Dec 16, 2012

C

Pigtails' mother was diagnosed with brain cancer five years ago.  Chemo and radiation shrunk the tumors and hogtied the cancer into remission.  She did well after that, went back to work and felt fine for a long time.

Cancer is patient, deceiving, relentless.  It hides for ages and tricks the host into thinking they've won.  Even as it quietly comes back stronger, bulking up and resisting the same treatment that worked before.


A recent scan revealed glioblastoma is back in stage 4 flurry, a nasty mess multiplying so prolifically that cutting the skull and directly pruning the tumors is the only buffer against imminent death.  The surgeon was able to remove 85% of the growth.  She awoke from the operation unable to speak, a tumor wrapped tentacles and damaged the temporal lobe, which controls speech.  She can talk now after weeks of therapy, and is still improving.  The words are slow to form, months after surgery.

Seizures are frequent lately.  I spoke with Pigtails' mom on the phone twice last weekend to make handoff arrangements.  Both times, she had a seizure on the phone.  Her live-in boyfriend is there to help, I dropped my kid with them for 2 hours, her mom had 15 seizures during that short visit.  When I picked up Pigtails, she was bawling in the car and asked, "why isn't God making mommy better?"    

The oncology unit started her on chemotherapy a few days ago.  She called me at work, struggling to make slow words, "I...I...don't think I'm going.....to..make it.  I'm going to die soon."  She broke down.  I bit my knuckle and tried not to do the same. 

It's a mixed scenario.  A person who cut me deeply in the past is winding down her days.  For a long time, I've done my best to minimize our contact, short phone calls to handle weekend trades is the extent of our interaction.

Now I feel sorry for her.

She's 37 years old.  Was born with a particularly unkind variety of sacral agenesis that's confined her to a wheelchair.  Birthed a beautiful daughter when the doctors told her she'd probably be childless. And now she won't be able to see Pigtails grow up.  That's cruel.

I've tried to balance being honest with my daughter and not sharing detailed information that will trouble and keep her awake.  How do I make sure she is cherishing this time with mom, while not freaking her about what is to come?  Pigtails is so sensitive, a soft heart.  She still cries if I give her that nasty now you've done it glare when she's done something wrong and in trouble.

I'm letting her mom call the shots on when she wants daughter to visit.  It's my turn to have the kid for Christmas this year, but I suggested they spend time together for all the holidays if she wants.

I'm not sure what else I should be doing to prepare Pigtails for what's coming.  She thinks mommy's going to get better, just like last time when she was treated and released. 

-Beard

55 comments:

  1. Beard - my heart aches for you all. Does PTs mom's care team or your local children's hospital have a child life specialist that you and Pigtails can talk to? Typically CLS are involved when a child is sick but knowing a CLS - i think finding one might be able to help you answers questions and help Pigtails (and you) cope. Google the specilist/specility. Having worked in a children's hospital - i think these folks are wothntheir weig in gold. Keeping you guys in my prayers.

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    1. Love this suggestion, as I am Certified Child Life Specialist (in Miami though). Most hospitals will provide consults for CCLSs to come and work with children of terminal patients. In my... 'professional' opinion, the best thing is honesty. Don't give her more information than she needs to know obviously, but at the same time- if her mom does pass this isn't a pain you will be able to protect her from forever. The natural instinct is not to want to inflict pain, to keep the happy smile on the face as long as possible, so often I hear parents tell me "she/he isn't strong enough to deal with this."

      She will be able handle this, because she has no other choice in the matter, you can't escape reality. The best possible thing you can do is just to be there for her and love her, keep doing what you are doing. When she asks questions, tell her the truth. Honestly, she probably already knows more than you realize; children are so observant and I can't tell you the number of times I've been 'forbidden' to discus a topic with a child, only to have them bring it up the second their parents walk away. 'Mom doesn't know that i know dad has cancer, but I do'. Not feeling like they can talk about it can cause more problems long term, as they create fantasies and misconceptions to fill in the gaps.

      Children need time to grieve too, and obviously you know your daughter better than anyone, but my guess is that she could benefit from getting the news early to have time to process it, so when the end comes it won't be a total shock. Google for books that are written for these particular situations. For example, she's a bit too old, but Sesame street has an amazing program for younger children facing bereavement. Have a counselor, or a pastor, or another adult she trusts (like curls?) there with you to support both of you.

