Monday morning Mom went and did her dry run on the bus. Just to be really different Ryley wanted to go with her and Karlee was fine with staying home with Dad. Of course since Dad was working staying home with Dad entailed laying on the couch and watching TV. Just before Mom and Ryley got home Dad decided to take Karlee's temperature and it was getting a little high. After a couple more readings and a call to the oncology clinic they decided they wanted Karlee to come in as soon as possible.
We threw a few things together and Mom grabbed the bag we keep packed and they were off. This meant a day of watching TV and playing around the house for Ryley. He did really good; watched some TV, then a movie and played around a little. Around 2pm Mom phoned and told Dad that Ryley was supposed to have a sleepover. Dad was a little surprised as no one had told him anything about a sleepover. Fortunately everything worked out great as Viviana was willing to take Ryley around 3 and Dad could head up to the hospital for the evening.
Once Karlee got to the clinic her temperature seemed to come down to under 38 so that wasn't a concern, but she was very lethargic and bloated. Her stomach was very sore and distended so they wanted to keep her around for observation. Around 4:30 they finally moved us over to the unit and got her a room. It was a pretty quiet night as Karlee really didn't want to do anything but lay there and have her tummy rubbed.
Tuesday morning the doctors were going to let Karlee head home after she got her chemotherapy. Unfortunately the chemo kept getting pushed back later and later. Mom was convinced that they would be out of there by 11am. Dad was going to drive up and get them at 11, but when he talked to Mom they still hadn't given the chemo at 11, so he waited a little while before going up.
By the time Dad got up there her energy level had dropped again and her temperature was slowly creeping back up to the edge of the fever zone. We convinced her to go down to the Edward Sunshine room (play room) for group time, but all she wanted to do was sit with Mom. At least we all got out of the room for a little while and could visit with other parents, patients and the child life people. We finally got the chemo into her, but the doctor needed to take a look at her before we could get discharged. As the doctor was taking a look at her she finally hit a fever at 38.4. The doctor (not our regular doctor, but another Fellow), heard a little crackling in her right lung and wanted some blood tests, a urine test and an x-ray.
We quickly got all the tests done and then Grandma showed up with some stuff for Mom and Karlee to get them through the night. Grandma spelled us off for a while so we could go get some supper. As we were returning from eating the doctor talked to us in the hall. The urine and blood tests came back normal. There was some minor irritation on her right lung, but it didn't look bad enough to be pneumonia. He wanted to put her on some IV antibiotics over night and see how she responded. If everything goes the way he thinks it will he is going to discharge Karlee tomorrow with some oral antibiotics.
Dad headed home about 6:30 to pickup Ryley and get him into bed at a reasonable hour. He had a really good time at the sleepover and him and Alex played together well (for the most part). Once he got home he wanted to watch a little TV, then he had his bath and a couple snacks and was into bed at a reasonable hour. We had a message from Ryley's teacher this year. So far she sounds really nice on the phone. He is very excited to start school again, and hopefully that will help us with a little structure to our days.
We would like to again thank everyone for their prayers, good wishes and all the help we have been given. We really are blessed to have such wonderful people in our lives.
Love
Ron, Jennifer, Ryley and Karlee
Tuesday, August 31, 2010
Sunday, August 29, 2010
Chemotherapy Is Starting To Take It's Toll
Karlee doesn't seem to have been able to shake off this last round of chemotherapy as well as the first 2 rounds. She is in more discomfort and tires very easily. She is also getting pretty bloated from the steroids.
Saturday Dad and Ryley headed to Calaway Park to use the last 2 passes we bought earlier in the year. Ryley had a great time and managed to hit all the grownup rides that he was tall enough to go on. We even did the log ride twice (once with an hour wait in line). As always Ryley loved playing the games - and giving away Dad's money. On the way home we stopped at Fabricland to pick up some buttons for Karlee's new sweater that Mom was knitting her. Once we got home we walked over to Tom's House of Pizza for a late supper.
Karlee had a pretty uneventful day on Saturday. They went for a short walk and that seemed to tire her out for the rest of the day. She was in a fair bit of discomfort Saturday afternoon and evening. It seems like her stomach and bones ache most of the time now. Codeine is her new drug of choice, but even it doesn't seem to bring much relief. She still loves her Tylenol, but it masks her fever so we try and not give it to her often (on the doctor's orders). She helped Mom finish Buddy Bear and Princess Bear's beds. We finished cutting and screwing Princess Bear's bed on Friday so Saturday was staining them both.
Sunday morning we went to church as a family. Karlee has been talking about going to church so she was missing it. Dad was a little concerned about putting her in preschool with all the other kids. One cold bug will send her back to the hospital for a visit. Karlee had a really good time with the other kids and it was nice to be back in the church community again. The church has been wonderful helping us with meals and offers of anything else we could want. A few people asked if we still needed meals. With Karlee not feeling as good and with Jennifer starting back to work again frozen meals would still be appreciated. Tanya Chisholm is arranging these for us. If you would like to arrange something please contact her at 403 226-1875 or tanya.chisholm@blueworld.ca. Our lifegroup has been doing a great job with getting us fresh meals on clinic days - Thank you everyone.
Sunday afternoon was a pretty lazy day for Karlee. She didn't have much energy and was in a little discomfort. She spent most of the afternoon laying on the couch and asking Mom to rub her back or her belly. One new thing we have noticed is Karlee is now struggling to find words. She will repeat one work over and over which looking for the next word in the sentence. This is a new behavior and could be a side effect of the chemo or could just be a result of always being tired. Hopefully this corrects itself over time. Having said that we are going to ask Dr. Singh what his thought are on this and if the medications should be altered in any way.
Sunday evening Mom, Ryley and Karlee headed to Grandma's for Sunday dinner and Dad headed to Beaver registration and a group committee meeting. Monday Mom has to do a dry run with her bus and Tuesday is another clinic day. This one is just the CBC (complete blood count) and chemotherapy so hopefully they will be out of there is 3 hours or so.
Karlee had a pretty uneventful day on Saturday. They went for a short walk and that seemed to tire her out for the rest of the day. She was in a fair bit of discomfort Saturday afternoon and evening. It seems like her stomach and bones ache most of the time now. Codeine is her new drug of choice, but even it doesn't seem to bring much relief. She still loves her Tylenol, but it masks her fever so we try and not give it to her often (on the doctor's orders). She helped Mom finish Buddy Bear and Princess Bear's beds. We finished cutting and screwing Princess Bear's bed on Friday so Saturday was staining them both.
Sunday afternoon was a pretty lazy day for Karlee. She didn't have much energy and was in a little discomfort. She spent most of the afternoon laying on the couch and asking Mom to rub her back or her belly. One new thing we have noticed is Karlee is now struggling to find words. She will repeat one work over and over which looking for the next word in the sentence. This is a new behavior and could be a side effect of the chemo or could just be a result of always being tired. Hopefully this corrects itself over time. Having said that we are going to ask Dr. Singh what his thought are on this and if the medications should be altered in any way.
Sunday evening Mom, Ryley and Karlee headed to Grandma's for Sunday dinner and Dad headed to Beaver registration and a group committee meeting. Monday Mom has to do a dry run with her bus and Tuesday is another clinic day. This one is just the CBC (complete blood count) and chemotherapy so hopefully they will be out of there is 3 hours or so.
