Robbie's Memorial Fund
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I named this Gofund me campaign "Robbie's Recovery" because I truly believe that with God on his side he will do just that.. recover. Robbie is a fighter. He has always been, especially since he was 21 years old. That is when we first heard the words "you have leukemia". At that time he was told he would be lucky to live for another 3-5 years. That was 12 and a half years ago. In these past 12 years he has continued to defy the odds and prove multiple doctors wrong. But it hasn't been easy. Robbie has fought a tough fight. He has spent much of this time in and out of hospitals. Many times being told that his chemo is no longer doing it's job and it's time for a bone marrow transplant.He has been on 5 different types of chemo for CML (the kind of leukemia he has) and 4 of those are oral (pills). We soon found out that Leukemia wasn't the only thing we had to fear. Two years ago he was diagnosed with another type of cancer (side affect of the chemo) that would eventually cause his body to stop producing blood. We were told that he would only live for another six months to a year at most. He had to go for blood transfusions often to make up the blood that his body wasn't producing. After adjusting his dosage he started doing much better. Then about a year ago (August), he started needing transfusions again. He became weak and had a hard time walking. He complained of dizziness and numbness in his left leg (neuropathy). His doctors thought this was also a side effect of the chemo and took him off completely. We were again discussing bone marrow transplant as we were told this is his only option. He has already been on every chemo drug available to treat leukemia and he didn't qualify for any trials. We knew the risks and the survival rate. He decided against the transplant. After stopping the chemo, he started to feel better for a couple of months. In November he was back to not feeling good. His white cells started to climb higher and higher. He had to start back on chemo. He had some good days and some bad since then. I remember on New Years Eve how happy he was to be home because he spent almost every New Years Eve watching the fireworks outside his hospital window since his diagnosis of leukemia over twelve years ago.His bad days started to come more often than the good ones. He still went to work only to be found sleeping on the floor at times. He became weaker and weaker. He started to have high fevers often, muscles craps, tingling down his left leg again, and was in overall pain. Soon he started having seizures After spending February, March, and April in and out of multiple hospitals the doctors discovered a mass in his brain. Worried that his leukemia spread to his brain the doctors decided to do a brain biopsy. Robbie was given a 60% chance of being paralyzed on his left side. My Mom and I sat anxiously in the OR waiting room waiting for some news any news. The doctor came in and said the initial reports show no cancer cells. This lead them to believe it was some type of infection. From being on antibiotics for three months prior to surgery there was no way to tell what kind so they loaded him up on every type of antibiotic, antibacterial, and anti-fungal. He started to improve. He gave himself goals to reach each day. He was determined to walk. And he did!! I took care of him when he was able to come home. He had a picc line in for IV antibiotics that I had to give him. I also had twelve alarms set on my phone for the rest of his medications. He started started to turn around for the better. Soon he was back to work and the football field to watch our children's games. He stopped being dependent on his walker and seemed to have made a full recovery. Until last last week. He was back in the hospital for Father's Day weekend with high fevers. They did an MRI of his brain because of his history but it was clear. They put him on IV fluids and antibiotics and he started to feel better. On Monday he was ready to come home. Tuesday was our daughter's 11th birthday and he was feeling great. Wednesday he started to have a hard time walking and needed his walker. Thursday he stayed in bed all day and they while at my son's football camp, I got a text "I have a 104 fever and I want to go to the hospital". Robbie saying that he WANTS to go to the hospital is serious. I came home to find him delirious, doing very strange things but not talking or responding. That is when our lives had again been turned upside down. He had a seizure in our driveway as I was trying to get him into my truck to bring him to the hospital. When he started to come out of it, he became violent. It took 4 paramedics/firemen to get him onto the gurney and loaded into the ambulance. He had to be sedated. I drove to meet them at the hospital and couldn't go into the room because he wasn't stable. He had an extremely high fever 106.5 and and a very high heart rate of 184. He was heavily sedated through IV. They had him on ice to bring down his fever. He was intubated to help him breathe. They did a head and spinal CT to make sure that he wasn't injured when he fell during the seizure. He was admitted to ICU.
Update Friday, June 24th at 10 am:
Thank you for the prayers. Not much has changed since last night. The good news is that his fever broke so he is no longer on ice or the cooling machine. They turned off sedation for 30 minutes but he did not respond and his vitals became unstable so they turned it back on. They are going to do neurological testing to check his brain activity. His platelets are low. He bit his tongue and cheek when he had his seizure and he
is still bleeding. His doctors here are consulting Moffitt but right now the focus to to keep his stable. I will try to keep posting updates as I get them.
