Tuesday, September 29, 2009

Waiting Game

According to Shelley today went fine. Abbey's temp is hovering around 99, and the doctors no longer consider her to have a fever. We are glad about that, but obviously we'd like to see her temp come back to normal. Basically what is going on now is a waiting game. The doctors have said that they will keep Abbey in the hospital for the next few days just to monitor her and to see if the blood culture has any signs of a bacterial infection. This is normal procedure and we've gone through this same waiting game before. We are trusting in God that there is not a bacterial infection and that this is just a cold-type virus that she needs to kick to the curb.
As usual Abbey continues to amaze us with the strength and mercy that God gives her. She is in good spirits and almost sounds as if she's having fun... if that's possible in the hospital. Please also pray for Shelley. She is 36 weeks pregnant and coming down to the wire here with our baby boy. I know it's tough for her to be away from our home and her 3 dudes! Thank you all for your words of encouragement and prayers.

Abbey Update

From Jim.
For the last couple of days Abbey has showed signs of a cold coming on. It started Saturday when she woke up, and continued into yesterday. Shelley was, as usual, on top of Abbey's temperature and was VERY closely monitoring it. Her temp. was hovering in the high 99's, but never hit that magic number of 100.4... until yesterday around dinner time. After conferring with the doctors, Shelley took Abbey to the ER last night. When she got there, her temp. was 101. Another key number is Abbey's ANC (Absolute Neutraphil Count)... which I'm sure many of you have heard that before. If Abbey's ANC is below 750, I think, then they consider her to be neutropenic and she is admitted into the hospital. Well, her ANC was 60!!! I think that's the lowest it's ever been. So, to make a long story short, Abbey was admitted into Rainbow 2 last night. She is receiving an antibiotic and will be monitored closely. Once again we covet your prayers and I will update on here when I get a chance later today. Thanks.

Thursday, September 24, 2009

Lovenox Shots

Two weeks from tomorrow (October 9th) Abbey will have another MRI of her head to see if the blood clot is completely gone in her brain. It's hard to believe that she has been on the shots, two times a day for a little shy of 6 months. We are more than ready to be done with them. Her little arms and legs look so sore from them and the bruising in those areas looks painful. Please be praying for the spot in her brain where the clot was to be completely normal. At her last MRI, three months ago they saw some residue of the clot still so that needs to be completely gone for us to be able to stop the shots.

Abbey's doctor told us that 90% of the time, by six months there is usually no sign of the clot, but 10% of the kids need to continue the shots past six months. Please pray that Abbey is in that 90% of kids and that there is no question about it... that it is gone!

After she gets her shots, we dispose of them in a large old bleach container. The picture above is only one of the many containers that we've filled with old shots. We so want this to be done for our girl.

I also wanted to mention that the 1 year anniversary of Abbey being diagnosed is coming up in one short week. It's so hard to believe that we've been in this battle for a whole year and words can't express the emotions that flood our minds as we think about how our lives have changed over this past year. We have come so far and oh how I would never want to go back. We are thankful that we are where we are in her treatment and can only look ahead to her being completely healed of this disease. We still have a long road ahead, but know that we will get there.

I am putting together a slide show of our journey that I will share on here of this past year. It will be an emotional week as we have much to celebrate and also much to mourn as our lives were forever changed on October 2nd. Please continue to ultimately pray for Abbey's body to be completely healed. Pray that not only will she never relapse with leukemia, but that she will never get any other sort of cancer as a result from the many chemo and drugs that she is on and that she will live a long, healthy life.

Thank you for continuing to flood Heaven with our Abbey's name. We will need prayers more than ever these next couple weeks as the reality of this past year is so real right now.

As I look back at pictures from just a few short months ago (above), the tears flow as it's amazing how much she has gone through. It is hard to look back, yet good. Those hard times break our hearts, but also show us how far we've come. We know God will continue to carry us through every day and feel confident that Abbey is ultimately going to be healed so we can spend a lifetime with her.
And a picture of her at this point in our journey.... Here she is being a normal four year old, playing with her cousin Grace and friend Chloe. She has come such a long way and as a family we will continue to put one foot in front of the other and keep looking ahead. I know God has great things in store for this girl and as He shapes our hearts through this time we will continue to walk with Him and trust His will for our lives.

