All funds will go to the DeBerry’s to help with expenses while Liam fights this cancer

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03/15

March 15 update on Liam: I have not updated in a few days because in the broadest sense, not much has changed from my last one (even as a million details have). His body remains in mild but serious sepsis from his abdominal surgery. The truth is that we genuinely do not know if he will recover and survive the trauma of the surgery, and that answer will be slow in coming. The doctors felt a bit better about his condition yesterday, and a bit better again today, but that is more due to how dire his situation was 48 hours ago than about how much progress he has made, and his overall situation remains extremely grave. It will take multiple days if not weeks to get to a point where we could start feeling confident about his survival. And to be clear, in this update I am really only talking about his short term recovery from the major surgery; all the cancer treatments are on hold and we won’t really have any idea of the longer term implications until later. He is currently still on respiration, and they have given him paralytics to keep him from working to breathe at all. To be clear, this is not a case of him being in a coma, or any sort of fear of loss of neurological function. This is to help ease the state of shock so that his body does not have to actively work to breathe and can focus all its energy on the areas that need healing. If his body can recover from the shock and begin to heal itself there is full expectation that he would be able to breathe on his own and return to lucidity once the anesthetics wear off. I will try to get into a bit more detail now, but honestly there are too many factors for me to cover well, and while this update is going to be a lot, it’s really still going to be an oversimplification. The thing is that septic shock is caused by many factors, and in his case multiple things were/are contributing to it, and the team of doctors can’t be exactly sure which are the most pressing factors nor how to relieve them. The trauma of being cut open and having parts of his intestines removed is a factor (as well as any still healing wounds related to that process). A bacterial infection that resulted from all the gut bacteria leaking into his system was a factor. Fluid building up in parts of his body is a factor. And it is possible there are contributing factors that they haven’t identified, though they are doing daily ultrasounds, echocardiograms, and similar tests. Early on the biggest issue was regulating his blood pressure. The evening of the day after his surgery he had a really scary event where he was reacting in an extreme way to the blood pressure regulators he was receiving causing his blood pressure to plummet, spike, plummet again and then spike to crazy high levels that it slowly came down from. They actually had to call an emergency code that sent everyone running to his room to stabilize him, and he was moments away from needing compressions. I was here for that and did not handle it well to be honest. My stress level bounced between an 8-10 from that point until I was able to go home the next afternoon. The 30 hours or so after that were pretty tense at the hospital as they had to keep adjusting the pressers to keep his BP up, though that is one of the things that has shown the most improvement since then, as his blood pressure is now at a pretty good level with only minimal assistance. The bacterial infection was also a pretty major problem in the early hours after the surgery because he was already on very aggressive antibiotics, so that meant the bacteria was resistant to them and they needed to change the ones they were giving. In the days since then, this is another area that has improved because they used the cultures they grew to determine specifically which antibiotics the bacteria could be killed by, so they were able to take him off some of the most dangerous ones, and more recent cultures have not grown bacteria. Now for the things that are not so good. His kidney function decreased since he has been in sepsis, so he began having liquids pool in areas of his body. One area is around his heart and is affecting his blood flow somewhat. So he went on dialysis yesterday, both to protect his kidneys, but also to work on getting that fluid off his body. The kind of best case hope right now is that relieving that fluid will help with his blood flow and start to decrease those signs of sepsis. One positive here is that his body took to the dialysis very well and there were no major swings in blood pressure as there could have been. One scary thing about his current condition is that nearly everything they do comes with major risks because his health is so precarious. Before putting him on dialysis they had to talk to us about the risks, and that was basically just a collection of various horror stories, so it is good that we did not experience those. Now the long term effectiveness of the dialysis treatment is still in question like everything else. They have already started pulling some of the fluid off his body, but they have to be careful and walk