Update on Friday, June 24th at 12:28pm:
He is still sedated. They are saying he has a brain hemorrhage. They have to transfer him to a hospital with a neurosurgery team. They want to move him to Martin North but after what happened the last time he was admitted there, they will be on the bottom of my list just before St. Lucie Medical. I called Moffitt and they denied transfer. Now we are waiting to hear from Lawnwood. Please continue to pray for him.
Update Friday, June 24th at 4:45pm:
Lawnwood accepted him they are waiting for a bed in ICU to open up so he can be transferred. The neurosurgeon from Lawnwood is on his way to see him and ordered another head CT Stat because Robbie is now bleeding from his mouth and nose. They are giving him vitamin K, plasma, and platelets to try to control the bleeding.
Update Friday, June 24th at 8:14pm:
Robbie is still at Tradition until a bed opens at Lawnwood. I talked to the neurosurgeon, he said there is no rush to move him. Even if he needed it, he can't have surgery right now anyway because his blood is not clotting. They tried to wean him off of sedation again with the same results. He is not waking up or having any kind of responses not even to pain stimuli. The doctors believe that he is still having seizures. They are doing an EEG tomorrow. The new CT showed less bleeding is his brain. It is on the opposite side of where the biopsy was done in April so this in not a side effect from that. The neurosurgeon spent two hours talking to me and another 20-30 minutes with my mom. He is very concerned about Robbie. He ordered a DIC (Disseminated intravascular coagulation) blood test to check his organs. We pray that it is negative. Again, keeping him stable is the priority right now.
Update Saturday, June 25th at 7:56am:
He is being transferred to Lawnwood first thing this morning. His stools are now bloody and he is still bleeding from his mouth and nose. They are continuing to give him plasma and platelets to slow the bleeding. The nurse told me the lab results last night but wouldn't tell me if it's DIC without me speaking to a doctor. This morning she is now confirming it. They also tried weaning him off of sedation this time they did pain stimuli similar to what they would do for a coma patient (pressing hard on nail beds with no response and sternum with response similar to the seizure activity that he showed yesterday.) Please Please pray for a miracle!!
Update Saturday, June 25th at 1:59pm:
God is Great. Thank you Pastor Christian for coming here to pray with us and with Robbie. The power of prayer is working! This afternoon the doctor pulled me to the side and told me that he was ordering an EEG because he didn't believe that Robbie had any brain activity and that I should be prepared to bring my kids to say goodbye. Not even an hour later, we were in the room talking to him and the nurse started suctioning the blood out of his mouth when he OPENED HIS EYES!! The doctor came in to check on him and closed his eyelids and we told Robbie to open them again and he did. (He was off sedation at this point). His body then started to tighten and clench with his arms and legs lifting up so they had to give him Ativan and put him back on the sedation. Robbie loves to prove the doctors wrong! He's not giving up this fight. The doctor still ordered the EEG because they believe he is still seizing. An ultra sound of his liver because the blood tests show that it's not functioning and his belly is distended where the liver is located. An MRI of his brain because the CT doesn't give enough information. A lumbar puncture. And more blood work. His INR looked good today from all of the platelets, plasma, and vitamin K that he has been receiving and will continue to. His hemoglobin was low so he will need that as well. As I was typing he opened his eyes again. We thought that he was waking up but he seizing again. They had to raise his sedation. Please continue to lift him up in prayer.
Update Saturday, June 25th at 7:01pm:
The doctor said that his eye movements were a reflex. He is still having seizures regularly. They are changing the type of sedation in hopes that pairing this one with Keppra will help stop his seizing. His kidneys are not working so they did more testing. If he doesn't improve they will place him on dialysis. He is still continuing to swell and is covered in bruises. His doctor (hospitalist) said that he is the most critical patient here. Still waiting on EEG results. The lumbar puncture has to wait until the morning because he needs 2 more units of platelets. They are waiting until after the lumbar puncture to decide about a feeding tube. They won't take him off the ventilator unless his brain activity is gone to see if he can breath on his own. MRI will be done at 8 tonight. Results most likely tomorrow. Please keep praying!
