Sunday, March 9, 2008

Sixteen Months, Part 2 -or- In the Hospital -or- Chemo, Part 1

When I wrote my last post I thought everything was okay.  I was going on a simple blog break and Rainer was a healthy boy who liked to be carried and who had been having a lot of cranky teething episodes lately.  There were some more things going on with Rainer that we were definitely keeping our eyes on, but nothing we were really nervous about.  He'd been having a lot of low grade fevers since January (even though he'd never been sick with a cold or fever before), he wasn't eating much, even though he used to be our fabulous eater, his color seemed off, sort of pale or yellow, but we questioned that--"is he really yellow, or is it the lighting in here?", he had a few small bruises--and more recently he was having some puffiness around his eyes and sometimes his mouth.  Ken took him to the doctor the week before last and the doctor said he's been seeing a lot of kids with the same symptoms and he probably had a virus, his ears looked fine, just take him home.  But the following week, on Thursday (the 28th of February) Rainer stopped walking.  Poor little guy just screamed when I put him on his feet.  He flopped himself down, or if he tried to walk he'd take a step or two then reach out for you or lean against the couch or the coffee table.  His legs were obviously hurting.  I stayed home with him that day, and we took him back to the doctor that afternoon.  The doctor was concerned and labs were ordered.  After the appointment we headed to the lab to have his blood drawn, and then that evening we went to Subway for our usual Thursday night sandwiches.  As we were finishing our meal I barely heard my phone ring--I assumed it was Faith and answered it.  It was the doctor.  He said little Rainer's lab results were very concerning and we should go to the hospital in Santa Barbara right away and see the pediatric hematologist.

Our sweet baby has leukemia.  We've been in the hospital ever since (about a week and a half so far).  We are shocked and sad but mostly very very hopeful.  He has the most common form of childhood leukemia, called ALL.  The good news is that it is curable for 85-90% of the patients. What amazing and wonderful news!  We are grateful that our little boy has skilled and caring doctors and that he is in this particular hospital which is so very good (he was here before at age 7 weeks when he had his hernia repair and we were impressed then too).

The emotions of having your baby diagnosed with cancer are overwhelming and we are still working though so many things.  What we know so far is that he has ALL and it is curable for most children.  He'll be in treatment for three years, but this will probably be his only long hospital admission.  He'll mostly  be treated on an outpatient basis but here at this same hospital.  He'll need to avoid crowds so as not to get an infection when he is immunosuppressed.  He won't be back to daycare for the rest of the year.  He'll lose his hair.  We plan to follow the exact protocol our doctor recommends and do everything possible to nurture Rainer's health,  protect him from infection, and give him a happy childhood.

That's it.  I'm not going to freak out checking a bunch of online sources or message boards.  He has started his chemo and is already feeling so much better; his color has returned and he is standing in the crib more (still not walking at all).  He's a total little trooper and has charmed all the nurses and he takes his meds like a champ.  We are here until Wednesday for sure then a new chapter begins when we take him home.

I would have posted sooner but I've barely left the hospital and this is the first I could lay my hands on a reliable laptop (thanks, James!  You rock).  I will post more when we get home from the hospital and a picture too.  Meanwhile, please send prayers and positive vibes Rainer's way.

56 comments:

jessi said...

I am so sorry to hear your news. I'll definitely keep Rainer and your family in my thoughts and prayers!

AnnieB said...

awh MaryBeth I am so sorry to hear this...you sound like you are managing to deal with it and stay positive somehow which is amazing and a testament to your strength. I am not the praying sort normally but will send my wishes upstairs just in case someone will listen. In the meantime I send positive vibes and much love to you and your family. Thinking of you all.

XXX

Carrie said...

Anna says you are a fantastic person and blogger. So glad to talk to you and see your blog again. All our love.

amy t sharp said...

Rainer is in our prayers. I left you an email.

Sharon said...

Mary Beth, all the best for you and your family. You guys are in my thoughts. I agree with annieb, your optimism and strength are inspiring. You're amazing. {{HUGS}}

dottycookie said...

I am so sorry to hear this, but I send healing wishes for Rainer and all of you and hope he continues to make good progress. I think you're very wise not to go googling - you can drive yourself half mad that way. Thinking of you.

Suzanne said...

Mary Beth--I am just crying here for you but I believe God is great and we are all going to pray for little Rainer--his total health restoration and strengh and for peace for you and the rest of the family. IF you can , keep us updated. You are such a special Mama:-)

Amy said...

