Anthony was happy to be here! He ran from hallway to hallway. Room to room. He wanted to play and talk constantly. His energy is exactly what I have been craving. Kayla too! Even if at times she seems annoyed (here at private in our apartment), she is happy to show him off and have him have her back everywhere else. He doesn't get any of this. He had fun making snow flakes w/ child life. He cracks everyone up as we go along....... both of my kids do. Why is that? They just say things.........
We had a hard time avoiding smells today. Kayla was sensitive as usual. Hopefully this new medication mixed with zofran will help. She was THRILLED to have OT today (occupational therapy) OT= play time! She finished her fish. Thank you Ashley for looking forward to Kayla's visits as much as she looks forward to seeing you!
A new day starts tomorrow as we have reached the 3/5 point of this side of the radiation. No new symptoms should arise. We hope her energy will climb (appetite too!) with her brother here. We weighed them both after her appointment today with Dr. Pai. Anthony weighs 3 lbs. more than Kayla. He is 3 years and 3 months younger. They are the same shoe size! (size 1... great starting off point)
Ready. Set. Go!
We pray her weight continues to go up. We pray for this because it is HUGE when it comes to the next treatment round. Kids with more weight on them tend to do better. So, let's get those pounds on!
For the rest of us... well....... we have time to get it off after. (hopefully)
Hug each other tight. Love with all your hearts. It's a constant reminder every single day how your world can just be turned upside down. You never ever know.. I never thought it would be me. We never thought it would be Kayla! We were healthy. Did everything right. Children should not have to go through this. They should not skip one day of being a kid. They should not miss one day of school. They should not miss one practice. They should never have more then the flu. This needs to end. Our kids should never live their lives on Zofran. They shouldn't have their skin and their insides burned off with radiation. We shouldn't have to slather their skin with special creams to heal them from it. We should not have to fear a second a risk of a second cancer from a "cure" that they would die from without receiving. It's just not fair. It's not fair. It's not fair................ today was a just like all days. It was hard. We saw more and heard more then any parent should ever see or hear in a day. It was a hard day. Some days we can be tough. Some days we stand up and still smile at the end of it all. Some days we just cry a lot. Some days we need hugs on tap. I look forward to our time at home. I worry because of this blog that I can't hide and pretend this all isn't happening in those short weeks home like I will need to. I worry because I need it mentally. The road to come scares the crap out of us. It isn't pretty. This "break" is a chance for us to check out and believe we live in a normal house. A place that doesn't have a front desk you have to walk by every time you want to come "home". A place that doesn't judge you. A place that you don't constantly walk into an elevator or down a hall and are reminded of why you are here................. I want to be home. I want this to all go away. It's easy to just stop reading my words. To just turn away, to not read this blog. But this is my reality. I can't turn away. Who knew. Who could have told me that cancer does not discriminate and I would have thought for a second it would have been Kayla?
Ok. It's been a hard day. A good day too... A blessing and a curse as we call it around here. This is my diary.
You don't have to be strong all the time. You have a right, all of you, have the right to break down and to grieve for what you are faced with right now. We are all put to God's challenges, and it is not fair at all. But God is putting it their to make us all stronger, and to learn things. It is NOT fair and does not make sense at all. But the great things right now is that you all are strong (even if you feel like giving up),and you are all there for Kayla. Some parents are not there for their kids. They run away. Leave them at the hospital. To avoid feeling this pain. Its insane, but true. And Kayla has the perks of true love from her whole family and friends. She has BOTH her parents with her every step of the way through this. And they got the whole tumor, and she is doing really well considering. Sometimes its hard to remember the positives, although you do and I read that in your blog. Sometimes its easier to say it than to believe it. So allow the people you have, TONS of family and friends, plus the support people at the hospital, and people you have not even met who read this blog -- hold you up when you are not able to do it yourself. I bet there are support groups if you need, at St Judes, for the parents. You will make it through, you all will. And you will be stronger than ever. Our purpose in life, sometimes makes no sense, but it is there. Your family has an amazing purpose, to inspire so many. And you are all so close. You will get through it. Hang in there!!! Everyone is rooting for you!!!
ReplyDeleteYou are so right!! No child (or anyone for that matter) should ever have to go through this!! It is not fair!! We will continue to pray for Kayla and the rest of you every day and definitely take some times to yourselves on your "break".
ReplyDeleteThank you, Annie, for being "real." Thank you for not hiding the deep grief, fear, and isolation that you are all feeling. Your blogs are so wonderful and optimisitic, but we all know that you are giving us the side we don't know to see. In our hearts, we all feel such pain for all of you and we continue to pray harder and stronger than we knew that we could.
ReplyDeleteThank you, also, for showing us how to get through something with dignity. It's so easy to take the easy way out and lash out at the world. Your blogs show us the beauty in lifes greatest challenges and how to make lemondrops/lemonade out of lemons. You have had many choices along this path, Annie, and you have taken the high road each time. We all stand behind you, Denny, Anthony, and especially Kayla and we will all be whatever you need for us to be because we love you and want to be there to support you.
