Chemo
Monday, March 4, 2013 Cycle 1 Day 1
We are wide-awake even before the alarm goes off this morning. We have been up most of the night. I wondering how London is going to handle the chemo. Also trying to remember all the things I'm suppossed to remember. Put cotton into the diaper(so they can get a urine sample prior to the chemo), put the lidocaine (numbing ointment) over her port site so she won't feel the needle. Get the kids up, get them so they are ready for school before my mother gets here at 6am, when we have to leave to go to the clinic. Finish packing her bag. Get her to eat some breakfast ( later I will regret this part). We arrive a few minutes eary, which is good because we have a chance to walk thru the bridges over to Children's Hospital to the Lobby so London can visit "her" Nemo. Boston Children's Hospital has Clown fish(Nemo) and a fish that looks like Gil(another character in the Finding Nemo movie). London looks foward to this. Sometimes in the car, she'll call out"where are we going?" and I say," we're going to see Nemo" She gets very excitied. Also at the Jimmy Fund, in the Dana Farber building there is a large fish tank with "Dori"(another main character from Finding Nemo". The atmosphere is very calming and friendly. Many volunteers are always there soing crafts and playing games with the kids. It is not a scary place. I actually feel relaxed there. Up in the waiting room, London's name is called for her vital signs, weight, etc. She then sees the nurse who will draw off her port for labs prior to the start of chemo. London, seeing the set up for what she calls a "pinch", starts to cry. She gets herself so worked up, that just as the nurse is drawing the blood, I see London starting to gag from crying, and I know what is about to happen. I quickly pull her into me , and she vomits all over me, down my neck, my shirt, and a part of my pants. (I will not push yogurt again on London for a while). I have to change into scrubs. I have packed so good for London, but did not think to pack for myself. After this, we are set up into a room where London will then receive IV fluids, and then 2 Chemos: Carbolplatin and Etoposide. We meet many people, who are available to help. We are taught about the chemo, a "fish" book-which is a wonderful resource. We meet the social worker, casemanger, resource worker, we see the RNP and the oncologist. Time goes by very quickly. London is very calm today. She has made a liar out of me. I often will tell my husband when he is not available to come with us, that London is so busy, she jumps off stools, runs around, is absolutely a wild child. Today she is not. She does start to become restless towards the end and we are very thankful for my mother and her wonderful idea. She has wrapped individual little thoughtful gifts for London to open 1 at a time, play with until it looses her interest, then open another one. ( Thanks again mom!) It is around 5pm now. She is done for today. She did great! We will now go downstairs and pick up her prescriptions for anti-nausea, and more numbing cream. Due to traffic going home, we get home late. My mom has come back to get the kids off the bus, pick up from school and take care of them. We are all exhausted. We eat a quick dinner and get ready for bed to do it all again tommorrow.
March 5,2013 Tuesday
Day 2 of Cycle 1
Today is a quick day. London is only getting 1 chemo today, Etoposide. I have given her her zofran(early this morning), they give her lorazapam as well(this is not used for anxiety, it is used to prevent nausea). I am told it is easier to prevent it, than stop it if she develops it. So even after her final chemo dose for cycle 1 tommorrow, I will continue giving the anti-nausea meds until Saturday am. She also takes bactrim(liquid) Mondays, Wednesdays, and Fridays to prevent a lung infection which kids can develop while on chemo. I bring my other daughter, Madison with us today. She has come a couple times up to the clinc with me. This morning I found her crying before I was leaving. When I asked her what was wrong, she told me she was sad that this was the last time she would be doing London's hair. I held her and explained to her it doesn't work that way. You don't have chemo and it immediately all falls out. We will notice it of a course of time. (I am not 100% sure of this as I say this at this time, I know it won't just all come out, but I don't know the time frame)-later I ask our nurse who explains it might not even start to fall out until her next cycle. She explains we would see hair strands on her pillow, or when we wash or brush her hair. It may come out more noticable where her head rests up against something. She said some people then do like a bob cut, or cut their childs hair really short. This is a big issue in our house, her hair. London has beautiful long curly hair.(She is actually my first child with my curls). Madison loves to do her hair up, and paint London's nails. One of the social workers had given us some books for the kids to understand cancer and being a sibling of one with cancer. My youngest son, pipes in," we will know the chemo is working when London does loose her hair, it says it in my book". This seems to help. I take her with us to see that it's not really that bad. London plays, watches movies, reads books, colors, has snacks/lunch. Then we go home. We are back in time before the other kids are home from school.
