leukemia Archives - Page 4 of 4 -

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

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

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.

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.

Logan, Bone Marrow

Donna and me at a pre-pandemic “Light the Night” walk

It is unknown whether or not Logan will need a bone marrow donation. The need is dependent on how his little body responds after the chemotherapy. But Logan might need bone marrow. And I know that right now there are many blood cancer patients who are looking for that life-saving gift. Many have asked me what they can do to help Logan, and my answer now is going to be, ‘Please register as a bone marrow donor.’ If you are between 18 and 55 years old, you could match.

It turns out it is “Swabtember,” an action month designed to encourage people to register as potential bone marrow donors. In fact, if you are attending the Texas Rangers baseball game the evening of Tuesday, Sep 28, you can register as a potential bone marrow donor on the suite level in left-field. I know, last minute; no time like the present! And Major League Soccer features September as “Kick Childhood Cancer Month.” On Wednesday, Sep 29, FC Dallas plays in the Kick Childhood Cancer match at Toyota Stadium. The point of this is that there are events that support the fight against leukemia and other cancers. Please take advantage of them.

Donna and I have walked in several pre-pandemic Leukemia & Lymphoma Society “Light the Night” walks. My company was a sponsor of those walks, and we walked in honor of our friend Gary who died from leukemia decades ago. I can still remember talking with Gary as he was going through treatment, very difficult treatment. Much has changed in fighting these cancers since then, giving us all confidence that research over the years will put Logan in remission and keep him there.

Logan, Chemo

Kevin and me dropping off coffee this morning to AJ at Children’s

Logan’s chemo treatments started Thursday evening and will last through Oct 3. At that point his immune system will be nonexistent. Then a couple more weeks will be spent in isolation at the hospital to allow his white blood cells to regenerate. After maybe two or three days at home, the cycle will repeat itself several times more. A long road, this is.

Yet when you see Logan on FaceTime, he looks great. One doctor who visited remarked, “You would never know that Logan is sick.” So I pray that Logan continues to tolerate the treatments.

Necessary care means that throughout the night, nurses visit to monitor Logan’s vitals and to make sure his diaper is changed. Apparently the chemo drugs are excreted through urine and bowel movements. And so it is important to keep the diapers as clean as possible. The hard-fought ‘sleeping through the night’ is a thing of the past. Logan’s care wakes up all three of them throughout the night, and AJ remarked this morning that the night cadence is similar to when Logan was newborn. So Amanda and AJ are tired. I pray for Amanda’s and AJ’s well-being as they accompany Logan in this fight, as it is just beginning.

A visit to the hospital looks like the pic above. Hugs are ‘no bueno’ with the start of chemo. We social distance, and we wear masks. There is a 5- or 10-minute conversation along with the drop off of coffee. Maybe we pick up dirty laundry or return clean clothing. Whatever it takes, we are there. Thank you all so much for your continued prayers and good wishes.

Logan – Treatment Options

Mimi and Big John and newborn Logan at home last Dec 2020

Tuesday, Sep 21, 2021

The diagnosis continues. Logan appears to have a rare form of leukemia with only about 100 cases in the last 15 years. Chemo has not yet begun, because the medical team is determined to provide the absolute best treatment, and the treatment depends on the diagnosis. Given the leukemia strain’s apparent rarity, consults with other doctors are in process and take a little time. Focus is on getting it right.

I am anxious to have the medical teams start attacking and killing the cancer, but I know what that means. Poisoning this precious young boy. Logan will not know what is happening, and his parents Amanda and AJ will do their best to comfort him and love him through it all. And we are here to comfort and love them through it all.

Wednesday, Sep 22, 2021

Hmmmm. Still waiting. The doctors are being super careful to identify the proper drugs and timing to not only get Logan into remission, but also to keep him in remission. The treatment decisions now are critical to the remission success. That means that leukemia variants need to be tested for and eliminated. And because Logan’s cancer seems rare, there are only a few machines in the country which can properly test it for variants. Machine reading is then weighed against a human pathologist’s reading of the slide. The “art” part of medicine is in play here. So we wait, so the doctors can do their absolute best for him.

This does not mean that I am patient. On the contrary, I am an impatient person to start, and so this delay is maddening. Necessary, but maddening. Let’s get on with it.

Logan – Waiting

Logan and AJ on FaceTime with Big John from the hospital

Sunday, September 19, 2021

Results of Logan’s bone marrow and spinal procedures on Friday (Sep 17) are promising. However, treatment is waiting on confirming the type of leukemia that needs to be treated, and that requires a review by pathologists on Monday. That means today is a day of hold, a day of waiting, a day of prayer.

News of Logan’s disease is now being spread. To extended family, friends and workers. The love that is coming back in return is so genuine and heartwarming that it cannot help but lift spirits. I need AJ and Amanda to know that so many people are praying for them and Logan that God is hearing those prayers in stereo. Prayers for their strength. For the skill and compassion of the medical team. For healing.

I so appreciate the prayers but let me tell you I am angry. Angry at God that these prayers are needed at all. Logan is so little. Can someone explain to me why a 9-month-old has cancer? So, I am in the position of both being angry at God and praying to him. Nope, does not make sense. And yet, there it is. I wish I were a better Catholic and understood scripture better and could have some sort of theological explanation for this.

And so while my faith is being tested, technology is helping. FaceTime is our connection right now. This technology brought people together during the pandemic and is now allowing us to see and hear Logan and AJ and Amanda. For both our grandsons Griffin and Logan, they know what a FaceTime call sounds like. They grew up with it. When dialed, they both expect there to be a familiar face on the other end, and we do our best to answer so that we can see their smile. When either Griffin or Logan sees me or Donna through FaceTime and smiles, well, it is just the best. For now, I’ll take FaceTime, while I hope soon to be on the floor with Logan playing again.

Logan has Leukemia

Big John with Logan as he arrived home for the first time in Dec 2020

Saturday, September 19, 2021

Our sweet grandson Logan has leukemia. Son Austin (AJ) and his wife Amanda took him to Children’s Hospital on Thursday morning for follow-up blood tests. At the time, the chances of cancer were 10%. By the afternoon, it was 90%, they were staying overnight, and a caring nurse told them, ‘Look, this is leukemia; prepare yourselves.’ They have not left the hospital except for picking up packages and food from family. AJ and Amanda are just wonderful as they begin this journey together.

It started as maybe anemia. Or ITP (low platelets). Logan’s unusual blood results from his 9-month checkup peaked his pediatrician’s interest, as did the bruises on his legs. Thank God that this doctor was skilled, paid attention, and ordered more tests. Sooner diagnosis is certainly better than later.

Last Friday (Sep 20) Logan had surgery to insert a central line, bone marrow biopsy, and spinal fluid draw. It is now Saturday, and the results appear to show that he has AML but does not have ALL. Doctors are testing for variants of AML so the chemo drugs can be most effective. I knew very little about Leukemia, but I am learning.

What I do know is that I am now randomly crying/sobbing. When I am shaving, or driving, or simply walking around the house. When I try to say the words “My grandson Logan has Leukemia,” I choke up, cannot finish the sentence and start crying. When I write the words, tears roll down my cheeks. Please say a prayer for Logan and Amanda and AJ. They desperately need them and want them.

(PS: I have not posted for a while, but I have been writing. I have permission from Amanda and AJ to share my posts. I am adding a byline date for any blog posts from past days. )