Stay strong and keep up the good fight - all of you! And if you need to fall, we'll catch you, fluff you up, and give you whatever you need!
Can't imagine what your going thru as parent's. To think I had it hard as a parent of an epileptic. God Bless you and your beautiful little girl
ReplyDeleteI thought that I'd pass along all of the things that I would eat CONSTANTLY if gaining weight was my goal, maybe something will sound yummy to Kayla too?: (in no particular order)
ReplyDelete- nutella
- sourdough french bread
- milkshakes
- see's candy
- cadbury cream eggs (they are back in the stores now!)
- french fries
- onion rings
- corn dogs
- crepes (ideally with nutella)
- creme brulee
- apple crisp
- raw chocolate chip cookie dough
- brownie bites
- ben 'n jerry's brownie batter ice cream
- brownie batter, the real stuff
- brownies
much love!
Annie, I am one of many whom you've never met in this wonderful Novato community, who not only faithfully reads your blog every night, but holds Kayla up in prayer and strength before I close my eyes at the end of a busy day. I've been following your story from the beginning. YOU AMAZE ME!! Thank you for being real. Thank you for sharing your deepest and personal thoughts. Thank you for reminding me to give my kids that extra kiss, hug, or even read "just one more story." Your family will get through this and Kayla wil come out stronger than ever!! The power of prayer does wonderful things....
ReplyDeleteStay strong Annie! You have an entire community behind you and your beautiful family! Of course you won't be able to hide - but why would you? Friends, family, community - those are what you're coming back to. That's what makes us feel like we're home, that we're loved, that we matter. YOU matter! Kayla matters. Stay strong my friend!
ReplyDeleteOh, I know what you are going through, not exactly, but pretty close! It is not fair, it stinks and it is hard. Know that our family and lots of other folks are praying diligently for Kayla's cure and for strength and endurance for you and your family! Sending lots of love from CA!!
ReplyDeleteYou constantly amaze and raise us. I wish we could scoop you up and pull you from the fatigue you are feeling. Your family has been free-falling through hell and, at the same time, showing us all such "perfict" light. I pray that you can feel the gratitude and see the grace we have witnessed in these past two months. Because of all of you none of us can never know how not to be strong. God bless and embrace your most blessed and precious hearts. We do. Love, Mary and Frank Hoburg
ReplyDeleteBless you all---and praise the Lord for the good
ReplyDeleteappetite. We will continue to pray for those
pounds to pile on.
You can hopefully see a tiny little light at the
end of the tunnel for now.
Be strong---you can do it!
We love you all and think of you all day long.
Dianne
As someone who has close family friends whose oldest child was diagnosed with stage 4 cancer at age 8 (and beat it - now almost 19!), I completely feel for you and your family. My good friend, his mother, has said many times that his illness and the treatments it required were "wrong on every level", which sounds a lot like what you posted tonight. I'm sorry you are going through this.
ReplyDeleteHang in there and I hope your trip home is the relaxing break you need. Stay strong and be well.
Best wishes,
Jen Martin
None of this makes sense! None of it! But what I and many others know is that Kayla is a warrior. You, Denny and Anthony are also warriors. Brave, courageous and fighters. . . You are not alone (in spirit). Miss you and think of you all always.
ReplyDeleteLove, Melissa Hannan
Annie,
ReplyDeleteSo many of your words ring true for how I feel about not being away to step away from my pain. What I can tell you is that Kayla will never forget all of your love and support and for feeling everything WITH her. I've been the sick child in a family and I would NOT have gotten through it without my parents. Even though she's young and may not full comprehend all that you're doing, she will...and she'll be so incredibly grateful for every ounce of energy you're giving to her!
Your family is inspiration to me and is an example of the kind of family I hope to have for myself some day. God doesn't give you what you can't handle - clearly, He knew you were strong enough to take on this difficult part of life.
I pray for you all on a regular basis and it is so clear to me that God has given you all this remarkable strength and unstoppable energy to get over this hurdle. Kayla seems to be a fantastic girl and she would not be getting through all of this as well as she is if it weren't for her parents. ;)
I hope she's getting excited for Tommy's Salsa! Wish I could overnight some to help her gain some weight!!! Have you introduced her to the wonderful world of peanut butter? I can't have waffles, french toast, or pancakes without it!!! ;)
Congrats to Kayla on the wonderful accomplishment of sedation-free radiation! Please keep me/us posted on anything that can be done from here besides prayers! Novato can't wait to see you!!!!
Sincerely,
Chelsea Nann
You have allowed yourself to be as vulnerable as anyone could ever be by sharing your innermost feelings, and it only makes us all love you and support you even more. IT IS NOT FAIR, no doubt! There is no escaping that. We ache for you, because even though you have all the love and support from us, we can't take your pain away! Stay strong dear friend! This too shall pass. Great job Kayla on getting past the sedation hurdle. Love and prayers to infinity plus infinity!
