Month: August 2014

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BMT: Chemo (Day -8)

Monday night was a little rough. Every time Clark’s Benedryl and Tylenol wore off, he ended up with hives on his face and arms as well as a fever. I guess I shouldn’t be surprised since Clark was getting Chemo for a total of 8.5 hours yesterday, plus a 4 hour blood transfusion last night. Clark has been such a trooper. Even with his interrupted sleep, Clark woke up at 7:30am today (Tuesday) ready to play! I on the other hand, could use a long nap or a very strong cup of coffee.

Clark continues to have a big appetite. This is one thing the nurses are looking out for since loss of appetite is very common in chemo patients. I need to remember to give him lots of variety, and not only feed him “comfort foods” because he might end up associating those foods with his hospital visit. Thankfully the hospital menu has a nice variety and also contains organic, all natural, local and healthy options. If Clark does end up loosing his appetite, he will be given TPN and lipids in IV form (or as Patrick likes to call them, ‘Gatorade’). These contains all of his daily nutrients, fats, calories and electrolytes.

Today was a relatively quiet day. Clark only had very mild hives and low grade fever, all of which was controlled by his pre-meds. He also had 2 long naps with some playtime in between. This gave Mama time to read, and work on the blog. :) Clark’s platelets dropped to 6000 (they were 34,000 yesterday), so he also had a platelet transfusion.

As for now, Clark’s playtime consists mainly of driving his fire truck, cars and trains, reading books and playing peek-a-boo. The hospital has a “Child Life” specialist. From what I understand, this team will bring some toys and a play mat for Clark to play with for a couple of hours. We are going to try to take advantage of this whenever possible. I have also spoke with the pediatric physical therapist, and she would like to spend some time helping Clark progress (or at least, not regress) while in the hospital.  Spending 6 weeks in a hospital crib can affect childhood development, so the goal of both of these specialists is to address this proactively.

Daddy has been coming to visit every night after work. This is a time that both Clark and I look forward to. Patrick comes in like a knight in shining armor, here to play with Clark and to give Mama a break. He also usually arrives with supplies, like clean laundry and dinner. :) Thank you Patrick! We love seeing you.

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BMT: Chemo (Day -9)

Today is the official start of Chemo therapy.  Most of the noticeable side effects are expected next week, as it takes time for the chemicals to do their job and affect the body.  All we hope for this week is no surprises or serious reactions immediately after being given first doses of the chemicals.

Clark woke up bright and early this morning. This gave him time for some breakfast and playtime with his trains before chemo. He started out with Fludarabine (flu-dare-A-been) at 9am. This is slowly dripped into his line over 30 minutes. Fludarabine generally doesn’t have any negative reactions while given, but can sometimes cause nausea and vomiting after being administered.

Next, Clark was given Benadryl and Tylenol before his 10am Campath test dose. The pre-medications are to help prevent a reaction to the Campath. Common side effects are hives and high fever, along with possible serious effects such as Anaphylaxis shock.

The Benedryl Clark was given just before his Campath had him asleep for the entire 2 hours. He woke up happy and well rested. I thought we were in the clear, but unfortunately the nausea and vomiting kicked in around 2pm. He also had a fever (101F) and has been sleepy ever since. These are very common reactions and they usually occur some time after the Campath has been administered. He is being watched closely, but so far there is no need for extreme measures. On a positive note, Clark did not have anaphylactic shock!

Every time a highly reactive medication is given, Clark is constantly monitored. The nurse checks in on him every 15 minutes twice, followed by checks every 30 minutes until the medication is complete. Clark is also hooked up to monitors for his respiration, pulse and blood oxygen level.

Tonight Clark will finish off his 6 hour dose of Campath, followed by a red blood cell transfusion. Then, tomorrow morning we will start all over again.

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BMT: Admission (Day -10)

This morning Clark, Patrick and I arrived at UCSF to start the BMT process. We arrived shortly before noon.  Today, the order of events are all about making sure Clark is prepared for the start of chemo tomorrow.

