Friday, May 27, 2016

Ellie's Haircut

The big haircut happened on Wednesday, and as promised, here are some pictures.

To remind you of where she began, here is a picture of Ellie on the day we first went into the hospital, less than 2 months ago.

Ellie's hair was finally beginning to grow and get some fullness!

This is what it looked like before we got it cut on Wednesday.

I know, it's difficult to really see around the fairy wings,
but this is the only picture I have of the back of her head.

And yes, for those of you that have noticed,
the CAST production of Peter Pan Jr. runs daily in our home.

The following pictures, just before she got her hair cut, really show the "wispy-ness" of her hair.

She was being so goofy and had such a good attitude the entire time. 

At first, we tried for a short bob. I did not take a picture. Suffice it to say, it looked really bad. So, a pixie cut it is!

I was only able to get this perfect profile shot because
she was being spicy and refused to look at me.

Yes, Ellie's clothes are about to get infinitely cuter, and more bows/headbands will be purchased. But, we think she looks adorable! Her hair looks so much better now, and it just reminds me of when she was a baby. Since she is our last, I will gladly take this walk down memory lane. To be quite honest, one of my favorite areas to kiss my babies is on the back of their neck. Once they start growing in hair though, that goes away. So, the silver lining to Ellie losing her hair is that I get another chance to kiss that sweet spot. 

It will continue to thin out, and once she reaches the Delayed Intensification phase of treatment in August, it will likely all fall out. Another cut/shave is in her future, but for now, this will do just fine. 

Oh, and can I say that this has just kind of been a big pain. Honestly, I never really thought about it before, but aside from the emotions that go along with it, hair loss is just annoying. I feel like there is hair all over our house, and Ellie did not even have that much hair to begin with. So not only does Ellie's hair cut look better, but we also won't have to deal with stray hairs everywhere.

Ok. Now onto her recent treatments.

Ellie's third and final lumbar puncture for her Consolidation phase was yesterday, and all went well. She will not have another LP for several weeks. I am not exactly sure when it is, I just know that it is far enough away that I do not need to think about it right now. And that, is a good thing. The days are really quite easy, but goodness are they exhausting.

At the clinic waiting to see her doctor, before going to the day hospital for her LP.

At the day hospital getting vitals taken before having her port accessed.

Resting after her procedure.

After hospital days, I tend to find myself in a good old fashioned funk. Not sad or depressed...more like checked out. To combat that, last week and today I made plans with family and friends. This helped the following days go by immensely better. I will make an effort to continue this after any hospital visit as Ellie's treatment continues. 

Some good news is that we have all of next week off from hospital visits. Yay! Due to Memorial Day, Ellie will not go to physical therapy again until the following Monday, June 6th, and she does not have to go to the clinic until the 9th. No blood count checks or anything. We are hospital/doctor free for a whole 10 days! It's the little victories along the way that help. So, things may be quiet on the blog for a bit. In this case, no news is definitely good news. 

Thank you so much for your continued prayers and love for Ellie and our family. We are doing well, but most importantly, Ellie is doing well. She is responding so positively to everything, it almost doesn't seem possible. Especially for a 2 1/2 year old. Your prayers are working, so keep 'em coming!

Tuesday, May 24, 2016

Progress on Daily Chemo

We are about half way through Ellie's Consolidation phase, which includes daily oral chemo at home. Going into this month we were a little worried because nausea and vomiting can be a side effect. And, let's face it, a child vomiting is one of the most miserable things to deal with. Just ask this dad

I am happy to report however, that Ellie has not vomited once! Hallelujah! We suspect that she is having some nausea because of a decreased appetite, but we cannot be certain. All we know is that the towel on her floor next to her crib is still dry. This is such a relief, because once Ellie reaches the Maintenance phase of treatment, she will be on daily oral chemo for about two years. Knowing how well she is handling it now brings us much relief for the future.

Is Ellie having any side effects? Other than the obvious hair loss and droopy eyelids, it's hard to say. She has had a significant decrease in appetite, but she also currently has a cold. So, it is really hard to determine why she does not want to eat. She is losing too much weight, and does not want to eat ANY of the high calorie/fattening things that we give her, so we are getting a prescription for an appetite stimulant. And yes, she did get a cold about a week ago. But, no fever at all. Even though the congestion is annoying for her, we are grateful that it has not developed into anything more serious. There are some minor mood swings and stubbornness, but we really think that is just because she is two years old.

She had physical therapy yesterday, and Eva and Nora came along too. It was so much fun for all three of them. Ellie's therapist has pretty much reached rock star status in our home, so the older girls were desperate to meet her and see what all this physical therapy business was about. 

Ellie: "When can I see Miss Abby?" 
Me: "On Monday."
Ellie: "Is it Monday yet? When is it Monday?"
And over, and over, and over. Until finally, it was Monday.