James 1: 2-4

Consider it pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance. Perseverance must finish its work so that you may be mature and complete not lacking anything.

Saturday, September 19, 2009

Umbilical Cord Banking

I am 34 weeks pregnant and we are getting very excited for our new baby boy to be here! Seeing my sisters new baby and watching our kids hold him and love on him makes us so excited to have our own. We finally settled on a name last week, but I think we will wait to share it with you all :) We had picked another name early in my pregnancy, but the one night, after talking about it for a long time Jim finally said that he really didn't like the name that we had initially picked, so we started from square one and came up with something else. We are both excited about his name and feel like it fits so well with the rest of our bunch :)

Something that I thought would be really cool to share with you all is that we are going to be banking this babies umbilical cord blood. We've never done this before, but with our situation with Abbey it was a no brainer. A couple months after Abbey was diagnosed, a friend of mine gave me an article about the benefits of umbilical cord banking and all the possibilities of a siblings cord blood helping to treat an ill sibling. Right after we read about it, we talked to Abbey's doctors about it, to see if this would be something that could be helpful to our Abbey (at the time we weren't expecting yet). They explained to us that Abbey is doing very beautifully in her treatment right now and the protocol that they are following will not require a bone marrow transplant (praise God!). A matching siblings umbilical cord blood could be used in the event of a bone marrow transplant and the only way that would be needed is if Abbey would ever have a relapse. We feel confident that Abbey will continue to do beautifully in her treatment and we pray fervently that relapse will never be something that we will have to go through, but also know that as parents we will do ANYTHING for our daughter.

Relapse for children with ALL (acute lymphocytic leukemia) which is what Abbey has is rare, but does happen. Since day one we have felt a peace about Abbey's diagnosis and trust with all our hearts that God is going to completely heal her and that she will live a normal, long, healthy life. We also know that we can't see into the future and that as parents we will do anything and everything that we can. So after talking about the slim possibility that a new siblings umbilical cord could help down the road if ever needed, we decided immediately that we would ask God to bless us with another baby. And I should mention that we've always wanted a big family so it was an easy decision.

Right after Abbey was diagnosed and our lives were changed in an instant, it definitely went through our minds that maybe we shouldn't add any more kids to this hard time that was ahead of us. But after praying about it and feeling so sure that our family wasn't complete, we asked God for a new baby in His timing. Just a few short weeks later I found out I was pregnant :) And I have to tell you what an amazing blessing this little guy has been to us already. This pregnancy has been so wonderful for me. Each time I feel him move and think about God giving us another one, my heart swells with joy. We see things in a new light since Abbey's diagnosis and have experienced God in a whole new way. Maybe that's why this new life has been so amazing to me, but we feel blessed to be adding a new baby to our lives and comforted knowing that we could possibly be doing something that could help Abbey in the future.

So the next really cool part to this story is that I did some research and found a company that will bank our babies cord blood for free since we have a child with a life threatening illness. No matter what it cost, we knew we were going to do this, but feel very blessed that they do this for us and other families who already have a lot of their plates with an ill child. It usually costs about $1800 up front and then there is a yearly fee that you pay. We are thankful to have the security of having this saved, and the blessing of us not having to pay for it.

A couple other things that I wanted to mention is that the doctors made if very clear from day one that another one of our children being diagnosed with leukemia is as rare as any other child in the world getting it. It isn't something that runs in our family and they told is that it is as rare as getting hit by lightning. We don't believe in chance though and know that it wasn't by chance that Abbey got leukemia. We believe in a sovreign God who has a perfect plan for us in this life. We know things don't slip through His fingers and believe and trust that He is in control of ALL things. And we have trusted and loved Him since the day we found out about her devastating diagnosis. I am not saying it has been easy by any means, but we have seen God work in our lives in many ways, have witnessed many miracles along the way and know that she has been spared many horrible side effects. For that we are thankful. And the other thing you may be wondering... The statistics for a siblings cord blood to be an exact match for Abbey is between 50% - 75%. I joke with Jim that we will just keep having babies until we get a match for her. We'll see :)

Thank you for continuing to love us through our journey. If you have any questions about this post, please feel free to ask. Umbilical cord banking can be used for many different diseases, both for the child's whose cord was saved and siblings. And I was so thankful when it was brought to my attention and would be more than happy to share what we've learned in our research.

