Biopsy Complete & Chemo Round 6 Begins

Another bone marrow biopsy was performed on Kaylee yesterday morning, and it went over without a hitch.  Before I get into that, let me start from the beginning…

We all got up around 8:00 am and were on the road by about 8:45 am – headed to Cleveland Clinic.  We stopped off in the clinic for some blood work and a vist with Dr. Levien.  I parked the car while Carol and Kaylee headed upstairs to S20.  By the time I got there, they had already drew blood, and it was on it’s way to the lab… Kaylee’s tubies were very cooperative.

We me with Dr. Levien and talked about her surgery; Dr. Levien seemed to be very pleased with the results.  He inspected Kaylee’s incision and agreed taht it looked okay – Chemo could start today.  We then headed over to M20 where Kaylee would be put to sleep and a bone marrow biopsy performed.  The biopsy was really quick… before we knew it, Kaylee was back in room #4.  We let Kaylee sleep off the anesthesia (she’s a much happier camper that way), and then headed back to S20 to prep for a ultra-sound (checking Kaylee’s heart).

We headed back over to the M building; M40 to be exact.  The ultra-sound was quick and painless. I think we were in the room for maybe 15-20 minutes… headed back to S20…again. 

I think we were in S20 for maybe 10 minutes, until they told us that Kaylee’s room was ready on G71, so we packed our selves up and headed over to G71 – room 18.  Kaylee drew some pictures, ate some cerial for lunch/dinner, and watched some television.  I headed home to be with Kyle for the evning, and get ready for work tomorrow.  I called Carol when I arrived at home, about 8:00pm – they were just about ready to start her chemo treatment.  It’s going to be a long week for Kaylee…

Carol sent me a message this morning that Kaylee woke up around 7:00 am and threw-up 2 times, then went right back to sleep.  I talked to her a little later in the morning, and she told me that she threw-up 2 more times.  Other than that, she is doing really well (as usual).

Another good day.

We had another good day at home.  Kaylee’s incision is healing nicely, and most (if not all) of the pain she was experiencing has subsided.  We’ve been home for just about a week now, and as with all good things, they all come to an end eventually…  Kaylee is scheduled to have the Bone Marrow biopsy tomorrow morning, and then we’ll checked into her room on floor G71 to start round 6 of chemo.  Kaylee will not be experiencing anything new with this round.   The chemo Kaylee is to take this round is Cyclophosphamide, Doxorubicin & Vincristine. The Doxorubicin will be administered for 72 hours straight, again.  The Cyclophosphamide is nothing new to Kaylee, she had this drug in Cycle 1 and 2.  I believe the Vincristine is adminstered before the Doxorubicin again, but don’t quote me on that.  I’m going off of my post back on December 8th, 2009 (Cycle 4, Day 1: Cyclophosphamide, Doxorubicin & Vincristine).

I was supposed to go back to work tomorrow (Monday), but instead I’ll go back on Tuesday.  Since Kaylee’s surgery had a late start, the Bone Marrow biopsy could not be done, so it was rescheduled for tomorrow instead.  I’ll probably visit Carol and Kaylee on Wednesday and Thursday after work, but on Tuesday, I have another dentist appointment (cleaning) right after work.  Kyle will go to school all this week and maybe we can take him up on Wednesday or Thursday to visit with Kaylee.

Thank you for all the continued thoughts and prayers.  Kaylee continues to prove that she is  a strong and determined girl.  She is an inspiration to all of us

We are sending our love and prayers to you too!

Healing Nicely

Kaylee is continuing to heal from her surgery very well.  She has been very active since we came home and has not had any pain medication for the past few days!  That is absolutely amazing to me, since her surgery was just over one week ago!  Her incision is healing well and the steri-strips (small bandage tape over the incision) are starting to fall off.  About the only time that she says “Ow!” is when Jamie or I pick her up or put her down in a strange position.  She is continually climbing into our laps or cuddling up with us, which is so nice  

Jamie, Kaylee, and I have spent the past few days relaxing at home, while Kyle is at school.  Once Kyle is home, Kaylee and Kyle are inseparable!  She enjoys watching him play his Nintendo DS or playing board games.  Kyle is still the champion of Eye Spy Eagle Eye, but Kaylee was finding a few too!  Each player has a board with very random objects pictured on it, and then you draw a card with a specific item on it.  The first person to find the item on his board rings the bell.  I definitely need help with this game! 

