This blog is late being posted because our internet has been down since I started writing it and it just hasn't been a priority to get it back going but I do apologize for the lack of updates for those of you depending on the blog for Hope's health updates. For a month it has been my one goal to have our Hope home for Christmas and it appeared everything was on course after coming home the Thursday before Christmas. We spent the next 6 days and 5 nights trying to keep her comfortable with multiple emergency late night visits from the Hospice team and Rochelle, one of Hope's all-time best friends and one of my first friends when I moved here in 5th grade. She's a nurse with a daughter in Nathan's class so almost daily we have requested babysitting, a shoulder to cry on, transportation, and medical advice. We had only one good night, and it was obvious we had to have 24-hour attention at this point to make it. I just could not keep up after Hope and the boys even with all the love and support from our friends, family, and hospice.
After fighting with the insurance agency (at one point I was on the phone with them saying I would send them a U-Tube video of Hope, have them talk to the hospice nurses which they actually did, and then I would send them another video of our two children begging for their mom to be home for her final Christmas) they finally relented and offered 24 service until Friday morning. My Christmas wish fell apart late afternoon on Christmas eve when there was no other choice but to bring her back to hospice as she almost stopped breathing completely, and swelled up so much calling her Peter Griffin with chicken legs (by the way I always love the impromptu fight scenes on Family Guy between Peter and the chicken) did not do it justice. It was one of the scariest things I had ever seen, worse then my brother Kurt's bedhead.
So we had a quiet Christmas morning at our house, my parents spent the night, and we opened our gifts. Hope's two brothers and their families joined us late morning before we all came to the hospital to open Hope's gifts and let the boys help her out. Christmas night my brother and his two children arrived followed the next afternoon by my cousin Brad, his wife and two kids from Maine (after driving 22 straight hours to be here they came straight to the hospital and visited with her the last time she was communicative). They are all staying at our house helping with everything and making it as easy as they can on the boys and I. The two grandmas and Hope's brother Will, his wife and two children are also here making it easier on everyone. Our wonderful neighbors, and long-time friends Ann-Marie, Jennifer, Cheryl and many more are helping too. Everyone that has ever encountered Hope loves her, and the silver lining of this tragedy is that it has brought everyone closer together along with defining what the true spirit of Christmas is for all of us.
I am also proud to say that with the unbelievable help of my office, I was able to buy every Christmas present in 2.5 hours on Wednesday afternoon for the boys and family to have an amazing Christmas. I am even prouder to say I didn't have to go into a mall, to get it done. An amazingly generous and anonymous donor from Nathan's school donated some incredible presents that were perfect for our boys. I'll never forget the love and support we have received from both schools as well. Don't worry, I'll be asking for more help in the future too but I'm certainly not going to be the only single dad around. I have coached all of Nathan's teams he's ever played on and plan to try and do the same for Reese. However I'll have to start taking the advice of an old coach of mine to select the kids based on the GLM principle (Good Looking Moms) so we might not win any games but we'll have the best looking fans in the stands.
There's no easy way to tell the rest of this update as Hope is no longer able to talk, write notes, or communicate in any way. She is resting comfortably except for a bed sore we're working on. Her breathing is intermittent, her swelling is down, and she basically does not open her eyes anymore. She has already begun the process of her spirit leaving her body, and our friends and family have told her it's okay to go. It could be minutes or days, but soon Heaven is going to have the greatest spirit we have all been lucky enough to encounter in our lives. We will always be a family, she has promised to haunt me and the boys, and she will be with us forever. We have no regrets, and she made me the happiest man in the world for a long time along with giving me the two greatest presents ever.