Thursday, August 26, 2010
Rough Night & Swimming
Karlee's had a rough couple of nights. She was complaining about her legs and her stomach hurting so she was up a fair bit and didn't get a lot of sleep. She was still in a fair bit of pain this morning so we called the primary nurse. She was an excellent resource (as always) and let us know that everything Karlee was experiencing was perfectly normal and that we shouldn't be afraid to give her codeine when she is in pain or discomfort. I think we are a little nervous about giving her a narcotic, but when you take a look at all the other drugs she is taking codeine is probably the least dangerous. It sounds like the vincristine (chemo) is causing most of her discomfort and the dexamethasone is causing the bloating and swelling that she is starting to experience.
She also replied back regarding our questions about some of the DNA testing. She forwarded the e-mail to Dr. Singh to ensure we got the correct information. Karlee has a translocation (12;21) in her chromosomal analysis. This particular translocation is associated with a good prognosis.
This afternoon we went and talked with Ryley's principal about what is happening with Karlee. Mrs. Kivi was very receptive to everything we said and was willing to do anything that was needed to help Ryley get through this time. We will be talking to Ryley's teacher early next week and will confirm with her all the details around how the school can assist.
After work we spent a little time working on Princess Bear's bed. Grandma finished all the mattresses and pillows for both bear's beds. Tomorrow we will try and finish building Princess Bear's bed and maybe get them both stained and ready for use.
Karlee had a pretty good afternoon and seemed to be much better this evening. We went down to Okotoks to go swimming. Karlee wasn't up to her usual activity level, but still hung in there and had fun. Hopefully we will be able to keep up some of our regular activities through the entire course of treatment.
She also replied back regarding our questions about some of the DNA testing. She forwarded the e-mail to Dr. Singh to ensure we got the correct information. Karlee has a translocation (12;21) in her chromosomal analysis. This particular translocation is associated with a good prognosis.
This afternoon we went and talked with Ryley's principal about what is happening with Karlee. Mrs. Kivi was very receptive to everything we said and was willing to do anything that was needed to help Ryley get through this time. We will be talking to Ryley's teacher early next week and will confirm with her all the details around how the school can assist.
After work we spent a little time working on Princess Bear's bed. Grandma finished all the mattresses and pillows for both bear's beds. Tomorrow we will try and finish building Princess Bear's bed and maybe get them both stained and ready for use.
Karlee had a pretty good afternoon and seemed to be much better this evening. We went down to Okotoks to go swimming. Karlee wasn't up to her usual activity level, but still hung in there and had fun. Hopefully we will be able to keep up some of our regular activities through the entire course of treatment.
Tuesday, August 24, 2010
Clinic Day
Today was our second clinic day. Ryley came with us today and found out how boring the hospital can be. Fortunately there was an incredible volunteer there who played video games with him and then had him play house with another little girl. Not only is the staff at the Alberta Children's Hospital incredible, but the volunteers are great.
Karlee has gained 1 kg (2.2 lbs) in the last week and she is starting to look a little puffy in the face. Dr. Singh said everything she is going through is normal. He was also very happy with the bone marrow aspirate results from last week. To put this all in perspective 90% of her cells were affected by leukemia prior to the start of treatment and after 1 week of treatment less than 1% of the cells were affected. The effectiveness of the chemotherapy and the DNA testing they did will determine the next 5 months of treatment. After we met with Dr. Singh he came out and chatted with Dad. They had gotten back some of the DNA testing and the results were all very favourable that she would respond very well to treatment.
So with the DNA testing and the response so far he is very optimistic about her prognosis and that she will not require as extensive of treatment. This is excellent news and give us even more reason to be optimistic.
Karlee was a trooper through all the treatment today. She chats with all the nurses and actually seems to enjoy the visits. Even the port access seems to be enjoyable to her as she gets something out of the "poke box" afterwards. When she leaves the clinic all the nurses say bye to her and she gives them a big wave and a "goodbye". I'm starting to see why kids miss going to clinic when they are done treatment. The staff is so incredible and makes the entire process completely painless (both physically and mentally) for the patient and the rest of the family.
Ryley went home with Uncle Randy, Aunt Catherine, Everett and Oliver. They were up there for Everett's pool therapy and were done around 10:30. Karlee really wanted to go to MacDonald's for lunch; she even told several nurses that is what she wanted to do, so we took her out. Dad was a little nervous having her in a restaurant with all those people and their germs. We tried to find a clean table mostly out of the way and hopefully Karlee's suppressed immune system will make it through. Looks like we are going to have to try and find a MacDonald's with an outdoor eating area if we are going to go out.
Karlee was a little tired when we got to Randy and Catherine's but she quickly perked up and went downstairs to play with Ryley and Everett. When we got home she was a little tired, but was still in a good mood. Around 4:30 or so her mood seemed to get a little worse and she started to feel a little worse. We had planned on taking them swimming this evening, but Karlee just wasn't up to it. Dorie brought over a great hot meal for us which we greatly enjoyed.
Dad and Ryley finished building the bed for "Buddy Bear" this afternoon and evening. Grandma is going to make him a mattress and then his bear will have a bed fairly similar to Ryley's. As soon as Karlee saw the completed bed she wanted to help build "Princess Bear" a bed. Looks like I will be making a trip down to Home Depot tomorrow to start another bed.
So with the DNA testing and the response so far he is very optimistic about her prognosis and that she will not require as extensive of treatment. This is excellent news and give us even more reason to be optimistic.
Karlee was a trooper through all the treatment today. She chats with all the nurses and actually seems to enjoy the visits. Even the port access seems to be enjoyable to her as she gets something out of the "poke box" afterwards. When she leaves the clinic all the nurses say bye to her and she gives them a big wave and a "goodbye". I'm starting to see why kids miss going to clinic when they are done treatment. The staff is so incredible and makes the entire process completely painless (both physically and mentally) for the patient and the rest of the family.
Karlee was a little tired when we got to Randy and Catherine's but she quickly perked up and went downstairs to play with Ryley and Everett. When we got home she was a little tired, but was still in a good mood. Around 4:30 or so her mood seemed to get a little worse and she started to feel a little worse. We had planned on taking them swimming this evening, but Karlee just wasn't up to it. Dorie brought over a great hot meal for us which we greatly enjoyed.
Dad and Ryley finished building the bed for "Buddy Bear" this afternoon and evening. Grandma is going to make him a mattress and then his bear will have a bed fairly similar to Ryley's. As soon as Karlee saw the completed bed she wanted to help build "Princess Bear" a bed. Looks like I will be making a trip down to Home Depot tomorrow to start another bed.
Sunday, August 22, 2010
Ryley's Back Home
Karlee had a pretty rough night on Friday. She had some pretty sore stomach and didn't sleep very well. Of course when Karlee doesn't sleep well Mom and Dad don't sleep well either. We had all planned on going to pick Ryley up at Camp Kindle, but with poor sleep and a sore tummy we decided that Karlee and Mom should probably stay home.
