I know we are terrible about keeping this site posted between scans (which is twice a year now) so I have created an email notification list for those that would like to get an e-mail whenever we add a post to the website. If you click the "Get Update Notifications" tab at the top of the page it will take you to a form that you can use to subscribe to the mailing list. Thank you for your support, thoughts, and prayers they have helped us through so much.
Some of you may have been following Lacey Holsworth, the little girl from St. Johns (about 20 minutes from us) who has also been battling neuroblastoma. She recently lost her battle with the disease but in her short 8 years has touched more people than most will in a life time. Our thoughts and prayers go to her family.
We received the official read from the MRI and the results are stable! So basically what that means is there are still four pieces of residual tumor that remain, two along her spine, one in her psoas muscle, and one that is just kind of...well I'm not sure exactly, but I think behind the large intestine. There is also a small mystery spot in her vertebrae that the radiologist says is neuroblastoma but the oncologist disagrees. They have not been growing, just sitting there. We are hoping they have become a benign mass, called a ganglioneuroma. Since we are now three years out from surgery and her scans have been mostly stable we are now scanning every six months instead of every four. That's great for Gabs, less pokes! We are looking forward to a great summer and excited/nervous for Gabs to start kindergarten in the fall. Oh and for the new addition coming in October.
I spent a good chunk of my evening sitting alone on the couch and reading a large number of caringbridge updates that I've missed over the last month or two. I used to read them religiously whenever there was a new update - I've been very much in my own world this summer and havn't kept up at all.
As I sat and could barely read the words through through my tears, I was reminded what a selfish, self centered and ungrateful person I can be. I was given a "slap in the face" reminder of what I could be dealing with every day and every night, but am not. Yes, we do an MRI every four months and it carries a lot of anxiety but in those four months in between we live life normally. How is it that I can so easily forget what others are going through daily and what we were living 2.5 years ago and not be thanking God EVERY MOMENT that I can watch my children run and play and eat and even sometimes scream and fight with each other with no other worries than my sanity at that moment?
I am reminded why I allow myself to read these stories and cry and feel pain. Because it pushes me to be better, to love harder, to be thankful, to cherish every moment good and bad. It reminds me that my trials are fleeting, they are nothing compared to what they could be. I am blessed, my family and my children are blessed. I am loved in spite of my sinful nature. I have joy on earth even amidst the pain and suffering of the world and I have the promise of a better life and a better future.
Our life is almost normal right now so I don't remember to update often. We had another stable scan (2 in a row now) back in January and will scan again in May. I think we have officially moved onto an every 4 months scan cycle instead of 3. We still take many trips to Grand Rapids for her urine test every 4-6 weeks but those have also stayed steadily within "normal" ranges. All in all she acts like any normal child and we are so thankful for a breather from the constant stress and anxiety of serious decision making. We continue to pray that the small tumor that remains in her body has, in fact, matured into benign tissue and will require no further treatment or intervention.
We seem to never be able to completely escape the constant doctor and hospital visits. Gabs took a very small tumble in the house and managed to completely fracture her humerus in her right arm. Not ideal considering we leave for Florida in a couple weeks but as least a typical childhood injury and inconvenience rather than what we are used to dealing with.
It's hard to believe what we were doing and thinking 2-2.5 years ago although evidence of it remains visably on Gabrielle's body and more noticeably on my mental and emotional state. I can't explain the fear and anxiety I feel from simple illnesses like a stomach bug or the flu. Even when I know what it is and that its not serious I find myself constantly anxious in a way I can't describe. I don't think I was this way before her diagnosis although, to be fair, I can barely remember who I was before it.
Thank you, as always, for your constant love and support. We are so grateful for your continuing prayers.
Gabrielle has been doing great and had lots of fun over Christmas and New Year. It's always heart warming to watch the kids open gifts and to have time off to play and interact with them. Before her diagnoses Gabrielle was a little shorty being in the 10th percentile for height for her age, but over the past 23 months since her surgery, she has moved from 10th to 75th percentile in height and weight. Jackson too has been growing like a weed, he is also in the 60-70 percent height, but slim.
The holidays are always fun but the new year brings new scans, and associated anxiety/optimism. We scan next week, and are hoping for continued stable scans. If the MRI scan results are stable it would be her first back-to-back stable report. That is our first step to seeing long-term stability, and hopefully a cure many years from now. If there is continued slow growth, we will have to revisit how much room is left between the tumor and the spinal canal and if or when additional surgery would be warranted. We will be posting an update late next week as soon as we get the scan results.
Thank you for your continued thoughts and prayers.
We've had a busy and fun summer and we have all been so grateful for Gabrielle's good health. Although we decided to hold off on treatment (specifically chemotherapy) after our trip to MSK in New York, Jeremiah and I were both feeling nervous as Gabs next MRI date was approaching. We have not been 100% on board with the MSK approach of watching and waiting and if necessary do surgery and have felt the weight of having to make decisions (chemo as suggested by Devos or nothing as suggested by MSK) every new scan which seems to always show slow yet still new growth.
Imagine my surprise when our dear friend an pediatrician called to tell us that DeVos radiology had finally claimed an MRI as stable! We have not heard that word since Gabrielle's nine month post-op scan and here we are at 21 months. One more three month period and we are at two years from diagnosis and surgery! But I digress. I was so prepared to once again hear "slow and steady growth" that I think I had our doc repeat the word "stable" to me at least four times over the phone.
We are so extremely blessed to not have the burden of making any decisions for another three months and I want to thank everyone for your ongoing love and support and especially your prayers.
Well since today is the 12th and the day we were scheduled to go in for surgery (port placement) and Gabs first cycle of chemo, I thought I should probably update and post about our changes.
We have been consulting with Dr. Kushner from Memorial Sloan Kettering in New York almost from the very beginning. Long story short, he does not believe that Gabs needs any chemo at all. Although there is slow steady growth in her residual tumors, he would call them "stable" and would recommend no treatment. We decided that we needed to finally meet him (and have him meet Gabrielle) in person so we booked a flight and went to New York City about 2 weeks ago.
We have decided, after extensive conversations with Dr. Kushner and Dr. LaQuaglia to suspend treatment for now and continue to "wait and watch".
We are taking this on a scan by scan basis as neither Jeremiah or I feel that we we can "watch and wait" forever given the location of her tumors. If they continue to grow we may still attempt chemo in the future in the hopes to stop their growth before they hit her spinal cord. Again, scan by scan basis. We will try and wait as long as possible in the hopes that they will stop growing on their own (as Dr. Kushner believes they will) but will most likely choose chemo over another surgery if it looks like they are getting too invasive in her spine.
As always, thank you for all of your continued prayers and support. We are so blessed and touched every time someone sends a message or a gift. We are so incredibly grateful that Gabs is so healthy right now but I personally deal with a lot of emotional ups and downs and your prayers keep me sane.
Our next MRI is scheduled for September so other than our monthly trips to Grand Rapids for her urine tests, it's a normal summer for us. I may not post again until the September scan.