Cris' Battle

The Battle Has Been Won

2010-09-25T13:19:00.000-04:00

We fought hard. All of us. It was a long, strenuous battle and one that we may not have asked for, but that we faced with courage and strength and humility all at once. Especially Mom.

On September 21, 2010, Mom's battle ended. She won. No, not by getting a transplant or a miraculous healing. She won because she finished well. She did all she could do and then trusted God to bring the victory. The victory was that He sent His Son to die for her and she accepted Him. So when she took her last, labored breath here on Earth, the next breath she took was breathing in her Savior's sweet presence.

I can only imagine what her first words were when she arrived. She was so animated in this life, and I think we keep our personalities (maybe just a sanctified version of them) in Heaven, so she no doubt had something exciting to exclaim.

Fluffy with the Food Network

2010-05-30T12:51:00.003-04:00

One of Mom's favorite channels is the Food Network. She loves watching them give tips and fix recipes and could probably keep tuned in all day sometimes! Whenever I come to the house, she always has some treat she wants me to try. So far, I've done recipes by Paula Deen, Bobby Flay, Rachael Ray, and Barefoot Contessa's (Ultimate Ginger Cookies) just to name a few.

Undoubtedly, when I arrived this week to spend extended time with her, and even though we were all kind of dealing with a new reality of this stage of the disease, she had her trusty list already being constructed and wanted me to hit the grocery store to pick up some coveted items.

So I felt like the next Food Network Star this week as I tried a few dishes:

Filet Mignon stir fry with red and yellow bell peppers, broccoli, baby bella mushrooms, water chestnuts, bean sprouts, onions, garlic and special sauce over rice. She loved this so much she ate it for breakfast the next day!
Veal scallopini with lima beans and cheddar/pecorrino romano au gratin potatoes.
Chicken salad
Various omelets
Skirt steak fajitas

I also introduced her to Palmetto Cheese, the best pimento cheese in the world. She loved it on anything, Triscuits, Fresh Market's Toasted French Rounds, and especially croissants. We also had some family friends provide a beautiful Honeybaked Ham and dinner from a local restaurant so we wouldn't have to cook every meal.

I'll admit that I took a little pride in the fact that she cleared her plate every meal. I was glad to be able to serve her in that way.

It was tough to try to stick to my healthy eating plan while cooking all of these new dishes. It's gotta be way more fun trying to gain weight than it is trying to get skinny. She says that she's rather be 'fluffy' than skinny any day.

Our Only Hope...

2010-05-30T12:30:00.002-04:00

For the last month had been trying to convince the Cleveland Clinic not to take her off the transplant list. They were debating whether or not to take her off because she was weakening and they were afraid that if they ever did find the right lungs that she would not make it through surgery in her state. Her weight had dropped and she was struggling with tasks that took minimal movement.

She was holding out hope. She was trying to force food down her throat despite a nonexistent appetite. She was keeping a smile on her face (well, she ALWAYS does that) and trying to sound strong even though she had been in and out of the hospital twice this month for dehydration and other various ailments.

Finally, after she returned home from the most recent hospital stay, she talked to her doctor in Cleveland and conceded that she is, indeed, too weak to travel to Cleveland for her upcoming appointment and/or any future transplant.

Furthermore, she also allowed the Cleveland Clinic to write a script for hospice to come in and help. They began this week with many visits from nurse techs, nurses, social workers, etc...It has been a tiring week for all of us, to say the least.

Reading this, it would seem normal for one to think, "they've lost all hope now that there's no transplant that could take place." I'd like to say that for us, there's only been ONE hope all along, and that is God. God is our only hope through life or death. God is our only hope. He is the One who will get us through this and will make something beautiful out of it. The transplant was not our hope. We don't put our hope in medicine or doctors or people. We put our hope in the the One who made the people and the doctors and the medicine and who has taken on all of our diseases upon Himself.

Isaiah 40:31 says "but those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint."

Lord, please continue to keep our eyes fixed on You, not on our situation or on anything else. I pray that You would help us to run and walk without growing weary while we continue to minister to Mom and make her as comfortable as possible. Renew our strength Lord, in our minds, in our bodies, and in our spirits. Our only hope is You, Lord. Our only hope is You.

