the "new" normal at home continues...

Days 21 - 29


Comprised w/ assistance from Fern/Stacy/Mom. . . .


We have all been home for over a week (nearly 2 weeks) and it has been pretty uneventful.  Annie has been in good spirits and seems to be for the most part back to her normal self (except for the missing hair).  Oliver and Tich have been at camps, etc. for part or all of the day (not to mention, more trips, sleepovers, etc.) and Annie has been hanging at home waiting for their return.

Oliver & Tich w/ Lutkowskie!  Thanks for the trip!!!

Last week she had what we hope will be her last chemotherapy treatment of induction (not the last chemo, just the last one of the first phase).  Last Friday's chemo went well and Annie tolerated everything like a straight A patient.  She was asking for McDonalds when we left the hospital but since we drove past a Wendy's agreed to slum it there.




Today (July 22) was day 29 of treatment- a big day.  We backloaded her on food and drink last night in the form of taylor ham and chocolate milk after 10 pm, because we knew she wouldn't be able to eat this morning.  We got to the hospital around 8:30 and Annie had her port accessed, bloodwork done and started on fluids.  Her biggest fear it seems now at the Valerie Center is not the chemo or  bloodwork, but the TAPE.  Yes, the tape being a bandage that is put over her port access.  Hopefully she gets used to it quickly because it is going to be something that is stuck to her pretty regularly.   Luckily when we apply the emlacream (numbing cream) at home prior to the visit we were advised to use "Glad Press and Seal" instead of the bandage.   Yes, what you use to preserve your leftovers.  We use it on our child.  Luckily it is not as sticky and comes off easily or we'd have to deal with TWO sessions of crying during tape removal.

who knew??

So today Annie was scheduled for 2 procedures.  First was a spinal and then a bone marrow draw from her hip. The marrow was removed and will be tested for leukemia.  As explained earlier, we are looking for a negative result on the MRD (minimal residual disease) test.  Which means they cannot detect any leukemia cells in 1 in 10,000 .  She is not a fan of the "sleepy medicine" however and was not happy to have to go into that room.  Thankfully, she woke up happy, and we knew she was okay, because she was asking for food. . . ..  

Waking up with her selection from the array of available snacks.  Thanks Valerie Center!!

After the potty and some snacks, they removed the dreaded tape, but she was able to pick a prize from the treasure chest and we left.  So strange to just walk out after being inpatient for 3 weeks.  We now wait for the results of the test, and those results will determine the next phase of treatment.  Our hope is that she is in remission and we can move onto something called consolidation (we think that is the name, again, the doctors do not want to get too far ahead of the game until they know the results).


So activities at home include cleaning and wiping down all surfaces with antibacterial wipes multiple times a day and lots of hand washing.  We also do some creative in-house fun. . . . .

even superheroes have to break for lunch.  thanks, Yelpos!

The only place Annie has gone since she was home was to California Beach Hut to buy a new swim cap.  She entered on orders not to touch a thing, and picked one with cat on it and will it when she swims each day. 
Aunt Therese came and cut her hair into a cute bob, which has helped with the constant thinning that's happening.  The swim cap helps so we don't have to sunscreen her head.  She even had a swim lesson this week from Kelsey Dugan (remember Heather, she has ALL and visited us in the hospital?  Kelsey is Heather's sister).  Annie was a so-so student, but Kelsey did so well, that Annie may be the first student of a future teacher:)

deep end!!

Annie trying to ignore the pool toys.

So we continue to sanitize and hang out. 

Kids hanging in Tich's new room!!  Thanks to all the designers!!

And, our yard is getting lots of needed attention, which staves off the boredom.
There would be a picture of her new obsession. . . .Uncle Jim's turkey, but she ate it all. . .


So fingers crossed and prayers for the results on the bone marrow.


Again, thanks to everyone for all your positive support, prayers, help, gifts (Annie is still complaining that her birthday is weeks away??), food, company, messages, etc.