Evan went through his first leg of the second round of chemo over a week ago and did fairly well. This leg is the nasty red devil and white lightning and usually causes him rounds of vomiting and little appetite. It wasn't so this time as the doctors and nursing staff decided to give him Marinol for the nausea since he has demonstrated ability to swallow pills. Marinol is a synthetic marijuana and is given to cancer patients to suppress nausea and stimulate appetite. It is not available in liquid or injection form and this is why he has not had this drug to date. This drug was a miracle to him as he was actually hungry throughout the duration of the administration of the chemo. He was not nauseous and he actually was up and about as if the chemo was not taking place. He was obviously "high" and was dealing with the munchies but it was a relief to see him dealing with the chemo is such a different way. The chemo drip lasts for 48 hours and was over on Saturday evening and he actually was discharged immediately afterwards. I usually don't pick him up until Sunday or Monday as he is kept for observation due to the vomiting episodes. I ask all persons reading this in Florida to go and vote for the amendment to legalize marijuana for medical use in November and to ask people living in other states that have not yet decided to legalize marijuana for medial purposes to support the legalization if it should arise in your state. Sick people that could benefit from marijuana usage should be able to have this drug legally.
We were expecting Evan to have good ANC and white and red counts due to the great response he had to the chemo because of the Marinol use; we were quite wrong. Evan needed to have a transfusion on Friday 05/23/2014 due to his red count being so low and platelets on Tuesday 05/27/2014 as the platelet count had tanked as well. His ANC even with the neupogen injections was 13 dangerously unacceptable, but there was nothing to do but wait until his body begins to produce baby white cells. On Tuesday Meghan was given more neupogen to give to Evan to assist in stimulating his white cell production. She mentioned to me that he was in quite a bit of pain when she administered the injection and we both felt it was due to the number of injections currently. On Wednesday Meghan sent a text to me stating (somewhat in a panic) that the syringe seemed to have too much neupogen in it. She remembered that the amount should have been much lower in the syringe and she stopped giving the injection at about the half way mark. I insisted she contact the clinic even though it was after hours and it was confirmed that the amount in the syringe was indeed about three times what it should have been! He was supposed to be receiving .33cc of neupogen and he had received 1cc instead. The nurse assured her that this error was not going to cause any ill affects but to come to the clinic on Thursday for blood counts instead of Friday. Meghan took him to the clinic on Thursday and his counts were much better; his ANC levels were about 1200, not great but out of the danger zone. The doctor on duty was surprised to see Evan there a day early and inquired as to why and when he found out what had happened, he took the remaining syringes and quickly marched to the pharmacy where I am sure there was quite a candid conversation. The pharmacist responsible for the error referred to an older order from March that did direct for 1cc of neupogen because of the impending bone removal at All Children's hospital. There was a newer order for the return to .33cc that he failed to see. The doctor was impressed that Meghan had caught the error and she told him she had a good teacher who had impressed upon her to check everything as a backup.
Evan will return to the clinic on Monday on 06/02/2014 for further blood counts and will have the second leg of the second round started on Thursday 06/05/2014 if his ANC stays above 500. I will write next week and let you know how he is doing.
Friday, May 30, 2014
Monday, May 12, 2014
5/12/2014
Yesterday marked the end of round 1 for Evan's post chemo treatment schedule. He did a great job of clearing the methotrexate by early Sunday morning but his release from the hospital was delayed by 5 hours because of an overly cautious Doctor. Even though the delay was frustrating it was in Evan's best interest to make sure the levels were low enough to ensure he would not have any problems at home. Evan was still able to enjoy the rest of Sunday afternoon with his brothers, sister and dad and I am sure they had a great time celebrating Mothers day with everyone there instead of in different places.
There will be another 3 full rounds of Chemo at the very least before Evan can be determined NED and we are hoping that the holidays will be another milestone in Evan's journey that allows him to be free of the cancer. We are all aware that we must be vigilant afterwards and have frequent scans to make sure that the cancer stays away and be ready to fight aggressively should it return.
