30 July 2012

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!!

29 July 2012

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!

18 July 2012

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. =)

16 July 2012

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. =) 


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!! 

03 July 2012

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!