Walker Family
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We are so thankful to everyone who has reached out, prayed for us and with us, and offered comfort during this time. I’ve gotten many questions on how this sickness started, what caused it, and what the plan is- I figure the easiest way to share our story is to be as transparent as possible from beginning to where we are now.
Late Friday evening 9/17, we entered the hospital after Trevor was violently vomiting and showing signs of confusion slurring his words.
After bloodwork they discovered that his platelet count was at 7,000. For perspective, a normal platelet count falls between the range of 150,000-400,000. In these moments every diagnosis as to why they were so low was placed on the table from something as small as a vitamin deficiency all the way down the road to cancer. We panicked, felt helpless, and held on tight for more answers.
Around 4am we were admitted to the med-surg floor and waited for more answers. After meeting with several different doctors, the hematologists (blood specialists) were called in to ask for best plans moving forward. He received a CT scan of his brain because they were concerned there was a bleed, but it came back normal, thank God.
A series of bloodwork was taken, around 22 viles, to start to rule out certain disorders and point them in the right direction of a diagnosis. Many different opinions about what was happening in Trevor’s blood were passed around, and tests started rolling in to rule out various disorders.
We met with the hematologist Sunday who did an excellent job of explaining what was happening. After studying his blood, they discovered that something was attacking his platelets. He explained that they were leaning toward a diagnosis of TTP- a rare blood disorder where an inhibitor attacks the cells in your blood and destroys the platelets. Because of the potential risk of Trevor’s condition worsening, the Dr. did not want to wait any longer on treatment and made a plan to start a treatment called plasma exchange/plasmapheresis. This process of this treatment sucks out the bad plasma in his blood out and exchanges it with good plasma simultaneously. With receiving new plasma, his platelet counts could go up.
Sunday afternoon ICU doctors came to his room to place a catheter line in his neck where he would be receiving the plasmapheresis. The bleeding from the line was significant, which was to be expected because of his platelets being so low. Shortly after his first treatment began. During the exchange he had an episode that presented like a stroke, which we later found out can be a part of TTP. It was the scariest thing I ever witnessed in my life, and from here I requested to be present for all treatments in order to monitor him. We were on a general floor where he wasn’t being monitored heavily and nurses (most, not all without a fight) agreed to make this exception.
The following day his platelet count improved to 20,000. It was decided that plasmapheresis would continue. I expressed my concerns about the episode that occurred the day before and Drs explained if it happened again, he would need a CT scan to rule out bleeding. During his treatment another episode occurred, this time at a greater level than the day before. After much panic, it was decided that after receiving his CT scan (which was clear), he would be moved to a unit with heavier monitoring. Despite the episodes, plasmapheresis was working and critical to improve his count.
The following day his count continued to jump, and after several more treatments (luckily with no more episodes), his count reached 132,000. His Drs explained that he needed to hit 150,000 before being considered for discharge. Our chins were up and we were confident one more treatment would do the trick.
The following day (what is time at this point?) his counts dropped to 102,000. Still in a safe range, but not where they wanted. After meeting with the Hematologist, we discussed the final deciding factor in Trevor’s diagnosis- a test that told a % of his ADAMTS13 count. This enzyme works in the blood as scissors. A person with TTP doesn’t have enough ‘scissors’ and sure enough Trevors results came back that he had less than 5%. This placed Trevor into a high risk category of this disorder.
Because of this, the Drs. decided they wanted to add in another treatment to his plan, an immunotherapy called Ratuxin. This treatment is meant to surpress the inhibitor (the bad guys) in his blood so that when receiving plasmapheresis, they would continue to climb and then stay in a safe range. Because of the drop, his hematologist was confident that whatever was attacking his blood was still producing, so the addition of the immunotherapy was the right way to go.
Late Friday night we were transferred to the Oncology unit so that the immunotherapy drug could be administered. After a 6 hour treatment, Trevor was feeling good and we were all confident this was going to bring his numbers right back up and beyond 150,000. Saturday morning his blood was drawn and we faced the unexpected news that his platelets dropped to 32,000.
