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Read more 'Leo updates': 2004 | 2005

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January 2, 2006

Happy New Year! ...

We've had a wonderful time together these past few days. Leo has been feeling pretty good throughout and we've not had to make any trips to the ED since the middle of December. He continues to receive platelets about 3 times a week and red blood about once per week; all done at home by the home care nurses. He continues to be on two different types of IV antibiotics , receives IV fluids overnight, and takes his medications to suppress his blood counts (hence the transfusions). This routine has kept his white count in check (it has been as low as zero, but not higher than about 1,000 in the past two weeks) and kept him feeling pretty good throughout.

We had a great Christmas together in the morning and Susan's side of the family from Columbus spent Christmas day afternoon at our house (we normally go there in the afternoon). We had a nice visit and exchanged gifts. Our friends from Dayton came on New Year's Eve. We've known them since Leo and their son were in day care together. Every year, they come to our house and we cook a huge meal (this year was beef tenderloin, lobster, green beans, garlic mashed potatoes, maple-shallot salad, and vanilla ice cream with Kahlua - - the kids had tater tots, chicken nuggets, and sparkling grape juice) and wait for the ball to drop. It has become quite a fun tradition. We took our annual new years day hike in the woods (Cincinnati Nature Center) to clear the cobwebs of the week and to reflect upon the year past. This too has become a great family tradition because we begin the year doing something we all love to do and allows us reconnect a little bit with nature after all of the Christmas consumerism (well...that's how Susan and I feel, for the kids, it's likely just a walk in the woods).

I know it has been a few days since I last wrote. Everything is going as well as it can. We will be starting this other therapy at some point and are contemplating when is the right moment to begin. We don't want to start too soon, but don't want to wait until it is too late. We are relying on the doctors to help us with the timing. We are enjoying each day and not really worrying too much about tomorrow. I will keep you posted. Keep the faith.

Stay positive, you guys are WARRIORS!!

Jeff, Susan, LEO, Henry and Kay

February 14, 2006

Happy Valentine's Day.....

Leo has been 'okay' these past couple of weeks. He's not spent any unplanned time at the hospital, but has battled a sore mouth for some time, recently for a different reason than before.

It is obvious to say, but AML is a horribly relentless disease. A few days without chemo and his gums are sore because the blasts are back. A few days on chemo and mouth sores show up. Leo is feeling the strain as this is the first time in all of his treatment that he hasn't quickly recovered from a symptom or side effect, yet he remains willful and resolute. We've tried to assure him that whatever he is doing, it is enough. Eat or don't eat, it is enough. Lie around all day or not, it is enough. Whatever....it is enough. We know we cannot continue on this path forever and will have to proceed with his remaining treatment. As you are praying, I would ask that you pray for wisdom and discernment for Susan, Leo, and me as we go through this decision so that we can do it at the right time for the right reason.

Stay positive, you guys are WARRIORS!!

Jeff, Susan, LEO, Henry and KayFebruary 26, 2006

Busy, complicated, tiring....

Leo is doing okay with his new chemotherapy. He tolerated the new drug very well, but the cytarabine seems to be causing some problems that we've not had before even though it is not a new drug for him. His temperature has been all over the map; anywhere from 103.5 down to 97.0. The lows aren't so bad, but the highs are concerning because we cannot ignore the possibility of infection. It seems like we spent a night at the hospital this week because of fever, but I honestly cannot remember when it was...and neither can Susan - - it's been a long week. The other thing that is happening is that he is retaining fluid; here's why (if I can explain it correctly): There's a protein manufactured by the liver called albumin that causes fluid to stay in the bloodstream where the kidneys can process it out as urine. Leo has always had fantastic kidney function, so the retention is not caused by kidney problems. It's the albumin in his bloodstream that is low, and when it is low, fluid is not processed out of the bloodstream by the kidneys, but leaks into low-lying tissues like ankles, legs, and cheeks (when sleeping). So Leo is quite puffy now and has been given a diuretic (lasix) to try to get some of the fluid back into the bloodstream. Lasix works by causing the body to think it is dehydrated, thereby causing the fluid to be resorbed into the bloodstream. At the same time, the dietician is gonna adjust the amount of albumin in his TPN so as to not get behind again. Oh, and needing red blood also complicates the equation. Strange new things happening here.

