Friday, September 30, 2016

Post-Hospital Visit Check

This past Wednesday Ellie had a post-hospital stay blood count check, and to our surprise, her numbers are continuing to go up! Seriously, she already had a room ready for her in the infusion center, because her doctors were sure that she would need more blood. We were all shocked when we saw the results.

Ellie was so happy to go home and not stay at the hospital that day.

Hemoglobin: 10.7 (steadily going up)
Platelets: 120!!! (the highest they've been in a long time)
ANC: holding strong at 720

To clear up any confusion, platelets are identified in the thousands. So, 120 and 120,000 mean the same thing. I apologize for any confusion I may have caused in previous posts.

This numbers are amazing for two reasons:
1. Ellie is improving and no longer in such a delicate state.
2. Ellie will most likely make counts next Tuesday and will not be delayed with started her next phase of treatment. 

When Ellie came home from the hospital, we knew that her next phase of treatment was to begin on October 4th. Whenever she enters a new course of treatment, she has to "make counts". Her ANC must be over 750 and her platelets over 75. Upon leaving the hospital no one really thought that her body would recover in time. She would likely be on a chemo hold until her blood counts improved. But, this visit gave us hope! It looks like she may be good enough to start next Tuesday as scheduled. This is wonderful news!

So, Ellie's blood counts were the good news. Her weight, however, was the bad news. She is losing weight again. While she was in the hospital, Ellie was on IV nutrition, so her weight actually increased a little. Since coming home though, her weight has dropped. This is very frustrating. It took Mike and I such a long time to finally get some weight on her and have her regularly eating. It feels like the hospital visit erased all of that work, and now we are back at the beginning.

What does this mean? It means that fat is the most important thing for Ellie right now. What does that look like? Avocados, cashews, butter and heavy whipping cream. Ellie loves avocados, so we continue to give her those. We recently discovered that she has a taste for cashews, so those have been added in as well. Butter gets put on all of her food, and her cup of milk is really half whole milk, and half heavy whipping cream. We have tried everything. Her taste buds are completely warped right now, so almost everything is unappetizing to her. We have been giving her an appetite stimulant again, and have slowly noticed an interest in food. 

Ellie's breakfast one morning. All she would eat was the butter.
Win. That's all I really wanted her to eat anyway.

In addition to eating, the other struggle Ellie has been facing this week is separation anxiety. After being with me 24 hours a day for 5 days straight, she did not like being away from me, which unfortunately had to happen a lot this week. There were two separate instances where after dropping her off with my mom, she screamed and cried for over 45 minutes. To give you some context, Ellie has seen my mother, on average, probably 3-4 times per week for her entire life. This was clearly not normal behavior for Ellie. But, I love my mom so much and her response was perfect, "I can hold out longer than she can."

Calm and happy at Nana's house after the meltdown.

Please pray that Ellie continues to physically improve, that her blood counts stay high and her appetite increases.

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

Oh, and one more thing, Ellie has starting losing her eyebrows and eyelashes. I know. You forget about that. I was hoping that part of the hair loss wouldn't happen, but it has. To be honest, it's not as bad as I thought it would be. She is still, and will always be, our beautiful and silly Ellie. 

Monday, September 26, 2016

Day #5 of Hospital Visit & Home!

On Saturday, our sweet, happy Ellie came back to us. A body tanked up with fresh blood and platelets (that she would accept!) was exactly what she needed to begin the healing process. She spiked a fever on Friday night, and then again early Saturday morning, but after that point, her body was rapidly improving. 

I let her sleep in as long as she wanted to, and that morning it was late.
Her body clearly needed the rest.
Here she is in her favorite position: sideways on the bed, with her head on my leg.

Feeling good!

Ellie had to hit three milestones before she was allowed to leave the hospital:
1. No longer dependent on blood or platelet transfusions.
2. No fever for 24 hours.
3. Able to eat and drink on her own.

Things were definitely looking up for Ellie, and we started becoming very hopeful for a Monday release. She did not require any transfusions on Friday or Saturday, her blood cultures were coming back negative for infection, and she was not having any more fevers. We just needed her to eat and drink on her own. She had no interest in either, and really had not consumed much of anything since the previous Monday.

Ah, the hospital. Where bedtime routines mean nothing.