And lastly, I wanted to end with a picture of Abbey and her new baby cousin Tommy. They came over the other day and Abbey loved holding him. Look at how long her hair is getting :) It is so cute and so wonderful to be able to brush her hair after her baths and run my fingers through it!

Sunday, September 13, 2009

Abbey Update

Abbey is doing good. Her cold was very mild and her body fought this cold off much better than the last one. We were at clinic Friday for her monthly dose of chemo through her port and for an overall check up. Her numbers looked pretty good. They were lower than they were after they went way up, but still in the normal range that they want them to be. She is right now on her 5 days of steroids for the month so I always can't wait for them to be done. She is handling them well, but they are still one of the yuckiest parts of her treatment.

The last couple months, we've noticed some side effects from her vincristine (which is the chemo that she gets in her port once a month). It is common for this chemo to cause her reflexes to be off some and she is having a hard time picking up the front of her feet when she walks. Today she fell two times when she was running because she tripped over her toes. It's very sad for us to see her struggling to run and although it doesn't hurt her, it just feels weird for her. It will wear off over the next week and it isn't a lasting effect, but one that is very frustrating when she's trying to be a normal 4 year old.

Her MRI is scheduled for October 9th to see if the residue from the clot in her brain is completely gone. Please pray that there is no sign of it and that they will tell us to stop her two shots a day. We are sooo ready to be done with them! A quick story about yesterday... Yesterday morning was Jacob and Micah's well check appointments (Jacob's 6 year and Micah's 18 month) and they both had to get the flu shot and Micah a couple others. Jim was working so I took all the kids to the appointment. Well when Jacob found out he was getting a shot he got upset and started crying. I then looked over at Abbey and she too was crying. I assured her that she wasn't getting any shots and she said "I know Mommy. I just don't want Jacob and Micah to have to get them." She is so compassionate and I love her heart. This poor girl has been getting 2 shots everyday for the last five months and she was so upset for her brothers.

We have been really careful again with taking her in public much as cold and flu season is right around the corner. We are trying to do just outside activities when we leave the house. Today Jim worked and I took the kids to a fall festival. There were pony rides, a hay ride, a hay maze, crafts for the kids and a petting zoo. There weren't that many people there so they got to ride the ponies several times and there was no wait for anything. I took this picture of the kids while we were there today so I thought I'd share :)

Hope you all had a great weekend and thanks for checking in :)

Jacob, Minus a Tooth!!

Jacob lost his first tooth this week! It had been loose for at least a month and was seriously hanging by a hair the day that it fell out. We were laughing at how long it was hanging on, but there was no way Jacob wanted to pull it out so we just let it go and knew eventually it had to come out. Thursday, when I picked him up from school he had a plastic tooth container hanging around his neck and a sticker on his shirt that said "I lost a tooth". He had the biggest smile on his face when he saw me and was so excited to tell me that it finally came out. At recess he said he felt something in his mouth and when he took it out, it was his tooth! His teacher made a big deal about it and he was the first in his class to loose a tooth at school so he got his name on a chart and to bring home a tooth necklace and sticker. His smile is so cute with his missing tooth (although the next one is already coming in). I can't believe our oldest is already loosing teeth!! He's getting so big :)

And a quick update about school.... He is doing much better. He has been so brave each morning as he walks into school and although he's saying here and there that he misses being home and that it's a long day, he seems to be enjoying it and getting into the swing of things. Thanks for praying for his transition. It has been really neat to see all that he is learning already. Weekends can't come soon enough at this point for me as I so miss him being home, but we are so thankful that he is adjusting and liking it more :)

You can see the little space on the bottom :) And a side note about the hat.... Last week they were learning about Police Officers and Jim went in the one morning in his uniform and talked to the kids. They then all got to go out and see his police car, which was pretty cool! Jacob was very proud :)

Congratulations Kopecs and Cherrys!

