Wednesday, December 30, 2009
Tuesday, December 29, 2009
Christmas in Philly
Just a super quick update because I have been very much lacking in my blogging since we arrived on the East Coast. It is freezing (27 degrees or something ridiculous like that!?!). We have been having a great time in Philadelphia with my parents, my sisters & all of the families .. it has been filled with lots of eating, relaxing & just good family fun.
A NORMAL holiday & it feels good!
I don't have my Verizon card so I can't upload pictures from my laptop from our time here but I have some great shots to upload once I get home (or get somewhere with wireless internet). Jim went back to California yesterday & the girls and I fly on Saturday.
I can't describe how wonderful it has been to just have this Christmas be so .. how shall I put it? ... "hospital-free"!
Hannah & Lily are sound asleep in the room that was mine for 17+ years. Same furniture & all ... life is good ... thank you, Lord!
All the best from the house where I grew up ...
A NORMAL holiday & it feels good!
I don't have my Verizon card so I can't upload pictures from my laptop from our time here but I have some great shots to upload once I get home (or get somewhere with wireless internet). Jim went back to California yesterday & the girls and I fly on Saturday.
I can't describe how wonderful it has been to just have this Christmas be so .. how shall I put it? ... "hospital-free"!
Hannah & Lily are sound asleep in the room that was mine for 17+ years. Same furniture & all ... life is good ... thank you, Lord!
All the best from the house where I grew up ...
Wednesday, December 23, 2009
California Christmas
We had a Christmas celebration with our Slazas family the night before we left California. I never got a chance to post pictures ... here are a few of my favorites.
The Slazas' are the most wonderful, caring, kind & giving family anyone could ever meet. They walked with us through the darkest of days and loved on Lily for months at a time when we could not do so. Thank you, Lord, for the treasure of their love & friendships!!!
Lily with her Mom & her "Auntie Mom" (what she calls Kim .. so sweet!!)
Sweet Katie with the girls that she loves so much & babysits for regularly!
The Slazas' are the most wonderful, caring, kind & giving family anyone could ever meet. They walked with us through the darkest of days and loved on Lily for months at a time when we could not do so. Thank you, Lord, for the treasure of their love & friendships!!!
Lily with her Mom & her "Auntie Mom" (what she calls Kim .. so sweet!!)
Sweet Katie with the girls that she loves so much & babysits for regularly!
NIH Appointment
We all made it to the East Coast on Sunday without any problems despite the 20" of snow that arrived on Saturday. It was a whirlwind trip to the NIH. We got to the Children's Inn about 7pm on Sunday - ate, played, watched Survivor & went to bed. Hannah & I got up early to be over at NIH for her appointment. Her biopsy was at 10:30 & Hannah did great. Seriously, you'd think she was on her way to Disneyland the way she handles it all. Just smiling & waving to me as she goes off on the gurney to the OR. Waking up from the anesthesia was another story but after some lunch she is doing fine. Not even really complaining of much back pain. The results from the biopsy take about 2 weeks to come back.
We did see her doctor at NIH & he is very encouraged by her progress. He told Hannah "officially" to go back to school ... & to send him the report cards :-)! So sweet. He is starting to cut back on the immune suppression medication that she has been taking for the last year. We will slowly taper this drug over the next several months. Hopefully Hannah will be able to maintain her blood counts without needing the medication. Her white blood cell count was down a bit but her platelets & hemoglobin was up (55k platelets, 9.4 hemoglobin). Truly, a miracle to see these kinds of numbers with Hannah's name at the top of the paper!
Before we left California, Hannah & I spent an entire day at her school visiting what will be her class for the 2nd half of 2nd grade. Her teacher, Miss D, is a DREAM. She is truly a perfect fit for Hannah. I am so thankful!!!!! She is kind, caring, intuitive, funny & believes in giving hugs :-)! Hannah loved her & seemed to feel very comfortable .. I know it will all be a huge transition but I feel really good that Miss D is going to help ease Hannah's transition back to "real life".
Right now we are at my parent's place for Christmas. My younger sister, Miriam, & her family are driving from Indianapolis to join us all. A mini-family reunion will be happening here.. all of us are looking forward to JUST BEING TOGETHER! Truly a miracle after what this year has been.
All God's best from my parent's place --
We did see her doctor at NIH & he is very encouraged by her progress. He told Hannah "officially" to go back to school ... & to send him the report cards :-)! So sweet. He is starting to cut back on the immune suppression medication that she has been taking for the last year. We will slowly taper this drug over the next several months. Hopefully Hannah will be able to maintain her blood counts without needing the medication. Her white blood cell count was down a bit but her platelets & hemoglobin was up (55k platelets, 9.4 hemoglobin). Truly, a miracle to see these kinds of numbers with Hannah's name at the top of the paper!
Before we left California, Hannah & I spent an entire day at her school visiting what will be her class for the 2nd half of 2nd grade. Her teacher, Miss D, is a DREAM. She is truly a perfect fit for Hannah. I am so thankful!!!!! She is kind, caring, intuitive, funny & believes in giving hugs :-)! Hannah loved her & seemed to feel very comfortable .. I know it will all be a huge transition but I feel really good that Miss D is going to help ease Hannah's transition back to "real life".
Right now we are at my parent's place for Christmas. My younger sister, Miriam, & her family are driving from Indianapolis to join us all. A mini-family reunion will be happening here.. all of us are looking forward to JUST BEING TOGETHER! Truly a miracle after what this year has been.
