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Up and Down Days/Scanning Tomorrow
By Margot | January 14, 2010
Sam has had up and down days in terms of pain.  On Saturday we all went for breakfast at Konos with Vickie Buenger, the inspiring Erin’s mom,  http://www.erinbuenger.blogspot.com/  and got to spend  some time with her at our house. Vickie, so great to get to see you. You were such a hit with the boys. Sam used the king square in chess you taught him to catch his dad’s pawn on Sunday.  Tanner came over afterwards and I took him and Sam and Andrew to go and see Avatar which they all thought was awesome.  Sunday he played baseball at the park with everyone and though he didn’t run, he stood and hit the ball and walked well. By Monday though, I thought I ought to write a post titled “Full Circle” as we had come back another 180 degrees to a somewhat painful day. When Sam has not been feeling well he has only wanted quiet and to be read to and me or Neil handy immediately when he needs us. We finished up The Prisoner of Azkaban and have started on The Goblet of Fire. Sam wants us to lay next him as much as possible and the bath still seems to help him painwise. Tuesday again was a good day and he walked some at the beach Tuesday night and we were thinking he might even go to school on Wednesday and we were talking about baseball.  His pain has been moving from one arm to the next and the leg pain seemed to have gone away so we were hopeful that it was tumor kill. Yesterday morning he woke up and his arm hurt too much to go to school and by yesterday afternoon, his leg pain was back with a vengeance and he said his whole body hurt all over.  I spent much of the afternoon trying to get his pain under control. I’ve learned this morning from the pain team that I probably overdid it a bit with the long acting stuff because if it all peaks at the same time we might be in trouble that we don’t want to be in. She said Sam probably has a tolerance for a lot of pain meds but that we should probably up the dose instead of giving more of them at staggered times.  He slept most of last night but needed another pain pill at 4am.  Today it just seems to be his left leg and he is better than yesterday. Maureen came over yesterday afternoon and spent some time with us and Uncle Matt showed up later.   Sam’s LDH is 3700 and his HVA/VMA is 92 and 117.    We had been told that the earliest MIBG we could get was mid-February but then the nurse called yesterday and said she could get us in Friday at 4 and for the scan.   We had the injection this morning and were hoping to do vinblastine today. We didn’t do it on Monday with Rituxan because Dr. Willert was worried about Sam’s platelets. They were 70 but only because of the transfusion he had the previous Friday.  Today they are only 39 so we are too low for vinblastine again. We are sitting in limbo now. Neil has been working tirelessly on an alternative plan. It may involve gleevac but we are not sure.
Andrew and Charlie have been hanging in there. It’s been tough on them to be home when Sam is feeling rotten because they have to stifle a bit and if you know Andy and Charlie well you know that they are not all that stifleable. Thanks so much to the Brunettes for taking them both to basketball on Monday night. I sat and read to Sam which as nice and quiet.   We actually took Andrew up to the park on Tuesday night in the dark and I had him run from the car to the light ten times. He thought it was great fun.  I brought Andrew in to the child-life specialist on Tuesday to have his own time to talk to someone outside the family about things. It worked out well and he really liked it. Heidi said he’s a great talker and he told me he had a lot of questions for her.  We set a time for every Tuesday and he’s working with Heidi on a book about himself. Unfortunately his therapy hour has also had the affect of  planting  into his head that Sam gets all the attention and he doesn’t get any.  This thought has been driven home to him in the last couple of days because Sam has been in pain and is getting most of the attention from us and has been demanding it.  We have been trying to steal time with Andrew and reassure him how much he is loved. It is a tight rope.
 Charlie has been happily rolling along having playdates with Jett and playing with Elizabeth who I credit totally with keeping his routine and happy attitude consistent . He seems to be becoming less shy and coming out of his shell some. He actually went to playdate at Jett’s house with no fuss at all on Saturday while I took the boys to the movie.
