Blessings in the Midst of Trials

What an incredible series of events.

As Kylene mentioned recently, Jacob's donor had to reschedule the bone marrow transplant date, pushing Jacob's hospital admittance and chemo start date back a bit. We got a call on Monday from a Children's Hospital Los Angeles nurse to let us know that they were switching Jacob's chemotherapy treatment to a "Genetic Disease Unrelated Donor-Reduced Intensity for children less than 40kg," "a protocol from Seattle" that is supposed to have reduced side effects compared to the treatment they were planning to give him.  I wasn't able to find anything about this online, so when I e-mailed the nurse for more information she replied that one of the CHLA BMT doctors we've worked with "is the guiding force for us using this protocol.  She had heard the presentation of the protocol and its results in February at the ASBMT meeting."  Jacob will apparently be the second patient at CHLA to receive this reduced side effect chemo and radiation treatment.

Also on Monday, the president of Northcentral University (where I'm earning my Ph.D.) e-mailed the student body about a new academic leave of absence policy allowing students experiencing hardships to take up to 90 days leave from school, and this policy will take effect next Monday, April 4th—incredibly, the same date as Jacob's admission to the hospital.  A little over a month ago, just prior to the start of my current class, I had asked my academic advisor if there was any way that I could take a leave of absence during Jacob's two or more months in the hospital, but at the time the best the university could offer was a three-week break in between classes, which would not have helped at all since my class started on February 28th.  Now, after receiving this e-mail about the new policy, I replied to the university president and my academic advisor and asked if there was any way that I could take a leave beginning on the date of the new policy, explaining that it was also my son's admission date.  I was concerned that my request would be denied since I'm already in the middle of a class.  However, I was excited to receive a reply from my advisor on Tuesday stating that he had spoken with the university's academic liaison and that she would approve the leave if I submit a request on Monday.

Recently we have looked at a couple of homes to try to find a place we can live on a more permanent basis after Jacob is out of the hospital (for now we are staying with my parents so they can help with Ethan).  As Kylene already mentioned, last week we looked at a house in Alta Loma that seemed to be perfect for our needs in terms of the monthly rent price, cleanliness (which will be important when Jacob is out of the hospital since his immune system will be weak for a year after the BMT), neighborhood, and number of rooms.  I received a call on Tuesday from the owner of the house, and he offered to let us rent it.  We will meet with him on Thursday to sign the papers and get the keys!  It will be nice to take our things out of storage and gradually start setting up our new home.

While some might view these as a series of coincidental occurrences that by random chance happened to work out for our benefit, we know better.  =)  We know that God is mindful of our needs and the trials that we are facing, and we see these blessings as evidence of the eternal love that He, our Heavenly Father, has for His children.  No matter what happens in the coming months, even if things don't work out the way that we hope, we know that we can place our trust in our Heavenly Father's will and know that He has a plan for each of us.

I know that many of you who are praying for and thinking about our family come from a wide variety of spiritual or religious backgrounds.  I would like to share with you an experience of a leader of our church when he was in the midst of extreme trials and persecution in March 1839—172 years ago this month.  He struggled to know why he and others were having to endure seemingly unending and grievous afflictions.  In humility he prayed and pleaded for deliverance, and in answer to his prayer he received a revelation, an excerpt of which follows (emphasis mine):

If thou art accused with all manner of false accusations; if thine enemies fall upon thee; if they tear thee from the society of thy father and mother and brethren and sisters; and if with a drawn sword thine enemies tear thee from the bosom of thy wife, and of thine offspring, and thine elder son, although but six years of age, shall cling to thy garments, and shall say, My father, my father, why can’t you stay with us? O, my father, what are the men going to do with you? and if then he shall be thrust from thee by the sword, and thou be dragged to prison, and thine enemies prowl around thee like wolves for the blood of the lamb;

And if thou shouldst be cast into the pit, or into the hands of murderers, and the sentence of death passed upon thee; if thou be cast into the deep; if the billowing surge conspire against thee; if fierce winds become thine enemy; if the heavens gather blackness, and all the elements combine to hedge up the way; and above all, if the very jaws of hell shall gape open the mouth wide after thee, know thou, my son, that all these things shall give thee experience, and shall be for thy good.

