Day +21

Additional information we found out since our last post: Since Jacob had reduced intensity chemotherapy, the doctors will wait until 30 days post transplant to test to see which marrow is growing. That puts us on May 15th. Also, the doctors increased Jacob's steroid dose to get his rash under control. The steroids caused Jacob's numbers to skyrocket yesterday and today. His ANC is 950 and his white blood cell count is 1.28. His platelets are 120 and his Hemoglobin is 11.5. These numbers would be cause to rejoice, but I think they are artificially high because of the steroids. But still, I'm happy to see them go up each day! :)

Day +18 ANC

Jacob now has enough white blood cells to start calculating his ANC. A normal ANC is 2000-3000; however, since Jacob received chemotherapy and radiation, his ANC will most likely not reach normal until maybe a year from now. The goal is for him to get over 500. Right now he is at 210, same as yesterday. The ANC is a calculation of Jacob's white blood cell count (WBC), Polys, and Bands, (all components of the immune system) so it shows an overall reflection of how Jacob's immune system is doing. So each day when I get here in the morning, I like to find out what Jacob's ANC is to get an idea of how his immune system is progressing. Once Jacob goes over 500, hopefully by next week, he will be tested to see which bone marrow is growing- the donor's or his old marrow. We hope that it will be the donor's.

Jacob's WBC is .58 and the normal count is 3.5-10.9. White blood cells protect the body from bacteria, viruses, and fungi and help to strengthen the immune system. They go after the germs and eat them up!

Jacob's hair has been thinning since last Friday. I asked if we could shave his head to keep him from getting hair in his eyes, nose, and mouth, and all over his clothes and bed, but they said it would be too dangerous. Because Jacob's immune system is so weak, even the smallest little nick could cause a serious infection, so it is not worth the risk.

Jacob still has no appetite and has developed really bad incontinence. His bottom is so sore that last night the nurse had to give him morphine just to wipe.

Other updates:

Jacob's mouth looks good- no sores.

The past couple of days he's been rashy all over the upper half of his body. Could be graft versus host, could just be the engraftment taking place, the doctors are thinking the latter. Yesterday we treated him with Benadryl. I don't know what they will decide today.

The sinus culture from last week came back negative for the viruses they tested. Not to say that it isn't a virus, but it's not the serious ones that they test for here. Thankfully, adenovirus had not moved to his respiratory system.

Jacob is passed the risk period for VOD, and so no longer has to take his daily oral med, so the doctors decided to wait on the NG tube.

So, in order to go home, Jacob has to switch from his IV meds to all oral, start eating again, and have an ANC over 500. This is all still going to take some time, but I'm glad that he is progressing in the right direction.

Day +14

It's hard to believe it has been two weeks since Jacob's transplant. The past few days have been difficult. He has almost completely stopped eating and has to receive 24 hour nourishment through his iv. Again, the doctors aren't worried and say that this is completely normal at his stage of transplant. He is receiving the nourishment he needs to continue to heal.

Jacob has had a runny nose for the past week and we hope that it isn't anything serious. They did a sinus culture on him Wednesday and so we are waiting to hear back on the results of that. His nurse said sometimes children with low blood counts get runny noses, so hopefully it's just that. On the other hand, it could be the adinovirus that was discovered in his blood after his first round of chemo. He is still receiving a weekly treatment for the virus, but it is possible that it has moved to his respiratory system.

Other discouraging news is that Jacob has gotten worse with taking his oral medications, which are important for protecting his liver and kidneys from being damaged from all his other medications. He either throws it up, spits it out, and just holds it in his mouth until he cries and then it leaks out. Today the doctors are discussing inserting a tube through his nose that would go down into his stomach. This way he would get his oral medications without having to taste them. It may sound like a simple and practical solution, but the last time nurses tried inserting a nose tube (back in '09), it scared him to death, wouldn't go in, made his nose bleed, and ultimately failed to insert.

I can tell that Jacob has been feeling tired and a little down since Wednesday. I think his little body is fighting hard to begin grafting in the new marrow and it wipes him out. It has been a hard week and although I am at home with Ethan today and tomorrow, my heart and mind are still at the hospital with Jacob. I know Josh will be exhausted after we trade off again Saturday night.

Thank you for your continued prayers and for all those who have donated blood and platelets and for those who have wanted to and for everyone who has served our family in other ways. We feel of your love and concern and know we are extremely blessed.

Platelets and Blood This Week

The latest word from the doctors is that Jacob will probably need blood and platelets this week.  They won't transfuse today, but his counts are getting low so they may give him a transfusion as soon as tomorrow.  Looking at the platelet calendar, it appears that Jacob should have a sufficient supply of blood and platelets throughout this week, for which we are very grateful.

