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Click here to go back to the main page. Thursday, February 15, 2007 8:35 PM CST This morning Mark tried to join with God. He is now a NO CODE, and Father Malley has given him his Last Rites. This will be a long night. Tuesday, February 13, 2007 8:38 PM CST Our hearts are broken. Since last Thursday there has been no improvement just lower saturations and increasing the vent settings and oxygen. Monday they started a med that is still in clinical trials, nothing published on it yet. Saturday, February 10, 2007 10:49 AM CST Baby steps forward and giant steps back. Day after day and through the night Marks slips away. They increase this, increase that, give blood and at this moment just barely 89 Oxygen saturation. Our faith is strong. We believe that God has a plan. Thursday, February 8, 2007 10:16 AM CST Since the last entry, another fever, another infection found. He is still on the occillating vent with blended Nitric gas. Still paralyzed with continuous sedation and pain meds infusing along with some many more meds. There is the reducing of airway pressure, when it is low enough, they will place him back on a conventional vent. We, his parents, have been there with him day and night since his admission Sunday December 17th. There is no loss of hope. We're exhausted but know that he is going through much more than us. We continue our prayers for him and nothing else. Tuesday, February 6, 2007 3:37 AM CST The past 24 hours have been better. Stable and a little less Oxygen used. We continue to pray for recovery. Sunday, February 4, 2007 6:27 AM CST Mark has been stable almost 48 hours now. We remain hopefull and thankfull that God has given us more time. So many tests still pending, one drug not yet used. Only 31 children have had it with 25% survival, more hope for recovery. Friday, February 2, 2007 7:34 AM CST Mark survived the night. They worked on him for an hour last night. His sats dropped, his pressure dropped. This morning his left lung collapsted and they just placed another chest tube. He is living hour to hour. In God we trust. Wednesday, January 31, 2007 8:08 PM CST Again today the oxygen is increased along with the airway pressure. He is still paralyzed and medicated for pain and sedation. We pray to God that he is not in pain or aware of everything.
Monday, January 29, 2007 8:33 PM CST Mark is still with us. The settings on the vent go up, the pain med goes up, his fevers persist. His lungs are not getting better. Saturday, January 27, 2007 9:13 PM CST Marks lungs are failing to oxygenate. They just placed him on the occillating vent. It will be a long night. Friday, January 26, 2007 11:13 AM CST Mark has been stable for the last 24 hours. The occillating vent is outside the door. All of the cultures are still pending. He is on anti-biotics/anti-Virals/anti-fungals, the daily fevers are back. We don't know what it is in his lungs yet. The paralyzing,pain and sedation infusions continue. Another unit of blood is running in now. Even though Mondays CMV virus result was below 600, no growth, that is blood and it could still be in the lungs. We thank God for another day and for all of those helping us with your prayers. Wednesday, January 24, 2007 8:11 PM CST Marks lungs have gotten worse. The lungs are ventilating but not oxygenating. They paralyzed (continuous) him and are giving him sedation and pain meds continuously. The occillating vent is in the room, it will be hour by hour tonight. Sunday, January 21, 2007 5:36 PM CST Mark has had another set back. Since the virus and staph infections came his respitory status has gone down hill. They just added the Nitric gas blended into the vent support. Hours ago, he awoke crying and reaching out to us (mom and dad) Father Malley arrived and together with a visiting mom, we prayed for him. Saturday, January 20, 2007 9:09 AM CST Marks fever and diarhea are back. First they found a bacterial Staph infection in his arterial line, then the CVM virus again. He is still off of the continuous dialysis and they weaned him off of the Nitric gas. The methadone and Ativan are reduced so he can spend more time awake and move more. They examined his eyes last night looking for the virus, not there, just unable to focus completely because of the meds. He is still intubated and on the vent. Thank you God for another day. Thursday, January 18, 2007 10:54 AM CST Mark is stable. Still on the vent with blended gas. They are trying to wean him off the gas. He made it another day without dialysis, the output is close to balanced and the labs indicate the function is improving. This is good news, it will still be awhile but he is going in the right direction. Wednesday, January 17, 2007 12:39 AM CST Mark remains stable. He is at a crossroad. The continuous dialysis was stopped yesterday as were the IV pain and sedation medications. The idea is to wake up the kidney, he has to put out same as goes in and filter (based on labs). If it doesn't then conventional dialysis will start. They started Methadone and Ativan down his feeding tube, but he is going through withrawals. They have not been successful in getting him off of the vent. That continues with the blended Nitric gas. And so much more going on. We thank God for everyday we have with our son. Monday, January 15, 2007 10:18 PM CST I can only say that Mark is stable after his surgery on Sunday. Having our pastor visit tonight reminded me of the way I want to remember the way things were. Please continue to pray for his recovery. Saturday, January 13, 2007 11:31 PM CST Mark is bleeding from his lungs and bladder. They are starting a new dialysis site in a few minutes. He will go to the OR this morning again. They just paralyzed him again. We thank God for the day we had and hope for another.
Saturday, January 13, 2007 7:14 AM CST We thank God that Mark is still with us. After his lung collapse (now re-inflated)12 hours passed and he essentially coded. His heart rate dropped, he was not getting any oxygen they were bagging with 100% O2 and chest compression were started. They worked on him for almost an hour before a plug (large, hard clot was removed from his lungs). Since that time, he has been stable. He is on a conventional vent now with the blended Nitric gas, the continuous dialysis but no longer paralyzed. We pray for his recovery. Thursday, January 11, 2007 4:59 AM CST Mark is still with us. He is still on the occillating vent with Nitric gas, continuous blood dialysis, and so many meds. When we think he is stable and hope for progress things happen, yesterday they started him on an Insulin drip, and in the middle of the night his right lung colasped. A chest tube was inserted to re inflate the lung. Please pray to God that he moves forward and not backward. Tuesday, January 9, 2007 3:06 PM CST Marks condition has not changed, same equipment helping him. The fever is gone, the remaining virus is almost gone. His lungs will need time to recover as well as his kidney. Sunday, January 7, 2007 6:00 AM CST The fever is still gone, the bacteria in the blood is gone, one virus in the lung is gone. The CMV virus is still there but dropping. Attempts were made yesterday to get GI tract going and lungs. By the end of the day both had failed. Friday, January 5, 2007 12:28 AM CST One virus is gone, we are waiting for todays lab in regards to the other virus. Mark is still on the occilating vent with blended Nitric gas, continuous hemodialysis, paralyzed, sedated and given pain meds besides countless other medications. Wednesday, January 3, 2007 11:06 AM CST Marks fever broke,first time since admission. Both viruses in the lungs had lower levels, his diarrhea is almost gone. They placed him on continuous dialysis yesterday, trying to help his one kidney. He is still on the occilating vent with the blended Nitric gas. They are keeping him paralyzed, pain free and sedated. We have more hope than we did 24 hours ago. Please continue to pray. Tuesday, January 2, 2007 12:16 AM CST Another horror of a night and morning. Overnight the vent support was not helping, they blended in Nitric gas an hour later they placed him on an occillating vent with the blended gas. His heart is failing him, heart rate 170-220, pressure up/down meds added to control it all. This morning his one kidney is failing, the doctors want us to prepare for kidney dialysis. He is paralyzided (sp),sedated and given continuous pain meds. Monday, January 1, 2007 11:18 AM CST Another bad night, his condition is worsening, they asked if everyone that means anything to him has been in to visit. What does that mean? My heart is broken. Please Pray. Sunday, December 31, 2006 1:49 PM CST Marks condition is critical. Still on a vent, fevers going higher 105, diarrhea. Nothing is working. Please pray. Friday, December 29, 2006 11:08 AM CST Mark is still in PICU fighting. He is still on the breathing machine, IV food (TPN), countless meds. The fever has never gone away greater than 104 at times, diarrhea continues. Please continue to pray. Wednesday, December 27, 2006 7:19 AM CST Mark is still in PICU fighting. They are doing everything that can be done. It is up to GOD. Sunday, December 24, 2006 4:28 PM CST MARK HAD A BAD NIGHT, AN EMERGENCY TRIP TO THE OR, HE IS INTUBATED ON A VENTILATOR IN PICU, THEY ARE DOING EVERYTHING POSSIBLE. IT IS HOUR TO HOUR. Saturday, December 23, 2006 10:23 AM CST Day 51 post transplant day 6 in hospital. We got answers to tests yesterday. It was not pleasant to hear the doctor say they needed to sit down with us for a meeting.
Friday, December 22, 2006 6:25 AM CST Day 50 post transplant day 5 in the hospital. The fever is still spiking over 102 after 5 days of anti-biotics and anti-fungals. Diarrhea and vomiting persist. Yesterdays trip to the OR showed pictures that indicate GVHD but the pathology report is pending. A cough has developed this week here in the hospital and Mark may go for a CT of head and chest, the chest x-ray was clear. We will set up a small tree and decorate on Saturday. It appears he is will be here thru the holiday. Thursday, December 21, 2006 6:30 AM CST Day 49 post transplant day 4 in the hospital. There was not much sleep again last night. Even though Mark has had nothing in his stomach since Sunday (that stayed down) he needed a bowel prep (even with the diarrhea). His fever persisted until around 4am and is close to normal now. Hopefully the meds are working and he will not spike again. The rash is there but comes and goes now. No vomiting since last evening. He is scheduled for the OR (under anesthesia) at 1PM today for his upper and lower endoscopy with biopsies. Mom and grand-mother, both plan to be here with us for the procedure. If the samples show GVHD (graph versus host disease) IV steroids will be started and Mark will not be home for Christmas. He doesn't know this yet. He thinks because he is currently fever free, he will go home tomorrow. Pathology should give us a report on Friday sometime.
Wednesday, December 20, 2006 6:20 AM CST Day 48 post transplant, day 3 in hospital. Yesterday, Mark kept nothing down. The fever persist even at this hour and the diarrhea continues. There was not much sleep last night. Based on a culture on admission Sunday gram coccii were found in his blood and more antibiotics were started. He is not looking well. More tests are pending and the doctors will make a decision soon about scoping him in regards to the vomiting and diarrhea. What cheered him up during the day was a moment when football players from the "Bucs" stopped in front of his door and through the window, smiled and waved. And a visit from his grand-mother.
Tuesday, December 19, 2006 6:01 AM CST Day 47 post transplant 2nd in the hospital again. As of this moment Marks fever has not come down, it is >101, so far the lab work is negative but not all test results are back. He is vomiting and has diarrhea and fever with no complaint of pain. He is very worried about missing Santa. We're worried that things are more wrong than what we know.
Monday, December 18, 2006 6:30 AM CST Day 46 post transplant. It was a long night. Mark spiked a temp 102 and we took him to ACH. He wasn't in a room until 2am and done with doctors an hour after that. The rash is almost non visible, No vomiting, No complaint of pain, just the fever. Enough alone to get admitted. Same room 271. He cried at home and on the drive in. He is worried that Santa will not be able to find him. HE STILL BELIEVES. We assured him that no matter where he is Santa knows and that helped settle him down. We had just pulled out of the driveway and he said "you know nanny, she wants me to call and tell her" and he did. That was near midnight. Sunday, December 17, 2006 5:52 PM CST Day 45 post transplant. The rash is almost all gone. Mark still has no apetite but no vomiting. No pain, No fever. Today he did some school work and took a walk outside with mom. That was alot for him. We need for him to drink protein shakes if he can't eat. Those are offered throughout the day.
Saturday, December 16, 2006 12:32 AM CST Day 44 post transplant. We are so happy. The rash is almost gone. No fever, No pain and No vomiting. We measure our day by the good things. Grand-parents visited and left already. Lunch is being made. Mom did her grocery shopping and I made it out for the other errands. After lunch the plan is a nap. That sounds great after everything going on. Friday, December 15, 2006 3:42 PM CST Day 43 post transplant. What a difference a day makes. No vomiting today, No pain, No fever and the rash has lightened up and is smoothing out. He still doesn't have much of an apetite but is looking forward to eating homemade pizza this evening. Grandpa just left and we're waiting for mom to come home from work. Tonight is family movie night. Thursday, December 14, 2006 3:30 PM CST Day 42 post transplant. It was an early night to bed for all of us. The rash is looking better, baths and lotion continue. Within an hour of wakeing up this morning, Mark was vomiting. Still no apetite, No fever, No pain. He had visits from both grand-parents today and is doing school work at the table now.
Wednesday, December 13, 2006 3:47 PM CST Day 41 post transplant. Mark is still vomiting at least once a day. He has no apetite. The rash is looking better and I just got off the phone with the NP at the clinic. They will call again tomorrow, if rash persist they want the skin biopsy on Friday. No pain, No fever. No school work today because I don't feel well and need to keep some distance from him. Tuesday, December 12, 2006 3:07 PM CST Day 40 post transplant. Monday, December 11, 2006 3:31 PM CST Day 39 post transplant. Yesterday the rash looked better until the evening and this morning worse. From the top of his head down to behind his knees. At clinic today the doctor doesn't know what it is. It does not look like donor rejection, so there was more lab work than usual. If worse in AM, he will go back to clinic for a skin biopsy. The vomiting continued today and we were told to add supplements to his drinks because of weight loss. Just when we were trying to get the Christmas spirit. Sunday, December 10, 2006 9:16 AM CST Day 38 post transplant. Marks rash is looking better. No pain, No vomiting (but nausea persist), No fever. We have an artificial tree, up and lit. My wife and I took time out and made a trip to the toy store. Again our thanks goes out to Joe and the foundation.
