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!!!
Andrea and Kevin are down at Devos and have received good news!!
Joslyn, Draven's twin sister, is still free and clear of cancer. She will need another eye exam in 4 months and then one last exam 6 months later. At this point, the older three kids will not need any more eye exams because if they haven't had the cancer by now, they won't likely get it.
Draven continues to amaze his parents. His left eye is now cancer free!!! The tumor in his right eye is becoming more translucent, which is good. The doctor is happy with the results. Draven only needed treatment this week on his right eye, both cryotherapy and laser photocoagulation.
Andrea had noticed some irregularities in Draven's right eye, specifically his pupil and his iris. The doctor took a close look at it this past Monday and said that both are a result of treatment and may or may not go away. It is possibly that six months after he is all done, it may reverse. For now, the pupil in his right eye is larger than the left and misshapen, which causes his iris to be misshapen. Neither are a big deal, just something that would be noticed by his parents.
Next Thursday, Draven has a repeat MRI and hearing test at Devos. Then in March, he has his last round of chemo. He will still be coming down to Grand Rapids every month, at least through the summer for continued procedures on his right eye. Next Friday, he also has an eye appointment in Traverse City to strengthen the muscles in his right eye.
Again, Andrea and Kevin are so thankful for your continued concern and support. Thank you!!!
Andrea and Kevin are down at Devos with Draven now, but they did send an update. The chemo has been working! The tumor in Draven's right eye is now only 1/10 of what it was. There is some concern, however, that there has been some growth in the middle of it, going both in and out of the retina. Draven will have both cryotherapy and laser photo coagulation on the right eye as well as cryo on his left eye. He will now have those localized therapies every month in conjunction with the chemo. The doctor wants to get to 28 months of age because after that there usually aren't any new tumors but he will be monitoring for new ones when he does the local therapies. Then from 28 months to 5-years-old, Draven is at risk of old tumors starting new growth. All of this is because in a couple of months Draven will be done with the chemo and he won't have that helping him anymore.
Draven's retina has totally reattached, too! More than likely he will have loss of peripheral vision out of his right eye. The doctors are 98% sure that he will have completely normal vision in his left eye. But he is still not out of the clear for him keeping his right eye either. The doctor has indicated that it is a "wild card".
Finally, Draven will need to go back to GTOC in TC for amblyopia training, either a patch or glasses but probably a patch. Next time Draven is seen at Devos, his twin sister (Joslyn) will need to come back for her exam since she is of the age for this cancer to occur.
Draven had a rough day yesterday but is back to his usual sweet self today. I have added 3 new photos: Draven practicing an eye gouging technique on his daddy, one of him reading about Dora and Diego, and another one of him looking like such a cute little peanut with flushed cheeks.
Andrea and Kevin would also like to express their appreciation for everyone who attended the benefit hockey game this past Saturday. They were definitely overwhelmed by such a large showing of support. Please continue to keep Draven and his family in your thoughts and prayers.
Just a reminder that the First Annual Guns and Hoses Benefit Hockey Game is happening this Saturday, January 18th, at Centre Ice. Area law enforcement will square off against local firefighters/EMTs. Silent auction (great items!!!) will be at 7:30pm and puck drop at 8:15pm. $5 suggested donation for admittance. Lots of family fun and all money raised goes toward Draven's family. Hope to see you all there!!
Due to multiple inquiries about making an online donation and the continued need by Draven's family for additional funds, the online fundraiser has been opened up again. We will leave the fundraiser open for financial contributions until January 31st. Please share this site (https://www.youcaring.com/DollarsForDraven) with everyone you can and please continue to keep Draven in your thoughts and prayers. Thank you!!!
Andrea, Kevin and Draven wish you all a happy New Year's Eve from Devos! Draven's platelet count had improved enough for him to get chemo (although it was pushed back a week). While there this week, he was not hydrated enough so his chemo was delayed a bit but it is started now and they should still be on track to come home late tomorrow to spend the first day of 2014 with their other children. Again, than you for the positive thoughts and prayers for Draven and his family!!!