Oh that poor baby. He is at such a young age that he does not understand but also at an age that he wont remember and boy do these little ones bounce back from things quickly. He will be fine. Prayers and good thoughts will definitly be sent your way from all over I am certain. Stay positive and do keep away from message boards and what nots...and if you feel the need to NOT be positive--- just type away... we are all here to listen (so to speak)

Sarah and Jack said...

((((Mary Beth)))) What a scary time you have had since you last wrote. You will be in our prayers as you begin your journey.

kirsten + aaron said...

happy thoughts and prayers from me, too.
i'm sorry for the hardship that has come your way, but i'm impressed with your attitude. this will be very important.

Sarah said...

Oh Mary Beth, I am so shocked to hear this about little Rainer. He is lucky to have such a strong and wonderful mama. I will definitely pray for him and for your whole family.

Mystele said...

praying...i love your outlook. hang on to it!

littlegreen said...

You have definitely been in our prayers over the last week, and we are glad to hear an update. We love you so much, and little Rainer too. He is a strong little boy and you are an amazing mother, our hearts and prayers are with you.
love you!!

About Us: said...

MaryBeth,

You and your family are in our prayers. Rainer is such a brave little guy. I agree with the others your optimisim and strength are very inspiring and your love for your son is wonderful. Yes, we all want to google when we have things we want to look up because Google is just what you do, but it can be overwhelming the info that is out there. Sounds like your doctors are great.

Sending you lots of hugs.

(((HUGS)))

Molly

Carrie said...

MaryBeth,
I am so very sorry about what you and your family are going through.
You and your family will have many praying for you.

Alicia said...

I am so sorry to hear this. Your positive attitude will help him tremendously! Keeping you and little Rainer in my thoughts.

PS I just started reading your blog about a month ago. I'm not usually the type to comment, but I couldn't read this and NOT comment!

village mama said...

Prayers from our family to yours.

Laura said...

I don't like this one bit!!! You sound like you are in such a good place right now...staying positive and keeping your focus on your precious child. I'm so happy you are pleased with your doctors and the hospital. I hope you will have the support that you and your husband need.
You are definitely in our prayers!
Thinking of you fellow mother,
Laura

Liz said...

I know I'm a stranger to you, but I love your blog and Ranier is in my heart and prayers that he'll be kept safe and protected.

coffeechris said...

My prayers and great energy are with you and your sweet boy. Your blog is one of the first I ever started ready and one I check daily, thank you. I started ready and my heart is so heavy, with tears in my eyes. Please take good care of him and you.
best,

Chris

Miss L's Craft Room said...

I'm so sorry to hear this...I've never commented on your blog before but read it often. It's one that I truly enjoy. Please know that I will keep all of you in my thoughts. Stay positive.

Hannah said...

Many prayers his way, and yours too. We know what it is like to have an ill child. Our son was born with deformed kidneys and friends of ours little girl was diagnosed with cancer shortly after that. His blog (not depressing) is here:http://pastormarkschilling.wordpress.com/
I'm sure he or his wife could give you sound counsel in the area of wee ones and cancer.

lizziemarie said...

Many healing thoughts and prayers to you and your family.

Lina said...

Oh Mary Beth, you have been in my thoughts since I found out at the weekend. Thinking lots of positive thoughts for you, glad Rainer is being such a trouper. Big hugs.

Lina x

Sarah said...

Mary beth, It was really shocking to hear this news. I am so impressed by how well you are handling it. This past week must have been really tough. My thoughts are with you and I am sending positive energy and healing thoughts to Rainer.

Meg said...

I will keep you and Rainer in my thoughts and prayers.

Polly said...

Positive vibes despatched. I wish you the best possible outcome with this. Love Polly x x x

megan said...

I too am sorry to hear that Rainer is sick. The family down the street little son was diagnosed about the same age as your little guy. They are in remission right now and are doing wonderful. I am impressed with your positive outlook. Your family will be in our prayers.

Roxanne said...

MaryBeth- I popped over to see if you were posting again and I am so shocked to read your news. I am so sorry your family is going through this. I am sending prayers and healing wishes your way.

Susan said...

First of all, I am so sorry. I have been reading your blog for a month or two and was missing your posts. No wonder! I can't imagine what you and your husband are feeling right now.
Second, I am so impressed by your attitude. You're right- Rainer will be FINE and now it's just a matter of getting through the treatment and taking care of him, and you! Keep your head up, and know that Rainer has a new prayer partner in me. I will pray for his health and recovery daily, and for God to support and sustain your entire family through this process.

Psalm 103: 2-4 "2 Praise the LORD, O my soul,and forget not all his benefits-
3 who forgives all your sins
and heals all your diseases,
4 who redeems your life from the pit and crowns you with love and compassion"

amanda said...