Sunday morning came, and it was the first time Ellie had been fever free for 24 hours in several days. Her counts came back with good news for the second day in a row! Her ANC and hemoglobin were steady and her platelet count was increasing. YAY! 

To be honest, everything else that has happened since then was a bit of a blur, and quite honestly, it really doesn't matter anyway. We met with the doctor and NP that morning and it was determined that Ellie was strong enough to go home. Her numbers were holding steady, if not improving, and everyone agreed that she would continue to get better quicker at home. Ellie was discharged at noon, and our family was together once again.

We're bustin' outta here!

Ellie insisted on taking a picture with all of the toys that she played with in the hospital.

SO HAPPY to be home!
For those observant ones, that is a picture that Nora drew
of Ellie receiving her blood transfusion in the hospital.

Finally, it was so good to wake up this morning with everyone together again. Thank you so very much for your thoughts and prayers for Ellie and our family during this difficult time. We could not have easily gotten through this last week without your love and support. 

Saturday, September 24, 2016

Day #4 of Hospital Visit

What a difference today brought. Ellie's numbers are up! 

Her ANC is 1640.
Her platelets are 26,000.
Her hemoglogin is 9.4.


To be honest, this was a complete shock to hear this morning. I was not expecting her numbers to go so high so quickly. It seems as though that the volume reduced platelets were easily accepted by her body, and even though the blood transfusion was cut short, it was able to give her enough of the boost that she needed. Additionally, she has had three separate blood cultures taken, and the results are beginning to come back, all negative. 

Praise the Lord! Our prayers are working!

(I will update more soon. But right now, I am off to bed. I just wanted to get that good news out there!)

Days #2 & #3 of Hospital Visit

Thursday brought some of the lowest numbers Ellie has had since she was diagnosed with Leukemia. Her ANC was around 200 and her platelets were 5,000. Ellie was moody and irritable the entire day, but it was mostly uneventful until Ellie received her platelet transfusion that afternoon. Her doctor wanted her counts checked 1 hour after the infusion and then 4 hours after the infusion just to make sure that her body was getting the boost that it needed. Well, after the hour check, Ellie's platelet count was only at 11,000. It should have been much higher. For some reason her body was not accepting the platelets.

Good Morning!
It's not going to be a good day!

There are very few things that Ellie can control in her life right now.
Looking at the camera is one of those things.
So, more often than not, she will not let us take a picture.

She did perk up tremendously when Mike arrived later that morning.

She smiled long enough for a picture.

Ellie has another rhino virus (I think she has had one continually since diagnosis), so it's likely that she is rejecting the platelets because she is also trying to fight off this cold. Her little body has way too much going on, and simply cannot handle it all. She spiked a fever that night of 101.5. I know that may not seem high, but since I'm now paranoid about anything over 100.4, that was a bit scary. Turns out, since we know she has the rhino virus, and that is the likely source of her fevers, the doctors and nurses aren't too concerned if she has a fever. However, she cannot go home until she has been fever free for at least 24 hours. 

Ellie spent most of that day in my lap on the bed.

Platelets were needed again on Thursday night, but since she has not been reacting positively to them, we opted to forgo for the time being. There are other options, which we ended up exploring on Friday. Since Ellie has not been eating much since Monday, it was decided that she would start that same night on TPN and lipids, basically complete nutrition through her IV.

Friday morning did not look much better. Her counts were still very low, and it was determined that Ellie would get both a blood and platelet transfusion that day. The platelets would come first, however they would be volume reduced. From what I understand, this means that the platelets are washed of anything excessive. It's strictly platelets entering the body, which make it easier on the body to accept.

Friday was a little better, in that she didn't have to constantly be glued to my side.

Ellie received the volume reduced platelets just fine, and then started on the blood transfusion. Because of the long process, Ellie was still getting blood into the early evening, when all of a sudden she spiked a fever. 101. They stopped the blood, waited, and then restarted. Another fever spike. 102.6. This was definitely not good, especially since it was happening during a transfusion. The blood was immediately stopped, and the on call doctor was on the phone. It was determined that the fever was likely caused by the rhino virus and not the transfusion. However, it would be stopped for the time being. Ellie was given Tylenol and slowly her fever came down. 

These two days were exhausting. 

