Today was the retry of Jesse’s 6 month scans. Yesterday she and I traveled to CHKD to have the IV line inserted in her hand and the MIBG radioactive isotope put in her body. The isotope takes some time to really get into the tumor as they want. The reason we do the MIBG isotope is because neuroblastoma puts off a hormone that the isotope makes light up when the MIBG camera is used.

We arrived at 11am to have the line inserted. Jesse’s clinic nurse did excellent as always. And Jesse only screamed as the line was going in, and then moved on to being excited about the pink and purple wrap that was put around it to protect the line.

She and I went down to the cafeteria, where she had fried shrimp for the first time. I figure if she is going to have an allergic reaction to it, what better place to try it. She loved the shrimp, and pitched a fit when I sampled one…

Afterwards we went over to Nuke Med, had the isotope injected through the IV, and headed home.

Jesse was so excited about going back today… that it was well after 11pm before she went to sleep.

This morning we headed out at 7:15am. We dropped Christine off with our neighbor, who we really appreciate… especially since she ended up keeping Chris 11 hours today.

After that we were off to Day Surgery at CHKD to check in and wait for 11am. Due to having to be put to sleep, Jesse couldn’t have anything to eat or drink. She is so used to this that she never asked to eat. She played and amused herself until it was time to ride the stretcher down to Nuke Med.

It amazes me every time we go and friends at CHKD know we are there, they take the time to stop in and say hello. It really means a lot. 🙂

Mike was able to go with us this time, and he held Jesse until she fell asleep (she insisted on sitting up, cross legged until her eyes started popping from the ketamine). It is always so hard for him to see her have to be put to sleep, but he does a great job of not letting her see him cry.

We left Jesse to have her scans and wait for her to awake in PACU. By 1:30pm, I was getting nervous because we hadn’t heard anything. At almost 2pm, we were finally called back to PACU. Jesse was slowly waking up, but then again she got a lot of ketamine and propofol… and I figured it might be a long wake up when the anesthesiologist commented on how long it took her to fall asleep… and that she was used to the drugs.

By 2:30pm, we headed out and down to see her oncologist. Jesse was awake, and her speech was a little less slurred, but she was in no means able to walk by herself. The best way to describe it is watching someone who has had way too much to drink… and I mean way.

We met with her doctor, who told us her scans unofficially showed no changes (he did mention that the MIBG showed less uptake, which is a good thing… but the radiologist needs to read it). Her CT scan showed no change either.

He is very pleased with how well Jesse looks and her weight gain (finally over 31 pounds!!). He discontinued her bactrium and cyproheptadine (peractin generic to increase appetite). We are so excited that Jesse won’t have to take those medicines anymore, but scared too because the bactrium is to protect her kidney that is still enlarged. Her doctor did ask we make an appointment with the nephrologist, which is my fault. I thought they would call me. The oncology department spoils me with calling to give appointment times.

Jesse also “graduated” from her clinic nurse today. I am actually very bummed about this. She has been so good to us. The good news is she will put Jesse’s IVs in when we have scans, and we can still visit her. But for Jesse this graduation is great because she is healthy at 6 months off treatment.

She also can start getting re-immunized, and we can set that up with her pediatrician here in Williamsburg. I know that I am excited, but I don’t think that Jesse will be when the time comes 🙁

After we left clinic, we headed for home. I made the mistake of giving Jesse a pen… She proceeded to draw her “bones” on her legs. Then we messed up and gave her gum, which she proceeded to wrap around her feet. I was a little frustrated by this point, but Mike pointed out that she might not be quite with it yet.

And due to the nap she took in PACU, she stayed awake till 11:30pm. I need to find her a night job…

This week is Jesse’s scan time. I delayed making any mention of it because my brother is taking his huge pharmaceutical boards on the same day as Jesse’s scans, and I didn’t want him to be thinking about Jesse when he needs to concentrate on his test.

But due to a strange fluke, her scans have now been delayed to an unknown time.

Jesse and I headed out for CHKD yesterday morning to get her IV placed in her arm for blood draws, the MIBG radioactive isotope, and anesthesia. The plan was to take her blood when the IV was inserted, then go downstairs to radiology at 1pm for the isotope to be put in through the IV. And afterwards have an ultrasound of her kidneys.  Then today we would have returned at 7am to get anesthesia and have the over an hour long MIBG scan.

In the oncology clinic, Jesse’s line went into her hand easily. She barely cried, and needless to say I am very proud of her for being so brave. She was excited to get the hand wrap with the purple hearts.

Afterwards we headed down to get the isotope. Luckily the technician asked if I’d given Jesse her SSKI drops to protect her thyroid. And I had totally forgotten! I even had the reminder in my phone, and had forgotten! The technician was able to order some for us to pick up. And we decided while we waited for the pharmacy to fill it to do the ultrasound.

