Day +22

I don't have a lot to report, which is a good thing in this case. Jacob's ANC was up to 408 as of this morning. We could possibly see 500 tomorrow! After 3 days of being at 500, we can start to taper back his iv nutrition to try to get his appetite back up. If he still does not want to eat, he can get an ng tube, which I am all for. Having one would take all the pressure off of him to swallow medicines, plus I'd have the peace of mind knowing he is getting enough calories. He had one last year, and although he didn't like it, it was a really good stepping stone for him to start eating again. Jacob has started making platelets on his own, which is great! Also, he hasn't had any signs of gvhd. Once we have Jacob switched over to all oral meds and nutrition, and his ANC is high enough, we will be able to leave. He is weaning off morphine, which will take the rest of the week, but I am staying hopeful that we could be out of here some time next week.

Day +18

Jacob had counts today for the first time since his transplant. This means that the cells are beginning to engraft! Hooray! Now our next steps of many to come are to keep an eye out for any graft versus host disease (please keep praying that he won't get any), to help ease his vomiting and diarrhea, to help him get his appetite back by weaning off the iv nutrition, and to get him switched over to oral medications. All of these things will take time as we know from our prior experience, but it would be nice to resolve them on an out patient basis. We will see. We also have to remain vigilant about avoiding and preventing germs.  Jacob's immune system won't recover for another 6-12 months.  His ANC (absolute neutrophil count) must be over 500 to go home (back to our apartment). Up until today it was zero and now it is 140.

Here is Jacob and Grandma Taylor

Jacob in his new Mickey jammies

Day +15

Jacob continues to do well! He has to get platelet transfusions 2-3 times a week. Also his eating has dwindled substantially, but he is receiving 22 hour infusions of iv nutrition and has even managed to put on a little weight. We should see engraftment occur this week. Jacob's hair began falling out so we shaved it off to help him to be more comfortable. He looks adorable. My mom is here helping and is such a blessing. Please continue to pray that Jacob will engraft 100% donor cells and that he won't get any graft versus host. We appreciate your prayers so much!

Here are some pictures from last week:

music therapy

playing on the Mobigo

riding a bike

Day +9

Today we got a cute belated happy transplant day poster with some of Jacob's favorite characters from the bmt nurses. All the transplant patients get one. Jacob was really excited to get his. It was late because the artist was on vacation during Jacob's transplant, which actually worked out great because Jacob is feeling well enough to enjoy it now.

We also had music therapy today, which Jacob thoroughly enjoyed for a few minutes, but then went into a total meltdown from exhaustion. He was fast asleep not even 5 minutes after music therapy was over.

Day +8

I'm sad that Josh, Seth, and Cece are leaving tomorrow. We've had a lot of fun having Seth and Cece visit this weekend, and my sweet husband has spent every single night at the hospital for the past two weeks so that I could get a good night's sleep at our apartment. This will be my first time on my own since Jacob was admitted at Seattle Children's. Thankfully my mom will be here later in the week, so I'll only have to juggle it on my own for a few days.

Jacob continues to do well. I noticed several hairs stuck to his clothes today, and from previous experience, I know that means his hair is starting to fall out. Although that specific side effect is only cosmetic, it is a reminder of the trauma his body went through with his conditioning regimen, and for that reason, it makes my heart ache. Jacob continues to eat some each day and he seems happy. They took him off his morphine drip because he is not in pain. Jacob still has a lot of work to do with his legs. He wears out so quickly. The p.t.'s will continue to work with him. Jacob has been sleeping more than he used to. His body has been through so much and is working hard to rebuild.

Here's a picture of Jacob with his aunt and uncle.

Day +7

Jacob's team is pleased with how smoothly everything is going. Jacob has been eating some and so the team will discuss cutting back a little on his iv nutrition tomorrow. He has done great not getting any mouth sores, so that along with not being nauseous, has helped him to eat and take his oral meds. We should see the new marrow engraft in about a week. Please pray that he will keep 100% of those beautiful donor cells this time and be cured of this dreadful disease for good. Also please pray that he won't get any graft versus host disease. If he doesn't get it and he's doing well, the team said he could be discharged as early as day +25! It's hard to imagine getting out so early after being in patient for nearly 4 months with his first transplant last year. Let's hope and pray that things continue to go smoothly. We are so grateful that he is feeling well and that everything is on track.