the line between trying to give his heart and other organs more space to work effectively while not pulling it off too fast and create new issues (the most likely being a severe drop in BP from the fluid loss). So the kind of best case scenario hope right now is that relieving that fluid pressure could result in a lowering of those signs of shock. Another troubling sign is that he does have mottling and discoloration in his extremities. This is expected both because the sepsis intentionally redirects blood flow away from the limbs in order to put it all in the places of trauma where the blood is most needed. Also the blood pressure pressers they have been using can cause these issues. Still they are concerned about it and have been running tests to make sure he has appropriate blood flow in case any specific surgical actions would be necessary to make sure blood is flowing properly. The arterial ultrasound showed no major blood clots, which is good, but they are worried about micro-clotting. They are starting plasma transfusions today to attempt to help with this issue, but like everything else, it will take some time to determine the effectiveness of the treatment. They plan to do this for three days, and assess whether to continue it after that time. His actual blood production is still bad, but very slowly improving. This is probably the number one thing that made him such a poor candidate for surgery in the first place. Both because the extensive amounts of tumor in his marrow, and because the chemo that he received throughout the week leading into the surgery specifically attacks the blood creation process. Something I was reminded of recently is that chemo basically attacks any rapidly dividing cells in the body, both good and bad. Burkett’s Lymphoma responds so well to chemo because it is basically always dividing. But blood creation is also a rapidly dividing cell process, so it too is greatly affected by chemo. This is where the need for White Blood Cell donors and infusions come into it. His white blood cell count was zero in the hours following the surgery, and has slowly been climbing up since then. They do not expect these counts to recover rapidly enough, thus the request for donors because that process takes so long. It would be most likely early next week before any donors would be able completely donation process, at which point they would bring them straight over. Ok, that is a lot, but I probably left things out. I hope it was not too overwhelming or confusing. I also hope I didn’t misstate or misrepresent anything, but the doctors claim I have a good understanding of what is happening when I explain back to them what I think they meant after they overwhelm me with all their medical jargon, so I think I got it right. If you do have questions I do not mind you asking, and I will clarify if I know the answer, but please do not be offended if I do not respond right away or at all. A lot is still going on and Facebook especially is not great for showing me comments in order as they happen. Also in terms of future updates, because of the nature of his recovery at this point being so slow, the only things that are likely to happen rapidly are bad, and all the positive steps are going to be very incremental and happen slowly over days or even weeks. So not hearing from us is generally a positive thing, so you should not be worried by a lack in updates. As far as specific prayer requests: 1.) Of course everything related to the medical issues I went through above. The most pressing being that these signs of sepsis start to show significant decrease. It is good that those have not risen, but the longer his body stays in a state of shock, the more dangerous it is for his organs. 2.) For Julia and I as we navigate this all emotionally and spiritually. We need wisdom to love and trust God through all this as so many things are happening, many of which we don’t understand. Also that we have the wisdom to care for ourselves, each other, and our children well. This situation has been so emotionally taxing for us because both being here at the hospital and being away at home causes anxiety and stress. Like the doctors who have been trying to walk a tight line in regards to risky medical decisions, we have had to walk carefully the line of supporting each other and stepping away when we a break from all the commotion of the ICU. 3.) A praise is that Julia’s parents were able to fly down and help us take care of Renée and Aiden during this more tense time. Also our family and friends here have been indispensable in stepping in at the last minute to help us. Because we do continue to care about Renée and Aiden getting the appropriate attention and support they need through this, as Julia’s and my attention turns more towards Liam. So join us in thanking God for the support he has given us through all these people stepping up to help. 4.) Also for the staff at the hospital that they continue to have the wisdom to navigate difficult medical decisions while also dealing with all the various stresses they face. We also hope they can see the love of Christ through us in the way we treat them, even as we are ourselves under great stress.

