I think we are doing better. There are fewer days of despair and more days of hope. This is entirely because of Nico and in spite of Nico’s flawed parents. Nico is handling treatment better than we could have hoped. The seemingly most difficult part for him has been the days he has lumbar punctures (once a week this month), and he cannot eat or drink after midnight before the procedure. For some reason, and in spite of my very vocal protests, he is consistently scheduled in the afternoon and he spends those mornings sitting in front of his snack cupboard crying.

Nico does not even flinch when his port is accessed with a giant needle, and he rarely complains while being injected with blood products and chemo over long periods of time. Nico is much stronger and much braver than his parents. Somehow he is not a complainer in spite of his genes. Incredible.

The ALL list serv continues to be a blessing and a curse. A few nights ago, a mother posted about her own feelings of guilt. She admitted that she had wished her child had not been born rather than suffer for the rest of his life. I was compelled to respond to her because in the beginning I had the same thoughts. I felt that I had brought my child into the world only to be plagued and tortured. Nico is truly the greatest thing that Jeff and I have ever been a part of and I felt that I had taken this perfect being and ruined him. Somehow the leukemia was my fault, and I heard this other mother reiterating those old feelings. Her message helped me to recognize that I have traveled some down of this hard road because I can honestly say that I do not feel this way any more. I told her that hope had returned to me, and that I knew it would return to her too, even if it does not stay as long as we would like it to.

Of course, for all of the good experiences you have as a result of the list serv, you also read posts like one I read last night – A father asking to be removed from the list since he had lost his daughter (after years and years of treatment) and did not feel he wanted to be on the list anymore. These posts are incredibly hard. I foolishly clicked the link at the end of his post and read about his daughter’s life. The way she was diagnosed, the beginning of her treatment – I could have written those posts, as they were identical to Nico’s story. This little girl had a T-cell versus Nico’s B-cell, which does not have the same prognosis. But the bottom line is that leukemia struck both of them, and as we hear over and over, for every parent the statistics are either 100% or 0%. You are either cured or you are not.

I have to face this fear. I have to come to terms with the fact that my child has cancer, and honestly I know that I have not been able to do this yet.  I know because I have not slept for more than a couple of hours at a time in weeks, when I do sleep I have nightmares, my mouth is full of canker sores and I am somehow fat in spite of existing on Excedrin migraine and coconut water. It seems self-indulgent to get a massage, go to yoga or even “talk” to someone, but I think the time has come because I cannot be there for Nico when I am sick and tired and when looking at his beautiful face hurts me.

There is not much to report, but I have gotten a few emails and texts asking if everything is OK, so I figured it was time to post. Nico is handling everything amazingly well. He is on the pale side and will probably need blood in a day or two, but he is generally happy and making the best of this situation.

Here is Jeff’s and my torture of the week . . .

When the clinical trial option was offered to Jeff and I, we really did our homework. We actually obtained the entire 381-page protocol and Jeff read the entire thing. I read the sections that applied to Nico, which was still a very large chunk. We then consulted with numerous parents (several had a child that received the experimental therapy) and spoke with several different physicians (including two pediatricians, a neurologist and a neuro-oncologist). And as a previous post mentioned, by the time we were done, not only were Jeff and I all right with Nico receiving the “experimental” combination intrathecal medication, we desperately wanted him to receive this option (versus the standard single intrathecal). I type quotations around experimental because the combination therapy has actually been used in other protocols for many years. So, we drew the short (or at least unwanted) straw and got the standard single.

We have not taken this well. Even though we knew it was a possibility. There are probably a lot of elements at play, but it has been disappointment after bad news after disappointment after bad news. And it feels like we have absolutely no control over any aspect of our lives anymore. So after much discussion and study, we approached our physician and essentially begged for the triple therapy anyway. I believe Jeff started the conversation with, “What waiver do I have to sign to get the triple?” Our doctor, who is one of the most diplomatic physicians I have ever met replied, “I am not doing it” the instant the Jeff got his last word out. What then transpired was a very intense, heavy, and long discussion that still feels totally unresolved even though there is nothing more to say.

