- Dreading Little Bittle's blood test tomorrow. Last time they had to poke her like 15 times before getting the vein. This is agony for a mother to watch. How I pray tomorrow will go well.
- Tomorrow I get my 24 hour heart monitor.
- Reflecting on our past 2 1/2 months of trials. Hope to post more on that another day.
- Changing our lifestyle to more "natural" and healthy and organic. This includes cleaning products and foods. I'm hoping Heavenly Homemakers is going to help me out with my plan to move our family toward healthier, more wholesome eating. This is with the hope that our health will improve as we try to eat more natural food and get away from chemicals as much as possible. Little Bittles has some eczema and I have had skin problems and odd rashes for years. We want to see if this will help at all, but I haven't mustered up the energy to truly start on this yet. More research needed.
- Finished reading the book Passionate Housewives Desperate for God. It speaks out against white-washed feminism and the self-centered "me-ology" (books that teach you to pamper rather than sanctify your flesh), which seems to run rampant in many Christian circles these days. I especially like the reminder that my job has far-reaching effects. The way I raise and train my daughter has the potential to affect generations to come. My biggest caution is that it does have some "dominion/kingdom-now theology" scattered in it. There are a couple statements that I completely disagreed with in this regard. I think the authors might hold to reformed theology, which I do not completely agree with, so if you keep that in mind, it's a pretty good read otherwise.
- Finished reading Mistaken Identity. Can't tell you how many times I was in tears reading this book. This is the true story of two Christian families who were impacted by a horrific car crash and a terrible mistake. One girl was wrongly identified as the survivor of a crash in which several people died. It took 5 weeks for the mistake to be realized. This book is filled with scripture, too. I was touched and amazed reading how the Lord worked in this situation to bring others to Himself. Such an encouragement to me, especially while thinking about our recent trials, which are nothing compared to what these families went through.
- I'm being bothered by my lack of organization in things such as closets, drawers, and our pantry. It's starting to drive me crazy, but I feel too overwhelmed to begin.
- It's driving me crazy that the million-and-one things on my mind are driving me crazy! The Lord reminds me time and time again that I need to get my priorities in order. I think I have obsessive tendencies (make that, sinful tendencies) in many things. I am frustrated by the fact that I am so often distracted by things that are really not important in light of eternity. You would think that the recent trials our family went through would remind me of this (and they do!). That is why I am so frustrated! I KNOW better! I pray God will help me in this area. I think it's a matter of daily submitting my will to His. I need to say every day, "Lord, not my will but Yours be done." Things like obsessively organizing my closets and drawers are somewhat important, but not that important. I can't take my closet, organized or not, with me when I die.
- We are dabbling a bit in potty-training with Little Bittles. No pressure, but I thought I'd give it a try since she's running around, talking quite a bit, and understands a lot.
- I really need to work at training Little Bittles better in certain areas, namely obedience and not throwing fits. She is a smart little cookie, and she knows it! During the past 2 1/2 months, child training was pretty much thrown out the window and we let her get away with just about everything. Now I am going to have to work at undoing a few bad habits that were developed.
Tuesday, November 30, 2010
Friday, November 26, 2010
Ah yes...the field of medicine. A person might think it should be possible to get a definitive answer - That it should be a yes or no, black or white, this or that, etc. And while medicine can often provide a concrete answer when it comes to interpreting tests and making a diagnosis, those of us who have complicated health issues know that just as our bodies are unbelievably complex, so is figuring out what the problem is when something unbelievably complex goes wrong with our bodies, especially when the presentation of illness is not "typical."
Yesterday we took Little Bittles to her pediatrician. We were hoping he had received the report from the bone marrow test (which he hadn't yet), and we wanted to discuss with him the results. Here's the thing; when we told him that the test showed she had 15% blasts but no cancer, our doctor didn't really believe that. It's not that he didn't believe she doesn't have cancer; he said, "If they said it's not cancer, then it's not cancer." However, he did not really believe that she could have 15% blasts and NOT have cancer! In other words, he suggested perhaps whoever interpreted the test got blasts mixed up with another cell such as reactive lymphocytes. I think the reason our pediatrician is wondering about this is because usually when they find 15% blasts, it IS cancer. This goes along with what the hematologist told me on the phone; he said that when he first saw the number of blasts she had, he thought that it was leukemia and phoned my husband immediately to tell him that the result on first look was very bad. When he phoned me with the full study a few days ago, he made it very clear that he really did think it was leukemia at first, but that when they looked at the cells, they were normal and not cancerous! There seems to be no explanation for this. The more research my husband and I do, the more we realize that the chance of her truly having 15% blast cells and not finding a single cancerous cell would be
Of course, I have to insert here that we are NOT doctors, so we could easily be wrong about this, but it kind of makes sense in light of the fact that our pediatrician has a very hard time believing the result and that the hematologist was surprised that with that high number of blast cells he did not find leukemia. I believe that time may tell if this is a miracle or if they were wrong with the test results.
