Neutropenia is GONE!!

We have EXCITING news!! Elianna's last blood test result confirmed her neutropenia is GONE! Praise the LORD!!

If you recall, we had her blood tested when she got sick about a month ago and were surprised when her results came back normal. We retested a couple weeks later when she was healthy and just recently found out that her neutropenia is, in fact, gone! "Elianna" means my God has answered. We are so thankful He answered our prayers with a "yes." How neat it is to think of her name and its meaning. We had no idea how much prayer would be a part of her young life when we chose her name.

We know there are hundreds of people who have prayed for her over the past year and a half. It was amazing to hear of how she was on the prayer chains of churches we never even knew of. We sincerely thank all of you who prayed for our daughter and family over the past year and a half. The first few weeks before and after her diagnosis were especially difficult, and we know it was only by the Lord's grace and the support of His people that we were able to stay sane. The week after her bone marrow test when we were told by the hematologist it was probably leukemia was definitely the hardest week I have ever lived through. It still boggles my mind that her marrow result (that her excess blast cells were not cancerous) was basically unexplainable.

Going through that definitely taught me to be more compassionate toward others going through difficulties of all kinds. I honestly cannot fathom how hard it is for those who actually have to see their child go through a serious illness like cancer or those who lose a child.

Thanks also for your understanding of her condition and our feelings about it. We appreciated so much when you would let us know of your colds, fevers, coughs, etc.

And to those of you out there who have never even met me or my family but took the time to pray for us, thank you!!

One Year Ago...

One year ago, things were quite different around here. Ellie was undergoing her bone marrow test, and I was stuck in the hospital dealing with my own health issues of tachycardia, hypotension, and so much pain it was difficult to walk, lift my arm, or type on the computer. One year ago, we lived an entire week thinking that our daughter likely had leukemia and the doctors had even tossed that word around me as a possibility for my own health problems (quickly ruled out for me, though, thankfully). It was certainly the most difficult week(s) of our life so far. There were many, many tears shed and many, many prayers sent up. Many times we wondered whether the Lord was going to take Ellie home far sooner than we had ever imagined. We are grateful that it was not her time and we have been blessed with another year with our daughter, with no hospitalizations since last December!! We are SO thankful!!!

It is actually very strange thinking back to what life was like for us a year ago. My husband and I were talking the other day how some days we almost (but never totally) forget about our daughter's condition, and then the next day our thoughts are so focused on it that we become very protective and paranoid, wondering if we should be more careful. I know people don't understand what it's like unless you've gone through something similar, but believe me, it is extremely difficult to know just how careful (or not careful) we should be. Someone is getting over a cold, and isn't too sick but just a little? Can she be around them? Often we don't know what to do, but our personalities tend to lean us toward the side of caution. And yes, I still hear every little cough, sniffle, and sneeze from miles away! So if we switch seats during church or quickly switch grocery aisles or skip a big family gathering during cold and flu season, please don't be offended. We probably just observed someone with signs of illness, and we steer clear whenever possible. Like I said, the answer is not always cut and dry, and we struggle with knowing what to do in many situations.

The temptation to worry is now more to do with worrying what will happen if she gets sick with a bacterial infection or viral illness with fever (although nothing is impossible with the LORD!). And perhaps the biggest temptation is worrying about her condition developing into leukemia since our understanding is her having a bone marrow dysfunction probably increases her risks. These are things I need to lay down at the foot of the cross, though, admittedly it is difficult some days.

I would be lying if I said that going through this all hasn't changed the way I think/feel about our daughter (and any other future children.) I have a much greater awareness of just how fragile life is. We forget that our days are numbered, and only God knows when our time is up. We need to make each moment count for His glory and cherish the precious gifts He's entrusted to us for our short time on earth.



Psalm 34 was our theme psalm for the difficult time last year. The Lord gave this psalm to my husband when he was praying one night.

