Saturday, March 19 was an extremely exciting day for both of my girls.  Jesse stayed awake till 3 am ( Yeah red blood cells… better than any overly caffeinated drink out there)

Chris awoke shortly after I did. And yes I did the flight of the bumble bee house halfway house cleaning routine. Because of leaving in the dark and returning in the dark Friday, I didn’t get a chance to clean as I would have. Luckily Mike cut the grass. Didn’t have time to weed the front (of course Mike always tells me Round Up does the trick… )

We actually didn’t wake Jesse up until the limo from Premier Limos was in the front yard. The rest of the RocSolid Foundation/ Play It Forward crew were already outside getting set up. She actually wanted to wear a dress. I don’t know where these 2 kids came from… I always refused to wear dresses as a child…

Mike went out to speak with Eric and John. I think that he was curious about how it was going to look 😉

A little after 8am, the guys came in. Eric and John asked Jesse where she would like to go for breakfast.  Her response was Chick-fil-a, but we should have been taping her because her tone was duh what did you think.

When we stepped out to get in the limo, Chris was blown away!

We met Glenn, the driver/owner of Premier Limos and his son, Caleb.  They are absolutely wonderful people. And I am very impressed that an 8 year old would get up early on a Saturday morning to come meet us with his dad.

Eric and Glenn were able to join us for breakfast. I really enjoyed getting a chance to talk with them. I wish the other volunteers had had a chance to come with us. I really didn’t get a chance to meet them all 🙁 But I understand that they were on an important mission.

After breakfast, Eric returned to our house to finish the build. We asked Glenn if it would be ok to pick up my aunt, mom, first cousin, and her daughter to ride with us to Harley Davidson in Williamsburg and Yorktown.

When we arrived at the hotel where they were staying,  Allison was amazed by the limo. The girls really enjoyed riding together in the back. I learned that was the first time mom had ridden in a limo (It was my first time too, but then again my second cousin made the news and Jay Leno for seeing Big Foot in North Carolina in 2010).  And I had to giggle when she talked with my brother James telling him that she was going to a Harley Davidson store.  My mother isn’t overly thrilled that I have a motorcycle license. For her to be excited about going to a Harley Davidson store is amazing.

We first stopped at Revolutionary Harley Davidson to see a friend of Mike’s. She was really excited to see Jesse. We traveled to Hampton Roads Harley Davidson from there. I really appreciate that Glenn was willing to drive us around.

At Hampton Roads Harley Davidson, there were a ton of people there for their blood drive! Donna, the manager, introduced Jesse to everyone there over the speaker system. She had a blast walking around.

While we were there 2 fathers spoke to us about their children and success fighting cancer. One’s son fought it 33 years ago!

I was amazed by the cars in the neighborhood when we pulled back in! Even News Channel 3 and Channel 13 were there!

The girls were so excited to get out of the car. We meet the wonderful people of WePromise Foundation, who funded the build of Jesse’s playground. But Chris and Jesse couldn’t contain themselves, and took of running to the backyard. Mike (my husband) heard John from RocSolid say, “Yes! She’s running!” I really hope that tenacious spirit cares her through the darkest days of chemo, radiation, and antibody therapy.

In the backyard, there it stood! 3 stories tall with a rock wall, picnic table, slide, swings, steering wheel, and telescope! First thing Jesse wanted to do was swing. Then they asked her to go down the slide. From that point on things became a totally whirlwind for me. I was interviewed 3 times…

By the time I turned around from the interviews, most all the volunteers were gone. I did get a chance to speak with the several of the board members from We Promise. They also got the girls a gift on top of the playground! Jesse loves her Dora and Chris loves her Hungry Hippos.

Thank you everyone that helped with Jesse’s playground. I really appreciate that you would take the time to do something for us. God Bless you all.

I have included the news videos from that day (when I can, I’ll add our limo video)

 

I didn’t sleep well the night before because I was worrying about Jesse’s bone marrow biopsy and how much she might hurt after the procedure ( yeah I’m good at needless worrying… really I am)

We rolled out of here at 5:45am to be at clinic by 8:15am… I was there by 7… And that is with traffic being insane. But that is Hampton Roads… and traffic will always be insane… and this country bumpkin is just going to have to get used to it. (Where I grew up, just got a stop light about 3 or 4 years ago I think. And traffic is a line of cars behind a combine or an amazed tourist on Route 5 😉 )

When we arrived at clinic this huge cockroach was hauling tail towards Jesse.  She freaked because she thought it was a spider. The nurses quickly took care of it. I have a little squishing bug problem… I would rather catch it and release them outside… not really practically… but it’s just one of my many little issues… Ticks, mosquitoes, and may flies are the only bugs I don’t feel guilty about killing.