Now here's where we get a teeny-tiny bit nervous. We do not doubt for a second that the result could, in fact, be a miracle. We serve a mighty and powerful God Who can heal our bodies and do the seemingly impossible. However, we are also aware that doctors, like everyone else, are human and make mistakes sometimes. So a very small part of us wonders if perhaps they did make a mistake on the test and the results are not correct (Perhaps they got blast cells mixed up with another type of cell, like our doctor suggested was possible). It struck me as odd when the hematologist who did the test told me, "Even if we would have found cancer, we probably wouldn't treat it yet anyway." That comment makes me wonder if maybe he was so surprised that they didn't find cancer when he saw the high number of blast cells that he is wondering if they might have missed it. However, the fact that Bittles is clinically fine right now indicates that if by some very, very small chance they missed finding cancer in the bone marrow, the cancer is not likely acute right now. I personally HIGHLY DOUBT that they would have missed finding the cancer cells because I would think that upon finding the high number of blast cells (indicative of leukemia), they would have been checking out those cells VERY closely for cancer. Our doctor also said that if they say the cells aren't cancerous, it isn't cancer.
Now, clinically Little Bittles is fine right now, which is an excellent sign. There were a few concerns at the beginning about some strange bruises and her not eating or drinking well. However, there is currently no issue with that at all, so it is extremely unlikely that she has acute leukemia right now, given her good clinical presentation. Nonetheless, her high number of blast cells is very, very strange, and our pediatrician wants to keep a very close eye on her for any signs of cancer.
Follow-up: Little Bittles will be having a complete blood count done next week as well as an allergy test to see if she is for sure allergic to Penicillin. Depending on the result of her cbc (complete blood count), she will be getting routine blood tests done once or twice a month until things get more normal. A fever of around 38 is not emergent but warrants a trip to the doctor the next day. A high fever with other signs of sickness is an emergency for her.
Prayer Requests: Wisdom for the doctors as there seems to be some confusion about the bone marrow test results, protection from illness as we venture out a little more, good results from the blood test and allergy test next week, complete healing of our daughter's blood and bone marrow, healing for a diaper rash that appeared yesterday and is much worse today. (Not sure yet if it's just a normal diaper rash or an infection, but in neutropenic patients simple things like diaper rashes can become concerning fairly quickly if they are actually bacterial infections.)
Grace and peace to you,
Wednesday, November 24, 2010
So, to start off, the doctor told me he is now 99.9% sure our daughter has what they call "chronic benign neutropenia" (click on the link to learn more). I think this is the term they use with neutropenia (low neutrophils) when they do not know exactly why the patient has neutropenia and there are no cancerous cells. They do not know if she was born with it or developed it. She is still in the severe range, but there is a decent chance that she might "spontaneously" get over it in a few years. I prefer the term "healed" :-)
Now, here's the crazy thing:
The doctor told me that at first glance at her test, he actually thought our daughter probably had leukemia. This is why he phoned my husband a couple hours after the test to warn him that the results were very bad upon first glance. The reason for this is because of one very strange thing with our daughter's test; she has an abnormally high number of blast cells (click the link for a short description) , the immature "pre-cells" of the bone marrow. Normal is 5% and our daughter had 15%. A high percentage is an indication for leukemia. (From what I read, if you have 20% or more blast cells, it's an automatic leukemia diagnosis.) However, when they examined the cells closer, they were able to tell that all the cells were normal blast cells and not cancerous. They are not really sure why she has such a high number of these cells. All they know is that right now they are not cancerous. Apart from this, the rest of her bone marrow test was typical of what they would expect to find in chronic benign neutropenia. From what I understand, this means that she does have some immature neutrophils in her bone marrow that her body could release early if she got an infection. These would not be as effective as mature neutrophils, but they would be able to provide some "ammunition" if she did get an infection.
Right now she does not have to undergo any treatment for her neutropenia. There is a drug called a granulocyte colony-stimulating factor (G-CSF), which can be administered to help increase your production of neutrophils. However, the doctor told us not to use it unless we're forced to because it might be linked to developing leukemia later on. (10-20 % of patients who are treated with it develop leukemia later on). They are unsure if the drug or the actual condition is linked to developing leukemia.
She is still much more susceptible to infections than the average person, so we will do our best to live a normal life while avoiding contact with anyone who is obviously sick. Every time she gets a fever, she will have to see the doctor, likely go on an antibiotic, and have a blood count done. Depending on the blood count and if she responds to antibiotics, she may or may not have to be treated with the G-CSF. They are hoping (and we are praying) that she might "spontaneously" get over this in a few years. (We are praying for a quicker healing than that.)
How are We Feeling?:
We are SO thankful that our daughter does not have leukemia. This is a huge relief, and we are praising God. After the doctor phoned me with this news, I literally scooped up Little Bittles and she squealed with delight as we zoomed and danced around the house, praising God for the good news.
We are still a little nervous about the fact that she does have such a high number of blast cells, which is commonly found in leukemia. However, we are trying not to worry about this, and we are even wondering if this was the big answer to prayer since I got the impression the doctor was surprised and had no explanation for the fact that the cells were normal, since she had so many of them.
After living in a bubble for 2 1/2 months, we are really looking forward to getting back to some sort of normalcy, including go out and about, attending church, and just getting on with our lives now that we have the bone marrow test results. Yes, we will be a bit more cautious and do our best to avoid people with infections, but I think we will be able to live a pretty normal life for now. Praise the Lord!
How Can You Pray?
