28 June 2012

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!

27 June 2012

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."


"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?


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

Placement Day

I haven't posted about this yet, because it was such a sacred experience it is hard to put into words.  There really were angels in the room with us at noon on June 12, 2012.  I think for now I will just post some photos and then tell you a little about how we chose Kalia's name and what it means.

Kalia's name:
A few days after learning that we were going to be parents again, I pulled out our copy of Hawaiian Names English Names by Eileen M. Root to look for a Hawaiian name for our daughter.  She technically isn't Hawaiian at all.  Most of her genetic makeup is Micronesian.  Her birth mom is from the island of Kosrae in Micronesia and is 3/4 Micronesian and 1/4 East Indian.  Her birth father is also Micronesian, but we don't know a lot about him.

The name I was drawn to in the book was Meakalia which means "The waited for one".  With five syllables, we would most likely shorten her name and I wanted to make sure when we shortened it, we didn't alter the meaning of the word...which can happen very easily with Hawaiian words.  I have a friend on Maui who is a Hawaiian language expert, so I emailed her and ask for her advice.  She wrote, "Naming is so important, especially Hawaiian names.  I'm so glad you asked for guidance.  I would suggest not using mea at all.  It has too much negative connotation to it.  Kalia is beautiful and perfect as it is."

I have a Hawaiian dictionary, so I looked up the pieces to her name.  Ka means the, and is used with most Hawaiian words.  Li'a means strong desire, yearning or to yearn for.  Kali means to wait or hesitate.  We started this adoption process five and a half years ago and have been praying and waiting for this sweet little girl for a long time!  This was why we chose to name her Kalia.  Partly for the meaning of the name and partly because she was born in Hawaii and has a Pacific Islander heritage.

Kalia's middle name is Willamina.  Her middle name was chosen to honor two of her ancestors...one adopted and one birth relative.  My grandmother who passed away in May was named Wilma.  We received the news that Kalia would be joining our family on the day I arrived home from attending my grandmother's funeral.  We feel that my grandmother had a hand in helping Kalia find her way to our family.  Kalia's birth grandmother (who passed away a few years ago) was named Cathmina.  Our birth mother named her three year old daughter after her mother, so Kalia's birth half-sister is also named Cathmina.  We wanted her to have a connection with her birth family as well as with her adoptive family, so we chose Willa to honor her adoptive family heritage and Mina to honor her birth family heritage.

18 June 2012

Kalia's Birth Day

At 5:27pm on Sunday June 10, 2012, I got a call from the woman who drove our birth mom to the hospital. It was only a two minute phone call...but it was one of the most amazing phone calls I have ever received.  She said, "Hi.  This is Nancy.  I just called to tell you that your daughter is here and she is beautiful!  They haven't weighed her yet, so I don't know anything else to tell you, but she is here and she has a lot of hair.  I'm going to go now and call Sally to let her know.  Bye!"  (Sally is our adoption worker).

I was so excited!!  I called all the kids in (Darwin and Caleb were out home teaching) and told them that baby Kalia had just been born.  When Darwin got home, we texted our families to let them know, and then waited for a call from Sally to let us know what to do next.

At 6:16pm I tried calling Sally, but her phone went straight to voice mail so I left her a message.

At 8:31pm I tried calling Sally again...but again, her phone went straight to voice mail. I was a little worried...ok maybe a lot worried, so I looked up her home phone number on facebook and tried to call her at her house.  Her husband answered and told me that she had guests and that she would call me back in about 10 minutes.

She never called me.

Needless to say, I did not sleep at all Sunday night!  Adoptions are tricky things and can unravel fairly quickly...especially right after birth...so I had crazy dreams all night long!  The next day, I got up early to take Brooklin to cross country practice.  I checked my email on my phone and found an email from Sally that had been sent at 3:34am.  This is the email:

Melissa, it's 3:30 a.m.  I just checked my voicemail and found out V***** gave birth!!! It's Monday morning. I'm so sorry! My phone was dead today so I charged it up late tonight.

The baby will be discharged on Tuesday after about 48 hours or could be a few hours less..
Let's plan for a Tuesday placement.
I will call the hospital in the morning and see when the baby will be discharged. I'll let you know.  You can fly in and fly out on Tuesday.
I could take a carseat with me t o make things simpler.

