Our last clinic visit was fairly unpleasant. When Nico started steroids we were warned he would “get the munchies” and “feel emotional.” Those were not just understatements. Those were outright lies. I understand not wanting to tell a parent, “And if you think it’s bad now! Just you wait!” But we were unprepared for what a month of high-dose steroids does. Our oncologist said that Nico has not had the very worst reaction he has ever seen to steroids, but he is at least in the top 25% of the worst. It is rough. The bottom line is that Nico does not look or act anything like Nico. He is unrecognizable and angry most of the time. So when we are at the clinic, Jeff and I usually take turns being bitten, hit and kicked while the entire staff and other patients endure the almost constant screaming of our sad little boy.

We get some looks. Sometimes they are looks of pity. Sometimes they are looks of annoyance. A few times I have felt compelled to explain that he is on steroids and is really a sweet and thoughtful little boy. But I guess he looks like a cancer patient now and it is hard to tell who he is under his steroid ravaged body. Nico is a breathtakingly beautiful, smart, funny and precocious little person. He is just undergoing a metamorphosis right now and eventually going to reemerge as the same gorgeous and soulful guy but with progenitor cells that make the right kind of white blood cells. So I got a stolen idea. I have to give credit to two people – Miss Sophie (Nico’s teacher) and my dear friend of twenty-six years, Brandy. In two different capacities and for different reasons they both mentioned shirts and the phrase “Team Nico.”

So we have decided that at every clinic visit, everyone that sees us will also see our little guy without the affects of chemo by wearing his pre-diagnosis picture right across our chests. I designed Team Nico shirts. Our photographer here in Salt Lake City, Amber Schiavone, generously provided a high-resolution digital picture for us to use. I will include a link to my tee-shirt masterpiece at the bottom of the post. The final product will be a little different from the link – the image of Nico will be oval, and a Custom Ink artist will redraw the B-cell on the back in black and white. The shirts are orange because that is the leukemia awareness color.

I do not expect anyone but our immediate family to order/wear the shirts, but my sister suggested I make the link available for anyone that might want to buy one (or just admire my incredible tee-shirt designing skills). The shirts are a lot cheaper if they are ordered en mass, so if you are interested in purchasing one, email me and I can try to put a list together. I want to make it clear there are no profits being made (well, except for Custom Ink). I am doing this as part of my effort to make this process easier for Nico by reminding healthcare providers that he is a person not just a patient, and to also send positive messages and thoughts into the healing universe (I’m really not a hippie, ok, maybe a little).

And while I am talking about profits, a few people asked if the tributes on Caring Bridge go to Nico’s treatment. They do not. Caring Bridge is a free website that runs and operates on donations. So in exchange for giving me the site, they get to solicit donations on my page. Seems fair. I think it is a great site and am not discouraging donations, but I just want to make it clear the donations do not come to us and we are not personally soliciting donations.

Also, please keep focusing on 0.000%. The biopsy is Friday (the same day the steroids end).

Wow, I’m really long-winded. Sorry about that, and here is the tee-shirt link -

http://www.customink.com/designs/teamnicoo2/ssx0-000t-ap0q/hotlink?pc=HL-76684&cm_mmc=hotlink-_-3-_-Body_txt-_-button1

Yes, Jeff and I have spent the last few weeks in a dark place. Words really cannot describe how we feel, but Jeff’s last post came as close as possible to doing that. Clearly, this is the worst experience any of us has ever had. Clearly, Jeff or I would happily change places with our precious boy. Without a doubt, the hardest part about all of this is watching our child hurt, knowing that he does not understand why the cure is so cruel, and realizing that this is going to continue for years of his life. Jeff’s previous post describes those feelings perfectly.

That being said, I believe our thoughts have power. I believe our thoughts are more important that our feelings. As tempting as it is to curl into a ball and let these feelings of overwhelming grief defeat us, we owe our “child of joy and light” (what my mom calls him) much more than that. I refuse to let this disease steal my hope. I refuse to let anger and grief steal anymore time or energy that would be better spent on helping Nico through this process. This process will cure him. 

