Month: August 2014

Today was another wonderful “boring” day. Clark is in a great mood. Flirting with the nurses and insisting the doctor listen to his knees instead of his heart with the stethoscope.

There is a  psychiatric ward a floor or 2 below us.  They have a kind of outdoor “compound”, enclosed with high walls and barb wire.  Our guess is that their stay isn’t 100% voluntary.  We are still trying to figure out what type of behavior the patients exhibit to be admitted (more on this as we find out).

Their “rooftop patio” is equipped with a basketball hoop, badminton net and some lounge chairs. We try to align Clark’s “window time” to see the psych patients playing. Sometimes they look like they are in a medicated lull, but today they were more lively and we had fun watching them play! There was even a patient playing guitar. Too bad our windows don’t open, because it would have been nice to listen.

A vital part of Clark’s care revolves around his central line, aka double lumen broviac. This line is key to Clark receiving his medicine and having blood drawn. Without this, Clark would be covered in holes and bruises from ongoing attempts to put IV lines in his arms, legs, or anywhere else they might have luck getting a vein.  The double lumen broviac has 2 lines, one red and one purple.

A couple of days ago, Clark’s red line (the one they typically use to draw blood) started to feel sluggish. Instead of having an easy time drawing blood, there was resistance. And over the days it only became more resilient.

To prevent clotting in the line, Clark has a “maintenance” drip of saline constantly going into both line when there are no medicines being administered. The resistance in his line is most likely from blood clotting in his line, or from a medicine that leaves residue inside the lining of his tube.

Instead of waiting until nothing would draw at all, it is best to do something to clean it out ASAP. At home, when there are no maintenance IV lines pumping liquid through, we do a Heparin lock (aka “Heplock”). Heparin fills the line and helps prevent clots from forming. We would do a Heplock every 24 hours. In this case, we already had a clot or build-up, so we needed something stronger to clear it up. So last night we put tissue plasminogen activator (TPA) in his line for two hours. TPA is a protein involved in the breakdown of blood clots. This is only used in the line, and does not enter his body. Once the TPA has been in the line for approximately 2 hours, it is drawn back out with a syringe. So today, after using the TPA, his line is clean as a whistle!

Today was another great day! The nurses and doctors believe Clark is having very mild side effects of the chemo.  We’ll take that… and we are grateful for it.

So many of you have been asking about the plane that scared Clark. Well, here it is.  It definitely isn’t the friendliest looking thing, that is for sure. We think it’s the engine sounds frightens him.  No worries, say the word little man, and I’ll get Daddy to take this to a quiet farm up in Northern California, where it will live out the rest of its days playing in the fields and sunshine.

Day +6 started REALLY early for us.  At 1:30am, Clark started whining, sat up, and started emeses (plural form of emesis). Thankfully this was short lived, and he fell back to sleep once we changed his sheets.

Clark had an exciting morning while playing with the Child Life Specialist. They played with puzzles and a toy car slide while sitting on a large mat on the floor. There was also a cool airplane that made flying sounds. For some reason the airplane freaked Clark out! Once he started using the “all done” sign, I decided it was best to hide the airplane in the closet. :)

Throughout the morning, I have noticed a small rash on Clark’s body that comes and goes. At first it was on his inner thighs, then his back, followed by his cheeks. One minute they will be there, the next they are gone. A rash can be a sign of GvHD, so I told the doctor once he came in the room to do his rounds.

But not this time… I was told the GvHD doesn’t usually show up until the engraftment stage (still about 2 weeks out). So the doctor isn’t worried about this rash being GvHD.  Instead, there is a chance this could be something called Peri Engraftment Syndrome (ES). It was described to me as a slight reaction to the new bone marrow. This can cause an unknown fever, rash, and occasionally inflammation of the lungs. This is usually treated with corticosteroids. Once treated, it usually lasts 1-5 days. We are not at the point of starting corticosteroids yet, because we are not sure if ES is the culprit.  More watching, more waiting…

While Clark is in the hospital building up his immunity, he is on a long list of IV fluids and medicines. One of his many transitions in preparation for going home, is to switch his IV medication to oral meds (can you imagine us at home with an IV pole? No way!) Today was Clark’s first switch! He started his Cyclosporin (Neoral) orally at 7am, and will be given this every 8 hours for the next few months.

Clark’s Neoral levels will be closely monitored until the doctors feel he is getting the proper dose before going home. Cyclosporin helps prevent GvHD, but there is definitely too much of a good thing when it comes to this medicine.  Side effects from too much Neoral include damage to the liver and kidneys. It can also cause elevated blood pressure, shakiness and rare cases, seizures.

We also meet with the nutritionist weekly. She makes sure Clark is eating enough foods and gives advice on how to increase his calorie intake. If Clark stops eating, he will be put on an IV nutritional supplement. Loss of appetite could be due to mouth sores called mucositis, or from nausea. Both are common short term side effects caused by the damage done by the chemo.

