Stem Cell Transplant Day “Re-Birth” Day – April 23rd
Exactly 6 months ago on October 23rd, we were admitted into the hospital after receiving the worst news of our lives as Nicholas was diagnosed with Cancer! Today, 6 months later, Nicholas celebrates his "re-birth" day! They consider this a rebirth since you now have received brand new blood and considered to be a brand new person!
Before receiving his Stem Cells, Nicholas made a poster to put on his door! The poster said something like this: “I am a Star, I am a Warrior”, “New Blood, New Beginnings”, DIE CANCER DIE! He was so proud of his sign that he wanted it hung up on the outside of his door so all the doctors, nurses and patients would see it!!
And there you have it! Happy Re-Birthday my son! Nicholas received about 4milllion cells back into his little body, out of the 8million they harvested back in January. During the actual infusion, the associated smell is awful!!! He ended up vomiting from the infusion, which is normal due to the chemical that is placed in with the cells to help preserve them. The positive side to this is the infusion only lasts about 3 minutes and then its over, including the vomiting and nausea feeling. It sort of smells like creamed corn, yuck! As always, Nicholas handled it like a champ!
Philadelphia Here we Come…Stem Cell Conditioning – April 15th – April 22nd
Nicholas asked us if we could arrive the night before he was scheduled to go into CHOP so he can spend a night with us in the hotel that we will be staying at. We thought it would be a great idea so Nicholas can also see where we are going when one of us leave him at night. He also loves hotels! We ended up having a fun night hanging out in our hotel room, relaxing, playing Xbox and watching TV. All three of us slept in the king size bed with Nicholas in the middle.
The next morning, our appointment was scheduled for 8am for his Broviac insertion procedure. He was put under by means of sedation and all went smooth. He is a bit out of it and tired, but definitely was in good spirits. The nurses so far have been exceptional. Nicholas first chemo medication was scheduled to be infused at 2 AM in the morning and will get chemo every 6hrs with 2hour infusions. The nurses informed us that most of the patients tolerate this chemo med pretty well for at least 4-5 days.
For the most part, Nicholas did great for the first 7 days of the chemo infusions. He did need a blood transfusion in the interim as his red blood count was a bit low. The nurses have been great and very helpful. We learned a lot from them and they are so very educated. All the nurses are always ready to explain things in full detail to help you understand the process. The precautions that are taken into consideration are pretty intense. Nicholas is on a low-bacteria diet, which consists of all the bad food you normally wouldn’t want your child to eat. If its frozen, in a can, sealed in a package, cooked thoroughly or frozen, then he can eat it. Anything fresh such a fruits or veggies, or anything like cold cuts or unpackaged is a big no-no since bacteria is present. It’s all about the preservatives all the way! Any food or beverage that is not consumed within 4 hours, must be thrown out as bacteria starts to grow. His bed sheets, pjs, pillow cases, blankets or anything soft and fuzzy, must be washed and recycled every 24hours. He must shower every single day with a separate body scrub 1/2 hour after the shower with a special medicated antibacterial pad. He has oral mouth hygiene 3 times per day to help with the forthcoming mouth sores. He gets PT and OT everyday to encourage muscle movement and gets him out of bed. We were also informed that once his blood counts flat line, he will be most susceptible to any infections, including all those that children receive vaccinations for since birth. Ironically, we were informed that all the vaccinations will be gone from his system and he will need to re-vaccine after 1year of transplant. It really puts into perspective what this really means.
Nicholas pretty much maintained his levels and didn’t drop much at all. His immune system was still going strong. As soon as the ANC drops to under 1000, the major infection precautions start taking place, such as wearing masks! Nicholas occupied this time with playing Xbox and texting all day long! Thank god for technology today! He loves to FaceTime with his cousins as he stays connected with them while we are so far away!
We were so happy to have had Zii Zii Teresa and Cousin Anthony come visit us from NY on Sunday and spent a night with us! Nicholas felt great and had fun playing with his “big brother!”
The next day, Nicholas was able to decorate his door window to make it his own. Mommy helped him out a bit, but all we can say is anyone who passed by our room had no doubt that we were from New York! Nicholas door consisted of NY Rangers, NY Knicks, NY Giants and European Soccer Teams! Anything to make him feel at home knowing that our stay is going to be a long one.
On the very last day of the chemo drugs, Nicholas levels were starting to show signs of dropping. His appetite had slimmed down quite a bit and not really eating much. His drinking ability was still here. The doctors were very happy with how he reacted thus far and he is on track. The Melphalan chemo drug was administered today. This is the drug that brings on the mouth sores. Tomorrow is the BIG day! Stem Cell Transplant day! It had now been 7days that we were here and still hanging strong. Nicholas was laughing, smiling, joking and you would never think he was sick!
Weekend Before Stem Cell Transplant – April 13th- April 14th
We had a great weekend! Nicholas was honored by the Glen Head/Glenwood Landing Baseball Organization at this year’s Baseball parade and opening ceremony into the new baseball season! Nicholas got to ride in the Glenwood Landing Fire Chiefs truck in the parade and at the opening ceremony, a beautiful speech from the Baseball Commissioner about the Pedone involvement within the baseball organization going back three generations. Nicholas was presented with a professional baseball signed by all of the organization members. After that, Nicholas was honored by throwing out the first pitch. He still has a great arm! He even got to throw a second one! It was so beautiful and touching. It was a special moment for us as we know that Nicholas involvement with sports this year will be slim to none. We are grateful to Ron for organizing this and making this a special moment for all of us. That same night, Nicholas had a sleepover with his cousins while Nick and I enjoyed a night out with some of our dearest and greatest friends!
On Sunday, we prepared and packed up for our trip to Philly. We had all of our closest family members over to give Nicholas big hugs, kisses and high fives as he will fight his next battle of Stem Cell Transplant. It was an emotional moment of course. Nicholas was feeling great, his appetite over the roof and so it was sad to know that this was going to come to a halt in the next coming days. We know Nicholas will do great! He is our little warrior and after this part is over, he will be a brand new person and hope that the little cancer left is gone and disappears completely and forever!
CHOP – Pre Stem Cell Transplant Meeting – April 12th
Our Pre-Stem Cell Transplant meeting at CHOP went very well today. We met with Dr. Grupp, Head of Stem Cell Transplant and he discussed with us thoroughly as to what we can expect, the medication regimen, risks and side effects. Dr. Grupp started by telling us that we were very lucky to have found Nicholas disease early on, since most of Neuroblastoma cases are usually in advanced stages of Stage 4. He stated that only 15% of all Neuroblastoma cases fall into the Stage 3 category and while Nicholas is considered High Risk due to his age and histology of the tumor; he falls in the bottom and lowest bracket of the high risk scale since he is Stage 3 and has no MYNC amplification. With this said, it was questionable whether or not Nicholas "really" needs a stem cell transplant. Dr. Grupp proceeded to tell us that with Neuroblastoma, we have only 1 chance to kill this monster and we need to attack it hard and fierce to make sure we get rid of it the first time. Because, should a relapse occur, there is no known protocol or cure and the odds are low. Relapse patients are basically treated with trials and studies. So, we must proceed with transplant and cannot have any regrets. He informed us that he will be using a 2-med regimen that stems from the European protocol, rather than the 3-med regimen from the US protocol. He felt the 2-med is better for Nicholas. He will be getting 1 whole week of chemo and then 7days later; his stem cells will be infused for stem cell rescue. There are many risks involved such as VOD, which is a toxic liver infection, multiple organs malfunctions, but these are worst case scenario, which they always have to tell you about. The common side effects are mouth sores, fever, weakness, low blood counts and infections. He told us this will be difficult to endure for him and for us as parents. This is the one thing we were not looking forward too. But for now we have a great weekend ahead to enjoy before moving to Philly for 4-6wks!
