Mommy's Blog - BEWARE! IT'S VERY VERY LONG

I wanted to add a little (or a lot) more to Brian's blog - call it therapy for mommy. First Chelsea had to have the eyedrops again every six hours. The reason she has this is because if she didn't, the chemo would burn her eyes so bad. Our girl was an absolute champ with this - the nurses (who are beyond amazing btw - nurses may be the true angels here on earth) and mommy and daddy couldn't believe how well Chelsea allowed the nurses to wake her up every nite at midnight and 6 AM and put two drops in each eye without a tear. Personally if someone woke me up to drop something in my eye, I wouldn't be too happy! But she cracked all the nurses up with a little bit we taught her which she'd say every time. Drop Drop - Drop Drop - All done! No fear, just made it like a game.



Chelsea has become quite the celebrity here. They all know her and nurses have commented when they get her for the first time how excited they are since they've always heard so much about her. There have been so many special people here that have made her stay special, from the cleaning people who honestly may be the biggest joys of her life, to the nurses, to the Child Life team who head the playroom, to the music therapist who comes to visit her a few times a week, to obviously the doctors. Each and every go out of their way to make our little girl feel comfortable and happy.



I also wanted to detail more the nose tube situation. This has been the hardest thing on Chelsea. Her mommy holds her down, while two nurses work together to shove a tube in her nose, down her throat, in to her stomach. For a half hour after this is done, Chelsea just lays on me, won't lift her head or really talk to me. I think she truly feels violated that her mommy is subjecting her to that torture and if two-year old could be depressed, this has been the only thing that has done it to her. Everything else, she's ignored the effects because she'd rather play or be part of the action. The tube was inserted three times this stay - once when Chelsea was under anasthesia, once after she threw it up from the chemo, and once after she threw up at 3:30 AM from the feed. Her last nose tube was inserted on Saturday. Again, she had the same depressed reaction until Grandma and Grandpa showed up, which then brought a smile to her face and our happy, playful Chelsea returned. The only funny thing was we were teasing the nurse who inserted the initial tube because when the nurse walked back in the room, Chelsea pointed to her nose so we teased the nurse that every time Chelsea sees her, she'll be thinking "You, You did this to me!" (in the tone of Robert Deniro in Analyze This).





One other thing about the nose tube situation - when we were home last time, unfortunately the nose tube makes Chelsea stand out like the pink elephant in the room. Many times we were out, kids innocently asked what it was and Chelsea understood their question, and proudly rubbed the sticker on her face that holds the nose tube in place. That sort of killed me when we were home. Another time, a 10 year old girl also asked about the nose tube, and when i gave her a brief explanation (left the leukemia details out), the girl looked at Chelsea and commented "She's so beautiful". that innocent comment made me cry, but in a good way.



I also wanted to write about certain people who have helped us through this journey and to be honest, we could not have done this without. First - Christopher and our nephew, Aidan. For a five year old and almost seven year old - these too young boys have spent more time in a hospital these last few months than some people will ever see in a lifetime. But they don't care. They want to be there for their sunshine and the joy these two boys bring to our daughter's life is immeasurable. Christopher - though he's having a rough time with other things - could not be a better big brother and I could never love him more or be more proud. And he likes to be at the hospital. Not once has he cared that he's not been able to go to the pool and beach that often or I dont' think he's been to the park, Sesame Place, or had a picnic once, which is something we did all the time last summer. And I'm proud of that, that we've gone through this as a family because I think in the beginning we were worried about Chris not getting attention that we were more dividing and conquering - one parent with Chris; the other with Chelsea. These days, we've spent more time as a foursome in the hospital and I've never felt more proud of my family. As for our nephew, this to-be 7-year old (turns 7 in September) wants to do nothing else but see Chelsea. He should want to be out at the beach or at Sesame Place like he spent last summer, but instead, he gets upset if his mommy doens't take him to the hospital. He actually told his mother (Brian's sister - aka Aunt Melissa) this week that for Christmas, he'd rather just have Chelsea be home and healthy for Christmas than any toys. What 7-year old would give up the material part of Christmas??(then when Aunt Melissa told Aidan that Chelsea will be better by Christmas - of course he asked if he could have the toys :) I don't want to say this experience brought out empathy in both boys because it was there to begin with, but they've both made me so proud, beyond words. Their first concern is Chelsea and I think that's pretty incredible, considering their age.



Then there's my mother-in-law, father-in-law, and sister-in-law, who have been the reason, these stays have been bearable. Melissa, my sis-in-law, has been taking off work once a week since April (her employer has been kind enough to allow this) to visit so that she can provide some relief to us during the week (which gives me some time to go to the next door hospital to visit my father) and have some girl time with Chelsea, which Chelsea loves. The same story goes for my in-laws who I could not thank more. They too, visit once during the week and on the weekends, not to mention - watch Chris one day during the week and help pick up things here and there that we haven't had time to get. If you ask chelsea where she is going or where she wants to go, she'll say Grandma's house. These three people have lit up both Chelsea and Chris's life and have made this load easier on Brian and I. Then there's my Aunt Susie and Aunt Marsha, who have basically transplanted their lives to be there for my autistic brother who lives alone with my dad. So my wonderful aunts have basically put their lives on hold to care for my father's house and my brother, all while still finding the time to visit my dad and be there for him (and us). Selfless is not a strong enough word for them. Then there's the countless number of people who have all done something to make our lives easier and we're truly truly grateful. The list is long and I don't want to leave anyone out nor do I want to single out any one act more than other because they've all been amazing and helpful - but let's just say - people have been extremely generous and each and every kind and thoughtful act has given us strength and faith - that has either made our lives easier or been positive energy that we've taken and used it towards Chelsea and my dad so thank you, each and every thoughtful person who's reached out to us in one way or another. I've learned so much from you guys about kindness and thoughtfulness and I will take this lesson with me for the rest of my life.

