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Coming Home Today
By Margot | August 26, 2009
Sorry for the lack of update. Sam and I will be on a plane tonight at 6pm. No fevers yesterday. Pain under control. Ate a few bites yesterday and perked up a bit. He is so happy to be going home. He has been through hell and back, and since he is back I can write this cheery “wohoo we are going home” post. But Monday was hard. Hard. Hard. Sam threw up almost all day and all he had was gatorade (what he wanted to take his medicine with) and his meds so I won’t be surprised if he’s not a gatorade fan for the rest of his life. At one point when I was trying to give him his sodium perclorate (sp?) -protects this thyroide- and he was having none of it and we were getting behind in his medicine schedle to protect his thyroid. I tried to give him a ginger pill to help his stomach and he was having none of that. I took the the ginger pill bottle and threw it at the wall and yelled the f-word. Sam’s pain was terrible and we didn’t get it under control until late afternoon. Dr. Maris and I talked about adding a self administered morphine pump for him during the scan but it didn’t become necessary because right around the scan time, he turned the corner on pain. He couldn’t put any weight on his right leg at all and lifting him on to the scanner machine, I felt how much weight he’s lost. The scan was a horror show. A kind of heart racing, sweaty, I feel like I might pass out before this is over kind of scan. Dr. Maris says that they don’t use that scan for anything other than checking that’s the MIBG is being uptaken by the tumor. So, on the up side, Sam’s bones sucked up the MIBG like nobody’s business. Dr. Maris came in in the beginnning of the scan and looked at Sam’s right leg and said, “Well I’m not surprised that there he having pain in that right leg, look at it, there must be a lot of inflammation.” That gave me a little bit of solace that the pain must be the MIBG blowing up the tumor in Sam’s leg. Dr. Maris said the worst case scenario would be not to see any uptake with the pain Sam was having. Also, good news is that the arm that was giving him so much pain when he came in with Neil is not bothering him at all anymore and he’s using it with no problems. Uncle Matt was here with me the whole time,came to the scan, brought in everything Sam requested and food for me and Sam and even wine for dinner – me not Sam, and he helped me pack up everything last night. All I can say is Thank God for him, he was an awesome moral support and great for Sam to have here. Thank you Uncle Matt.
Yesterday was much better. The pain had subsided and Sam was unhooked almost all day and on oral morphine. He put weight on his leg and was much cheerier. Robert and Laurie (two of my long time authors and friends) came and hung out with us some last night and it was great to finally get to meet them after all these years on the phone and Internet. Nancy Goodman also came by and brought Blokus which was perfect. Sam loves the game and ours has lost all of its peices. Sam beat Uncle Matt who tried to fudge how many tiles he had left but Sam recounted for him. 😉 I put his hearing aids back in and we read four chapters of Island of the Blue Dolphins last night. He really liked it and kept asking me to read more of it. He’s watched a lot of age inappropriate movies while we were in here. Matt and I got him a lot of John Hughes movies. He thought Sixteen Candles was really funny but I’m hoping the whole, “I’ve never bagged a babe” part went right over his head. His taste buds are totally fried and though he ate some (by some I mean a few bites) yesterday he can’t taste much – a normal part of MIBG. It’s looks like we contaminated his PSP, we’d wrapped it but he didn’t like feel using it with the plastic and his gloves were not always on. We may need to leave that here with the radiation safety guys and come back for it. Matt was scanning everything last night as he was leaving and I held my breath as he scanned my laptop. He came in and gave me a grave look and then said, “just kidding.” Almost gave me a heart attack.
Sam is still sleeping but we should get out of here sometime this morning, go to CVS for his meds (morphine and zofran being the most important) and then maybe the Franklin Institue if he’s up for it. I don’t think he’ll be up for much walking though so we’ll play it by ear and take it very easy. We might not have that much time anyway. Can’t wait to see Andy and Charlie and Neil. We missed them so much. The greatest were Andy’s phone calls. He was so sweet and called and wanted to talk to his brother and me every day. He worked really hard to tell us what he was up to and it cheered Sam up. Charlie would only talk to us twice but I’m hoping he’ll forgive us when we get home. We are scheduled to come back here on October 6th and 7th (I think, or else it’s the 8th and 9th) and then start the second MIBG treatment on October 19th. Diane, Dr. Maris’s nurse said that we might not see ANC drop too much with this one, platelets will drop but it’s takes longer than with chemo – two to four weeks and then the second treatment we’ll probably see ANC drop and may need our stem cells. So, getting ahead of myself. Today we will go home and there is a little boy five feet from me who is very very happy about that fact. It will also make two little boys and their dad at home very happy.
Margot
Topics: Progress Reports | 18 Comments »
August 26th, 2009 at 2:38 pm
So very happy to hear that you and Sam are “heading home”. Praying you have a good trip back.
