Touring the Country Through Children’s Hospitals

 

Mount Rushmore

In January when we were seeing a certain specialty doctor at Children’s Hospital Colorado, I mentioned the trip we had just returned home from the month before. I mentioned how we drove the very long way to see my mom, how we went to Mount Rushmore, how two of my sons went to different renowned doctors in the Twin Cities, how Vince received his chemotherapy at CHOP (Children’s Hospital of Philadelphia) while we were at my mom’s house, etc.

“We have a beautiful country and it’s great to see,” Doctor said, “but you have to stop touring the country through children’s hospitals.” She explained to me that she has another patient who has a very rare medical problem and that mother goes to a new children’s hospital in a new area of the country “at least every year”. Doctor thought is was always great to get a second opinion, but that if we were on vacation, we should simply have fun. “Stop touring the country through children’s hospitals,” was her conclusion.

I had never thought of it that way, that we were touring the country through children’s hospitals, but she was right. While seeing my beloved mother in New Jersey was a great part of the trip, the main reason for the trip was to visit these very renowned doctors and get their expert opinions. Vince’s neurooncologist said the neurooncologist at CHOP was the “top guy” in the country for Vince’s particular combinations. I had read some very promising things about the neurooncologist in Minneapolis and the orthopedic doctor (for my oldest son’s extremely rare bone deformity in his leg) in St. Paul. That, combined with the fact that our insurance (through my husband’s employer) provides a slight reimbursement for traveling far for Vince’s treatment/ second opinions through their Pediatric Cancer Centers of Excellence Program meant Road Trip.

We had an excellent trip, all things considered. I got some great answers in Minnesota. Vince is now on the treatment proposed by the Minneapolis neurooncologist and we are making plans for my oldest son to have surgery on his leg (in a way that they don’t do in Colorado) in St. Paul. My wonderful friend came with us for one leg of the trip and watched my other children in Minnesota while we went to the doctors. My sister flew to Chicago and helped us drive from Chicago to New Jersey. We were able to spend a long time with my wonderful mother and my son was able to keep up on his chemo treatments at CHOP. Kevin flew to Cleveland- I met him along the way and he helped us drive from Cleveland to our house in Colorado. Yes, it was a crazy trip. Yes, I had my six children seven and under with me. Yes, I saw parts of the country that I had never seen before. But the most important thing is that I learned some very valuable insights about my sons’ health conditions that will hopefully lead them to overcome them.

Minnesota!

Minnesota!

I will do it again, even this year as we make plans for leg surgery 1900 or 1000 miles away. I told you that I will go to the ends of the earth for my babies, or at least the ends of the country.

So, yes, I toured the country through children’s hospitals. Guilty as charged.

Philadelphia!

 

 


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The Milestones We Never Wanted

Having children is all about milestones. There are milestones for baby…
When Baby rolls over.
When Baby sits up.
When Baby eats solids.
When Baby crawls. 
When Baby stands. 
When Baby walks.

The Milestones continue into the preschool years…
When He can count.
When He can say his ABCs.
When He knows his sounds.
When He learns to read.
When He can write.

There are religious milestones, too, like when He says his prayers, or Receives His First Holy Communion.

There are big-boy milestones, too, like when he gets his drivers license or graduates high school.

Milestones are a huge part of growing up- they really are.

Today is three years since Vince had his first brain surgery.

A few weeks ago, this picture popped into my facebook newsfeed. Apparently it had been one year since Vince had surgery to have his port inserted. A milestone for sure.

He’s eating crackers after he has awoken from his port surgery.

With Vince and his brain tumor battle, he has tons of milestones we never asked for. Who ever wants a port and who wants to have one for a whole year (and counting)?

When Vince was an infant or when I was pregnant with him, my husband and I anticipated his milestones. We wondered when he would walk. We wondered when he would talk. We thought about his future. Would Vince follow in his father’s, grandfather’s and great-grandfather’s footsteps and be a Lincoln County farmer? Would he get married and make me a grandmother? Would he become a priest? Never, never, never did we think he would have brain tumor. Never, never, never, did we think he would have all of the milestones that go with it, like a port, chemo, experimental medicine, MRIs, speech, PT and OT to overcome his residual effects. I never even knew what a port was.