From the research that we have read, both Jeff and I believe that the triple will end up as the standard of care, but this clinical trial probably won’t reach that conclusion for another three to five years. From the research done at St. Jude’s over a six-year period, this triple, in combination with the current chemotherapy backbone, could COMPLETELY eliminate central nervous system relapse in high-risk children. That would increase the disease-free survival from 88-90% to 91-93%. The difference in these numbers was not significant to me before I had a child with a life-threatening condition. Now there is an entire world of difference in 3%.

If you are thinking that we should not dwell on relapse, I will venture a guess that you do not have a child with ALL (acute lymphoblastic leukemia). Like I said before, 95% of ALL children are in remission at the end of the first 30 days of treatment. The next three and a half YEARS of chemo exist solely to prevent relapse. When you read any ALL literature, speak to any ALL parents, what you are going to hear 99% of the time is about relapse. That is what makes this disease so especially evil – it hides, waits and rears its ugly head years after it was supposed to be gone. And if your child relapses, you are not looking at the lovely 90+% survival rates any longer. You are looking at a whole different monster.

So, of course, we want to do everything that we can to prevent relapse, even if it means exposing Nico to more medications in the present. Every single ALL parent with whom we communicated said they would prefer the triple. Every single one of them and we posted the question on a list serv of ALL parents.

The kicker is that both Jeff and I completely understand and even respect our oncologist’s position. The bottom line is that he never deviates from the standard unless the child is in a clinical trial. He is not willing to essentially create his own protocols based on parents’ predictions of what the best care might be in the future. Yes, this is 100% logical. He is the point person for these clinical trials at our hospital, and he said that he was comfortable offering the option of the triple, but that he would not offer the option outside that clinical trial. Period. Jeff asked the doctor, “What if this happened to your child? Would he get the triple?” Without pause, the doctor stated that he would not deviate from the standard of care outside a clinical trial even for his own child. We both believed him. It is a hard line and judging by the swiftness of his answer he drew that line a long time ago. He is following the standard of care, and we all know (especially those of us that went to law school) that this is considered the best practice. That being said, Jeff and I would do anything to prevent our child from relapsing, especially in the cerebrospinal fluid.  Our doctor was sensitive to that. He told us over and over that he understood, but he also stressed that there was only a three percent chance. Three percent never seemed so enormous to us, but we understand his point.

It is a strange dichotomy. I think we might actually respect our doctor more for his position and for how compassionately he told us “Hell no!” But we would still both prefer that Nico get what appears the superior treatment (in a very large and long study by a very reputable children’s cancer research hospital). So we are left with the choice of leaving a doctor that we personally like a lot and really trust to find a doctor with questionable professional ethics that will do what we want (as non-oncologists, non-pediatricians and non-doctors). On paper it looks easy. In real life, it is miserable. We have to hope that this imperfect and cruel cure will work. We have to hope that our child won’t be one of the children that will inevitably play the role of sacrificial lamb in determining what treatment will be in the future of this evil disease.

As parents, we believe that it is our responsibility to make certain that Nico gets the best possible treatment. But what do we know about what the best possible treatment is? Maybe the best treatment is just finding a doctor that you respect, trust and believe is committed to providing the best care as it exists at present? Or maybe you follow your intuition and do something that looks illogical on its face trusting that you know what is best for your child? That has not actually worked well for us in the past, but that is a whole other post.

There is nothing easy in feeling powerless.  