Friday, December 8, 2006 11:53 AM CST Day 37 post transplant. Mark had a good night. The rash is no worst. No pain, No fever, No vomiting. We was asking about decorating the house, hopefully on Sunday. Tonight, he is looking forward to pizza for dinner and our family movie night. Thursday, December 7, 2006 11:52 AM CST Day 36 post transplant. Mark had a low grade fever again yesterday, never above 99.9.... No pain, No vomiting, the rash is spreading. This morning he went to clinic. The labs are still improving. The bone marrow biopsy report is now complete. NO CANCER AND NORMAL GENETICS. We have reason to thank God and celebrate today. We will try a new cream today for that rash. Wednesday, December 6, 2006 9:37 AM CST Day 35 post transplant. Yesterday, Mark teetered most of day with a temp of 100, if it went to 100.5 it would have been a trip back into the hospital. The rash is no better. No pain, No vomiting and he is walking around with less of a limp. One of his doctors called and changed the dose on one of his meds, based on Mondays lab results. Thursday, tomorrow, will be another clinic day at ACH. Lab work and doctors visit. While there we need to pick-up more medicine at the drug store. Tuesday, December 5, 2006 6:09 AM CST Day 34 post transplant. I never expected to spend six hours out of the house yesterday for clinic but we did. We left the house at 8:30 (vomiting on the way in the car) and returned close to 2:30. Mark had his visit, labs, IV meds, dressing change. He had a good night. No more vomiting, No fever, No complaint of pain. We are so glad to have him home.
Monday, December 4, 2006 2:31 PM CST Day 33 post transplant. The turkey was delicious. Mark ate like a champ. We had a family movie night and slept good. Felt bad for the BUCs again. Sunday, December 3, 2006 1:40 PM CST Day 32 post transplant. Mark developed a rash yesterday. No fever, No vomiting. The doctor was called and Pam had to run to drug store for a new cream. His walking is improving. Saturday, December 2, 2006 10:17 AM CST Day 31 post transplant. Friday, December 1, 2006 6:43 AM CST Day 30 post trasnplant. I never made it out of the house yesterday. Neither visit by grand-parents was long enough to do anything. After the clinic, I received a call from the doctor. He changed the dose on one of the meds based on a lab result. Mark had some nausea but no vomiting in the evening and the fever still stays below a 100. Today, he needs to spend more time on his feet, walking. The doctor said it may take up to a month to regain his strength. He also needs to do some school work. Related to his health and physical condition, sleeping in his elevated bed has been out of the question. We have him sleeping on an air bed just outside of our bedroom door. Thursday, November 30, 2006 11:23 AM CST Day 29 post transplant. Yesterday, Mark complained alot about his calves. He is noticeably limping. He had a good day until just after his 9pm meds and gave it all back. We placed a call to the doctor, he was also running a temp of 99.8......We waited a while and fever came down, the meds were all given again.
Wednesday, November 29, 2006 6:19 AM CST Day 28. Yesterday morning Mark was NPO for his bone marrow aspiration and biopsy under anesthesia. He had No fever, NO vomiting, NO pain and his ANC was over 500. Prescriptions were called in but not ready until after 5PM. As soon as all were in my possession the discharge took place. Mark has come home. His first meal requested was chicken strips breaded and cooked in the fry-o-lator, chicken noodles and peas, all washed down with bottled water and a glass of eggnog. There are 14 meds on his list to take the schedule looks like this, 6am, 8am, 9am,12noon, 1pm, 2pm, 5pm, 6pm, 8pm, 9pm, 12midnight. But he is home. Today he will walk around the house, do a little school work, eat. He is currently sitting eating mac & cheese with a glass of eggnog, what a breakfast. His biggest concern is what to eat for lunch and dinner.
Tuesday, November 28, 2006 6:40 AM CST Day 36 or 27 post transplant. It is up to God if we go home today. He had a good day and night yesterday. NO pain NO fever NO vomiting, stools are forming. His morning labs are back, his ANC is over 500, there is no need for blood or platelets. He has been NPO since midnight, his scheduled time in the OR is 1045 but we are still waiting to see the anesthesiologist. Monday, November 27, 2006 7:31 AM CST Day 35 or 26 post transplant. Mark had a good night but awoke this morning vomiting and later diarhea. No fever, No pain, up in a chair now with breakfast bar and juice but not eating. No need for transfusions today but ANC is below 500. Today, there should be some discharge planning and possibly a walk in the hallway (with a mask and if no one is there)to strengthen his legs. Sunday, November 26, 2006 6:33 AM CST Day 34 or 25 post transplant. Good news. Mark had a good night, NO pain, No fever, No vomiting, stool last night is improved. This mornings lab work shows no need for any transfusion and an ANC over 500. All of his school work is done except for finishing his report on China (almost done that) so today will be a day of rest. Saturday, November 25, 2006 7:10 AM CST Day 33 or 24 post transplant. Mark had a night pain free, NO fever, rash has lessened, No vomiting, No diarhea as of yet. His morning lab work looks good. No blood or platelet transfusions needed, so no sleepy meds today. His ANC is looking better everyday. He is awake, smiling and working at breakfast. Our hopes are high today.
Friday, November 24, 2006 8:25 AM CST Day 32 or 23 post transplant. Yesterday, Mark received two units of blood. He was on TV10 around 6:10 pm. Twice during the night he compained of pain. No fever, No vomiting, he ate and drank well. The expanding rash and diarhea may be a sign of GVHD Stage 2, donor rejection.
Thursday, November 23, 2006 9:27 AM CST Day 31 or 22 post transplant. HAPPY THANKSGIVING. Mark had a night without pain, fever or vomiting. The rash and itching continues, now they say it may be graph/host issue. Wednesday, November 22, 2006 6:41 AM CST Day 30 or 21 post transplant. Yesterday, Mark started the day vomiting. Most of his body was covered with an itchy rash. Normal,he is producing his own cells, this is good. Because he has meds to control vomiting and rash, he was given the day off, NO school work. He did have PT and music therapy. Tuesday, November 21, 2006 6:20 AM CST Day 29 or 20 post transplant. God is with us. Last night around 7Pm Marks' transplant doctor spoke with us. He is happy at Marks' progress, only two out of ten do so well. Then a list of IFs, IF there is no fever, no pain, an improved white count with an ANC greater than 500. IF he can take all of his meds by mouth and can go more than two days without a transfusion we may go home a week from now. Much earlier than the December 15th date we were shooting for. Pam has to organize a cleaning of the house before we can bring him home. She will be asking people to help. Calls to air conditioning (clean duct work, vents), rug cleaners (including furniture), there are cracks in our ceilings (don't think we can get to that)with the holiday this week it all seems impossible. Monday, November 20, 2006 6:37 AM CST Day 28 or 19 post transplant. Yesterday, I tried four seperate times to update and could not, site or access issues. Mark received more platelets yesterday and had an episode of nausea. NO pain, No vomiting, No fever. Nanny came for a visit and he sat up in a chair for hours in the morning. Some of that time was doing school work. He had a fair night, waking up often disturbed by pumps alarming but only once out of bed. His hgb is low today and he will probably receive a blood transfusion. To answer those that have asked, yes you can call the room 727-767-2271. He would like to hear from his friends.
Saturday, November 18, 2006 8:42 AM CST Day 26 or 17 post transplant. NO pain last night but vomiting before bed. He was only up twice during the night and this morning his stool (excuse me) actually is forming No diarhea. He is stitting in a chair already and working at eating. We have been diligent with his mouth care and glutamine ( prevents GI tract problems, erosion and bleeding) intake three times a day. NO signs of rejection. Yesterday, the labs were good enough to actually do a differential and come up with an ANC. This morning it improved more and the ANC is higher. We are thrilled, actual signs of improvement. God is with us and has answered all of the prayers given to him. Our excitement is tempered only by the possibility or problems. Friday, November 17, 2006 7:56 AM CST Day 25 or 16 post transplant. Yesterday, Mark did receive the platelet transfusion. Because of the pre-meds, he slept through it and did not get out of bed until 1:30pm. Thursday, November 16, 2006 6:24 AM CST Day 24 or 15 post transplant. Yesterday, Mark ate a few bites of food with all three meals, drank well. Good signs, helps prevent problems and feeding tube. He had OT and a visit from Dominic from our Church. He also sat in the chair for a bit of school work. It was around 5pm we made the room change, again he is back in room 271, the restricted bone marrow area of oncology patients. Now to re-decorate with his posters, cards and pictures. Overnight there was one linen change but NO pain, No fever, No vomiting. He is still sleeping. The morning lab work indicates a need for a platelet transfusion.
Wednesday, November 15, 2006 9:05 AM CST Day 23 or 14. Except for a little nausea last night it was a good one. Fewer interuptions from the nurses, fewer times out of bed to void. No pain, No fever. He is out of bed doing homework. He had a bit to eat and drink this morning. The lab work looked good, no transfusions needed today. The doctor was in already. Mark is progressing well. There is hope for a December discharge. Tuesday, November 14, 2006 7:00 AM CST Day 22 or 13. What a trooper. Yesterday, Mark went the whole day without a fever, pain or vomiting. He ate a bacon sandwich with toast in the morning and an ice cream float. Nothing for lunch but ate all of his dinner. All good for him, we tell him daily "if you don't eat you will get a feeding tube" that motivates him. He received a transfusion of platelets and will again today. There is some fluctuation in his white cell count which indicated that he is starting to make new cells, that is great. Yesterday, he worked with OT, exercising. Monday, November 13, 2006 6:47 AM CST Day 21 or 12, three weeks already. Last night Mark was up only three times. NO fever, No pain, No vomiting (last nights meal stayed down), No diarhea, what a great night. Thank you God. This mornings labs are back and he will again receive another transfusion of platelets. His white count which showed some increase over the last two days dropped again, but that could be normal during this engraftment period. Also the move to PICU (room 281)took place before dinner. He now has a nurse responsible only to him from the transplant unit. Wednesday we should return to our last room. Mom is on her way to drop off the last two weeks of work and pick up the next. Sunday, November 12, 2006 9:16 AM CST Day 20 or 11. This is the third attempt to update page, I keep on getting knocked off. Mark had some dinner last night but gave it all back. Up three times during the night. All three of us watched a movie and slept. No fever, No pain both good things. He woke up with a smile. A platelet transfusion has just started. Mom is working with him on his homework, up in a chair. Saturday, November 11, 2006 11:20 AM CST Day 19 or 10. Last night at around 7pm Mark needed morphine for his pain, two hours later more pain med. Go figure that is also when they gave Lasix, so every ten minutes for an hour and every hour through the night he had to get up. So far today no need for pain meds. All of his hair is gone now, he looks so handsome. Friday, November 10, 2006 6:58 AM CST Day 18 or 9. Mark never woke up until near 4pm after yesterday mornings ordeal. The has been No vomiting since that time and was up only a few times overnight. NO pain, No diarhea. His morning labs gemoglobin 7.3, they are pre-medicating him now for a blood transfusion, one unit of blood to be given soon. They have yet to decide on a platelet transfusion. His hair has been falling out constantly with patches of scalp showing. He is pale, white as the sheets and tired. I do not plan on pushing him into a chair or homework unless he shows signs of wakefulness. His entire consumtion of food and drink in past 24 hours that hasn't come back up is a can of grape soda and an ice cream cup.
Thursday, November 9, 2006 6:56 AM CST Day 17 or 8. Yesterday after my entry Mark had his diarhea, vomiting, platelet transfusion, fatigue but NO fever and last night NO complaint of pain. Already one episode of diarhea, waiting on lab work in regards to transfusion. He is already up in a chair and has ordered some raisin brand and hot chocolate, that is a good sign.
Wednesday, November 8, 2006 6:41 AM CST Day 16 or 7. Last night Mark had more pain and was medicated for it. He was up at least a dozen times. Not fair that he doesn't get a good nights sleep. Todays goal is the same as yesterday, get out of bed and eat something. He is going over several Christmas catalogs sitting in bed. I'm glad he is thinking about something other than what's going on. Tuesday, November 7, 2006 6:36 AM CST Day 15 or 6. This sounds almost the same as previous entry. Up five times during the night. No fever, No vomiting, No linen change but he needed pain med during the night. He has no pain this morning and has just turned on Star Wars 5. He needs more platelets, every day it seems. That hasn't been started yet. Monday, November 6, 2006 6:49 AM CST Day 14 or 5. Mark had a fair night, only up out of bed five times. No linen changes, No fever, No vomiting, No diarhea. He is lying in bed, looking very tired, watching some TV. His breakfast order was just placed, root beer (vanilla ice cream) float and Frosted Flakes. The nurse is starting an infusion of 15 units of Platelets, this will put him close to 100 since admission. Let us pray for a good day. Sunday, November 5, 2006 9:50 AM CST Day 13 or 4. Last night was better only four times up and one linen change. Why they waited until bed time for a dressing change of the Broviac or sinus aspiration(for testing)is beyond me. The three of us watched a movie and enjoyed our family time. Another day without a fever and almost 24 hours now without vomiting. He has been sitting up in a chair for almost an hour now and has had some breakfast. They (mom and Mark) are currently working on more homework while he is up and awake. Saturday, November 4, 2006 5:41 PM CST Day 12 and 3. Last night Mark was up every two hours with one or more bodily function, twice the linen had to be changed. Everything in came out until about noon. Again he fell asleep by 1pm. His gums are receeding and red with sores appearing inside his cheek (side effects), painful bowel movements, his hair has started to fall out. In the morning between vomiting, we had him work on his math from school. We are waiting on the IV team, the insertion site of his new broviac is red and inflamed, not looking good. It seems like he is getting dozens of meds, mostly IV now because we can't count on anything staying down. Friday, November 3, 2006 5:11 PM CST Day 11 or 2. Last night Mark was up every 10 minutes because of the meds until about midnight then not so often. NO fever, NO vomiting. When he woke up he saw MOM and smiled. At that point I forgot how little sleep we had gotten. Then later when mom was at work and he was again in the bathroom, his grand-parents came in. The smile was there again and I forgot how little sleep we had. The morning was busy with doctors, PT/OT/musicT/pain manager/nutrition manager. After an attempt at lunch, we watched a movie and fell asleep. He is still sleeping now and I'm waiting to see the smile again. Thursday, November 2, 2006 11:10 AM CST Day 10 or the doctors would say Day 1. The bone marrow was completely infused by 5pm yesterday. After which, Mark received Platelets followed by lasix around 8pm. So every 15 minutes until 2am he was up urinenating. Since 6am it has been more vomiting, diarhea but no fever. He is sleeping as I type. More platelets are to be given and another IV site placed. There are currently 8 lines infusing because of compatability problems the IV team will access him. He won't be happy about that. I just expressed myself when they told me. Naturally there was a reason to have removed the Mediport, it was two years old and a possible source of infection but now that they need one, it's not available. Wednesday, November 1, 2006 7:53 AM CST Day 9 or from the doctors view Day 0, transplant day. The anti-rejection drug was started and a rash showed up on the soles of his feet already (side effect) his fever is gone, D-diff was found in his diarhea so a third anti-biotic was started. Grand-parents on the way in. We will all be here for him today. And last night he received a platelet transfusion. Tuesday, October 31, 2006 8:14 AM CST Day 8 and what a long night. Between the fever as high as 103.7, vomiting, diarhea, changing linen on the bed, the meds, vitals, in and out of staff, Mark (and me) never had more than 45 minutes of continuous sleep. He has developed a rash. His labs are dropping, the doctors just left the room. He is close to needing a platelet transfusion. Monday, October 30, 2006 6:01 AM CST Day 7 his fever has not gone below 102.4 as of yet and the high during the night 103.5 he is moaning and talking in his sleep. The pain is relentless. It breaks our hearts that he is going through this. Sunday, October 29, 2006 12:11 AM CST Day 6 Mark has not been able to hold anything down. His breathing is noisy. He is complaining of pain. Today is a bad day. He is in bed, his eyes half open, watching his favorite show "Sponge Bob".
