December 2021 -

Christmas & Cancer & COVID

Christmas 2021 via FaceTime and windows – literally windows

Logan Update

Merry Christmas, though I am not all that merry. I woke up concerned for Logan as our FaceTime call last night had him fussy and not in a great mood. So as I begin to write this very early on Christmas morning, I am waiting for a call to see how he is feeling today. Teething could be the culprit. Or maybe his anti-fungal med called Vouri (spelling?) which causes him discomfort. (That med is transitioning to oral delivery as Logan’s discharge is anticipated soon. So this change may be impacting him.) Or maybe he along with Amanda and AJ are just tired of the hospital. Whatever the reason, he was not his normal happy self, so that concerns me.

Update: We received my morning FaceTime call on Christmas day, and Logan is doing well. Not quite awake, but certainly feeling better than last night. And so Big John is a bit merrier. Logan’s white blood cell count is still at zero, meaning a few more days in the hospital. We were all optimistic that Logan might have been out by Christmas because of his fast recovery after round 2. But the fact is the “typical” rebound after this 3rd chemo round would have him released mid-next week. So, things are as they are, and Logan will be released when he has an immune system to protect him.

COVID

Our tradition for years has been to celebrate Christmas on Christmas Eve. Sadly, Kevin remained in Florida this year as he just recovered from COVID. His girlfriend Sydney then got COVID, and so she is still feeling the effects. We shipped gifts and used FaceTime while we gathered in Texas last night. Recently I have heard of numerous others who have had COVID, and this surprises me. It took 18 months into a pandemic to hit close to home. My Uncle Mike and his daughter Erin have COVID running through their family. My nephew Mike is recovering from COVID, too.

The good news, I guess, is that vaccinated people typically do not end up in the hospital. My family members worked their way through the aches and pains and lethargy. And so it seems that we are figuring out how to deal with this COVID thing, which appears to be with us for the foreseeable future. Or maybe forever.

Surprise Guests – Through the Window

Amanda and AJ on the patio, joining us through the window

In the first photo, perhaps you missed that Amanda and AJ actually celebrated with us on Christmas Eve. The second photo has them enlarged, and AJ is clearly seen through the window, with Amanda on the left. So happy that they were able to join us. It was reminiscent of Thanksgiving 2020 which we celebrated in Bridget’s backyard. Glorious weather allowed an outside gathering, and Amanda and AJ sat at their own table as Amanda was soon due to deliver Logan. Social distancing was needed given, well, COVID. Glorious 80-degree weather again yesterday allowed similar participation through our side windows. I am grateful to Mike and Kim, Amanda’s parents, who watched Logan at the hospital during our gathering. Amanda and AJ’s diligence in social distancing has paid off, as Logan remains infection-free. Praying this continues.

Of course, we said grace before our meal. And grace came easy to me. Then I wanted to say a few words about looking forward to gathering together in the future, in the same room, all of us. And it took almost no time for me to choke up as I was speaking. My words were few, because what I said was all that I could get out of me without crying. While I remain grateful for our gathering, I miss those who could not join us.

Merry Christmas

Time to ask Spotify for Christmas songs. Because in the immortal words of Buddy the elf, “The best way to spread Christmas cheer is singing loud for all to hear.” That will make me merrier.

So, for all who are ill, or separated, or lonely, I do wish you a Merry Christmas. I pray that you find joy in the arrival of Christ today.

Logan – Father & Son

Facetime: Logan & AJ, Kevin, and Big John

Update on Logan’s Treatment

It looks like Logan and Amanda and AJ will be celebrating Christmas in the hospital this year. There was a small chance that Logan’s “numbers” might improve to allow a discharge for the holiday before the next chemo round. Two days in a row of growing numbers are needed. But his white blood cell count is still at zero as of this morning. So, the wait continues. Without white blood cells the risk of infection and inflammation are too great to allow Logan out of the hospital.

So FaceTime will be a big player on Christmas. It already has been keeping all of us in touch as you can see from the pic. That FaceTime call connected AJ & Logan at Children’s Hospital in Dallas, me in Irving, TX at work, and Kevin in Florida. Kevin is not joining us for Christmas this year as he is just recovering from COVID.

Lyrics from Yusuf/Cat Stevens

“It’s not time to make a change. Just relax, take it slowly. You’re still young, that’s your fault. There’s so much you have to go through. Find a girl, settle down. If you want you can marry. Look at me, I am old, but I’m happy.”

It is just a beautiful song. When I was younger I did not appreciate Cat Stevens’ music, but if you look on my Spotify account his songs are high in my rotation. This song describes an exchange between a father and a son as the father cannot understand that his son needs to break away and find a new life. Do what I did” the father advises his son, while the son is looking to break away.