There's another facet to our story that has made this experience bearable. There's 3 other amazing families on our floor that have AML and we've gone through this experience together. In two weeks, we were all diagnosed so our treatment schedules are within a month of each other. AML has a very intense and strange treatment route. We've been told by many doctors and nurses that this is the hardest treatment plan to endure for many reasons. First - the amount of chemo these kids receive is insane and they've all handled themselves like true hereos. Because of the amount of chemo and the goal of it which is to wipe out their immune system, they basically have to be quarantined in their rooms so they are not exposed to germs. That's why other patients on the floor can go in the playroom at any hour, but our kids can only go from the alloted hour of 3-4:30. the playroom has to be wiped down completely before our kids can enter it so our four outcast kids have become a close family and we all look forward to our 3:00 playdates (parents and kids). AML is also insane because of the duration of our treatment - whereas many cancer patients either receive their treatment in a clinic and return home or stay inpatient a few days at a time, AML patients sleep in the hospital for month-long intervals. I'm actually a regular at McDonalds - I go there every morning for coffee in my pajamas and I don't have to say a word - they just know how i like it and hand me a coffee. Some people are like Norm from Cheers at a bar - I get the honor at McDonalds (or McNodelands as some have liked to rename it from my big staples incident). But us four families have leaned on each other and gotten each other through each treatment. I was sad today to say goodbye to the 12-year old boy I've mentioned before and his family though I know we will still all help each other through treatments. Today he left after finishing his 3rd round of treatment and when he returns, he'll be on the other side of the floor, on the transplant side. This boy Kyle, though feeling lousy for big portions of his stay, ALWAYS smiled. Him and his family have truly inspired me and i get really choked up any time I speak of them. Then there's a beautiful 14-year old girl who when she gets together with Chelsea, they giggle together and we call Chelsea "Paige's mini-me". Paige too, has this beautiful smile and has a spirit larger than life, and is fine with everything except the loss of her hair. I look at her beautiful smile and think she is even more beautiful with no hair, truly, and wish I could make her believe me. Her stepmother has been the absolute rock for all us other mothers - always around to listen while she never leaves Paige's side (all the other parents go home atleast once a week but Paige's stepmom stays the entire time). And the last family is a five-year old boy named Ben, who I look at and my heart breaks because I know he's the same age as Christopher and should be starting kindergarten in the fall. There's a joke that when he does begin school and they talk about having tests, he'll ask if it's an EKG or a catscan. But I shouldn't feel bad - Ben is brilliant and will be a future doctor. He can pronounce the names of the chemotherapies better than any of us adults and is truly thriving, even after his body has been through so much. These three families are truly amazing. I've heard people compliment us and the way we've handled things, but if you saw these other families, they've been the same way so I think when you're put in a situation like we've been in, you just learn to take each day at a time with the hope that in the end, everything will be ok. Each day is another challenge or a fear but as each day passes, we get closer to our goal which is to bring our children home for good.

The weird thing is after Chelsea's treatments are over, her road to recovery is not over and there's potential for future heart problems, but it's weird to think we won't be here anymore, at the hospital. I was just saying that to Ben's mother today - we've lived this life for so long, it'll be weird to not have to wait for someone to watch Chelsea to get my morning coffee or see my husband for more than a few minutes at a time. We're truly two ships passing in the night. I'm not usually one to express my love for my husband publicly - i'm a much more private person. But I can't say enough how proud I am of him and of us as a unit. This experience has shown me that together, we can handle anything because as insane as all this is, we've gone through it together which has only made us closer. I've also learned that he folds laundry better than me and I've been feeling this way for years but never wanted to admit it. So there it is, in writing! But he's managed to be my sound board (along with my dear friend Stacie), work his full time job, drive the hour commute to the hospital 4-5 days a week to see Chelsea and my dad, take care of Christopher, and do all the every day things that need to get done such as food shopping and laundry (no cooking, cutting the lawn, or cleaning the house thanks to many of you).

This is long and lengthy and I apologize. But i've been very pensive the last few days, and it occured to me that though people know what we're going through, they don't know the emotions of our journey and I just felt the need to write about it. They know our story - our daughter has leukemia but they dont know the full journey. I think at some point in my adulthood, I stopped myself from writing things - and now the words are just pouring out. This journey has been about a sad event, but it's really been about a lot of love. Thank you everyone for loving our family enough to want to hear about it. It feels therapeutic to share it. :)