Feeling Good, Living Normal, Pre-Transplant Meeting – April 8th –
Not too much to talk about during this time, except that Nicholas has been feeling great and we have been enjoying watching him getting stronger day by day. In fact, he actually got some time to go to baseball and soccer practice! He had a great time with his teams! Nicholas lost a lot of school time this week due to all the pre-testing involved for preparation for Stem Cell Transplant. He needed dental clearance, Sinus and Chest CT Scan and Echocardiogram, all of which came out great and no issues.
We are heading to CHOP in Philadelphia on Friday to meet with Dr. Grupp as our pre-meeting to go over Transplant processes, the expectations, restrictions, rules and so on. We are scheduled to be admitted to CHOP for next Tuesday. We will be "moving" to Philadelphia for the transplant process with will be staying at a local hotel there so Nick and I can alternate nights. The benefit of not having any other children is that we can both be there with him during this treatment. Since we will be about 2 1/2 hours away from home, we will both need a place to escape and that will be a hotel. We feel it is important to remain mentally healthy and at least one of us get a good night’s rest, so the other can deal with the day to day trials and tribulations of transplant. They say the process can take anywhere’s from 3-6wks depending on the child's healing process. This is the one part of treatment that we have been dreading and it's finally here. So instead of getting emotional now, we are taking it one day at a time. Nicholas has another great weekend ahead of him and we plan to enjoy it to the fullest.
1st Annual “Nicholas Pedone 5K Run/Walk” – April 7th, 2013
An INCREDIBLE DAY in our beautiful city of Glen Cove, NY! An honorable mention to my nephew Anthony along with all of his student support and volunteers, today marked the 1st Annual "Nicholas Pedone 5K Run/Walk"! Anthony is a 17yr old student who, not only is a cousin to Nicholas, is like his older brother. When Anthony heard of Nicholas diagnosis, he was devastated. All he wanted to do was help. He with the support of some very good and special close friends, they were able to put together a walk of no other kind! The walked attracted 800 runners and 200 "Fun Run" children with a total of approximately 1000 people! Anthony was informed by the Finish Line Company, who was the official timing company for the walk, which the Nicholas Pedone 5K was the 1st walk in 10 years to have attracted such a huge crowd of people being our very 1st marathon. With this said our local streets were filled with and taken over by all of our supporters! After the run, they conducted the award ceremony to all top runners. It was then followed by the most beautiful speech from Anthony, who broke down when he referred to his cousin Nicholas and stated "When we are young, we are supposed to look up to our older peers as role models. For me, Nicholas is my inspiration. I wake up every morning for this little boy” It was a very heartfelt speech that brought us all to tears.
One of the greatest moments today is that Nicholas rode in the golf cart the whole course until about 100 ft before the finish line. He suddenly decided to jump off and run his way to the finish line! It was a priceless and emotional moment as all the people on the side lines were cheering him on!
We are truly grateful to Land Rover of Glen Cove who was the official sponsor of the walk, the City of Glen Cove for approving this walk with street closures, Glen Cove Police and EMS safety coverage, to the Glen Cove High School for allowing this walk to take place in and on school grounds, to all of the sponsors that helped make this such a huge success and to ALL OF THE RUNNERS/WALKERS whom without, this event would not have been possible. We were so amazed to see this community come together once again! We had local supporters from Glen Cove, Glen Head, Glenwood Landing, Sea Cliff, Locust Valley and Bayville to just name a few came together to show their support in honor of our Sweet Nicholas. Our community continues to demonstrate how much we are loved and cared for and that we DO NOT WALK THIS JOURNEY ALONE! The event raised close to $24,000 to go towards Nicholas’ recovery fund.
Nicholas Receives 1st Holy Communion – April 6th, 2013
A beautiful sunny day and a bittersweet day this was. To know that Nicholas was going to receive his First Holy Communion all by himself and that the 4pm Saturday mass was going to be extremely special was such a blessing and great feeling. However, the thought that Nicholas was not taking his communion with his class and other children all dressed up because he was going to be going through transplant at that time was a bit saddening for us.
Regardless, today, Nicholas looked so handsome…handsome than ever! The church was filled with parishioners and we were sitting up front waiting for this to all happen. We were honored by the presence of our closest family members and friends and even some of Nicholas school friends came to see him and support him on this unforgettable day. It was his very own special day. Nick, Nicholas and I walked down the gifts to the priest and Nicholas sipped the wine and ate the Holy Eucharist. After this was done, the priest made a special announcement addressing Nicholas and the whole church clapped. It was an emotional moment.
The day ended with a beautiful and delicious celebration with our family at our local Page One Restaurant. A special mention to Page One…they graciously and voluntarily sponsored our complete dinner that evening! We were deeply grateful for their generosity and support towards our family. Thank you Page One Restaurant!!!
We went home and were all so anxious for another exciting day tomorrow…the very first Nicholas Pedone 5K Run/Walk!!
Some Normalcy – School Time – Final Results - April 1st – April 5th
We were happy to see Nicholas better and able to get some school time in. Nicholas was excited to see his friends and enjoy being 7 again for a while. This week was pretty uneventful with a few clinic visits to ensure his levels are up to par.
We also were preparing for Nicholas 1st Holy Communion for Saturday! We had his suit brand new ready (thanks Zii Zii Teresa) and looking forward to this very memorable day followed by a dinner celebration with our closest family members at the local and wonderful Page One Restaurant.
So far our week has been a great one and we hope to continue this bit of normalcy until we know what's coming next. Until then, Nicholas will once again enjoy being a normal 7yr old boy doing what he is supposed to be doing, while we enjoy watching every minute of it!
We did receive final results: No 6th round of chemo needed, no 2nd surgery needed, bone marrow biopsy negative! Excellent and best case scenario for Nicholas so far, which means we are heading straight to CHOP in PA for his stem cell transplant. While this is a stepping stone and onto the next phase of treatment, this is also one of the most invasive procedures there are. Nicholas will receive the highest dosage of chemotherapy in only a few short days which will kill off any other cancer and faulty cells within his body. They will then inject him with his own stem cells that were harvested back in January to help his body and bone marrow build up and regraft new stem cells and improve his immune system. The grafting and healing process would take anywheres from 4-6 wks, depending on his body with the hopes of no complications. This means, 4-6wks in a hospital in PA. We will have our Pre-Transplant meeting at CHOP next week, with the intention of transplantation to be the week after.
But, before we head off to transplant, we were really excited about this coming weekend! Nicholas will receive his 1st Holy Communion tomorrow followed by a dinner celebration and a the first Nicholas Pedone 5K Run/Walk fundraiser is being held here in Glen Cove on Sunday which has already attracted over 600 participants and 50 volunteers and growing by the minute! What an incredible amount of support and turnout! So, we continue to take it one day at a time as these next couple of days are going to just be amazing!
Happy Easter! – March 31st, 2013
Nicholas was feeling great and getting stronger by the day and his appetite growing! Our Easter was great! We started off with an Easter Bunny basket full of goodies and headed off to church. Many community members were so happy to see Nicholas out and about! At the end of the mass, our priest, Father Elias performed The Annointing of the Sick Sacrament as he blessed Nicholas and cleared him of any sins. Since Nicholas will be unable to receive his 1st Holy Communion with his class on April 27th as we will be in transplant at that time, Father Elias graciously asked us if we would like him to receive his 1st Holy Communion this coming Saturday and we gladly accepted. Of course, it was a bittersweet moment, but we are all excited for him to receive this Sacrament.
The day continued with our Annual Easter Egg Hunt at Zii Zii Teresa’s house and our Easter Dinner with our Family! Nicholas had a blast and we were blessed to know that Nicholas was home able to spend this holiday with his family and cousins. The day was amazing!
