« Bonescan Today | Home | Running »
Lines
By Margot | March 11, 2010
Sam ‘s got several different lines and every day I untangle the dilaudid drip from the saline or now the TPN and the oxygen line that somehow manages to sneak it’s way in there. Unfortunately after checking the pumps and pausing them for mirapenum and other infusions all day they are completely snarled again by the following day. It’s similar to what my brain has been feeling lately. I’ll think I have a clear vision of what is going on and then things change for the better or worse and I’m completely snarled up again.  Sam had a few long nights the past weekend. One night he had a nosebleed and he kept coughing up blood that was going down his throat. We’d get it under control and then it would start up again. He had low platelets. I thought I had it under control while he slept but when he woke up in the morning he coughed up a huge amount of blood scaring the crap out of him and me.  The following night he basically coughed all night but no blood since he’d had platelets.   Then went things went much better. He had a great few days and nights.  His liver numbers are down again, they are still high but that last few blood draws have them definitely going in the right direction and by quite a bit.  His pain was much less frequent and since we upped his pain medication, he’s hit his pain button a lot less. We are getting ready for the Samarium infusion at UCSD which should help with his pain. According to the doctor who infuses it there are no side effects except that their may be a pain flare before the pain gets better. He said that it can be controlled with steroids.  Neil also has a line on another treatment at UCSD (thank you John London for your help with that) with great promise that in terms of a Hail Mary pass would be thrown by Drew Brees and caught by Antonio Gates.  We are still getting platelets every couple of days and have gotten blood twice this week so far. Sam has been building legos and reading. Yesterday Blake came over and he and Sam played video games for an hour which was awesome for Sam. Thank you Blake! It did a lot for Sam’s spirits.  Liz, our home nurse came, over yesterday afternoon and gave Sam some lasix for his edema and set up TPN for us. Then last night Sam breathing got worse and he had a pretty hard night for the first part of the night. We ended up giving him more lasix at about 10pm to try and help with all the fluid and he seemed to do better after that. His oxygen sats without oxygen are very low and we have cranked up the level of oxygen quite a bit.  Hoping that regular lasix will help get all this damned fluid under control. We are doing a CT today to see what is going on in the lungs and then we will decide what to do about samarium and when.  Sam has just been so sweet saying “Thank you, Mom and Dad,” after Neil and I together help him get through a bout of coughing and spitting and giving him his inhaler to help open his lungs and my heart just breaks into a million pieces.
I’ll leave you with a funny Andy story and one of his insights:   Colleen volunteered in his and Jake’s class today. They are learning about air and matter and the fact that all matter takes up space and she said that Andy raised his hand and said, “my brother is on air right now and maybe I could tell you all about it, it takes up a lot of space.” He’s thinking about the ginormous oxygen tanks in our living room at the moment. He also told me the other night when I was putting him to bed, “You’re just not that lit up lately, Mom.” and I said “What do you mean, lit up?” and he said, “You know, happy.”  That about sums it up.
Thanks to everyone for their help. Charlie boy is doing fine. Less aware of everything going on and still his happy little self.
Working toward getting Sam’s edema under control with regular lasix and then we will go from there.
Margot
Topics: Progress Reports | 26 Comments »
March 11th, 2010 at 7:00 pm
Hard to be lit up when there’s so much to untangle. I love you all a bunch and hope that you know that.
Vickie
March 11th, 2010 at 8:55 pm
You all are “so” in my prayers continually.
Love, Bev.
March 11th, 2010 at 9:16 pm
A ICU nurse taking care of Nick after his heart surgery once called all his lines ‘spaghetti’ She would come in 2x a day and exclaim – “time to untangle the spaghetti” – I believe it is also possible to have ‘spaghetti brain’ when in a stressful situation. As for the ‘Lit’ I can temporarily cure that with a strong margarita. You are always welcome to pop-in.
Hopefuly the O2 company geve you a humidifier bubbler, and some nasal lubricant for sam-o to alleviate some of that dryness.
