No more Tubey!

Today Ava had surgery to remove her portacath.  Ava has had her tubey (that was the name for her portacath) since December 10, 2011. I remember that day all to well when she went in for surgery and they placed a foreign object into our then 2 year old little girl.  Today she had the same surgeon that she had back in 2011, and he removed the port.  She has 2 small ouchies, one on her neck (where the catheter was) and one where the port was placed in her chest. It was a quick surgery and it was successful.  We got to the hospital at 630 am and surgery began at around 815am and we were home by 1030am.  She will be sore for a few days, it will feel like someone punched her. :( But it is out, no more foreign object in our now 5 year old little girl.  We were happy to see the port removed and have our daughter’s body whole again.  So now we relax and she will get stronger and better everyday.

Thank you for your continued prayers and support.

First OT visit

Today was Ava’s first OT (Off Treatment) visit with her doctor.  Of course I had a list of questions, and he answered them all and then some, she has a wonderful doctor that always makes her giggle.  We got to see our little friend Kate at the clinic she is so sweet, she was diagnosed around the same age of Ava last year.  Please visit her page to show some support and love as they are still in treatment – Prayers For Kate

Ava’s check up was good everything is as it should be, and we are still a go for her port removal surgery this week! Ava’s ANC was really high on the 26th it was 6000 (as she had her ouches form a fall and a bad cold she was dealing with), they checked her counts today and they lowered (as I thought they would because her ouchies and cold are on the mend), her ANC is now 1750, so still good for surgery.

At the clinic, the nurses got together and sang Ava Happy 5th Birthday and gave her a present, as tomorrow it Ava’s 5th Birthday.  We can’t believe she will be 5 tomorrow, this will be a big celebration for us as we celebrated her 3 and 4th birthday with chemo, and now she is chemo free!  A chemo free birthday!!!

We don’t go back to the clinic for another month, and that will be just a check up and count check again.

Happy 5th birthday to our beautiful and amazing little girl!

Thank you again for all your support and thoughts and prayers!

 

Normal?

So today Ava took a spill in the parking lot and hit the pavement hard face first. :( She somehow landed on her chin and not her forehead. So I grabbed her and all I seen was blood and tears and my mind raced to bad places. Thankfully we were still at her preschool and her teachers all helped me clean her ouchie and put an ice pack on it. They were so calm with her as they have helped so many other children with ouchies and I guess it’s normal for kids to get banged up. I called her oncologist in a panic as I didn’t know what her counts are and worry about infection. They said I could go see her pediatrician but we haven’t seen them in over 2 years, so we went to her oncologist for an exam. She didn’t need stitches and her ANC was high in the 6000, which is high for her but she had been off chemo since the 21st. So now I worry if that number is to high does that mean a fever is coming? Her doctor told me that her ANC is normal since she is coming off chemo. We did get good news that she does not need her port accessed next week as they are switching her to a liquid medication to take on weekends called bactrim.
When will the worry stop? I guess once her port is removed I won’t worry as much, but I will have to deal with this fear somehow. I will have to figure out what normal is, as I was so used to getting her counts checked and watching her for anything that is not right. I have no idea what normal is and pray that over time we will figure it out. But for now I will nurse my baby girls ouchies and say a prayer that her ANC only means her body is getting better.

March 21 – Done with chemo!

I can’t believe March 21 2014 is here, it is a bit surreal to me as today is the day Ava takes her last chemo pill (the 6MP chemo pill that she has taken every night for the past year and a half) and officially completes her long 2 1/2 years of chemotherapy.  No longer will she have to take a pill at night, or have to wait 1 hour to eat after taking the 6mp pill.  No longer will I have my checklist of the medications hanging on our fridge and checking off each day that she took her meds.  For 8 cycles since her chemotherapy started back on Dec 9, 2011  I have used a checklist like this – this photo was her protocol to follow -AALL0331.  There are many different protocols out there for kids but this was hers.  Very glad to take it off the fridge today!

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So whats next, Ava will go to her oncologist at the end of the month for a CBC count check, and she might need to get her port accessed one last time to receive Pentamadine (this is not chemo).  And at the beginning of April she is scheduled to have her Port removed!!!!  Our OT (off treatment visits), will be monthly visits to the Oncologist for the first year for a count check and check up.

So tonight at 9 PM Ava will take her last chemo pill.  I have so many emotions go through me now, I am happy, excited, and scared.  I will have to learn to manage my fear through time.  Ava is a fighter and now a survivor, she beat Cancer and won.

From our family to you – Thank you for all you prayers and support throughout this journey over the past 2 1/2 years.

I will be updating this blog with updates and her progress on her count checks.  We ask that you still keep Ava in your prayers so that she remains healthy.

I am off to do a little dance, please do the same and dance around and celebrate Ava’s fight and winning!!! :)

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Bye Bye Steroids!