Enjoying the Deck Again

2010-04-13T22:57:00.003-04:00

Brandon and I brought the girls down today to see Mom and Dad. They had to miss Allie's first birthday party last weekend, so we brought the birthday girl down to them to enjoy another cupcake and little celebration. It was absolutely gorgeous outside, and the pollen wasn't even all that bad, so we grilled out on Dad's beloved Ducane grill (steak and aspargus) and also had baked potatoes, salad, and beets (Mom's craving of the day, I guess...she comes up with funny ones from time to time.)

Anyway, Ella ate an adult sized portion of steak...she LOVED it! She kept saying, "give me more of my steak, please!" and eating it all up in a hurry. Allie even enjoyed little mini pieces and then devoured a carrot cake mini-cupcake after we all sung 'Happy Birthday' (led by Ella) to her. They both love being the center of attention.

We all really enjoyed having Mom outside with us. Like I said before, the weather couldn't have been any more perfect. She really savored every bite of dinner, and was able to eat a lot (for her) and keep it all down (so far), so that was really great. She kept saying, "oh, this is so good. OH, this is sooooooo good!"

After dinner and once I put the girls down for bed, we sat outside and remembered other wonderful meals outside on the deck in days past. The deck has truly been such a source of fun and fond memories for us.

Brandon reminded us of his first dinner here when I brought him home to meet Mom and Dad. We had steak and chicken and my parents got the biggest kick out of how much he could eat.
I remembered the year after college that I lived back at home with Mom and Dad and how I was working in a restaurant so I would lay out on the deck every day during the summer and read books and work on my tan....I remember how I was hating life back then but now I would do anything to have a few days to read and sun on the deck again without trying to corral two toddlers!
Dad remembered falling off the ladder while building the deck...(we're glad he's still here to remember that). What a miracle that he wasn't seriously injured. (For those of you who haven't seen our two story deck, Dad fell off the ladder from the top of the top level onto the concrete driveway and had the ladder fall on top of him...and then walked away!)
Mom enjoyed the flowers that Karen had planted all around the last time she was here, and mentioned how the deck has been such a peaceful place (especially in the morning with a newspaper and coffee!).

Anyway, it was a wonderful night. It was a night that I will cherish in my heart for years to come. I got some pics, but forgot the cord thingy that connects my camera to the computer, so I'll have to wait to post them.

Psalm 30

2010-03-09T11:18:00.002-05:00

Yesterday I was visiting Mom and we decided to do a little Bible study. She said, "I want to look up a verse about joy because I feel like I need some more joy in my life." So I remembered a song verse that says, "Though sorrow may last for a night, His joy comes in the morning" and I looked in the back of my Bible for a reference to that verse. I found it in Psalm 30, and read the entire psalm out loud.

1 I will exalt you, Lord , for you rescued me.
You refused to let my enemies triumph over me.
2 O Lord my God, I cried to you for help,
and you restored my health.
3 You brought me up from the grave, O Lord .
You kept me from falling into the pit of death.

4 Sing to the Lord , all you godly ones!
Praise his holy name.
5 For his anger lasts only a moment,
but his favor lasts a lifetime!
Weeping may last through the night,
but joy comes with the morning.

6 When I was prosperous, I said,
"Nothing can stop me now!"
7 Your favor, O Lord , made me as secure as a mountain.
Then you turned away from me, and I was shattered.

8 I cried out to you, O Lord .
I begged the Lord for mercy, saying,
9 "What will you gain if I die,
if I sink into the grave?
Can my dust praise you?
Can it tell of your faithfulness?
10 Hear me, Lord , and have mercy on me.
Help me, O Lord ."

11 You have turned my mourning into joyful dancing.
You have taken away my clothes of mourning and clothed me with joy,
12 that I might sing praises to you and not be silent.
O Lord my God, I will give you thanks forever!

I thought, wow...this is a great passage that we need to really think about. So I personalized it for Mom and read it out loud again.

1 I will exalt you, Lord , for you rescued my mom.
You refused to let Pulmonary Hyperstension triumph over her.
2 O Lord our God, we cried to you for help,
and you restored Mom's health.
3 You brought her up from the grave, O Lord .
You kept her from falling into the pit of death.