Saturday, October 28, 2006 4:18 PM CDT Day 5, Mark is getting a bit tired with the comings and goings. His labs are dropping, to be expected. We continue to encourage his eating, drinking and homework. Tonight the three of us will finally sleep in the same room. We are blessed. Mark is with us, there is a donor and doctors that know what to do.
Friday, October 27, 2006 3:55 AM CDT Think positive. Everyday the transplant doctor has told Mark to think positive. Those that do get out, get better quicker. I will post again in a few hours.
Thursday, October 26, 2006 8:05 AM CDT Day 3 but second day of chemo. No side effects yet. He still is eating well and even likes the food. PT wants him out of bed to eat his meals. The surgeons PA just left the room. Last weeks work in the OR is looking good.
Tuesday, October 24, 2006 8:36 PM CDT Mark was admitted today, ACH room 273. It was fun and relaxed before going, then a bit busy. He is cleaned up and is going to watch a little TV before sleep. We will be setting up a web cam in the room for the occasional chat with friends. Monday, October 23, 2006 10:06 AM CDT No turning back. Mark started taking his dilantin. It is a pre-med to prevent seizures common with first drug BUSULFAN. Other common side effects is nausea, vomiting, abnormal levels of salts in blood, high levels of sugar in the blood, dizziness, rash and itching, decrease in the number of red and white blood cells and platelets made in the bone marrow, reduced function of the immune system, hair loss, bronzing of the skin, mouth sores, inability or decreased ability to conceive children, shrinkage of the testicle,....Diarrhea, damage to the liver which can be severe and fatal,, and more possible but rare. Monday, October 23, 2006 10:06 AM CDT No turning back. Mark started taking his dilantin. It is a pre-med to prevent seizures common with first drug BUSULFAN. Other common side effects is nausea, vomiting, abnormal levels of salts in blood, high levels of sugar in the blood, dizziness, rash and itching, decrease in the number of red and white blood cells and platelets made in the bone marrow, reduced function of the immune system, hair loss, bronzing of the skin, mouth sores, inability or decreased ability to conceive children, shrinkage of the testicle,....Diarrhea, damage to the liver which can be severe and fatal,, and more possible but rare. Sunday, October 22, 2006 8:31 AM CDT The new picture is the costume we was to wear for Trick or Treating. He won't have that chance. He continues to rest and do homework, keeping up with the class. Saturday, October 21, 2006 8:47 AM CDT Friday was another day of rest and homework for Mark. At around 4pm we were updated by phone and e-mail by the transplant coordinator. The donor will give his bone marrow on Tuesday the 31st. Mark will be admitted this Tuesday and Wednesday the Chemo will start to destroy his marrow. We are under pressure because of the rise in cancer in his marrow. We have no choice.
Thursday, October 19, 2006 6:18 PM CDT Mark spent the day in bed. The morphine helped him sleep last night and so far only three times today did he need anything for pain. The transplant people called, all of the virus panels sent out are negative, cultures--negative. They had placed a call to Bone Marrow bank explaining the delay and we wait to hear what day the donor can donate. Wednesday, October 18, 2006 5:58 PM CDT 7PM and home again. During surgery, the transplant doctor came to us and explained that there was something that showed up on Marks' sinus scan Monday during that admission. That and the fact that yesterdays specific lab results were not back. Tonight or in the morning we should know those and treat, if necessary whatever is going on. He would have 0 chance if there was a virus and no immune system to fight it. The plan is to admit him on Sunday and start the chemo on Monday. He is to stay home. Avoid contact with others. He is in alot of pain and has morphine to take as well as pre-op meds. Tuesday, October 17, 2006 7:28 PM CDT We just spent the day seeing doctors, cardiac, pulmonary, renal tests and more blood work at ACH. Tonight we pack again for a sterile room. In the morning we will be admitted, and surgery is scheduled for 1pm to remove his medi port and place the larger broviac. Thursday they will start destroying his bone marrow. The following Thursday the donors marrow will be given to Mark. Today they tell us that he has a 30% chance of survival and 50% chance that it will re-occur. Monday, October 16, 2006 7:06 PM CDT Our prayers were answered. His fever broke last night. He had his scans at 7am, at 11am the bone marrow aspiration. The afternoon was spent waiting with clergy..The results are within his window of opportunity, he was allowed to spend the night at home. First thing in the morning we register at ACH, Wednesday admit and afternoon surgery, Thursday they start the chemo to wipe out his bone marrow. Monday, October 16, 2006 8:04 AM CDT Mark was admitted to St.Joseph's yesterday. Saturday night he was restless, in the morning he complained of tired arms and legs. With his breakfast on the table, he started vomitting, after a shower and rest we checked his temp. 101.6 the call was made, the car packed up and off to the hospital. It got up to 102.3. This morning he is back to normal, scans that were scheduled are done. His bone marrow aspiration will take place in a couple of hours. The transplant hospital has been notified of the delay, but again that depends on the pathology today. Please continue with your prayers. Saturday, October 14, 2006 10:00 AM CDT We're at wits end....After our last entry the calls started. First, ACH wanted pre-admission info. OK, but when? the reply..hasn't anyone talked to us? We called the transplant people. The reply...hasn't the oncologist told us? To the cancer clinic...OH, so sorry, we will have the doctor call you. The first reading was wrong, pathology found a 50% increase in cancer, it may be too late for Mark to receive the transplant without fighting the monster. Monday after his scans, Mark needs another bone marrow biopsy that will be read by pathology that day. Everything depends on that result. Wednesday, October 11, 2006 11:56 AM CDT Hello everyone....We have been spending so much time at the beach or in the pool that I have not spent any time updating. Besides the fun time, Mark still does some homework everyday. There have been times when we actually have forgotten about what starts on Monday. We thank God for the time we have and the remaining days. Sunday, October 8, 2006 11:39 AM CDT We did something different yesterday. Just rode around, stopping here and there, looking at things more closely. The day started after breakfast and ended by six. Our family time has been so important to us. Friday, October 6, 2006 6:14 PM CDT Mark has been resting. Pool, beach, homework is occupying his time. He is feeling so much better. Mom is the one with the head cold now, he passed it along. Wednesday, October 4, 2006 5:29 AM CDT The results are in, NO SPIKE of blast cells. That means the donor has more time to be tested and to donate. It also means we have about ten or more days at home before admission. Plenty for us to do, Marks' testing.
Tuesday, October 3, 2006 5:37 AM CDT Yesterday the bone marrow biopsy went without complications. Followed by lunch with a friend. Mark not only complained of back discomfort the rest of the day, but also a stuffy/runny nose. No fever. No results were called to us and we called several times asking. Hopefully his head cold doesn't affect the schedule, and hopefully the cancer did not spike up. Another day waiting, and a day in bed for Mark.
Monday, October 2, 2006 6:08 AM CDT Sunday was very nice and relaxing. Friends and family joined us for burgers and pool time. Mark was happy and that is what we all wanted. He just woke up. NPO until after his biopsy this morning. We will leave shortly. This is a pivotal day. Our time, calendar of events, tests and donor dates revolve on these results.
Sunday, October 1, 2006 7:43 AM CDT Saturday went as planned. The family, including grand-father and his oxygen, watched Mark have his First Communion during the 4P Mass. The pastor made it memorable for all of us. It will be awhile before those pictures are ready to be posted here. Also his class pictures taken on Friday, hopefully will get posted. After was a meal and sleep over with Auntie and his grand-parents. He just called and is excited about friends joining us for a cookout, here at our home. We all know how important Monday is, but none of us are talking about it. Saturday, September 30, 2006 10:36 AM CDT Yesterday, Mark said he had a great day at school. He enjoyed the going away party the school, parents and students helped with. He cried on the way home because he was sad, he won't go back for a long time. I pray that he goes back, that would mean a positive outcome for what is yet to come. Thursday, September 28, 2006 2:47 PM CDT We're back from the meeting. More papers, appointments, he had a dozen tubes of blood drawn. How we stand with the person being tested, cost, possible dates. And everything still depends on Mondays' bone marrow biopsy. A family member, great-aunt arrived while we were there. They are out shopping and spending time together. She wanted good time with him before admission. We passed up Hockey tickets tonight to spend time as a family. Wednesday, September 27, 2006 4:11 PM CDT Marks' day went as planned. All the dental work is complete. We have the note from the dentist to give to the transplant doctor. A gold chain Mark has worn for years was repaired after breaking this past Sunday. Tomorrow, Mark will have to miss school again. Meeting with the doctor again with lab work at the new hospital. The admission date and testing, surgical schedule is to be discussed. Tuesday, September 26, 2006 4:11 PM CDT Today, Mark had a good day. He went to school and is visiting with his grand-parents right now, until dinner. In the morning, he needs to finish with the dentist. Following that, the priest will visit us again. Thursday the transplant doctor wants to meet with the three of us, time yet to be decided. Marks admission will be discussed. Tuesday, September 26, 2006 4:11 PM CDT Today, Mark had a good day. He went to school and is visiting with his grand-parents right now, until dinner. In the morning, he needs to finish with the dentist. Following that, the priest will visit us again. Thursday the transplant doctor wants to meet with the three of us, time yet to be decided. Marks admission will be discussed. Monday, September 25, 2006 7:34 AM CDT New photos added from Saturdays' family pics. Sunday was Church, pool time and family dinner. Mark is at school now. After school, it will be another visit from the priest, he has to receive this week. Not much time left. Wednesday he will not go to school, the dentist needs to finish up and give him a note stating that there are no caveties prior to transplant. Friday will be his last day of school. Saturday, September 23, 2006 4:18 PM CDT On the way to the dentist, our conversation was narrowed to needles, pain and death. He will fight,do what the doctors and parents believe is best for him, and live a long life. But, he also agrees that only God knows when we will die and people of all ages die. His eyes teared up during this talk. We had our family dinner and movie in bed.
Friday, September 22, 2006 3:13 PM CDT Last night, we did attend the Cancer Center meeting. Mark enjoys playing there. This morning, the three of us met with Marks' teachers. We heard how well he has been doing and agreed on a plan for homework in the future. Shortly after that, we met with the priest at our house, continuing his religous education prior to First Communion. Thursday, September 21, 2006 10:19 AM CDT There are five cavities to deal with, and the dentist will not do them all at once. I'm going to pick him up at school shortly and bring him to his doctors' appointment. This evening he wants to go to the Cancer Center meeting. Not sure if we will yet. Wednesday, September 20, 2006 10:28 AM CDT Shortly Mark will go to the dentist. Cleaning, fluoride, and any other dental work starts today. It must all be done before transplant. Later today, someone from the Church, will make a house visit. Again to prepare for his First Communion. Tomorrow, he will go to school but leave early to see his pediatrition for the flu shot. Tuesday, September 19, 2006 5:34 AM CDT Yesterdays lab results were good for Mark. We have two weeks to get things done. The doctor told us just yesterday that, the dentist must fix any cavity, loose tooth, etc. and be given a fluoride treatment before admission. Naturally he has to have his anti-biotics with every visit there. That he can go to school only until the end of the month, counting today seven days of school and only if he is feeling good. Monday, September 18, 2006 6:42 AM CDT Yesterday, we met with the priest. First Communion not yet given. The family sat down to a Thanksgiving dinner. This morning clinic and lab work before school. Things to schedule, flu shot, dentist, talk with school and teachers. Cardiac, pulmonary,renal,etc. tests to be done first. Everything depends on the lab results. If good enough, we will have two more weeks before the next bone marrow biopsy. We are taking one day at a time.
Saturday, September 16, 2006 3:17 PM CDT Even in his sleep last night, there were moments when his chest shook like he was crying. We cannot stop thinking of what he is going to go through. It will be five years that he has been fighting. We were treated to a wonderful meal last night, thank-you. Mark enjoyed the time. Saturday, September 16, 2006 3:17 PM CDT Even in his sleep last night, there were moments when his chest shook like he was crying. We cannot stop thinking of what he is going to go through. It will be five years that he has been fighting. We were treated to a wonderful meal last night, thank-you. Mark enjoyed the time. Friday, September 15, 2006 8:37 AM CDT It was another sleepless night. Mark lying between us. Turning over the conversation with the transplant doctor. He had to tell us everything and one of the options is to do nothing. Let him enjoy his remaining time and let him go to GOD. For us, that is not an option. Mark is a fighter and we will do everything, anything that will help him. We believe in prayer and the Power of God. Friday, September 15, 2006 8:37 AM CDT It was another sleepless night. Mark lying between us. Turning over the conversation with the transplant doctor. He had to tell us everything and one of the options is to do nothing. Let him enjoy his remaining time and let him go to GOD. For us, that is not an option. Mark is a fighter and we will do everything, anything that will help him. We believe in prayer and the Power of God. Thursday, September 14, 2006 7:39 PM CDT We're back home. The transplant doctor is very nice. We are overloaded with information and possible outcomes. The search revealed one match with 6 out of 6, but it is cord blood and it is committed to someone else. Any of the other possibles have only 5 out of 6 and the search continues. One of the possibilities is to use one of those if necessary,and if available and still willing, alive or in the country. Many people registered have moved, died or changed their minds. Second maybe the cord will not be used and released to Mark. The doctor says a living person is best. Many people are ready to be tested and we pray that there is a match that is best for our son. He is to have labs next week, based on the results we will know if we can wait until the 4th for another marrow biopsy. Time is against us and only God knows how much time there is to wait. There are many tests of the heart, lungs, kidney before hitting him with chemo to get ready for a transplant.
