Thankful

 

These roses took my breath away this week.  I feel silly putting up photos when I am friends with so many amazing photographers but mostly, I want to remember what I have seen.  Aren’t they amazing?

What I am thankful for this week…

Flowers everywhere, peonies, roses, irises, centranthus, yarrow

Thomas’ weight gain

Treehouse being finished

Titus sleeping through the night

Lark Rise To Candleford – Thanks, Amy for the movie suggestion

eclectic music choices from Thomas

Monday holiday – time to just be

Our church family – worship, support, and fellowship

Thomas’ new drug really didn’t help.  More throwing-up and nausea this weekend.  He is much better today. Yeah! Have a lovely Memorial day with your family and friends.

 

Celebration!

He did it!!  Thomas has broken 100 pounds!  He weighed in at 46.5 kilos which is 102.3 pounds to be exact.  Oh yeah!  We are thrilled and so is his doctor.  We are hoping he continues to gain weight.  As his doctor said and my sister has been saying, the more weight, the easier for his body to bear the chemo and recover from his treatments.  He is planning to travel to the wedding without his tube and is hoping to maintain his weight while we are gone.

We celebrated with rootbeer floats.  Thomas chose an Izze instead; he hasn’t had a soda since this began.  We all had one in his honor.  Catherine, a friend from church, made us dinner and she stayed for our celebration.  A huge weight feels like it has rolled off my back.  This weight thing has been STRESSFUL.  We are looking forward to more weight and easier treatments.  Thomas got a new drug today that his doctor is excited about.  Hopefully it will be helpful in his treatment.

Enjoy the rootbeer floats!  We did!

Getting ready

We are gearing up for chemo once again.  What a nice break Thomas had!  I think you all better get ready to celebrate; I think we are going to have good news tomorrow.

Auditions went well.  All the kids were pleased with their performances and they all said, “I was so nervous.”  I guess Thomas didn’t.  One plus of cancer is not too many things phase him…

We are possibly going to try a new anti-nausea med tomorrow.  Thomas was going to join a study with the drug but the nurse felt it would be too risky for him with all the trouble he has had controlling the nausea.  The drug is available at Children’s so it might be a great alternative to scopolamine.

Thomas got his blood drawn as usual on Wednesday at our local hospital.  A woman came up to us as we were leaving and introduced herself.  She is a friend of a friend and she has followed our story and prayed for Thomas.  Meetings like these feed my soul.  How profound to know the love of Christ reaches beyond my circle of friends and family, to know people we haven’t met continue to pray and follow.  Thank you.  I still wake up and can’t believe we are in the sixteenth week of chemotherapy.  But then, in the midst of the realization that this is my life, our life, I also remember all the love given to us by you and by our Father.  Blessing and pain all mixed together…  Thank you for continuing to hold Thomas and all of us in your thoughts and prayers.

 

Twelve years

We had a lovely day, full of good food – german pancake, salami wraps and fried chicken (Sophia’s birthday choices), friends, cleaning and fun.  Our lovely friends thought it would be fun to come and help me clean my house.  Go figure.  It was fun since they were here and the results are sure a blessing.  I had taken to standing in my closet for long periods of time because until today, it was the only clean and organized part of my house (thank you, Sarah – such a gift).  Not anymore, thanks to the Morkunases.

Sophia felt celebrated.  She is a servant who thinks of others first.  She has internalized so much of what Thomas has gone through.  It was nice to have a day to celebrate who she is and what she brings to each of our lives.  Last night I was afraid she might be crying today; she really hates to decide things.  It is something she has to work at so choosing three meals was rather stressful for her.  She asked Thomas what he wanted or what I wanted to fix but we wouldn’t let her get away with it.  She had to choose and she finally did after crying about it.  Wow.  The parenting conundrums we are faced with are often not ones we would imagine.  ”I am not picking your birthday meal for you.  You have to choose!”  Not a problem I envisioned…  But it all worked out and we all enjoyed every meal, especially the fried chicken  We enjoyed our meal with Sophia’s godparents, who spoke beautiful words of encouragement to her, and finished with pound cake for dessert.  Yum!

Tomorrow the kids audition for their youth orchestra which they love.  Thomas’ neuropathy has grown in its severity.  We have almost daily tears about the physical limitations he is experiencing.  I am praying for his audition, that he will be able to hold the bow and feel confident in what he plays.  The orchestra conductor obviously is aware of what he has gone through and she wanted him to audition anyway.  I am just praying for his benefit that it goes well.  Not being able to control your own body is not a good feeling and, I think, especially hard for a teenage boy to bear.  Our verse for him has been, “My grace is sufficient for you, for my power is made perfect in weakness.”    II Corinithians 2:9.  His weakness is more apparent, especially as he is feeling better, and more troubling for him.  Another loss and another place to see how God will use it in his life.  Praying, always praying….

 Sorry for the blurry pictures!  Doesn’t that pound cake look good?  Thomas had to eat some

Good things and save the date

I am breathing a deep sigh of relief; Thomas has been off the scopolamine patch for two days now and no vomiting.  I am grateful beyond words.  A couple of times he thought he was going to throw-up but he managed not to let it out.  He is developing quite a skill for holding it down.  He is gaining weight for sure and for that I am grateful as well.  It has felt like boot camp here at meal times and we are breathing a little easier seeing his neck bones a little less and watching the color creep back into his cheeks.  I feel like dancing a jig since his nausea has been controlled without the scopolamine.  Hooray!  Back to chemo on Friday but still a few more days of rest before we start all over again.

