Hair Loss and ANOTHER new room

Happy Halloween! I hope everyone had a lovely evening with their kiddos taking them trick or treating. They didn't do anything special here for Halloween. A few nurses dressed up, but nothing else. Cael was Tarzan! He even had a little "Cheetah" monkey to hold on to. Here he is from this morning. We couldn't leave the costume on all day since he kept getting the black fur in his mouth, but he had it on long enough for the doctors to see him and a few nurses. Everyone thought he was just the cutest Tarzan they had seen. :)

I feel like I did something so mean to Cael today. I lint rolled his head...literally took a lint roller and rolled it over his head several times to get off as much loose hair as possible. Yesterday, Adam ran his fingers through his hair and pulled out a few strands. Today, we woke up to a pillowcase full of his hair, and his gown covered in hair. He has lost probably 1/2 or more of his hair in just one day. I'll post another pic tomorrow, but the pics above in his costume are from just this afternoon. He lost his hair so quickly! I know he will still be cute without hair, and that it will all grow back, but it is so sad to see him losing it all.

We had to change rooms again today due to a broken water pipe in the other room. Late last night I noticed a lot of water in one of the cabinets by the sink, so they checked it and determined a pipe was leaking. Sigh...so we moved rooms. Again. This really better be the last move. I'm so tired of moving all our stuff. We have moved everything 5 times now, so we really don't want to do it again!

Cael is being a bedtime warrior tonight! He fell asleep in his Great Aunt Pam's arms around 8:00, but was woken up to change his dressing on his central line. He hasn't fallen back asleep and doesn't seem to have any intention of sleeping soon. He has never stayed up this late before! His breathing treatment starts now, so maybe the white noise of the fan will lull him to sleep.

Rolling, Clapping, Platelet Transfusion, and Hair Loss

Cael did lots of things today that he doesn't usually do. When the physical therapist came by, he rolled several times for her, which he would never do before. He has been able to for a long time, but just hasn't done it when we try to get him to. He also was trying so hard to get his knees under him. He usually just wants to stick his legs out to the sides and behind him like a little froggie, but today he actually seemed to be trying to get up into the crawling position.

He also has been clapping so much it seems he is applauding himself. So every time he claps, we clap with him and say "Yay Cael!" He just started clapping a few days ago, so we are pretty excited about it. During PT, when the therapist tried to get him to roll, he would just smile and clap, which seemed like he was trying to distract us from what we wanted him to do. lol

Tomorrow is Halloween! Cael has a cute costume, compliments of Adam's aunt Pam. I won't spoil the surprise. You will have to come back tomorrow to see a picture of his costume! He is so cute though. I guess all the nurses will dress up, too, which I bet all the kids really like. It's nice for them to get a little change around here.

Cael's platelets have gotten very low, so he is getting a platelet transfusion today. They were going to wait until tomorrow, and give him his IVIG today, but when he threw up this evening, his nose started to bleed and wouldn't stop. It probably bled for 30-40 minutes, just a little at a time. Platelets are needed to help blood clot, and since he is low, the blood just kept coming. So they decided to switch and do the platelet transfusion tonight and the IVIG tomorrow instead.

Now for the really sad news. It seems that Cael is starting to lose his hair. Adam said that every time he kisses Cael's head, a few strands come out. So he ran his fingers through it again, and sure enough, a few strands came out. One nurse said they usually end up shaving the kids heads when they start losing a lot of hair. Of course we were both hoping it wouldn't happen, but I'm not completely surprised. I don't know if we will shave his head. If it ends up really patchy, we might think about it, or if he is losing a lot so it is all over the place.

I guess some kids keep their eye lashes. Maybe he will be lucky and keep those. Everyone just LOVES his lashes. I'm sure he will still be the cutest baby around, even without his hair. :)

Calm Day

Not much going on today. I think it should stay pretty calm for awhile. Well, hopefully so at least. If it is calm, that means that there aren't any complications. His white cell count has gone down to 0.13, which means nothing to any of you, but we are looking for it to go down to 0.0. Normal is between 6 and 17.5.

Cael is still eating (Yay!), but not a whole lot. That's okay, though. We aren't pushing it. Since he is on TPN (IV nutrition), he is getting all of the nutrients he needs, so we just want him to get back to eating in his own time. I am hoping he will be back to a normal amount by the time we leave the hospital so he won't have to go home with a feeding tube or something. I don't really know what they would do if he wasn't eating enough when we left. He doesn't, nor has he ever, had a feeding tube, but I know those are common when they won't eat.

He was having some troubles with throwing up the past few days. He was getting an anti-nausea medicine to help, but it was stopped 3 days ago, the day before he was throwing up. So they have now restarted that, and he only threw up once today. He sneezed, and some came up. I don't think he would have thrown up otherwise.

