Port Surgery Complete
(Belle in her 50's outfit for school a couple of months ago)
Today was a big day in beginning the battle against Belle's brain tumor....placement of this port is very important! This amazing piece of technology that seems so simple helps so very much in the process of delivering chemo by accessing the bloodstream via the largest artery that goes into your heart. Learning from Sarah's experience and having to deliver the chemo agents via an IV each time is difficult and painful. The chemo and having to get intravenous sticks every time for chemo causes bruising and on some of the occasions seemed to burn her veins. I do not want by baby girl to have to experience the same situation. So this port will allow the doctors to take blood (when necessary), administer contrast for her MRIs, and obviously deliver the chemo agents. So even though its another surgery to go through, its well worth it in the long run! Belle was very anxious and scared after we told her that she would have to go through surgery again to get this device placed in her chest. I can only imagine what was going through this 7 year olds mind regarding this "thing" that is about to be placed in her for the duration of her treatment. She had a ton of questions and you could tell she was nervous and scared about the surgery.
We thought it would be best to meet someone who had a port and to see that everything is ok when you have a port placed in your body. We have a wonderful neighbor whose sister is going through her own breast cancer journey herself (by the way she's rocking her battle against cancer as well and is a strong woman) and thought that she would come over to talk to Belle so we reached out to her and she was more than happy to come talk to Belle and show her the bump where her port is located. She came over and talked to Belle.....Isabelle had plenty of questions and ultimately did feel her port in her chest even though she was apprehensive to do so at first. I think that did help alleviate some of Isabelle's concerns over this device that will be placed in her body. Her biggest concern throughout the process seemed to be the fact that she would have to put numbing cream on her skin where the port is located about an hour before going in for chemo...bless her little heart she was scared that would hurt! I can see how some of this would be so very foreign and misunderstood when you're seven years old.....I just want to help her not worry about such difficult things and protect her....I try and remind her to just to be a kid and let mommy and daddy worry about this stuff! But I tell you what she's so smart and she does get most of this stuff! I have to remind myself this is hard and scary on her as well....I'm sure she often worries about her future and her life! I know that last night she was scared about surgery. To be honest I was scared too and worried for my daughter...I can tell you that the last couple days have been difficult for me and I have struggled to stay positive. Depression and sadness can sneak up on you when your at your lowest....well let me reassure you that Sarah didn't let that happen for long...I wish I could say that I was strong enough to pull myself out of my slumber on my own but that was not the case! Yet again my wife provides the strength our family needs and says "Mac take a happy pill and get your s*^t together" (as kindly put as she can)...God bless that woman and her unfailing and never ending strength! See I present like the strong one but to be all to honest this family's strength and ability to forge ahead starts with her...I'm sure most of you aren't surprised by this at all...so moving on lets just keep pretending that I'm really the strong one (wink wink)!!
So onto surgery...we got to Children's Hospital South Campus (thank goodness we didn't have to go to the main location) at 7:45am which was good since she didn't have to go all day without eating....we got to meet all the nurses, surgeon and anesthesiologist prior to surgery (everyone there is wonderful and so good with kiddos by the way.....that helps alleviate some of the stress). Belle got to pick the smelly stuff for her N2O mask...she went with bumble gum although I though she should have went with watermelon. This time we were able to join her in the surgical operatory as she went to sleep which very much helped calm her concerns. We did have to get fully dressed up for the occasion in a full hazmat suit and blue mesh cap.....all I needed was a weapon and I was ready for a zombie apocalypse! Imagine Baymax from Big Hero 6...I should have taken a picture of Sarah and I...Isabelle thought we looked funny! She did great going to sleep and was calm....they said the procedure would take about 45 minutes...maybe an hour if everything goes well. We went the family waiting room after leaving the surgical operatory at about 9:40am (thank you Julie for bringing food from Kneaders Bakery)and I didn't anticipate hearing for the surgeon for at least an hour to 90 minutes.....well the door opens at 10:07am and the surgeon entered and said "everything went perfectly"....freaking music to my ears! Praise the Lord....Belle did great.....enough said! Minimal general anesthesia and just a small incision...recovery only took about 30 minutes and we were on our way home...amazing! We had to stop and get something to eat on the way....thank you McDonald's for your all day breakfast menu! :)
We spend the rest of today relaxing and watching television. She is in very good spirits and seeming to want to eat every hour...that's a good thing other than eating us out of house and home! She was adamant about changing into a dress once she was comfortable and confident about moving her arm just enough to get that dress over her arm (she loves her dresses and constantly changing throughout the day). I can tell you that she still is very hesitant to move it all when she is laying on the couch or up and walking. Our hope is that she is well rested and ready to go back to school by Wednesday...one more day of having to hang out with dad all day!
