June 19 thru July 3, 2015

Friday, June 19, 2015

newpointMike and I decided to take the girls camping for the weekend. We had heard nothing from Seattle about Jesse’s t-cells. At 6pm, I received an email with a tentative schedule. They would need us to arrive on June 28th to start the process.

I will be bluntly honest. I am not happy with the amount of communication from this facility. Sure they are #5 for pediatric oncology in Newsweek. But with that I retort… St Jude is #7.

Fortunately on Sunday I was able to get one way plane tickets for Jesse and I for $647.

Yes we had talked about not going back, but with Jesse’s pain subsiding and her becoming more active… we felt that we have to try this. Jesse agreed to come because we said we’d celebrate her birthday when we returned home.

Saturday, June 27, 2015

I brought the girls home early from the campground because Jesse was begging to go home. At 6pm, she fell asleep on the couch. This is not normal for her. On taking her temperature, it was 101. But when I took it 15 minutes later, it had returned to 99.7.  Much to Jesse dismay, we took her to the ER at CHKD. The doctor took blood cultures from her port, gave her rocefrin, a prescription, and sent on us on our way at 11:30pm EST.

As we pulled into our neighborhood at 12:30pm, police blocked our road. They would not say why we could not get into our neighborhood. And it was 2 am EST before we could get to the house.  With us having to leave to catch a flight at 6 am and the girls being freaked out, I only got 2 hours and 15 minutes of sleep.

Sunday, June 28, 2015 

After over a week of camping, Jesse and I boarded a plane for Seattle. I noticed during that last week her activity level was decreasing, and she was getting angry faster. She also began asking for pain medicine more. And on Saturday, I put half a fentynol patch back on her.

She slept the entire plane rides. And caring her through the airport was extremely painful for her.

In Seattle, we had to take the bus, then a train, then a bus, and another bus. If you ever travel to Seattle, do not trust the Trip App they have. And make sure you have a ticket for the train. I got confused, and ran into a snarky enforcement guy who told me to pay better attention. Excuse me for feeling slightly overwhelmed. Not sure if he gave me a citation for missing where I was supposed to check in or not.

Our trip ended finally with a friendly hotel clerk at the Talaris. He was super nice. And the facility at Talaris is really nice.

I carried Jesse up to Burgermaster for dinner. The clerk behind the desk commented on how peppy she was. And at that point she was still peppy.

Monday, June 29, 2015

Our first appointment was at 8:30am for Jesse to be accessed. The scheduler had apologized for the appointment being so early, but she didn’t realize that we are from the East Coast :). She also complained to me about not finding out till last Tuesday we were coming and trying to get everything for Jesse scheduled. Oh Honey… I feel your frustration with the lack of communication around this place. I have yet to lay eyes on a research nurse again. (CHKD and Hershey, PA have spoiled us).

After accessing Jesse, we had her weight, blood pressure, and temperature taken. Then we went to a room to wait for the nurse practitioner.

She discussed the medicines Jesse is taking. I confused her greatly on Jesse’s macrodantin (brand name)/ macrobid (generic name) nitrofurnation. I want the generic version because of cost to us. Our insurance charges $300 for brand name medicines. The highest we have to pay out of pocket for generic medicines is $50. Crazy, right? From talking to her, I am going to have to order the medicines from home and have Mike ship them to me.

Then she said that we would not need to see her on Wednesday. And that she’d have that removed from the schedule. (Didn’t get removed from schedule).

Ronald McDonald House (RMH) was still full. Jesse and I returned to the Talaris, and then I carried her to Ram’s Brewery. She really enjoyed dinner.

Tuesday, June 30, 2015

Because of having a needle stuck in her hips to get out bone marrow and needing anesthesia, Jesse could not eat. I had asked for D5 (an IV fluid with dextrose and saline) to help her get through. Afterwards, she was scheduled for a CT Scan.

At 10:50 am PST, they began the bone marrow biopsy. The nurses must not realize the thinness of the door between the operating area and waiting area. I heard them talking about something not being right.

