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| During transfusion...the chocolate chip cookie was just what she needed ... for lunch :) |
During our visit with her oncologist he verified that she wasn't taking any medications. "None," I affirmed. "Not even the Sceptra?" he asked. "Nope." and then it dawned on the she is suppose to take the Sceptra, a weekend antibiotic twice on Saturdays and Sundays. I totally blew it this past weekend. He reassured me that "these things happen." He asked how she was feeling, how her energy level was. "Oh she is doing great! She is climbing on the playset, jumping on the trampoline...." It was then I noticed his startled expression and he informed me he wasn't suppose to be hearing those activities performed by a little girl who has such low platelet numbers. I think that was strike 2 for us. Well, now we know. But I really had no idea we were suppose to be so careful! It's impossible to keep Clara from playing when she feels like it. It might be easier if she didn't feel like it, you know? I guess I need to adopt some helicopter parenting techniques I am not good at.
We hope that we are on target for surgery the beginning of September and head to Seattle for transplant the beginning of October, but we know how timing can change. I think that with this schedule the boys will start school back home, even though they don't want to. The time after surgery we were told can be demanding. They will go with us to Seattle and the doctor told us today to expect about 3 months for that ordeal and then we will come back to Spokane for radiation and "other stuff" till May/June. And yes, I'm trying not to think about all of this.
Meanwhile, all of us are enjoying being together. A couple of nights ago Kate and Clara fell asleep holding hands and I couldn't keep myself from tearing up at their sweetness. It was a little sign to me that what Clara needs right now is her family to be with her. I hope these days will give her the boost she needs for the trying days she has ahead of her.
6 comments:
You have me tearing too. We are so proud of all of you. You truly are an amazing family and YOU give ME strength. It was so fun to have Baden hear for a while this morning. I'm sure he wondered why I kept kissing him.
Thanks Natasha for letting your family trial be a strength to all of us. I enjoyed reading the article in the Herald this morning. We will keep all of you in our prayers, and know that my house could be a drop off for kids ANY ANY ANY time that you need to!
We had a little scare with our 5 year old boy this week. He started bruising and we ended up at Primary Children's hospital in Salt Lake City to try and figure out why his platelet count was 14,000. We saw the doc's in Ocology/Hematology. Low platelets are one symptom of Leukemia, but fortunately they ruled that out. It was so stressful for 2 days. I thougth of you and how you are doing this for SO LONG. We found out that he is going to be fine and just have to test his platelet count once a week. But, I thought about how it would be to be there for a long time...to live there with him. Those are some hard thoughts to have and hard tests to go through, but you were an inspiration to me over those short days. We have had to keep him from jumping and riding bikes (his favorite things), and getting kicked in the head by his sister and such. It's really hard to keep a kid from playing who feels like playing...you're so right. Your family is still in my prayers. Thanks for the inspiration :)
What a sweet post Natasha! Isn't it a comfort to know that we do all we can and the Lord makes up the difference! In so many ways! You're doing a great job and I love that your family is together! There's nothing like family to buoy you up! I'm sure Clara loves it! Love and prayers to you!
Hang in there Natasha! And I hope you are printing your blog and cherishing it in a big looseleaf journal. I agree forgetting meds is normal and having Clara home playing was so normal and beautiful. Know that we all love you! Caring for a sick loved one is a cherished experience. Hold her close and laugh. And thank you for tearing up with the holding hands sisters...hurray for family! We love you and folks ask us about Clara everytime we wear our Clara shirts! You are on our minds and in our hearts and prayers. We love you!
Oh my gosh Natasha! I totally forgot to give Anderson his Sceptra too!!!! It was so random that it was SO easy to forget! {We let Anderson shoot a BB gun with low platelets and you should have seen the huge black eye he got when the gun kicked back---doctors didn't like that either} Just have Clara give them her beautiful angelic smile and all will be forgiven! You are doing such a fantastic job of documenting her story both in your journaling and in your amazing photography. Thank You! :) Amy
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