Evan began his Leucovorin treatment last nite at about 5:30 PM. I had reported yesterday that he should begin the treatment 12 hours after the last Methotrexate went in but I was wrong on that. Please forgive me but there is a ton of information swirling around and I am bound to make an occasional error.
His blood was taken and analyzed for levels of Methotrexate after the Leucovorin treatment and it was 4.5 (not sure the unit of measurement) and for him to leave the hospital the level must be at .01 or less so he has a way to go. The nursing staff will check the levels again after 5:30 PM today. He is receiving Leucovorin at regular intervals along with fluids. I was at the hospital this morning to deliver some pasta that he requested last night and he ate it as soon as I got there. We made quite a bit so there is some for later if he would like some more.
I really appreciate people close by respecting Evan and Meghan's privacy and we appreciate all the gifts left for him. It will take a village to beat this and it is humbling to see just how many people want to belong to the village.
I will update later on how much his Methotrexate levels have dropped an possibly when he might be released.
It is 8:10 PM and the new numbers for Methotrexate levels are in; they are 0.27 down from 4.5 so hopefully in the next 12 hours or so the levels will be below the .01 needed to get him out for a few days until Thursday. Meghan just reported that they will check blood every 12 hours now and that his creatin (kidney) levels are doing just fine. I will report in the morning as I get new information.
Just good news. Please keep sending prayers and positive thoughts! He is truly our Superman!!
Sunday January 19, 2014, 10:00 AM : Evan's Methotrexate level is at .17; still too high to bring him home yet. He will have another blood draw at 5:00 PM and hopefully he can come home tonight.
Saturday, January 18, 2014
Thursday, January 16, 2014
January 16, 2014
I picked up Evan at home today with his Mom and dropped them off at Health Park so Evan could begin his next round of Chemo. The Doctors and staff all say that this round of Chemo will be less nauseating than the first. I really hope this is the case! He will have his port accessed and blood drawn to assess his ANC values and if they are at or above thresholds, he will then have a 6 hour or so infusion of saline and dextrose to pump him up so he can accept the Chemo. This is a 4 hour drip and the chemical will affect his liver and kidneys. After the 4 hour drip, there is a window of a few hours and then they must begin an infusion of Folate (folic acid) in order to jump start the liver and kidneys and flush out the chemical. Evan will be hospitalized for at least 72 hours so tests can be run to make sure that his organs are responding to the Folate. He will then be able to go home only to return to the hospital next Thursday January 23 to repeat the process I just described. Then the following Thursday he will return again to begin a repeat of the DOX and Cisplatain.
Last night Justin, Kristin and family visited with the Hampel herd as their flight back to the frigid North is today. Evan was convinced that cutting his hair really close would be a benefit and be much better than having his hair fall out in clumps. When the hair falls out in clumps it just an irritant as it goes down his back and makes him itch. I think he looks GREAT!
I will be writing to this post throughout the day so please check back to see updates. The next post should be shortly with his ANC values. Enjoy the pictures.
It is 10:30 AM and Evan is currently having IV fluids and waiting for a room on the 4th floor. The floor is currently full but it is expected that a discharge will happen shortly. His ANC levels have just come in and they are 2,880 well above the threshold for having Chemo today. His spirits are good! I will post as I know more as the day continues.
Last night Justin, Kristin and family visited with the Hampel herd as their flight back to the frigid North is today. Evan was convinced that cutting his hair really close would be a benefit and be much better than having his hair fall out in clumps. When the hair falls out in clumps it just an irritant as it goes down his back and makes him itch. I think he looks GREAT!
I will be writing to this post throughout the day so please check back to see updates. The next post should be shortly with his ANC values. Enjoy the pictures.
It is 10:30 AM and Evan is currently having IV fluids and waiting for a room on the 4th floor. The floor is currently full but it is expected that a discharge will happen shortly. His ANC levels have just come in and they are 2,880 well above the threshold for having Chemo today. His spirits are good! I will post as I know more as the day continues.
It is 4:20 PM and I have stopped by the hospital. Evan is ready for the Chemo and should be done by 7:30 tonight. The Folate should happen before midnight. I will let all know later how he is reacting to the Chemo.
Just got home from the hospital. Evan's Chemo started a little later than planned and should be done by 9:30 tonight. His spirits are good and so far no real nausea from the Methotrexate. He did have a puking session from the Decadron that was given prior to the Methotrexate. Decadron is given to help kill cancer cells and enhance the Chemo given. The nurses gave it at a rate of one dose IV over 20 minutes and they felt it was too fast for him so next time they will up the time to 30 minutes and that should keep him from tossing the old cookies. I plan on visiting Evan tomorrow at lunch time and Sherie is going to be there after her work session on Friday; sometime after 2. More updates to follow as I get them.
