Friday, June 19, 2015

Mike 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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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.

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.

Jesse had a really hard time getting comfortable last night to go to sleep. And this morning she was complaining of pain in her right femur and both hips. During the day that pain has now migrated back to the right flank. I have been giving her oxycodone as much as allowed, but it is not really touching the pain.

Last night Jesse and I decided (with conveniencing from me) to call early about getting a bolus of fluids. I have been pushing her to drink all weekend, but I was concerned that it was not enough.

As we were walking over to hit the Starbucks, the research nurse called asking us to come early for labs. And as feared her labs showed her creatin to be 0.7. At home the last few weeks it has been 0.6, and month before last month it was 0.5.

This creatin is a test of the kidney function. And a huge deal. Jesse’s kidneys are both swollen (it’s called hydronephrosis). This swelling prevents them from draining correctly. And having her kidneys empty is a big deal because many of the chemos Jesse has been exposed to are brutal on the kidneys.

Another reason it is a big deal is the protein they will be attaching to Jesse’s re-engineered t-cells. Our bodies have certain proteins on our organs to keep our immune system from attacking and killing our organs. Neuroblastoma, sadly, is wise enough to have the same proteins. Since this is new treatment, the researchers want to make sure Jesse’s organs are functioning as well as possible in case the immune system gets confused and attacks the organs. Also I learned this weekend that your kidneys help with regulating your blood pressure.

The other obstacle in our way for having the aphresis line placed are Jesse’s platelets. Interventional Radiology will not do surgery if platelets are below 50. Jesse’s this morning were 48…. But they can give her a bag of platelets. And this will allow us to move forward.

While Jesse was receiving the bolus of fluid, the doctor ordered a renal ultrasound to make sure she did not have an obstruction. We also discussed what we could do if Jesse did not qualify for the t-cell trial.

Merck has developed a drug called a PD1 inhibitor. The PD is short for Programmed Death Cell. Our organs also have a version of this protein, which tells the immune system not to kill it. Neuroblastoma (And melanoma – the cancer this drug has been very effective against) also have the same protein to save it from being killed by the immune system. Seattle has a trial opening maybe for this one, and if the t-cell doesn’t work we have the option of having Jesse’s tumor tested to see if she carries the marker for that protein. I am not sure at this time if we will have to go that route. And I am not sure how much we’ll get to have that drug at home (which if they would let us… oh how wonderful that would be).

Around 2:30pm PT, Jesse and I headed down to ultrasound. An hour later, we were back upstairs. From the ultrasound we learned that Jesse’s kidneys are a little more swollen than the ultrasound in March, but not changed from the CT scan on May 15.

I have a feeling that if we do not find something to stop the tumor and cause some shrinkage, Jesse will have nephrostomy bags again. Not something I want for her at all, but we might not have a choice.

All of this is excruciatingly unfair to her. She should be having fun at home with her family. And repeatedly she says to me, “It’s not fair” followed by “I’m glad I’m the one that has to do this, and not you guys.”

After talking with the doctor about her ultrasound, they ordered some platelets to help Jesse with tomorrow’s procedure. The trouble is… her temperature at 5:30pm PT was 37.6. Fever is considered 38.3. And here, it is a hospital stay no matter how high the ANC. Please Lord, cut the kid a break. Please let her temperature stay below 37.2 or 37.3. I am really concerned that her kidneys are trying to get infected.

We’ll finish platelets in about 30 minutes.

Thank you Norge School and other family and friends for your help and support in getting to Seattle to try this study for Jesse. We really appreciate your generosity.

Also I have decided after being in Seattle that I am glad I am not a weatherman… Poor guys, they called for sun all weekend… and it is just now shining on us.

Yes I have not posted in quite sometime. We have been busy and I have been a tad lazy when it comes to the blog. Horrible.

Since December we have been traveling back and forth between Hershey, PA; home; and CHKD. I love the staff at Hershey as much as I love Jesse’s team at CHKD.

Sadly in April after her 3rd PET Scan, it was discovered she has new growth. A brand new lesion at L4 vertabrae and a new possible location in her left sholuder in a lymph node. I had a feeling this was coming because Jesse had been complaining on right flank pain a week earlier. And on the ultrasound, I could see the technician measure what I call tumor #2 – and it was a larger size than I remember from previous PET and CT Scans.

The doctor in Hershey helped us get some extra medicine to maybe hold Jesse for a month while we figured out our next steps. I really appreciate that effort. I do wish that it had worked, but Jesse’s tumor has other ideas.

At home we felt trying to get into a t-cell study would be the best plan for Jesse (maybe). In cancer, it is always maybes. Our doctor reached out the Seattle Children’s Hospital and the NIH in DC. Seattle responded immeditately. The NIH has yet to bother to do so. Plus Seattle is specializing in neuroblastoma only for this study, where as NIH is covering several solid tumors.

