Friday, November 27, 2009

Black Friday


Happy Black Friday everyone!
If you are a diehard shopper you are out right now with millions of others searching for that bargain. I, however, am sitting here in my jammies, drinking my coffee and being very thankful for a wonderful day yesterday. A day that NEARLY didn't happen for Shawn.


Shawn woke up feeling tired but ok. That quickly changed. He took a bath and then immediately got nauseous and started vomiting. This was the first time treatment did this to him. He was so disappointed and worried he was going to ruin Thanksgiving for our kids.


My father-in-law quickly came to the rescue, picked up the kids and took them to their house so they wouldn't miss a thing.


We hung low for a few minutes once things settled down for Shawn, he asked me to read Psalms 39 to him. I quickly got the Bible and started reading, but as I was, it frightened me because it was all about how " life is but a breath,.....and do what you need to do before the time ends.....". I was not wanting to continue reading but thought to myself "if it's important to him I hope there's something positive coming" because I can't read much more of this!!! Well, I finished, proud of myself for getting through without tears, and he quietly looked at me and said "sorry, that was the wrong one, it was Psalms 139!~ (which was much more uplifting and about how God knew about you and your life before he created you) WHEW! I thought he was going down a dark dark path! ha ha


Soon after that he said "you're gonna think I am crazy but I am hungry!" I quickly reminded him that I felt that way 4 times with each of the kids!!! So he threw on his bath robe, and we shuffled off to his parents to get there just in time for a wonderful Thanksgiving feast!!! Way to go Mom Long!!!!

Of course, the day ended with Shawn and his brother Shannon lounging on the couch watching the Cowboys win, (in photo) me getting my butt kicked in 5 Crown (card game) and my sister-in-law, Jenn, and I sneaking off for a little Pre-Black-Friday shopping.

All is well in the Long household.
Love,
Jess

Thursday, November 26, 2009

Success!


Happy Thanksgiving everyone!

Shot given this morning successfully!

Enjoy your day and know that we are thankful for each and every one of you!

Love,
Jess

Wednesday, November 25, 2009

Great News!


Hi dear family and friends,

Great news today! Dr. Swinnen told us that the LP showed no signs of cancer in Shawn's central nervous system! AMEN!!! So we just need to focus on the lymphoma! He said that everything seems to be right on schedule and Shawn seems to be responding well to everything.


The headaches he has been having are called "low pressure" headaches most likely from the LP or possible leakage of spinal fluid. Nothing unusual or to worry about and will go away with time.


Tomorrow I have to give Shawn his Neulasta shot which is the same price as a very expensive diamond ($3,288.77)! So pray I don't screw it up!


Next apts. are Dec. 11th- LP, then the 16th- chemo, and the 18th -LP.


Thank you for all your prayers!

Keep them coming!

Love,

Jess


"Call upon Me in the day of trouble; I shall rescue you, and you will honor Me."

Psalms 50:15

Good news today!

Hello dear family and friends,


Dr. Swinnen just gave Shawn some very good news. The LP done last week showed no signs of the lymphoma in his central nervous system! Thank you God!


The headaches he is experiencing are most likely "low pressure headaches" from them removing spinal fluid during the Lumbar Puncture and perhaps leakage. They should go away with time.


We are sitting here in the treatment center and Shawn just saw a video of his dad with a shaved head! LOVE YOU DAD!


Thanks to everyone for all the prayers and support! We couldn't get through this without you!

Love,

Jess

Tuesday, November 24, 2009

Heading to Hopkins tomorrow





Hi everone,
Early tomorrow we head back down to Hopkins for Shawn's chemo treatment. Please pray that he doesn't experience the bad side effects like he did the first time! Also please pray for his headaches to ease up.

We are hoping to enjoy the Thanksgiving meal his mother is preparing on Thursday but if he isn't feeling up to it, he will stay home. Thanks and Happy Thanksgiving!
Love,
Jess

Monday, November 23, 2009

Consider giving the gift of Life!!!

