Monday, September 27, 2010

Family Camp - Incredible Experience

Friday afternoon was a gong show around the Lewis house.  We had to drop off the dog and her kennel at Grandma's house and pick up some soup from Sandra all while trying to get everything packed for camp.  In both the spring and the fall the Kids Cancer Care Foundation of Alberta offers a camp for the families of children affected by cancer.  About 5:30 we headed off to Camp Kindle just outside of Water Valley.  Karlee was asleep before we were 5 minutes out of the city and slept until we got to Cochrane.  After a quick stop there for drinks we were on the road again and got to camp just before 7:00pm.


Right when we arrived we felt welcomed by the staff and the volunteers.  They looked after us from the moment we arrived until we left.  We checked in and handed over all of Karlee's drugs and then were shown to our room.  We had 3 or 4 people helping us carry everything to the room.  If I had let them I wouldn't have had anything left to carry at all.  We were assigned a volunteer to assist us with any questions or concerns we had over the weekend.  Kevin was very helpful as were all the volunteers and staff.


We had a light supper followed by the pie contest.  While the parents were getting to know each other the kids were in the basement playing dress-up.  Karlee was a little tentative the first night to go get in the middle of everything with all the kids so Ryley stayed with her on the stairs.  We all then headed down the hill to the campfire.  The staff running the campfire did an incredible job with the songs.  Ryley was singing along and doing the actions that he remembered from summer camp.  Karlee really enjoyed the songs and was talking about them for most of the weekend.  After the campfire we got the kids settled and then went for parent time.  Ashley and Kevin looked after all the kids in the dorm and managed to get them all to settle down.  Parent time started out with everyone sitting around and getting to know each other a little.  Many families have been coming for years so they were just reconnecting with friends they have had for years.  They made 2 presentations to us about the KCCFA.  The first one was about their bike ride to raise money and how families of children with cancer could assist by volunteering and telling their stories.  The second presentation was about the future plans for the camp.  Both were very interesting and informative.  Most people (us included) headed to bed after this to get some sleep.


Saturday morning all the kids actually slept in until about 7:30.  We had 5 kids in our room and they were all between 7 and 2.5 years old.  Karlee had 2 little girls to play with and Ryley met Ty who was about a year younger than him.  I was very surprised when I heard the first one awake and it was that late.  Breakfast was great with lots of bacon, eggs, hashbrowns and cinnamon buns.  We then had a bunch of different activities we could partake in.  Karlee and Mom went and made a beautiful wreath and then headed over to the spa.  Karlee got her nails painted and Mom got a massage.  Dad and Ryley headed down to the giant swing.  It was an incredible rush when they drop you from 53 feet in the air.  At the peak of your first swing you are 75 feet in the air over the creek.  Ryley was white and looked ready to freak out during the first 2 back and forths.  Once he realized he wasn't going to fall off he loved it and was laughing and having a great time.  Next we all went to the arts and craft building to make some bracelets.  Mom made a hemp bracelet while Dad failed miserably at his attempt.  Ryley started a friendship bracelet and Karlee made a beaded necklace.


After lunch the kids went off to their activities and the parents went on a hike with the Camp Director up to the SunSeeker cabin.  This is where the older kids get to camp during the summer.  They have done a lot of work up there and the view is just incredible.  The best part of the hike was again talking to the other parents and finding out what they have been through and how they have dealt with it.  There is really no one else that can understand what it feels like to hear an oncologist tell you "Your child has cancer."  Everyone there can at least relate to those first 4 words.  I was looking forward to the activities, but wasn't sure about the connections we would make.  After the first few hours talking to these people I quickly realized that the other parents were the real reason we were there.  We met parents and children who were going through exactly what we were, that had gone through very different cancers and that had lost children to cancer.  We gained knowledge and strength from everyone and how they had handled everything.  We are hoping that some of the connections we made there will last for a long time and will be able to help us on our journey.  Of course at some point in the future it would be great for us to be able to help another family on their journey.