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

Giving Thanks,

Ellie Update

This morning (Wednesday, June 8) I got Ellie's blood test results from her last CBC done this week. She currently goes for check ups and blood work every 3 months. The results are pretty much the same as her last test other than a slight improvement in neutrophils but a decrease in total white blood cells. Her total white blood cell count is only 3.6 and the normal range is 5.0 - 17. 5. Her neutrophil count is at 0.46 , which keeps her borderline severe range (0 - 0.5). Since her platelets have been in the normal range, it seems her complete WBC has decreased. Her total WBC was actually in the normal range when her neutrophils were at their lowest. Neutrophils are just one component of your white blood cells. Other than the low overall count and the slightly improved, but still very low neutrophils, everything else in the test was normal. Her check-up went well, and the pediatrician is quite pleased with how she is doing. She really hasn't gotten sick much more than any other kid. In fact, I would consider her to be healthier (in terms of illness) than the average toddler. We did give her a vaccination last week and she seems to have tolerated that well. The plan is to go ahead with the next vaccinations (MMR and Varicella). I'm a bit nervous about the live vaccines - I won't lie. I don't feel great about giving her the shots, but I don't feel great about not giving her the shots. But, we've done a lot of research, and my husband and I feel like this is the best choice.

On to other Ellie news....

She's spitting out more words every day and says a few 4 word sentences. She is going through this super cute stage right now where she is SO cuddly and affectionate. We are loving it. Just today, my husband wasn't feeling well and she went over to him and said, "Kiss it better? I love you Daddy! (kiss!) All better!" That just melts my heart. She takes turns running back and forth hugging me and my husband and telling us how much she loves us. She even called me sweetie-pie today! Ha! Every morning when my husband goes to work, Ellie says, "I'll miss you Daddy. I love you Daddy. See you later Daddy. Hug. Kiss." She loves to take care of her dolly and play Mommy with her. She is really into colouring and building towers with her blocks. She loves to clean up and can't stand messes. If she accidentally spills something she says ,"ohhh..mess! Mess! Clean it up!" and then proceeds to wipe it up. Meal times are still an issue with her picky eating and difficult time sitting still. Bed times have improved drastically and at home we have no issues any more. Going to other people's houses is still touch-and-go. Sometimes she does well...sometimes she doesn't. She loves to sing and any time she hears music, she says, "Song? Song?" She will sit at the piano by herself and pretend to play and sing "Jesus Loves Me." She is starting to learn to count to 10 and sing her ABC's. All colours are still "yellow" to her! Her favourite shape is a circle. She is very observant and any time she hears even the faintest beep she will say "Beep Beep." She recognizes TONS of objects. Her memory amazes me as she has many songs mostly memorized already and will sing them to herself often. Whenever we drive past church, she yells out "church!" If we go through a drive through, she gets really excited and asks for either a "hamburger", "fries", or a "smoovie."
She LOVES to help with anything and everything. She puts things in the garbage, many times without me asking and puts her toothbrush in her drawer. She will follow almost any simple command...except for when she doesn't want to listen, of course! She sure is special, and I wouldn't trade her for the world.

Fever and Rash

It's been another eventful week for our household. I'm pretty tired and trying to recover from the past 3 sleepless nights, so I'll make this short. Last Thursday, like I mentioned before, she had blood work and a check up done. The results from that test were about the same as before. Her neutrophils were very slightly higher than they have been, which is always nice to hear. I was my usual paranoid self at the clinic, using my disinfecting wipes on all points of contact. The thing about doctor's offices is, well, it's where sick people go. Pretty sure Ellie picked up some sort of bug while we were there (or at the hospital getting blood work done). Oh well. It happens, obviously.

So, on Sunday, I noticed Ellie had a low-grade fever. She had it on Monday as well. On Tuesday, however, she seemed to be better. On Wednesday, her fever came back a bit higher this time and I noticed a couple red spots on her back and tummy. Thankfully, I was able to get her in to see her pediatrician the same afternoon. By the time she saw the doctor that afternoon, she was covered in a rash. At that point, though, her fever was still not too bad, just hovering around 38 C. The pediatrician examined her and said he was pretty confident it was viral. He decided not to order tests since her fever wasn't too bad at that point. If it got to 38.5, then we had to come back. Well, at supper time, it was right around 38.5. We decided to wait it out a bit. Then around 2 a.m. she was just miserable, and her fever was 38.8. We went back and forth about whether we had to bring her in right then to the ER since her fever was above 38.5. However, we figured that waiting 6 hours until the morning was probably okay since the doctor had already seen her that day. For the 3rd night in a row, I eventually crashed with her on the couch. In the morning, praise the Lord, her fever and rash were basically gone! So, we ended up not having to take her back to the doctor for the myriad of blood/urine tests. She's seems quite a bit better today, so we are pretty confident it's just a virus of some sort. I'm in recovery mode today, mostly just chilling and cuddling on the couch with Ellie. We tried to have a little nap earlier today. She was playing in the bed, while I was attempting to nap. In a half-asleep state, I suddenly awoke with a start to Ellie peering at me and trying to poke her finger in my mouth. LOL. I feel like I'm still in a half-asleep state, so it's time to sign off.