Give thanks to God that she does not have leukemia and does not need to be treated yet. Pray for her protection from serious infection (especially because of her allergy to the best antibiotics). Pray that she will be healed from this chronic benign neutropenia. Pray that her abnormal number of blast cells will not develop into leukemia.
Psalm 34 has probably been our "theme Psalm" this whole time. God led my husband to this specific Psalm when my husband was calling out to God when this ordeal first started. We have come back to it time and time again during this time. Here are the first few verses of the psalm.
I will bless the LORD at all times: his praise shall continually be in my mouth.
My soul shall make her boast in the LORD: the humble shall hear thereof, and be glad.
O magnify the LORD with me, and let us exalt his name together.
I sought the LORD, and he heard me, and delivered me from all my fears.
They looked unto him, and were lightened: and their faces were not ashamed.
This poor man cried, and the LORD heard him, and saved him out of all his troubles.
The angel of the LORD encampeth round about them that fear him, and delivereth them.
O taste and see that the LORD is good: blessed is the man that trusteth in him.Psalm 34:1-8
Monday, November 22, 2010
Mommy and Daddy decided that it was probably okay to post a few pictures of me, since we know there are lots of people praying for our family who would like to see what I actually look like. Did you know that my name means, "God Answers Prayer" ? Isn't that neat? Even though we never imagined this all would be happening, God knew that I would need lots and lots of prayer! You can just call me "Little Bittles" for now, even though that's not my real name. Mommy and Daddy do call me that sometimes, although I'm not sure why; it's kind of a silly name. Then again, they have lots of silly names for me. We are kind of a silly family. I thought you might like to know a bit about me and what my life is like. Here are some pictures and "get to know me facts"!
I love to swing!
I really don't like to sleep much, but when I do, I'm pretty cute!
I love cake! Then again, who doesn't??
I started walking when I was just over 10 months old. Now, I run so fast Mommy can barely catch me. I LOVE music so much that whenever I hear music, I break out into a jig!
I am a very good helper, and I like to do all the things Mommy does. See, I even help Mommy vacuum sometimes.
I love to help Mommy bake cookies for Daddy. I get rather upset if I can't be a part all the action. Mommy tells me she is baking for Daddy, but I see her sneak a cookie or two when she thinks I'm not looking.
I help with the laundry, too!
I'm pretty independent. I like to do things myself. I even feed myself sometimes. I like to have a fork in each hand and stir my food around and around.
I have visited lots of doctors and been in the hospital more times than most kids my age. It's kind of weird because most of the time I actually feel pretty good (until they try poking me with those crazy needles!) I think I've had my blood taken more times than my Daddy has his whole life.
My Daddy is pretty awesome. I like to cuddle with him. I don't even mind that he has to wear a funny mask sometimes because I know he's trying to protect me.
That's about it for now! One last shot of me...just because!
I am also happy to report that our little girl was able to come back home on Sunday after spending several days with her grandparents, while we tried to figure out if I was coming down with something else or not. After a few days of swollen glands and a slightly sore throat, I saw the doctor, who did not think it was much of anything. That, combined with the fact that I've started feeling better, helped us decide that we could bring her back home again. I missed her SO MUCH! Here is the crazy thing; until these last couple of weeks, we had only left her for the whole day (not even the night) ONCE since she was born, and she is almost 15 months old! You can imagine how hard it was for me to be away from her when I was in the hospital 3 nights last weekend and then have to send her to her grandparents for another 3 nights right away again. I know she had a really fun time with her grandparents, though, and I'm pretty sure they enjoyed having her visit, too! However, I am happy to have our little girl HOME! She even slept the WHOLE NIGHT THROUGH at home last night, which, if you know anything about her sleeping history, is pretty much a miracle in and of itself!
We have also been blessed beyond belief these last few weeks with all the people praying and caring for our family during this difficult time. Honestly, it brings me to tears often when I think of the amount of love we have been shown by people we don't even know. Just this evening as I dropped off some dishes at a friend's house from a meal she graciously brought us, someone phoned her and was asking about our daughter and my blog updates. Please know how thankful we are for all of you, from our close friends and family, to people we don't even know. Thank you for your prayers and for your thoughtfulness and help. We have definitely learned how even simple words and acts of kindness can make a huge difference for someone going through a tough time. I know my husband and I have talked a lot about how we need to show more compassion to those around us. It is so silly that it takes something like this to show us how we need to help people more, but it is the truth that God has used this experience to teach us this is something we need to work on.
We are expecting to find out about our daughter's test results this week sometime. We are hoping that the fact we didn't hear anything last week is a good sign. It is a bit strange because part of me feels like everything is almost normal today with me feeling better and our daughter home again and looking good, clinically. Then there's the other part of me that knows that with one phone call from the doctor, everything could get turned upside down again and reality will hit us with the fact that even though our daughter looks healthy on the outside, she is actually a very sick and fragile little girl.
How can you pray?
First of all, praise God that I am feeling so much better right now and that our daughter can be home with us again for now! Praise God that our daughter still has no signs of infection! Pray that we will have test results back this week. We still haven't had a definitive, "No, this isn't cancer", so that is still in the back of our minds. Please pray for wisdom for the doctors and us parents as we will likely have to make some decisions as to treatment options for our daughter. Depending on the diagnosis, she may have to be treated with a drug that is quite possibly linked to developing leukemia later on (as high as 20% treated with the drug develop leukemia in 10 years).
