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.
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!
Having a kid with cancer is for the birds.
Jesse has been complaining about pain behind her knee since Tuesday. Normally we’d chalk it up to growling pains and move on… Normally.
Instead we go with that first while wondering in the back of our minds… Oh crap we are off treatment, please just let it be a growing pain.
Then yesterday and today she said her stomach hurt, and she has become very very picky on what she will eat. In fact she ate no lunch today.
Normally we’d go with potty training, fear of #2, and trying to control it. But in the back of our minds is the nagging question of is she constipated again like she was before she was diagnosed. So I slipped her some Miralax.
Then she told me she was tired and wanted to take a nap. This is a child that doesn’t nap. My anxiety level climbed through the roof.
I debated calling her doctor, but felt that he would say let’s wait to see her scans later in April. And I completely understand. He would probably tell me to give her Miralax and see if that improves her stomach.
She did finally relieve her stomach pain this afternoon, but quite frankly my nerves are shot. I guess with time all of this will be easier to deal with.
I have also made her some tea, hoping that by getting her to drink more the leg pain will stop. I had been trying to switch her to water, but she doesn’t drink enough I feel. ( She still pees at least 7 times a day.)
Their dad will be home from work soon, and I am going for a run.
Friday morning Jesse got a really huge treat. She was invited by her doctor to help with a St Baldrick’s head shave on the Hampton Roads show.
Chris goes bald for St. Baldrick’s: wavy.com
Then I took Jesse back home to Williamsburg, and took off to run the Towne Bank 8k in Va Beach as part of the Shamrock Marathon.
What a blast
Jesse had a great time hanging out with her dad and sister back home. They “camped out” in the living room until 9:30 when Jesse asked to go to bed.
Enjoy the video. We are really thankfully that Jesse was invited to participate.
Is the first thing that the urologist said to me as she walked in the room after keeping Jesse and I waiting an hour and half. By the end of our 30 minutes with her I felt the same as the day Jesse was diagnosed.
Our day started great. Jesse and I were invited to make a spot for 92-9 the Wave’s CHKD radiothon on June 1st. Jesse enjoyed visiting with the receptionist, who was a very sweet grandmother of 4 boys. In the studio Jesse refused to talk on the microphone. She really just wanted to hold it.
We left The Wave and headed for Jesse’s ultrasound at CHKD. Jesse did great. She laid there patiently while the technician ran the probe over her stomach and back. I could see the ultrasound screen and the enlarged left kidney.
After the ultrasound, Jesse and I grabbed some lunch. Then head up to urology a half hour early. At 1pm, a nurse took us back. Jesse was weighed: 13.3kg! (over 29lbs).
Then we began waiting. On the door was a sign stating the doctor would not see you if you were on your phone or texting. My reply to this is then cut your patient’s wait times down. Not like we don’t have work or other things we need to do.
When the urologist finally came in, she started by telling me that Jesse’s condition was bad. Then she began harping on prognosis. We have never been given a prognosis. How can you predict the future anyway? And in Jesse’s case, what would I do differently? If a doctor told me that she was going to die no matter what, I will still do everything that I have already done and more.
“Does she have any back pain or constipation?” Which honestly Jesse doesn’t. I have only had her complain about her back once. She has complained about her stomach, but that is after she has held her number 2 too long, and remedied after she goes to the bathroom.
Then she started in on why we didn’t have more of the tumor removed. I explained to her that Mike and I did a list of pros and cons, and felt the cons were too risky. She looked at me in disbelief.
Her next stop on the “happy” train was to carry on about why we hadn’t seen her before. Jesse’s left kidney was the factor tipping us off to her having cancer. Then she says to me after I explain all this, “Well them not sending you to see me tells me they were more concerned about the cancer.” Well yes. It’s cancer Stage 3.
After all this she gives me our options. We can either stick a tube out of Jesse’s back with a bag or place a stint up her bladder through the urter.
I asked her at this point how she felt about those options. Her reply was to tell me it wasn’t hers to feel about.
Ok, let me rephrase: “What would you do if this was your child?”
I hit a nerve with that question without meaning to. I asked the question as a parent looking to an expert for advice. She took it as I thought she didn’t understand where I was coming from.
She proceeds to tell me that her husband is dying from a neurologically disorder that doctors can’t diagnosis and she knows how I feel. I am really sorry that her husband is dying, but I didn’t ask that question to get her to sympathize with me. I asked to get her expert opinion.
Then she tells me that she loves her husband, but loves her son more and would do the stint. Even though her husband would rather they wait until it got so bad he needed the tube out the back.
I would rather do the stint anyway. Having the tube going out of her body opens her up for infection more than having a stint inside her body.
She did tell me that Jesse’s left kidney is a Grade 4 swell (the highest) and functioning at 30%. Normally the kidney should be operating at 50%.
Her right kidney is operating at 70% and has a Grade 1 swell (the next to lowest grade).
She also read me the results of the kidney flow test Jesse had done February 10. Basically the left kidney didn’t empty without the help of lasiks.
Then she discussed that Jesse’s stint will be good only for 10 to 12 weeks. At that point it will be removed or replaced. All I could think was great now every 10 to 12 weeks she has to undergo surgery.
She then left the room to get paper work. While she was gone, I had a question pop in my head about whether Jesse could swim. When I asked the nurse and she asked the doctor, the doctor acted like the biggest inconvenience.
Needless to say, I was pretty unhappy and upset when I left the urologist. I was so upset that I went and found Jesse’s oncology doctor, who the urologist ran through the ringer because she wasn’t included sooner.
God Bless our oncology doctor. Jesse was not on his schedule, but he took time to come out and talk with me about what the urologist said. I really appreciate him taking the time to talk with me, and to tell me that he research more information about the stints.
I think what is most painful today is the reminder that this is cancer and Jesse will never be free of it’s grasp. And it reiterates that research is vitally important because Jesse falls into the 62% of childhood cancer fighters who will develop other medical problems.
And with that I will be shaving my head again from childhood cancer research. There has to be a true cure out there. Click here to see my page on St Baldrick’s or to be a hero for conquering childhood cancer too