| Updates On Saturday June 16, 2000, we had to start giving Owen shots at home. This is due to his white blood cell count dropping too low. The Neupogen shots are given daily for six days following chemo. June 28, 2000 Owen had a CT of the head and a skeletal survey. July 3, 2000 Results - All of the previous lesions have nearly vanished. There is a new lesion that is approx 9mm x 9mm in diameter on the right side of the skull. July 4, 2000 Spoke with Owen's primary doctor while at the hospital concerning the new lesion. He plans to continue with the current chemo of 2CDA and do another CT scan in six weeks. August 11, 2000 Had a CT of the head done. The radiologist said she took a quick look at the scan and the new lesion that was found last time appears to be shrinking and no new lesions. We will get the final report next week. August 14, 2000 Went to the clinic to start this weeks chemo. His lab counts were too low so it is on hold until next week. We did get the final report of the CT scan. The new lesion had improved and there are no new lesions. August 21, 2000 Went to the clinic for this weeks chemo, but his platelet count was too low. It was 39. They usually transfuse when it gets between 15-20. We go back next week to try again. August 28, 2000 The doctor said if Owen's platelet count was at least 50 then the chemo would be administered this week. Well, it came back at 49. The doctor chose to go ahead with the chemo, but he felt this would be the last week of 2CDA. The plan is to go back on Vinblastine weekly then taper for at least 3 to 6 months. Owen had a good week with no complications. September 11, 2000 Spoke with Kristen, Owen's nurse, about todays lab results. There is still a concern about the platelets being low. Today they are at 35. It is possible they will continue to drop, we will just have to wait and see. He will have it checked again in three days. Owen is scheduled to start Vinblastine next Monday, but will discuss with Dr. Sandler holding off until the first of October if possible. September 21, 2000 Owen's platelet count is down to 24. He had his first platelet transfusion today. He had no adverse reactions and it went really well. It took approximately an hour to complete. His white blood cells are really low too so he starts three days of Neupogen shots. (We leave for Owen's dream trip tomorrow.) October 3, 2000 Owen went for chemo, but his platelet count was too low. It was at 21, and they want to wait and see if it continues to drop before doing another transfusion. He will have it checked again on Friday. If it has dropped, then they will probably do the transfusion and chemo then. October 12, 2000 Owen's platelet and white blood cell count is still extremely low. Today, a bone marrow biopsy was done. Owen did really well (We went to Hooters for lunch when he woke up!!). The doctors will discuss on Monday what to do next pending the results of the biopsy. They are still holding off on chemo until the counts go up. We should have the results next week. October 17, 2000 We got the results of the bone marrow biopsy. They did not find anything, so they are hoping that his lab counts will recover on their own. He will get them checked again and possibly go ahead with a platelet transfusion because we are going to a family retreat this weekend sponsored by the CHILD Cancer Fund. October 30, 2000 Owen's lab counts are still too low for chemo, but he has not had to have another platelet transfusion. He will drop back to once a week checks on the labs instead of twice a week. November 1, 2000 Owen had his first blood transfusion today. It went really well, and he had no adverse reactions. He will get labwork again on Tuesday. November 10, 2000 Owen had his second platelet transfusion. He had a reaction to it and they had to administer Benadryl. Later that evening he had a slight fever, but it went away on its own. For the next three days he will have to get Neupogen shots to stimulate the white blood cells. November 13, 2000 Owen's nurse advised us that he will start getting monthly breathing treatments beginning this week. He will do this instead of taking Bactrim(antibiotic) three days a week to keep his lungs clear. The reason for taking him off the Bactrim is because it might be suppressing his lab counts. November 16, 2000 Owen had his first Pentamadine breathing treatment. It went very well. He had no problems with it other than he said it tasted "yucky." November 19-20, 2000 Noticed after Owens bath that he had broken out in hives. He was given a dose of Benadryl, but this did not seem to resolve. Called the doctor and he said to give an additional dose of Benadryl. By morning, Owen looked worse. I took him to the clinic so they could take a look and to get his lab counts checked. His platelets were at 10. They premedicated him with Tylenol, Benadryl, and steriods before starting the platelet tranfusion. The hives have not gone away. We will have to keep an eye on them for the next 24 hours. The doctor also instructed us to give daily Neupogen shots to stimulate the white blood cells. November 22, 2000 CT scan of the head and blood transfusion. He is still breaking out in hives at least once a day. November 27, 2000 He had a platelet transfusion and the allergy doctor prescribed him something for the hives. November 30, 2000 Owen went for the bone marrow biopsy. The doctors heard a "crackling" in his chest and decided to do a chest x-ray before starting the procedure. He