Another Great Scan Result!

This morning, Kaylee and Kyle headed off to school, just like any other school day.  An hour later, Jamie and I were picking Kaylee up from school and driving down to Cleveland Clinic for her MIBG scan.  I packed our bag with Bear Bear, pink blankies, and lots of fun books to read during her scan.  Mr. Mike came and took us back to her scanner, and I started reading Horton Hears a Who.  Next up was the Winnie the Pooh book of nursery rhymes and then a Hello Kitty book.  Before we knew it, her scan was done, and Kaylee did a great job of staying still and keeping calm through the whole thing.

We ate some lunch and then headed upstairs to Kaylee’s appointment with Dr. Levien.  He came in and said that Kaylee’s blood work looked great and that her urine tests came back within normal ranges too!  We were very happy to hear the good news.  He said that he called down to the Nuclear Medicine department, but they did not have the results back from her scan yet.  Jamie and I did not expect to hear anything until tomorrow or Friday, so the fact that her results weren’t ready a couple of hours after her scan, did not surprise us.  Dr. Levien finished Kaylee’s exam, and just as we were about to finish up, Dr. Levien received a page.  He left the room, but asked us to stay until he came back.  And when he came back into the room, he told us that Kaylee’s scan was clean again!  We were all so excited and gave each other hugs and kisses!  Dr. Levien told Kaylee that she “made his day,” and he congratulated Jamie and me.  Jamie shook his hand, and I gave him a big hug and we both thanked him.  Jamie spotted Nurse Holly in the hall, so he shared the good news as well!  She was so excited too and full of hugs for us too!   We were all so thankful and grateful to receive such great news!

Our ride home was very lighthearted and full of relief!  And when I picked Kyle up from after-school care and I told him the excellent news, he gave me a big hug and had a huge smile on his face

So now, we are sharing the wonderful news with you, and it’s always nice to share good news  So thank you for the positive thoughts and prayers for today – they helped make a great day!   We thank you for your continued support – we truly appreciate it!  Good Night

Scan Tomorrow

Happy New Year!  It’s hard to believe that 2012 is already here!  We enjoyed the last days of Kyle and Kaylee’s school break by going to see The Chipmunks movie all together and visiting with lots of family.  We went to Grandma and Papa with the Trailer’s house to visit Aunt Cherie, Tim,  Dakota, and their new Siberian husky puppy.  Kyle and Kaylee were so excited to see Dakota and play with the puppy and were laughing and laughing!   The next day, Kaylee and Kyle spent the day over at Grandma and Papa through the Wood’s house along with Aunt Jamie, Uncle David, Aunt Lynda, Uncle Rich, Declan, and Orion, while Jamie and I went to work.  Aunt Jamie and Uncle David took Kyle and Kaylee to a cake decorating class at Michael’s for part of the afternoon.  Kyle (and now Kaylee) really enjoy watching the show Cake Boss on TLC, so Kyle received this class as a gift from Santa.  They both did an amazing job decorating their cakes and really seemed to enjoy themselves.  We may have some future bakers in our family

On New Year’s Eve, I took Kaylee and Kyle to the zoo to celebrate the Noon Year.  At noon, everyone gathers around the entrance plaza to watch the ball drop and yell “Happy Noon Year!”  We made it just in time to enjoy the festivities and then set off to see lots of  animals, with the seals and grizzly bear cubs being some of our favorites!  It was a fun day and then after resting a little while, we headed over to David and Nathan and Miss Deb’s house to celebrate the new year.  The kids had fun playing together, and at midnight, we went outside to blow some horns and enjoy a few fireworks  I was surprised that both Kaylee and Kyle stayed up that late!

Kyle and Kaylee headed back to school last Tuesday, and are getting back into the swing of things.   We are almost back to a “normal” school schedule at night and in the mornings.  I have been working extra hours each day, to get all the year-end reporting done.  Jamie has been helping with picking Kaylee and Kyle up from after-school care and getting them to their evening activities.   Sunday afternoon, the four of us went to the Cleveland Indians Snow Days at Progressive Field.  We stood in a short line to ride on the inner tube ride, not knowing what to expect.  I laughed the whole way down the hill, but Kaylee did not like it so much!  She said the bumps hurt her belly, so we didn’t do that again!  Next, Kaylee, Kyle, and I got ice skates and headed over to the “Rookie Rink” for a few minutes.  This was both Kaylee’s and Kyle’s first time on ice skates, and Jamie and I were both impressed at how well they skated!  It didn’t take long for them to have the courage to go around the big path!  Before the day was over, Kyle skated around the path times, and Kaylee went around one time – both did an amazing job and are looking forward to more ice skating!