Stayed tuned, I'm going to share a picture or two of our little girl next time! With all the people we don't even know praying for her, we figured it might be nice for them to put a face to that little girl they are praying for! Names...well we are going to hold off for now online. If you know us, and want us to publish your comment, please don't refer to our real names. If you prefer, you can leave a comment with our names, and we will definitely read it. However, we probably won't publish it on our blog, just for the sake of being extra safe for now. We DO appreciate all the comments and support, though!
Saturday, November 20, 2010
Friday, November 19, 2010
I found myself singing this song yesterday and I had to stop vacuuming because I was bawling my eyes out (nothing new these days). I know in the end all the pain, trials, and suffering will be worth it all. I don't know for sure, but I believe all the trials that we've been going through lately are either a huge test of faith, a spiritual attack that God has allowed, or both. God is faithful. He is good. It is true that in the pain God draws near. I have no idea about the pictures that go with the song, but I like this version of it. Here are the lyrics to the song. I hope it's okay to post the lyrics here. They are by Keith and Kristyn Getty, but I'm not sure if Kristyn is singing on the video because it's a slightly different version than the one I have on cd.
When Trials Come
When trials come no longer fear
For in the pain our God draws near
To fire a faith worth more than gold
And there His faithfulness is told
And there His faithfulness is told
Within the night I know Your peace
The breath of God brings strength to me
And new each morning mercy flows
As treasures of the darkness grow
As treasures of the darkness grow
I turn to wisdom not my own
For every battle You have known
My confidence will rest in You
Your love endures Your ways are good
Your love endures Your ways are good
When I am weary with the cost
I see the triumph of the cross
So in it’s shadow I shall run
Till You completes the work begun
Till You completes the work begun
One day all things will be made new
I’ll see the hope You called me to
And in your kingdom paved with gold
I’ll praise your faithfulness of old
I’ll praise your faithfulness of old
Keith & Kristyn Getty
Copyright © 2005 Thankyou Music
I'm just going to lay it out out there today. Here it goes.
I am seriously trying to not freak out. Today I am majorly struggling with fear. And yes, fear is of the Devil. I know that. I know the truth, but I am still a sinful human being and am struggling with the temptation, nonetheless. I have fear of not knowing what is wrong with me, fear of not knowing what is wrong with our daughter, fear that I have something serious that the doctors aren't figuring out soon enough, fear that I might have cancer, fear that I might drop dead any day if they don't figure it out soon, which would leave my husband alone to care for our daughter, fear that the worst is yet to come, fear that I still feel pretty awful and my symptoms are still very typical of leukemia. Fear, fear, fear. In fact, now with my swollen lymph nodes and not really having any other signs of actual illness other than feeling generally terrible, I have just one more symptom of leukemia I didn't have 2 days ago. It doesn't help that I know for a fact one week ago, leukemia was high on the list of possibilities with my then-high white blood cell count. In fact, doctors were kind of freaking out, mentioning things such as a bone marrow test, and that was, in turn, freaking me out. Oh, and let's not forget the resident doctor who, after hearing me explain how I was feeling, looked at me and coldly said, "Did you google that or something, because that's just too textbook leukemia." Of course, I'm pretty sure she thought I was a drug addict looking for pain meds because that was my only main complaint at the moment and she treated me just awful and couldn't even feel the lumps on my legs because she didn't take the time to properly examine me ("Lumps? What lumps?"). I wanted to holler, "I DON'T WANT A PILL. I WANT ANSWERS!" I know my body pretty well, and I just know something is not right. I just know it. I don't know what's wrong, but I know something's wrong, and I am desperate for answers.
I feel like I just can't get answers no matter how hard I try. I feel like the doctors aren't taking me as seriously as they should be, and I just want to tell them, "Listen! SOMETHING is WRONG with me!" But it seems like all I can get is, "It's weird. Who knows?" Please don't get me wrong, I am thankful for our doctors and I know they are a whole lot smarter than me, but sometimes I expect them to know more than they know and that is not fair to them. The one thing I do ask is that they take me seriously and try their best. I do think that finally some of them are taking me seriously.
Oh, and I'm told it can't be leukemia now because my white blood cell count it normal. That is the only reason they are no longer considering it, as far as I know. I believed that one at first and thought, "that makes sense" until my husband, a very intelligent medical professional, looked up leukemia in his medical textbooks and found out that in fact you can have a low, high, or normal white blood cell count in leukemia. Part of the reason I'm getting worried again is because of my tachycardia (high heart rate). Pretty sure getting worried and having tachycardia is not the best plan. Ha! I thought that this, along with my normal cbc's, was the reason the doctors are no longer thinking leukemia. Turns out that as I look up causes for tachycardia, it's again a classic sign of leukemia. WHAT?? I think I need to stop googling my symptoms. And yes, I told that resident doctor of course I researched my symptoms. Who wouldn't when you haven't got any answers from the medical professionals? Are you telling me that if you were going through this, you wouldn't look up in your medical textbooks to try to figure out what's wrong with you?? Pretty much I have every single symptom of leukemia except the abnormal blood count, which, like I mentioned before, can be normal in some leukemia patients. I am ready to get a second opinion again (make that a 4th or 5th opinion). Is it bad of me to hope that these swollen lymph nodes in my neck and everywhere else develop into a virus or something so that I have an excuse to go back to the doctor to seek more answers? It's scaring me that I have all these swollen lymph nodes but no sore throat, no fever yet, and no cough/head cold, etc. If it would just develop into something, I could go back to the doctor, but instead here I am waiting. Waiting, waiting, waiting. Waiting for my results, waiting to see if I get worse or better, waiting for our daughter's results, waiting for that phone to ring, waiting for my next medical appointment, waiting to see if I am actually sick or not so our daughter can then maybe come back home. I guess I need to learn patience. And as I type this out, the Lord brings this verse to mind:
There is no fear in love; but perfect love casteth out fear: because fear hath torment. He that feareth is not made perfect in love.1 John 4:18
No matter what I may feel, the above passage is truth, and I am thankful for that.