I just spent the last few minutes doing something with the hopes of possibly one day saving someones life! I went to www.marrow.org and joined the national registry to be a bone marrow donor. And all it took was a few simple minutes of my time. It's free, they send you a kit to painlessly swab your cheek and a prepaid mailer to send it back to them!

Would you all please consider giving the gift of life? You never know whose life you could save!

Have a wonderful Thanksgiving Holiday!
Love,
Jess

"God has given us two hands- one for receiving and the other for giving" Billy Graham

Sunday, November 22, 2009

Happy Thanksgiving

Hello Everyone!
Today is Sunday, don't worry, you aren't late for dinner, and we are celebrating Thanksgiving early here at the Long household. We figured since Shawn may not be feeling up to it on the actual holiday, we would do it while he is feeling good. He got to make his famous turkey dinner after all! YEAY! I can hardly wait to eat it!

We had a wonderful child free night, thanks to our family, and celebrated our anniversary having dinner at Outback Steakhouse. A restaurant that has always had a special place in our hearts since we ate there on our honeymoon. It was delicious! And a very special night.

Shawn bit the bullet yesterday and buzzed his head. The hair was going quickly and just finding alot of the evidence on his bed pillow and sheets was enough for him to do it. He looks really good! Has that Bruce Willis look. Even Claire said "it's not that bad, I thought it was going to look horrible!" ha ha So all you men out there, get the razors out and support the cause! Maybe we can have a "Shave-off" and donate the proceeds to Lymphoma and Lukemia Research!

Enjoy this beautiful day!
Love,
Jess

"The Lord gives his people strength. The Lord blesses them with peace."
Psalm 29:11

Saturday, November 21, 2009

Happy Anniversary!

Happy 11th Anniversary Shawn! It has been 11 of the most wonderful years of my life! And I look forward to many more! I love you!

Love,
your wife

Wednesday, November 18, 2009

Shawn the human pin cushion

Hello everyone~!

Well, it looks as though your prayers worked today! Shawn's platelet count jumped to 67,000 today! Praise the Lord! And the radiologist did the lumbar puncture with no complications and Shawn didn't feel a thing!!! How awesome is God!!!!!

Aside from being totally exhausted from having to get up at 4:30am to arrive at Hopkins by 7:30am, all is well. We are just praying that he doesn't have any bad side effects today from this treatment. (severe headache) The doctor said drink caffeine and lots of fluids.

We got a prescription for his next Nulasta shot which I get to give him on Thanksgivng day!
Next trip to JH is next Wednesday!

Thanks for the prayers!
Love to all,
Jessie

Tuesday, November 17, 2009

Early morning tomorrow....



Hello dear family and friends,
Well, it was by the grace of God that I got all my Christmas decorations up yesterday! Our home is now glorious with the spirit of Christmas! The kids were awesome helpers! It's up early but since Shawn will be having chemo when I normally do this, I wanted it done while things were relatively quiet here at home.

Tomorrow we go to JH for Shawn's LP. The time keeps creeping up. Now we have to be there at 7:30am which means, leave at 5:30am! UGH! Oh well. He has to get his bloodwork done again, as yesterdays tests showed his platelet count was at 54,000. If it goes below 50, 000 he has to get a transfusion and it could interfere with the LP getting done. (FYI normal platelet counts are between 150,000 and 450,000) So, today's prayer request is that his platelet count doesn't drop below 50,000 so he can receive his treatment tomorrow as scheduled!

Thanks to my mom who has been amazing about coming up early to get the kids on the bus for us! Love you mom!

After tomorrow our next trip is next week (day before Thanksgiving) for IV chemo. It's sort of sad to think he could feel horrible for Thanksgiving because in the 11 years we will have been married, he has always cooked the turkey with cornbread and sausage stuffing! He makes the best turkeys! And is quite proud of it! mmmmmmm

Speaking of, this Saturday will be our 11th wedding anniversary! Not sure how we will be celebrating but It's funny because a few years ago when I had to have unexpected surgery to remove a grapefruit size mass along with my uterus (not knowing if it was cancer or not until after the surgery, which thankfully it wasn't), we celebrated that anniversary picking up my CT prep kit and eating at Wendys! I am hoping this year is a little less exciting! ha ha

It's interesting how things work out. Last year I got to make one of Shawn's life long dreams come true for our 10 year anniversary. I sent he and Ryan along with one of his best friends and his son to a Pittsburg Steelers game. I am so glad I got to do that. It means more to me this year than it ever did!

