Mon, Nov 19th, my mom and dad arrived to the hospital right when the nurse was taking us up to Molly's room, so they rode the elevator up with us. I had Molly in my arms and my dad carried the tissue box the nurses gave me and the apple juice they gave Molly. In the elevator one of the nurses said while checking her papers "Let's see, you'll be in room..." and I was thinking it would be kind of cool if it was room 13. The nurse finished "... room 413." I said "Well that's neat... that's my favorite number! If there was anything I am superstitious about, it's my lucky number." So we got up to the 4th floor and walked through what seemed like a million halls and took a million more turns to get to room 4413. In reality it was only 3 halls and 2 turns, but I didn't get the hang of the layout until I actually left Molly's hospital room for the first time 3 days later.
We got all situated in the room and they immediately hooked Molly up to an IV for a platelet transfusion, which took about 30 minutes total for that. Then they put her on 5 bags of blood at 2 hrs each, so she was done with transfusions at around 9am the next day. She perked up and got a healthy pinkness in her cheeks only about 1/2 an hour after starting on the blood, so that was reassuring. This whole time I was crying still, and because of all that extra fluid running through my face I was also coughing up a storm for the whole week, probably due to the fact that I had just gotten a cold. The nurses put Molly's room on "droplet precaution" because of my cough, so every doctor and other hospital worker that came in the whole week wore a face mask and paper robe.
Big Sis was at grandma's house that first night and Daddy and I stayed with Molly in her room. Because of all the fluids she was taking in and because she was hooked up to so many lines, she needed assistance going to the toilet about every hour or so. Since we were rather tired already, I fell asleep first around midnight and Daddy stayed up with Molly for the first 4 hours or so. Then I stayed up with Molly the rest of the night while Daddy slept.
Side note: I just have to say 3-day potty training method is great, and I am so glad she's potty trained and we aren't throwing time, energy, and resources at diapers anymore, but it was a pain in the butt while at the hospital because she absolutely would not accept going in any diapers while there. We had no choice but to carry her to the toilet, IV pole on wheels in tow, every hour or less. Every (and I mean every) doctor or nurse that saw she had underwears on said that they were so impressed she's potty trained already.
Tues, Nov 20th, Molly got a slight fever and her blood pressure went up a little right after getting the blood transfusion so they put her on a 3x/day antibiotic (ceftazidime or FORTAZ) and a 1x/day blood pressure med (amlodipine or NORVASC). The rest of that morning we were just waiting for someone to officially diagnose Molly, and we got lots of visits from various hospital workers such as the child life specialist (person who makes sure the kids are comfortable and brings them toys to play with), and the social worker (our assigned social worker is amazing - she reminds me 100% of my aunt Peggy and she kept saying she's totally impressed with how we are helping Molly and Big sis adjust to the new normal).
Around 3pm on Tuesday one of the surgeons came in and started to explain to us that because Molly has leukemia, she'll be getting an IV port implanted into her chest the following morning which will help greatly with the IV transfusions and other chemo administrations, and they'll also take bone marrow from her hip and do a spinal tap to check for leukemia cells there and to administer chemo into her spine as either a prevention if there was no leukemia there or as a treatment if there was leukemia there. We had to stop the doctor there and ask if Molly really had leukemia, because no one had come in to tell us for sure that she had it or not. The doctor apologized because she didn't realize we had not been told, and then she said she'd come back later after the attending doctor had a chance to talk to us. After she left, me and Daddy had some special words for the hospital's method of organizing their staff's duties.
Quick lesson: The Bard PowerPort
- The IV powerport is implanted into the chest. It is a small device about the size of a quarter, and it has 3 bumps on the top of it to help nurses know where to insert the port needle which is only used when they need access to the bloodstream. The port under the skin is connected to a catheter which is tunneled under the skin to a nearby location where the catheter is inserted into one of the large central veins. The surgeons make two incisions, one for the port itself, and one where they put the catheter into the vein. The port stays in the chest under the skin for the duration of the treatment (2.5 years or so for us). While the port is accessed (has a port needle in it), it needs to be flushed with saline and heparin (an anti-coagulant so the line doesn't get clogged) once a day or after each treatment is administered, which ever is sooner. If the port is not accessed, it only needs to be flushed once a month or so. If the port is accessed for a long period of time, the port needle needs to be changed once a week.
Well, the attending oncologist came in a bit later and apologized as well for the surgeon coming in too early, and gave us the official diagnosis of Acute Lymphoblastic Leukemia. He gave us some information on the Children's Oncology Group (COG), which is a worldwide consortium of doctors studying children's cancers, and explained that no matter where we lived, Molly would receive the same cancer treatment as anywhere else. He explained that they are doing several studies or clinical trials, one of which Molly qualifies to be on if we consented, that will help the COG find more comfortable ways of treating cancer. He said the treatment is practically exactly the same either way, but the chemo doses on the study may have a slightly different schedule than the normal route, and there will be follow-up visits for up to ten years after the treatment is finished. We decided that since there's no extra cost to us, we were totally fine with Molly being on the clinical trial. Especially if it advanced the treatment methods of this disease that not so long ago (1960's) was a fatal disease that had no chances of surviving.
