Remicade Day

Today’s Remicade treatment was successful! This morning, it was a struggle to eat breakfast. The pain made me cry. However, three hours into the treatment this afternoon, I was eating a bagel and cream cheese from the hospital cafeteria. Tonight, I had noodles and Mexican wrap for dinner. I do not understand how the Remicade works in my body, but I am so thankful it does. I’m thankful my body can tolerate the procedure.

There was a mix-up with the doctor’s orders, so we had to wait two hours before the nurse could even start the Remicade procedure. Mom, Qavah, and I made the most of the time. Of course, I got my pedicure. Qavah enjoyed looking at magazines and taking short walks with Mom. She even got to see her transfusion doctor. Paul Burton also visited us; he had Qavah giggling within minutes. Around 4:00pm, Dad came over to the hospital. Mom took Qavah home, while Dad stayed with me. He read me a chapter I had to complete for my Mass Media Law class. We had a great time together with the conversation being downright fun and lively (at least I thought so- the nurse didn’t think the subject matter sounded very interesting)!

Comments:

1. Fairlight Says:
   September 24th, 2007 at 8:39 pm

   Was thinking of you when I woke up this morning, and thanking God that your Remicade day had come to relieve your suffering at last!

   You and your sissy are so cute together.:-)

2. Aunt Lil Says:
   September 24th, 2007 at 8:50 pm

   Katy, I think we all heave a great sigh of relief when your Remicaide med kicks in and you can eat and feel like a human being again. Thank God that He designed this world with things that make the medicines we need! And the world is full of them, many yet to be discovered, I’m sure. I hope they find some new things trying to give you and Quavah relief. I believe God reveals these things to scientists who are intensely searching for answers.

   I’m hoping that the lice problem is soon behind you, too! Oh, dear. I’m reminded of once when your Uncle Tommy - a guy with a really comical tongue at times, got some chicken lice in his hair after cleaning the chicken coop. He said that it felt like the lice would stand on their hind legs and wiggle a hair - a dreadfully ticklish sensation! I guess its better to laugh about it than to cry! May the Good Lord deliver you all! Love, Aunt Lil

3. Karen Tillman Says:
   September 24th, 2007 at 10:01 pm

   Glad to see you held it together, and am so glad that you can eat again for awhile anyway!!! Nothing like being on prednisone and not being able to EAT!!!! UGH!!! You guys are just to cute.
   Love and payers always
   Karen Tillman

4. Jess Says:
   September 25th, 2007 at 11:56 am

   Hey Katy!
   I love the pictures - thank you for being so faithful to update and let us all know what’s going on! I’m so glad that the remicade has kicked in - it’s such a huge blessing - I agree with Aunt Lil - I think we all heave a sigh of relief when we know that Remicade Day has arrived and done it’s work. I ran into your mom yesterday at Food Lion - it’s always so fun to bump into someone especially when you get to have an update early! She is such an encouragement to me!

   We love ya’ll!
   Jess

5. Amie Says:
   October 10th, 2007 at 5:48 pm

   So glad to hear your doing better!!

6. Heather Says:
   November 14th, 2007 at 8:01 pm

   Hey Katy! Thanks for your prayers! hope you are doing ok!

Wednesday

I’m sorry I have not updated in awhile. It’s been a crazy week! I don’t feel that good health-wise tonight. I’m thankful Monday is Remicade Day. The Lord has been gracious in that He’s protecting my body this week. I’ve been able to keep going, but with each passing day, the effort is greater and harder.

Can I say I really dislike lice? I’ve never been a fan of bugs, even though I enjoyed Science class growing up. Now, I have one more creature to add to my “hope I never see again” list.

I switched my clothes from Spring/Summer to Fall/Winter today. I kept a few favorite summer outfits out, because I’m sure we’ll still have warm days. I prefer warm weather, so I am always a bit disappointed when I get out the sweaters, turtle necks, and heavy skirts. The clothing switch is much more fun in the Spring!

I’ve added two new pictures of Qavah on the Photos page. I was going to make this post a Wordless Wednesday and display the pictures here, but I decided to write an update instead. In the first picture, the dress Qavah is wearing is just precious! It has little girls and puppy dogs on it. When I first saw it, I thought of Beatrix Potter. Then, I thought of the song, “These Are A Few of My Favorite Things”.