I will contact you tomorrow.
CONGRATULATIONS!!!!  the big day is here!!!
Love, Sally

I had kind of wondered if her phone had died!  She told me later that she had guests until 10:30pm or so, and when they left, she had another person stop by and they stayed up talking story until 3:30am!  Her husband never told her I called and she had no idea that her phone had died!  She called me at 8:04am to let me know that she was trying to get a hold of the hospital in Hilo, but because it was a state holiday (King Kamehameha Day), no one was around that could tell her anything about baby or our birth mom!  She was flying out at 10am to go and visit V***** at the hospital and meet baby.  

I finally got some information on our baby from Sally at 2:29pm on June 11th.  She texted me these four pictures and all the info on baby.

She is perfect!!!  7 lbs 10 oz. 19 1/4".  5:17pm.  6/10/12.  Eyes wide open.  Kalia looks very Asian.

I was so excited to get pictures!!  We got right on the computer and bought plane ticket to Hilo for the next day, rented a car online, and started packing to go and pick up our new baby daughter!

15 June 2012

Bone Marrow Matching Test Results

Caleb's doctor called us today to give us the results of the bone marrow matching swabs they did on the kids.  It was good news! =)  Not only does he have a sibling match...but BOTH of his sisters are a match!!  Both London and Brooklin matched 6 out of 6 markers that they tested!  The doctor said she had never seen two matches show up like this!  They are going to do another test on the samples to get a best-possible match where they test 10 markers.  That test should take a week, and then we can start on his treatment plan!

Another surprise to the doctors was that they were able to determine what caused the aplastic anemia in the first place.  They originally told us that 70% of the time they never know what causes it...so it was good news that they were able to determine the source.  I am happy to say that in this case, neither Darwin or I passed anything on to Caleb through genetics...so the likelihood of any of our other children getting it is very minuscule. The doctor told me that the cause of his aplastic anemia was called Paroxysmal Nocturnal Hemoglobinuria...or PNH.

From the aamds.org (aplastic anemia and MDS) website:

PNH  is a rare and serious blood disease that causes red blood cells to break apart. Doctors call this breaking apart "hemolysis". It happens because your blood cells are missing a protein that protects them from your body's immune system.
When your red blood cells break apart, the hemoglobin inside them is released. Hemoglobin is the red part of red blood cells. Its job is to carry oxygen around your body. The release of hemoglobin causes most PNH symptoms.
The reason this is kind of good news is now the doctors can tailor Caleb's treatments to this diagnosis and not do a general, blanket type of treatment on him.  The preferred procedure for this condition IS a bone marrow transplant, but they will be able to do some additional precision things that address the PNH. (...and I don't know what those things are right now).
The doctors also told us that Caleb is eligible for a Make-A-Wish, wish!  When we told Caleb, he said, "I'm not dying!"  Technically...he could die from this condition or complications that stem from it if it is not addressed and treated properly.  They told us that he could wish for just about anything and that the wish would be granted after most of his treatments are completed.  They said to make it something big that he would remember for the rest of his life.
We feel so blessed right now!  God is really watching out for us!! Our prayers (and yours!) are being heard and we feel the blessings and comfort of God daily!  Last week was pretty rough, but this week we have received two huge blessings!  Thank you for keeping our family in your prayers!  We really appreciate all of the prayers, messages of support and those near us who have willing served our family!

This picture just kind of reminds me of our last few weeks.  Feeling like we are jumping off a cliff with no parachute and then experiencing an amazing rainbow at the end of our ride! 
Akaka Falls in Hilo, HI

14 June 2012

Five Weeks...In A Very Large Nutshell!

The last five weeks have been so unbelievably crazy!

On May 3rd, my family in Idaho called me to let me know that my dad's mother, Wilma Strasser had passed away.  She was very old and, while being sad that she had passed, we were all relieved that she was finally pain free and reunited with her sweetheart and her baby daughter Irene.  I decided to take London and fly Idaho to attend her funeral, which was to take place on what would have been her 69th wedding anniversary (May 11th).

When London and I flew out on May 9th (Brooklin's 16th birthday) to attend the funeral; Darwin had been working in Maui for 2 1/2 weeks and had 3 days to go, and Brooklin had made it to the state track meet for the 100m and 300m hurdles and was flying to the Big Island for the weekend.  Some friends of ours took Caleb and Isaiah for the few days we would both be gone.  

