First Bad Day

Our boy had his first bad moment tonight. He is ok...but it was so sad when he called and was crying and I couldn't hug him because I was at home. ='( His nurse called me later to let me know he had settled down and had fallen asleep...and that everything was "normal". I'm glad he is in excellent hands.


(I am adding the comments from Facebook to some of these posts, because I print my blog once a year and want to remember how much support we have had through all of this! 11-28-12 mj)


Dulcie Larsen If I can do anything to help please let me know!!!!
August 10 at 12:22am · Unlike · 1

Melissa Jensen I will. My sister is here for the month, but if we need extra hands I will call you!
August 10 at 12:26am via mobile · Like · 1

Calista Strasser Laney That must have been tough on his momma.
August 10 at 3:21am via mobile · Unlike · 1

Jennifer Dennis :( I'm glad that he is ok.
August 10 at 3:36am · Unlike · 1

Kathi O'Bannon It's so much harder when you can't 'fix it' ..... ((Hugs)) to ((you)) and to ((Caleb))!!
August 10 at 5:07am via mobile · Unlike · 1

Jennifer Brown It has to be so scary for him. It sounds like he's handling it like a champ, but of course there will be moments when it gets to him. Sounds like you have a good nursing staff, though. Hope he's feeling better today!
August 10 at 5:10am · Unlike · 2

Elisa Likins Hey, Melissa - wishing you and your family the best! You have a cool family - I know your family will pull through this and be even more amazing because of it. <3 nbsp="nbsp">
August 10 at 5:24am · Unlike · 1

Gma Pita God's Peace, prayers and <3 all="all" and="and" for="for" him="him" of="of" you="you">
August 10 at 6:46am via mobile · Unlike · 1

Andrea Thayn Griffin I am so glad the nurse can call and tell you that he was settled down. It sounds like you have excellent care.
August 10 at 6:52am · Like

Steph Alaska What a tough situation but thank goodness for a great nurse! Prayers here for caleb
August 10 at 7:01am · Like

Lori Strikwerda Shepherd That would break my heart.
August 10 at 7:18am · Like

Renee LeAnn Clark My heart aches for you.....Prayers for continued strength and comfort for all of you daily.
August 10 at 7:20am · Like

Marina Robbins Goldthorpe So sad. I am sorry.
August 10 at 7:40am · Like

Heidi Graham Dislike!!!!! My heart is breaking for you.
August 10 at 8:23am via mobile · Like

Mia Wolfe League Oh Melissa....that is so hard. I know you wanted to be there with Caleb and hug him. I am glad that the hospital staff is good with him.
August 10 at 8:53am · Like

Jana Krout Pierce Oh that just breaks my heart! I'm so sorry you guys are going thru this! You all are in our thoughts and prayers!
August 10 at 4:47pm via mobile · Like

Heather Tucker I am so glad too. Hang in there.
August 10 at 6:29pm · Like

Tannis Bingham Kearns sniff, sniff....so hard. We are rooting for him! Can you imagine how are this would have been if you all were still stationed in Juneau though? I think it is so amazing how you moved back to hawaii and so many amazing things have happened....you guys are awesome.
August 10 at 10:02pm · Unlike · 1

Laura Tucker Oh, poor guy!!!
August 12 at 9:31pm · Like

Day 2 - Starting Medication Therapy

Breakfast on Day 2.  Significant progress has been made on the Millennium Falcon.

First dose of chemotherapy!  10:52 am

Day 1 - Double Lumen Hickman

Today was Caleb's first day at Kapiolani.  We took him in to have a double lumen Hickman placed in his chest.  A Hickman line is "a central venous catheter most often used for the administration of chemotherapy or other medications, as well as for the withdrawal of blood for analysis. Hickman lines may remain in place for extended periods and are used when long-term intravenous access is needed."  Double lumen means there are two tubes coming off of the catheter.  They can be single or triple too...

Getting ready for the surgery

He was put under general anesthesia and the procedure was done in about 30 minutes.

I went to sleep and woke up with this tube sticking out of my chest

He still had some of the orange antiseptic on his neck after the placement.