Text Exchange

What does this have to do with Logan? Some context: Sleep has been the most difficult aspect of the hospital stay for Logan and Amanda and AJ. The comings and goings of the staff, the treatment, the lights, the noises all conspire against a full night’s sleep. Amanda and AJ are forced to be creative about how to get Logan to sleep and how to sleep themselves. Music is a part of this.

I received a text one recent evening from AJ:

“It was a mistake to sing Logan Father and Son. I got to the lyric “there’s so much you have to go through” and just started crying. Good news is Logan is still sound asleep on me”

My reply:

“It’s a great song with meaningful lyrics. And all of us do need to go through a lot. Logan sooner than most of us. You and Amanda are right now going through a lot. Together. Emotions are good to experience. That you are singing to your sleeping son, soothing him to sleep, well, that’s what makes me cry happy tears.”

The pride that I have in AJ is immense. He is really the epitome of a good man, and he and Amanda are great partners during Logan’s treatment. Logan is blessed to have them both.

Logan – Update & My Bargain with God

Update

Logan’s blood counts have dropped to zero. The chemo from round 3 has done its job, and he is receiving blood transfusions and platelets as needed. If you are a blood or platelet donor and wonder where your donations go, wonder no more. (Shameless pitch to donate if you are able…) Now, we wait as his body recovers.

Logan tolerated the chemo, and my FaceTime with him and Amanda yesterday afternoon was joyful. He was in such a good mood. The chemo treatment protocol is now in the second half with rounds 4 and 5 ahead. The doctors commented how great/surprising it is that Logan has not had an infection. I credit Amanda’s and AJ’s diligence to keep him safe and “clean.” Please pray for Logan’s strong little body to recover once again, and for his parents as they continue the journey with him.

My Prayer

This post sat in “draft” for a long time – months now. I have not posted it because I was embarrassed and ashamed of it. Well, now, during Advent I am posting it – mostly because it is the truth. Writing this blog is cathartic for me, its primary purpose. But I also hope that others can understand the journey from my perspective, a grandfather’s perspective.

Here goes: During Logan’s round 1 chemo, every night as I was falling asleep the same prayer went through my head. It was simple. I asked God to cure Logan’s cancer and give it to me. This was my prayer as Logan was beginning treatment, when so much was uncertain. Before remission.

I do not wish to die or be a martyr – on the contrary I have told anyone who might listen that I am “aiming for 90.” And yet, my life has been – is – wonderful. I have everything that I ever dreamed of. Wonderful and loving wife Donna and children, great friends, rewarding job – ya know – everything.

Catholic Guilt

But…Logan. Logan has not had the chance to build a life in whatever way God leads him and Logan might choose. And he deserves to have the chance. Hence, the prayer. I am no doubt praying wrong, trying to bargain with God. I feel I need to go to the Catholic sacrament of reconciliation and confess my sin to the priest and ask for forgiveness. In fact, yes, I intend to have that conversation with a priest in the confessional.

And so now, with Logan in remission and recovering from chemo round 3, my bedtime prayer has been, “Lord, we had a deal, and I am ready when you are.” Wow. Really? Again, who am I to tell God what to do? And now to presume that Logan’s remission had anything to do with my prayer? The arrogance of that is beyond measure. Shame is what comes with that arrogance, I can tell you that.

Prayers of Others

But here’s the thing. I wasn’t the only one with that same prayer, bargaining with God. An elderly friend and cancer survivor had a relapse and was scheduled for surgery during Logan’s first round of chemo. That friend said they were asking God to take them and spare Logan. This is absolutely incredible to me. What an unbelievable prayer for someone who had not met Logan or his parents Amanda and AJ. When I have previously written of the love that has come our way in support of Logan’s battle, this is an example. So much love that me writing this sentence has my eyes well up in gratitude. That friend passed away from surgical complications. I will think of them and pray for them always.

It never occured to me that I would be in a position to think of such a prayer and actually pray it. How many others are in my position? How many others would gladly trade their lives for a grandchild’s or other loved one’s? Based on the amount of love shown my family during this experience, many. Based on what others have shared with me about their prayers during difficult times, many.

The love that has come to my family has come in many ways, and so much through prayer. From all of you. I believe that your prayers are being answered. For skill of the medical teams, for strength of family, for Logan’s tolerance of treatment, for a minimization of long-term side effects from the treatment. Thank you for your prayer. It matters.

Pope Francis’ Tweet

So I follow Pope Francis on Twitter. (Oddest sentence I have written so far.) His tweet from this weekend caused me to finally publish this post:

“God never tires of waiting for us. When we turn away, He comes to look for us; when we fall, He picks us up; when we return to him after losing our way, He waits for us with open arms. His love is always and gives us the courage to start anew.”

For me, in Advent, as we prepare to welcome the Savior of the World, I know that God does what He does in His own way and time. I trust. And I am ready, whenever. I have always been ready.

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.