Counting Down!

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One week from today is Lulu’s LAST dose of chemo! 5 days after will be her port removal and hernia surgery. WOW, It’s really almost here. I wish I could report an uneventful week, but never a dull moment ‘round here …

Jimmy got a horrific flu, which was passed on to Max. I’ve never seen either of them that sick before. And why is it that boys can’t seem to hit any sort of receptacle, be it potty training or vomiting? He erupted like a volcano, all over himself and me, in every nook and cranny of the bathroom floors, walls and grout, while I looked over at the view of the pristine toilet. We spent the night on the bathroom floor together – after I cleaned up the first round and he got his rhythm and aim going! He got to be a downright expert, getting lots of practice every 15-30 minutes for over 8 hours.

While that was bad, we knew we had to protect Lu from getting it. Since I was likely exposed and Jimmy was recovering, I stayed home with M. This is one of those times I wish we had an adopt-a-family program. With nowhere else to take her, off she went to a hotel with Daddy for 2 nights. They had a great time though, and Lulu swam like a fish in the pool as often as possible. 4 days later today, Max is back to school, albeit a waifier version of himself. Seriously, the two skinny guys get the flu and here I sit with my extra lbs of what I’m calling ‘stress weight’? What’s the saying, I’m one stomach flu away from my goal weight? Ok, not really worth it… the gym awaits.

The good news is that Lulu is doing really well, and fingers crossed she will not get this flu so she can get through this last leg of treatment and surgery smoothly!!! She just LOVES homeschool. Her favorite subjects are Recess where she plays outside in the snow, Math – on a great app for addition and subtraction, Reading – her favorite book series Ivy and Bean, and P.E. which consists of chasing mommy around the house and scaring each other into screams by flying out from around any hidden corner. Oh, and Lulu told me Jimmy got to ‘sub’ the other day while I was working. I had to chuckle when she told me about her favorite new class called OPEN GYM. Apparently, this was free time, where you can choose whatever you’d like to do; Lulu made art and Daddy took a nap.

Cheers to 3pm March 6th. Keep your ears open for that bell, if you listen closely, you just might be able to hear it!

Love,

a.l.l. of us

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Quick update

 

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Hello Friends,

Just a quick update to let you know all went well with the Immunoglobulin transfusion!  Besides a horrific tantrum that came out of nowhere (caused by combo of bad reaction to benadryl and steroids), she got through it beautifully.  Praying for no long-term effects.   She’s bounced back remarkably, as only a child can, and the fevers have subsided for now.  She was even able to take a few minutes to play in the snow Valentine’s Day.  Notice the heart around her?  I feel it is a good sign of things to come, as well as a symbol of the love that surrounds her by all of you, our friends and family.  

We are going to keep her in a bubble, or bubble-wrap, or flea-dip her in antibacterial gel for the next 3 weeks, but  WE CAN DO THIS!!! 

Much love, 

a.l.l. of us

So Close and Yet So Far

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We’re SO close to the end, less than 4 more weeks of therapy, which makes the events of this last week that much harder.  Since I always like to get the bad news out of the way first, I’ll start with that.  It’s been an eventful week with lil Lulu.  We ended up in ER again, this time with 103.7 fever, headache, vomiting and wicked-scary cough (the biggest concern with leukemia patients since this could turn into pneumonia).  Our good friends took Max so Jimmy and I could both go in with her.  You know the drill by now: total panic and desperate crying from Lulu when she finds out we’re going to E.R., the usual tests, prodding, poking, fluids etc. … We ease the pain and much as we can, and ever since the infamous 4-nurse and 6-missed port pokes, we ask for someone to come down from H.O.T. to access her difficult port.  We were SO lucky to see our dear Linda come down.  This is the nurse that Lulu once told me if she could have another mommy, she would want it to be Linda.  It was like seeing family when she came and helped tremendously.  Hours later, her counts came back high enough that we could leave for that day.

Day 2, fever returned.  I took her in so Jimmy could stay home to protect Max from seeing his sister go through it all.  Repeat of above plus heightened anxiety and, luckily, another great nurse from H.O.T.  She was additionally given Tamiflu and antibiotics.  Her fever finally seemed to break.  We left at 11pm only to return to clinic the next morning.  This time for surgery consult (for hernia and port removal), chemo, bloodwork, and nose swabs.  That’s 3 days in a row of port-poking and rollercoaster anxiety.  I must tell you though, that as petrified and Lulu has been (literally shaking and crying with fear at times), she always pulls it together and finds what we call her ‘brave spot’ to get through the actual procedures.  She truly amazes me and I continue to be impressed by her sheer will and tenacity.  She even seemed to be bouncing back and so much better that afternoon.  We also had an unexpected visit from Bo’s mom Annika, which brightened our day immensely!  She and her crew were donating a $10,000 check to the MACC clinic from The Go Bo Foundation.  We just love them and the work they are doing.