Update Sunday, June 26th at 9:04am:
This morning we were told that Robbie has respiratory failure and low lung volumes. He is breathing rapid and heavy. They are increasing the ventilator today. His platelets are still low, even after receiving two units recently. Because of this, he will not be able to have a lumbar puncture until later today after receiving more platelets. If not, they will try for tomorrow. If he doesn't go for lumbar today then they will start feeding him through a tube in his ventilator. Preliminary results for his EEG show frontal lobe dysfunction and other abnormalities. They are going for MRI this morning. They couldn't do it last night because he needs a team with him (nurse incase his seizes,respiratory for his ventilator, ect.) And they all need to be available at the same time that there is an opening in MRI. His kidneys are still failing. He has very little urine output. They will start dialysis today. His ammonia is also high. Tomorrow they will be inserting a picc line because it is becoming more difficult to draw blood and he won't need to be poked as much. We are bringing the kids up tonight. If anyone would like to see him please let me know. And I will have my mom contact you. Please continue to pray for us.
Update Monday, June 27th at 11:42 am:
Robbie is starting to respond!! I will update with more details later. Please keep praying!!!
Update Monday, June 27th at 2:01pm:
Robbie is a fighter!! He just won't give up. They lowered his sedation this morning and he has become more and more alert. He opens his eyes and turns his head when he hears our voices and even cries. He squeezed my hand earlier when I asked him too. They lowered his ventilator! And he is breathing 13 breaths on his own and the ventilator is breathing 10 for him (it kicks in more if needed). If he continues to do good they will lower it more, then turn if off (only kicking in when needed) , and eventually they will take it out. They said this usually happens quickly. He still has some seizure activity and muscle cramping so they changed his fluids and raised them hoping that more hydration will help. He had his dialysis late last night and he has made a huge turn around. His heart is enlarged but they will continue to monitor it. I have yet to speak to the neurologist and he hasn't updated his notes but I can see the improvement. I told the kids last night and they decided not to come see him yet. Maybe when the ventilator is out they will want to. Thank you for all of the prayers and messages. I'm sorry for not responding to everyone but I will try to keep posting updates as I get them. Please keep praying for Robbie, they are working!!! We love you all!
Update Monday, June 27th at 7:14pm : They did another EEG tonight. I don't have those results yet. One of the neurologists finally came in. Even without going through Robbie's records or seeing either one of his EEGs, he believes that Robbie can pull through this! He knows that Robbie has had a great turn around in the last 24 hours. That is a big difference just from last night! He still has some seizure activity that does not show on the EEG but they are giving him more seizure meds to help control them. He is going to switch some of them with a different type because Robbie is still in renal( kidney) failure and he is worried about the effects. The neurologist is going to do a consult with a doctor that can remove some of Robbie's problem teeth after he is removed from the ventilator.This is something we have been trying to do for sometime now but no dentist would do it because of his cancer and bleeding risks. They raised his sedation again because he was becoming more aware of the tubing (ventilator) and was in visible pain causing him to cough a lot and his heart rate to rise. They will continue to turn of his sedation every shift to make sure that he is still responding. His blood tests still show low plates, hemoglobin, red cells, and other low results. Tomorrow sometime they will start him back on dialysis. The goal is to wean him a little bit more off the ventilator and sedation, continue to get responses from him and to see improvements in his blood work. Thank you for all the prayers and positive thoughts please keep them coming!
Update Tuesday, June 28th at 12:19pm:
It was an amazing feeling to be able to go home last night and give the kids some good news! Robbie is alert and responding. He has a fever but it's not too high they believe it is neurological. He was tachicardic so they gave him meds to bring down his heart rate. His kidneys look worse so they ordered dialysis. They are also going to test him to see how well he is hydrating. He finally had a bowel. But they forgot to send the sample to the lab. His nose and mouth are no longer bleeding. His blood count is still low but they don't plan to transfuse yet. He needs another head CT. They are talking about turning off the ventilator to see what he does (after dialysis). If he does good for a couple of hours they will remove it. Still no results from last night's EEG but he is continuing to improve visually. Now the biggest concern is his kidneys.Thank you all so much for the prayers, please keep them coming!
Update Tuesday, June 28th at 5:29pm:
The ventilator is out! He is completely off sedation. He is doing great!! He's on oxygen and just had a breathing treatment . He had a CT of his mouth (no results yet). They waited on dialysis until after they removed the ventilator, they should be up shortly. Keep praying that he has a good night so I can hopefully bring the kids up tomorrow.