Quick lesson: (Source http://asheducationbook.hematologylibrary.org/content/2008/1/365.full)
Acute Lymphoblastic Leukemia: An Historical Perspective
Astute observations, dedicated researchers,
cooperative groups, and clinical trials as well as guinea pig serum,
hypoglycemic
cows, and periwinkle plant extracts—all contributed to
the evolution of the term “cure” used with acute lymphoblastic leukemia
(ALL), a disease that was invariably fatal until the
1960s. Over 50 years ago methotrexate, asparaginase (discovered when
guinea pig serum inhibited experimental lymphomas by
degrading the essential amino acid asparagine to aspartic acid), 6
mercaptopurine
(the first designer drug) and steroids were being used
to treat children with ALL. Remissions were short lived and children
died, generally within a year. Since many patients
were needed to study these agents, ALL was the stimulus for the
formation
of modern cancer cooperative study groups. In the mid
1950s, three children’s cooperative groups—Acute Leukemia Group A
(eventually
Children’s Cancer Group [CCG]), Acute Leukemia Group B
(which became Cancer and Leukemia Group B [CALGB]), and the Southwest
Cancer Chemotherapy Study Group (which evolved into
the Southwest Oncology Group [SWOG])—formed in rapid succession.
Internists
also soon joined and began to enter patients into
clinical trials. The 1960s were characterized by the discovery of
vincristine,
an extract from the periwinkle plant, which was being
studied as a possible antiglycemic agent for hypoglycemic cows. It was
noted to have a myelosuppressive effect; when given to
children with ALL, 60% of them went into remission, a rate that
increased
to 90% when combined with prednisone. The incidence of
remission was not increased significantly when vincristine, prednisone,
and l-asparaginase were combined, but it was noted that when all three agents were used remissions lasted longer.
A major milestone occurred in the late 1960s
when physicians began to treat occult central nervous system leukemia.
Realizing
that central nervous system was present but not
measurable, clinicians at St. Jude Children’s Research Hospital began to
use
cranial radiation and later intrathecal therapy
prophylactically to prevent the spread of hidden disease. The 1970s
witnessed
the dramatic results of this therapy, as the first
“cures” were recognized and survival rates improved dramatically to over
50%. The 1980s witnessed the development of risk-based
therapy and the beginnings of bone marrow transplantation as therapy
for children with refractory or relapsed leukemia. The
1990s saw the application of the knowledge and tools of molecular
biology,
and a uniform system of risk classification was
developed. European investigators from Berlin, Frankfurt, and Munich
(BFM)
intensified postinduction therapy (consolidation) by
using higher doses and cycling multiple agents (the BFM regimen). This
type of approach has resulted in a significant
improvement in survival, especially for patients at high risk of
failure.
The first decade of the twenty-first century
saw the merger of the CCG and Pediatric Oncology Group into the
Children’s Oncology
Group, the incorporation of the molecularly targeted
tyrosine kinase inhibitor, imatinib mesylate, in treatment for patients
with Philadelphia chromosome–positive ALL, use of a
long-acting form of PEG l-asparaginase in newly
diagnosed patients, and approval of nelarabine for patients with
recurring T-cell ALL and clofarabine
for patients with recurring ALL. Retrospective studies
have shown that young adults with ALL treated with pediatric protocols
have a better outcome. Optimal treatment for older
patients still remains a challenge. Selecting therapy based on patient-
and disease-specific prognostic factors has led to a
significant improvement in outcomes for childhood ALL, and the more
recent
adoption of this approach for adults has had a similar
favorable impact.
We signed the necessary papers for consent to be on the study, consent to follow through with the port placement and bone marrow draw, and consent to use anesthesia. We received instructions that Molly had to have nothing to eat after midnight that night so her stomach would be empty for the surgery the next day. They also told us that they couldn't schedule the operating room until the next morning because they won't know for sure when it will be available for the length of time they need it for Molly's procedures, and even then it might get bumped if another more urgent emergency operation comes up.
That afternoon, somewhere in there, Daddy's parents brought Big Sis to the hospital to visit Molly, and my parents and siblings and great-grandma came to visit as well. I think the ICS (Immuno Compromised Services) nurses thought we were rule-breakers for having more than the allowed 4 people in the room at one time. But only one nurse reminded us of the rule, and that was on the last day we were there. That night Big Sis stayed at grandma's house again, and Daddy and I took shifts with staying up with Molly. Daddy went to Arby's to get us lunch that day, and his dad picked us up some Taco Bell for dinner, while Molly ate her favorite pancakes or mac & cheese from the cafeteria all day long.
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| iPod and Netflix were Molly's favorite things during our stay at PCMC. |
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| Molly and her favorite Big Sis |
To be continued...
P.S.
Please comment if you have anything to say or if you have any additional questions about the post above you would like answered.
