Last week was a difficult one. It started with a 10-hour day at the clinic with Sarah having a spinal tap then a couple of infusions followed by routine IV hydration. The spinal tap took twice as long since the doctor couldn't get the needle in the right place to get fluid out so they tried twice and finally got it to work. It took a long time for Sarah to wake up after the procedure, and she has had a pretty sore back since then. Sarah was so happy to have her friend, Alex, come to the hospital to help pass the time. And as you can see in the picture, the girls did some great crafts that Kristen, the Child Life specialist, brought to the room. The girls also got lollipops from Daisy in the coffee shot in the lobby - those always seem to bring big smiles.
I had to go back the next day with Sarah to be trained on giving her a shot so I could do the shots at home. She has to have shots four days in a row (same for next week). So, I have had to scrub up and inject chemo into Sarah's leg this week. It burns her going in so she cries until I can get it all in and then stop to massage her leg. I feel just awful and really don't think that I will be able to do it again next week. I am still devastated by last week and the pain in my heart is still so fresh.
I am so happy that this is our last phase of intense chemo. We are all struggling with being secluded and anti-social and bound by medical visits. Even though the upcoming 2-year maintenance won't be completely easy, I have hope that we can enter into social life again as we are in such need of fellowship and friendship. We have seen so clearly that this is impossible to continue to go through without support of those around us.
This phase has gotten Sarah down, and she has been in tears saying she doesn't want to be 'special' anymore just a normal kid. We have had all the talks about how chemo is such a blessing, and since it was discovered, it has helped cure so many. Even as I say it though, I know that I would have fallen apart way before now. Sarah really has been trusting God from the beginning and it has encouraged me to see it.
Yesterday she asked Jay if she would have gotten Leukemia a long time ago, would she have died. Jay said that yes, she most likely would have since before the 70s only 14% of kids with Leukemia survived. Hannah heard the conversation and got really upset saying so Sarah wouldn't die. Hannah didn't grasp what they were talking about. She was just so upset to think that Sarah could die at all. None of us really allow ourselves to think about losing Sarah. It is just too possible to even let our thoughts go there for a minute. I know how Hannah feels.
So we continue on, even in this harder time we find ourselves in right now. Thank you for lifting us up in your prayers, and we pray and ask God to help us continue this journey bringing Him glory.
6 comments:
We are praying for you all. So grateful that Sarah wasn't awake for the spinal tap...TAPS!! Wonderful she had a friend come to lift her spirits, what a gorgeous picture.
Praying for the friends about to enter your life. His love endures forever.
tess
I am so thankful right now that God's love endures forever and through all things and at all times!!! May his love be the oil that heals your hearts, and we will be praying for this next week to go by quickly!
continuing to pray. Love you!
Sarah, Mom and Dad, I am praying for you tonight that you rest well and feel better tomorrow. I have met you through your postings and through your Grandparents visiting FBC Frisco and our class on Sunday. We'd love to help you guys however we can while you are in our area. Let us know how we can help you. My email is ruthrgreen@tx.rr.com Praying God will continue to heal you back into the perfect child he made you to be. What a strong, brave little girl you are. Your mom and dad are really brave and strong too and they love you sooooo much.
Jay, I met your parents at church on Sunday and your mom gave me the address to this blog. What an amazing roller coaster your family has been on these last few months! Even reading it all, I cannot imagine what y’all are going through!
I see that Ruth has already posted, but I want to add the “amen” to what she said about our Sunday school class wanting to be a part of your support network.
Other than our prayers, which you already have, what can we do for you, Anne, and the girls?
Contact Ruth, or you can reach me at sherryj75034@yahoo.com
Sherry
Hi Anne,
I read your post from yesterday and said: "Shots, huh." It has been only four months since I had to give those same shots to Ben and I had completely forgotten about them -- it seems so long ago. I recall all too well the isolation, driving by McDonalds' Playland unable to explain to the crying, sobbing, incosolable three year old boy in the back seat why we can't stop, not even "for a little bit." I can still hear his voice in my head thinking about it! Today it seems like that was in another life -- Ben is doing very well, has hair, plays soccer, goes fishing, swimming, roasts marshmallows over the campfire, ... and everything else a normal four year old boy does. Amazing how different your lives will be in just a couple short months!
When you say "going through the motions" of life that is exactly what I remember. I was completely numb, trying to function as a care giver, husband, father, employee, ... it was overwhelming and very frightening. At this stage in the treatments Sarah's very close to feeling good, having ROUTINE monthly check-ups, and being a normal kid once again. My heart goes out to you, Jay, Sarah, and the rest of your family. Where you are now was the most difficult part of the treatment protocol for us.
My prayers are with you. I've posted a note on Ben's Caring Bridge (similar to your blog) requesting our friends to pray for Sarah Grace too.
Stay strong,
Todd
Bemidji MN
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