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!
Thursday, August 23, 2012
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
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