 Mila welcoming her brother home with some kisses! Short post this evening to update everyone on what went down this week at the hospital. I am happy to report that Ali and Mark got home on Friday night about 8pm and we have spent the weekend relaxing, recovering and enjoying all being back together. I posted on Tuesday that Mark had to have another emergency surgery to replace the shunt in his head. They left the catheter out so they could monitor how much spinal fluid was draining. On Tuesday and Wednesday he drained about 600ml which is about double what they expected him to drain. His headaches have subsided and we are seeing a marked improvement every day.  Mark in post-op recovery room after the emergency shunt surgery. On Thursday Mark had another surgery to replace the catheter. They were concerned about infection, so they had to replace the whole line from the top of his head all the way down to his stomach. They reopened an incision that they made in February behind his ear and had to make another incision on his stomach. He has recovered very well and on Friday he had an MRI (previously scheduled) and he was doing well enough to release him to come home. For both Ali and Mark's sanity we were beyond happy they let him come home on Friday. This was our longest hospital stay yet. Didn't expect that when they left on Monday but we are very thankful and hopeful that the new shunt will be effective and keep the headaches away.  External bag used to measure the amount of spinal fluid draining per hour. Since March, Mark has been on an extremely high dose of steroids. We had all but weaned him off when these headaches started coming back. It was just an unfortunate coincidence that the shunt failed at the same time that he was off the steroids. We thought that the headaches were due to him being off the steroids but the headaches were a result of the spinal fluid build-up, not being off the steroids. They did put him back on the steroids while he was in the hospital but at a much lower dose than before. We should have him off again completely by the end of this week!  Quick rest break in between doctor visits. On Saturday Mark slept most of the day. Nobody gets good sleep in the hospital and he was under anesthesia three separate times this week. That takes a huge toll on anyone. We were not concerned because the few times we woke him up to eat or use the bathroom he was lucid, just tired.  Mark resting after second surgery to internalize the drain. Today (Sunday) he slept quite a bit but less than he did on Saturday. Still, just getting over the week from hell. We are seeing improvement each day. A lot to be thankful for tonight as this weekend comes to an end. We are thankful for his team at Texas Children's that they identified what was wrong and got it fixed. Not ideal but it was what needed to happen. We are thankful to all be home and under one roof tonight. We are thankful that his headaches have subsided for the most part. We are thankful for the friends that have reached out and stopped by to say him. We are thankful for a restful weekend and are looking forward to the progress he makes in the week ahead.  Beautiful sunset on the way home Friday night (8/23/24).
Please continue to pray for his strength to return and to make gradual progress each day. Please pray that by the next post I can report that he is off the steroids, completely. Please pray for the strength that God has given this child. I don't know how he does it but every time I think that he cannot be any tougher he just proves me wrong. Thank you everyone for your support and love.
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The majority of this post was written two weeks ago on the plane on our way home from Charleston for Ali’s birthday. I needed to finish, edit and change some things around before posting but I could not bring myself to do it. It has been on my to-do list every day for the last two weeks. At the time, Mark was doing fantastic and I felt that if I posted something and put it out into the world it would jinx all the good we had going on. At the time, Mark had all but come off the steroids, Ali and I had taken a weekend away for the first time this year, just the two of us. Most importantly, Mark had been approved for a clinical trial, the one that we had been praying for since February. Unfortunately, we had a little set back and I am updating this today from Mark’s room at Texas Children’s where he is peacefully sleeping just to my left.  Bryan and Ali in Charleston, SC. Over the last few days Mark had become increasingly and alarming lethargic. We brought him down to the Texas Children’s ER a week ago because of this and they spent all day running tests and doing various imaging to make sure that the shunt in his head was working. From everything they could tell, it was. They sent us home on a higher dose of steroids than he had been at but still quite a bit less than he was at in May and June. We observed him over the week and he just seemed to get more and more tired each day. He was sleeping about 18-20 hours a day; however, he was with it when he was awake. Over this past weekend that changed and he was disoriented and confused in addition to having worsening headaches. This was all too reminiscent of what we went through with him in February. We knew we had to get him to the hospital and we knew that this time they were probably going to admit him.  Jameson and Mark waiting in the ER at Texas Children's Hospital. Ali and Mark drove to Houston on Monday morning and after performing many of the same tests they did about a week earlier, us and the neurosurgeon jointly made the decision to operate to see if the shunt was performing as intended. This is the same neurosurgeon that initially operated on Mark in January. The one that sat with him in the recovery room, watching over him until he handed him over to us. About 6:00 on Monday evening they took Mark back for his third brain surgery in 7 months. Once they started operating, they were able to see that shunt was not draining properly and he had a lot of pressure built up in his head. They removed the shunt that they put in in February and replaced it with a new one that is programmable which will allow them to adjust it as needed. They want to monitor how much spinal fluid is being drained so he has a line coming out of his stomach where the fluid is draining into a bag for them to measure. Before we leave the hospital they will have to perform another surgery to put the drain tube back into his stomach.  