On September 10th, my sister Stacey and her husband Joey welcomed their new baby, Thomas Jefferson into the world. He weighed in at 6 lbs. 2 ozs. and was 19 3/4 inches long. Stacey and Joey have two other kids, Gracie who will be 4 next week and Joey who is 2. They came home from the hospital today and are doing great! We were able to go up to the hospital a couple times to see them and are so excited for their beautiful, growing family :)

My sister Stacey, niece (and proud big sister) Gracie and baby Thomas.

Abbey loved getting to hold Thomas in the hospital. She is very excited for her soon coming, new baby brother!

And on September 9th (about 12 hours before my sister), my dear friend Samua and her husband JeRod had their baby boy, Elijah Micah. He weighed 6 lbs. 3 ozs. The very crazy thing is that Stacey and Samua had the very same due date (Sept. 29th) and they both had their babies three weeks early, within 12 hours of each other. Samua was hospitalized for three weeks before having their little guy as she had placenta previa. Please pray for Eli as they are keeping him a little longer in the hospital. Samua and JeRod have three other children so their family has been living under two different roofs for almost a month now. Their faith has been amazing as they've gone through this trying time, yet they are very ready to be home as a family of 6 so please pray for that to happen very soon.

Congratulations Kopecs and Cherrys!! We love you all dearly!

Sunday, September 6, 2009

No More Fever :)

Sorry I didn't get a chance to post yesterday... Abbey's fever finally broke yesterday afternoon. Her blood cultures both came back negative as did the strep throat test and other nose test that tested for many different viruses. We aren't sure what caused the fever, but are thankful that it's gone. There is a cold going around our house right now and Abbey does seem to have it, but so far it isn't bad. Please pray that her body would be able to fight this and that it doesn't turn into a sinus infection or something else that would require antibiotics. Last time she had a cold it turned into a sinus infection and then after being on the antibiotics her immunity dropped extremely low. We are praying against that as she fights this sickness. Thanks for checking in :)

Thursday, September 3, 2009

Go Away Fever!

Once again this morning, Abbey woke up with a fever. The second she woke up and I kissed her head, I knew we weren't past this bump in the road yet. Since Abbey had her antibiotic yesterday at 4p.m. she was covered for 24 hours with that just in case this does end up being a bacterial infection in her blood. I talked to her nurse soon after I knew she was still running a fever and she said we didn't need to be there today until around 2:30ish to make sure she could get the next antibiotic in her by 4p.m. today.

Once we got there they decided they wanted to do a strep throat test and some nose mucus test to see if they can see if she has some sort of infection that they can pinpoint. Up to that point, Abbey had no cold symptoms so I really didn't think it could be anything like that. When they did her exam they said her throat looked a little red, but she said that her throat didn't hurt at all.

The tests were not pleasant and Abbey was very scared to have to get her throat "tickled" by the long q-tip and the nose test done as they had to put a tube up her nose, squirt some saline up there and suction out whatever they could. We had to hold her down while the nurse practitioner did the tests. It was sad and poor Abbey was soaking with sweat when it was all done due to her crying so hard. She recovered quickly, but kept telling me that it hurt really bad. Poor girl :( We will get the results on those tests tomorrow.

Nothing had grown in her culture at the 24 hour mark so they will continue to watch it for two more days. Tonight she started having some cold symptoms like a little bit of congestion and runny nose. This fever may be something to do with that or something to do with the throwing up the other day... who knows. We just want it to go away and not come back. We are praying that when she wakes up she will be fever free so we can move past this. Once again, tomorrow we will be in close contact with her nurse and doctor and depending on what is going on with her temperature, that will decide whether or not we have to go back to the clinic for a third day in a row. Abbey has been a trooper and even after the traumatic tests today, she still told me that she liked going to clinic. Please continue praying with us that tomorrow her temp would be back to normal. We will let you know....