I am so grateful for the time I had with my dad's side of the family.  We haven't lived near any of them in a long time and it was amazing to just be surrounded by Strassers!  My grandparent have 45 grandchildren, and all but four of them were at the funeral! (Two were unable to make it, one was on a mission, and one passed away in 2005).

We were also fortunate enough to spend time with most of Darwin's family too!  His brother Bill and Bill's wife Shaneen both graduated from Boise State University the same weekend of the funeral, so London and I were able to see Darwin's parents, his Grandma Ray, four of his six siblings, and one of his cousins and her family.

During our stay in Idaho, we celebrated Darwin's 40th birthday and Mother's Day...in which my husband sent me a lei in the mail and won the best husband ever award!

London and I flew home on May 16th.  We got up at 4am Mountain Time (midnight in Hawaii) to catch a 6am flight.  We had a layover in Portland and arrived home at 10:30am in Hawaii.  When we landed in Honolulu, I switched on my phone I had a few text messages and a couple of missed calls.  One of the missed calls was from our adoption worker, Sally Lee.  This is the message she left:

“Hey Melissa.  This is Sally Lee.  Can you call me back?  Um, couple of things…the volunteer work: Margaret is ready to train you. And um, more importantly I need to sit with you and your husband and I wondered if you are coming into town today…or any chance of it…or I can go out to you guys.  Ok, call me. ###-####.  Thanks! Bye!”

I didn’t call her right then, because I was trying to find our bags.  Someone’s duffel bag had jammed up the baggage claim carousel our suitcases were supposed to be coming out of and we only had one of our bags.  I was also texting Darwin updates on which arrival gate he could pick us up at.

We finally got our bag and met Darwin outside.  We talked all the way home and then after I unloaded my suitcases I laid down on the bed and was out like a light.  I was exhausted.  Sometime while I was sleeping, Sally Lee called again.  One of my children answered the phone and told her I was asleep and that we had just returned home from my mother’s funeral. (My mother is fine…they just gave out bad information)

I told Darwin that I would call her later.  I was pretty sure she just needed some kind of paperwork from me.  I sent my LDSFS Volunteer application to their office right before I left on vacation, so I was pretty sure that is what she wanted to talk about…and she mentioned the application in the phone message.  He told me I should call her back anyway…

I called her back and she asked if she could come out to the house and meet with us.  Wednesday nights are not good for us.  Wednesday nights are mutual nights from 7-8:30pm.  Most Wednesdays are also Activity Days for London and Cub Scouts for Isaiah.  I tried to dissuade her a little, but she just kept saying, “Oh, I’m going to be out that way anyway.” so I told her she could come over at 8:45pm.

After having me tell her about my trip and her being relieved that it was my GRANDmother and not my mom who had died…she got down to business.  She said, “Well, we got your volunteer application in, but we are going to have to deny it because you are not going to have any time to volunteer.”  I was a little put off… lol…  I had tons of time!  I was bored at home and knew that they needed help down at the office.

She went on to tell us that she met with a birthmother over the weekend and had dropped off five couples’ packets with her…ours being one of the five…and the birth mother called her back the next day and said she wanted “Darwin and Melissa”.  She only read our packet and one other, so Sally told her to read all the packets before she decided, since this was a very important decision.  The birthmom called Sally back the next day and told her she had read all five packets and still wanted “Darwin and Melissa”. 

At this point, I ask Sally if she is kidding…because we have been waiting five and a half years and I’m thinking that it must be some kind of mistake or something.

She just smiled and went on.  “She wants her baby to have a lot of siblings…she is having a girl…she is due on June 22nd (5 weeks away)…”  and I am just so shocked I just keep nodding along with my mouth hanging open.  It took me until about 30 minutes after Sally left for me to fully process what was about to happen.  I was in the shower and I just started sobbing uncontrollably.  It really sounded like this was going to happen and all the emotion I had been holding in for the past five and a half years just ripped its way out of me.
I didn’t sleep really well that night, and the next day I was so scared it wasn’t real or that something would go wrong that I don’t know what I did all day, beyond running different scenarios and situations through my head.