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(Elephant to color on from Annika)

Long story short-ish, we’ve found out she has Human Metapneumonia virus and, as the name would indicate, one that can turn into pneumonia.  We also found out that her IGG (immunoglobulin – important component of the immune system) is low, which may be why she’s been getting sick more often and severely.  She will need and infusion of this, which can be risky.  Allergic reaction is possible (we NEVUH want to go through that again) and because the product is harvested from over 10,000 blood donors there is risk of contracting serious viruses.  Of course, we’ve consulted with the nurses and doctors, read the information and feel this is a necessary risk.  She will receive the infusion over 4-8 hours tomorrow.   Please keep her in your thoughts.  We are so close to the finish line!

Which brings me to the good news that’s really great news: March 6th will be her VERY LAST DOSE OF CHEMO!!!!!!!!!  That’s right, a mere 3 weeks away!  She will have a highly anticipated day at Children’s where she will ring the bell, signaling the end of her treatment.   We’ve heard just a few others ring it, and it’s the best sound you’ll ever hear.  Both Jimmy and I get choked up just thinking about it.  She is scheduled to have her hernia surgery and port removal on March 11th, barring any illness or low blood counts.  The light – no, the rainbow— at the end of the tunnel is brightening, just have to move through these last storm clouds.  We have decided to homeschool her until she is finished with therapy.  Her doctors and teachers concurred, knowing there is strep and flu prevalent in the school right now.

The first year off therapy she will have monthly blood work and checkups.  Year 2 will be bi-monthly, I’m foggy on the rest, but I believe years 3-4 will be every three months, year 4 will be every four months, and year five will be every 6 months.  After year 5 we use the word CURED.  Have you ever seen a prettier word?

I’ll try to keep updating you in shorter spurts over the next few weeks.  Thank you for your continued support, love and good juju for lulu — and a.l.l. of us.

Out Like a Lion …

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(pic above: our 2-year holiday card)

Out like a Lion …

2013 left us with a microcosm of the ups and downs of the year wrapped up in one day. Looking back, it seems fitting … but I’m glad that it’s come to a close. New Year’s Eve was our 13th wedding anniversary. We’d hoped to celebrate, starting the day off in an extremely promising way by closing on a house in the neighborhood and school district we’ve been looking in for years. My friend took the kiddos so we could steal away for a romantic brunch, but both Jimmy and I were preoccupied and restless. Lulu had seemed a bit under the weather, and our beloved kitty Gizmo was recently diagnosed with diabetes. We finished eating and raced home, hoping to catch a little more time together. Fate had other plans.

Gizzy, ‘Drool-monster’, ‘The big Schmoe’, was lying on the floor stiff and almost lifeless. We raced him to the vet, but his breathing was shallow and he was barely moving. He did perk up enough to give me a couple of sweet nuzzles which I will cherish. You see … I was his special person (and don’t tell Sugar, but he was my favorite kitty). We left him with the vet after getting a call that Lulu had a fever. Off to the hospital with both kids we went. We were so happy to see Lulu’s usual nurse Bonnie who is bestowed with magical skills, I swear. We underwent the usual barrage of port access, blood draws, IV fluids, meds, and the dreaded nose swabs. Lulu was really anxious since we’d had quite a few unexpected trips in recently. She was having a difficult time shaking a flu she’d gotten, and it kept rearing its ugly head in the form of fevers. We kept quiet about our kitty, so as not to upset her any further. After only a few hours we got the green light to go home, with permission to give Tylenol for 24 hours but bring her back if she fevered after that. It was exhausting for everyone, as it always is and we were so relieved to get home. The dreaded call soon came in from the vet; Giz had left us for the great fields of catnip beyond. It seems almost silly to be so upset over a little furry friend, but that cat was a part of our family for almost 16 years. It hit us all SO much harder than we expected. Happy New Year. We waited until the next day to tell the kids and we all cried openly together, huddled on the family sofa, telling stories of this character whom had touched our lives more than we knew. It turned into an unexpectedly bonding moment for us, so we took that from it.

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During this time we had water damage to our almost former house after a pipe burst in the attic, literally raining down over the floors below. I really thought I might lose it! I just kept saying “no, NO, NONONONO!!!!”, like machine-gun fire. We also had a tub overflow and damage the soon-to-be new house flooring within the week. It seemed we were on a Lemony Snicket-driven course, accompanied by the bitter cold of the winter. Interestingly, it didn’t take us down. I didn’t lose my mind (really, I swear!). Oh, it had its moments, but there were a few gentle reminders that came in to help put things in perspective for what they were; just a series of unfortunate events. A friend (whose granddaughter had also been through leukemia) gave me some pivotal advice when I told him how hard it was every time we had to go back to ER. He said it’s difficult because it’s a reminder of just HOW FAR YOU’VE COME. What a gift those words were.

We have indeed come so far, and it’s really not that bad. Our little friend Kate and her family have weathered a much harder and unrelenting course through her A.L.L. , and she wrote on her Caring Bridge about a blog entry I’d made in 2011 that had helped her through a trying time. That too, reminded me of how much better things are now … and what a blessing our family, friends, and life are. We were recently taped for a video segment on a new cancer drug, and asked how things were going. Without hesitating, Jimmy said “Great!” and meant it. After a small beat, I thought … he’s right. Things are great. We are all ‘healthy’ and Lulu is nearing the end of her treatment. We are weathering the storms and have seen many rainbows between the clouds.

Spring will be a fresh start for all of us. We hope and pray it comes in like a lamb!

Love, a.l.l. of us