Nico is home after a long day in the hospital. We arrived at the medical center at 8:00 am and Nico got some extra fluid in his IV (PICC) and then two different types of chemotherapy in his IV. One type is very nauseating, so the clinic pre-medicated him for that. Once he finished his chemotherapy, we went to the OR where Nico had a port placed, the PICC line was pulled, he got more chemotherapy (this time in his cerebrospinal fluid via a lumbar puncture) and received a flu shot. Apparently there was some difficulty placing the port, and Nico ended up with an extra (very small) incision. After the surgery, a wise nurse loaded him up with Fentanyl and rather than his usual screaming after anesthesia, he just seemed to sleep it off. When he finally woke up, he immediately demanded McDonald’s and recited his order to the recovery room nurse. Once we got home (after 6 pm), he ate chicken nuggets (don’t judge) and watched an hour of Dora the Explorer. When the local anesthesia wore off, he started to really hurt and the site looks terribly painful to me, but we are generous with oxycodone and will continue to be for the next few days. We are really amazed by how well he did. He is a very brave and tough little man, and we could not be prouder of him!

Nico will have to take additional chemotherapy by mouth at bedtime every night for the next two weeks and we will also be giving more chemotherapy via his port once a day over the next three days. The amount of chemotherapy is unbelievable really, especially when considering his age and size. But this is a result of his being “high-risk,” and we would rather treat him aggressively now and then be able to close this chapter for him once and for all. I say we will close the chapter for him and not for us because the reality is that once your child has gotten a diagnosis like this, you will never truly be able to relax again. It is just the reality of the situation. But we will do everything that we can to contain that fear so that it does not affect Nico. 

After sitting in the pre-op waiting room today, I can confirm that leukemia is not the worst condition to have. Trust me. So for tonight, we will be grateful that our little guy is home, doing well, and has a treatable condition. There is a solution. There is a cure. There is a light at the end of this very long tunnel. It will not be easy, but we can do this and we will do this.

Thank you for all your love. I have posted pictures of some of the awesome people that wore their Team Nico shirts today in support. Thanks again.

PS – Thank you everyone the Valentine’s! We even found a Valentine’s from Danny Briere (of the Philadelphia Flyers) – an autographed hat and two photos with special messages for Nico. We are continually amazed by all the love and support. Thank you.

Nico’s numbers are up, so he is going to surgery tomorrow to have a port placed and starting the new round of chemotherapy. Jeff and I are apprehensive and scared, but we are also eager to get started so that we can get through it and be done.

After an incredible amount of research and quite a few emails to our oncologist, we decided to enter Nico into the study, but he ended up being selected for the standard single medication protocol (as opposed to the triple medication protocol). We were actually disappointed, but like most everything else it is out of our hands and we just have to hope this is the lucky draw in spite of what we wanted. One positive that came out of this was that I think both Jeff and I now really trust our oncologist. Rather than being threatened by our constant questioning, he welcomes it, quickly responds to us and actually complimented us on our involvement. It makes the process a lot easier for us.

Another positive has come from a list serv where both Jeff and I spend a lot of time. Through it, we met another couple that has a child just six months older than Nico and was diagnosed just 3 weeks before him. Both of our boys have favorable cytogenetics and only missed being standard risk by one criterion. So even though this other couple lives in another state, we feel like we are going through this together. We email daily and I cannot tell you how many times they have allayed my anxieties. This whole process is frightening, but it helps to have someone else that completely understands your concerns and fears.





PS - If you got a Team Nico shirt, please wear it tomorrow to show your support and text me a picture! :)

On Thursday, Nico was supposed to go to surgery to have a port (to receive chemo through) placed under the skin of his chest wall, and then start the new intensive chemo. But the new chemo regimen is “count dependent,” meaning that they only administer the drugs when Nico’s neutrophil count (number of a certain type of white blood cell) is above 750. So Nico has to have weekly blood work prior to chemo, which will be on Thursdays from here on out. On Wednesday, Nico’s neutrophils were down to 400, so everything was postponed and he is again at a high risk for infection. We got very nervous when we heard Nico’s numbers because he did not get systemic chemo last week (only in his CSF), couldn’t understand what caused the drop and feared the worst. When we asked the nurse reporting the numbers to me why his count was so low, and if we should be worried, she replied “Well the doctor didn’t seem upset, so I wouldn’t worry about it.” Unfortunately, this is the caliber of nursing we get about 50% of the time and I find it disturbing, but that is another post for another day. We insisted the doctor call us. He did and reassured us that the marrow is resetting itself. He said that during the reset, the counts can change dramatically, but overall the blood work looked good and was improving. I feel like we have developed a rapport with our oncologist and we like him a lot. He always engages with Nico directly and he is very patient with Nico’s anxious parents.

