Welcome

to Hannah's blog. Hannah, a happy healthy 7 year old was diagnosed on January 30, 2007 with medulloblastoma, a malignant brain tumor.

It's new

I know it's new, and lots of junk still here, but it's a new template I'm trying out. Still lots of work to do, we'll see!!

Wednesday, April 2, 2008

We met today with the surgeon who put Hannah's port in and will take it out next week, Dr. Scrivins. Very nice man, he set us at ease about the procedure. I had some questions about anesthesia, recovery, Hannah's counts, complications, etc. The doctor said he has done over 1,000 port removals and has never had one break before. He has had 2 cases where the catheter came unattached from the port itself, and got stuck in the artery, which is why he does these procedures in the regular OR, rather than only in the ambulatory surgery area, where they don't have all the resources available if you need them. Hopefully, we won't need them. The whole process will take about 3 hours, including preparation, anesthesia, operation (about 30 minutes), and recovery.

We have another meeting with the anesthesia team on Friday. I want to discuss what kind of drug they will be using, since Hannah doesn't react that well with most of them. We learned that in Boston, waking up over and over after radiation kicking and screaming. I know they will put her out with the mask, then insert a peripheral IV for the procedure. I will get to put on the bunny suit and accompany her back into the operating room as they put her to sleep.

Today she started crying in the doctor's office, asking if was going to hurt. She was referring to the IV, when she heard them mention IV, she got upset. That is the only part she really cares about, not really knowing what to expect from the surgery itself.

I just keep telling myself that this will be a walk in the park compared to the other surgeries she has been through. We've made it through those, so this should be easy.

Now on to the exciting news....THE WII'S HAVE LANDED!! Hannah and I stopped by Walmart on the way home from the doctor's office, and they didn't have any Wii's, but directed us to a store that did! They held one for us, and when we got there, they allowed to us buy two of them! It was pretty exciting for both of us! Hannah plans on giving them to Schneider Children's hospital, and Spaulding Rehab Hospital in Boston. We have already spoken to Schneiders to be sure they would be able to hook them up and use them. They do have a Wii already in use in the transplant area, so it is possible. We will either donate it for the 4th floor oncology inpatient ward, or the 2nd floor clinic where Hannah makes her visits, they said it's our choice. There really isn't that much room on the 2nd floor, so our thought it to put it in upstairs, where they kids are there for longer periods of time, and really need the activity they can get with a Wii!

We really have been inspired by Team Henry. Henry Tucker is a little boy who was diagnosed with B-cell ALL, a common form of childhood leukemia. After 3 years of remission, Henry's cancer came back as a rare and very aggressive form of t-cell leukemia. Henry died in June of 2007. Henry's family have created the Henry Tucker Foundation to raise awareness of childhood cancer and to offer support families dealing with emotional, financial and physical difficulties. They are doing amazing things, leading the way to get the Conquer Childhood Cancer Act to the floor and passed, among other things! They are certainly one of the most active families in the world of childhood cancer, I admire them. This team sets the daily strategies that I and many others have been following for calling our Senators and Representatives. They do so much more, it's just amazing. We have been inspired by Team Henry's donation of 11 Wii's to Henry's hospital...and then 11 more! A total of 22 Wii's! WOW! They donated enough for each room, plus each transplant room in their hospital. Henry was one special little boy, and he has a lot of people working in his memory. You can check out his site, and everything they are doing click HERE. You can usse my email address if you just want to view his site and don't want to register.

The girls do not have school tomorrow due to parent teacher conferences, so they are up late tonight, enjoying American Idol. Tomorrow we'll just enjoy some down time together. Doing stuff like this.....

xoxo Kim

5 comments:

  1. Anonymous said...
     

    HI Hannah i just got my ears pierced today (my mom made me wait until 2 days before my 13th birthday) i feel your pain! do you have any suggestions on how to make the pain go away?
    ~Kaitlin Beebe

  2. Dianne Killian said...
     

    I am thrilled that you found your Wii and how sweet to buy 2....Love that:) and LOVE that you were inspired by Henry...He would love that too! Take care and thanks again for being part of team unite. You girls ROCK!!!!!

    Sincerely,
    Dianne Killian
    TEAM UNITE! Help Conquer Childhood Cancer! http://heidster.com/team_unite

  3. Anonymous said...
     

    Well good morning to you all today! Even though it's almost lunch time where you are! Great pictures! I love the school play and the Wii's! How great is that. I need to get one of those for the kids. They look like fun.
    So Miss Hannah, you get to have your port out!! How GREAT! Kasey has to have one put in.. not so great! But.... Don't worry about the stinkin IV's.. you will be long done with those really soon!
    Hope you guys have a great weekend. My brother is coming to visit next week, I can't wait. I also wanted to thank you guys for all your notes in Kasey's guestbook! Thank you for being so encouraging and supportive!!
    Talk to you soon!!!
    Amy... Kasey's mom

  4. Anonymous said...
     

    Hi Kim & Hannah,

    Glad to hear everything is going so well.

    I too was worried when Josh had to have his port removed. I actually put it off for awhile. Compared to all the other things they had to go through, it was a piece of cake. When Josh woke up & I held him, he whined a little. But, once he was fully awake, it didn't bother him at all. No pain reliever. I think when I held him, I kinda of squeezed him too much.

    Less than an hour later, he was running all around his room.

    I love reading your blog. Hannah is one special little girl. I always loved seeing her in Boston, she always had the cutest slippers and pretty smile.

    Kim, I too feel your pain of having a puppy. We have a puppy and she is chewing everything in site. A couple of times I caught her at my DSL cable. So far, she hasn't gotten through. If she does, maybe your husband can fix it. Sounds like he has had lots of practice.

    Take care,
    Gloria & Josh Quaintance
    your frineds from Boston
    www.caringbridge.org/visit/joshq

  5. Anonymous said...
     

    Hannah,

    Gals to see that you finally found the Wii's. I had beenlooking for them to for you but no luck. I am sure that all the kids will love it. Can't wait to see you in a few weeks.

    Love, Aunt Susie

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