The Son of Man hath descended below them all. Art thou greater than he?

As always, we are so thankful to each of you for keeping Jacob and our family in your thoughts and prayers.  We feel the love and concern you have for us, and we wish we could adequately express our deep gratitude for your kindness and loving support.

Happy Boys

We are down to less than a week now until he gets his line put in. Jacob had 14 vials of blood drawn yesterday. Always a traumatizing event for both Jacob and myself. After the hematologist pulled out the needle and put on his bandaid, Jacob told him "thank you." He melts my heart. One of the tests was Jacob's sed rate (inflammation), which has dropped from 48 over two weeks ago, to 7 yesterday. The steroid treatment seems to have worked and he is back in the normal range (0-10)! This is wonderful news!

I am impressed with how well Ethan has adjusted to having a chronically sick brother. He doesn't get jealous, but rather is very protective of and loving toward his brother. Still I can't help but feel guilty with how much Ethan misses out on because of us trying to keep Jacob from getting sick. We have decided to pull him out of preschool next week and let him do home schooling with grandpa on the days I am at the hospital, and with me on the days that Josh is on duty. He will miss out on the social interactions with children his age, so if anyone wants to do play dates, let me know! I am excited for him to start kindergarten this August.

Other exciting news: yesterday we turned in an application on a rental home! It is a 4 bed, 2 bath single story home. I don't know how long it'll be before we move, but hopefully we are approved and can secure the home. The location is great, right at the end of a cul-de-sac, and it will allow Ethan to be in the Alta Loma School District, which we were also hoping for.

Rescheduled Dates & Wedding Photos

We had so much fun last night at Josh's brother's wedding! We are so glad that we were able to celebrate with them and not be in the hospital on their special day. Ethan and Jacob had a blast on the dance floor. I haven't seen Jacob that wild in, well... ever, actually. He was so funny! Based on his behavior, I dare say he is feeling great. I have a feeling his next blood test will show that his inflammation has calmed way down. We go in this week, so we will see. Anyway, our new admittance date is April 4th and our transplant date is April 15th. Our donor needed to reschedule, so we are happy to comply. We are staying flexible and as for me, I am just enjoying these last couple weeks of having my family together. Please continue to keep our family in your prayers. They lift our spirits and keep us going each day.

New Dates

Jacob's official results on his lung and colon biopsies came back normal! This is good news and means we can move forward with transplantation.

Jacob's sedimentation rate in his blood is 48 and a normal range is 0-10. This indicates inflammation in the body. He is currently taking a treatment of low dose corticosteroids. This is supposed to calm down the inflammation. We will retest his sed rate in about a week and a half. New admission and transplant dates have been scheduled. He is to be admitted to Children's on March 31st, begin his chemo conditioning, and then receive his new bone marrow on April 11th. After that we are looking at a 2 month recovery (at least), which means he will most likely spend his 3rd birthday in the hospital.

We are currently waiting to hear on a date to have his line surgically put in before his admittance date. Josh and I will have to learn how to flush the line and care for it, which makes me nervous.

Jacob used to be a good medicine taker, but has developed an aversion to taking his meds since we've had to introduce a couple of new ones to his regimen this week. I am finding creative ways to get Jacob to take his new medicines, including hiding it in smoothies, yogurt, or even in his morning bowl of Cheerios. Life will be interesting when he gets out of the hospital and will be taking 10-12 different medications. Anyway, things are moving along and Jacob seems to be doing well at the moment, for which we are grateful.

