I think the nurses we had Monday were the least competent we’ve ever had. The day nurse gave the vibe of eh whatever. I told her about Jesse’s v-phen. Normally they take it and register it with pharmacy. She just told me it’s a liquid, they just give it back.

But it turned out that we should have let pharmacy see it so they would know. It caused the pharmacist some extra work when told the Tuesday day nurse about it. 

The night nurse was a know it all, who was way more worried about her social life. She had two charges. Jesse and a baby next door. When I came back to the room after the 6:30 to 7:30 you-can’t-be-here-shift change, she had her back to Jesse’s monitor. 

Then she was outside of Jesse’s room belly aching that everyone should could go with to some function was married.

Around 1am, Jesse’s respiratory rate kept dropping to 6 then back to 12. The doctors don’t want it below 10. Do you think that she came to see why Jesse’s monitor kept going off? Or even come talk to me about seeing it on the monitor outside? No. I guess she had other pressing matters.

I kept repositioning Jesse, trying to get her breathe deeper. The oncology resident the next morning mentioned to me first thing that her respiratory rate had been funky durning the night. You would think if the doctor mentions it, the nurse would have at least come talked to me while it was happening.

Turns out the respiratory rate was from too much morphine. She was receiving 0.3, but the decrease it to 0.2. That rate is actually the rate she got it at last time.

Decreasing the rate also helped her finally pee. Morphine has the effect of constricting the bladder. Jesse held it for about 12 hours! I was pleading with her for a couple of hours to pee so we didn’t have to put a tube in. 

I also overheard a NICU nurse who came to visit her friends say she had to do someone else’s patient load because that person was dealing some “Quizzer Parents” I hate myself for not getting up and walking out there to ask exactly what was wrong with that? Maybe this kid is hanging by a thread and the parents want to know what they can do.

Thank God on Tuesday morning we had one of the awesome nurses from last PICU stay. I really like her. She has a clue and is on the ball. She asked me about Jesse’s v-phen, and took it to the pharmacist to get it registered.

Then another nurse came back with it. She told me I would have to give it to Jesse. Ok…. I usually give her all her by mouth medications when we are in. 

When I talked to Mike at noon, he suggested that we switch places. I have some work that needs to be done, plus it would be good for me to spend time with Chris. And it will be good for Mike to be with Jesse. 

We switched off at 5pm. Jesse was asleep, but when I talked to Mike later she was awake and blowing bubbles. Her fever had started, but then was dropping.

The nurse was planning to culture one cap. Of course it was the flake from last night so I haven’t slept real well worrying about whether or not she’ll be careful. But it’s probably a very good thing that Mike is there to handle her.

And interestingly enough he said she was constantly in the room last night and cultured the cap very carefully. ( I called that one. I told FerFer as I was headed home yesterday that if she was on last night she’d probably be very attentive to Mike since it sounded like she was very single.)

When I talked with Mike this morning, Jesse’s temperature reached 102.9 F last night and was on the climb again. But she is in good spirits, happily blowing bubbles.

Jesse and I headed for CHKD at 6:30am. She fell asleep before we got out of Williamsburg. Traffic was really good and we arrived at CHKD by 7:30am.

In clinic Jesse got the chance to play with another little girl fighting leukemia. They had a blast together trying to figure out what they could get into…

Around 9:00am, our nurse put LMX on Jesse’s hand to numb where she would place the peripheral line. Then we went to see our doctor for the day. Instead we got to see the resident who took care of Jesse right after she was diagnosed and her biopsy. Jesse hopped over to him and gave him a high five.

It was his first day in clinic, but it was so good to see him. He had played hide-n-seek with Jesse on the floor back in November, and she hadn’t forgotten.

Once that was complete, we detoured Jesse into a room to get the line placed in her hand. Since the IL-2 goes in on one CVL Line and the Antibody goes in on the other… plus they can’t be mixed, so the IV and morphine had to be sent in through her hand.

Jesse screamed only after she saw the needle in her hand. I don’t think that she even realized that she’d been stuck until she saw it.

