Trip to the Hospital and Admission to Unit 1

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

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.

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.

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.

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.

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

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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.