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.
Jackson and me lounging over break. He obviously has a little more energy than me.
Gabs and mom on a 3-D movie date night.
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.
In Central Park
In Central Park
At Memorial Sloan just before sedation.
Where to begin. About two weeks ago we went in for yet another MRI. It feels like three months goes by so fast! Basically, Gabrielle still has four areas of continued growth around her spine. The problem this time is that these residual tumors seem to be starting to invade her neural foramena. In other words - it's creeping into the holes in her spine where the nerves enter in and out. Although these tumors are still very small and not giving Gabs any symptoms, we fear that if we continue to "wait and watch" they may interfere with nerve function and perhaps cause damage.
We met with Oncology and Neurosurgery yesterday and it seems to be the general consensus that we try chemotherapy. The hope is to stop the neuroblastoma from growing further and even shrink it. Although surgery seemed the best case scenario when she was first diagnosed I fear that we would not have the same outcome the second time around. She lost two nerve roots and a chunk of muscle in her right hip/back and amazing had no obvious detriment. She walks, runs and climbs and if she were completely whole! Knowing how small the residual tumors are and how much scar tissue she has inside her tiny body makes it unlikely that she would make it through another surgery without losing more nerve roots. This isn't a risk we are willing to take right now. And so, chemo begins.
The plan is to start her on intermediate dose chemotherapy on July 12th. She will have a port placed back in her heart and be admitted that same day to begin treatment. Each cycle should be a 3-5 day inpatient stay and within 21 days of her first dose, we should be back in the hospital again for the next cycle. This is all assuming that she handles the chemo well and doesn't suffer from too many infections and hospital stays between cycles. The plan is two cycles then an MRI and then most likely another two cycles.
Although at the moment I feel fine - even hopeful to have a purpose and a plan to actively try and rid her of her cancer, I know that when the time comes to actually drive to Grand Rapids and begin - I will be terrified. I've been the most afraid of chemotherapy since she was first diagnosed almost a year and a half ago. I worry not only about what it will do to her tiny body but also how I will learn to care for a child who can get sick and be hospitalized so easily. I don't feel up to the task. I know already that the physical representation of her illness that she will, unfortunately, finally experience in losing her hair, will break me. Everyone is so proud of her huge, fluffy, ringlets and I hate that she will have to start over. Additionally, I have a massive amount of mommy guilt about leaving Jackson so often. I know, don't tell me, he won't remember! But I will and still feel bad for leaving him and selfishly sad that he won't be around to comfort me.
We do have the amazing opportunity to be up in Pentwater the week before her treatment starts with the entire Waligorski side of the family. My parents have rented a cabin and everyone - including my sister and bro-in-law, Rachelle and Ed Thomas, who are in the Army and live in Texas will be there with their kids. Four kids, our spouses and our six kids, collectively. Seven adults and six kids doesn't seem like a peaceful ratio but we should have a blast and it will be a great way for us to try and enjoy our summer as much as possible before we are more limited by Gabrielle's health.
We have been so incredibly blessed that she has spent almost a year and a half after being diagnosed with cancer, completely healthy and strong. I always say - She's perfectly healthy except for cancer :) I cherish this last year that she has been able to simply be a child with no other worries. Please continue to pray for her health as we head into darker territory. Our prayer for her - other than complete healing - is that she could live as normal as possible and still be able to do and experience as many activities as she did before the chemo began! Thank you for standing with us and not only praying but also DECLARING that she WILL be healthy and she WILL be healed.
All our love - Abigail Asher
Last night we took Gabs in for her 3 year check up as well as Jackson's one year. I honestly still can't believe my little girl is 3! It has all gone by too fast but especially this last year seems to have flown by. I still think of her as my little 2 year old and it's only when she says something extra funny or dramatic (serious drama queen) that I remember she isn't a baby anymore and she has a lot of spunk!
Jackson's check up went great. He's not a big boy - about 21.5lbs and only about 30th percentile but he seems to have had a bit of a growth spurt and hit 60th in his height. This is great news considering Gabs always hovered around 10th for height!