We will return again next Monday. At that point, we will probably space out her visits because she is progressing so well. Although I will be happy to have one less appointment each week, I know that Ellie will be sad to not regularly see Miss Abby. 

Tomorrow is kind of a big day. Ellie is getting her hair cut. It will not be a complete shave, but it definitely will be shorter. As much as I love my little girl, and as much as she is still our beautiful Ellie, she is definitely rockin' some Smeagol/Gollum hair. This cut will just make it all a little more uniform until she looses all of it, probably later this summer. I will more than likely post more pictures later this week, after her lumbar puncture (LP) on Thursday. Until then, just try to resist this cuteness.

Sunday, May 22, 2016

Ellie is Walking!

Yup, you read that right. There's a whole lot of this going on at our house...

Dancing to Peter Pan with her sisters.

Ellie loves going to physical therapy, and even though she has only been twice, she has made huge strides. When she went this past Monday, I carried her in and stood her on the floor. Without even thinking about it, she took a few steps. I think she then realized what she was doing and immediately stopped. But, the following evening she started walking again on her own, and she hasn't looked back since.

Ellie at PT

She still has more to relearn, but in the past week we have seen her regain her balance, try to run and overall manipulate her body in ways that she could not do a few weeks ago. We truly feel that your prayers are what is helping Ellie heal and adjust so quickly and easily to everything that she is dealing with. Thank you.

Last Thursday Ellie had another LP to administer chemo to her spinal fluid. Everything went fine. Ellie is very calm for a 2 1/2 year old, and seems to understand now when I tell her that she cannot eat until the procedure is over. From various conversations I have pieced together with the nurses, I think she is a favorite patient in the day hospital.

Waiting for her port to be accessed so she can go to sleep for the lumbar puncture.

Waking up after the procedure with Daniel Tiger.
It was chicken fingers again this week.

The older girls seem to be doing a bit better over this past week. Eva is almost finished with school (this Tuesday is her last day), and recently there has been a lot of swimming in the afternoons. I am looking forward to getting everyone on a new schedule for summer, or as best as we can with doctor/clinic/day hospital visits.

As always, please continue to pray for Ellie's complete and permanent healing, with no short term or long term side effects from the treatment. 

Thank you for your love and support for our family.

Sunday, May 15, 2016

If something seems hard to do, try it a little bit at a time.

Can you guess what that's from?

If you guessed Daniel Tiger...ding ding ding.

You must have a toddler.

To say that our girls, especially Ellie, love Daniel Tiger would be an understatement. (For those of you that are past/have not quite yet reached the toddler rearing years, Daniel Tiger's Neighborhood is the updated cartoon version of Mr. Rodger's Neighborhood. It is adorable, and one of the few shows that I can stand to listen to on repeat.) Since Ellie's diagnosis, she's been averaging several episodes a day. While she was in the hospital, there was one episode in particular that she watched over and over...and over and over...and over and over. Each episode has a moral/lesson, and in this particular episode they sing, "If something seems hard to do, try it a little bit at a time". 

The irony was not lost on me.

At times, this entire process seems extremely overwhelming. Fortunately, each phase of treatment is broken up, giving us short term goals along the way. It's easier to focus on the day to day, even week to week. Beyond that though, it's just too much to try and comprehend. We are taking it a little bit at a time. 

So, imagine what a wonderful surprise it was to learn that Daniel Tiger was coming to town!

Thanks to the extreme generosity of several friends, we enjoyed a wonderful afternoon out together as a family.

All of the girls LOVED it! Especially Ellie. She insisted on sitting in her own seat, and was mesmerized with a smile on her face for the entire show. 

Mandi, Kaffie, Alyson and Nahal...from the bottom of our hearts, thank you. We appreciate your love, thoughtfulness and generosity. We had a great time together, and I know that it is an experience that the girls will not forget.

Thursday, May 12, 2016

Consolidation Road Map - Day 1

After last week's lumbar puncture and biopsy, Ellie had a week off of medicine. So, it appears as though I took a week off from blogging. Most of the time, once Ellie finishes one course of treatment, she will have a little bit of a break before beginning the next one. This time she had a week off, and her next phase, Consolidation, began today.

(If I'm being completely honest, Ellie did receive an antibiotic on Saturday and Sunday. For the entire course of her treatment, she takes a couple of doses of Bactrim on the weekends. This helps to prevent a specific type of lung infection??? I'm not sure I am remembering correctly. But, there was no chemo or steroids given, so for all intensive purposes, it was a week off.)