had a ruuny nose and had been coughing for the last week. The anethesiologist chose to move him to the operating room to do the procedure instead of the holding room where it is usually performed. The preliminary report is that the biopsy is NORMAL. We went home and then Owen started running a fever. We called the clinic and they had us go to the ER. The main reason being that his white blood cells were low and they were concerned with infection. A blood culture was done and an antibiotic was given. Then we checked into the hospital for the night. They continued antibiotics the next day and then he was released. December 6, 2000 Owen had a platelet transfusion. It went well. December 12, 2000 Owen had a platelet and blood transfusion. It was a long day, but he tolerated it well. December 19, 2000 Owen had a breathing treatment and a platelet transfusion. December 26, 2000 Platelet transfusion. December 29, 2000 Another platelet transfusion done at the hospital since the clinic was closed for the holidays. He had a slight reaction. December 30, 2000 Owen had a blood transfusion. The nurse was unable to get the transfusion to run through his port-a-cath so an IV had to be started in his hand. January 5, 2001 A dye study (xray) was done to check Owen's port-a-cath for a clot or blockage. They didn't find anything so we are unsure why there is a problem when trying to infuse blood products. January 16, 2001 Owen had his breathing treatment at the clinic. His platelets are holding at 25 so it's been 2 weeks since his last platelet transfusion!!!! We are hopeful that this is the start of them trying to return to normal. January 18-19, 2001 Owen's preschool (Noah's Ark) is sponsoring a blood drive. There was a great turn out for the blood drive. Owen has approx. 57 pints in his account with the FL/GA Blood Alliance. January 23, 2001 Owen saw Dr. Sandler and had his port-a-cath flushed since he has not had a transfusion in 4 weeks. Dr. Sandler is pleased that the platelets are stable. He is continuing Neupogen shots twice a week to keep his white blood cells up. February 1, 2001 Owen's platelets are stable. They are holding at 25 (normal range is 150-300). February 7, 2001 Owen started running a fever so Dr Gauger said to take him to the ER so they could run blood cultures and labs. His labs were ok so they administered Rocephin (antibiotic) intravenously and sent him home. He is doing fine. February 10, 2001 Owen and Bryan were at the Boat show in Jacksonville when Owen had a nosebleed that would not stop. They went to the ER and labs were done to determine how low his platelets were. It was decided that he needed a platelet transfusion so he was admitted to the Children's Hospital. Labs were ran again and he had lost a significant amount of blood so a blood transfusion was done prior to the platelet transfusion. He was released the next morning. February 13, 2001 Owen had his monthly breathing treatment. All went well. February 28, 2001 Owen had a CT scan of his head and a skeletal survey done. The CT scan showed NO lesions! We should have the results of the skeletal survey (approx 21 xrays) within the next few days. He also saw Dr Sandler and a bone marrow biopsy has been scheduled for the end of March due to his platelets and white blood cells still being extremely low. March 13, 2001 Owen had his last breathing treatment!! He has also had 4 nose bleeds in three days so while we were at the clinic, he saw Dr. Pitel and he referred Owen to the ear, nose, and throat (ENT) doctor. Owen was able to get in right away. The ENT cauterized a blood vessel in each nostril. (Cauterization involves using a heating device to burn the vessel so that it stops bleeding.) Unfortunately, Owen had another nose bleed that night. March 16, 2001 Owen returned to the ENT because the nosebleeds began to get worse. He said there was really nothing else that could be done until his platelet count went up. March 26, 2001 Owen's platelets were down to 13 so a platelet transfusion was done. March 29, 2001 Owen had a bone marrow biopsy and is doing well. Hopefully, we will have some results next week. April 16, 2001 As far as we know, nothing abnormal was found on the biopsy. The doctor wants to talk to us about the results and starting Owen on Neumega shots to stimulate his platelets on Friday (4-27). April 27, 2001 Owen received a platelet transfusion and we spoke to Dr. Sandler. He wants to start Neumega shots daily to see if they will help stimulate the platelets. He has only tried it on a few patients and has not been impressed with the results, but he felt it was worth trying. He is going to consult with Dr. Weitzman, she is the doctor who wrote the 2CDA (chemo) protocol that Owen was last on. He wants to see if she has ever had a patient that is having the same problem with lab counts not recovering. May 1, 2001 Dr Weitzman nor Dr McClain has had a patient with labs not recovering within 8 months. They agreed with Dr Sandler that it was worth a try to start Neumega. May 7, 2001 Owen received his first shot of Neumega. He will continue to take it daily for 14 days. May 8, 2001 He woke up with a slight fever that went away on its own. He also went to the hospital for a skeletal survey. Should have the results by the end of the week. May 12, 2001 Owen woke up around 5am with a nosebleed - so much of the blood had already drained into his stomach which made him throw up quite a bit of blood clots. We took him to the ER. They