Side Effect Struggles

The past few days have been pretty tough on Lexi, as she hasn't been able to shake her high fevers. She spent all day at the hospital on Thursday, but then was discharged when everything they tested for came back negative. Then she was back north of 103 degrees on Friday, so back to the hospital she went, coming home again after several hours. Then on Saturday, she spiked another high fever in the middle of the night, woke up feeling well to give us hope the fever broke, only to go back above 102 degrees again mid-afternoon. Initially they told us to simply watch it for a few hours, given all tests were negative 48 hours previously. But a 102.6 reading shortly before bedtime prompted a second call, at which point they said to bring her to the ER and admit her. So she's at Children's Hospital tonight. Under other circumstances, this temperature volatility would be frustrating, but with a Leukemia patient, it's downright scary. To be honest, we even find ourselves going back and forth each day on whether we hope they send her home or admit her!

Not that we needed more evidence, but the past 3-4 days has been another reminder that the effectiveness of treatment against Leukemia is just the very beginning of the story with cancer battles. Other than the initial few days diagnosing her type of cancer, and a few days last week where marrow biopsies were taken and Leukemia cell counts were studied a month into treatment, we have been consumed by identifying and mitigating side effects from chemo far more than thinking about the cancer itself. Her fevers are a perfect example, as her supressed immunity system simply doesn't have the firepower to fend off even the common cold, so she is paying for that right now.

Yes, the side effects include hair loss and plenty of issues with bodily functions as is the stereotype (and also is the reason parents of newborn babies are sleeping twice as much as we are these days). But there are plenty of other issues as well, which are both very concerning (they usually are temporary, but sometimes permanent) and very upsetting (watching a 6 year-old endure some of the things she has gone through is difficult regardless of permanency). 

We've already written about her high blood pressure, as well as her crazy high glucose levels (sometimes approaching 500, when 80-120 is the norm), which has made us experts on the diabetic routine. We've also seen a pitch change in her voice, and the ability to make several consonant sounds at the end of the words be robbed from her, given vocal chord paralytic side effects of her chemo protocol. That would be hard under any circumstances, but seems even more difficult to swallow after a long (and largely successful) crusade to give speech to a girl who didn't really talk as recently as her 5th birthday.  

There have been some more obvious physical side effects as well. Her body shape has changed, potentially due to her high school football player caloric intake during her time on Dex, but also due to water retention and things being a little off kilter in general. Her skin, and particularly her legs, look like spiderman due to circulation problems. And since towards the end of the induction phase, she also has had difficulty climbing or doing stairs due to issues with her legs. Fortunately, the current thinking is her issue is myopathy (muscular) instead of neuropathy (neuro),  as the former theoretically is more quickly and easily reversible after treatment. But we still cannot put into words how difficult it is to watch your 6 year-old scale a flight of stairs like a 90 year-old man (or beg to be carried up them instead).

We're still high on how things have gone so far, and optimistic about the future, especially given Lexi's amazing attitude (and smiles) through 99% of it. Just a tough few days and another glimpse that there is nothing easy about this disease, regardless of the eventual outcome.

Climbing

We had two incidents of climbing today...neither of which we were happy about. The day started with Alexis spiking her first temperature. Anytime it hits 101, we have to call the doctors. After the call, they wanted us to bring her in to look at. This ended up with us being at the hospital all day with them running tests, giving her fluid, and ultimately giving her a blood transfusion. They determined she has a common cold (the only thing to come back positive). We were glad when we were already there for her high 103.9 temp to hit. They couldn't find anything else to come back positive, so went ahead and sent us home. Our only highlight was Alexis's teacher coming to the hospital to work on language skills. Now, we get to watch for climbing temp throughout the night...needless to say, we won't be getting sleep tonight.

Our other climber today was Gavin. At nap time, Brian (who was home with the two boys while Laura was at the hospital) heard a huge crash. He ran upstairs to see what had fallen, and Gavin greeted him at the door. He had successfully climbed out of his crib. So, that earned him the front of the crib coming off and sleeping in a big boy bed. We weren't quite ready to have to deal with that right now, but we are even less ready to deal with an injury that could land another child in the hospital, so we will train him to sleep in a bed. Again, we won't be sleeping much tonight.

Humpty and Bummer

At Conner's preschool today, they were learning about Humpty Dumpty. They talked about how all the king's horsemen couldn't put Humpty back together again. The teacher said Conner quickly responded, "But the doctors can put him back together." Guess we are getting different lessons in our house these days.

Other learning in the house right now is being done by Gavin. He is really exploding with his language. He not only is starting to combine two word combos like "Big Truck" and "I do", but he is also becoming a parrot and copying language all around him. Most of it is good, but there are a few things he is picking up that might not be so great. Alexis's teacher at the Moog says, "Oh Bummer," which Alexis picked up and now Gavin says. He is so cute when he says it, so it makes us laugh, and he says it more. On the other hand, Mimi always says, "Oh Shoot," which seems innocent until an almost two year old says it. We'll have to work on encouraging the cute, innocent ones and trying to limit the others! He is also really into reading to himself these days...I guess a little sign that Mom and Dad don't have quite the time these days they used to, so he has to fend for himself!

Treatment Tuesday

Tuesdays have pretty quickly become Alexis's treatment days. Today, we headed to Children's just like any other Tuesday. This started the second phase of treatment titled "Consolidation." This is another 28 day cycle where there are planned therapies. Today she got Vincristine again, which is the ALL chemo choice since it is so effective against the leukemia, and also what we believe is the culprit for Alexis's voice change. She has gained a hoarseness and also lost the ability to create some sounds like "s" and "t". Although we had made so much gain in speech, we are accepting this set back to progress her treatment. For now, we will focus more on language and give speech a little more break. The good news is that this is the only Vincristine for this cycle, so maybe we will see some improvement in the paralysis of the vocal cords.

She also got put under again today and received chemo in her spine to keep that a hostile environment from any leukemia that thinks it wants to get in there. She did great with that portion and always wakes up so chipper (and a little hungry!). It amazes us how quickly she bounces back from that procedure. She will get this same procedure the next two Tuesdays. Sad how quickly your child getting put under becomes a norm and not as scary with each time!

We also started a third chemo today that is given by us orally at home. She gets it at bedtime and will continue to take that daily for the 28 day cycle. This is the same medication that after the year of different intense chemo will be a staple for that second year of maintenance chemo. 

Probably the biggest thing for mom to get through today is her fear of clowns, not Alexis's issues. For whatever reason, I have always hated clowns. There are two "doc clowns" at the hospital that entertain the kids and joke around with them to keep things light. The kids seem to like them. Even I know they are nice people and totally well-intended, they still creep me out a little bit!

Reactions

When you are faced with big news, people tend to have different reactions. The doctor was probably surprised when she told me the good news that there actually wasn't leukemia cells and I immediately started choking. She kept saying, "mom? Mom? This is good news." Little did she know that I had actually sucked a bug in when I took a big deep breath at hearing the news. She later said it was one of the more interesting reactions she has encountered. 

We also encountered a surprising reaction from Conner when we told him the good news. We had explained to him a day or two previously about how he was going to go in to get his blood taken to see if he could help Lexi with a potential bone marrow match. When the news turned around, we told Conner he didn't have to go and get tested anymore since the medicine was working. Much to our surprise after everyone being unanimously elated by the news, Conner was disappointed and devastated. He responded by sobbing and saying, "I wanted to help Lexi." We explained then how he could help her in other ways by holding her hand when she took medicine or giving her a hug when she was sad. Then he said, "but I wanted to give my blood too." Love his heart, but he's a little strange too!