101 Ways To Die

This week we attended all of rest of Caleb's pre-op meetings at the hospital.  On Tuesday, we met first with a financial adviser at the hospital.  We are very fortunate to have very good medical insurance.  We will have to pay a co-pay for every day that Caleb is in the hospital, but we will not have to come up with any insane amounts of money to pay for this procedure to happen.

Next, we went up to the Pediatric Ambulatory Unit (PAU) to meet with the doctor's who will be harvesting bone marrow from Brooklin next Tuesday (the 14th) and then immediately transfusing it into Caleb later that day.  The doctor prefaced his 90 min speech to us, by telling us that if he didn't scare us...he wasn't doing his job correctly.  He then proceeded to explain every complication that could go wrong with a bone marrow transplant in great detail.  He would pause periodically and ask us if we had any questions.  We were listening intently, and nodding appropriately...but didn't have too many questions.  Towards the end of the 90 min lecture, I think the doctor felt that he wasn't making enough of an impression on us so he started using foul language to punctuate the bad things that could happen if the transplant had complications.  Darwin finally told him that many of the things he was discussing could happen to any of us randomly anyway and that we were all going to die someday anyway.  The doctor kind of calmed down after that and wound up the meeting so we could take a 10 minute lunch break.

Before the doctor finished his speech, Brooklin had started scrolling through the LDS Music app on her phone.  She had a line from a hymn running through her head and was trying to figure out what the rest of the song was.  As soon as the doctor left, she told me the line and asked me what the song was.  She was thinking of  Hymn 128, When Faith Endures.

I will not doubt, I will not fear;

God’s love and strength are always near.

His promised gift helps me to find

An inner strength and peace of mind.

I give the Father willingly

My trust, my prayers, humility.

His Spirit guides; his love assures

That fear departs when faith endures.

It is amazing to me that she was able to connect that song with the feelings she was experiencing!  She knows God has a plan for each of us and that faith and fear cannot exist together.  The Holy Ghost spoke those words to her and she knew that regardless of whether or not anything "bad" happened, everything would be ok, because it was part of God's plan.

After our ten minute lunch, we met with the child life specialist.  I think we all enjoyed our visit with her.  She wanted to get to know us a little and then find out what kind of things would help Caleb beat the boredom of being confined to a hospital room for a month.  She told him they could decorate his room and that they could use some of his favorite things (like Star Wars and Harry Potter characters) in some of his rehabilitation activities (occupational and physical therapy).  She also said it was her job to learn to play his favorite video games if no one was there to play them with him!  Another thing she suggested was using one of the hospital's iPads to "attend" seminary via FaceTime to help him keep up with his class!  We hope they can get the WiFi in the church building up quickly!

After the meeting with the child life specialist, we took a tour of the unit where Caleb will be spending his hospital stay.  The rooms in that wing all have a double set of doors.  Going through the first door puts you in a small entry room.  It has a sink, microwave, refrigerator, and cupboards for anything we want to store.  Anyone visiting will be required to be very healthy, over 12 years old, and will need to wash their hands and arms (up to the elbows) for two solid minutes.  Anything brought for Caleb to handle must be wiped down with a Clorox wipe.  After scrubbing down, you can go through the second door into Caleb's room.  The door has a special airflow control so that none of the air from the hall can come in the room.  When you open the second door, the displaced air always flows out into the entry room...and the air from the entry room door to the hallway also flows out (into the hallway) so that the air in Caleb's room stays sterilized and at a set temperature.  He will not be allowed out of his room for the extent of his stay.  (This is because his body won't have any immunity initially...and then will be building new immunity as the stay progresses.)

When we got home that day, I found a quote online that kind of summed up my feelings for the day.

"None of us makes it through this life without problems and challenges-and sometimes tragedies and misfortunes. After all, in large part we are here to learn and grow from such events in our lives. We know that there are times when we will suffer, when we will grieve, and when we will be saddened. However, we are told, "Adam fell that men might be; and men are, that they might have joy." How might we have joy in our lives, despite all that we may face? Again from the scriptures: "Wherefore, be of good cheer, and do not fear, for I the Lord am with you, and will stand by you." --President Thomas S. Monson, "Be of Good Cheer", April 2009 General Conference

Thursday we went back for more...

