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. 

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