      One other suggestion (and obviously take EVERYTHING with a huge helping, not just a grain, of salt): I think you have great opportunity to work on legacy building. Having the terminal patient and the family members work on scrapbooks, or time capsules, or writing letters to each other can be a great way to work through some of these feelings. It also becomes a channel for Pigtails to express feelings she either doesn't know how to say, or is scared to.

      I don't envy anyone going through this type of situation, but I will say that some of my most beautiful moments at work have come in the direst of situations. There is nothing like facing mortality to make you realize what is important. Redemption and healing at the end of life can be quite miraculous to behold, and give those left behind the strength to face the 'new normal'.

      Praying for you and your family Beard, and thank you for your honesty and willingness to share with the rest of us.

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    2. @Tiny T. - I'm going to sit down with Pigtails' mother this week and talk about options we have for finding help for both her and daughter. It will soon be time to look at hospice care, and as you say probably best to get a counselor for Pigtails sooner rather than later.

      @Bethany - Thanks for what you do to help others cope. I don't have experience working with a CCLS, so will call insurance and the hospital this week to see if we can speak with a Child Life Specialist.

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    3. @Bethany - My friend from work that is mentioned in a comment below gave Pigtails a couple voice recordable memory books for her and mom to work on. Friend did the same for her two little girls when her husband was dying of esophageal cancer last year. The girls cherish hearing their dad's voice, so we'll do the same for Pigtails and her mom.

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    4. Sounds like you have a good grip on the situation. One other thought- I read that you are also pursuing hospice care. The hospice may also have a CCLS on staff who specializes in this type of experience. It's not completely the norm, but growing in popularity for hospice to offer the service.

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  2. yo momma12/16/2012

    You both have a beautiful daughter. Tails loves her mom. Just let her spend as much time with Mom as she wants.I care about M. because of Tails. I don't like what she did to you, but she gave you a beautiful daughter. I'll miss her for Tails.

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  3. I know you're in central Iowa (I am too)...check out the organization "Amanda the Panda." I am sure they can help your sweet and beautiful girl face whatever comes, when it comes. Also, if her mom becomes connected with hospice care, they will have support network ideas for kids. From the perspective of a custody attorney with a lot of child development training, I will encourage you to NEVER EVER EVER say anything negative about her mom--now or in the future. I think you already have that instinct, and it's so protective of your daughter. I "found" your blog through a long-ago remodel post, but once I figured out you lived here in my area, I kept following. You're raising your girl in a great place.

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    1. A friend of mine from work lost her husband to cancer last year, he was in his 40s. She enlisted her two grade-school daughters in the local Amanda the Panda program and had good things to say about it. We'll take a look, between that and CCLS we'll find the right help.

      Hospice care is not yet involved as far as I know, but I think they probably should be. Her mom is having frequent seizures, and must be scared when home alone having them when her boyfriend is away working. That would awful to deal with.

      I never say anything negative about Pigtails' mom around my daughter. We keep it upbeat and I encourage her to call mom several times a week to check in. This is how it should be, I don't like when kids are put in the middle.

      Iowans unite!

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  4. As a nurse dealing with cancer patients with children I recommend you are as honest as you can be with Pigtails. If you can't bring yourself to tell her her mother is dying, at least don't tell her she will be all right.
    Something did occur to me as I read your post though and that is that God may be healing your hurt against Pigtail's mom through her illness. I pray this is so.

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    1. I've been letting Pigtails drive the discussions. When she asked if mom is going to get better, I told her possible but unlikely. Pigtails doesn't believe me, always an optimist, she thinks she'll pull through unscathed. I believe daughter knows she might die, although neither of us has said it aloud.

      Agree on the healing.

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  5. Just be honest with Pigtails and let her spend as much time as possible which is what it sounds like you're doing, Beard. My thoughts are with you and Pigtails.

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    1. Agree, I told Pigtails' mom tonight to spend extra time together over Christmas break. Hopefully she'll feel good during that time with minimal seizures.

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  6. Maybe you could get some help with how to explain it to her - a minister or psychogist with experience who can guide you with how to tell her and help her.

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  7. Ah!
    I see now (as I read the other comments) that you seem to have things well in hand.
    I'm sending you good vibes for strength - and prayers too.