Nail Biting Week – Body Assessment Testing – March 25th – March 30th
We were really happy to see Nicholas counts were up and rising which meant no risk of infection, allowed to be around people and going back to school next week! This week though was a nail biting week for us. We were scheduled for all of his tests; CT Scan, MIBG Scan, Bone Marrow Biopsiy and MIBG Part 2 on Friday. A big week for us as this was something we had been waiting for so long. Latest on Monday, we would soon find out how Nicholas has responded thus far to his chemo and what is next for him in regards to treatment.
After a very busy week with tests, an unexpected platelet transfusion and many phone calls, the test results were in: On Good Friday, brought us great and happy results! Nicholas had a CT Scan, MIBG Scan - a full body scan to detect NB activity and a bone marrow transplant. Based on the CT Scan - The residual mass that was left behind, approximated 50% of his original mass was not identifiable...which means, was not detectable with the CT Scan!!! This is great! The preliminary bone marrow results are NEGATIVE, final results next week - AMAZING! MIBG Scan - which highlights neuroblastoma activity detected 2 very small tiny areas within the original residual tumor site. This too was AMAZING! These 2 spots would most likely be killed off in transplant after the high dose of chemo he gets for this treatment. NO new spots or neuroblastoma were detected in his body anywhere else – also excellent! The doctors were beyond thrilled with Nicholas development and response thus far to chemo. We "almost" made negative results with only 5 rounds of chemo. Nicholas successfully responded to chemo!! Dr. Weinblatt will be speaking with Dr. Maris @ CHOP next week to discuss and evaluate Nicholas case. He will definitely NOT need surgery! Dr. Weinblatt seems very positive that we will be heading to CHOP for transplant without a 6th round of chemo. This will all be determined next week.
In the interim, the focus was to build Nicholas’ strength and weight to prepare him for transplant. While his results are amazing, Nicholas still has a very long road ahead of him...at least another 9-12mths of treatment if all continues to go as it has been. This disease is a complicated one and we need to take all actions necessary to make sure this monster is killed off once and for all and not allow for a relapse! We are so proud of our Little Sweet Warrior...he is such a fighter, a trooper, a soldier...and he continues his fight with all of his might with his army of people supporting him, praying for him and cheering him on!
We couldn’t be any happier with this news we received. We were very nervous, but had a "good" feeling all week long, knowing this all just happened to fall on the most Holy week - Easter Week! Today, Good Friday, We prayed that the Lord holds Nicholas and all of these other children who are fighting for their lives every day to hold them in his love & blesses them with His grace, on this Holy Day and every day after. May he continue to heal them and protect them as they walk this journey.
Palm Sunday – March 24th
Today is Palm Sunday. Although we didn’t go to church, we always celebrate the holiday being around our family. We were so happy to know that Nicholas was not hospitalized so we were able to spend Palm Sunday together with our family at Zii Zii Joe’s House! It was a beautiful day with delicious food and we were so happy to be out with Nicholas enjoying a family day together.
Still Recovering from Round 4 – March 18th – March 24th
Nicholas was still holding his own with this round. His appetite was returning very slowly. He wasn’t eating as we wanted him to, but we were starting to see the turnaround. He was still on home IV's, Anti-Biotics and Anti-Nausea meds. He was still taking the Flagyle for his C-Diff. Nick and I felt like we had become RN's now. We were on par with his med schedule, changing IV bags, switching to IV meds, flushing, disinfecting and we are up every couple of hours doing one of these things. Honestly, we would do it always if we could, as long as we know he is home in his comfort zone! They ended up increasing his C-Diff med dosage to treat it aggressively and try to kill it completely. He ended up with low platelet counts and needed a platelet transfusion. We are scheduled to go back to the doctors on Thursday, with the anticipation of needing a RBC transfusion, since those were dropping too. Since the MIBG scan will require Nicholas to be put under for about 3 hours, we needed his levels to stabilize before testing. We are hoping that this turns around by the weekend so his MIBG Scan, CT Scan and bone marrow biopsy can be done next week. Besides that...he is doing well, smiling and in great spirits
Today, being Thursday, was a very long day. Nicholas was at doctors all day today and got home about 7:30pm! His blood counts were low and therefore needed both a red blood transfusion and another platelet transfusion. In between these, he ended up with a reaction to the platelets and broke out with some hives and the transfusion was stopped. He then had to wait a while until the hives went down to restart the platelets. The red blood transfusion is always about 3-4 hour process. The doctors have tried really hard to keep Nicholas out of the hospital by allowing him to go home with IV fluids and all his other IV meds...this was successful and Nicholas remained out of the hospital (so far) since his last chemo treatment! Today, his WBC showed an uptick and we are on the turnaround where his levels are starting to go up. They took him off of the IV fluids, so Nicholas was really happy he didnt have to carry around a backpack to go to the bathroom and spread himself out when sleeping in bed. His port was still accessed since we still needed to administer IV antibiotics until Monday to prevent any infection. His C-Diff seemed to be gone and hadnt returned. He was still being medicated for it to make sure we get rid of it completely. We are scheduled to go back for level counts on Monday. Doctors are planning to schedule his testing towards the mid-end of next week, to ensure levels are up and Nicholas feels strong! We were so happy to see Nicholas is on his way back to feeling himself again.
St. Baldtricks Event – Downtown Café – March 17th
We prayed everyday that Nicholas would be ok to attend the St. Baldtricks event this week. This morning, we woke up and both Nick and I going back and forth on whether or not to go to the St. Baldricks event today. Nicholas had been getting better every day with no signs of fever or infection. Last night, I went down to the Downtown Cafe and was the first time I walked in in a while. I held back my emotions to see what they had done for Nicholas. His presence was everywhere, from clovers on the bar, to Tshirts being sold. Such an honor, an experience for Nicholas to put some meaning to this all this; something that couldnt cant pass up given that Nicholas was feeling relatively well. When Nicholas woke up this morning and asked if we were going, we answered without hesitancy YES! With mask and gloves and prayers, we went! We knew we made the right decision. As the doctors told us in the past, if he feels good and you take proper precaution, he doesnt have to live in a bubble; allow him to live his life. Today is a promise; tomorrow is not... We are so excited to make an appearance even if it was for just a short while!!
It ended up being an amazing, yet COLD day in Glen Cove! A special and warm thank you to John Zozzaro and The Downtown Cafe Staff for hosting such a magnificent event! Every year, The Downtown Cafe hosts and sponsors the St. Baldricks Event in Glen Cove, NY and this year, my dear friend, John selected Nicholas to be their Honoree Child. Nicholas’ presence was everywhere! Thank you to all of our family, friends and local supporters for coming down and showing your support! The turnout was incredible, the love and support that this community shows is just priceless! The best Community ever!
Recovery from Round 5 – March 13th – March 17th
Since we got home on Monday, Nicholas had been doing pretty well and was taken off of fluids. His appetite took a hit and slowly returned. He ended up running a low grade fever. We had a doctors appointment scheduled for his blood counts and his fever was gone once we got there. It just so happens that his WBC were down to almost nothing. We thought we were going to be admitted into the hospital, but ironically they ended up sending us home with IV fluids again to ensure he remained hydrated. His C-Diff was under control and he even started to eat a bit.
During this time, we are anxious for Nicholas to get better so we can start his complete body assessment…something we had been waiting for. We really didnt know what was next...so our next course of action depended on the results of all his testing. We were hoping for a quick recovery so we could finally get some answers on how is has responded overall!
Nicholas continued to struggle these next couple of days since we got home with vomiting and not eating anything at all. The positive side is that he was home on IV fluids and he was being hydrating at home rather than in the hospital. We had been to the doctors office every single day this week to follow up on his counts. They had put him on antibiotic IV, changed his anti-nausea medication and we were told that he would be on home IV fluids all weekend. We just kept praying that he feels up to par and doesnt run any fevers due to his levels dropping. Of course any fevers at this point would have put us straight into the hospital.
