Logan, White Blood Cells

Logan with Big John on FaceTime

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, Mimi & Big John at the Hospital

Logan, Donna and John hanging out at Children’s Hospital

Donna and I were so happy to visit the hospital today and play with Logan. He is doing great as you can see from the picture. He was laughing and giggling and was just a joy to be around. Donna wore him out this morning and he crashed, and I wore him out in the afternoon and he crashed. It’s 8pm as I write this, and Donna and I are about to crash. It’s hard work playing with a 10-month-old, at least for 60-somethings.

We have been preparing for a visit from Logan and Amanda and AJ between chemo rounds once Logan’s blood work improves as it needs to. And it is on its way there. But given that prep, we are now in a position to relieve the dedicated and loving parents at the hospital. Today was our first chance.

We have been quarantined since Oct 6. Seasonal flu shots, check. COVID boosters, check. Even though we do not meet the 65 minimum age for the current booster effort, we do have these extenuating circumstances that drove the booster. For me who was in the Pfizer booster study, that meant being “unblinded” and told that I really only received the placebo a couple months ago. Pfizer unblinded all participants in the study who requested it – in the nick of time for me and my needs. I received my booster last week.

Of course, quarantine is familiar to us all from our pandemic experience. But it’s a bit different this time around because we are quarantined and most others are not. Typical visits with friends and family including our precious grandson Griffin have stopped. We miss seeing everyone.

Difficult. Worth it.

Logan, Muggles & Crying

Logan’s shirt designed by Aunt Bridget

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, Rosaries

Rosaries from Grandma Mary for Jeff, Bridget & Connor, and Amanda & AJ

My 90-year-old Mom has sent each of her grandchildren a rosary and asked that they pray the rosary to our Blessed Mother in honor of Logan, for Logan. You see, she has amassed many rosaries over her lifetime, and the plan was to give a rosary to each grandchild when she passed. But given Logan’s illness, the plan changed. With the help of my sister Terry, each grandchild has received or will soon receive a rosary, a note from their Grandmother, and a booklet on how to say the Rosary. The rosaries in the picture arrived at my home to deliver to those in Dallas. I opened the box and I was so touched that I cried. Once again, I am tearing up writing these words because it means so much to me.

October happens to be the month of the Holy Rosary, and for my non-Catholic readers the Rosary is often used to ask God for a special favor. The Rosary is a simple prayer, a perfect prayer, and a humble prayer – just like the Blessed Mother. How many Rosary prayers will be said for Logan? No idea, but I hope many. I have been and will continue to pray to the Blessed Mother for Logan’s recovery. It is the last thing I do every night as I close my eyes.

Friends and family members – you reading this – are genuinely touched by 10-month-old Logan’s leukemia fight. You are generous with your prayers. Grandma Mary has a “God box” – literally a box – into which she puts names for prayer. She is praying for Logan, I know. And I hear from so many people who are fervently praying for Logan, his family, and his caregivers. Know that this prayer is needed and appreciated. Thank you.

Logan & Griffin; Really, Lord?

Bridget & Griffin in the ER last night

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?

Griffin & Joy & Anguish

Mimi (Donna) and Woody (Griffin) at the Arboretum

I continue to struggle with the juxtaposition of anguish and joy. These emotions are at different extremes and I am experiencing them seemingly on top of each other. How does one balance these?

I experienced joy with Donna and Griffin after once again inserting myself into their Wednesday this week. Since it was a glorious Fall day, we visited the Dallas Arboretum. Griffin was in his cute little Woody costume, fighting against wearing the cowboy hat the entire visit, and picking up little pumpkins along the way. Then we found the Children’s area with water features and fountains. And since we are grandparents, off came his shoes and he proceeded to become completely soaked, playing in the dancing water streams with the other kids. That is joy, for both Griffin and me and Donna.

After dropping off Griffin, we came home and I started longing for our FaceTime call from Amanda and AJ and Logan. We just must see them and talk to them daily. We want to know how their day was, how they are doing – good or bad. And sometimes – maybe more often than not right now – the day has been difficult. Watching my family struggle with such challenging circumstances and difficult decisions fills me with anguish. But that anguish does not cause me to look away. I want to be with them, and I want to hear. And you know what? When Logan smiles at us, the joy busts through the screen.

