Another Fever + Goodbye Consolidation Phase!

As I mentioned in my last post - we had a repeat of Round 1 of the Consolidation Phase and a repeat of the same nasty Chemotherapy that destroys her counts.  We were expecting for the fever to hit us (if she were going to get one) around Thanksgiving, but thankfully we dodged that bullet and had a wonderful Thanksgiving with our family!  The fever did come though!  She got a cold a few days after Thanksgiving and a week later, she spiked a temperature on Sunday evening (12/3).  Numbing cream on the port and off to the Hospital we went - rinse and repeat!  We expected her counts to be low given the cold she had and sure enough her ANC was at 0 so to the pediatric unit we went to stay for the next several days!  They administered the standard antibiotic that pretty much covers any kind of infection, took blood cultures to see if anything is in her bloodstream, and a swab up the nose to rule out any kind of respiratory infection.  The blood cultures take 24 hours while they wait to see if anything grows on them - confirming or denying an infection.  The following night one of the cultures was positive and the other was negative.  The doctors seemed to think that it was most likely a contaminate that caused the positive (something as simple as her coughing or sneezing while they drew her blood).  Addie didn't have any other symptoms other than her fever and her Respiratory panel came back negative. She only had one dose of Tylenol in the ER and was able to fight the fever on her own the remaining time we were in the hospital.  To be able to leave the hospital her doctor wanted to have her be fever free for 24 hours AND her ANC on the rise.  The fevers were gone but her ANC was holding low and steady, which caused us to remain in the hospital for the next 5 days.  It was so frustrating because Addie felt great, looked great, was eating and drinking just fine. The even stopped her fluids after 3 days because she was eating and drinking and wasn't at risk for dehydrating.  They disconnected her from the obnoxious pole we had to move around with and she could move up and about her fancy (not) hospital room.  I compare waiting for her ANC to come up to "watching paint dry".  They only ever check her counts every morning, so when we would get her numbers in the morning, even if she had a wonderful day - we had to wait until the next morning to see what they would do.  We even had one of her little friends come visit her, which absolutely made her day!  Santa came to visit Addie too and brought her a bunch of goodies AND we had some visits from a few furry friends!! Child Life kept her busy with Christmas crafts and Strawberry, her Elf even showed up to watch over her at the Hospital!  Finally on Friday her ANC came up to 100 (still not great, but better than where it was all week) and her doctor felt confident enough to let us go home.  He wanted to send her home with an antibiotic just in case what the blood culture picked up was anything - better to play it safe than sorry.  A home health nurse came on Saturday to teach me how to administer the antibiotic through her port and I gave it to her each day for the next 6 days.  Her school has been sending home the crafts they do each day so Addie doesn't miss out - which is so sweet!

 

I say GOOD RIDDANCE to the Consolidation Phase as it wreaked havoc on my girl's immune system and her numbers / counts overall. I am so proud of how well she handled it all - and always with a smile on her face.  We were set to start our next phase (Interim-Maintenance) this past Wednesday (12/13), but in order to start that phase her ANC has to be above 750 and her platelets above 75.  They did a CBC on Tuesday which revealed her ANC back down to 60 (basically 0) and platelets at 59....SO FRUSTRATING!  They will be checking her numbers again on Tuesday and if she makes her counts we will begin the next phase on Wednesday.  On Day 1 of Interim Maintenance (I/M), Addie is going to have a spinal tap and bone marrow biopsy done before they can begin her chemo.  These are to ensure that the Consolidation phase with the intense chemo due to her being High Risk - worked.  I/M requires us to be admitted for about 4 days during which she will be given a high dose Methotrexate which will infuse over 24 hours as well as a subsequent drug and lots of fluids to help flush it out.  Methotrexate can be very damaging to the liver and kidneys, hence the need for flushing.  After 24 hours they will begin checking her levels and once they get to a safe level we can be discharged.  There will be 2 weeks in between each hospital admittance (assuming we will not be delayed due to low counts prior to each admission) and we will be admitted 4 times.  I/M is typically a 2 month phase give or take any delays we may encounter.

So that is where we stand today.  Addie is continuing to fight this beast with a great attitude and she is handling it all so so well.  I still can't believe she has this disease given how she looks/acts/feels everyday.  If you follow me on Instagram you have hopefully gotten to see my girl dancing non-stop - its all she wants to do!  We are enjoying the Holidays, and though we didn't get to go to some of our favorite places during Christmas (so not worth the risk of her getting sick), we are doing our best to enjoy the Holidays at home this year with decorating, Christmas cookies, Elf on the Shelf, hot cocoa and lots of Christmas movies - with a few trips around town to look at Christmas lights, of course! It makes me so happy to see that she has just as much excitement and love for the Christmas season as her Mama. 

I ask for continued prayers that she will continue to feel good through all of her treatment, and that she makes her counts so that we can start I/M next week.  Thank you all for reading and following along on our journey, and I hope the Holiday season has been good to you all!  How is Christmas in 10 days already! I don't want it to end!! 