I called our birth mother on Friday May 17th and talked with her for 15 minutes. She is a really sweet lady who has had a pretty rough life.  She had been taking the missionary discussions for about two months and was going to be baptized on Saturday May 26th!  Darwin and I bought plane tickets and flew over to Big Island to attend her baptism and meet her and her four children for the first time.

We took our birth mom out to lunch at L & L, and just talked and got to know her a little.  After lunch, we went to her house and met three of her four children and her brother who is living with her to help her out.  We had a really good visit.  She just said over and over, "I just have a lot of faith in you.  I know you are the ones to raise my baby."  She was baptized along with her eight year-old son later that evening.  I can't even begin to describe how amazing it was to be able to attend her baptism!  I am so grateful she has such a wonderful ward family to help and support her through this time in her life.

 She told us that she was going to go on a run after her baptism so that the baby would come out while we were there!  hehe!

We flew home that night and knew that this was really real!  We called our families to let them know what was going on.  Monday May 28th was Memorial Day, so we took the kids out and bought a bassinet, car seat, stroller, diapers, wipes, some clothes, and a few other things.  We were really scared to take anything out of the box though... 

Sunday June 3rd, we celebrated London's 12th birthday...and Monday June 4th is when I took Caleb to the doctor and we found out he had a life threatening condition and he was in the hospital for three days...with many months of treatments on the future.  (To read about that go here, here, here, here, and here and as of this moment, we do not know if one of the kids is a bone marrow match yet).

Isaiah celebrated his 10th birthday on June 6th...and the poor guy had to open all his presents in Caleb's hospital room!  Brooklin left that morning for Youth Conference and Caleb was able to come home that evening (we didn't know if he was going to be able to since the diagnosis was still unknown at the time we opened presents).

We had three days of quiet...which we all needed.  We spent that time letting Caleb's situation sink in a little and just taking everything one day at a time...

...Then on Sunday June 10th, our birth mom called us at 12:49 pm to let us know she was in labor and going to the hospital!  

09 June 2012

Piano Recital

The girls had their piano recital today.  Their piano teacher is so cute!  Her name is Yoshie Koga and she is in our ward.

London played "Landler in F major" and "Video Game Challenge" both by Alfred

Brooklin played "Seascape" by William L. Gillock and "Waltz in A minor" by Frederic Chopin

06 June 2012

We have a diagnosis

Caleb has something called Aplastic Anemia.  His specific case is considered severe.  Basically, his bone marrow has stopped producing new blood cells, which has cause him to look pale and have an extremely low blood count.  On the scale the doctors use to measure (and I don’t know what the numbers represent), out of 100, anything below 25 is considered severe…and Caleb’s number is 5.

The treatment of choice for this condition is a bone marrow transplant from a matching family member…meaning one of his three siblings.  All of our children (including Caleb) had their cheeks swabbed this morning and those cell samples will be sent to a lab on the mainland for processing.  Each sibling has a 25% chance of being a match.  Darwin and I were also swabbed, but we will not be a match to him since we each only contributed 50% of his cell makeup.  Our cells will be used to find identifying markers.  This treatment usually “cures” the person, and they will be in remission.

If one of his siblings is not a match, the second treatment choice is a medication therapy.  They will give him medications that will take his immune system down to zero, and then restart it…kind of like rebooting his immune system.  This system is usually effective, but some patients will still require a bone marrow transplant in the future.

The third treatment of choice is having a bone marrow donor to be matched from a bone marrow registry and having a non-relative bone marrow transplant.  I do not fully understand why this is the last resort option, but this is the order I was told treatment would follow, if needed.

For now, Caleb has a very weak immune system and will not be seen in any large gatherings.  He will have to wear a mask if he absolutely needs to be in an indoor public place and he cannot have any visitors who are sick, or might be sick, or have germs…or cooties… ;)  If his temperature is elevated even slightly, he will need to be taken straight to the hospital.  He cannot eat any fresh fruits or vegetables, only cooked, processed, or frozen kind, and he cannot eat anything that may have been sitting out…like at a potluck.  He also cannot eat out at restaurants.  Home cooked or preserved food only until his immune system is a little stronger.  He is not allowed to participate in any “dangerous” or contact type activities. 