The Next Step

I spoke to the BMT coordinator for Children's Hospital yesterday and she said Jacob's doctors want to postpone transplant for one month while Jacob takes a steroid treatment to calm down his colitis. She said it would be dangerous to do a transplant when there is inflammation anywhere in the body because the new transplanted white blood cells would go directly to the inflamed site and "go crazy" as she put it... That sounds like a bad thing. So for now we are waiting for the redness around his surgery incisions to clear up and then he will start on prednisone. In two weeks, his sedimentation rate (which is a blood test that reveals inflammation in the body) will be retested. Thankfully our donor is fine with waiting. Our coordinator will call us when she has new admittance dates for Jacob.

So far the lung biopsy has been negative for infection. (Yay!) We should hear back on the biopsy culture next week.

Hospital Stay & Cardiology Followup

I can think of so many ways to describe Jacob. He is courageous, brave, kind, patient, long suffering, happy, resilient, caring, and so many other things. My two-year-old son is a good example to me of all of these characteristics. Watching him overcome trial after trial gives me strength and courage to take each day as it comes.

Monday he had an enlarged lymphnode surgically removed from his lung, and then had a colonoscopy on both ends. The lung biopsy required a drainage tube to be left in his side for about 24 hours to make sure he didn't get any swelling. The colonoscopy revealed that his colitis is back, not to the severity it was in '09, but nevertheless, his GI doctor may want to treat it with steroids again. Both procedures were successful, for which we are grateful. We got home yesterday evening and enjoyed sleeping in our own beds last night.

Today we had a followup with the cardiologist who determined that even with the small hole in Jacob's heart, his heart sounded good. He wants us to come in for an annual check up to make sure it doesn't get worse.

So, for now we are waiting to hear what the biopsy on the lymphnode reveals. If Jacob is indeed fighting some type of fungal infection, that will have to be treated and the bone marrow transplant will have to be put on hold. If it turns out to be benign, we will proceed with the BMT, depending on what the doctors decide to do about his colitis. They are in disagreement as to whether that needs to be treated first, or if the BMT is more urgent.

... One day at a time. We will post more when we hear the results of the biopsy.

We are grateful for everyone's continued faith and prayers in Jacob's behalf and have been touched by everyone's kind and encouraging words and deeds. We believe in the power of prayer and have felt added strength to get through each day.

Heart, Lung, Colon

Today I heard back from Jacob's cardiologist with the results from his EKG and echocardiogram that he had on Monday. Apparently, Jacob has a hole in the top hinges of his heart. We are going in for a followup with the cardiologist as soon as they get it scheduled.

Also, Jacob's lung biopsy and colonoscopy/biopsy are going to be Monday. I'm glad they were able to coordinate the two procedures so that he will only have to go under anesthesia once.

Meanwhile, we are pretty much settled in with Josh's wonderful parents. They have already been so supportive and helpful and we feel so grateful to them and everyone else for helping us through this.

Meanwhile, we are trying to find Ethan a good prekindergarten class in the area, so if you have any recommendations, please send them our way! Thanks!

Update on Jacob's Health

Sorry for the long gap in between posts on this blog. At the beginning of September, I went back to school to start earning a Ph.D., and lots of other things have been going on in our lives including selling our house in Redlands and preparing to move (which we're doing tomorrow). With everything that's been happening, Kylene and I have simply not had any time to update our family blog.

During the past couple months, we've continued to have follow-up visits with doctors regarding Jacob's chronic granulomatous disease, which we have mentioned previously on this blog. The doctors recommended that we consider having Jacob undergo a bone marrow transplant, which is presently the only way to cure CGD. After our initial visit with the bone marrow transplant doctors, it sounded to us like the treatment would potentially be worse than the disease; there are a lot of potentially major side effects to undergoing chemotherapy and bone marrow transplantation. Later we met with the CGD specialist doctor again, and he strongly advised us to reconsider. He explained that out of the 20+ CGD patients he's worked with, only one child survived to adulthood, and the doctor lost contact with the individual after he reached the age of 26. Normally CGD patients do not live beyond their teenage years if they try to rely solely on prophylactic medications like the ones that Jacob has been taking since his diagnosis, because prophylaxis simply cannot substitute for a healthy immune system and there are certain infections that are very dangerous for a CGD patient that cannot be prevented.

