Day 139-140

Day 139

Mike arrived about 11am. Jesse was so excited to see him.

The hospitalist told us Jesse had 75 platelets, 10.7 red blood, and 2.6 white blood count. Her weight was 14.3kg.

At 12:30pm, we started the last dose of antibody. For a day here, it was really mild. And by 6pm, we were released to the Grizzlies House. Jesse was so excited to get out.

Day 140

This place is crazy busy… and I am sure that half of the patient population is in isolation. Mike left for his aphresis at 8:15. I had my staff meeting and did some work. Jesse actually ate half of a muffin.

At 10, the clinic nurse called asking where we were. She sounded a tad harried. Our appointment was not until 10:30, but Jesse and I headed over to get the labs drawn. And the labs were not due to be drawn until 11:15, but because the rooms were filling up she asked us to come earlier.

The isolation nurse looked totally exasperated. She was out of rooms in the back. And she told me there are 8 upstairs in isolation. What is really scary is most are droplet. I have got to get Jesse out of here.

In clinic, I asked for the sterile urine cup and a regular one. I am trying to prevent the yo-yoing this place likes to do. But the nurse practitioner nixed ordering it even after I collected it. I bet she is planning one for Wednesday. I will not be here Wednesday, and neither will Jesse. We will be home where is it safer. All stuff I talked about with her last week. So frustrating to have that conversation totally ignored.

Amazingly Jesse’s weight was up from 14.3kg to 14.7kg. Little concerned the scale in the clinic is off.

The nurse practitioner came in around 11:30 to talk about Jesse going home on Tuesday. As she was looking Jesse over, her labs came back. Jesse’s platelets are actually up from 75 to 77 and so is her red blood (10.7 to 11.4). I asked to have her labs checked tomorrow to make sure she didn’t need a transfusion before heading back. The nurse practitioner also mentioned that radiation oncology was waiting on scans from Sentara. And when I asked for more information and if I needed to make a phone call… it was vague answers.

After she left, I tried going back to patient services. I had tried earlier in the morning, but the line was down the hall. Before running to the cafeteria, I went to check on Mike. He was halfway done by this point. The bag holding the natural killer cells looked really full. Mike told me later that the extra killer cells the harvest from him are given to other kids that need them.

Back in the room with Jesse, she and I waited for the main oncologist. While we waited I called rental car places for prices. Amazing that one company charges double what another company does.

At 1pm, we had not seen the main oncologist. Little perturbing considering we are heading home. Gives you more of that written off feeling (no worries, I tracked him down later… will explain when I get there). A little after 1pm, I asked about our appointment with the radiation oncologist.

It was 1:30pm when we were moved to radiation isolation. The fellow who came in was an interesting character. She did a great job of not listening to me and cementing that radiation oncologist live in a very different world from chemo oncologists. I told her she just finished ICE chemo, which was the last of 6 rounds of chemo. She wrote down 6 rounds of ICE chemo. I can see where she would misunderstand me. And I don’t think Jesse fixating on her facial birthmark helped either.

I asked her about proton versus radiation. She said, “You mean photon?” I don’t care what it is technically called. I know it’s x-rays (thank you Madame Curie). And at this point I just want to know which is better for Jesse, which one packs the biggest punch, and can we do this without sedation? Since I needed to get somewhere, I just started calling it photon therapy. She did explain the photon therapy could be shaped easier to hit the tumor than proton therapy could.

She left to go talk with the doctor. I have the feeling there was a deal of misinformation. When the doctor came in, a nurse joined us along with the fellow. They mentioned not having the records from Sentara. I asked them if they were having trouble getting them. The nurse then back tracked in such a way that I feel the ball has been dropped by St Jude.

The radiation oncologist talked about doing 18 rounds of radiation talking 4 weeks (turns out they need 7 to 10 days to set up the radiation machine). He mentioned hitting the new spot and the old spot. And that each round would take 30 to 40 minutes.

He then mentioned we had another round of chemo. This was big time news to me, and I did kind of flip out a little. I told him we had heard nothing about this other round. Then he mentioned we’d start in one to two weeks with radiation. This was completely different from what I have heard too. Jesse will not have any ANC… there is no way she can start radiation in 1 to 2 weeks. I told him she would not have any ANC for probably 3 to 4 weeks.

I asked him about the proton therapy. He mentioned that we might have trouble with that one because Jesse is a relapse. Proton places will probably not want to treat her. I also asked about doing this with no sedation. Last time Jesse had radiation, the back of her tongue turned black and food had no taste or a metal taste. My hope with no sedation is that Jesse will have more chances to eat. He said we could try it, but he didn’t seem too keen since she would have to be on the table 30 to 40 minutes.

They plan to shape the “photon” to hit her original tumor without hitting the kidneys and spine too much more. I should have asked if the radiation machines here deliver lower doses because this is kids.

