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For the last several months we have referred to Mark’s cancer in very broad terms, “the type of cancer Mark has” or “brain cancer”. The reason that we were so vague is because we did not want you to Google ‘Diffuse Midline Glioma’. If you do, you will immediately see things like, average survival is 9-12 months from diagnosis, <1% of chance of 5 year survival, terminal, Grade 4. We did not want to reduce Mark’s disease down to a statistic and we did not want pity. We are at a place now where we are ready to share with you the type of cancer Mark has. Diffuse Midline Glioma (DMG) is aggressive, it is inoperable and it is in a part of the brain that controls, speech, personality, motor function and vision. Simply put, it is the worst of the worst. It is also extremely rare. Only 150 – 300 children are diagnosed each year. It makes me sick to my stomach to look at the numbers and think about how unlikely or unlucky it is to be stricken with this disease.  We always thought that if Mark is rare enough to get this disease, he is rare enough to beat it. We knew that the odds were against us from the beginning but he has always been a special child. It has always been our hope to keep him alive long enough for there to be a drug or a treatment that would be effective in stopping the tumor from progressing. Currently there are no proven options, only trials. Experiments. After the initial diagnosis a patient undergoes radiation with the hope of shrinking the tumor or stunting it’s growth. After radiation some patients enroll in a clinical trial to try and shrink the tumor further. Other’s simply enjoy their time with family until the tumor progresses again. It is not a matter of if the tumor will progress, it is a matter of when. At this point, some patients will undergo radiation again or re-enroll in another trial specifically for “re-occurrence.” This is the best option available, if you are even healthy enough to qualify and that is unacceptable. It felt appropriate to share this now because it is Childhood Cancer Awareness month. It is important that we all come together not just for Mark and for our family but for every child and every family that is diagnosed with cancer. Cancer is the second leading cause of death in children aged 1 to 14 and the number one leading cause of death by disease in children. Childhood cancer is grossly underfunded with only 4% of federal funding for cancer research directed towards childhood cancer. In the past 30 years only seven drugs have been approved by the FDA to treat childhood cancer. In the same time over 200 drugs have been approved for adults. This is not the plan that we had for Mark’s life or our own but it has been thrust into our lives and laid at our feet to do something about. It is a cause that you don’t know you need to get behind until it is too late. We never thought it would be us fighting this fight. We ask all of you, Mark’s Army, to stand with us and beside us as we fight for Mark and every other family and child whose life is forever altered by cancer.
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The last 7 days have been the most emotionally exhausting days since January when we first learned of Mark’s diagnosis. We have been in the hospital since Monday afternoon. While he has improved considerably since we have been here, it is gut-wrenching to see him in this condition. So, how did we get here, again?  Mark seemed to be doing well just a few days ago on August 30, 2024. There is not a cure or a ‘standard of care’ treatment for the type of cancer that Mark has. When we first learned of his diagnosis we vowed that we would do whatever we had to do to prolong his life until a treatment is available. We have prayed/begged that we can turn this prognosis in to a chronic illness that always has to be managed but that we can live with. Our only hope is a clinical trial. The trial that Mark is approved to do requires him to be in good physical health and on much lower dose of steroids than Mark has been on over the last several months.  Ali and Mark at home, getting sleepier and having trouble keeping left eye open. Since April we have been working to get him off steroids. We get close and his condition worsens or his shunt fails or any other host of issues causes us to have to go back up on his dosage only to have to start the weaning process over. The steroids change his personality, they cause insatiable hunger, they alter his sleeping patterns, they wreak havoc on his hormones and cause a handful of other issues. However, they also reduce inflammation in his brain. They are a necessary evil. When the inflammation is in your brain it affects every function of your body and if left unchecked it can be fatal. Mark’s inflammation is from the trauma that his brain has been through since January. The tumor, the build-up of spinal fluid, the shunt, the radiation, the cranial pressure, the new shunt, etc. The steroids are the only way to combat this inflammation of the brain. The problem is that there is not a dosage schedule. It is 100% a guessing game to figure out how much the dosage can be reduced and to find where the happy medium is. You reduce the dosage, wait a couple of days, see how he is doing and if he is doing okay you reduce again with the goal of getting completely off.  