According to the CGD specialist doctor, Jacob's best chance for a longer and more normal life is to receive a bone marrow transplant. He said that the chance of a transplant successfully curing a CGD patient is fairly high. Since Ethan, Kylene, and I had been tested previously and found to not be close enough matches to be donors for Jacob, a nurse searched the bone marrow registry and found two donors who were a very good match, 14 out of 16 genetic markers (16/16 is pretty much only possible with an identical twin). A date was set for Jacob's admission to the hospital to undergo 10 days of chemotherapy followed by a bone marrow transplant. Jacob has been undergoing a number of tests over the past couple weeks to ensure that his body is ready to begin the process.

Yesterday we received some discouraging news about one of Jacob's recent tests. The chest CT scan that he had recently showed an enlarged lymph node in his lung. They will need to do a biopsy on his lung to find out if he has a fungal infection. (This gives us a lot of cause for concern because one of the bone marrow transplant doctors has told us previously that fungal infections are common in children who live in Loma Linda, which is right next to Redlands, and she indicated that [non-CGD] children who are preparing for transplants typically don't know about these infections until they're discovered in the CT scan.) In the mean time, they're postponing his chemotherapy and bone marrow transplant. Instead, he will soon have to be admitted to the hospital for the lung biopsy and other tests. We were told that he will be in the hospital for at least 3-4 days just for the tests (presumably longer if he needs treatment), but we don't know exactly what date he will be admitted. We are scheduled to meet with the doctors to find out more on Monday, February 28th.

If it turns out that he has a fungal infection in his lung, it would be at least several months before he could be a candidate for a bone marrow transplant again. However, fungal infections are very difficult to eradicate completely in CGD patients, and it's possible that he would never fully recover. That would mean that he would never be eligible for a transplant, and he probably would not live many years after that. Jacob is such a remarkable, pure, and innocent child, and we cannot bear the thought of losing him. We deeply hope that he doesn't have an incurable infection.

Please keep Jacob in your prayers. We try to take comfort in the words of James found in the New Testament: "And the prayer of faith shall save the sick, and the Lord shall raise him up... pray one for another, that ye may be healed. The effectual fervent prayer of a righteous man [or woman] availeth much" (James 5:15-16).

Happy 2nd Birthday, Jacob!

I can't believe our little Jacob is already two! He's turning into such a big boy. Here are a few shots from his two-year-old photo shoot, birthday party, and a bonus picture from Father's Day. We love Jacob so much!

Art Fair, Park, Play, & Oak Glen

I have a few things to catch up from the past couple of weeks. First of all, I want to show off Ethan's artwork from the art fair at his preschool. Along the top row of the collage from left to right: Ethan's gold star and a picture of him holding his puppet that he made of Bruce from Finding Nemo, Ethan posing in front of his easel painting with the green handprint, Ethan pointing to his square on his class quilt (Grandma Judy would be proud!). Along the bottom row: Ethan showing us his Bruce puppet, a picture of Ethan working on his easel painting, and the last picture is of Josh, Jacob and Ethan creating a piece of art.

 

This next collage includes some pictures taken from the park. Ethan and Josh were there, too. Josh was the cameraman and Ethan was always on the go and too hard to catch on camera.

 

Here are some shots of the boys playing out on the porch together.

Here is a cute shot I took with my phone camera of Jacob at our favorite park. We spend a lot of time at parks, since Jacob cannot safely play at the playground right in front of our house due to the wood chip ground. The mold that grows in wood chips is very dangerous for CGD patients. Unfortunately, Redlands' parks and schools all use them. Loma Linda, however, uses the rubber ground, which is safer for Jacob.