Caleb will be going through some difficult procedures in the future, including another blood transfusion next week, having a semi-permanent IV type catheter placed in his chest, and a possible bone marrow transplant.  His treatment plan is expected to last about a year (including follow-up treatments) and there is a small possibility we would have to go to the mainland to have these treatments done…meaning we be medically pcs’ing.  If you want us to stay here…which we think would be best for now…pray for his treatments to be available here. =)

That is all I have for now… and I will work on getting the other updates up on the blog later.  Right now I need to pay attention to my other kids. =)  

05 June 2012

Awake and hungry

We do not have a definitive diagnosis at this point, but the two contenders are Aplastic anemia or leukemia. There were not any leukemia cells present in the results we have so far, but the part of the sample that has to decalcify over 24 hours is not ready yet and luekemia cells could still show up. The doctor is leaning more towards the aplastic anemia, but this is not the final diagnosis. 

If he has the aplastic anemia, he will need a bone marrow transplant, and we will have the other kids tested to see if they are a match. If they are not a match, he will have to do a pill type therapy. This will put him coming home sometime on wednesday. If the diagnosis is leukemia, he will start treatment for that on Thursday.
It could also be something else all together, so we will just have to wait and see. He is feeling much better tonight and is awake and scarfing down his dinner. :)

Bone Marrow Biopsy

Caleb had a bone marrow biopsy this morning at 10:30 am.  They put him to sleep for the procedure, which took about 30 minutes to do.  The procedure was done on his lower back (where the oval shaped bandaids are on his back).  They put a needle into the bone and draw out bone marrow fluid and tissue.

It took Caleb along time to fully wake up from the procedure.  He was really out of it until about 3pm.  This photo was taken around noon.  I asked him if he could give me a thumbs up...he did, but he doesn't remember doing it. =)  During the initial wake-up period, he asked for his dad every few minutes (who left right after he went to sleep to take care of the other kids at home) and he wanted to know what time it was a lot.

04 June 2012

First Transfusion

Caleb was admitted and made it up to his room around noon.  Here, he was looking over the menu trying to decide what he wanted for dinner.  

This board has the goals for going home.
1. Four red blood transfusions
2. One platelet transfusion
3. Observe overnight

I took a picture of how pale his skin was compared to mine.  I know the lighting is pretty bad, but my hand is a normal pink...and Caleb's hand is drained of most color.

Caleb getting his first transfusion.
(He ended up getting only three of the four they initially requested and the platelet transfusion.  He said it didn't hurt too bad but his arm did get pretty sore.)

Caleb's Mysterious Skintone

Just wanted to let you all know what is going on.  I took Caleb into the doctor’s office this morning because he has been looking a little pale for about 2 months.  He also had some weird symptoms over the weekend when he was hiking (chest pain and stiff legs).  The doctor confirmed that I wasn’t seeing things and that he did indeed have a yellowish tint to his skin.  They sent us to get some blood work done to see if that could tell us anything.

We left the doctor’s office at around 8:15 am and drove home.  I took Brooklin and Caleb to their first day of cross country practice at 9am.  The doctor called me back at 9:20am and told me to take him directly to the ER at Tripler Army Hospital and that his blood work was very concerning.

Caleb had started practice with the other kids (a one mile warm-up), but didn’t make it very far.  Two of the guys had to practically carry him back and he was having the same kind of chest and leg pains and was crying and coughing.  I drove him to the hospital and he was admitted as soon as we arrived.  He said he was feeling fine by the time we got to the hospital, but his blood work said otherwise.  The docs told me that ALL of his blood counts were very low…red cells, white cells, platelets…and that is kind of rare.

At this point, he will be in the hospital until at least Wednesday morning.  This afternoon they are going to start giving him one of several blood transfusions and a platelet transfusion.  (He needs a total of 4 units of blood over the next 20 or so hours).  They are also going to do a procedure on him sometime tomorrow to check how/if his bone marrow is functioning.

We don’t know what kind of diagnosis will come from this, so we don’t want to throw out any of the doctor’s guesses at this point, but none of the things they discussed with us are going to be fun.  Please keep Caleb in your prayers.  He has been pretty upbeat so far…he told me he was a cyborg because of all the wires coming off of him…but if any of the worst things are causing this, he will be in for a long haul.

We are doing ok.  We are seriously hoping that our birthmom stays pregnant this week!!  Pray for her too!  She is having some serious back labor and isn’t due until the 22nd, so if she can keep baby in it will be a good thing for everyone!

Love you all and thank you for your prayers!