Dad took off and drove up to Water Valley. The camp was absolutely beautiful situated in a beautiful valley with lots of huge trees and very nice buildings. Ryley had a great time at camp and even behaved himself. He enjoyed the archery and the survival training. He learned to light a fire with 2 matches, build a stretcher and learned some basic first aid. They had a banquet and dance on the last evening. Ryley had a tattoo on his forehead, gel in his hair and his fingernails painted a nice blue (it was the only boy colour). On the drive home we stopped at Smitty's in Cochrane and had breakfast. Ryley is looking forward to going to camp next year already. He met some nice new friends and liked all his counselors and volunteers.
Ryley and Karlee were very happy to see each other. Ryley wanted to show us his fire making skills so we had a wiener roast. He had a great time lighting the fire.
Saturday night we went over the Lisa and Jared's for a BBQ and a few wobbly pops. After supper most of the adults had a try on the new trampoline. One of their friends tried a back flip and ended up landing on his head and neck. He heard something snap in his neck and had some tingling in his arm. We called EMS and they arrived with a scoop backboard to pick him off the trampoline and take him to the hospital. Today we found out that he broken 2 vertebra in his neck and was having surgery to take some of his hip bone and graft it to his neck to stabilize everything. Please add Gerry and Tina and their 2 children to your prayers. It sounds like he has a long recovery ahead on him.
Sunday Dad took Ryley to the wave pool in the morning and had a great swim. Later in the afternoon we did a little back to school shopping for Ryley and back to work shopping for Mom. Then it was off to supper at Grandmas with Uncle Randy, Aunt Catherine and Cousins Everett and Oliver. The chicken was excellent.
Karlee has her next clinic day on Tuesday and hopefully this will be an uneventful trip to the hospital.
Thursday, August 19, 2010
Some Great News!!!
Karlee got discharge from the hospital this morning with a clean bill of health. Her hemoglobin count was down to 61 on Tuesday and after the transfusion it was up to 106. Dr. Singh figures she will be good for at least 3 weeks without any new blood issues.
When we got home today we got a phone call from our Primary Care Nurse, JoJo. She first apologized for the mess that the blood transfusion turned into and told us that she would get Dr. Singh to provide a letter in Karlee's file. This should eliminate any future issues with getting blood. Then she gave us the great news. Karlee's bone marrow aspirate came back and she is officially in remission. She has less than 1% of her cells that are affected by the leukemia. Remission is considered less than 5% of the cells being affected. They normally expect to have children in remission within the first 4 weeks. This tells us that Karlee is responding very, very well to the treatment. How quickly she responds to the first 4 weeks of treatment also helps determines the next 5 months of treatment. This has also determined that next week Karlee just has to go in for her chemotherapy and doesn't need to have the bone marrow tested again.
Tonight Tanya and Chris came down for a visit. Tanya and Mom took off to the mall for a little girl time and Dad stayed home with Chris and Karlee. Karlee did a great job taking her medicine for Dad. Dad now seems to be the go to guy for medications
.
When we got home today we got a phone call from our Primary Care Nurse, JoJo. She first apologized for the mess that the blood transfusion turned into and told us that she would get Dr. Singh to provide a letter in Karlee's file. This should eliminate any future issues with getting blood. Then she gave us the great news. Karlee's bone marrow aspirate came back and she is officially in remission. She has less than 1% of her cells that are affected by the leukemia. Remission is considered less than 5% of the cells being affected. They normally expect to have children in remission within the first 4 weeks. This tells us that Karlee is responding very, very well to the treatment. How quickly she responds to the first 4 weeks of treatment also helps determines the next 5 months of treatment. This has also determined that next week Karlee just has to go in for her chemotherapy and doesn't need to have the bone marrow tested again.
Tonight Tanya and Chris came down for a visit. Tanya and Mom took off to the mall for a little girl time and Dad stayed home with Chris and Karlee. Karlee did a great job taking her medicine for Dad. Dad now seems to be the go to guy for medications
Wednesday, August 18, 2010
Not So Normal Blood Transfusion
Today was supposed to be a simple trip up to the clinic to get a blood transfusion. The primary care nurse said they would have the blood all ready to go and with the pre-meds and the transfusion we should be out in 4 to 5 hours. Dad decided to stay home and work and let Mom take Karlee up to the hospital by herself.
Unfortunately once they got to the hospital there was some discussion between the hematology department and the oncologists about what degree of washing that her blood needed. She needed the blood washed enough that her IgA deficiency didn't cause an issue, but not washed too much that it didn't help her low hemoglobin counts. Once they finally figured out what they were doing they also decided that she should go over to the unit as the clinic would be closed before she was done and they were not as well equipped to deal with a reaction.
So they admitted her to Unit 1 again about 3:30 this afternoon. She was given a ton of Benadryl to prevent any reaction, but it made her drowsy. Then about 4:20 they started giving her the blood. Everything went great and about 5:00 she perked up and wanted to eat. Wednesday is the best day to get admitted to unit 1. The Kids Cancer Care Foundation brings in pizza for all the patients and their families. Around 7:30 she was done with the blood and they gave her flush in the line. She went for a little bike ride around the unit and now is relaxing in the room and watching a little TV. If everything goes according to plan she should be out around noon tomorrow.
We called Camp Kindle tonight to check on Ryley and it sounds like he is having a great time and not having any problems. Can't wait to drive up there on Saturday and pick him up.
Unfortunately once they got to the hospital there was some discussion between the hematology department and the oncologists about what degree of washing that her blood needed. She needed the blood washed enough that her IgA deficiency didn't cause an issue, but not washed too much that it didn't help her low hemoglobin counts. Once they finally figured out what they were doing they also decided that she should go over to the unit as the clinic would be closed before she was done and they were not as well equipped to deal with a reaction.
So they admitted her to Unit 1 again about 3:30 this afternoon. She was given a ton of Benadryl to prevent any reaction, but it made her drowsy. Then about 4:20 they started giving her the blood. Everything went great and about 5:00 she perked up and wanted to eat. Wednesday is the best day to get admitted to unit 1. The Kids Cancer Care Foundation brings in pizza for all the patients and their families. Around 7:30 she was done with the blood and they gave her flush in the line. She went for a little bike ride around the unit and now is relaxing in the room and watching a little TV. If everything goes according to plan she should be out around noon tomorrow.
We called Camp Kindle tonight to check on Ryley and it sounds like he is having a great time and not having any problems. Can't wait to drive up there on Saturday and pick him up.
Tuesday, August 17, 2010
First Clinic Day and a minor complication
Today was our first "Clinic Day". We were at the clinic at the Children's Hospital for 8:30 this morning and not really sure what to expect. When we entered the clinic all the staff was again incredible and so friendly and welcoming. Jo Jo (our primary care nurse) was walking through the clinic when we came in and made us feel at ease right away. We were taken in right away and everything went according to plan.
Karlee had her port accessed and had blood taken. They then put her on fluids to ensure she was hydrated when they put her under general anesthetic. About 11:45 she was taken into the procedure room and they did the bone marrow aspirate and gave her another chemo injection into her spinal fluid. She woke up a little faster this time, but still wasn't in a big rush. She was in a much better mood when she did come around; just a little fussing and then she was looking for food. The steroids have greatly improved her appetite, which was expected.
