Wednesday, April 29, 2009

HOME!!!

this is when we got the news we were going home :)
we are home!!!
it feels so good to be home and out of the hospital. this afternoon the oncologist came in to give us some "preliminary" results. he said that it looks like it is not a "type B" cancer which is the more aggressive so that is great news. they also do not think it is the sarcoid disease. they are now down to a treatable from of lymphoma. the only other option is there is a very small percent it could be a type of rare infection of the lungs. the oncologist is planning on seeing us on weds to go over treatment and to get a plan for the future. we are going from one moment of feeling good about it all, joking around, to the next shedding some tears about what this will look like for our family. he said he will continue to give us as much information he can as he finds out . we feel SOOOO blessed by this oncologist. he has a GREAT bedside manner, is easy going, and puts our heart as ease. so for now we are home, mark is going to take is easy recovering from surgery. we are going to try to enjoy our family and try to not sit and dwell about what could happen in the future.
thank you all for your prayers and support! we will for sure update you all as we hear anything!

out of surgery!!!

so mark is out of surgery and should be on his way up the room any minute! man it is amazing how long a 1hr 20 min procedure feels like. it was harder then i thought watching the love of my life being wheeled in for surgery! i was so glad to see the doctor come out to talk to me in the waiting room.. everything went well, they got plenty of lymph nodes that were abnormal to study. that feels both good and bad.... there is always a piece of you that keep waiting for them to say that this was all a mistake and we can go home and resume normal life.
we are still very hopeful and and praying for quick results so we can get an idea of what is going on his poor body!
thank you all for your prayers and support they make us feel so loved.
if you are reading this feel free to leave a comment ....it is fun to see people from all over the united states praying for you and thinking of us!

Tuesday, April 28, 2009

a birthday to remember!

HAPPY BIRTHDAY MARK!!
WE LOVE YOU!!!
happy birthday babe!
not the way we were planning to celebrate his birthday, but we made the best of it!
breakfast at the hospital with a gift from the hospital gift shop. i got him a lucky bamboo plant i thought it fit perfectly for this birthday!

we had a nice morning talking about everything going on. we talked about how God has blessed us through this whole process! we trust that God will carry us through whatever is ahead of us!
kya came for a visit, she was able to help take care of daddy! she said she wants to be a nurse when she grows up! i think that is a great job :)


daddy and his girls! he is such an amazing daddy, these girls love him sooo much!
the love of my life!! i could not have dreamed up a better husband!

daddy and his ladies! we are the luckiest girls in the world!!
we will never forget this birthday! in so many ways it was such a special day! it was so fun to see people love on mark and let him know what an amazing guy he is!! i hope we never have to spend another one in the hospital, but we still had a great day! i can't wait to celebrate MANY!!!!!! more birthdays to come!

Monday, April 27, 2009

still taking it in....

i thought i would post an update on the situation with mark. many people keep asking how, when & why...all the normal questions to ask in this crazy situation. so here is my best attempt to catch you up on the last 1-2 months :) please keep in mind i am exhausted in every aspect, but will do my best !
about 2 months ago mark started having some joint pain. he said his hips hurt then the next day he said his knees...then i was his shoulder....etc . each day his kept popping motrin to control this pain that was slowly moving through all his joints. he also started noticing some fatigue symptoms. he was just so tired all the time. we attributed all these symptoms to a virus and thought we would just have to give it time. well about a month ago he started running low grade fevers at night and having night sweats. there were a couple times that were so bad i thought i would just have to throw away all of our bedding. at this point i told mark he need to go in. with the fatigue, joint pain, night sweat, weight loss, and dry cough that we needed to figure it out. he headed into our primary care doc office. there they ran some blood tests and again said it was probably just a virus that needed some more time to go away. mark would have good days and bad days... it seemed to be random, but the more he slept and kept hydrated the better he felt.
finally on friday we got the results from the labs. everything came back normal except a little of inflammation on his arthritis panel. we were told to see them back again in a month to recheck how he was and do recheck labs.
on friday afternoon, mark said he had been coughing up some stuff and thought maybe he had a sinus infection or something. we talked about how we would see how he felt this weekend and maybe have him go back to the doctor on monday for some antibiotics. we are supposed to leave may 6th for riviera maya for our anniversary. and we wanted to make sure he was feeling good leaving for the trip.
well on sunday mark and i were working in the yard and mark got extremely fatigued, short of breath, and pale. i urged him to go the urgent care and to just figure out what is going on. he did( very surprising to me) and the doctor there thought it also was most likely a virus and maybe some allergies. right before mark was going to leave the doctor said if mark wanted they could run a chest xray to make sure everything was good. well about 20 min later the doctor came back with a shocked look on his face. he then told mark that he had some spots in his lungs and that he was concerned about what this was. he encouraged us to go to he er and to have a cat scan to get a further diagnosis of what we were looking at. so we headed in and had the cat scan done. we both felt like this was just another silly waste of time and were just waiting to hear that they made a mistake....well instead we got some more doctors in that said they were sorry and to say but it looked like mark has either
sarcoid disease
or
lymphoma....
nice huh......that was about the moment i felt my heart in my stomach and i was trying to pinch myself to wake up from a very bad dream.
we were admitted to the hospital they said for further testing to figure out for sure what is causing this. so today was another cat scan of his abdomen, and more talking with doctors. we have an AMAZING oncologist who feels VERY confident that if this is lymphoma, that mark has a very HIGH CURE RATE!!!! such great news.
so as of now we are going to have some more testing done tomorrow to hopefully get some biopsy's of theses "things" in his lungs and also some of the lymph nodes that are inflamed.
marks bday is tomorrow and the poor guy cannot even eat or drink before the procedure.
right now we are just trying to take it one step at a time. there have been MANY tears shed, bur currently we are feeling strong to fight whatever comes our way!
i love him so much i will fight with EVERYTHING i have to beat whatever is attacking him!
i will continue to update this and my facebook until we have a clear diagnosis for mark.
thank you all for your prayers and thoughts ! we need them!