There is very little about any of this that I can control, but I can control the way I think and speak. I can control me, and that is about it. I sincerely believe that all of our positive words, thoughts and prayers have helped Nico. After all, we got Trisomy 4 and 10 - the most treatable cytogenetics! So, I am again calling on anyone and everyone to help us in this last step of determining the curability classification. Nico will undergo another bone marrow biopsy next Friday. At that time, Nico’s bone marrow must have LESS THAN 0.01% blast (cancer) cells in order to classify him as an average risk. If he is average risk, his likelihood for a complete cure improves, and his treatment will be less severe. So again, when you are praying, meditating, chanting, thinking or even just having a passing thought about our little man, if you could just focus on 0.000% (just to be safe) we would be forever grateful.

This is a fight. And anyone that knows me at all knows that fighting is what I do best. This fight, unlike many of my past, I will fight with positive words, positive actions, positive thoughts, gratitude and most of all my love for Nico. Thank you for helping us.

by Jeff

During our first few days in the hospital after Nico’s diagnosis, our oncologist or the fellow said at some point, “you are adjusting to your new normal.” Adjusting. New normal.

There is no normal. Unless, “normal” has been redefined to mean: Nico’s hideous daily poisonings, administered almost entirely by Nico’s mom; bi-weekly spinal taps where more poison can be injected into his cerebrospinal fluid; monthly bone marrow aspirations that cause Nico so much pain he can’t sleep on his back or move for days. Normal is a tube sticking out of Nico’s arm. Normal is fearing that the cold that I got this week will kill my son. Normal is scanning lab reports for neutrophil and blast counts. Normal is reading about cancer in our spare time. Normal is antibiotics, steroids and prilosec (to prevent ulcers caused by the steroids). Normal is watching Nico, once the friendliest, care-free and happiest little creature I have ever known withdraw to his closet and scream at us to “go away” because he is tired of endless medications and line-flushings. Normal is holding my two-year old as he whimpers “bed” because he is too tired and in pain to play. Normal is the momentary and now extremely rare flash of glee on Nico’s face when he is able to walk from his bed to the kitchen exclaiming, “Daddy, Mommy, Nico walking!” Normal is the unbidden and uncontrollable resentment that wells up when we see other parents with healthy children disciplining them or snapping at them for some insignificant infraction. Normal is the realization that karma does not exist.  Normal is wondering if we will go bankrupt before Nico is finished with treatment. Normal is crying every day. Normal is worrying that our child will suffer for three years, only to relapse and have to do it all over again. Normal is wondering if our son will ever laugh again.

There is nothing now but cancer. It informs and dominates our entire existence. Every decision, no matter how minute, is preceded by the inquiry, “How will this affect Nico’s immune system?” Things that used to be handled with a little Tylenol and equal doses of love and care are now emergencies. Temperature over 100.4? Then we go to the hospital for whatever wretched series of tortures await along with the agony of wondering if his fever is life-threatening. Got a cold? Get him to the hospital, because that can kill him, too. We have called the Clinic so many times they must know it’s us on the phone without asking our names.

We live in a constant state of depression punctuated by intermittent avalanches of fear and panic. Nico cannot play with other children, or even be in proximity to them. We had to withdraw him from his pre-school that he loved and he does not understand why. He cannot even be around adults who are habitually around children, or really, around any adults other than his parents. Shannon driving Nico in the car around town for a few minutes is his sole outside-of-the-house pleasure. Today, Nico wanted to walk, but was too weak to put on his shoes. He asked us to put on his shoes and simply carry him around the house. That is a good day in our new “normal”.

We are enmeshed in a prison of microscopic cells, but the walls might as well be concrete and barbwire. How does parent adjust to that?

Good News – Nico’s cytogenetics came back 4 and 10 (and a couple of others that are also favorable). Nico still had blast (cancer) cells in his blood today, but they are down to 9% from 71%. Ideally the percentage would be lower, but because of the favorable cytogenetics, his doctor expects that Nico will be in the low-average risk group and that increases his long-term survival rate to approximately 93%. We will take those odds. The final determination will not be known until the end of the month when he has another bone marrow biopsy, but we are cautiously optimistic.

So far there has been a lot of things for which to be thankful. Nico’s leukemia is the most common childhood cancer and thus a lot of research has been done studying treatment options, long-term effects of treatment, survivability, etc. Because of this, Nico's treatment will be tailored specifically to him based on the results of his bone marrow biopsies and blood tests. In addition, Nico’s cerebrospinal fluid did not have any detectable leukemia cells, so this eliminates the needs for two additional chemo drugs that would otherwise be injected into his cerebrospinal fluid at specific intervals. He will still get one type of chemo (he had it today), but there are much fewer long-term issues with the single chemo as opposed to three. Most importantly, he has favorable cytogenetics and that means his type of leukemia is very likely to respond to the chemo typically used in treatment.