She got her chemo into the port and after a little while, to ensure there was no reaction, we were free to go home. She was a little upset that they interrupted her lunch to give it to her. We had to stop at Ikea to get her a couple of dining room chair cushions as she now finds the chair a little hard due to some of the increased sensitivity of her body.
When we got home we got a phone call from Jo Jo with some news. She told us that despite how good Karlee was looking and how much energy she had her hemoglobin counts had fallen to a low level. She had been averaging in the low to mid 70's last week and today her count was 61.
Jo Jo told us that tomorrow morning we would have to bring her back for a blood transfusion. This really wasn't too unexpected as they have been preparing us for a transfusion since the diagnosis on August 6th.
Thankfully Allison brought us supper tonight and made it much easier to focus on what is happening with Karlee.
We still haven't heard anything from Ryley so we have to assume he is doing good at camp. Tomorrow night we can call and talk to the counselor and find out how he is doing.
Thanks for all your prayers and well wishes
Love
Ron, Jennifer, Ryley and Karlee
Karlee had her port accessed and had blood taken. They then put her on fluids to ensure she was hydrated when they put her under general anesthetic. About 11:45 she was taken into the procedure room and they did the bone marrow aspirate and gave her another chemo injection into her spinal fluid. She woke up a little faster this time, but still wasn't in a big rush. She was in a much better mood when she did come around; just a little fussing and then she was looking for food. The steroids have greatly improved her appetite, which was expected.
She got her chemo into the port and after a little while, to ensure there was no reaction, we were free to go home. She was a little upset that they interrupted her lunch to give it to her. We had to stop at Ikea to get her a couple of dining room chair cushions as she now finds the chair a little hard due to some of the increased sensitivity of her body.
When we got home we got a phone call from Jo Jo with some news. She told us that despite how good Karlee was looking and how much energy she had her hemoglobin counts had fallen to a low level. She had been averaging in the low to mid 70's last week and today her count was 61.
Jo Jo told us that tomorrow morning we would have to bring her back for a blood transfusion. This really wasn't too unexpected as they have been preparing us for a transfusion since the diagnosis on August 6th.
Thankfully Allison brought us supper tonight and made it much easier to focus on what is happening with Karlee.
We still haven't heard anything from Ryley so we have to assume he is doing good at camp. Tomorrow night we can call and talk to the counselor and find out how he is doing.
Thanks for all your prayers and well wishes
Love
Ron, Jennifer, Ryley and Karlee
Looking After Family
Sunday was a nice relaxing day at home. We spent a little time playing in the yard and doing a lot of nothing. The Kids Cancer Care Foundation and the Alberta Children's Hospital are doing an incredible job of ensuring the both Ryley and the rest of us are taken care of during this journey. We all know this is going to be a huge stress on the family and we realize we need to make sure Ryley is looked after emotionally. These 2 groups are making that so much easier to ensure he gets to do fun stuff, has someone to talk to and hopefully understands some of what is going on.
Sunday night Ryley and Dad dropped Karlee and Mom off at Grandma's place for supper and then we headed up to McMahon Stadium for the football game. We stopped in the Stamps store and bought Ryley a t-shirt and then headed for our seats. We had great seats in section I, row 3 on the east side of the stadium. Vince Danielsen was great; he brought Ryley a hat and was really nice to us. They even announced Ryley's name over the PA system. After watching the Stamps destroy the Eskimos (by 41 points) Vince took us down to the locker room. Ryley got lots of the players to sign his hat and his shirt. The players were all really nice (probably didn't hurt that they won) and super friendly. Ryley now has a hat and t-shirt that he can't wash or wear, but that are an incredible souvenir and reminder of a great evening. I can't say enough good things about Vince and the Kids Cancer Care Foundation.
Monday morning we were up early and headed to drop Ryley off for Camp Kindle. This is a camp put on by the Kids Cancer Care Foundation for cancer patients and their siblings. We were a little concerned about him going away to camp without Mom or Dad. He spent a little time playing with some of the other campers waiting to get on the bus and when the bus was ready to leave he wasn't even going to say good-bye to Dad. One of the quilting shops in Calgary made them all beautiful pillow cases with their names on them. They even managed to get Ryley one even though he wasn't confirmed to go to camp until Wednesday last week. I'm sure he is having a great time and will make some great friends.
Sunday night Ryley and Dad dropped Karlee and Mom off at Grandma's place for supper and then we headed up to McMahon Stadium for the football game. We stopped in the Stamps store and bought Ryley a t-shirt and then headed for our seats. We had great seats in section I, row 3 on the east side of the stadium. Vince Danielsen was great; he brought Ryley a hat and was really nice to us. They even announced Ryley's name over the PA system. After watching the Stamps destroy the Eskimos (by 41 points) Vince took us down to the locker room. Ryley got lots of the players to sign his hat and his shirt. The players were all really nice (probably didn't hurt that they won) and super friendly. Ryley now has a hat and t-shirt that he can't wash or wear, but that are an incredible souvenir and reminder of a great evening. I can't say enough good things about Vince and the Kids Cancer Care Foundation.
Monday morning we were up early and headed to drop Ryley off for Camp Kindle. This is a camp put on by the Kids Cancer Care Foundation for cancer patients and their siblings. We were a little concerned about him going away to camp without Mom or Dad. He spent a little time playing with some of the other campers waiting to get on the bus and when the bus was ready to leave he wasn't even going to say good-bye to Dad. One of the quilting shops in Calgary made them all beautiful pillow cases with their names on them. They even managed to get Ryley one even though he wasn't confirmed to go to camp until Wednesday last week. I'm sure he is having a great time and will make some great friends.
Saturday, August 14, 2010
Discharge from the hospital
Karlee got discharged from the hospital this afternoon; not a day pass, but an actual discharge. Yesterday afternoon the Oncology pharmacist came at spent about 30 minutes going over all the medications we needed to take home and administer on a regular basis. She is on Dexamethasone (Dex), the steroid, twice a day. She is also on Ranitidine twice a day to help coat and protect her stomach from the Dex. We still need to get her on 400 units of vitamin D once a day. Then on Wednesday, Thursday and Friday she will be on a compound antibiotic to help prevent any infection. We also have a couple of drugs that we can use as required for nausea. These drugs will continue on a regular basis for at least the next 23 days.
She also has to return to the hospital on days 8, 15, 22 and 29 for additional chemotherapy (some injections and some into the central line) as well as lumbar punctures and bone marrow aspirates. These are only supposed to be day visits for 4 or 5 hours assuming everything goes well.
Vivianna stopped by today and tidied the house and folded some laundry. It was great to come home to clean floors and a neat house.
Karlee was happy to be home, but wasn't so keen on the animals bugging her. Carlynn delivered a wonderful home cooked soup that was great. It was so nice to be able to eat together at the table and to be eating good food. Hospital food and takeout only go so far. We had a nice family walk and stopped to visit Mark, Vivianna, Alex and Ariana on the way. Karlee got to have a bath and then took her meds and had a snack before heading off to bed.
Tomorrow is supposed to be a nice relaxing day at home and then Ryley and Dad are going to head off to the football game.