Wednesday, April 22, 2009

on the road to recovery :)

today kinley went in to have tubes put in her poor ears. the poor girl has had infections the last 5 months and we cannot get this last infection to clear. dr chan...a wonderful ent got us into surgery right away to help her start to feel better! we went into children's this morning to have them placed. what an amazing hospital. we spent a lot of time at the old children's hospital, but have been lucky enough to not have to visit the new children's. it is perfectly set up for kids and families. it went so smoothly it was wonderful. kinley did amazing. we are home taking a day at home to recover. thank you to everyone for your support and concern for kinley. she is draining some nice yucky stuff out of her ears...so those tubes are working!! i am so excited to have her feeling better!
wagon ride as we arrive at the hospital
dada and kins about to go into the surgery area

sweet baby
waiting for surgery
cuddle time with daddy
about to go back for surgery
kya came back to make sure her sister was okay
kya wanted to rock kinley before we headed home :)
my groggy baby...gotta love all the meds!!

Friday, April 17, 2009

look i can walk!!

all the sudden kinley is taking off!!! we have been doing physical therapy for a couple weeks, and all the sudden she just figured it out! she is EVERYWHERE! it is amazing to see what she has figured out physically this past month! in the last 4 weeks she has started crawling, pulling up, cruising and now is starting to climb stairs and take steps with help!! so fun!! here is kinley using her walker she got for her birthday....she is so excited!

video

mommy i am a big girl now

so kya has decided she is a "big" girl now :) the other day she decided she doesn't need her safety rail up on her bed. i have told her she needed to keep it up on her bed till she turned 4. i love how good she is about staying in her bed and calling for us if she wants to get out. i guess i have thought the rail helps remind her to stay in her bed. well i told her we would try for a week during naps with out the rail and if she stayed in her bed and was good during naps, we would get rid of the rail. well it has not been quite a week, but she has done GREAT. so today i surprised her and put the rail in the closet before naptime. when she walked in her room for nap she was soooo excited! she said "oh mommy my room is beautiful without my rail on my bed" :) she then got a very serious look on her face and told me " mommy i am a big girl now, i am almost 4. i don't need my rail anymore, i promise". she hopped up in bed and i handed her her 2 blankets and her water cup and she said " mommy big girls don't need blankets or cups in bed. it's okay i will be fine you can take them". i asked a bunch of times if she was sure and that was it i left the room and didn't hear a peep for the next 2 1/2 hrs. i had to sneak into get a picture of my "big girl" no blankets, no cup, no rail :)


tonight she wanted to watch a couple of minutes of a movie in our bed before bed. i had just finished putting kinley down and i went to go in my room. i opened the door and she was alone in our room. she said " mommy sometimes big girls need a little space when they watch movies, can you please give me some space?" i said sure kya and headed downstairs to find mark. he said he had been told she needed space too :) so funny! tonight at bedtime mark asked her if she wanted her blankets...she said no dad i am okay (she was not very sure about it) so mark said "well it looks like dixie (her stuffed bunny she was sleeping with ) wants some blankets :) " she agreed that was a good idea.

it is so funny how all the sudden she wants to be the "big girl".

