More waiting this week, as Logan’s body works its way through the trough of low blood counts. He received both red blood cells and platelets each a couple of times. Logan has tolerated these infusions quite well.
The red blood infusions take 3 hours, and that is a LONG time for a 15-month-old to stay in one place. So waiting until Saturday morning to start the infusion might not have been the best plan. But Logan needed the blood. And thanks to the Disney+ movies of “101 Dalmatians” and “Lady and the Tramp” the infusion was completed with no issues. Movies with dogs are preferred, you see.
There is a lot going on in the picture above. The line with the red blood running across me. The iPad with 101 Dalmatians. Logan with the polar bear from the safari truck. (Polar bear & safari truck, what can I say?) A “breakfast” plate with sausage, french fries and pizza… if Logan will eat it, well, we order it for him. He needs whatever calories he will consume. And a turned-over play table in the back corner. Remember, a 15-month-old.
My Saturday morning time with Logan was fantastic, and both Donna and I are happy to be able to see him. While Donna and I have rotated back in as helpers, Kim and Mike are rotating out, so it is a team effort. Aunt Casey and Uncle Chris relieved me yesterday afternoon and again spent a Saturday night with Logan. This is a massive gift of love and time that is so needed and so appreciated. And Amanda and A.J. continue to be amazing examples of strength and partnership and love.
Hair
A close-up of Logan’s re-growing hair
Donna and I have been both keeping to ourselves for the last 10 days and liberally using N-95 masks. This is what allowed us to safely return to the hospital. Donna spent Thursday and Friday there, arriving early to allow Amanda and A.J. to go to Kim and Mike’s house to work/sleep. I relieved Donna late Thursday afternoon, and immediately noticed that Logan’s hair was growing again.
Logan was born with beautiful blonde hair. And seeing it sprout back among his remaining wispy longer hairs is a triumph. I cannot help but think of Spring, and Easter – and yes Logan’s hair – as signs of re-birth and joy and hope. We wait with optimism for hospital discharge.
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”
Next
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 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 and Logan & AJ via FaceTime
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 vomited at least 5 times yesterday. I don’t know how else to convey chemotherapy’s impact upon those being treated. It is a horrible experience both for the patient and for loved ones walking alongside them. From the start this blog has been an outlet for me to put into words what Logan and his family are experiencing during this journey. To get it out of my head.
But my objective has changed over the last couple of months. I am writing for an audience of one, Logan. So that as he grows older he has a record of the fire he walked through early in his life. So he knows that whatever challenges he will face – and we all know that more will come – that he already has successfully beat leukemia. That he can persevere against any challenge. Because cancer fights are as significant a challenge as any will face.
Admission
Logan had been out of the hospital for more than a month since Round 4, and the family has been anxious to begin Round 5. As I wrote in previous blogs, Logan’s ANC was not at a level that would allow the chemo to begin. On Wednesday Logan’s blood was tested. He also received an injection of a stimulant (GCS-F) to encourage growth of ANC. Who knew that such a thing existed? With that injection, there was a chance he could be admitted Thursday. As Amanda worked, Donna accompanied Logan and AJ to the hospital on Thursday to keep Logan busy during the wait. AJ texted me that ANC was just above 500, and the plan was for Logan to return and be admitted Friday. But then another text arrived soon after with “Nope, starting chemo today.”
And the wait for a hospital room began. The original plan was an admission for 3 days of chemo, discharge for about a week, then readmission for more chemo. But given the lower ANC starting point, the plan morphed into one, long hospital stay.
A Massive Chemo Dose
After the scramble to get into the room and as he slept, Logan had a 3 -hour long dose of chemo pumped into his body. Past doses of the various chemo drugs were 15- or 30-minute infusions. So his little body was hammered. It was a difficult night.
When I arrived on Friday at 7:30a, the little family was looking kinda rough. I walked into the room and asked AJ if he had slept. He replied, “A little.” Amada needed to work, so the plan was for them to go to our home for AJ to sleep and for Amanda to log on.
Early that morning Logan was doing OK. We were playing, and listening to a Spotify “80’s” music mix. The PA and the doctor did rounds. Speech therapy arrived and observed and gave some pointers. Drugs were administered. Donna then came so I could go to work.
Logan resting, with 3 lines providing meds, fluids, and nutrition
Nausea
Donna called me while I was in a lunch meeting and let me know that Logan was nauseous and vomiting. And her clothes had hazardous chemo-vomit on them. With Amanda and AJ needing to work and rest for what would likely be a tough night, I adjusted my schedule. A co-worker found a logo t-shirt that Donna could use, and I headed back to the hospital so she could go home and shower.
Logan was sleeping when I arrived – see the pic above. Forewarned regarding the nausea, I had gloves and towels and wipes at the ready. And the call button so I could get some help if needed. He began fitfully sleeping, or more accurately, writhing. Something was not right with him. When Logan sat up and began belching, I was able to prepare and hold a towel under his chin to catch the vomit.
And this happened three more times. It’s likely that we all have helped those sick with flu-like symptoms as they curl over a toilet. Tough to do. So you can imagine how absolutely heartbreaking it was to watch this sweet little boy get sick time after time. For him to not understand what is happening. To hold him and to keep the chemo-vomit away from him. To just let it happen. Tears that have not flowed in months returned to me. But know that Logan’s personality shined through each time the nurse would leave the room after he got sick. He would lethargically raise his little arm a bit, and give the nurse a slow wave goodbye. Precious.
A Long Stay
When the doctor did rounds that morning, he noted that this Round 5 was going to be a long stay in the hospital. Since Logan was first admitted last Fall, the treatment protocol number of rounds changed from 4 to 5. I asked about that, and he said that research has shown that the fifth round is necessary to increase the odds that the cancer does not return. And he admitted that this has to be balanced with the damage that the chemo does, the side effects that are inevitable.
As Logan and Amanda and AJ begin this last round of chemo, please continue to think of them and pray for them. Pray for all cancer patients and their families. We love you and are grateful knowing so many are supportive.
