Just a little update on Colin. We took him to the pediatrician to follow up from our ER visit and the pediatrician ordered more blood tests to determine what might be causing petechiae. It took 3 different visits and 8 pokes before the tests finally worked. His blood kept clotting before they could get it in the test tube (which is kind of ironic because that is essentially what is wrong with him). Finally, on Friday the test came back that his platelets (the clotting cells in your blood) are not functioning correctly. Therefore, we have been referred to a hematologist for more testing to determine what exactly is wrong and how we will treat it.
It was a difficult 3 days of testing to get to where we are, and we will be doing more of it. Please pray for Colin (and us) as we go through these tests and pray that it is something easily treatable.
We hope you all had a Merry Christmas and have a Happy New Year!
Tuesday, December 27, 2011
Monday, December 12, 2011
Deja Vu
It has been awhile since my last post and I apologize for that. We have been in transition this past month and we are still trying to find our way. Andy started his new job in northeast Ohio at the beginning of November and we followed him up. My very generous maternal grandparents have opened up their home to us while they are living in Florida for the winter, so we are splitting our time between there and our house.
Last night, we experienced a moment in our lives that we hoped to never have to repeat. For the last two months, Colin has had petechiae-like spots on the trunk of his body (petechiae are broken capillaries under the skin that look like mild pin pricks or purple or red spots. They are commonly caused by a low platelet count, something that is often associated with leukemia). We showed them to his pediatrician at his 12 month visit and she offered to do a CBC. We didn't think it was a big problem at that point in time, so we declined.
During the past week, we had noticed an increased amount of spotting on his trunk. I think any other parent might have taken it for a rash, but given our history, we recognized it as something possibly more concerning. Andy had a peace about the situation, however, I could not get over the possibility that we might be going down the same road that we had taken with Maggie 3 1/2 years ago. Andy insisted that we get the spots looked at in Akron at the Children's Hospital--to ease our minds and hopefully rule out leukemia.
So, last night we took Colin to the ER to get him checked out. The hospital nurses and doctors confirmed our suspicions; the spots were petechiae and we were immediately rushed to a room to be examined. The doctors wanted to do blood work to determine the cause. All of a sudden, leukemia was back on the table as a possibility for our "healthy" child. A whole rush of feelings came back to us as they prepped him for an IV and struggled to find a vein as he fought (just like Maggie). After about 30 minutes, they were able to get their blood samples and we were told to wait an hour for the results. During that hour, we tried to comfort Colin who was upset by the situation and we prayed desperately that our fears would be taken away.
Ultimately, the doctor came in saying "Do you want to hear the good news or the good news?" Can I just say that a wave of relief washed over me with that question. Colin's blood counts all looked great. His white count was normal, which we were very relieved to hear. His platelets were normal, so now we may have to explore further why he is getting petechiae. But, it is not leukemia. We later heard from our nurse that after they had drawn Colin's blood (and before the results were in) they were all praying for us. They were concerned about Colin's presentation, as well as sympathetic to our history and emotions.
It's difficult being a parent of a child who had cancer. We are forever traumatized by Maggie's initial diagnosis, treatment, and recovery from complications of her treatment. I have found it very difficult to forget and the past week (and especially yesterday) we relived many of those emotions that we hoped to never have again. I find it to be a curse to live with these memories and emotions. When talking with our oncology nurse about Colin this week, she told me that for Colin to have leukemia would mean we have really bad luck. I started to question that luck as we waited in the hospital last night. I began to picture all that we had done with Maggie during her treatment and thought there is no way we could do this ever again. I was so scared, and maybe more so because we're not naive to how hard it is.
With the good news from the doctor, came such relief and joy. Our joy is back. Our happiness knowing we have two healthy children is here and I pray that we never have to experience the questioning of that health ever again. We can celebrate Christmas knowing that God has shown us His faithfulness, once again. And we hope that you, too, have a healthy and blessed Christmas season.
Last night, we experienced a moment in our lives that we hoped to never have to repeat. For the last two months, Colin has had petechiae-like spots on the trunk of his body (petechiae are broken capillaries under the skin that look like mild pin pricks or purple or red spots. They are commonly caused by a low platelet count, something that is often associated with leukemia). We showed them to his pediatrician at his 12 month visit and she offered to do a CBC. We didn't think it was a big problem at that point in time, so we declined.
During the past week, we had noticed an increased amount of spotting on his trunk. I think any other parent might have taken it for a rash, but given our history, we recognized it as something possibly more concerning. Andy had a peace about the situation, however, I could not get over the possibility that we might be going down the same road that we had taken with Maggie 3 1/2 years ago. Andy insisted that we get the spots looked at in Akron at the Children's Hospital--to ease our minds and hopefully rule out leukemia.