March 6, 2013 Wednesday
Day 3 of Cycle 1
Again today will be a quick day. London is only getting 1 chemo, Etoposide. She has had no nausea or vomiting. Her appetite is good(normal). She is definitely herself today. It is just London and myself. She is highly active. Singing "no more monkeys jumping in the bed". I am trying to make sure she does not jump out of the bed, or pull on her IV line which is hooked up to the port in her chest. She is wearing her angel wings bracelet my sister,(London's aunt), has gotten for her. She brought it over the night before London started on the chemo. It looks like an alex and ani bracelet. I have my alex and ani on from my mother which says HOPE. It reminds me that there is nothing without hope. Hope and faith mean everything. It is a reminder to me that with Christ, all things are possible. We have had excellent care, excellent nurses. I am very grateful. Today we are suppossed to be getting some heavy rain. I realize I may not have enough gas to get home while I am on the highway, so I see an exit sign for gas. I try to get back onto the highway, it is a oneway road. I get on, and end up getting lost for nearly an hour. This is the 1 time, I wish I had the GPS which I returned after getting it from my husband as a gift. I am a half hour late in time to get kids from school and the bus. I have my older kids now helping me. I feel bad. Today was the last dose of the 1st cycle. We take a deep breath. 1 down. London will start with homecare. A nurse will come to draw labs off her port Mondays, and Thursdays starting next week. We are happy to have finished cycle 1. She has handled this well. We really are very lucky. Thankyou GOD for keeping her healthy through all of this. Sometimes people will ask me, " how is London doing?" and I reply," she's healthy, except for the cancer-(which you would never know she has looking at her).
We are wide-awake even before the alarm goes off this morning. We have been up most of the night. I wondering how London is going to handle the chemo. Also trying to remember all the things I'm suppossed to remember. Put cotton into the diaper(so they can get a urine sample prior to the chemo), put the lidocaine (numbing ointment) over her port site so she won't feel the needle. Get the kids up, get them so they are ready for school before my mother gets here at 6am, when we have to leave to go to the clinic. Finish packing her bag. Get her to eat some breakfast ( later I will regret this part). We arrive a few minutes eary, which is good because we have a chance to walk thru the bridges over to Children's Hospital to the Lobby so London can visit "her" Nemo. Boston Children's Hospital has Clown fish(Nemo) and a fish that looks like Gil(another character in the Finding Nemo movie). London looks foward to this. Sometimes in the car, she'll call out"where are we going?" and I say," we're going to see Nemo" She gets very excitied. Also at the Jimmy Fund, in the Dana Farber building there is a large fish tank with "Dori"(another main character from Finding Nemo". The atmosphere is very calming and friendly. Many volunteers are always there soing crafts and playing games with the kids. It is not a scary place. I actually feel relaxed there. Up in the waiting room, London's name is called for her vital signs, weight, etc. She then sees the nurse who will draw off her port for labs prior to the start of chemo. London, seeing the set up for what she calls a "pinch", starts to cry. She gets herself so worked up, that just as the nurse is drawing the blood, I see London starting to gag from crying, and I know what is about to happen. I quickly pull her into me , and she vomits all over me, down my neck, my shirt, and a part of my pants. (I will not push yogurt again on London for a while). I have to change into scrubs. I have packed so good for London, but did not think to pack for myself. After this, we are set up into a room where London will then receive IV fluids, and then 2 Chemos: Carbolplatin and Etoposide. We meet many people, who are available to help. We are taught about the chemo, a "fish" book-which is a wonderful resource. We meet the social worker, casemanger, resource worker, we see the RNP and the oncologist. Time goes by very quickly. London is very calm today. She has made a liar out of me. I often will tell my husband when he is not available to come with us, that London is so busy, she jumps off stools, runs around, is absolutely a wild child. Today she is not. She does start to become restless towards the end and we are very thankful for my mother and her wonderful idea. She has wrapped individual little thoughtful gifts for London to open 1 at a time, play with until it looses her interest, then open another one. ( Thanks again mom!) It is around 5pm now. She is done for today. She did great! We will now go downstairs and pick up her prescriptions for anti-nausea, and more numbing cream. Due to traffic going home, we get home late. My mom has come back to get the kids off the bus, pick up from school and take care of them. We are all exhausted. We eat a quick dinner and get ready for bed to do it all again tommorrow.