Thursday, November 18, 2010
Rewind to last night where I spent a couple of hours being up with our crying daughter, who did not have a very good night at all. After some gripe water and tylenol, she finally cried it out a bit and went to bed. We were worried at first that she might be sick because she was SO crabby, but she seems okay now, just a bit grumpy.
I started out this morning with a doctor's appointment and found out that the ct scan of my stomach and pelvis discovered a 4cm cyst on one of my ovaries (You probably didn't really care to know that, but I figure you might as well). Thing is, it probably isn't related to any of the other symptoms I have other than some pain I've been experiencing in my lower right side the last of couple days. It's probably just one more thing to add to the list of my medical problems. Now I have an ultrasound scheduled in January, so they can figure out what exactly to do with it and if it should be removed. My family doctor agreed that all these things have gone beyond "just" stress-related and that there are other things going on. On top of it all, I have swollen glands and lymph nodes now, which is indicative of either a virus or infection brewing in my body, or, it is possibly part of my mystery diagnosis. The doctor is pretty sure I'm coming down with something, but we kind of have to wait and see what it is yet before I get started on antibiotics. (As the doctor has said, something is messing me up BIG time). Normally this would be no big deal, but with our daughter's health problems and not being sure what she has yet, we have to be extra cautious about her being around sick people (at least until they figure out exactly what she has and if they can treat it). So, she has been shipped off to spend some time with her grandparents while we wait to see if I get better/worse. I'm sure she will have a great time, although I had to warn them that the night might not go so well!
Yep, I miss her like crazy already and want to spend every minute with her since she's not healthy and all, but this is where some of the crumbs turn out to be a bit sweet. As much as I would love to be around her, the truth is that I really need some rest and need to protect her from sickness right now as much as possible. I am SO thankful to have grandparents nearby who can take her for a day or two while I recover and rest at home.
Some more sweetness to this day (those who are "assist"ing us - Lame, I know.)
- We have people helping us out with meals for the next week. Thank you, thank you, thank you to you all! You are a HUGE blessing!
- Our neighbour brought us over some yummy chocolate cake
- I am going to try to plan a date night for when my hubby gets home from work this evening. He works late, but with our daughter being at Grandpa and Grandma's, I figure we should chill out a bit, maybe play a game or something. With all the stress of the past 2 months, it feels like we barely talk to each other about anything but our recent "issues." We really just need a little break from it all.
Tuesday, November 16, 2010
I was hospitalized, had a ct scan of my stomach, blood tests, an electrocardiogram and an echocardiogram of my heart
My husband had an endoscopy and surgery
Our daughter had a bone marrow aspiration
(And on a positive note, we are all home tonight)
- Our daughter's bone marrow test was completed today and she had no problem with the anesthetic and is running around already (with only a slight limp)
- She is home now
- We are all home together for now
- My husband, daughter, and in-laws had a safe trip back here in the midst of a winter storm brewing
- I am at home, and pain-wise I'm feeling better
- I had my echocardiogram today, have a ct scan of my head tomorrow
- We have some awesome family and friends who care about us deeply, love us, and pray for us more than we'll ever know
- We serve the Risen Saviour who grants us strength day by day when we have no strength of our own left
- It's basically a miracle our daughter is still infection-free
Now...the bad news (or more like the Prayer News)
- Our daughter's bone marrow test results were not good at all: Basically before the test was done, the doctor told my husband there was a 95% chance that the results would be good, that they would find her neutrophils being destroyed at a later phase, which would mean her immunity wasn't as bad as her blood test shows. This was the expected result. However, our daughter happens to fall into the 5% range in which her neutrophils are destroyed basically immediately, meaning her immunity is even less than expected and meaning there is probably something more serious going on and it may not be chronic benign neutropenia. Update: I think we misunderstood the doctor about this when he first phoned us. I think what he really meant was that she has a very high number of the most immature cells (blast cells) in comparison to the mature cells, which is strange.