When they brought Jesse to the recovery area, I asked if everything was okay. The anesthesiologist told me that her oxygen dipped requiring them to give her oxygen.

While waiting for Jesse to wake up, the nurse started the D5. Because of the CT Scan procedure, Jesse didn’t have enough time to eat between bone marrow biopsy and CT Scan. And based on her glucose crashing episodes at Hershey prior to PET Scans, I knew she would need the help. When her sugar crashes, Jesse sleeps all the time and starts puking.

Why no eating for the CT Scan? Oral contrast. I hate oral contrast. Our home hospital doesn’t torture kids with that crap. Yes it has no taste, but it makes Jesse nauseous every time. The kids have to stop eating 4 hours before time for the contrast. They can’t have clears 30 minutes before the contrast here. And they still push contrast through her port.

Before the CT Scan, I tried to get Jesse to pee. But the narcotics are causing her bladder to feel like she has to go, but nothing comes out. After 30 minutes of trying, we decided to proceed with the scan. Due to the lack of fluids, it took Jesse 8 hours to pee.

When the CT Scan completed, the nuclear medicine people brought the MIBG radioactive isotope for her. The tech only flushed with one saline. I have always seen 2 or three used… Really hope this didn’t screw her for the MIBG itself.

After finishing around 3 pm PST, Jesse and I headed to RMH. Our room is on the second floor with a bay window and window seat. It is really nice. And I really like the house manager here. She is extremely helpful and understanding.

Unfortunately the judgmental, controlling author was still here. (Luckily he left on Thursday… and I overheard another mother saying that we all won now that he was gone.)

Wednesday, July 1, 2015

When the scheduler made the schedule, she had asked if Jesse could do the MIBG awake. This would be her 5th one awake. Even when she is hurting, the kid can do it. But on the paper I received, they had her scheduled for sedation.

And when I asked for a schedule reprint on Tuesday, her 9:15 am PST appointment with the nurse practitioner was still on there. Since it was there, I figured I’d better show up.

At 10 am PST, I had a webinar. Our appointment was at 9:15 am PST. The nurse practitioner did not appear until 9:40 am PST. Turns out she’d paged the doctor to also see Jesse. While talking with the doctor, I did a quick sound check for the webinar.

Jesse will receive her t-cells back on July 8. She will receive the largest dose yet. Prior to the t-cells being given back, she will have 4 days of flurdarbine and 2 days of inpatient cyclophospmide (or cytoxin). I am praying that cytoxin gets into her tumor and knocks some of it back. The fludarbine is mainly for lowering her lymphocytes to make room for the t-cells to expand inside Jesse’s body.

Once the t-cells get into Jesse’s body, they hope they will grow delivering the needed proteins to the immune system to tell it that the neuroblastoma cells need to go.

In the lab, her t-cells are growing great. But we have to wait to see what will happen inside her body.

The doctor told me that her CT Scan showed an increase in tumor sizes (which we figured). And the lesions noticed on the PET Scan in April on Jesse’s liver are larger and more than likely neuroblastoma. I think the doctor was worried to tell me because not knowing me and what my reaction might be. I told her it is what it is. She did give me a copy of the CT Scan, but I rally don’t feel like reading it. However it will come in handy for our doctor back home, maybe.

Jesse’s MIBG was not scheduled till 1:45 pm, but we were done at 10:30 am. I didn’t want to drag her back to RMH because the road is bumpy. And with her pain increasing, it is getting harder for her to get around.

We went down to radiology and checked in. This seemed to freak them out, even though I told them, “We are early. We can wait.” And it didn’t help that everyone else seemed to be late because of a bad accident on the interstate.

While we were waiting, the first kid to get his t-cells came for his MIBG. We really enjoy visiting with him and his mom.

We were taken back to sedation at 1:45 pm. I was able to convenience the nurse and anesthesiologist that Jesse could do the MIBG awake. They agreed and allowed her to eat and drink. At almost 2:30 pm, Jesse was taken back to scan. They allowed her to pick out a movie to watch. She chose Scooby-Doo.