These are just a fraction of all of his beads. Each bead represents a different piece of his brain tumor battle, a milestone, for example, when he has his port accessed.

Vince’s brain tumor battle has brought many more milestones with it, milestones we never asked for, milestones that were never even on our radar.


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The Phone Call

Hello.
Hello, is this Mrs. ___?
Yes.
This is Sally Smith. I’m a nurse in the neuro-oncology department at Children’s Hospital Colorado. Your son had an MRI today.
Yes, he did.
Well, this isn’t really easy for me to say, but your son has a brain tumor.
I know he has brain tumor. He had an MRI to see what that little lump was at the base of his skull.
No, he has a brain tumor. In his left frontal lobe.
Yes, he has a little lump at the base of his skull. That’s why he had the MRI.
Yes, but the MRI found a brain tumor.
So, the brain tumor is a separate thing?
Yes, the brain tumor has nothing to do with the little lump. We made you an appointment. You need to bring your son in tomorrow at 10 am. He will see Dr.Neuro-oncologist and Dr.Neurosurgeon, see them both.
What?
The brain tumor is a separate thing.
What? Are you saying he has a brain tumor? A brain tumor?
Yes. Your son has a brain tumor. (pause) It’s probably a low grade one. If it was a really bad brain tumor, we wouldn’t have even let you leave the hospital. (pause) So you need to bring him in tomorrow at 10 am to see Dr. Neuro-oncologist and Dr. Neurosurgeon. We were able to get them both to come to the appointment.

Even though I remember much of this conversation, I don’t remember the rest of it.

I was home alone with the kids. That morning, Vince had an MRI to investigate what the lump was at the base of his skull. The other children had slept at their grandparents’ house the night before. We went early in the morning to Children’s Hospital Colorado to take Vince to his MRI. We came back as soon as we could. We met Kevin’s parents and the children at the Turkey Crossing Cafe. We had a nice meal and went home. Kevin then went to his parents’ house to do some farm stuff. And that’s when I got the phone call, the phone call that changed everything, everything ever.

I managed to somehow call Kevin and tell him I needed him to come home immediately.

I remember that day, January 2, 2014 to be exact.
I remember that phone call.
And I always will.


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An Open Letter To the Lady Who Sat Near Us at Children’s Hospital

Dear Grandma,

Remember me? You, your daughter and grandchild sat at the next table from us in the Children’s Hospital cafeteria last week. My almost three year old son had a temper tantrum. It was because he didn’t want to share his pizza and yet didn’t want to eat it, although the real reason was that he was overtired.
He was screaming. I was ignoring his temper tantrum. You turned to me and said “Can you do something about your child?”
I turned to you and I explained, “He’s throwing a fit.” Did I need more of an explanation?
“We’re trying to eat here,” you explained. “Will you please do something about your child?”
I did not reply. I didn’t feel the need to point out how a cafeteria in a place that has a sign outside that says “Children’s Hospital” is probably not an ideal place to have a quiet lunch, especially after you choose a seat next to our big family. You honestly shocked me so much that I didn’t even say anything else. I didn’t know how to reply to you without using bad words at that specific moment, so I said nothing. I did pack up the children, four of them with me at the time, and moved ourselves mid-lunch to outside, lest we disturb you some more. Outside, my son quieted down and then threw another tantrum over something new. A CHCO staff member walked by us and offered support- she told me I was doing a great job.
I noticed that your baby grandchild was in a car seat in a Children’s Hospital wagon hooked up to some gizmos. While I don’t know what those gizmos were for, I can tell you that whatever your grandchild’s illness is that the doctors here at Children’s Hospital Colorado are all top-notch. They are doing the best for your grandchild and doing the best they can. I hope that your grandchild has a speedy recovery. How scary this all must be for your infant grandchild to need to go to Children’s Hospital! I am so glad that you are there to support your grandchild and your daughter. They both need you. It is beautiful that you are able to be there to offer support.
I’ll also assume that since your grandchild is an infant, you are new to this whole sick-kid thing. As an experienced sick-kid-mom, I wanted to take time to explain some things to you that you may not be aware of. Our children are fighting a war against their illness. As their mom or grandmother, we are in the trenches with them. Our love for our child binds us there. Our job is to fight with our children, fight for our children and to be their Mollie Pitchers. Since we’re all in those trenches together, we have the same camaraderie as soldiers at war. We would never attack each other verbally. You violated a major war rule today. There are enough attacks from the enemy- our child’s illness. We all support each other, even if its just a kind word, a nod or a smile. We are on the same side.
My family has been coming to Children’s Hospital for a while. Our encounter was the first time that I have ever heard an unkind word from another parent or grandparent or even anyone. As a matter of fact, I usually get compliments on my children’s behavior, and my temper tantrum throwing child was an anomaly. I invite you to ask my son’s nurses or doctors or the speech lady or the lady in the daycare room or anyone else about my children’s behavior. They will tell you. Thursday my almost-three year old was very tired. His brother’s illness is hard on him, too. He schlepps with us everywhere. He witnesses our stresses in this battle. His brother was diagnosed originally when my almost-three year old was four months old, so having a sick brother is all he knows.
Can I point out the ratios? You, your daughter and infant grandchild had a 2:1 ratio of adults to children. I had only four of my children with me at the time, so our adult to children ratio was 1:4. How about the next time you see such a discrepancy, you offer to help? Just a suggestion.
Grandma, you and I apparently have different parenting styles. I ignore temper tantrums. I’m not saying that your parenting or grandparenting style is wrong, I am just saying that it is different. I support parental rights and I believe that you should have the right to discipline your child or grandchild as you see fit (of course as long as it’s not abusive) even if it’s different than my parenting style.
BeforeMRI

