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 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.
AJ & Logan -Wednesday morning feed
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.
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, 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.
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.
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.
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?
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.
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.
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.
