Wednesday, March 30, 2011

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.

Saturday, March 26, 2011

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.

Sunday, March 20, 2011

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.

Friday, March 11, 2011

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.

Saturday, March 05, 2011

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.

Wednesday, March 02, 2011

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.