Before even entering our treatment room, Clark needed to have a chest X-ray to make sure his broviac was placed correctly. Next we were taught how to scrub our hands up to the elbow with a sponge brush. We need to do this once a day before entering the room, or any time we leave the hospital and return. After scrubbing we were allowed to enter the “anteroom“.

The anteroom is a small room the connects the hospital hallway to Clark’s treatment room.  It serves as a staging area where we can wash up and store anything considered “unsanitary”. Everything that enters Clark’s room needs to be disinfected.  This is also the space where Patrick and I eat our meals.

The first thing I noticed when first entering Clark’s treatment room, was the wall of windows looking over the city.  The room has a very nice view.  It is also a decent size. Enough room for a single bed, Clark’s crib, a computer desk, wardrobe closet and medical equipment. We also have our own private bathroom! But we can’t use the shower, unfortunately.  Since the risk of infection is so great, no one is allowed to shower in the room.  Since Clark is still in diapers thankfully, I am allowed to use the toilet and the sink in the room.

One of the big things we learned today was that every procedure, large or small, has very specific rules.  Take his bath, for instance… Clark will receive a bath every single day, but not a normal bath, a chloral-hexadine bath (or as Patrick likes to call it, a chemical bath). This uses 4 sterile wipes that kills off any germs that may be living on Clark’s skin. We were also given special instructions on how to “brush” Clark’s teeth, change his diaper and how often to change his bed sheets.

The rest of the day was followed by A LOT of blood draws (CBC, cultures and factor levels) and medications. The blood draws and medications are all given through his broviac. Even though Clark only has 2 lines, they are able to hook up 2-3 IV lines to each broviac line (6 lines total). This way Clark can receive multiple medications or fluids on each line. He doesn’t start the chemo drugs until tomorrow, but today he started his anti-viral, antibacterial and anti-nausea medications (just to describe a few).  All of these drugs are given to cushion the blow from the chemo drugs that are coming (fludarabine, campath, and cytoxan).

Overall, Clark actually had a fun day! I was a little worried about having him be in a hospital crib during our stay, but so far it has turned out great! The crib rails can go up quite high, or drop as low as we’d like. Plus, there is a clear plastic cover that we have the option to drop down for maximum protection. This way I am able to leave the room for a minute (even just to use the washroom) without worrying about Clark falling out of bed.  Clark likes his new environment as well.  He has been standing, jumping, dancing and playing in the crib all day.  He is also loving the attention he is getting from his nurses. :)

Tomorrow is a big day for us, so time to head to bed.

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Thank you! Thank you! A million times – thank you!

We are following a blog about another young Canadian girl (Nadia) who is afflicted with DKC that is also having to go through blood, platelet, and bone marrow transplants. While reading about Nadia (nadiasquest.ca), I noticed that her parents thanked their donors every time they received blood, platelets, etc…  This enthusiasm to continuously thank the donation community really struck a cord with me.  Why hadn’t Beth and I been so generous in our thanks for these donations?  We certainly are very grateful!

In thinking this over, it occurred to me that in the current healthcare system, there is massive disconnect between those who give and those who receive.  This is done to provide security and privacy for both the givers and the receivers.  On a day-to-day basis, it is very hard to recognize that the blood or platelets being given to Clark are from a real human being (that took time out of their day to draw blood or platelets) and from an organization dedicated to collecting, testing and treating the product once they get it.  It’s a massive engine of activity to get product for Clark that appears to simply come from a closet in the back of the hospital.

So, having been reminded of this, I wanted to issue some long overdue thank yous.

First and foremost, to the blood and platelet donors.  Thank you very much for taking time out of your busy day to make it to a clinic and donate.  Clark would not have survived this long without your help.  Your effort, has literally, saved the life of our young boy.  Thank you!!!