We have been open and honest with our boys since birth, and this process has been no exception. Last night Reese told me he wanted to die with Mommy, and there is no tougher conversation to endure in the world then ones we have with the boys every few days. They each have a new stuffed animal that we told them they can squeeze tight and Mommy will feel the hugs. She will always be with us and listening so they can always talk to her no matter what is going on. They have otherwise been acting fine, just loving all the extra play time with cousins. They have 6 (yes that's not a typo) light sabers after Christmas morning so our house has become like the Death Star and the play room looks like the Jawas Rover after the storm troopers destroyed it (now I know no one will get that reference unless they are a sci-fi freak --- so both of Hope's brothers get it --- or have kids like I do that love Ewoks more than their Dad).
At this point I honestly want and have asked Hope to move on quickly. It should be painless and easy on her already ravaged body. It won't be easy on anyone that ever knew her, but I don't think death ever is. I am hoping she passes in 2008, because this year already sucks and I'm up for a fresh start and celebration of Hope's life in 2009. If we could just eliminate from 11 June 2008 on my eyes might not look like Cheech and Chong as they tried to climb out of jail look at "Uranus" and the bags under my eyes would not look like Rocky after the first Clubber Lang (Mr. T) fight in Rocky III when his manager Mic died. Goodbye 2008, you really sucked, and let's all hope 2009 brings a fresh new start from the President to the economy to my family being boring and not needing any attention. Love to all of you and thanks for all the support to get us through this.
- Just Jake.
Friday, December 26, 2008
Tuesday, December 23, 2008
Merry Eve of Christmas Eve
I think the eve of Christmas Eve should be its own holiday, the time that every desperate slacker is running to the mall or calling stores to see if they have that one single item you've promised your child for the last 6 months that Santa would bring only to find out the one you lost in New York is the last one in existence on the entire Earth!!! I'm not thinking of anything too specific and I know I speak for all of you on that issue. Well that was me today with a limited window allowed by a nurse at the house and my parents watching the kiddos. I scrambled hitting close to a dozen stores in about 2.5 hours and then brought everything back to the office where little elves (sorry Jamie and Domingo but you are short) with big hearts were nice enough to be on stand-by to wrap our presents for us. Please don't forget the big cool ones are from Daddy, the underwear is from Mom, and anything else can be from the big guy with deer (that's deer Kurt, not beer).
We have been home since Thursday afternoon, and the good news is that we had a good night last night. Hope slept pretty soundly (as did I for the first time in almost a month) only waking up 3 or 4 times during the night. The bad news is that the previous nights since we were home were worse than Chevy Chase's and Pat Sajak's attempts at late night TV shows. I'll just say I'm not going to change professions any time soon to home healthcare. Hope is comfortable most of the time, cognizant of her surroundings, able to have conversations via writing less and less, and unfortunately has increased pain and side effects like unbelievable swelling from her bottom lip to her neck. That is the tumor growing and a side effect from all the radiation and chemotherapy she has had over the years.
Our goal is to get her out into the living room on Christmas morning, party to see if she'll share some of her potent cocktails for New Year's Eve, and just savor every last morsel of time we have together. She's giving me less of a hard time, bossing everyone around and telling them exactly how everything needs to be done less, and is a shoo win for any Peter Griffin look-alike contests. She is sad more often, as are we. The kids are doing amazing with it all, enjoying their short visits with Mommy whenever they can. My brother and his two kids along with Brad/Rachel and their two kids will all be staying with us over the holidays helping out with the kiddos. Will and Anna and their two kids, and John and Esther and her double sized belly will also be here for Christmas.
Merry Eve of Christmas Eve to you all, and please this year try to think less about that perfect gift and think more about spending that perfect moment with your loved ones. Savor every moment, live to make sure you have no regrets, and make sure you tell them you love them so often they get sick of it. Count your blessings, not the items you don't have. Most importantly of all, HOPE your loved ones and your own healths stay as strong as Santa Claus' back. Love to all of you and thanks to everyone sending us good thoughts, mac and cheese, and thanks most of all for Ann-Marie, Rochelle and Cheryl showering with Hope as that was the one gift Santa could not bring to me.
Love,
- Just Jake.