August 26th, 2009 at 2:54 pm
So happy that you are ‘goin’ back to Cali.’ There is nothing better than sleping in your own bed. Can’t wait to see you all in a few weeks.
August 26th, 2009 at 3:32 pm
I love that Sam so quickly lets go of the pain and moves onto the good stuff – games, fun, visiting, reading…what an amazing kid. It seems the MIBG is doing what it’s supposed to do. You and Neil have again done a great job with strategy. Thanks for sharing the ginger pill moment – remember that research shows that cussing can be therapeutic! So happy that you’re on your way HOME. Andy and Charlie will certainly bring more smiles for Sam and you.
August 26th, 2009 at 5:11 pm
Marg, So very happy you and Sam will wing your way back to SD! Soy y todos tienen mucho feliz aqui en Nuevo Mexico especialmente su Papa Y Estefani! Now Sam can enter fourth grade on time!! I bet Colleen knows who his teacher will be also! (and Andy’s too, for that matter!) I can’t wait to hear about Sam being in the swimming pool with Joe playing “Marco Polo” and “Water Football”(their own special version) Sam is such a good swimmmer having taken lessons since when?(6 months old?) It will be great exercise for him and it is non weight bearing for his right leg! I have some great 4th grade books for him Judy Blume and some Junior Literature that Effie’s daughter “Tommi” donated from her new Charter school (which is very advanced,by the way)) All we teachers are shouting for joy Sam is out of the hospital; and will be able to enter fourth grade on the first day of school!! Thanks to “His angel”(Mother) and male angel (father) School will be “his salvation!!” Hooray Hooray!! Con Mucho Amor! “Mom” “Grandma Sara”
August 26th, 2009 at 5:28 pm
Thinking of you two today crossing the country. Yay!!! Can’t wait to see you and play with all the boys!
Keeping the faith,
Meredith
August 26th, 2009 at 6:30 pm
I’m so so happy to read Sam is feeling better, that Dr. Maris saw the desired uptake on the scan, and that you are heading home!! Sending warm thoughts from NYC, shirley (nb friend of neil and mom of simon, age 15, treated nbiv 98-01).
August 26th, 2009 at 8:05 pm
hoping you are on your way to “all of 9” and more. home will be joyous. safe journey. Jan
August 26th, 2009 at 9:57 pm
Great news. What a trooper (both of you). THere is NO place like home, IVs and no beeps. Havea restful flight!
August 26th, 2009 at 11:02 pm
Hooray!!! Back to SD for the two of you ! Once again, Sam shows what he is made of… full of toughness and strength, but also love,
joy and energy ! Keep it up Sam ! You ROCK !!!!
Love to you all and best wishes for a joyous reunion together !
the kuhn’s
August 27th, 2009 at 12:38 am
So happy you guys are coming home. I can’t wait to see you at school Sam and Andy!
August 27th, 2009 at 1:05 am
Glad to hear you are on your way home! The best place to be. Sending good thoughts your way.
August 27th, 2009 at 3:52 am
OH Margot- you porr thing- I know it is hell to watch your child being sick- wishing you all health. Looking forward to seeing you all at school. Angela (Madion’s Mom)
August 27th, 2009 at 4:14 am
when i saw your blog was updated i held my breath and was so happy to see that you are going home as the topic. and even more happy to see that they have things under control. cant imagine how neil is doing with you two on the other side of the country! lets keep hearing good news and sam keeps doing well.
August 27th, 2009 at 12:19 pm
Thinking of y’all! I am glad you are coming home. I am sorry that the week has been so rough. I hope round 2 is easier. We are all praying for a dramatic response!!!
love,
Erin
http://www.carepages.com/carepages/patrickchance
August 27th, 2009 at 8:57 pm
Yay!!!!!! I’m so glad you guys are home & that Sam is feeling better. If he’s up for it-how ’bout you & the Monaco boys come over to swim tomorrow??? (it’s finally hpt enough!!)
Big hugs & kisses to all of you! M
August 28th, 2009 at 11:24 pm
I too am very happy hear that you are home. Such sweet relief to close that chapter – MIBG 1.
xoxo
Lara
August 29th, 2009 at 12:32 am
Hi:
So glad to hear you are finally home! What a long haul you had. Brittany continues to be completly wiped out and has needed platelets twice and 2 untis of blood with reactions each time. Hopefully Sam’s counts will stay high enough not to need anything. Our next visit is October 13th, so maybe we can chat again. Take Care, Michelle and Brittany
P.S. Brittany wants to know who Sam’s favorite Packer is?
August 29th, 2009 at 1:01 am
Dear Sam,
You’re as cute in real life as you are in the photos. Thanks so much for letting me come visit you. I hope you beat your Uncle Matt mercilessly in Blokus.
Love, Nancy