Cael had physical therapy again today. I think he is stumping them a bit. They keep trying to get him to roll over or crawl to get to his toys, but he just looks at them and doesn't do anything. He is definitely able to roll from back to belly and from belly to back, but he only does so if he REALLY wants something, or is upset about being on his tummy. Crawling isn't really coming yet. He likes to stand, but doesn't walk yet either. He is just so content with wherever he is. He doesn't require a lot to keep him happy. So when they put his toys way away from him, he just looks at them, but doesn't really try too hard to go for them. They say he has the muscles, and they are pretty sure he has the strength, but he just doesn't WANT to crawl. lol. He is just too easily content. I guess I should be happy about that. At least he doesn't require constant distractions.

Appetite!

My mom called me this morning. Apparently, me not posting for a day might concern some people, thinking something is wrong. lol. Everything is fine. I just didn't get around to posting.

Cael has an appetite again!! Yesterday he ate 4 times! He still only took about 14 ounces, but the fact that he ate at all was awesome. Today, he has also been drinking. They started the TPN yesterday, which runs 24 hours a day. They will probably wean that down as long as he is eating consistently.

He absolutely HATES the breathing treatments still. He cried and screamed for an hour this morning until he finally calmed down. I even tried laying down next to him and rubbing his leg so he would know I was there, but that didn't work. I'm really hoping he gets used to it soon, seeing as he will be getting those treatments for a few weeks at minimum.

I can really tell that the physical therapy has been helping. Cael can sit so well now. He sits up so straight, and he can reach to the sides for objects without falling over. He definitely couldn't do that a month ago.

Last night, Jamie from my work brought us some super yummy dinner. My favorite food is mexican/ tex-mex, and we just can't get anything good around here. So she brought us some Chuy's, which is a mexican restaurant. Thank you!! We always appreciate meals that aren't fast food or hospital food.

Transplant Day!!

Today was Cael's transplant! It has been 3 months and 3 days since we first took him to the hospital because he was having problems breathing. We never would have imagined that he had RSV, para influenza 3, and pneumocystic pneumonia, let alone SCID. Thankfully the doctors listened to us and his medical history and were able to figure out what was going on.

The transplant itself was very unexciting. They hung a bag of fluid that had the cells in it which was given to him through his IV. It took only 30 minutes, and it was done! That simple. He seems to be having some sort of allergic reaction to something. His tummy is very red, but his shoulders and arms are fine. He is also red in his elbows, behind his knees, and at his hair line. They think it might be an allergy to the preservatives in the cells, since they were frozen and required preservatives to keep them viable. He has gotten some extra benadryl and hydrocortisone to help, but he still is very red. Hopefully that will go away through the night. The preservatives also have caused him to smell like creamed corn. lol. It sounds so strange, but his breath smells like that now. The nurse said it last a couple days, but it will go away.

The breathing treatments have become a bit of a nightmare. Cael woke up at 4:30 AM and was just screaming and screaming. I think it is because he was still in the box. The only way to calm him down was to pick him up and let him lay with Adam or me. Once the treatment started at 6:00 AM, I had to stand next to the crib and lean into the box and kind of hold him and bounce him until he fell asleep at 7:00. The box he was in this morning was big enough for him to fit entirely into. Later in the day we switched to a small box that is just big enough for his upper half. That way we can kind of hold him while he is in the box, without having to be inside of it. It seemed to sort of work. He only screamed for 10 minutes instead of an hour, while Adam just had his hands on him. So we will try this way out and see if it works better. Fingers crossed! I just hate to see him so upset and listen to him scream so much. He is uncomfortable enough just going through chemo and not eating, so to add this breathing treatment is just more torture for him.

Now it is the waiting game. We have to wait for the rest of his cells to die off and the new cells to engraft. It should take 2-3 weeks to see some results. Until then, we just wait and wait.

His Grace Foundation was awesome today! Because Cael got his transplant today, Adam and I got a feast for dinner from Jason's Deli. We got pasta, a sandwich, a 1 pound baked potatoe, broccoli soup, veggie soup, 2 fruit bowls, and strawberry shortcake! So yummy. We will have plenty for leftovers for at least 2 or 3 meals. It is so nice to have them helping out with some things and providing nice treats like the dinner they got us today.

Last Day of Chemo!!!

Today is the last day of chemo!

Cael still didn't eat today. He had 1 ounce for breakfast, which we were so excited about when he was actually drinking, but that was it for the rest of the day. He was so clingy and fussy today. He wasn't happy unless he was being held and rocked. So I had a lot of good cuddle time today. He fell asleep in my arms this evening while I was on the phone with my mom. It was so cute.

The doctor started him on the ribavirin again. The dang breathing treatment that runs for 2 hours at a time, 3 times a day. They started it again because he was positive for RSV in his weekly nasal wash. So they are going to keep him on it until after his new cells have engrafted AND he is negative for RSV. This also means that we will be changing rooms AGAIN once the contagious patient has left. I know they are doing all of this for the benefit of Cael, but I really hate moving rooms, and even more, I REALLY hate the breathing treatments. They are annoying for all of us. Adam and I have to wear N95 masks for 6 hours a day, and poor Cael is stuck in a plastic box 6 hours a day. I don't know how he is going to do during the day when he just wants to be held, but is required to go in the box. One of the doctors even said that if he is screaming, they want him to stay in the box. How do they expect me to let my baby scream until he passes out in the box? I really hope that doesn't happen, otherwise the doctor might not like what I have to say about it. lol. He also has been waking up at 6:30 - 7:00 AM - right in the middle of when his treatment is supposed to be. So I don't know how we are going to convince him he needs to stay in the box for another hour or more. I guess we will just have to see tomorrow morning.