Nicholas ended up having another emotional breakdown. Nicholas has become very aware and conscious of his situation and results of his levels dropping. This weekend, our local Downtown Cafe, a St. Baldricks Event Sponsor selected Nicholas as their honorary child. In addition, The City of Glen Cove asked us to have Nicholas in the parade as "Grand Marshall". Nicholas was in hysterics when we told him that we dont know what we were able to go and needed to wait until Sunday to see how he was feeling. Of course, even if he's feeling well, the fact is his WBC are depleted and will put him at risk for infection. This for us was heartbreak too. We so want Nicholas to see what St Baldricks is all about. We wanted him to see our wonderful community coming together and shaving their heads to help raise money towards children like himself who battle cancer to help find a cure. We couldn’t imagine the feeling he would have just experiencing this. We were torn and said that we would just put a mask on his face and gloves on his hands for him to just come down for an 1hour or so. The sad part is Nicholas said "I dont care if I have a mask on...I want to go!" Then he cried and asked me to leave him alone and go away. This killed me and quite honestly, he's getting older and maturing so quickly that up till recently, he hadnt been so verbal and lately we've noticed this change. He's finally starting to fight us on things. Its a good thing, its maturity but god is it harder on us on all levels.
Round “5” with Round “6” Meds – March 8th – March 12th
So we are finally here with “Round 5, but Round 6 Meds” which was identical to Round 4 that he handled relatively well, but his levels took a much longer time to recover. With this round, we started off with low side levels, but still able to move forward with the chemo.
Nicholas did experience the normal nausea and vomiting associated with chemo. He was also very restless and uncomfortable. He ended up having a blood transfusion, ran a fever and his electrolytes were low. Doctors seemed to think the fever was a result of the Cytoxan chemo drug. It just so happens that Nicholas ended up developing diarrhea and test positive for C-Diff again! They started treating him immediately.
We ended up being in the hospital one extra day than planned and sent home on IV fluids since they were pretty positive that the fever was associated with C-Diff. We were advised by Dr. Weinblatt is was ok to treat the fever with Tylenol and follow up in a few days for a check up on blood counts. When we got home, Nicholas ate some Smiley Fries! It’s amazing what the comfort of your own home can actually do!
Some School and Sports Breakdown– March 4th – March 7th
Nicholas got some school time in this week, before heading into Round “5” with Round 6 meds. He loved every minute of the normalcy he’s had these last couple of weeks feeling like a normal 7year old.
These last couple of days, we had to deal with the reality that the spring sports season was beginning and Nicholas was not going to be playing. Since Nicholas was diagnosed in early Nov, he didn’t get to finish his soccer season and didn’t start his basketball season. However, this season wasn’t so difficult to deal with as Nicholas didn’t really seem to mind too much. I would assume it has to do with everything being so new and adjusting to our new lives. However, I knew that spring was going to be tough. Not only on Nicholas, but on us as parents knowing how active he is in sports and the passion he has to go along with it.
Nicholas was at his cousin’s house and ending up being part of an active discussion about Baseball registration, Team Selections and practices. He then realized that he wasn’t going to be part of any teams this year or play baseball specifically! We were about to leave my sisters house, when Nicholas suddenly stormed outside and said he wanted to go home. At first, I thought he was just tired and cranky. But in fact, it was an official breakdown!
How do you tell a very active 7yr old who’s passion is sports, who played sports, who lives for sports that he cant play sports this year?! How do you console your child, make it all better, tell him theres a solution, when all you really feel is helpless? I was dreading this moment and its finally here. When we got home, Nicholas went into bed and dug his face into his pillow and just broke down...crying...with feelings of sadness and helplessness that he will not be playing "baseball" this year. He’s aware that he already skipped on Soccer and Basketball, but Baseball is one of his all time favorites to play and such a great player with a great arm! I laid next to him, caressing his face and assuring him that he will go watch all of his cousins and friends this year as many times as possible. Since he won’t play, we will be active on the bench rooting them on. I tried so hard, but it didn’t relieve his pain. He proceeded to say...."That’s all I do is play sports...now I won’t be able to play anything and it's all because of this stupid chemo". And then he said..."And I’m going to be in the hospital for like 200 days." Thankfully, we were laying in the dark so Nicholas was unable to see my tears rolling down my face...but I wanted him to speak and feel since he usually keeps things to himself and I worry about that. I told him it was ok to be sad and mad and to let it out and tell me anytime he wants to talk. After this, I logged onto Facebook and shared this story with all of our followers. I must say that was one of the best things I could have done. After posting this update, we had received a tremendous out pour of support to help Nicholas cope with this disappointment. We had people volunteer their time to have a catch with Nicholas. We have intramural and travel baseball teams reach out to have Nicholas as part of their teams. All in all, Nicholas will now be part of 2 baseball teams with associated uniforms and will assist with keeping scores, inning counts, bat assistance, etc. When we presented this to Nicholas, his face lit up and was very excited. All he wants to be is "part of a team". The the reality of it is, we really dont know how much time he will get on the field, considering he has some invasive treatments coming up...such as a possible 2nd surgery and Transplant. However, the fact that we did find a "solution" to this problem is worth more than anything else. Nicholas now feels like he's still part of a team and if he's happy with that, then we are happy too! Sharing a life journey with the world is not for everyone...however...I can’t imagine going through this and not being able to speak, feel and vent with my Facebook family! Its bring us strength and courage and we thankful for all of the feedback and advice...thoughts and prayers we received everyday!
School Time/Normalcy/NO Round 5! – Feb 26th – Mar 3rd
These next couple of days, Nicholas got stronger and started to feel like a normal kid again!
Nicholas was eating better with a little more every day. He was attending school and being 7 all over again was a great feeling. Nicholas went to a NY Islanders game and a NY Knicks game during the weekend. So, all in all, Nicholas is enjoying his “good days”.
We went to the ENT to get his 2nd hearing test done. The hearing test showed that there wasn’t any additional hearing loss, however, it didn’t get any better either, considering the steroids he was put on. They were hoping to have restored some of the loss, but unfortunately that didn’t happen. We discussed this with Dr. Weinblatt and he advised us that Round 5 would most likely be modified. He asked us to make an appointment to visit with him tomorrow to discuss as well as check Nicholas’ levels.
When we went back to Dr. Weinblatts the next day, he advised us that he will be eliminating Round 5 all together! Skipping over this round would avoid and prevent Nicholas from getting additional hearing loss. Dr. Weinblatt informed us that we will move right into Round 6, which is the equivalent to Round 4’s medications. The doctor stated since Nicholas has been responding well to treatments overall and his sonogram was unable to pick up the mass after Round 3, they anticipate a significant change and shrinkage within Nicholas' body. Dr. Weinblatt is in discussion with Dr. Maris @ CHOP and they are working together on this. The plan is to administer Round 6 next weekend. After this round, Nicholas will have a full assessment with a CT Scan, Bone Marrow Biopsy and MIBG Scan to evaluate the size of the residual mass left behind (hopefully nothing there), check the primary site to rule out new growth and of course make sure the disease hasn’t gotten to his bone marrow or spread to any other place in his body. Once we have the results, this will determine the next step. If the mass has completely shrunk to almost nothing, then we move onto TRANSPLANT at CHOP. If there is a small mass there, a 2nd surgery is possible to remove and have as little disease as possible before transplant. If this would happen, a "real" Round 6 chemo will be administered, however, the chemo meds will be determined at that time. We are remaining positive and with both Dr. Weinblatt and of course, Dr. Maris, as we know we are in the best of hands. Honestly, I am thrilled in a way that Round 5 will be non-existent! On another note, Nicholas was not in school today...his red blood counts were very low and needed a blood transfusion. Again, this is the result of Round 4 where your bone marrow gets hit harder and it takes longer for your levels to stabilize. All in all, he wouldn’t have been ready for his next round today...sound good thing we extended it to next week. His weight is slowly coming back. He weighed in at52lbs with our goal to be 55lbs by next Friday.