Comments:

1. Jess Says:
   September 19th, 2007 at 9:18 pm

   I think anything with more than 4 legs gets put on the ‘hope I never see again’ list….I’m sooo not a fan of creepy crawlers! I think her new hairdo is really fun - not many can pull it off…she does the ‘Demi Moore look’ well!

   Love ya!
   Jes

2. Aunt Lil Says:
   September 20th, 2007 at 3:48 pm

   Katy dear, I’m back - from travels and guests - checked in to read while in Idaho, but this is the first I’ve seen the LICE stories! OH MY GOODNESS! I hope they are behind for good. We never had lice that I remember of, but I do remember having bed bugs, contracted from some one at school, likely. Your Aunt Doris would remember. She remembers everything! A phenomenal mind. Anyway, we had to burn an 8 hour candle in the house and close it up and stay away all day. Its the only time I remember our whole family taking an all-day off vacation on the farm! Mama packed a lot of food and we all carried something I’m sure. We trekked up through the little woods on “Thompson’s Hill” to the east of our house, and near the top where the woods run out, we camped out and played and picnic’d the whole day! There was a big patch of low growing, soft curly “wire-grass” as a playground and a big patch of teaberry plants - they get little red berries and the young leaves are delicious, too. They are what is used for “wintergreen” flavoring in tooth-paste and pink candy lozenges that Daddy loved. There was a little spring coming out of the side of the hill just below the wiry grass, and a few large maples and lots of young trees for shade. I may have been about 10 years old. That precious day in my memories was the great good out of our bed bug episode! (A little aside about Uncle Tony: He wasn’t familiar with teaberry plants, and I found one at a nursery and brought it home and planted it for old-times’ sake. It finally grew some berries, and I picked one and gave it to him to eat. He chewed a couple of times and the spit it out!! saying “It tastes like toothpaste!” I laughed a lot and said “No, toothpaste tastes like teaberries!”) That’s why I love Pepsodent original, it’s teaberry flavor Hope this little story gives a lift to these difficult just-before-Remicaide-days. Love much, Aunt Lil

3. Heather Kirkwood Says:
   September 20th, 2007 at 4:40 pm

   Hey Katy, glad you’re hanging in there. I got your e-mail - just haven’t had the energy to respond to an ever growing pile of e-mails. But I will respond. Hopefully tonight I can update the blog and explain some of what’s been going on this week. I’m a little loopy though……just really tired.

4. Doris Harriff Says:
   September 22nd, 2007 at 2:25 pm

   About the bedbugs Lily mentioned - we got them in the mattress of a bed we bought at an auction. I remember burning the mattress, and the formaldehyde candle! Daddy didn’t go on the picnic, he was working in the fields all day, and took his lunch with him.
   Aunt Doris

---

Miracles Abound Everywhere

I’m about to go to bed, but it feels oh-so-good to be home! Our home is filled with peace tonight. Even unspeakable peace…it’s just powerful and all-consuming. We can feel the Lord’s presence here and how different it is tonight than Wednesday and Thursday. Dad, Mom and I just finished a time of raising our voices in praise for all the Lord has done this week.

We got home around 3:00pm and this evening has been one of those times I want to pinch myself to see if it’s all real. Mom cleaned the house last night, so everything feels fresh and lovely. She even washed my sheets! I read to Qavah tonight while she was taking her bath. She was filled with compassion at the hospital today and joy tonight in being home playing with me. I just scarfed down a warm sunny-bun filled with blueberry cream cheese that Mom has dubbed the Shenandoah Valley Donut (incidentally, I enjoyed a Bavarian cream donut last night at the hospital when Dad got donuts as a treat). I do have to say Mom’s snack is delicious and really does taste like something you’d find at Dunkin’ Donuts or Krispy Kreme. Be sure to visit our Campbell Cafe for a sample.

Every time we go to the hospital, the Lord always gives us an opportunity to minister to someone or be ministered by someone. The nurses last night on the Oncology and Hematology floor were excellent. They were quiet, but attentive (Rehab 3). They also remembered and were overjoyed to see Paul Burton, since he used to work on that unit. In the course of our talking together with two of the nurses, Mom said “Well, all things do work together for good”. One of the nurses piped up, replying, “Yes it does when you believe Romans 8:28″! We were able to have a meaningful and blessed prayer time with this nurse before she ended her shift. These are the events and “small miracles” from the Lord that keep me going when the physical pain becomes unbearable.

