Half Year Mark.

At The Hole In The Wall Gang Camp

Six months of chemo free days. We had the best weekend to enjoying it at The Hole In The Wall Gang Camp in CT. This was our first visit at this camp and we are hooked! Friday we arrived at dinner time and settled in. Our Saturday was action packed, I started the day off with some yoga, met the kids and our wonderful Family Pal for a yummy breakfast and then some fishing, I took Iza to record a song in a fancy recording studio ( I can't wait until we get out CD!), Magi did one also, Mimi was loving fishing she would have stayed there all day!  Before lunch Magi and I had some time to squeeze in Archery, she is a big fan and asked for a bow an arrow at home, we might have to hold off on that just a little while. After lunch we rested up and dove right into some arts and crafts, all 4 rooms of it, it was a small heaven for us. The Tower was next on our list of things to do, a giant wall to climb, all three girls got their gear on without hesitation and waited their turn. All loved it (including me) the bonus was the long Zip line to get down from the tower, Magi chose not to go down the zip line and got lowered down, although said later she wished she "flew". Somewhere there was yoga for the kids, more arts and crafts, Dinner followed by lots of singing and dancing. The girls have lots of new songs to sing now.  The most awaited event was stage night. All the kids did such a great job getting out there and showing their talents, making us laugh, sing along and answer knock-knock jokes.Iza sang, Magi "played" on the piano, and all three did a fancy fashion show in prom dresses taped on with duck tape! Sunday we got up bright and early so we can enjoy every bit of camp before we had to leave. At breakfast all the Moms got special treatment since it was a mother's day at camp, it was so sweet, the dining hall was decorated in rose petals. All the kids came to us with cards, flowers and gifts, it was a very special day! During the whole weekend families were photographed by Hallmark Institute of Photography, before we left we were presented with a framed picture and a CD with images, the above picture is one of them. I am sure I am forgetting a bunch of things but as you can see we had an amazing time. Iza and Mimi are looking forward to spending time here as campers later on this summer, Magi has a couple of years before she is a camper.

Thank You The Hole In The Wall Gang Camp, Thank you to all the staff, our awesome Family Pals! 

Treatment Tree

Mimi had her monthly clinic visit after school Wednesday, all five of us went, we like to add chaos to everyones work day. The girls love going to see everyone at clinic. Mimi is well, not much to report, still dealing with dry skin and scalp but we got it under control with creams and shampoos. Hopefully when it starts getting nice out it won't be such an issue.

Counts 2/8/12
WBC - 5.3
Hgb - 13.3
Platelet - around 200
ANC - 1900

While at clinic got a wonderful surprise from Lisa (nurse) she gave Mimi a gem Tree filled with a collection of Swarowski crystals. Each bead representing a procedure or event while at clinic, such as beginning treatment, transfusions, port access, surgeries and so on. It is a gorgeous tree representing each child's unique journey through treatment. A big thanks to Griffin's Friends for sponsoring that and to the nurses at clinic for putting their love into it!

Mimi's Treatment Tree

Clinic Day

I picked the girls up from school and informed Mimi she has a clinic appointment right after. She replied with a loud "Why?! I am done my port is out!" I told her we are just going for a finger prick to check her counts, again "Why?" To make sure your blood is doing what it is suppose to, we will got every month for a while. She seemed okay with that answer but then said "If it doesn't look okay then I have to get a port again? and the hospital?" Iza jumped into the conversation and said "We will just pray and wish your blood is always good!" Yes! Yes, We will!

Mimi has developed a rash sometimes hive looking the day after surgery which seemed to get worse over the weekend but after a visit to the pediatrician's office and a script for Hydroxyzine it seems to be under control. Her stitches look great, they are dis solvable do we don't have to go to get them removed. Everything checked out well so we are good until early January!

Counts:
WBC - 8.
HGB - 12.8
Platelets - 223
ANC - 3700

It's OUT!

