Request: Relief of nausea and fatique

Despite the tweaking of medicines Kate's nausea and fatigue still seem to have the upper hand. We are asking for you to please make these two needs a focus of your prayers for Kate.
NAUSEA: Last Thursday we traveled to Children's for an infusion of a new antibiotic for Kate. Prior to leaving the house Kate took the best of her anti-nausea medications in an attempt to subdue her nausea. When we arrived at the clinic, the nausea had not improved, so she asked for an IV dose of another anti-nausea drug that can be given over top of the initial medication. The nurse told her that it was already ordered, in that the IV antibiotic that she was about to get, may cause nausea and they wanted to pre-medicate her before administering it. Sad to say despite that pre-medication, Kate heaved through out the hour long infusion of the antibiotic. In addition she also felt very weak and her counts showed that her hemoglobin had dropped a bit. Her heart rate was a bit tacky, reflective of the fact that her heart was having to work harder to pump the blood with her low RBC count. With these factors in mind she received some IV fluids and then two units of blood. It was another long day at the clinic. She was truly wiped out and had to take the day off from school on Friday to rest. She slept most of the day. I am giving Kate her anti nausea meds very early in the morning, before she ever gets up in hopes to halt the morning heaves and prevent throwing up. So far, not a great improvement.
FATIGUE: Last Thursday we increased the dose of Kate's medication which helps push her past the fatigue. She has not noticed much difference. Getting through a day of school takes about all the energy she has for the day. She is going to school an hour late each day, as she has a study hall first period, and that allows an extra hour of sleep. On the weekend Kate must often choose between activities, as she knows she just simply does not have the energy to do everything.
PRAISE: Kate's attitude and spirit continue to be positive and sweet. God has truly filled her with his grace to endure this "thorn in her flesh" of nausea and fatigue.
REQUEST: Nausea has always been the point of struggle for Kate. The nausea lingered for a long time post treatment in 2004-2005. Gradually over time, it improved. We may just have to wait it out again this time. We continue to be thankful for the clean MRI, knowing that there is no tumor related cause for her nausea. We continue to work with medication in an attempt to bring improvement. Would you please ask that God will bring healing in the areas of nausea and fatigue. Please ask for continued perseverance, grace and encouragement for Kate as she walks this bumpy road.

Only by grace,
Elaine

Amazing Grace..... another Miracle !

The Lord has done great things for us, and we are filled with joy! Psalm 162:3 Another incredible day in the journey...one that went from wrestling with fear and clinging to our hope in God to the overwhelming joy of celebrating the miracle of a clean MRI. It was an incredibly long day of waiting ... the 10:00 MRI finally happened around 11:00. We finished that about 1:30 and then headed to the clinic where with traffic and the inevitable hospital time pushed that appointment to 3:00. On the way to the clinic Kate shared that she had a perfect peace while in the MRI tube - a definite answer to a specific request. We did blood work and check up with the nurse practitioner while waiting for the doctor. Finally, our long day of waiting came to an end around 4:00 when Kate's oncologist came into the room and shared the words we had all been praying for... "the scan is clear, it looks great!" Words simply cannot express the magnitude of joy and relief that filled our hearts. "God has surely listened and heard our voices in prayer. Praise be to God, who has not rejected our prayers or withheld his love from us!" Psalm 66:19&20

We spent the next hour discussing the headaches, nausea and extreme fatigue that Kate is experiencing. Kate's oncologist shared that by the appearance of Kate's bone marrow in her spine visible on the MRI, that it was very evident that it has been hit hard and depleted by all the treatment she has been through. It will take quite a while for her bone marrow to recover. Because of the depleted bone marrow, her blood counts continue to hover at lower levels which of course directly impact how she is feeling. It will still be some time before she is feeling truly well. Kate's doctor feels the low sodium is a response of the brain to the influences of the radiation. We will continue to monitor Kate's sodium levels and she will remain on her salt tablets until this stabilizes. We were all relieved and thankful that there was no tumor related cause for Kate's headaches. It seems that they must be muscular/skeletal in nature. We will combine medical massage and chiropractic medicine to address this issue. We have made some adjustments to Kate's meds in hopes that will help Kate's nausea. Dr. Jakacki also talked with us about the impact of Kate's radiation and high dose chemotherapy on Kate's cognitive and processing skills. The challenges that Kate is experiencing in these areas are very understandable given all that her body and brain have been through. Right now Kate is definitely battling the acute side effects of her treatment - harsh to her body and brain. Please pray with us that this will improve with time as her body and brain heal and that the long term impact on her cognitive abilities will be minimal. Dr. Jakacki indicated that some modifications are necessary in order to accommodate these changes in processing skills. She insisted that Kate can have no time restraints on her tests. She also highly encouraged us to delay Kate taking any sort of placement or proficiency tests during this time that she is recovering. She said she will only experience frustration and become discouraged when she can't perform academically like before. She strongly discouraged Kate taking the SAT's in October and encouraged us to wait several months at least until Kate begins truly feeling better and stronger. We will continue using medication to increase Kate's energy, but have also with the help of the high school's very understanding administration made some adjustments in Kate's daily class schedule to allow some extra rest and reduce the wear and tear of hikes from one end of the building to the other. How grateful we are for the support and encouragement Kate has received from her teachers and the administration.

