I am sorry that it has been awhile since I have updated the blog. Right now it feels like we are drowning in the ocean of life and we continue to get hit with one wave after the other. We are not able to catch our breath and swim to shore.
On September 11, we got hit with another wave of life shattering news. Merrick's mom, Lorna, was diagnosed with inflammatory breast cancer. On Mondy of this week we found out that her cancer has already spread to the bones. She had her first dose of chemo therapy yesterday. She will have chemo once every three weeks and then be rechecked to see how the cancer is responding to the chemo. This kind of cancer is rare and very agressive. But we have assured her that we serve an Almighty God who can do miracles and that her family and friends are with her every step of the way to remind her what she is fighting for!
As if that is not enough to try and deal with. I have been continuing on my Sprycel (chemo drug) and my numbers are decreasing and the side effects are increasing. Three weeks ago my white count was 116,000 then it was 22,000 and now this week it is down to 5,000. It is good that my white count came down but all my other numbers we staying in normal range except for this week. I noticed that all of them have also dropped so I am even more tired than usual and I caught Arianna's bad cold and it is taking me even longer to get over it because I do not have enough white blood cells to fight it off.
The side effects that are increasing is the joint and muscle pain, headache, hair loss, and there are changes in my vision that I have not noticed before. I am still trying to figure out when the best time to take the drug because now about 2 hours after I take it I become very nauseous and achy.
Not only are the physical side effects taking a toll on myself and Merrick but the emotional side effects are worse than ever. The Dr. keeps telling me I will have to find a new normal...well I am sorry to say that I do not like the "new normal." It quite frankly sucks! I am noticing that there are moments when I am paralyzed with fear that this is how it is going to be from now on or I will never be able to do that agian...or what if?? I do my best to shrug it off and pray for God to remove that thought from my head because I know that in a matter of seconds I will find myself stuck in a very dark, scary place that I do not want to be in.
However, on a much more positve note it is our precious baby girl's 2nd birthday tomorrow. I cannot believe she will be 2 already. When she was born she brought us so much joy and happiness, little did we know that that joy and happiness would carry us through the most difficult time in our lives! She is such a little cheerleader of me, Merrick, Lorna and the rest of our family. She has no idea the responsibility she has in distracting us and cheering us up. But I am so thankful she does not know what is going on. It is almost too much for adults to handle let alone a child. But I am even more thankful to God for giving us such precious little girl whom I am fighting my life for to be with!!
**Prayer Requests for this Week**
- Please pray for strength for Lorna for what she has to endure as well as a sense of peace that can only come from our heavenly Father.
- Please pray for her husband, Marlen. Pray for strength as he has to sit by and watch what his beloved has to endure. Also may he have a sense of peace from our heavenly Father.
- Please pray for Merrick. He has a lot to deal with- a demanding job, a family, and both his wife and mother are fighting a life threatening disease! May God uphold him and give him the strength he needs.
- Please pray that my numbers will balance out so we can figure out the right dosage of my chemo.
- Please pray that the side effects will diminish and not continue to get worse.
- Please pray to keep Satan away from our family. We are extremely susceptible to him right now and it is too easy to fall into his dark place where anger and bitterness is all you feel.
- Please pray for our families. We are dealing with so much that right now it feels unbearable. We need to feel God's presence as a sign that he is holding us and carrying us through each step of this unwanted journey.
Thank you again for all your prayers, cards, meals, donations, and words of encouragement! We cannot begin to describe how blessed we feel from a community of friends, family, and believers in Christ both near and far!
Friday, September 28, 2012
Friday, September 7, 2012
Here we go again
Since I have had the luxury of not being on my chemo pill a few weeks, I now realize how wonderful it was not to feel side effects.......or be constantly reminded that I have leukemia.
Merrick, Arianna, and I went to the Twin Cities last weekend to visit his family. We had such a blast! I made sure to enjoy some treats since I knew I would begin my chemo pill on Monday. Some of the treats were Star Bucks, LeeAnn Chin, cheesecake from the the Cheesecake Factory, and a pedicure. I have to honestly say that there were several times I thought I was "sick free." I would have flashes of thinking maybe it was all just a nightmare, and now I woke up. All that I went through really didn't happen and all that I need to brace myself for my future will never exist. I continued to push the paralyzing fear deeper within me so I could truly enjoy myself. But once Monday morning came around, everything resurfaced once again.
I started my new chemo pill, Sprycel. So far I seem to be ok in the morning. I try to get as much done as I can when I have my energy, including chasing and having fun with my almost two year old baby girl :) But once 2 o'clock rolls around, there is a whole different story. I start to get dizzy, nauseated, my knees and elbows are achy, and I over all just feel exhausted. I am pretty much worthless the rest of the day. As of right now, it feels the same as my previous drug but not as severe. However, my previous drug started out this way also and continued to get worse. I pray that that will not happen with this drug!
Not only are the physical side effects of this drug enough to deal with but the emotions I have been burrying deeper and deeper are resurfacing. The overwhelmingness of this diagnosis and how it effects every part of my life as well as my family's life is almost unbearable! Most of the time all I can pray is a whisper of help. I am so grateful that I serve a God who can hear me through the tears of pain and frustration. And He knows exactly what I need, even when I don't know what to ask for anymore. PRAISE GOD!
**Prayer Requests for This Week**
- Please pray that the side effects will be minimal and my body will adjust and tolerate this drug.
- Please pray for peace and the sense of God's presence among us. I know in my head He is here, I just need to feel His presence as well....especially now!
- Please pray that this new drug will work. I will start having my blood tested again next week. So we will see what my numbers are then.
Thank you for all of your love, prayers, and support!
Merrick, Arianna, and I went to the Twin Cities last weekend to visit his family. We had such a blast! I made sure to enjoy some treats since I knew I would begin my chemo pill on Monday. Some of the treats were Star Bucks, LeeAnn Chin, cheesecake from the the Cheesecake Factory, and a pedicure. I have to honestly say that there were several times I thought I was "sick free." I would have flashes of thinking maybe it was all just a nightmare, and now I woke up. All that I went through really didn't happen and all that I need to brace myself for my future will never exist. I continued to push the paralyzing fear deeper within me so I could truly enjoy myself. But once Monday morning came around, everything resurfaced once again.
I started my new chemo pill, Sprycel. So far I seem to be ok in the morning. I try to get as much done as I can when I have my energy, including chasing and having fun with my almost two year old baby girl :) But once 2 o'clock rolls around, there is a whole different story. I start to get dizzy, nauseated, my knees and elbows are achy, and I over all just feel exhausted. I am pretty much worthless the rest of the day. As of right now, it feels the same as my previous drug but not as severe. However, my previous drug started out this way also and continued to get worse. I pray that that will not happen with this drug!
Not only are the physical side effects of this drug enough to deal with but the emotions I have been burrying deeper and deeper are resurfacing. The overwhelmingness of this diagnosis and how it effects every part of my life as well as my family's life is almost unbearable! Most of the time all I can pray is a whisper of help. I am so grateful that I serve a God who can hear me through the tears of pain and frustration. And He knows exactly what I need, even when I don't know what to ask for anymore. PRAISE GOD!
**Prayer Requests for This Week**
- Please pray that the side effects will be minimal and my body will adjust and tolerate this drug.
- Please pray for peace and the sense of God's presence among us. I know in my head He is here, I just need to feel His presence as well....especially now!
- Please pray that this new drug will work. I will start having my blood tested again next week. So we will see what my numbers are then.
Thank you for all of your love, prayers, and support!
Thursday, August 23, 2012
The Dr. and the Troll
Tuesday morning after Merrick and I left the Dr.'s office, we both agreed that we felt relieved, hopeful, and peaceful. The emotions we were feeling were on the opposite side of the spectrum compared to our last visit. So we decided to go out and celebrate at one of our favorite places to eat, Hu Hot. (Oh so yummy!)
We were able to visit with just the Dr. for over a half hour. We laid everything out on the table and came with a list of questions and concerns for him that we felt NEEDED to be addressed. We were so thankful he thoroughly explained everything to us and took the time to answer all of our questions.