Other than Jamie’s trip to the dentist today to replace a crown, it was a very quiet day for us, which is exactly what we need.  I have been working on laundry and cleaning around the house, knowing that Kaylee and I will be at the hospital all next week for her 6th cycle of chemotherapy.   I took some time to complete a questionnaire regarding my pregnancy and eating habits for a research study that is being completed by the University of North Carolina.  Kaylee, Jamie and I are going to send some DNA samples also to see if they are able to identify any genetic explanations for neuroblastoma.  We will not receive any individual results, but once the study is complete with all of the participants, they will share their overall findings with us.  Jamie and I decided early on that we would consider participating in research studies if they did not cause any pain/harm to Kaylee and would help find the cause or prevention of neuroblastoma.  We would love to help prevent neuroblastoma, or even find a way to help treat it, for this is not a situation we would ever want anyone else to go through.  If we can help, we are going to do it! 

We would like to thank you for your continued thoughts and prayers.  We truly appreciate the love and support we receive and wish to send our love and prayers too!  Hugs and Kisses!

Relaxing Days at Home

Kaylee continues to progress in her recovery each day.  I have noticed great improvements over the last two days with her range of motion and energy level.  Monday was a quiet day at home with lots of playing!  Aunt Jamie (girl) spent most of the day with us, playing with Kaylee and having a great time!  Kaylee really enjoys playing with her Littlest Petshop animals with Aunt Jamie   Jamie (boy) made his famous Chicken Fettuccine Alfredo for dinner, and it was delicious!  Auntie and Cherie and Dakota stopped for a short visit before heading back to Toledo.  Kyle, Kaylee, and Dakota had a great time playing together, building blocks, shooting Nerf guns, and just hanging out.  It was a fun visit! 

Kaylee took her weekly bath Monday evening, but we had to use even less water.  Her incision is not supposed to be immersed in water for 2-3 weeks, so I used less than a couple of inches of water in the tub.  It was a very, very quick bath, of course with the heater at 85 degrees to help warm the air in the bathroom!  I changed her dressing without any issues -  I think Kaylee is finally comfortable with this process now.   The dressing we use can be removed from her skin without any pain, so it is no longer an uncomfortable process for her.  While Kaylee was taking her bath, Aunt Jamie worked with Kyle on his homework and then they played Clue Jr.  And after Kaylee’s bath, we all played another game of Clue Jr.  It was a good evening!

Tuesday was another quiet day at home, with lots of playing and laughing.  Kaylee found a new adventure game on Luckycharms.com that we played together several times.  When Kyle came home from school, we played a couple of games of Disney Magic Kingdom game and Clue Jr.  Aunt Jamie stopped by for a short visit before flying back to Philadelphia, so Kyle and Kaylee showed her how to bowl on the Wii.   It was a quiet evening, filled with dinner, homework, and bedtime.

Kaylee does not have any scheduled appointments for the remainder of the week.  She will go to Cleveland Clinic next Monday for a bone marrow biopsy and then be admitted immediately afterward for cycle 6 of chemotherapy.  This cycle is the same as cycle 4 with the 24 hour chemotherapy over 3 days, which turns into 4 days, due to the slow drip.   Kaylee also developed a couple of sores in her mouth after cycle 4, so we will really keep up with her teeth brushing and mouthwash several times a day!  Those mouth sores were not fun, and caused her to stop eating due to the pain.  That is not what we want again! 

Thank you again for all of the thoughts and prayers.  I am truly amazed at her strength and courage through this entire process, and she is doing such a great job!  We appreciate all of the love and support and send our love and prayers to you too!  Thank you!

We’re Home!

Yesterday (Sunday, since it already past midnight), Kaylee and I came home from the hospital!  Right before I left to go to the benefit dinner, Kaylee did the last thing the doctor’s wanted to see, she had a bowel movement.  That means her digestive track is functioning properly.  Kaylee gets a kick out of the doctors and nurses who always want to know about her bodily functions!  She had a very good day on Saturday, as we went down to the playroom and moved and stretched a lot playing with the toys.  When we came back from the playroom, I suggested that Kaylee sit in the chair, instead of climbing back in bed, and that is where she spent the rest of the night.  I am still amazed at how quickly she is recovering and how well she is handling the surgery.  Her incision is probably 6 inches long and runs from the just left of her breast bone, under her right ribs, around her ride side to her back.  With all of her activity, no new blood has appeared on the dressing, which is a relief!

Grandma and Papa through the Woods came to stay with Kaylee, while “Jamie girl,” as my sister is known as, went with me to the benefit dinner.  Jamie and I truly had a wonderful time at the dinner, and I don’t want to repeat myself again from my last post, but thank you so much for all of your support!  It was an unbelievable night that we will never forget!