ReplyDeleteVictory! What super news about Kayla being able to eat in the mornings! Thank you for your honest and heartfelt posts. Wish we could take some of the burden off of you, but know we all have your back, even from miles away. Thinking of you every day! Posted a link over to your blog on mine today. xoxo Allie
ReplyDeleteHooray for Kayla! Bring on breakfast!
ReplyDeleteAnnie, like all who read your blog, I am so touched by the depth of your sharing, the highs of the good news, the pain of the struggles. For your post today, at the risk of getting too philosophical (but these are lyrics from Boys II Men!): "How do I say goodbye to what we had, the good times that made us laugh outweigh the bad, I thought we'd get to see forever... but forever's gone away - it's so hard to say goodbye to yesterday." Which will return.
As always, love and hugs to all from AuntieAnn
We all love you so much and are here for you right when you need us to be. We will survive this together, as warriors, as family, as one! Strength in numbers means we will kick the **** out of this!
ReplyDeleteMy Sweet Annie -
ReplyDeleteI read this blog entry last night before anyone commented and was at a loss for words. Then I got up my strength to post and saw Krysta's post to you, the first one. Then I was at another loss for words. She said it all, and I commend her for that. AMEN to Krysta!!
I would also like you to know that anytime you feel the need for some serious Momma love, I will make the trip out to support you in person. I wouldn't be able to be there for more than a week, but I could definitely come be by your and Denny's side. Just say the word. Our family is strong together and we love you all so much!
Love,
Mom
you are all so awesome. I am sorry that you are having to go through all of this but really... you are awesome. Wish there were more ways I could help, and I wish I lived in Marin so I could go to ALL the fund raising dinners!!
DeleteEmily Aufdermaur
Annie,
ReplyDeleteYou should know how much we all love and support you guys. Yesterday we walked over to the San Marin Plaza and Keira noticed all the flyers supporting Kayla at the businesses and she was amazed they all knew her.
Tonight will be a busy night for Finnegans' at the Dine & Donate for Kayla. All of Novato supports and loves you. Stay strong, and when things catch up remember that we all support you! Leslie
This isn't fair and it isn't right. None of it. Your incredible grace and srength in the face of all this absolutely astounds me. But, with your amazing courage, you are allowed to feel the grief, the anger, the awfulness of it all. Because, courage doesn't mean you aren't afraid or sad, courage is what you do in spite of it. I read your blogs daily, I am crying with you, I am sharing in the pride and joy of Kayla's millions of accomplishments daily, and I also share in the feelings of anger that Kayla (and her beautiful mommy and family) are having to endure this. Know that my heart, and the hearts of thousands, are with you in all these moments -- perhaps never being able to even comprehend all that you are dealing with -- but sending as much love and compassion as is humanly possible. In the honesty the words you write, there is so much power. Warmest of thoughts and wishes, Bridget Park (Amelia's mom).
ReplyDeleteDITTO DITTO DITTO to all of the above......with some additional remarks.
ReplyDeleteYes, it is awful what Kayla and all of you are having to go through----and for parents to have to watch their child in anguish and agony is just unequivically WRONG. But no where is it guaranteed that life will be "fair". There is no chart up in the sky with each person listed and gets equal # of gold, silver, bronze, red, blue, green, purple etc only that which we can handle, I also believe in the right to "question" if He hasn't pushed the boundaries and "politely,but loudly", ask Him to 'BACK OFF' that you are barely managing! You see, I've been on a similar journey---virtually been there & done that---more than once.
I too have called upon Mary, Jesus' Mother to help me.....recognizing she was a real person who had a very hard journey as His Mother---having to witness & bear His anquish and agony.It's said she had a sword of sorry pierce her heart. She knows how awful this is, and can be a resource for help and support----she truly understands. Denny could seek Joseph for the same assistance. AND Don't forget your Angels.....call on them for your selfs and call on Kayla's to be there...to gather the host of Angels to help you.
Through my own walk, I'v compared a person's ability to give to that of a well----each time our child is thirsty, we give & give & give. But to do that, our internal well also must have time to replenish---to refill in order to give again and again. Annie and Denny you both must find some actual ways for 'down time'----not to be selfish, but for needed replenishment. It's a critical component to your 'Giving Longevity', especially when you are in the thick of a time of great need, that is foreseeable for a prolonged time. As fabulous as St Jude's is.....there must be several levels and options for parent's support: group, 1:1, couple time, single time---whatever is needed to help you refresh. Advocate for this for your 'selfs' which in turn is for Kayla (and Anthony)!
As for food and calories.....WHATEVER WORKS What about Peanut Butter and Honey? on sandwiches, crackers, waffles? Or straight out of the jar! If the P'butter is too 'heavy' what about just local Honey to boost immune system? Honey is quickly absorbed
LAST: This extended support system is not going away.....we are all here for the full journey to be there with and for you.....NO MATTER WHAT---THE WHOLE WAY. So if it helps for you to 'scream' the insanity of the whole thing out on this blog....to get out to the universe the audacity and atrociousness of it all---DO IT! We can take it.....we can help shoulder it by reading, being aware of the crappy times, as well as the celebrations of progress (weight gain, one less radiation treatment)
You all are LOVED!