It finally happened. After months of planning, delays, and rescheduling things, the transplant officially got two thumbs up. The last blog post shared that Kolt had officially checked into the hospital for the bone marrow transplant. We were slowly counting down the days for conditioning, which is what everyone calls the chemotherapy regimen with the associated medications that go along with it. Kambria (and the rest of the family continued on lock down), and our goal was to make sure that Kambria did not get sick. As always, if you want to go back and read some of the previous posts before diving into the newest updates, you can find them here: Blog Post #1, Post 2, Post 3, Post 4, Post 5, Post 6, Post 7, Post 8, Post 9, Blog 10, Blog 11, Blog 12, Blog 13.
Kambria was originally scheduled to return to the hospital for the bone marrow harvest on Friday, and the transplant was going to happen with Kolt on Saturday. The Tuesday before the transplant, we were informed that they had moved up both procedures by one day, and that the official bone marrow collection process would happen on Thursday instead. Kambria and I went to Texas Children’s in the morning in order to complete all of the paperwork, and sign her in. The surgery before hers was running a little behind, so we were able to knock out at least 75% of the Lego Batman movie while we were in the back room waiting for the transplant team to come and get her. She was a little nervous, but took it really well. They let her pick the special scent/flavor that they lace the mask with so that the kids are more at ease. She picked root beer after much deliberation. I reminded her that root beer was an adult beverage in our home, and to not get used to it. In her perfect “13 Going on 30” way, she rolled her eyes and said, “Oh dad…” In addition to the root beer flavored knock out gas, her favorite pre-op process was the surgical outfit that she received. The super soft shorts and shirt combo have been worn every day since she got home.
Kambria Pre-Op
Everything went well during the bone marrow collection process. Two little holes were created, and the bone marrow was collected. She woke up in good spirits, and was given her own Icee. After paying the inevitable “Dad Tax,” and waiting for clearance from the anesthesiologist, we were then able to load her up in a wheel chair and wheel her down to where Stephanie and Kolt were. We piled a bunch of pillows onto Kolt’s medical crib, and let Kambria get comfortable there.
The team that was collecting bone marrow asked for permission to collect more than they needed for research purposes. It appears that healthy bone marrow from children is harder to come by, so they were excited when we all agreed to it. We do not know what all will be done with it, but hopefully they are able to come up with something good.
In general, Kambria’s procedure and recovery went really well, with one minor crazy unfathomable odd miserable asinine interesting exception. The doctor that performed the harvest told me that since Kambria would be staying in the hospital over night, that if we needed anything, we could ask the nurse and they would get it for us. He specifically mentioned Tylenol, ice, or anything else that may make her more comfortable. With that in mind, as evening set in, and the pain medication wore off, Kambria began hurting more. Stephanie then requested Tylenol from the nurse on the night shift, but was told that she could not give her anything. This created a little bit of conflict as we were told to get something from the hospital, but it was being refused. Eventually the night shift doctor became involved, and the doctor told Stephanie to go downstairs and check Kambria into the ER if she thought she was bad enough, since there was nothing they were able to do. (Obviously Stephanie could not leave the floor with Kolt, let alone with Kambria, and tensions were high.) Kambria never received any pain medications until I was able to get back up to the hospital the next day. It was frustrating to say the least, and we felt bad for Kambria since she was in pain, but it was also disappointing to be in a hospital and not be able to get over the counter medications to help. In the hospital’s defense, by the time Kambria was discharged, and moved into Kolt’s room, she was technically no longer a patient, and no longer able to be treated by the hospital without regaining “patient” status (by going and checking into the ER), but with Stephanie being in isolation, being told that they would be able to help from another doctor, and then only seeing an unapologetic cold shoulder from the evening nurse and doctor while your daughter is writhing in pain from having a drill dug into her hips, it put a bad taste in our mouth.
In lighter news, Kambria survived. I kept telling her that she got run over by a car the weekend before starting Kindergarten so that she would be prepared for hospital visits like this.. she continued to respond with the infamous rolling of the eyes.
