Wiersma Family Blog

A glimpse into our lives as a family with micro-preemies. Our twins boys (Lovingly referred to as our Miracle Men) were born almost 16 weeks early.

Our journey continues when our son Max was diagnosed with cancer at the age of 3. This is his story....

Wednesday, April 15, 2009

Where to start

I will apologize before I even begin this post because I am sure it will be disjointed and confusing because my thoughts are just all over the place.

First, the boys. Max is recovering from his surgery still. We were hoping for amazing results after he had to go through all of that crap with the surgery yesterday, but it almost feels like nothing has changed since the initial improvement in his blood pressure. I was at the hospital late tonight praying and saying good night to the boys, and the nurse said that a chest x-ray taken last night of Max showed that his lungs were getting worse, meaning more "cloudy areas." They did reduce his vent settings by quite a bit yesterday hoping he could make up the difference on his own. This did not work well. His oxygen needs climbed to almost 100% and they ended up turning his pressures back up on the jet vent. He is currently in the 60-70% range on his oxygen. Max does have a sizable leak in his ET tube, meaning that the diameter of the tube is more narrow than his trachea, and a good bit of the air/oxygen they are giving him is escaping back up his throat. This could be a reason for his higher oxygen needs, but they cannot be sure. We pray that the antibiotics continue to break down the infection in his lungs and that his need for the ventilator starts to diminish. Wes is doing okay. He is still on the jet vent with very similar circumstances to his brother. He also has an infection in his lungs, but the nurse was not sure if it was the same infection Max has or not, but they are treating it with the same antibiotic, which sounds like "oxycilin", but I am sure I am saying that wrong. Wes also has a big leak in his ET tube. They have not tried to intubate them with a larger tube because they do not want to stretch or permanently paralyze their vocal chords, so they deal with the leaks and try and find a position that works well for the boys. Wes' oxygen needs have been in the 30-40% range. Wes has been tolerating his feeding schedule well, and is up to 9ml of breast milk every 3-hours with a packet of Human Milk Fortifier (HMF) to add a few more calories. They have begun to ween him off the TPN fluid, which is a conglomeration of about 75 nutrients that are given through his IV. These are essential nutrients, but can be harmful to the liver, so they like to get them off this as soon as they are getting enough breast milk.

Please pray with us that the boys can break out of this holding pattern. We do not know what to expect day to day, but it seems like the boys have taken a few steps back and just stayed there. Hearing that Max's chest x-ray looks worse after the surgery and a couple days on the antibiotics is just heartbreaking for me. He was going to have another x-ray a few minutes after I left the hospital (but the results trail the x-ray by about 10-12 hours it seems), so we are praying that the doctors will be blown away by the positive change.

One thing that I have not discussed on this blog yet is Kate's Mom. Many of you probably know that Mom has cancer. She was diagnosed on November 28, 2003 after she went in to have her gall bladder removed and the doctors could visibly see the cancer on her ovaries. After a number of tests and months of unknowns, it was determined that she had a very rare form of cancer called neuroendocrine cancer. Due to the rarity of the cancer, she was treated by a specialist at the M.D. Anderson cancer facility in Houston, TX. Her and Dad made countless trips down there for tests and consultations with the doctors. Some trips returned good news, others did not. To make a long story short, it looked as if the chemos and other various drugs were not keeping the cancer cells at bay, so she was turned over to the research department at M.D. Anderson and participated in an experimental drug trial. She was the only person in the country with her type of cancer on this particular experimental, non-FDA approved drug. After about 6-months, the decision was made to stop the trial due to tumor growth. The more painful decision was also made that it was time for Mom to come home (she stayed in Texas during this 6-month period), which meant that her treatment had shifted from "let's kill this cancer" to "let's keep Mom comfortable." She came home in early March. She has since started to decline quite quickly, and even more so in the last couple of days. We had a meeting with her Hospice doctor this evening and he said that based on his information and what he was hearing from the family that he would guess that Mom is in her last week of life. I don't even know what to type. In one breath I want to be furious at God, and in the next I cannot help but see how He has been in control of this whole situation. Mom was at our wedding almost 5-years ago, she had her first grandson, Luke, born 10/11/06, Joe and Lisa (Kate's sister) were married in December 2007, and our sons were born on 03/27/09. And that does not even begin to paint the picture of the great times we have had as a family over the last 5+ years. Mom's initial diagnosis was 3-6 months in 2003. The Hospice doctor tonight said that he would have given her 18-24 months based on her initial CAT scans in 2003. As I look back on even the last 45-days, God's hand is so evident. Mom came home about 5-days before Kate went into the hospital on March 10. She was able to visit Kate a number of times, and she has been able to meet, spend time with, and touch Max and Wes. What a blessing that Mom got to meet our sons, but also that Kate is no longer on bed rest, and she can go and spend time with her mom and say all the things she wants to say. Again, I do not know what to type. Please pray for Kate. She is struggling with being a new mom to Max and Wes and the thought of her mom not being around to help. I know Kate will be an amazing mother, because Myra is an amazing mom. Please also pray for Kate's sister Becky who is pregnant with her second baby, and is due in July, just a few days before Max and Wes' original due date. Kate's little sister Lisa lives in Florida and is coming home this weekend, so please pray for traveling mercies and God's timing. Also, keep Kate's dad in your prayers. He has been through so much with Mom, has seen her poked and prodded for more than 5 years, made 20-30 trips to Texas with her, driving, flying, whatever worked. The graciousness with which Mom and Dad have handled this disease has been an inspiration to me. How can someone faced with the worst of the worst circumstances still have joy? Still praise God? I pray that I can take what I have learned from their example and apply it to my journey with Max and Wes.