Recovering from C-Diff at Home – Feb 20th – Feb 25th
These next couple of days got better as the days passed. Coming home from the hospital with C-Diff, constantly in the bathroom, tummy aches and no appetite is not fun. But there was light at the end of the tunnel.
Nicholas recovered at home as fast as he could. The C-Diff infection affected his appetite which took a while to recover. He ate a few bites of all his meals here and there...but nothing like we saw a few weeks ago. His energy level dropped again, which was a result of his red blood cells dropping and that a transfusion was forthcoming. We were so concerned about making sure he ate and gains a little weight back on before next Friday, which is the start of the horrible Round 5 (Exact at round 3)!
The next day, Nicholas doctors appointment went well. His levels on the rise...though his white cells still relatively low. Doctor was not concerned and said to resume as normal. My only wish is I wish Nicholas felt normal. He definitely was not up to par these days. His appetite was just not there...he hadn’t eaten all day and just had a few bites of some chicken and grapes. He was complaining about mouth/jaw pain. At first we thought it was bone pain which could develop from his most recent chemo, but after today's appt, doctor seems to think that Nicholas might have the beginning stages of a few mouth sores. The mouth sores are another side effect to the Round 4 chemo meds. Nevertheless, he put him on a medicated mouthwash to help subside the irritation and prevent them from becoming full blown mouth sores. Of course, without fuel, your motor doesn’t run...well, his energy level definitely was taking a hit from all of this.
We had a discussion with Dr. Weinblatt this morning regarding our next course of action with Round 5. We were on schedule for Round 5 to begin next Friday, providing that he doesn’t have any more hearing loss. We were scheduled for a hearing test next Wed. If the hearing test comes back with further hearing loss, an adjustment to Round 5 would be made which can include eliminating Cisplatin altogether. I’m not sure what that meant exactly, but Dr. Weinblatt has been in contact with Dr. Maris @ CHOP and they were discussing the "maybes" should additional hearing loss be found. I’m aware from other NB moms that Cisplatin has affected their children to the point that they will need hearing aids because of this medication. We had a little concern considering that he may be taken off his treatment plan slightly and coming off protocol. Nevertheless, we remain patient and see what next week would bring. For now...Nicholas is trying to enjoy himself when he gets the few bursts of energy and we keep praying that his appetite and energy will return so he can have a few "normal" days before heading back to the hospital next week.
A few more days after that, Nicholas returns! Nicholas appetite had finally picked up! Had a discussion with the doctor and advised us that Nicholas was ready for school once again. Nicholas was excited to know that he was heading to school tomorrow. I asked him..."So Nicholas, what do you think about going back to school?"...Nicholas replies..."Why not Mommy?...Im feeling better and I dont want to be home forever!" Loved it! Doctor also stated that he will not start Round 5 this Friday...instead, will wait a little longer...possibly another week to allow Nicholas to put on some weight. His hearing test scheduled for Wednesday, so the results of that would determine our next course of action for Round 5. So for now...we pray Nicholas remains healthy so he can get some school time in and enjoy a little bit of "normalcy" again..
Hospital Stay – C-Diff Infection, Again! – Feb 16th – Feb 19th
So, I had a planned business trip from Feb 16th – Feb 19th in San Antonio, TX. I was pretty bummed that I had to leave him while he’s in the hospital, but I know when he is with his daddy, he is in the best of hands.
I came to visit Nicholas on Saturday before my departure and he looked horrible. He had diarrhea, stomach cramps and nausea with mild vomiting. He was on heavy duty antibiotics since he had no immune system. He tested POSITIVE for C-Diff again!! It was very sad that he had to go through this all over again. This is the exact infection he encounters when we were in CHOP. Supposedly, it could possibly be that it never left his system and just went dormant. The body has lots of "good" and necessary bacteria along with the "bad" or dangerous bacteria. Clostridium difficile is a "bad" bacterium. When you are healthy and not taking antibiotics, the millions of good bacteria in your system keep the c-diff under control and in smaller numbers. However, when you take an antibiotic, the levels of good bacteria are reduced down to a smaller number. If your c-diff is strong and doesn't get killed by the antibiotic along with the good bacteria, then it is possible that the c-diff will overpopulate inside your intestine or colon. When this happens, you may get the illness called clostridium difficile colitis (C-diff). So here we are again, not only is he dealing with low counts to stabilize, he’s dealing with this horrible infection all over again. I ended up leaving him in ok spirits and told him that I would call everytime I had the chance too. Off to San Antonio I went.
When I arrived in San Antonio, I called Nick and said that Nicholas was somewhat the same...very tired, no appetite and didn’t even want to sit in a chair. He did play some Xbox. I got the chance to speak with him and along came an attitude. I was happy about that…I say that is ALWAYS a positive sign of him getting better. Doctors were still waiting to get the 24hr blood culture results back in the morning to see if they can start easing off on the heavy duty antibiotics. Since Nicholas white blood count is zero, they need to make sure that there is no blood infection which can cause septic shock, which is why these kids are always on antibiotics with low blood counts to prevent or be proactive in treating an infection since their bodies cannot fight it off on their own. The downside is to this is you can get C-Diff from certain antibiotics and C-Diff is hard to get rid off!
During the course of these next few days, Nicholas had lost his appetite and not eating. He wasn’t running a fever, and was playing Xbox, which is a good sign. His blood culture came out negative, which thankfully meant, no bacterial infection. The stopped the antibiotics and started the horrible Flagyle medicine orally! Nicholas HATES it…and it does taste absolutely horrible. We found a way to ease the pain by popping mint tic-tacs right after he swallows the medicine and it worked! His blood counts were still low and his white blood cells were not budging yet and still depleted completely, which means isolation mode and no visitors :-( ...his red blood cells were dropping again, which meant another blood transfusion and his platelets were neutral and retaining their levels. He was now down to 51.5 lbs! It was so sad since he had reached 55lbs and had gained 6lbs within the last couple of weeks. The good thing is they kept him on the appetite stimulant...so as soon he feels better...she should start eating again. Doctor says the C-Diff would definitely cause lack of appetite!
The next day, Feb 18th, was a great day. Nicholas smile had returned! He was in much better spirits and his energy going up. He was taken off the strong antibiotics. His blood counts still low, but doctors said they should start a turnaround in the middle of the week. His platelets are low and are anticipating a platelet transfusion tomorrow. Doctor stated the C-Diff was definitely the cause of his fever, fatigue and weakness. The doctor also increased his appetite stimulant dosage and would need to see him eating and drinking before he would consider releasing him. Nicholas had no interest in eating…especially hospital food. I felt that once we was at home in his own environment, he would definitely eat something.
Nicholas ended up having a great night and slept well. His levels were still dropping, although his red blood count did not call for a transfusion just yet. His white blood count was still at zero and hadn’t budged and his platelets dropped to 19 which meant a platelet transfusion.
In the midst of getting a platelet transfusion, we needed to stop it as Nicholas had a reaction and broke out in hives. They treated him with some cortisone and allowed the hives and itching to subside. They restarted the transfusion and he did ok after that. His energy and spirits kept rising and he kept smiling and joking. He was still not eating and still has the diarrhea. They were debating on whether or not to keep him another night or send us home today. The concern remained his nutrition and staying hydrated on his own at home. Luckily, they decided to let him go home…and we were so happy to do so!
A Bit of a Roller-Coaster – February 11th – February 15th
These next days ahead played a bit of a roller coaster ride for us. Here we have enjoyed watching our son get a bit stronger, playing, going to school and feeling like a normal kid…and then we have to see him go through this all over again. It was a difficult transition, but we have to deal with it as it comes.
His return home started out great. We were amazed to see how well he had responded to Round 4. No complaints of nausea, no vomiting, appetite quickly returned and was energetic. We actually thought, wow…he’s got this round beat. Well, his coloring had started to become affect and had the pale skin and dark shadows around his eyes. We were anticipating this since we were told that Round 4 hits the bone marrow pretty hard and what the most difficult part is to get your blood counts stabilized.