My white blood cell count jumped up to 13,000. Last week it was at 4,000 so right now it is slightly over the normal range. However, my hemoglobin, red blood cell count, and platlet count is all back within normal range: PRAISE GOD! The Dr. was very pleased with my labs this week. He said this is what "normal" looks like. But I asked him how I can be normal if one week my count is 4,000 and the next week it is 13,000. He explained he doesn't look at it that way. He is encouraged by that because it shows him my body is responding to treatment exactly how it should. When I am on the medication, my white count goes down and when I'm off of it my white count spikes back up. I guess it was a new way of looking at things. He also checked my spleen and was unable to feel it so that means it is back in its place.
He also explained new medication. It is called Sprycel. It too is a chemo drug. This drug is designed to only attack the chromozone that is going haywire and producing an excess of white blood cells. Because this drug is so finetoothed, the side effects should be less severe than my last medication. There still is a long unpleasant list of side effects, but my Dr. really has encouraged me that most people on this drug can tolerate them.
With all of that positivity, Merrick and I thought for a moment we were on cloud nine. Until the next part of the visit, which quickly brought us back to the harsh reality of things. Again, since this drug is so finetoothed and the engineering of it is beyond mindboggling, it comes with an extremely high price tag. So after we visited with the Dr. we visited with the patient advocate. She has been the angel behind the scenes searching for foundations to help us with at least the copay of the drug. She has been submitting forms and making phone calls in order to reach some glimmer of hope. Although she has not found a foundation yet, she was honest that it was not going to be easy because of the price tag on this drug. She assured us that she was not going to quit on us but she also wanted us to be fully aware of what we are dealing with and how the future might pan out when it comes to the cost of this drug. So that my friends is the monsterous, ugly troll that is standing in Merrick and I's path. We are desperately trying to stay calm and know that God has control of the situation but what is left of our patience is about as think as a sheet of paper!
**Prayer Requests for this week:**
- I haven't started the new drug yet. It is sitting on our kitchen table and I ignore it every time I walk by. But I know that my life depends on it, so I will start taking it....pretty soon. I'm just not excited to start feeling like crap again. So please pray that the side effects are minimal and my body will tolerate this new drug.
- Please pray for wisdom. For the Dr., for the patient advocate that is diligently working on our case, and for us. Because of the cost of this drug, Merrick and I are faced with some major financial decisions that most people our age wouldn't even think about. We don't want to do anything hasty, but we need to make some decisions that are not going to be fun or easy!
- Please pray that everything will get worked out for the cost of this drug. That there is a foundationout there that would be able to fund our copays at least.
- Please pray for patience. It feels like that is all we can do is sit and wait....at times the silence is deafening and makes us on the verge of going crazy. We have to keep our composer so we don't start to turn on each other!
Thank you so much for your prayers, love, cards, meals, and donations. We are forever grateful for the acts of kindness that have been brought upon us. What an honor and tremendous blessing!
We were able to visit with just the Dr. for over a half hour. We laid everything out on the table and came with a list of questions and concerns for him that we felt NEEDED to be addressed. We were so thankful he thoroughly explained everything to us and took the time to answer all of our questions.
My white blood cell count jumped up to 13,000. Last week it was at 4,000 so right now it is slightly over the normal range. However, my hemoglobin, red blood cell count, and platlet count is all back within normal range: PRAISE GOD! The Dr. was very pleased with my labs this week. He said this is what "normal" looks like. But I asked him how I can be normal if one week my count is 4,000 and the next week it is 13,000. He explained he doesn't look at it that way. He is encouraged by that because it shows him my body is responding to treatment exactly how it should. When I am on the medication, my white count goes down and when I'm off of it my white count spikes back up. I guess it was a new way of looking at things. He also checked my spleen and was unable to feel it so that means it is back in its place.
He also explained new medication. It is called Sprycel. It too is a chemo drug. This drug is designed to only attack the chromozone that is going haywire and producing an excess of white blood cells. Because this drug is so finetoothed, the side effects should be less severe than my last medication. There still is a long unpleasant list of side effects, but my Dr. really has encouraged me that most people on this drug can tolerate them.
With all of that positivity, Merrick and I thought for a moment we were on cloud nine. Until the next part of the visit, which quickly brought us back to the harsh reality of things. Again, since this drug is so finetoothed and the engineering of it is beyond mindboggling, it comes with an extremely high price tag. So after we visited with the Dr. we visited with the patient advocate. She has been the angel behind the scenes searching for foundations to help us with at least the copay of the drug. She has been submitting forms and making phone calls in order to reach some glimmer of hope. Although she has not found a foundation yet, she was honest that it was not going to be easy because of the price tag on this drug. She assured us that she was not going to quit on us but she also wanted us to be fully aware of what we are dealing with and how the future might pan out when it comes to the cost of this drug. So that my friends is the monsterous, ugly troll that is standing in Merrick and I's path. We are desperately trying to stay calm and know that God has control of the situation but what is left of our patience is about as think as a sheet of paper!
**Prayer Requests for this week:**
- I haven't started the new drug yet. It is sitting on our kitchen table and I ignore it every time I walk by. But I know that my life depends on it, so I will start taking it....pretty soon. I'm just not excited to start feeling like crap again. So please pray that the side effects are minimal and my body will tolerate this new drug.
- Please pray for wisdom. For the Dr., for the patient advocate that is diligently working on our case, and for us. Because of the cost of this drug, Merrick and I are faced with some major financial decisions that most people our age wouldn't even think about. We don't want to do anything hasty, but we need to make some decisions that are not going to be fun or easy!
- Please pray that everything will get worked out for the cost of this drug. That there is a foundationout there that would be able to fund our copays at least.
- Please pray for patience. It feels like that is all we can do is sit and wait....at times the silence is deafening and makes us on the verge of going crazy. We have to keep our composer so we don't start to turn on each other!
Thank you so much for your prayers, love, cards, meals, and donations. We are forever grateful for the acts of kindness that have been brought upon us. What an honor and tremendous blessing!
Friday, August 17, 2012
YEAH!!! and Ohh?!?
This past Monday, I had my blood checked again and, praise God, my blood levels are on the rise...slowly. My white blood count was up to 4,700. We also realized that my normal range for white count has changed to 5,000-10,000. So really, I am just under normal range- YEAH!! I was also instructed to continue to stay off of my gleevic, so another "vacation" for my body. YEAH!!
While I was talking to the nurse about my blood levels, she very casually mentioned that the Dr. has ordered me to try another chemo drug and they are waiting to hear from our insurance whether or not it will be approved with our policy. While trying to keep my composer, I informed the nurse that nothing has been said or even hinted to the fact that I am switching to another drug. After a few akward "ohs and ums" and applogies she explained that the Dr. wants me to stop with the gleevic and begin trying sprycell (no idea if that is how you spell it or even say it...all I understood was something like that).
That evening, Merrick did a lot of research on this new drug. It has only been around since 2007 where the gleevic has been around for 10 years. However, the people that commented about the drug stated they began on the gleevic but their bodies could not adapt/ handle the side effects. Once they switched to this drug, they noticed a huge improvement. So that was very encouraging! However, the majority of the side effects are similar to the gleevic ones. I guess time will tell how my body reacts to this drug.
Throughout the rest of this week I have been on the phone and signing and faxing back forms to get the ball rolling to start this new drug. We have been warned that our copay for this new drug is almost double than the gleevic. :*( The foundation that helps with copays for gleevic and possibly this drug denied our claim because I am not on Medicare. :*( The patient advocate from Avera has been an absolute gem and is working very diligently on our case to help us find what we need for financial assistance with this drug. We are very thankful for her, her knowledge, and her connections! But at the same time, once again....Merrick and I are trying extremely hard to stay calm and trust the Lord that something will work out. Just right now things do not look as hopeful as we thought, financially.
This coming Monday I will not have to go in for blood work. On Tuesday, I will be going to the Dr. in Sioux Falls for a check up. I will have blood work done the first hour and then see the Dr. the second hour. Hopefully then, Merrick and I will have things cleared up and thoroughly explained to us for what is going to happen as well as what is going on.
**Prayer requests for this week: **
- Even more peace from our Heavenly Father to calm our anxiousness about this new drug. There are a lot of unknows with this...once again.
- Answers for the financial concerns for this new drug.
- That the Dr. visit will go well. Pray that he will be thorough with his answers. Pray that God will continue to give him wisdom in all that he does.
- Thanksgiving and praise that my white count and the rest of my blood numbers are on the rise and I am starting to feel some of my energy come back!
Thank you again for your prayers, support, and concern!!