Gabs was fiesty and really made our pediatrician work to get what she needed. She of course did height, weight, temperature and blood pressure like a pro but it took some bribing and teasing to get her belly checked. It does appear that she has some slight scoliosis in her spine. We are getting a referral to Ortho to get a 2nd opinion and decide if it's anything that needs to be treated. Her spinal surgery (laminectomy) put her at a higher risk for scoliosis so it's just something we need to keep an eye on. Please pray that we find it is so mild that nothing needs to be done.
Our next step right now is to w for our May MRI to be scheduled. Thank you as always for your constant notes, prayers and support. They lift us when we are feeling doubtful and remind that us that we are not going through this alone.
Getting ready for horse back riding
Yes, I know we take too long between updates on this site. We are working on posting more regularly. If you are a Facebook user you will get more frequent updates as Abigail posts small blurbs and pictures every other day.
The Make-A-Wish trip was absolutely amazing. We had a great time. We stayed at the Give Kids the World Village, which is a village set up just for kids with life threatening illnesses. Foundations such as the Make-A-Wish foundation and others sponsor the kids so they can stay there. The village is run by mostly volunteers, about 1,400 per week offer their time. It is a very eye opening experience to be there. Everything at the village is set up just for kids, zero entry pool, archade, train rides, castle, carosel, spa for kids, charater visits (Mickey and Minnie Mouse, Goofy and others), and horse back riding. So there was always something to do everyday at our village if we wanted. However, we spent most of our time at the Disney Parks, Sea World, and Universal, where I found out that apparently I can't ride big roller coasters without almost hurling.
Magic Kingdom was the most fun for Gabrielle, because the rides were all her size and their was so much for her to do. One of the things we will miss most about this trip and the visit to the parks was our special pass we had which allowed us to pretty much go to the front of any line. Gabs was able to bypass the 2 hour line to get her picture with Rapunzel, where she was so excited she took three large leap frog jumps toward Rapunzel and her little shorts dropped to her ankels on the third jump. She didn't seem to mind she just picked them up and went on with her business. I think I am forever ruined to go to the parks without the pass again.
There is so much to write about from the trip that it would easily fill a book, so I will post some pictures in a couple days to tell the story. I will say that poor Gabs did get sick the morning of our flight and threw up at the hotel, the airport check-in line, and twice on the plane. She was very matter of fact about it and never complained. Luckily she recovered quickly and it didn't cut much into her fun time in Florida.
I'm going to add a couple other udates while I'm here. First, is the polar bear plunge for a princess fundraiser going on this Saturday at Hawk Island park in Lansing. Our amazing pediatrician offered to put on this event for Gabrielle, she has been a great friend and big blessing to our family along with all of our other friends and family who have supported us through prayers, gifts, money, food, friendship, and more. They created a facebook page for the event that can be found at: http://www.facebook.com/#!/events/278107948920900/
I personally am not raising money for the plunge but will diving into the water in support of all the other plungers who have raised money.
Lastly, we met with our oncologist and surgeon this past Friday. One of the options that was on the table a month or so back was attempting to surgically go in and remove the residual tumors. However, after further consideration that would carry some risk of nerve damage due to their locations, along with other potential complications of a big surgery, add to that that the surgeon doesn't know if he would be able to successfully find all of the tumors because they are so small. One option that is being discussed right now, is if the resisual spots continue to grow at a slow rate, the surgeon will wait until they get large enough to remove or until they potentially cause a problem pushing up against neighboring tissue. As a side note, because these tumors are slow growing, chemotherapy may have limited impact on them, so in the short-term that seems to be taken of the table. To summarize as I alluded to in the previous post, we are going to observe at the time. We have another scan coming up in May and we will see if the residual spots are still growing or if they are remaining stable.