So, last night we took Colin to the ER to get him checked out. The hospital nurses and doctors confirmed our suspicions; the spots were petechiae and we were immediately rushed to a room to be examined. The doctors wanted to do blood work to determine the cause. All of a sudden, leukemia was back on the table as a possibility for our "healthy" child. A whole rush of feelings came back to us as they prepped him for an IV and struggled to find a vein as he fought (just like Maggie). After about 30 minutes, they were able to get their blood samples and we were told to wait an hour for the results. During that hour, we tried to comfort Colin who was upset by the situation and we prayed desperately that our fears would be taken away.
Ultimately, the doctor came in saying "Do you want to hear the good news or the good news?" Can I just say that a wave of relief washed over me with that question. Colin's blood counts all looked great. His white count was normal, which we were very relieved to hear. His platelets were normal, so now we may have to explore further why he is getting petechiae. But, it is not leukemia. We later heard from our nurse that after they had drawn Colin's blood (and before the results were in) they were all praying for us. They were concerned about Colin's presentation, as well as sympathetic to our history and emotions.
It's difficult being a parent of a child who had cancer. We are forever traumatized by Maggie's initial diagnosis, treatment, and recovery from complications of her treatment. I have found it very difficult to forget and the past week (and especially yesterday) we relived many of those emotions that we hoped to never have again. I find it to be a curse to live with these memories and emotions. When talking with our oncology nurse about Colin this week, she told me that for Colin to have leukemia would mean we have really bad luck. I started to question that luck as we waited in the hospital last night. I began to picture all that we had done with Maggie during her treatment and thought there is no way we could do this ever again. I was so scared, and maybe more so because we're not naive to how hard it is.
With the good news from the doctor, came such relief and joy. Our joy is back. Our happiness knowing we have two healthy children is here and I pray that we never have to experience the questioning of that health ever again. We can celebrate Christmas knowing that God has shown us His faithfulness, once again. And we hope that you, too, have a healthy and blessed Christmas season.
Monday, October 24, 2011
A Big Month
A lot has happened in our household in the past month. We have had much to celebrate, but also some sadness as well. My Grandpa Lehman passed away a month ago today. He was a wonderful man. He is dearly missed, but I also know he is now with my Grandma, and I know they are enjoying life up in heaven. We had his memorial service and burial 6 months to the day after my Grandma passed away. They were a great model of a beautiful marriage.
We have also had much to celebrate. October is the month of birthdays for our house. Maggie celebrated her 4th birthday on October 8 and Colin turned 1 on October 14. We celebrated the whole week with parties with family. Andy and I reflected on how we weren't sure we would ever be able to celebrate Maggie's 1st birthday and here we are at number 4! And how much more fun it gets every year.
And finally, Andy is finished! On Colin's birthday, he took his final licensure exam and passed. He is now a licensed psychologist. No more studying ever again! I am very proud of him. Originally I thought we'd be down in Dayton for 5 years, however, I learned 3+ years ago that there is no such thing as a plan. Andy took a year off from his school to take care of Maggie while I worked. He spent a year commuting to Cincinnati for his internship (and dealing with Maggie in ICU for 6 weeks), and then took a post-doc at Wright State University. He has worked hard in very difficult circumstances throughout his degree and early profession (7 years!) and for that he deserves the best.
So what is next? Andy has taken a job in Medina with a Psychology consulting firm that works with senior citizens in nursing homes. He will be starting as soon as the paperwork for insurances and medicare goes through (in about 1-3 weeks). We continue to wait for our house to sell and once it does, we will be buying in the Medina/Wadsworth area. We haven't quite figured out what our family will do in the interim, but as I learned before, making a plan and actually having it follow through are two different things. Until he does start work, we will enjoy the sights of Dayton, as this chapter of our lives will soon be closed.
We have a lot of unknowns, but I think that has been our life story these last 3+ years. The day that we can feel settled knowing where we will live, that our children are healthy, a paycheck is coming in, and life is peaceful will be a great day. I look forward to it.
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| This photo was taken May 22, on his 89th birthday. |
We have also had much to celebrate. October is the month of birthdays for our house. Maggie celebrated her 4th birthday on October 8 and Colin turned 1 on October 14. We celebrated the whole week with parties with family. Andy and I reflected on how we weren't sure we would ever be able to celebrate Maggie's 1st birthday and here we are at number 4! And how much more fun it gets every year.
And finally, Andy is finished! On Colin's birthday, he took his final licensure exam and passed. He is now a licensed psychologist. No more studying ever again! I am very proud of him. Originally I thought we'd be down in Dayton for 5 years, however, I learned 3+ years ago that there is no such thing as a plan. Andy took a year off from his school to take care of Maggie while I worked. He spent a year commuting to Cincinnati for his internship (and dealing with Maggie in ICU for 6 weeks), and then took a post-doc at Wright State University. He has worked hard in very difficult circumstances throughout his degree and early profession (7 years!) and for that he deserves the best.
So what is next? Andy has taken a job in Medina with a Psychology consulting firm that works with senior citizens in nursing homes. He will be starting as soon as the paperwork for insurances and medicare goes through (in about 1-3 weeks). We continue to wait for our house to sell and once it does, we will be buying in the Medina/Wadsworth area. We haven't quite figured out what our family will do in the interim, but as I learned before, making a plan and actually having it follow through are two different things. Until he does start work, we will enjoy the sights of Dayton, as this chapter of our lives will soon be closed.
