Draven is still cancer free and the doctor said it's "highly unlikely" for the cancer to return.
Draven can start to have some of his exams now back in Michigan, starting in June.
From that point on, it sounds like his exams will rotate (every other one) between Michigan and New York.
Andrea and Kevin are hoping that the worst is finally past them and that Draven continues to improve.
As always, they are incredibly grateful for the support they have received from you all!!!
Draven's most recent trip to New York revealed that there were no vitreous seeds in his eye compared to more than 500,000 seeds that he did have to start. He has had two intra arterial treatments and two intravitreal injections with a trip this week to New York for a third injection since they are now weekly. Andrea and Kevin will find out this week how many more treatments he will need. It could be one more of each treatment or maybe none. Draven is doing awesome!
Andrea and Kevin will also find out what the suggested follow up looks like although at this point they know next month Draven will need to have another MRI and clinic appointment with the oncologist at Devos.
Draven's counts dropped again requiring more neupogen and he had another blood draw today to make sure his counts are high enough to go back to New York. All in all though, things are going good!
Financially, the trips to New York have been draining their funds. Round trip tickets for Kevin, Andrea, and Draven have been around $1600 for a trip and, as everyone knows, New York is a very expensive city to be in. If you have any funds to spare, Andrea and Kevin would certainly appreciate anything that could be provided to them. Hotel and airfare points could also be donated.
Andrea and Kevin remain ever thankful for all of the financial support that has been provided to them over the past year! Please continue to keep Draven and his family in your thoughts and prayers.
Draven did really well in his procedure today but the recovery was rough. He is not feeling well and is sweating profusely, requiring a couple changes of bed linens. He had vomited and then developed an irregular heart beat. He had an EKG done and pediatric cardiology indicated that it was nothing to worry about. Draven is acting better now but Andrea and Kevin are still very concerned.
Please keep them all in your thoughts and prayers tonight, as it has been a very trying day for them!
Kevin, Andrea & Draven landed safely in New York yesterday. I uploaded a couple of photos of them out exploring the city.
Draven had his first appointment today. Thousands of vitreous seeds were found in his eye. They are originating from a new tumor. You don't just get them; rather, they are coming from something...in his case, a new tumor. As the seeds settle, they begin to act like new tumors, which he also has. Dr. Abramson said that Draven's eye is full of disease. Treatment will begin tomorrow and is 2 hours long plus a 5 hour recovery.
He had cryo today to increase uptake from tomorrow's intra arterial treatment. His eye is really swollen and he's uncomfortable. It was recommended to proceed with a combination treatment to cure his eye. The combo includes cryo, intra arterial, and intravitreal. Andrea and Kevin were hesitant about the intravitreal but it increases the chance of success from 66% to 99%. So far there haven't been any extra ocular post intravitreal treatment but it remains a risk.
Intravitreal is the injection of chemo into his eye while sedated. The risk is that as they remove the needle, one tiny cancer cell could hop on it and then become extra ocular (outside of the eye). Retinoblastoma outside of the eye is fatal.
Next trip out is in a month and after that exam, they will know how to proceed (include intravitreal or not, which would be weekly for 4 to 6 injections). If there is no response from tomorrow's treatment, they will move forward with enucleation (removal of the eye).
Please continue to share this page, as the original amount of money raised will not be enough to cover all of their expenses.
For those of you who don't feel comfortable providing an online donation, Draven (Dunklow) still has an account set up in his name at Credit Union One, located at 1202 Veterans Drive, Traverse City, MI 49684. You can mail or drop off donations there.
This is a very scary time for my sister and Kevin, as they try to make the best decision for Draven and their entire family. They are very grateful for the continued support and prayers! Thank you!!
An update on Draven...due to a cold with cough, sneezing and runny nose, our trip to New York has been postponed. The anesthesia department will not sedate any children who have even a minor cold. We are tentatively planning to leave Monday. Thank you to all for the continued support!
Draven had been doing well for several months but today my sister and Kevin received news that they had hoped they wouldn't ever hear. Draven's cancer is back but it is too complicated for the specialist to treat here in Michigan. The only two places that can manage it are in New York or Philadelphia, with the recommendation being for New York. Andrea is trying to arrange one way flights to New York to leave by Wednesday right now as well as trying to make arrangements for her other 4 children while they are gone.
If you are close friends of Andrea and Kevin, I'm sure they would welcome any expression of care and concern through their email or Facebook. If anyone has specific questions though, please route them through a message via this site. Andrea and Kevin are pretty overwhelmed right now and just need to focus on their family. If meals or anything else is coordinated, you will be informed of it through this site. Thank you for your understanding.
With these new expenses occurring I went ahead and opened up the donation link again, if anyone would like to contribute financially. Most importantly, please keep my sister's family in your thoughts and prayers!
Andrea and Kevin took Draven down to Devos this past week and received great news. NO NEW TUMORS!!! Also, they were informed that the spot on Draven's eye that had been a cause of concern, was to be expected and is nothing to worry about at all!