Please say some prayers and think good thoughts for Sam.  I will post after Sam’s scan on Friday. Andy has a basketball game immediately following so it may be late on Friday night.  Things have been so up and down that it may be that tomorrow things are totally different.
Margot
Topics: Progress Reports | 16 Comments »
January 14th, 2010 at 8:48 pm
I am sorry to read about Sam’s pain.
We are praying and thinking about and for Sam every day.
January 14th, 2010 at 9:12 pm
Lots of prayers for Sam, or course. Also praying for strength and wisdom for the rest of the crew.
January 15th, 2010 at 12:31 am
Oh Margot so sorry to hear that the pain has been bad….watching your child in pain is torture…my three other kids had different issues thoroughout Nates journey and I found that if we do our best to always let them know that they are loved that everything had a way of working itself out. As always we are praying here in Wa…will add some extras for the pain and for Mom and Dad 🙂
luv
Abra
January 15th, 2010 at 12:58 am
Thinking of you and keeping all of you in our prayers.
January 15th, 2010 at 2:11 am
I am so sorry to hear he is in pain! I’ll be praying for Andrew as he is having to share his mommy and daddy. I know it must be really hard on you trying to juggle them all and feel like you are giving them all what they need! Prayer definitely going up for your family!
January 15th, 2010 at 2:24 am
People say firefighters are so courageous. I’ve been one for 28 years. At times, maybe. Infrequent at best. However; I’m so sick of hearing that phrase! Why? Because I know the truth. The Hutchison family has true courage! Not every day, but every second of every day! Drugs, pain, discomfort, fatigue, the hospital, life inconveniences. Yeah…. That’s true courage. And love! Selflessness, Giving, love…
January 15th, 2010 at 3:04 am
YOu are always doing your best for all the little guys. Siblings that have non-sick siblings feel jealous of each othet. That is always the way it is. All your children know that they are very loved and that is a good thing. Thinking good thoughts…. Angela (Madison’s Mom)
January 15th, 2010 at 7:32 am
When Sam is hurting and having a bad day, I cry. When he has good days, I smile and thank God. You are all dear to my heart and I am praying for the young ones who don’t understand and especially for the ones who do. I pray that you will have the strenght to cope and the wisdom to know what to do and when. Sam, Andrew and Charlie are so blessed to have parents like you. Please know that God and I love you. Angel Mary
January 15th, 2010 at 3:32 pm
Sending prayers for pain-free days. Jan
January 15th, 2010 at 3:48 pm
margot, i am so sorry to hear about sam’s pain. know that i am thinking of you and your 3 beautiful boys. you are supermom in my book. sending you continued strength and love, mooki
January 15th, 2010 at 5:25 pm
I’m a friend of the Mikulak’s, and just wanted to let you know that your family is in my thoughts and prayers.
Much love,
Leigh
January 15th, 2010 at 10:05 pm
Dear Margot and Neil, I am thinking about Sam and your whole family.
Much love,
Catherine
January 16th, 2010 at 3:38 am
Dear Margot and Neil,
Just happened to read Andy’s comments about Sam’s
currant difficulties today.I experienced an awful wrenching back
to the period when my family was experiencing such anguish
over Max’s fight to live. Thank you for diverting my attention
away from the petty,insignificant issues we all pursue for
comfort. God be with Sam and your family.
John (Andy’s dad).
January 16th, 2010 at 4:29 am
Here’s hoping for good news from the scans today ! You are doing an amazing job of parenting three darling little boys and Neil is fathering superbly also!! Keep the love flowing…
we love you all and are behind you all the way !
Hugs to all,
Colleen, Nick and gang
January 16th, 2010 at 10:14 pm
Praying for good results!
January 17th, 2010 at 3:57 am
Margot and Neil, just thinking about you all and wishing for Sam’s comfort- you are all in my thoughts and prayers often and I continue to wish the very best for your sweet boy….
Julie