November 2021 -

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.