So moving forward....Belle has progressed very well in her motors skills and walking on her own! She still has some moments of balance control issues (vary rarely) but she is truly walking on her very own! I can't tell you how proud I am and happy that she is able to just walk without assistance. I too am guilty of taking the ability to walk on your own for granted....I'm so happy that she can walk on her own...hopefully some day soon she will be able to run again! Things are improving for Belle...God's healing is present and heavy handed each and every day. We did have the conversation with her that she has cancer which I have been dreading and avoiding but she actually asked Sarah if she has cancer so figured its best to be honest rather than lying to her and waiting to tell her until we were ready....that would not be fair to her. There was something calming about the conversation and the way she handled the news....we just reassured her that everything the doctors were doing were to help eliminate the cancer and get rid of "ball thingy" in her head as she put it. She knows the medicine she will be taking is similar to mommies and is there to help stop the cancer from growing and keep it from getting bigger. We could tell that she was over talking about it when said "ok let's not talk about it anymore!".....I loved how she handled it and how strong she is! She's a rockstar...there is no wonder or question where she get it from....I'm a very blessed and thankful man!
Chemo starts on Friday (1st session of what I figure will be about 36 to 40 sessions till haven't done a complete count)...one session closer to the end but we will just take one day at a time! We learned that all to well from Sarah's treatment.....we cant look to far ahead and just need to focus on today and allow tomorrow to worry about itself! She will start with Carboplatin and Vinblastine chemo combination on the first Friday of the cycle and then the following two Fridays she will only get Vinblastine...then get one week (Friday) off and then start the cycle over again. We need to see some reduction of the tumor in the first couple of months (MRI March 3rd) to ensure the chemo is working so prayer warriors out there continue to pray hard...I beg you! Let God hear all the prayers for Belle's healing, that the chemo is working to reduce the size of the tumor, that it's killing the cancer cells and that she her body is managing the chemo. So this week is week #1 of 2016 and we start this journey in good spirits and great optimism. With God at our side and watching over our daughter all is possible.
I want to end this post with a sincere thank you to everyone out there providing support and love in so many different ways! We are so very fortunate and lucky to have the support, love, and prayers coming in from everywhere and from so many...words can't express our extreme gratitude and appreciation!!! I appreciate each and every one of you out there....truly! I wish I could thank each of you individually here for your words of strength, kindness, dinners, support, donations, and prayers but there are far to many of you out there to thank without consuming this entire post with those thank you's and words of appreciation...perhaps a future post will just solely be that!
I did want to let everyone know of a fundraiser that will be taking place for Belle on Saturday, February 27th so please mark your calendar to come and share in this journey and support Belle, we would love to see everyone....details to follow in the coming weeks so please keep an eye out for that! We will keep everyone posted in the coming weeks on her progress with chemo and to keep everyone informed of how things are coming along!
Thank you,
Mac, Sarah, Michael and Isabelle
Philippians 4:6, 7 - "Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your heart and your minds in Christ Jesus"
Roams 15:13 - "May God of hope fill you with all joy and peace in believing, so that by the power of the Holy Spirit you may abound in hope."
Believe in the power of prayer! Amen.......
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