Back Under One Roof
...and we're back.
We've been home 14 days and it's been a transition for sure. There are a lot of cogs that need to mesh to make for some normalcy. We've had to put all the pieces back in place that were separated the last month. Nothing we can't handle thus far but it takes a little time, and a little more time to handle it isn't surprising. Finally though, the family is back together under one roof.
So, what's different?
For one, not waking up to nurses or CNAs doing vitals and checking in multiple times at night has been wonderful...in other words, sleeping through the night every night. That is just an amazing thing in and of itself, it almost deserves it's own celebratory blog post.
Luke is with us every day again. Luke is 2 years old. He's not quite old enough to understand what's going on, so he continues to do his thing regardless. There is a phrase uttered in this household often that is really indicative of this boy we call Luke. That phrase is "You're lucky you're cute!" He is a bundle of positive energy that never stops, often leaving mirth and mess behind him. The mirth is great...the constant messes, not so much. He's lucky he's cute!
I am working again and Amy is staying home with Landon. She will be home with him until February vacation. After that, Amy will return to work and I will stay home until April vacation. It took a couple of days to get comfortable after being away from work for almost a month and not really being in a place to think much about it (and honestly, being afforded to not have to think much about it thanks to my kick-ass colleague, co-teacher, co-FLL coach, and collaborator). But I'm back in it and ready to roll.
Where does that leave Landon?
To start, he is considered to be in remission. This is great news! But, it doesn't change much besides our location in relation to the chemotherapy that he will continue to receive for the next 2 years or so.
Landon is on a fairly strict two year plan. Every drug and procedure has been laid out for us over those two years, in cycles. After the first three months or so, the length of each cycle will usually be 3 weeks. Some of the chemotherapy will be given at home, some by a visiting nurse, and some has to be given at the Jimmy Fund Clinic in Boston. These will be mostly be outpatient visits, with the exception of a weeklong inpatient visit back at BCH soon. In general, the first week of a cycle includes a set of chemo drugs; the first week into the second week the drugs do their jobs; and the third week his body recovers. His blood counts will vary obviously, reaching the lowest point the second week and recovering the third week. He will be more susceptible to getting sick and will feel really lethargic during the middle of each cycle, depending on the drugs he is receiving in that cycle.
There are also conditions that, when met, means Landon will be admitted as an inpatient back at Boston Children's Hospital. I'm not going to go over all of them right now, but they are basically indicators that he may be getting sick as a result of a virus or bacteria. For instance, if he has a fever of 100.4 twice in an hour, or 101.4 at all, we have to call the doctors and ask them what they want us to do. Depending on where he is in a chemo cycle, he will have to be admitted to the hospital until they are sure he is well again. This is because his body won't be very effective in fighting the sickness on it's own. This also means we are not supposed to ever give him tylenol to fight a fever. Doing this will inadvertently mask how sick he may be. If the temperature conditions are met, we will call and ask what they want us to do. If he is mid-cycle, he will probably be admitted. If he is near the end of a cycle and his recent neutrophil counts were good, they may just tell us to give him tylenol and monitor the situation. To be clear, being admitted back to BCH in these situations means that they are monitoring him in case they need to step in as back up for his immune system, it does not mean that the leukemia has returned. Blood cultures, lumbar punctures, and bone marrow biopsies are in place throughout the treatment to check for that.
Landon is doing pretty well the last few days. I will add to the "Landon's Journey" page in a few days with an update about it, but I will say that he's moving around a lot more and has been feeling much more cheerful. We are "getting our boy back" as we were told we would. It's good to be back in a routine and we are ready to move on through and come out the other side.
1/14/2020 12:47:28 am
So happy to hear good news. And yippee for Landon!
1/14/2020 07:23:25 am
I am so happy that you are all under one roof!! I’m happy to hear that Landon and Luke are falling back into their brotherly routine. The next two years sound quite busy. I wish you nothing but clear skies and great test results. Landon is a rockstar.
1/14/2020 10:00:43 am
We continue to pray for Landon to get stronger and stay well. Thank you for sharing this journey . Glad you are all back home and you are able to have people taking over your jobs so one of you can stay home. May God give you all the strength and peace each day, we love you Jacqui, Deb, Alice
1/14/2020 10:23:29 am
Jamie, What a very detailed and well written update on your BRAVE boy, Landon. Bet it felt good to put into words all that has happened thus far.....at least that is how writing is to me....most therapeutic.May it be the same for you and Amy who have endured so much thru this very unexpected journey. Heard from Grandma Lucy and Uncle Sean about Landon's homecoming and what a BLESSING that must be!!! Nonetheless, Landon and Family remain in my daily prayers for strength thru all the challenges you face going forward. May God and MANY Guardian Angels Be With You.
1/14/2020 10:27:12 am
So happy your family is all together. We think of you often and continue to pray that Landon beats this beast and feels better every day! You are two terrific parents with so much love.....and that will get you through this! Thanks so much for keeping us updated.
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I'm Landon's daddy. I'm super amazed at how strong and brave he is, and you should be too!