Another random thing to mention, Ellie is constantly "picking". Picking at her skin, her stuffed animals, her blanket, me....anything. She did it when she was first diagnosed and in the hospital, but I chalked it up to all of the medicine she was on, specifically the steroids and chemo. But now, she is doing it again, and not on either of those types of medications. Something is causing it. Maybe it's just her way of coping with anxiety that she feels while in the hospital? I don't know. 

Friday, September 23, 2016

Night #1 & Day #1 of Hospital Visit

After a very long day at the hospital on Tuesday, Ellie and I came home and everything seemed normal. We all ate dinner, put the girls to bed, and then Mike and I settled in to watch TV for going to bed ourselves. Around 10 pm we were ready to go to sleep. Like every other night, we always go in to check on all three girls. I opened up Ellie's door and immediately heard her move and make noise. She was awake. Red flag #1. As I approached her crib, I smelled something, probably vomit. Red flag #2. So, in the dark I asked Ellie if she was sick and had thrown up. She said she she did not, so I turned on the lamp to check out the situation. No vomit. Instead, Ellie's area around her port, her shirt and her sheets where she was laying were soaked in blood. She was bleeding from where her port had been accessed earlier in the day. This was not good.

If I may, let me pause for a moment. There have been so many instances during Ellie's treatment, and certainly during this week, where she has had major, crazy stuff happen to her. (That's the technical phrasing.) But in the moment, in never seems that way. Then, I reread what I have posted, or relay to someone else what a doctor said. It's then that I realize how utterly unreal this entire experience is. 

"Ellie is having an allergic reaction to the platelets she's getting. She's having difficulty breathing."

"Ellie is bleeding out from her port and her side is covered in blood."

"Ellie's number are not going up. She needs platelets and blood, yet again."

Any one of these on their own are a risky and scary situation, and Ellie had all of these happen on Tuesday! Cancer is not normal. None of this is normal. Miraculously, as we have gone through this process we have never felt too overwhelmed with Ellie's treatment. While all of this has become our new normal, Mike and I have never lost sight of how extreme all of this truly is. 

All of this to say, we may have become desensitized to the severity of every decision along the way. We may talk nonchalantly about lumbar punctures, blood transfusions and chemotherapy, but we still realize that this is not a normal experience that Ellie is living right now. Within the bubble of pediatric cancer? Yup, totally normal. Outside of that bubble? Real life? This is a crazy, unbelievable experience. 

I don't know if I was able to convey that properly. So, thank you for indulging me.

Now, back to the blood. In that moment, we were pretty calm. We already knew that Ellie's platelets were low, and they were likely still low, even after the transfusion because she was not clotting properly. The spot where Ellie had been accessed earlier in the day must have clotted at some point because she was not bleeding when she went to bed. Somehow it became dislodged, and that's when the slow bleeding began. We immediately called the NP on call, and she suggested putting pressure on it to see if it would clot. After about 15 minutes of doing that, we realized that while the flow was slowing down, it was not clotting. We already knew that she was neutropenic, so that combined with the low platelet count, labored breathing, low grade fever, pale coloring and general irritability, we made the decision to take her to the hospital that night.

I snapped this picture of her just before we left.
The blood had already been cleaned up.

Mike stayed at home with Eva and Nora, and Ellie and I arrived at the hospital around 11:15 pm. She was immediately admitted to the floor and our long day turned into a long night. Ellie was immediately given an antibiotic in case there was an infection, and then ordered to get a chest x-ray. 

This all went down at 1:20 am.

Both of us finally got to sleep around 2:30. There was a couple of interruptions during the night, specifically regarding platelets. The doctor wanted her to receive more, but I was hesitant. Since Ellie had an allergic reaction to her transfusion earlier in the day, and it was now 4 am and I would likely be asleep when the platelets arrived, I didn't want to risk another reaction and me miss it. Valid point. However, the doctor reminded me that if she did not receive the platelets then she could continue to bleed. Better point. You win. So, Ellie received her second platelet transfusion around 6 am on Wednesday morning. After a long night, we were both able to sleep in a bit. 

In case you are wondering, that pillow says "World's Best Mom".
The girls gave it to me for Mother's Day this year.
Ellie quickly commandeered it as her own and now sleeps with it every night.

Wednesday was spent mostly in bed, often with Ellie sitting on my lap. She was able to do some painting, but mostly just wanted to watch Daniel Tiger.