Tomorrow is Sophia’s 12th birthday.  We are looking forward to celebrating her and all of her 12 years.  She smiled the minute she was born, not with her mouth but with her eyes and she has been smiling ever since.  Her tender heart and ability to connect with people are gifts I know the Lord will use as she continues to grow.  She and Eva have been invaluable help since this journey began.  I would really be a mess without both of them.  Sophia’s spirit and laughter brighten all of our days.

In the spirit of celebration, we would like to invite all of you to our home for a dance to rejoice in the goodness of God and to celebrate Thomas’ life and to be with all of you, our dear friends and family who have supported us through this time.  Even if we don’t know you, please come.  We want to know you!  We will have a caller who will lead us in  dances, square dances, reels and other traditional dances.  If you don’t know how to dance, don’t worry!  It is easy to follow and everyone, from the little to the old, can do it.  We are going to do it Sunday, June 17th from 6-9 at our home.  It is Father’s day but dads like to dance, right?  We would love to have you.  Put it on your calendars.  This will be right after Thomas’ 5 day chemo so I am not guaranteeing that my house will be clean but I don’t care if you don’t care.

Triumph!

Thomas played in his teacher’s studio recital today; he memorized one new solo piece this semester.  It was a triumph and it would have made me cry except that I was accompanying him so I had to hold it together.  His teacher and grandmothers cried in my place.  His teacher dedicated the last piece the entire group played to him.  As she spoke he looked at me with tears in his eyes.  I had tears in my eyes and Mark said he couldn’t stop his own tears.  I am grateful for music in Thomas’ life, for the outlet it is, the motivator and encourager it is in this journey, for his friends and teacher and for our sharing it together.  Such a blessing.

Random observations

If you want your baby to stop cleaning the floor with his tummy, remove his shirt and he will crawl properly on knees and hands.

If you want your son to eat his food in a timely manner, set a clock and charge money if the food isn’t eaten.

The aforesaid baby will undoubtedly find every scrap of food on the floor and try to eat it when no one is looking.

Sleeping for more than two hours at a time is helpful for all aspects of life, especially staying awake while driving.

Laundry never ends.

Trying to help someone gain weight is exhausting.

The doctor upped Thomas’ dose of marinol.  We got larger bags for his nighttime feeds.  All of this, we hope, will help him gain weight.  This week I have been reading in the Psalms, calling the Israelites to remember the Lord’s deeds, recalling how He acted on their behalf.  I am remembering all of the ways He has acted on our behalf through all of this.  When the way seems dim, I hold on to hope and that hope is built on His trustworthiness.

When through fiery trials thy pathway shall lie, My grace all sufficient shall be thy supply.  The flames shall not touch thee, I only design, thy dross to consume and thy gold to refine.

Wednesday check-up

Thomas’ blood counts are holding steady.  His reds have gone up more!  Good news all the way around.  We are still waiting for those rootbeer floats; his weight continues to be an issue.  We figured out today that we have had the wrong size bag for his feeds this entire time.  We are getting bigger bags that should hold more food for his feeding tube.  He would really like to get rid of the tube; his goal was to be over 100 pounds for his cousin Joe’s wedding in a few weeks.  I continue to pump him full of calories any way I can.  I still wish there was a way to donate unwanted weight from one person to another.  Wouldn’t that be swell?

Stronger

This video made me cry.  The kids and I watched it least 5 times today alone.  I hope you enjoy it.  I think Thomas was happy to see other kids with no hair and feeding tubes.  Tomorrow blood counts are checked.  We will see how he is doing.

Thanks for sending this my way, Susi

Family pictures

Family pictures. Don’t idyllic scenes flash in front of your eyes? Everybody smiling at the camera, dressed in their best, hair smooth and fixed, eyes bright and cheery. Today we had the opportunity to have our family picture taken at the hospital. Photographers donate their time to cancer patients and their families to record their journey. We started getting prepared last night. What was everyone going to wear? How would we fix their hair? Were the clothes washed? Did we have shoes for everyone? I sent my friend an email asking what we should wear; I was wanting to avoid the white t-shirt and jeans look. She said if everyone was clothed in clean clothes that should be triumph enough for me. I should have taken her advice and settled for that. Instead I spent time making sure all the colors looked good together, even driving to Longmont to get a shirt for Thomas from my mom’s house, washing all the clothes, convincing each child their outfit was cute and good.

I turned into mommy-dearest this morning. Isn’t it ironic after celebrating Mother’s day yesterday and seeing that we were going to take a picture commemorating the love in our family? Nothing like a little time pressure to turn me into a raving lunatic. Wow. Lots of apologizing for me to do. At one point, after freaking out at Mercedes for losing her headband, Thomas turned to me and remarked, “I don’t think this is really worth it.” Hmm. We all got into the car, after nixing the red running shoes Thomas was wearing, picked Mark up and headed to the hospital. I had already bribed Theo with the promise of a treat if he was good and smiled at the camera. He was well prepped. We sat down for the pictures and I found out that all the shots are in black and white. All that time and worry about the clothes and it didn’t even matter. Isn’t that the way it is? Getting all worked up about something that doesn’t even matter in the end…

The actual picture-taking was a breeze compared to what we had been through that morning. Everyone smiled, even Theo, at the photographer and I think the pictures will turn out well. I might even send out Christmas cards this year with the picture and now you can all know the real story behind the smiling, sweet picture. A lot of yelling went into that picture Since we did not get any shots in color I am putting these pictures up of everyone and their clothes. Please appreciate the color scheme for me? One picture has the valet attendant in it. He wanted to be in our picture and we thought he fit in just fine.  I am not sure why Thomas couldn’t keep his eyes open but at least the other pictures were taken inside!