Nico made counts today and we will be admitted tomorrow morning for his next round of high dose Methotrexate. He does not need a lumbar puncture this time around, so that is a bonus.

It is a strange to feel “relieved” that your child is going to get pumped full of chemo, but delays are more stressful than chemo (at least for us). So, we feel some weight lifted off of our shoulders.

I try not to freak out in this journal, or at least I try to minimize it when I am freaking out, but a slow responding neutrophil count can suggest relapse. So even though we had a normal bone marrow aspiration just weeks prior, I felt the weight of the world on my shoulders the last few days. Luckily, I am on an ALL listserv (that I so frequently mention) and I can freak out on there. I did so, and I got some really great information and reassurance. First, several parents warned me that the antibiotic (Septra) that almost all the leukemia kids take twice a week can lower neutrophil counts. Some kids are especially sensitive to it, and these parents told me to “get him off that!” I emailed our oncologist, who has some reservations about switching to another antibiotic, but he was comfortable allowing me to skip this week’s dose. Well, lo and behold, Nico’s neutrophil count went from 400 to 1200 in three days. It might just be a coincidence, but maybe it’s not. Our oncologist suggested that we discuss the pros and cons in person. So I will update the conclusion later.

One woman, whose child, like Nico, also had delays and reductions in chemo, pinpointed exactly where my anxieties lay. She wrote: I know you know this intellectually, but just wanted you to hear that many children have been in the same position before -- when chemo must be reduced due to sensitivities -- and have maintained long term remissions. I was really grateful for the listserv, the other parents and the Internet! I cannot imagine what it would be like to go through this without communicating with other parents who have walked in these shoes.

With much gratitude,

Shannon

PS – Please keep us in your hearts and thoughts these next few days.

Nico’s neutrophil count has still not recovered since the first week of interim maintenance when he received high-dose Methotrexate. His highest count was Monday at 500, but 750 is required for his next round of chemotherapy. So we are just waiting now. It is extremely nerve wracking for a variety of reasons. First, delays/deviations in the course of treatment is less than ideal for obvious reasons. Although we remind ourselves that some delays are expected, from what we have gathered this delay is not typical. Second, the intensive phase of treatment is slated to last 6 months. We are already 5 months into treatment and we are not even halfway through. We had planned/hoped that Nico would be finished by his third birthday and return to his Montessori school at the beginning of the year. Those things do not seem likely anymore and that is disappointing. Again, we try to take it day by day, and not look too far ahead. Nico seems to be feeling great and we have taken advantage of this break to get outside and enjoy the great weather we are having. I will update again when we can start round two, which we hope is very soon.

Love,
Shannon

P.S. A grandma of two of Nico's school friends made him a Cat in the Hat quilt and matching pillow based on the post I wrote quoting Dr. Seuss. The quilt is really amazing with titles of other Seuss books actually sewn into the fabric. Nico loves it and actually carries the pillow around the house every morning. We continue to be amazed by people's generosity and concern.

So much has happened since my last post, it all seems like a long time ago. After a fairly uneventful round of IV methotrexate, we prepared for discharge from the hospital. Knowing that our favorite nurse was off on our last day caused some anxiety, but pending his morning blood work, Nico was cleared to go home. So why should we worry? I say it over and over, and I will say it again – nurses make all the difference. The last sixteen hours were unnecessarily miserable. The night shift nurse seemed knowledgeable and concerned, but she should never, ever work night shift. Night shift nurses need a specific skill set – an organizational ability that minimizes the time they spend in the room and the ability to be both quiet and work in the dark. This nurse lacked this skill set. For various reasons, she was constantly in the room, being loud, wearing a hat with a spotlight on top (like a miner, no joke), carrying a flashlight and of course waking Nico. Constantly waking Nico. Nico did not sleep a solid hour all night. He was very stable and needed almost no medication by that point, so I still have no idea why she was in the room. By 4:00 a.m., Nico started to get really aggravated, and while he was attempting to squirm away from this nurse and resume sleeping, he de-accessed himself (meaning that the needle in his port was pulled out (partially)). The nurse did not immediately notice, and Nico had blood all over his shirt and bed sheets by the time Jeff realized what happened. When anything goes wrong with the port, Jeff and I get very nervous because an infected port could be potentially life threatening. So the well-meaning, but loud and well-lit nurse had to take the old needle out and insert a new needle. First, you cannot just take the needle out of these ports and leave them. The ports have to be flushed and filled with blood thinner to prevent clotting. Second, Nico had blood work due at 6:00 a.m. (and we thought our pending discharged depended on it). So she inserts a second needle (and there was no time to prepare him with the usual numbing cream) into the same spot the previous needle sat for days (ouch). Nico handled this amazingly well. But this second needle insertion failed to draw blood. That was when the parade of nurses began, each trying to manipulate the port so that they can get blood out of it. Nico was screaming bloody murder by this point. The night nurses decided to leave the problem for the day shift.