After receiving the ultimate gift of God's grace and mercy with the clean MRI scan, our hearts were so full we didn't think life could be any better. But God had another very unexpected gift in store for Kate. Kate came home from school on Friday afternoon with the special news that she had been selected for home coming court.
She was so surprised and touched that her friends and classmates would honor her in this way. She has said over and over this weekend what an encouragement this has been to her heart. Thank you God for still another unexpected blessing!

Personal reflections....
As I sat beside Kate during the long MRI, I read the Psalms in an attempt to keep my mind focused as I wavered back and forth between fear and peace. In so many of the Psalms David cried out in fear or distress to God. Time and time again, God's hand was at work in David's life and David's cry for God's help would soon be followed by songs of praise. We too have time and time again felt the hand of God at work in our lives, and in Kate's journey with cancer. We too can proclaim with David the words of Psalm 77:14 "You are the God who performs miracles; you display your power among the peoples."

In the two days leading up to Kate's MRI, as I prayed and prayed, the doubts and fears would attempt to take hold of my heart. In our human weakness our faith often falters and fails. I found myself praying the words of Mark 9:24..."Lord, I believe, help me in my unbelief." I was encouraged the day after Kate's MRI to read in a book that I'm reading...that God hears these words as a cry for more faith - a plea to conquer all unbelief, all lack of trust. That cry heard. That prayer answered. More faith, and at the same time more power to see where trust is lacking.

God heard our voices and our cry for mercy. We can say... "Be at rest once more, O my soul, for the Lord has been good to you." Psalm 116:7 How can we ever thank you for standing beside us in prayer and rejoicing and celebrating with us God's faithfulness?!

Amazed by grace,
Elaine

MRI

Kate's MRI is CLEAR, we are celebrating!!!!! Update will follow soon! Thank you all for your prayers.

Special Request: Thursday Sept.13th-MRI

In light of the fact that Kate is struggling with nausea again and she has been experiencing headaches on and off over the last week, her oncologist's office called today and has scheduled an appointment for this Thursday, September 13th. She will have an MRI scan at 10:00 am followed by an appointment around 2:00 pm with her oncologist at the clinic to determine what might be causing these headaches and the return of the nausea. The scan will include the brain, brain with contrast and spine with contrast. As you can imagine, MRI's are always a source of anxiety. We are trusting, believing and praying that God's hand print will be upon this MRI and there will be no tumor related causes for Kate's nausea and headaches. I must be honest the spirit of fear has clutched at my heart this afternoon and I am doing my best to walk by faith and put my trust in God who created Kate and knows our every need. Kate came home from school and also said she feels scared, but confidently added that she knows God's hand print will be on the scan either way. Please ask for God's mercy and an amazing grace gift with a clear scan. Please pray with us that the scan time will pass quickly and that God's peace will create in Kate's heart and mind a calmness as she endures the lengthy time on the scan table and that we will both be able to rest in Him. Thank you for lifting this need, Kate, Maggie and me in prayer.

Challenges and Requests

The start of the school year has been a cause for celebrating the miracle that Kate is back in school. Being back in school, however, has opened our eyes to a new challenge. We have seen a difference in Kate's ability to recall information. On two separate occasions Kate has expressed a frustration that she felt like she could not think clearly or focus on her tests or recall information she had studied and knew well. I observed this first hand, when reviewing with her for a test. After the first incident, we happened to be by chance having labs done that afternoon and found that her hemoglobin had dropped, as well as, her sodium level (her sodium was 127 normal is 135). The nurse practitioner said the low counts may well have contributed to this feeling of not being able to think. Interestingly, I talked with a friend and she shared that her mother's sodium had dropped to 120 and when taken to the ER the doctors thought this woman was having a stroke based on the state of confusion she was in. We are currently limiting Kate's consumption of water, so as to not dilute her sodium. Last week, I read the labels on everything at Wal-Mart trying to find a variety of drinks and foods high in sodium. Meanwhile the majority of health concerned folks are looking for foods and drinks low in sodium:) Gatorade is one of the highest sources, but Kate says you can only drink so much Gatorade:) In addition to the recall issue, over the past six months it has been necessary for Kate to take some proficiency and placement tests. We recently learned that she did not do well on these. This is not typical of Kate's normal academic performance. For a girl who has always taken advanced and college prep courses, observing this difference in her normally high academic performance we are wondering what is going on. Given all that Kate has been through physically with treatment it is understandable that she may not have been able to perform to her usual potential on a given day. I talked with the radiation oncologist and it is his hope and feeling that she is still experiencing some acute side effects from the June radiation. He stated that she has been through alot with the high dose chemo and then radiation again. He's hoping that we will see an improvement with time. We are praying to that end. He had told us back in 2004 before Kate's first radiation that some patients may experience a change in cognitive and processing abilities, usually seen about a year after treatment. His feeling is that we would have seen change from the 2004 treatment before now and it would have been a gradual change, not a sudden change. He also does not feel like such side effects from this June's radiation would have already shown themselves already.