As an illustration of the week's events, the following happened between 4:30AM and 10:00PM Friday:

4:30 AM: Leo feels nauseated (first time since this chemo) and has a fever. We speak numerous times to the doctor between 4:30 - 6:30 trying to figure out whether to go to the hospital. Leo starts to feel better in about 30 minutes and goes back to sleep.

9:00 AM: Fever down. Susan notices his chemotherapy carrying case is wet. Chemo is leaking! Ugh! More risk of infection. Susan discards leaking chemo and starts a new bag.

12:30 - 3:00 PM: Home health gives a red blood transfusion. No reactions, everything good, good. Susan receives flowers from good friend (makes me look bad). Susan receives a nearly perfectly-crafted care package from Grandma Scooter (her mom) consisting of pajamas, new makeup, and new shoes stuffed with samples of Ambien (sleeping pills).

4:00 PM: A critical piece of equipment at my work fails. It is needed for a executive-level meeting on Tuesday. Vendor is called on the west coast to scramble to ship a replacement part to arrive on Monday. Also find out that equipment ordered in January for delivery by March 1 has not yet been manufactured! What the....? Work day has fallen apart....

5:00 PM: Leo is taking a nap on the heating pad sitting in the recliner in the full sunshine. Temperature is 103.7. Note to self...close the blinds and turn off the heating pad while napping.

5:30 PM: Get fantastic dinner delivered by church friends. I am still at work when the rest of the family eats, so eat the brisket, beans, and cole slaw sorta all mixed up in the same bowl when I get home. It was delicious.

6:00 PM: Lab results from earlier in the day indicates that Leo's platelet count is 11. He needs platelets....there are no platelets (single donor) available in Cincinnati. He'll get random donor platelets.

6:30 PM: Received phone call that starts with "Don't worry, everybody is okay..." Henry and Kay are in a car accident on their way to their elementary school carnival. A good family friend's son and daughter were taking them as a favor, and a car pulled out in front of them. Nobody hurt, friend's 12 year old minivan is not damaged enough so that the son can get a new car.

8:00 PM: Take Leo to hospital to receive platelet transfusion.

9:03 PM: Receive a call from the vendor on the west coast stating that they did not get the part identified and shipped in time for Monday delivery. It will arrive first AM on Tuesday (10:00AM), require 2 technicians 2 hours to install. Meeting starts at noon.

9:30 PM: Arrive home from hospital.

On Saturday we went to the Cincinnati Car Show. A colleague at work had a connection to the show's promoter, so we were able to go into the exhibition hall 2 hours before all of the germ-infested crowds of people showed up. It was fantastic for Leo...he had a great time (picture attached).

The good part is that we feel like Leo has personal physicians. Both of his doctors were out of town for some of this week, yet we must have talked to them both no less than twice daily. I paged one at 4:30AM and he called back right away and said he was already awake! You can't get that kind of care if you are an adult. These doctors and nurses are truely the greatest. Leo's pain is now under control. He was using a cane for a couple of days due to his hip pain, but has now pretty much discarded it for the time being. There's been so much stuff this week that I'm sure that I've missed something I should be telling you. We are doing okay, Leo is hanging tough. He feels bad when he is sad about stuff, and says he doesn't "know why I'm feeling so sad right now". Well, WE know why, and it is okay. Hang with us. We need your prayers of comfort and strength. We are getting tired, but it's not so bad that we couldn't do this forever, if you know what I mean. Keep the faith.

Stay positive, you guys are WARRIORS!!

Jeff, Susan, LEO, Henry and Kay

March 5, 2006

Fought the good fight....