No matter how bad he feels, he always has a few smiles for us. What a little trooper.

Not a Good Day

Cael ate absolutely nothing today. We tried several times, but he wouldn't take a single sip. He ended up sleeping a lot today, too, probably because he hasn't eaten in over 24 hours. I thought that when he finally stopped eating, I would be able to deal with it easier, knowing that the reason was the chemo. However, it still is so hard to see him not eating. He also has a rash on his chest from the dressing over his central line. I think it is causing him quite a bit of discomfort. He scratches at it and cries when we touch it. The doctors think it might be a fungal infection from sweating under the dressing. So we have to be careful that he doesn't scratch it then touch somewhere else, which upsets him when we pull his hands away from that area too. Poor guy isn't having a good time right now.

We have changed rooms...again. There is a patient coming in that has a very infectious illness that they don't want anyone to catch, so they need him in the negative pressure room. So we loaded up all our junk and moved it to another room for the 4th time! We have accumulated so much stuff, it is such a pain to move everything. Each time we move, we try to purge a little bit, but we still have so much more than when we first got here. Hopefully they don't make us move any more times. On the plus side, this room has really good water pressure in the shower. (It's the little things :) )

Chemo Day 7 - 3 to go!

As expected, Cael's appetite has gone down even more. The nurse tonight said that he is losing his taste buds, which might be part of the problem. We also noticed that his skin is darker today than it was yesterday. I thought it was from his blood transfusion he got last night, but the nurse said it is probably the chemo. So it seems that the effects of the chemo are happening.

For the past several days of chemo, we have seen his white blood cell count get lower and lower (as we expect with the chemo). Today it jumped back up a bit. The doctors explained that this will happen. It will be a bit of a roller coaster of ups and downs, even after the transplant. The count is not needed to be at 0 for transplant. By Friday, whatever small amounts of white cells he has left will be weak enough that they will be killed off by the new cells that come in during the transplant.

Otherwise, Cael is still doing great! I am so surprised he is as active he is and as happy. He is eating so little, I expected him to be tired and weak, but you would still never know he was sick. I feel very fortunate to have such a trooper.

Just 3 days left until he gets his stem cell infusion!

Ramblings

I never imagined there would be so many people who read this blog, or that so many people would stumble upon our facebook page. When I posted our now "famous" (at least it is to me!) photo of Cael in his crib, I was hoping to get a couple hundred "likes". I was NEVER thinking it would reach 138,470 (as of 9:44 PM lol). That photo is also the reason we have 2,883 page likes and over 800 people who read my blog yesterday. Would you believe there was one day where 11,000 people looked at this blog?! It's amazing what the internet has enabled us to do.

Many people have contacted me about their own experiences with SCID in their own children. I know this disease is not common, and for so many to have found our page or blog and to feel the urge to share their experience with me is great. I love to hear success stories of their children getting stem cell transplants and are now living completely normal lives years after the transplant. I have also seen several who have had sad stories to share of losing their child to SCID. I am so sorry to all those parents who have had to endure the loss of a loved one, especially when it is a child.

I am not a religious person. I never have been. I still haven't found any deep religious meaning or feeling through all of this. That being said, I appreciate so much all of the prayers and support being sent to us from people who have never even met us. I know how important religion is to so many people, and for them to find it in their hearts to include us in their prayers means so much to me.

My sister is AMAZING. She lives on an entire other continent, and yet, has made it her priority to help us. She rallied her mum troops and put together a walk to help raise funds for us. Between her and her 8 other mum friends, they were able to raise over $2,100! All of the mums walked 6.5 miles with their army of 2 year olds. 2 YEAR OLDS...walking 6.5 miles....can you imagine trying to keep them all happy and together and not going completely insane? :) You all are so wonderful. Thank you Crystal, Emma, Tracey, Michelle, Susannah, Miki, Teresa, Julie, Irene, and dads, Ian and Guiseppe.

Thank you to everyone else who has also donated. I was trying to work part time in our Houston office, but that became too difficult when Cael got really sick a month ago (he was throwing up 5 times a day, wouldn't eat, and ended up in the ICU). Every donation means a little more time I can spend at the hospital with my little guy. Fortunately, my work has been incredibly supporting and understanding through all of this, and has allowed me to take the time I need to be away from work and at the hospital with Cael.