So after I came back, Kaylee and I played our few rounds of Go Fish until 1 a.m. and fell asleep quickly.  The surgical residents came in at 7:30 this morning to check on Kaylee, and I told them what a great day that she had on Saturday.  They reported to Dr. Magnuson, who said that we could go home today!  Nurse Janelle came in an unhooked Kaylee’s fluids and went over the discharge papers with me.  The surgical resident came in and removed the bandage from Kaylee’s incision and explained that the steri-strips along the incision would fall off on their own in the next few weeks.  I wasn’t sure how Kaylee would react to seeing the incision, but she took one look at it and kept playing her Nintendo DS!  She does not seemed phased by it at all!

Jamie and Kyle came to get us and we were home by early afternoon.  Kaylee wanted to cuddle on the couch for a little bit, and then we had some visitors:  my older sister, Lynda, brother-in-law, Rich, and nephews, Orion and Declan.   The kids played upstairs for a little while and had a good time together.  Kaylee was having a tea party and played Hungry Hungry Hippos, while the boys ran around with Nerf guns.   It was a short visit, but those kids packed in lots of fun

We had a pretty quiet evening, and I took a little nap!  After the kids were in bed, Jamie-girl and I went to the store for some basic essentials, milk and orange juice!  I stopped to visit with Grandma and Papa through the Woods for a little while and came home to put some of the groceries away.  My pillow is definitely calling my name, but maybe after a nice relaxing bath first!

Thank you for all of your continued thoughts and prayers for Kaylee and our family!   We are so blessed to have so many people praying for Kaylee, and I truly believe it is working!  Her surgery was so successful and without any complications, and her recovery has gone so smoothly!  She continues, day in and day out, to show what a strong girl she is and how determined she is to do things for herself!  Thank you for the love and support – we truly appreciate it!  Hugs and Kisses and Good Night Dreams!

A Great Big Thank You!

Walking into last night’s Benefit Dinner was truly overwhelming and unbelievable to me.  I truly could not have imagined a more beautiful evening filled with so many family and friends!  To look down the room from one end to the other was an absoute amazing sight to me!  Thank you so much for everyone who joined us, and we send our love and prayers to those would could not be with us.   Jamie and I tried to circulate to many of the tables, but we only made it halfway through the room.  So for so many of you that I did not get to personally talk to, thank you for coming and supporting our family and Kaylee’s road to recovery.  We truly appreciate it! 

I hope everyone had a great time and enjoyed the evening.  I cannot believe that we had 60 baskets to raffle off (we were hoping to have 10 or so)!  Many thanks to everyone who donated items – it is very much appreciated and helped to make the night fun for everyone!  Kyle was absolutely ecstatic that he won the Nintendo DS for Kaylee and won the Cleveland Indians basket – I promise it was not fixed (but I think Grandma and Papa were stuffing the bags with tickets)! 

And we can’t say thank you enought to Tina Lane, Jesse Guimbellot, Suzanne Wingren, Tammy Jaite, Becky Luzier, Brian Poe, Peggy Breedlove, Liz Johnson, Lisa Micciche and everyone else who helped plan the evening (I apologize if I am missing a few names).  It was very obvious how much time and energy you put into planning the evening and selling tickets.  It was definitely a successful evening and it went beautifully!  Thank you from the bottom of our hearts!

I made it back to the hospital just after midnight, and Kaylee was still awake!  She was waiting for me to come back   I gave her the many hugs and kisses from all of you and told her that everyone was praying for her and hoping that she gets better soon!  She gave me a great big smile   She had a wonderful evening with Grandma and Papa through the Woods, and we both fell asleep around 1 a.m.!  It was a late night for us but a very good night  

Once again, thank you to everyone for their love and support.  Jamie and I cannot thank all of you enough – thank you!  We are sending our love and prayers to you too!  Lots of hugs and kisses coming your way!

Up and Walking

Yesterday (Friday) was a great day for Kaylee.  It started with a great night’s sleep until 1 p.m.!  She must have been catching up on the lack of sleep from the two nights in the PICU!  She woke up in a great mood, and played Dora Candy Land with Jamie and me.  We also played a few rounds of Princess Old Maid when Sarah from Child Life stopped in.  Kaylee continued to pass lots of gas, so the doctors said she was ready to eat!  I actually think they wanted to move her to all liquids, but I pushed for food – she was really hungry and wanted to eat!   It was very hard to tell her that she couldn’t eat until we received the ok from the doctors.  She ate cinnamon Scooby snacks shaped like dog bones, macaroni and cheese, granola cereal, fruit snacks…she ate a little bit of everything and she was very happy!