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03/11

Scary stuff happening this morning, so we need your urgent prayers. Liam was moved to ICU at around 4am because his blood numbers are trending in a bad way. But his platelets and RBC are in a really bad spot for any kind of procedure, including just putting a central line back in to be able to give him the stuff he needs more quickly. They are also worried about potential issues in his abdomen that might result in emergency surgery which would be extremely dangerous for him in his current state, but certain abdominal issues could be even more dangerous so they’ll do it if they have to. Currently they are working to correct some of his blood numbers by giving him blood and platelets to get his body as ready as possible for procedures, then they will intubate him to put him on a breathing machine because his breathing has been a little labored and heart rate has been elevated. His lungs and heart are currently working right on their own, but they don’t want his body to have to work so hard for too long and get into a more dangerous place so they are putting on the breathing so they can keep that from getting worse. Also, he would need to intubated for any procedure then end up doing, so they’re getting ahead of the curve. Once he is on the respirator, they will put a central line back in so they can give him what he needs even more quickly than through the IV. Then they will have more time to run more tests on what is going on in his belly, so they can be the least invasive there as possible. More recent X-rays were less scary than some of the earliest ones that looked as if he might get whisked away to emergency surgery almost immediately. So quick recap: -currently getting blood and platelets -intubation onto ventilator within the next two hours -central line replaced shortly after that -tests to identify abdominal issue (timeframe unclear) -surgical procedure to correct issue (timeframe unclear)

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03/01

Another bacteria culture popped positive for Liam in one of his lines. They’re running more tests to see exactly what it is. He doesn’t have a fever and is in good health overall (like besides the cancer), but depending on the results of those tests this could result in things like his central line (the line in his chest through which he gets the chemo) needing to be removed, treated, and replaced and/or another 10 day run of antibiotics. These aren’t things that put his long term health and treatment plan at risk at this point (his current treatment cycle will be able to continue and complete), but it does create more uncertainty on when or if we’d be able to go home from the hospital. We are now looking at being here through the end of next week at the least and delays like this could bump us right up against his next treatment cycle and mean we wouldn’t be able to go home at all between treatments.

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02/27

(Sort of) update on Liam. We haven’t been updating a ton, because there’s been both too much and too little to really talk about. The whole time we’ve been here he’s constantly being tested for various things (X-rays, CT scans, blood work, urinalysis, etc.) and something is too high or too low so they make adjustments. He’s had 271 tests done over the last 17 days! This is all normal, so it’s not alarming, but it can be wearying as things change day to day. So the start of his first true chemo treatment has been pushed back a couple of times, but today his numbers have looked better than they have at any point during his stay, so they are confident that he will be able to begin treatment tomorrow! Now, chemo, as you probably know, is great for treating cancer but is nasty stuff that’s gonna cause a lot of those numbers they’re constantly checking to get back out of whack. But we are hopeful it won’t be too bad so that he can stay on pace to be able to come home in about a week (and then be home for about two weeks before coming back for his next cycle of treatments). PT and OT have also been working with him to get out of bed and move around more on his own. He’s been very immobile during the last month, so he doesn’t really trust his body to move and kind of freaks out during these sessions, but he is showing progress here even if he still doesn’t think he can do anything on his own. Today he sat upright in his chair for a while and he and I built some Legos together. So our current specific prayer requests are: -that his chemo stays on track, and that the cancer responds well to it without too many side effects on his body -his overall mood has improved somewhat since I last asked for prayer in this area, so I appreciate those prayers, but still asking that he stays strong mentally/spiritually. That he learns to trust his body more and to lean on God for strength. -for Julia, our other kids, and me, as we navigate hospital stays with going back to work and developing a semblance of a regular life routine. That we, too, look to God for strength and comfort, and continue to live out a life of love for God that overflows in love for others. Also, I do want to say thank you again for all of you who have been giving us support in so many ways. I am genuinely not sure how we would be making it through all of this without you all!

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02/22

Mini-Update on Liam - Liam was taken off dialysis and moved out of PICU on Monday That said, they are monitoring all his levels closely and there is a chance he might need to go back on dialysis and into PICU if his kidneys can’t keep up with the tumor breakdown. They are also monitoring a rash he developed on his shoulder today and are giving him antibiotics in case it is a result of an infected catheter. So far he has been on “chemo-light” but if things keep going along well the next few days he will have his first dose of what I’m calling “big guns chemo” on Sunday. Dustin and I are so overwhelmed with the outpouring of love and support from all of you. It is truly humbling. Keep the prayers coming!

