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, 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

Tuesday, 9/2 update from Mom

I was so exhausted Thursday evening, that I did not go into the fun details about our trip to Boston. He did great during the Dr.'s visit, and interacted well with the staff. One of the nurses got a love swat on the bottom!! It caught us all off guard, but thankfully the nurse was cool about a kid being kid. lol I think the best part of his day was his ride on the train! Oh, if you could have seen his happy face...it was beautiful.

He likes being involved with his tubie ( central Line) . He helps the nurses with his flushes, and loves to be part of his blood draws. His central line has been a friend to him. He proclaimed to Auntie Leah, " I get no more shots, because I have a tubie!". He said that right before we went to his next Dr's appointment.

We had a 1:30 p.m. appointment that day, for counts and a new med. 24 hours after his last dose of chemo his neupogen is started. This is the medicine that helps boost the production of his white blood cells. This med can be given through IV ( which we chose, because it is less invasive to him), or subcutaneous ( just beneath the skin). Dr. Shustermann strongly recommended that at least for this cycle we administer it sub q. Because his stem cells are to be harvested during this cycle, she wants to insure that the harvest will be successful. The neupogen is more effective given sub q. When it goes directly into the blood stream it leaves the body much sooner, as opposed to under the skin where it needs to be absorbed into the blood stream.

That afternoon a mini catheter, had to be inserted into the back of his arm. We call it his baby tubie. Its pretty much what they do for an IV on your hand, but smaller. It made for a difficult office visit. He never wants to go in the dinosaur room, ever again!!!! Its always been a complete hold down when needles are involved. He understands now that the "baby tubie" gets the needle and he only feels the medicine. Can I please say it again....he's been a brave boy!!

Even though this life experience has forced him too grow up quickly, he sure loves to play! I tell you when I say he lives on his bike...he lives on his bike. He loves his siblings, his cousins, and the park. The silliness, the laughing.... we are enjoying it all.

We did take a trip into Hartford today for counts. All looks well. His ANC count appears to be on the rise already, so we are sort of "on call" for our Boston trip. Please pray for there to be numerous and many healthy, cancer free, young stem cells for the harvest.

Saturday, 9/6 update from Mom

Although it appeared that Blake's counts were on the rise from his Tuesday counts, he still needed to go in for another transfusion on Wednesday. This time platelets were needed as well. These allow the blood to clot. It helps the body to stop from bleeding. He had some bruising, so it was no surprise that his platelet count was down this time around.

A platelet transfusion is a little different than a blood transfusion. It only takes 30-45 minutes to receive platelets, as opposed to a 3-4 hour duration to receive blood. Its a peachy colored liquid, that comes in a smaller amount. Although they hang the bag on the IV pole, it is not hooked up to the IV pump. The pressure would crush the platelets. All in all it was a good office visit. He was given a smaller dose of Benedryl. It was enough to keep the hives at bay, yet didn't put him into a deep sleep. I usually leave with a physically exhausted little boy, just waking out of hibernation.

Our Friday appointment was a challenge for him. The baby tubie in his arm needs to be replaced every 7 days. Yes, it involves a "poke". I'm always very honest with him, about what each Dr. visit will mean for him. He knew what the visit was to entail, but no amount of pre-teaching can remove his fears. The thought of the needle gets the best of him every time. Oh he gets MAD! We love our sweet, feisty little boy!

Tuesday, 9/9 update from Mom

Our trip to Boston was successful. They needed to retrieve 5-10 million of those CD34 cells, and they counted 8 million! yeah! It was a long day so I was relieved that we didn't have to return a second day for harvesting.

Blake enjoyed the Ronald McDonald House. The playroom that had been fashioned for the children was remarkable! It had a chalkboard wall, mini pool table, games, and toys! At the end of it all, Blake just wanted to come home to see Daddy and ride his bike.

Wednesday, 9/10 update from Mom

We have an appointment Thursday for an injection (dye) from nuclear medicine. He needs this injection 24 hours before his MIBG scan. The purpose of this scan is to look for cancer cells. The cancer cells will hold onto this dye, unlike the healthy tissues that release it immediately. The dye has some levels of radiation, so Blake needs to take potassium Iodine drops prior to the injection to help protect his Thyroid.

This is the test we've been anxiously awaiting. It will give the Dr's a good idea of how effective his chemotherapy has been thus far. Any of you that have seen him recently can testify that he looks great!!! We're hoping that the scan shows his insides looking just as great!