Now for the real reason you read my blog...CAEL! He had a good day today. He started the Cytoxan last night, and it doesn't seem to have bothered him too much. He was still a happy chappy, as my sister says. Tonight he starts another chemo, called Fludarabine. He will get this one for 4 days, as well as the Cytoxan for 3 more. Then the stem cell infusion on Friday. I can't believe it is almost here! It is so helpful to have milestones to look forward to. First the transplant, then we will be looking for certain numbers of cells, then it will be looking forward to when he is in the clear for the infections, then when we will be leaving the hospital, then finally when we get to go home. HOME! I can't wait to go home. I miss home so much. My bed, my pets, my house. I miss shopping...just grocery shopping, or shopping for toys for Cael. And as Adam reminds me, I hated shopping. I just miss the normal of everything.

Sorry, back to Cael. He has a new favorite game. We call it "pass the baby". As soon as we sit him up in the crib, he holds his arms out to be picked up. Then if Adam picks him up, he finds me and holds his arms out to me. There were 2 doctors and a nurse in the room. He was passed between them about 4 times before they finally tore themselves away from us. :) He really loves the attention, and has NO problem with all the new people. I think he is going to be a very social little man when we finally get him home. :)

New Chemo Today and Success Rates

Today Cael starts the new chemo, and with it a few new medications. The new chemo, Cytoxan, may affect the kidneys and liver, so he is on some extra medications to help prevent any issues for either of those. They have also increased his fluids a lot and added some lasiks (diuretics) to help him pee a lot, which will help keep his kidneys clear.

He has done great so far. He is still happy, not throwing up, and hasn't needed a blood transfusion yet. The doctors were surprised that he hasn't needed a transfusion yet. A normal level for the hemoglobin is 10.5-14. Cael is at 8.2. They will do a transfusion if his level goes below 8.0.

I spoke with the doctor about the success rate of the transplant. She said that in the past 10 years, Texas Children's has given 35 SCID patients stem cell transplants. Of those, 85% have survived. In the past 4 years, they have done 8 stem cell transplants using cord blood, and all of those patients have survived. The reason the 15% did not survive was that they had very bad infections going into the transplant, which ultimately lead to their deaths. Cael also has some bad infections, but not as bad as the 15%.

The most concerning part for the doctors is the time after the stem cells engraft, when the infection in his lungs inflames. His lungs will also inflame as an immune response to the infection. They are concerned with all the inflammation that he will not be able to breathe. They are going to give him some steroids to help the engraftment be a little slower than typical, and to help reduce the inflammation in his lungs.

I am sure Cael is going to be just fine and make it through everything like a champ. He is such a little trooper. I am amazed every day that he is as happy as he is. I do believe that the better attitude we have, the better Cael will do. So we will continue to do our best to be upbeat and positive. Honestly, it hasn't been too hard so far. I feel like I am naturally a positive person. I always try to find the best in everything. Even if a lot of things are bad, there is always something that is good. Adam seems to be the same. I haven't really felt like he has been sad or upset either. That's what is awesome about us being in this situation. We seem to be coping with everything pretty well. I know there is a lot to come, and the road will be very tough, but we have such amazing support in our families, that I know we will make it through everything, too.

Cael's type of SCID

We finally have an official diagnosis of the type of SCID that Cael has. It is called IL2RG, which stands for interleukin 2 receptor, gamma. I can't explain all the specifics about it. What I can say is that it is an X-linked SCID, which is the most common type of SCID. However, the amino acids on the gamma chain that are affected in Cael have only been identified in 6 other cases. So his exact type of SCID is VERY VERY rare.

Now get ready for your biology lesson for the day. :)

X-linked SCID usually only affects males, and is passed on from the mother. A female has 2 X chromosomes, one from Mom and one from Dad. If Mom passes on a defective X, then the unaffected X from Dad will fill in the bad parts of the X from Mom. She then becomes a carrier of SCID, which she can pass on to her kids. A male has 1 X from Mom and 1 Y from Dad. So if Mom passes on a bad X, then the Y from Dad cannot fix the bad X. That's why it usually only affects males. However, there must be the rare case in which a man who has been treated for SCID has a baby with a woman who is a carrier of SCID. Then they could each pass on a bad X, and have a girl who has X-linked SCID.

It really doesn't matter what form of SCID Cael had. The treatment for all forms of SCID is to get a new immune system by way of a stem cell transplant. 

In Texas, where Cael was born, they are going to be including a screening for PIDD (primary immune deficiency disease, which includes SCID) in the newborn screening starting next month. I don't know how many other states have this test or will be incorporating this test soon, but it seems like one that, if included, would help save so many families a lot of time in the hospitals and a lot of stress dealing with infections and illnesses.

Chemo Day 3

Today was Cael's third day of chemo. They also did the blood draws every 30 minutes again between doses 9 and 10. They want to check the levels of chemo in his system, to make sure it isn't too much or too little. They did that after the first dose, then reduces the dose he would receive.

He ate a little less today than yesterday. We definitely think he is feeling the effects of the chemo. The doctor said they wouldn't be able to start IV nutrition until after the chemo is finished because they can't have the TPN interrupted every few hours in order to give another medication. I don't really know why it matters if the TPN is interrupted. It seems that 3 hours at a time of TPN would be better than no TPN. The doctors will talk with the dietitian to see what she thinks about it. Maybe she will say it is fine. Otherwise, it will be another week until he can get TPN. They do have him on fluids, but I don't like him missing all those nutrients. 