After Jesse calmed down, she begin to make the “I’m hungry” mumbles. Followed with a “Nooo!” when I would tell her we had to wait for the doctor to say it was ok. ( I hadn’t eaten either. I always feel guilty eating when she can’t… another little issue)

We went through the standard prep at clinic. Getting 4 tubes of blood drawn and heprining (might not be a real word) the line where blood was drawn. Jesse is really good at knowing the order of the tubes ( all I know is red is first), sticking them in to draw the blood, shaking them, placing them in the bag, adding paperwork, and helping the nurse send them through the large tube system. It amazes me what that kid picks up on.

At 10:30, the anesthesiologist arrived to give her the knock out drugs for her bone marrow biopsy. Since Mike and I decided to include in a research study on neuroblastoma, they  needed 2 samples. I asked the doctor if he wanted me to stay or leave the room during the procedure. I wanted to stay just to see how it was done, but I didn’t want to make him uncomfortable. He looked at me a little funny… so I decided it might be best if I just waited outside the room. Last thing I want to do is make him nervous.

In order for him to get the bone marrow sample, the doctor takes a needle and sticks it through her hip bones and into the marrow within.  In the hips is where blood cells are made, and it is very important to know how healthy she is there.

They finished taking both samples in 20 minutes. The doctor told me he was very surprised at the density of her hip bones. He really had to push the needle in to get the sample. And they had to really give her some drugs because she would not stay asleep.

Jesse didn’t cry, but she fought the anesthesia with all she had. She kept opening her eyes… looking around… moving her mouth. Anything to stay awake. She fought it for 45 minutes, before I convenience her it is ok to take a little nap.  I know it’s awful to say, but I had to giggle at her. And her eyes kept bouncing in time to the pulse ox machine because of the anesthesia they used.

She woke after an hour. She was pretty hungry and wanted a hot dog. In hind site that wasn’t the best choice because it all came back up. As she was eating, a nurse came by and asked her about Bob. So now we have a name for the pulse ox machine: Bob.  I hope that will make having that machine easier in case we need it during our next visit.

Around 1:30pm, her red blood cells arrived. Jesse’s hemoglobin count was at 7.8. The doctor and I had discussed about whether to give them on Friday or the following Tuesday. Once he listened to her heart and heard a small murmur, he decided that it might be good to give them that day. And why not. We were already there for a long time anyway… might as well.

As the red blood got in her body and running around, Jesse perked up and was all over the clinic. Red blood usually does this to her. By a little after 5pm, the red blood transfusion was complete, and we head home.

Amazing the only time Jesse complained about the bone marrow biopsy site was when I removed the tape yesterday afternoon. She ran, played, and acted like she never had the biopsy at all.

Yesterday Jesse and I made the trip to CHKD to check her levels and start her testing for the high dose chemo/ stem cell transplant.

I knew she needed platelets because she was bruising really easily… and where the doctors inserted the pic line for her stem cell harvest bruise reappeared.

Her platelets were 6! But her ANC was 10,000. Yeah she gets a neupogen shot break! I love those. I really don’t enjoy giving her that shot. I know it’s extremely important, but there is no easy way to explain to a 2 year old that it is vitial.

Our first stop of the morning was radiology/ nuke med to begin the GFR Kidney Function test. They were not able to insert the nuclear medicine in her CVL because it would skew the results of the test when they drew blood from that site.

So they had to poke her. I asked them not to dig ( I think that makes things worse). The nurse attempted on her hand, but it was a no go. I thought it would be considering she had very little platelets… When this didn’t work, they used her elbow crook. Then the medicine was injected. Removed this line, and began the waiting process. To complete the tests, they needed 3 blood draws 2 hours after the injection, 3 hours after injection, and 4 hours after injection.

While we waited Jesse played in clinic, threw up once, and got platelets.

After the GFR was completed, we went to Cardiology for her EEG/EKG. She actually fell asleep!

Friday we head back for the doctors to get bone marrow. Praying that goes well. At least they are going to sedate her.

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Tomorrow , March 17 2011, join us at La Tolteca to support Team Iversen for St Baldrick’s. La Tolteca will donate part of the money you pay for dinner to St Baldrick’s. This will happen all day at both locations.

Please help make this event a huge success towards conquering childhood cancer!

Having to decide about putting Jesse through surgery was not easy. Mike and my main objective was to completely agree with each other. When I talked with Uncle Jim, he suggested sitting down and writing out the pros and cons. This was an invaluable idea.

Here is the list

Pros	Cons
Remove some of the tumor	Could die on the operating table
Lessen the chance of tumor rejuvenating	Could cut a blood vessel
	13 hours of surgery
	2 days at least in ICU on a ventilator
	Weaken her body when facing high dose chemo
	Painful recovery
	The size of the incision
	Open her body only to decide they can’t get anything
	Not get the 1 cell that is the cell that will rejuvenate

This list helped Mike and I completely agree that we couldn’t do this to Jesse. If she was acting poorly, they could get all of it, or she absolutely had to have this for survival, we could justify the surgery. But Jesse’s MYCN gene is not amplified, she is still acting like she feels good most days, they can’t remove all of it, and her tumor has shrunk by 50%.  Maybe, just maybe with the help of the other treatments… her body will reabsorb it.