March 5,2013 Tuesday
Day 2 of Cycle 1
Today is a quick day. London is only getting 1 chemo today, Etoposide. I have given her her zofran(early this morning), they give her lorazapam as well(this is not used for anxiety, it is used to prevent nausea). I am told it is easier to prevent it, than stop it if she develops it. So even after her final chemo dose for cycle 1 tommorrow, I will continue giving the anti-nausea meds until Saturday am. She also takes bactrim(liquid) Mondays, Wednesdays, and Fridays to prevent a lung infection which kids can develop while on chemo. I bring my other daughter, Madison with us today. She has come a couple times up to the clinc with me. This morning I found her crying before I was leaving. When I asked her what was wrong, she told me she was sad that this was the last time she would be doing London's hair. I held her and explained to her it doesn't work that way. You don't have chemo and it immediately all falls out. We will notice it of a course of time. (I am not 100% sure of this as I say this at this time, I know it won't just all come out, but I don't know the time frame)-later I ask our nurse who explains it might not even start to fall out until her next cycle. She explains we would see hair strands on her pillow, or when we wash or brush her hair. It may come out more noticable where her head rests up against something. She said some people then do like a bob cut, or cut their childs hair really short. This is a big issue in our house, her hair. London has beautiful long curly hair.(She is actually my first child with my curls). Madison loves to do her hair up, and paint London's nails. One of the social workers had given us some books for the kids to understand cancer and being a sibling of one with cancer. My youngest son, pipes in," we will know the chemo is working when London does loose her hair, it says it in my book". This seems to help. I take her with us to see that it's not really that bad. London plays, watches movies, reads books, colors, has snacks/lunch. Then we go home. We are back in time before the other kids are home from school.
March 6, 2013 Wednesday
Day 3 of Cycle 1
Again today will be a quick day. London is only getting 1 chemo, Etoposide. She has had no nausea or vomiting. Her appetite is good(normal). She is definitely herself today. It is just London and myself. She is highly active. Singing "no more monkeys jumping in the bed". I am trying to make sure she does not jump out of the bed, or pull on her IV line which is hooked up to the port in her chest. She is wearing her angel wings bracelet my sister,(London's aunt), has gotten for her. She brought it over the night before London started on the chemo. It looks like an alex and ani bracelet. I have my alex and ani on from my mother which says HOPE. It reminds me that there is nothing without hope. Hope and faith mean everything. It is a reminder to me that with Christ, all things are possible. We have had excellent care, excellent nurses. I am very grateful. Today we are suppossed to be getting some heavy rain. I realize I may not have enough gas to get home while I am on the highway, so I see an exit sign for gas. I try to get back onto the highway, it is a oneway road. I get on, and end up getting lost for nearly an hour. This is the 1 time, I wish I had the GPS which I returned after getting it from my husband as a gift. I am a half hour late in time to get kids from school and the bus. I have my older kids now helping me. I feel bad. Today was the last dose of the 1st cycle. We take a deep breath. 1 down. London will start with homecare. A nurse will come to draw labs off her port Mondays, and Thursdays starting next week. We are happy to have finished cycle 1. She has handled this well. We really are very lucky. Thankyou GOD for keeping her healthy through all of this. Sometimes people will ask me, " how is London doing?" and I reply," she's healthy, except for the cancer-(which you would never know she has looking at her).