All God's best from my parent's place --
Wednesday, December 16, 2009
The Latest
Here is the update on Hannah's health:
* Bone Marrow Transplant is still officially on hold. Hannah has gone without a blood or platelet transfusion since the beginning of October -- this is huge!! If she can remain "transfusion free" she will not need a bone marrow transplant. What an answer to sooooooooo many prayers! Thank you, Lord!!! Last December she was getting transfusions at least once a week, sometimes more frequently!?! If her bone marrow fails again it is my understanding that she will go right to transplant. Her donor in Europe is "on hold".
* Hannah's counts are holding steady. White blood cells 5.3, Hemoglobin 8.5, platelets 45K. ANC is 3,000! These numbers are so encouraging!!!!! Truly a miracle!
* We fly this coming Sunday to the NIH for Hannah to have a follow-up bone marrow biopsy on Monday, 12/21. The biopsy will tell what is really going on at a cellular level with Hannah's body (the bone marrow is the "factory" making red / white cells & platelets).
* We just got the OK, via email, from Hannah's NIH doctor, that she can go back to school in January!!!!! Yes, you just read that right: HANNAH CAN GO BACK TO SCHOOL .. GO BACK TO NORMAL LIFE ... GO BACK TO FRIENDS .. GO BACK TO THE PLAYGROUND!! Jim & I are working with the principal of her school to find the best possible teacher for Hannah. It will be a huge transition for her!
* Hannah DOES NOT know that the doc has approved her going back to school (so if you see her at the Fusion Christmas party, PLEASE DO NOT SAY ANYTHING!!!!). We are "working the conversation" with her so she can start adjusting her mind to the idea of going back to school in January.
Here are some pictures from life at home.
Things have just been normal for us & honestly, it is emotionally overwhelming. Why? I really don't know. I guess all the emotions I could not let out during all those months of hospital stays & endless clinic appointments have finally caught up to me.
Happy girl playing play dough this morning in her absolute favorite pajamas (she calls them "zip its" b/c they zip up. And yes, I realize I needed to wipe her nose!
Hannah at Jenna's 8th birthday party this past Saturday. A "Girl's Rock" party .. so fun!
What a sweetie pie!
Two sisters camped out together in the guest bedroom ... I love how their arms are in the same position!
Out for a walk while Hannah was having school at home with her teacher.
She is a total cheese .. appropriate that she is eating Cheese Puffs "Nack, Nack" (Snack).
All God's Best from HOME --
* Bone Marrow Transplant is still officially on hold. Hannah has gone without a blood or platelet transfusion since the beginning of October -- this is huge!! If she can remain "transfusion free" she will not need a bone marrow transplant. What an answer to sooooooooo many prayers! Thank you, Lord!!! Last December she was getting transfusions at least once a week, sometimes more frequently!?! If her bone marrow fails again it is my understanding that she will go right to transplant. Her donor in Europe is "on hold".
* Hannah's counts are holding steady. White blood cells 5.3, Hemoglobin 8.5, platelets 45K. ANC is 3,000! These numbers are so encouraging!!!!! Truly a miracle!
* We fly this coming Sunday to the NIH for Hannah to have a follow-up bone marrow biopsy on Monday, 12/21. The biopsy will tell what is really going on at a cellular level with Hannah's body (the bone marrow is the "factory" making red / white cells & platelets).
* We just got the OK, via email, from Hannah's NIH doctor, that she can go back to school in January!!!!! Yes, you just read that right: HANNAH CAN GO BACK TO SCHOOL .. GO BACK TO NORMAL LIFE ... GO BACK TO FRIENDS .. GO BACK TO THE PLAYGROUND!! Jim & I are working with the principal of her school to find the best possible teacher for Hannah. It will be a huge transition for her!
* Hannah DOES NOT know that the doc has approved her going back to school (so if you see her at the Fusion Christmas party, PLEASE DO NOT SAY ANYTHING!!!!). We are "working the conversation" with her so she can start adjusting her mind to the idea of going back to school in January.
Here are some pictures from life at home.
Things have just been normal for us & honestly, it is emotionally overwhelming. Why? I really don't know. I guess all the emotions I could not let out during all those months of hospital stays & endless clinic appointments have finally caught up to me.
Happy girl playing play dough this morning in her absolute favorite pajamas (she calls them "zip its" b/c they zip up. And yes, I realize I needed to wipe her nose!
Hannah at Jenna's 8th birthday party this past Saturday. A "Girl's Rock" party .. so fun!
What a sweetie pie!
Two sisters camped out together in the guest bedroom ... I love how their arms are in the same position!
Out for a walk while Hannah was having school at home with her teacher.
She is a total cheese .. appropriate that she is eating Cheese Puffs "Nack, Nack" (Snack).
All God's Best from HOME --
Friday, December 11, 2009
Happy Hanukkah!
So, I am Jewish and a Christian.
I know, for some, that sounds like a complete oxymoron. But Jesus himself was a Jew and I know Him as Messiah.
Jim is not Jewish but it is has become increasingly important to us to make sure our girls know the Jewish heritage of our family.
My dad escaped the Holocaust. He was on the last train leaving Austria in 1939 that allowed Jews to willing leave the country. From Italy he took a ship with his parents to the United States. They arrived in NYC in October 1939. He was 2 years old.
My dad instilled in my sisters & I a love for those that worked to save the Jews during World War II. Corrie ten Boom is my hero .. if you have not read her book, The Hiding Place, it is a must read. She & her family (all gentiles) hid Jewish people in their Dutch home during the war. Except for Corrie, her entire family died in the camps once they were caught hiding Jews.