Aside from the eating and little bit of throwing up (none today, just a couple times yesterday), he is especially clingy today. We would sit him up to play in the crib a little bit and he would hold his arms up to be picked up. So sweet! He just wanted to be held by Mommy and Daddy. He was still smiling and playing though, so that's good.

Adam's uncle Joe stopped by this evening to visit. Since Cael is getting chemo now, all our visitors must wear the gowns and masks. Extra precautions to keep him from getting sick. It is nice to have some visitors every once in awhile. Joe and Pam have been coming by every week for quite some time now. I think they enjoy getting to see Cael just as much as we enjoy having some visitors. :)

Chemo Day 2

Today is Cael's second day of chemo. He has received 6 doses so far, and is currently receiving his 7th dose. He has been acting great so far. He gets really tired after the anti-seizure medicine, but otherwise he seems like his normal self. They said the Busulfan is usually very well tolerated, but it seems like he is experiencing a few of the side effects. He has thrown up 3 times today and once last night. It's not a lot. But he doesn't usually throw up, so we know he is feeling nauseous. And I think it is because of that, also, that he isn't eating well again. As this continues (since we are pretty sure it will), they will start him on TPN (IV nutrition). That will continue until he decides he wants to eat again.

On a lighter note, we were officially welcomed to the BMT unit by "His Grace Foundation" with a big ol' gift basket, full of toys for Cael and some snacks for us. What a generous thing it is for them to do! They also provide parking for us, dinners twice a month, and occasional lunches. They are a foundation that serves the families of the BMT unit here at Texas Children's.

And the happiest thing of all..Cael now LOVES to give kisses! And he loves to dance. He also now knows what those two things mean. When we ask him to give us kisses, he does. And when we sing to him "dance, and dance, and dance dance dance!", he starts to bop up and down in our arms. It is so cute, and so fun.

Go to the facebook page to see a super cute video of him giving his daddy kisses.
www.facebook.com/CaelsLife

Happy 10 months Cael!

Today, Cael is 10 months old! We have been here at Texas Children's Hospital for 2 months now, and almost 3 months of total hospital time at this point.

He started his chemotherapy this morning at 8:00. It has been a busy, busy day so far. Here is what has happened so far (and it is only 3:30 PM)

7:30 wake up
7:45 bottle of formula
8:00 oral dose of adavant (anti nausea)
8:00 IV ciproflaxacin (preventative antibiotic)
8:00 IV busulfan (chemotherapy)
8:15 physical therapist came by to play
10:00 finish IV busulfan and ciproflaxacin, start IV fluids
          start IV fluids
          draw blood (every 30 minutes until 2:00)
10:15 IV protonics (to soothe his tummy)
1:00 occupational therapist came by to work with him (pretty much the same as the physical therapist)
2:00 start busulfan (will end at 4:00)
3:00 zofran (anti nausea)

He is doing great. The busulfan chemo isn't supposed to be too bad. And once he gets the cytoxan, it will still take a week or so for the side effects to really be seen.

We got a special mouth wash that we will be using several times a day to make sure his mouth is nice and clean. We don't want any bacteria growing in there while he has no immune system to get rid of it. We also have special soap to wash him with. They are very careful now that he has started the chemo to make sure he is clean and not getting any sort of infections.

Looks like he is awake from his nap, so I better go entertain him for awhile. :)

Chemotherapy has officially begun

The chemotherapy process has officially begun. Cael has started an anti-seizure medicine to reduce the risk of seizures while on the chemotherapy medications. Tomorrow he will get another dose of that, and also start the first chemo drug. He will start with Busulfan, which he will get for 4 days. Then it will be Cytoxan for 4 days, then 1 day of rest, with the stem cell infusion happening next Friday, October 26. He gets the Busulfan every 6 hours, and the Cytoxan is just once a day. He is also getting fluids around the clock to make sure he is very well hydrated. They are giving him penicillin as a preventative antibiotic.

The side effects of the chemo are nasty. For Busulfan the side effects are seizures, rapid heart rate, darkening of the skin, sterility and rarely liver or lung problems. The seizures are being addressed by the anti seizure medicine he received tonight and will get in the morning. Sterility affects about 25% of the patients who receive Busulfan.

Side effects of Cytoxan are upset stomach and vomiting, mouth sores and stomach ulcers, fluid retention with seizures, diarrhea, bladder problems that cause pain when urinating, hair loss, skin rashes, and rarely heart damage, cancer, lung damage, and blurred vision.

Now, I realize that these side effects are awful. I also know that several people will wonder why we don't try more natural things to help. The thing is there is no other way to cure SCID. SCID is not like cancer. It isn't that Cael has bad cells, as it is with cancer. Cael just doesn't have the cells. He is missing his T cells, B cells and some lymphocytes. The reason he goes through chemo is to get rid of what little amount he does have so when the new cells come in, they won't attack his existing cells, thinking they are a foreign body.