This is when it got worse.

So the day shift decided that there might have been a small clot that formed on the end of the needle. The treatment for this is to inject a drug called TPA into the line. Because of my background, TPA makes me very nervous. I took care of more than a few patients that received TPA to treat a clot in the heart (heart attack) and ended up having a massive brain hemorrhage. Now at the time, I am assuming that the dose of TPA for a port is significantly smaller than for a heart attack, but I am still nervous. So the day shift nurse injects the TPA, and I am watching very closely, making sure it is less than 3 ccs (the amount his port holds). We wait hours for the TPA to work, and still no blood. By this point, the nurse practitioner has arrived and she tells us that we really do not even need the blood work for discharge anyway. But now they cannot send us home with a potentially nonfunctional port. So the decision is made that we must withdraw the second needle and poke him for a third time, without numbing cream, into the same spot.

The dayshift nurse comes into the room with another nurse and a whole lot of supplies. Both nurses are asking each other questions about how they are planning to proceed. It becomes clear that neither of these nurses have ever done what they are about to do. At one point one said, “I don’t know . . . maybe you should ask ___” At this point, I decided that my previous assumption about the safety of using TPA in the port was premature because these nurses were clearly inexperienced. They set up the sterile field and I stopped them and asked them to explain what they were planning to do. They planned on taking out the needle with TPA in it, sticking him with a new needle (that should in theory be able to draw blood), then flushing the TPA that was inside his port into his bloodstream and then adding a blood thinner and pulling out the third needle. I realize that I am not an easy mother-of-the-patient because most people would not get nervous about TPA (they would not even know what it is) and would not ask so many questions. But I am who I am, and I have to speak up for my child when I have any questions or concerns. So I ask them why they are not going to draw the TPA out before they flush. There was an exchange of looks between the nurses, both got irritated and the primary nurse seemed flustered by my questions. There was a back and forth and finally I tell them that they need to call the nurse practitioner because I am not comfortable and no one is going to do anything to Nico until I am satisfied that this is being carried out properly. The nurse practitioner came, she was very understanding, we spoke at length and finally I gave the go-ahead. But when Nico realized that he is going to be stuck again, he got hysterical. So hysterical that it took four people to hold him down. He cried. I cried. It was really terrible.

We were finally allowed to go home. There was a lot of tension between the nurse and myself and the discharge was incredibly weird, but that is another long story. When I got home I was uneasy. I did not even post that we were home. Nico did not seem right and the prospect of going back to the hospital for methotrexate three more times in six weeks caused me a lot of anguish. I called the charge nurse and requested that the nurse that we were so comfortable with in the beginning of the hospital stay be assigned as our primary nurse for our future hospital stays. The charge nurse said that patient requests were not a consideration because they assigned nurses based solely on patient acuity. I told her that was a real shame because the disparity in nurses on their unit was astounding. She replied, “I know” and then explained that many nurses could not handle this type of work and the unit had a high turnover rate and a lot of new graduates working. At least she was honest about what is obvious.

