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Tuesday, June 23, 2009

Clinic Day

clinic was pretty much the same as last time. Emily was 17.1 kilograms (yes, down from last time again), she has grown about 2 inches this year which is really great! Her WBC is 2200 and her ANC is 1200.

She is going off her daily IV med, Magnesium. If she handles it well we will be taking her central line out! This will be a very exciting day!

The doctor told me that even if her counts continue to be on the lower end as they are now, he will let her go to school in the Fall. It is all very confusing to me since he still says she is immune-compromised at the moment. Maybe the Cyclosporin has to be completely out of her system. All I know is that it seems like we can see the "light at the end of the tunnel!"

Emily is already having to adjust to a more "normal" way of life and she isn't so sure about it. She misses all the attention she got when she was so sick. This is all totally normal, and totally expected but we are hoping we can help her see how great it is to live life as a HEALTHY little girl. This has been her life for 7 years so I am sure it is going to take some time. Won't this be a great problem to have?

Sunday, June 21, 2009

Happy Fathers Day


Dad, I LOVE YOU! You are always there for us! Here are ten of my favorite things about you:
1) It is so much fun to listen to you talk about your day at dinner. Your conversations are always so upplifting. I have never heard anything degrating come out of your mouth.
2) I love our family scripture study. Your input brings light to what we are studying about. You are a natural teacher that teaches well!
3) Your testimony is so strong and whenever I hear it, mine grows stronger too. I know that your testimony is built on Christ. I've always known you know the church is true.
4) You love to play with us. Whether we are hiking, running, swimming, laughing, biking, walking, driving, or talking, your light makes the moment even better!
5) Dad, you are one of the best examples I've ever had. You are always striving to do better and to be better. I love your determination to serve. You are always looking out for others and you aren't afraid to act upon inspiration. I will never forget when you stopped to help a lady put stepping stones in her car even though she said she was "fine." You didn't let that stop you!
6) I love your laugh! It brings joy whenever it floats into the room.
7) You are such a hard worker. You work super hard at work only to come home and help around the house. You grill, do the yard work, and help out with anything else. You are always willing to help.
8) You give the best massages and tickles! (If you haven't ever had one before, this is defiantly something to experience before you die!) Before bed practically every night, your fingers are ready to get a workout. You take time out of your free time to spend time with us. I love that time I spend with you!
9) Daddy-Daughter-Time has got to be my very favorite. I love going to the temple with you. It is so much fun to feel of the spirit while being with you. I have really enjoyed running with you these past few months. I would not want to go out on long runs if I wasn't with you. You keep me going and it's fun to talk to you.
10) I have never seen someone quite as patient as you. You are always willing to wait in order to get the most out of the situation.
I truly believe that you are the BEST dad ever! (I'm sorry, to all of you that think your dad is better, but my dad wins over all!) I love you!
-Jac


Dad, you are nice, kind, caring, loving, not proud. You are one of a kind.

I love your "tickles", talking with you, playing sports, camping and hiking.

I love you Dad! Thomas



Dad, I am grateful for you.

I like to do a lot of things with you especially cuddle and talk.

I love you! Emily

Matthew, thank you for being such a wonderful father to our children. You are always there for them, willing to listen, play, help and teach. I am so grateful to be by your side as we do our best to raise our children.

As you can see, you are adored, you are looked up to, you are loved, more than you will ever realize!

HAPPY FATHERS DAY!

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Swine Flu...Day 9

Yes, Thomas has now been in his bedroom for 9 days! As you can see, he is feeling much better, and he is VERY READY TO COME OUT! He still has a stuffy nose and some congestion so he has to stay put till ALL of his symptoms are gone; just to be safe.

Thomas' top 10 "great" things about being Quarantined to your room:

  1. Room Service
  2. T.V.
  3. Leo (who would not leave his side till he knew Thomas would be OK)
  4. Luxury of my bed
  5. nearby garbage can...lots of tissues and other lovely things :)
  6. Get well cards, and visits through my window
  7. My very own bathroom
  8. Knowledge of remote controls
  9. Playing games with my Mom
  10. Playing Nintendo with Jacqueline

Thomas' top 5 reasons he's excited to get OUT of his room:

  1. The Sun
  2. FRIENDS
  3. Feeling Good
  4. Being with my FAMILY
  5. JOBS (added by Mom of course!)

When he found out he couldn't come out of his room on Friday, he was more depressed than I have ever seen him! My heart just broke for him. I put on a mask and we played connect four. I must say I am REALLY good! I saw life come back into his face and the smile that I have missed so much.