So our next stop on the journey is for the high dose of chemo and stem cell transplant.

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Please help support childhood cancer research. To sound like the guy who promotes for feeding kids in poverty stricken countries… $1 will help a doctor/ researcher find a piece of the puzzle. This piece add with all the others could lead to conquering cancer. Or save another child/ family from going through this nightmare.

Please visit St Baldrick’s event in Williamsburg, Va for more information about how you can donate or help.

Thank you!

On 4:30 Wednesday afternoon our phone rings. It’s Jesse’s doctor asking if we can move her appointment to Thursday instead of Friday. At first I figured that he had a meeting come up on Friday, and our nurse said no way am I calling people and rescheduling them. Then he went on to tell us that he had heard back from St Jude’s, and a surgeon there thinks he can potentially remove 90% of the tumor. My stomach sinks at first. We’ve been hearing for so long that it can’t come out because of the risk in accidentally cutting the aorta and other blood vessels.

I agree to be there along with Mike at 8:45am.

Wednesday night we discuss what surgery could possibly mean ( of course we really don’t know because we aren’t doctors) and what going to St Jude’s could mean. It’s exciting and scary that the surgeon there thinks he can potentially remove that much of the tumor. Would radiation or the anitbody therapy be more effective if the tumor was at least a little removed? What happens if a blood vessel is cut? Could they save her life if they did that or would she die right there on the table?

Thursday morning, Mike and I get up, dress Jesse, and head for our meeting and labs (supposed to be there Friday for labs, they’ll just do them a day early.).

Our doctor sits down with us and explains that he received an email back from the surgeon at St Jude’s saying that he thinks he can remove some of the tumor. He tells us the risks. If she undergoes the surgery it will be at least 13 hours long. She will spend at least two days in ICU on a ventilator. Thinking about Jesse being like that is hard to swallow. The incision to get into remove the tumor will be huge, larger than what she has now.

He also tells us that hind sight is 20/20 in this case. Jesse falls into a small group of neuroblastoma kids – 2-3%… and there is not a lot of data on these kids when comes to surgery. She falls into this end of the High Risk category because her MYCN gene isn’t amplified, but her cells are undetermined. Our doctor tells us that he would suggest the surgery if Jesse’s MYCN was amplified because there is potential for it to return ( there is that word again potential… ).

If Jesse were in the intermediate group, he would not suggest surgery because they often don’t for intermediate kids. But Jesse falls in between these 2 categories… so there is no right or wrong answer. He also tells us that he will be comfortable with whatever decision we make.

Mike and I are floored( I don’t even think that is the word to really describe how we feel, but how do you describe having to make such a decision?).

There are so many what ifs… and questions that will arise from the what if’s

What if we do the surgery and she dies?

What if we don’t do the surgery and it returns?

What if we do the surgery and the radiation and antibody therapy remove the rest (not likely, but not being a doctor… it’s hard for that thought not to materialize)? Our doctor pointed out that the radiation and antibodies will get where they need to go no matter the amount of tissue.

What if we don’t do the surgery and her body absorbs it all anyway?

What if we put her through surgery, she survives only to have a life threatening set back during recovery?

What if when we do the high dose chemo, it causes catastrophic heart damage, ear damage, brain damage…?

What if she gets sick during the high dose chemo with pneumonia or RSV, and can’t overcome it? ( we have to do the high dose chemo anyway… it’s just hard not to think about these things since I am on a tangent)

What if the surgery weakens her body to where the high dose chemo is deadly? ( I know they would probably wait a period of time, but how do they know she is really ready to be subjected to this?)

Is it really worth subjecting her to such pain for a really unknown gain?

Whatever decision we make will we be able to live with it even though we know we should put it in God’s hands (Yes I know this… I am trying to… but it is very hard when this is my baby who I want to live a long full life )?

What damage will the chemo, radiation, antibody therapy cause to surface in her little body years from now?

Will she have to end up having surgery anyway?

Would it have been better to do it now instead of after radiation when the tumor is a scarred up mess?

What damage will the scar tissue from surgery cause her organs or growth in the future?

As our doctor put it: Surgery risks are immediate… right there in your face. In Jesse’s case, the chemo side effects have been throwing up and hair loss, but she is still running around playing, so it’s hard to see the risks that are there. The drugs she has had and the drugs she still faces are all toxic… that’s why they work on cancer.

