God Bless the Givers (Day +3)

They say it is more blessed to give than to receive. Jason and I believe that statement. For years we have been receiving and, although we are grateful, we would rather be the people who are giving to others. We know what it is like to need something or to ask others for help, and it is humbling. Hopefully, one day, we can be the givers. Until then, thank you all for  giving to us. It has made all that we have been through become an opportunity to learn, grow and make new friends, and it has definitely made our situation better.

Since Jason’s health problems returned five years ago there have been many who have given to help us. For all of the meals, treats, small toys, gift cards and financial blessings, thank you! One of my favorite gifts since coming to the hospital this time has been the Chocolate Cherry Hemp body lotion from my cousin Nancy (Oh my gosh, I could eat it with a spoon). And so many people have prayed for us, given us financial help, brought us food and gifts . . .

In this hospital there are many givers. If I may, I would like to take the time to show you a couple of amazing examples of giving. I hope they will serve as inspiration to you. I hope all of us are helping our friends and family who are on difficult journeys. But what could you do for a stranger? Personally, I find it easier to give to strangers than to friends – of this I am not sure why.

While I was enjoying a momentary break to sip my hot chocolate and look for photo opportunities I noticed a basket that I had seen over the years and I wanted to inform people about it. This particular basket was filled with all sorts of beautiful, crocheted hats, free to take for any cancer patient (Jason is often treated in the same areas as cancer patients). In the past, I have seen similar baskets filled with scarfs and mittens as well. The tag on the basket says “Peggy’s Hats for Cancer.” These hats are incredibly popular on this floor of the hospital. When walking past patient rooms you will see nearly every woman and some men wearing them. They have become some kind of fashion statement among those who are fighting a war for their lives.

These hats are nothing fancy or extravagant. They are not spun from gold or embellished with expensive accessories. They are just hats. But I cannot tell you how many people have taken from this basket to cover their baldness or to simply keep their heads warm after the chemotherapy has stripped their hairs from their heads. I have seen similar baskets in the children’s hospital, in the chemotherapy units, and obviously in the inpatient hallways.

What a simple way to show people you care. What a unique way to help others and spread some love while making people feel well.

Another wonderful example of giving is through those who are willing to walk directly into your situation and offer you healing through the arts. Last year, Jason and I made friends with Kevin and Laurie. Kevin was undergoing a transplant and we were able to ask them questions about the procedure and also just chat about life. I couldn’t believe it when they told me that they are from Gays Mills, WI, a town my family and I would visit every year during their Apple Fest to sell our artwork. Even stranger that they have an orchard that we have frequented!

Their daughter Amy, a music therapist, was able to help write and compile songs written by cancer patients and their caregivers. There is a lot of talent in this CD, and the stories the lyrics tell are incredibly touching. The words will give anyone a great insight into the emotions and struggles that these people have felt and endured and, thanks to Amy and others like her, their stories can be told through lyrics and music.

Thanks to Laurie and Kevin, who also have their own songs on the discs, Jason and I have a copy of the CD. I would highly recommend it to anyone looking for a gift for someone who has been through or is going through serious and life-changing events such as cancer, or if you wish to peek into the hearts of those who have faced tremendous obstacles. You can purchase the CD on the Gundersen Lutheran hospital website here: http://www.gundluth.org/cancer/hope-grows

If you are willing to help others, be creative and use the gifts you currently possess to make a difference. Perhaps you can crochet hats or write music or maybe there is something else that you can do. Don’t be shy about helping others.

We have different gifts, according to the grace given to each of us. If your gift is prophesying, then prophesy in accordance with your faith;  if it is serving, then serve; if it is teaching, then teach;  if it is to encourage, then give encouragement; if it is giving, then give generously; if it is to lead, do it diligently; if it is to show mercy,
do it cheerfully. - Romans 12:6-8

*On a more personal note, Jason’s headache from yesterday lasted 27 ½ hours before he no longer needed painkillers. This morning he is feeling better and even ate breakfast. Hopefully his Tacrolimus level has lowered. When they do resume his regimen for the drug they will lower the dosage.  

Happy New Birthday PART 2

The infusion of the bone marrow went well for Jason. No real reactions. And now his brother’s marrow can attach itself to Jason and slowly grow. In two to three weeks hopefully we will see some results. As the months go by things will become less and less serious and more and more exciting.