It has been so lonely having no one to talk with and be around. He followed me up the stairs Friday night and told me it had been a whole week since I had given him a hug! (Yes, I know I am a wonderful mother) I felt so bad, As I hugged him tight I realized how important touch is.

I have been so impressed with how well he is handling this. He is even trying his best to keep the Sabbath day holy. I went down to his room and he was listening to Sunday music while reading Tennis Shoes among the Nephites.

No one told him he needed to do this, he is doing it because that's who he is. I love him dearly and am grateful for his wonderful example!

Wednesday, June 17, 2009

2 more teeth gone!


As Emily and I were cuddling on the couch, she asked me to try and pull her teeth out. She asks me to do this almost daily and her teeth just haven't been quite ready.

Today they were! She lost 2 teeth in about 3 minutes! She is a very determined and brave girl...just like her big bro Thomas! He was always determined to get his out too. Jacqueline on the other hand, is very much like her Dad. She would leave her teeth in till they were hanging by a thread not wanting to feel an ounce of pain.

Congrats Emily. We better keep the rest in for a while or you won't be able to eat anything but snowies! ...hmmm :)
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Tuesday, June 16, 2009

SWINE FLU?!

Saturday Thomas started not feeling well. I came home in the late afternoon from shopping and realized he had a fever and looked horrible. We went to an Insta-care and they tested him for Type A Influenza but is came out negative. We were so relieved! We knew he had some kind of virus but AT LEAST it wasn't the Swine Flu!

On Monday he was still fevering and not getting any better. We decided to take him in again when the nurse told me that we may have tested him too early. That's exactly what happened!

He tested positive for Influenza A which means they treat him as if he has the Swine Flu. The State is so swamped with cases that they don't even test for Swine Flu unless they are hospitalized.

What does this mean for our family? Well, ALL of us are on medication in hopes that we will not get it. They only have "high risk" families do this since it is in such great demand. Believe me, you are glad you don't because with our insurance we had to pay $86.00 for each prescription! That would be $434.00 for Tamiflu!!! After spending $70.00 on doctor visits (because of going after hours) The Swine Flu has cost the Heaps family $500.00! Lovely isn't it? All I can say is, IT BETTER WORK!! :)

After talking with 3 different doctors and Emily's Bone Marrow Dr. they all told us the same thing; Thomas is to be quarantined to his bedroom and the rest of us live life like normal. If we have any symptoms at all though we are to assume we have the flu and quarantine ourselves immediately. Matt had felt a little under the weather on Monday so he decided to play it safe by staying home since he was supposed to give a presentation to the Senior Missionaries. He said, "I would feel horrible if I got them sick!" We were grateful when he woke up feeling great today but just to play it safe he stayed home anyway.

Matt and Jacqueline have been given the "green light" to go to girls camp on Wednesday as long as they are symptom free (obviously). We figure it will help having 3 days of medicine in their system. They are so glad they can go without worrying about getting everyone sick since you aren't contagious if you are symptom free as well as being on Tamiflu!

This morning Thomas couldn't even raise his head off his pillow. This picture shows how he looks now which is the best he's looked since Saturday. He's actually able to watch TV. All he could do before was lay in his dark room and sleep. This is NOT our Thomas! We are looking forward to having him "back" soon :)

We are being careful not to have people come into our home (even though I clean it with Lysol about every 2 hours and Thomas is in his room.) We would feel so horrible if someone got sick.

Ellie and Jacqueline were determined to still be together by having Ellie sit outside in the window well so she could keep Jac company while packing for girls camp. Friends are great!

We are looking forward to having things back to normal at the Heaps house and hopefully Thomas will be the only one that gets the "Piggy Flu" :)

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Sunday, June 14, 2009

No more Stinky, Hairy medicine!

Today is a very monumental day...it is Emily's last day of taking Cyclosporin...AKA the hairy immunosupressent medication. We decided to let everyone join in the celebration...


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HAPPY DAY!!!!!!

Our 10 Mile race!


Matt, Jacqueline and I ran in the Riverwoods 10 mile race on Saturday; along with my great running friends Leesa, Jessica and Stephanie.

