Monday, September 5, 2011

~ The Words You Think You Will Never Hear ~

"Your son has a massive liver tumor"


On Thursday, August 25, our older boys were hitting golf balls in the field and our youngest son, Jairden, was shagging balls for them. J was accidentally hit in the stomach with a club. He seemed fine at first but with in a matter of minutes he was throwing up, the color was gone from his face, his lips were white, and his eyes were starting to flutter.

We rushed him to the local ER where they did a CT scan and saw bleeding in his abdomen. We were brought by life flight to Children's Hospital in Minneapolis and had two more CTs early Friday morning. The results: there was a bleed but the bleeding was from the softball size tumor hanging off of his liver. His kidneys had been pushed so that they were smashed up against his spine, his bladder and spleen were smashed together on one side and his liver was pushed to the other side and twisted at a funny angle. The rest of his abdominal cavity was filled with this tumor.

We had to wait until Tuesday to do surgery to remove the tumor. It was a long wait for a little boy that was used to being outside and playing all of the time. In order to keep tabs on the bleeding he had to have his hematocit levels checked every twelve hours and his potassium/chloride checked every six. As any two year old, he didn't like being poked but sat perfectly still when they were doing it. When they checked his vitals he would lift his arm for the thermometer and hold out his leg for the blood pressure cuff. He wasn't sedated for any of his CT scans either. He had an IV the whole time but still gave us plenty of time to make it to the bathroom. The nurses were all very impressed at his helpfulness and the fact that he was potty trained.

The surgery on Tuesday couldn't have gone any smoother, they were able to get all of the tumor and clean out all the bad blood. Now we had to wait for pathology to come back. We knew before surgery that his tumor was most likely a hepatoblastoma, but need the tests to affirm it.

Wednesday was a very rough day. After surgery they left him of a respirator and sedated so that he could have some time to heal. He did great with waking up and getting the tube out but was very anxious the rest of the day. He had a feeding tube in his nose which was driving him absolutely bonkers. (Your stomach doesn't stop producing acid but the narcotics stop you bowels from working so the acid pools in your stomach. They had wanted to give him zantac but I wasn't okay with changing the pH and function of his stomach acid in any way. The only other option, a medication to simply coated his stomach, had to be delivered via feeding tube.)

We had a hard time getting on top of his pain. They finally increased his baseline levels and that helped a ton. They had talked about giving him an anti anxiety med but I wasn't for that either. He tried drinking some water and threw all of that back up along with all the crap that he was trying to cough up from his lungs. Getting him to cough was very hard too! Try talking a toddler with a four inch incision across his belly into coughing to bring up the mucus in his lungs.

He didn't sleep for about 36 hours after surgery even after we calmed his down. That night I slept with him and had pretty much pasted out from exhaustion. While I was sleeping the night nurse gave him he anti anxiety meds without my permission, I was NOT happy and it didn't help at all.

He has the most amazing massage therapists, Candace and Karen. One of them came everyday we stayed in the PICU and did cranial work, healing touch, and some massage. Late Thursday afternoon, Karen came down and told him a story and did healing touch, smoothing out the magnetic field around him. His dad read him a story and he fell asleep for the first time since his respirator tube was taking out on Wednesday morning. When he woke up, I smiled at him and said "Hey baby" and he smiled back at me with the most beautiful smile ever. It took everything I had not to cry, I didn't want him to think I was upset. He hadn't really smiled since the accident, he was just to confused and perplexed at what was going on.

He continued to improve and late Friday afternoon we were moved out of the PICU up to 7th floor. Sunday night we were able to come home. Our trip home is going to be rather short lived. We have to go back on Thursday to figure out what our exact chemo plan is and to start chemo. We will be there at least two day and then if we are okay we can go home.

21 comments:

  1. ...so lifting Jairden, you, and the family up in prayer. Jesus....

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  2. Praying for Jairden and your family Megan!

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  3. You and your family are in our prayers. Poor little mite! And what a trooper!

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  4. Sorry to hear about the tumor Megan. Hopefully it's a blessing in disguise that it was noticed now rather than later.

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  5. Keeping you all in my thoughts. Sending you love, light and healing from the UK xx

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  6. Sending you and your family loving healing energy, wishing you a prompt recovery, Gabriel

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  7. You poor mama. The worst situation all parents dread. I will be thinking of you all.

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  8. Our prayers are with you and your family.

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  9. Your family is in our prayers. We hope for a full recovery and look forward to hearing more of your journey. My husband has gone through chemo and a bone marrow transplant this year while we raised our young son and I am now pregnant again. It is definitely a huge challenge that you are facing but you will make it through. Please let me know if I can be of support.

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  10. Megan,

    The kids and I have been praying for Jairden (and the rest of you) every day. You have been very much on our minds and hearts. If there is anything else I can do, please let me know.

    Kelsi

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  11. This may help you and your son
    http://www.youtube.com/watch?v=DoUl7F7dWdE

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  12. Sending thoughts of strength and healing your way.

    Jessica

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  13. Sending you hugs and healing vibes and lots of love.

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  14. Thanks for the details! We love you guys! Just looked at the nursery schedule and wanted to tell you we've got you covered. If you are on treats we'll take care of that too... two less things to think about:)
    ~Nikki

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  15. Thinking of your sweet boy! Keeping him and your family in my prayers.

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  16. Praying for you and your sweet family.

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  17. What a sweet and strong boy — I love that picture of him. I'm so sorry he and your family are going through this rough time. I pray that his treatment and recovery go well and quickly! We're all holding you in our thoughts and prayers.

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  19. What a precious little one! I will keep you all in my prayers. This world can be so hard to live in. I see you are very keen on medicinal alternatives--have you decided against natural cancer treatment instead of chemo? I know sometimes people have no idea and suggest things, and other times they suggest something very helpful. So in the chance it could be of any help, I have a facebook fan of my Health page whose daughter has cancer and he's done a ton of research on nutrients for childhood cancer: http://nourishingachildwithcancer.blogspot.com/. It seems though that because they started off with chemo, they are having a harder time getting rid of her tumors than if they had just avoided the chemo altogether.

    But of course every situation is different and all is in God's hands. Praying for God to give you guidance, strength, and healing!

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  20. sjpoff - in the US there are laws in place that prevent me from choosing alternative therapies for my child. I am using as many integrated therapies that I can and saying no to as many 'non-essential' drugs that I can, choosing a healing approach instead. Thank you for the website, I will check it out.

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