4 We will Sing to the Lord , all us who know you!
Praise his holy name.
5 For his anger lasts only a moment,
but his favor lasts a lifetime!
Weeping may last through the night,
but joy comes with the morning.

6 Before Pulmonary Hypertension, she said,
"Nothing can stop me now!"
7 Your favor, O Lord , made me as secure as a mountain.
Then you allowed this to strike, and her pride was shattered.

8 She gave her heart to you, she cried out to you, O Lord .
She begged the Lord for mercy, saying,
9 "What will you gain if I die,
if I sink into the grave?
Can my dust praise you?
Can it tell of your faithfulness?
10 Hear me, Lord , and have mercy on me.
Help me, O Lord ."

11 You have turned our mourning into joyful dancing.
You have taken away our clothes of mourning and clothed us with joy,
12 that we might sing praises to you and not be silent.
O Lord my God, we will give you thanks forever!

Mom said, "it's like He wrote that just for me."

A cool thing about it is that I don't remember ever reading this passage with these 'eyes'...through the lenses that I did yesterday. God uses His Word to touch our hearts when we need it. He perfectly provides what we need at the time we need it.

It is quickly becoming a passage that I am learning to confess over Mom. She was once lost and didn't know her need for God, but now she has accepted Him in her life and knows she is His child. He will get glory from anything, whether life or death...but we believe that Mom has so much in her that she will be used in the Kingdom for great and mighty things after she is healed.

Sufficient Grace

2010-02-24T11:44:00.002-05:00

2 Corinthians 12:9 But he said to me, "My grace is sufficient for you, for my power is made perfect in weakness." Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me.

I spent some time with mom and dad this week. She had been to Cleveland again earlier in the month for a checkup, and was in good spirits during that visit. She mentioned how beautiful all the snow was as they drove up to Ohio. Her checkup went as well as possible and Mom and Dad were encouraged to know that there are about 4-5 'hits' each day: lungs that become available that go through the process of being matched to a donor...That's a good number, but so far, no matches. The doctors told them, "We really like you. You're special, and we soooo want to find a match for you!" If only that was all we needed! Mom would have been running around with Ella and Allie long ago!

After returning home, Mom had some chest pains, which resulted in her waking Daddy up in the middle of the night and going to the ER in Columbia. She was diagnosed with pneumonia and put on many antibiotics and meds to help ease her pain. She was released after about 6 days.

Since then, she's been feeling very puny. She's been vomiting, coughing, and generally too weak to do much more than lay in bed.

I took the girls down to see her and bring some encouragement on Monday. She got some good snuggle time with Ella in the bed as they watched Dora the Explorer and other cartoons and took some naps together. It's getting tougher, though, to be able to bring the girls down because of all the activity they bring with them. It's just too much for her to endure.

I had a few special moments with her by ourselves. I was able to give her a massage on her back and head (she's a sucker for a back scratch and head rub! That must be where I get it from, cause I love it, too).

She's getting weaker, to put it bluntly. I am just past the sugar-coating stage. Is that OK? I don't even know who reads this anyway, so it's more like a journal for me to document the journey when I get a few minutes here and there.

God told us that when we are weak, He is strong. When we are wasting away, He is being built up. He said that His grace is sufficient for us. His power is made perfect in our weakness.

I am seeing that happen in Mom. The peace that overwhelms her circumstances is precious. She has fought a good fight. She is still fighting, and I believe that she will finish well, whether that includes coming out on the other end of a successful lung transplant or not. God is becoming more in her as she becomes less. Her gentle and contrite spirit God will not reject.

And I continue to give God glory for what is happening. I will not blame Him. He is the author of LIFE, not death. He has sustained us through this. And He promises that this world is not the end, but the beginning of an eternal life which He has provided for us through his Son, Jesus Christ. I am thankful that both she and my dad have put their trust in Him alone.

So if there is anyone else reading this, I encourage you to continue to seek Him as you think about Mom. I pray that the eyes of your hearts will be opened in order that you may know the hope to which he has called you, the riches of his glorious inheritance in the saints, and his incomparably great power for us who believe.

