After a great week off, we restarted chemotherapy today. The chemo Nico received today makes him feel nauseous for a few days, but we have medication for the nausea and at least it is not the chemo that causes neuropathy and makes it difficult for Nico to walk. So, it is a relatively good chemo week for us. There are no lumbar punctures this month, and we are truly grateful for that.

So many people have done so many kind things for us, and I would literally write a novel if I tried to acknowledge everyone. But since I am posting a picture of Nico and his new quilt, I thought I would mention that this quilt that came from Nico’s school. All of his school friends used fabric paint to put their handprints on it and the quilt is just lovely. Nico’s teachers (Miss Alyana and Miss Sophie) presented the quilt to him, and Nico felt so special (the picture makes this obvious). I am also including some pictures of Nico taken today after chemo. As you will see, he looks great and is handling everything like a true warrior (if you are reading this on Caring Bridge, you can find the pictures on WarriorNico.com, right after this post).

When Nico was first diagnosed, I tried to find a children's book that would speak to a child Nico’s age about struggles and trials while still imparting hope. I did not find anything online (and stores are pretty much off limits now). Then I picked up a book Nico had gotten for Christmas to read to him, and found that we already owned the book for which I was searching. Jeff and I read this book to Nico frequently. Sometimes it makes me cry, but it always gives me hope. I am going to include part of it here. Thank you, Dr. Seuss.

All Alone!
Whether you like it or not,
Alone will be something
you’ll be quite a lot.

And when you’re alone, there’s a very good chance
you’ll meet things that scare you right out of your pants.
There are some, down the road between hither and yon,
that can scare you so much you won’t want to go on.

But on you will go
Though the weather be foul.
On you will go
Though your enemies prowl.
On you will go
Through the Hakken-Kraks howl.
Onward up many
A frightening creek,
Though your arms may get sore
And your sneakers may leak.

On and on you will hike.
And I know you’ll hike far
and face up to your problems
whatever they are.

And will you succeed?
Yes! You will indeed!
(98 and ¾ percent guaranteed.)

KID, YOU’LL MOVE MOUNTAINS

So…
Be your name Buxbaum or Bixby or Bray
Or Nicholas John Snow Tibbels O’Shea
You’re off to Great Places!
Today is your day!
Your mountain is waiting.
So … get on your way!


From: Oh, the Places You'll Go! By Dr. Seuss

Nico’s fever broke Tuesday night and we went home Wednesday on IV antibiotics (every 8 hours) because Nico’s ANC (absolute neutrophil count) was still a big fat zero (and it needed to be at least 500). By Wednesday night I was back on the phone with the clinic since he developed a really strange looking rash on his neck. It looked like ringworm – big, bright red circles! I was cursing myself for letting him play outside until I gave him his next dose of antibiotics and the “ringworm” spread all over his body. He is allergic to Cefepime. We took him to clinic on Friday to get a doctor’s opinion on the rash and recheck his neutrophil count, and lo and behold his ANC was 800! He went from zero neutrophils to 800 in 48 hours! I cannot even explain how excited we were. This is the highest his neutrophils have been in weeks. We were even able to take him to a not-crowded shoe store to buy sandals that fit. I do not take these kinds of things for granted anymore. Nico has not been inside any store since before he was diagnosed January 2nd. You would have thought he was at Disneyland – gasping at everything and saying, “Oh wow!” Yesterday was a good day and we plan on taking advantage of this week off of chemo, especially now that we know his numbers are up a little. I am still too nervous to expose him to too many people, but we will definitely venture outside a bit more. It could be the last time that we can for a while. He will finish the Consolidation phase the middle/end of April and the two phases after that are supposed to be doozies. I try not to look to far ahead, but our doctor did tell us that on a scale of difficulty from 1-5, the next two phases are 4.

I am updating you from our prison cell. So far, Nico’s high temp for today was 104. Nico’s ANC (absolute neutrophil count) is holding steady at ZERO for at least the 6th day in a row. On a positive note, none of us have been water boarded. Then again, there is still plenty of time for that since we are not escaping anytime soon. Our release requires either a dramatically improving ANC, or an absence of fevers for 24 hours and the last fever was 2 seconds ago. It is safe to say that because of the ANC, Nico will not start the next phase of chemo on Thursday. This is fine by us because Nico needs a break! The week/s off will delay/s his chemo end date, but as they say – this is a marathon not a sprint. There are still at least 5-6 months left of intensive chemo and then a little less than three years of maintenance chemo.