He does have good news for us. The tumor has shrunk by 50%. This is really important. To be in the antibody therapy study, her tumor must have shrunk by a percentage ( I forgot to ask what that percentage was)

This also complicates the decision to do surgery because if she hadn’t met the percentage, then surgery would be a no brainer in order get her into the study.

Mike and I have a lot of praying, discussing, and pro/con list making to do. Earlier today we had talked about going to meet with the surgeon at St Jude’s to see what he thought and hear first hand from him how he would do the surgery. But tonight as we talk, he might tell us exactly what our doctor has. And there is no way to guarantee that even though his surgery doing the exact same thing was successful last week, that it will be for Jesse. We have a lot to decide… but the really important things is that we are on the same page about it.

They are so glad were home. Hehe! No really they are. It’s fun to mess with them about going out, but have no fear Roxi will get even with me in the middle of the night!

During Round 5 in early February, Jesse and I decided to play with the video camera. We give you a little tour of her room at CHKD, and us cutting up. TV is only so entertaining to a 2 year old 🙂

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Please help us in the fight against cancer. Because of the love and support we have received, we want to help with research so that no one else has to go through cancer. Please visit out St. Baldricks Event Page

Jesse’s tumor plus some of her medicines make going number 2 without Miralax exciting.  We have relied very heavily on Miralax to help.

 

 

If you would like to help us in finding a cure, please visit our St Baldricks’ Event

This morning Jesse and I made the trip to CHKD to find out if she would have surgery or start round 6 of chemo.

Part of me wanted her to have surgery to get that evil thing out. The other half didn’t want to put her through that trauma again. Even though Mike said he didn’t want her to have surgery, he feels the same as me.

Her doctor told me that we are starting round 6 of chemo. Surgery is out because the tumor is still wrapped around her vena cava and aorta. Trying to surgically remove that would be far dangerous than her living with it. And I do realize that even surgically removing it does not mean she is cancer free. I think that is the hardest part: Jesse will never be cancer free. She will always be in remission. But that doesn’t mean I don’t have to stop praying that she will be cancer free.

We talked about the remainder of her treatment. The doctor pointed out that she wasn’t even a third of the way through treatment, though they don’t expect the tumor to shrink any more than it already has.

In December is was 10.1 x 2.8 x 5.9. Today it is 10.4 (this is a placement error from how she was laid on the table) x 2.4 x 5.3 cm

They will work to make the cells mature so that she can have a chance at life. That is the hardest part… a chance at life. There is no definite guarantee that this won’t come back.  But being alive normally is a risk anyway… you never know what tomorrow will bring.

On the bright side her left kidney that was badly misshapen in November looks like a kidney should.

So right now she is on 72 hours of duxorubin, 2 days of 6 hours of cytoxin, and .2ml of vincristine.

Today Jesse and I made the early trip to CHKD for her CT Scan.  We left here at 5am (yeah! no really I mean that… traffic through both tunnels is sooooo much better.)

We arrived at CHKD by 6:15 am for her 6:30 am appointment. She slept through all of admitting, and woke up when we got back to the Sedation Unit. Around 7:15am, they had all the paper work completed. The doctor came in and asked why she needed sedation. The doctor was very nice and Jesse for some strange reason being pretty calm. I didn’t tell her that I thought Jesse might bolt. And the doctor told me that next time we should really try a CT Scan without sedation. Works for me if she’ll hold still.

Jesse walked back to the CT Scan room with the doughnut scan machine. When she saw the machine she started whining, but I told her that it was like going through the tunnels to get to CHKD.  I stuck my hand through the machine and told her it just was going to take a picture. Jess accepted this and asked to lay on the table. She was very comfortable on the table.

The sedation nurse gave her the fast acting sedative, and in a few minutes Jesse was acting like she’d been at the bar and reached her limit. She was looking for me, but with the way her eyes were flicking I wonder if she really saw me.

She was done in about 15 minutes, and we left Radiology at 7:30am to go upstairs for a levels check.

Her levels ended up being 25,000 for her ANC ( that’s a little on the high side and might be causing her to have some bone and joint discomfort… but she has not said anything… just seems a little slower). Our doctor asked us to stop giving her the neupogen shot. Yeah! I actually gave it to myself the other day when I was trying to give it to her.

Her doctor was laughing about how Jesse was very loving, but she would zone out for a few seconds every now and then. The only thing I can figure is the sedative caused it.

The CT Scan wasn’t ready this morning. In addition to her oncology doctor looking at it and the radiologist, a panel of surgeons will be looking at it to see what they can do surgically, if anything. It’ll probably Tuesday before we know whether or not Jesse is having surgery. I am actually praying that the CT Scan shows the chemo was super effective. I am also praying that the machine was working correctly too.

We left at around 11am and Jesse slept most of the way home.

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If you are here in Williamsburg ( or nearby) don’t miss the chocolate chariot race in New Town at 11am on February 26, 2011! Come out and cheer our chariot on 🙂