Caretaking

2010-02-01T14:55:00.002-05:00

Giving around-the-clock care is difficult, to say the least. My dad, as I have mentioned before, does a pretty amazing job at keeping Mom alive, comfortable and cared for. But things can get pretty tense (as anyone would imagine) when one's life is flipped up-side-down and the day to day activities and thoughts literally revolve around another's care. So here are a few tips for anyone who finds himself in the role of a caretaker.

15 Tips to Help You Care for Your Family Yourself

Eat smart and exercise. You'll be surprised at the energy you'll gain from choosing nutritious foods and finding time for some daily physical activity.
Get plenty of rest.
Be kind to yourself. Give yourself credit for what you do.
Set realistic goals and expectations.
Cut yourself some slack. Nobody’s perfect. Even the best caregivers occasionally find themselves getting impatient, stressed or frustrated. Learn to think about these feelings not as evidence of your failure but as cues that you need some time to yourself.
Schedule “me time.” Caregiving is a job and rest is your earned right. Reward yourself with respite breaks often.
Set limits and let everyone know what they are.
When people offer to help, accept the offer and suggest specific things they can do.
Watch for signs of depression, and don’t delay in getting professional help when you need it.
Grieve your losses, and then allow yourself to dream new dreams.
Learn what helps you relieve stress – keep a list and use it. Try walking, reading, listening to music, take up a new hobby, or take a nap!
Remember your spiritual health. You can make good use of your own spiritual beliefs to cope during difficult times. Many caregivers find great solace in meditation, prayer or time spent in nature.
Share your feelings with family and friends.
Seek support from other caregivers. There is great comfort in knowing that you are not alone. Talk with other caregivers at PH support group meetings, and try to arrange for a caregiver support group to be held at the same time as your local patient group. Also be sure to sign up for our email group for caregivers and other family members of PH patients. Join PHA Family now (Requires a free Google account. Please allow a short delay while your group membership is processed.)
If it gets to be “too much,” talk to your doctor, another healthcare professional or a member of the clergy.

The Everyday Reality of It All.

2010-01-18T14:39:00.003-05:00

Last Friday was my 31st birthday...and I was excited because Mom and Dad were going to be coming up to see us. It's always a big deal when they come up because rarely does Mom have the energy to travel and be in a different place. It's way easier for them to stay home and have us come to them. But they had offered to give us some free babysitting so we could have a birthday date night.

Unfortunately, they had to cancel on Friday afternoon because Mom was having a migraine and just wasn't feeling up to it. We totally understood, and were able to secure other childcare provisions (thanks to Brandon's mom). But I'd be lying to you if I didn't admit I was just a smidge disappointed. But that's the reality of it. The everyday reality of it.

A Great Encouragement

2010-01-18T14:01:00.002-05:00

"But let us encourage one another--and even more as we see the Day approaching!" -Hebrews 10:25

We have been so encouraged since we have partnered with the National Transplant Assistance Fund (NTAF). To date, we have had over 50 individuals and corporations generously contribute to our lung transplant fund. That money has been (or will be) used to pay for bills that medical insurance doesn't cover...things like travel expenses while going back and forth to Cleveland, OH for bi-monthly checkups, medicine and other medical bills.

You may or may not understand what a wonderful thing it is to have some of the stress related to finances for this disease lifted off of our family's shoulders. It allows us to concentrate more readily on taking the best care of Mom...and allows her less worry and more time to concentrate on hanging in there, taking good care of herself, and making the most of every opportunity to live life to the fullest.

So, it seems like such a small thing to say (rather, type) THANK YOU, but if you're reading this and you are one of the many who have helped us, we would like to do just that.

Thankful for Comic Relief!

2009-11-29T15:31:00.003-05:00

Mom and Dad were able to join us for Thanksgiving this year. I made my first Turkey Day feast (see my other blog, http://berrybrandonnicole.blogspot.com for more info on that), and we had a wonderful time together with Brandon's family.

One funny thing that happened was before we ate, we all went around the table sharing what everyone was thankful for in our lives. At the beginning of this exercise, Ella announced that she had to use the potty (she's in training these days), so someone ushered her excitedly into the bathroom. We heard her potty play the reward music and she ran back into the living room announcing, "I did it!!!". We all clapped and congratulated her and then went back to our pre-meal sharing time.