It is 9:40 PM and Evan is done with the Methotrexate drip! He has had no nausea or vomiting from this round of Chemo; what a relief! He is sleeping right now and is tolerating the treatment better than expected. It is so hard to watch a little tyke heaving for no reason in his mind. They will leave the Methotrexate flowing in his body for 12 hours and then start the Folate rescue. Everyone have a good night and I will report tomorrow on how well he is doing with the treatment and the Folate.
Just got home from the hospital. Evan's Chemo started a little later than planned and should be done by 9:30 tonight. His spirits are good and so far no real nausea from the Methotrexate. He did have a puking session from the Decadron that was given prior to the Methotrexate. Decadron is given to help kill cancer cells and enhance the Chemo given. The nurses gave it at a rate of one dose IV over 20 minutes and they felt it was too fast for him so next time they will up the time to 30 minutes and that should keep him from tossing the old cookies. I plan on visiting Evan tomorrow at lunch time and Sherie is going to be there after her work session on Friday; sometime after 2. More updates to follow as I get them.
It is 9:40 PM and Evan is done with the Methotrexate drip! He has had no nausea or vomiting from this round of Chemo; what a relief! He is sleeping right now and is tolerating the treatment better than expected. It is so hard to watch a little tyke heaving for no reason in his mind. They will leave the Methotrexate flowing in his body for 12 hours and then start the Folate rescue. Everyone have a good night and I will report tomorrow on how well he is doing with the treatment and the Folate.
Wednesday, January 15, 2014
1/15/2014
Evan has had a good week so far, his uncle and aunt from New York are here to visit with their two children and it has been a nice diversion. The noise level in the house with 6 children under the age of 9 is akin to two jet airplanes taking off at once but I have no complaints, just happy to see them all playing.
Evan went to school the past two days lasting longer on Monday than Tuesday as it is tiring for him to engage in school. It is very nice to see that the school and the teacher are all accommodating to him and his needs. The Oncology group has stressed to make his life as normal as possible and it is so encouraging to see everyone pitching in to make that happen.
Evan begins the next round of Chemo Thursday so expect posts starting tomorrow on events surrounding his hospital stay. I did notice last night when Evan was watching TV that his hair is beginning to really come out in clumps so I don't expect him to have much left after this round.
Evan went to school the past two days lasting longer on Monday than Tuesday as it is tiring for him to engage in school. It is very nice to see that the school and the teacher are all accommodating to him and his needs. The Oncology group has stressed to make his life as normal as possible and it is so encouraging to see everyone pitching in to make that happen.
Evan begins the next round of Chemo Thursday so expect posts starting tomorrow on events surrounding his hospital stay. I did notice last night when Evan was watching TV that his hair is beginning to really come out in clumps so I don't expect him to have much left after this round.
Saturday, January 11, 2014
January 10, 2014
We went to Tampa toady to the All Children's Clinic near Moffit research center which is within the University of Florida Tampa campus. We met the surgical team there and had an open discussion on Evan's options for limb salvage surgery.
While we came home with no definitive path to take we did come home with a real comfortable sense that the team of Doctors and Nurses were not only up for the challenge that Evan is presenting but were eager to assist and had every intention of treating Evan as if he were their own son. Each team member showed compassion, concern and dedication to us at all times. One of the Doctors actually sat on the floor and discussed mind craft with Evan as it is one of his favorite games. This same Doctor offered his phone to Evan so he could play a similar game with him all while sitting on the floor.
The team reviewed the disc of radiology and CT scans that were done in Fort Myers; showing us where the cancer was, where the fracture was and that there was very little muscle involvement. They then discussed the two options that are currently available to us and told us they could not recommend anything yet as there needed to be further discussions with other Doctors and members of Children's hospital before they could recommend. They stated that this center has done many limb salvage surgeries (enough to be the leader) that included both leg and arm. They clearly stated that they had never had a case as young a Evan so that is why they are moving carefully. It was very clear to they had only Evans' interest in mind.
They also were not sure if they needed to remove the growth plate at the top of the bone which would be very good for him. They may have to in order to obtain clear margins but they need to research that further.
Option 1 is to have an expandable bone placed in his upper arm. This will require multiple surgeries in the future in order to lengthen the bone as he grows. The team has implanted this type of device in mostly lower legs and the lengthening process is usually on a monthly basis due to the fact that you want the leg to grow at the same rate as the healthy one. In Evan's case since it is the arm and it doesn't have to be exact just symmetrical the surgeries can happen at larger intervals. This prosthetic device in made in the UK and takes a few months to manufacture for Evan. The big question is: can the device be made for such a small person? They didn't know and were going to find out so Option 1 may not be available.
Option 2 involves harvesting a piece of the smaller lower leg bone along with the blood supply and implanting it in the space that the cancerous bone was taken. This implantation preserves the growth area of the implant and his arm should grow normally. It takes a second team of plastic surgeons to take the bone from the leg so the time in surgery and complexity increases. The lower portion of the implant will be attached with plates and screws. His leg will grow normally as they are taking only a portion of the bone and it is the smaller of the bones.