This has been my view a lot recently.

The excessive bleeding (from her gums and her port) have stopped. But, she is continuing to bruise on her body and has developed petechaie, small dots caused caused by bleeding into the skin.

We moved into a room on the oncology floor of the Children's Hospital, and Ellie received a blood transfusion later that day. She had also been showing sign of severe abdominal discomfort, so an ultrasound was ordered to rule out anything severe. Unfortunately, that happened at 10:30 pm that night. 

The ultrasound was a miserable experience for both of us.

The results ended up showing nothing. My initial suspicion was constipation. These past two days have proven that suspicion to be correct. She has received lactulose to help with her constipation, and slowly she has become less irritable when using her diaper. 

This is an abrupt way to end this post, but Ellie is nearing the end of her nap, so this is all I am able to write for now. I will try to update again later this evening. As a heads up, Ellie will continue to be in the hospital for several more days.

Please continue to pray for Ellie's complete and permanent healing.

Please pray specifically that Ellie's body begins to accept the platelets and recovers enough to make her own.

Thursday, September 22, 2016

What Break?

Our long day at the hospital has quickly turned into a long week at the hospital.

In the past three days, she's had 3 platelet and 1 red blood cell transfusion. She has a cold and is running a low grade fever. No other signs of infection, but is on antibiotics. She's not wanting to eat much, so we started her on IV nutrition tonight. Her WBC and Hemoglobin are ok, but her platelets and ANC are dropping. Her doctor thinks her body is not accepting the platelets because she is also fighting off virus. So now, they are going to try to get match platelets (match not only Ellie's blood type, but antibodies as well). But, that test can take up to 48 hours, and then they have to find and get the platelets that match hers. Bottom line, Ellie will be here for a few more days. 

This is not uncommon during this period of treatment, but it's also not normal. For whatever reason, her body is taking a little longer to rebound. She is closely monitored, and has wonderful people helping her. In no way at all is this a relapse of leukemia. It's just the harsh reality of the treatment to keep the leukemia from returning. 

Thank you for your continued prayers.

I'll try to add more specifics soon, but Ellie has been very clingy these past few days, thus making it difficult to type anything up on the computer. We went to the hospital on Tuesday night, literally within hours of me hitting "Publish" on the previous post. The attacks on Ellie and our family are real right now. Honestly, sometimes it's laughable. We are taking it day by day, knowing that Ellie is being protected and loved by our Father in Heaven.

Tuesday, September 20, 2016

Delayed Intensification is (Almost) Over

Ellie is so close to being done with this trying phase, but is not quite there yet. 

The first of two long weeks at the hospital ended with a another haircut. Ellie's hair had almost all fallen out, but there were still a few lingering wisps of hair. Nothing that a pair of children's scissors couldn't handle while waiting for her chemo to arrive from the pharmacy.


It is certainly not salon quality, but it will do. 

That Saturday was spent running with the cows, and then Sunday and Monday were spent getting getting rid of lice. Onto the next week of treatment!

Ellie went back in on Tuesday to start her second week of treatment. She played with playdoh while waiting for her chemo to arrive from the pharmacy. Once it came, it's a quick two minute push. But that day, I let Ellie stay a bit longer and eat lunch so I could visit with some friends who were coming into that hospital that day for surgery for their daughter. 

What you are seeing is a lot of food that never got eaten.

Wednesday saw a red blood transfusion. We knew this was going to happen at some point, and Ellie's counts did drop from Tuesday to Wednesday, so we opted to go ahead and give her blood that day. It made the time at the hospital a little bit longer, but definitely necessary. I think Ellie and I were there for 6 1/2 hours. Thankfully, she usually has no problem napping while at the hospital.

At home, there are  no  rarely special meals.
But, at the hospital, she is allowed whatever she wants. This day she requested a cookie.
All she ended up eating was the outer edge of the smiley face. :(

Starting her blood transfusion.

Sleeping while it continues.

Since Ellie was already accessed, and there were no other issues to contend with, Thursday was a very quick visit. Under two hours. (Waiting for the medicine to arrive can sometimes take a while.) 

And finally, Friday arrived! Ellie's last hospital treatment day of Delayed Intensification! It was also a very quick visit, under an hour, and I cried when it was over. I was so glad that these two weeks were complete.