All this to say .. we celebrated the first night of Hanukkah tonight. Nothing major because I still don't feel great but it was a miracle to light the Menorah with our two precious miracles.
Both of my daughters are walking miracles. Hannah because of all that she went through to live through this past year & Lily, for so many, many reasons!!!!
I am thankful to the Lord for all He has done to preserve our family.
It has been a very rough year but we have so much to celebrate!
Each day is a miracle ... embrace the life you are living!!
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P.S. On a separate note, Drew went home from Children's Hospital Boston -- Christmas tree is up at his house. What a miracle for him & his family tonight!! And, Ethan's bone marrow has "engrafted" with his donor's marrow!! Ethan still has many things to get through at City of Hope but, thank God, his body is on the right track! What a gift for his family tonight!!
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I completely forgot to mention that Hannah got her ears pierced this week!!!!! She was so cute! She danced around Claire's afterward singing (well, practically yelling) "I GOT MY EARS PIERCED!!!" The lady at the store said, "It is so nice to see someone so genuinely excited about getting their ears pierced." She was very sweet ... if only she knew that this was the LEAST traumatic thing Hannah had been through in the past 12 months. Here are some pictures from our outing at Claire's:
Thursday, December 10, 2009
Been Sick ..
* I feel miserable. Ear ache. Sinus headache. Blah, blah, blah.
* As a side note, I'd like to mention this: KAISER ROCKS! I love our health insurance - called at 4pm today; got in at 5:30 for appointment; picked up prescription by 6:15 -- unbelievable. Forget Obama-care, can we please have Kaiser take over the entire national system? They've got it right. Not to mention that without Kaiser, we'd be bankrupt because of all Hannah's hospital stays, tests, ambulance rides, etc.
* The girls are doing great.
* Lily is just hilarious. Seriously, I love her sense of humor. She laughs & her laugh is just contagious to everyone! I am too tired right now to think of a funny story ... but there are many.
* Hannah is happy at home. We are debating about putting her back in school in January. If the doctor will give approval, I think it would be really good. I am going a bit crazy being home 24/7 with both girls. I am thankful we are home, don't get me wrong, but I need space and I am not getting any right now. All good problems so really I am not complaining ... just ready to see if we can make some adjustments (of course, only if the doctor is sure it is OK for Hannah's health).
* We've been doing normal things & just happy to be home. Christmas tree is up. This is the first year since we have had Lily that I put decorations on the tree. I cried putting up the chinese ornaments we bought in China ... and that my sister gave me about 4 years ago while we were waiting. Amazing that our China baby is HOME!! :-)
* I am working on getting our Christmas cards sent out. Long story but I did two total different versions -- b/c I printed one set & then didn't have enough. So some of you are getting one version & some are getting another ... no reason why some got one card & others got another. I am just completely disorganized this year but glad that life is normal enough that at least a card is going out :-)
* An electric blanket & Costco-fake-UGG-boots are a good thing this time of year in Southern California when the temps dip into the 50's during the day & 40's at night. I am such a wimp with the cold!!!!!! How could I have really grown up on the East Coast?!
* Pray for our friends recovering from bone marrow transplants because of Aplastic Anemia: Drew (at Children's in Boston) and Ethan (at City of Hope here in LA). These boys have been through so much but are thankfully recovering ... pray for their moms: both named Jennifer. I know the feeling of wanting to climb the walls in the hospital room after weeks & weeks of staying in-patient!
OK -- off to my warm cozy bed!
All God's best from Southern California,
* As a side note, I'd like to mention this: KAISER ROCKS! I love our health insurance - called at 4pm today; got in at 5:30 for appointment; picked up prescription by 6:15 -- unbelievable. Forget Obama-care, can we please have Kaiser take over the entire national system? They've got it right. Not to mention that without Kaiser, we'd be bankrupt because of all Hannah's hospital stays, tests, ambulance rides, etc.
* The girls are doing great.
* Lily is just hilarious. Seriously, I love her sense of humor. She laughs & her laugh is just contagious to everyone! I am too tired right now to think of a funny story ... but there are many.
* Hannah is happy at home. We are debating about putting her back in school in January. If the doctor will give approval, I think it would be really good. I am going a bit crazy being home 24/7 with both girls. I am thankful we are home, don't get me wrong, but I need space and I am not getting any right now. All good problems so really I am not complaining ... just ready to see if we can make some adjustments (of course, only if the doctor is sure it is OK for Hannah's health).
* We've been doing normal things & just happy to be home. Christmas tree is up. This is the first year since we have had Lily that I put decorations on the tree. I cried putting up the chinese ornaments we bought in China ... and that my sister gave me about 4 years ago while we were waiting. Amazing that our China baby is HOME!! :-)
* I am working on getting our Christmas cards sent out. Long story but I did two total different versions -- b/c I printed one set & then didn't have enough. So some of you are getting one version & some are getting another ... no reason why some got one card & others got another. I am just completely disorganized this year but glad that life is normal enough that at least a card is going out :-)
* An electric blanket & Costco-fake-UGG-boots are a good thing this time of year in Southern California when the temps dip into the 50's during the day & 40's at night. I am such a wimp with the cold!!!!!! How could I have really grown up on the East Coast?!