Afterwards we came up to the exact same room in the PICU. I hate the PICU. Hate it… but this is where we have to do this (although… I have yet to see her nurse for tonight. And the nurse she had today was dealing with two other children… If this is the case why can’t we take the Harry Bob upstairs and be with the nurses on 8B. I have turned the monitor so I can keep an eye on her heart rate and pulse. Like I really know what I am looking for…)

The nurse in PICU who set Jesse up didn’t give her a long enough tube from her hand to the morphine. I kept having to reposition Jesse to try and keep from yanking that line out. Failed… As we started the IL-2 our nurse in charge of the antibody said, “Why is Jesse bleeding?”

Jesse had pulled the line from her hand. The nurse made the comment that she was going to have to call the vat team. Immediately I looked at her and said, “Do not allow X to come up here. She is not to touch her.”

Luckily the VAT team sent 2 very nice people, who with the help of the LMX easily put the line in Jesse’s other hand.

We didn’t start the IL-2 until 1:30pm… which means we aren’t leaving until that time on Friday. I guess it could be worse. I was just hoping to get home earlier… 

The antibody didn’t hang until 3:45pm… so that will stop at 3:45am. I am a little frustrated with pharmacy today too.  I don’t understand why medicines that are marked for 96 hours wouldn’t be made earliest so that patients could get going.   I am sure they have their reasons, and I am really just taking out my frustration of being trapped in this prison. 

If the nurse doesn’t come take Jesse temperature by 8:30pm… I’m going to do it. I really think the temperature is supposed to be every hour… And I came back in here at 7:35pm, yet to see the nurse…It’s 8:20… Well she just half walked in and then walked away because the child next door really needs a 1-on-1 nurse. And I am not happy that Jesse is being not closely watched… I am really unhappy with this now.

Can I please go to 8B? The nurses up there would be all over making sure that Jesse is ok.

I was driving, and I’m not talented enough to video tape at the same time.

It’s been a tradition with the nurse that we had the very first night on 8B to race wagons.  And last night Jesse was more into it than ever. She kept telling me to go and would throw herself forward to make me go faster.

Afterwords we played hide in seek. I hid behind a nurse and completely messed her up. I might have done better if I hadn’t been laughing so hard.

She dance and sang for our next door neighbor, a little girl with spina bifida and just diagnosed with rhabydsacroma. ( I am totally misspelling that).  The little girl sang and danced too 🙂 

She saw a little baby in another room, and stood in her door waving to her. I think she really wanted the play mat and toys because before she saw the baby she exclaimed, “My mat!”

Around 11pm, my little party animal fell asleep. I figured we’d be up until 3 am since she had a blood transfusion. She is still sleeping now.

Funny story on her: 

There is a nurse here with many freckles. And with the innocence of a child Jesse asked her why she had all those boos boos on her face. I was mortified, but the nurse handled it well. Telling her they were angels’ kisses.

Christine, her big sister, is doing well. She has a hard time when we come in asking when we’ll be a family again. But she has had a blast spending time with her Richmond uncle and aunt. And Maggie is having fun too 🙂

Mike came down last night to see us and bring dinner. He’s lonely at the house by himself. 

I learned this morning that Todd isn’t here anymore. He is one of the male nurses. Just when Jesse misses home and her daddy the most, we get to have one of them. Last night we had the only one left, which was a huge blessing!

Good luck Todd in your new job! Thank you for helping take care of Jesse. You will be missed.

Thank you to all of Jesse’s nurses. We’ve been very blessed to be in their good hands 🙂

We’re back!!! (and I just discovered if I hold the exclamation key, I get the option for this ! or ¡)

So far so good. Jesse is handling the il-2 very well. Last night she wasn’t interested in eating, but it could be worse.

We did suffer a “I wanna go home” melt down. I wanted to cry with her because I want to go home too. I’m over Fred the pole and his lines, which I untangle many times. On a funny note, Fred is getting in touch with his feline side… I’ll post a picture later.

 But all of this is crucial to making sure Jesse doesn’t have to do this again. And the nurses on 8b are fabulous, which makes stays easier. 