She also has to return to the hospital on days 8, 15, 22 and 29 for additional chemotherapy (some injections and some into the central line) as well as lumbar punctures and bone marrow aspirates. These are only supposed to be day visits for 4 or 5 hours assuming everything goes well.
Vivianna stopped by today and tidied the house and folded some laundry. It was great to come home to clean floors and a neat house.
Karlee was happy to be home, but wasn't so keen on the animals bugging her. Carlynn delivered a wonderful home cooked soup that was great. It was so nice to be able to eat together at the table and to be eating good food. Hospital food and takeout only go so far. We had a nice family walk and stopped to visit Mark, Vivianna, Alex and Ariana on the way. Karlee got to have a bath and then took her meds and had a snack before heading off to bed.
First Day Pass (or 3 hour pass)
Today the Kids Cancer Care Foundation or Alberta had a coffee time in the Edwards Sunshine room on the Oncology Unit. It was a nice chance to talk to a few other parents and let the kids play together. Talking to other parents and hearing what they are going through if very therapeutic (at least I think it helps). They also have a social worker in there and they are always helpful to talk with.
This morning they also decided they wanted to challenge Karlee's supposed Penicillin allergy. Earlier this year she had a reaction while taking a cousin of Penicillin and they wanted to ensure they wouldn't have any issues if they had to give her Penicillin. They wanted to be able to use their standard antibiotic drug cocktail and it is their standard and it is the most efficient. They gave her 4 doses of progressively more Penicillin over about a 2 hour period. They had 2 doctors and a nurse in the room during each dose to ensure there was no reaction. Thankfully they got all 4 doses in and nothing happened so Karlee will be able to have the standard antibiotic cocktail they like to use.
Unfortunately this testing delayed her final chemo treatment of this round until later in the afternoon. This one was an injection into the large muscle of her leg. They finally administered the shot around 5pm when they had been hoping to do it closer to 11am. The plan this morning was the get the chemotherapy at 11, do the drug test around noon or 12:30 and then send us home on a 6 hour pass about 3pm. Due to the change in the order of the drugs and delays in getting everything started we ended up with a pass starting just after 6 with us having to return by 9 for blood work.
We decided that even a short break out of the hospital would be better than nothing and Karlee was really looking forward to getting off the Oncology unit. We drove down to Grandma's house to pick up Ryley and even the drive seemed to tire her out. Once she got home she again perked up and enjoyed seeing the animals and spending a little time at home. We arrived back at the hospital just after 9pm and got her checked back in and hooked up to the IV.
With a little luck they should be out of the hospital tomorrow afternoon and we should be free until we have to return to the clinic on Tuesday for another round of chemo and a bone marrow asperite. This will hopefully be a 4 or 5 hour day and then we will be home again.
Thank you everyone for your prayers and well wishes.
This morning they also decided they wanted to challenge Karlee's supposed Penicillin allergy. Earlier this year she had a reaction while taking a cousin of Penicillin and they wanted to ensure they wouldn't have any issues if they had to give her Penicillin. They wanted to be able to use their standard antibiotic drug cocktail and it is their standard and it is the most efficient. They gave her 4 doses of progressively more Penicillin over about a 2 hour period. They had 2 doctors and a nurse in the room during each dose to ensure there was no reaction. Thankfully they got all 4 doses in and nothing happened so Karlee will be able to have the standard antibiotic cocktail they like to use.
Unfortunately this testing delayed her final chemo treatment of this round until later in the afternoon. This one was an injection into the large muscle of her leg. They finally administered the shot around 5pm when they had been hoping to do it closer to 11am. The plan this morning was the get the chemotherapy at 11, do the drug test around noon or 12:30 and then send us home on a 6 hour pass about 3pm. Due to the change in the order of the drugs and delays in getting everything started we ended up with a pass starting just after 6 with us having to return by 9 for blood work.
We decided that even a short break out of the hospital would be better than nothing and Karlee was really looking forward to getting off the Oncology unit. We drove down to Grandma's house to pick up Ryley and even the drive seemed to tire her out. Once she got home she again perked up and enjoyed seeing the animals and spending a little time at home. We arrived back at the hospital just after 9pm and got her checked back in and hooked up to the IV.
With a little luck they should be out of the hospital tomorrow afternoon and we should be free until we have to return to the clinic on Tuesday for another round of chemo and a bone marrow asperite. This will hopefully be a 4 or 5 hour day and then we will be home again.
Thank you everyone for your prayers and well wishes.
Friday, August 13, 2010
A Spiritual Day
Thursday afternoon and evening was a pretty spiritual time for us. We had a visit from the pastor at the hospital. He played a little music for Karlee on his Mandolin and then spent a fair bit of time just chatting with us. I really enjoyed the conversation; he validated some of our concerns, talked through some stuff and then prayed with us.
I know I have said this many, many times, but all the staff at the hospital are incredible. We have several nurses everyday who are all incredible and great with the kids and the parents. We see several sets of doctors and specialists who are all willing to take the time to explain anything and answer as many questions as we can think of. There is a social worker who helps us figure out what is going on and provides us with a ton of information. We have a nutritionist who is helping us determine what Karlee is going to need when she gets out of the hospital. We have a primary nurse who is anything we need - a shoulder to cry on, a knowledgeable source of information, a friend and anything else we need. There are the child life staff who organize all the activities for the patients and siblings and do everything in their power to ensure both our kids are well looked after. The pastor is a very nice guy who will sit and chat or sit and pray or come and play some music. Lastly there are the volunteers... these people are more incredible than the staff. The give their time for free and are friends with the kids. This is great to give parents a little break or a chance to talk to doctors or each other without kids hanging around. There are also volunteer hosts for pizza night who are parents of former patients in the Oncology department. I am looking forward to meeting these people who have already gone through this experience and can provide some guidance and a friendly ear to talk to.
Thursday evening we listened to Kevin's sermon from the night before. He changed the plan when he found out what we were going through and did a very timely and powerful sermon. It is great having a church community behind you when you are going through something like this. If you want to listen to the sermon here is the direct link: Not On Your Life. Otherwise you can go to http://www.newhopecalgary.com click on Audio and Video Downloads and then select Not On Your Life.
Everyone has been so supportive of us through this journey. We have received tons of facebook messages, e-mails and phone calls. Unfortunately I have not been able to reply to every message, but please know that I have read them all and passed them on to Jennifer, Karlee and Ryley. Every message and every prayer has meant so much to us. It lets us know that we are not in this battle alone, but rather have an entire community behind us to assist us getting through everything. Please keep the prayers and messages coming and know they are helping us stay strong.
