Chris and I tried sleeping on the couch while Mike took the chair. Let’s just say that the buyer of that furniture better not run into me because they will be spending a night on both to get a clue. Around 4am, I gave up the fight opting to sleep on the floor, which was way more comfortable. Sad.
At 8am, Jesse woke up, which woke us all up. No biggie because the nurses were starting to come in.
First the clinician came in. While Mike took Christine to grab breakfast, she returned to change the bed. Jesse hates the hospital bed, and when she is awake she’d much rather be out of it.
Around 9:30, a volunteer stopped by to offer the girls crafts. She spent some time painting and crafting with them. The girls loved this and the attention. Christine talked and talked ant talked and talked. Don’t worry Jesse talked over her.
The teacher came by at 11:30 for a half hour. She laughed at how much both girls talked while they are together. I told her there are times I feel like I can’t catch my mind because they never stop talking. It is a good thing that both feel great enough to be talking so much.
As the teacher left, I was worrying about Jesse’s platelets. She was due to get them because her count was 11. They had pre-meded her at 11, but no sign of the platelets. Luckily Jesse has not run a fever since the temperatures taken right at the time she got blood yesterday. But with her ANC being 0 still, we aren’t moving.
The platelets were finally hung around 12:30pm. The nurse tried to flush the white line… nothing. Nothing going in, nothing coming out. This meant that Jesse would need TPA in the line to help break up clots. I am not surprised by this because I have been having trouble with the line for the last few days.
The nurse practitioner stopped by. Mike and I both voiced our concerns over the meeting we were supposed to have with the main oncologist today. This meeting is very important to us. We need to know what he is thinking. Yes I like to plan ahead. I want to know when Jesse and I will be home. She felt that it would be after 1pm before the oncologist could come see us.
Jesse was scheduled for an ultrasound of her kidneys and bladder today. But they added an ultrasound of her groin due to the swelling. Mike and I have noticed that since starting the meropenem the swelling has subsided. This really makes me feel like something is going on that we are just slapping a band-aid on.
And slapping the band-aid on is not good. This means that if we return home to recover from round 6, it is more than guaranteed we will end up in the hospital because of fever. Thus negating the reason for getting home.
As we left for the ultrasound, the social worker arrived. I hate that. I hate how people arrive at the worst possible times. I also hate not having a schedule while we are inpatient. Why can’t I know when to expect people while we are inpatient?
Around 2pm, I asked if anything had come back on the blood cultures and urine. The nurse said no, but in her experience if the analysis came back good, then it was a good sign of nothing coming back on either. We’ll see.
About 2:30pm, the line nurse came with the TPA. Fortunately she was able to get it into Jesse’s line. The TPA works to break up clots and often needs about an hour to sit in the line. Then the nurse draws it out instead of flushing it through like heprin. (So kind of like ethanol, it sits in the line breaking up clots. Ethanol works to prevent biofilm and therefore places for bacteria to hide).
About 3pm, the attending doctor, fellow, and medical student made the mistake of wandering into our room. I say that because they more than like left the room, and all said “Eee they are not happy.” The attending was very nice. I really like the guy. And he knows our home oncologist well. Even lit up when we mentioned his name.
The fellow was very nice, but she wanted to explain to us that they only deal with the acute. Honey, I get that. I know you only deal with the acute. I am using you as the vehicle to get to the guy who dealing with the long term, which is basically what I told them. And I think the way she was talking to Mike was making him really mad. He hears me voice my frustration of being treated all the time here like I just got off the boat, and he definitely got a taste of that with her.
I think the poor medical student didn’t know what to think. The attending acted like he has seen this before. The fellow told us we probably wouldn’t see our main oncologist today. The attending told me on the side that we would see him today. And I really feel like he made that happen. Plus when Jesse found out he was was buddies with our home oncologist, she was way more receptive to letting him examine her.
At 3:40pm, our main oncologist came through the door. Turns out, he ran into our home oncologist, who was his fellow 10 years ago. Not sure if our home oncologist warned him of my need to plan, but the oncologist here said, “I know you want to plan, but we just can’t right now.” I am strongly thinking he did… Wonder if they had a laugh about my Sherpa backpack. (I weighed it here… surprisingly only 30 lbs… and yes I was actually disappointed).
He told us that we can’t really determine what we are going to do until after Round 6. But the more we talked, I am not sure at this point we are going to get to round 6. He talked about her kidneys. Ifosphomide is hard on the kidneys, and in Jesse’s case, it has caused her kidneys to leak electrolytes. Hence her having to take sodium bicarbonate and potassium.
He told us that he had talked with the radiologist here. Radiology is a possibility because it has been awhile since she had radiation. And he asked her home oncologist to send him Jesse’s scans and radiation information from home.
He talked about needing to have her see the urologist here before starting round 6. From the way he sounded, if we do start Round 6 there is a good chance that Jesse will have stents put back in her ureters.
Mike and I asked him about the swelling and decrease in swelling in her groin since having meropenem. He feels that Jesse has an underlying infection which has not fully healed. Every time we knock her ANC to zero, it has room to grow. This infection might take months or years to fully heal. This for me raises the question of is it really safe to come home if Jesse does do round 6 of treatment because we’ll end up in the hospital there.
Mike asked about us coming home. The doctor said that he has never seen a kid get through ICE chemo without fevers. We could rush home, but we will more than likely end up in the hospital there with a fever till Jesse’s counts come up.
He was extremely surprised at how good Jesse looked. I guess he thought she’d be in the bed asleep. Instead Jesse was sitting on the couch between Mike and I. She did get into a fight with Chris while we were talking with the doctor, but a snap of my fingers put an end to that.
I also told the doctor that I am tired of the people not scheduling times when we are inpatient, and then all showing up at the same time. He mentioned a mental break. I am not sure I want to take that. Yes we might need it, but I need to get this done so Jesse and I can get home more permanently. I hate it here. So does Jesse. I feel like a mental break prolongs the pain of being in Memphis.
So basically the plan right now is:
- see if this is an infection in her urine or blood
- see the urologist
- talk with infectious disease doctors
- determine if her kidneys will let us do round 6
- if we do round 6, wait to see what scans tell us before we more onto the next phase
- If we do round 6, determine then if we put the stents back in
- After round 6 determine if we let her recover before radiation
Basically we are still in a holding pattern. If he would just communicate with us this stuff, we would not have to squeak so much to get a response. (Mr Daily’s, my senior government teacher, saying “The squeaky wheel gets the grease” always pops in my head.) But we do have a potential plan. This does mean we will be potentially delaying the start of round 6 due to scans. We will have to wait to see if they actually do scans. And then from there, what they will/ can do.
Mike and I are as happy as we can be with what we have been told. The doctor is pleased with how Jesse is recovering. And I guess this is the best we can ask for at this time. I am hoping that he understands I don’t fully expect the tumor to disappear. I just want to get it under control, and prevent her having to do this again as much as possible. He did make the comment to not worry about what I can’t control. Yeah… good luck with that.
Mike ran over to Grizzly for a shower. Then Chris and I have come over for a shower and to do laundry because Chris has no more pants. Trying to explain to her that she had to wear pjs till laundry is done is “fun.” I am going to buy a cattle prod for her as a hearing aid. Sheesh.
God bless you, Jesse, Chris, & Mike. I am glad you got a little info to help with your plan. And yes, I often think of Mr. Daily and how he said “The squeaky wheel gets the grease”….you keep on squeakin”!!!!!!!!! Squeak as often and as loud as you need!