Today, Kaylee, Papa through the Woods, and I headed to Cleveland Clinic for Kaylee’s MIBG injection.  We stopped at S20, the outpatient oncology clinic, for Nurse Maureen and Nurse Jenny to place an IV and draw blood for her monthly check.  First Nurse Kennie took Kaylees vital signs – her blood pressure and pulse rate looked great, and she weighs 19.5 kg!  Way to go Kaylee!  Then Nurse Maureen and Nurse Jenny worked their magic and placed her IV without too much trouble.  Kaylee is such a brave girl, watching the entire time!  Then we went down to the Nuclear Medicine department for Mr. Mike to inject the MIBG isotope and take her IV out.  We have learned to have water ready because Kaylee can taste the isotope while it is being injected into her IV.  After a  few sips of water and a fun band-aid, we were ready to go home.  Kaylee fell asleep in the car on the ride home, so she did not go back to school for the last hour of the day.  Of course, she woke up just as we got home, so Kaylee and I had some lunch and then played with her new Squinkies.

Tomorrow morning, Kaylee, Jamie, and I will go back to Cleveland Clinic for her MIBG scan and appointment with Dr. Levien.  I will fill the backpack with lots of books to read to Kaylee while she is being scanned.  Thankfully, we can be in the room with her during the scan and only have to leave at the end while they do a quick CT scan.  When Jamie asked Kaylee at dinner last night if there were going to be any blue cells on the scan, she said “No,” and we believe her!  She said that she only has pink cells in her body, so that’s what we are expecting on the scan tomorrow.  I am still a little bit anxious for this scan tomorrow, but not nearly as nervous as previous scans.   And after her scan, we will go back to S20 to see Dr. Levien and get the blood results back from today’s blood draw.  We also want to see if the results are back from her urine test before Christmas and are crossing our fingers for normal protein levels too.  We should hopefully have the results from her MIBG scan before the end of the week, and I will definitely post an update with the news!

So we thank you as always for your continued positive thoughts and prayers for Kaylee and our family.   We truly believe that all the prayers have helped Kaylee reach remission and continue to be in remission for the last 10 months!  Thank you!  Thank you! Thank you!   I will post results as soon as I hear something!

Merry Christmas!

We hope you and your families had a wonderful day together!  We have so much to be thankful for, and we are so blessed to have our family healthy and  home for Christmas this year!  Kaylee continues to feel great, and was so excited about Santa coming.  Kyle is also feeling good and was excited about a visit from the big man as well!

Kaylee and Kyle were so nice and let Jamie and me sleep in until 10:00!  I heard Kaylee come up the stairs at 10:00, peek in our room, and then go back downstairs again without saying anything!  When I came downstairs a few minutes later, they had their stocking gifts spread out, but nothing opened!  But as soon as they started opening their stockings, they didn’t want to stop!  Kaylee was just so thrilled and happy to be opening gifts, and was so excited about each one.  Kyle took a little more time than Kaylee and enjoyed his gifts too!  Kyle’s favorite gift was a certificate to a cake decorating class this week!  He really enjoys watching Cake Boss and is looking forward to learning how to decorate cakes  When I asked Kaylee what her favorite gift was, she said “Everything!”  I think she was just so enamored by the whole Christmas season  She really enjoyed going to the tree farm to cut a tree down (they look so much smaller in the field than in our house!), and decorating the tree with lights and each and every ornament!  She was my little baking helper on Christmas Eve and decorated the cookies with every color sprinkle we own!   And that is the true joy of Christmas, watching our healthy boy and girl enjoy each little part of the season!

Grandma and Papa with the Trailer and Uncle Jesse joined us for dinner yesterday, and then Grandma and Papa through the Woods, Aunt Jamie and Uncle David, and Uncle Tom joined us for dessert.  It was a full house full of fun and laughter!  It was nice to have everyone together, sharing in our day.  And I think we will see Aunt Lynda, Uncle Rich, Declan, and Orion and Aunt Cherie, Tim, and Dakota in a few days!  The kids are definitely looking forward to seeing all their cousins soon!

