Although it has been described as benign, a recent MRI had shown what was left of the tumor to be growing aggressively and she was taken in urgently for another surgery. Hadley is currently in ICU and will also need to undergo radiation therapy. Your donations will go a long way to helping the Burgman family with the mounting costs of treatment for Hadley, and of course your positive thoughts and prayers are much needed and appreciated.
We are home!! Thank you all for your support and love, our girl is home and happy. We had the surgery last Wednesday to place the catheter and drained 40ml (!!!) of fluids. We then rested on Thursday but needed to adjust the catheter a bit, so surgery again Friday. Hadley was in the PICU until Saturday and we came home. After a brief ER visit for pain management on Sunday, we are getting so much better. We had the most amazing care at Joe Di Maggio, they have our hearts for life. I swear Hadley is the mayor of the hospital, everyone knows and loves her. We are currently at home, pain is well controlled and she is up and ready to get back to summer school. We really seem to have been incredibly blessed this go round and we are so grateful. This has been a crazy two weeks and such a rollercoaster of emotions. The 4am ambulance ride triggered what was needed to happen. Honestly, I can't believe how lucky we have been so far in our healing journey and we have so many wonderful people in our lives that make this happen, thank you. Thank you to our sweet friends Laura Bracken Chaibongsai, Rachel Silverstein Altman, Dawn Shirreffs, Mandy Karnauskas for the most yummy Jeni's Ice cream package. Noah and I very scientifically assembled the flavors and taste tested them. For Hadley's approval, of course. She loves all, like her mama. Noah prefers all chocolate. Also, thanks to aunty Barb Burgman Keiser and uncle John Keiser for the super fancy snow cone maker, perfect timing. They are currently kinda tucked in on the couch and watching the Croods and making each other mildly crazy but yet unable to sit apart from each other... Yay! back to normal. It honestly amazes me how adaptive these two are, I am humbled daily. We are looking forward to healing and normalcy and if you can believe, for school to start. Not to be forgotten, thank you so much for the cutest hedgehog ever! I don't know who to thank as the box had no name, but she comforted Hadley during multiple MRI's and surgeries this visit. You are all so very important in our lives and we are so grateful, thank you. If I have forgotten to thank anyone, I apologize, but know I thank you in my heart each day and night.
Hadley Update: First, thank you all for the thoughts and prayers, texts, calls and love. Unfortunately, we have had significant growth of two of the cysts, the solid portion of the tumor seems stable. Our previous plan of returning to St. Jude yesterday has been cancelled and we are booked for a third brain surgery on Wednesday. We will place a catheter in one, maybe both of the cysts and remove fluid as needed. The catheter will remain in place and we can use it in the future should the need arise.
We have known this was a possibility since January however, Hadley was not showing any symptoms so the decision was made to hold off. This is the least invasive course of action and will hopefully address our concerns. There are a few silver linings here that we are so thankful for. We are at home, our home Endocrinologist is staffed at Joe Di and is brilliant, the neurosurgeon is our first neurosurgeon and we are confident he is our best guy for the job. Hadley is in the middle of summer so no missed school/ activities.
This never becomes easier but, maybe we become better at handling our response. We breathe, try to find the fun and normalcy in each day and realize that we are not alone. We are tremendously fortunate in so many ways and we hold tight to that and to each other. We have a wonderful community of neighbors, friends and family, thank you. It means so much in that in the quiet times we can read so many messages of love and well wishes for our girl, thank you. We will continue to update. Love to all
Thank you all for your patience and understanding as we navigate this new territory. We are sad to say that there has been significant regrowth of tumor and cystic materials in Hadley's brain. We felt so confident from November's stable scan that we went in confident this would be a great scan. It was nauseating. This is the reality of pediatric cancers and brain tumors. We are always waiting for the other shoe to drop, for us and all families affected by cancer and brain tumors, it's just a matter of time. This is in an area that was previously treated and the growth was unexpected. We have seen our amazing pediatric neurosurgeon here and St. Jude has sent off scans and Hadley's information to two of their best recommendations, at both NYU and Columbia. We are reaching out to Nicklaus Children's here in Miami as well. This came as an absolute shock as Hadley has had no symptoms at all and is thriving in school. I have no real updates other than we, as a family, are holding tight and loving every minute of regular crazy life and praying for the least invasive method of treatment. We love you all and appreciate the messages, I apologize for my very delayed responses. I don't know what to say, but thank you for the sweet thoughts and prayers. I will try to keep you all posted as we progress. Again, thank you all. Your comments and love keep us going, they are what help us through this. It should also be noted how amazing Noah is as a brother, he has such an easy smile and his wish to help is incredible. They are simply adorable together. We are so very fortunate and we are so very grateful for each of these moments. As always, thank you. XOXOXO
This is not an appeal for further financial support. You all have made such a huge difference by your actions these past three years and we are thankful beyond measure. We simply want you all to know what is happening with Hadley, the good and the bad.
We are overwhelmed by the response in the last 24 hours and we are profoundly thankful to all of you for your positive thoughts, prayers, and donations. We will work to keep you updated on Hadley's progress over the coming weeks and months as we continue this fight. For now, Hadley is still in the neuro ICU at LeBonheur Children's hospital as her endocrine system recovers from the surgery on the 29th of February. She went for a wagon ride today and was able to walk for a short time. I will try to get some pictures and videos posted as soon as possible. Love, the Burgmans
Oh my goodness Rob, Hadley is just so adorable, and you are right, she definitely has some moves! (really great rhythm!) No doubt a good teacher for her little brother. My prayers and thoughts are with you - may God bless her little heart (or big heart from what I see), and give you and Phoebe strength.
I am so sorry you and your family went through that. I pray they find out what is causing her pain. God bless you all.
hope it's just a simple stomach bug what Hadley has and wish Noah also safe recoveries. sending good vibes and prayers your way!
Professor, you are a great man and you have a very strong family to endure such an experience as you have. I pray for you and your family.
This is great news! John
just to let you know that your updates are appreciated, Sending you a ton of positive thoughts and vibes.
Thank you for the updates on your sweet baby girl. God bless you and your family!
big hugs, not bug hugs ;)
Love you all Rob Prayers for Hadley and your family.