Bathed and Happy!
We came home without TPN!!! Without a pump! Without a line to flush! Without tubes to be cautious of! It is THE BEST feeling! Jake is so happy!!!!! We haven’t seen him this happy since we started all of this – a long time for a little boy. He’s been hooked to tubes for a good month, so this is freedom. Round 2 continues to go well, and so far, besides a little nausea this morning, we are keeping the nausea at bay with some good meds. And more praises… he’s taking them (the meds)!! No fighting it. That is a BIG deal. He’s eating, he’s drinking, he’s walking ALL over the house. When he was hooked up to the pump he had very limited accessibility since we had to pick everything up, be careful of stepping on tubing, or heaven help us pull it from his chest. Now he can get up and go anytime, anyplace… he can pee by himself! Although, mamma bear tends to intrude to be sure that the hands are washed. (Germs, ya know). Bacteria is our #1 enemy. AND he’s had a BATH!!!!! I’m sure the angels were singing! He’s clean… really clean. I’m giddy, I’m so happy. To see a kid who was truly at death’s door just two weeks ago bounce back like this is miraculous. They say we will yo-yo, but it’s hard to think of that right now. God is good! Today was good! We had the day to just be home and hang. Mrs. Jeanne came to play (thank you Angel Jeanne!). Leave it to Jake to teach Jeanne farting dinosaur games but his belly laughs are priceless. It allowed me to get things unpacked and begin re-packing. We’ve been informed to keep a hospital bag ready at all times – when fever strikes we have to be ready to flee at a moment’s notice. So his jammies, his special hospital sheets and blankies all got washed and put back. (I’m sure I’ll appreciate this when I’m packing for our next chemo). His counts are already dropping and he’s now neutrapenic. It gets there quick. He hasn’t bottomed out yet but we’ll find out tomorrow where he sits. As of Monday his ANC was 1500, Tuesday it was 800, not sure where he is today. We go back to TCH tomorrow for labs and a nasty shot of Nulasta. It helps the cells recover but also brings on really bad bone pain and flu symptoms. We’re hoping for a 1/2 day in the med center, but numbers are the name of the game. Low ANC is OK but low platelets and hemoglobin mean transfusions and that puts us there for at least 8-10 hours. We’ll be ready either way. At the moment it looks as though we are back for Round 3 around Nov 30th. And crazy as it sounds, the Transplant Division has been in touch. Our docs said intense, aggressive, and fast paced would be the course of treatment… they weren’t kidding. We’ll begin those discussions very soon. But for now, we will enjoy our good days, rest, prepare for a holiday of thankfulness, and pray that the Nulasta won’t take him down-n-out too hard or too long!
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Comments (15)
Heather stokke
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You guys are truly an inspiration! We celebrate these wonderful moments with your whole family! Love you guys, and please let us help anyway we can.
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Tracy
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I love that you are all at home!!!! To see that smile on Mr. Handsome’s face and to hear his beautiful laugh is priceless!!! GOD IS GOOD!!
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Angela Dina
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Sounds like things are a little better! Amazing how blessed you will continue to feel in the wake of this storm. I have felt as if God showed up each and every day and walked right beside me through all of this with our Charlie. Call me anytime! We are finishing radiation and headed to the stem cell transplant admission the week after Thanksgiving. So very much to be thankful for…
Much love to your beautiful family!
Angela Dina
Charlie’s mom
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mhickford
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So much to be thankful for indeed, Angela! A happy time for us right now and hopefully for you too. I’ve been following another little boy.. Nate. Today they posted that he is NED after 16 months. The happiest of tears I have for him today…I live to hear those words and I pray that will be Charlie very soon and Jake soon after that. I will call you… God bless and love to you too, sweet freind.
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Diane Pargin
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I am awe of all of your strength, God is clearly right with you all keeping y’all safe and strong. Sooooo glad to hear Jake had a much better round 2, and I absolutely loved reading about Kate’s and Jake’s weekend together. You and Henry have such wonderful, sweet kids..it warms my heart so much 🙂 I will be praying and thinking of Jake tomorrow when he has to have that nasty shot!!! Little man is so strong and brave, and I absolutely love his fighting spirit!!! Love you all!!!!
Diane
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Robyn Parker Scharlach
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Praise the LORD…He is good…He is soooo good! I just cried as I read your daughter’s post yesterday, I have a 10 yr old daughter as well and I see a lot of the same traits in your daughter. What a blessing kids are. I am so happy Jake is doing so well after round 2. I continue to pray for Jake and your family as well as his medical team. I have a super positive feeling inside that he is going to best this!!!! I will continue to follow the posts and, of course, continue praying. Keep the faith!
Robyn
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Mary Ann Day
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I am so glad he is home free from tubes and doing well at this point. So many of us are praying and we are going to continue to lift you up and pray for Jake. Love you all!
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Lisa DeLue
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SO great to hear he’s without tubes and doing well! Truly a blessing! Prayers for a happy, peaceful Thanksgiving!
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Erin
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I LOVE reading this! I love that you are giddy! I love that Jake is so happy!! This is wonderful and answered prayers!! Some questions – What’s neutropenic? And what is the transplant for? Praying the rest of this round goes ok, & that the nasty shot doesn’t make him feel too bad. I’m so glad they have that available though to help the cells recover. So much new medical stuff to learn. You are doing AMAZING.
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Missy Dollahon
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Okay I’m gonna leave another comment and check ‘notify me of new posts by email’ and see if that sends them automatically to my inbox.
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Missy Dollahon
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Yea!!!! So happy to hear good news!
Love y’all!!
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Sandy Roraback
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Such great great news! I’m so happy for all of you!
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Meghan
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I have to just add!
When I went over Wednesday, the FIRST thing out of Jake’s mouth was about how he was not hooked up to any tubes in his chest, he was so happy and excited about it! He has been SO active an happy! This has been such a great round thus far. Love you Jake! Love you mom! Love all of you so much!
AND! Y’all did so awesome with your flu shots today! So brave Kate! Cam, Ry and Emmi too! Love y’all!! 😀
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Meghan
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I meant Tuesday 😉
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Jenn
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I missed something, apparently. What is the transplant team all about?
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