This time the doctor gave us an hour speech on, as Caleb called it, "101 ways to die".  This was their way of trying to prepare us to consider that everything could go wrong and Caleb could die from any of the number of complications he described to us on Tuesday.  His goal Thursday was to make us cry...

Brooklin did cry...but not because she was worried about Caleb dying.  She told me after the meeting that she was sad for the people who had to go through all those different complications (and they were many in number and very painful sounding) and did end up passing away.  She did get a little emotional too, because the doctor was describing every detail of what the complication would do to Caleb.  We kind of felt he went a little overboard again...but he did not use any foul language at this meeting.  I'm guessing it was because we met in the hospital's chapel and the chaplain was at the meeting. ;)

The doctor was sort of proud of himself for getting one of us to tear up.  I stopped him and told him that we trusted that they would do everything they knew to take care of Caleb to the best of their ability and knowledge and that we "got it".  I told him that we believe that everyone has a period of time to be on earth, and that nothing they do or we say was going to change that amount of time...and we were ok with that.  I'm not sure if he thinks we don't really believe him that things could go bad or if we are just naively optimistic... but we are relying on our faith in Jesus Christ and Heavenly Father to get through what ever we need to get through.  They have sent us so many immediate blessings in the past two months, I have not been able to count them!  I know that whatever happens...our family will be ok, and we will have the love of God surrounding us.

After the scary meeting, we ate lunch and then waited around for an hour to meet with the dietitian.  She explained (in Asian-English) the strict diet Caleb would need to follow over the next few months.  It is very similar to what he is doing now with a few modifications...and I'm glad they will be helping him follow  it for the first month.  =)

After the dietitian, we went to visit the hospitals child psychologist.  She just chatted with Brooklin and Caleb separately and Darwin and I together to get a feel for how we were handling everything.  She said we seemed to be taking everything well, and that the visit was just a formality and get a baseline to go by if anyone needed any help with their feelings.  She was very nice.

This is pretty long now, so I will save the rest for another post.  Caleb's central line surgery is this week...as is his chemotherapy!! 

Here we go!!

London's 12th Birthday

London had a fun birthday...even though it was on a fast Sunday!  She graduated from Primary and is loving going to Young Women's with Brooklin, although I'm not sure Brooklin is at the same level of "loving" her in there with her...lol. 

London got a Princess Bride book from Isaiah, a sewing kit from Caleb, a friendship bracelet kit from Brooklin, girly Lego's from Dad, and a funny t-shirt from mom.

We love you London!!

Before The Storm

I was just going through and transferring some pictures from my camera to my computer this afternoon.  I found some pictures that kind of got forgotten because our focus has been on helping Caleb get the medical attention he needs and caring for our new baby.  The photo above was taken on June 3rd...London's 12th birthday.  I never got around to posting about her birthday, because June 4th was the day we took Caleb to the doctor for the first time and had the sudden realization that something was very wrong with him.

I was just noticing A) how similar Caleb's and Darwin's feet are in this picture, and B) how very pale my boy was.  I've never really noticed that they both cross their feet the same way, or even that their feet looks so much alike.  What I did notice was how pink Darwin's toes are...and how drained of color Caleb's toes are.

I'm so glad Heavenly Father was watching out for him, because we know that this blood disorder did not come on all at once.  He had been looking pale to me for several months, I just didn't ever think it was anything to call the doctor about.  One of the nurses that cares for Caleb told me that kids are pretty resilient...their bodies can compensate for quite awhile when something like this happens.  But...there is a point where their bodies can't handle it anymore and they go downhill pretty quickly after that.

His initial blood counts on June 4th were:

White Blood Cells: 3.0 - A normal person's WBC is between 4.3 and 10.8, meaning they have between 4,300 and 10,800 white blood cells per cubic millimeter (cmm) in their body.  Caleb had only 3,000 white blood cells per cubic millimeter.

Hemoglobin: 4.7 - Hemoglobin is the protein molecule within red blood cells that carries oxygen and gives blood its red color. Normal range for hemoglobin is approximately 13 to 18 grams per deciliter for men.

Platelets: 6 -  Platelets play a vital role in blood clotting. Normal range is about 150,000 to 400,000/ cmm...Caleb only had 6,000.