We have a lot of unknowns, but I think that has been our life story these last 3+ years. The day that we can feel settled knowing where we will live, that our children are healthy, a paycheck is coming in, and life is peaceful will be a great day. I look forward to it.
Friday, September 23, 2011
Hallelujah
One of Maggie's favorite songs right now is, "Hallelujah" by Leonard Cohen (click here to listen). When asked who wrote it, she said, "I know who wrote it, Shrek." It's a quite popular song that is on many different movies, tv shows, etc. This song's title says it all for us. Hallelujah, Maggie is great!
Throughout the last two weeks we have had a range of emotions. At times we have felt peace, and other times extremely terrified. We found a red spot on Maggie's head on Sunday and the both of us about lost our supper. With having mysterious counts a week prior and then adding to our previous experience of spots, we were worried that Maggie had definitely relapsed. By the next morning, that red spot became a bruise. Whew, relief...
We have tried to make sense of her counts, trying to make ourselves feel better. Of course it was a viral response, we would say to each other. Just think about what is going through our house and some of the different symptoms she was portraying. After that we would feel better and then in would creep doubt once again. Visualizing how our life would change if Maggie did indeed relapse was terrifying as well.
There were some moments of God during the last two weeks to help us through this as well. As I sat nursing Colin, I remembered two songs that we had in our wedding. One of them was "Deep Peace/A Gaelic Blessing" by John Rutter. The other was "Trust" by Sixpence None the Richer. Below are the words and links to hear the songs. It seems a bit odd for two people to choose these songs for their wedding, since they are not traditional wedding songs. As I reflected in the last couple weeks, I think God was telling us something about our life before we even knew what we would eventually be enduring. It brought comfort to know that God was speaking to us almost 10 years ago at the start of our life together. We have also experienced other songs this week with the word "trust" in them. God was talking to us and though it was harder than ever to trust, given this situation we were in (again), we could see these moments.
The counts we received today are better than they have ever been. Maggie's ANC (ability to fight infection) was 4300 (normal is above 1200). Two weeks ago it was 940. We have not seen Maggie's ANC this high since she was off treatment. Andy told me today afterwards that he had prayed last night that God would give us counts that we would not have to question, and having a very high ANC and low percentage of lymphocytes, was quite a definitive answer.
We feel a great sense of relief and exhilaration. When we got in the car to leave, we played one of the songs that got us through the week, "He Never Failed me Yet," by Robert Ray (see below). A great culmination to a hard two weeks.
We want to thank you all for your continued prayers, especially the last two weeks and today. They are what continue to get us through these difficult times.
And if I might ask for another prayer request for my family- My Grandpa Lehman has been in ICU for almost a week with encephalitis. Please pray God's healing and peace for my Grandpa. Please also pray for my family as we are going through another difficult experience after losing my Grandma not quite 6 months ago.
Deep peace of the running wave to you
Trust in the Lord with all your heart
Throughout the last two weeks we have had a range of emotions. At times we have felt peace, and other times extremely terrified. We found a red spot on Maggie's head on Sunday and the both of us about lost our supper. With having mysterious counts a week prior and then adding to our previous experience of spots, we were worried that Maggie had definitely relapsed. By the next morning, that red spot became a bruise. Whew, relief...
We have tried to make sense of her counts, trying to make ourselves feel better. Of course it was a viral response, we would say to each other. Just think about what is going through our house and some of the different symptoms she was portraying. After that we would feel better and then in would creep doubt once again. Visualizing how our life would change if Maggie did indeed relapse was terrifying as well.
There were some moments of God during the last two weeks to help us through this as well. As I sat nursing Colin, I remembered two songs that we had in our wedding. One of them was "Deep Peace/A Gaelic Blessing" by John Rutter. The other was "Trust" by Sixpence None the Richer. Below are the words and links to hear the songs. It seems a bit odd for two people to choose these songs for their wedding, since they are not traditional wedding songs. As I reflected in the last couple weeks, I think God was telling us something about our life before we even knew what we would eventually be enduring. It brought comfort to know that God was speaking to us almost 10 years ago at the start of our life together. We have also experienced other songs this week with the word "trust" in them. God was talking to us and though it was harder than ever to trust, given this situation we were in (again), we could see these moments.
The counts we received today are better than they have ever been. Maggie's ANC (ability to fight infection) was 4300 (normal is above 1200). Two weeks ago it was 940. We have not seen Maggie's ANC this high since she was off treatment. Andy told me today afterwards that he had prayed last night that God would give us counts that we would not have to question, and having a very high ANC and low percentage of lymphocytes, was quite a definitive answer.
We feel a great sense of relief and exhilaration. When we got in the car to leave, we played one of the songs that got us through the week, "He Never Failed me Yet," by Robert Ray (see below). A great culmination to a hard two weeks.
We want to thank you all for your continued prayers, especially the last two weeks and today. They are what continue to get us through these difficult times.
