Tag Archives: brain cancer

With Childlike Faith – Fighting Childhood Cancer

Standard

My daughter has such heart. She has a joy and just the positive spirit that she takes with her everywhere! This little girl has a smile that will light up any room. Her no-nonsense and innocent look at life is heartwarming beyond words. Children, especially those fighting big battles, just have a different perspective than anyone else alive does.

With all this said, I’d like to fill you in on some of the details of our recent history.

As you may have heard by now, our little Janet’s cancer is back, and things don’t look good in a lot of areas. First, I am going to share all that with you – then I am going to tell you were we stand on everything about to be mentioned.

We all knew that it was a possibility that her cancer could one day come back. No one, and I mean no one thought it would so soon. Dealing with a recurrent / metastatic cancer is not good. Learning that she will endure cranio spinal radiation for over a month (every weekday) is also not fun. The follow on treatment will be an outpatient chemo therapy regimen.

Let me explain her treatment plan. For four and a half weeks, Janet will undergo radiation therapy. This time, there will be mostly proton beam radiation, with “normal” radiation a few times. There are said to be normally more side effects with this because a different type of radiation, as well as a larger part of her being treated. The goal of hre radiation is to shrink and make disappear the tumors… also to preferably kill their opportunity to every even possibly return.

After radiation, the protocol is that she will go through an outpatient chemo therapy regimen. This will include daily (Monday through Friday) outpatient chemo. One week. Then, she’ll have approximately 2-3 weeks off, and then do the same thing again. Aside from that, every two weeks, she’ll have a one hour outpatient chemo administered – separate from the others. As I have learned, this chemo therapy regimen is more aimed as being palliative support, or a quality of life kind of thing – as versus curative.

If you’re like 99.99% of everyone else reading this, you may be wondering about alternative protocols or treatment options. You may have suggestions on where else we can seek treatment on behalf of our little Janet. I want you to know, we have gotten multiple second opinions – from the nations leading hospitals and have involved the nation (I’d say even the world’s) top medical minds in this situation, and in her care – simply because her tumor / cancer IS one of a kind. Nothing like it exists in the world. I spoke with another hospital again today, and heard the exact same news as all others have said – St. Louis Children’s Hospital has her with a protocol they’re comfortable with, would recommend themselves, and has state of the art equipment. There are other alternative therapies that we are also looking into, just to ensure we do all that we can to help our little princess do her best.

The entire point I am making is that we have faith and confidence in Janet’s medical team here at Children’s. Never did we doubt them. We sought second opinions just to ensure everyone was on the same page. We do NOT like the page everyone is on, but there is a certain amount of peace knowing that the medical minds agree – as to both what we’re looking at, as well as treatment options, etc.

Now, with all that said, I want you to know that we have not given up – and we will not EVER give up. In fact, we KNOW without even the shadow of a doubt that our God is greater than ANY cancer, any tumor, or any issue Janet faces. Regardless of what the situation looks like, we KNOW that God IS in control. His hands are clearly seen in just about every aspect of this journey. That’s not to say that Him being in control makes it any easier to deal with — but it does make it easier to walk through. We don’t LIKE the situation Janet is in right now, but we do trust God 100% with her situation, and her very life. All of our lives. Her life, and her battle with cancer is part of a bigger story – one bigger than her, than us, or than anyone can imagine. I have that faith. What exactly that means, I do not know. However, I do know that I am grateful to have the strength that comes from the living God we trust. I do not know what tomorrow will bring, but I refuse to allow the fear (like I’ve said before) to rob and steal the joy from today.

For those of you inclined to pray, know that your thoughts and prayers are valued.

Learning To Love The Lemonade

Standard

Have you heard the age-old saying “When life gives you lemons, make lemonade” or have you been fortunate enough to not hear that comment at every turn – especially when life isn’t so awesome!? Don’t get me wrong. I believe this statement is a good thing to remember – to look at the bright side, and not always dwell on the “lemons” that life hurls towards you.

I’d like to share somewhat of a life update, and give you a very practical update on how you can enjoy the tasty lemonade, even in the middle of sour lemons!

For those unaware of our family situation, my daughter has battled a rare and aggressive brain cancer. She had a brain tumor that was surgically removed, and then followed through with six weeks of daily radiation. After the completion of radiation, she underwent a high dose chemo therapy regimen. We’re ecstatic to say that our five year old daughter has completed treatment. At the end of treatment, her MRI/scans showed no evidence of the disease. She was deemed “cancer free” and we celebrate! We have scans coming up in two weeks to verify that she remains cancer free, and no recurrence.