ANC: 210 - ANC stands for Absolute Neutrophil Count.  Neutrophils are key components in the system of defense against infection. An absence or scarcity of neutrophils (a condition called neutropenia) makes a person vulnerable to infection.   Normal ANC is 1,500 or higher; a "safe" ANC is 500-1500; a low ANC is less than 500.  Caleb was (and still is) very neutropenic.  This is why he has to wear a mask in public, has very specific diet restrictions, and has to take antibiotics three times a week. 

I hope to be able to catch up on some of the regular life posts soon...  We have 3 1/2 hours of meetings at Kapiolani on Tuesday to meet with the transplant doctors, the child life specialists, and to take a tour the floor where Caleb will be staying. Thursday, we have another 3+ hours of meetings with the transplant doctors, a dietitian, and a clinical psychologist.

Other than that, the Jensens are doing good.  London and Isaiah start school tomorrow.  Isaiah is beginning his last year in elementary!  Caleb is supposed to start tomorrow, but he will be at home...until January.  I feel bad that he has to miss out on half of his freshman year.  Brooklin is supposed to start school on Tuesday...but won't be able to go because she has to be at the meetings at Kapiolani for transplant stuff.  She will be able to go Wednesday though. =)  Kalia is a cute little muffin.  She is seven weeks old today and we love her so much!

57 Vials Of Blood

This morning we all got up bright and early and drove to Tripler to drop off a certain 24 hour collection jug to the lab there.  From there, we drove to Kapiolani hospital so Caleb and Brooklin could have their first set of labs drawn for the transplant.  When the lady behind the desk handed the kids their lab stickers printout...they both looked a little concerned!  Brooklin had to have 27 vials of blood drawn and Caleb had to have 30 vials of blood drawn!  

Poor Brooklin got a little woozy and had to drink two boxes of juice.  Caleb on the other hand is so used to walking around on empty that it didn't even phase him.

This is just Brooklin's pile of blood samples!  Caleb's had three more than this!

   

After the blood draws, we went back up to the PAU (Pediatric Ambulatory Unit) and had a meeting with the director of the transplant unit and one of the nurses.  They didn't really tell us anything new, but we did get a printed schedule of events for the transplant.  We have several more meetings and appointments to make in the next three weeks before Caleb goes in for his catheter surgery/chemotherapy/transplant.

One of the things we did find out is that Brooklin will NOT have to have the shots to make her body over-produce stem cells!  Yeah for less pokes!  The shots were only if we were doing the stem cell collection (the one that had to be done in Seattle and was like donating platelets), because she will be having an actual bone marrow harvest...which involves two big needles being poked into her hips and being completely knocked out for a few hours.  They have promised her plenty of medication so she won't be in too much pain.

After visiting with the doctors, Darwin took Brooklin home so she could go to the high school and pick up her schedule (school starts in 12 days!) and get her school pictures taken, and the rest of us (minus London who was babysitting for one of our neighbors all morning) went back to Tripler for a dental appointment for Caleb.  They really are checking him out good!

Tomorrow, we have to take Brooklin to Tripler to have another blood test done so she can donate blood to herself next week (poor girl has to be poked again!) and Friday, Caleb has to go in to have another blood count done.  We are fully expecting that he will need another red blood cell transfusion because today they told us that his hemoglobin was getting low.  Also on Friday, Brooklin will be going on an all day excursion with the Aloha Ambassador program from her school.  She was accepted into this leadership program at the end of last year.  From the Aloha Ambassador website:  

LHS Aloha Ambassadors are current students at LHS who exemplify strong leadership skills, open minds and friendly, positive attitudes.  Our Ambassadors greet new students as they enter LHS, conduct campus tours and serve as a friendly face amongst our student body.  Most of our Ambassadors have had first-hand experiece at being the "new kid on the block" and are dedicated to helping new students feel welcomed.  LHS is very sensitive to the particular needs of a transient student population.  In response to these needs, the LHS Transition Center was established in 2005 to better meet the challenges faced by transitioning students. Each year, the Transition Center welcomes approximately 250 new students, over half from military families.