Draven has had a slight setback in treatment. His platelets are not at the level they need to be to get his next scheduled chemo treatment. His doctors have pushed back his next treatment a week to give his platelet count time to improve. His decreased count is not so severe that he needs a platelet transfusion but just some extra time to get back to where he needs to be, which is expected.
Please continue to keep Draven and his family in your thoughts and prayers. Andrea and Kevin are so thankful for your support and they hope you have a wonderful holiday season!
Amazing! This online fundraiser ended tonight and earned a whopping $21,200...thanks to all of you!!
The La Senorita fundraiser from earlier this week brought in almost $900 and the Willow Hill fundraiser tonight earned just under $9,000!!
Andrea and Kevin are so incredibly thankful and overwhelmed by such a show of support. I will continue to post updates on this site from time to time to keep everyone in the loop of Draven's progress and any other fundraisers. Our next scheduled fundraiser is the 1st Annual Guns and Hoses benefit hockey game on Saturday, January 18th. Hope to see many of you there!!!
And so we have now entered the last 10 hours of this online fundraiser. Andrea and Kevin couldn't be more appreciative of the over $20,000 donated to support Draven's treatment-related expenses! Thank you!!! Just a reminder that the "Dancing with the Dunklows" event is being held TONIGHT from 5:30pm to 8:00pm at Willow Hill Elementary School. Please join us there!!!
I have uploaded a video from TV 7&4 News, which ran a story tonight on Draven. What an amazing thing to have that kind of coverage of his story!!
Also, just a reminder that tomorrow is the LaSenorita fundraiser (coupon has been uploaded on this page or you can contact me to get a copy emailed to you) and Friday is the fundraiser at Willow Hill Elementary. We hope to see many of you there!
Andrea and Kevin are so very thankful for all of the kind words, warm wishes, thoughts and prayers, and monetary donations that have been sent their way. We only have 3 days left for this fundraiser and even if we don't make the $25,000 goal, we certainly surpassed the original $10,000 goal. Again, thank you!!!!
Draven is back down at Devos getting chemo this week. He is tolerating it well but is exhausted from being woke up for the chemo and nursing checks. All of his siblings, however, were able to go down for a day to see where their brother gets treatment. I have added four new photos: Draven sleeping and snuggling with his mommy during chemo; his first carousel ride; the whole family meeting Santa; and Draven with his super nice clinic nurse, Christina.
We are down to one week left to meet the $25,000 fundraising goal. Please share this with everyone who can in these last 7 days and please continue to keep Draven in your thoughts and prayers. Thank you again to everyone who has been so supportive of Draven and his family!
We're using VolunteerSpot (the leading online signup and reminder tool) to organize our upcoming activity.Please sign up for Dinners for the Dunklows - here's how it works in 3 easy steps:
1. Click this link to go to our invitation page on VolunteerSpot: http://vols.pt/zyNdeM
2. Enter your email address: (You will NOT need to register an account on VolunteerSpot)
3. Sign up! Choose your spots - VolunteerSpot will send you an automated confirmation and reminders. Easy!
Note: VolunteerSpot does not share your email address with anyone. If you prefer not to use your email address, please contact me and I can sign you up manually.
Come eat at LaSenorita (US-31 not Garfield) on Tuesday, December 10th, from 11am to Midnight and a portion of your paid bill will be donated to Draven. Must have coupon (see photos for a copy). If it works better for me to email the coupon to you, please email me at firstname.lastname@example.org.
Another exciting event has been planned to benefit Draven, the first annual Grand Traverse Guns-N-Hoses Benefit Hockey Game. Local law enforcement will square off against local Firefighters/EMS to raise money for the Dunklow family at Centre Ice Arena in Traverse City, on Saturday, January 18th, at 8pm. Admission will be $5.00 per person (donations also
accepted). There will also be a silent auction. All proceeds will be given to the Dunklow Family to help cover expenses.