We spent a little time before supper making floating lanterns for the Harvest Moon Festival.  The kids loved doing the craft and knowing they would get to see their lanterns later that evening.  Supper on Saturday was a turkey dinner with all the trimmings served to us by the volunteers and staff.  The evening entertainment was DJ Fish (the official DJ of the Kids Cancer Care Foundation of Alberta) and a dance in a tent by the camp fire.  Everyone had a great time dancing and having fun with the kids.  Karlee had a great time dancing with Taelynn and Danika.  Taelynn is the same age and has the same type of Leukemia as Karlee and just entered the maintenance phase.  Even Ryley joined in with the girls on a number of songs.  He made sure to dance with both the girls and was a perfect little gentleman.  The kids had a great time and Mom and Dad even got to dance a couple of songs.  Saturday night, once the kids were in bed, was another chance for the parents to sit and relax and talk again.


Sunday morning was another great breakfast and then off to the morning activities.  We had a bunch of mini games to complete to earn prizes to decorate Dad up as a pumpkin.  Once we finished all the games we decorated Dad up and he completed in the Pumpkin Pageant.  The kids had a great time and Dad enjoyed looking funnier than normal.  After that Dad, a few extra kids and a volunteer went for a hike up to the low ropes course.  Karlee had earlier been complaining about her legs being tired, but she hiked up the side of the mountain without any issues.  After the hike it was lunch and then packing up to leave.


After we left the camp we headed up to Bergen for a visit with Frances and Roland at their Chalet.  It was nice to see them again and to sit on the porch out of the rain.  We were on our way home around 4 and after a quick supper at McDonald's in Cochrane we got home around 6.  It was a great weekend that both the kids and Mom and Dad really enjoyed.

Wednesday, September 22, 2010

Great Start to the Week

Karlee has had a great start to this week.  The swelling due to the steroids has now started to go down and she is looking much better.  Her activity level has also increased greatly.  She has been walking to or from school to get Ryley and has even run again.  It is so great to see her starting to get back to her old self.


Monday night Mom got to go out with the girls to dinner and a movie.  She really enjoyed getting out and away from everyone for a night.  Dad and the kids had a great night.


Tuesday was Karlee's clinic day.  She had a fairly simple day with just the intrathecal injection; the injection of chemotherapy into her spine.  We got some great news from the doctor during her consultation.  Karlee got clearance from him to go to family camp this weekend.  Since all of the deadlines had already passed we had to rush around and fill out paperwork to ensure we could go.  So Friday night we are heading out to Camp Kindle by Water Valley and will be spending 2 nights with other families who have been affected by childhood cancer.  Both Karlee and Ryley are really looking forward to going out there.  This is the same camp Ryley was at for a week this summer so he knows what is there and how much fun there is to be had there.  Karlee is just excited to get back out camping again.


Tuesday was also the first Beaver meeting of the year.  Ryley enjoyed himself and Dad had a great night.  Everything ran smoothly and efficiently.  That is most unusual for the first meeting of the year.  Hopefully this is a good sign for the way the rest of the year is going to go.


Wednesday was the best day Karlee has had in a long, long time.  She was running home from school at lunch with Ryley and rode with Dad to school to pick him up at the end of the day.  Wednesday night was Ryley's first hockey evaluation of the year.  He had fun out on the ice and that is what we are trying to encourage.

Sunday, September 19, 2010

Mysterious Fever

Around supper time on Wednesday Karlee started to complain of the headache and we determined that she was again running a fever.  Ryley and Dad headed to hockey right after supper while Karlee and Mom headed over to Life Group.  Karlee played at Life Group and seemed to be doing good.  When we all got home Karlee was again cranky and her fever was back up again.  We gave her a bath and her chemotherapy and she went right to sleep.  We did call the on call oncologist, but he was unreachable so we ended up getting a call from the emergency room pediatrician.  We explained what was happening to him and he was fine with letting her stay at home and monitoring her overnight and then calling our primary nurse in the morning.

She ran a fever most of the night, hitting a high of 40.5, which resulted in her not sleeping well and seeming to be in pain.  The pain might just be her headache due to the fever and general weariness from the fever.  Thursday morning Karlee ended up staying home with Dad and Holly took Ryley to school while Mom did her bus run.  When Mom got back we called the clinic and they suggested that we should probably bring Karlee in to get her checked out.  They ended up giving her an IV dose of antibiotics and some fluids.