The Aloha Transition Center mission is to:·     Provide a personal, friendly welcome to each new student.
·    Offer new students the opportunity to connect with peers.
·    Inform students and parents of the school's quality educational services and of opportunities to become involved.
·    Provide on-going support to new students and communication with parents.
·    Alert faculty and administration to the sensitivities and vulnerabilities faced by transitioning students and families.·    Offer new students the opportunity to connect with peers.·    Inform students and parents of the school's quality educational services and of opportunities to become involved.·    Provide on-going support to new students and communication with parents.·    Alert faculty and administration to the sensitivities and vulnerabilities faced by transitioning students and families.

I think that is enough of an update for now. =)  There is more, but I will save it for later... other duties need to be met. =)

Kalia - 1 month old

Anatomy of a Platelet Transfusion

Caleb went in this afternoon for a platelet transfusion.  The platelets have to be radiated (which takes 4 hours because it involves shipping the platelets back and forth to another hospital for the radiation) to "kill" any white blood cells.  Because his immune system is so weak, any foreign white blood cells would cause a huge problem.  We like platelet transfusions because they can be done in the doctor's office and only take 30 minutes to transfuse, once the preliminary stuff is done.


First, Caleb has to have an IV line put in.  Just for a reference point...he was stuck with needles three separate times today.  Once for a blood draw so they could see if he needed a transfusion, once for another test that was ordered after the first blood draw today (and which actually didn't work out and they ended up getting the blood for that test later in the day when we went back for the transfusion through the IV line), and once for the insertion of the IV line.

As you can see...the nurse that put in his IV had her own IV line just a few days ago for a procedure!  See her nice big bruise? ;)  Also, you can see that Caleb definitely needed a platelet transfusion.  There is blood on the floor, all over the pillow, and there is even a spot on his jeans.  There is no way for his blood to clot, so when the nurse poked him, the blood just kind of went everywhere!

This is the first time I have seen a platelet transfusion.  I didn't know that platelets were yellow!  Caleb said it feels really cold going in...but other than that, he doesn't notice much because he is playing on his Nintendo DSXL.

After the transfusion, we actually had to go to the lab to pick up a 24 hour collection container (don't ask...he doesn't want to talk about it), some oral antibiotics to clear up an out-of-control pimple/zit/acne something on his cheek (it is seriously 2" long and 1/2" across!!), and then he had to get a chest x-ray to make sure his lungs are good for the transplant.  We had a full day...and I'm glad we got to eat dinner together and have a great family home evening prepared by Darwin!

Dates and a Confirmed Donor

We started our day (Thursday, July 12th) by taking Brooklin to cross country practice, Caleb to Schofield to have his blood drawn for blood counts, and London to the middle school for summer band..all before 9am!   When the doctors called us back with Caleb's blood counts, they had a lot of information for us.

Caleb has a date for his transplant!

First, the test we were waiting for was for a virus called CMV.  Caleb is CMV negative, so the doctors needed to know if either of the girls were CMV negative because that would make them a better match.  And through some miracle...BOTH girls were CMV negative!  Heavenly Father is really watching over us through this whole thing!!

Caleb will be admitted to the hospital on August 8th to have his chest catheter inserted.  The chest catheter will be used to transplant the bone marrow.  The following four days, (9th, 10th, 11th, and 12th) he will have chemotherapy to destroy all of his remaining bone marrow before the transplant.  He will have one day of "rest" on the 13th, and then Wednesday August 14th he will have his bone marrow transplant.  Brooklin, who is the confirmed donor (as of today!...July 16th) will also go in on Aug. 14th to have her bone marrow harvested before the transplant.  

In order to get ready for the transplant, the doctors have to check Caleb out from top to bottom.  Today he went in for a blood count and one other blood test, an echocardiogram, an EKG, and a pulmonary test.  He also has to have his 5th platelet transfusion this afternoon.  Tomorrow he has an audiology appointment.  Wednesday, both Caleb and Brooklin will go in to Kapiolani to have some blood work done.  Also sometime in the next week or so, Brooklin will go in to donate a bag or two of blood to herself, to be transfused back to her after the bone marrow harvest so she can recover quicker!

