And We're Home!

We had a pleasant surprise today.  J finished his last IV dose of chemotherapy this morning.  By the treatment protocol he is on he needs another dose of chemotherapy through a lumbar puncture tomorrow, but they do those under sedation and getting sedation on a weekend for a non-emergent case is not going to happen.  He's scheduled for Monday.  Rather than make us wait two days in the hospital for this treatment, they sent us home today.

The Lord's Hand Making Our Burdens Light

There have been a lot of little things that have happened over the last month that have made this a little more bearable.  Some may see these are mere coincidence, but I see these as tender mercies of the Lord and evidence that He is a part of our lives.  There is a story in the Book of Mormon of a people who were being denied their religious rights, and threatened with their lives if they were caught praying vocally.  This is part of their story (Mosiah 24:14-15):

And I will also ease the burdens which are put upon your shoulders, that even you cannot feel them upon your backs, even while you are in bondage; and this will I do that ye may stand as witnesses for me hereafter, and that ye may know of a surety that I, the Lord God, do visit my people in their afflictions.And now it came to pass that the burdens which were laid upon Alma and his brethren were made light; yea, the Lord did strengthen them that they could bear up their burdens with ease, and they did submit cheerfully and with patience to all the will of the Lord.

 Here are a few of the things that happened that have helped prevent a bad event from being worse, in no particular order:

Chemotherapy

J returned to the hospital Tuesday to begin his first round of chemotherapy.  Mom has been worried about how he will handle this and thought we would both need to be present with him.  Without trying to start a fight, I thought, "Why would we want to do that"?  It turned out that neither of us got what we wanted, because I came down with the flu.  One other child tested positive for influenza, two others were sick, and we all managed to keep the makers of Tamiflu in business all by ourselves.  Mom is the only one allowed to see J in the hospital.

Follow-up MRI

We repeated the MRI.  J complained about having to be in that noisy machine.  "I hate MRI's!!!".  Remember the steroids?  Oh, and adding the need to access his port right before this. He was not happy about this.

MediPorts

One of the nice things they do is place a medication port inside the body.  It has a little reservoir that can be punctured by a needle, just underneath the skin in the upper chest.  This is what the reservoir looks like with a needle in it.  Obviously not under the skin:).

2nd Time Home

We were allowed to take J home for the weekend.  This decision is where medicine takes on some of the personal biases of the doctors.  We have three pediatric oncologists.  Last week they rotated the inpatient coverage on a daily basis, which doesn't impact the main treatment plan, but can lead to a little inconsistency on the minor details.

Steroids

The lumbar puncture was the first part of treatment.  Later that day he received all of his chemotherapy.  Two doses of something that took 15 minutes each to deliver (really anticlimactic if you ask me).  The remainder of the week was steroids in the form of prednisone.  Here is a list of prednisone's side effects (conveniently available on the internet):

Lumbar Punctures

Tuesday, the seventh day after discovering the mass, we returned to the hospital to be admitted and initiate treatment.  The first part of the treatment was an intrathecal injection.  Intrathecal refers to being in the CSF space surrounding the brain and spinal cord (similar to epidural, but a little deeper).  Lymphoma can make it's way into this space, but the chemotherapy given intravenously can't cross well into this space.  Over the course of treatment, J will get poked in the back about 9 times to inject medication.  

The Results And First Time Home

The surgery was Friday the 13th.  Before surgery, J and his little brother had met on the bottom floor of the hospital since there are visitation restrictions on young children due to RSV.  They both repeatedly ran under this tall ladder.  Over and over.  OK, I'm not superstitious, but I thought it was a bit funny.

The Biopsy: Dad's Perspective

I hate waiting.  J inherited the fidgets from me, I am certain.  When I'm being a doctor, I love efficiency.  Wednesday night, after chatting on the phone with the pediatric oncologist (not her usual way of dealing with new patients, but as of this point everything we knew was from my domain of medicine, I had more to tell her than she had to tell me), we had a nice plan in place.  J would not eat after midnight.  The surgeons would meet us the next morning. They would let us know they have a slot for surgery that afternoon, and we would have preliminary results by Thursday evening.  We would then go home that night, because it was a simple surgical procedure that could be done as same-day surgery.  That was the plan.

The Discovery: From Dad's Perspective

For a couple months J was having pain low in his belly.  Previously we had him seen by his doctor and determined the pain was from constipation.  He somewhat faithfully followed a prescribed course of Miralax and his symptoms improved.  Recently the pain started again and he confessed he no longer followed his Miralax regimen religiously.  We chided him and threatened him and told him he needed to improve his compliance if he ever wanted to feel better, because that's what good parents do:).  Wednesday Feb, 11 in the afternoon, he had a new pain low in the left side of his back.  I was at work an hour away and Mom called to let me know he was in great pain, and couldn't even bend over.  Weird.  Maybe a kidney stone? We decided to get him to the pediatric clinic. I headed to pick up the girls from their string lessons and met up Mom and J at the clinic.  The drive home I had a recurring thought about these strange symptoms, "What if this is cancer" and would quickly dismiss it as silly, paranoid parental worrying.