This fever seems to have several oncologists stumped.  One of the theories is that she could be fighting something that they can not determine.  She does not have any swelling in her organs that they can feel and all of them seem to be working fine.  They have taken several blood cultures and nothing is growing yet.  Another thought is she may be having an unexpected reaction to the chemotherapy.  They can't really tell which drug would be causing the fever since she gets it intermittently, without a good pattern between the fever and the drugs.

Thursday night was another bad night.  Karlee was awake many times throughout the night with a high fever and some pain.  Mom spent most of Thursday night in Karlee's bed sleeping with her.  Friday around noon was Dad's turn to head up to the hospital with Karlee for another dose of antibiotics.  The clinic was very busy on Friday and we ended up waiting over an hour before we got a bed.  Fortunately that meant that once we got in the pharmacy had sent up the antibiotics and we got the drugs and some fluids into her in a reasonable time.  Friday night was again another bad night for everyone.  Karlee was again running a fairly high fever and experiencing some discomfort.  We somehow made it through the night with enough sleep for everyone to function.
Saturday morning and early afternoon was a blur of trying to get ready for Karlee's birthday party.  We had about 16 people, including ourselves, over for supper and cake and presents Saturday.  Karlee did pretty good, but she did have a little nap in the middle of her party; there might have been a little too much playing before the party.  Everyone who came to the party did an incredible job of helping out and making everything so easy for us.  They got everything out and ready to go without any help from us.  Karlee enjoyed everyone singing to her and both Ryley and Karlee enjoyed opening their presents.
After everyone left both kids had to test out their new Wii remotes with their own games.  Finally they both got to bed.  Karlee again had a bad night and Mom ended up spending most of the night in her bed.  Sunday morning we called the on call oncologist again to see about the fever and some diarrhea that had developed over night.  The oncologist wasn't too concerned about the fever, but was more concerned about the diarrhea and the amount of fluids that Karlee was getting.  With diarrhea being one of the side effect and kidney issues being another they want to ensure that she is not becoming dehydrated.  The oncologist again wanted to examine Karlee to see if any treatment was required.

Mom took Karlee up to the hospital so Dad could take Ryley to hockey at 3pm.  When they got to the hospital they accessed Karlee's port and gave her some fluids.  The doctor examined her and figured it wouldn't hurt to give her some additional antibiotics by IV.  Everything went well and they were out of the hospital a little after 2pm.

Ryley had a good time at hockey again today except for the backward skating drills.  Obviously we didn't spend enough time on skating backwards during the last hockey season.  Oliver and Everett had a good time watching Ryley play hockey.  Afterwards we went to Toy R Us to spend some of Ryley's birthday money.  He bought a couple more Lego games and Karlee got some Barbies.  Sunday evening brought our standard dinner at Grandma's house with the family.

Hopefully next week will be a little quieter and Karlee will get back to her normal self.

Tuesday, September 14, 2010

Start of Consolidation Phase

Today we the started of the second phase of treatment.  Karlee finished the Induction protocol last week and this morning we were back at the hospital to find out what the plan would be for the next 5 months of treatment.  The morning was a little crazy with trying to get Karlee and Ryley ready to be out the door by 8am.  We dropped Ryley off at the neighbors to take him to school and headed up to the hospital with Karlee.  About 3/4 of the way up there we realized that we had forgotten the Ametop (numbing cream for her port access).  There was nothing we could do at that point except get some on when we go there and wait for it to work before they could access her.


When we got up there Karlee had gained another 0.6 kg (a little over a pound).  She should start to lose weight shortly as her water retention starts to drop with the discontinuation of the steroids for a while.  We got to see Dr. Singh right away without any wait (very nice).  He went through the 3 different criteria that are used to determine the rest of the treatment and how favourable her results were on all 3.