Not too long after she started to eat, Kyle and Grandma and Papa through the Woods came to visit.  Kaylee and Kyle were very happy to see each other  Grandma and Papa took turns telling Kaylee the story of Goldilocks and the Three Bears, while Kyle, Jamie, and I headed down to the cafeteria for some food and time together.  Kyle, Grandma, Jamie and I played Uno, while Papa and Kaylee played Go Fish.  It was a fun time with everyone!

The surgery team stopped back up in the evening to see how Kaylee was doing and I asked again about getting up to walk, and they strongly encouraged it.  Kaylee wanted to get dressed and go for a walk in the hall!  She started walking while holding Jamie’s hand, but by the end of her walk, she was not holding on to anyone!  I was amazed at how fast she was moving – I would have been going at a snail’s pace!  She met another patient named Victoria in the hallway and they waved to each other as they passed in the halls  I am truly inspired by Kaylee’s strength and determination!

Kyle and I took another walk together and found a cinnamon roll in the Au Bon Pain downstairs and hot fudge sundae at McDonald’s – it was a sweet walk  Jamie decided to spend one more night with us here at the hospital, so Kyle headed home with Grandma and Papa to stay at their house.   Kaylee and I were both in bed by 9:00 and watched a little TV.  Jamie is our night owl who stayed up with the night shift nurses!

The surgical team came in this morning to check on Kaylee again and said that we would stop the morphine drip later this morning.  She is receiving another pain medication through her IV and we are able to give her individual doses of morphine as needed.  Nurse Becky came in about 9:30 and removed the morphine pump, so that means no more pulse/oxygen monitor on her toe either  Dr. Magnuson also stopped in and said that Kaylee looks good.  Even with all of her moving around yesterday, her incision dressings are looking good, with no new blood or issues.

Kaylee and Jamie are both still sleeping, but Kaylee is starting to stir a little.  I hope to get her up and moving some more today and see how she does without the morphine.  And as long as she is feeling okay with it, Grandma and Papa through the Woods and Aunt Jamie are going to stay with Kaylee this evening so that I can go to the Benefit Dinner tonight for awhile.  Kyle and Jamie will be there for sure, and I am hoping to get there too!  It all depends on how she is feeling today

Thank you for all the continued thoughts and prayers.  Kaylee continues to prove that she is  a strong and determined girl.  She is an inspiration to all of us

We are sending our love and prayers to you too!  Enjoy your weekend

Making Good Progress

Yesterday, Kaylee continued to make more progress in her recovery.  Aside from the fact that she was awake from 3:30 a.m., she was in a good mood.  We played a game of Guess Who at 4 a.m., and then I went back to bed.  She tells me that she stayed awake to watch cartoons all morning until I woke up again around 7:00  We played several more games of Guess Who, Disney Princess Crazy 8’s, and Miss Sarah from Child Life joined us for a couple of games of Disney Princess Old Maid.  Miss Kate came to visit Kaylee in the PICU to do some art projects, and Kaylee was excited about that!  She painted some pictures and colored a picture with Mr. Sketch scented markers, and made a beautiful Valentine for Kyle!   She was definitely more active than the day before, which is such a good sign!  She even rolled over on her side to let me scratch her back – that is definitely a good sign!

A room also opened up on the oncology floor for Kaylee, so we moved out of the PICU and over to her “regular” floor for  some more rest.   Nurse Kim took Kaylee’s other IV out of her hand, so now her hands are free!  Being on a morphine drip requires a pulse/oxygen monitor, so we moved that to her toe too.   Jamie joined us shortly after we arrived in our new room, as well as Grandma with the Trailer and Auntie Cherie.  Jamie and I went down to grab a bite to eat, while Kaylee, Grandma, and Auntie Cherie played Candy Land and Old Maid.  The girls had a great time, laughing and enjoying their time together  Kaylee fell asleep before Jamie and I came back to the room, and was snoring loudly!  She was definiiely tired and needed some sleep!   She woke up a few times during the evening with some pain near her incision, which was not unexpected, since we reduced her consistent dosage of morphine by 50%.  We gave her two additional doses of morphine, three hours apart, and that seemed to have done the trick!  She fell asleep for the evening with lots more snoring – I don’t think I have ever heard her snore so much before  The nurses reported a quiet night of sleep without any extra morphine doses.  I fell asleep and would probably have slept through a thunder storm!   I am not sure what time Jamie fell asleep last night, but they are sleeping peacefully now!