We noticed that Nicholas had started to lose his eyebrows and eyelashes at this point. A transition we were not looking forward to, however, is inevitable.
When we took him to the doctors for a checkup on Feb 13th, his levels had started to take the expected dive. His white blood count almost depleted, which means risk for infection, which means limited visitors and germ interaction. Our next follow up is on Friday, Feb 15th. Doctors are anticipating a hospital admission if Nicholas were to run a fever at this point as well as a blood transfusion. So, at this time, we are just hoping for the best and trying to keep him comfortable and germ free.
Happy Valentine’s Day! – This was such a special day and so happy that Nicholas was home for it. Nicholas woke up this morning very anxious to hand me my beautiful Valentine’s Day card. The card was touching, but the look on his face and the innocence of handing it to me, hearing his little voice and kissing my cheek was just priceless. It is just amazing how sometimes in life we take these little gestures for granted when life is going smoothly. But when life takes a sharp turn, you suddenly realize what really matters. The twinkle in his eyes, the smile that makes my heart melt, his little fingers and hands that I so often hold, his silliness that makes my day easier, his attitude which confirms he's feeling well, his bad boy side which allows him to make his own decisions even when we think they are wrong...these are the things I am most thankful for.
Here we are, February 15th and heading to the doctors for our follow up visit. As expected, Nicholas' levels had dropped. Nicholas had been very lethargic these last couple of days and today we are at the doctors for blood counts. His white blood cell count is now completely depleted to ZERO, which means he is at high risk for infection and his body will not be able to fight it off on his own. This is the point where he will need limited handling, no visitors, basically isolation until his white cells are back on the rise. Any type of fever would put him in the hospital. He didn’t have a fever yet.. His red blood cells were VERY low, which means he needed a blood transfusion today. His platelets were also low, but no need for platelets yet. It ended up being a full day and the doctors were contemplating whether or not to admit Nicholas. He continued to show signs of weakness, slept all day and vomited as well. Once the blood transfusion is over, they will administer antibiotics just in case there is something brewing. He wasnt running a fever, but doctors felt perhaps we should take precaution and have him on an IV and monitor him tonight. His immune system...well there was none. After the blood transfusion was over, Nicholas did show little signs of improvement and the doctors decided to send him home. They did leave his port accessed with the anticipation that Nicholas would return sometime this weekend.
Sadly, only 1 ½ hours after we got home, Nicholas started running a fever of 101.9. It completely spiked without warning. So, we get back into the car and head back to the hospital. The interesting part is Nicholas did not give us a fight. He knew he felt crappy and knows that the hospital will make him feel all better. Nicholas was admitted and had started on antibiotics, IV fluids and be monitored throughout the night and most likely for a couple of days.
Evening of Enlightenment Event with Sandy – February 10th
While Nicholas was in the hospital today with Nick, I, along with Team Pedone organized our first fundraiser for Nicholas. Thanks to our very dear friend, Sandy, who has an ability and gift of connecting with our loved ones that have passed, had approached us to do this event. Sandy volunteered her time so that all proceeds can go towards Nicholas recovery fund. The event attracted 250 people with the major of them coming from our local communities. A Chinese Auction, Grand Prize Raffle, Tshirts, Bracelets was available to all the guests for purchase. The event was a huge success and we are grateful for Sandy’s support and compassion towards Nicholas and our Family.
To my surprise, when I came home and walked through the door, I was thrilled to have seen that Nicholas was released from the hospital and was waiting for me to come home!
Since he was running a fever last night, we immediately assumed that he would be kept another night for monitoring, so that last thing I expected was Nicholas to be home! The doctors decided to send him home anyways. The feeling I had walking through the door, after an exhausting, yet most satisfying day was priceless!
He told me he was waiting up to surprise me…and he certainly achieved that! It was the best surprise!
Chemo Round 4 – Feb 8th – Feb 10th
Here we were in the hospital for Round 4, getting hit with the Blizzard of the Year! The interesting part is when Hurricane Sandy hit; we were in the hospital as well. There is no safest place, I must say!
Round 4 consisted of 3 different medications that are administered. The nice part is it’s only for 3 days vs our normal 5 days. One of them has common side effects of tingling and numbness in finger and jaw pain. Another has possible side effect of heart damage and skin discoloration and the main one side effect is nausea with the one 6hour drip alone. Nicholas happened to have tolerated this round rather well. Besides the tiredness, he didn’t really have any nausea. His appetite was starting to become affected slightly and hospital doesn’t make it any better. When one of the nurses came in to deliver a meal and Nicholas clenched his nose and said it smelled, that was a good indication that nausea was short coming. He rested a lot, but all in all, these 3 days came and went with no problems really. He was running a slight fever on Saturday, which leads me to believe that he may be here for another day or so, which seems to be the pattern these days.
Overall, Round 4 has been the easiest round we have experienced thus far!
Enjoying some “more” normalcy – Feb 4th – Feb 7th
These last couples of weeks have just been just wonderful. We can honestly say that it has been the first 2wks since diagnosis where Nicholas actually enjoyed himself. The extra week off from chemo really did us all good.
Nicholas overall felt great, is going to school and has put on 6.5lbs! It has been so great to sit back and watch him have some fun and feel like a normal 7yr old should feel. On Feb 6th, Nicholas had a small procedure done which required him to be put under anesthesia. The procedure was to remove a stitch abscess that hadn’t healed from his surgery back in October. It started to get bigger and bothersome and the doctors felt it was a good time to remove it. It was done as an outpatient and was not invasive at all. Unfortunately, it was an all day ordeal, but we got home and he felt absolutely fine. He rested and went to school the next day! That evening Nicholas once again, had the opportunity to go to a Rangers game and so he did! This was a NY Rangers vs NY Islanders at MSG! Thanks to Delta Air Lines (my employer), they were able to arrange Nicholas to ride the Zamboni! Nicholas loved it…he waved at the crowd and enjoyed being on the ice, riding around feeling like a king!
All in all, these have been the best
weeks so far and we enjoyed them tremendously.
Unfortunately, tomorrow we head for Chemo Round 4.
Today, Nicholas had a surgical procedure done in the hospital. Nothing serious or invasive, though he was put under anesthesia and a small incision was made to remove a stitch abscess that developed from his surgery scar. It ended up being an all day thing...you know hospitals and recovery time! Nicholas will be back in school tomorrow and off to a Rangers Game tomorrow night. Unfortunately, this ride is coming to a halt very soon as he starts Chemo Round #4 on Friday. Tomorrow is another good day and we will take all we can get...let's deal with Friday when it gets here...and hopefully we wont get hit with a blizzard! :-) Stay tuned everyone...updates on Nicholas will be coming soon...
Wow…An amazing end to January and
start to February –
January 28th – Feb 3rd
Normalcy continued throughout this week and Nicholas got to complete 1 full week at school since October! He absolutely loved it and even participated in his Community Project where each student got a chance to pick a community building of their choice. They learned about the necessity of it, what would it mean to the community if this building/shop didn’t exist, etc. Nicholas created his “Best Sports Shop” building. He knows that if this wouldn’t exist in our community, then the children would not have a local place to buy their sports gear. Considering what a huge sports fan he is…to Nicholas, this is a necessity not a want!
The rest of the week went great and came to an end with no setbacks. Nicholas had a wonderful time feeling normal and being around his peers.
Come the weekend as we enter in February, on February 2nd – Thanks to our very dear and close friends, Anthony & Jennifer Congero – A hockey sporting event took place at the NY Islanders Iceworks for the little guys to play some tournaments. Each team had to contribute a certain amount of money. This event was named “Net One for Nicholas”. All proceeds of this event went towards Nicholas’ recovery fund. The event was a success! The boys had a great time on the ice and the parents enjoyed watching! Nicholas felt great and was even able to go and support all of the players…he loves to watch hockey! There were beverages, refreshments, Tshirts and bracelets being sold. The winning team got trophies and metals! It was just unbelievable and we are grateful for all the support that has been given to us. Thank you AJ and Jen!