The treatment still completely sucks and it is still long (6-9 months of intense and 2.5 more years of maintenance). Nico is in pain, no longer plays, gets overwhelmed very easily and cries a lot. But the other parents in our boat tell us that this will pass when he gets off the steroids. He is essentially having roid rage on top of losing control on top of having constant pain. But we are trying to stay positive, think positive and focus on the good news (I say after listing the negatives). Another positive was that Nico’s oncologist reacted appropriately when we told him about the lack of communication. I won’t bore you with the details, but we now have his doctor’s pager number and email address and can contact him directly if needed. He also made a copy of Nico’s chart for me, including all his current orders, labs and medications so that I can double-check the nurses. Hey, we are ultimately responsible for our son’s care, and I am not taking any unnecessary risks. It was all handled professionally, so I guess we won’t be driving out of state in the next few weeks.

Again thank you for all the support. We are deeply touched by the outpouring of love and concern. Thank you.

First, I want to tell everyone that has called, sent texts, emailed, written in the guestbook, watched our dog, offered to help, donated blood, made us dinner, visited us, sent gifts and cards to Nico, read these posts, kept us in your thoughts and prayers, or even just thought kindly towards our sweet little boy, THANK YOU. Please forgive us for not responding directly. I cannot contain my sadness when I speak about it, so I just do not speak unless I am forced to do so. Your gestures mean the world to us. They honestly keep us going. We read every word to each other (over and over sometimes). Thank you from the bottom of our hearts.

Second, as I stated before we are awaiting the results of the cytogenetic testing of Nico’s leukemia. I am not a scientist, but from what I have gathered, leukemia occurs when the progenitor cells responsible for pumping out white blood cells screw up the white blood cells’ chromosomes. This can occur in various ways. Some of these chromosomal changes have much better outcomes than others. It makes a huge difference actually. So if all of you good people out their pulling for Nico could just concentrate on trisomy 4 or 10 while you are thinking or praying about him. These three chromosomal aberrations have the best (by far) prognosis. We are not trying to get all new-agey, but this is all we can do for our little boy – send him as much positive energy as we can, pray for him, meditate on him, and think as many positive thoughts as we can while crying five times a day. So in an effort to concentrate on what we want, instead of what we do not want, we are pulling for 4 or 10.

Now, on to the complaint portion of my entry ---

Nico stopped walking. He kept asking to be held and carried and at first we thought the he was just feeling insecure. Then last night, I set him in front of his bookshelf and asked him to pick a bedtime story. That was when I saw him struggling to walk. He sort of limped and then toppled over. I called the clinic and they told me just to “watch him” that he is still recovering from the hospitalization. This morning was worse. He would not even attempt to take a step and if he is even asked to stand on his own, he cries. We called the clinic again. I considered just taking him to the hospital, but his white blood cell count is so low now from the chemotherapy that any exposure at all to any illness could be deadly to him. We waited hours and never heard back from the clinic. I ended up signing up on a list serv of mothers with children that have ALL (the type of leukemia that Nico has). I posted my concern and immediately had sixteen responses that this is totally normal. All of the mothers that replied stated that their young children stopped walked during the induction phase of chemotherapy. Some of the children did not start walking again for months. The explanation was that the leukemia cells themselves and/or the Vincristine (one of the chemotherapeutic agents) causes bone pain and walking is so painful that coordination is lost. On the one hand, I was relieved that it was not permanent. I had imagined that he had internal bleeding that was compressing his spinal cord. I was really terrified. So finding out that is a temporary and “normal” side effect of the disease is a relief. On the other hand, discovering that your 2-year old baby is in so much pain that he cannot walk is deeply upsetting.

We called the Clinic again, just to double check what the Momcologists on the Internet reported, and again we have not received a callback. I am really angry about the care we have received from this hospital. This entry would be too long if I listed how many times the ball has been dropped, but this is totally unacceptable. We have played nice, been understanding, and luckily no serious injury has occurred, but both Jeff and I are now mad. None of our issues are with our doctors. But the medical center as a whole has not functioned as it should. Tomorrow will be interesting since we are due back in clinic for another lumbar puncture (spinal tap) and chemo session. Things will have to shape up, or we will take Nico to another hospital even if that means going out of state.