  1. She was a very rapid responder as she was down to less than 1% of cells being blast cells within the first week.
  2. Her genetic testing had a very favourable translocation in her chromosomal analysis.
  3. Her leukemia is undetectable using the most advanced testing they have available.  They are able to detect blast cells at levels of 1 in 10,000 cells and they could not detect any in her bone marrow.
This resulted in her being moved to the lowest risk level and determined her course of treatment for the next 5 months.  The next phase is going to be one month in length and is called Consolidation.  She will then move into 2 months of Interim Maintenance followed by 2 months of Delayed Intensification.

The Consolidation Phase involves various types of Chemotherapy.  Today she got one dose of Vincristine and a spinal injection of Methotrexate.  She also started on her first oral chemotherapy today.  She is getting 1mL daily of 6-mercaptopurine (6MP) for the next 28 days.  Over the next 2 Tuesday's she only gets the spinal injection of Methotrexate.

Today we realized how fortunate we are to have such a cooperative little girl.  While we were in there today there were 2 little girls, one a little older than Karlee and one a little younger.  Both screamed and fussed while they were getting their ports accessed.  Karlee on the other hand helps the nurse and enjoys counting the cleaning and the actual poke.  We were out of the hospital just after 1 today and were home in time for Mom to do her afternoon run and for Dad and Karlee to pick up Ryley.

This evening was the first real Beaver activity of the year with a trip to the Calgary Corn Maze.  Ryley and Dad had a great time getting lost in the big maze, bouncing on the giant pillows and painting their fingers in one of the little mazes.  They have a petting zoo there and they had a brand new baby goat that had been born in within the last 3 hours.

There are a few interesting little things that most people probably don't realize.
  • For 48 hours after Karlee receives chemotherapy we have to use gloves to wipe her when she goes to the washroom.  This is due to the toxins that are being expelled from her body.
  • When Karlee receives chemotherapy in the hospital the nurses have to wear a full blue gown, heavy duty gloves and goggles.  This is to protect them from repeated exposure to chemotherapy.
  • Karlee removes her own bandage when they deaccessing her port.  She unpeels the large clear bandage and pulls off the tape so all the nurse has to do is remove the needle. 

Sunday, September 12, 2010

Results of the First 29 Days of Treatment

Friday morning we got a call from Dr. Singh with the results of Karlee's day 29 bone marrow aspirate.  The goal was to have the blast cells down to 0.1% or 1 blast cell in 1,000 cells.  Karlee's results far exceeded that number.  They were unable to see any blast cells in her flow cytomery test.  This does not imply that there are no blast cells but rather the tests do not allow them to see the cells.  They assume that there are still 1 in 100,000 or 1 in 1 million blast cells.  Karlee now has met all 3 criteria to move her into the low risk category of the standard risk.


Obviously this is great news, but it does not change the length of treatment.  She still has 5 more months of treatment, but this treatment will be altered by the new low risk categorization.  We will find out more details about this on our clinic day on Tuesday.  She will also have another 2 years of maintenance after the treatment.


This was a busy weekend for us.  Friday we had a craft fair to sell slippers at the Beverly Centre.  Jennifer did very well selling 6 pairs of slippers.  Jennifer has decided to donate $5 per pair of slippers to the Kids Cancer Care Foundation of Alberta.  This group does an amazing job of supporting patients and their families through this journey.  Please check out their website for more information - www.kidscancercare.ab.ca 


Saturday morning we started by going to a blood donor clinic for both Mom and Dad to donate blood.  Even though both have been regular donors for a number of years it seems a little more important now that Karlee will be needing transfusions on a regular basis.  We would like to encourage anyone who is eligible to donate blood to book and appointment and give blood.  They say people are more likely to give blood if they know someone who requires blood on a regular basis.


After giving blood we started the hockey season with Ryley.  He has a number of practice sessions prior to the evaluations.  This is a great idea so all the kids get a chance to get used to skating again prior to being placed on teams.


Sunday started off with hockey again.  Then we were off to Ryley's birthday party at the Deerfoot Inn and Casino.  They have a great pool that they let the kids (and parents) play in for an hour and then we went to the dining room to have food, cake and open presents.   We had 6 kids and 3 parents in the pool.  A great time was had by all.  Ryley got a bunch of new Lego and had a great time with his friends.  Grandma looked after Karlee while we were at the party.  They spent the afternoon colouring and playing.