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  8. Kathy H in TX12/16/2012

    Sounds like you're doing all the right things already and getting additional help as needed ... prayers are with you all as you navigate these troubling waters.

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  9. I wanted to comment, mostly to share my support, but also drop my opinion into the mix. I see that others here share my thoughts. I wanted to say; be honest, you know your kid, & from what we know she's very cluey. She can do this. If the time has come that Mum really is winding down, and time is precious, she needs to know. I love the idea of a CLS, I've never heard of this before. Pigtails belongs to both of you, so in this situation I believe you both need to work together on the plan that suits all parties. Mum for here and now & you for the after. What is important to remember is Pigtails loves her parents. All the other stuff, your relationship together, that's not her focus. She loves her Mum & she will lose her, as her Mum will lose her precious gift of Pigtails. I love to read how you are processing things & putting your daughter first. It fills my heart, both with joy & sorrow. I have taken a moment for you today, internet stranger, you & yours are in my thoughts. Please also take time for yourself, have a plan for you. There is an emotional element in this for you as well. You cannot be the best for your daughter if you don't also look after your own being.

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    1. I'll do that, thanks. Did you just make up a new word, "cluey?"

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    2. Umm No!? (I wish) We use it quite a bit in Australia. - 'kloo-ee' (adjective) A person who is clever, mentally quick and original. Also a person who is very perceptive, particularly in making smart remarks. - I think that definition sits quite well with Pigtails personality from what I've experienced on this blog, don't you? Please feel free to spread this new word among the Iowa community. *wink*

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    3. No such word in our dictionary, mate, but if it did exist, would fit Pigtails' personality well.

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  10. First, I want to say how much it stinks that we even need to be talking about a seven-year-old losing her mom. Just like parents shouldn't be burying their seven-year-olds, seven-year-olds shouldn't be burying their parents. It's just too sad. I am so sorry both of you are going through this.

    You've received a lot of great help. I'll add my vote for utilizing what hospice has to offer, which may be more than you might initially think, and it would benefit most of us to get hospice invovled sooner than later. Hospices often (usually?) have people who specialize (or at least are well trained) in dealing with children. Plus the nurses are just so, so, so helpful to both the patient and the family. I was going to go on and on about how wonderful hospice is ... suffice it to say if there's any way you can help encourage her mom look into hospice I think you would find it benefits all three of you, plus mom's bf.

    Take care of yourself as well as Pigtails. I know she will be fine (albeit sad), she has the most wonderful dad.

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    1. C'mon, Pigtails would be insulted if you called her a baby 7-year-old. She's ten, you know.

      I was hoping the family of Pigtails' mom or her boyfriend would be assisting with hospice and such. If they aren't going to step up, I will try and help her. Guessing her mother is without insurance now, will need to check and see if hospice is an option without insurance.

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    2. Anonymous12/18/2012

      I don't believe there is a charge for Hospice care ~ at least not here in NC. Praying for all of you. One sweet picture that may be cherished in the future is of them holding hands ~ all that is in the picture is their hands. Blessings. Also Maria Shriver has a book for children dealing with death. But it seems that you are already on the right track with your thinking. Praying for no suffering.

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  11. my brother died of stage 4 glio after fighting it for a year. he left behind a 20yr old, an 18 yr old & a 16 yr old. it doesnt matter the age of the child, the death of a parent rocks any kid to the core. trust me when i say this, NOTHING can truly prepare you. everyone wants to believe in divine miracles, its human nature. cancer is bastard. answer all her questions honestly. find out what she thinks she knows. more than likely, shes more intune than you think. kids are remarkable compartmentalizers. she may have just stuffed the truth down in a recess. forgive your ex for everything. no matter what wrong she may have done, she deserves your forgiveness. & your daughter needs to know that also.

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    1. Statistically, she's lived well beyond what others normally do in a similar situation. To have gone 5 years now healthy after being diagnosed is not very common. Unfortunately, after a period of remission, the cancer is back now in full effect, and nothing will stop it. Not even prayer.

      I'll talk to daughter tonight, probing to see what she thinks is going to happen here with mom. I'll also talk with her mom about end-of-life care and forgiveness.

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    2. You will all be in my prayers. Telling Pigtails Mom you forgive her for everything will be a cherished gift for her and for Pigtails. I know your faith is real and strong so you already know God commands us to forgive. The gift for you will be complete freedom and peace.

