Wednesday, January 11, 2012

The days are long, but the years are short

It's been too long since I've updated about little Tenley. 

Well, we had an awesome two weeks at home.  It was so great and easy going... nothing to hook up to her central line, just a couple of oral meds a day.  Yep, that I can handle.

We did have one little blip... that central line of hers started to act up yet again.  This time our home health nurse (oh, we found one that we love!) caught it before it actually had a break, he saw that it was weak in one spot... so we made the trip to Primary's and got it all taken care of by the I.V. team.  I am learning through trial and error what works best for us...

Dylan the home health nurse and I.V. team are on our good side.

I was so worried Tenley was going to get a fever at home.  Taryn caught a bug and had a yucky runny nose with a cough and a fever the second day after Tenley was home... so I thought for sure we'd be heading right back to Primary's once Tenley caught the bug.

She did catch it, but never once had a fever.  It was a miracle.  Really it was!  Her nose was a mess, and the cough was full of phlegm, but the fevers never hit her like they did Taryn.

...until yesterday....

Yesterday we were admitted to start round 3.  The day started off with a visit to the clinic and then to the RTU for her bone marrow aspirate and lumbar puncture.  These procedures are done after every round once her counts have reached a certain number to check and make sure she is still in remission.
- which means there are no signs of any cancer cells from what they can see -

Everything went nice and smoothly, she came out of anesthesia just fine, and we made our way up to our room in ICS, which happens to be the same one we had last round.

My mom and Lisa helped bring everything in and put things away.  Then Tenley decided she was tired and I rocked her to sleep.  She would not let me lay her down in the crib.  "So we are back to this little game?" is what I thought, but I figured she knew where we were and wasn't going to let me set her down anywhere... not quite yet.

After a short nap (for both of us) I woke up realizing I had been drooling on her head... oops!  Then I put a movie on for her while I kept working on hanging things up in her room.  After awhile I realized she was being pretty quiet and looked pretty tired and worn out.  I decided the room could wait, and I needed to keep holding my baby.  When I picked her up she was burning hot.  I called the nurse in and sure enough she had a fever.

To consider a temp a fever there, it has to be at least 100.4.  They check everything in celcius.  So 100.4 would be 38.

She was 38.7

After waiting for blood cultures to be drawn (which they do everytime they get a fever to check for any infection that could be growing) and Tylenol to be ordered, I felt like she was getting even hotter.

Sure enough, I was right.  The nurse checked her temp again and it was 40.2
Bad bews... I knew that was a bad number.

For us farenheit people that is 105.4

I was in a total panic!  How do we get it down!!!  We had already given Tenley the tylenol about ten minutes before, so we got out ice packs and cold cloths to put on her head and body.

She felt like a fire in my arms, and I really was a mess stressing over all her little body has gone through and is about to go through.  Thankfully the nurse that was taking care of us is one of my favorites and I trust her completely.  She has worked there for over ten years and she is the real deal.  She kept telling me that all of Tenley's vitals were good.  Her blood pressure, oxygen, and everything else was looking good, so panicking wasn't neccessary.

After 20 minutes or so we checked her temp again, and it was down to 39.1

I felt like I could breathe again.

It jumped up a little and then would go back down, and until she fell asleep around 11 that was how our evening went.  Me holding her with ice packs and damp cloths, praying that this would subside, and not cause us any more problems throughout the night.

My Aunt and Uncle came along with their daughter and her husband.  My Uncle gave Tenley as well as myself blessings.  I prayed that I would have faith in his words and let the power of the preisthood take over and work it's miracles. 

Finally at midnight, after we had both fallen asleep in our own beds, her temp was back to normal. 
I am so thankful we were there... already admitted to the hospital.  If a fever ever does occur at home, and if it lasts at least an hour, we have to bring Tenley in immediately.  So to have already been there was such a blessing.

And to have an around the clock nurse that was so on guard and prepared to come in and check on Tenley every two hours, making sure she was doing well, checking her temp regularly, but also letting her get some good sleep. It was a huge relief to me.  I felt like I could actually fall asleep.

and sleep we did....

So that was day 1 of round 3.

Round three actually begins tomorrow with the first dose of chemo.  It will last 5 days and Tenley will be receiving a much higher dose of a drug called ARA-C.  The last two rounds she has been given this same drug, but it has been increased to more than 4x it's strength for this round.

Today was less stressful, and Tenley kept a normal temp... but I could tell the area where they did her BMA/LP from yesterday was painful to her.  She did not want to walk, and if she did, she was hunched over and only took a few steps.  Seeing her walk in pain brought back a flood of feelings from her being diagnosed.  Anxiety rushed over me as those early days and thoughts came back.  Such an awful feeling....

I am so glad we are halfway done.  I never want to relive those first few days of fear, worry, and heartache that came with it.

We have made it this far, and will continue to fight... this I know.  Once again, Tenley is my hero and I will forever be cheering her on.  These days may feel long and seem to never end, but the years of young children pass too quickly and I will not let myself take them for granted.

She is here, and that is all that matters today....  

(my pictures aren't moving to the right spots... so they get to all hang out here at the bottom!)

getting ready to go get her line all fixed!

waiting... and more waiting...

this is the blip I was talking about.  

All fixed!

waiting in clinic

our home yet again for the next few weeks...

This is how awful it would be without all our wall art!!

- I'll post more pics, but it's late and I am T.I.R.E.D!!-


The Andersens said...

Wow Shawna, she is so lucky to have you... and you her! You're an amazing cheerleader!!!! She looks so darling...she's in our prayers.

Jacci said...

Shawna, You probably don't know me. We went to olympus together. I just want you to know that My family is praying for you and your sweet little family. You are an amazing person, and a really great mom. I hope all turns out well for you all.

Alexis Kaufusi said...

shawna! every time i read your blog i cry. going through everything tenley has gone through at 21 is one thing. but going through it at her age just is unimaginable to me! she's such a fighter. i don't know tenley but i love her and her little spirit. she's inspiring to everyone fighting battles similar to hers and even those who aren't. we're praying for you guys!
love alexis

Natalie in Sparks said...

wow I am so glad her fever came down. That is so scary! She and your whole family are still in our prayers!