The volunteers sometimes frustrate me. The reason is some think this is our first stay, and mention the playroom right in front of her. I’d let her go if we weren’t attached to “Bob” the pulse ox and temperatures were below 37 c. (98.6f). The last thing I want to do is be in the playroom with a fever around other kids getting chemotherapy. And I do understand they mean well. 

Jesse is smart too because she knows every time they come in she can get them to bring her toys. I don’t think she really cares what it is, just wants to see what they will bring…

Her temperature hasn’t been high, about 99. A side effect of il-2 is potential fever. Hives, cough, and increased heart rate are too. When we began the 96 hour infusion, they gave her Benedryl and Tylenol. 

We started at 5:30pm Monday, and won’t finish until late Friday. Plus before Jesse can go home, she needs a blood transfusion… Unless by some miracle her numbers come back up. I would much rather get a transfusion and go home where she run out that increased energy.

Luckily her ANC was 1812, which is in the normal range, and shouldn’t decrease because the il-2 is an immune system booster, specifically t-cells.

Other than that we’re just hang out, I’m working when I can… Mike came to visit yesterday because we though the Sub had a blown seat fuse… He had to take it back with him to a  get a new motor for the seat. At least the seat was adjusted for him to drive. He likes to drive in the sleeping position… I like to drive sitting up. Luckily our leg length is the same…

Jesse keeps wanting me to play Barbies or Jumpin’ Monkeys.  Nurses and Child Life staff have stopped by to visit her, and that has been great. Makes the days go by quicker. And even a nurse from PACU saw us and came down for a visit 🙂

———————
Thank you for the prayers 🙂 And thank you for praying for Emily Hubbel. She has now entered the time of the stem cell rescue that was hardest for Jesse.

Please also pray for 2 more families, who have recently learned their child is fighting neuroblastoma. I met one in clinic who is from Yorktown. He is 5.

Here is a link: http://www.caringbridge.org/visit/Wespak
They are also on FaceBook at Wes’ Fight Against Neuroblastoma

What a crazy one it was… I actually spent the day laughing at myself.

Monday began with Maggie, our dog, barking at the front door. She was letting us know that my brother was here to pick her and Chris up to spend 3 days with them. Where we out of bed? Nope… been hitting the alarm clock since 5:30am and punching Mike to go turn off his 🙂 (He has set up across the room so he’ll get up.. he can sleep through it! But I guess I shouldn’t talk)

I rushed around getting Chris dressed. At least I had the presence of mind to pack Maggie’s bag Sunday, and Mike did Chris’.

We got them out the door in the truck. I walked back in to start getting Jesse ready. I looked at the clock, almost 7. No way would we make it to CHKD in downtown Norfolk from Williamsburg by 8am. I called our nurse and left her a message that we’d be late because I just couldn’t get it together.

As I was talking to the nurse, I looked down in the kitchen at Shiloh’s, my brother and sister-in-law’s dog, bowls. Crap! It had been almost 15 minutes since Robert left our house on his way to Richmond.

I called him. “Hey Bert, I’m looking at Shiloh’s bowls. You’re going to have to come back. Where are you?”

Robert, “Passing the Toano/ West Point exit on 64”

“Rats” (Although I might have said something stronger….)

Robert graciously came back and got the bowls. By this time I had Jesse loaded in the car, and we headed out after them.

Amazingly we arrived at clinic only 10 minutes late. Don’t ask me how that one happened… I have no idea.

At clinic we settled in to begin the wait for a room to open on 8B.  The plan was Jesse to be admitted for IL-2. This is a t-cell booster given in front of and during Round 2 and 4 of the Antibody for 96 hours.

Jesse got the chance to see several of her friends that make the trip to clinic on Monday. We don’t normally see them because we come in on Tuesdays.