      My daughter still holds stubbornly to her anger towards her birth mother. Her faith is strong and we have discussed God's command to forgive her birth mother, not because she deserves it, but because it will set her free from the past.

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  12. I am sorry you are having to face this. I feel for Pigtails, my heart goes out to her. I will keep you all in my thoughts. Wish I had something better to offer

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  13. I can't offer any advice. I have absolutely no experience in this arena. I just want you to know that I am praying for Pigtails (and you and her mother and your family).

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    1. I second Maria's response. I am so sorry you and pigtails are going through this.

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  14. Anonymous12/17/2012

    I have lost an aunt and a dear family friend to glioblastoma tumors. It's a nasty, terrible cancer and I'm so sorry for the pain you and your daughter are going through..

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  15. Anonymous12/17/2012

    Beard,

    So sorry. I have a thought about one thing her mother could do.

    Before my dad died, he wrote me a letter. She may not have the strength to put pen to paper right now. But if she could dictate a letter to someone, sharing with Pigtails a memory or two, and what makes her a special person, in her own words, the letter will be a cherished item.

    - Mitch A

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    1. That's a good idea, the letter. A friend gave Pigtails two voice recording storybooks to work on with her mom. I'll also see if she can write a letter to her daughter, and will save it to be opened at the right time.

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  16. Anonymous12/17/2012

    Cancer sucks!

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    1. No duh, that's like saying dog poop stinks.

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  17. Rachael12/17/2012

    You've received so many great suggestions that I really can't add much more. I do, however, love the idea of having P's mom dictate a message that Pigtails can replay over and over in the years to come. I just know it will mean the world to her and help her to accept the loss of her mom.

    Pigtails is lucky to have such a strong dad, especially at a time like this - I so admire you. You guys are in my prayers.

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  18. Praying for everyone involved in this situation! My only suggestion would be that I think Pigtails needs someone there specifically for her when she visits her Mom from here on out. Seeing your Mom go through 15 seizures in two hours has to be terrifying, and I would assume that her Mom's boyfriend was probably attending to her Pigtail’s Mom and not Pigtails. Someone that can help comfort her, explain things, and pull her out of the situation if need be. Maybe that’s you or another relative, or a friend of Pigtail’s Mom, but Pigtails needs someone to walk through this situation with her, who is able to focus on her needs.

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  19. Beard,
    My father in law died of cancer two years ago on December 22. I remember how normal we tried to make Christmas for all the Grandkids that missed their grandpa. I remember dealing with the same kind of issues and questions. I don’t know that I aced it by any stretch of the imagination; frankly I probably stumbled through explaining most of what was happening in a way that a child could comprehend. In the end, it was our faith in Jesus Christ as a family that saw us through. It was the hope of a new body that was raised in glory and imperishable (1 Corinthians 15:12-58). I pray that the Holy Spirit will grant you wisdom, courage and comfort for both you and PT as you work through this. Blessings to you.

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  20. I am sorry. For you and your daughter, her mom, all involved. You are a great example. I'm no counselor, but I think it might be beneficial for you to also seek council...a Priest, somebody. You have suffered a great deal b/c of her choices. If you have more to work through to reach peace and forgiveness, it is easier when they are alive. And I found it very healing to be able to say, "I forgive you" to a person I knew who was dying. I also was grateful that I could do something to give him peace before he died. - 'Cause he was a real jerk numerous times to me.

    As for Pigtails and her mom....I wish I had my mother's voice recorded saying, "happy birthday, Dearest. I love you. You are wonderful. Pray for me and know that I am praying before the throne of God for you." I know it is a bit sappy, but I miss her voice and sometimes wake in the night shaking b/c I cannot hear her voice. I also wish I had her recorded reading a children's book so that my kids could hear her voice. Maybe that won't work for Pigtails' mother considering her current health struggles. But maybe there is something along those lines that you could help facilitate. Also, photos...of her hands...with your daughters. Ears (weird, I know, but when she is older, she might want to know whose ears she has.) Maybe even one last professional photo with the three of you. I'm not sure if that is possible, but it may be a great gift for all three of you and help bring much closure to everything...the divorce, the hurt, the frustration, anger, her life.

    I am so sorry. Prayers for a peaceful, happy and holy death for her...for the sake of all involved.