We would prefer to avoid IV nutrition, or at least prolong his eating as much as possible. We can help prolong his intake by “giving in”, and feeding him cookies and ice cream for dinner! The nutritionist has some better/healthier ideas, such as adding sour cream to his soup or drinking pediasure as a supplement. I am not a huge fan of high fat or high sugar diets, but I would prefer this (for the short term) to using IV supplements since they can have a host of side effects including GI issues, liver damage and more.

Overall, Clark’s day was quiet without any (obvious) nausea. Here’s a interesting word of the day for you… “Emesis” is the medical term for vomit.  Doesn’t that sound nice?  Clark was emesis free today.  Clark’s nemesis is emesis.  Ha, ha…

Clark had a long nap this afternoon and finished out his day with a fun visit with daddy.

This is the dreaded Day +4.  This marks the starting of Clark’s lowest counts. This is the beginning of when we expect to see his negative reactions to the chemotherapy, as well as when he is the most susceptible to infection.  It is also the ideal opportunity for the new bone marrow cells to start growing.

Patrick and I had the opportunity to go outside and grab some lunch this afternoon. Clark has just fallen asleep, and we had an hour and a half until he needed his next set of oral meds. We made sure the crib railings were secure. The nurses turned on the camera and sound for the room, and we were on our way!

It was such a beautiful day outside, with the sun shining and a cool breeze blowing. The neighborhood around UCSF is very San Francisco-esk with the tall 3 story homes and the steep hills. We made it to a nearby taqueria and had just enough time to order our burritos when my phone rang.

It was the hospital… Apparently (in the 15 min we had been gone) the nurse had to turn Clark over because he was squishing an IV line (this happens often). Clark started coughing, which turned into full blown vomiting! It sounded like the nurses were having a hard time calming him down, and needed us to come back ASAP!

Luckily, the nurses managed to calm Clark down before we returned. We were very relieved to see this, since Patrick and I were a 15 minute walk away when we received the call! Unfortunately Clark’s nap ended up being only 15 minutes long due to the unkind wake up, and he wasn’t able to fall back to sleep. The night ended with no additional signs of upset stomach, but he was a little grumpy from being sleepy. (Heinrich?)

It’s difficult to tell the reason why Clark started to vomit. It could have been a cough that triggered his rather sensitive gag reflex, followed by the fact that neither of his parents were there to calm him. Or this could have been nausea and vomiting due to his chemo. Clark has a daily drip of anti-nausea medicine. This is needed to keep his stomach calm. But it is very possible that the medicine is not strong enough some days.

So, hopefully an isolated incident, and not the “wrath of Day +4”.  We spent the end of the day playing by the window and enjoying cookies.  If Clark is going to start rejecting food (due to chemo), Patrick and I decided we should start including foods he never says “no” to.  That way we can see if the problem is the type of food, or his stomach.  Cookies and ice cream accompany every dinner because of this.  Plus… YOLO, hombres!

One of the things we ask the doctors most often is… how do we know if Clark is doing well?  This isn’t like a cut, where you can see it scabbing and know it is healing.  Nor like a muscle, when you can measure its range of motion and strength.  So, what do we have to look at to measure progress in this phase?

As we talked about earlier, when destroying his existing bone marrow, we were most interested in Lymphocytes.  And sure enough, these were “crushed” to an immeasurable amount just as we entered transplant.  But what are we watching for now?

It turns out there are both positive and negative indicators that we will be focused on over the next 2-4 weeks.  The positive ones relate to growth of the new bone marrow, and the negative ones relate to attacks on his body externally and internally.

The positive measures will take some time.  This will come in the form of ANC, neutrophils and white blood counts rising.  We don’t expect to see any change in these numbers until about day +14. This is about how long it takes for the bone marrow cells to take root and start producing.

Until then, we are really just on the lookout for any negative reactions.  There are several measures that we are watching diligently.

One is fevers.  During the time Clark is Aplastic, he is really running without any immune system. So basically he is an open smorgasbord waiting to be devoured by viruses, bacteria, and fungus.  While we have several prophylactic drugs running through his body to prevent anything from attacking him, these are general drugs, as we cannot give him a drug to fight everything.  So we watch for fevers, and if he gets one, then we have to take a blood culture immediately and make sure it is a bacteria that we are addressing through the existing medication.  If not, we have to start giving additional medications.

The other more concerning negative indicator is (of all things) a rash.  A simple rash that grows worse over a couple days will be the number one thing we have to watch for.  Why?  This symptom is a strong indicator of graft-vs-host disease (GvHD).  If this occurs, we will have limited options available to us.  Most likely we will immediately start immunosuppressive therapy, to try and suppress the immune system and help the bone marrow “reset”.  This would be days of additional drug therapies, and it would be very stressful.

So, in a nutshell, we are trying to keep Clark healthy until the new bone marrow takes root, and at the same time hoping the new bone marrow doesn’t reject its host.  This two week phase is the toughest part of the treatment process, as it is simply a waiting game – void of many indications of success, but riddled with possible failures.