Before I go on with her next course of treatment, I figured I would elaborate on last week's results. We are so thrilled with how Ellie has responded to her treatment so far! It is official, and we can say that she is in remission. Further tests showed less than 0.001% of Leukemia cells. This is exactly where we hoped and prayed that Ellie would be at this point. She is supposed to be cancer free at this point as a failed Induction would indicate more serious problems. With her diagnosis and course of treatment, she is doing amazing. One of her doctors today commented that nothing is 100%, but Ellie is as close to a 100% success rate as it can get. Praise God!

So where are we now? We are beyond thrilled that our Heavenly Father has provided, the medicine has done exactly what it is supposed to do, and Ellie is cancer free! However, she still has an incredibly long, difficult and tiring journey ahead of her. 

Yes, with a diagnosis of ALL, even after remission is achieved in the first month, a patient still continues to receive treatment for the full 2 1/2 years (give or take a month or two). Without fully understanding it myself, the best way I can explain it is that the leukemia will continue to return, over and over again. Everything from this point forward is to make sure it never comes back, essentially trying to head it off at the pass.

So, here we are today, with a lot more information about what Ellie has in store over the next two years. There is a reason why we were not told everything upon her initial diagnosis. Oh many drugs! So much chemo! So many steroids! So many lumbar punctures!

(Side note: When Ellie was 11 days old, she caught a cold and ran a high fever. When that happens, it's an automatic ER visit with every test you can imagine. Ellie ended up being fine, as it really was just a cold, but one of the procedures she received was a lumbar puncture. It was terribly hard on us, and still is. But my, if only we knew then, that that was just the first in a series she would receive over the next few years.) 

Back to today...Ellie began her next phase of chemo today which included chemo administered to the spinal fluid via lumbar puncture, chemo given by IV, and then oral chemo taken tonight before bed. For all of you accountants out there, that's three different chemotherapy drugs that Ellie received today. Ay yi yi. She has two more lumbar punctures this month, and also receives daily oral chemo. Believe it or not, this is considered easier than last month, which I do believe, because there will be no steroids involved. She could experience some nausea as a side effect, so please pray against that. 

"Where's my bed?"
Ellie asks this because she knows once she is in bed and wakes up, she gets to eat.
Here she is, waiting to get her LP.

Just chicken fingers and pretzels today. And no double fisting them either. :(
But, she is looking rather suspicious, don't you agree?

Her road map for this round is as follows: 
Vincristine: Day 1 (IV)
Methotrexate: Days 1, 8 & 15 (LP)
Mercaptopurine: Days 1-28 (oral)

Overall, Ellie is doing so, so great! Her appetite has leveled out, her weight is stabilizing, she is sleeping great at night (naps have recently been hit or miss), her attitude is mostly joyful (she is still 2...lots of "spiciness"), her fine motor skills are perfect, and her gross motor skills are improving. She's not climbing any rock walls or running any races, but she is actively trying to move on her own each day. 

Morning calisthenics with Nora.

Somewhat depicted in this picture, Ellie thinks leukemia is a free ride to sit on the coffee table.
I have to constantly remind her that it is not. 

Even with what lies before her, it is so encouraging to see her little body handling everything so well thus far. She began physical therapy this past Monday, and will continue to visit once a week. She LOVED it! Strength is clearly an issue with her not walking, but also balance. She has not quite regained it, and it is also difficult because she has been so top heavy recently. This should all level out soon.

(I forgot to take pictures during her actual PT, so these are of Ellie hanging out afterward.)

We are coming out of the fog of the initial shock of diagnosis, and settling into what everyone will call our "new normal". Ellie is not so prone to infection, so we ventured out to the beach on Mother's Day. It was wonderful, and she enjoyed the change of scenery. We can take her out to public places now, but still have to be extremely cautious with "germy" places, trying to avoid sickness as much as possible. 

Sooooo much better than our house, our car and the hospital.
The only places she visited for the past month.

Thank you for your continued love, prayers and support for Ellie and our family.

Please continue to pray for her complete and permanent healing with no long term side effects. (This is a new addition. The side effects are real and nasty. We do not want Ellie to live permanently with anything that is related to the leukemia or treatment.)

Pray for Eva and Nora to have understanding and patience as best as they can.

Pray for strength for Mike and myself.

Friday, May 6, 2016

Induction Biopsy Results

Ellie's biopsy results have come back, and we are thrilled to report that she is leukemia free! Our Heavenly Father is faithful and loving! We don't know about you, but we are celebrating!

(Further test results from Johns Hopkins will be received next week. But, as of now, Ellie's doctor said that she sees no signs of leukemia. We are choosing to celebrate and praise God now!)

(I cannot believe I forgot to include this earlier.)

Ellie is standing! And climbing! And walking!

Wednesday, May 4, 2016

Induction - Day 29

Today is Ellie's first big milestone. Her Induction period is over!

She was sitting on our bed so sweetly this morning, until I tried to take a picture.

This ended up being the best she could give me.