Joy and anguish are coming at me – us – right now, at their speed and not ours. I say ‘bring it on’ – as if I have some control over them. Please Lord, allow me to both appreciate the joy and lean into the anguish.

Logan, Feeding Tube

Logan, sleeping with his feeding tube

My grandson Logan received a feeding tube yesterday. He was not eating, and so Amanda and AJ agreed to it as a necessary part of the treatment. It’s just another thing that we were not aware could become needed. He is just a baby, and the idea of a feeding tube just does not make sense to him. And so, this morning at 3am, Logan pulled it out.

Truth is, we don’t know anything about this whole ‘leukemia treatment’ journey. Haven’t travelled it before. So my expectation that things would improve after round 1 chemo was complete on Sunday was flat out wrong. After chemo stopped, he would get worse. Logan will feel bad for the next several days before he might start feeling better. This all just sucks, and I realize that these posts are a difficult read. They are difficult to write, too; thank you for sharing the journey with my family.

The effects of the chemo poisoning of his 10-month-old body are continuing, severe, and heart-wrenching. He started retaining fluids, so Lasix was prescribed. Logan had trouble eating because of throat sores, so morphine was prescribed. He is lethargic. I was so happy to see him playing yesterday evening via FaceTime. That only lasted about 10 minutes before he got tired and fell asleep in AJ’s arms as I watched his eyes flutter closed. Please continue to pray for him.

Hospital therapy is offered to help Logan in his development while there. Actually providing the services is difficult because, well, he is asleep a lot. Music therapy did successfully visit yesterday and he loved it. Speech and physical therapy are trying to make it happen. I had not even considered the need for such therapy, it certainly makes sense, and I am grateful for it. Grateful for the hospital staff working to balance treating the disease and continuing Logan’s development.

Logan, Mom and Dad

Amanda and Logan FaceTime with Big John

Yesterday – Saturday morning – I drove to the hospital with a Starbucks drop-off and laundry pick-up. This is my time with AJ to check in with him and see how things are going. What I felt from AJ was the enormous stress with which he and Amanda are burdened. Their child is fighting a life-threatening disease. Medical treatment is taking its toll on both Logan and the family. The sleep deprivation is real and stressful. Confinement in the hospital room 24/7 is prison-like. Certainly Amanda and AJ are lucky to be with Logan and limit the “in’s and out’s” from the hospital to minimize Logan’s possible infections. But with any choice, consequences exist. For them it is finding a gargantuan amount of patience and understanding and living it every day. They are SO good with Logan. Your continued prayers are needed to give them strength. The weight of their burden had me crying the entire drive home.

Logan is bruising due to his lack of body mechanisms to repair little injuries. The blood system in a healthy body easily handles this, but the chemo has destroyed that ability. He received a unit of blood on Friday, and platelets on Saturday. His face is puffy. If you, like me, a platelet donor over the years who wondered where the platelets go, wonder no more. Patients like Logan receive them. And now on Sunday – today – Logan’s last round 1 chemo treatment is complete. His body needs to recover in the hospital from this poisoning for a couple of weeks, then round 2. Now, we wait.

Griffin at the State Fair

Griffin and Mimi feeding the camel

Wednesdays are Donna’s – Mimi’s – day with Griffin. Yesterday marked two weeks in row in which I inserted myself into Mimi and Griffin’s time together. Last week it was the Zoo, and this week the Texas State Fair. We had a great time, the highlight of which was the petting zoo where you can feed the goats, emu’s, llama’s – you get the idea. And the camel. The camel was the best. With Griffin only 18 months old, we arrived at the fair when it opened at 10am, and were out the gates at Noon when he got tired. Super fun. And then I was able to work that afternoon from home.

Why is it that taking time from work like that has rarely occurred to me? I work for a great company and a great boss and so the flexibility exists to do what you need to do for your family. For sure I go to doctor and dentist and such. But the State Fair? Not an option. Maybe I consider these as things I want to do with my family rather than need to do. And now only few short weeks into Logan’s battle with cancer my viewpoint has changed, at least a little. I still feel the drive to do right by my company, to earn my keep. And now I also I feel a huge drive to feed the animals with my grandsons.

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.