One of the Doctors removed the plastic protective shield that was protecting Evan's fracture in the upper right arm. His arm looked great! They removed the stitch that was there from the biopsy and ordered an X-ray to compare the new one to the first set. There was nothing but good news upon the review of that X-ray! First the fracture was healing over very nicely with new bone being laid over the fracture site. The Doctor explained that the fracture had offset the bone somewhat and it was clear on the X-ray that in order for the body to try and straighten the bone, more new bone was being laid on one side as opposed to the other. The other and most important bit of information was the difference in the tumor site. The first X-ray showed a dark and well formed mass; the new one showed what looked like whitish cotton ball like structures in the same area. The Doctor explained that the tumor was being worked on nicely by the first round of Chemo and that the Chemo was working! We were simply amazed!
So I know that is a ton of information and we are still rolling all this around in our heads. The team of Doctors will be back to us in a few weeks, probably by conference call or face time to give us more information on what they would like to see us do. They welcome us going for second opinions but I am not sure that is going to be necessary. One of the sites we considered to go to was CHOP in Philadelphia but one of the Doctors revealed that he did his fellowship at CHOP under the lead Orthopedic surgeon. It is apparent that this team will be consulting with the top surgeons in the Country on how to proceed. We are reserving the right to seek second opinion as we go down the road to surgery. It was also made clear to us that the Chemo treatments are the most important to Evan now and if surgery is delayed a bit it will have no bearing on the outcome.
Evan is due for next round of Chemo on January 16th so there may be a brief lull in posts until then. his Uncle and family are due to arrive in Fort Myers on January 11 for a visit and mini vacation. If anything of interest happens before the 16th i will post for all to see!
Thank you to everyone who is reading this blog and know I read every comment and appreciate any comments left.
While we came home with no definitive path to take we did come home with a real comfortable sense that the team of Doctors and Nurses were not only up for the challenge that Evan is presenting but were eager to assist and had every intention of treating Evan as if he were their own son. Each team member showed compassion, concern and dedication to us at all times. One of the Doctors actually sat on the floor and discussed mind craft with Evan as it is one of his favorite games. This same Doctor offered his phone to Evan so he could play a similar game with him all while sitting on the floor.
The team reviewed the disc of radiology and CT scans that were done in Fort Myers; showing us where the cancer was, where the fracture was and that there was very little muscle involvement. They then discussed the two options that are currently available to us and told us they could not recommend anything yet as there needed to be further discussions with other Doctors and members of Children's hospital before they could recommend. They stated that this center has done many limb salvage surgeries (enough to be the leader) that included both leg and arm. They clearly stated that they had never had a case as young a Evan so that is why they are moving carefully. It was very clear to they had only Evans' interest in mind.
They also were not sure if they needed to remove the growth plate at the top of the bone which would be very good for him. They may have to in order to obtain clear margins but they need to research that further.
Option 1 is to have an expandable bone placed in his upper arm. This will require multiple surgeries in the future in order to lengthen the bone as he grows. The team has implanted this type of device in mostly lower legs and the lengthening process is usually on a monthly basis due to the fact that you want the leg to grow at the same rate as the healthy one. In Evan's case since it is the arm and it doesn't have to be exact just symmetrical the surgeries can happen at larger intervals. This prosthetic device in made in the UK and takes a few months to manufacture for Evan. The big question is: can the device be made for such a small person? They didn't know and were going to find out so Option 1 may not be available.
Option 2 involves harvesting a piece of the smaller lower leg bone along with the blood supply and implanting it in the space that the cancerous bone was taken. This implantation preserves the growth area of the implant and his arm should grow normally. It takes a second team of plastic surgeons to take the bone from the leg so the time in surgery and complexity increases. The lower portion of the implant will be attached with plates and screws. His leg will grow normally as they are taking only a portion of the bone and it is the smaller of the bones.
One of the Doctors removed the plastic protective shield that was protecting Evan's fracture in the upper right arm. His arm looked great! They removed the stitch that was there from the biopsy and ordered an X-ray to compare the new one to the first set. There was nothing but good news upon the review of that X-ray! First the fracture was healing over very nicely with new bone being laid over the fracture site. The Doctor explained that the fracture had offset the bone somewhat and it was clear on the X-ray that in order for the body to try and straighten the bone, more new bone was being laid on one side as opposed to the other. The other and most important bit of information was the difference in the tumor site. The first X-ray showed a dark and well formed mass; the new one showed what looked like whitish cotton ball like structures in the same area. The Doctor explained that the tumor was being worked on nicely by the first round of Chemo and that the Chemo was working! We were simply amazed!
