Stormy Seas Ahead

This is a quick little update on the G-man. When I have been asked how he is doing, I don’t have much to say – “great!” is usually the only word that comes to mind. I’ve jokingly said many times that it’s almost annoying how easy he makes this look. But really, aside from two random non-eventful fevers a while back, we haven’t had any hiccups and have stayed right on schedule the whole time. Home life has been pretty normal – I mean, we are pretty used to a trip to Augusta being part of the weekly plan for years now. He has been sleeping in his own bed, playing like normal, doing his piano lessons, bossing his brothers around…..the usual. We finished up “Interim Maintenance 1” a couple of weeks ago. That was block 3 of 5 of the main part of his treatment. We have two blocks left and then we will enter “Maintenance” which are 12-week cycles until we enter the end date of January 9, 2026. But this one coming up is going to be a doozy. It is called “Delayed Intensification” and it is going to be intense for sure.

This course of treatment will consist of more steroids, harsher chemo, chemo in every modality possible (IV, spinal, oral, and injections we have to do at home). We are to expect low counts the whole time and will have to “keep him in a bubble.” It is likely he will need some blood transfusions during this time and will probably not make counts a time or two and we will have delays. We will have some weeks where we are in twice a week to keep a close check on counts. Lots of nausea and vomiting – and he will lose his hair this time.

As he has been this whole time – he is handling it all with a grace that I only aspire to have. We have explained each and everything that is going to happen so he is well prepared. I have been teaching him to advocate for himself and how to best communicate with the doctors and nurses. It amazes me how much of this he comprehends. I can tell he feels very empowered with being more of a part of the process. Last night he told me that it worked much better when we de-accessed his port while he was still asleep after his spinal and asked if we could do that again. He has also felt so empowered that he has corrected a nurse or two if they skip a step that he has learned is the protocol for certain things [I would insert an emoji with my embarrassed expression here but I don’t know how]. His comprehension is astonishing, but it is a double-edged sword. He is very nervous about his next block. He is upset (and so am I) that we will miss most of his big brothers’ baseball season this year. He doesn’t like the idea of not getting to see his friends. So for the past two weeks, since we had a break and we knew his counts were good, I tried to pack in as much “other people” fun as we could. He has been to baseball games, had play days with his friends, trips to town for ice cream, a pizza party with some special friends we don’t see as much anymore, and spontaneous trips to see his biggest brother in his new apartment. I’ve been stocking up on crafts and fun things to do during our quarantine. I imagine I’ll be cleaning a lot of paintbrushes – painting is his favorite. I know when May gets here, it is going to seem like these 8 weeks (or more) have flown by, but at the moment, it seems daunting for us all.

Specific prayers are pretty much the same – continued healing, lessened side effects, patience, and energy for us all. But as you pray for us, please pray for all of our new friends we have made on this journey. I hate that Gus is having to experience this trial but at the same time, he seems to have it so easy compared to the other small friends we have made. Pray for these children, pray for miracles for the ones who are continuing to have setbacks and get bad news. Pray for the mammas and daddies who are walking this road with us and haven’t had the “privilege” of being seasoned cancer families. Pray for my adult cancer friends going through rough times. As I’ve said so many times – I don’t have survivor’s guilt – I am so so so so thankful to be here still and praise God for the miraculous healing that has happened in my little body time after time over the past 6 years. But the longer I walk this path, the heavier it gets. Cancer doesn’t discriminate. I have shared intimate hard with the most amazing people on the planet – I could write for days of stories of patients and families I have met with. They say I encourage them – but they have each and every one changed me. They soften my heart. They change my perspective. They help me to know what is and what is not important in life. I would have never thought that the place I feel most comfortable now is in oncology rooms. When I first started volunteering with the Leukemia and Lymphoma Society they asked if I would work with pediatric families as well as adults. I was hesitant – I didn’t know if my heart could handle seeing these children suffer. Don’t get me wrong, the suffering is not something I am blind to – but I don’t see that as much as I see their strength in adversity, their kindness, and compassion with each other, their willingness to share and help each other, their spirit is something to behold – it’s magical, and I am oh so privileged to get to behold it week by week. While I don’t want to violate people’s privacy, I do want you to have a list of names – each of these children and adults has carved out a special place in my heart and needs some big prayers – so please, pray for them when you pray for Gus:
Weston – Levi – Cam – Angie – Abby – Cade – Jamie – Herman – Gina
There are more – but these are the ones most recently that are heavy on my heart each day.

Ways to help – as Gus’s taste buds are constantly changing and we know we will be dealing with a lot of nausea, low counts, and need for more calories all at the same time – we are going to be going through even more foods trying to find things he can tolerate and will like. I’ve been buying protein shakes and other things I wouldn’t normally do to boost his calories. With all of the trips back and forth, I am sure there will be a lot of eating out as well. Gift cards for the extra food and travel expenses are always helpful. Gus loves getting mail and fun little surprises, so that is always nice for him. I keep his Amazon list updated (this is my ongoing list for myself, grandparents, etc. for bdays and Christmas) with things he sees and asks for. Here is the link https://www.amazon.com/hz/wishlist/dl/invite/0uY2FHR?ref_=wl_share

We go in on Tuesday morning – March 5 – Thank you all for your prayers, support, texts, and calls. We couldn’t do this without all of you.

much love,
Lesley