  1. Oh Kate and Mark, we are praying so hard right now! As I read this I thought about all the good times on Greenwood and how great your mom and family are. We are praying for you both, Becky, Lisa, your mom and dad.
    ~Bethany Mulder

  2. "God's hand is so evident." is how you are handling everything that is going on...I am so blessed by how you are able to share what is going on with your family, the ups and downs and still end with "God's hand is so evident."
    I am rejoicing with you and your family with how your mom has been able to be here for the big events and the little day to day moments. I am sure there are so many special memories.
    I will continue to pray for each one of you, one of my favorite verses is Proverbs 3:5-6 trust in the Lord with all your heart and lean not unto your own understanding, but in all your ways acknowledge Him and He shall direct your paths." He is not asking us to understand why things happen the way they do... He is asking us to Trust Him. He will provide everything that is needed... He is watching over your family...He loves each one of you.

  3. Mark & Kate... We are lifting you guys up to the Father, asking for His Almighty hand to carry you right now. We know that he promises not to give us more than we can handle (with His help), but this just seems like too much. I'm so sorry! Please know that you're not alone. And we know that He WILL carry you through this storm. He is our Living Savior, our Resurrected Lord... We praise Him that you have placed all your hope and trust in Him alone. He will not let you down!
    "You who fear the LORD, praise him! All you descendants of Jacob, honor him! Revere him, all you descendants of Israel! For he has not despised or disdained the suffering of the afflicted one; he has not hidden his face from him but has listened to his cry for help." Psalm 22:23-24
    We praise You, God, for the strenth You have given Mark & Kate to praise You, even in the midst of this big storm! We know that You love Mark, Kate, Max, Wes, and Kate's parents so much and You are holding them right now in your Almighty, strong, faithful hands. We know that You will never let them out of your precious and strong grip. We lift each of them up to You, Father, and ask your miracles of healing, grace, strength, and peace to shower on each one of them today. We pray with expectation and the hope we have in our Risen Savior, that Your perfect will be done in each of their lives. We're desperate, Lord, and cry out to You for help! And may You be glorified, our Healer God, in this situation. Amen
    With much love, Brent and Amy Sluiter

  4. I can't say it any better than Amy. Amen.


  5. And again, I say Amen. Bob, Allie and family. "The Lord is close to the brokenhearted and saves those who are crushed in spirit." Ps. 34:18

  6. Mark and Kate,

    We are praying for you both, the boys, and your extended families. Wow, so much going on. We will pray for peace and healing. We echo Amy's prayer!

    the Huizengas

  7. Dear Kate and Mark,
    Praying fervently for the boys, for you, for Myra and Rick and Family. God is Big and we call on His mighty power to enfold you all.
    Psalm 46. God is our Refuge & strength...

  8. I don't quite know what to say, because everything you are going through right now seems unimaginable to me, but I am so grateful that you know the Lord and are feeling Him carry you through this! I don't understand His timing... why He's allowing all of this to happen all at the same time... but one day His perfect will and plan will be made known.

    God bless all of you! I am praying so hard for you guys! I pray that God will give Myra comfort and peace as she lives out the remaining few days of her life here on earth... but also joy in knowing that she will be entering into eternal life with Christ in heaven! To know that this is not goodbye forever is amazing! I also pray for God to continue to carry your boys through this healing process and that He'll get them through this without any serious complications. And I'm praying for everyone... family, extended family, friends... who know you and love you and are in this emotional rollercoaster together with you. May you continue to cling to God's promises as you go through this. I am so proud of your strong faith and the example you are living for the world! You're all amazing! God's light is definitely shining through you guys.

  9. I cant imagine what you guys are going through but am blown away by your amazing faith, and that you are able to see God's hand through everything. He is a faithful and amazing God. Thank you for sharing and allowing us as fellow believers to pray with you for your boys, your mom, and the rest of your family. Praying!

  10. i have no words... please know that i am praying for all of you, kate, mark, the twins, your entire families. i pray that you will know the comfort that only God can bring. lots of prayers

  11. praying for you and your family!

  12. Mark and Kate,
    What to even say - words cannot express how our hearts just hurt for you and your family right now as you prepare to say good-bye to Kate's mom. You have been through so much and yet God has given you a perspective not many would have the strength to have. We know He is a magnificant, all-knowing, all-powerful God - and we just pray and cling to His promises for you and for strength to get through each day as it comes. We will continue to lift you all up in prayer as this week unfolds and will be praying that God's mercies rain down on Max and Wes and perform the miracles they need to get healthier each day.

    Praying hard for you...
    Nick and Sarah

  13. Dear Mark and Kate....I just don't know what to say except that we continue to keep you in our prayers! I can't imagine going thru all that you are right now, except with the help of our Lord and Risen Savior...We are praying for you constantly and thinking of you all the time. We will keep Kate and her family in our prayers also during this difficult time.

    Dave and Joy Koning

  14. Hi Mark and Kate,
    We have been out of town and just now read through some of the updates - thank-you for keeping us in the loop!!
    Our hearts just break for you - We continue to keep Max and Wes in prayer for growth, healing, strength - lung capacity!! We keep both of you in prayers for peace, patience and good rest. We pray for all of the Blauwkamps at this very fragile time! God has been so good as evidenced by your testimony in your postings! We now continue to ask him for the miracle of life!
    Love to you both and to your fam!
    Steve and Kerry