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02/17 Update on Liam. There is simply too much to include everything, but this will still be a long post. I know there are so many of you thinking of and praying for him and us, so I wanted to give an update on his diagnosis, treatment plan, and current condition. The tldr version: his diagnosis is scary, but his prognosis is good, even if the road to cure will be difficult. Liam was diagnosed with Burkitt’s Lymphoma/Leukemia, a form of Non-Hodgkin’s Lymphoma with around 250 cases in kids in the U.S. each year. The Leukemia designation is due to the percentage of tumor already in his bone marrow (I always thought leukemia was a type of cancer, but apparently not). They do not know the cause of Burkitt’s, but they do know it is not hereditary. It grows very rapidly, at times doubling in as little as every eight hours, so even though he has only had it in his body an estimated 2-3 weeks, it has already spread to everywhere it could spread except his spinal fluid and brain. Despite how far it has spread, it is treated through chemotherapy only (there are no plans for things like bone marrow transplants, surgical tumor removals, or radiation at this time). They do not use the “stages” you are used to hearing about in cancer cases for kids with this cancer, but instead use risk levels A, B, C1, and C2, with A being the lowest risk and C2 being the highest. Because it has not entered his spinal fluid and brain, he is C1. Most kids who get this cancer, even at the highest risk levels, do survive, but the treatment is intense. Because some treatment has already started, it is unlikely to continue spreading, but he could still be elevated to C2 if the cancer does not respond quickly enough to these current “chemo-light” treatments. Long term, Liam will be treated through six series of chemotherapy treatments occurring in three- or four-week cycles. He must be admitted into the hospital for at least the first week of those treatment cycles, though potential complications could lengthen those stays. A best-case treatment cycle pattern would be something like 1 week in the hospital, 2 at home, 1 week in the hospital, 3 at home, etc. and would involve at least 45 overnight stays in the hospital between now and July. For those "home" weeks he will be in isolation due to being severely immunocompromised. He will be unable to go to school or really much of anywhere else. He will be more or less "normal" during these times at home and won't need bedside healthcare or things like that, but we will have to find a way to provide childcare for him during these times since Julia and I both work. Also our house will be on health and safety protocols very similar to those followed during the height of the COVID-19 pandemic throughout the course of his treatment. He will be able to see people during this time, we are just going to have to be very careful about it all and insist health protocols (masks, constant hand washing, etc.) be followed by anyone coming to visit us. They would like to start his first true treatment cycle this Sunday(ish), so his current hospitalization which began the night of Tuesday, February 7th with the suspected appendicitis, will stretch to at least next Saturday, February 25 or potentially even further. Once they know for sure when his first cycle is starting, they will provide us with a calendar of expected treatment weeks. Currently Liam is in the ICU because he is on temporary Dialysis. This is not because his kidneys have failed, but because some numbers in his bloodwork were trending into territory that could become dangerous for his kidneys, and they want to take the strain from them to keep them working right. He has already begun getting some chemo treatments since they installed his port a few days ago, because it was essential to begin treatment as fast as possible to stop the growth and to see how well the cancer responds to treatment. Chemo works by breaking the cancer cells down which produces waste that the body filters through the kidneys. Because this type of cancer breaks down so rapidly in response to chemo (a great thing!) and because there is already so much of it in is body, it produces too much of this waste too fast for the body to handle, thus the need for short term dialysis. How quickly his body recovers to be able to come off the dialysis will determine when his first true cycle begins. Another thing that’s more difficult to explain well is just how hard this has been on him mentally and emotionally. He has faced nearly two weeks now of various levels of pain and discomfort and just a constant stream of people forcing him to do things he does not want to do. He just wants to be able to come home, and we can’t give him clear answers on when exactly that will happen. Also, the things we have been telling him have often turned out to be completely wrong (for example on last Saturday when we kept being told that he was about to get to go home before a CT scan showed the tumors and started all the craziness). I know this has caused him to feel betrayed at times. So, while our primary concern has been for his physical health in the short term so that he can continue living, we are increasingly concerned about his long term emotional and mental health. So please include that in your prayers for him. I want to again thank everyone for their help and support. So many have helped us in a variety of ways so far and have offered us help in the future. We absolutely need that help and are grateful for it. We also thank God that he has put so many of you in our lives to support us through this. This would be so scary to face if we were attempting to do so alone. So here are a few areas of prayer to focus on for those of you who are joining us in prayer: -For Liam’s spiritual health, that he finds peace, comfort, and strength in God and not become embittered -That his dialysis work well and quickly so he can begin his true chemo treatments as soon as possible and with as little complication as possible (these first two cycles are the most important for the treatments to be successful in curing him) -For his siblings that they get the comfort, attention, and support they need throughout all of this -For Julia and me, that we can take care of ourselves (and that we continue to be cared for by God and all of you) enough to be able to give Liam and his siblings the help and support they need. That we, too, look to God as our source of comfort, hope, and peace, and that we continue to live out His love to others as we struggle through this all.