Kaylee’s appointments to Cleveland Clinic are now once a month for a blood draw and physical exam.  Our most recent visit was the week before Christmas, and we breezed in and out of Kaylee’s appointment on our way to an echocardiogram.  I have not officially heard the results of her blood tests or echocardiogram, but I am assuming that we would have heard something if there were any issues.  Kaylee’s blood counts have been great for the past few months, so I am not expecting anything different.  All of her echocardiograms have been regular, so again, we are not expecting any issues.  Kaylee has an MIBG scan scheduled for Jan 11, as part of her three-month evaluation.  She also has a urine test in process, which measures a couple of proteins that are indicators of neuroblastoma.  So hopefully, by mid-January, we will have another set of good results and can move along with life for another three months!

She is adjusting to her hearing aids fairly well.  She has had a couple of ear infections in the right ear and then an episode with pink eye in her right eye a couple of weeks ago.  But during this last visit with Nurse Holly, both of her ears looked clear.  We do not necessarily put her hearing aids in on the weekends and during her time off school, for which Kaylee is grateful.  She does not like when I put them in her ears in the morning, and she usually asks to take them out after dinner each night.  But during her parent-teacher conference, her teacher, Miss Solon, seems to think they are helping.  Miss Solon also said that Kaylee was doing well in school, and is  right where she needs to be for math and reading.  Jamie and I both can tell that she likes going to school and being with the other kids and learning new things.  She is always singing songs and sharing her newfound knowledge with us!  It is amazing to us how easily she adjusted to school and the daily routine, after being without any consistent schedule or structure these last two years.

And Kyle’s knee is continuing to heal.  He did a great job at physical therapy each week, and then every other week.  His last visit to Dr. Saluan in November did not show too much change from the visit in September.  So Kyle was upset that his is still restricted from running and jumping, which we can definitely understand.  His next appointment with Dr. Saluan in January as well, so we hope to see some improvement.  If Dr. Saluan is not able to see any clear changes on the x-rays, he will schedule another MRI.  It’s a wait and see game right now, but we are all crossing our fingers that he will get the ok to start being more active again.  We have stopped physical therapy at this point because there is not too much more than can do for his knee.  Once he is given the ok to start running and jumping, we may start the physical therapy once again so they can monitor his knee, but for now we are done.

Kyle’s parent-teacher conferences went very well too.  His teacher, Mrs. Vrcan, said that Kyle is doing great and has set a great example for the other kids by reading during his free time in between classes.  Other kids have seen him doing it, and receiving a “coupon” from the teacher, so they started reading as well!  Way to go Kyle!    It was nice for Jamie and me to have such great conferences and hear positive things about both Kaylee and Kyle

So I guess our life is as back to “normal” as we will get.  Both Kaylee and Kyle are in school, Jamie is working full-time, and I am back to work everyday.  Our weekly/monthly schedule is pretty busy with Cub Scouts, Daisy Scouts, and PSR (parish school of religion.)  We add a few doctors appointments and some extra fun activities and the month seems to pass us by!  And that is a wonderful thing to have our life filled with “fun” things, rather than hospital visits and doctors appointments!

We truly thank each and every one of you for your continued thoughts and prayers.  Kaylee is 9 months into remission, and we want to keep counting!  We are so thankful and grateful for the continued support and friendship.  We wish you a very Merry Christmas and Happy and Healthy New Year!

Happy Halloween!

Happy Halloween to you! We hope you had a fun evening like our family did! Kaylee dressed as the Tooth Fairy, and Kyle scared us in his werewolf costume! We headed over to Grandma and Papa through the Woods’ house for Trick or Treating this evening and met up with Uncle Tom too. Both Kaylee and Kyle were very excited to go, which is a big change from last year. Kaylee was still not feeling well last year from her antibody therapy treatments, so she stayed back and passed out candy. I think she walked to 7 houses last year. This year was a different story! Her little legs walked and walked and walked! She was so excited to see some of her friends from school walking around too!

We have had a busy month…I apologize for the gap in posts…so here come the highlights!

During the first week of October, Kaylee received her hearing aids…purple and gold sparkles for the inner ear parts, zebra stripes for the left external ear piece, and purple for the right external ear piece! You can tell that Kaylee selected those colors A few days after receiving the hearing aids, Kaylee was having pain in her right ear. I took her to the pediatrician, who said that the ear looked “cloudy” but not infected. She gave us a 10 day oral antibiotic to try to clear the ear up and help prevent it from getting worse. After the 10 days, she still had some discomfort and was fighting a virus, fevers, and cough, so I took her to see Nurse Holly to check her lungs and ears again. After a chest x-ray to rule out any signs of pneumonia, Nurse Holly checked Kaylee’s ears and said that she still saw fluid in the right ear. So I gave Kaylee some Sudafed to try to dry up her congestion and hopefully help her ear.