Thursday, September 14, 2006 8:16 AM CDT There were calls last night. Friends organizing to find a marrow match. Both grand-parents taking turns sitting with us. Mark slept with us, our sleep was not restfull. We're up moving around, keeping ourselves busy until the doctors meeting, praying that a day has made a difference..praying for a match. When our priest visits tonight, we hope that our prayers are both of thanks and preparation for what is to come. Wednesday, September 13, 2006 11:15 AM CDT We all sat down with Mark last night and told him as much as we felt was needed. He cried, we cried. This morning I went to see the priest to hasten Marks first Communion and pray. They let me cry. They will come to the house tomorrow evening after our meeting with the doctor. We pray that God, Jesus Christ, his mother Mary watch over our son.
Tuesday, September 12, 2006 5:01 PM CDT It was only this morning that I updated this site. Two phone calls have changed everything. First with the oncologist, we should have started looking two months ago, we had NO control. How Mark has to see the transplant doctor now, this week. Second, with the transplant doctor, we need to start something now, this week. If there is no match soon they will be looking at cord blood. We meet with him Thursday. If we start now he has a 40% chance of survival, less if we wait for more symptoms. That there is 50 to 100% chance of complications. After dinner, we and his grand-parents will tell him what he needs to know and deal with one day at a time. PLEASE PRAY FOR MARK. Tuesday, September 12, 2006 8:30 AM CDT The test was confirmed. There is an increase of blasts in Marks bone marrow. His next biopsy is now scheduled for Wednesday October 4th under anesthesia. He still feels good, a little tired and noticeable bruising. We're searching hospital web sites. Attending cancer center meetings, with group and alone. Calling local Leukemia group, reaching out to parents that are or have gone through a bone marrow transplant. And yet, still deal with homework and scheduling a parent/teacher meeting, trying to maintain the norm for him. Waiting for a bone marrow match. The emotional stress, worried about our son, what is yet to come. We were told that nothing has been received in his account at the Cancer Center, that doesn't help. The hospital already has us in collection, the anesthesia group and pathologist are next but we will continue our plan to deal with those issues only second to Marks care. Added to the stress is Marks grand-father, he was told that six months is what he can expect but he goes on and is there for Mark everyday. Thursday, September 7, 2006 6:53 AM CDT Yesterday morning Mark had another bone marrow biopsy under anesthesia. Both of us (mom and dad) and his grand-mother went also. It went well, little complaint of the pain. Neither my wife or I ate dinner because at that time the chief oncologist had called. The cancer has increased, his white count has dropped, "I don't like the looks of it". My wife went to tell her parents, I stayed home and held my emotions in. He spent the night in bed with us, we got no sleep. He has no bone marrow match, as of yet. So many questions. Saturday, September 2, 2006 8:56 AM CDT Mark had his lab work and visit with the oncologist on Wednesday. The schedule has been moved up. This Wednesday there will be another bone marrow biopsy under anesthesia. Following those results they will know how fast it is spreading and if meds will be started waiting on the bone marrow search. Monday, August 28, 2006 6:30 AM CDT Hello everyone........After receiving the bad news, we decided to take Mark out of school for a week and visit Orlando (Mickey) one of his favorite places. Today, we will schedule his doctor and lab schedule. Family and friends (a big thank you to Richard G.) have been there for us. Next Sunday, we will have a party at the house. It will give us all time with Mark while he still looks and feels good. Tuesday, August 15, 2006 11:55 AM CDT The diagnosis is Leukemia stage 2. His name has been sent to the National Bone Marrow Registry. He can get no more chemo. Over 10 nvolvement. The plan is to continue with blood work, monitor his health for fatigue and bruising, scans next month and next bone marrow biopsy in October. Our families have been notified for donor testing. We ask that everyone continue to pray.
Monday, August 14, 2006 5:20 PM CDT The pathologist found BLASTS in Marks last bone marrow biopsy. His options are limited now. Please Pray for him. Tuesday, August 1, 2006 3:50 PM CDT Hello everyone...Mark just came home from the hospital. He had his lab work and bone marrow aspiration under anesthesia. He looks good, no complaints and looking forward to school starting next week. Now we wait for the results.
Tuesday, July 25, 2006 6:58 PM CDT Hello everyone,,,,,,,,,,This new picture is typically how he spent his summer, playing on his PS2. We kept him busy reading, writting, math, spelling but he still has enjoyed the pool, beach, movies. In a few weeks before school starts he will have his next bone marrow biopsy under anesthesia. Friday, July 14, 2006 6:20 AM CDT Sorry for the delay. Computer issues, hope to upload new pic this weekend.
Tuesday, June 27, 2006 4:17 PM CDT Sorry for the delay. Mark had his day at the clinic, last Thursday. He saw the oncologist (one of them) and had his labs drawn. They have yet to call the results, we take that as good. Next Thursday, after his birthday on Monday, he will be scanned with x-rays. Thursday, June 15, 2006 6:08 AM CDT Hello everyone. So far So good. As mentioned before Marks' bone marrow is unchanged and everything continues the way it has been. This Thursday will be his monthly clinic visit to the doctor and lab work. He and I saw the movie "CARS" this week. He enjoyed it. Monday, June 5, 2006 9:46 AM CDT Hello everyone.........After school let out, we took Mark to Orlando. He went to two water parks and the Kennedy Space Center. There has been no change in he bone marrow results. The testing and scans will continue. Tuesday, May 23, 2006 4:42 PM CDT We still don't have his results. It will be two weeks on Thursday, his last day of school. No news is good news. We plan on a trip to the water parks in Orlando after school is out. He is looking forward to it. Thank goodness that our previously bought tickets are still valid, one less thing to think about trying to make him happy. Tuesday, May 16, 2006 10:21 AM CDT Hello everyone.....Mark has been having a good week since the bone marrow aspiration. We still await the results. He is at school now and looking forward to summer break, just like all of the other children. No more tests at school now, only fun. Monday, May 8, 2006 4:00 PM CDT Hello everyone....Mark underwent his bone marrow aspiration under anesthesia on Thursday. That evening and the following day he was hurting. He has recovered and went to school today. We now wait for the results. Typically, we hear in two weeks. He is looking good and keeping his weight on. Looking forward to summer vacation, just like every other child. Friday, April 28, 2006 7:54 AM CDT Hello everyone...It's off to the dentist again today. Next week Thursday will be Marks' bone marrow biopsy under anesthesia. He will miss school that day and the following day. Thursday, April 20, 2006 2:50 PM CDT Hello everyone....Monday Mark was at the dentist and again on Tuesday, he had to have antibiotics first. Tuesday, he also went to the cancer clinic for blood work and exam. His next bone marrow biopsy under anesthesia is now scheduled for Thursday May 4th. Thursday, April 13, 2006 6:28 AM CDT Hello everyone. It has been a good week. Talking with some of the moms lately, they all say he looks good. I hear about his occasional fatigue, lack of apetite while at school. But he pushes on. Another second grade boy in the same school just had surgery, Wilms tumor II, contained (unlike Marks stage IV with mets to lungs and now MDS in his marrow). Mark gave his story and had a question and answer period with the children in that room about cancer. Wednesday, April 5, 2006 7:09 PM CDT Hello everyone. The pictures arrived and the above picture was one of his best memories of his recent tour of the Tampa FBI building. Thank you Special Agent G. Tell all of those we met how much Mark enjoyed himself. Sunday, March 26, 2006 9:55 AM CST Hello everyone,,,,,,, On Friday morning Mark had a treat. A guided tour of the Tampa FBI building. He was lucky to meet so many kind people right up to the SAC (special agent in charge of central florida). There was a picture taken we hope to receive and post at a later date.
Monday, March 20, 2006 10:23 AM CST Hello everyone,,,,Marks on school vacation and today started with scans and x-rays. What a way to start a vacation. He is looking good and has no complaints.
Wednesday, March 15, 2006 9:11 AM CST The meeting is over. Mark will not take that medicine. His health and our happiness is and always has been in Gods' hands. Friday, March 10, 2006 2:31 PM CST Hello everyone.....Mark is feeling better. We meet with the oncologists next Wednesday. Celgene Corp. which makes the drug they want to start says the cost is $60,000.00 a year (found on there web site). This puts more pressure on us, when the drug is only approved for adults. It was enough just thinking about wether or not he should take it. Since this has all started only one of us has been working at any given time. After the first year we re-financed the house, after the second year we took out a second mortgage. We have maxed out two credit cards and are working on a third. What are we to do? He is first. Do what ever and deal with it later. I'm not going to pray for anything other than his health. He is scheduled for scans again Monday the 20th. Monday, March 6, 2006 3:27 PM CST Hello everyone. Mark still has the stuffy/runny nose, occasional cough, no fever. Plenty of rest, fluids and school. Tomorrow, he has a dental appointment. Next week Wednesday is our scheduled meeting with the oncologists to discuss his therapy. Updated picture above, friends from the Tampa FBI office, showered him with gifts. They are also holding an application for him to join. He was thrilled with it all. He dreams of the future.
Tuesday, February 28, 2006 6:41 AM CST Sorry for the delay. Mark has stayed out of the hospital and has been going to school. Again, on Sunday he complained of a headache. Yesterday, he developed a stuffy/runny nose. This morning the drainage is green. This is how it started last month before spending a week in the hospital. The teachers have been asked to call today if anything else develops.
Wednesday, February 15, 2006 3:38 PM CST Hello everyone, alot has happened since I last wrote. Friday February 3rd, I picked Mark up after school. He had been complaining of a stuffy nose,leg pain and a headache during school. He was hot. He had a fever. I brought him home to pack for the hospital and his fever broke. He lost his apetite the next day. The fever was low grade. He stayed home on Monday, diarhea started. Tuesday morning the fever exceeded 101 and we were off to the hospital. Sunday we brought him home. Saturday, February 4, 2006 9:48 AM CST Hello everyone..... Mark had a good week until Friday. I picked him up at school. He was running a low grade fever. Brought him home, cooled him off, forced fluids. By dinner time it was still 100.1 F.... This morning he has no temp, looks good, feels good. Saturday, January 28, 2006 11:09 AM CST Hello everyone.....Mark had a good week. No complaints of pain. He went to school everyday. He looks good, feels good. We thank God for everything and everyone that cares enough to check on him. Saturday, January 28, 2006 11:09 AM CST Hello everyone.....Mark had a good week. No complaints of pain. He went to school everyday. He looks good, feels good. We thank God for everything and everyone that cares enough to check on him. Saturday, January 21, 2006 11:01 AM CST Hello all. Mark had a great time at Disney. We all enjoyed the time. He is looking good, feeling good, we thank God. He sent in an application to represent Huendai this year. It is for their charity work they do for children with cancer. I'll let you all know if he is selected. Friday, January 6, 2006 3:51 PM CST Hello everyone,,,,,,,,,Marks' scans and x-rays are still clean. The preliminary biopsy report from the hospital was good, the genetics (send out, the one that shows the MDS) is still not in. We're taking Mark to Disney this Saturday. He still looks good and feels good. No further complaints of pain. Enjoy the New Year. Monday, January 2, 2006 9:31 AM CST Happy New Year to everyone....We had an enjoyable holiday, spending alot of time relaxing, movies, and two football games (GO BUCs). His teacher was updated this morning. Mark will start the year with scans tomorrow when all his classmates return to school. We still await the complete results of his bone marrow biopsy. Saturday, December 24, 2005 9:39 AM CST Hello everyone....We heard from the clinic yesterday. On x-ray, Marks' hips and knees look good. He will be scanned January 3rd. The preliminary wet read looked good on the bone marrow biopsy. It takes two weeks for the rest. He is like many normal children, anxious today. He can't wait for Christmas. We are Blessed that he will be home with us. MERRY CHRISTMAS TO ALL Thursday, December 15, 2005 6:27 PM CST Hello everyone.....Mark was examined on Monday with lab work. Because of the pain, his bone marrow biopsy under anesthesia will be next Wednesday following x-rays. We worry that he will be admitted, as in the past, following the procedure. With Christmas just days away, we still need to do his shopping and want him home. Saturday, December 10, 2005 12:23 AM CST Mark has had busy week. Last weekend the FROG TEAM (Friends Rembering Our George,,a cancer victim)painted our house. In the last four years taking care of Mark and with only one of us working the house repairs were not a priority. We thank them all for their time and generosity. On Tuesday his teacher informed us of pain that Mark has been having, he never told us. He will be seen by his doctor this coming Monday. Until then we have insisted he rest. As of this moment, we still have not done Christmas shopping.
Thursday, December 1, 2005 6:50 AM CST Hello everyone,,,,,,,Mark is looking good, feeling good. We received news of another child passing on to the Lord. It saddens us and strengthens the decisions we have made. Living with one pay check ,so that one of us, stays with him at all times. Enjoying the time we have together.
Sunday, November 13, 2005 9:19 AM CST Hello everyone. Mark went to clinic this week. He had his lab work done and one of the oncologists checked him out. He looks good. His last bone marrow results were discussed, the MDS is still present. He is still suppressing the progression, still avoiding more treatments, still avoiding bone marrow transplants. Wednesday, October 26, 2005 3:25 PM CDT Mark has been busy. We surprised him and took him to Boston last Thursday. He walked alot. Did a trolley tour, a harbor cruise, hailed a few taxi rides and ate well. He returned to school today. Other than a stuffy/runny nose, he is doing well. Pictures coming soon.