Kate has not felt great for about a week now. Fatigue, nausea, lack of appetite, headaches, make her days more challenging. She desires to be in school and has not opted to stay at home. She got out on the weekend to do things with friends, but her strength and energy limit the amount of time she can spend at any event. She reads her body well and knows she can only do so much.

Although she is feeling very tired, her hemoglobin level was reasonable in yesterday's (Sept. 10th) counts. Sodium, however, had dipped again to 127.

Thus our requests are on going:

~that Kate's sodium level would stabilize
~for wisdom for her medical team addressing the sodium issue
~that these issues will indeed be of an acute nature and short lasting and that we will see an improvement in Kate's ability to think clearly and the ability to recall with the ease she has been used to
~ongoing prayer for the ability to think clearly and recall what she has studied
~that God will protect Kate's brain from long term, long lasting effects of radiation
~Kate's nausea has returned. Last week and again this week she has had nausea daily, with no relief even with the increased dose of her steroid.
~I don't think you and I can fathom how exhausting a day of school in the heat and humidity, with the added stress of nausea and fatigue must be for Kate's weakened body. She falls into bed at 9:00 or 9:30pm. Friday night she went to bed at 7:00 pm. Please ask that her energy and strength would be renewed daily.
~Kate will take her first set of SAT's on Saturday, October 6th. Given Kate's struggles in thinking these last two weeks, we have enlisted two teachers to tutor her and help her review and get her mind thinking in the mode of such standardized tests. Hopefully this will help her recall and also build confidence.

Thank you for your on going prayers for God's touch on Kate's health. The wonderful thing in the midst of the academic challenges of the last two weeks was hearing Kate pray and seeing how heavily she leaned on God and how confidently she sought his help. How we rejoiced together and thanked God when she received great scores on her two tests last week.

Leaning on his arms of grace,
Elaine

Labor Day Getaway

"Nature is often God's nurse for tired souls and weary bodies." How refreshing it was to our bodies, minds and spirits to enjoy a day away at Deep Creek, Maryland with our friends the Meyers. It was a beautiful, picture perfect day with the sun sparkling on the lake and blue skies. We all had a great time on the water riding the jet skis, the paddle boat and "tubing" on the 'torpedo' behind the power boat. I'm not sure what Maggie found to be more fun, bouncing over the waves on the torpedo or falling off into the lake when the bounce was too high and they couldn't hang on!!:)

First Day of School 2007

First Day of School 2007

We have been doing well...busy days in preparation for school and trying to capture the last free moments of summer before routine and schedule confines us again:) The week before school started ten of Kate's friends and their moms plus Maggie and her friend Jordan were here for an evening of fun to celebrate the beginning of the girls' senior year. We had lots of delicious Mexican food and desserts.

The girls started school on Wednesday. It's fun that the first day of school still generates excitement even as they have grown older. Of course in keeping with tradition, Mom had to take the first day of school photo:) They were eager to be back with their friends and activity filled schedules. Kate has put in two full days of school. We are thankful that she has had the strength and stamina for a full day of school. Given where we were at this time last year with the reoccurrence of Kate's cancer, we consider it nothing short of a miracle that she was able to begin her senior year with her class. Her body is of course still in major recovery mode, and her fatigue level has been heightened by low counts, plus the heat and humidity which is physically draining. Maggie is an eighth grader this year and enthusiastic about everything in life. She had her first basketball game of the season and scored 3 points!! She's looking forward to ballet starting again next week. I will be substitute teaching this fall. That seems to be the best plan right now, not knowing from one day to the next what Kate's needs may be. Subbing gives me the flexibility of being able to say no to a day of teaching if I have to, and the school is very gracious in understanding those needs and working with my schedule.

Kate's blood work last Friday was ok. Her platelets held steady at 50. Her hemoglobin dropped a little low for Kate. She was not however symptomatic and we repeated labs last Monday and while hemoglobin only rose a tenth of a point, she remained asymptomatic. Her sodium remains a concern. We stopped IV sodium a week ago Monday as she was at 134 and normal is 135. She continued her twice a day salt tablets, but we were disappointed last Friday to see that sodium fell to 129. So we upped the salt tablets to 3x per day and had to repeat labs on Monday again. We were encouraged this Monday's sodium climbed back to 134. However, yesterday, while platelets hung in there in the mid 50's, Kate's sodium yo-yoed once again and fell to 127 and her hemoglobin dropped as well. Thus, we will make a trip to Children's today (Friday, August 31st) for a transfusion of RBC's. We have been playing with her sodium levels all summer. The nurse practitioner said at some point if we can't get this stabilized it might necessitate some renal function tests. Please ask that her kidneys not be an issue. We're doing all the human medical things to regulate the sodium and are not able to maintain results. Please pray that God intervene with the sodium and bring it into stable levels in Kate's body.

Please know of our gratitude for your ongoing interest in our lives and continued prayers as we journey around the curves on this journey. Life is a precious gift. Embrace each new day and be blessed!!

Only by grace,
Elaine