Kyle is still going to physical therapy every other week. His knee seems to be doing well, with minimal pain every so often. He did have a little pain tonight as we were trick or treating, but the prospect of candy at each house helped that issue! We will take an x-ray of his knee and see the surgeon in a couple of weeks, so hopefully his knee will be healing enough for some running and jumping…he is chomping at the bit for that!

We had a busy weekend last weekend, with the school Pumpkin Patch carnival on Friday night. Kaylee and Kyle had a great time playing games and hanging out with their friends. Kaylee and Kyle both helped me briefly with the spinning wheel game booth that I ran for an hour, and then Kyle pitched in and helped at the bowling game booth next to me. Thank you Kyle!

Saturday afternoon, Kaylee, Kyle, and I went bowling with the Kids Kicking Cancer Crusade support group, while Jamie attended a Nikon photography conference all weekend. Little did we know that we would be bowling with Joe Jurevicius from the Cleveland Browns! Kaylee had a great time bowling with him, as they picked out which colored ball they were going to roll She looked so tiny standing next to him! She kept asking for Joe to help her bowl…I was not allowed to help her, only Joe!

Saturday evening, Kaylee, Grandma and Papa through the Woods, and I went to Penitentiary Glen for the Halloween event and train rides. This event is one of our family favorites, complete with over 100 carved pumpkins scattered throughout the woods during the train ride. And after the train rides, we ate donut holes and hot chocolate, one of Kaylee’s favorite snacks!

Sunday afternoon, Kaylee, Kyle, and I then went to David and Nathan’s house for a fall party, filled with lots of fun activities! We hiked around their farm land, roasted marshmallows on the fire, took a haunted hay ride in the dark…Both Kaylee and Kyle had a great time playing with their friends and enjoying the wonderful fall weather!

Last Thursday, Kaylee and I went to Cleveland Clinic for a blood draw and exam with Nurse Holly. Nurse Jenny did a great job drawing her blood, and she was done before Kaylee even realized! Then we had a surprise guest help with Kaylee’s exam, Nurse Becky from M50, the inpatient oncology wing! Nurse Becky is doing her clinicals now and will be working full-time in S20 in the spring! And just like any other visit, we played a few hands of Uno and Eye Spy before beginning the exam. We were excited to see that Kaylee’s weight was 18.1 kg, almost 40 pounds! That is the most she has ever weighed Her blood counts looked great and everything checked out just fine! Nurse Holly said that she did not see any fluid in her ears, and Kaylee has not been complaining of any ear pain either, so that is a good sign too! Now, we just need to work on all the wax that she forms…ear drops each night! We will go to see the audiologist next week for a 30 day follow-up for her hearing aids.

So, you can see that we had a very busy October! November may prove to be just as busy, but hopefully with lots of good news for Kyle’s knee! I have to say that it felt strange when Nurse Holly said that Kaylee’s next appointment could be in 4 weeks! The Cleveland Clinic oncology team has become a part of our family and daily/weekly life that it seems strange to only go once a month! But I have to say that it is nice to talk with them about all the fun things that Kaylee is doing in between her appointments, rather than all the health issues

So, we thank you for all the continued thoughts and prayers. It still amazes me that where ever I go, someone is always asking me how Kaylee is doing. I am so excited to be able to share her good news that she is 7 months into remission. And they always tell me that they still pray for her. And I truly believe that all the prayers and support have helped her get to remission and will keep her there. So thank you, thank you, thank you! We hope that you had a fun holiday with your family! Happy Halloween

 

 

 

More Great News!

I received a call from Dr. Levien yesterday afternoon with more good news.  Kaylee’s bone marrow biopsies are free of tumor cells too!  As I was talking with Dr. Levien, Jamie called me…he saw a Cleveland Clinic phone number come across his phone, so he wondered who called.  He was not anxious for the news   I talked with Dr. Levien about what the next steps should be and where we go from here.  Dr. Levien is going to consult with Dr. Yanik in Michigan whether we should completely stop the Accutane or continue for a couple of more months.  And we will do scans and biopsies every 3 months for the next year, just to keep an eye on things.  Dr. Levien also said that Kaylee could stop taking Bactrim, which is the antibiotic that she takes each weekend, to protect her lungs.  She has not had chemotherapy for more than one year and has started receiving her immunizations again, so he was comfortable stopping it.  Now, Kaylee only takes one “teeny tiny” pill each night, which is Synthroid for her thyroid.  We may be able to cut that one out as well, after we check her blood levels a few more times to make sure her thyroid levels are stable.