Update on Ellie & Vaccine Decisions

I was still planning on having my blogging break extended a bit longer, but since we took Ellie to the pediatrician today for a check-up, I'm going to write up a quick (hopefully!) post.

She sees both a pediatrician and a family doctor for routine check-ups. Since she has chronic benign neutropenia, her pediatrician sees her more often. Today, I took her for a check-up, and it went well, other than me having to bribe her with a cookie to stand on the scale. We're trying to work on obedience, but we're not quite there yet :-). He examined her and talked to me about her eating habits, development, etc. He also ordered a complete blood count and reticulocyte count just to see where she's at right now. I was pleasantly surprised that she actually sat fairly still on my lap for the lengthy appointment.

Then, he mentioned one of the topics that always ups my anxiety meter: vaccinations. Depending on her blood test results today, he is going to let us know whether or not he recommends having her vaccinated. Our 18 month old has not yet received her 12 month vaccines, due to her health issues. I realize there is a ton of controversy about vaccinations, and I'll just straight up tell you where I stand on the issue. I'm about 65% for vaccines and about 35% opposed to vaccines. I am apprehensive. I am uncomfortable with the adjuvants in vaccines. I am uncomfortable about some of them being developed from aborted babies. I am uncomfortable with the serious childhood diseases that have virtually been eradicated, due in part, from the development of vaccines. I am also uncomfortable with the fact that since our daughter's immune system is quite low, she is at a higher risk of catching the more serious illness and developing more serious complications.

Although I'm pretty convinced that vaccines are good ways to eradicate serious diseases, I'm not convinced that vaccinating your children does not have the potential for other negative effects on the human body (think allergies, gastro-intestinal issues, perhaps attention deficit problems, etc.). Whether a good thing or a bad thing, the fact remains that a vaccine is an injection of a foreign substance into your body that elicits an immune response. The fact also remains that, although some people argue that there is a link between increased autism and increased vaccinations, the majority of children are still okay after being vaccinated (although I'm not so sure about the other long-term effects such as the aforementioned allergies, etc. which would be pretty difficult to prove one way or the other.)

Most importantly, however, is the absolute fact that God is sovereign. I have a very strong belief in the sovereignty of God, and therefore, my mind is better put at ease, regardless of what we eventually decide. God has the power to prevent any potential negative effects from the vaccines. He also has the power to prevent our daughter from catching any serious illnesses or having serious complications from them if she does not get vaccinated. That is not to say that we should not strive to make an informed decision and educate ourselves about the risks and benefits of vaccinations. I definitely need to do some more research about this whole thing before we make a decision. Although our daughter's immune system is low, because she is not in day-care and we will be homeschooling her, she has very little contact with sick people. This is another thing to consider.

Do any of you have any thoughts about vaccinations? Anyone very opposed or very for them? Anyone else kind of on the fence, like me? I'm curious, so please don't be afraid to share in the comments (in a respectful manner, of course!).

P.S. I didn't quite know how to fit this in to this post, but I wanted to share some of my feelings today about Ellie's health. A strange thing happened after we were driving home from the hospital after she had her blood test. Suddenly I just got all teared up and emotional and couldn't quite figure out why. I think it was probably because it suddenly hit me again -Having her get her blood taken today just brought to mind the fact that although we've been able to live a pretty normal life since Christmas (the last time she was hospitalized), her blood is still not "normal." (at least as far as we know - maybe this test will be different!). Some days it feels as though it was just yesterday that I was crying 90% of the time, unable to eat or sleep, wondering if our daughter had leukemia, being told at first she probably didn't and then being told she probably did. Other days, it feels like that nightmare was just that - a nightmare, a bad dream, and I find myself wondering, "Did that really happen? Did she really have a bone marrow test? Did we really hear that the news was very bad and lived one week believing our child probably had leukemia?" Oh how my heart goes out to those families who are really and truly dealing with a child with a terminal or serious illness. Since Christmas, most days I've been able to "forget" about her neutropenia. The only times I give it much thought is when we go out or I notice sick people. This has been such a blessing - living a pretty normal life for the most part. But today, a teeny-tiny bit of that anxiety has crept up on me again. The anxiety and nervousness of waiting for test results and the phone call from the doctor. The praying for good results, or at the very least, not worse results, feeling like I can't get anything done until I find out the results. It's a strange feeling again, and truthfully, I don't really like it.