Then as Mom was sharing what was in her heart...and the tears were coming to us as emotions were running high, Ella decided that our applause wasn't enough for her because she ran back to the bathroom and carried her potty (it hadn't even yet been emptied!) down the hall and to the dining table, exclaiming, "Guys, I pee-peed in the POTTY! See?????"

Thank God for a little comic relief, right?

Another Good E & A Fix

2009-11-19T14:39:00.003-05:00

After being discharged from the Cleveland Clinic this weekend, Mom and Dad stopped in Greenville to see us on Sunday night on their way home. It had been a while since their last "E & A fix", and they needed a booster shot, so to speak.

The girls were excited to see Grammy and Pappy, too. We let them stay up a little later on Sunday night to see them when they arrived. We all went to bed shortly after that and woke up on Monday morning to some good breakfast and family time.

Brandon had to go into the office around lunch, but the rest of us stayed home and enjoyed each other's company immensely. It is interesting to see how much we cherish each minute now. Some of them are filled with joy, some sadness...it's all a part of the process, I guess. We are past the wierdness of spontaneous tears...they seem to come and go throughout the day. But, for the most part, we're just having fun watching Ella and Allie be awesome kids.

Allie has always had eyes for her Grammy. Mom says she looks at her like she sees her soul or something. It's fun to watch them stare at each other. Allie has gotten to be quite active now, though, so she'll grab for Mom's oxygen mask or at her Flolan tubes, so I have to be close by to make sure things stay where they should...supervised visits!

They left on Tuesday morning, and headed to Columbia. It had been a week since they'd been home and seen their kitties, who I'm sure, were very glad to have them back.

If all goes as planned and Mom's up to it, I'm hosting Thanksgiving at my house and both families will be here to celebrate.

We have much to be thankful for.

A Little Run Down

2009-11-12T14:13:00.004-05:00

Mom and Dad made a trip up to Cleveland for a checkup. The trip often times wears her out, so I was not surprised to hear that they admitted her to the hospital to get her back on her feet again. She said last night was rough as they gave her some potassium which upset her stomach. Dad is with her right now, and they have not yet heard when they will be discharged. We are looking forward to the possiblity of them stopping by for an E & A Fix (see below for details). It all depends on how she's feeling on the trip home.

Speaking of Ella & Allie...they are doing great. Allie is getting her 4th tooth in today, so she's a little bit fussy. She's also crawling at lightning fast speeds, pulling up on anything she can, cruising around the furniture, and also doing a little, "look mom, no hands!" and standing on her own before her diapered heiny hits the floor. She's so animated and energetic--I have a hard time keeping up with her! Yesterday she was pulling up on the coffee table and bumped her eye on the underside of one of the corners that juts out...I thought I was such a good mama for child-proofing the corners from the top-side in case they fall into them...didn't think about doing the underside, too! She's fine, didn't cry too much I was more upset than her...a tough little girl and a tough lesson for mama.

By the way...happy birthday to Dale (one of mom's bff's) and Mommom (Mom's mom!) Love y'all! Another year old and better looking, I say!

Now to the 'Fund' Part...

2009-11-10T15:47:00.003-05:00

This November will mark the 4 year anniversary of Cris’ diagnosis with PH, and she has defied all of the prognosis reports she’s been given thus far! We are so thankful to have her with us as she continues to spread love, joy, and encouragement to everyone. Since she’s begun battling, she’s seen the birth of two granddaughters who brighten her life in special ways, and have given her even more reason not to give up. With all that we have to be thankful for, we are still very aware that we are in a battle. Cris’ disease is in its last stage. She is currently on the transplant list for a new set of lungs, and an anticipated surgery is set to be performed at the Cleveland Clinic in OH, one of the country’s best hospitals.

Despite the fact that many lungs have already been given to other recipients because they have not matched Cris, the doctors are still saying that there is hope, and that the matching lungs could arrive any minute. So we continue to believe that she will have another opportunity to live life to the fullest and have an impact on those around her for years to come. When a matching pair of lungs arrives, the Cleveland Clinic will notify Jack and Cris and then send a private jet to transport them to Cleveland where final tests will be performed to ensure the best success rate. The operation will then take place. After the operation, Cris can expect to stay in the hospital a couple of weeks and then be discharged to rehabilitate anywhere from 8 to 10 weeks. During this time Jack will no doubt be by her side encouraging her healing, and I (Nicole) will be traveling back and forth as much as possible.