Jesse would have been admitted for the IL-2 on 8B this week. The infusion would have lasted 96 hrs, running at 5mls per hour. The doctors and nurses have found that side effects are lessened if they infuse the IL-2 slowly. I’m cool with this because we are on 8B where Jesse can go to the playroom now that we are out of the 100 days and more freedom 🙂

After meeting with the doctor, and her looking at Jesse’s skin… the decision was made to hold off another week. The doctor was also concerned about the increase of calcium in Jesse’s labs. In fact she was debating about putting her on medicine to lower it. And she did mention that our next round of Accutane could not happen with her calcium at that level.

I know that Accutane is vital to Jesse because it is making her cancer cells that can’t be removed mature. Hopefully this will keep them from dividing and growing. But let me tell you… I can’t imagine a teenager on this drug just for acne… Jesse is whiny. Her skin has peeled, turns red easily and quickly, scabbed in places, itches, and her appetite is quashed.

The doctor suggested that cover her in Aquaphor to help her skin. So now we have the greased kid thing going on. Luckily Jesse is a good listener and I don’t have to chase her down. She complains… I tell her she’s a greased pig which makes her smile.

We had to wait until 12:45pm to leave clinic because the research team needed 2 samples of blood from Jesse 4 hours after she took a does of Accutane. She told me why, but I have slam forgot… it was that kind of day.

Right before we had the labs for research drawn, the staff came and sang Jesse happy birthday, gave her a shirt they’d all signed and a balloon. It was very sweet of them to do that for her. I really appreciate it. Jesse seemed confused.  I think that since we celebrated her birthday on Saturday with her dad, she thinks that her birthday had passed.

As Jesse and I made the trip home, I was amazed at how little traffic was on the road for 2pm on a Monday. I kind of wondered if I had missed the memo that Monday was really wacky Wednesday in disguise.

——————

Please for the next few weeks keep the Hubbel family in your prayers. Their daughter, Emily,  has begun the chemo for stem cell rescue/ transplant.  If you’d like to keep up with them, please visit emilyhubbel.com

Wow this week flew by! Yes a strange comment considering we were living in ICU for 4 days. 

Jesse’s 4th day of antibody passed quietly. She did spike a fever, but overall she played some and slept some. 

Her doctor stopped by in blue before she awoke. When Jesse woke up, I told her he’d been by. “Not in red,” was the response. I told her no, she then said “Blue?” And when I confirmed this she was very pleased.

He told me that he was working of filing paperwork with the FDA for her to get the Accutane. This will help mature her tumor cells. The reason the FDA is involved is due to this also being an acne drug.

It is a very powerful drug causing serious birth defects if taken when pregnant. Users have to have blood tests monthly and prove 2 forms of birth control to get it if child bearing age.

Our doctor has to verify that he has counseled us on how to make sure she doesn’t get pregnant before they will give it to her. He also told me that the FDA was planning to pull it from the market until oncologists screamed they needed it too. And the FDA still doesn’t consider Accutane as being used to fight cancer. (He started the conversation with don’t get me started on the FDA… I wasn’t going to ask, but he went there.)

A red shirt teenage volunteer named Andrew stopped by to play. She thought he was great because she could tell him what to do ( he let her get away with that!).

Mike was able to come visit. Jesse stayed awake until he arrived, and then passed out. She woke around 8pm. 

I told her they were moving us upstairs. Bless her heart she tried to stay awake until that happened, but she zonked at 11:30pm.

Around 12:00am, we headed up to 8B for the night or possibly longer. Since she was running a fever, I didn’t want to be to optimistic that we were heading home in the morning. But if I have to be sleeping in CHKD, I’d rather sleep on 8B 🙂

I can’t tell you how great it was to have a bathroom and a window! And to see all our friends. The nurses from 8B really impressed me with coming down to see Jesse when they could during our stay in ICU.  ( The nurses in ICU treated us very well too 🙂  )

Around 2:30am, I zonked in the bed with Jesse. It felt so good to lay down next to her and hear her breath.

At 8, our doctor was in. He told me they would give her rocefrin and send us home. I was surprised. My silly rear forgot to ask what policy was if she ran a fever.