Something has been lingering in the air over here and it's not only Jackson's stinky diaper this time. It's the excitement of the upcoming Disney trip, which we are all looking forward to. This will be a short update. We will be meeting with our surgeon and oncologist in Grand Rapids when we get back from Disney to discuss our treatment and risk options. On another front we consult with a Doctor at Memorial Sloan Kettering in New York who specializes in neuroblastoma treatment. I spoke with him this afternoon and after reviewing Gabrielle's scans he recommends waiting for the next set of scans to see if growth continues or stabalizes.
Although neuroblastoma is one of the deadliest childhood cancers, researchers are finding that biological markers can help predict if the tumors will act aggressively or behave more benign. Neuroblastoma is one of the only cancers that can turn from malignant cancer to a benign tumor. Under a microscope Gabrielle's tumor has both favorable and unfavorable components, but most of her biologic features lean toward a less agressive tumor. So we are caught in this grey area, where her tumor has the potential to act agressively or benign.
It changes from minute to minute but at the time, we are leaning toward observing without surgery until her next scans in April to see if the residual tumors stabalize or continue to slowly grow. The thought being if given the chance Gabrielle's tumors may mature into benign nerve cells instead of immature malignant neuroblast cells. If the tumors continue to grow she would likely have surgery and/or chemotherapy. We will know more after talking with our oncologist at Helen Devos when we get back.
Although this was our first MIBG scan, everything seemed pretty routine for us at the hospital. The first day Gabrielle received an injection of radioactive I-123 and MIBG. Short of an IV poke, this was pretty quick and easy. The injection lasted about 5 minutes and then we were done for the day. We were able to take her to the Grand Rapids Children's Museum and to the Grandville mall play area (we met Uncle Matt there). The next day was the actual scan. It takes about 1.5 hours and involves a full body CT scan fused together with a MIBG scan. Basically the CT takes pictures of all the organs, tissue and structures, and the MIBG scan looks for concentrations of the MIBG that usally collect in neuroblastoma tissue.
Unfortunately, Gabrielle had to go under general anesthesia instead of sedation. When she is sedated we are able chat with her while she has a drug injected and then she peacefully goes to sleep while I lay her down. When she wakes up she is a little groggy but usually happy. On the other hand, when she has general anesthesia, it takes several people to hold her arms while she screams and the anesthesiologist holds a mask over her face until she goes to sleep, crying the entire time. When she wakes up she tends to be very upset and continues to cry for about 30-45 minutes.
The two days at the hospital weren't too bad. It's sad to say that we feel at home at the hospital but we really do. Partially because of the amount of time we have spent there and partially because they did an amazing job at making Helen DeVos Childrens hospital not feel like a hospital. Still, we were all a little tired by the end and ready to go home.
Today was a bit of a mental rollercoaster; we anticipated getting results, but they were taking some time to arrive. Generally, longer response time meant bad news. So even though I felt that she would remain a stage 3 (no metastatic tumors), with every hour that passed, I (dad), couldn't help but wonder if they had found something and it was taking time to review it. Thankfully my intuition was correct and when we finally got the results this afternoon we learned that she has no metastatic disease (meaning it has not spread from her abdominal cavity). The CT scan picked up the existing residual tumor that we were aware of but showed no distant tumors. The MIBG scan showed nothing, which is reassuring but not conclusive. This means one of two things in regards to the residual tumors 1) Gabs is one of the 5-10% of kids whose tumors do not soak up MIBG and this test will be useless in the future or 2) Gabs residual tumor has matured to a benign tumor and she has no more neuroblastoma. This second option would be wonderful and is possible, but I do not think likely. Right now I am cautiously optimistic.
So what do we do next you ask? Good question. We will likely biopsy one of the masses to determine if neuroblastoma is present and if so, what type (aggressive or more benign). We will then consult with our docs to figure out treatment options. Overall, today's news was very enouraging, but we still need to decide what to do with these slow growing spots and determine if the new one (in the lymph nodes) is new disease or something else.
Thanks for all of your thoughts and prayers! We deeply appreciate all of the support we have received and interest that everyone has been taking in our little girl.