May 27 – June 1, 2015

May 27, 2015

Last night Jesse waited me out to go to sleep. I kept telling her to go ahead while I finished up laundry, but she was determined to fall asleep when I did.

At 9:30pm, I took her temperature again. It was 97.9. When I woke at 2:30am, I took it – 98.9. By 6:30am, it had returned to 98.3.

I decided to request a bolus of fluid with dextrose to help her over the hump of waiting for the line placement. At 7am PT, she was not allowed to have anything to eat. After 11am PT, she would not be able to drink.

I am really concerned about her kidneys. And I am doubly concerned with her trying to get a fever. I was able to get her to drink 10 ounces of apple juice before the research nurse called me back.

The nurse requested we come over at 10:30am PT for the bolus of fluid. When we arrived Jesse’s temperature was 99.4. An hour later, it was 99.9. Thirty minutes later it was 100.5. At this point, Jesse had fallen asleep. I was seriously starting to freak out. Fever equals no procedure to place the line, no line equals no aphresis, no aphresis equals having to wait here.

Aroud 12pm PT, Jesse’s class called her. I woke her up to talk with them. While she was talking to them, the nurse came to check Jesse’s temperature – 99!!!

We finished up the bolus of fluids, then headed down to surgery to check in for her 1:45pm PT appointment time.

We met with the nurse, who went over Jesse’s information. Then the anthesologist, who did the same. And then the surgery team came in to ask the same questions. The anthesologist gave Jesse the option of medicine to go back or having me carry her back. Jesse actually opted to have me carry her back. A gown, cap, and protective coverings were brought for me to put over my clothes.

Also we met the first child life person here. She is moving to the oncology inpatient area in a month. She is filling in today in the surgery area of radiology. And offered to be with us tomorrow when they remove the line from Jesse’s neck (which might happen while she is awake… I have been told awake, but I am getting conflicting reports.). I really appreciate her kindess and willingness to help us out.

By 3pm, I was in the waiting room. At 3:15, the pager they give you went off. Tad bit disconcerning…

Turns out someone in the outside world has this pager number and calls it every once in awhile. Makes me think of the kid that keeps calling me because Britney obviously gave him the wrong number. First time he didn’t believe me so he called again. And he called a third time because he still did not believe me when I told him I really think she pulled a fast one on you.

The doctor called at 3:40pm to say the procedure might take a little longer because of blockage on the left side. Poor kid has had a CVL on that side. On the right side a CVL, a replacement CVL, and her port.

She asked me to not have anything to drink while she was in the procedure. I promised her I would not. I do have to admit I am pretty hungry… have not had a great deal to eat in the last week.

Now I need to get her out of surgery, through the PACU with no fever, through the aphresis tomorrow, clean the room at RMH and pay the bill, and get on the plane and out of here for a month.

Well that didn’t work. At 9:40pm PT, Jesse popped a fever of 101.3, and we headed to the ER for cultures. An infection in Jesse’s port requires it to be removed because it could kill her. I also asked them to do a sterile as possible urinanlysis.

Both came back negative in the prelimanry, but they will need 48 hours to know for sure if she has an infection. At 2am, Jesse and I were allowed to leave, but had to wait for the security guard to pick us up (ER pitched a fit that I was going to walk back to RMH). While we waited, we watched a raccon lumber across the parking lot. Finally at 2:30am, Jesse and I were at RMH.

May 28, 2015

At 7am, we were up and headed over to see if they would do the aphresis. Surprisingly even with her trying to run a fever, they did it. It took an hour to hook Jesse up to the machine. Her blood was pulled from her body, white blood cells and stem cells were centerfuged out, and the blood put back.

After 3 hours, they were done. While we waited Jesse and I asked about the code purple we kept hearing. Code purple is where they call security. They have patients that will not allow their ports to be accessed unless security is standing there.

At 1pm, the nutritionist came in. She told me that they were watching Jesse’s weight. If it dropped below a number (which she never told me what that number is), they would stick an NG tube down Jesse. I told her we would try peractin first. And now that I think of it, most of the patients I saw in Seattle had the NG tubes shoved in them.

After seeing her, Jesse and I headed down to have the aphresis line removed. This was done without anethsia. And for Jesse it was very painful, but looking back… I think she was hurting all over, and this compounded it.

As we left the building, the clinic called. They had the consent for us about the pd1 inhibitor. I have heard of Sloan possibly offering this to patients. I can’t see going all the way West when I can do this closer to home. The doctor got a little snippy about whether or not they have the Merck drug. I am already not overly impressed with her. She came in to check on the aphresis that morning, but didn’t bother to speak to us. And she hasn’t bothered to communicate with our home doctor… feel like she acts like the doctor at St Jude (and that is not a compliment).