Below is a picture I took the other night of a sunset. It’s not the most amazing picture, but the peace I feel tonight is displayed in this photo.

Comments:

1. Trisha Ferris Says:
   September 14th, 2007 at 9:48 pm

   Katy,
   There’s nothing like being back in your own bed & clean sheets are the best. You know, there are probably millions of blogs out there, some not worth 2 cents, but yours is fantastic. I can’td go to bed at night until I’ve checked for a new post. Wouldn’t it be great to also read the stories of those whose lives hae been blessed by your story? Perhaps in Heaven we will.
   Trisha

2. Jennifer S. :-) Says:
   September 15th, 2007 at 6:55 am

   Welcome home Katy
   Love and prayers,
   Jen

3. Karen Tillman Says:
   September 15th, 2007 at 1:00 pm

   Katy,
   I am so glad that you are feeling better, and pray that God will continue to give you wisdom durig this time of transition with doctors. Btw…I love the picture that you took!!
   Take care and again glad you are doing soooo well.
   Love
   Karen Tillman

4. Aunt Lil Says:
   September 15th, 2007 at 7:03 pm

   Dearest Katy - how wonderful to read that you were experiencing that “peace of God that passes all understanding” when you got home! How well I know that peace, that comes after a great trial, and sometimes, by God’s amazing grace, right in the middle of one… I don’t know how people live without Him. Your sunset of peace is lovely. It reminds me of a slide I have from Zaire, high on the mountain top close to the “Heidi cabin”. (I am now in my friend Helen’s home, in Idaho. It was she and husband Al who took me up there and retrieved me) I got a few rare relief days when another missionary nurse came to help. It was when we were still having some cholera cases and many others things, and no doctor… It was heaven to be there alone, above many of the clouds, and I took a blanket out to a grassy field. Lying there in the sunny warmth, I took a picture of a blue sky with fluffy clouds, the lush grass and a single large perfect brilliant red “paint=brush” stalk in the middle. I call the picture “Serenity”. That is the feeling in your home.

   I am so glad you are better, and home - I’d read the blog here yesterday and we talked and prayed for you. Love, Aunt Lil

   Love, Aunt Lil

Labor Day Pictures

Below are some pictures from Labor Day when Colin, Jenn, and Annelise visited.

Qavah meeting Annelise:

Annelise almost crawling (9 months old):

Qavah playing with big brother Colin:

Qavah enjoying her new glider:

Swinging Fun:

“The Girls”:

Comments:

1. Tiffany Allen Says:
   September 10th, 2007 at 8:09 am

   Hi Everyone,

   What wonderful family pictures! Ryan sat on my lap while I was looking at them and giggled with delight. He loves looking at pictures, especially ones with children! Hope to see more soon!

   Tiffany

2. Doris Harriff Says:
   September 10th, 2007 at 8:29 am

   Looks like everyone is enjoying the new swing set!

   Aunt Doris

Visiting Grandparents

Yesterday, my family visited my grandparents in Fishersville. I wanted to attend, but as soon I woke up in the morning, I knew that wasn’t going to be possible. It was an HPS flare-up day and thus I spent most of yesterday in bed. I still find it discouraging and disappointing to alter my plans, especially when they involve family visits. However, our friend Linda stayed with me until everyone got home, so that made me feel better. Below are a few pictures Mom took of yesterday’s visit.

Aunt Jackie and cousin Laura:

Mom and Qavah:

Qavah opening a gift:

New books to read with Daddy!