* Pray for our friends recovering from bone marrow transplants because of Aplastic Anemia: Drew (at Children's in Boston) and Ethan (at City of Hope here in LA). These boys have been through so much but are thankfully recovering ... pray for their moms: both named Jennifer. I know the feeling of wanting to climb the walls in the hospital room after weeks & weeks of staying in-patient!
OK -- off to my warm cozy bed!
All God's best from Southern California,
Saturday, December 5, 2009
Lily & More
First, the "More":
* Hannah's blood counts remain stable & have been trending upwards. We took a trip to Kaiser on the evening of December 1st b/c Hannah wasn't feeling well. Not sure what was going on but she just was not herself & we wanted to get her blood levels checked to make sure everything was OK. Her blood counts came back higher than they have been in a year!!!!! Not normal yet but higher than they have been. December 1st was the actual anniversary of her going into the hospital last year. To say the least, I felt so sick to my stomach making the drive to Kaiser Fontana. Talk about a "WHAT IS GOING ON NOW?!" kind of feeling. It just felt like the whole nightmare was starting over. A complete relief to get her blood counts back & have positive news. I am so grateful to the Lord for this time at home & her being better than she was a year ago!
* There is a blood drive this coming week specifically for a little boy, Noah, that was diagnosed this Fall with the same thing that Hannah has, Aplastic Anemia. What better gift can you be giving this Christmas?? Hannah has probably had close to 100 blood & platelet transfusions since last December. Blood and platelet transfusions are what sustain life for these kids while waiting for their bodies to either respond to treatment or get a bone marrow transplant.
If you can't donate blood but have not signed up for the bone marrow registry, please stop by so you can register for the bone marrow registry. All it takes to register is a swab of your cheek. Noah's family is aggressively looking for a bone marrow match. A bone marrow transplant is the only CURE for this disease.
Here is the information: Blood and Bone Marrow Registry Drive on December 9th at 4630 Wheeler Avenue on the corner of Baseline Road and Wheeler from 8am to 2pm. To donate blood, you may make appointments by emailing mkech@roadrunner with your name, phone # and preferred appointment times. They will be taking appointments in 15 minute increments with the last appointment at 1:45pm. No appointment is necessary for the bone marrow test.
Now, on to the most precious baby from all of China, LILY:
We received a letter MONTHS & MONTHS ago in the midst of all the hospital stays with Hannah. The entire letter was in Chinese so I didn't know who the letter was from. I put the letter aside & forgot about it. Friends just translated the letter and it was from Lily's foster mother in China. A beautiful letter. I do believe that Lily was very loved baby for the first 53 weeks of her life. I don't know how she could not have been considering how she has always been so full of joy & engaging with others.
While Lily was in foster care there was another adorable baby in the same home, Meredith, now living in Colorado. Meredith's mom & I are planning a trip in January for our precious China girls to reunite. It is such a special gift that Lily & Meredith have each other from their beginnings in China. A letter also came for Meredith's family ... Margo, I promise I will figure out which one is your letter & send it this week!
I am sending a letter back to Lily's foster mom with some pictures that I put together of Lily these past few months. Here is a look at the other pictures I am sending.
Truly, I got the prize with this precious girl ... thank you, Lord!!!
Friday, December 4, 2009
Happy Birthday to a True Gem in This World
Tuesday, December 1, 2009
Uninhibited Hannah
My dad sent me the sweetest email on Thanksgiving.
I won't post his letter (because of the ongoing investigation .. ha, ha) but it is just filled with encouragement & love. In his letter he mentioned the "gorgeous uninhibited Hannah" .... & he is so right!
I just came across this video tonight from a trip we took to the Bahamas in the Fall of 2007 with our dear friends, Rick & Satu. Hannah was dancing away on the deck of the ship.
When they say dance like no one is watching, Hannah certainly does just that -- enjoy!
She is a treasure!!!
I won't post his letter (because of the ongoing investigation .. ha, ha) but it is just filled with encouragement & love. In his letter he mentioned the "gorgeous uninhibited Hannah" .... & he is so right!
I just came across this video tonight from a trip we took to the Bahamas in the Fall of 2007 with our dear friends, Rick & Satu. Hannah was dancing away on the deck of the ship.
When they say dance like no one is watching, Hannah certainly does just that -- enjoy!
She is a treasure!!!
Monday, November 30, 2009
Remembering A Year Ago
Did you know there is a very certain odor in the hospital? I will never forget the distinct scent when the double doors opened to the Pediatrics Unit for Hannah to be admitted one year ago today.
It was a year ago today, the Monday after Thanksgiving, that I took Hannah to the doctor to get checked & have blood drawn to see why she had so many bruises. I remember driving West on the 210 Freeway when the doctor reached me on my cell phone just a few hours after our morning appointment. I remember him saying things like " Hannah is very ill probably not leukemia but something very serious ... get to the hospital, pack a teddy bear, you will probably sleep over at least a few nights." What he should have said was: TAKE YOUR CALENDAR & THROW IT INTO THE BLENDER, YOUR LIFE HAS JUST BEEN HIT BY A BUS! Hannah was in-patient for such a long time!!!!
How has it been a year?
I don't know but it's been a full year & I am standing here today as a complete testament to God's amazing grace. It is only His strength that has carried all of us through. He is so faithful & on this day of Hannah's Aplastic-versary, I have to say: THANK YOU, LORD!
Thank you that my girl is here to decorate the tree, to sleep in the same room as her sister, to have gone 2 months now without a transfusion, to be in an acting class, to say to me a million times a day "look at me, Mom", & of course, to drive me crazy in so many ways. :-)
My heart is so grateful to the Lord for all He has carried us through during these past 12 months. God is faithful.