Catching Up

There are many things I want to blog about in the next few weeks. I have lots of delicious recipes with pictures to share. Plus, I'd like to write a post summing up the past year (kind of an anonymous Christmas letter). There has been quite a bit of excitement around our household this past week.

In the past week...

On Dec. 23, we took Ellie to the hospital with a fever
.
On Christmas Eve, Ellie was hospitalized. She had to get poked 4 times in 3 1/2 days (poor girl!)

On Christmas Day, we were allowed to leave the hospital on a pass and had Christmas with my husband's family

On Boxing Day, we had to return to the hospital for more blood tests and to see the doctor again; she was discharged in the afternoon, so we headed to my parent's house for Christmas. (We enjoyed their hot tub...sooo nice!)

On December 29, we decided to buy flooring to redo the flooring in our entire upstairs. The carpet is pretty worn and the linoleum in our kitchen is in need of replacing, too. Although we would have preferred hardwood, we just couldn't pass up a fabulous deal on laminate flooring from our favourite store, which costs WAY less. Now, we have A LOT of work to do in the next year! (Yikes! That part is really scaring me.)

On December 30 (yesterday), we had some potty training success! Yay! I'm just casually starting training as Bittles is showing interest and understands "things" :-).

New Year's Eve: We probably won't be heading out to any big get-together's tonight, unfortunately. I'm pretty disappointed about that, but somehow I have to realize that things have changed around here and I need to be content no matter the circumstance. Part of me still hasn't accepted that yet as I really miss getting together with people and going out and about pretty much whenever. Even though I am definitely a home-body, it's just hard knowing we can't do the things we used to do quite so easily. (I would LOVE to play some games and such, but big get-together's aren't the best idea with Little Bittle's neutropenia, especially since her immune system is even lower now that she's fighting off a cold. If she hadn't just been in the hospital, perhaps we would venture out somewhere. But, she just got out of the hospital - we'd like it to stay that way for awhile! )

And tomorrow I trade my bread for a....rice cracker? I am so not looking forward to that...

Happy New Year!

Christmas in the Hospital

On Christmas Eve, Ellie still had a fever and it looked like she also was starting to get a rash. So, we decided to take her back to the hospital, where the pediatrician on call admitted her for the night.

That was officially the.worst.night.ever.

Well..maybe I should take that back. It wasn't the worst night ever, as in, I was scared that something serious would happen to her. I've had worst nights, emotionally. Physically, however, it definitely takes the cake.

It was the worst night ever in terms of physical exhaustion. Ellie did not sleep at all. She also hadn't slept at all the night before that, which really didn't help. She refused to go to anyone except her Mama, and besides that, she did not want me to sit! If I sat, she screamed and screamed and screamed. So, I stood. All night long. As in, from about 8 p.m. to 6 a.m. I thought my legs and arms were going to fall off. In that time, there was about 30 minutes where I was able to sit down without having her scream. I was in tears holding a screaming, writhing baby for most of the night, praying for the strength to make it to the morning. Finally at about 6 a.m. she crashed for 1 hour with me on the hospital bed. In the morning, my husband came to provide me with some relief. I went home while he stayed with her, and I honestly do not remember even going to bed. That's how tired I was. 2 1/2 hours later, I felt like a new person.

On Christmas day, we got out of the hospital on a pass since her fever seemed to be gone. That was very nice! We were able to spend time with my husband's family and have her home for the night. Another terrible, awful, exhausting night. This time we were up until 4:30 a.m. with a screaming, writhing, baby. Finally, I gave up and thankfully she did too and crashed with me on the couch.