On February 3rd….we get a phone call to tell us that this event made it in the NY Post! Nicholas is starting to feel like a little celebrity. The article was amazing and even an Islander player commented about Nicholas who even gave a generous donation on his online fundraiser. This week was a great one all together!On February 2nd – We also get another surprise! Thanks to our dear friend Mike Graziosi who contacted our local Stop N Shop supermarket…a local “shoppers” collection was being conducted since December in honor of Nicholas to help raise money for our family. Every cashier had an envelope on at the register and would ask our local shoppers if they wanted to donate to our local warrior fighting his biggest battle of his life! Interestingly, I avoided Stop N Shop for a while, not knowing how I would feel seeing all of this. Well, last week I walk up to the register to cash out and I notice the green envelope near the register. I remained calm and quiet. When it was time to pay, the cashier turns to me and says “Would you like to donate to Nicholas Pedone, he is fighting cancer in Glen Cove”? Well, as my eyes filled up with tears, I say to the cashier, “thank you for what you are doing for my son”. She looks at me and repeats what I just said with enthusiasm and with empathy, says…”you are Nicholas mother?” and I say “yes, I am.”….she immediately put her hand to her heart and her eyes filled up with tears and told me that she prays for Nicholas every night! Thank you Mike for your connection and for initiating this fundraiser! It was a complete success. I am still blown away by this unbelievable community we live in! We do have by far the best community around!
Enjoying some Normalcy – January 24th – January 27th
I don’t have too much to say for these next couple of days only that Nicholas is enjoying some time feeling like a normal 7year old should! Going to school, doing homework, playing Xbox, playing with family and friends! His spirits are up and usually are regardless.
A visit to the doctors and his platelets are on the rise which means no restrictions on physical play! DR also stated that since they are so thrilled about Nicholas sonogram results, he will give him an extra week to recoup from Round 3 with the hopes that he puts on a little weight! This means Round 4 is now extended to start on Feb 8th!
His appetite stimulant is starting to work since he’s been telling us that he is "STARVING" and we haven’t heard those words in a long time! His breakfast menu has changed a bit due to his palate changing...so Pasta seems to play a big part in his cravings lately!
Not only is Nicholas feeling normal, so are we. Normalcy at home, at work and life in general feels great!
Big Scare – Bladder Hemorrhage – January 22-23rd
After such a great day today, tonight before going to bed, Nicholas went to the bathroom and to our surprise...his urine was RED and mostly blood! We immediately contacted the doctor and said his platelets were probably low. We had an appt for tomorrow morning for a blood count checkup and they advised it was ok to wait till the morning. Nicholas wasn’t scared and we made light of it, although I had a knot in my throat! We pretended it was nothing and joked and said his pee-pee looked like Cranberry juice. He found that amusing and didn’t seem to bother him. That is how much he trusts us! I don’t think I slept much knowing the unknown. Not knowing what was going on in his little body and he was urinating blood! I woke up in the middle of the night to checkup on him…it was very scary but was so happy to see the sunlight in the morning!
Next morning, Nicholas’ urine was even bloodier, dark and red. I noticed a few more bruises on his body and noticed some dried blood on his chappy lips. Im wondering if he has any platelets at all! We get into the car to head to the doctors and he started with a minor nosebleed, thankfully, not a gusher. At that point, I got very nervous. I couldn’t get to the doctors fast enough. Your mind plays tricks with you and sometimes cant help but think of crazy things! Nevertheless, all I will say is I was very happy to have finally arrived! When we got there...you could feel the urgency waiting for Nicholas. They immediately accessed his port, took blood, platelets were ready for transfusion. We were just waiting for the blood results to know for sure. He was experiencing some bladder hemorrhaging. His bloods count came back and his platelets were completely depleted to 1. Normal range is 150-400. That is very dangerous. This is a result of his chemo of course. They immediately started the platelet transfusion. Other than that...he was happy go lucky with no associated pain and really wanted to go to school. Today was definitely a no-show for school. Doctors said we should start seeing an improvement in his urine throughout the day and this transfusion should stop the bleeding. As long as there is improvement, he can go to school tomorrow, however without physical activity to avoid and prevent falling and bruising.
We got home around 2pm and by 5pm, his urine was clean and clear! We all got very excited and he was happy to know that back to school we went! This was a very scary experience, one I don’t ever want to experience again!
1st Day of School since Dec – January 22nd
What an AMAZING DAY!! Nicholas was so excited to wake up this morning to head off to school. He ate a few bites of breakfast which was better than yesterday. It looks like the appetite is coming around.
We knew that the class was going to wear their Team Pedone – North Shore Warriors T-Shirt and so we had Nicholas wear his, without telling him about his classmates.
Both Nick and I took him to school this morning a bit later so the teacher had some time to speak with the class about Nicholas’ return. To our surprise, as we approached the door, Mr. Papa, part of the security staff that meets and greets anyone accessing the building, comes to open the door and is wearing the “Team Pedone – North Shore Warriors T-Shirt!”
We continue to walk into his classroom and ALL the children with HUGE smiles on their faces greeted Nicholas as well as his teacher and social worker. Everyone was SO excited to welcome Nicholas back to school and EVERY student in his class including his amazing teacher, Ms. DiRe are ALL wearing their Team Pedone - North Shore Warriors T-Shirt to make his first day back a memorable one!
As we said goodbye and we walked out, I was holding back the tears! We continued to walk out of the school and noticed one faculty member after another wearing the Team Pedone T-Shirt!! Library, Music, office, other teachers...this was just incredible and felt like a Team Pedone Day at Glen Head Elementary, ALL for Nicholas! This is what this school is all about! We were so grateful to everyone for making Nicholas first day back so great and memorable! Kudos to North Shore Glen Head Elementary School!!! They did an absolute fine job dealing with Nicholas situation and turning it into a positive experience for all involved! There were lessons learned on all parts that day! I hope the children realized how much that meant to Nicholas and how special they were for wearing a t-shirt to support a friend for a good cause! Nicholas had such a great day…he came home smiling and was looking back to going back tomorrow!!
Home Time – Sonogram Results – January 16th – January 21st
Nicholas is still struggling with some nausea and vomiting, but is home on IV fluids. After today’s follow-up at doctors, we decided to keep him on IV fluids another day and hopefully remove it tomorrow. They will also put him on an appetite stimulant to try and fatten him up a bit. He's lost 3 lbs from round 3...a total of 13lbs to date. Everything he's experienced is completely normal, although he did not tolerate this round as expected.
While we were in the hospital, they had performed an abdominal sonogram as a pre-assessment as to how he is responding to the chemo. The doctor informed us that although a sonogram is not the best for small details, it can give us a indication of new mass growth and old mass size. There was NO new growth seen on his right adrenal gland, which was his primary growth site! This is EXCELLENT! Even better, the sonogram could not identify a mass at all, not even the residual one!! HARD TO BELIEVE! The doctor did say that doesn’t mean the mass is gone, but considering the size that was left...the sonogram could have picked it up and it didn’t. What this does mean is that only after 2 rounds of chemo (test was done during the 3rd), the results prove that Nicholas is responding GREAT to the treatments so far! If he continues to respond this well, there is a good chance that the residual tumor will shrink to nothing and Nicholas will not need a 2nd surgery. We needed this news...after such a horrible chemo experience...this puts things into perspective a bit...fight the good fight with all your might...in the end...you will be a winner my son!!
Nicholas is still struggling even after is his IV fluids were removed which means that it's up to him to keep himself hydrated. He’s been drinking a bit...but still not eating anything. He's been vomiting at least 1x a day still which delays us from giving him the appetite stimulant medication. We weighed him this morning and now he's down a total of 5lbs from round 3...in all...15lbs todate. He was complaining about stomach pain this morning and seems a bit lethargic and went back to sleep. Ultimately, Nicholas is very excited to return to school this week...with the hopes of returning on Tuesday.
