Ethan's chemo went well today with no allergic reactions at all! Praise the Lord! Ethan has been such a champ and brave little man handling all of this new stuff so well. I am so very thankful that he has been upbeat and for the most part fairly cooperative with all of the new pokes and prods and meds and tiny hospital room and all of these things that make up our life here in the hospital. Tonight he was so talkative that he hardly ate any of his supper telling us all about the different things he has been doing and wondering about the different things in our room. God has blessed us with such a precious, curious boy.
Thanks for praying. Our next chemo is scheduled for Tuesday.
Friday, January 31, 2014
chemo today
Just a quick update on today's plan. Ethan's midnight blood work came back and showed low hemoglobin levels (hemoglobin is a measure of how well his red blood cells are able to carry oxygen - I think) and so he needed to have a blood transfusion over night that got started at about 3am. Everything went fine and after some chatter and a bag of chips, Ethan fell back asleep for a few hours. We are told that blood and platelet transfusions will really become a normal part of his routine, especially as we get started with treatment.
Today he will receive his next dose of a chemo drug that apparently often causes allergic reactions in patients, just because of the way that the chemo attacks the blood. This includes anything from a rash up to an anaphylaxic reaction. Because of this, Ethan will be monitored very closely and have vitals taken every 15 minutes throughout so that they are prepared to respond immediately. And even if he does have an allergic reaction, they will treat the reaction and then continue giving the drug. Not giving the drug is not an option.
With all that said, can you please pray for Ethan today? He should receive this chemo drug this afternoon and I think it take a couple of hours to complete.
Thank you all so much for your continued prayers!
Today he will receive his next dose of a chemo drug that apparently often causes allergic reactions in patients, just because of the way that the chemo attacks the blood. This includes anything from a rash up to an anaphylaxic reaction. Because of this, Ethan will be monitored very closely and have vitals taken every 15 minutes throughout so that they are prepared to respond immediately. And even if he does have an allergic reaction, they will treat the reaction and then continue giving the drug. Not giving the drug is not an option.
With all that said, can you please pray for Ethan today? He should receive this chemo drug this afternoon and I think it take a couple of hours to complete.
Thank you all so much for your continued prayers!
Thursday, January 30, 2014
quick update
Just a quick update on how things are going here in the hospital. Ethan started his chemo treatment officially on Tuesday night and things have been fairly minimal in terms of side effects, thankfully. He is scheduled to have chemo again tomorrow (Friday) and then the schedule is usually to have it once a week or so.
We have a whole new language of medicine, treatment and human body functioning to learn and the nurses and doctor team are all very wonderful about explaining and re-explaining what certain things mean and what we are supposed to look for in terms of symptoms, etc. but it is definitely going to take some time to really understand how things work and the schedule around here in terms of rounds, meds, and everything else.
Since leukemia is a cancer of the blood, Ethan has to have his blood checked at least once a day, and usually more since some of the chemo drugs and other medicines that he has to take can effect his blood counts and levels. This morning his platelet count was low - which is a normal part of the process since the chemo isn't smart enough to only kill the leukemic cells, it also kills his healthy blood cells. So, from time to time he will need to have blood transfusions to replace what's been depleted of his healthy red blood cells and platelets, and his body will have to do the work to make more white blood cells (This is at least how I understand it so far, as a new leukemia cancer mom).
All this to say, Ethan's platelet count was low and so he had to have a platelet transfusion this morning which went just fine. It sounded a lot scarier than it was - really nothing more than hooking up another bag to his IV pole and making sure he didn't have any kind of reaction. We've had a chance to visit the playroom today (a HUGE blessing for our very active 3 year old) and have mostly been just hanging out.
Eloise has been taken care of extremely well - an unbelievable blessing. We've gotten to see her almost every day, and it is a bright time for Ethan to get to see his sister and for her to see her big brother.
Specific prayer requests:
-His next chemo drug will be given tomorrow. Pray that he would experience minimal/no side effects.
-Stamina for all of us during this first round of treatment. It's a lot for all of us to take in, and we are taking things one day at a time.
-Discernment in helping to figure out a balance between caring for both Ethan and Eloise. Eloise is well taken care of but we miss her and want to make sure she knows how much we love her too.
Thank you all so much for your continued prayers for our family.