On the 26th we had to go back to the hospital so she could get more blood work done and see the doctor again. Her blood work came back about the same again ( .1 neutrophils) and low CRP (indication of inflammation), so the doctor was fairly confident it is just viral. He put her on some antibiotics (more for the prevention of bacterial infection while she fights the virus) and discharged her. We were able to visit my family for the day and even stayed the night, since Ellie fell asleep and we didn't dare wake her up to bring her home! She actually had a fairly decent night, only waking up for about an hour and a half in the middle of the night.

Now, we are home. I'm still very, very tired. Ellie is starting to cough now and has a runny nose. She also has another tooth poking through. She refuses to eat (she hasn't eaten anything for about 4 full days now), which is hard to watch. I'm still a bit worried about her, but as long as whatever she had doesn't develop into a bacterial infection (such as pneumonia), I think she'll be fine.

I was so tired when we were in the hospital that I didn't even get a picture of her spending Christmas in the hospital. Oh well! Probably something she'd rather not remember, anyway.

Extra Cuddles

We had a bit of a rough night last night with Ellie's fever spiking pretty high in the night (40.1C), which is around 104 degrees F I think. Thankfully, the tylenol brought the fever down pretty quickly. This morning, she is in pretty good spirits, playing and giggling at times (with a raspy throat!). She still has a fever and refuses to eat anything, but she's drinking quite a bit still. So far we've been able to keep the fever under control for the most part. She was up most of the night, but this morning, she was super cuddly and brought me her blanket and stuffed giraffe and cuddled with me. Eventually we both fell asleep on the couch, which gave me some much-needed rest, too. Plus, I enjoyed the extra cuddles from my little sweetie :-). I'm nervous about her having the fever being neutropenic, but I guess time will tell if it's viral or bacterial. So far, she doesn't seem a whole lot worse than yesterday (other than her fever being very high in the night). I wish I would have been more specific about asking the doctor when to bring her in. He did say that if she got worse to bring her in right away and not to hesitate, but I'm not sure how long I should wait if things don't really get worse but she still has the fever. I am thinking that if she still has the fever after 3 full days, even if she doesn't seem worse symptom-wise, then I'll probably bring her in again.

Trip to the E.R.: A Little Bittles Update

Just another crazy day in our household, which is almost starting to become the norm! This morning I woke up, excited that finally today it looked like Ellie would be able to go to her first big family get together since her first birthday, which we managed to celebrate right before she got sick. Since September, she has had to miss birthdays, Thanksgiving, and much more. (Not that we didn't have family things at our house with our own little family...but she/we have had to miss a lot of events since she's been severely neutropenic.)

I noticed that she didn't want to eat very much for breakfast this morning, and then when I put her down for her nap, she was very cranky. After leaving her in her crib for a little while, I decided to go get her since she doesn't always have a morning nap anymore. However, when I picked her up, she was still very cranky and I noticed that she felt very warm. I knew right away she had a fever. Mothers just know these things.(As a side note, I always wondered as a kid how my Mom could feel our foreheads and tell if we had a fever and approximately how high it was. Now, being a Mom myself, I have learned I can pretty accurately tell how high her fever is by feeling her forehead.)

So, I got the thermometer out and, sure enough, she had a fever of about 39 C (about 102 F). I waited about half an hour and then tried to feed her some lunch, which she did not eat at all. Her fever seemed to come down a bit and then it would go back up. I called my husband at work, and we decided that since she had a fever of over 38.5 C and was cranky and not eating, that we needed to take her to the hospital for a blood count, as the doctor had instructed us. Normally, things like this are not a big deal, but with her being neutropenic, a fever is always a lot more alarming with her than with a normally healthy child. I brought the febrile management plan along that our pediatrician had written up before he went on holidays, just in case she got sick while he was gone. Thankfully at the E.R. we were able to see an excellent doctor, who spoke with the pediatrician on call, another excellent doctor.

She got a complete blood count down, blood culture, CRP, and a couple urine tests. Her tonsils are swollen, so she is definitely sick with something. Her neutrophils came back at .1, which is pretty much zero. More concerning is that her complete white blood cell count was only 3.5, which is quite a bit below normal, too. The pediatrician on call decided that we would not start her on antibiotics yet, but rather we could go home on the condition that we watch her very closely and come in right away if she gets worse. He told me normally he would have admitted her, but since we already are aware of the problem, we could go home as long as we kept a close eye on her and brought her in at the first sign of worsening symptoms.