While I was talking to the nurse about my blood levels, she very casually mentioned that the Dr. has ordered me to try another chemo drug and they are waiting to hear from our insurance whether or not it will be approved with our policy. While trying to keep my composer, I informed the nurse that nothing has been said or even hinted to the fact that I am switching to another drug. After a few akward "ohs and ums" and applogies she explained that the Dr. wants me to stop with the gleevic and begin trying sprycell (no idea if that is how you spell it or even say it...all I understood was something like that).
That evening, Merrick did a lot of research on this new drug. It has only been around since 2007 where the gleevic has been around for 10 years. However, the people that commented about the drug stated they began on the gleevic but their bodies could not adapt/ handle the side effects. Once they switched to this drug, they noticed a huge improvement. So that was very encouraging! However, the majority of the side effects are similar to the gleevic ones. I guess time will tell how my body reacts to this drug.
Throughout the rest of this week I have been on the phone and signing and faxing back forms to get the ball rolling to start this new drug. We have been warned that our copay for this new drug is almost double than the gleevic. :*( The foundation that helps with copays for gleevic and possibly this drug denied our claim because I am not on Medicare. :*( The patient advocate from Avera has been an absolute gem and is working very diligently on our case to help us find what we need for financial assistance with this drug. We are very thankful for her, her knowledge, and her connections! But at the same time, once again....Merrick and I are trying extremely hard to stay calm and trust the Lord that something will work out. Just right now things do not look as hopeful as we thought, financially.
This coming Monday I will not have to go in for blood work. On Tuesday, I will be going to the Dr. in Sioux Falls for a check up. I will have blood work done the first hour and then see the Dr. the second hour. Hopefully then, Merrick and I will have things cleared up and thoroughly explained to us for what is going to happen as well as what is going on.
**Prayer requests for this week: **
- Even more peace from our Heavenly Father to calm our anxiousness about this new drug. There are a lot of unknows with this...once again.
- Answers for the financial concerns for this new drug.
- That the Dr. visit will go well. Pray that he will be thorough with his answers. Pray that God will continue to give him wisdom in all that he does.
- Thanksgiving and praise that my white count and the rest of my blood numbers are on the rise and I am starting to feel some of my energy come back!
Thank you again for your prayers, support, and concern!!
Wednesday, August 8, 2012
Patience
Hi Everyone,
Now that we have been home for a few weeks and I need to keep my mind busy, I was able to clean up the office and find our computer under stacks of paper and bills. Since things are settling down, Merrick asked if I would be able to start blogging. At first I didn't want to because I don't know what to say. But after much consideration, I feel like I am ready to. So, the blogs will be from me, Tessa. :)
Last week my white blood count was down to 3,000 (normal range in 9,000-11,000) so I was able to be off of my chemo pill (gleevic). After my body got through the withdrawl stage, I started to feel somewhat normal again. I didn't have the constant joint pain, nausea, sleeplessness, etc. I was just extremely tired. So it felt like I was "on vacation" for the week.
This past Monday I had my blood tested again. My white blood count is at a whopping 3,100 again very low. Also my red blood count, hemoglobin, and blood platelets are continuing to drop even further; hence the extreme fatigue. Therefore, the Dr. has instructed me to continue to stay off of the gleevic for another week. So I guess my body gets to be "on vacation" for another week.
Even though I get to be off of gleevic and not have the nasty side effects, my mind is anxious and worried about restarting the gleevic. I was very sick when I started it and I am not looking forward to having go through that all again. I am also very anxious about all the unanswered questions from the Dr. I know where my blood levels are at and what the "normal range" should be and they aren't even close to that. But he has reassured us that those numbers are common and we will see where they are at next week.
For those of you who know me personally, I worry a lot about every day stuff and I get easily anxious...But since July 9, 2012 when my life was completely flipped upside down and shattered, I have felt an incredible amount of peace. I know that that kind of peace can only come from my Heavenly Father. My sister-in-law reminded me of a passage while I was in the hospital and it has been my daily reminder and God's voice speaking directly to me. "Rejoice in the Lord always. I will say it again: Rejoice! Let your gentleness be evident to all. The Lord is near. Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus" (Philippians 4: 4-7). So with that verse as my constant reminder to stay calm, Merrick and I also try to find something to be thankful for each day. We have learned that if we don't, the feelings of anger, hatred and bitterness will quickly consume us. Some days are a lot easier than others. I would say that right now it would be easy... but what lies ahead of us will be anything but easy. Therefore, that is what we are thankful for for right now-I can feel like I was before all....."this" (that's the best word I can think of. There are plenty of others, but probably not the most proper :) )
*Prayer Requests for this week*
- My blood levels will begin to balance out
- My energy level will rise so I can keep up with our almost 2 year old daughter
- Continued peace from our Heavenly Father
- Patience......even though Merrick and I try to focus on the positives and being thankful, we feel like we are starting to loose grip because of all the unknowns. When we both feel like we are slipping, it puts a huge strain on our friendship and our marriage. But we know that we have to be strong for each other and our daughter. This is becoming extremely hard for both of us!
- Keep Satan away from our thoughts. He feeds on our weaknesses and right now Merrick and I are at our most vulnerable than we've ever been. It doesn't take much for him to get at us, and that scares me. I don't want him anywhere near my precious family!
Thank you for your love, support, and prayers. We can't even begin to explain how thankful we are to have so many people in our lives that care about us.
Now that we have been home for a few weeks and I need to keep my mind busy, I was able to clean up the office and find our computer under stacks of paper and bills. Since things are settling down, Merrick asked if I would be able to start blogging. At first I didn't want to because I don't know what to say. But after much consideration, I feel like I am ready to. So, the blogs will be from me, Tessa. :)
Last week my white blood count was down to 3,000 (normal range in 9,000-11,000) so I was able to be off of my chemo pill (gleevic). After my body got through the withdrawl stage, I started to feel somewhat normal again. I didn't have the constant joint pain, nausea, sleeplessness, etc. I was just extremely tired. So it felt like I was "on vacation" for the week.
This past Monday I had my blood tested again. My white blood count is at a whopping 3,100 again very low. Also my red blood count, hemoglobin, and blood platelets are continuing to drop even further; hence the extreme fatigue. Therefore, the Dr. has instructed me to continue to stay off of the gleevic for another week. So I guess my body gets to be "on vacation" for another week.
Even though I get to be off of gleevic and not have the nasty side effects, my mind is anxious and worried about restarting the gleevic. I was very sick when I started it and I am not looking forward to having go through that all again. I am also very anxious about all the unanswered questions from the Dr. I know where my blood levels are at and what the "normal range" should be and they aren't even close to that. But he has reassured us that those numbers are common and we will see where they are at next week.
For those of you who know me personally, I worry a lot about every day stuff and I get easily anxious...But since July 9, 2012 when my life was completely flipped upside down and shattered, I have felt an incredible amount of peace. I know that that kind of peace can only come from my Heavenly Father. My sister-in-law reminded me of a passage while I was in the hospital and it has been my daily reminder and God's voice speaking directly to me. "Rejoice in the Lord always. I will say it again: Rejoice! Let your gentleness be evident to all. The Lord is near. Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus" (Philippians 4: 4-7). So with that verse as my constant reminder to stay calm, Merrick and I also try to find something to be thankful for each day. We have learned that if we don't, the feelings of anger, hatred and bitterness will quickly consume us. Some days are a lot easier than others. I would say that right now it would be easy... but what lies ahead of us will be anything but easy. Therefore, that is what we are thankful for for right now-I can feel like I was before all....."this" (that's the best word I can think of. There are plenty of others, but probably not the most proper :) )
*Prayer Requests for this week*
- My blood levels will begin to balance out
- My energy level will rise so I can keep up with our almost 2 year old daughter
- Continued peace from our Heavenly Father
- Patience......even though Merrick and I try to focus on the positives and being thankful, we feel like we are starting to loose grip because of all the unknowns. When we both feel like we are slipping, it puts a huge strain on our friendship and our marriage. But we know that we have to be strong for each other and our daughter. This is becoming extremely hard for both of us!
- Keep Satan away from our thoughts. He feeds on our weaknesses and right now Merrick and I are at our most vulnerable than we've ever been. It doesn't take much for him to get at us, and that scares me. I don't want him anywhere near my precious family!
Thank you for your love, support, and prayers. We can't even begin to explain how thankful we are to have so many people in our lives that care about us.