We love you guys –
March 11th, 2010 at 10:06 pm
Praying for Sam to feel better soon and for your whole family to be “lit up.”
March 11th, 2010 at 10:07 pm
I love you my brother and Margo – On the way to SD now. Sam I love you.
March 11th, 2010 at 10:40 pm
Thinking of you with great love and concern and sending up constant prayers. Shirley & Gang
March 12th, 2010 at 12:02 am
Neil and Morgot,
I don’t believe I have ever signed Sam’s page. I have followed Sam mostly through Neil’s posts on ACOR. I am so sorry that things are so difficult right now. We will keep Sam in our prayers.
I have to thank you, Neil, for all of the advice and encouragement I have gleened from your ACOR posts. Not long after my nephew was dx with NB, I found ACOR. Watching threads between Neil and John London, and Henry Malarkey, etc… showed me what we needed to be prepared for in this world of NB. A few months ago, when we found Tanner had relapsed, I was able to go back to threads I had copied and saved as a guide to where to begin looking for the best options. Although you never knew it, you have been a godsend. Thank you from the bottom of my heart.
I pray that God will keep you all held close and secure in his arms.
Blessings, Tanner’s Aunt Katie
March 12th, 2010 at 2:31 am
Just a note to tell you that we are thinking of you always. Sam and all of you are in our every prayer. Please know that we are with you in spirit, in hope, in faith, in friendship, and in belief that there will come a day when we can join hands and be ‘lit’ together.
Your friends,
Sarah and John Bartosz
March 12th, 2010 at 3:32 am
Constant prayers and more love than I could ever describe. Your family is so precious and beautiful–so much awe for all of you….and much heart ache for Sam…
LOVE LOVE LOVE
March 12th, 2010 at 4:08 am
I love you all and wish we lived in San Diego to do something, anything for you. Know that I think of you guys every day and always hoping for a little light for you all during the hard times.
Love, Nicole
March 12th, 2010 at 4:14 am
thinking of you all every day and hoping the stars come out in full force to help lighten your dark days and nights.
prays and love always,
the Kuhn’s
March 12th, 2010 at 4:47 am
just spoke with you minutes ago Neil…
please give Sam, Margot and yourself hugs from all of us in
Pittsburgh.
I so wish we could take away Sam’s suffering and pain…
We are here for you always,
much love and prayers,
Colleen, Nick and children
March 12th, 2010 at 4:52 am
Hey margs- I know we have been playing phone tag for the last few days… But please know that I am thinking of you constantly. Let me know if I can help. I can get there in no time at all…
March 12th, 2010 at 8:02 am
I LOVE YOU SAM , MARGOT, NEIL, ANDY, AND CHARLIE LOTS <3 hey sam i want you to practice alot of chess coz im coming over ther to kick your bum ok.
im just saying that i love u alll heaps!!!!!! hehe
Neil get uncle matts dog ( cant remeber his name) and make him lick all threee boys right on the nose.
BYA
love marty
March 12th, 2010 at 9:39 am
As I read your posts, and those of others trapped in insanity of “cancer planet,” I am in awe of the strength, support, love, and courage of all the NB families. My heart goes out to all of you. Wishing Sam days free of pain and fear, and filled with smiles. Hope that the Samarium – named after him, undoubtedly – brings relief.
March 12th, 2010 at 10:58 am
Sending some early morning prayers from the east coast out your way! Thinking & praying for ALL of you.
With hope,
Doris
March 12th, 2010 at 3:59 pm
Margot, Neil – call us anytime you need to talk, vent, be angry, cry, whatever. We know the tangled emotions you’re battling. Sam is the most valiant warrior of NB I’ve ever seen – as are you.
March 12th, 2010 at 4:02 pm
Neil, Margot, Sam… we’re praying, praying and hoping, praying and believing. Sam, you’re the strongest kid bravest redhead I’ve ever known. I want you to know that so many people on this earth are pulling for you, loving you and hoping you are out there on the basketball court again soon.
