Help Blake's Family

Blake is your typical 4 year old boy. Although he loves his Daddy, he wants to grow up to be just like his big brother, Nick. His cousin, Brady, is his best friend. He was looking forward to starting pre-school this September but sadly, that will have to wait because of a new journey that has been placed before him.

He became noticeably cranky and irritable in the middle of June. By the end of June he started complaining of leg pains which we attributed to typical childhood, "growing pains". By July 4th, it became clear that these pains were occurring more frequently and it was time to take him to his pediatrician.

His doctors were great. There was much care, concern, and follow-up. Unfortunately, the Lyme tests came back negative. Within ten days, his leg pains were waking him up at night. He also started experiencing low back and hip pain as well. With our pediatricians guidance we moved forward to try and figure out what was wrong with our, Pooh Bear.

On Thursday, July 24th, 2008, we brought Blake to the oncology department at Connecticut Children's Medical Center. By the end of the day, we were lovingly told that Blake probably had Neuroblastoma. After a few more days, and many more tests, it was confirmed that Blake did indeed have, Neuroblastoma, stage IV.

~ by Mom, Renee Roy, LMT

Summary by Mom on 11/20/08

Our son Blake was diagnosed on July 24th of this year with Neuroblastoma. The mass could not be palpated because it was deep within the abdominal wall. He seemed a little less energetic, and a little more cranky going into May. Throughout June he was experiencing some off/on leg discomfort. As the 4th of July weekend approached, his leg pains were clearly not growing pains. By this time, his appetite had decreased, and we brought him to our Pediatricians office.

Our Pediatrician agreed that something was causing his weight loss, loss of appetite, and leg pain. We started with some blood tests, and began ruling things out. Unfortunately, the tests were coming back negative. Our pediatrician was very intuitive, and was also checking Blake's DH levels, a marker for the body's general inflammation level. The increase there was significant enough for the Oncology Doctor at CCMC (CT Children's Medical Center) to have us come in the next day.

That next day, it was all we could do to hold ourselves together for Blake's sake, as he was poked and prodded...he was scared. He had x rays, an MRI, cat scan, and a bone marrow aspirate all in one day. It was enough for Dr Altman to suspect that we were probably dealing with an aggressive case of Neuroblastoma. No parent could ever prepare themselves for a diagnosis of such magnitude!

Since that day Blake has undergone 5 cycles of chemotherapy. It has not been an easy road for him. We had some great positive news when they re-tested for the disease after his 2nd cycle. All the tests concluded that there was a significant decrease with the disease! Initially, his bone marrow was saturated with the cancer cells, but now there are only traces to be found. Dr Altman was pleased with the results, but said Blake still had a lot of work to do. The mass itself had only shown a 20% decrease of cancer cells.

While the cancer cells are being destroyed, healthy cells are hurt as well. With the damage of healthy cells, come side effects. One major side effect is low blood counts. It is normal for blood counts to drop anytime after 7 days from time of treatment. When the red blood cell counts comes down it causes anemia. More specifically its from the hemoglobin levels. Hemoglobin supplies needed oxygen to the body. A normal hemoglobin is anywhere between 12-16. When Blake's levels reach between 7 and 8 he receives a blood transfusion. He has had 15 blood transfusions so far. Its amazing how much better he feels after a transfusion. We are very grateful to the Red Cross and all those who have taken the time to donate their blood. His treatments would not be successful with out the transfusions.

We are nearing the end of the first phase of his treatment. He has tentative surgery date for Dec 4th to have the mass removed. He then needs to undergo one last cycle of chemotherapy. We are expecting to be home for Christmas. If all goes according to plan, We will be headed to Dana Farber in Boston for Blake to undergo a stem cell bone marrow transplant. I'm sure that during this time he will need numerous transfusions while his blood cell production is suppressed. He will be his own bone marrow donor. It will be a 6-8 week stay. He will most likely be in home isolation for an additional 3 months. During this time he will need to have radiation. Ideally this should be his last phase of treatment.

I'm not sure of all the details for our Boston trip, but we may be going up for a couple more short trips prior to the initial transplant. We generally handle one cycle at a time, and right now our focus is his chemotherapy.

This has been a true test of our faith. During this time we have been surrounded with love and support from not only our own friends and family but an outpouring of concern from our community.

December 4th, 2008

Blake was in surgery from 10am - 7:30pm.

THURSDAY, DECEMBER 04, 2008 update from Mom

The surgery was finally over at 7:30p.m. Praise the Lord! It was very successful! We spoke with Dr. Weiss after the surgery, and they were able to remove the final remaining tumor. It took a long time, but it was worth the wait! Truly, Blake is right on track with where they want him to be in his treatment.

He was very distressed, as he was waking up, and couldn't speak, because of the ventilator. He showed great content with being able to hold our hand, and his yellow, spider man blanket, and happy dinosaur, just sealed the deal. He is sedated, and resting peacefully.

Chris is sitting up with him for the first part of the night, while I get a little rest. I'll explain a little more of what happens in the PICU, and when he might be able to return to the 8th floor.

Thank you again for all you love and prayers....this is truly a day of great joy for Chris and I!