Monday, October 17, 2005 5:29 AM CDT Mark recovered from his fever and came home. He has had a good weekend and is on his way to school. Yesterday, thanks to a generous man, Mark and family saw his favorite football team win. GO BUCs. Tuesday, October 11, 2005 4:27 AM CDT On Monday Mark had his bone marrow biopsy under anesthesia. All went well for a few hours. He is now an in-patient. Another fever from what?. More tests. Sunday, October 9, 2005 8:26 AM CDT Hello everyone. Mark had a good week. In the morning, he will start in the clinic. Lab work, port access then to the hospital for anesthesia and another bone marrow biopsy. He doesn't want to go. Saturday, October 1, 2005 9:14 AM CDT Hello everyone.......The fever broke but then there had been blood in his stools. After a few days of anti-biotics and blood free stools, Mark came home and made it to school on Thursday and Friday. Sunday, September 25, 2005 6:45 PM CDT I hate giving good news. Just yesterday, I did. Today Mark was admitted again for a fever. Over 103 again. Join me in prayer that all turns out well for him. Saturday, September 24, 2005 4:42 PM CDT Hello everyone. Mark had a good week. He went to school every day. He had no complaints of pain. Last Sunday, he and I went to the BUCs game (thanks to one of the coaches that gave us tickets. THANK YOU MR. JONES. Mark saw his favorite team win and his favorite player score. GO MIKE GO. He is happily sleeping over with his grand-parents tonight. This week he will have clinic/labs. A Childrens Cancer Center function on Wednesday, after school. Thursday, September 15, 2005 6:07 PM CDT WOW. I just realized that I had not updated everyone lately. Please forgive me. Mark looks good, feels good, no complaints. He has been going to school like all the other children. There is some normalcy in our home. Next week he again has lab work. But, first, on Sunday a kind hearted coach from the Bucs is providing Mark another opportunity to see his favorite team play. GO BUCS. Thursday, September 1, 2005 4:40 PM CDT Our prayers were answered. After a sleepless night, Mark had his scans. There is no tumor. Because his abdominal muscles on his left side were cut with probable nerve damage, during his first surgery, his right side has been working harder. We left the hospital and are home celebrating. He will go to school in the AM. Thank-you all for your concern and prayers. Wednesday, August 31, 2005 10:06 PM CDT Mark needs your prayers. For five days he has lost his apetite. He has abdominal pain, feels nauseated. Today we had his oncologist see him. Tonight he is admitted, waiting for scans. They/we feel a mass in his abdomen. We are scared. Wednesday, August 24, 2005 7:26 AM CDT Hello everyone,,,Mark has been doing good. His pain was gone by last Friday, so he went to school. His neck was stiff but no complaints. On Saturday, he and I went to see the BUCS play. He was so happy. We thank the friends who gave us those tickets. Thanks also goes out to those that have helped us financially. Besides paying the bills, we recently replaced his burned out computer monitor. He is not active, so his computer keeps him busy. Learning programs mostly, rarely games. Again a big THANK-YOU. Wednesday, August 17, 2005 6:35 AM CDT Hello, it was quite the surprise yesterday that the doctors released Mark. Yes, the fever had broken. Nothing was growing in all of the cultures, the lab work was good for him. BUT, he was still in pain with the stiff neck. They were just not concerned about it. So we brought him home and at two this morning, he awoke, crying in pain. He feels a little bit better this morning. We're keeping him home today. Saturday, August 13, 2005 7:19 PM CDT It breaks my heart. Mark was admitted today in pain, head to toe, dizzy. He also has a fever. The preliminary marrow report was unchanged and he was producing platelets. He was lucky to start school this past Thursday. Two days in school. And now this. We will bring a computer to the hospital and try to update as we can. Until then, please continue praying. He so enjoyed watching the Bucs play last night. Knowing that they won and the Devil Rays made him happy today. Our friends have our cell phone numbers, you can reach us easier that way. Sunday, August 7, 2005 9:24 AM CDT Mark has had a good week. We did regular family things. School uniforms and supplies. Tuesday he is scheduled for another bone marrow biopsy. He is not looking forward to that. We picked up Marks' signed and framed poster from the Cancer Center, of him with Mike A. It is now hung on the wall at home where we can all enjoy. Sunday, July 31, 2005 9:55 AM CDT Hello everyone. Marks' recent lab results were good for him. He and I play everyday, in the pool a lot, weather permitting. Looking at him, it is hard to believe that things are wrong. We're enjoying all of our time with him. Momentarily it is off to the pool and a movie at 1pm "Sky High". We found great pleasure this week just getting his new school clothes and supplies. Staying positive with our thinking all of the time. Saturday, July 16, 2005 11:17 AM CDT Mark celebrated his 8th birthday at home with family and good friends. He has been looking good. Last weeks labs were good for him. His last scan was clean. The bone marrow tests remain the same. He still complains of leg pain, right leg mostly. Now that I no longer have a job, my time with him has been most enjoyable. We do alot together, everything from errands to play. Wednesday is another doctors appointment, he does not want to go. Saturday, July 2, 2005 8:20 AM CDT It has been tiresome. After a wonderful vacation in Orlando Mark had a bone biopsy (all of the results are not in, but so far no change). He was scanned, he still is free of solid tumors. His energy level is about four to six hours a day with frequent complaints of bone pain. After the years of dealing with his cancer, I (his father) cannot deal with it and work. I left my job this past week to spend everyday with Mark. Again, we were told to enjoy what time we have with him. We will deal with the bills later. Time with him is more important to us now. Saturday, June 11, 2005 10:05 AM CDT Hello everyone. We had a bit of trouble getting into this site. It seems they updated recently.
Tuesday, May 24, 2005 6:43 PM CDT Hello everyone. Yesterday Mark was in alot of pain, something that hasn't happened in weeks. The pain was/is in his legs. No fever and no apparent infections/swelling of any particular parts. We kept him home today. With our vacation only days away we hope for a quick recovery and energy to see and do what he wants on our first vacation week since 2001. We are blessed with friends that call and write checking on him and us. Wednesday, May 18, 2005 5:53 AM CDT Hello everyone,,,,,,,,Mark has been looking and feeling good this past week. He even went to a birthday party for a classmate last saturday, the first time he has been well enough to go. He enjoyed his time there and didn't want to leave. I enjoyed watching him play with the other children. Monday before school he had lab work done at the clinic and everything was good for him. The doctor gave to us a slip to bring to Disney, allowing him to avoid the lines. We are all looking forward to our first vacation week in over three years. When we return, we will deal with his scan/labs and next bone marrow biopsy. Wednesday, May 11, 2005 7:34 AM CDT Hello, another week of rest. Clinic and lab work this past week again. Mark is looking good and most of the time feeling well. He is excited about the end of the school year and a vacation. His next bone marrow biopsy and scan will be next month. Until then we encourage him in everything he does, from eating to studying. Tuesday, May 3, 2005 7:29 AM CDT Please forgive me for not updating sooner. We have been enjoying our time with Mark. He has gone to school as much as his health has allowed. He was sick and missed meeting with Mike A. at the Fishing/Golf weekend. Having him at home does make a wonderful difference in our attitudes. The things he says can turn tired faces into smiles. Please God let him stay with us longer. Tuesday, April 12, 2005 4:26 PM CDT The report came in, NO CHANGE from last biopsy. The oncologists recommend doing nothing but lab work and next bone marrow biopsy in two months. He has been home sick since Friday, but HOME. We can deal with the green drainage from his nose and the cough, having no fever is the key. We're looking into a second opinion soon. We have only dealt with this group of oncologists and we need to know if they are and have been doing the right thing for Mark. Thursday, April 7, 2005 4:38 PM CDT A friend of ours wrote and asked why no update in a week. Fear, we're afraid of the results. As of today, two weeks have passed, the results are not in. They were called twice this week (by the clinic), it is taking a little longer this time. We want them to be sure, so it is probably a good thing. Thursday, March 24, 2005 6:04 PM CST Mark had his bone marrow biopsy today under anesthesia. He slept a little longer than last time but woke up in a good mood. After visiting with friends at the hospital we left and enjoyed the rest of the day resting and playing games. He won at all of them. At this moment, he is lying on the couch resting and watching "Atlantis". We wait now for the results (it was two weeks last time) it is in Gods' hands. Saturday, March 19, 2005 7:52 AM CST On Monday they found the source of infection, staph, and started a second anti-biotic. Within hours, the fever left his body. Tuesday around 3PM, we took him home. Before leaving he was scaned (chest/abd) and the cardiac echo was done. Friday, we were told that there are no tumors seen in the scan and his heart is still functioning as it should be. We thank God for good news. Sunday, March 13, 2005 9:29 AM CST As of Thursday evening Mark has been in the hospital. He went in with a fever and as of this morning, still has one. The blood/urine/throat cultures have all come back negative. He has had a few visitors, all are good friends that visit whenever he is an inpatient. We wait in hope and prayer that this is not related to the Leukemia, that maybe it IS just a cold or virus. Tuesday, March 8, 2005 3:41 PM CST Hello everyone. Mark is enjoying his break. He is looking good and has been going to school. His friend and ours, Richard, gave us tickets for last Saturdays Monday, February 28, 2005 6:39 AM CST Hello, Mark and mom are on the way to the clinic, lab test. Then off to school. He has been home and school for the past week. Resting as much as time allows. As of today, I (Marks dad) will start working the night shift. We have started to reorganize our lives, getting ready for the next protocol. We will have him covered 24/7 this way. They want to scan him next week, the bone marrow biopsy to follow. At Church yesterday, I was again asking God "Why", and what is His plan. We pray for Mark and only ask that others do the same. Sunday, February 20, 2005 12:38 AM CST Mark was running a low temp on Wednesday, his ANC was low, sure enough on Thursday he spiked >101 and off to the hospital. He felt alot better yesterday and was smiling ear to ear after a visit with his friend Richard. Richard came back later with dinner. Delicious food from his restaurant and his racing medals for Mark. He rarely eats while hospitalized but last night he thought he was in heaven, the food was so delicious. Can't say thank-you enough for making his day brighter. Pictures of Mark and Richard can be seen in photo album. Thursday, February 10, 2005 7:17 PM CST This is very difficult for me to write. Last week I wrote that Mark started a week of chemo. After only two days his platelet count dropped to the 40s. They also wanted to repeat his genetic study. He came home Wednesday. Labs were repeated Sunday and yesterday. His platelets were just over 20. Then we received phone calls, please call back (oncologist). We were told that Mark has AML (Leukemia)cells, it is in his bone marrow. They have stopped, discontinued the rest of his chemo treatment protocol. He will have six weeks to rest. Then another bone marrow biopsy,scan,and labs every few days before then. They say the next protocol will be very hard for him, intense, and he may not leave the hospital for weeks/month. I have been crying non-stop. His odds are not good after three years of fighting, surgeries/radiation/chemo for the other cancer he had.
Tuesday, February 1, 2005 7:25 PM CST Mark was admitted Monday morning for a week of chemo, even with a platelet count of only 75. The doctors did not want to postpone any longer. His results are still not back from the bone marrow test that was sent out. Monday, January 24, 2005 5:56 PM CST It has been busy here. On Friday Marks grand-father came home from the hospital and Marks pathology report on the bone marrow came back free of leukemia. We are still waiting on the genetic report (pray it will also be negative). We opened a bottle of wine and celebrated that night, Mark even had a couple of sips. Saturday he went down hill. No specific complaint, lack of apetite and malaise prompted us to keep him in bed with us that night. At one AM, we noticed how hot he was, his temp was 103. By two AM he was an in-patient. The fever broke, his WBCs were up, an infection somewhere. Today, his labs normalized except again the low platelet count. He could not start chemo and by four PM the doctors were satisfied with his cultures (-) and clean x-rays. He came home. Time to rest and enjoy our time with Mark. Tuesday, January 18, 2005 5:41 PM CST We have been on the edge. Yesterday, Mark went to the hospital again trying to start a week of chemo. He had abnormal labs, some would indicate Leukemia. He was sent home and this morning we brought him in for a bone marrow biopsy under anesthesia. It will be three days before pathology gives the first set of results, the rest are sent out and will take ten days. We have hime home. He has pain in the hip from the procedure. The doctors want him back on Monday regardless for more lab work and possible admission for chemo. We are waiting for good news, the wet read didn't show anything, but the doctor didn't show a smile or make us feel at ease. Sunday, January 16, 2005 11:00 AM CST Hello everyone.....Mark had a wonderful week. No fevers, no pain, no vomitting. He ate good, slept good and went to school. Mid term report card came out. He missed 59 days in the first half of school and still has a perfect report card. Two fifth graders at his school had projects. They both interviewed him for their reports. His life with cancer and the treatments. We can't wait to read them. Tomorrow morning he will start a week of chemo. It has already been postponed three times because of low platelet counts. Monday, January 10, 2005 3:34 PM CST Hello everyone,,,,,,,,Mark has still not recovered from his last round of chemo. His platelet count is still only in the 60s. Next Monday, they will try again. Until then he will be in school and loving it. Time at home, time at school. Monday, January 3, 2005 2:59 PM CST Happy New Year. Mark was home with us, and we were all asleep long before the clock struck 12. LOL... With his bags packed, Mark was again ready for admission this morning. His platelet count was lower than last week. Once again his week of chemo is postponed until next Monday. He is looking forward to going to school tomorrow and the rest of the week like the other children. Tuesday, December 28, 2004 3:34 PM CST Happy Holidays. We were Blessed. Mark was home for Christmas. He also went to the Bucs' game the following day, thanks to the generosity of a friend. On Monday he went to the hospital expecting to start a week of chemo. His platelet count was too low. He will be admitted next Monday. Until then he is to recover some more and enjoy his school vacation, home with mom while dad works. Tuesday, December 21, 2004 3:59 PM CST Hello everyone and thank-you for visiting Marks' site. Last Friday Mark went to clinic and didn't need any transfusions as well as yesterday (Monday). We had a quite weekend at home, relaxing. Last night he complained of pain in his mouth when eating, not near his blisters on his gum line, so today after calling the clinic twice (they knew yesterday that he had blood blisters--typical of low platelet count) we took him to the pediatric dentist. His visits are infrequent because of the chemo, fevers and low blood/platelet counts. They had to remove a tooth, the nerve was exposed. It was a baby tooth, would have been out eventually. Almost an hour went by before the bleeding had stopped. Thursday, December 16, 2004 5:19 PM CST Hello, quite so far. Mark came home last Friday. He went to clinic Monday and Wednesday, to go again in the morning. Friday, December 10, 2004 5:04 PM CST Hello, it was a tough week. Never had time to update his page. Marks fever didn't break until Saturday night at midnight. Sunday was a good day. Monday the doctors started a round of chemo, 1/4 reduced and one day less. They are hoping for better health and labs before his next round. He came home this morning. Our water line coming into the house was broken and a bubbling pool in the front yard. Knock on wood, the plumber understood his health care needs, the line was fixed within two hours after his arrival. Marks grand-father had back surgery today. We just spoke with him, things went well. We want to thank Cheryl and Emily for sitting with Mark this week while we spent time with Marks grand-father. Initially we all believed it was his end of life. We also want to thank Richard (Race for Life), he wrote today and told us what he is giving to Marks account at the Cancer Center. Just in time for Christmas. Mark will see something under the tree now. God Bless you all. Friday, December 3, 2004 4:58 PM CST Mark was doing just fine since clinic on Monday. He went to school Tuesday, Wednesday, Thursday and today Friday. I spent the day in the ER with chest pains and an extremly high blood pressure. Never made it home until 4PM. At 5PM Mark spiked a fever. Soo far out from his last dose of chemo, two weeks past the day he should have started another round. It doesn't make sense. None of this does. Why is chemo soo hard for him. He is the love of our life. The emotional, physical and financial stress is really hard on us. Monday, November 29, 2004 11:47 AM CST Hello. Mark was home for Thanksgiving. We have alot to be greatfull for. Today, he did a photo shoot with Mike Alstott while waiting on his lab results. He had a great time. His platelet count this week is again too low to start chemo. He will go to school the rest of the week, his ANC is OK. Monday, November 22, 2004 4:10 PM CST Hello all. On Sunday Mark had lab work. His ANC (three weeks out of chemo)dropped to 52. His platelet count was in the 40s. He did not start a round of chemo. He did not go to school (no immune system). He will be home for Thanksgiving. One day at a time. He is looking good. Thursday, November 18, 2004 4:00 PM CST Hello, Mark just got home. Fever didn't last long. Morphine was needed only the first day and he finished five days of anti-biotics. Yesterday he received four more units of platelets to go with the four on Saturday with the unit of blood. The doctor wants us to have his labs drawn Sunday. If his own platelet count is 100, he will start another round of chemo Monday morning. Not much time at home. Sunday, November 14, 2004 5:52 PM CST Hello, Mark went to clinic on Friday. He needed and received four units of platelets. Then it was off to the Fishing Derby, fourth year he attends. He caught six fish and was thrilled. Saturday he awoke with a bump on his foot. As the day went by, the bump got bigger, he complained more and could not walk on it. There was a fever and the trip to the hospital. Morphine again for pain, anti-biotics (only two so far) and tests. He will be scanned on Tuesday as well as a hearing test. We think his hearing has been affected by the chemo. It has been three or four weeks now, he hasn't been to school but keeping up with the work. Thanks to the kindness of his teacher Mrs. Wilson. Thursday, November 11, 2004 3:32 PM CST Hello everyone, Mark went to clinic on Monday. He needed and received four units of platelets. His ANC was only 400. He could not go to school with such a low immune system. Wednesday was clinic, his labs were low but did not receive blood products. His ANC was up but his school was off today and tomorrow. He will go to clinic again in the AM then off to the Cancer group Fishing Derby. This will be the fourth year he attends. He really enjoys the time on the warf fishing.