Matt is nursing his IT band injury so his goal was to actually just finish the race. He ended up walking most of the way and when we found him on the trail, Mr. positive attitude Matt, was all smiles saying how much he enjoyed listening to the Tabernacle Choir on his i-pod while enjoying the beautiful Provo Canyon trail. He seriously makes lemonade out of any lemons that come his way! He accomplished his goal and finished the race! We are praying that he will heal quickly so he can continue training for our marathon in September. Either way, He is still huge WINNER in our eyes:)

I had the most amazing race! I was able to run with Jacqueline! She is a much better runner than I am but she chose to stay with her mom anyway and keep me motivated by singing me crazy camp songs when I was way to exhausted to even speak! (Matt was shocked!) My goal was to keep a 7:45 pace and that is EXACTLY what I did! I was slowing down at the end so I told Jac to go ahead(actually, I LET her go ahead because I didn't want her to feel bad when I won. Aren't I soo nice?)...in just 1 mile she passed 10 runners and came sprinting against another guy at 1:17!!! YA HOO (having to go to the bathroom was a great motivator!) I wasn't too far behind coming in at 1:18.30 but the big difference was that I had nothing left in me! No sprinting in at the end for me. (OK so I didn't LET her win!) I was just grateful that I hadn't stopped to walk! Jacqueline is AMAZING! Oh yea, did I mention that Jac was at Camp Hobe' all week eating unhealthy food and getting very little sleep? I thought that might give me a little edge but NOT A CHANCE!

My friends all came in before me (of course!) Leesa with a 1:12, and Stephanie and Jessica came in together at 1:15! Leesa came in 4th, I came in 5th (in my age group), Stephanie came in 6th and Jessica came in 7th. I guess it pays off to be older than all my friends :)

Grandpa and Grandma brought Emily, Thomas and Leo to cheer us on...they barely missed us because the race started a little early, but it was great to have them there to feel their support! Thanks guys!

It was a great day for running and especially to be able to run with great friends,my hubby and Jacqueline!

We are now trying to stay away from any need to go down stairs of any sort :) Jac woke up telling me she couldn't even move her legs... It hurts so good! (ha ha)

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Friday, June 12, 2009

Camp Hobe'

Jacqueline and Thomas spent 5 days (NOT a week, as Emily kept reminding me) at Camp Hobe'. It is a camp for cancer patients (and other life threatening diseases) and their siblings.

They went for 4 years when Emily had her first transplant and loved every minute! The first thing they thought about when we found out Emily was going to have a second one, was that they could go to camp Hobe' again.

As you can see in the pictures, they had a great time with their cabin buddies AND eachother; which makes mom very happy!

Jac came home saying how much she missed my food! Wow, I think being away can be a good thing sometimes :)

We are glad to have them home. Life just isn't the same without Jac and Thomas around!
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Our week with Emily

On Monday we took Jacqueline and Thomas to Camp Hobe'. It was a sad day :( 5 whole days without two of the greatest kids in the whole world! We didn't know how we would survive in such a quiet house!
Emily wanted to show them that she could still have a good time without them
All alone with Mom and Dad. WOW! Just think of the possibilities....
First of all...no sleeping downstairs without Jac and Thomas, "That's creepy"
Second, "I get to pick what we eat, and ALL the activities!"
Hmmm.....maybe being an only child isn't so bad :)

MONDAY

Our first stop was Great Harvest for a cookie, then on to a new park! Emily had a great time exploring and saying WOO HOO every 30 seconds!

For FHE we went to Boondocks for a mean game of miniature golf! Emily caught on very fast with Dad's great teaching. She also loved dancing to the music.
She was very nervous that the volcano would burn her and that the "Tiki" man was going to come to life or something. She even woke up the next morning talking about the "Tiki" man. She told me she needed to go back so she could get used to him.

Matt and I were neck and neck...well, to be honest I always seemed to have 1 or 2 up on him. Until...I made a hole in 1!!! That's not all, about 10 minutes later I did it again! Yes, I shot 2 holes in one. I am thinking of going Pro.

Matt couldn't stand not being in the lead so of course he got a hole in 1 on the 18th hole! I didn't want him to have a complex of knowing his wife is a better golfer. So, I did what I had to do....I missed the last hole...twice!

It was a TIE! Oh, we are SOOO good!!!! I did get a kiss out it. Boy oh boy was it worth it!
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Tuesday


After a very exciting day at the hospital; stopped by Temple Square hoping to see Dad. We couldn't reach him on his phone, so we went on a tour through the Beehive house. Emily LOVED it. Her favorite room was the playroom. The missionaries told us that husbands and wives didn't share the same room. She looked up at me and said LOUDLY, "How did they make babies then?" She is way too smart don't you think?

When we walked outside Matt called and I told him where we were. He laughed and said, "I can see you!" He was eating lunch across the street! We got to see DAD! Ya Hoo. We enjoyed sitting in a park and walking around with him during his break.