Tomorrow is Jamie’s and my 12th wedding anniversary.  It’s hard to believe that 2 years ago, Kaylee was starting her very first chemotherapy treatment.  We had no idea what the future would bring, and now 2 years later, she is 6 months into remission and feeling great.  For our anniversary, I made Jamie’s favorite dinner, lasagna and garlic bread,  so Kaylee, Kyle and I went to the store to buy all the ingredients.  Of course we had to stop at the bakery to get Kaylee and Kyle their free cookies.  I paused for a moment to watch Kaylee skip down the isles, happy as can be with her cookie   How far she has come in 2 years!

We truly believe that we could not be where we are today without all the support from our family and friends.  Your continuous prayers and positive thoughts have helped us get through these last 2 years.  We can’t thank you enough…thank you, thank you, thank you!  We are sending lots of love and hugs and kisses your way!

Wonderful News!

Well…Kaylee’s MIBG scan went well this morning, so well that we already have the results! Nurse Holly called just this afternoon and asked to talk to Kaylee. She told Kaylee that there were no blue cells on her MIBG scan, and Kaylee was so happy Then I talked to Nurse Holly and was just so excited to hear the news as well! The CT scan last week noted a couple of lymph nodes in the hip area that were slightly larger than earlier scans, but Nurse Holly and Dr. Levien were not concerned about those lymph nodes. Jamie and I still had thoughts in the back of our minds whether those lymph nodes were some of the neuroblastoma cells making their way back in. But the MIBG scan proved our theory wrong…here are the magic words from the MIBG report: “NEGATIVE MIBG STUDY.” That means the MIBG isotope that Kaylee had injected yesterday did not “stick” to any neuroblastoma cells, meaning there were no neuroblastoma cells to stick to

We are so thrilled to hear this wonderful news! We are still awaiting the results from Kaylee’s bone marrow biopsies yesterday and are anticipating good results as well. Thank you for all of your thoughts and prayers…we know that they are working! We can all breathe a sigh of relief now Hugs and kisses for a good night for all of you too!

 

Kaylee Lost her 1st Tooth!

Kaylee had VERY big news yesterday when I came home from work…she lost her first tooth!  She came running across the gym to tell Jamie when he picked Kaylee and Kyle up from school too!  But, she didn’t have the tooth to put under her pillow because she thinks she swallowed it   This news prompted LOTS of phone calls…to Grandma and Papa through the Woods, Grandma and Papa with the Trailer, Uncle Tom, Aunt Lynda, Aunt Jamie, Aunt Cherie…she was so thrilled to share her special news   So last night before bed, she wrote a note to the Tooth Fairy to explain that she did not have her tooth because she swallowed it, and I told her the Tooth Fairy would be just fine with that.

So that was our thrilling news for the last week.  We have not heard the results from her CT scan and Echocardiogram last week, but we are going on the assumption that no news is good news.  We will see Nurse Holly today for Kaylee’s bone marrow biopsy and MIBG injection, so she will let us know the results today.  Kaylee did a great job with the CT scan last week, drinking lots of grape flavored water an hour before the scan.  And the echocardiogram was quick and easy.  Kaylee fell asleep in the car on the way home, since she was up and out of the house early for her scans.

Then Tuesday night was the first PSR (Parish School of Religion) class for both Kaylee and Kyle.  They both liked their teachers and have a few friends in their classes.   Then I picked Kyle up early to go to the high school for a band/orchestra instrument demonstration night.  Before Tuesday night, Kyle wanted to play the saxophone, but after trying out the trumpet and trombone, he chose the trumpet.  One of the band directors was very impressed by Kyle’s ease of blowing into the trumpet mouthpiece!   So trumpet it will be!

Thursday, Kyle had another physical therapy session with Miss Tobi.  His knee is still coming along well, but since he is not able to run and jump yet, we will continue to schedule the therapy appointments every other week.  Kyle will continue to do some exercises at home to maintain the progress he has made so far.

