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 update from Mom

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 update from Mom

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 update from Mom

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 update from Mom

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.

December 4th

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!

SUNDAY, DECEMBER 07, 2008 update from Mom

Thank you for all your prayers! I feel confidant that tonight will bring some needed rest for the little man. His pain is being managed with Dilaudid, which we will continue through the night. It'll be reassessed in the morning. He even took a few steps tonight. Of course it was all with great protest, and I can't blame him!

SATURDAY, DECEMBER 13, 2008 update from Mom

It was a short visit home, but awesome to be there!! We didn't even really fully unpack....then we were back to the clinic Thursday afternoon! After being admitted, I was able to speak with the Dr. and APRN about what's to come now that we are almost done with Chemo.

We are trying our best to manage his nausea and vomiting....poor little guy, he's having a hard go at it : ( Usually it takes him more than 24 hours to begin the vomiting but the chemo was up at 1a.m. and by 9a.m. it began. He was angry when he realized there were chemo bags hanging on his pole. He said "Oh no, I don't like the chemo - it makes me throw up!" He was very emphatic about it.

FRIDAY, DECEMBER 19, 2008 update from Mom

The kids are loving the snow!! Adam especially! I wish Blake was excited for the snowy weather. He is still not himself yet. He is definitely making gains, but they are baby steps.

His counts were fantastic yesterday! We're thankful that his vomiting has just been off and on. This past month really has put him to the test. He didn't get back up to that 36 lbs. after the 5th round of chemo. The surgery really sent him for a ride! Then he started his last cycle already very weak, and weighing in at only 33 lbs.

FRIDAY, DECEMBER 26, 2008 09:05 AM, CST update from Mom!

Merry Christmas!

We received the best gift ever yesterday. Blake finally stepped out of the slump he was in!! After I wrote last Friday, he took a step back over the weekend. He had lost another pound and didn't want to eat. We were not sure what was going on with him, so we headed to the clinic right away Monday morning.

It was good that we went, because he was needing a platelet transfusion. We also explained to the Dr. that he could not keep the antibiotic down. This antibiotic was to clear up the GI upset he had during our last hospital stay. It seemed likely that the C-diff was still in his system, probably adding to his loss of appetite. It was decided that we would try a different antibiotic.

The new meds must be doing its job! Yesterday, after having a few bites of Ham, he then requested a PB&J! He has already had a full sippy and a full bowl of Cheerios this morning :)

Santa was very good to Blake and his siblings....and he is playing his little heart out at this very moment.!!

We truly hope every one had a wonderful and blessed Christmas! This has been a year of transition for many of us.

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. : )

THURSDAY, MARCH 05, 2009 07:17 AM, update from Mom

Hi Everyone!

We heard some fantastic news yesterday! Blake's MIBG scan show's he is still moving in the right direction! The same areas are there from the last scan, but the uptake has decreased. I guess that spot in front of his left kidney was a little smaller too! We are very thankful, and hopeful as we move towards transplant.

When we get to Boston, Blake will need to remain in his room for 7 days. This is too protect the other children already there from catching any possible germs that have not emerged yet. On day 2-6 he will get some chemo to prep his body for the bone marrow. These doses will be much greater in intensity. Basically the goal is to wipe out any remaining cancer in his body.

The chemo will be hard on his organs, but he will be monitored very closely at all times. Now this process of wiping out the cancer, also wipes out the spongy bones ability ( the blood factory) to produce the young blood cells (stem cells). This is where the bone marrow transplant comes in to play. 48 hours after his last dose of chemo, his bone marrow will be introduced back into his system via his tubie. Amazingly enough it will seem just like a blood transfusion! They will hang his special bag of blood with the multitude of stem cells ( baby blood cells). What's even more amazing is the stem cells know where they are supposed to go and know what to do. So we wait....

During this wait, Blake will probably need transfusions every day until his bone marrow grafts to his own body. This may take 12-30 days. Since he is his own donor, it may be closer to 14 days. Blake will not be feeling well during this process. We need everyone to pray for Blake's strength and safety through this transplant process.

In the meanwhile, please pray for our whole family to remain healthy during this time. Chris was hit hard with a fever and cold, Blake has had a cough for a couple of weeks, and Adam just threw up last night a couple of times,,,Whew!! Chris and I can not be on the transplant floor with Blake if we are not feeling 100%!!

I believe we go to Boston this Monday....I'll let you know when we get confirmation of that departure. Thank you for your continued prayers, thoughts and love!!

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!!