Tuesday, May 31, 2011
Treatment #2
Zoë had her second chemotherapy treatment on Friday, May 27th. While the appointment at the oncology clinic went great, this past weekend has been very hard on her. She has been nauseated and throwing up since Friday night. We have been trying to combat the nausea with Zofran but it has not been working. I called the oncology clinic yesterday to see if there was anything else I could do for her since she had not been able to keep anything down since Friday. I was instructed to alternate Benadryl and Zofran every 3 hours. I was really hoping this would help her but nearly every time she swallowed anything it would come right back up, including her medicine. Worried she may be getting dehydrated, I took her to the ER in Joplin (the one that wasn’t blown away by the tornado last Sunday). They admitted her very quickly since our doctor’s office had called ahead and told them we were on our way. I guess it’s kinda like call ahead seating at Texas Roadhouse. Anyway, it was comforting to know she would not have to be around anyone that was sick. Her blood counts are still good at this point but I didn’t want to take any chances. After we were admitted, we were placed in a room where we waited for the nurse to come in and access Zoë’s port. The ER did not have the right sized needle for the job. Lucky for us Children’s Mercy Hospital had given us a kit to take with us in case we had to go to the ER with all of the materials needed to access her port. Once they accessed her port they were able to take blood samples and start her on some fluids. The ER doctor said her throat was inflamed from her throwing up so much but other than that physically she looked well. All of her blood counts came back good and we were given a prescription for Phenergan and sent home. Once we got home she was feeling queasy again. While she was in the bathroom, I noticed a small lock of hair that had fallen out and was on lying on her shoulder. It is the time she has lost any of her hair. She has still been a little sick since we have been home but I am hoping for the best. She could use some peaceful rest.
Saturday, May 21, 2011
The First Treatment!
Zoë has made it through her first chemo treatment!
After searching seven different pharmacies for Lidocaine cream and none of them having it in stock, we decided to go to the appointment about an hour early (it takes that long to take full effect) to see if we could get some from the hospital. After we applied it to the area around her port, we decided to get some lunch from the hospital cafeteria. Zoë had never been to the 50’s themed diner and was excited to see it for the first time.
Once we finished lunch we headed back up to the Hemotology/Oncology office. Her vitals were taken and we were escorted to an exam room. Lidicaine is a WONDERFUL thing. Zoë has never liked being poked and is always anxious when she knows it’s coming. The nurse told her she was going to count to three and then give her a little poke. Zoë was a squirming a little when the nurse said “three” and Zoë didn’t realize that the needle was in and she was done being poked. The nurse drew blood for labs (which took about an hour to come back). All of her blood counts were very good. We expect her counts to rapidly decline in the first 7-14 days and will go up and down throughout her chemo.
After some anti-nausea medication and Benadryl, Zoë received her first chemo medicine (Vincristine). Next up was Carboplatin. This medication is given over a period of about an hour. All in all, we were at the doctor’s office for about four hours. Zoe seemed to have fun while she was getting her medication. We played CandyLand, played on the iPad and watched Lilo and Stitch 2. She drifted off to sleep while watching Lilo and Stitch 2 just after it started. She was still sleeping when it was time to take the iv out of her port and although she was irritated that we had to wake her up she did very well when the nurse took it out. Once we got to the car and started on the way home Zoë said she was hungry. We stopped at Taco Bueno and got her a chicken quesadilla. I think it may soon become something we do every “Doctor Day” on the way home. We don’t have one in Joplin and it’s one of my favorite fast food places.
Zoë has had extremely mild nausea. Her anti-nausea medication (Zofran) is working well for her. I hope her nausea continues to be kept at bay and she can enjoy the weekends. She is also taking an antibiotic during the weeks to prevent a certain type of pneumonia. Most of her medications are on an as needed basis so she won’t be taking them every day. Zoë has been looking forward to “Doctor Day” every week and I hope her excitement for Fridays to come will continue.
After searching seven different pharmacies for Lidocaine cream and none of them having it in stock, we decided to go to the appointment about an hour early (it takes that long to take full effect) to see if we could get some from the hospital. After we applied it to the area around her port, we decided to get some lunch from the hospital cafeteria. Zoë had never been to the 50’s themed diner and was excited to see it for the first time.