Mimi was so excited to go into the Operating room, I took a picture of her because it was funny to see a kid so excited. At one point a nurse asked me if she will need anything to keep calm, she looked at her and said "Never mind..." We borrowed Dziadziu's IPad to play with and she got spoiled not with one but two Child Life specialists! It was so great to have them there, Betsy has been with us for a big chunk of this journey it was so nice to have her at the De-PORT-ation. Mimi went in smiling at about 11am and around noon I was called in to post-op to wait for her to wake up. She woke up a bit groggy and with a rash, a reaction to either tape or cleaner they used in the OR but it seemed to clear up. Once she was able to drink and sit up off we went to meet her sisters and daddy who brought what she asked for: munchkins and Big Giant Marshmallows. We asked her if it is weird having the port out an she said no.

Later that night Mimi left a letter to the Port Fairy who also left her a note and a treat for all the girls. Apparently the Fairy got spooked by our dog and since she was flying with the tooth fairy that night anyway she left the treats on the bathroom window where Mimi found them. The girls all got some fancy chap stick, nail polish and what is a fairy treat with out some green money!

BIG day tomorrow!

Mimi's PORT is coming out!

She has known that once she no longer needs chemo the port will come out. She also always said she wanted it out before her 7th birthday. We met with the pediatric surgeon and although he wanted to wait until after her birthday, so she won't be sore for her birthday, she insisted she wanted it before.

Tomorrow, December 1st, Mimi is scheduled in the operating room at 11:30am. She will go under general anesthesia and the surgeon will try to use the same incision they used to insert the port, for minimal scars. The surgery itself should not take more than an hour. Mimi is hoping to keep her port read below to find out why...

"My Port" by Mimi, almost 7

"What is a SuperSib" by Iza

Officially OFF Treatment.

2 years, 2 months, 26 days

over 40 days inpatient

over 75 Clinic visits

Bone Marrow biopsies and aspirations

Lumbar Punctures

Blood and Platelet transfusions

Numerous Xrays

Multiple CT scans

MRIs

Just one Nuclear Bone Scan

One portacath

A very long List of Medications

She did it! We did it! I remember over two years ago looking at 4 and a half year old Mimi laying in a huge hospital bed as she was sleeping and crying thinking that she will have to fight until she is almost 7! It seemed like a life time away. There were definitely scary days that felt like the clock never moved and daylight was not coming fast enough. We enjoyed every good day, and made a bad day better. The second counts were just over the "good enough" mark we were out the door doing something and making every moment count. We are done with treatment but we are a part of a club, a club we didn't ask to join. It changed our lives not for good or bad, just changed.

Tonight I was putting the girls to bed and Mimi asked

"Is tonight is really the last night I will give her a pill?"

I said "Yes."

"So that means tomorrow I can have a LARGE glass of milk RIGHT before I go to bed?!"

She has been unable to have milk at least 2-3 hours before she has her nightly chemo and that has been the hardest thing for her. Not the giant needles in her chest or the crazy steroid days... go figure! As I was walking out the room Iza looked at me with sad eyes and said "Does that mean tonight I am done being a SuperSib?" I assured her She will ALWAYS be a SuperSib! Everyone went to bed happy.

Q&A

Is Mimi's cancer gone? Short answer YES, It has been gone and the last two years we have been doing a lot to keep it from coming back! Mimi went in to remission, meaning there was no longer evidence of cancer cells in her body, soon after we started treatment. To keep it that way she continued with a long maintenance treatment to keep the cancer from returning. This included, daily chemo at home, monthly IV chemo, and chemo administered into her spinal fluid to decrease the chance that leukemia invades her central nervous system.

What now? Starting November 9th Mimi will be going for monthly blood draws to make sure her blood counts are what they should be and that there is no evidence of cancer cells. Later on they will be bi-monthly until eventually once a year for the rest of her life. Along with other routine check ups such as Echo cardiograms, to check her her heart for possible damage caused by chemo.

Sometime soon we will also have a date to remove her portacath which will be another huge milestone!

Also she will be closely watched for any late effects due to the intensive chemotherapy she received over the last two years.

Thank you for being part of our little army whether it was for 5 minutes of the last 2 years, 2 months, 26 days or the whole ride. Thank you for all the shoulders I got to cry on, for taking the Iza and Magi for fun days restoring "normal", for the coffee and tea deliveries to the hospital, for dropping what you were doing because it was a good count day and friends needed to play, for understanding things needed to get cancelled due to low counts, for understanding and for trying to understand... I can go on forever. I am blessed to have met so many people and I hope to continue keeping our little army going as we keep Leukemia AWAY...