Thank you, thank you, thank you
Love
Ron, Jennifer, Ryley & Karlee
I know I have said this many, many times, but all the staff at the hospital are incredible. We have several nurses everyday who are all incredible and great with the kids and the parents. We see several sets of doctors and specialists who are all willing to take the time to explain anything and answer as many questions as we can think of. There is a social worker who helps us figure out what is going on and provides us with a ton of information. We have a nutritionist who is helping us determine what Karlee is going to need when she gets out of the hospital. We have a primary nurse who is anything we need - a shoulder to cry on, a knowledgeable source of information, a friend and anything else we need. There are the child life staff who organize all the activities for the patients and siblings and do everything in their power to ensure both our kids are well looked after. The pastor is a very nice guy who will sit and chat or sit and pray or come and play some music. Lastly there are the volunteers... these people are more incredible than the staff. The give their time for free and are friends with the kids. This is great to give parents a little break or a chance to talk to doctors or each other without kids hanging around. There are also volunteer hosts for pizza night who are parents of former patients in the Oncology department. I am looking forward to meeting these people who have already gone through this experience and can provide some guidance and a friendly ear to talk to.
Thursday evening we listened to Kevin's sermon from the night before. He changed the plan when he found out what we were going through and did a very timely and powerful sermon. It is great having a church community behind you when you are going through something like this. If you want to listen to the sermon here is the direct link: Not On Your Life. Otherwise you can go to http://www.newhopecalgary.com click on Audio and Video Downloads and then select Not On Your Life.
Everyone has been so supportive of us through this journey. We have received tons of facebook messages, e-mails and phone calls. Unfortunately I have not been able to reply to every message, but please know that I have read them all and passed them on to Jennifer, Karlee and Ryley. Every message and every prayer has meant so much to us. It lets us know that we are not in this battle alone, but rather have an entire community behind us to assist us getting through everything. Please keep the prayers and messages coming and know they are helping us stay strong.
Thank you, thank you, thank you
Love
Ron, Jennifer, Ryley & Karlee
Thursday, August 12, 2010
Karlee's Beaded Journey
Wednesday Karlee had a good day. She had lots of energy and was in a good mood most of the day. It was a pretty easy day as far as treatment went as she only had her steroids and some of the other meds that help keep her healthy. She gets one more chemotherapy injection in her leg either Thursday or Friday, then she is done with chemo until next Tuesday.
Ryley is going to be going to Camp Kindle from Monday until next Saturday. It is all put on by the Kids Cancer Care Foundation of Alberta and is out by Water Valley. He is very excited about going to camp and getting to do all the fun stuff out there. He leaves on the bus Monday morning and we can go an pick him up Saturday morning.
One of the most exciting things about Wednesday was starting "Karlee's Beaded Journey". This is something else the Kids Cancer Care Foundation of Alberta does for cancer patients. They are given a length of string and beads with their names on them, then they get beads for various events in their journey.
This is from the book she received:
Wednesday Ryley went on a road trip with Uncle Randy, Aunt Catherine, Everett and Oliver to the Royal Tyrrell Museum in Drumheller. Ryley is having a pretty good summer I think since he is getting to do lots of cool things. The Kids Cancer Care Foundation and the Calgary Stampeders have gotten him and Dad special tickets to the Stamps game against Edmonton on Sunday night.
Thursday Ryley had a play date with one of his friends so Dad didn't get up to the hospital until a little later in the day. Karlee was a little cranky after her nap, but in the morning she was dancing around singing "I'm So Happy!" The steroids can change her behavior, so we might be seeing the start of this.
Ryley is going to be going to Camp Kindle from Monday until next Saturday. It is all put on by the Kids Cancer Care Foundation of Alberta and is out by Water Valley. He is very excited about going to camp and getting to do all the fun stuff out there. He leaves on the bus Monday morning and we can go an pick him up Saturday morning.
One of the most exciting things about Wednesday was starting "Karlee's Beaded Journey". This is something else the Kids Cancer Care Foundation of Alberta does for cancer patients. They are given a length of string and beads with their names on them, then they get beads for various events in their journey.
This is from the book she received:
The Beaded Journey is a way to honour and tell the story of your treatment path through beads placed on a rope. Beads of different shapes and colours stand for the many important points, both medical and non-medical, along your treatment path. It is a chance for you to keep track of your time with us.
The journal is a way for you to record some of the special and meaningful stories that the beads stand for so that you can share those stories with others.
Karlee has 14 poke beads, 6 tests & scans beads, 2 chemo beads, 3 emergency room trip beads, but more importantly 19 visit beads (excluding Dad and Ryley). She loves picking out the beads and putting them on the string. Everyone will have to ask her to see her bead journey when they come to visit. They also provided Ryley with a start of his, but we have to supply his beads. After a quick trip to Beads and Plenty More yesterday he now has his bead journey and journal started as he is going to go through this journey with Karlee.
Wednesday Ryley went on a road trip with Uncle Randy, Aunt Catherine, Everett and Oliver to the Royal Tyrrell Museum in Drumheller. Ryley is having a pretty good summer I think since he is getting to do lots of cool things. The Kids Cancer Care Foundation and the Calgary Stampeders have gotten him and Dad special tickets to the Stamps game against Edmonton on Sunday night.
Thursday Ryley had a play date with one of his friends so Dad didn't get up to the hospital until a little later in the day. Karlee was a little cranky after her nap, but in the morning she was dancing around singing "I'm So Happy!" The steroids can change her behavior, so we might be seeing the start of this.
Wednesday, August 11, 2010
First Day of Treatment
I'm starting to wonder how many more blogs are going to start with the word First... hopefully we will fall into some type of routine soon and everything will make more sense.
This morning started with Karlee getting prepped for surgery and being taken upstairs around 11:30am. They put in her central line with the port and gave her the first injection of chemotherapy in her spine. She got back to the room around 1:45 or so. She was a little uncomfortable and threw up a couple of times. They were all fairly small ones with just a little coughing and gagging. They quickly got the central line working and started giving her fluids through there. They also gave her some anti-nausea drugs which seemed to get rid of all the vomiting.
Ryley was in the playroom on the unit during this time. He had a great time playing and doing some cool crafts. They also gave him the option to go to camp next week. It would be a 5 day sleep away camp with cancer patients and their siblings. We will get more information about this tomorrow and hopefully can get all the paperwork done. Ryley is very excited about getting to do this and it will be a good break for him. It sounds like he will get a fair bit of information during the camp as well as get to do all the regular camp stuff.
Karlee got her first dose of steroids during the afternoon. She did great with that too. We were concerned she wouldn't like the taste and wouldn't be willing to take them. Nurse Mary was excellent and got her to take them with very little fuss.
Karlee also got her first dose of IV chemotherapy this evening and did excellent with that too. She is on a few other drugs in order to help flush her kidneys of the dead cancer cells and to help control any pain. The staff is doing an excellent job trying to stay ahead of the side effects instead of waiting for them to happen and then treating them.
So far everything is going according to the treatment plan we were provided and her side effects are all within the normal range. On the positive side she is doing a little better with the central line port than most kids. She has very little pain around the site and is getting used to having the port in her chest. Right now the port has the needle attachment in it and it sticks out about an inch and a half from her chest, but when she isn't receiving treatment there will just be a little bump under the skin. We got a training session with "Chester" the mannequin to learn exactly what they did to her and to learn about the care of the line. Thankfully the care appears to be very, very minimal.
Tonight Karlee was going to have a midnight picnic and take her second dose of the steroids. Tomorrow we have a few less drugs I think so it should be a pretty good day. Ryley is heading to Drumheller with Uncle Randy, Aunt Catherine and the boys.