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  21. Beard,
    My thoughts and prayers are with you as you go through this difficult time. You will find the strength to do what is best for Pigtails as you always have done. May you be guided by Spirit to reach the decisions you may not want to make but have to. Much love from all of us, Martha

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  22. So sorry to hear this. My heart breaks for all of you. I wish I had some great advice to share, but all I have is thoughts and prayers.

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  23. My prayers are with each of you. If I were Pigtails, I would probably want someone to at least tell me my mom probably wasn't going to get better. But I have never had to go through this, so I might be wrong.

    I pray that all three of you know Jesus and experience the hope from Him that these horrible times won't be forever.

    Prayers from NY

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  24. My heart hurts for you both. I lost my mom when I was 12. A book that really helped my dad is "Motherless Daughters" by Hope Edelman. My dad said it really helped him raise me and my sisters through that. I read it this year (I'm 28 now) and it made me feel a lot more understood and less alone. Maybe it will help you both too. Praying for you and especially for Pigtails.

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  25. So after tucking daughter into bed tonight, I broke it down and told her mom is very sick and the doctors likely won't be able to fix her this time. She may have less than a year to live.

    Pigtails was shocked, covered her mouth and wailed.

    I thought she was aware of the serious nature of this one and simply was avoiding talking about it. Wrong. She's been optimistic and believed this was a temporary thing...a stick of chemo and mom would be up dancing the jig soon. She asked to spend time with mom everyday now. We'll try.

    The ex is without insurance, but I believe Medicare may cover the cost of hospice if she'll let them in. Also looking at Amanda the Panda program to see if that creepy grinning cub can help Pigtails open up and talk.

    They tried doing the recordable book together over the weekend, Pigtails says mom got frustrated after a couple pages (she's having trouble speaking) and said they need to stop. Maybe they can record one page per visit until finished. I'll also ask her mom to write the kid a letter as suggested in a comment above.

    Thanks for the kind words and prayer. You don't even really know us or her mom, we appreciate that strangers, people care.

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    1. Rachael12/18/2012

      Beard, I know all I need to know about you and your daughter. You are good, decent people who are worthy of our time and attention and we genuinely care about you both. The thought of this sweet little girl suffering the worst possible loss at such an early age just breaks my heart. I don't need to have met her to feel that way.

      There's no shortage of hideous cr*p on the internet but it is also an amazing way to bring people together. We've all seen that since last Friday. Strangers reaching out to strangers... only to find they're not really strangers after all.

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  26. Anonymous12/17/2012

    I am so so sorry for you and your daughter. I can't even imagine. I'm sitting here with tears running down my face. I wish there is advice I could offer but I have none. Your family is in my thoughts and prayers.

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  27. Beard, I will not rehash any advice from the other comments. What I will say is that I am in tears, thinking about Pigtails and the impending doom of losing her Mom. I think we all know that you are an amazing father and if anyone is going to make sure Pigtails has the love and support she needs, it's going to be you. I am praying for you, for Pigtails, for her Mom, and for everyone involved.

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  28. I also didn't read most of the comments, but I did happen to see one while scrolling to the bottom. The one where you said prayer wouldn't even help her. And I vehemently deny this in Jesus' name. Could God heal her? Absolutely. I witnessed a young girl with a tumor wrapped so tight around the base of her brain that they couldn't even operate things went in too far in "important" areas. People came together and prayed for her and God did provide the miracle of completely taking away her tumor over the next couple of months with no treatment.
    Will he heal her? Who knows. That is the mystery of God. He knows the bigger plan and how things should be. Regardless of prayers for her healing working, prayers for her as she faces her imminent death are probably much needed. I don't know anyone who doesn't need prayer, and I would say especially those that are close go going. Pray for her mental health, acceptance of what is to come, but mostly, that she truly has a relationship with Jesus Christ, because if she does, then I truly believe she is headed to the best thing ever. That, of course, doesn't help with those left behind here on earth hurting, but if you know she is in God's family, then you know her pain will be nothing but a thing of the past, and her death will be something to rejoice in. No more suffering, no more pain.

    He will wipe every tear from their eyes. There will be no more death’[a] or mourning or crying or pain, for the old order of things has passed away. Revelation 21:4

    I don't know if you have forgiven your ex for everything that happened in your marriage and your divorce, but if you haven't, I hope that it's something you can find here in her last days.