Watching my child fight cancer has been the single most difficult thing I have ever walked through. As such, I have also learned to CHOOSE to see the good in things…to see a bright side in a dark room. So, let me share a little story with you.

As a “cancer kid,” my daughter was connected with Make A Wish. She was given the opportunity to make a wish. She could dream big. Her wish, like so many other little kiddos, was to go to Disney World, and to get the opportunity to meet the “real” princesses. We actually just went out of town last week for Janet’s wish trip. We did not post openly, or share online until our return. We were not trying to hide anything, but rather security conscious. We opted to not share openly so our house wasn’t a target for those who would seek to do harm. We are back now, and updates – we have plenty! This post, in fact, will be a summary of how things, even amazing things like a wish trip, can sometimes not go as planned — and how you can make a conscious decisions to make the lemonade instead of sulking and drowning in the sorrows of what could have been.

I would like to take you back to the day we left. That day started off magically. Our family was picked up and escorted to the airport in a limo! The awe of it all was precious to watch. The amazement in the children’s eyes was priceless. As we were whisked away, we just enjoyed the moment. We were all together as a family, and were at the beginning of what was pegged to be a magical vacation. As we got to the airport, but before boarding the plane, we noticed a small rash on one of our son’s wrists. Nothing big, but we kept an eye on it. We thought perhaps there was a couple of bug bites. That’s all it looked like. By the time we arrived in Orlando, it had spread a bit. As we checked into our magical village, Give Kids The World, we noticed it had continued to spread. The only troubling factor was that it spread all over his entire body, the palms of his hands and soles of his feet included. That evening, we contacted his pediatrician, and were urged to go to the local emergency room. So, we went to Arnold Palmer hospital for Children. Thankfully, we met some amazing and kind people. But, true to form as it seems to go with our family and medical “issues” – they were a little bit baffled by what was going on. His lymph nodes were a bit swollen, but that was chalked up to a recent strep throat infection. He’d been on antibiotics, and initially they thought a possible medication reaction, but that seemed to be also incorrect. They made mention of leukemia and also Rocky Mountain spotted fever, but said both were extremely unlikely, as there wasn’t other tell tale symptoms accompanying his rash. They also said it would be pointless to test at that point, as he’d so recently had the strep infection. We had four different doctors, and three separate nurses come by to check him out. They were baffled, but weren’t overly concerned. That said, there wasn’t much they could do, but did give us benedryl and send us on our merry way. We were told not to go out in a whole lot of public places for at least the next day or so, and until his rash started getting better not worse. So, that is what we did. We kept him home while his sister and brother went out and about and did a few things. We had some good time to bond, and just rest and relax together. While that started our trip, that would not bring us down.

The weather. We anticipated Florida being hot and sunny. We definitely got the first half of that equation. From the moment we got off the plane, we noted how muggy and hot it was. We also surmised it would likely rain or storm soon. What we didn’t know was just how much of our trip would be covered by this kind of weather! That first evening, we had a severe thunderstorm warning, along with a flood warning. We remained safe, but that was not the most fun time ever. When there was a break, I took the munchkin (Janet’s brother) to the hospital. That next morning, she and her brother went with their daddy to have some fun. There was a playground that is a life sized Candy Land play area. They were very excited to go there, but unfortunately it was closed due to inclement weather – previous, and evidently what was to come. So, they had a variety of other mostly indoor fun.

The next day was pretty much a repeat of that first day, weather wise. There were severe storms, and lots of lightening/thunder. At this point though, we were determined to not allow the weather to get the best of us. Jeremy’s rash was looking better as well, and so we made the trip to the Disney parks. We went to Epcot to start our adventure. Unfortunately, a decent amount was closed due to the weather. This, however, would not stop us from having fun and making those special memories. We had a blast, and got to experience some pretty cool Disney magic. Again, the weather prevented some of the attractions from working. A show or two were cancelled because they were solar powered, and there just was too much cloud cover to allow for enough energy and such. No worries, we’d still keep on keeping on! That evening, we made the decision to stay until the park closed, and watch the light / fireworks show. That was spectacular. Thankfully, the weather held off long enough to really enjoy that, and to get back to the vehicle. The light show mixed with the beautiful fireworks were awesome – and just the perfect mixture of fun to put a kid TO SLEEP!! Janet was out like a light – for the majority of the show. She was exhausted. Her little body isn’t used to so much activity. She was okay, just tired. We did take lots and lots of pictures, and video recorded the entire thing. We will watch it with her later. She seemed just fine with that idea!