Friday evening, Jamie started feeling some pain and tightness in his chest, so we made a trip to the Hillcrest ER.  Thankfully, the EKG, chest scan, and blood work all came back normal, signifying a healthy heart.  The ER doctor (and the nurse practitioner at the doctor’s office yesterday) feel that it was probably acid reflux.  With the heart history on his side of the family, we don’t take chest pains lightly.  Several of the nurses and doctors said that it was good that he came to get it checked out.  You just never know what symptoms your heart may present.  So 4 hours later, we came home with a sigh of relief

Saturday morning, Kyle and I went to Cub Scout camp with a few other boys from his pack.  It was a busy day, filled with archery, BB shooting, fire building, geocaching with GPS units.  While Kyle and I were at camp, Jamie and Kaylee went to the picnic for the Cleveland Clinic oncology department.  Kaylee had a great time and saw lots of doctors and nurses   She played on the playground and from the pictures I saw, was full of smiles all day long

So in just about an hour or so, Kaylee, Jamie, and I will be heading down to Cleveland Clinic for Kaylee’s bone marrow biopsy and MIBG injection.  To say that Jamie and I are anxious would be an understatement.  We are all optimistic about the outcome, but it’s hard not to be nervous.  Kaylee is convinced that there are no blue cells left, and we believe her!

So thank you for all the thoughts and prayers for Kaylee and our family.  Please keep your fingers crossed that today goes smoothly and brings back some clear results!  We will keep you posted as soon as we hear anything!  Hugs and kisses are coming your way!

Big 1st Grader!

Kaylee is really enjoying 1st grade!  She has finished 3 weeks of school, and likes her teacher and friends in class.  Each night, she reads me a new book that she has worked on that day – it is amazing to hear her reading and sounding out the words!  She truly enjoys going to school, especially recess time with her friends  Kyle is very proud to be on safety patrol this year and helps take some kindergarteners to the bus and takes Kaylee to the after school care program too.  They are both doing so well in school, and it is a big relief to know that Kyle is there with Kaylee if she needs any help.  Thank you Kyle for being such a great big brother at school!  We are proud of both of you

Kaylee had an appointment with Dr. Orosz, Kaylee’s pediatrician, for her second round of immunizations last Thursday.  It felt very different (and kind of strange) to go to the pediatrician’s office for a visit…we are just so used to going to the oncology clinic at Cleveland Clinic.  Just one more step in the right direction!  Dr. Orosz came in and gave Kaylee a well-check physical exam.  She told us that she has been praying for Kaylee and thinks of Kaylee as her “miracle patient.”  She is so excited that Kaylee is feeling so well and is looking so great!  Then the nurse came in to give Kaylee her five immunizations, 2 shots in one thigh, and 3 shots in the other.  Kaylee sat on my lap and did a great job…I don’t think anyone would want 5 shots, and she handled it so well.  She chose two penguin band aids to put on her legs.

Kyle’s physical therapy appointments have slowed down to once every other week, until we get the “thumbs up” from Dr. Saluan to start running and jumping.  I took Kyle to an appointment with Dr. Saluan last Wednesday and crossed our fingers that we would get the ok.  Dr. Saluan sent us down the hall to get a couple of x-rays on Kyle’s knee, the first x-rays since his surgery 2.5 months ago.  When he looked at the x-rays, he said that it looked like the bone was filling in and healing, negating the need for another surgery.  However, since the knee was not completely healed, he told Kyle that he still cannot run or jump, and to come back in 8 weeks.  Kyle was very disappointed, to say the least.  He had his heart set on running and jumping, but does understand that if he starts to early, he may re-injure his knee.  So we will go see Dr. Saluan again in November and see how his knee is healing then.

I am still working on Kaylee’s hearing aids.  To give you the shortened version of the insurance company fun, I was told last Wednesday that her hearing aids would be covered.  Then I received a call the next day that said “Oops, we made a mistake.  They are not covered.”  Kaylee’s audiologist is out of the office until next week, so we will order hearing aids and get them fitted within the next couple of weeks.  That’s the short, sweet version, minus lots of phone calls!