We have been home since Thursday afternoon, and the good news is that we had a good night last night. Hope slept pretty soundly (as did I for the first time in almost a month) only waking up 3 or 4 times during the night. The bad news is that the previous nights since we were home were worse than Chevy Chase's and Pat Sajak's attempts at late night TV shows. I'll just say I'm not going to change professions any time soon to home healthcare. Hope is comfortable most of the time, cognizant of her surroundings, able to have conversations via writing less and less, and unfortunately has increased pain and side effects like unbelievable swelling from her bottom lip to her neck. That is the tumor growing and a side effect from all the radiation and chemotherapy she has had over the years.
Our goal is to get her out into the living room on Christmas morning, party to see if she'll share some of her potent cocktails for New Year's Eve, and just savor every last morsel of time we have together. She's giving me less of a hard time, bossing everyone around and telling them exactly how everything needs to be done less, and is a shoo win for any Peter Griffin look-alike contests. She is sad more often, as are we. The kids are doing amazing with it all, enjoying their short visits with Mommy whenever they can. My brother and his two kids along with Brad/Rachel and their two kids will all be staying with us over the holidays helping out with the kiddos. Will and Anna and their two kids, and John and Esther and her double sized belly will also be here for Christmas.
Merry Eve of Christmas Eve to you all, and please this year try to think less about that perfect gift and think more about spending that perfect moment with your loved ones. Savor every moment, live to make sure you have no regrets, and make sure you tell them you love them so often they get sick of it. Count your blessings, not the items you don't have. Most importantly of all, HOPE your loved ones and your own healths stay as strong as Santa Claus' back. Love to all of you and thanks to everyone sending us good thoughts, mac and cheese, and thanks most of all for Ann-Marie, Rochelle and Cheryl showering with Hope as that was the one gift Santa could not bring to me.
Love,
- Just Jake.
Thursday, December 18, 2008
Hope for my birthday
An early present arrived on my birthday eve this afternoon, that's right Hope came home to stay for a while or maybe forever. Since I had to tell her 6 hours before her birthday that she had cancer again and there was nothing more that could be done for treatments 3 weeks ago, things had to start looking up. I can only imagine that was what it felt like to shoot old yeller, only a Madoff bank account percentage times higher. By the way how great is it that his name is pronounced Made-off??? Hope is home, comfortable, and attached to more equipment than in Alien when they traveled into deep space or Darth Vader as they rebuilt his body at the end of Episode III. She has her travel pack morphine that gives her 2 mg every hour plus she can hit the button for 2 more mg every 15 minutes. If I could get my hands on something like that I'd quit drinking on the weekends!
She has oxygen, which is pretty funny to watch the nurse freak out every time I start smoking next to it. Cancer, large explosion, what's the difference? We have a nurse helping us for 5 days and then it's all on me and our friends/family. How scary is that, one of the most "what were we talking about" and "sure I'll have another" people acting as a nurse/doctor. Doogie Howser would roll over in his tiny little grave (I think Nathan is now taller). Hope either loves me way too much or just doesn't give a shit anymore (sorry grandmama). I have changed out her trach, give her all her feedings, connect and disconnect her morphine and oxygen, and now since we're out of the hospital I am in charge of giving her all of her meds. They are all now liquid or capsules to go through her stomach tube so technically they can't tell who really is taking them.
Yes folks, I have won the drug lottery. I plan on not feeling anything through the new year, telling the docs/nurses that she needs twice the meds, and feeling my kidneys burst from exhaustion. I think that's how Kurt felt in junior high school, my cousion Luke in high school (sorry Tammy but he totalled two cars we know of), and just about every friend and myself in college and beyond. That is except Hope, the only woman I know that did not have to make one lifestyle change when she was pregnant except to drag me to preggo stores in Orlando because Melbourne did not have enough "selection" to look at maternity jeans. They're not jeans by the way, they're freaking kangaroo pants and exactly the same as the ones we saw in Melbourne except twice the cost. By that I mean "no dear they do not look like maternity clothes and you do not look fat in them." Practice that one boys for all you expectant fathers. If you believe in fate and/or that God hears all prayers please explain this one to me. Please!?! Maybe the chaos theory is more accurate as briefly explained in Jurassic Park I by Dr. Malcolm (Jeff Goldblum). Yet I digress.