The next day, and for the three days that would follow, we had more storms and rain. Lots and lots of rain. In fact, the first day we saw the sun peeking out of the clouds was the day before our departure. Not to worry. We learned to sing and dance in the rain – literally and figuratively. We went to Downtown Disney. Janet went to the Bibbidy Bobbidy Boutique, where she had her makeup and nails done, and was transformed into a little princess. Her princess makeover also included having her hair done. Well, she was concerned because she has virtually no hair. That was not a worry, however. The fairy helpers were so kind and had the perfect wig to complete her beautiful new look. She got to be princess Aurora as Sleeping Beauty. To watch her excitement through the process brought (happy) tears to my eyes. She knows without even the shadow of a doubt that she is beautiful, inside and out — and that hair isn’t the make or break point in being beautiful. She did, however, quite enjoy the wig and new look. She enjoyed the glamour and excitement of being a princess. She got to wear her wig, new dress and wand around for all to see. She even perfected the princess wave. That lasted for approximately ten minutes – until the wig was scratchy, and she wanted it off. No worries. She was beautiful beyond words, and was having fun. From there, we got to go run through the rain for a Disney princess photo shoot! We could have complained because of the crazy amount of rain, but we opted to have a good time, despite the stormy weather. She had her pictures taken without the wig, and was so happy to do so! After all, it captured HER right now…at this moment…with the fuzzy new hair she’s currently sporting.

From there, we went to a glamorous lunch. Well, that was the theory at least. In reality, it was overpriced, overcooked and not worth it. However, it was Disney, and we weren’t going to let over-priced less than exciting food ruin the rainy day. Instead, we let the kids get special drinks (Italian sodas for one, chocolate milk for one, and cranberry juice for the princess) and just enjoyed each other’s company.

The next day, we went to Universal Studios. We figured that would be a great place when the weather was still supposed to be rainy. We were told most of the attractions were either inside or under cover. And they were. It was the distance BETWEEN them that made us realize that it may or may not have been the best option. It was fine, however. We got to go on several rides and saw several attractions. There will be lots of pictures and videos to come. There were only a few rides that we took that Janet could not ride, due to being little. With this said, it was likely for the best because she’s too young to enjoy or not be scared by some of them anyway. We were able to just relax and spend time together as a family.

The following day was spent at Disney’s Magic Kingdom. One thing that I was determined we’d share as a family was “It’s a Small World” ride/attraction. I did that with my family when I was very little, and I wanted to share this magical experience with my own family. So, that was actually the first thing we decided to do at Magic Kingdom. We boarded the boat, and had a thrilling and relaxing little adventure. Janet lit up, and was in awe of every part of the ride. Her brothers even had a great time! When she was looking one direction, and her brothers thought she was in danger of missing something – they’d make sure she turned to look. We have lots of pictures, and also video from that experience as well. From there, we went to the big carousel. She and her brothers all wanted to ride a horsey. On our way to the entrance, we ran into a princess. She met Janet, and learned that we were there for her Make A Wish trip, and she took us just across the patio area to a very special spot – with the Magic Kingdom castle as a backdrop. That was neat. She had an onlooker use my phone to capture the picture, so I could be IN the picture WITH the kiddos. That was so neat. We then rode the merry go round. From there, we went to the Princess autograph and picture taking adventure. Janet got to meet the princess from Frozen, as well as Aurora. It was very neat for her, and for all of us. Pictures, of course, are coming! We went on lots of rides that day, and spent much quality time together. The kids all really enjoyed both Thunder Mountain and then Splash Mountain. After that, and to conclude our fun for the day, we took the train back to Main Street, so as to experience seeing the park from the train as a vantage point. That was also a neat experience.

Walking. Together, we did lots of walking. (We did have a stroller to use for Janet, and she was allowed to have her stroller function as a wheelchair when needed because she lacked enough energy to do a full day of fun, much less walking.) That came in quite handy, truth be told. There were times she wanted to be strolled, and there were times she wanted to be held/carried. There were not that many times that she actually wanted to walk. That was okay though…we took turns holding her, or letting her ride. Through it all, we were grateful to be there, and for the opportunity that had been afforded to our family.

Our final day, we had a flight late in the day, so decided to make one more adventuresome day. We went to Sea World. Though we didn’t have a full day, we got to see dolphins and flamingos. In all honesty, we weren’t able to go on a lot of rides, as Janet was too small for much of it, and we didn’t want to be drenched. So, we just enjoyed the surrounding area of the park, relaxed at an underground cove, and watched dolphins from below ground. That was a really cool experience.