I am nervous about what is to come in the next few weeks. I really hope he does well with it and doesn't get TOO sick.

photos by N.Cole Photography

As promised, here are a couple pictures taken by Nicole of N.Cole Photography.

http://www.ncolephotography.com

You would never believe we were in a hospital, or that Cael was sick at all! Nicole did an amazing job. And Cael was the perfect model.

There are more pictures on the facebook page. http://www.facebook.com/CaelsLife

Photography and a new room

Cael has been moved back to the room he first started in when we arrived at Texas Children's. It is a negative pressure room so when he restarts the ribavirin tomorrow, he will be in the correct room. Ribavirin is an inhaled medicine that he was on previously for the paraflu. They plan to have him on it again until the transplant, at which point, I think they will either switch to the IV form, or stop it.

A photographer came to take some pictures of Cael today. She is a friend of my boss's wife. Her name is Nicole, and she was great! If you are in the Houston area and want some pictures, please think of her. Her website is www.ncolephotography.com/. She was so great with Cael. We are hoping for some nice pictures of him before he goes through chemo and looses his hair and doesn't feel like smiling. He was a champ. He was napping when she arrived, and I accidentally woke him up while trying to just move a blanket. He was in a good mood the entire time, and didn't even fuss. He was very chill the entire time.

His chemotherapy will start on Wednesday. He will get the chemo for 10 days, with the transplant immediately following. I plan to soak up all the wonderful Cael time I can tomorrow and all the play time I can get. He is cord free right now, so we can do so much more. Once he starts the chemo, he will probably be tied up by an IV for several weeks. His IV will be used for the chemo, other medications, fluids, and maybe IV nutrition (TPN). Good thing it is finally working well now, as it will definitely get a work out for awhile. 

Quick recap for new readers

I can't believe how many people have liked and commented on my picture of Cael. Thank you to Adam's Uncle Joe for taking that picture. And thank you to everyone who has started reading my blog! I can't believe how many new people are reading this! I appreciate each and every one of you so much.

If this is your first time reading this, I'd like to welcome you and clarify one major thing. Cael does NOT have CANCER. He has SCID, which stands for Severe Combined Immune Deficiency. It is a hereditary, genetic condition in which he was born without T cells. Those T cells are a major part of the immune system that controls his ability to fight infection. It is not something that can be cured by any method other than a stem cell transplant. To get that transplant, they must give him chemotherapy to wipe out his existing immune system. The reason they need to wipe out his immune system is to reduce the risk of Graft vs Host Disease (GvHD), which is one of the leading risks with a transplant. GvHD is when the new donor cells recognize his body as foreign, then attack his cells. So the less cells he has, the less risk of GvHD.

To understand more about what Cael has, and the process that has gotten him to the chemotherapy stage, please continue reading my blog. It details all the things that have happened from the time he was diagnosed with SCID until now.

Happy Reading!

Finally back to the BMT

Cael has finally been transferred back to the Bone Marrow Transplant Unit! Hurray!! We were told at 10:00 pm that we were moving upstairs, and here it is 11:30, and we are settled in and I'm blogging. Unfortunately, they woke up Cael, who has finally stopped waking up in the middle of the night. It sounds like he is asleep again, so at least it wasn't too long.

He will start chemotherapy this coming week. I'm looking forward to the process getting done. Not so much to the whole process itslef. I know he will be a trooper and fight his way through it, but I still don't want to see him sick and miserable.

I plan to spend the next few days taking lots of pictures of him before he looses his hair and doesn't feel like his happy self. So I will post a few pictures soon!

PT, CT, meeting with doctors

A physical therapist came by yesterday to assess Cael's development. He isn't crawling or walking, which isn't so concerning to me, since I know all babies do that in their own time. However, he still isn't sitting up on his own very well. He still topples over whenever he reaches for something or if he leans too much one way. The PT said he is only at a 6 month level right now. His back muscles are pretty weak. Some of that is due to him being sick for so long, but some of it is probably mine and Adam's doing, from us doing too much for him. The PT is going to come by 3 times a week to work with us and him to get him stronger and able to do more. Even once he starts the conditioning, I think they will continue to work with him.

Cael had another CT yesterday. The radiologist said the scan looked the same as the last CT from 2 weeks ago. So his healing has plateaued. The transplant doctor said he needs to talk with the rest of the transplant team, but he thinks they will be moving forward with the transplant process next week. His conditioning should start early next week, with the transplant being about 10 days later.

We had a meeting with the Allergy and Immunology doctors, the transplant doctor, and the endocrinologists today. The endo doctors said they aren't going to do anything else with his calcium since it has stabilized within the normal range. A&I said there is nothing else for them to do right now, and that he is ready to go to transplant. The transplant doctor, as I said, needs to talk with the team, but thinks we will move forward. He also said that since Cael still has the para influenza and RSV, it is going to be a very difficult process to get him through the transplant. He even told us that there is a chance he will not make it through. We always knew there was a chance that he might not live through everything, but it was more of an outlying possibility. After talking with the transplant doctor, it seems like a much more real possibility. As I understand it, the reason he said this is that once Cael gets the transplant, his new immune system will cause his lungs to inflame as the immune system tries to fight the infections that are there. The inflammation makes it harder for him to breathe. There are things they can do to help him breathe, but there is still a possibility that he will not be able to, and it could lead to death. I may not have all of that exactly correct, since once he said there is a chance he could die, I think I kind of glazed over for a minute.