Playing with Grandmom’s cat:

Qavah with Granddaddy looking on:

Comments:

1. Aunt Lil Says:
   September 8th, 2007 at 10:54 pm

   I think Grandaddy is just reading a book, as always!! Thanks for sharing these, Katy, and so very sorry you didn’t get to go along. I can imagine your disappointment, and how I pray that Jesus will guide the doctors to know what they should do. I can’t imagine what it is like to go back to these symptoms over and over, I know that you feel Jesus’ presence with you, and know you just keep on clinging to Him, our refuge and fortress, our God, in Whom we trust. Love, Aunt Lil

2. Jenice Pearl Says:
   September 9th, 2007 at 5:38 pm

   Katy,
   What a blessing it was to visit with you today after worship! I was twice blessed in meeting Qavah there. She sparkles that one! May you continue to feel well. I look forward to seeing you Thursday night.
   Jenice

3. Jess Says:
   September 9th, 2007 at 8:05 pm

   I love the new pictures! They are so fun! Thanks for sharing them. I’m sorry that you didn’t get to go on the outing - I’m amazed by your resiliency. I know it must get discuraging for you to alter your plans but like your mom has posted before - the Lord really has given you a joyful spirit! I enjoyed visiting with you for a few minutes this evening and I look forward to more Sundays when we can chat! Noah was so cute when we got home - he wanted to tell Daddy everything that went on! I’m sure Qavah was the same way!
   Love ya!
   Jess

Delights of a Sister

I’m trying to update more often on my site, since I told Mom yesterday that I wanted the Medical Update’s section to stick to mostly medical-related updates and issues, rather than “Qavah” stories. It has been one full week and the week is not over yet! I am finding that I’m wanting or needing to be with Qavah so much that my schoolwork is a bit neglected. When we are babysitting Annelise, it takes both Mom and me to watch the girls. Fortunately, I was able to get some paperwork accomplished last night and this morning on the way to my doctor’s appointment. I’m also going to do some tonight, now that Qavah is sleeping.

We’ve had several doctor appointments this week and that always throws off the routine. I expect I’ll get into the “groove” eventually and everything will even out in the end. I’m thankful I’m only taking six credits this semester and that I’m almost done. I praise the Lord I did not have these HPS flare ups and issues when I was just beginning college.

The failed Prednisone taper was a source of frustration this week. I feel the adverse side affects of that drug everyday. All of my doctors tell me I need to be off of it. And yet, my body seems to crave it like candy. My primary care physician, (PCP), whom I visited today, agrees that we may need to increase the Imuran dosage while I’m trying to taper the Prednisone. Fortunately, the PCP offered to talk with my endocrinologist and gastroenterologist himself to figure out another plan of action. I’m so grateful, because sometimes I get very weary trying to manage my own care with the medical community.

The PCP also took extra blood work today, so he can begin observing vitamin levels with my malobsorption issues. Qavah watched me get “stuck” today and I think it helped her emotionally. At least, when my doctor’s appointment was finished, Qavah was extra joyful…I think she was just thankful she wasn’t the one being poked and prodded today!

It has been delightful to watch and play with Qavah. I’m learning patience and how to be silly, all at the same time. Qavah is always interested in helping me around the house. So, I am teaching her how to unload the silverware tray from the dishwasher. She doesn’t exactly get the hang of “big” and “small” spoons, but she actually does quite well with the sorting.

I’ve been trying to do about an hour of school with Qavah a day. This week, we are working on the letter “A” and color “red”. I’m constantly amazed at Qavah’s thinking patterns, interests, and requests. She just mesmerizes me!

I’m also getting a new realization of how much the Heavenly Father must enjoy watching us as I observe my little sister. Earlier this week, we were playing “house” together. Qavah was holding her baby doll and, all of the sudden, she started leaving her bedroom, so I asked her where she was going. Qavah didn’t answer, so I followed her to the bathroom. She had undressed her doll and gotten a wet washcloth from the shower to clean her “baby”. Qavah was very gentle and thorough. I didn’t tell her to clean her baby, but at four years old, she was already displaying love and careful attention to detail.

Comments:

1. Aunt Lil Says:
   September 6th, 2007 at 8:08 pm

   Katy, I believe Jesus will need to give you some miracle help to get your adrenals back, and that’s been my prayer for some time. But you need to try all the medical avenues, and I hope this team really gets to work on planning your program so you don’t have that undue burden.