Today was exciting but more than excitement we are touched and blessed. After all, only 30% of siblings are possible bone marrow transplant donors. And it is not likely for the donor to be a perfect match. Jason has two perfect matches and both were willing to give to him.

One of Jason’s favorite nurses was along for the ride and took a picture with him. You can see Holly’s pic below.

And when Aaron woke up (funny stories to come) he was able to join his brother and watch as the first cells entered his body. Parents and siblings were also invited to the event, which is about as anti-climactic as a blood transfusion. Risks for Jason would have been reactions to the small bits of Aaron's red cells that they were unable to extract fully from the marrow. You can see the bag of marrow labeled "biohazard" in Jason's hands in the image below. Jason could have reacted to the marrow with shaking, chills, or other almost "allergic" reactions. Aaron's blood type is A-, and Jason's is O- so if a few red blood cells from Aaron enter his blood stream his body could try to harm them and a reaction would begin. Between Cytoxin chemotherapy, ATG (A horse enzyme called Anti-Thymacite Globulin) and Steroids, Jason's immune system was all but gone so fighting Aaron's blood during the transfusion didn't occur. 

Obviously Aaron has been through a lot. His back has received 300 harvests. And, after the “washing” process, 500 ml of his marrow was taken to give to Jason. His back hurts, he’s going to be appreciative of pain pills and time off. We are so happy that he was willing to go through this surgery and time of discomfort so that Jason could hopefully be well. If he lets you look at his back you will see a couple of decent-sized holes. I would compare them to the diameter of a Culver’s straw but I only saw them for a second. Either way, those are some big holes in his back!

I heard through the grapevine that Aaron woke up from his surgery swinging his fists at the nurses. Hilariously enough, he had told Jason that he would wake up swingin’.

For now, all is well. Aaron is resting, Jason is not in any pain tonight but he is emotional about the process his brother has undergone so that he could live. He read a particularly touching text message from his brother last night that brought tears to his eyes.

Be sure to ask Erica about the “caveman” nurse, and how the doctors yanked Aaron's bandages off of his back.

That’s all for now! We are going to bed early . . .

Happy New Birthday

“Happy New Birthday!” Shouted the cheerful nurse who entered our room at 6:00 AM. We took a long pause.

Yes, that’s right, it is Jason’s new birthday. Something we had never heard but makes a great deal of sense. Today, March 5, 2013 is a day we hope to be able to celebrate. A day we can look back to and say, “That was one of the best decisions we have made.” A day about which we can tell our children (if we choose, as a married couple, to have any children), A day we can smile about and cheerfully celebrate every time it arrives.

While there are some around us who look at us with furrowed brows, pursed lips, and concerned eyes, we are looking at each other with excitement. Don’t get us wrong, we are not enjoying the pain and the idea that this may not work. But we believe that it will work. And we are hopeful.

No one can fully understand what it is that we have gone through together. Perhaps they can quote facts and numbers, and repeat the story as it was told to them by someone who heard it from someone who told them, but only Jason can know what he felt and understand his situation.  I am proud of who my husband has become despite all that he has faced.

Today is a good day but we have a long way to go. Let’s hope that the effects of the chemotherapy do not make him too ill. Let us also hope that, during the three months of home isolation, he will not be exposed to any sickness that could harm his health and recovery. Let us hope that in the next six months of avoiding groups and events he will not get bored or fatigued. Let us hope this works.

Just moments ago Aaron left the surgery unit to arrive on the same floor, in the room across the hall from Jason. My husband stood in the hallway , so thrilled to see his big brother coming. And then Jason disappeared, ducking into his own room. What happened? I smiled at Aaron, who likely doesn’t remember this, and then I peeked into my husband’s bedroom.

I saw the tears splash on the faux wood floor before my eyes gazed into my husband’s. He was crying. His cheeks were red, his eyes were small and wet, and he put his face in his hands. Reaching for some tissues, I asked him what was wrong. He explained to me that he didn’t want to have to see his brother in that condition; on a bed, tired, eyes barely open, absent of expression. And all for him.