We had to make a stop at the Lion House Pantry for one of Jacqueline and Thomas' most favorite treats. A hot roll! Emily told me not to blog this because it would make them jealous and she didn't want them to feel bad. She is so sweet to her brother and sister! I promised her that we would take them with us next time :)
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Wednesday


DIPIDEE anyone? Emily loved picking out a green frog to eat for her "special treat" of the day! They are pretty darn cute :)
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Thursday

Emily had a great time with Cambry, Mia, and Kaleb at the Dinosaur Museum....some parts were pretty SCARY!


They enjoyed playing in the sand/water table building dams and islands for the little toy dinosaurs.

Emily got to end her night with a LATE NIGHT with Kaleb. What a perfect friend day :)
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Tuesday, June 9, 2009

GREAT NEWS!!!!

It's late, but I can't go to bed without telling everyone about our clinic visit today!

Emily's WBC went up from 1800 to 24oo, and her ANC went from 700 to 1300!!

THIS IS GREAT NEWS! I looked at Emily and reminded her what our family had fasted for this past Sunday. Our prayers and fasting are doing the trick! Emily started Woo Hooing and doing a little dance. It was so darn cute!

Her nurse even told me not to worry about her weight loss. She weighed in at 17.6 which is down from 18.4 last time. I was grateful!

Emily's last day on immuno-suppressants is SUNDAY! (We are going to have to celebrate)
Dr. Pulsipher came in and gave us the "plan". This means the next 3 months is test time. Will her body hold strong? Will her body make her own immunities? He even took her off IVIG, wanting to test her to see if she can fight things on her own.

We are hoping her body will start making Magnesium on it's own too because when it does, that means no more IV meds every day...which means she can have her central line OUT!

This is all very exciting but scary at the same time. We just have to put our faith in the Lord and let His will be our will. I know if I remember this, there will be no room for fear!

Dr. Pulsipher gave Emily the thumbs up to go to Camp Hobe' for a day camp next week which she is so excited about. It is in the mountains so it was questionable. He said, "As long as she doesn't touch dirt, isn't around dust and doesn't play in the water she should be just fine". Thank goodness it's a camp for kids with cancer and other illnesses that require chemo and transplants. They will totally understand!

Hopefully by the end of the summer she will have proven that her body is strong and able to fight off infections on her own! This will be a VERY EXCITING DAY for EVERYONE!!!

Thank you for keeping her in your prayers :)

SCID BUDDIES

Emily got to spend a few minutes with the first SCID patient we ever met. Ryan Berger! He is 8 years old and doing FANTASTIC! He and his mom, Deni, came up for a long term checkup so we had fun catching up with each other.
Deni has been such a great support through the years. We met them when Emily had her 1st transplant 7 years ago. It has been so great to have Ryan to look at and know that these kids really can be cured of this disease. You would NEVER be able to tell that he went through all that he did when he was a baby. (He might have a scar or two on his chest but that's it!)
Here's to many happy reunions with all of our SCID friends! We love and pray for you all!

Monday, June 8, 2009

Are these my kids?

I never know what the kids will come up with next. They LOVE to dress up and be CRAZY! It makes for some great LAUGHS and great MEMORIES! I've got lots of "blackmail" photos :)
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Sunday, June 7, 2009

Sunday BBQ


We are so lucky to have Joslyn and her friend Lacey staying at Grandma and Grandpa Whitings for the next few months. (Even more if we are lucky!)
It is fun to see them with constant smiles and laughter filling their apartment :) They definitely bring life to any party... No one is going to want them to leave!
Mitch and his friend Harry came up for EFY which was amazing as always. The girls are much cuter in Utah! (of course) They enjoyed other parts too I'm sure :)
I felt very sad for Mitch though because he told me that he couldn't sleep all week because he was so excited to see his very FAVORITE AUNT JILL! I hope he was able to get some sleep when he got back home. I know I am pretty special! :)
We are so lucky to be able to spend time with family...they are what makes life exciting and worthwhile!

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Wednesday, June 3, 2009

Goodbye school days!

Schools out!

Thomas enjoyed his first day hanging out with Mason all day and Matthew and Katie all night!

He especially enjoyed his "free" day of no chores! (Just wait till next week...)

Emily went to Mrs. Moores class for the last day of school fun. She had a great time signing books with every child's class picture in it. She said goodbye to her great teacher Mrs. Moore and to the 1st grade!

She celebrated the day with Anna Nelson. They were so excited to have a late night they put their PJ's on at 2:00 in the afternoon!

Jacqueline spent all day hanging with some great friends! Kenz, Jess and katy. They were very naughty and left school early because they didn't bring their yearbooks for signing. They decided to go on an adventure by walking to Subway for lunch, Costco for yogurt, and came back to our house for pizza night!
Summer here we come!