Once we finished lunch we headed back up to the Hemotology/Oncology office. Her vitals were taken and we were escorted to an exam room. Lidicaine is a WONDERFUL thing. Zoë has never liked being poked and is always anxious when she knows it’s coming. The nurse told her she was going to count to three and then give her a little poke. Zoë was a squirming a little when the nurse said “three” and Zoë didn’t realize that the needle was in and she was done being poked. The nurse drew blood for labs (which took about an hour to come back). All of her blood counts were very good. We expect her counts to rapidly decline in the first 7-14 days and will go up and down throughout her chemo.
After some anti-nausea medication and Benadryl, Zoë received her first chemo medicine (Vincristine). Next up was Carboplatin. This medication is given over a period of about an hour. All in all, we were at the doctor’s office for about four hours. Zoe seemed to have fun while she was getting her medication. We played CandyLand, played on the iPad and watched Lilo and Stitch 2. She drifted off to sleep while watching Lilo and Stitch 2 just after it started. She was still sleeping when it was time to take the iv out of her port and although she was irritated that we had to wake her up she did very well when the nurse took it out. Once we got to the car and started on the way home Zoë said she was hungry. We stopped at Taco Bueno and got her a chicken quesadilla. I think it may soon become something we do every “Doctor Day” on the way home. We don’t have one in Joplin and it’s one of my favorite fast food places.
Zoë has had extremely mild nausea. Her anti-nausea medication (Zofran) is working well for her. I hope her nausea continues to be kept at bay and she can enjoy the weekends. She is also taking an antibiotic during the weeks to prevent a certain type of pneumonia. Most of her medications are on an as needed basis so she won’t be taking them every day. Zoë has been looking forward to “Doctor Day” every week and I hope her excitement for Fridays to come will continue.
Monday, May 16, 2011
Bandage off
Well, Kasi just took the bandage off of Zoë and gave her, her first bath in three days. I walked in and asked Zoë if taking the bandage off hurt. She said, with a smile, that it did not. Kasi thinks that she may have scars, but right now I don’t think Zoë knows or cares. Zoës strength, up to now, is the one thing has kept me from completely freaking out. Every time she goes to the hospital or has tests done; she only seems to care about the “fun” part or “friends” she met. Even after dealing with “pokes” and medicine, she will just smile and tell you how much she loves you or missed you. With the hard part coming up, I can only hope she continues to be strong.
Friday, May 13, 2011
Port Placement
Zoë is at home and doing well after her port placement today. Her port will greatly reduce the amount of “pokies” she has to endure. She will still have to be “poked” when accessing her port but the nurses will not have to worry about finding a good vein to draw blood or insert an IV. We will also be given a numbing cream to apply to the area around her port so that the “pokie” will not hurt her as bad.
Zoë has two small incisions where they have placed her port. One is about an inch long and the other is very small. Both have dissolvable sutures and medical glue to help the wounds heal with the least amount of scarring. She has a dressing covering both that will be left on for three days. She may be sore at the point of the port insertion but that discomfort should only last for a maximum of two to three weeks. She has not complained of anything hurting as of yet.
Zoë was very apprehensive about her procedure today but we were able to make it through. She was given Versed to calm her before they even attempted the IV (thank you Memaw for the suggestion). Although it only seemed to help calm her fears slightly, I was relieved when she told me later that she did not even remember getting that “pokie” from the nurse with the blue hair. Everything with the surgery went splendid. The port was tested while she was asleep and worked as it should. As soon as they were finished, we were called back to be with her in the recovery room when she woke up from the anesthesia. Her throat was a little sore after having the breathing tube during surgery but she was able to take a few small sips of apple juice. Once the nurse made sure she was able to keep the juice down we were allowed to be discharged and head home. She slept most of the way home but as soon as she woke up she was hungry. She, of course, was asking if we could go to McDonalds.
Zoë has two small incisions where they have placed her port. One is about an inch long and the other is very small. Both have dissolvable sutures and medical glue to help the wounds heal with the least amount of scarring. She has a dressing covering both that will be left on for three days. She may be sore at the point of the port insertion but that discomfort should only last for a maximum of two to three weeks. She has not complained of anything hurting as of yet.
Zoë was very apprehensive about her procedure today but we were able to make it through. She was given Versed to calm her before they even attempted the IV (thank you Memaw for the suggestion). Although it only seemed to help calm her fears slightly, I was relieved when she told me later that she did not even remember getting that “pokie” from the nurse with the blue hair. Everything with the surgery went splendid. The port was tested while she was asleep and worked as it should. As soon as they were finished, we were called back to be with her in the recovery room when she woke up from the anesthesia. Her throat was a little sore after having the breathing tube during surgery but she was able to take a few small sips of apple juice. Once the nurse made sure she was able to keep the juice down we were allowed to be discharged and head home. She slept most of the way home but as soon as she woke up she was hungry. She, of course, was asking if we could go to McDonalds.