Love, The Mikulak Family
March 12th, 2010 at 4:22 pm
Margo and Neil,
It has been a long journey for you and your family. Along the way I have been in awe at your never ending strength and determination to provide Sammy with the best possible medical care which you have.But just as important you have showered him with your love.Your never ending support to care for him physically and emotionally have left me in awe of a parents love for their child. You have met every challenge head on and have never waivered in doing what is best for not only Sam but for Andy and Charlie also. Tirelessly you have fought and in doing so you have shown the world what being a great parent is. You have taught us that each day is a gift to be celebrated and that nothing is to be taken for granted. There have been times that I have forgotten that but not anymore because of you and your family. Please know that each minute of each day you are surrounded by the love and admiration of many. You have inspired us to live our lives better, to hug our kids more, and to tell those we love how much we love them. Thank you for sharing your journey with us. You have opened our eyes to the world of NB families and the need for all of us to step up and take action. Like Sammy said “You are the best” and so worthy.Sending good thoughts for strength and courage as you care for your family.
March 12th, 2010 at 4:38 pm
Dear Marg,Neil&Sam,
I just finished writing all of your St Patricks Day Cards; and am sending them out with your Dad but, right now, I am sending to youall; all of the strength, courage, all of the LOVE,Prayers and Hope in the world! May the “Luck of the Irish and God’s Blessings be upon you!”
Much Love, to Andy and Charlie, and to Elisabeth too.
Much Love, Mom, “Grandma Sara”
March 12th, 2010 at 6:04 pm
Lois’ comments (above) capture the essence of what we are all feeling right now – – tremendous admiration, love, and sympathy for you, Neil and, especially, Sam. Andrew and Charlie are very much on our minds as well. It is all so unfair. Marty and I would do anything in our power to reverse/wipe out the history of the last five years, and to bring you comfort.
We are on our way to you, with love and whatever help and comfort we can provide.
March 12th, 2010 at 8:03 pm
I came across your website through the Band of Parents and wanted to extend my thoughts and prayers to all of you. We went through a similar situation when our Adrianna passed away in January from Stage IV amplified NB. She was sent home from Sloan Kettering and they could no longer do anything for her. We were shocked and could not believe that we had to put her on Hospice.
Now we are learning to cope without her, and I say this to let you know there are many of us out there who know what you are feeling. We are praying for you and your miracle. We are praying for strength.
From one NB family to another,
Stephanie Cavanagh
caringbridge.org/visit/adriannacavanagh
March 12th, 2010 at 8:58 pm
We are a NB Stage IV San Diego family had our boy Aidan (six years) old at Rady’s at the sametime once. Neil may recall my husband Ryan. I frequently check on Sam and your family although we don’t know each other I think we are all connected by this nasty disease. I once was holding my baby and my 4 year daughter in the waiting room at Rady’s when I saw you pass by with your boys to visit Sam and Neil. I wanted so much to reach out to you and hug you…but I didn’t for the fact that you needed to get to Sam.
I am sending positive thoughts and great prayers that Sam does amazing through all of this.
I am on Acor, so if you are ever looking to find me I am there.
God bless!
With Hope for a CURE!
Jen Inman
March 12th, 2010 at 9:05 pm
You are all such an amazing family. You manage to try everything possible and deal with all challenges that keep coming with such grace.
You sneak in the fun too.
My prayers and mega-positive thoughts are with Sam and all of you….
Love from NYC and the Kennedy’s
March 12th, 2010 at 9:28 pm
Sam is such an amazing child and is so lucky to have such great parents. You’ve done the best job anybody could do, both in therapy, and in helping Sam have as much a normal life as possible. Words cannot describe the emotion I feel for all of you. Nina and I will continue to pray for all of you.
Paul, Nina, and Angel Eden
March 12th, 2010 at 9:28 pm
You are in my thoughts and prayers.