Update Friday, June 24th at 10 am:
Thank you for the prayers. Not much has changed since last night. The good news is that his fever broke so he is no longer on ice or the cooling machine. They turned off sedation for 30 minutes but he did not respond and his vitals became unstable so they turned it back on. They are going to do neurological testing to check his brain activity. His platelets are low. He bit his tongue and cheek when he had his seizure and he
is still bleeding. His doctors here are consulting Moffitt but right now the focus to to keep his stable. I will try to keep posting updates as I get them.
Update on Friday, June 24th at 12:28pm:
He is still sedated. They are saying he has a brain hemorrhage. They have to transfer him to a hospital with a neurosurgery team. They want to move him to Martin North but after what happened the last time he was admitted there, they will be on the bottom of my list just before St. Lucie Medical. I called Moffitt and they denied transfer. Now we are waiting to hear from Lawnwood. Please continue to pray for him.
Update Friday, June 24th at 4:45pm:
Lawnwood accepted him they are waiting for a bed in ICU to open up so he can be transferred. The neurosurgeon from Lawnwood is on his way to see him and ordered another head CT Stat because Robbie is now bleeding from his mouth and nose. They are giving him vitamin K, plasma, and platelets to try to control the bleeding.
Update Friday, June 24th at 8:14pm:
Robbie is still at Tradition until a bed opens at Lawnwood. I talked to the neurosurgeon, he said there is no rush to move him. Even if he needed it, he can't have surgery right now anyway because his blood is not clotting. They tried to wean him off of sedation again with the same results. He is not waking up or having any kind of responses not even to pain stimuli. The doctors believe that he is still having seizures. They are doing an EEG tomorrow. The new CT showed less bleeding is his brain. It is on the opposite side of where the biopsy was done in April so this in not a side effect from that. The neurosurgeon spent two hours talking to me and another 20-30 minutes with my mom. He is very concerned about Robbie. He ordered a DIC (Disseminated intravascular coagulation) blood test to check his organs. We pray that it is negative. Again, keeping him stable is the priority right now.
Update Saturday, June 25th at 7:56am:
He is being transferred to Lawnwood first thing this morning. His stools are now bloody and he is still bleeding from his mouth and nose. They are continuing to give him plasma and platelets to slow the bleeding. The nurse told me the lab results last night but wouldn't tell me if it's DIC without me speaking to a doctor. This morning she is now confirming it. They also tried weaning him off of sedation this time they did pain stimuli similar to what they would do for a coma patient (pressing hard on nail beds with no response and sternum with response similar to the seizure activity that he showed yesterday.) Please Please pray for a miracle!!
Update Saturday, June 25th at 1:59pm:
God is Great. Thank you Pastor Christian for coming here to pray with us and with Robbie. The power of prayer is working! This afternoon the doctor pulled me to the side and told me that he was ordering an EEG because he didn't believe that Robbie had any brain activity and that I should be prepared to bring my kids to say goodbye. Not even an hour later, we were in the room talking to him and the nurse started suctioning the blood out of his mouth when he OPENED HIS EYES!! The doctor came in to check on him and closed his eyelids and we told Robbie to open them again and he did. (He was off sedation at this point). His body then started to tighten and clench with his arms and legs lifting up so they had to give him Ativan and put him back on the sedation. Robbie loves to prove the doctors wrong! He's not giving up this fight. The doctor still ordered the EEG because they believe he is still seizing. An ultra sound of his liver because the blood tests show that it's not functioning and his belly is distended where the liver is located. An MRI of his brain because the CT doesn't give enough information. A lumbar puncture. And more blood work. His INR looked good today from all of the platelets, plasma, and vitamin K that he has been receiving and will continue to. His hemoglobin was low so he will need that as well. As I was typing he opened his eyes again. We thought that he was waking up but he seizing again. They had to raise his sedation. Please continue to lift him up in prayer.
Update Saturday, June 25th at 7:01pm:
The doctor said that his eye movements were a reflex. He is still having seizures regularly. They are changing the type of sedation in hopes that pairing this one with Keppra will help stop his seizing. His kidneys are not working so they did more testing. If he doesn't improve they will place him on dialysis. He is still continuing to swell and is covered in bruises. His doctor (hospitalist) said that he is the most critical patient here. Still waiting on EEG results. The lumbar puncture has to wait until the morning because he needs 2 more units of platelets. They are waiting until after the lumbar puncture to decide about a feeding tube. They won't take him off the ventilator unless his brain activity is gone to see if he can breath on his own. MRI will be done at 8 tonight. Results most likely tomorrow. Please keep praying!