Have a wonderful evening everyone!!
Love,
Jess
"For the Lord your God is living among you. He is a mighty savior.He will take delight in you with gladness. With his love, he will calm all your fears. He will rejoyce over you with joyful songs." Zephaniah 3:17

Sunday, November 15, 2009

Good weekend

Well, this was a good weekend for Shawn. He said at one point Saturday he even forgot he was sick! Which is a great thing to hear! Because it is definitely something that is always in the back of our minds. Today was the final competition for Warwick High School Marching Band. We had the pleasure of getting to go to Hershey and watching our son, Kelly perform a great performance in the Pit! Shawn had a bit of difficulty walking so far and up so many steps, but the 70 degree weather and clear night made it worth the walk! The band took 3rd place in their division. It was a great night!

A few nights ago our pastor and a nearly all of the elders of our church came to our home and held an oil anointing ceremony for Shawn, in the book of James 5 13-18 it says: "13Is any one of you in trouble? He should pray. Is anyone happy? Let him sing songs of praise. 14Is any one of you sick? He should call the elders of the church to pray over him and anoint him with oil in the name of the Lord. 15And the prayer offered in faith will make the sick person well; the Lord will raise him up. If he has sinned, he will be forgiven. 16Therefore confess your sins to each other and pray for each other so that you may be healed. The prayer of a righteous man is powerful and effective"I have to say I was a bit nervous about the ceremony because I had never seen one and had no idea what to expect. I couldn't go to that dark place that I was fearful they would go and talk about, but they didn't. In fact, it was very uplifting, positive and quite powerful to experience! It gives me such strength to know so many prayerful people are praying for Shawn and my family!

Tomorrow is a fairly quiet day. Shawn has to get bloodwork done which can be done locally. Then we prepare for our trip to JH on Wednesday for the 2nd attempt at the lumbar puncture treatment. Pray they are successful!

We are looking forward to a less hectic schedule now that football and band are over!
Take care! Have a wonderful week!
Love,
Jess

"Cast all your cares upon Him, for He cares for you" 1 Peter 5:7

Thursday, November 12, 2009

Football Banquet

Last night was the beloved C team football banquet! It was an amazing turnout and I believe everyone had a wonderful time, including ourselves! Shawn was so touched by the boys when they all cheered as his picture came up on the slide show! They love him so and he them! It's truely amazing! As much fun as it was, it took alot out of him. Makes me realize he is really good at hiding how he is truely feeling.
It was a great feeling for me to personally thank all of the parents and boys for their support thus far! It really is an amazing group of people and we are very blessed to have been a part of their lives for a few short months!

Shawn is coming off the steroid, prednizone, and the doctors say he will probably hit a dip in his roller coaster ride. Less energy, etc....but hopefully that will mean he will actually be able to sleep, unlike while on the drug which keeps you awake!

Still a bit sore from the failed attempt at his LP the other day. Praying that goes much better the 2nd time around! And hopefully they will remember to give him the sedative next time! YIKES!

Activities are slowing down for us, last band competition is this Sunday and then we are free of e.c.a.'s (extra curricular activities) for a while. It will be good for the kids. They need a rest and all seem to want to stay close to home as much as possible. Plus it will be nice for me to not have to run so much.

That is about it for now! Hope everyone is enjoying a little fall weather and staying healthy!
Blessings,
Jess

"Yet what we suffer now is nothing compared to the glory He will give us later."
Romans 8:18

Tuesday, November 10, 2009

Frustrating Day

Well, Shawn and his dad traveled today to Johns Hopkins to get his spinal treatment. After receiving a call at 9:30am this morning from the Doctor's office asking him to be there at 11am (instead of 12:30) for bloodwork, they rushed down and quickly arrived at 11:30. Had bloodwork drawn, and waited for the results before the lumbar puncture could be performed. Once those results were back the treatment was attempted by the technologist who failed at getting the needle into his back 2 times. They were sent home, told the test needed to be done by a radiologist. It will be scheduled for sometime next week.

