Griffin Archives -

Logan: “Love you, Big!”

Logan, Big John, and Griffin swimming during 4th of July weekend

Remission Continues

It has been 15 months since Logan’s discharge from the hospital, and he is still in remission. For the first year after discharge, on the first Wednesday of each month, Logan was brought to Children’s Dallas for a blood draw. After 12 months, his blood draw cadence changed to every other month, and blood tests continue for 5 years after discharge. Logan has been in remission since the first round of chemotherapy in October of 2021, and each month of remission is a blessing.

But those blood tests…

That said, the day or two leading to each blood draw creates anxiety in the family. The unspoken concern is “What if the leukemia returns?” I go to bed worried about the test and praying for continued remission. The day of the test I usually receive a FaceTime call from AJ in the hopes of distracting Logan and keeping him occupied during the brief wait for the results. I am at work for those FaceTimes, and I take the call – my co-workers are supportive and patient with this grandpa. Most importantly, the family waits for the text telling us “good results.” And there is a collective exhale of relief, each time.

Growing and Developing

Looking at Logan now, you wouldn’t know the hell that he and his parents endured during his treatment. During that time, I did not think that he looked all that bad. But seeing some of those pictures versus seeing him now, well, he was one sick little boy. Perhaps the changes were so slight over time that we did not see the physical toll. But, no doubt, Logan was absolutely hammered by the chemotherapy.

And demonstrating the resilience of many who experience trauma, Logan is now thriving. Just these past two weeks Logan’s vocabulary and verbal ability have skyrocketed. Speech has ‘clicked’ and he is eager to learn and say words and sentences. Logan will repeat whatever you ask him to say, and he slowly and deliberately does so. It is wonderful, and amazingly cute. But “Love you, Big” is beyond wonderful and cute. Last week A.J. asked Logan to say goodbye to me with those words, he did, and it melted my heart – just as those words did when Griffin said them to me last year. Thinking back on the sores in Logan’s mouth and all of the other terrible side effects during chemotherapy, it is truly a miracle of science and prayer that Logan is in a position to be learning like he is.

Sleepovers and Cousins

And things are becoming, dare I say it, boring. Regular, non-chemotherapy, boring stuff is happening. Donna and I look forward to sleepover nights when Logan or his cousin Griffin come to hang out with us. And earlier this year, Amanda and AJ took a well-deserved one-week vacation and Logan stayed with us for most of that week. Coming to Mimi and Big John’s for fun is sure different than staying between rounds of chemotherapy.

Watching Logan and his cousin Griffin develop a friendship as they grow – see the picture in the pool above – is a joy to behold. That is, as you referee who has what toy, when! And do you know the name that Logan first repeated? Logan’s other cousin, and Griffin’s little sister, Harper’s. He clearly said “Baby Harper” months ago while Donna’s name was still “Titi” and I was “Tig.” Thankfully, we are now Mimi and Big John – and the world is right again. Boring, ya know? Praying that it stays that way.

Logan: So Far, So Good

July 2022 Vacation: Jeff, Bridget holding Griffin, A.J. holding Logan, Kevin

Update at 3 months post-chemo

Logan’s three-month post-chemo blood test in mid-July confirmed remission. As I have written before, remission is as good as it gets. Early in July Logan swallowed his final antibiotic dose related to cancer treatment. So for now, no more meds, though monthly blood tests will continue, and our prayers are always that the leukemia stays away.

What this continued remission allowed was Logan and Amanda and Austin to join the family for a fun vacation in Austin. The results allowed Logan to swim in the pool and hang out with us all. Logan’s Uncle Kevin from Florida had never held Logan, and so this was a heart-warming milestone. The picture above shows our children and grandchildren during that vacation. Even though it was 106F and late in the day, all had big smiles including Griffin and Logan. It was hard to imagine the entire family being together like this while Logan’s leukemia was being treated amidst COVID. A vacation seemed so foreign during those months in the hospital.

What if…

We know that the story at this point could be much different. One evening earlier this summer I was helping Amanda hang curtain rods in their new home and she seemed quiet. I asked if she was OK, and Amanda shared that she had received an email from a parent she met in online cancer support groups. (The support that the ‘cancer kid’ parents supply to each other is awesome.) That parent had sent Amanda pictures of his little three-year-old daughter’s funeral. His daughter had the same leukemia type that Logan had, and her medical team was never able to get her into remission. How her diagnosis and treatment was different from Logan’s I do not know, but I can tell you this little girl’s story gave me pause and has me tearing up as I think of her.