Leo's leukemia is still active. His white blood count has doubled each day for the past two days, which is a sign that despite this other chemotherapy, it has not been able to slow down the progression of his disease. There are other indications from his musculature and movements that indicate his leukemia may have entered his central nervous system. The doctors were at the house today talking us through different what-ifs and possibilities; none involve proceeding with any substantial treatment to induce a remission. I couldn't have imagined when we started two years ago that we would run out of things to do, but we have.

We've talked with Leo about all of this and he is fully aware of what it means. We asked him today if he was tired of fighting and true to his spirit said "Not if there is something else to do". God bless him; he has never given up, never wavered in his resolve, and never shown any sign that he was ready to quit. We also had some difficult but honest conversations with Kay and Henry tonight about how Leo is doing.

I can't really say anything else right now. As you continue to pray for us, would you please pray for Leo's comfort, pray that he is not afraid, pray for Henry and Kay's comfort as they grapple with their uncertainty and fear, and pray that Susan and I make the right decisions over the next days. Thanks for everything; I will update you as I am able.

Jeff, Susan, LEO, Henry and Kay

March 13, 2006

Heaven.....

Our beloved son Leo Gabriel Johnson died peacefully in his sleep this morning at home with Susan and me by his bedside. We are at the same time sad, heartbroken, relieved, and overjoyed that he has made his journey from this earth to the boundless peace, love, and beauty that is heaven. We rest tonight knowing that his spirit will always be among us and that we will always honor him as a member of this family.

We have only begun to make arrangements for services, so all that I am relating to you is somewhat preliminary. We are planning to have services at Crestview Presbyterian Church in West Chester, OH on Saturday, March 18. I will relate more specifics to you in the next day or so as they become more firm. We welcome everyone who would like to celebrate Leo's life; even if the only way you know us is through these emails, please feel welcome to come. If you are planning to travel from out of town (we have no idea how far this email reaches), there is some hotel information at the end of this message.

God bless all of you who have supported and prayed for us these past two years. I cannot express to you the affection, gratitude and appreciation that we feel for this community of folks who have followed Leo's journey. I'm certain that part of Leo's legacy to those left here is a simple message that we often lose sight of in just the living of our daily lives: love each other, be strong and tough in whatever it is that you face, and have hope in all circumstances. Leo did.

Jeff, Susan, LEO, Henry and Kay

May 17, 2006

How are you doing....?

I've meant to write an update sooner than this, but every time I've tried to begin one, it seems that I immediately lose momentum. What can I tell you about the two months since Leo died? That we miss him? That we grapple with the grief every day? You guys already know those things as we've received many cards, letters, and emails during that time that tell us that you are grieving him along with us in your own way. Those pieces of correspondence are like gold, however, as they form a collective tribute to Leo. As we begin to emerge from this time near his death, we are beginning to see a picture of what might become his legacy for those left here on earth. "I've slowed down", "We're spending more time together as a family", "I was so inspired after leaving the memorial service" , "I made a promise to myself during the balloon launch" and many other heartfelt messages have been sent. We consider all of those gifts to us and an honor to the way that Leo lived his life and touched many others. Thank you for sharing your thoughts about Leo and his memorial service with us.

I would also like to extend my thanks to all of you who have donated to either the Make-A-Wish foundation or the Community Foundation of West Chester and Liberty Townships. You have generously donated over $6,000 to Make-A-Wish, more than enough to fulfill a wish for another child, and over $8,000 to the community foundation. Wow! THANK YOU. We have yet to decide on a project for the foundation donations - - it's been something on our list to figure out but has of late escaped our attention.

We spent some time over spring break in Chicago. It was really good to get away for a few days and enjoy being a family again. We spent much of the time exploring the museums and connected with some old college friends ("Big Katherine" as we affectionately call her - even to her face; her husband and kids) who came into town from Cleveland to spend Easter with their family. We also ran into one of Leo's oncologists at the Rain Forest Cafe'! Talk about out of context. We ended up seeing her all over town those few days.

Keep the faith,

Jeff, Susan, LEO, Henry and Kay

Read more 'Leo updates': 2004 | 2005

> More about Leo ...

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