This has been a fun weekend. We are enjoying a visit from Josh's brother and his wife. Jacob completely lit up when they arrived in his room this morning. We are grateful for such a supportive family.

Here's a picture of Jacob being silly yesterday with his beanie babies. He said the snake was his coat and the chick in its egg was his hat.

Room with a View

This is Josh posting on the blog this time.

Jacob moved to a bigger hospital room today. The new room is brighter, significantly more spacious, and has a much nicer view. Here are some pictures and panoramic shots of the old and new rooms.

Just for fun, I've also included a panoramic of the room at Children's Hospital Los Angeles where Jacob stayed for all except the last three days of his hospitalization last year. (His last three days at CHLA were in a brand new room in the new wing. That room was more comparable to the new room we're now in at SCH. Unfortunately, I didn't get a panoramic photo of that room.)

Old SCH room's window view from bed (facing construction of a building to open in 2013)

New room's window view from bed (facing trees, the sky, and a playground)

New SCH room, facing toward window

New SCH room facing away from window

New SCH room's window view to the left

New SCH room's window view to the right

Seattle Children's Hospital old room panorama (view fullscreen)

Seattle Children's Hospital new room panorama (view fullscreen)

For comparison, the CHLA room where Jacob stayed last year (view fullscreen)

Day +3

Jacob's platelets were down to 10 this morning, so he received a platelet transfusion. His blood pressure was starting to trend high, so he had to start on medication for that. He also received his 2nd dose of methotrexate to prevent gvhd.

Jacob is getting stronger. The physical therapists were impressed with how well he did. They helped him walk around the room doing a scavenger hunt and he also played kicking the ball to them. I'm happy that his leg muscles are strengthening so quickly. The p.t.'s said Jacob is really pushing himself. One of them asked if Jacob was always this happy and good natured. She then said she hoped to one day have a child of her own like Jacob.

I was pleasantly surprised to see him go to town on his chocolate Easter bunny.

Day +2

Jacob didn't have any fevers today! Hooray! He also didn't nap today, so maybe that's a sign he's starting to feel a little better. He actually enjoyed playing in the bath for the first time in a week. He stood for a few seconds on his own this morning. He was happy to play with the physical therapists when they came by the room. He lasted about 10 minutes and then got a surprise nosebleed. Luckily it stopped right away. His platelets are very low which causes him to bruise and bleed easily. We will find out tomorrow morning whether or not he needs a platelet transfusion.

Day +1

Jacob has continued having fevers which could either be a sign of infection or a reaction to his new marrow. Of course cultures are being run and he had a chest X-ray this morning, and nothing has come up so far, so that is good. Jacob continues to sleep a lot and he is uninterested in food or drinks. This was our second Easter in a row with Jacob in the hospital. He enjoyed his Easter baskets. A big thank you to those who sent him things to help make this a special day! He had a lot of fun playing with his new toys and games.

Two Day Zeros

Jacob has two day zeros. Since the transplant started so late, it ran into the early morning hours. He got fevered with the infusion, which did not happen with his first transplant, so it worried me. But the doctor said that frequently happens and that he wasn't concerned. Jacob received a very good volume of cells, more than a child his size would normally get. This should help with engraftment, which probably won't take place for another two weeks. Until then, the team keeps a close eye on him, addressing any issues that may arise. Right now we are addressing his comfort. My poor baby is completely wiped out. He has slept most of the day and night since Monday when he started his atg. His little leg muscles have atrophied so much that he has not been able to stand since Wednesday. The physical therapists want us to do some specific exercises with him, but he does not want to get out of bed because he's so weak and tired. He does get a little burst energy every now and then and will sit up to play in his bed for a few minutes. Unfortunately, the team said he will feel worse before he starts to feel better. I'm glad the cells are infused and that we are one step closer to his recovery and healing. Please pray that Jacob will engraft 100 percent and that he will not get any graft versus host disease.