- This means any bacterial infection could be life-threatening for her (even more so than before)
- She's allergic to cephalosporins and penicillins (antibiotics effective in fighting bacterial infections)
- This means more waiting and waiting for results, which is very difficult (could be 10 days or so yet)
- My head and vision has been feeling pretty funny today, and I'm not sure what's causing it
I pretty much don't have the words to say how hard this is for our family. Are we okay? Well, that depends what you mean by that question. Yes, we are "okay" as in we still trust the Lord, we aren't depressed, we take things day by day (more like moment by moment), etc. Are we "okay" as in this is easy, we can do this on our own, we're not tired, we don't need anyone's help or support or prayers. No. In fact, that's a big resounding No. So, if you thought you were through praying for our family, we beg you to please reconsider! And those of you who facebooked me and offered help, well you may be hearing from me soon :-). And am I wondering "why"? Yes, we are wondering why. I'm sure you are all getting sick of all this "bad news" and I don't want to rain on anyone's parade or depress anyone, but this is the reality we are facing (even though it often feels more like a nightmare some days.)
I told the Lord today, He is welcome to come any time. We are ready for the rapture. We are ready to exchange these ragged (albeit young!) bodies for our glorious new ones. That being said, we must still strive to serve the Lord as long as He grants us breath. He obviously has us on this earth still for a reason. We must still give thanks for each day, each moment, He gives us. Today we are home together as a family. We don't know what could happen tomorrow.
Sometimes I might pour my heart out on this blog and it might get a little "raw". I might get more honest than people feel is necessary in today's culture of "Hi, how are you? Fine? You? Fine?" But shouldn't it be okay to be transparent, to not pretend, to get real? Not sure exactly just how "raw" I'll get on here, but I thought I should warn you all just in case.
I'm outta here for now. Time to spend a few precious minutes with my husband. Sad how it takes something like this to make you realize just how precious every moment is.
Monday, November 15, 2010
I was admitted to the hospital on Friday afternoon after seeing a few different doctors and trying to convince them that something was wrong with me. (If you recall, I've been feeling pretty awful for the past month with weird painful lumps, exhaustion, dizziness, and general pain that just kept worsening every day). After a thorough examination, the doctors finally decided that oh yes indeed, something was definitely wrong with me. After a brief leukemia scare, which has now been ruled out ( I think), the question remains: what exactly is wrong? I was put on a heart monitor due to my fluctuating heart rate, which at rest was 127 at times vamping up to 150 when I just got out of bed. I continued to have major leg and ankle pain at times, awful pulsating headaches, occasional tremors, and temperature fluctuations while in the hospital. I was put on all sorts of medication and put through all sorts of tests. Unfortunately, I still remain mystery diagnosis.
This morning my heart rate was steady at about 64 bpm for a little while, which was a really good sign. My heart rate did go up later on in the day, but it was overall much better than it had been the past few days. This morning I had a ct scan done of my abdomen (with the dye...oh that was not the most pleasant experience, let me tell ya!). I also had an electrocardiogram of my heart this morning. Tomorrow I will have an echocardiogram of my heart done. On Wednesday I have a ct scan of my head scheduled. Oh..and I gained at least 10 pounds (no joke) in the hospital these 3 days...lovely. I'm going to blame it on all the awful steroids they had my on plus lying in bed for 3 days straight:-). Pretty sure I can't attribute the weight gain to the gourmet hospital food (although it truly wasn't that bad this time). It was like they put me on these meds and suddenly I was starving all the time.
So, what exactly do they think is wrong?
Well, the doctor thinks that I've had some kind of problem for a long time now, but the stress of everything that's been happening lately just "brought to light" a problem that was already there. (I have a feeling the flu shot didn't help matters, either!) She suspects it could be either my adrenal glands, pituitary glands, thyroid (so an endocrine problem), an autoimmune problem, or possibly neurological problem. ( I think that's in the order from most likely to least likely). See, the weird thing is that when I first went to my family doctor about a month ago and got blood work done, my blood sugar was low, which was weird. We just kind of passed it off as "oh well" no big deal, even though I was pretty sure I had eaten breakfast that morning. I also had a lot of problems with dizziness and low blood pressure when I was pregnant. The reason why an endocrine problem is high on the list of possibilities is because it seems like I'm up and down. No pain, then tons of pain. Cold, then hot. Fairly normal heart rate then sky-high heart rate. Tremors, then no tremors. Feeling okay energy-wise to flat-out exhausted, etc. etc. The doctor is pretty sure my feet and legs have discolouration on them as well. My hands seem to get strange-looking at times, too. She is pretty sure the lumps are just a secondary inflammatory response to whatever is going on.
Anyway, I'm exhausted.I know this has been a very disjointed post, but oh well. I just had a weird pain reaction thing right now in the middle of typing this just before my hubby phoned me. I just talked to him and Bittles is settled in for the night. Hopefully her test will go well tomorrow and they will come home safely tomorrow night. I'm off to take my heart pill and hit the hay. As always, prayers are welcome :-)
Saturday, November 13, 2010
So, here I am in the hospital, typing away on Microsoft Word so that my husband can transfer my post to my blog at home. What a crazy 2 months it has been.First, our daughter got seriously ill and was hospitallized twice, seen be a few doctors and specialist, and is now having a bone marrow test done next Tuesday. Then one month ago, I discovered a painful lump on my leg. Then, I got the flu shot. One week later, my hands and feet started to get really painful and more painful lumps appeared by the day. Now, one month later here I sit in my hospital bed, stumping the doctors as to what on earth is going on with me. I have strange lumps all over, which I have now been told are definitely not lymph nodes (although a few other doctors said they were). I have had a lot of general pain everywhere, but especially in my legs, which I would describe as a deep aching feeling, although sometimes the pain shoots down my leg and pulsates.I have strange bruises on my legs. I have a constant headache, and pain in my neck and chest when I breathe. My blood pressure has been generally low (107/58), and my pulse has been high every time(100-124). I also have a very tender stomach, even though my appetite is still good. I have a weird sensation of my body shaking (on the inside), even though lots of times I’m not physically shaking. I am exhausted beyond belief. There are just so many strange things going on, the doctors are stumped but they know something is up. It took us several trips to the doctor and a few trips to the E.R. to finally get here. At times I felt like I was going crazy, seeing doctor after doctor, trying to explain how I was feeling, but I just knew something was wrong so I kept being persistent. At least now they are taking me seriously (especially with my wonky blood pressure and pulse and lumps) and they are trying to figure out the cause of all this.