The machine scanned her head one way for 5 minutes, then another way for 5 minutes. Her chest was scanned for 5 minutes. Her legs took another 5 minutes. Jesse really struggled laying on the table because her back hurt.

We let her take a break, then began the long scan – 30 minutes. Ten minutes in the technician stopped the test. She didn’t have it positioned in the right place to scan Jesse’s body.

Finally the long portion finished, and a quick CT Scan was done. The technician had to check with the radiologist to make sure the images were okay.

At 4:30 pm, Jesse and I went back up to the clinic for her port to hepranized.

We arrived back at RMH around 5:30 pm.

Thursday, July 2, 2015

Jesse’s first dose of fludarbine was scheduled for 11:30 am. They also wanted to give her a bolus of fluids. Currently her creatin is at .7. To get the t-cells back her creatin needs to drop to .6. They are hoping that giving her fluids of the next 4 days, then taking the labs on Sunday will give the results they want.

Jesse woke at 8 am PST. And she actually wanted breakfast. Afterwards we headed over for the infusion. The flurdabine took 30 minutes to infuse, and the fluid bolus was over an hour.

As expected her appetite tanked during the afternoon. But after throwing up, she wanted to try pizza for dinner.

After dinner her pain level increased from 5 to 6. I gave her oxycodone, but that didn’t seem to help. I rubbed her back. She kept saying it was her bone marrow sites, but then would move my hand up to about L4 on her back.

It took her a long time to fall asleep.

Friday, July 3, 2015

Jesse’s infusion time today was 10:30 am PST. She did not want to get out of bed. I had to carry her down the stairs. Riding in the wagon seemed excuraitingly painful for her.

Once there, we got her some heat packs. But they only helped briefly. I met with the oncology fellow, who will be part of the pain team who admits Jesse tomorrow for her cytoxin doses.

She suggested putting Jesse’s other half of fentynol patch on. And to give her oxycodone more than every 6 hours. The head doctor had suggested giving Jesse oxycodone only for breakthrough pain because she was dosing when the doctor saw her on Wednesday.

I hate snowing Jesse because it just seems to knock her out. But I think until we can get effective-for-neuroblastoma chemo in her… I don’t have much of a choice. Pain medication is very frustrating to me. I don’t feel that the oxycodone or fentynol is working for her pain. All it is doing is knocking her out and causing funky dreams.

A few minutes ago she scared the mess out of me. Her eyes were wide open. I jumped up to check on her, and she suddenly started pushing on the pillow claiming to be taking a photo of me.

Tomorrow she will be admitted for chemo. We have to wait for the hospital to call to say they have room, which might be as early as 9 am PST.

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10000miles

To help with medical cost and travel expenses, I have created a t-shirt campaign. You can also get a sweatshirt, tank top, and kid sizes.

teespring.com/jessegracesjourney

This will be open until 7/9/2015. 

And a friend has created a GoFundMe page for Jesse. Melonie created this for us when we first traveled to St Jude.

If you would like to donate to the GoFundMe, Click Here

We really appreciate the help and prayers.

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If you want to send Jesse a card, our current address is

Jesse Hall Room 207
Ronald McDonald House
5130 40th Avenue NE
Seattle, WA 98105

Please do not send anything large. I can’t get it home easily because we are flying. And with Jesse’s current condition walking to the FedEx office to ship it home is out.

Posted in Seattle
3 comments on “June 19 thru July 3, 2015
  1. Brenda Yetter says:

    Hi Jesse, this is Brenda, your wagon racing crazy nurse at CHKD. Want to tell you that I am thinking about you and pray everything goes OK today. Happy 4th of July. Hopefully you can see some fireworks from your room. I will try to send you some mail. Keep fighting. I love You!

  2. Reba Wray Berry says:

    Jesse and Soosan: I am your Mom Martha’s first cousin.and I just wanted to remind you that I am praying for both of you. don’t loose hope in all the frustration– I admire you.

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