Duffy’s blog entry
Where to begin on today….Such prayers answered and prayers to ask for…
The day started out somewhat chaotic. Kaylee is getting so many fluids that if I don’t wake up hourly to change her, she will soak thru her diaper, clothes and the bed! I guess my body really needed the sleep b/c I apparently hit snooze and slept right on thru until the nurse came in to check her vitals this morning. After waking up, I immediately needed to clean and change k, who was not pleased. She had a better breakfast than yesterday, but still nothing like they told me to expect with her on these steroids (which apparently is yet to come) They said to expect her mood changes… to cry one minute, laugh the next and be angry after and repeat, and THAT is happening…but the food part is slowly getting better. She had phases today on hating life, to barely napping, to crying hysterically if I wasn’t cuddling with her, to high fiving friends that came to visit, to laughing when we went to see a large choo choo train they have here. All over the map in emotions! Its ok…its part of this process!
The great news of the day~ The Chief of the Oncology dept. came to meet with me again today (k reallllllllly doesn’t like him) but he had some interesting news. “Her blood results are very good. It might scare you b/c her white blood count is so low to 0, and she is VERY susceptible to getting an infection at this point with no blood cells to fight anything off. I assure you, this is what we want. We want the chemo to get rid of those cells. Her platelet transfusion yesterday brought up her platelet count like we wanted and her reaction to the chemo is also something we are quite pleased with.” My response “You clearly were not here during World War III of trying to bathe her last night. ha ha” DR: “No, No, that is the steroids job and also very normal. She will be all over the place emotionally and Prednisone doesn’t hold a candle to what she is taking, so know that her fussiness and moaning, and crying are normal. With that said, we always feel like if a patient is responding in a positive way like Kaylee, we feel like with two strong parents, the child will do better at healing in their own environment that they are used to. Although she is at a MUCH higher risk or getting an infection…… (Wait for it…….) We are releasing Kaylee to go home TOMORROW!” (Holy Moly~ Praise God right?!!!) One would think I would be jumping up and down with excitement, right? What did I do? Tried not to cry while being filled with total & utter FEAR! My mind was all over the place with things like; but we aren’t ready, How will I know if she needs blood, or platelets? I have no idea what I’m doing, she could get so sick, and we will need a U-Haul to get all our stuff out, what do I do? Now, what I actually said was, “I’m sorry, what did you say!?” He laughed and explained that K’s chemo and surgical procedures will all be taking place on the same days, so we will need to be at the clinic (next door where they do outpatient chemo) every Monday, and to have a” go bag” in the car for every appt in case our appt turns into hospital stays. Chris and I have to attend 2 classes tomorrow before being released on ‘Parenting a child with Leukemia’, & handling meds, stats and when to call the Dr. The Dr. looked very pleased with his “good news” when leaving my room, and that is when I let the fear of being alone during the day with her..My child with Leukemia…without a nurse nearby to ask when I have a question, or concern for them to take a look at… consumed me, and I cried. Of course I cried lol. I was expecting to do what they told us; to live at the hospital until September 2nd. I wasn’t prepared for this. This is terrifying yet awesome news!
Although the idea is a HUGE praise God that she is responding well enough to go home, it is a HUGE prayer request that God keeps her healthy while she is at home since she is SO at risk for getting sick! We have a LOOOOONG way to go (We aren’t even ½ way thru phase 1 of “Induction” yet.)
We are totally relying on God to help us with fear and doubt that we will do the correct things. (Need to keep repeating to myself Isaiah 41:13! I mean, I learned how to crush pills tonight and fill a syringe for her twice a day steroids…I learned what to give her if she is vomiting, I learned how to stop a bloody nose, I learned what to pack in a “GO” bag (which is much like what I packed for delivering Kaylee!) There will be plenty that we will learn tomorrow too! This will be another chance to test our strength, her strength and what else God can do with the power of prayer that so many of you are doing!
So, tonight I challenge you to keep praying for her, and our family. We are thanking God for letting us attempt this at home where she feels more comfortable and free. This is still a battle we are intending on beating to the core!
THANK YOU THANK YOU THANK YOU for your prayers! Clearly, they are working! Let’s keep it up for TEAM KAYLEE!
************(we finally picked out THE verse we think is fitting for Kaylee’s battle. So this verse will actually be on the shirts we are working on getting made.
Jeremiah 29:11~ For I know the plans I have for you, says the Lord. They are plans for good and not for disaster, to give you a future and a hope.