We also asked about the timeline of things. It sounds like the average hospital stay is about 4-6 weeks from the start of conditioning, and the time required to stay in the Houston area is about 3 months after discharge. This is a lot longer than I was thinking. Plus with the infections, he might have to stay in the hospital longer than 4-6 weeks. Of course, since we have a doctor in Austin who used to work here, and is still very much in touch with the doctors here, we might be able to go back to Austin sooner than the average patient. We really won't know the exact timeline of all that until he has had the transplant and they see how he is doing.

Even with the information we were given today, I am still thinking positively about everything. Cael is such a fighter, and he will continue to do just that through everything.

October 9

You will never be so concerned with your child's eating and...hem hem...pooing routine as you will if they are in the hospital. Oh, and add weight to that. Every day we record his weight, how many ounces he drinks, and when he goes to the bathroom.  The doctors watch his inputs and outputs very carefully to make sure he is properly hydrated and getting enough calories. They also ask every day how his poo looks.

That being said (and as much as you probably don't care), Cael is no longer having diarrhea! This is a very happy thing for us as it has been nearly 10 weeks since he started having diarrhea.

Now for the eating.  He hasn't eaten great for the past 3 days. I think it might be associated with his calcium level. It jumped up a few days ago and has slowly been coming back down. He has been eating a little better each day since the worst day 3 days ago. He isn't doing terrible. Not as bad as a few weeks ago. Just not quite as much as he should be taking.

Now for a complete change of topic. I have a great boss. (I know you are reading this!) He is in Houston for a charity golf event, and he stopped by the hospital today to bring me dinner and visit with us for a little bit. It is so nice to have a visitor once in awhile. Especially when they bring yummy food. :) His wife also sent me some books. Thank you for those, too! Cael was great while he was here. He was giggling like crazy and so happy. It was a good day for a visit. I miss work, and dare I say it, my work buddies. (I hope they read this, too) I can't wait to be home again with things normal enough that I can go back to work.

New central line

On Friday, Cael got his new central line. It is a broviac central line that goes into a vein in his neck, and the other end is tunneled under his skin and comes out about 2 inches below his colar bone. He was put out while they did the surgery. He did great! He was pretty groggy the rest of the day, but still slept well. He was a "work in" for the procedure, so he had to stop eating at 5:30 AM. His surgery didn't end up being until 3:00, though. Poor guy was starving by the time they took him. And he didn't really eat the rest of the day since he was so tired from the anesthesia.

Saturday, he was still in a little pain, but otherwise doing very well. He ate great and was pretty much back to himself.

This morning the nurse said she wasn't able to get any blood return from the new line. The vascular access team was going to come to try to get it working, but the day nurse just tried it and was able to get it working. Hopefully that was just a one time fluke that won't be a big problem in the future. It will be super important to have working for the next several weeks. He is going to be receiving medication 24/7 once conditioning starts. We will probably even be going home with it in him. I think that is in case he needs any medications when we go in for checkups, which will be very often for the first few weeks.

Adam's aunt Pam and uncle Joe stopped by for their weekly visit on Friday. Since Cael was pretty out of it, Pam got a lot of good cuddle time in.

We are still waiting for the transfer. It will probably early this week. We are just waiting for a bed to be available on the BMT or the hemotology/oncology floor.

Pretty boring today, but I guess that is good. I'd rather have slow days than lots of excitement due to issues or complications. We just need to get his line working and it will be a good day again today.

Doing good today

Cael's picc line started working again after they did the alte plase thing. However, he is going to be getting a new line tomorrow. I think it is going to be a broviac catheter, which is placed in the chest. Apparently it is better for long term use, vs a regular picc line. The picc line he has is out from where it was originally placed, by 1.5 cm. The vascular access team said they wouldn't even consider it a central line any more. He is being put on the surgery list as a work in, so he has to stop eating at 5:30 am, in case he can be worked in first thing. However, I'm not sure what we do for eating if he can't get worked in until later in the day.

His calcium levels have stayed steady, so nothing is going to be done right now. The ionized calcium level is a smidge high, but the overall is within normal limits. As long as it doesn't increase again, nothing is going to be done. He is going to be switching formula to a special type with no calcium in it. Otherwise, no more shots or extra fluids.

He has had very good days lately. He is eating great, very energetic, and so happy. It's great to see him this way.

The transplant doctor came to talk to us. He said he wondered if Cael would benefit for m a little longer before transplant to let his lungs heal a little more. They want to do a CT next week to see if the lungs have gotten any worse. If not, he will go on to transplant. They keep doing that - do a c
CT, then wait 2 weeks to see if it is any better. We are so frustrated with the process. Hopefully this will be the last one, and he can start conditioning. It certainly won't be starting on Monday, as the last doctor was hoping.