Ryley was in the playroom on the unit during this time. He had a great time playing and doing some cool crafts. They also gave him the option to go to camp next week. It would be a 5 day sleep away camp with cancer patients and their siblings. We will get more information about this tomorrow and hopefully can get all the paperwork done. Ryley is very excited about getting to do this and it will be a good break for him. It sounds like he will get a fair bit of information during the camp as well as get to do all the regular camp stuff.
Karlee got her first dose of steroids during the afternoon. She did great with that too. We were concerned she wouldn't like the taste and wouldn't be willing to take them. Nurse Mary was excellent and got her to take them with very little fuss.
Karlee also got her first dose of IV chemotherapy this evening and did excellent with that too. She is on a few other drugs in order to help flush her kidneys of the dead cancer cells and to help control any pain. The staff is doing an excellent job trying to stay ahead of the side effects instead of waiting for them to happen and then treating them.
So far everything is going according to the treatment plan we were provided and her side effects are all within the normal range. On the positive side she is doing a little better with the central line port than most kids. She has very little pain around the site and is getting used to having the port in her chest. Right now the port has the needle attachment in it and it sticks out about an inch and a half from her chest, but when she isn't receiving treatment there will just be a little bump under the skin. We got a training session with "Chester" the mannequin to learn exactly what they did to her and to learn about the care of the line. Thankfully the care appears to be very, very minimal.
Tonight Karlee was going to have a midnight picnic and take her second dose of the steroids. Tomorrow we have a few less drugs I think so it should be a pretty good day. Ryley is heading to Drumheller with Uncle Randy, Aunt Catherine and the boys.
Monday, August 9, 2010
First Day in the Oncology Unit
Last night (Sunday August 8th) about 11pm Karlee woke up in a fair bit of pain. We took her temperate and it came back at 37.4, but we still thought it would be a good idea to call the on-call Oncologist and see what he felt we should do. After a quick couple quick back and forth phone calls he decided, that since Karlee hadn't had enough to drink on Sunday that we should probably come in.
After a quick call to Grandma and getting everyone dressed we were on our way. Thankfully we had packed everything that evening so we would be ready to go Monday morning so we just had to grab some clothes for Ryley. We stopped and dropped of Ryley at Grandma's on the way up. He was a little upset as he really didn't understand what was going on. This whole experience is going to be just as hard on him as it is going to be on Karlee.
When we got to the hospital we were allowed to go directly to Unit 1 and were given a room immediately. The staff was once again incredible - the nurse was right there with us the whole time and the doctor was in within 15 minutes. It took a little while to get to emergency and get the IV line in, but we had her on fluids and codeine by 2:30. Hopefully she doesn't have too many serious pain issues as the codeine didn't taste good at all. She settled down pretty quickly after that and got some sleep. Jennifer and myself didn't have a great night as we both tried to sleep in an little single bed with a thin mattress. I got Jennifer's feet in my face and she got mine in hers as that seems to be the best way to sleep (or at least lay as I'm not sure if anyone slept much).
Monday morning Karlee was in a little pain again and had a bit of a fever, but they treated that with Tylenol. We also found out that their Tylenol doesn't taste the same as ours - $10 later at the hospital pharmacy and Karlee was happy.
We got to see a bunch of doctors today. We started out with the pediatric team from the Oncology unit to assess her general health, then the Oncologist, followed by both those teams together doing rounds. I was a little surprised to see that rounds are exactly like they appear on Grey's Anatomy. We then saw the Infectious Disease doctors to determine what risk Karlee was at due to the possible allergic reaction to one of the antibiotic families. We then briefly met the Social Worker on the unit and later in the day we met with her again. We also say the hematologist and the surgeons today.
So what does all this mean???
The infectious disease team determined that Karlee probably does not have a penicillin allergy and will use the standard (and most effective) antibiotic cocktail. They will monitor her the first time they need to give this to her, but they aren't too concerned.
The surgeons are going to put in a central line with a port Tuesday at some point. She is on the "Red List" which means she doesn't have a time booked, but if someone is running late, or is cancelled she will get in at that point. If she doesn't get in by a cancellation she will get in once the first OR is finished. The central line will make giving drugs and taking blood much easier. The port will allow Karlee to have nothing sticking out of her chest. There will be a small port under her skin which the clinic can access with a topical and a small incision. When she in not receiving treatment there will be a small bump under her skin. She will not have any issues with having a bath or going swimming.
The social worker was also very helpful. She talked to us about some of the things the unit could do to help Ryley. We also talked about some of the things we could do to assist him and some of the resources that are available to help. Hopefully we will be able to use the available resources to minimize the impact on our family. She also provided us with a book that we have to spend some time reading and learning about.
The Oncologist and his boss met with us, the social worker and one of the undergrad nurses. They went through what the plan is for treatment and all the possible side effects for the first 4 weeks. After the first 4 weeks we will have much more information about the leukemia and how she is responding to the treatment and that will allow us to determine the next 2.5 years of treatment. The first 4 weeks are going to be pretty intense, but if we end up with the best case scenario we will be in the hospital less time than we thought. She will be getting a combination of steroids, chemotherapy, injections in her muscles and injections in her spine. By day 4 of treatment she could be out of hospital, but it could be a little longer. This could mean they will be out by Friday or more likely Monday. Then it sounds like we will be back at the hospital once or probably twice a week until the end of the 4 weeks.
Later Grandma brought Ryley up to the hospital. He got to go to the zoo in the morning with Aunt Catherine, Everett and Oliver and then spent some time doing crafts with Grandma. He came up to the hospital and got to go to movie night at the hospital. Tonight was "The Tooth Fairy". Jennifer took him up there and let me spend a little time with Karlee. He enjoyed the Mom time and the movie and I think Karlee enjoyed walking around the unit and reading books with Dad. Karlee wants to go for a walk outside so bad, but they wont let her out of the unit.
Since I have been up since Sunday morning with only a few hours of sleep I should probably get some sleep.
After a quick call to Grandma and getting everyone dressed we were on our way. Thankfully we had packed everything that evening so we would be ready to go Monday morning so we just had to grab some clothes for Ryley. We stopped and dropped of Ryley at Grandma's on the way up. He was a little upset as he really didn't understand what was going on. This whole experience is going to be just as hard on him as it is going to be on Karlee.
When we got to the hospital we were allowed to go directly to Unit 1 and were given a room immediately. The staff was once again incredible - the nurse was right there with us the whole time and the doctor was in within 15 minutes. It took a little while to get to emergency and get the IV line in, but we had her on fluids and codeine by 2:30. Hopefully she doesn't have too many serious pain issues as the codeine didn't taste good at all. She settled down pretty quickly after that and got some sleep. Jennifer and myself didn't have a great night as we both tried to sleep in an little single bed with a thin mattress. I got Jennifer's feet in my face and she got mine in hers as that seems to be the best way to sleep (or at least lay as I'm not sure if anyone slept much).
Monday morning Karlee was in a little pain again and had a bit of a fever, but they treated that with Tylenol. We also found out that their Tylenol doesn't taste the same as ours - $10 later at the hospital pharmacy and Karlee was happy.