With Love,

Back in the Hospital + Wedding Roller Coaster!

I came on to share an update and realized I never hit publish on my draft of the entry below-woops!  I have been sharing updates and photos on Instagram so to some of you this post is way old news ;).  Even though this was 2 months ago - I want to have it documented here for us to look back on.  Stay tuned for a current update later today ;). xo
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October 18, 2017

The last 5 days have been CRAZY!  I guess we will start with some back information we were told a few weeks ago.  Due to a couple of the Chemo drugs (one specifically, but when mixed with another its a worse effect), the docs told us to expect Addie's counts (ANC, Hemoglobin, Platelets, etc.) to drop 10 days from when she received the chemo.  That put us right around our Wedding weekend (10/13/17).  Dan and I asked all 3 doctors if they recommended we postpone the wedding due to this and all 3 of her doctors encouraged us to move on with it, especially for Addie's sake as she was so excited and looking forward to it - non-stop talking about the Chocolate Fountain and the songs she wanted to dance to!  Addie, as I said in my last post has been feeling and acting amazing, has been in great spirits and we have just been living "normal life", so it was crazy to think her counts would even be effected.  On Thursday she was great all day, having more dance parties and playing non-stop.  While we were at the Rehearsal dinner she started to get tired, she felt a little warm but we took her temperature and she didn't have a fever.  A couple hours later she felt warmer and sure enough spiked a fever.  We put some numbing cream on her port (so it doesn't hurt when they access it to take blood and give antibiotics) and headed off to the hospital (standard protocol).  Her doctor called me on the way and explained that if her ANC was below 500 she would have to be admitted, but if it was above 500 they would just give her an antibiotic and send us on our way.  Her ANC turned out to be 1100 (God and prayers, I'm telling you!), so they gave her an antibiotic that lasts in her system for 24 hours and some Tylenol which immediately took her fever away (they do not want us giving her Tylenol at home to mask a fever if its going to happen).  Her platelets were a little low so they gave her some more of those, too.  It was all standard protocol, but in typical ER fashion, we sat around and waited 2 hours just for them to send up the Platelets from the Pharmacy.  We walked out of the ER at 4:30am on the day of our Wedding.  I honestly didn't think the wedding was going to happen...and I really didn't want to put Addie through it if she wasn't feeling well.  As soon as we got to the ER, my mind was pretty much made up that we would be postponing our day and we were OK with that.  As soon as we got in the car she started asking if we could still have the wedding, how many minutes before it happens and explained where she put the lollipops she had for all her cousins when we saw them.  I breathed a sigh of relief and kept asking over and over if she was sure she still wanted to go and not stay home and rest, but she insisted!  The Wedding went off without a hitch and Addie had a BLAST.  She was on the dance floor the ENTIRE time and running around with her cousins as if we didn't just get discharged from the ER hours prior! She thoroughly enjoyed the chocolate fountain and the make your own sundae bar, too - Oh and the Shirley Temples were flowing all night!  I fully expected to be back in the hospital after midnight when the Antibiotic wore off but to our surprise she didn't have a temperature!  The next morning though when she woke up she was warm and sure enough had a fever again...so it was back to the Hospital we went-only this time we got admitted because her ANC was now at 56 (down from 1100 the night before), like I said, God & prayers.

They haven't been able to explain what caused the fevers (blood and urine cultures, as well as her respiratory panel, all came back negative) but it was definitely due to her counts being low and her being Neutropenic.  It could have been any spec of germ that got on her, or piece of bacteria.  When her immune system is at 0 her body has no way of fighting any kind of infection - scary stuff, none-the-less.  They warned us well in advance (from Day 1) that this would happen and to expect it - not often, but once in a while, so we weren't in panic mode, we were all actually quite calm.  Unfortunately, this is just all part of it and now that we have a better understanding of ALL and what all comes with it, it definitely makes for much less scary situations.  The only frustrating thing is just spending our days in the hospital waiting on her counts to go back up - especially when she looks great and is acting her crazy self.  We would obviously much rather be at home where its comfortable.  She will receive her last Spinal this week for an entire month as well as Chemo, before we start Part 2 of the Consolidation phase.  Because we repeat the same chemo treatment as Part 1 of this phase, we fully expect to be here again when her counts drop in the middle of this next phase.  Its very reassuring to hear from everyone, docs, nurses, child life, etc. that this is all "standard".  Not normal per say, but normal for someone fighting ALL.   So here we wait in the hospital just waiting for her counts to go back up so we can go home.  As of today she has been fever free for 48 hours which is awesome!  She's acting herself, wanting to wear clothes and PJs and not the hospital gown, is hungry and she keeps complaining that she is still hooked up to her IV (fluids) because she wants to get up and dance, LOL. 

Prayers please that we will be able to get out of here by the weekend so we can have some fun with Fall festivities!  Thanks for reading and for all the wedding well-wishes!  I'm just so happy that Addie enjoyed herself so much and our families and friends all got to celebrate something some good and positive for a change!

With Love,