   This is a sweetheart of a letter as you give us a look at your interaction with your little sister. May the blessings of joy continue! Love, Aunt Lil

2. Trisha Ferris Says:
   September 7th, 2007 at 7:38 am

   Qavah is very blessed to have you, Katy, a sister who notices even the little positives in her behavior. She will grow up knowing she has value & being able to appreciate even the smallest gift from God. This is part of what God meant when He told you He had work for you yet to do.
   Trisha

3. Heather Kirkwood Says:
   September 8th, 2007 at 9:57 pm

   Hey Katy,
   I’m so sorry to hear about the steroid issue - I know how frustrating that can be! I’ve had a tough week so I haven’t been able to check in as much as usual, but reading about you and Quavah puts a smile on my face!

Birthday Celebration

Last year, I spent my Birthday in the guest room on TPN. I couldn’t eat and I had to sleep in between surprise visits from friends. This year’s celebration was very different! We had a family party with ginger noodles, carrot cake, and Aunt Julie visiting. Thank you for the emails, cards, and well-wishes. I had a fun day!

Several weeks ago, Mom asked me what I wanted for my Birthday. I replied, “My sister!” So, in addition to actually having Qavah here, I also received a charm from my new sister that says, “Little sister”. Below are a few pictures from the celebration.

Comments:

1. Aunt Lil Says:
   September 4th, 2007 at 9:27 pm

   Katy, thanks so much for the pics. Its hard to tell WHO or which is the real party girl! I’d say one had as much fun as the other! May the Lord Jesus give you a blessed, much more healthy year ahead. And I pray that the prednisone decrease will go well and that you will be able to complete it. I am so thankfor for this much more SENSIBLE plan for reduction!

   Love you, Aunt Lil

2. Adam Thompson Says:
   September 4th, 2007 at 9:49 pm

   Happy Birthday, Katy! Hope you’ve had a great day!

3. Sandy Says:
   September 5th, 2007 at 12:19 pm

   Those pictures are great! I’m so glad you had a good day!

4. Karen Tillman Says:
   September 6th, 2007 at 11:23 am

   I am so glad that this year was much better, and here’s to a lot more good years to come!!!
   Love
   Karen Tillman

Sunday Pictures

I will probably create a new web page soon where I can post pictures of Qavah. Until then, here are some pictures from my parents’ trip and today:

Introducing My New Sister:

Qavah meeting Daddy:

Qavah reading with Daddy:

Qavah with Mommy at the Hospital getting a transfusion:

Qavah with Mommy:

Qavah with Paul Burton and Katy after Church:

Comments:

1. Trina Miller Says:
   September 2nd, 2007 at 10:30 pm

   Hi Katy and Family. Qavah is so beautiful! Your family is such a blessing to me and I can’t wait to follow Qavah’s journey in the days ahead. Yes, she needs her own page so we can see more pictures. What a beautiful smile!!!

2. Doris Harriff Says:
   September 3rd, 2007 at 9:20 am

   Looks like Qavah is very happy with her new family! But, oh, those skinny little arms - so noticable in the picture where she is hugging Mommy. I guess it’s what Lily said, probably a factor in the disease she has.

3. Fairlight Says:
   September 3rd, 2007 at 10:50 am

   Oh, what a BEAUTIFUL smile she has! She is so precious. Thank you for sharing all the pictures…and welcome home, Qavah!

4. Aunt Lil Says:
   September 3rd, 2007 at 12:15 pm

   Katy, both you and Qavah look RADIANT! Blessings on your new sisterhood! Love, Aunt Lil

5. Karen Tillman Says:
   September 3rd, 2007 at 7:46 pm

   Hey Katy,
   How beautiful Qavah is!!!! I know you are excited to have her home with you and your wonderful family. I will pray the transition to continue smoothly, and that your prednisone taper will go well. It is truly a drug one desires to be rid of!!!
   Love to you and your family
   Karen Tillman

6. Sarah Says:
   September 3rd, 2007 at 8:56 pm

   Oh your new little sister is so darling and beautiful!!!

7. Jess Says:
   September 3rd, 2007 at 9:02 pm

   Hey!
   It was soo good to see you and the rest of the family at church yesterday! You are going to be such a great big sister!!! I’m excited for your family - we can’t wait to meet her…

   I’ll pray for the taper! We love ya!
   Jess

8. LouAnne Says:
   September 4th, 2007 at 9:01 pm

   Oh!! She IS radiant! I know it must be such a blessing to have your little miracle home with you at last. Please know you have our prayers during her transition and we’re not that far away should you need anything at all. ((((Happy Hugs))))