We are home and we are all much happier here. I will take care of Nico’s central line here at home and take him back to the hospital once or twice a week for chemotherapy and periodic bone marrow biopsies and spinal taps. He will not have to be hospitalized again unless he gets a fever. We are desperate to prevent another hospitalization and thus we will do everything we can to prevent a secondary infection. But the reality is that most kids with leukemia get secondary infections during treatment that require hospitalization. Usually these infections arise from the normal germs that live on their bodies and really cannot be prevented. Despite this, things do not seem as dark or scary now that we are in our own house and Nico acts more like himself here.

The following is something that I wrote while we were still in the hospital. It is old news, but if you were looking for another reason to avoid hospitals, then this might help –

After the last two days and nights, we were all in a very dark place. I had no idea how much disparity exists between nurses. In the past I always felt defensive for nurses when people complained about theirs, but after being on this end, there really are quite a few people working in healthcare that should probably do something else. The hard part is that Nico will be on chemo for three years and I will see a lot more of the people I desperately want to take to the mat. So I am doing my best to play nice while still advocating for my son.

There is a lot of pain and discomfort in this whole process, but I think the hardest part for Nico is actually the lack of control and freedom. How would you like to be in a dead sleep and have someone shove an ear thermometer in your ear? Or have stranger after stranger lift up your shirt and push on your sore, enlarged belly (liver) without asking? For some reason, because he is a child, people do not think they have to ask him or tell him before they do invasive things to his body. Of course Jeff and I try to mitigate the problem, but most of the time we are also asleep or not expecting the contact either. Some are better than others and there is some serious anticipation at change of shift because you are about to find out how good or bad your day or night is going to be by the nurse that walks through your door.

There was a moment a couple of nights ago when Nico was allowed be disconnected from his IV pole. He was so excited just to run freely. He was laughing and running around the room when someone opened the door and like any two-year old made chase. My sister, Jessica, and I headed out after him. It was the first time in days that my little boy acted like a care-free child. He was full of joy and for a moment everything seemed normal. When we caught up to Nico (who had only made it a few yards) his nurse hurriedly approached us and while speaking to Nico reprimanded me – “You are not allowed in the hall without socks!” She then grabbed his foot and started to force a sock on him. He naturally objected. She scolded him – “You can’t be out here then. You will have to wear socks or stay in your room!” Both Jessica and I were shocked and attempted to comply, but Nico’s moment of normalcy was destroyed. He was again a sick child, in a sad place, without any say about anything happening to his own body. Nico became absolutely hysterical. He no longer wanted to play and repeated “room, room, room” while he sobbed.


Once back in his room and settled down (which took a while) he asked for markers and his “buddy.” A buddy is a doll that the hospital’s child advocate gave him and it is basically supposed to be him – it wears a hospital gown and has an IV like Nico’s. When he first arrived he was given markers and he drew what was supposed to be a little face on it. So we gave Nico his buddy and markers and he immediately flipped the doll over and said “buddy’s back.” He then started to mark on the doll’s back exactly where he had his bone marrow biopsies the day before. The procedure did not go well because they were not able to aspirate bone marrow and instead had to take punch biopsies. Nico’s lower back (around his hips) was swollen, bruised and bled pretty badly. By that night he could not reposition himself from the back pain. So Nico began to color buddy’s back exactly where the biopsies were taken as he softly repeated “buddy’s back.” After he spent a few minutes doing this, never coloring anywhere but in the area where he was hurt, he then said, “buddy’s shoes” and colored shoes on his doll. It was heartbreaking, but I really marveled at how this little two-year old processed these traumas. Socks and shoes may sound trivial, but we have zero control here. He cannot eat, drink or sleep when he wants. He is confined to a small area for immunocompromised patients, and since the sock incident he refuses to walk in the hall. Hospitalization is hard enough for adults, who have some understanding of the rationale behind the treatments, but Nico is two-years old and none of this makes sense.