Our nurse offered to change Jesse’s tape. It was so nice to have a break 🙂 She also asked Child life to come by and distract Jesse. They did a great job because she only said “Ow that hurts” at the usual steps of the tape change, removal and cleaning. 

By 11:30am, we were in the car and on our way. I stopped in Suffolk to check my tire pressure because the sensor light was on… Don’t know why.. All was fine.

We were home by 1:00pm. Around 3, Jesse looked a little funny to me. I took her temperature: 99F. This is when the question about fever policy in a kid with a higher ANC crossed my mind. I called our nurse. 

Since she has had the rocefrin, she is good for 24 hours. I am praying that she doesn’t run a fever tomorrow.

At 5:00, it was 99.3F, but her arms and checks felt cool. Craziness.

Mike suggested to the girls that we have dinner outside… It was so nice. We stayed out for about two hours. Jesse really perked up, and they both had a blast swing and driving the gator.

When we came in, she wanted to get in the tub with Chris. This was the first time she has gotten in the tub since before March 28th. I have been sponging her off… I was concerned that when we could go back to baths she balk, but she had a blast. The only part she hated was removing the Aqua Guard that protects her CVL.

Thank you for all the prayers. They have meant so much and are a great comfort. 🙂 

Last night near the end of round 2, Jesse began running a fever.  Fever is freaky on its own… But fever in Jesse with the CVL makes me more nervous.

And even with a fever of 101.5 that little kid played until 11pm. She blew bubbles, painted, and pretended with her Teddy bear.

The night was luckily uneventful. We had to draw a culture to make sure there was no bacteria in her CVL. Our nurse in PICU was fantastic. She happily let me make suggestions of how I like to change her cap. 

The only difference was  I requested she clean  around the place where the blue cap connects to the CVL opening. That step isn’t hospital policy, but they do it in oncology to clean away any bacteria hiding around that joint. It makes me feel better to do that 🙂

Mike called to say that a lightening strike hit so close to the house it knocked our family portrait off the mantle shattering the glass.  As much as I miss Roxie, our German Shepherd,  I’m glad she missed that storm.

Jesse woke around 8am. The first thing she said was “I miss my Sissy!” we called Chris. And this time Chris was the one consoling Jesse. Telling her that she’d see us soon. Before today it has usually been Jesse reassuring Chris.

After talking to her and their little buddy Landan, Jesse asked for a milkshake (strawberry pedisure… She is living off that right now) and to blow bubbles.  The bubbles have been a great help in keeping her respitory rate around 20. She was dipping to 10 on Tuesday.

Then our friend from child life came to visit. They painted until Jesse dumped yellow paint all over herself. Her doctor was examining her at the time.

Poor guy. When he came through the door Jesse told him he had the wrong shirt on and he needs to wear blue. I am really hoping he doesn’t cave to her tomorrow. Our nurse administrating the antibody told me she told him he needed to wear pink tomorrow.

Jesse stayed up until 3:30pm. I noticed that our nurse was also caring for another kid too. I guess they figured since I could help with her and we had nurses from 8b in and out, they could utilize him for two patients. I’m fine with this because I can do a lot for Jesse and don’t mind. Plus I think that her nurse Monday and Tuesday was bored because we are very uneventful. Yes!

Our clinic nurse and one of the chaplains from Williamsburg stopped by to see us. It was great to see them, and I’m sorry they missed Jesse being awake.

Jesse slept until 10pm. She has been up playing with play dough, laughing as she popped my bubbles, and now watching Bubble Guppies. She was even able to talk with our nurse from 8b who came down to take down the antibody.

I think we are throwing our nurse off tonight. And making the poor guy feel useless. He’s not… I just don’t see a reason to bug him when I can take care of it.

Her temp is still high: 100.4 even after the Tylenol. And we have drawn cultures again. The cultures from this morning are still cooking. Initially there are no signs of bacteria. It will take 48 hours to fully determine if she has a bacteria, but it is really good that she didn’t have any initially.