We got to see a bunch of doctors today. We started out with the pediatric team from the Oncology unit to assess her general health, then the Oncologist, followed by both those teams together doing rounds. I was a little surprised to see that rounds are exactly like they appear on Grey's Anatomy. We then saw the Infectious Disease doctors to determine what risk Karlee was at due to the possible allergic reaction to one of the antibiotic families. We then briefly met the Social Worker on the unit and later in the day we met with her again. We also say the hematologist and the surgeons today.
So what does all this mean???
The infectious disease team determined that Karlee probably does not have a penicillin allergy and will use the standard (and most effective) antibiotic cocktail. They will monitor her the first time they need to give this to her, but they aren't too concerned.
The surgeons are going to put in a central line with a port Tuesday at some point. She is on the "Red List" which means she doesn't have a time booked, but if someone is running late, or is cancelled she will get in at that point. If she doesn't get in by a cancellation she will get in once the first OR is finished. The central line will make giving drugs and taking blood much easier. The port will allow Karlee to have nothing sticking out of her chest. There will be a small port under her skin which the clinic can access with a topical and a small incision. When she in not receiving treatment there will be a small bump under her skin. She will not have any issues with having a bath or going swimming.
The social worker was also very helpful. She talked to us about some of the things the unit could do to help Ryley. We also talked about some of the things we could do to assist him and some of the resources that are available to help. Hopefully we will be able to use the available resources to minimize the impact on our family. She also provided us with a book that we have to spend some time reading and learning about.
The Oncologist and his boss met with us, the social worker and one of the undergrad nurses. They went through what the plan is for treatment and all the possible side effects for the first 4 weeks. After the first 4 weeks we will have much more information about the leukemia and how she is responding to the treatment and that will allow us to determine the next 2.5 years of treatment. The first 4 weeks are going to be pretty intense, but if we end up with the best case scenario we will be in the hospital less time than we thought. She will be getting a combination of steroids, chemotherapy, injections in her muscles and injections in her spine. By day 4 of treatment she could be out of hospital, but it could be a little longer. This could mean they will be out by Friday or more likely Monday. Then it sounds like we will be back at the hospital once or probably twice a week until the end of the 4 weeks.
Later Grandma brought Ryley up to the hospital. He got to go to the zoo in the morning with Aunt Catherine, Everett and Oliver and then spent some time doing crafts with Grandma. He came up to the hospital and got to go to movie night at the hospital. Tonight was "The Tooth Fairy". Jennifer took him up there and let me spend a little time with Karlee. He enjoyed the Mom time and the movie and I think Karlee enjoyed walking around the unit and reading books with Dad. Karlee wants to go for a walk outside so bad, but they wont let her out of the unit.
Since I have been up since Sunday morning with only a few hours of sleep I should probably get some sleep.
Saturday, August 7, 2010
Hair Cut
Today Karlee (with a little help from us) made a huge decision to cut her hair for the first time; she has only had her hair trimmed up until this point. Since her hair was going to fall out in the next 2 weeks or so we talked to her about donating her hair to help another little girl have a pretty wig.
She was a real trooper and Beaners did a great job helping us get in on short notice and giving us an isolated area to help prevent any germs. She ended up with a beautiful short bob with some lovely pink streamers in it.
We are going to write a letter and send her hair to one of the great organizations that help kids with wigs when they are going through this incredible ordeal.
She was a real trooper and Beaners did a great job helping us get in on short notice and giving us an isolated area to help prevent any germs. She ended up with a beautiful short bob with some lovely pink streamers in it.
We are going to write a letter and send her hair to one of the great organizations that help kids with wigs when they are going through this incredible ordeal.
Diagnosis and the start of the journey
We have now let everyone know what has been happening with us over this last week on Facebook, but we figured there were some people who might like a little more detail.
Karlee has been having server stomach pains and fever about every 2 weeks for the past 3 months. She has been in the emergency ward at the Children’s Hospital twice. The first time they thought it was interception of the bowel that had corrected itself by the time we saw the surgeons. At that point they said there was a very, very strong possibility that it would never happen again. The next time it happened the doctor’s diagnosis was constipation (even though she was going regularly). We went down that road with BeneFiber and Lax-A-Day, but the episodes continued.
On Saturday July 31st she again had an episode that seemed to be particularly painful. We dropped Jennifer and Karlee off at the Emergency Department and got a doctor who was very interested in getting to the bottom of the issues. She was admitted to the hospital on Saturday and the tests started. We all spent the majority of the week at the hospital waiting with her. Being a long weekend they couldn’t bring in most of the specialists until Tuesday or Wednesday. We dealt with many teams (our Pediatricians, the GI team (gut doctors) and the oncology team). They went down many different paths including interception of the bowel, mono, infectious diseases, tumours and leukemia. We did find out that she is IgA deficient (I made several Sobey’s jokes at this point). Wednesday we met with the oncologist and they felt the chances of it being cancer were very low, but they were waiting for the results of the flow cytometry testing. On Thursday the regular doctors returned again and said the flow cyometry testing led them to believe it was leukemia and that further testing was required.
Friday morning Karlee was put under for a couple of tests. They did a bone marrow aspiration and a lumbar puncture (spinal tap). The procedure was completed in about 15 minutes without any incidents. Karlee took a little while to wake up from the aesthesia, but that could have been because she wasn’t in any pain (good thing). Once she got back up to her room she was jumping around in no time. About 3 o’clock the oncologist came back and delivered the bad news that we had been expecting. Karlee has Acute Lymphoblastic Leukemia.
They decided that we could go home for the weekend on a pass and can return to the oncology unit on Monday morning.
Monday they are going to do an assessment of Karlee to ensure she is well enough to start treatment and to give us information about the next 2 and a half years. Tuesday they will put a central line in so they can administer medicine and draw blood much easier. It will have a value just under her skin on her chest and they will access it with a topical. She will still be able to go swimming and have a bath and everything else. Tuesday they will also start treatment. Her first set of treatments will be 4 days and then we will hopefully be home again.
Once Karlee starts treatment her stomach pain should be gone within 1-2 weeks. They think that the pain was caused by the interception in the bowel and that the interception is caused by the lymph nodes in her bowel swelling. She should be in remission within the 1-2 week timeframe as well. Remission is considered less than 5% of the bone marrow cells being infected with the leukemia. The first 4 weeks of treatment we will be in and out of the hospital on a very regular basis. After the first 4 weeks we will have 5 months of weekly visits and treatments. During this time there will be many ups and downs that may require hospitalization. After our first 6 months we then move into the maintenance phase where she goes monthly for treatment for another 2 years.
It looks like we have a long road ahead of us, but at the same time the prognosis is very good. The permanent remission rate is 95% for childhood leukemia and Karlee has several factors in her favour being young and health at the start of treatment.
We would ask that if people are going to call they call before 9pm our time and don’t feel slighted if your call goes to voice mail. We might be screening calls, dealing with issues or at the hospital. We are also going to use the Internet and e-mail to keep everyone up to date on what is happening and where we are at with treatment. If you wish to be on the e-mail distribution list please reply to this e-mail or send us an e-mail to ronlewis@telusplanet.net if you are reading this on facebook.
Thank you all for your support and prayers
Ron, Jennifer, Ryley and Karlee
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