Monday, November 8, 2004 3:45 PM CST Hello. Last Friday at clinic Mark needed four units of platelets and one unit of blood. Saturday evening, for the second year, he started "Richard's Run for Life" in beautiful Ybor (Tampa). Sunday it was a movie with mom and dad, "the Incredibles". Today, he went to clinic and needed four more units of blood. Thursday, November 4, 2004 5:42 PM CST Hello, so far still home. Mark had lab work on Monday and Wednesday. Wednesday he needed, and received four units of platelets. He has had his complaints of knee pain, headache and fatigue. All have resolved with rest and Tylenol. Tomorrow (Friday) he will go to clinic again. Thursday, October 28, 2004 3:50 PM CDT Hello. Mark is home. Clinic for lab work in the morning, and the wait begins. When will the fever come? Will the next time be worse than the last admission with four different infection sites at the same time? We pray to God that he remains home for two weeks and is healthy enough to move on to the next round of chemo.
Tuesday, October 26, 2004 6:28 PM CDT Hello, Mark was admitted Monday for a round of chemo. Still there. Lack of apetite. Cried over the weekend, didn't want to go back into the hospital. He wanted to go to school. It has been a tough three years. Thursday, October 21, 2004 4:40 PM CDT On Monday Mark had labs done at clinic, too low to start chemo. Tuesday he went to school for a few hours and then to the surgeons office for post surgical check-up. The two sites are looking good. The third, where the old port was, is starting to heal over. Sunday we will check his labs and have an idea as whether he will be admitted next Monday or not. All in all he looks better every day. Friday, October 15, 2004 5:10 PM CDT Hello everyone....Mark received four units of platelets Wednesday morning and off to surgery that afternoon. The surgeon gave him a new Mediport on the left and removed the one (intact) from the right. He was unable to close the wound, due to the ongoing infection and lack of heathy tissue to bring together. He is home. We will do dressing changes twice a day. Lab work at clinic today was low but nothing needed. Monday he will have more labs done at clinic. Chemo is cancelled until????? Tuesday, October 12, 2004 6:25 PM CDT Mark is scheduled for admission and surgery tomorrow. His mediport is showing through the broken skin as a result of his recent infections. That site is still infected according to the surgeon. Please join us in prayer for his well being. His labs never normalized, he will have more blood products in the morning in the AM before his 1:30 start time. Sunday, October 10, 2004 8:16 AM CDT Day 18, Wednesday the morphine PCA was removed. He is feeling better. This morning the last of his anti-biotics finished. There is still an open wound over his port. He is receiving four more units of platelets now, making it a total of 24 units this admission and 2 of blood. The oncologist(s) and infection disease doctors are going to let him come home TODAY. It will be up to the surgeon now as to when his medi-port will be changed out. We are hoping for a few days home, his labs are still not in normal range (even for him). He is already planning what mom is going to make to eat today; and being with his dog & family at home. Sunday, October 3, 2004 7:15 PM CDT Mark has been in the hospital for 11 days now. He has fought off four seperate infections/fevers. The worse, over his mediport, broke skin and has not been accessible. The surgeon has been waiting for normalized labs to remove the port and place another on the left side. No more cooling blanket but the morphine drip is still going as well as three different anti-biotics. As of today he has received 20 units of platelets and two of blood. We have no idea when he will get out. Friday, September 24, 2004 7:52 PM CDT Mark woke up Thursday at 5am with a fever and pain/swelling over his port and into the right shoulder. Since that time he developed two more areas of pain and swelling in his left leg. The lower leg looks like an egg. He still has the fever and is on a cooling blanket. He has a morphine PCA, giving him a constant dose for pain with the ability to take more when he moves. The oncologists have consulted infection control doctors, they consulted a surgon. We haven't seen him yet today, maybe in the morning. Hopefully no other infection sites appear and the fever breaks. Monday, September 20, 2004 3:40 PM CDT Hello,,,,,,,Mark went to clinic today and after lab work needed platelets. He received four units and left after lunch. Tomorrow he will go to school. He hasn't been there in two weeks. He is looking forward to it. His teacher has been providing his work and he is on track. Saturday, September 18, 2004 9:27 AM CDT Hello,,,,,Mark is home chemo sickness, all hours of day and night. We will check his labs at clinic on Monday. Until then he is with us and happy. Monday, September 13, 2004 6:42 PM CDT Hello everyone....Mark was admitted today. His labs were good for him, so they started a round of chemo. As of an hour ago he was still in a good mood and not sick. Wednesday, September 8, 2004 4:19 PM CDT Mark is home. The fever broke on Saturday, he was able to move his arm without pain on Sunday. The sling came off Monday. Not as much morphine with this admission. The last three infections all affected muscles (thigh, both thighs, shoulder) our concern is, his heart muscle. We are more worried than ever. The doctors want to continue with his chemo until the protocol is done. We don't know how much his body can take. Saturday, September 4, 2004 9:01 AM CDT On Wednesday Mark went to clinic and received four units of platelets. On Thursday morning, he was admitted with a fever >103 and pain in left shoulder/head/abdomen. The fever broke last night, morphine for pain, two different anti-biotics. The shoulder looks like the previous infections that involved his legs. The doctors say "interesting" but have no answers. We are concerned. Friday, August 27, 2004 3:12 PM CDT Mark was sent home today. His labs had dropped too low. They did not want to give anymore today. He is still accessed, home health was here already. IV meds will continue until he improves or gets re-admitted. Tuesday, August 24, 2004 6:56 PM CDT Hello, Mark was admitted Monday. His chemo dose has been reduced by 1/4. The doctors will decide day to day as to how many doses he will receive based on his lab work. His nausea and vomitting start Monday after the first dose was in. He lost his apetite also, no interest in eating. No leg pain, but the headache is back. He asked if it means he has a "bump" in his head now, it was soo bad. Seven years old and already worried that more tumors are there or coming. Monday, August 16, 2004 4:54 PM CDT Again, Mark went to clinic and had his labs done. His platelet count was only in the seventies. The doctors sent him home. The delay was explained as chemo build up and/or steroid build up in his system. They are now considering different approaches. Half reducing the remaining rounds of chemo, changing the steroid he gets with blood products (ie.blood, platelets) or adding an IV med while at home to stimulate platelet production. Monday, August 16, 2004 4:37 AM CDT Monday morning, when Mark awakes, he will have breakfast. Dress up and leave with packed bags for a week of chemo. His day will start in clinic to check his lab work. If all is right he will be admitted, if not (like last Monday) he will return home. I will update later tonight. Monday, August 9, 2004 2:11 PM CDT Mark went to the beach for a few hours on Thursday and Friday. Saturday night it was a sleep over with his grand-parents. We had our first night out and alone since April. Thursday, August 5, 2004 4:16 PM CDT Hello everyone. Mark had his last doses of IV antibiotics this morning. Went to clinic and his labs were OK. Then he visited his new school teacher with mom. Then they went to the beach for a few hours, something he has not done at all during his summer vacation. He was always been in the hospital and more recently attached to a pump at home. Next Monday morning (missing his first day/week of school) he will start another six day period receiving chemo but before that hopefully have some fun. Thursday, July 29, 2004 6:30 PM CDT It was hard on Mark. His fever didn't break until Saturday. Sunday was the first day that he stood up, out of bed. Monday morning because of his symptoms and lab work we were told that a bone marrow aspiration and ct of his bones were being considered. He had already had x-rays and a MRI of his legs. They were thinking chemo induced Leukemia. We were in shock. Tuesday there was a slight drop in the levels they were looking at and more so on Wednesday. The morphine pump was discontinued Wednesday after almost 100mgs since day of admission. Today they offered, and we accepted, home health with another week of IV antibiotics. We are home, attached to the pump, but home. Thank God. Thursday, July 22, 2004 7:29 PM CDT Hello, it was just Saturday, I wrote Mark was on his way home. He wasn't home long, five days/four nights. Yesterday, Wednesday he was admitted. Unable to walk, in pain (both legs, knees primary sites), fever. He still cannot stand, morphine pump for his pain, fever still there after over 24 hours now. Four units of platelets were infused, different antibiotics running. He has no apetite, vomitting. This is almost the same as May, when he had spent 17 days in-hospital with the bacterial infection. Saturday, July 17, 2004 7:27 AM CDT Hello everyone. Mark was admitted this past Monday for chemo. He was visited by Ronald McDonald during the week. Mark is on his way home as I write. They 1/4 reduced his chemo this week and will until the end because they say he is not tolerating the chemo anymore. Monday, July 5, 2004 2:56 PM CDT Mark had a wonderful birthday. Friends and family joined us for a cookout/pool party, fireworks in the evening. On the 4th, we saw Spiderman 2 with fireworks again in the evening. Today, Mark was at the hospital with bags packed ready for a week of chemo. His platelet count is 72, chemo has been delayed another week.
Friday, July 2, 2004 5:05 PM CDT Hello everyone.......This has been a good week for Mark. Monday he was not admitted because of a low platelet count. He has been home, enjoying himself. There is alot of excitement in the air. Saturday is his birthday. He will be seven. Presents have been bought and wrapped. Guests invited for a small party/cookout. We will not even think of Monday, when he starts his next week of chemo. Wednesday, June 23, 2004 6:42 PM CDT Hello everyone...Mark went to clinic again today, and received four units of platelets. That is 12 in a weeks' time. He will go again on Friday.
Monday, June 21, 2004 3:27 PM CDT Hello everyone....Mark went to clinic today and just as we expected he needed and received four units of platelets and a unit of blood. Home now resting. Wednesday clinic again. Sunday, June 20, 2004 8:44 AM CDT Happy Fathers' Day. It is here at our home. Mark is still fever free, Friday he received 4 units of platelets at clinic. Today, he has new bruises. Monday morning at clinic he will probably get more, but that's OK. He is home with us. Thursday, June 17, 2004 3:18 PM CDT Hello, Mark had labs yesterday. Today he had four units of platelets. Let's see if he can make it the weekend without a fever and admission. Tuesday, June 15, 2004 5:18 PM CDT Hello, Mark went to clinic on Monday and received a unit of blood. He had a good day today, home with mom, resting. Wednesday, June 9, 2004 3:22 PM CDT Mark came home this afternoon. Another round of chemo behind us. His birthday is in three weeks and we are sad to say, we cannot plan on a party. Not yet. If his labs are good, if he has no admissions with fever, he will be in the hospital the week of his birthday. Monday, June 7, 2004 7:30 PM CDT Hello, Mark was admitted this morning for another round of chemo. One thing he is looking forward to is, tonights hockey game, he has been wearing his Lighting shirt most of the time. Saturday, June 5, 2004 1:55 PM CDT Hello everyone. We checked Marks' labs on Wednesday and they were still off. As of now he is scheduled to start his next round of chemo on Monday. The other day (Thursday) I had a conference to go to at Disney in Orlando. Thursday night my wife and son surprised me with bags in hand. I loved it. So did they. On Friday, my wife took him to Animal Kingdom. What a nice time for both of them, spending the day together. Today (Saturday) they left and were home before conference ended. Enjoy your weekend, we will. I promised to take him to the movies on Sunday.