Wednesday, September 2, 2009

Quick Abbey Update

Soon after I posted earlier today, I again took Abbey's temperature and it had gone up to 101.2. I called her nurse and she told me that we needed to bring her right in. When we got there they drew her labs to see where her numbers were. All of her numbers looked great so that was a relief because if she was neutrapenic (low numbers) we would have been spending at least one night there. Her heart rate was high and her fever was definitely there so they first gave her some fluids, then gave her an antibiotic through her port. They took a blood culture which they will now watch for a few days to see if anything grows. Although they are thinking this is a viral thing, they always have to treat it as if it's a bacterial infection in her blood because that can be very serious. We will not know if it's a bacterial infection until her cultures come back at around 48 hours, so please pray that nothing grows in the culture. Tomorrow we will again be watching her temperature closely. If she continues to run a fever we will have to take her back tomorrow afternoon for her to get another antibiotic to cover her in case something does grow in her culture. If her fever is gone and she seems to be better they will not need to do the extra antibiotic. Thanks so much for your comments on my last post. They were so uplifting to me as I was able to read them tonight after a long day. I'll let you know tomorrow how she's doing... Thanks!

Rocky Week

We went from a great week last week and a wonderful weekend as a family to some rocky days this week. As I mentioned in my last post, Jacob did great his first week of school, so Monday morning when I pulled in the parking lot and he started crying, I was surprised to say the least. Jacob has always been our independent, social kid who has never cried or got upset when going to his class at church, to preschool or to a friends house for the day. These last three days, when I dropped him off he has had a very hard time. He started telling us this week that the day at school is too long and that he misses being home. Yesterday as he cried and kept asking me to take him home, my heart was breaking. I thought I broke my cell phone from all the tears that seeped into it on my ride home while talking to Jim (it eventually dried out and is working fine again).

We know this is a huge change for him (as it is for us) for him to be in school 5 days a week. We truly still feel like we made the right choice with the school that we picked and putting him in this year, but we know that it is going to take time for him to get used to it. Jacob definitely doesn't like change, but as time goes on and he knows more of what to expect, we think it will get easier for him.

His teacher has been wonderful. Monday and Tuesday when I picked him up he was fine and she said he did great all day. She told me that she has been talking to him during the day about what is upsetting him so much in the morning and then she has been praying with him, for God to help him to be brave and give him strength. He told her and us that when he thinks about me (mommy) he cries because he misses me. It's heartbreaking :( Jacob has been through so much this past year with everything with Abbey and sometimes it's hard to know how he is dealing with it all deep down inside. Jacob is pretty open with us and is a good communicator, but there are times where we feel like he doesn't talk too much about our situation with Abbey and how our lives changed in an instant. We are trying not to over analize this, but also want to do everything we can to help with him with this transition to school and we so want to do what's best for him. Please pray for him and us as this has been a hard week.

The other thing that's going on right now is that Abbey hasn't been feeling good these last couple days. Tuesday morning she woke up at 5a.m. and was throwing up. At that point she wasn't running a fever, but about mid-day yesterday her temperature started going up. It has been holding pretty steady around 99, but has not yet hit 100.4, which is the temperature where we have to take her to the hospital. I have been in close contact with her nurse and doctor and will be taking it again today at 12:30 to see where it is. At that point they will formulate a plan on what we should do. If her fever goes up in the middle of the night then we will have to go through the ER and if you've been following our blog for long, you know how very much we do not want to have to do that. It is so much easier to be able to take her to the clinic during regular business hours because we are all more comfortable there and they deal with cancer kids all day so whatever the issue, it is second nature to them. Not so much in the ER. Please pray that her temp would come down to normal. There's nothing like a fever coming on and our emotions quickly being all over the place. It is a definite reminder of this battle that we continue to fight with our baby girl. Thank you for loving us through this. We feel blessed to have many praying us through this time in our lives.