Tuesday, April 14, 2009

what a week!


i don't really know where to begin...this last week has been crazy!
last monday i took kya in to have her ears checked...she was still complaining that her ears hurt after finishing her round of antibiotics. well after that visit i headed home with not 1, but 2 girls with ear infections! yes kinley's R ear was infected yet again... so we started medication on them both. by thurs night kinley spiked another fever and i was up all night with her trying to comfort her. so we went in again friday to have them checked. well the antibiotics were not working at all...her right ear looked worse and now her left was infected also! we were out of antibiotic choices...so the doctor gave her 2 shots of rocephin and told us to come back on sat morning for another round. i spent the rest of the day friday holding a SICK baby girl, trying my best on no sleep to make her feel better! she was a mess! mark came home in time for me to pass her off and head out the door for a night of work...yuck! i was not looking forward to heading into work already being awake 48 hrs! but i MADE it...well kind of... my co-workers were making fun of my hair at about 4 am! i was not looking my best :) i headed home to sleep for a couple hrs before getting up to help take care of kinley and then head to a baby shower of a friend. i was so exhausted i was actually not even that tired at that point....my body was very confused after only sleeping 2-3 hrs in the last 70 ish hrs... i came home from the shower to find kinley in BAD SHAPE. she was so lethargic, had a high temp and would just scream anytime you moved her...so we headed into children's ER to see what we could do. they ran a bunch of tests....and got her more comfortable. we left with no real answers to what for sure was wrong, but that she probably had a NASTY virus and to watch her carefully at home. we crawled into bed around 3am easter morning hoping this was the worst of it....
easter day we had the family over for lunch and let kinley just lay low. she actually slept almost the entire day! i was so excited that she seemed to be doing better!....
on monday kinley broke out with a funky rash ....so we headed into the doctors office again! the doctor was shocked to see all the spots she had all over... she also looked at kinley's ears and her right ear was still infected even after 2 rounds of rocephin injections. poor baby was again a mess...her circulatory system was shutting down due to all the stress on her body. her little feet and hands were swollen and blue. we did ANOTHER round of shots of rocephin to hopefully kick this ear infection out. we also started steroids to help with this skin issue. the doctor didn't think it was an allergic reaction, but instead thought it was caused from the virus she was fighting....
.so we are in a waiting pattern hoping this baby gets better SOON!! we go in again tomorrow to have her ears checked and for the doctor to check out her spots :) i am hoping by tomorrow they will be going away! as i sit here typing, mark and kya are both in bed with fevers! mark has been getting fevers at night for the last couple nights :( he has been trying to hide it from me so i would not stress about him! i am hoping a good long night of sleep will help him! this bug is a NASTY one! i am hoping to not join the bandwagon of illness in this family!
here are some pictures of our spotty girl!
day #1 of her spots!
her arms and legs had them bad :(

mommy's 30th bday with her baby girl!

day #2 of the spots...they moved and look different!
but thank the Lord...this baby is still pretty happy!

Thursday, April 9, 2009

what a great night!

tonight i had date night with kya...just kya and me..
it was AWESOME!! life gets so busy i often don't take the time to stop
and REALLY enjoy what god has blessed me with!
this girl...my first baby girl...is growing up!!
i remember so vividly those first months after she was born...
the questions...the worry...fear...
and look at her now!! she is AMAZING!
kya payton guikema, you are such a light in my life!
i love you more then you will ever know!
being a mom to you is such a gift!
you give me joy, happiness, unconditional love, forgiveness... and so much more
you have a such an amazing heart! you are truly a sweet soul!
there are moments you challenge me...anger me...make me sad...
but in the end our love continues to grow!
i can't wait to see the lord use you!
i just know in my heart he has something very special for you...
your smile, your eyes...that special sparkle that you have
you are such a gift!
i am so glad we had tonight for me to just take time for YOU!
I LOVE YOU KPG!

our dinner date at chipotle she was so excited!
that smile...
being funny
she loves to have her picture taken!
funny girl!
moments like these are priceless!
she said she had to take one of me..
one happy mommy!

Monday, April 6, 2009

she is such a ham

i love that she is learning so many new tricks!! so cute!!
video

Saturday, April 4, 2009

snow day #2

here are some pictures from our snow storm last week. the girls had a blast playing in the snow. it is crazy, but this is the first snowman we have done with kya!!! she was SOOOO excited!
kinley hanging in her stroller
daddy and kya starting the snowman
happy babymommy and kinley playing in the snow
kinley licking here baby snowman :)
so excited!
how fun!
our 1st snowman!!!!
what a fun memory!