We are on the schedule to start his 3rd cycle of Chemo this Friday. It will be different drugs, and the method and schedule varies a little as well. I'm a little apprehensive, as to his side effects this time around. The Cytoxin and Topotecan used in the first two cycles are known to be highly effective with little side effects. I have been told that his subsequent treatments may present a bit more of a challenge for him.

SUNDAY, SEPTEMBER 14 - update from Mom

It's always a little bit of an adjustment for Blake every time we return to the hospital. He had a difficult time accepting the Foley catheter. It's a bit cumbersome, along with the tubie and IV pole. He's moving around a bit more today than Saturday. He enjoyed his visitors today! He's pretty tuckered out, and is already asleep.

The main reason for his catheter is because of the Cisplatin. Both the Cisplatin and Etoposide have the typical side effects of a chemotherapy drug, but the Cisplatin is rough on the kidneys. An accurate I&O is important for monitoring his kidney function. The Dr. wants the urine to continually drain to avoid any irritation to the lining of the bladder.

MONDAY, SEPTEMBER 15 - update from Mom

Blake's having a hard day today......He has vomited a few times...hasn't been able to eat or drink anything ( his choice). The nurse has given him a combo of Reglan, and Benadryl. Its mellowed him out, but he continues to have dry heaves.

He told me this morning that he felt sick ,and wanted someone to pray for him.

He's looking forward to seeing Daddy today!

TUESDAY, SEPTEMBER 16 - update from Mom

It would be nice to report that his nausea is gone, but he began to vomit again this morning. The Chemo did hit him harder this time around. He hasn't eaten or been able to keep anything down since Sunday night. His last dose of Chemo for this cycle was given last night at 1a.m. Things should start turning around for him by tonight.

I'm glad the plan was too stay through Wednesday morning; he wouldn't have been ready to be discharged today anyway. I've heard that sometimes patients go home with hydration (IV fluids). I wonder if that might be a consideration for him this time.

Please continue to pray that he remains in good spirits, until his appetite returns.

I did receive preliminary results form his bone marrow test......so far its showing a significant decrease of neuroblastoma cells!!!! Dr. Altman will be by later when the final results come back.

SATURDAY, SEPTEMBER 20, 2008 03:43 PM, CDT

Happy Weekend!

Blake is hanging in there...he is on the cusp of being able to hold down his nutrition. He's happy, and wants to eat, and play with his siblings. We are anxiously awaiting for his full appetite to return, as he has lost 3 lbs. this past week.

Believe it or not, he did not need a transfusion yesterday! We did need to stay, so he could get some hydration. His sodium level was low, due to his vomiting. His counts have not dropped yet, but they should.

As much as we look for his counts to "recover"; we anticipate for them to drop as well. If his counts didn't drop, it may indicate that he didn't get a high enough dose of chemo. Everything is watched so carefully. The Dr.'s and nurses don't miss a thing. Blake is certainly receiving the best care ever!

SUNDAY, SEPTEMBER 21, 2008 07:58 PM, CDT

Its been an up and down kind of weekend. We keep thinking he's on the mend, but then he vomits again. We feel bad for him...his energy level is down, and frankly, his spirits are down as well. This has been a tough cycle for him.

His sweetness remains the same. A few times this weekend he has said, " Lets pray for that little boy from the Doctors, that looks like me, because he's not feeling good."

We have an appointment tomorrow morning. I know we are there for counts again, and to re-evaluate his progress or lack of... I suppose? Not that I want him admitted again, but I don't want to bring him home with out another "plan" in place.

TUESDAY, SEPTEMBER 23, 2008 01:55 PM, CDT

Yesterday was a good day at the clinic. We met another great family, trusting in God to help them through this journey. Its very encouraging to meet family's that have just been down the same path, and are reaching for the same goal....Full Remission for their child!

I learned a lot about this cycle Blake is in. The cisplatin is one of the toughest chemo drugs, that he will be on. He'll receive it again during the 5th cycle. Although he seemed to be struggling, he was actually doing well under the circumstances. He maintained his weight since Friday, his magnesium level was right on, and the nausea/vomiting has been intermittent.

So far, so good today! We are definitely avoiding any car rides....that seals the deal. Thank you for all your words of encouragement!

WEDNESDAY, SEPTEMBER 24, 2008 12:19 AM, CDT

He finally did it! He made it through 24 hours without vomiting. What a good boy! It was a week ago Sunday that his nausea/vomiting started up. He was trying so hard...only eating small amounts, drinking a little at a time. He was very happy for himself.

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.