admitted us to the hospital by 10:30am and started the platelet transfusion. Even after the transfusion had completed, Owen's nose continued to bleed. The blood transfusion was started over a three hour period. The doctor checked his labs about four hours later and then gave us the choice to stay for the night or go home. We all decided to go home since Owen seemed to be doing much better by then. May 21, 2001 Owen will no longer be taking the Neumega shots. They did not increase his platelet count at all. Skeletal survey - no new lesions were found. CT scan is scheduled for 5-29-01 May 29, 2001 Owen had a CT scan of the head and neck - no new lesions were found. He also saw Dr. Pitel, but no new information was received. He said that this could go on another year - they just don't know. August 3, 2001 Owen had another CT scan and skeletal survey. Hopefully we will get some good results next week. August 10, 2001 All results are in and there are no new lesions!!! August 18, 2001 Owen was running a fever so we called Dr. Sandler. He said Owen still has to go to the Emergency Room when running a fever over 101 since he still has a port-a-cath inserted in his chest. We arrived at the ER and they checked his labs and ran cultures. He was given IV antibiotics and sent home. August 19, 2001 Owen had to go back to the ER because he was still running a fever. He had to get another dose of IV antibiotics. The fever did not return after that. His platelets continue to be quite low but stable and not requiring transfusions. September 26, 2001 Owen started running a fever so he had to go to the clinic for IV antibiotics. He also started having diarrhea that was pure blood. To stop the bleeding, he had to have a platelet transfusion. He was admitted to the hospital for two days to determine the cause. He had a fissure that caused the bleeding and due to low plaelets it wouldn't stop. October 23, 2001 Saw Dr. Pitel for a regular visit and he wants to run some additional lab work because Owen's MCV count (size of red blood cells) is a little high. Owen is also scheduled for a bone marrow biopsy on 11-8-01. October 29, 2001 Owen started having a nosebleed. I was not able to stop it so we had to go to the ER. He was admitted to the hospital for a platelet transfusion and additional meds that should help clot the blood. He saw the ENT (ear, nose, throat doctor) on Tuesday before being discharged. There is not a whole lot the ENT can do until his platelet count goes up. She just said to continue to keep his nose moist with nasal spray and bacitracin ointment. November 8, 2001 Bone marrow biopsy was done. The final results are in and it was normal. February 2, 2002 Went to the Emergency Room for fever. February 4, 2002 Had a CT scan and skeletal survey. No lesions were found!!!!!! February 5, 2002 Surgery cancelled for the removal of the port a cath due to the fever over the weekend. March 1, 2002 Surgery REMOVED THE PORT A CATH This was such a milestone. His platelet count had to be at least 50 or a transfusion would have to be done. The were 52!!! The surgeon felt ok with this so NO TRANSFUSION!! We were thrilled - this is the highest his platelets have been on their own without a transfusion. May 21, 2002 Owen continues to do well. He had a checkup with Dr. Pitel and everything looks good. His platelets are 57! They are still going up even though it is very slow we are happy. August 5, 2002 Owen had a CT scan, skeletal survey, and labs done at the hospital. August 27, 2002 Owen saw Dr Sandler and he confirmed the GREAT news that no new lesions were found and platelets are stable at 61. Owen does not have to go back for scans/x-rays for a year!!!!! January 24, 2003 Owen had not been feeling well all week and had at least 3 nosebleeds. We were headed to the ER when Owen said "my heart is beeping". That means that it was going too fast. We went to the firestation and his heart rate was 240! They said he needed to be taken to the ER by ambulance. They started an IV to hydrate him to see if this would help, but after several hours of fluids his HR was still high. They had to give him something to bring it back to normal. He was diagnosed with SVT. (Supraventricular tachycardia) He will be having a catheter ablation on February 10 to resolve the problem. Later that evening, around 8PM Owen started having a nosebleed that could not be stopped. We went back to the ER, he was transferred to the hospital around midnight and a platelet transfusion was administered. It completed at 4:30AM We left the hospital at 6AM, arrived home at 7AM, and Owen's 6th Birthday Party at the Bowling Alley started at Noon. You would not have believed he had been at the hospital the night before. He had a GREAT time at the party. February 10, 2003 Owen had the catheter ablation done-everything went well. He did have to have a platelet transfusion prior to the procedure. July 29, 2003 Owen had his yearly CT scan and skeletal survey. No new lesions were found!!!!!! June 16, 2004 Owen had his yearly visit. His platelets are up to 92,000!!!!! He no longer will need a head CT scan. He is scheduled for a skeletal survey next week. December 2004 Owen had his 6 month lab check up. The platelets are back to 62,000. They believe the last count was an error. August 2005 Owen had his yearly skeletal survey and lab work. We are excited that everything looks good and platelets seem to be on the rise. |
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