Dropping ANC and white blood cells

Sorry for the delay in posting an update. It’s easy to share joyful news, but hard to share our setbacks. Jacob’s GVH rash is pretty much gone, which is our good news. Now onto the bad news. Jacob is learning to take his oral medications. Some times he gets it down and keeps it down, other times we are not so lucky. Jacob is not interested in eating yet and he always falls far below our goal for liquid and caloric intake. Two nights ago Jacob’s cough started getting worse and his anc and white blood cell count have been dropping steadily the past five days. Six days ago his anc was 2580 and today it is 580. These symptoms are concerning to the doctor and ourselves because he seems to be fighting something. He hasn’t had any fever and his lungs sound clear, which could lead us back to the silent and sneaky fungal infection that the doctor suspected a couple of weeks ago. Jacob is getting a repeat CT scan today to see if the lung inflammation has gotten worse. If there are any large areas of inflammation, Jacob may have to get another lung biopsy to see if the doctors can identify the problem and treat it more specifically. He also had another sinus rinse this morning to see if they can identify a problem there.

Day +33 Functioning Neutrophils!

We got some great news yesterday. The cell that was functioning at 0% in Jacob’s old immune system, called a neutrophil, is now functioning at 96%. That means the donor’s cells are working in Jacob’s body! Other news we got was that 78% of Jacob’s cells are donor cells and 22% are his old. The donor’s percentage should continue to grow as it takes over Jacob’s weaker cells. In 6 months or so it could reach 100%. That is what we are hoping for. The doctor sent off a test today to find out what types of cells are left of Jacob’s. That will take some time to come back.

Jacob was supposed to start taking an appetite increaser medication yesterday, but was unable to swallow any. Oral medications are going to be a huge challenge. How do you get a three-year-old to willingly take yucky medication? We are going to try a sticker chart today. We may never get out of here if he can’t learn to swallow his medications. We are not completely opposed to trying an NG tube, so we will see. An appetite increaser would be great because he would then be allowed to come off of iv nutrition; one step closer to coming home. But for now, he might not be getting enough calories and the doctor might order him an actual increase in iv nutrition a couple times a week.

On Monday Jacob had a chest CT scan to investigate the cause of his persistent cough. Originally, Jacob was supposed to be sedated, but he did so well, they let him stay awake. He squeezed his eyes shut tight and I was able to stay right next to him and touch his legs and talk to him the whole time. I couldn't help but get choked up watching his sweet little face. I’m so proud of my little man for being so brave for something that was scary. Just as the doctor suspected, Jacob had swollen lymphnodes throughout his lungs. Jacob had a lung biopsy before starting his bone marrow transplant, and the biopsy came back normal; however, fungal infections are hard to detect and frequently sneak through undetected. The doctor figures that the swollen lymphnodes found before the bmt were in fact a fungal infection and now it has spread. We are hoping that his new functioning cells, along with the antifungal medication that he is on, will take care of the problem, but it is definitely a concern. The new cells could go overboard attacking the fungus and end up causing pneumonia. We are keeping a close eye on any new symptoms and Jacob will get a followup CT scan down the road to make sure the infection is not getting any worse.

Another Difficult Day

Jacob has just had two rough days in a row. As Kylene mentioned, Jacob threw up 6 times yesterday while I was at the hospital with him. This morning things seemed better at first: very little coughing and no vomiting, and he hadn't vomited at all while he was sleeping last night. Later today, however, the vomiting returned (4 times). He had a fever tonight before I left: 100.2° F (37.9° C), which is a mere 0.1° C (0.2° F) below what they consider to be a fever spike. When I spoke with the doctor on Thursday afternoon she said that if Jacob started spiking a fever it would be cause for concern and they would have to reevaluate his situation, so hopefully the main BMT doctors will take the fever into consideration when they discuss Jacob's situation in the morning. I just called the nurse, and she said that the fever has gone down and that the resident instructed her to only do further tests if his temperature reaches exactly 38.0° C or higher, as per their usual procedure.

Since the CT scan couldn't be done until Monday, Jacob had to get X-rays this morning to see if any problems could be identified before Monday. We don't know whether the doctor had a chance to analyze the X-rays yet, but I'll discuss it with the doctor in the morning.