Heading to the operating room. The surgery went well and we got up to his room a little after 10pm. He is recovering very well and he did not get sick. There was never a point in time where he was in a lot of pain. This morning we can tell that he is much more himself. While he is still tired (totally expected) he is not in the same amount of pain as he was prior the surgery and he is no longer disoriented and confused. He has even made us promise to get him Taco Bell for lunch today. Today we are just going to watch him and make sure that these symptoms don’t return. We are closely monitoring how much fluid is draining, there is a fine line between draining too much and too little. Hopefully, we will be able to go home in a couple of days. We pray that this new shunt works properly to alleviate the pressure in his head. We pray that he is able to stay on a low enough dosage of the steroids to still be eligible for the clinical trial. We pray that he is not in pain. We pray for all of the continued support from Mark’s Army from the calls and texts to taking care of Jameson on a moment’s notice to going and letting out our dog at 9:30 at night.  Resting peacefully after surgery for shunt on August 18, 2024. ……….. Below is what was written on the plane ride home from Charleston on August 4th. As the summer comes to an end I want to give you all an update on everything that has transpired over the last couple of months and give you an idea of what is in store for our family in the coming months. When all of this started in January this blog was a way of keeping everyone up to date with what was going on and it seemed like there were new developments every day. It is/was a way for us to humbly ask for prayers for Mark, Jameson, Ali and myself. As time progressed and we settled in to our “new normal” it was a lot easier to go about our lives and deal with the day-to-day as it came and not get on here and share everything. I owe it to Mark and I owe it to everyone who is reading this and praying for our family to be more frequent with our posts as we continue on this journey.  Mark and his grandmother, Belinda, in early August. The things that this kid has been through since March are shocking and inspiring at the same time. The radiation took a toll on him that we couldn’t have imagined. No one could. His doctors at Texas Children’s told us that he had the worst case of inflammation they had ever seen. The inflammation caused his eyes to close and we were told by a world renowned pediatric Neuro-oncologist that he would never be able to see again. Consequently, they had him on 16mg of dexamethasone, a necessarily evil steroid. 4mg is considered a high dose. The steroid causes insatiable hunger and at the same time prevents your body from metabolizing food which causes weight gain. He has had double (stacked) vision which prevents him from being able to read, watch TV, build Legos and do any of the things that a 10 year old would love to spend his summer doing. He has literally been through hell and back and he continues to fight. As he was finishing his radiation, I said that he was my hero. He is that and so much more.  Ali's Family Reunion in Blanco, TX at the end of July. Mark’s summer has been spent trying to get back to a place of normalcy. He has been going to physical therapy locally in College Station. Having bimonthly infusions of a chemotherapy drug to help the inflammation, going to see his child psychologist to help deal with the trauma of his life being completely different than it was 6 months ago, being weaned off the steroid and seeing an eye specialist to help his vision improve. All of this just to have some semblance of a quality of life. He is fighting. Hard.  Grandparents, Dan and Jennifer, came to visit from Michigan in July. We get asked all of the time, “what’s next?” That is a completely normal question and a really hard one to answer. There is a medical term called “standard of care” which I had never heard before January. This means the typical course of treatment. With most brain cancers, the standard of care is a craniotomy (brain surgery to remove as much of the tumor as possible) followed by radiation to kill/stunt growth of what is left of the tumor. In Mark’s case surgery was out of the question because of where the tumor is located. We were left with radiation and despite the awful side-effects the radiation worked well to shrink the tumor. On July 12th, Mark had an MRI which showed a visible shrinkage in the size of the tumor, a noticeable reduction in the inflammation and a significant reduction in the size of his ventricle in his brain, all phenomenal news.  Getting ready for MRI on July 12, 2024. The first time we met Dr. Lin, Mark’s pediatric neurooncologist at Texas Children’s, we had just learned of Mark’s tumor. At the time we did not know with certainty if it was cancer or not but all indications pointed to the fact that it probably was. From the onset, he was kind, compassionate and spoke to us in a language that we could understand. We felt like God had put him in Mark’s and our lives for a reason. After the pathology report came back on Mark’s tumor and we met with him at his office we learned that he was conducting a clinical trial, specifically for Mark’s type of cancer. We prayed and prayed that Mark would be healthy enough after radiation to be enrolled in his study. As fate would have it, he wasn’t. Our job was to get Mark better and Mark’s job was to fight . We did and he did and this week we are starting the process of enrolling Mark into his study. There are not a lot of studies being done for this specific type of cancer and even fewer that Mark is qualified to do but God put us in the hands of a doctor close to home that is leading that study. Thank you God.  Mark giving blood in early August was the first step of clinical trial. After we met with the other neurooncologist that told us that Mark would never see again we were in a pretty dark spot. In fact, as we left the hospital that day and I sat and waited for the valet to bring the car around, I sat on the bench and sobbed. A total stranger came up to me and hugged me and told me that as smart as these doctors are “they don’t know everything.” It was what I needed the most in that moment. There are points throughout this journey that will live with me forever and that stranger’s kindness was one of those moments. Mark has overcome the odds to this point and as he as demonstrated over and over again, he will fight. We have prayed from the start that God would light the path for us to make the best decisions for Mark’s care. We have one option as far a clinical trial, I would say that is God lighting the path with a big, bright, flashing neon green sign.  Mark and his friend, Cormac, enjoying a pedicure with their moms. Thank you for your continued prayers and support. We loved showing Mark all of the pictures of your t-shirts and bracelets as you travelled this summer. We will continue to fight, to put one foot in front of the other and just take each day as it comes and trust that God’s plan is being carried out through Mark and this journey we are on. |
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