We returned to RMH to clean and hope to get out of there before Jesse popped a fever.

Unfortunately we were not successful. At 7pm, Jesse had a fever of 102.4.

At the ER, Jesse’s heart rate was 161, and the doctor was making noises that she was not leaving with a heart rate like that. They decided to give her Cetrifixone (rocefrin) and a bolus of fluid. After this her heart rate dropped to 145. But when the doctor came in, it hopped right back up.

After much back and forth (and having to run through 3 buildings to get to the pharmacy), Jesse and I were allowed to leave at 10pm. The driver taking us to the airport had been waiting since 8:30pm for us. I appreciate his patience.

May 29, 2015

At 12:35am PT, Jesse and I flew out of Seattle. I am really surprised at how busy the airport was at that time. That and I would like to thank the TSA agent that stole my awesome green belt. I had put it in the suitcase to save Jesse and I time through screening. I really liked that belt because it had tons of rivet holes, durable cloth, and army green.

We landed in Chicago at 4am (6 am there). What a crazy airport!

By 8:38am, Jesse and I were in a puddle jumper to Richmond. She did have a fever in flight, but was able to sleep some. I was not able to.

Mike met us at Richmond. We headed home to relax. I grabbed a shower and a nap while Mike went to the store. In the past 48 hours I had 3 hours of sleep. At 4pm he woke me because Jesse was running another fever. After calling the clinic, we headed to CHKD’s ER.

At the ER, Jesse received more Ceftrixone and another antibiotic. We cultured her lines for signs of infection. Her cultures of urine and blood in Seattle are not growing anything.

By 10:45pm, we were heading out of the ER.

Jesse is hurting constantly. Her back had been better when on the steriods, but we can’t stay on those because of the t-cells. We put her back on neurontin, but that takes time for the body to realize you are taking it.

May 30 & 31, 2015

On Saturday and Sunday night, she popped a fever. But because of the anitbiotic, we were allowed to give her Tylenol and stay home.

We had several times where it took her an hour to pee.

June 1, 2015

Monday morning, Jesse woke me bright and early. She was extremely restless last night. Combined with the length of time it is taking her to pee, fever, and being time for more chemo; the doctor had okayed us coming to clinic today.

As I was getting her ready, Jesse began complaining that her right side hurt. This side has some tumor below her kidney. On arriving at clinic, she complained her right leg hurt. When the doctor looked at her scans, she strongly felt this pain was from a lesion near her right hip. Jesse began crying when the doctor felt it.

The doctor feels that Jesse’s fever is tumor related (meaning her immune system is trying to fight it… but struggling). She ordered chemo (temolozide and topetecan) in hopes that this will help with the pain. And Jesse will go home with backpack Fred (IV Fluids) to help her kidneys clear the chemo.

She sent us for an ultrasound of Jesse’s kidneys. It took 2 hours to get the ultrasound done. 1 hour for registration to register us… and another for the technician to come get us, do the ultrasound, and wait for response from the radiologist.

Yes, I am frustrated because all that delayed Jesse getting her chemo and blood. It will be 7:30pm before we are able to leave, but at least we get to leave.

The ultrasound returned showing no change in the kidneys. Jesse really needs to have a CT Scan to see what is happening. And the oxycodone might be giving the sensation of having to pee when she doesn’t really have too.

Jesse has been sleeping for the last hour. I think that the increase in her neurontin plus the increase in oxycodone has finally allowed her to not be hurting as much. Her pain level has not decreased below 2 in a week now. And I am really concerned that her tumors have exploded.

With this concern, I am wondering if we should return to Seattle. Jesse is one month off her last chemo. If we return to Seattle, they will give her chemo. Then a week later, her t-cells back. Then we have to wait a month. This puts her out from chemo 5 weeks (staying out there a total of 6 weeks)… are we wasting time? Should we see if she carries the pd1 protein and try the Keytruda? All of this will be discussed with our home oncologist tomorrow. He was away at a conference today, but we have been emailing back and forth. I really appreciate that even though he is not physically here, I can still communicate with him. I have not gotten that feeling at Seattle.

Plus I don’t want to short Jesse time with her dad, sister, friends, and family if things are getting worse. And the t-cell has not had enough data complied yet to know if it works for neuroblastoma. The kid that is stable: is he stable from the chemo or the t-cells? How do they know? All of this is stuff to talk over with our doctor tomorrow.

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