And if I might ask for another prayer request for my family- My Grandpa Lehman has been in ICU for almost a week with encephalitis. Please pray God's healing and peace for my Grandpa. Please also pray for my family as we are going through another difficult experience after losing my Grandma not quite 6 months ago.
Deep Peace (A Gaelic Blessing)
Deep peace of the flowing air to you
Deep peace of the quiet earth to you
Deep peace of the shining stars to you
Deep peace of the gentle night to you
Moon and stars pour their healing light on you
Deep peace of Christ, of Christ
The light of the world to you
Deep peace of Christ to you
Trust in the Lord with all your heart
Lean not on your own understanding
In all of your ways acknowledge Him
And He will make your path straight
Don't worry about tomorrow
He's got it under control
Just trust in the Lord with all of your heart
And He will carry you through
Lord, sometimes it gets so tough
To keep my eyes on You
When things are going rough
When things are going rough
But when I turn my eyes up to the sky
And I hear Your voice it says to me
So child do not be weary with the troubles
Of this world I have overcome
Trust in the Lord with all your heart
Lean not on your own understanding
In all of your ways acknowledge Him
And He will make your path straight
Don't worry about tomorrow
He's got it under control
Just trust in the Lord with all of your heart
And He will carry you through
He will carry you through
He Never Failed Me Yet
Trust and never doubt
Jesus will surely bring you out
He never failed me yet
I will sing of God's mercy
Every day every hour
He gives me power
I will sing And give thanks to Thee
For all the dangers, toils and snares
That He has brought me out
He is my God And I'll serve Him
No matter what the test
Trust and never doubt
Jesus will surely bring you out
He never failed me yet
I know God is able
To deliver in time of storm
I know that He'll keep you
Safe from all earthly harm
One day when my weary soul is at rest
I'm going home to be forever blessed
Trust and never doubt
Jesus will surely bring you out
He never failed me yet
He never failed me, He never failed me yet
He never failed me, He never failed me yet
He never failed me, He never failed me yet
He never failed me, He never failed me yet
He never failed me, He never failed me yet
He never failed me, He never failed me yet
He never failed me, He never failed me yet
Trust and never doubt
Jesus will surely bring you out
Monday, September 12, 2011
Torture
What is torture to a cancer parent? Going to a routine blood count check only to be told that the blood counts are not perfect and to come back in two weeks to get them checked again. Waiting. That is torture.
Maggie went in for her routine check up (we are now going every 2 months). Her blood counts came back with a low ANC (ability to fight infection) of 940. Her lymphocytes were high at 80% (normal cut off is 74%). Dr. French ended up writing in her chart a viral suppression (meaning her ANC is being suppressed due to a virus). We do have a virus running through our house. Colin is fighting his first cold and while Maggie does not have a runny or stuffed nose, sore throat, or cough, last week her voice sounded a bit nasally. We are hoping and praying that this virus has indeed affected Maggie's counts and it is not the other (cancer).
I spoke with my hem/onc nurse who normally calms me down during moments like these. While she did affirm what Dr. French said as a likely virus response, she said "she doesn't have a crystal ball" and does not know for sure what it might be. For some reason, this time around, while she didn't say anything too scary, it just wasn't as comforting as it should have been. She also said it is standard protocol to have counts redrawn if the ANC is below 1000.
So, we wait until September 23 to see what Maggie's counts will do. We pray that they recover and that she continues to prove to us that she is cancer free. If you would please pray for Maggie that she is indeed healed of cancer and for peace of mind for us.
Maggie went in for her routine check up (we are now going every 2 months). Her blood counts came back with a low ANC (ability to fight infection) of 940. Her lymphocytes were high at 80% (normal cut off is 74%). Dr. French ended up writing in her chart a viral suppression (meaning her ANC is being suppressed due to a virus). We do have a virus running through our house. Colin is fighting his first cold and while Maggie does not have a runny or stuffed nose, sore throat, or cough, last week her voice sounded a bit nasally. We are hoping and praying that this virus has indeed affected Maggie's counts and it is not the other (cancer).
I spoke with my hem/onc nurse who normally calms me down during moments like these. While she did affirm what Dr. French said as a likely virus response, she said "she doesn't have a crystal ball" and does not know for sure what it might be. For some reason, this time around, while she didn't say anything too scary, it just wasn't as comforting as it should have been. She also said it is standard protocol to have counts redrawn if the ANC is below 1000.
So, we wait until September 23 to see what Maggie's counts will do. We pray that they recover and that she continues to prove to us that she is cancer free. If you would please pray for Maggie that she is indeed healed of cancer and for peace of mind for us.
Thanks to A Kid Again, we were able to attend a Dayton Dragons game. The photos are from the game.
Tuesday, August 30, 2011
Maggie's First Haircut
After 3 years and 10 months, we decided it was time to cut Maggie's hair. Her hair had multiple layers in it from the starts of growth from her treatment. We didn't go crazy with her hair, but only cut the bottom layer (this layer started growing after her intense treatment and never fell out again). It was a bit bittersweet to see it go, but in cutting her hair, a part of us feels like we are saying, "See cancer, we can and have moved on!"