I have been both looking forward to and dreading this day for quite some time. First, let me explain why I was dreading it. 

Three little letters...NPO.

These are these are the letters that no parent with a child on steroids wants to hear. It means that their child is not allowed to eat. For a child on steroids, well, that's pretty much the worst news ever. Ellie had her lumbar puncture scheduled for 11 am this morning, so she could not eat anything after midnight last night. With the amount of food that she's been eating on an hourly basis, I knew that this morning was going to be rough. 

No matter how seemingly trite, our Father in Heaven hears our prayers. Because, Ellie did incredibly well. Really, it was the complete opposite of what I expected. As soon as she woke up, and subsequently asked to eat, I told her that she could not eat or drink anything until later. She was going to the hospital to see the doctor and then go to sleep. I explained that once she woke up, then she could have something to eat. 

Ellie understood everything that I was telling her. I know this because the entire morning she repeatedly said, "I'm tired. I want to go to sleep." And then, she started switching it up by asking, "Where's my bed?" She knew the end result was food! She specifically asked for: hamburger, hot dog, chips and french fries. When she woke up, Mike got her the hamburger, hot dog and chips. Ellie then asked where her french fries were. So, yeah, we had to stop at McDonald's on the way home to get french fries.

At one point she was double fisting with a hot dog in one hand and a cheeseburger in the other. Notice the bag of chips that is next to her too. She is lying down because this was taken so soon after the procedure, that she still had to remain in a flat position. The food could not wait.

She did well with not being able to eat anything this morning, but that doesn't mean she did not have her "spicy" moments. Ellie was the poster child for mood swings today. Literally, one minute she would be giggling with the nurse, and then the next she would be growling at me for having my arm in the wrong spot. Now that there steroids are coming to an end, all of these less desirable side effects should go away.

Which brings me to the reason why I was looking forward to today.

NO MORE STEROIDS! Yes, that is such wonderful news. Unless something were to go tragically wrong, Ellie will not need to be on steroids for that length of time again. She will be on steroids again for smaller "spurts", maybe a week at a time, but certainly not an entire month. Ellie's treatment or "road map" is broken up into different phases, and today was the end of her Induction. She has a little break from heavy medicine for a few days, and she will begin the next phase, Consolidation, next week.

Once Ellie woke up and was deemed ok, she was able to leave the hospital. I think we left around 1:30 pm, so overall, it was not a long day. Mentally and emotionally long, yes. But physically long, no. Since anesthesia gives her a nice nap, she did not want to nap again when at home. So, it was a bit of a cranky day, but nothing Daniel Tiger couldn't fix. (I think Daniel Tiger is the official television sponsor of Ellie's leukemia treatments.) She watched so much today, we got the (embarrassing) "are you still here?" notification from Netflix.

Yes. Yes, we are still watching Daniel Tiger after 6 episodes straight.
Don't judge us, Netflix.

By Friday, we should know how many Leukemia cells, if any, still remain in her body. The goal at the end of Induction is for there to be zero or trace amounts of cancer cells. From there, she will go through different phases of treatment, all to make sure that there is absolutely no way the leukemia will come back. From my understanding, this is pretty intense for the first 5-6 months, with at home medication and clinic treatments every 7-10 days. After that point, her treatments stretch out to once a month in the Maintenance phase, and she stays there for almost two years until complete remission is confidently achieved. 

Everyone tells us that the worst is behind us, but that does not mean that what is to come will be easy on Ellie. This next phase, Consolidation, is 29 days, involves 3 lumbar punctures and daily orally administered chemo. Bye, bye what's left of Ellie's hair.

Now that we are settling into a new normal, we are thinking clearer and our focus is not as tunnel-visioned. We are realizing more of everything that is involved with treating Ellie's leukemia, and one very ugly side of that is the cost. Cancer treatment is extremely expensive. While we are extremely grateful to have health insurance, it does not cover all of our costs. Without going into too much detail, we are discovering that there are no additional government or supplemental insurance programs that we qualify for at this time. Simply put, we will owe out of pocket tens of thousands of dollars for each year Ellie is treated.  

All of this to say, we need help. We know that there are programs out there to help families in our situation. We just need to find them. We are working hard to find these organizations and fill out the necessary paperwork. But if you happen to know of anything that could help, please let us know. We know that any amount, no matter how big or small will help our family with the cost of Ellie's treatments. Thank you.

For everyone that has thought of Ellie at some point this past month and said a prayer, said a kind word, or shared her story, we thank you. 

Family, friends old and new, near and far, strangers, strangers that have already become friends...thank you.

To everyone that has sent us a text, voicemail or email just saying, "Hey, we are thinking of you and praying for Ellie"...thank you.

To everyone that has brought our family a meal or donated money...thank you.

Our family has felt such love over this past month and we are deeply grateful.