Tuesday, June 1, 2004 5:24 PM CDT Hello, on Monday Mark went to the hospital just to have lab work (a holiday morning without fun). His platelet count was only in the 40s. His ANC dropped nearly a thousand points from Friday. He could not start his week of chemo. He will have his labs checked again tomorrow. Sunday, May 30, 2004 8:49 AM CDT Hello everyone........Mark needed and received four units of platelets on Friday in clinic. We will drop blood sample off on Monday to see where/what he does on Tuesday. The doctors want to start the next round of chemo on Tuesday if the lab work is within normal limits for Mark. Tuesday, May 25, 2004 2:17 PM CDT Thank the Lord God Almighty, Mark came home today after spending thirteen days in the hospital with a bacterial infection. He will continue on two PO anti-biotics at home for a week and stay away from sick people (his ANC is still less than 500). Next Tuesday they want him back to start a round of chemo, it was to have started yesterday. Saturday, May 22, 2004 9:02 AM CDT Today is day ten and still in the hospital. His labs have not improved. He has received twenty units of platelets and two of blood so far. They had taken his morphine drip away a few days ago so at two am and again at six am he woke us (we both slept with him in his room) with leg pain. He was feeling well enough around nine am for me to come home, update this page and now cut the lawn. Please continue your prayers. Wednesday, May 19, 2004 7:09 PM CDT Not much time to up-date page. Mark has been in 7 days now, it is an anaerobic bacteria that settled in his thigh. His fever is gone, the continuous morphine pump is off, as of yesterday he was able to move his leg, there is a noticeable reduction in the swelling. We are still waiting to see his bodys' reaction to white cells when he starts producing his own. Saturday, May 15, 2004 9:09 AM CDT PRAY FOR MARK. He is the sickess yet. Thursday around 3AM he woke us screaming in pain (head and left leg)and running a fever. Since that time he has been on a cooling blanket, morphine drip, currently three anti-biotics. He has had cultures drawn (many) blood work, x-rays, ct, mri. Today an infectious disease doctor will be helping the oncologists. Sunday, May 9, 2004 4:02 PM CDT Mark was able to leave the hospital Wednesday evening. Thursday and Friday he was chemo sick, with the new complaint of a pain in his head. Saturday, we wanted to do something special and we did. It was a day at Disney World, he was very happy. Wednesday, May 5, 2004 4:32 PM CDT Hello, this is a chemo week. Mark was admitted Monday morning and was chemo sick by five pm. Will up date later. Thank-you all for visiting his website.
Friday, April 30, 2004 3:37 PM CDT Hello everyone.....Mark was very happy this week. He attended school four days this week. His K5 class sang for the K4 class. One day was spent with his grand-mother. We have rented a movie and this weekend we'll watch it. He calls it movie night. Make some popcorn and sit together and enjoy. Monday, April 26, 2004 5:56 PM CDT Hello everyone.......Marks' lab work this morning did not allow the start of chemo this week, so he went to school. We were all happy about that. It seems like we have all been depressed these days. Week after week chemo, clinic, lab work, over and over. Bills, tired, worn out. We need a lift, a helping hand. Don't know how to go about it. Any ideas? Sunday, April 25, 2004 7:42 AM CDT Hello everyone.......Mark went to clinic Monday. His labs were good for him. His ANC was >1000 so he was off to school Tuesday thru Friday. We have spoken with his doctors about giving him a break, an extra week with no chemo to make him feel better about everything going on. We should get our answer Monday morning. Sunday, April 18, 2004 9:42 AM CDT Hello everyone.....Mark had an enjoyable Easter. He found all of the hidden eggs. We were treated to a wonderful meal at the "Columbia Restaurant", a gift from the owner. Then he saw a movie at the local theater. Relatives flew in from Baltimore and he spent alot of time with his aunt and uncle from Baltimore. Monday and Wednesday at clinic the labs were OK for him. Friday was a long day in clinic. He needed blood and platelets. His ANC has been zero since Friday but the fever has held off. His complaints are headache and upset stomach. Much easier to deal with than a fever. Tomorrow, Monday he will go to clinic again. No school until his counts are up. Saturday, April 10, 2004 3:13 PM CDT Hello everyone.....Great day today. Mark came home from the hospital. He is at the kitchen table with Mom coloring eggs. There is soo much excitement, looking forward to the Easter Bunny. One of his doctors' today told us in surprise that this was the first admission that they did not transfuse blood or platelets. He was surprised. Tuesday, April 6, 2004 7:33 PM CDT Hello everyone,,,,,,,Yes, Mark was admitted yesterday. Before the day was done he was already chemo sick with no apetite and vomitting. Today was no different. He is already to come home. He needs to decorate eggs and be ready for Easter Sunday. Thursday, April 1, 2004 6:57 PM CST Hello everyone....Mark went to the hospital with bag and baggage on Monday. His platelet count had dropped (not bad enough for transfusion but enough that chemo could not be started). He went to school Tuesday. Wednesday back to clinic all the labs were good for him. He then went to school after clinic and again today. Tomorrow (Friday) he is filming a commercial with Mike Alstott (football player) for the Childrens Cancer Center. Monday he will start his week of chemo.
Saturday, March 27, 2004 10:58 AM CST Sorry for the delay. Mark does keep us busy.
Saturday, March 20, 2004 7:09 PM CST Mark went to clinic on Friday and received 4 more units of platelets. This morning at about 3 am he spiked a fever, the childrens' cancer unit was full and we waited in the ER (all those germs) until 2PM for a bed. He still has a fever at this time. Wednesday, March 17, 2004 2:09 PM CST Hello everyone. Mark came home on Saturday. We all had a happy, quite weekend. On Monday clinic, his labs had dropped. Today his ANC is 0, he also needed blood and platelets. We are packing up now and waiting, temp is 99.8 at 100 it is re-admission. Usually the ANC drop and fever comes on Friday/Saturday/Sunday never before on a Wednesday. We will keep you all up to date soon. Thursday, March 11, 2004 6:42 PM CST Sorry for the delay. Mark has been in the hospital since Monday and I don't spend much time at home when he is there. This is a chemo week, he also had to start with a unit of blood. The vomitting started within hours of the first dose. Monday, March 1, 2004 4:10 PM CST Hello everyone. Mark went to clinic last Monday/Wednesday/Friday and today just labs. Last week he received a total of 12 units of platelets and a unit of blood. He was supposed to have started a week of chemo today, his labs were OK, no platelets or blood needed. He will have this week off to rest because the platelet count is still low, too low to start chemo. Tuesday, February 24, 2004 4:12 PM CST Hello everyone. On Monday Mark spent the whole day at clinic because he needed blood and platelets. Today he stayed home with mom and in the morning they will go to clinic again. His ANC was just over 100 on Monday, so he is in reverse isolation (No school and wears a mask when out of the house). With a platelet count of only 3 on Monday we are pretty sure he will need platelets again in the morning. Thursday, February 19, 2004 6:38 PM CST Thank-you all that visit this site. Mark is our only child, our Love our Life. He was at clinic again today. He received a unit of blood and four units of platelets. His ANC is dropping fast 10,000 on Monday over 4,000 Wednesday, today less than 800. Tomorrow he will probably be zero, with a fever and another admission. Will update soon. Let's pray for our children and all those served by the caringbridge site. Saturday, February 14, 2004 3:49 PM CST Happy Valentines Day. It truly is. Mark is home from another round of chemo. Monday he will go to clinic. His school teacher passed along to Mark a box of Valentines from the staff and many of the grade schoolers attending. Tomorrow we will celebrate his Nannys' (grand-mother) birthday. It is something for him to look forward to.
Saturday, February 7, 2004 11:10 AM CST Monday arrived and he needed platelets. He was not admitted. Wednesday and Friday, his labs were still low but did not need blood or platelets. We are going to have lab work done on Sunday. Monday is to be admission date for another round of chemo. Friday, January 30, 2004 5:44 PM CST Hello, Marks' scans were clean. His labs finally improved enough for his discharge home yesterday afternoon. He is to start another round of chemo (depending on labs) on Monday. Not much time home for fun and games. Monday, January 26, 2004 7:34 PM CST Last week Mark went to clinic on Monday (labs were fair), Wednesday lab work (on the decline), Friday he stayed and received a unit of blood and four units of platelets. He had a miserable night waking up every hour. Saturday at five AM he was running a temp >103, we rushed him into the hospital. The temp never went away, he vomitted so often and so hard there was blood with every episode. At midnight the temp broke. Today he was scanned, we are awaiting the results. He is still in the hospital. Saturday, January 17, 2004 7:22 PM CST Hello, Mark just finished another week of chemo. We were so blessed to have him home for both holidays that we didn't mind this past week. Our batteries, so to speak, had been recharged. We know that he has a full year of chemo left, but it is nice that we can see an end to it. Remember this all started October 2001 when he was four. Saturday, January 3, 2004 5:07 PM CST Hello everyone. We have been blessed with the best holidays. Mark was home for both Christmas and New Years. This was also the first time that he did not return after chemo with a fever. Yes, he had labs three times a week for both weeks. Yes, he received blood and platelets on Christmas Eve, but he left that day with us. We are ready for the next year of chemo. One day at a time. Saturday, December 27, 2003 9:38 AM CST Happy holidays. Mark had labs drawn Monday, Wednesday and Friday. Wednesday (Christmas Eve) he was in the day hospital until 4:30PM, a whole day spent receiving a unit of blood and four units of platelets. He did get to come home and wake up to find Santa Claus had come. Our Christmas wish had been answered. His labs as of yesterday are very low, with an ANC barely over 100, the fever is near. Saturday, December 20, 2003 10:58 AM CST Mark came home this morning. Hopefully he will stay home for Christmas. We are very worried about it, but will do what we always do, take one day at a time. Make him as happy and safe as we can, turn on the Christmas tree lights and wait.
Monday, December 15, 2003 6:45 PM CST Hello everyone.......Mark was admitted today for a week of chemo. We set up a small artificial tree in his room and decorated it (no lights allowed per hospital policy). Monday, December 15, 2003 6:45 PM CST Hello everyone.......Mark was admitted today for a week of chemo. We set up a small artificial tree in his room and decorated it (no lights allowed per hospital policy). Monday, December 8, 2003 1:53 PM CST Marks' counts were not high enough for admission. His chemo week will not start until next Monday. Which means his fever will come Christmas week. If it is like his last fever, admission will be on Christmas Eve. We are soooo upset. Our prayers are for no fever that week or the day after Christmas. Thursday, December 4, 2003 5:01 PM CST Hello, sorry for the delay. Mark came home Monday, yesterday was clinic/labs, low but didn't need blood products. He just left with mom and nanny for a meeting/fun at the Cancer Center. Monday he is scheduled to start another week of chemo. Hopefully, he will, otherwise if it is postponed a week so will his next fever. That would be on Christmas. Friday, November 28, 2003 4:23 PM CST Hello all. Picture is of Mark (and parents) sitting on Zamboni at recent Lightning game. He had been released last Saturday hours before the game. This Wednesday he was again admitted with a fever. That was only four days home. His time at home gets shorter and shorter. Thanksgiving dinner was cafeteria style (yuck). Today, he received four units of platelets and a unit of blood. Thank-you all for signing his guest book. Saturday, November 22, 2003 12:35 AM CST Hello everyone.........Good news. Mark just got home after his week of chemo. He feels good right now. We are going to the Lightning (hockey) game later with the Childrens Cancer Center. He is suppose to ride on the Zamboni tonight. Hope to have his pictures uploaded tomorrow.
Monday, November 17, 2003 7:03 PM CST Hello everyone. Mark was admitted this morning for another round of chemo. Hopefully if all goes well he will leave Saturday morning sometime. He had a wonderful weekend. One of the highlights, saturday he was guest of honor at Richards Race for the Cure. He started the race and had a great time. Monday, November 10, 2003 3:44 PM CST Hello everyone.......the good news is Mark gets a week home, his platelet count is too low to start chemo. THE GREAT NEWS is the surgeons' practioner accessed his mediport, got a blood return and it flushes. No surgery is needed. Saturday, November 8, 2003 12:16 AM CST Hello everyone....On Thursday evening Mark ran a temp. He was admitted by 6PM. At 4AM, they drew his labs from his Mediport. But, could not clear the line. So his port was accessed at that hour for second time. Still did not work. They used TPA four times in the following 12 hours and changed the needle again. A surgeon was consulted to remove the port and to give him a new one. They think it will be done Tuesday because they had no time on Friday and cannot be done on weekend because it is not an emergency. He was given an IV. Today we insisted on his coming home. His fever is gone the labs are fine. There is no reason to wait until Tuesday for surgery. Not in the hospital. The oncologist wants to start chemo soon. He is due on Monday. We will bring him back on Monday morning and find out which is first, new port or chemo. Tuesday, November 4, 2003 4:37 PM CST Hello everyone. Mark had a great weekend. Monday was not so good. His labs were poor. He received a unit of blood and four units of platelets. He spiked a temp when the blood started and the doctors wanted to keep him. By four PM the temp was gone and he came home with us. No further temp since that time, but our bags were packed and are still by the door ready to go. Tuesday, October 28, 2003 5:23 PM CST Hello everyone. Marks' labs on Monday were good. He was at school two days in a row now. The school did call this morning to say he had walked into a door and had a bruise on his forehead. Just one more on his body. Lab work again tomorrow and school. We have high hopes for the weekend. Friday for trick or treating (he will be the Hulk). Saturday for a hockey game (Lighting 6-0 record, should be good game, tickets provided by the Childrens Cancer Center). Sunday will be a football game, the Bucs. Tickets given to us by a very good Doctor and his family. They are the same people that arranged for his visit with the Bucs at their practice field.