Secondly, to our bone marrow donor (currently only known to us as a “European” donor).  Thank you so much for being willing to go through the process and procedures required to give bone marrow.  We are very aware how disruptive, time consuming, and (in some cases) how painful it can be to give bone marrow.  Thank you so very much for your willingness to go through this procedure.  You are saving the length and quality of life for our young boy.  He would not be able to live and thrive without you.  Thank you!!

Third, to our doctors and nursing staff who literally number somewhere between 40-50 people.  To the doctors who have been patient with our questions and diligent on finding the correct diagnosis, thank you!!  To the nurses who have made our hospital stays comfortable and have been patient with all the questions and needs of both of our sons, thank you so very much!!

Fourth, to my mother.  Thank you for being willing to put your life on hold while Beth and I go through this painful process.  Without you, Beth and I wouldn’t be able to survive as a couple.  You have made it possible to both spend time with one another, and spend time with Clark and Connor.  We would not have been able to get this far (much less through the coming BMT) without you.  Thank you so much!!

Fifth, to Connor.  I know times are tough right now, and you don’t get to see mom and dad as much as you used to.  We are so sorry that we don’t get to see you while we are in the hospital with Clark, but your positive attitude and willingness to work with the current situation is very impressive to us.  Thank you for never complaining about mom and dad having to leave, and thank you for being so overjoyed to see us when we are able to make it home.  We love you so much, and will do our very best to make it up to you the best we can.  Thank you!!

Finally, to our extended friends and family who have given us financial and emotional support.  Beth and I could never have imagined life taking a turn like this, and we continue to be amazed at the outpouring of support and willingness to jump in and help.  And we can use all of it.  Thank you so much for all your help and your kind and positive thoughts!!

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Thank you!!

While we expect to have a steady stream of very specific appreciations as this process goes forward, it will be impossible to thank everyone, so know these efforts are far from exhaustive.

And just in case – thank you to anyone we may have missed!! Clark as well as Beth and I, are eternally grateful to everything you have done.

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One is great, so two must be better!

In preparation for Clark’s BMT this Monday, we needed to have his single line broviac removed and replaced with a double line version.  The double lumen broviac is ideal for placing medicine (or in this case chemo) at the same time as pulling blood samples.  Single line would require switching lines and flushing between pushing and pulling liquids.

As with every surgery Clark has had (this was his 4th so far), we are always nervous about putting him under the knife.  Luckily all went well, and he is recovering nicely. Clark didn’t appear to be in any pain, until lunch came.  He must have been starving as he completely devoured all of his food, and then ate some of Beth’s.

We are scheduled to remain at Kaiser hospital until Sunday, and then transfer directly to UCSF for the start of the BMT.

 

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Second Birthday!

In the BMT industry, some refer to the day a patient receives their transplant as their “new birthday”.  This is because the patient will get brand new bone marrow that will produce blood that has different DNA than the original bone marrow.  Organs will remain the same as before and carry their original DNA, it is only the blood DNA that will be different.  So when the BMT is complete, Clark will carry 2 types of DNA inside of him.  In medical terms, Clark will become what is known as a Chimera.

The Chimera was, according to Greek mythology, a monstrous fire-breathing hybrid creature composed of the parts of three animals – a lion, a snake and a goat. Usually depicted as a lion, with the head of a goat arising from its back, and a tail that ended in a snake's head.
The Chimera was, according to Greek mythology, a monstrous fire-breathing hybrid creature composed of the parts of three animals – a lion, a snake and a goat. Usually depicted as a lion, with the head of a goat arising from its back, and a tail that ended in a snake’s head.

What is even more interesting is that since the new bone marrow will effectively produce blood that is genetically the same as the donor, Clark will also receive some of the characteristics of the donor’s blood as well.  That is, Clark will share the same blood type, the same seasonal allergies as the donor, and possibly the same food allergies!

For those who are curious, the bone marrow transplant will not affect Clark’s DNA contained in his sperm.  So if Clark ever gets to the point where he decides to have children, they will definitely look like Clark, and not the bone marrow donor.  (You’re welcome.  We were just as curious once we heard this…)

As well, since Clark’s bone marrow will be starting over, he will also need to start his immunizations over again as well.  All the benefits we had with his original immunizations will be wiped out.  Not surprisingly, it will be just like starting over from when he was born!