Shawn was very frustrated and disappointed with today. The technologist was not very sympathetic to his situation and very unprofessional. The first we have seen from JH, but he quickly found out that this person is not an employee of JH but a contracted employee. I guess that makes a big difference.

He is heading home now with the hopes to go to the midget football board meeting tonight. They are doing elections and he is wanting to hold onto his position as head coach of the c team for next year. After all, it is where he feels his best, on the field with his boys!

Monday, November 9, 2009

Email to football parents

After a wonderful game at the Blue Ridge Bowl Sunday afternoon and reflecting on what an awesome season it was coaching the Warwick Warriors C Team's 9 and 10-year-old youth footbal team, I sent this email to our players' parents. Watching these boys grow (probably more than usual) over the past 3 months was amazing and getting to know their parents has made it obvious why these boys are special. The future is bright.


Parents,

I want to thank all of you for an unforgettable football season with your boys. What a special group we had, and what a special group of parents who have shown my family and me such compassion and support during the past month-and-a-half! Your many kind gestures, cards, emails, delicious meals and supportive comments at practice and games have meant more to us than you will ever realize. After being specifically diagnosed (finally) with Stage IV large B-cell lymphoma, lots of additional testing, and then starting IV chemo treatments this past week at Johns-Hopkins, I am now free of the tumor fevers and as of this weekend am getting closer to sleeping through the night for the first time in way over a month. I go back on Tuesday for spinal chemo to keep the cancer out of my central nervous system. I will then continue with the IV and spinal chemo treatments every 3 weeks for 18 weeks to hopefully knock this out for good. My lovely wife, Jessie, set up a blog for anyone who would like to stay updated on the situation. The blog is at http://shawnsprayers.blogspot.com. Jessie has been my rock and the rock of our family, and I'm sure that those of you who have gotten to know her would agree that she is something special.

Enough about cancer. Some observations and thoughts about this year's C Team:

Today, our Black squad represented WMF as the only Warwick team to appear in this year's Red Rose League playoffs. They lost a hard-fought battle against Manheim Township's undefeated, top-seeded Section 1 team by a score of 20-6. Black had an awesome season, finishing second in Section 3 at 5-1 and with an overall record of 6-4. Dave Snyder and the Black assistant coaches put together quite a squad, instilling a gritty, blue-collar, team-first approach in these boys that pushed them to the top of the heap in Section 3, where the only better team, East Pete, was loaded with 10-year-olds. Our Black squad, on the other hand, was made up of all 9-year-olds and a few 10-year-olds who were either first or second-year football players. I could not be more proud of what the Black squad accomplished this season. Way to go guys!

Also today, our Red squad played Ephrata in the first "Blue Ridge Bowl" which was broadcast on Blue Ridge Cable 11 and will be re-broadcast Tuesday night at 8:00pm. WMF fielded teams in the B, C and D Divisions, and league directors from Ephrata and Warwick had agreed to 10-minute quarters (as opposed to 8) and that the first and third quarters would be played by second-string players, with starters playing the second and fourth quarters. This allowed all players to play
and appear on TV for this non-Red Rose League game. Red defeated the Ephrata Mounts 24-6, and we dedicated the game to our 10-year-olds, all of whom said after the game that they want to play on the B Team next year. With this win, Red finished the season with an overall record of 6-4, having gone 3-3 in Section 1.

With its win last week against Oxford, our JV squad finished the season with an impressive record of 6-1. To me, this is just as meaningful as the Red and Black varsity records because it shows that all of our players learned and developed solid football fundamentals this year and were able to successfully test their skills against their opponents. Watching the learning curve ramp-up over the course of the season for our JV players was very rewarding for us as coaches, and I think the players gained a great deal of confidence. Having JV games available was huge for our players and they and the coaches who coached these games had a blast. I want to thank WMF Director Mark Will for putting them together.