Wednesday, July 25, 2012
The Blog Continues
We've had some family and friends reccommend to us to keep posting to the blog since the battle is not yet over. I guess I didn't realize people were still reading it so I apologize we haven't kept it up to date. I'll try to keep posting from now on.
I also had some mention that too much of the previous was very happy and hopeful and they wanted to know if that was all true.... they said to put what we are actually feeling so people know how to pray for us and how they can help.
Honestly, most days it takes all the energy I have to not break down. Tessa hasn't been feeling well since we came home from the hospital. Even though her white blood count is down to normal, her red blood count hasn't been picking up as quickly so she's been a little anemic and therefore really tired and worn.
On top of that, there are the medication side effects. Her knees and joints have been aching so much that it has been hard to walk. Headaches have been worsening as well with a general feeling a nasea and just plain crappy. Her nasea pills don't help with nasea, she can't take tylenol or ibprofen for pain because they could mask a fever which could take her since her immune system is compromised, and she reacts to any type of narcotic pain reliever which includes all the good ones like morphine, codine and we found out last night that she reacts to dilaudid, a supposedly safer morphine based drug.
I think the worst part is that there are no outward signs to any of this. So many people hear chemo pills and they think she'll lose her hair and look horrible. But she doesn't. The Chemo is such a low dose that her hair will stay... its just everything inside hurts. People are quick to say then "well thats not so bad then.. at least not as bad as you thought..." and its a struggle for both Tessa and I because we do feel very thankful for the leukemia being treatable so therefore we shouldn't complain.... it could be worse. But that takes away from the fact that there is still struggle and pain.
Another thing that sucks is still the unkown. The doctor said it could take anywhere from a year to 18 months until we get her body settled with the medication and at the right dosage. For the next while it will be a game of upping and lowering her medication so that it kills off just enough white blood cells but not too much. We were hopeful right away when we found out there was a pill.... now we are preparing ourselves to deal with some crappy side effects for a while. We just hope her body adjusts and she can feel somewhat normal again in time.
With discussing all of this with her doctor, they do say that these are more extreme side effects of the pill and we might have to discuss taking a different kind. However there are only 2 other kinds to try and with each step we lose footing with our tug-0-war for Tessa's health and life. The other two are also more experimental yet and have side effects of their own. For now then, we wait, see how things go and hopefully her body will adjust. We ask for prayers that her body will accept the medication and be able to handle it.
Last night was a reminder of all of this as we went to the pipestone ER. She spiked a fever of 101 so we had to go in so that they could test and see what was up. It was hard for me to be patient with the ER doctor as he was oblivious to the fact she had leukemia and that her immune system was compromised--even after we told him. After they told us they were going to send us home with some pain meds for her knees. They said she doesn't have an infection since her white blood count was normal.... DUH! She's taking pills that kill off her white blood cells, thats why we needed to come in. It was after explaining this the 3rd time he finally called the sioux falls oncology clinic where they ordered more tests and got her on an antibiotic right away.
I think it goes back to the fact that everything looks ok from the outside. They couldn't tell she had Leukemia and didn't understand her type of leukemia. She just looked like she was in pain.
I'm a manager of a farm/hardware retail store. I've been very thankful for my employees during this time. If it wasn't for them I'd probably go insane. Everyday at work my mind is all fuzz, I can't focus on anythign when I'm the one that usually gets everyone else focused to the tasks at hand. And then people ask how I'm doing..... I never realized until now how loaded of a question it is and how much people can't stand when you don't answer "good," or "ok". The worst is when people try and encourage you. I try and remember that at one point I did the same thing... I didn't understand.
I remember back to a past blog where I talked about joining a family of people somehow deeply touched by cancer or another illness... one that took much fight and the possibility of losing a loved one. I can tell who belongs to that family whether they ask me the question of "how are you doing"? or if they just come up with watery eyes and just give me a hug saying "i know" or "we will never know why but our prayers are with you.
I write all of this because I wish someone would have told me before when I was naive. Never ask someone "how are you?" when you know they are struggling with an illness or deep emotional pain. The best way to show your concern and love is physical affection of some sort... even just a squeeze of the hand or a half hug.... For some reason, physcial connection with another human being reminds the person they are not alone and that others love them and are thinking of them. Its one of the ways in which actions speak much larger than any words could say.
...................
So thats the update. We're gearing up for a long road of general crap and pain. But yet we're thankful every day that Tessa is here. This is the meaning of bittersweet, something that is hard to deal with but thankful your still dealing with it; the alternative is death..... And that too is always on my mind and worries me continually. painful thoughts of her not being here anymore......
...................
prayer requests:
that Tessa's body will accept the Gleevic and the pain and nasea will subside.
that we don't lose our faith in the road ahead as little things every day wear away at our spirits
most of all that Tessa can find some relief for the pain and be able to sleep, that will help alot
thank you everyone for the thoughts, prayers, and cards. At times like these it helps us so much to know how loved and cared for we are and that we belong so such a large family of friends and family of christian brothers and sister who are in constant prayer for us.
Merrick
I also had some mention that too much of the previous was very happy and hopeful and they wanted to know if that was all true.... they said to put what we are actually feeling so people know how to pray for us and how they can help.
Honestly, most days it takes all the energy I have to not break down. Tessa hasn't been feeling well since we came home from the hospital. Even though her white blood count is down to normal, her red blood count hasn't been picking up as quickly so she's been a little anemic and therefore really tired and worn.
On top of that, there are the medication side effects. Her knees and joints have been aching so much that it has been hard to walk. Headaches have been worsening as well with a general feeling a nasea and just plain crappy. Her nasea pills don't help with nasea, she can't take tylenol or ibprofen for pain because they could mask a fever which could take her since her immune system is compromised, and she reacts to any type of narcotic pain reliever which includes all the good ones like morphine, codine and we found out last night that she reacts to dilaudid, a supposedly safer morphine based drug.
I think the worst part is that there are no outward signs to any of this. So many people hear chemo pills and they think she'll lose her hair and look horrible. But she doesn't. The Chemo is such a low dose that her hair will stay... its just everything inside hurts. People are quick to say then "well thats not so bad then.. at least not as bad as you thought..." and its a struggle for both Tessa and I because we do feel very thankful for the leukemia being treatable so therefore we shouldn't complain.... it could be worse. But that takes away from the fact that there is still struggle and pain.
Another thing that sucks is still the unkown. The doctor said it could take anywhere from a year to 18 months until we get her body settled with the medication and at the right dosage. For the next while it will be a game of upping and lowering her medication so that it kills off just enough white blood cells but not too much. We were hopeful right away when we found out there was a pill.... now we are preparing ourselves to deal with some crappy side effects for a while. We just hope her body adjusts and she can feel somewhat normal again in time.
With discussing all of this with her doctor, they do say that these are more extreme side effects of the pill and we might have to discuss taking a different kind. However there are only 2 other kinds to try and with each step we lose footing with our tug-0-war for Tessa's health and life. The other two are also more experimental yet and have side effects of their own. For now then, we wait, see how things go and hopefully her body will adjust. We ask for prayers that her body will accept the medication and be able to handle it.
Last night was a reminder of all of this as we went to the pipestone ER. She spiked a fever of 101 so we had to go in so that they could test and see what was up. It was hard for me to be patient with the ER doctor as he was oblivious to the fact she had leukemia and that her immune system was compromised--even after we told him. After they told us they were going to send us home with some pain meds for her knees. They said she doesn't have an infection since her white blood count was normal.... DUH! She's taking pills that kill off her white blood cells, thats why we needed to come in. It was after explaining this the 3rd time he finally called the sioux falls oncology clinic where they ordered more tests and got her on an antibiotic right away.
I think it goes back to the fact that everything looks ok from the outside. They couldn't tell she had Leukemia and didn't understand her type of leukemia. She just looked like she was in pain.
I'm a manager of a farm/hardware retail store. I've been very thankful for my employees during this time. If it wasn't for them I'd probably go insane. Everyday at work my mind is all fuzz, I can't focus on anythign when I'm the one that usually gets everyone else focused to the tasks at hand. And then people ask how I'm doing..... I never realized until now how loaded of a question it is and how much people can't stand when you don't answer "good," or "ok". The worst is when people try and encourage you. I try and remember that at one point I did the same thing... I didn't understand.
