2 week home update and SPECIAL REQUEST
As we walk through week two at home we are thankful for some progress and improvement in some of the issues we were dealing with in week one. Week one was a bit wearisome and tedious as we made multiple trips to Children's in Pittsburgh for platelet transfusions, adjusted and changed medications and IV fluids, in an attempt to address some of the issues Kate was dealing with.
You may recall she was experiencing pain in her throat and mouth, and UTI (urinary track infection) like symptoms. Kate's Tuesday transfusion of platelets did not hold long as Thursday's home health labs showed the platelets had dropped to 20. By Friday morning when we got to the clinic for another transfusion they were 11. Friday both Kate's oncologist and the bone marrow transplant doctor were putting their heads together to determine the cause and treatment of these issues. Because cultures of both the throat and urine were negative, there was no bacterial cause for these symptoms. However, UTI symptoms had intensified and this was a concern to the doctors. On Tuesday there was a trace of RBC's in the urine, by Friday the RBC's were too numerous to count. With this extreme change the doctors are suspicious that we may be dealing with the BK virus. This virus irritates the lining of the bladder causing it to bleed. This in turn causes the platetelets to be used up quickly as they work to clot the bleeding of the bladder wall. A viral test was ordered and we are still waiting for a report. Of course with viruses we can only treat the symptoms. Thus, Kate is on 24 hour IV hydration to keep flushing out the bladder, platelet transfusions to keep the platelet count up and a new medication to relieve the discomfort. When we went on Sunday morning for another platelet transfusion, we were encouraged that they were 28 and seemed to be on their way up.
Despite the long, tedious week, Kate was able to host a surprise birthday party for her friend Ashley on Friday evening. Kate got this idea and orchestrated the plans for the party from the hospital. Kate could not have done this without the help of her friend Sam, who managed the logistics and necessary leg work that Kate couldn't do from the hospital. It was fun to have 20 noisy teenagers fill our home with laughter and fun. Kate was delighted with the results and Ashley was surprised:)
Tuesday, March 13th it was back to the clinic for another check up:
PRAISE: Counts were good and Kate did not need any transfusions!! Throat and mouth pain seem to be about gone.
We are thankful that Kate has had some improvement in the UTI-like symptoms. Labs revealed that there is still a large spill of RBC's in the urine, but at least this time it was in the countable range.
REQUEST: Please ask that Kate would soon be free of this virus and it's associated symptoms.
We were thrilled that this was a short clinic visit and Kate was up to a little shopping on the way home.
Fatigue is a huge part of this journey. Today Kate has slept most of the morning sleeping. This is to be expected and the extra rest is good for allowing her body to recover and gain strength.
REQUEST: Please ask that during the course of this week and next that Kate's energy level would increase significantly.
She leaves March 23rd for her weekend in NYC and we so much want for her to be able to enjoy the trip to its fullest.
Tomorrow, Thursday, home health will draw labs again. We are hoping that all of Kate's counts will be stable and we will not have to make another trip to Pittsburgh this week.
Monday, March 19th at 8:30 am is Kate's next scheduled appointment at the clinic. They called me this morning and have added on an audiogram following Kate's check up.
SPECIAL REQUEST: "Let us approach the throne of grace with confidence, so that we may receive mercy and find grace to help us in our time of need." Hebrews 4:16
PLEASE ASK FOR GOD'S HANDPRINT TO BE SEEN ON THE AUDIOGRAM. PLEASE ASK THAT THE AUDIOGRAM WILL REVEAL NO FURTHER LOSS OR MIRACULOUSLY THE HEARING LOSS WILL HAVE SHOWN IMPROVEMENT.
Yesterday was a sunny day in PA and temperatures soared to the 60's. It was good to get outside and let Grace take me for a walk:) and do a little yard work. Thank you for praying for my weary spirit. I have felt renewed and like some of the weight has been taken off my shoulders.
Please know that not a day goes by that we are not touched by the prayers you are lifting on our behalf.