Here is Vince before that MRI, not long before we met.

You had no way of knowing this at the time, but my son Vince was in his MRI, actually under sedation in the MRI machine at that very moment that you asked me to “do something” about his brother. Vince is a brain tumor patient and I cannot remember the last time he had a “good MRI”. Actually I do- it was right before I became pregnant with my last baby. We had an all-clear, although it was short-lived. My baby is 16 months old now. How many “bad MRIs” can my son have? I wish I knew. My other missing child was at speech therapy since she goes to speech therapy while her brother gets chemo.
We did get the results yesterday afternoon and my son’s tumor did not change in these last two months, thanks for asking. Chemo first works by slowing the tumor growth, then stopping the growth, then shrinking the tumor. His tumor was unchanged. It’s actually a victory, even though I shudder to think that no-growth/no-shrinkage is a victory. It is still a long slow healing, but this is a good first step. So I guess I’d call this a “good MRI”, finally.
I am sorry that we are in the same sick-child club, the club no one wants to be in. But we are here. We must fight our child’s illness and not each other. Will you remember that during your next trip to Children’s Hospital? We are a band of brothers, not enemies with each other. Your grandchild is in the best hands at Children’s Hospital Colorado. I hope that the gizmos and the illness are all short-lived, that your grand baby is healed quickly and that you can get on with life, without having to do this battle. But if you do go back to Children’s Hospital and if you ever need anything, do let me know. I am right here in the trench with you. Don’t ever forget that.
Sincerely,
A mom of a child who threw temper tantrum

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The People You See In the Hall

These are my children walking down one of the halls in Children’s Hospital Colorado this past April. You can see Vince’s IV bag on the wagon.

During our many trips to Children’s Hospital Colorado, I have bumped many people in the hall. Some of us had lengthy discussions, some we have just seen or see all the time and some we have just seen once or twice. (I have changed all the names here.)

There’s Sally, the teenager. Every time I see her, she looks worse and worse, weaker and weaker. She comes by herself and meets her father at CHCO after he comes straight from work, leaving early. I have no idea what type of cancer she has and if it is her disease or the treatment that weakens her, but I think of her often and cannot imagine what it must be like to go through that as a young lady.

There was John and his father. John is also a teenager. He was there for his first annual MRI and checkup. He had had a brain tumor, had a few surgeries, had been on and off of chemo for a total of 8 years. He was clear and was down to annual MRIs for the first time. John’s father said the doctors had told him John wouldn’t make it, and I’m so grateful that he is still with us. John had a stroke from one of the surgeries and still walks with a limp and has limited use of his non-dominant hand. But he is still with us and smiling. What a nice young man. It was so nice to see John on the other side of treatment.