Since Jacob's hemoglobin and hematocrit were low this morning, he received a blood transfusion.  Thanks again to all those who have donated blood or platelets, or have tried to donate, or have wished they could but live too far away. If you missed Kylene's mention of it a couple blog posts ago, she said that Jacob does not need platelets at this time, but he may still need blood. Little did we know that he would need blood again so soon—today!  If you have O+ blood, you can donate whole blood at Children's Hospital Los Angeles specifically for Jacob.  After scheduling a time to donate, please sign up on our calendar. Here's the link.

We have a lot of questions right now; I literally have over a dozen questions to ask the doctor in the morning. We don't even know for sure why Jacob has started coughing and vomiting. A couple of theories have been floated, but no definitive conclusions have been reached yet. Jacob is on an additional medication today and restarted another medication to hopefully help reduce vomiting, but both medications are more about controlling the symptoms rather than curing an underlying problem. Kylene and I are very concerned about Jacob's health right now, and we hope we get some answers soon (and that the problems are curable).

This is a very difficult time for all of us, so we humbly ask that you please keep Jacob and our family in your prayers. We greatly appreciate your love and support.

Four Weeks Post Transplant

I can't believe how quickly Jacob's condition can change from one day to the next, in this case for the worse. On Wednesday evening, Jacob started coughing and then threw up. It was strange because he hasn't thrown up for a long time, but an isolated incident didn't seem to be much of a concern, although I did notice his appetite was nearly gone that day. He did mention a couple of times that his tummy hurt, but I thought it might've been from not eating for so long and then starting up again. Yesterday, the coughing continued and he threw up six times by the time Josh had to leave last night. His doctor is concerned that it might be a fungal infection, since those are the hardest to detect and clear up. The doctor ordered a sedation and a CT scan to check for a fungal infection which will probably take place Monday. The doctor thinks his enlarged lymphnodes that he had biopsied in February may in fact have been an infection, but slipped through undetected. Please continue to pray for Jacob. My heart is breaking. It seems like just when things start looking hopeful for Jacob we have a major set back. All Jacob's numbers are down today. ANC 1310, platelets 159, white blood cells 1.92, hemoglobin 8.6. Sorry to share depressing news, but we need to rally our faith and prayers in Jacob's behalf. I've seen the power of prayer work in the past.

Day +27

Here are pictures from Ethan's visit last week:

Jacob's ANC really jumped high this week, all the way to 1800. Part of that was the steroid treatment he had to receive for his rash. They are now lowering his steroid and his ANC is 1770, which we're still happy with. His white blood cells are growing and his platelets are almost at 200! For our donors signed up for the rest of May, Jacob most likely won't need platelets, but other children at the hospital will definitely benefit if you still want to come in. If anything, Jacob may need whole blood from time to time. Other exciting progress for Jacob this week is that he is allowed to eat milk products again since his ANC is so high. Jacob was excited with his new food choices at first and was happy to eat yogurt, cheese pizza, Cheetos, quesadillas, string cheese, etc, but these past couple of days, the excitement has worn off and he's not eating so well again. However, the doctors still have been tapering Jacob's TPN, first from 24 hrs to 18 hrs, then to 12 hrs just at night, and now they are going to take off the lipid portion of the TPN. Hopefully this increases his appetite and desire to eat.

Yesterday blood was taken to test which bone marrow is growing. Last week they told us they would wait until the 16th to run that test, but for some reason decided to do it this week. The test is high tech and will take several days to get results back.

The adenovirus which Jacob has been receiving a weekly treatment for, is now coming back negative! This is good news and Jacob will not have to get the treatment this week. The medicine for adenovirus is very toxic to the kidneys and the oral medication that he's supposed to take along with it to protect his kidneys is very bitter and makes him gag and throw up. So we were very happy to hear that he is off the treatment for now unless they find the virus in his blood again.

For the first time ever in the hospital, Jacob actually enjoyed his bath yesterday. He sat down and played and splashed water all around. That was short lived though because Josh said today he didn't like his bath again. Oh well, baby steps.

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.