I remember back to a past blog where I talked about joining a family of people somehow deeply touched by cancer or another illness... one that took much fight and the possibility of losing a loved one. I can tell who belongs to that family whether they ask me the question of "how are you doing"? or if they just come up with watery eyes and just give me a hug saying "i know" or "we will never know why but our prayers are with you.
I write all of this because I wish someone would have told me before when I was naive. Never ask someone "how are you?" when you know they are struggling with an illness or deep emotional pain. The best way to show your concern and love is physical affection of some sort... even just a squeeze of the hand or a half hug.... For some reason, physcial connection with another human being reminds the person they are not alone and that others love them and are thinking of them. Its one of the ways in which actions speak much larger than any words could say.
...................
So thats the update. We're gearing up for a long road of general crap and pain. But yet we're thankful every day that Tessa is here. This is the meaning of bittersweet, something that is hard to deal with but thankful your still dealing with it; the alternative is death..... And that too is always on my mind and worries me continually. painful thoughts of her not being here anymore......
...................
prayer requests:
that Tessa's body will accept the Gleevic and the pain and nasea will subside.
that we don't lose our faith in the road ahead as little things every day wear away at our spirits
most of all that Tessa can find some relief for the pain and be able to sleep, that will help alot
thank you everyone for the thoughts, prayers, and cards. At times like these it helps us so much to know how loved and cared for we are and that we belong so such a large family of friends and family of christian brothers and sister who are in constant prayer for us.
Merrick
Monday, July 16, 2012
Day 7: Heading Home!
I'm glad I was able to get my butt out of bed this morning on time. Doc was in right away at 7:35 this morning to check on her.
She'll get her neck blood cathedar out in just a bit, nice shower, and I'm taking her to cinnabon. (only thing she's craving this morning).
White blood count is down to 30,000, by the end of the day should be 20,000 and then tommorow 10,000. This week will be some trips to pipestone for blood tests to monitor her white blood cells. Then like I've put before, we'll just monitor everything the next few months until we get her dosage at the correct amount.
Then once we reach the 18 month mark, everyrthing should be clear.
She doesn't have any restrictions (which we're thankful for) and everything should be ok.
She wanted to let everyone know as well that she'll be at Gord and Judy's for the week until she gets some of her strength back to tackle Arianna on her own. Gord and Judy told me as well that their house is open to anyone who would want to come and visit so don't be afraid to come and say hi. She doesn't have to worry as much now about people who are sick.... we'll just make sure to sanitize your hands before you get too far in the door :)
Thank you again to all for the prayers and support. We now start the Journey at home for the next chapter of our lives. Tessa is here, Arianna is more precious than ever, and I have my family. Life couldn't be better.
This is the last post--yeah!
She'll get her neck blood cathedar out in just a bit, nice shower, and I'm taking her to cinnabon. (only thing she's craving this morning).
White blood count is down to 30,000, by the end of the day should be 20,000 and then tommorow 10,000. This week will be some trips to pipestone for blood tests to monitor her white blood cells. Then like I've put before, we'll just monitor everything the next few months until we get her dosage at the correct amount.
Then once we reach the 18 month mark, everyrthing should be clear.
She doesn't have any restrictions (which we're thankful for) and everything should be ok.
She wanted to let everyone know as well that she'll be at Gord and Judy's for the week until she gets some of her strength back to tackle Arianna on her own. Gord and Judy told me as well that their house is open to anyone who would want to come and visit so don't be afraid to come and say hi. She doesn't have to worry as much now about people who are sick.... we'll just make sure to sanitize your hands before you get too far in the door :)
Thank you again to all for the prayers and support. We now start the Journey at home for the next chapter of our lives. Tessa is here, Arianna is more precious than ever, and I have my family. Life couldn't be better.
This is the last post--yeah!
Sunday, July 15, 2012
Day 6: Good night rest; it all sinks in
I went home yesterday to take care of Arianna for the afternoon. Then took her to see Mom for a few hours at the hospital and she cheared her up as always. We're so blessed to have such a good kid who takes every day as a new way to have fun. She's just at the right age to be happily oblivious going back and forth and staying at Grandpa and Grandma's.
Last night Tessa slept really well. They finally gave her some good medication to help the nasea and inability to sleep. However, waking up refreshed for once it all kinda finally sank in and hit her emotionally hard. Just in time for me to sleep through my alarm since I finally had a night at home. I really do thank God every day for we have this one nurse working; she's been the biggest support for Tessa. She was hear this morning in my absense and cried with her.
I was angry for alot of the morning when I first woke up. It was only during my drive to the hospital I realized the anger was actually immense sadness trying to break through. I cried alot this morning after that.
Also, now that her white blood cell count is lessening by the thousands, they can finally get an accurate measure on her red blood cell count which is quite low. In a way it was good news because it helps explains why she's been so tired. We always thought it was just because Arainna started walking.... and never stopped that we thought she was tired but there was actually a medical reason.
The only thing is that she might need a blood transfusion, which would give us another day at the hospital. We'll find out more tommorow morning when our regular doctor comes back and reviews her case. Hopefully we can both go home tommorow if not tuesday.
I've heard now we've had prayer chains going for us from coast to coast and at least a dozen different churches from family and friends far and wide. Tessa and I have talked too about how we've felt them too. It at times like this that change a person forever. To be the reciever of such prayer and support; its humbling.
Worldview is something we learned alot about in school and especially at Dordt; the point at which each person sees and percieves the world. It's shaped by all sorts of things: personal characteristics, experiences, family heritage, along with the broad and specific culture in which one is brought up. However, I really do think its at moments like these our worldview changes forever. Life will be different from now on. We've gone from the possibility of losing Tessa, to saving her, to losing our future ability to have children. Life will never be the same again. My perspective on life will never be the same again.
I'm finding we now belong to a very broad community of those who have been touched deeply by cancer in one way or another. I'm hearing stories daily of people at home embracing Gord and Judy.... not saying a word but understanding the struggle and pain with a simple squeeze and a few tears.
Tonight we were visited by members of our home church who struggled a long time with their own daughter's bout of Leukemia. It was humbling and reassuring. We talked about many of the same emotions and feelings; fears that strike deep into the soul when love is so strongly attached to another human being. We talked too about the importance of support and even the christian community to which we belong too. At times, edgerton can seem suffocatingly small and tight. People too often seem so stuck in their ways or hard headed with their opinions. But when rough times come, its amazing to see how many of those hard heads bow gently as they raise they're prayers to our Sovereign God. Its been amazing to hear about how many have stopped our loves ones to check on Tessa and see how's she doing.
We are forever changed. Life has new meaning. We know there are many bumps in the road to come and hard turns as we go along. But there is still a road; and we are still driving through it together. That means something.
Anyone who is reading this, please hug each member of your family very hard. Hold them close.
Last night Tessa slept really well. They finally gave her some good medication to help the nasea and inability to sleep. However, waking up refreshed for once it all kinda finally sank in and hit her emotionally hard. Just in time for me to sleep through my alarm since I finally had a night at home. I really do thank God every day for we have this one nurse working; she's been the biggest support for Tessa. She was hear this morning in my absense and cried with her.
I was angry for alot of the morning when I first woke up. It was only during my drive to the hospital I realized the anger was actually immense sadness trying to break through. I cried alot this morning after that.
Physical update:
overall doing better with actual sleep. Her white blood count was down to 70,000 today. They decided not to do her dialasys type treatment today. I guess after 5 days the chemo pills really start to kick in and do their job--espcially the specific chemothereapy drug for her particular Leukemia. They didn't want to pull too much out right away so for today we're letting the pills do the work.Also, now that her white blood cell count is lessening by the thousands, they can finally get an accurate measure on her red blood cell count which is quite low. In a way it was good news because it helps explains why she's been so tired. We always thought it was just because Arainna started walking.... and never stopped that we thought she was tired but there was actually a medical reason.
The only thing is that she might need a blood transfusion, which would give us another day at the hospital. We'll find out more tommorow morning when our regular doctor comes back and reviews her case. Hopefully we can both go home tommorow if not tuesday.
Support
We had some good visits again with family this afternoon and tonight. Its been such a blessing to have the family come together, especially all of Tessa's older brothers being so worried for their little sister.I've heard now we've had prayer chains going for us from coast to coast and at least a dozen different churches from family and friends far and wide. Tessa and I have talked too about how we've felt them too. It at times like this that change a person forever. To be the reciever of such prayer and support; its humbling.