The surgical team stopped this morning to check on Kaylee.  They said that Kaylee can sit up and walk and encouraged it, so that will probably be in the works today.  Right now, she is turned on her side with her legs curled up, which is pretty significant.  As I was typing that last sentence, Kaylee just passed some gas!  Yay!  I know that sounds funny, but we have been waiting for her to pass gas to signify that her digestive system is working properly and then she can eat solids again!  She has not really had any solid food since Monday evening, and she was asking for food yesterday afternoon.  I will pass along this good news to the nurse and hopefully get some solid food for her this morning.

Today should hopefully be another day in the right direction for Kaylee’s recovery.  They have temporarily lifted the restriction on visitation for minors, so Kyle is planning on coming to visit Kaylee after school today.  He was in a good mood last evening after I told him that he can come down to visit!  Kaylee smiled when I told her that Kyle was coming too!  I am looking forward to a good day with Kaylee and a good visit with Kyle

I always end my posts with a thank you to everyone, and today is no different.  Thank you so much for the continued thoughts and prayers and for all of your generosity.  We are so grateful to have so many people praying for Kaylee and her recovery.  We are sending our love and prayers to you too!  Hugs and Kisses!

Recovering…

We settled into a PICU (pediatric intensive care unit) room last night, and we were all exhausted.  Kaylee woke up from the anesthesia in a quiet mood, which was to be expected.  They did not place an epidural line in her spine as anticipated, probably due to the tumor lesions on her spine.  Therefore, Kaylee is on a constant morphine drip, with the ability to receive additional morphine every couple of hours.  She fell asleep fairly quickly last night and slept for about 6 hours.  She woke up about 4:30 a.m. and has been pretty much awake since then.  She would drift off to sleep and within minutes would jerk herself awake and cause pain by her incision.  This pattern continued for several hours this morning and into the afternoon, but it finally subsided.  We are not sure if the jerking awake was due to the anesthetic wearing off or from the morphine.  Either way, she is not doing this on a consistent basis anymore.

Our morning was filled with many visits from doctors and nurses, all checking on Kaylee’s progress and pain levels.  Dr. Magnuson stopped by to check on Kaylee, and he gave me a few more details about the tumor surgery yesterday.  The tumor he removed was about the size of a grapefruit!  It was very solid, so he was able to remove it in one piece, which signifies that the tumor was probably not active.  He explained that active tumors are very soft and easily tear, but Kaylee’s was very solid and was easily removed.  It had not wrapped around any major vessels or arteries either, which reduced the surgery time.   He is very confident that the surgery was successful and that she was recovering well  I know that all of our prayers to guide all the doctors and nurses caring for Kaylee have helped!

Our afternoon was very quiet.  We played a few games of Guess Who and watched lots of cartoons.  Jamie came to visit this afternoon and brought some Spongebob videos to watch, so Kaylee is very content.  The nurse removed one of her IVs in anticipation of being moved to a regular room on the pediatric oncology floor.  Unfortunately, the oncology floor and main children’s floor are full, so we will spend another day here in the PICU.  Since Jamie was here to stay with Kaylee, I was able to sneak away for a much needed shower and meal.   Since Kaylee is still on a clear liquids diet, I do not want to eat in front of her.  We are just waiting for her to “toot” (pass gas) to signify that her systems are functioning properly and then she will be able to eat.  She does not want to drink any of the juices or broth that we offered or any popsicle or jello, so it may be a little while until she can eat.

While I was gone for my shower, Dr. Levien and Nurse Holly stopped by to see how Kaylee was doing.  They said that they were very pleased with the outcome of Kaylee’s surgery and say that she looks good  And when I came back from my shower, Grandma and Papa with the Trailer were here visiting Kaylee.  They stayed with Kaylee while Jamie and I went back downstairs for some food/dessert.

Right now, Kaylee’s eyes are getting heavy, so I am assuming that she will be asleep soon.  I hope that she sleeps through the night tonight and feels even better in the morning.   We are so proud of her and how well she is handling the pain and discomfort.  Every time I need to change her Pull-Up, she lifts her hips off the bed, which I know is very uncomfortable.  And when we needed her to roll a few times today to change her sheets, she did it all by herself!  These are flashbacks to our initial hospital stay in September when she would not let us help her at all – she did it all by herself!  She is such a strong girl and continues to prove it each day

Thank you everyone for your continued thoughts and prayers.  I truly believe they were answered with her successful surgery!  We are sending our love and prayers to you too!  Hugs and kisses and good night dreams!

The Best News Ever!

5:40pm – We just received another message that the Tumor has been removed and they are in the middle of closing her up.  The next step is a bone marrow biopsy, then we will be able to see her.  She’ll probably be in and out of consciousness  as the Anesthesia wears off and the pain medication kicks in.  Kaylee will stay in the Pediatrics Intensive Care Unit (PICU) over night for observations, but should have her own room tomorrow.