Having an echocardiogram.
He did not want me taking his picture, so I covered him up a bit with photoshop. =) 

EKG

Caleb will be in the hospital for about a month after the transplant to make sure that he doesn't have any bad reactions and so they can make sure that the transplant worked and he is making his own cells again...which consequently will all be genetically xx instead of xy since he will have his sisters bone marrow!  =)

Transfusions 6, 7, and 4

Caleb went in on July 6th to get transfused with his 6th and 7th bag of red blood cells and his 4th bag of platelets.  It was supposed to be pretty straight forward, but the blood bank did not communicate with the doctors and what was supposed to take five hours ended up taking about 11 hours.  The doctors told us that they were ready for him, and that they had already radiated the two bags of blood for the transfusion.  The blood bank noticed that the radiated blood was three days away from expiring, so they sent two new bags off to be radiated (which takes 4 hours) and failed to let anyone know.  Consequently, Caleb and Darwin had to sit in the hospital for several hours waiting around for things to happen...which made them both grumpy. =P

At Tripler for another transfusion

Anyway, Caleb got what he needed and didn't have any reactions, so he was able to come home really late Friday night.  While he was being transfused, Darwin and I went out to P.F. Changs to celebrate our 18th wedding anniversary, which was July 8th.  So glad we could sneak a date in and so happy that I've been married to such a great man for 18 years!! 

The Adoption Quilt

This is the birth/adoption announcement I created for Kalia.  (She is four days old in the photo).  I wanted to share the story about the special quilt she is laying on.

About a year after we started filling out the initial paperwork for adoption with LDS Family Services, I decided that I wanted to make a quilt for our birth mother.  My mother-in-law came to visit us in Jan. 2008 and taught me how to do something called quilt-as-you-go quilting.  She actually made us a quilt using this same pattern in reds, pinks, purples, and white.  She did most of the hand sewing on the plane ride from Idaho to Maui, and then gave it to us for Valentine's Day that year.

I found the original post for when I started making the quilt for our birth mom back in May 2008.  Here is an excerpt from that post. (with any clarification in parenthesis).

 I got the idea (for this quilt) while I was reading another couple's (adoption) blog.  The wife had made a quilt for their birth mom. I went out that same night and bought my favorite fabric at the "expensive" fabric store. I am using the design my mother-in-law used on the quilt she made for us for Valentine's Day, because when I was telling someone what the design was, I said it had hearts and leaves on it. When I said it out loud, I thought wow, I guess that would be how a birthmom would feel when she placed her baby in the arms of another family...like part of her heart leaves. London (who was almost 8 at the time) was asking me why I was making the quilt for the birth mom, and I told her that there would be days when the birth mom would be really sad, and sometimes when your sad, it is nice to be able to wrap up in a blanket. London asked why she would be sad, and I said, "Well, she will probably be sad that she couldn't keep her baby, and she will probably miss the baby as well." London got kind of concerned, and said, "Why can't she keep her baby?!" It was kind of a realization for her...she made the connection that if we got to have a new baby in our house, that it meant that another girl would have to give her child to us. I told her that sometimes the girl isn't ready to be a mom, because she is around the same age as the girls who come to babysit for us. She didn't know that girls could have babies at that age. I also told her that sometimes adoption is the best plan for the baby, even if the mom is old enough to have a baby.


I finished the quilt for our birth mom in April of 2009.  We moved from Maui back to Juneau right after I started the quilt, and then I started school and didn't have a ton of time to dedicate to "fun", so it took me a little longer to finish than it normally would.  The quilt I made for Kalia's birth mom was bigger than the one she is pictured with...but I don't know that I ever took a picture of it when it was completely finished.  The original layout looked like this, before any of the pieces were attached to each other.

I also found this photo that has the finished quilt in it...but the picture was actually taken as an assignment for one of my first photography classes.  The assignment was to take a self portrait that told something about me.  I had originally cut out four more complete blocks, but later decided that I didn't want the quilt to be square, so I just put all the pieces in a zipper bag and tucked them away in my craft supplies. The pieces spread around on the floor are actually the pieces I used to make Kalia's quilt.

  

As soon as we got home from meeting Kalia's birth mom for the first time, I pulled out the four remaining blocks and made Kalia a little matching quilt.  I read on another person's adoption blog (at some point over the past few years) that it was a good idea to take the baby's picture at regular intervals with the same item, so the birth mom could see how much baby was growing.  In the blog I read, the people used a large stuffed animal in all their update photos.  I plan to take Kalia's picture with her quilt each month on her birth-day so her birth mom can see how big she is getting and be able to kind of match it up with the big quilt I made for her.  The squares are the exact same size, only the finished size of the quilts are different.