While she was working out the details with the ultrasound technician, the radiologist came in. He was very concerned that a set of MIBG scans he just looked at where not as clear as they should be.  He asked our technician contact the engineer. They asked us to check with them after the ultrasound because they might have the camera fixed then.

Jesse and I stepped next door, and had the ultrasound done. Jesse complained bitterly that it was uncomfortable on her stomach. I am wondering if she didn’t like the gel they use because she complained when I put sunscreen on her stomach today.

The technician spent a lot of time looking at her left kidney, and even started to act a little funny. To me with an extremely untrained eye, the kidney looked the same. I told her that we knew the left kidney was enlarged. My knowing that seem to make her feel better.

We then went back to the MIBG room, where they told us they didn’t know when it would be fixed. So they had to cancel her MIBG. We asked if we could at least do the CT Scan, but the radiologist wanted to do that with anesthesia because the contrast can give the kids a funny feeling. And that feeling can cause them to wriggle on the table messing up the CT Scan, which is a one shot only deal.

Jesse was extremely upset by all of this, and I don’t blame her. However,  I would feel beyond guilty if we pushed for the scan with a broken camera, and missed a newly forming tumor or growth. And I am glad we found this before we put the radioactive isotope in her because I would have been more upset that she was exposed to that for no reason.

I explained to Jesse that we had to go back upstairs to remove the line from her hand. She became really upset. “I don’t wanna take the tubies out! I want to take them home!” As the nurse, who did a great job putting it in was taking it out, Jesse started crying, “But I don’t wanna take a shower tonight! I don’t wanna go to swim lessons tomorrow!”

When I told her that I wouldn’t make her take a shower she calmed down. And luckily this morning she changed her mind about swim lessons, and was amazing in class!

With the IV out, Jesse and I headed home to wait for news of when the scans would be rescheduled.

I did hear from her nurse this morning. Jesse’s blood work looks outstanding! Hemoglobin was 12.5, platelets 298, and ANC over 1900.  The ultrasound shows no change in her kidneys.

Funny how things work out… Now I have a better chance to remember getting her SSKI drops in her before the scan 🙂

 

Yes I have been delinquent in posting. I have been super busy with work and the family.

On Friday, Jesse and Chris got a special treat to go camping with friends overnight. Mike and I joined them for dinner, swimming, and dancing.

Mike and I didn’t really think that Jesse would stay when we left. Boy were we wrong. She actually wasn’t happy when we came to pick her up the following morning.

The girls had such a good time that we joined them again for dinner on Saturday night. Other friends were staying in the campground too, and we joined them to roast hot dogs and marshmallows. We had such a blast that Mike and I decided to get a camper.  The girls have had to live a bit in a bubble for the last year and half because we feared Jesse getting sicker.

On Sunday we made a big mistake. We went to Dixie RV in Newport News to look at trailers. All of us were extremely excited and let our emotions rule our heads. We put a deposit on one contingent with a credit check. Mike also wanted one that his truck could comfortable pull it as well.

On Monday he checked with our dealer and found out that his truck could haul it, but we would only be able to carry 200lbs more of luggage and people. And to top it off if we had water in the tanks, it would be too much for us to be comfortable with.

He called Dixie RV and asked them to cancel because we weren’t comfortable with that weight on his truck. At first they were very nice saying they would return our deposit. Then the sales lady called us. Instead of offering to help us find a trailer that Mike could use his truck with comfortably, she got crappy. Telling him that my suburban was listed as the primary vehicle and they would not refund the $500 deposit.

Mike lost his temper and did say some words he shouldn’t have. But called them and apologized. He then drove there to get a copy of the contract we signed saying that we wouldn’t get the $500 back. Then the finance lady retracted the statement about my suburban being the primary vehicle. She offered to allow us to buy another trailer from the lot and we could use the $500 towards that, which incidentally “they never allow anyone to do that.”

Interestingly enough the contract does say that if our credit was bad we’d get the $500 back… and they never ran the credit check so they really don’t know what our credit is like…but in all honesty we should have read the contract and not let the excitement of giving our girls the chance to live outside the bubble…

Needless to say we are all really upset by this incident. One for being stupid and signing something like that and two for them not being ethical. I don’t write this post for anyone to pity us, because this was our stupidity. I write this post as a warning.

I also have learned in the last few days that the starter kit of hoses that they charge $199 for, is really about a $40 value. And other places include it… I find that really interesting. Believe me I have no intention of ever doing business with them. Fool me once shame on you, fool me twice shame on me.

 

Hi everyone!