So far, however, the May platelet donation calendar is pretty bare, and May starts on Sunday.  As of right now, nobody is signed up for the first two weeks of May, and Jacob might need platelets or blood during that time.  Please go to our calendar and sign up to donate platelets.  Since many donors are only available to donate on weekends, please try to donate mid-week if possible.  This will help spread out platelet donations, which is important; remember that platelets only have a shelf life of 4-5 days.

Thanks as always to all those who have been supportive of our family through prayers, platelet and blood donations, and helping or offering to help in other ways.

Hospital Life

Jacob is chowing down on a bag of pretzels as I write this. He is doing great for a post-BMT patient. His immune system is very weak, practically non existent, so he has to stay in isolation throughout recovery, which is normal. His blood count numbers continue to drop, which is also normal. They will continue to drop for the next couple of weeks, and then should slowly start to come up. When they get to a certain level, Jacob is safe to go home. His immune system won't be fully recovered for 6 months to a year, so we will have to continue to be very careful about germs. His nurse on Sunday said you'd never know he just had a bone marrow transplant as he was energetic and playful throughout the day. He still has his hair for now and he hasn't developed any mouth sores. He also hasn't been nauseous since transplant day and the following day, which has been good because he can eat, which most bmt patients won't do. Jacob is receiving 12 hours of nutrition through his iv to fill in any gaps in his diet.

The hardest part right now is just waiting, waiting, and more waiting. Being in a hospital room for 14 hours/day and wearing all the isolation gear gets tedious, but I'm glad Jacob doesn't seem to mind being here. We watch a lot of cartoons because I run out of play ideas. I am finishing my fourth day in a row at the hospital and will be trading off with Josh tonight. I am looking forward to spending time with Ethan, who has been so amazing through all of this chaos in his life. It will be so wonderful to have our family back together again at the end of all of this. I miss that the most.

We have been greatly blessed in so many ways throughout this process. Thanks to everyone who is donating blood and platelets for Jacob, and for those of you coordinating efforts. You are an amazing blessing to him and our family and we are so grateful. It has been a humbling experience for us to be in this type of situation and we have been so touched by your charity. We can't thank you enough.

Platelet Donation Calendar

First here's an update to Kylene's blog post from earlier today.  Although Jacob's was in goods spirits throughout the day, he began the day with not much of an appetite and was unable to keep any food down until the evening.  Jacob was willing to entertain the idea of eating and even asked for specific things, but when it came to actually eating he had a hard time taking any bites.  He only ate a bite or two at breakfast and one bite at lunch, and both times he threw up shortly after eating.  According to the dietician who came to check on him earlier, this is pretty normal after a bone marrow transplant.  If Jacob doesn't start eating and keeping food down consistently, they will put him on intravenous nutrition until he improves.  I'm happy to report that Jacob did great with eating his dinner tonight (his appetite seems to have returned) and he didn't throw up even after his "yucky" oral medicine and mouth cleaning, so hopefully the eating and vomiting problems have passed.

I have created a platelet donation calendar on Google Docs.  Anyone can edit it and add themselves to the calendar.  To avoid confusion, the calendar is for platelets only, not whole blood donations.  Platelets have a very short shelf life (4-5 days) so it is important that platelet donations are spread out.  You can donate platelets regardless of your blood type.  Please make sure you qualify to donate, and schedule with the donation center at (323) 361-2441 before putting your name on the calendar.

If you have type O- or O+ blood you can make a whole blood donation specifically for Jacob.  Whole blood has a shelf life of 3-5 weeks, and an individual can donate whole blood again 8 weeks after the last whole blood donation.  Rather than having a second calendar, please just let Josh and Kylene know when you're donating whole blood and we can give you further information on how to ensure that the donation will be reserved specifically for Jacob.

Thanks to all of you who have been keeping Jacob in your prayers and have been willing to donate blood and platelets.

A New Beginning

Yesterday was a new birthday for Jacob. His new bone marrow dripped in through his i.v. over the course of 8 hours. All of his vitals look good and he is happy today. Now it is a waiting game to see when the graft begins to take place and his body starts producing marrow on its own. We are praying he does not get graft versus host disease or develop any other complications. If things go smoothly, he should be able to come home in about 2 months, shortly after he turns 3.

Putting Jacob through two sessions of radiation treatment was tough yesterday. I couldn't help but second guess the decision we had made to go forward with this whole thing, but of course by this point we just had to keep going. The radiation made him nauseous and exhausted, so it was hard seeing him like that. By around 8:30 last night, he woke up hungry and happy, so he seems to have bounced back quickly.