Grateful for grace,
Elaine
You may recall she was experiencing pain in her throat and mouth, and UTI (urinary track infection) like symptoms. Kate's Tuesday transfusion of platelets did not hold long as Thursday's home health labs showed the platelets had dropped to 20. By Friday morning when we got to the clinic for another transfusion they were 11. Friday both Kate's oncologist and the bone marrow transplant doctor were putting their heads together to determine the cause and treatment of these issues. Because cultures of both the throat and urine were negative, there was no bacterial cause for these symptoms. However, UTI symptoms had intensified and this was a concern to the doctors. On Tuesday there was a trace of RBC's in the urine, by Friday the RBC's were too numerous to count. With this extreme change the doctors are suspicious that we may be dealing with the BK virus. This virus irritates the lining of the bladder causing it to bleed. This in turn causes the platetelets to be used up quickly as they work to clot the bleeding of the bladder wall. A viral test was ordered and we are still waiting for a report. Of course with viruses we can only treat the symptoms. Thus, Kate is on 24 hour IV hydration to keep flushing out the bladder, platelet transfusions to keep the platelet count up and a new medication to relieve the discomfort. When we went on Sunday morning for another platelet transfusion, we were encouraged that they were 28 and seemed to be on their way up.
Despite the long, tedious week, Kate was able to host a surprise birthday party for her friend Ashley on Friday evening. Kate got this idea and orchestrated the plans for the party from the hospital. Kate could not have done this without the help of her friend Sam, who managed the logistics and necessary leg work that Kate couldn't do from the hospital. It was fun to have 20 noisy teenagers fill our home with laughter and fun. Kate was delighted with the results and Ashley was surprised:)
Tuesday, March 13th it was back to the clinic for another check up:
PRAISE: Counts were good and Kate did not need any transfusions!! Throat and mouth pain seem to be about gone.
We are thankful that Kate has had some improvement in the UTI-like symptoms. Labs revealed that there is still a large spill of RBC's in the urine, but at least this time it was in the countable range.
REQUEST: Please ask that Kate would soon be free of this virus and it's associated symptoms.
We were thrilled that this was a short clinic visit and Kate was up to a little shopping on the way home.
Fatigue is a huge part of this journey. Today Kate has slept most of the morning sleeping. This is to be expected and the extra rest is good for allowing her body to recover and gain strength.
REQUEST: Please ask that during the course of this week and next that Kate's energy level would increase significantly.
She leaves March 23rd for her weekend in NYC and we so much want for her to be able to enjoy the trip to its fullest.
Tomorrow, Thursday, home health will draw labs again. We are hoping that all of Kate's counts will be stable and we will not have to make another trip to Pittsburgh this week.
Monday, March 19th at 8:30 am is Kate's next scheduled appointment at the clinic. They called me this morning and have added on an audiogram following Kate's check up.
SPECIAL REQUEST: "Let us approach the throne of grace with confidence, so that we may receive mercy and find grace to help us in our time of need." Hebrews 4:16
PLEASE ASK FOR GOD'S HANDPRINT TO BE SEEN ON THE AUDIOGRAM. PLEASE ASK THAT THE AUDIOGRAM WILL REVEAL NO FURTHER LOSS OR MIRACULOUSLY THE HEARING LOSS WILL HAVE SHOWN IMPROVEMENT.
Yesterday was a sunny day in PA and temperatures soared to the 60's. It was good to get outside and let Grace take me for a walk:) and do a little yard work. Thank you for praying for my weary spirit. I have felt renewed and like some of the weight has been taken off my shoulders.
Please know that not a day goes by that we are not touched by the prayers you are lifting on our behalf.
Grateful for grace,
Elaine
posted by Tracy @ 11:46 AM
3 Comments:
At 2:15 PM,
Anonymous said…
My dear friend and sister,
It is remarkable how you all continue to fight the good fight with such faith, stamina, gratitude, and gusto for life!! All of us out here continue to stand in awe! You are walking miracles and our heroes everyday.
We head to Texas tomorrow for my parents' 50th family reunion. Apparently the weather down there has been very rainy of late... bummer! Glad you have had some sun and warmer temps. It does the heart and mind (as well as the body) good to get out and breath the fresh air!!
YOU have a birthday coming up, my dear! I think that's on March 26th. (Now the whole world will know!)
You all are always on our minds, in our hearts, and in our prayers. WE LOVE YOU!
Your friend in OKC :)
At 3:08 PM,
Jan said…
We continue to hold you up in prayer. You three are such special women of God!
At 10:36 PM,
Anonymous said…
Still praying and thinking about you daily. Love to you all.
Aunt Diane, Uncle Steve and boys
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