Transplant day

Yesterday was stressful. Jacob had to go on a morphine drip because his bottom is so sore. Also he started coughing some so they had to do a nasal wash, which requires squirting water up his nose and then suctioning it out. It is very traumatizing. Thankfully the wash came back negative for any viruses. With his immune system wiped out from chemo it is possible for old viruses that he's had to resurface. It happened during his first transplant. Please pray that it won't happen again. There aren't very many meds to clear viruses, so it can be very scary. They suspect that the coughing is the beginning of mucositis, the break down of the tissues inside Jacob's mouth and GI tract. It can be very painful. Please pray that it doesn't get worse. Jacob hasn't felt like eating or drinking very much this week, so he started on iv nutrition last night. Jacob also had to receive a blood transfusion yesterday, which is to be expected with his counts dropping so quickly. Jacob's bone marrow infusion is scheduled for 11pm. He will probably be asleep already. The actual transplant is pretty anticlimactic. It just looks like a blood transfusion that goes in through his central line. There is no operation involved. I'm happy this day is here though! In another couple of weeks, his new marrow should start to engraft and he should hopefully start feeling better.

Last chemo day

Jacob continues to spike fevers, but his labs are coming back negative for infection, so the doctor said it's a side effect of the atg. They have been able to keep the fevers under control with iv tylenol. He's also been nauseous and tired. His eyes are red and puffy and he's been very sensitive to light, which is a side effect of the fludarabine. He's on some strong anti nasea medications which cause him to sleep most of the time. Hopefully this will just be a foggy memory and he won't remember feeling so miserable. Chemo should be completely done around 4:00, and then his body gets to rest. Friday is transplant day.

Day -4

It has been a difficult day. Jacob started out really tired and shortly after he woke up in the morning, he was already falling asleep again. His body is starting to feel the effects of the chemo. The first two drugs infused without any side effects, but the dreaded rATG really wiped him out. It is still infusing and won't be done until around 10:30. They had to slow down the rate because his heart started racing, a fever spiked, he vomited twice and he started shaking briefly. They gave him a bunch of meds to make him more comfortable, which seem to have kicked in because he looks more peaceful sleeping now. He is still fevered and his heart is still racing (although not quite as fast as earlier). It's been a heartbreaking day. The doctor said that another patient on ATG had a really rough first day but then smoother second and third days. I hope that is the case with Jacob. He has been through so much.

Day -5

I am tired, but I just wanted to give a brief update. Jacob did great during his first two days of chemo. No immediate side effects during the infusions. He has been playful and has enjoyed going for walks or rides around the unit. We are taking advantage of leaving his room for little outings around the floor while he is not on isolation.

Tomorrow rATG will start along with the other two drugs he has had these past two days, treosulfan and fludarabine. Monday is the only day that he will get all three drugs. I'm nervous to see what Jacob's reaction will be. We've been warned about ATG so many times now, that my nerves are probably way more escalated than they need to be. Please continue to pray that Jacob won't have any side effects.

Day -7

Day -7 means that we are 7 days away from transplant. The days will count down to 0, which is the actual transplant day, and from then on, his days will be counted as +1, +2, and so on. This is the lingo used in the world of BMTs.

We are still scheduled to be admitted tomorrow at 8:00am. We will begin treosulfan and fludarabine as soon as is it prepared. These two drugs typically infuse without any problems. In fact, with older patients, they are infused on an out patient basis. They like to admit the little ones because they can't communicate problems as easily, so it's better to have the medical staff monitoring them closely. Sunday, will be the same two drugs. After that, things become more risky when he receives rabbit ATG for three days straight. Almost every patient has some type of severe reaction to it. ATG is necessary to prevent graft versus host disease (GVHD), where the new cells attack Jacob's tissues, seeing it as something foreign. It is important to suppress the immune system dramatically in order for the new cells to get settled and comfortable in their new home without attacking their new host.

This week has been difficult emotionally. Of course no one would want to put their child through this, especially twice, but we don't have a choice. I have to trust that our Heavenly Father is in control and trust in his plan for Jacob's life. I hope that Jacob will be able to be a living testament of our Father's love, mercy, and power.

