffin.

Logan with “so big,” led by Mimi (upper right picture insert)

A rare double-picture blog post, Logan is doing OK. The most recent challenge has been nutrition with the feeding tube getting inadvertently getting yanked out via random grabs by Logan. Reinsertion is traumatic for all, and so last night socks were double-taped onto Logan’s hands to reduce the possibility of removal. The smiling picture of Logan hides the challenges of the last several days, but let’s take it, right? We are praying that Logan’s body heals itself as expected and white blood cells grow.

What is tough to take, Lord, is that my grandsons were in the hospital overnight at the same time. One is too many, two is intolerable. While my emotions are kinda under control, I still have moments when it all overwhelms me. Please, Lord, a break?