Update Sunday, June 26th at 9:04am:
This morning we were told that Robbie has respiratory failure and low lung volumes. He is breathing rapid and heavy. They are increasing the ventilator today. His platelets are still low, even after receiving two units recently. Because of this, he will not be able to have a lumbar puncture until later today after receiving more platelets. If not, they will try for tomorrow. If he doesn't go for lumbar today then they will start feeding him through a tube in his ventilator. Preliminary results for his EEG show frontal lobe dysfunction and other abnormalities. They are going for MRI this morning. They couldn't do it last night because he needs a team with him (nurse incase his seizes,respiratory for his ventilator, ect.) And they all need to be available at the same time that there is an opening in MRI. His kidneys are still failing. He has very little urine output. They will start dialysis today. His ammonia is also high. Tomorrow they will be inserting a picc line because it is becoming more difficult to draw blood and he won't need to be poked as much. We are bringing the kids up tonight. If anyone would like to see him please let me know. And I will have my mom contact you. Please continue to pray for us.
Update Monday, June 27th at 11:42 am:
Robbie is starting to respond!! I will update with more details later. Please keep praying!!!
Update Monday, June 27th at 2:01pm:
Robbie is a fighter!! He just won't give up. They lowered his sedation this morning and he has become more and more alert. He opens his eyes and turns his head when he hears our voices and even cries. He squeezed my hand earlier when I asked him too. They lowered his ventilator! And he is breathing 13 breaths on his own and the ventilator is breathing 10 for him (it kicks in more if needed). If he continues to do good they will lower it more, then turn if off (only kicking in when needed) , and eventually they will take it out. They said this usually happens quickly. He still has some seizure activity and muscle cramping so they changed his fluids and raised them hoping that more hydration will help. He had his dialysis late last night and he has made a huge turn around. His heart is enlarged but they will continue to monitor it. I have yet to speak to the neurologist and he hasn't updated his notes but I can see the improvement. I told the kids last night and they decided not to come see him yet. Maybe when the ventilator is out they will want to. Thank you for all of the prayers and messages. I'm sorry for not responding to everyone but I will try to keep posting updates as I get them. Please keep praying for Robbie, they are working!!! We love you all!
Update Monday, June 27th at 7:14pm : They did another EEG tonight. I don't have those results yet. One of the neurologists finally came in. Even without going through Robbie's records or seeing either one of his EEGs, he believes that Robbie can pull through this! He knows that Robbie has had a great turn around in the last 24 hours. That is a big difference just from last night! He still has some seizure activity that does not show on the EEG but they are giving him more seizure meds to help control them. He is going to switch some of them with a different type because Robbie is still in renal( kidney) failure and he is worried about the effects. The neurologist is going to do a consult with a doctor that can remove some of Robbie's problem teeth after he is removed from the ventilator.This is something we have been trying to do for sometime now but no dentist would do it because of his cancer and bleeding risks. They raised his sedation again because he was becoming more aware of the tubing (ventilator) and was in visible pain causing him to cough a lot and his heart rate to rise. They will continue to turn of his sedation every shift to make sure that he is still responding. His blood tests still show low plates, hemoglobin, red cells, and other low results. Tomorrow sometime they will start him back on dialysis. The goal is to wean him a little bit more off the ventilator and sedation, continue to get responses from him and to see improvements in his blood work. Thank you for all the prayers and positive thoughts please keep them coming!
Update Tuesday, June 28th at 12:19pm:
It was an amazing feeling to be able to go home last night and give the kids some good news! Robbie is alert and responding. He has a fever but it's not too high they believe it is neurological. He was tachicardic so they gave him meds to bring down his heart rate. His kidneys look worse so they ordered dialysis. They are also going to test him to see how well he is hydrating. He finally had a bowel. But they forgot to send the sample to the lab. His nose and mouth are no longer bleeding. His blood count is still low but they don't plan to transfuse yet. He needs another head CT. They are talking about turning off the ventilator to see what he does (after dialysis). If he does good for a couple of hours they will remove it. Still no results from last night's EEG but he is continuing to improve visually. Now the biggest concern is his kidneys.Thank you all so much for the prayers, please keep them coming!
Update Tuesday, June 28th at 5:29pm:
The ventilator is out! He is completely off sedation. He is doing great!! He's on oxygen and just had a breathing treatment . He had a CT of his mouth (no results yet). They waited on dialysis until after they removed the ventilator, they should be up shortly. Keep praying that he has a good night so I can hopefully bring the kids up tomorrow.
Organizer
Angela Birmingham
Organizer
Port Saint Lucie, FL