Maggie was not too excited about getting her hair cut until I showed her a video and she saw that the little girl got to ride in a car and get a balloon. The balloon sold it. She was afraid though that the scissors would hurt, but as she was leaving the salon, she said, "It didn't hurt after all." She was quite excited to have her hair cut and ended up calling several people to tell them and show them on skype. It was a first of many!
Maggie was not too excited about getting her hair cut until I showed her a video and she saw that the little girl got to ride in a car and get a balloon. The balloon sold it. She was afraid though that the scissors would hurt, but as she was leaving the salon, she said, "It didn't hurt after all." She was quite excited to have her hair cut and ended up calling several people to tell them and show them on skype. It was a first of many!
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| She chose the pink car, but next time she wants the pink airplane. |
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| The length before the cut. |
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| The length after the cut. This is also Maggie's favorite picture because it shows The Berenstain Bears that she was watching. |
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The after shot.
Monday, August 22, 2011
Changes, Changes
We have been busy, busy the last month,which is the reason for the lack of posts. We are in the process of making a lot of changes... First off, a big moment in our family's life was Andy's passing of his psychology licensure test. He has been studying for over 6 months and has been working very hard. In the last couple of months, the kids and I have left for a week at a time to give Andy study time. We have all sacrificed for this test and it has paid off. Andy is currently volunteering to finish his post-doc by the end of August. He will then have one more oral exam to take and once he has passed that, he will be a licensed psychologist. The hope is that by the end of September, Andy will be beginning a new job as a licensed psychologist in Medina, Ohio. Therefore, we will be moving back to northeast Ohio, where our family lives. We are very much looking forward to moving back near home, near our support system. After everything we have been going through with Maggie the last 3 years, we know how much more important it is to have family support nearby.
We have been working very hard at getting our house in order to sell. On Thursday, we officially put our house up on the market--a scary process. We are hoping to have our house sold before Andy begins his job, which might be a bit of a stretch, but we are praying this might happen. There are a lot of unknowns right now (quite honestly, that has been the theme of our life the last 3 years). We know that God has watched over us throughout Maggie's treatment, and we feel that God will continue to do so. There is a lot of excitement in the air and we look forward to what the future holds.
Just a few pictures of this past weekend. We were happy to celebrate the wedding of a friend in Pennsylvania. We enjoyed the weekend get-away.
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| Maggie was a great passenger. And quite cool in my shades. |
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| Our updated family picture. |
Tuesday, July 5, 2011
No Worry
Today marks a big day for us. We went to the clinic for monthly labs and they came back great (though this was the first time we didn’t have the port and unfortunately Maggie is a very hard stick. She ended up having to give 3 vials of blood through a finger prick, which I’m told hurts worse than using a vein). Maggie was so brave and did so well. She didn’t shed a tear when they were searching for a vein with the needle in her arm. Squeezing the blood from her finger was the most painful part and she told me she didn’t want to go to her doctor’s appointment ever again. We got the great news that we will be moving to every other month appointments now. This is a great feat as it means that she is further along post-treatment and every month she goes in remission is a month closer to being cured (5 years post-treatment is considered “cured”). While this is excellent news, there is a sense of comfort in getting counts checked monthly. On the other hand, monthly appointments also bring on a nervousness that would otherwise not be there.
Another reason why this is a big day is that Colin is the age that Maggie was at her diagnosis. It brings on many different emotions. I mentioned this day to one of the nurses today and she remembers Maggie the day she was diagnosed. She remembers her pudginess and red hair. She and everyone we meet always comment on how Maggie and Colin look so much alike (minus the color of hair). It’s sad to remember that this innocent little baby was about to start the hardest road of her life. It’s cruel what she had to endure and no baby should ever have to experience that.
Though Colin’s chances of getting leukemia are very small, I still worry about him. And for this reason, getting to today and having him healthy is a big milestone (for me anyways). I will probably continue to check off big milestones related to cancer, for example, him turning a year and being cancer free (because I now know that his survival rate just increased by 30%). It’s just the way my mind works now.
Clinic days and blood count days will always be a big day for us. If this day ever becomes routine, it will be amazing. But regardless of the type of day it is, we will always celebrate because we will never take for granted great counts. So today, we celebrate because for at least today, there is NOTHING to worry about! No lung issues, no cancer issues, only a mild case of acid reflux (but we can live with that). Ahh, how nice it is to say that.
Thursday, June 30, 2011
3 Years!
We aren't totally done worrying about Maggie; we'll let you know when that day comes. But today was another big day and a good sign that her cancer has not come back. We look forward to more anniversaries coming and going with more good health reports.
