25 May, 2011

Update

Robert has been fairing well this week. He has been getting sick a few times a day, but it doesn't get him down. He was able to attend his kindergarten "graduation", and really enjoyed it. I'll post a video of that once I get a chance to edit it down.


-Bob Hart

20 May, 2011

We are home

Some tears fell from a painful de-accessing, since everything was a bit sore and swollen from last night. But he recovered quick, and we hit the road.

19 May, 2011

New Day

Thing are better here, and Robert is comfortable. We should be released around 10:30 tonight.

Bit of a scare

It's about 3:30, and we are settling down from a tense ordeal. The needle that inserts into the port in Robert's chest somehow dislodged while he was sleeping. It came out of the port-a-cath, but not out of his chest. This allowed the sodium bicarb to continue to enter between the skin and the muscle, causing a large lump about 3/4 the size of a baseball. The good news is that it was just sodium bicarb. Had it been MTX or a vesicant it would have been dangerous. The risk in our situation was with the port itself. When the port-a-cath is regularly de-accessed, heparin is injected to prevent clotting. With the needled having been pulled loose without the heparin, and the port sitting for who knows how long while we slept, there was potential to get a clot in the port line. Compounding the issue was the fact that with his port area being so distended, it would be extremely difficult get it accessed again. There was a lot of tears and screams, a lot of fishing around withe the needle, but all is well as the port is accessed again. It flushed freely and had good blood return, indicating proper function. The sodium bicarb is again running to flush his system, get his toxicity levels lowered, and get us the hell out if here.

18 May, 2011

**Dispatch From the Field

As the end of the day crept upon us, we resigned ourselves to the notion that we weren't making it back to HQ tonight.  Mama had again left out for provisions, leaving us to fend for ourselves. With frothing horses, tired backs, and Corporal Roberts sour belly, we decided we had better make camp.  As we pitched our tent we came in contact with the indigenous tribe of this locale, who didn't seem to appreciate our camp idear in the least.  It seems that they are near entirely female!  Our inital excitement to this fact was short lived once we got to trading with the savages.  They all dress in funny clothes, talk funny and even wear some sort of internal listening devices around their necks.  And that aint nothin', every time we turn around they're tellin' us what to do!  Robert's got it the worst, they're always a' pullin and a' proddin at him. "Do this, don't do that", "swaller this, pee in that".  One of them even attacked him with a needle!  Hopefully tomorrow we can break camp, and get back where we belong.

They don't care for my antics here, if only I cared.

16 May, 2011

Back to the Hospital

We packed up and headed out this morning.
Here is Ben saying his goodbyes.

15 May, 2011

Never Surrender

We've enjoyed a nice week at home. Robert got sick quite a bit more than usual the first half of the week, but it didn't seem to bother him too much. As much as I'll be glad to see this round of hospital admissions behind us, the high ANC was a nice silver lining. When we move on, it will drop again and eventually he will return to lockdown. He was feeling well enough one afternoon to attend his schools field day. Not content with watching, he tried his hand at a few of the competitions. He little body tired easily but his heart did not, as he finished everything he started.

07 May, 2011

05 May, 2011

Held Over

Robert's labs came back, and he has not eliminated a sufficient amount of the MTX for us to be released.  They will take another level tomorrow evening, and we will likely be released then.

Visit

Kellie Pickler came to visit with the kids at Children's today.

02 May, 2011

Methotrexate

This is methotrexate... sure doesn't look like much.






















It looks like little more than an IV bag full of mountain dew. I find it amazing that when we are handling his urinal that we have to take care to wear rubber gloves, as contact with his urine post MTX could make us sick. Really? If it's dangerous coming out, what is it going in? I'll answer my own question and say it's the only option. That's exactly what it is and so far these poisons are working. Lord willing they will knock the hell out of this beast so as it will never attempt a return. Of course with all of the negative side effects, it surely has a positive one as well. Apparently, when you take it you get to eat your pie first at supper...score.
 

01 May, 2011

Sunday Evening

As the weekend closes we find ourselves at the end of a pleasant week.  Having no surprise hospital trips is something I would love to get used to.  We head to the hospital early in the morning for another week of High Density chemo.