Within, sixteen hours Nico had a fever and was projectile vomiting. The next morning we were back in clinic. Nico was severely dehydrated. They gave him fluid until he peed and that took 5 hours and 4 IV bags (kid-sized). I told our oncologist about our experience the last day in the hospital. He immediately ordered blood cultures (to make sure Nico’s blood was not infected) and gave Nico antibiotics. He told us that Nico’s condition warranted hospitalization, but if I felt comfortable giving him IV fluid and IV anti-nausea drugs at home, he would let us take him home on the condition that if his fever reached 101.3 we had to bring him back. I would have done anything to safely avoid the hospital, but we were back by the next morning after Nico spiked another fever. We spent another four days in the hospital getting IV antibiotics, anti-nausea drugs every three hours around the clock, and IV fluids. Nico’s counts (blood work) crashed and he was again neutropenic. When Nico’s fever finally broke on Monday, we were cleared again to go home. By this time, Nico’s vomiting turned into watery diarrhea and while I spoke to Nico’s oncology team and he leaned over his iPad, diarrhea leaked out the front of his diaper and saturated the dressing around his accessed port! Nico had to be de-accessed, cleaned, and re-accessed for a fourth time.

We still returned home on Monday, but I continued to give Nico IV fluids at night and IV antibiotics every six hours. Miserable. Neither Nico nor I slept much for the past several days and it really wore both of us out. Of course, Nico is also recovering from being injected with an incredibly toxic substance and sick, so my exhaustion is comparatively trivial. We were able to stop the antibiotics yesterday, and I am hoping that we both sleep tonight.

Nico will have another blood draw on Sunday, and if he has recovered, we go through the methotrexate all over again starting Monday. There is a mixture of pure dread and desperation to get through this phase as quickly as possible. Our oncologists are not convinced that the drop in Nico’s counts is from the chemo, but think it is entirely possible he caught a virus that suppressed his immune system on top of everything else. This possibility makes Jeff and I even more nervous about exposing Nico to other people because this event has resulted in holding a type of chemo that Nico was supposed to be receiving for the last two weeks (it is too dangerous to give it when his counts are this low).

So there it is. Even though we spent Mother's Day in the hospital, I would not say that Mother’s Day completely stunk this year. In fact it was a celebratory, fantastic, joyous Mother’s Day because we got the results of Nico’s bone marrow biopsy and his marrow looks completely normal. Now we just have to make sure it stays that way.

Nico “made counts” on Sunday, which means that his neutrophils and platelets were high enough to safely administer more chemo. The interim maintenance phase seems fairly intense so far. On Monday, Nico had a lumbar puncture with more chemo injected into his cerebrospinal fluid, a bone marrow aspiration (to see how things are going in there), Vincristine IV (the drug that makes it difficult for him to walk and causes him a lot of jaw and leg pain), and high dose Methotrexate IV. The Methotrexate is why we will stay in the hospital for several days, and is another result of being high-risk. First they had to alkalinize Nico’s urine by giving him bicarbonate through his port until some cotton balls we stuck in his diaper hit the right pH (a very sophisticated technique – wringing out pee-soaked cotton balls). Then they started the Methotrexate and that ran over 24 hours. The Methotrexate is nasty. It is excreted in urine so we cannot even change his diapers without special gloves. Nico’s diapers have to be changed every two hours around the clock to monitor both the pH of the urine (it is vital to protect his kidneys) and to make sure the Methotrexate does not remain on his skin long enough to damage it. We will have to stay here until all of the Methotrexate clears his body and that can take several days (all the while still doing this every two hour diaper exercise). Sounds like fun, huh?

The start of IM marks the start of the treatment clock. “They” always say that treatment for ALL in boys is three years, but those three years do not start until the beginning of IM. So this is a milestone of sorts.

There have been a lot of ups and downs over the last three days. Things just do not go smoothly when you are injecting a two-year old with poison. We had a scare last night just as the Methotrexate finished. Nico started coughing pretty violently and then seemed to pass-out. I got a bit frantic, but he is fine this morning and acting like his usual hilarious self. We just take it hour by hour and jump the hurdles as they come. It has been more difficult for me this time around because Jeff must work and I am mostly on my own (this is very difficult for Jeff, too). Thankfully, we have had a great nurse for the last three days. We all seem to be on the same page. She has almost 30 years of experience as a nurse, and she still cares about her patients! This is rare I think, and I am so grateful for her. I asked our oncology team if there was any way to “assign” her to Nico so that she is forced to take care of us at every hospitalization even if she would rather not. J I was told that she is specially trained and has to be assigned to the sicker kids when they come in, so we might not get so lucky again. We will see about that!  At this point, I am completely comfortable forcing someone into indentured servitude via whining and complaining since nurses are not created equally. And by the way, when I told her the caliber of nurses varied greatly, she responded, “Tell me about it! I have to work with them!” Love her.