I have adjusted to living in here. The chaplain mentioned the lack of windows, but this will totally make me appreciate when we do have windows. The lack of a toliet and shower is inconvenient, but the nurses are very nice about letting me back in and setting up one of the sleep rooms so I can shower if I wake up in time… Might go do that now…

Much better 🙂 They had me sharing the room with another mother, luckily she wasn’t in there trying to sleep. I wouldn’t have gone because I don’t want to wake her up.

Jesse 6/28/2011

I didn’t sleep Sunday night into Monday night because I was petrified of what could happen. It’s hard not to be when a common side effect of the antibody is severe allergic reaction topped with not knowing how this will make her feel.

Monday we arrived at clinic by 7:30am. I stopped at McDonald’s and got her a chicken biscuit because I was concerned this would be the last time she felt like really eating.

In the PICU, they gave me their list of rules. I am not allowed to eat or drink in here because of OSHA standards. On a level I can understand the food issue especially making patients who can’t eat smell food is cruel.

At 11:45am, the nurse gave Jesse her GMCSF shot to rev up her immune system so the antibody will work better. 

They also began her on continuous morphine. The antibody will cause nerve pain, and they found it’s better to start with morphine than to play catch up. The nurses also gave her Benedryl, Tylenol, and neurontin ( a drug to reduce nerve anxiety)

At 12:45pm, the antibody infusion started. 

By this time the morphine has her very relaxed, and she went to sleep.

Around 3:00pm, she yelled “I’m going to throw up!” I didn’t make it in time to catch it. 

After we cleaned her up, I went up to 8b to do laundry. And Jesse went back to sleep. 

It was so good to see everyone. I wish we could have stayed up there… But I understand they need the respiratory doctors and one-on-one nurse for Jesse during this procedure in case her body rejects the antibody.

At 6:30pm, they made me leave. Luckily Jesse was asleep and didn’t know I was gone for the hour. I had to leave while they did shift change for other patients’ privacy.

When I returned, Jesse’s night nurse was examining her. She told me that days 3 and 4 are going to be worse and I’ll just have to power through. ( that was actually the first thing she said to me… Power through as if I haven’t already).

Turns out that she once worked in DC giving antibody and doing bone marrow transplants, but left to be a civilian nurse with the army in South America.

Around 9pm, she threw up again, and we gave her phenegren. 

Around 10 pm, we had no choice but to catheter Jesse. Before the catheter was even in she peed.

At 10:30pm, she developed a rash on her face and head, but luckily no where else. Within 10 minutes it was gone, but we gave her Benedryl anyway to prevent another reaction.

Around 11pm, the antibody was complete. The nurse told me she would turn off the morphine an hour later.

I passed out sometime afterwords, only to awake to Jesse screaming.

The nurses were trying to insert another catheter because they needed a urine sample. Jesse clamped down so hard she caused the tube to bend and push back out. With all the yelling, her bladder released and she peed in her open diaper before they could insert the catheter.

She slept till 6:30am. And luckily this time they didn’t kick me out! Since we have a glassed in room, I don’t have to leave for shift change, but I can’t leave the room.

Jesse and I painted, called her dad, ate a bite of muffin until she went to sleep at 8:30am.

At 11am, the nurse gave her her GMCSF shot. I tired to wake Jesse, but she wouldn’t budge. And didn’t budge when the shot was administered.

When she woke up around 11:20am, she saw the nurse prepping the Benedryl. Thinking it was her shot, she screamed. I told her she’d already missed that.

She played and drank 3 pedisures falling asleep around 2:30pm.  So far her vitals are looking okay. Her heart rate is up, but that might be IV fluid related. 

Praying for no fever or pain (luckily none yet) and that we can stay at the 10 hour infusion rate versus the 20 hour infusion rate.

Three days and we’ll be back on lock down in the hospital. Three days to figure out food, clothing, and cleaning for us in that PICU space where she won’t have a private bathroom… And we might be lucky if we get a window. I know that the Ronald McDonald house is nearby, but I don’t want to be that far away in case I’m needed. Yeah yeah, freaky parent.