We have a whole new language of medicine, treatment and human body functioning to learn and the nurses and doctor team are all very wonderful about explaining and re-explaining what certain things mean and what we are supposed to look for in terms of symptoms, etc. but it is definitely going to take some time to really understand how things work and the schedule around here in terms of rounds, meds, and everything else.
Since leukemia is a cancer of the blood, Ethan has to have his blood checked at least once a day, and usually more since some of the chemo drugs and other medicines that he has to take can effect his blood counts and levels. This morning his platelet count was low - which is a normal part of the process since the chemo isn't smart enough to only kill the leukemic cells, it also kills his healthy blood cells. So, from time to time he will need to have blood transfusions to replace what's been depleted of his healthy red blood cells and platelets, and his body will have to do the work to make more white blood cells (This is at least how I understand it so far, as a new leukemia cancer mom).
All this to say, Ethan's platelet count was low and so he had to have a platelet transfusion this morning which went just fine. It sounded a lot scarier than it was - really nothing more than hooking up another bag to his IV pole and making sure he didn't have any kind of reaction. We've had a chance to visit the playroom today (a HUGE blessing for our very active 3 year old) and have mostly been just hanging out.
Eloise has been taken care of extremely well - an unbelievable blessing. We've gotten to see her almost every day, and it is a bright time for Ethan to get to see his sister and for her to see her big brother.
Specific prayer requests:
-His next chemo drug will be given tomorrow. Pray that he would experience minimal/no side effects.
-Stamina for all of us during this first round of treatment. It's a lot for all of us to take in, and we are taking things one day at a time.
-Discernment in helping to figure out a balance between caring for both Ethan and Eloise. Eloise is well taken care of but we miss her and want to make sure she knows how much we love her too.
Thank you all so much for your continued prayers for our family.
thankful
Perhaps it's strange to think about being thankful when your 3 year old son has just been diagnosed with cancer, but in the last 6 days, Pete and I have had so many moments of finding ourselves so incredibly thankful not only to God but to the whole army of family and friends that we have surrounding us. A few things in particular:
- For the nurse practitioner at our pediatrician's office who decided to get the blood tests ordered on Ethan when all I had taken him in for was an extra long runny nose. We are so incredibly grateful that we were able to discover Ethan's leukemia before he began really suffering from any symptoms.
- For chemo. That sounds strange, especially since the mention of chemo in my children would have been the scariest thought I could have ever fathomed or imagined prior to this week. But today I am thankful for chemo, because it can save my boy's life.
- For Ethan's hair. I have been meaning for at least the last few weeks to buzz it and give him a hair cut but each day I would forget or we wouldn't get to it, etc. Now, I am SO thankful that his hair wasn't cut so that I can enjoy it for the next couple weeks before it takes a hiatus for a while.
- For a wonderful team of doctors and nurses here at Children's that truly care about Ethan and want the best treatment for him.
- For the army of family and friends that have surrounded us and truly carried us through these last 5 days. From food, to support, to prayer, to gathering things to Target runs, to cleaning our house, to taking care of our sweet Eloise - you name it, it's been done, and done well.
- For prayer that we have literally felt sustaining us through this entire week. It is incredible to know how many people are praying for us and for Ethan and Eloise. This was especially true during his sedation on Monday where we literally did not know what the outcome would be - even in the fear/despair/depth of that time there was a sustaining peace that cannot be attributed to anything else but God and the army of prayer warriors on their knees on our behalf.
- For Eloise's care team. She has been been cared for so well and it has been such a huge blessing to know that my daughter is being being loved so very well during this abrupt life transition that has also changed her entire life too.
- For Ethan's continued joy. This has been one of the biggest prayers on my heart - that his delightful disposition and joyful spirit would remain steadfast. Yesterday, despite having received chemo the night before, my boy was belting out all of the songs that he knows with the same gusto that he normally does. Please pray that this would continue to be so.
Wednesday, January 29, 2014
diagnosis
January 28th, 2014
Today our day began bright and early with our sweet Ethan at 4am. I mean really, trying to sleep in a hospital room with all the distractions and comings and goings of nurses and doctors is quite challenging for anyone, let alone my precious curious boy. Our day was busy spent with friends and family stopping by to hang out with us and Ethan was in great spirits, although very tired at the same time since he had about 6 hours of sleep the night before and was up from 4am to around 7pm.