This last batch of pictures and the video below are from Ethan's preschool field trip to Riley's Farm in Oak Glen yesterday.  I signed up to be a driver and got a feel for what it must be like to be a bus driver.  I had six preschoolers (with their carseats) squished into the Pilot and another mom as my navigator.  Ethan was certainly by far the loudest voice in the car, but the noise of the other kids just added to the chaos.  Somehow we managed the trip safely and the kids had a lot of fun.  Top row from left to right: kids sanitizing their hands to get ready for making apple cider, the kids sitting in front of a log cabin after exploring the inside, the kids getting loaded for their hayride.  They learned to shout "wagons ho" to get the horses to start walking.  Along the bottom: a close up of Ethan on the wagon, Ethan with a few of his classmates, and lastly, Ethan getting ready to throw his apple into the apple cider press.

Here is Ethan tossing his apple in.  Each child got about 4 or 5 turns. 

Happy Easter 2010

 

I know it's a miracle that I'm actually updating our blog. I almost wrote it off as a lost cause, but found a little motivation to add something to it tonight. My motivation? My boys are just so stinkin' adorable! Hey, whatever works! Anyway, here is a collage of decorating eggs and doing an egg hunt at my parents' house last weekend. The weather was perfect and the boys had a blast!

Yes, I do love dressing my boys in matching outfits, and what's even better is that they love wearing matching outfits!  I figure I may as well take advantage of their compliance while they think it is cool.  These are their Easter shirts.  They just LOVE saying cheese for the camera!  So cute!

My Handsome Boys

The other day I was looking at Ethan's preschool picture and I had one of those moments when I realized how fast he is growing up. The thought tugged on my tender mother heart, and I realized how quickly these moments are going to pass. I vowed to appreciate each day and each experience with my sons to the fullest. I feel so blessed to have these two precious boys in my life.

Merry Christmas

 

This year Santa left the boys a train table and a drawing easel, among other things. The kids were so excited to see what they got and Santa was really feeling good about the decisions on which toys he gave them. Now, Santa's starting to wonder if these large toys were a bit too large for our small house. Where to store them when not in use? Oh well, they're only kids once, might as well enjoy, right? I mean, just look at those cute faces!

Christmas Eve Dinner at In-N-Out

These pictures were just so cute I couldn't pass up this chance to share them.

Ethan's Preschool Christmas Show

Ethan was so adorable! He knew his song really well and was close to a microphone so his voice stood out from the other children. There is a part of the song that says "Jesus is coming, open your heart," and if you listen carefully to the video around 40 seconds in, you can hear him say "Jesus is coming, open your silly heart." He's such a little jokester! (Lyrics below... or at least what we think they were singing.)

Jesus Is Coming

[Unintelligible]

Time to get ready

I'll do my part

Jesus is coming

Open your heart

Sing Hosanna

Jesus is coming

Time to get ready

Open your heart

[Unintelligible]

Someone is coming

Wait and see

[Unintelligible]

I'll do my part

Jesus is coming

Open your [silly] heart

Sing Hosanna

Jesus is coming

Time to get ready

Open your heart

Josh's Birthday and Stocking Stuffers

We had an enjoyable birthday dinner at Josh's parents house to celebrate his special day. It's hard to believe I've known Josh for almost 12 years now. Time has flown by so fast. After Josh's birthday dinner, we opened our stocking stuffers with his family. As you can see from the collage, it's all about the kids at Christmas. Josh teased that they were breaking into their stocking stuffers before he had even finished reading his birthday card. Sorry, honey! It was a really fun night for all.

Christmas Photo Shoot at the Redlands Temple

As always, you can double click the image to see the smaller pictures in more detail.

Thanksgiving

Our boys love their cousins.

At Grandma & Grandpa Long's House

Best Friends

These two little guys are so cute! I love catching these moments when they are truly enjoying playing together.