In spite of the fever, Nico seems to feel pretty good. The only sign that there is anything wrong is that he refuses eat. He is still playing, laughing and flirting like crazy (he had a thing for Latin women). In fact, he feels so well that he keeps begging, “Open door!” Nico is not allowed into the hall, much less the play area. We are not even supposed to keep our room door ajar. The physician that saw Nico on admission to the hospital (not our regular oncologist) tried to explain that it was “safer” for Nico to be sequestered. This doctor very knowingly nodded while she responded to my questions with a not-quite condescending “the room is the safest place for him.” Every Tom, Dick and Harry in the hospital comes into our room all day long – residents, fellows, nurse practitioners, nurses, nurse’s aides, social workers, meal deliverers. They wear the same shoes in our room that they wore into every other room in the hospital and traipse all over the only tiny space where Nico can move and play. I was not buying the “for Nico’s protection” argument. The oncologist that started seeing us on Monday, however, seemed like a straight shooter. So I re-asked, “Why are we confined to our room again?” VINDICATION! Aside from hand washing, there is very little data that shows that these “precautions” have any benefit at all. Add it to the list of rules that have no evidence to support their existence. There are so many! The doctor today did at least raise a plausible argument for our captivity – “If Nico has a virus, he could potentially pose a threat to other patients.” This proposition also lacks any real evidence behind it, and assumes that Nico will lick or wipe snot in public locations, but the latter is fairly plausible. So we will continue our compliance just in case. At least it makes more sense and the doctor implied that we might be able to run the halls at night if no one was around.

I am learning all kinds of things through this whole experience. I have learned that most of what people say is wrong or at least not totally accurate. None of us know as much as we think we do. I definitely include myself. What do I know? Of all the things that I think I know, how many of them do I really know are true? How much of my “knowledge base” was gleaned by listening to someone that really did not know what he/she was talking about? The people that I trust the most are the ones that admit they do not know all the answers. The doctor today did that. We had a whole conversation about “neutropenic precautions” and how difficult it is to determine what good they actually do, if any. It is important that we like our doctors because they comprise most of our human contact these days. Nico grabbed the doctor from today around the legs as he was trying to leave and started screaming “No!” the doctor looked confused and I explained that Nico enjoyed his company. Nico might need to be re-socialized after the intensive phase is over. J His parents might need that too (I admit having the please-don’t-leave-us-here feeling that Nico displayed).

Our doctors reassure us that unexplained fevers and long hospital stays are a normal part of treatment. They tell us that Nico looks good and that fevers and neutropenia are a normal consequence of the chemo. So we will wait for it to pass and find ways to entertain ourselves in our cell. Being stuck in tight quarters has given me a chance to further bond with my little boy, something that I did not think was even possible. Nico is funny.  In 6 days, he is officially two and ½ and he already thinks (knows?) that Jeff and I are complete idiots. When we were admitted on Saturday night, there was a baby in the ER crying. Nico has talked about that baby everyday since – “Baby sad. Baby scared. Baby needs McDonald’s.” When I told him that babies do not eat McDonald’s, he scoffed, shook his head and said “babies have McDonalds, mom!” He said it with complete contempt for my stupidity. When I explained that the babies drink milk from their mommies, he actually pretended to gag and laughed like I had told him a dirty joke! I do not know where he gets this stuff, but we do have a good laugh and that really is the best medicine anyway.

We are in the hospital. Nico started having unexplained fevers last night. Fevers plus zero neutrophils equal hospitalization. The oncology clinic (who we call with this kind of stuff) called the ER before we arrived, and they had IV antibiotics ready to go when we walked through the door. As of now Nico continues to have fevers, but it has only been 18 hours. Please start working antibiotics! And thank you Alexander Fleming! I am hoping a show of gratitude will somehow help. The fact is we have lost all control over our lives, and complaining is not going to accomplish anything.  So for now, we will be grateful that Nico is in the safest place possible and just wait patiently for the medication to work (not really on the patient part, who am I kidding?).

