finishing

I got so busy that I forgot to report what happened after my previous post.  Natasha ended up in the hospital for 5 days.  Every day the plan changed.  From the beginning the thoughts of the doctors differed.  One told us that she could be infected with a serious bacteria and that her port (surgical line with access to her blood vessels) would need to be removed.  Another told us that it was probably just contamination and that it was no big deal.  Nevertheless, we had to stay in the hospital and just wait on the lab results.  I thought a hospital stay would be easier if the child was feeling better, but I was wrong.  Trying to entertain Natasha was so hard!  She felt OK and her numbers were good so she didn't want to just sit in a bed. Abigail came up some of the time to help entertain but it was stretching my abilities.   

 I managed to convince the doctors to let me take her to the hospital play room.  What a blessing! She had to wear a mask but it saved us both from frustration.

 After a week of ups and downs we still had no answers.  We only knew what antibiotic was working best on the bacteria.  Ironically, it was the one that she got the first night we took her to the E.R.  We were finally released with a week of at home IV antibiotics.  Whew!  Dodged a bullet!

Video

We made and posted a video of our twins' journey so far on youtube.  The link is:  http://youtu.be/zmFOg7SpFas

We also have a fundraising site at www.helpourtwins.com 

100%

100%

First

We actually had a first last night.  When Natasha was in the ER on the 17th they drew blood cultures like they do every time.  She got antibiotics that last for 24 hours.  we just need to make sure that she does not have a fever again after the 24 hours is up or we have to go back to the ER for more.  Needless to say, we were delighted when, on the 18th, there was no fever after 10 pm.  Unfortunately, a good night sleep was not in the cards for us. 

About 12:30 I heard my phone go off. My ringtone for the children's hospital is "how to save a life",  so at first I wasn't sure if I was dreaming or if my phone was actually ringing.  When I got up I had missed the call, but I called back and spoke to the ER doctor.  Her blood cultures from the night before had grown out with "gram + rods".  That's hospital talk for "bad news, come in right away". We threw a bag in the car and then added Natasha.  It was one of those long panicky drives that I hate.  Josh stayed with the kids so I was alone with that "what if" fear that comes from having a kid with cancer. 

Upon arrival, we went straight up to the cancer wing where they were waiting for us.  We were admitted immediately and her port was accessed and filled with antibiotics.  When we finally got to sleep we just crashed.  This morning she is still fever free and has a ton of energy.  You would never know she was sick.  Her blood levels look great but her output is lacking.  Hopefully we will be out by tonight or tomorrow.  Fingers crossed...

Again

Between both of our girls we have probably been to the emergency department at the children's hospital 30+ times this last year.  We are instructed to bring them up every time there is a fever of 100.4 or more.   We know the routine so well that we know what drugs they will give and what will happen depending on the lab results. 

so here we are on the 17th of april with our little tasha who ran a fever of 102.7. of course we rarely run said fevers until after 8 pm. so here she is at midnight trying to sleep while they are giving her antibiotics. I can't wait until the cancer treatments are over and I don't have to rush to the children's hospital every time there's a fever.

Interim

We just started a new course called interim maintenance.  It's rough, but still a step down from our last phase.  We started today with a lumbar puncture  which is when they put her under and add chemo to her spinal fluid.  She's had about 12 of these so I wasn't too worried.  The anesthesiologist did give her a drug we haven't had before and she reacted horribly!  She got really restless and nauseated.  It's taken a lot of zophran and some begging to get her to eat but she finally did.  I am so grateful that our children's hospital is so good to let them order whatever they want-- even if they're outpatient.

Rub-a-dub-dub

I am so excited because I got to give all 3 of my little ones a bath today.  Due to infection or possible infection, Natasha has been accessed (her port still has the needle in at all times) and getting antibiotics for almost 2 full weeks.  Somehow a sponge bath never makes me feel like she's very clean.  I never thought I would be this grateful for an ANC  of 600.  She had a 0 for a week.  We are so glad that she finally has some immunity.

Funny

I have to share this because I am still laughing. I am in the hospital with Natasha and I need to get pajamas on. My clothes are stored between the door to the hall and the bathroom. The nurses hardly come in at night, so I thought I could be lazy and quickly change my shirt. As I start to put on my hoodie I hear the door starting to open. I had forgotten midnight vitals! The head opening of the hoodie is tight and I was struggling to get it on. I made a split second decision and tried to run to the bathroom. I couldn't see and the door was closed so I ended up just sort of running around trying to find my way to it. Tasha's poor male nurse entered to see me in my bra with my hands halfway suspended in my hoodie running around in crazy circles like a chicken. Awkward vitals. VERY awkward vitals. I am quite sure he is scarred for life.