Sadly, it was time to head to our departure. I wish I could tell you that it was an exciting time. The airlines welcomed us as a Make A Wish family, and that was neat. We had help when needed, and finally got to our gate for departure. As soon as we took our bathroom break, and got to our gate, it was time to board. We boarded and got comfortable. One disappointing thing we discovered when we landed was that one of our carry on bags had been misplaced, and likely left at the departure gate in Orlando. So, that was lovely. It was an important carry on, and included the kids and my medications. Thankfully, we have extras, and have filed the report to hopefully be reunited with our missing bag soon. We’re hoping this is a quick process. There were meds, kids toys, and some spare clothing in that mix. After baggage claim, a nice man greeted us, and took us off to the limo. We completed our Make A Wish trip with a limo ride home. It was beautiful, neat, and overall – amazing. We weren’t happy the magical trip had concluded, but were extremely happy to see our home.

That was until we walked inside. It was fine…or at least seemed that way. As we flushed the toilet, and attempted to refill my water bottle. It was at this moment that we discovered that the water had been cut off in our absence. We had made the payment online, and instead of that working, it evidently hadn’t gone through after all. So, yeah – that was a lovely welcome home surprise. Again, it was another opportunity to sip on the freshly squeezed lemonade. First thing this morning, we contacted the water company, and needed to go in person to make the payment. They assured us it would be turned on quickly, and apologized for the welcome home the way that it was! It wasn’t a bad transaction, and connecting with them wasn’t a hard process. It was annoying to have to go through, but hey – now we have water again. As we were trying to get them paid, we noted that the card we were using was denied. It turns out that having fraud protection is a great thing. Since there was questionable activity (we traveled outside our home and adjoining states) our accounts were temporarily frozen. I do say it was good to have this, because we realized that if our stuff had actually been stolen, having that protection in place is priceless. Just not when trying to get life back to normal, and payments processed! Not to worry, we did get that all taken care of. Now we have water again!

What was truly beautiful was watching our kids have fun – together – without the worry or concern of radiation, chemo or a hospital stay. Just watching my little girl, and her brothers be KIDS…kids being kids….that was and is priceless. So, while life gave us lemons, we enjoyed the lemonade.

I’d like to personally say thank you for the continued thoughts and prayers surrounding Janet, this trip, and our entire family. We are sincerely grateful for each and every person who connects with this blog and also Janet’s Facebook page. (Found at http://www.facebook.com/prayingforlittlejanet)

Faith In The Struggle

Standard

Your faith will be illuminated, especially in the midst of a struggle. No matter what the situation – good or bad, whatever faith you propose to have — it is that faith that people will see. How you respond in the struggle will be a true test of what level of faith and trust you have in the Maker of all of creation.

My life recently has been turned upside down. I am struggling in a way that I don’t even always understand. As I find myself walking down this new path that I certainly didn’t ask for, I do find my faith being strengthened. I don’t understand what all is happening, but I love a God larger than life. Regardless of the struggle, He is faithful. He is good, and that is never changing.

Does that mean I like where I am, or what’s going on? Not at all. Am I grateful that God is able to use even this for a greater purpose? Yes, that I can answer yes to.

What is my struggle, you may be wondering? Let me share…

We found out two weeks ago today that my four year old daughter had a brain tumor. Talk about unexpected. There was the thought that she had a viral illness, and nothing more. Certainly not this. She underwent surgery to remove it a week and a half ago. The surgery was successful, and it appears that they got it all. That is the really good news. The fact that it’s aggressive and rapidly spreading – not so much. So, even though they got it all, it’s quite likely that she’ll have to go through chemo and/or radiation as well.

I wrote the following few thoughts four days after she was admitted at the hospital:

It’s really a hard thing sometimes – maintaining faith in the middle of some unimaginable emotions and situations. I have faith in a God larger than life. He created my little girl, and He knows her – from the inside out. He knows exactly what she needs, and how to take care of her. No matter what she (or any of us) goes through, He gets it. His love for her is strong, and never failing.

I know I sound like I’m preaching – and I guess to a point, I am. My thought pattern is this – regardless of what’s going on in that little body of hers, God is still in control. I don’t have to understand or even like what’s going on, but He is definitely in control. He is holding her safely in the palm of His hand.

My faith is strong, and I pray will remain unshaken. I hope that I can continue to see this through the lens of faith, and perspective of His amazing love.

Faith in the struggle. Struggle allows you too realize that things don’t always go as planned. In the midst of a struggle, though, it is okay for things to not always be okay. The key when things aren’t going as planned is to just know with certainty that God’s got this… Yes, even this.

As you can imagine, things are very tough right now. It’s odd, because it’s almost as if my heart is simultaneously broken and filled with hope, all in one. What I can say is this though. God is still good, and that fact remains. Please know how much we value your friendship, support, encouragement and especially – your prayers. Grateful beyond words.