Since mid-August, our boys fought like Warriors on the field, and they certainly put in the hard work at practice, where games are really won or lost. I cannot explain how rewarding this season has been and cannot express how privileged I feel to have coached your boys. I could not be prouder of them.

Finally, I want to thank each of the other coaches, team moms, and other coaches wives. They way all of you stepped up during my difficulties and continued to put our players first was very reassuring to me, and I have occasionally been known to be a control freak. You guys put my mind at ease when it came to football and allowed me to focus on dealing with my illness and its related problems. The framed pictures, signed football, yellow LiveStrong bracelets, "Our Boys" book, etc. all were unnecessary, but greatly appreciated and they will be priceless reminders of this priceless season with all of you. Your concern and support have meant the world to me. I also want to thank you for what the coaches did for Jessie after she broke her bracelet trying to get me to quit running onto the field at Solanco the day after my liver biopsy. You guys are the best, and it has been an awesome experience coaching with you this season. Thank you.

I look forward to seeing all of you Wed. night at the banquet, especially now that I know how well some of you cook! It should be a lot of fun, and I will try not to get choked up too much. See you there.

God bless all you!

Shawn

Restful Weekend

Hi wonderful family and friends!

We had a wonderfully restful weekend and with Shawn finally getting some descent sleep, feel like we both got our "batteries" re-charged. We were fortunate enough to be at the amazing "Blue Ridge Bowl" yesterday to watch our boys win over Ephrata 24-6 and enjoy the beautiful weather too! It felt SO good to get outside and as Shawn has said through this all that he feels best when he is "out on the field with his boys"! That being said, I will really miss seeing you all every week at football practice and games! Seeing you all and just knowing you are there for us has given us strength to get through this so far. So even though we won't see you now, please feel free to email, call or stop by! I have enjoyed getting to know you all and hope to keep in touch!

Today we attempt to get caught up with the things here at home and at work.
I am taking Ryan to the dr. today as he came down with a bug this weekend and is
dealing with 101.7 fever and cough. Just praying that Shawn doesn't catch it!


Thanks to the amazing group of kids at Grace Church, Grace Student Ministries is awesome! You have shown our family amazing Christ-like love and God is proud of you!!! As we are too! We appreciate your gift so much! I look forward to meeting you all someday and re-paying the favor in some way! (I'm a pretty good baker so let me know what you like!)

Tomorrow we travel back to Johns Hopkins for Shawn's spinal treatment. We are so blessed to be near such an amazing hospital with World Class Doctors! I have nothing but the BEST to say about the facility and staff! You know they are there for you and they make every visit as pleasant as possible!

Happy Monday to all!
Blessings, Love,
Jess

"Praise the Lord, I tell myself, and never forget the good things he does for me. He forgives all my sins and heals all my diseases." Psalm 103:2-3

Friday, November 6, 2009

Bloodwork day


Today was a good day! Traveled to JH for a 10am bloodwork apt. (thank you Dr. Swinnen for suggesting a later apt. to avoid traffic and to be able to get the kids off!!) Shawn's bloodwork looked good so he got a Neulasta shot to boost production of white blood cells and a flu shot and we got to come back home in time to get the kids off the bus!! YEAY!

Shawn is feeling a little better today and I am actually seeing a bit of the old Shawn again! SOOOOOOO good to see!

We are both tired from a very long week of driving to JH nearly every day so we both are looking forward to having 3 days off from dr. apts!!!!

Next apt. is Tuesday for a lumbar puncture to put medicine into his spinal fluid to prevent any disease from spreading into his central nervous system.

Hope and pray everyone has a restful weekend!
Thanks for everything!
Love,
Jess

"When people are fondly remembered, it is for the compassion in their hearts- not for the list of their accomplishments."
God is in the Hard Stuff- Bruce & Stan

Thursday, November 5, 2009

The day after.....

