Day 114 & 115 at St Jude

Day 114

This morning Mike and Chris left at 8 to head back to Virginia. It’s always hard to watch them go. And I think getting harder.

Hopefully we’ll get out later today and not have to deal with the “I know more than thou, even though I have no kids and I’m 26” attitude of the nurse. Just treat me as an equal in Jesse’s care and not like a person who shouldn’t be allowed to have kids. Also don’t come in with fake attitude and look down on my because I got McDonald’s for my kid. She weighs 14.2kg (31.24 lbs). I am trying to get her to eat anything… and you aren’t in the room witnessing the battle of “you need to eat” vs “I don’t want to eat because the food here taste like metal.”

The nurse practitioner came in shortly after Mike and Chris left. She looked at Jesse’s groin. To me it looks to be swelling again, and the nurse practitioner agreed. Infectious Disease has okayed clydamicin, but we are concerned to use it for 2 main reasons. 1 is diahrrea. 2 is C. diff. We do not want to cause anything to let that run wild in her body. The nurse practitioner recommended we do an ultrasound when Jesse’s counts recover more.

Today her ANC has finally reached 100. Red blood is at 9, platelets are 65, and white blood count is 0.2. The swelling might be a sign of infections. The ultrasound will allow them to measure those lymph nodes again.

The nurse practitioner also mentioned her goal today was to see if the attending would let us leave since we are staying at the Grizzlies House. I am not holding her to that. If we do go, Jesse will be on eclipse cefepime (that’s the right spelling of sephlapin). And we are looking at taking nitrofurnation for months now.

Around 11am, our insurance company representative called. Yeah. I am not sure if I believe her when she says that they will do whatever they can to help us. Then says she understand what we are dealing with because she is a mom. Do you really? Tonight you will go home and your kids will get up tomorrow without having to go over to see the doctor. And needless to say I do not believe them in anyway shape or form that they would do whatever they could to help us. The only reason they are offering that is because we are at St Jude, and they probably have some deal worked out that is good for their bottom line.

By 1:30pm, we were done with the ethanol dwells for Wednesday. The nurse practitioner came by to see what we’d need outpatient. The plan is to let Jesse out. And until her ANC reaches 500, we have to go to clinic everyday. She will also stay on the cefepime until she reaches 500. This needs to be done as eclipses.

She also told us that the urine we collected sterile today counts as sample 1 if it comes back clean. Meaning next week will be sample 2. If that returns clean, we’ll be out of isolation… and more than likely back to the boarding house 🙁 I told the nurse practitioner that being in isolation was far safer for Jesse having no ANC. There were at least 4 charter bus loads of people here yesterday touring St Jude. How many of them had the sniffles but felt they needed to come anyway since they booked this trip? Why in the world would you come tour the inside of a hospital where people are trying to fight cancer and have no ANC? Why would you come see people when they are looking so sick, missing limbs, and have visible surgery scars? Do they get a feeling of doing good because they donate here and then tour this place? Why can’t they give without having to come and see and bring what ever disease they might be carrying with them? There are times that some of them make me feel like an animal at the zoo.

I happened to pass the doctors in the hall. And I have a feeling that since we spoke there, they aren’t coming in here. The attending commented that I was the type to not sleep a whole lot. I told him that the minute clinic says I can return to Virginia, I will drive all night to get there. I will not stay in this place one minute longer. They mentioned they would be by once they knew all the details. (will be surprised if we see them). They plan to watch the swelling over the next several days to see what happens as her ANC increases.

The specialty pharmacy called to make sure we are at the Grizzilies so they send the medicine to the right place. The nurse popped her head in and asked if a tone of disbelief if I have ever done eclipses. I just nodded my head. I am so tired of being looked down on, especially by people with no idea of what I know or where I have been. There needs to be a note in the computer detailing what I know. I have had to tell them every morning and night to not give her Zantac. Jesse only takes that when she is doing the antibody.