Hope being home means I get to sleep in my own bed for the first time in 19 nights (who's counting) instead of that beautiful fold-out chair in the hospital room. In case you don't recall please go back to previous blogs to review my fondness of hospital chairs and how they treat their non-insurance covered patrons. Hope will be home for as long as I and a few friends/family can take care of her, or possibly forever. I won't go into details, but we were delayed coming home due to side effects that are worsening. If you've ever seen Family Guy, she looks like Peter Griffin with chicken legs (Hope knows I love her and that's just a joke). The boys ran into our room when they got home, hugged and kissed her gently, and then ran back out along their merry ways. Yes, things are back to normal with Hope at home in bed watching Oprah falling asleep all the time and there's not a better present given to anyone on their birthday eve in the history of the world. The three wisemen love you Hope, and that seems especially poignant this time of year although you are the one giving us the gift of you at home.
She has oxygen, which is pretty funny to watch the nurse freak out every time I start smoking next to it. Cancer, large explosion, what's the difference? We have a nurse helping us for 5 days and then it's all on me and our friends/family. How scary is that, one of the most "what were we talking about" and "sure I'll have another" people acting as a nurse/doctor. Doogie Howser would roll over in his tiny little grave (I think Nathan is now taller). Hope either loves me way too much or just doesn't give a shit anymore (sorry grandmama). I have changed out her trach, give her all her feedings, connect and disconnect her morphine and oxygen, and now since we're out of the hospital I am in charge of giving her all of her meds. They are all now liquid or capsules to go through her stomach tube so technically they can't tell who really is taking them.
Yes folks, I have won the drug lottery. I plan on not feeling anything through the new year, telling the docs/nurses that she needs twice the meds, and feeling my kidneys burst from exhaustion. I think that's how Kurt felt in junior high school, my cousion Luke in high school (sorry Tammy but he totalled two cars we know of), and just about every friend and myself in college and beyond. That is except Hope, the only woman I know that did not have to make one lifestyle change when she was pregnant except to drag me to preggo stores in Orlando because Melbourne did not have enough "selection" to look at maternity jeans. They're not jeans by the way, they're freaking kangaroo pants and exactly the same as the ones we saw in Melbourne except twice the cost. By that I mean "no dear they do not look like maternity clothes and you do not look fat in them." Practice that one boys for all you expectant fathers. If you believe in fate and/or that God hears all prayers please explain this one to me. Please!?! Maybe the chaos theory is more accurate as briefly explained in Jurassic Park I by Dr. Malcolm (Jeff Goldblum). Yet I digress.
Hope being home means I get to sleep in my own bed for the first time in 19 nights (who's counting) instead of that beautiful fold-out chair in the hospital room. In case you don't recall please go back to previous blogs to review my fondness of hospital chairs and how they treat their non-insurance covered patrons. Hope will be home for as long as I and a few friends/family can take care of her, or possibly forever. I won't go into details, but we were delayed coming home due to side effects that are worsening. If you've ever seen Family Guy, she looks like Peter Griffin with chicken legs (Hope knows I love her and that's just a joke). The boys ran into our room when they got home, hugged and kissed her gently, and then ran back out along their merry ways. Yes, things are back to normal with Hope at home in bed watching Oprah falling asleep all the time and there's not a better present given to anyone on their birthday eve in the history of the world. The three wisemen love you Hope, and that seems especially poignant this time of year although you are the one giving us the gift of you at home.