Monday, June 20, 2011
Thank you
Thank you all for your concern and kind thoughts. Maggie did wonderfully today. After the procedure, we were advised that Maggie should lay low for the day, to let the anesthesia wear off, to get some rest. Well, she was bouncing around just like any other day. She had some stories to tell this evening, for instance saying that she didn't like this kind of doctor's appointment (she enjoys visiting the hem/onc clinic and Dr. French and the nurses). Also, of the anesthesia mask that they put in her face, she recalled "I told them I didn't want to smell it!" Upon waking and finding an uncomfortable IV in her foot, she cried and cried and said, "My foot says get it off of me! My foot says get me out of here!" She showed her red-haired spunk that has gotten her through so much.
As for the results, we couldn't be happier. Her stomach looks normal, only minimal signs that something was wrong in the past but had since healed. Her bronchoscopy was normal, too. Her lungs, most importantly, looked good, too. The doctors never knew what to tell us about the kind of recovery her lungs would have, wondering if she'd have permanent damage from the scarring. However, we were told today that her lungs looked normal! Not just "good considering what she went through," but NORMAL!
So, again, we couldn't be any happier. We have to wait a couple of days to get results from the cell cultures from both her lungs and stomach (the last word), but based on the way she looked, we don't have too much to worry about.
Finally, her port is gone, no longer needed, and it came out easily and without complication.
More good days are ahead for Maggie and her family!
As for the results, we couldn't be happier. Her stomach looks normal, only minimal signs that something was wrong in the past but had since healed. Her bronchoscopy was normal, too. Her lungs, most importantly, looked good, too. The doctors never knew what to tell us about the kind of recovery her lungs would have, wondering if she'd have permanent damage from the scarring. However, we were told today that her lungs looked normal! Not just "good considering what she went through," but NORMAL!
So, again, we couldn't be any happier. We have to wait a couple of days to get results from the cell cultures from both her lungs and stomach (the last word), but based on the way she looked, we don't have too much to worry about.
Finally, her port is gone, no longer needed, and it came out easily and without complication.
More good days are ahead for Maggie and her family!
Thursday, June 16, 2011
The Big Day!
The big day is coming! Maggie is having her smorgasbord of procedures and surgery on Monday, June 20. Each of her specialists wanted to get a sense of how she's healed in the year plus since her critical illness last spring. So, they are combining them all in one extended procedure so she doesn't have to be put under more than once. She will be having a scope done of her belly to check the status of her ulcers. She will have a bronchoscopy and washing done of her lungs to see what types of cells are present. She will also have a CT scan to check her current lung health and recovery from her lung injury. Finally, she will have her port removed, something that most children have removed within the first 3 months off of treatment. Dr. French thinks that Maggie's immune system has recovered enough to not have to need IVIG's anymore (immune system antibodies) and that she doesn't need to have a central IV line. The removal of her port signifies the true END of the last nearly three years of Maggie's treatment.
These procedures require Maggie to obviously be sedated, but also intubated (put on a ventilator). Both of these situations bring some worry to me (though Andy thinks it will be routine). Last year, the pulmonary doctors wanted to do a repeat CT scan of Maggie's lungs while she was still hospitalized, but the oncologists thought that it would be too risky to undergo a procedure like that (one that would require sedation and intubation again). For this reason, I would ask if you would say a prayer for Maggie on Monday morning. Her procedures begin at 8:38 (ironically, the same time of the day that she was born). I hope and expect that this day will be the last page in Maggie's "cancer" book.
These procedures require Maggie to obviously be sedated, but also intubated (put on a ventilator). Both of these situations bring some worry to me (though Andy thinks it will be routine). Last year, the pulmonary doctors wanted to do a repeat CT scan of Maggie's lungs while she was still hospitalized, but the oncologists thought that it would be too risky to undergo a procedure like that (one that would require sedation and intubation again). For this reason, I would ask if you would say a prayer for Maggie on Monday morning. Her procedures begin at 8:38 (ironically, the same time of the day that she was born). I hope and expect that this day will be the last page in Maggie's "cancer" book.
Thursday, June 2, 2011
Relief
You would think that as time goes by, clinic visits would become easier for us, but that just isn't the case...yet. We had our monthly clinic visit scheduled for next Tuesday, but I called this morning to see if we could change it to tomorrow, so that I can take the kids out of town for a week plus. Dr. French wasn't in tomorrow, but they could squeeze us in today. Alright, we'll take it (insert increased anxiety).
Why after all this time are we still nervous? Last month we went in feeling pretty good and then got Maggie's counts and were a bit disappointed. Maggie's ANC (fights infection) was 1380. We've always been told that 1500 is normal, so we saw it as below normal. In the last several months, Maggie's ANC has slowly trended down and this has made us slightly worried. Dr. French said that her numbers were fine and not to worry, but this past month we have unfortunately done just that...worry. Yes, we are told not to, but it is hard when you've lived through what we have lived through.
So, our thoughts all month have been, "we just need to get to this next clinic appointment and counts." And that moment came very quickly upon us this morning. And how did she do? Excellent. Relief, complete relief and happiness is what we felt once her numbers came in. Maggie had an ANC of 2100. Perfect numbers. We are so happy and for once in a long time, we feel that we can relax and enjoy our life. I can't promise that worry won't creep up on us and we won't analyze every little bruise and mark, but for this one brief moment we have complete relief knowing that Maggie is PERFECT. That feeling is one of the best feelings ever.