I did meet with Mrs. Trunk, principal, Miss Solon, Kaylee’s teacher, and Mrs. Valtman, school psychologist, during the first week of school to talk about Kaylee’s situation and hearing issues.  We discussed giving Kaylee preferential seating, wherever possible, and to make sure teachers have a visual cue from Kaylee if speaking from across the room.  Most of the teachers that Kaylee will be working with are already aware of Kaylee’s situation, so it is not going to be a big adjustment for anyone.  We decided not to create a 504 plan at this point but will definitely create one before Kaylee would move up to the middle school in 6th grade.   We will all keep an eye on her testing scores throughout the year, and if we notice any issues, we will address them as needed.  It was a good discussion with the school team, and I am confident that they will keep a close eye on Kaylee and let me know if they have any concerns.

So in between all the doctors appointments and meetings, we have done some fun things!  I took Kaylee to Home Depot at the beginning of the month to make our monthly project.  This month was a dry erase board and frame, and Kaylee did a great job hammering all by herself!  She really enjoys these workshops and is so proud of her accomplishments!  Kaylee, Kyle, Jamie, and I then went to the Captains (Indians farm team) that night and had a fun time.  Kaylee, Kyle, and I ran across the outfield between one of the innings (yes, I told Dr. Saluan about that lapse in judgment) and enjoyed a terrific fireworks show after the game!  Those were the best fireworks that we have seen in a long time, besides Disney World of course!  We met David, Nathan, Miss Deb, and Mr. Mark at the game, and thanks to Miss Deb’s research and planning, the kids each had a sign to hold up between innings.  And when they were tossing out free shirts, each of the 4 kids received one by the end of the night!

Yesterday, Kaylee, Kyle, and I marched in the Better in Mentor parade…correction, Kaylee and Kyle rode on the Cub Scout float, and I walked next to it.  Both Kaylee and Kyle had so much fun throwing out candy to the kids and waving to their friends.  We even saw Miss Maureen from Cleveland Clinic!  Kaylee threw her extra candy and smiled for a picture!  The last time that Kaylee rode in the Better in Mentor parade was just a few days before she was diagnosed in September 2009.  So it was a great feeling for her to be in the parade again, laughing and smiling the whole time

Today, Kaylee and I went to the Village Peddler Festival at the Farm Park to meet Miss Annie, Grandma Mitzie and Miss Dawn.  These are girls that I worked with at Progressive just a few years ago, and it has been a yearly tradition to go to this craft fair together.  The first time I went with them, Kyle was still in a stroller!  It was nice to see everyone, and after they left, Kaylee and I stayed for a while.  She rode on a pony, walked to the horse barn to see the horses, and went to the barn yard to see some more animals.   We saw sheep, pigs, goats, chickens, alpacas as we walked around.  When the Farmparks truck pulled up to the barnyard with hay in the back, all the animals started singing.  Kaylee and I sat on a bench and closed our eyes and listened to the music!  Those pigs can really squeal!  I just kept chuckling at all the animal songs

So, Kaylee and Kyle are off to school tomorrow, and Jamie and I are both heading into work.  Now that the kids are back in school, I have gone into the office everyday and increased my weekly hours.  I am still able to get the kids on the bus in the morning and then pick them up from after-school care, about 1.5 hours after school ends.  Kaylee is still adjusting to the new morning routine…she is definitely not a morning person!  The first couple of weeks of school were rough on her, but she is adapting to the new schedule.

Tuesday, I will take Kaylee to the Cleveland Clinic for a CT scans and echocardiogram.  These are tests that Dr. Levien needs to evaluate if Kaylee can stop any further treatment.   The following week (Tues and Wed), she will have an MIBG scan and bone marrow biopsies as well.  With the results of these tests, Dr. Levien will able to form a plan for Kaylee’s future.  We are all crossing our fingers and praying that everything comes back normal, so that she can just focus on being a 6-year-old girl!  These are important tests, so we are all anxious to hear the results!  I’ll post them as soon as I know anything

So thank you, as always, for the continued thoughts and prayers.  I think Kaylee is starting to realize how many people are praying for her and keeping her in their thoughts.  Our whole family is so lucky to have such great support, and we are so grateful.  Thank you for hanging in there with us for the past two years…Sept 24 marks 2 years since she was diagnosed…I am not sure if anyone knew that she would be feeling great and be 6 months into remission at this point.  We could not have gotten here without all of you, so THANK YOU!  We are sending lots of hugs and kisses your way!

School Starts Tomorrow!