There was the lady and her teenage son Ernie who had down syndrome and leukemia. Ernie’s treatment required hospital admission during the week. For months and months. Twice. Ernie’s half-sister had to go stay with her otherwise absent father because she was not allowed in the in-patient areas. Ernie’s mother was a single mom and somehow held it all together. I haven’t seen them in a while and I pray that it’s because Ernie has recovered. Or moved. I don’t want to think of any other possibilities.

There was Stacy and her mom. Stacy was a teenager and had just started chemo and had to receive it six days per week for three weeks. She had long dark straight beautiful hair past her butt. I’m scared to think what happened to it.

There was Suzy, the single mom whose son Peter had only spent one day outside of a hospital ever in his whole life. He was 18 months old and coded out multiple times per night sometimes. She had already lost a child years before.

There was Harry, the four year old boy who was playing with my kids but could not even turn his head because his tumor was so big sticking out on his neck. He did not let that stop him from pedaling a tricycle through the oncology floor.

There was the little boy in the elevator yesterday who had just had brain surgery a month before. He reminded me of Vince. He was about the same age as Vince when Vince had his second surgery (four) and had the same scar, in the same place, just on the other side. He even had the same hair color as Vince.

There’s the lady who takes her born-premature infant twins there a few times a week for follow-ups to their issues. My kids play with her other child in the daycare room.

There are the parents I see with tears in their eyes in the halls, trying to hide it.

There are the happy patients. There are the miserable patients.

I see people leaving the hospital with suitcases, stuffed animals and helium balloons.

I see families with an entourage of support in the form of aunts and uncles grandparents, cousins and what-not. I have seen twenty people in the PICU waiting room for just one child. The parents were in the PICU with the child and the other relatives would rotate in and out.

I see parents by themselves.  I see single moms, single dads. I cannot imagine this. This is hard enough and I have Kevin’s support.

I hear children scream and cry. They are in an infusion room with the curtains closed tight. Their chemo is painful to them and they scream the whole time.

I see small families. I see big families.

Kevin’s even seen a former inmate, he thinks, and it did not hit him who the guy was until after we’d left.

I see people who don’t speak English and have a medical translator translate what the doctors and nurses are saying to them so they can understand what is happening to their child.

I see all kinds of races and backgrounds.

I see all kinds of religions. Everyone from those who look literally like Marilyn Manson to Mennonites, to those in full hijabs, to… everyone.

I see all kinds of classes. There are those who have old beat up cars and those who have new Lexuses. There are those parents who come straight from work and are wearing a suit and tie and those who have a fast food uniform on. If you want to see everyone getting together, not caring about class, race or teeth, look to Children’s Hospital- they help everyone. And just the reverse is true, too- cancer is also non-discriminatory.

The doctors and nurses are the generals.
We are all soldiers. The kids are soldiers. The parents are soldiers and Molly Pitchers. We offer each other a kind word, a quick conversation, sometimes only just a smile. Not one of us is there because we want to be, but we are. We love our children. We are fighting with them.  We are bonded with each other, like no other camaraderie I have ever known in this war we don’t want to be in. We are bonded by our love for our children. And we fight…


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Another Fourth of July

It was in June of 2015 that we learned that Vince’s brain tumor had grown back again. Vince would need another tumor resection surgery and perhaps chemotherapy. They were unsure about his prognosis. We made plans for a second brain surgery.

Last Fourth of July (2015), as I was driving the children to the fireworks in the local town (to meet my husband there after he got off work) it hit me: what if this was Vince’s last Fourth of July? Independence Day was the first holiday since that diagnosis, and it hit me, hit me hard- this mama had a break down that night.

Well you know the rest:
He had the brain tumor removed.
It grew back again.
He started chemo in March, and now chemo is our new normal.

Vince is surviving and thriving.
Yeah, his tumor did get bigger between the last two MRIs in spite of starting chemo.
Yeah, they moved up his next MRI a month sooner to keep a closer eye on it.
Yeah, they may change up his chemo depending on the next MRI results.
Yeah, this tumor could be a lifelong battle for him.
Yeah, he could be on chemo for years.

We don’t know what his future brings.

But yesterday, Vince celebrated another Fourth of July. And this is a victory.

I rejoiced in celebrating the Fourth of July- not just because it’s our country’s birthday, but because it was one more Fourth of July that I can celebrate with Vince!

Vince cannot wait to celebrate Fourth of July 2017- he’s already talking about more fireworks.

Happy Fourth of July- 2016!