No matter what you are going through today -- NO MATTER WHAT -- He is there. If you will let Him, He will carry you through. I know this for a fact. I know this as a mom who went for a long time living on a hospital unit with my 7 year old attached to an IV pole. I know God is faithful & He is my loving, kind & caring Heavenly Father that I can trust NO MATTER WHAT.
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"As for me, I will always have hope; I will praise You more & more. My mouth will tell of Your righteousness, of Your salvation all day long, though I know not its measure." Psalm 71:14-15
"The Lord reigns, He is robed in majesty; the Lord is robed in majesty and is armed with strength. The world is firmly established; it cannot be moved. Your throne was established long ago; You are from all eternity." Psalm 93:1-2
It was a year ago today, the Monday after Thanksgiving, that I took Hannah to the doctor to get checked & have blood drawn to see why she had so many bruises. I remember driving West on the 210 Freeway when the doctor reached me on my cell phone just a few hours after our morning appointment. I remember him saying things like " Hannah is very ill probably not leukemia but something very serious ... get to the hospital, pack a teddy bear, you will probably sleep over at least a few nights." What he should have said was: TAKE YOUR CALENDAR & THROW IT INTO THE BLENDER, YOUR LIFE HAS JUST BEEN HIT BY A BUS! Hannah was in-patient for such a long time!!!!
How has it been a year?
I don't know but it's been a full year & I am standing here today as a complete testament to God's amazing grace. It is only His strength that has carried all of us through. He is so faithful & on this day of Hannah's Aplastic-versary, I have to say: THANK YOU, LORD!
Thank you that my girl is here to decorate the tree, to sleep in the same room as her sister, to have gone 2 months now without a transfusion, to be in an acting class, to say to me a million times a day "look at me, Mom", & of course, to drive me crazy in so many ways. :-)
My heart is so grateful to the Lord for all He has carried us through during these past 12 months. God is faithful.
No matter what you are going through today -- NO MATTER WHAT -- He is there. If you will let Him, He will carry you through. I know this for a fact. I know this as a mom who went for a long time living on a hospital unit with my 7 year old attached to an IV pole. I know God is faithful & He is my loving, kind & caring Heavenly Father that I can trust NO MATTER WHAT.
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"As for me, I will always have hope; I will praise You more & more. My mouth will tell of Your righteousness, of Your salvation all day long, though I know not its measure." Psalm 71:14-15
"The Lord reigns, He is robed in majesty; the Lord is robed in majesty and is armed with strength. The world is firmly established; it cannot be moved. Your throne was established long ago; You are from all eternity." Psalm 93:1-2
Thursday, November 26, 2009
Happy Thanksgiving
Hannah lost her first tooth tonight & her comment was, "It is the night before Thanksgiving & I am losing teeth not my hair". Chemo was to have started on Thanksgiving as preparation for the BMT.
I feel like I just keep repeating myself but there are no words to describe the tremendous joy of having Hannah out of the hospital & on the road to remission.
I want every person that reads this blog & has supported us during these very difficult months to know from the bottom of my heart how grateful I am.
I have never once felt like I was walking this road alone and in the midst of some very dark days, that knowledge has always been a gift. I am grateful to the Lord for so many that have cared for our family, prayed for us & helped us in many practical ways.
Our entire family is so thankful for the tremendous support we have received.
We are truly blessed.
Even in the joy of this time, my heart is heavy for those we know that are enduring this disease right now in the hospital: Ethan, age 4, at City of Hope -- fighting fevers, cold symptoms & waiting for engrafement of his new bone marrow. Erin, a friend of ours from NIH, with an infection in her central line.
No matter what is going on today -- burnt yams, dry turkey, crying babies, whatever -- just count your blessings. There really are so many!
Wednesday, November 25, 2009
Just Plain Happiness In Cambria, CA
Friday, November 20, 2009
Numbers Going UP
We went to clinic today & Hannah's numbers are going up.
Yes, GOING UP!
I am overwhelmed with emotion to be a front row witness of Hannah's road to recovery. What a blessing, especially less than one week before Thanksgiving to see her numbers rising. We had been scheduled to start her bone marrow transplant prep on Thanksgiving day. Thank you, Lord, that we are home & life feels n-o-r-m-a-l!!!!
Her white blood cell count is just about into the low normal range .. did I really just type that? Yes, almost into the normal range. Her platelets went up 10K on their own & her hemoglobin is holding (despite having to get her blood re-checked this afternoon b/c the first test showed her hemoglobin as being critically low).
I am so excited because we are leaving this Sunday to spend a few nights in Cambria. It will be so nice!!!
I am so grateful for God's goodness & His ever present help to me in my never ending moments of need!!!
Please take a click over to Pearl River Outreach to see how you can help some very special orphans in China during this season. The little girl we sponsor, Callie, was just placed with her forever family. When I told Hannah that Callie had been adopted she reacted as if Callie was coming here -- she was so incredibly excited for Callie to have been adopted. It was adorable to see her joy for Callie & now we are ready to sponsor another one of these precious babies!
And, finally, please pray for two kids we know from this world of Aplastic Anemia:
Ethan & Noah.
Noah lives a few towns over & he was diagnosed with Aplastic Anemia in September. He is plowing through many bleeding issues that this disease typically causes. I know how hard it is for any child to deal with this disease, not to mention how exhausting it is to be the mom dealing with all the complications.
