Monthly Archives: August 2012

Here She is…

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Here’s the little sweet pea waiting for her turn in the MRI machine…

And here she is with her hard earned pizza and chicken after 18 hours without food! Oh, and her MRI was ALL CLEAR!!

We are packing it up and heading home tonight! Praising God for the good report today and cherishing being able to enjoy good news.

~Amey

MRI Day

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It’s been a busy couple of days. We ventured out of town this weekend to visit my parents in North Texas and at bedtime the first evening was when we realized we had left Phoebe’s water pump charger at home. It never fails, we end up out of town without an important medicine or in this case a battery charger that we desperately needed. We decided that we would try to make a go of it by just using the pump at night when she needs continuous water through her ng tube and we would manually push water into her tube through a syringe every fifteen minutes for her two day bolus’. Fun.

Everything was going according to plan until the 2nd night when I dropped Phoebe’s DDAVP vial on the kitchen floor when I was drawing up her bedtime dose. It smashed to pieces and I was fortunate to be able to get the last few drops out of the smashed bottle, enough for her bedtime shot dose. But DDAVP is what regulates her kidneys and urine output so she MUST have it every twelve hours. Which led to a midnight conversation with our endocrinologist in Dallas and a prescription fill at a 24 hour pharmacy 45 minutes away. Take note: if your child has cancer, living near a 24 hour pharmacy is a must. Nathan was going to leave early in the morning to fill the prescription before her next shot was due, but at 2 am her water pump battery began to beep letting us know it was dying. Phoebe can’t make it through the night without a water bolus, so we either had the option of setting our alarm for 15 minute intervals and pushing water through her tube for 6 hours straight or Nathan driving her the hour and  15 back to Dallas to plug her pump in.

So, At 2 am my husband; the best father in the world, loaded Phoebe up and drove 45 minutes to Denton to pick up her DDAVP med and then home to Dallas to hook her up to her water pump. At 7 am she spiked a fever and at 8am it hadn’t abated, so off to the ER he went with her. This man deserves a Gold Medal in being a servant hearted husband and father..Phoebe was given antibiotics as a precaution and then admitted when her sodium level came back high because they wanted to regulate her sodium for her MRI today. So, Nathan’s Dad came and got the boys and I in North Texas and I traded places with Nathan at the hospital.

Without making a long story even longer, I’ll just say that I spent my night arguing with the new resident doctor about water levels and trying to get Phoebe’s saline bolus switched from 1/2 normal to 1/4 normal and sneaking Sprite to her. At 6 am when all of their efforts failed and her sodium was going UP rather than down (which is the whole reason we were admitted in the first place) he finally let me run the show. I told him I wanted 70 mls in her ng tube water bolus and her IV saline reduced and I proceeded to give her water pushes through her syringe when no one was looking. This is such an uncomfortable  position to be in sometimes, but I have discovered that she suffers when I don’t advocate for her. Who knew we would have to be so “on our toes” in Phoebe’s care  regarding even the medical side of things? I find that most doctors will say “You obviously know your child better than we do, BUT we want to do x,y,z and see if that works” and when I already know AND TELL them that we have tried x,y and z before and it doesn’t work and they don’t listen, what do I do then? Grrrrrrrrrrr.

So, at long last, her sodium is on the down swing thanks to the help of a nurse that knows me and Phoebe well. She told the resident to hand over the reigns 🙂 Lol. I am not trying to sound prideful, but it really IS true…when it comes to managing Phoebe’s Diabetes Insipidus, we do a better job than the residents on the floor. End of rant.

Right now Phoebe is in the playroom painting with her friends who have Leukemia. I have missed being around the other cancer parents here. There is an instant, overwhelming connection with a parent who has a little one with cancer. The woman I met today has been walking through chemotherapy with her 3 year old daughter since 2010. Incredible. The other sweet family we always encounter in the halls has a 1 year old with 2 separate types of Leukemia. She is now on experimental drugs. My heart aches and swells in this place. I want to wrap those parents in a big hug and cry with them, but I rememeber my reaction when others have done the same to me. At times, the veil is so thin between maintaining composure and completely going over the edge and pity from others can shatter you into a thousand tiny little fragments. So, I maintain my composure with them so that they may maintain theirs. We both understand.

It is noon now, and soon Phoebe will be be taken down  and prepped for her MRI. She will be intubated and sedated and it will take 2 hours to complete the procedure. She will also receive her intrathecal (spinal) chemotherapy injection for this next round. We will have results shortly after the MRI. Please pray that she does well with the entire procedure and of course for No Evidence of Disease.  MRI days hold a lot of anxiety and also a lot of joy when the results are clear. But we also understand the gravity of these test results should they be bad. Thank you all for standing with us.

~Amey

And other days, Joy is palpable…

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Phoebe is doing great. She has handled this last round of chemo very well so far and her counts were still up at her clinic visit this morning.

One of the most exciting things going on with this sweet girl right now, is that she is fast on her way to WALKING again! Phoebe LOVES her physical therapist and has been so motivated to get back on her feet. Today she took four steps from her stool to the couch bearing her own weight which is just incredible for her, and was absolutely stunning to witness. When she finally receives her orthotics I think she will be walking in no time. She has had some trouble bending her knees in order to sit back down because her muscles are so tight from lack of use. Please pray for that as she moves forward and works hard to get back on her feet.

Here she is with her big brothers helping her during a recent session:

Nathan’s Dad has been with us for the past couple of weeks and he has been a huge help. Phoebe and her Grandad go for long drives when she is feeling emotional and that usually calms her down. He has also done his time at the roller rink with the boys, taken them to the movies and played more than his fair share of board games. This Texas summer heat is obnoxious and I am thankful to have the extra help to keep the boys from bouncing off the walls. I think we will all be glad to get back to the country one of these days so that the boys will have some useful work to put their hands to on the farm. Last year their lives were full of farm chores; collecting eggs, milking goats and cleaning the goat dairy, taking care of pigs, slaughtering chickens and turkeys, harvesting vegetables and working the farm stand drop-off sight. They are ready to get to back to work and I think we are too.

I always joke that Nathan is a frustrated farmer. He lives, eats and breathes aquaponics, ie: the simultaneous raising of fish and vegetables in a  closed system. He has a small system set up in our back yard and we are enjoying the tomatoes, peppers and cucumbers it has produced lately, but he is so ready to expand and set up a large scale system. We are itching for dirt of our own, soil to amend and prep, a garden…chickens and fresh eggs etc. We are praying about our next step and if and when God would have us move while Phoebe is in treatment. Mostly, we are realizing that this could be a very long road, and that we need roots and our kids needs roots and community and support beyond what is possible here in Dallas. Plese pray for us, that God would give us discernment. It’s always said that one should never make big decisions in the midst of crisis, but that is a luxury we do not have.

On August 13th Phoebe will have her next MRI and she will also receive her spinal chemotherapy. Three days later she will turn 3! On August 21st she will go in-patient and begin this next round of chemotherapy. She will be receiving some of the harsher medicines this round so please pray for her.

I am feeling better today than when I last poured out my heart on here. Of course that all changes depending on the day. Such is life going through cancer treatment. I am cherishing Phoebe’s good days and trying to live in the moment. I am leraning that living completely in the moment is a discipline that must be learned. I have to be very purposeful to bring my thoughts captive or else I can be carried away on a wave of grief at any moment. I can get way ahead of God and imagine a future without the grace to bear it all. I have to “cast down foolish imaginations” and be fully present. This is hard work. Some days I fail miserably and am easily overwhelmed. Other days, joy is palpable.

Thank you all for your words of encouragement, words of permission, prayers, love…