After speaking with his hematologist, they explained that sometimes these dips can occur, but the immunotherapy drug needed time to work in his system. For this reason, we held off on plasmapheresis for a day to allow it more time to work.
Throughout the evening after blood draws, his counts dropped to 24,000 and then again to 13,000.
Sunday morning it was decided that he needed plasma treatment regardless of the other immunotherapy he received. After his treatment, Trevor expressed that he was still feeling good, and still confident from here the number would start to trend in an upward direction. Drs explained that if the drop continued to happen, there was another drug that could be added to his plan, but not without accessibility challenges with the Pharmacy and insurance. So our plan was to wait. Regardless of numbers this morning, he would be receiving plasmapheresis and also having the cath line exchanged in his neck.
This brings us to today. This morning when Trevor’s blood was drawn, his platelets came back as 8,000. He received his plasma treatment and we continue to hold on to hope that there will be a turn around with his counts. We are waiting to speak to his hematologist today to find out what happens next in his plan.
As we entered this battle, we thought we’d have a quick fix and be getting out of here in no time. We now know we must be patient and that our focus has to stay on getting his counts to a stable place and nothing else. I would be lying to you if I said this wasn’t taking an emotional toll on our family. I’d be lying if I said I wasn’t worried every hour of every day as we wait to hear the next steps we take. But what I do know is Trevor is the strongest man Ive ever met. There isn’t an option to not make it back to full recovery because so many people need him here and he still has so much left to give to the world.
For every one of you who have stepped up, stepped in, sent gifts and food, or simply sent a message with prayers and well wishes- we thank you from the bottom of our hearts.
My incredible Kindergarten Team created this page to help offset the costs that are to come and to support full focus on Trevor’s healing. We are humble people who very rarely ask for help, so that is not the purpose of this post. Anything, and I mean anything you do to keep Trevor in a prayed up and positive place in your daily life, is very much appreciated.
If you’ve made it this far, I thank you for reading and hope that this helps to make a little more sense of what we are going through.
Please hug your families tight, let the little stuff go, and take care of yourselves
Late Friday evening 9/17, we entered the hospital after Trevor was violently vomiting and showing signs of confusion slurring his words.
After bloodwork they discovered that his platelet count was at 7,000. For perspective, a normal platelet count falls between the range of 150,000-400,000. In these moments every diagnosis as to why they were so low was placed on the table from something as small as a vitamin deficiency all the way down the road to cancer. We panicked, felt helpless, and held on tight for more answers.
Around 4am we were admitted to the med-surg floor and waited for more answers. After meeting with several different doctors, the hematologists (blood specialists) were called in to ask for best plans moving forward. He received a CT scan of his brain because they were concerned there was a bleed, but it came back normal, thank God.
A series of bloodwork was taken, around 22 viles, to start to rule out certain disorders and point them in the right direction of a diagnosis. Many different opinions about what was happening in Trevor’s blood were passed around, and tests started rolling in to rule out various disorders.
We met with the hematologist Sunday who did an excellent job of explaining what was happening. After studying his blood, they discovered that something was attacking his platelets. He explained that they were leaning toward a diagnosis of TTP- a rare blood disorder where an inhibitor attacks the cells in your blood and destroys the platelets. Because of the potential risk of Trevor’s condition worsening, the Dr. did not want to wait any longer on treatment and made a plan to start a treatment called plasma exchange/plasmapheresis. This process of this treatment sucks out the bad plasma in his blood out and exchanges it with good plasma simultaneously. With receiving new plasma, his platelet counts could go up.
Sunday afternoon ICU doctors came to his room to place a catheter line in his neck where he would be receiving the plasmapheresis. The bleeding from the line was significant, which was to be expected because of his platelets being so low. Shortly after his first treatment began. During the exchange he had an episode that presented like a stroke, which we later found out can be a part of TTP. It was the scariest thing I ever witnessed in my life, and from here I requested to be present for all treatments in order to monitor him. We were on a general floor where he wasn’t being monitored heavily and nurses (most, not all without a fight) agreed to make this exception.