    As far as Pigtails, I think honesty is the best policy. Not things like "your mother is going to die", but if shes asks about her chances, something along the lines that "she may pull through, but probably not". I think both of you will appreciate in the long run a more gentler way to tell her the truth.

    I will be praying for you and your family

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    1. Her mom's lived 5 years since diagnosis, which is a miracle considering the average expectancy for glio' is 12 to 18 months. However, this latest bout is different. She's months from death now, and nothing will stop it. Doesn't mean people shouldn't continue to pray, daughter and I do daily.

      There are a lot of people in the world today saying they will pray for something, but then they do nothing. Talk it cheap, action counts, put some feet to those prayers. Praying for the hungry is good, but praying and actually DOING something to help the hungry is best. In this case of brain cancer, nothing can be done but prayer and preparation.

      I told Pigtails last night her mom will likely die within a year, because that is the truth.

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  29. Oh my goodness! I've read your blog for a few months now and though I don't know you, I know a little about you. I also know a little about losing a parent. I'm really glad that you somewhat broke the news to her tonight. As tough as it is, realizing that this is a terrible situation now will help her begin to cope.
    The awful fact is that this a really crappy situation and it hurts. As much as we, as parents, want to minimize the hurt that our children feel, pain is part of the process. Unfortunately she is going to experience a lot of pain in dealing with this.
    Many of the early replies were full of great information. Just keep doing the best you possibly can and love that girl like crazy!
    Hugs,
    Holly

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  30. Melissa12/19/2012

    I'm so sorry to hear this dire news. There is never a good or easy time or way to lose a loved one, especially a parent, even moreso for a young child. My dear sister inlaw lost her battle with cancer last spring and now we've just learned that my mother is facing a glioblastoma of her own. We have ups and downs, strong moments and weak moments. My hope for you and your darling girl is that you find moments of peace and joy during this difficult time.

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  31. Shannon12/19/2012

    No words of advice, but you don't need any more. You are a kind, loving, generous Dad to P & that is all she needs. Continue to follow your heart in guiding Pigtails (and yourself) through this horrible trial you are faced with. Agreed with a number of others above that you need to first & foremost ensure that you are well - you can't be strong for her & her Mom if you are struggling yourself - seek all the help that you need for yourself. We will be thinking of you & wishing you all peace.

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  32. Amber Brown12/20/2012

    I will be praying for Pigtail's, you and her mother. I know what it's like to be a little girl on the verge of losing a parent and I think honesty is the very best thing. Ask Pigtail's mother to write her letters for the major milestones in her life..16th Birthday, High School Graduation, her Wedding day, and the birth of Pigtail's first child. Get someone to record or transcribe all of the best memories Pigtail's mother has of the two of them.

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    1. That's good, letters for specific milestones. I'll try and meet with her mom this week before Christmas, and will suggest the idea.

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  33. I was in my late thirties when my mother was diagnosed with brain cancer, and my sisters and I were still just like Pigtails - we held on to the belief that she would get better for a long time. And while some people do conquer it, my mother eventually succumbed after a long, brave, tiring battle. We prayed and prayed and came to realize that even as believers, we are subject to the laws of physics, of biology, etc., etc. It is not giving up to come to an acceptance and it does not mean that God will revoke any miracles He has planned if that is what He has in the cards.

    I think at some point it will be necessary to be straightforward with your daughter and that you will realize when that time is.

    My condolences.

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  34. So sorry to hear. I was pleased when you said you told PT honestly what's going on. My mum died last year and I had to explain that she was going to die to my kids who were 4 and 6 at the time. The 6 year old was very close to hear and cried buckets when I told him that my mum had cancer and that she would die soon. Once I was open with them it was like a weight was lifted and we just dealt with them at their pace. We answered all they questions... including the the tricky one of 'what do they do with the body?' (our answer was... well some people are buried and they get a special sign with their name on it so they are remembered - we didn't think that they would like to know about cremation) and the equally as bad question 'kids can't get cancer, can they?' (our answer -errr, yes they can but it doesnt happen much).
    Kids are scared but at the same time don't always dwell as or mourn in advance like adults do.
    Remind PT that this time is special and let her take the reins and guide you through this with her.
    Take care xx

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Thanks for the note, check back for my response!