But this is will all get easier as we get used to going in for these 5 rounds. By the fifth round, we’ll have the system figured out 🙂

In preparation for these rounds, Jesse had an MIBG and CT Scan on Wednesday. The doctor for the sedation until looked at me yesterday morning while we were waiting, “When’s her bone marrow scan?” “Tomorrow” “Hmmm, let me see what I can do… We shouldn’t have to sedate her twice.”

I really didn’t expect oncology to have time for the bone marrow scan on Wednesday. I told the doctor if they would great, if not I really appreciated that she tried.

Amazingly they had time! I can’t tell you how much I appreciate her making that call, and the doctors in clinic agreeing to make it happen. It saved her from having to go hungry ( or hangry, which would have been the more likely scenario) two days in a row.

Jesse slept all afternoon… This is never good. At 2am, she was still going strong. (Mike stayed up with her… I was beat from being up at 4:55am)

This morning it was evident she’d stayed up because she had Oscar the Grouch beat.

She and I returned to clinic for labs, urine sample, and to get the shot I’ll be administrating for the next 3 days… Then for 5 or 6 days after we leave PICU.

Our doctor was also able to tell us that her tumor is the same and her bone marrow tested negative for cancer cells. Yeah on the bone marrow. The scans are a little of a bummer because well, who wouldn’t want that thing smaller. Mike asked me if it was still cancer… This is something I’ll need to ask our doctor.

The padding of her diaper must have messed with her head. That child didn’t pee from 8am until 1pm even after having 3 juice boxes! We tried to get her to pee in a hat on the toilet… She tried, but I think that was too freaky for her.

I was so excited she went, but it wasn’t enough 🙁

Our nurse was great and hooked her up to an IV to help her. And finally at 2pm, we got to head out. She apologized for not doing that sooner, but how could we have know that Jesse would attempt to imitate a camel!

Traffic was horrid on our way back. As we cruised up towards the Lee Hall exit traffic started braking. I was in the left lane so I could see an upside down car with smoke rising ( might have been steam… But I don’t know). Others were stopping to help who ever was in the car. I can’t tell you how scared I was that a child was in there. Funny how my mind went to that thought.

I couldn’t just drive by… I figured that if there was something I could do it had to be done.

A tractor trailer truck driver blocked the road… To help protect the car and everyone from further injury. Smart guy!

That man was so lucky from what I could physically see. And looking back, the people probably shouldn’t have tried to pull him from the car, but it looked like it might catch fire… So I can totally understand the rational.

I only saw a cut to his forehead. The guys pulled him from the back seat and he was able to walk away from the car. I don’t know if he was thrown there… But he was so lucky. I gave the people my first aid kit, and then since I had Jesse’s medicine that needed refrigeration and her in the car, I headed on.

There was a fire department person stopping as I left. I really hope he is going to be ok.

It is so important to be patient and not to follow to closely when driving. Having to make that trip from Williamsburg to Norfolk makes me so aware of that. And I am amazed by how many people stopped to help and work together.

I hate the start of these new sections of treatment… mainly because I don’t know how Jesse will react to the drugs they are giving her. One of the side effects (all be it a rare one) is sudden death. Yippee Skippy.

This morning Jesse and I will head to clinic to get her consented to be part of a study on the antibody. Then a stop for EKG and Echo-gram. Next week we’ll have the bone marrow, MIBG, and CT Scan.

Our doctor gave me the consent to read ahead of time. I hate the wording of these things. It’s “our choice” that Jesse participates. Some choice we really have in all this. If we don’t do the antibody, we get to live with the guilt of having not tried it and her dying. And then the whole section on you will not be compensated and you or your insurance will have to pay what we won’t cover aggravates me too.  I’m so glad that everyone is making a stinking profit off of my 2 year old daughter’s fight to live.  I have also been downloading EOBs this morning from our insurance company. CHKD has tried to charge over $1000 a day that we did radiation… Interestingly our insurance has only agreed to pay $150-300 of any of it.  And that doesn’t include the anesthesiologist… They bill separately.

It’s just so frustrating on so many levels.

And then to read the side effects… it really makes me want to run screaming in the opposite direction. Well off to clinic we go…