Why after all this time are we still nervous? Last month we went in feeling pretty good and then got Maggie's counts and were a bit disappointed. Maggie's ANC (fights infection) was 1380. We've always been told that 1500 is normal, so we saw it as below normal. In the last several months, Maggie's ANC has slowly trended down and this has made us slightly worried. Dr. French said that her numbers were fine and not to worry, but this past month we have unfortunately done just that...worry. Yes, we are told not to, but it is hard when you've lived through what we have lived through.
So, our thoughts all month have been, "we just need to get to this next clinic appointment and counts." And that moment came very quickly upon us this morning. And how did she do? Excellent. Relief, complete relief and happiness is what we felt once her numbers came in. Maggie had an ANC of 2100. Perfect numbers. We are so happy and for once in a long time, we feel that we can relax and enjoy our life. I can't promise that worry won't creep up on us and we won't analyze every little bruise and mark, but for this one brief moment we have complete relief knowing that Maggie is PERFECT. That feeling is one of the best feelings ever.
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| We attended the Emily's Beads of Courage Dayton Dragon's event a couple of weeks ago. |
Sunday, May 8, 2011
One Year
A year ago yesterday, May 7, we brought Maggie home from the longest journey we had ever been on. Since that day, we have not spent a night in the hospital. I have read some of our post-ICU stay blogs and what the doctor's said about Maggie's recovery. They had said that it would take a year for Maggie's lungs to recover. While we still do not know the state of Maggie's lungs, it has been a year so we hope that they are fully recovered. We will find this out sometime soon, though her procedures have not yet been scheduled. In the past year, Maggie has yet to get a cold, therefore, we don't know how her body will respond to a cold. We continue to keep her oxygen supplies "just in case."
We never were able to formally thank you all for your prayers, prayer quilts, support through money and gift cards, and gifts for Maggie. You all have helped us through the last almost 3 years and we are very grateful. Our journey is not over, but hopefully we will never have to experience what we experienced the last 3 years. We appreciate your continued prayers for Maggie.
The photos were taken on Easter Sunday.
Saturday, April 16, 2011
Moving Forward
Maggie had her monthly clinic appointment on Monday this past week. Everything looked good and we received some word about "the plan." Dr. French asked Maggie if she was ready to get her port taken out, to which she nodded yes. So, that's the plan. I made the call to Cincinnati and Dr. Mezoff's nurse is working on arranging GI, pulmonary, and a surgeon to hopefully do all procedures in one surgery. It probably won't happen until sometime in May, if all goes well. Either way, we are looking forward to this next step. Most children, when they finish treatment have their port removed within a couple of months, but given Maggie's serious illness, Dr. French wanted to give her an immune booster throughout the cold/flu season. We made it through!
In other news, Miss Maggie is now potty trained. Last month, she decided one day she was done going in her diaper. I put a lot of work into potty training a couple of months ago, but I guess she wanted to do it on her time. Either way, we are very proud of her.
In other news, Miss Maggie is now potty trained. Last month, she decided one day she was done going in her diaper. I put a lot of work into potty training a couple of months ago, but I guess she wanted to do it on her time. Either way, we are very proud of her.
Thursday, April 7, 2011
My Paternal Grandma
My paternal Grandma passed away this morning after suffering a head trauma from a fall last Wednesday. We were told she would not make it more than 24 hours, but she lasted a week. Not only was she a strong woman, but she was kind, generous, loving and always happy. We are incredibly sad and would appreciate prayers for my Grandpa and family.
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| Great Grandpa and Grandma Lehman with their great grandchildren. |
Monday, March 14, 2011
All is Well
I want to thank you again for all of your prayers. It has been a crazy kind of month with the different ways that we have been tested in regards to Maggie's health. Maggie's numbers all looked good today, including her electrolytes, which I was a bit worried about given her lack of liquids this past week. Everyone worked very quickly to get us in and out. We were there for only 3 1/2 hours. Maggie, however, was very ready to go after about 30 minutes. She normally doesn't mind the clinic, but after being forced to take Tylenol, she was upset and wanted to go home to "play outside." She talked about getting a toy at the clinic for the last couple of days, but even refused that. So, she was a little rough, but we will gladly take a grouchy, healthy Maggie any day.
Thank you again for your prayers. The further we get from the end of treatment, you would think it would get easier, but it hasn't yet. We hope maybe with these good blood counts, we might be able to relax a little. We sure could use a break from worrying.
Thank you again for your prayers. The further we get from the end of treatment, you would think it would get easier, but it hasn't yet. We hope maybe with these good blood counts, we might be able to relax a little. We sure could use a break from worrying.
Sunday, March 13, 2011
Prayers
Maggie has her clinic visit tomorrow. Please keep her in your prayers. We feel that tomorrow is a very important day for us. We believe that Maggie had the flu this past week (I say "believe" because we have never experienced a "normal" illness before, so we aren't entirely sure what to make of things). She vomited several times last Tuesday morning and since then her appetite has been very poor. She has also refused drinking and so we have had very few wet diapers. Today was the first time that we saw better urine output.