The following day his platelet count improved to 20,000. It was decided that plasmapheresis would continue. I expressed my concerns about the episode that occurred the day before and Drs explained if it happened again, he would need a CT scan to rule out bleeding. During his treatment another episode occurred, this time at a greater level than the day before. After much panic, it was decided that after receiving his CT scan (which was clear), he would be moved to a unit with heavier monitoring. Despite the episodes, plasmapheresis was working and critical to improve his count.
The following day his count continued to jump, and after several more treatments (luckily with no more episodes), his count reached 132,000. His Drs explained that he needed to hit 150,000 before being considered for discharge. Our chins were up and we were confident one more treatment would do the trick.
The following day (what is time at this point?) his counts dropped to 102,000. Still in a safe range, but not where they wanted. After meeting with the Hematologist, we discussed the final deciding factor in Trevor’s diagnosis- a test that told a % of his ADAMTS13 count. This enzyme works in the blood as scissors. A person with TTP doesn’t have enough ‘scissors’ and sure enough Trevors results came back that he had less than 5%. This placed Trevor into a high risk category of this disorder.
Because of this, the Drs. decided they wanted to add in another treatment to his plan, an immunotherapy called Ratuxin. This treatment is meant to surpress the inhibitor (the bad guys) in his blood so that when receiving plasmapheresis, they would continue to climb and then stay in a safe range. Because of the drop, his hematologist was confident that whatever was attacking his blood was still producing, so the addition of the immunotherapy was the right way to go.
Late Friday night we were transferred to the Oncology unit so that the immunotherapy drug could be administered. After a 6 hour treatment, Trevor was feeling good and we were all confident this was going to bring his numbers right back up and beyond 150,000. Saturday morning his blood was drawn and we faced the unexpected news that his platelets dropped to 32,000.
After speaking with his hematologist, they explained that sometimes these dips can occur, but the immunotherapy drug needed time to work in his system. For this reason, we held off on plasmapheresis for a day to allow it more time to work.
Throughout the evening after blood draws, his counts dropped to 24,000 and then again to 13,000.
Sunday morning it was decided that he needed plasma treatment regardless of the other immunotherapy he received. After his treatment, Trevor expressed that he was still feeling good, and still confident from here the number would start to trend in an upward direction. Drs explained that if the drop continued to happen, there was another drug that could be added to his plan, but not without accessibility challenges with the Pharmacy and insurance. So our plan was to wait. Regardless of numbers this morning, he would be receiving plasmapheresis and also having the cath line exchanged in his neck.
This brings us to today. This morning when Trevor’s blood was drawn, his platelets came back as 8,000. He received his plasma treatment and we continue to hold on to hope that there will be a turn around with his counts. We are waiting to speak to his hematologist today to find out what happens next in his plan.
As we entered this battle, we thought we’d have a quick fix and be getting out of here in no time. We now know we must be patient and that our focus has to stay on getting his counts to a stable place and nothing else. I would be lying to you if I said this wasn’t taking an emotional toll on our family. I’d be lying if I said I wasn’t worried every hour of every day as we wait to hear the next steps we take. But what I do know is Trevor is the strongest man Ive ever met. There isn’t an option to not make it back to full recovery because so many people need him here and he still has so much left to give to the world.
For every one of you who have stepped up, stepped in, sent gifts and food, or simply sent a message with prayers and well wishes- we thank you from the bottom of our hearts.
My incredible Kindergarten Team created this page to help offset the costs that are to come and to support full focus on Trevor’s healing. We are humble people who very rarely ask for help, so that is not the purpose of this post. Anything, and I mean anything you do to keep Trevor in a prayed up and positive place in your daily life, is very much appreciated.
If you’ve made it this far, I thank you for reading and hope that this helps to make a little more sense of what we are going through.
Please hug your families tight, let the little stuff go, and take care of yourselves
Organizer and beneficiary
K Team
Organizer
Kingsville, MD
Katie Dobry
Beneficiary