After the party we went over to Grandma's for Sunday dinner.  This week we had a nice treat as Uncle Syd and Aunt Lol from Vancouver joined us for supper.  It was great to see them again and spend some time visiting with them.  Unfortunately Everett and Oliver had colds so they couldn't join us as Karlee's counts are low right now.


Tomorrow (Monday) morning Mom has to take Karlee to the Rockyview to get some blood taken.  They want a CBC (Complete Blood Count) prior to starting treatment on Tuesday.  Tuesday morning we are going in for a consultation and to sign the next round of consent forms with Dr. Singh.  We should get a lot more details about what the next 5 months will look like in that meeting.


Once again we would like to thank everyone for everything they have done for us.


Love
Ron, Jennifer, Ryley and Karlee

Wednesday, September 8, 2010

FAQs

Karlee had a pretty good day today.  She was a little tired and sore this morning and was complaining about her tummy hurting.  About 10am she had a little nap and somewhere around noon she perked up a little and had a much better afternoon and evening.  She is still very tired by the end of the day and is ready for bed around 7:30 and once she is in bed she stays there and sleeps until she needs to pee.


Several people have asked the same or similar questions so I figured it was time to try and answer some of the common ones.  I am far from a doctor so I might get some of the details wrong, but I can get the general information across I hope.


If Karlee is already in remission why does she still need treatment?


This is by far the most popular question.  Remission for leukemia doesn't mean the cancer is gone it just refers to the number of blasts in her bone marrow.  (Blast cells are cells that will not develop into the normal red cells, white cells or platelets that the should.  These are the bad cells that the oncologists can see in the bone marrow aspirates.)  When the number of blasts falls below 5% of the total cells the patient is deemed to be in remission.  This normally happens within the first month of treatment and Karlee was under 1% within the first week.  If treatment was stopped at this point the cancer would quickly return.  The goal within the first six month is to get the blasts to the point where they are not detectable by the oncologist.  The blasts will not be completely gone at this point, but there will be 1 blast in 100,000 or 1 million cells.  Treatment used to stop at this point, but they were finding that there was a very high rate of reoccurance.  This is why there is the 2 or 3 year maintenance phase.  In girls the phase is normally 2 years and in boys it is between 2.5 and 3 years.  The maintenance phase will eradicate all the blasts and the patient should end up in permanent remission.


Why is radiation therapy not used?


It depends on the type of cancer that the patient has.  For ALL radiation therapy used to be used, but the long term side effects were more harmful than the cancer.  Radiation may be required at a later point, but as part of the standard protocol it should not be used.


Why does Karlee need blood transfusions?


Every time that Karlee goes to the hospital the first thing they do after her vitals is access her port and draw blood.  This blood is used for a CBC (complete blood count) which gives the doctor a great deal of insight into what is happening within her body.  The most important count for the blood transfusion is the hemoglobin count.  This is the count of the red blood cells that are used to carry oxygen.  This is also the component of blood that gives the lips and skin their rosy colour.  Depending on the child the oncologist will order a transfusion at different levels.  For a teenage girl they would give her blood when her counts fell below 110 or 100.  For a 6 or 7 year old it would be when the counts fell below about 80.  For Karlee she generally has good colour and a high energy level in the low 70s.  When she falls into the high to mid 60s they give her blood.


Why does Karlee need washed blood?


Karlee is IgA deficient.  IgA deficiency is the most common of the primary immunodeficiencies.  The concern with giving her blood is that she may have antibodies in her blood that will fight the IgA.  Between the hematology department and our oncologist they decided that the blood should be washed to ensure there is no reaction or rejection.  The hematology department felt the blood should be washed between 4 and 6 times while the oncologist felt that washing the blood that many times would remove most of the benefit of the transfusion.  The oncologist won this argument and the end result was that the blood was only to be washed once and they would monitor her during the first transfusion.
IgA is one of the last antibodies to develop so the doctors feel that the development of IgA might have been interrupted by the leukemia in Karlee.  They want to retest Karlee 6 months after maintenance has been completed to see if she is the 1 in 500 who are IgA deficient.


If you have any other questions let us know and we can ask the doctors or the nurses for more information and let everyone know the answers.