We were also able to receive news of his official diagnosis. Ethan has what is called Acute Lymphoblastic Leukemia (ALL) which is the most common kind of leukemia - a cancer of the blood and bone marrow. His particular version of ALL has to do with T-Cells. Here is a link to some information on this particular kind of cancer:
http://www.cancer.gov/cancertopics/pdq/treatment/childALL/patient
We also learned that his spinal tap was negative for cancer cells in his cerebral spinal fluid, which was great news that will mean less chemo treatment in his spinal column.
We can expect his chemotherapy treatment to be 3 years in length, which much of his therapy eventually being outpatient once we get through the first 6 months of on and off hospital stays. We will be beginning his chemo treatment today and can plan to be in the hospital for up to 30 days.
Please pray specifically for Ethan's complete healing. For his comfort during chemo treatments and for all of us to be brave as we take on this new chapter that we did not intend to write in our lives. Thankful that God goes before us and that he will take care of us. Thankful for all of our family and friends who have loved us so well in the last few days.
Will update more tomorrow.
Today our day began bright and early with our sweet Ethan at 4am. I mean really, trying to sleep in a hospital room with all the distractions and comings and goings of nurses and doctors is quite challenging for anyone, let alone my precious curious boy. Our day was busy spent with friends and family stopping by to hang out with us and Ethan was in great spirits, although very tired at the same time since he had about 6 hours of sleep the night before and was up from 4am to around 7pm.
We were also able to receive news of his official diagnosis. Ethan has what is called Acute Lymphoblastic Leukemia (ALL) which is the most common kind of leukemia - a cancer of the blood and bone marrow. His particular version of ALL has to do with T-Cells. Here is a link to some information on this particular kind of cancer:
http://www.cancer.gov/cancertopics/pdq/treatment/childALL/patient
We also learned that his spinal tap was negative for cancer cells in his cerebral spinal fluid, which was great news that will mean less chemo treatment in his spinal column.
We can expect his chemotherapy treatment to be 3 years in length, which much of his therapy eventually being outpatient once we get through the first 6 months of on and off hospital stays. We will be beginning his chemo treatment today and can plan to be in the hospital for up to 30 days.
Please pray specifically for Ethan's complete healing. For his comfort during chemo treatments and for all of us to be brave as we take on this new chapter that we did not intend to write in our lives. Thankful that God goes before us and that he will take care of us. Thankful for all of our family and friends who have loved us so well in the last few days.
Will update more tomorrow.
Tuesday, January 28, 2014
the hardest day
Monday January 27th
Today was the hardest day yet, by far. The day we finally made the most public announcement about Ethan's diagnosis, and the day that I am getting started on recording all of this on our family blog. I've debated in my mind how to update all of our family and friends who love Ethan and us and want to be praying and in the loop on what's going on -- wanting to be sensitive to our little man's story but also realizing more than ever how God is really the author of our whole family's story and that this is now a part of it. And if I don't tell this story, than none of you will know how God has sustained us, carried us, orchestrated and prepared us for this --- and used so many of you to care for us. And, we need your prayers to sustain us, and ultimately covet your prayers for our boy's complete healing.
Back to today. We knew it was going to be a long day as Ethan was scheduled to have several tests and procedures done --- a CAT scan to see more clearly what the mass on his chest is (possibilities include an actual tumor or many enlarged lymph nodes gathered in that area); an echocardiogram to check his heart and then sedation to have a bone marrow biopsy. The bone marrow biopsy is what will actually tell us what kind of leukemia he has, which will then determine what his treatment will be.
The CAT scan and echo went off without a hitch and Ethan was super brave and stayed still enough for both of those tests to be done relatively easily and quickly. After that we got a chance to check out the play room which had a ton of fun things for Ethan to play with and explore.
Ethan was scheduled for his sedation at 1:15pm but we were taken down probably around 12:30. The team of doctors spent a great amount of time debating whether Ethan should even be sedated because of his chest mass that we learned is covering his aorta, pulmonary artery and trachea. The risk of anasthesia is dangerous because once his body relaxes, there was a risk of the mass collapsing on to any or all 3 of those very critical places in his body - which would result in any number of life threatening situations, including death. They decided that they were going to try and do 3 procedures without sedation due to that risk - placing a pic line in his arm so that he can receive his chemo, a spinal tap of his back to draw fluid and determine if the cancer is in his CNS fluid, and a bone marrow biopsy that would tell us what kind of cancer Ethan has and ultimately determine treatment. However, if they were not able to hold him down for him to be still enough for those procedures, they would have to proceed with the sedation anyway, in order to get these procedures done that he needs in order to save his life.