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02/14

An update on Liam: we got a partial diagnosis that he does have a form of B Cell Lymphoma that is aggressive, advanced, and deadly, but as scary as those words are, it is also very treatable and responsive to chemo.

So even though we are waiting for some information like exactly what sub-type and precisely how far it has spread, they have begun chemo treatments on him today because the start of treatment is the same regardless. This morning, he went under anesthesia to have a port installed in his chest to begin the treatments and will get various treatments incrementally over the next fews days.

We have a couple more weeks in the hospital on this stay as they run this cycle and see how his body reacts, and then he will have weekish long stays every month or so throughout the full treatment plan. Those details we don’t really have yet because we won’t know for sure until they have the info I mentioned earlier.

We were also told that he is going to be severely immunocompromised throughout his treatment process, so he won’t be able to go back to school and will be on home bound. We also will have to be very careful about our own contact with others, and must ask others to be extremely careful when visiting. It’s going to be a major life adjustment for us, but we are excited that he is getting the treatments he needs and thankful to all of you who have been giving us support.

If you want to continue joining us in prayer, we thank God that even though this is all very scary, that we were alerted of it now because even a week later and the prognosis would have been very grim. Also, we are praying that the medicines work and his body be healed. We also thank Him for all of you and the support you have shown us. We also pray to find comfort and strength in Him even as we don’t have all the answers, and we pray that we can continue to live and show His love to all people through this.

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I figure I should give an update about how we got from appendicitis to cancer -

Liam got sick with what we thought was a stomach bug around MLK day. He never fully recovered. He had headaches every night and a low appetite, which we chalked up to both eating too many snacks and just taking a long time to get over the bug. He had low grade fever on and off, as well. Last weekend I thought Liam’s color looked off and that he had lost some weight so Dustin scheduled a doctor appointment for Tuesday.

The pediatrician suspected appendicitis and sent them to the ER. Texas Children’s didn’t think they could get to him fast enough so they went to Texas Women’s who got him in right away. This whole time, Liam’s symptoms did not fit the classic appendicitis profile but it was clearly inflamed on the ultrasound.

During that surgery, he had unusual fluid in his belly and they found a hardened spot on his instestines but the surgeon wanted to get through the appendectomy and recovery first.

Liam didn’t recover well, though. He’s had swelling and fluid build up all over and the headaches had stayed. Still, they discussed releasing him. A different surgeon saw him yesterday morning to clear him but instead was concerned about the swelling and surgery findings. He ordered a CT and that is when they confirmed the mass in his intestines and lesions on one kidney and his liver. They immediately set the plan in motion to get us over to oncology here at Texas Children’s and we were transferred last night.

It is unimaginable that we are here - he was healthy a month ago and we’re pretty devastated right now.

Your prayers, thoughts and love are much needed and appreciated. I’m not one to accept help but we honestly will probably need help. ❤️

Help the DeBerry’s with Medical Expenses

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