Once Jesse was accepted to be screened for the study, we needed to get her scans to Seattle. As we were in the process of doing all that, Jesse started having more and more pain on her right flank. By Saturday, April 26, she was in so much pain she was laying in the floor. I was giving her oxycodone every 3 hours, but she was still vomiting from the pain.

We made the decision to take her to the ER at CHKD because something was very wrong. In the ER, we could not get her to pee. In her defense, trying to pee in a bathroom with some freak on the other side knocking every 5 minutes and me yelling for them to go find another bathroom, really doesn’t help.

At almost midnight, the ER doctors order a catheter put in Jesse, much to her displeasure. Then we were moved upstairs. Our fear at that moment was we were losing her kidneys.

The next morning, our nurse was able to talk with the doctor for oncology, and the catheter was removed. Fortunately Jesse went to the bathroom on her own. They order a function test of her kidneys on Monday.

The test showed that her kidneys have not really lost function since 2012. And our main doctor felt that the lesion at L4 is pushing on her nerve in the right location to cause the pain radiating through her right flank.

They decided to give her a huge dose of steroids and start temolozide and topetecan. Jesse and I remained at CHKD until Saturday while she finished the chemo.

In the background, the doctors were still coordinating getting us to Seattle. But with the week delay, Jesse would have to have an MIBG, CT Scan, another Echo/EKG, bone marrow biopsy, and her blood tests redone.

I did go back and forth with Seattle and our doctor about doing the scans at home. The more I can keep Jesse in our home, the better I think this will be for her.

Making that change made it really difficult to get them to pin down an exact appointment date. I spent a week calling Seattle, and getting very angry with them because I could not get someone to call me back. This lack of communication cost me an extra $800 for our flights.

I did attempt to call the social worker at Seattle for help, but she was worthless. In fact telling me that my home social worker needed to help us. I am embarrassed to say, I didn’t even know our home social worker’s last name until this. We’ve talked to her quite a lot, but haven’t really needed to bug her for anything.

Our home social worker was fabulous in trying to call the social worker in Seattle for help. Come to find out… woman was leaving as of the day before our appointment. She had already checked out. Luckily I had called RMH in Seattle 2 weeks before, and they did have a room for us. From what the Seattle social worker told us, it takes 2 weeks to get into RMH.

On Friday we went to the clinic for the first time in Seattle. I managed to come in the back and long way. But it did give us a chance to see some of the hospital.

Jesse’s line would not cooperate. And she had to have an x-ray before they would but the TPA in the line. While we waited for the TPA to break up sediment in her port, we met with the doctor and 2 research nurses to consent for the clinical study.

The study will take her t-cells, modify them, give them back to her, and hope this is enough to stop the tumor using her own immune system.

For this week, Jesse will have a line placed in her neck for the aphresis. This aphresis will happen the day after the line is placed. But this will only happen if Jesse’s platelets are above 50. Please Lord let them be above 50.

On Friday her platelets were 69, but she did have a transfusion on Tuesday. Her ANC on Tuesday was 1792. On Friday, it was 5150. I am praying that this is a really good sign.

Once her t-cells are taken, they will go to a lab at the University of Washington where they will have a protein added. While this happens, which could take a month, Jesse and I will return to Virginia.

When they are ready, we will return for scans, 4 days of chemo, and the 20 minute infusion of cells. Then we’ll wait for a month to see what happens. I am starting to think we’ll be out here a total of 6 weeks. If things are okay at day 28, we can fly home and return on day 42 for a checkup. After that, they will allow our home doctor to get the samples they need.

While we met with the doctor, I asked her about the recent press release from Baylor suggesting that GCSF helps the cancer stem cells. I think I made her mad. Turns out a study was done 10 years ago in Europe looking at the same thing. That study did not find that GCSF helps the cancer stem cells. And she told me we all have GCSF in our bodies. When our white blood counts get low, our body tells our personal GCSF to get busy. And with that I wonder if there is such a thing for platelets… a way to activate them as the GCSF shot does. That would be an incredible medical breakthrough in my opinion 🙂

After meeting with the doctor, one of the nurses gave us a tour of the clinic. This clinic is on the 8th floor of the hospital. I think this is definitely the largest children’s hospital we have been to.

On Saturday, Jesse and I rode the bus down to the aquarium. Virginia Beach feels like they have a bigger aquarium, which is mind blowing to me. We found Beechers, but the line was down the street. And the same was happening at the original Starbucks. I think we hit town when the cruise ships did.

We did see the fish market, but it was so crowded that we didn’t stay long. Plus the smell was a bit much for Jesse.

Sunday, we met up with another little fighter who was the first to do the t-cell study. We had a really great time hangout with them. And on Tuesday, they get to go home from another clinic trial they are trying.

At the moment, Jesse’s flank pain is overshadowed by the pain from her bone marrow biopsies. And from the CT Scan, we know the lesion at L4 has shrunk. And we are praying that we can get on our 12:35am PT flight to Virginia on Friday morning.