Our trooper Logan during his hospital stay, March 2022

Play

What I saw during the family vacation was a super-sweet toddler finding his way among a kinda-large crowd of people, some unfamiliar. Donna and my four children and their significant others and the grandchildren were together. Watching Logan interact every day and play with his older cousin Griffin is what Donna and I were most anxious to see. Of course as has been previously noted, lots of precautions were in place during treatment to keep Logan safe. And those precautions kept the cousins apart during the chemo treatments. But this summer over the last couple of months, Logan and Griffin have had several play dates as parents and siblings A.J. and Bridget have been getting together over the summer. Prayers answered.

The above hospital picture of a forlorn-looking Logan was added mostly so we can all remember the impact that chemo treatment has on kids. Such a difference from the first picture, with Logan’s blonde hair and huge smile. Logan’s fight with leukemia has changed me. I will be a better family member, friend, neighbor or co-worker when I hear of a cancer diagnosis. I am embarrassed at how cavalierly I reacted to such news in the past, and that will change.

We cannot schedule a parade because of a three-month blood test. But what we can do is take the advice of a cliche and live each day that is given to us as if it were our last.

Logan, Baby Jail

I stole “Baby Jail” from Mike, Amanda’s Father. Mike has used the term on social media and it is a great description of this part of Logan’s treatment. Because…waiting. Stuck in the hospital. Chemo ended about a week ago, and Logan’s immune system has not started to recover. So, Baby Jail.

Treatment

Logan received platelets on Wednesday. And although early last week his hemoglobin paradoxically increased, it eventually started falling as it should have. In the next couple of days Logan’s hemoglobin will fall to the level to prompt a transfusion of red blood. He’ll need them, because Logan’s a 15-month-old toddler who bumps into things, and we noticed bruising during our FaceTime call Sunday evening. Bruises come easily for cancer patients at this point.

Family

Donna and I are quarantining in anticipation of returning to the hospital to help out Amanda and A.J. later this week. We had a great time with Griffin last weekend, and since then have kept to ourselves so we can be sure to not bring any infections to the hospital. While we have not been at the hospital, Amanda’s family has been so, so generous with their time. Above you see Grand Mike with Logan, and below you see Grams Kimberlee reading to Logan.

And Amanda’s brother Chris and wife Casey spent 24-hours in the hospital with Logan from Saturday to Sunday afternoon yesterday. They have done overnights previously, and that time away from the hospital gives Amanda and A.J. a much-needed break from Baby Jail. A.J. said that he slept for 12-hours straight.

Kimberlee, Grams, reading Logan “Never Touch a Piranha”

The estimated discharge for Logan is “late April.” Discharge is dependent on Logan’s immune system and his body will be ready when it is ready. Five rounds of chemotherapy and recovery takes its toll, and yet Logan is doing great. Social media pictures and video show him smiling and dancing and learning new skills, which is a blessing. But we know that he is curious of the world outside of the hospital, because FaceTime calls with people and places he does not know fascinate him. We are all ready – maybe impatient – to return him to the outside world.

Logan, Chemo No More

Logan via FaceTime, w/ Amanda in background, & A.J.’s donut-sugar pants + Big John

Chemo Complete

As of this afternoon, Saturday March 12, Logan received his last dose of chemo via 2 injections in his thigh. This is the second of two identical series of the Round 5 chemo protocol, one week apart. These last 2 shots followed the four loooong 3-hour infusions of chemo drugs over the previous 48 hours. We are praying for no more chemo ever, with “remission” all we hear from future blood draws.

While the chemo is complete, Round 5 is not. Now the wait begins for Logan’s blood counts to drop to zero. Then in the absence of any immune system, lethargy follows, and the need for red blood and platelets. (The need for blood donations for Logan and other cancer patients is constant.)

Just after Logan’s last dose of chemo today, both Amanda and AJ’s families joined a celebration Zoom call. This afternoon Casey and Chris delivered champagne and flutes to the hospital for the call. Zoom toasts were made. To the end of chemo. To teamwork. To Amanda and AJ and their dedication to Logan.

The end is in sight.

Better this time around

This 3-day protocol was a repeat of last week’s same regimen when Logan was so sick. He tolerated the chemo this week much, much better than last week. No nausea, no vomiting. And he was also able to tolerate tube feedings. Really necessary since Logan’s weight dropped over the last week. A.J. and Amanda shared that Logan has been hungry but nothing really tastes good to him, so he does not eat much. Tube feedings continue.

Maybe two reasons that Logan tolerated this week’s chemo as compared to last week: Either the now-prescribed IV tylenol to keep his fever down was an absolute necessity. Or he had an infection and/or virus that hit him at the wrong time last week and has since resolved. Logan was for sure diagnosed with C-Diff, a bacterial infection for which he was treated with antibiotics. There was also talk of rotavirus, and since it is a virus, antibiotics are of no help. Whatever the case may be, we are happy that Logan did not have to endure quite so much during this week’s treatment.