We have been overwhelmed with the outpouring of volunteers willing to donate blood and platelets to Jacob! We never anticipated such a huge response. We are truly truly blessed and are so grateful for all willing volunteers and those who are working on coordinating efforts. Because the response has been so huge, Josh and I are working on a link to a googledocs calendar that we will link to from our blog that you can sign up on and see when others are donating. This way donors can be spaced out throughout Jacob's hospital stay and those precious donations don't go to waste. We are hoping to have it up by the end of the day. We love you and are deeply touched by how much people care and serve in time of need.

Day -3 Donate Platelets!!! [Updated x2]

As I write this, Jacob is receiving a blood transfusion. The first of possibly many to come during the transplant process. I'm so grateful for people's goodness and generosity, for without blood donations, many innocent patients could not live. This is the second time in Jacob's life that he has needed blood, and it is probably not his last. As I learn more about Jacob's procedure, I now understand that not only are blood donations vitally needed for these little ones to make it through, but platelets as well. I was just informed that the hospital's platelet supply is extremely low. My nurse even commented that it is "scary." I know many of you are praying for Jacob and have wondered what else you can do to offer your help and love... Jacob, as well as other children going through chemo on our floor need platelets to live. Please call Children's Hospital LA at (323) 361-2441 for questions or appointments concerning platelet and/or blood donations. This is a very real way to put your good intentions to good deeds. You can donate directly to a bank for Jacob if you specify.

The Fludarabine chemotherapy that Jacob has received yesterday, today, and will receive tomorrow has thankfully not caused any outwardly discomfort for Jacob. He is still eating well and has not had any fevers or chills with it. I am so grateful for this as I was anticipating nausea and vomiting with Fludarabine. I can't believe we are three days away from transplant. This morning he started on an immunosuppressant drug that will prevent his body from attacking his new marrow.

I was informed yesterday that he will receive both radiation treatments on the same day, five hours apart. Because of doubling his dose (see our previous post), he may experience hair loss and mouth sores afterall. He is receiving 400 centigray in one day and the maximum amount of radiation allowed for a person is 450, so he will nearly be at the max.

UPDATE, April 13th: Josh called the CHLA blood donation number to get more specific information about who can donate to Jacob based on their blood types, and how often an individual can donate.

If you have either O- or O+ blood, you can make whole blood donations that Jacob could use. Please note that whole blood has a limited shelf life (3-5 weeks). An individual may make a whole blood donation once every 8 weeks.

If you have A-, A+, AB-, or AB+ blood any blood type, you can make platelet donations that Jacob could use. (We've gotten several different answers, but on April 15th we finally got clarification that blood type does not matter for platelet donations at Children's Hospital.) Please note that platelets have a very short shelf life (up to 5 days). An individual may donate platelets as often as every 3 days, but CHLA recommends waiting longer in between platelet donations (the American Red Cross suggests once every 7 days).

For further details on whether you would be a good candidate to donate blood or platelets, please call CHLA's blood donation center at (323) 361-2441.

Day -6: Lingering Lymphocytes

Kylene is at home with Ethan today, and she has been getting started moving things out of storage and into our new rental home. Meanwhile, I'm on hospital duty for the weekend.

The other day a test and retest seemed to indicate that Jacob's heart might be enlarged. A doctor doing rounds this morning told me that the results of a more accurate test came back and his heart is apparently not enlarged after all. She commented that she noticed the hole in the top hinges of his heart, which had been discovered previously. I believe we mentioned before on the blog that while it sounds scary, a hole in the top hinges is usually not a problem, but Jacob will probably have annual visits with a cardiologist just to be sure his heart is working properly.

A little later this morning, one of the BMT doctors came to speak with me. He said that the quantitative test results on the adenovirus levels came back, and thankfully the level was so low that it didn't even register (the test only gives a result if the count is greater than 100). This was the good news. The bad news was that Jacob still has lymphocytes (a type of white blood cell, one of the body's defensive cells) in his blood, meaning that the Campath unfortunately did not eradicate them entirely. Prior to receiving a bone marrow transplant, all lymphocytes must be destroyed to ensure that the body does not attack the new cells. The doctor explained that the only way to effectively resolve this problem is to give Jacob an extra 200 cGy (200 centigray, also written as 2 Gy or gray) of radiation, ideally 5 hours apart from the 200 cGy they were already planning to give him on the transplant day, to kill the remaining lymphocytes. If the radiation oncologist prefers, the radiation treatments could be done a day apart, but the BMT doctor says two treatments 5 hours apart would be ideal. Four gray is a lot of radiation compared to X-rays or any natural exposure to radiation, but it's still pretty low compared to many types of radiation therapy.