Yes, it is ideal to wear shoes in a filthy hospital. Yes, my son has a compromised immune system. But based on common sense and what three different hematologist/oncologists have told us, Nico will not and cannot live in a sterile world. One oncologist told us that there is zero data actually showing that the masks that you see oncology children wearing do anything to prevent infections. Another oncologist told us that the only reason that they even recommend masks at all is because it makes some families feel safer. Basically, Nico will have to avoid confined areas that contain large groups of people, especially children, for the next six to eight months. Nico cannot and will not electively be around anyone that is sick with even a small cold. But the reality is that Jeff or I will probably have at least one cold in the next six to eight months. Nico will have to wash his hands often and anyone visiting our house will have to wash their hands. We will minimize his risks, but it is very important that Nico still live as close to normal as possible. Nico does not use his feet to eat, or rub his eyes, or pick his nose (a favorite pastime) and feet can be washed. It was important to let Nico have a break from his reality and he could have been persuaded to wear socks in another moment and in another way. So I guess the lesson for Jeff and I is that we must learn to protect our son from real dangers, minimize as much risk as we can, advocate for him and give him as much of a life as his immune system will tolerate. The hardest part will be accepting that we cannot really control anything about this process. We have to trust that there is light at the end of this tunnel even if there are more tunnels beyond that.

Every time I try to update our page, something happens that pulls me away and then changes the entire course of what I was going to write. This morning we were told that Nico could go home after: platelet transfusion, red blood cell transfusion, chemotherapy and an echocardiogram. Cool! Except then Nico had a transfusion reaction after the platelets and started to go into anaphylaxis. Jeff, Nico’s nurse and I were in the room when it happened, but Jeff was the one that caught it. Jeff commented that Nico’s eyes were red and I replied he was just tired. Then Jeff said his ears were red and insisted we pull up Nico’s shirt. Under Nico’s shirt, hives were popping up before our eyes. Within 30 seconds, Nico’s eyes were swollen shut and covered in hives and he started coughing pretty violently. Our nurse took another patient’s Benadryl and hydrocortisone rather than wait for the pharmacy (thank goodness for her) and the doctors were in our room in less than two minutes. By that time, Nico's back was one giant hive with a tiny strip of pale skin running down the middle. Nico is doing better now but his eyes are still swollen. We just begged the physicians to let us out of here. We can come back for the rest. I am not sure how much more any of us can take, especially Nico. They still wanted him to get the echocardiogram, but when we tried to transport him he hit us, screamed bloody murder and attempted to hurl himself out of our arms. He won that one. This little boy has been through so much in four days, and he has rightfully said “enough.”

Please forgive my sloppiness, I'm writing quickly and on very little sleep or food. I just wanted to answer the most frequently asked questions. Nico's leukemia is subtype B Lymphoblastic Leukemia. This is the most curable type, but it requires three years of chemotherapy. Yes, I typed years. The first 6+ months are "intense," but the following 2.5 years he will lead a more normal life. The treatment is longer for boys because leukemia cells will hide in certain areas of the body and one of them is the scrotum. When treatment times were shorter they found children thought to be cured developed testicular cancer years later. The other problem site is the brain, which is why Nico received chemotherapy in his cerebrospinal fluid fluid yesterday as well as in his blood stream. The chemotherapy changes month to month, so every month will be very different. He will not lose his hair until the middle of the therapy (in about 3 months). We will not know whether he is considered a low, average or high risk for recurrence until after the first month. One of the ways in which this is determined is by periodically looking at his bone marrow and spinal fluid, so he will have to endure bone marrow biopsies and spinal taps periodically throughout his treatment. Thankfully, they will always put him under anesthesia before they perform a tap.

A lot of people have asked us if we saved his cord blood. Our primary hematologist/oncologist states that this would not be of help. He stated that new research has found that when they look at blood samples taken at birth from children that later developed leukemia, they have found primitive leukemia cells and there is a question now about using the cord blood of children that later develop leukemia.

A few people have also asked if he will be sterile from the chemotherapy. The doctors assure us that this is no longer true because the chemotherapy has become so specific and have much fewer long-term complications. He actually told us that one older patient actually became a father while on chemotherapy (I guess he was not feeling too sick).

I want to stress that this type of cancer has a great survival rate and this is long-term survival, not 5-year survival. But the treatment is really horrible. My loving, affectionate son now flinches when approached my strangers and this breaks my heart. I know that children are resilient and hopefully this can be undone. For now, he understands that everyone is potentially dangerous and he frequently puts his hand up and yells "no doctors" when he sees anyone in scrubs.