What’s happening right now? I am on a wackload of medications. I’m on a corticosteroid for inflammation in case it’s an automimmune problem. I’m on a bunch of pills for my stomach pain. I’m also on pain medication and anti-virals. So far I am not on antibiotics, but there was mention of possibly starting some in the next while. I have a heart monitor hooked up to constantly monitor my pulse. They are doing a CT scan of my stomach probably on Monday and specifically want to check out my adrenal glands. I’ve had blood taken more times than I can count. When I talked to the doctor today (an internist specialist), she said I’m probably going to be here for awhile. She said she doesn’t know what’s going on, but it’s weird. She said it could be my heart, my thyroid, my adrenal glands, or a weird virus; it could possibly have been the flu shot. On Wednesday night they were worried it could be something like leuekemia since my white blood cells were high. However, my last cbc was normal, so that lessened the likelihood of it being leukemia. Being here for the next few days means that I won’t be able to go up for my daughter’s bone marrow test on Monday. It is SO hard being away from her. I miss her like CRAZY. I miss my home like CRAZY. I miss our normal life like CRAZY. Thankfully, my husband has been able to visit me quite a bit since we have family willing to look after our daughter during a lot of the day. But when he’s gone I miss him like CRAZY too. This is so hard on him, too. It’s next to impossible for him to work since he’s under so much stress with what’s going on with his daughter and now wife. I am just desperate to get home and back to feeling like my usual self asap. Please pray they will figure out what’s wrong with me. Pray for my healing. I feel like I’m going crazy and I miss our normal life so much. Pray for my husband and strength to get through this awful time. Feel free to visit me if you want to. Unless I’m sleeping, I’m up for visitors most of the time.
Wednesday, November 10, 2010
Trip #2 to the hospital was this afternoon for myself and my weird health issues. My issues have been getting progressively worse with each day for the past month. I have several lumps (probably swollen lymph nodes) in my legs, pain around my joints, and new today was a humongous bruise on my leg for which I have no explanation. I have other weird bruises as well and have just been feeling pretty awful for the past month. And, it felt like there was a floater in my knee today too, which I'm pretty sure was courtesy of another strange lump that mysteriously appeared. After a bit of deliberation, I decided that I needed to go the doctor again, which meant a trip to the E.R. After a 3 hour wait (which was understandable since I wasn't exactly an "emergency"), I saw the doctor and basically was told it's probably nothing serious and just ordered some more blood work. (My cbc's from 2 weeks ago were perfectly normal and I don't think they really expected to find anything different today). I was told to go home and come back in an hour and a half to get the results. I went home, discouraged and wondering if I was just making this all up in my head. After an hour and a half, I headed back to the hospital (which brings us to trip #3 for the day) for what I thought was going to be just my blood test results. So, after a much shorter wait, I see another doctor who starts asking me why I left the hospital, why was I sent home, etc. etc. I explain that the doctor just told me I could go home and come back for the blood test results. He then examines me from head to toe and starts asking me several questions (I refer to them as the "cancer" questions). At this point I was getting a little nervous because the doctor was obviously concerned. Then I asked him if they had my blood test results back. He said yes, and that my white bloods cells are very high. Okay. So, now there is a problem and reason for concern. After examining me, he then tells me that he is going to call in the internist to examine me as he is concerned. So, then the doctor of internal medicine examines me from head to toe and spends a great deal of time with me. They are concerned now because my white blood cells are significantly high. They are also concerned because I have all these weird things going on and after examination, my stomach is obviously in pain. So, the end result is now I have a ridiculous amount of blood work being done on Friday along with a chest x-ray and an ultrasound scheduled. There was also mention of a bone marrow test for me if my white blood cells don't straighten out soon. Not many ideas as to what this could be yet. Infection, cancer, virus, some other weird thing (autoimmune). Oh dear. Can we possibly be any more stressed? I fear the answer to that. So yeah, anyway, we are currently going through the worst days of our life so far. My poor husband is stressed beyond belief now that not only his daughter is unhealthy but now his wife, too. I truly believe it is often harder to see loved ones go through health problems than to go through them yourself. I worry about him because he is so stressed. So, please, please pray for us. We never imagined our daughter having to go through all of this, and we never imagined that now I would be going through my own health issues now, too. I think I spent a combined total of 7 1/2 hours at the hospital today. My hands and wrists are now in too much pain to type anymore. I think I'm going to go to bed; hopefully I can sleep. The really crummy thing is that I have to stop breastfeeding our daughter now because of the meds I have to go on. Normally this would be no big deal, but with her low immunity, I kept breastfeeding her in hopes that it would provide her with more protection against infection. Last time I stopped breastfeeding her, she got horribly sick. Please pray especially much for her now, too. Thanks in advance!