It is impossible to even describe the fear and emotion of that moment, knowing that this is what we had to do, despite the risk of devastating complications - in order to make it even possible for Ethan to have treatment for his cancer.
We spent the next hour in heavy prayer and emotion, truly feeling sustained by how many people were praying for Ethan and the doctors. And then our doctors came out and told us that it went well! That they did have to give him sedation but he did beautifully, and that there were no complications! Oh the rejoicing!!!!
After taking a little more time than usual to wake up, Ethan recovered very well from his sedation - ate great tonight and was bouncing off of the walls (in a good way!) for most of the evening, finally falling asleep around 10:30.
Tomorrow we will hopefully get to know more about what his specific type of leukemia is and what the plan is for treatment. Right now we know that we will likely be in the hospital for 30 days or so (perhaps less) as the first phase of treatment (called induction) will last that long. We can also expect his treatment to last anywhere from 1-3 years.
Specific things to pray for:
-Ethan's complete healing
-Pray against nightmares and bad dreams - this is a possible side effect of the sedation medication that was used today
-Discernment for doctors in determining a correct diagnosis and treatment plan
-Minds like sponges to really absorb all of this information on what is going on in Ethan's body, treatment plan, etc. We have entered a completely new world of jargon and it is going to take some time to really understand things and I need a mind that is able to process the information we are being given clearly and coherently.
Today was the hardest day yet, by far. The day we finally made the most public announcement about Ethan's diagnosis, and the day that I am getting started on recording all of this on our family blog. I've debated in my mind how to update all of our family and friends who love Ethan and us and want to be praying and in the loop on what's going on -- wanting to be sensitive to our little man's story but also realizing more than ever how God is really the author of our whole family's story and that this is now a part of it. And if I don't tell this story, than none of you will know how God has sustained us, carried us, orchestrated and prepared us for this --- and used so many of you to care for us. And, we need your prayers to sustain us, and ultimately covet your prayers for our boy's complete healing.
Back to today. We knew it was going to be a long day as Ethan was scheduled to have several tests and procedures done --- a CAT scan to see more clearly what the mass on his chest is (possibilities include an actual tumor or many enlarged lymph nodes gathered in that area); an echocardiogram to check his heart and then sedation to have a bone marrow biopsy. The bone marrow biopsy is what will actually tell us what kind of leukemia he has, which will then determine what his treatment will be.
The CAT scan and echo went off without a hitch and Ethan was super brave and stayed still enough for both of those tests to be done relatively easily and quickly. After that we got a chance to check out the play room which had a ton of fun things for Ethan to play with and explore.
Ethan was scheduled for his sedation at 1:15pm but we were taken down probably around 12:30. The team of doctors spent a great amount of time debating whether Ethan should even be sedated because of his chest mass that we learned is covering his aorta, pulmonary artery and trachea. The risk of anasthesia is dangerous because once his body relaxes, there was a risk of the mass collapsing on to any or all 3 of those very critical places in his body - which would result in any number of life threatening situations, including death. They decided that they were going to try and do 3 procedures without sedation due to that risk - placing a pic line in his arm so that he can receive his chemo, a spinal tap of his back to draw fluid and determine if the cancer is in his CNS fluid, and a bone marrow biopsy that would tell us what kind of cancer Ethan has and ultimately determine treatment. However, if they were not able to hold him down for him to be still enough for those procedures, they would have to proceed with the sedation anyway, in order to get these procedures done that he needs in order to save his life.
It is impossible to even describe the fear and emotion of that moment, knowing that this is what we had to do, despite the risk of devastating complications - in order to make it even possible for Ethan to have treatment for his cancer.
We spent the next hour in heavy prayer and emotion, truly feeling sustained by how many people were praying for Ethan and the doctors. And then our doctors came out and told us that it went well! That they did have to give him sedation but he did beautifully, and that there were no complications! Oh the rejoicing!!!!
After taking a little more time than usual to wake up, Ethan recovered very well from his sedation - ate great tonight and was bouncing off of the walls (in a good way!) for most of the evening, finally falling asleep around 10:30.
Tomorrow we will hopefully get to know more about what his specific type of leukemia is and what the plan is for treatment. Right now we know that we will likely be in the hospital for 30 days or so (perhaps less) as the first phase of treatment (called induction) will last that long. We can also expect his treatment to last anywhere from 1-3 years.