So, for now, we are at home. My sister came over for a couple hours to babysit so that my husband and I could go to our family Christmas gathering since she was pretty content and ate her supper this evening. We are keeping a very close eye on her and praying that this is just a virus that will quickly pass. I am concerned about her low total white blood count, which is the lowest it's been by quite a bit. One thing that is good is that today we found out (after many phone calls) that her penicillin allergy test came back negative. This means there is a chance she is not allergic to penicillin.

Please pray for wisdom for the doctors (determining whether or not to put her on an antibiotic) and for Ellie's healing. Pray this is just a virus that will pass quickly and not turn into something more serious.

The Diagnosis...I Think

First of all...Praise the Lord! Little Bittles does not have leukemia (though on first glance, the doctor thought it was leukemia). The pediatric hematologist (doctor specializing in children's blood) phoned us yesterday to discuss our daughter's bone marrow test results. I will do my best to explain this all now, although I'm pretty sure I don't fully understand all the medical stuff myself. Thank you again for all your prayers and your continued prayers for our daughter's protection from infection and complete and total healing.

The Diagnosis:
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.

Treatment:
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

Giving thanks,

Meet "Little Bittles"

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'm Feeling Better - Praise God!

Well I think it's about time for some good news! I am feeling MUCH better - Praise the Lord! On Friday night I was still having a couple of, what I refer to as, "attacks" where I am in tears because of the pain in my legs and then my hands get this itchy/painful sensation and turn all blotchy. My stomach was also bothering me quite a bit still on Friday and my energy was not so great. Then, Saturday morning I woke up and thought, "Hmmm..I feel pretty good today." I was hesitant at first because I thought that maybe I was just having a good day. However, yesterday and now today have both been good days too, with virtually no pain and much more energy, so I'm thinking now that I'm healed. I still do have a few of those lumps on my legs, but I think they are shrinking. My heart rate has been much better, which I'm not sure if due to the medication I'm on or to the fact that I'm better. Whatever I am healed from, I do not know, but for now I'm extremely thankful to be feeling pretty much like my usual self, physically.

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!

Fear

I struggle with whether or not I should be this honest and type out all my feelings for the world to read, but the truth is, I'm a Christian saved by grace who still struggles. I still sin. The power of sin is broken, but I still sin. I'm definitely not perfect, and I really don't want to pretend to be someone I'm not. I don't want to be fake and pretend I've always got my act together in the midst of the most difficult time I've ever been through when the truth is I do not have it all together all the time. Not even close.

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.

Assist / A Cyst

Well I'll just start off by being honest and tell you that today started off as a pretty crummy (or should that be "crumb-y"?) day. However, in the midst of much crumminess, some of those crumbs turned out to be rather sweet, so stay with me here.

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.
  

Hmm...as I type this out, I am watching Dr. Oz talk about cancer-proofing your life (figured it was probably worth watching considering all my issues. Ha!) He just mentioned beets. I love beets. I'm going to go get me some beets - some cancer-fighting, cancer-preventing beets. Hm...coffee reduces cancer risk, too. Nice! Oh, and open windows are better than closed? Well, I'm outta luck there considering it feels like -20 C with the windchill today. Well, I'm off to read my Bible, and then I think if I feel well enough I might tidy up the house a bit so that I can truly relax and rest (hopefully!) just a little bit this evening.

Summary of the last 2 Days

In the last 48 hours...

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)

Bad Results and More Waiting

First...the good news (maybe, more like the Praise News! :-)

• 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.

Home For Now

Ah....home...my favourite place to be. Now if only I could be back to my normal self (vacuuming, bathroom-cleaning, and cooking included) again. Much to my surprise I got discharged from the hospital this afternoon. The main reason for my discharge was because the doctor wanted me to be able to go up for our daughter's bone marrow test. However, because my echocardiogram is being scheduled for tomorrow, I wasn't able to go up anyway. My heart rate is still very high on occasion and my blood pressure low, but other than that, I'm managing okay. So, for now, I will enjoy my own bed while I can! I typed out a long-winded post last night on a different computer, but I think I'll just type out what I can think of right now to catch you all up to speed on the latest craziness in our life.

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 :-)

I'm in the Hospital

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.