Thank you for your words of encouragement. It means a lot to both of us to know that people care for our little boy. 

Nico started Montessori school last August and loved it. His class meets four days a week for 3 hours a day, and this was the perfect amount of time for him to get his fill of other kids and away from boring ol’ mom. Prior to this, Nico spent very little time around other children, so we were not too surprised when Nico started catching colds and running fevers. All kids seem to go through this the first year they start school, but by December Nico was on his fifth round of antibiotics. I started expressing some concern to Nico’s pediatricians that there might be something wrong with his immune system, but on that very doctor’s visit, Nico tested positive for influenza and this seemed to explain at least the latest bout of fevers. In the middle of December, Nico’s school’s winter break started, and within a week Nico again started having fevers. We could not blame his exposure to other children this time, but then again, both Jeff and I had chronic ear infections as children and we thought Nico might just be following suit. Looking back, the odd thing was that Nico rarely had a stuffy/runny nose, cough or any other cold symptom other than fevers and then eventually his ears would start to look suspicious and he would start another round of antibiotics.

On January 2nd, after Nico again started running fevers, and Jeff and I took him to our pediatrician to get his ears checked. We were supposed to go on a trip the following day, and we were worried about his ears on the plane. The doctor asked “is he always this pale when he’s sick?” I was struck by this question because a few days earlier my dad had mentioned that Nico looked incredibly pale. I had also noticed that he was on the whiter side, but since he had been sick I did not read too much into this. The doctor suggested that we check his hemoglobin (just a finger stick in the office) and asked me if Nico had any unusual rashes. I immediately started thinking about leukemia, but I told myself I was just being a paranoid first-time mom. A few moments later, the nurse’s aide popped her head into the exam room and announced that his hemoglobin was 5.5. Nico’s pediatrician looked surprised and said, “I was not expecting that. It’s probably inaccurate, sometimes finger sticks are. So why don’t you just stop at the lab and get a blood draw.” She was extremely apologetic and reassured us that this was probably not anything serious, just anemia from the recent flu infection. The thought I was having about leukemia became overwhelming and even though I was sure that I sounded completely neurotic, I asked if the labs that she was ordering would indicate if he had leukemia. She said that they would and that this had also crossed her mind, but again she reassured us that that was unlikely.

Jeff, Nico and I loaded into our car and headed to the outpatient lab at Primary Children’s Hospital. I started crying on the way. I had this horrible feeling, but I kept telling Jeff and myself that I was just needlessly worrying. When we got to the lab, outside sat a pale and bald little girl in gown, clinging to her IV pole with her parents who looked to be 500 years old. I started crying again. After the draw, I convinced myself that everything was fine and we all went about our day. The doctor stated that someone from her office would call us with the results, but by 4:00 pm, we had not heard anything and I called. When I said I was calling about Nico, the woman answering the phone stuttered and said, “the doctor is going to call you back today… she’s just waiting on one more result.” Jeff and I both knew this was a bad sign. Why did the receptionist know Nico? Why did she sound so clearly nervous? Why is the doctor calling us back herself? Around 6:00, the doctor called. She told us that it took a long time because she had a hematologist/oncologist check the slides of Nico’s blood himself. She said that Nico’s blood was highly suspicious for leukemia. She told us that the Emergency Room at Children’s Hospital was expecting us now and that Nico would be staying there. She started to cry at the end of the call. I want to emphasize here that I really believe that Nico's physician caught his leukemia much sooner than most other doctors would have and we are incredibly thankful to her.
So it began.

Nico was diagnosed with acute lymphoblastic leukemia. Apparently, if you have to have leukemia, this is a pretty good kind to get. Not because the cure is not complete hell, but because there is a cure. In the first two days, Nico went through blood draw after blood draw after blood draw. This was followed by blood transfusion after blood transfusion after blood transfusion. He actually looked a lot better after the last transfusion and we were both struck by just how pale and gaunt he had been that first night in the emergency room. But this tune up was to prepare him for the course that started today – spinal tap with an infusion of chemotherapy into his cerebrospinal fluid, bone marrow biopsy and a line placed for the chemotherapy that started tonight.