LTM Cycle #1 nearly done!

We are nearing the end of the first 85-day cycle of Long Term Maintenance. Only about 10 more of those to go. 10 more sets of 85 days. No biggie, right?

LTM Cycle 2, Day 1 will be Wednesday March 4. It will begin with an LP (lumbar puncture, aka spinal tap) to check his spinal fluid for cancer cells and to inject chemo into his spine, to kill any cells that dare show their ugly faces. He'll also get his regular monthly IV chemo (1.2 mg of Vincristine) and that evening will start the infamous steroid week. Again. More on that later.

As we began LTM, we were warned that it might take a few weeks/months/cycles to get the dosage for his at-home meds sorted out. Some kids tolerate 100% of the recommended dose. Some kids get bumped down to 3/4, 1/2, 1/4 ... I've heard of one patient who is at 12% of the protocol dose, because that's how much the child's system can handle and still keep blood counts within the magical window that makes oncologists happy. (ANC between 0.75 - 1.5.) If the ANC is too low, the kiddo is getting too much daily/weekly chemo. If ANC is too high, the kiddo needs more daily/weekly chemo to suppress the marrow enough to actively seek and destroy any remaining (or returning) leukemic cells. Jaxon's counts were great for the first check-up of this cycle. On the second check-up, his ANC had dropped to 0.64. Not yet low enough to adjust his daily/weekly chemo dosage, but low enough to watch closely for a few weeks. That day (Feb 4) he began his monthly 5-day stint of steroids (Dex). Dex is known to artificially (but still effectively) elevate the ANC, and the rest of the blood counts as well. The 0.64 result could have meant that he was brewing a virus like a cold, or could have meant that his body decided that the 100% dose of the daily/weekly chemo was too much. The plan was to check counts again in one week and see where they were at. The expectation was that they should be significantly elevated, as usually happens during Dex week. If they were still low, then something suspicious might be going on. I took him for counts on Feb. 10 and indeed, his ANC jumped quite a bit to 2.03. He also started getting a bit sniffly/sneezy/coughy that day - indicative that he indeed had been brewing a virus but the Dex had suppressed the symptoms. Oncologist was happy that ANC did rise with Dex, but still wanted to see where it would settle at after Dex had worn off. Today we went for yet another arm poke and results showed that his ANC is at exactly 0.75. Onc is happy with that, and we won't need to check next week. Two weeks from now will be regularly scheduled check-up (LP + IV Chemo).

If his ANC had still been low, we would have stopped all the at-home daily/weekly chemo until ... I don't know when. It's called a "chemo hold". Because of the clinical trial that he is on, once his ANC reached the minimum level, he would have been started back at a reduced dose of the protocol standard, and then watched to see how his body was tolerating it. For many kids, this up and down takes a long time and lots of bloodwork to get sorted out. The monthly IV chemo and the 5-days-a-month-steroid would continue, no matter what his counts are doing.

There's also something peculiar going on with his kidneys. Way back in May at the end of Induction, there was suspicion of a kidney stone as he had some crystals in his urine and some intense lower back pain. X-rays and ultrasounds showed happy kidneys and urinary system so we left it at that. He had one or two nights of intense lower back pain in August/September, but that could have been from the craziness of all the meds he had during DI at that time. In November and December he had a few pink pees (one with blood streaks), indicating that he may be passing a kidney stone. Pee samples were taken and he showed some indicators of possible kidney stones, but nothing definitive. ONC wanted to have another ultrasound to see if any stones might be visible. January 28 he had an u/s and it did show a 3mm stone. In-depth kidney analysis (via blood sample) showed some low numbers for something that I forget what it's called. It seemed "odd" to the ONC, but not concerning, but worthy of follow-up. She has been in touch with the nephrology department at BCCH to see what to do about the oddity. Special urine sample was sent to BCCH on Feb 4 but we learned yesterday that the sample was of insufficient volume, so it will be redone at our appointment in two weeks. Until then, we work very hard to make sure he gets a minimum 1600 mls of fluids each and every day. Our Onc and the nephrology folks at BCCH would like to find out what is causing him to retain excess calcium and create stones. He could be developing stones that usually dissolve, but this one got a bit bigger. The plan to deal with the stones would be to adjust his diet and continue pushing lots of fluids to help his kidneys flush properly. His symptoms are very sporadic so it's not an alarming or urgent matter, but not one that should be ignored.

Other than all of that business ... he seems the picture of health.  He's full of energy, constantly on the move, making us laugh and charming all the ladies. He seems to be over the virus that popped up last week, ending it off with a two hour nap on Sunday morning. He woke up around 8:30, took his meds, and headed right back to bed with a headache. Of course that sent my head spinning for whatever could be causing him discomfort, but he woke up happy and hungry as ever. I spent extra time taking his temp and frequently touching his forehead, watching for signs of fever. Thankfully, none!