Happy Fourth of July- 2016!


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Chemo

My son Vince, who is 4 and half as of this writing, has been fighting a brain tumor for the last two years.  He is now receiving chemo weekly from Children’s Hospital.
Many of you have asked me some questions, so I’m going to attempt to answer the most common questions here.
What is the history of his brain tumor?
Vince has a pilomyxoid astrocytoma in his left frontal lobe.  We discovered it during an MRI (January 2014) for something else (a little lump thing at the base of his neck). His first tumor was the size of a golf ball. He exhibited no brain tumor symptoms at the time.  If it wasn’t for the MRI, we wouldn’t have known about it.
His first tumor was resected in March 2014.  The surgery was a success. They got the whole thing.  They sent it off for analyzing and it was a pilomyxoid astrocytoma.
The tumor grew back again and was resected the second time in July 2015.  It was the size of a grape and was still a pilomxyoid astrocytoma.
The tumor grew back again.  Since it grew back twice after surgery, we’re trying chemotherapy.
How did the tumor grow back twice if both surgeries were successful?
If even one cell was left, the tumor could grow back from that.
Is it cancerous?
Well, it depends on who you ask.
The World Health Organization considers all brain tumors cancer.  Physicians in the United States do not. Brain Tumors are “graded” on a scale of 1 to 4.  A pilomyxoid astrocytoma is a grade two. United States physicians only consider grades three and four cancer.
If it’s not cancer, why is he getting chemo?
He is getting chemo to kill this tumor.  Chemo will still kill it in theory.  Without treatment, he could die from this brain tumor.
What is his prognosis?
They are saying it is good, but they also said it wouldn’t grow back.  It’s all very scary.
What is his exact chemo regiment?
He is getting carboplatin, a milder chemo, once per week.  He goes four weeks on, two weeks off. Each “four weeks on, two weeks off” is called a “round”. They say for a year, but it could be more or less depending on his MRIs.
How do you know it’s working?
We don’t.  He’ll have a new MRI approximately every three months, after every other round.  His next MRI is in May.
If he’s getting chemo, why does he still have hair?
The particular type and dosage of chemo (carboplatin) that he has does not cause severe hair loss.  They said it would thin his hair, but we haven’t noticed it thinning yet.
What is chemo made from?  What is it like?
Vince’s chemo is made from platinum.  It’s clear, like IV fluids.  He gets it through his port.
What is a port?
A port is a long term IV (implanted surgically) that’s in his chest.  They take his blood and give him his chemo through the port.
What care is involved in the port?
Now that the incision is healed, we only have to watch for a fever.  If he has a fever of 101 or over, he has to go to the hospital to get fluids and tests for infections.  This happened once, before his first chemo treatment. He did not need to be admitted at that time.
What do they call it when he goes for chemo?
Every chemo treatment is called an infusion.
How does the chemo affect Vince?
Vince gets nauseous.  He’s thrown up from it.  We have zofran, an anti-nausea medication to lessen his ill feelings.
He has had a day on the couch all day, just feeling sick.  He has also had times where he was out playing the next day.
He sometimes gets pains in his legs, behind his knees.
My second-cousin-twice-removed’s former college roommate had cancer and beat it with eye-of-noot/ raw honey/ essential oils/ going vegan/ going paleo/ smoking a joint, etc. Why don’t you____ and skip the chemo?
We have tried a few “alternative” things.  They haven’t worked.  The tumor is back.  We need to kill it.  I would not not treat it with chemo and have my son die because we did something unproven.  I feel like we are past the point of trying these “alternative” things.  We already did a few. They didn’t work.  We just can’t fool around anymore.
Denver is no New York. Why don’t you take him to a better hospital in another city?
Children’s Hospital Colorado’s neuro-oncology is within the top ten in the nation.  We have also consulted long distance with another top ten hospital in another city.  Treatment in Colorado is the best for us as far as the impact on our family.  The treatment itself isn’t any different.
How far is Children’s Hospital from your house?
101 miles.  There are no local resources.
You have children that you homeschool. How do you do that and take Vince to chemo?
We reworked our schedule and chemo is part of our new normal.

 

 

This was Vince's last infusion. He was receiving his chemo and drinking juice.

This was Vince’s last infusion. He was receiving his chemo and drinking juice.


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