We haven’t been up to much lately. Actually we have been boring 🙂

On Sunday, I woke Jesse up for church at 7:45am. Then we went to breakfast, then swimming, and then to a picnic. Child never took a nap. Her sister had to have one, and was still tired at the picnic.  We put the girls to bed at 8pm. Chris was out, Jesse was still awake at ten….

Our other exciting news is that Jesse has been excepted to Bright Beginnings for preschool. I know Mike will tear up when the girls get on the bus, but I’ll be dancing because they are growing up and heading in the right direction 🙂

We are working on planning our St. Baldrick’s event. If you can help or would like to participate through volunteering or sponsoring, please let me know. We’d love the help 🙂

What a crazy few weeks we have had! In April, Ferfer called a friend in the Colonial Road Runners. They had an opening for a 5k Grand Prix race and need directors. She and I became co-directors with less than a month to pull the race together. We did it with a lot of help from our wonderful sponsors, family, and friends.And thank you to all the racers that came out, 1 milers and 5kers. We greatly appreciate your participation!

Half of race participants money goes to St. Baldrick’s and counts towards Team Jesse Grace’s head shaves.  Click Here to see our team members 🙂

We will have pictures from the race in the next few days. Thank you Gressit Photography for taking pictures! I have two here that I took. Click Here to see results 🙂 At Jesse’s Facebook page, we have some pictures of the kids: http://www.facebook.com/wannabebellied

 

 

In this picture, our racers are waiting for the Go!

 

 

 

 

 

 

 

 

 

 

And here they are off and running 🙂

 

 

 

 

 

 

 

 

We were really lucky to be invited on WVEC 13 to promote the 5k.

Here is the video below:

Today Jesse and I meet with the nephrologist at CHKD. I had psyched myself out for a visit on par with urology. Luck for me I was wrong :). And as Mike just said, “It shows the importance of getting a second opinion when your gut is giving you a bad feeling.”

We arrived at 1:30pm on the 5th floor which is the surgery doctors office floor of CHKD. This is also the same floor as urology. But when I tried to check in at the overall surgery check in, they waved me onto the Kidney Center, saying that they do their own registration. My first thought was this could be interesting.

The lady behind the window got us registered, and we began the molding process. I know doctors have lots of patients to see and we all take varying degrees of time, but after awhile of waiting with a 3 year old… well it gets frustrating. (Actually it’s frustrating on any level because we all lead busy lives).

We were taken back around 2:30pm (hour after the appointment time), and Jesse was weighed. 13.6kg, woo-hoo!! And exactly 3 feet tall!

At 3pm, we met with the doctor. I really, really like her. She told me that the kidneys don’t work 50-50 as urology had said. Instead one side on a healthy person might function at 60% and the other side 40%. She also told me that Jesse hasn’t lost any kidney function, one side does 30% (the left) and the other side does 70%.

She did say the size was impressive in the first scan, but looked better in the latest ultrasound.

And she explained the flow test, Jesse had on February 10. The test was watching to see if it took her left kidney longer than 20 minutes to empty. Her kidney emptied in 15 minutes, meaning there was no obstruction.

I told her about the urologist wanting to put stents in. She looked at me in shock. “That is a temporary fix that in the end might do more damage than good.”

She did have questions about if we were doing to make scans look better or to make sure she still had flow. I told her my main goal is to keep Jesse from being in pain. I also explained that currently Jesse takes bactruim on Friday, Saturday, and Sunday to keep infection from getting into that kidney. And right now she isn’t in any discomfort.

Her recommendation is to take Jesse’s scans to a group of pediatric nephrologists in Richmond. She meets with them once a month to discuss cases. I am so glad that she has this group to talk with. It makes me feel like she is getting a second opinion too.  She also might have Jesse on bactruim longer, due to little girls like to hold their urine. Her comment about little boys was hilarious. “Their ureters are longer and there are trees outside for them.”

She also has requested that Jesse have ultrasounds of the kidneys. I asked her if we could coordinate with her other scans, and she happily agreed.

I am so glad we saw her. I really feel good about her, and that she really has Jesse’s best interest at heart.

The scaniexty is starting to really set in. Tomorrow Jesse and I will go for her audiology test. Cisplatin, a chemo drug she had  during treatment, can cause hearing loss. We have been lucky so far even with her being diagnosed  last week with another ear infection.

Thursday is the big day.  MIBG scan to see where neuroblastoma is putting off it’s hormone and CT scan.

Friday back to CHKD to meet with her doctor.

But we do have exciting news! Colonial Road Runners have allowed Jesse’s godmother and I to co-direct a 5k in their grand prix series!! The race will be May 12, 2012. Proceeds will go to St. Baldrick’s and a portion to Colonial Road Runners because they are helping us (we greatly greatly appreciate it). For more information, click here!