Andrea and Kevin want to again offer a heartfelt thanks to everyone for keeping Draven and his family in your thoughts and prayers. Please keep it going while they hope for a continued positive prognosis for Draven!
Just a quick update on Draven. Unfortunately, he had to get a platelet transfusion today. But that strong little peanut handled it perfectly. Andrea and Kevin said that he ate lunch through the first half while watching cartoons and then fell asleep for the remainder. He'll be heading back downstate Sunday for an eye exam first thing Monday morning.
I also added a picture of Draven with his older sister, Jalee. Draven is sporting his new glasses in the pic. He wouldn't take them off when he first got them but now he needs to be convinced to wear them. I may be biased since he is my nephew, but I'm pretty sure he is the cutest glasses-wearing little dude ever.
Again, Andrea and Kevin can't thank you enough for all of your support. It has really made this difficult journey more bearable for their family!
Andrea and Kevin have encountered their fair share of ups and downs in the past couple of weeks. To start out with, their four other children have no gene mutations on the genetic testing! This was wonderful news and certainly relieved some stress for them.
As for Draven, they had initially received news that he was cancer free earlier this month. However, earlier this week a new spot was discovered on his left eye through a MRI. It was not at all in the same location as the treated tumor. The doctors aren't describing it as cancer but they don't know what it is. Andrea and Kevin are worried as this is Draven's "good" eye, he has been on chemo the whole time, and his last chemo treatment was this past week. He will have a repeat MRI in 3 months and a repeat eye exam in 1 month.
Even if the spot turns out to be nothing to worry about, Draven is still at risk for the cancer to return so he will be carefully monitored. This will occur once a month for 3 months, then every other month for 3 months, then 4 months for 3 cycles and so on and so on. He eventually will get to annual checks around age 8 that will continue for life.
Draven picked out glasses earlier this week and the retinal specialist seems to think that he would have some vision out of his right eye given what the ultrasound picture looked like. He said at least large objects could be seen so Andrea and Kevin will continue to patch his good eye and hope for the best.
I have uploaded several new pics of Draven:
1) Draven, Daddy, and Rhys (green shirt): Rhys is a friend of Draven. He's a child life specialist and always goes outta his way for Dravey Baby.
2) Draven giving Mommy a kiss.
3) Draven in his stroller, eating a PB&J, while doing laps on the floor.
4&5) Draven eating Oreos. :)
6) Draven snuggling in his crib watching a movie.
7) Draven, Daddy, and Carrie: Carrie is his discharge nurse, therefore his favorite.
8) Sarah and Draven in his stroller: Sarah could always make him smile and is funny.
9) Laura and Draven outside his room: Laura is an awesome nurse and Daddy & Mommy's favorite! She is going to school to become a pediatric nurse practitioner.
10) A picture of the sign made for Draven by Rhys.
11) Draven on his Daddy's lap with all of the stuffed animals while receiving his last bit of chemo.
Unfortunately, Draven has been struggling lately. His hemoglobin level had dropped last week and the doctors were preparing to give him a blood transfusion this past Monday if it dropped any farther. He ran a high fever Friday and cried all night long. Andrea brought him to the ER Saturday and found that he had a virus and an ear infection, which wasn't too suprising because his siblings have all been sick lately. During the 4 hours at the ER, it was determined that Draven's hemoglobin had risen slightly but his platelets fell significantly. Normal range is 150 to 400 and Draven's level had fallen from 104 to 55 and then down to 32. On Monday, the doctors opted against a blood transfusion even though Draven is hovering close to the point of needing one. He has his last chemo treatment soon and the doctors really want him to work his way through it without needing to get the transfusion. Draven is pale, has no energy and is falling asleep constantly. He is bruising very easily due to his decreased levels. He is vomiting tonight, again most likely catching whatever virus his siblings have been sick with.
Andrea and Kevin took Draven to GTOC this past Friday as well. They found out that he has 20/20 vision in his "good" eye, the left eye. He, however, can see very little to nothing at all out of his right eye. The combined damage from cancer and treatment has disrupted the way the message is sent from the eye to the brain and back so much so that it can't be restored. He has to wear a patch over his good eye in an effort to strengthen the damaged eye. He hates wearing it, crying while it is on, and it has been a struggle to keep him wearing it. It has become obvious to Andrea and Kevin that Draven cannot see anything out of his right eye when he wears the patch as they try to engage him in activity. He does not respond to movement when it is in front of him. Lastly, Draven will be getting glasses to help with this process.
Draven's twin sister, Joslyn, has also been having some health issues. She has been on steroids for breathing issues 3 times in the last 4 months. She is currently on a steroid nebulizer twice a day for 2 weeks and then will need daily treatments until May. She is also doing an albuterol nebulizer.
Please continue to keep Draven, Joslyn and their family in your thoughts and prayers. Andrea and Kevin can't thank you enough for your support!!!