Thursday, January 28, 2016

Limb Salvage What?

I need to preface this by saying, I'm not a doctor.  Not even close.  In fact, all this medical and health stuff is so out of my wheel house.  Even when MacKale was diagnosed with hemophilia and Mike and I had to learn how to infuse him and mix factor, it has never been a 'comfortable' area for me.  I have always said, Mike is much better with that end of things.  So when I try to explain to you what it is exactly that MacKale will be having done, please understand . . . I'm not a doctor.


So here's what I know.  First thing Friday morning . .  . yes it's A GO . . . MacKale will have three  four surgeons working on him.  To start, he will have a pediatric surgeon put new port in his chest.  His last port lasted 7 years and was placed specifically for hemophilia infusions.  His new port with be a double lumen allowing for two IVs to be going at the same time.  This is more ideal for chemo treatment.

Once he has his port placed, his orthopedic oncology surgeon will take over and begin the process of removing the tumor in MacKale's leg along with portions of his tibia and fibula and margins of muscle and tissues around all the while navigating blood vessels and nerves that may or may not saved.  It is our prayer that this tumor, after testing, will come back with a high level of necrosis or 'tumor cell death.'  100% would be the goal.  Please keep this in your prayers as well.

Then once the tumor, bone and margins of muscle and tissue are removed, or orthopedic surgeon will begin the process of rebuilding MacKale's leg with a donor cadaver bone.  Because MacKale will lose much of his original leg 'parts'  . . . ligaments and tendons and such . . . his surgeon will then get help from a sports orthopedic surgeon in making sure all the extra cadaver pieces are attached correctly to assure that the leg is as functional as possible.

Once those pieces are all in place and secured, a plastic surgeon will come and help take muscle from another part of MacKale's leg to replace and fill the portion removed as part of the tumor margins.   The last part will be the stitching him all up to make the scar look 'pretty.'

All in all it will be approximately a 12 hour surgery.  MacKale was most concerned that his surgeon would get bathroom and snack breaks, but he has assured MacKale that he will get a break here and there but won't leave him alone.

Of course, any surgery is scary, no matter how minor.  This is a major one.  It's major, it's on a child and it's on a child with cancer AND a bleed disorder.  To say that we are scared is an understatement.  Although we have great faith in our surgeons and an even greater faith that God is holding MacKale in his hands, our faith is not perfect . . . we are weak and we are afraid . . . So if you have a spare moment on Friday  . . .please pray for MacKale.  Pray for God to guide his surgeons' hands.  Pray that the chemo has 'killed' his tumor and that his little body can be rid of cancer.  Pray for MacKale to heal without complications or infection.  Pray that his sweet spirit will withstand the pain and discomfort from surgery and sustain him while he goes through months of physical therapy and healing.  And then if you still have time . . . play for us.  Pray for MacKale's little brothers who are also afraid, and missing him  and missing having our family together.   Pray for Mike and I.  Pray that we can put fear aside knowing that God has this . . . that some how, some way good will come from all of this.   Pray that we will find peace and our family will be whole again.  And when you've done all that praying . . . spread the word so others will keep us in their prayers too.

Thank you for all your continued support and prayers.  We will be updating MacKale's progress throughout surgery on his Facebook page so if you're interested, follow us there by clicking HERE.

Also, I finally got around to setting up an instagram account for MacKale.  He's been wanting to share some pictures that way.  If you'd like to follow it's HERE.


96 comments:

  1. We will be praying...we ARE praying. Everyday. For MacKale...for your family...for comfort, complete & total healing, and a peace that surpasses all understanding. God's got this. MacKale is not fighting alone. "The Lord will fight for you. You need only be still." - Exodus 14:14
    Big prayers!!!!!

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    1. Thank you Cara! You are always a great source of inspiration.
      Marsha

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  2. beyond the 4 Docs you will have anesthesia nurses, surgical nurses and techs. lab personnel, oncology Docs and nurses, pathology doctors and techs, equipment operators and service personnel, ..... Talk about Team MacKale!
    It's OK to be nervous, Gabby says its like Disney on Ice, you don't know whats going to happen during the first part so you sit on daddy's lap and be a little scared but when the second part comes it's all sing along with the music and dance and clap and enjoy it because you know it will be all right.