Good-bye Hilo...Hello Home!

After visiting a little longer with Kalia's birth mom, we loaded her up in our rental car and headed to the airport around 2pm.  Our flight wasn't until 8:30 pm (because we didn't know how long everything would take), but we were able to talk one of the ticket agents into getting us on stand-by for a 4pm flight!

  

First car ride!

Waving good-bye in the Hilo airport

Kalia was good for the whole flight, she just slept a lot.  After we landed, we went to get some dinner and then headed home.  We were excited to surprise our kids, because they weren't expecting us to be back until around 10pm.  We drove in the driveway, set her car seat on the front porch, rang the doorbell, and hid.  They were very surprised!  It felt so good to finally be home with our tiny girl!  Everyone loves baby Kalia and she is always in someone's arms!  We are so glad that she is finally here!!

First picture of all five kids!

Moving Forward...But Not Moving!

We went in today to meet with Caleb's doctors.  It was a little funny, because we took the whole family (since it kind of involves everyone) and we could hear the doctors out in the hall while we were in the waiting room talking about how we were going to need a conference room for our meeting!  (Which we actually did!)  In attendance were Caleb's two doctors, one neonatal doctor to act as an advocate for the girls, the child life specialist, the child psychologist, and the pediatric nurse who does the blood draws...oh, and the seven of us!

This is what we learned.

Both girls are still in the running to be Caleb's donor.  Both Brooklin and London match all 10 markers that they test for...meaning that Darwin and I made three exact copies (blood marrow wise) in a row!  They drew blood from both girls today to test for some more matching type things...like blood type...and to basically match whether or not they have had the same type of viruses/sicknesses.  Neither of the girls have ever had a blood draw before, so they were both pretty nervous.  Lucky for them, Caleb requested numbing patches for everyone so they really couldn't feel much of the poke!  ...and Isaiah was glad he didn't have to have his blood drawn.

Second, the doctors told us they had contacted Kapiolani Medical Center here in Honolulu, and they said they would be happy to do his bone marrow transplant here!  This means we don't have to pack up and move for Caleb to get the treatments he needs!  I, for one, am so excited that we will not have to throw an unexpected move in to our already crazy lives!  I mentally prepared myself for them to tell us we were going to have to move and that I would be ok if that were the case...so I was really happy when they said we could stay here!

We called KMC right after we left Tripler to pre-register Caleb there so we can move on to the treatment phase of this plan.  There are two ways to harvest bone marrow from a donor.  One way is very similar to donating platelets.  They take the blood out of you (through a catheter), run it through a machine that selects out the stem cells, and then returns the rest of your blood back to you.  The catheter would be put in and removed under a general anesthesia. This procedure was available in Oahu until just recently, when Hawaii's Medical Center closed due to bankruptcy issues.  If this is the preferred treatment, the donor and one parent would be going to the mainland for a week or two to have the harvesting done. 

The other way would be for the doctors to physically go in with two large needles (one on either side of your back in the hip area) and draw out actual bone marrow.  The donor would be put to sleep and would end up with two tiny freckle size scars on their lower back and be a little sore for a few days. They said they are able to do this type of harvesting here on Oahu and that it would take a day or two to do it this way.

Either way, ten to fifteen days before the harvesting is done, the donor will need to have a shot everyday (for the 10-15 days) to make their bone marrow over-produce so there is enough to harvest.  They said these shots would be similar to an insulin shot and would be with a tiny needle just under the skin.

The doctors didn't discuss the actual bone marrow transplant in very much detail (since KMC will be doing that part) but did say that it is very similar to getting a blood transfusion.  Caleb will be getting a semi-permanent catheter line put in his chest before too long and this way they can do any future transfusions, blood draws, and the bone marrow transplant though this and he wouldn't keep getting stuck in the arm with needles.  When everything is said and done, they will remove the catheter.

The tentative timetable for the actual transplant should be somewhere around late July or early August, but we won't know for sure until we get more of the pre-transplant stuff done.  The doctors said time in the hospital could be a month or longer for the initial transplant and that after that, the average time for Caleb to start attending group functions (school, church, etc.) would be about 100 days.  He will have to be set up with a home tutor and probably a hospital tutor to keep up with school once that starts.