Nico’s Aunt Jessica visited him a few weeks ago. Aunt Jessica had some brilliant and fun ideas. Since Nico cannot be around other children right now, we threw a party for his non-human friends. Who knew Buzz Lightyear, Woody and Mac the truck were all born on the same day? I am posting pictures (dated 03/09/13) from the birthday party we threw in honor of our friends from Pixar. Nico made the cake himself with a little help from Aunt Jessica who burned a box cake and didn’t know that round cakes stacked on each other! BAHAHA! I love teasing my little sister, who is clearly the baby of the family. Her visit was really a bright spot for all of us and we love her very much. Thank you, Aunt Jessica.

There is a strident rule in nursing: no matter how close it is to the end of your shift, you never, ever, under any circumstances describe the shift as “quiet” or “slow.” If you do, the other nurses will fiercely reprimand you and within minutes everything goes to hell – someone codes, a bedridden patient has an episode of diarrhea, a psychotic patient decides to “breakout,” admissions arrive and everything happens all at once – the magic in your own words will destroy the peace that you dared to acknowledge. It has been very difficult for me to reconcile this belief (or at least fear) in the magic of the jinx with my belief (or at least hope) in the power of positive thinking.

So with that, it is with great trepidation that I write that Nico is doing well, we have had a pretty darn good week (relatively speaking) and we are really grateful for this reprieve (I am knocking on wood as I type).

ALL (acute lymphoblastic leukemia) is cured in phases and each phase has its own name. This week marked the middle of the second phase called “consolidation.” This phase is marked by the weekly lumbar punctures (spinal taps) accompanied by the injection of chemotherapy into Nico’s cerebrospinal fluid. Nico is put under anesthesia for all of these punctures (and we are thankful). There will be 22 lumbar punctures like this throughout the three and a half years of treatment, but after this month, they will be dispersed farther apart. One of the common occurrences at the halfway mark of consolidation is that white blood cells take a serious dip. The parents of kids with leukemia plan their lives around one particular lab value, the ANC (absolute neutrophil count). This number gives us some idea about how susceptible Nico is to infection. When this number is low, a fever (even low-grade) will require hospitalization. The lowest end of normal is 1,500. As of today, Nico has exactly zero neutrophils. Jeff and I were both disturbed by this initially, but our doctor and the clinic nurses say that this is not uncommon. So I guess we won’t be visiting Chuck E. Cheese or public swimming pools anytime soon. We try not to live in a bubble, but since secondary infections kill more kids with leukemia than leukemia does, we have to be fairly neurotic.

Nico has done amazingly well this week – making jokes, acting silly, laughing hysterically and playing with his old vigor. His age and subsequent communication limitations probably mask some of his own difficulties dealing with the changes in his life, but Nico also clearly lives in the present. As one of his nurses said: Children do not let cancer define them. They continue to live life like children with the interruption of needle sticks, chemo, fevers, nausea and neuropathy. Jeff and I cannot say the same as our lives are consumed with leukemia while Nico’s life is consumed with learning how to manipulate the child locks on the candy drawer. Nico is happy when things go his way even when just moments before the whole world conspired against him. That being said, each week when I put numbing cream on his port, even though it is painless, he starts to cry. He knows what is going to happen after that cream goes on his tummy. But Nico continues to be Nico and his parents continue to look to him as a guide in how to cope. He is our teacher in this process.

So tonight I will take a deep breath and try to enjoy this moment. Our little boy is safe at home and happy.

… and Damned if You Don’t.
By Jeff

As you have probably noticed from many of Shannon’s prior posts, one of the myriad of things that is excruciating for a parent of a child with cancer is the constant decision-making that you have to do. The reverberations of the choices that you make could echo into the future with horrible, benign or fortuitous consequences. You simply do not know.

On Thursday, Nico was scheduled for two IV doses of chemotherapy in the clinic and more chemotherapy via spinal tap in the rapid treatment unit. This is not unusual. Unfortunately, due to the nature of the treatment, Nico’s blood counts (white blood cells, red blood cells, platelets, hemoglobin, etc.) depress and recover week to week. For certain procedures (such as the port placement), if his absolute neutrophil count (basically, a calculation of the number of white blood cells he has to fight infection) is too low, then the procedure must be postponed.  If his platelets are too low, then he needs to get a platelet infusion. If his hematocrit is too low, then blood infusion and on and on. Each week when we go to the clinic for Nico’s chemotherapy, his blood is drawn and the hospital does labs to see if Nico needs transfusions in addition to scheduled drugs and procedures or if some number is too low, whether treatment needs to be postponed to give him a chance to recover.