Ethan has been in isolation in his room at City of Hope with his mom for 2 weeks. He is waiting for his new bone marrow to engraft. Nothing would be a better Thanksgiving gift than to see his blood counts to start rising on their own!!
If you'd like to send a card to Ethan, he is four years old & the address is:
Ethan Barrios
City of Hope Hospital Pediatric Unit, Room #3123
1500 E. Duarte Road
Duarte, CA 91010
My heart just breaks for the journey of this disease ..
Yes, GOING UP!
I am overwhelmed with emotion to be a front row witness of Hannah's road to recovery. What a blessing, especially less than one week before Thanksgiving to see her numbers rising. We had been scheduled to start her bone marrow transplant prep on Thanksgiving day. Thank you, Lord, that we are home & life feels n-o-r-m-a-l!!!!
Her white blood cell count is just about into the low normal range .. did I really just type that? Yes, almost into the normal range. Her platelets went up 10K on their own & her hemoglobin is holding (despite having to get her blood re-checked this afternoon b/c the first test showed her hemoglobin as being critically low).
I am so excited because we are leaving this Sunday to spend a few nights in Cambria. It will be so nice!!!
I am so grateful for God's goodness & His ever present help to me in my never ending moments of need!!!
Please take a click over to Pearl River Outreach to see how you can help some very special orphans in China during this season. The little girl we sponsor, Callie, was just placed with her forever family. When I told Hannah that Callie had been adopted she reacted as if Callie was coming here -- she was so incredibly excited for Callie to have been adopted. It was adorable to see her joy for Callie & now we are ready to sponsor another one of these precious babies!
And, finally, please pray for two kids we know from this world of Aplastic Anemia:
Ethan & Noah.
Noah lives a few towns over & he was diagnosed with Aplastic Anemia in September. He is plowing through many bleeding issues that this disease typically causes. I know how hard it is for any child to deal with this disease, not to mention how exhausting it is to be the mom dealing with all the complications.
Ethan has been in isolation in his room at City of Hope with his mom for 2 weeks. He is waiting for his new bone marrow to engraft. Nothing would be a better Thanksgiving gift than to see his blood counts to start rising on their own!!
If you'd like to send a card to Ethan, he is four years old & the address is:
Ethan Barrios
City of Hope Hospital Pediatric Unit, Room #3123
1500 E. Duarte Road
Duarte, CA 91010
My heart just breaks for the journey of this disease ..
Wednesday, November 18, 2009
Sunday, November 15, 2009
Happy Birthday, Hannah!
Today my sweet Hannah turned eight. HOW has it been eight years since I heard "it's a girl" at Loma Linda Hospital?!
I always knew she was an amazing little girl but she has proved it over & over this past year with all the challenges she faced. I didn't know her inner strength until this year ... thank you, Lord, for giving her what she has needed to get through so much!!
After everything we have been through it just felt like Hannah's birthday was a gift to us all. Just to have this day. To have her here. To all be home. To not be in the hospital. To not have an IV pole attached ... the day was just a gift!
We spent the day at Disneyland for hours & hours & hours.
Hannah is a delight to have as a daughter. She brings joy, laughter, happiness, and more fun than I could have ever imagined.
I am so proud of her in so many ways but particularly the way she is in her role as "Big Sister". What a gift she & Lily are to one another!
Hannah, you are so loved! I always go through the whole list with Lily of who loves her but just know the list is just as long for you, sweet girl!
I am so incredibly proud of you & thankful that God chose me to be your mom. You are a blessing to my heart .... & to so many!!!!!!
I love you forever -- XOXOXO!!!!
Friday, November 13, 2009
Pictures That Never Made the Blog
Kim gave me 2 CD's full of pictures of Lily from her time of living with them over this past year. Here are just a few of the pictures that never made the blog ... if you can't tell from these photos, life was one big party @ the Slazas house for Lil!!
Field Trip with "Auntie Mom" & the kids
Disneyland parade & loving it!
Lucky Charms, anyone?
Shop at Costco, anyone?
Lily L-O-V-E-S "Uncdole" ... he has spent many, many hours playing with her & the bond is very apparent!! Thank you, Uncdole :-)!
I saw this picture for the first time last night -- hysterical the things they were up to. Balls up the shirts -- so funny!!! Kim is not expecting ... well, except for a basketball maybe.
Why, Lily, you are growing up so quickly!
This picture above says it all! Lily gets so excited to go over there & the love she has for them is forever! Thank you Slazas family for all the fun & for all these great pictures plus hundreds more. I am so thankful to have her first year in America documented so well despite missing so much of it.
PS -- Hannah's numbers were unchanged at clinic & we don't have to go back until NEXT Friday ... no transfusions & she is doing really well!!!!! Thank you, Lord!
Field Trip with "Auntie Mom" & the kids
Disneyland parade & loving it!
Lucky Charms, anyone?
Shop at Costco, anyone?
Lily L-O-V-E-S "Uncdole" ... he has spent many, many hours playing with her & the bond is very apparent!! Thank you, Uncdole :-)!
I saw this picture for the first time last night -- hysterical the things they were up to. Balls up the shirts -- so funny!!! Kim is not expecting ... well, except for a basketball maybe.
Why, Lily, you are growing up so quickly!
This picture above says it all! Lily gets so excited to go over there & the love she has for them is forever! Thank you Slazas family for all the fun & for all these great pictures plus hundreds more. I am so thankful to have her first year in America documented so well despite missing so much of it.