Worldview is something we learned alot about in school and especially at Dordt; the point at which each person sees and percieves the world. It's shaped by all sorts of things: personal characteristics, experiences, family heritage, along with the broad and specific culture in which one is brought up. However, I really do think its at moments like these our worldview changes forever. Life will be different from now on. We've gone from the possibility of losing Tessa, to saving her, to losing our future ability to have children. Life will never be the same again. My perspective on life will never be the same again.
I'm finding we now belong to a very broad community of those who have been touched deeply by cancer in one way or another. I'm hearing stories daily of people at home embracing Gord and Judy.... not saying a word but understanding the struggle and pain with a simple squeeze and a few tears.
Tonight we were visited by members of our home church who struggled a long time with their own daughter's bout of Leukemia. It was humbling and reassuring. We talked about many of the same emotions and feelings; fears that strike deep into the soul when love is so strongly attached to another human being. We talked too about the importance of support and even the christian community to which we belong too. At times, edgerton can seem suffocatingly small and tight. People too often seem so stuck in their ways or hard headed with their opinions. But when rough times come, its amazing to see how many of those hard heads bow gently as they raise they're prayers to our Sovereign God. Its been amazing to hear about how many have stopped our loves ones to check on Tessa and see how's she doing.
We are forever changed. Life has new meaning. We know there are many bumps in the road to come and hard turns as we go along. But there is still a road; and we are still driving through it together. That means something.
Anyone who is reading this, please hug each member of your family very hard. Hold them close.
Friday, July 13, 2012
Day 4: Diagnosis
Diagnosis is what they thought. Dr. Vinod came in and explained it is CML based upon the results of the bone marrow biopsy.
He also said to plan to be here over the weekend and we'll see him monday morning since its taking a little longer to get her white count down. ugh.
I guess they are not going to switch from the chemo to the specific drug for her Leukemia, they will be adding it to her regime to get it all worked down.
Now we are asking for prayers that her body accepts the specific drug for her Leukemia as sometimes people do not all respond to it. It would be best if this pill worked otherwise they'll have to go to pill #2 and #3 which are more experimental and not as safe as pill #1. So, prayers now that her body will accept it and she can then just stay on it for the rest of her life and keep the cancer cells at bay.
until later,
Merrick
He also said to plan to be here over the weekend and we'll see him monday morning since its taking a little longer to get her white count down. ugh.
I guess they are not going to switch from the chemo to the specific drug for her Leukemia, they will be adding it to her regime to get it all worked down.
Now we are asking for prayers that her body accepts the specific drug for her Leukemia as sometimes people do not all respond to it. It would be best if this pill worked otherwise they'll have to go to pill #2 and #3 which are more experimental and not as safe as pill #1. So, prayers now that her body will accept it and she can then just stay on it for the rest of her life and keep the cancer cells at bay.
until later,
Merrick
Day 4: I thought sleep was the best medicine?
Tessa didn't get as much sleep last night again. With the double dose of chemo pills she has alot of extra dead cells breaking down in her body creating extra urea so of course she's peeing more which distrubs everything because she's plugged into a machine thats plugged into a wall. Nurses also have to check her vitals every 4 hours.
At least last night she didn't have to deal with me snoring. I stayed at family in sioux falls here which was helpful. (plus I'm in a much better mood today so hopefully I won't bite at the nurses as bad who pull and poke too much).
White blood cell count is only down to 123,000. Still getting lower but not as fast as they had hoped--even with the doubling of the chemotherapy pills. Looks like we might not go home yet until sunday, maybe even monday.
I'll update more when we see Dr. Vinod. He's tried a few times this morning but we were in the middle of getting ready or trying to get the water out of her dressing on her shoulder after the shower so we'll see him hopefully within the hour in which we'll learn more about how its all going.
Thats about it for now. I'll update after we see the doctor--if there is anything new to report.
I keep reminding Tessa she kept saying all summer that me and her just need to get away for a bit. I guess this is sorta what she wanted. We've been relaxing in the afternoons and watched Kung Fu Panda 2 yesterday. It was neat to watch, we didn't know it but at the end the movie was actually all about Po finding his original family after finding out he was adopted....
At least last night she didn't have to deal with me snoring. I stayed at family in sioux falls here which was helpful. (plus I'm in a much better mood today so hopefully I won't bite at the nurses as bad who pull and poke too much).
White blood cell count is only down to 123,000. Still getting lower but not as fast as they had hoped--even with the doubling of the chemotherapy pills. Looks like we might not go home yet until sunday, maybe even monday.
I'll update more when we see Dr. Vinod. He's tried a few times this morning but we were in the middle of getting ready or trying to get the water out of her dressing on her shoulder after the shower so we'll see him hopefully within the hour in which we'll learn more about how its all going.
Thats about it for now. I'll update after we see the doctor--if there is anything new to report.
I keep reminding Tessa she kept saying all summer that me and her just need to get away for a bit. I guess this is sorta what she wanted. We've been relaxing in the afternoons and watched Kung Fu Panda 2 yesterday. It was neat to watch, we didn't know it but at the end the movie was actually all about Po finding his original family after finding out he was adopted....
Thursday, July 12, 2012
Day 3: Treatment update
Now back to the treatment.
After the first treatement where they pull out the white blood cells from her blood, her white blood cell count went down from 279,000 to about 179,000. After her second though she only went down to 159,000. They said sometimes after the initial pull the cells start to stick and are more difficult to pull out and separate manually.
Also due to this they are doubling her cheomotherapy medication from once to twice a day. Again, the chemothereapy is just a small pillform where she doesn't have any side effect since its so small. They are also doing the chemo first until they can get the actual diagnosis for CML. Only once diagnosed can she get the actual treatment which will attack the specific wild chromosome that has her white blood cell factory going full-bore.
Tessa is in good spirits. My family pitched in and got her a Kindle Fire and with the Wi-Fi in the hospital it helps just looking through pintrest and passing the time on facebook and such. Cafeteria food is getting old fast. The Dordt Commons food actually looks pretty good now in comparison :) but we've been sneaking some burger king and HyVee chinese :)
Talking with Dr. Vinod (her hemotologist), he believes by friday we should get the results from the bone marrow biopsy and get her the diagnosis. From there hopefully her white blood cell count will go down enough so that she can go home saturday with the prescription and everything else will be just checkups in pipestone and visits to sioux falls only once every three months.
Thats about it. We're sitting through her blood separation treatement right now. a little dinner and a little rest and the rest of the day is open. Heard from a few more people planning to visit so its keeping our spirits up more. With more visitors I might just peel out for a bit. I never want Tessa to be a lone in this but I have to admit I'm getting stir crazy at the hospital. Especially being a Mr. Fixit control freak who cant control or fix anything thats going on.
I think this will be it for updates today. I'll probably write more again from 11-12 tommorow during this treatment again.
God's blessings on all of you. Truly I understand now more than ever what it means to belong to a community of believers and living in communion with the saints with all the prayers, love, and support we've recieved. You never fully understand or appreciate it until you yourself are sitting in the hospital recieving it all. We are truly blessed.
After the first treatement where they pull out the white blood cells from her blood, her white blood cell count went down from 279,000 to about 179,000. After her second though she only went down to 159,000. They said sometimes after the initial pull the cells start to stick and are more difficult to pull out and separate manually.
Also due to this they are doubling her cheomotherapy medication from once to twice a day. Again, the chemothereapy is just a small pillform where she doesn't have any side effect since its so small. They are also doing the chemo first until they can get the actual diagnosis for CML. Only once diagnosed can she get the actual treatment which will attack the specific wild chromosome that has her white blood cell factory going full-bore.
Tessa is in good spirits. My family pitched in and got her a Kindle Fire and with the Wi-Fi in the hospital it helps just looking through pintrest and passing the time on facebook and such. Cafeteria food is getting old fast. The Dordt Commons food actually looks pretty good now in comparison :) but we've been sneaking some burger king and HyVee chinese :)
Talking with Dr. Vinod (her hemotologist), he believes by friday we should get the results from the bone marrow biopsy and get her the diagnosis. From there hopefully her white blood cell count will go down enough so that she can go home saturday with the prescription and everything else will be just checkups in pipestone and visits to sioux falls only once every three months.