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    1. You are right. It was a ginormous team.
      Love ya.
      Marsha

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  3. I laugh, I cry, I pray and pray more. Your family is like our family, we are tied together forever and when you hurt we hurt with you. You have the sweetest boy and the toughest one too (I believe he got the best of both of you:) Even though we are not there physically, I can honestly say an hour, minute won't go by when we are not thinking of you, praying with you. God is good! Our faith is here to lift you up where you feel weak. {{{{{Hugs & kisses}}}} The Bells

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  4. Fervent prayers for all of you! Crying while reading this. Mackale has been through so much. What an amazing young man.... And your whole family.❤️❤️❤️🙏🙏🙏

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    1. Thanks PK. We so appreciate all and any prayers.
      M

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  5. Praying deeply! I know God hears you and heals you. Tenley and I are sitting here right now painting pictures for Mackale. We will be with you in spirit all day and night. ❤️❤️❤️❤️

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    1. I know you are and love that I can count on you for prayers.
      M

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  6. You are in my prayers. My son had a medical crisis and he had two spine surgeries at DeVos.You can not ask for a better group of surgeons and professionals than they have there at DeVos. I am praying for McKale, and the whole family, and for the surgeons too. <3

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    1. Yes, DeVos is the best. We are so incredibly blessed by our medical staff/team.
      M

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  7. Thank you God in Jesus name for allowing us to be healed by your stripes! You took on all of this for us!!! Thank you in advance for the healing that will be and is taking place within Mackale! Thank you for blessing me to see this healing as it takes place! I pray for strength for this family and the doctors and nurses providing care for Mackale!!!! Thanks for your word
    “That is what the Scriptures mean when they say, “No eye has seen, no ear has heard, and no mind has imagined what God has prepared for those who love him.” But it was to us that God revealed these things by his Spirit. For his Spirit searches out everything and shows us God’s deep secrets.”
    ‭‭1 Corinthians‬ ‭2:9-10‬ ‭NLT‬‬

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  8. Praying for your whole family. Big Hugs.

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  9. Sending more prayers your way for Mackale, the medical team, and for mom and dad to have peace replace the fear. Thinking of you always.

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  10. I will continue to be lifting up MacKale and your family in prayer. Thank you for the update.

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  11. Lifting your family up in prayer.

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  12. My family will be praying for MacKale, the surgeons, doctors, nurses...and your family all day. All of the kids are putting them on their class pray lists in the morning and the classes will pray too. My school and church staff will be praying as well. We know God will hear our prayers! And there will be A LOT of them! Sending our love... The Ehle Family

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    1. I love your school . . . thank you for including us in your prayers.
      M

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  13. Mike and Marsha I'm totally praying that they surgery will be a success and that McKale will have a great recovery. I can't even imagine what you are going through and it's understandable that you are scared, it's your child. God is a great God and you've got so much faith and so does McKale. He's such a brave little boy and I admire him. He's such an inspiration for all of us. I have been constantly praying for your family and McKale and will continue those prayers. God bless you and your family Dianna Haines

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    1. Thank you thank you thank you . . . your prayers mean the world to us.
      M

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  14. Praying God will instruct and guide the surgeons every step of the way. Praying for good report and diagnosis for Mackale. Finally praying for you, his family, that God would wrap his arms around you, strengthen and comfort you!

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    1. Thank you Barbara. Your prayers mean the world to us.
      M

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  15. Praying for all the stars to be in alignment! Remember, you are not alone. We will all be thinking about you!

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  16. Wow, I AM in the medical field, the oncology field even, and didn't even realize that there were sub-specialties such as orthopedic oncologist surgeon or sports orthopedic surgeon. Sounds like you are definitely in the right hands! That being said, I can only imagine your worry about such a lengthy procedure.

    As always, keeping you very close in thought, and will be following along closely tomorrow. I am so proud of our community for coming together as we have for your amazing guy - and I know the prayers of so many will help.

    Take care,
    Kathi

    (PS - I did chuckle a little when I saw the picture in the paper this morning. It's a wonderful article, but I was wondering about MacKale's reaction to the Iowa gear in the picture with no explanation as to why he's wearing it! Every other picture of him he's decked out in State gear - I could just hear him say "Really? They picked THAT picture?"... ;-)

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    1. I didn't show it to him yet. We didn't want him to see it before surgery. But yes....of all the pictures to pick???? We do however appreciate all the support from the local news. We will show him afterwards.

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  18. Prayers to you, your family, and Surgery Team McKale!

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  19. Prayers for Mak tomorrow and for sound mind for mom and dad!! Prayers prayers prayers

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    1. Thank you Holly. Love those Spencer kiddos.
      M

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  20. Praying for peace for you all while you anxiously await word, prayers for the doctors so that their hands may be guided by His hands, prayers for strength for MacKale, and prayers for healing, once all is done.

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  21. Will continue to pray for you and MacKale.

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    1. Thank you . . . prayers are so important to us.
      M

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  22. I will be praying throughout the day for this marathon surgery to go well and for your family to weather this storm. (((Hugs)) and prayers from Oklahoma!