Griffin TV

The picture above shows what A.J. calls “Griffin TV.” Logan is mesmerized by his cousin Griffin during FaceTime calls. Logan stares intently at the screen while Griffin runs around, plays with toys, and babbles away. Griffin stares back. I am genuinely looking forward to the time when these two can be together and play together and get to know each other. That time will soon be here. Griffin happens to be at Mimi Donna’s and Big John’s house this weekend as parents Bridget and Connor are away, so our FaceTime calls are action-packed with the two grandsons.

Now we wait the long wait for Logan’s blood counts to drop to zero, and then for his little body’s bone marrow to recover and start making red and white blood cells. That is weeks away. Chemo is complete, but their hospital stay is not.

Logan Update & Griffin – Choosing

Logan on New Years Day FaceTime with Big John and Mimi

Update

Logan and Amanda and AJ are enjoying a wonderful & long New Year’s week break from the hospital. Discharged last Tuesday, the week is being spent at Amanda’s brother Chris’ and his wife Casey’s home. Round 3 of chemotherapy is complete, and round 4 begins Monday morning. Past the halfway mark on this cancer fighting journey, and the end is in sight! Casey and Chris are wonderful hosts and it is joyful for us to see the love that continues to surround Logan. Amanda’s parents Kim and Mike have been able to visit daily, making it a complete family fun time.

If you have seen any social media pics Logan is now, fully, walking. He was walking a bit – 10 steps or so – during his break between rounds 2 & 3, but now that he has been unleashed again from the 6 foot by 6 foot toddler-containing inflatable pool, Logan is clearly on a mission. Great to see!

Medical issues, of course, are a constant. Early during this week’s hospital break they received word that a blood test showed a too-high level of Logan’s antifungal. Back to the hospital they went, for an unscheduled blood test to validate the concern or deny it. Luckily the drug’s level dropped from the 5-times-higher-then-it-was-supposed-to-be to an acceptable level. The concern? This drug that is supposed to keep Logan from a fungal infection could harm his liver and/or kidneys if at too high a level. Remember this is serious business, and all drugs are poison at too high a level.

Amanda and AJ’s Home Build

Amanda and AJ’s home that is being built in Arlington is a parallel story to this cancer fight. They sold their previous home in Dallas quickly, and their new home is taking about a year to build. Before Logan’s diagnosis Kim and Mike were hosting the temporarily-homeless family in their Bedford home. Now every week AJ and Amanda receive house-build updates as walls go up, electrical is installed and windows enclose the structure. The completion of Logan’s cancer treatment may occur at just about the same time the home is ready. A really, really fresh start would be wonderful, post-chemotherapy in a new home.

Choosing

Griffin taking a glow-stick bath at Mimi & Big John’s home

Donna and I have not seen Logan in person for some time, as we made the decision to unquarantine for the Christmas holidays so we could celebrate with family and friends. I must tell you that this is harder than I thought it would be because we want to see both Logan and Griffin. We do not like choosing.

I know, know, there are many grandparents who because of distance or other reasons cannot see their grandchildren on a regular basis. But both these boys are here, in this town, minutes away. And whether we like it or not each time we choose to quarantine for Logan, Griffin is left out along other family and friends. And when we choose to unquarantine, Logan is left out. I find it agonizing, and yet I believe we are doing a pretty good job of it.

Balance

The Christmas season has been both joyful and unconventional. The Arboretum holiday lights were visited twice. Once with Amanda and AJ and Logan during their earlier break between rounds 2 & 3. And then later with Jeff, Alexis, Bridget, Connor and Griffin. The Dallas Zoo lights were also visited twice. 2021 was just not the year for large family holiday outings. And for us it was about more than the pandemic. Now, we all could not fit in a car together to see the zoo lights in one trip. But Donna and I could sure take grandsons together next year. (All the parents can go have a drink while Mimi and Big go to the zoo lights with the boys. Griffin and Logan have not been able to “be cousins” since treatment began.)

Amanda’s parents Kim and Mike are also balancing things as best they can. Kim helps her elderly parents a great deal, taking them to doctor’s appointments amongst other things. Over the Christmas holidays, Kim and Mike have been visiting with Logan and family. That meant they chose to not be with Kim’s parents. But now Kim and Mike need to unquarantine so that Kim can return to helping her parents.

Kim and Mike’s need to unquarantine prompted Donna and me to begin our quarantine last Tuesday. We both have COVID tests scheduled on Tuesday this week which will allow us to return to seeing Logan and Amanda and AJ. Choreography is needed so that we can all help – and most importantly keep Logan free from infection. I am grateful for Kim and Mike, and to Chris and Casey, for their wonderful support.

Please continue to keep Logan and his parents Amanda and AJ in your prayers as this journey continues. Happy New Year – we intend ours to be!

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, 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 & 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?

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.

Griffin at the State Fair

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.

Tag: Griffin