Thats about it. We're sitting through her blood separation treatement right now. a little dinner and a little rest and the rest of the day is open. Heard from a few more people planning to visit so its keeping our spirits up more. With more visitors I might just peel out for a bit. I never want Tessa to be a lone in this but I have to admit I'm getting stir crazy at the hospital. Especially being a Mr. Fixit control freak who cant control or fix anything thats going on.
I think this will be it for updates today. I'll probably write more again from 11-12 tommorow during this treatment again.
God's blessings on all of you. Truly I understand now more than ever what it means to belong to a community of believers and living in communion with the saints with all the prayers, love, and support we've recieved. You never fully understand or appreciate it until you yourself are sitting in the hospital recieving it all. We are truly blessed.
Day 3: The Decision
There is something I've been holding back from the public for some time now. After the initial shock of hearing cancer and leukemia, finding out Tessa will live and should live a long normal life with the specific medication for her specific leukemia, we were hit with a blow that was much harder to deal with. Its only been after we finalized the decision yesterday and started the chemo treatment has Tessa been ok to share this with others.
One of the side effects of the low dose chemotherapy and the long term taking of the medication for this type leukemia is that Tessa will not be able to have children anymore due to the toxicity of the medication for the baby. It is possible that if she did get pregnant she could stop the medication. But stopping the medication could bring the Leukemia back stronger than ever--where the medication would not be able to stop it anymore.
Either decision would then be harmful for Tessa or harmful for Baby. The only thing safe for Baby and Mom would be if we chose (within 24 hours) to have a surrogate mother at a future date and freeze some developed embryos. Tessa was already at a dangerous level with white blood cell count so they would have to extract the eggs immediately before she started taking the chemotherapy.
When we first heard this we have to admit it was devestating. We thought we were through the worst finding out Tessa was going to live and not die. But now we had to decide on the possibility of having any more children of our own. In a way, it was the death of growing our family naturally. Having children with Tessa's smile or my goofy humor......
We did consider the invitro. We even had someone close offer to be the surrogate. But when talking with the fertility doctor 2 days ago, in all there seemed to be just so many costs and risks. Not to mention we had moral issues with having developed embryos out there either frozen or later being "thrown away" or used for research. Those would be our children. Overall, it felt the whole process was just bucking the system that God had made to be natural. Of course if we didn't already have Arianna, we would have considered it more. For so many others I would not stop them from trying it. It really is something to have a child that carries a bit of you and a bit of your spouse---its awe inspiring actually.
And then we also rembered this past April Tessa became obsessed about Adoption after a Casting Crowns concert and she visited a booth and got some more information. We both knew even in high school that adoption would be somewhere in our future for we both believe there are so many children out there who need a good home. But after the concert, I honestly have to say I was getting annoyed by how Tessa wouldn't drop it. Every night she wanted to talk about it and get a budget set up---I pushed it off saying not until later in the future when we get other things settled first.
And then 3 months later all of this happened.... Thats not just a coincidence. Through this we know God has been preparing our hearts for this decision. We realize now more than ever that there are children out there who need us and whom God is preparing for us.
Tearfully and bitterly we accepted this truth and made the decision to continue treatement without harvesting eggs. I'm also going to get fixed so that there is no possible chance of getting pregnant because of all the risks to both Mom and possible baby.
Its still hard to take and think about. Even now I'm almost in tears writing it down. But at the same time there is a peace that comes from only from God knowing that this was all part of His plan. We know now more than ever that our children are no longer coming from us--they are out there and we have to find them. Our family is incomplete and our children are "out there".
The reason we wanted to post this is so that people also pray for us emotionally in this time of loss. I hope people understand too in the coming months while I decommit myself from differing obligations until a future time. I've almost lost my wife and now Arianna is more precious than before. I'm not going to miss a minute more with them if I don't have to.
One of the side effects of the low dose chemotherapy and the long term taking of the medication for this type leukemia is that Tessa will not be able to have children anymore due to the toxicity of the medication for the baby. It is possible that if she did get pregnant she could stop the medication. But stopping the medication could bring the Leukemia back stronger than ever--where the medication would not be able to stop it anymore.
Either decision would then be harmful for Tessa or harmful for Baby. The only thing safe for Baby and Mom would be if we chose (within 24 hours) to have a surrogate mother at a future date and freeze some developed embryos. Tessa was already at a dangerous level with white blood cell count so they would have to extract the eggs immediately before she started taking the chemotherapy.
When we first heard this we have to admit it was devestating. We thought we were through the worst finding out Tessa was going to live and not die. But now we had to decide on the possibility of having any more children of our own. In a way, it was the death of growing our family naturally. Having children with Tessa's smile or my goofy humor......
We did consider the invitro. We even had someone close offer to be the surrogate. But when talking with the fertility doctor 2 days ago, in all there seemed to be just so many costs and risks. Not to mention we had moral issues with having developed embryos out there either frozen or later being "thrown away" or used for research. Those would be our children. Overall, it felt the whole process was just bucking the system that God had made to be natural. Of course if we didn't already have Arianna, we would have considered it more. For so many others I would not stop them from trying it. It really is something to have a child that carries a bit of you and a bit of your spouse---its awe inspiring actually.
And then we also rembered this past April Tessa became obsessed about Adoption after a Casting Crowns concert and she visited a booth and got some more information. We both knew even in high school that adoption would be somewhere in our future for we both believe there are so many children out there who need a good home. But after the concert, I honestly have to say I was getting annoyed by how Tessa wouldn't drop it. Every night she wanted to talk about it and get a budget set up---I pushed it off saying not until later in the future when we get other things settled first.
And then 3 months later all of this happened.... Thats not just a coincidence. Through this we know God has been preparing our hearts for this decision. We realize now more than ever that there are children out there who need us and whom God is preparing for us.
Tearfully and bitterly we accepted this truth and made the decision to continue treatement without harvesting eggs. I'm also going to get fixed so that there is no possible chance of getting pregnant because of all the risks to both Mom and possible baby.
Its still hard to take and think about. Even now I'm almost in tears writing it down. But at the same time there is a peace that comes from only from God knowing that this was all part of His plan. We know now more than ever that our children are no longer coming from us--they are out there and we have to find them. Our family is incomplete and our children are "out there".
The reason we wanted to post this is so that people also pray for us emotionally in this time of loss. I hope people understand too in the coming months while I decommit myself from differing obligations until a future time. I've almost lost my wife and now Arianna is more precious than before. I'm not going to miss a minute more with them if I don't have to.
Day 2 Review
Day 2 quick overview: yesterday wasn't anything new. It was a rough night sleeping. We have a room very well located by the food room, nurses station, and the main doors to get into our wing..... I hope you can read the sarcasm because we hear everything.
I bought a small loud fan at least and that helps, especially just blowing some air into my corner by the window where I'm camping at but of course I sleep on my back and during the night I've been getting phone calls from tessa to stop snoring. This all happened again last night even with the nurses trying better to leave us be but of course they have to get her stats every 4 hours and weigh her every day before 6am. I thought sleep was supposed to be the best medicine but obviously not very important in a hospital. I'm done complaining now. I just haven't gotten a lot of sleep either.....
Otherwise she had her iasis (sp?) (the treatment where they hook her blood up to a machine and it pulls out all the excess white blood cells and puts it back into her body cleaner). It went well. Found out today it didn't pull as much white blood cells out as the first day but they said that was to be expected. I guess white blood cells start to get a little sticky and don't separate as well after the firt run.
In the afternoon we had alot of visitors again. It was good to see and talk with everyone as the more familiar faces come the more it doesn't seem like we are in a hospital dealing with cancer. Later in the afternoon as more people came I split out for a little bit to go home and shower and get some more clothes. I came back to find Tessa sitting with family on the deck by the childrens ward. Arianna and some nephews were playing with the playhouse and a go around car. It was great just to play with Arianna for a bit. We are very very thankful she is at the age where she doesn't rely on mom for everything but still isn't old enough to quite comprehend everything. She's just having a good vacation with Grandma and Grandpa. We're also thankful too she is as independent as her father and gives kisses and waves goodby without fussing.
thanks to everyone even for just a quick post on facebook or a quick text to my or tessa's phone. Every bit of encouragement is heartwarming as we have felt more love and family and friends connection the past few days than we ever thought possible.