Tuesday, November 9, 2010
First of all, our daughter's bone marrow test is scheduled for November 16. She is getting routine blood work done tomorrow as well. Your continued prayers for her are so very much appreciated. She has so far stayed infection-free since this whole ordeal began, and other than her blood work and the occasional mouth sore, she is doing quite well.
I have been dealing with my own health issues as of late, so I decided to go to the walk-in clinic today just to see another doctor and get checked out again in case I have an infection of some sort. I also have another appointment with my family doctor later next week. Basically, I am experiencing pain in my joints, especially in my hands, wrists, and ankles, and now pretty much all-over. I have also had the occasional bout of weakness, which could be due to low blood pressure or blood sugar. My last routine blood test showed low blood sugar, which is a bit strange because I had eaten breakfast that morning. I am discovering strange lumps every day now, and likely what's going on is an inflammatory response to something. Both doctors I have seen so far are pretty sure the lumps in my legs are swollen lymph nodes (they are painful when pushed on), but the cause of them is unknown. I have had blood tests done to check for an infection, and today I also had blood work done to check for other things such as an auto-immune response and rheumatoid arthritis. Of course, I want to know if it could be cancer and the answer is "probably not" since I have the joint pain and the lumps feel like swollen, painful, lymph nodes.
I know a lot of people probably think this is stress-related, and they might be right. However, the truth is that the last week has not really been all that stressful, and emotionally and spiritually I am doing okay. I'm not depressed; I'm not even really sad. A few weeks ago I was in a lot worse shape emotionally and had bouts of crying nearly every day regarding my fears about my daughter's health, but this past week I've hardly cried at all and have felt so much peace about the whole situation. My personal opinion (of course, I'm not a doctor) is that perhaps the stress triggered something such as an auto-immune response. My mom has a lot of health issues and recently found out that she is gluten-intolerant. From what I know, an inflammatory response can sometimes be related to gluten-intolerance, and often the gluten-intolerance (although always there) will not cause any noticeable symptoms until something (such as stress) triggers the symptoms. I have my suspicions that maybe, just maybe, this is what's going on. Besides my recent joint pain and inflammation, I've always had issues with my skin and have had weird rashes occur and flare-up. I'm scheduled to see an allergy specialist in December.
Today, I am missing normal. I miss the way I used to feel (which was pretty good, physically). I miss being able to go out and about without a second thought. I miss being able to visit family and friends whenever we wanted to. I don't think I'm bitter about it or even really sad about. I just miss it. I guess part of me is a bit nervous that things may not ever be back to normal as we knew it. The other part of me feels ridiculous for feeling this way. I know that we still live a very comfortable life. I know there are so many people out there who have had "normal" changed for them forever in a tragic instant. I know there are people out there whose "normal" right now is having to watch their child slowly die. I know that there are millions and millions of people who do not have food to eat, clean water to drink, or a warm place to sleep. And that is why I feel so silly for feeling this way and for missing our former "normal". Because, really, our new normal is incredibly more comfortable than millions and millions of other people's "normal". Get what I'm trying to say?
A passage I've been considering lately:
My brethren, count it all joy when you fall into various trials, 3 knowing that the testing of your faith produces patience. 4 But let patience have its perfect work, that you may be perfect and complete, lacking nothing. 5 If any of you lacks wisdom, let him ask of God, who gives to all liberally and without reproach, and it will be given to him. 6 But let him ask in faith, with no doubting, for he who doubts is like a wave of the sea driven and tossed by the wind. For let not that man suppose that he will receive anything from the Lord; 8 he is a double-minded man, unstable in all his ways.James 1:2-8
Notice how the Bible does not just say to tolerate or "push through" or even just simply endure the trials. It says to count it as JOY! I cannot honestly say that I am at the place where I am counting it all joy, going through these trials. I think it's a difficult thing to not just endure the trials, but rather be joyful in the trials. I pray God will help me get to that place, but I am not there yet. I am in the "enduring" and "trusting" place, but I don't think I'm in the truly "joyful" place.
Here's the other thing I'm struggling with - the question Why? I have wondered if perhaps this is due to sin in our life. I know that sickness and such things can be caused by sinfulness. See James 3:13-16. I have searched my heart, and my husband and I have prayerfully considered this, confessed sins to each other and to God, and repented of the ones that the Lord has brought to mind. I have wondered if perhaps this is not sin-related but is only happening so that God's glory might be manifested. See John 9. I have also wondered if this is happening for no other reason than simply a test. See Job 1:1-12 and the above passage in James 1:2-3. Job's friends tried to convince him that he must be doing something wrong, and yet the Bible is clear that Job was not suffering because of wrong he had done. And yet, strangely enough, I feel like Job even typing this up - questioning when I really have no right to question and "uttering things I do not understand". In the book of Isaiah, God says "My thoughts are not your thoughts. Neither are your ways my ways."
I suppose that is a good place to leave off at.