Kolt’s transplant on the other hand was much less eventful. Friday morning, June 22, 2018, the family arrived in order to celebrate the process with him. Transplant Day is a big deal, as it is obviously what we have been working toward. Over the last two weeks, Kolt has been on a crazy amount of medications on order to prepare his body to receive the new bone marrow. Most days he was given around 10 different medications, two to four times a day. These medications were responsible for killing off his own bone marrow, helping prevent liver damage, seizure activity, vomiting, etc. When the actual transplant started, he was given additional blood pressure medications to keep everything in the appropriate ranges.
Kambria holding the bone marrow bag with Kolt
The bone marrow transplant does not involve a surgical procedure. In reality, it resembles a blood transfusion. The bone marrow that was collected from Kambria, went through the processing system of spinning it down, and adding saline so that it arrived at the appropriate consistency. It was then placed in a drip bag, and gravity fed to Kolt through the central line. Due to the added blood volume directly to his heart, his blood pressure started going up to compensate for the added volume, and try to push it out, so in addition to the two medications, they also slowed the drip to as slow as they could make it without having the fluid clot. The originally scheduled 2.5 hour process instead took closer to 4.
Bone marrow transplant
Receiving bone marrow through central line
So far (2 days post transplant) Kolt is holding up pretty well. We will not know if the transplant worked until around the 20-30 day mark like we have mentioned in the previous posts. Right now we are anticipating that the bone marrow that was added to his system is slowly settling around, and trying to take hold. Once it begins to start growing in his system, he will probably start feeling miserable. Engraftment Syndrome is the miserable feeling, accompanied by mouth sores, burning in the digestive system, and ulcers at or near the rectum that indicate that things are going as planned. It sounds terrible, but to add salt to the wound, the chemo medications also start showing outward signs of how effective they were at killing everything off on the inside. This is the phase of hair loss, nausea, etc.
In preparation for this, he will continue on a cocktail of medications, but they have also included IV nutrition since appetite, and just the ability to eat will probably drop. Since he is still able to breastfeed, albeit in small and limited amounts, he is only on a half dose of the IV nutrition needed for his body weight. Today due to some of the things he was doing, the least of which included half way pulling out his central line, he has already received a small dose of morphine to help with the pain. Kolt continues to get really excited when we talk on the phone, and tries really hard to smile, and laugh when people go into the room and talk to him. These next two to three weeks will probably be the hardest for him. We will officially know how everything worked within the next 20-30 days.
In other news, Dr. Forbes, Kolt’s lead immunologist at Texas Children’s went to a medical conference last month, where she sat through a presentation by Dr. Flake, the immunologist at Childrens Hospital of Philadelphia. The presentation was a case report about Kolt, and the in utero bone marrow transplant that was attempted last February. They were able to talk a little bit at the conference, and Dr. Flake sent an email to us to see how things were going. The world of elite level immunologists is a small one, so it is cool that they were able to meet up and get to know each other.
There are still plenty of unknowns at this time, and we know we are not out of the woods yet. Kambria is no longer in isolation, so we were able to go to church this week, and she was excited to see everyone that she was unable to see for the last 4-5 weeks. They all made her get well soon cards, and she felt like a rock star as everyone came up and congratulated her for her part in the process. Tomorrow she starts volleyball camp, and other than the occasional flinch if she moves wrong, you would never know anything happened just a few days ago. These small “life as normal” activities are exciting, and we look forward to when Kolt and Stephanie return home from the hospital (hopefully in the next 3-4 weeks) so that we can continue the remainder of the 100 day isolation period, and then slowly reintroduce Kolt to the grimy, germ-infested toxic world me live in. 🙂
More pictures…
This is not her buttocks. It is her lower back. The line is to identify her spine. Surgical sites under the bandages. This was about 24 hours after surgery.
Kambria holding Kolt on the same day she donated her bone marrow
Kambria in the recovery room with an Icee
“Traditional” adhesive removers did not work, so we had to go old school. WD40 is an excellent adhesive remover.
Surgical sites after removing the bandages. Two small holes are where they got the bone marrow. She is a little red from the adhesive glue being rubbed off.