Until then, every two months, Jack and Cris travel to Cleveland for her examinations by the transplant team. This is a long and difficult endeavor, but they have been able to make the most of it. Jack has considerably reduced his business workload to be able to give Cris around-the-clock care. Who knew that he would turn out to be so great a nurse and caregiver?!? We are amazed at the sacrificial love that he has displayed again and again.

Unfortunately, with all the travel expenses to Ohio and North Carolina, and the impending uninsured costs of the transplant, rehabilitation, medication, and caretaker expenses in Cleveland, our family is looking at what seems to be an ever-increasing pile of potential financial hardship. We have come to the humbling realization that we cannot do everything on our own. We have been blessed to be surrounded by faithful friends and family, coworkers and neighbors who have asked again and again, “what can I do to help?”

Asking for help is never easy, and you may know that it is especially hard for someone who is used to giving the help. With that being said, we would like to ask you to consider how you may help the Malseed family in our time of need. Here are a few ways:

• We have partnered with the National Transplant Assistance Fund, a non-profit organization that has been assisting the transplant community for the past 25 years. All contributions are administered by NTAF exclusively for uninsured transplant-related expenses. Donations are tax-deductible to the full extent of the law. You can send your tax-deductible donations with the attached form to: NTAF South-Atlantic Lung Transplant Fund, 150 N. Radnor Chester Rd., Ste. F-120, Radnor, PA 19087. Print in memo section of check: “In Honor of Cris Malseed” or donate online at www.transplantfund.org and enter Malseed in the box on the NTAF homepage.
• Every uplifting word can help Cris and Jack. You can encourage them by dropping a note in the mail or email (crismalseed@hotmail.com, jackmalseed@hotmail.com). You can also follow updates through our blog: http://battlingph.blogspot.com.
• We believe in a mighty God who has the power to do anything…far beyond what we can even ask or imagine (Ephesians 3:20)! It would mean so much for you to join us in praying for God’s will to be done in this situation, for Him to provide through His people, and for Him to be glorified in our lives. Pray for continued strength and patience for our family as we battle Pulmonary Hypertension.

Thank you in advance for your love and support.
Joyfully,

The Malseed Family (Cris, Jack, and Nicole Berry)

Contributions are tax-deductible to the extent allowed by the law. This campaign is administered by the National Transplant Assistance Fund, a 501(c)(3) nonprofit providing fundraising assistance to transplant and catastrophic injury patients. Information: 800-642-8399.

That's What Friends Are For!

2009-10-26T15:16:00.002-04:00

For good times, for bad times...I'll be on your side forevermore...That's what friends are for...

Mom had a hard week last week. On Wednesday she had an attack during the short amount of time that she was left alone while Dad had to get something done outside the house. She had to get across the room to get a new tank of oxygen (when she walks, she has to switch from a machine to a tank because the tank can deliever more oxygen at a time than the machine-she went through her tank much more quickly than expected on this day), and wasn't able to lift it (anyone got a good idea for a lighter oxygen tank...we could be millionaires!). She broke out in a cold sweat, and by the time she got the tank where it needed to be, her sweaty palms couldn't grip the dial enough to turn it on! She called Dad, who sent a neighbor over to help until he could arrive.

It took her much longer to recover from that episode than she would've liked, and she had to miss the 60th birthday party of one of her closest friends. By the time it rolled around on Saturday, she was too weak to take a shower, and Dad ended up calling the ambulance to come and take her to the ER to be evaluated as to whether Cleveland should send a plane to come and get her and put her on a heart/lung machine to await her transplant. At the ER it was determined that she wasn't as bad. Her meds were adjusted and they were sent home. By Sunday, she felt a lot better.

But before she left the ER, she was surprised by her friends who were all at the party! Dale, the hostess, had been in contact with Dad, and after celebrating Dee's 60th for a while at the house, the whole crew packed up a couple of plates of food and trucked it down to Lexington Medical Center where they went in 2 by 2 to see Mom and Dad! While it was an awesome act, I really wasn't surprised when I heard what happened.