FRIDAY, DECEMBER 05, 2008 update from Mom

Its my turn to sit with Blake : ) Chris did say that Blake struggled for a little bit....He still has restraints to prevent him from pulling out the breathing tube. I wish we could pick him up and cuddle him with his blankie.....soon : )

FRIDAY, DECEMBER 05, 2008 update from Mom

Blake had his breathing tube removed around 9a.m. It was uncomfortable for him for a short time afterwards. Of course as always, he was made as comfortable as possible. Putting a Disney movie in was a great distraction, and he settled in nicely.

He is not under sedation anymore. The epidural in place is keeping him comfortable. Little by little the tubes and wires are being taken away. He will be watched closeness throughout the day. Dr. Weiss thinks Blake looks great!

WEDNESDAY, FEBRUARY 25, 2009 update from Mom

Blake has seen a lot of CCMC( CT Children's Medical Center) the last couple of days. Monday was an early day as I had to get him to day surgery for a new tubie placement (CVAL). He also had the TEE repeated, to check out the endocarditis situation. Thankfully it all looks great! His new tubie looks fantastic! I think I am more excited to have the old tubie back than he is. He didn't like it at first, he said it was too long. But for all purposes, it flushes nicely, its easier to access without disturbing him...you get the picture. : )

Monday turned into a long day because he was just sleeping away after his anesthesia, then he had a post-op cough that needed to be monitored. I then took him up to the clinic for counts, but before we scooted out he spiked a fever! I was glad it happened at the clinic, otherwise we would have been at the ER that evening for antibiotics!

Tuesday was just busy with the pre-transplant appointments. He was definitely feeling much better and hamming it up with the nurses, and Dr.'s. One last bit of information for you....Boston is delayed. There was mix up with his MIBG scan for tomorrow, which now is scheduled for next week sometime. Chris and I were disappointed at first, but truly God has his timing all in place. : )

TUESDAY, MARCH 10, 2009 12:05 PM, update from Mom

Boston DAY -7

Yes, its negative 7. His count down starts at negative seven until day 0. Day 0 is transplant day!

We had good traveling yesterday. Although my emotional roller coaster was in high gear, the day went smoothly. Even Blake had some nervous energy, and began testing his boundaries with myself AND the nurses! Blake has settled in nicely. Thank you Auntie Sharla for traveling with us,and helping us settle in.

Last night he wanted to go back to his hospital (CCMC). This morning he had a change of heart. He said," that's o.k. if we stay here for a while". Once he realized there was a list of movies, fun nurses, and lights on the ceiling that changed colors, it quickly changed his tune!

The nurses keep losing him.....the search is so exhausting they decide to rest on his pillows, which in turn begin to giggle LOL : )

Seriously though, his chemotherapy started this morning at 10:30. He'll be receiving Carboplatin, Etopiside and Melphalan. Just like the other rounds of chemo we will watch him closely and help to minimize his side effects as they surface.

Blake and I will miss our friends at CCMC, but I expect to have a positive experience. Everyone we have met so far have been so wonderful!

Please continue to pray for Blake's transplant to be a success!!

WEDNESDAY, MARCH 11, 2009 10:51 PM, update from Mom

DAY -6

Here's Blake's address:

Blake Roy, 6 West (room 602), c/o Children's Hospital, 300 Longwood Ave , Boston, MA 02115

Blake did tell me today that he wasn't feeling well, but nothing that's knocking him off his feet yet. I was talking to another Mom, and have heard that the Neuroblastoma kids have a record of doing well during transplant! That was very encouraging for me! But trust me, I've learned my lesson to take this one day at a time:)

Besides the 3 chemo drugs, he is on a handful of other stuff too. I just counted, he has 6 IV bags hanging!! He's still mobile though; moving around the room like a pro! A lot of the extra meds are profalactive. He had a cough and sinus thing upon being admitted, so there is an antibiotic for that. It will also cover the possible endocarditis that he had. There is a med to protect his Liver. Another med is to help his body make antibodies. Lastly, he is on an antifungal to help fight a variety of yeast infections. Whew!

They really have thought of everything. They run a tight ship here on the transplant floor! Of course every thing has a reason, and it makes sense too. During transplant, every thing possible is done to prevent him from any unnecessary exposure to bacteria.

Blake and I miss the family, and look forward to seeing Chris and Nicolas this weekend. : )

FRIDAY, MARCH 13, 2009 07:40 AM, update from Mom

DAY -4

Blake is still sleeping and I wish him much rest! Yesterday, the chemo finally caught up with him. It was a general all over not feeling well, but I am very happy to say his vomiting has been minimal...he hates that!!!

The Dr.'s come around every morning, and check him over; so far so good with their expectations of his health during transplant. Blake did get out of bed so he could see Lauren and Daddy on the web cam, but that only lasted a few minutes. He did not eat anything yesterday; loss of appetite was inevitable. At some point they will start him on IV nutrition.

SATURDAY, MARCH 14, 2009 02:15 PM, update from Mom

DAY -3

Blake was very happy to see his Daddy and his brother Nick today!!