Sunday, October 26, 2003 8:25 AM CST Hello everyone.......knock on wood, Mark came home already and even made it to the Halloween party at the Childrens Cancer Center. On the way home he said he had such a good time. We were happy for him, even though we were all too tired to go. It will be clinic on Monday with labs (of course). And then day by day, as always. Monday, October 20, 2003 7:45 PM CDT Hello everyone...Mark had a good weekend. First, we went to ZooBoo on Friday night and yesterday to a movie (the dog that talked from outer space, gee,,, I don't remember the name of the movie,,LOL) he loved it. We enjoyed watching him. Today he was admitted to the hospital for another round of chemo. Monday, October 13, 2003 3:14 PM CDT Hello everyone.........Mark was again at clinic today waiting for admission. His labs were not up to it. He received a unit of blood and was sent home. Sunday, October 5, 2003 8:49 AM CDT Hooray, Mark was released from the hospital at 3pm on Saturday. During his week stay for his fever, he received a total of 20 units of platelets and one unit of blood. We all slept so well last night in our home, in our beds. He will have labs at clinic on Monday, but he is home. Thursday, October 2, 2003 8:03 PM CDT Hello, Mark is still in the hospital. No fevers, no need for transfusions, labs are all borderline. ANC rose from 50 to 100. Cross your fingers, and say your prayers. He needs 500 or better to get released. Monday, September 29, 2003 7:28 PM CDT Mark had a bad night. After his admission yesterday he did receive four units of platelets and his fever jumped from 103 to 105.6.....At 12 midnight, for nearly an hour, his mother cooled him off with water/in water. His fever broke. But, he started to bleed from his mouth (blood blister had formed and were breaking). Today he received a full unit of blood and another four units of platelets, with no reaction (ie. fever). He will have a full body scan in the AM, just because he is there and his six week scan is almost due anyhow (so the MD says, because we asked if they were looking for more than what they are saying). Monday, September 29, 2003 3:29 AM CDT Don't have but a minute. Mark was admitted Sunday afternoon with a fever 103+, sometime overnight he was to receive a unit of blood and four units of platelets. This is new. He has never had fevers with this round of chemo. Wednesday, September 24, 2003 6:40 PM CDT Hello, Mark went to clinic today and received one unit of blood and four units of platelets. Then he visited with his grampy, who was admitted for a mass on his right lung. We are all waiting for the results of those tests. Saturday, September 20, 2003 11:13 AM CDT Hello everyone.....Mark is home. Still is bothered with the chemo sickness (vomiting), but happy to be home. WE all are. Wednesday, September 17, 2003 4:28 PM CDT Sorry for the delay. Mark was admitted Monday morning for another round of chemo. The chemo sickness started a few hours after the infusion began. Will update when we can. Wednesday, September 10, 2003 6:01 PM CDT Hello, I tried adding a journal update yesterday, but had difficulties. Monday, Mark went to the hospital with bags packed. His platelet count was too low to start chemo. When he hear that he jumped off of the stretcher and started skippy out of the clinic. One of the oncologists, called to him. He said "you need to stay here until the platelets are better". Mark continued out and said "I'm out of here". He was grining ear to ear. I have added pictures from recent admissions. He will be admitted next Monday to start a week of chemo. We do our best to keep him a happy child under the conditions we have to live with. Tuesday, September 2, 2003 3:38 PM CDT Hello everyone.......Mark came home yesterday. No more fever and ANC is over 500. He has a better apetite now that he is home. The new picture on his front page was taken this weekend in the hospital. Besides going to clinic on Thursday he is scheduled to start another round of chemo Monday. Back in the hospital. We counted just eigth days that he was not an in-patient or at the clinic in the month of August. Friday, August 29, 2003 7:36 PM CDT Hello everyone.......Today around 10am, Mark was re-admitted to the hospital with a fever, nausea and vomitting. His ANC is ZERO. And after four units of platelets yesterday with the blood, his platelet count is only 37. He was sleeping when I just left him with his mom (my wife). Please continue to pray for him.
Thursday, August 28, 2003 5:54 PM CDT Hello everyone. Mark went to clinic today. He spent the entire day there. After lab work, he received a unit of blood and four units of platelets. We just finished playing checkers, eating supper and bathing. Time to rest. Sunday, August 24, 2003 9:42 AM CDT Hello everyone.......Mark came home yesterday, after a week in the hospital receiving chemo. He is feeling good today and ate his breakfast well. He just left the house with his mom (my wife) to visit with her parents. His Nanny and Grampy. Then it is off to the store to buy a new fish. The current surviving fish ate the others in the tank. Quess it was hungry. Monday, August 18, 2003 7:46 PM CDT Hello everyone. Mark was admitted today for another week of chemo. We can only hope that he tolerates it. As of tonight he had already lost his apetite and has nausea. Monday, August 11, 2003 5:15 PM CDT Hello, Mark was not admitted today. His platelet count is too low. Not low enough that he needs any, just not high enough to start chemo. We had hoped to take Mark to the beach over the weekend but as many around here know, it rained. Instead, we went to the museum (MOSI)in Tampa. He enjoyed himself but was worn out. We took turns holding and carrying him around. Thursday he will have more lab work, hopefully things will be well. Saturday, August 9, 2003 8:18 AM CDT Hello, Mark recovered from his fever (after receiving a unit of blood, four units of platelets and antibiotics). He left the hospital Monday and this coming Monday needs to return for another week of chemo. This past Thursday we made it to the Childrens Cancer Center in Tampa. He enjoyed his time there and asked to go more often. Also on Thursday he went to a pediatric dentist. He complained that his teeth were hurting while at the hospital last weeked. Sure enough, two of his baby teeth (he still has them all) needed to be worked on. Several hours later and two crowns, he left the dentist. There are more that need filings but not as bad as those two. Saturday, August 2, 2003 9:06 AM CDT Hello, Mark went to clinic Monday and Thursday. Yesterday, Friday he spiked a temp and was admitted. Last night they infused blood,platelets and antibiotics; took blood for cultures/labs, swabbed his throath, checked his urine. This morning started off with a chest x-ray. His ANC (white count) was 0 yesterday and this morning. Please continue to pray for him. We hope everyone signing the guest book understands if we don't get back to you with thank-you. Sunday, July 27, 2003 9:39 AM CDT Hello everyone........Mark came home from the hospital Saturday. On Thursday they found traces of blood in his urine (one of the chemo side effects), the following day they transfused one unit of blood. He is tired, we do our best to feed him when he is not sick. On Monday he will return to clinic. On a personal note. We (his parents) cannot understand all of the organizations out there that offer services to cancer patients and their families. From Social Security Services all the way down the line. There is no financial aid for anyone that still tries to maintain a job (as in our case, I continue to work and try to make ends meet, while my wife spends all of her time with our son). Her full time income that was counted on is no longer there and has not been there since Oct 2001. It appears that unless we are living on the street their is no organization that will help financially. The worst part is our son has chemo treatments until December 2004. That is another year and a half of money related problems. Monday, July 21, 2003 8:01 PM CDT Hello everyone. I wish I had time to write to all that have signed the guest book. Mark was admitted this morning for another week of chemo. Within hours the vomitting started. Wish him well. Thanks again to all visiting his page. Friday, July 18, 2003 5:38 PM CDT Hello everyone, sorry for the delay. Neither of us have had time to sit at computer to update. Mark went to clinic this Tuesday and needed no blood or platelets (yeah). On Monday he is to be admitted for a week of chemo. Thursday, July 10, 2003 2:50 PM CDT Hello everyone........Mark has had clinic Monday and Wednesday this week and will again tomorrow (Friday). On Monday he received four units of platelets and a unit of blood. He also had his six week scheduled x-rays and scans. It was a nine hour day in clinic. Wednesday was quicker. He received four units of platelets that day.
Friday, July 4, 2003 12:24 AM CDT Yesterday, July 3rd, Mark celebrated his 6th birthday. He also went to clinic and needed a unit of blood. A poor way of spending his birthday, but family came over for dinner and we enjoyed fireworks in the evening. Happy 4th of July.
Wednesday, July 2, 2003 5:35 PM CDT Hello everyone.........Mark went to clinic Monday and all lab work was fine. He turns six tomorrow but still has to go to clinic. A few friends will joins us Saturday to celebrate his birthday. We will keep you all in our thoughts. Friday, June 27, 2003 3:16 PM CDT Hello everyone and anyone visiting Marks' site. He was admitted on Monday for chemo and came home Thursday. We are crossing our fingers and waiting for clinic on Monday. His birthday is next week and we would like to have him home and not re-admitted for any reason. He will turn six. YEAH,,,,,,,,,,, Sunday, June 22, 2003 8:42 AM CDT Hello everyone. Mark was packed and ready for admission into hospital on Monday, but the labs were not good. Then on Wednesday he went and needed another unit of blood. Tomorrow we will pack his bags and start another full week of chemo. Wish him well. Friday, June 13, 2003 3:11 PM CDT Hello everyone.....Mark went to clinic and received four more units of platelets today. That is 12 units since Monday, plus the unit of blood. His body is covered with bruises. It breaks our hearts that chemo does what it does to him. Thursday, June 12, 2003 4:16 PM CDT Hello all. Mark went to clinic Monday and Wednesday. Monday he received one unit of blood and four units of platelets. Wednesday he received another four untis of platelets. He has clinic again in the morning. Next Monday should be the start of another week of in-hospital chemo. But as we all know (those families with children that have cancer) until that day arrives, we can't count on anything. One day at a time is too frequently one hour at a time. Wednesday, June 4, 2003 4:24 PM CDT Hello all. Sorry for the delay. Mark came home on Friday and has been sick everyday. Today was clinic and his labs were OK, next clinic day will be Friday. We brought him to see "Finding Nemo" on Sunday. He loved it. If feels good to see him happy, not just sick. Wednesday, May 28, 2003 6:10 PM CDT Hello everyone,,,,,,,,,,Mark was admitted Tuesday for a week of chemo. Today he received another unit of blood. He developed a rash after the infusion. He has never reacted to a blood transfusion before. Labs were drawn. We are awaiting the results. Sunday, May 25, 2003 5:36 PM CDT Hello all. Mark came home Monday. He has remained out of the hospital this week. Tuesday he will be going back in for another week of chemo. Saturday, May 17, 2003 7:31 AM CDT Mark has not had a good week. We barely took him home last saturday and he was re-admitted Friday. He had one day, Wednesday, where he felt well enough to go to shcool. We felt terrible about letting him go, because, he also had clinic and labs after. His ANC was zero on that day and still is as of this mornings labs. He needs more blood, and will get it today. Saturday, May 10, 2003 3:50 PM CDT Hello everyone. Mark is home as of today. He was admitted Monday and received a week (five days) of chemo and topped him off with a unit of blood last night with the hope that he will stay out of the hospital for another week. Friday, May 2, 2003 4:18 PM CDT Sorry for the delay. Mark was discharged from the hospital Monday morning. His clinic day was un-eventful (thank goodness). Monday morning he will be admitted (if the lab work allows) for another full week of chemo. Saturday, April 26, 2003 9:47 AM CDT Mark was re-admitted yesterday. After being home for only six days. And two of those days were clinic. His fever, headache, bone pain sent us packing. His labs had dropped just from thurdsday. They have already given platelets and now more blood. Hopefully, he will be out in just a couple of days.
Sunday, April 20, 2003 10:36 AM CDT Happy Easter to all. It is for this family. Mark is home. He just spent a week in the hospital receiving chemo and in the end another full unit of blood. The chemo sickness started after the first day and still continues to this moment (all of his breakfast). But, with a smile, he shook it off and is playing in his room. We are thankful for his happiness and the kindness of others that think of him. We up-loaded a new picture taken this past week. Because he was in isolation (low ANC) the Easter Bunny and friend visited with him, keeping their didstance. Wednesday, April 9, 2003 6:29 PM CDT Hello everyone, Mark was at clinic again last friday, monday and again today. He received four units of platelets and a unit of blood today. The vomitting started at the end of the infusion. His bruising is terrible, it is hard for us, he is not bothered by it. We bring him to clinic again friday. Sunday, April 6, 2003 10:02 AM CDT This past wednesday Marks' hgb was 8 and did not need more blood, BUT he did need 4 more units of platelets. His ANC on that day had risen to about 400, still not ready to mingle with others. Thursday he (with mom and dad) went to The Childrens' Cancer Center to meet with Mike Alstott and his wife. Friday there were more labs and NO need for any blood products. All of his bruising seems to be fading. Monday was to be the start of another in-hospital chemo week but the doctors want him to have another week to recooperate. Right now he just finish his pancakes, saugages and ham (what he could eat, not as much as we would like).
Monday, March 31, 2003 6:54 PM CST Hello all. Mark went to clinic last thursday, everything was low and didn't require blood products. So we let him go to school. A few hours later that same day, the school called. He was vomitting and complaining of leg pain. (while waiting to be picked up by us, the school had a fire drill. Because he attempted to be like the others and was seen skipping, the school nurse made the comment that it didn't look like he was in pain. Un-believable, a nurse not knowing the side effects of chemo and the phycho-social aspects of a five year old.) We naturally took him home and kept him home the following day. Monday, March 31, 2003 6:54 PM CST Hello all. Mark went to clinic last thursday, everything was low and didn't require blood products. So we let him go to school. A few hours later that same day, the school called. He was vomitting and complaining of leg pain. (while waiting to be picked up by us, the school had a fire drill. Because he attempted to be like the others and was seen skipping, the school nurse made the comment that it didn't look like he was in pain. Un-believable, a nurse not knowing the side effects of chemo and the phycho-social aspects of a five year old.) We naturally took him home and kept him home the following day. Monday, March 24, 2003 4:27 PM CST Hello all. Mark was at the cancer clinic today for labs. Arriving shortly after seven am. His Hgb was less than eight. He needed blood. So he stayed and they transfused a unit of blood. He is pale but not vomitting today. We left around one pm. Saturday, March 22, 2003 11:22 AM CST Mark is home. He is still chemo sick, the vomitting and fatigue. We are all happy to have him home. Monday he will have labs and see where he stands. In February he received four units of blood and three units of platelets. Will update again soon. Saturday, March 22, 2003 11:22 AM CST Mark is home. He is still chemo sick, the vomitting and fatigue. We are all happy to have him home. Monday he will have labs and see where he stands. In February he received four units of blood and three units of platelets. Will update again soon. Sunday, March 16, 2003 9:07 AM CST Hello everyone. Mark is going into the hospital in the morning for another week of chemo treatments. This past week people at work had a bake sale for Mark, the proceeds were sent to the childrens cancer center (Mark's Angels). www.childrenscancercenter.org Sunday, March 9, 2003 2:01 PM CST This page has just been created.
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