After 4days of being home, today was a big improvement from yesterday. He has started to drink more and keeping himself hydrated. He is still not eating but showing signs of cravings. He put gum in his mouth for the first time in 2wks and just had a vanilla wafer cookie. He vomited this morning, but so far today he’s kept all his fluids down. We have been in constant contact with DR today and said that this is no longer related to chemo at this point. This is now a cyclical process where hes developed a spasm in his belly due to all the vomiting incurred. The doctor explained, the more he eats and drinks, the better he will feel and the vomiting and nausea will go away. He’s trying so hard, but fearful and I cant blame him.
Well here we are on Monday, January 21st off from school from Martin Luther King Day! We were so excited that Nicholas had a better day and an even better evening! Nicholas managed to not vomit today, played, ate a few more goldfish, drank a lot more and for the first time in 2 wks...we sat down together as a family for dinner with Nicholas eating some pasta!! This was his first real bite of anything in almost 2wks. His also started him on the appetite stimulant this afternoon, though the effects are not seen for at least 3-4 days! We were so grateful for this turnaround and very excited that Nicholas will be in school tomorrow where he belongs and so far overdue! Nicholas missed school and his friends tremendously. Nicholas went to bed knowing his school bedtime is 8pm and anxious to wake up in the morning! He went to sleep really happy with big smiles and his before lying down looks at me and says..."Mommy, I think my energy is coming back." Thank you God for putting an end to this horrible chemo round!
Chemo Round 3 – January 9th – January 15th
We knew Round 3 was going to be difficult, but would never have imagined the effect it would have physically on Nicholas and mentally on us!
During Round 3 there are 2 chemo drugs that are administered. One is called Etposide – which comes with your normal side effects of mild nausea/vomiting, loss of appetite, hair loss and low blood counts. The 2nd one is called Cisplatin. Cisplatin a monster drug. It comes with stronger nausea/vomiting, loss of appetite, hearing loss may occur; kidney damage and low blood counts are the common side effects.
We planned on a 4-day stay and knew it was going to be a hard one and that it suppresses the appetite which is one of our concerns since Nicholas has lost about 10lbs since Oct. His appetite was finally stabilizing and here we were back to square 1. His first 2 days weren’t so bad. He felt tired and didn’t really complain about nausea. On day 3 of chemo, Nicholas was still handling it pretty well. This chemo technically would give you round the clock vomiting if it weren’t for the anti-nausea medications he was on. He hadnt eaten not 1 crumb in 2 days, but that is normal and he would probably end up throwing it up anyway. He did great with the exception of 12midnight when he had to take his medication for his C-Diff. That medication is absolutely horrible tasting. Not only did he have to get woken up out of a deep sleep, he had to orally take the medicine which he ended throwing it up and then some. I wondered what else he could possibly throw up since he hadn’t eaten. Well, it was all the water he's been drinking and probably a little bile in the mix. He handled everything like a champ...lots of dirty clothes and sheets...he would just get up, we changed him, the bed...and he was fine and back to sleep he went.
After 17hours, Nicholas finally decides to wake up the next morning. Though, he woke up feel very yucky. He was lethargic, nauseous and just very weak. He was given a dosage of Zofran and that helped a lot. ZiZi Teresa walks in with Nerf Glow Basketball. He didn’t seem so enthused but once Teresa started playing, his attitude changed and he started get energized a bit. He ended up having a little fun that night…so energized and happy again, he got out of bed with all his machines surrounding him playing basketball in his hospital room! Tournaments were going on with Nicholas, ZiZi Teresa and Aunt Krissy! We got a lot of attention from the nurses as they pop in to see what was going on...LOL...I guess the ball bouncing off the walls and door may have been the cause of that! The nurses are amazing!
Unfortunately, it’s now Sunday and we were told that we were NOT going home today as the affects of the chemo had kicked in. Nicholas was sleeping a lot and vomiting a lot too. He did find some time in between to laugh, smile and joke, but this time, those moments were few and in between. He hadn't eaten in 4days and so all he was vomiting was bile and fluids. Doctors were concerned of dehydration if he was released today, since his last treatment is today. They decided to keep him an extra day to monitor him in the hospital and quite honestly, I'd rather it that way. Nevertheless, so far, this is the worst we had seen him in regards to his tolerance to the chemo meds. We were hoping that Nicholas would be an exception, but the reality of it is, he was experiencing the most common side effect to the meds and that really is ok.
Here we are on Monday and we were just informed that we would be staying 1 more night. Nicholas did not have a good night or a good morning. His vomiting was a bit worse from yesterday and the diarrhea didn’t help. The concern still remained to be dehydration. The afternoon was a little better. The doctors told us we should start seeing relief and a turnaround tomorrow. His red blood count was low and they proceeded with a blood transfusion. His C-Diff test was negative, so we were happy that the bacterial intestinal infection is gone. The anti-nausea meds had been round the clock and he was being monitored and kept one more night to make him more comfortable with the hopes that the nausea subsides for tomorrow's discharge. This had been the toughest so far...but the worst part of this round seemed to be almost over...only better from here with the coming days...and...Since there are 6 rounds of chemo...we start counting down...only 3 more rounds to go!
I had a difficult time with this round. You would never think that you would experience what you see in the movies…right in front of you, the difference…its your child. The weakness, the nausea, the excessive vomiting of bile, the pale color of the skin, the dark circles around the eyes…I felt like I was about to crumble. Nicholas did not tolerate this treatment well. He was not eating or drinking on his own yet, which meant another night in the hospital. Tomorrow would be 7days in the hospital. He was really hoping to be released and go home today. When the doctors informed us that he needed to stay another night, the look on his face, the glassy eyes and the sadness he portrayed bought me to tears. A child should not be going through something like this...being stripped of a childhood and living 50% of his time in a hospital...does not include all the doctor follow-up visits, blood tests, scans, isolation periods due to low blood counts at home…Does not include all the times he get poked at, touched, pushed on, shots, port access, temperature checks, blood pressure checks, blood transfusions, nausea, weakness, tiredness, boredom, loneliness and sadness. This doesn't include loss of schooling, not playing sports, not being around friends. But this finally all came to an end…On Tuesday, we were finally told we were going home!! A complete 360 from the night before! He ate a few goldfish and kept them down, spirits were up, his energy back and his smile was pasted to know he was going home!! As we say...his smile is forever our strength...thank you lord for lifting us up when we felt like we were crashing!
Medical News Timeline
· December 7th
o 2nd Round of Chemotherapy – 5 day block with Cytoxan & Topotecan chemo medicines administered
· November 24th
o Unexpected Hospital Admission – Fever – Low white blood counts
· November 20th
o Blood Transfusion due to low blood counts
· November 16th
o 1st Round of Chemotheraphy – 5 day block with Cytoxan & Topotecan chemo medicines administered
· November 14th
o 2nd Opinion with Dr. John Maris at Childrens Hospital of Philadelphia
· November 9th
o Final Diagnosis – Stage 3 Neuroblastoma with 1st opinion with Dr. Mark Weinblatt @ Winthrop University Hospital
· November 3rd
o MIBG Scan – Negative no spread to any other areas in the body
· October 25th
o 6 ½ hour Surgery to remove partial mass and insert chemotherapy port
o 1st Blood Transfusion
· October 24th
o Bone Marrow biopsy performed – negative - no cancer cells present
o CT Scan of Neck and Chest – Negative – no spread
· October 23rd
o ER Hospital visit to get full blood workup
o CT Scan detected large mass – Nicholas admitted
· October 21st
o ER Hospital visit to rule out appendicitis – done and negative
· October 19th
o Diarrhea and high Fever begins
· October 18th
o First complaint of side pain