Tomorrow (Monday) is Kaylee’s first day of 1st grade and Kyle’s first day of 5th grade!  We are all so excited for the school year to start  Kaylee and Kyle took their bath/shower and went to bed early tonight.  We have been trying to move bedtime up a little bit each week, so that it wouldn’t be such a shock tonight.  Kaylee’s princess book bag is all loaded up with her school supplies, with an extra bag for Kyle to help carry.  They will ride the bus together in the morning, and Kyle will walk her to her class room.  It definitely helps having Kyle go with her…although she told me she already knows where her class room is located!

Kaylee’s Kool-Aid stand last Tuesday was a success!  Thank you to our family and friends who came to see her – she was so excited to see you all!  Even the Red Bull truck driver stopped for some Kool-Aid too!  Kyle got a kick out of that one!

Wednesday afternoon, Kaylee, Kyle, Uncle Tom, Grandma and Papa through the Woods, and I went to see an afternoon Cleveland Indians game.  And although we did not win the game, I think we all had a good time.  Thank you to the Littlest Heroes and the Cleveland Indians for the tickets – they were great seats, and even more important, in the shade.  Kaylee is taking her last schedule 2 week course of Accutane, so she has to stay out of the sun if possible and wear lots of sunscreen if needed.

Thursday morning, I took Kyle to his physical therapy appointment, while Papa through the Woods came to our house to stay with Kaylee.  Kyle’s knee has definitely improved over the last month, so now we are waiting on clearance from Dr. Saluan for high impact activities, such as running and jumping.  So instead of having physical therapy 2 times a week each week, Kyle will go once every other week until mid-September.  He will continue to do his exercises at home and try his hardest not to run…

Thursday afternoon was very exciting for Kaylee, since she went to Ladies and Gentlemen Salon to have her hair styled straight for the day!  Lou did a wonderful job with the flat iron and brought such a big smile to Kaylee’s face!  She was so excited to see her hair straight again, and Jamie, Kyle, and I could not believe how different she looked with her straight hair!  She was just thrilled to go to the mall with her straight hair to buy some new shoes for school!  Thank you Lou for your time and talent and truly making Kaylee’s day!

Friday, Jamie worked from home, while I went into the office to work.  And when I came home, Uncle Jesse was preparing a wonderful steak dinner for us, that we all thoroughly enjoyed.  Thank you Uncle Jesse!

The rest of the weekend was pretty quiet…Kaylee and I went shopping to fill Old Mother Hubbard’s cupboards…they were pretty bare!  And today, Kyle, was installed as an altar server at church.  He will help serve his first mass next weekend – congratulations Kyle!  Then, Kaylee, Kyle, Jamie, and I went to Penitentiary Glen to ride the miniature trains.  Kaylee was so excited to go, and our first ride was on a steam engine  The second ride was on an electric train, with nice cushy seats for Kyle and Jamie.  And then we walked over to see the rescued animals they have on display: hawks, owls, ducks, wild turkey, and turtles.   We even watched one of the naturalists feeding one of the hawks as he was sitting on her arm!  It was neat to see that

So now Kaylee and Kyle are sleeping soundly in bed, hopefully dreaming good thoughts of school tomorrow.  This week will be a challenge for Kaylee, since she is not used to long school days.  I am sure she will get through it with flying colors, with a little bit of extra sleep each night.  Kaylee has an appointment later this week after school for a blood draw to check her counts, and I have a meeting with her teacher, Miss Solon, the principal, Mrs. Trunk, to create a 504 plan for Kaylee.  The 504 plan will make each of the teachers aware of her hearing loss and continuous doctors’ appointments.  It does not give her any special instruction, but helps to make sure that she is not penalized or punished for not hearing the teachers.  We are still waiting on the insurance company with their decision for whether the hearing aids will be covered or not.  I am going to keep on top of the insurance company so that I can order her hearing aids as soon as possible.  Thankfully, the processor piece of the hearing aids will only take about one week to arrive, so it won’t be much of a delay between ordering the hearing aid and receiving them.

So thank you as always for the continued thoughts and prayers.  We are all so excited that Kaylee will be starting her first full year of school tomorrow.  This day seemed so far away for such a long time, and now it is finally here – with a very healthy and happy young little girl!  We truly believe that all of your prayers have helped her get to this day and to her remission.  Thank you!  We are sending lots of hugs and kisses your way and hope that the school year starts off on a good note for all of you too!

Kool-Aid Stand

Kaylee’s mind is working today!  She is setting up a kool-aid stand in our front yard with strawberry Kool-Aid, watermelon and cookies…all for 25 cents!  She would be thrilled if any “customers” would like to stop by