A light at the end of the tunnel

In recovery after the MRI

Last Friday Madeleine had an MRI. On Monday we got to see it/talk about the results with Dr. Park. Essentially, she said  she did not know where we would be going from there and wanted to wait until tumor board to come to us with any recommendations. We got the phone call from Dr. Park this afternoon about her discussion at tumor board and with the surgeons.

Dancing with daddy!

Breakfast with the parents before her appointment

First, she started by saying that Madeleine’s recovery thus far had everyone so happy and she said that she’s sure it made everyone’s week. :D They were all surprised and so pleased. That is really nice to hear.

Second, they have determined that more chemo would not be beneficial. Her tumor decreased dramatically after the first 2 courses of chemo and not as much this 2nd time. She thinks we’ve seen the shrinkage we’ll see from chemo and that further courses would show some shrinkage, but not enough to make it all worthwhile. Ok. That will make Alex happy, because he is really worried about the effects chemo will have on her long-term (brain/learning disabilities, eye sight issues, hearing problems, and on and on).

The third option was to either do surgery or wait and see what the tumor does. Initially she was talking about neuro-surgery, but after talking to the general surgeons and neuro surgeons, they have decided that the best route is general surgery. Since the tumor has released the pressure on her spinal cord that had been causing the loss of movement, there’s no sense in doing the risky surgery into her spinal cord where the tumor still is. Instead, they would like to do general surgery to remove as much as they can that’s currently on top of/pushing on her lung. The problem with not removing it now is that it can cause her lung and bone structure complications in the future should they leave it.

I asked Dr. Park how many cases similar to Madeleine’s she’d seen where they did and did not remove the tumor. She said she has only seen one where they did not and that child does have complications due to leaving the tumor in. She said all the others had it resected (removed) and were not having those complications.

So, we will have an appointment with the surgeon and get to ask all of our questions, and they are going to schedule the surgery for 2-3 weeks from now. Then after she recovers from that, they’ll do another surgery to remove the port. After that, she’s done!!! Done done done!!!! No more chemo. No more surgeries! Just visits to the clinic once a month for check-ups and every 3 months she’ll get an MRI. I am beyond ecstatic! I feel like we can finally see the end of the tunnel of all of this.

I am scared for this surgery. It will be major. They have to open up her whole chest. :( But then she’ll be done! :D We will still have physical therapy and all of that though.

Waiting for our physical therapist today and sitting on the couch like a big girl

Speaking of  physical therapy, we had PT today. I was told by her physical therapist that she will almost definitely walk, will almost definitely be able to participate in recreational sports, that she will more than likely be able to lead a normal, un-disabled life. :cry: You all have no idea. I tear up just typing this. I cannot believe it. I truly can’t. I am so thankful. All I have wanted and wished for and hoped for was for her to lead as normal of a life as possible, and now she can.  Thank goodness!

I will update ASAP with her 12 month post, but wanted to get this news out here as soon as I could. 😀



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5 responses to “A light at the end of the tunnel

  1. Jo

    I am so thrilled for everyone!!! She looks so great and I’m am so excited and teary too about what the PT said! Yay!

  2. Grandpa Steve

    Truly great news guys! I know the surgery doesn’t sound fun, but as you said, it will hopefully be the end of active intervention and on to monitoring.

    We are all thinking of you and wish everyone the best. Give Maddy a big hug from all of us.

  3. aaaaaaaaaaaaaaaaaa! this is all SUCH good news. I am crying reading it too. SO SO SO SO SO happy for all of you 🙂 you have come so far in such litte time – only a little bit left. you can doooooo it!

  4. So encouraged! I’m going to keep praying that she recovers fully, and that she will become such a fighter and a blessing to people who are less fortunate. That she will be such joy of your lives, and that all of this have made you a better family, better people, better mom and dad and daughter, better husband and wife. Do you think you should get a second opinion, and on such a short notice I’m not sure if it’s possible/necessary but just wondering? Can’t wait to see her at her second birthday! It’ll be so much fun!!! 🙂

  5. grandma

    You have worked so hard to follow through with everything the Drs have asked in Maddy’s treatment – she is lucky to have you. And we are blessed to have her. Just so happy that the news is good- be brave- love you.

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