Whatever is happening with Aaron and Erica in their room is their own business. We have been reassured by doctors and nurses that he will be just fine. Other than that, we will wait until the facts emerge before we speculate about his condition and what he went through. I hope he has some funny stories and we hope to visit his room soon. What I can discuss is Aaron’s contribution and dedication to his brother. Jason had two perfect donor matches. When doctors said they were going to choose Aaron, he didn't say, “No.” He didn't ask them to choose the other donor instead of him (and they would have used the other donor if Aaron would have denied donating). Instead, he came to the hospital today knowing that he would undergo a surgical procedure to harvest his bone marrow for his brother. No doubt that his back will be sore for a while, and that he has undergone quite an experience, but now Jason and Aaron will have something to bond over for the rest of their lives. Aaron is a giver, just like Jason, and we are so thankful for his willingness to give what could possibly save my husband’s life.

If all goes well, Jason will be receiving a transplant very soon. And, if all goes well, Jason will share some similarities to his brother.

After a bone marrow transplant, the recipient won’t really know if it is working or not for three weeks. After that, it can still take months for it to grow and be stable. That’s a long time to be unsure of the success of the procedure. But if it works Jason could get Aaron’s allergies, and he most certainly will get the same blood type as his brother. Currently Jason is O-. In a few weeks or months Jason could be A-. If Jason’s donor would have been his sister, Jason’s blood type would have changed but so would his blood gender; his blood would have become female blood. No problems with that, just a neat fact.

So, today we celebrate Jason’s new birthday! Looking forward to the future!

On a less intense note, last night Jason’s upper lip starting swelling. They cannot narrow down the cause but it was pretty funny to see him bumble around here like Daffy Duck.

A Good Meeting - Dr. Peggy

*** This entry was written before Jason was admitted to the hospital for a transplant.

In order to get a transplant you must undergo a certain amount of pre-transplant testing to determine your health. A bone marrow biopsy, a breathing exam, and an arterial blood draw, as well as multiple blood tests are a few of the required procedures.

Although these tests are usually time-consuming and sometimes painful, this time the tests were wonderful.

When we walked into the testing room we felt so defeated.  Since death is listed as a possible side-effect, the idea of a bone marrow transplant is scary. 

The doctor began testing Jason and slowly the room became a little more comfortable as we opened up to her about our concerns, and she opened up about her family. In an hour or so we became fast friends with Dr. Peggy, a Christian, whose smile became impossible to resist.

Her sense of humor is witty and charming. She didn't tell us horror stories, or accuse us of being faithless. She didn't focus on the horrible current situation but rather talked about the positive results. She joked about her daughter's trip to Louisiana, and poked fun of her husband and son who recently lost their hunting bait to a bunch of rowdy squirrels. She made us laugh, not cry. And in those moments she honestly made us forget all of our problems. I hope to meet more people like this while we sit in the hospital room. What a difference a positive attitude, faith, and a friendly face can make!

We left that room, smiling, holding onto her business card and a piece of paper with her personal home phone number and email, as well as an invitation to attend church with her family on Sundays during my stay at the hospital. May God bless Dr. Peggy for turning a scary moment into an enjoyable one. 

Not Prepared

Almost every decision that I have made swiftly has been a bad one. Unfortunately, the hospital is not really giving us enough time to think about what we are about to do. Today is Monday. We found out today that the transplant process will begin on Thursday. 2 days (Tuesday and Wednesday). We will have two days to prepare. Let's hope that this time our swift thinking will be beneficial.

Two days to inform family and get them up to speed on the process and the minimal visitation. Two days to do all of the laundry, pack the bags, buy the supplies. Two days to get my job onto a laptop. Two days to cry, pray, cry again, pray again, and two days to enjoy our home before we say, "Goodbye," to it for 4-6 weeks minimum. Two days to answer all the texts, phone calls, clean the house, empty the fridge, do the taxes, pay the bills, finish all the jobs I had started...

And one of those days we will spend 10 hours either driving to/from the hospital or at appointments.

Jason and I have barely had a chance to discuss what we are about to do. We know we are both scared but hopeful. We both know we need boundaries at the hospital and are trying to plan this without being offensive. We know we are going to miss home, the foods we like, the alone time...

But this could be something great. This could change our future for the better. A year from now we could be home and well. Maybe Jason could be working again, or maybe we could go snowboarding again. Or perhaps we could go on our first real vacation in years. We have to be positive. Fear spreads quickly so please be positive for us. Please pray for us.

Thank you!