Anyway, Nico’s neutrophils are almost normal right now, so we get to play in the playroom. Yippee! This is a lot fun for Nico, and I am overjoyed to see my baby boy playing. I cannot really say that he is playing with other kids as much as bullying them, taking their toys and claiming the entire gym as his kingdom. Yes, he is two-years old, but it is clear that he has not been around kids for a while. Luckily, my little angel did not permanently damage any of the other children, but there are probably a few kids that won’t remember “Kid Zone” as fondly because of him. Meh.

As always, thank you for your love and support. We have failed to individually thank people the way we want to, and it is not because we are not appreciative, it is just that we are totally rude (and maybe just a tad overwhelmed too). But we feel your caring concern and it sustains us - loving you back!

Nico finished the second phase of treatment (consolidation) and was set to start the next (interim maintenance), but again his neutrophil count was too low and we are delayed another week. The last twelve weeks of chemotherapy have actually taken us almost eighteen weeks because of these delays. I know that I have said it before, but even though I am glad that Nico gets a break from all these poisons, the longer it takes to get through the intense phase, the longer before he can rejoin society and start living his own little life again.

Since we are not getting chemotherapy this week, I thought it might be a good time to give the back-story to Nico’s diagnosis.

Jeff was laid-off from his job about two weeks before Christmas. We lost our benefits (including health care coverage) on December 31. This was stressful, but Jeff actually had another job offer on the table, and all three of us were set to travel to Bermuda on January 3rd, to look at real estate and accept what was a very lucrative job opportunity for Jeff. On January 2nd, I noticed Nico was running a fever and took him to the pediatrician because I was worried that it was his ears and the flight would prove painful. That was the day Nico was diagnosed with leukemia.

Jeff did receive a severance and we enrolled in COBRA for almost $1800/month. We clearly were not able to make the trip to Bermuda, but the company still extended the offer knowing our circumstances. Unfortunately for the next 3+ years, Nico cannot be more than one hour from a children’s hospital and Bermuda does not have either a children’s hospital or even a pediatric oncologist. Jeff turned the job down.

We have been living on Jeff’s severance and our savings for almost 4 ½ months. This has been difficult financially, but honestly, in some ways the timing was ideal because both Jeff and I have been there with Nico through all of his treatment thus far.

Life has a way of working things out, and reminding us that we have very little control over anything. As the weeks of unemployment turned into months, Jeff and I decided that it would be smarter to move into my mother’s house in Arizona to extend the life of our savings. We gave notice to our landlord, and literally two weeks before we were set to move two things happened back to back. Jeff got a job offer here in Salt Lake City and my mother called to inform us that while making home improvements in anticipation of our arrival, her roofer discovered that she had a serious mold problem. Fungal infections are incredibly dangerous to anyone with a suppressed immune system, so clearly Arizona was off the table.

We had two weeks to find a new place since our old house was already rented out. In addition to the time crunch, Jeff was starting a new job and Nico was getting the Erwinia injections every Monday, Wednesday and Friday. It got stressful. We found a gorgeous condo (no yard work – yay!) that was over our budget, but we decided that we needed to do something for ourselves even if that was not the financially responsible decision. So Jeff cashed out some of his retirement so that we did not have to stress about where we were going to be living anymore.

We will officially be insured again very soon and get to wave bye-bye to the $1800 COBRA payment, so that will help too. We are actually very grateful that COBRA was an option because Nico’s medical bills over the last four months exceed two hundred and fifty thousand dollars.  

Synopsis – lost job, lost benefits, child is diagnosed with leukemia (all in 2 weeks). It looks like we jumped the first two hurdles though and we are running full force at number three and ready to take flight.

This road is hard. And even though I knew in theory that Jeff’s job loss and the huge expenditure of money were adding to my stress, all I can ever really worry about now is my son’s life. We would gladly hand over everything we own and put down our own lives for that little boy. He is what matters most. 

So for now, back to unpacking . . .

PS – If you only read the updates on Caring Bridge, you might want to check out the post from yesterday on WarriorNico.com. I posted some pictures from Nico’s school that are too cute for words.