With our scare two weeks ago, we are a little frazzled and worry easily. We pray that tomorrow is another good day and that it continues to remind us that Maggie is indeed healed. Please pray for a great clinic appointment and that Maggie is completely healed of cancer. Thank you.
With our scare two weeks ago, we are a little frazzled and worry easily. We pray that tomorrow is another good day and that it continues to remind us that Maggie is indeed healed. Please pray for a great clinic appointment and that Maggie is completely healed of cancer. Thank you.
Tuesday, March 1, 2011
One Rough Week
The past week has been a very rough one for us. It started out last week with Colin going to the doctors with a really bad case of cradle cap and rash. The doctor thought it would ease our (my) worried minds if we did a blood test on him to just show he was okay (given Maggie's history). We didn't want this, but went with it because it would show some allergy issues, which might be the cause of Colin's rash. They drew blood Wednesday at 5:30 and said that we wouldn't hear results until the next morning. The night of waiting reminded us of the weekend of waiting that we did almost 3 years ago. It was torture and it started a whirlwind of memories, fears, worries, etc. The next morning she called and told us there were some numbers that were too high and others that were too low. She wanted to send it over to Maggie's oncologist to have them look it over. Nobody ever wants to hear something like that. Later in the afternoon we got a call from the oncology nurse that the numbers were fine. While the doctor was only thinking she was doing us a favor, it ended up being quite torturous and we just haven't quite recovered from it.
Skip ahead to yesterday, with our nerves already frazzled, I was playing with Maggie and found a bump on the back of her neck. An immediate feeling of sickness came over my body and I immediately called the hem/oc clinic. The nurse I confide in said that it was best if we wait a couple of days to see if it grows or changes. I think one of the most torturous things to do to a parent who has a child with a history of cancer is to make them wait. After awhile I called them back and requested blood counts immediately. They called later and wanted to see Maggie instead, saying that it might not necessarily show up in the counts. Again, a night of waiting, not eating, not sleeping...torture.
We went in to see Dr. French and he labeled it benign, most likely from the eczema on her head, neck, and body. He will take a look at it in two weeks at Maggie's monthly clinic visit, but for now, we need to start eating again.
Worry. That's all I ever do anymore. I just can't get past the worry. I know what I need to do, but it is so hard after all that we've been through. I'm told it's a process, but when moments like the last week that we've had come around, everything resurfaces. My psychologist husband says it's PTSD (post traumatic stress disorder) and Maggie's nurse agrees. What we have been through in the last 2 1/2 years has been so scary (that's putting it kindly) and we are completely frazzled.
We thank you so much for the outpouring support and prayers, and I ask that you continue to pray for Maggie that she will remain cancer-free and healthy. I also ask that you pray for us. We are worn out.
Skip ahead to yesterday, with our nerves already frazzled, I was playing with Maggie and found a bump on the back of her neck. An immediate feeling of sickness came over my body and I immediately called the hem/oc clinic. The nurse I confide in said that it was best if we wait a couple of days to see if it grows or changes. I think one of the most torturous things to do to a parent who has a child with a history of cancer is to make them wait. After awhile I called them back and requested blood counts immediately. They called later and wanted to see Maggie instead, saying that it might not necessarily show up in the counts. Again, a night of waiting, not eating, not sleeping...torture.
We went in to see Dr. French and he labeled it benign, most likely from the eczema on her head, neck, and body. He will take a look at it in two weeks at Maggie's monthly clinic visit, but for now, we need to start eating again.
Worry. That's all I ever do anymore. I just can't get past the worry. I know what I need to do, but it is so hard after all that we've been through. I'm told it's a process, but when moments like the last week that we've had come around, everything resurfaces. My psychologist husband says it's PTSD (post traumatic stress disorder) and Maggie's nurse agrees. What we have been through in the last 2 1/2 years has been so scary (that's putting it kindly) and we are completely frazzled.
We thank you so much for the outpouring support and prayers, and I ask that you continue to pray for Maggie that she will remain cancer-free and healthy. I also ask that you pray for us. We are worn out.
Monday, February 28, 2011
Say A Prayer
If you could say a little prayer for Maggie, we found a pea-sized bump on the back of her neck. We have an appointment with Dr. French tomorrow. Pray that it is benign. We are sick with worry.
Friday, February 25, 2011
One Year
Today marks a very important day--one year off of treatment. That's a big milestone in Maggie's journey to healing. Along with this day, marks a year ago that Maggie was admitted into the hospital for what would be the 10 hardest weeks of our lives. You would never know, looking at Maggie, what she endured and thankfully she doesn't remember a thing. Maggie is the happiest little girl and we are so thankful to have her in our lives.
Enjoy the pictures that were taken back in December by Erika Ressler (http://erika-marie.blogspot.com/).
She is our "Miracle Maggie."
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