Tuesday, September 7, 2010

Last Day of Induction

Monday morning we were back at the hospital for about 11:15am.  Ryley stayed with Grandma in case it was a longer trip to get the port working.  Once we got to the hospital we were again given the same room as Saturday and Sunday.  The nurse came in and drew out the TPA and it was immediately followed by a nice flow of beautiful red blood.  We all gave a quick cheer and Karlee remarked, "You just needed to use an empty one."  She was referring to the nurses always using a syringe with some saline in it and then trying to pull back some blood.  It is somewhere between cute and a little scary when a 3 year old starts to tell the nurses how it should work.


We quickly got out of there before they decided to do something else to keep us there.  It was the quickest visit yet - we were under 30 minutes from walking in to walking out.  We headed down to Swiss Chalet to join Grandma and Ryley for lunch.


The afternoon was wonderful watching the best team in the CFL destroy the team from just up the highway.


Tuesday was Karlee's final day of the induction phase.  Mom took Karlee up to the hospital as Dad  had to work and get Ryley to school.  The drive to the hospital was a zoo today; it took over an hour to do the 40 minute drive.  Hopefully this isn't an indication of what will be coming now that school is back in and everyone is back at work.


Karlee was a very patient little girl while waiting for her time in the procedure room.  The entire clinic was very busy today and the chemotherapy was late arriving for everyone who needed it today.  Karlee was the first of the procedure patients, but she didn't start until about 12:30.  The nurses aren't happy when procedures start this late in the day.  They have a bunch of steroid driven kids who are on a steroid appetite and aren't allowed to eat and are on a steroid driven hormone swing.  Many of the kids get very angry due to the mood swings and the delays.  Karlee was a perfect little angel waiting for her time to come up.


She had a bone marrow aspirate, a lumbar puncture and a chemotherapy injection in the spine today.  She came out of surgery with no issues and promptly woke up and asked for a rice krispy square.  They didn't give her morphine during the procedure and she woke up right away this time.  It might be the morphine that is not allowing her to wake up quickly after surgery.


She was starving, but in a good mood when she woke up.  They were home just after 3 today and Karlee was in a fair bit of pain.  She had some codeine and had some Tylenol later that evening.  It is really nice when you have a couple of drugs that you can team up to help with the pain.  Sharon from church provided a great meal tonight.  Ryley even enjoyed the chicken and rice.


Karlee is now on a drug and treatment holiday.  She gets this week off without any chemotherapy or steroids; all she has to take is the antibiotic septra for 3 days.  We should get some of the results Thursday or Friday of the bone marrow aspirate.  They are now looking to see if she has fallen to less than 0.1% of her marrow cells being affected by the leukemia.  So far she has 2 of the 3 factors in her favour to push her to the low risk of the standard risk.  Hopefully we can get all 3 together and then she will end up with a slightly less aggressive treatment protocol for the next 5 months.

Sunday, September 5, 2010

The Long Weekend...and getting longer

Wednesday morning Karlee was still a little lethargic, but after lunch she seems to perk up a little.  Wednesday afternoon Ryley and Dad drove up around 1pm.  We found Karlee and Mom in the Edward's Sunshine room playing Bingo.  Karlee was having a great time with her dauber, but was still pretty tired and was definitely lacking energy.  Kelly from Child Life took Ryley in the other room and got him set up making a crown while the Bingo was going on.  Karlee ended up winning 2 games and getting a ballerina Barbie and a Littlest Pet Shop set.  Ryley got to play for one of the other kids who was recently diagnosed and was going to get his central line put in.


After Bingo we went back to the room to let Karlee rest and to get another dose of antibiotics.  Once that was done it was supper time and we once again managed to be in the unit on pizza night.  Since Karlee was feeling pretty good we got to eat in the play room and chat with other parents.  Dad always enjoys hearing that we are not alone and there are other parents who have gone through this and other parents who are going through it.  It seems like there is always at least one little tidbit of advice in every conversation.  Shortly after pizza they discharged us and we headed home.