Mila has been keeping a very close eye on her brother Mark. After Mark’s surgery on August 18th to replace his shunt, the doctors increased his steroids back to a high dosage but wanted us to quickly reduce them. We were able to wean him off pretty quickly and on August 29th he took, what we hoped, was his last dose of Dexamethasone (a name that we have grown to hate). Again, we were shocked at how quickly he had bounced back after this latest surgery. He was getting around the house on his own and regaining some of his independence. After a couple of days off the steroid we were starting to see signs of our Sweet Mark. He was wanting to be around us more, his mood had improved, he didn’t have the appetite, his sense of humor was starting to show up here and there. Everything was going well until it wasn’t. Around the middle of last week he started having trouble walking and he became a fall risk. We were using the wheelchair around the house, something we hadn’t really done before. We knew that coming off the steroids there would be a period of time when he was in transition before his body would naturally start producing the hormones that the steroid was suppressing. He wasn’t in pain and he was still lucid (unlike when the the shunt was failing). Seemingly over night, he lost his ability to speak, he had Parkinson’s-like tremors over his whole body and for the most part was unable to eat or swallow. We were scheduled to go to Houston on Monday for a neurologist follow-up appointment and to get his stitches out. We knew that he would be admitted to the hospital. There is nothing in the world that can prepare you to see your child like this and I pray that you never will.  Admitted to the hospital on the oncology floor for observation. When we got to the hospital they were moving much faster getting him admitted, hooked up to IV’s and to the imaging room for the MRI than they ever had before. They were trying to determine if he had/was having a stroke because he could not move his right arm. The symptoms that he was having were either him having a stroke, a result of the shunt failing again, the tumor enlarging and affecting the part of the brain that controls these motor skills or it was inflammation. They quickly ruled out shunt failure and the stroke. The imaging from the MRI looked to be pretty stable from the one he had in August, so most likely not tumor progression. They had to get him back on a high dose of steroids to see if it was the inflammation causing this. They did and almost immediately we started to see subtle signs of improvement. Things that only Ali or I would notice.  Our superhero had Iron Man painted on his hospital room window. Once they got him to his room late on Monday evening, his temperature starting going up and they were worried about a blood infection. Of course they were. We have learned that if it can go wrong, it will when it comes to this entire journey. They had to take quite a bit of blood and send it off to the lab to determine if it was a blood infection. Fortunately, it wasn’t but we didn’t find out until late on Tuesday that was pretty much ruled out.  Ali calming Mark after midnight so that he could get some sleep. Tuesday was spent resting, letting the steroids work their way through his system and getting better. We had visits from PT, OT and did a lot of heavy lifting to get Mark in and out of bed, to the bathroom, etc. His buddy, Crosby, the yellow lab that he befriended in January came by to see him for awhile and they even got a little nap in. Our sweet friend drive the 2 hours from College Station just to give us a hug. It worked out that she could stay longer than that and we really enjoyed her company while Mark rested. Thank you N! By the end of Tuesday, he was able to talk and move his legs enough to help us help him get in and out of bed. Last night his oncologist, Dr. Lin, came by our room and met with Ali and I for an hour. He has such a calming presence and he reassured us that Mark can still be on the steroid and do the trial but he does need to improve physically. That is such a relief. Wednesday morning started with a normal breakfast. He had been on the mush diet since we got here, not exactly appetizing. He was speaking in complete sentences, while labored, it was a vast improvement. He walked, with our help, to the restroom. All of this was a complete 180 from where he was just 48 hours before. There is a chance that they may even release him today after he meets with PT and OT again. A little while ago Crosby came back by for a visit and Mark and Crosby made a picture that I dubbed “Bark’s Army”.  Mark and Crosby making a canvas with their “hand” prints. We are hopeful that he will improve a great deal over the course of the next week and continue to get stronger and heal so that he can do the trial. Ali and I are at peace with the steroids. Perhaps this was God’s way of showing us that the steroids are just going to be a part of our lives and we need to do what we need to accommodate the changes that they cause. We pray that we are able to find the happy-medium with his steroids that allows him to function normally but without the extreme side effects. We pray for Jameson continuing to be so adaptable to the abrupt changes in our lives. We pray for our friends and for all of the shoulders we have cried on over the last week. We pray for Mark to have the will to keep fighting this fight. We pray that we catch a break. Most of all, we pray that Mark is going to go home. There was a thought when we left the house on Monday that may not be the case. Thank you for your continued love, prayers and support. We need all of them. |
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