Mary Beth--I was just popping in to catch up with your blog when I saw this post about Rainer. I'm so sorry to hear what you and your family are going through. You and Rainer are in my thoughts and prayers during this time of healing.

Jennifer said...

I'm here from Mama on a Mission's blog... just wanted to say that I'm praying for you and for Rainer tonight. I'm SO happy to hear that the success rate is so high. What a rollercoaster.

Blessings,
Jen

Cathy said...

I have never commented, but do read your blog daily. Rainer and your family will be in my family's thoughts and prayers.

driftwood said...

Thinking of you Mary Beth, and sending all my love and best wishes to Rainer for a good recovery. take care xxxxx

Jonah Lisa said...

Oh Mary Beth, I'm so sorry. I'm wishing you peace and comfort and strength as you and your family navigate your way through this.

Gift of Green said...

Mary Beth - Nothing I can say except thinking of you always. You really are part of my day, no matter what. We're with you.

Kate said...

Please know our family, and especially little Rainer, will be in our prayers. Stay strong, your positive spirit is amazing!

C-man and Mama said...

Hang in there Mama! Rainer will be in our thoughts!

Beck said...

I am full of awe at your amazingly uplifting and hopeful attitude. I'll keep Rainer in my prayers and I hope that his treatment goes well, that the cancer goes away forever and that he is very quickly a healthy little boy.

Amy said...

You are an amazing, strong mom. I kept reading and inferring from your tone that everything was going to be ok. Then I read leukemia. Then I read curable. Thank GOD! OH man what a roller coaster. Nearly cried over here. I'll be cheering along remotely.

Florence said...

Mary-beth, I was so very sad to read your post about little Rainer being so poorly. He sounds like he's being amazing though, as do you. How lucky he is to have such strong and positive parents in you and Ken. I will be thinking of you and wish you all continued strength - your attitude is inspirational.

Much love, Florence x

shannon said...

I've been reading your blog for a few months now and it breaks my heart to hear your news. I will be sending all of my best wishes to your family and hoping that your little one is feeling better soon.
Your positive attitude and love will really make a difference in his recovery.

mom go green said...

Rainer really does have one fabulous mom! I know this must be such a tumultuous time. Thankfully, kids are so resilient. I am wishing him the speediest of recoveries. Big hugs to you.

Susan said...

I'm sorry about the bad news about Rainer. I will be praying for him and for you and your family. Stay strong. If you need music to uplift and encourage you check out Michelle Tumes her 2006 self title ablum. http://www.michelletumes.com/music/Listen.asp

Thanks for keeping us updated.

taimarie said...

Oh Mary Beth, my thoughts and prayers will be with you and Rainer and your family. What shocking news, but what a lucky boy to have such a wonderful mama and loving family. I will keep you and Rainer in my thoughts.

Valerie said...

Good thoughts to you and your little one. Take care of you and keep the good attitude- much love coming out to you all.

Mary said...

Mary Beth I have been thinking about Rainer and your family since I read the news. I have your whole family in my thoughts and prayers.

Christy said...

You have such a wonderful outlook on this rather scary situation Mary Beth. Keep holding onto the positive. There is a lot of love and positive thought being sent your way.

Wishing you and your family the best.

Melissa said...

I am just now getting to read your news. I'm so sorry that your baby is going through this. I am praying that Jesus will heal him completely.

vintagechica said...

Oh my friend. I received your comment an popped over quickly to catch up on you and your family. And with tears running down my face, I have to say that it is not me who is brave or strong. It is you sister. I will add your sweet boy to my night prayers tonight.

Preppy Pink Crocodile said...

I am just now reading your blog for the first time and wanted to send my regards. One of my best friends had ALL from age 5-10 and is perfectly healthy now. I was in her wedding in Nov and she is planning a family now. My thoughts and prayers are with you! And if you would like to speak with/email a survivor, just let me know as I am happy to put you in touch with her.

kitt16201 said...

You and Rainer are in my prayers.

Heids said...

I have just come across your blog via Crafty Crow and wanted to say you and your family and especially Rainer are in my prayers.

Heids said...

I have just come across your blog via Crafty Crow and wanted to say you and your family and especially Rainer are in my prayers.

Kelli said...

I am new to your blog. And so sorry to come across these postes. I will be praying for your sweet little boy and you and your family.

crunchy peas said...

Your attitude about this is so inspiring- definitely puts things into perspective for me. Ranier (love his name- I live near that mountain) is quite the little punkin, and I can see how much you love him! I'll pray for not only his healing- but your strength.