So, Nico’s blood was drawn and his labs came back with low numbers, particularly platelets and hematocrit. Our oncologist was not in clinic and a doctor we did not know told us Nico would need blood and platelets but that he would get them AFTER the spinal tap. Now, I am not a doctor. If my aptitudes in science extended beyond photon torpedoes and the Death Star I would have become something far more useful to mankind than a lawyer. However, it seemed to me that if Nico’s platelets were so low as to require a platelet transfusion, then it would make sense to give it BEFORE someone stuck a needle in his back. Again, I didn’t go to med school, so what do I know, but it sounded like the proverbial barn door being shut after the horse ran off. Shannon, who actually does know something about medicine, agreed with me and quickly spoke with a neurologist friend as to what made sense. She also floated the issue to our leukemia list serv. The neurologist and about 95% of the list serv responders stated that Nico’s number was low enough at their hospitals that he needed the platelet infusion and it must happen before the procedure. 

I asked the several people in the rapid treatment unit (two nurses and an anesthesiologist) what the standard of care was for platelet transfusion and if post-procedure transfusion was OK. They did not know and could not state the standard of care. Shannon and I were adamant that someone actually state the standard of care and provide reasoning for how they were going about this made any sense. The clinic receptionist told Shannon, “The doctor makes that decision, not you. This is the way it is going to be done and it’s not your choice.” Uh, no. Actually, we the parents make the decisions, which include flipping you the bird and taking our kid someplace where patients (children) are not treated like Rhesus monkeys. All I have to say is that this guy was lucky that Shannon was not physically near him when he snorted that condescension to her on the phone or he would have needed a few transfusions of his own.

Then, I spoke to the nurse practitioner performing the spinal tap and she was able to articulate the standard of care and why it was so at this hospital. It made sense to me as a layperson, but Shannon’s friend the neurologist had been rather emphatic that the platelets should come first. And the list serv responders had said the same thing had been their experience. One of these things does not look like the other…

Decision time.

Do we insist that the infusion happen before the spinal tap or not? Do we take our kid and go home? Or do we trust that this doctor we don’t know is making the right call and let our son get a needle in the back and hope that he won’t get a bleed into his cerebral spinal fluid which will compress his spine and permanently paralyze him? Shannon and I have to make decisions like this all of the time. It is truly terrifying to know that you could be making a choice that could hurt your child. I do not know how we are going to get used to living like this.

I chose to proceed with the spinal tap, which went well (although he has an ugly bruise on his back, which he has never had from a spinal tap before – it makes us nervous). Unfortunately, when Nico was administered the platelets five hours later, he had an anaphylactic response (hives, rash, puffiness and vomiting). Because it was not entirely clear whether Nico was reacting to one of the chemotherapy drugs or the platelets, the medical staff elected to keep him under observation overnight and we stayed in the hospital Thursday night. We are happy to report that Nico has recovered, looks well, and was discharged from the hospital this afternoon (Friday). Our oncologist’s best guess is that Nico reacted to the platelets (he had a similar reaction to platelets in January and the chemo drug was administered several hours before the platelets this time). However, what is particularly concerning to Shannon and me is that the hospital elected to give Nico three substances that are known to cause allergic responses back-to-back-to-back (asparaginase, one of the chemotherapy agents, which is known to cause allergic responses the more often it is taken; blood; and platelets). When we asked why we have blood and platelets infused earlier in the week before coming in for chemo and a procedure, we were told that this was not preferable because giving everything on the same day is “the most expedient course”. As a result, no one knows for certain exactly what caused Nico’s anaphylaxis. If it is the platelets, this will not be a big deal. If it is the asapraginase, this could have very serious consequences for Nico’s course of treatment and his responses to treatment. Personally, I prefer to proceed like the tortoise and know beyond a shadow of a doubt what is going on than “expediently” rush ahead like the hare and not watch where I am stepping. But what do I know, I am just a parent who should turn off my brain and do what I’m told.

We are just glad to be home at this point, but we dread the next choice we will have to make.