Mom & Dad have been in the same group of friends for close to 30 years. Most of the gang lived in our cul-de-sac when we moved to SC back in 1982. Others have been added to the group through one person or another. The tight-knit clan has seen many ups and downs...divorce and the death of loved ones, celebrations of marriage and grandbabies, graduations and promotions...through thick and thin they have always been together. We are so thankful to have this "family" in our lives, especially when tough times come along.

All I Want For Christmas...

2009-10-24T00:09:00.003-04:00

It's getting to be that time...time to start planning how we are going to spend the holidays. Things get sticky when you get married and have to split time between the two families-especially when there are grandkids involved.

We have found that since we've been married, we've been more apt to give the creme de la creme time to my parents, and have often times had to fit in Brandon's family when we could. This is for obvious reasons, but in case you're not into the obvious, I'll spell it out for you...every holiday we think, "well, this could be our last..."

Our first Christmas together as a married couple, Brandon and I spent at MUSC. I remember wanting so badly to carry on our family tradition of going out to lunch on Christmas Eve. Since Mom was in the hospital, that obviously wasn't possible. But Brandon and I went throughout downtown Charleston (not a bad place to be, if you've got to be visiting a hospital) and got takeout from various favorite restaurants. We brought it back, put some white sheets over a rolling tray and had a spread that I still remember tasted and looked so good...right there in her room. Then Brandon pulled out his violin and played Christmas carols for Mom and all the nurses and anyone else who was confined to a hospital bed. I remember waking up in my best friend's parents' house and being with them as they opened gifts, then going over to visit mom in her hospital room. It was very strange, but very sweet. It was the first year that we didn't really have presents to open or a tree to sit around, but we realized how blessed we were to just have each other.

During our second Christmas together, I remember being at Mom and Dad's on Christmas Eve. No lunch, no takeout, but Mom did manage to cook that year. I remember her wanting to pray that night before we opened our gifts. It was a precious prayer that I will never forget...we were all so thankful to be together, so thankful for the new life that was growing inside of my womb at the time, so thankful for our relationships with Jesus.

During our third Christmas together, Ella was only a few months old. Mom and Dad were living in NC, and Mom was in the Duke program. We tried to go out to our Christmas Eve lunch, but chose a horrible restaurant. Mom started not feeling well, and by that evening Dad had to take her to the ER at Duke where she was admitted. Brandon and I stayed at their apartment and read Cosmic Christmas to some family members before turning in. In the morning, we packed up our stuff, drove to the hospital and sat with Mom and Dad as Ella cooed at them in her little Santa hat and Christmas pjs.

Last year was our 4th Christmas together. Christmas Eve lunch was spent out again at Macaroni Grille. The cool story about that outing was that Brandon and I offered to pay because we had redeemed CC points for a gift certificate...only problem was that it hadn't come in yet! So we were waiting all week for it. Mom and Dad drove to Greenville to spend the night with us and we were literally getting in the car to go to lunch when the mailman arrived and delivered our gift certificate! Woohoo! We had an awesome meal together, and Mom and Dad got to watch Ella tear into gifts around our huge Christmas tree. It was a very special holiday for all of us.

So...this will be our 5th Christmas together, and Mom's 5th Christmas with Pulmonary Hypertension. Allie has joined our family and will experience Christmas for the first time. Ella will be really into it, I'm sure.

We are always thankful for each passing year we have together, but they seem to be ever sweeter when we understand the possiblity that each may be our last. We hold each moment tightly and cherish each memory. This Christmas would be a great time to celebrate Mom's recovery with a new pair of lungs! That's all I want for Christmas...

A special thanks to the Berry family for your understanding hearts and attitudes. The grace you've bestowed on us during these tough times has been outstanding, especially around the holidays when our travel plans have usually been centered around Mom and Dad's whereabouts and conditions.

Fundraising

2009-10-12T12:54:00.003-04:00

Well...I admit, we're getting a late start on this. I don't know what kept us from getting going on raising funds for Mom's transplant, but whatever it was...we finally got with the program. Or...we're getting with the program.

We are considering partnering with the National Transplant Assistance Fund to help us raise funds to pay for transplant-related expenses that are not covered by Mom's insurance.

Please stay posted to find out how you can help!