Well, last night and this morning was/is very rough. Evidently the affects of chemo are affecting Shawn much faster than we anticipated. He didn't sleep well at all, has a runny nose, bloody nose, feels like he was "hit by a truck". All of which are very typical symptoms according to our nurse Kelly at Hopkins.

Today we are laying low, he is drinking alot of fluids, resting as much as possible and praying for a light at the end of this tunnel.

Tomorrow we go back to Hopkins for bloodwork. They will check to see if his body is able to process the desintegrating tumor. He may need fluids, or even possibly to be admitted. We will do whatever we have to!

Pray for his rest today!
Thanks to everyone for all the support!
Love,
Jess

"Yet what we suffer now is nothing compared to the glory He will give us later."
Romans 8:18

Wednesday, November 4, 2009

First Treatment

Today was Shawn's first chemo treatment....or as they call it R-CHOP in the oncology world! We are learning so much! It went very smoothly without complications and we got home around 6pm. Shawn was feeling great! Very excited and relieved it went well. Then around 7:30pm tonight his fever came back. We are pretty sure it is just the same fever he has been dealing with for the past month and a half but we called JH to double check to see if we should be concerned. They said it could take a couple days for his fevers and sweats to go away.

So for now, unless anything changes, we go back down on Friday at 10am for bloodwork.

Thanks to everyone for all of your prayers! We really appreciate them!
Sincerely,
Jess

"By His might power at work within us, He is able to acomplish infinitely more than would ever dare to ask or hope." Ephesians 3:20

Today is the day we have waited so long for!

It's 5:15am and Shawn is getting ready for his first day of treatment. It's the day we have all waited so long for and I can hardly believe it is finally here! We are heading to JH in 15 minutes and we will be there all day. Please pray the treatment goes smoothly and they can do it all today so we can have tomorrow off to recover.

I know Shawn is nervous so pray for him to find peace and joy in this. I am too but I know that it's what has to be done to keep him alive and that brings me some bit of excitement to know we are fighting! FINALLY! Fight like a warrior!!!

Thanks to our football boys for the awesome signed football gift. We will treasure it forever! And thanks to the coaches for the great book! We both look forward to reading it!!

Talk to you all soon!
Love,
Jess

"In His will is our peace" Dante Alighieri

Tuesday, November 3, 2009

Tomorrow is Shawn's first treatment FINALLY!

Today is Shawn's PET scan! One more day until treatment! We are so excited it is finally here! We are both feeling very much at peace and optomistic about the treatment plan. Thank you SO MUCH to everyone that has delivered meals to help us!! It is VERY VERY Much appreciated and very helpful for our family!! I can't say THANK YOU enough! We feel so very blessed to have such great friends and family! God is good! And thank you to everyone who has sent other gifts! It was a very nice surprise and very uplifting during an extremely difficult time for us.

A bit of a change in plans this week, JH couldn't schedule the spinal treatment this week so it is scheduled for next Tuesday. We are finding that as a bit of a blessing since that means we have NO dr. apts. or trips Thursday!! (unless there are complications) So after a VERY (I think I use that word too much. ha ha) long day of treatment on Wednesday (8+ hrs) Shawn will have all day Thursday to recover. Then Friday we are back down to JH for bloodwork and testing to follow up on Shawn's levels to make sure his systems are functioning well.

A bit of I guess you could say not so great news, come January Shawn's firm has decided to switch insurance companies. Which makes me very worried about what will happen in that aspect. Hopefully there won't be any issues with his treatment with the new company and hopefully they will accept us with his pre-existing condition!! But I know this is all in God's hands and as my favorite quote says "There's alot to think about, but nothing to worry about"!

I hope everyone knows how much we love you all and are so thankful to have you in our lives!
Have a wonderful day!
Jessie

"We are pressed on every side by troubles, but we are not crushed and broken. We are perplexed, but we don't give up and quit. We are hunted down, but God never abandons us. We get knocked down, but we get up again and keep going" 2 Corinthians 4:8-9

Tomorrow is Shawn's first treatment!!!