After I picked up Meghan, Evan and Matthew on Sunday we took a little detour to the Ronald McDonald house which in on the Health Park Campus. I have been donating food and other necessities to the house over the past few weeks as a way of paying it forward to others in similar situations that are not as fortunate as we are to be so close to the hospital. Ronald McDonald houses across the country make sure that parents of hospitalized children have a safe place to stay during their stay in the hospital and they do it for a nominal fee or gratis if the parents simply cannot afford to pay. The house needs donations in order to continue to operate and readily accepts products to assist them in delivery of services. We had Evan in full superhero costume when we made our delivery and the staff gave him a huge welcome to the house. He was given a full tour of the facilities and made to feel special for taking the time to help others. It was a very good time for all.
When Evan was in hospital for the first round of Mexotrexate we all had a small scare about his surgery site. Evan rarely complains about having pain or discomfort and when a nurse gave a gentle squeeze to the middle of his right upper arm, not only did he wince in pain but he actually gave out a good vocal disapproval of the squeeze. An immediate X-ray of the area was ordered and during the wait for the X-ray to be taken and read there was considerable concern. This is where several things could be going wrong including: fracture of the allograft; infection; dislocation of the plates and screws and finally a occurrence of the dreaded sarcoma. The news was good, the X-ray showed all items intact and right where they should be! The reason for the pain is still unknown but I think it is related to nerves still coming to life after the surgery. The X-ray did show that there is still no "boning over" of the allograft and this is expected due to the chemo which is keeping his marrow to a minimum.
The posts are becoming less frequent and that should be a comfort to you all in that there is little to report. Things are status quo and the chemo will go on until the Doctor determines he is comfortable with ceasing the drugs. We are not lulled into a sense of relaxation but will remain vigilant for signs of something going wrong. Please check back often and hope you see nothing and when you do see a new post wish that it is just an update on great progress. Evan will start the next full round of chemo on Thursday 05/15/2014 and should be done with that round by 06/16/2014 as long as his counts are good and he does not develop an infection.
There will be another 3 full rounds of Chemo at the very least before Evan can be determined NED and we are hoping that the holidays will be another milestone in Evan's journey that allows him to be free of the cancer. We are all aware that we must be vigilant afterwards and have frequent scans to make sure that the cancer stays away and be ready to fight aggressively should it return.
After I picked up Meghan, Evan and Matthew on Sunday we took a little detour to the Ronald McDonald house which in on the Health Park Campus. I have been donating food and other necessities to the house over the past few weeks as a way of paying it forward to others in similar situations that are not as fortunate as we are to be so close to the hospital. Ronald McDonald houses across the country make sure that parents of hospitalized children have a safe place to stay during their stay in the hospital and they do it for a nominal fee or gratis if the parents simply cannot afford to pay. The house needs donations in order to continue to operate and readily accepts products to assist them in delivery of services. We had Evan in full superhero costume when we made our delivery and the staff gave him a huge welcome to the house. He was given a full tour of the facilities and made to feel special for taking the time to help others. It was a very good time for all.
When Evan was in hospital for the first round of Mexotrexate we all had a small scare about his surgery site. Evan rarely complains about having pain or discomfort and when a nurse gave a gentle squeeze to the middle of his right upper arm, not only did he wince in pain but he actually gave out a good vocal disapproval of the squeeze. An immediate X-ray of the area was ordered and during the wait for the X-ray to be taken and read there was considerable concern. This is where several things could be going wrong including: fracture of the allograft; infection; dislocation of the plates and screws and finally a occurrence of the dreaded sarcoma. The news was good, the X-ray showed all items intact and right where they should be! The reason for the pain is still unknown but I think it is related to nerves still coming to life after the surgery. The X-ray did show that there is still no "boning over" of the allograft and this is expected due to the chemo which is keeping his marrow to a minimum.
The posts are becoming less frequent and that should be a comfort to you all in that there is little to report. Things are status quo and the chemo will go on until the Doctor determines he is comfortable with ceasing the drugs. We are not lulled into a sense of relaxation but will remain vigilant for signs of something going wrong. Please check back often and hope you see nothing and when you do see a new post wish that it is just an update on great progress. Evan will start the next full round of chemo on Thursday 05/15/2014 and should be done with that round by 06/16/2014 as long as his counts are good and he does not develop an infection.
Subscribe to:
Posts (Atom)