As always, thank you for keeping Jacob in your prayers. Tomorrow (Sunday) we will be fasting for Jacob in addition to keeping him in our prayers throughout the day. You are welcome to join us in fasting for him, if you wish to. For more information on why and how we fast, you can go here and click on Additional Information, then read the sections titled "Purposes of Fasting" and "Fast Sunday," respectively.

More Information on Adenovirus

Yesterday Kylene blogged that adenovirus was found in Jacob's blood, and that cidofovir (sigh-DOFF-o-veer) and probenecid are being used to treat it.  I did a little research to see what I could find out about the potential effects of adenovirus, particularly in immunocompromised patients, and the effectiveness of cidofovir against it.

Adenovirus is very common in young children; healthy children with active T cells typically just get cold- or flu-like symptoms, and after the body suppresses the virus, the symptoms subside indefinitely.  It's very likely that Jacob had adenovirus in his body prior to hospitalization, but his T cells had been suppressing it, making it undetectable.  The Campath chemotherapy on Tuesday wiped out Jacob's T cells, which caused the virus to become active, hence the detection on Thursday.

Potential symptoms of acute adenovirus infection include fever, runny nose, cough, sore throat, rattling sounds when breathing, discoloration of urine and presence of blood in urine, and other symptoms similar to those of pink eye, flu, and pneumonia.  As of when I talked to Kylene this morning, she has not observed these symptoms in Jacob.  In extreme cases where immunocompromised patients are not treated or when treatment of adenoviral infection is ineffective, it can even result in death.

Based on what I've read, Jacob's cidofovir treatment will likely suppress adenovirus and make it undetectable again until his new immune system can suppress it sometime after transplantation.  However, as Kylene indicated in her previous post, cidofovir is not always effective against adenovirus.  In my research I discovered that in a 2002 retrospective study, cidofovir was effective in about 75% of patients with adenovirus infections (31 out of 41 patients) who did not die of unrelated complications, although it should be noted that the severity of the infection and the dosage and length of cidofovir treatment varied.  Of the 16 patients in the study with asymptomatic infections, 4 died of unrelated causes, and of the remaining 12 patients, 10 of them (83%) were treated successfully.  One of the two who was not treated successfully "relapsed with adenovirus after discontinuation of cidofovir. The patient was not retreated and died of disseminated adenovirus disease."  Forty percent of the 45 patients in the study developed toxicity, usually in the kidneys, so that's something we'll need to watch for.  Note that the sample in this study is small, but the overall success rate of suppressing adenovirus is promising.

Day -8

Today adenovirus was discovered in Jacob's blood. This is scary because the first round of chemo wiped out his T cells, which are needed to fight the virus. His doctor ordered cidofovir and probenecid to hopefully wipe out the virus. He said patients normally respond well to this treatment, but it is not 100% successful. We are going forward with transplant because he already had chemo and so now it is too late to go back. We are staying hopeful that the medicine will work.

Also, an EKG was done today which came back indicating that the right side of his heart was enlarged. This triggered an order for an echo cardiogram and a repeat of the EKG, hoping that the first reading was a mistake. We are waiting to hear back on that.

Jacob had an eye exam today as well. For once, his test results came back normal!

I have a laptop set up in Jacob's room now, so we can stay in better contact with everyone. We can also Skype. For family members and close friends, if you are interested in visiting Jacob, this would be the best week to do it since his chemo resumes on Monday. He looks like he is feeling well and loves to play. Just remember, except for grandparents, you can only play with him through the plastic curtain.

First Day of Chemotherapy

Jacob was admitted to Children's Hospital on Monday evening. We had to wait all day for his room to become available, so Kylene and I had plenty of time to get packed, drive out to L.A., check into the Ronald McDonald House, and have dinner with Jacob at the CHLA cafeteria prior to taking him to the clean room where he'll be living for the next two months or more. Kylene and I have been busy putting up laminated pictures of family, Jesus, temples, Disney and Pixar characters, and other things he likes, and we've also been carefully cleaning his toys, books, and movies so they'll be safe for him to have in his room.

Jacob had his Campath chemotherapy treatment today. It was administered over 6 hours to reduce side effects, but he did vomit a few times and had a fever for a little while. His temperature was back to normal the last time his nurse checked it. Jacob will be off chemotherapy for five days and then will start on a different chemo drug. Jacob is taking a long and much-needed nap after a very late night last night and an early morning today. Kylene also got to go back to our room at the Ronald McDonald House for a nap while I have been hanging out here at the hospital in case Jacob wakes up and needs one of us.

Last night we got Skype working on my iPhone so Jacob could see and talk to Ethan and my parents. Today Ethan is with Kylene's parents and got to go to the zoo with them. Depending on if and when Jacob wakes up from his nap (he might be out for the night!), we might see if we can do Skype again tonight while Ethan stays at Kylene's parents' house.

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).