Thursday was a normal day around here.  Ryley had his first day of school and is enjoying grade 2 better than grade 1 already.  His teacher is really nice and he seems to have a good class so far.  Mom did her bus run and took Karlee without incident.  Karlee was a little tired after doing the bus run and spent the rest of the day laying on the couch relaxing.  Thursday night Dad had a Beaver leader meeting while the rest of the family stayed home and went to bed.


Friday around lunch time we noticed that Karlee was even more lethargic then she had been and she was starting to get warm.  Dad and Ryley monitored her temperature while Mom did her bus run.  When Mom got back we decided it was probably time to call the clinic and talk to a primary care nurse.  JoJo was on holidays so we spoke to one of the other nurses and after they conferred with Dr. Singh they decided that we should probably come up and see what was going on.  So once again we loaded the car up with everything we would need to have Mom and Karlee stay the night and started the long drive, in rush hour, to the Children's Hospital.


When we got there they directed us to the unit as they were getting ready to close down the clinic for the day (and the weekend).  Of course by the time we got there her fever had again gone down.  They did a relatively quick CBC using her port and before long they had decided that we could go home since Karlee was on oral antibiotics and her counts were good.  Karlee really wanted to stop at McDonald's on the way home.  She had been telling all the nurses that she wasn't going home when they discharged us; she was going to McDonald's.  We stopped at the Glenmore Landing McDonald's so we could sit outside and try and minimize Karlee's exposure to other people and specifically other people's germs.


Saturday we did a bunch of cleaning and work around the house and yard.  Karlee had a little bit of a fever in the morning, but it come down and we thought we were out of the woods.  Again in the afternoon her fever started to go up again and she started to develop a little diarrhea.  This time we called the hospital and had Dr. Singh paged.  He called us right back and talked about everything that had been happening with Karlee all day.  He decided we should come up and get a dose of IV antibiotics and then we could go home.  We left home just after 6 and dropped Ryley off at Grandma's for a little entertaining.


We got to the hospital right around 7pm; right at shift change.  We saw the doctor very quickly and she reiterated Dr. Singh's plan after examining her.  The nurse came in around 8 to access her port and draw some blood for a CBC and a culture.  They accessed her port fine, but it would not return any blood.  At this point we were a little concerned as Karlee's port had always functioned normally and had never caused any issues.  They assured us that this was not unusual and re-accessing it normally resolved the issue.  They had another nurse come in and access her, but we still had the same problem.  They had one more nurse try and then a couple nurses tried adjusting it to see if they could get it working.  They did get a tiny amount of blood back so they knew they had the correct spot.  The port would let them put saline and meds in, but wouldn't allow anything out.  Finally they decided that the port was not going to work tonight.  They called for the lab to come down and take blood from an axillary point (a needle in her arm).  Karlee was not overly excited about this after being poked 3 times in her port, but was once again a trooper and let them take the blood.  Rather quickly we got the results back and her counts were still good.  They gave her the antibiotics and fluids through her port.  Around 11:30pm they let us go home with Karlee's port still accessed.  She had to come back Sunday afternoon for another dose of antibiotics and to see if her port had started working.


Sunday morning Dad and Ryley went to the wave pool for a little swim.  Ryley enjoyed himself as always and got to burn off a little steam.  Carlynn offered to take Ryley Sunday afternoon while we went back to the hospital so he got to have a play date with Christian.


When we got back to the hospital they still couldn't draw any blood from her port.  They did a great job of getting her antibiotics into her in a very short time frame.  We are hoping the IV antibiotics with put a stop to the diarrhea that is still occurring from the oral ones.  They put some TPA into her port to help dissolve a clot if there was one.  This seemed to be the most likely issue so they started down that path.  We were out of the hospital within 2 hours today.  We have to go back tomorrow to see if we can get the port working again.


If the TPA doesn't work they will probably have to take an x-ray and see if they can see where the issue is.  There is also the option of putting some dye in the port and following its path to see if there are any blockages or issues.  Hopefully we will be able to get this resolved tomorrow so she finish her last procedures and chemotherapy injections of the induction phase on Tuesday.


We are planning on heading back to the hospital earlier on Monday so we can miss the majority of the traffic for the Labour Day Classic.  Go Stamps Go!!!