Admission: May 6

• 12:45 pm
Let the boy eat! Our team feels they've come to the most reasonable explanation for Jaxon's recent issues. Though no kidney stone was seen, his symptoms match up to there being one. He may have passed it already, or it is not large enough to have caused pain or blockage. His lower than expected coagulation factor is likely a delayed side effect of the Pegaspargase he received on Day 4. It is known to cause irritation to other organs. So we have seen two separate issues that have inter-mingling symptoms. The dehydration is to be expected, considering these other issues. He's feeling much more chipper today, and was quick to give me his food order ... water, then a PBJ sandwich, then pizza. Doc says no to that so he's starting off with some apple juice, water and yogurt. In about half an hour we'll try some digestive cookies. The bowel issue is likely because his body saw other things happening that took all the attention away from the gut. Now that we have a good idea of what else has been happening, the hope is that the gut issues will resolve as well. He will still be going for a repeat X-ray to check for changes to the irritated portion of his bowel. We are hopeful that things continue to improve so that we can still go ahead with his final clinic procedures on Thursday of this week.

• 2:05 pm
Paul saw our Top Doc (his name is Dr. David Dix, but we call him Lord Business) in the hallway downstairs. He's not convinced it's a stone, but will be in touch with us in the next day or so. Will keep you posted. When I told one of the Oncology Residents that Dix wasn't so sure about the kidney stone, she grinned and said she was looking forward to debating him on that conclusion. I think he'll be stopping by to see us tomorrow.

Dr. Dix' Nurse Clinician, Karen, came by our room this afternoon and we had a good little chat. I love how very personal this Oncology team is. We talked about Jax and the changes coming to the hospital and RMH, and even her retirement. I hope it won't be in the next 3 years! Both Karen and Dr. Dix assured us (separately) that this will likely be just a blip on Jaxon's road to recovery. Some kids sail right through this phase with no complications, some kids need a bit (or a lot) of extra TLC.

• 10:00 pm
Consensus from our medical team is that Jax is likely passing (or has already passed) some crystals (itty bitty kidney stones). A follow-up ultrasound today (first one taken Sunday evening) shows a portion of his large intestine is still irritated, but that there is no blockage. Time and a few gentle laxatives are expected to resolve the buildup of gas and other stuff that is found in large intestines. Nurses can hear movement in his belly. It is not at all unusual for a child's gut to get lazy and take a holiday when the body is dealing with all the other things that come along with chemotherapy. He has been experiencing some uncomfortable gas pains as we wait for things to get moving.

We are hoping to get him up on his feet tomorrow. He's been resting a whole lot this past few week with very little walking. The chemo also causes joint pain, so he is feeling the effects of that in his hips and isn't confident in his strength to walk, even with assistance. We hope to have a visit from the physio team tomorrow for some ideas and encouragement to get him more mobile. Obviously, walking and moving will help with the bowel issues.

Blood and urine culture lab results show no sign of infection.

His blood counts and electrolytes are at satisfactory levels.

Admission: May 4-5

After we caught our breath from the scary time in the ER, we were admitted to the Oncology ward. One of our nurses from our first admission came to the ER to take us upstairs. It was a long tiring night with hardly any sleep. Jax was monitored very closely, vitals taken every hour. He was hooked onto a machine to monitor his heart rate, saturation, and respirations. His respiration levels dropped frequently, which was concerning because it meant he was not breathing deeply. Our clever nurse, Gino (The Filipino) figured out that it was because Jax had to pee that he was taking shallow breaths. Once he agreed to try peeing, his respirations improved. All night, Gino came in every hour (or more frequently) to check his vitals, including neurological tests. I don't remember what the reason for the neuro tests was (checking pupil dilation, following basic instructions, answering basic questions) ... something about his kidneys or pancreas or liver being in a bit of a shock, which can lead to seizures and other issues in the brain.


Here's the update I posted on FB tonight ...

We've had a quiet day, but also a bit of excitement. Our Drs. are a bit puzzled by how Jax is feeling (very sleepy), and what the numbers on his blood work say is going on inside. Ultrasound and x-rays show some irritation to a portion of his bowel, one kidney and ureter. They are not sure if these were caused by his severe dehydration, or if there is something underlying that caused those irritations, which started the trend toward dehydration. If he has an underlying infection, his gut could have "gone on strike" to allow the body to focus on the greater issue. All his other major organs look well and are doing what they should. There is the possibility of a urinary tract infection (already being treated with antibiotics as a precaution) or a kidney stone. A stone was not seen on the u/s, but could still be there. We are in a bit of a "wait-and-see" situation. We expect to have lab results tomorrow from blood and urine cultures that were taken this time last night. Our Dr. is curious (maybe a bit cautious, not yet fully concerned) about what might be causing declines in certain parts of his blood and electrolyte levels. He is being watched carefully. After a tense day, we are looking forward to a restful night sleep and hopefully more clarity tomorrow as to what is going on. He is still not allowed any food or drink but is handling that remarkably well. He was allowed some ice chips with his evening meds. The IV fluids help to keep his thirst quenched. Dr assured us that he is in a much better condition today that what he was in when we brought him here yesterday.

He is sleeping soundly now. I had been snuggling with him so he could play with my hair but I got up to get a few things settled. In the time I was up, he took over my pillow that I left on his bed. He looks pretty darn cozy. 

ER - May 4th

8:14 pm (Paul)
Pray for Jax. Back in hospital tonight. Looked like dehydration, and may only be that. However, there are a number of signs of a number of things which could lead to other more serious complications (possible surgeries, but likely not). We will update when we know more ... please continue to pray.

9:10 pm (Rachel)
Jax has stabilized and blood work shows he is responding well to fluids. He will be admitted for at least 48 hours for close observation to ensure the improvement continues. Dehydration sets off a host of other complications, considering his disease and the course of treatment. Some major concerns have been eliminated, some are still being watched. Also waiting a few days for blood culture for any signs of infection. This was a scary evening as it was our first "hiccup" but we are breathing easier now.

10:35 pm (Paul)
Jaxon's levels are getting better with the IV liquids and meds. The Dr's are still not exactly sure, but it looks like dehydration was likely the cause. Jax and Rach will be in hospital for at least 48 hrs which will be enough time to get all his results back to make sure there isn't anything more serious. 

Pretty funny story: The Dr's wanted a urine sample so we asked Jax if he could pee for us. Head shake, no. I told him a very gentle version of what a catheter was and he agreed to try peeing on his own. The nurse got a little cup ... we asked for something bigger. She wasn't too concerned. Three cups later ... we had warned her.

Jaxon's very low sodium levels have crept back up satisfactorily. His hemoglobins have reduced as they were concentrated because of low hydration, so that's good. The ECG was good and the neurological test seems good as well. Pancreas isn't totally off the list, but likely won't be an issue. 

So, you can see that a little water (well, the recommended consumption anyways) can go a long way! We have not been forcing him to drink, but strongly encouraging it. Because of his lethargic response and complaining of nausea we haven't felt it necessary to push it and then have him throw it up, and make him more dehydrated. So, we're all learning what the right balance needs to be in all this. Seems like being proactive rather than reactive is the key here.

Please pray for wisdom and insight for Rach and I as our new normal doesn't seem to be consistently normal at all right now. Looking forward to 6-7 months down the road when the norm should be fairly consistent. We appreciate your patience as we attempt to relay correct information which seems to change regularly for us at this stage in the game.