So that is most of the news we learned today.  I'm going to call it a great day and just keep taking it one day at a time.  I am so grateful for your continued support and prayers for our family!  We really can feel the lord's arms around us!

Questions About Adoption

Lots of people have asked us questions about Kalia's adoption, and I wanted to answer them here.  We don't mind answering questions...in fact if you have any, please ask us!  We didn't know ANYTHING about adoption when we started this journey 5 1/2 years ago, but we have learned a TON since then.

1. Do you have an open adoption? / What is an open adoption?

YES!  We enjoy an open adoption with Kalia's birth mother and her children...and in the future, if it turns out to be healthy, we would like to have an open adoption with her birth father and his family as well.  In our case, open adoption means we know and have met Kalia's birth mother "V" and her four birth siblings.  We talk with V on the phone every few days, we text each other, and I post pictures on Facebook for V to see how baby is doing.  V's birthday was this past week and we called her on her birthday and sent her a present in the mail. V has asked for pictures and that is all she wanted.  She told us that she didn't want to make us visit her or require specific numbers of letters or hoops to go through; she just wanted pictures.  We get to work out how open our adoption is with V, and do what works best for all of us.  There really aren't any "rules" for how we interact with V.  We love her and her kids very much and I think that keeping in regular contact with her is healing and comforting for her and will be therapeutic for Kalia as she gets older and is able to understand how she came to be part of our family and who her birth mother is and why she chose to place her in our family.

2. Did you get to choose Kalia's name or did the birth mom name her or did she suggest any names?

Kalia's birth mom is amazing!  She asked us on the day we flew over to meet her for the first time what we wanted to name our daughter.  She told us that if we wrote it down for her, she would put the name we chose on the birth certificate for us so we wouldn't have to change it later!  She told us she knew we were the one's to raise her baby and she wanted everything to go smoothly for us!  She did exactly that.  We have the original hospital birth certificate that says Kalia Willamina Jensen on it!

3. Did you use an adoption agency?

We chose to use LDS Family Services to adopt.  Our adoption worker's name is Sally Lee, and she is one of the most amazing, hard working ladies you will ever meet.  She is also one of the happiest, friendliest, bubbly people on the planet!

When we initially applied for adoption over in Maui, there were not as many dis-qualifiers as there are now.  We had to go through a pretty intensive screening process and fill out almost more paperwork than we did to buy a house!  Some of the basic qualifications were that we had to provide financial information, be married two years, have a current temple recommend, and pass all the state's requirements for an adoption.

We got a letter in the mail almost two years ago that said couples seeking to adopt with LDSFS:

 "must seek professional medical assessment and treatment for infertility prior to applying for infant adoption.  Documentation must be provided by a licensed medical physician.  If either partner has had an elective sterilization procedure, adoption manager approval is needed."

AND

"A couple may apply for infant adoption if they have two or fewer children."

We can see now that Heavenly Father had to get us in this process early, because we would not be eligible to adopt through LDSFS today if we had not already been clients!

4. How much does it cost to adopt?

The initial fee with LDSFS is $1000, which counts towards your final adoption fees at placement.  LDSFS adoption fees range from a minimum of $4,000 to a maximum of $10,000 based on 10% of your combined gross annual income as reported on your previous year's taxes.  Many (if not all) other domestic infant adoption agency fees tend to be between $25,000 and $45,000!  The reason for the difference in price is that the Church of Jesus Christ of Latter-Day Saints subsidizes the adoption fees through a grant for members who are qualified to adopt through LDSFS.

5. Does the birth mom have to be a member of you church?  Will they try and convert me to your church?

NO!

LDSFS does not require anyone who is considering an adoption plan to be a member of the Church of Jesus Christ of Latter-Day Saints (or Mormon).  They will also not proselytize to you or try to convert you in any way.  They offer free counseling to birth moms, birth dads, and birth grandparents!  They will not lock you into an adoption plan.  If you change your mind about placement or if you just have questions, they are there to listen and answer questions.

To find out more about LDSFS, please visit https://www.itsaboutlove.org