So now we are waiting, waiting, waiting. I have a feeling they won’t let us leave till after I give her her shot at 6pm (because I am not capable of doing that on my own either in their minds.)

Day 115

Yep, we weren’t able to leave until the shot was done. Jesse and I returned to our room at the Grizzlies.

This morning we went over to get her labs done. We arrived at 9am. From the clinician, we found out there is another child in isolation as of yesterday. Poor kid came for scans and picked up the flu in the airport. Great, just great.

Jesse got really bored, really quick waiting for her blood counts to come back. At 11am, her teacher arrived. I took this chance to run get Jesse a snack bag since she was actually saying she was hungry. The only thing she eats from the bag is the Goldfish. Plus I needed to renew our room at the Grizzlies since we have not been told we are out of isolation yet. (I don’t want to go back to RMH. Do not want to go back to RMH.)

When I returned the teacher and Jesse told me a doctor had actually put on the gown and came in the room to see us. Since I had run into the nurse practitioner in the hall (who obviously wanted to avoid me since she didn’t have the FLMA for Mike done yet… and for me the least of our concerns), I knew a resident was with them today.

The resident returned a few minutes later. Great kid. He actually treated me like an equal in Jesse’s care. And God bless him, he actually said at 11:30am he was going to get the main oncologist. I warned him that he might be at lunch. The teacher was laughing after he left. And since I was feeling like a smart Alec I quipped that the poor kid was probably going to come back without body parts for interrupting lunch.

To my surprise I could hear the main oncologist in the hall talking about why Jesse was still in isolation. Then he actually came in, talked with Jesse, checked her over, and asked if I had any questions. He was again extremely surprised by her energy level and appearance for having no ANC. She actually tried skipping rope this afternoon while I was working out. Luckily we got through without any falls. And yes might not have been the best plan with her platelets being 34. But she wants to move, I don’t want to deny that.

I asked when we were planning to see the urologist and nephrologist. And that’s when I found out Jesse’s ANC had been miscounted yesterday. She is still at 0. Her white blood count came back as .2 again. Until Jesse’s ANC comes up, we are just hanging out and praying she doesn’t have another fever. I hate miscounts.

Since her platelet count hadn’t return, we opted to wait. Luckily 15 minutes later, it came back as 34. I have a feeling tomorrow she will be needing a transfusion. Her red blood came back as 10. She was 9 yesterday. As for her weight, she is 14.4kg.

While we were waiting, a very loud obnoxious nurse came in to draw Jesse’s labs with a nursing student in tow. I am not sure if she felt the need to show of in front of this guy, but she started talking to me like I have never witnessed Jesse have labs drawn. I calmly told her this was the 5th round of this treatment we have been through. Heck I could take the labs at this point. And she told the nursing student that they clean the top of the clave for 8 seconds, sides for 8 seconds, and let dry for 8 seconds. Interesting, the line doctor the other day said 15 for the grooved area of the clave.

I was able to catch the clinician before she disappeared to the lunchroom. Tomorrow Jesse and I will have to go back for counts. Once she reaches 500, we can stop the cefepime. At 2000 ANC we can stop the GM-CSF shots. To start round 6, her platelets have to be at 75 and ANC 750 once she is off the shots. I think right now we are looking at possibly having to wait an additional 2 weeks before/ if we can do round 6. Rats

Tonight Jesse will have another dose of cefepime at 10pm. Then tomorrow we have to be over at 9am to get labs. Crossing fingers and toes for no fevers and for some ANC. I made the mistake of letting her see the pictures of the kids at the campground at home. She had a moment of really wanting to be with them. We called her dad and the prospect of facetiming with them is making her a little happier.

Thank you for the well wishes from Mt Pleasant Baptist Church Tuesday Morning Bible study, Mom, Ann, Uncle Jerry and Aunt Carolyn, Community Presbyterian Church, Mrs. Delo, an Mrs Betty.

Thank you also to the class of 97 Tidewater Academy. Thank you so much for helping us financially with trips for Mike and Chris to come see Jesse. We are very humbled by what you have done to help us 🙂