This past week with Jesse has been an up and down roller coaster. By Wednesday, we had not had a successful number 2 since Friday. This was making her dad and I very nervous.  One of Jesse’s symptoms prior to diagnosis was constipation. I had been giving her Miralax since Sunday, and having not gone by Wednesday I was a little concerned.

By Wednesday afternoon, Jesse was obviously not feeling good because everything was wrong. I told her it was time to exorcise the “demons.”  I know it sounds awful but being yelled at for everything and demanded to be held all the time, takes a toll.

Jesse realized from my tone that she had pushed my last button, and when we stopped at the store, all she said was “I’m sorry mommy.”

We got her a suppository, and that instantly fixed the problem. Immediately Jesse felt better, and life has returned to as normal as we are ever going to be.

This morning we took Jesse to church. After the first hymn, she clapped and asked if it was time to go to breakfast (I gave her a banana before we left home.). During the rest of the service we tried to get her to whisper when she spoke, but no go. She tried to get us to let her go give people a hug. This was her little trick to see if we’d let her get down so she could run free.  After communion she took to banging the communion cups together. During children’s church the minister tried to trick them both, but Christine was paying attention. She told him that he was April Fooling.

Her dad and I did tear up watching the girls walk up to sit with the minister during children’s church. This time last year Jesse was receiving the last dose of high powered chemo and 4 days from her stem cell transplant, which was the hardest part of treatment for her. Today we get to celebrate by eating at Chili’s and raising money to help with cancer research. I thank God for letting me keep her.

The more Mike and I talked about the urologist and how my meeting with her went, the more uncomfortable I was with all of it. Every 10 to 12 weeks under anesthesia to remove and replace the stent made me very nervous.

I decided to call her oncologist to see what his opinion is. He had received a letter from the urologist telling him that the stent would need to be replaced every 8 to 10 weeks. I was dumbfounded at the time frame of the stent lasting she gave Jesse’s oncologist.

Jesse’s oncologist suggested talking with the surgeon at St Judes about removing the piece of tumor that is around her ureter. He isn’t optimistic they will say yes because the tumor has been radiated. Not only that, but her ureter would stand a good chance of being cut. And if that is cut, the kidney will have to be removed (is the way it sounded, but I could have misunderstood… I am exhausted from worrying this weekend… more on that in a bit).

What I don’t understand is why in an age where we can replace hearts we can’t build a new ureter or replace it if cut?

Our other option is to see what a urologist in Richmond will tell us. I am pushing for MCV (my brother works in the pharmacy there).

So right now, I will be canceling her surgery with the urologist and waiting to see what Jesse’s oncologist says.

I asked Jesse’s oncologist if we messed up by not having any of the tumor removed. He said we thought it out really well and made the best decision based on risk vs benefit. It’s still hard not to feel guilty. When I told Mike what our options are, I know he was in tears when we hung up. I don’t know if it was from fear for Jesse or feeling guilty that we didn’t have any of it removed. I just know this bites.

I also talked with her doctor about kidney function. He told me he was ecstatic she’d only lost 20% kidney function. He has seen times where kidney function was reduced to nothing. Plus that poor kidney has been hit with chemo, radiation, stem cell transplant, retinol-a, and antibodies. In his mind only loosing 20% is pretty good.

The other thing I talked with him about was Jesse’s leg cramps, throwing up Friday night, and disinterest in eating Thursday and Friday. The cramps are probably due to her not drinking enough or her kidney not filtering correctly.

Her throwing up might be due to the bacterium. The pharmacy gave her a different color bacterium. We thought maybe the strength had been inadvertently changed. Mike took the bacterium over to the pharmacy to make sure. The strength was correct, but they had changed her to cherry from grape. Mike asked them to change her back to grape. Since the change, she hasn’t thrown up.

Today Jesse has eaten breakfast and snack. She is playing well and seems to feel a little better. But in the worrying of the weekend, I forgot to get Easter eggs and treats for Chris’ class. I am sure that this is not going to be good when Chris gets home. She already feels left out sometimes because of the worrying we do over Jesse.

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April 1st Chili’s in Williamsburg helps conquer childhood cancer. Bring in the flyer above and 15% of your meal will be donated to help fight childhood cancer through St Baldrick’s, the #1 private funder of childhood cancer research in the USA.

They have funded several research studies at CHKD, and I feel this is a great way to tell her doctors thank you. Plus I asked CHKD how I could raise funds for the oncologists, and they suggested St Baldrick’s.

If you can’t make it, please consider donating to the link above. $1 will go a long away to helping researchers find ways to stop and cure cancer. Thank you!