We are set to be transferred to another floor,but still not back to bone marrow transplant. They want him on the 9th floor, which is the hematology and oncology floor because there are residents available at all hours, in case something is needed. They are still concerned about his high heart rate, and don't want him back at BMT just yet. This is another thing that is very frustrating. We don't want to be moved so many times. Each time it is a whole new set of nurses and doctors to deal with, meaning more people who don't know Cael and don't know his case. We just want him to be on the BMT floor, where he will be for several more weeks. The transfer may happen as soon as tomorrow. The doctors said they would talk with the transplant doctors about where to send him. I'm still hoping they decide on the BMT unit. Probably not, but I will hold on to the hope a little longer.

Picc Line Problems

I have tried very hard not to write everything I am thinking and feeling about this hospital and the doctors and nurses we are dealing with. However, today I am especially upset with the way things are being done here.  Cael has had a picc line for almost 10 weeks.  It was put in at Dell, where the did a fine job. When we got to Texas Children's, we were told that he would need a new line put in that had 2 lumens. He needs to have 2 for when he is getting chemo and also needing another medication or TPN that is not compatible with the chemo. Basically, there would be 1 line that has 2 halves so the medicines won't mix.

Today, his picc line stopped working. The nurse wasn't able to get the labs drawn this morning, so she left a not for the vascular access team to come look at it.  Well, it took them 10 hours to finally come and check on it, and they couldn't get it to work either. The medicines could go in, but they couldn't get any blood to come back out. This is a problem since they need to draw blood a couple times each day. Later in the day, they couldn't even get meds to go into the line correctly. It has become sluggish. So now, we are at the point that a new picc line is absolutely necessary.

They put in a regular IV in his hand until they can get the picc in. Well, Cael really likes to chew on his hands and use his hand to hold things like toys and his bottle. He cannot do that with the IV in his hand. Also, he keeps trying to put the IV end into his mouth. So now we are constantly trying to keep it out of his mouth, and keep him from pulling it out of his hand. Plus, they don't even know if they will be able to get a blood return from the IV. If not, they will have to stick him every time they need to draw blood.

They had 6 weeks to get the new line in, and they waited until the one he has stopped working. I am not happy that they waited until the line stopped working. They should have taken care of this awhile ago. I understand using the one he had while it was still working, but I don't think it should have gotten to the point where this one doesn't work at all.

The vascular access team is coming back tonight to try to use alteplase to clear the line. Hopefully it is just a small clot on the end of the line, or the inside of the line has become clogged. The line has been pulled out a little at a time for the past 10 weeks. It has come out 1.5 centimeters farther than it should be, so now it is out too far, which might be causing the problem. But yesterday it worked fine, so I'm just hoping it is something that can be fixed with the alteplase. Then they better get the new line in soon so we don't run into this problem again.

Another issue with all this is that since it took the vascular access team 10 hours to finally come and check it (it was about 4:00 PM when they came), they didn't get the value for his calcium until about 6:00. It is still high (1.38). I guess it was too late for the doctors to put in orders for something to be started to deal with the high calcium, because nothing has changed to deal with that. I'm hoping his calcium hasn't gotten higher tomorrow, due to them not doing anything about it tonight.

Ok, rant over. Hopefully this is all fixed and tomorrow I can stop stressing about the IV in his hand, and hopefully they will have a plan for his high calcium again and start it tomorrow.

Calcium is up again

Cael was having a few good days. He was eating very well (30 ounces yesterday!), his heart rate was down (120's while sleeping and 170's while awake, vs 150's and 200's), and his calcium was staying in the normal range (1.2 - normal is 1.1 - 1.3).  They stopped the extra fluids and the diuretics on Sunday, then yesterday he had his last calcitonin shot. He was a bit on the fussy side, but that could be all the other medicines he is on, like the adavent, zofran, benadryl, and the steroids.  It could also be that he has so much energy and not much of a way to use it.  He still isn't crawling or walking, and he is on a very short line (IV), so he can't go very far. We have been putting him in his jumper, and he just loves it! He bounces like crazy, especially when the music starts going.

Today, however, the doctor said his calcium has gone up again. It is at 1.36 yesterday. I'm not sure what it is this morning yet. When they tried to take his blood at 6:00, the couldn't get any. The vascular access team is going to look at it this morning. This isn't the first time that has happened. The doctors still don't know why the level was high, so I don't really understand how they expect the level to stay lower when they take him off all the medicines controlling it if they haven't done anything to correct the reason it was high in the first place.

The not so bad news about that is that this shouldn't affect the transplant. They originally wanted the calcium under control before going into transplant, but I guess since it is close to normal, and they know how to get it normal again, they will proceed with transplant. The A&I doctor said they would even go through transplant with him still getting the calcitonin shots, if need be.  It's just getting to the point that they don't want to put off the transplant any farther.

Of course, the transplant team may say something different that what we have been told so far.  For right now, we are still thinking he will start conditioning next week, then get the transplant a couple weeks later. We should be hearing from transplant doctors soon about what date they have set for the actual transplant.