PS -- Hannah's numbers were unchanged at clinic & we don't have to go back until NEXT Friday ... no transfusions & she is doing really well!!!!! Thank you, Lord!
Wednesday, November 11, 2009
Just Another NORMAL Day
Hannah's doctor at NIH said to hold off on giving red blood cells until Hannah is symptomatic (also, our dear friend Alan called -- he is a doctor friend that is like family to us). Alan really encouraged me to not get caught up in what Hannah's numbers are for just one visit to clinic. Thank you, Alan, for the encouragement to just keep an eye on the trends ... and those trends have been stable!! A lot to be thankful for. We will go back to clinic on Friday to check things & make the doctor here feel comfortable :-)
Here is a picture of Lily from tonight -- it was just her & I. So nice to have an outing with my little girl - just running errands & having frozen yogurt together. I have missed so much time with her & finally I am starting to feel back to myself. Being with Lily is so fun & such therapy!
PS -- The countdown is on to Hannah's 8th Birthday -- she will be 8 on Sunday!!!!!!! She was given some money as a special gift & she wants to use it for annual passes to Disneyland. It is kind of like a 2nd "Make A Wish" ... of course, after all her Hollywood adventures this might be like a 5th "Make a Wish" ... can't have too many when you have been through what she has been through! Thank you, friends, for this gift!
Tuesday, November 10, 2009
And we went to clinic today ....
& they weren't even expecting us. I guess Hannah's name never made it to the schedule but they took us after a few minutes of waiting & Hannah got blood drawn. We made a lot of jokes with the nurse about port accessing. So thankful that we are not doing that anymore!!!!!!!!!!!! It is just amazing to go to clinic, have Hannah bring her line out from underneath her shirt that is attached to her body & have her blood drawn. No stress. No tension. Clinic is just plain fun to see friends :-) .. thank you, Lord!!! Lily can even come with us on days like this because I don't need to worry about helping Hannah get through the appointment.
Hannah's numbers came back with her platelets holding steady (once again, right around 40K) but her hemoglobin dropped to 7.7. The doctor here wants her to get red blood cells tomorrow. Jim is going to call our NIH doctor in the morning to see if they agree or if we should wait a bit longer to give her a transfusion. So disheartening to hear that her hemoglobin dropped this past week.
Aplastic Anemia is just one big stinking roller coaster. I am so thankful we are home right now .. not complaining ... but I just want her healthy. I just want to know that she is 100% healed.
Guess it doesn't work that way. At least, not yet.
Ethan's bone marrow transplant happened today (it was supposed to be Monday) -- just pray he would do well as he waits for the donor cells to find their way to his bone marrow. His donor is a 20 year old guy from Germany ... just amazing to think that this young man anonymously saved this little boys life today. Incredible! There were additional complications (I guess the bag with the marrow leaked!?! They were able to recover 95% of the cells but there is concern for contamination.) Pray for no infections. My heart is just so heavy for Ethan & his family ... I guess because it all hits so close to home.
Don't take one day of healthy, happy, crazy, normal life for granted ... it can all change in an instant.
All God's best from HOME --
Hannah's numbers came back with her platelets holding steady (once again, right around 40K) but her hemoglobin dropped to 7.7. The doctor here wants her to get red blood cells tomorrow. Jim is going to call our NIH doctor in the morning to see if they agree or if we should wait a bit longer to give her a transfusion. So disheartening to hear that her hemoglobin dropped this past week.
Aplastic Anemia is just one big stinking roller coaster. I am so thankful we are home right now .. not complaining ... but I just want her healthy. I just want to know that she is 100% healed.
Guess it doesn't work that way. At least, not yet.
Ethan's bone marrow transplant happened today (it was supposed to be Monday) -- just pray he would do well as he waits for the donor cells to find their way to his bone marrow. His donor is a 20 year old guy from Germany ... just amazing to think that this young man anonymously saved this little boys life today. Incredible! There were additional complications (I guess the bag with the marrow leaked!?! They were able to recover 95% of the cells but there is concern for contamination.) Pray for no infections. My heart is just so heavy for Ethan & his family ... I guess because it all hits so close to home.
Don't take one day of healthy, happy, crazy, normal life for granted ... it can all change in an instant.
All God's best from HOME --
Saturday, November 7, 2009
A Week of Normal
Hannah's counts on Tuesday were good: wbc 3.2; hemoglobin 8.1; platelets around 40k. We are still on hold for the bone marrow transplant & will know more after our visit to NIH on December 21st for Hannah's bone marrow biopsy. Please just keep praying that her bone marrow will continue to respond to her treatment from June & that her body will get back to work all on its own. We are all just so thankful for these days out of the hospital & the normalcy of life right now.
Hannah helped me re-arrange the living room this week & she was hilarious! It was a mixture of her acting skills & her experience of watching HGTV with my mom. At one point, she said about some pictures that I had on the wall: "Mom, see those pictures over there -- it is like they are saying: We are trying to decorate but we are not doing a very good job" I almost wet my pants laughing .. it was so funny! Oh, the brutal honesty of a child ... love it!
We had so many normal things this week, a wonderful life that I do not take for granted:
Went shopping at IKEA (I let Hannah do all the picking out, thank you very much!)
Girl Scout meeting
Katie babysitting at our house (versus Lily being at her place & us at the hospital)
Lunch at Chick fil A
Hannah started an acting class in Studio City & she LOVES it. The class is just on Saturday's for 2 1/2 hours.