So I know that is a ton of information and we are still rolling all this around in our heads. The team of Doctors will be back to us in a few weeks, probably by conference call or face time to give us more information on what they would like to see us do. They welcome us going for second opinions but I am not sure that is going to be necessary. One of the sites we considered to go to was CHOP in Philadelphia but one of the Doctors revealed that he did his fellowship at CHOP under the lead Orthopedic surgeon. It is apparent that this team will be consulting with the top surgeons in the Country on how to proceed. We are reserving the right to seek second opinion as we go down the road to surgery. It was also made clear to us that the Chemo treatments are the most important to Evan now and if surgery is delayed a bit it will have no bearing on the outcome.
Evan is due for next round of Chemo on January 16th so there may be a brief lull in posts until then. his Uncle and family are due to arrive in Fort Myers on January 11 for a visit and mini vacation. If anything of interest happens before the 16th i will post for all to see!
Thank you to everyone who is reading this blog and know I read every comment and appreciate any comments left.
Thursday, January 9, 2014
January 09, 2014
Evan had another clinic appointment today to check blood counts and ANC levels. Today his sister was along for the visit. On January 06 his levels had plummeted with very small white counts. He has been receiving intramuscular Neupogen for stimulation of his marrow to produce more white cells faster since the ending of the first round of Chemo. Today after only 3 days his counts have rebounded very nicely. Today the counts are as follows: White cells 32.9; Neutrophils 41.0; Band Neutrophils 31.0 and ANC 23688! Thank you Neupogen!
Since the levels are so good at this time Evan does not have to return to clinic until January 16, 2014 when his next round of Chemo is scheduled. He is going to attend his VPK classes on Monday unless he shows signs of infection. I know this is early on in the treatment process and there will be bad times ahead but it is nice to have some positive news early on. Evan is beginning to lose hair so over the next week or so pictures will show his new and beautiful image!
Tomorrow is another big day for Evan. We are traveling to the Moffitt Center in Tampa to have our first appointment with the specialist that will remove the cancerous bone and implant a prosthetic device for him. I will be posting either Friday or Saturday on how that visit was and what the plan of attack is as well as the projected date of surgery.
Since the levels are so good at this time Evan does not have to return to clinic until January 16, 2014 when his next round of Chemo is scheduled. He is going to attend his VPK classes on Monday unless he shows signs of infection. I know this is early on in the treatment process and there will be bad times ahead but it is nice to have some positive news early on. Evan is beginning to lose hair so over the next week or so pictures will show his new and beautiful image!
Tomorrow is another big day for Evan. We are traveling to the Moffitt Center in Tampa to have our first appointment with the specialist that will remove the cancerous bone and implant a prosthetic device for him. I will be posting either Friday or Saturday on how that visit was and what the plan of attack is as well as the projected date of surgery.
Monday, January 6, 2014
January 06, 2014 Clinic Visit
Evan visited the clinic today to draw blood from his port for evaluation. His color and spirits are good and he was playful. His big brother Ethan came along for moral support. Accessing Evan's port has become much easier and his anxiety over the process has diminished substantially. The doctor felt prior to the blood work analysis that he would probably discontinue the nupagen (sp).
Unfortunately his blood work came back disappointing. His white count is now 2.0 and was 11.5 a few days ago along with the neutrophils that are now 8.0 and were 77.0 a few days ago. His ANC has also plummeted from 9200 to 160; so there is no discontinuation of the nupagen. He has another appointment on Thursday the 9th to see if levels have increased. Evan also is scheduled to see the Orthopedist in Tampa Florida at the Moffitt center on Friday the 10th.
Unfortunately his blood work came back disappointing. His white count is now 2.0 and was 11.5 a few days ago along with the neutrophils that are now 8.0 and were 77.0 a few days ago. His ANC has also plummeted from 9200 to 160; so there is no discontinuation of the nupagen. He has another appointment on Thursday the 9th to see if levels have increased. Evan also is scheduled to see the Orthopedist in Tampa Florida at the Moffitt center on Friday the 10th.
Thursday, January 2, 2014
1/2/2014
Evan had his first visit back to the clinic today after his Chemo treatment. He had a mini physical and blood drawn from his port to see how his white cell, hemoglobin, platelets and ANC were doing. The Doctor was impressed with his color and mood and decided that after the blood draw the port could be flushed with Heparin and the port could be closed and he could go home as he was confident his counts would be fine. A few hours later the results were phoned into mom and they are: White cells 11.5; Hemoglobin 10.2; Platelets 243 and ANC 9000. His next appointment is on Monday.
Evan has been resting well since his breakout from the hospital and had an enjoyable New Years Eve. He was able to watch a home grown fireworks display put on by his Dad.
Evan has been resting well since his breakout from the hospital and had an enjoyable New Years Eve. He was able to watch a home grown fireworks display put on by his Dad.
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