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    1. Thanks for always thinking of us Jennifer.
      Marsha

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  23. I am praying for MacKale and your family. Hugs!!

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    1. Thanks so much Erica. It means so much to have my blogging friends behind us and praying.
      M

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  24. You're all in our thoughts and prayers. We read this as a family tonight and not a dry eye after. Marsha you have a gift of writing that captures your love and devotion to your family and inspires us all to remember the priorities in life. We will continue to pray for MacKale's strength and healing, and for the grace of God to comfort you, Mike and MacKale's brothers tomorrow and during his recovery. ��

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    1. We certainly appreciate all the prayers Laura. Those LaMondes are a good bunch. So glad you're on our team.
      M

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  25. I am a friend of Michelle Oakes, she asked me to pray and MacKale is on my rosary list. I will also tell all my prayer warriors to pray. God bless you. Mary hold MacKale in your loving arms like you did your son, Jesus.

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    1. Thank you for taking on MacKale's cause and including him in your prayers.
      Marsha

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  26. The Erway Prayer Warriors are in full force. God is on your side McGuire Family.

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  27. Marsha. I'm in SC this weekend and sending TONS of prayers from the road. I'm praying for all of those concerns and realities that you've outlined. Thank you for taking the time to explain things to our best understanding. I can't even imagine the emotions swelling in your heart. Strength and courage. Strength and courage. Strength and courage. I always return to the little Sunday school song, "Have no fear little flock, have no fear little flock." Sending you every possible encouragement. I will check FB throughout the day. Praying for the medical team, that they are utterly brilliant in every possible way.

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  28. So sorry that you are all having to go through this. I can't imagine! Sending thoughts and prayers to all of you!

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  29. Love, prayers, strength, courage peace and more prayers are sent to you from the Johnson's. Psalm 61:2 when my heart is overwhelmed lead me to the rock that is higher than I. Sending all our love:)

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  30. Praying hard for you all. Precious, precious boy!

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    1. Those prayers are precious to us. Thank you
      M

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  31. I will be praying for your family. God Bless you!

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  32. Prayers said and will continue to be said!

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  33. Sending lots of love and prayers to you all!!

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  34. Praying for you and your family. Hugs!!!

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  35. Thoughts and prayers will be with all of you tomorrow. <3

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    1. Thank you thank you thank you Cyndie. We need those prayers.
      M

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  36. My thoughts and prayers will be with you and your family all day. Thank you for explaining everything, I had no idea. My oldest son has hemophilia and has had 5 surgeries. Doctors really have that part under control these days and he healed quickly after his last surgery with infusions at home for 2 weeks. He is 32 now. I know how hard it is to watch your previous son endure all of this. I can't wait to hear that he is healthy, home, and healing. God bless your family.

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    1. Oh my goodness Palma . . . I didn't realize we had this in common. Hemophilia has changed our life for the better in so many ways, but when MacKale was diagnosed, I was devastated. Now it is the least of my worries. Yes. They have really done wonderful things with treatment and we have always said we were blessed to have MacKale when we did and not in the mid 80s when we graduated from high school. He has benefited from hemophila patients who came before him and paid a very high price. Please stay in touch and thank you for reaching out.
      M

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  37. Stumbled across this early this morning right before I was sitting down for prayer. Lifting you all up this morning to our Lord and Savior!

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    1. So glad we caught your eye and that you were able to include us in your prayers.
      M

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  38. We woke up this morning, put on our team MacKale shirts and prayed for you all.

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    1. You are awesome. Keep praying please. We definitely need it.
      M

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  39. We are friends with the Cinco family and Kate and my twins are in class together. We have been praying for your family. Continued prayers.

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    1. Thank you so much for including us in your prayers. The Cincos are our dear friends and have been such life savers for us during this journey.
      Marsha

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  40. I teach outside of a National Park and have the most beautiful drive to school. I watch the sun come up, the light painting the sky a different color every morning. It's my quiet time to be grateful and to send thoughts to those I love. This morning, and all day, I will send prayers to you and your Mackale. It sounds like he's in very good hands! So much love.

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    1. Thank you so much. What a wonderful way to get to work and be able to pray.
      Marsha

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  41. Praying for peace for you and for the best outcome! Hugs!
    Heidi Butkus

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  42. Thinking of you . . . sending love and healing thoughts.

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  43. I'll be joining many others in praying for MacKale, family, and doctors throughout this day. God is our rock and fortress--He'll strengthen ALL of you.

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  45. We continue to pray for all of you, as well as the docs and nurses involved. Seeking intercessions from my Dad and Sandy as well. You are in good hands. Helen and James

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