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Will all racers please take their place at the starting line.

The big day has finally arrived.  On August 11th, we will begin phase 1 of the BMT treatment. There are 3 phases overall.

Phase 1 is the conditioning phase. This is just short of a 2 week process where Clark will be given chemotherapy to destroy his existing bone marrow. Phase 1 is tracked as a negative countdown (much like a shuttle launch), where day one of Phase 1 is identified as -9. Countdown (or count-up in this case) goes until day zero, where we enter phase 2.

Phase 2 is known as the aplastic phase. In this phase, Clark’s bone marrow has been “emptied” and is ready for the donor bone marrow. This phase lasts 2 weeks as doctors anxiously wait and watch for signs that the new marrow has taken hold, and is growing.  Day zero is effectively a “new start” for Clark’s bone marrow.  It will be like his marrow has been re-born, much like when Clark was in his 3rd trimester of birth.  Some refer to day zero as Clark’s new “birthday” because of this.

Phase 3 is known as the isolation phase. This is where we keep Clark isolated from viruses, bacteria, and fungus, as his numbers steadily climb and he recovers while his bone marrow grows. This phase can last many months and will be spent partially in the hospital (4 weeks), and partially at home (4-6 months).

Beth will join Clark for most of his time in the hospital.  She will be updating us daily on Clark’s progress from his isolation room.  If you have a positive thought for Clark, now is the time to put it out there!!

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A little bump in the road, continued…

After pulling an all-nighter at ER the night before, Patrick and I hit the sack early to get some well deserved sleep.

But it wasn’t meant to be.

At 3am in the morning, we were jarred awake by the sound of the phone ringing.  When I answered the phone, there was a very urgent tone coming from the person talking.  It was the lab technician who was analyzing Clark’s blood culture.  He said Clark’s blood culture had grown and was showing signs of a category of bacterial infection called “gram negative rods”.  He said we needed to go to Oakland ER immediately for antibiotics, as this strain of bacteria can be very dangerous if not treated properly.  And just to understand how dangerous he was talking about, E-coli is one of the bacteria found in this category.

We quickly packed our overnight bags and headed to the Oakland ER. The trip turned out to be a very long one.  Over the next 8 days, we “lived” in the hospital while Clark was given antibiotics and a series of blood culture tests.

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Clark loved having his trains at the hospital. We were able to fit an entire loop on his dining table, and then run a battery powered train continuously. He would watch it go around for hours!

By the 4th day, the doctors were finally able to identify the strain of bacteria. Unfortunately, the antibiotics Clark had been on up until then were the wrong ones!  Clark had a rare bacteria that the current antibiotics were not effective at killing. The bacteria, Pseudomonas, can be normally found in dirt, plant spores or just blowing around. Most people are not affected by it, but as it so happens, this bacteria loves broviac’s, and people with compromised immune systems.

Since Clark wasn’t showing many signs of an infection (no fever and he was happy and energetic), the doctors assumed the bacteria was harboring inside of Clark’s broviac. So they decided to have his central line removed. This on its own is not a big deal since we were planning on switching it out for a double line this week anyways. The problem was that we would not be able to put the double line Broviac in until the bacteria is completely out of Clark’s system. And without some type of central line, giving Clark infusions or medicine would be difficult (or near impossible).

So, during the surgery to remove Clark’s original broviac, Clark had a PICC line inserted in his arm. This is basically a mini broviac, or catheter that was inserted in his arm to receive his medicine, or blood products if needed.

Late on the 8th night (Monday August 4th) we were finally sent home with oral antibiotics and instructions on how to care for Clark’s PICC line.  We were very glad to be heading home.  It gave us 2 days to plan for Clark’s upcoming BMT, and more importantly, some much needed TLC with Connor.