Specific things to pray for:
-Ethan's complete healing
-Pray against nightmares and bad dreams - this is a possible side effect of the sedation medication that was used today
-Discernment for doctors in determining a correct diagnosis and treatment plan
-Minds like sponges to really absorb all of this information on what is going on in Ethan's body, treatment plan, etc. We have entered a completely new world of jargon and it is going to take some time to really understand things and I need a mind that is able to process the information we are being given clearly and coherently.
Monday, January 27, 2014
day 2 - january 26th, 2014
Day 2 of our hospital stay - on Sunday January 26th - was relatively low key. Ethan's team of doctors had decided to wait until Monday to have all of the tests done that were needed for the official diagnosis and type of leukemia that he has. We got to spend the day getting used to our new room and all of the new things that are now a part of this new life - getting vitals checked every 4 hours, blood drawn every 8-12 and trying to figure out managing an IV pole and tubes with an energetic 3.5 year old.
Ethan was especially excited to see Grandpa Hank and Grandma Denise when they came to visit and we explored some of the fun things they have for patients here at the hospital - we painted some paintings and walked in the outdoor garden that they have. Ethan also had a great night of sleep, although it was a funny night for Pete - who was kicked out of our room when we ended up getting a roommate patient in the middle of the night.
Ethan was especially excited to see Grandpa Hank and Grandma Denise when they came to visit and we explored some of the fun things they have for patients here at the hospital - we painted some paintings and walked in the outdoor garden that they have. Ethan also had a great night of sleep, although it was a funny night for Pete - who was kicked out of our room when we ended up getting a roommate patient in the middle of the night.
day one - january 25th, 2014
It is fairly rare that in the course of a day, your entire life changes forever. Saturday, January 25, 2014 was that day in our family. We started off the day running errands, and ended it in the ER at Children's Hospital with a diagnosis that our precious boy, Ethan Matthew has cancer - most likely leukemia.
How did we get here?
By the grace of God, truly. I was at my sister's house on Friday and we were both contemplating calling our pediatricians for our kids who had lingering colds. Ethan had been stuffy with some thick snot for a couple of weeks and was looking pale - I figured he perhaps had a sinus infection. He also had a couple of bruises on his back that I had been watching and wondering about a little bit - but for anyone who knows my son - a bruise anywhere is not exactly out of the ordinary - he is an energizer bunny with a knack for random injuries and hard playing.
We were able to get in to see the nurse practitioner Friday morning and after a check up, she prescribed some antibiotics and also sent us to get some blood work done just to make sure that things were where they should be. We were told that if we got the blood work done Friday afternoon, we should expect the results by Monday. We went in at 4pm that day.
At 9:30 am the next morning (Saturday) I received a call from our pediatrician's office stating that the lab had already called them to say there were some abnormal cells in his blood. We were advised to go directly to the ER at Children's so that we could get all of the testing done necessary to see what was going on.
By the end of the day we were admitted, with the suspicion that Ethan has leukemia. A chest x-ray was done of his chest and it was discovered that he also has a mass in the middle of his chest that is apparently fairly common in leukemia patients.
How did we get here?
By the grace of God, truly. I was at my sister's house on Friday and we were both contemplating calling our pediatricians for our kids who had lingering colds. Ethan had been stuffy with some thick snot for a couple of weeks and was looking pale - I figured he perhaps had a sinus infection. He also had a couple of bruises on his back that I had been watching and wondering about a little bit - but for anyone who knows my son - a bruise anywhere is not exactly out of the ordinary - he is an energizer bunny with a knack for random injuries and hard playing.
We were able to get in to see the nurse practitioner Friday morning and after a check up, she prescribed some antibiotics and also sent us to get some blood work done just to make sure that things were where they should be. We were told that if we got the blood work done Friday afternoon, we should expect the results by Monday. We went in at 4pm that day.
At 9:30 am the next morning (Saturday) I received a call from our pediatrician's office stating that the lab had already called them to say there were some abnormal cells in his blood. We were advised to go directly to the ER at Children's so that we could get all of the testing done necessary to see what was going on.
By the end of the day we were admitted, with the suspicion that Ethan has leukemia. A chest x-ray was done of his chest and it was discovered that he also has a mass in the middle of his chest that is apparently fairly common in leukemia patients.
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