The sooner we start chemo, the sooner this ends, and we are eager to put this behind us. That being said, this is a marathon, not a sprint and these delays are going to be commonplace throughout the next year. So for now, we are just enjoying a week off chemo.

Nico has started to walk again. He is very unsteady and clearly does not have coordination yet. So Nico and I have developed our own version of physical therapy. He can walk steady if he has something to hold onto, so we put his Buzz Lightyear and Woody dolls in an umbrella stroller and he pushes the stroller up the sidewalk by our house. He has been completely immobile for almost a month, so I was impressed when he made it almost a block length. It was great to get out of the house. Since the steroids have stopped, Nico’s normal smiley self has reemerged and the swelling is starting to subside.

Nico had his first visitor last night –one of his teachers, Miss Sophie. He was so happy to see her and immediately asked about his other teacher, Miss Alyana. Miss Sophie brought a book that the class made for Nico. Each page has a photograph of one of Nico’s classmates and a transcribed message from each child as well as a drawing. One child promised to build Nico a rocket ship, another promised a hug, one recommended blueberry tea and Ibuprofen. After Miss Sophie left, Nico asked me to read these messages over and over. I read the book at least six times, and then Nico asked if he could sleep with it. At 4:00 a.m., I woke up to the sound of Nico speaking softly as he turned the pages of his book. At each picture, Nico would identify the friend and add, “Loves Nico.” I was both touched and saddened. He had an independent life from his parents through Montessori school, and withdrawing from this life was a real loss to him. This book was so meaningful for my boy and I am overwhelmed by how much love has been shown to Nico and our family.  I assured Nico that he would return to school again. We talked about the seasons and the fall when he turns three.

I want everyone to know that we treasure every written word, every card, every gesture, everything. We are not in a place where we are able to convey our appreciation as we are too overwhelmed by this situation. But these things are sustaining us. If you do not understand what I mean, I hope that you never do. There is no way to totally comprehend what it is like to watch your two-year old child endure what Nico is enduring, but the support of your family, friends and community is a lifeline during times like this. Thank you.

Our oncologist met with us today just to go over the news and explain how this will affect Nico’s treatment plan. Even “high risk” kids with ALL (acute lymphoblastic leukemia) have a 5-year event-free survival rate (meaning the surviving kids do not relapse in the five years after treatment was started) of 88-90%. It is not the 93-95% that we hoped for, but it is still pretty good. The hardest part of being high risk is that the treatment is much more intense. Nico will get chemotherapy in higher doses and more often. Some of the doses will be so high that he will have to be in the hospital (as opposed to the out-patient clinic) for days at a time. And of course, the more drugs, the more possible side effects and complications. There are a gazillion potential complications (blood clots, bone damage, heart damage, central nervous system damage . . . the list goes on and on).

I would be lying if I said that both Jeff and I are not scared and grief-stricken. There are a lot of serious potential problems. But what are the options? Our oncologist started the conversation with, “It is what it is.” None of us have any control over this process. We just have to be thankful that Nico was identified as high-risk and will thus be treated appropriately even if the treatment totally sucks.