I bought a small loud fan at least and that helps, especially just blowing some air into my corner by the window where I'm camping at but of course I sleep on my back and during the night I've been getting phone calls from tessa to stop snoring. This all happened again last night even with the nurses trying better to leave us be but of course they have to get her stats every 4 hours and weigh her every day before 6am. I thought sleep was supposed to be the best medicine but obviously not very important in a hospital. I'm done complaining now. I just haven't gotten a lot of sleep either.....
Otherwise she had her iasis (sp?) (the treatment where they hook her blood up to a machine and it pulls out all the excess white blood cells and puts it back into her body cleaner). It went well. Found out today it didn't pull as much white blood cells out as the first day but they said that was to be expected. I guess white blood cells start to get a little sticky and don't separate as well after the firt run.
In the afternoon we had alot of visitors again. It was good to see and talk with everyone as the more familiar faces come the more it doesn't seem like we are in a hospital dealing with cancer. Later in the afternoon as more people came I split out for a little bit to go home and shower and get some more clothes. I came back to find Tessa sitting with family on the deck by the childrens ward. Arianna and some nephews were playing with the playhouse and a go around car. It was great just to play with Arianna for a bit. We are very very thankful she is at the age where she doesn't rely on mom for everything but still isn't old enough to quite comprehend everything. She's just having a good vacation with Grandma and Grandpa. We're also thankful too she is as independent as her father and gives kisses and waves goodby without fussing.
thanks to everyone even for just a quick post on facebook or a quick text to my or tessa's phone. Every bit of encouragement is heartwarming as we have felt more love and family and friends connection the past few days than we ever thought possible.
Wednesday, July 11, 2012
A song
tessa wanted me to post a song she's holding dear to her heart right now. Recent one from Casting Crowns off their latest album. It has a whole new meaning for us now as we have seen God preparing us for this time in our lives once we sit and look back a bit.
He brought us home 2 christmases ago to edgerton with my move to the Pipestone Bomgaars store. 2 easters ago we now see the first signs of this came up when tessa had a bad infection but her white blood count was over elevated (we just figured it was due to the viral infection). Without the family and friends surrounding us here we're not sure how this would have went. We didn't really even trust the Onawa, IA hospital well so Tessa has admitted she probably wouldn't have gone in to check out the lump in her stomach. Theres even more that we cannot share with public right now just how much God has been with us preparing us for this exact time.
I want to thank again everyone whose stopped by. Especially for all the prayers, both public and private.
Artist: Casiting Crowns
Song: Already There
From where I'm standing
Lord it's so hard for me to see
Where this is going
And where You're leading me
I wish I knew how
All my fears and all my questions
Are gonna play out
In a world I can't control
Oh, oh
When I'm lost in the mystery
To You my future is a memory
Cause You're already there
You're already there
Standing at the end of my life
Waiting on the other side
And You're already there
You're already there
Oh, oh, oh, oh
From where You're standing
Lord, You see a grand design
That You imagined
When You breathed me into life
And all the chaos
Comes together in Your hands
Like a masterpiece
Of Your picture perfect plan
When I'm lost in the mystery
To You my future is a memory
Cause You're already there
You're already there
Standing at the end of my life
Waiting on the other side
And You're already there
You're already there
One day I'll stand before You
And look back on the life I've lived
I can't wait to enjoy the view
And see how all the pieces fit (x2)
One day I'll stand before You
And look back on the life I've lived
Cause You're already there
You're already there
When I'm lost in the mystery
To You my future is a memory
Cause You're already there
You're already there
Standing at the end of my life
Waiting on the other side
And You're already there
You're already there
You are already there
He brought us home 2 christmases ago to edgerton with my move to the Pipestone Bomgaars store. 2 easters ago we now see the first signs of this came up when tessa had a bad infection but her white blood count was over elevated (we just figured it was due to the viral infection). Without the family and friends surrounding us here we're not sure how this would have went. We didn't really even trust the Onawa, IA hospital well so Tessa has admitted she probably wouldn't have gone in to check out the lump in her stomach. Theres even more that we cannot share with public right now just how much God has been with us preparing us for this exact time.
I want to thank again everyone whose stopped by. Especially for all the prayers, both public and private.
Artist: Casiting Crowns
Song: Already There
From where I'm standing
Lord it's so hard for me to see
Where this is going
And where You're leading me
I wish I knew how
All my fears and all my questions
Are gonna play out
In a world I can't control
Oh, oh
When I'm lost in the mystery
To You my future is a memory
Cause You're already there
You're already there
Standing at the end of my life
Waiting on the other side
And You're already there
You're already there
Oh, oh, oh, oh
From where You're standing
Lord, You see a grand design
That You imagined
When You breathed me into life
And all the chaos
Comes together in Your hands
Like a masterpiece
Of Your picture perfect plan
When I'm lost in the mystery
To You my future is a memory
Cause You're already there
You're already there
Standing at the end of my life
Waiting on the other side
And You're already there
You're already there
One day I'll stand before You
And look back on the life I've lived
I can't wait to enjoy the view
And see how all the pieces fit (x2)
One day I'll stand before You
And look back on the life I've lived
Cause You're already there
You're already there
When I'm lost in the mystery
To You my future is a memory
Cause You're already there
You're already there
Standing at the end of my life
Waiting on the other side
And You're already there
You're already there
You are already there
The Email
Yesterday I wrote and email to close family and friends just to help keep things straight. It was right after the doctors appointment while she was getting the bone marrow biopsy and I had some time to sort some thoughts. I was told it was good and detailed so I'll just copy it below. It summarizes about everything but I'll probably add some more and update in a bit.
"Hello everyone,
"Hello everyone,
Here is as much as an update as I can keep straight. Alot to keep Track of.
99% sure yet she has Chronic Myelogenous Leukemia. (CML)
Today we talked to doctor and go scoop on everything. Its going to be a road but its a manageable road with 90-95% she'll live a normal healthy life.
She's under right now, just had a bone marrow biopsy. From those results they'll be able to tell if its CML.
Normal white blood cell count is about 9-10,000. she is over 270,000 so they need to get that worked down.
In a couple of hours when she wakes up they'll move us to the hospital (Avera). There she will get a catheder put into her jugular veign and do a procedure alot like dialysis where they will take out her blood and remove the excess white blood cells.
On top of that they will start her on a mild pill form of chemotherapy that treats cancer in general. Once they find out for sure its CML they'll switch her to a specific pill that turns the switch off on her white blood cell factories which are going crazy right now. She'll then stay on that medication for the rest of her life.
In time and with more research, she might be able to come off of that medication but they have found in the past that when people come off, they sometimes relapse with an even worse leukemia that won't respond to medication, thereby for now she'll stay on it.
90-95% she'll live a normal life into her retirement. This is the first cancer they found the genetic defect for and thereby are able to treat the specific chromosome that is damaged. We are very thankful to God for this. 10 years ago she would have had a bone marrow transplant and a very low chance for survival overall.
In all, its going to be a rough next couple of days. By killing all the excess white blood cells she'll have alot of toxins flowing through her body and its going to be painful. The chemo and other medication has its side effects as well. By the weekend she should be able to go home and just keep on medication to control the leukemia.
All we ask of is more prayers. We have some decisions to make as well. We need all the wisdom we can get.
Thank you all for prayers and support. I'll keep you informed as we go on."
Tuesday, July 10, 2012
Day 1: What?
Saturday night tessa noticed that the left side of her stomach was rock hard whil her right side was soft. Of course my first assumption was constipation but she said everything was going alright in that area. Sunday it got a little better but started to hurt Sunday night so we decided she go in to get it checked out.
At pipestone they did a CT scan and found her spleen to be doubled in size and sticking out below her rib cage into her abdomen at 22cm (normal is 10cm.) A blood test also revealed her white blood cell count to be over 276,000. Normal levels are around 9-10,000. They called her and myself in and we discussed the possible diagnisis.
Already they were pretty sure it was leukemia, more specifically chronic myelogenous Leukemia. We were told we had an appointment with a specialist in sioux falls the next morning. To say the least we didn't sleep or rest much.
At pipestone they did a CT scan and found her spleen to be doubled in size and sticking out below her rib cage into her abdomen at 22cm (normal is 10cm.) A blood test also revealed her white blood cell count to be over 276,000. Normal levels are around 9-10,000. They called her and myself in and we discussed the possible diagnisis.
Already they were pretty sure it was leukemia, more specifically chronic myelogenous Leukemia. We were told we had an appointment with a specialist in sioux falls the next morning. To say the least we didn't sleep or rest much.
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