He left a few minutes before Mike called to say he was done and locate us. Mike walked in the room a few minutes before two nurses from B clinic came to take us to the 4th floor B clinic. Poor Mike had a cold pack on his arm. Twenty minutes before the aphresis was done, the return line came out of the vein in his arm. Mike said it was painful, and from the swelling in his hand and arm, it looked painful.

Upstairs in B clinic, we were deposited in a room. These are rooms that used to be patient rooms. And when the new addition to the Chili’s Care Center is done, the 2nd floor of the main hospital will become patient rooms too. From the way I felt sitting up there today… I am concerned this is more opportunity to just deposit people into spaces to wait. The plus being they have their own toilet and a TV. The downside, I can see sitting there, forgotten for hours.

Jesse actually freaked a little. She was concerned that she was being put back in the hospital. After 30 minutes the physician assistant came in. He told us that Jesse would get Mike’s cells at 7pm. Not happy about being 7pm… I get so tired of this place thinking that I should be waiting on them to call.

The physican’s assistant returned with the doctor. I asked her if there was anyway to move the time up. I explained that we are planning to leave Memphis as soon as the 2 hour wait period after the natural killer cell infusion is done. Here’s to hoping…

While Mike and I were waiting on the doctor, I told him what the radiation oncologist said. The more I thought about what he said the angerier I got. I feel like this place makes decision without communicating with me. I am so tired of not being included in the conversation about the child I carried for 10 months.

Mike suggested I go back to D clinic and talk to our oncologist, especially since he didn’t come see us today. At first I said no that he’d just say he can tell me anything till scans are done next month. The more I thought about it, Mike was right. When he and Jesse headed back to the Grizzlies, I went to D Clinic.

On my way I ran into one of the wonderful nurses from the Medicine Room. She listened to me vent. And gave me some great advice. She said to keep pushing for what I felt was right. Don’t let them push me around. (Funny they were celebrating Compliance Week starting today… I am sure it is compliance for something else, but with the way we are treated here it feels like they are further trying to mold us into what they want. Parental zombies lurching through the hospital agreeing to everything with moans…)

The oncologist was seeing a patient upstairs. I talked with the nurse practitioner first. Without Jesse present she actually talked to me like an adult. And she mentioned burning Jesse’s scans to CD. I am very frustrated that no one can tell me the success level of treatment. Today radiation said the tumor had beautiful response. What is beautiful response? That is not quantitative. Why can’t anyone give me a quantitative answer. When I ask, I feel like I get put off.

I sat down to wait in a room. About 15 minutes later, I heard very loudly, “Where is Jesse’s mom? Did she leave?” I stepped out in the hallway saying “Hi, I am still here.” Sheesh.

Meeting with him did give me some answers. The plan currently is for Jesse to return for scans on June 12. We are done with the protocol. Until scans are done, we won’t really know the next step. They are thinking about more chemo. And they are even thinking about more antibody. If we do antibody, they will have to present to the FDA. And that will be a long, difficult process.

When I left him, I ran to the pharmacy to get Jesse’s medicines. Today Jesse starts the il-2 shots. I also needed to get neuronton, ethanol, GM-CSF, saline mouth rinse, and sodium bicarbonate. The nurse practitioner had called me to let me know that Jesse needed to start taking it again because of some electrolyte loss. Guess which medicine was not there… So back to clinic to ask them to order the sodium bicarbonate.

I ran down to check Jesse’s mail. Then to take home supplies to get a few supplies I needed.

Back at the Grizzlies, I gave Jesse her shot and started the ethanol study for today. The oncologist called. He had talked with the radiation oncologist. Turns out the guy totally misunderstood that Jesse was done with the protocol. He said we have three options:

1. Radiation preparation takes 7 to 10 days. Jesse and I could come at the end of May for a few days of simulation, plus CT scan and MRI. Then return for scans in June and stay for 3 weeks of radiation
2. We could wait to do the simulation when we come for scans in June. Then return home for a week before returning for 3 weeks of radiation.
3. See if the radiation oncologist at Sentara will see her again. And we could work out a plan of treatment that takes place there.

He then asked which I was leaning towards. I was honest with him. I told him I am leaning towards home because Jesse eats better there. I have another child at home I don’t want growing up resenting me because I have been gone. Plus being in isolation is depressing for Jesse. She can’t participate in anything here. At home at least outside the hospital, she can pretend to be a kid, not a sick miniature adult (or prisoner… locked away from the sun).

I am torn though. Should I do radiation at home? Or should we return to St Jude? Would it be better for her physically to get the treatment here? Spiritually, I know she would do better to get it at home…

Thank you Mt Pleasant Baptist Church Tuesday Morning Bible Study Group for the card. 🙂