A Real Catch

2009-10-07T14:29:00.004-04:00

My friend from Furman, Megan Carson, wrote a book about going on blind dates and finding "the One". I have enjoyed getting on her website (http://www.megancarson.com/) and reading her blog posts. Today I came across an article that she found in the Boston Globe, written by a breast cancer doctor.

http://www.boston.com/bostonglobe/magazine/articles/2009/10/04/will_he_hold_your_purse/

If you don't want to read the whole article, the gist of it is that there is a misconception among many young singles who are looking for lifelong partners...they think they want partners to romance them with sunset walks on beaches and French food. But what the author is pointing out is that the REAL CATCH is someone who will hold his wife's purse as she gets radiation treatment for breast cancer. I inserted my parent's situation with Pulmonary Hypertension in for her references to Cancer and this is what I came up with:

WANTED: A partner for richer or poorer and for better or worse and absolutely, positively in sickness and in health. A partner for fishing and French food and beach walks and kayak trips, but also for phone calls from physicians with bad news, and who will keep his cell phone close at all times waiting for "the call". A guy who knows that while much of marriage is a 50-50 give-and-take, sometimes it’s more like 90-10, and that’s OK, even when the 90-10 phase goes on and on. A man who truly doesn’t care what somebody looks like after battling PH for 4 years, in and out of ICU, and with a permanent port sticking in her chest, or at least will never reveal that he’s given it a moment’s thought. A guy who’s got some comfort level with secretions and knows the value of a cool, damp washcloth. A partner who knows to remove the computer mouse from a woman’s hand when she types phrases like “Pulmonary Hypertension death sentence” in a Google search. And, most of all, a partner who will sit in a transplant clinic waiting room and hold hard onto the purse on his lap.

Daddy, you are a REAL CATCH, and Mom's a very blessed woman to have caught you.

The E & A Fix

2009-10-05T16:36:00.003-04:00

Mom and Dad affectionately say they need an "E & A fix". That's Ella and Allie, their precious grandbabies who live about an hour and a half away. And then they say, "and of course we want to see you and Brandon, too!" Riiiiight! I know where I stand now! Ha ha! :)

Brandon and I decided to pack up the car and the kids and trek down there. We arrived Friday at lunchtime and had a wonderful visit. Allie has just cut two teeth and is beginning to crawl. Tomorrow she will be 6 months old. Ella is into everything, and was a total angel the whole time we were there.

We had some good talks, some difficult talks, some great weather, some great food, and a lot of fun. There are a lot of topics of conversation that I honestly never thought I'd have to engage in at such a young age concerning tying up loose ends "just in case". Mom has always liked to be prepared, and I'm glad for it.

Most of our time was just spent in each other's company. It is a precious commodity that I don't take for granted anymore.

Cleveland Trip September 2009

2009-10-05T16:28:00.002-04:00

Mom and Dad went to Cleveland the last week in September to meet with her transplant team. Honestly, they told her they were surprised to see her again because she was so sick the last time she was there two months ago. (They go every two months for check ups while she waits for a matching new pair of lungs to become available.) At that last appointment she was given very grim news, but just like every other prognosis report, she has outlived it and surprised the doctors in doing so. I wonder why they keep giving her timelines?

So, the doctors said that everything is being done to find a match, but unfortunately they have already performed 124 transplants since she has been #1 on the list (that means that each available pair goes through her grid first to see if it's a match and if not, it goes through the #2 person's grid, and so on).

That's a lot of lungs.

Mom's issues have to do with size and her antibodies in her blood. She has a very high amount of antibodies, so a qualifiying pair of lungs will have to come from someone who has a low amount so that they do not fight, and her body doesn't reject them. We knew going into this that there was a small percentage chance that she would have a match come available. But barring a miracle, it's our only chance, so we're taking it!

Anyway, the rest of the trip went quickly and uneventfully. She didn't get admitted to the hospital this time, so we were all thankful. On their way home, Mom and Dad got to stop in Greensboro to visit Leslie & Keith, and Karen & Dennis. These are Dad's cousins (Keith and Karen). Leslie is battling against cancer, so they wanted to go and encourage her in her time of need.

Battling PH

2009-10-05T15:03:00.000-04:00

Cris Malseed is battling Pulmonary Hypertension. Stay tuned for updates.