Thursday, December 11, 2008
Hope is coming home
It's been a long time since I blogged, most of you probably have given up and do not even check us anymore it's been so long. For those of you needing a quick recap, Hope had cancer come back in May of 2008, surgery in June that removed half of her tongue, almost a month in the hospital with horrible side effects, almost 6 months of torturous depression, anxiety, and loss of 1/3 her body weight, and all the meanwhile keeping up the strongest spirit of anyone person I have ever met. She has loved her boys, her friends, and done her best under the most excruciating of body failures. She is now for the first time in over 6 months resting comfortably in a Hospice bed with hopes of coming home on Monday.
Yes the 'C' word is back, yes it has taken over her tongue, jaw, lymph nodes and who knows what else, but most importantly she is comfortable again. She is Hope again, and I haven't been able to say that for a long time as many of you know from my e-mail pleas for help. Her eyes light up again, she makes fun of me constantly, she is planning for the future again, and one more time because this is so important to her loved ones she is comfortable again. She and I are comfortable with the decision she made, and that is there is no more fight in her. There are no more options for surgery, treatment, or otherwise. We have no regrets, and we are trying to savor every moment we have left together and with our boys. She will not ultimately win this fight, but she is the strongest fighter I have ever known.
Hospice is keeping her comfortable for as long as she has left with her failing body. She will always be with us, every future step or trip along the way. We love her unconditionally and her boys will always know and remember the only mother that could have provided the magical life they have today. They know how lucky they are, but they will soon have to learn the hardest of life's lessons that nothing lasts forever. Our love for Mom will, but her body was not up for the task. She will leave it behind for much better and brighter times as she joins us and watches over us. She'll still be there to make fun of me, help Reese get up when he falls down, and help Nathan when he's so nervous he can't make one more step without Hope's help.
Hope's body will be back home on Monday for us to enjoy for as long as we have, but her spirit will live with each of us that loves her forever. I love you Hope for coming home to us body and spirit, and I love you even more for staying with us forever in spirit. More importantly, our boys will always know and love their mama for what she has given in body and so much more that she will give in spirit. The four of us will always be together, and you will forever be a part of every life you touched. Hope will ultimately lose the battle, but she has won the war with more love than any person I have ever known from anyone that has crossed paths with her. Hope is coming home on Monday temporarily and forever. We love you Hope.
- Just Jake.
Yes the 'C' word is back, yes it has taken over her tongue, jaw, lymph nodes and who knows what else, but most importantly she is comfortable again. She is Hope again, and I haven't been able to say that for a long time as many of you know from my e-mail pleas for help. Her eyes light up again, she makes fun of me constantly, she is planning for the future again, and one more time because this is so important to her loved ones she is comfortable again. She and I are comfortable with the decision she made, and that is there is no more fight in her. There are no more options for surgery, treatment, or otherwise. We have no regrets, and we are trying to savor every moment we have left together and with our boys. She will not ultimately win this fight, but she is the strongest fighter I have ever known.
Hospice is keeping her comfortable for as long as she has left with her failing body. She will always be with us, every future step or trip along the way. We love her unconditionally and her boys will always know and remember the only mother that could have provided the magical life they have today. They know how lucky they are, but they will soon have to learn the hardest of life's lessons that nothing lasts forever. Our love for Mom will, but her body was not up for the task. She will leave it behind for much better and brighter times as she joins us and watches over us. She'll still be there to make fun of me, help Reese get up when he falls down, and help Nathan when he's so nervous he can't make one more step without Hope's help.
Hope's body will be back home on Monday for us to enjoy for as long as we have, but her spirit will live with each of us that loves her forever. I love you Hope for coming home to us body and spirit, and I love you even more for staying with us forever in spirit. More importantly, our boys will always know and love their mama for what she has given in body and so much more that she will give in spirit. The four of us will always be together, and you will forever be a part of every life you touched. Hope will ultimately lose the battle, but she has won the war with more love than any person I have ever known from anyone that has crossed paths with her. Hope is coming home on Monday temporarily and forever. We love you Hope.
- Just Jake.
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