Just three years ago, the 0.04% blast (cancer) cells found in Nico’s bone marrow on day #29 of chemo would have been considered inconsequential and his marrow would have been deemed “clean” (thereby putting him in the standard risk category). The cutoff then was 0.1%. The technology that even allows them to detect such an incredibly low percentage is relatively new. When this technology became available, cancer researchers went back to bone marrow samples from children with leukemia in the 80s and 90s and found that children that later relapsed actually had these miniscule levels of blasts cells in their marrow, which was previously deemed “clean.” Based on this data, the new standard of 0.01 was set. So I guess we are lucky that Nico was diagnosed in a time when we have this information. Maybe we will see the survival rate of high-risk kids improve because of this? I hope so.  

I stated in an earlier post, relapse is a big issue in ALL. Ninety-five percent of these kids are in remission by day #29 (and technically Nico is too), but almost all of these kids would end up with cancer again if chemotherapy were not implemented long term (over 3 years for boys). One of the two big areas that are especially troublesome is the cerebrospinal fluid (CSF). Because of the protective mechanism in the central nervous system (the blood brain barrier), conventional chemotherapy does not pass into this area. So cancer cells hide there and then cause relapse. So oncologists aggressively treat the CSF and Nico will get at least 22 more lumbar punctures (spinal taps) and at each they will inject chemotherapy directly into the CSF. But there are some questions and on-going research in this area. St. Jude’s found in one study that by injecting three different types of chemo (as opposed to the usual one) into the spinal fluid at each and every lumbar puncture, they could eliminate relapse in the brain and spine. But are there serious long-term complications? Does it affect intelligence, ability to concentrate or reason? Data collected over the last 9 years suggests that it does not affect cognitive ability, but these findings are not conclusive. So the Cancer Oncology Group (our hospital is a member) has asked us to be in a trial that is specifically studying this. If we agree, Nico will have a 50/50 chance of either receiving the one drug (methotrexate) or the three drugs (methotrexate, hydrocortisone and cytarabine). If we decline the study, Nico will just get methotrexate alone.

We are struggling with this decision. Nico is so smart and witty and we are terrified of injecting all these drugs into his spinal fluid for three years. Likewise, we are terrified of a relapse, especially in that area, because the treatment for relapse is even worse than what we are already doing.

No one should have to make these decisions. No one should have to watch their child go through this. But “it is what it is.” We are here, life is not an easy journey, and all we can do is move forward.

Unfortunately, the results did not come back as we hoped. Nico’s bone marrow was still 0.04% blast (cancer) cells. This in combination with the 2% blast cells in his blood on day #8 of chemo means that Nico is at “high risk.” Statistically, the likelihood of a complete cure is still ok, but Nico will have to endure more “intense” chemotherapy than we had originally thought. We do not know much more. Our oncologist has asked us to meet with him tomorrow morning to go over what this actually means as far as Nico’s treatment.

We are heartbroken and there is not much I can say right now. Thank you again to all the people that have been so supportive. I wish that I had better news.

On Friday Nico had his second bone marrow biopsy and another lumbar puncture (spinal tap) with another injection of chemo into his cerebrospinal fluid. The results of the biopsy are very important, as they will determine whether he is average or high risk, but we likely won’t know until Wednesday. As soon as we know we will post here. We asked the oncologist the percentage of blast cells in his first bone marrow biopsy and he told us 100%. He told us that the blast cells were so dense that they could not be aspirated, which is why he performed a punch biopsy. This scared us to no end, but he assures us that this has no prognostic value whatsoever. After the biopsy on Friday, the physician reported that the marrow was liquid (as it should be), so that is good. Also, from Nico’s lab results (from his weekly blood draw), his marrow appears to be making healthy blood cells. His platelets were in the normal range and his neutrophil count was very close to normal. This is great news for numerous reasons, but we are mostly relieved that he is not at such a high-risk for infection, and we might actually be able to let people in our house again. This past month has been very isolating.

Again we want to tell everyone how much we appreciate your support. I started to try and thank everyone individually on this site and the post got too long. We are really deeply touched by all the support and love. Thank you.