The effects of the Dex are a funny thing. (Long-term side effects of Dex are not funny at all, but we'll deal with those if and when they come.) While on Dex and for several days to a week following, he has very little control over his temper. 'Roid Rage' really is a thing, this I know for sure! His hunger becomes insatiable. He wants something all the time. He either knows exactly what he wants and who shall prepare it and how it shall be served and who is allowed in the room while he eats it and who is allowed to watch him eat it ... or he has no idea what he wants. For him the not knowing what to eat is agonizing! For me, I'm not sure which is more tiring - the constant short-order cooking to keep up with his cravings or trying to come up with something, anything that might possibly, even remotely appeal to him. While the temper and hunger are most intense for about 10 days of the month, I notice that he also struggles with anger while not "under the influence". It becomes a learned behaviour that we need to curb when we know that the Dex is not immediately to blame. The hunger thing ... I dunno. He's super hungry on Dex, and just regular-old-really-hungry the other 20 days of the month.

Watching traffic with brother and friend.

* melt * 

Ice skating lessons with brother Marty!
He's also signed up for T-ball, to start in April.

He counted them ... at least 28, I think. 

Playdough pizza. Play imitates life. So hungry, all the time!

ER & Admitted - May 20

8:30 am
Back in hospital. :( Hopefully just a very short stay. Jax had some lower back pain last night and was very restless. 2 doses of morphine didn't help him settle so we came to ER. Strong suspicion is that it's from a kidney stone. Awaiting a time for kidney ultrasound, which was already on the agenda for our clinic visit today. His pain is on the same side as the suspected stone two weeks ago, though it was not seen on u/s. He's been sleeping since 1am and has not had any more pain. Still REALLY hoping to go home today, but not until this is sorted out. It's Marty's birthday tomorrow so there is added urgency to get home!

8:45 am

Ultrasound at 10:00. Now the challenge will be getting him to drink 4 cups of water/juice, and hold it in! Oy.

5:40 pm

Good news ... and disappointment. 

U/S showed happy and healthy kidneys. Not sure the cause of last night's pain but if kidneys are clear, docs aren't too concerned. We are well stocked with morphine. 

The disappointment is that his procedure for Thursday was not booked for Victoria (admin glitch), so we need to stay in Van until then. We are out of hospital and staying another 2 nights at Easter Seals. I thought about going home for Marty's birthday tomorrow and having Paul come here, but it's too much hassle. Marty will more easily get over my absence than Jax will.

Clinic appointment on Thursday morning at 9 at BCCH and then there should be NO reason why we can't go home. Lesson learned on the unpredictability of dealing with a critically ill child.

REMISSION!

It was right around suppertime, exactly 4 weeks ago, that we were given the news that Jaxon has ALL. 

Around suppertime today, we were told that Jaxon has achieved complete remission!

My facebook post:
Complete. Remission. Achieved!

From Paul:
Bone Marrow results are back ... Zero. Negative. None. Gone. Bye-bye.
In other words, no traces of Leukemia present and we are onto phase two of the process. Can I get an AMEN People!!!

We still have a very long road ahead. The battle has really just begun. The treatment over these past four weeks, the Induction phase, has done as it was designed and expected to do - to eradicate the Leukemia from his cells. We will soon begin the next phase, called Consolidation. We will learn more about it from our Oncology team over the next few days. 

Other really big news of the day is that Jax finally got out some air and other stuff that has been trapped in his lazy gut. Docs have been watching his abdomen closely, as it has been causing him great discomfort and has often looked distended. He went for a third x-ray of his belly today. The scan showed that he had a considerable amount of air, and though it wasn't clearly seen on the scan, it is believed that he has some impacted stool. I'll spare you the details. We know that his bowels are working at a basic level, but he won't be discharged until his poops normalize and the cramping/bloating subsides. He's had some pain again when he pees. They are still working on the theory that there has been some injury to his kidneys. A combination of the dehydration and a suspected stone or crystals. Both the pee and poop issues are expected to resolve on their own. After the results of the x-ray came back late this afternoon, there was talk of him getting an NG tube to alleviate the pressure on his gut. He must have gathered all the details he needed to know about that as shortly after he spent a long and very successful time upon the throne. Who can tell me why all the toilets in this children's hospital are built for adults? So tall and imposing. Horseshoe shaped seat. My boy's little bum and chicken legs just don't do well on such a monstrosity. PZ went and bought a cheap training potty. It sits on the floor beside his bed so we don't have to get him, two supporting adults, and his IV pole into the tiny bathroom with the giant toilet. In the training potty, he can have his feet on the floor and sit comfortably. There was added complexity this evening when docs ordered a urine analysis (to be caught midstream, thank you very much) and a stool sample. They must not be mixed. We rigged up a system on the big toilet, with the removable seat from the training potty.  The nurse was very impressed, and our efforts were "rewarded". He has been returned to NPO (no food or drink by mouth) status, though if he's really hungry or really thirsty, he can have some clear fluids. This is to ensure that the gut continues to awaken and work its magic.

Our sweet nurse Marina just came in to give me the results of the Electrolyte and Metabolite portion of his blood work from this evening. Everything is as it should be, no "flags" to show that any of the levels are out of the normal range. He could still be passing crystals or sediment, but the numbers show that his kidneys are functioning perfectly. 

I don't really want to end this post talking about bodily fluids ...

The cancer is gone. Now, let's keep it that way.

Thank you, Loving Heavenly Father. Our helper, our healer, our hope.

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.