Saturday, May 7, 2011
The Plan
Zoë had three appointments on Thursday. The first appointment was for a second, more in depth, occupational therapy evaluation. We were given several exercises we can do at home so we will not have to drive to Kansas City as much. She likes these appointments and has fun going to them, so we are going to try to work a few of them in when she goes for treatment. The second appointment was for a physical therapy evaluation. She has a few issues with the strength in her right ankle but nothing to be overly concerned about. We were given a band we can use to help strengthen her ankle at home. Physical therapy is not really needed at this time. She would get a small benefit from it, but with everything else going on we have decided to concentrate on her treatment for her tumor and occupational therapy.
Zoë’s third appointment was with her oncologist, Dr. August. I did not realize she had never met him until we were on the way to his office. She was hoping for a girl doctor and was slightly disappointed that her doctor was a boy. She had a great time at her appointment and even got to pick a prize from the prize closet (she picked suncatchers).
Dr. August has obtained several second opinions on Zoë’s diagnosis. He sent her scans to other pediatric oncologists and to a team at St. Judes Childrens Hospital. They have all agreed with his preliminary diagnosis of a low grade optic pathway glioma. Because everyone agrees on the diagnosis, we are not going to do a biopsy. It is too risky and will probably only tell the doctors what they already know. She will also not be having surgery to remove her tumor. We feel the risks are too great at her age for surgery. She will also not be doing radiation. Again we feel that the risks are just too great at her age. We have decided on chemotherapy as the treatment option we are going with for Zoë. She will be going through chemotherapy for approximately one year. This coming Friday she will have a semi-permanent IV, called a port, placed in her chest. Each time she has chemotherapy or needs blood drawn it will be done by accessing her port. This will greatly reduce the number of times she will have to be “poked”. She will begin weekly treatments the following Friday (May 20th). Her chemotherapy will consist of mainly two medications, Vincristine and Carboplatin, given through an IV. Vincristin works by interrupting cell division. Carboplatin works by attacking rapidly dividing cells. She will begin weekly treatments until the end of July. She will continue to have treatment after the end of July but will have a few weeks off here and there. When she does not go to the clinic, she will have a home health nurse come and draw labs for Dr. August. It will be crucial to know her blood counts every week even though she may not be going to the clinic.
Zoë will still be able to begin Kindergarten in the fall. She is excited about going to the “bulldog school” (as she calls it). She is such a charismatic little girl we know she will have no problem making new friends.
For those of you that would like more information, please go to www.curesearch.org
Zoë’s third appointment was with her oncologist, Dr. August. I did not realize she had never met him until we were on the way to his office. She was hoping for a girl doctor and was slightly disappointed that her doctor was a boy. She had a great time at her appointment and even got to pick a prize from the prize closet (she picked suncatchers).
Dr. August has obtained several second opinions on Zoë’s diagnosis. He sent her scans to other pediatric oncologists and to a team at St. Judes Childrens Hospital. They have all agreed with his preliminary diagnosis of a low grade optic pathway glioma. Because everyone agrees on the diagnosis, we are not going to do a biopsy. It is too risky and will probably only tell the doctors what they already know. She will also not be having surgery to remove her tumor. We feel the risks are too great at her age for surgery. She will also not be doing radiation. Again we feel that the risks are just too great at her age. We have decided on chemotherapy as the treatment option we are going with for Zoë. She will be going through chemotherapy for approximately one year. This coming Friday she will have a semi-permanent IV, called a port, placed in her chest. Each time she has chemotherapy or needs blood drawn it will be done by accessing her port. This will greatly reduce the number of times she will have to be “poked”. She will begin weekly treatments the following Friday (May 20th). Her chemotherapy will consist of mainly two medications, Vincristine and Carboplatin, given through an IV. Vincristin works by interrupting cell division. Carboplatin works by attacking rapidly dividing cells. She will begin weekly treatments until the end of July. She will continue to have treatment after the end of July but will have a few weeks off here and there. When she does not go to the clinic, she will have a home health nurse come and draw labs for Dr. August. It will be crucial to know her blood counts every week even though she may not be going to the clinic.
Zoë will still be able to begin Kindergarten in the fall. She is excited about going to the “bulldog school” (as she calls it). She is such a charismatic little girl we know she will have no problem making new friends.
For those of you that would like more information, please go to www.curesearch.org
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