A big thank you to everyone who is praying for Jacob and our family and submitting his name to temple prayer rolls. He continues to be infection free, his blood counts look great, and as far as I know, our donor is 100% on board to donate on April 6th. We give thanks for this wonderful woman and pray that her procedure will go smoothly.

The New Plan

Jacob's new admittance and chemotherapy start date is March 31st. This puts his actual bone marrow transplant on April 6th. For you church history buffs, this is a significant day of new beginnings and will be symbolic for Jacob's second birthday. I really hope the dates stick this time and we don't end up with another delay.

This past week has been so much fun! Jacob was super delighted to play with his brother. I wish I had taken a picture of the loving looks on Jacob's and Ethan's faces when we first picked Ethan up from the airport. It had been nine weeks since they had seen each other, and both of them were just glowing with huge smiles and loving eyes. They just couldn't stop looking at each other during the drive home and didn't waste any time getting down to business playing when we got them to the apartment. With Josh's parents here to help us out with the boys, we enjoyed a couple of really fun dates to the Space Needle and Pike Place Market. We also took Ethan to the Pacific Science Center. It seems like it was meant to be that Jacob was delayed last week so that he could truly enjoy the family time without being stuck in the hospital feeling lousy.

Thanks for the continued prayers. Please pray that he will continue to be infection free and that our donor won't back out so we can stay on track to start next Saturday. Also pray that his body will tolerate the chemotherapy without any damaging side effects, that his new marrow will graft 100%, and that he will be cured of CGD.

Delayed Again

I'm really ok with this. I thought it was going to be "third time's a charm," but apparently, we needed one more little delay. We were admitted and got settled into Jacob's room this morning, as scheduled. He was exhausted from a late night with Ethan and was red-eyed and grumpy. His nose was runny (we hope only from the crying), but it made everyone nervous enough to wait it out for one more culture result. A few hours and two nasal cultures later we were discharged. We are now back at the apartment, enjoying our family in a much more comfortable setting.

On Again, Off Again... On Again

I've learned not to get excited when we hear hopeful news because things change so quickly around here. Our 22 year old female donor who had some issue with her physical last week, has now been cleared to donate. Jacob is scheduled to be admitted and begin his conditioning on Saturday, March 17th. This puts his actual transplant date on Friday, March 23rd. We are hoping it is only about a month long hospital stay, as opposed to the 3 1/2 months we had to spend in patient at CHLA last year. I hate living in a hospital.

I have very mixed emotions about the news. I was perfectly comfortable hanging out with Jacob in our little apartment. Now I have to worry about him night and day for the next year wondering if he will pull through and if the transplant will engraft. On the other hand, I'm glad that there is some hope to cure CGD and that he is well enough to be a candidate for it.

Zoo

Yesterday, Jacob and I went to the Woodland Park Zoo. The nurses had mentioned on Thursday's clinic visit that I could take Jacob out, as long as we avoided crowds. Looking at our options of things to do around Seattle, I decided if the zoo wasn't busy, then that would be the best choice since we could steer away from crowds and keep Jacob in his stroller, which protects his hands from touching germy surfaces. Jacob says his favorite animals were the tiger and the wolf (of course, the two I didn't get pictures of). We enjoyed our outing and walked through the whole zoo in one and a half hours. It was very, very cold. We had our jackets, but an extra blanket for Jacob, mittens, or beanies would've been nice. We will have to remember those things if we go back.

The donor office contacted our team yesterday saying that they would know one way or the other on our donor by Monday. If she is cleared, we will be admitted March 17th with a March 23rd transplant. If she is not cleared, then they will immediately begin another new search.

Ethan's spring break is rapidly approaching, and I am so excited to see my other little man! I don't know if he misses me, but I have missed him so much. It's been really hard being away from my child for this extended period of time. A mother should not have to go through this kind of separation. As this continues to drag on, I am considering moving Ethan up here with me. There is a year round school here just for cancer patients and their siblings that I think he would really enjoy. I'll try to get a feel for how things would be with both boys when he is here for his spring break. It might be too much for one person to handle when Jacob is in the hospital.