Ava took her last Steroids pills today that she will ever take as ever treatment nears to the end.  Steroids were amongst the worst part of her treatment, as once a week each month my happy energetic child was robbed of having fun because the steroids made her so emotional, edgy, flustered, mad and sad not to mention the bad leg pains she had.  I wrote a blog about evil steroids while back you can read it here: http://wp.me/p23qPB-af

So this morning she took her last steroid pills!  Now we only have 2 more doses of methotrexate pills and 11 more 6mp pills to take and she will complete her treatment.  I can’t tell you how excited I was to throw out that  Dexamethasone pill bottle this morning!

Its going to be a good day :)

11 more days of treatment left.

Cycle 8 – Last Cycle!

March 2014 seemed so far away back in December 2011, I thought to myself back then and over the past few years how will we get through this as a family, how will Ava handle all this chemo in her little body?  Well its finally March 2014 and after a 2 day delay because of Mother Nature, Ava started her last and final cycle in her chemotherapy treatment today.

Today March 5, 2014 we started our day early this morning at the clinic where she received a poke in her tubey and we waited for her blood counts.  Her blood counts were good at 1170 so she received pentamadine and her final dose of Vincristine chemo.  The clinic staff was so wonderful they gave her a Barbie at the end of treatment at the clinic and also an award and a photo op :)   It was such a joyous celebration, I had many tears. Tears of joy and relief knowing that chemo will never again enter my little girls body through her port ever ever ever again. Over the past 2 1/2 years all of the nurses and doctors and staff at the clinic have become like family. We will always have a special place in our heart for all of them.  And we will still see them once a month for the first year off treatment and for the rest of Ava’s life.

We then went to the hospital. The same hospital and same area where Ava was diagnosed with Leukemia back on December 9, 2011.  As happy as I was with the celebration we just had at the clinic, my anxiety came back as Ava had one last big chemo procedure to go through – the spinal tap with chemo. With spinal taps, children cannot eat 8 hours before the procedure, so Ava was hungry and it was already noon.  Well her spinal tap did not start until 230 PM!  And she put up a fight with the sedation medicine as she did not want to go to sleep, but the medicine won and she was finally sedated so they could start her final lumber puncture.  After I left the room where Ava was being sedated, I cried. I cried tears of anger that our baby girl had to be here and had to get chemo in her spine and up to her little brain, I cried because we had done this to many times before and should never of had to do this to our baby girl in the first place.  The sedation doctor came out and got us, and I spoke with her doctor and she told us her spinal fluid was clear (which is exactly want you want to hear).  After she told me that, I started to cry again, but this time it was a cry of relief, a cry that it was finally over for our baby girl who has had too many sedations and spinal taps to count, a cry of happiness. The nurses we had over the past 2 1/2 years at the hospital – Beth, Julie, Cindy and Natalia have all been amazing to our family, and we said goodbye to them as we will never see them again (at least not there!).  As we left I looked back at Room 16 in the Sedation Suite, that was the room that we heard the news that Ava had cancer on December 9, 2011. I didn’t say goodbye to the room, I just looked at it and hoped and prayed that no other child will have to be in that room with their parents and receive the same news as we did on December 9, 2011, but knowing that until a cure is found there will be many parents with their children hearing news that no parent should hear about their child.

So the liquid chemo is done for Ava, never to be in her little body again.  But now we still have 5 days of steroids this week and 2 more times of oral methotrexate and 16 days of oral 6MP to take over the next few weeks.  After March 21 we will celebrate as I won’t have to give our baby girl any more chemo in her little body.  She will still have her port in her chest until the beginning of April.  This means if she does get fevers with her port in she will still have to go to the ER and get accessed in her port to received antibiotics. So the end of her treatment is officially over for us once the port is removed from her body and her body is whole again.

As you can imagine I am filled with so many emotions – happy, sad, anxious, nervous, joyous, angry, loved and more – I am emotionally exhausted, and so is my husband. Prayers have helped me this week as I have prayed a lot to the Blessed Virgin Mary, Jesus our Lord and God to help heal Ava’s body and help her body while the toxins are placed within, God is Good.  And I truly believe that prayer helps.  We are almost there, almost complete, almost free of the very toxins that were put in your little body to save you.

Thank you for your continued support and prayers.

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Cycle 7 Day 57 LTM

Today was clinic day for Ava as it was Day 57 of Cycle 7.  So off to the clinic we went. Her ANC was  good today- ANC of 880 so better than 550 a few weeks back!  She received a poke in her chest so that she could her ‘tubey’ could get the chemo drink.  So she received the Vincristine chemo and also Pentamadine and also received a IVIG transfusion to boost her immune system since she has been catching colds to easily at school.  We do not go back to the clinic again now until beginning of March, and guess what – THAT WILL BE HER LAST CHEMO TREATMENT!!!!! :)  So tonight once again Ava will start 5 days of steroids, take her nightly chemo pill, and methotrexate chemo pills tonight.  So for the next 5 days we will stay at home as the steroids really effect Ava and she will be very sad and non playful :(

BUT – We also received the phone number to call to book her appointment to get her port out!  We can make the appointment in March after her last Vincristine chemo and we will schedule it to happen a few weeks after her last chemo pill on March 21!  Hopefully she can go back to school next week too!

1 more Tubey chemo poke visits to go! 1 Spinal TO GO!

Thank you all again for all your support and prayers!

45 days left of chemotherapy treatment.