Hannah's teacher came to visit twice this week (Hannah's doctor still won't let her back in school b/c of her counts ... it has a lot to do with low hemoglobin & all the swine flu stuff).
Lily is being so sweet ... and so determined ... and so adorable ... and so talkative ... and so funny. She is desperate to make friends. The girl is just wired this way. When we came home from China, before I knew Lily's personality, I swore I'd never put her in any kind of pre-school until she was at least 4. Well, let me just say, that isn't going to work for this little pumpkin. She talks every day about "FRIENDS" We put her on the waiting list of a fantastic pre-school that Hannah went to. When we went to drop the paperwork off I was explaining to her that this is where she is going to make friends. Ever since then, at least a few times a day, she says: FRIENDS!?! It is very hard to explain the concept of "waiting list" :-)
One night at bedtime I was talking to Lily about her foster sister, Meredith, and I told her one day we would get together with her so they could still be friends. Lily said, "Morning?!" As in, can we go see Meredith in the morning? Soo cute!
OK -- Hope everyone is having a great weekend! Please say an extra prayer for a friend of ours from this crazy world of Aplastic Anemia, Ethan. He is so little & about to have a bone marrow transplant at City of Hope on Monday night. He has completed his chemotherapy & radiation. Pray for his Mom, Jennifer, that God would give her every ounce of strength that she needs to get through as the full time parent with him at City of Hope. Pray also for his brother, Cole & dad at home in the LA area. My heart just breaks for this journey that none of us would choose to be on. Here is a picture of Ethan & his family, he is on his dad's lap -- please pray!
Hannah helped me re-arrange the living room this week & she was hilarious! It was a mixture of her acting skills & her experience of watching HGTV with my mom. At one point, she said about some pictures that I had on the wall: "Mom, see those pictures over there -- it is like they are saying: We are trying to decorate but we are not doing a very good job" I almost wet my pants laughing .. it was so funny! Oh, the brutal honesty of a child ... love it!
We had so many normal things this week, a wonderful life that I do not take for granted:
Went shopping at IKEA (I let Hannah do all the picking out, thank you very much!)
Girl Scout meeting
Katie babysitting at our house (versus Lily being at her place & us at the hospital)
Lunch at Chick fil A
Hannah started an acting class in Studio City & she LOVES it. The class is just on Saturday's for 2 1/2 hours.
Hannah's teacher came to visit twice this week (Hannah's doctor still won't let her back in school b/c of her counts ... it has a lot to do with low hemoglobin & all the swine flu stuff).
Lily is being so sweet ... and so determined ... and so adorable ... and so talkative ... and so funny. She is desperate to make friends. The girl is just wired this way. When we came home from China, before I knew Lily's personality, I swore I'd never put her in any kind of pre-school until she was at least 4. Well, let me just say, that isn't going to work for this little pumpkin. She talks every day about "FRIENDS" We put her on the waiting list of a fantastic pre-school that Hannah went to. When we went to drop the paperwork off I was explaining to her that this is where she is going to make friends. Ever since then, at least a few times a day, she says: FRIENDS!?! It is very hard to explain the concept of "waiting list" :-)
One night at bedtime I was talking to Lily about her foster sister, Meredith, and I told her one day we would get together with her so they could still be friends. Lily said, "Morning?!" As in, can we go see Meredith in the morning? Soo cute!
OK -- Hope everyone is having a great weekend! Please say an extra prayer for a friend of ours from this crazy world of Aplastic Anemia, Ethan. He is so little & about to have a bone marrow transplant at City of Hope on Monday night. He has completed his chemotherapy & radiation. Pray for his Mom, Jennifer, that God would give her every ounce of strength that she needs to get through as the full time parent with him at City of Hope. Pray also for his brother, Cole & dad at home in the LA area. My heart just breaks for this journey that none of us would choose to be on. Here is a picture of Ethan & his family, he is on his dad's lap -- please pray!
Wednesday, November 4, 2009
Trip Away
All was well this week with Hannah's blood counts (well still low but not as low as in months past) - she is holding steady to where she was last week. No transfusions needed right now - truly a miracle!
I got away this weekend by myself for my birthday to beautiful Cambria, CA ... here are a few pictures I took & added verses:
All God's best from HOME!!!! :-)
I got away this weekend by myself for my birthday to beautiful Cambria, CA ... here are a few pictures I took & added verses:
All God's best from HOME!!!! :-)
Sunday, November 1, 2009
Precious Treasures: Fundraiser
A dear friend of mine, Satu Prutti Nelson, has a heart of gold & just recently she sent me this original oil on canvas of Hannah & Lily. She painted this out of the kindness of her heart to bless our family.
Isn't this spectacular?
Thank you, Satu - you are such a joy to my heart!!
I am now re-organizing my living room walls to make a perfect spot for this incredible piece of artwork!
But that's not all, I want to do something much bigger & Satu has agreed to help!
Many of you that read this blog have a special love for children, especially orphans. Recently our family started supporting a wonderful organization, Pearl River Outreach, that helps to provide food, shelter & love to children in China before they are adopted.
As a special fundraiser for Pearl River Outreach, I am selling prints of this piece of artwork. All of the funds raised will go directly to Pearl River Outreach.
I am beyond thankful for my two precious treasures & I want to share thankfulness & giving to other children in need!
Below is a link to Paypal for all orders to be processed online. Orders will be shipped & received in plenty of time for the holidays. There are four size prints available -- use the drop down menu to select the size print you would like.
All God's Best --
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