Ellie received a new Barbie and was so excited!
One of her favorite things to do at home is play with dolls in her dollhouse.

And, here she is at home on Saturday playing with her new doll.

When Ellie left the hospital on Friday, she had an ANC of 1200. With a healthy (for her) immune system and clearance from her nurses, we went ahead and took her to a going away party for some friends on Saturday. I also took her and had her sit with me while Eva and Nora took their gymnastics class. It wasn't ideal, but it was the best option I has that day.

Sitting in her sanitized cocoon of safety.

I do not recall exactly when it was, either Sunday or Monday, but I noticed some small bruises just above Ellie's knees and on her thighs. Bruises on her lower legs (or Eva's or Nora's) are a dime a dozen, so those never concern me. But, now knowing what to look for, I knew that these bruises were not from any accident. 

Ellie was already scheduled to go into the hospital today for her 4th IVIG. If she did not already have this appointment lined up, I would have called the doctor on Monday. Since it was already planned, I just watched if any more showed up (one on the back of her thigh), and reported it to the nurses this morning. They know that things can get "bad" again at this point, so they already planned to do a CBC (complete blood count) to check her numbers once she arrived. 

So, we arrived at the infusion center, Ellie had her vitals taken, pre-meds given (Tylenol and Benadryl), her port accessed and then blood drawn. It can take a while to get the blood counts back in the infusion center, so we settled in and Ellie began her IVIG.

She was in a terrible mood all morning. She did not want to talk to anyone and did not want to eat anything. Once we got her numbers back, it all made sense. Her platelets were at 6,000. That is so low. No wonder she was bruising and irritable. She was feeling terrible. 

After finishing her IVIG, Ellie began her platelet infusion and quickly went to sleep. It was 1:30pm, and at that point she was several hours removed from her dose of Benadryl. Just before 3pm Ellie woke up coughing. A lot. And she sounded really congested. I say that the nurse caught it, but she says that I caught it. Nevertheless, one of us noticed it. Ellie was having an allergic reaction. Her nurse immediately stop the platelet infusion, and called in the Nurse Practitioner from the clinic. She continued coughing and started wheezing, so she was promptly given Albuterol and another dose of Benadryl. This time straight into her IV. It all happened very fast, and just as quickly her breathing returned to normal. It was then determined that she had received enough platelets, so she was switched over to saline and watched for an additional 45 minutes before going home. 

Once the excitement of the moment wore off, I happened to glance at Ellie and noticed something in her mouth. "Food in her teeth? That's weird, she didn't eat anything." Nope, not food. It was blood that had already started scabbing.

Another tell tale sign of low platelets are bleeding gums. With Ellie's disposition this morning, it was nearly impossible to notice. But once she began receive the platelets (they are the "sticky" part of the blood that assist with clotting), the blood started clotting on its own, but not before she had already started bleeding from her gums. Another confirmation that Ellie was really sick and needed intervention today.

Oddly enough, Ellie was very excited about the blood in her mouth.

It was a very unexpectedly long day (7 1/2 hours). It was a very emotional day. She is fine now, and once we got home her attitude perked up a little bit. She is neutropenic, and we now have to return on Thursday for a blood count check, and a likely blood transfusion.

This is really hard right now. 

It is difficult to admit, but we are struggling with everything. In addition to Ellie's treatment, we have had a lot of other things happening to our family. Sometimes it feels like a new attack each day. Honestly, everything else is simply an inconvenience, and those things we can handle. Ellie is getting through her treatment, and even though there are many big bumps in the road right now, she will be ok at the end. But it is still hard to have to go through.

If you think of us, please say a quick prayer for Ellie. 

If you have more time, please pray for the following:

Pray for Ellie's complete and permanent healing, and for no short term or long term side effects from the medicine.

Pray for understanding and patience for Eva and Nora.

Pray for strength for Mike and I, spiritually, physically, emotionally, mentally and financially.

There are many more things that I want to share about this point in Ellie's treatment, but it's so hard to organize my thoughts. It is difficult, and in many ways that I never anticipated. Even still, it could be so much worse. If our family was going to be thrown into the world of pediatric cancer, Ellie has the best diagnosis that there is. We are choosing to look at the positives, and we know that our Heavenly Father is protecting us and loves us. Thank you for checking in on us.