We hope you will all join us at this special event. Thank you for continuing to keep Draven and his family in your thoughts and prayers. And please keep sharing this page so we can hit our $25,000 fundraising goal!
For more information about the benefit hockey game: https://www.facebook.com/events/775006392515309/
Willow Hill, the school where Andrea and Kevin's kids attend, is hosting an event called "Dancing with the Dunklows". It will be held on Friday, December 13th, from 5:30pm to 8:00pm in the Willow Hill gym. There will be a dance and a silent auction as well as food and beverages for sale. All donations at this event will benefit Draven. This is the event link on Facebook:https://www.facebook.com/events/233095113518960/?source=1
For those of you who don't feel comfortable providing an online donation, Draven's parents have set up an account in his name at Credit Union One, located at 1202 Veterans Drive, Traverse City, MI 49684. You can mail or drop off donations there.
Finally, you may have noticed that we have upped the fundraising amount to $25,000. We still have over 20 days to raise those funds so please keep the momentum going and share this with anyone you can. Thank you so much to everyone who has donated and/or kept Draven and his family in your thoughts and prayers!!
Two family photos have been added (photo credit: Photography by Scarlett). Also, please see the message below that Andrea and Kevin wanted given to all of you.
If we had a flower for every person who has shown support for Draven and our family, we would have a garden to walk in forever.
Thank you for your love, generosity and continued support.
Kevin, Andrea, Jalee, Dylan, Jackson, Draven, and Joslyn
Draven was discharged from Devos yesterday, as he has tolerated the chemo well so far, and is now home in Traverse City enjoying some private family time. The road is long, however, for his treatment. He will be admitted to Devos for every chemo treatment, which is 2 days long, but will entail at least 3 days of admission. This is every 3-4 weeks but will depend on his counts from lab work that he will have done at least twice a week. He needs labs because of the chemo and the shots that his parents will be giving him every other day. After three chemo cycles he will have cryotherapy of both eyes under sedation. He will also be having MRIs under sedation every 3 months.
Please continue to keep Draven in your thoughts and prayers. And please keep sharing the link to this page. Thank you!!!
Draven is tolerating the chemo well so far. A couple more photos were added from today...one in which he is coloring a picture for sissy and another one with his pretty doctor who is going to make him all better. Please keep sharing this link as well as keep Draven and his family in your thoughts and prayers. For those who aren't comfortable making a donation via online transaction, we will have information coming soon about where to send a check locally. Also, we will keep you informed on some local fundraisers being planned in the community! Thank you again, everyone, for your care and support!!!
Draven's port was put in today without a problem and he began chemo tonight at 9pm. His next treatment will likely be tomorrow night. I added a couple of pictures of Draven out for an evening stroll with his parents.
I can't believe we have over $9,000 in donations in just 4 days. We still have almost a month to go in fundraising so I am raising our goal to $15,000. I know $10,000 seems like a lot but with treatment for Draven expected to be at least a year or two, Andrea and Kevin can use all the extra money we can raise for them.
For those of you who have already donated, my sister and Kevin are so very thankful. Please continue to keep them in your thoughts and prayers. And please keep sharing the fundraising link. Thank you!!!
Just posted some pictures of Draven from Devos! He is shown in one with a therapy dog that he interacted with last night. The other photos are from his "free" day today...putt putt golf in the library, watching cars go by this morning with his daddy, talking to sissy on FaceTime, eating a flurry, and snuggling with his mommy while they went for a walk. :)
Draven will be getting his port tomorrow at 3pm and will begin chemo treatments tomorrow night. Please keep him in your thoughts and prayers.
Great news! Draven had an MRI done today and no tumors were found in his brain. Andrea and Kevin can now focus on treatment options knowing that the cancer hasn't spread. We are also amazed by the generosity of so many people who contributed to raising over $4000 in less than 24 hours for Andrea and Kevin. Please keep sharing the link so that we can hit the goal of $10,000. Thank you!!!!