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another update, Zeffens dad posted in the log last night. PS Doc go...what does he ... Networking with PinStackers forum

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    another update, Zeffens dad posted in the log last night. PS Doc go...what does he mean about the no shots??

    MONDAY, MARCH 24, 2008 12:44 AM, CDT Just a quick post to let you all know that we made it back to the cities.
    We had a good weekend. They sure do seem to fly by fast with Saturday being the only day that we are together as a family for the whole day.
    Zeffen didn't need any shots this past weekend as his absolute neutophils were at 2.3. Anything over 1.5 means no shot.
    He had very dry skin tonight. By the time I finally got him settled down to sleep I think I had rubbed his entire body down with lotion. It started out with his legs. Then it moved to his head. Finally his back and sides and I did his tummy as long as I was in the area.
    Hopefully I can get him off to school in the morning.
    Rod
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    this is for you DOC TO GO....to answer your question via messenger cuz it's easier to copy this and paste rather than type it all over, my thumbs hurt LOL


    We received the pathology report this afternoon and the new wasn’t good. Zeffen has, "anaplastic medulloblastoma of his cerebellum w/ metastasis to the lateral ventricle w/ surgery to remove nearly all of it.
    What this means is – ANAPLASTIC= cells look very abnormal under the microscope – MEDULLOBLASTOMA= his cancer type – CEREBELLUM= area of the brain in the back responsible for balance & coordination – METASTASIS= spead of the tumor (fast) – LATERAL VENTRICLE= 1 of the fluid filled chambers in the brain.
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    thread bump and update on Zeffen, poor rod hang in there this will get better.

    MONDAY, MARCH 24, 2008 05:14 PM, CDT Zeffen had an okay day today. He wokeup with a coughing spell that caused him to get sick. The couching started because his throat was so sore he couldn't sallow this morning. He has some medicine to help with the pain but he can't eat or drink anything for 20 minutes after he takes it and it only works for a couple of hour.
    Tonight the supper was pancakes and he was really excited until he swallowed the first bite. Then supper just turned into watermellon. He ate a lot of it, I even needed to go back for thirds for him.
    The itching has continued to get worse. It's really bad on his head and back. He has also gotten this attitude that when he has something bothering him I need to get it taken care of 5 minutes ago.
    Tommorow is our big day with the doctors, chemo and raditation. Hopefully his blood counts are still up. Tommorow also starts his last week of radition laying on his tummy. Starting next Tuesday he gets flipped onto his back.
    Rod




    TUESDAY, MARCH 25, 2008 10:32 PM, CDT Today went well. Zeffen's blood count is still up so we don't have any shots yet. His weight dropped down below 60lbs today so the doc told him he needed to make sure he eats as much as he can.
    Chemo went well. Putting the IV in his port went better then any of the other times. Radiation also went well. It is Tuesday so they changed the angle again so it took a little longer. Tommorow they asked us to come in at 1:00 because they are performing a longer proceedure in the afternoon.
    The itching and his throat were a little better today. I think I only put lotion on him once. I made a quick trip to the grocery store to get cheese, watermelon, and sandwich style turkey.
    Rod
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    thread bump and update..

    THURSDAY, MARCH 27, 2008 08:21 PM, CDT Wednesday was a very standard day. Radiation went well. Zeffen played in the bounce house for a little bit and then we went to the movie. It was Treasure Planet.
    Thursday didn't start off as well. Zeffen woke up sick and then went back to sleep for a while. We went to radiation which went well. They asked him to come in at 2:15 tommorow so that they can get things set up for his flip onto his back. We move into a different radiation room. Also if everything goes well, no machanical breakdowns, Zef doesn't get sick, he will be getting 11 radiation treatments on his back. Our last day of radiation will be Tuesday April 15.
    Now that I have that date I will talk with the oncologists and find out when they are going to be done with us and when Phase 2 will start.
    Tonight was bingo. There was a house full of people there so the prizes went fast. Zeffen won towards the end of the night and picked the game Taboo. We then spent about an hour trying to get each other to say things:-)
    As you can see by the new picture I finally figured out how to get the size of picture small enough on our camera to download on this site. I also downloaded some bigger pictures to the myspace page.
    Rod
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    Still praying for you Zeffen....don't lose hope.....you'll get through this and come out stronger on the other side of it. ~via BB (wap.pinstack.com)~

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    Prayers are coming in.

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    I pray for a quick and complete healing for this lovely child. God Bless Him!

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    thank you all for continuing to keep him in your prayers and sorry for the UBER huge photo, don't know what the heck happened there!
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    In my prayers tonight Zeffen and family. What a sweet looking kid! God bless Lesa

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    ~via BB (wap.pinstack.com)~
    Ill prey on your child, just post infos.

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    Quote Originally Posted by monica.simons View Post
    thank you all for continuing to keep him in your prayers and sorry for the UBER huge photo, don't know what the heck happened there!
    That's OK. It's a beautiful picture. We continue to pray for Zeffen and his family.
    Never wanted to be a simple man...

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    My prayers are with you and your family.

    Alicia

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    THread bump and update for all who are following...

    SUNDAY, MARCH 30, 2008 10:45 PM, CDT Well our short weekend has come and gone and we are back at the Ronald McDonald House for another week.
    Zeffen's blood counts were still up on Friday so no shots.
    Friday evening we stop at the Tonkadome to say high to the other players in the Coerver Soccer training class that he was in.
    Saturday he stayed home and played with Zetta and drove Charity a little buggy while I went to work for a couple of hours. Then we went out for supper with grandma & pa Johnston at the Green Lantern. It is the place that a benefit for Zeffen is going to be held on Saturday July 12th from sometime mid-afternoon until its over. More details once I remember to write them down so I have them.
    Today Zeffen got a little activity in as he went to soccer training in Brainerd. Peter said he did a few things before he got tired and looked decent for not doing much the past 2 months.
    Monday afternoon is his last radiation treatment laying on his stomach.
    Rod



    TUESDAY, APRIL 01, 2008 04:01 PM, CDT Monday was a little on the rough side. Radiation went well but that was about it. Zeffen was on the tired and crabby side most of the day . Woke up not feeling well and it just proceeded throu the night as we didn't get very much sleep. He had some major congestion and nothing seemed to work to get it to go away. We were up 5 times trying to get it figured out.
    Today has been a much better day. After I woke him up at 11:10 to get ready to go to the doctor he drank his breakfast and the day has gone very smoothly. Doc said Zeffen looks great for the point in the treatment. His blood count came back and was still up at 1.8 so no shots yet but if it keeps coming down by one tenth each day he will over the weekend.
    The flip at radiation went well today. It is a little bit longer as they aren't doing a broad sweep of the brain and spine any more but are just consentrating on the brain stem area. Each treatment starts out with a CT scan to measure the exact location he is laying and the exact location that they want to pinpoint. It gets the beam within 3mm of the targeted location.
    Zeffen received a gift package today from "Angel On My Shoulder" and he is already into watching one of the DVD that came with it. Thank you :-)
    I'm going to go and make some supper now as we have tickets to the T-Wolves game tonight and Zeffen isn't up for the subs tonight.
    Rod
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    Thanks for the updates, Monica. Will continue to keep Zeffen and his family in my prayers!
    8900-user
    DocGo

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