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Hi, my name is Leigh and I'm a mom of three awesome children. Veronica is our oldest, 6 1/2, Iliana comes next, 4 and our youngest is our son lil' Frankie, 11 months (he's named after is papi, Frankie). We live in Lantana, Florida (just south of West Palm Beach) in which I'm a stay at home mom for the past 2 1/2 years (love it) and my husband works as a senior roadway inspector for an awesome company our of Tampa Bay. The past two years have been really rough on my. Last year my parents were going through a really nasty divorce after being married for almost 34 years (it should have happend a love time ago but they stayed together for us kids and well it wasn't good) but then Janurary 18, 2010 hit and I along with my younger two sisters and younger brother lost our mother to liver failure - she was only 54 years young and then two weeks later on the 30 we lost my moms mom, my grandma who was around 78 years young. My dad was and still is an alcoholic and drug user so no help from that end but I was very lucky to have my moms side of the family (ex: aunts and uncles and cousins) for support along with my sisters and my brother somewhat. We got through that and every now and then it still hits me like a ton of bricks especially on August 30 when our oldest daughter, Veronica, was diagnosised with craniopharnogioma which is a benign tumor put the placement of the tumor is around her pituitarty gland and optical nerve and that makes it nearly impossible to operate on so what they did was drain the excess fluid, place a resoviour and a catheter permentily in her brain and then set her up to have proton beam radiation treatment up at Massachusetts General Hospital. All this happened so quickly that I think I'm running on pure adreline and planted a smile on my face from day one because I honestly believe that if I stop and really think about what is going on and happening I'll have a massive break down and that's not what my little girl needs nor does my other children. So as of right now, Veronica and I are living at a hotel just outside of Boston getting shuttled everyday to and from the hospital while my husband is down home in Florida with our two little dealing with them (VPK and a babysitter) with the help of his mom.
We are very greatful for finding this tumor when we did and how we did because she did a cartwheel on carpet and hit her head and complained that her head was hurting and that's why I brought her to our local hospital who then did a ct scan and that's how they found it and then two days later she was down at Miami Childrens Hospital have brain surgery and a month and a half later we are in the very best place that we can possibly be and that's Mass General Proton Therapy Center!!! We do have extended family for support but unless it's our own child going through this or your own partner (husband or significant other) with you going through the same emotions, it's just sooo hard for them to relate and it's not their fault!!!
I would not wish this on any parent or any family because to see your child your baby that you created that you carried for 9 months go into this massive machine and go through the tiredness and sickness with a smile on their face and being strong even though they and you know they are scared but being brave because they want to SHOW you that nothing bothers them is heartbreaking!!! I know that I'm not the only parent going through this and that in itself breaks my heart!!!
That's enough for now and I'm glad for this website even if it's just to get some of my feelings out. Thank you - Leigh
Leigh, my thoughts and prayers are with you and your family. It sounds like your daughter is receiving the best possible care and she is so fortunate to have you by her side. Please know that we are always here to listen. Keep us updated on her progress.
Well, we had a minor set back this past week. Veronica developed an infection in the Broviac line that comes out of her (she was suppossed to have sedation with her radiation treatments but ended up not needing that - awesome) the week before she was scheduled to get the line removed. We ended up in the hospital for 7 days and was just released today and was able to move into an apartment literally across the street from the hospital!!! It's totally what her and I needed and her spirits seem to be back up to her normal levels. It also helps that her papi, little sister and baby brother are coming in this Saturday for the holiday and won't leave until the Sunday after Thanksgiving. Also, we are in the middle of Boston so we get to go sightseeing and get the "feel" of the city!!! I'm thankful that the doctors were able to get her better and once we are done with the antibotics then that line will come out and we won't have to worry about that anymore!!! Well, more later - Thanks for listening - Leigh
I'm sorry to hear about the setback but it sounds like she's on the right path now. I hope you enjoy the visit with the rest of the family & I am so excited for you that she is out of the hospital!